Thursday, July 30, 2015

Infusions & Coloring Books - Health Update

Monday I had my Smart Pill Study. This tests consists of swallowing a large timer inside a pill. It tells the doctors the pH and temperature of my entire digestive track, along with the transit time from swallowing, to defecation of the timer. This is helpful in diagnosing exactly where my digestive track is malfunctioning. The test started out with a bang! First off, you are supposed to eat a special bar that accompanies the pill, which of course I could not. We substituted with a bolus tube feed but I ended up throwing some up and gagging to much that it was really counterproductive. Then, as you all know, my esophagus has absolutely zero peristalsis, which means it is paralyzed. Swallowing large objects is impossible as they get lodged in my throat. Well, this pill was large... beyond large! It was about the size of a fat mans upper pink, and as thick as one too! It of course settled itself into my esophagus. Urg. After some choking, gagging, and water guzzling we got it to slip into my stomach! Hallelujah! For a while we thought we would have to sedate my and push it though in an endoscopy! lol Once it was all settled in my system we just had to wait. Typically this pill takes 2-5 days to pass through a system, and someone like me with a horrible GI system could take even longer! To both the surprise of myself, and my doctors, my pill came flying out in less than 24 hours. Needless to say we were all very confused! That is not normal by any means, and in no way what we expected to happen. The results wont be in for two weeks, but I am hoping it will give my doctors some insight. I can't imagine what would cause my body to literally expel the pill like that! I guess I'll find out soon... And since I am sure you are all wondering, no, I didn't have to "retrieve" the pill. It gets flushed since all the data is wirelessly transmitted to my doctor. Thank goodness!

Wednesday morning I met with my Dermatologist for my yearly review which went swimmingly. She is one of my absolute favorite physicians... which is saying something because I have a lot! lol She is young, kind, knowledgeable, and so in-tune with her patients! She took a detailed look at my scalp as I have been having issues with sores the past year or so. Recently it has gotten to the point where I cant brush my hair without getting blood, so we decided it was time to get these pesky unknown sores taken care of. Luckily she does not believe it is anything serious, but an odd side effect of a medication, folliculitis, or possibly staph, though staph would be unlikely. We cultured them just in case and are starting a third medication since nothing else has seemed to help them heal. If this medication fails we will take a biopsy of the scalp in a few months. As a funny side note, she always comments on my "beautiful skin!" Due to the extra collagen from my illness my skin literally seems to shine, leaving no dimples or blemishes, giving it a perfect smooth appearance. I often look like I am literally made of porcelain, plus that nice "anemic-glow" I have doesn't help my case ;) lol 

Some girls accessorize with shoes, but I accessorize with tubes! ;)

Wednesday afternoon was my monthly chemotherapy infusion at the local university hospital. The drug I get is called Rituxan (Rituximab.) This is a drug that eradicates the immature B-Cells in my body. The purpose is to deplete my immune system of malfunctioning cells, but I can without a doubt say, this drug is not doing its job. My disease is continue to progress, and at a very fast rate. Nonetheless, my doctors are continuing my relationship with this drug until we can locate a more aggressive treatment. Rituxan in itself is a very dangerous, and high class medication used in Cancer and serious autoimmune diseases as a last ditch effort when patients respond to nothing else. Many patients have severe life threatening reactions to this medication, but the worst part is, it can happen at any point in your treatment; it doesn't always happen your first infusion. Sometimes it's the 5th, 11th, or 100th time you receive it. Each time is a lottery. One day your body decides it has had enough poison and ties to kill you. Luckily, I have not had a large reaction in my history with Rituxan, but my nurses are always reminding me of the possibility, and of how dangerous of a drug I am pumping into my blood stream.
Today I had one of my favorite nurses, Gale. She is incredible and is always willing to go the extra mile for me. We had a lengthy conversation over my five hours at the infusion center. At one point we were talking about treatment option on the horizon and she said "It is so sad that diseases like yours don't have more research. Autoimmune diseases effect the same amount, and if not more people than Cancer, yet so little is being done." Coming from a nurse who has been working in the industry for 37 years, and seen just about everything, this small statement meant so much to me. To have someone understand the torture and fear a autoimmune patient faces in a world that can only seem to grasp illness is a validating feeling. So many autoimmune diseases have no research, and flat out no treatments made available to patients. We suffer through drug after drug that do not prove us any benefit simply because no one is willing to research our terrifying, and persistent conditions. We talked about Scleroderma specifically for a while and she told me that in her 37 years she hasn't seen very many cases. It's amazing to me that a disease as debilitating, yet fascinating, can be so unknown. I cannot think of a disease much more horrifying than turning into a living statue as all your organs become paralyzed and cease to function. It is truly an awful way to die. Overall my infusion went well and seemed to fly by today. I brought a fun pass time called "The Mindfulness Coloring Book an Anti-Stress Therapy for Adults." Coloring really does clear the mind! The time I wasn't doodling I enjoyed my time chatting with Gale about life, and where I hope to go from here with treatment. We both are putting faith in the possibility that a Stem Cell Transplant is in my future.


Next week starts another parade of appointments! I see my Electrophysiologist about my malfunctioning autonomic nervous system, my Pulmonary Specialists to repeat my PFT, and my Rheumatologist to hopefully review new treatment options. Later in the month I have an appointment with my Scleroderma Specialist from UCLA; I really believe he will be able to point me in the right direction! My body is so unhappy right now and all I can do is try to keep it a float until I see him... You can do it body! Just one more month! And thank you as always to all my incredible readers for your overwhelming support and love! I read every email, and every comment! They always bring a smile to my face! 

6 comments:

  1. I'm not even sure how I stumbled onto your blog, but I'm so glad I did! Reading your story has been incredible. I may have spontaneously burst into tears a few times, lol. I hope as you continue to raise awareness to this disease that researchers really dig into it and try to find better treatment options. I wish the best for you! Love, from Austin, Texas

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    1. Hello Gina! Thank you so much for reading my blog, and for taking the time to comment your kind words! Love from Seattle Washington!

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  2. I am amazed at your strength and courage, Chanel. You are a true fighter. Thank you for raising awareness for this rare disease. I was diagnosed with Scleroderma almost 17 years ago and I am not giving up hope. You are a true example of not giving up hope. Keep well, and stay strong. God bless you.

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    1. Neerja, thank you so much for your strength and kind words! May you also be blessed through your journey my scleroderma sister! Love. Chanel

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  3. Hi Chanel! I read a story about you on yahoo and found your blog. I wanted to tell you that I also have scleroderma. I was diagnosed with limited scleroderma at 30 years old (now I'm 32). I have tightening of my skin in my hands and feet and am starting to have digestive issues (reflux, esophageal dismotility). I know what you're going through. Its scary ... and theres not much we can do about it but try to live our lives the best we can. I truly wish for healing for you and some relief from the pain. From one scleroderma sufferer to another I will pray for you!

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    1. Hello! It is always so nice to connect with other patients who truly understand this crazy journey we are on! Sending you scleroderma sister hugs from Washington!

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