8 Years On Tysabri – MS Tuesday

MS

On my birthday of this year, I will have been on Tysabri for eight years. It is so hard for me to wrap my mind around that because at times it seems like I just started yesterday. I also look back, and I see how far I have come and how much I have learned about the healthcare system in this country. I also have learned the most drug companies have programs to make medications cheaper and that give them to you for free.

As I sit here and think about the first infusion that I ever I had I am amazed that I am a still taking this medication. I had an atrocious reaction to the first treatment so I wasn’t sure if I would be able to stay on it not to mention how much money it costs every month. I don’t know that I ever wrote about what happened the very first time I got the medication, so I am going to add it to my list of things to share.

I have to wonder what my life would be like if I hadn’t started Tysabri and if I wasn’t on any treatment. I have been stable the entire time I have been on the medication which for me is a huge deal. Since I have been diagnosed the MS was never stable but like I said it has been for eight years.

It also has given me my life back. Okay not given me my life back because I have no idea what it would feel like to be a normal functioning person but it makes me feel like I can anything I want to do. I still have hard days, but I don’t want to know how much different things would be if I didn’t have this medication.

Those are just a few of the thoughts I have about having been on Tysabri for eight years. I will be back with a small MS update in the next few weeks as well. Let me know if there is anything you would like to know about as well.

Digiprove sealCopyright secured by Digiprove © 2016 Margaret Margaret

A Small Multiple Sclerosis Update

MS Update-August 2016

I saw my neurologist on August first so I figured I would just write down how I have felt so that I have a record of it. Nothing changed when I saw her, but I haven’t felt good for months. I can’t remember the last time I felt this bad for as long as I have lately. I am sure it was like this before I started Tysabri, but I have been on it now for about seven years, so I don’t remember how I used to feel. I know part of it is the heat and another part I am sure is because of stress. I started a new job in January, so it has been an adjustment in that sense, and I just moved to a different part of the company, so I know have to learn all new stuff which can be stressful at times.

I have been having severe headaches lately, and my sleep has been the worst it has ever been. I only sleep for an hour or two a night which I know is also contributing to my headaches. I know that there is nothing that can be done to make me sleep better because I have yet to find a medication that will help me sleep, so I just have to make due. I am so glad that I have a job and insurance, so I can’t complain about the stress of everything. I know I will learn whatever I need to know soon enough, and the people that I am working with are so friendly and helpful.

I also feel like my eye site is getting worse, and I find that I am starting to read more digital books because I can make the font bigger, so I don’t have to strain my eyes as much. I have to schedule an MRI for October, so I have to wonder if the disease is still stable. Those the few things that I wanted to share so I will have another small update after I get my next MRI and once I have those results.

Digiprove sealCopyright secured by Digiprove © 2016 Margaret Margaret

Multiple Sclerosis Update-March 2016

MS Update-March 2016 N

I had my infusion, and I also saw my Multiple Sclerosis doctor on Monday, March 21st, so I figured that now was a good time to post a small update on how things are going and how I am feeling.

If I am going to be a one hundred percent honest with everyone I have to admit that I have been feeling pretty sick most days for the past couple of months.  Which has made my life harder but is part if the game when you have diseases like Multiple Sclerosis.  The last time I saw my doctor was back in December before I switched jobs and insurance companies.  I am sure the new job along with the stress of it is part of the problem.

I also have been feeling like I going to have a relapse soon because of some strange things that I have been feeling for the past couple of weeks.  I remember one morning a couple of weeks ago that as I stood up to turn off my alarm my legs gave out. After I had sat back down for a few minutes, I was able to walk, but my legs did feel weak. I also have also had times where out of nowhere I feel like my legs may give out on me.  They haven’t thanked God, but it is such a strange feeling to feel your legs get weak and then have it go away after a few minutes.

