Living in Hope

Maika Buchmiller's Story

Highland, Utah

Age: 25-36

A little bit about my journey:

My Diagnosis

SAPHO Syndrome, CRPS, Chronic Migraines, Polycystic kidney disease

Time to Get Diagnosed

About 6 years

Year I was Diagnosed

I think 2010

Sending Love to

Matthew Mainord, Scott Belliston, Tracy Frech

Hospital I'd Recommend

University of Utah, or IHC in Provo

This is my story:

I was 19 when I started to not feel well. I noticed my left rib was swollen and it hurt extremely bad and was so sensitive to the the touch. My dr took some blood work and said my ANA level was high and so I was sent to the U of U hospital. They diagnosed me with Lupus and started treatment. Over time, I kept getting worse. I wasn’t responding to the medication. They tested my blood again, ANA levels went down. I no longer had lupus but I had some Autoimmune disease. They just didn’t know what. They tried all sorts of medication. Steroids, steroid therapy and learned that steroids made it extremely worse. So they did a biopsy of my rib. All they could find was a little bit of bone growth but nothing that could tell them anything significant. According to them. That’s when Dr. FRECH requested me as her patient. She researched everything to try and and help me. Mean while, person meds was all they could treat me for. In between other failed medication. I even had a liver biopsy, that just told them my pain meds were causing fat around the liver. I would go in flares. So I did have weeks of wellness and a life. I had failed jobs because the bosses couldn’t handle my illness. Until one job could they were awesome. College was always hard. I was always dropping out because I wasn’t well enough. Then my kidneys started hurting, found out I had Polycystic Kidney disease. Nothing to do there except watch my salt intake. After years of no relief, finally Dr.Frech put a name to my illness. SAPHO syndrome. She said it was the best fit for my symptoms but I didn’t have all the letters of SAPHO. Also, I Still wasn’t responding to treatment. But it was the best fit. So on the chart it went. It was that or I have a new disease. So I dealt with it. Just taking pain meds, trying to work, trying school again. School was going great this time. I was a history major. I had a great internship working on documentaries, and the world was opening up for me in the history dept. Work was going amazing. Then I stared to crash. I needed so much iron infusions, I had to drop out of school, and I was working 1 hour a day, then nothing. A permanent flare struck. Voice gone.
Forced to live with my parents. My life completely changed. Finally,a 7th rib removal was approved. It was the dream to fix it all. They found staph hiding in the bone. My voice came back. I was in order health for 2 weeks. Then the pain, all my symptoms came crashing back. Only this time it disabled me. I’m now walking with 2 canes. Living with my parents. I was granted disability and I’m so grateful. Everyday I live in pain. Migraines all the time. I’m on a new a medication that has helped some, but not enough to give my life back. I’m living a new life. And each day I learn something new. Something humbling. I know there’s hope to be well. There’s always hope. And I believe there is purpose to everything. No matter how painful. It’s what you learn from it.

Let’s play 20 questions:

The song that keeps me going is:
I never leave home without my:
Pillow. I need a pillow between my left arm and rib
My go-to feel better movie is: 
Either Saving Private Ryan, or any Chic Flic
If I was in the hospital, the celebrity I would most love to visit me would be:
Tough one.... possibly Theo James
When I need to relax, I:
I lay on my bed, (it's adjustable) so I adjust the legs and head, put on Ray Lamontagne and just lay there.
My favorite food is:
It's like chicken alfredo, but really, the sauce is a straugenoff with chicken on noodles. But if we're talking junk food, chips or butter pop corn.
The quote that keeps me going is:
"Why not me?" If something bad has happened and you say why me? Change it to why not me and find the positive.
When I need a laugh, I:
I look at old pictures or watch F.R.I.E.N.D.S
Meet my pets (or favorite stuffed animal):
My hero is:
Probably both my parents. And my Aunt.
When I’m having a down day I binge watch:
Offspring
My favorite book to get lost in is:
Hmmm. There are lots... but I'll say "Sense and Sensibility" for now. I got brain fog for the other one.
I want to be best friends with:
James Corden.
The thing I’m most proud of:
My Thesis. And that I haven't given up.
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
So many. I was approved disability, my student loans were written off, I've met some really incredible people. Including the Chronic Warrior people. They're like my best friends.
The most hilarious thing that has happened to me is:
I don't know... funny things do happen but I can't think.
It really means a lot when someone does this:
Just sends a random text that they're thinking of me. I don't expect a lot. I know people are busy, and I tied easily so visits are hard but I do like them. But a text randomly just means more. Or even better, a card in the mail. Snail mail. It's more personable. like
My favorite social media account to follow is:
Aaron Cardoll. I think that's his name. He does the funny singing in public and other stunts.
The advice I would give to myself back at the beginning of this journey would be:
You're stronger than you think you are. And it's only for a small moment in the grand scheme of things.
Words of encouragement that I’d give to my fellow warriors are
Same advice... you're stronger than you think you are.
Follow my journey:

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