Multiple Sclerosis

MS Tuesday

I haven’t done a MS update in awhile so I figure now is  a good time to catch everyone up on how I have been doing.  I have an infusion this Friday and than a MRI on the 21st after work.  In September of 2011 the company I work for switch insurance companies which means that I had to miss a infusion and I am still trying get to back to feeling great again.  I am glad that the Tysabri does make me feel good once it gets built up in my system.  I have been on Tysabri for about 3 years or so and for me that is huge.  When I was younger I refused to stay on a treatment because all the medications that they had for MS then made me so sick.

Anyway  I have been super tired and worn out.  I know part of that is because I missed a month and another part of that is because of the stress of my day job.  It has been 7 months since they let Misti go so it is busy for me and for some reason January has been crazy busy here and when it is like this by the time I get home from work all I want to do is sleep so I haven’t been able to keep up with designing let alone blogging.  I am going to try and get all caught up on Friday while I am getting my infusion.

My hands are still numb all the time but I am starting to have times where I can’t hold on to anything because  I can’t grip whatever I am trying to hold. My feet are also going numb on and off which makes walking hard and it is just annoying.  Also at my last Doctors appointment she noticed that my balance has gotten bad and since then I have been paying attention to it and it is still bad but like all MS things it is hit or miss as to when it will happen.

That is all for now but I will update again after my doctors appointment at the end of this month.  I hope everyone is having a great Tuesday!!

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MS Tuesday-75%

***This is was originally posted on October 12, 2010.  I am going to be re-posting some of my MS posts because I have gotten so many new followers and I want to share them with my new readers.

I found a stat during invisible illness week that really shocked me but in the same sense it made total sense to me. It said that 75% of marriages where one person has a chronic illness end in divorce. I am shocked by this but I also know it is true because I am one of the 75%. When I worked at the nursing home I saw it all to often. Peoples spouses would leave them once they got sick. On the other had I also saw the husbands that stuck around. I was always in awe of the ones that stayed with there spouses.

It makes me sad that people are so shallow that they leave when things are going as they hoped. It hurts me because I was 100% honest with my husband before we got married and once he finally saw that I was sick he left a few months later. I would never leave someone because they are sick.   I know there are a few good men out there who leave but more than not they walk away.

The reason I am not dating is because I don’t want to deal with another person getting scared and walking away.  Since the MS is basically invisible well at least right now it is people can’t understand that I am sick.  Once they do finally see that I am sick they leave because they “can’t” deal with it.  I just irritates me that so many people are scared by something that affects me but I can’t change that about people.  I know this post is all over the place but it was hard for me to organize my thoughts on this post.

Digiprove sealCopyright secured by Digiprove © 2012 Margaret Margaret

Thanksgiving & My Birthday

Thursday was Thanksgiving here in the US and that is always a super busy day for me as it is for tons of people.   I helped my grandma and I also worked on designs most of the day.  I want to redo both of my sites but I have no idea what I want to do with my sites.  I also come up with great ideas for clients but I can never figure out what I am going to do with my own sites.  Oh well I always figure it out in the end.  We had my grandma’s family over and there was quite a few of them that showed up.  I never did count but we had planned on 17 or so.  Once that was over I just went to bed because I was exhausted and I didn’t even do much because the MS is kicking my butt lately.

My birthday was on Saturday and I didn’t do anything other than go to dinner with my grandparents and my brother.  My birthday was uneventful this year and I am okay with that!  I am not looking forward to Christmas for several reasons but the main one is because I am already so tired I don’t know where I am going to find the energy to do everything that goes on this time of year.  I think I will just hide!

I hope everyone had a great weekend and if you are in the US I hope you had a Happy Thanksgiving!

Digiprove sealCopyright secured by Digiprove © 2011 Margaret Margaret

Writers Workshop- 22 Things I Have Done

Mama’s Losin’ ItThis week I chose to write about 1.) Last week we wrote about what we have never done…this week write a list of 22 things you HAVE done. (inspired by Sellabit Mom).

