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Wednesday, August 14, 2013

Highs & lows

SO much has happened since my last post, well this year actually and a lot of it is CIDP related so I should have been blogging about it but, well, I get distracted easily. To begin I've pretty much lost one of my best friends over something stupid. I'll just say I feel that she chose a blood feud over her friendship with me, she probably thinks I chose to be friends with her sworn enemy rather than her. Honestly, I needed help with something & went to the person I knew could help me. Plain & simple. So moving on. (sadly, the financial problems are because of CIDP, so you could say CIDP has caused me to lose ANOTHER friend...)

I'll list my problems in my life with CIDP then I'll list the good things so I end on a happy note. I lost my favorite nurse last month. Not because she moved, retired, pissed me off or anything. I lost her because another person had a vendetta against her & moved heaven & hell to get her fired! I'm not going into specifics, lets just say the people involved NOW know EXACTLY how I feel about the situation. It won't get my Donna back but it keeps the evil wench out of my medical needs.

Next, I am apparently allergic to adhesive & pretty much every brand of tagaderm in existence. Tagaderm, not sure if I'm spelling that right, is the bandage for lack of a better word that goes over iv's & central lines & whatnot to keep the needle in place & germs out. So anyway, the pharmacy I use has known about this problem for at least 1.5 years but they haven't done anything about it. Oh well a little here & there but no full blown lets make Cheryl more comfortable even if it costs us a few extra $ she is getting IVIG every 3 weeks so she shouldn't be miserable, kind of way. More like "yeah, I looked, I didn't see anything different in the system" kind of way. So one of my nurses has gone out of her way to find some that don't make me itch. She was doing this because she didn't want to see me miserable & I love her for it. But she can't get them anymore & my last infusion was miserable. We've tried everything. We make sure the area is completely dry before putting the tagaderm on. We have used skin prep & not used skin prep, same results. We have used alcohol swabs to clean the area & we have used badidine (again spelling) no difference. I have a medi port in my chest & I have 3 DAYS of infusions every 3 weeks not 3 HOURS so a piece of gauze & paper tape or a stocking won't work. I start itching about 6 - 8 hours after the tagaderm hits my skin. Now some of you will say its the IVIG making you itch, it's not. recently I burned my hand making cookies & the band aid itched so its not the IVIG. Anyway, this last infusion I started itching about 6 hours in & during the day I can distract myself from itching mostly but I itch in my sleep & don't know I'm doing it. I scratched myself & bled & that was only the first night! When we took the tagaderm off at the end of 3 days I had welts all around the edges & they continued to itch even after putting cortisone cream or benadryl cream on them. They even started to get infected. Luckily it didn't get a full blown infection.

So I snapped & told the pharmacy that if they didn't get what I need I will find someone who will. And a few other things but I'll be a good girl & not post them. I found a link to the exact brand & type of tagaderm that they can order from in all of 5 minutes & they couldn't find anything in nearly 2 years! But as my dad pointed out, I WANTED to find them, they were just looking to see IF they could find them. Everyone says you have to be your own advocate in the health care system, well I finally realized all I'm doing is stressing myself out. So I decided to let God be my advocate, something I should have done in the first place seeing as I am a believer. In my last conversation with the pharmacy I told them that God is now my advocate & that they will do or not do whatever they are or aren't going to do & I'll do what I have to do. So, we'll see, but I do feel better after giving it up to a higher power!

Next problem, I've been having severe pain in my hips. To the point that I can't sit more than 20-30 minutes at a time, I can't lay down more than a couple of hours or stand & or walk for very long without my hips hurting. It's gotten to the point that my entire leg goes numb. I asked my neuro if it could be CIDP related & she didn't thing so. She wanted me to see my primary Dr. So I did. She examined me & listened to me & listened to my history & family history and said that even though I'm young that the pain I'm describing is typical osteoporosis and that because I had the depo shot for a few years & I had steroids & cyclosporine & was wheel chair bound for a few years & my grandmother had it that it could be starting early. She had me have an xray & bone scan done & xray is fine but bone scan says that I'm just below normal for my age, height & weight. They called it osteo pina, something like that. Early, early stages. She wants me to take additional calcium & vitamin D & walk an additional 30minutes a day. Well, its too hot in Florida in the summer, (ok, most of the year) for a person with CIDP to walk more than necessary so I joined a gym.

