Friday, July 24, 2015

Dwindling - Health Update & Scleroderma Conf.

I received some bad news again this week; it looks like I will have some important decisions to make in the upcoming months. During this time I may be a little on edge as half my medical team is taking this very seriously, and the other half doesn't seem to be phased. While I trust my medical doctors opinions, I also feel I am too young to just sit around and wait for this disease to get "worse." I will from this moment on be gathering second opinions from other medical professionals, and looking into more aggressive treatment options as it is clear to me know that the path I am on will be doing nothing to slow my disease progressions. Before I jump into all of the nitty-gritty details I want to start with some positive vibes...

Last weekend was the 2015 National Patient Education Conference held by The Scleroderma Foundation in Nashville Tennessee! I cannot express to you all my excitement as my Mother and I lifted off the tarmac in Seattle. Last year I had been unable to attend due to an emergency surgery so we made a pact that we would attend the conference that upcoming year! After a year of sheer anticipation the conference did not disappoint! I had the absolute pleasure of meeting some of my best friends in the entire world! As a young woman suffering a rare disease I have grown very close with many other individuals suffering this illness through social media, and to meet them in person, to hug them, spend time with them, and actually speak to them was a dream come true! I cannot even explain the immediate, lifelong connections I have sown this past weekend.
We had the once and a life time experience of partying downtown Nashville on our second day, which was actually quite comical! All of us gimpy individuals with oxygen tanks, feeding tubes, wheel chairs, and ports jetting out of our chests while dancing and singing to country music at the top of our lungs. On lookers must have been very confused! lol This was hands down one of the most memorable experiences of my life! We even got to meet the band who took pictures with us after the show!
On the last day of conference I had the great honor of speaking on the "Living Well with Scleroderma" Young Adult Panel which consisted of me, and two other patients. I adore public speaking, but never dreamed I would have the opportunity to speak at a National level! I am still in shock that it happened! I finally feel I know what my calling in life is... to yell the name of this disease from the top of every mountain!



I unfortunately got pretty sick on the last day as we winded down to the last few hours before our flight. My body just isn't used to being off a couch very often. Once the adrenaline wore off I crashed rather hard. I ended up early making it to the airport before I passed out. Luckily I had wonderful travel companions and there were doctors from the conference in the airport if I needed them ;) lol Overall, I wouldn't trade this experience for the world! It was worth the immense body pain and struggle on that last day!
Once I returned home it was back to the daily grind with an early morning appointment to see my Electrophysiologist. This doctor is a specialized Cardiologist that basically deals with the "wiring" of the heart, in very simple terms. I was referred to him for my SVT episodes, but what we decided to treat was something entirely different, and actually the reason behind my SVT! First off let me just tell you that I LOVED this doctor. He started off by being right on time, which is always a good sign, and continued his awesome streak by talking to me like a well informed individual! He could tell I knew my stuff so he didn't use any of that "baby language" as I like to call it ;) After looking over my medical records, and chatting to me about my symptoms he decided the real problem wasn't my heart at all, but my body ability to retain electrolytes. His words were "Im going to be honest, your body is screwy. Extremely screwy!" Which I whole heartedly agree with. He explained that due to my autoimmune issues, severe malabsorbtion, and my reliance on a feeding tube, my body just can't retain its electrolytes and minerals it needs to function properly. This lack of necessary nutrition and absorption is causing severe autonomic dysfunction, meaning my body can no longer regulate things like proper blood pressure, heart rhythm, and heart rate. This dysfunction is whats causing my fainting spells, low blood pressure, tackycardia, and odd heart rhythms. His protocol in this situation is fairly simple, to prescribe a medication that helps the body retain salt and electrolytes! Now, the catch is, it's a steroid and I am already on steroids... which really shouldn't be done, but we have no choice. It's safe, just not ideal. The other catch is that you have to have at least some electrolytes and sodium for the body to hold onto, which I really don't. He basically said he can't compare my baselines to the typical norm because I am truly one of a kind, so we are basically free falling here! Hopefully this pill will work, and if not our backup plan is to start daily saline infusions to keep me out of Hypotension, which is a fancy name for serious low blood pressure. If you all know what the condition POTS is, that's basically what I have with a few other autonomic dysfunctions thrown in. In a blanket term it's called Dysautonimia. Normally POTS is not connected, or due to a connective tissue disease. It is typically a stand alone, idiopathic condition, so he is hesitant to call it that. Again, he said he can't really compare me to others since my body is so out of whack! Overall it was a great appointment and we have a solid game plan! No ablation needed! I can't wait to follow up with him in a month!

