What's your biggest struggle your disabilty (ies) or the meds to treat it/them?

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  1. Blue
    Blue
    For me, a bit of both. In general I don't react well to medications of any kind, including my insulin - it irritates the injection site rapidly, even with a pump, i have to relocate it daily. Also the main reason I don't take antidepressants or other meds at all anymore. The side effects are as bad or worse than anything they are intended to treat.

    I'm a case of "Gee doc, now I'm not depressed because I'm in pain and horrible things were done to me, now I'm depressed because the anti depressant you gave me killed my libido and made me feel like I had been give an lobotomy."

    I stay on my insulin only because there isn't a viable alternative and, I really want to live a few more decades and, without it, is too big a risk for me. Occasionally I need pain meds, but even then only in desperation. So I end up tollerating a lot from arthritis and old injuries that never healed properly (abuse stuff too.)

    I'm fortunate to have a doctor that doesn't push meds and lets me decide what I want - like my Lortab for when the arthritis gets to be too much on a given day, I can take one and get back on my feet in an hour or so and, not have to take anything if I can possible manage without.
  2. LightningStar
    LightningStar
    my biggest struggle is probably is the seizure disorder. altho ihaven't had a seizure in almost 2 years, getting the dx and not being able to drive for over a year (state to state laws vary on this) was really debilitating. i was a college student in the middle of no where at school, small school, no public transport, so i had to bum rides off people which they understood but was really hard for me cuz im really indepenedent despite my walking disability. so to have that independence stripped was really hard. i went into a deep depression for that year. then two years ago i was luckily at a school in the city and was in adifferent state so i was only unable to drive for 6 months. altho i had a roommate who would drive my car to get me places. and when i didn't use the car i took the bus. that was a lot easier. but the main thing with seizure disorders like mine is getting on the right meds, and as of a couple months ago at my check up with nuero i had a perfect EEG. no seizure activity or any thing on it that would suggest i was having them in my sleep (sometimes possible). i will probably be on a small dose of my current medication for the rest of my life but its a small price to pay to have my freedom to get where i need to go.

    ~Kay and co
  3. Siren
    Siren
    Right now I don't have any Lyme meds but for a year I had anti-bitoics first by IV (rocephin) and the orally (Omnicef) and a powder (questran) that I had to take on a very rigid schedule. now I have bipolar med (6 of them) and a restless limb med and a heart med so my heart doesn't beat too fast. so those are a pain.

    Lyme wise it throws off my balance so I have to be careful climbing around to get to places where my patients might be stuck, like off roads and in trees and places like that so I don't become a patient myself. I get stomach problems and headaches and urinary infections easily. I catch colds and the flu and they stay around forever. I got a tattoo in september and it about sent me into a relapse and my Lyme doc (LLMD lyme literate medical doctor) is 12 hours away and although I have found closer LLMDs they want boucoup monies to treat you and don't take insurance. A full blown Lyme relapse will put me in a wheelchair and make it impossible to work, drive barely function at home for weeks maybe months with extreme flu like symptoms and neurological symptoms, I will lose weight till Im beyond skinny and have to drink boost and ensure just to get calories and back to the anti-biotics and whatever else the LLMD prescribes.

    If you have Lyme please get to an LLMD and get proper treatment before you end up past stage one or two and into three where I am and stuck with it for life.
  4. dee76
    dee76
    Well loosing my license because i have seizures and pass out. (for different reasons.) I have had 2 tumors removed from my brain over the years with the most recent one earlier this year. which is why i have seizures now. i no longer have a pituitary gland which made my depression that much worse because all my hormones are messed up. I used to be an avid cyclist and used to race from time to time. now the right side of my body is very weak and i dont feel my right leg very well so i cant ride anymore. my visin is already bad, but comes and goes to extremem measures.i get sick very very easily and a simple cold will stay with me for weeks to months. i dont know why but developed all sorts of auto immune disorders. hashimotos, collagenous colits, ra, and something they just found is causing my perephial neuropothy. (found it last week. i dont know the name if it.) all of which flared up at the same time. i never have an appetite. and the headaches i get are the worst. i often lose time. like i will be in bed then next thing i know im outside or across the street and i dont know how i got there.I usually need help getting back. i take 27 different pills everyday and 2 injections. which seem to counteract each other. the biggest one is it seems to nullify my antidepressants. and im so tired all the time but cant sleep. but after all this i would say living in constant pain is the hardest to deal with. but everyone i truly hop things get easier for you. my heart goes out to everyone.
  5. Marley
    Fully get your question.
    We hate it when one Dr prescribes Z and another prescribes Y and the pharmacist says they won't work together and legally can't fill both. Yet all Drs are continually updated with meds every time we sit in their office.

