Wednesday, June 13, 2018

Experienced Sea Captains & Me

I believe I owe everyone an apology. I have been less than honest with the portrayal of my day to day life on social media. I have painted a picture of perfect health and happiness. Followers, friends, and even family often forget what I went through, and continue to go through because of this. I don't blame anyone but myself for not expressing adequately the reality of my ongoing struggles with disease. I put on a good show, but the reality is I still wrestle daily with my conditions. Let me explain:

When ones life pre-miracle was a constant downwards trajectory, both the highs and lows of recovery all seem so manageable. My lowest day now is still better than a good day pre-transplant. (So why wouldn't I smile?!)  This in no way means I do not continue to suffer - I will deal with daily symptoms from the damage that was permanently done to my body for the rest of my life. It simply means, I function at a level of misery many would buckle under - It's just what I am accustomed to.

Imagine this: If you put a sea captain who survived a typhoon in choppy water it may seem he easily navigates these conditions. In reality, it is still difficult, he has simply dealt with worse and is more equipped to deal with the treacherous water conditions than another captain who has never seen a wave. 

Yes, I smile, I laugh, I explore, and enjoy. My Instagrm posts are filled with excitement and happiness. Simply put, I am thrilled to be alive (even on my roughest day) because it is still so much better than where I was. I was dying. Anything better than that is a miracle to me - I just don't see the point of complaining about my current condition after what I survived. My aching joints, my undigested food, my so-so lungs, and my okay heart, all seem so miraculous! I'm enjoying every moment with renewed vigor because I never know when this bonus life will end. I live on the edge of a knife, constantly awaiting the tip. I do not mean to glorify my recovery or paint a skewed picture of my reality, I am just trying to make the most of this glorious epilogue. 

The truth is I am happy, I do feel good, and I have seen vast improvements in my health. I feel like I was given my life back - but keep in mind that is relative to literally being kept alive by tubes and tanks. While I am now functioning at a level of health that seems "normal" to the outside viewer, I am still struggling. As the experienced sea captain, I am simply used to the turbulent water conditions. Rejoice with me, but also understand my situation isn't what you can simply see from the external view.

My health will still be a life long struggle - However, I now have time to enjoy the ride!


Sunday, February 18, 2018

day +411 post hsct update

Time is a funny thing, fluid yet seemingly stagnant for durations. Lately, time has escaped me completely. I find myself crossing off days on my calendar faster than should be possible. Months somehow blended into a year. I remember the days when I would apologies for neglecting my blog for a fourteen day period, yet here I am, writing an update for the first time in five months and seventeen days. I missed writing about huge milestones such as my 1st Stem Cell Birthday, my one year follow up in Chicago, and an abundance of glorious good news. The truth is, for the last 6 months I've been renovating. No, not my house; myself. I've been busy relearning who I am post miracle and reinventing what my life and it's purpose should be. I feel like I am living in a bit of a paradoxical existence. No one can tell me how long I have, or where I'll be next year. Before the HSCT my timeline was indisputable, now it's no longer clearcut. My treatment was experimental; the outcome and the longevity of its effects, unknown. My stability could be life long, or it could be but a fleeting moment. I concurred certain death, but now I'm facing uncertain life. My barring are all off and the crutches I had forcibly come to rely on for so many years are gone. Everything I was accustomed to changed when I was given the blessing of a future I never planned for. Where once I lived minute by minute, free of consequence, I am now faced with planning, goals, and liability - Aspects of life I haven't dealt with in over 6 years! I mean, let's be real, my only goals for the past six years were, "live till tomorrow," and "don't crap your pants in public!" lol It's been a transition that no one really talks about, let alone prepares you for. (Why?! This is what everyone stricken with illness dreams of, right?!) Don't get me wrong, I am in no way complaining about this incredible "bonus life," (it's a hell of a lot better than the alternative!) I am simply stating that navigating the 180 that was my time-stamped existence has been more mentally challenging than expected. It's beautiful and exhilaration and terrifying.

