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Monday, December 10, 2012

2012 recap

"Thanksgiving is all over & mom put up the tree, looks like a merry Christmas, for everyone...including me!" Ok so any of you that know the "Bad little boy" Christmas song know that I changed the words some, but hey, it fits. (I love Ray Stevens version)

This has been an interesting year. Let me begin with last Christmas. I was in a lot of pain because of an exacerbation (no, I didn't finally learn to spell that, I found it in a dictionary!) of my CIDP. I took an extra Lyrica for a few days so that my brother wouldn't know just how much pain I was in while we played video games for 3 days straight. I wasn't getting weak but my endurance level dropped significantly. For my birthday in January my mom, my "twin" & I went to universal studios to go to the Harry Potter section. It was a long walk from the car to where I could get a scooter & we had to stop & rest 3 or 4 times. I had to use my cane (which did not make me happy) because my balance was getting pretty unstable. But I got my scooter & off we went. We had a blast! If you are a Harry Potter fan I highly recommend going, the castle ride is worth the wait. And if you are in a scooter they have wheelchairs for you to use going through the que but you have to be able to walk on a moving platform to ride the ride but my mom doesn't do rides & she was able to walk through the castle with us & not have to ride. The first trip there we didn't go into the castle because there was NO WAY I could have walked on the moving platform. But we had 3 day passes so we went back when I was feeling better.

As January went on I hurt more & more & got weaker & weaker. My Doctor added steroids to my IVIG infusions in February. My wonderful dad tore out the back steps & made new ones that are closer together and made different hand rails to make it easier for me to get in & out of the house. Through out February as I kept getting weaker I finally had to give up & use my walker in the house & the wheelchair if we went anywhere. I was really mad & depressed but I made it through to the other side. I never lost the ability to walk, I just had to use the walker. I didn't allow my new friends to come over because they had never seen me like that & I didn't want them to. Jen & Maribel...JJ & Twin. They met me years ago when I was just learning to walk again & was using my walker so I shouldn't have minded this time but, you know how pride is. "Pride goeth before the fall" That phrase works for so many different things if you think about it. But late in February they wanted to come out & see me so after a nap I agreed. Maribel had finished crocheting my blanket for me & she wanted to give it to me knowing it would help me feel better. (and it did) My blankie as I call it is a blankie of many colors. If you know the Dolly Parton song coat of many colors you know where I got the idea for it. & it was crocheted with love in every stitch. It is bright & obnoxious & I LOVE IT.

In March I started feeling better & then at the end of April when I was feeling good I fell in the yard & broke my foot. So through May I had a boot on it. We went out for Maribel & Peach's birthdays (we celebrated them together because they are a week apart) So we went to lunch & then Joann's & they MADE me use a wheelchair in Joann's. I wasn't happy about it but it was 3 to 1, 4 if you include the 10year old. So they won. Jen drew the short straw & had to push me around but we had a nice time. In June we went back to universal studios & through the castle. I was still wearing the boot but I was able to navigate the moving platform & LOVED the ride. (If you go I also recommend eating at the three broomsticks & getting a butterbeer) We didn't make it back for the 3rd day because time ran out on us but it was still fun.

I talked with my Doctor about tapering off the steroids in July & I am completely off them since October I think. I feel great. The best I have in years, probably even before I got sick. My endurance level is up, my strength, while not back to before I got sick it is the best its been since. I can sit on the floor & get back up without anyone helping me. I stood on a step ladder & hung Christmas lights. I can drive & go places by myself I feel almost human! So this Christmas is going to be great for everyone including me! (I know, I know, I hope I'm not jinxing myself too)

Next up is my birthday, January 3rd. I want minions & diplomatic immunity, but I know I won't get them this year either. (Hell, I'd settle for a date!) Oh well a girl can dream right? This year we are celebrating my birthday because I feel good. Last year even though we went to universal I didn't want to celebrate because I didn't feel good. Me & the girls are going out for some FUN this year. I think I want to try salsa dancing...if I can do it in my bare feet!

As my first year of blogging comes to a close I want to say Merry Christmas, Happy Hanukkah (I hope I spelled that right, I don't mean to offend if I didn't) Happy winter solstice, Happy Kwanzaa & Happy New Year. (If the world doesn't implode on the 21st!)

As always, believe in the magic of life.

Stay safe


Thursday, November 15, 2012

When enough is enough

Today's post comes to me from a conversation I had with someone on Facebook. Recently in the CIDP group I'm a member of, a post was made asking about people with CIDP that have had to rely on a wheelchair. I posted that I was in a chair for roughly 2 years but have been walking for the last 5. A woman named Marjory (I hope I spelled that right) sent me a message asking what type of exercises I did that helped me be able to walk again. I honestly can't remember any specific exercises I just know most of what I did I did on my own. Insurance didn't pay for much physical therapy & Lord knows I couldn't afford a gym membership.

The most therapy I had was in rehab & that was a very difficult time for me mentally so it really wasn't a lot of help. I got the basics, flex your muscles as much as you can as often as you can. Make them remember how to work. Mostly rehab taught me how to use a slide board, which at the time didn't help me mentally, because to me. learning to use a slide board meant, give up on the thought of walking again. I didn't really understand that until now, I just knew I was so MAD while I was in rehab. I hated everyone & every thing except, My mom, dad, brother, my sunshine & Peach. Oh & my 2 cats I had at the time.

I believed that God hated me & the feeling was pretty much mutual. I kicked out countless people from the local church that came by to visit. Cause who wants THAT when God hates you? I know people feel the need to "preach" to you when you are having a crises of faith, but I honestly feel that was something I needed to work out on my own. I didn't need someone who didn't understand my diagnosis or even know me, getting into my personal space & my mind is my personal space unless I invite you in (like in my posts). I wasn't worried that if I died while I felt God hated me & I hated her that I was going straight to hell. That isn't the kind of God I believe in. The God I believe in loves you no matter what, like a parent. You can tell your mom you hate her till the cows come home & she will still love you & do anything for you. She will still die for you no matter what. My God is a mom. That's why most of the time I refer to God as a her. Jesus was a man who died for us, but he was not God. It's just how I feel, please no one get offended.

Anyway getting back to my point. After I got out of rehab I was in & out of the hospital for months on end. Some of those times physical therapy was ordered sometimes it wasn't. Sometimes I was "discharged" from therapy because insurance wouldn't pay for more. They paid like $1,200 a month & anyone who has been to therapy knows that's like 6 visits & 2 visits were wasted on "new patient intake" & discharge so that left 4 visits to actually work on getting better. During those 4 visits I noticed a trend, the therapist would push me too hard & me not knowing any better at the time I did what I was told (most of the time). For anyone thinking "well that's what a therapist is supposed to do" you're wrong. A therapist is supposed to learn about the patient & either their injury or their ailment, be it stroke, brain injury, CIDP/GBS & so on.

The problem in that lies in the FACT that most therapist don't know jack about CIDP. You can not push a CIDP patient to the point that they are exhausted. "no pain no gain" does not apply. When we say we've had enough, we've had enough. Every time I push myself too hard I pay for it. One of the things with CIDP is that your endurance is cut to less than half of what you had before you got sick & you don't bounce back quickly. If on Monday I pushed myself too hard in therapy I couldn't get out of bed on Tuesday & Wednesday then back to therapy on Thursday where I couldn't do half of what I did on Monday. Then the therapist would go all drill instructor on me & we would wind up in a battle of wills, till my mom (who was always there with me) would just load me up & leave.

We didn't know back then that by none of us understanding the depth of the exhausting aspect of this disease that we were causing more harm than good by pushing me. I wish I had known more about this disease back then. Back then I couldn't even find anyone who had had it to learn from. I searched the Internet & could find the GBS foundation & the CIDP USA website but they didn't have the depth of information I needed. There wasn't any blogs or support groups like there is now. It wasn't until I found my living angel, Dr Chichkova, that I began to understand my disease. I still don't understand a lot, doctors don't understand a lot. What works for one doesn't work for another. One patient will have 1 "episode" in their lifetime & others will have them a few times, then there's a lot of us that if we aren't on meds to control them constantly, we will constantly have them. I fall into the latter category. If I don't have my IVIG on a regular basis, every 3 weeks for me, I can feel the first signs by the end of week 5.

