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Had an infuriating experience at the MHC this morning & as a result will no longer be using medication in my treatment. Having Bipolar Disorder I am concerned about this, but their policies have shown me that the “professionals” do not consider me taking this medication to be very important. For the full story, I am just going to c+p my post to the psych central forums.
Begin c+p:
I have been going to the local MHC here for a few months, since I moved home & actually managed to get in there (which is another story of incompetence itself). I’m in a rural area & on SSD, but my Medicare won’t kick in till next year so I have no insurance till then. I am on SSD for my Bipolar, so mental health treatment is the most important thing for me right now, as I previously worked as a professional & hope to get back on my feet & able to return to work. The MHC is a half hour from me & even if I had insurance there is nowhere else here to go without driving closer to an hour.
So, I have been on generic Lamictal for the last few months, & we have been working to get the dose right. The nurse has only been prescribing me enough medicine at a time to get me through till my next appt. I already had to postpone this appt due to having to be in court last month, so I had to move my therapy appt back, & they wouldn’t let me see the nurse till I saw my counselor. I skipped a few pills here & there, so I had enough to get through till today without running out. So today, I was running late. My clock showed closer to 5mins late, but the clock in the reception said 10mins which is the cut off, so they would not let me see the nurse. The next appointment I could get was a month away. When I mentioned I would need some more meds to get me through till then, I was callously told I couldn’t have any more meds till I saw the nurse.
I left hurt & confused. I know I was late & I understand needing to reschedule, but I don’t understand why I have to go off my meds for a month over 10mins? I have been very regular about keeping my appointments. I have been late once before & had to reschedule a therapy appointment. The last time I was there I got called out because I had to cut my hour therapy appointment down to half an hour because my gas light came on as I pulled up & I need the rest of the money to get home. I never got to talk to the nurse, this all came from the receptionist.
After leaving I decided I was not going to do the bouncing on & off medication thing. By the time I get back in to see her, the lamotrigine will be out of my system & I’ll have to start all over building back up to my current dosage. So I called the MHC & told the receptionist to cancel my appointment, I was going to be going off my meds permanently & will no longer need to see the nurse. I also asked for the nurse’s voicemail to leave her message letting her know why I would no longer be seeing her. I was told she doesn’t have voicemail & had to leave a message with the receptionist. I have yet to hear from her, but there’s still a couple of hours left in the business day. If she calls me back I’m hoping to get her to either call me something in or advocate on my behalf, & on behalf of others in the same situation.
It’s either important that I take the meds, or it is unimportant. My meds can’t only be important when I’m on time. And if they aren’t important, why bother? Everything I’ve read points to NOT suddenly stopping lamotrigine.
The official Lamictal site:
| Do not stop LAMICTAL without first talking to a healthcare provider. |
from crazymeds.com:
Quote:
| Like any anticonvulsants, if you’ve been taking Lamictal (lamotrigine) for more than a couple months and you’re up to or above 100mg a day (give or take, depending on other meds you might be taking) you just can’t stop cold turkey if you’re not at the therapeutic dosage for another anticonvulsant that you know works for you, otherwise you risk partial-complex, absence seizures, or even tonic-clonic grand malsdespite your never having had a seizure disorder before! The risk is worse if you’re taking a lithium variant, and/or any antidepressants, especially Wellburtin (bupropion hydrochloride). Even if you are taking something else Lamictal (lamotrigine) has its own set of issues with sudden discontinuation, namely intense headaches and sudden, intense and sometimes suicidal depression. That’s right, Lamictal (lamotrigine) will give you headaches when you take it and it will give you headaches it you suddenly stop taking it. Anyone with a history of a seizure disorder who needs to stop taking an anticonvulsant cold turkey needs to be discussing that with two neurologists and not getting your information from some stupid web site. Get off your computer and start making appointments! |
For an agency established to assist people with mental health problems, & this includes my experiences with other MH agencies too, I feel as though we as consumers are punished for exhibiting the symptoms of our disease. For today specifically, I understand I was late & they needed to reschedule me to avoid backing the entire schedule up. I get that, but what I don’t get is why I so casually forced to go cold-turkey on my meds? I went through this repeatedly with the whole MH system where I was living. Including having to go off meds everything I transitioned from the hospital to MHC to residential treatment back to the MHC. Every time I was turned out with no meds & told to get them from the MHC, who refused to give me anything till I saw their psych who always then started me on something entirely different.
