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Castell
08-01-2012, 09:12 PM
[WARNING: BRUTAL HONEZTY AHEAD... OR MAY BE IS JUST SOMEONE DEPRSSED]

Is there any good reason? We are going to die anyway. Why not avoid all that pain and just die. I don't feel too much now, just pain, and my imagination and througs are fading away too. And statistically speaking, is just going to get worse. Im speaking to people without kids. And please dont say that you are an example of something, we are only example of bad luck (and bad choises in some theories). Where is the point where life is an experience that can be enjoyed and where is the point where we are slaves of our survival instinct?

The only good reason i have is that mom will cry too much, but i dont feel strong enought to wait until she pass away first.

We are a minority between minorities, so the develpment of a cure is not very likely.

Just for the sake of research, i will mention here that i firmly believe that mixing pot with alcohol plus (later on ) strong stress activated the lupus in me, a 23 year old man.

tgal
08-01-2012, 09:25 PM
First off, why do you think we are all going to die? Many many people here ( and elsewhere) live long productive lives with this diseases. It doesn't have to be a death sentence if you take your meds an get it under control.

I really think you need to speak with someone about what thoughts you are having because it seems much of your information is incorrect and talking to a professional might make you feel better

steve.b
08-01-2012, 09:53 PM
when i was first diagnosed.......
i also had a dark outlook on life.
the more i have learnt about this desease, the better i feel about it.

life can go on with lupus.
it is not the life i wanted...... but it is a meaningful one.

the impotant thing is to get te right balance of medications.
i am not just talking about plaquenil etc.
i also mean suppliments and whatever else your body needs.


life is an ebb and flow.
move with it,
adjust where required.

AND ENJOY IT.


i am not ashamed to say i need depression medication.
i used to be, but i realised i need it.
admit it and move forward.

find your balance, and start to enjoy your life.
you may not need what i need, but talk to a professional, and find out.

jmail
08-01-2012, 10:43 PM
I could tell you a story about alcohol... but it's a stupid one, 'cause I did it. But that's the past. It's also a success story. It's been over 20 years now since I drank alcohol. Stress can also do a number on you. I went back to school 20 years ago, and learned all *kinds* of stuff, just to learn it. I enjoyed the experience. I got into computers, when I originally went to do music. I also practiced my guitar more often (not that it did my skill level any good... tic), and learned to appreciate music from *my* perspective, not someone else's. Like Steve says, talk to someone. Bounce some more stuff off the folks here if you want to. btw, most folks I talk to don't know what CVID is. When I tell them, they think it's like AIDS, or that I'll infect 'em or somethin'. If I say "lupus", they usually at least don't go runnin' away from me *right* away... Therefore, lupus is more familiar to folks, and gets more "respect" than CVID... |;^)

kim,l
08-02-2012, 01:37 AM
i am sorry your life feels hopeless at the moment. we have all been there with the depression. i agree with everyone else you need to talk to someone. and you may need anti deppressants. there is no shame in that. but alcohol is not the answer i speak from this from are parents perspective i have a son who is a alcoholic and suffers depression. i see what it does to his body and he has not got lupus. i have lupus and my 24 year old daughter has it and it is hard on her. she suffers from ptsd and depression and everyday is a fight for her but she does . i know life can overwhelm you and lupus changes us but we learn to adjust. if anything we value everyday even more. life is precious young man please believe yours is to. there will be good days and there will be bad.but with the right support you will get through this. and we will be here if you need to vent. please take care of yourself.

Derrie
08-02-2012, 06:39 AM
Hey Castell, I can't write a lot right now because I am trying to take a break from my pain medications, and -- ironically in light of this thread -- I am in quite a bit of pain. But I wanted to let you know what has worked for me in dealing with my pain. No, not any kind of drug...

I see a chronic illness and chronic pain counselor. She is fantastic. She is a LCSW (licensed clinical social worker) who is associated with our local hospital (I live in a small town so we have just her-- other places, I am sure, have lots of folks who do this). She specializes in working with people who have had stressful diagnoses like lupus or cancer. She also works with people in chronic pain and who have health anxiety. Anyway, she has been great. In addition to helping me work through how to navigate the health care system and assisting me in figuring out how I want to make my medical decisions (ie, taking a break from pain meds, like I am now), she also helps me figure out ways to enjoy life despite my pain.

I still get upset sometimes. I can't believe I am stuck with this for life. I mean, what bad luck. But finding a professional who is trained to help me navigate all this has made a world of difference. Really, please, pretty please see if you have similar resources where you live.

rob
08-02-2012, 07:37 AM
I tolerate the pain of both SLE and MS because I discovered that I'm not in pain 24-7. I have a couple of good relatively pain free days a week usually, and that's enough for me.

In regards to dying, I've had to make decisions that involved life and death. I've seen the results of those decisions, and I've witnessed the death of a person who meant the world to me up close, face to face.

I've seen death, and I want no part of it. I don't give a s**t how bad I hurt, I am not giving up or giving in to the pain or these diseases until I've lived the better part of a century. I'm going on 45, and yes, I fully intend to make it to 100, or as close to 100 as I can possibly get, pain or not, Lupus or not, MS or not.

