Discouraged In The Waiting Room

Well, in Chicagoland, hayfever season is in full swing. I know because I have used a lot of tissues the last couple weeks and feel pretty miserable. I am convinced that I am immune to allergy medicine! If it is helping at all, I would hate to think how bad I would feel without it, but I digress.

My home has become my waiting room. I have been waiting on emails and phone calls from my oncologist, neurologist, and insurance company. Since we all decided to do another 6 month trial of the Rituximab, I have been doing a lot of waiting, and still no insurance approval. I am not the best at waiting! I prefer the "let's get this done" method. Please continue to pray for the insurance company to get this approved so I can get started.

I am hoping that these infusions slow the progression of the neurological disease, and my most recent diagnosis. (They still aren't sure exactly what it is, but have officially been calling it CIDP). There has been a LOT of confusion with family and friends since I have an oncologist and am doing chemotherapy. There is a long list of other questions too:

• Why does your neck hurt from a neurological problem in your legs?
• Does the leg brace fix the problem?
• Am I getting better?

I can't list or answer every question that I have been asked, heck even the doctors can't answer many of them, but I decided to give a rundown of the main medical issues I face. I will include some links if you want to know more about any of them.

In 1998, I started having back and joint pain. I lost a lot of weight and was fatigued constantly. The doctors knew right away that it was an autoimmune disease, but struggled to decide the exact one. The truth is, over time, I developed more symptoms and had more testing which helped with the diagnosis.

1. Spondyloarthropathy - This inflammatory arthritis has been consistent since 1998. I now have bone spurring and 8 herniated discs, widespread joint pain, and occasional swelling, and fatigue. Combine that with being rear-ended 3 times, and I have constant neck and back pain which frequently triggers headaches and causes great difficulty sleeping. There have been many procedures, surgeries and DMARDS over the years to help as much as possible.
2. Plexiform Neurofibroma - In 2009, after many years of left leg numbness, loss of reflexes and knee buckling, Northwestern docs found a 5.5" long nerve sheath tumor growing on my femoral nerve. They removed 7" of the femoral nerve to get clear margins, and after 2 failed attempts to reconstruct the nerve, my left leg is partially paralyzed. I have no quadriceps function at all, so no running, kicking, squatting, standing up, etc with that leg ever.
3. Now, this new "mystery" autoimmune peripheral neuropathy, that is similar to CIDP (and they have begun calling it this just to make things a little easier). This started after my partial knee replacement, and I first saw a neurologist in 2012. This is the disease that the chemo is currently for. The disease has caused me to lose all reflexes in both legs, along with weakness, numbness, nerve pain, leg cramps and fasciculations. This also makes sleeping difficult, and frequently painful due to cramps waking me up several times each night.

So, the second item on the list (the nerve tumor) was removed. It was not cancer. It did leave my left leg permanently partially paralyzed. The leg brace I wear simply helps to catch me when I fall, and I do fall. I fell once without it and it is hard to describe, but I go from standing to flat down on my knees, leg buckled underneath me, in a split second. Without the brace, I tore my quadriceps muscle and fractured my kneecap. The brace "catches" at about a 90 degree bend. When I fall it helps protect my knee and leg.....it does not stop me from falling. It doesn't help me walk, and my leg will never get better.

The first and third items are both autoimmune diseases. In any autoimmune disease, your immune system gets stuck in high gear. Normally, if a "foreign body" (think virus or bacteria) enters your body, the immune system recognizes the intruder and sends fighters out to isolate and eliminate them. Autoimmune diseases happen when that system goes haywire. My immune system sees my spine and joints (#1 on the list), and my nervous system (#3 on the list) as foreign invaders that must be eliminated. Basically my immune system is destroying itself (and me) trying to fight imaginary bad guys. 

Using immunosuppressive medicines like chemotherapy, just keeps my immune system so weak that it cannot destroy my body too quickly. It is not a cure. While remission can happen, it is rare, and most likely I will not "get better". 

With all that said, I get to the discouraged part of my blog post title. Days seem to be getting harder and harder lately. I rarely leave the house, although my wheelchair has helped me to have an easier time getting to places when I need too. With neck and back pain, headaches and joint pain a daily issue, you can imagine that just getting my chair in and out of the car, driving, cleaning house or even showering can be challenging and increase my pain level. The lack of balance, and increasing weakness have made some thing impossible and other tasks increase the risk of falling. (I seem to be covered in bruises lately).

Having a paralyzed left leg makes my right leg have to do all the climbing and weight bearing. Lastly, now add a disease, causing both legs to be completely numb and weak, and I think you could see how discouraging and difficult it can be. The rough mornings with allergies the last couple of days have just "added insult to injury" and tipped the scales to my breaking point. Every once in awhile there are tears, and it is the time once again. This is all a bit overwhelming. At times this all seems impossible. I am a worrier by nature too, so knowing the upcoming expenses involved because of all of this, stresses me out too.

I saw this and was reminded, when I feel like I am at the end of my rope, when I feel isolated and discouraged, when I feel weak and like I can't go on, I know that He is stronger. Prayers are very much appreciated, but by the grace of God I have been able to have an occasion, brief pity party, and then get back to doing what He has called me to do - to suffer well - to glorify Him and enjoy Him forever.

I pray you know the One who sustains me, for He will sustain you too.

Until Next Time

~Shari