I am new here
Hi, I have Sjogrens,Raynauds,Lupus,Fibromyalgia, and Hashimoto. I had my thyroid removed due to that. I have a lung disease caused by auto immune. Also I have very weak muscles thought to be caused from steroid myopathy.
I have had these things for four years and have declined I have problems bathing....do not do any house work or cooking...I can't stand that long. I use a scooter when I go out. I rarely go anywhere...have not been out in six weeks. It seems when I go to town I get pneumonia and land in the hospital...once for 23 days and I gained `100 lbs on steroids.
I am now having very loose stools every time I eat. I throw up often. I have very bad burning and stomach pain in my stomach right under my ribs. I am on Nexium and watch my diet.
I go to Rheumatologist next week He seems useless, but is one of four in my town and they are in the same group.
I can't take the med for Sjogrens as it really bothered my stomach. I reduced my Plaquenil due to stomach problems.
I don't have faith in my doctor but would have to travel five hours to see another one.
I have asked him about plasmapheresis but he says it is very expensive and he does not think I need it..
I am so frustrated..Four years have gone by with no improvement. I feel my spirit and body are not one....my spirit wants to do things, go places etc....but my body will not let me..does this make sense?
I just came for support and to learn.
I pray for a cure for this disease.
Thank you for having me.
Hello and welcome to our family. I am glad that you are here with us because this is the place to be if you need support, understanding, help, or just to vent. I understand completely what you meant by that you spirit is willing, but your body is not. I think that it is safe to say that there are many of us who feel exactly the same way. Some of us have had to give up our jobs due to our diseases, some of us have lost friends due to our diseases, some of us are confined to our homes due to our diseases. So, you are definitely amongst people who understand and who care.
I wish that you, at least, had a doctor who you could trust and whose primary interest was in helping you to feel better. Not having that only adds additional stress to our disease and stress is our worst enemy and we must do all that we can to eliminate undue stress. In lieu of having a caring doctor, I generally suggest that you (the patient) lean as much as you can about your various diseases, what their symptoms are, what their treatments are, what medications are used to treat the symptoms, what causes them to flare up & how you can avoid flares, how they affect you personally, and what you can do to help minimize your symptoms. Once you've become knowledgeable about these things, that you can be in a position to TELL your doctor what you want him to do and how you want to be treated for your symptoms. You can then demand that he listen to you, take you seriously and that he not dismiss you or your symptoms and that he treat you and your symptoms appropriately!
We are here to help you accomplish this, we are here to provide you with information, answers, research, and to give you trustworthy and honest answers when we can. We are especially here to let you know that you are not alone and that we want to help you as much as we can. We are here to provide you with support! Again...welcome to our family.
Peace and Blessings