The Journey with Lyme

02/09/2024

So true.

While they want so desperately to live a full life connecting with others and showing up when they say they will, people with chronic illness don’t have the privilege of knowing how they will feel each and every day. They may wish they could be more predictable, but their illness controls the outcome.

If they fail you, please understand that they are more disappointed than you could ever be. They have to live with the anguish of letting you down on top of the physical pain they endure. All they have is hopeful intention and often it is met with utter defeat. -Christine Carter

https://themighty.com/topic/chronic-illness/being-sick-and-how-to-be-supportive/

01/05/2023

Here we go!!! It’s that time. Let’s get it done!

It’s so crazy to think I haven’t had a single: cold, runny nose, covid, sore throat, cough, fever … in 4 years now!!! Like how is that possible?!

But… still struggle daily with: intense nerve pain, swelling, reactions to so many things, vertigo, hair loss, skin irritations, and muscle weakness.

09/26/2022

Waiting at the U of A oral medicine clinic for the quarterly gum injections. It’s a brutal appt but helps over the course of the following 3 months.

06/16/2022

https://youtu.be/f8pBkzUwb88

The Quiet Epidemic (TQE) is a feature-length documentary about Lyme and tick-borne disease. For updates, follow TQE on social media:Facebook: https://www.fac...

04/04/2022

Sorry for the gross shots. This is Lyme. This is when you immune system reacts to EVERYTHING. Brutal. Extremely uncomfortable.

04/04/2022

5 hour iron IV. Maybe I’ll be able to make it through a day without head bobbing or arms falling when doing hair. Fingers crossed. Hoping for some energy!

01/06/2022

My prescription from my November NY dr appt finally arrived today- 2 months later. Better late than never. Really hopeful for this!

11/19/2021

It’s been a tough past month overall health-wise and sometimes I have to remind myself that my pain doesn’t define everything. It can be so darn consuming and hard to remember that. Some days are so hard to navigate and just plain exhausting.

I’m just really tired of not being able to wear a winter jacket, a scarf, a necklace, carry a purse, wear a sweater, etc. The Canadian climate does not treat me well in this regard. I always joke I should be living in the Caribbean.

Currently waiting on bloodwork results from my NY appt and trying to line up the US scripts and recommendations, here in Canada, which is always a bit of a process. Scripts don’t line up directly and appts here still have longer wait times due to CoVid.

Having a rough day, overall, but as soon as I feel well enough I plan to start this book sent to me by the Chronic Pain Clinic. The title intrigues me greatly and I’m optimistic it can help with my outlook and battle in dealing with pain.

11/10/2021

Back from my appt with Dr. Frid. Always so amazing to see her. Her knowledge on autoimmune issues is second to none. Her insight and ideas are current and innovative. I can’t wait to take her notes to my specialist here and run through it.

While I was there I got a chance to have an infusion of all essential vitamins as well as a detox infusion that is used to: improve immune function, reduce inflammation, help fight disease, and keep your body from becoming resistant to drugs.

I sent away some current bloodwork to see where I am at and what I am currently still battling at this point. So thankful for this appt and opportunity to go. Thanks for being my support Christy Franklin as we ran around NY to labs and fed ex with my bloodwork. So grateful! Thanks CWT Vacations Lloydminster for all your help as well. ❤️

11/05/2021

On way soon to see Dr Frid! Hopeful and excited ❤️✈️

09/23/2021

It just never goes away…

Tonight I’m dealing with painfully swollen gums after an episode of intense nausea and neck spasms.

I have figured out clearly that any time span >10 min of looking down without a break (ex. Marking, reading, planning, computer) results in severe muscle/nerve spasms of my neck, intense burning pain, immediately followed by balance being thrown off and extreme nausea that takes me a few solid hours to recover from. I have to do anything that requires looking down in 0-10 min intervals or I am totally and completely hooped. I really don’t know what happens in my neck/system to cause this but it is so debilitating when it happens.

I am sure I will never be free of this illness. It’s more predictable all the time, but I’m not sure if any less of a struggle. Tired of everything having to balanced so carefully and thinking through every action in detail to avoid episodes like this.