So here I am in my comfy bed , just finished my morning breathing treatment, enjoying my first small cup of coffee since gallbladder surgery and hooked up to my new oxygen compressor....im content:) I was playing on my tablet and wanted share a nice pic from the other day with you wonderful people ! I think its really important to post as many happy pic's as possible to remind everyone to keep smiling no matter how crappie our diseases get :) Figured id update my profile and OMG how much worse I've become in 10 month's :( I'm totally aware im in a constant nose dive ,I wouldn't want to be a dr trying to save me...I know all my docs are doing everything they can but to avail, I see there frustration but out of concern of course. Now that my liver, gallbladder and pancreas have become involved my diseases have evolved to another level , the level of "im screwed"! Has anyone else out there gotten so sick so quickly like me?? I've wrote a little before about having childhood illness and always had fatigue and low grade fevers all throughout adulthood but never thought anything of it... im a go getter so I was always busy with my career, daughter and out with friends when jade was with her dad so of course I was exhausted right lol..everything changed in April 2012 when my lungs flared up the first time and it's been down hill since!! Im always hopefull to slowdown my diseases process but all I can do now is take everything one day at a time ..
One day at a time is a great way to take things. My doctor took me off work in July and it seems like every thing has went down hill since then. I always managed to bounce back so i had high hopes of things being better without the stress of working. It has been a hard reality for me and i am just now gettiing used to it. I will be right their with you on taking every thing one day at a time. It does help to have people like you to to post back and forth with.
I love how we all inspire each other!! Just gotta make the best of what you have... im going to spend time with my good girlfriend and her fiance dying of ALS next week. He cant walk, talk or take care of himself anymore, its so sad. He's only 42 , very handsome and a great person .. He's is my hero !! he keeps my spirit strong and life in perspective :)
Luckily mine hasn’t but I have a friend who was diagnosed the same time I was and well she is in the same boat as you they are trying she has so much fluid she is now in congestive heart failure and well she is igg and igM deficient and they won’t treat her until she has her part which is crazy to me and she currently has mono and RA is crazy but they can’t give her anything bc of the other issues she is 30 I pray someone can help her everyday bc
I know that could possibly be me
Look up. What do you see?
I too had problems with my gallbladder. They became infected and was getting redy to erupt. Doctor took them out with my apendex. I also had scare tissue there. At first they though it was from my son. I had not been dignoced with lupus. This was 2 years ago. The day I came out of surgery my work sent me a pink slip telling me because I had missed so much work. They no longer needed me. Walmart for you.
Last foward to last may. I went to the doctor I had an ear infection. I used to get then alot. So my family doctor prescribes bacotm a suffa based meds. Even though im allergic. I go see my dad in va. He smokes. The 2 together put me into a flair. Enough so the er thought I had a blood clot going to my lungs I was 38. Lots of tests a heart test stress test and everything came back better than good. Thats when I was dignoced with lupus. I say this because you should Never Never give up. There is well not that you will know anyway. if live after death. Its final. You can not get up the next morning and say man I feel better today. You should alwayd fight for what you want. Life is a gift. And you should fight for what you have. What someone loved you enough to change there body for. To go without. All for you to have food clothing. And a chance to live. Dont let this things win. Because if you stop fighting and stop caring that is what you are doing. Your letting lupus win and noone should give in to this stupid disease
Yes my sister only got better when a doctor at ohsu with a brain tried something different. He put her on a natural substance that helps stabilize a persons immune system called A.m.p floracel. Before that we as a family didn’t believe she would make it another year. Anyways if she takes the floracel she’s fine. Although if she stops her symptoms do return so, it not a cure just a very effective treatment in her case. If you want more info let me know. Have a great day! Jeff
Hi
You girls are so positive, Love you all. I am fortunate, not real sick, at least not yet. Thankful for every good day I have.
Stay positive.
Cindy
Faster and faster… Still not at right drug “cocktail.” Praying for relief. I will add you to my prayer.
