MS & I

Thursday, March 2, 2017

post treatment...

It has been about 3 weeks since my 5th and final Lemtrada treatment and to be honest and pardon my French here, but I feel like total shit. The good news is this is normal. Within a week of therapy I found myself in bed all day, which is not as good as you would imagine. The simple task of getting out of bed to use the restroom seemed impossible. Once I finally made it to the restroom and back to bed I felt like I just got done running a marathon, feeling that it took just as long as a marathon as well. 
I was relieved after speaking with my doctor that I should feel like “I was hit by a bus”. Well guess what?! That is exactly how I feel! So in a weird way, I was glad/almost happy to hear I felt so horrible. Like I knew the drug was doing what it was supposed to do. Completely destroying my immune system. 
Yesterday I made the trek to my MS doctor to talk about blood work and other testing I had done. The good news (that doesn't sound like good news) is that the medication did exactly what it was supposed to do... I no longer have an immune system. My levels were so low in fact that the hospital lab called my doctor to inform her that I am anything but healthy, and that my immune system was no longer functioning.
So why is this a good thing? Well the whole point of this treatment was to wipe my immune system clean (my white blood cell count is none existent) so that my body will hopefully re program its self to stop attacking my nervouse system. Thus the term autoimmune disease. 
So as of right now I am under a sort of quarantine as I try to avoid any type of virus. I should be a hermit, but I am really struggling with the thought of never leaving my house. The only problem is that when I do try and venture out, my entire day and body is completely wrecked. 
Over the next 12 months my body will be working on rebuilding the white blood cells and their ‘subsets’. 
My doctor reassured me that in about 3 weeks I should start feeling like myself again. Even though I will defiantly still be dealing with the effects of MS. It wont be for about 3 months I will finally start noticing the positives from this treatment. 
So until I am clear to join society again, I will try my best to rest and let my body learn how to act properly again. 

Wednesday, February 8, 2017

5th & final treatment...


Today marks my 5th and final day of my new treatment, Lemtrada! So why did I start a new treatment? For the past almost 5 years I was on the infusion treatment Tysabri. Everything about this treatment seemed to be going great until I had Sawyer. 3 months after giving birth I started to notice the all too familiar symptoms of MS. Soon I resumed my infusion treatment one a month. While at first I was hopeful that the medication would possibly kick in 3-6 months after starting treatment again, but one year later I was still suffering from the terrifying MS symptoms. while voicing this concern to my doctor, she informed me of a new drug that was awaiting FDA approval. I waited & waited until the drug was finally approved. Unfortunately my doctors concluded that the this new treatment would include side effects that would greatly outweigh the benefits. As I mentioned in my last post, I found my self practically begging for something new. My understanding doctor was quick to give me two options, start the risky treatment that they preferred not to use or wait again for another treatment to be FDA approved. After contemplating the possible risks, I decided to begin the treatment Lemtrada.
just some of the RISKS- Infections can be severe and common.
  • rash
  • headache
  • thyroid problems
  • fever
  • swelling of your nose and throat
  • nausea
  • urinary tract infection
  • feeling tired
  • trouble sleeping
  • upper respiratory infection
  • herpes viral infection
  • hives
  • itching
  • fungal infection
  • joint pain
  • pain in your arms or legs
  • back pain
  • diarrhea sinus infection
  • mouth pain or sore throat
  • tingling sensation
  • dizziness
  • stomach pain
  • sudden redness in face, neck, or chest
  • vomiting
















    BENIFITS
    Proven to cut relapses in half over 2 years 
    Proven to help most people live relapse-free at 2 years
    THE BOTTOM LINE... I just might have a "normal" life!
    ok... so I know that the risk involved doesn't seem worth it, but there defiantly comes a time in life that after being diagnosed with multiple sclerosis for 7 years and you have a daughter that wants to play with you, but you just can't find the strength or energy to get off the couch. Risks like these aren't scary. What does scare me is living in a wheelchair, unable to care for my child, the inability to have more children & the most terrifying of all, my inability to be self reliant and to do things on my own.







Thursday, February 2, 2017

let the new treatment begin...

