It's been 6 months since my last update, and if you've been following my journey you've probably noticed that my updates have been fewer and farther between. This is a good thing! The better I feel, the less I write (apparently).
The new year always has a significant meaning to each person, usually based on circumstances. We hope that the new year will bring new or renewed opportunities, jobs, relationships, finances, friendships, health, etc... For me, for the last 5 years, I have hoped each new year that that would be the year that I became "well."
A year in review:
2017 was big for my well-being. I remember last February when Tyler and I were going to Germany, I was scared that it would be too hard on me. For the first time in years, it wasn't. I definitely still had rough days, but I was really, really amazed that I was able to handle all of the traveling/time changes/walking/exploring without too much pain or fatigue, and without paying for it later. I was finally starting to really feel like things were changing. That spring, as Lyme is known to do, it showed it's ugly side and I had some frightening old symptoms reappear, as well as some frightening new symptoms. My doctor wanted me to get another brain MRI, but since I'd had one fairly recently, we skipped that... But he insisted that we pull out the big guns and begin IV therapy.
I had been avoiding IV treatment for the last 3 years. I didn't want to pay for it and I didn't want to go through it. And to my surprise, it's been the IV treatment that kicked me into an entirely different level of well-being.
June through September of last year I was going in weekly to have an IV placed, then I would do IV treatments at home for the next couple of days, and I would remove the IV at the end of the 3rd day so that I would have 4 days off before doing the same thing again the following week (yes -- because many have asked me --this means I order needles, syringes, IV bags, IV tubing, and IV medications through a specialty compounding pharmacy, and I have learned to set it all up and hook myself up for infusions. No, I don't stick myself with the needle (!!!), which is I why I go in to the clinic to have the IV placed... I just mix the meds and prepare the tubing, hook myself up to the tubing, etc at home). We had to take a break in October, because my body pretty much started rejecting being poked every week (my veins had enough and were blowing every time they were accessed, it was harder and harder to find a usable vein, etc), and because my white blood cell count had dropped too low again. IV treatment had been working so well though, that my doctor insisted on beginning again as soon as my white blood cell counts were back up, and that it would be through the use of a PICC line, opposed to weekly IV placements.
For those that are unfamiliar, a PICC line is a Peripherally Inserted Central Catheter... It's a form of IV access that can be in place for an extended period of time (months to years), whereas peripheral IVs can only stay in place for a few days at a time. I'd been having peripheral IVs for months, which meant starting a new IV and poking to find a usable vein every week, and that's why my veins said "enough!" A PICC line is placed during a small procedure, using ultrasound and X-ray. The catheter is inserted through a vein in your upper arm, and then the catheter is guided toward the heart using ultrasound. They use X-ray to make sure it's placed properly. The picture below shows it better than I can describe. Clearly, the end of the catheter stays outside of your arm, which is where it can be accessed to hook up for treatments.
If there was anything I had been avoiding at all cost, it was a PICC line. It seemed way too invasive and expensive (for the record, insurance wouldn't touch it for me, because they knew it was for the treatment of Lyme disease, and the CDC and IDSA don't support treating Lyme disease beyond 28 DAYS and therefore the regulations in this country are just that. The letter of decline that I received informed me of how science shows that treatment doesn't work...). Anywho, I seriously didn't want a PICC line, because it felt like a defeat. It felt like a visible sign that I was sick, and I didn't want that. In fact, I was feeling so much better!
I had a PICC line placed on November 1. I was able to get on board since I'd been responding so well to IV treatment, but also because my doctor told me that as soon as we're done with IV antibiotics, we'd begin IV "clean up," which sounds refreshing. This means that once we think I'm in remission, we'll do some major detoxing to rid of all the crap we've been putting into my system for the last few years, and to clean up all the crap that the bacteria themselves leave behind. I guess I was like a little kid being told "if you get your flu shot, you'll get a lollipop afterwards!" The thought of the "treatment after the treatment" had me running to the facility to get the PICC placed. That was something good that was easier to focus on.
So, I've continued doing IV treatments at home through my PICC line since November 1. We switched medications in December, to something that would fight on the intracellular level. I have an appointment tomorrow, at which we'll likely switch to our 3rd and (hopefully) final IV med, which will act as a cyst-buster. If you recall, Lyme disease bacteria morph and hide when they sense invasion. They create and hide in cysts, which most treatment doesn't get to. Thus, the cyst-busting medications.
I have been feeling so well for so many months. I just have some small symptoms left over. I feel like I am so close to remission I can taste it. I'm praying that one month of a cyst-busting agent will do it, and that after that we'll be done with treatment. The next phase would be the "after treatment treatment," which I don't know a whole lot about yet, but I know it's major detoxing. We have a lot of months left of IV therapy, but I'm hoping the harsh IV treatments are coming to an end soon and we'll be on to clean-up mode!
There are so many changes coming for me and Tyler in 2018... One being a move to Hawaii later this year, and we're praying that another is remission for me. I can feel it, it's coming, and I begin 2018 hopeful and ready for change.
Please send up positive thoughts, prayers, whatever you can offer for continued healing! Love and light to you all!
Side note, and this is coming from a positive place: I find it hugely ironic that for all the years I felt horrible, no one took me seriously because it's an illness that you can't see. Now, I'm feeling the best I've felt in years, but I have an IV sticking out of my arm, and when people see it they lose their minds. It's something that is a clear indicator that something is wrong with me, and people treat me completely differently when they see it. It's been a really interesting lesson.
So please remember this (I know this is often said, but hear it again): We are all fighting battles. Some are visible and most are invisible to others. Treat everyone with kindness, because you have no idea what battles they are fighting. Just love.
