Thursday, February 26, 2015

Learning to Breathe Again

I wrote in my last post that I was coming out of a rough patch. I’m still working my way out of it. I’m recovering from a sinus infection and things continue to get worse and worse with my family situation. But I’m working on getting my groove back. I’m working on getting back to my goal of posting at least once a week.

I’m working on showing up to appointments again too. I haven’t been to physical therapy in almost two months and the irony is, I have to rebuild my strength so I can go there and rebuild my strength. This week, I’ve been able to spend less time in bed and more time in my yard. The rest of the country is under a deep freeze and here in California, we’re worried that summer is coming way too soon. I want summer, and the brutal heat that comes with it, to take its sweet time.

I did manage to show up to an appointment a few weeks ago for pulmonary function testing. I mentioned before that I was going to do pulmonary function testing because I have this annoying problem of not being able to breathe. I’ve had difficulty breathing since the POTS started in 2011 but along with many of my other symptoms, it has worsened considerably over the last 10 months. I often wake up in the middle of the night or in the morning not breathing. I started taking Mestinon and that helps, but it hasn’t solved the problem. Thank god for this canned oxygen I bought on Amazon. It really does this trick, and especially kills the brutal chest pains that come with the difficulty breathing.

The test is called a spirometry test, and it proved, finally, that I am having trouble breathing. My neurologist suggested it to see if I maybe, possibly, probably have Myasthenia Gravis. I usually get a picture taken during tests so I can show what it looks like, but this test was over relatively quickly so you just have to imagine me sitting in my wheelchair, breathing hard into a tube, and trying to look fabulous.

I had to inhale and exhale quickly into a tube and try not to pass out. I had to do that a few times. The last one I did, I guess my brain started turning off. Once I stopped huffing my lungs out into the tube, I looked up to see my husband and the nurse wide-eyed and ready to catch me. They asked if I was ok, and I was fine. I wanted to say, “is that all you got? What’s next?” It wasn’t pleasant but it was over pretty quickly, and no one had to catch me. 

I got a copy of the results and faxed them to my neurologist. I didn’t expect him to make any comment or finally provide a diagnosis, and he didn’t. I get to add to my perennial growing list of specialists and see a pulmonologist now. I’ve always assumed the breathing problem was related to POTS and the maybe-probably-Myasthenia, but my primary doctor mentioned that perhaps it could be something else. That’s not something I’m ready to wrap my brain around.

The best part was when I looked at the results again a few weeks later and saw something I didn’t see before: A line that said “Patient’s lung age: 76.” I showed it to my husband and we had a good laugh. I guess I finally have proof that I really am young on the outside and old on the inside, like a really good fine wine or a Twinkie that’s been in a drawer for years.

It's nice to show up. The stress of the last few months has seriously affected my health and contributed to being bed-ridden for weeks. I’m relatively resilient but my body is a delicate flower. It doesn’t take much to make everything start shutting down, especially the breathing problems. I’m working on removing myself from stressful situations, staying positive, and trying to stay well. It feels selfish in some ways, but more than anything, I have to survive. I have to be able to get out of bed every day.

Being ill is a full time job that takes immense daily effort. You have to eat the right things, take the right pills at the right times, exercise enough but don’t overdo it, keep up with appointments and testing and communicating with doctors, managing symptoms, resting, and try to keep enough energy for loved ones and for yourself. Those weeks I was bedridden I got incredibly behind. I’ve written before how beneficial mindfulness is and I’m really cultivating that practice and I’ve been meditating almost every day, focusing on living in the present, breathing, and appreciating the gifts of life.

I can’t remember the last time I went out in public, but last weekend I convinced my husband to take me to the consignment store that is just down the street from where we live, one of my favorite local stores. I grabbed my walker and as soon as I walked in I saw it: a gorgeous, vintage baby grand piano. Our eyes met from across the room, and it was love. I parked the walker and never even looked at the rest of the store. I played that piano as long as I could until my energy ran out, and my wonderful husband waited patiently until I was done. I’ve been thinking about that piano every day since. I need to come up with $5k to buy it. That moment filled my heart with so much happiness that it washed away the trauma and stress of the last few weeks for awhile. It was glorious. Next time I go, I’m going to try to get a video of me playing it and I’ll share it here or on the Facebook page.

I had big plans for 2015, hoping I could navigate the chaos of life a little more, but it’s been a very rough ride so far. I still always have faith in a better tomorrow and believe that you have to wake up every day, stand strong (wearing your compression stockings), and face whatever may come. Life may knock you down and take your breath away, but remember all the times you were able to get up before that. You’ll get up again. You’ll get up every time.

Standing strong, with a little help

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