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Posts (16)

Sep 17, 2018 · Mixed connective tissue disease in Autoimmune Diseases

I have been thinking of seeing a therapist… just to help me deal with it all.

Sep 17, 2018 · Mixed connective tissue disease in Autoimmune Diseases

Hi everyone. I have been having a very bad day..few days ago I almost felt like I was better I was able to do things. No it like my mind is telling me body to do things and my body is not responding..I have had no appetite whole day and the thought of eating make me feel nauseous. I wish I had someone living with me who would understand this mixed connective tissue disease and just cook for me. Because when I do manage to make food I’m so tired and I can even swallow it because it hurt sooo much that I can’t even explain the feeling. It’s like my throat just become to narrow or something and nothing goes in.. when I do manage to forse eating and flush it down with water with each bit.. well then few minutes later I gag it all out and I’m all empty again. What I don’t understand is how did I get from 68kg to 81kg sooo fast with all the vomiting and being sick. I cry of pain as the pain pills don’t help. My appointment for rheumatologist is only 14 November and till then I have to raise my kids feed them and my brothers wedding on 6 October where I have to travel for it. How will I fit in my clothes if I keep gaining and how will I feel and look with all the vomiting and pain and being so fatigued. I eat very healthy and no junk food. I also feel like I’m having some emotional break down. I have no support. My parents.. well I’m not even sure I can call them parents as my whole life they were mostly absent. They don’t even bother to find out how I’m doing. Instead they still try to take more from me.. my husband shame tries to help but he don’t know anything about this. And he is working all the time so we can have enough money for my doctors and meds. My kids are just to small for me to expect them to understand what is happening to their mommy. I have no friends or well I had one but when I was knocked down in bed full for few days and couldn’t make it to her kids birthday party and called her to tell her that I was diagnosed with mixed connective tissue disease so I’m to sick. Then she stopped talking to me.. wow what a friend. I really hope to make a friend here who is going thru the same as me. Because even thou I can’t help myself or others much I’m a good listener and I try to give my best advice.

Sep 12, 2018 · Mixed connective tissue disease in Autoimmune Diseases

I also wish there was meeting in person groups. It would actually help much more. But for now we are here for you. I used to have sleeping problems too and the prednisone dose make it worse. Try to drink it early morning and not at night. And if you have to take at night then try nature meditation music to relax your mind and body. It seems to help as I was having vivid dreams when I did sleep. And it helps a bit. I did loose weight before the prednisone because of all the vomiting. Now I keep gaining since they gave me prednisone and I don’t even eat unhealthy so I don’t know why I’m gaining I mean I gained 10 kg in a month and before my weight was healthy at 68kg. And I’m mostly swollen up or my body is holding water back. This morning my kids woke me up at 8am and I’m so tired..after a having a bowl movement my whole body is shaking like I’m in shock and I’m nauseous. I have the same problem under my feet as you. And I get constant flare ups that becomes more painful everyday I do get that depression sometimes. But it’s good to not let the depression get hold of you in a bad way. Try staying positive do things you like to do that wouldn’t make you feel worse. You not alone. And my prayers with lots of love are with you and your sister.

Sep 12, 2018 · Mixed connective tissue disease in Autoimmune Diseases

Thank you I’m looking forward to a friendship. I’m sorry for your Brother I’m sure he will come around still. I also have family that just don’t give a flying hoot they to busy thinking about themselves and draining me more. My in laws well now that’s my real family the only bad side to it is they are in India and I’m in South Africa. We have decided that if the doctors can’t help me here I will move with the kids their for a while. I don’t know how you manage work still? I think people don’t believe us because we don’t act as sick as we feel, but we have to look the way we feel..people would run from us. Hope you have better days.

Sep 5, 2018 · MCTD (Mixed Connective Tissue Disease) in Autoimmune Diseases

What would be a good diet for this and exercise?

Sep 5, 2018 · MCTD (Mixed Connective Tissue Disease) in Autoimmune Diseases

Thank you for advice. Are you on treatment for it.

Sep 4, 2018 · Mixed connective tissue disease in Autoimmune Diseases

Please would you send your full message to me then in private message where no one can cut it I would still like to know what was cut out

Sep 4, 2018 · Mixed connective tissue disease in Autoimmune Diseases

Do you mind sending your personal issues about my friend’s message private. I liked her honesty and opinion. What I don’t need is this discussion inbetween my responses from others. And I do feel on a more personal note. That Oregongirl also deserves two be spoken too in private conversation as too why het opinions was edited. Please have some respect for the elderly