Both calcinosis and a typhoon look calm from above, but below, it’s a real shitshow.
Yesterday, I discovered the podcast service I had archived my podcast, so The Mighty Turtle podcast has moved. It will be in Apple Podcasts in a few days, but if you’d like to check out the reposted episode one, check it out HERE.
I’m still recovering from calcinosis from hell, which I address later in this post. I originally started this blog in 2012, but I had to move it and instead of reposting, I’m going through my posts from the past 11 years. My original blog posts were too long and all over the place. It’s taken graduate school and lots of therapy to help me understand how to tell a story without launching myself in an entirely different direction from my point. So instead of reposting them here, I will just chop them up and revise them and post them. If you’re into self-punishment or need help falling asleep, you can see some of my old posts Here.
About my calcinosis wound on my right leg; I feel like I have a handle on it, but I’ve been out of circulation for almost a year. It began with a lump on my right leg. I had it a while after I banged my shin on an open dishwasher door in 2018. Thanks to “The Rule of Ouch”- that’s where the sight of an injury or wound is repeatedly banged in the same place. When an impact happens over and over, antibodies are deployed by our immune system which in my case kills some healthy cells. Where do those dead cells go? If they are not broken down, they accumulate. The lump on my leg was an accumulation of cells in their final state, calcium.
Don’t let the name Calcinosis fool you. It has nothing to do with our calcium intake or diet. Calcium is the final state of living cells. I learned that from a podcast about aquamation, in addition to what doctors have told me.
This calcinosis wound from hell on my leg has been open since March of 2021. (Yes, I feel dizzy just thinking about it.) Luckily, I’ve had enough of these overwhelming wounds that would make the toughest person cry, tell all the secrets and beg for their mommy. So as angry as I was about having to sit still, I knew that these wounds would heal and I’d be out and about soon. And now, after pushing these calcium rocks out of my leg, they are gone, and my wound is finally closing. That’s right, I’ve been pushing rocks out of my leg for over fifteen months and counting.
Unfortunately, these rocks were ugly so I couldn’t make jewelry. (I saw something like that in the Beck episodes of Futurama.). It also meant not only did I have to avoid standing or walking, but I also have to elevate my leg constantly to keep the swelling down. I found the more active I was, the longer it took to close. I have reached the part of my recovery where my wound is almost closed, so I’m easing back into action, slowly.
I am hoping my lack of activity and weekly wound care appointments will continue to speed healing. Right now, I’m doing a lot of stretching yoga, with some great mobility exercises taught by Rachel Lando. She’s also the guest on the first episode of my podcast. She was going to cohost, but she’s super busy teaching fantastic yoga and she will definitely be back as a guest.
Right now, I’m doing 20 minutes at a time at my computer desk. It’s not impossible for me to work from bed, but it does a number on my back, so I’m not doing that. It does make me a million times slower.
Hello! So…someone from a private healthcare referral service received someone else’s death notification from the VA, then reached out to Angela*, my home occupational therapy provider, and told her I had died. The good news is, I’m not dead. Like all my posts, this is another story about my personal experience that I hope will make us all better health care advocates for ourselves and others.
The VA Did Not Fuck Up
Whenever I talk about a medical mistake, it’s usually assumed that it’s a mistake by Veterans Healthcare. The VA did set me up with OT, but they did not call and notify anyone that I was dead. The VA informed Bob, an employee of a government contractor that refers VA patients to private health care providers about a death. Bob mistakenly thought the decedent was me.
How Did I Get Here? Dancing.
During a hospital stay in December 2021, Madison, my in-patient social worker concluded that I needed ongoing home occupational therapy. Madison had to send that referral to another department to determine if I am entitled to home occupational therapy. Once approved, my referral was sent to Bob’s referral service to connect me with an OT provider.
The provider sent a patient treatment manager, an OT named Emma, to determine the course of my treatment. Emma submitted the treatment plan, then another OT named Angela performed my treatment. In my case, I was approved for 10 visits, with a treatment plan of two visits per week, to be reassessed by Emma after all 10 visits.
I was frustrated that I would have to be reassessed every five weeks to determine that I had not somehow been miraculously cured. Through the years, I’ve had different partners but it’s always the same dance. Before I knew the dance, most practitioners dismissed my request for any type of preventive therapy for scleroderma. Before it became the public norm to encourage people with disabilities due to chronic illness to stay active, any occupational therapy to slow down the progression was considered a waste of money. It took a long time for me to find medical providers who would help and encourage me to live a fulfilling life that met my standards.
More for Context
It’s not that I would need OT twice a week forever. My goal is always to get to a spot where I need fewer visits. Why do I think that’s helpful? That’s how it was done in the second half of the 1990s for me through the Madison Wisconsin Veterans Healthcare System. Ever hear the phrase, “If you’ve ever been to one VA hospital, you’ve been to only one VA hospital”? It’s fucking mind-numbing how each state can have different policies for its VA healthcare system.
