Sunday, May 30, 2010

Jack n' the Box

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Reflections

Hello! I'll just jump right in by saying that my husband finally got a bit of good news yesterday when we visited the new surgeon in Scottsdale.  I really liked him-he's young, aggressive and knew all about Frankie's case because his oncologist had been calling him all week to fill him in on the specifics. Because these tumors have a tendency to be very quick in growing when they recur, I'm so glad that they are not wasting any time with getting him treated. The game plan is he will have a test next week-on Thursday or Friday-to check his stomach and see what is in there. We are hoping it is just a blob of undigested contrast (ewe!) as opposed to a tumor. If it IS a tumor, then when he is in surgery for his intestine, they will remove the tumor and part of his stomach at that time.  You are probably asking yourself at this point, "where's the good news?" The good news is that Frankie's oncologist doesn't believe the tumor in his intestine has spread to ANYTHING else. Which makes it very easy to take care of with surgical removal and continue the Gleevec.  If it had spread, then he more than likely would have been switched from Gleevec to the other drug, Sutent, which has a list of side effects that would stretch the Great Wall of China!  The surgeon told us that Frankie's surgery would be probably in two weeks.  I will be so glad-and so will Frankie!-to get this over with.

I was looking through some pictures of my family today and I got into a real reflective mood. I'm going to be turning 40 next month and what have I done with my life? Sure, I studied hard in school and graduated with honors from nursing school in 1993 and worked hard at whatever job I had for a solid 14 years. I managed to overcome my speech impediment (I went to a training course for stutterers in Norfolk, VA in 1999 and I have a fluency rate of about 90% now! So if you know of anyone in need of such a course, email me and I will give you the details) AND I worked with the fibromyalgia going in and out of flare-ups. Then the RA diagnosis came in 2004, but we caught that so early, no damage has been done so far. I take Arava for it and I am in remission for the RA.

Despite all that I have overcome, here I sit, unemployed, I can't work because the slipped discs in my back hurt so bad and are sending shooting pains down to my toes of both feet and my feet are so swollen, you can see the line imprint on my skin from my socks!  I take enough morphine to choke a horse and besides that, I take 22 other medications to get me through the day. We are living with my husband's folks (which I am so grateful for all they have done for us-I love them to pieces!) it's just that Frankie and I want to get our stuff from San Antonio and move into our own apartment and get on with life. Every time we think we are on top of things, something happens.  We can't save very much money, because Social Security won't give me what I deserve and we just have my husband's disability check to go on. Take away our monthly expenses and there isn't too much left!  


I don't mean to go on and on. Forgive me. I AM grateful for all that God has given us and I can't say enough how much I appreciate Frankie's family for taking me (and my dad, for awhile until he screwed up and was booted back to Michigan!) on as one of their own. I've never had siblings, so it's so much fun to think of my sister-in-law Barbara as my real sister. She IS my real sister! I feel I can talk to her about anything, as with my mother-in-law. My husband's brother Doug lives in Wisconsin, so we aren't too close with him due to the distance.  I also miss my old life, too.  I miss my mom and my dad and all the fun times we had. I'm so glad I took a lot of pictures of all our adventures and when we would goof around at home. I'm glad I have every single one of them to cherish forever-because they are all I have.  My mom is gone forever and my dad.....he's a whole story in himself. I will talk about that in later blogs.  He has a lot of problems and I wish him well in Michigan, I truly do.  It's just that we can't live together anymore because he is a user and I can't deal with that anymore. I grew up knowing my dad had a problem with prescription drugs and now that I have a life WITHOUT having to worry about if he is going to throw a fit because the pharmacy won't fill his prescription because it's too soon, I don't want to go back to that old life.  Yet I miss certain aspects of it.  I'm confused!  And just very depressed because I gained a lot of weight, so I can't have my back surgery until I lose that weight, so I can't work until I lose weight to have the surgery so I can work again!  I'm just in one big vicious cycle that has my head spinning so fast, I'm dizzy.  


Looking at those pictures of happier times with my mom and dad has made me very nostalgic. I wish I felt like I did back then, only back then I took it all for granted.  Whoever said that "youth is wasted on the young" was very wise. Oh, how true that is!!  I've learned one big lesson from all my reflecting and it's this: don't ever take for granted the things and people in your life. Because one day, when the fun is over and it's time for everyone to go home, if you took it for granted then that time of your life is gone forever.  Live for today and take time to stop and smell the roses. But don't smell too much because if you are allergic or have hay fever, then boy will you regret that! LOL!  I know, stupid joke. I have a lot of them!!!


Hope you all are happy and well and Happy Memorial day on Monday. Thank you to all who have served our country and lost their lives for our freedom. I don't ever want to take THAT for granted either.


Until next post,
Missy





Friday, May 28, 2010

My 2nd Day As A Lab Rat!

Hello, everyone!  Before I begin my blogging, I just want to say a great big THANKS to POLLY on Facebook for helping me with resizing the picture above. I don't know if you noticed it before, but the picture didn't quite fit in the box and the side spilled over the boundary of the box. Now it's just perfect!  So again, thank you Polly.

