Sick & Tired

Sick of multiple sclerosis

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????

Digiprove sealCopyright secured by Digiprove © 2014 Margaret Margaret

A Rough Time

This last weekend was super tough for me.   I am switching antidepressants because of my eating disorder and things are not going well at all.   I had my infusion on Friday and I really think it messed with me bad.  I literally slept all day Saturday so I didn’t take any of my pills.  Then on Sunday I didn’t take them because I didn’t want to get sick.  Let me tell you never again will I miss any days of taking my antidepressants.  Now to top off the missing two days I am starting the new one.  I am a total mess.  I hate messing with antidepressants it is so stressful and not to mention emotional.   I am sit and think today of everything and have to wonder how I have made it this far in life.  I have gone through some major stuff and yet “most” days I am able to keep going and not think about all my past issues.   Although the past few days though I find that I am barely hanging on by a thread.  I find it hard to deal with all of my past issues right now.  I know when I am evened out on my antidepressants that I am okay and I can deal with the day-to-day things going on.  I sit at work with my personal life in chaos and can’t even get away because work is a joke right now.   I never before have seen when it rains it pours come anymore true than right now.

I was getting to leave work yesterday and I broke down crying because I remembered like it was yesterday all the emotions and feelings I had when I placed my daughter for adoption almost 6 years ago.  I sit here and I can remember all the feelings I felt when I saw her for the first time.  She was about 12 hours old before I even saw and held her.  When I went into the hospital I didn’t want to ever see her.  Before I had her I felt that it would be easier for me if I never saw her or held her.  I had called my night nurse for a pain pill.  When the nurse came in with the pain pill she told me that it was time to feed my daughter and asked me if I would like to feed her.  As I was sitting there in the middle of the night I knew it was something I needed to do.  After the nurse brought her in and left the room I remember looking at my daughter and crying because I knew if a few short days I was going to place her with her family.  I remember feeling so happy that she was here and perfect but so sad knowing that every minute that went by was one less minute I was going to have her with me.   Then as I thought about it more all the feelings that I had when I was signing away my rights to her came back as well.  I can remember sitting there with my social worker and two nurses with the pen in my hand and the paper in front of me thinking that if I didn’t hurry and sign the papers I never was going to be able to do it.  I remember when I was down the great weight I felt on my shoulders and still have that weight today.  I hoped then and still do hope that I did what was best for her.  I pray every day that I truly did what God wanted me to do.   I remember sitting there after I signed holding her and knowing that the time to say goodbye was there.  We were all talking and I got quiet and started to tear up.  I knew in my heart that it was time to hand her over to her family and walk away.   I remember getting up and handing her off to her adoptive dad and then turning around and breaking down because of what was going on.  I vaguely remember the adoptive mom asking if she could give me a hug and me saying no.  At that point I watched as they walked out of the room with her.  I then got in a wheel chair and left the hospital empty handed and broken hearted.

It is hard to be at work and feel all of that like it was happening yesterday.   It is hard for me to feel all these emotions and know that they will pass soon but not sure how long I can hold out for that time to come.  This post is just a lot of rambling but I hope it helps me because now it is out.  There is more that I am feeling but I don’t have the emotional capacity to write about it now.   I hope that everyone has had a better weekend than me.  As for the NES update and an MS post I will hopefully pick those up again next week!

Me & The MS

This post has been harder for me to write than when I posted Brita’s story.  I began to get sick when I was in 10th grade.  The first really symptom that I can remember is my left leg started to drag.  It would just stop working at random times.  I can remember in gym class that year we had to run the mile for a grade and I did my best but I was going to fail the class because I could run it fast enough because my leg was dragging.   We went to the doctors and lets just say the only reason they did an MRI was because my grandma pushed for it.  When that came back they called us in because they needed to talk to us.  They said that there was what they call lesions on the brain.  They show up as white spots on the brain.  They told us that they needed to do a spinal tap to rule out MS. 

The spinal tap in and of it self was a huge ordeal to say the least.  I got the spinal tap on a Thursday and by Saturday I was so sick.  I had a huge headache and was throwing up.  So we went to the ER because it was obvious that my spinal tap hadn’t sealed.  When we got the ER they made me lay in the waiting for about an hour until they took me back to a room.  After they knew what was going on they wanted to send me home because the guy that could fix it was on call and he didn’t want to come and do a blood patch.  He finally came in after my grandparents raised a living hell because I could have died if I didn’t get a blood patch ASAP.
When the results of the spinal tap came back they called us in again and told my and my grandparents and I had Multiple Sclerosis.  They wanted to start me right away on Avonex.  I don’t really remember much of the next couple of months.  I think I was still numb to the whole situation.  What I do remember is how sick the medication made me every weekend.  I took the shot on Friday nights and spent the whole weekend with flu like symptoms. I stopped taking that medication after awhile and started on Copaxone.  With that one I had to take a shot everyday and that didn’t last very long either.
I was pretty stable and not much went on until a year ago and that is when my hand went numb and it got hard to do anything with them.  Slow I have been able to use them more but it feels like they are asleep all of the time anymore.  I started on Tysabri about a year ago and so far it has worked the best but I also has a major problem with it as well.  You can develop a condition known as PML that will basically make you a vegetable.  They are finding out that the longer you are on the drug the higher your chances are of getting this serious condition. I am not sure how much longer I will be on this medication but I don’t have any other options right now.
That is my story in a nutshell.  If you have any other question feel free to ask me I will answer any questions that you may have.