Wednesday, February 25, 2009

Living with a rare illnes

On February 8, 2007, at the age of 37, I was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy. It’s a rare autoimmune disorder where the immune system attacks and damages the peripheral nerves thus causing leg and arm paralysis, excessive weakness and difficulty in breathing. Right now there is no cure. One can only manage the symptoms.

By the time I was diagnosed, I was pretty much paralyzed from my chest down to my feet. My feet felt like lead and my legs like jello. I couldn’t even raise my arms to comb my hair. Breathing was also difficult, like there was a constant weight on my chest. My doctor immediately put me on a 5-day infusion of immuno gamma globulin (IGG). It was meant to tie-up my immune system and stop it from further damaging my peripheral nerves. Then he prescribed me high doses of steroids to help heal my damaged nerves.

Suddenly I went from an active mother of 4 to like a toddler who couldn’t walk. I would crawl, pull myself up and cruise just to get to the bathroom. One time, I fell and passed out during the process. Before I passed out, I thought, “Wow, this is the end of me. All these years, I’ve been working hard to have a good life. None of it matters now.” Then, I said a short prayer and thank The Lord.

Obviously, I did not die that night (unless you’d believe that I’m telling this story from the after life). My husband just told me to stop going to the bathroom on my own and then he got me a walker.

A few weeks after being diagnosed, I was able to walk again without the aid of a walker. Unfortunately, I didn’t realize that was just the beginning of my battle.

To date, it’s still a roller coaster ride for me. Every 3 weeks I need to get an infusion of IGG. I get hooked up to an IV for 2 days at 6 hours per day. The medication is harsh on the veins and my nurse is running out of places to poke me. Eventually, I might need to have a permanent port to receive my medication.

Recovering after an infusion is also difficult. It causes nausea, headaches and general weakness. Unfortunately, I don’t really have much choice. If I don’t get my infusion, I won’t be able to walk and worse – I won’t be able to breathe!

I also take steroids which cause a host of other health problems such as diabetes, osteoporosis, liver damage, hallucination, etc.

Amidst all these things, I managed to maintain a positive and cheerful attitude. My doctor noticed that I don’t complain a lot. They’d prick, poke and electroshock me but they don’t hear a thing. Unfortunately, that got me in trouble because I delayed seeking medical attention despite my discomfort.

I view this as a challenge to be hurdled. A reminder to be thankful with what I have before I lose them. I always think about those who do not have access to good healthcare and hope there is something I can do to help. My insurance company pays $11,000 for my medical bills every 3 weeks. I am still able to work although sometimes from home. Had it not been for my job and the good insurance coverage it provides, there’s no way I would be able to get treatment.

In between my infusions, I look and feel just like a regular person. In fact, I thought I was healthy enough that I went back to school last semester and started working on my Ph.D. Unfortunately this semester, I am having so much trouble again health-wise that I decided not to register.

It is a rare illness and I always consider myself a strong person who can weather life’s difficulties. A rare illness and a strong-willed person. The Lord, indeed, works in mysterious ways.

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