MS & I

Sunday, April 26, 2015

What I learned from the Bruce Jenner interview...

I understand that what I am going through is nothing compared to what someone who is transgendered is going through... although lets be honest, I don't believe that I am in the right body at all! I should be spending my 20's running, dancing and laughing. Instead I have been spending it in doctors offices, hospitals and crying.

"Everybody has something" well MS is my "something" and God wanted me to go through this now, while I am young. There are many things that I am having to learn, but I am not going to lie I am loosing patients, I am ready to move one from this trial, I fear that I am becoming a bitter and unhappy person due to my disability. Yes I am embarrassed constantly due to the many symptoms of MS. I tell Jeff that I just want to move away and start anew. But unfortunately this is just going to follow me wherever I go. So I just have to learn how to deal with it.  

So the next thing I learned from Bruce is just to be out there. I know I have been open about a lot on social media, but I just want to spread the word that disease does not discriminate! Yes I am young (trust me I know, people keep telling me like I don't) Next, and this is a part of the interview that really meant a lot to me even though I am sure it didn't to anyone else but, they mentioned how hard it was financially for him during his life and how hard he worked to get to where he was and now is. Yes I am a college drop out, I do not have a job and probably wont for a long time, but I am a stay at home mother. A "job" I never thought I would have. I have so so many successful friends and that's OK that I am not, that just wasn't meant to be part of my life. 

"Turn your fear into fire" I do not want to leave the house. I really just want to hide. But I do it anyways, the nights I do usually end in tears. But like he said I need to turn that fear into fire. Sometimes I am so beyond embarrassed and terrified I just want to collapse and disappear. I guess the next thing I need to learn is bravery. While having a muscle spasm/crying fit last night Jeff kept repeating to me that I am strong, cracking jokes and reminding me that what does embarrass me is not my fault. This is beyond my control. 

Bruce also spoke on suicide. He thought about it but decided "I want to know how this story ends" I know I will run and dance again. Just not sure when. Until that day I will just have to deal with the fact that I am sick, this is beyond my control. I cannot help but be embarrassed, like Jeff says "just get over it!" It's time to turn my fear into fire. 

Thursday, January 8, 2015

Why I'm doing what I'm doing...

So I figured today after getting treatments and since I've been posting pictures of me getting these "steroid treatments" I thought I would make a post of what steroid treatments are and why get them.

So the type of MS I have is called Progressive-relapsing multiple sclerosis (PRMS) it is the least common of the four disease courses, occurring in approximately five percent of people with MS. Like those with primary-progressive MS (PPMS), people with PRMS experience steadily worsening neurologic function — disease progression — from the very beginning, in addition to occasional relapses like those experienced by people with relapsing-remitting MS.

So when I experience these relapses my doctor sends me in for steroid treatments or in this case they came to me! The medication I received is called
Solu-Medrol it is a potent steroid that ease inflammation and is often used to treat an acute attack of multiple sclerosis.

As the many times I have gotten this treatment over the past 5 years, I do see that it helps but the side effects are not the greatest! they include:

• acne 
• High blood pressure = I'm                            always hot! 
• insomnia
• Lots and lots of energy ( I clean at 3am)
• I get the munchies and eat everything and anything (weight gain)
• headaches/migraines
• Stomach pain & back pain

It can take about two weeks for me to see the benefits of getting the steroid treatment. And sometimes it's better than other times! This exacerbation included double vision and migraines so hoping this helps the pain/2 of everything that I see! lol