Long story short, I feel like I am being punished in a very cruel & callous fashion, that is completely unethical. I was 10mins late & I’m being treated like a pillbilly who only shows up with I need a fix. I make all my appointments, am honest & active in my therapy, take my pills regularly as prescribed (cash pay btw, they do not provide them for me), & on my own time work towards improving myself & my situation. I am so confused & angry about this. Even if I don’t hear back from the nurse, I have an appointment with my therapist Thursday & I’m going to discuss it with her & see what she can do. I’m ready to report this to NAMI & my state, & anyone else who will listen, but would love some feedback from you guys.
How standard is this practice? Am I overreacting? Did I bring this on myself & therefore deserve to have the meds pulled out from under me?
Thanks to those of you who take the time to read all this & thanks again to those who leave their 2c below.
EDIT: Forgot to mention I have been on 150mg qd.
sure it’s been awhile since i posted two days in a row, but i’m nothing if not inconsistent. plus, there are a couple of things i really needed to write down. so moving on.
something that has occurred to me, probably before now but today it hit me like a ton of profound bricks where before it was just a passing thought or feeling shoved to the back of my mind: i am ashamed of myself. i am ashamed of what i have become. i am ashamed of not working. ashamed of being so damn fat. ashamed of being lazy, of not having the consistent motivation to change, of not staying on track w WW or anything else for that matter. ashamed of not being able to just “get over” my mental problems. ashamed of not having stayed consistently medicated & in treatment over the last 17yrs.
where would my life be if i had? what if i had kept up the walking? stuck with what i was doing before when i lost 30lbs. what if i had been on the ball when i was younger & never let myself get to this point? what if i hadn’t let myself get so depressed before that i quit my job & locked myself in my house so depressed i had a psychotic break & my family had to send the police to my house because they were afraid i was dead? if i wasn’t so fat, would i let someone get close to me? you know, in that let’s get naked at the same time & see what happens kind of way. if i let someone get close to me, would i be able to trust them & share who i really am with them? would having that sort of partner help me get better? instead of keeping to myself & not having that physical shoulder to lean on. sex is a nice antidepressant. but i have nothing to offer anyone else right now & frankly, i don’t even want to see myself naked, much less put it out there for anybody else.
now for my second issue: i think my brain is dying. i’d blame it on the meds, but it has been happening for years only now it seems to be getting worse. i get confused. i’ve always been forgetful & scatterbrained, & given to getting confused, but i mean i really get confused about things. in a very early onset alzheimers kind of way. i’ve even considered lately that at some point it might be a good idea to quit driving. which would really, really suck. i can’t think of what i did when i was thinking that off the top of my head, but i have had instances where i just forget things or don’t notice things. i’ve forgotten where i was & thought i was somewhere else before. somewhere else which didn’t have a hairpin curve followed by a stop sign. i could have killed myself & the other ppl in the car with me. i don’t see cars or i see red lights & in my mind they register as green, eventhough i clearly see red. i get confused taking a shower & forget what i’m doing. i often find myself standing in the shower, with no idea of how long i’ve been standing there, & i don’t know what i’m doing. i see all these bottles & start picking them up looking at them trying to remember what i was doing & get my brain to formulate a plan of what to do next. today i had to run out, & when i got in the car i did all the usual things to get ready to go, but when i went to the release the emergency break – it’s one of those under the dash – my mind could not pull up the file on that process. i turned off the radio & knew that wasn’t it, so i just start hitting buttons & flipping switches till something told me to stop, & then i sat there staring at the brake light trying to register how i turn it off. this is a car i have driven for years. then when i got back i went to check the mail. i drove right passed the mailbox & pulled up the garbage can. it wasn’t until i went to flip up the lid that i realized what i was doing. i was really embarrassed because my aunt & some kids were in their yard across the road. plus, i have a lot of trouble with word recall & my ability to type & spell has gone down hill as well. it’s very frustrating.
