Howdy, my friends!
Hope you all have been happy and well this past week. My husband and I have been trying very hard to get a sense of "normalcy" back into our lives. We haven't had much luck. We thought we had the nausea/vomiting problem licked, but it returned with a vengeance this morning. He was supposed to get a CT scan of his abdomen this morning, but he kept vomiting that I saw NO WAY he could keep the oral contrast down. So we called and rescheduled it for tomorrow at 9am. Check in at 8am. I hope and pray that tomorrow will be a better day. There's always hope!
As soon as he has the CT scan, the surgeon will call us and let us know what it said and what the "game plan" is from here. Will he keep the abdominal drain for two weeks or will he get rid of it in one week....that is the million dollar question. I don't want to remove it too soon, especially since it still is getting a little drainage out of it. Only about 20cc/day, but if that drain were gone, it would build up inside him and block the intestines again. We definitely don't want that!!!
Frankie went to the oncologist on Monday and he said that as soon as the CT scan is done, he will look it up and see where we should proceed with the Gleevec. He already has told us that he will start Frankie out at 400mg/day for awhile then increase it to his usual dosage of 400mg twice a day. We just don't want to take a chance that the tumor will return if he is off the Gleevec. He also had labs drawn to see if he is anemic still. The doc said that if he was, he could get an outpatient transfusion.
That pretty much is all that's going on so far. I still am just absolutely worn down from this past month of going back and forth to the hospital in this drastic heat. Yesterday I slept from 5pm to 7am the following day! I couldn't believe it!! My husband was right beside me, doing the same thing! We both are just so worn down....come on, B vitamins, kick in soon and give us some energy!!!! LOL!!
As you can see, I did a little redecorating of the blog. I hope you like it and it's easier to read. I signed up for Google AdSense (which is where you can earn money by the ads on your blog) and was rejected. First thing, they were looking at a totally different blog that wasn't even mine. Then, they said that it was too hard to read and I had broken links. So untrue! I always check my links and they lead right where they should. If you should find a broken link that I missed, please let me know. But I was pretty bummed out. I work hard on this blog and when they rejected me, it was like an arrow to the heart. I can resubmit it, but I don't have the link to do that so I wrote Google for the link. Wish me luck!!
Thank you all for being such a good friend to me. I cherish each and every one of you!!!
God bless you!
Until next post,
Missy
Showing posts with label Gastrointestinal stromal tumor (GIST). Show all posts
Showing posts with label Gastrointestinal stromal tumor (GIST). Show all posts
Wednesday, August 11, 2010
Thursday, August 5, 2010
Like Clockwork
Howdy-ho, everyone!
My poor husband! Every morning, like clockwork, he wakes up nauseated and vomits. Sometimes a lot, other times not so much. But it happens only in the morning and like clockwork. I've joked with him and told him maybe he is pregnant. LOL! I can't figure it out, though. It's not like he has a seven course meal before bed! Tonight I'll try giving him one of his nausea pills and a Prilosec and see what that does for the morning time vomit episodes. Other than the above, he is doing really well. He eats and drinks regular food now, no more pureed stuff of the hospital. He's been playing on the computer and watching TV. Last night he even smashed soda cans for the recycle...but, I told him to NOT do the whole bag quite yet or he might get sick. It's really hot out in the garage and that's where the "smasher" is, so I told him to take it easy. And he actually listened to me! Wow! :0)
Yesterday the home health nurse, Tim, came to do the initial visit. He's a really nice guy, very funny. He was ordered to come over for wound care (the abdominal drain and dressings), but today we see the surgeon and he probably will remove the drain. I hated to see Tim go through the mountains of paperwork (whoever works in Medicare must get paid by the word...those documents Tim filled out were endless!!) if he was going to get rid of the drain today, but orders are orders. Tim said that if the drain was removed, great. He would stop by on Friday to make sure we were OK and then he would come some time next week. That sounded like a good plan. Tim said that everything looked great. The abdominal drain is only draining about 20cc's of bloody fluid a day and the dressing is still intact. No signs of infection. Tim couldn't believe Frankie had been through so much....and he really is a pretty healthy guy. Not like me, who has a whole compilation of medical problems! Before the surgery, he only had the GIST and seasonal allergies. That's it. You need a whole notebook to record my issues!!!
On Monday we go to the oncologist to discuss what we do next. Go back on the Gleevec? Full dose or half dose? Or NO dose? I feel really uncomfortable with him going off it completely. It's kind of like a security blanket that the tumor they couldn't get seven years ago will stay dead if he continues the Gleevec. But it WOULD be nice if he didn't have to take it, his legs wouldn't hurt so badly and he wouldn't need the narcotics, probably. He hasn't taken it since before the surgery and his legs are great. No more pain there - it's all in the abdomen from the surgery. And even that is lessening now. BUT, when we lived in Tucson and saw a GIST specialist from the U of A, he said that when he took a patient off Gleevec, the tumor not only returned, but returned with a vengeance! So we definitely don't need that! So it will be interesting on Monday to see what the oncologist has to say about this.
Well, I should start getting ready to take my hubby to the surgeon. I'm doing OK, not the greatest, but OK. My right knee is giving me problems now and the fibro is in its element inside my body, with all the drama of my life! It literally feeds off of stress and little sleep. Even though NOW is OK, I'm paying for the past month of no sleep and worry over my husband. Hopefully, I'm at the end of the flare-up. God, I really hope!!!
I'm glad the appointment is early, so we get get out and get back before the bad heat starts rolling in. We've had "excessive" heat warnings all week and daily temps of 105-110's. The sun is like a hot little orb in the sky, beaming down on all of us, sharing its warmth and misery!! LOL!
Hope you all have a great day and weekend. Another week has rolled around....where does the time go?
God bless you all!!
Until next post,
Missy
My poor husband! Every morning, like clockwork, he wakes up nauseated and vomits. Sometimes a lot, other times not so much. But it happens only in the morning and like clockwork. I've joked with him and told him maybe he is pregnant. LOL! I can't figure it out, though. It's not like he has a seven course meal before bed! Tonight I'll try giving him one of his nausea pills and a Prilosec and see what that does for the morning time vomit episodes. Other than the above, he is doing really well. He eats and drinks regular food now, no more pureed stuff of the hospital. He's been playing on the computer and watching TV. Last night he even smashed soda cans for the recycle...but, I told him to NOT do the whole bag quite yet or he might get sick. It's really hot out in the garage and that's where the "smasher" is, so I told him to take it easy. And he actually listened to me! Wow! :0)
Yesterday the home health nurse, Tim, came to do the initial visit. He's a really nice guy, very funny. He was ordered to come over for wound care (the abdominal drain and dressings), but today we see the surgeon and he probably will remove the drain. I hated to see Tim go through the mountains of paperwork (whoever works in Medicare must get paid by the word...those documents Tim filled out were endless!!) if he was going to get rid of the drain today, but orders are orders. Tim said that if the drain was removed, great. He would stop by on Friday to make sure we were OK and then he would come some time next week. That sounded like a good plan. Tim said that everything looked great. The abdominal drain is only draining about 20cc's of bloody fluid a day and the dressing is still intact. No signs of infection. Tim couldn't believe Frankie had been through so much....and he really is a pretty healthy guy. Not like me, who has a whole compilation of medical problems! Before the surgery, he only had the GIST and seasonal allergies. That's it. You need a whole notebook to record my issues!!!
On Monday we go to the oncologist to discuss what we do next. Go back on the Gleevec? Full dose or half dose? Or NO dose? I feel really uncomfortable with him going off it completely. It's kind of like a security blanket that the tumor they couldn't get seven years ago will stay dead if he continues the Gleevec. But it WOULD be nice if he didn't have to take it, his legs wouldn't hurt so badly and he wouldn't need the narcotics, probably. He hasn't taken it since before the surgery and his legs are great. No more pain there - it's all in the abdomen from the surgery. And even that is lessening now. BUT, when we lived in Tucson and saw a GIST specialist from the U of A, he said that when he took a patient off Gleevec, the tumor not only returned, but returned with a vengeance! So we definitely don't need that! So it will be interesting on Monday to see what the oncologist has to say about this.
Well, I should start getting ready to take my hubby to the surgeon. I'm doing OK, not the greatest, but OK. My right knee is giving me problems now and the fibro is in its element inside my body, with all the drama of my life! It literally feeds off of stress and little sleep. Even though NOW is OK, I'm paying for the past month of no sleep and worry over my husband. Hopefully, I'm at the end of the flare-up. God, I really hope!!!
I'm glad the appointment is early, so we get get out and get back before the bad heat starts rolling in. We've had "excessive" heat warnings all week and daily temps of 105-110's. The sun is like a hot little orb in the sky, beaming down on all of us, sharing its warmth and misery!! LOL!
Hope you all have a great day and weekend. Another week has rolled around....where does the time go?
God bless you all!!
Until next post,
Missy
Sunday, July 4, 2010
He FINALLY Farted!
Whew! I never thought I'd be more happy to have my husband fart!!! Yesterday he told me he felt some "pressure in his rectum" and it came out in the version of an "air fart." But hey, in my book, that definitely counts as passing gas! And then throughout the day yesterday he passed several times. They started him on IV nutrition because it's going on a week and three days since he last ate. And he says he is HUNGRY! So that's a good sign. So finally the colon awakens after a LONG slumber! Thank God-which I do several times each day for looking after my husband and for saving his life many times over. This GIST tumor is nothing to ignore, I tell you that. When he was diagnosed in 2003, the tumor was basketball sized, just laying on top of several organs and inside the abdominal cavity. They could only remove portions of it and had to leave a lot of it in because it just was too dangerous to remove it. So he started the Gleevec and that has been his miracle drug. He's been taking it since Sept. of 2003 and has been in remission.....and STILL is in remission. :0) Yay!!! To think this wasn't a tumor at all but just a tangle of arteries and veins in his intestine is phenomenal. I've never heard of AVM's (arterial-venous malformations) growing in the intestine, but as my husband has proved, they can!
The plan today is to keep up the walking and to sit up more in the chair. He will have the nasogastric tube clamped and if he has nausea, they will have to un-clamp it and restart the suction. If he ISN'T nauseated, they will completely remove the tube and start him slowly on liquids. I hope it goes that way and he can start the liquids. That is just one more step home! He still is producing more than average stomach fluid through the NG tube, but hopefully now that the colon is waking up, it should lessen. Another yay! He says he can't sleep very well as the bed is uncomfortable and he has to lay on his back because of the NG tube. He can sleep for only an hour at a time and then wakes up with a lot of pain. I feel for the poor guy. I wish I could do more for him!!! But his colon is slower than the second coming of Christ and was in hibernation for awhile. I HOPE this is the last GI surgery he needs. I don't think the bowel will tolerate a fifth round!!
My mother-in-law and I will be leaving shortly for another action-packed day at the hospital. We are going to stop on the way there and see if we can find him one of those pocket games that he can play. I know he misses the computer, so hopefully a little game will keep his mind occupied until he comes home.
As for me, I holding in there. I woke up stiff as a board this morning, even more than usual. My thighs feel like someone is jabbing them with knives. But no wonder with all that's been going on! The fibro is taking full advantage to make me miserable! But I will NOT let it stop me from visiting Frankie. Thank you everyone for asking how I'm doing, too, and for all your well-wishes and prayers. Every last one is precious to me. I feel honored to call each and every one of you my friend. Joining Facebook was the BEST thing I've ever done as I've found some really great friends AND I could start my very own support group, which is something I've wanted to do for a long time. So if you haven't already checked it out, please do. Just click on the butterfly image (thank you, Eileen McCarthy-Keddy for the use of her artwork!) above, underneath Jesus and it will take you right to the "FibromyWHAT?" support group. We have grown so much in such a short time and I've got a fantastic team of lead officers that have helped me out so many ways, I cannot thank them enough. And the members, too. Let's make "FibromyWHAT?" the BEST support group on Facebook!!
Happy 4th of July to every one of my American friends. BE SAFE and have a great time watchin' fireworks!! Here in AZ, so many places have been banned from doing fireworks because of the high fire danger risk, that I don't know if I'll see any fireworks. So I'll just "light" the ones I have on my farm in "Farmville" tonight.
God bless ya all,
Until next post,
Missy
The plan today is to keep up the walking and to sit up more in the chair. He will have the nasogastric tube clamped and if he has nausea, they will have to un-clamp it and restart the suction. If he ISN'T nauseated, they will completely remove the tube and start him slowly on liquids. I hope it goes that way and he can start the liquids. That is just one more step home! He still is producing more than average stomach fluid through the NG tube, but hopefully now that the colon is waking up, it should lessen. Another yay! He says he can't sleep very well as the bed is uncomfortable and he has to lay on his back because of the NG tube. He can sleep for only an hour at a time and then wakes up with a lot of pain. I feel for the poor guy. I wish I could do more for him!!! But his colon is slower than the second coming of Christ and was in hibernation for awhile. I HOPE this is the last GI surgery he needs. I don't think the bowel will tolerate a fifth round!!
My mother-in-law and I will be leaving shortly for another action-packed day at the hospital. We are going to stop on the way there and see if we can find him one of those pocket games that he can play. I know he misses the computer, so hopefully a little game will keep his mind occupied until he comes home.
As for me, I holding in there. I woke up stiff as a board this morning, even more than usual. My thighs feel like someone is jabbing them with knives. But no wonder with all that's been going on! The fibro is taking full advantage to make me miserable! But I will NOT let it stop me from visiting Frankie. Thank you everyone for asking how I'm doing, too, and for all your well-wishes and prayers. Every last one is precious to me. I feel honored to call each and every one of you my friend. Joining Facebook was the BEST thing I've ever done as I've found some really great friends AND I could start my very own support group, which is something I've wanted to do for a long time. So if you haven't already checked it out, please do. Just click on the butterfly image (thank you, Eileen McCarthy-Keddy for the use of her artwork!) above, underneath Jesus and it will take you right to the "FibromyWHAT?" support group. We have grown so much in such a short time and I've got a fantastic team of lead officers that have helped me out so many ways, I cannot thank them enough. And the members, too. Let's make "FibromyWHAT?" the BEST support group on Facebook!!
Happy 4th of July to every one of my American friends. BE SAFE and have a great time watchin' fireworks!! Here in AZ, so many places have been banned from doing fireworks because of the high fire danger risk, that I don't know if I'll see any fireworks. So I'll just "light" the ones I have on my farm in "Farmville" tonight.
God bless ya all,
Until next post,
Missy
Tuesday, June 29, 2010
Calgon, Take Me Away!
Hello, friends!
Hope this post finds everyone happy and as pain and stress free as you can get! After today, ANY little bit of relief I can get, I will welcome!
The day started off pretty good, my hubby called me at 7:00am from the hospital and he sounded FANTASTIC! Just like his usual self...no more slurring of his words and I could understand him the first time he told me things, no more having to go..."What, honey? I can't understand you!" He tolerated the two units of blood that he got yesterday and they were drawing labs on him this morning to check his blood count. I told him I would be at the hospital at 10am. That's when things started going down hill...
Because of the medications I take (narcotics), I have a problem with constipation. I'm sure those of you that also take narcs have the same issues. Well, my "issue" decided to relieve itself at 9:30am. No problem, I thought. I have plenty of time. I wasn't dressed yet, but that takes me all of two seconds. It's been so hot here, we Arizonans just grab whatever light shorts and shirt we can find and batabing...we are dressed! Well, it's getting to be 9:45am and I'm still on the toilet. I couldn't exactly get off...no need to go into description here, I'm sure you know what I'm talking about. It was so hard, it felt like the Sears Tower was coming out of my butt! So I'm huffin' and puffin' and finally all is taken care of. I go to flush, and the whole toilet plugs up. Wonderful!! I can't do what I always do in these situations, which is call for my wonderful husband to come unplug the toilet for me. Because of my back and right leg, it is quite painful to stand over the pot and plunge with all I'm worth....which isn't much! Anyway, I'm plunging and plunging and flushing and flushing, all the while pain and numbness and tingling are making trails all the way down my legs...yes, BOTH legs! Finally, the stupid toilet unplugs and I can move on. Yay!
