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View Full Version : I am looking for some suport



tatiana
08-25-2004, 04:49 PM
Hi,
I am 24 years old, and was diagnosed with Lupus about two years ago, although after i found out what all of my complaints meant, i realized that i was symtomatic since high school times.
I did an online search this afternoon, and found this website. I read a few of the messages and literally began to cry! I have talked to my doctor, and researched the disease online, but i have never really heard from someone who had the disease. I talk to my family, and they are great, or at least try hard.. but its not the same. I have never talked to anyone else that has the disease, and i never really wanted to. My family is very insistant that i think positive, and believe that if i dont think about it , then its not there. Which is of course insane! because it IS there!
i just moved to a new city ( for work) and i dont really have anyone to lean on... and besides, when i do call home, i feel that i have to say that i am always ok, otherwise they worry too much, or just tell me to be positive...
I guess what i'm after, is someone telling me that its ok that i cant just think this away. I have been having a really hard time these last few days, today at work i felt that i could barely move, but i have recently taken some days off, and didnt want people questioning me too much. So i worked through it, which of course agravates everything.
Overall i'm just very tired. I go to work, and then come home, and just watch tv until i fall asleep... i wish i could do more, but i dont really have the energy or desire for it..
I'm just rambling a bit now, but i was hoping that someone could share something with me, and allow me to share more with them.
thanks...

Saysusie
08-30-2004, 08:04 PM
Hi Tatiana :lol:
Welcome to our forum. First and foremost, let me say that YOU ARE NOT ALONE!! I know how scary and lonely this disease can be, but rest assured, there is always someone here to talk to and always someone who understands what you are going through.
You are correct, you cannot think this disease away, nor can you ignore it. I think that both are coping devices for your family because they are experiencing fear. The best defense against fear is education. You are right to try to find out as much as you possibly can about this disease, its symptoms, medications and treatments. In that way, you can help your family to better understand what is going on and alleviate some of their fears.
We are here to offer you support, understanding, compassion and information and, again, to make sure that you know that YOU ARE NOT ALONE.
I wish you the best of luck and stay in touch! You will always find someone here who understands what you are going through and who is willing to help you!
Best Of Luck
Peace and Blessings
Saysusie

JenHa55
08-30-2004, 10:16 PM
Hi Tatiana,

Welcome to the world of the Lupies, that's what some of my Lupie friends call ourselves as we insist we are Lupie as well as Lupus sufferers. I do suggest finding a Lupus Foundation or association of some sort in your area where you may be able to meet others in your area with the disease. I found that very helpful. I speak with those in my support group and meet others by volunteering with my local chapter and have support online on this message board.

Because, I find anyway, it is extremely difficult for your family to truly understand what you are going through and what you are talking about. I'm 28 years old and my Mum, God love her, goes into denial constantly about my illness. She is constantly suggesting I have the flu - my latest response to that was "Wow Mum, I think they should do a study on me, because a flu lasting 10 years and through annual flu shots is pretty powerful stuff." I just have to have a sense of humour about it so it doesn't drive me nuts, it's just her way of coping!

I do tend to have a sunshine approach to it, not because I think it will cure my disease and to make it "go away" but more for the quality of my life and building fun and loving memories rather then being down ALL the time. I have my down days for sure, but if I can at least crack a smile and some laughter, it sure helps!

Hang in there and you know what, you are entitled to have down days! Lupus is not like winning the lottery or something, it does give you a rather challenging life, but can still be a wonderful one.

Hope that helps!
Jen

Missy
08-31-2004, 10:31 AM
Hi, Tatiana - just wanted to say welcome and that I am thinking of you, too. My sister went through a lot of depression when she was first diagnosed, and my Aunt, who is a counselor, says this is very common with people with chronic pain (even some that work sooo hard to not be dpressed), so make sure to seek professional help before things get too bad, if it's a problem for you.

With my diagnosis, I tried to learn from my sister's experience, and I share what my doctors say with my family and friends, so that helps a lot in hoe much they understand. I've also sent them information from the Lupus Foundation. Now everyone around me is pretty well educated about Lupus, which I think is a good thing!

Good luck with everything!

Jen, if you are in Vancouver, BC, we live pretty close to each other, though I am in the US!

