Adam’s New Wheels, a Secret, and Some Bad News
This is, by far, the most personal and revealing post about myself so far. I've been agonizing over parts of it and rewriting it over and over. Writers, you'll know what I mean. Anyway, here it goes. Remember, I enjoy discussion (as long as it is civil), so don't hold back if you have questions.
Check out my new wheels!
You might be having the same reaction that I had when my therapist suggested a wheelchair. Seems like a step backward, right? I was getting pretty good at getting around with my stick. Turns out that my therapist is a genius.
When I go out with the stick, I can manage pretty well but I get tired. I have to consciously keep my balance, continually making adjustments to compensate for the balance disorder. It’s exhausting, like trying to stand on one leg for an entire day. I don’t have as much energy to be the awesome me that I usually am in social situations.
With the wheels, however, I don’t have to worry about keeping my balance. If I get dizzy, I can just sit there until it passes and it’s likely that no one will even notice. I've been to two big social events with the wheels and it was incredible. I had the energy to be myself. And it's a conversation starter if I'm careful to diffuse any awkwardness. Counterintuitive, but this wheelchair has given me more freedom.
It’s also great exercise. One of my meds makes me gain weight, and I can’t walk fast enough on the treadmill to get my heart rate up. That’s not a problem with the wheels. Driving a wheelchair is hard work! Going up and down my driveway a few times is all it takes to work up a sweat. In four weeks I’ve lost six pounds.
Experiencing the world from a wheelchair is an interesting experience. I’ll share more of what I’m learning about that later.
Now, I'm going to tell you a secret. It's something that I haven't told very many people, not because I'm embarrassed, but because some people have ignorant reactions and I don't always feel like educating the world one person at a time. I'm revealing it now for two reasons. First, I hope I can dispel some of the stigma concerning these diseases. Second, the next part of the story won't make much sense without you knowing the whole deal.
I was diagnosed with HIV in 1999. I started treatment in 2000. (Incidentally, I was HIV+ when I met my husband almost 15 years ago. He is regularly tested and does not have HIV. Let that sink in. We'll talk later.) After a lot of trial and error at the beginning, I have been on a stable drug regimen and the HIV infection is not causing me any problems. To clarify: I do not have AIDS. I have HIV infection, which is different (more on that, when I feel like it). In fact, according to my last blood test, my immune system is better than one would expect if I did not have HIV. The medicines are doing their job but are very potent and have some nasty side effects. I seem to be very sensitive to side effects, because I get the rarest side effects from nearly every medication I take. With my current regimen, my most common side effects are nausea and stomach cramps, but each of them can also cause dizziness in some people.
I also have two mental illnesses, anxiety and depression. (Many people don’t really understand anxiety and depression as mental illnesses. Maybe I’ll write about that later. For now, know that it’s not just being nervous and sad sometimes. These are medical conditions that may require treatment.) The HIV meds can create some crazy chemical imbalances that exacerbate these illnesses. I've been taking the same HIV treatment regimen for at least 10 years and I didn't get this crazy dizziness until two years ago, so I doubt that the dizzy is caused by my HIV meds. My anxiety and depression have increased dramatically, but that seems reasonable considering that I can't stand up without the world spinning around. We’ve adjusted my meds for anxiety and depression, and those are being managed better now. Of course, those meds may also cause dizziness, but I was dizzy before I started taking them, so I doubt they are the cause of my balance disorder.
To summarize, I have HIV, anxiety, depression, migraines, and some weird balance disorder. The cause of the balance disorder is unknown. I take medication for all of these, and suffer through some side effects.
THE BAD NEWS
If it wasn't bad enough already, right?
Until recently, I was fortunate to have Long Term Disability insurance from my employer. So, I was able to continue to get 60% of my pay when I got sick and was unable to work. This is private insurance, not government assistance. The insurance company helped me apply for and get Social Security disability insurance (SSI). When I qualified for SSI, they reduced the amount of my benefit payment by the amount of my SSI payment. I was still getting 60% of what I was making before I became disabled when you combined the two income sources. It was a hit to our budget, but the 60% really helped us not fall off the edge when I was suddenly no longer able to work. Then my employer laid me off, but I retained the private LTD insurance.
The insurance company reviewed my case after two years to determine if I still met the criteria for benefits. They considered migraines, HIV, and the mental illnesses to be pre-existing conditions for the purpose of this LTD insurance because I was being treated for them before I started working for my previous employer. The doctors still don't know what is causing me to be dizzy and lose my balance and they have said we will probably never know. So, there is no neurological evidence that can prove that this dizziness or vertigo or whatever they want to call it is not being caused by any of those pre-existing conditions (and the meds I take for them). Therefore, they denied my claim. I appealed, but they denied me again. They found a nice escape hatch and left me hanging out to dry.
This is a big financial blow for us, and we’re having to take some drastic measures to survive the sudden drop in income. Basically, my income was cut in half. Then, it was cut in half again. There are bills to pay. Mouths to feed. Dogs to take to the vet. I am so thankful for my wonderful husband who has supported me and makes my well-being a top priority. I would've gone crazy if not for him. (love you!)
I had a complete meltdown when I got the second, and final, denial letter. Through this whole experience I have tried my best to avoid a meltdown because I was worried that if I started crying I would never stop. This was the last straw and the tears and sobbing began. It felt good to cry. I needed this cry. I haven't broken down crying for a while, even though I’ve felt like it many times. I should have done it sooner. I felt cleansed and released and able to begin to think of solutions instead of fearing the obstacles.
Everything will work out. It always does. My husband is my perfect partner, and we have yet to meet an obstacle that we can't overcome when we work together. We usually even end up better off than we were before. I just need to remind myself of that while we go through the struggle.
Works on this page credited to Adam Brown are licensed under a Creative Commons Attribution 4.0 International License.