Thursday, April 28, 2016

Hello New Readers & Welcome To My Blog

I am blown away by all the support I have received since my video went viral earlier this week. My small internet community suddenly erupted after a video I made was posted on The Mighty, shortly making its way around the world wide web. The video, not specific disease related, focused on the face of illness. There is such a stigma that you must "look ill" to be ill, when in fact that is not the case. My goal was to spread "invisible illness" awareness -- and I am happy to say I think I succeed! 
I want all of you to know I read every email, comment, and message I receive on my many social media platforms! Unfortunately, with 3.8 million views, there is too much content for just one severely ill individual to reply to! Since it's just little old me, with no help to manage replies, please be patient with me. I have always tried to respond to each and every one of my awesome readers in the past -- but I don't think that is quite possible with this new influx lol My heart is so full when I read your messages, so just know that if you don't get a reply, you still succeed in making me smile! :)

My personal Facebook page (Chanel White) is for close friends and family only -- in an attempt to keep some of my life private. However, I do have a public figures page for The Tube Fed Wife! Please feel free to like the page for personal updates from me, or follow along on other social media. Big hugs!

Friday, April 22, 2016

Cytoxan Round Seven - Health Update

Chemo round seven was a bit bumpy. As you know I stared showing severe allergic reactions my six infusion; facial swelling lead to Epi Pens, IV steroids, and a change to my Cytoxan dosing to see if we could keep the reactions to a minimum while still perusing treatment. We were all geared up for a reaction to the Cytoxan with meds on standby to push just after the Mesna (bladder protectant), but right before the Cyotxan, and to our surprise within a few minutes of running the Mesna my eyes started to swell shut and my lips got huge and red!
Turns out I'm allergic to the bladder protectant, not Cytoxan.

Being silly in my pink wig at round 7!
While this seems like a better alternative, it is actually not. Cytoxan if used without Mesna results almost 99% of the time in bladder cancer, which is something I really don't need. Sometimes even with Mesna it still causes bladder cancer. You absolutely need Mesna when using this chemo and unfortunately, there are no alternative medications to substitute its function. Luckily, within seconds there were three nurses in the room slamming me with antihistamines, keeping the reaction from going systemic -- I did have a swollen eye for a few days after though! I am not sure where this leaves me for in my current treatment plan as I am suppose to have 12 Cytoxan infusions and I have only had 7. I have a call out to my doctor regarding the situation, so hopefully I will hear back soon! Other than that, the infusion and the few days after went relatively smooth. Since I am now receiving half my original dosing I didn't puke at all! Hallelujah! I was so sick of picking for a week every month. I did however still feel horrible and slept for 4 days straight! Since we halfed the dosing my hair has been sprouting like a weed which is super awesome. I look a little bit like a hedgehog right now though. Growing out your hair from nothing is really awkward! haha

My oral intake has seriously taken off! I am so excited to say that I now have the ability to eat quite a bit. I'm slowly tapering down my tube feeds and hope to someday get to a point where I can use it as a nutritional help rather than full nutritional support. Unfortunately, my ability to eat isn't perfect and never will be; I still regurgitate and have serve heart burn if I eat the wrong foods. I even got some food lodged in my esophagus the other night. So it seems food will still be "recreational" at this point, especially since I aspirate and cough a lot when I eat specific items. Honestly though, I am grateful for any intake at all! Super funny side note, I couldn't figure out why I had such a bad tension headache over my temples the other night and finally realized it was from chewing. lol It has been so long since I needed to chew something that my poor muscles were overworking! Talk about irony!

In other news, Ill be on a two week heart monitor for a while as I had an episode of Syncope (fainting) a couple weeks ago. While that isn't abnormal for me, my doctors always like to hook me up for a few weeks a year to check on my arrhythmias and tachycardia. Between my Chest Port and all these electrodes I look like a crazy robot who escaped from the hospital.

Monday, April 18, 2016

Illness Should Come With A Disclaimer

Illness comes in many forms and severities. No two patients, even those with with the same diagnosis, are exactly alike. Illness is different for everyone; what my doctor tells me may be the exact opposite of what your doctor tells you. The treatment your on may not have worked wonders for me, and the treatment I am on may not have worked wonders for you. Everyone's body is different, leading to different accompanying illnesses, different symptoms, and most importantly a different prognosis.
This blogs agenda is not to simply share awareness on an illness, but to share my journey with illness. Your story may not be my story -- or maybe it is. Just because I speak mostly of Scleroderma doesn't mean that is all my body currently battles. Scleroderma is often times all I mention in my articles and features solely because I don't want to roll out a "King's Proclamation" sized list of illnesses every time I write. I would lose readers interest after the first 10 diseases for sure! lol ...Systemic Sclerosis, Systemic Lupus Erythematosus, Leukocytoclastic Vasculitis, Interstitial Lung Disease (Pulmonary Fibrosis) Dysautonomia (Hyperadrenergic POTS & Autonomic Neuropathy) Polymyositis, Gastroparisis, Lichen Sclerosus, Occipital Neuralgia, Fibromyalgia... should I continue, or are you bored yet?

