cover me in sunshine.

Before we begin… disclaimer: I’m not a health professional. This is just me sharing my journey and what I’ve learned along the way. Please always consult your own doctor. Everyone’s journey is their own. I’m always happy to share resources with people and be someone to journey together with!

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So I've used the roller coaster analogy multiple times, because it's incredibly applicable. Get a little better, get worse, get a little better, go down a little bit, take a weird turn, go back up and feel some changes, and so on. But what's even more relevant is when you go down on the roller coaster and you get that 'Oh Shit!' look on your face. Now that. Is. Real. The highs and lows of the Ashlee Suker life --> Probably should be my bio title.

I think I basically already summarized the last eight months of my life in roller coaster analogy. I was doing reasonably well for a bit there this spring, in Ashlee terms at least. This basically means that most days I experienced a period of 'I feel okay'. I didn't constantly think about laying in bed. I cried rarely or sometimes. I didn't need constant pain relief drugs to get by. And Ben told me I seemed more myself. I take Ben's notes very seriously since he spends the most time with me and I'm probably the most real with him of anyone. He told me my biggest giveaway that I'm not okay is if I'm quiet. This will not work in all instances because I also get social anxiety and shut down. Or if I'm processing information I'm quiet. But if we're friends and I'm quiet or you don't hear from me, it's probably a good indicator. Anyhow, I knew I was going back down the roller coaster and tried to disguise the 'oh shit' face by remaining engaged and chatty for as long as possible. I was almost going to say I'm a good actor, but I don't actually think that's true. Some people can see right through me.

The best way I can think to describe how I feel right now is that I'm wearing one of those lead x-ray vests, except it's a whole body suit. So I feel very heavy, weighted down, and achy. I'm extremely exhausted. I often say "I'm just tired", but that isn't even close to truly describing the fatigue I feel. And with those two things my head just feels foggy. This is why I sometimes just don't engage with people much. It's hard to carry on a conversation, especially if I know I'm going to have to do a lot of the carrying. This isn't to say that I don't talk with people though. I mean I can't hermit completely. Even I know that's not good to do. I just have to find a balance. As the weeks went on I felt the balance tilting gradually in the wrong direction. Chances are if I'm meeting up with someone or going out to do something I drank a cup of coffee, took some pain meds, and did some extreme pep talking to get myself amped up. And then I pray the adrenaline will carry me through the event. Then as soon as I'm done I crash hard.

I know what you're thinking... didn't we just hear about this? has anything changed? I thought you were better? And if you're thinking this, just imagine what I'm thinking and feeling... And then envision what my mental health is like somedays... So this is what I do: I make a mental list of the things I have overcome in these last years, what I'm actually doing to get better, and think of the people in my life and the kindness they show me. I go through a reel of memories that makes me laugh or smile. I do things that make me happy that I'm capable of doing in that moment. And sometimes that just means laying in bed. Sometimes that means hugging Ben and crying. And sometimes it's just watching my kids, soaking in the wonder and the essence of them.

As some of you know I worked really hard on healing from mold. And I did make really good progress. But something clearly still isn't quite right. I recently decided to do a Lyme co-infections test. I took a Lyme blood test many years ago and it was negative. I did another lab test early 2020 that tested some co-infections and nothing popped up there. But this time around there was one co-infection that did show up. It was minimal, but it was something. Based on all of my symptoms, everything I've done thus far, and where I live... we determined it's best to go ahead and treat Lyme co-infections. Is it going to work? Who knows! The amount of optimism I've kept all these years through all of this is actually fascinating even to me. Sometimes I'm like, 'Seriously Ashlee, don't you get tired of being optimistic?'! Yes, yes, I do. Between every fall there are days of processing and letting myself just be and feel how I feel. Sometimes it's hours and other times it's days. 

But guess what! I refuse to keep living this way so I'm going to keep trying. Because I want to dance. I want to enjoy my time with the kids. I want to toss the football in the backyard with Theodore and have him tell me that Ben is better (fine, I don't want him to tell me this, I'm NOT that bad). I want to take Violet to do Violet things. I want to go on adventures with friends. I want to travel with Ben. I want to work full-time (meaning I want to be able to help pay the bills and not just be the bill). I want to eat a wider variety of food. And I basically just want to live life fully without so much pain and fatigue. That's not to say I don't do these things now, but they often come with limitations and consequences. The beautiful thing is that at one point I was not able to do many of these things and now at least I can in some capacity.

