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| *Women health>>>Lupus |
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 鈥?Get immediate support from others like you 鈥?Create and share an anonymous journal 鈥?Learn about treatments and ways to cope 鈥?Get recommendations of medical professionals Recent Discussion Topics 鈥?very very short survey 鈥?Fight or Die? 鈥?Doctors 鈥?depression..stress...fear...lo... of control Join Our Community http://www.lupus.org/newsite/index.html... http://dailystrength.org/support/muscles... 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! |
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