Nothing was changed at my doctor’s appointment which I guess is a good thing. The only thing that she did was to schedule my next MRI for the 2nd of April, so I have that to look forward too. So other than all that my life has been pretty stable which is always a good thing. I hope you are all doing well, and I hope to see you back here tomorrow for another book review.

Digiprove sealCopyright secured by Digiprove © 2016 Margaret Margaret

MS Tuesday: MRI & Treatment Updates

MS

I had another doctor’s appointment last week so I figured it was time to updated on what is going on with the MS and things like that.  The MS has been pretty stable since my last appointment in June which is a great thing.   I am so grateful for that but with that being said because of the stress that is going on with my job right now my Psorisis has flaired up which is more embarrassing than anything else.

After I get my new health insurance at the start of next year I am going to look more into maybe switching treatments because I have decided that I am not going to tell my new employer about me having MS from the start.  It always hard to figure out when to tell your employer that you have MS because you never know how it will go.  I know in time I will tell them but I want to wait until I they see how hard I work and things like that.

Anyway other than my headaches coming back not much has really change for me which is a great thing considering how active my disease used to be.  I am happy that I am stable and I hope it stays that way because I don’t have the time to have a relapse considering that I have to start a new job on January 4th.  So that is all that is going on with me.  I will see you tomorrow with a book review.

Digiprove sealCopyright secured by Digiprove © 2015 Margaret Margaret

Keep S’Myelin Foundation

MS

I know I am lucky that I live around so many amazing MS doctors and clinics and even if I can’t find one in Salt Lake I could always go to Provo or Ogden to find a doctor.  I know that not all people are as lucky as me to live in such a great location and to have several different doctors to chose from.

Up until recently I have never really thought about how far people have to drive in order to find any Multiple Sclerosis doctor and even with driving that far they may not like the doctor but have no other choices and are forced to see them anyway.  I was contacted by a woman named Erica who was diagnosed with Multiple Sclerosis this past summer and she asked me to write a post about a charity that she is trying to get up and running to help people with money for traveling costs and things like that.

Here is some of the information that she sent me when she contacted me:

OUR MISSION:

To provide resources, both financial and tangible, to patients and families fighting multiple sclerosis.

WHAT WE WILL DO:

Through the efforts of extensive fundraising campaigns, private donations and grants, the organization seeks to provide financial support to multiple sclerosis families not typically covered by health insurance.  This includes travel expenses, personal comfort items, service animals, and other needs as they arise.  The needs will be met on a case by case basis as the need arises.  In addition, the organization seeks to provide work from home training, employment assistance, and scholarships for those affected by multiple sclerosis.  This differs from current organizations because many organizations focus efforts on the research and pharmaceutical side of multiple sclerosis and lack interest or focus on the patient quality of life.

WHY THIS, WHY NOW?

As a current MS fighter, the founder, Erica Durham, seeks to empower others like herself with the disease rather than be a victim of the disease.  These resources are near and dear to her heart and she understands the need for them.

My website is www.keepsmyelin.org , my twitter is @erica_gayle79 , and I have two t-shirt fundraising boosters going on now, https://www.booster.com/ms-gets-on-my-nerves and https://www.booster.com/keepsmyelinfoundation as well as a general give forward fund at https://www.giveforward.com/fundraiser/npfb/raising-money-for-non-profit-foundation-helping-patients-with-ms

I am hoping that I will reach an audience that is willing to help others as I am, any amount of giving helps.

Over the past few years I have stopped giving money to charities because I don’t like what they do with the money and things like that so when I was contacted by Erica I thought would write about it in case you are looking for a charity to donate to this time of year.  Since this is a new startup charity I don’t know what will happen in the end but I would be more likely to donate to Keep S’Myelin before I send any money to the National MS society.

I will have an MS update coming the middle of December after I meet with my doctor.  Not much has really changed though so it will be a super short update but an updated none the less.

Keep SMyelin

Digiprove sealCopyright secured by Digiprove © 2015 Margaret Margaret