I had lunch with my rehabilitation hospital doctor, yesterday, for the first time since discharge. What a joyful reunion! We talked of some events during the two seasons (about 5 weeks total) I was in her care, as well as many changes that have taken place since I discharged in December of 2011. I know our relationship is unique, not common to a typical doctor/patient relationship. I am very blessed!
She reminded me of a comment one of the other doctors who saw me less than a month after my first three strokes and didn't expect recovery, said after my next three strokes, that I "seemed better" after six strokes than three! Obviously not in every area, and certainly new deficits after the new stroke, but overall, big picture. My Dr.'s comment yesterday was that medically that is totally illogical, not even possible, but does seem to be what happened. Only God!
I got to do a short walk for her without my cane. She got teary over my story and progress several times yesterday. The most fun thing was showing her my combat boots and telling her the story there. I finally was emotionally stable enough to share my near death experience with her. More tears! We talked about the thickened liquids (everything from water to juice to soda, even coffee (if I drank that) or hot tea, about the consistency of lumpy, semi-melted jello so that I didn't drown on thinner liquids), and the soft foods (pureed french toast is quite the memory!) diet I had been on for several weeks (once I was finally off NBM or "nothing by mouth" orders) and how amazing it was to be sitting there eating real food together!
One thing I was relieved to discover, nearly a year since I last ate one of my favorite foods, sushi, it was SO much easier to eat this time! While I still had to intentionally move all food to the right side of my mouth to attempt to chew last year, I found I automatically made this move without thinking before hand, this time. I also have significantly greater amount of sensation in my mouth, so it was greatly easier to cope with all the unique textures in sushi and my swallow reflex is much stronger so the rice wasn't as much of a choking hazard.
I also saw my neurologist again this week. It was a very good appointment (after an hour's delay in the waiting room prior to the start of the appointment). Two big things that came out of that appointment are a confirmation of the name of the condition I've faced with progressive severity ever since the hospital, Central Pain Syndrome. The Doctor and I have talked a lot about symptoms, consequences and possible plans for coping at past appointments, but this is the first it has been actually called by the name I had already researched and been calling it by for months.
The other was the confirmation to what I have simply referred to as "hives" ever since I got home from the hospital, is sort of like hives in that it seems to be an allergic reaction, likely triggered into activation by one or some of all the medications I received in the hospital (no idea what one or ones at this point), but not to any typical triggers, but now a reaction to light, specifically the sun, itself. So, almost my entire left (stroked) arm is photo-sensitive to some degree or another. One area of my right, just above and below the elbow joint, is prone to this reaction as well, but it seems to be not anywhere else on my body right now maybe my neck/face on a very low level).
I finally began to question my reactions when a friend explained her daughter's whole-body pretty severe photo-sensitivity to me and I realized that my hives always happened when I either had direct sun exposure or was using my bright reading light at bedtime. When riding in the car last week, we turned a corner onto a freeway on-ramp and when the sun came through the windshield and hit my left arm, the entire arm turn bright red and got itchy instantly. By the time we got up onto the freeway, I already had developed about half a dozen tiny, whit blisters that were raw and bleeding. This was the fastest and most direct reaction to the sun I had ever experienced, and thankfully not how swiftly most of my reactions have progressed!
Something else I still need to talk over with my endocrinologist about is my insistence that my hypoPARAthyroid issues are somehow stroke related. None of my doctors could see how, and yet I know my body too well to think the timing is just all coincidental. Doing research within the last couple of weeks, I found the potential link between repressed PTH (ParaThyroid Hormone) and Aspirin (I take 2, low dose, per day to keep my blood thin enough to not clot the surgery site of my artery). I brought this possibility up to my neurologist, and while we both agree that the Asprin therapy remains critical and is not optional for me, he does believe there is real merit to my theory that this is the cause of my PTH repression. I will talk over this idea with my endocrinologist at my next appointment in September.
I will be seeing my ENT next week fora one-year post-op appointment and to talk about ongoing pain and hearing concerns, likely nerve-related. If anything interesting comes from that appointment, I'll post then.
Today is the final day of my homeschool sale. I hope to post a fresh list of the few remaining items yet this afternoon, including a violin I never managed to get listed two weeks ago! Because it physically wasn't an option for me, my dad came and taped up and loaded 11 packages for me yesterday, then my mom drove me to get it all mailed. I pray that as our old school room gets scattered across the country, that the materials will bless many more families at least as much as we have been blessed by them. I have a measure of sadness (especially as I revisited all our old programs the past few weeks) that this chapter of our lives, more than a decade worth, is behind us, but I must admit to a significant level of relief now too. The sale has gone well, but been a terribly mentally taxing experience for me.
Please keep praying for answers for our 10-year-old as the new school year starts in just over 3 weeks and we still have no news about her enrollment for the upcoming school year! :( She and we are feeling rather anxious and long to rest in God's best plan. With just one at home, I think we could make it work next year with her still here, if we need to, and emotionally it would likely be a sweet season of bonding between mother and daughter, but academically, this would not be my first choice for the upcoming year because my defects are still so great. May God's will be clear, accompanied by peace in all hearts involved! Thank you also for praying for our 7-year-old who will be stepping into a public school classroom, as a student (2nd gradse), for the very first time on August 12. And for our oldest, who is entering high school this year, after one semester of public school experience.
Speaking of kids, we are delighted to celebrate the fact that they each have their own bedrooms now. Both cameras are broken at the moment, but if I figure out a way to post before and after pictures, I will. :) Thanks to help from both sets of grandparents, and friends Nancy and Sherry (and their teen girls) and Katie and Kathy, we have now cleaned, painted, sorted, sold, moved furniture into and fully transition from one bedroom for two boys to a refurbished old school room making a wonderful little "apartment" for our oldest to finally have his own space. Thank you to Rick and everyone involved in making this happen! J says he is sleeping more soundly than he ever has in his entire life. Little J. is enjoying sleeping on a top bunk and having a whole room to himself for the first time in his entire life.
I have to tell you, that while it has been LONG in coming (apparently your body CANNOT do it until it is healthy enough), I have finally lost my first post-stroke 10 pounds (out of a needed 50 to loose, so 40 left to go) over the past couple of months! I cannot even to begin to express what a huge battle this has been. Thank you, Lord!
A friend of mine recently commented on a long-term area of physical pain in her life, saying, "I guess we are all just getting old!" It hit me that God will give us the body, the abilities, to accomplish whatever He has planned for us. We don't need one ounce of greater giftedness or strength. We are truly given everything we ever need. If God isn't supplying whatever is needed to accomplish a given task, it isn't what He is calling me to in this season.
Quote of the day: Lindsey Van Nierkerk, via Facebook)
Your strength will equal your days. - Deuteronomy 33:25