#IVE BEEN DEALING WITH FIGURING OUT A DIAGNOSIS FOR THREE FUCKING YEARS!!

[hotsugarbyglassanimals]

they really need to fucking . include vulvodynia as a side effect to any kind of fucking birth control and its outrageous that they dont

[friedpotat0]

its funny because the people that should care about you dont, and the people that shouldnt be bothered to care about you just waste their time over you. 

my parents dont know that i cry myself to sleep nearly every night, that i cry on the ride home, or that i wrote a suicide note and plan with full intention to kill myself before 2:30 on tuesday 10/29, they have no idea i think about my own death often or that i plan on killing myself before i turn 30, or how my body shakes every second of the day because everything is distracting or making me immensely nervous. they dont know im frustrated or irritated or that every little thing annoys the fuck out of me or how my paranoia is so bad i always perpetually feel like the entire world is against me, they dont know ive been seeing the counselor since high school and that the psychiatrist bluntly told me i have severe depression with bipolar 2 and prescribed me lamitrogine even though i really disagree with the diagnosis and wished they listened to my concerns about anxiety instead. 

people dont know these things bc i dont tell them and i dont want anyone to worry about me. im pretty good at hiding things bc ive been dealing with bad thoughts my whole life. but relentlessly i choose to believe in optimism because i believe in Allah and he is slowly guiding me through this hellscape. i hate crying in front of people, and i especially dont like have any attention on me ever (unless im playing the guitar, then shut up). i dont like being selfish and self absorbed. and i hate dwelling on the past.

its funny when ur own family has absolutely no idea whats going on because when you did tell them, when u were 14, about the suicidal thoughts and anxiety, they yelled at you and called u attention seeking, so u never told them about the weight loss or the scars or the suicide attempts. its so funny that the people that should care about you dont, and really just prize you as a trophy rather than a human being with thoughts and feelings. 

instead the counselor, my research supervisor, hell my fucking advisor has more concern over me than my own family and (certain) close “friends” ever will have in their lives. it means a lot to me that im finally getting some love and attention that ive always needed, but never realized it.

its funny how things get so distorted in your mind. you accomplish so much yet you feel like you did so little. i am so fatigued all the time, i already feel old, my skin is so dry and my body is so frail, my back aches endlessly, my lips are chapped and falling off, your feet always hurt, your hands are always cold, my mind is so worn. my nails are so brittle at this point and breaking at the edges. my skin is so fucked up id like to rip it off at this point. 

its so weird to me i wrote a whole suicide plan and suicide note and released it with every intention that i will kill myself before the end of the week but yet i am still here, very much alive and (arguably) healthy. with full intention to finish this semester. why? what happened there? and yet i still find myself looking back at that plan constantly with tears running down my face. i have a lot of tears. 

i wanted to kill myself since i was very very young. i remember when my mom would scream at me that she wishes i was dead and that i was her burden, nearly every day, and i would go to sleep crying praying to god he would kill me in my sleep. i would suffocate myself when i was 6 just to try to end it all. i barely had any friends growing up and if i did i saw them briefly in school or once every three months at some gathering. rarely did i leave the house or ever get involved in the community, except for the sports my dad would force me into. i had little social interaction, and not many adults in my life to look up to other than my mom. i never felt like her daughter, i felt like i was some sister of hers. i never had a loving maternal figure in my life, save for a few teachers i have had, god bless them. now she only loves me because i can do things for her. when she hit me she didnt love me. when she screamed at me every day she didnt love me. when she told me to kill myself she didnt do that out of love. she doeesnt remember any of these things and claimed i made it up. i feel like im in hell. she had a hard life, to be fair...but i would raise my daughter differently. i would prefer to stay away from the word “burden” when referring to my children. 

i have a good life and ill never dispute that ever. i was born with a lot of privilege. so why am i like this? who knows. you feel like your whole life was stolen from you and that you missed so many oppurtunities that you could have taken but every bone in your body screamed “no”. its bittersweet knowing that i am finally getting help but where was this help 6 years ago? how much more could i have accomplished if i had people in my life supporting me? and that i only receive this support recently? i only had two adult figures in my life and they were both my parents, my mom being very emotianally abusive and self centered with the maturity of a 6 year old, and my distant father who barely made any effort to listen to me, both who denies any sign of mental illness or health defects of any sort when the signs were clear. 

why are my parents so concerned about my marriage when they should really be concerned about me?