So please understand when I say words like: fatal, or terminal I am speaking of my particular prognosis -- though it is a other patient's as well. Due to my overlapping conditions, and the organ damage accompanying them, I was given a short life expectancy. This is not spreading "bad vibes" or being "pessimistic," it is just stating a medical fact. Anytime a physician puts an expiration stamp on your life you are considered a terminally ill individual -- whether it be six weeks, six months, or six years. The definition of Terminal is: an advanced stage of a disease with an unfavorable prognosis and no none cure. Incurable. To result in death. Terminal disease does not always mean we will shortly die, it means we will fight through weeks, months, or even years of suffering from a disease that will take our life well before a typical human lifespan. Treatment can prolong our expectancy occasionally, but not cure or halt our illness.

Life expectancy is a tricky topic for patients, as any of us could die tomorrow in an unforeseen circumstance -- there are no guarantees. However, when you have a progressive illness, your body can only hold out so long before it collapses under the pressure.
No, I do not live in fear of my "timeline" as medical science is always advancing. I could live well beyond my ten year limit, or I could live much shorter. I was told to say good-bye to my family last year during a 30 day hospitalization that nearly took my life. Friends came from across state to hold my hand -- yet hear I am.

So please remember everyone's journey is different. If you are newly diagnosed and recently found my blog, worried about your future remember, my journey is not your journey. You may never need oxygen, a feeding tube, or intensive chemotherapy. If you have been diagnosed ten years and are doing well remember, your journey is not my journey. Your doctor may have told you, you will live a long happy life, and they are probably right -- though they could also be wrong. I write posts, share photos, and create videos not to frighten other patients, but to give a realistic perspective on the devastating toll autoimmune disease can take on the body -- which includes death.

This is my journey, my story, and my reality. I am happy to share it with readers, and to offer support, advice, and experience when I can. Illness doesn't come with a disclaimer that we are all individuals -- but it should.

Saturday, April 16, 2016

What Is "Sick" Supposed To Look Like Anyway?!

The most frequent phrase patients hear when conversing about their illness is, "but you don't look sick!" I've personally heard this phrase from family, friends, strangers, and even doctors! While that is a lovely compliment meant out of pure kindness, I have often times wondered just what illness is 'supposed' to look like anyway? The truth is illness comes in many shapes, sizes, and forms, and often times is simply hidden, only visible if you take a deeper look. It isn't invisible like most observers believe; it is just carefully tucked away so the patient can live a more normal life -- without the constant reminder of their disease. A coat of make-up, a wig, and a cute outfit helps us feel more confident in our failing bodies, and seem more approachable to those around us.

Take to social media and post your side by side photos with the hashtag #invisibleorhidden

Video Disclaimer:

Sunday, April 10, 2016

The Tube Fed Wife Turns One!

A year ago today I decided to broaden my horizons, and share my story with the world. After years of journaling my story on CaringBridge, which was only available to my family and friends, I came to Blogger with an idea to create a more custom space to raise awareness for Scleroderma. Hoping to reach a much vaster audience, I also decided to start sharing my experience with other media outlets such as The Huffington Post. 

To my surprise people were actually interested in my journey with this horrendous disease! Within a matter of months I was receiving incredible opportunities to speak at patient education conferences, write for major media outlets, work with influential organizations in the Scleroderma community, and teach seminars for medical professionals. I couldn't believe that by simply sharing my story I was actually making a difference in the community I set out to assist!
This blog has been such a blessing in my life, it has provided me an emotional outlet, connection with other patients, incredible opportunities to expand my advocacy, a platform for awareness, and most importantly the ability to help patients like me feel less alone in their battle.

Thank you to my many readers for your beautiful support through emails, comments, and the sharing of my posts. You all have made this blog a driving factor for Scleroderma awareness.

Image via The Scleroderma Research Foundation

One of my most recent endeavors has been working with The Scleroderma Research Foundation on their 2016 Spring Research Challenge. My story was shared alongside famous faces such as Bob Saget, who lost his sister to Scleroderma in the 90s. Their efforts in research funding has lead to incredible advancements in the treatment of patients like me. To learn more about their spring research challenge, or to donate to the cause, click here!

