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All Blog Posts (40)

I think we are on illness overload here!

I guess I am used to having illness and pain, it has become my normal. What has thrown us for a loop lately is my husbands illness which came on suddenly and has us all worried. In August he got real sick with a fever, chills, night sweats, head pain and leg cramps. After a stay in the hospital and the discovery of a high sed rate and positive crp he was referred to a surgeon. the surgeon biopsied his temporal artery and although it came back negative the rheumy specialist diagnosed him with tem… Continue

Added by Yvette on November 19, 2009 at 1:36pm — 1 Comment

Have a good weekend everyone and God Bless!!!!

Have a good weekend everyone and God Bless!!!! Continue

Added by spunkie on November 6, 2009 at 5:08am — No Comments

Rheumy Appt in Boston Tomorrow

Tomorrow I see Dr. Todd at Brigham and Womens Hospital in Boston, Ma. I used to get all excited before I went to see a specialist because I had such anticipation for a diagnosis at long last and maybe a medicine to improve my quality of life. In all of the past sixteen years that this disease as eluded detection from any laboratory test I still held out hope that someone would "hear" me . Instead, I would sit there invisible, shivering in a jhonny with purple feet while a doctor read notes and l… Continue

Added by Yvette on November 2, 2009 at 8:08pm — 2 Comments

My Heart Feels Broken But It's just My Chest That Hurts!

People commonly refer to broken hearts when they lose a love and endure a break up. My heart hurts but not for emotional reasons it is purely physical. Pericarditis calls on me now and again usually it starts with one ice pick jab that stops me in my tracks. I never know when it will hit and it layed low for a very long time. At least I don't run off to the E.R. anymore. Even when my heart gets tachy and hits 160 BPM I hold my ground. Probably not the most intelligent thing to do but I kind of h… Continue

Added by Yvette on October 24, 2009 at 10:35am — No Comments

PhysiciansforPatients - Lupus (Cool site by doctors for Lupus patients!)

This Blog will be a Drive-Thru Lupus message! Hope you're all doing well. Here's a fairly new community run by docs for patients with Lupus. Keep fighting the good fight, everyone. Wishing you well, Kim

… Continue

Added by 3sisters on October 19, 2009 at 4:43pm — 2 Comments

blue is not just a color

Blue Skies Smiling At Me. How can a blue sky smile at a person who is singing the blues? Nobody knows the trouble we've seen, nobody knows our sorrow. It's true that only another person with a connective tissue disease can understand what it feels like to live in this skin. I get up every morning in the same way each day. I keep my slippers on the nightstand and before I can get out of bed I put them on while I am flat on my back with my feet in the air. Then I roll to my side and ease my feet… Continue

Added by Yvette on October 19, 2009 at 2:50pm — 2 Comments

wonderwoman used to live here

I remember this woman that used to be the mother of my children. She would get up every morning at the crack of dawn. Once her feet hit the floor she was in constant motion. It seemed that she had a never ending supply of energy. She sewed p.j's and halloween costumes for her four small children. She even had a daycare in her home so she could raise her own kids and help with the finances. She was the cookie baker and kool aid mom of the neighborhood. Boy, I could tell how much she loved keeping… Continue

Added by Yvette on October 13, 2009 at 7:06pm — 5 Comments

When it rains...

In my 'younger days' (I'm 46, but talk like I'm 90-just bear with me), those ups and downs were exciting because I knew I would bounce back. These days, there's a little less bounce in this gal - physically and emotionally. Aging is only one part of that, though. Living with a condition that is so full of surprises all it's own is a whole 'nother ballgame. I think that the constant guardedness that I feel in monitoring my flares hampers my ability to be more emotionally ready to handle life in g… Continue

Added by Maria on September 22, 2009 at 11:11am — 1 Comment

Tribute to Patrick Swayze

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Added by Kathy on September 15, 2009 at 10:48am — 1 Comment

Raynaud's

Has anyone with MCTD had any severe experiences with Raynaud's? It has been a huge problem for me. My fingers, toes and tongue all turn blue and white. A couple years ago, I had the tip of one finger turn black and then fall off. I went to college near Boston so there are cold winters and I had to walk to class. I take 90mg of procardia and an adult aspirin everyday and use nitroglycerin ointment as needed. This helps but doesn't eliminate the problem. Anyone found something that works really we… Continue

Added by Julianne on August 19, 2009 at 3:38pm — 8 Comments

Banner code

*a href="http://www.LupusMCTD.org"> *img src="http://i202.photobucket.com/albums/aa109/LupusMCTD2/lupusbanner1.png"> Where you the two * replace that with a < bracket and this becomes a clickable redirect code to this site. Great to put on your own websites and blogs Here is what it will look ..

