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My life could be a soap opera - but no one would believe it could happen.

Thursday, February 07, 2013

For those who have an idea of what I've been battling, and how incredibly difficult my life has been lately, what do you think could happen next? How about this:

My neurologist is giving up trying to stop the status migranosis. She refuses to do the standard treatment that has been used for decades because she doesn't believe in it. The treatments she has tried (4) have all failed or made the headaches or another one of my conditions worse. She has also failed to find why I keep losing blood flow and nerve signals to my extremities for no good reason and why my muscles keep giving out. She's ignored the orthostatic intolerance (blacking out frequently when I change body position) also. I think I make her feel stupid and/or she thinks I'm completely faking it because I'm not statistically normal. Of course, the neurologists in Milwaukee aren't willing to do much of anything themselves because they expect the local neurologist to do it since I can see her without having to fly across WI for an appointment.

I can no longer afford to see my GI doctor in Philadelphia and the GI doctors in Milwaukee are refusing to even consider taking on my gastroparesis (paralyzed digestive system). They do want to look further into my eosinophilic esophagitis (allergic reaction preventing the esophagus from working) but refused to give me an appointment for the testing because the doctor didn't turn in the orders. Then she all but demanded I show up there immediately for testing, no matter how risky and horrible of a trip it would be for me. When I said I would not risk my life for testing that she didn't deem that important a few weeks ago, she got huffy. When I tried to set up the appointment for late March or early April (when winter will be wrapping up and the flight on a 4-5 seat plane won't be as dangerous for my other conditions) they refused to give me an appointment because they 'don't schedule this test out that far'. Doesn't matter that I'm traveling 350+ miles, have to set up the trip with the non-profit that flies me, with family, and schedule it around other doctor appointments - I'm supposed to bend to their every whim even when they've had an epic fail.

My primary care doctor is playing games with me again. I have several mental health issues (when you have as much medically wrong as I do, and you can never again be the person you once were, let alone be who you want to be, because of your diagnoses, of course you'll be depressed and anxious!) and she's trying to claim that those are my ENTIRE problem because they can't fix the physical issues and/or she doesn't actually understand what several of my diagnoses are. Seriously, she admits she's never heard of some of them and never knew that some of the others could ever be as bad as I have them. She's trying to convince me to give up finding the other diagnoses that I was told by other specialists MUST be there. Having such a wide range of diagnoses is so unique that there must be something that's missing to tie it together. I've been told to keep looking and keep seeing specialists. She sounds like she wants me to stop and I actually have to delve into medical terminology to speak with her on something closer to a doctor's level to make it clear that I AM NOT FAKING THIS! I'm not giving up on her though, because I know she's been trying to help me; she's just so far out of her comfort zone that she can't process what's happening.

I also need to get an appointment with a vascular specialist and perhaps a cardiologist. My primary doctor all but said most vascular surgeons are jerks, so it's doubtful they'll want to deal with a unique case such as mine. Which means if I do get an appointment, I will probably spend most of the time fighting for them to just listen to me.

I have been without any income since April 2012 - after my short term disability ran out. The long term disability company denied me benefits by claiming pre-existing conditions (which is crap) and by sending my denial 3 days after I faxed (and followed with a phone call to ensure the fax was received) proof of 5 new diagnoses that have absolutely no chance of being pre-existing and can't be anything but disabling... which they promptly 'lost'. I had hoped to send in an appeal but I am not currently capable of doing it myself, so it took months to find a lawyer, then a month and a half to convince any of my doctors to help with the appeal (my primary is the only doctor who would submit anything - the rest have a mistaken belief that their notes can take the place of legal documents). In mid December the appeal was submitted and I was supposed to be approved or denied by February 1st. They didn't. They decided to delay the case for another 45 days; when I called to ask about what was happening they were snarky and told me I never gave them any paperwork about the new diagnoses - which is the paperwork I submitted 3 days before their denial. I am down to $500 to my name (waiting for nearly $1,000 in reimbursements from the state to cover my COBRA costs) and if the estimate I was given for how much I should be getting from LTD is correct, they owe me enough to pay up the $4,000 I'm behind in my mortgage, $10, 000 I owe my parents, and several thousand I've racked up in credit card bills (I never carried a balance until November 2012 - I've had my main CC since 1999).