I feel as if I have just met my twin. Honestly. I could, w/ the exception of knowing as much as I could, or being as well treated and helped as you are, have repeated the same. I knew I was "healthy," just low grade fevers. VERY TIRED (but esp. if no one was "looking") Apparently my Husband's Father (we were married 36 yrs ago) took him aside to say "Please marry Liz, we love her." I always joke his Mother proposed 1st, but don't want to think about that now, did he marry me to please them? he says no, I believe him. But anyway, his father continued, and he was a Brilliant man, we're talking Harvard, poor, there by smarts alone, age 16-19, then ph.d. M.I.T. ages 19-21 in optics!! "Liz is awfully tired, naps whenever she can." I was 21 when we married. "She may be sick." Everyone has 20/20 hindsight, but maybe I was blessed by a Mother and Father who never told me I was sick. Missed half of Kindergarten, was afraid to tell teachers I was sick, might have to go home. Was not a good thing. So, Jesse and I married, the dx's began. Lupus was in 1992 when I could not stand the pain and fatigue anymore, but have found out much to my surprise I never even told my best friend! certainly not my Children. But one will not speak to us, age 30, many medical helping degrees, but "I am too sick, a hypochondriacal person," and her Father undependable because surprise, he got early onset Parkinson's Disease. I say, no regrets, "Be careful what you pray for." I knew my Jesse would not be able to bear being sick. Guess who, genetically completely diftt. from me just got a Lupus titer positive, just 1:180, but smooth dsDNA only. I keep telling him it will go speckled as mine did: lots of possibilities, or just nothing. I have in that area, RA w/ pos. CCP, and Sjogrens Type I, kidney never tested, but definite proteinuria treated, I just have not let them do a biopsy, Stupid. My Liver acts up. My Pancreas, I think I have not hit yet. Or Lupus I should say. I try to do everything healthy, medically or Complementary w/ medical approval. Will take anything natural but safe over my too many drugs. I was just told (my Husband and I are in shock) that I have serious Autoimmune (related to limited? regular but not bad? Scleroderma, SLE? Sjogren's?) Pulmonary Fibrosis, that we knew this all along? By my local Rheumatologist, and that I have "Sjogren's Autonomic Neuropathy." Apparently we knew that too? Good grief! I will claim a lot, but not total amnesia. I listen when I am told I have a definite dx. As I just watched my Husband fall apart watching his Mother die of an inexplainable COPD, she nor I have smoked, anything. But my lungs are fibrotic, my lungs have been bad since my 20's, just diff't dx's. I was told at brigham women's "Please see a univ. Rheumatologist after I had a 12 cm. tumor removed, r/o sarcoma, have had so many lymph nodes removed, and Lymphoma dx'd more times than I can remember w/o a biopsy. My big "cancer scares have been total hysterectomy, age 33, endometrial pre cancer, and thymoma (Yup. I also have myasthenia gravis, but very under control w/ meds, and after thymoma removal and plasmapheresis. So, I m difft. But just left hospital w/ broken sternum, they told me impossible until they thought longer. We were out of state w/ my Husband's Mother until she died; I put off taking care of myself until then. I was certain when we returned to FL my MDs would care. Nope: it's someone else's problem. So the lungs, my neurological? rheumatological? incontinence of urine and bowel, and inability to walk, left side doesn't work. (Oh, my liver just gets unhappy, but no hepatitises, so maybe SLE? or Autoimmune Hepatitis? I just don't know. I do know I still have dreams, but I cannot even stay awake, need oxygen, pulseoximeter in 80's at night. Need good MDs. I am guessing you have them, so as awful as this is for you, I congratulate you for seeking, I suppose, the best treatment. It's hard when only my Husband in my Family knows I am ill, and my Mother has successfully convinced my daughters that there is nothing wrong w/ me. I send you Love, good wishes, prayers, everything. You are so upbeat. That helps me today. You did something great. Love Always, Lizzie burtiebee
It always breaks my heart when I read about not having support from family or friends, it's just sad.. everyone on here is so important to maintaining healthy ,balanced mental and emotional stability! We are all each others cheerleaders and that priceless:)
What is really hard on us is that the one daughter sets up impossible rules my husband says implausible rules no discussion. I feel that honesty is the best policy. What do you do to create family harmony? We have lost so many. In any case, thanks again for inspiration. Love, Lizzie Burtiebee
Major thanks: if only in our case, as it has been made clear that my husband and I are not to discuss our own health even in minimal terms. I have been told love and kindness are my “specialties,” and we only know to continue being ourselves, w/o sometimes even the ability to say (Allowed term) “we are so sorry we have a mtg. at that time.” Read “md appt.” instead of mtg. I would never expect anyone to understand what happens, but I really learn from most issues here, we are not alone. Great positive attitude is what I told my Husband upon his later in life dx. has helped me, along w. Spiritual life. Yoga is great. Yoga in bed or on chair is good. Looking forward to my broken sternum to heal to return to “normal attempts” at exercise. Endorphins even in tiny amounts really help ! Thank you and the best of health to All! Love Always Lizzie burtiebee
jeep2007 said:
Yes my sister only got better when a doctor at ohsu with a brain tried something different. He put her on a natural substance that helps stabilize a persons immune system called A.m.p floracel. Before that we as a family didn't believe she would make it another year. Anyways if she takes the floracel she's fine. Although if she stops her symptoms do return so, it not a cure just a very effective treatment in her case. If you want more info let me know. Have a great day! Jeff
Very interested in the Amp floracel. Any information would be greatly appreciated. Do you get it locally or online? Thanks for sharing God bless
Julie
My disease was very aggressive and before I saw my rheumatologist felt like I wouldn’t make it one more day but thanks to my faith in god and the loving support of my DH and family am getting thru it 
like my DH says we will take it a day at a time as well as symptoms as they come. He has been my rock but without my faith I don’t think I would have the ability to stay so positive. Have a great friend that also infuses me with positiveness and gives me the best advice very grateful for her as well and now this support group you guys are amazing and am learning so much I wouldn’t be able to do that on my own so thank you guys as well.