last year i was diagnosed with having a neurological illness, at the time we thought it was parkinsons and it went into remission and evolved to what i am going through currently. the doctors still are not sure exactly what it is. we know it is neurological and a movement disorder, and that is about it. but in order to keep from rapid deterioration, loss of speech, no muscle tone, emotional attachment, the ability to walk, my heart from exploding, and my other internal organs just shutting down, i must see many drs and have my medications that help with the symptoms not the illness, that is how it goes in the “we don’t know what the hell this is, and even if we did know exactly you don’t have a chance in hell of it getting better, but we can keep you getting worse at bay for a bit and slow down the decay” box that is my reality. my drs visits are extremely expensive, and are many, at least 2 drs a month, one that is a specialist. i am also waiting to hear back from a special specialist who only works in the movement disorder category of neurology-hell i have no idea how much that would cost, more than i have at all that’s for sure. on top of just the dr appointments, i have a ton of meds i must take. one of them is $700 a month-no joke. i have at least 5 more that are $100+, a couple that are $30 and below. my medications are always changing as we try to manage the symptoms and get them all under control enough for me to function at least somewhat in a since of normalcy. i also have to get lab blood work done monthly, mri’s, nerve testing, i am waiting for a sleep study, etc. none of this is cheap. an mri is $400 out of pocket, and the cost of the labs depends on what they are looking for but the minimum is going to be at least $45. when you can’t work, this is alot of fucking money! there is no way anyone that i know would be able to pay this amount, just to keep from getting worse. i have given up the idea of getting better, that is a hope that is futile and just leads to disappointment. no point in holding out for that, but i can stay where i am for a bit until the drugs aren’t as effective or the disease progresses again. and i do hold onto that and it keeps me going. even if i have only 10 years left, i am going to make those the best 10 possible!
the other day, my sister who suffers from ultra-rapid cycling bipolar 2 with psychosis and extreme depression was melting down. she was having a very hard time, and she becomes suicidal. she had called me bc she was freaking out. she was saying something, not really sure what all it was bc she wasn’t making much sense, about living on tubes. she didn’t want to have to ever have a feeding tube or a catheter or a colostomy bag. she didn’t want to have to live on oxygen or take her medications bc they made her feel sick. she was not trying to hurt me, and i know that, but i had to remind her that is my reality in the near future. many of my systems, especially my disposal systems-gut and urinary-are not effective and medical intervention is a for real option in my life. when i told her that, she said “you really want to live that way?” of course that is not what i want! hell! the thought is wretched and scary as hell! i told her “what i want is to hold my grandchildren, see my boys get married or whatever. see them get a degree or a job in the field they want to be in. i want to know their partners and love them. i want to spend my time w amy. in the long run, i think some plastic and discomfort is worth that.” i never in my whole life thought i would say that. but when faced with death or discomfort i am picking discomfort and love and watching the product of my life bloom.
on january 9, 2014 i received a letter in the mail from the jokelahoma department of human services stating that my medical case was being denied in a review due to having income that was too high for the jokelahoma cap of income, considering my exhusband, who i am legally married to due to the fact that 1. divorce is about $1,000.00 bucks 2. why would i spend a grand on something that is only going to make our lives more difficult bc i am his medical representative 3. why am i going to spend a thousand bucks when there is no legal reason for me to spend that kind of money-i can’t marry my partner in okahoma so really who gives a shit? right? wrong! ted moved into our house when we moved here in october, 1, 2013. i have been his representative for years! he has aspergers and severe social phobia and anxiety, he has a hard time w planning and even if everything is planned out for him, he has a hard time following through. it’s all a part of his inability to navigate the world outside of himself-which is why they deemed him disabled.