Of course, the social security disability is in limbo, and will probably be delayed for another year or more until I can get in front of a judge.

Speaking of my mortgage, I got a letter today saying I'm going into foreclosure. My social worker said that the county should be able to help me with my mortgage since there is NOWHERE to put me and if I lose my house I'm homeless. She said that I have to be pretty much out of money and that being a few months behind should help my case. Apparently they waited so long to even consider it that now they've determined it's not worth catching up my mortgage and helping me - even though there are no open waiting lists for section 8 housing, they will not put me into a nursing home or assisted living facility, and any other place they could put me into will put me on a waiting list for a year or two if I'm lucky. So unless I get a few thousand dollars and some income soon, I will have no where to live. And anyone thinking I should move in with family, my sister and I barely speak, my parents have serious mental health problems (and my mother has been physically abusive on top of that for a large portion of my life), I don't get along well with pretty much any of my relatives, and most of them live in areas that lack adequate medical care, especially considering the demanding nature of my conditions and the obscene number of doctor appointments I have each month. I also have no friends I can move in with as most of them have thrown me away because I'm 'too sick'.

Today I also got a letter that there is now a lien placed on my house due to a nearly $1100 unpaid bill for the deck the association replaced this past summer. The postwoman said everyone in the neighborhood got the letters, so it looks like the HOA decided to not pay the contractor. Yes, they fail at paying bills and fail at making sure that driveways and sidewalks are clear so people like me can actually leave their house without risking life and limb - nothing like trying to use a walker in 3+" of snow on top of 1/2" of solid ice. They also fail at enforcing the dozens of rules in the association - even when I complain over and over and over and over so they could've probably paid for all the decks with the fines they could've assessed!

BTW, imagine this: even though I've been shelling out nearly $500 a month for COBRA, somehow my insurance was cancelled on Jan 1st with no one able to figure out how it happened, why it happened, and who/what did it. So now I'm getting phone calls from doctor's offices saying I have no valid insurance. So while the health insurance company is trying to figure out why it was cancelled, I asked that they at least reestablish it! Way to screw over a person who has a lot of medical issues and way too many doctor appointments.

As I said I have $500 to my name. If the LTD had come through I really, desperately wanted to take a trip to Covington, GA, by mid March. I'm a big Vampire Diaries fan and at least one of my favorite regular characters is leaving to go to a spinoff so if I'm going to have a chance to meet the actor (in addition to the tour of the town and filming locations) I have to go by mid March (absolutely no later than the very beginning of April). There spinoff is set in New Orleans, so they probably won't be filming in the same area. I have had a ridiculous number of things taken from me because of these diagnoses, including the only 2 real goals I've ever had for my life: to be a good wife and mom, and I just wanted this one chance at something really positive in my life, but apparently that was too much to hope for. Even if the LTD pays out, it'll be too late for this trip to have a chance of being what I want it to be.

Can someone tell me how someone with as many medical diagnoses as I have, and having to face it alone (Please, no offense - I mean in person support. Understand I do appreciate the words and support of my online friends) when even being alone is becoming unsafe, is supposed to deal with all of this? I know exactly why my mental health is continuing to worsen and why I just want to spend my time sleeping, watching tv, and wasting time online so I can distract myself from spending every single moment of every day bathed in negativity and horrible-ness.

My social worker is supposed to be coming tomorrow and she's *supposed to* be bringing someone with who will be hired by the county to do household chores for me, since I'm unable to. (Imagine trying to scrub a toilet or tub when just standing up, let alone bending over, can cause you to pass out and strong smells can make you severely sick.) I'm not holding my breath.