Which brings me to the happy part. I decided that I don't want to be in pain & hunched over like my grandmother was at the end. CIDP is enough pain on its own! I hate pain meds unless absolutely necessary & then only for a few days till something else works. So I figured I could walk on a treadmill a few times a week for as long as I can & build up from there. I went to my local you fit gym. For $20 a month I can go as many times as I want & I can bring 1 guest as many times as I want. So me & mom go, she's kicking my butt. Watching her tires me out! But I have been walking on the treadmill & using weight machines. Not on the same day, that would tire me out too much. One day walk one day weights. I even walked a mile! only once, I pushed myself. My feet burned for a few days after & were numb for a few hours & I was really tired for a couple of days so I don't know if I'll do that again. But knowing that in a pinch, if I have to I can.
And the best part.....wait for it.....the pain is getting BETTER! I still hurt but it's getting better. When I use the weights I target the muscles surrounding my hips to strengthen them. I can only do about 15 reps but its more than I could do when I started.

So, some crummy things but some happy. I hope y'all are doing well. Till next time, believe in the magic of life.



  1. I am sorry to hear about all your troubles I am glad it is getting a little better. I lived in Texas all my life and had been to so many dr's that they were making me feel like i was a drug seeker and would never really do a complete exam as they should.
    I moved to Virginia in Dec and of course had to get a primary phys to get my medicine transferred and refilled here. He said " oh I can't fill those one or this one. Long story short I referred to many Dr's which now I realize is was the best ever. The 1st dr he referred me to was the one that did an actual physical exam and range of motion & had me have some cat scans and MRI's. The next time I went to him he did the nerve conduction & EMG test, Thats when he gave me the bad news of my dx and had me a direct admit into the hosp. I spent 1 week there and had my 1st IVIG treatment and since I was discharged I have had 2 sessions . I am just waiting for my neurologist and the other dr from from UVA to decide how often and what routine to be on. The Dr that dx me wants me to do phys therapy but it's hard when I have to ask my husband for money and sometimes he wouldn't even give it to me for dr appt until I told him they new he was doing this. He thinks I am faking for attention because our washer and dryer are downstairs in the basement and he was even in the room when the dr said that I was not allowed to go up and down them stairs with a laundry basket nut my husband heres what he wants to . I just need my own money and checking account since he canceled me off his too. I actually had a job for 1 day and 1/2 then they let me go saying I couldn't carry out my job description which I understand being in medical field, They don't someone shaking while I draw their blood or give injections. But I am better now that I am on a ton of
    meds. I actually replied about the pain in your hips because I have the same issue along with pain from upper shoulder to shoulder. So I think I will try what you are doing in moderation and see if that helps. It is just hard being so far away from my mom and friends. I have his family and they are good but it is nothing like having momma around. I jst need a job and my own money and make new friends also. I was happy to find your blog. Thanks for listening
    Kim Lafon

  2. Hi Kim,
    I'm sorry to hear you also have CIDP, it sucks, but it could be so much worse. I'm also sorry to hear that you seem to kind of have a jerk of a husband. (luckily I didn't marry my jerk!) Maybe have him read what I've been through & he'll see that it's not just in your head & you aren't begging for attention. At one point some of the crummy doctors told me the same thing. I told them if I wanted attention I'd have gotten knocked up! That a wheelchair completely dependent on others for all my needs was not my idea of fun.

    My pain was getting better till cooler weather hit. Now Its back in full force but I started physical therapy last week & am approved for 8 visits. I'm hoping that when 2014 hits I'll be approved for more & can finally get relief. On the bright side, Florida isn't real cold for long & that's only in January.

    Anyway, try to keep sane & listen to your body, it knows way more than anyone else does.
    And as always, believe in the magic of life.