It's Been A Long Time...(too Long!)

[sandymbme]

So about a year and a half ago, five weeks after I got married, a migraine started that would haunt me every single day for nine awful months. In the process of trying to make it stop, I lucked out and saw a doctor at the Cleveland Clinic who thought I very well could have pots. Dr. Stillman sent me for a tilt table test and I failed with flying colors. Like most of you, I had never heard of pots until I was diagnosed with it. I was referred to this web site, and it quickly became a source of information and support during a very scary time. What I did not forsee, was the fact that my fledgling marriage was going to quickly collapse under the strain.

So I was forced to drop off the face of the earth. My ex-husband was less than generous in our seperation and divorce, and I found myself going from upper middle class to poverty level in what seemed a heartbeat. (And mine go pretty fast! LOL) I no longer had a computer, or internet access at a time when I could have desperately used this resource. My health has gone into a tailspin I can not seem to shake out of, despite various test, hospitalizations, med changes, lifestyle changes, etc. Ironically, I feel more blessed than I ever have in my life. I write this post due to the generosity of my aunt who felt being able to communicate with fellow potsy people was so necessary she gave me an incredibly generous birthday present of a laptop. My aunt and my mother have both dropped everything at a moments notice to help care for me when needed. My friends, who had been allowed only very limited access while I was married, have been amazing in their support and care for me. I spent more days in the hospital alone than I care to think about while I was married, but now that I am "alone" it seems that I am always surrounded by love.

So my health does suck in a big way right now, no two ways about it. I am terrified of being disabled by my condition. I will be 34 in just a few weeks, but I frequetly rely on a cane for balance, as mine has become unreliable. I have a host of GI problems that seem impossible to diagnose, let alone effectively treat. My migraines are once again causing me a host of difficulties. I am having more near syncope episodes than I have had in years, and don't even necessarily need to stand for the world to start spinning away from me. But again I must count my blessings. I am being treated by one of the world's foremost authorities on pots (who also happens to be one of the kindest and most compassionate human beings I have ever had the priveledge of meeting), I seem to have finally assembled a team of local docs who are willing to be part of a cohesive treatment team, and found a really great GP who is great at playing grand central station for all of my mess.

So my divorce was final in april, and I now live in peaceful companionship with my 13 year old cat. (I have no idea how I would cope without her, she is a greater comfort than I could ever adequetly describe. We live in this really great urban historic neighborhood where all my neighbors actually talk to one another. And while my apartment may be the size of a matchbox, I can usually stay on top of keeping it clean even on my worst days. I thought I would be claustraphobic here, going from a great big house to a 500 square foot apartment, but I have come to really appreciate its' size as I have grown more ill. And some of those same great neighbors happily come in and feed and water the kitty when I end up in the hospital. So I intend to be a regular voice on this message board, but I thought it might be good/helpful/interesting to hear where I have been this last year or so. I missed it!

[janiedelite]

Hi Sandyshell,

Thank you so much for sharing your story. Your perspective is so uplifting! I'm glad you are "back." I picked the username "thankful" because of all the things POTS has made me grateful for, like you... good friends and family mostly.

I look forward to hearing how things are going!

[erikainorlando]

Glad to hear from you. I am a new voice since your "leave". I look forward to reading your posts. I am sorry to hear of your failed marraige, illness can try relationships that is for sure. But it sounds like you havfe so much to give and so much hope to share....I am glad you are back.

Erika

[carinara]

Nice to hear from you. Iam so sorry for what you have been through. I can so relate to you, because i also went through a ?nightmare? divorce with POTS. I?m so glad that you have so many nice and loving people around that

Are helping and supporting you. Isnt it wonderfull how the universe works? At first we might be scared to do

the final step and get separated or divorced because we don?t know how to handle all of this (especially with POTS)

on our own. But then, when we finally do, another door openes up and we are blessed with love from other sources.Please never give up looking for the blessing in every situation, even though sometimes it feels like there is

none, there always is one in the end.

I wish you all the best an am looking forward reading your posts.

A big hug from

carinara

[ramakentesh]

Gees that is heavy. Sorry to hear that.

I can relate re the longterm migraine though - I had a migraine aura that lasted months and months - not much fun. Still have visual snow all day every day too.