Tuesday, March 8, 2011

Warning for language

First - Friday I got a voicemail from the Dr's office. Here it is. The voice mail basically says "Hey, I'm calling about your appointment on the 8th! The OTHER Dr you originally called about has some openings before June, so if you'd like to reschedule to see him, call us!"
Well, I was fine seeing my old Dr and I was out of meds, so I didn't call to reschedule.

I didn't sleep good at all because I was so anxious. I got up and left the house at 7:30 and then sat in traffic for almost 2 hours. 

I had lost my insurance card but my regular Dr's office was going to fax a copy over, so around 9:15 I called the new Dr's office to make sure they have it.

Except the chick tells me my appt is the 22nd.
Keep in mind I dont do confrontation because I get really freaking upset when I think someone is rude.

Me: uh no, its today and I have the voicemail to prove it
Her: No, it's the 22nd

Me: NO! It's really not.
Her: Well, that's what we have. Our receptionist left you a voice mail rescheduling!

Me: I've had to keep my son out of school today, my husband has to miss work if I'm not home in time, and I've been in my car for 2 hours. You need to fix whatever you've screwed up, because I can't do this again on the 22nd. I'm out of meds and I need to be seen.
Her: Well, I can't help you. Your appointment is the 22nd. Dr Flinkenstein isn't even here, he had to push his start date back to May.

Me: Well, surprise! I'm at your door so someone is going to find an answer for me because this is freaking ridiculous. The voice mail says NOTHING about rescheduling and when I come in you can hear it yourself. /hangsup

I go in and tell them I want to speak to the office manager. He comes out and I ask him if we can step outside, and I tell him there is ZERO CHANCE he wants the other patients to witness this.

I get outside and I basically lost my shit. I was crying, I was angry and I apologized to him, too. I told him I knew it wasn't his fault but I went through a lot of bullshit to get here, and he can listen to the voice mail himself - but this was NOT MY FAULT and I was sick and tired of being dicked around for the past 18 months and I was DONE. And on top of that I'm being told this is somehow MY FAULT by the scheduler and NOTHING can be done to help me? No f---ing way.

He said he understood, and I would be seen. He said he would also find out what happened etc etc

So, since I had to be worked in I basically say in the office for 3 hours waiting to be called back.
I finally see the Dr, and without me even mentioning it, because I wanted to see what his first impression was - he said "Ma'am, you have a disease called Behcet's" 
"Yep, I pretty much already self-diagnosed myself with it since no one else could figure out what's going on"
Anyway, we talked about it for a bit and we're starting me on a cocktail of mylan, cholcrys (double last time's dosage) and double the prednisone and a steroid eye drop. (which is all $300 with co-pays but that's another rant)

I drove home and brought lunch and spent about 10 minutes with Jonas and Jason and went to go pick up my prescriptions - which the Dr had called in. 
I get to the pharmacy and they don't have them. So, I sit around and wait and they keep telling it will be just a few more minutes so I say screw it and read. 2 hours later they have all but one ready, so I get them and go.

I get in my car and need to go to Target and I just broke down.

I am so grateful to know what's wrong

But I had hoped I was wrong.

I was hoping he would tell me it was something that could be fixed or would go away. Behcet's has a high risk of Coronary/pulmonary arterial aneurysm and the mortality rate if that happens is exceptionally high.
Blindness is a huge risk, too. Thrombosis is a huge risk.
There will almost certainly be neurological involvement within 10 years.
I'm not a walking time bomb by any means but it doesn't help me NOT feel like one. I just wanted it to be something - not severe. 

I am so f---ing mad it took this long to find out because some of the damage is likely irreversible. I am just angry as hell in general.

I spent the next 2 hours in my car basically sobbing like a baby. I feel better now but I just have this sense of impending doom or something. Idek. I just feel broken and devastated and done.

Monday, March 7, 2011

Thou hast been warned - I am feeling super posty today

So remember when I made a post about how rheumatologist number #734 was one I liked and then stopped taking my insurance?

Well, I found a new one. An hour and a half away.

They didn't have appointments for 4 months but! They had a BRAND NEW DOCTOR IN THE PRACTICE who could see me March 8th!
I'm like ok - whatever. I don't have a choice.

The new Dr? is the same one I liked who closed shop in the middle of the night and mailed me a "Oh hai, we're closed. Good luck!" letter.

Saturday, March 5, 2011

So I've got a real problem. Not a REAL problem but a real problem to me.

I pretty much exist on these.

I eat them 2 if not 3 times a day. (I boil them in chicken broth and then save the chicken broth for a day or 2 and re-use it)

My store stopped carrying them. They have the sticker there but they've not had them in weeks.

I just ate m y last box.

/cry cry cry