Own It

I love Tyrion. not as much as Snape, but he's up there. After his speech a few episodes ago I wouldn't be surprised if Peter Dinklage wins another Emmy. But as much as I love Game of Thrones this post isn't about that. It's about chronic illness.

Lately I've been trying to look at being chronically ill, at being a spoonie, as a neutral fact. Obviously being chronically ill sucks, but the label shouldn't be seen as something bad. It's not a statement of my character. It's not something to be ashamed of. I feel bad enough because of my illnesses I shouldn't let other people's reaction to said illnesses make me feel even worse.

I am chronically ill. I am a spoonie. I am disabled. No I don't work, no I have no current plans to finish my degree, no I don't know when I will get better. I may never get better, and that's not my fault. I'm not a stay at home wife, that's just a cover because telling the truth makes people uncomfortable. Well tough, I don't want to hide who I am or pretend I'm something I'm not. It's not like people won't talk anyway.

I've been out of work since 2011. I shouldn't have been working before that. I am currently trying to get on disability but that is an up hill battle. There are a lot of misconceptions about endometriosis and I am on the more severe side of things. I also have several other health problems on top of that, some of which they are able to count and some they are not. But regardless of what the government tells me, regardless of what the lawyers say, I am disabled. And that is okay. I am learning to say that with my head held high.

Good news for once!

I recently found out one of my very good friends is pregnant. Normally this would be bittersweet at best and soul crushing at worse, but not this time. I'm beyond happy for her (and her DH), and that's it. When she told me I didn't have any of those normal "I wish it was me" feelings. It put a smile on my face for the first time in well, a while. But I was also scared, and still am a little. Unfortunately their journey has included a few losses and I would be heartbroken if that happened again. If I would be heartbroken, if I already feel like I love this baby, how much worse it would be for them is unfathomable. But so far everything is good. HCG is rising appropriately and they should get their first ultrasound in a few days.

While I am still extremely happy for them, I am beginning to feel a bit off. Like it's wrong for me to be so excited for them when I feel so negative about my sister's pregnancy. My little sister's birthday is coming up and I know she will be there and I'm dreading it. The last time I saw her she wasn't even showing yet and it was a bad experience all around. I'm actually kind of grateful my endo hasn't improved yet so I can use that to get away for a bit if I need to.

On the other hand, I feel a renewed desire to get pregnant myself. That desire is such a double edged sword, as with it comes hope that is so easily crushed. I found myself looking up information on the embryo adoption program we planned to go through last year for the first time in months. Checking to see if the prices were still the same, if there was a longer wait time, stuff like that. I questioned whether I should call them and see if there was anything we can do now. I come off lupron in May, maybe if we started now we could transfer soon after! But then I had a reality check and realized I was definitely jumping the gun. I don't even know if this will work, and I can't try again until my endo gets better. I just want my baby to grow up with my friend's baby. I wanted the same thing with my other best friend when she got pregnant and now their son is three and a half. I'm scared the same thing will happen and I'll be left behind again.

Realistically I'm still feeling all around terrible and in quite a bit of pain and haven't even been calling the people I'm supposed to call. Like the doctor to push up my appointment after being in the hospital, or more lawyers to see if someone will represent me in court. So I doubt I'm up to organizing an embryo adoption either. And I'm not sure I want to try and do that while dealing with a disability hearing anyway. So right now the plan is to wait until I can come off my pain meds and reevaluate then. Maybe I can be pregnant or at least on my way there by the time her baby shower rolls around.

Just me complaining some more

Sometimes I think it's good when I can't spend a bunch of time on the computer and catching up with my social networks. I know there was some study about how social networks make you less happy and I can definitely see how that's true. It's hard to see people talking about how awesome 2014 has been for them so far. I saw one post about how they've gotten engaged, gotten their dream job, and are moving into a new house just in the first month of this year. I on the other hand have been on bed rest, started bleeding over a week ago and no sign of it stopping yet, spent 11 hours in the hospital, got another disability denial letter so have to prepare for a hearing, am now on yet another daily medication, and my dog chewed up the only only pair of heels I like. But it's okay because I can't wear them anywhere anyway. Don't get me wrong, I don't want other people to have sucky lives. I want my friends and family to be happy. But hearing about their happiness highlights how unhappy I am. I just need to step away and if I'm feeling up to getting on the computer do something else instead.

Good Riddance 2013

2013 sucked. As did 2012, and 2011. 2009/10 were decent, either because not too much bad happened or there was enough good to even out the bad. All I dare hope is for 2014 to be more like that. They say what goes up must come down. Do you think the opposite could be true? That what goes down must come up? Like a bouncy ball let go to drop on the floor and then bounce back into your waiting palm. Then for Heaven sakes put the ball away! I don't need to be up, I just need to be level. Not down. Is that too much to ask?

