Saturday, October 3, 2015

New Doctors & Diagnosis' - Health Update

With all the fun I've been having "opinion" blogging recently I realize I haven't done a health update in about two weeks! If you missed it, I recently wrote a few pieces for The Huffington Post and The Mighty! My favorite of which was a feature on The HuffPost Healthy Living Blog called "An Open Letter To The Person Staring At My Medical Devices" This article was a great way to educate individuals on respectful conduct when it comes to meeting patients like me out in public... and guess what? Staring is actually okay... I just have one request! Follow the link above (in pink) to take a read. 

The last couple weeks have been an amazing step forward in my treatment! I started my weekly Saline Infusions which add some extra fluid and salt to my body as it cant seem to retain them currently. This issue could be a by product of a few different causes: 1. Autonomic Dysfunction 2. Malabsorbtion or 3. An Endocrine Malfunction. Currently we haven't pinpointed exactly why I am not retaining the salt my body needs to function, but upping the dose is a good step forward no matter the cause! So every Thursday I drive myself down to the local hospital to be infused with sweet saline! Being well hydrated does the body a world of difference!

I also had my long awaited appointment with Washington State's top Dysautonomia Specialist! This doctor deals with malfunctions of the Autonomic Nervous System, which regulates all the bodily functions not consciously directed, such as breathing, heart rate/beat, blood pressure, temperature regulation, papillary changes, dilation of blood vessels, urinary/deification regulation, the digestive process, and much more! Over the years since I have started showing symptoms of this complex systems malfunction I have received a plethora of diagnosis all falling under the "Dysautonomia" umbrella; Postural Orthostatic Tachycardia Syndrome (POTS), Pure Autonomic Failure, Vasovagal Syncope, and Orthostatic Hypotension, were just a few that many forms my physicians expressed were possible. After a few months seeing each physician they would express their uncertainty in diagnosis and send me to another doctor. The ANS is complicated, and elaborate in its working, composed of two main nervous systems; the Sympathetic Nervous System, and Parasympathetic Nervous System. Each system is responsible for basically the exact opposite function, one induces the bodies "fight or flight" response, and the other induces the "relax" response. Each separate form of Dysautonomia affects the patient differently, though treatments are very often all the same. Receiving the correct form of diagnostic form is helpful however, as some forms can be more aggressive and require extensive treatment. After going over my symptoms, and doing a few in office exams over the period of two hours this amazing physician was able to express a form of Dysautonomia that matched every one of my symptoms; Autonomic Neuropathy

According to The Mayo Clinic: "Autonomic Neuropathy occurs when the nerves that control involuntary bodily functions are damaged. This may affect blood pressure, temperature control, digestion, and bladder function.The nerve damage interferes with the messages sent between the brain and other organs. Signs and symptoms of Autonomic Neuropathy vary based on the nerves affected. 

  • Dizziness and fainting when standing caused by a sudden drop in blood pressure.
  • Urinary problems, such as difficulty starting urination, incontinence, difficulty sensing a full bladder and inability to completely empty the bladder.
  • Difficulty digesting food, such as feeling full after a few bites of food, loss of appetite, diarrhea, constipation, abdominal bloating, nausea, vomiting, difficulty swallowing and heartburn.
  • Sweating abnormalities, such as sweating too much or too little, which affects the ability to regulate body temperature.
  • Sluggish pupil reaction, making it difficult to adjust from light to dark."
These are just a few of the most clinically found symptoms of Autonomic Neuropathy, though it is certainly not limited to this list. Essentially it is the total failure of the nervous systems that control your body's functions. This dysfunction can be caused by many different sources: Diabetes, infectious diseases such as Lyme, direct injuries to the nerves, or in my case an underlying autoimmune disease that has caused irreparable nerve damage. There is a particular form of Autonomic Neuropathy called "Autoimmune Autonomic Ganglionopathy" that is actually caused by the bodies immune system releasing an antibody that directly attacks the ganglion receptor responsible for these systems. This is extremely rare and is characterized by the same symptoms as regular AN . The diagnostic criteria is a specific antibody found in the blood. Though currently my specialist believes that is not the case for me, he is interested in running the blood work since I have severe Aidie's Pupil (pupils fixed in dilation), a typical attribute of that particular form. He has also requested that I preform the classic Autonomic Function Testing (list of procedures found in pink link) within the next month, along with some biopsies of my feet to asses the extent of damage done to my nervous system. Once we have fully evaluated the situation and have a firm understanding of my case we will be starting a new medication that helps control these systems called Mestinon.
And if you are wondering, yes, having pupils that are constantly dilated is really uncomfortable! Bright lights bother me extremely, I cant focus on things close up for long periods of time, and I have near constant headaches because of this. It's honestly a wonder I can blog or use my phone! haha I take lots of breaks to re-affix my eyes. 

