Saturday, April 24, 2010

I am sick with Lupus and need help! Can anyone answer my questions? I would like to find someone to talk to!?

I have been sick afflicted with a mystery illness since I was 13. By the time I was 18, I had a heart problem, liver disease, a ruptured Gallbladder and Peritonitis (infected abdominal cavity) from which I almost died. I am now 23. For the past three years I have had skin rash, mouth sores, nausea, bad joint pain in my knees and shoulders, fevers, tremors and left-side arm/hand weakeness. In the past year I was in the ER for four bouts of Pleurisy, fluid on the heart and Pnemonia.My doctor told me I had Fibromyalgia and Lupus. Now they are suspecting MS (Multiple Sclerosis) as well. I am depressed and I can't cry anymore. I can't work and I am tired all the time. I take Vicodon, Percocet, Promethazine and Naprosyn. I still don't feel well and I am suicidal. I have a good support system but I am tired of being sick. I want to feel good and be young. I want the opportunity to have children and get married. I have a wonderful fiance and he loves me. Can someone give me advice? Hope?|||Lupus is a thief that steals energy and health, hopes and dreams, and plans for the future. We do get sick and tired of being sick and tired. And I, too, have been suicidal as a result of my lupus losses. I'm not that way now. One of the hardest things is the loss of control. But you do have some control. I am not talking about the power of positive thinking stuff or new age think yourself healthy. I am talking about some positive things you can do. So here is the short list. Hope it helps.





Stay out of the sun.





Learn to handle stress. Meditate. Do small amounts of moderate exercise like walking.





Strive for a healthy diet. With each thing you choose to eat ask yourself if it creates health or destroys it.





Journal. Write for 20 minutes a day every day.





Learn all you can about your medical condition.





Do some kind of spiritual or inspirational reading in the morning and at night.





Do good for others. It improves the world AND the functioning of your immune system. What can you do? Write a letter, make a phone call, listen.





Mild exercise reduces pain and increases energy.





Set reasonable small goals.





Change your thinking. You can't control what is happening but you can control your reaction to it.





Make a list of how much of you still DOES work.





Give thanks for small things-hot water, electricity, a roof over your head, food in your belly, a bed in which to sleep. Half the world does not have these things.





Get professional counseling. A good way to find the right counselor is to call an oncology clinic. Their counselors understand our losses.





Go to www.lupus.org and click on the take action link to email your senators and congressional rep asking them to cosponsor the lupus REACH amendment.





Get others to email them too.





Learn to be fully here in the present moment, instead of in your head thinking about the lupus. Thich Naht Han is a good author to start with. Try Miracle of Mindfulness or Peace Is Every Step.





Resolve to comply with your treatment regimen.





Join a support group. You might get support AND you might be the one to give it. Find support groups at www.lupus.org|||"Where there is life the is hope." Terri Schiavo





I would say I know what you are going through but I don't. What I can say is that at times in my life I have been severely depressed and suicidal as a result.





What I can also say is that I am glad to still be alive. Since these times I have experienced a lot of things, many of which made life worth while many times over.





As for the practicalities of your condition I cannot guarantee results but it seems the modern pharmaceuticals have not provided much relief. In my experience pharmaceuticals can actual make things worse. I suggest reading up on alternative therapies including nutrition, meditation, and body work.





One of the most powerful meditations you can do is the meditation of loving kindness. It entails visualizing someone you love, someone you have issue with, and yourself as happy healthy and enlightened. The basic principle is that energy follows thought. If you can do this in a lucid way it will influence the aforementioned benefits onto all parties.





Finally I believe your spiritual life can be of help. I know it is difficult to believe in a benevolent higher power and suffer the way you do, but I believe having a relationship with God can not only be soothing, but be enlightening at times.





I sincerely wish you alleviation from any needless suffering. I empathize that you are going through what you are. Just keep in mind all things in life change, and in time I believe you will find pockets of relief and hopefully long term solutions.|||You are in bad shape! Go to Wal-Mart and by a gallon of Aloe-Vera Juice and drink it religiously. Mix with grape juice to make it taste good. It will strengthen your immune system!|||Have you seen a doctor yet??


(actually, that was a dumb question)


I'm not quite sure what to do, but that's extremely serious. If the doctor tries to brush it off, you shouldn't agree. I'm really bad with medical stuff. There should be someone out there who can help, though.


Best of luck to you, and I'll be praying for you.





From ~ Kidalanna|||There is ALWAYS hope; you are very young so time is on your side, and they have made great strides in the treatment of both lupus and fibromyalgia. These sites will get you started and there are support groups locally and online for both. All my best and God Bless.











Lupus Foundation of America, Inc.


2000 L Street, N.W., Suite 710


Washington, DC 20036


Phone: 202-349-1155


Fax: 202-349-1156





Fibromyalgia Support Community














• Get immediate support from others like you


• Create and share an anonymous journal


• Learn about treatments and ways to cope


• Get recommendations of medical professionals








Recent Discussion Topics


• very very short survey


• Fight or Die?


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• depression..stress...fear...loss of control











Join Our Community|||Ash,


Please hang in there...I do not have Lupus, but have had a number of issues that have plagued me for years. I know the whole downward spiral you feel of never feeling well, what use am I, I have no life, etc.


