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Miss Sunshine
10-24-2006, 08:08 AM
Hi guys:)

I'm gong through a dilema about coping skills with Lupus.
After having a core decompression on my right hip and a total hip replacement at 21, I quit smoking for a while. I had two blood cloats the following year in my lungs and while on Coumadin was not smoking.

I have severe kidney involvement and have been taking CellCept, this summer I went out everynight with my co-workers for drinks and I feel guilty when I see my doctors and my tests results are always just as bad.
I suffer the consequences in silence, I can't blame anyone for my destructive behaviour. I expect to wake up puffy, swollen and in so much pain.
Can someone tell me if I am going through a phase, or am I slowly killing myself?

MARYCAIN
10-24-2006, 10:16 AM
I really don't think it's either one - I think you're just a normal young woman who wants to enjoy the life you would have had if you didn't have lupus - it's perfectly understandable and doesn't mean you have some hidden death wish.

Acceptance of this disease comes hard for some people - it's hard to accept that your life has changed in dramatic ways, and to some degree you don't have control of what happens any more. So defying the disease and doing what you want, even if it isn't what's best for you, is a way of taking control of your life. In a way, it's good - it means you are a strong person with a strong will. The trick is focusing that strength of will on positive things that help you.

If you are drinking every evening because you need to drink, then you might have an issue with addiction that you need to deal with. If you are doing it just to be with your friends, skip the alcohol and have ginger ale or something non-alcoholic instead. Maybe you can go out once or twice a week instead of every night, so you can get more rest. Or think about some things you can do that don't avoid alcohol, so you won't be tempted constantly to drink.

It's hard when you have a chronic disease and all your friends are healthy, so maybe it's time to educate them a little about lupus, so they understand that you don't always feel like going out and you don't need to drink. Your friends can be your best support group if you let them. It may be hard to talk about at first, but it pays off in the long run.

lupusgirlstefanie
10-29-2006, 02:54 PM
I can relate I was diagnosed with lupus at age 20 and now serveral other stuff and I'm only 22 so I know how it feels to wnat ot go out and have some drinks and party.

I feel that at times my youth was striped from me at a young age because of this illness not being able to do things the way I want and such and not being able to drink cause of the effects nad the medications.

But seriously you do have to be careful, alcohol can interact with meds and stop them from doing what they are supposed to do, and smoking also can interfere.

I would say try to stay away from them both and the odd time you feel the need ot be with friends just try ot have only one drink.

I don't think you're killing yourself but I do think you need to be careful and besides for me I don't drink anymore at all (that's just my choice)
I foud that the pain teh next day just wasn't worth it.

take care

stjames13
10-30-2006, 08:34 AM
8)
I would say it is NEITHER what you are going through is DENIAL !!!

You have to admit toyourself that you do infact have these illness's and HELP the DOCTORS help you feel better.

Why do something you know is gonna cause you discomfort????

You MUST start tobe YOUR OWN BEST FRIEND.....find other way to fit in.

You can NOT do what other who do not have this disease and expect to not feel and adverse re-actions....but you can still goout with your friends just dont DRINK or do anything that is gonna casue you discomfort.

HOPE that help....sorry I know it is not what you wanted to hear....but it is the truth.

I am not saying to do this but a friend of mine with Lupus smokes marijuana and CLAIMS it helps him feel better and relax and takes away some of his pain....but I can "NOT" advocate that....that choice is yours.

Some states have different laws as to the use of marijuana.....
Personally I think Congress ought to pass the use of it for MEDICAL REASONS...but right now they are more intrested in keping there jobs than helping us !!!!!

STJAMES 8)

littlered
10-30-2006, 03:35 PM
I have had to give up alcohol entirely. Yes, I miss it. I used to love the taste of a good mellow sweetly smoky Scotch rocks on the patio with my husband, but it's just too bad for my liver. Doesn't mean I don't shed the occasional Irish tear or two for my Jameson's tho.

kbergin16
11-05-2006, 12:30 PM
I know what you mean. I'm only 20 and I've had lupus since I was 16; I've always drank occasionally. I find it's so hard not to drink at college. I'm at a competitve school and everyone here unwinds on the weekends at the bar; sometimes I don't drink at all, but I hate being the only sober one when everyone is getting trashed! It's really hard for me. I don't really smoke pot either but it does relax you, and my mom (she's a nurse practitioner) said it was better than drinking when it comes to interacting with the meds. I'm really trying not to drink, I say it every weekend and it never works. But i have limited to only once a week, and I try not to have more than 3 drinks. I'm a lightweight anyway, I only weigh 115 lbs so I'm always feeling it after 2, haha. But just try and limit it to once a week if you can't do it at all, it's hard but I really don't think I could NEVER drink, especially at college!

chal23
11-06-2006, 12:43 AM
Miss Sunshine -

Nothing is good in excess, but the occasional cocktail should not hurt as long as your docs say its OK! I know that having a couple drinks puts a much cheerier perspective on things and always makes me forget about the pain/bad health news, etc.

Like you - Im n my 20s and going out and having a couple makes me feel 'normal'; from the atmosphere, the friends and easing the pain in a cocktail.