  1. Placed a child for adoption
  2. Got married
  3. Walked out of a job instead of turning in my two weeks notice
  4. Been to jail
  5. Lived in the dorms while I was in college
  6. Started my own business
  7. Been diagnosed with a chronic illness
  8. Graduated for high school
  9. Dropped out of college
  10. Bought a brand new car
  11. Tried to reunite with my mom but she has made it clear she wants nothing to do with me or my brother
  12. Decided that I am not dealing with crap from my family
  13. Cut out family members that like to cause drama
  14. Learned to design blogs
  15. Gone to Yellowstone more times than I can count
  16. I worked at a nursing home and ended up loving every minute of it
  17. I got two cats to replace the little girl I placed for adoption
  18. I didn’t drink alcohol until I was 22
  19. I have never learned to drive a manual transmission
  20. Said no
  21. Peed my pants
  22. Wrecked my car because I wasn’t paying attention

It has taken me most of the day to come up with 22 things because I was trying not to post things that most people already know about me.

What things have you done?

Multiple Sclerosis Update

It has been a long time since I have written a post about Multiple Sclerosis and I really want to keep everyone in loop on what is going on with my health and all that fun stuff. Most of you know that I have an infusion once a month for my MS treatment. I take a medication that is called Tysabri. It is super expensive and can be dangerous but that is going to be another post. I was supposed to receive my infusion on the 23rd of September. That didn’t end up happening because the company I work for changed health insurance companies and I had to wait for a preauthorization to come through before I could get my treatment. So I show up on the 23rd and they send me home because of the whole insurance issue. For those that know a little bit about my job and what has been happening the the last 4 months or so you know that I can only take one day off a month because they have no one to cover the phones since they let go Misti who used to be my boss. So I knew I was going to have to wait a few weeks before I could take time off to go in and get the treatment once they got the approval that they needed.

My next infusion is on the 21st of October, which means that I have missed a whole month. Let me just tell everyone I have no idea how I used to live like this because I feel like crap. I always knew Tysabri was helping but I had no idea that it was helping so much. For the last 6 months or so I have had headaches and I also haven’t been in pain. Well since missing one month I hurt I have headaches and am exhausted. I literally slept almost all of Saturday because I was so exhausted from a normal week of work. I had to call my doctor and have her call in more pain pills because I was out and hadn’t need them so I didn’t bother getting a refill when I saw her last time. I feel so bad for people with MS that fill like this all the time. I am so glad that I have found an MS treatment that works for me and allows me to be a somewhat normal 26 year old. Also my hands are super numb right now and I am not sure if that is because I missed my treatment or just how the disease is acting right now.

I can’t remember if I wrote about my last MRI and doctor’s appointment so I am going to do a quick recap of all that information. I had my latest MRI in August and also saw the doctor after the results came in. According to the scan I am still stable and have been for about 2 years or so. They haven’t scanned my neck in a few years so when I go for my next MRI in February they are going to scan my brain and neck areas which means that it will be a super long and super expensive scan. I am interested to see if there have been any changes in the neck area. If there hasn’t been any changes that means I have been stable but if there are charges that means that I really haven’t been stable all this time. I hate the not knowing that goes along with having MS.

That is all there is for now. If anyone has any questions please leave them in the comments and I will answer them for you.
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Latest MRI

Last Thursday I had my latest MRI.  I get one every 6 months because of the Tysabri.  Lets just say that I know why they do it but it is a waste of time and money.  I could see if you where having problems but I haven’t been having any problems so it is just a waste.  Anyways lets to get back to the topic at hand.  I had it done Thursday and went to the doctor on Monday morning to get the results and see my neurologist.  We according the MRI it shows that I don’t have any new lesions on my brain but I am having more issues with balance lately.  Since we weren’t sure what is causing the balance issues she is having me get my necked scanned along with my brain the next time.  I hate MRI’s and adding the neck will just make it even longer!!!  It is so hard to stay still for that long.  My back ends up killing me and I always move a ton when they are doing the neck so they have to keep rescanning the same area.  Oh well it has to be done!

That is all I having going on right now.  I hope that everyone is having a good week!!!!!

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