I have met so many neat people on Facebook. Not only have I reconnected with my high school friend Denise and my aunt, uncle and cousins in Texas, I've met a FANTASTIC group of friends we lovingly call "Fibromites."  People like me, who know what I'm going through day to day. All the pain, stiffness, frustration over people not believing us, and I've gotten some great tips from my new friends on how to cope with this baffling disease. It brings on its very own set of problems that are impossible to deal with alone - but when I feel overwhelmed or having a bad day, I go to my Facebook clan and I feel so much better!!!  And, plus, I have a terrible addiction to Farmville....I can't stop playing it no matter how hard I try!!!  Anyway, I highly recommend the support groups available out there on Facebook. They are the BEST!

OK, today was the 2nd part of my stress test and boy, oh boy.....I don't wanna do THAT again!  I got to the cardiologist office and they hooked me up to all kinds of gizmos-heart monitor, blood pressure and oxygen monitor, EKG and started an IV in my hand for the administration of the chemical test medication.  Within a few seconds, I felt like I was running a marathon and couldn't stop. I felt dizzy, chest pressure, heart pounding, short of breath and my mouth was so incredibly dry my upper lip kept sticking to my front teeth!  I couldn't eat or drink or have my medications this morning, so naturally my right leg from the sciatica was killing me. My blood pressure at first was a little high from not taking my blood pressure pills.  The medication they gave me took care of that, though, and brought it down low. The tech said all the symptoms I was having are normal with adenosine (the medication used in the test) and would last only four minutes.  I cannot believe how LONG four minutes could be!  They instructed me to deep breath, in through my nose and out through my mouth and that will help to get me through the test.  I wanted to tell them to stop so many times, but then I thought of my mom and how strong she was and went through so many painful procedures, I couldn't let her down by wimping out on one little test because of some side effects!  So, Mom, be proud of me....I DID IT!  :0)

After the "stress" part of the test was done, I went to the waiting room and had my Sprite and a banana and I could take my pills.  Thank God!  I waited about an hour and a half and then had to have some more pictures taken of my heart. So back into the tube again for another twenty minutes, while this huge machine rotated over my chest, taking views of my heart from every angle.  When that was finished, I could leave. Yay!!!  Now all that's left is the sleep study, and I haven't heard a word about that. I called earlier this week on it and my insurance had yet to authorize it.  So we shall see.  I have mixed feelings about the sleep study....I've heard they don't let you take your night pills and hook you up to a zillion gadgets. I can't sleep with all that stuff on or people looking at me.  And I can't sleep for sure without my nightly "fibro cocktail" of sleep medicines.  So I won't be too heart-broken if my insurance takes two months to authorize it!!  And if I do take the test and it shows sleep apnea or something, the treatment for that is CPAP and I just don't think I can sleep with a mask over my face. My friends tell me that it's no big deal and if I can finally get a good night's sleep, it will be worth it. They are right, as I haven't had a good night's sleep since my back and leg started getting really bad with the pinched nerves in my lower back.  My husband does say I snore sometimes, but I don't know how he can hear ME when he snores so loudly!  Men!

I won't know the results to any of the tests until my follow-up appointment June 11th.  I hope everything looks normal so I can have that lap band procedure, lose weight and finally have the corrective surgery on my back. Then maybe, just maybe, I can return to work and make lots of money and my husband and I can travel the world.....ooops, think I'm getting carried away there!  If I could just return to work so we could move out of my in-law's house, that would be good.  They have been very kind in sharing their house with us for the past two years but it's time we moved on.  They have a beautiful Winnebago motor home that beckons them to hit the open road!!  And I don't blame them for wanting to travel and have fun. They had long working years and raising three kids and my mother-in-law has had juvenile rheumatoid arthritis since she was 12 years old.  So of course they should have fun!!  And not have to worry about and take care of us. I think my husband and I have come a long way since my mom died.  We are more clear- headed and can take on challenges and responsibilities without too much of a panic!!  When my mom was alive, she took care of everything for us and my dad, so we never really learned the basics....cooking, taking care of a home, managing finances...she "babied" us so much and then when she died, it was like, "what are we gonna do now?"  Well, we are going to live the best way we know how. I have learned that in the almost two years that she has been gone.  My dad is learning it, too, as in Michigan he has a new apartment and is going to learn the hard way about taking care of himself AND the apartment and try not to be evicted the first month he moves in!! 

Well, I better get ready to go with my husband to his surgeon appointment and see what the game plan is with this new growth in his intestine.  I hope and pray it's only that and they can remove it cleanly. We've had enough tragedy to last us a lifetime!!

Stay happy, healthy & safe, everyone!
Until next post,
Missy

Thursday, May 27, 2010

My Day As A Lab Rat!

