Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Well this is the 4th time I've tried to submit this, so hopefully it doesn't show up later as a bund of discussions. Here goes....
Hello everyone. Ive been posting in this forum and others here at DS since last August, but I realized I have never really introduced myself and described my situation. (I will be posting this in both the Fibromyalgia and Lupus support groups.)
Last year was a horrible year for me, I spent 3 months living in a motel, visiting my dad in the hospital day in and day out until they finally just finished him off. During this time, my baby brother collapsed with a stroke and was DXd with brain cancer. After surgery, chemo and radiation, he died anyway just 3 months, start to finish. My closest aunt then died with some mystery illness and I had two cousins around my age, die with stroke and cardiovascular problems. This was all within 6 months. Its also been hard because Im helping to take care of my mother. You can imagine her grief, losing her husband of 55 years, her youngest son, her baby sister and two nieces. Needless to say 2009 could not end fast enough for my family.
Somewhere in the middle of all that turmoil my body went into shock. Whatever, virus or unknown thing that causes Fibromyalgia, Sjogrens, Lupus, CFS etc. came roaring to the surface for me. I had no idea what was happening to my body. All I know is that it felt as if my entire body was being consumed by this thing. I couldnt even deal with my grief because I was in so much pain.
After a couple Emergency Room trips and multiple trips to doctors, I got DXd with all the things I mentioned in the last paragraph. That was back in August/September and I began trying out different pain and treatment plans. Ive had many problems for many years, back pain, wrist pain, foot pain, migraines, etc. and it was just a matter of all the problems coming together back then that got me DXd.
Im doing better these days. Fortunately for me, some of the medications do help me to maintain a normal life. I still feel pretty crummy most days and some pains dont go away and I still get flare ups where my heart seems to squeeze, my breathing is difficult and it feels like my entire body is burning/tingling along every nerve path.
Anyway, it seems like I have kind of gotten to know some of you reading the various posts and including my input when I feel I might have something worthwhile to say. So just letting everyone know who I am and what brought me to DS.
Have a great day!
Hello everyone. Ive been posting in this forum and others here at DS since last August, but I realized I have never really introduced myself and described my situation. (I will be posting this in both the Fibromyalgia and Lupus support groups.)
Last year was a horrible year for me, I spent 3 months living in a motel, visiting my dad in the hospital day in and day out until they finally just finished him off. During this time, my baby brother collapsed with a stroke and was DXd with brain cancer. After surgery, chemo and radiation, he died anyway just 3 months, start to finish. My closest aunt then died with some mystery illness and I had two cousins around my age, die with stroke and cardiovascular problems. This was all within 6 months. Its also been hard because Im helping to take care of my mother. You can imagine her grief, losing her husband of 55 years, her youngest son, her baby sister and two nieces. Needless to say 2009 could not end fast enough for my family.
Somewhere in the middle of all that turmoil my body went into shock. Whatever, virus or unknown thing that causes Fibromyalgia, Sjogrens, Lupus, CFS etc. came roaring to the surface for me. I had no idea what was happening to my body. All I know is that it felt as if my entire body was being consumed by this thing. I couldnt even deal with my grief because I was in so much pain.
After a couple Emergency Room trips and multiple trips to doctors, I got DXd with all the things I mentioned in the last paragraph. That was back in August/September and I began trying out different pain and treatment plans. Ive had many problems for many years, back pain, wrist pain, foot pain, migraines, etc. and it was just a matter of all the problems coming together back then that got me DXd.
Im doing better these days. Fortunately for me, some of the medications do help me to maintain a normal life. I still feel pretty crummy most days and some pains dont go away and I still get flare ups where my heart seems to squeeze, my breathing is difficult and it feels like my entire body is burning/tingling along every nerve path.
Anyway, it seems like I have kind of gotten to know some of you reading the various posts and including my input when I feel I might have something worthwhile to say. So just letting everyone know who I am and what brought me to DS.
Have a great day!
I guess stress is the universal trigger for these diseases. I gave birth over a year ago and had a very sick infant for many months in the hospital. It was then that I got sick with all these AI issues. I had Graves disease prior to this but it was under control.
I too tested positive with very high ANA and SSB antibodies. So I definitely have secondary Sjogrens and the rheumatologist says "overlap". I hate dealing with this but reading posts of others who are going through the same thing helps me a lot.
You've responded to some of my posts and given great advice. I hope that you continue to feel better with the meds you're on. Take Care!
If anyone can relate to what your 2009 year was like, I can. Mine was absolutely horrible as well but mine started in 2008 when my mother-in-law who we were all extremely close to was diagnosed with terminal cancer. Six months to the day that she passed away, my father-in-law passed away. To say this was the saddest time in our lives is an understatement. We saw them nearly every day and my toddler was so close with them also. My husband did everything for his parents and his loss was/is unbearable at times. The stress of her illness triggered the worst flare up I ever had and Im still not better yet. Also, during this time, my own father almost died and had to have his leg amputated. Stress is toxic for my body and I dont handle it well at all. Its been one stressful event after another in my world as well. I have had several horrible years in my life. I had cancer at 26 and then open heart surgery which broke my body and triggered my APS/Lupus, when I was 30. I have had health issues my entire life but not as severe as they became after my chest surgery (which was to remove a mass which was a thymoma).
I am so sorry for what you have gone thru but know that there is someone else here who totally understands. I would type more but my toddler is screaming for me. Thank you for telling us your story and know we are all here for you.
Hugs
Welcome and nice to meet you although it would of been nice that it would've been in a different circumstance and not our illness that joins us all together. I'm so sorry to hear about how horrible your year was. I really believe that stress is the #1 factor to trigger our illness and flares.
I too had a tough 2009-it was the year I had my worst flare, in and out of the hospital, unexplainable pain, and the feeling that you are being consumed and withering away to nothing. I said my good-byes to my family, I really thought I was dying. It has been 10 months for me since I was dx. with Connective Tissue Disease, but my rheumy says that it can be a mild form of Lupus. I don't feel like there is anything mild about the way I feel. Well, I should thank God, because I can finally move again and do more. For months all I did was sit, and struggle to do the easiest of things. I could not drive, I could not even walk. So now that I can walk, and do more I thank God, but I'm still so sad and I can not come to terms with what has happened to me. My old self is gone. I keep telling myself, I was so dumb to not realize how lucky I was to live a day with no pain. (thus my screen name-want 2 be pain free) Now I have to take one day at a time, and just hope that I don't get worse, that would be the end for me I know.
being on DS has helped me so much. Getting advise and talking to all the ladies has really helped me. DS--made me realize that what I have is real. Many symptoms that I read about, made me realize that other people feel what I feel, and it must be real.
It nice to get the support from everyone here.
Back to you Dear, its nice to know you, and lets just hope that there are better days ahead for all of us. Take care..
Maribel
be kind to yourself, this hurting and grief is not healed in 1 day, and if anyone tells you that time heals, ask, where do they get their experience' for in grief, we are different. love and blessings are sent to you
Thanks again, and everyone have a great day.
Im like you as I dont like to talk about myself and my own problems. Not many people know my life experiences. But, it is so nice knowing that if I do need to vent or whine/complain it is OK and everyone here cares and wants to help. Its not good to stuff emotions so having an outlet like this can actually be beneficial to our health. Use us anytime and you can always message me personally if you want to WMB :) Stands for whine moan & bitch ,lol.