First of all, I am happy that you have a wonderful fiance. That will help you know that you are loved. I pray that he is supportive and understanding. Next, there are plenty of support groups on line. You can try:


http://www.wehavelupus.com/





http://www.lupus.org/support/onlinesuppo...


http://www.mdjunction.com/lupus





If you do not care for these, do a search for "lupus online support groups. From there, I chose the above three. I hope you find one that you like.


I have celiac disease (intolerance to wheat rye and barley, extremely long list of foods I cannot eat!) and I belong to three online support groups. I find them very helpful.


Please, do not give up. Remember your dreams, that will get you through. Keep a list of all the things that you want out of life, even make a dream poster where you cut out pictures from magazines, like an ocean view house, babies, places you want to travel, and of course a picture of your fiance. Life is worth it, place your poster where you can see it when you wake up and when you go to sleep, or when you are bedridden for the day out of pain you can lie on your side and stare at it.


Another thing, keep a "grateful journal". Every time you are down, write down all of the things you are grateful for and even re-read things you wrote before when you can't seem to write anything at all.


I pray that things will turn the corner for you. Keep your mind positive, that is half the battle.


Best wishes and take care!|||I am sorry you are going through all of that. I have Lupus and been having it for years and i have been through alot. I have almost died a few times,but i made it and you will too. Don't give up hope. There are several sites you can go too. Lupus Foundation of America. or Lupus.com.. Or you can email me and i would be glad to talk to you. Take care....|||Hi there,


I just like to let you know that you aren't alone in this situation, I also have SLE %26amp; I got it when I was young, so it was rather unusual.


For the past years It has been difficult due to the flare up of lupus I almost die %26amp; I lost my kidneys but I had my transplant. I'm also only 24, just want to let you know that never give up, and don't stop believing that some day everything will be better.


Just stay positive, I know it is difficult do so but Lupus is all about Mind Power, if you can take control of what you are going through and knowing what you are up against in whatever situations you are in. Nothing is impossible if you have faith %26amp; hope in yourself.


No one else can make things better for you but only yourself, it is our choice to make the worse situations a better place and future.


In times, I reminded myself that I have a second chance of life, so I attend to live life to the fullest, I hope you do so too.


Don't give up, take care.|||I am so sorry that you are feeling so ill. When I finally found out what was wrong with me, I was actually glad they found something. But it took a blood clot blocking off my left lung and left pulmonary tree before my MD would admit I had a problem. Since that day, I've had alot of ups and downs. Most of the time I try to think about the things that I can still do instead of what I can't do anymore. I'm not saying that I have that positive attitude everyday. But I try. And I know God holds my future. How ever short or long it may be. Just always remember, you didn't do anything to get this disease. It's not a punishment from God. We simply live in mortal bodys that get sick. I pray every morning when I get up. Sometimes that prayer changes a little. On good days I pray, Lord, thank you for getting me up this morning. On my bad days, Lord, please HELP me get up this morning. I hope I've helped some. It's not easy, but it gets real bad when you think your in this alone. Honey, your not. email me anytime you need to talk. God's Blessings. Martha from KY


hml@newwavecomm.net|||Hi Honey, I have also had Lupus since about 13, sadly it was the late 70's and early 80's, they didnt know much. I was having seizures, I was ill a lot, and had mystery symptoms that would come and go. I'm almost 40 now. Like you I was in and out of hospitals a lot, at times I still am. But went on to have 2 healthy , and as they hit their teens typical children. I havent had pleurisy, had mild pnemonia 1x, have dealt with and beat fibro, been tested for MS, beat deppression, been married about 16 years, rather happily, but I can't work. Though I did finsih college and worked through my late 20's. Im now almost 40.





I do understand being sick and tired, of being sick and tired, and have felt suicidal. We do not always have the easiest life do we. I own a yahoo support group, one of our younger girls, is actually pregnant right now. It isnt an easy pregnancy, but she's doing it, we have a few teens or young adults, and they do the best they can. They post sometimes, but their moms are very active, and then they hook their daughters up with the younger ones, so we kind of break off. I know a few of the girls well. I was one of the girls. Its scary, frustrating, and seems to be life ending.





About the Lupus/MS, Ive been tested for MS 3 times in 20+ years. It always turns out that its the Lupus Central nervous system flare action acting up. I also have liver issues, in the form of autoimmune Hepatitis, from the Lupus. It has gotten out of control, but I have a good rhuemotologist, and we always seem to get it under control with medication, and even once with cytoxin, which was not so pleasent, but worked.





But there is hope. While at 40, Im slowed, I have a happy marrige, 2 children, a 21 yr old, and a 13 yr old. I do spend the hot summer months a bit down, but unless I hit a big flare, I fight and have been bouncing back, and getting emotionally stronger since 13. So i know it can be done. My advice, never give up hope, fate or faith, new strides are made more and more often. Medicine is getting better. Just do what the docs tell you, find support outisde your family, you have a man who loves you.... let him. If need be let the dr give you an antideppresent, many in our group are on them, its so commen in lupus. But never give up hope sweetie. I never did, and thats how I am where I am today.





Good Luck, and peace of mind


Chris|||Awwweee


That sucks

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