Wednesday, June 30, 2010

CRASHED!

Hello, my dear friends!

Yesterday was such a bomb for me. It all finally came to a head and my poor body just CRASHED!  All the previous week's worries and stress equaled one very tired...no, make that exhausted....girl!  I could barely keep my eyes open that when my mother-in-law came in the afternoon to visit my husband at the hospital, she suggested I go home and just go straight to bed. I guess I kept nodding off in the recliner chair and at one point, I just put my head on his bedside table and nodded off there, too.  I THOUGHT I was getting enough sleep at night, but I would come home, get on the computer and start blogging or researching on the 'net or answering emails and get carried away to the point it would be midnight before going to bed. And then with getting up at 5 am, that only gave me 5 hours of sleep. Funny how the body has a way of letting you know when things are NOT enough!! LOL....

So I came home and filled my pill container for the next day, made some fresh Crystal Light drinks for the next day, had a bowl of cereal for dinner, took my pills and went to bed until 9pm. Then I thought, heck, I'll go on the computer for awhile and catch up.  Well, initially I started out alright, but then my mother-in-law was waking me up at midnight as I had fallen asleep at the computer desk!  So I just now woke up at 6am feeling a lot better!  I'm not so cranky now, so that should make my husband's day!!
Speaking of which, yesterday he looked totally FANTASTIC! I took his picture sitting up in the chair to post on the blog, he said that was OK with him if I do that. So here is my boy.....now keep in mind, he still has the nasogastric tube in as he hasn't passed gas yet. That is ALL we are waiting for. So I guess I have a strange prayer request....for my husband to fart!  Ok, Ok, here is the pic of my brave hubby:

This was taken after his 4 units of blood over the weekend.  Doesn't he look great? I could be a tiny bit prejudiced, but who cares.  I'm just so happy he's sitting up in the chair and out of bed!  He even resumed his walks yesterday.  Today we'll see if he can walk a little farther. It will help to stimulate his colon into working and he can get rid of the nose tube!  Here's another cute picture I took BEFORE his surgery of Jackie and Frankie. They got into this morning routine of snuggling together. I'd wake up to this loud purr and look over and see Jack craddled in Frankie's arm. I couldn't resist a picture. So here is that pic:

Isn't that just precious?  Where do I sign up for Jack's life??????? Thought you might enjoy seeing the two men in my life, as I keep talking about them, it's always nice to have a face to a name.

That pretty much is it so far. Hopefully I have better luck today finding a parking place at the hospital. Yesterday I circled around the lot like a shark about 6 times and couldn't find ONE spot, handicapped or otherwise. Just a few for clergy, and I didn't think I could pull off being a priest or anything, so I resorted to parking on the other side of the hospital near outpatient surgery and hoofing it over to the patient wing of the hospital.  It was quite a walk and by the time I got to my husband's room, I was all red faced and my hair a soggy, sweaty mess.  First thing I told him was, "You have GOT to get OUT of here!!!!"  I may have been a bit crabby.....LOL!

You all have a great day and stay healthy and happy.
Love ya all!
Until next post,
Missy

PS...my new support group is going FANTASTIC!  We are up to 111 members so far and it's only been about 24 hours since I opened it. I have room for everyone, so if you haven't joined yet and want to, just click on the facebook badge underneath Jesus up top of my page and it will take you right to the support group page. Then you can click "join."  That's it!!!

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

Sunday, June 27, 2010

Post-Op Blues

A very tired hello to everyone!

I truly think it is harder on the person who VISITS the patient than the actual patient who gets to lay in those comfy cozy hospital beds....LOL!  Today marks the third full day of Frankie's post-op recovery. He's had his ups and downs. At one point, they had him so on cloud nine, if you know what I mean, that not only could he reach for the stars, but he could actually sit on a star!  He was on a dilaudid pain pump for awhile and they took it away this morning.  He was more alert this afternoon, not so doped up, that he could take a walk around the nurse's station which was the farthest  he's gone to date.  Then we get back to his room and he always fights with the nurse about wanting to go back to bed and they want him up in the chair. So I chip in and side with the nurse (it's for his own good!) and he sits up in this recliner that's near his bed.  I sit in that recliner when he is in bed.  For a chair, it's OK. Not the most comfortable I've ever sat in, but I'm not complaining.  I can have my feet elevated AND visit with my husband whom I miss very much. It's so quiet at nights without him. And I have so much room in the bed....I'm not used to that!  And our kitty baby, Jack lays on Frankie's pillows. I think he misses Frankie, too.  I can't wait until he comes home!  This trekking out into the 110 degree heat and profuse sweating is for the birds. Next time, I'm going to INSIST that Frankie only have his surgeries in the winter!!

Frankie had to have a blood transfusion today because his hemoglobin went down to the 6 range. This makes his 16th blood transfusion in his life. I kid you not. When he was first diagnosed in 2003, he had 14 units then because he was bleeding faster than what they could put it in. Now, I think it dropped because yesterday they were having some problems with bleeding at the bottom of his incision, near his naval. That has always been a problematic site, especially when he had his last surgery in La Jolla, CA.  He was bending over to put on his sneakers and the bottom of the incision split open. We were just packing it with saline gauze and taping a big dressing over it. That is what the nurses are doing right now.  His incision line is even longer now, from just below his breastbone all the way down to his naval.

No matter how much I planned things out, by getting sleep and eating right and doing everything I should be doing to prevent a flare-up, I am so neck deep in one right now it's not even funny!  My muscles in my right leg (unfortunately I have to drive with that leg and it just kills me to keep my foot on the brake pedal at a stop light) are in an almost constant state of spasm. It hurts so bad it feels like the muscle in my calf are turning upside down in my leg, if that makes any sense.  Sometimes it's just my calf, other times it goes into my thigh.  I've upped my magnesium intake, as I've heard that helps with fibro spasms so we shall see if that helps. So far, everything I've done for it just isn't enough. I've massaged it, put my myoflex cream on it, taken my pain meds and it's just being stubborn!!  It really is hard for me to walk with Frankie because that damn muscle keeps going into spasm.  But I paste a smile on my face and off we go around the nurse's station. Frankie and I could do walker races....we look really cute with our walkers, side by side.  Quite the couple, he and I!  And then when we get back to his room, I coach him on his incentive spirometer and to cough and deep breathe.  He always gives me this look that says, "OK, you can leave now" when I turn into "Nurse Ratchett."  But I tell him, "hey, you don't want to live here, do you?" The only way out is by walking and preventing pneumonia or some other hospital based infection.  And we are still waiting for his colon to wake up and start doing its job. His bowel sounds are very slow right now and he still hasn't passed any gas. Figures! He had NO problem with that at home!!!  But now that they have backed off on the narcotics, his colon should come alive. Narcotics can actually make your colon SLOW down and he doesn't need help with that! But you don't want him in so much pain that he can't walk, either. It's such a delicate balance!!!

