A Life Filled With Multiple Sclerosis, Moments & Memories
Copyright secured by Digiprove © 2017 Margaret Margaret
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.
Copyright secured by Digiprove © 2016 Margaret Margaret
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.
Copyright secured by Digiprove © 2016 Margaret Margaret
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.
Copyright secured by Digiprove © 2015 Margaret Margaret
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???
Copyright secured by Digiprove © 2015 Margaret Margaret
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?
Copyright secured by Digiprove © 2015 Margaret Margaret