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Health: Three Years...

21 November 2017

My home in London. 2014.
3 years ago, I was living the dream in London making lifelong friends and studying for my Masters. On 21 November 2014 I went to see my physician after things got worse post my earlier episode of Tonsillitis. My health had deteriorated as if overnight going from one day when I was up and about to the next when I couldn't see clearly, I was experiencing terrible neuropathy and weakness and pain in my hands and feet meaning I had to crawl to the kitchen for a glass of water that was too heavy for me to hold and I needed friends' help getting down stairs and to/from the doctor's office. Life was impossible or so it felt. Mum even had to fly out on Thanksgiving Day to help me pack up and fly home for the unforeseeable future as I recovered.


The doctor on 21 November 2014 (3 years ago) said that I had Chronic Fatigue Syndrome/Post Viral Fatigue and even gave me a doctor's note to take to doctors and employers excusing me because of "fatigue". I couldn't help laugh because it sounded so insane and I couldn't imagine anyone taking this diagnosis serious. Thankfully my advisor/professor at the university was extremely helpful and has been throughout this crazy process. Friends were AMAZING (Huge shout outs to Natasha, Mafe and Ola) and I couldn't have felt more loved if I tried.
pre-surgery. 2016.
Fast forward 3 years and what has happened...

  • I was diagnosed with CERVICAL STENOSIS and DEGENERATIVE DISC DISEASE in Summer of 2016. This really came as a huge surprise and is thanks to my neurologist, Dr. Alboiny, for being thorough in his research!!!!
  • I was diagnosed with FIBROMYALGIA in January 2017.
  • I experienced with LYME supplements but felt no difference.
  • I gained 30+ lbs. thanks to LYRICA and a couple other medications. BOOO!
  • I had SURGERY on 7 September 2016 at USC. What an amazing facility and staff.
  • I've sampled almost all drugs possible but am down to two -- Gabapentin and Duloxetine.
  • I've been in physical and aquatic therapy since 2016.
  • I was able to complete my university assessments (not including the dissertation) for decent marks.
  • I have been to the ER twice, once having to stay in hospital for a week of studies.
  • Have my very own wheelchair and walker and shower bench.
  • Adopted a Yulin Survivor dog, Hastings Alyosha, in February 2017.
  • Fallen at the Dallas Fort Worth Airport and been laughed at by staff there!
  • Applying for disability... what a nightmare.
  • Used several types of wrist/hand braces without success.
  • Been told by pain management specialists there is nothing they can do for me.
  • Seen countless doctors and specialists locally and at Cedar Sinai and USC.
I'm still at home, folks. Yep. 

My rescue dog. February 2017.
I still cannot use my hands to even cut a piece of fruit or meat. I use the free Apple dictation service (Horrid) and hunt/peck with my fingers. I use pillows to prop my hands/arms up to help lessen the pain. I still cannot walk without my walker or the arm of a friend/family member. There is constant neuropathy and pain in my hands and feet. I am using ice at all times when home for back, neck and legs. 
with Ashley at Sister Act. 2017.
I am not able to work or finish school in my current state. And now to add more to think about, I found out that my university has a 'standard' limit for how many years a student can be enrolled - 4 - and that means I am no longer enrolled as a student and would have to RE-enroll (£$) to complete my graduation project/dissertation.
My girlfriend Laura took me to tea for my birthday. 2017.
My happy days consist of some of the following: loving on my rescue dog (Hastings Alyosha) and our other rescue dog (Shadow), getting my afternoon nap (medication makes my fatigue/exhaustion even worse), making breakfast and lunch, being able to put away the dishes, making my bed and taking a shower, checking social media, taking the dogs on a short walk around the block, and/or maybe a conversation and visit from a friend. That's my day, folks. And usually I have 3-4 medical appointments per week so that takes up a lot of my time too.

And thanks to my blog I have been able to have excursions to the theatre or an art exhibit or the circus or etc. but those excursions come with a cost of 2 days at least of rest afterwards plus extreme pain when sitting or walking or just breathing.
an art exhibit i was able to attend in 2016.
Man, I did not mean to make this post a downer. Just wanted to share what's happened in the past 3 years. Trying to figure out what next... Physical therapist says I am walking better with more fluidity (no more tin soldier -- Yay!!) so that is probably our biggest cheer. Aside from that, nothing seems to be working much. We will continue to see... Right now my hands are screaming from hunting and pecking on the keyboard and my brain hurts from dealing with the faulty dictation service and I have a head cold (rah rah). To bed I go.

happy times in London with Natasha. 2014.
Have a great night and a huge thank you to all my amazing friends and family who've stood by me and not forgotten me and loved on me. I don't know if I would be here without y'all. <3 The hardest part of this illness is the "isolation". I cannot get myself out to see folks as I used to, I cannot pick up the phone without my hand spasming and I am often so tired and drained that the idea of texting someone is too trying and tiring. And i know people are busy and without me being at the same social gatherings it becomes hard too on others but without my true girlfriends and Derek I don't know how I would have survived the last 3 years without going seriously insane. 
So thank you Natasha, Ashley, Laurie, Laura, Kaz, Derek, Ola, Mafe, Heather and Misty for not forgetting me. Thank you for holding my hand, sending me mail, letting me cry, sitting there, and getting me out of the house among civilization!! You guys will never know how much you have helped.

3 comments:

  1. I'm sorry for all you have to go through. Invisible illnesses are the worst because they are so hard to diagnosis and treat. I have 3 and am very thankful to get them diagnosed and figure out how to manage them so I can still live. It's hard though because it's like a cloud hanging over me and I get scared of it getting worse and unmanageable.

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    1. thanks so much patricia lynne. sorry for your problems too! :(

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x Joy

 

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