Time to Act in Minnesota

According to the Arc Minnesota “the 2% provider tax on health care services is the main source of funding for the Health Care Access Fund, which contributes nearly $450 million to Medical Assistance in Minnesota. The provider tax is scheduled to expire or “sunset” at the end of 2019, which would leave a hole of more than $900 million in our state budget – placing health & human services and education funding at risk.”

This is a very real risk for me and others with disabilities who depend on Medical Assistance to help cover medical costs, that in my case aren’t covered by my family’s private health insurance. Medical Assistance and the waiver program that I’m on cover the expense for needed personal care support staff. Taking $900 million from the Minnesota state budget and not having a plan to fill that gap is short-sighted. Even me as a 20-year-old can SEE that it’s short-sighted!

My medical costs and need for care are not going to go away when funding gets decreased or goes away. It just means that those of us with disabilities and our families will struggle more than we already do. There will be very real people with disabilities who will end up going without needed care or will start getting denials for needed equipment. My Republican state senator will say not to worry, that I will get everything I need. But, it’s not true. You don’t get the medical care, support staff, or needed medical equipment you need, when there isn’t money to pay for it. I depend on Medical Assistance services and medical care to live in my community and do what I do to make the world a better place.

So, to legislators who are not in support of continuing the provider tax, think of your constituents with disabilities and their families. Think of me – would you say no to my power wheelchair? My support staff? My surgery to correct my messed up toes? My deep brain stimulation surgeries? My communication device or hearing aids? My physical, occupational and speech therapies over the years. My care costs a lot. Don’t cut funding for this care unless you address how you’re cutting the costs of medical care in this country. Don’t leave me hanging.

Contact your Minnesota state senators and tell them to NOT let the sun set on the provider tax in Minnesota! Not sure who represents you? Enter your address into this Legislative District Finder to find the contact information for your State Senator.

#DontLetTheSunset

5/26/2019 Update

Relieved that the Provider Tax was agreed to as part of the final budget negotiations with Governor Walz, Senate and House! Consistent and stable funding is so important for me and others with disabilities. Thanks to Governor Walz for his support of the Provider Tax! And thanks to my Representative Ami Wazlawik for supporting issues that matter to me and make a positive difference in my life and others with disabilities.

Justin in wheelchair, dad holding Justin's footJustin sitting on Mom's lap in chair next to hospital bedSmiling Justin laying on bed with casts on each leg propped up on pillows

Quick update from ME

Hey there, I’m BACK! Stopped taking the heavy-duty pain meds so have been able to get up to my computer again.

What did I miss most?

Writing. I love to crank the music and write. I’m working on a new novel now about a young woman who has cerebral palsy and her friend who is a boy, not a boyfriend. It’s still early, so working on the characters.

What do I remember?

First week – NOTHING. It was a blur. My parents told me I threw up a bunch in the hospital. No memory of it. I remember the drive home and that it was painful! I don’t remember that it was so painful that mom ended up calling the triage nurse several times.

It’s a thing with me and my CP – I get into what I think of it as my pain loop – I have pain. Then my muscles go into high tone and tighten up. This causes more pain. Which causes more high tone tight muscles. Which causes more pain. Which causes even more high tone tight muscles. And repeat. Repeat. Repeat.

At the end of the week, I went to the doctor. My incisions were looking good but then they ended up having to put the cast back around my entire foot. Ever have a cast? Remember the itching?

Second week – Pain has been decreasing this week and I’ve been able to sit up at my computer longer. Yay! I just take naproxen and acetaminophen now. And medical marijuana at night.

Highlight of this past week – I took my mom to see Avengers: Endgame for Mother’s Day. It was amazing! So, is my mom. Pictures are from our family’s trips to Wyoming and California in 2013.

Justin with his mom and brother with mountains behind

Day 10

Guest post by Mom (Kris Schulze)

Justin had his followup visit with his surgeon on Friday and all is looking good. We ended up removing part of the cast to be able to see the incision. So, now he has a cast over his entire foot since it was the only way to recast the part covering the big toe without redoing the entire cast. This cast will need to be replaced in 3 weeks. He will have light sedation for that as it’s the only way to hold his leg and foot still and steady enough to be able to recast. We’re still looking at the end of June for removing the pins which will be a heavier sedation procedure.