I have learned the signs of when I'm getting to the point that I'm pushing too far & I STOP. What ever it is I'm doing I stop & rest. If we had known that maybe things in therapy would have gone better. So if you have CIDP & you're in therapy or just exercising on your own, learn when to say enough for today, because if you don't, tomorrow you may not have the strength or energy to get out of bed.

In case you're wondering, God doesn't hate me anymore & I no longer hate her. It only took a few months to get back on good terms. :)

Till next time, believe in the magic of life.


Sunday, September 2, 2012

Me & my big mouth

It's been a while since I posted anything, you know, when you have a chronic illness & you feel good you take FULL ADVANTAGE of it! I have felt great lately. I wouldn't say "normal" but for me, really good.

This weekend is my 7 year anniversary with CIDP, (I really should have celebrated with a new tattoo, maybe next month I will.) it's been a LONG 7 years but if I sit down & add everything up I'm better for it. I may have missed the opportunity of a lifetime when I got sick, but maybe, I dodged a bullet! We will never know (well, I might, but I'm not saying, I've got to learn to keep my mouth shut sometimes!)

In the last 7 years I have learned that I don't have to be perfect. At least not "society" perfect, I am however ME perfect. No one else could be a better me, I know that sounds a bit conceited but it's true. No one else could pull of my unique personality, my quirks, my smartass mouth, my loyalty, my support for those that I love, my friends tell me I have great legs so no one else can make my tree trunk legs look good! lol the list goes on... A friend even told me the other day that no one could compare to me. Sadly girls, he is married to someone else, but he will always be my best guy friend & 1 of 4 BFF's in general. He is 1 of the 6 people I trust completely. He is one of those friends that you can be completely comfortable with & even if you get mad at him you still love him. Again, yes, he's married, we're only friends.

He is the one friend I have never talked about in any post. I'll just call him "Red". Red was a big help to me when I first got sick. (I don't think he realizes this is the anniversary weekend my life went to hell, but that's what has made me talk about him now) He called me a lot the first year or so. Anyway, he always made me laugh even on my bad days. I would have a nurse dial his # & position the phone so I could talk to him at 3AM. He never complained about it, well not to me anyway. He is also friends with my brother so he could have complained to him. I don't know if he reads these posts but if he does I want him to know that even though I have trouble saying how I feel & that meanings get lost in text messages. I want him to know that no matter what I love him as my BFF. I know he is married & I would never do anything to harm that relationship...ever. But I also feel really good right now & I want to have fun while I can. So don't worry about me, I'm doing just fine with our friendship just as it is.

So back to my point earlier. I have been off cyclosporine for a year or so now and off the cellcept for about 6 months & my BP has returned to normal. Even on IVIG days it runs around 130/80 & lower the rest of the time. I am able to be more active now. Still not where I was but that's ok, I am where I am & it's a good place. I still have pain & it gets worse as my IV schedule comes due. Like now, my IVIG is scheduled for Tuesday & my hands are starting to burn from typing & my hips, shoulders & neck hurt. My hips have been hurting since Friday & I can't wait for my "liquid gold" I'll feel better again by Friday. Which is good because I have plans to go out of town for a few days in a couple of weeks.

Oh I almost forgot, I found this fabulous new quote in a book I'm reading
"What nourishes me, destroys me"
Isn't that applicable in so many aspects of life

Always believe in the magic of life

Till next time, stay safe

Saturday, July 28, 2012

I will not feel sorry for myself...for long

If there is one thing that I learned from the rehab "psycho" Dr it is that it is ok to take 5 minutes to feel "why me" "I can't" type of feelings. It is perfectly normal, especially in the first few months or year of being diagnosed. But to feel them for 5 minutes then focus on the more positive aspects. Believe me I know how hard it is to do that, but I know it can be done.

 For instance I was just reading a book and the main character was running & thinking of how much she enjoys running. I hated to run in PE in school because it was something I HAD to do, not something I WANTED to do. When I wasn't in PE I was a fast runner and I really enjoyed it. I use to go to the track after school & run just because I liked it. I also ran around our neighborhood some, a "cross country" kind of thing. The one day in PE that I actually ran the mile we were required to instead of walking it with my friends my teacher was so mad because he saw the potential I had if I would have just tried. When you're 13 pissing off a teacher is more fun than getting a good grade. (at least in my opinion) So now, when I am not physically capable of running I think of how much I use to enjoy it & kinda feel sad that I'm not able to anymore, but I can still swim.

I was an awesome swimmer. Again something I enjoyed when I didn't have to do it. If I was told to do something I didn't like it anymore. Which brings me back to my point. I haven't been able to go swimming since I got sick 7 years ago. We don't have a pool and none of my friends have a pool & its just too dang expensive to go to the Y but during an IVIG infusion my nurse & I were talking and I mentioned how much I missed the sun & water and she invited me to come over to her place to go swimming. I was so excited. I went over to her house the next week & swam for the first time in over 7 years! It felt so good. I was exhausted swimming just one lap but I did it! Freestyle, back stroke & breast stroke (I was never good at butterfly so didn't even try) I had my own little individual medley relay and I loved every second. So while reading about a girl who was on a run & loving it I started to feel sad that I couldn't join her, I am happy that I CAN SWIM. 1 lap, but hey its 1 more than none!

So when you feel the "why Me's" coming on be sad for 5 minutes and move on to more happy things. and as always,

Believe in the magic of life

Wednesday, June 27, 2012

What a hectic life

Its been a while since I posted anything. First I broke my foot, then I got sick, then internet problems. If you have read some of my other posts you know that I had a relapse of my CIDP symptoms begining in January and cresting (as I like to call it) in  February then I started to feel better. Well I was feeling really good April 25 and decided to open the gate when we were leaving one afternoon so that mom didn't have to do it. (I hadn't been driving or walking in the yard because I didn't feel strong enough) So I made it 2 steps & stepped on something and my foot rolled and I went down like a sack of taters. I was able to get up off the ground on my own, which I wouldn't have been able to do a few weeks earlier, and my foot hurt but not real bad so I cleaned the scrape on my knee & we left to go to town. When we got to walmart my foot was hurting more than when I had fallen but still, I could walk on it so, I did. When I got home it was screaming at me.

I thought about going to the ER, but what do they do for a broken foot? They take x-rays, put you in a boot & send you to an orthapedic doctor. Yeah they give you something for pain but I have some left over pain meds from my LAST broken foot, I didn't need anymore. So I had mom look for my boot from the last time. I figured if I still had it I would use it & if the pain got worse then I would go to the doctor...well aparently during a "spring cleaning" we threw out the boot. So I called a local pharmacy/medical supply. I figured if it wasn't real expensive I would just buy one and if  pain got worse then I'd go to the doctor. (if you haven't noticed my now, I hate to go to the doctor unless its my fabulous Dr. C, my neurologist) Well a boot was $130! yes I said one hundred and thirty dollars! FOR A FLIPPIN' BOOT!

So I said ok, I'll go to the walkin clinic, then the x-rays & boot will go on my insurance. they took 2 x-rays, told me yes, its broken, go to an orthapedic doctor, heres something for the pain. They werent even going to put me in a boot they were giving me the boot...out the door! I had to ask for a boot and the Dr said "Oh, yeah, I forgot" and got the nurse to get me one. I didn't bother going to the orthapedic doctor because when I broke my other foot he took more x-rays and said to come back in 4 weeks. then in 4 weeks he took more x-rays and said I was good to go. So if this break wasn't as bad as the last one I saw no point in going for more x-rays and doctor bills. Now my foot is still tender on the top where it bruised but it feels fine.

Then I got a cold in May, but IVIG knocked it out so that wasn't too bad. And my internet connection sucked so I couldn't post, but now I have verizon internet so hopefully all will go smoothly from here. If you haven't noticed, I added a link to my etsy shop.(its on the right side of the screen) I have about 8 necklaces up for sale currently that I have made. They are all so pretty and I made them with my burning, shakeing hands all by myself! So tell your friends about my shop on the etsy website. It's a way to make a few extra bucks to buy my dog treats :) We CIDPers need to stick together & support eachother.

Always believe in the magic of life.

Live vicariously through others...its safer for us that way!