Whew, I'm glad today is over with! I have never been shuffled to and from so many tests in my entire career of having fibromyalgia!  Today was the beginning of the resting phase of my cardiac stress test. Very appropriate name, being as I got very "restful" as I was inside this machine with a camera that took pictures of my heart from every conceivable angle.  The technician was in another room with another patient and it was quiet and I had a nice, snuggly blanket placed over me (due to it felt like a morgue in there, it was so icy cold!) and I didn't sleep very well last night, so I did the only natural thing...I fell asleep!  The tech then rudely (LOL! He was very nice and explained the whole procedure before he did anything) came and woke me up. Let me back up a bit-before I had the resting portion of the test, I had an echocardiogram of my heart, which was a piece of cake. (Mmmm...speaking of cake.....NO, I cannot have cake! I fight with myself often, so don't mind me!)  They even had a gown that fit me completely...my butt wasn't sticking out for all to see! Everyone was so sweet and put me at ease, that it actually was a very enjoyable day. If you have to spend it doing tests, it's always nice to have the techs be good to you. I've had plenty of bad experiences (as I'm sure we ALL have) where you could tell the person didn't like their job by the way they interact with their patients. No smiles, no putting one at ease, no humor. Now, I realize that not everything is funny, but you should laugh at those rare times when things ARE funny!  It goes along the line of taking time to smell the roses. Anyway, Tony, my technician, took the pictures of my heart after the echo. Tony is fabulous....I've never met anyone as personable as he. He is also quick & efficient. I was the first patient in this morning at 7:15am and he worked on me, then more people trickled in and he had us all prepared for our test within a half hour. His time management skills are outstanding!

I had to laugh because I met the most interesting people this morning as we were waiting in the nuclear med waiting area. This one guy was a "hefty" person like myself and he was in for the same test-chemical stress test. He was telling me that when they scheduled him initially, they said they would have to do him at the Deer Valley location (which is where we were) due to his HEIGHT and....ummmm, weight. We got to laughing so hard. The guy asked the receptionist what is height had to do with anything and she couldn't answer him.  I think she just was trying to be delicate about weight issues....but you gotta admit, that is just plain hysterical with how she put it.  I've never heard of a test that if you are too short or too tall you couldn't have it done at certain locations.  Anyway, it was good to get out of the house for awhile and meet some new people. Because my physical abilities are declining so rapidly, I can't get out a lot anymore. I need that damn walker and I hate having to put my poor husband through having to get it out of the trunk and set it up. But he does it every time with not one complaint. And he helps me up curbs and rough terrain (like stones) and is always by my side. Couldn't ask for a better husband than my Frankie! He is there for me, as I am for him.

After the resting stress test, I had ONE more thing to do: an "ABI" test, which is believe stands for "ankle brachial index."  My nursing skills are a bit rusty after two years of non-use, so trying to remember these things are hard. Plus I was never a cardiac nurse anyway.  I went into another room with another technician and she had me lay on a hard table while she proceeded to put blood pressure cuffs on both arms and ankles. Then she got readings from all four areas and then used a doppler to check my pulses. I was so embarrassed with how swollen my feet were!  My pulses sounded nice and strong. Then, she had me stand up and stand on tippy-toes and then lower down and then back up for 50 times.  Well, my legs are the crappiest things on me and I knew I couldn't do fifty.  I was right. I could barely do 30 and she said that was OK.  My calves go so tight, I though the muscles would split right out of my legs!  I had to lay back down and she got the reading yet again from the cuffs. When she blew the cuff up on my calves, it took all I had-and stuff I didn't even KNOW I had-to NOT scream.  That hurt soooo bad!!!!  I don't know if my fellow "fibromites" have this or not, but my calves get really hard and crampy and I can't walk on them for several minutes, until the cramp leaves.  It's just miserable!

I could get my husband out of the waiting room at this point and have him join me in one of the exam rooms for the evaluation of the ABI test. I was surprised they'd do that so quickly. I finally got GOOD news for a change. My arterial flow is very strong and there didn't seem to be a problem she could see with it. She did say that my venous return might be weak, or the valves in the veins aren't working like they should, therefore causing the swelling in both legs.  We shall see.

We went home after that and I felt like I'd been through WW3. I was so tired, I got into the house, plopped my purse down on the table, and went to bed for about 4 hours. I don't know why I am so tired all the time! The tests weren't that hard...you'd think my body thought it climbed Mt. Everest, for Heaven's sake!  I guess I'm not getting that good REM sleep I need. Maybe tonight I can sleep better. I'm getting very tired right now as I took all my night pills and they are starting to work.  I can't take ANYTHING in the morning, including my MS Contin (yikes! I'm going to be hurtin' in the morning!) until after the stress test is over. Tony told me to bring my meds and right after, I can take them. I can't even have water before the test!  I'm gonna be a bear in the morning....no pills, no water, no breakfast.  And I'll be injected with a medication to make my heart speed real fast. I hate that feeling!!!  But, it's my last test and my follow-up with the cardio doc is June 11th.  Hopefully all is well and I can have that lap-band procedure and lose enough weight to have back surgery.  Oh, I hope so!!!!

Tomorrow afternoon is my husband's appt with the surgeon. We will see if surgery will remove the new tumor or not.  I hope they can. It's small and not around major vessels like his original tumor is, so there's a good chance that surgery will do the trick.  Question is, should he remain on the Gleevec or switch to the second line medication called "Sutent?"  We shall see.  Seems like all we ever do is sit around and wait, wait, wait.  It gets really old and boring sometimes!!!!!

Okay, I think I'll close for tonight. I'm getting really tired and I hope this blog is still making sense! LOL....I sometimes say crazy things when I'm sleepy. I want to make sure I get enough rest for the "heart pumping" great time I'll have with the second part of the test tomorrow.  Wish me luck, and my husband as well.  Hope its good news all around.