Rob

jmail
08-02-2012, 10:07 AM
We almost need a "Thank All" button just for this thread...

Castell
08-02-2012, 12:26 PM
Thanks everyone for sharing your troughs.

n.mac
08-02-2012, 07:27 PM
I agree with jmail-alot of good thoughts trom great people!

Personally I too suffer pretty much every day with pain and it is frustrating trying different meds and not finding one that seems to work however adjusting my activities and following alot of good practices that I learned here has helped a great deal.

I just keep on keeping on because it sure beats the alternative!

Take Care Niall

vicky62
08-03-2012, 03:04 AM
I am new to this board and was coming here for support somebody really has giving you the wrong information for sure Castell and please dont take this wrong but that attitude is only going to make pain worse ( talking from experience) I would like to tell you a little about me about 6 months ago I started having strange pain a itchy forehead joint swelling my hands hurting so bad I couldnt type let alone do dishs. Well making a long story short was dianosed with Lupus by a specialist. I dont know much about this disease. Well anyway one day I had a appointment with a nurse practioner who told me I had 5 to 7 years at my best I started crying but quess what she did not know what she was talking about. I asked my rematologist (spelling) and he laughed and said tell that to my 90 year old patients. My doctor has gotten my pain undercontrol and with this group of nice people I will learn more. Your not alone with this only if you choose to be. I have a 8 year old boy and I have my whole life with him and I am sure some day someone will tell him lies about this disease but he will be reading things here with me so he will never be scared. Its hard on your family too not just you. I have had friends cry with me and get mad with me not because they think I am going to die but because there is so much to learn and it is scary. But please dont take your life it really has a lot more effect on people then you think. I am not going to tell you I am not scared I am but the unknown is always scary and guess what I dont like to write but I am going to learn to this also. I have not read any post here where the people do not have huge hearts and I love being around people like that and I will be able to find out so much information here to help me through bad days and guess what it is okay to have a bad day

Corella
08-03-2012, 07:11 AM
It is very easy to be overwhelmed with the Pandoras box that is an auto immune disease, not knowing which symptom is going to pop out of that box and slap you each day and if your symptoms are unmanaged then even easier to become depressed.

Firstly I will say that you are worth investing in - emotionally, with time, with money, you are worth taking an effort for - you are entitled to your life.

Secondly I would write down all of your symptoms and speak to your specialist about how best to manage them, it could be the slightest tweak of medication.

Speak to him about your emotions as well - he can ascertain if you need help in that department, even off loading to a counsellor can lighten the emotional load so to speak.

Pain can hinder our decisions, make everything more difficult and harder to tolerate but above all remember one thing - life is a gift and it is rude to refuse a gift, try looking at it from another angle and adapt to a new kind of normal because there is help out there for you and you do not have to do this alone.

ruziska
08-03-2012, 08:41 AM
You are right- we are going to die. Everyone who is born eventually dies. Nobody gets out of this life alive. Yes you are in pain, I get that. People who have lupus deal with pain. People who stub their toe in the middle of the night deals with pain. Pain is a part of life. At one time or another each and every person who has ever lived has dealt with pain. Pain comes in many shapes and sizes. Pain sucks. Lupus sucks. Disease and illness suck.

I used to have your attitude. Oh jeez did I ever! No disrespect to you but I was on the all time great pity party wagon.
And it sucked. I was miserable to be around and miserable to just be. I got tired of it. I got tired of "poor pitiful me". I got tired of feeling sorry for myself. I got tired of focusing on would I cound't do, what I couldn't have, what I couldn't be. I figured out what I could do, what I could have and who I could be and I started doing and becoming. I CHOSE to be happy. Free will. You can choose to be miserable or you can choose to be happy. Do I still hurt? DUH. See my earlier thread about paying for it after a fantastic night of rock and roll. Would I do it all over again? IN A HEARTBEAT! Was it worth it? Without question. But I didn't let it stop me. I knew I'd hurt the next day and apparently the day after that :( but I didn't let it stop me and I'm not going to. I'm going kayaking in a couple weeks. I'll slather myself with 110+ SPF sunscreen and be covered in SPF clothing head to toe and look funny but I'm going to have the time of my life! It makes me happy. I'm living well in spite of Lupus. I have Lupus, it doesn't have me. It's all about mindset. I'm not new to this. I've had Lupus since I was a kid but do to my father's attitude towards doctors (but I won't go there). I've busted most of my bones and having a great time (well I was until I broke something and that took the fun out of the moment) but I kept on going! I've broke horses, grass skied, raced cars, horses, bikes. I've raised hell and then some. I've paid for it dearly too and would do it all over again if I could. "Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways - Chardonnay in one hand - chocolate in the other - body thoroughly used up, totally worn out, and screaming "WOO HOO, What a Ride!" I don't know who wrote that but are they ever right!