Wednesday, April 6, 2016

Cytoxan The Anti-Hero -- Health Update

Today I feel like happy dancing on my keyboard. It was such a beautiful, sunny Seattle day filled with one awesome moment after another! First I woke up to find the documentary I filled months ago with Faith Counts released -- It was perfect, and already had over 30k views. Then I had an appointment with my Scleroderma Specialist from UCLA and it couldn't have gone better!  Lastly, to my disbelief, I was recognized in my physicians office by another patient who reads my blog!
Oh, and then I got a Raspberry Italian Soda on my way home so my day is now complete lol ;)

Today I saw my most favorite physician! He is the hard hitter who doesn't mess around and I love that. Thanks to him I am starting to regain control of my body, and in turn -- my life! Upon walking in he noticed the chart on the table the nurse had left, with out even picking it up he stated, "this isn't your chart," then left the room. A bit confused on how he knew, I waited. Upon his return with my chart he said, "I knew it wasn't yours because the other one wasn't thick enough!" haha See why he is my favorite?! Today we reviewed my latest lab results, lung function tests, and medication list. All my labs are right where they should be for chemotherapy which is great news. I had a nice low Lymphocyte count which means my immune system is being very well suppressed. Woohoo! Cytoxan is kicking Scleroderma butt! It's kind of an anti-hero though because it's kicking my butt too... Maybe I should start calling it The Punisher or Deadpool?! (Oops, my nerd is showing!)
He was also very pleased with my lung function increase, and skin score improvement. Medication wise, we will be adding a few new treatments and changing a few dosages as I seem to have acquired an allergic reaction to Cytoxan! He decided since I have made such vast improvements, and the fact that I am now having reactions, that we should lower the Cytoxan dose to half what it currently is, and add pre-meditative steroids to calm the possible effects of an allergic reaction -- he did prescribe an EpiPen just in case though. During my physically exam he said he could definitely see signs of reaction in places like my eyes and mouth, which is nuts because my last infusion was three weeks ago! I received some steroidal mouth paste and eye drops to help subside the effects.
This lower dosage will be AWESOME because that means my next 6 months of chemo won't be as hard on my body -- I may even get away with not puking my guts out for a week at this dose.
We also decided to add Massage Therapy to my bi-weekly Physical Therapy, which I am super pumped about. Who doesn't want to have something so heavily prescribed by their physician?! lol Overall it was a great appointment and he was very pleased to see such progress. I was told that I should see just as much improvement over the next 6 months as I have seen these past months. I cant even imagine where I will be by October! Hopefully I will be well enough to work or volunteer once a week somewhere.

After my appointment I headed up to the front desk to make a follow up appointment and to my surprise, a woman came up to me who I didn't recognize. She introduced herself and told me she recognized me from my blog; she was another Scleroderma patient waiting to see the same doctor! We chatted for about ten minutes; she was so sweet and expressed how my posts, and openness with my battle, was an inspiration to her -- it gave me goosebumps! I never dreamed I could be a household name for patients -- yet here I was being recognized by a stranger. My heart is so happy that I can spread awareness and bring strength for those battling Scleroderma! Talk about a celebrity moment ;) haha I felt super famous! We parted ways with a big hug and I haven't stopped smiling since!
Tuesday I go in for my 7th round of chemo. Not quite in the home stretch yet, but getting close! I am so happy to finally see the light at the end of this very long, dark tunnel I have been stuck in for the past 4 years. I honestly thought I would never find a drug that could reform my body to a more livable state, yet here I am eating yogurt and breathing on my own! It's the little things.

Faith To Not Be Healed -- Video

Back in early November I had the amazing opportunity to work with an organization called Faith Counts. I was honored to be the subject of one of their video documentaries to share a message on the importance of faith -- especially through trails.
It's incredible watching this video only five months later to see how much has changed regarding my health. I am now oxygen free, have a beautiful head of short hair, and no longer have to draw on eyebrows! lol I adore the scenes they captured, and especially love how every moment emanates my goofy personality... and very expressive face. ;) Faith is a driving factor in my fight against illness, and brings me great peace and comfort through very turbulent times.

"Faith Counts, LLC — a nonprofit, nondenominational organization comprised of faith communities representing nearly 100 million Americans. We’ve come together to share a simple message that “faith counts.”
Each day, faith inspires people to reach out and help others. It connects them to a diverse and vibrant community. It empowers them to rise above the sometimes gritty reality of everyday life. 

There is a growing sense that faith should somehow be kept private. Many are embarrassed to share how their faith makes them who they are. We want to change that.

So dive in and explore! No matter what your background is, we hope you will see how faith counts. Be inspired, connected and empowered. And once you’ve done that, share something that will inspire and empower others."  

*Quote via