Classygirl
Senior Member
Ok. So I saw a board for people to talk about mental issues are dealing with and thought from my experience and with the age group this form seems to attract it may also be good to have a board about Chronic or acute/chronic medical issues that may be impacting your life, school, relationships,ect. As that is an equally difficult issue to deal with and many need an outlet to share thier story in this are so if you have one, feel free it may help others. Forgot how to add spoiler feel free to skip my short version end, lol, long backstory below and just share your own. Note can skip rest below if want. Please use this to talk about how your medical effects your life in any way if need an outlet and know you are not alone. Please no judgement here, and if nothing nice to say respect the ill and just don't comment to them. Anyway don't have to read my partial story or recent bothering situations or can, but feel free either way to use this for your stories and if need to vent or support.
I was always sick, when I was younger 6-16 and beyound but especially then we had no idea or resources in the area to know I had multiple genetic issues causing terrifying attacks of pain...won't describe here as is very graphic..but imagine being stabbed, acute appendicitis but over and over, or severe food poisoning time one million plus headaches and vommitting and chest pain emergency level and may give a mild mild comparison...we had no big genetic centers. Got shuffled around to drs from all specialities over time especially Gi and allergy but wasn't that. I don't process food correctly my body treats it like poison. When young it would spring up when was happy and had plans with friends or during..ugh..and kept me out of school 2/3 of every year until grade 10 at 15-16 when one teacher in Eng AP decided that while I could pass end of year test it would look bad on her so wouldn't let me try wanted me to repeat so my mother got a lot of crap from others when she pulled me out and I got my GED.. I went on later to get 2 BAs History and Eng and an MA in Eng Lit completed online and almost my MA in Film and Media but couldn't keep up by then.
I had trouble trying to work full time from 16 thru college years and always lost jobs due to needing to call out, wish I knew then what do now..but it was rough and some drs who didn't know me loved the it's all in your head line. But it wasn't, am now on total disability, not going away or going to get better or be able to work. Still young and this is tough esp in relationships where partner must be breadwinner which a few decades ago would be the norm but now a female young who can't do it all on her own, it is rough. So after a nephew passed genetics got more involved have 3 genetic diseases and 16 related but seperate physical disabilities or complications thereof disabling in themselves and things are getting worse...Female issues, severe headaches, needing surgeries and tests, too sick to get to dr,some days and them not understanding severity of acute issues emergency can't be moved. Had many bad med side effects. Metabolic disorder tiny but go through high meds fast at dosages people by weight 4x my size would need and pain management quality of life is hard as need these things to live and always gotta have that metabolic gene report and other things that disability should and does have but regular system doesn't...now need an advocate and lawyer to fix wrong records navigate those systems of gov, deal with my health never know what day to day will be so some a oximetry there but no major depression or mental issues which seems to astound drs how can you be sick and not depressed..I just am not, I don't know, lol. Those meds don't need and have bad effects. My fianc? in nursing school younger than me doesn't get my situation totally or how to handle it..well my answer be there don't play dr I have those just care and when need help ask what I need. Just found new genetic where folic acid doesn't produce and is toxic got thrown on high dose supplement to help that but set off mitochondrial issue and had worst reaction ever...so tired of drs not thinking I was on 1,000 mcg supplement he didn't want to change to two just yet then my mom gave me prescription level 15 ml huge jump and I reacted..mad because am over 18 not a dependent he should have told me if changed his mind about a dangerous prescription high dose version from vitamin supplement but I think due to price my mom got samples and didn't think as has low folic but not my diseases what that dose would do and so didn't want me to call drs office about reaction..
