When to see the rheumy that my immunologist sent me to. Referred because of lupus only to be told that i have, what I already knew, sjogrens and mixed connetive diease. he took more blood work to check c proteins, sed rate, some other test i am not familiar with. He did not seem concerned however did want to follow up with me in a couple of months unless the results were abnormal. It is frustrating not knowning what your true diagnosis is. People look at you and say you look good however your body is telling you something. I miss waking up and feeling refreshed and not like a truck it sitting on you. I use to be able to do so much and now i have to think ahead as to what i will attempt to do in a day without running out of steam. My family trys to support me however they truly don't get it. Thanks for hearing me vent. Have a great day. I am normally a positive person just a frustrating day.
MCTD is a disease and be very closely related to lupus- for some the diagnosis rotates between the 2 depending on disease activity At least you have a dx- many of us suffer for years before getting a name for our ailments.
I hear you. In addition to lupus, I also have Sjögren’s, connective tissue disorder, you name it. I’m a mess. I, too, miss the days when I could accomplish so much. Now I’m exhausted most of the time and in pain. My husband and close friends try to understand, but I don’t think they truly get it either. I think they believe I can will myself to do things when, in fact, despite my best efforts, I often can’t do many things. I understand where you’re coming from. Hang in there.
Thanks Kim. It is a blessing to know someone understands n we are not alone.
It is so hard to deal with this and then to have people act like you can just get over how you feel if you set your mind to it. Keep those good friends by finding compromises with them. I asked them if I could call them spur of the moment to see if their schedule would allow a lunch or short shopping trip, etc. That effort of mine really told them that I valued them so much. Sometimes it works and sometimes it doesn't that we can do something. I do my part by initiating as much as I can. An impromptu dinner out as couples or singly etc. Sometimes I know that a quiet lunch will push me and that is good too because they see that I have pushed to enjoy their company and that means that I value them. To me it is worth it for me to do that. Make your family and friends aware that doctors like you just saw demean and depress you. Keep fighting and know this group is or has gone thru the same thing.
I understand how you must feel. I was diagnosed over a year ago with lupus, but my rheumy was more interested in giving me vitamin/mineral infusions instead of running labs to make sure what was actually going on first or if anything had changed. So, last month I went to a recommended rheumy for his opinion. I will find out Tuesday what he found. I am terrified he will tell me that it's all in my head. Can he actually find anything if I have been on meds for so long? I think having a diagnosis for which he feels confident will make me feel better regardless if it's lupus or fibro, etc. But, being told I don't have lupus and he doesn't know what it is will be a hard blow to my brain.
I'll hang in there with you. ; )
Thanks for all the support, I am greatly appreciative. I will find out next week what my results are from the nurse. These crazy dieases play with your mind. I am grateful for the lab results I have gotten so far cause at least it validates what is going on with my body. I do feel for those who have the symptoms and do not have a diagnosis. My family and friends too thinks I can just push thru, I use to be able to make my mind up and push thru, however I am humbled to know that if i do i will pay a heavy price. Again thanks for the support.