MS & I

Monday, May 22, 2017

Hawaii...

last month we had the opportunity to tag along with some friends to Kona, Hawaii for  a week. It seemed like the perfect way to celebrate the end of my quarantine. Our fly out day was exactly one week after I was cleared to travel. So as we planned the trip I figured this new medication would "kick in" by the time we made it to Hawaii. Unfortunately, that was not the case. The entire vacation was spent in the wheelchair.

I hate having my picture taken in the chair. I almost always find a way to stand up for a "normal" picture. Luckily I have an amazing family and friends that make sure I am taken care of. 
Long story short... Hawaii was beautiful & a wonderful way to break my quarantine. Even though I was hoping for some miracle healing power before we left I am starting to see improvements. I'm not running up and down the street but very small things like buttoning Sawyer's shirt is giving me hope! You have no idea how gratifying that felt! In the mean time I must remind my self that patients is a virtue and that while this treatment didn't provide me instant health, It did what it was meant to do (knock out my immune system). No matter how minor the improvements might be I believe a positive outlook is what is going to make the difference. 

"A positive attitude gives you power over your circumstances instead of your circumstances having power over you." -Joyce Meyer

Friday, May 19, 2017

Continued…

 It was so sad to learn about Chris Cornell this morning, found this article that I totally love and thought I would share !  Seems to go hand-in-hand with my last post.



By Nicole Alvarez

It’s impossible to understand why Chris Cornell did what he did. It’s incomprehensible. However, what you CAN try and understand is that depression is the devil. Depression, which is compounded by loneliness, isolation, self-loathing, hopelessness, and sometimes chemicals and addiction, will take a human and pin them to the ground face down until they are out of air and all they see is darkness. So, plain and simple, if you know anyone that you even remotely think is going through something, anything, you reach out. Pay attention to your feelings and always assume that the people you know have them too and sometimes can’t handle them alone. Basically, give a shit. Wake up and give a shit. This life is not meant to be lived alone in your head, it’s a gat damn team effort, strength in numbers. Back in the day, gladiators, some bad ass motherf*ckers, had a very inspirational approach to victory. They believed that to win, you have to fight as a single unit. I’ve always loved that. We fight as a single unit. If the person next to me is hurt, I’m going to put my arm around them and who knows, in helping them, maybe a part of me that needs healing is served as well. The least we can do is try.

Sunday, May 7, 2017

3 months...




These past 3 months have been the most difficult 3 months of my life! Not only physically but, mentally & emotionally as well. I unfortunately attended 3 funeral each month that drained me emotionally & physically. MS freaks out when my body is in emotional distress. 3 funeral in 3 months (one a month, & yes I believe horrible things happen in 3's) these 3 were so difficult due to the fact that they were all in their early 30's! WTF?! I don't handle "young funerals" very well. Especially last months funeral. I lost my dear friend Liz. Well Liz was really like a mother/sister to me (she hated when I called her mom & corrected me when I did so. She wanted to make sure that I thought of her as a sister). She taught me so many things, from how to tie my shoes to how to ride a two wheeled bike. As you can imagine this women was a huge part of my life, she helped mold me into the person I am today. In fact she is the reason this blog even exists. She counseled me in how therapeutic a blog could be. She even named the blog MS & I. This women was such a light to anyone who had the opportunity to meet her. She has defiantly left a gaping hole in this world, that could never & will never be filled.
I think another reason her death left me as a tear filled wreck was due to the way her life ended. She unfortunately lost a battle with depression. While at the viewing, wheeling through the deep sea of black clad sorrow we came to her husband. As you can imagine, this man was having to grieve with the fact that his beautiful wife, best friend & mother to his children was now gone. The first thing that came to mind was my husband Jeff. This viewing seemed to be a glimpse into how Jeff's life could have been just over two years ago when I attempted to end my own life. The immense regret I began to feel was so overwhelming, I had a hard time containing my emotions. I can not believe that I almost put Jeff in the same situation. It left me wondering why did I survive? Why was is that Jeff was able to discover me & then rush me to the ER moments before I stopped breathing & to spend the following week in the ICU on life support & then able to go home with my family just five days later, alive & well. Why me? Now I'm not asking as if I am wishing that I would have lost my life that night, but why did I survive. Why was my life saved? I wake up every morning feeling blessed to be putting my two feet on the floor & to spend my days with my beautiful Bean. Even though some days may be tear filled due to my lack of health & the inability to due simple thing like taking Sawyer to preschool or for a walk. I know I am here for a reason. I leaned very quickly after that distressing event I NEVER want to be in that situation again & to NEVER cause the grief I caused to those I love. 
I am begging anyone that is reading this & just might be suffering with any of those debilitating thoughts to please, please, please redirect your thinking pattern to realize that just because it might be easier for you to let go, it is not that simple for your loved ones. 
I used to be embarrassed to even mention depression in my blog posts. But here I am, about 7 years later of blogging. I am divulging information about my life that I thought I would never openly talk/blog about. Liz told me how therapeutic blogging could be for me. That it would not only be a way to express my feelings, but that it works as a journal for me to look back on when times get hard or when I need a reminder that this life isn't as bad as it seems. 
Long story short, please don't learn that you don't want to loose your life after a week on life support & trying to repair the damaged you caused to love ones. SPEAK up, don't be afraid to say something.  I thank God everyday that even though I am not the usual house wife that is unable to take her own daughter to preschool. I am so lucky that everyday is spent with her. That I still get to share this crazy adventure with my husband & best friend. For whatever reason I am here & that this is difficult life MS journey is meant to be lived by me. "Sometimes I wish life were easier, but where's the fun in that?"- Samantha Gramse



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.