PART I – The AirBNB Fail

I had a major setback. Since I have mast cell activation disorder and multiple chemical sensitivity, hotels are my worst nightmare (unless they are hypoallergenic). So I made special arrangements for chemical free and scent free accommodations with my airbnb host. I messaged over 10 people to find the right fit because traveling is hard on my as is, I didn’t want to put any more stressors on my system.

On the second night the owners downstairs were “cleaning” the place with acetone around midnight. I was just falling asleep and suddenly felt super sick and nauseous. I called my mom in to see if I was crazy or if there was a smell (it’s funny how I naturally assume I’m being a hypochondriac before a ration human being lol). She confirmed there was indeed was a smell was coming up the vents and I went to get outside for air, but when I opened the door the fumes were even stronger outside my room.

Within seconds I face planted in the hallway starting to shake and cough. My lungs were burning and I was spasm-ing in and out.

I got outside with help but it took over an hour for the bronchial spasms and seizures to stop. I laid on the hard deck not giving AF (and truthfully hardly noticing until later) it was damp and cold.

My parents brought out the bed from inside and I slept on the deck and spent the next day out there too, even with windows open and my purifier going, nearly each time I came in the house I would have a seizure from the remaining fumes and start coughing.

I thought that this might truly be the end of me for once and all. But here I am haha, survived another day/night/experience from hell. I swear I was a murderer in my past life. 💁‍♀️

 

PART II – Appointments in Vancouver

I had two appointments with a wonderful Chinese medicine practitioner who does muscle testing and energy work. She previously identified and treated parasite and virus in my brain, lung and stomach. She was happy to conclude that some of my treatments had “held” from July, but not all.

We also worked on my nerve pain, which sadly resulted in 9/10 pain and a seizure (not a great mix), but thankfully the worst of it lasted under an hour. My second treatment with her was a less intense response, though I haven’t noticed as much benefit thus far. With the acetone causing a flare it is hard to say if the treatments were truly as effective as last time. I was so grateful to have a visit from my Lyme warrior friend and her cute puppy to cheer me up. It was much needed.

The Womens Complex Chronic Disease centre diagnosed me with Central Sensitivity Syndrome and Chronic Fatigue Syndrome. Unfortunately there is no cure for these, only management. It is my personal belief that as the Lyme gets under control the chronic fatigue and other secondary diseases and symptoms will subside. I just have to get strong first! On that note Jesse with KootenayFit is going to be helping me with exercise intolerance in addition to working with the clinic in Vancouver for further testing and improving mitochondrial health.

 

Part III – Infusio & Treatments

In lieu of recent information from Beverly Hills and my lack of progression forward (thank you wonky immune system and swollen brain), the medical team at Infusio has suggested to delay my follow up treatment. We are waiting for some lab work to return that could change the process of our next steps. However, it is looking as though I will need a full redo at the clinic unless I am able to get on IVIG or Xolair and it is enough to help turn things around for me. So I’m back to the IVIG/Xolair drawing board and politics that I was dealing with prior to Infusio, which is all too frustrating.  Without coverage these are $2-8,000 per month, IF I am even able to get them at all.

This big picture frustration can really eat a person up. So I’ve decided I am just going to focus on what I CAN do day-to-day to hopefully make for a healthier future while… “fighting the system” on the sidelines with my amazing immunologist when energy permits. It is really nice to have a doctor who is, and has gone to bat for me and I hope with our continued efforts to get the treatment and coverage I require to moving forward is an option.

 

Lots of love and thanks as always for your thoughts, prayers, love and support.

xox lex