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firewatcher

For Auld Lang Syne

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Merry Christmas!

My Husband's family always looks back through old pictures and slides every Christmas, remembering old stories and honoring family members that have passed on. Where are all the first members of the forum? Do they still lurk and just not post? Are they "cured?" (I'd love to hear that!) Were their symptoms transient and now they have back their old lives? Did they find out why if not? With 1554 registered members, how many are gone either from the forum or this world?

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Good question, I wonder where many names I used to recognize went as well.

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Guest tearose

I'm one of those "ole timers" too!

I have been fortunate to pop on for at least once a week and keep in touch. I was able to share both the times of relapse and remission over the years. The internet technology has been hard to keep up with but my forum activity is more valuable than all those other techno things. I feel like here, we are family.

Some people just came for awhile and left. Those I felt close to I would pm and check up on. Some who left and I knew over the years, when they shared, said that they: chose to join other forums especially if they had another issue to manage, could not to be on the computer, were too busy with other things, were not needing support...that is all I can remember. Everyone seemed happy for the forum and the availability to reach out if and when they needed. I remember the "crazies" too, they come and go rather fast...

There was only one bad stretch for me here...one crazy person did not like that I refused to accept the "we all have the same diagnosis and treatment plan" and opened up numerous member accounts and tried to "take me down" because of my refusal to accept the one size fits all diagnosis. I went down from a 5 star rating because of that nonsense.

Fortunately, I have learned that just as in the 3-D world, bias and hurt can be let go of to make room for all that is good and lovely.

I moved on and am still here with and for those who truly know and appreciate me.

I joined in Jan of 2004 so I am nearing my 6th year.

Okay, time to do my hydration and caffeine, raise your water glass or mug and join me in a toast to DINET and to us all.

best regards,

tearose

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Hi! I've been a member since October 2003. I still have POTS, but I am more successful at living with it than when the symptoms first appeared. I had to modify my lifestyle in order to improve my life. I also joined this forum to learn as much as possible to help myself.

For me, a big part of learning to live with POTS had to do with, decreasing the anxiety that came along with not knowing what was going on with me, and having no idea what to do about it. As time went on, I did each of the following to help myself:

1 - joined DINET and became an active participant - I learned much

2 - decreased my fulltime work to part time, and then to disability retirement

3 - exercised my abdominal muscles, leg muscles in moderation

4 - walked (as exercise) in moderation. (The amount I am able to tolerate fluctuates.)

5 - ingested small amounts of caffeine (in the form of chocolate) as a stimulant to my ANS (though not every day)

6 - drank water frequently, and used salt on food often

7 - tried many medications over the years like florinef, klonopin, cortef and found my best bet is no medication

8 - slept inclined (but have slept this way before POTS)

9 - managed my activity level so as not to overdo (if possible), i.e. "on one day", "off the next"

10 - limited my carbohydrate intake and amount of food ingested at one time so as not to stress my system

11 - took several supplements (I chose my supplements over time as I acquired knowledge.)

I also take several prescriptions to manage my allergies, my GERD, my thyroid and my interstitial cystitis.

I will tell people about myself only if it is asked, or if it is necessary. Other than that, I do not discuss myself (except on this forum, of course).

I am fully aware that each day is a gift, and that I am not the only one with a daily invisible struggle. Other people have their own burdens, like cancer, heart disease, mental illness, family situations, financial stresses, you name it, some of which cannot be seen either.

I accept what is, but as time goes on I learn more and more about what helps me. To "accept what is" does not preclude "seeking more information".

I also try to help others who are in a different stage of learning to cope than I am.

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I'm an "advanced member". Joined Dec 2003 after the worst of my POTS symptoms resolved. Over this time I have been able to work--went from part-time (starting August 2003) to full time work in 2007. I have occasional flare-ups, but have been in generally good health. In my case, pregnancy was the agravating factor.

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Wow. When did I get so old? I had to look back at my registered date and apparently it's been six years here for me. Amazing.

I remember when I was first diagnosed with POTS shortly after joining the boards. I was out on yet another round of short term disability from my work and when I got the official diagnosis from my cardiologist after the TTT at the hospital ... I wrote to my boss and told him 'GOOD NEWS I have a diagnosis, i'm sure that i'll be able to treat this now that I know what it is.'

I lasted another four years working full-time ... which eventually worked it's way into most of the time from home ... until I could no longer continue to push myself beyond what my body was capable and in 2007 I was left no choice but to abandon my career.

Even in 2007, I was telling myself ... 'if you just rest, you'll finally be able to recover.' But as the other 'old timers' here know ... autonomic dysfunction doesn't always auto-magically go away. It does wax and wane for some of us, it does blossom into new adventures from time to time but for many it is a life limiting illness that may last a life time.

Of course we never know what the future may bring.

Here's to new research and new possiblitites in the New Year!

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I check in a couple of times a week but really don't have much energy to think let alone make a post. At any rate I usually find an answer to something that's bothering me, thanks to all you wonderful people on DINET. I still have no definite diagnosis and will see, on Feb.9th, 2010, after a year's wait, a 4th neurologist. I'm hoping he'll be the one who can help yet I'm also afraid that this will be another disappointment.

There is something now that I'm sure some if not several of you will have experienced. I was scheduled for a uro dynamics test but then moved to a new city. So I cancelled it and have seen a new doc. She said she'd refer me to a 'uro-gyno' specialist and I finally have an appt but with a gyno only, who does minor gyno surgery. My former doc never mentioned surgery and neither did my new doc. I did a google search for uro dynamics test and it sounds most unpleasant.

I'm totally puzzled because my problem is that if I don't get to a bathroom as soon as I get the urge to pee, it just flows out. And you all know how much we have to drink.

At any rate, can anyone tell me if I do need to see this gyno? I have to see my new doc to ask her why I'm not seeing the ur0-gyno specialist she first talked about, but it would be nice to have some info to 'take along with me'. Thanks so much for any help you may be able to give.

Mary P

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Mary,

If I had to choose what to do in your situation, I'd prefer a doctor with more training. To me, a uro-gynecologist would have more info about causes and treatments for your condition. That's my opinion only and I'm not a doctor.

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futurehope,

Thank you for responding. I 'll tell my new doc that I'd feel better with the urogynecologist and ask her why she changed her mind about whom I should see. I'm scared about the whole situation. I dread all surgeries because I'm in such a weakened state.

Mary P

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I joined in April 2004. Like some of the other posters, I have my ups and downs. Sometimes I feel great for a long time and then I start to be symptomatic again. I read a lot, but dont post often. Its hard to find time with 2 little ones running around.

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I joined in 2005, after my POTS diagnosis at Cleveland Clinic. It was so nice joining this group, as everyone just sort of took me in and wrapped me in support. I felt like I had come home.

Since that time, it's been found that I have a mast cell disorder, Addison's Disease probably from a pituitary issue, and some other stuff going on, so I've joined support groups for those issues, spending a lot of time learning about my other issues. I re-visit here, from time to time, trying to get caught back up on everyone else, and asking a few questions of my own, as the people here are so knowledgable about so many things.

I still struggle with Dysautonomia as part of the other issues I deal with, so I will continue to look to this group for support.

Lindajoy

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