I'm all sweaty and out of breath, but I manage to get into my "uniform" of shorts and a clean t-shirt. I grab my purse, my tote bag and rush out into the living room to get my shoes on, all the while Jack is meowing his little head off. I forgot to feed him! So I back track, feed the cat, put on my shoes, grab my stuff and I'm out the door into the oven blast of a state we call Arizona. We have to park our car over across the street at the neighbors (the people who lived there died and their son is taking the house over and he lives in Flagstaff and doesn't mind us using his driveway) because if we park it by the house, it's under this tree that has birds with bad cases of diarrhea...just made the car look gross and my hubby and I saved long and hard for our beautiful Camry. Anyway, I get to the car and dump everything inside and off I go. I get to the hospital and luckily, I nabbed the LAST parking spot out front by the entrance. My right drivin' leg is killing me, of course and my low back is stinging from all the toilet plunging I had to do, but I managed to make it there in one piece. I park, then have to get the walker out of the trunk and fiddle with that for awhile. I lock up and away I go to my hubby's room.
I walk in and he looks as great as he sounds! I'll have to remember to bring the camera tomorrow and take a picture to post on the blog. He still has the nasogastric tube and will have that until his colon wakes up....which it hasn't done yet. What is it, in hibernation? Anyway, he keeps dropping things on the floor and has already lost the chap stick I gave him yesterday from my own personal collection...and I loved that chap stick, too! We never did find it...or shall I say, I never did find it. But I did collect the TV remote and a few other items off the floor. Whew, I can finally sit and relax.
The doctor comes in and looks at Frankie's incision and it's all bruised, with a little blood clot over the troublesome naval area I reported about in my last post. It made my knees weak to look at that incision. The surgeon said it looked good, though, and kept it covered. Then he said that Frankie's red blood cell count is STILL low, 7.9, and he would need two more units of blood today. He can't do the walk while the blood is running, so there went my plan of having him up more today and walking! 2 units can take up to 8 hours to infuse and I would be back home by then. So I was bummed out about his lab and needing more blood. The surgeon thinks it's the Gleevec he takes for his cancer (GIST) that is suppressing his bone marrow. I have other ideas, as he has been taking the Gleevec for almost 7 years now and hasn't had his count get this low. I think he lost a lot in surgery, but of course they didn't record the amount in the chart according to the doctor so we don't know what to go on!! He said that if these two units don't bring his count up, then they would start to investigate for a bleed somewhere. I asked if that involved more surgery, and he said they would start with a CT scan first and take it from there. But Frankie doesn't LOOK like he's losing blood...no paleness and his incision is no longer bleeding, either. So I don't know...he'll have more labs tomorrow and we'll see then.
I stayed until about 6:30pm and started home to crash....on the computer, of course. I miss having the computer during the day! I started something very exciting...my own Facebook Fibromyalgia Support Group...so if you have fibro and are interested in the group, please feel free to visit the page and join. The link is up above, the group badge picture below Jesus. :0) I kept it a closed community due to all the crack pot people out there and I wanted to keep our group private and "homey." So just click join and I'll confirm it on my end and you are then a member of my group!! Cool, huh? I hope it's a big success!! I removed the FibromyWHAT? fan page so I could do the group instead. I kept getting comments about "how to join" and a lot of people wanted to be part of a group. So I deleted the page and made a group. That's me, the ever people pleaser! LOL....
My eyes are bleary, so I'm gonna call it a night. Hope you all have a good one and stay healthy.
Until next post,
Missy
Hope this post finds everyone happy and as pain and stress free as you can get! After today, ANY little bit of relief I can get, I will welcome!
The day started off pretty good, my hubby called me at 7:00am from the hospital and he sounded FANTASTIC! Just like his usual self...no more slurring of his words and I could understand him the first time he told me things, no more having to go..."What, honey? I can't understand you!" He tolerated the two units of blood that he got yesterday and they were drawing labs on him this morning to check his blood count. I told him I would be at the hospital at 10am. That's when things started going down hill...
Because of the medications I take (narcotics), I have a problem with constipation. I'm sure those of you that also take narcs have the same issues. Well, my "issue" decided to relieve itself at 9:30am. No problem, I thought. I have plenty of time. I wasn't dressed yet, but that takes me all of two seconds. It's been so hot here, we Arizonans just grab whatever light shorts and shirt we can find and batabing...we are dressed! Well, it's getting to be 9:45am and I'm still on the toilet. I couldn't exactly get off...no need to go into description here, I'm sure you know what I'm talking about. It was so hard, it felt like the Sears Tower was coming out of my butt! So I'm huffin' and puffin' and finally all is taken care of. I go to flush, and the whole toilet plugs up. Wonderful!! I can't do what I always do in these situations, which is call for my wonderful husband to come unplug the toilet for me. Because of my back and right leg, it is quite painful to stand over the pot and plunge with all I'm worth....which isn't much! Anyway, I'm plunging and plunging and flushing and flushing, all the while pain and numbness and tingling are making trails all the way down my legs...yes, BOTH legs! Finally, the stupid toilet unplugs and I can move on. Yay!
I'm all sweaty and out of breath, but I manage to get into my "uniform" of shorts and a clean t-shirt. I grab my purse, my tote bag and rush out into the living room to get my shoes on, all the while Jack is meowing his little head off. I forgot to feed him! So I back track, feed the cat, put on my shoes, grab my stuff and I'm out the door into the oven blast of a state we call Arizona. We have to park our car over across the street at the neighbors (the people who lived there died and their son is taking the house over and he lives in Flagstaff and doesn't mind us using his driveway) because if we park it by the house, it's under this tree that has birds with bad cases of diarrhea...just made the car look gross and my hubby and I saved long and hard for our beautiful Camry. Anyway, I get to the car and dump everything inside and off I go. I get to the hospital and luckily, I nabbed the LAST parking spot out front by the entrance. My right drivin' leg is killing me, of course and my low back is stinging from all the toilet plunging I had to do, but I managed to make it there in one piece. I park, then have to get the walker out of the trunk and fiddle with that for awhile. I lock up and away I go to my hubby's room.
I walk in and he looks as great as he sounds! I'll have to remember to bring the camera tomorrow and take a picture to post on the blog. He still has the nasogastric tube and will have that until his colon wakes up....which it hasn't done yet. What is it, in hibernation? Anyway, he keeps dropping things on the floor and has already lost the chap stick I gave him yesterday from my own personal collection...and I loved that chap stick, too! We never did find it...or shall I say, I never did find it. But I did collect the TV remote and a few other items off the floor. Whew, I can finally sit and relax.
The doctor comes in and looks at Frankie's incision and it's all bruised, with a little blood clot over the troublesome naval area I reported about in my last post. It made my knees weak to look at that incision. The surgeon said it looked good, though, and kept it covered. Then he said that Frankie's red blood cell count is STILL low, 7.9, and he would need two more units of blood today. He can't do the walk while the blood is running, so there went my plan of having him up more today and walking! 2 units can take up to 8 hours to infuse and I would be back home by then. So I was bummed out about his lab and needing more blood. The surgeon thinks it's the Gleevec he takes for his cancer (GIST) that is suppressing his bone marrow. I have other ideas, as he has been taking the Gleevec for almost 7 years now and hasn't had his count get this low. I think he lost a lot in surgery, but of course they didn't record the amount in the chart according to the doctor so we don't know what to go on!! He said that if these two units don't bring his count up, then they would start to investigate for a bleed somewhere. I asked if that involved more surgery, and he said they would start with a CT scan first and take it from there. But Frankie doesn't LOOK like he's losing blood...no paleness and his incision is no longer bleeding, either. So I don't know...he'll have more labs tomorrow and we'll see then.
I stayed until about 6:30pm and started home to crash....on the computer, of course. I miss having the computer during the day! I started something very exciting...my own Facebook Fibromyalgia Support Group...so if you have fibro and are interested in the group, please feel free to visit the page and join. The link is up above, the group badge picture below Jesus. :0) I kept it a closed community due to all the crack pot people out there and I wanted to keep our group private and "homey." So just click join and I'll confirm it on my end and you are then a member of my group!! Cool, huh? I hope it's a big success!! I removed the FibromyWHAT? fan page so I could do the group instead. I kept getting comments about "how to join" and a lot of people wanted to be part of a group. So I deleted the page and made a group. That's me, the ever people pleaser! LOL....
My eyes are bleary, so I'm gonna call it a night. Hope you all have a good one and stay healthy.
Until next post,
Missy
Saturday, June 26, 2010
An Even BIGGER Ouch!
Howdy, everyone!
I just got a phone call from my husband from the hospital and he sounded so scared and lonely. He's got the nasogastric tube in, so it's kind of hard to understand him. He sounds like he's talking under water most of the time. He says the tube irritates his throat. No doubt about that! They can't take the tube out until his bowel sounds return, which can take 3-5 days. And his colon is slow anyway because of the previous three bowel surgeries, so it may take even longer for him. They just removed his urinary catheter, though, so he is moving up in the world! He's hooked up to an IV and a pain pump. They had to increase his pain medications yesterday because the pain is just still so bad for him. And they added the pain pump, so he can take care of "dosing" himself by clicking a button. Pretty nifty, huh? So no waiting for the nurse to give him his pain shot. The surgeon had to remove a lot of scar tissue remaining from his other surgeries and then cut through the six groups of abdominal muscles, so no doubt he feels like he's been sawed in half!!! I just feel so badly for him, I wish I could take it on for him. I truly hope this is the last surgery for him. No more GIST, no more AVM, please, God!
I'm going to go up to the hospital even earlier today and stay all day with him. I debated staying the night last night and even though there's a nice recliner in there, it isn't THAT nice where I can get a good night sleep. And I wouldn't be able to use my pillow wedge, so my back would be killing me. So my hubby and I decided I would stay with him in the day and come home at night to sleep. That way I can be more of a help to him when he's up walking and his activities of daily living. I can't be of any help to him if myself is in flare-up! So I am taking care of myself by taking my meds, drinking lots of liquids and getting some rest. I wouldn't say plenty, but I am sleeping some. What fibro patient gets plenty of rest? LOL.....
Just wanted to update you all on Frankie's progress. He did get two walks in yesterday, so today we'll try for three. He's slow going, but doing well despite the pain and nausea he sometimes gets.
Thank you for all the well-wishes, thoughts and prayers. We really appreciate it! I have never, ever found such a sweet group of people as you guys and gals. Love ya all!!!!
Until next post,
Missy
I just got a phone call from my husband from the hospital and he sounded so scared and lonely. He's got the nasogastric tube in, so it's kind of hard to understand him. He sounds like he's talking under water most of the time. He says the tube irritates his throat. No doubt about that! They can't take the tube out until his bowel sounds return, which can take 3-5 days. And his colon is slow anyway because of the previous three bowel surgeries, so it may take even longer for him. They just removed his urinary catheter, though, so he is moving up in the world! He's hooked up to an IV and a pain pump. They had to increase his pain medications yesterday because the pain is just still so bad for him. And they added the pain pump, so he can take care of "dosing" himself by clicking a button. Pretty nifty, huh? So no waiting for the nurse to give him his pain shot. The surgeon had to remove a lot of scar tissue remaining from his other surgeries and then cut through the six groups of abdominal muscles, so no doubt he feels like he's been sawed in half!!! I just feel so badly for him, I wish I could take it on for him. I truly hope this is the last surgery for him. No more GIST, no more AVM, please, God!
I'm going to go up to the hospital even earlier today and stay all day with him. I debated staying the night last night and even though there's a nice recliner in there, it isn't THAT nice where I can get a good night sleep. And I wouldn't be able to use my pillow wedge, so my back would be killing me. So my hubby and I decided I would stay with him in the day and come home at night to sleep. That way I can be more of a help to him when he's up walking and his activities of daily living. I can't be of any help to him if myself is in flare-up! So I am taking care of myself by taking my meds, drinking lots of liquids and getting some rest. I wouldn't say plenty, but I am sleeping some. What fibro patient gets plenty of rest? LOL.....
Just wanted to update you all on Frankie's progress. He did get two walks in yesterday, so today we'll try for three. He's slow going, but doing well despite the pain and nausea he sometimes gets.
Thank you for all the well-wishes, thoughts and prayers. We really appreciate it! I have never, ever found such a sweet group of people as you guys and gals. Love ya all!!!!
Until next post,
Missy
Friday, June 25, 2010
One Big OUCH!
Hello, folks!
I am so totally glad that today is OVER with. It was one of those days that felt like it was in suspended animation...going through the motions, but just not seeming to get anywhere. Ever feel like that? Anyway, Frankie's surgery is done and over with and he's laying in a hospital bed right now with one big incision running from mid sternum (maybe just a little lower than that) to lower abdomen. No drainage, though, his dressing was dry when I looked at it before I left for home tonight. He has a catheter for urine and a nasogastric tube for any leftover liquids in his stomach. All that equals to one big OUCH! We went into his room and he was groaning and white as a ghost. The nurse had just given him Dilaudid for pain and even that wasn't even making a dent, so they were going to check the orders and see what they could do and call the surgeon if needed. I hated to have to leave him tonight, but I wasn't sure this morning that I could stay with him so I didn't have any of my things with me. He looked pretty wiped out anyway......
Oh, boy! That is what I wrote LAST NIGHT. My mother-in-law came into the computer room and woke me up at midnight. I was fast asleep at the keyboard!! I'm so sorry this post never made the light of day last night, I was so wiped out myself I fell asleep while writing it! Hope you can forgive me. Before I went to bed (what a novel idea-to sleep in a bed!) I called the hospital and Frankie was much more comfortable and asleep. That made me rest easier, too.
Ok, Frankie's surgery was a total success!! The surgeon came and told us that he had an "AVM" mass...."arterial venous malformation" which wasn't cancer at all! Just a clump of vessels in which he removed. So Frankie has NO recurrence of his cancer! Yay! It felt like a weight had been removed from our shoulders. My mother and father-in-law and sister came to be with me and waited the whole time with me in the surgical waiting area. When Frankie went INTO the surgery, the surgeon stopped and talked with us and said he would take it out IF he could and he didn't sound so sure as he had in the office the other day. That got us to worrying that the cancerous tumor couldn't be removed. The surgeon said it was attached to his small intestine. Let me tell ya, it was a LONG three hour wait, but well worth it!! :0) I'm so happy, I could dance from the roof top....well, maybe not. After sitting in those chairs for three hours, I felt molded to it! My right leg is still killing me and the muscle group in that whole leg is one big knot. I'm hoping that in time it will loosen because I think I worried so much, my fibro got control and now that muscle is a mess! But now that everything is OK again, I can get the upper hand over the fibro!
My plans for today are to go to the hospital and hopefully spend the night with Frankie. I'm his "PAL" (patient assistant liason) which is a nifty program the hospital has that a loved one can stay as long as they like and even get a 20 percent discount in the cafeteria. Cool! I can help out with Frankie's care and even go with him to tests and so forth. His room has a recliner which is pretty comfy, so hopefully it won't be too bad to sleep in. I'll give it a trial run tonight and see how I do.
Thank you so much for all your love, support, prayers, thoughts and wishes. I have never had the honor before of being part of such an awesome network of people who really care about each other. And I've been a madwoman ever since we heard the cancer might be back! So thank you for being there for us. We love and appreciate each and every one of you!!!
And again, I'm sorry this post took so long to write. I had to sleep on it, first....LOL!!!! I think I still have the imprint of the keyboard in my face......
