I'm flashin' it back to last week ya'all! It's been an exhausting few weeks, actually...both physically and mentally.
Some of you may know that I recently had a check-up at Lymestop in Idaho last week. I'm going to rewind a little further than that. Sunday, which was Fathers day, hit me like a truck. Those of you with Lyme know that it's normal for days like this to come out of nowhere. However, at the time, I attributed it to an event that I had the previous Friday - an "Old Hollywood Auction". I had put in about 19 hours of overtime that week, and some the week before as well. Although Auctions are my favorite to plan, they are also among the most time consuming, laborious, stressful and physically exhausting. If you know me at all, you know that after I finish any event, I can hardly walk from my car in the garage, to the inside of our house, because I'm in so much pain. And it usually takes me at least several days to recoup back to my "normal," if not an entire week. So when I had a hard time moving or doing anything on Sunday, it wasn't much of a surprise. Still, I was disappointed to let my family down, yet again, by not contributing to the Father's Day fun.
As the week wore on, I actually started to feel even worse, which isn't necessarily normal for me - typically I improve a teeny bit each day. Although, this week wasn't a normal one. We were in the car a LOT - driving from Western Washington to Eastern, over to Idaho, and reversed. We didn't have our usual toddler reprieve with daycare like we get at home, and our daughter was an EXTRA handful all week. I loved the extra family time, but full time mom duty is so incredibly hard on me. The weather was crappy most of the time, too, so we were stuck indoors a lot more than I had hoped, which added to the little kid madness.
It took me until this last Tuesday, over a week later, for me to get through a day without feeling like all I wanted to do was lay in bed. The lethargy I experience is very difficult to describe. It's as though I'm in a Disney movie where the wicked witch is out to get me with her sleeping potion and she has me set up on a constant IV drip; I can literally feel it coursing through my veins and taking over my whole body. Even the act of lifting my arm up to take a sip of water is tough to accomplish. That may seem like an exaggeration, but I can assure you it's not. I've also been experiencing flu-like symptoms at times, and just the mere act of picking up a few toys off the floor has me out of breathe. My disabilities have rendered me out of shape, but not that out of shape! And as a cherry on top, my immune system is giving me the big middle finger by letting in a head-cold, my joints have been throbbing like crazy, and my neck is so knotted up I can hardly turn my head.
Unlike the Disney movies, this princess doesn't have the luxury of laying around all day, just waiting for a kiss from the prince - I've got a busy 2 year old to take care of! And traveling makes my job harder, as she clings to me even more than usual. This time around, we had a couple of high activity days that really did me in. The day of my appointment, we were forced to find something to do for 4+ hours as we waited to check in to the place we stayed. By the time we hit the library, the playground, the frozen yogurt shop, and the grocery store, I could hardly stand. We ate out a few times, which is another thing that may seem so simple, but is something I usually dread because restaurant seating (and making sure the toddler doesn't run-amok) causes me so much pain. On our last day in the area, we really wanted our daughter to experience the fun park within the city we met (Spokane). Granted this park is a decent size, but all it took was walking half the length of it and back for me to more than exceed my limit.
All the pain was normal, but I still couldn't figure out why I was so fatigued and lethargic. It took until halfway through the week for me to have a revelation. For one - Mother Nature caught me by surprise by gifting me a week early, which always affects my energy levels. But I happened to be perusing through one of my Lyme Facebook groups and saw some people posting about the current moon and how hard this one was hitting them. Did you know that a Full Moon has quite a negative affect on how we Lymies feel? Sounds kind of American Warewolfy, but I know from experience that it's true! There are several theories as to why this would be - the most common, in short, that the bugs (spirochetes, parasites) reproduce every four weeks during the moon's full cycle, due to gravitational pull, tidal change etc. If you're interesting in learning more, google "lyme (or parasites) and full moon" and you'll find some very enthralling reads. Here's one of them:
https://consciousreminder.com/2018/01/02/full-moons-effects-health-no-coincidence-science/
So anyway - I have had a lot of things working against my physical health, which has made for a VERY difficult few weeks.
Now, onto the mental - and to fill all of you in who have wondered about how my Lymestop appointment went. Let me preface it by saying that I've been on and off the fence about this doctor over the last 4 years. I've also read some mixed reviews from others. The first time I went, back in 2015, I had 6 appointments back-to-back, and felt AWFUL afterwards, for about 4 weeks or so. If you know Lyme, you know this is a good sign. My body was detoxing and getting rid of all the bad stuff. I had a few check-ups over the next few months - and aside from my worst symptom (my pain) - everything else seemed to be getting much better. In fact, I considered myself maybe 80% better? Shortly after that, I got pregnant. At that point, it was tough to tell if my symptoms were from the pregnancy, or from my disease. But after a rough 1st trimester, I felt almost better than ever - thanks to those pregnancy hormones (which almost makes me want to get pregnant again just for that relief)! ;)
Of course after I had our daughter, my pain came back worse than ever. I started seeing a new Lyme doctor to figure things out, and then shit hit the fan as he uncovered (and attempted to treat) so many more things going on in my body. As most of you know, Lyme treatment is trial and error. Every person has different symptoms and reacts to treatments diversely. It's been a very expensive, very traumatic 18 months of a lot of trial, and way too much error. I was feeling like we weren't really getting anywhere. So the idea came to me to give Lymestop another shot. In fact, my doctor was even on board with giving it another try.
So my husband and I both took a week off of work to make the trip to Idaho and see what Dr. S. could do. I anticipated a similar experience from my 1st round of treatments - that I would feel really crappy for a long while but (hopefully) better after that. I prepared my workplace for a possibility of being out even longer than a week, and battled feelings of apprehension every day about how I would take care of my daughter when feeling as close to death as I did the first time around.
