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.
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.
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.
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:
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.
I had a doctors appointment on Monday June 8th and I wanted to write a short update about that appointment and also an update about how I have been feeling lately. I also decided as I was writing this post that I wanted to include just a general life update because I am truly struggling with things right now. I can’t tell everything that is bothering me but I will tell what I can and maybe I will still write what is going on and password protect those posts and if you want to check them out you can email me and I will give you the password for them. Anyway lets get on to the MS update because that is the easiest and quickest part of this post.
As I said before I had a doctor’s appointment Monday afternoon with my neurologist. I hadn’t had an MRI or anything since I saw her last but she does like to see me every so often because of the medication I am on and things like that. I haven’t been feeling the greatest lately but there is nothing that can really be done about that because I just don’t feel well. My headaches are getting bad again which totally sucks because I went so long without having them or at least not having super bads one. I know that the reason I am having them is because of allergies and also just the stress of life. I have an MRI in August and I don’t have to see the doctor again until December so that will be nice.
Now on to the life crap that I am willing or able to talk about. I have no idea where to start or what I even want to say. I guess the first place to start is with the fact that the daughter I placed for adoption will be 10 this year and I am honestly not sure where the time went. It has also been a hard year this year when it comes to dealing with the adoption and I am not sure why this year has been so hard for me.
Another thing that has been hard for me this year is family things and usually I don’t really care what goes on with family members but this year that has changed for me. What is funny about it all is that what I am sad about didn’t even happen this year and to be honest I am not sure why it is now bothers me like it is. I am sure it is because of everything else going on that is making all the little things in life that usually don’t affect me hard for me to deal with right now.
Anyway that is all I can think of right now so I am going to leave it like this.
How are things going for you???
I am not sure where this post is going to take us because I just have been feeling pissed off at this stupid disease and it makes us go through. I guess what I am really pissed off about is any invisible illness that makes our lives so hard. I have been dealing with this for years and for the most part I don’t let myself get upset about the disease but lately I am just pissed off.
I am so tired of not knowing what any day is going to bring and how I am going to feel any given day. It is hard to try and keep going every day when I have no idea what is going to happen that day. I know that no one knows what will happen any given day but when you never know if it will be a good day or a bad day because of the MS it gets hard.
It just pisses me off that I am having more bad days than good days anymore. I don’t know that there is anything that can be done so I just need to accept things as they are and stop being pissed off at the disease. I know this will come in time but right now I just want to be pissed off even though I know it won’t solve anything. I hope that this phase passes soon because it is no fun for me and it isn’t fun for the people who I snap at because I am so frustrated with everything right now. Anyway that is all I have for today.
How are you doing?
Welcome to another weekly wrap-up post. I only had two other post this week. I just got busy at work and didn’t have the time to write the other posts that I had planned for this week so I am hoping to get to them in next couple of weeks. One post that I had planned was an adoption thoughts post about how I feel guilty because of my genetics and a condition that I passed on to my daughter. I also was going to do a post totally made up of pictures of my day because I thought that would be super fun but I didn’t get around to take pictures so that post will also be coming up in the next few weeks.
- This weeks quote is by Ellen Glasgow and it is about growth and moving forward in life. I really loved it so if you missed it you can click here to read it and let me know what you think of it.
- The other post this week was an MS Tuesday post where I updated on what has been going on with me lately in regards to the MS and my eye site. If you want to check that out you can click here and check out that update.
This week I saw this picture on Facebook and I loved it:
This is how I feel most days at work because the people I work with don’t understand MS and how it can affect me from day to day. Next week I have 3 book reviews coming up and a few other posts. I hope you all had a great week and I will see you back here next week.
A few months ago I posted this post where I simply posted MS graphics that I had found. I have found a few more so I wanted to post them here because March is MS Awareness month. I also hope to have an update on my latest MRI & doctors appointment post up next week.