i’m way behind on my b12 shots anyway, so i’m going to the dr’s office tomorrow & i’m going to bring it up. i don’t know what’s going on, but i think i have chalked it up to being scatterbrained or having low blood sugar for too long. maybe it is related to the bipolar, but either way i think i need answers. though i am also prepared for the fact that i might need to wait until my medicare kicks in to do anything about it. especially since i’m also prepared for my concerns to be written off by the professionals the same way i have been writing them off for years. it’s going to take insurance to find someone to take it seriously.
so glad i finally got daddy’s laptop fixed! the only source of internet here is a wireless setup daddy has on his laptop, & i have nowhere to setup my pc, so i left it in storage. cable doesn’t come out this far & i’m not sure what’s available from the satellite companies is worth it, at least for what they charge. this setup is well enough for basic net activities.
i got a netflix acct because the last movie rental here closed down at some point. i watched all 5hrs of Torchwood: Children of Earth & Lady Death the Movie yesterday. Don’t worry, all the buffering between epis & connection issues during them gave me plenty of time to move around & work on laundry. though i had not intended to watch the entire torchwood season in one day, but it was just that good! it definitely didn’t feel like 5hrs of watching. the buffering & such really wasn’t that bad, it was all at the beginning, no stops during the showing, but during the day i had several stops where the connection had slowed & they had to adjust the settings for best performance. later in the evening that wasn’t an issue. it’s broadbandaccess through verizon. i have the 2 movie plan for now. the first 2 discs will be District 9 & Firefly: disc 1. daddy has never heard of firefly & i think he’ll really like it. he loves Castle, & chuckles at all castle’s manly quips. he’s a fan of nathan fillion & star wars, & he loves westerns, i don’t see any reason he won’t love Firefly. i haven’t heard too much good about D9, but i want to see it, so i shall!
MH wise i’ve been doing okay. sleeping decent feeling mostly okay. i get down sometimes, antsy at times, but i try to keep busy. my anxiety was getting out of hand, but i’ve gone caffeine free (mostly). i’ve been reading a lot of wonderful books lately too. i applied a few weeks ago to get in at the local MHC & was told someone would call me back about an intake appt, but no one ever did. i finally went back to try again. i had to fill out another application & since i have no insurance i had to show proof of denial for medicaid, in this county. i had my letter showing how i’d been declared ineligible for medicaid when my reg SSD was approved, but that was in another county. same state, just the next county over. so i had to go to the health dept. i filled out the appl, but when i asked the lady about feeling out the last portion for a family type of MCD, the lady was concerned the hear I have no kids; curious concerned, not upset concerned. turns out the appl i had wouldn’t have done me any good anyway. i just need to see a lady, explain what i needed to her, & she gave me a note for the MHC declaring my MCD ineligibility. aparently this is an annoying new policy by the MHC. it does seem silly. MCD is a state program, so it shouldn’t matter what county i was in when i was denied. but anyhoo, i got it, took it back to the MHC, & by some miracle happened to see someone that day. what really sucks now, is that my first appt is a 2hr fete, which will cost me $120 w/ no scale discount avaiable. after that though i qualify for a 75% discount on future appts. i can get either a 30min or 1hr appt, but still will only be seen about once a month. i got back early april.
i spent the first half of this month visit D & i live this wkend to go on vacay w/ M. i’ve been trying to get together w/ K, but you know how flighty he is. while w/ D, we popped into a Ross’s & i bought a beautiful new dress for the warmer days. it’s strappy so i need to make a little jacket for it. i need some sandles for it too. i’ve bought a couple of lovely new girly shoes too & since i got back from NC i’ve been inspired to keep my nails painted. my first was a pretty, pale pink. then i found a shimmery nude colored. i didn’t care for either of them alone, but layered they work great. now i have acquired a purple shade called Mystical. love it! my dad likes them because they remind him of his fave football team. he was not as enthusiastic when i told him i want to get my nose pierced again.
