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Toledo Trip/ Procrit Questions


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Hi folks!

thought I'd let you know that I survived my toledo trip.. thanks to some feloow potsy pals!! :)..

I broke my trip up going out there.. and i think it saved me from a sever crash.. (though I crashed out but not a severly as i am famous for doing!).. so that was a tremendous help.. and life saver for me.. and I had some relaxing fun too.. as I always enjoy getting together w/ folks!

But I had my appointment with Bev.. she is great! I have been talking to her for months on the phone.. and it was nice to put a face with the voice!!

she came in and i was laying on the table.. and the brought me a blanket in.. so I was good and comfy! Lol...

Bev anted to try me on procrit.. 9b/c i'm so sensitive to medications.. and that we havent tried this yet..)..so she was like yeah I think that we are going to try this.. and see if it helps you.. she told me that I had to find a hemotologist to follow me back home I' was like ok I'll do that.. so she went to go talk it over with dr. grubb.. and she came back in and she looked like her best friend had just died! I was like oh no!

she said that she was sorry but that my medicaid will not pay for procrit... I was so upset.. I was trying to fight tears that wanted to run over..I was so disappointed so was bev.. .. so I talked to her about my primary insurance.. then i told her that I'd looked into the co-pays and stuff.. and that thtye wanted over $500 a month in co-pay for 4 injection!! I was floored at that amount of money!.. I was like Bev that would be allmost all of my SSDI check!!.. she was like yeah you cant swing that..

such a disappointment..but.. I wont stop till I find a way to atelast try this med..b/c i cant help but think .. what if this is the one med that might help me...I will always wonder if it would ahve helped.. so I'm going to call the medicaid office and soical service organizations-- anybody who will listen.. and see if there isnt some way that I can atleast try this to see if it would work.. appeal to the medicaid board or something..

how can people sleep at night ya know? knowing that they are robbing people blind of medication that might very well be life saving for them?? I dont understand this..

But any thoughts or suggestions on how i can battle with these insurance company or the higher ups..(like BUsh :D ) would be appreciated!!

I talked with Bev about my paralysis spells.. and how often they are happening.. and all the crazy things that are going on.. my incredibly high heart rates.. BP all over the map.. and the million dollar question why am i not getting better? despite the numerous medical interventions that we have tried in the past 3 yrs...not to mention numerous docs other the them that i've gone to see..

:) ..she told me she doesnt know why..she goes you are very special..(i was thinking.. I dont want to be special!! lol).. that i am a pioneer in this stuff that is happening to me....that for wahtever the reason is..there is a reason why i have pots so badly.. and that there is a reason why i dont respond to treatment.. and that i'm paralsising and stuff.. and feel like there are bee's stinging me...UGH.. and the pain is unreal..

So I'm going to start Lyrica.. at the lowest dose possible.. adn she upped my clonidine.. they cant up my betaxolol..b/c I am allready on the highest dose that you can be on... :) i ddint know that.. i was like wow.. so why am i still getting these high tachy spells... b/c i'm special! lol..but no really. it is baffling.. they got the faxes of my heart moniotr recordings.. and she showed them to grubb.. and she comes back in and goes well there is one good thing.. that i'm not having dangerous arrythmia's.. i just beat incredibly fast..

Oh yes a good thing.. they gave me a standing order to get IV hydration as PRN when I need it so that maybe I wont have such a hard time getting it when I need it..both she and dr.g signed it.. and also theya re goin to write me a letter explaining waht dysautonomia is and how it afects me.. and that its real!! and that pots is pots dysautonomia not something to do with my ovaries! yes a dcotor actually ac=rgued with me one time that my pots was an ovary problem..not dysautonomia!! HELLO!! to all you men out there with pots.. did youknow that YOU had ovaries too!! LOL.. my god the ignorance I tell ya!!

but yeah.. so I got home and am trying to set up Iv infusion.. and I found a home IV infusion thru the home health agency that I had last year.. theya re fanataastic.. well my insurance will not cover in home infusion!! but she told that there is a Infusion center right on the bayfront aht i can go to. and its much more comfortable setting all theway around.. then the ER.. and its only 3 blocks from my home that i'll be moving into!! so its is accessable!!

now here is the problem.. my pcp wont work with the order b/c she is afraid of what will hapen to me if I get over hydrated. she does not want to be responsible for waht will happen to me if I'm over hydrated.. which I understand where she is coming from.. BUT.. t his is the only thing that helps me..!! my god the only thing that offers me any kind of relief!! not even sleep is a for sure relief..b/c i'm sysmpotmactic in my sleep aswell..

SOOOOO.. i tried reaching my local cardio guy.. and I hope to hear back from the come Monday.. and hope that they wiill work withthe order.. I would just call grubb's ofice and have them set i t up but they wont accept out of state orders there has to be a local guy on board... so pray that I can get things worked out pls!!

Oh yes.. they are also sending a letter to my PCP requesting that i have a swallowing study done.. and an MRI from my head (skull) to my butt talbione area.. as I think its a key to some of my problems..been alot of trauma to the spine.. and I'm intersted to see waht this is going to show..

I fugred that i''ll get the MRI done.. then ship it off to the chiari institue or milwaulkie for futher evaluation..

so things are mvoing slowly fo rme.. and even though I dont have answers or a solution yet. I'm trying to keep my witts about me and my faith.. and keep a strong support system aruond me. and this fourm defiantely does that for me!..

But I made it home.. I had a rough time on the bus ride home.. but got home in one piece,, and had to really bad freaky spells during the trip..as I feared that I ight have.. and i havent crashed to badly... I'm extremely tired.. and have pretty much slept since I got home. and slept very well at that!! YEAH I lvoe my sleep!! me and the cat have been sacked on in bed snoozing!

allrighty folks i'm signing off for now!


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HI Linda,

Thanks for the update. I was worried about you travelling all alone. I am glad no major incident happened.

I am glad that things are moving and that you are getting more tests. I hope that they will find soon what is wrong with you.

Good night


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I'm glad you survived your trip and that you had support along the way.

You remind me of myself when, every now and then, I sort of look skyward and say, "I didn't ask for this!"

No, you didn't ask to be this special, I'm sorry that your case is so tough. I'm glad you got to talk to Bev (and get input from Dr. Grubb.) It stinks when you have to battle with insurance and you are on a fixed income.

Best wishes on any new therapies you try. Keep us updated.

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