Sunday, May 13, 2012

Conversations with myself

I was having a Philosophical conversation with my dog earlier and I had an epiphany. (I know! Right! An epiphany! The whole talking to the dog thing is completely normal, but an epiphany, wow.)  I realized that to me a star is the symbol of God, not a cross. A cross is a symbol of Jesus, which I do believe is the only son of God, but a star is a symbol of God. Here are several reasons why, they are just now clicking together into my reasoning.

1)      A star is in the sky, or the Heavens you may say.

2)      My dog pointed out that his given name is Sirius and that Sirius, is a star located in the constellation Canis Major. (He is so intuitive!) The story of Orion & Sirius is interesting, I'll look it up and get back to ya with it, I don't remember it at the moment.

3)      Dog is God spelled backwards, coincidence, or divine intervention?

4)      My dog has healed my family. We had lost my Grandma and my other dog in the year before we got him and there was a hole in the family.

5)      There are 5 pints to my star of choice, in some customs a 5 pointed star represents a person. I see God in people, not buildings.

6)      A pentagram is actually a sign of protection, not a sign of the devil, God is the ultimate protection.  

7)      I named my dog after Sirius Black from Harry Potter, Sirius was Harry’s GOD-father & I always felt that Sirius meant hope to Harry, what does God represent to me? HOPE.

8)      My dog is the reason I chose to fight to get my CIDP under control and not let it control me. Well, ok, my dog & my mom but that’s a story for another post. 

              I’m sure I’ll think of more reasons later, the human mind is adept at spotting patterns even if the pattern is only IN OUR MINDS. But today I would like to wish all mothers, a happy mother’s day, from the bottom of my heart. You are the reason we all strive to do our best. Our dads are awesome, but who do we all want when we are sick? Our moms. Nothing compares to a mother’s love. No one is prouder of our accomplishments than our moms, no one is more encouraging than our moms and no one over looks our failures like our moms. Any woman can have a child but it takes a special woman to be a mom and I got the best one. 

              Just to clarify how our conversation came about. Every night when I am ready for bed he jumps up on the bed for a hug. Most nights he gets his hug and then goes to his room for the night. (his room is the bathroom currently) but tonight I pulled him into my arms and cuddled him like a baby and talked to him about what fun I had yesterday hanging out with my mom and Maribel. We went to Universal studios islands of adventure & hung out in the wizzarding world of Harry Potter most of the day. I talk and he listens and then uses telepathy to tell me what he wants to add to the conversation, he doesn’t talk. We have conversations about once or twice a week. He is very smart. I may start renting him out as therapy. Not only can he help solve your mental problems he can make you healthier, by spending time with him your blood pressure will actually go down, mine does.
Always believe in the magic of life, cause it believes in you.

Sunday, April 22, 2012

Rehab, it's not just for quitters

                 Ok, back to my journey with CIDP. I spent 3 horrifying weeks in hospital “B” and from there they sent me to rehab at Tampa General Hospital. I could not stand, let alone walk. I could just barley roll over in bed and couldn’t raise my arms high enough to feed myself when I got to rehab, but they said I’d be walking by the time I left so I was optimistic…what a letdown that was. Not because they did anything wrong, per say, but things could have been handled differently.

                By then end of week 1 I was sitting up and dressing and feeding myself. I was exhausted afterwards and needed to take another nap but that’s normal, or so I’m told. I had an hour of occupational therapy (OT) first then an hour of physical therapy (PT) then lunch then more PT then the rest of the day was “free time”. I was visited by the psychology department and they have a “recreational therapy team” that also visits patients and tries to get them to hang out with other patients and “have fun”. What they really needed was someone to sit and talk to the patients, not analyze them, not try to make them outgoing when they just aren’t that kind of person to begin with, someone who the patient can feel comfortable talking to that’s not a friend or family member.
                As you know from previous posts I love my family and friends dearly, but I really needed someone to talk to that wouldn’t document everything I said and would just let me vent. When your life is turned upside down and you are completely dependent on strangers, or even on someone you know, it’s scary, frustrating and depressing and so many other words I can’t even begin to say and you need someone that doesn’t say “you’re depressed, take this pill” I told them I wasn’t depressed I was MAD. I was mad at God and decided he hated me, why else would all this happen? I just couldn’t fathom why else this had happened to me. I was a good kid, ok I was 30 but still, I was working full time, paying my bills, not cheating on my taxes, not doing drugs. Ok I wasn’t going to church either but I’ve always believed that God is everywhere not just in church. I can still be Christian without attending mass. But anyway, that’s a whole other issue and a hot button for nearly everyone so I won’t go on about my personal beliefs.

                By week 2 they were having me roll myself down to therapy then do both OT & PT then roll myself back up to my room for lunch then roll back for afternoon session then roll back to my room for dinner. HELLO! What’s my diagnosis? GBS (at the time they still said GBS not CIDP) What is one of the major symptoms? FATIGUE! The idiots, by the time I rolled myself the 200 feet to the elevator to go down to therapy I was exhausted. I had fed myself, brushed my long hair and pulled it into a ponytail, brushed my teeth, gotten dressed then roll a wheelchair 200 feet to the elevator then I needed to roll another 150 feet to therapy then do therapy. What the hell were they thinking? Finally I convinced them that it was too much on me and they had someone come get me and take me back so that I wasn’t too tired out.
                During week 2 the psychologist threatened to have me committed, because I told him to…well, nicely to piss off. He decided that all my problems were my dad’s fault and he filed a report saying that he would not release me to go home with my dad because I wouldn’t be safe! I don’t know how he came to that conclusion. I know one day when he stopped to see me I was upset. He asked why and I said because I was disappointing my dad, I knew I wasn’t, I was sick and dad loves me no matter what. I was disappointing myself really but apparently dads are a hot button for that doctor. My brother told me he was obviously an idiot because people are only psychologist because they couldn’t be a psychiatrist, that a psychologist is a glorified guidance counselor, he had a point.

                 So after the stress of that I began another relapse and started to get weaker again. By week 3 I had to receive IVIG again and by the end of it I was feeling a little better and the social worker said I had to go to a nursing home because I wasn’t getting any better. Again, I freaked out. In my mind nursing homes is where you send someone to die. My grandmother had died the year earlier in a nursing home and she went there to die because no one could take care of her. I felt like that wretched woman (social worker) and the psychologist were sending me off to die. I was 30 years old! I had just begun to live, now someone was sending me away to die! I cried and cried and mom just held me and rocked me like she did when I was a little girl. She told me everything was going to be ok and they would take care of me and they would not let me die. The next day they brought me home…wheelchair and all.
                So, this memory is making me cry, again, so I’m off to blow my nose and wash my face. Just know that I have gotten SO MUCH BETTER and I no longer think God hates me. Till next time, keep believing in the magic of life. 

                On a side note, about a month later someone form an “independent survey company” called to do a survey on my stay in rehab. Oh boy did I have fun! I told them the nursing staff was awesome and specifically named two of the nurses that had helped me beyond what I thought their job description called for. But I also let them know exactly what I thought of the psychologist and what he had pulled. The girl doing the survey was horrified and I found out that that psychologist was fired about two weeks after the survey had been done. I HOPE that I had something to do with that!
                I saw one of my nurses about two months later and she said that several people had complained in a survey about that “Dr” and he was gone. I told her what went on with me and she said she had heard he had his own “daddy issues” that they hadn’t spoken in 20 years. So maybe all those years in college didn’t teach him how to deal with his own issues and they were his down fall.