Be happy & safe, my friends!
Love ya!
Missy

To Be Or Not To Be....Disabled

I couldn't sleep tonight too well, guess I'm a little more worried about my upcoming heart tests in the morning than I thought! And then there is my husband's consultation with the surgeon on Friday. And just when I thought things were starting to settle down!  Hmph....life always goes and throws a curve ball at you. I'm also very saddened to hear that my dear sister-in-law had to put her & her husband's 12 year old German shepherd dog Katya to sleep yesterday. She couldn't move her back legs at all and had long standing hip problems. She was in so much pain, it comforts me a little to know she no longer is suffering. It still hurts, though. So I've been thinking about them, too. So I figured, hey.....why not put my blog to go use and record some of my inner thoughts about having fibro?  I'm sure those of you that have fibro or know someone who does, have had these same feelings.

I think for me, the worst part about fibro is not knowing when it will strike again. Which body part is up next on its target to make my life a living, painful hell!!  And then, to top it off, if you can't sleep very well for a few nights (and all it takes is a few!) you go into massive flare-up that will guarantee that you will be up many more nights trying to deal with it! Fibromyalgia is soooo screwy! You can't sleep because of the pain, but the pain is why you can't sleep!  I just don't understand this disease at all. You'd think after dealing with its crap for 14 years, I'd be closer to having a handle on this disease.  NOPE. Not even close!

The second worse thing about fibro is knowing that a lot of people don't QUITE believe you are in as much pain as you say you are. Or exhausted as much as you say you are. I've had so many people when I was working say to me, "You are so young! You don't look sick or tired. You should try being MY age...."  I HATE that! What, so I'm young and look normal (except for the Prednisone moon face!) that means I can't have pain or be exhausted from a disease that causes pain and exhaustion?  It was no better when I was diagnosed with arthritis. I got comments then along the lines of...."What, YOU? Arthritis? That's for old people!")  I just can't win. I guess again, because I'm young, my joints are automatically immune to rheumatoid arthritis.  Aye carumba! It just makes me soooo mad the ignorant comments people make. When I was working at my job at the hospital in Yuma, my boss never believed me about having fibro. When I would have massive flare-ups and couldn't even walk, she would still expect me to be ready to go at 7pm for my shift. And if I wasn't, I was always called into her office because of my attendance issues. I told her about the fibro, even left her an article about the effects of it, but I might as well have been talking to a brick wall.  I quit that job after working there 10 years when I no longer could do the rat race of running like a chicken with my head cut off, taking care of 12 acutely ill adults with cancer (on chemotherapy which requires a lot of monitoring) and kidney failure (on peritoneal dialysis which takes even more monitoring) and all the ER admits that would come up all in one lump sum. I could never find enough help because they always thought night shift sat around with our feet high on the desk, eating bon-bons and talking about our weekend plans. So they only had a set amount of nurses on shift and it was never enough.

In 2003, I quit that job and started another at a rehab hospital that just went up in Yuma. I loved that job. A lot less load and stress (which fibro just feeds off of) and I had a manager that believed I had fibro. I struggled with should I tell her I have fibro or not? There's a big debate about that and my thoughts are, better to tell early in the game then to wait and have a massive flare-up and then you are forced to tell your boss why you are not at work. Then they wonder why you kept it secret. I worked the rehab about 3 years, then the wonderful manager I hired in with left and in came the manager from hell. I could go on and on about how she treated me, but I don't want to think about that, much less write about it. You get the drift....she didn't believe me, our work load increased and I couldn't do the job. So I had to leave that job and go to one of the local nursing homes in town for another job. A couple of my rehab nursing friends were at this nursing home, trying to get it back to snuff after being fined big time after failing some of its health checks by the state.

I only lasted 6 months at the nursing home. My friends turned on me and the patient load there was atrocious.....I had over 100 residents to watch over! And all the paperwork. NO health insurance or benefits. My friends (and I use that term lightly) promised all these great things and NONE of them came to pass. Not one.

So, I was back to looking at hospitals for employment. I landed a travel nurse job and had a few assignments, but it was exhausting to keep moving after every contract ended (which was about 3 months each contract), so I didn't last long at that. Then came San Antonio and my job there....I spoke about that in early entries of the blog, so I won't go into detail here, just to say that here I was, emotional eater that gained tons of weight, lugging my body on joints that just screamed out in pain, I knew I wouldn't be keeping this job long, either.  It's just to physical and youth or no youth, I just couldn't keep up anymore.

So, my mom dies and we come to Phoenix and I applied for disability for the first time August 2008.  I filled out the 900 forms the government required, gave the list of doctors I had seen and sat back and waited....and waited...and waited for over 6 months. The letter finally came. DENIED. They said that due to my age and employment skills, I should be able to find a job that will conform to my disabilities. They also said I could stand for three hours, which was sufficient enough to work as a hospital nurse. All I gotta say is....what planet did they just zone in from? I couldn't stand 3 MINUTES, let alone hours. I have horrible pains that shoot from my back to both legs and doing even a walk down the block is sheer agony for me. With carrying so much weight on me, it just was a nightmare on my joints. Plus, all the disability board had to go on was ONE lab report and my Yuma doctors notes.  My rheumatologist in CA never sent the records to the board for review.  So, I took all the info I had, got my records myself and looked through the phone book for a lawyer. THAT was not an easy thing to do...you know how many disability lawyers there are out now? TONS! How do you chose?  I saw a picture of a nice looking lady who specializes in pain and suffering cases, and I definitely had THAT, so I thought she was my gal. I called her up, she sent me the forms (another packet with a ream of paper in it!) and we set up a phone interview. This was around the time of the swine flu scare, so she wasn't seeing anyone in her office. She told me she does her work over the phone.  She wasn't kidding....to this day, I have never SEEN her, only heard her voice over a phone. I don't know why she won't see people in her office now and I find it strange that she can represent someone she's never even seen.  Anyway, I put all that aside, and she helped me file for an appeal. And then we waited again.....and waited....and waited.  The appeal came back....DENIED.  I was devastated. How can this be? I paid into that crappy fund all my working years and now when I really need money, I can't get it? Yet, I see all kinds of people on disability for things I think they shouldn't be...like for minor depression or get this....difficulty sleeping! I kid you not.  Unbelievable!

