Monday, October 29, 2007

So You're Saying........

I chased up the the Neurologist, the "specialized pharmacy" part of the insurance company, the Avonex case worker called this morning. I didn't realize that the treatment falls under the "specialized pharmacy". Was that weird! , "Oh, Miss, I'll have to transfer you to the specialized pharmacy" And I'm still not sure what's going on. I just want to get started so I can see how this will affect me before I get started on my 2 day weekend program. And so I know whether I can stab myself or find a neighbor to beg or whether I'll have time to make it home from work, if someone at work can do it for me. What a sissy I am, I keep thinking. I told my husband, that he knows that if I have to do this myself , I'll sitting in the john or laying in the bed balling whilst trying to give myself this injection. Geese! What a sissy. How do y'all do it?

Sunday, October 28, 2007

Back To Work Today

Have to go back to work tonight and then Tuesday and Wednesday nights as well. A weekend to Kentucky to Georgetown College with our daughter to check it out and then home. I will start my two weekend shifts the next week. Every Friday and Saturday night. Still haven't received the Avonex yet. Hoping I can get started soon , so I'll know how it will affect me before starting back to work. Looking forward to that , Not. Hope it doesn't make me too ill. Not sure I can inject myself. The very thought of it. Ick. And I'm a nurse. Everyone says well you're a nurse. you should be able to do that. Well, it's quite different on someone else rather than yourself. Like self mutilation. Anybody with any helpful hints out there, I'll gladly take into consideration.

Friday, October 26, 2007

Thank-You All

Hey, I'm having a pretty great day. Feel well. Have been able to thoroughly house clean, including de-scumming my daughter's shower room and touching it up with some paint. Laundry done and put away. Just a quick tidy up of the kitchen and all is well and I believe that it has allot to do with the support I've received from all of you out there in just a 24 hour period!
Thanks, All

Thursday, October 25, 2007

Take The Poll, Please.

I put the poll to the right because I recently read someones blog and it seemed that they were only diagnosed a year ago and are already in a wheelchair and it freaked me out.


It's amazing how nonchalant everyone I've had to deal with this in the medical profession is. That is the Neurologist's office and the Avonex company who promises to send out a Nurse to teach with the drug. Oh we'll be contacting you in about 3 to 4 business days. Has anyone else experienced this during diagnosis? They have no follow up appointments set up and said that I don't need to unless I have problems with the Interferon beta 1a and no lab work until I've been on it for a month. Is this how it all begins? My regular Doc has been a saint. She has ordered me some Valium so that I can muscle relax at bed time and promised me that if I was a big enough baby about giving myself the IM injection, she would order me some emla cream. See I am an RN, but a critical care pediatric one. However, it does baffle me how flip they all are. I've gone ahead and changed my work schedule to accommodate this MS, which I think should stand for monkey shit. Now let's just get the damned ball rolling!

Oh By The Way

And oh by the way, Having an MRI is a noisy claustrophobic treat that for me was unpleasant even with Valium on board. Unfortunately for me and those who have to stick me, I have crappy veins, because I had to have dye injected in me for these MRI's. And they take over an hour of lying still in a tiny tube with noise and vibration and having your head and shoulders strapped down. Yeah, fun, too. Although, I can think of worse tortures.

Hurry Up & Wait

Avonex. It's a once a week intramuscular shot of Interferon beta 1a which from what I hear makes you quite ill with chills and flu-like symptoms for months until your body gets used to it, if your body ever gets used to it. I'm still waiting for the drug. You just don't take the prescription to the pharmacy and pick it up. You first must sign your life away to the company that makes Avonex and your Neurologist has to fax the script to the company and they have to fax the script to your insurance company who then mails it to you with a bill, I assume. Of course I've had to be pro-active with this and call the Avonex company and the neurologist and my insurance company and I guess now I have to wait. You have MS, so deal, you're on your own. Kind of like being shoved off the plank of the pirate's ship in the middle of the ocean without the muscle strength to swim to shore. A whole lot of fun!

Getting Diagnosed

For me, It started with subtle changes. Things I attributed to just getting older. Muscle stiffness, walking slower than my family on outings Having to use a bucket or step to get on my horses to ride. Being off balance on occasion. Well allot and just blowing it off as me. Taking longer to peel myself out of the car whilst everyone else was waiting for me to get out. Slurring my words and having trouble getting my point across and expecting everyone else to read my mind ( I attributed that to working 12 hour night shifts three times a week ). And then this year after a lovely labor day weekend at our local county fair with my husband, I woke up with an acute vision change in only one of my eyes, in which I initially blew off again as a sinus issue, eventually I was forced to the opthomologist and a thorough eye exam and follow-up which then led to the first of my MRI's, which showed lesions that looked like MS with clinical correlation and a Neurology Consult and now a second MRI of my c-spine, first one was of my brain, which also showed lesions. And the talk with my Neurologist brought me back to at least a year of "flare-ups", at least two others, one in January of 2007, in which I woke up with extreme and annoying numbness in both arms and hands and the classic MS symptom in which one bends your head forward and you get an electric shock type feeling that runs down your arms and finally a weird month of horizontal vertigo in which I felt like I was walking around in a hamster ball in December of 2006. All those episodes and correlating MRI's , "Callie, you have MS, and I'd like to treat it with Avonex."

Multiple Sclerosis

What a shock diagnosis at age 44. I've created this blog for those of us who now suffer with MS and our family members to connect.