A Life Filled With Multiple Sclerosis, Moments & Memories
Copyright secured by Digiprove © 2017 Margaret Margaret
I can’t believe we are already in March and this is the first month that I have had time to get one of these posts up. The end of last year and the start of this year were totally crazy for me, and I had no time to do anything other than getting book reviews typed up and posted.
March 3rd– Kill and Run by Lauren Carr
March 4th– The Elusive Miss Ellison by Carolyn Miller
March 7th– The Ashes by Vincent Zandri
March 10th– Home At Last by Deborah Raney
March 14th– Wooing The Wedding Planner by Amber Leigh Williams
March 15th– Her Secret by Shelley Shepard Gray
March 21st– The Cutaway by Christina Kovac
March 23rd– A Fine Year for Murder by Lauren Carr
March 28th– A Fine Piece of Chocolate by Jacqueline R. Banks
March 29th– An Amish Home by Beth Wiseman, Amy Clipston, Kathleen Fuller, Ruth Reid
I don’t have as many book reviews this year because I have had to tell authors that I can’t review their books because I have no time to read the books let alone type up more reviews. I also am looking for a couple of people to join my review team so if you or someone you know might be interested send them my way. I also will be having a Multiple Sclerosis update up in the next couple of weeks because I saw my doctor in January and I also had an MRI on the 25th of February. I also have had weird things going on that I want to share so that I can come back and look the post if I ever need to remember how I am feeling.
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 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.
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 am sure most of you know that I started a new job the first of this year. Things are super weird because I am still in the same building and I still work with most of the people that I have for the past eight years, but everything else has changed. I am not a huge fan of change, but it is something that you will have to do no matter how much you hate it.
Since I am working for a new company now, everything has changed, and I am left with basically nothing to do while watching other people do everything I used to do. I thought for sure that working for this new company would make me stress go away, but instead, it did the exact opposite. I am now more worried about my job and what not because of how things are playing out.I already have a hard time dealing with this person because of things that happened when he was brought on and everything that is happening now it is just making it even worse. It also doesn’t help that I know as of February first I have to start all over with the insurance and drug companies to get my Multiple Sclerosis medications approved and what not. The only people who have the luxury of dealing with both will understand
It also doesn’t help that I know as of February first I have to start all over with the insurance and drug companies to get my Multiple Sclerosis medications approved and what not. The only people who have the luxury of dealing with both will understand how much of a headache it is to deal with one let alone two of them at the same time. I have been doing it for the past 6 or 7 years, so I am getting to be an old professional, but it still takes days and even weeks of calling tons of people to get it all set up and ready go.
I also have things going on with my family, but those things won’t get posted on this blog because you never know who will see it, and I don’t want or need that drama going on in my life. Those are just a few of the things that are currently frustrating me. I am sure once this post goes live I will think of a few more. Maybe I will turn this into a series because I do feel better now that I got those few written down and out of my head.
What is currently frustrating you?
Copyright secured by Digiprove © 2016 Margaret Margaret