Complaining.

Sometimes I feel as if I can't complain around my family.. and although they're amazing, especially my mother dealing with me being so sick I still feel horrible for complaining, sometimes she feels like she can't complain about anything.. and I know that complaining to her makes her feel helpless because she can't do anything about it.
So I must say, I'm very thankful for this place, because as many people know that are in the same shoes.. doctors and people make you feel as if you're insane a lot, because you have so many things wrong with you. So the venting begins...
I'm 25 years old, and although I HAVE been sick since I was 13.. it's gotten worse lately, as I've stated before. All the doctors appointments.. never being able to work, and having no insurance but just now being diagnosed with something bad enough to get on disability for. Despite the fact that before I got dxed with lupus, I had A-fib, tachy cardia (which has now changed to SVT.. my heart rate gets over 200 at times), high blood pressure, Renal stenosis, Biliary C, horrid migraines (which I was told are lupus headaches, or headaches from FM) FM, (Which I was told that most people can't get on disability for because the symptoms vary so much, and it's really hard to have a definate testing for) Seizures (that they couldn't figure out, because my EEG and MRI's didn't show anything) an ovarian tumor, nueropathy..arthritis.. anyway you get the picture. I'm not on insurance, and I have to go to a free clinic for general practice and I have to pay out of pocket for all the specialists. It urks me when people say things like.. "You know, it could always be worse, and you should be thankful for what you have." I AM thankful for what I have.. I thank God everyday for my amazing mother who has always taken care of me.. but aren't we entitled to our bad days too? I know that nobody else understands unless they've been there.. which is why I'm very thankful for this place. The winter time is horrible. I'm having to use a cane.. and I feel ridiculous needing to use a cane at my age. Sometimes I can't get out of bed.. other days I don't feel like getting out of bed, but I do anyway. I feel as if I've never fully been able to experience life like most people. I've never been able to work.. dance.. do things that most people my age have been able to do. I get frustrated when people ask me what's wrong, I say lupus.. and they haven't a clue what it is.
Alright, I had to get that off my chest.. thank you for reading my venting.

Rebecca, my heart goes out to you and melissa and the others who are so sick and don't have insurance. It has to make getting treatment so much harder. You are right about what a great place this is - it has been like a lifeline for me and it can be such a blessing to come here and be among people who truly understand the ups and downs of living with this disease. First of all, I don't think that you are complaining. You have been through a lot and you need to be able to talk about it. I think those of you who get this disease at a young age have even more to deal with emotionally because you probably missed out on things healthy people your age did. I think that most of us here try to stay upbeat and positive, but there are times when everything just gets to be too much and you need a compassionate ear and a shoulder to cry on and we are all here for you. So many things about this disease are unfair and there is a lot of greif that goes along with this disease. I'm finding it hard to talk to family about my illness lately too and want to figure out a way to do it withought seeming like I'm asking for pity because I'm not - I just want people to try to understand. It's hard because most people just don't know much about lupus or understand it very well at all. Hang in there. I'm glad you were able to talk about your feelings here and I hope it helped. You can vent anytime. Take care

((((((((((Rebecca)))))))))))

Thank you very much, it's been really hard lately. Actually I just got of the hospital, fun fun. This time of the year is never fun for the joints.

Update:
I was in the hospital for only 2 days.. thank goodness. I was hoping it wasn't going to be worse than that. It was one of my worse flares to date. I was having to use a cane because of my hip.. that has just had a lot of worn down cartiladge.. and now, I'm having to use a wheelchair for when I seriously need it. I also had to shave my head, between most of my hair being gone and the sores on my head... it seemed easier that way, the pain is horrid... so they put me on 1 to 2 7.5 oxycodone when needed. They also upped my Plaquenil, and predisone.. and gave me some phenagran. Oh and they did have to up my depakote.. I had quite a few seizures. Most of my family has been great.. but one of my best firends, just seemed to have tinkered off... He's the one that took me to the ER, and he's the one that came got me.. but past that he hasn't seem in the past few days..he says it's just work, but anyone knows no matter WHAT situation you're in something can happen tomorrow.It's just sad to deal with.. and I hope it won't last much longer, I'll give him his space in the mean time, I'll spend time with my family who loves me very very much.
I hope everyone TRIES and stays well!!!
Xoxoxox

Thank you, it's been hard trying to stay upbeat, when I was in the hospital they gave me large doses of auto-immune suppressant drugs that caused the rest of my hair to fall out.. so I had to shave what little bit I had off, between that and the horrid storm we're having that's causing havoc on my arthritis and everything it's been pretty bad. My friend said that being in any sort of relationship with me was too much respondsibility, this was the first time he's seen me this sick.. he pulled back as soon as I was put into the hospital.. it's disinheartening but I have a family that's very loving and supportive, and I'm thankful to God for that. I'm trying to not let depression rear it's ugly head, but it's coming.. I'm just thankful for this place and everyone being so uplifting.
I hope everyone is staying well.

Thank you, very much. I appreciate the thoughts and prayers.