Tuesday, November 19, 2013

Update on Disability

So I talked to a lawyer, not sure if it was the same one I talked to several months ago since there are four at the firm. It didn't go well. She said that endometriosis is not a disability and I would need a letter from my doctor saying I would never be able to work again for them to take my case. I tried explaining why that was unreasonable, how the requirements say you just have to prove you have been or will be out of work for a year, but she didn't care. I was so upset I hung up on her.

I don't know why a doctor would ever sign something like that unless you were brain dead or low functioning autistic or another severe mental disability. I'm 25 years old which means there are 40+ years for a miracle to happen that lets me work. I love my doctor but she's not a psychic and doesn't know what the future holds. All we know is I can't work now, I haven't worked since spring 2011, I really shouldn't have been working before then (and I think I could get a statement saying so from at least one previous employer), and I'm not expected to recover enough to work anytime soon. That should be enough. I am seeing her on Wednesday so I'll ask her but I'll be very surprised if she agrees.

So what now? What can I do? Not much. We are hoping we can get 6 months worth of Lupron for a reasonable price through the manufacturer but that's not a long time. My DH doesn't graduate until more than six months from now and who knows how long it will take him to get a job paying enough for me to get insurance. Even if the Lupron does work and I started looking for a job the moment I started improving it would take me more than six months to find a job that would get me insurance. My work history is atrocious, I don't have any references since everyone knows I shouldn't be working, and it's hard enough to find a full time job as it is when you don't have any qualifications.

Plus endo isn't my only health problem just the worst and longest lasting. My arthritis would keep me from doing the things I've done before (retail, food service, daycare) because you are required to lift and carry things I cannot. My chronic chest pain is controlled through medication but only if I remain basically sedentary. My memory has been getting worse and worse, I think partly due to my conditions and partly due to medication side effects. Sometimes I don't even remember I let the dogs out until an hour or two later when they start barking and scratching at the door. I can't tell you how many loads of laundry I've had to rewash (sometimes more than once) because I forgot I started them and never put them in the dryer. So I think that would be an issue.

In any event I don't have any hope that the Lupron would be a permanent fix anyhow. I don't know the success rate but the medication I'm on now is supposed to work for like 85% of those with endo. At this point I think there's a very good chance even a hysterectomy won't work for me. I know the aygestin is doing it's job of keeping the hormones low that are responsible for thickening the uterine lining. I've had some bleeding on and off over the last few weeks but it's always very, very light, usually just spotting. Even during my worst cramps where normally I'd be going through an ultra tampon and a pad in half an hour or less at most it could be described as a light flow. 10% of those who have a hysterectomy still suffer pain and I believe I will be in that 10%.

Of course we won't know until I get one. The thought of getting a hysterectomy before at least trying donated embryos is devastating, but it would be worth it if I was pain free and "cured". But to go through that, give up hope of having a child, and still be just as broken afterword is too painful to even think about. The lawyer said it would help my case if I did get one, of course. Other than the emotional trauma involved one problem with that is we still couldn't afford it. The reason I want to get on disability is so I can get the medical care I need. The actually money you get would be nice, and I won't say we don't need it since once you discount DH's financial aid we are below the poverty level, but I don't really care about that. If I had insurance or medicaid I probably wouldn't have even applied again. So even if a hysterectomy would help we can't afford to get one.

So after the six months of lupron are up (if I can even get it, we still don't even know that) I think our only real option is to move. I don't like Florida and have wanted to leave anyway but moving isn't as easy as I'd like it to be. We have a support network here. My mom helps us a LOT and things would be much harder without her. She would move too but she's stuck here until my sister gets older because our dad would have to give the okay. I'd have to find a new doctor and I doubt I'd find one that helps as much as mine since we have a ten year relationship. The closest state that is expanding medicaid is over 500 miles away but we'd probably move even farther since it's just not a place we want to live. Then I could get treatment for all my issues that are going untreated now, I could get lupron without spending $850, I could get a hysterectomy, I could get laparoscopies every year if I need to, medical services and prescriptions wouldn't be our second biggest expense category after the catch-all "merchandise".

But I don't know if we'd even be able to move. Moving still takes money we don't have. So really I'm just looking at being in pain and medicated for the foreseeable future. I just feel so depressed and hopeless. I really should go see someone about that but again, can't afford it. I'm not suicidal but I do feel like I'm being told my existence is worthless and actually a negative, since I haven't furthered the human race through reproduction nor am I a productive member of society. I don't deserve help because I just take and have nothing to give. When looking at the big picture it would be better for everyone if I just wasn't here.

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