                See, I told ya, life is magical J



Monday, April 16, 2012

The little things part 3

                Now on to my 3 besties, Crystal, Laura & Maribel. Each one of them has a special place in my heart. I would be lost without any of the three of them no matter how little I may see or talk to them with their busy schedules. I love them equally (no fightin’ girls) but I’ve known Crystal longer so she is first up on the block.
                I met Crystal (AKA Sunshine) in the spring/summer of 2001. She was this bubbly vibrant ray of sunshine in an otherwise cloudy pool of employee prospects. She wasn’t even looking for a job at the time, she came in to the store I managed looking for something I was out of stock on at the time, it took me a few months to convince her she wanted to work for me. We became close friends fast and stayed close way beyond either of us working for that wretched company. She was the best dang employee I had, ever, and she made work fun. We use to pick on this one other girl who worked for me, we were the mean girls from high school, but the sad thing is that the other girl was too dumb to figure that out!
                Ahh good times, but I’ve talked about how awesome Crystal is in a previous post so on to Laura (AKA Peach). Peach isn’t a nickname I gave her, she came to me with this one. I met Peach summer of 2003. She was my neighbor’s stepsister and I was introduced to her as “Peach” it wasn’t until about 6 months later I found out her name is Laura! But I don’t feel bad about that because she spelled my name WAY wrong Charrol instead of Cheryl, I guess she takes hooked on phonics to the extreme, but hey if it isn’t in spell check I can’t spell it either.
                Before I admitted that there was anything wrong with me Laura was there watching and worrying just like the rest of my family. I’ve said before how she was there when I went into surgery and when I came out. But I haven’t said how she came to visit me in rehab and took me outside & sat with me just so I could breathe some non hospital air. She brought me sushi from our favorite restaurant and best of all, this made my roommates jealous, she gave me a facial while I was in rehab. For anyone who hasn’t experienced the horrors of extended hospitalization, let me tell ya, I felt almost human again after that. True friend, love her.
                Now Maribel (AKA twin) I met Maribel through Peach, they go to the same church. I call her twin because we are extremely different but so much alike. When I met my twin I was just barely walking with a walker and Peach convinced me to go bowling with her church group. I figured what the heck, I can hardly walk but I can sit & watch just to get out of the house.  Maribel was cool, very nice girl but I really didn’t feel good so it wasn’t till a few years later that we got to know each other but now it’s like I’ve found the other half of me, and I’m FABULOUS! She has taught me basic crochet. I was working on a blanket for myself but I have a short attention span and got bored with it so she finished it. It is huge & beautiful. It’s my blankie of many colors, like Dolly Parton’s song coat of many colors. It’s about 15 different skeins of yarn in various colors because I wanted a bright, cheery blanket for my bed because I spend so much time in it with IVIG infusions. So now when I feel yuck & have to lay down I look at it and know that someone loves me enough to finish my huge crochet project for me just because she cares about me.
                I’ve had good friends all my life but these three women are part of my family. I’ll post some adventures with them from time to time as something makes me think of them. Until then keep thinking of the little things that make you happy because when you forget the little things, you forget the big things.
Believe in the magic of life.

Thursday, April 12, 2012

The little things, part 2

I have SO MANY pictures of him, this one is one of my favorites.

               This was an IVIG week so I've fallen behind on my posts & caatching up with everyone on facebook. I get 4 days every 3 weeks but I seem to be doing well so far. Last week I talked about my family. This week it’s my dog. It should be my friends but I just have to rave like a lunatic about him. He is the light of my life and as I write this he is sitting in HIS chair watching me. He is a mama's boy & we suffer from seperation anxiety some days today he is just in cuddle mode.

                His legal name is Sirius Black, yes I’m a Potter geek. I was reading the series when I got sick and I was on book 4 when I got him. When I read book 3 and Sirius asks Harry to live with him I felt like Harry finally saw hope in his future for the first time in his life and when I was reading that book I didn’t see any hope in my future. The light at the end of the tunnel everyone kept talking about was a train! I was at my lowest point in my CIDP ordeal and it was not pretty. So reading that book and seeing that Harry had hope made me feel better for him. I’m an avid reader, I don’t just read books, I absorb them. They become part of me if they are really good and I loved the HP series. (For the 5 people in the universe that don’t know, Sirius Black was Harry Potter’s God-father, I don’t feel like I just spoiled that for you because, come on, the books have been out over 10 years if you were going to read them you should have done it by now!)
              I won’t give any details on how I acquired Sirius cause that’s scheduled for a much later post. I've got to keep people interested and I have a flare for the dramatic! Maybe I’ve just watched The Young and the Restless for too many yearsJ
              Like most of my family members Sirius has several names. He has been called monster, brat, baby, mom and who knows how many others. Mostly I call him baby or pigwatt. He is 6 now, when I got him he was about 7 weeks. He is a terrier mix, looks like a shrunken German Sheppard. We have had dogs and cats all my life but he is the first little dog.
                He likes everyone, he’s never met a “stranger” they are all his long lost friends. We go to lowes, petsmart & his favorite (and mine) starbucks. He gets a tiny cup of whipped cream & a bowl of water. I take him about once a month & he just sits & people watches. I want to get him involved in project P.U.P. (pets uplifting people) but he has no formal training. He doesn’t “sit” when I tell him. He doesn’t “stay” real well but he is really good around wheelchairs, walkers & canes because I use them from time to time. When I got him I wasn’t walking so he sat on my lap in the wheelchair. Then as I started walking he stayed out of the way of the walker & cane without being “told”. I had thought I’d be that crazy lady that gets her dog a stroller. Here’s my reasoning, my balance sucks so I have to have mom hold his leash when we go places. But if I had a stroller he could ride and I could push it and it would help me keep my balance. That way he doesn’t even have the chance of knocking someone over & if he gets tired he can sleep.
                He has learned what bath means and gives us dirty looks or leaves the room every time it’s said. So now we either spell it or say “shower”. If I make a strange noise at night when I’m sleeping, (apparently I was snoring weird one night) he goes to get my mom. He runs to mom & dad’s room and jumps up and hits her side of the bed and wakes her up then runs back to my room. If she doesn’t get up he repeats the process till she does. It’s another thing he does without being trained to do it. He was about a year when we noticed it; I don’t know how long he had been doing it. He is so funny, one night I dropped my laptop and he came running into my room and looked at me like “Are you ok? I heard a crash, are you hurt? Do you need the blonde one?” (We call mom the blonde one) I looked at him and said “I’m ok, I’m ok. Don’t wake anyone up, I’m fine.” He jumped up on my bed and made a threat assessment (sniffed me all over then checked my breath, something he does every morning for some reason, I’d really like to know why.) & settled down in the chair by my bed for the night. He’s just weird, and frankly I know I AM TOO!
                He will wake me up in the middle of the night just to cuddle. I’d get pissed but, he’s a dog, he doesn’t understand mama is sleeping, just that he wants a hug. Like I’m sure I did as a baby. AND finally, just like everyone else he LOVES my brother, when Mike comes over he gets over excited and has an asthma attack! He does the same thing with my friend Maribel. 
Well that’s all for NOW about my baby. Yes, when I look obsession in the face I say “don’t I know you?”

Good night my friends & always believe in the magic of life.

