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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.