Today he was pretty good with pain. In fact, he slept so deeply, it was hard to get him awake to do the walks. And then he had some crazy dream of buying a car for $20,000 and only getting a $20.00 rebate! Isn't that nuts? I came home early tonight because when I looked over at him in the hospital bed, sawing some major zzzz's, I thought to myself, "I can sit here in this uncomfortable chair and read my book and watch him sleep, OR I can go home and take a nice shower and eat and get all cozy in my night shirt and stretch out on the bed."  Guess what won out?  I kissed his check and said good night and he was back asleep within seconds.  My poor baby!

I've been feeling a little blue lately. I want to return to work so badly, but I know my body would rebel against me. It's so hard watching the nurses take care of Frankie and doing all that I used to do with such ease. Like changing IV sites or programming the IV pumps and passing out medications. I even miss the charting aspect of the job!!!  I can think of all the times when I was working I took it so for granted and thought I'd love it if I could just shuck it all and become a nomad!!!  Now I'd give my eyeteeth to be a nurse again. I studied so hard for it and for so long, I can't believe that all I got from my career was 14 lousy years!  I HATE all that has happened to me. Yes, I did gain a lot of weight over the years that didn't help my joints or legs, but not all of it was my fault. The fibro and RA have minds of their own. And my back....I could write a hundred years on that and still not have said all I need to say about it!  I wish I had a little magic wand to wave over myself and be healed. I'd heal whoever wanted it!  Well, anyway, I just have been depressed over seeing all these nice nurses doing a job I loved and here I am, not being able to do it because of my legs and I can't stand for more than five minutes!  Will it always be like this? I hope not!  I've renewed my nursing license and will have to take a refresher course if I've not worked as a nurse for five years. So I've got three more years to go and I don't want to take a refresher course.  So when Frankie is all recovered, I'm going to go in for the bariatric assessment and lap-band procedure (if my insurance will cover it!)  and lose so much weight that it will magically take the pressure off the lumbar discs and my nerve roots for each leg and make it so they aren't compressing anything and I can get off some of the medications and go back to work. How's that for a plan?  Hopefully it will work!!!

OK, I'm gonna close and go to bed, so I can get up and start all over again. I feel like I live at that hospital!  Get well soon, Frankie, before they really do start putting me to work there....bad back or not!!

God bless you all!
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

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

Thursday, June 24, 2010

Under The Knife Day!

Well, it's finally arrived. We've stewed, worried, prayed and hoped all in one for this day to come and go.  Frankie took his lovely "cocktail" last night to clean his bowels and he never really reacted much to it.  Man, his colon must have a turtle inside it!  If I had to drink that crap, I would STILL be on the toilet!! He even called the surgeon last night and the surgeon was like, "OK, if it works, great. If not, that's OK. I'll see ya tomorrow!" He was so calm about! Nice kind of surgeon to have, one that doesn't rattle easily! You don't want someone standing over you with a scalpel and have a panic attack. LOL!

We will be leaving shortly for the hospital, but I just wanted to write a quick little note to let everyone know I've made some changes to the blog. I've added three new "pages" to it: "ABOUT ME", "MY MOM" and "MY HUSBAND AND KITTY "SON."  They have their own little tabs at the top, under the picture above. I've written new text and added some pictures to each page. So check it out, please and let me know what you think!!  The blog was getting to be quite long, so the new pages have shorten them up considerably.

Hope everyone has a great day and if I don't come home too late tonight, I'll post a note to let you know how the surgery went. If it's way late, and I'm exhausted from walking the hospital, I'll just go to bed and write a new post with a fresh mind in the morning! Hope that's OK!

Gentle hugs to all,
Until next post,
Missy

Wednesday, June 23, 2010

14 Caps Of Miralax On The Wall....

Ooops, think I got the song wrong.  Should be BEER on the wall, and 99 of them!  My husband would sure enjoy that!  He's not looking forward to drinking 14 caps of Miralax mixed in Gatorade. But he starts that in a half hour from now. He already took the 4 tablets of Dulcolax at noon. We have towels on the floor and plenty of toilet paper in the bathroom because when it hits, it's gonna hit hard and we are NOT taking any chances!!  I feel so bad for him. Bowel surgeries suck. You have to do this atrocious prep, poop your brains out all night, go in for surgery and then wait in the hospital until your bowel sounds return and you pass gas (yes, this is the ONLY time I wish my husband would fart!) and can keep light foods down.  But I will play "Nurse Ratchett" and have my patient up and moving around. He will NOT get an infection, bed sores, or pneumonia!

I'm also taking care of me, too. I'm taking my proper medications, getting enough sleep when I can and I am eating healthy. Except for that YUMMY German chocolate cake, but hey, it's my birthday so it doesn't count. The calories automatically disappear into the ozone layer!!

My husband saw a pamphlet at the hospital yesterday about a program where you can have one person stay with you throughout your hospitalization and even go to tests with you. So I'm going to check out the situation...like, can I have a cot to sleep on, what do I do for meals, ect. It would be great if I could just stay with Frankie and not do the back and forth thing in this drastic heat of 108. That is what is so taxing. And it'll be good for him, too, to have a friendly and familiar face around. :0) Although he may not like my "Nurse Ratchett" mode.....

If they don't have any sleeping arrangements for me, though, then I will have no choice but to come home at night. I don't do sleeping in the chair. I can never get comfortable enough and I wake up in strange positions and so stiff I can barely stand. I remember many a nap I took in my mom's hospital room in the "chair from Hell" when she had her hips & knee replaced. I stayed with her for 16 hours a day and we'd eat pretzels from the barrel (we got soooo sick of pretzels we could have turned into one!) and critiqued everyone that walked by the room. It would be a hoot if they had color clashing clothes or funky hair! Mom would even count how many times the same person walked by the room and you'd be surprised how high that count could get!!  :0) But, I was younger then and didn't have the medical ailments and disabilities I have now.  Now, walking down the hall for over 5 minutes completely taxes me out!!!