So, my lawyer filed for request for a hearing and that is where I'm at now with the process. She said it could take up to a year to get a hearing date. I haven't heard a word from her OR social security in months now. My lawyer wants to have my case heard by claiming I have severe depression and unable to function because of the loss of my mother. Plus, I'm on all kinds of medications (esp. the anti-depressants used to treat fibro) so I must be horribly depressed. I tried to tell the lawyer I didn't like this approach, being that I'm NOT severely depressed, I CAN function without my mom (I miss her terribly, sure, but it doesn't interfere with my daily activities!) and I'm taking the Savella, Paxil & Trazadone for the fibromyalgia, NOT depression.  I told her I thought we'd have a better chance with hearing my case on the basis of the bulging discs in my back, morbid obesity (I hate that word!) radiculopathy, which is another name for sciatica. I even had proof....the MRI I had in October of 2009....but she wouldn't hear anything of it.  So, now with the new developments with my heart and having these tests, I'm going to see what the results are and call the lawyer back and let her know I'm seeing a cardiologist now, on top of everything else. The cardiologist suggested that if the tests are OK, and he said that my weight could be the cause of the screwy EKG results, that I go for the lap band procedure to help me lose weight faster since I can't exercise. I use a walker and can't even go around the block now, my back and legs hurt so bad from the bulging discs and neuropathy. If I could have the surgery to correct my back, I think I can go back to work since the Savella has done wonders for my fibromyalgia. I think it actually is in semi-remission and rears its ugly head every now and then with a bad flare.  Especially if I'm worried about something and can't sleep....like tonight. I'll probably pay for this dearly in the morning!!

If anyone has had that lap-band procedure, I'd LOVE to hear about it. Please leave a comment or email me with your experiences.

Alrighty, I think I can try and go back to bed now. Thank you for listening and I'll keep you posted about how things go with my test and my husband's surgery appointment. Please keep us in your prayers. We need it! And I will pray for you, too.

Until the next post,
Have a great day!

Missy

Tuesday, May 25, 2010

Starting Over Again

Thank you so very much to all of you that read my first post and gave me such good feedback. I really appreciate it! I've added an email subscription link to the side box on the blog for those of you that wish to receive email updates of when I post. You can also "follow" my blog with Google Friends-that link is in the side box, also. 

I'm so happy that you didn't think my first entry was boring. :0) I was so afraid that I'd gone on and on with my story and that can get stale after awhile. I promise not to bore you! But let me know if I do!  I LOVE writing, I always have. I have a stuttering problem since I was a young child. It tortured me in high school. I didn't have many friends and the friends I did have weren't very close to me. I mostly stayed to myself and wrote poems at lunch out in the school hallway.  You know how brutal kids can be, I got my fair share of teasing. I wrote over 200 poems during my high school years. My mother gave me a gift for my birthday of my poems, typed by her, placed in a beautiful binder. Her hands were not good, the arthritis really took a toll on her poor body. She had to quit her job as a 911 dispatcher because she couldn't keep up with the typing that was required of her. So her gift to me is even more precious, because I know the pain she must have gone through to do it for me.  I hope I have it still, it probably is in the stuff we had to leave behind in storage in San Antonio. I was in such shock mode after my mom died, I didn't have a clue what I was doing or packing away. I don't even remember packing, to tell you the truth.  When we got to my in-laws in Phoenix, I had all my mom's clothes and only one or two shirts of mine. So I'm wearing her clothes, which in a lot of ways is comforting to me. Almost like having her near me again. I hope that doesn't sound too corny.  To this day, our stuff is still there as we haven't had the money to get a moving truck and have it shipped back here to Phoenix. We pay over $120 dollars a month to keep it in storage. Every time we try to save, disaster strikes. Our van got repossessed shortly after arriving in Phoenix and we had to file for bankruptcy because the phone kept ringing off the hook of all the bill collectors calling and wanting their money right now. We owed so much, the ONLY option we had at that point was to file for bankruptcy. It sure did stop the phone calls, for that I am grateful. I'd had to live to be 150 years old in order to pay off all we owed. My mom and I were also emotional shoppers, too, in addition to emotional eating.

When we finally do get our stuff back from San Antonio, it's going to be so hard going through mom's things. All her mystery books, cookbooks, Precious Moments collectibles, her M&M canister set I got her for Mother's Day, her purses. God, she loved her purses. And her red reclining rocking chair.  I will cherish each and every item.

