Saturday, November 7, 2015

November Update

With all the excitement around Leni, I realized I haven't done much in terms of an update lately. The rest of the year is going to be busy with appointments and some traveling, so I thought now would be a good time to let you all know how things are going and what's coming up in Bokatopia.

The past few weeks we have seen a slight improvement! Praise God! We discovered that I've been having pretty low blood sugars quite often. Some of my neurological symptoms that I had developed seem to be correlated to my sugars, so we are hopeful that as we get those stabilized, my walking and balance will improve.

That being said, I do have a follow-up appointment with my neurologist next week. When I first saw her, we decided to start with a bunch of blood work to investigate my balance issues and walking problems. So far, it has come back mostly normal. At the time she had said if the blood work was normal we may need to do some more invasive testing to get the bottom of my neuro symptoms; however, we did not know about the blood sugar issues at that time. Please be praying for wisdom as I see her this week. We definitely don't want to do any invasive testing that is not necessary, but at the same time, we do not want to miss something just because we *think* we have a connection between my sugars and these symptoms. 

I also have a geneticist appointment this week. I'll be honest...we're really not sure this is worth our time...When my primary thought it would be a good idea for me to see a geneticist, he just gave me a general referral to see someone local. While it would be nice if this doctor is familiar with cases like me and has some actual knowledge of possible connections, I'm not getting my hopes up. We are still waiting on a referral to a specialist for a specific genetic condition that I might have, so that may be the more useful appointment, but in the mean time, we're giving it a go! I've never seen this type of doctor before, so this will be new to me...anyone gone to a geneticist and want to share your experience??

The next appointment on the schedule is the one I am most excited/hopeful for. I recently was put in touch with another mast cell disease patient in this area. We met up for coffee and it was really cool to meet someone else who knows what this condition is like! Anyway, she gave me the name of her allergist who has been really great in helping her manage her symptoms. I called and made an appointment, and I'm actually looking forward to this one! Please be praying that this doctor really does understand what is going on and is willing and able to help. While we are doing our best right now, I desperately need doctors who are not just willing to help but are actually ABLE to. 

Next up is one of my two favorite holidays of the year: THANKSGIVING!!! (My other favorite is Passover in case you were wondering.) Even though last year I couldn't eat anything, it's still my favorite. I love that it's all about being with family and just enjoying each other's company without the pressure of buying gifts. Plus, it's great that we have 2 incredible families that we actually enjoy spending time with! AND I will hopefully be able to eat some sweet potato or something small and soft this year, so that's even more to be thankful for!! 

After Thanksgiving, Nick and I are heading to visit my grandma for a few days. She turned 98 yesterday (HAPPY BIRTHDAY, GRANDMA!!!), and she is an incredible woman. It's been almost a year since we've seen her, so despite the fact that it's a good bit of a drive (over Thanksgiving no less...) we're doing it...road tripping with the Bokas!!

Last appointment in November is the endocrinologist. This is another appointment I'm not so sure will be worth my time...but for the sake of being a compliant patient, I'm going...haha! When we discovered I was having low blood sugars, my doctor got me a prescription for a glucose meter but also wanted me to see an endocrinologist. I was just scheduled through the generic scheduling portal, and while I did try to emphasize that, if possible, it would be good if I could see someone who is familiar with unusual cases, not sure what's going to happen. Oh well, hopefully by that point, we'll have made some progress anyway.

In December we will be heading back out to Minnesota for my 6 month follow-up with my specialist. I can't believe I'm typing this because it seems like just yesterday that it was June and we were out there. Maybe we'll get some decent weather this time...2 snow filled visits and 1 downpour-for-the-2-days-we-were-there visit.

We'll be spending Christmas Eve in Ohio with Nick's family, then heading to VA to see my family for about a week. Anyone in VA who wants to meet up sometime while we're there, let me know! 

So that's what's coming up in the last bit of 2015! Lots of doctors, family, regular life, and bits of spontaneity when we can =) Thank you for joining us in life and lifting us up in prayer. There are days when that is all that pulls me through. Know that while I may not be physically healed (yet), God has been doing some major work on my heart. 

Your prayers are not going unanswered!

Yes, my physical health is not perfect (although we are more hopeful recently) but I am healing spiritually. Struggles and fears and frustrations that I have dealt with for years are being replaced by peace, trusting, and expecting God to move without expectations or stipulations of HOW He "should" do it. 

Just because prayers of finding the right doctor or relief from symptoms do not appear to be answered doesn't mean they haven't been. While I still may be searching for the right doctor to treat my physical weaknesses, God has used numerous people to speak into my life spiritually and bring healing in those areas of my life. I still may be counting weeks between ER "date nights" and Epi pens and dealing with daily, persistent physical symptoms, but spiritually I'm learning how to let peace rule my life instead of fear. I'm learning to trust instead of worry. I'm learning to let go of my plans because nothing I come up with can top what God has in store.


I would take these heart changes over physical healing any day. This body is temporary, I'll get a new one someday and I can hold onto that promise. God doing work in my heart, THAT'S what's important. I'd rather be throwing up everyday and in the ER every week but be joyful, at peace, and trusting God, than to be the healthiest person in the world with no hope or encouragement or knowledge that God's in control of my life.

That being said, please don't stop praying for healing =P Because God's not doing working on me yet, physically or spiritually! 

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