One step forward (NEW CHAIR), one step back (SHINGLES)

    • Anonymous
      July 14, 2008 at 5:26 pm

      I got some good news, then a week later some bad news.
      The good news–I finally got me electric wheelchair/scooter, or whatever you want to call it. It took over TWO YEARS of red-tape, where first my insurance company delclined it, and my team of doctors had to write letters, and they did MRI’s of my arms, showing declining usage of my arms. Finally after over one year, my insurance company decided they would cover it. But it turned out they only cover 50%, which left $2600.00 for me to cover…NOT!!! So, then we had to start all over again, with my secondary insurance, Medi-Cal, to pay for the rest of the 50%. So, after another year went by, I FINALLY GOT MY CHAIR. Oh, and it couldn’t have come sooner, since it has been so difficult on my arms, pushing the manual wheelchair.
      I have read some of the threads on people who have the chairs.

      Then the bad news…For about a week, my upper diaphragm felt as if someone was standing on my chest–very painful, with sometime a stabbing pain. Then, last week, a rash started on my back. My mate insisted I go to my Primary Care Doctor, which he took me right away thinking it was something with my heart. He saw me two days after the rash started, luckily. He took one look at the rash, and told me I had SHINGLES.
      GREAT–just what I needed on top of everything else. He immediately put me on an anti-viral med, Acyclovir, to be taken 5 times daily. And, since I have a poor prognosis with the CIDP, was willing to write a script for any kind of pain pill I wanted, but told him the Vicodin was working okay, (I have to take it every 4 hours since the shingles are very painful).
      Today is a week since the rash started. I guess the pills are working, since it slowed the spread of the rash. Luckily, I don’t have much feeling on the skin from the CIDP, so it isn’t itchy for me. It is just very painful in the morning when I get up, and don’t have any pain pills in me yet.
      My doctor said that anyone who gets the chicken pox, has it lying dormant in their body. Because my immune system is so low due to the Chemotherapy I am on, it came out of it’s dormancy, and came out as shingles. He told me my body is open to any kind of oportunistic disease, with my auto-immune system being down.
      Has anyone else here had the shingles? How long did they last for?
      My doctor gave me the pills for 10days. From what I have read, it can last 2 weeks to over a month, if not longer. Should I be getting more pills?
      Let me know-it will help….THANX, KEDASO

    • Anonymous
      July 14, 2008 at 6:20 pm

      My mom got shingles quite a bit and yes get more pills!

      Ask if you can have extras in case you get another outbreak…mom always got hers on the weekend and of course no doctor to prescribe the medication.

      I know you have to start the pills fairly soon after the outbreak.

      Rhonda from Canada

    • Anonymous
      July 16, 2008 at 11:52 am

      Congratulations on the new chair 😀 Sorry about the shingles 🙁

    • Anonymous
      July 16, 2008 at 1:18 pm

      I bet you like the new freedom that the powerchair is giving you. I felt that way when I got mine five month ago. But it was scary at first and I had it at the slowest speed and still ran into walls. Now I zoom around pretty fast.

      Sorry about the shingles. Yuk. My immune system has been down since last September, no B cells due to the Rituxan treatment. So far I have had no infections to speak of. I guess I’m lucky.

    • Anonymous
      July 16, 2008 at 1:25 pm

      Here is a link to a website that is very helpful getting people power chairs. They will work with your insurance for you.


    • July 16, 2008 at 3:26 pm

      I had shingles about a year before the CIDP came to visit. Back then there were no pills and my episode lasted about 3 weeks. Know how painful they can be. Good luck and congrats on the chair. They (the chair) sure makes like easier!