Well, another year, and decade, has come and gone!
2020 marks 13 years of dealing with my symptoms and beginning my quest for health, and 15 years of having Lyme. Even though most of those years have gone by as fast as 2019 did, it's still a long damn time. Sometimes it feels like I've been this way my whole life. It’s definitely becoming more difficult to recall what life was like before.
Twenty Nineteen was an interesting year. I wasn’t as sick as I was in 2018, but that doesn’t mean my health has improved, just that we haven’t been “poking the bear” as much, which has lightened the detoxing load. My doctor decided to pull back on most treatments and supplements, mostly because we can't afford it, but also because it was getting to be too difficult for me to manage, along with my full time job and taking care of a toddler. Although I still spent a majority of my non-working hours at home, I was able to life my life a bit more, which was so great.
Our daughter had a lot of firsts this year, which was so fun to experience through her eyes!
In February, our area encountered "Snowmaggedon" where the entire city was closed for about a week. It was admittedly quite challenging for me not having a daycare break, but it also made for some great memories. Brynn had her first sledding experience; the kid loves her thrills, and couldn't get enough. Thankfully we have a decent little hill right across the street so I didn’t have to walk far. We had our fair share of hot cocoa and couch lounging too.
In the spring, we visited my sister's family in Oregon, where little B got to experience her first circus. She didn't have the best attention span, but especially loved the big safari animals. In June, we took a trip to Idaho to visit another Lyme doctor, and made a quick stop in Spokane, where she got to ride a carousel for her first time.
During the summer, we took a trip to my hometown for a few more firsts: swimming in a big public pool, and riding in Grandpa's combine during wheat harvest. We stayed in town for the Fourth of July where Brynn experienced her first parade. That one was especially tough on me, but she loved it. I also had my 20th High School reunion this summer - I still don't know how I got to be this old, but it was great to see everyone.
Brynn turned three this year, and we hosted our first “friend” birthday party at our house, with thirteen little ones. I hand-made everything from the cupcakes, to the piñata, to the invitations and decor. It was a lot of work and very tough on my body, but I also got so much joy out of it. We took little B to her first Disney on Ice experience as her present, and it was nothing short of amazing. Standing in a very long line to get into the building, and then sitting for hours in a hard arena chair, was very tough, but again - so worth it.
The year included several beach trips (my version of heaven), painted nails, baked cookies, crafts, birthday parties, cousin time, and lots of backyard play. I pushed myself to get a lot of it done, but balanced it out with plenty of Epsom salt baths. We have also finally started to make some friends, after 7 years of being in this town. All of this is definitely helping me get out of my social depression, and it feels good.
We completed the year with some quality family time, which I always cherish. Board games, movies, hot tubbing and lots of cousin play is the best way to round out our year. It's always sad to come back to Olympia so far away from everyone. We also started off 2020 right, with another first - little B's first movie theater experience to watch Frozen 2!
As far as my treatment goes, I have been making a "bit" of headway. If you read my last blog, you'll know that I started injecting peptides this last Fall. That means that I’m giving myself anywhere from 2-8 shots per day. I've probably discarded about 4 big jugs-worth of needles. Luckily, I've gotten to be quite acclimated to being a pin cushion over the years, so it's more of an annoyance than anything else. I'd say it ranks right up there with having to deal with my eye contacts every day. :p
I won't go into what a peptide is, as I did in my last post, but I will say that this is another "trial and error" course of treatment since it's relatively new for Lyme, and also because each one of us reacts so differently. There are many kinds of peptides with different purposes, but the main objective is to improve my immune system. We've done a lot of layering, which means that I'll inject 3 or 4 different peptides at a time. I also "pulse" them, which means I'll inject one for 10 days and then stop (much like antibiotic treatment) or do one for only two days a week, in a way to "keep my body on it's toes”.
Contrary to my belief when I started, that this treatment would be $300 a month, it's actually more like several hundred PER VIAL, which means I've been spending closer to $1,000 each month. With that said, I'm not sure how much longer I can continue, but so far it's the only thing that has made any significant flux of improvement.
My first few weeks into injecting, I noticed that I had moments of time where my pain was nearly gone! I remember going to the Pumpkin Patch with my fam, and made it through the entire excursion without feeling like I couldn't stand or walk for one more second. This was HUGE. For almost an entire week, I had more good than bad moments. For 3 or 4 mornings in a row, I was able to wake up and not hobble to the bathroom; to take care of my daughter immediately without rushing to my tramadol and heating pad. IT WAS AMAZING. In fact, I felt almost normal again. I had honestly forgotten what it was like to live life without pain controlling every little thing I did, and to have this taste of normalcy again was beyond incredible.
I spread the news with hesitated enthusiasm. Because, I know what my body is like. There have been two other things that seemed to be "the answer" in the last few years, only for my hopes to be dashed just a few weeks into it. Despite the fact that I felt this treatment could produce different results, just as I expected, it happened again. Just one week later, and I was back to my normal.
That's when we started the layering and pulsing. Since then, I have had sprinkles of good moments. That's to say, not as it was the first time - a full on rain shower - but little drops of goodness here and there. For instance, I'll go out to the park with my family and feel pretty good with minimal pain, but then the rest of that day I'll be laid up on the couch just as bad as I was in my worst moments. Or I'll have a decent day, where my pain is, say 40% and manageable but then the next three days are 90% pain days. My bad moments far outweigh the good (80/20?) but at this point, I'll take whatever I can get!
