Going down

General
1

Everything was going good, then I was at my sister's when she was sick (I didn't know it until after I was there). This started a round of pleurisy and now i'm heading into a full out flair.

Sleeping for hours on end.

Walking becoming more and more painful.

and to the point where I kinda want to give up.

It's so hard staying strong but it's getting so hard to deal with the pain some days I want to end it all.

I won't, but I'll admit the want has crossed my mind.

I got a tattoo about 3 months back. It reads never give up across my wrist. It's these words that keep me from giving in.

I'm just not sure how to deal with the stress and the pain anymore.

Running out of meds, no insurance means no doctors and no doctors means no help and more suffering.

Years ago I used to get 2 needles in the soft spot in the back of my head. worst thing imaginable because if i moved it could seriously hurt me. Having this done would block most pain signals and numb most of the pain. For me to even want to go through that again should be enough to explain how much pain i'm in now.

I don't know what to do, how do i keep going on, what did i do to deserve this?

I'm 19! I can't play sports, I can barely go for a walk, I can't run, It's hard to play with my nieces, People think I'm anorexic because I never have an appetite. I'm 19 but i feel as old as my grandmother.

I have an oppurtunity to follow my dream and move back to indy to become an interperter for the deaf, and I'm to scared to go because I'll be all alone again and have no support. I'm home right now with my family and I still feel weak. I don't want to let life pass me by, but what do I do when I have nothing?

No job, no money, no insurance. It all means no way to get better.

I'm 19, and all I want to do is give up.

I know I'm not the only one who's been at this point in life.

please help me gain a better outlook.

Mary

2

Mary, I'm much older than you, but have had family members with serious health issues young. It is hard, no doubt. The fact that you are not giving up on yourself is huge, I feel maybe you need help more with resources than outlook. You are a smart young lady, and it's circumstances that are the challenge.

A couple of possibilities come to mind for basic care - the free clinic, going to the county Health Department, or even contacting the Lupus Foundation (at lupus.org) or any other places others may know of for leads on finding medical help. By no means give up on your dream, but with going through a full blown flare, you may want to postpone any major life changes until feeling better. Right now, being at home, you have that support network around you.

As far as meds go, every major pharmaceutical company I know of has a program in place for people unable to afford theirs, for many illnesses. You would have to do some paperwork with each one, but it's well worth it if it will help you through this rough time.

Wish I could be of more help, and will do some digging to see what I can come up with. Keep posting, and know you are not alone.

healing hugs,

Louise

3

it's not getting the meds that are the problem it's getting the doctors to sign off on the right ones i need.....

I'm currently on 100 mg of tramadol (2x my normal dose) and i'm still in a lot of pain..... I've been told it's ok to double the dose if i take the 2 tablets 2 hours apart minimum.

4

"NEVER GIVE UP".......you hang in there.........

It is so easy to feel defeated especially when we are in a bad flare or are feeling really bad...........but just remember that "this too shall pass"

sending you HUGS and BLESSINGS and I will be praying for you :)

5

I found traumadol only made me depressed it might not be the pain killer for you I am on patches as I found it very hard to get the pain under control and keep it there.i have felt like giving up often.but I have I sister with lupus too and we have a laugh over not being able to walk some days.we need to laugh more often at our selves .i hope you feel better i send you hugs to

6

No I can't. I live in Northwest Indiana. There are only 4 schools in state that offer ITP and Illinois college costs are outrageous. The closest school that offered it wants 20 grand in loans for me to go, so not happening.

I already drink ensure and I've started drinking smoothies (i hate the texture of fruit but i'll drink it). I've been drinking it for a while and sadly it's become a good part of my diet.

My mom knows the difference but living with my gma now, she doesn't understand me not eating.

I'm hoping it'll see remission soon even though my remission often only lasts a few weeks at most.

I'm trying to see if B12 will help with the fatigue.

