Remember The Doctor Who Said My Pots Was In My Head?

[LindaJoy]

Hi, everyone,

Remember the doctor who, in the hospital a few weeks ago, told me that my POTS was just in my head, and everyone advised me to write him a letter? Well, I did. It took me days to get the letter right. By the time I was done, it was four or five pages long, and I had the lab work and doctors' notes to go with it. I read it to my husband, then went to save it onto a disc to print on his computer since my printer was out of ink, and the disc was corrupted and turned my entire letter into wing-dings. It could not be saved. I cried for a few hours.

Instead of re-writing the letter, I thought, "Hey, maybe this was meant to happen for a reason." I've been thinking about starting a chronic illness support group in my area, since we don't have one and I, along with so many others, can certainly use it, so, instead of just venting my anger at one doctor, I decided to put my energy (since I have so very little of it) to better use and start this group.

I found someone--get this--at the same hospital where I was treated so poorly so many times before, to help me get the group off the ground. We start in September. Our meetings will be held in this same hospital's new cafeteria meeting room. This hospital is even going to sponsor the letters I'm sending to all of the doctors in my area, alerting them to this new support group.

I'm excited, yet soooooooooo nervous. If anyone has any ideas for me, as facilitator, please don't be shy--let me know. I'm up for all the suggestions you have.

I just thought I'd let you know that something good, I hope, is coming from such a negative experience.

Take care.

Lindajoy

P.S. This forum is definitely going to be mentioned to those in my group who have autonomic problems. I've sent quite a few people this way already, including doctors. The doctor who's helping me start the group has been here recently, too. He wanted to learn about POTS--had never heard of it and thought it would be important in his practice. Good guy!!

[dsdmom]

I think what you are doing is wonderful! I don't have any advice for you but just wanted to say kudos - and I wish I lived close by so I could take part. Good luck!

[Maxine]

Just wanted to wish you the best of luck!

Your doing a great thing---

Never give up on helping others-------even the tiniest good deed can mean the world to someone else.

Turning your bad experiences into helping others can help them avoid the same grief you have gone through.

Keep the faith.

Maxine :0)

[ajw4790]

Hi!

Sounds like a great idea!

Where at in Ohio?

[Ernie]

Hi,

This is a wonderful project. Go ahead with it. A lot of people need it. It will be both demanding and fulfilling.

[carinara]

This is a wonderfull thing you are doing. I believe that things always happen for a reason. And loosing your letter was probably ment to be. Iam sure your going to help so many people with this group. I wish i knew of a group around were i live. Good luck and all the best.

carinara

[LindaJoy]

Thank you, everyone, for your support. The group will be in Lima, Ohio. ajw4055, are you near here?

Anyone here close to Lima, Ohio, PLEASE feel free to join us! I would love to meet you all. It would be great to have my POTS friends at the meetings. I know I wouldn't be so nervous then. You all always make me feel at home when I'm here. That's how I want everyone who attends our chronic illness support meetings to feel, too.

Lindajoy

[Tessa]

Lindajoy

I am with you that not having ink... and that the letter ended in the dustbin... was for a very good reason.

Congratulations for starting the group and for u nderstanding that your energy could have a better use!!!

Excellent idea!!!!

I am sure that you will help many people and... That?s the most important thing.

Love,

TEssa

[ajw4790]

Hi,

Yeah, I am not too close, but who knows I could travel once or twice. Keep us updated!

It was a wonderful idea and I am glad it seems to be coming together really well. I am glad the hospital is supporting you!

Good luck!!!

[jbrian00]

I do understand your frusturation when a doc tells you your symptoms are all in your head. When I first developed panic/orthostatic tachy, I became incredibly anxious about my health, particularly cardiovascular since that's where most of my symptoms manifested. But all heart tests came back negative, and since I still showed concern about my heart to my PCP, he diagnosed me as being a hypochondriac and even prescribed an antipsychotic med for me! Needless to say, he's not my doc anymore.

