I had really expected this update to be ice cream and lollipops. I waited for a while because I wanted my setback to pass and this update be full of good news. I seem to be resistant to learning that is not how things go...Despite that, I still have good news to share.
What I thought was a setback, and may still have been, seems to be a patch of low days that are stringing together to do some major healing for me. I remember Matt warning me on my last day in Utah that some of the bad days at home could be worse than the bad days at the clinic. I chose to ignore that warning as I think I believed it to be impossible. He was right, I am shocked at how rough this phase is but I also find it very different from the bad days at the clinic.
This phase is like a long-term endurance test. Before you would have good days and bad days. The good days would rejuvenate you and give you hope and the bad days would set you back. But if you muscled through the bad days, you knew a good day was just around the corner. I had a series of good days at home and really saw progress, then when I had a few bad days, I knew to just hang on, good days were around the corner. Well, I think it starts to function differently, the low days are not as crippling (which is great) but they last day after day and wear down your system. Some of it is mental I am sure but my body is just so physically exhausted, I have struggled more than ever with my treatments.
What I find ironic about this process is I am saying the same things in my head I did on the 300km trail hike after I was bit by the tick (and unknowingly infected). I was sick, had infections, raw feet and wanted to quit. I used to tell myself, to just get up, start the walk that day, put one foot in front of the other and see where it takes you. I would finish that day and wake up and do the same thing again and before I knew it, I was done. I feel like I started my days with Lyme in the exact same fashion I am going to finish them. I am just going to mentally talk myself through them and before I know it, it will be over.
I promised some good news, and here it is. I don't have any scientific evidence to prove this but after 10+ days of pushing hard just to do my treatments, you have a lot of time to assess what's going on, and no physical energy to do anything but. I am convinced my body is giving at all it has to attack the infection in my heart. This setback started with my anxiety at an all time high and now it makes sense. All of my heart and pulmonary symptoms have returned at an all time high and consistently have been there every day, telling me good things are happening.
You may remember that the breathing issues started over 2.5 years ago and what I didn't know was related at the time, was the stubborn knot in my upper back, the shooting pain down my arm and the numbness into my right hand. At the time I had a massage therapist trying to work on it because my right hand would go numb on my bicycle or motorcycle. She then suggested I go to Chiropractor who then sent me to an acupuncturist. Meanwhile, I was going for pulmonary tests and then on to a cardiologist. Not thinking any were related to the other. Looking back now, I realize the pain started where the bite was and all the symptoms stemmed from there. Funny, how it seems so clear now.
The heart symptoms are a little overwhelming and at the time had my doctor very worried, as they would today, if I didn' know what was going on. So I think it only makes sense as my body works to fight the infection in one of the major locations of this disease, it is going to wear me down too. They mimic heart attack symptoms, which is why my doctor was concerned. It is a combo of shooting pain between your shoulder blades, to feeling like a strap is being twisted around your chest. Sometimes it feels so tight that you can't take a full breath and if you try the pain is sharp and intense. Anxiety comes from nowhere and can overwhelm you in a matter of minutes.
Even when I say the symptoms are there all day long, every day, I can feel them shifting too. The location of the pain changes, the back pain comes and goes and the tightness increases and decreases. All proof that things are working really hard to change and that change will be dead Lyme bacteria leaving my heart. So just you wait and see, an upcoming post will be the loss of chest/heart issues...I promise. Those little bastards (they are little now in size and numbers lol) have been hiding in the trenches of my heart for a very long time...no longer, they have been found and are being taken down. I just know it!
Many Lyme patients who were very crippled or affected never had the heart issues. One told me they were told it usually hits the heart last. I have to guess that they hit mine first because of the location of the bite? I was also told the battle of Lyme recovery goes backwards, starting with your last symptoms, moving back towards the beginning. So you can see why this happening now is very good news. We are getting back to the heart of the situation...pardon the pun. But what's not funny is I heard of a young girl who has a pacemaker from Chronic Lyme. So, I count myself very lucky that it didn't do permanent damage and even luckier now that my body is able to finally start taking care of it for good. Yet, it makes me wonder, these are major symptoms, that make me think should have Lyme disease on a list somewhere as a possible cause.
It's hard not to get discouraged when day after day you feel like you are slipping back. But I have been told and keep telling myself it's part of the process. And I am very lucky to be in this process. Like the saying goes, "they can't all be good days, but there is good in every day." I can tell you the nice part of this is I seem to be guaranteed a few good hours every day, so the saying is true more than you know.
When I had a few good days a few weeks ago, a good friend said she saw signs of my old spunk back...a zest for life I have been fighting to regain for good. I know it's there, so that is very comforting. I guess we just have a bit more work to do before it's back for good. And I can tell you, I would rather take the time now, kill every single one of those bastards before moving on. So I am doing all the right things, taking is slow and easy and doing all I can to give my body what it needs to stop those bastards dead in their tracks.
People often ask my how would they know if they have the disease. They feel the symptoms I mention are quite common and they are right. It's not the symptoms themselves that are the problem, it is the full list, they just keep piling up. If you feel some are gone, its just because you are not noticing them anymore because new ones have come around. It is kind of like when they say to stub your toe when you get hurt elsewhere. You will notice the pain in your toe, which is more manageable. You will feel like every aspect and part of your body is injured, wearing down or not functioning properly. Every week, every month, you will have new, major issues which should send you to a specialist and a host of tests. The old symptoms don't go away, you have just figured out how to manage them, as new ones keep adding up. It's overwhelming, it's relentless, it wears you down and you become someone you don't know. I don't know how else to describe it.
So the battle continues, as it should. Oh did I ever mention I was never a very patient person lol. I guess the saying is also true that we are given challenges in life that strengthen our weaknesses. I have a LOT of work to do on my patience, so this may take a while lol.
But, what I think makes me the most impatient is wondering what is going to happen to help others? I am going to heal but this situation should help others avoid this process, at least cut down the time and effort, but I don't know how that happens...