I'm sorry you are in so much pain. I hope you find relief soon. There are better days ahead. Please take care of yourself

Castell
08-03-2012, 11:12 AM
Is not the pain that I am most angry about, is the lack of energy (aka fatigue) and the lack of emotional response to all the things i used to love. It is messing with my brain really hard.

Thanks for your words.

jmail
08-03-2012, 12:21 PM
... I've broke horses, grass skied, raced cars, horses, bikes...

... grass skied?... Sounds interesting... How exactly is that accomplished? Internal combustion engine, sail, or just find a hill? Wheels on a ski? Or au naturale?... I'm thinkin' Dirk Pitt might like you, ruziska... lol

Say Castell, what kind of blood work have they done on you thus far? Lupus can not only cause plain old "fatigue" and exhaustion, but it messes with the body's whole system. My brain seems to be my lupus' primary target, but it's all in my head.. (bad joke, sorry, won't happen again) Consulting with the doc and finding the underlying stuff is very important to putting lupus "in the box". Not a lock box, but a strong enough box to hold it at bay for a while. And it seems to cycle in and out. With me, anyway.

Castell
08-03-2012, 12:57 PM
I know, It have messed with my stomach: i have a big ugly peptic ulcer and my joints are killing me; also can't sleep, also burning sensation on upper body skin (including face).
The ANA is positive and the other tests are negative but the symptoms give it away (the butterfly rash is one of them)

panda_lupo
08-03-2012, 03:49 PM
Castell,

I had a friend pass away very recently from a suicide and let me tell you …. That is not the way! I saw firsthand how his immediate death affected everyone down to his father at the funeral screaming “WHY WHY WHY” on his knees in front of everyone. I would hope you wouldn’t want to break your momma’s heart.

Only you! And you only can pull yourself out of this funk! You have a supportive Family here at WHL and you can talk to a professional about those negative feelings. Auto Immune disease can be very tricky and as corealla said a Pandora’s Box.
We have all been there and we have all survived and found something to live for! Lupus is not a death sentence it’s just an invisible weight chained to our leg. We are extraordinary people living life to fullest as much as we can and we continue the good fight and will fight these diseases no matter how much pain and we will be here to continue to support each other through the good and the bad.

PS

It takes one step at a time and you need to take the first step!

Cheers

ruziska
08-06-2012, 07:49 AM
snow skis, poles, bikini, lots of vodka and a really big hill

Derrie
08-06-2012, 08:06 AM
snow skis, poles, bikini, lots of vodka and a really big hill

Why, oh why, do we not have a "like" button on this forum?

Because "thanking" Ruziska for the post seems a little funny.

But what the hell...

A. G. Moore
08-06-2012, 01:48 PM
How can anyone read that message and not respond? You're young. One reason to endure the pain is because there is still possibility. You don't know what your future might bring. Tomorrow you might meet a doctor who successfully addresses your symptoms and leads you into remission. Lupus attacks the body, and the mind is just another part of the body; until inflammation is under control, you should be wary of extreme emotions and strong impulses.
I don't know who your doctor is or what kind of treatment you're receiving. I can tell you, however, that I wandered around for more than ten years, and saw at least eight rheumatologists, before my life turned around. Once I found the right doctor, I was given some measure of control over my disease. I'm not saying you will have the same experience—but the possibility exists that you will as long as you exist.
One thing that got me out of trouble when lupus was messing with my head was finding a psychiatrist who specialized in diseases that affect the brain. She had done research, specifically, with lupus. She helped me locate a very smart rheumatologist. As he effectively managed the lupus, there was an immediate improvement in my mental health.
I hope you connect with someone, as I did, who can provide a bridge to effective treatment and better health.

magistramarla
08-06-2012, 03:27 PM
I've not been here for a few days, so I'm just now reading this thread...
As others have said, there is hope for the future if we hang in there and keep supporting the research. My husband and one daughter are both scientific researchers - she's a neurobiology researcher. They are both continually staying up on the latest research that might help us, and they send links on the information to me. I have hope that there is going to be a break-through that will help us. It might not be research that is targeted at Lupus. It might be a break-through for Parkinson's, or something else that is an AI or a neurological issue, but there will be a cascade effect of finding cures or treatments for the stuff that we're dealing with. It might be stem-cell research or it might be the research on how the brain works that Heather is involved in that does it. That's why I support ALL medical research and science education in general.
I understand frustration. I'm frustrated that I had to give up a job that I loved, but rather than dwelling on that, I've gotten involved in volunteer activities, and I do as much or as little as I feel like doing.
I'm frustrated that I can no longer drive on the highway - I've always loved to drive. We now live in a "small-town" area, and I've gotten used to using the back roads, and I get along just fine.
I'm frustrated that I can no longer pick up and carry a grandchild. However, I've learned that I can still sit and hold, rock and soothe a baby just fine if someone hands him to me. There is an advantage to this, too. I can't be expected to carry him to a changing table to change a diaper, so I get to hand him over to someone else for that!
I've found that having AI issues has changed my life, but in many ways it has been a good change. I've gotten to slow down and smell the roses, and that's not so bad.
Hugs,
Marla