Sunday, July 23, 2023

Five Years After Brain Surgery

This past year of recovery had some really neat highs and some tough lows. I was able to achieve some fun and hardfought recovery moments: dance fitness class, riding a bike (tricycle), walking 2 miles on the beach in Cannon Beach, jumping, and hiking in Palm Springs. I also experienced an ever so slight improvement in my vision field on my annual vision testing last May - that was an exhilarating moment! Unfortunately, my vision improvement was short lived: in December I was sick with the flu, and the accompanying high fever led to retina damage in my right eye. After a few weeks of testing I was diagnosed with Acute Macular Neuroretinopathy in my right eye. This is completely unrelated to any of my existing vision issues, and just really unfortunate - and rare: 1 in one million cases a year are reported.The damage caused a new spot of missing vision in my right eye’s vision field; while the retina damage continues to resolve, the missing vision spot does not and is likely permanent. The Lord gives, and the Lord takes away, blessed be the name of the Lord!

This past year also bought 2 more diagnoses: premature menopause and stage 3 adrenal fatigue (which triggered the premature menopause). Turns out, brain injury brains cannot handle stress like pre-brain injury brains: Learning how to be disabled, mothering four (spirited + lively) children, and a pandemic pushed my adrenals past what they could handle with my new injured brain and semi-broken body. I’m getting treatment for both conditions, and we are making changes in our family life to make increased room for preserving mom. My goal is to stay out of a wheelchair before my 50th birthday! I’m getting to bed before midnight most nights now, I’m back at the YMCA several days a week, and 3 of the 4 kids are headed to public school in the fall (more on that in a later blog post).
Lastly, this past year also brought 4 separate injuries to my left foot and ankle, and 1 injury to my right leg - I’ve got it on my to-do list to establish care with a podiatrist and see what we can do to preserve and protect my left lower limb, while I also work at getting stronger to better prevent falls, bruises, and breaks. The Lord gives, and the Lord takes away, blessed be the name of the Lord!

To end on a positive note, I think we may have finally found some relief for my constant central nerve pain. In keeping with my “I’ll try anything once approach”, I’ve found a medication that moderately decreases the pain on high pain days, does not make me drowsy, and does not need to be taken consistently.. I dont love taking a medication, but I do love being able to function for my family! The Lord gives, and the Lord takes away, blessed be the name of the Lord!

This 5 year mark feels like a good time to stop doing annual updates. I no longer feel that I’m “recovering” as much as just learning the ins-and-outs of disabled/brain injury life for the rest of my days. God has answered every one of my prayers these past 5 years: He doesn’t always give the answer I want, but He does answer...and for that, God is good!

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