Sunday, April 1, 2012

The little things, part 1

               I was polishing my nails earlier (pretty sparkly blueJ) and it got me thinking about all the little things we take for granted, i.e. polishing your nails, brushing your hair or teeth, um, how to put this delicately…cleaning yourself after relieving yourself, you get my point. All things we do without thinking about it. It’s like breating and I wanted to write about my experiences with things like that but if I put those things first I wouldn’t mention my family & friends. Not that I take them for granted (I don’t think) but for me they are natural, just like breathing. So in part 1 of this blog I’m going to focus on my family.
                I was born in northern New York, a teeny tiny town in the middle of the Adirondack Mountains. I had to ride my bike 3 miles up the road to see my BFF Suzie to find someone to play with other than my brother. He was a teen by the time I was old enough to ride that far alone, before that I played with him & the neighbor boy that was mean to me, so I was happy when I turned 7. (Before you think OMG she rode her bike 3 miles by herself at 7! It was the summer of 1982 so I was 7 & ½ and on the way there I passed 7 houses and of those 7 I was related to 5 of them. And times were safer back then, the biggest worry was bears. )
                 I have just one brother, Michael, whom I refer to as many different titles, and mom and dad, that’s it. I had awesome grandparents and several Aunts and Uncles and cousins but we moved to Florida when I was 9 so they weren’t a big part of my life after that.
                I can’t say that I thought all families were like mine, but I did think all families loved each other like mine did. Till I spent the night with my friend Mary when I was 8, let’s just say if what happened that night happened now, child services would intervene, I hope.
                So when we moved to Florida we were in a more populated area and I had kids my age right down the street. Chrissy, Kathy & Kelly. Kelly’s family was like mine. Mom & dad still married, went to church every Sunday, had family dinners, said please & thank you & I love you. Kathy’s mom and dad divorced about 3 years after we moved here and it was nasty, they wanted to drag all us girls into it. It continued into our teen years. But before the divorce they went to church every Sunday, (which may have been the problem, that’s where her mom met the man she had an affair with). They had Sunday dinners, but didn’t say please, thank you or I love you to each other. Chrissy’s family was WAY different than mine. Mom & step-dad (real dad had been killed in-front of her when she was 3) and she had 2 half brothers and 1 step-brother. They didn’t g to church, didn’t have family dinners ever, they never said please or thank you or I love you to anyone. Chrissy’s mom would slap her in the mouth when she got mad at her, and she had braces, even if you don’t have braces, you don’t do that. It’s one thing to give a light “pop” just to get the kids attention if they say something nasty, but her mom didn’t just tap her, she drew blood.
                There was so many things different with my friends’ families as I grew up and made new friends through school. I’d say wrong but they may just have been different. No family was like mine and I realized early just how lucky I was to have the one I did. Don’t get me wrong, we had our trouble like everyone else but at the end of the day we forgave and said “I love you”. My parents have always been supportive of the things Mike & I did, well as long as we weren’t hanging ourselves from the swing set or swinging from the lamp. Yes, Mike hung himself from the swing set by his ankle, I don’t know why…he’s a boy is all I can think of and we swung from the lamp and broke it, then lied about it, got a spanking and learned not to lie to mom & dad, something we still abide by. If mom and dad thought what we were going to do was a mistake they let us know what they thought, but if we weren’t going to get hurt ourselves or someone else they let us do it and we learned our lessons or proved them wrong, whichever the case was. The world didn’t end and we got stronger and that may have made us more understanding. I’ve made my share of mistakes but I survived them and my family still loves me. So it amazes me when others say their parents aren’t supportive of them with their illness.
                My dad is a man of few words. We know exactly what he is thinking by the look in his eyes, he doesn’t need to say anything. But if physical work needs to be done he does it and doesn’t ask for money for anything, not even materials. When I got sick and we found out that I would be in a wheelchair when I came home, he built a ramp and fitted the house to make it safe for me. The chair was too wide for my old bedroom so he and mom gave me theirs and moved their things into my old one and never complained.
               I was about 3 maybe 4 and we (me, bro & 3 cousins) were playing on the picnic table at Grandma’s, there was a sheet of plywood on the top to make it big enough for us all, and all the other kids had gotten down and I was last kid standing. No one would help me get down, so I tilted it and slid down while still standing. I didn’t have any shoes on! I had slivers covering the bottoms of my feet, it hurt so bad. Michael carried me into the house and told mom, Gramma & Gramp what happened. He put me down in Gramp’s chair and they all tried to get me to let them get the slivers out, but I wouldn’t let anyone touch them till my dad got home from work which was going to be hours. Mom said I sat quietly with tears running down my face but not a sound came from me. I wanted dad. Dad was my sliver picker, he never hurt pulling them out. In a kid’s mind I guess it’s better to wait hours in pain than to have more pain for a few minutes.
                My mom, there isn’t enough words in any language. My mom is the definition of the word mother. No one else’s mom can compare to her. She has sacrificed so much for me I cannot even begin to list them. When I was in physical therapy she drove me and stayed there and encouraged me through the pain and frustration. My therapist said one day how great she was and we looked at her like she was speaking a foreign language. To us that’s what you do for family. Live, die, fight, pray, love that’s just what you do. She came to the hospital pretty much every day. There was some days she couldn't make it because of a client coming in (she is a semi-retired hairdresser, her salon is an addition on to the house) some days if the weather was bad I'd call her and tell her to stay home. I didn't want her driving in the rain. She would argue with nurses and doctors when needed for me. She was my patient advocate. But she has been great all my life. She fought with the school when I was in trouble for whatever and get me out of it if it wasn't my fault. If it was something I did well, I suffered the punishment there and at home. My dean was afraid of her, by the end of senior year they all were.   
                Now, my brother… In my eyes he is perfect, in reality I know he isn’t. When I was first learning to talk I called him “big bra” and he could get me to stop crying when even mom couldn’t. As we got older I just really looked up to him. We are Catholic, the first day he was an Altar boy I cried. Mom said she looked down at me and I had tears running and she asked me what was wrong and I just said “I’m so proud” I was about 4. So now our running joke is he is my god. So if I ever mention god with a little “g” that’s him. I also refer to him as “St. Michael” because with my Aunt Ethel he could do no wrong. I was the bad seed AND all my friends have the hots for him so that annoys me. When I say all, I mean ALL, even the ones that haven’t met him. Ok so I only have 3 friends left but still, eesh.

                He always protected me growing up. He’s 4 ½ years older. When I got sick he paid my car payment & insurance till I got disability and could pay it. He bought me a laptop so that I could use it when I was in the hospital, I was there about every 3 weeks at the time. With his job he couldn’t come see me as much as he wanted so he wanted to do something nice for me. One day one of my friends said she was jealous of the relationship he & I have. She said she hadn’t talked to her brother in 6 months and that was just about their mom. I said to me that was just weird, it would be like not talking to myself for 6 months (I do that frequently. I argue with myself too, that way I ALWAYS win.) Since then the two of them have become close so I inspired someone! Yea me!

                So, the moral to my lengthy post, never forget the people that love you. Never miss an opportunity to say “I love you”. Never take for granted that they will be there tomorrow, you never know what tomorrow will bring. Just because you aren’t blood related to a person doesn’t mean you aren’t family. If you love them & they love you, no matter what, they are your family. Blood doesn’t make family, love does.

                While I may have a crappy disease I have the best family.

                                I am blessed

Monday, March 26, 2012

Oh, for the love mom!

Ok so getting back on track with my history I am now on to my next fall, ER visit, hospital stay. Oh what fun it was...NOT.

I had come home from the stay for the blood clot Wednesday. I kept myself moving, I was really tired but planned to go back to work on Monday so I didn't want to get lazy. I was still staying with mom & dad and mom & I decided to go pick up a pizza late Saturday afternoon. She would drive of course, but I got to get out and get some fresh air. As I took a step out the back door I went down like a sack of taters. I felt it coming and there was nothing I could do, just go down and struggle to get back up after. I cried instead, then had them help get me up and to a chair. I called Dr Greasy, but he wasn't on call, one of his partners was, Dr Dick. When Dr Dick called me back he proceeded to tell me that GBS does not relapse and it was ALL IN MY HEAD. There was nothing wrong with me. Not to go to the ER because he would just send me home. So I hung up with him and called Dr Quack, he also was not on call and I talked to the neuro that was on call. Dr Suzie. She said she wouldn't treat me because I was Dr Quack's patient!

So I told mom & dad that if going back to hospital A. was not going to get me anything but dismissed like I'm nuts, I was going to hospital B. We went to hospital B to ER and explained what I had been diagnosed with and what tests were done and what treatments were tried and about the blood clot and what doctors I saw. I was admitted and they wanted to do more tests, which I expected. They had to give me FFP (fresh frozen plasma) to thicken my blood back up for what ever test they wanted to do. They did nothing quickly in this hospital. They left me in a room for aweek without any tests or procedures or treatments of any kind. Oh don't get me wrong, they ran just about every blood test known to man but nothing that seemed to need the FFP. All came back fine.

Week 2 I got moved to a private room because I'm allergic to flowers and the lady I was in a room with had a whole flower shop in the room. I was having trouble breathing and was put on oxygen. My night nurse freaked me out & I made my mom come stay nights with me. By week 3 I couldn't move anything but my head and that was only from side to side, I couldn't pick it up off the pillow. I couldn't even lift a finger, literally. I couldn't take care of my personal NEEDS and they were not bathing me. I smelled! My mom complained to the social worker and she had orders written to clean me. The fact that I couldn't take care of myself was bad enough but the degradation of having someone else do it for you is unimaginable.

So my mom had started staying with me most of the time because I COULD NOT feed myself or other personal hygiene needs, I cannot stress that enough. Unless you have been in that situation you can't understand. So she was there in the morning for breakfast to feed me, then she left & my friend Crystal (my sunshine) fed me lunch and mom came back to give me dinner & stay till I felt safe enough for her to leave & get some sleep too.

