We were packing our moving truck to head from Federal Way, WA back to California where I was raised, when all of a sudden I found I had the flu. The kind were it is coming out both ends. It was bad.
On 12/23/2000 while walking the neighborhood looking at Christmas lights, I started noticing I was having a hard time with my ankles. I felt weird. As the weeks progressed....so did my symptoms. by 12/30/00 I has severe back pain, my legs were getting weak, I heard synthesized sounds when cars drove by, every sound was extreme, my hands and feet were in extreme pain as well. It felt like dry ice was burning me from the inside out. Every time I touched something I felt like I was being stung by millions of bees, and I was having a hard time walking and lifting my arms, although I felt like I had to constantly go, it was hard to go to the bathroom. I would have gone to the doctor, but did not have medical insurance.
On Jan. 2, 2001.... the day I was to start my new job, I got in the shower and could not lift my arms to wash my hair. This was at 8:30 am. I got out and yelled to my boyfriend to get me to the hospital ASAP. By the time he got me to the hospital, my parents were there waiting. I was rushed back where they did an array of tests one being a lumbar….spinal. By 10:30 am I was completely paralyzed. My spinal came back with high protein. I had Guillain-Barre Syndrome. No one in my family had ever heard of it.
I was in the hospital completely paralyzed for 8 days. I had IVIg for 5 days & a plasma exchange. I had a catheter, and I was on oxygen. I had a hard time swallowing, my speech was gone, my breathing was getting worse. There was talk of me being in a rehab facility for 4 months, they were going to put a shunt in my chest ….it was scary.
After 8 days of being in the hospital, I was kicked out due to no medical insurance. I did not qualify for state aid because I was not a legal resident of California yet. I was sent home with month's worth of in home nurse's visits.
My parents took my children in (for a year), bought me a used wheelchair, and a walker, and they started making phone calls to see if they could get me help. Finally, after 1 week of being in extreme pain, and being couch ridden, my dad took me back to the hospital. A woman came in the room with medi-cal papers to fill out so I could emergency state ins.
But....I was sent back home.
Long story short, by Feb, 2001, I had a nurse come to my home to help me 3x a week. No rehab, and no shunt. I started to progress, and regained my walking ability on my own by April. In June of 2001, I regressed. I went to see a neurologist. He did a bunch more testing…. he concluded I has CIDP.
I was finally approved in 2002 for physical, speech and occupational therapy for my GBS (How's that for state insurance? It had already been a year and my GBS was now CIDP…MORANS!).
But, because my parents had my children living with them, I lost my medical insurance through the state, so I only went to physical therapy 1 time. And before my ins. stopped, my neurologist put me on Neurontin, which I quickly stopped due to extreme side effects. Life sucked!! I started to self medicate with alcohol and drugs. Of course they numbed my pain, gave me energy, and helped me, but they also started me down a path of self destruction. It took me 2.5 years to figure out that numbing myself was making my CIDP worse.
Now, 11 years later…..although I have amazing medical insurance these days….I refuse to be treated for something that has no cure. Why? Maybe it is a sense of false hope combined with not wanting to put more drugs into my system,
Yes there are things to help ease the process out there, but from my experience, they only work for awhile. I have learned to deal with the pain on my own, and take each day as it comes. I do take Tylenol 3 for extreme pain, that my doc prescribed, but will not take anything stronger. When I have "Lay Low Days" (like I did this weekend, and this morning) I just kick back and enjoy life. Warm showers work, staying covered with socks, sweat pants, hoodies, and sometimes gloves help. I have learned to become resilient to the pain and have concocted my own coping strategies that work for me.
Because of my bad experience with the doctors in San Diego (I moved back up to the Pacific NW in late 2003) I am afraid of being shut down again. I told myself if things become extreme, I would head to the doctor right away. There have been some close calls, but I just wait them out.
On a daily basis since 2000, I do have the vibration sensations, burning feeling, pins and needles thing going on in my right foot, hand, and face. This past weekend it is my both sides of my body, with all of the above, and weakness in my legs and arms, my speech has been off, and I have had the feeling of urgency to use the bathroom, yet nothing happens. Sleeping has been a pain in my butt, because of the pain.
With the pain and symptoms arising again this weekend, I felt the need to reach out and find people like me. That is when I came across this website. After reading about everyone's journey's, their ordeals, successes, or lack thereof with various treatments, it seems as if the medical community has come a bit farther in understanding CIDP since I was first diagnosed in 2001. With that, I have called my doctor, and asked to be seen so I can weigh my options once again. :)
The overwhelmed feeling comes and goes for me. I have learned to not let it take over , like I did in my past. I took up photography to redirect my thoughts. I look at life as a gift, and am very thankful that I am able to be here...right now....sharing my story with you, as well as learn from others about their experience.
Anyway.....If there are typos in this, I am sorry. Please read between the lines. I had to hurry. I have to go to work for a few hours this morning.