Good health news!

February 5, 2013

I’m thrilled that for my 300th post on this blog, I’m reporting on some happy news. Sure, I rant about the frustrations and injustices of living with chronic illnesses, but I also think it’s important to celebrate and revel in the the good news whenever it comes our way.

Usually, a good medical appointment is when I’m told that I’m not getting worse. That tends to be the best that I hope for. So I’m still not sure how to interpret yesterday’s appointment where I was told I’m getting better. I think I’m still in shock.

Years of traditional medicine have failed me, so last summer I started seeing a naturopath. I did my own research first, figured out the treatment plan I wanted, then called around and did phone interviews with several people. I chose someone who was reasonably priced (though far from the cheapest), more local than many others, had similar treatment methods to the ones I wanted to pursue, and generally sounded like someone I’d want to work with. It took a while to research and find someone, but it seems to have been worth it.

The naturopath put me on a new diet and some supplements. The diet clearly started working right away. The daily nausea, cramping, gas, diarrhea, and constipation went away! I didn’t even realize just how bad they were until they were gone. Then I started to notice other changes. I had more energy. I didn’t unintentionally fall asleep in the middle of the day. I could take a short walk without needing a nap afterwards. I could do laundry and go grocery shopping in the same day (I’m still amazed by that one!) I could read a book and remember most of it by the time I reached the end, without having to reread the first chapters. These were all amazing improvements, but they were relatively small. Still, my naturopath felt that my gradual improvements were better than having big improvements that could backslide. That whole slow but steady thing. She felt I’d even be able to return to work in a year (this was said several months ago, so we’ll see….) She was positive, but I had my doubts.

Yesterday was the appointment that changed my attitude. My pulse was better. My ph balance was normal – and you chronic illness folks know how odd it is to be in the normal range of anything. My weight was good. My blood pressure was still too low, but most other measurements looked good. There were signs that my leaky gut had healed. What really shocked me was the part I should have seen myself. As she asked me probing questions about my recent health and abilities, it became clear that I’ve improved more than I’d realized. Yes, my memory is still a big problem, but it’s much better than it was. I hadn’t really grasped that before. My final IBS-type symptoms seem to have subsided, and I’m even having bowel movements twice a day. I hadn’t given that enough thought to realize it was happening, and what an incredible improvement it is. My pain is so much better that I only think of it when I’m having a flare. Sure, I still have too many flares, but they’re not as frequent as they were, and I do so much better in between. I knew that, but hadn’t put it in context with everything else, especially since I’m still restricting my activity to avoid what I know will cause pain. Then again, I’m walking up 2 flights of stairs at a time now – a record for me! My energy is a lot better. I knew I was doing more in a day, but she pointed out that I didn’t need “recovery days” anymore. I spent last Saturday with my mother. I left my house at 11am and got home at 6pm. A year ago, I might not have been able to do that, or I would have taken a nap at her house. And a year ago, I would have spent the entire next day at home, recovering, feeling lousy. I might have even needed more than one day of feeling lousy at home before I was “reocovered.” Instead, I felt good when I left her place! Ok, I wasn’t ready to do lots more activity, and I was tired, but I wasn’t really fatigued. And when I got home, I cooked dinner. Amazingly, I felt fine the next day! It was a quiet, laid back day because I already had plans to have a friend come over and play board games, but if he’d wanted to do some light activity, like take a short walk, I could have done that. Sure, I probably wouldn’t have wanted to walk through a large museum or do anything else like that, but I was able to spend a few alert hours with my friend, without needing to lay down to rest before or after. This is HUGE!

For the first time, I was feeling positive about my health prospects, and then my naturopath told me that we are ready to focus less on stopping the damage to my body and to focus more on repair. I almost jumped up with excitement. And in an even more concrete show of how good she feels about my progress, instead of booking our next appointment 3-4 weeks out as usual, she wanted to book it 6 weeks out! Ahhh!!!!!

I still have a long way to go, so I’m trying to be patient, something I’m really not good at. There is so much I want to do, but I’m not ready for any of it right now. It’s a good sign that I want to plan for the future, especially compared to a year ago when I couldn’t even see the possibilities. Still, I need to be realistic. I’ll probably never ride a bicycle, but maybe, just maybe, in a year or two I could go back to work, and date, and go out with friends, and travel, and…. Well, even doing half those things would be amazing. And for the first time in a long time, it feels like one day it might be possible.


Who I am vs. who I want to be

February 4, 2013

After I gained a lot of Prednisone weight a few years back, I would look in the mirror and the image I saw didn’t reconcile with the image I expected to see. The weight gain was so fast that my brain just couldn’t accept it. It was as if I was seeing a stranger in the mirror. That’s how I feel about my whole life right now.

I have had a lot of time to read lately. I’m not working, I can’t do a lot of activity, so I read. I read novels and historic literature, but I’ve also been reading a lot that falls into the self-improvement and personal development categories. I’ve been reading about personal finance, minimalism, and health. I’ve been thinking about which aspects of the things I read I’d like to adopt, and which I’d rather not. I’ve been thinking about my future, including where I’ll live and what career I’ll have if I can work again. Unfortunately, too much of what I want to do just doesn’t align with my capabilities.

In my mind, I’ve gotten rid of my car and I walk where I can, take public transportation, and ride a bike the rest of the time. I have a great career in a new field. I save money by getting rid of my house cleaner and fixing things myself instead of buying stuff to do it. I travel more, but on the cheap, including road trips and camping (assuming I get over my arachnophobia first.) I take up hobbies that are interesting, fun, social, and active, like sports teams (there’s a local lesbian/bi softball team I’d love to join), biking clubs, or hiking. I’d date more. I’d date a lot, actually. And there’s so much more.

Over the years, I’ve often wondered what my life would have been like if I’d never been sick. I know that in a lot of ways, I’d be a very different person. And I’ve had to accept that I’d never know for sure. This time feels different. I feel my health improving, but I just don’t know how far it will go. Maybe one day I’ll be able to clean my own bathtub without being in a ton of pain afterwards. I doubt I’ll ride a bike, though. I haven’t done that since I was 16, and the body parts that are stopping me are unlikely to improve. Maybe I could travel more, but I doubt I’ll ever be able to sleep in a tent without intense back pain. Starting a new career sounds nice, and I’ve been gathering information from friends and people online, but is it really possible? Will I ever have a full time job again?

I think about the person I want to be, and I just don’t know if I can ever get there. I want to so badly. I have insurance companies and government bureaucracies saying that I’m healthy enough to do these things, but if I were, I’d do them. Really. I know some people would rather just take the money and sit back, but that’s not who I am. I want to LIVE my life, not just watch it pass me by. I just wish I knew how to make it happen. If it can, that is. Because the person I see in the mirror isn’t who I really am. I want to be me.