Alrighty, guess I'll close and finish up my other computer duties before I turn it over to my hubby to use. After all, this is his last computer day for awhile.....poor guy.  I really DO feel for him.

Hope you all are happy and healthy.
I'll keep you posted on our progress.
Hugs,
Missy

Tuesday, June 22, 2010

A Fantastic Birthday!

All I can say is....WOW! I had such a fantastic early birthday celebration tonight! I have to say, the day started out kind of crappy. I started it off by spilling my diet soda all over the computer desk (luckily the computer was NOT in the way of the spill!) but I did have quite a mess to clean up on the floor and the desk surface. Then, my husband and I wandered out into the blazing AZ sun and heat to his pain doctor appointment, then to the hospital where he will have his surgery for his pre-op physical where they took blood, urine, gave him an EKG and chest x-ray.  We had to do quite a bit of walking and my muscle group in my butt is NOT doing well today. It kept bunching up, which in turn sent spasms down my right leg/calf and then started the tingling in my feet.  Yikes! I am such a mess, I don't know what to do with myself! Even with the walker, it just felt like I weighed a thousand pounds and couldn't move very fast.  From the hospital, we went to the pharmacy so Frankie could get  his pain patches refilled and then we went for his allergy shot. SO, needless to say, by the time we got home, I was HAD!  I laid down on the bed and fell into a deep sleep until my husband woke me up for dinner.

That is when it got great! My sister, Barbara came over (her husband Jay couldn't make it tonight because of work obligations. :( He was definitely missed!) and we had Chinese food and the world's BEST German chocolate cake I've had in my life! I will LIVE off the memory of that cake when I get the lap band procedure done hopefully after Frankie is all recovered from his surgery. He enjoyed the meal, too, because tomorrow he has to start his bowel prep for his surgery on Thursday.  Fun, fun, fun. He has to have 14 capfuls (that is not a misprint!) of Miralax dumped into lemon-lime Gatorade. This is funny because he hates most fruits, but tomorrow he's gonna have to sluggle down 64 ounces of the stuff!  I'll be standing by with the camera....can't let this moment go unmissed!

Anyway, I had a fabulous early birthday celebration with my family and I can't ask for anymore than that. That is the BEST gift in the world, having a caring and loving family around you. I will not take it for granted.  And another BEST birthday gift will be when Frankie's surgeon comes out and tells me he is cancer-free. I can't ask for anything more than that, either.  So I am truly blessed.  I hope you all are truly blessed, too, with a fantastic family.

Well, gotta go put my swollen feet to bed. They are so swollen, I had to up my shoe size. I can't wait to start losing more weight and water from my feet. I think that will really help my back and legs.  Hope you all have a fantastic night and I'll keep ya posted on how my "patient" survives his surgery and recovery. I turn into "Nurse Ratchett" then and be on his butt to deep breath and walk around the nurse's station to prevent pneumonia.

Love ya all!
Until next post,
Missy



HAPPY BIRTHDAY to my late grandpa, Victor Churchill. I miss you, grandpa! We always shared our birthdays together because they were so close. I remember him saying, "Let's change ages by turning the cake around! You can be 55 and I'll be 6!"  He will forever be in our hearts.
June 22, 1921 - July 25, 1993

Monday, June 21, 2010

A Very Good Monday!

Howdy, friends!

I hope you all are having as good as a Monday as I am having!  I woke up this morning with not TOO much pain, that being it wasn't a screamer 10 on a 1-10 scale, mine this morning I'd rate was about a 5.  Ever since I got this absolutely wonderful pillow wedge from http://www.activeforever.com, it makes sleeping on my back a lot more comfortable. And I HATED sleeping on my back in the past. I can no longer sleep on either side or my stomach, my lumbar area and legs have other ideas then- and none of them I like! I wake up in extreme pain that doesn't go away for anything.  This pillow wedge, though, not only takes pressure off my lower back, but elevates my feet, too. So I get two in one benefits from one pillow!  It's great...I highly recommend it to those of you like me that are forced to sleep on your back.  I should collect commission from Active Forever, you think? And to think I learned about them from my physical therapist. I just completed a 4 week stint of therapy that did help and they showed me exercises to strengthen my legs.

And then I check my email, and what do I find? To back track one step, I've blogged about how my TENS unit is a worthless hunk of junk that kept shocking me and I had to pound it on the desk to get it to work AND tape the battery in? Well, my dear sister Barbara & my brother-in-law Jay got me a new one from Active Forever! My hubby and I rushed in the car over to Peoria and picked it up. The salesman there even told me, "Happy Birthday!" Wasn't that nice? :0)  So again, Barb & Jay.....THANK YOU A ZILLION TIMES! I love being part of a family again. Since my mom died, it just felt like a giant black hole inside me. But now with the passage of time and blending in with my husband's family, who have been absolutely great, that black hole is getting smaller and smaller. I will always miss Mom, and I do miss my dad, too, but I must move on with life like she would have wanted me to. So that's what I'm doing!  And my dad is doing great in Michigan from what I can tell. He emails me every few days and is doing good in his apartment. He even got a cat. He's meeting his neighbors. So what more could I ask for? He hasn't sounded bad or anything when he calls me, but you can never tell over the phone how someone really is...you just gotta take a look at them to know for sure things are OK. So I'm going on hope here that things really ARE OK with him.

Thank you to all of my friends that are following my blog by either networkblogs or Google friends. I love checking it every morning and seeing more people follow me. It's almost like Christmas! :0)  I've added a new thing called "Blogfrog" and  I have a community there, too, for fibromyalgia. I posted a discussion in my new community but so far nobody there has responded. Check it out. Just click on "join me in my community." Membership is FREE....my price! I don't know if I will keep it or not, I'll see how it goes. If the activity remains at 0, I'll let it go.

My Facebook page, on the other hand, has blossomed into a wonderful community of friends that can speak freely about fibro and it educates people who don't have it, what it's like TO have it.  I can't say enough how pleased I am with everyone who has stopped by and become a fan of my page and participated in the discussions. Big thanks to all!!  I don't know how to put a "join" button up, though, so just click "like" and keep checking back to see if anything new has happened. :0)  You can get to my Facebook page promoting the blog by clicking on the profile badge at the top of the page.  :0)

Hope all is going well for all of you. We are getting close to Frankie's surgery and he is getting really nervous about it. So please send prayers of peace for him as he faces this on Thursday.  I can't wait until it's over with and neither can he!!!!