I'll write again in a few days and update you how our patient is doing. You all have a blessed and pain free weekend!
Until next post,
Missy
I am so totally glad that today is OVER with. It was one of those days that felt like it was in suspended animation...going through the motions, but just not seeming to get anywhere. Ever feel like that? Anyway, Frankie's surgery is done and over with and he's laying in a hospital bed right now with one big incision running from mid sternum (maybe just a little lower than that) to lower abdomen. No drainage, though, his dressing was dry when I looked at it before I left for home tonight. He has a catheter for urine and a nasogastric tube for any leftover liquids in his stomach. All that equals to one big OUCH! We went into his room and he was groaning and white as a ghost. The nurse had just given him Dilaudid for pain and even that wasn't even making a dent, so they were going to check the orders and see what they could do and call the surgeon if needed. I hated to have to leave him tonight, but I wasn't sure this morning that I could stay with him so I didn't have any of my things with me. He looked pretty wiped out anyway......
Oh, boy! That is what I wrote LAST NIGHT. My mother-in-law came into the computer room and woke me up at midnight. I was fast asleep at the keyboard!! I'm so sorry this post never made the light of day last night, I was so wiped out myself I fell asleep while writing it! Hope you can forgive me. Before I went to bed (what a novel idea-to sleep in a bed!) I called the hospital and Frankie was much more comfortable and asleep. That made me rest easier, too.
Ok, Frankie's surgery was a total success!! The surgeon came and told us that he had an "AVM" mass...."arterial venous malformation" which wasn't cancer at all! Just a clump of vessels in which he removed. So Frankie has NO recurrence of his cancer! Yay! It felt like a weight had been removed from our shoulders. My mother and father-in-law and sister came to be with me and waited the whole time with me in the surgical waiting area. When Frankie went INTO the surgery, the surgeon stopped and talked with us and said he would take it out IF he could and he didn't sound so sure as he had in the office the other day. That got us to worrying that the cancerous tumor couldn't be removed. The surgeon said it was attached to his small intestine. Let me tell ya, it was a LONG three hour wait, but well worth it!! :0) I'm so happy, I could dance from the roof top....well, maybe not. After sitting in those chairs for three hours, I felt molded to it! My right leg is still killing me and the muscle group in that whole leg is one big knot. I'm hoping that in time it will loosen because I think I worried so much, my fibro got control and now that muscle is a mess! But now that everything is OK again, I can get the upper hand over the fibro!
My plans for today are to go to the hospital and hopefully spend the night with Frankie. I'm his "PAL" (patient assistant liason) which is a nifty program the hospital has that a loved one can stay as long as they like and even get a 20 percent discount in the cafeteria. Cool! I can help out with Frankie's care and even go with him to tests and so forth. His room has a recliner which is pretty comfy, so hopefully it won't be too bad to sleep in. I'll give it a trial run tonight and see how I do.
Thank you so much for all your love, support, prayers, thoughts and wishes. I have never had the honor before of being part of such an awesome network of people who really care about each other. And I've been a madwoman ever since we heard the cancer might be back! So thank you for being there for us. We love and appreciate each and every one of you!!!
And again, I'm sorry this post took so long to write. I had to sleep on it, first....LOL!!!! I think I still have the imprint of the keyboard in my face......
I'll write again in a few days and update you how our patient is doing. You all have a blessed and pain free weekend!
Until next post,
Missy
Saturday, June 19, 2010
Saturday Blahs
Hello, everyone! Today has just been a total wash out for my husband and me. I totally crashed at about 1pm and took a nap until 5pm. I got up at 6am this morning, but couldn't stay up like I always do, so I had a nap then, too, until 8am. So I've had two naps today and still feel like crapola! My back is acting up, my right leg has the usual pains going down it and when I put weight on it, that's a whole new level of pain today. My TENS unit is on the fritz...I have to scotch tape it together in order for to work but because I have the tape over it, I can't close the cover, so it looks just absolutely trashy! I can't wait until my husband gets paid....then I can get a new unit that I don't have to use tape to tape the battery in. I think that is where the short is, at some point where the battery connects to the machine. Oh, well, at least I'm not banging it on the desk to get it working like I was before.
My husband has NOT been sleeping well at all. We went to the surgeon's appointment yesterday and it was short and sweet. The doctor explained he is going to open Frankie up (using the same incision as the previous three other times...ouch!) and investigate around and get the tumor that is growing there and send it to lab for analysis. We then asked if it would be tested for the mutation markers of GIST and he said that Frankie's oncologist would be in charge of that part of the case. The surgeon said the surgery could go very easy or very hard, depending upon the amount of scare tissue and adhesions from his previous surgeries, last one being in 2004. So hopefully it will go as planned. He said Frankie would be in the hospital for 7-10 days. I will miss him! But we are going to see if I can stay with him, as a lot of hospitals now are incorporating family into the care plan and allow them to stay in the room on a cot. Frankie did that with me when I was in the hospital last year with that mammoth blood clot! I found it very comforting, as I had never been in the hospital before and I was put through some radical treatments to get rid of that clot. It's always a welcome site to have a friendly face waiting for you when you get back to your room. He was such a sweetie (as usual) to me during that time, that I'd be thrilled if I could help him out in that way, too. He really IS scared and nervous about this. But at least this time, he is going into the surgery healthier than he was before. Before he had a blood count of 3, multiple transfusions, and was bleeding out quicker than they could put it back in.
We both just can't wait until it's over. So during that time- the 24th of June to the 4th of July-when he gets out, I may not be able to update the blog as much as I'd like. But I will keep you posted as soon as I possibly can. I promise!!
My fibro has been feeling this stress and tension, no doubt. My thighs are stinging, I'm just exhausted that even walking to the bathroom tires me out, and I've been sleeping so much and getting no where. I'm taking all my medications, but they are not helping right now. I think it's just tension and stress. I want my husband to be OK.....I waited so long to meet him, love him & marry him, I will fight for all I'm worth to keep him with me on this Earth! Sorry if I sound morbid, that is just how I feel right now!!!! Nothing, not cancer especially, is taking Frankie away from me!!
So we both have been walking around at night like two ghosts, not sure what to do, but knowing we can't sleep at this time. I keep trying to get him to talk to me, but he says he's "fine." Men! They sure aren't like women....most like to talk about everything under the sun!
We did absolutely nothing today. Last night I fiddled with my blog again, trying out new lay-outs and looks and I keep coming back to the same one. Well, the wallpaper has stripes on it instead of bursts of color bars, but other than that, it's the same. I changed my page hit counter, too. As I visit other blogs, I see what they have on theirs and think, "hey, that sounds like a great idea!" and then investigate the "widget" and try it out on my blog. I'm very competitive, aren't I? Hehehehe.......
Hope this post finds you happy and healthy and enjoying your weekend. "Fibromites", hope you don't have a flare-up this weekend. I hope you can enjoy what life hands you. I hope the pain is what you can bear and no more. For my other friends that don't have FM, keep happy and healthy and understanding of those of us that do have the disease. That is half the battle right there. We need your support more than ever and it is a true blessing to get it from a valued friend or family member without having to even ask for it. :0)
Until next post,
Missy
My husband has NOT been sleeping well at all. We went to the surgeon's appointment yesterday and it was short and sweet. The doctor explained he is going to open Frankie up (using the same incision as the previous three other times...ouch!) and investigate around and get the tumor that is growing there and send it to lab for analysis. We then asked if it would be tested for the mutation markers of GIST and he said that Frankie's oncologist would be in charge of that part of the case. The surgeon said the surgery could go very easy or very hard, depending upon the amount of scare tissue and adhesions from his previous surgeries, last one being in 2004. So hopefully it will go as planned. He said Frankie would be in the hospital for 7-10 days. I will miss him! But we are going to see if I can stay with him, as a lot of hospitals now are incorporating family into the care plan and allow them to stay in the room on a cot. Frankie did that with me when I was in the hospital last year with that mammoth blood clot! I found it very comforting, as I had never been in the hospital before and I was put through some radical treatments to get rid of that clot. It's always a welcome site to have a friendly face waiting for you when you get back to your room. He was such a sweetie (as usual) to me during that time, that I'd be thrilled if I could help him out in that way, too. He really IS scared and nervous about this. But at least this time, he is going into the surgery healthier than he was before. Before he had a blood count of 3, multiple transfusions, and was bleeding out quicker than they could put it back in.
We both just can't wait until it's over. So during that time- the 24th of June to the 4th of July-when he gets out, I may not be able to update the blog as much as I'd like. But I will keep you posted as soon as I possibly can. I promise!!
My fibro has been feeling this stress and tension, no doubt. My thighs are stinging, I'm just exhausted that even walking to the bathroom tires me out, and I've been sleeping so much and getting no where. I'm taking all my medications, but they are not helping right now. I think it's just tension and stress. I want my husband to be OK.....I waited so long to meet him, love him & marry him, I will fight for all I'm worth to keep him with me on this Earth! Sorry if I sound morbid, that is just how I feel right now!!!! Nothing, not cancer especially, is taking Frankie away from me!!
So we both have been walking around at night like two ghosts, not sure what to do, but knowing we can't sleep at this time. I keep trying to get him to talk to me, but he says he's "fine." Men! They sure aren't like women....most like to talk about everything under the sun!
We did absolutely nothing today. Last night I fiddled with my blog again, trying out new lay-outs and looks and I keep coming back to the same one. Well, the wallpaper has stripes on it instead of bursts of color bars, but other than that, it's the same. I changed my page hit counter, too. As I visit other blogs, I see what they have on theirs and think, "hey, that sounds like a great idea!" and then investigate the "widget" and try it out on my blog. I'm very competitive, aren't I? Hehehehe.......
Hope this post finds you happy and healthy and enjoying your weekend. "Fibromites", hope you don't have a flare-up this weekend. I hope you can enjoy what life hands you. I hope the pain is what you can bear and no more. For my other friends that don't have FM, keep happy and healthy and understanding of those of us that do have the disease. That is half the battle right there. We need your support more than ever and it is a true blessing to get it from a valued friend or family member without having to even ask for it. :0)
Until next post,
Missy
Thursday, June 17, 2010
We Have A Date....
.....a surgery date, that is! I wish it could any other kind of date, but unfortunately for the past 7 years this has been our life. My husband and I are being shuttled off from doctor to doctor and procedures and surgeries to boot! Out of ALL the days in June they could have chosen to pick for Frankie's surgery, guess which day it is? ON MY 40TH BIRTHDAY!! So on June 24th I'll be sitting in some surgical waiting room with my family waiting for the surgeon to come out and tell us how it went. Oh, sigh. It wasn't like I had a big party planned, or any for that matter. I just was feeling a little low because my mom is not here to celebrate my 40th with me. It's like a milestone and she is missing it. I think the hardest thing for me to deal with regarding her death is that the fact that her life stopped July 8, 2008, yet mine must go on without her. For the most part, I'm over the bad grieving I went through right when she died. I think of all the happy memories we had now, instead of how sick she was when she died. I can look at pictures of her and listen to songs she loved. But every now and then....something creeps up, like my 40th birthday fast approaching, and my heart aches so badly because she is gone. But, on the positive side, my in-laws have so completely filled the void inside me and made me want to live again after my mom died. I can't thank them enough for being patient with me and guiding me along the right path...and for giving me a home to live in!! So many things....so thank you, Schranz family...ALL of you for all you have done for me. My mom would definitely be smiling down from Heaven at all the nice things you've done for me.
OK, so I got so totally off the subject!!! Sorry about that! Tomorrow at 2pm Frankie and I go to the surgeon's office to talk about what will be done. I'm very anxious to hear and have lots of questions. I want to make sure they test that tumor for everything they can test it for. And hopefully the Gleevec is still working. My husband and I have a hard time with stopping it altogether. We will be having lots of talks with the oncologist about that one! The oncologist in Tucson a few years back told us that if he ever stopped the Gleevec, the tumor would not only return, but be MORE aggressive! So I definitely have a lot of questions!!! I'll let you know how the appointment goes tomorrow.
Hope you all are having a good rest of the week. I'm gonna go get my feet up. They are sooooo swollen, I can't even bend them. So walking is definitely a challenge, I tell you! My toes look like 10 fat little piggies!! I hate this swelling and to think I'm on 40mg of Lasix a day. If I didn't take that, who knows how bad my feet would be!!
Have a good night and I love ya all!
Stay happy and healthy!
Until next post,
Missy
OK, so I got so totally off the subject!!! Sorry about that! Tomorrow at 2pm Frankie and I go to the surgeon's office to talk about what will be done. I'm very anxious to hear and have lots of questions. I want to make sure they test that tumor for everything they can test it for. And hopefully the Gleevec is still working. My husband and I have a hard time with stopping it altogether. We will be having lots of talks with the oncologist about that one! The oncologist in Tucson a few years back told us that if he ever stopped the Gleevec, the tumor would not only return, but be MORE aggressive! So I definitely have a lot of questions!!! I'll let you know how the appointment goes tomorrow.
Hope you all are having a good rest of the week. I'm gonna go get my feet up. They are sooooo swollen, I can't even bend them. So walking is definitely a challenge, I tell you! My toes look like 10 fat little piggies!! I hate this swelling and to think I'm on 40mg of Lasix a day. If I didn't take that, who knows how bad my feet would be!!
Have a good night and I love ya all!
Stay happy and healthy!
Until next post,
Missy
Monday, June 14, 2010
Another Monday Rollin' Around
Good morning, everyone! Hope you all had a great weekend, not too much pain or flare-ups for us, the "fibromites!" Unfortunately, that is NOT true for this "fibromite." I feel worse today than I did yesterday. My husband and I were like bed bugs yesterday, couldn't get up the energy to even THINK about getting up the energy! Now, that is bad! My hubby slept until noon yesterday, whereas I was up at my usual time at 5am (so I can take my first round of pills for the day....yummy!) but then konked out at 3pm and my ding dong of a husband didn't wake me until 9pm! So I was late on taking my evening meds, hadn't had dinner yet and because I slept so long, I knew I probably would be up all night and that would leave a mess on Monday with regulating my body clock "back" to the usual times. One thing that I have learned very well in my years of having fibro is that you need consistency of bedtimes. I NEVER have had consistency, due to the fact that when I was working the night shift, that is when I felt the most alive. But I did find a way to make it work where I wouldn't be in one long continual flare-up. I would stay up all night, and sleep during the day until 5pm, whether it was a work day or not. Sure, it had its problems-not a whole lot of businesses were open at 3am. So if I had a doctor's appointment, I'd make it later in the day, say anywhere from 3pm-to-closing or when my shift would start. That worked out that problem. But now that I'm not working at all, I've trained my body to the "normal" rhythm of the world-I'm awake during the day and sleep at night. What a concept!
Sleeping, I think, is the most important concept in the treatment of fibro. Sleep is when the body regenerates itself from the brutality of the day. Muscle cells repair themselves when you sleep - that really DEEP sleep, not the "cat naps" that we "fibromites" are so good at! What happens is when day after day, night after night if you are NOT getting that good, deep sleep, your muscles don't repair themselves. And then they get cranky! And then they hurt like heck and then you are officially in flare-up. When I first started the Savella for my fibro in October of 2009, I had my doubts. I'd been on so many damn drugs, I'd lost count at 109....LOL! But my rheumatologist was so insistent I take this drug, I was beginning to think he owned stock in it. He told me that he had a lot of patients that were taking it with very good results. It's some kind of seratonin and norepinephrine regulator. Since he was so nice and cute to boot, I figured, heck, what's ONE more pill? So I started it.