All in all, it’s been a pretty exhausting week for all of us. All transfers and lifting require 2 caregivers now. Pain meds in the middle of the night means 2 of us up – dad to hold Justin up and me to give him meds and drinks of water. The past couple nights he’s had some longer stretches of sleep between needing meds or readjusting legs and pillows (waking every 3-4 hours instead of every 1-2 hours).

We’re trying to cut back on the heavier duty pain meds during the day so that Justin has the energy to do a bit more of the things he loves to do – like read all of the well wishes on Facebook and his blog (thanks all for those!), finish reading a book, and catch up on his favorite YouTube videos (John and Hank Green, Daily Show, John Oliver, and music videos). This first week, though, time upright was mainly spent eating meals and towards the end of the week was able to spend a bit of time on his computer. Highlight of the week was watching AFC Wimbledon’s last match – they stayed up in the 3rd tier (Justin made me add this sentence)! Most of his time this week though was spent surrounded and propped up by pillows either sleeping or watching movies. Justin sitting in wheelchair with casts on legsHoping that this next week, Justin will have less pain, more energy and be clear-headed enough to write his own blogpost and have more time at his computer! The computer is where he is most independent – where he can read, watch what he wants, write and connect with the world. And, really hoping that we all get more sleep!

Innovative idea for the week – after Justin scraped the inside of his knee with his cast and multiple knuckle scrapes for his dad and me – his dad cut off the toes of his old Ankle Foot Orthotic (AFO) socks to cover up the rough cast. Justin now has scrape-free casts.Justin sitting in wheelchair by computer

 

 

Recovering

Written by Mom (Kris Schulze)

Justin’s surgery on Friday went well. Both of his big toes have been straightened out – 3 pins in his left toe and cut the tendons, 2 in his right and didn’t cut the tendons. The doctor wants to try to keep the pins in until the end of June. He had a lot of nausea on Friday after surgery – never know if it’s the anesthesia or combination of pain killers. He was able to eat Saturday morning, pain management was going better, and he was ready to get back to his comfy queen-sized bed and out of the skinny hospital bed – so were on our way home by midday.

IMG_20190426_073141294
Picture of Justin before surgery

It was a rough homecoming. The ride home proved very painful – the pain meds weren’t helping. It’s kind of a vicious cycle – when he’s in pain, his high tone kicks in, which means his muscles in his feet were tightening causing even more pain. Finally after a couple calls to the triage nurse and adding some of his medical marijuana to the mix, he finally was able to get more comfortable.

Today is going a little better than yesterday and we’re getting a better handle on the pain management. We’re up every couple hours through the night alternating pain meds. He’s resting more comfortably today although still is at around 8 for pain levels. Some of the more challenging things are figuring out new ways of doing things from transfers to positioning and figuring out how to make him as comfortable as possible. Thank goodness we have lots and lots of pillows in this house!

Thanks to all of you for holding Justin and our family in your hearts. Justin loves your messages of love and support. Please keep sending extra strength and healing vibes! This is going to be a long couple of months – taking them one day at a time…Photo of X-rays showing pins through right and left big toes

8 things to know

Here are 8 things to know when you go into surgery:

