My motivation to manage my PA...

[CH52]

I’ve finally gotten my life back! Took a long hard year but it’s all come together, especially the past 2 weeks. My goal was to XC Ski again this winter after a year of barely crossing my tiny one room off grid cabin. (I almost died a year ago.) I did just that the past 2 weeks! This is my happy place and being out in the woods makes me feel energized and alive. I am aware there will be ups and downs with my PA but I no longer live in fear of losing my life here. I wish you all well and a happy, healthy holiday and New year!

[CH52]

Thank you. It smells like a Christmas tree lot every day I walk out my door! It's a very rustic life but I built this tiny cabin and a small art studio entirely myself! It was scary thinking I could no longer manager to live out here alone and isolated the way I am. I feel much stronger and confident again.

[Sleepybunny]

Hi,

Wonderful to hear you have your life back. I'm sure that gives others who are struggling hope.

[CH52 in reply to Sleepybunny]

Hi Sleepybunny! Getting my life back has been and will continue to be a lifelong fight but now I'm more determined than ever to be involved and educated and if I have to "fight" the medical profession to get proper treatment I will not be intimidated or embarrassed about all these side affects that occasionally happen to my body. My doctors are great but they sometimes treat me like a feeble old woman. Well! I'm 65 but I'm not there yet!!! I refuse to sit around worrying about every little hiccup or slight dizzy spell and am just going to demand my numbers be discussed with me and not just be told they are doing ok or they are high. I am getting printouts of my tests and charting them and lots of times they correlate to any symptoms that crop back up so adjustments are needed in my treatment. I feel way more in control that way vs. the pat on the head and the "oh but your numbers look fine" routine! I'll continue to keep on this forum though as I have learned so much from others and it's what has kept me grounded. Best wishes to you Sleepybunny!!

[Sleepybunny in reply to CH52]

"and the "oh but your numbers look fine" routine!"

If I had accepted the "your numbers look fine routine" I suspect I would by now be showing signs of spinal problems and dementia symptoms.

Glad to hear you have the strength to be assertive.

[CH52 in reply to Sleepybunny]

I do still get occasional foggy brain symptoms and I know at this point they might never go away (and with age will probably only worsen!). Burning in leg muscles I ignore now and just keep exercising to oxygenate. I decided several months ago energy begets more energy and inactivity breeds just further inactivity. As long as I'm able I'm going to keep moving. Guess it's why I got the nickname Amazon Woman from my doctors when they saw how depleted I was and that I was still pushing myself And made it the several hour drive to the clinic on my own when by their admission, I should have been dead? I'm still laughing at myself for taking and literally dragging myself up the 2 flights of stairs that fateful day instead of the elevator because I was embarrassed that people would think me a lazy old woman! And maybe that's the key to all this? Keep a sense of humor, learn to laugh at yourself and continue to forge ahead when dealing with the inevitable bumps. The worse had all ready happened to me 22 years ago when I lost my 15 year old son. This, I can handle. Perspective., it's all perspective.

[Catlover3]

Wow...what a lovely place you live in! It is wonderful to hear that you are able to start living the life you want to. It gives me hope that my daughter may regain her life again too. Best wishes to you. Catlover3

[clivealive Forum Support]

I get your "drift" CH52 :}

Welcome back to the world of P.A. survivors...

[Sleepybunny in reply to clivealive]

clivealive A flurry of puns is all we need when feeling flaked out....

[clivealive Forum Support in reply to Sleepybunny]

It's snow joke Sleepybunny (and too late at night now, my mind has had a "white out" so I'll bid you goodnight).

[CH52 in reply to clivealive]

You still make me laugh!!!

[ljmulledy]

Yes!! Congratulations! What a feeling.