If you have read my previous Lymestop blogs, or are familiar with Dr. S., you know he has a bedside manner that could use a lot of work. He comes across as rude, unfriendly and, to be completely honest, a total dick. I was taken aback the first time we saw him, but now it's just something I've gotten used to, however offensive it is. With barely as much as a hello, he asked me to stand next to his desk to start the testing. What he does to diagnosis and treat his patients is muscle testing, otherwise known as applied kinesiology. If you don't know what it is - look it up - I stand by this method as the only thing that's really helped me make any progress through this journey. Anyway, he took all of 3 minutes to test me...and he kept saying that he couldn't find anything - no viruses, no infections, no parasites...nothing. Um...what?!?!
Now you may be thinking, "hooray, that's awesome news!" But I've been around the block, and I know what makes a good doctor and what doesn't. Dr. W. who I currently see, also does muscle testing. But instead of taking 3 minutes to diagnose, he takes 3 hours - really spends the time with his patients to figure things out. And the fact that, not all that long ago, he found plenty wrong with me, makes me think that last week's diagnosis was a bunch of bollocks. (Yes, I've been reading a lot of British crime novels lately) ;)
I had an unwanted flashback during those few seconds of the doctor saying, "I'm sorry, I can't find what would be causing your symptoms". It took me back to all those years of knowing there absolutely WAS something wrong with me as I continued to get a "clear bill of health" from doctor after doctor. I couldn't help but feel like I just lost years of progress to be back in a state of total confusion and utter hopelessness.
Which leads me to the mental and emotional difficulties I've been dealing with as of late. First of all, I was upset that we drove all that way, spent the money, took time out of work, etc. to get such a ridiculous answer in the matter of a few minutes. Words cannot describe how tired I am of wasting time and money, and of having my expectations dashed time after endless time! I was so upset that I didn't talk about it for the next 3 days, to anyone. Even now, I don't feel much like talking about it out loud. For some strange reason, I also feel embarrassed, in a way. I've been telling everyone in my life about the treatment, and my expectations of getting sick and then hopefully better. But now I have to tell everyone that none of that is happening. That two of my appointments were cancelled because the doctor couldn't "come up with" any findings.
Well, I take that back, he did mention that he thinks I have CIRS - Chronic Inflammatory Response Syndrome. If you haven't heard of that, below is a link with more info; there is a ton of information online about it. It can be caused by many things, but primarily exposure to mold (or from a tick bite). The first two years of our lives in Olympia, we lived in a condo that was covered in black mold (unbeknownst to us at the time) and the house we lived in previous to that in Spokane also had mold in the basement. Mold and Lyme do not mix well because our immune systems are so shot - and it's safe to say that many people who have Lyme also have a mold illness...especially here on the wet west coast. So I don't doubt at all this is something else my diseased body has been gifted with.
Anyway, I've been through an emotional roller-coaster since that appointment. First off, I felt so EMPTY. You know when you cry so much that eventually you just don't have any more tears to give, like your body used up all of it's tear supply for the day (or week, or month?) For a few days I almost felt like a robot because my emotions were so depleted.
Then, I had thoughts of giving up altogether. I honestly would never do this (so don't go calling a therapist on me, mom), especially now that I have a daughter, but driving home I couldn't help but think how much easier it would be to just completely give up on life. Coasting along the beautiful Washington gorge, I even had (very) fleeting thoughts on "how" I would do it. Seriously, the ideas freaked me out, and I never ever would, but this is how badly I want this part of my life to be over and for everything to just go away. I have these thoughts every now and then, and it's extremely sad, but not surprising, that so many with Lyme resort to leaving the world.
I've dealt with some anger this week, too, and now I'm going through stages of major sadness. Most of the time I do my very best to keep it together. I've let a few tears slip at work, but I've left my armor up otherwise. I don't necessarily want my daughter to see me cry when I get back from work either, and my husband is just as tired of it all as I am, so I try to forget about the whole thing at home as well. But there's that small window in between, on my 5pm drive home, that I've been finding myself the most vulnerable. There have been a couple days of full out blubbering in my car. Other drivers have probably thought me to be completely insane. If only they knew!
Every second of every day is so incredibly difficult! Even those close to me don't know the half of it. Most people in my daily life don't even know that I'm dealing with such a horrible disease, because I look so "normal". Even those that do know, often forget, I think, because again, I look normal. It's consumed my life, and my husband's life. It's affected our marriage. It's affected my relationships at work. My kid doesn't know it yet, but it's affecting her life in ways, too. I feel so alone and so effing tired of all of this bullshit. I'm so unhappy and miserable. I'm not living - I'm merely existing. And if it weren't for my family - especially my daughter - I wouldn't think it was worth it anymore. I keep on pushing. Not for me, but for her. Although it's weeks like this that are making it so incredibly difficult to keep going.
I don't really know how to move forward. I'm making new plans with my current Lyme doctor, in hopes that one day our trials will no longer be errors, and I have another appointment with him on Monday. He is just as frustrated as I am, and wants me to get better almost as much as I do. But I don't know how much longer we can afford to keep seeing him. I've contemplated traveling to Mexico for, what I hear, is treatment unlike anything we have in the states. But again - it's not affordable for us - and just like all Lyme treatments, does not guarantee a fix. I've lost count of the times that I've said I'm so close to losing all hope. I don't want to think this way, but I'm honestly starting to feel like this may just be the way my life is going to be until I die. I pray that it's not true. For my sake, but especially for my husband and daughter's. At this point, we need a freakin' miracle.
