Lllamageddon

Wolfspinner

WolfSpinner's Story

Colorado wilds

Age: 46 or better

A little bit about my journey:

My Diagnosis

ME, autoimmune

Time to Get Diagnosed

6 years

Year I was Diagnosed

2002

Sending Love to

Dr. Wicklund

Hospital I'd Recommend

UC Health Anschutz

This is my story:

After some needed gum graft surgery, I was shearing our rescue llamas. Usually I can do our small herd of 5 with no problem. Not that day. I woke the next day crying with pain, thus beginning my long journey to where I am today.
Originally, testing showed wonky IgG levels, other high indicators of inflammation. High dose steroids…over 60mg per day…worked at first, but as soon as we started the taper, the pain came roaring back. So, on to the rheumatologist

What a joke. Because I was nearly 70, I was instantly diagnosed with fibromyalgia. Problem being that I don’t have any of the bio markers. The doctors ignored the fact that as a fiber artist, I’ve worked with my hands for over 40 years. They ignored the fact that I’m a rancher, so I am strong (or was). I was accused of “just wanting drugs” (I take about 6 aspirin a year). When a young, arrogant doctor, ignoring my physical history, decided to do a “strength test” of squeezing his fingers, pushing and pulling his hands, while saying “At your age you should expect a few aches”, I decided not to be polite and do as requested. He didn’t believe I could push him.

I got sent to our local major teaching hospital. I won’t drag it out, but repeated visits (2 hours drive each way) saw me in tears, as doctor after doctor, nurse after nurse, insulted my intelligence, lied to me about test results, told me I was a druggie, and more.

I went to functional medicine doctors, who, despite high fees, were unable to help. I’m not gluten intolerant.

Meanwhile, a dear friend in Scotland said “Kris, have they even tested you for ME? (Myalgic Encephalomyelitis) and sent me links to the incredible ME Association in the UK I read. I sent questions. I got respectful, thoughtful replies. I got questions to ask my doctor.

Along with this, my acupuncturist decided to go back to square one, and has been working hard since then to treat me and my symptoms with the goal of relief. It’s not perfect, but I’m still walking.

Late in 2019, I took a last chance, based on the recommendation of a trusted friend, on a doctor. Imagine my surprise when he didn’t dismiss me, or the probability of ME. He ran tests, found that my EBV (Epstein Barr Virus, cause of mono) were sky high. He then found a flipped FGFR3 gene, which tends to cause muscle pain and weakness that can come and go, exhaustion, and other markers consistent with my ME. He agrees that I have ME!

Since then, we’ve tried IV steroid infusion, in hopes of kicking my immune system back into gear, some other medications, which haven’t shown the improvement we hoped. He keeps looking.

I’ve had to give up wonderful llama hikes, spinning on a treadle wheel and going to an electric wheel. Before ME, I loved going to fiber conferences, connecting with friends from across the world. That’s a no. Last time I tried, after ME hit, I had to come home early, and spent a week in bed

I now rely on acupuncture, CBD, and hope There is always hope

Let’s play 20 questions:

The song that keeps me going is:
We Gotta Get Outta This Place
I never leave home without my:
Mask
My go-to feel better movie is: 
If I was in the hospital, the celebrity I would most love to visit me would be:
Aaron Rogers
When I need to relax, I:
Spin/knit/weave/read
My favorite food is:
Dark, dark chocolate
The quote that keeps me going is:
I will survive
When I need a laugh, I:
Talk to the dog, the cat, the llamas
Meet my pets (or favorite stuffed animal):
5 rescue llamas, 1 silly Siamese, and my sweet Anatolian service dog, Purdy
My hero is:
Dr. Wicklund
When I’m having a down day I binge watch:
Nothing
My favorite book to get lost in is:
Anything Longmire
I want to be best friends with:
The thing I’m most proud of:
I regularly donate handspun items to our Wolf Sanctuary auction
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
Finding Dr. Wicklund
The most hilarious thing that has happened to me is:
Being mistaken for someone 20 years younger
It really means a lot when someone does this:
Asks if I need help
My favorite social media account to follow is:
The advice I would give to myself back at the beginning of this journey would be:
Keep fighting
Words of encouragement that I’d give to my fellow warriors are
Educate yourself, research, research, research
Follow my journey: https://www.etsy.com/shop/WildandWolfy?ref=seller-platform-mcnav

Submit YOUR Story!

You May Also Like…

CRPS Warrior

CRPS Warrior

For many years, I had off and on sciatic pain in my left leg. Tried various therapies to relieve the pain, but to no...

0 Comments

Submit a Comment

Your email address will not be published. Required fields are marked *

Pin It on Pinterest

Share This