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Dealing with a lot? - March 13th 2018, 10:23 PM

Alright, so just to give some back ground, I used to be a very healthy kid. I only ever had a problem with PCOS (Polycystic ovary syndrome) which didn't give me a whole lot of trouble honestly, and I'm lactose intolerant,but since I've gotten older, I feel as if I've been slammed with issues. I've just been formally diagnosed with MAS (multiple autoimmune syndrome). I've got Lupus, Fibromyalgia, and Sarcoidosis. I'm feeling very down. I'm glad I've finally got some answers from some long awaited questions, but still, I feel as though the world is just kinda against me. All of these conditions are manageable, but they don't have a cure. I'm going to back to my doctor in two weeks for results for a few more tests, and to work out a treatment plan.

Has anyone been diagnosed with any of these conditions? If so, how do you manage them? So far I've been doing a lot of yoga and meditation as well as essential oils and additional breathing exercises. Any advice would be great.
   
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Re: Dealing with a lot? - March 14th 2018, 06:35 AM

Hey there,

I have not been diagnosed with any of these but I wanted to reach out and let you know I am here if you ever need someone to talk to. I do know there are people on the site who have fibromyalgia so I hope some of them will end up being able to help you with that. I know there are some ways to cope with it but different things help different people so that might be something you'll have to try and figure out.

I am glad you will be able to meet with your doctor soon to discuss a treatment plan. One thing I suggest is to remember to advocate for yourself. If you ever find a medication or treatment plan not working talk to your doctor. If they don't listen then you might have to learn to fight a little harder to get them to listen or seek a second opinion. While I have never deal with these issues I have had to advocate for other illnesses and it's hard to do at times because you want to know that the doctor knows best. While I know there are some amazing doctors out there and I am not trying to scare you I just wanted to mention it as kind of a reminder. The doctor is being paid by you and so if they don't listen you have the right to speak up about.

I can relate to feeling like the world is against you. I dealt with that for a while after getting certain diagnosis. I think when you find a way to manage things that feeling might fade a bit.

Something that might help is looking into finding a therapist who can help with these feelings. I believe there are therapists out there who help people and work with people who have chronic illnesses. That can be helpful because they might be a bit more understanding and they might be able to help you find ways to cope. I know therapy might not be an option though but I wanted to throw it out there.

Lastly, depending on the size of your town and resources there might be groups where people can go and discuss and get support for their chronic illnesses. I believe my town has one. Some of these groups are free and some are not. That might be helpful because finding people who understand can help, you know?

I hope that you are okay and remember I do mean it when I say you can vent. Since I don't have a lot of experience with these things I might not be able to offer advice but I can try and support you or simply give you a listening.

Best regards.


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Re: Dealing with a lot? - March 14th 2018, 08:04 PM

Thank you for all the support. Thankfully, my doctor is 100% supportive of me choosing the direction of my treatment. If I have a problem with something, she is always quick to help me find a solution, and if I have questions about specific treatments/medications, she gives me her honest opinion, and still supports me even if I go against what she is recommending. I think I'm pretty blessed when it comes to that. I've been seeing the same doctor for ages, so we work pretty well with each other. Also, I've never thought about the support group thing, but I will totally check it out. Thanks for the advice.
   
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