Have a good start of the week and I'll post again either tomorrow or Wednesday.
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

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

Wednesday, June 16, 2010

It's Been One Of Those Days...

Howdy, ho, everyone! Before I start in on today's happenings, I just want to say one thing.....WOW! And I'll say some more things.....THANK YOU!  I'm talking about my new Facebook blog fan page I started just yesterday and already, I've got 101 fans. Yippee! I never dreamed it possible that people would actually come and read my utterings and actually enjoy them!! So thank you everyone for your support of my blog and now my blog's fan page. I had NO clue, absolutely none, when I started the fan page how to do it. But Facebook made it relatively painless and all I did was supply the information for the page and they took care of the HTML coding and so forth. Thank God!  Because had that been left up to me, well, let's just say the page would be floating out in cyberspace somewhere, invisible to the human eye!!  And, I just want to say that ANYONE is welcome on that page. Share your stories, photos, links, videos, anything appropriate that you like. It's not JUST for "fibromites" but also for related diseases. And it's a place where caregivers can vent and "fibromites" can meet others like themselves and not feel alone. I remember just being diagnosed with this stupid disease that I couldn't even pronounce, let alone begin to understand, and just feeling like I was the only person that understood what I was going through.  Although we all are different and may suffer in different ways, we can all be alike in sharing how we feel about how we feel.  Does that make sense?  It's been a long, hooooooot day!!

I had my doctor appointment with my primary care doc today and I told her my sad story about the profuse sweating. With summer on top of us and it being 104 today in Phoenix, I thought it appropriate to see if there was anything she could do for me, besides hose me down every five seconds! LOL. I told her I met a person on Facebook that has profuse sweating and she was started on some medication that was supposed to work with that. She said she would let me know how it worked. Haven't heard back yet from her, but it doesn't matter now because when I told my doctor, she said yes, she has heard of the medication (wouldn't tell me the name, darn it...she knows me too well!) and no, I couldn't take it. She explained that with my health history and having the diabetes and hypertension, she WANTS me to sweat. She said I would run into a lot of problems if I DIDN'T sweat. Damn! Wouldn't you know, I have to put up with this sweating on purpose!!
I also told her about what the cardiologist said and he recommended the lap-band procedure and would send medical clearance to her for that. So that is what I have next, is the lap-band procedure. As soon as clearance comes on that from my insurance, I'm set to go. I'm hoping that as I lose a lot of weight, I won't need surgery on my back. Wishful thinking, huh? Well, everyone has to have a dream......what's YOUR dream?

After the appointment we turned in my prescriptions to Walgreens and headed for the library to turn in what was left of the music CD's we checked out and to explain the story why one CD was missing as it's in a zillion shattered pieces inside the computer's CD drive. My dear, sweet brother-in-law and his beautiful wife (yep, that would be my sis!) came over last night and so kindly took out the old drive. When he moved it around, you could hear the shards of CD roll around inside there. The drive was TRASHED!  My brother-in-law tried to get the computer manufacturer to send the new drive now so he would only need to open the computer once...to take the old out and put in the new...but no, that just would be too simple. Plus, they were going to charge him for it until they got the old drive and then credit his account back.  He said no way and I don't blame him. So our computer is CD driveless right now. Poor baby. My sis is going to mail the drive in for us at her work. Isn't she the sweetest? :0) And at least the rest of the computer is workable. Our world would just end if we didn't have a computer!!!  We are both so hooked, it's unbelievable!!

After the library, we picked up my prescriptions and then stopped for some milk. By the time we got home, my feet were screaming at me and swollen, my calves were all tight and I looked like I came from SEVERAL showers and didn't towel off for any of them! I love summer in AZ...why did I move from beautiful Lake Michigan to desert lands and temps that probably rival hell????  It just makes NO sense to me. I'm a water baby and haven't been swimming in so long, I couldn't even tell you where my suit is. Probably in San Antonio with the rest of our crap.  When we finally get our stuff back, we'll need to hire a cleaning crew to get rid of the giant sized dust bunnies that are probably all over our stuff! :0)

So, I sit down at the computer to write this entry, and the 'net is acting funky. The pages half load if they load at all, and my photo slide show underneath the title picture on the first page of this blog doesn't download. I hope it's just a temporary thing. I'll check it tomorrow and if it still doesn't download, then bye-bye slide show!  I think I'll go and put my swollen feet up and read for awhile. At least with a book, you're pretty safe in assuming that you won't have problems downloading the pages or having it crash on you....unless if you fall asleep and it crashes to the floor. Can't tell you how many times I've had that happen!!!

Hope you all are cool, happy & healthy. We still haven't heard about Frankie's surgery yet, but I'm not too worried about it yet. I'd rather him have it when his parents are back from Las Vegas. And so far, it looks like I'll get my wish. Finally!!

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                                                                                                                                                                                                                                                                        

Saturday, June 12, 2010

Fibro Fog Ramblings

Good evening, everyone! WOW! I cannot believe that my lil' ole blog has grown to have 31 followers on Netblogs and 6 on Google Friends. Thank you so much for taking an interest in my "ramblings." I try not to get too boring, but one thing I've learned with having fibro is that when you have foggy moments, you never know what you are doing or saying! I hate that feeling, as I'm sure all of you that have fibro feel the same way.  If there were two things I could take away from having fibro it would be this: the fibro fog phenomenon and the shin tender points. I don't know about anyone else, but those shin tender points are the WORST!!  When I went to the cardiologist, he does his examination and looks down at my swollen feet and then presses in on both shins, at the same time, with both his thumbs. I about hit the roof! That is sooo tender! Ah, I wish someone would find a cure already for this blasted disease! My life was sure much more simple without it...and cheaper, too. Although I can't complain too much as the state takes care of my medical needs.  Speaking of which, it's my favorite time of year...filling out applications to renew my state insurance plan! Oh, joy, oh bliss....but at least I can do it online now. No more hunching over page over page and filling out the same stuff I filled out last year.

