When desperate static beats the silence up…


i am in transition, and not the kind of transition that everyone is hearing about in the news. I am in a place where I’m standing on uneven ground. Paul Tillich talked about this … he likened it to standing in the sand, with one foot in the sand while the other foot is on steady ground… .and the worst part is I have so much to say, so much I want to say … and I don’t know how to find the words.

Im not sure what I want to do about it. I want to talk, I want to work it out … I want to find the words to articulate how I feel but I don’t know if there are words. I feel like the silence is being attacked within my own head and I can’t find the words to even understand.

There has to be an answer … a solution… or something… at least acceptance.


its been a long time since I posted something meaningful in here… and a long time since I felt the urge to say something too … I get like this …where I feel like everything I have to say is going to end up with me either in trouble … or something else stupid. Or, like I did about a week ago… when the idea for a post comes to me I’m at work and I never remember why the time I get home what I had to say in the first place.

But i can’t sleep. I tried … really. but Ive been up and in bed listening to Bunny snore for about an hour … and then it made sense to just get up and try to say something of value… not much of value, I think … but it’ll mean something to me in the years to come … or maybe eat a donut. After yesterday I want and need a donut…

my train of thought wandered off again … or maybe I just sat here trying to think of words and I ran out of them … I run out of time thinking that I’m broken, or need fixing … and I get tired of knowing there is so much wrong with me .. then I want to write about it and I start to feel sad…

Things you can buy for $5,439.89


… lots, but the doctor wants me to spend that money on my monthly script of Xenazine…

my now FORMER neurologists office filled out the script and had it sent to:

1) an old address that I don’t really use anymore so it was sitting there since the 9th and I had no idea about it because I was expecting it to be mailed to my HOUSE where the hospital sends my bills …
2) called 4 old phone numbers that have been out of service since either 07/06 …but the hospital calls my landline telephone for all my confirmations …
3) tried to bill an OLD insurance company that use to cover me under my parents… but that’s been since 2007…
4) contacted a former employer to try to find me … that I quit 5 years ago

…you only have 10 days to be in touch with them before they need a new prescription … and it was 18 days. So, Fuck that shit… I don’t understand how people are so stupid. I can’t even stand the amount of insanity.

So the best part is if I tried to take it and ran out I’d be extra screwed… so not fair

… I think I’m just tired of reading and writing about my own problems.


fuck everything.

…I suck at fundraising….

the 3 day migraine finally went away… something else came to visit.

I don’t know what I’m going to do about the 20K I need for taz… and we need to find a new place to live… and the disability hearing is in a month and I don’t even have the money for fucking paperwork for the lawyer…

…fuck.

It’s far too early for something like this … but… Im awake, so why not.


I’ve wanted to post for days, since my last really big one…but with Bunnykins on vacation and a few other things happening I’ve just not had the opportunity for it. Kinda sad really, I like putting down into words what I think … it makes me more stable as a person. It’s one of my biggest shortcomings that I cant get this stuff out in words and then I totally explode. It’s really stressful for me … but I’m not sure what to do about it other than try to remember to get my words down as words and not just as a tantrum out of nowhere with no direction…. I kind hate that part, only kinda because I still don’t know any different…I try to be more than what I have been but it’s really hard for me. I grew up like this and I see how much that limits me. 

It’s been a week since I posted last … a whole week… a week of bunnykins on vacation… a week on adventures in the Service Dog acquisition project, an argument with a PCP, an allergist appointment, and a completely amazing concert and a trip down the shore where I actually didn’t have a major episode I just still feel like hell from it.

 

Oh… but I have to work better on trying to remember to take all this medication that keeps me going… I keep missing it. then I feel like the bottom of hell and i don’t know why Im such a wreck and it’s all a mess… but I keep forgetting… Well, there’s a good intro. I got approved by Angel Service Dogs for an allergy alert dog, his name is Taz and he’s going to be in training to sniff out aloe. I submit my ER records, and other things and they decided that this would be a good idea. In order to try to get help rasing the money we’re talking to the people at Davis’ store and their charity. One of the things we needed is a doctors note…. I called my PCP and they don’t feel comfortable helping me even with the ER records because that “doesn’t provide enough support for diagnosis” … it took them 4 days to get back to me with that stupid no. So I scheduled an allergist appointment … told them the problem … and they said ok… we get there and this one ALSO can’t help me because I:

 
1) don’t have insurance
2) have an allergy so rare he doesn’t even know what to make of me
3) don’t have insurance

he spent the whole time “playing devils advocate” but didn’t have another side to advocate for. He wants me to have full panel done but I don’t have any money to pay for it.  You know, this is the other thing that really bothers me. Stop arguing with me about why I don’t have medical insurance. It’s not like I didn’t try! For gods sake. I tried everything I could with Obamacare, and medicade and everything else but it’s all either out of our price range, or it’s impossible for me to qualify for. It’s crap, I know … and we can’t put me on Bunnykins insurance because it’s too expensive and we’re lucky we’re floating as it is. Our credit is in the toilet, the bills are behind, and he wants me to find a way to get full spectrum testing done to “rule out” whatever else this actually is. Are you kidding me. I get why they’re doing this. It’s to protect themselves. these doctors don’t want to take a risk and with the threat of being sued over this when I have an allergy that no one understands. I told my mom… she wants me to “let it go” … Bunnykins had words with her about how I can’t because this could kill me. 

That got through to her. Got through to her enough to tell me to call The Mayo Clinic. So I did… I talked to them … they said I could drive to Michigan, pay FIVE-THOUSAND-DOLLARS up front to BRING MY OWN ALOE and to go into Anaphylaxis at their clinic for them to PROVE MY ALLERGY and for me to get a letter. But that 5-grand doesn’t cover getting there, accommodations, new epipens, the cost of pulling me OUT of the anaphylaxis, the drive home … oh, or getting my own aloe, which is exposure, which means an ER trip… epipens, an ambulance… all of that. I’m sorry… I can’t do that to myself. I’m not a masochist. Sometimes this stuff isn’t worth it to me. The idea that the best way to test for an allergy that I’ve been hospitalized for is to have someone SEE it happen…I know they’re doctors, I know it’s a hospital and they’ll take care of it … but I cant do that to myself… I just cant. So I don’t know what we’re going to do about this. There’s no way… and where the hell am I going to get that kind of money anway?! 

 

Oh, the everclear concert (Summerland) was this weekend and it was amazing…. I still don’t have my pictures but I have a ton of stuff and I loved it. I just wish Bunnykins didn’t hate them so much so it would have been more fun. 

 

I had more to say … like I need to find out when my neuro appointment is … Im pretty sure the answer is tomorrow, but I don’t remember what time tomorrow and I seriously hope I’m not late because of work … if it means I have to go in earlier thats going to blow. 

 

more to follow… Im starting to get overwhlmed and i have really weird spots infront of my eyes