In the midst of a social media world, where everyone and their mother (and brother and cousin) posted their excitement for a new year, I've felt like the odd-woman out. I was in THEE WORST mood this New Years Day. I had an overwhelming sense of depression come over me out of nowhere - like I had fallen into a pit of sadness that I couldn't crawl out of. Even my daughter noticed that something wasn't quite right with mommy. Honestly, I know I'm probably not the only one that felt this way. And it makes sense - the cheerful Christmas season is over. Family time is no more. Vacation time turns back into work time. It's darker and colder than ever outside. And the drive home is no longer illuminated by the beauty of homes covered in twinkle lights. January just plain sucks. But, for me, it was more than just the normal post-holiday blues.
In general, 2018 wasn't that great. Although I did begin the year with a bit of hope, because I had recently started seeing a new Lyme doctor - who has been, hands down, the best I've ever known. My main objective for seeing him was, of course, to conquer this damn pain once and for all. Most of my other symptoms had been manageable, meaning they weren't great, but they weren't necessarily stopping me from living life like they had been. However, it only took one visit with Dr. W. to learn that I definitely wasn't as well off as I thought I was.
His tests showed that not only was every virus and co-infection I thought I had beaten still inside of me, but that my body was host to a lot more issues than I had ever imagined - Borrelia, Bartonella, Babesia, Rickettsia, Ehrlichia, Epstein Barr, Parasites, Stressed lymph, liver, thyroid and kidneys, Fungal infections, Viral infections, Hypothyroid AND hyperthyroid?!, Mast Cell Activation....the list goes on, and honestly I've been putting off this blog because the year was such a blur that I can't even remember most of what he diagnosed me with or what we've talked about. I believe Dr. W. said that he rates infections from 1-4 (4 being worst) and most of mine have consistently been at a 3+ - which he says he rarely sees that high. He's not the first doctor to tell me that I'm the most difficult case he's ever seen. It's definitely hard to imagine getting better when you hear this over and over. He also told me that he's confident my pain is related, and not a structural issues like other doctors have tried to pass off on me. Unfortunately, he's also said that this pain will very likely be the very last symptom to go away.
We've done a lot over the course of the year. My husband and I drove up to Edmonds every 4-6 weeks for a check-up and treatment that would last anywhere from 2-4 hours each time. Dr. W. is very advanced and uses a lot of European therapies that are somewhat uncommon here in the states, but very successful across sea. For instance - Autoheme injections: drawing one's own blood and injecting it back into their body to boost the immune system. Low dose allergy & immunotherapy treatments. Neural therapy, which involves injecting procaine in the body to promote healing and repair dysfunction of the autonomic nervous system (see the link below - interesting stuff!).
https://www.practicalpainmanagement.com/treatments/complementary/prolotherapy/neural-therapy-its-role-effective-treatment-chronic-pain
There are other things we've tried, or are trying, that I can't even begin to explain. And of course, a multitude of pills to pop and liquids to drop, every day. The most frustrating part is that every time my doctor tries to "attack" something IN my body, my body attacks me back, that much harder. Even the slightest bit of treatment will put me in bed for days. Over the summer, I did a several month-long treatment for parasites. It was KILL-ER. At one point, I was holed up in my bathroom for 4 or 5 days straight. Aside from all the stuff I don't want to talk about, I had cramps that literally felt like birthing contractions all day long. I mean, they were so bad that I was puking from one end and expelling blood from the other. Ew, I know. That was just one of the many fun medical moments of the year.
2018 was easily one of the toughest years of my Lyme battle, yet. I don't remember a single day where I felt "good" or even "kinda good". I think what makes it the worst is that I've been dealing with ALL of the symptoms at once. The first 4 years of my battle was mostly digestive and systemic issues, without the pain. The next 4 years, the pain came in, but the other stuff had improved (because of my Lymestop treatments). But now, I'm dealing with all of the above at the same time on a very consistent basis. Nearly every day has been a huge challenge. I've gotten to be so strong through all of this - but there have been so many times that I would love nothing more than to lay in bed and shut out the world.