It got to be mid november-6 weeks or so, and the only thing I felt was aggravation. The medication caused my already high blood pressure to get higher, so much that my primary doctor increased both my blood pressure meds. Secondly, that's when the profuse sweating had started. It got to be so bad, it looked like I just came from the showers and forgot to towel down! I couldn't live that, so I stopped taking it and let him know. He said he wasn't going to change it, I just needed more time on it. It can take up to 8 weeks on some patients. That would've been nice to know! Luckily, I only stopped the day prior to the appointment, if I remember correctly. So he gave me a lot more samples, as my dear insurance wouldn't cover it. My rheumy had to write a letter to get authorization and explained to them I've been on all the medications with little to no results. Whatever he wrote them worked, because the medication was then approved for a year. And, slowly, I started sleeping better and more deeply. My husband said I was talking a lot in my sleep, too and having whole conversations! I woke up feeling refreshed for the first time in a LONG time. So finally after all the years of pills and side effects, I found one that actually worked! YIPPEE!!
Well, anyway, I think why both my husband and I feel so rough today is last week WAS rough. Between worrying about his PET scan and worrying about my cardiac tests, we were both so worn out. And it getting so hot and muggy in Phoenix. The monsoon season is upon us early this year. Oh joy, oh bliss!! And with my sweating, excess weight and the fibro and we musn't forget the slipped discs in my lower back, getting around is murder! Hopefully this week we will find out more about the surgery-like when it will be. This waiting around is for the birds. Let's just get that tumor out and forget about it already!
And, lastly, to start out this perfect week-my TENS unit is on the blink. I think it has fallen one too many times and has a short in it. I can make it work again by gently hitting it against my palm or the table top. But I will definitely need a new one when my hubby gets paid. Luckily they are not that expensive.
That pretty much is it, to start out this Monday it is enough! Hope you all are doing well. Oh...a little update on my darling dad...he has his new apartment in Michigan and even hooked up the utilities AND contacted Social Security all on his OWN, without me reminding him. Will wonders never cease? I just hope it lasts. I hope he can continue being good like this. I know he can do it, it's just HIM that doesn't know it! But maybe with having his own apartment will bolster his self esteem and act like a responsible adult. I'll be praying my lil' heart out for him....or shall I say my STRONG heart? That's what the cardiologist said about my heart. Don't ya just love good news like that?
Take care and God bless!
Until next post,
Missy
Sleeping, I think, is the most important concept in the treatment of fibro. Sleep is when the body regenerates itself from the brutality of the day. Muscle cells repair themselves when you sleep - that really DEEP sleep, not the "cat naps" that we "fibromites" are so good at! What happens is when day after day, night after night if you are NOT getting that good, deep sleep, your muscles don't repair themselves. And then they get cranky! And then they hurt like heck and then you are officially in flare-up. When I first started the Savella for my fibro in October of 2009, I had my doubts. I'd been on so many damn drugs, I'd lost count at 109....LOL! But my rheumatologist was so insistent I take this drug, I was beginning to think he owned stock in it. He told me that he had a lot of patients that were taking it with very good results. It's some kind of seratonin and norepinephrine regulator. Since he was so nice and cute to boot, I figured, heck, what's ONE more pill? So I started it.
It got to be mid november-6 weeks or so, and the only thing I felt was aggravation. The medication caused my already high blood pressure to get higher, so much that my primary doctor increased both my blood pressure meds. Secondly, that's when the profuse sweating had started. It got to be so bad, it looked like I just came from the showers and forgot to towel down! I couldn't live that, so I stopped taking it and let him know. He said he wasn't going to change it, I just needed more time on it. It can take up to 8 weeks on some patients. That would've been nice to know! Luckily, I only stopped the day prior to the appointment, if I remember correctly. So he gave me a lot more samples, as my dear insurance wouldn't cover it. My rheumy had to write a letter to get authorization and explained to them I've been on all the medications with little to no results. Whatever he wrote them worked, because the medication was then approved for a year. And, slowly, I started sleeping better and more deeply. My husband said I was talking a lot in my sleep, too and having whole conversations! I woke up feeling refreshed for the first time in a LONG time. So finally after all the years of pills and side effects, I found one that actually worked! YIPPEE!!
Well, anyway, I think why both my husband and I feel so rough today is last week WAS rough. Between worrying about his PET scan and worrying about my cardiac tests, we were both so worn out. And it getting so hot and muggy in Phoenix. The monsoon season is upon us early this year. Oh joy, oh bliss!! And with my sweating, excess weight and the fibro and we musn't forget the slipped discs in my lower back, getting around is murder! Hopefully this week we will find out more about the surgery-like when it will be. This waiting around is for the birds. Let's just get that tumor out and forget about it already!
And, lastly, to start out this perfect week-my TENS unit is on the blink. I think it has fallen one too many times and has a short in it. I can make it work again by gently hitting it against my palm or the table top. But I will definitely need a new one when my hubby gets paid. Luckily they are not that expensive.
That pretty much is it, to start out this Monday it is enough! Hope you all are doing well. Oh...a little update on my darling dad...he has his new apartment in Michigan and even hooked up the utilities AND contacted Social Security all on his OWN, without me reminding him. Will wonders never cease? I just hope it lasts. I hope he can continue being good like this. I know he can do it, it's just HIM that doesn't know it! But maybe with having his own apartment will bolster his self esteem and act like a responsible adult. I'll be praying my lil' heart out for him....or shall I say my STRONG heart? That's what the cardiologist said about my heart. Don't ya just love good news like that?
Take care and God bless!
Until next post,
Missy
Thursday, June 10, 2010
Frankie is A-Okay!!
Howdy, all! First of all, I want to thank each and everyone of you that has sent your prayers & well-wishes to Frankie during this difficult time. He greatly appreciates it and thanks you all for thinking of him. What happened today at his doctor's appointment was nothing short of a miracle. Isn't God great??
Anyway, we got to his appointment on time, but we waited and waited for about an hour before we got to see Dr. Gordon. They were wheeling some guy out on a stretcher who looked in pretty bad shape, so we thought maybe that is what had him tied up for a while. So we waited some more. Finally, the secretary took some pity on us and lead us back to Dr. Gordon's office area to find out what the problem was. Come to find out, his medical assistant flew the coop and didn't tell anyone where she was going, so Dr. Gordon had NO clue that Frankie and I were waiting to see him! Dr. Gordon comes into the exam room all flustered and apologetic and explains the story to us. We completely understood....and come to find out, the medical assistant had a family emergency with her son. She could have told someone about it, but what do I know???? LOL...
Dr. Gordon takes the PET scan results out of an envelope and Frankie and I both gulp and look at each other. The moment of truth boiled down to a piece of paper inside an envelope!! Never had such a piece of paper been that important to us!! Dr. Gordon read the report and showed us the pictures and said that NO new areas were identified on the scans. So only the one centimeter growth was shown as "red" on the PET scan. We breathed collective sighs of relief. No spreading or anything, which is what we feared the most. Dr. Gordon also stated that Frankie may be able to come off of the Gleevec post-op, depending on what they find out at the time of surgery about what kind of tumor it is. He may need to continue for another year and then go off. But to go from being told back in 2003 that the tumor is huge and he would be on Gleevec forever to now....where the old tumor is NO longer seen on the scans as if it were never there at all...we both didn't know what to say or what to do!! So now we just wait to hear what the surgeon has in mind and when the surgery is. I'll keep you all posted.
We come home to have a phone call from my cardiologist telling me that the doctor I had been seeing is NO longer seeing patients in the office, only in the hospital now. So I have to start over with a new doctor! Oh, well, I only saw the one doctor once and he left notes in my chart along with my test results, so hopefully everything will work out OK tomorrow for me. Let's keep our fingers crossed and prayers flowing again!!!
Tonight we had a very odd thing happen with our computer. Frankie put in a music CD to listen to and it was just a playing along and all of a sudden, we heard a shattering sound inside the CD drive! At first we couldn't get the door open, the button was jammed. I jimmied it with a tool, and then we couldn't get the damn door to stay closed! The drive kept coming in and out, each time spitting out chewed up CD onto the carpet. It's all inside the drive, though and it no longer works. So Frankie called tech support and of course, it was after closing hours, so they will give us a call tomorrow. Hopefully not at the same time as my appointment!! What are the chances of THAT? All it needs is a new drive replaced and it's good as new. So hopefully we can have that taken care of here at home and real quick. I don't want to have to send it out...it takes forever to come back!!!! :(
Well, my eyes can no longer focus and my feet are big as houses, so I'm gonna go to bed and get my feet elevated on my special pillow. Hopefully I'll have a computer to use tomorrow to report on how MY tests and appointment went, but I'll keep you all informed as soon as I can. Hope you each have a happy and well rested night!!!!
I love you all!
Until next post,
Missy
Anyway, we got to his appointment on time, but we waited and waited for about an hour before we got to see Dr. Gordon. They were wheeling some guy out on a stretcher who looked in pretty bad shape, so we thought maybe that is what had him tied up for a while. So we waited some more. Finally, the secretary took some pity on us and lead us back to Dr. Gordon's office area to find out what the problem was. Come to find out, his medical assistant flew the coop and didn't tell anyone where she was going, so Dr. Gordon had NO clue that Frankie and I were waiting to see him! Dr. Gordon comes into the exam room all flustered and apologetic and explains the story to us. We completely understood....and come to find out, the medical assistant had a family emergency with her son. She could have told someone about it, but what do I know???? LOL...
Dr. Gordon takes the PET scan results out of an envelope and Frankie and I both gulp and look at each other. The moment of truth boiled down to a piece of paper inside an envelope!! Never had such a piece of paper been that important to us!! Dr. Gordon read the report and showed us the pictures and said that NO new areas were identified on the scans. So only the one centimeter growth was shown as "red" on the PET scan. We breathed collective sighs of relief. No spreading or anything, which is what we feared the most. Dr. Gordon also stated that Frankie may be able to come off of the Gleevec post-op, depending on what they find out at the time of surgery about what kind of tumor it is. He may need to continue for another year and then go off. But to go from being told back in 2003 that the tumor is huge and he would be on Gleevec forever to now....where the old tumor is NO longer seen on the scans as if it were never there at all...we both didn't know what to say or what to do!! So now we just wait to hear what the surgeon has in mind and when the surgery is. I'll keep you all posted.
We come home to have a phone call from my cardiologist telling me that the doctor I had been seeing is NO longer seeing patients in the office, only in the hospital now. So I have to start over with a new doctor! Oh, well, I only saw the one doctor once and he left notes in my chart along with my test results, so hopefully everything will work out OK tomorrow for me. Let's keep our fingers crossed and prayers flowing again!!!
Tonight we had a very odd thing happen with our computer. Frankie put in a music CD to listen to and it was just a playing along and all of a sudden, we heard a shattering sound inside the CD drive! At first we couldn't get the door open, the button was jammed. I jimmied it with a tool, and then we couldn't get the damn door to stay closed! The drive kept coming in and out, each time spitting out chewed up CD onto the carpet. It's all inside the drive, though and it no longer works. So Frankie called tech support and of course, it was after closing hours, so they will give us a call tomorrow. Hopefully not at the same time as my appointment!! What are the chances of THAT? All it needs is a new drive replaced and it's good as new. So hopefully we can have that taken care of here at home and real quick. I don't want to have to send it out...it takes forever to come back!!!! :(
Well, my eyes can no longer focus and my feet are big as houses, so I'm gonna go to bed and get my feet elevated on my special pillow. Hopefully I'll have a computer to use tomorrow to report on how MY tests and appointment went, but I'll keep you all informed as soon as I can. Hope you each have a happy and well rested night!!!!
I love you all!
Until next post,
Missy
Friday, June 4, 2010
A Little Good News This Time
Howdy, everyone! Just wanted to write real quick and let you know how Frankie's test turned out. We've had a really long day and both of us are exhausted, but it turned out OK. The surgeon came out and talked with me while Frankie was in the recovery area and he said that his stomach was completely clean, didn't see a tumor or mass anywhere. This had had happened once before, when we very first got to Phoenix after my mom died. Frankie was having some problems swallowing and he told the primary doctor, who then referred him out to the gastro-intestinal specialist who then did an EGD...the test where they take a scope that has a camera on the end and put it in your mouth, down your throat and into your stomach and portions of the small intestine. At that time, he had a CT scan that showed a "shadow" in his stomach, so they did the EGD to confirm as we thought the GIST was coming back. BUT, at that time like this time right now, it was a false alarm and they couldn't find anything then, either. Thank God above!!!!
Now we wait for the PET scan results and then he will be scheduled for surgery to have the little tumor removed from his small intestine and biopsied for cancer. Keep your fingers crossed that Frankie will dodge the bullet again and miss having a relapse. That would be absolutely fantastic!!!!
Oh, and I drove us home without glitch....after my mother-in-law and I found him! We were told the wrong suite number, so when we came, we parked in the lot by the outpatient clinic. He was going to the endoscopy lab, though, and we had to hike it to the hospital and of course, my walker was at home as I forgot to put it back into the trunk after our shopping expedition last night!! I made it, though, and when he was ready to go home, my mother-in-law and me hiked it back out through the hospital and the outpatient clinic and got the car. Then, we couldn't find the main entrance. After a little comedy of errors, we did find Frankie and as I went past, he was in the wheelchair waiting for us and he gave me a little wave. He's so sweet!!!
My legs are killing and it's Frankie's turn for the computer so I'll close this post. I hope you all are doing well and are happy.
Until next post,
Missy
Now we wait for the PET scan results and then he will be scheduled for surgery to have the little tumor removed from his small intestine and biopsied for cancer. Keep your fingers crossed that Frankie will dodge the bullet again and miss having a relapse. That would be absolutely fantastic!!!!
Oh, and I drove us home without glitch....after my mother-in-law and I found him! We were told the wrong suite number, so when we came, we parked in the lot by the outpatient clinic. He was going to the endoscopy lab, though, and we had to hike it to the hospital and of course, my walker was at home as I forgot to put it back into the trunk after our shopping expedition last night!! I made it, though, and when he was ready to go home, my mother-in-law and me hiked it back out through the hospital and the outpatient clinic and got the car. Then, we couldn't find the main entrance. After a little comedy of errors, we did find Frankie and as I went past, he was in the wheelchair waiting for us and he gave me a little wave. He's so sweet!!!
My legs are killing and it's Frankie's turn for the computer so I'll close this post. I hope you all are doing well and are happy.
Until next post,
Missy
Wednesday, June 2, 2010
In The Midst Of "Fibro Fog"
Hello, everyone!
Whew, this is one day that I am glad is almost over. I am so tired, I can barely keep my eyes open and it's not even 6pm yet! Pretty soon my husband and I will have the same bedtime as the school children, or going to bed as the sun is doing down! Gone are the days of young, where I'd be revving up to live the night life. In my teens and twenties, I LOVED the night life and felt more alive and functional. The mornings would be horrible for me and I couldn't ever get awake before 1pm most afternoons. That is why when I worked, I worked the night shift. Not because it's quieter (anyone who says THAT obviously works days as night shift was NOT quiet at any hospital I ever worked at!) but because I was a lot less stiff and my joints had a long head start to be functional by the time my shift started at 7pm. And the infamous "fibro fog" would have lifted by that time, too. Not always, but most times.
I don't know if I ever explained the term "fibro fog" to those of you that don't have fibro. It's a condition that renders your brain completely blank at certain times of the day or night. It brings no warning....one minute it's here and you couldn't have a rational thought to save your life and then the next minute it's gone, and you can think again! It like a heavy blanket over your brain....it just gets "dull" if you know what I mean. That's the best way I know how to explain "fibro fog." It just makes you feel numb and dumb!!! People ask a question and you just sort of stare back at them, not knowing what on earth they are talking about!! I guess when you are older, it's called having a "senior moment." Whatever the name, it sucks!!! And I've been in this fog on and off for a matter of a month now! When I need my brain the most, it takes a hike!!!
