Friday, April 24, 2015

The Sea Leads to Many Places - Health Update

Sitting at her vanity, a young woman who was bound to wed a man she did not love cried silent tears as her maid gently combed through her hair. The young woman looked up to her caretaker and expressed that she felt like she was being swept away by the sea, her life caught in a current that she did not want to follow. The kind maid looked down at the young woman and said, "The sea leads to many places dearie. Maybe you'll land somewhere better." Times in my life I feel I relate so well to this young woman. My life is an aggressive, and powerful current. Trying with all my might to kick and swim away is useless, it just carries me like a helpless child. I am lost with no direction, and I have no choice but to let the current take me, hoping I land somewhere better. When you become seriously ill your life is no longer governed by desire, but a force out of your control. You become a slave to something you never sworn your allegiance to; no longer making decisions for yourself. You have no choice but to attempt to endure, and pray for an outcome in your favor. Everything you planned for your life now washed away with the tide.

Even though I prepare myself mentally for realistic news, it still seems to shock my system when I see a test result come out so poor. Those numbers on a page cant possibly be me. You think you can prepare yourself for your down fall, but reality is it still stings. The last month my doctors have been keeping a very close eye on my Respiratory System. While a typical MCTD or Scleroderma patient receives a Pulmonary Function Test every six months to a year, I am currently receiving them every four weeks. My results yesterday were so poor that my Pulmonoslogist actually had me re preform the test immediately in his office after reading the documentation. I have over the last few months found myself unable to expel forceful volumes for sometime now. My last PFT four weeks ago showed that my respiratory muscles were functioning at a mere 34% while my current PFT shows them now functioning at 18%. That is quite a considerable drop in four short weeks. Due to this inability to move my muscles my Forced Expiratory Flow has also dropped significantly 85% to 55%. The Forced Vital Capacity of my lungs however is still at a high enough rate to give me adequate oxygen, I just am unable to expel anything should I come down with a cold. That puts me in a very dangerous predicament that required immediate attention; the respiratory muscles are vital to your lungs function. We briefly spoke about getting fit for a BiPap in the near feature so I do not suffocate in my sleep. The quick progression of these recent respiratory issues lead my doctor to believe I have a underlying severe Neuro-Muscular disease that we have failed to diagnoses.
I seem to have developed serve photosensitivity, accompanied by some Central Nervous System issue within the last month as well. My entire block of appointments yesterday had to be held in the dark as I now have such a serve reaction to lighting. I have had to remove lights from my home, and am even unable to shop at specific grocers due to their lighting choices. This issue is becoming extremely debilitating and leaving me almost completely home bound. Accompanied by this odd new photosensitivity I am experience cognitive difficulties, what many like to call "brain fog." It has gotten to the point where I can no longer remember words, jumble my sentences, and seem to be having quite serious issues with memory. Alongside by the brain fog comes debilitating head pain. Head pain that does not follow a pattern of migraine, tension, pressure, or cluster headaches. This pain is unlike anything I have felt, but is similar to the pain of a leaky spinal type, or meningitis; both things I wished to never again endure after my hospital stay in December. This head pain feels much like heavy lead is slowly being poured into the back of my skull, then forcefully slammed against the wall repeatedly. They have become so recurrent and intense that I have landed in the ER multiple times this month due to a lack of sleep and sheer unimaginable pain; unfortunately this headache is completely resistant to any painkiller. This leads my doctors to believe it is a malfunction of my nervous system causing the cranial pain and cognitive dysfunction. Last time I had to attend the ER they were at such a loss the doctor make the executive decision to just sedate me with Fentanyl so I could rest. Needless to say, no one should live like this.

After consulting with my doctor, and a mess of other physicians for almost a full 5 hours yesterday we decided that it is time to take more aggressive measures with my illness. Many of the medications and treatments I am currently on are the top of the line medications... thought to be "the last resort." He clearly stated that we need to look higher than that, and it may be time to move forward with more experimental treatment options. He explained to me that he will be calling a "conference" with the other physicians on my team as soon as possible to discuses where to go from here. He is hopeful that between the many brilliant minds they can create a new plan to suppress this disease before it takes anymore from my already fragile body. While I cannot disclose exactly what treatments they are considering as I do not know them yet, he did mention a few devices such as pacemakers to assist function, aggressive chemotherapy, or possibly even a Stem Call Transplant down the road. As of now I must play the waiting game as my physicians meet to talk about my future.


  1. We love you Chanel! Always praying for you and Noel.

  2. Hi Chanel. I just started reading your blog after seeing an exerpt on Facebook. I don't know you or your history. I am very glad you are writing and giving voice and a human face to scleroderma. Having had meningitis once, I cannot imagine dealing with this pain in a chronic form. Praying for and thinking of you.

    1. Hello Henoseme,
      Thank you so much for taking the time to read my blog, and to extend prayers on my behalf! :) I am so sorry to hear that you have also suffered from Meningitis, it is such a horrible experience. Sending you well wishes!

  3. Chanel, please do consider a stem cell transplant sooner than later. Once this beast has caused trouble with your heart, you will not be eligible. I am disappointed in clinics - even the great Johns Hopkins - that have patients go the rounds of every chemo and other drug imaginable while the patients decline and continue doing so. Then when they get to Dr. Burt at Northwestern, they fail the intense cardiac screen and are turned away from the ONLY treatment that's been proven effective at stopping this awful disease in its tracks and even at reversing symptoms and providing so much improvement. Patients go years in remission - maybe indefinitely.

    If your heart is still unaffected, go - RUN, don't walk.

    I wish you the very very best and let me just say that you are drop dead gorgeous, girl!