Hope everyone is having a good Saturday. Mine started out with my TENS machine going on the blink. I think it has a short in it, probably all the times it keeps falling out of my pocket. Anyway, I have to keep pounding it in order for it to work and stay working.  Looks like I'll have to get another machine when my husband gets paid. Unfortunately, my insurance isn't covering that part of my treatment, and of course, it's the part of treatment that REALLY works!  But I have no choice but to wait until he gets paid at the beginning of next month to think about getting another one. Drat!  Why do I always have drama surrounding me????

My dad called me this morning and he sounded good. He has his own apartment now and he called Social Security all on his own without me having to remind him to change his address.  He's so proud of his own place and his own furniture. And to think he set it up all on his own.  Maybe Mom and I shielded him too much from the world and it set him back decades. We never trusted him enough to do things on his own and my mom, God bless her soul, was NOT a patient woman. She wanted to do things her way all the time, so sometimes Dad got left out in the cold. MAYBE, just maybe, now that he is on his own, and doing things for himself, that will raise his self esteem and his drug addiction will be more controllable. I hope so. I truly do. He deserves to have some happiness, too, after such tragedy of having Mom just die and leave us so soon, without warning.  In some ways, the end of her life marked the beginning of ours.  We ALL are learning new things, things that Mom always did for us, but now we must do for ourselves.  And that part is good. So there is good that can come out of bad situations.

Nothing much going on this weekend. Our computer is still holding up after the CD shatter disaster that happened the other night.  My sister-in-law is trying to contact the manufacturer to see if they can send the new drive first so we can put that in and take the old one out, only having to open the computer ONCE instead of two times. I think it makes perfect sense. And luckily my sis-in-law can be very persuasive. So give 'em Hell, Sis!!

My hubby and I have the whole house to ourselves for awhile as his parents are away on a casino holiday in Laughlin and Vegas. Sounds fun, doesn't it? And they deserve it, too.  My hubby and I are having fun, too, having time to ourselves and "playing house." We are taking care of their two cute dogs, who miss them terribly and haven't eaten yet for us.  My mother-in-law said that they love scrambled eggs, so we may have to whip up a batch so the doggies will eat.  Boy, oh boy....would they like sausage or bacon with that?  What a life!

That's it for now. We haven't heard from the surgeon yet about Frankie's upcoming surgery. But it's early and he hadn't looked at the films yet taken at the PET scan.  Once he has a "surgery plan" mapped out, he'll set it up and let us know. It'll be good to get this chapter behind us and move on to the next!

You all have a great rest of the weekend and thank you again for following us on our life trail blog.  One thing about life...ours in general....is usually it's always got something going on!!

Stay happy & healthy!
Until next post,
Missy

Friday, June 11, 2010

Missy is A-Okay....or as Ok as I'm gonna get!!

Howdy, friends & family!  Yep, you read right...the title of this entry is that Missy is a-okay. I'll let you get over the shock first, maybe sit down and put your feet up and take a sip of a cool drink. It IS very shocking indeed that anything on my body could be ......normal!  The doctor I saw today was very nice indeed, but he sported a very heavy accent of Indian descent. But I did understand him when he said my heart was normal and strong. He also understood me when I said the second part of that stress test was horrible. He even filled in the word for me....HORRIBLE!  But necessary to rule out anything wrong. At least it's over with and he will recommend me for the lap-band procedure. He will write a report to my primary doctor and that should be that. The insurance will squabble of course over who will pay for it, but I definitely will fight that I certainly have medical need for it. It is NOT cosmetic in nature!  So hopefully I'll continue this new & strange upward positive trend and the insurance authorization will go without hitch. Because there is NO way I can have the surgery and pay privately for it!  Unfortunately I'm NOT Bill Gates!

I feel like a weight has been lifted off of me. When the doctor said I my heart was strong and the swelling is probably due to gravity flowing downward and my veins aren't able to pull the fluid and blood back up to my heart, so it pools in my feet and legs.  So my ticker is ticking away, but the veins are taking a vacation!!  So his advice was to elevate my legs as much as possible while sitting and to do ankle pumps to keep things moving in my legs. And try and walk as far and long as I can. THAT is where I run into problems with still!!  I can stand for about five minutes in a row and then have to sit down or my legs will sit me down wherever I am....and it never is by a chair, of course!  So that is how my appointment went. I don't have to go back unless I run into problems.  I am so happy about the fact that ONE part of body still works!!

As for our poor computer, the CD DVD drive is broken when the CD last night shattered inside it.  The warranty will cover the drive and WE have to uninstall it, ship it to their factory and they will then mail us a new drive to install back into the computer. Luckily the rest of the computer works just great and we can use it still. Yippee!!  And I just learned that my brother-in-law will uninstall it this weekend and ship it to the factory for us!! Both my brother & sister - law are the BEST. Being an only child, it sure is an eye-opener of how families help each other out and you can talk to them about things you can't tell anyone else and they help you sort things out. I LOVE belonging to my husband's family. They have been a God send---and NOT because of money or getting us things---but because of WHO they are and their utmost love and concern for us. I love being part of the tight-knit network and love and support that words can't explain what is inside my heart.  All I know is I've wanted a family like this my whole life and now that I have it, I'm not gonna let go!!!  I love my dad, sure, but for obvious reasons I can't return to him.  So my hubby's family is stuck with me!!  Lucky them!!!

That pretty much is all the news here. I'm just elated that my heart is okay. I was worried that I inherited my dad's family side of heart disease. I already have their hypertension, so what's next?  Nah, ain't gonna go down that road!!!

I hope you all have a blessed weekend.
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

Tuesday, June 8, 2010

The Saga Continues...Part 2

Hello again! I am sooooo glad to be inside an air conditioned house than outside in the blazing 107 degree heat!  I just got back with my husband from his dental appointment to have a crown placed on one of his teeth and then to his weekly allergy injection.  It was so warm out, my sweat had sweat!! It's going to be a looooonnnnnggggg summer, I can just tell!!

The story continues....let's see....things weren't always bad while we were living with my parents. The time we all went to the Grand Canyon and Sedona were great. And we went to Pacific Beach in San Diego, CA and had a blast at the San Diego Zoo and Wild Animal Park. I've got many pictures from all the trips and I cherish each and every one of them....for two reasons. One, they represent the good times in our life and second, now that my mom is gone, the pictures of her are even more precious. I can't ever get those times back and I want to very much! So if anyone develops a time machine, can I be one of the first to ride in it??  LOL....