Anyway, today Frankie had his PET scan that will show his surgeon if he has any "hot" spots inside him of cancerous activity. Cancer cells grow much quicker and use up glucose, so with this test, he is injected with a radioactive dye based on glucose so the cells inside him that "gobble" the glucose up the quickest will light up on the scanner as being "hot" or red spots. This means that that area of his body has a tumor there that is quickly growing and using glucose. If nothing is seen on the scanner, then he is "cold" as nothing has eaten the glucose injected inside his system. We are hoping that is the case. But, if worse comes to worse, we are catching this at the very earliest stage and treatment options are much better. In Frankie's case, the only options are surgery and that medication called Gleevec or Sutent. We will know much more after the surgeon gets the results and see what course of treatment he should be started on.
I'd be lying if I said Frankie and I are taking this well. We are both very scared and worried inside. We've dealt with this before and thought our battles were over, but nothing, I"m finding out, is EVER really over with. It just kind of lurks in the background, waiting to pounce. We both haven't been sleeping well, so naturally my fibro is taking full advantage of this fact and the "fog" is worse than ever. I don't even know what day it is, for Heaven's sake! I didn't learn until late last night it was Tuesday, not Monday like I had thought! So I missed "Hell's Kitchen" premier because I thought it was Monday night! :( I swear, I need a keeper! Frankie and I have so much going on at the same time, our appointment book is just a big mess. If we didn't have doctors to go to, we'd have no where to go!!!
The swelling in my feet has been horrendous today. My shoes gouged into my feet, leaving deep crevices in them that hurt sooooo bad. After I write this post, I'm going to lay down, prop them up, and call it a night. I waited over 2 hours in the little waiting room at the PET scan place and just sweat my butt off as I don't think they had air on in there. It got to be 97 degrees today and my hair was just soaked. The receptionist felt for me and said, "I turned the air up more for you!" (Is it up or down for cooler? See-that fog again!!) ANYWAY, when the test was over we got back out onto the roads of rush hour Phoenix. My favorite time of day!! But we finally go home and I took off my damp clothes and got into my nightshirt. My feet are KILLING me....swollen, pain, pins and needles, everything rolled into one. Tomorrow I gotta go shoe shopping at Walmart and get a larger shoe. Hopefully they can find the cause of my swelling and fix it. I keep praying for that!!!!
Well, next on the calendar is Frankie's test on Friday where the surgeon takes a camera down his esophagus into his stomach and examines what is down there. Hopefully NOTHING is there. Then he will inspect a little of the small intestine. Maybe take some biopsies if able. Then we see what happens with the biopsies and when he will be scheduled for surgery to have them removed. So please keep us in your thoughts & prayers. We need 'em and we pray for you, too.
I'm gonna close and give my poor brain a break. The heat is here to stay in Phoenix, we'll be up to 110 by the early part of next week. Why can't we have these health crises during the winter?????
Hope you all are happy and healthy and thank you for "following" me along with my stories.
Until next post,
Missy
Whew, this is one day that I am glad is almost over. I am so tired, I can barely keep my eyes open and it's not even 6pm yet! Pretty soon my husband and I will have the same bedtime as the school children, or going to bed as the sun is doing down! Gone are the days of young, where I'd be revving up to live the night life. In my teens and twenties, I LOVED the night life and felt more alive and functional. The mornings would be horrible for me and I couldn't ever get awake before 1pm most afternoons. That is why when I worked, I worked the night shift. Not because it's quieter (anyone who says THAT obviously works days as night shift was NOT quiet at any hospital I ever worked at!) but because I was a lot less stiff and my joints had a long head start to be functional by the time my shift started at 7pm. And the infamous "fibro fog" would have lifted by that time, too. Not always, but most times.
I don't know if I ever explained the term "fibro fog" to those of you that don't have fibro. It's a condition that renders your brain completely blank at certain times of the day or night. It brings no warning....one minute it's here and you couldn't have a rational thought to save your life and then the next minute it's gone, and you can think again! It like a heavy blanket over your brain....it just gets "dull" if you know what I mean. That's the best way I know how to explain "fibro fog." It just makes you feel numb and dumb!!! People ask a question and you just sort of stare back at them, not knowing what on earth they are talking about!! I guess when you are older, it's called having a "senior moment." Whatever the name, it sucks!!! And I've been in this fog on and off for a matter of a month now! When I need my brain the most, it takes a hike!!!
Anyway, today Frankie had his PET scan that will show his surgeon if he has any "hot" spots inside him of cancerous activity. Cancer cells grow much quicker and use up glucose, so with this test, he is injected with a radioactive dye based on glucose so the cells inside him that "gobble" the glucose up the quickest will light up on the scanner as being "hot" or red spots. This means that that area of his body has a tumor there that is quickly growing and using glucose. If nothing is seen on the scanner, then he is "cold" as nothing has eaten the glucose injected inside his system. We are hoping that is the case. But, if worse comes to worse, we are catching this at the very earliest stage and treatment options are much better. In Frankie's case, the only options are surgery and that medication called Gleevec or Sutent. We will know much more after the surgeon gets the results and see what course of treatment he should be started on.
I'd be lying if I said Frankie and I are taking this well. We are both very scared and worried inside. We've dealt with this before and thought our battles were over, but nothing, I"m finding out, is EVER really over with. It just kind of lurks in the background, waiting to pounce. We both haven't been sleeping well, so naturally my fibro is taking full advantage of this fact and the "fog" is worse than ever. I don't even know what day it is, for Heaven's sake! I didn't learn until late last night it was Tuesday, not Monday like I had thought! So I missed "Hell's Kitchen" premier because I thought it was Monday night! :( I swear, I need a keeper! Frankie and I have so much going on at the same time, our appointment book is just a big mess. If we didn't have doctors to go to, we'd have no where to go!!!
The swelling in my feet has been horrendous today. My shoes gouged into my feet, leaving deep crevices in them that hurt sooooo bad. After I write this post, I'm going to lay down, prop them up, and call it a night. I waited over 2 hours in the little waiting room at the PET scan place and just sweat my butt off as I don't think they had air on in there. It got to be 97 degrees today and my hair was just soaked. The receptionist felt for me and said, "I turned the air up more for you!" (Is it up or down for cooler? See-that fog again!!) ANYWAY, when the test was over we got back out onto the roads of rush hour Phoenix. My favorite time of day!! But we finally go home and I took off my damp clothes and got into my nightshirt. My feet are KILLING me....swollen, pain, pins and needles, everything rolled into one. Tomorrow I gotta go shoe shopping at Walmart and get a larger shoe. Hopefully they can find the cause of my swelling and fix it. I keep praying for that!!!!
Well, next on the calendar is Frankie's test on Friday where the surgeon takes a camera down his esophagus into his stomach and examines what is down there. Hopefully NOTHING is there. Then he will inspect a little of the small intestine. Maybe take some biopsies if able. Then we see what happens with the biopsies and when he will be scheduled for surgery to have them removed. So please keep us in your thoughts & prayers. We need 'em and we pray for you, too.
I'm gonna close and give my poor brain a break. The heat is here to stay in Phoenix, we'll be up to 110 by the early part of next week. Why can't we have these health crises during the winter?????
Hope you all are happy and healthy and thank you for "following" me along with my stories.
Until next post,
Missy
Tuesday, June 1, 2010
Merry-Go-Round
Good afternoon, everyone! Hope you all had a terrific Memorial Day yesterday. I honored my grandfather for his service in the US Army during WWII as a MP (Military Police.) He was very proud to serve his country and was in the Army for 4 years, 2 of those years overseas in France and Belgium. He didn't talk a lot about his Army days, just that Belgium was the most beautiful place he had ever seen. I miss my grandpa, he died in June of 1993 of end stage Alzheimer's and stroke. I am glad he is no longer suffering or scared to be locked inside a brain that doesn't know who the people around you are, or even yourself! Damn Alzheimer's disease! I could go on and on about how horrible Alzheimer's is, but we all know by now what devastating effects it has on the WHOLE family. I know I do - and I never want to go through that again!!!!
I woke up today feeling really crappy. Extremely exhausted (as if I'd been partying all night - I WISH!) and achy from head to toe. I took my morning pills, but they didn't work this time...just add to the exhaustion that I started out with. There's so much work to be done around the house, and I can't do any of it. My back is so bad, bending down is a nightmare. My legs feel like something is biting them, I feel little "pinches" down on the tops of my swollen feet. When I go to look, of course, nothing is there. And then they start to itch. When I scratch them, I get that all too familiar "pins and needles" sensation that lasts any where from 5-30 minutes. Then the pain starts back up. Around and around we go.....I'm on the symptom merry-go-round and where she stops....nobody knows!!!
For me, the most difficult thing about having fibromyalgia is the unknown. You really don't know what will be affected next-your arms, your legs, your whole body. You can't really plan anything, because on the day of whatever it is you want to do, you could wake up with a really bad flare-up and not be able to do anything! Then when you call to cancel, your friends or family think it's something personal. No matter how much you explain it's not them and you are NOT antisocial, they just don't seem to get it. There really is no set of words you can use to make them understand. What I figure is, if the person thinks you are important enough to TRY and understand your position and accepts you for who you are, great. If not, they really aren't good friend material anyway. And if it turns out to be family, then that's really sad that they can't take the time to investigate about fibro and what you are going through. In the years since I've been diagnosed, I've run into many types of scenarios. Especially with friends and my boss at the hospital. I've lost a few friends and many jobs due to the fibro and while it wasn't really my fault, it still hurts like hell that how people in the MEDICAL field could shun me for having to go home sick or not being able to come in for a shift. What the killer was when I did go into work and one of my co-workers would be ill, they would get entirely different reaction to their situation. "Oh, you should go home! You are sick!" I would get so irritated....why is THEIR illness more important than mine? Ughhhhhh.....how I remember those days when I was working. Now that I can't work at all and I can't seem to convince Social Security of that fact, I have all the time in the world to remember those old feelings I would get over preferential treatment handed out at my work place. I was never the preferred one!!
Fibro is really something else, I tell ya. Just when you think you have a handle on it, the handle breaks. I don't remember when I was in remission last from the fibro. The RA we have a good handle on with the Arava that I take for it, and Celebrex. I started on Savella last November and it took 8-9 weeks to totally kick in. It's a medication newly released for the treatment of fibromyalgia. I was so excited! NO medication had been "officially" listed for fibro, so this is a milestone. It regulates two neurotransmitters in the brain: seritonin and norephinephrine. I began taking it and like most everyone else, you think you should get an immediate response. I continued to take it and felt nothing different. Just right when I was going to stop, my rheumatologist convinced me to continue it for two more weeks. He was so emphatic about it, I wondered if he held stock in it or something! I did what he said and continued it for two more weeks. My insurance wouldn't cover it, so he'd been giving me dozens of free samples.
Finally, at about the 9th week, I felt better. A little more energy. I slept better, deeper. In fact, my husband said I turned into quite the sleep "talker." I'd have whole conversations in my sleep! When I told the rheumy that, he said it was normal. And normal to have the vivid dreams I'd been having. It also raised my blood pressure quite significantly, so my blood pressure meds needed adjusting, but after that, it returned to its baseline.
Because the insurance wouldn't pay for it, the doc wrote a letter to them and within the week, I kid you not, I had the medication all paid for by my insurance! I don't know what he said, but I like it! So I've been taking both Savella and Paxil for the fibro and some residual depression I have over my mom's death almost two years ago. I haven't had a problem with taking them both and am closely monitored.
I think I started to feel bad again because of many stressors in my life. My dad was acting up in Michigan and had a nervous breakdown and had to be taken to the VA hospital psych ward, but then was released (I think he just walked out as he was there under voluntary status after the initial 72 hour hold). He told me he was reviewed by a panel of 20 doctors who thought that after 40 years of abusing his medications, he's all better after one week of treatment! Oh, come on! And the moon is made of swiss cheese! I lectured him, told him this was his last option, as his sister can't allow him in her home anymore. Plus, he had punched holes in her wall and grabbed her arm when she wanted to leave. She was rightfully afraid of him. So was I. I still am, knowing what he is capable of when he can't get his drugs. Frankie and I just can't deal with that anymore. We finally have a relationship and I'm no longer pestered by my dad wanting more and more of my pain pills. I miss him and love him, sure. But that is where the line is drawn.
My dad never did stay in the VA rehab program. He went to a few sessions and now is staying with old family friends. I hear he is looking for an apartment for seniors and actually found one with a rent he can afford. He filed an application and I believe he moves in soon. Of course, he has no furniture, but he can worry about that. I have enough of my plate.
My other worries are of course, my swollen feet. But I'll find out if anything is up with my heart on June 11th. I figure it's nothing too bad or they would see me sooner, right? I haven't heard a thing about the sleep studies yet. And then my sweet, dear hubby. Having to go through this cancer crap again. I feel so badly for him. But we will get through this together. The surgeon has his test planned for this coming Friday to look down into his stomach and see what the "shadow" is that showed on the cat scan he had last week. He'll get the PET scan tomorrow. And probably surgery next week or the following. I'm glad they are moving fast...get rid of it as soon as possible!!!!
Well, my dear friends, my eyes are blurry and weary and the "fibro fog" is setting in fast. I can't remember what I wrote here, so please forgive me if I've repeated myself or gone off into the twilight zone. Just beam me back! I hope and pray for a better day tomorrow.
I hope you all are well.
Until next post,
Missy
I woke up today feeling really crappy. Extremely exhausted (as if I'd been partying all night - I WISH!) and achy from head to toe. I took my morning pills, but they didn't work this time...just add to the exhaustion that I started out with. There's so much work to be done around the house, and I can't do any of it. My back is so bad, bending down is a nightmare. My legs feel like something is biting them, I feel little "pinches" down on the tops of my swollen feet. When I go to look, of course, nothing is there. And then they start to itch. When I scratch them, I get that all too familiar "pins and needles" sensation that lasts any where from 5-30 minutes. Then the pain starts back up. Around and around we go.....I'm on the symptom merry-go-round and where she stops....nobody knows!!!
For me, the most difficult thing about having fibromyalgia is the unknown. You really don't know what will be affected next-your arms, your legs, your whole body. You can't really plan anything, because on the day of whatever it is you want to do, you could wake up with a really bad flare-up and not be able to do anything! Then when you call to cancel, your friends or family think it's something personal. No matter how much you explain it's not them and you are NOT antisocial, they just don't seem to get it. There really is no set of words you can use to make them understand. What I figure is, if the person thinks you are important enough to TRY and understand your position and accepts you for who you are, great. If not, they really aren't good friend material anyway. And if it turns out to be family, then that's really sad that they can't take the time to investigate about fibro and what you are going through. In the years since I've been diagnosed, I've run into many types of scenarios. Especially with friends and my boss at the hospital. I've lost a few friends and many jobs due to the fibro and while it wasn't really my fault, it still hurts like hell that how people in the MEDICAL field could shun me for having to go home sick or not being able to come in for a shift. What the killer was when I did go into work and one of my co-workers would be ill, they would get entirely different reaction to their situation. "Oh, you should go home! You are sick!" I would get so irritated....why is THEIR illness more important than mine? Ughhhhhh.....how I remember those days when I was working. Now that I can't work at all and I can't seem to convince Social Security of that fact, I have all the time in the world to remember those old feelings I would get over preferential treatment handed out at my work place. I was never the preferred one!!
Fibro is really something else, I tell ya. Just when you think you have a handle on it, the handle breaks. I don't remember when I was in remission last from the fibro. The RA we have a good handle on with the Arava that I take for it, and Celebrex. I started on Savella last November and it took 8-9 weeks to totally kick in. It's a medication newly released for the treatment of fibromyalgia. I was so excited! NO medication had been "officially" listed for fibro, so this is a milestone. It regulates two neurotransmitters in the brain: seritonin and norephinephrine. I began taking it and like most everyone else, you think you should get an immediate response. I continued to take it and felt nothing different. Just right when I was going to stop, my rheumatologist convinced me to continue it for two more weeks. He was so emphatic about it, I wondered if he held stock in it or something! I did what he said and continued it for two more weeks. My insurance wouldn't cover it, so he'd been giving me dozens of free samples.