Next I was off to my Pulmonologist for a  pulmonary function test (PFT). We have been following my pulmonary and diaphragmatic function very closely lately. A typical patient has this test done every six months to a year, whereas I am having it preformed every 4-6 weeks. There are three very important factors we look at on my PFT, the Diffusion Capacity (DLCO) which expresses the lungs ability to push oxygen through the air sacs of the lungs into the blood, the Forced Expritory Volume (FEV1) which expresses the amount of air your lungs can force out, and the Respiratory Muscle Function (PI/PE). This values give my doctors a look at my overall respiratory systems functioning ability, and also a good idea of how my disease is progressing. Unfortunately during this PFT we saw a large decrease in my respiratory functions. My DLCO dropped by almost 20% leaving me now in the mid 60s, my FEV1 dropped 11% leaving me in the low 80s, and my PE/PI stayed within my typical range thankfully, however it only functions at a measly 20%. These numbers make the obvious statement that my disease is progressing and the current treatment regimen I am on is not adequately slowing this disease. The DLCO especially is a huge red flag as any number in the 60s means there is an evident obstruction, or notable Pulmonary Hypertension. While I was in significant alarm seeing this drop my doctor seemed unfazed, stating they were probabaly false readings.  I conveyed my belief that they were not as this decreasing pattern has been pronounced over the last year however, he still did not agree. While I trust his expertise, I am very unhappy to have lungs functioning so low, with a progressive decrease I function, especially at the age of 23. For this reason I will be re-preforming the tests in two weeks to verify the results, and getting a second opinion from another doctor who is wiling to preform a right heart catheterization which I believe would be beneficial. I will not longer sit idly by and accept everything my doctors are telling me; this disease needs to be treated more aggressively and I will not rest until I found someone who agrees with that. I made some professional connections while at the Conference this last weekend and am confident these connections will help lead me to better treatment options, even if they are experimental.

While I convoy mostly strength and resilience and this blog I want you all to know that having a disease that you know will take your life much before your time is truly devastating. I have my days when I break down, become distraught, cry, and feel emotional about my circumstances. Constantly being left in limbo about your life is such a difficult existence. I loath relying on medical professionals for my every need; I was once an independent individual with reigns to my world, but declining health has stolen that from me. While I feel I have prepared myself for every blow, and truly accepted the destructive nature of this illness, sometimes it is still hard to embrace. Each day is another hurtle, another tempest, another period of time spent trying to pick yourself up again. No matter how adjusted to bad news you feel you are, sometimes it just still hurts.  I have said before that life with this illness is like a vase being repeatedly smashed. I know that my beautiful, perfect vase will be destroyed and I have prepared myself. I know that no matter how hard I try to frantically place those broken pieces back together I will never be able to place them exactly the way they were before; it would be a lost cause. I feel with this knowledge the blows become easier to take, each smash doesn't leave me lost. I have learned that even with my shattered pieces I cans till construct something beautiful, though it may be different, it is still functional and pleasing to me. Yes.... I know my vase will be mashed and I am prepared... but that doesn't mean it doesn't hurt watching those pieces splinter. It doesn't mean that glue I used to reconstruct it was dry of tears, or that the tape I used wasn't wet from sobbing. I am a positive person, and a strong individual, but I am here to let you know that accepting and embracing every emotion is never a bad thing, even if that emotion is pain, fear, hurt, or the acknowledgment of an unstable future.