after i received the letter of denial which was dated december 31, 2013 i called my worker i only had 10 days from the date of the letter to appeal, which gave me one full day to do it! i called that woman over 7 times a day between the dates of jan 9-jan 30 ! at this point i had no idea why my medical was being denied. when she finally called back she said that i was under review and needed to turn in the paperwork i had already turned in, but whatever. the paperwork was again turned in. again no answer when i called and no call back despite many many many messages. on feb 5 i finally got a hold of her. my caseworker told me what the decision was, and i immediately said “i am appealing this”. we moved ted to my mom’s as a permanent address. my mother wrote a statement verifying this. we turned in the paper work, actually amy turned in the paperwork bc i had not slept more than 2.5 hours in a span of 54 hours, but it was turned in. somehow the dhs here in lawton, jokelahoma is the most inefficient, 8 tons of bullshit condensed into one building. they lose paperwork, they don’t send out notifications, they tell you to apply on line and when you do and go through the hour long freaking application (which has to be done through internet explorer-which is just ridiculous-who uses internet explorer?) which will send you back to the front page midway through at least 25% of the time and then once you have reached the end and you are expecting your work to have benefited you by you getting medicaid the computer tells you to go into the dhs who will tell you to use the computer, apparently they give free lessons to the front desk people and the case workers on how to be the most demeaning to people who are just needing some help! the regular bureaucratic bullshit that you have to do just to get ssi when you are disabled is horrible, but it is a cake walk compare to our dhs system! so i give them a few hours to turn the paperwork over to my case worker, and then i start the phone call cycle again. the next time i spoke to her was feb 10. she told me that it looked very suspicious that ted moved out just after i was denied. i told her it’s not suspicious at all, if i don’t have medical treatment i am going to die. we moved in together to help each other and raise our kids, so if it impeded on my medical i did what i had to do to make it the way they said make it.
i had asked when i was told we have too much money, which is so ridiculous our monthly income is less that $2,100.00 for a household of 5 people, if my medical expenses were taken into account bc out of pocket with the bare minimum i spend more than the amount of money brought in by my 2 boys and myself! my medical expenses are more than rent, bills, and one week of groceries. i was told at that point that medical expenses in this state are looked at the same way that cable or phones that they are optional and not a necessity-i chose to go to the dr and incur those bills!!! we get no more assistance. our boys get ssi for their autism so that counts as income, but i can only use their money to pay for their stuff. i wasn’t going to drop this! ted and i have been separated for over 10 years so us living apart is not out of our norm. i told her to go through the paperwork on both cases going back over the past 10+ years bc my children were getting medicaid so they had paperwork on our family, and she will see that we have lived separately. she called me back and told me my medical would be turned back on yesterday-which it wasn’t…
i was very curious about all this nonsense. i had never heard of a person getting disability wo access to medical. i mean, we are disabled and need treatment no matter what we are diagnosed with. that is crazy and just plain crazy that is the best i can describe it-crazy! well, it turns out that jokelahoma is one of 10 states that fall under the category of a 209(b) state which means the state has it’s own criteria for medical and it can be different than the federal standards for disability. ok i can dig that, not that i agree but whatever. but when a state is is a 209(b) state, they must according to federal standards take medical costs into consideration! i also learned that this great state has an outstanding history of refusing to follow their own income caps, that they set, and spending down (meaning taking medical into consideration for the household) leaving many many disabled people in the dust. i am disgusted by this whole mess of hell!!!
i go to see the new neurologist who specializes in movement disorders march 10. that will cost $375 for the office visit, tests are extra. i am spending $25 a day on medication to keep liquids down. i have another 3 drs appointments in march too and i am needing refills on all my meds. if it’s not turned on today and i don’t hear from her, i am calling a lawyer who specializes in this. the state must follow federal law bc they get money for these programs and if they aren’t giving these programs to people when they set the standards which helps determine how much federal dollars they receive then they are in severe violation of federal law. i don’t want to have to go through that. i am tired. i am ill. stress is physically difficult for me. and how can i not be stressed when i know i am looking at having to decide what is more important right now-food or medicine, the electric bill or medicine, water or medicine? what am i going to do when the inevitable need for a spinal tap and biopsies come into play? i am scared, extremely afraid of what my immediate and long term health is going to look like. they are cutting my life short and taking away my ability to even have quality of life. wo my meds within 2 weeks i will not be able to talk, use the bathroom, sleep, my neurons will be damaged, my muscles atrophied, hold down food, i will lose muscle tone in my face and throat (my throat is still pretty bad and choking is a hazard), walking will be impossible, holding a cup will be impossible, i will have tremors and myclonic jerks worse than i do now. who is going to cook for my children? who is going to do laundry or mop the floors? who is going to help the boys get to their extra curricular activities or take them to the dr and the dentists and the optometrist? who is going to make sure the school district is following their ieps? i will not be physically able to do that. but it’s like cable i chose this whole mess!