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Mar 4, 2013 · Cindi, My name is Diane. I was diagnosed in 2000@Mayo. I have in Just Want to Talk

Diane~

Sorry it has taken so long to get back to you. I am not sure on any times for this forum. I am all new to this. Let me know of any suggestions that may help me learn the ropes on here!

I am so sorry for everything that you have had to go through. It sounds like your life has really been through much of what I have lived. While we are going through these terrible things, we think we can never survive or wonder how we will make it. But we do and we will and we ARE stronger. You are proof. Good for you!

Did you see the latest reply from Lynnie? Sounds like she needs a friend.

Take care of yourself and please keep in touch.

~Cindi

Mar 4, 2013 · MCTD in Digestive Health

I am sorry to hear of your dx Lynnie. It is a tough illness and what makes it even more difficult is that family and friends do NOT understand. Heck! They do not understand the lupus alone or the scleroderma but MCTD?! Not a clue.

The B12 should start helping the fatigue but the fatigue will never go away. When you really know that the B12 is working is when it is getting close to when you need to go in for your next injection or if you are late getting it. Then you realize how much you need it and that it is helping some.

I have had this illness for several years and have major ups and downs. I have never went into full remission though. It seems that one of the diseases may be calm for awhile but while it is not kicking my butt, another one of the diseases is in a major flare. You just have to work with your doctor and through trial and error, you find the best treatment for you. This may only work temporary and then you are back to the drawing board but the important thing is not to give up. I know there will be days when you feel like it but you have to draw on your inner strength (I turn to God and use HIM for my strength) and push on.

What I hate is all the crap that accompanies the different illnesses. Like the GI problems from the scleroderma. And especially the fatigue and just not feeling well. I also am thankful for this website because people do not understand and there are many times you just need to vent or have support.

Thank you for responding. You can “chat” with me any time.

I am thinking of you and will say a prayer.

~Cindi

Feb 25, 2013 · MCTD in Digestive Health

Thank you Jessica for your response. I so appreciate it.

I too suffer from malnutrition and the doctors say the feeding tube is inevitable. I am believing that I will never have to have it, but as I am writing this I am in a “cycle” as I call it when I am unable to eat and throw things up because of the esophageal motility issues. Sometimes the cycles last months, at times only weeks.

A bad flu is a great way to describe the general feeling of fatigue and just not feeling well. The pain can be extreme but depends on the day and activity.

Sorry to hear that you are going through so much at your young age. I will pray for you.

~Cindi

Feb 20, 2013 · Cindi, My name is Diane. I was diagnosed in 2000@Mayo. I have in Just Want to Talk

Diane~ Great to hear from you. Thanks for your response.

I totally understand about the lifeline concept. While I am a very strong Christian and have faith in God to see me through everything, I am thankful that He has provided my life jackets so to say. Yours is your horse, parents, house, etc. Mine are my grandchildren. As well as my husband and three grown children;

It does get old at times (the pain, fatigue and frustration) but I take not only one day at a time but sometimes 1 minute! It seems like every time I go to the doctor, they are diagnosing more problems. I have 4 cancer issues going on right now (where they are watching and concerned I may have or develop cancer in 4 different regions) and am facing 1 major surgery and 1 not so minor. And of course, like you well know, even a minor surgery becomes a huge issue with our health problems.

I will be thinking of you and saying a prayer. I love the way you view life. What else can we do? I will NOT give up and I will NOT succumb to self pity. However, I will admit that I have my moments, my days. The key is not staying there!

Thanks for writing.

~Cindi

Feb 9, 2013 · MCTD in Digestive Health

Thanks for the response Trouse.

I have had my conditions for several years. It is actually multiple autoimmune diseases that overlap. As for the fibromyalgia, they had dx me with that years ago and then lab work kept coming back for other health conditions.

My daughter, though has fibro. She struggles quite a bit with it but does not let it keep her down.

Good luck with your journey with fibro. I will be praying for you.

~Cindi

Feb 5, 2013 · MCTD in Digestive Health

Would someone else please join this discussion and let me know how you cope with Multiple Connective Tissue Disease? How can you explain it to your family and friends when they just do not understand? How can I explain it to my doctors? Myself?

I am always tired. Extremely tired. Weak. Do not feel well…..ever. Then at various times, I have problems or flares with several different issues. I always seem to struggle with the neuropathy in my feet and or the raynauds or just swelling and pain. The GI problems are endless. Though they have talked about someday I may have to have a feeding tube, I have always fought that. But with this dismotility and Barretts, some days I actually think just do it and get it over with. I am tired of the pain and wondering what to eat, what I CAN eat.

My skin hurts. My joints hurt. And I feel like I am losing my mind some days. I hate when I feel all whiny and negative. That is not me but darn it all, I hate these illnesses.

The doctors all say to join a support group. Where and which one? Lupus? Scleroderma? Raynauds? Sjogrens? I am at a loss so turned to this site.

Any advice would be helpful. Or just knowing there is someone else out there going through the same thing and understands!

Jan 31, 2013 · Body by Vi in Digestive Health

With so many family, friends and acquaintances trying to sign me up for the Body by Vi program, I am interested in hearing what your experiences, opinions, research and advice from medical professionals are.

I personally do not agree with this program and am concerned how it could affect me with my multiple health concerns.

Please join this discussion.

Thank you.

Dec 28, 2012 · Connective Tissue Overlap Disease in Digestive Health

Does anyone else on this site suffer from Connective Tissue Overlap? This illness is so frustrating and it would be helpful to know of others that have this and what they do for the many different problems.

I am having some real issues lately but the one that is irritating me the most at this time is my tongue. It has bled for some years now due to the CREST (scleroderma) but now it really affects me when I eat. My tongue always looks like it has been scalded (it is a bright red) and it feels that way also. Now when I eat or drink, I have difficulty because of the pain. And it does not matter what I consume. Bananas send me into orbit because of the pain. Any suggestions?