Today is blessed, but I really need some help.

Today is a beautiful day.  I woke up and I am alive and kicking.  So I am grateful.  But today I am overwhelmed.  Today I am stuck.

Here is a current list of KNOWN medical issues.

*Myoclonus dystonia
*Type 2 diabetes
*high cholesterol
*metobolic syndrome
* Unknown bowel problems (some due to the M-D some think I may have IBD) But there's scarring in my intestines.
*PCOS
*abnormalities in my red blood cell counts.
*Tear in rotator cuff
*Hital Hernia
*Fatty Liver
*Kidney stones
*Migraines
*Depression, Anxiety, OCD
*Tachycardia
*There's a slow growing lump on my thyroid. -- But not thyroid disease.. (so they think)


And if someone tells me that these can be cured by changing my diet I will hunt you down and bite you.  I Don't eat fast food barely ever.  I eat mostly Vegetables and meat.  I eat a TON of salad and I eat fruit.  The only down fall is I drink a soda or 2 a day.  Like that is literally the worst thing i put in my body.  I am human sometimes I give into a sweet treat but that's far and few between, and lately its not happening at all because I am MISERABLE.  Anyway..

These things are happening while most of these things aren't bothering me the last week my heart rate and guts have for sure been and issue, and my movements just keep getting worse and worse.

My doctors take SO LONG to do anything.  My caseworker is TERRIBLE.  I don't know why I have her she literally tells me every time I call her that she doesn't know what to do about whatever the problem I am calling her for.  Most commonly pushing through referrals.  This is her JOB mind you. I cannot request a new one from anyone but her according to the mercy care supervisor.  I have to call my caseworker tell her I want a new one then wait 2 months.  SURE let me just do that and have that woman do even less than she already does.  Not to mention she is just highly offensive in the things she says sometimes.  So great she is useless. They send me letters telling me all the time about how I am classified under "catastrophic care"  But then she tells me I don't qualify for long term care because I can still walk and speak.. what?  And hello...is questionable if you can call whats coming out of my vocal cords some days as speaking.

My Neuro is good,  But hes hard to get into see and sometimes I feel forgotten about but none the less I like him.  I also Like my PCP but hes also impossible to see and hes a very far drive for someone that cant drive on the bad days.  All the other doctors don't communicate at all with each other, and honestly some I feel have straight up given up finding answers because it wasn't and easy answer.

I think I could deal with all of these things individually Except for they all make the biggest monster unbearable.  My Myoclonus is out of control.  I am exhausted. I was waiting for an allergist referral I finally get it and call them.  they had me send over the materials I need tested to have the DBS put in and told me I may have to find some of these myself.  WTF?!?! Please tell me how am I supposed to find some of this stuff... I don't think I can even pronounce all of it.  So Okay.. fine I take a deep breath.  Medtronic does NOT supply allergy kits anymore for their devices... IDK why its really terrible and I am just astounded by the whole mess.   They had once told me they could make a device not coated in the silicone I was allergic to they could cover it in polyurethane but they then told me they wouldn't because it cost to much to go through trail with the FDA. So fine.  Now it's 10 years later they want to retest me to see if I still have the allergy because DBS Is still my best shot at a "normal" Life.   Then the lady on the other line drops the other bomb.  My insurance probably wont cover the testing unless I have a anaphylactic shock reaction to the material.  I'm sorry but WHAT planet am I on? My body rejecting a medical implant isn't enough?!  I said so what are my options? she says that if I have the Implant and start having a reaction then seeing them would be covered... Uhhh.. super.   Or I could pay for it out of pocket.  SO I am probably waiting another few weeks to even see these people just for a consult because they have to find if they can find the material and if they can't then I have to.  THEN I have to wait and see if my insurance will or will not deny it. (at this rate I am going with will because they are still denying my heart medicine)
OR Option two I could say F- this and go ahead blindly and hope that they will cover another DBS that I will probably have an allergy to and just hope that they have a way to treat that once it's in.

I NEED HELP. I am tired.  I am tired of fighting... and I feel like I am drowning.

 I want to get into the Mayo Clinic.  They would look at all of me as a whole and not each problem.  They don't accept my primary insurance though.  They accept my Medicare but I have been told its impossible to get in.  I don't have a clue how to even start to go about that process and asking my caseworker would be as helpful as asking my dog.

Other things people have suggested to me is to get a Doctor in the UK to see me they are far more advanced in M-D than in the states.  ( I also need genetic testing that my insurance does not cover, as there may be more than one underlying condition)

Going to a news place and getting them to pick up my story.  ( I don't know what to say to anyone or how this would help except maybe a doctor would say I would love to take on your case and figure it all out and maybe be my godsend)

Going to Medical schools and getting them to take on the DBS issue since they are doing experiments all the time getting them to help figure out a way my body could handle the implant.

These all sound like grand ideas but I don't know where to start or how to with any of them.  So I am asking for information, names, places I could write... ANY information.  I am willing to do the work.. I just don't know WHAT to do.  Who to contact, or how.  You can comment here.. Or on my Facebook if you have ideas or Write to me at my GMAIL at Caseynoe@gmail.com

Thanks for listening.