Mitochondrial Diseases Support Group
Mitochondrial diseases comprise those disorders that affect the function of the mitochondria and/or are due to mitochondrial DNA. The effects of mitochondrial disease can be quite varied. Since the distribution of defective DNA may vary from organ to organ within the body, the mutation that in one person may cause liver disease might in another person cause a brain...
I have been a member for sometime but I don't post anything. I sit back and enjoy reading and sometimes offering help to others if I think I can. Not sure if what I am going through merits discussion, here it goes anyway.
I recently had my first sleep study and am happy it is over. I got myself all worked up over it and it was really nothing. Because our disease and some of our symptoms are not very common and in the past I have had difficulty with medical professionals taking me seriously, I had it in my head that the people at the sleep center would not understand me, my condition and my sometimes embarrassing things I have to do in order to actually go to sleep. But, as usual I make a big deal out of nothing and the study went fine and everyone was nice, "we have seen it all," said the guy at the center, which made me feel so much more at ease.
Awaiting the results, I am afraid of the future and that my symptoms will continue and threaten my career and future. I have worked hard and don't want my recent crash and current "lack of energy" to be the reason I have to give up on what I love. I understand yes, it is a new chapter in my life and its not really "giving up" on anything, but I feel anxious because I was not prepared for this and I need some reassurance that I will be prepared for future difficulties. There is however, no way we can prepare and be ready for everything.
I am trying to be proactive and making changes in my exercise and nutritional habits and this makes me feel good as it gives me some control over my disease and my symptoms. I have a big fear of being called lazy. I see it happen to people and even to myself. When I first became symptomatic and was at my worst and unable to work full time, my doctor was like, "well then what do you do all day." I think this kind of treatment has built up and made me self loathing and depressed if I cannot live up to the standards I once put on myself. Does anyone else have difficulty with this or being treated poorly by professionals or perhaps other family?
I can see that my post for a discussion does not have or make a point, but rather is a collection of things I am going through. Some might tell me to "put it in a journal entry," but I hope you can understand I wanted people in the group to read it and hopefully respond to one or a few things I mentioned. Thanks for taking the time to read this.
I recently had my first sleep study and am happy it is over. I got myself all worked up over it and it was really nothing. Because our disease and some of our symptoms are not very common and in the past I have had difficulty with medical professionals taking me seriously, I had it in my head that the people at the sleep center would not understand me, my condition and my sometimes embarrassing things I have to do in order to actually go to sleep. But, as usual I make a big deal out of nothing and the study went fine and everyone was nice, "we have seen it all," said the guy at the center, which made me feel so much more at ease.
Awaiting the results, I am afraid of the future and that my symptoms will continue and threaten my career and future. I have worked hard and don't want my recent crash and current "lack of energy" to be the reason I have to give up on what I love. I understand yes, it is a new chapter in my life and its not really "giving up" on anything, but I feel anxious because I was not prepared for this and I need some reassurance that I will be prepared for future difficulties. There is however, no way we can prepare and be ready for everything.
I am trying to be proactive and making changes in my exercise and nutritional habits and this makes me feel good as it gives me some control over my disease and my symptoms. I have a big fear of being called lazy. I see it happen to people and even to myself. When I first became symptomatic and was at my worst and unable to work full time, my doctor was like, "well then what do you do all day." I think this kind of treatment has built up and made me self loathing and depressed if I cannot live up to the standards I once put on myself. Does anyone else have difficulty with this or being treated poorly by professionals or perhaps other family?
I can see that my post for a discussion does not have or make a point, but rather is a collection of things I am going through. Some might tell me to "put it in a journal entry," but I hope you can understand I wanted people in the group to read it and hopefully respond to one or a few things I mentioned. Thanks for taking the time to read this.
-
My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
I think you have to take care of yourself as best you can, and ignore the responses that others have to your illness. Imagine how hard it is for them to understand. (I'm 10 years into this and it is still hard for me to accept). Take care of yourself
I am having to consider an "early retirement" from my job due to my health. I'm 30 with a MBA and a great job. I'm just not dependable enough to be effective at it any more. So, now my friends and family think that I'm just trying to get out of work and make my husband wait on me hand and foot.
I have not been diagnosed with Mito yet, but all indicators point towards it and I have been doing the cocktail (but in the form of many, many pills) and have seen improvement. I feel for you all. And hearing other people's experiences makes me feel not so alone and crazy. I'm so tired of doctors and people making me feel like I must be loosing my mind because they can't find anything wrong but I have no energy to do all the things I want to do, plus a host of other problems.
Sorry just rambling now. It's just so good to know I'm not alone. Thank you for your post endear444. Stay strong! I believe you!
Amy
What has happened to my motivation and drive. I feel the drive, then go to do the task and have to sit down. I feel (and I know you all can relate) like I am 80 years old, or how I would imagine it to feel.
I could sit in a chair all day and just stare off into space. I feel so worthless, I don't know what my purpose is anymore. I have raised 13 children, well the last one is 10, so twelve. I am not a lightweight.
But I cannot even go grocery shopping any more. I went to a new Neuro last week and had another EMG and now sending me for another SFEMG.
I really don't know what to think. I think alot of this stems from the tests that they have. I think they are alot more limited than they admit.
The insurance companies need proof and so they need these tests to be positive, but if the tests are only so accurate, then what. I wish they would believe us more.
I feel that my job is to prove that there is something really wrong with how my body is functioning, and I feel that they think their job is to disprove it.
At this point they have us sort of pitted against each other. We need to find doctors who want to be a part of a team. I have not been fortunate enough to have that yet.
I also have a hard time helping my family understand. It is strange that the people that know us the best can sometimes be the last to understand.
Maybe denial. Sorry to be so long. I am sorry for all that you are going through. I hope you have answers soon, as I hope I do too. love carla
You have to keep getting back up and working towards getting those better days again. I get knocked down and have to get back up. Other people can't understand the chronic, unrelenting pain that becomes traumatic to your well being.
I have the same sleep issues as you. I am on disability now, so getting up for work and staying awake during work and feeling like a productive employee, are no longer issues. I take a lot of supplements, which seem to help. I have some great specialists now. Mornings are often the worst, and I try to make myself go outside and take the dogs for a walk. Being even mildly active outside seems to help, Even if it means passing out for an hour when I get back. I am so grateful for the good days.
I am sorry you are having such a difficult time. Know that you are in my thoughts and those of others who have walked in your shoes.
I have previously related my symptoms to the thyroid particularly low-functioning, even though I am more often considered to be in the too high group.
I do identify with the low energy, as well as trouble staying asleep even though I usually fall asleep readily. I had a sleep study done in which I was found to be normal. I was told I would probably sleep better if I lost weight. But if I lose weight it will be blamed on being hyperthyroid. I still try, however.
I am currently seeing the 4th endocrinologist since being diagnosed with Graves' Disease in 2009. So far, I have not had a very good experience in dealing with them and my family and friends don't want to have their thyroids tested because of my experience.