I don't have to say how much I love my mom. I'm sure it shines through me for all to see at first glance. When she died, it was like my world had been replaced with some alien form that I couldn't and didn't want to accept! She couldn't be gone forever! No! I couldn't get used to the fact that I would never talk with her, laugh with her, hug her again. She was my best friend. People often thought we were sisters....I don't know if that is a good or bad thing! Either she looked young or I looked old! We'll go with the first one.  All though these days, as I loom closer to my 40th birthday in June, I look & feel like I'm 100 years old.  Life has done a number on me & my husband!!

My fibromyalgia was absolutely HORRIBLE that first year(2008-09) after my mom died. We were adapting well to living with my in-laws. Sure, we had our differences, but we worked them out. The real root of the problem was my dad. I love my dad, I truly do. He's a good man when he wants to be. It's just that he hides that and uses his prescription meds to ease his pain. I keep telling him NO amount of anything will ease the pain of losing Mom.  I tried to get him to go to a grief support group and we did go a few times, but he kept falling asleep and snoring that I was too embarrassed to go back!  I wish he would have listened to the group leader, as he was an alcoholic after his son was killed in a motorcycle accident. The leader said it was a difficult road for him to get back on the wagon, so to speak, but he did with the Lord's help. He tried to talk to Dad, but he wasn't receptive at that time.

My father continued to abuse his medications and didn't get along very well with my in-laws. I got so frustrated with him! We would be homeless if it weren't for Frankie's parents! He should be grateful our butts weren't out on some street corner!  He got in the middle of my marriage by always being in the middle of Frankie and I. Dad would be in my bedroom, watching TV all day and sometimes all night. Frankie and I were never alone, it seemed. We couldn't even go out to eat, we'd have to take him or he'd throw a fit. I'm a peace maker, so hate making waves that I did what I could to prevent a problem. I tried so hard I almost put myself into a coma. My dad was expecting me to take Mom's place and I can't. I felt so miserable, I couldn't eat OR sleep. I lost 100 pounds right off the bat (I was REALLY big; I'm so embarrassed to admit!) and my fibro was playing a number on me. I couldn't get out of bed for that whole year for longer than an hour, it seemed. I felt like hell...headaches, body aches, mouth sores, stiffness in my joints...all my diseases ganged up on me and made one big mess.  My mother-in-law was at her wit's end with my dad, the final straw being him going through her purse looking for the car keys so he could go get his drugs. I just knew we'd all get kicked out for sure!  I tried to keep everything together, to have it all fall apart around my ankles. I felt like a failure. One big, whopping failure!

Then my dear dad came up with a plan. He wanted to go live with his sister, Shelly, in Michigan for awhile. Michigan is where I originally came from. Most of my dad's relatives are still there.I knew he would be in good hands there, even though Dad's side of the family are wacko's with a capital W!! I could tell you story after story of their antics, but I really don't think there's enough words to adequately describe them. You'd have to see them to believe it, and even then, you wouldn't believe it!

The day my dad took off for Michigan (May 13, 2009) was almost like a rebirth for me. A huge weight was lifted from my shoulders. I was NO longer responsible for my father's actions. He'd have to grow up and take care of himself!  If I had to, then he had to! Mom spoiled us rotten by doing everything for us (cooking, cleaning, shopping when she could, driving me to work and back, the list goes on and on), but she's gone and now we have to do things ourselves. We are responsible for ONLY our OWN actions. It's taken me until now to finally really believe that. I felt so guilty and bad for abandoning my father, but he was slowly killing me by putting too much pressure on me.  I loved the fact that I can now store my medications in the medicine cabinet instead of a safe that required both a combination and a key.  I love the fact that I don't have him following me around and harassing me for my pain pills. No more temper tantrums or throwing things around my in-laws beautiful house. No more tension in the air so thick, a knife could cut it!  I feel free!

Unfortunately, my fibro didn't bounce back so quickly. I got a huge blood clot the entire length of my leg July 2009. I was in the hospital for five days for that. Then, my lower back gave way and to this day, I am in extreme pain from 3 bulging discs I have in the lower back. They are compressing against my nerve root exiting both legs. I had a MRI in October of 2009 that showed that and also severe sciatica. I have burning pain that radiates and shoots down both legs. I can't stand for more than 5 minutes and I can sit for short periods of time. I can only lay on my back to sleep, if I roll to either side I get severe pain. I'm on 23 medications a day now, counting my 90mg of MS Contin and 30mg MSIR for breakthrough pain, which I have frequently. I'm supposed to have surgery to correct the bulging discs, but can't have it due to I'm a poor surgical risk because of my weight. Here's the funny thing: the neurosurgeon said I should have the stomach by-pass surgery. Wouldn't I be a poor risk for that, too? I asked him that and he didn't have an answer for it.