Finally, at about the 9th week, I felt better. A little more energy. I slept better, deeper. In fact, my husband said I turned into quite the sleep "talker." I'd have whole conversations in my sleep! When I told the rheumy that, he said it was normal. And normal to have the vivid dreams I'd been having. It also raised my blood pressure quite significantly, so my blood pressure meds needed adjusting, but after that, it returned to its baseline.
Because the insurance wouldn't pay for it, the doc wrote a letter to them and within the week, I kid you not, I had the medication all paid for by my insurance! I don't know what he said, but I like it! So I've been taking both Savella and Paxil for the fibro and some residual depression I have over my mom's death almost two years ago. I haven't had a problem with taking them both and am closely monitored.
I think I started to feel bad again because of many stressors in my life. My dad was acting up in Michigan and had a nervous breakdown and had to be taken to the VA hospital psych ward, but then was released (I think he just walked out as he was there under voluntary status after the initial 72 hour hold). He told me he was reviewed by a panel of 20 doctors who thought that after 40 years of abusing his medications, he's all better after one week of treatment! Oh, come on! And the moon is made of swiss cheese! I lectured him, told him this was his last option, as his sister can't allow him in her home anymore. Plus, he had punched holes in her wall and grabbed her arm when she wanted to leave. She was rightfully afraid of him. So was I. I still am, knowing what he is capable of when he can't get his drugs. Frankie and I just can't deal with that anymore. We finally have a relationship and I'm no longer pestered by my dad wanting more and more of my pain pills. I miss him and love him, sure. But that is where the line is drawn.
My dad never did stay in the VA rehab program. He went to a few sessions and now is staying with old family friends. I hear he is looking for an apartment for seniors and actually found one with a rent he can afford. He filed an application and I believe he moves in soon. Of course, he has no furniture, but he can worry about that. I have enough of my plate.
My other worries are of course, my swollen feet. But I'll find out if anything is up with my heart on June 11th. I figure it's nothing too bad or they would see me sooner, right? I haven't heard a thing about the sleep studies yet. And then my sweet, dear hubby. Having to go through this cancer crap again. I feel so badly for him. But we will get through this together. The surgeon has his test planned for this coming Friday to look down into his stomach and see what the "shadow" is that showed on the cat scan he had last week. He'll get the PET scan tomorrow. And probably surgery next week or the following. I'm glad they are moving fast...get rid of it as soon as possible!!!!
Well, my dear friends, my eyes are blurry and weary and the "fibro fog" is setting in fast. I can't remember what I wrote here, so please forgive me if I've repeated myself or gone off into the twilight zone. Just beam me back! I hope and pray for a better day tomorrow.
I hope you all are well.
Until next post,
Missy
Sunday, May 30, 2010
Reflections
Hello! I'll just jump right in by saying that my husband finally got a bit of good news yesterday when we visited the new surgeon in Scottsdale. I really liked him-he's young, aggressive and knew all about Frankie's case because his oncologist had been calling him all week to fill him in on the specifics. Because these tumors have a tendency to be very quick in growing when they recur, I'm so glad that they are not wasting any time with getting him treated. The game plan is he will have a test next week-on Thursday or Friday-to check his stomach and see what is in there. We are hoping it is just a blob of undigested contrast (ewe!) as opposed to a tumor. If it IS a tumor, then when he is in surgery for his intestine, they will remove the tumor and part of his stomach at that time. You are probably asking yourself at this point, "where's the good news?" The good news is that Frankie's oncologist doesn't believe the tumor in his intestine has spread to ANYTHING else. Which makes it very easy to take care of with surgical removal and continue the Gleevec. If it had spread, then he more than likely would have been switched from Gleevec to the other drug, Sutent, which has a list of side effects that would stretch the Great Wall of China! The surgeon told us that Frankie's surgery would be probably in two weeks. I will be so glad-and so will Frankie!-to get this over with.
I was looking through some pictures of my family today and I got into a real reflective mood. I'm going to be turning 40 next month and what have I done with my life? Sure, I studied hard in school and graduated with honors from nursing school in 1993 and worked hard at whatever job I had for a solid 14 years. I managed to overcome my speech impediment (I went to a training course for stutterers in Norfolk, VA in 1999 and I have a fluency rate of about 90% now! So if you know of anyone in need of such a course, email me and I will give you the details) AND I worked with the fibromyalgia going in and out of flare-ups. Then the RA diagnosis came in 2004, but we caught that so early, no damage has been done so far. I take Arava for it and I am in remission for the RA.
Despite all that I have overcome, here I sit, unemployed, I can't work because the slipped discs in my back hurt so bad and are sending shooting pains down to my toes of both feet and my feet are so swollen, you can see the line imprint on my skin from my socks! I take enough morphine to choke a horse and besides that, I take 22 other medications to get me through the day. We are living with my husband's folks (which I am so grateful for all they have done for us-I love them to pieces!) it's just that Frankie and I want to get our stuff from San Antonio and move into our own apartment and get on with life. Every time we think we are on top of things, something happens. We can't save very much money, because Social Security won't give me what I deserve and we just have my husband's disability check to go on. Take away our monthly expenses and there isn't too much left!
I don't mean to go on and on. Forgive me. I AM grateful for all that God has given us and I can't say enough how much I appreciate Frankie's family for taking me (and my dad, for awhile until he screwed up and was booted back to Michigan!) on as one of their own. I've never had siblings, so it's so much fun to think of my sister-in-law Barbara as my real sister. She IS my real sister! I feel I can talk to her about anything, as with my mother-in-law. My husband's brother Doug lives in Wisconsin, so we aren't too close with him due to the distance. I also miss my old life, too. I miss my mom and my dad and all the fun times we had. I'm so glad I took a lot of pictures of all our adventures and when we would goof around at home. I'm glad I have every single one of them to cherish forever-because they are all I have. My mom is gone forever and my dad.....he's a whole story in himself. I will talk about that in later blogs. He has a lot of problems and I wish him well in Michigan, I truly do. It's just that we can't live together anymore because he is a user and I can't deal with that anymore. I grew up knowing my dad had a problem with prescription drugs and now that I have a life WITHOUT having to worry about if he is going to throw a fit because the pharmacy won't fill his prescription because it's too soon, I don't want to go back to that old life. Yet I miss certain aspects of it. I'm confused! And just very depressed because I gained a lot of weight, so I can't have my back surgery until I lose that weight, so I can't work until I lose weight to have the surgery so I can work again! I'm just in one big vicious cycle that has my head spinning so fast, I'm dizzy.
Looking at those pictures of happier times with my mom and dad has made me very nostalgic. I wish I felt like I did back then, only back then I took it all for granted. Whoever said that "youth is wasted on the young" was very wise. Oh, how true that is!! I've learned one big lesson from all my reflecting and it's this: don't ever take for granted the things and people in your life. Because one day, when the fun is over and it's time for everyone to go home, if you took it for granted then that time of your life is gone forever. Live for today and take time to stop and smell the roses. But don't smell too much because if you are allergic or have hay fever, then boy will you regret that! LOL! I know, stupid joke. I have a lot of them!!!
Hope you all are happy and well and Happy Memorial day on Monday. Thank you to all who have served our country and lost their lives for our freedom. I don't ever want to take THAT for granted either.
Until next post,
Missy
I was looking through some pictures of my family today and I got into a real reflective mood. I'm going to be turning 40 next month and what have I done with my life? Sure, I studied hard in school and graduated with honors from nursing school in 1993 and worked hard at whatever job I had for a solid 14 years. I managed to overcome my speech impediment (I went to a training course for stutterers in Norfolk, VA in 1999 and I have a fluency rate of about 90% now! So if you know of anyone in need of such a course, email me and I will give you the details) AND I worked with the fibromyalgia going in and out of flare-ups. Then the RA diagnosis came in 2004, but we caught that so early, no damage has been done so far. I take Arava for it and I am in remission for the RA.
Despite all that I have overcome, here I sit, unemployed, I can't work because the slipped discs in my back hurt so bad and are sending shooting pains down to my toes of both feet and my feet are so swollen, you can see the line imprint on my skin from my socks! I take enough morphine to choke a horse and besides that, I take 22 other medications to get me through the day. We are living with my husband's folks (which I am so grateful for all they have done for us-I love them to pieces!) it's just that Frankie and I want to get our stuff from San Antonio and move into our own apartment and get on with life. Every time we think we are on top of things, something happens. We can't save very much money, because Social Security won't give me what I deserve and we just have my husband's disability check to go on. Take away our monthly expenses and there isn't too much left!
I don't mean to go on and on. Forgive me. I AM grateful for all that God has given us and I can't say enough how much I appreciate Frankie's family for taking me (and my dad, for awhile until he screwed up and was booted back to Michigan!) on as one of their own. I've never had siblings, so it's so much fun to think of my sister-in-law Barbara as my real sister. She IS my real sister! I feel I can talk to her about anything, as with my mother-in-law. My husband's brother Doug lives in Wisconsin, so we aren't too close with him due to the distance. I also miss my old life, too. I miss my mom and my dad and all the fun times we had. I'm so glad I took a lot of pictures of all our adventures and when we would goof around at home. I'm glad I have every single one of them to cherish forever-because they are all I have. My mom is gone forever and my dad.....he's a whole story in himself. I will talk about that in later blogs. He has a lot of problems and I wish him well in Michigan, I truly do. It's just that we can't live together anymore because he is a user and I can't deal with that anymore. I grew up knowing my dad had a problem with prescription drugs and now that I have a life WITHOUT having to worry about if he is going to throw a fit because the pharmacy won't fill his prescription because it's too soon, I don't want to go back to that old life. Yet I miss certain aspects of it. I'm confused! And just very depressed because I gained a lot of weight, so I can't have my back surgery until I lose that weight, so I can't work until I lose weight to have the surgery so I can work again! I'm just in one big vicious cycle that has my head spinning so fast, I'm dizzy.
Looking at those pictures of happier times with my mom and dad has made me very nostalgic. I wish I felt like I did back then, only back then I took it all for granted. Whoever said that "youth is wasted on the young" was very wise. Oh, how true that is!! I've learned one big lesson from all my reflecting and it's this: don't ever take for granted the things and people in your life. Because one day, when the fun is over and it's time for everyone to go home, if you took it for granted then that time of your life is gone forever. Live for today and take time to stop and smell the roses. But don't smell too much because if you are allergic or have hay fever, then boy will you regret that! LOL! I know, stupid joke. I have a lot of them!!!
Hope you all are happy and well and Happy Memorial day on Monday. Thank you to all who have served our country and lost their lives for our freedom. I don't ever want to take THAT for granted either.
Until next post,
Missy
Thursday, May 27, 2010
My Day As A Lab Rat!
Whew, I'm glad today is over with! I have never been shuffled to and from so many tests in my entire career of having fibromyalgia! Today was the beginning of the resting phase of my cardiac stress test. Very appropriate name, being as I got very "restful" as I was inside this machine with a camera that took pictures of my heart from every conceivable angle. The technician was in another room with another patient and it was quiet and I had a nice, snuggly blanket placed over me (due to it felt like a morgue in there, it was so icy cold!) and I didn't sleep very well last night, so I did the only natural thing...I fell asleep! The tech then rudely (LOL! He was very nice and explained the whole procedure before he did anything) came and woke me up. Let me back up a bit-before I had the resting portion of the test, I had an echocardiogram of my heart, which was a piece of cake. (Mmmm...speaking of cake.....NO, I cannot have cake! I fight with myself often, so don't mind me!) They even had a gown that fit me completely...my butt wasn't sticking out for all to see! Everyone was so sweet and put me at ease, that it actually was a very enjoyable day. If you have to spend it doing tests, it's always nice to have the techs be good to you. I've had plenty of bad experiences (as I'm sure we ALL have) where you could tell the person didn't like their job by the way they interact with their patients. No smiles, no putting one at ease, no humor. Now, I realize that not everything is funny, but you should laugh at those rare times when things ARE funny! It goes along the line of taking time to smell the roses. Anyway, Tony, my technician, took the pictures of my heart after the echo. Tony is fabulous....I've never met anyone as personable as he. He is also quick & efficient. I was the first patient in this morning at 7:15am and he worked on me, then more people trickled in and he had us all prepared for our test within a half hour. His time management skills are outstanding!
I had to laugh because I met the most interesting people this morning as we were waiting in the nuclear med waiting area. This one guy was a "hefty" person like myself and he was in for the same test-chemical stress test. He was telling me that when they scheduled him initially, they said they would have to do him at the Deer Valley location (which is where we were) due to his HEIGHT and....ummmm, weight. We got to laughing so hard. The guy asked the receptionist what is height had to do with anything and she couldn't answer him. I think she just was trying to be delicate about weight issues....but you gotta admit, that is just plain hysterical with how she put it. I've never heard of a test that if you are too short or too tall you couldn't have it done at certain locations. Anyway, it was good to get out of the house for awhile and meet some new people. Because my physical abilities are declining so rapidly, I can't get out a lot anymore. I need that damn walker and I hate having to put my poor husband through having to get it out of the trunk and set it up. But he does it every time with not one complaint. And he helps me up curbs and rough terrain (like stones) and is always by my side. Couldn't ask for a better husband than my Frankie! He is there for me, as I am for him.
After the resting stress test, I had ONE more thing to do: an "ABI" test, which is believe stands for "ankle brachial index." My nursing skills are a bit rusty after two years of non-use, so trying to remember these things are hard. Plus I was never a cardiac nurse anyway. I went into another room with another technician and she had me lay on a hard table while she proceeded to put blood pressure cuffs on both arms and ankles. Then she got readings from all four areas and then used a doppler to check my pulses. I was so embarrassed with how swollen my feet were! My pulses sounded nice and strong. Then, she had me stand up and stand on tippy-toes and then lower down and then back up for 50 times. Well, my legs are the crappiest things on me and I knew I couldn't do fifty. I was right. I could barely do 30 and she said that was OK. My calves go so tight, I though the muscles would split right out of my legs! I had to lay back down and she got the reading yet again from the cuffs. When she blew the cuff up on my calves, it took all I had-and stuff I didn't even KNOW I had-to NOT scream. That hurt soooo bad!!!! I don't know if my fellow "fibromites" have this or not, but my calves get really hard and crampy and I can't walk on them for several minutes, until the cramp leaves. It's just miserable!
I could get my husband out of the waiting room at this point and have him join me in one of the exam rooms for the evaluation of the ABI test. I was surprised they'd do that so quickly. I finally got GOOD news for a change. My arterial flow is very strong and there didn't seem to be a problem she could see with it. She did say that my venous return might be weak, or the valves in the veins aren't working like they should, therefore causing the swelling in both legs. We shall see.
We went home after that and I felt like I'd been through WW3. I was so tired, I got into the house, plopped my purse down on the table, and went to bed for about 4 hours. I don't know why I am so tired all the time! The tests weren't that hard...you'd think my body thought it climbed Mt. Everest, for Heaven's sake! I guess I'm not getting that good REM sleep I need. Maybe tonight I can sleep better. I'm getting very tired right now as I took all my night pills and they are starting to work. I can't take ANYTHING in the morning, including my MS Contin (yikes! I'm going to be hurtin' in the morning!) until after the stress test is over. Tony told me to bring my meds and right after, I can take them. I can't even have water before the test! I'm gonna be a bear in the morning....no pills, no water, no breakfast. And I'll be injected with a medication to make my heart speed real fast. I hate that feeling!!! But, it's my last test and my follow-up with the cardio doc is June 11th. Hopefully all is well and I can have that lap-band procedure and lose enough weight to have back surgery. Oh, I hope so!!!!