Over the 10 years we all lived together, we tried very hard to both hide and help my dad with his drug addiction.  Very hard things to do, indeed. I tried to hold his medications for him and give them out at spaced intervals. That lasted for about two hours. He kept following me around and coming up with things like, "oh, I wrenched my back while doing my work out. Can I have an extra pill?" It's very hard to play jailor after your own dad. How do you say no? And everywhere I hid his pills, he found. So we came up with a safe that requires BOTH a key and a combination.  I joke and say this safe is "BP"....stands for "Bobby proof."  He tried to take some kind of tool and pry it open when I was at work but it didn't work.  And it got paint flecks all over my carpet that he didn't bother to clean up!

He got really upset over not being able to get into the safe that he started just outright demanding I give him his pills back. I was afraid of what he might do, so I gave them back.  But I kept ours in the safe, though. He can have his and we can have ours!!  Oh, sigh, if only it worked out like that. When he threw a fit, he threw a massive fit. Hitting things, throwing things, I never knew what else he might do and didn't want to find out. So I divided up our pills and gave him a small amount to keep him quiet. But when I did that, our supply ran short and when I'm out of my pain medication, I'm miserable!!!!  Frankie and my mom were miserable!!!!  But I just didn't know what else to do. I felt trapped in every sense of the word.  And we would be out not for just a few days, but sometimes a week or two.

When mom and I were out on my traveling nurse jobs, that was nice. We would be gone for a week or so, as I had an assignment at Banner Desert Hospital in Mesa, AZ. The nurse company got us a really nice apartment in Scottsdale and mom and I would go and live the high life for awhile. It was sooo nice to keep our medications in the medicine cabinet instead of locked up in the safe.

I did the nurse job at Banner Desert the best I could, but working on the floor just got to be too much. Plus, my wieght was ballooning up and I could hardly breathe without having to huff and puff!!  My joints, especially my knees, were all screaming at me. I tried to put up a brave front for my mom, but damn, I hurt so bad I could hardly stand it. But I had to work....I was the main bread winner, so do speak!

The next assignment was the San Antonio one, where mom died. I knew the second we got to San Antonio, and felt the increase of humidity, that I wouldn't be able to work at the hospital that hired me.  It was a shame, as everyone there was so nice, caring and compassionate. When mom fell ill and was critical, I had a team of people around ME, and she had a team around her and we both were being cared for. That was the absolute worst day of my life on that day they told me my mom was going to die. I couldn't imagine my life without her. Who would take care of my dad? Was I responsible?  I was so afraid to call him up and tell him mom had died. What would he do? Would he take an overdose of his pills and end it all? But I couldn't NOT tell him. So I told him and he was just absolutely silent. My husband said he paced a lot that night and didn't sleep.  My grandma came and stayed with me to help me adjust to the drastic changes.  She lives in College Station with my aunt and uncle, so the trip wasn't too far from San Antonio.  Grandma was in shock mode, too, but she kept focused and we took care of all the arrangements to have mom cremated and sent back to Michigan, where we thought she'd be buried in the Churchill family plot.  After all was taken care of, grandma went back to College Station and I started back home to Tucson. I'm glad I took that trip alone. I remember driving and crying, remembering every moment of my life with mom and now driving the highways alone, no laughter or music in the car that mom loved while she drove.  I wished I could go back in time and figure out what happened. Why did her kidneys fail so fast? Was it a whopper of an infection? They all seemed to think so in Texas.  She was always getting infections. After all her joint replacement surgeries she'd get a skin infection that would need a treatment of antibiotics.  But she always got a fever with her infections and she didn't have one this time. Only her white count was very low, but that is one thing you can't tell when looking at  someone.

I tried to believe that I could still keep that job in San Antonio. Mom wanted me to keep working so badly and I tried to do that for her, in her memory. So I went back to Tucson, packed up the moving truck (with MUCH thanks to my in-laws and sister-in-law Barb and brother-in-law Jay as they helped with getting us moving men and money! And my mom and dad-in-law helped pack up the kitchen.  My father didn't lift ONE finger to help us. I don't know why. I kept telling him, "Dad, we are leaving tomorrow. Please help us!" and he would look at me and tell me we had plenty of time.  NO, we didn't!!!! So Frankie and I worked like maniacs and finally everything was loaded and we were ready to go.

Our life in San Antonio flopped even before it started. I tried to work, but had such a severe panic attack that they sent me home on my first night there. It was so much harder than I thought to work in the same hospital my mom had died in.  We were living in the Super 8 motel, I couldn't work a shift to save my life and we were broke. My grandma and frankie's folks financed our stay at the Super 8, but that was running out fast.  My uncle, who lives in Michigan, kept telling us to come and stay with him for awhile. I was so blinded by grief that I followed what Dad wanted. So Michigan we went to and stayed there for about two weeks and then Frankie's folks graciously took us into their home until we get on our feet again.  We were broke (as usual) and would have stayed in Michigan until Frankie's disability check came in at the end of the month, but Frankie's folks came to our rescue again and financed some of the trip home and my aunt and uncle gave us money, too.  They were probably glad to get get us out of their house....especially my dad!!

Well, I'm gonna bring this to a close for today as my eyes are blurry and my brain is foggy. I hope this isn't too boring.  It does me a lot of good to talk about this and remember what happened.  Having mom die is the WORST thing to have happened to me in my life so far.  Even after almost 2 years, I'm still in shock that she is gone.  I will forever love and miss her.

I hope you all are happy & well!
Until next post,
Missy

Monday, June 7, 2010

Puddles....of Sweat!

Howdy! I found myself with a few extra moments and thought, "hey, I could write a little more in my blog!"  How very addicting this blog is....and it's helped me in so many ways, to get things off my chest. If you've got things to share that are on YOUR chest, sign up for a blog and start blogging away...I guarantee you, you won't regret it.  The ONLY thing I ask of you is....please leave me some feedback. It helps me to know what you like, don't like, so forth. Please tell me if I bore you to tears and you are to the point of unsubscribing!  I'd hate for that to happen....but I can't read your mind. So PLEASE TELL ME WHAT YOU THINK! You don't have to like every post, but even just clicking the "like" button I have under each post tells me a lot. So far, the only one clicking it is ME! LOL.....so I'd really appreciate it if you could help me out in that way.  Thanks!!!