Sorry last part just happened so am angry she doesn't get all of it either, I am capable and smart but can't lift and tire easily, porphyria have heat issues and some people when take a witness or driver talk to them not me, though mentally fine. Trying to get home help and advocates and need help with that but find with chronic illness people want to avoid you as yes always an issue to talk about at times. And apparently I don't produce the hormones to calm down others do when someone gets me stressed, which is hormone and neuro not psych but my family likes to push those buttons. Sick all the time and when severe can't do much but hope my pain meds make it less often or less pain have people around not just for apts or take to tests but when here sick, or especially my boyfriend to not try to fix the u fixable but be empathetic and just be, not go I to nursing school mode and be patronizing about tests can be done why...already know the issue. Anyway can get awful, can't sleep even though exhausted the last med did help but I will rather not sleep than have nightmares and hallucination dreams esp as goes straight to my head and out of system within hrs as most meds do, leaving me feeling awful when have to stop it due to reaction. Look normal, actually look much younger than I am, but that's an issue too went to movies to see Jaws re release was packed not in a wheelchair yet thank goodness day hasn't come just yet but couldn't hold neck up or see in non stadium front row seats..moved back one step up to handicap chair, a little better empty spot for a wheelchair between seats so my fianc? instead of looking for higher up seats, gets embarrassed of issues in public..asked a young guy in handicap seat to left if would move he said wasn't handicapped just sitting back from family...I didn't know there was a five plus foot gap between seats for a chair so I had to sit on his lap and he had to hold my neck up and back whole movie...Thyroid and hormones ect I can talk fast, need help and my family and him are weird about it. Ex motion sickness and headaches during attacks, was on a bus in Disney on vacation knew I was going to start a throw up jag soon every bump and deep breathe made it worse..I saw many people with shopping plastic bags that only had t shirts I asked person with me if I tell you ask one of the, if they would be kind enough to take out the t shirt and hold it as were going to hotel so I could have the bag if couldn't make it..was told no won't ask that get sick in my expensive coach purse the one nice thing I have...luckily I made it there but other times haven't.
It's hard to explain multi systemic, won't get better but does get worse, cysts, tumors, ect ect family wishes was well just because am older too sick to live alone and don't get much on disability to live on and no one expects these situations. Getting sick when no one can help, telling people need help and them just leaving me alone, my family went on a family vacation I wasn't invited I would like to get away for a bit too it's been years, also don't want to feel they want me to marry someone who can't care for me and is t going to be set up a few yrs I might not have and we have non illness relationship issues just to see me out of here when we have general relationship problems.apparently he has ADHD which I know nothing about but blames this for snapping at me in inappropriate ways...
My diagnosis eps and issues are way complicated to explain, but I know what it's been like at all ages to deal with chronic and increasing bad health from young age where get misdiagnosed or tossed around, to finding rare things are root, to school, family, and social issues that come with. Am sure others have stories and need to talk, so am opening the gate for you. Forgive typos, my hands get arthritic badly.
I was always sick, when I was younger 6-16 and beyound but especially then we had no idea or resources in the area to know I had multiple genetic issues causing terrifying attacks of pain...won't describe here as is very graphic..but imagine being stabbed, acute appendicitis but over and over, or severe food poisoning time one million plus headaches and vommitting and chest pain emergency level and may give a mild mild comparison...we had no big genetic centers. Got shuffled around to drs from all specialities over time especially Gi and allergy but wasn't that. I don't process food correctly my body treats it like poison. When young it would spring up when was happy and had plans with friends or during..ugh..and kept me out of school 2/3 of every year until grade 10 at 15-16 when one teacher in Eng AP decided that while I could pass end of year test it would look bad on her so wouldn't let me try wanted me to repeat so my mother got a lot of crap from others when she pulled me out and I got my GED.. I went on later to get 2 BAs History and Eng and an MA in Eng Lit completed online and almost my MA in Film and Media but couldn't keep up by then.