So, I went to a pain clinic which advised me to have cortisone shots into my back to see if that would help. I was game at this point. Gone was my apprehension over needles (I know, I know...I'm a nurse and afraid of needles. But understand-I don't have a fear giving a shot to ANYONE ELSE but me!! LOL!), the pain was too bad to not try everything I could. So I went in for the shots in February of 2010 and ever since then, my ankles & legs have been swollen. I don't have a clue why, neither does my doctor know why this is happening.  I'm on 40mg of Lasix a day and I still have "elephant legs"!!!!  Soooo, now I'm seeing a cardiologist who has recommended heart tests to see if its a circulation problem. So this Thursday I'm going to have a stress test (the chemical one, thank you very much!), cardiac ultrasound and ultrasound of my legs. He also recommended a sleep study, which I have yet to hear when I'm having that.  And then, as if we didn't have enough on our plate, my husband has a new growth in his small intestine that his oncologist fears is cancer regrowth. He might be out of remission after 7 years! If it is cancer grown again, we are hoping that the surgeon will just take it out and be done with it. If he has multiple areas of new growths, however, he will have to be started on the second line treatment for his GIST (gastro-intestinal stromal tumor) which involves a medication called Sutent. He sees the surgeon on Friday, right after my stress test! I tell you, Frankie and I have sure had our share of rough waters! But we have stood by each other through thick and thin and I'm so happy I have the honor of knowing and loving him. He's been there for me in my darkest hours after the death of my dear mom and now with all my medical issues. And I will be there for him through his medical issues. That is what marriage is all about-being there for each other and knowing what they need even before they ask for it.

I'll save my story about my on-going fight with Social Security for disability for my next post. My hands are growing weary, as is my eyesight. And I'm exhausted. I'm in another fibro flare with my leg muscles cramping every five minutes. I've got real bad fibro "fog"....I hate that as I can't remember anything when I'm in that state! But I'm sure my fibro buddies know what that is all about!!!

I hope you all are happy and well.
Until next post, bon voyage!!! I'm cruisin' right for my bed......LOL.....

Monday, May 24, 2010

FibromyWHAT?

Hello! I'm very new to this blogging thing, so I'm just going to write in it as if it were a journal or diary. I think the concept of blogging is brilliant. It's an excellent way to share your thoughts and feelings with the world, all in one place! I've wanted to blog for a long time, but I didn't know how to...until I found the blogger on my Google homepage. Extremely easy to set up...so I recommend it to all who want to start blogging themselves but don't know how to go about it.
OK...now that I've done my sales pitch for blogging (LOL!), let me start out my first entry by saying this:
I HATE FIBROMYALGIA!!!
There, I feel so much better now getting that off my chest.  I've had the blasted illness for 14 years now. I was diagnosed in December of 1996, just one month after my husband and I were married.  I kept coming down with what I thought at the time was the flu. You know the symptoms...generalized body aches, extreme fatigue, but then I started having other symptoms NOT associated with the flu, such as sensitivity to hot/cold, intermittent diarrhea/constipation and the aches were no longer generalized, but more local to certain areas such as my shins, lower back, chest, shoulder areas and I kept getting headaches, forgetting things and feeling like I was in a "fog", too.  I had such extreme exhaustion that I couldn't work very well as a floor nurse for 12 hours, no less!  I had to keep calling in sick.  That's when my husband made an appointment with his doctor (I had just moved to the Phoenix area and had no doctor there yet) to have a check-up. After canceling the appointment twice, (I had a thing about going to doctors back then...such as I HATED to go to them!) I finally did go and have the examination.  The doctor listened to my story, and then started pressing me in the areas that killed me the most. Then he said, "You have fibromyalgia."  FibromyWHAT? Here I was a nurse and even I didn't know what that is. I had never heard of it.  Oh, how I wish I could have kept it that way!  I did some research, which yielded not too much about this mystery illness. The doctor put me on Elavil and sent me on my merry way.

What I found out in my research was that fibromyalgia is a condition that affects the muscles and sometimes joints. It causes widespread pain (but NO damage is caused to the areas) that alternates its sites around the body. One minute it's in your right leg, then the next it has jumped to the left elbow. Researchers believe it has something to do with an imbalance of chemicals in the brain called norepinephrine and seratonin. They both balance your body by regulating your sleep, for one thing. With fibro, you don't sleep too well (because of the widespread pain!), so your muscles can't regenerate like they should after a long, hard day of use. So you wake up feeling like total crap. And then comes the exhaustion. I'm not talking about being "a little tired." I'm talking about you feel like you've been run over by a truck 3 times and you are so very tired you can't get up. That's the best way I know how to describe it.  Sounds fun, huh?

I took the Elavil religiously for the next four years, even though the side effects were one right after the other. Drowsiness, daytime "hang-over", dry mouth, constipation, weight gain (which I definitely didn't need!), to name a very few.  I wasn't used to taking medications, except the occasional aspirin, and now I had a pill I took at night and the doctor also prescribed Flexeril for the muscle spasms in my lower back. The pain was always worse there for some reason.  Anyway, I was going my merry way (my husband and I at that time moved to Yuma so we could combine expenses with my parents and live together) and then it quit working. I went back to the doctor (my doctor I had when lived in Yuma BEFORE I was married) and he referred me to a rheumatologist, who then stopped the Elavil and put me on Zoloft.  I liked the Zoloft a whole lot more than the Elavil, I had so fewer side effects than when I was taking Elavil. For one thing, the daytime "hangover" resolved itself and I could work a lot better on the Zoloft.  So I thought I was doing pretty good. I could work again, I was sleeping better and the pains were a lot less.  My husband was adapting well to life in Yuma, as he lived in Phoenix with his parents since he was 11 years old.  It was a lot easier for us financially, too, sharing expenses and pooling our checks together with my mom's. My dad wasn't working, hadn't worked since I was 13 years old. I'm not exactly sure why. My mom had been trying to get him to work, but he'd look for a job, they would turn him down and he lost his self esteem, I guess.  My husband found a great job as a mail clerk for the City of Yuma. Yep, life was good back then!!