Lemtrada day 1, 8:30am

About two months ago I made an appointment with my MS doctor. Through tear filled eyes, I explained the struggle that I experience on a daily bases just to do small and simple tasks, not to mention raising a 3 year old. During this emotional conversation another doctor entered the room to discuss my options. Although they were reluctant to have this new drug as an option for me. They advised me to talk with my family and make sure I wanted to take the risk with this new medication. As I sobbed heavy tears I thought to myself that this just might be my last ditch effort to obtain a "normal" life.
And so the process began. First things first. My doctor ordered me to go on a two month medication cleanse in order to clear my system of the previous medication. This was scary to think about. I have been on some kind of MS treatment since 2010 and worried just how I was going to pull off this 2 month cleanse. I felt the "withdraws" within a week. Needless to say the past 2 month were the definition of a physical struggle. 
During those two months I had to receive a number of tests so that I could be clear to begin the new treatment. Including a skin check to make sure I didn't have any signs of skin cancer, a pap smear, HPV test, MRI and countess blood tests. I appeared to pass all test with the exception of the MRI. My MS lesions are all over the place, such as my brain. neck/spinal cord, thoracic spine and lower back. in the past 7 years of my diagnoses my MRIs had been coming back as unchanged. This time was different... my thoracic spin showed a worsening of MS (more scar tissue/lesions) Even with the proof of my condition worsening insurance was quick to deny me of any treatment. I was sure to file an appeal and my doctor met with the insurance board to make sure they were aware of the worsening of my condition and that this medication just might be my last hope. A short week later I received yet another denial letter. So now my other was option was to file for financial support through the drug company it self, trying to figure out how I was going to fit this $160,00 bill. Fortunately after two weeks or so I received the good news that $158,500 would be covered by the company. One less hurdle to jump over! (Yeah for Sam)
So longer story short here I sit... in a warm and dark room waiting, hoping and praying for the best. 

Thursday, September 22, 2016

hmm...

Sitting in the hospital getting my 56th Tysabri infusion when I realized I missed writing a blog post for last month. My bad, my bad! So I have two hours to kill and realized this would be great time to "put pen to paper" and let you know what has been going on, but honestly there is nothing to exciting to report. Well, there have been many things in the works over the past two months. but honestly I have been very reluctant to share any of those things because I am scared that I might "jinx" the chances of them happening.
For example: if you follow me on Instagram & or Facebook you saw how giddy I was about the opportunity to get myself a service dog. This is something that I have been looking forward to for years and it was finally going to happen! With money that I made from the car accident I could finally afford it. And that meant that I would no longer need to employ my cane or walker to help me get around.  But alas it didn't pan out and soon I would literally go crawling back to those horrid devices. So what happened? Titus, my future service dog had been in training for 2 weeks when I got the sad news that he just wasn't going to work for what I needed. The trainers were worried that he might be a bit too skittish and possibly knock me over or drag me down. Something I definitely did not need or want. Obviously heart broken and overwhelmed I decided not to continue with the program and find another dog. (I was going to post a pic of Titus and I, but I actually deleted all of them.) So because of that whole situation you can see why I am hesitant to share any "news" until things are set in stone.
So with that being said I can only hope and pray that things go the way I plan, but then again  I NEVER planned to be diagnosed with MS at the age of 21 before I really got to experience life. But it is what it is. It sucks, big time. But I am a firm believer that everything happens for a reason and for whatever reason I was "blessed" with this struggle in my life. So for right now I will just have to be stared at while using a cane or walker.  And as in the words in my late brother Denver '"who cares?"

Friday, June 24, 2016

camping...


A few weeks ago we were able to do a little camping trip with our best friends and their family. I love the out doors and consider my self lucky to live in such a beautiful state. It is defiantly one thing that I wish I could be more involved with. But I was always worried that in my condition it would be more of a pain rather than an enjoyment. After years of saying how much we would love to enjoy more of the outdoors we finally made the decision that a few purchases might make that goal possible.
Last summer Jeff got a part time job (as if he didn't have enough on his plate already!) at the local Sports Authority to get the employee discount and to put some money away to make bigger purchases. Soon walking poles in tow we felt ready to get down and dirty and go camping!

