The air quality is pretty bad here, I can’t imagine what it is like in California. This time of year the air here tends to be thick with humidity and still so the particulates from the Canadian wildfires hang in the haze. The weather forecasters keep predicting rain, which would wash some of the particulate out of the air, but we’ve been dry for quite a stretch.
Why is this relevant? Well, last week I missed posting because I was outside breathing the “fresh” air. I was camping north of the Twin Cities. Spent the first couple of days in a tent and then the next several in a trailer. The advantages of trailer camping include air conditioning and last week that made a world of difference.
I’ve never really trailer camped before so I don’t understand the ins and outs of hook-ups and reserve tanks. I do have a friend who, having just purchased a trailer, asked for my help getting it parked and set up. In return I’ll have access to a retreat in the summer – air conditioning included. Seems like a win-win to me!
The last time I was tent camping I ended up in the ER. I threw my back out, badly. This time I had enough help and support (and I didn’t have Orion with me) that I did fine. I even managed to be a real help to the people I was camping with. I also took care to go to bed when I was tired (much earlier than I would at home) instead of staying up half the night around the campfire. I made sure to stay hydrated. I didn’t “settle in” and stop moving.
Even so I had a nasty allergy episode. Someone decided to spread an allergen (they had been specifically asked not to use) around the ritual circle. This is a particulate that contains a volatile oil. In this environment, especially with the heavy, still air, the allergen doesn’t dissipate and instead continues to be reactivated and spread. It meant I had to miss out on much of the community activities and stay close to our campsite. It actually could have been life-threatening if I was less careful or less well equipped to handle my reaction.
The thing about accessibility is that accommodations were made and someone chose to ignore them. I see that a lot. People block aisles, drop into parking spots “for just a minute”, use public accessible bathrooms as employee changing rooms or (as in this case) think their experiences with disability are equal to everyone else so if it works for them that means it’s accessible. This behavior is nasty when done in ignorance and down right evil when it is done with self-righteous intention.
I have spent 50 years of my life with an awareness of access and disability. My sister had sever enough allergies growing up that we had to leave the city at this time of year because the air quality was too bad. That was before the advent of central air commonly available in housing. I’ve cooked around food issues (for friends and family, conference style events and as a personal chef). I’ve been pushing Orion around in a wheelchair for 25 years. I have had my own experiences with access issues as well.
If I’ve learned anything it’s that there is no one-size-fits-all. I know my son’s wheelchair is not as wide as standard and just because he can get somewhere does not mean it is “accessible”. I know that what we need in a parking spot is different than what a driver with a disability might need, or someone with a scooter. I know that distance isn’t the same issue for someone pushing Orion as it is for someone dealing with Fibromyalgia or a breathing disorder.
Many people, myself included, who deal with asthma will joke that “breathing is over rated”. It’s actually not, and that’s why people die of asthma. That’s why environmental controls on air quality are not just an inconvenience. That’s why setting off fires, that become forest fires, that impact air quality across states is criminal. That’s why I run my air conditioner all summer long, it filters the air. It makes it possible to breathe.
Orion turns 26 years old this week. I can’t even wrap my head around that. He’s approaching this birthday with typical enthusiasm. He’s excited to have a theme to use in his interactions with people, especially when he knows they’ll all wish him well. He’s excited about going out to a new restaurant he learned about from the guy who delivered his new wheelchair last month. In fact Orion invited the guy and his wife to his birthday dinner and still holds hope they’ll be there.
For me every one of Orion’s birthday’s is a little bittersweet. I love seeing him so happy. I love watching him shift and grow as he explores new ways of being in the world. I love that he doesn’t care at all about presents, he just wants attention and hugs. His upbeat attitude is contagious. I don’t know what I’d do without him.
But I also understand the limits of his independence, which become more obvious, more pronounced as he ages. He doesn’t have aspirations for a career, or even a job. He’s happy to help out when he’s asked and able, but even his day program hasn’t found a part-time volunteer placement for him in the last 2 years. His future possibilities get smaller and smaller with each passing year.
There’s also my part in all of it. I’m not sure that it’s still the best option for either of us to be “tied at the hip”. As his primary caregiver I’m very much aware of how little I’m able to do to move him forward. That’s been particularly obvious these last few months when our mobility has been additionally limited by my recovery from the surgery. Caregivers are hard to come by. Orion needs stimulation and he’s become too comfortable with the status quo to be motivated to move forward.
When Orion was born we were told that he’d probably be a vegetable and would be dead before he was 5 years old. I didn’t think that the evidence supported that conclusion then, and clearly rejecting that comment was a good decision. I have an enormous amount to be grateful for. Orion has been such a blessing in my life. He’s an inspiration, a delight, and a wonder.
Orion, may you continue to take joy in the world around you. May you continue to work at developing social interactions and the skills to build relationships. May you find ways to do the things you enjoy that are also productive and sustaining. May you always be open to new experiences, new people, and new possibilities for your future.
