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Mixed connective tissue disease - Looking for support
Hi everyone.. I’m new to this. So I have no idea how it works. My name is Liyana and I’m 29 year old woman who went from the never sit still lady to the can’t get out of bed Lady....two months ago I was tested and we discovered that me being sick all the time and out of shape is because I have mixed connective tissue disease. I have never felt so scared in my life. We have two little boys one is 4 and the oldest is 6. I can’t even enjoy play time with them because I just don’t have the energy to do anything lately. I haven’t started treatment yet. And I so scared to start it. In February I had a unexplained miscarriage and few weeks ago I had another. But now I know why. It’s so difficult for me because while others are having new babies I’m loosing them. I really would love to have a daughter still but being so sick all the time I doubt it will happen. I don’t have friends anymore because I’m no fun. So ya. A online doctor suggested that I go on Mayo Clinic and speak to others who has the same or similar condition because it will help me deal with it and understand it better. So I’m trying it now because I feel like no one around me understands what I’m feeling. I hope I can make some friends here.
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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.
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3 ReactionsOh @liyana! I'm so sorry to hear about all that you're going through. Managing a condition like MCTD is a tough journey, but I want you to know that you don’t have to do it alone. It’s horrible to feel frightened and alone. But I sure like your attitude of trying to figure things out and also listen to others. Often, that is all one needs – to be heard and to be acknowledged – to feel better.
While you wait to see your doctor on Nov. 14th, would you consider seeing a counselor or a therapist? I'm glad you're part of this group; please know that you're in a good place to get the support you need.
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3 ReactionsI have been thinking of seeing a therapist... just to help me deal with it all.
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3 Reactions@liyana I'm sorry to hear you are in so much pain. It sounds like stress might be making it worse. I know when my PMR has flared up in the past and I would over do it some days or if I was under a lot of stress, the pain would seem a lot worse. Kanaaz's @kanaazpereira has a good suggestion about seeing a therapist. I think they may be able to provide techniques to help lessen the stress and help you.
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3 ReactionsI also have been diagnosed with this and it’s been a heart ache. It affects so much. I hate when they bring it up in the news or in my doctors office
All they say is dry mouth and eyes. It is so
Much more. I have lupus fibro and a blood disease/ disorder that causes me to clot. I have lived through numerous DVY’s and 4 pulmonary embolisms, even surgeries to remove them 6 blood transfusions. Instances in ICU and I also have factor V Leiden that is genetic. I have raynoids, neuropathy, migraine, vasculitis, and postural orthostatic tachycardia syndrome.
The mixed connective tissue is the worst. Within a year my skin is hanging off of me and my teeth are all cracking. My ears ring constantly, I’m weak so weak I can hardly walk across the room. I do push myself. I stretch when I can and I do 50 squats a day to try to keep
My leg muscles strong but the MCTD is destroying my muscle tone everywhere. I have aged about 7 years this year. I also
Lost 37 pounds because my hunger is gone and I cannot have. Bowel
Movement when I do eat. I am so dry globally. I have tried everything. I’m taking fish oil a ton of multivitamins. I drink coconut oil because I heard it lubricated the digestive tract.
My hair has turned into cotton candy and has also turned white. It will not grow it breaks off after a certain point. It’s also thinned about 40% I am using restasis eye drops they are helping along. I no longer get the puffy wrinkly eyes that are red and swollen. I am getting iv fluids 3 times a week. I begged my doctor for a picc line. It took months to get one but I was able to and that’s helping a lot.
My name is Jennifer
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1 ReactionHello Jennifer @jennifer2010, Welcome to Connect. Thank you for sharing your post. I'm sure it must be difficult to deal with so many health problems. I had to look it up to find out what you were talking about but I'm glad to hear the Peripherally Inserted Central Catheter (PICC) is helping a lot with all the IV fluids you are getting. It seems like a no brainer for people that have to have a lot of IVs to get a PICC line. I'm glad the doctor helped you get one.
@jennifer2010 have you found any other treatments that have helped you?
John
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1 ReactionThanks John.
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