Thursday, September 4, 2008

I swear I am losing it slowly

Can someone please tell me why this whole Tysabri debacle has to be such a, a, a debacle for crying out loud? Is there really no better way than for me to make several calls every day getting nowhere to try and get this medicine?

Today, there were two messages from infusion centers to return. I find out that one site doesn't have a doctor there and they haven't actually done any Ty infusions. The second person from another site was gone for the day and she "thinks" they are going to start working with Neuro #4's office to take patients.

I cannot even begin to believe that notion because Neuro 4 was adamant that infusions must take place in his almighty holy special super-office. Why would he be sending the big bucks he could be making off us poor infusionees to someone else?

I tried calling his office to check on this and they are gone as it's now the start of their weekend because doesn't every doctor's office only work 4 days a week?

Then infusion call guy number one tells me to call my insurance and maybe my "case manager" can help me. I call them and they know nothing! NOTHING. I have no "case manager". The only thing we manage to do is make me go online and find some neurologists that supposedly take my insurance. There's a list of about 6 people including current neuro 4 and neuro 1 who told me it wasn't MS and to skip merrily into the sunshine and maybe someone else could find something wrong with me in the future. There are neurologists I have seen in the past with the same insurance NOT on the list so I am thinking this list is crap.

I call the TOUCH people back to see if they have somewhere, skillfully hidden on their site, a list of local doctors who are TOUCH-certified. There's no list online but she can read me the list in a whisper and give me the numbers so I can call them and see if they can take me on as a patient, take my insurance and see where they infuse.

I scribble down numbers of people I am not even sure if I wrote the names down correctly. I asked her to speak louder but a loud whisper is louder. I asked her to repeat phone numbers and these neuros are now also all closed for the evening.

I called my PCP guy and left an added message that I am trying to get on Tysabri and the doctor I am looking for a referral to is on the TOUCH list.

Then I hung up the phone and cried hard again today! Big tears, head in my hands, angry at God at the moment type tears. I am so flipping worn out from trying to teach, feeling like dung smudged on the bottom of your shoe from MS, and trying to find someone to get me some Tysabri before December.

I know there are people out there who have it worse than this but I pray that they have someone, at least one someone in their life, be it a spouse, child, or parent that is willing and able to help out when they need it. This whole debacle is making me feel more alone than ever.

Breathe in, then out, repeat....


Joan said...

Tysabri is actually a medication that has no benefit to people with MS, but rather was designed to make people really, really crazy. It is so effective that you don't even have to inject it to go nuts. I continue to send you and Brain Cheese my supportive thoughts. I can offer no advice 'cause I'm not on Tysabri. They determined that I'm already nuts so don't need it. (GRIN)

Denver Refashionista said...

I am so sorry you are going through this. Although I can't make the calls for you or help out directly please remeber that you are not alone.

Have you contacted the National MS Society to see if they can assign someone to help you?

I hope you get the answers you need soon.

Weeble Girl said...

Joan, you made me laugh through these bleary eyes awake at 3 a.m. working on school stuff. I think you're right about the Ty.

Nadja, maybe I can try the NMSS people but I'm afraid that I may be out of luck on a Friday afternoon. We'll see though.

It's just absolutely maddening to be working so hard to try and get one medication!

Thankfully, my best friend from college sent me an awesome Hoops and Yoyo early birthday card which makes me laugh every time I play it!

SwampAngel65 said...

Aw...don't cry! I feel your frustration, though. I would try contacting the NMSS and see what kind of help they can offer. Do you have any local chapters?

I had an stupid Avmed problem with my Copaxone. I've been out for 2 days and they were supposed to deliver it yesterday, but it never came. Three phone calls, all of which nobody knew nuttin! GRRR!!! FINALLY, i got a call back and they're sending it out tomorrow by noon. Whew! I was starting to freak out esp. since we have a hurricane breathing down our necks!

Weeble Girl said...

Swampangel, hope it finally got itself all worked out.