You know you've become a horrible blogger when you have to read your previous post, just to remind yourself what you last wrote about. This is only my 5th entry since the little has been born a year ago; I feel guilty about my lack of commitment, but I have also come to terms that this is just how life is now. During the odd times that I get a free moment to myself - I find that I'm more prone to relaxing in Epsom salt and water with a good book (or cleaning up toys and folding loads of laundry) than pulling out my computer to compile all my thoughts and emotions in writing. Hopefully my few subscribers and readers are okay with that. ;)
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So here we are, at the end of another year. 2017 has been the first full year of my child's life. It also marks an incredibly swift 10 years since I first met my hubby, 5 years that we have lived in Olympia, 12 years that I have lived with Lyme disease, and about 52,594.92 hours that I have endured this life-changing and debilitating pain.
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The year has gone by in a blip - I'm amazed at how much my daughter has changed over the course of it. But it has also had moments that seemed to last forever. Each stage of parenting has gotten harder for us, and we've had some streaks of time where we both felt like giving up. A lot of it has to do with health, or lack thereof, as it's been a year of constant sickness in our household. I think we only had about 3 weeks of total health for little B. She has endured everything from several bad stomach bugs, to respiratory flus, pink eye, and an obscene amount of colds and ear infections. The kid is an excellent sharer too - most of these illnesses were passed onto her mommy (and daddy sometimes) as well. Probably the only time I'll ever wish she was selfish and would just keep things for herself!
Earlier this month we ALL THREE had one of the worst and longest stomach viruses I've ever encountered, all at the same time. I know there are plenty of parents out there that can relate to how difficult it is to take care of a pukey kid when you're constantly running to the bathroom yourself - pure misery! The virus also made my pain much worse, and there were times I could barely get off the couch. It lasted over a week for me, and just short of it for them. There were moments in that week that brought me back to the only other time in my life where I thought, "I literally cannot do this," and that's when I was pushing in the delivery room.
At the same time, we were also dealing with a double ear infection that lasted almost 2 months. It took four rounds of antibiotics, and many other remedies that didn't work, until we were finally able to get tubes placed in her ears just before Christmas, which was the best present we could have asked for! They say ear infections are harder on the parents than the kids, which is probably true, although we could tell that she was truly in pain almost all the time. Up until a week ago, our norm was constant screaming, crying, fits on the floor, and finding that there was absolutely nothing that could keep our baby happy. She consistently wanted me to hold her, but as soon as I picked her up, she would thrash her body around and throw herself backwards out of my arms. It was so tough on my body! And a horrible thing to feel so helpless when you're baby is in pain.
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Sleep has obviously been a past-time in our household. With the lack of health comes a little one who would not sleep unless it was on one of us, no matter how hard we tried otherwise. And she would often wake up and cry for an entire hour or more in the middle of the night, flailing around in our arms. It's a lot different than when she was a mere six pounds - 25 pounds gets heavy REAL quick. And she didn't fight sleep so much back then! Because my pain is so bad - and also because the numbness in my extremities gets so horrible when she's sleeping on me that I want to cut them off - my husband has to take the brunt of the physical work at night. God bless his tired soul. I already don't sleep much because of my pain - but when you throw in all that screaming on the other side of the wall - you can probably guess that we've all turned in to walking zombies again. And because it doesn't seem to matter how long she's been awake for in the middle of the night, she still wakes up in the 5 o'clock hour every single day, which means we do too. Now that her pain has finally dissipated, and while she's finally not sick, we are working on sleep training all over again. New Years Eve as a parent sure is different than NYE as a young, childless adult! :)
As far as my own health, aside from being a sleep-deprived virus magnet, here's what else has happened since my last post:
In early September we were in Spokane for my brother's wedding, and ended up getting in a car accident after the reception. Luckily none of us were hurt, but our car was totaled (and we were stuck on the side of the road for hours with a baby who had just fallen asleep, hours past her bedtime, only to be woken up by the crash!). The next few weeks were spent looking for a new car, researching and buying new car seats, filing claims, and participating in oh-so-fun (and repetitive) interviews with insurance adjusters. I came home to find a jury summons in the mail that I had to respond to ASAP, and on top of all that, I had two big events at work the following weekend. Easily one of the most stressful times in my life.
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Needless to say, I had completely forgotten about a phone message from the Pain Center that I received the day before we left town. Since they didn't contact me again, it totally slipped my mind. So when I went in for my next regular appointment, I was surprised to learn that I was basically put on their shirt list because I "ignored" their request to come in for a random UA. And I was called in for a random because they found a small trace of alcohol in my system - which is apparently against the rules, unbeknownst to me. I was wracking my brain to think of the last time I even had a drink - and it wasn't until I got home that my husband pointed out that it had to have been my nightly dose of zzzquil, because I hadn't had a drink in ages!
I asked the doctor (a brand new one, again, by the way - who I had to explain my story to all over again) if she could change my prescription because it wasn't helping with my pain at all. She told me it wasn't an option until I had 3 clear UA's - which meant at least 3 more months! It didn't matter that I had a solid record up until then, and had been asking for a change of medication for months prior (to which they always had some sort of excuse). I also asked why I had to come in every single month (because I had checked WA state laws and according to my dosage, should have only been required for checkups every 3 months) - but she could only come back to recent offense - and how the rest of my history there didn't matter. That was the final straw for me. I've seen some majorly sucky doctors in my time, but this whole office really took the cake. I resolved that I would do whatever it took to get the HELL out of there for good. I honestly had been anticipating the day that I could say a big "fork you, see you never" to this place! So I took myself back to my neurologist up north, to get a different referral.