I have a complicated medical history, as does my son. The piece of the ACA that I was most excited about was the part where “pre-existing conditions” would still be covered when you changed insurance companies. The second most exciting piece was the elimination of the “lifetime cap”. If Orion had stayed on the same insurance he had from the day he was born he would have reached that lifetime cap long before he graduated from high school. In fact, he may have reached it before he started kindergarten!
My list of Doctors, grouped by specialty, looks like the yellow pages. I don’t have a geriatric specialist listed……yet. We see the ophthalmologist, the orthopedist, the allergist, the psychologist, the internist, the cardiologist, the GI specialist, the pulmonologist, and the surgeon at least once a year. Given that some of those specialties apply to both of us and that several of them involve ongoing appointments it is not unusual to average one lengthy doctors appointment a month. Add on the extra trip for lab work or radiology and we exceed that.
My schedule has always been complicated by unpredictable demands. Both Orion and I have been in physical therapy which can be anywhere from every other week to three times a week. I have weekly allergy shots. Orion’s occasional hospital visits can go anywhere from 3 days to 3 weeks (as can mine.) There are also meetings with the county for Orion’s funding, meetings with the program staff to set up goals, meetings with public health professionals and social workers. Then there are incidental things like taking the wheelchair in to get the brakes adjusted.
It’s difficult. As a single Mom holding down a full-time job isn’t in the cards for the long-term. Even when there’s been another adult in the household, the demands of my life interfere with the expectations of employment. My projects and volunteer jobs have also been disrupted by the demands of Orion’s health, and mine. Part of the reason I’m so good at delegating is because I can promise it will get done, but I can’t promise I’ll be there to do it. I’ve done a lot of supervision on the phone from the hospital. I’ve made a lot of phone calls on the way to or from a doctor’s office.
As a strong supporter of ANY kind of revision to the health care system I wasn’t too upset when the county letter came saying, “your insurance is up for review, you will not be insured after December 31. Please sign up for the ACA.” I was unhappy about the computer problems and frustrated with getting booted out of the system but I managed to make a successful application as of December 17th. The computer said I qualified for help from the state program – MNsure – and that they would contact me.
Ok. I figured I was good and would hear from them before the first of the year. Not so much. I started calling early in January. MNsure couldn’t even see the application. Apparently the federal computer wasn’t speaking to the state. About a month after my original application was accepted I found someone who said, “We have the application, you should receive a letter asking for proofs.” Now I’ve been insured by the state before and I know what that looks like so I asked what specifically they needed and faxed it in – to both the state and the county.
Funny thing I never, ever got a letter from the state asking for those proofs. Apparently the county and the state aren’t speaking to each other. One side has to actually scan the proofs into the computer and the other side has to analyze them for qualification. Both sides agreed they had received them, they just weren’t in the system. My proofs still weren’t in the system in February when I went to Pantheacon. They are in one system, but the other system doesn’t have access to them. They seem perfectly fine and you clearly are going to qualify but a determination hasn’t been made yet. Every week I call and every week I get some version of, “I don’t know what’s holding this up.”
In the middle of March, literally 3 months after my original application, I am finally given the news that the case is processed! I have been given an insurance affordability number. Theoretically they will send the options for insurance plans that I can choose from and there will be an amount listed that will be my monthly payment. None of that appears in the system. Isn’t that strange? In fact, this case that has an approval number issued in March, that I’ve been calling about every week, seems to have been closed in January!
MNsure asks me to go back to the ACA website and reapply. Now I’m looking at the March 31 deadline and again the system is slow. I have to establish a new file, new log in, new passwords and I am guessing at the taxes from 2013 (which I still haven’t done) rather than reading the form from 2012. Eventually it goes through and again a note saying I’ll hear from the state. (I still haven’t received anything in the mail from the state!) I’m following this case much more closely and 48 hours after I make the application on-line I’m on the phone again.
Yes they have the information from the federal system and yes they will need proofs. I asked them to refer to the original case, since the proofs are actually there already. I asked them to reference the old case in the notes for the new case. I asked them to especially make a note that the original date of application was December 17, 2013. I asked them to please expedite processing the new case. None of that is unreasonable. I’m trying to establish a case for them covering my medical costs for the last 3 months, but that’s not today’s battle.
I call again a few days later. Yes I have a case, yes it’s been approved but again there is no information about which plans and what co-pay. The second case has stalled out in exactly the same place the first one did. I have returned to limbo and I’m not happy about it. Apparently I am the hole in the computer program and it’s going to take an IT guy along with the case worker to hand push this thing through the system. Stupid computer. I asked to talk to IT weeks ago, but everyone assured me just reapplying would be sufficient.
As of April 1st Success! I have some kind of insurance approval that’s real. (I STILL haven’t gotten anything in the mail and I’m not convinced this isn’t a joke.) I haven’t got a plan, but I do have the insurance billing code from the state. So last week I ran to the pharmacy and to any doctor I could get in to see (and Orion’s appointments as well). I’ve got another week of appointment catch-up and the rest of the month to work on addressing a shoulder injury that will require some tests and physical therapy. All the things I didn’t dare do out-of-pocket. Hopefully by the end of the month I’ll actually have an insurance plan and be able to proceed with what the tests I took in December recommended. Most of those need prior authorization. We’ll see.