I had trouble trying to work full time from 16 thru college years and always lost jobs due to needing to call out, wish I knew then what do now..but it was rough and some drs who didn't know me loved the it's all in your head line. But it wasn't, am now on total disability, not going away or going to get better or be able to work. Still young and this is tough esp in relationships where partner must be breadwinner which a few decades ago would be the norm but now a female young who can't do it all on her own, it is rough. So after a nephew passed genetics got more involved have 3 genetic diseases and 16 related but seperate physical disabilities or complications thereof disabling in themselves and things are getting worse...Female issues, severe headaches, needing surgeries and tests, too sick to get to dr,some days and them not understanding severity of acute issues emergency can't be moved. Had many bad med side effects. Metabolic disorder tiny but go through high meds fast at dosages people by weight 4x my size would need and pain management quality of life is hard as need these things to live and always gotta have that metabolic gene report and other things that disability should and does have but regular system doesn't...now need an advocate and lawyer to fix wrong records navigate those systems of gov, deal with my health never know what day to day will be so some a oximetry there but no major depression or mental issues which seems to astound drs how can you be sick and not depressed..I just am not, I don't know, lol. Those meds don't need and have bad effects. My fianc? in nursing school younger than me doesn't get my situation totally or how to handle it..well my answer be there don't play dr I have those just care and when need help ask what I need. Just found new genetic where folic acid doesn't produce and is toxic got thrown on high dose supplement to help that but set off mitochondrial issue and had worst reaction ever...so tired of drs not thinking I was on 1,000 mcg supplement he didn't want to change to two just yet then my mom gave me prescription level 15 ml huge jump and I reacted..mad because am over 18 not a dependent he should have told me if changed his mind about a dangerous prescription high dose version from vitamin supplement but I think due to price my mom got samples and didn't think as has low folic but not my diseases what that dose would do and so didn't want me to call drs office about reaction..
Sorry last part just happened so am angry she doesn't get all of it either, I am capable and smart but can't lift and tire easily, porphyria have heat issues and some people when take a witness or driver talk to them not me, though mentally fine. Trying to get home help and advocates and need help with that but find with chronic illness people want to avoid you as yes always an issue to talk about at times. And apparently I don't produce the hormones to calm down others do when someone gets me stressed, which is hormone and neuro not psych but my family likes to push those buttons. Sick all the time and when severe can't do much but hope my pain meds make it less often or less pain have people around not just for apts or take to tests but when here sick, or especially my boyfriend to not try to fix the u fixable but be empathetic and just be, not go I to nursing school mode and be patronizing about tests can be done why...already know the issue. Anyway can get awful, can't sleep even though exhausted the last med did help but I will rather not sleep than have nightmares and hallucination dreams esp as goes straight to my head and out of system within hrs as most meds do, leaving me feeling awful when have to stop it due to reaction. Look normal, actually look much younger than I am, but that's an issue too went to movies to see Jaws re release was packed not in a wheelchair yet thank goodness day hasn't come just yet but couldn't hold neck up or see in non stadium front row seats..moved back one step up to handicap chair, a little better empty spot for a wheelchair between seats so my fianc? instead of looking for higher up seats, gets embarrassed of issues in public..asked a young guy in handicap seat to left if would move he said wasn't handicapped just sitting back from family...I didn't know there was a five plus foot gap between seats for a chair so I had to sit on his lap and he had to hold my neck up and back whole movie...Thyroid and hormones ect I can talk fast, need help and my family and him are weird about it. Ex motion sickness and headaches during attacks, was on a bus in Disney on vacation knew I was going to start a throw up jag soon every bump and deep breathe made it worse..I saw many people with shopping plastic bags that only had t shirts I asked person with me if I tell you ask one of the, if they would be kind enough to take out the t shirt and hold it as were going to hotel so I could have the bag if couldn't make it..was told no won't ask that get sick in my expensive coach purse the one nice thing I have...luckily I made it there but other times haven't.
It's hard to explain multi systemic, won't get better but does get worse, cysts, tumors, ect ect family wishes was well just because am older too sick to live alone and don't get much on disability to live on and no one expects these situations. Getting sick when no one can help, telling people need help and them just leaving me alone, my family went on a family vacation I wasn't invited I would like to get away for a bit too it's been years, also don't want to feel they want me to marry someone who can't care for me and is t going to be set up a few yrs I might not have and we have non illness relationship issues just to see me out of here when we have general relationship problems.apparently he has ADHD which I know nothing about but blames this for snapping at me in inappropriate ways...
My diagnosis eps and issues are way complicated to explain, but I know what it's been like at all ages to deal with chronic and increasing bad health from young age where get misdiagnosed or tossed around, to finding rare things are root, to school, family, and social issues that come with. Am sure others have stories and need to talk, so am opening the gate for you. Forgive typos, my hands get arthritic badly.