I think the worst may be over when it comes to lupron side effects. I still have hot flashes, joint pain, mood swings, etc but my pelvic pain has eased somewhat. It's not better, it may not even be getting better yet, but the extra pain caused by the lupron has passed. I can get out of bed so that's an improvement. I'm seeing more chest pain flares though which sucks. Two steps forward, one step back.

My depression is getting worse. My mother has nicknamed me Killer of Dreams. I had an initial appointment with a health and family counseling group earlier this month. I saw a psychiatrist on Christmas Eve and had a terrible experience. He was very dismissive of my problems. I'm on a low dose antidepressant already for chronic pain so he just doubled it to the lowest dose used to treat depression. Of course it makes me so tired I'll sleep for 17 hours after taking it. I've just been taking the new amount every other day and hoping my body gets used to it soon.

I have an appointment with a therapist on the eighth so I'm hoping that goes better. There are so many things bothering me right now I don't even know where to start. If I have another negative experience I've already had someone else recommended.

My disability appeal is due soon and I still don't have a lawyer. I've pretty much been on bed rest the last month and haven't felt up to calling around to the other lawyers. Even if I can get out of bed now I still don't have the energy to explain everything and try to persuade them to take my case. I'll probably end up just filing myself (or getting Josh to do it). With or without a lawyer I'll probably get denied again. A larger percentage of cases are denied at first appeal than even initial application. Gotta weed out those not super serious, I guess. Persistence seems to be the key.

I hope all of you are doing well. Congrats to anyone who has gotten a BFP lately! Hugs for those who haven't. Wishing everyone a happier 2014.

Slowly Making Progress (Hopefully)

Before I get started with the updates I just wanted to let everyone know that Kohls has a coupon code (BLACKFRI) for 15% the already discounted Black Friday prices. I was able to get $213.63 worth of stuff for only $76.74! The coupon code saved me an additional $12.72. So if you plan on shopping there don't forget to use it yourself!

At some point since I posted last about the disability decision I went to see Dr. E. She gave me an exam and an internal ultrasound. I have some of the small cysts PCOS gets it's name from but no big ones that need to be dealt with. We talked about Lupron and she said it's supposed to be more like the surgery than the other treatments we've tried. I only need to take it 6 months and then I could have relief for up to five years. Of course we don't expect I'll be in that lucky group, but we won't know till we try it how long it will last or if it helps at all. I've been looking up stories online and it seems some people have it come back in less than a year. Plus AF comes back after the 6 months and I figure I'll still have pain from that even if the everyday pain is gone. I know after my lap I still had severe period pain.

During the six months I'll basically be in menopause with all the symptoms associated. I am not looking forward to that at all. The last few months on Clomid were terrible and I'm expecting this to be even worse. For the first few weeks the pain can worsen as well before it starts to get better. I'm feeling pretty miserable now so I don't even want to think about what that'll be like. Hopefully it will work and during the time I'm pain free we can do a donated embryo cycle and then just take everything out. Then even if the hysterectomy doesn't "cure" me I'll be in menopause anyway and doing Lupron again won't be as bad. If it doesn't work or the pain comes back too quickly I don't know what we'll do. We'll cross that bridge when we get there.

Of course there's still the problem with paying for it. While at the office I filled out some paperwork and they made copies of Josh's pay stubs and my disability denial to send with it. That should help prove that we can't just pay for it and we've tried to get help through other means first. They wanted me bring something saying we're ineligible for medicaid but I didn't have anything. Anyone without kids is ineligible in Florida so just saying that should be enough. They sent everything to the company but we really have no idea how long it will take to hear back. With it being the holiday season who knows!

I talked with her about what the lawyer is asking for and she agreed to write a letter for me. Not necessarily that I will never be able to work again, but that I can't work now and haven't been able to since 2011. I don't know if that will be good enough or not. She said they are going to mail it to me but I haven't gotten it yet so I'll call Monday and ask. After I get it and see what it says I'll start calling around to other lawyers if the other one still won't take me.

So yeah. That's where we are now. Not much progress, but some. Thank you everyone for all your loving comments and support. I apologize for not responding to everyone individually like I'd like to, but let's just say it's taken me all day to write this lol. I read them and appreciate them all even if I'm not up to writing a coherent response. <3

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.

Disability was denied. Have to get a lawyer and appeal within 60 days. Can't count arthritis as part of my application because it didn't develop until the beginning of July and I was "last insured for disability benefits" on June 30th. My endo is acting up right now and I'm in a lot of pain. Dr. E wants to put me on Lupron but it would cost $850. They're trying to work out something with the manufacturer. As much as it will suck trying to deal with this while in a lot of pain and on pain meds I hope that will work to my advantage and they can see just how much endo affects my life.