April 14, 2016
4/14/16
Time seems to be not be moving quickly enough but yet like it's flying at the same time. June will be here before we know it. With that said, I was inspired by another soon to be HSCT patient to better explain my situation.
From the beginning, Russia was my number one choice of facility. They have been doing this procedure for international patients for a long time and I liked the idea of a smaller clinic (16 patients at a time, I believe. 8 of which are international) with close monitoring and care.
Russia's patient waiting list is out almost 3 years, so we originally did not think that Russia would be an option as we don't have that kind of time to wait. But I applied anyways last November. We were ecstatic to receive a transplant date with a wait of under a year!!! But this news is also a bit disconcerting.
Russia prioritizes patients based on disease aggression, lesion load, and lesion placement. Although I am still fairly functional, the behind the scenes damage paints a whole different picture and explains the reason I was able to get a transplant date more quickly. My lesion burden on both my brain and c-spine (neck) is not something to underestimate and the placement of several lesions could wreak havoc or cause extreme disability with any enlargement or new exacerbations or flare-ups.
I am currently washing off a very strong drug, Tysabri. This is a cause of concern as coming off of the drug itself has been known to cause a rebound effect that initiates a bad relapse causing more damage. Also as my disease is very aggressive, without being on any medication the chance of gaining new damage is high.
So my prayer is that during this washout period, I do not accumulate more damage or go through another terrible relapse prior to my Russia trip. To help increase those chances, my neurologist has ordered routine IV steroids. I hate them, but they are necessary. 1,000mg every 14 days. Please pray that these steroids are successful in warding off any additional damage or disease progression.
Today was steroid IV #1. 1 down, 3 more to go.
Also please don't be surprised if I eventually turn into the hulk… (See pictures for the new steroid induced self-portrait ;) )
April 14, 2016
4/11/16
I couldn't be more thrilled! My appointment went really well and much better than I could've hoped for!
My neurologist is on board for the transplant, has put in several new prescriptions to help keep my muscle spasticity in check before we get to Russia, and I will be starting IV steroids routinely to help ensure that my disease doesn't progress during my washout period off of my current dmd (Tysabri) before transplant!
It was confirmed that I will be able to receive the prescribed post transplant follow up rituximab (chemotherapy) treatments locally although it will fully come out of pocket. In the state of Florida, insurance won't touch it for MS diagnosis. Each infusion will be several thousand dollars. I will call the company this week to obtain the exact price...
I have been seeing this neurologist for 10 years now and it means the world to me that he is going to continue to support me through this decision! (Many neurologists 'fire' their patients when they start seeking this treatment. It is not a well known procedure amongst neurologists and it is certainly a huge step off of the beaten trail but it is much more predominant and accepted amongst hematologists.) But I am so comforted that my neuro has my back and will be taking charge of my aftercare! He even wants a postcard. :)
April 14, 2016
4/2/16
"Today I spent the day with Ahna at the ER. This MS is awful stuff.Watching someone you love full of pain. She's not able to fully use her arms, her legs are weak, and her body shakes because of spasticity. As scared as I am for her to go without me to Russia,she needs relief. Please join me in prayer that the funds will come and her poor body can get some relief." - Debra Wagner (Ahna's mom)
4/3/16
Yesterday was a doozy. I went to open a door and I injured my right trapezius muscle, which left me unable to move my head, neck, or arm. Even breathing deeply hurt as that contracts the shoulder. I could hardly move and I couldn’t eat, dress, or brush my hair or teeth without assistance. My mom took me to the ER to try to help me find some relief. Fortunately, I was fast-tracked and the doctor at LRMC gave me injections of dilaudid, solumedrol, and valium to ease the pain, spasms, and to knock me out allowing me to rest.
Lately I am struggling with muscle weakness and severe muscle spasticity in my neck and both trapezius muscles. The spasms keep my muscles fully contracted and they have stayed contracted for several months straight making them more susceptible to injury. I have strained or pulled the left trapezius muscle 3 times since January and have received corticosteroid injections, muscle relaxants, anti-inflammatory meds, oral steroids, and have been in physical therapy the past couple weeks so far to no avail.
I will stay on a prescription of valium and hydrocodone for another week or so. I am very groggy from the meds but am feeling a bit better. I am still in pain but considerably less and have more range of motion. I have been able to eat unassisted so far today but still needed some help to brush my hair and get dressed. But it’s a big improvement from yesterday so I’ll take the win.
Thank you for all the prayers and support. It is very humbling and comforting to know I am far from alone in this fight. I can't even count how many people care and are willing to lend a hand.. We’ll get past this together. Only 2 more months to go!
Until then, I’ll fight on and do my best to keep s’myelin. There’s a light at the end of this tunnel.
April 8, 2016
I was interviewed by HelpHOPELive earlier this year. One question really has inspired me to become active in advocating for this disease:
"Do you have a resolution for 2016?
This year, I am focusing on transparency, community and relationships. The National MS Society has a saying: “Multiple sclerosis destroys connections inside us. It disconnects the mind from the body and people from each other.” Too often, people with a chronic illness suffer in silence. When I was first diagnosed, I started advocating for awareness. It was a passion of mine. But eventually I lost the energy. All the energy I had focused on just surviving. Eventually I chose silence for security and traded my voice for a disguise in an attempt to mask my disease.