I feel so emotionally stunted, as if i am still 15 years old, becasuse i am finally allowed to leave my damn house. what a life i have lived, so uneventful. never allowed to leave or wear what you want, say what you want, do what you want, because you are a muslim girl. fun is banned in islam, and in my family, apparently. no sense of humor, style, color, everything is so bland and monotonous it makes you want to scream. no passion, no motivation, just the same robotic shit for 20 years. why would i want to live a life like this i ask myself? for the rest of my fucking life? id rather die. at least in hell i can do what i want.

i hate being in my skin. sometimes i hate being in my body too. i am forced to wear mutliple layers of thick makeup every single fucking day for 12-16 hours straight because my skin is that fucking terrible and ugly. i cant imagine being naturally beatiful and having clear skin and then boasting about it, on top of that. its so infuriating. i am so ugly. no one can convince me otherwise. i feel so trapped so trapped no one even knows. no one will ever really understand. i dont expect them to. i want to do so much but i can only do so little. im too frail and weak to do anything. im always so tired, and sad, to make things worse. i wish i had so much potential but i dont. im dead already on the inside, like a rotted tree. what hope is there left.

sometimes i want to leave my hometown without telling anyone and never come back. that would be fun. then i can finally have the freedom i want and the ability to actually explore my life like i should. then i can finally choose my own path to the future. but i am confined in my own mind, in my own house, in my own family, in my own city. fuck this.

now i look ahead to a hopefully brighter future. progress and healing is very slow and gradual. the only growth i should focus on is myself. for the sake of myself. and for the sake of God. i will make it i have to keep saying it, speak it into existence, because if i dont, ill wither away.

[lenixsocial]

Touched A Nerve...

Trump To Propose Medicare Cuts

Well, I haven't posted a long-form rant in awhile. But this hits far too close to home to ignore.

Let me say this: Beginning in 2007-08, I began experiencing a set of symptoms that felt like simple muscle fatigue, except that I was utterly depleted some days. I'd work 40-50 hours a week, sometimes more, selling electronics and later mattresses. I loved my job. Even after all those years, and all that crap I dealt with, I loved my job. They were always fair to me, and I gained the respect and admiration of everyone who worked there. I became known as a bit of a problem solver, a troubleshooter.

Everything seemed to be going well, then I started falling asleep on the sales floor, while speaking to customers. This happened ten, perhaps fifteen times, and then I also began to fall over, randomly. It was about this time that during sleep one night, I awoke unable to breathe. Thinking this was temporary, I tried propping myself up and all sorts of things. I finally just sat in a chair and slept. In fact, that was the only position I could breathe in (aside from standing).

Freaking out, my primary care doctor sent me to a specialist who ran two sleep studies and determined that I had obstructive sleep apnea. But that's not all... The apnea was the first diagnosis in a tree of diagnoses. Shortly after this, the specialist took X-rays of my chest and determined I had bilateral diaphragm paralysis (or for those who need a refresher: the muscle that stimulates your lungs to inhale and exhale) does not work on me, anymore. This means I have the appearance outwardly of "seething" or "in discomfort" as I use my pectoral and back muscles to compensate and force out deeper breaths (my normal resting ones are very shallow).

I continued to work. I'm a liberal, but I was brought up in a very conservative family, and in a very conservative area. My father taught me that you don't take welfare unless you need it. I felt I could still work, and didn't need it. Plus, I also figured that it'd take months to be approved, and my wife and I and our financial situation wasn't going to take any kind of hit like that. One person working is not easy to live off of. I continued going to doctors to treat these strange maladies that seemed to creep up overnight.

My specialist decided to send me to a neurologist who in turn sent me to two more, as they all had more experience than the one previous. Finally ending with who I see now. He took blood tests, ran them twice to make sure, sent them to two different labs, and came up with a conclusion. "You have Pompe Disease" he said to me. I had no idea what that was. Some vague inkling only from reading it on WebMD. I came home and did research. It's a form of muscular dystrophy, autosomal and recessive. My parents both gave me the mutated and deleted alleles that combined to give me this.

The disease (or rather the late onset variant I have) has a whole host of things that can occur such as: tongue enlargement, hearing loss, muscle wasting, limb-girdle muscle loss, paralyzed diaphragm, sleep apnea... you get the picture. Less than 60,000 people have it, and it's considered rare and an orphan disease.