okay, i think it is lunch time. ttyl! hope everyone is doing well. *keeses*
& even if i’m no longer eligible for medicaid i’m glad to have it. i can use it for half-price bus rides. i think it’s a little unfair the special bus rate is only for those on medicare & medicaid, & you have to show your card when you get on the bus, because for the first two years you have SSD (in alabama) you don’t get medicare, & only people who draw under $700/mo can get medicaid. so even if it could be considered cheating a little bit, i still plan on using my medicaid card if i have to ride the bus anymore.
i am also still sad i won’t be getting my SSI check jan 1, but at least it’s because i’ll be getting my SSD check a few weeks later. though i was really looking forward to finally having some money after the first of the year. i could have gotten the new phone & plan to be able to switch to just using my cell & not have to juggle two phones – incoming calls to my cell, but not enough minutes to answer it, so calling them back from the house phone here but i can’t get incoming calls on it because they all go to e’s cell. not that he really makes a big deal about it, but he really doesn’t want me giving his number out & i’d just rather not have to get my phone messages from him.
plus, it would have helped me begin looking for apartments because i might be able to get a deposit together at least if i found something. oh well, i can do that for february & even if i don’t have enough for rent & deposit/s then, i could put down my deposit & be ready to move in for march 1. it’s slowed things down a bit, but just a little.
i got my letters today from SSI & MCD that as of december, when i was qualified for SSD, i know longer qualify for their services. i figured this would happen. it should get me my SSD backpay faster though, since there will be no SSI to deduct, but it probably won’t, lol. this sucks because now i’ll have to wait another 4wks to get any money:~( & i really wanted to get my new phone & plan after the first. oh well, i’ve limped along this long, i bet i can make it a little further.
i know i’m being crazy posty today, but i’m really bored & feeling funky.
reading over the social security info booklet that came with my approval letter i learned a couple of things.
1. this answers a question from my earlier post about receiving the letter – what does it mean for me that i only need a review ever 3yrs. my booklet tells me that there are 3 levels of expected improvement which determine how often you must be evaluated: Expected, Possible, & Not Expected. so i’m in the Improvement Possible category. they think it is possible i’ll improve, but it isn’t expected. thanks for the vote of confidence guys:~p
but really it makes sense. my condition can not be cured, it can just be managed. & even after i’m able to return to work – which i fully intend to do – it’s likely i’ll have relapses which may or may not affect my ability to work. i am pretty crazy & high strung, so i wouldn’t put it past me to have at least a few more major breakdowns in my life. i mean, i’m still young! i’m less than half way through my life, expecting a standard life expectancy, & i’ve already had at least three. though the last two kinda feel like they were just one really loooong bad patch.
2. i can live out of the country & still get my moneys. that i did not know. i could move to canada! or japan. or mexico. or ireland. or england. there is a list of several countries they can not send money to, so you can’t live in those countries, but they aren’t anywhere i’d care to live anyway. i mean cuba? i can’t stand the idea of running out of toilet paper in my house, how could i even consider living somewhere with a country wide TP shortage? no way! makes my ass sad just thinking about it:~(
i spent my friday night sorting through piles & piles of unopened mail, some going back over a year. i set up a database to enter my debts into, just to get a jump start on fixing them all. i tallied them up at the end & i am over $75K in debt. wow, huh? of course the vast, vast majority of that is student loan debt & the next big chunk are medical bills. even seeing that number, i feel okay. there may be a couple of things missing too. i need to check on them.
i have a few little bills i can go ahead & take care of when i get my check, & most of the others i can settle with when i get my back pay. the student loan & the big hospital bills i can make payment arrangements on. i won’t leave me debt free, but it will put me in a much better place than i am now. which is a very, very good thing.