I know I've asked for this before, but things are worse now than ever... If anyone is willing to write to the Ellen DeGeneres Show or to anyone else who might be able to help me try to get through this time, I would appreciate it. I'm willing to take whatever help I can get, though I know I may not deserve it. I'm desperate to find SOME positive that I can cling to because I feel broken, destroyed, and forgotten. I'm terrified of what's going to happen in a few months when I lose my home and have nowhere to go... especially because there's a chance I'll have to give up my cat and he's the best family I've got.
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Member Comments About This Blog Post
    I AM SORRY, I always get to your blogs late. I will recontact Ellen with your story. In the meantime, you are still in my prayers. You are so young to have to go through so much. I have empathy for you. It is tough enough to have ONE diagnosis, much less the many you have. I agree with you, who wouldn't have mental issues when having to deal with what you've been dealt in life. It is hard to have to go through the grief and loss issues with all the broken dreams you may have. You have been so strong for so long. I just hope and pray for you that things will start to look up, that you will have more answers, and a MD who can help you. Huggs, Phyllis
    1548 days ago
  • OKIE30
    God bless you!
    1554 days ago
  • JAMER123
    I too, am so sorry you are not able to get the help you need!! It amazing me that when there is a program available to give aid, it isn't given to the most needy for what ever reason. I think the suggestion of contacting the United Way is a wonderful one! Here is a URL to help you begin your search!! Good luck. I will be keeping you in my thoughts & prayers.


    You will have to do a copy and paste as there isn't a "add a link" tab here.
    1561 days ago
    I'm sorry you are still having such problems. I'll be keeping you in thought and prayer. This can't be easy to accept and someone somewhere deserves a kick in the hind side. Hang in and try to be as positive as if possible for you. I'm here if you need me.
    1561 days ago
    It is hard to believe that you have to go thru all of this. I am sorry that I can't help you. If I had my own place I would have taken your kitty.

    I have a friend in Scotland, they do not go thru any of this crap for doctors or medical supplies. I wish you love.
    1561 days ago
    I understand what you're going through, more than you realize. It is SO hard! My husband has a lot of difficult to treat, interlocking unique diagnoses and it's nearly impossible to get someone to look at the WHOLE system when treating. Each one looks at their little specialty, and doesn't take into account anything else. The neuro ignores the gastro symptoms, the gp ignores it all and writes you another prescription, the mental health people figure they can keep you drugged into submission.

    I's tough, hun. I feel for you, and I know how tough it can be. We are simply uninsured, so we have no resources beyond a few county programs.

    The only thing I can suggest is to call 211. United Way has tons of resources, and they m ay be able to help you.

    Either way... I'll be praying for you. Because that's damn tough row to hoe, and I know it all too well.
    1566 days ago
    I don't know why life has to suck so badly. Some of the worst things I've ever experienced involved doctors refusing to listen to me or to take me seriously. I sincerely hope this is the year you find that doctor that gives you that validation you need and deserve. Even if there is no cure, that validation is amazing. The tear in my arm can not be repaired but since the moment it happened I've described it as "something tore". One of the best days of my life was when I finally got an MRI and the diagnosis used the word "tear".

    You are a wonderful person and if you ever do come to Georgia I'm going to give you a real hug!

    emoticon emoticon
    1566 days ago
    Cripes, that really is too much to go through :(
    1566 days ago
    emoticon I wish I knew of something or somebody that could help. I'm so sorry you have to go through this; I hope one of those people, whether it be your social worker or a doctor will step up to the plate and do something to help.
    1566 days ago
  • -AIRYN-
    1567 days ago
    You're a wonderful and kindhearted person and I am so sorry you're going through so much. I wish I could make everything better for you. emoticon You're in my thoughts and prayers, hun,
    1567 days ago
    emoticon emoticon
    1567 days ago
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