Tuesday, May 14, 2013

Mini Miracles: How I've recovered from CIDP

I'm in the process of becoming an on-call person for the GBS/CIDP foundation, meaning that I'll have the opportunity to talk with people that are suffering from the illnesses I had. I'm thrilled! I can't wait to help others the same way this great organization has helped me.

I thought it would be a good time to look back on how far I've come and share the things that have aided my recovery.

1) IVIG Treatments: Called liquid gold, this treatment costs roughly $10,000 a bottle. I received a 5-day treatment once a month over six months. It's administered through an IV over 6 - 8 hours. This was a big help in the beginning. I heard in a recent CIDP lecture that it only works on about half of CIDP patients. Here's to being in the lucky half.
What $10K in liquid form looks like

2) Plasmapharesis: It requires either a port surgically installed directly into an artery, or two, good strong veins where they will remove your blood, filter out the plasma and replace it with new plasma/white blood cells that are not attacking you. They tried this treatment on me, but couldn't get enough flow through my veins and I declined the port. Reportedly though, this is effective in all GBS/IVIG patients. This was experimental when I was 10 and had GBS. My doctor didn't give it to me then.

3) Prednizone: This is a steroid treatment taken via a daily prescription. I did this for 3 or 4 months. It did help, but I couldn't wait to get off it. I had trouble sleeping, was irritable and gained significant weight. Boo.  Also we wanted more children, and there is some risk associated with this drug. I was well enough that I didn't think I needed it anymore.

4) Physical Therapy: I had drop foot in my right foot, meaning it was paralyzed and wouldn't lift up. I had to do 6 months of therapy with an adjustable brace to overcome it.

5) Better Rest: Rest is SOOOO important for a GBS/CIDP patient. My husband and I researched beds and pillows until we found the best possible combination for the absolute best rest. We did end up choosing a Sleep Number bed and a contoured gel pillow. This is not an endorsement of either, however. Sleep is extremely subjective and it's crucial that you do the research and find the best possible combination for you.

6) Alkaline Water: I discovered Kangen Water through my BIL. It's a machine that makes alkaline, anti-oxidant water that has anti-inflammatory properties. After I started drinking the water, I found that I slept better and had improved feeling in my limbs. In general however, drinking lots of water helps your body do what it does best, correct itself. So stay VERY hydrated, it helps.

7) Anti-inflammatory Diet: Staying away from sugar and eating whole foods, with lots of vegetables and minimal processed foods also helps. There are several sites with great recommendations of this subject.  Here's one: http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet

8) Yoga: When I finished my physical therapy, I thought I might try yoga. My work offers it for free two times a week in our office, so I decided to start there. The stretching and strength exercises have been incredible for me. In fact, one night after Yoga, I noticed that I could I could bring my formerly paralyzed right pinky finger in and lay it flat. I haven't been able to do that for years!!!! In this picture you can see my left pinky finger is still bent and somewhat paralyzed. That's how my right one was. Amazing!!! Make sure it's a fairly gentle yoga class until you're ready for more. I was told to look for Restorative Yoga. 
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9) Peace: I've made a study of peace and how to have more of it in my life. I've turned to my scriptures and read some books on the subject. I've really tried to gain perspective when something happens, so I don't get so upset over little things. Still working on that last part.

Happy Thought: Though I still have to watch my stress levels and get plenty of rest, I really do feel like I'm getting better all the time and I'm thrilled with how far I've come. I'm also grateful to an incredible family (mostly my sweet husband) for their support and my Father in heaven for His.