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

Rain, Rainbows, and Rough Patches

Sorry for the radio silence the last few weeks. It's been an interesting ride. I’ve hit a brutal rough patch that I’m trying to claw my way out of. I’ve spent most of my conscious hours in bed, staring at the ceiling as my brain wanders. I start debating important philosophical questions like whether the magic in Harry Potter is genetically imbued or a force the characters wield. Or I lie there and transpose songs in my head. That's been the limit of my productivity.

Last week’s stress was an ongoing family situation that became more than I physically could tolerate. My body has become a delicate flower so any form of stress completely shuts me down physically. I needed to go to the ER mid-week, but like always, I didn’t go. It would have made a complicated situation more complicated. So I continued to lie in bed, use my canned oxygen, and listen to the birds chirp outside of my window. I finally prepared a folder for ER trips (test results, list of meds and diagnoses, doctor contact list, etc). Going to the ER with POTS or other complicated, rare illnesses is such a gamble and can be a huge waste of time. But I feel at least relieved that when I do need to go next time, I’ll roll in there totally prepared

I ultimately decided to step away from this family situation. It was making me physically worse and worse, and I knew the only way I could regain my strength was to take some time off. You can’t help others if you can’t help yourself and this is the reality of illness sometimes. It was the right choice.

Just when I thought I could get back on track, get back to exercising, and get back to trying to stick to my routine and goals, I got sick. I was really afraid of getting sick before I saw a pulmonologist since I’m having a hard time breathing even on my best days, but I’m getting through it.

I have big dreams that next week will see some improvement. 2015 is supposed to be my year so I’m just going to pretend it hasn’t started yet. Maybe by the end of February or March. There’s pressure internally and externally to maintain a positive attitude in the face of great obstacles. That pressure can be destructive (something I want to discuss at length another time), and I say this not just because I'm a die-hard pessimist. It’s difficult to keep a firm hold on positive thinking when you’re lying on your bathroom floor or can’t get out of bed every day for two weeks.

I keep a tenuous relationship with hope and optimism, but I do have unrelenting faith.  I'm not sure it's realistic to say that we should always hold onto optimism, especially during rough patches, but there's nothing wrong with having faith in a better tomorrow. I know that I’ll get back to being just couch-bound and less bed-ridden, I’ll get back to 7 minutes on my stationary bike, to walking outside with my trekking poles, to playing my keyboard.

We’re having the worst drought on record here in California, yet last week we had a good rainstorm. I didn’t get to see any rainbows, but my husband told me about the ones he saw. I’ll take it. It was a cleansing rain. We’re having record-high temperatures now, so we’re on the threshold of Spring. My daffodils have almost bloomed, the birds are returning to my yard, and it’s warm enough to sit outside in my yard again. Life is blooming all around me and I’m ready to bloom with it.

After the thunder and rain, life breaks free and takes form. There's a hope of renewal and faith that tomorrow can still be full of promise and surprise.

I got it together enough to leave my bed and sit outside in my yard today briefly and enjoy some tea, salt, and sunshine. So much win

I hope you are enjoying good days and the coming of Spring :)