This upcoming week I have many appointments and procedures as usual. I start with a Smart Pill Capsule Study to time my digestive function on Monday morning, plus a Rituxan Infusion, and a Dermatology appointment later in the week. Before I sign off on this post I wanted share a wonderful article one of my beautiful Scleroderma Sisters, and fellow Chronic Illness Blogger wrote after a conversation we had last month. I am honored to work with this individual; the Scleroderma community is so blessed by her knowledge and willingness to share.
To visit our Feature: You Won't Believe The Story Behind These Two Faces
To visit her Blog: Comfortable In My Thick Skin

23 comments:

  1. may the almighty God help you and other scleroderma patients suvive it and live a better life amen

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  2. may the almighty God help you and other scleroderma patients suvive it and live a better life amen

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  3. HI CHANEL ME CONMOVIO TU VIDA DIOS TE AMA Y SOLO UN MILAGRO PUEDE SALVARTE, JESUS TE QUIERE SANAR TU QUIERES SER SANADA? TEN FE TRUST IN JESUS GOD LOVE YOU! I WILL PRAY FOR YOU EVERYTHING WILL BE OK IN GOD'S HANDS...SOY CATOLICA APOSTOLICA Y ROMANA LA VIRGEN MARIA TE CUIDE

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  4. You just take it one moment at a time ....PARTY ANIMAL !!!

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  5. Dear Chanel, I was glad to see you posted again after mentioning last time how busy you would be in the next couple of weeks. Your activism and writing must take a heavy toll on you, but it is obviously succeeding in putting a face on scleroderma around the world already. If one Brazilian newspaper article yields the response it has, the sky is the limit! Healthy Chanel must have been a force of nature if THIS is what you can do with one hand figuratively tied behind you. More power to you, and I hope your efforts pay you back in benefits to your health too from the outpouring of positive response so far.
    One quick question before I even finish your post: are you saying your oxygen saturation falls to the 60s when you are not on supplemental O? I have PF testing about twice a year when I can't wiggle out of it, but am not familiar with the test you were referring to. I hope your sats are not that low!
    Hugs from your sister in a Salter (big ol ugly type today), Vivia

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    1. Vivia, you are so so sweet! You comment brought such a smile to my face! :) I was quite a busy person when I wasnt sick! lol Now that Im sick all I can do is blog so all that pre-sickness energy gets thrown into this I guess! haha The PFT is when you breath into that snorkel looking thing! I have to do it every couple weeks right now... Bummer! Mine are about an hour long and its exhausting! Love your sign off! (sister in salter!) That's adorable! Hugs!

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  7. I googled DLCO, so you don't have to respond to my question! Good your doc is right about the result. Hope you are feeling better this weekend!
    Your fan Vivia
    PS the article and blog with and by Lisa are awesome: eye opening and inspiring! and should draw lots of positive attention. You two together are TNT against scleroderma ignorance !

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    1. Thank you so much Vivia! I just love reading all your comments, they always make me smile! Hugs from Seattle!

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  8. sorry Chanel, that should be "hope"your doc is right, not what I said. over and out!

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  9. Hi,

    It is really an inspirational to me , as i have experienced sometimes the feeling of badluck, depressed and you know put down by a side, i felt like i was hopeless, i couldn’t be able to fight against such situation feelings like that, even though u know that u are physically well and good but feeling mentally its quite difficult to empower the confidence and resist the situation condition. But after reading your stories and feeling the strengths in your words, it seems like while u all can even after in such a hard condition than mine, can have developed the confidence to fight and resist in life then i must not to loose the courage and keep trying.

    Thanks for your sharing.
    Wish may GOD bless u with lots of enough happiness and satisfaction in life.

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    1. Through it all it's great that you were able to experience and share your time in Nashville. Not just to conference but your time out on the town. Living it it up. Signing, laughing and just enjoying.

      As for the shattered parts. Well no shield and armor without dents and cracks has ever really been tested. Dents, cracks, breaks tell more of a story than something that just simply shines. :-)

      Joe Roberts MSG U.S. Retired

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    2. Hello Shyamal, thank you so much for your kind words! Keep your head up and continue your fight! You are a strong warrior with courage to face your battle! :) Big Hugs!