Take it all in moderation - and dont drink to cure anything - depression/blues included.

Chal

ganesha
11-13-2006, 01:08 AM
I have found that alcohol really adversely affects me, and I feel crappy right awaydue to my lupus. But I remember when I was first paralyzed from a car accident (no Lupus at this time), and when I got out of the hospital I went out drinking quite a bit. Honestly, I feel it was because I had no idea what else to do with my friends. Being in a wheelchair in super active Colorado can be intimidating, and I resorted to the one thing that was easy to do.
But, I realized after a couple months how negative that situation was for me. I was not moving forward and finding my place in this new world. I have felt that same feeling through Lupus. After my bar hound days, I got active and raced handcycles, rode 500 miles in 7 days through the rocky mountains, rock climbed, and many other things. But it took a little time on my own gaining strength and really focusing on myself. Now with a Lupus diagnosis my lifestyle has again been taken away from me, and that sucks really bad, but again I have to find my way to live with this situation. Honestly accepting paralysis was much easier than accepting the Lupus on top, and I have still not fully found my path, but I am trying everyday, and you must do the same. I think you definately realize your behavior is dangerous and unhealthy. We need little indulgences, but if it sends us into flares or threatens our health, we must be strong enough to minimize its presence in our lives. But battling a bit of a sugar addiction, I realize it is easier said than done to change our lifestyles.
One last note, I use medical marijuana for my pain and my indulgence, and I try to use it with respect and moderation. It helps me greatly, but with my being in a wheelchair, my situation is somewhat unique. I am fortunate to live in a state that has legalized medical marijuana and I proceed without worry of prosecution.
I hope you find your way, and always get plenty of rest and sleep. I find that to be most vital for me.
Peace
Brent

lizzybee
11-16-2006, 02:30 PM
HI miss sunshine,

I too was diagnosed at a young age, 21 in fact I had just graduated from university and I couldn't accept the fact that my friends and class mates were out living their lives to the full and i was getting blood tests and could barely walk from the lupus. i didn't want it and i tried for the longest time to pretend i was ok and i could live just like all my friends. after a recent flare up i am on cellcept too and i think after 2 years i might finally be ready to admitt i have lupus and have to live my life accordingly. but you are right to react to this in your own way, it is as much an emotional disease as it is a physical one. don't put your health at risk tho, go easy on the alcohol, but its ok to not know how to react, i don't think there is one right way, but I hear you sister!

littlered
12-07-2006, 05:57 PM
I did something really REALLY stupid two weeks ago.... (Is this the confessional booth?)
Our first cold front moved in, and of COURSE I was still in flare, so the massive dose of prednisone didn't help much...and I was in complete and utter agony with my leg...I called my doctor and left a detailed message telling him I needed some strong pain meds to get me over the next few very cold days. No call back. I called back about 2:15, only to be told they had "gone for the day at 2:00!!"
Well, I was angry and desperate. I mean, I was willing to do ANYthing to kill the pain. I had one Tylenol 3 left (they don't help that much with that kind of pain) and (I am so ashamed) I took a few shots of liquor with it to numb the pain. :oops: YES I KNOW BETTER!!!
My dear friend Erica was watching TV with me (she had no idea that I was slipping into the kitchen and taking shots!) and at some point in time, it's all a blackout to me. She said I began to pound the walls and cry and scream, "I am so sick of being SICK and so tired of HURTING!" My husband was shopping at the time, and she became alarmed and called him home. I don't recall any of this, but I really unloaded on him when he came home re: losing the house, bad decisions on HIS part, etc....all stuff I held inside before. I awoke about two hours later, and he took me to the doctor, but not before he told me what I'd done and said. I was MORTIFIED. I don't recall a THING, and I guess I'm glad.
One good thing came out of it; there have been times when my husband would have a few drinks and just act like an @ss. Erica told him, "This is how you are when YOU drink too much. YOU deal with her. She certainly deals with YOU." Since then, he limits himself to ONE drink. Guess he didn't realize.
MORAL(s) OF THE STORY:
1. Never, NEVER mix alcohol and meds. People DIE like this. I can't believe I did that, knowing full well it was dangerous.
2. If you've got resentments, best to get them out in the open when you are calm and SOBER, because from what I heard, I'm thoroughly embarrassed by the verbal abuse I heaped on my husband.
3. If you drink, think about recording yourself after you've had a few. You'd probably be shocked at how you react.

OKAY, Y'ALL ARE FREE TO BAWL ME OUT NOW. :oops:

MARYCAIN
12-07-2006, 06:14 PM
Hon. you did such a good job bawling yourself out, what's left to say? Just don't feel too bad about it - extreme pain can make the most rational person in the world go cuckoo. If there's any blame here, put it on the doctor's office for not calling you back. I hope you expressed your feeling to the doctor, and that you are now well provided with pain meds.

Quickmelt
12-08-2006, 07:11 AM
Before I was diagnosed with Lupus 5yrs ago, I was a regular smoker and occassional drinker and I quit all that when I started to have a flare. But I don't know if this is because I do have an "inactive" lupus nowadays I allowed myself to have a drink and smoke occassionally. I just take it in moderation for I don't wanna kill myself and waste all the medications I'm taking.