DISCLAIMER: I am taking medications to help me manage my symptoms and if I post gibberish, please TELL ME! I fall asleep on the toilet sometimes (TMI, I know), but seriously, I am going to try to tell my story about my life in bits, but if I go off the rails, I expect my friends to say - “what are you doing!!!???”
It has been a long time since I have used Caring Bridge and I am struggling a bit. It seems my introduction was lost.
See, when you first get sick, all you want is to know what “IT” is called, but over the course of a decade and longer, you realize that putting a name to it means that another organ has failed or is failing.
I remember telling one of my Rheumatologists, that was extremely talented , that his best service to me would be to never find the name because he treated it so well.
Joel (hubby) and I were/are SO happy. I had finished a round of procedures to help with stability, low and back pain and was working hard on rehabilitation. We chose the plot, could smell the earth and selected our home and all the major construction details and moved into a temporary home in an apartment for 55+ living so it would be easier for me to make friends and to get around.
I knew things were getting worse. Most know I have to get my nutrition via my veins (intravenous nutrition) - since 1/2017. The Pandemic has an undercurrent / ripple effect that most people don’t realize exists.
First: I was taken off an autoimmune medicine I have been taking since 2009 for about 2 1/2 months Second: My disease process “had a party” Third: My IV nutrition had to use substitution chemicals due to supply chain issues and businesses closing down. Fourth: I began a downward decline of not tolerating my nutrition and stated losing weight and can’t stop.
So, here I am - “The Ripple Effect”.
My GI and intravenous care team is still actively looking, but I had to say “UNCLE” - no offense Jerry and Jim :) - because I needed to be able to just exhale without pain. Do just one thing without pain.
If all of this is a surprise to you - i got very good a faking my wellness. Up until the very end of my career.
Now, all I feel is love for people I have known along the way. I didn’t do this alone. I had the support of my family, my care team and my psychologist, Dr. Urszula Klich - who helped me through what I now understand is in medical terms “adjustment disorder”.
I really loved my job, and there were signs that things were off, but as the patient, you don’t always have the unbiased perspective. I didn’t. By the time I realized I had a condition called PoTS (Postural orthostatic tachycardia syndrome).
It was about that time my joints started to literally separate and hurt in a way that I can’t really describe and I began having allergies to things I have never been allergic to before.
Thank you for giving me the most beautiful life and please share stories - my girls want to know EVERYTHING —wink wink for my high school friends. They don’t need to know EVERYTHING! :) But all joking aside - I am still me - through and through.
My parents are so strong. If you don’t know, we lost my brother in 2011. I thought it was the cruelest thing for parents to lose a child, but to lose two?!? Pray, Meditate, ... , whatever you do - please do it because I love my parents so much that it breaks me to think about them going through that pain again.
Now, onto my goal - I believe in networks - I hope through my Caring Bridge, people can meet, reconnect, make peace, and friends through me. I want to celebrate my beautiful life. It is just for me. I have known since 2009 that the light at the end of the tunnel is a train :).