there are a couple of extremely difficult calls i need to make. both are about my things that have been in storage. one is a local place i had written off a couple of years ago. i had gotten everything out of it i wanted, except maybe a couple of boxes & a chair, but the rest was some big/heavy furniture i didn’t want. i left my job & couldn’t make the payments, so in my typical, head-in-the-sand, dysfunctional fashion i just quit making payments on it. well, they have continued to send me bills, which have of course gotten in to the hundreds of dollars, & i don’t know if they still have my stuff or not. they are owned by the same people who own the funeral home that buried my mother, & they are local to home, so i think they have extended me a great deal of grace in the area. their letters state when they sell my things off i will recieve a notice about it & i haven’t, so i feel i should contact them & if they do still have my stuff i should make arrangements to pay what i owe them & get it.
the other is about the rest of my stuff my former landtroll had taken that i couldn’t get the last time i was there. i don’t know if they still have it or have dumped it either. i know by legal standards, & any sane standard really, i have abandoned those things, & i’m okay if they are gone, but i think i should at least find out for sure since i’m trying to get my life straightened out. though the idea of making those calls hurts me. maybe i can convince some kind person to make them for me…
ooh, & something scary that happened! i tried to get one of my free credit reports tonight (which is scary, but the not the scary something i’m talking about). during the identity verification process they asked me some questions regarding information in my credit report. they mentioned i had taken out a home mortgage in april 2009 & asked me a couple of questions about that. WTF? i thought it must be a trick question & answered “none of the above” to both questions, but when it was all said & done they refused to give me my credit report, but weren’t clear about why. so i need to mail my request in. this has me worried that someone has stolen my identity, though i honestly have no freaking idea how anyone using my identity could get any kind of credit, much less get a mortgage. i can’t even write a check at walmart, lol. which is weird, because i don’t have any outstanding bad checks. i’ve never looked into the matter though. i just assume it has something to do with my credit. maybe someday i’ll be brave enough to find out about that too. for now, i don’t even have a checkbook anymore, so it doesn’t matter. but i do need to find out about my credit report.
so now it is official i have been approved:~D schwetty balls. that’s all i’m saying. not that it makes any sense (unless you know what i’m talking about) or has anything to do with this post. just something random that popped into my head.
but back to my point. my first payment will be for dec 2009 & i’ll get it about jan 27, 2010, & my payments will fall on the 4th wed of each month. it’s not the money i was making working full time in my professional capacity, but it’s better than i was making at the part time jobs i couldn’t even keep.
they mentioned they are withholding my backpay, which panicked me, till i read further that it is because they will deduct any SSI i received prior to my approval, & send me another letter about my back pay when that is settled. so not bad, considering i will only get one SSI payment before my reg payment kicks in. so my date of disability is nov 2008, which means i won’t be owed anything before may 2009. so my backpay will be for may-dec 2009. that’s 8mos. not too shabby.
i have to say i’m astounded at the speed of this. i applied in august while i was in residential tx, well that wasn’t august, it was august when i finally completed the appl. i think i started it in july, which is when i was in res tx. so i applied in aug & was approved in dec. i have to believe my professional knowledge helped me with my application. i was very detailed & drove myself crazy(er) digging up details for every job, doctor – reg & psych, counselor, MHC, anything at all for the last 15yrs, that i have mentioned anything about my depression, etc, to. & it was a lot. they even grilled my daddy. his take on my problems if that if you can keep the crazy girl on her meds, but there in lies the rub! keeping me on meds & in treatment. crazy people are classically unreliable at these things.
it helped that 15yrs was the exact time span of my treatment history. my first hospitalization was 1994 & that’s where it all started. i told my doctor i was thinking about killing myself, she – with my permission – contacted my mother & referred me for MH tx, the MHC referred me to a psych hospital since i was suicidal. so my appl spanned my entire MH history of tx. i think it also helped that i had a stable job history & advanced education prior to my last break, & have unsuccessfully attempted to work in the years since, plus having my mother’s death & the first holiday season without her being a precipitating event for my hospitalization.