Still rather fearful that it might be too hot, that I wouldn't be able to sleep, or (my biggest fear) not being able to get around the campsite. Oh and to top it off my 2 1/2 year old was coming as well! On the bright side I was also going with my amazing husband who pretty much did ALL of the packing and shopping. And our amazing friends who pretty much made this little get away possible.
one of my favorite parts of the weekend we went on a very short walk/hike to the water falls. The beauty of the falls was really just a perk to what made this day so great. I will talk more about this in another post, but I have really been pushing my self to work out every morning before my daughter wakes up. I start each morning of with 30 minutes of yoga and then 45 minutes of Ti Chi. Feeling like now was the time to really test it out! I surprised myself, husband, and friends as I decided to do little exploring my self. My husband behind my. caught off guard that I didn't turn around for assistance he began to record.

video
Oh my goodness! This was all me! I totally shocked my self. Just about a year ago I struggled just climbing the stairs while holding on to the banister. So now I definitely consider myself as someone who is healing from MS and not just someone dealing with MS.

Friday, May 20, 2016

crash...

my new nickname from a friend... A couple of weeks ago I had the awesome experience of getting in a major car accident. I guess you could say I have experienced almost everything dramatic! I swear  this world is out to get me! I so far have survived MS, cancer, a week in the ICU & now a crazy car accident that completely totaled my car but, I walked away. I spent less time in the hospital then I usually do. Like my husband says "nobody can kick your ass but you"


I was spun across 3 lanes of traffic & and ended up on the front lawn of a Subway.
(I was trying to turn left)

what is so crazy is that I felt like I was in a movie going "slow mo" as I saw the truck speed up & then slam into me. The next thing I remember was trying to hit the breaks because I didn't want to end up on the lawn. I don't know why I would find that important after being in a head on crash. The next thing I heard was a knock on my window from a police officer who was trying to open my door but couldn't due to the front bumper being lodged under the door. Two bewildered gentlemen ran from the Subway to assist the police officer. Before I knew it paramedics were speaking with me about going to the nearest hospital. Soon I was loaded on a backboard/stretcher into the back of the ambulance. While at this time I was in surprising minimal pain, I still felt tears streaming down my face. Soon Jeff was in the ambulance doing just what I needed, cracking jokes about the condition of the car saying "there is a chance you might not be able to drive that car anymore." What Jeff & I have found in this life of issues is that humor is what need in order to handle some of life's tough situations. When I arrived at the ER they sent me in for some x-rays to make sure nothing was broken. I was amazed that just 3 hours later I was walking out of the hospital.

On the ride home I jokingly reminded Jeff just how boring his life would be with out me. And then we spoke about how blessed we are that Swayer was not in the car with me (I was on my way home after dropping her off for her first day of preschool) & that even though my situation is definitely not ideal I do have so much to be thankful for & when I really think about it I have a pretty great life, mostly due to the people that surround me. While resting in the ER both of our phones were receiving text messages & phone calls of concern & love. I wondered how the heck people knew about the accident as I was still trying to take in the fact that I had just been in a accident. I defiantly wasn't surprised to find that my brother Trevor took the time to write a concerned post asking for prayers and good vibes for his little sister. I was shocked to see over 100 comments from people that I didn't even know saying that I was in their prayers. I truly believe that is one of the main reasons why I walked away with only a few cuts, bumps, & bruises. Who would have ever thought that Facebook could be such a blessing. 

While Ive been reflecting the past few weeks I absolutely believe that my heavenly father was watching over me & that for whatever reason this happened to me for a reason & that I need to take this experience and learn from it. 


Monday, April 11, 2016

can't...


Recently I have really been focusing on my health. I know that sounds weird considering my current health status, but I have noticed over the past 6 years of my diagnosis that I have basically been like a medication robot. Every morning I wake up grab my pill bag and pill case and begin the pill taking "countdown".

This is my norm, I feel like I need these pills to get through the day and to sleep at night. Which is totally fine. I am honestly not bothered by this at all. No its not like I take the pills and fill like I can now conquer the world and the my MS no longer exists. It does however give me the energy and strength I need to fulfill my daily tasks. But I feel that this is not enough. I need not only the ability to complete my tasks of the day but the confidence that I can do them.

Here is where the word can't comes in. In order to be healthy in body I finally realized that my mind needs to be healthy as well. I am constantly told how positive I am and that my attitude is remarkable.   I do feel blessed to have a positive outlook on my life, but I also feel that I tend to put on a good show. Some days all I want to do is mope around and feel bad for myself, which does absolutely nothing for me and only declines my health more. 

So I have decided that step one of my mental health journey it to eliminate the word can't. I remember very clearly in my first grade classroom a wreath hanging in the front of the classroom that read "can't died in the cornfield". I am eliminating that word from my vocabulary so I don't tell my body what it can or can't do before I even try.
no more excuses saying "I can't because of MS" 
you are what you think!