Tomorrow afternoon is my husband's appt with the surgeon. We will see if surgery will remove the new tumor or not. I hope they can. It's small and not around major vessels like his original tumor is, so there's a good chance that surgery will do the trick. Question is, should he remain on the Gleevec or switch to the second line medication called "Sutent?" We shall see. Seems like all we ever do is sit around and wait, wait, wait. It gets really old and boring sometimes!!!!!
Okay, I think I'll close for tonight. I'm getting really tired and I hope this blog is still making sense! LOL....I sometimes say crazy things when I'm sleepy. I want to make sure I get enough rest for the "heart pumping" great time I'll have with the second part of the test tomorrow. Wish me luck, and my husband as well. Hope its good news all around.
Be happy & safe, my friends!
Love ya!
Missy
I had to laugh because I met the most interesting people this morning as we were waiting in the nuclear med waiting area. This one guy was a "hefty" person like myself and he was in for the same test-chemical stress test. He was telling me that when they scheduled him initially, they said they would have to do him at the Deer Valley location (which is where we were) due to his HEIGHT and....ummmm, weight. We got to laughing so hard. The guy asked the receptionist what is height had to do with anything and she couldn't answer him. I think she just was trying to be delicate about weight issues....but you gotta admit, that is just plain hysterical with how she put it. I've never heard of a test that if you are too short or too tall you couldn't have it done at certain locations. Anyway, it was good to get out of the house for awhile and meet some new people. Because my physical abilities are declining so rapidly, I can't get out a lot anymore. I need that damn walker and I hate having to put my poor husband through having to get it out of the trunk and set it up. But he does it every time with not one complaint. And he helps me up curbs and rough terrain (like stones) and is always by my side. Couldn't ask for a better husband than my Frankie! He is there for me, as I am for him.
After the resting stress test, I had ONE more thing to do: an "ABI" test, which is believe stands for "ankle brachial index." My nursing skills are a bit rusty after two years of non-use, so trying to remember these things are hard. Plus I was never a cardiac nurse anyway. I went into another room with another technician and she had me lay on a hard table while she proceeded to put blood pressure cuffs on both arms and ankles. Then she got readings from all four areas and then used a doppler to check my pulses. I was so embarrassed with how swollen my feet were! My pulses sounded nice and strong. Then, she had me stand up and stand on tippy-toes and then lower down and then back up for 50 times. Well, my legs are the crappiest things on me and I knew I couldn't do fifty. I was right. I could barely do 30 and she said that was OK. My calves go so tight, I though the muscles would split right out of my legs! I had to lay back down and she got the reading yet again from the cuffs. When she blew the cuff up on my calves, it took all I had-and stuff I didn't even KNOW I had-to NOT scream. That hurt soooo bad!!!! I don't know if my fellow "fibromites" have this or not, but my calves get really hard and crampy and I can't walk on them for several minutes, until the cramp leaves. It's just miserable!
I could get my husband out of the waiting room at this point and have him join me in one of the exam rooms for the evaluation of the ABI test. I was surprised they'd do that so quickly. I finally got GOOD news for a change. My arterial flow is very strong and there didn't seem to be a problem she could see with it. She did say that my venous return might be weak, or the valves in the veins aren't working like they should, therefore causing the swelling in both legs. We shall see.
We went home after that and I felt like I'd been through WW3. I was so tired, I got into the house, plopped my purse down on the table, and went to bed for about 4 hours. I don't know why I am so tired all the time! The tests weren't that hard...you'd think my body thought it climbed Mt. Everest, for Heaven's sake! I guess I'm not getting that good REM sleep I need. Maybe tonight I can sleep better. I'm getting very tired right now as I took all my night pills and they are starting to work. I can't take ANYTHING in the morning, including my MS Contin (yikes! I'm going to be hurtin' in the morning!) until after the stress test is over. Tony told me to bring my meds and right after, I can take them. I can't even have water before the test! I'm gonna be a bear in the morning....no pills, no water, no breakfast. And I'll be injected with a medication to make my heart speed real fast. I hate that feeling!!! But, it's my last test and my follow-up with the cardio doc is June 11th. Hopefully all is well and I can have that lap-band procedure and lose enough weight to have back surgery. Oh, I hope so!!!!
Tomorrow afternoon is my husband's appt with the surgeon. We will see if surgery will remove the new tumor or not. I hope they can. It's small and not around major vessels like his original tumor is, so there's a good chance that surgery will do the trick. Question is, should he remain on the Gleevec or switch to the second line medication called "Sutent?" We shall see. Seems like all we ever do is sit around and wait, wait, wait. It gets really old and boring sometimes!!!!!
Okay, I think I'll close for tonight. I'm getting really tired and I hope this blog is still making sense! LOL....I sometimes say crazy things when I'm sleepy. I want to make sure I get enough rest for the "heart pumping" great time I'll have with the second part of the test tomorrow. Wish me luck, and my husband as well. Hope its good news all around.
Be happy & safe, my friends!
Love ya!
Missy
Tuesday, May 25, 2010
Starting Over Again
Thank you so very much to all of you that read my first post and gave me such good feedback. I really appreciate it! I've added an email subscription link to the side box on the blog for those of you that wish to receive email updates of when I post. You can also "follow" my blog with Google Friends-that link is in the side box, also.
I'm so happy that you didn't think my first entry was boring. :0) I was so afraid that I'd gone on and on with my story and that can get stale after awhile. I promise not to bore you! But let me know if I do! I LOVE writing, I always have. I have a stuttering problem since I was a young child. It tortured me in high school. I didn't have many friends and the friends I did have weren't very close to me. I mostly stayed to myself and wrote poems at lunch out in the school hallway. You know how brutal kids can be, I got my fair share of teasing. I wrote over 200 poems during my high school years. My mother gave me a gift for my birthday of my poems, typed by her, placed in a beautiful binder. Her hands were not good, the arthritis really took a toll on her poor body. She had to quit her job as a 911 dispatcher because she couldn't keep up with the typing that was required of her. So her gift to me is even more precious, because I know the pain she must have gone through to do it for me. I hope I have it still, it probably is in the stuff we had to leave behind in storage in San Antonio. I was in such shock mode after my mom died, I didn't have a clue what I was doing or packing away. I don't even remember packing, to tell you the truth. When we got to my in-laws in Phoenix, I had all my mom's clothes and only one or two shirts of mine. So I'm wearing her clothes, which in a lot of ways is comforting to me. Almost like having her near me again. I hope that doesn't sound too corny. To this day, our stuff is still there as we haven't had the money to get a moving truck and have it shipped back here to Phoenix. We pay over $120 dollars a month to keep it in storage. Every time we try to save, disaster strikes. Our van got repossessed shortly after arriving in Phoenix and we had to file for bankruptcy because the phone kept ringing off the hook of all the bill collectors calling and wanting their money right now. We owed so much, the ONLY option we had at that point was to file for bankruptcy. It sure did stop the phone calls, for that I am grateful. I'd had to live to be 150 years old in order to pay off all we owed. My mom and I were also emotional shoppers, too, in addition to emotional eating.
When we finally do get our stuff back from San Antonio, it's going to be so hard going through mom's things. All her mystery books, cookbooks, Precious Moments collectibles, her M&M canister set I got her for Mother's Day, her purses. God, she loved her purses. And her red reclining rocking chair. I will cherish each and every item.
I don't have to say how much I love my mom. I'm sure it shines through me for all to see at first glance. When she died, it was like my world had been replaced with some alien form that I couldn't and didn't want to accept! She couldn't be gone forever! No! I couldn't get used to the fact that I would never talk with her, laugh with her, hug her again. She was my best friend. People often thought we were sisters....I don't know if that is a good or bad thing! Either she looked young or I looked old! We'll go with the first one. All though these days, as I loom closer to my 40th birthday in June, I look & feel like I'm 100 years old. Life has done a number on me & my husband!!
My fibromyalgia was absolutely HORRIBLE that first year(2008-09) after my mom died. We were adapting well to living with my in-laws. Sure, we had our differences, but we worked them out. The real root of the problem was my dad. I love my dad, I truly do. He's a good man when he wants to be. It's just that he hides that and uses his prescription meds to ease his pain. I keep telling him NO amount of anything will ease the pain of losing Mom. I tried to get him to go to a grief support group and we did go a few times, but he kept falling asleep and snoring that I was too embarrassed to go back! I wish he would have listened to the group leader, as he was an alcoholic after his son was killed in a motorcycle accident. The leader said it was a difficult road for him to get back on the wagon, so to speak, but he did with the Lord's help. He tried to talk to Dad, but he wasn't receptive at that time.
My father continued to abuse his medications and didn't get along very well with my in-laws. I got so frustrated with him! We would be homeless if it weren't for Frankie's parents! He should be grateful our butts weren't out on some street corner! He got in the middle of my marriage by always being in the middle of Frankie and I. Dad would be in my bedroom, watching TV all day and sometimes all night. Frankie and I were never alone, it seemed. We couldn't even go out to eat, we'd have to take him or he'd throw a fit. I'm a peace maker, so hate making waves that I did what I could to prevent a problem. I tried so hard I almost put myself into a coma. My dad was expecting me to take Mom's place and I can't. I felt so miserable, I couldn't eat OR sleep. I lost 100 pounds right off the bat (I was REALLY big; I'm so embarrassed to admit!) and my fibro was playing a number on me. I couldn't get out of bed for that whole year for longer than an hour, it seemed. I felt like hell...headaches, body aches, mouth sores, stiffness in my joints...all my diseases ganged up on me and made one big mess. My mother-in-law was at her wit's end with my dad, the final straw being him going through her purse looking for the car keys so he could go get his drugs. I just knew we'd all get kicked out for sure! I tried to keep everything together, to have it all fall apart around my ankles. I felt like a failure. One big, whopping failure!
Then my dear dad came up with a plan. He wanted to go live with his sister, Shelly, in Michigan for awhile. Michigan is where I originally came from. Most of my dad's relatives are still there.I knew he would be in good hands there, even though Dad's side of the family are wacko's with a capital W!! I could tell you story after story of their antics, but I really don't think there's enough words to adequately describe them. You'd have to see them to believe it, and even then, you wouldn't believe it!
The day my dad took off for Michigan (May 13, 2009) was almost like a rebirth for me. A huge weight was lifted from my shoulders. I was NO longer responsible for my father's actions. He'd have to grow up and take care of himself! If I had to, then he had to! Mom spoiled us rotten by doing everything for us (cooking, cleaning, shopping when she could, driving me to work and back, the list goes on and on), but she's gone and now we have to do things ourselves. We are responsible for ONLY our OWN actions. It's taken me until now to finally really believe that. I felt so guilty and bad for abandoning my father, but he was slowly killing me by putting too much pressure on me. I loved the fact that I can now store my medications in the medicine cabinet instead of a safe that required both a combination and a key. I love the fact that I don't have him following me around and harassing me for my pain pills. No more temper tantrums or throwing things around my in-laws beautiful house. No more tension in the air so thick, a knife could cut it! I feel free!
Unfortunately, my fibro didn't bounce back so quickly. I got a huge blood clot the entire length of my leg July 2009. I was in the hospital for five days for that. Then, my lower back gave way and to this day, I am in extreme pain from 3 bulging discs I have in the lower back. They are compressing against my nerve root exiting both legs. I had a MRI in October of 2009 that showed that and also severe sciatica. I have burning pain that radiates and shoots down both legs. I can't stand for more than 5 minutes and I can sit for short periods of time. I can only lay on my back to sleep, if I roll to either side I get severe pain. I'm on 23 medications a day now, counting my 90mg of MS Contin and 30mg MSIR for breakthrough pain, which I have frequently. I'm supposed to have surgery to correct the bulging discs, but can't have it due to I'm a poor surgical risk because of my weight. Here's the funny thing: the neurosurgeon said I should have the stomach by-pass surgery. Wouldn't I be a poor risk for that, too? I asked him that and he didn't have an answer for it.
So, I went to a pain clinic which advised me to have cortisone shots into my back to see if that would help. I was game at this point. Gone was my apprehension over needles (I know, I know...I'm a nurse and afraid of needles. But understand-I don't have a fear giving a shot to ANYONE ELSE but me!! LOL!), the pain was too bad to not try everything I could. So I went in for the shots in February of 2010 and ever since then, my ankles & legs have been swollen. I don't have a clue why, neither does my doctor know why this is happening. I'm on 40mg of Lasix a day and I still have "elephant legs"!!!! Soooo, now I'm seeing a cardiologist who has recommended heart tests to see if its a circulation problem. So this Thursday I'm going to have a stress test (the chemical one, thank you very much!), cardiac ultrasound and ultrasound of my legs. He also recommended a sleep study, which I have yet to hear when I'm having that. And then, as if we didn't have enough on our plate, my husband has a new growth in his small intestine that his oncologist fears is cancer regrowth. He might be out of remission after 7 years! If it is cancer grown again, we are hoping that the surgeon will just take it out and be done with it. If he has multiple areas of new growths, however, he will have to be started on the second line treatment for his GIST (gastro-intestinal stromal tumor) which involves a medication called Sutent. He sees the surgeon on Friday, right after my stress test! I tell you, Frankie and I have sure had our share of rough waters! But we have stood by each other through thick and thin and I'm so happy I have the honor of knowing and loving him. He's been there for me in my darkest hours after the death of my dear mom and now with all my medical issues. And I will be there for him through his medical issues. That is what marriage is all about-being there for each other and knowing what they need even before they ask for it.
I'll save my story about my on-going fight with Social Security for disability for my next post. My hands are growing weary, as is my eyesight. And I'm exhausted. I'm in another fibro flare with my leg muscles cramping every five minutes. I've got real bad fibro "fog"....I hate that as I can't remember anything when I'm in that state! But I'm sure my fibro buddies know what that is all about!!!
I hope you all are happy and well.
Until next post, bon voyage!!! I'm cruisin' right for my bed......LOL.....
I'm so happy that you didn't think my first entry was boring. :0) I was so afraid that I'd gone on and on with my story and that can get stale after awhile. I promise not to bore you! But let me know if I do! I LOVE writing, I always have. I have a stuttering problem since I was a young child. It tortured me in high school. I didn't have many friends and the friends I did have weren't very close to me. I mostly stayed to myself and wrote poems at lunch out in the school hallway. You know how brutal kids can be, I got my fair share of teasing. I wrote over 200 poems during my high school years. My mother gave me a gift for my birthday of my poems, typed by her, placed in a beautiful binder. Her hands were not good, the arthritis really took a toll on her poor body. She had to quit her job as a 911 dispatcher because she couldn't keep up with the typing that was required of her. So her gift to me is even more precious, because I know the pain she must have gone through to do it for me. I hope I have it still, it probably is in the stuff we had to leave behind in storage in San Antonio. I was in such shock mode after my mom died, I didn't have a clue what I was doing or packing away. I don't even remember packing, to tell you the truth. When we got to my in-laws in Phoenix, I had all my mom's clothes and only one or two shirts of mine. So I'm wearing her clothes, which in a lot of ways is comforting to me. Almost like having her near me again. I hope that doesn't sound too corny. To this day, our stuff is still there as we haven't had the money to get a moving truck and have it shipped back here to Phoenix. We pay over $120 dollars a month to keep it in storage. Every time we try to save, disaster strikes. Our van got repossessed shortly after arriving in Phoenix and we had to file for bankruptcy because the phone kept ringing off the hook of all the bill collectors calling and wanting their money right now. We owed so much, the ONLY option we had at that point was to file for bankruptcy. It sure did stop the phone calls, for that I am grateful. I'd had to live to be 150 years old in order to pay off all we owed. My mom and I were also emotional shoppers, too, in addition to emotional eating.