I started physical therapy about two months ago now. I decided I was tired of injuring myself every time I tried doing a physical activity. I'm not always the best at gradually doing things, I just jump in with both feet. Like is it a good idea to do a fly bungee class when you haven't been doing workout classes at all? No, no it's not. But did I think it sounded so cool that I wanted to try it anyway? Yes, yes I did. Did I regret it? Possibly, but it was still a cool experience. It took me weeks to recover. Yes, I said weeks. It's a little hard not to get down about these things if I'm being honest. My body can not keep up with my desire to adventure and try new things. Anyhow, I came to the conclusion I should go back to the basics and with help. I've done PT a few times in my life and each time has been different, this time included. I think the most noticeable improvement so far is that with the core work I've done my ribs don't feel bruised anymore. They weren't bruised, that was just how the pain felt. Now it only happens occasionally. And as long as I keep up with my exercises it usually stays at bay. And even though my body still feels heavy, tired, and achy, I know that I'm stronger than I was. My hope is that if I just keep going with this and the new treatment I'm doing is effective, I will come out better than ever on the other side. Cue "A Million Dreams"... "I close my eyes and I can see, A world that's waiting up for me... "

So what now? I just started a new treatment protocol last week. I'm doing pulse dosing of IS-Borr (Immune Support Borrelia) in hopes that I can get to a full optimum dose quicker. With killing off any type of infection you're going to experience die-off, which can create excess inflammation. So you want your body to be able to handle it and be able to carry out the endotoxins the borrelia sheds from its cell wall when it dies. Rather than start low and slow with the dose we are going to try higher doses, but space them out and gradually work my way to taking it every day. This allows my body to recover a bit in between doses. If I hit it too hard at once it will completely knock me down. I take other supplements to help support my body through this process as well. I will do three cycles with a different supplement for each cycle. Each cycle will last 2-3 months. So it will take 6-9 months to complete. Typically with Lyme, antibiotics are used for treatment. This can work well when lyme is first contracted and you're in the acute stage (sometimes it's not effective and symptoms continue after antibiotics, see study and study). But once it's past the acute stage and develops into "late lyme", it becomes more difficult to test and treat. The immune system may not have created enough antibodies to get a positive test result. Lyme is also good at defending itself by building biofilm, which can make it more resistant to antibiotics and makes it more difficult to detect in blood tests.

I'm now two doses in (I wrote the first portion of this blog a few weeks ago) and it's been going okay. I took the first dose in the evening and got very little sleep that night. So that was either a coincidence or a bad idea. The next day I was exhausted (obviously) and had more issues with my head. I like to just say, "my brain hurts". The second dose I took 7 days later, but in the morning this time and I doubled the dose (I was supposed to do 5 days in between, but didn't want it to interfere with work). This time I'm having more issues with pressure and almost like a vibration/pulsing feeling in my head. I'm 48 hours in, so hopefully by tomorrow it lets up more and I get a break before my next dose. This next time I need to get on track with the plan and take the third dose Tuesday morning and hope I can just power through. 

With the adjustments we made to my protocol in general two weeks ago I've been able to manage my overall pain much better. The fatigue hits me in waves. I'll do well for portions of the day and then I get hit really hard and it's not easy to snap back out of, if at all. I still take naps or at least lay down as much as I can. My biggest frustration has been the brain fog. When my head isn't working right and I can't process information, get confused, feel out of it, or just can't say what I mean, it's challenging not to get upset. I get these moments where information comes at me and I literally can't retain any of it. I try my best to stay calm, because panicking is not helpful. But seriously! When someone is telling you to do something and you can't retain what they're saying, you feel like the hugest idiot. It's downright embarrassing and trying to explain it is nearly impossible. Plus, you don't want people to not trust you because of these moments you have. It's hard to navigate illness when you're sick, but not sick enough. There's this middle ground where it's so dependent on you to manage it and set boundaries. And for a person who doesn't want to disappoint anyone, sucks at speaking up, and just hates not being good at things, it's even harder. But I'm here, I'm doing my best, and I'm not giving up.

Love to you all! <3

Ash

p.s. I'll try to update progress sooner rather than later this time.

p.p.s. I still experience a lot of joy in my life and laugh every single day despite the challenges ;)

"It turned out that joy wasn't made by the destination, but rather discovered in the journey." -Kandi Steiner, Weightless

Lyme-y Tidbits:

• In a study of 3,090 Chronic Lyme Disease patients (those who experience symptoms for longer than 6-months), only 18% were able to maintain their current job status. The rest either changed the nature of their job (10%), reduced their schedule (16%), or had to stop working all-together (43%!). 

• Ticks and other biting insects can spread more than 200 types of bacteria and viruses. These are called co-infections. Common types are: Babesia, Bartonella, Ehrlichia, and Rickettsia.

• It is possible to have a Lyme co-infection without having Lyme disease. Some co-infections can be transmitted in other ways besides tick bites.

• Not all people develop a bullseye rash. It's commonly thought of as a bite, but technically it's a sting. Which is why it can go unnoticed.

• Chronic Lyme Disease has many vague, inconsistent, and hidden symptoms. It can also mimic illnesses like arthritis, lupus, dementia, MS, fibromyalgia, and chronic fatigue syndrome. Testing isn't always reliable which means about half of people with Lyme aren't diagnosed. (MISDS)

• Lyme disease is caused by Borrelia burgdorferi. If it goes untreated and remains in your system, it will burrow into your organs and tissues. This leads to a plethora of health issues.

• More info can be found at ILADEF, Global Lyme Alliance, LymeDisease.org, and Microbe Formulas Learning Center.