This year, I want to use my voice again; I want to make an impact. Hopefully my journey will help inspire someone else to keep pushing through. Too often those suffering wait until it’s dire before they reach out for help. Keeping the disease invisible gives it that much more power and it confines you. I want to inspire someone, somewhere, to not give up.(To read the entire interview: https://blog.helphopelive.org/2016/01/29/living-well-with-chronic-illness/)
***March is MS awareness month. Although I have been a bit more quiet on media lately, I have spent the month of March on a project that will take you behind the scenes into my life with MS. It is essentially a photo journal that highlights "normal" versus "my MS normal." This project has been very hard both physically and emotionally but I had wonderful, not to mention very talented, people helping me with this project along the way. I've had this idea for years but decided now was the time to give it life. This is my way of shedding a light on this disease when words just didn't seem like enough.
Stay tuned- the entire project will be posted in the very near future!
But for now check out the photo albums below for a preview!
April 8, 2016
First important update: WE ARE GOING TO RUSSIA!
One of my previous posts stated that a goal of mine this year is to be more transparent. This video will hopefully give you an even closer glimpse into my daily struggle of living with MS and highlight why I am on this journey to receive a stem cell transplant! I am not ready to give up and let my disease win and with HSCT I will beat this disease once and for all! But I still need your help! My transplant date is June 6, 2016 and funds for this procedure are still needed.
Thank you, Hank Alemañy (https://www.facebook.com/HanksProStudio/?fref=ts) for giving your time and generously creating this video to shine a light on my journey for others to follow along!
“If you will call your troubles experiences, and remember that every experience develops some latent force within you, you will grow vigorous and happy, however adverse your circumstances may seem to be.” - John Heywood
April 8, 2016
I realize it has been awhile since I have updated anyone on this site. I am so very sorry for the static page.
For those of you wanting to follow my entire journey, follow me at https://www.facebook.com/downtothelastcrumb/
or my website at http://www.downtothelastcrumb.info
I am more active on the aforementioned sites but I will do my best to add several updates here as well.
January 1, 2016
“When the world says ‘Give up,’ hope whispers, ‘Try it one more time.’”
2016 is going to be the year I gain a new lease on life! This will be the year I regain all possibilities for a prosperous future despite how relentlessly MS has tried to steal away that future these past 10 years.
Autoimmune diseases are very difficult to live with and many times those with an invisible disease suffer in silence. That has been the case with me. Eventually I chose silence for security and traded my voice for a disguise in an attempt to blend in and not show my disability. You can trick yourself into believing that by hiding it from everyone else you can hide it from yourself. You can trick yourself to believe that by ignoring the disease, you can be successful. At times you even find yourself ashamed of being sick and of being different. But I’ve learned that a disease does not define you. Instead when you embrace it, it can give you an unwavering drive and an entirely different perspective: a perspective I hope to share with you.
This will also be the year that I pull back the curtains and unveil my life with MS. I am hoping to give you front row seats to an incredible journey: a journey of trials, errors, determination, insight, and most of all, a journey of enduring hope. Even if hope is all you have, you have everything.
Have a Happy New Year everyone! And may you never lose hope in what you are fighting for.
“Learn from yesterday, live for today, hope for tomorrow.” - Albert Einstein
December 25, 2015
This year I can finally say within the realm of possibility that all I want for Christmas is a cure! And after being accepted into two facilities for HSCT, WE ARE WELL ON OUR WAY THERE!
Hematopoietic Stem Cell Transplantation is the only scientifically demonstrated treatment that has shown a curative effect for Multiple Sclerosis. HSCT is not a new medical procedure though many of you I’m sure have no previously heard of this treatment. Up until recently this treatment was quite uncommon though through yielded results, HSCT is very quickly gaining traction and acceptance throughout the medical communities for the treatment of MS. In the United States, HSCT is still in a clinical trial with the expected finish date of 2021. Once these trials are completed, HSCT will undeniably become the golden standard for treatment and reversal of autoimmune diseases! Just wait and see!
How does HSCT work? (http://themscure.blogspot.com/…/stem-cell-transplantation-r…)
The doctors and neurologists are not referring to HSCT as a ‘cure’ for MS but the patients who have received this treatment are. HSCT is a chemotherapy procedure that is followed by an autologous stem cell transplant that arrests, corrects, and in most cases reverses the progression of MS. The chemotherapy is the main part of the curative aspect as it is responsible for erasing the body’s immune system memory. This inactivates autoimmunity by making the body's immune cells "antigen naïve." They do not remember the disease process resulting in the restoration of immune self-tolerance. This “resetting” of the immune system, stops the underlying disease activity and halts any further progression. Once achieved, the body is no longer attacking itself but instead has the chance to repair existing nerve damage often yielding lasting substantial symptomatic and disability improvement!!
See the results for yourself! Here are a couple videos of patients who have been ‘cured’ of their disease post HSCT:
*** https://www.youtube.com/watch?v=Y8SAgUB5hQs
*** http://legacy.kgw.com/story/news/2014/08/04/13333484/
*** https://www.youtube.com/watch?v=yi49gJkuRlQ
Next year this time, I hope to relay to all of you that I have my life back! DISEASE FREE! This is a gift there are no words to describe; a gift that I didn’t imagine would ever be possible. Merry Christmas everyone!! And thank you from the bottom of my heart for your support!
December 4, 2015
This week has been an eventful week!
I received notice that I have been accepted for the stem cell transplant in both Russia and Mexico! I could not have asked for better news!
Russia offered a timeline of late 2016 for treatment with a possibility of an earlier treatment date if there is a cancellation. Mexico's tentative timeline is still unknown as they are very busy currently! I would still expect that date to be sometime in 2016, but I'll let everyone know for certain once I am informed.
Thank you for all of your support! This is going to be a life changing journey and we are taking it one step at a time!
