Sunday, January 18, 2015

Progress report

It's 2015, time for "new year's resolutions". My new year's resolution is to continue with my energy quest. As I am seven months into "Project Energy", I guess it's not really "new". But maybe continuing a project is better than starting something new. I've read that only 8% of people who make new year's resolutions actually reach their goals. Well here's to being in the 8% group!

Things have improved a lot since June. But I have also been putting a LOT into this project. Not only have I focused a ton on better nutrition and cooking (especially desserts) at home, I have been doing cardio and strength training regularly. I have been consistently meditating through piano practice, zentangle and painting. I have volunteered at my church. I've sorted and purged at lot of my "stuff". I've journaled. To help me stay focused I've developed tracking and reward systems: stickers on my calendar,





and little notebooks filled with number of reps for strength training or hours spent on the piano or hours spent drawing. It's easy to look back, now, and say wow things have really changed for the better. But day to day, it's hard to see those improvements so these tracking and reward systems are SO important for me. It's that motivation and incentive I need to keep going when it doesn't feel like I'm getting anywhere.

So if you remember, in June I had a pretty long list of unhealthy symptoms. In addition to general massive fatigue, I had developed an abscess for the first time in my life, I was suffering from extremely painful plantar fasciitis, my blood pressure was high and I was having pain in my shoulder that signaled the onset of a Lupus flare.

First, my blood pressure is normal again.


The first abscess healed with a course of antibiotics but I had two more lumps develop and one of those turned into an even more painful abscess. Another round of antibiotics cured that infection and once that one healed, I've since been infection free.

My plantar fasciitis has vastly improved. I went to see a new primary care doctor and she gave me a treatment plan: wear a foot brace to bed every night, tape my heel and arch for support, wear shoes ALL the time, stretch daily, and limit walking.


The treatment is working but I'm am still not free from pain. My case was severe so it's going to take the full 9 months to heal completely. But two days ago I took a 2 mile walk with my husband and the pain was manageable from beginning to end. (Normally I start out okay but the pain increases steadily until I stop.) That is HUGE progress. I can't tell you how amazing it is just to take a walk! For the the last seven months I have only been able to ride my bike for exercise so it's nice to know that soon I'll have a little variety in my workouts again.

My energy has jumped by leaps and bounds. It was slow at first and difficult to tell the difference from day to day but once I could tell, it was incredible, not just to think about the change but to feel it! Now, I rarely have an afternoon crash where I'm too exhausted to do anything and frustratingly unable to sleep either. At the beginning, when massive fatigue hit (usually around 2pm), I found that getting on the bike for an intense workout would then allow me to fall asleep for a restorative nap afterwards. As the months went on, I found that I could just push through the fatigue and not nap after my workout.

"'Change"
It was a this point that I decided to volunteer at my church. I had the idea that maybe if I did something small---not a job, just some volunteer work---that maybe in some way that would help me along in my quest for energy. For about three weeks, I was intensely involved with the children's choir. I prepared lessons for Sunday morning practices, figured out and then wrote down a piano accompaniment part. Practiced piano and sang to my accompaniment so I knew how I wanted the choir to sound. All in preparation for the World Communion Sunday performance. The experience had all the excitement and challenges of starting a new job. It was both exhilarating and exhausting at the same time. And afterwards I did notice an uptick in my overall energy level.

"Harmony"
In mid-November I finally had my first appointment with a new rheumatologist. I tried all the way back in June to make an appointment. Had I seen my new doctor then, my labs and exam results might have been different. This new rheumatologist is fresh out of a fellowship and consequently is current in best practice. She ran 27 tests. My primary care doctor ran 3 tests so in total I had 30 different tests! And all of them came back healthy! Based on my lab results, the office exam, and my self-report of pain level 0, my doctor says my Lupus is in "complete remission", and I have "no active signs of disease". This is the best news about my health I've had in five years!

"Peace"
I also learned or (maybe I was reminded) at this office visit that I have another auto-immune disease called Sjogren's (pronounced Show grins) Syndrome. It causes dry mouth and dry eyes. The medicine I take for Lupus is also effective for Sjogren's. This medicine, when taken long-term, has caused eye damage in some patients. My doctors watch for this and I have an eye exam annually. So in November, after my rheumatology appointment, I also had my eye exam. Great news! I have "perfect" eyes, according to my eye doctor. There has been no damage from either the medicine I take or dryness caused by Sjogren's! I even noticed a slight improvement in my sight from my two previous exams. On my last exam, I misread the O for a D. This time: no mistakes. I think it's the increased level of beta-carotene in my diet. I eat more carrots, pumpkin, and sweet potatoes now and I've read that beta-carotene aids in eye function. This is my own personal theory based on my research. None of my three new doctors mentioned diet as a tool for managing my diseases.

I feel quite pleased with the results of my efforts. My health is vastly improved and I have more energy now than possibly any time since I was diagnosed with Lupus. But I have more work to do. I have a long list of projects and goals I want to accomplish. But I most definitely feel more hopeful that I can actually achieve what I want to with these last 7 months of work as proof that focused effort does yield results. :)

"Reaching one's full potential"

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