6 Months, 3 Posts....What Gives? Now What?

Now we go in with what we know and learn the rest along the way....

It's been nearly 6 months since I started this blog, and I got through the technical stuff, but then I stopped posting. In the beginning, I started this blog thinking: I’ll educate people about lyme with a diary of my disease and how bad it is, so that they will check themselves more often, and by showing maps it would help people in endemic and epidemic areas just how much their risk is increased and how to get help, and as a bonus I get to have a daily diary of my illness and recovery to show just what it looks like... and not only as a way to track the progression of my treatment for myself, but  for others to read to help them get through lyme treatment, to know what to expect in real terms and what they were getting into and AND AND blah blah BLAHBITY BLAH!!!……  Just like all the other blogs. Well, the good ones anyway.

Except....

Except I didn't know how bad it would be. I was so blind to how much this treatment and the disease would ravage my body AND my mind. I literally lost my mind. I lost hours, days, weeks.... It feels like I woke up one day and I had turned a corner and could think again, but that was just a few weeks ago... 5 months into treatment. That was the first time I felt like writing about anything substantial here. Because I thought it all had to be substantial. But now I realize that all it has to be is real.

Honestly I want to get some attention, because the issue of officially approved lyme treatment and it's efficacy is a political minefield, [WHY is an epidemic tick borne DISEASE a political minefield? Oh, you. You’re so cute. We’ll get to that later] and it shouldn’t be. It should be about the victims, the patients, the families and the doctors who are willing to risk their practice, their safety sometimes their license for treating lyme patients with proven effective protocols. This disease…. It’s ridiculous that it is being ignored in the way that it is by parts of the medical community even. But in the middle of a time when I was just realizing just how heavy my eyelashes are, that didn’t sound like something I wanted to talk about. I started out wanting to be the blog with the information AND the real experience. And maybe someday it will be. But that day isn't today.

I have far too much to say about lyme, and far too much lyme still in my system to do it from scratch, and I can't go back and tell my story without some reference material. So here's the deal. I will still be telling my story in chronological order in these posts. But I will be using my facebook posts verbatim with the date and time of the post, sometimes with commentary, sometimes without, with the date that the post is being written... but it will still be in chronological order here. I will let myself tell the story. There are large gaps in my facbook activity, and in those times I will explain what is happening and why I am not posting. Since I can post instantly to facebook from my phone, I thought that this would be the easiest way to track my mental and physical state. If I can't type clearly and post to facebook with my smartphone.... it's a bad bad time. I will also be asking my husband and my friend and caregiver Justine to write posts as well during the down time in activity, because they were the lucid ones watching me go through this. I've been warned that it won't always be pretty and may be hard for me to read, but it needs to be real. Someone has to tell their ugly, gory, scary, heartbreaking, painful, smart, spiritual and hopefully triumphant story. But that remains to be seen.

There have been major elections, natural disasters, political scandals, national crises.... that I will never remember being alive for. It has been 2 years since all of this pain started. 2 whole years on pain killers, 18 months of which was just a pacifier and a bandaid over "we don't know what's wrong with you". The last 6 months have been the best and absolute worst of my life. Finally having an answer was the most freeing thing, the most precious gift I've ever been given (aside from my daughter). Spending a lifetime feeling like doctors were missing something big, and having them look at you like a drug seeking hypochondriac and FINALLY knowing I wasn't crazy all that time? I just can't describe what it's like.

The function of the MTHFR gene is simply to produce the MTHFR enzyme. However, if the MTHFR gene is mutated, the enzyme produced is not entirely correct.
But then.... there are all the pills, somewhere in the 50s, 60s per day maybe? : the antibiotics, antimicrobials, anticytokine, anti-inflammatory, probiotics, specially metabolized vitamins for my MTHFR, IV glutathione injections to correct for MTHFR, sleeping pills, antispasmodics, muscle relaxers, pain pills, anti-nausea pills for the antibiotic that kills the lyme. All the side effects, all the pain from the lyme dying, the pain from the lyme fighting, the exhaustion, the guilt.... oh my god the guilt. Why didn’t this all come up sooner in my life? Why can't I walk today? How much more was there to lose? How can I take care of my daughter? Where had my car keys gone? Why can’t I remember my name? When was the last time the water bill was paid? Why does it suddenly take so much energy to blink? What day is it? Why do I exist?

WHY DO I EXIST LIKE THIS? why.

....to do this?? To watch years pass? There has to be more.

And there is.

There is always more.

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About Me

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Seattle, WA, United States
I was recently diagnosed with late stage lyme disease along with other tick borne diseases, which I have had for 30 years. Now begins the fight.