James

[Maxine]

Good for you James---

You have to fire the ignorant and arrogant docs. Actually, sometimes it can be insecurity, as some doctors can't handle not knowing what is wrong with us, so they need to tell us we're suffering from some kind of mental illness. I would have a lot more respect for them if they would just step up to the plate and say they didn't know about dysautonomia, EDS ect., then offer a little compassion by offering to do the best they can to help us find someone who can help.

Some doctors just have more of an intense need to keep their egos in check, rather then have the intense passion for practicing REAL medicine by helping their patients get well, or have a better quality of life.

Maxine :0)

[Mary P]

Hi Lindajoy,

What a wonderful and selfless act you are undertaking by forming a support group for others. You will be reaching out to others who may very well have been treated just as shabbily and disrespectfully as you have. With the hospital allowing you to host the get-togethers there, this says a lot for your determination not to let the doctors hold total power over you.

Good for you and the best of luck with this venture. I could never begin a group as you have but I'd surely be among the first to join should I ever hear of one in my area.

You go girl!!

Mary P

[LindaJoy]

Again, thank you, everyone, for your support. As I said, I'm very nervous about this venture, especially since I'm not the strongest health-wise right now. Your encouragement really, really helps. I hope you all know that.

The doctor who's helping me just called yesterday. Our first meeting will be September 2nd, then the first Tuesday of every month following that. He has the room reserved for our meetings until December of 2009!. It's becoming more and more real all the time!

Thanks, again.

Linda

[Megan]

I go to school in Ada (about 20 minutes away)! I would love to join you if I find I have the time once school starts back. I would miss the first meeting, but could go to others. As the time gets closer, I'll ask you more about specifics. This is a great thing you're doing!

Meg

[DADofPotsSon]

Ada with POTS? Hmmm, that is where my son #2 goes to school and he also has POTS. I will let him know about these proposed meetings in Lima, he may want to attend.

DADofPotsSon

[Megan]

Does your son go to Ohio Northern? (or maybe he's in high school, I guess I don't know) I wasn't aware that any one else at my school dealt with this. The disability office seems to think I'm an anomaly! If he wants to talk to someone in a similar position, I'd be willing to meet him. Let me know or PM me.

Meg

[DADofPotsSon]

Meg

Yes, he is a senior at Ohio Northern studying Civil Engineering, and I breifly discussed the proposed Lima meetings with him on thursday. During his first year the security personnel knew him quite well and so did the Liberty/ADA EMT's with 14 trips to the ER. Meg wrote: "The disability office seems to think I'm an anomaly!" This is not the case, in fact he had several meetings with them as they were concerned about his safety, etc...! I will send you a PM.

DADofPotsSon

[Megan]

Well, I'm glad to know I'm not the only one so close to security...they notice when I get a hair cut!

Meg

[momofsara]

Hooray for you-- and best wishes with your new group. Im sure many people with benefit from having a support group to belong to. Congratulations on having a local hospital willing to participate. Susan

[LindaJoy]

Hey, I'm glad I may be meeting a couple of you! Meg and DadofPOTSSon, my brother went to Ohio Northern years ago, and he has Dysautonomia, as well. Hmmm....in the water? Kidding!!!

PM me for more specifics, if you'd like, as September gets closer. The October meeting is the 7th. I'm hoping we'll have a speaker that night--the psychologist who's helping me start the group. I think he'll be addressing the question, "How in the world so I keep a positive attitude when chronic illness or pain is my constant companion?" It should be interesting as he's a pretty interesting (funny) person.

I'm looking forward to meeting you two (and your son, DADof POTSSon).

And, again, thank you for all of the well wishes here. I just got out of the hospital again (for my eosinophilic disorder. Had to go on IV steroids--reacting to all foods right now, with anaphylaxis), so my energy level is pretty low, but the group work keeps me going.

Take care, all.

Lindajoy