Missy

tatiana
08-31-2004, 12:08 PM
thanks so much. I really apreciate everyones kind words. I have been depressed lately. I recently had to work extra hours for a whole week, and the extra effort and stress really got to me afterwards. I felt unable to get out of bed, and when i did, my movements were minimal. it was a combination of being so fatigued and at the same time my knees, hips, and even elbows -well, everything felt so sore, and it hurt so much to move.
At the same time, i feel that i should'nt complain. My case of lupus is not too severe. I dont have organ issues, and my main problem is joint pains, heaaches, and some light sensitivity. I do also have 2 anti-bodies that are trying to clot my blood, so i'm on aspirin. Asides from some other somewhat mild symtoms, i do ok. At times i feel bad for even complaining, because you hear of so many cases where people are so much worse off. i really do feel guilty complaiing about anything. Sometimes im the one trying to pretend that i feel bad because of a cold, or the flu.. i even start reviewing the copies of blood work that i have, thinking that maybe i dont really have anything, and i just make it up ( my body tricking me). i have gone so far as to make a list of things that i cannot refute (only one maybe two) and everything else that could possibly be all in my head!
its so frustrating! on some days i can accept it, and feel fortunate, on others i feel all guilty, and try to disprove it..
has anyone out there gone through anything like this?
i cant really talk to anyone i know about this, and i am not in a financial position to seek prof. help. I also dont have a car where i live now, i have to rely on public system for trnasportation. Besides, going to a local support group is out of the question since right now i am in a "feeling guilty, maybe i'm making this disease up" phase..
thanks
i guess i'm just hoping to hear if anyone else has gone through this.. that might help i think

JenHa55
08-31-2004, 12:17 PM
Your symptoms are no less "worthy" then those who suffer from kidney or heart trouble because it's all relative. The fatigue is REALLY difficult to deal with, especially if you have to work or you have children and just to carry on with daily living.

A good friend of mine really struggles with Lupus and depression and the doctors are trying to help her with her depression and have put her on DHEA to help with her symptoms and depression. Possibly talk to your doctor about that or other medications that can help with your energy, your symptoms and your depression. I know medication and suppliments are expensive, but quality of life is pretty important too.

We all go through periods where you just feel like, how the heck am I going to do it all today, I'm too weak. There are days that I'm walking into walls I'm so weak. Work made it a lot worse for me as well, you might want to look into a job where they take your disability into consideration. There are organizations that have advocates to help you find the right thing for you. In my city there are 3 non-profit organizations to help, look in your city!

Use the resources that are available to you. Talk to your Lupus Foundation about advocates and talk to them about support groups and getting more regular information about Lupus.

You are NOT alone!! Do not be ashamed of your struggles, recognize your limits and work with them.

Good luck,
Jen

Missy
08-31-2004, 06:36 PM
Tatiana - Yes, I have felt guilty about my Lupus, and I have kidney problems! But, I mostly ONLY have kidney problems, so sometimes I feel like I don't know the pain and suffering other "Lupies" are going through. And some days I feel so good, I feel like I don't even have Lupus - then other days it totally kicks my butt. So, if we both feel a little guilty, we can cancel each other out and have no need to feel guilt at all, ok? :lol:

You know, my friend (who has no health problems) suffered depression and was not in a financial position to get professional help, either. It took her a year to realize she just had to prioritize it and find a way to pay for it. (Maybe she could only deal with me asking if she was getting counseling for so long.....). Also, my sister saw a therapist, who billed her after her insurance ran out (she was in college, too, so sooooo poor) and the therapist told her to pay her back someday when she had the money.

I hope some of this helps. Also, I don't think you should avoid support groups at all in your current situation. It sounds like you are in need of finding one! That's what they're for....giving support, no matter what your current feelings are. And chances are, you will find people that have been in your shoes.

Missy

carlau
09-06-2004, 02:03 PM
Hey Tatiana
sending you some love! I'm glad you found the message board. i have been in several online groups for lupus through the years (i've been diagnosed since 1993) and it is a great comfort to me to not have to explain or deny or hide or downplay what i go through ehre. everyone knows!
I can relate to the guilt and denial. i doesn't overwhelm em anymore but i still have those feelings sometimes. esp now that i finally got disability.
it sounds like you should qualify for some govenemtn assistance, maybe even partial disability.
i think you may want to try applying for disability and go to vocational rehab after you apply, so they can see that you are able to work, btu that it completely saps you of all energy.
you may even qualify for food stamps, and medicaid. i got medicaid and it paid for all my dr visits (though i had a choice of ONE docotr in my county, but hey beats nothing!) and pays for all ym drugs- completly PAYS for them. no co-pay.
so i get my Blood pressure drugs and Paxil (antidepressant) every month, no cost. there is help available and you sound llike you need it and are qualified for it. all you have to be is broke and sick. and get a dr to back up your claim of illness.
i know it's hard to swallow pride and denial and go ask for help, esp if you think others need it worse than you do, but you can't continue forever working til you drop every day.
it took me 10 years to finally go get help. hoping you go sooner
love carla

