Adios Pablo!

Some big news here this week. We've sold Pablo (my wheelchair van.) At first I tried to sell it privately, but what worked out best for us was just to sell it back to the company we bought it from in the first place.

It's still in our possession, but won't be soon. WOW! That's a very big deal. 

We've had Pablo for four years. We bought it just before the pandemic hit in January 2020. He was incredibly expensive. It's insane how much mobility tools are when you have to pay for them yourself. There are many programs to help families of disabled children, but not many for adults.

I'm relieved and ready to say "adios" to my good friend. Having it there in my driveway is a constant reminder of all the things I couldn't do and my reliance on others. Even though I occasionally drive it now. It's also expensive to maintain. It's not being used for its intended purpose. I'd rather pass it on to someone who can REALLY use it.

We have another car. A Kia Soul that has been a fantastic friend. Then my mother has a large Jeep Grand Cherokee. For now we're not looking to buy a second car. I am however on the hunt for a new bicycle! 

Transitions

My new transportation cards

I don't feel like I'm "transitioning" into my life of being on disability and not working. Not at all. Instead I feel like I've been distracted from really coming to terms with anything. Part of that has been from being so busy with my mother moving to town from overseas and the other part has been caused by having such a complicated illness.

When you are healthy one day and paralyzed the next, or have a clear diagnosis or are undergoing serious treatment for a condition complete with walks and ribbons, you know what to expect. Your prognosis is clear. But even though I have something serious, it's rare enough that it's not clear at all.

I have accepted that I likely won't find a magical treatment that will put me "back to normal" (at least my normal). I've also accepted that I will probably continue to have degenerative, progressive muscle weakness. But what I'm not sure about is if that will always keep me from working?

Right now what's keeping me from working isn't my body at all, but the dizziness, fatigue and foggy headedness. Both my ENT and the neurologist think at least some of this is from migraine. The pink glasses helped and I ordered a pair of blue light blocking prescription glasses yesterday hoping that helps even more. 

My new specs - Yes, I'm a hipster

The Topamax DID NOT HELP! It made my dizziness so much worse that I had to just go to bed. It also made my headache much worse. Ugh. After three days of that BS I just stopped taking it and messaged my neurologist.

I think what will help me transition is:

• Some time to myself
• Applying for SSDI
• Talking to the new neurologist who knows more about myopathy
• Time

Homeostasis - The New "Normal"

The first two days at my new job went great. My employer saw me use my rollator "Meg" and gently asked if I "Had an accident, or if this is a long term need." I disclosed that I have an autoimmune disease and right now it's a tool that I need. He followed up by asking if there's any accommodations or modifications that I would need to better to do my job. I told him not that I knew of, but I'd let him know if something comes up. 

Fortunately my job is very "cerebral" and sedentary. So I honestly don't think my muscle weakness, muscle fatigue and joint pain will be an issue. And I meant it when I said I'd let him know if that changes. Speaking up for myself is a new skill that I've quickly mastered. 

Thumbs up and ready for work!

I have a large, beautiful office that is very comfortable as well as a full support staff to help me in my work. So far there are a few things I need to work around. Like my chair will need more back support, but I can bring pillows in to fix that. Luckily Meg fits in and out of my office and the doors are pretty easy to open. 

My new office

My job also required much less typing and paperwork than I had expected. My hands are pretty excited about that. The hours still concern me, but I love what I do and that helps. For now my schedule is Monday and Tuesday from 8AM to 6:30PM. A long day, but I can do it. Long term that will turn into Monday through Thursday the same hours. MUCH longer week, but again, I'm feeling confident.

I'm hoping that my new rheumatologist can come up with something that helps my muscle fatigue and weakness. I didn't use Meg once I was settled in at work and instead walked the long hall to my office and back. I won't do that again.

The Lyrica and Cymbalta are both proving to be hugely helpful. The Cymbalta definitely helped to stabilize my mood and both are helping with the neuropathy and back pain. I'm so grateful to finally be on something that's giving me some relief!