But I'm getting ahead of myself here. When I first got diagnosed, I was still working 40+ hours a week, selling beds. By this point my fellow associates were plainly aware of my disability (as was management), and I was given a chair to rest on, and assistance putting stock away, and almost every other task. I felt I could still work. Then came July 31st 2016. A day I will always recall. On that day, like any other I stood at the cash register and my right leg burned like fire, then went numb. Not asleep. Numb. I couldn't feel it at all. It was in the middle of a sales rush and I couldn't move to help people. I managed to grab onto chairs, walls, doorframes -- whatever was around -- and pull myself on one good leg back to the office. I called management and had my direct manager and another one hoist me up and basically carry me out to the car, as my wife had come to get me.

Several weeks of therapy, and a EMP test (shoving needles into your body and shocking you ...yeah it's as fun as it sounds) and applying for short term disability through my employer yielded the recommendation that I be put on Lumizyme, the genetic replacement therapy that is used to treat Pompe. I felt lousy. Pretty much daily. Bored, alone, scared.

I applied for Social Security and got approved and quit my job of 14 years so I could fight this thing. There's no cure for it. It slowly turns every skeletal muscle in your body to sludge. It makes it so you lose the ability to move without aid of a wheelchair, and in a final act of terribleness, it suffocates you or drowns you in your own fluids. It's not pretty.

After three failed tests to get myself into a study (everything would've been free), I was told I needed to begin therapy ASAP. I did this. Lumizyme costs close to $220,000 a year without insurance. You also have to take the therapy for the rest of your life. Bi-Weekly. With my wife's plan it's taken down to $6,400. That's still out of my ability to pay off, so we're getting help for assistance programs. I can only imagine what this would be like for someone WITHOUT insurance.

Anyhow, the treatments are fine. 8 hour sessions sitting around making sure the genetic therapy (dispensed into the arm through an IV) doesn't randomly kill me. Then comes a week of ups and downs. The day after I feel exhausted and depleted, and don't want to exert myself much. The day after that I typically have a lot more energy, then the next four are a steady downturn. All sorts of weird pains and burning flushes, heat flashes, night sweats, cold chills, dizziness, nausea, weakness, migraines. So debilitating that I can't do anything and end up napping in my chair because it's literally all I can do.

Now, I have massive digestion issues. They thought they saw a gallstone but it disappeared and now, after seeing a GI doctor, he determined that a endoscopy would be best to see why my GERD is so bad. Nothing seems to control it despite me being on a fairly rigorous battery of control meds.

Yes, I have so much medical debt I can't keep on top of it. I'll likely have to file bankruptcy to clear all of it. My wife and I manage (if but barely) to live month to month off of SS and her checks from being a cashier 40+ hours a week. If I could go to work; trust me I would. I loved helping people. I loved fixing problems, I loved learning and selling. I loved my coworkers and customers. I miss the daily contact more than anything...but I'm wobbly on my legs, my center of balance is all off, I depend on the cane, but I can't stand without an object to lean into because I can't breathe adequately. I have strings of days where I get disgustingly sick, and some days I spend more time in the bathroom than I do in the living room. I'm a liability. I'm a fall risk, I get random sweats, my shoulders and back muscles ache so bad after washing dishes for ten minutes, there's no way I could stand up for an eight hour shift. It's piercing, gnashing, burning pain. It's muscles dying.

Ask yourself this, GOP: if you lump everyone in as "cheats", that the system is being taken advantage of, then what of us who depend on this? Who have cancer? Who are on death's doorstep? Take a step back and ask yourself: Do I have a right to take away access to affordable healthcare do I have the right to take away money that these people need to survive...to pay their massive debt they've incurred? Not everyone is a real estate magnate and owns eight golf courses and a fucking private island or a yacht.

And I'm not worthless because I'm not in that sect. You need to stop playing games with programs that don't cost you a damn thing in order to find pet projects like a xenophobic border wall or a multi million dollar arms deal. These programs are essential. Not everybody is faking, not everyone is taking advantage of it. And not every disability is the same, or is readily visible.

As for me? I will continue getting the treatments I need to continue living, despite all the side effects they're causing me and hope to all hell that I don't lose the income I'm getting that's keeping me afloat.