I've decided that this bonus life should not be spent behind the screen of a computer. Consequently, I spend less time on Instagram, Facebook, and my blog. I am out making memories, not content. While social media was an aspect of life that was tremendously helpful and gave me purpose through my trials, I feel it's time to distance myself from the virtual reality I resided in and live more in the moment. In all honesty, I don't have much content these days for the blog. I see my medical team only every few months during this glorious period of stability. (Yay!) I absolutely do not plan to run away forever, (many of my best friends are still on the other side of a screen!) I simply plan to take some "me time" to find out who I am sans tanks, tubes, and social following. I am learning to live without my sole identity being, "that dying girl," and I need some space from that social circle to find out who Chanel is again... My therapist taught me that! lol ;) This means emails may go unread, comments may go unanswered, and updates will become infrequent. Please understand this is not because I no longer care, it's because I now have a job and other responsibilities that diminish my free time. Prior to my miracle I had all day to answer emails, comments, and chat online - as mentioned, my whole life was lived behind a screen! It was my escape. So please, excuse my absence. I appreciate everyone who supported me though my darkest days, and I hope you all can support me during my triumphs - even if that means you don't hear from me as often! I am no longer someone fighting for each moment. My life no longer revolves around hospitals, medical devices, and a looming timeline. I am a (mostly) functioning 26 year old and it feels surreal.

Keep in mind, I still post updates on my public Facebook page. All be it less, but it is definitely more utilized than my blog these days. Blogging seems quite unappealing after a long day of emailing clients at work - it's just easier to go "Live." Any-who, since it's been almost 6 months I thought I would update you all on my health/life.

In December I ventured out to Chicago for my one year transplant follow up. I underwent a Cardiac MRI, Chest CT, EKG, PFT, Echocardiogram, and blood work. I saw my Motility Specialist and the researching physician who preformed my HSCT. The Cardiac MRI showed stability of my ejection fraction and no further progression of my interventricular septum flattening or right ventricle dilation. I had a bit of pericardial effusion (fluid around the heart), but not enough to need immediate intervention. My Chest CT showed no new fibrosis, just the typical air trapping due to my weak respiratory muscles. My PFTs showed some major improvements! My FVC, FEV1 and DLCO all increased. These tests deal with my ability to move oxygen in and out of my lungs, as well as transfer it to the blood stream. The DLCO was the most dramatic improvement, with a 18% increase! I now sit right around 78% which is incredible for someone with my conditions. My Echo showed lower pulmonary pressures which is awesome as well! Very minimal, but an improvement none the less! My blood work still reflects a lowered immune system, but is slowly improving. At this time I still can't fight even colds off by myself, but it's a start! My inflammation markers are non existent, but my autoimmune markers are still extremely high. It's very odd to me that the markers haven't changed, but my symptoms have. The doctor explained that these markers never really go away, they simply become dormant until activated again. The researching physician was thrilled with my progress and expressed that I should (hopefully) continue to see improvements, especially through out the next 6 months. He gave me a big hug and seemed sincerely thrilled for me.

I saw my Scleroderma Specialist in January who was also thrilled with my progress. During our last appointment he was bit worried things weren't following the appropriate post transplant timeline; however, during our visit he saw the improvements he hoped for when referring me for the transplant program in 2016. My skin score has reduced dramatically, my lungs and GI tract have greatly improved, and my joints are insanely less inflamed. I went from 30+ medications a day to one and three medical devices to zero. (Happy tears!) I was going through our old clinic notes and it's been amazing to see the vast improvements since I really started to tank a few years ago. My CDAI (Clinical Disease Activity Index) improved by almost 75% from pre-transplant. I left his office with a six month follow up time - that's the longest I have ever gone without seeing him! It used to be every few weeks you guys!

January 3th 2018 my immune system turned one! It's now known as my "Re-Birthday." Noel took me to one of my favorite cheeseburger places to celebrate, and my co-workers got me an entire pint of buttercream frosting from Cupcake Royal! lol They know me well ;)

In non-health related news, Noel and I took our first vacation since I became ill 6 years ago. We went to my happy place; Maui. It was a monumental moment for both os us. No tubes, no tanks, just beach, palm trees, and DOLE WHIP!!!! We honeymooned there 6 and a half years ago - it was one of the last places we experienced "healthy" Chanel. We were both so giddy everyone thought we were on our honeymoon! I tried to spend most my time in the water. The ocean is, and always will be the place I feel whole. We even got to check off one HUGE bucket list item for me; The Lanai'i Cat Sanctuary! It was the most magical day of my life! (Shhh don't tell Noel!) Overall life is amazing right now. I'm gaining strength in my weekly TRX work out class, stretching my vocal chords at monthly open mic nights, and planning for adventures that I never thought I would live to experience.

Hugs,
Chanel