      Joe, you are so right! I just adore that analogy! My armor is looking pretty beaten right now haha But it definitely has a story to tell. And I am grateful for that! I am so glad that I got to really experience Nashville as well. Truly live for a day! :)

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    3. Hi
      Thank you very much for your reply and motivational , self courageous words.
      But, further more i would like to share my thoughts about to fight in life. When once i fight against my mental weaknesses for the condition situation, i feel i have won the battle , but ultimately when once again the such situations comes in , i felt it like , "oh common !, this is not a life that i have to again and again fight towards such difficulties, it just pathetic to me , i dont like this, it's irritating to me to fight in again and again, why it shouldn't be gone for ever, after once we fight and won , why? I feel that the remain fighting in a life , is not the life , living is the life , i have to concentrate on learning to living a life and not to concentrate on fighting. Here, i feel that, there are two different perception or if i can say a perspective of a life , whether to remain fighting in a life or to living a life!? Fight or Live !?
      But after reading your and others stories about fighting and living and about scleroderma, i feel i got my answer!
      Both the things are fact in/of a life. Fight means to ACCEPT Who you are, What you are, How you are NOW and
      To LIVE means to learn to accept the truth and change the perspective or perception towards the life, life is more precious , more beautiful, more courageous and it can be seen, experience and realized only by developing self positive attitudes towards the life and yourself. So, learn to live.

      Thanks
      With lots of love!

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  10. Hi! You don't have to get used to be sick! Instead, put all of your faith in Jesus and pray and fight to prevent sickness to rule over your life!
    Many blessings!!!!

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    1. Self-righteous religious bullshit. Religion isn't always the answer and to try to promote that to someone like Chanel is hateful and cruel.

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  11. Hola te escribe una Químico Farmacéutico de Cusco trabajo en Medicina Complementaria en el area de preparados y formulacion de fitoterapicos, he revisado la informacion de los productos Transfer factor y seria interesante que tambien los revises ya que existe demostrado que muchas enfermedades son originados por alteracion del sistema inmunologico a esta ciencia se le lllama la psiconeuroinmunologica. El producto esta catalogado como alimento y en Rusia es como un medicamento. Cualquier inquietud con mucho gusto al correo edison_pe@yahoo.com

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  12. Hi my name es Alma And Y know for Jocelyn my soon a little about chanel and her sickness please contact at the doctor Brian Weiss he can help You. Sorry for my poor english and Y hope that chanel will be fine and sonate bay <3

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  13. Chanel,

    I recently read an article about you on dailymail.com, and I felt happy NOT because of your illness but because of your ability to stay positive and happy. I too have scleroderma and I know how hard it is to stay positive or to even get out of bed. I went 7 year undiagnosed seeing specialist after specialist until 4 months ago. I was finally diagnosed. However to see a doctor that knows anything about scleroderma. I have to wait 6 months for the next earliest appointment. I am ready to just give up. I live with severe chronic pain everyday and obviously there is no cure so what's the point in going to the doctors anymore. Im 23 years old and have gone 7 years in pain so what's the rest of my life. I felt alone until I read the article and your blogs. I just wanted to write you and let you know that your ability to stay positive and continue to smile has inspired me. So as long as you continue to fight and stay positive SO WILL I.

    We can beat this.

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    1. I will always fight, and so will you! You are right, we are in this together :) I am so glad you contacted me! It is not often I meet other young scleroderma warriors! I am so sorry to hear of your suffering at the hand of this illness, it truly is awful. This disease takes everything from us... But know you are not alone. I hope your doctor will have a treatment plan to help your pain! Please feel free to contact me anytime! I am always here. Hugs!

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    2. Thank you for caring and taking the time to reply.

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  14. Mrs. Chanel White,
    My sister died of Scleroderma in 1995. She was age 44, after a one year illness, she had it and did not know it and would not get to a doctor early enough. I searched high and low to help her, but she was taken before I could finish my search. What I am about to mention may sound a bit off the hook, but I would try anything to save her. Edgar Cayce was know as the sleeping profit. He would go to sleep and give answers to illnesses. He was so good that they had a hospital in his name just for things he would say. His diagnosis' were always accurate, even before xrays were invented, he knew what the person had and what to do to cure them. He has a cure for Scleroderma. Please take some time to check out his website and bring up scleroderma. It wouldn't hurt to look to see what he said. He suggests a month in the hospital, blood transfusions and diet to get rid of scleroderma. The illness took my sister so fast, I did not find this in time to encourage her to try this. It is worth a look see. All the best to you, Diane Ross in Sacramento, CA

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    1. I am so sorry to hear of the loss of your sister Diana. This disease is truly awful. Thank you for taking the time to contact me with this information. You are absolutely right, it doesn't hurt to look into anything and everything when battling this devastating illness. Hugs from Seattle.

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