kkgadro
09-28-2004, 06:27 AM
Hey there!
I have had lupus for 16 years. It started getting bad about three years ago. The pain is very bad. I have three children and getting them ready for school in the morning is the worst. I go to work in pain and tired and by the end of the day I am wiped. I know it will get better. I go home cook for the family try to do some chores then crash in the bed with the TV. No big deal. Its the lupus way.. But only for a while. So you have to rest a little more right now. It will get better. I get very frustrated because I normally am an very active person. My mind moves faster than my body. I havent spent time out and with my friends in awhile but they will be there when I am ready. Get your head up. I promise things will get better. You just need time for you right now. Soon you will be your active self again. Please watch what you eat. caffiene, sugar, beef and potatos are bad. I started taking milk thistle for liver and magnesium and selinium vitamins. It has made a difference. Hang in there.

carlau
09-28-2004, 05:37 PM
i also take milk thistle to clean out my liver
and i take fish oil daily and it really reduces inflammation in my joints and also helps regulate my mood.
food and stress can be a big aggravating factor- the good enws is that a positive experience can boost your well-being mroe thana negative experience can squash it so if you can, try to get together with friends and folks who are supportive and do somthing fun!

ANewDay
09-28-2004, 08:57 PM
Hi Tatiana! I was reading your posts and I must say that you have gotten a lot of responses here. When I was first diagnosed I came here and received so much support. It kept me from going nuts. I honestly thought I was going crazy; I was angry, scared, and most of all in pain. Every single muscle ached. There were times I could not plant my feet on the ground in the am. In my mind, I was just gaining weight and it was causing me to have lower back and muscle pains. What you are encountering is I guess "normal". My family is great and can be supportive, but they really don't understand what having Lupus is. I get these comments; You always have something new each week; or Gosh, you are always tired; or You are in such a lousy mood; blah blah... At this time I have no organ involvement and I am doing well; so I understand about not wanting to complain but it can be so unbearable.... SO COMPLAIN, ITS OK. I just learned that this week and I have been feeling a lot better. I dont know if you are on meds, but I take hydroxychloroquine 2x a day and when my muscle pain is unbearable I take vioxx 25 mg for two days straight. I am usually almost normal after that. I also started YOGA. Stretching has helped me tremendously... it really works. I could not afford the classes so i brought the book and DVD from Barnes & Noble for 13 bucks. Oh and warms baths has also helped. I hope that some of this information has helped you. If you would like to have a pen pal, just let me know.. Feel better.
Angie

tatiana
10-04-2004, 12:11 PM
I read the paper and CNN confirmed it, Vioxx is off the market. It was proven to cause stroke or heart realted problems. So please take notice all of us that take vioxx!
That leads me to the latest adventure in lupus land.. my shoulder.. i was wondering if anyone had experienced this or if they know about it. My left shoulder and arm have been hurting for the last three days. At first i though that maybe i slept in the worng position, but the pain is getting worse. i cannot really define it except to say that it hurts when i lift up my arm and i cant even lift past a certain point. it feels like its muscular.. but i'm not sure. i can slowly and with support of my other arm, or by holding a wall and moving my arm up, get it all the way up. but it hurts in that position. also when i bring it back down, or sudden movements. since it hurts to move it too much, i try to keep it still, or minimize movement.. but i notice that tingling feeling, like if it fell asleep, or if it was waking up...i'm not sure how else to describe this, except that its very painfull when i move it, and my movement is definetly limited. lets just say that it took me about 5 minutes this morning just to put my shirt on before heading to work.. well, thanks again for all of your help and support. Today started badly, but after reading some of the posts here i felt better, i always forget that there are others who feel the same or worse, and taht they are willing to listen and help. its nice to have a place where to share all of this. thanks!

kkgadro
10-04-2004, 04:18 PM
Hey there!
I am having the same thing! For the past 2 weeks I cant move my right arm. It hurts so bad. Mine feels like the shoulder is going to break if I move it. It also goes numb. I was told some of this could be connective tissue disorder. I just know it hurts. My bra strap hurts over my shoulder. Warm baths have been helping. Some easy massage has helped a little. I hate to hear you are going thru this too. When you move other parts of your body does it ever feel like they will break? My toes, wrists, and elbows do this alot. Please take care....it should pass soon...mine always do. Patience and time....thats the lupus way!