My Introduction

[mae]

Hi,

I'm not official yet about a week a way I hope. I am also sick all the time for the past year....For four days until today I actually felt better than I have in a long time and I thought I was HEALED or something, and it just hit me out of nowhere bad as I've ever been.....Its hard and it kinda made me more depressed but I have to be grateful I did feel like I felt before THE ILLNESS CAME, but I was scared and cautious and it felt unreal. The only thing I found that could have improved me for those few days is it is when all hormones were at their peak and it goes downhill from here hopefully next month I'll have another Healed experience.

This condition is affecting every aspect of my body mind and soul, I'm in a constant nightmare and I feel like I'm trapped in a deteriorating body, I wish I could just lay down and feel slightly better but I have 2 girls one is 2 and one is 1 so I'm constantly jumping up and everything else that comes along with motherhood its SO HARD I say WHY ME alot but I stop and say I could be worse I have to keep going . Getting a DX will help I believe so then I don't have to think I'm dying every minute of the day, because thats how I feel. I feel punished for something and I just wanna fix it . Sorry I sound alittle crazy when I feel this bad I tend to ramble. I sometimes think I have brain cancer or something but I had an MRI and it was completely normal. I feel like I can't think straight, I get numbness, always funny looking skin blood pooling, my face is hot my fingers are freezing, outta breath doing nothing, heart racing everytime I stand, dizziness -----rocking on a boat and I have motion sickness from boats elevators,escalators. Overstimulated when I leave the house like everything is moving so fast,loud,bright, and inside I just wanna scream and say STOP!!!!!!! I never imagined this would happen and I'm sure none of you did either its good to know I'm not alone in a sense but I hate we have to suffer and its such a mystery. Its the worse feeling to go to a Doctor and have to prove your really sick and then once they do the basic things Like check heart rate while standing and do the special BP check then they start believing you. But thats months to years later since the illness began its really ridiculous. And I'm really pissed!!!!!!! Most of us knew our own DX before the doctors had a clue you know why because WE took the time to research and we care about ourselves I searched for a year straight online (****THANKS GOOGLE****) every symptom that fit a disease I had to go to the doctor and say test me for this and one by one "I" ruled them out why the **** do they get payed????? I've had docs say your depressed, and I say well yeah why shouldn't I be you can't find out whats wrong with me! I've had docs say you have Fibromyalgia and I didn't have really any pain. And many more say nothings wrong with you while looking at my purple feet when standing or one said Raynolds and I wasn't even cold , they just GUESS now and hope you leave and never come back or go to someone else. Maybe the doctors should use GOOGLE because everything they learnt in college must have been forgotten they should have FOLLOWUP courses like hairstyles they are suppose to have Present knowledge health issues don't stop when they leave school .Okay I'm done and so sorry I really had to vent......

Thanks for reading

Mae

[all4family]

Hi Mae,

Welcome! though so sorry for what you have gone through that brought you here. I have to say as I read your post I teared up, and then said yeah through the whole thing in agreement and understanding.

I say why me all the time! It's hard not to. Why any of us?! I want to scream and say stop too, but I'm sure it would just make me pass out!!! I am so sorry that you are going through this with your kids at such a young age. According to my doctors I had everything from anxiety, to conversion disorder, to hypochondria, and the final straw for me was anorexia!!! I was told I drank my water wrong, and swallowed air, and that is what was causing my vomitting!

I know you will find a lot of support and understanding on this board!! I will look forward to talking to you. Take care!

Hugs

Suzy

[firewatcher]

Oh Mae, sister, preach on! I have said everything you said at least a hundred times already! Welcome to our world of dysautonomia! Remember, sweetie, Motherhood IS going to be harder for YOU than the other mothers you see. Only they won't get it, sorry. Vent, cry, whine, question away.

I've said it before, I'll say it again: This is the single best source of information and support for dysautonomia there is on the internet.

Welcome, but I am sorry you are here with me.

[Broken_Shell]

Hi Mae,

Welcome aboard. I am sorry about what is happening to you, but I hope that you will find the forum a great source of information and support. Hang in there and feel free to browse old post topics and ask questions. You will probably sit in front of your computer with your jaw dropped saying, "oh my gosh... I didn't think I would ever heard someone else say that!" Well, that is if you can sit at the computer long enough with having a 1 year old and 2 year old! I applaud you for trying to stay strong and positive for them.

Take Care, Broken_Shell

[janiedelite]

Hi Mae,

I'm sorry you have a reason to be on this forum, but I'm glad you found us! You said you were "a week away" from diagnosis... are you getting tests back or something? And yes, I was told my purple feet were Raynauds and red feet were Erythromelalgia. I hope you can get some answers soon. As you've probably figured out, there aren't cures for dysautonomia but many people get symptom improvement with certain treatments.

Let us know how things are going, Janie