Of course, laying in bed all day isn't an option. And wouldn't you know - when it finally has been time to rest my head on the pillow - I can't sleep at ALL! My nervous system has been on such high alert that about two weeks out of each month (sometimes more) I've been wide awake until 4 or 5am. Nothing I do will calm it down. As I lay there in misery, I imagine all those little buggers inside of me throwing a party all night long - complete with a fully hosted bar, a dance floor, and raging music. It's been awful! Thankfully my husband has been doing the majority of the 6am wakeup calls lately. Still, getting 2-3 hours of broken up sleep each night makes working and mommy-ing extremely tougher than it already is!
Our toddler, who turned two in November, is very much a mommy's girl - which I love, but is also incredibly tough on me, physically. Any time I attempt to go anywhere in public with her and my husband, she's always insisted that I be the one to hold her. I can't enter (or leave) a room without her latching onto me. When she needs something (say, more applesauce for dinner) - she will always ask me for it, even if my husband is standing right between her and the fridge. She's my little toe-headed leech. A leech who I absolutely adore, but who literally sucks the little life I have, right out of my Lyme infested body. I thought it would get better as she grows older, but it's actually gotten worse! If you're like my sister, you'd tell me just to stop picking her up. Which I do try. But it's actually more difficult for me to deal with her meltdown if I don't take her, so I usually end up pushing myself through it. As hard as it is on me, I try to soak up these moments while I can, because I'm sure she'll be a teenager before I know it, and she may not feel the same way about me by then. ;)
Then there is my job. Somehow, through all of my health struggles, I power through a 40-hour+ work week. I have a very stressful job as an Event Director. And I only call in sick if things get REALLY bad - because if I took a sick day every time I didn't feel good, I'd literally never be there. In 2018, two new events were added onto an already jam-packed year - which meant that up until the last week in December, I was stressed to the max every single day. Obviously, stress does no favors to anyone's health - but it really has an impact on mine - especially where my pain in concerned.
And I continue to have setbacks that are preventing me from moving forward. Most recently, over Christmas break, my pain doctor switched up my medicine (after being on tramadol for 4 years except when I was pregnant) and I experienced the most horrible withdrawals all week. My bones felt like they were being squeezed in a vice, my muscles ached like no other, I had chills and fever, headache and stomach issues, and the absolute worst anxiety of my life. I would have never switched meds, especially at Christmas, if I knew that was what would happen. What a way to spend the holidays with the family I never get to see - I was pretty pissed at my doctor, to say the least! Anyway, it was also about the time I was supposed to climb up to the next step in my treatment, but because of my withdrawals, my Lyme doc told me to hold up. And now a few days ago, I learned that the horribly painful rash I've had all around my torso for a week is SHINGLES! WTH?! So just when I think I can finally take that next syringe of meds in my fridge...I have orders to hold off (again!) until I can flush this new nastiness out of my symptom.
It's interesting looking back at old blogs and social media posts of my own at NYE time. There's definitely been a pattern. No matter the hell I've gone through the previous year, I've still had some sort of hope that things could turn around the next year. But it's so difficult reading the same thing over and over, and realizing that not much has really changed. And at least I used to be able to still go out and celebrate NYE like a normal person....now I haven't left the couch in the past five. 2019 marks the ELEVENTH NEW YEAR in my quest for a medical miracle.
Can you imagine having the same resolution, for that many years, and never reaching your goal? Feeling like you're in the same damn spot (or worse off) year after year after year? And can you picture not having much control over reaching that goal? It's like having a resolution to lose weight, under the supervision of someone who doesn't have your best interest in mind, telling you what you have to eat every day (ice cream for breakfast anyone?) and keeping you from exercising or doing anything healthy. Chances are, you'll end the year heavier than ever, with a pretty bleak outlook on ever losing those pounds.
It's so incredibly disheartening. And makes it tough to want to keep fighting. I'm so tired. I mean, I'm literally exhausted. But I'm also just TIRED. Tired of pain and sickness. Tired of the most incredible loneliness I've every experienced. Tired of my life being nothing other than work, doctor appointments, and laying on my couch. Tired of missing out on life. And I'm so damn tired of watching everyone else celebrate the exciting year they've had, or the exciting year to come, while I sit hear dreading another monotonous, lonely, depressing year full of sickness and struggle. With the way the last year has gone, part of me wishes that I would have never opened up the floodgates - that I would have just dealt with the pain and my otherwise "ok" days for the rest of my life. I don't know how many more 2018's I have left in me. But I might not have a choice. I'll still hope and pray that 2019 is the one - but I definitely don't believe it as much as I used to.