More banners to be added. Just right click and save as for the pic Continue

Added by Kathy on August 6, 2009 at 11:30am — 5 Comments

just wanted to say hi to every one and thank all who welcome me. recently dx with mctd with lupus as…

just wanted to say hi to every one and thank all who welcome me. recently dx with mctd with lupus as the front runner. having a rough time as a go go person i cant seem to make my mind accept that the body will not cooperate. i dont know how to pace myself. many times i am denial til i drop from exhaustion. i am a nurse i love my job but am afraid i wont be able to do much longer. thanks again for all the info just knowing that i am not alone gives me hope. Continue

Added by ileana torres on August 5, 2009 at 3:14pm — 1 Comment

Lupus, vitamin D linked by Oklahoma scientists

Lupus, vitamin D linked by Oklahoma scientists State study could further therapies Published: August 5, 2009 For people genetically predisposed to lupus, a deficiency of vitamin D may be a catalyst for developing the disease, say scientists at the Oklahoma Medical Research Foundation. The research by Dr. Judith James and graduate student Lauren Cole could be useful in treating lupus, which has no cure and strikes up to 2 million Americans. "Vitamin D could be beneficial to lupu… Continue

Added by Kathy on August 5, 2009 at 11:37am — 2 Comments

Doctors eye fresh approaches to cutaneous lupus

Doctors eye fresh approaches to cutaneous lupus Aug 4, 2009 Many different approaches are used to treat the clinical symptoms of cutaneous lupus erythematosus (CLE), both topically and systemically. However, when topical regimens prove insufficient to control a flare in refractory cases, clinicians must additionally implement systemic therapy. Topical therapies, such as calcineurin inhibitors, corticosteroids and stronger sunscreens, can be effective in the treatment of CLE. Depending… Continue

Added by Kathy on August 5, 2009 at 1:11am — No Comments

Lupus Arthritis

Lupus arthritis Best Practice & Research: Clinical Rheumatology, 07/28/09 Patients with systemic lupus erythematosus (SLE) frequently suffer from an inflammatory arthritis, which typically manifests as a polyarticular arthritis, more likely to affect small joints and with less prominent synovitis than is seen in RA. This article addresses the clinical features of arthritis in lupus and an approach to the differential diagnosis. A variety of medications are effective in the treatment… Continue

Added by Kathy on July 28, 2009 at 11:41am — No Comments

Which way is Wonderland, Alice?

"Alice: It was much pleasanter at home, when one wasn't always growing larger and smaller, and being ordered about by mice and rabbits." - from Alice in Wonderland, by Lewis Carroll I'm back from my Germany excursion with my family and have been trying to get my feet firmly planted on the ground. I've been tripping up a lot, though, because I'm noticing some hesitation in going back to what used to represent 'home' before I left. The quote listed above from Alice in Wonderland only fits for me… Continue

Added by Maria on July 27, 2009 at 11:20am — No Comments

old site is now archive files

the old Mother site www.LupusMCTD.com is now cleaned up and files are available to read. No more new members or posting will be accepted over there. I'm trying to keep everything at one location, and I picked Ning for that as it has more to offer you the member. Here at Ning you get your own web page, you may upload videos, pictures, etc that everyone can do. At the Mother site you can not do that. Here is archive reading files web addr… Continue

Added by Kathy on July 26, 2009 at 5:32pm — No Comments

cytoxan

Has anyone taken Cytoxan for MCTD? How did it effect you? Thanks a bunch. Continue

Added by Bevi on July 21, 2009 at 11:29am — No Comments

Mixed Connective Tissue Disease

I have been on the lupus/mctd website for a while researching this disease. Normally I just read the posts. Last year I was finally given an dx to my health problems and that was MCTD. I am 37 and happily married. We are both struggling to understand this disease. I would like to say thank you to the people that put so much into this website. It has given me more information than any other I could find. It helps knowing you are not alone in the struggle with this disease. I take Plaquenil, Ultra… Continue

Added by Bevi on July 19, 2009 at 1:19pm — 17 Comments