Showing posts with label Fog. Show all posts
Showing posts with label Fog. Show all posts

Wednesday, January 14, 2009

Is There A Time Frame On How Long I Have To Wait To Strangle Them?? Cause I'm Ready NOW!

You all warned me, but did I listen?

Oh no, I chose to give them a chance. I had hopes.

I was wrong. I WAS HORRIBLY WRONG!

Who am I speaking of, you ask?

I'm talking about the office staff at my new local neurologists office.

You all told me to watch out for them but I didn't listen and now I want to strangle every one of them!

As I may (or may not have, I can't remember) told you, I am in the process of switching MS Therapies from Rebif to Tysabri. I stopped taking the Rebif when the nurse from the doctors office told me to and was waiting for the call that would tell me when my first injection would be.

When the call didn't come, I started to get nervous. The month off from Rebif was hell for me. I've had two major flare ups, my fatigue is at an all time high, I'm forgetting stuff all over the place, and my body hurts like I've played a game of football by myself against the Steelers (I love Big Ben!).

Finally, I called their office and was told that they were having trouble getting the insurance to approve the medication. "That's funny" I thought, our insurance usually doesn't require approvals.

When I explained it to The Doc, aka the hubs, he thought it sounded funny too so he called the insurance people and was told that, not only did we NOT need an approval, but that there was no request for the Tysabri on record. THEY HADN'T EVEN CALLED ABOUT IT YET!

So, the hubs called my neuros office and worked his magic (and by that I mean he scared the crap out of everyone there) and an hour later I got a call saying that the insurance had "approved" my Tysabri and that my first injection would be Jan. 10th, which was last Friday.

Thursday, I got a call from a mail order pharmacy called Caremark, not the one we use, who informed me that my medication was ready to be shipped out but they had to tell me of my co-pay first. Wanna know how much they wanted???

$698.00! A MONTH!!!!!

When I called the nurse again to ask her why she didn't use our mail-order pharmacy, who would only charge us a co-pay of $50 for three months, she told me that I told her that Caremark was our pharmacy. Oh, so now it's my fault?? I guess when all else fails, you blame the patient.

Then I thought back to when I had to fill out this book of forms that they mailed me before my first visit and I distinctly remembered (well, not remembered so much as found the copy that I made of it) that I had filled out a paper telling them the information on my mail order pharmacy. I told the nurse that I had not given her the wrong information and she said, very snottily (is that a word? snottily? snidely?) that she was holding the original in her hand at that very moment and said that I had written down this other pharmacy. "Oh, really?" I asked her, trying to be as snotty to her as she was to me, "because I made copies of all of those forms and I'm holding the copy and mine has the correct information on it.

After all was said and done, it turns out that the office staff was the ones who had made the mistake.

I KNOW! I was just as shocked as you are now!

It has now been six weeks since I have been on an MS Therapy and it has been six weeks of pure hell with a couple of good days mixed in here and there. When the nurse called me the last time, I tried to explain this to her. I told her that I understood that I wasn't their only patient and I know I'm not the Jiminy Cricket on her shoulder at night, not letting her sleep. Then I tried to explain to her what the past six weeks have been like for me. I've had three flare ups, two that effected my speech and balance, and all three gave me fatigue to the point that my husband had to stay home from work a couple of days because I could not keep myself awake for more than 15 minutes at a time.

Would you like to know what her response was? Ok good, cause you're getting it!

She said "Well, through it all, it sounds like you've been getting by just fine."


Oh yeah, I'm getting by just fine and dandy thanks.

Before I go, I have to tell you something that I did. It's one of those "Everyone is already laughing at you so you might as well laugh too" kind of things.

I have an email account that I use just for an online MS support group that I'm a member of. But every time I went to sign in, I would always end up mispelling my password once or twice and it was starting to drive me crazy.

So, two days ago, I changed my password and I remember thinking "This is something I will never be able to forget".

Well, I forgot it.

