Wednesday, August 20, 2008

Okay, I decided to take Tysabri anyway....

So this is how I came to my decision...
The doctor wanted to talk to me before we went forward with Tysabri. My parents decided to come for a visit the week of my appointment. My little girl Lucy had to have day surgery and my parents wanted to be there to help. My appointment with my doctor was Friday morning, and my mom said she wanted to attend. I wanted someone on my side because I was prepared to tell the doctor that there was no way that I was going to take Tysabri...
We get into the appointment, the doctor goes through what has happened in the last few weeks with patients taking Tysabri. He goes through all of the risks and all the other medications too.
My mom asks about the risk if I just do not take anything...the doc says that there is a 95% chancethat I will be permanently disabled from my MS if I do not take anything. My mom is speechless (which if anyone reading this knew my mom, we know Marsh is never speechless).
The doc wants me to go home and talk about it with family and friends. I was driving home and my mom started crying in the car. She said, "I just want to rock you in a rocking chair until all of this just goes away. I am so sorry that your life is so hard." That touched me in a way that I cannoit express in words. I feel like for the first time since I have known that I actually have MS, someone finally recognizes what I am going through. Sadly, my husband does not quite understand it. That is a struggle that happens to TONS of people that have diseases. I remember talking to my doctor soon after I started getting treatment for MS and my doctor told me that divorce is a complication of MS. Spouses often are not understanding, and on top of the stress of the disease, the financial burden of the treatments, the marriage suffers too. I can see this happening to my relationship with Terry. I am very frustrated with him because he is completely in deniall over the whole thing.
Terry likes to blame other things for the way thatI am feeling, he does not like to acknowledge tha multiple sclerosis is something that effects me everyday. If I am trying to nap, he acts like I am wasting the day away. (Fatigue is a horrible symptom of MS) If I forgot to pick up milk at the store, or make a deposit at the bank Terry sometimes acts like I have been irresponsible (Cognitive/memory issues are a big part of MS) If I complain that I cannot walk to the back of Target, so I will sit and wait in the car, Terry gets frustrated because he has to do it instead. My skin is numb from my chest to my toes, my legs feel like they are buzzing, I am tired beyond being a stay-at-home mom of 3 kids under the age of 4. I cannot go outside when it is hot because I lose my vision in my left-eye. I dread the heat- I wear a cooling vest so that I can go to a neighborhood picnic, or take the kids to the park. Life is a little tough, and there are days that I think I would like to have someone elses life. I do feel sorry for myself sometimes, because if I did not I think that no one else would feel sorry for me. I want someone (BESIDES MY WONDERFUL GIRLFRIENDS**STEPHANIE DEANDA**JILL LOSSER**AMBER GORE**JAMIE BUSHMAN**ANNE ROSS) I just want someone to acknowledge what is going on with me. I am feeling a little selfish- I think after the last 2 years of my sometimes rotten life I deserve to feel this way.
Back to my point- I am so happy that my mother heard form the doctor that things are not going to get better. In some way, it makes me feel more connected to her.
So I decided to go ahead with Tysabri, all the other meds offered pretty scary side-effects too. I am going to give it a shot and see what it does for me.
Yesterday was my first dose- 30 minutes of questions, 1 hour of infusion, 1 hour of observation. The rest of the night I rested as best I could....(I had to bring some bodily fluid samples to the lab for the doc***don't ask- that is another BLOG alltogether!!!)
So - I am feeling a little headachey, and super tired- like first trimester tired!! No I am not pregnant! Those tubes are tied! I just am adjusting to the medication.
So if anyone actually reads this- I am so sorry for the rambling, my tired head cannot sort my thoughts.
On a brighter note- my brother Jeff and his wife are coming for a visit from LA. They are bringing their 2 little girls JOSIE (3 years old) and NOLA (11 months). I have yet to meet NOLA and they have never met Cooper! So I cannot wait to see them.
Also we are set to close on our new house in 6 days. We are doing the final walkthrough with the builder on Friday- I am so thrilled to be in our new house.
I do not want to have to go through all of the moving stuff all over again.
Anyway, I am so excited to be starting a new chapter in our lives. It is time to focus on my family and not my MS!
be good

1 comment:

Lisa Emrich said...

Hi Kimmy,

I've got a Tysabri project underway. Please stop by sometime and help contribute some information.