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What's In A Name? If It's A Diagnoses Everything.


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Hello Everyone.

For those of you who remember me hello, and sorry I haven't been around. My computer was hit by a virus and was put to rest!! :D For Christmas I was given the choice of a new camera, (one I have been wanting my whole life!) Or a new computer. Needless to say I have taken many beautiful photographs! In my grandmothers things though was an old but workable computer. So here I am.

And for those I haven't met yet I look forward to talking to you.

I thought I would come here, and share with you all how I have been doing. First of all I have improved greatly with my health. But I believe that a large part of improvement was understanding what was wrong with me in the first place. In the topic title I say what is in a name? Well the name dysautonamia changed my life. I never thought I would be happy to get a diagnoses of something, but I am sure you all understand where I am coming from here, when you have suffered so long and mostly in silence (as who listen's when you "don't have anything wrong with you"?) it becomes a blessing just to know and understand why you feel the way you do.

I have been sick now for close to 6 years. But this last year was the first one that I knew why. I remember each holiday that passed thinking this is the first valentine's, aniversary, birthday, Easter....I'm sure you get it, that I understand what is going on with my body. It has been a deep blessing to know that and understand. It took the fear away and allowed me to deal with things one at a time instead of feeling like I was falling in some vast vaccant whole of pain and unexplained missery!!

And for me, like many others here, one diagnoses led to another. The most important of which (to me) was that I don't metabloize drugs properly. I knew that everytime I took something I was far sicker then before I took it, but like everything else, I had been convinced it was "all in my head" that I was just "afraid" of drugs. Now I know that the medications I took played a huge roll in my illness. The good thing for me is that the longer I go without any the better I get.

So here I am one year after diagnoses, and I can truly say it changed my life. First and foremost it helped me find peace and acceptance with what was wrong. Then I was given ways to help myself. Not cure myself, but help myself. I have been doing many things that have helped me, and have hope of recovering back to the girl I used to be. I know this is always something that will be here with me, and I believe that I will always have to be very careful, especially with what I put into my body, but I have great hope for a good, and happy future.

I hope everyone else here can find there own peace. Be good to yourselves. Remember to be kind to yourself, even if the people around you forget. You have been through a lot and deserve that!!

Take care everyone,

Hugs,

Suzy

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Suzy,

Great to hear from you! I am SO happy that you have found inner peace and that you are feeling better these days. I wish you all the best, and I hope that you continue to find positives and progress in your life. Enjoy taking pictures!

~ Broken_Shell

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WOWEEE FOUND SUZY!!!

ANd hello to all ...like Broken shell..

I am not on here as much. BUT I was so happy to SEE you on here Ms Suzy-Q~!! Glad you are coping better.

How did you find out about the drug metabolizing problem? What are you doing differently to be well?

I have so much to share too. Know what you mean when there is a "name" to the monster!!

I even have docs who see my history and have to look up the name of some it it..THEY have never heard of this and another problem diagnose.

Miss talking to you Suzy

WRITE when you can..PM..Email k?

Warmly with HUGS..Jan

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Hi Suzy!!! I'm so glad you're doing better physically and that you've found peace in knowing what's wrong with your body. Thank you for letting us know how you were doing. The camera sounds wonderful. Thanks so much for the update!

And good to see you, too, Jan! I'd love to hear how you've been doing lately.

I'm so thankful for this site, and for the connections, knowledge and encouragement that it brings to all of us!

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What a lovely post! I'm so glad to hear that you're feeling better and coming to terms with the whole life changing situation.

I'm in the process of trying to get a diagnosis myself and keep hoping it'll be soon. It's funny when you feel like you know what's wrong with you, but the doctors keep dragging their feet putting it all together. Frustrating too when they know so little about it and you have to keep trying to find that balance between stepping on toes and trying to make them see the evidence in front of their face. It's hard when they don't know what evidence they're supposed to be looking for.

So, even though I don't relish HAVING dysautonomia, since I have so many of the symptoms having it named would be wonderful and far preferable to just being labeled depressed, anxious, or crazy.

Glad things are looking up for you. You've helped motivate me to keep with getting an "official" name for it all. Sometimes I wonder why I need a doctor to validate what I'm experiencing in my body, but it does seem to be a common desire.

Enjoy that camera! :D Welcome back.

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Oh suzy good to hear how well you are doing! I was worried about you and hoping that things were still going well as you had stated on your last post a while back. Guessing that new doctor was finally able to help you out? Well pm if you want to catch up. God has been watching over all of us.

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Thanks for posting that. I am currently in the no diagnosis ****. Makes you crazy. I feel like I cant tell anyone what I have because if I am wrong, I can just see everyone rolling there eyes. I have no idea what to do next. I have been through so many docs who belittle me and send me on my way after 5 mins of their time. Right now I feel like just giving up!

