So in the little while i haven't been on a lot has changed....
I've Moved back home to Indiana from Michigan. I start a new college at the beg of September about half the distance from home that i was. I quit my job at the amusement park that made me so sick being in the sun and standing most of the time.
Now the hard parts
Starting over at a new college. I'm not sure how many credits transfer. Trying to get back on medicaid. Finding GOOD doctors that understand what Lupus is and that I know i have it and won't play the lets change the dx game. :P
Man i hate that game.....i think that's the worst part of relocating.... finding good doctors who listen and don't think your crazy....The even worse part? A few doctors have told me i have Lupus but evidently it didn't make it into their notes :/.
I hate that they say something verbally and then don't record it so it completely screws me... I'm going to try to get as many records as i can dating all the way back to 08.
Oh and i'm trying to get disability because i have discovered i cannot work a full time job without getting really sick and fatigued and that my Lupus has decided it doesn't care what season it is this year, it wants to be in a mood and make me hurt and feel like junk.
Wish me luck on fighting with Medicaid and Disability.
For disability the qualifying criteria is the amount of money you earn per month- not whether it is full time. And the $ amount is VERY low- $900?? It might be better if you would search for a part time job that is easier for you to manage. Part of this illness is how to remain active with this disease and you are so young with a long life to live yet
I'm 19 and my body is almost as bad as my 90 year old grandmothers. I know my Lupus is not under the control it should be and it's not going to be until I find a decent rhemy whos head is not up his rear and knows what their talking about and knows about lupus. And until that happens I can't work and even working part time it's not even 800 after taxes (min wage here is 7.25) and housing here is over 600 for rent at the cheapest in most places not including food, electric and gas for a car to get to work. I'm trying very hard to be active and use a stationary bike each night as it's the easiest for me. I'm trying to go to school and get degrees I can do and work around my lupus and doctor appts.
poobie said:
For disability the qualifying criteria is the amount of money you earn per month- not whether it is full time. And the $ amount is VERY low- $900?? It might be better if you would search for a part time job that is easier for you to manage. Part of this illness is how to remain active with this disease and you are so young with a long life to live yet
I’m going to second what poobie said. It’s insanely difficult to get disability- and who winds up succeeding always seems very arbitrary to me (I’m in the medical field so I’ve seen lots of patients try. The ones I think are actually disabled don’t always get it, and ones I think are not as needy sometimes do). It also takes a LONG time and a doctor willing to go to bat for you. Sounds like finding a good rheum will be the key- hopefully to getting better so that you don’t have to go the disability route, but even if you do.
Also, think about jobs that maybe are easy on your joints and energy level. Call center work? Transcription? Those may even be work from home opportunities.
Changing jobs allowed me a lot more rest and to work in a lower stress less physically demanding area- and it’s made a world of difference in how I feel. I’m praying you find a doctor that can help you through this challenging time.
Oh I'll find a way to get what i need if i have to drive people nuts. Right now the fight is getting back on this states medicaid. I see a dr on the 25th and I guess that's suppose to help me with qualifying for disability....I'm not sure but I'm doing what I have to so I can get my insurance. Medical bills tend to stack up. And finding a good dr who understands and all that is like 5 times harder for me vs adults because I'm just a silly teenager who doesn't know what shes talking about and is just searching for drugs. Ughhhh I hate when I hear this junk from doctors.
And it's hard for me to really get in anywhere because I am 19 with very little work experience and it's hard to get my foot in the door. At least getting dx as an adult you guys had work experience and ssi behind you. which is actually the only reason i got denied for ssdi was because i haven't worked enough to put into the SS funds.