still, i am as floored as i am elated to have gotten my approval this quick. though it makes me feel guilty because so many people don’t have that luck. & it makes me wonder, since they sent me to a psychologist for testing & such before making a decision, just how fucked up am i??? i need to send off to have my testing results forwarded to the MHC for my psych to peruse. hopefully he can shed some light on what they found. i bet getting my brain stuck on george clinton being the president was what did me in, so to speak. but i’ve worked with a lot of clients applying for SSD & i know what a fickle system it is. there is no way of guessing who will get it when.
plus, since seeing online i had an SSD pymt in the works & believing i was approved, & thinking about getting a car & an apt, i have starting having anxiety attacks thinking about when they would evaluate me & decide i’m ok to go back to work & stop my payment. i need time not just to work on myself, but to get myself back into a position of being less risky for employers. this not only means sticking with my tx & meds, but i plan to do volunteer work & take classes, do a little networking in the area of my interests, & eventually begin working p/t again. so hopefully when i’m ready to go back to work i’ll have lots of stuff to say “see how stable & good i am? please over look all the older stuff” & a network of people who feel comfortable taking the chance on me. well, my letter today says i must be evaluated every 3yrs. wow. this again makes me wonder, just how fucked up do they think i am??? “this bitch is crazy. don’t bring her back here for 3yrs.” i’ve been perfectly nice & polite to everyone i’ve dealt with as a part of this process. why do they push me away?:~( they never invite me to parties…
but all in all, i’m just excited about the prospect of having money again! & having the time to get myself together before i have to go back to work – though i can tell from my experience this year no one is welling to hire me at this point, but can you blame them? – & not having to worry about if & when i do get another job, it will end the same as the last handful. i’ll get so stressed out worrying about things, i’ll freak out, & get down so low i end up not being able to get out of bed or call in to work, therefore forfeiting my job through flakiness. this is especially bad when you are a professional. retail & such expect a certain amount of this, but people with master’s degrees & professional licensure are supposed to be more professional than that. guess i proved them wrong. hah hah!
i got a letter today with a social security benefits temp password on it. i figured it was for my SSI so i logged in (& changed it of course). while i was there i clicked on all the tabs just to see what was there. guess what? it looks like i have been officially approved because it shows i have a payment amount that is not my SSI pymt & that my pymts will be the 3rd of the month. my SSI is less that half the pymt amt listed & it drops on the first. yay! i don’t know when it will start though & it has me down for snail mail pymts. boo! my SSI is on direct deposit.
now i’m wondering about my backpay. from what i’ve read they don’t count the first 5mos of your claim, so that leaves 8mos as of january, & up from there. but since i’m defaulted on my student loan, i wonder if they’ll take it like they do my tax returns? that would suck. it would eat the whole thing up & do nothing to bring me current. i need a car & a place to live very soon, so the money would be very handy. plus i have plenty of other bills in collections i could use the money toward & actually pay them off & be done with them entirely. & i can make pymts on my student loans based on income & have whatever’s left over wiped after 20yrs i think. during that time i could also bring the debt current & rebuild my seriously damaged credit.
i’m excited yet cautious. especially since this means i won’t have medicaid long enough for it to matter. so for the next 2yrs i’ll continue to be sans insurance. boo.
i know i’m being uber posty, but i’m tired & wired. i’ve been having trouble sleeping at night lately, regardless of how tired i am. i just can’t turn my mind off enough to go to sleep. so i’m googling & surfing & posting & thinking ahead to the day my tides have turned back out to the glorious sea sweeping me off this shore of nothing. hurray back to the waves! a mermaid’s home is always in the sea & i’m ready to go home.
for the last few days i’ve also had these crazy drippy eyes. part of me thinks it must be allergies, but i don’t know to what? plus, i feel this solemn inner sadness with them. i don’t have to be thinking anything sad, but i feel this rock in the pit of my gut & tears start sliding out. it’s kinda crazy. i’m so up & down, & even both at the same time, these days i don’t know what to feel from one moment to the next.