One particularly bad day Crystal was there during her lunch to feed me & visit with me. I am kinda ashamed to admit it but I put her through hell that day, but there was no way I couldn't do it. I planned my funeral. She held my hand while I cried and told her that I just knew I was going to die. I told her that under no circumstances was Amazing Grace to be played. I told her she was family & I wanted her to take care of my brother for me because I wouldn't be there to do it. My dad & brother would take care of mom but Michael would need someone. I told her she and my friend Laura needed to sort through my stuff because it would be too much on mom. And I cried more. I just couldn't take it anymore. I had held in all my fears and unleashed them on my BFF, my sunshine. I acceepted that I was dying and I needed to know my family was going to be ok.

She continued to hold my hand and let me get it all out then through tears and hiccups of her own she said "SHUT THE HELL UP! YOU are NOT going to die! You are my stubborn Cha-Cha and I love you, you WILL be ok." She was right of course, but I had some rough roads ahead of me still.

I didn't know it at the time but my mom thought I was going to die too. She called Michael after leaving me one night and cried to him so that she felt better. And I talked to his neighbor, a friend of ours, and she said she went to see him after he talked to mom that night and he was curled up in a ball on the couch rocking himself.

Crystal, my sunshine, if you read this I love you with all me heart and I'm so sorry for putting you through that. I know it was hard for you too. You will always be my sunshine.

Michael, my big bra, my god, I love you with all my heart too. Thank you for being the best big brother EVER. Oh and I'm adopted! (not really just an inside family joke)

Wednesday, March 21, 2012

current 3/21/12

I just wanted to deviate from my history for a quick post and give an update on how I am currently doing. I was feeling good in 2009 and we (my Dr & I, not just her) decided to make some changes to my medications, some were good and some not so much.
 I know you're probably thinking why change when you felt good? But as people who are on immuno suppressants know, they are bad for you in the long run so the lower the dose the "better" and if you can eventually get off them its even better. I was on 200mg of Cyclosporine daily and like I said I was feeling good, I didn't sleep much but I was ok with that but I developed a tremor in my left hand that I just couldn't take anymore. I was on Propronolol for it & it improved some but after a while it got bad again. So we decreased the Cyclosporine very slowly. like 25mg every 2 weeks so that we weren't giving my system a huge shock. If you have any kind of chronic illness you should know not to shock your system to severely because you can throw yourself into a tail spin.
  When I got to 50mg daily I got strep throat and after I got over that my CIDP came out of remission & attacked me. I got weak again & was hospitalized in September & October of 09 so we increased my Cyclosporine back to the 200mg to stabilize me & added IVIG at home through home health. IVIG had been approved for use on CIDP patients which meant I didn't have to fight so hard to get it. The long term effects of it are much better than the long term effects of the Cyclosporine so once I was stabilized again we could decrease the Cyclosporing & switch to IVIG. By July 2010 I needed a mediport because my veins were crap. I didn't want it but it was the best decision I have made in years! Then we started decreasing my Cyclosporine again around October, maybe December, don't exactly remember. I had a friend get VERY sick with migraines in January of 2011 and I was given some misinformation that she was dying and it was very hard to handle. She is one of my 3 BFFs & she has a little boy I adore, so to say I was stressed was an understatement.
 One more thing to know it that stress can screw up anyone no matter how  healthy you are, but to a chronic illness it is debilitating. At that point I was back down to 50mg Cyclosporine and IVIG every 8 weeks which had to be changed to every 4 weeks. Then in March 2011 my home health company dropped me from their service the day my next infusion was scheduled to start, NO NOTICE just a "you're too healthy for our services" I was already starting a decline in my strength and it took 2 weeks to get a new company to take me on with a new pharmacy. I was using a walker and a raised toilet seat and couldn't leave my house because of the stairs. That nursing company kept me for a few months till my schedule was changed to IVIG 3days every 3 weeks, then they said they didn't have the staff. (well the company didn't tell me my nurse warned me a head of time)
 So again rush to find a new nursing company. I must give Crescent Healthcare in Panama City, Fl credit, their whole staff has been great and Eva the director of nursing is AWESOME! They found me a new company within a few days and my Nurse, Donna lives about 20 minutes from me and we get along great. We share common interests, she is a good nurse she takes care of me. I adore her and she is a great help when I'm feeling down.
   My Dr and I decided in August 2011 to decrease the Cyclosporine to add CellCept because we had heard good things about it. Well unfortunately it was not great for me. I have been on a steady decline since October and hit rock bottom in February 2012. I needed my walker at all times, I had to get a lift chair, I had to install hand rails on the toilet ( I litterally had a throne!) Again I couldn't leave my house. I told my Dr how bad I was and she added IV steroids to my IVIG and increased it to 4 days every 3 weeks. I just had my 2nd dose with the steroids and we are decreasing the CELLCEPT because it is not working for me and I am begining to" bounce back"  Donna has really been a great help, just having another human to interact with is great and the fact that she cares about me means a lot to me. She even likes my little dog!  Currently I can leave my house even it it is to just go sit on the deck outside. I need my cane to do so but it is an improvement and I know that by the grace of God and my beloved Dr C. I will get better again.

Ok so that was longer than I planned but you had to know how I got there and back again!

Till next time, Believe in the magic of life

Thursday, March 15, 2012

The DVT (blood clot)

Now on to my DVT, fancy name for a blood clot. I had been out of the hospital about a week, give or take a few days, and my right arm seemed a little swollen on Saturday night. I hadn't been told to watch out for anything when I was released from the hospital. My doctors had told me that the plasma pheresis would remove my clotting factors so I had no reason to suspect that one would form. On Sunday morning I woke up and my right arm was so swollen my bracelet was making an indention. My mom took me to the ER and after hours of waiting a sonogram was done (by a girl I graduated with that my brother had gone out with, that I didn't particularly like, but she was professional so it was ok) and it was diagnosed that I had a DVT, deep vein thrombosis. Just a fancy way of saying a blood clot. I'm sure there is technically a difference, but honestly blood has clotted in your veins. I'm just sayin' if you aren't a doctor its the same thing.

So I was admitted again, given lovonox shots and had a few more tests. After my stay in that hospital and after I got a new doctor, I found out that it was actually pretty serious. My DVT started at the incision in my neck, from the tube for my plasma pheresis treatments, and traveled all the way down almost to my elbow! It was something that could have been prevented, or at the least not been so bad, had my Dr listened to Judy, my plasma nurse. If I had really thought about it I would have suspected something like that could happen. Any time you stick any kind of foreign object into your body your immune system kicks in and attacks it. A tube in my neck was a foreign object and my immune system was already confused and attacking me, I should have known. But shoulda, coulda, woulda never helps, so what is, is. I just hope someone reads this and it sticks in their minds for the future.

I was suppose to return to work the Monday after I was admitted so I had to call in and tell them I was in the hospital...again. They were real good about it and told me to get well and let them know how I was doing and when I could return. On Wednesday my Dr, Dr greasy. I call him that because when I first started seeing him he was well spoken, clean cut, physically fit and very personable. But he let himself go. He grew a shaggy beard, not a nice beard like my dad, a shaggy one, like ZZ Top only not as long. He gained weight and must have forgot how to wash his hair, hence Dr greasy. I found out later that he was having an affair with one of his partner's wives and the practice was in the process of tossing him out. One of his partners was his wife's brother. (I live in a small town and am friends with a few members of the local country club so I get all the good gossip, even if it is a little late) So anyway Dr greasy came in and told me I could go home and to make an appointment in a week to have my blood checked and blood thinner medication adjusted if necessary.

So my DVT wasn't a horrid experience (thank God) but it was part of my CIDP experience so I thought I would write about it.

"Stay thirsty my friends" "May the force be with you" and Believe in the magic of life.

Sunday, March 11, 2012

"Why didn't you go to the Dr.?"

This is a little out of order in my trying to give a 6 year history but needs to be said and its too long to add to another post.

When things first started happening to me no one ever said "you should go to a Dr." When I fell the first time at the races we all thought I had just fell because I was walking along the top of the bleachers and not where I should have been walking. When I fell in the parking lot I had on high healed sandals so what, I fell. Yes I had cut my leg and didn't feel it but, hey it didn't hurt. Who goes to the Dr because they cut their leg, unless its a huge gash that needs stitches?  but I did go to chiropractor when my fingers went numb and he said I had pinched a nerve. When I took a nose dive off the porch I went to the Dr and they said I was fine, continue with chiropractor treatments.