And I have no clue as to what it might be or what it pertained to. Yesterday, I tried so many passwords and zipcodes that my account was locked for 24 hours and I think I'm getting pretty close to that again today!

Do any of you have any ideas what I could have changed it to? You all probably know better than I do right now!

Thursday, November 13, 2008

Just A Few Ramblings From A Foggy Mind

I swear, lately I have been in such a fog! I just wander around, forgetting things, wondering what it is exactly that I'm supposed to be doing, and always getting distracted. It's like I suddenly have aquired the attention span of a gnat. "Ooooh, look, something shiny!" and away I go. I'm sure for a lot of you who have had this wonderful disease longer than me, this is nothing new to you. For me, it's infuriating. I've tried making lists but then I lose the first list so I start a second and on and on until I've paid the Post It employees salaries for an entire year.
I don't know if any of you have been over to visit my other blog, but it's called Rambling Thoughts and I named it that for a reason. That's usually what I've got going on in my head. Just rambling, random thoughts floating around up there and I mostly just type down the dialog that's going on in my head. I just want to warn you that you'll get a lot of rambling from me. It happens. I can't help it. Deal with it. Everyone will be happy.
Oh, I wanted to say that I was surprised by the comments for yesterdays post. While I'm glad to hear that most of your all's friends have stuck by you, I was really expecting more to say that they had been through what I'm going through now with the amazing disappearing friend show. I will say that the friends that have stuck around have been so amazing through all of this and are always willing to lend a helping hand. I guess I just wasn't expecting that part of my life to change much.





In other news, I have another wonderful blogger to thank for welcoming me to the MS Blogging community. Lisa Emrich from Brass and Ivory wrote a post welcoming me and she only asked for a couple of things in return! :)

Thank you Lisa and all of you for making me feel welcome. I know that none of us asked to be here but it makes it so much better that we're in it together than dealing with it alone.

You can also visit Brass and Ivory by clicking on the link in my blog roll (which she only hinted a little that she wanted me to put her in) I saw something on there about how she's going to take us all to a carnival or something so that should be fun, right? I love carnivals!

Also new on my blog list is Ben at Did You Know That Montel Williams Has That? First of all, I loved the name of his blog since I've heard that question a lot since being diagnosed and he also left the most interesting comment in yesterdays post and this is just a little part of it:

"So at the risk of sounding all Charles Manson here...I'm gonna add you to my page as well. Let me know if that is weird or whatever, but I'm gonna do it. There aren't too many dudes out here for some reason. That's cool though, I guess I'm just the sensitive type."


Ahh, Ben you had me at "at the risk of sounding all Charles Manson". And if you haven't been over to visit Ben's page, or Bald Ben as he calls himself (hmmm, I wonder if that means he's bald?) you totally should because I did yesterday and he's really funny. And he's right, I haven't seen a lot of guys out there and it's nice to get a guy's point of view for a change!

One last rambling before I head off into the fog. I have another appointment tomorrow with another new neurologist. See, I have a neurologist at the University of Georgetown Hospital who is amazing. The only down side is the drive. It takes three hours to get there, or more if D.C. traffic is bad. The hubs and I both agree that it would be good for me to have a local neuro established if anything should come up.

I've been down this road about four times now. There are a lot of quacks out there calling themselved Neurologists! There was one who, on the first visit, saw me walking in with a limp, and said "You don't have to walk like that. If you have disability papers just give them to me. I'll fill them out." Nice.

Number Two told me that none of my symptoms were from MS. At the time I had right leg weakness, foot drop, trouble with my speech, and fatigue. #2 says that MS didn't cause any of those things. He says that I was just really stressed out. He wanted to send me out of there with some pretty heavy duty antidepressants and a lot of Xanax. Movin on.

I have some hope for this one though. A woman that I've been exchanging emails with for a while sees her for her MS and says she's great. We'll see. Wish me luck!

Now I'm off, into the fog, to look for something shiny!