  1. Don’t eat or drink after the hospital tells you. For me – that means no food or drink after 10:30 pm on Thursday.
  2. My caregiving team (i.e. mom and dad) should bring a book because they have to wait while I’m in surgery. Mom, what a great time to read the draft of the book I wrote!
  3. Be clear with the doctors, make sure my parents and I understand what’s happening, and ask questions (watch To Err is Human). Use Google Live Transcribe so that I can better understand what’s being said because I have AN (auditory neuropathy & hearing loss)
  4. Plan on watching mindless tv shows or videos because you’re going to be really groggy and pain medicated. Hope that the hospital has the channels that Premier League football and Twins are on.
  5. Bring comfy easy-to-put-on clothes along because when you are discharged, you are going to want to get the f**k out. It’s less painful for me if I have easy-to-put-on clothes because I need other people to get me dressed because I have cerebral palsy (CP).
  6. If you’re staying overnight, don’t think you’ll sleep well because if you are either a light sleeper or a mom, you won’t get any sleep. Especially if you’re like me and have sleep apnea, the beepy thing beeps a lot all night long. And nurses come in and check your pulse, blood pressure, IV’s, etc. My dad is pretty good at sleeping just about anywhere.
  7. Hope that you are not in the hospital for more than two days. The last surgeries I had for putting in my DBS (deep brain stimulation), I was there for a week. That was more than long enough for me!
  8. Get a gallon of coffee because if your parents/guardians/friends/partners are anything like my mom, they are going to need lots of coffee. Thanks to Ronald McDonald House for helping take care of the caregivers and having good coffee for my mom and a nice place for my dad to get breaks, too.

I will have one more post by Wednesday at the latest, going more in-depth about the surgery the doctor will be performing on the big toes and then my mom is going to do a guest post after the surgery. The photos shown are of me in the hospital when I had my DBS surgeries 4 and 5 years ago (yes, did this one twice + one time to have the first one removed!)

Another song for my hospital playlist: Brave by Sara Bareilles

“Maybe there’s a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is”

Dad holding Justin in hospital bed

Tearing at the seams

Perfect paradise, tearing at the seams.

– Imagine Dragons

One of my favorite bands, Imagine Dragons, has this line in Bad Liar. When the song came out, I was in a place of pain and this helped me forget. This was actually last fall and the pain has been at a steady 6 with jumps to 9 out of 10 for so long. Just to recap –have seen multiple specialists over the past 5 months figuring out what to do.

My surgery is now two weeks away on April 26th. I’ll have two months of pins in both of my big toes and recovery with lots of lying around in bed, watching Netflix, Amazon Prime and On Demand. For the next couple weeks, I’ll be putting together my playlist for the hospital – the music that makes me feel strong!

I am going to have my mom post as soon as she can after my surgery to let everyone know how I’m doing. Justin smiling with concert crowd behind

So look me in the eyes
Tell me what you see
Perfect paradise
Tearing at the seams
I wish I could escape it
I don’t want to fake it
I wish I could erase it
Make your heart believe

-Bad Liar by Imagine Dragons

 Bad Liar on YouTube How awesome that it’s captioned!

Previous posts about toe-mageddon

The Interrupters up close

Amazing concert on Wednesday at the Varsity Theater! Can’t even describe how awesome this concert was! The pictures say it all – this band is energizing and exciting. Justin and dad in front of theater marquis for sold out Interrupters April 3After the last song, the band threw t-shirts, drumsticks, guitar picks, and sheet music out to the crowd. The lead singer, Aimee, saw me and brought me a hat! And I got a hug – after she asked if it was okay to give me a hug! It’s always good to ask!

You’ll never believe this – the manager noticed us and asked if we’d like passes to meet the band after the concert. I still can’t believe it!

We hung out while the crowd left. And then got to meet the band – who by the way are incredibly nice and cool! They didn’t know it, but it’s going to be a rough several months for me after my foot surgery in 3 weeks. This concert and meeting them, is going to make it easier to go through the rough times. Thanks Aimee, Kevin, Justin and Jesse! Never underestimate the impact you have on people who are going through hard times.

Fight like a title holder 
Stand like a champion
Live like a warrior
And never let ’em break you down

Title Holder YouTube video

Finally, the Varsity Theater in Minneapolis was very accessible for me. After getting our tickets sorted out, we went to the reserved spot that was right up front to the left of the stage. We didn’t check out the accessible bathroom so can’t report on that. My chair elevates so I raised it up to standing height and it was amazing to be so close to the stage. The security guys were awesome – gave us water and earplugs and were really nice.

Interrupters on stage

Can’t wait to see the Interrupters again. Maybe Duluth in July??? Hopefully am recovered from surgery by then!

Find out more about the Interrupters and their concert tour on the Interrupters website.

Justin and Kris in concert crowd