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He agreed that what I was dealing with was poppycock, and happily referred me to a different Pain Center, about 30 minutes north of Olympia. The doctor here assured me that I would, indeed, only need to come in every 3 months since my dosages were so low. That was in November - so far I've gone up there 5 times, and am scheduled to go again in a month - so much for that idea! He was the 2nd doctor to prescribe medication that was supposed to help with pain, and also help me sleep - and just like the last time, it gave me such horrible insomnia, I couldn't take it long enough to figure out if it would help the pain.
We did a round of diagnostic injections just before Christmas, where the needle would get so close to my bones, it took everything I had not to scream out in pain. At the end of the procedure, I laughed through a round of embarrassing tears that wouldn't stop rolling down my face, in hopes that no one would notice. Throughout that same day, I felt pretty dang good, but the next day was just awful, and I've been miserable ever since. I don't know if it inflamed my nervous system, or affected my Lyme, but I can't believe how much worse I feel - from my neck all the way down to my toes.
I had a follow up with that doc a few days ago, and he said I have to do another round of those same diagnostic injections before we can do the "real thing" that is supposed to help with the pain for 6-12 months. Considering that I don't even know if it's going to help (especially seeing what happened after this last round) and that I received an enormous bill in the mail, I'm not so sure I want to go through with it. I tried explaining what's been happening in my body since - but he didn't want to listen or even attempt to talk about what could be going on. Super discouraging. I just want a doctor who will listen and try to think outside of the box to figure out what is happening, instead of continuing to take stabs in the dark! Out of all the doctors I've seen thus far, I believe I've only had ONE who has actually done a physical examination! Ridiculous.
On the Lyme front - I flew over to Spokane in October for another Lymestop visit. Dr. Smith checked again (4th time I think?) for what could be causing my pain, but still insists he isn't finding anything. The good news is that he didn't find any Lyme related viruses this time around either! I did have a virus in my liver, which could be causing some of my other issues, as well as one in my uterus area. He also found that I have a systemic protozoa in my blood - little buggers were invading my entire body!
Despite this good news, I'm still not completely convinced that my body is clear of all things Lyme - and I still don't know if this pain is coming from something mechanical in my spine, or a symptom of my disease. So on top of seeing a new naturopath (a local doctor, finally!) I'm also reaching out to a doctor up in Edmonds at Holistic Healing Arts, who I've heard wonderful things about. He and his whole team studied under Dr. Klinghardt (a world-renowned expert in treating chronic illness, including Lyme disease). So far I've just done a phone consult with him, but he seems like an amazing doctor and person - definitely the most thorough, genuine and compassionate one I've come across. He has a few "ideas" for me, so we'll see how it goes. Hopefully it will finally be worth all the time and money I'll be investing.
Looking back on my last handful of "New Years" social media posts, I see a very apparent pattern. Every time, I note how tough the year has been, and how much pain I've endured throughout it. Each time, I've shared that I'm not any closer to finding an answer. And every time, I post that despite all this, I'm hopeful that the following year is the one where I will finally find some help. This year's end is no different. NYE is like my version of groundhog day and I'm living in Deja-vu-ville.
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So onto 2018 we go. As hopeless as I often feel, I don't think I will ever completely lose all hope, because I feel like there just HAS to be someone out there who can figure me out. Someone who will actually take the time to really listen to what's going on and who treats me like a person instead of a number and money in the bank. Maybe it will be Dr. Wakely in Edmonds? Maybe it will be Charlie Goldsmith? (watch TLC's "the Healer" if you don't know who this is!). He isn't taking new patients as far as I know, but I am going to try my darnedest to get in touch with him, and would do (almost) anything to meet him! Anyone know him?? ;)
I'm not really one for resolutions, but I do have a few goals in mind for next year. The obvious one is to find someone to help with my pain. Unfortunately, I only have partial control over this one. But what I can do, is make myself a happier person. These last 10 years have drained me and changed me. They have beaten me down - physically, emotionally, mentally and spiritually. I feel completely robbed - having to live a good part of my 20's and 30's in a life encapsulated with pain and suffering, hundreds of worthless doctors appointments, insurmountable debt, and a complete lack of a social life - to which no one in my life can truly identify with.
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As depressed as I have felt for a long time, I'm determined to push past that next year. Not really for myself, so much as for my family - my husband and my child. So much of our lives have been spent indoors - at home, on the couch, cooped up inside these walls. Even before our daughter was born, my husband had to sacrifice a lot of his own life - forgoing a social life, a hiking trip, a walk downtown, or a special celebration - simply because I couldn't join him, or he had to take care of me. Now, our 1 year-old is in a stage where she loves to explore, and she absolutely loves the outdoors. There is a park just down the street - and all but one time, my husband has had to take her by himself, because it hurts too much for me just to walk that short distance, to bend over and push her in the swing, or to always hold her like she wants me to.
But I've realized that I push myself past my limits almost every moment of every day inside - why can't I do so outside? Yes it's true, my pain levels are like an 8 or 9 when sitting in, say, a restaurant chair - whereas at home on the couch it's more like a 5 or 6. But if it means experiencing a happier life with my family who I love, I think it may just be worth it. Of course it's easier said than done - knowing how hard my day-to-day activities are (taking care of myself, working a full day, taking care of my daughter, cooking dinner etc) are so challenging, I know it won't be an easy feat.
Yesterday, we took a trip downtown - just to window shop and walk around in an area I've probably only explored about 4 times since we've lived here. And then we walked around in a beautiful Christmas light display at a local residence. It wasn't much - and it was definitely painful - but it also made me feel happy. And somewhat normal again.
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So here's to 2018. To living a happier life with the one's I love, despite my pain. To breathing in more fresh air, achieving a healthier life, spending more quality time with my little family, and exploring this crazy beautiful world. Together.
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