I haven't been able to log on and post for almost two and a half months, and as always, I want to apologize for the hiatus. I'm going to touch on a few points below to hopefully give you insight about whee I've been, what my current status is, and why I've been pretty inactive online lately.
1.) I stated the DesBio series therapy for Bartonella in March. The series is mean to be taken in full vials (see treatment tab for more into), but it made me herx so severely from the very start (my doctor had me start with 3 drops off one vial) that we had to cut my dose back to just one drop from a vial every 5 days. I hope to be able tot update more on how things have gone/are going on my treatment blog page, I just haven't been able to do it lately. This treatment and the subsequent herxes are the worst I've had to deal with so far, which proves to us that Bart is one of my biggest problems. Neurological symptoms have been on constant hyperdrive (hence not being able to log on long enough to write), psychiatric symptoms have been flaring, along with all over joint and muscle pain, that good ol' constant trigeminal neuralgia pain, burning feet, and more than I can count. We know we're doing the right treatment and that with this co-infection I'm currently in the "getting worse before getting better" place, but like Batman says, It's always darkest before the dawn."
2.) For the past few months, I've had increasingly troubling and painful GI/abdominal symptoms, in addition to the daily nausea I think most of us get. The past 6-8 weeks in particular, every time I try to eat or drink anything at all I'm within anywhere from 5-30 minutes I'm curled up in a ball with my heating pad, screaming because the abdominal pain is so bad. When it comes to physical pain, it takes a lot to get me to cry, so the fact that this reduces me to tears every single time is a big warning sign. We did find out I had a test come back positive for H. pylori, one infection that we also found 2 years ago but had gotten under control for a while, so we're going to be treating that and hopefully within the next 4-6 weeks e'll see some improvement as far as that goes. I'm also in the process of collecting samples to send in for a more comprehensive stool test that looks for just about every feasible bacteria, parasite, yeast, etc. that can be found in your gut, so I'll keep you posted if anything specific shows up on that.
3. We will be going back down to see my wonderful doctor sometime in the next few weeks, but instead of my regular appointment, we'll be staying down there in the hotel for a week so I can get various IVs over the course of several days--one of which is ultraviolet blood irradiation, and I'm hoping that even if it makes me herx like WHOA, we'll see significant improvement shortly after that and the other IVs I'll be having. More on this later, (probably in the treatment blog).
4. Okay, guys, honesty time. The main reason I haven't been able to really post since March (I felt horrible that I couldn't do a post for awareness month in May), outside of the fact that I've not been able to put paragraphs together or look at electronics much at all with what sometimes feels like a constant state of herx, is that I've still emotionally been having a rough time (see previous post) and even just connecting with others, much less composing an entire post, has been way out of the realm of possibility. But I felt I finally owed it to those of you who read this or who just end up here by searching online to at least give a quick update and explanation. I still have no doubt in my mind that God has already started the healing process in my body--I may not always agree with His timing, and I even tell Him that from time to time, but that's why He's God and I'm not. I'm not supposed to understand His timing and His reasons for everything. I'll tell you this, though...I can't wait until the day He calls me home and I'll be able to see the purpose for all this madness.
Above all, I've just been trying moment by moment to keep my head above water. On the days I'm physically able, I sit in bed and work on a jigsaw puzzle or do some coloring in the "adult coloring books" (meaning intricate designs, nothing risqué, I assure you) I have. Both are very soothing activities to me, and neither require electronics (EMFs are NOT out friends). I'm also constantly "writing" (or at least thinking up) new raps and I have one I was hoping to get a legit recording of to share in May, again for awareness month, but that time has come and gone and I wasn't able...but that's okay, because eventually I WILL be able, and just because May is designated Lyme Disease Awareness Month, I like to consider myself (and every other Lyme warrior) as living an awareness LIFE--we don't get a break from this illness, we aren't only sick in May, goodness knows ticks aren't only a danger in May, so whenever I'm able to record and post it will be the time it's meant to be shared. I'll tell you this much, though...I borrowed another beat from my man, Marshall (Eminem). If you know his "Like Toy Soldiers" song, you'll recognize it right away.
I hope every single one of you finds something to hold onto while taking this journey a moment-at-a-time. I personally believe He has plans in store for each and every one of us, and as I was talking to my husband last night, I told him that I just know God's ultimate plan for our lives has to be so much greater than we can even begin to imagine. I try to hold on to that to keep my focus where it needs to be--on Him and on thanking Him for the small daily blessings which are aplenty, even when I don't actively acknowledge them.
Keep fighting, friends. I know at times it can seem it's not worth it, but there's something so much greater in store for us than anything we could dream. Life really is a beautiful place when you realize what things are actually important (hint: it's not money, possessions, things, stuff, awards, etc.), it's just easy to lose sight of that when the days are sometimes harder than we think we can bear. But I've got news for all of you: if you're reading this, you've already beaten your personal record for "number of days alive," which means you've proven you have the ability to keep doing that each day, each hour, each minute. And that is a huge accomplishment in and of itself.