Update on my Lyme Story

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You'll notice I haven't actually written "Learn About My Personal Journey" under the tab actually labeled "Learn About My Personal Journey". It's really such a mess of a story that it's a daunting task but one which I really need to do. I also have friends who have submitted their stories, and I am WOEFULLY behind on email and in getting any project done at all, really. But as I have better and better days, I'll write more.


Ironic, isn't it. I started this blog thinking I would write every day. And then I found I could hardly write at all. It seemed so futile at times. Then I found this quotation:


"Happiness can be found,
even in the darkest of times, 
if one only remembers to turn on the light." 

Harry Potter and the Prisoner of Alkaban- Quote by Albus Dumbledore

source

So I turned on the light.


I decided that if you are here, you must have an interest in other people's journey through the complicated medical maze that is Lyme disease with its many co-infections and other invisible illnesses. If Dumbledore brought you here, well, he always had a reason for everything he did, didn't he?


Now the update;


* I did not get a wheelchair. What I thought was a smallish, easily-usable wheelchair was called a Transport Wheelchair, and that key word, "transport", was what removed that idea from the list. A transport wheelchair is for someone ELSE to transport you to your destination. The wheels don't turn the same way a traditional wheelchair's do. Imagine the wheelchairs used in airports or even in airplanes -- you're pushed in a fairly straight line from Point A to Point B. But I wanted to go to a lot of points, and on my own and that couldn't happen. But that's OK, because I have started feeling much better.

Me on a very good day this February.

* Which leads to, I've started feeling much better.  That comes with a caveat, though. I never know WHEN I will feel better, or for how long. All I can tell you is the times are lasting longer, and the bad times are less severe. "Less severe" can mean pain level down from a level 10 to a level five, with a headache almost every day, abdominal pain fairly constant, but no leg pain at ALL, which is HUGE, because I was feeling like my legs and feet were burning off or being eaten up by fire ants or both at the same time. I still have many days in bed, but I have slowly been seeing many more days OUT of bed, and when I'm in bed, I find myself not having to nap nearly as often.

It is now never this neat. Not even close. And we added another bookshelf.  Oh, and the trunk is covered with stuff. And the floor. So, yeah. I've lived here for a couple of years, and it shows. Just not in this picture!

* I have 24 more weeks of treatment before I am 99% sure I'm going to tell the doctor I have to stop all antibiotics and see what happens.  What I'm going through now I describe as "Lyme Chemo" because you feel like garbage for two weeks with three to five antibiotics cycled on various days, then about ten days off. This is an attempt to get my body's immune system used to fighting on its own. Part of my treatment is the dreaded antibiotics, but a large part is naturopathic. I can't handle the see-saw anymore, and my body needs a break. I felt my best the month I took just one antibiotic and concentrated on getting my pain down and my sleep normalized. The sleep is still a problem (an irony of Lyme disease -- you're incredibly tired but you can't sleep.). I've drastically reduced the number of muscle relaxers and pain medications as I've gotten a scary tolerance to them and they aren't helping anyway, using melatonin and deep breathing exercises instead.

My mantra ... peace.

So that in a large nutshell is where I am. Improving, but in a random way. Some days can be bad, and even very bad, but I feel I'm on the upswing, and I wore my "Glass Half Full" shirt from Life Is Good today to the dentist and really felt it. I still got the crap news that I have a cavity, and I fear the dentist more than doctors, which is saying a lot, as "caine" drugs (Novacaine, Lidocaine, etc) don't work on me very well, so .... yeah. But those lovely Borrelia burgdoreri bacteria love to chew up calcium, so I feel pretty fortunate that I've managed this long without any trouble.


Thank you for reading. It means a great deal, and I hope that in some way, this blog will connect with someone so they don't feel alone in this. It's not fun, often misdiagnosed, and difficult to get doctors to treat fully and properly, but every day, changes are happening. See my previous post, for instance!


Please feel free to leave comments or email me privately!


Be Well!