I will say that my energy has really improved. That could be from the peptides, but it could also be because I started taking thyroid meds around the same time. Either way, it's nice to not be in a constant state of lethargy. Most of the time, I'm sleeping quite well about 1 week out of the month (probably more thanks to a cocktail of sleep aids) but that's better than constant all-nighter's and 2-4hr night sleeps. I still never ever wake up feeling refreshed, but it sure is nice to have a good night’s sleep here and there.
The hard part about having more energy, though, is that part of my body wants to go, go, go and get everything done that I haven’t had the strength and energy to do before. For instance, I spent a lot of my Christmas break organizing my home - to which I haven't been able to for years.
If you know me, you know that I'm very much a type A organizer, and it KILLS me to walk by parts of the house in such disarray every day. Much like everything else I do, I end up pushing myself way past my pain threshold, because I start out feeling pretty good, but then can hardly stand straight half way through. Yet I can’t bear to leave a project midway! It doesn't help that our house is super tiny, with no storage, so leaving it mid-project means walking over crap in the middle of the bedroom for two days. I just cannot! Anyway, as nice as it is to finally be feeling well enough to start any project at all, I've sure been paying for it.
So, yay for some physical improvements!!
Mentally, I’m not doing quite as well. In fact, I’m beyond exhausted.
For one, this past year was a bit tumultuous as far as some relationships go, and did not end without a fair share of drama and tears. I also had a very stressful work year, with less time to take a breath than I’ve ever had before. In that regard, it was one of my most mentally taxing years in quite a while.
If you’re a subscriber, you know that I’ve been putting off blogging for many months. Partly because it's a chore that always ends up at the bottom of my priority list, but also, because I'm genuinely just so dang tired of talking about this disease. About as tired as I am of having it.
Bear with me here as I release these feelings, because I'm sure it will make me sound like an awful person. But when I was home for the holidays and my mom mentioned Lyme, I realized just how done I really am.
I'm tired of some people asking how I'm feeling each time I see them, as if some miracle would have happened overnight that made yesterday different than today. Or of people thinking I'm doing much better, simply because I managed to plaster a smile on my face for "The Gram". I'm weary of people sending me the latest treatment options they read about online, or heard about from their friend's cousin's aunt. I know that sounds especially ungrateful- I do appreciate that people are thinking of me - but chances are that I've probably already heard about it, and either have already tried it, know that my case is likely much more complex than the person it worked for, or most likely of all – can’t afford it.
I'm drained from telling my story to new people; of trying to relay the hell that the last decade has been for me and my family. Because how do you really put that into words, let alone a 2 minute conversation? My initial efforts and inspirations to "spread the word" seem futile at this point, because I have realized that the only people who will ever truly get it, are the ones who have it. And even then, with each case being so different, some of them don't even understand. I'm shattered from being judged...by the people who think I'm too negative, or too fat, too lazy, or too angry, without any idea of the real weight I've carried for so long.
Ironically, even though I feel this way about talking of my disease, I'm also just as fed up with the invisibility of it. Of the daily realization that people around me who know I have Lyme, seemingly forget about it. Some have even admitted to that. So even if I've helped them understand in a small way, the hardships of my day-to-day life, because they can't SEE my illness, it's out of sight out of mind. It's also now gotten to the point that when I'm with the people who I see the most often, I hear crickets when I mention anything Lyme-related. I'm sure that for the most part, it's because they are just as sick of hearing about it as I am of dealing with it (aka my spouse, understandably so). For others, I think it's because they are afraid of discussing something they don't understand.
All that to say, what I'm almost more tired of than anything, is the incredible loneliness.
Even my doctor has told me that I need to come to terms with the fact that no one in my life is ever going to understand what I’m going through. It’s a hard pill to swallow. But I now realize that the only people who can probably help me fill the void are those who have walked in my shoes.
I have been blessed to become online friends with a fellow Lymie, who actually went to the same college as I did. Rachel gave some of her time a few months back, to help coach me. Probably the only real and raw conversations I had this year about Lyme, aside from with my doctor, were with her. Every time I get to that point, the floodgates open, and I break down in tears. I realize how much I keep inside of me the rest of the year. And that relying on these sporadic blog posts as an outlet is not good for my mental health. I honestly think I need to find more people like me, and like Rachel, in 2020.
One thing that she helped me realize, is the power of mindset. Despite the fact that there is often very little I can control with this disease, there is one thing I can manage, and that is my attitude. It’s very easy to feel sorry for myself and to focus on all the things I can’t do or that I can’t have. I battle with this every single day.
There are a lot of people out there who have it way worse than I do; of course, that’s something I’ve always known. But in this age of social media, it’s tough not to compare your life to others. And when you see their Instagram life versus their real life, it’s especially hard to keep the envy at bay.
But then the other thing that stands out to me in this online world, is the amount of devastation and heartbreak that’s out there. Shootings, suicides, accidents; lives that are cut much too short, in the blink of an eye. And as angry and bitter as I admit to being at God for the hell I’ve been through, I’m still so grateful for being alive. For having a job, and a roof over my head. For being blessed with an amazing family and a daughter who brings me the greatest joy.
As mentally difficult as 2019 was, I’ve definitely come a long way from a year ago, when I was probably the most depressed I have ever been. This year, I hope to maintain a positive mindset in everything I do. To not get hung up on my limitations, to appreciate the little things in life, and to celebrate even the slightest of baby steps. I plan to take better care of myself. I hope to continue to foster the good relationships that I have, and build new friendships; to find a good balance of people who I don’t need to talk about Lyme with, as well as those who I can, and should talk about it with. I pray that we will somehow be able to continue to afford treatment, that my good moments will start turning into good days, and that this decade will be much better than the last!
NEW YEAR. NEW DECADE. NEW BEGINNINGS!