When I lived in LaCrosse, Wisconsin, I was allowed weekly occupational therapy at a private facility. Back then it was called Fee Basis, and it was god damn spectacular.
When I returned to California in 1999, I presented Debbie, the occupational therapist at the San Diego VA, my treatment plan from the Madison VA hospital in Wisconsin. Debbie determined that the cost of local OT therapy was a waste of government funds to delay the inevitable. San Diego and Loma Linda VA Healthcare System felt the same way. Now, I’m at the West LA VA and after fighting for decades, I’ve got the OT I need. Well, I did until my case was closed thanks to the death fuck-up.
Treatment Interrupted
When any kind of treatment or therapy suddenly stops, it sets me back in function and reduces the odds of my fingers recovering as well as they could have. It’s a domino effect. I subconsciously guard an injured spot only to become aware of it after getting an additional impact wound because I zigged when I should’ve zagged. Those injuries are painful and protecting wounds by compensating in other ways leads to additional injuries and infections. Once this domino effect is in motion, it’s as easy to handle as nailing Jello to a tree.
How I Dropped Off the Radar This Time
It’s easy to fall between the cracks when care suddenly stops. Frustration is overwhelming and there’s always a chance of a visit from the Crippling Depression Fairy. It’s happened to me a lot.
Here’s what happened this time. A couple of Fridays ago, my OT therapist Angela, tested positive for COVID. (I tested negative BTW) She had no symptoms, but my visits had to be canceled until Angela was cleared. They couldn’t just send out another because I had been exposed to Covid. A week went by, so I reached out to her via text to see if she had been cleared. That’s how I discovered my death had been reported.
Now, I’m into the second week of no treatment. I have yet to learn if the referral dance I mentioned earlier must start again. It could be one week or two, maybe a month.
So who is to blame? Is it VA Healthcare? Or the companies paid to manage my case? It’s neither and it’s both. This cluster-fuckery is baked into the design of our shoestring healthcare infrastructure. Screw-ups remotely related to VA services make it easy for public opinion to favor private health care over government-funded healthcare like the VA. If funded properly, VA Healthcare could potentially make a good model for universal healthcare or Medicare for all. But we can’t have that. A small percentage of Americans need to collect dividends for their big pharma and health Insurance stock in addition to those “life saving” stock buybacks.
Ever notice that screw-ups at VA hospitals are all over the news, but rarely from our private hospitals? That’s because private health insurance and private hospitals have bigger public relations budgets.
If government-funded healthcare like VA healthcare looks shitty all the time, and private insurance overshadows their medical and administrative fuck ups with celebrity spokespeople, sound design, puppies, and talks about bare-minimum services like insurance companies are benevolent and care, of course, health insurance-funded private medical systems look better. Health insurance is the biggest racket since self-check-out at the supermarket. Self-service checkout makes as much sense as paying someone else to gleefully paint their fence.
It’s simple. If we don’t fund government services like veterans’ healthcare, they don’t work. Unelected douche canoes like Grover Norquist want the government to fail and benefit their own personal gain. They actually brag about it. I don’t want someone fixing my car who hates cars. Things like this inhibit progress. Could you imagine if the stagecoach industry blocked progress in automobiles the way fossil fuel interests have tried to kill electric cars? Sure, it would create jobs for horse shit removal, but it still would stink.
Good Government Is Possible
In that poorly named but well-crafted BBB bill, there were some great changes for all American citizens regarding healthcare infrastructure, especially for veterans. But of course, a small majority in the Senate removed that. Elected officials who are supported by pharma and health insurance companies can’t make government-funded healthcare look like a good option to voters.
What if VA hospitals were not 50 years behind in improvements? What if there was an updated system for medicare that made getting treatment less financially painful? What if veterans everywhere got better healthcare? No way. If government services like Veterans Healthcare and Medicare are properly funded, how would Americans continue to remain divided thus continuing to vote against our own best interests?
You Have The Power to Help Change This
Next time you think about thanking me for my service, don’t. Thank me by voting for representatives who will legislate for veterans in good faith by funding veterans services over privatization. It will work. I’m exhausted, and it would be great if I didn’t have to fight for simple treatments that when denied kneecap my quality of life and cost taxpayers more money in the long run. If you want government services to work properly, especially for veterans, stop trying to make government so small it can be drowned. The only difference between the quality of Kaiser Permanente and VA Healthcare is their PR budgets.
NOTES AND REFERENCES
*The real names of professionals in healthcare in all of my posts have been changed for privacy and to assert the humanity of those who work as public servants and private company employees.
