Sunday, January 25, 2009

Ramblings

I am always so excited when people comment on my blog, or email me to say they were reading it. It is nice to know that what I write is at least somewhat interesting to others. Many days it is just an outlet for me, a place to put my thoughts and the bazillion emotions churning around. Other days it is a quick way to keep my loved ones informed. I am always amazed when people I have never even met comment on my blog, to offer good wishes and advice. People are so awesome. So it would seem, as indicated by the kind comment on my last blog (and by further internet research) that Sjogren's is still somewhat on the table. I guess a negative blood test is a good sign, but does not necessarily mean I am off the hook. Obviously I will keeping my previously scheduled appt with the rheumatologist!

Also, I went and got another opinion on the bulging disc in my neck and the orthopaedist agreed that it was pretty bad. He could even see that it was herniated on an xray. Yuck! I started physical therapy last week and I am really Really hoping that the disc is pushing on my nerves. (Who ever thought Anyone would hope for such an awful thing?!?!) In my defense, and to let you know that I am NOT a masochist, if the disc is responsible for my arm nerve pain then that means there is actually SOMEthing I can do about it, rather than curse the MonSter for a symptom I can do nothing to cure. My left arm has by far been my worst nerve pain, so what a complete JOY it would be to kick that left arm pain to the curb.
Only time will tell as I diligently try whatever my physical therapist tells me to try and wait patiently to see what happens.

In other news, I am once again duking it out with the insurance company over paying for medication. Dr. Thrower wants to switch me to Copaxone, another injectable drug designed to slow down the MonSter. Good news is that it is said to have less side effects and I won't wake up in the middle of the night with fever and chills as often; Bad news is that it is an injection every day which is a bummer. I try not and be too whiny about it, because one of my favorite uncles has to give himself at least 5 shots every day to manage his own monstrous disease, so when I feel a pity party coming on I remember him and if he can do 5 I can do 1.

Oh and my insurance is Totally going to pay for this drug, they just like to make me jump through hoops of fire while twirling batons and singing the national anthem just to prove I Really want this medicine. So when I have jumped high enough for their liking, they will pony up. :-)

In the meantime, we are gearing up for an exciting year: WalkMS 2009 is officially on the calendar and Team Wearing Red Shoes is up and running! 6 team members and counting...but my goal is to have 30 people on our team this year, so links will be below- sign up!
Also, we have two big weddings this year and lots of wedding-related fun events. Our dear friends Steven & Tiffany are saying their "I Do's" in April, then Chris' brother Matthew is marrying our soon-to-be-sister-in-law Katie in May. I love it when people I love get married.

I am sorry this blog lacked a solid theme. I usually try and be more cohesive in my thoughts and writing, but tonight my brain is just rambling on and now so is my blog. Time to go do PT exercises before bed and enjoy my "nights off" from shots while I still can! :-)

See below for link to my WalkMS page. From there you can join the team and/or donate. We know its a rough year out there, so all we ask is enough to keep the MS research alive and well.
Every little bit counts!
http://main.nationalmssociety.org/goto/carolinekulinski

2 comments:

Abby said...

I love reading your blog and keeping up with you. Know that I think about you often, and you are certainly in my prayers!

Maggie said...

Hey Sweet Girl!!
I read your blog at least every chance I get to keep up with what is going on and I am sorry that I haven't "commented" to let you know that I am keeping track of you and the goings on with this rotten disease.
Your favorite uncle also read this and said he is so sorry that you have to inject yourself - he knows it isn't fun but still necessary for you both. He sends his love as do I. Love and prayers to both you and your precious husband.