I fell asleep again at 7pm tonight and woke up in a puddle of sweat again. I don't know if this is a fibro thing, a medication thing, or a "something else that hasn't been discovered" type of thing! Do any of you that have fibro and take the medication Savella have profuse swelling? I think I have narrowed it down to that medication, because before I was taking it, I was fine. Of course I'd sweat a little...who wouldn't in the blustery 110 degree heat of an AZ summer?  But never in a cool house with a fan blowing on me all the time!  When I go outside it's even worse. Yesterday when my husband and I went out on an errand, I was so sweaty, I could practically slide out of the car.  My hair looked like I just came from the shower.  It's been so oily, lately and that's because of the sweating.  When I go out in public, I attract stares from all around because my shirt is stuck to me and my hair is sopping wet. I hate it!!!  Does anyone have ANY advice for me? When I see the doctor again, I'll run it past her.  She probably will stand there and cry because I've given her ONE more thing she can't explain or solve! I'm just one big question mark, I think!!!

My doctor is wonderful, That is half the battle of fibromyalgia. I'm sure those with it can attest to the fact that a bad doctor can make you feel terrible, they don't believe you, and you never want to go back to another one again.  We ALL have had that.  My advice is: give two, three or even four more docs a chance. NOT ALL of them believe the same, especially in today's world. When I was first diagnosed, I had a hard time finding a good doctor who even believed that fibromyalgia EXISTED, let alone believed in it, until I found the rheumatologist in La Jolla, CA at Scripps Clinic.  But then we moved from Yuma to Tucson and it just got to be too far away to see her. We were in the process of moving from Tucson to San Antonio and to find a new doctor when mom got suddenly ill and died.  That left me with the task of finding my wonderful doctor here in Phoenix.  I wouldn't trade her in for ANYTHING.  She saw me at my absolute worst and has seen me through the traumatic grieving of my mom's death, my flare-ups from Hell, my monster blood clot the whole entire length of my left leg and now the foot swelling and body sweating.  I hope all of you can find an amazing doctor like I have.

Well, think I'll go back to bed and hopefully have a better day tomorrow. And I will continue my saga story of my past....it gets better, I promise!  Hope you all have a good night and please do let me know what you think of my posts. I'd really appreciate it.

Thank you!!
Big hugs,
Missy

The Saga Continues!

Good afternoon, everyone! I hope this post finds you all happy and as pain-free as possible. I woke up with a lot of numbness in my right foot, alternating with "pins and needles."  The numbness was so bad it felt like I was touching someone else's foot.  VERY weird indeed!!  I also had that happen when I sat on the toilet for too long yesterday. I was so tired, I fell asleep right where I was. It was quiet, dark and I must have been reasonably comfortable to have fallen fast asleep. I woke up with that numbness problem and had to bang my feet on the floor to "wake" them up. I was calling for my dear husband, who was in the next room (our computer room) but he couldn't hear me over the computer.  Go figure! Now who's more important? The wife or the computer? Don't answer that!!!  LOL....

Anyway, true to my word, I'll continue my story where I left off last night. I hope it helps others out there that face the same challenges that I have to face.  It's not easy to have a chronic illness for which you take medications for and then your dad takes that medication from you.  I love him, but I'm just so frustrated with him right now for doing that to me all the time and making me feel guilty or a "bad daughter" if I don't do what he asks. He's very good at pressing my "buttons."  And I fall into it every single time!!

Things DID go good for awhile after Frankie and I moved in and shared expenses with my parents. Sure, there was an adjustment period as it's difficult to blend two families into one and I think my mom and dad were jealous of Frankie at first because of the time he spent with me was time away from them. But we made it work because we had to. My mom couldn't live on just her check and we couldn't afford to pay for two households, let alone our own!  We all cracked down and got used to each other's habits. No use wasting energy on fighting about who left the towel on the floor in the bathroom, or the toilet seat up when we were dealing with much more heavier issues.  My dad.

My dad came from a dysfunctional family. If you look up in the dictionary the term dysfunctional, you'll see a family portrait of the Karchunas klan. IF you could get them all in one room together and have them NOT try to kill each other!  They have lots of mental issues that go way back that I can't even begin to describe it.  My dad has four brothers & one sister and each one has some sort of problem. My dad's dad was a blazing alcoholic. When he died of a pulmonary embolus at age 47, they searched his automotive garage and found beer tucked up all over the place. I can't say I blame him in some way....my grandma Karchunas was some kind of woman.  She never worked a day in her life, never learned how to drive and she actually told me once that her main purpose for having children was so they could grow up to wait on her. Nice.  She was a very paranoid person, kept looking at you out of the corner of her eye. When my mom first met her, she started doing that and mom just looked right back at her.  She was a user, to say the least. When mom would come down from college to see dad, grandma K. would get to her first and ask if she could make a quick run to the bank for some money. Then after the bank, the store. The list went on until mom told her flat out she came here to see her son, NOT her. Mom was called a hussy and kicked out of the house. Dad had followed mom out, carrying a container of chocolate milk and grandma K didn't like that and she followed them out to the porch with a broom and was bonking dad on the head with it.  What a family.

The eldest son did the smart thing and when he graduated from college, he got the hell out of Dodge, so to speak! He lives in Florida to this day. My dad is the second oldest, and he got hooked on pills when he hurt the muscle group in his back on a die cast machine at work. Of course he always would say it was mom's fault for having those types of medication at home after her surgery (hysterectomy.)  Well, excuse her for wanting pain relief after a major abdominal surgery!!!  One of my two uncle's is a raging alcoholic...in fact, I'm surprised he's still alive after all these years of boozing and taking pills. My other uncle is very spastic and neurotic. He walks around taking his pulse every two seconds and always talks about how everything is "hassles" and more "hassles." And then my poor aunt....she could have been saved, I think, if she would have been taken out of that unhealthy environment and sent off to boarding school!!  My aunt has two children, both with the same father, aged 13 and 22. It's anyone's guess if they will inherit the Karchunas genes and either be mentally ill or chemically challenged!!

That's my dad's family in a nutshell. A very small nutshell. Like I said, he has a very complex family and no one paragraph could sum them up. Heck, a whole room full of paragraphs couldn't sum them up!!!  So you can see why when we were broke we could never rely on them for help. It would have been nice, since we'd put up with their crap over the years, but I guess we still have to follow the protocol of praising grandma K and making sure her needs came above everyone else's.