When we finally do get our stuff back from San Antonio, it's going to be so hard going through mom's things. All her mystery books, cookbooks, Precious Moments collectibles, her M&M canister set I got her for Mother's Day, her purses. God, she loved her purses. And her red reclining rocking chair. I will cherish each and every item.
I don't have to say how much I love my mom. I'm sure it shines through me for all to see at first glance. When she died, it was like my world had been replaced with some alien form that I couldn't and didn't want to accept! She couldn't be gone forever! No! I couldn't get used to the fact that I would never talk with her, laugh with her, hug her again. She was my best friend. People often thought we were sisters....I don't know if that is a good or bad thing! Either she looked young or I looked old! We'll go with the first one. All though these days, as I loom closer to my 40th birthday in June, I look & feel like I'm 100 years old. Life has done a number on me & my husband!!
My fibromyalgia was absolutely HORRIBLE that first year(2008-09) after my mom died. We were adapting well to living with my in-laws. Sure, we had our differences, but we worked them out. The real root of the problem was my dad. I love my dad, I truly do. He's a good man when he wants to be. It's just that he hides that and uses his prescription meds to ease his pain. I keep telling him NO amount of anything will ease the pain of losing Mom. I tried to get him to go to a grief support group and we did go a few times, but he kept falling asleep and snoring that I was too embarrassed to go back! I wish he would have listened to the group leader, as he was an alcoholic after his son was killed in a motorcycle accident. The leader said it was a difficult road for him to get back on the wagon, so to speak, but he did with the Lord's help. He tried to talk to Dad, but he wasn't receptive at that time.
My father continued to abuse his medications and didn't get along very well with my in-laws. I got so frustrated with him! We would be homeless if it weren't for Frankie's parents! He should be grateful our butts weren't out on some street corner! He got in the middle of my marriage by always being in the middle of Frankie and I. Dad would be in my bedroom, watching TV all day and sometimes all night. Frankie and I were never alone, it seemed. We couldn't even go out to eat, we'd have to take him or he'd throw a fit. I'm a peace maker, so hate making waves that I did what I could to prevent a problem. I tried so hard I almost put myself into a coma. My dad was expecting me to take Mom's place and I can't. I felt so miserable, I couldn't eat OR sleep. I lost 100 pounds right off the bat (I was REALLY big; I'm so embarrassed to admit!) and my fibro was playing a number on me. I couldn't get out of bed for that whole year for longer than an hour, it seemed. I felt like hell...headaches, body aches, mouth sores, stiffness in my joints...all my diseases ganged up on me and made one big mess. My mother-in-law was at her wit's end with my dad, the final straw being him going through her purse looking for the car keys so he could go get his drugs. I just knew we'd all get kicked out for sure! I tried to keep everything together, to have it all fall apart around my ankles. I felt like a failure. One big, whopping failure!
Then my dear dad came up with a plan. He wanted to go live with his sister, Shelly, in Michigan for awhile. Michigan is where I originally came from. Most of my dad's relatives are still there.I knew he would be in good hands there, even though Dad's side of the family are wacko's with a capital W!! I could tell you story after story of their antics, but I really don't think there's enough words to adequately describe them. You'd have to see them to believe it, and even then, you wouldn't believe it!
The day my dad took off for Michigan (May 13, 2009) was almost like a rebirth for me. A huge weight was lifted from my shoulders. I was NO longer responsible for my father's actions. He'd have to grow up and take care of himself! If I had to, then he had to! Mom spoiled us rotten by doing everything for us (cooking, cleaning, shopping when she could, driving me to work and back, the list goes on and on), but she's gone and now we have to do things ourselves. We are responsible for ONLY our OWN actions. It's taken me until now to finally really believe that. I felt so guilty and bad for abandoning my father, but he was slowly killing me by putting too much pressure on me. I loved the fact that I can now store my medications in the medicine cabinet instead of a safe that required both a combination and a key. I love the fact that I don't have him following me around and harassing me for my pain pills. No more temper tantrums or throwing things around my in-laws beautiful house. No more tension in the air so thick, a knife could cut it! I feel free!
Unfortunately, my fibro didn't bounce back so quickly. I got a huge blood clot the entire length of my leg July 2009. I was in the hospital for five days for that. Then, my lower back gave way and to this day, I am in extreme pain from 3 bulging discs I have in the lower back. They are compressing against my nerve root exiting both legs. I had a MRI in October of 2009 that showed that and also severe sciatica. I have burning pain that radiates and shoots down both legs. I can't stand for more than 5 minutes and I can sit for short periods of time. I can only lay on my back to sleep, if I roll to either side I get severe pain. I'm on 23 medications a day now, counting my 90mg of MS Contin and 30mg MSIR for breakthrough pain, which I have frequently. I'm supposed to have surgery to correct the bulging discs, but can't have it due to I'm a poor surgical risk because of my weight. Here's the funny thing: the neurosurgeon said I should have the stomach by-pass surgery. Wouldn't I be a poor risk for that, too? I asked him that and he didn't have an answer for it.
So, I went to a pain clinic which advised me to have cortisone shots into my back to see if that would help. I was game at this point. Gone was my apprehension over needles (I know, I know...I'm a nurse and afraid of needles. But understand-I don't have a fear giving a shot to ANYONE ELSE but me!! LOL!), the pain was too bad to not try everything I could. So I went in for the shots in February of 2010 and ever since then, my ankles & legs have been swollen. I don't have a clue why, neither does my doctor know why this is happening. I'm on 40mg of Lasix a day and I still have "elephant legs"!!!! Soooo, now I'm seeing a cardiologist who has recommended heart tests to see if its a circulation problem. So this Thursday I'm going to have a stress test (the chemical one, thank you very much!), cardiac ultrasound and ultrasound of my legs. He also recommended a sleep study, which I have yet to hear when I'm having that. And then, as if we didn't have enough on our plate, my husband has a new growth in his small intestine that his oncologist fears is cancer regrowth. He might be out of remission after 7 years! If it is cancer grown again, we are hoping that the surgeon will just take it out and be done with it. If he has multiple areas of new growths, however, he will have to be started on the second line treatment for his GIST (gastro-intestinal stromal tumor) which involves a medication called Sutent. He sees the surgeon on Friday, right after my stress test! I tell you, Frankie and I have sure had our share of rough waters! But we have stood by each other through thick and thin and I'm so happy I have the honor of knowing and loving him. He's been there for me in my darkest hours after the death of my dear mom and now with all my medical issues. And I will be there for him through his medical issues. That is what marriage is all about-being there for each other and knowing what they need even before they ask for it.
I'll save my story about my on-going fight with Social Security for disability for my next post. My hands are growing weary, as is my eyesight. And I'm exhausted. I'm in another fibro flare with my leg muscles cramping every five minutes. I've got real bad fibro "fog"....I hate that as I can't remember anything when I'm in that state! But I'm sure my fibro buddies know what that is all about!!!
I hope you all are happy and well.
Until next post, bon voyage!!! I'm cruisin' right for my bed......LOL.....
Monday, May 24, 2010
FibromyWHAT?
Hello! I'm very new to this blogging thing, so I'm just going to write in it as if it were a journal or diary. I think the concept of blogging is brilliant. It's an excellent way to share your thoughts and feelings with the world, all in one place! I've wanted to blog for a long time, but I didn't know how to...until I found the blogger on my Google homepage. Extremely easy to set up...so I recommend it to all who want to start blogging themselves but don't know how to go about it.
OK...now that I've done my sales pitch for blogging (LOL!), let me start out my first entry by saying this:
I HATE FIBROMYALGIA!!!There, I feel so much better now getting that off my chest. I've had the blasted illness for 14 years now. I was diagnosed in December of 1996, just one month after my husband and I were married. I kept coming down with what I thought at the time was the flu. You know the symptoms...generalized body aches, extreme fatigue, but then I started having other symptoms NOT associated with the flu, such as sensitivity to hot/cold, intermittent diarrhea/constipation and the aches were no longer generalized, but more local to certain areas such as my shins, lower back, chest, shoulder areas and I kept getting headaches, forgetting things and feeling like I was in a "fog", too. I had such extreme exhaustion that I couldn't work very well as a floor nurse for 12 hours, no less! I had to keep calling in sick. That's when my husband made an appointment with his doctor (I had just moved to the Phoenix area and had no doctor there yet) to have a check-up. After canceling the appointment twice, (I had a thing about going to doctors back then...such as I HATED to go to them!) I finally did go and have the examination. The doctor listened to my story, and then started pressing me in the areas that killed me the most. Then he said, "You have fibromyalgia." FibromyWHAT? Here I was a nurse and even I didn't know what that is. I had never heard of it. Oh, how I wish I could have kept it that way! I did some research, which yielded not too much about this mystery illness. The doctor put me on Elavil and sent me on my merry way.
What I found out in my research was that fibromyalgia is a condition that affects the muscles and sometimes joints. It causes widespread pain (but NO damage is caused to the areas) that alternates its sites around the body. One minute it's in your right leg, then the next it has jumped to the left elbow. Researchers believe it has something to do with an imbalance of chemicals in the brain called norepinephrine and seratonin. They both balance your body by regulating your sleep, for one thing. With fibro, you don't sleep too well (because of the widespread pain!), so your muscles can't regenerate like they should after a long, hard day of use. So you wake up feeling like total crap. And then comes the exhaustion. I'm not talking about being "a little tired." I'm talking about you feel like you've been run over by a truck 3 times and you are so very tired you can't get up. That's the best way I know how to describe it. Sounds fun, huh?
I took the Elavil religiously for the next four years, even though the side effects were one right after the other. Drowsiness, daytime "hang-over", dry mouth, constipation, weight gain (which I definitely didn't need!), to name a very few. I wasn't used to taking medications, except the occasional aspirin, and now I had a pill I took at night and the doctor also prescribed Flexeril for the muscle spasms in my lower back. The pain was always worse there for some reason. Anyway, I was going my merry way (my husband and I at that time moved to Yuma so we could combine expenses with my parents and live together) and then it quit working. I went back to the doctor (my doctor I had when lived in Yuma BEFORE I was married) and he referred me to a rheumatologist, who then stopped the Elavil and put me on Zoloft. I liked the Zoloft a whole lot more than the Elavil, I had so fewer side effects than when I was taking Elavil. For one thing, the daytime "hangover" resolved itself and I could work a lot better on the Zoloft. So I thought I was doing pretty good. I could work again, I was sleeping better and the pains were a lot less. My husband was adapting well to life in Yuma, as he lived in Phoenix with his parents since he was 11 years old. It was a lot easier for us financially, too, sharing expenses and pooling our checks together with my mom's. My dad wasn't working, hadn't worked since I was 13 years old. I'm not exactly sure why. My mom had been trying to get him to work, but he'd look for a job, they would turn him down and he lost his self esteem, I guess. My husband found a great job as a mail clerk for the City of Yuma. Yep, life was good back then!!
My mom and I shared rheumatologists since she was going to one at Scripps Clinic in La Jolla, CA. My mom had lupus and rheumatoid arthritis (RA) for years and I really liked her doctor, Dr. Schulman. She was compassionate and didn't berate us about our weight like other doctors did. My mom and I were "hefty" gals, if you get the picture, and the rheumy in Phoenix told me my sed rate was elevated because of my weight. Yeah, right! I get so tired of doctors telling me the obvious: I'm fat and need to lose weight. I KNOW that, but with the pain and fatigue, who can exercise? I had lost over 100 pounds taking Phentermine a few years back, but then had to stop the drug because of the Phen-Phen scare and I regained all my weight, plus some. I'm a very emotional eater and so was my mom. When we were together, which was a lot, donuts beware! We could eat a whole dozen in one sitting!!! I know you are thinking my profile pic I chose for this blog shows me not looking too bad, but I am too embarrassed to put up one how I look NOW. We had to add prednisone to my medication list due to in 2004, I was diagnosed with rheumatoid arthritis. I was so incredibly stiff, I could barely move. The prednisone, though it was my "miracle" drug and I could move so much easier, didn't come without its own bag of evils. I developed the "moon face", gained weight, increased appetite, leg swelling...to name just a few. My mom had been on prednisone for over 10 years at that time and had all the effects named previously. She always remarked that her head looked like a bowling ball...only thing missing were the finger holes! I know what she means!! My mom had such a great, sarcastic sense of humor. She had such a positive attitude about her illness, this coming from reading in a library book about Lupus saying the life span of those with it is just FIVE years, it boggled my mind to think she could still stay positive. Well, she beat those five years and lived until one day past her 60th birthday. She died July 8, 2008 from what the doctors believe was Lupus induced kidney failure. It came on so suddenly. My mom and I were in San Antonio, Texas for me to start working at Northeast Methodist Hospital and then the guys would come when we found an apartment. Well, we never could get that apartment because my mom fell in the parking lot of a Walmart and dislocated her artificial hip (she had bilateral hip and one knee replacement due to osteoarthritis) and had to have it re-set. She did fine for one more week, then on July 7th, her birthday, she started acting strange. I couldn't keep her awake for more than 5 minutes, she hurt all over and she was having conversations with her father, who had died 15 years ago. I called an ambulance and they took her, to all places, the same hospital I was going to work at. They treated her very well and did everything they could, but her potassium was so high it kept stopping her heart and she was on a respirator. I know she wouldn't have wanted that, so I did the hardest thing I've ever done in my whole life and that was to tell them to stop CPR as she only had 1 percent survival rate. I know my mom well enough that she would come back and haunt me if I let her be a "vegetable" as she called it. So that was that. My grandma (mom's mom) came from College Station, Texas, to be with me and help me wrap up loose ends.
I rode back to Tucson alone, (we had moved there almost one year earlier for another one of my jobs at Tucson Medical Center) and I used that time to reflect over my mom's life, learn from her life lessons and try to figure the HELL out of what happened and how we were going to survive without her. She was the glue that held our families together. Without that glue, we all went our own ways. My dad refused to take suggestions from my husband and me, he wouldn't help us pack up the U-Haul for the move to San Antonio (I thought Mom would have wanted us to continue with our plans) and he kept getting high on his prescription medications. My dad has a LONG standing prescription drug problem and now with my mom gone and not able to whip his butt into shape, he went willy nilly on his prescriptions and even took some of mine and my husband's! My husband is taking Vicodin for his bone/joint pain due to the medication he is taking for his rare GIST tumor in his abdomen. It's inoperable due to its location over vital blood vessels, so this medication (called Gleevec) is saving his life. He is now in remission and has been for the past 7 years.
We "moved" to San Antonio, if you can call it that. We lived at the Super 8 Motel right by the hospital my mom died at. I continued the orientation there, but when I went up to the unit I'd be working on, I had such a panic attack they sent me home (or back to the motel!). Fibromyalgia feeds off of stress, so needless to say, I went into the WORST flare-up of my life. My life was falling apart. My mom died, I can't work due to the flare-up and my dad kept taking my pain pills. He didn't respect my husband as a part of our "team." My dad was KING and that was that. I honestly didn't know how we could continue on like this.
We didn't continue on in San Antonio. We were flat broke, I lost my job at Northeast and my husband and I were up to debt to the very tops of our heads. No credit cards, no gas cards, no nothing. Luckily, my husband's parents were very gracious and not only opened their home to us, but also paid for a lot of our gas and motel rooms while we were traveling to Phoenix! They literally saved our lives, for without them, we would be homeless. So their home became our home until we get back on our feet.
I'll end my first blog entry on that note. I hope you enjoyed reading this and it wasn't too boring. I just wanted to fill you in a little about who I am and what fibromyalgia is. Look for my next blog entry soon. :0)
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FibromyWHAT? by Melissa Schranz is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.