          Growing up in my family we didn't go to the Dr for every little thing. If you had a cold you stayed home from school & slept till you felt better then went back to school. If you had the flu as long as the fever wasn't over 101 you stayed in bed with Tylenol and slept till you felt better with no fever, If fever went over 101 you went to Dr. If you cut yourself and you couldn't see muscle or bone, you cleaned it with peroxide to get the dirt to bubble out, put neosoprine and a bandaide on it and went on with what ever you were doing. Just more carefully. If you hurt your leg or arm or what ever, can you move it? if so, it aint broke go on with what you were doin, but be careful.

            The Doctor was for something SERIOUS. So no I didn't think I needed to go to the Dr until it was REALLY SERIOUS. Even then I didn't truly believe there was something seriously wrong. I was in the prime of my life! Why should I have thought something serious was wrong with me? In my shoes most people would act the same way I did. Explain why I fell, explain why my fingers were numb, explain why I had trouble getting up from a chair. Explain why I couldn't hook my bra or zip my pants. I had a viable reason for everything and not one reason was because I had a serious illness.

Ok, tune in next time & I will either post about my family & friends or my bloodclot

Thursday, March 8, 2012

The first OMG moment

So I had a spinal tap that said I had high proteins that confirmed to the Dr that I had GBS. I had a central line put in (2 times first one didn't work) and my first oil change done. We did an oil change every other day and by the time we got to the last one I just wanted to go home. I convinced the Dr to let me out and I would come back as an outpatient for the last treatment on Monday and I would see him in his office as soon as he wanted me. (I don't remember how soon that was) So instead of going back to my home my parents wanted me to come stay with them till I was better because if something happened I would be alone if my brother was working (he was on call with the RR 24/7/365) so I slept in their room and they slept in my old room on a blow up mattress (with a slow leak). I visited with my cats and slept in "my own bed" and went back to the hospital on Monday for my last treatment and to have the line removed.

The treatment went fine and Judy called the Dr to come take the line out. I'll call her Dr Duh. Judy was packing up her things and wishing me well. She had seen many cases of GBS and seen how well I was doing and had complete confidence that I would keep getting better and have a full recovery. Dr.Duh came in and took the bandage off my line & pulled on it, HARD. Now, I was in a recliner laying back because I was nauseated from the treatment, so when she pulled on that line & it didn't come right out it HURT. (Nausea is my body's reaction to pain) so when she pulled I got more sick. She just says "Oh that's not the type of line I thought it was. You lay there and I'll check your chart and be right back." My mom was PISSED and said a few choice words to her that I won't repeat. The Dr walked to the nurses station and came back in with a kit to remove the line.

This time she successfully removed the line, she slapped a bandaid on it and left. No pressure on the wound, no instructions, nothing just left. The line was in my jugular vein and the hole was roughly the size of a quarter and she just literally stuck a bandaid on it. Judy already left so mom and I were alone in the room. The nausea finally overcame me and I started to wretch. I had sat up because I felt it coming and knew I couldn't stop it. I opened my mouth to say help and, well you get the picture. But as I heaved pressure went to my neck and the bandaid flew off my neck as blood spewed from my jugular vein. It was a seen right out of Grey's anatomy. I was covered in blood, still heaving and scared out of my mind. All I could think was, this is it, people bleed out within seconds from a jugular wound, I'm gone. I looked at mom and said "I love you".

When she saw the blood she just put her hands around my throat and started to squeeze and yelled "HELP SHE'S BLEEDING" to the nurses station, which was by the grace of God, right outside the door. 2 nurses came running, one didn't even stop for gloves, and they took mom's place and thankfully stopped the bleeding and eased my panic. They applied pressure for about 15 minutes and PROPERLY bandaged the wound. They kept me there for about an hour to be sure I was ok. I had to go home in a hospital gown because my clothes were soaked through all the way to my shoes & socks.

Looking back we probably should have caused a stir about the lack of proper care, but I was ok and I was just happy to be alive. I didn't know how much more I was in for.

Well that's all for this post. Tune in next for my blood clot story. :)

Monday, March 5, 2012

OOO the pain

It has come to my attention that I haven't given a description of the pain I experience. Mostly because...well it hurts too much.  

When your nerves demylenate (after all these years I really should learn to spell that because spell check has no suggestions) your nerves are basically fraying like an electrical cord. If they are looked at under a biopsy they tell me that they look like onion layers from being ripped apart by our own immune systems. The exposed nerve is hyper sensitive and for me the slightest touch hurts like hell.

Not everyone experiences the pain the same way. Mine burns, others stab, others say they tingle and are numb. To me the word "numb" means you don't feel any pain, numb would be a Godsend. But I get the idea of numb from the tingling because my hands & feet tingle in the beginning, then they burn. Up until two years ago when Doctors or nurses asked me to describe the pain I had trouble getting across just how badly I hurt.  

 It reminds me of when I was a teenager and didn’t care about sun damage, anyone over 30 can relate to those days, ALL day outside without any sunscreen what so ever, and hey I grew up in Florida so that was every weekend. But all day in the sun makes for a NASTY sunburn. The kind where you don’t wear a bra for a week and slather on enough Banana Boat alovera gel to make yourself look like a sunburned alien, that kind of nasty sunburn. So, imagine that sunburn…now imagine scratching your sunburn. Yeah! That’s the burn, right there. But that analogy didn’t truly express how bad it hurts when you go to a teaching hospital and the med students are younger than you and never got sunburned like that, because when you scratch a sunburn the pain stops in a few seconds but for me when I am having an exacerbation the burning is constant for WEEKS! That's right 24/7 for weeks if not months on end.

You can't sleep because, well, everything hurts from your scalp to the tips of your toes. Any kind of clothing hurts, blankets, even my super soft fuzzy cat feels like a cactus. You are so bitchy that Snow White calls and asks you to join her because you make grumpy look like happy. If you can't sleep your body can't heal. Pretty much every Doctor with any sense will tell you that. Now, will sleep stop an exacerbation? Not for me I need IVIG. But sleep is essential to getting better. Why else do you want to do nothing but sleep when you have the flu?

So I tried a new analogy. I said it was like jumping out of the frying pan & into the fire. They didn’t get my redneck slang. So I said I felt like I was being burned at the stake. That helped but not truly. Being burned at the stake implies outside where the wind may push the flames away and usually they died of smoke inhalation before the flames got them anyway.   

Now, my final analogy, and believe me it gets my point across. It feels like, what I assume being cremated alive feels like. Trapped, 5,000 degree flames surrounding your body with NOWHERE to go, no way to make it stop. Scale of 1-10, 10 being worst,100,000. I don’t always hurt that badly. Most of the time it’s just out of the frying pan & into the fire, still hurts but not as bad.  Scale 1-10, about a 4 I can handle that without any medication, be it lyrica or the likes for nerve pain or any one of the hundreds of pain medications out there. But during an exacerbation I have to have pain meds for a few days. I don't like them, I am a control freak & want complete & utter control of everything & everyone. But when I hurt that badly (and I don't go to the hospital until I absolutely can't take it anymore & that usually takes a week or two) I just want some relief. I know wanting to be pain free is unrealistic but to take it down to a manageable level helps me relax & sleep. Then we begin the IVIG & in 3 days I don't need anymore pain meds. We did try just giving me a crazy pill as I like to call them, a valum, but it didn't even relax me. They tried ambien & I still didn't sleep, they tried Valium & ambien together, still wide awake. So yeah I had to have straight up pain meds. I hated it because I was loopy, I was waiting on Mickey Mouse to call asking me to come to Disney cause I was Goofy! Sadly that isn't a joke! I asked a nurse if Mickey had called. She just looked at me like I lost my mind & I had but I just giggled & went to sleep.

Will all CIDP patients experience this extreme pain?
I don’t know. Most everyone I know has at one point.
Does it get better?
For me yes.
For everyone else? I pray to God, yes.

Am I promoting pain meds?