    We have not been taking X because of the side affects but conviently not mentioned it because every time we did Dr discounted and blamed everything but X. We now have to go back to Dr coz things have got to that point of medically requiring meds. Just hoping Dr will accept X is not an option so we have to find something else and hope $$ won't be the decider. Changing Dr is not an option. $$ is the decider there.

    Your question..... meds or symptoms it is tough
  6. KJConfused
    KJConfused
    I have degenerative joint disease and osteopenia (think basically the same as brittle bones plus all of your soft tissue is failing too). I an new to my dx of DID and have only begun to learn about my past. While I know that my health issues are genetic, I am quickly learning there is a whole other component of abuse that is involved. My T and I are working hard on this right now, but it is so difficult for my mind and body of sort out which pain is from my structure and which is from my mind/spirit.

    As each recovered memory becomes more clear, the pain that never matched up to my spine and joints decrease....but my spinal pain then increases! We are working through it hard and we don't want to regress, but it makes letting the lils out to talk very hard. Even some of the small amounts of discomfort halt our progress with our T.

    On top of that, as im sure you all can relate to...it is just more difficult to deal with depression when your body hurts or is "failing you". I take this on myself very easily and end up feeling guilty, as if I made the pain worse on purpose...sending myself into this spiral of pain and negative thoughts.

    You have no idea how much having this place helps! After years of feeling like I am alone in this, I see that there are others who I can relate to. Thanks for letting me join the group!
  7. familyof23
    familyof23
    I know my disabilities are not as severe as most of urs, (at least the physical disabilities) but I have to say the combination of both hearing and vision loss. I have abnormal formalities in both my optic nerves and it makes a simple eye apt/prescription more complicated. I also have progressive degenerative hearing loss (meaning my hearing will continue to worsen at more rapidly as time goes on) like when I was 13 I had 56% hearing loss in my L ear and 8% loss in my R ear. At age 15 I had 58.59% loss in L ear and 9% loss in R ear. At age 17 I had 63% loss in L ear and still 9% loss in R ear. But then when I was 18 I had total sudden hearing loss in R ear. (Yep, my "good " ear had failed me) I couldn't hear ANYTHING in my Right ear. I couldn't hear well for MONTHS. Dr's tried almost everything. Antibiotics. Orally and puncturing a hole in ear drum to inject anti biotics. Tried setting up a cochlear implant but my hearing was "too good when hearing aids were used" to qualify. My hearing did not return until I was 19. I now have 72% loss In my L ear and 14% in my R. Not being able to hear has made life difficult.
  8. shellbell1
    shellbell1
    my biggest struggle is the medication for my turrets some make me so depressed and others help with depression but not the tics and then my dr is video taping our sessions and my tics go into overdrive. Now i have a new tic and i can not talk when this is happening. I think i was better off with out the meds but i have cronic pain in my upper body due to all the tic's i have had since i was 3. I will not go on the pain meds because to many family members are addicted to pain meds and this scares me so im trying to controll the tics to help with the pain
  9. Ananiujitha
    Ananiujitha
    There probably are meds, but with my health issues, I can't take most meds.
  10. Thesinister
    Thesinister
    I have MS and for me the biggest difficulty is people around me. They are always looking, judging, thinking I'm drunk or high. People very rarely try to help. I never need much help but it would have been nice.
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