Health Update – The World As I See It

A Small Multiple Sclerosis Update

August 17, 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.

Sick & Tired

April 16, 2014

I know I have written posts about this in the past but right now it is something that is bothering me again. I am so sick and tired of Multiple Sclerosis right now because I am tired of feeling like crap. Everytime I go to the doctors they are switching up medications to try and make me feel better but nothing ever works. I am just tired of everything that has to do with Multiple Sclerosis and just not feeling well.

I know my situation could always be worse which is why I don’t talk much about how I am feeling but I have reached a point where I need to write about how I feel so that I can at least get it out and off of my chest. I also know that in the world of MS I have been relatively lucky as far as the disease progression goes but like I said before I am just sick of the disease.

I am sick and tired of being sick and tired. I know there really isn’t anything people can do about this at this point but I still wanted to write this because I don’t know that I have ever read a blog where someone with MS was totally honest about how much the disease sucks. I know this will pass and I will get back to the point where the things just roll off of my back but right now I just want to bitch about it. I also want to let others know that it is okay to be pissed off about what the disease does to us.

I am also tired of people thinking I am lazy because after I get off work the only thing I want to do is go home and go to bed. I wish there was someway for me to explain to others how tired I get going to work everyday. I wish I could find something to give me more energy but as it stands everything I have tried just makes things worse. I know if I could sleep I wouldn’t be as tired but like usual my health insurance company sucks and they won’t fill the one medication that does help me sleep and I can’t afford the medication without it being covered.

Anyway I am just bitchy and sick and this is what happens when I feel like this for months on end. How are things going for you guys right now????

Mulitple Sclerosis Update

December 12, 2012

It has been quite awhile since I have written and update about Multiple Sclerosis and what has been going with that. I had an MRI at the end of August and it showed that I am still 100% stable which is amazing for me. The MS has always been very active in me so that fact that I have been stable for about 4 years or so now is huge for me. I know it has everything to do with the Tysabri and that makes it all worth it for me.

While I was at my doctors appointment she asked me is I wanted to get tested for the JC virus, which for those people who don’t know it is what cause people on Tysabri to get PML. I told her no because I won’t stop taking Tysabri so I really don’t want to worry about it if I do have the JC virus. She did tell me that if and when I do have another relapse I will have to get the test done to rule out that I haven’t developed PML. My chances of developing it now that I have been on it for about 4 years is really low so I am not worrying about it all.

Other than that there hasn’t been any changes. I still have ups and downs when it comes to how I feel and things like that but that is pretty normal. So there isn’t much else I can say. I am stable and doing pretty well.

If you have any questions please let me know!