No, I'm just saying that for me I needed them to help me get even a few hours of relief. If you can make it without them DO IT. but if you have to take them DON'T get addicted to them. Take the smallest dose you can & get off them as soon as you can. If you already have an addictive personality talk to your doctor honestly about it & ask for their suggestions to help you cope. If the doctor isn't willing to discuss options with you get a new doctor, pronto!

Ok, night y'all. I'm going to give my burning fingers a rest.

November 22, 2012
Just a little update. Since I wrote this post I have gone into a type of "remission" it isn't a true remission because I am on IVIG every 3 weeks but I am finally burn pain free! I still have pinching in my shoulders & neck & my hips hurt but I think that may be fybromyalgia or something of the sort & not related to my CIDP.

Wednesday, February 29, 2012

The first procedure

The morning of September 9, 2005 I was taken to have a spinal tap done. a few hours later Dr Quack came in and said that I had elevated proteins in my spinal fluid which indicated that I had GBS. I asked what GBS was and he just gave me vague answers. Like your immune system is out of whack and is attacking your nervous system which is making you so weak. We are going to do plasma pheresis (or plasma exchange as some of you know it) (My family called it an oil change.) He and the nurses assured me that I would have a full recovery in 3 weeks and could go back to work in 2 weeks. I thought COOL! FULL RECOVERY in 3 weeks, awesome. I had just started to date this great guy and if there was a chance at a full recovery I had a chance at him. (wink wink)

That after noon (this was a Friday) Dr. Dork, a surgeon, came by my room to tell me that he would be putting a central line in my neck in the morning (Saturday) for the plasma pheresis team to run the treatment. He said he would be knocking me out and placing the tubing into my jugular vein and then feeding it down, to God knows where because he kind of lost me. But my mom and dad were there and listening so I just figured I'd ask them what he said. But before he left he laughed and said if we needed him he would be at the holiday inn up the road learning the procedure before he did it on me in the morning for the first time and that he promised he wouldn't drink...much.

Now don't get me wrong I love when a doctor can have a sense of humor but there is a time and place for all that. That was not the time nor the place! My dad was PISSED to say the least. But Dr Dork was the only surgeon on call that weekend and my treatment needed to get started ASAP.
So the next morning I was taken down to the OR and one of my BFF's was there, Laura, or as I call her Peach. She was my rock. I was scared I didn't know what to expect except that when I woke up I would look like a monster from Buffy, with a tube sticking out of my neck! But it was comforting that Peach was the last person I saw as I was wheeled into the OR. My parents had planned on being there but the surgery got moved up by 30 minutes but they were there when I came out. All 3 of them beaming smiles at me with tears in their eyes. But that could have been the drugs I was on!

Dr. Dork came by my room about an hour later and assured us that all went perfectly and that the line was functioning perfectly and that Florida Blood Services would be in an a few hours to do  the first procedure. We all thanked him and he left us to visit. All the equipment had arrived from FBS and was packed into my tiny room and my dad is uncomfortable with hospitals and decided to go get a bite to eat or something. Mom and Peach stayed with me. A few hours later the nurse from FBS came in and explained the procedure to us.

They hook 2 lines into your tubing and one line suctions blood out of your body and runs it through a centrifuge that separates the components of your blood and removes the antibodies that are reacting and causing the problems. Then they mix Albumin (a blood product) back with the blood they took out and replace it back into your body. (this is why we called it an "oil change") We were starting with 5 bottles of albumin per treatment and the treatments would be every other day for 8 days. She said that she had seen many cases of GBS and they all made full recoveries with in a few weeks to a few months. I was VERY happy with that. So as she got me hooked up to the machine she noticed that the line Dr Dork had put in was not the typical line that was used for the procedure! (He wasn't kidding he didn't know what he was doing) But I think that nurse's name was Kathy and she tried her best to get it working but when she turned the machine on it did not work. It wasn't the machine it was the line he put in. So she had to get orders for him to replace the line and then come back the next day to try again. I was disappointed that we couldn't get it started that meant more days in the hospital for me.

The next morning Peach was again the last person  I saw when I went down to the OR and mom and dad were there when I woke up. I remember asking the nurse why my throat hurt and she nonchalantly says "oh, you had trouble breathing so we had to intibate you." Like it was nothing. But apparently it was something because they kept a close watch on me for hours after that but  I never found out what happened, which is probably a good thing. The next nurse from FBS was named Judy, she was awesome (but I'll get into that in a later post) She got me hooked up and started the machine and it ran with no problems...except that it kept throwing blood clots. It wasn't the machine it was me. From the added stress of a foreign body in an already immuno compromised body is pretty much a guarantee that blood is going to form around that foreign body and cause clots. She mentioned it to Dr Quack when he stopped by after church that afternoon and told him I should be on lovonox shots during the treatments. He disagreed and said that the treatment actually removed my clotting factors and that I should be watched for bleeding risks. She showed him the clots in the bag that collected the antibodies that were pulled out of my body but he was not concerned. She was livid because she had been doing these treatments for over 20 years and had seen this kind of thing before but he was the Dr. and she was the nurse so who do you think won that argument?

Let me tell ya, If you ever have to have plasma exchange, stock up on hard candy. The albumin tastes horrible going through a central line and you taste it the entire time the machine is running. I ate lifesavers by the bag!

Ok y'all, time for me to get some sleep, I didn't sleep well last night and I was up early again today for my IVIG treatment then my Dr apointment after that and have another IV early tomorrow.

Monday, February 27, 2012


Before I get into the diagnosis I MUST tell you about the funniest time I fell, it wasn't funny at the time but looking back it had to be spectacular.

I had resorted to taking my book and purse to my car in the morning and going back into the house for my lunch and drink because it was too much to carry them all at the same time. So I was going back up the stairs of the deck (which had no rails) and my legs gave way and I took a nose dive off the edge of the deck and did a face plant into the dirt! I had on a skirt which was now over my head, my underwear got caught on the box hedge, my shirt had slid up over my chest and my face was about 6 inches from a fire ant hill! OMG what a sight I had to have been. I rolled over, adjusted my clothes and laid on the ground fuming, I knew I couldn't get up and I knew nothing was broken. No one was home and my cell phone was in my purse in the car 50 feet from me. Luckily the man who lived across the street was out walking his dog and found me on the ground. He asked me if he could help but, he was disabled and I knew he couldn't help get me up, I had no strength to help I asked him to get my phone out of my purse so I could call someone to help. He was nice enough to stay with me until help could get there and also to NEVER MENTION it again! He passed away 2 years ago, God bless him, he was a kind man.

So on to my diagnosis.
I had gone to the ER and been told to go to chiropractor. (been there done that with no improvement) I called my primary and he was booked but I could see his nurse practitioner. I went in that afternoon. I told her my story, she checked my reflexes and I had none, the look on her face kinda worried me but not real bad. She left the room and came back in with my primary who asked some questions and checked my reflexes again, he hit me hard enough to bruise me, still nothing. He told me he wanted me to have an MRI and see a neurologist. I asked him what he thought it was and he told me he thought it was either MS or Guillian Barre Syndrome. I had heard of MS and knew I didn't want it to be that but I had no idea what GBS was. He told me we would cross that bridge when we got there. So they made the MRI appointment for the next day and the neurologist appointment for the day after that. I wasn't happy with the choice of neurologist but he was the only one who could work me in. (I'll just call him Dr. Quack)

I had my MRI and went to see Dr. Quack. He listened to me and immediately ruled out MS. He told me it was GBS but wanted a "lumbar puncture" to be sure. (lumbar puncture = nice way to say spinal tap) He admitted me to the hospital that day and the spinal tap was scheduled for the next day. GBS still wasn't really explained to me just that we had caught it early enough and that I would make a full recovery. I was so thankful and weak and tired I just didn't question anymore.

The next morning I called my brother and asked him to bring me some chapstick before he went into work. He got there just as I was being wheeled down for the spinal tap. He handed me the chapstick and I COULD NOT get the cap off. I saw my brother's heart break at that moment. I've always looked up to him and that's when how sick I was truly started to sink in. Also how much he loved me hit me and I started to cry. He took the cap off and put the chapstick on for me then gave me a hug and kiss, told me he loved me and left for work. He called our mom and told her how pitiful I was and made sure she was on her way to be with me.

Ok, pain set in again, got to stop here for now.