Well, my hubby's turn for the computer has come upon me, so I must close and continue again tomorrow. The good, juicy parts are coming up next! It's almost like a mystery novel, isn't it? :0)  Hope you all have a great night and I will continue on tomorrow with the "saga."

Big hugs to everyone one,
Missy

Sunday, June 6, 2010

Sunday, Sunday

Happy Sunday, everyone! I hope you all have had a good weekend. Ready to start the new week, with all it's challenges and unforeseen experiences?  That is what scares me-is the unforeseen experiences- as you can't prepare for them. I'm the type of person that loves to pack ahead of time, so to speak, and prepare for what is going to happen next.  I HATE surprises..most of them, anyway. I mean, birthday or anniversary surprises are one thing....I love those. The surprise of having my mom suddenly die while in San Antonio....that was ONE surprise I could have definitely lived without!!!   Living with fibro is one big question mark over your head. You just don't know when the flare-up is going to come. You can't ever make good plans, for fear you will have to cancel because of a flare-up. I've had to do that so many times over the past 14 years that I'm so hesitant now to even make plans to do anything. Then you sit around the house being bored and you hate having fibro for one MORE reason....you can't ever plan anything!!

I've been in such a nostalgic mood lately. I've been looking at a lot of pictures of my mom and dad and when Frankie and I lived with them. I've also looked at pictures of my childhood and remembering times when they weren't so bad. My dad had a job and wasn't hooked on prescription drugs at that time. We had two cars and presents under the Christmas tree. We had a nice place to live in, one I wasn't so embarrassed of that I'd lie to my friends about where I lived.  Actually, make that FRIEND. I only had one good friend in high school and her situation was kind of like mine.  Her father was an alcoholic and her parents divorced and she lived with her mom not too far from where I lived.  I may have had both of my parents, but there were lots of times I wondered if Mom would have been happier with her life if she and my dad divorced.  Don't get me wrong-I love my dad, despite his addiction, but they just fought ALL THE TIME and that is not good for a relationship. The tension was so much in our house that you could cut it with a knife.  My dad, for some reason, just quit looking for a job, so mom had to work extra hard and long at the job she had just to make ends meet. I volunteered many times to go out and flip burgers at the Burger King down the street, but she wouldn't hear of it.  Especially when I was in nursing school. She kept saying, "I want you to study and work hard in school. Graduate and get a good job and get us out of here!"  So that is what I did. I studied and graduated with honors and my dad would go around surrounding towns with his sister and look for "candy man" doctors who would write prescriptions for tranquilizers and pain killers.  My mom would be working so much we never saw her too much.

I graduated from nursing school May of 1993. At that time, my mom's dad was suffering from late stage Alzheimer's and the plan would be I would go to Arizona and help out grandma as she was having a difficult time with him.  I had to wait for three months, though, for my license (and to see if I even passed the boards!)  My license came the last week of October and I flew out to Arizona. My grandpa died of complications following a stroke he had in July. I decided to still go along with the plan of going to Arizona because the job market was not good for RN's in Michigan at that time. They wanted LPN's, who they could pay less. That's what I was told, anyway.  My grandma met me at the airport and my new life, as I knew it, was just starting. I was very excited, but scared, too. I never had been away from my parents like this. Being an only child, I was close to my parents and rather shy of new people.

My grandma lived in Yuma, AZ, which is a dusty border town to Mexico and California. You could almost be safe in saying that the primary language of Yuma is Spanish, and English second. When I was hired at the community hospital, I took care of lots of patients who only spoke Spanish. I'd have to have someone come and interpret for me or talk with little children who were learning English in school. I remember getting a consent for a colonoscopy through a five year old to his grandmother who was having the test!  After awhile, I picked up words and phrases in Spanish and got better, but I certainly wouldn't call me fluent in Spanish!

My parents came out to Yuma in April of 1994. It was only then that I learned my dad was a nightmare while I was gone the whole time in AZ. He would be taking taxis all over town to urgent care facilities and ER's, in search of his medications of choice. He even took the car out (I saved enough of my checks so they could buy a car to come to AZ with) and he was really "high" and hit two parked cars and scraped the guard rail on the road he was on. He was on the police band radio as a "hit and run."  When he showed up at mom's work, she didn't know what to do. He was obviously three sheets to the wind and in NO condition to drive.  He suffers from seizures, so she called the police and told them that he must have had a seizure while driving. They dropped the charges. She did what she felt she had to do, but I don't think she did him any favors by covering up like that. Maybe if we both would have covered LESS for him, he might have realized how bad his drug problem really was. We'll never know.

I met my dear hubby online in 1995 and we traveled back and forth from Phoenix (where he lived) to Yuma (where I lived.)  We did this for a year then decided to get married Nov. 16th, 1996.  I chose to live in Phoenix after our wedding, to see how life in a big city was. I never lived in a big city, so this was very exciting. I had secured a job at Boswell hospital in Sun City that I really enjoyed. We'd go see my folks in Yuma on the weekends once or twice a month. We kept that up for about 8 months then my dad started calling me on the phone with really weird statements like, "your mom is trying to drown me in the bathtub."  He had many other statements, but that was the weirdest one. Mom got on the phone, crying, saying she was NOT trying to kill him, although it wasn't a bad idea at the moment!  I threw some clothes into a bag and Frankie and I made an emergency trip to Yuma.

Truth be told, we weren't doing so hot in Phoenix, either. I was diagnosed with fibromyalgia in Dec. of 1996 and felt horrible with joint and body aches, irritable bowel syndrome and my calves would get so hard I could barely stand on them. My body was reacting to the stress of worrying about Mom and we were sending them money on a monthly basis, so that was cutting in on OUR monthly bills. We were broke, too!  So we decided to pool our checks together and live together.  Frankie and I moved to Yuma a few weeks later and I got my job back at Yuma's community hospital.  Frankie landed a job at a grocery store as a courtesy clerk, which he hated. He worked there for awhile, then landed a really good job with the City of Yuma as a mail courier.  Life should have been better, right? One would think......

I'll continue my saga tomorrow, my friends. My hands are starting to get stiff and my back and legs are killing me. My feet are so numb, it's hard to move them. God, I love fibro and neuropathy! They make a person feel so good, don't they?  Forgive me for cutting this short.  I hope each and everyone of you are happy and well.  Have a good week and I'll post again tomorrow.

Big hugs,
Missy

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