Last, and definitely most exciting, was the appointment with my new (but actually old) Rheumatologist! Back in August 2014 I received the devastating news that my favorite Rheumy, and really the only one who has ever made any progress with my case, was leaving the practice I attended. After a year away she has returned and I couldn't be happier! It's been a hell of a year full of absolutely horrible physicians that treated me with not one ounce of respect, or cared enough to appropriately treat my aggressive disease (besides my UCLA Doc). When I received the news she was returning I waited patiently for months to covet her first appointment! I called every week in September to secure a spot asap! lol I am sure the scheduling desk hates me ;) But I am happy to report my dedication payed off and I was the first patient she saw back on her first day in clinic! 
Withing the first second that office door opened we were both all smiles! It was so refreshing to see this familiar face! We met for about an hour which consisted of reviewing the past year since she has been gone. That was quite a whirlwind of emotion, especially when I had to recall all the events of my month long hospitalization in December that nearly took my life. I think she was surprised to see how far I have progressed within such a short time frame, but was still very grateful that my skin has continued to stay 'relatively' stable-ish! She too believed it was time to change my treatments and move onto a drug that will help stabilize my organs, though she was a bit on the fence about the use of Cytoxan (the chemotherapy my Scleroderma Specialist prescribed, which STILL has not been approved by my insurance yet! Urg.) She wants me to try a drug that I have already been on called Cellcept once more before we pull out the harsh Cytoxan treatments. While I understand her hesitancy to give this dangerous drug, I have a few rebuttals: 1. I have already been on Cellcept and I believe in moving forward, not backwards 2. Cellcept takes three months to make any clinical difference in the body (which is three months too long if you ask me) 3. I would much rather hit this disease hard, then move to trying drugs over again once my immune system is reset and more willing to accept them. Overall, my organs are showing heightened progressing from month to month, and at this rate in three months I will be in rough shape. I am not willing to risk that I may be too weak to preform Cytoxan at that point; I want to undergo treatment now while I am still relatively strong. I explained all this to her and she definitely took my opinion into consideration. We both agreed that she would need to get herself thoroughly caught up on my case reports before we agreed to any treatment alterations, and that she would need to speak to a few of my other physicians before we made any set in stone commitments. I will follow up with her next week after I undergo yet another Pulmonary Function Tests, which will also give her the opportunity to contact the physicians who have been treating me in her absence. 
 Hopefully next Thursday I will have a solid game plan for the next month or so; I am so tired of playing the waiting game! I feel it is all I do these days... but at least it's only one week this time! 

I am so grateful to have a physician back in my life that I feel truly cares for me emotionally, and physically. I am not simply a number on a chart to her, one that can be swept under the rug till the next appointment. I can tell that she dedicates her time in, and out of the office to her patients, and that is why I love her so much as a care provider! True dedication to sustaining individuals lives. 
One of the funny things she mentioned in office today was, "I still haven't met anyone that loves their feeding tube as much as you!" It made me smile! I really do appreciate the device that supports my life. The day I received my feeding tube was the day I received my life back! I was a 5'10 119lb sack of skin and bones that constantly looked like I was on deaths door step; too miserable to even get off the coach to throw up. Now look at me! I may still be a medical mess, but I am at least a somewhat functioning medical mess... one who even leaves the house occasionally! ;)


  1. Love your post. And hufpo article aswell. Glad you have such a wonderful doc in your life.

  2. Hey Chanel,

    I wouldn't expect you to remember me, but we were introduced at Woodinville Alliance back in high school through mutual WHS friends. I stumbled upon your blog while deep in the depths of the internet, and was surprised to recognize the author of this blog! 4 hours later and I'd read your website back to front, continually stopping to pick my jaw up from the floor.

    While we acquaintances more than anything, I recall two things about you: that you drove a VW rabbit (which, in high school, I incredibly envied!), and that you were such a gorgeous girl with the *prettiest* smile to match your bubbly personality.

    I don't know what your life resembles outside of this blog, and I can't begin to fathom how much effort you put into your care and advocate work, but I wanted to share the esteem I have - your upbeat personality radiates through your posts, even as you work through difficulties, and your ability to handle each new milestone shows a maturity and wisdom well beyond what most of our peers would have. I respect that you're going through something I can't fully understand, but am in awe of the grace you've had through your experience.

    Anyways, leaving my warmest wishes, and I hope you're relaxing on this crisp, sunny Sunday!

    1. Hello Jordan,

      I actually do remember you, Laura introduced us back in the day I believe! lol First I have to tell you how much the VW Rabbit mention made me smile! ;) How I LOVED that car! Your words are so incredible sweet, and heartfelt! I don't think I have ever received such a sincere comment. I was honestly in complete awe reading it!

      How funny that you ran across my blog of all things! I am so humbled that you read through all of my posts, it means the world to me when a reader takes that sort of time and effort! Thank you so much for taking the time to contact me, and leaving such an uplifting and assuring message for me to read. It absolutely made my morning. I hope you are doing well!

  3. Hey Chanel!
    I am so glad that you have 2 new(ish) fabulous doctors! I am always praying for you. I am so glad that you finally know what condition you are dealing with, which I know can be a tad bittersweet at times though. But it is never bad to be finally taking some steps in the right direction with some new treatments. Your strength and spirit continues to inspire and amaze me. <3
    I was also wondering if you could possibly tell me who your dysautonomia specialist is? This might be a shot in the dark but my current one at children's is trying to find a new doctor for me, possibly even out of state because he can no longer help me and/or diagnose me with my dysautonomia. Thank You!

    1. Hey Brittney! I will private message you the name of my physician! I try not to post their info on my blog hehe ;)

  4. You have what it takes to experience a fabulous life: a great attitude and perseverance. I treated the rapidly advancing diffuse progressive systemic sclerosis I was treated to in 1988 with just that same kind of approach. I was declared completely free of the disease in 1989, a year and a half after I'd been given 6 months to live.
    My heart is with you. Live your adventure to the fullest; that in itself will be rewarding.

    1. That is SO wonderful to hear Victoria! Hugs!

  5. Have you been presented with your honorary doctorates degree yet? Cuz if not, your hat needs to be tossed into that ring FOR SURE !!!

    1. I'm about to make myself one in Microsoft Word hahaha ;) I definitely feel like I am at the hospital as much, if not more than a med student!