My mom and I shared rheumatologists since she was going to one at Scripps Clinic in La Jolla, CA. My mom had lupus and rheumatoid arthritis (RA) for years and I really liked her doctor, Dr. Schulman. She was compassionate and didn't berate us about our weight like other doctors did. My mom and I were "hefty" gals, if you get the picture, and the rheumy in Phoenix told me my sed rate was elevated because of my weight. Yeah, right! I get so tired of doctors telling me the obvious: I'm fat and need to lose weight. I KNOW that, but with the pain and fatigue, who can exercise?  I had lost over 100 pounds taking Phentermine a few years back, but then had to stop the drug because of the Phen-Phen scare and I regained all my weight, plus some.  I'm a very emotional eater and so was my mom. When we were together, which was a lot, donuts beware! We could eat a whole dozen in one sitting!!!  I know you are thinking my profile pic I chose for this blog shows me not looking too bad, but I am too embarrassed to put up one how I look NOW.  We had to add prednisone to my medication list due to in 2004, I was diagnosed with rheumatoid arthritis. I was so incredibly stiff, I could barely move. The prednisone, though it was my "miracle" drug and I could move so much easier, didn't come without its own bag of evils.  I developed the "moon face", gained weight, increased appetite, leg swelling...to name just a few. My mom had been on prednisone for over 10 years at that time and had all the effects named previously. She always remarked that her head looked like a bowling ball...only thing missing were the finger holes! I know what she means!!  My mom had such a great, sarcastic sense of humor.  She had such a positive attitude about her illness, this coming from reading in a library book about Lupus saying the life span of those with it is just FIVE years, it boggled my mind to think she could still stay positive.  Well, she beat those five years and lived until one day past her 60th birthday. She died July 8, 2008 from what the doctors believe was Lupus induced kidney failure.  It came on so suddenly. My mom and I were in San Antonio, Texas for me to start working at Northeast Methodist Hospital and then the guys would come when we found an apartment.  Well, we never could get that apartment because my mom fell in the parking lot of a Walmart and dislocated her artificial hip (she had bilateral hip and one knee replacement due to osteoarthritis) and had to have it re-set. She did fine for one more week, then on July 7th, her birthday, she started acting strange. I couldn't keep her awake for more than 5 minutes, she hurt all over and she was having conversations with her father, who had died 15 years ago.  I called an ambulance and they took her, to all places, the same hospital I was going to work at.  They treated her very well and did everything they could, but her potassium was so high it kept stopping her heart and she was on a respirator.  I know she wouldn't have wanted that, so I did the hardest thing I've ever done in my whole life and that was to tell them to stop CPR as she only had 1 percent survival rate. I know my mom well enough that she would come back and haunt me if I let her be a "vegetable" as she called it.  So that was that. My grandma (mom's mom) came from College Station, Texas, to be with me and help me wrap up loose ends.

I rode back to Tucson alone, (we had moved there almost one year earlier for another one of my jobs at Tucson Medical Center) and I used that time to reflect over my mom's life, learn from her life lessons and try to figure the HELL out of what happened and how we were going to survive without her. She was the glue that held our families together.  Without that glue, we all went our own ways. My dad refused to take suggestions from my husband and me, he wouldn't help us pack up the U-Haul for the move to San Antonio (I thought Mom would have wanted us to continue with our plans) and he kept getting high on his prescription medications. My dad has a LONG standing prescription drug problem and now with my mom gone and not able to whip his butt into shape, he went willy nilly on his prescriptions and even took some of mine and my husband's!  My husband is taking Vicodin for his bone/joint pain due to the medication he is taking for his rare GIST tumor in his abdomen. It's inoperable due to its location over vital blood vessels, so this medication (called Gleevec) is saving his life. He is now in remission and has been for the past 7 years.

We "moved" to San Antonio, if you can call it that. We lived at the Super 8 Motel right by the hospital my mom died at.  I continued the orientation there, but when I went up to the unit I'd be working on, I had such a panic attack they sent me home (or back to the motel!).  Fibromyalgia feeds off of stress, so needless to say, I went into the WORST flare-up of my life. My life was falling apart. My mom died, I can't work due to the flare-up and my dad kept taking my pain pills. He didn't respect my husband as a part of our "team." My dad was KING and that was that. I honestly didn't know how we could continue on like this.

We didn't continue on in San Antonio. We were flat broke, I lost my job at Northeast and my husband and I were up to debt to the very tops of our heads. No credit cards, no gas cards, no nothing. Luckily, my husband's parents were very gracious and not only opened their home to us, but also paid for a lot of our gas and motel rooms while we were traveling to Phoenix!  They literally saved our lives, for without them, we would be homeless.  So their home became our home until we get back on our feet.

I'll end my first blog entry on that note. I hope you enjoyed reading this and it wasn't too boring. I just wanted to fill you in a little about who I am and what fibromyalgia is.  Look for my next blog entry soon.  :0)

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