Choosing Tysabri

I received my # 95th dose of Tysabri yesterday, and FINALLY did the bloodwork for The JC Virus that is required.

While writing My decision to start Tysabri (the 5 part series) last week, I was able to work through my emotions regarding pressure to change medications and I have solidified my decision to stay on Tysabri.  Maybe not for the rest of my life, but for now, it works.  I am fully aware of the risks associated with remaining on the drug, but this is MY Decision, My MS, and MY LIFE.  (I may have to work on finding a new doctor soon, but I will deal with that when the time comes as well.)

So to answer the question, “Why did you choose Tysabri?”

BECAUSE FOR ME, IT WORKS!  sliding into the grave

I am fully aware of the risks associated with the drug, but I believe….

I did not ASK for MS, but you play the hand you are dealt.  I would rather have QUALITY of life than Quantity.  Hell, I jumped out of a perfectly good airplane remember?  Both of my daughters are in their 20’s, and although none of us want to “say goodbye”, I know they are strong and have all the tools they need to survive in this world.  Hell, I believe they are also strong enough to help change it.  The world we live in today is a scary place.  (I think the city I live in was ranked the 6th most dangerous city in the United States.)  My point is that I am more likely to be shot sitting at a traffic light, than to die from MS or PML.  When I do die, whatever the cause, I am donating my body to science.  Maybe they can find a cure for MS that way?

For now, I am making the most of each day I have.  If I can help ONE person feel not so scared and alone in this world… I have lived.

 

 

 

Slump week- Having a bad day

Have you ever had one of those days where everything that could go wrong does?  You are so utterly exhausted by the end of the day, you can’t wait to crawl into bed and hide beneath the covers for the night.  THAT is what slump week Feels like, but the difference is that you wake up feeling that way.  Who wants to get out of bed then?

If you are going through slump week, it’s important to remember …

This Too Shall Pass.

As I was trying to think of analogies to use to explain slump week yesterday, I came up with a list of things that make most people very uncomfortable or that they dread doing.  If you are trying to explain what slump week is to someone and are at a loss for examples, use one of these?  Just remember to explain that it’s the FEELINGS, that they experience, it doesn’t mean any of these things will happen.

  • Starting a new job, and being at the bottom of the totem pole.  Not knowing the jargon everyone is using and feeling completely lost.
  • Putting away groceries in someone else’s kitchen
  • Having to call an automated phone line and after pushing 32 buttons finally reaching a live person that doesn’t speak your language, or being disconnected, or told you’ve reached the wrong number.  Now repeat!
  • Writing a 2000 word essay or blog post but forgetting to hit save.
  • Trying to start writing again and losing electricity, or internet service
  • Going to a friend’s house to borrow their computer, and they have a MAC when you are a Windows Pro
  • Finally figuring out how to use their Mac, retyping your work and forgetting to hit save again
  • Deciding you need a vacation, packing for a weekend away and not realizing until you arrive that all the pants you packed are your significant others (who is 2 sizes smaller than you)
  • While you are on vacation, wearing the only pair of pants that fit you, needing to use the bathroom in public, and the only person to ask where they are located doesn’t speak English.  While charades can be fun, it is not when the pee is already running down your leg.

I know that this list is not all inclusive, but as I said it’s a start.  Maybe it will help you think of an example to describe the feeling behind slump week.  Maybe it will help you realize that everyone has “bad days”.  Maybe, hopefully, it brought a smile to your face.

Yesterday was definitely a slump day for me.  (Yah IV on Wednesday)  By noon, I wanted to crawl back in bed and I had only been awake for a couple of hours.  I thought taking a  shower might help me have a better outlook on the day.  (I needed to shave my legs anyway and then I could say I accomplished something for the day)

So imagine this…. you are me….

Once you get in the shower, you realize you don’t have shaving cream.  Ok, you will make do with soap. Crap you forgot to change the blade on your razor (or forgot to bring it with you in the first place.)  So now you have to get out of the shower (yes you already got in and had the water running), but you forgot to grab a towel and the bath mat is in the washer…… you carefully navigate across your tile floor to the drawer where you keep your razor blades , change the blade and get back in the shower.  Only to realize, Yes your forgot your towel again.  SMH.  Again, frustrating but manageable.

If you have a SMH (shaking my head) moment you would like to share, please do!  I love meeting and talking to new people.  (It helps you not feel so alone) 🙂  Also, feel free to add my on Facebook if you want to hear more.  Remember, I am Graceful….not! (Grace Fullnot) on Facebook.

 

 

My decision to start Tysabri 3 of 5

And then this happened….

 

 

I was trying to continue strengthening my legs (pushing the time that I was out of the wheelchair) and I lost my balance AGAIN, and fell AGAIN.  I was home alone and of course I didn’t have my cell phone with me.  I tried to push myself up and instantly knew that I had broken my wrist.    By the time I was able to get to a phone to call for help, I had peed on myself and my wrist had doubled in size.    ARGH!

fallen
MS and Modesty don’t mix

I called a neighbor who helped me get cleaned up and drove me to the hospital, where they determined that my wrist was indeed broken and they would need to do surgery.

 

 

Over the next few days, I had surgery and began to have ANOTHER flare up. (maybe because of the stress of surgery?)  I don’t know for sure, but back in the hospital I went.  This is when I learned the importance of having a TEAM of doctors that communicate with each other. My new neurologist was not on staff at the local hospital, and I was back to the same doctors that I feel just throw steroids at everything.

While laying in the hospital, I made decision to give Tysabri a try. MS was winning the battle.  I wasn’t LIVING.  To be honest, a part of me didn’t want to live anymore.  I am not saying I was suicidal, though I have been there before, but if this is what my life was going to be,  I didn’t want it.  When I got out of the hospital I again went to see “the wizard” in Chicago, to start the process of being approved for Tysabri.

Some of the most important things I learned while making my decision to switch to Tysabri, and about living with a chronic illness in general are:

  1. “Dr. Google” is a scary ass monster
  2. There is no shortage of information regarding MS available online (in fact there is almost too much)
  3. While most have good intentions, most people on Facebook and other areas of the internet (myself included) are not doctors, and since their symptoms of MS and their lifestyles are probably different than yours, so is the best course of treatment for them.
  4. Doctors are just “practicing” medicine…they don’t know everything. Unfortunately, some of them are paid in some way to promote drug therapies.
  5.  It is so important that you have an unbiased friend. You need to have someone that you can share your fears with.  If you don’t have a friend that fits that description, there is NOTHING wrong with seeing a counselor.

In addition to spending countless hours on google, I found a group on Facebook for people that were taking tysabri, and made a new best friend in the process.  I could probably write an entire website on our friendship and bond over the years, but I have to save that for another time.

I am not endorsing Tysabri in any way.  I am only sharing the experiences I had, and what led to MY DECISION to begin Tysabri.  In my next post, I will share some of the experiences that I have had while being on this medication. Thank you for following!

I’m really having fun meeting new people 🙂