It doesn't help that the pleurisy bit has gotten worse. It started as a case of pleurisy which is nbd to me, give me some predinsone and it'll be dealt with usually. No this dr decided to give me an antibiotic and it's made things a gajillion times worse. Nose draining, sore throat, headache, earache, chest pressure, stabbing pains. I've been rolling into a ball and just laying watching tv until it passes. They tried to tell me my xray was clean but I know it couldn't have been cuz I know my body. Yes I realize the chest pains and stuff should be a concern and I should have it get investigated better but I KNOW its an upperrespitory problem with my immune system got pissed ignored a virus and made things worse. Antibiotics don't help viruses nor do they tell the immune system to shut up and cease fire.

I'm doing better today than when I posted this. Shoot I'm doing better than 5 hours ago when I asked to go sit in the middle of the road and be hit by a truck because it would probably hurt less than the amount of pain I was in at that time.

I built up a tolerance to tramadol and now being outta insurance I'm SOL on getting it switched to a new pain med or being put on steroids or immunosuppressives. I know it's bad to say but I know you all understand, I want my necessary drugs, shoot I need them to function otherwise I end up being a exhausted lump on the couch and I can barely get up to get my meds let alone get dressed, go to school or anything.

I've always known my hair came out, I always thought it was normal. I'm finally coming to the realization that I am losing my hair. I can clog a shower drain, fill my brush and still have it all over my hands from styling my hair and stuck on my clothes. They fall out by the roots, they don't often break. How embarrasing is it to go to a guys or even friends house and you end up "shedding" all over their couch or car or something. I guess I should be thankful that noone can notice aside from the hair everywhere, like you can't see patches on my head or nothing, it's realtively even.

I know it's not my fault but it's just a crappy hand to have been dealt in genetics. I would give anything to remember what it was like to have that freedom and unlimited energy, to have a day lupus free, not lupus in remission but lupus free no concequences. I've been having problems since 2007 (7th grade) i'm now essentially a Sophmore in college, and i feel like I've missed my "teenage prime" not really being able to go out and do things.

I'm trying to stay strong and pushing forward but somedays its hard. I've been having days that start off great full of energy and I'm like today should be a good day. I don't over exert myself or anything I do my normal stuff and not even half way through the day I'm out of spoons and "dead". Has this ever happened to anyone?

Thank you for the encouraging words.

7

After a few years I've learned how to keep going even at my worst. I've learned to go to school when dizzy, drive when tired, and find alternate ways to help when doctors wont. People who don't know my past wonder why I'm so mature for my age, but when you see what I've had to deal with You'd be surprised I haven't given up completely.

You know I have to say to someone who understands what stress does to my health what's going on and kinda vent.

Mom quit her job last week and at over 50 and no college degree, it's hard for her to find another making enough to make ends meet. She's going to loose her vehicle within a few days because she can't pay on it. She's one of 11 and she's getting a lot of crap from her brothers and sisters to the point that even my grandma is getting pissed at them. stress doesn't help that we live with my gma and I sleep in the living room. Mom's pressing me about saving money because of all this and now I feel that if I get the job at a daycare or pull the loan so I have money to keep gas in the car and my phone on that I need to support mom with those features as well. It doesn't help my mom has some thing where she has to have a guy in her life so her complaining about that adds stress because I feel I have to be the parent.

I just don't know what to do.

No I can't take any of my classes online, the ones that are offered online are ones that I need in class because the information is difficult to understand.

8

Shortie, I’m so sorry you are feeling so bad. Can you apply for Medicaid since you are only 19 and your mom has limited income?

9

she's working on that now, if she gets denied then I'll reapply on my own again,

they denied me because of reasons I had no idea of saying I didn't turn in paperwork of termination of work in michigan or a bond that I don't even have. like the termination of work i had requested to be sent in and was told all my paperwork was in and that was my workplaces job to submit it. indiana is so retarded sometimes.

10

Ann,

I went to school in michigan for a year, it was difficult being so far away from home and on my own trying to deal with lupus and all the complications with it.

11

how are you suppose to do that