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:) Hi again everyone,

So good to see so many familiar names, and a couple of new ones too!

Broken Shell, so good to hear from you. I remember not to long back both you and I were going through a rough patch together. I hope that means your doing well now too.

Hi Jan, good to hear from you! The drug metabolizing test was one I had done at mayo. If you are missing pathways for the drugs to travel through you don't metabolize them like normal people. So a normal adult dose would be like an overdose for me. And for about 8 months I was on all different kind of drugs while they were trying to figure out what was wrong. I had reactions to EVERYTHING. and the longer I took them the sicker I got. The sicker I got the more the doctors insited I needed more rather then less drugs. Really the only thing I am doing to help myself feel better is staying hydrated, not taking ANY medicine for any reason. I just have to bite the bullet and get through things. And as I started feeling better I was able to do more, I am even exercising regularly now. I am doing a lot to try and build my muscles, hoping that will help. How are you doing?? Last I heard from you you were still up in the air with quite a few diagnoses...Hope things are going better for you.

So good to hear from you to EM. I know the drug metabolism test makes all the difference for me. I haven't been to a doctor recently, though I do have a local one now that I seen about 6 months ago. He asked for all my paperwork from mayo clinic, and seemed very interested in these tests. The best part of that test for me is now I can tell doctors meds make me sick by a test I took, so they really believe me, and I don't have to "experiment" to "prove" to them what I am saying. Truly it is a dangerous thing. If a doctor doesn't know and gives you too much of a drug it puts you at high risk for overdose.

Thankful, so good to hear from you too!! I hope you are doing well. I will have to take some time and read on how everyone is doing. The camera is so great, and so much fun!! We took some beautiful pictures at the lake, and for valentines day!

Hi Chaos, I am really glad that my post helped to motivate you. Before I had a diagnoses, or even had ever heard the word dysautonomia, a family member of mine said to me "Why do you keep putting yourself through this? Your wasting everyones time (the doctors should be able to take care of real sick people) and money. You don't really want a diagnoses. It's a label you will have to carry with you your whole life!(what about the crazy anxious diagnoses??? Do you think I want to carry that one?)" It was a very hurtful thing they said, but made me just avoid doctors.......until my next big crash that landed me on the floor. I hope you get your diagnoses. Even if you have to step on some toes to do it!!

AZgirl, so good to hear from you thank you for worrying about my, but sorry to cause it.I hope you are doing good also. Still smoothing out some kinks on this computer, but will try to pm you. I think I have to change my e-mail though. take care.

Dazed&Confused, please don't give up!! I know exactly how you are feeling. It's like if you say something and you are wrong then no one believes you next time. I went through thinking I had MANY diseases. And the funny part is I was told I had been tested for EVERYTHING it wasn't possible for me to be sick. I found out about dysautonomia after a mayo doctor did a test for some antibodies. She told me she was doing this test that looks for cancer tumor antibodies. I shrugged it off because I figured like everything else it would be negative. Well it wasn't, and that was what started everything for me. I have counted before, and I think I have 8 diagnoses now. You may get an answer in a way you don't expect. So don't give up! PM me if you want. I will try to change my e-mail tonight so I will get it.

Hugs,

Suzy

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Suzy- nice to 'meet' you and hope to get to know you around here.

DazedandConfused- don't give up. I am in the same boat too. A difficult place to be! I've been through tests for endometriosis, interstitial cystitis, and had countless blood tests only to be told over and over "you are healthy". But I known something is wrong and I am almost CERTAIN I've hit the nail on the head with dysautonomia. I just need it proving. And you know what I am most afraid of?? NOT getting the diagnosis!!

I was talking to my boyfriend about why I need to drink so much water (he was trying to get me to cut down) and even he said "Is that medically proven yet". He didn't mean to but it really upset me that. *I* know my own body better than any doctor. It might not be 'proven' but that doesn't mean something isn't wrong!!!!

I understand how you feel but keep fighting- I'm sure it MUST be worth it in the end, and you are the expert in your body and you KNOW what's right and what isn't. So you NEED to find out so you can be HELPED!! Just because it hasn't been found yet doesn't mean it won't be, it just means it's harder to find! It's hard not to get discouraged, but try to keep going with the 'battle for a diagnosis'. We can be 'warriors for a diagnosis' together- along with anyone else in the same boat! ;)

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Oops, I accidentally pressed 'reply' after I edited my above post (instead of pressing 'complete edit') and ended up with TWO posts that were wrong because I'd forgotten to delete out the big quoted part! And then when 'editing' forgot I was editing and pressed reply, which duplicated the post I was editing! DOH! I can't see any option to delete this so if a moderator wants to, feel free- OR you can leave it as an example of BRAIN FOGGGG lol

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