Okay, so I have to update on my current doctor situation. A short synopsis of where we have been the past several months (as far as the Lyme goes, that is):
I've seen a good integrative medicine specialist who is the first dr who was courageous enough to officially give me the Lyme dx. However with that doctor I was/am not getting any Lyme-specific treatment. Now, I am 100% behind all of the restorative supplements he has me taking because I believe all of them are absolutely essential to rebuilding my body's systems so they will eventually function like they're supposed to. However I also had the very strong gut feeling that I need to find a dr who will address the Lyme and co and treat it specifically.
So a few months ago I made an appointment with an excellent dr in Nashville (5 hours away) but he didn't have an opening until April of next year. So I then contacted a dr in Pennsylvania (also 5 hours away), and he had an opening November 13. So that's what was on our books for the past couple of weeks--the November 13th appt. Which still is a little ways away but closer than April!
Anyway, the past couple of weeks have been rough, like I mentioned the other night. But yesterday my mom got word from a friend who lives in Brooklyn who has been on the dr search for us and who gave us the name of a great LLMD in NYC who had an opening SEPTEMBER 9TH!! So yes, we are driving the 10+ hours one-way (so 20+ round trip driving time) to NYC in just under 2 weeks!! Which means that hopefully in 2 weeks or so I will have been able to already start on actual Lyme treatment along with my supplements I've been taking for 3 months. That's so exciting! Just knowing that we have a time frame for when we will be able to start the treatment that will eventually (yeah, probably years, but still) give me my life back....so stoked for that!!
But I have to share what a God thing this is...
This friend we have in Brooklyn....my mom and I actually became great friends with this woman and her 3 kids when we were all staying at the Ronald McDonald House in Baltimore at the same time in 2004. At the time I was receiving treatment in the eating disorders program at Johns Hopkins Hospital and after a while I was able to stay at the RMH with my mom evenings/nights/weekends. Anyway, we became so incredibly close with this family--and then once we got back here to KY we stayed in contact for a while but then lost numbers and emails, etc.
Fast forward to about 1.5-2 years ago when we were first able to reconnect with them after so long. Even with that, our talking has been sporadic....BUT when mom told her what was going on with me, she immediately set out to help us find a dr who was highly recommended AND who could get me in quickly. WHO WOULD'VE THOUGHT that this family we connected with in Baltimore 9.5 years ago, under not-so-great circumstances for either of our families would be the instrumental factor in me getting an appointment with an LLMD in New York 9.5 years down the road?!
If that's not an absolute GOD thing, I don't know what is!!
I just had to share the good news and the total God-awesomeness that happened the past couple of days. As I always say, God takes care of His children.
Okay, I know, I'm a slacker. Not sure how I expect to build a readership when I go an entire month without posting but that's something I'm working on.
Basically, the reason I haven't posted is because electronics have been really affecting me negatively and sending symptoms into overdrive so I just haven't been online much (at least not long enough to write a post on here). But there are a few things I want to write while I'm able to tolerate looking at my phone for a bit.
Quick update on me:
August 5 we got my official Western Blot and CD-57 results back. We have known/suspected Lyme and Co for a while so we had already self-diagnosed and I already had the clinical dx, these tests just confirmed it. So the next step is to find a doc who will treat the Lyme. The doc I've been seeing has gotten me about as far as he can with supplements/restorative nutrients, and I'll be sticking with everything he's doing because I fully believe it's necessary, but I need a doc who will specifically treat the Lyme AS WELL AS the baseline nutrition.
I currently have calls in to 3 different docs--one appt pending for April, one for November, and waiting to hear on the third. Slow process but God's teaching me patience.
Anyway, this past week has been a rough one. I think lots of it had to do with the full moon on Tuesday (today is Saturday) which left me unable to get out of bed Monday, Tuesday, and most of Wednesday. The worst part if it though is the absolutely debilitating nausea that has made itself my companion. I think sometimes being stuck in bed just with lots of pain is easier for me than dealing with a little pain but severe nausea, because with nausea I know I have to eat to maintain my weight and nutrition but the very thought of eating anything (solid or liquid) seems impossible and makes the nausea worse.
So my best friend right now is my blender--I've managed to have some smoothies on hand on days when nausea is bad and I can get those down easier than anything else. I always add a scoop of Vega One protein powder which helps with muscle health and nutrition maintenance a bit. (Love love love my Vega One powder!)
I keep going every day (and I keep going mentally even if physically I can't move) knowing that this is the storm--this is the war--and it will continue to be a long, hard battle, just like it has been for years--BUT I have confidence that God is going to bring so much glory to His name through the testimony I will have (which I already have but I'm sure will be even more able to glorify Him when I've come through!) and I try so hard to keep that as my focus. Because no matter what I'm going through, no matter how hard this gets, I fully believe my purpose on earth is ultimately win souls for Him--and if I have to go through something like this Lyme war to have the greatest impact I can, well, I'm in this for the long haul.
Thank You, Father, for continuing to bless me with life and for letting me remember nothing happens in vain.
P.S. I will not be attending any types of concerts for a very long time. Rog got tickets for his birthday to see Huey Lewis at the Paramount tonight and I went with him because I thought if we took my wheelchair (which we did) and if I wore sunglasses and put in earplugs (which I did) I would maybe tolerate it all right. Not the case. The speaker sounds felt like they were rattling my bones and magnified my nausea by about 500%, which it's what's keeping me awake at 12:37am to post this blog. On the plus side, though, Rog had such a wonderful time it was tee-totally worth it just for him.