Organization, Lyme Style

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I am so frustrated. I have a bad cold, and I know it's not a herx or anything like that. But the level of exhaustion makes me incapacitated. I get vertigo, bump into walls, slur my words (although I can't tell that I am). I know good days, because they were just a few days ago, rather than the MONTHS ago I used to feel. So while I could hardly keep my eyes open or even move today. I slur my words even though I can't tell it.

The good thing is, the typical Lyme pain in my legs and such aren't there -- just a nasty stuffed nose and the new joy of vertigo and oopsy daisy lets all fall down, probably due to the 11 vials of blood I just gave. I have been so exhausted the past two days that driving was not an option. Apparently, neither was getting out of the bed. I felt guilty asking Zack to feed the cat and answer the phone, but he's always a loving and super helper. Looking at it that way, it's not bad news.

But it's still frustrating. Now that I've been getting better, I'm more aware of what needs to be done, what hasn't been done that I should have been doing for years. Things like dusting and repainting baseboards, a weekly Clorox wiping of the inside of the fridge, cleaning all the door knobs from germs, and that's just off the top of the my head. I want to start cooking again, selling again, working out again, and CLEARING THE DAMNED TABLE. 

It's pathetic. I have the kitchen table covered. I have my work table covered. Rick has been using my office, which now that I have a laptop, I don't miss, but it has a billion antique tchotchkes in it and each has to be carefully dusted.

Not to mention wanting desperately to start lampworking again. Some days my hands are normal, but many days the tremor is horrible. I guess I could see what sort of interesting organic shapes I could make from that! Zack has expressed interest in making beads, both polymer (which I know nothing about) and lampwork (which I'll have to get didymium glasses for him).

I guess you can see why I'm so anxious to spend my good days with as much time as I possibly can. It's been so LONG, and I know so many people who have had it longer, and I think of them all the time. In speaking to some, there are a lot of people who feel the same way I do. Once you start feeling better, even if only for a few day, it's even worse when you have to go back to bed and seeth a bit before realizing, hoping, that the next series of Good Days lasts a bit longer, and the Bed Days allow us to think ahead. Maybe we can't do everything. I don't know many healthy people who can! 

So I'm going to make the best of things and try very hard to quit being a pain to live with when things go south. 

Just looking at these pictures give me a jolt of hope. I'd encourage anyone in the same position to do the same -- look through your photos, look through your journals, pick up your lists, and instead of getting frustrated that you can't do them all now, relish the thought of attacking one or two when you're feeling better. Even the healthiest person has to slow down some times, so please don't compare yourself to them. You CAN do this. 

Just take one step at a time.

A new Lyme doctor, and how to divert panic

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I haven't written my story about contracting Lyme disease, but will soon. What I am excited (and nervous about) is an doctor's appointment at Jemsek Specialty Clinic on October 27th.


Dr. Jemsek came to my attention after watching the documentary Under Our Skin, where they showed a brutal hearing which denied Dr. Jemsek from treating patients with Lyme disease in his practice in North Carolina. The award-winning documentary is worth a watch for everyone. If you don't have an hour or so to watch, please do watch this seven-minute trailer (which features Dr. Jemsek). It covers a bit about how many infectious disease doctors, and in fact many doctors in general, do not believe that chronic Lyme is indeed a disease.

It was an incredible blow not just to him, but to the community and the US at large, as many Lyme sufferers drive crazy miles or even fly to see a doctor who has dedicated their life to helping people manage this miserable disease. Dr. Jemsek is about two hours from us, but Rick has a co-worker whose entire family has been treated by his practice, and after research on the few doctors within a two to three hour radius, we decided to try Dr. Jemsek. For one, he's one of the few doctors who is fine with advertising his name. Most LLMD's don't want their names mentioned, on blogs, even in private Facebook groups. I can't imagine the anxiety they feel when an insurance company calls to let them know they are under investigation. During my two years with my doctor, many things changed. More and more things had to be brought to office, such as simple vitamin infusions.


I had a wonderful, WONDERFUL Lyme Literate Doctor (or LLMD) who retired this year. My hope is this doctor will open their own Lyme clinic, because this person was incredibly dedicated, studied up on everything to be found, was involved in important studies, and in general saved my life. As I'm closing in on the last bottles of medication and have completed two drug trials, Rick and I realized I needed to have a doctor, even though I feel I'm getting better, because who knows what will happen?

The past few weeks have been a bit rough, and I'm embarrassed to say my mood has slid with it. This, of course, is normal. But it sucks and it sucks hard. Even above the near constant pain and fatigue, my biggest problem is I can no longer make plans. I'll lie in bed at night thinking, "OK, tomorrow I will do X, Y, and maybe Z." I've been careful to make these plans doable. I've said "no" to things I desperately wanted to do, but after hitting my head against a wall for a long time, I realized, I HAD TO ADJUST MY ATTITUDE.

If you know me one iota, you know that's difficult. I'm stubborn, prone to the dramatics, serious Type A, and I want things to get done NOW because I have approximately 20,329,323 ideas that I want to start NOW NOW NOW.


So that's it in a rather large nutshell. New doctor in a couple of weeks. Fear because I have no idea what will happen. Anger and disappointment when I can't be ME. Yeah. That.


I'm sure those of you reading this blog can understand, as you're fighting your own battles, too, or are caring for someone who is. My over-simplified advice is to hang in there. When things start to give you panic attacks, divert, divert, divert. Read a book you've read before but know you love. Watch a movie you've been dying to read. Order a set of high-thread-count sheets (ohhhh, that's a life changer. Swoon.) But change directions. Get up and go into another room if you have to. But divert, like I'm doing now, writing.

Love to all.

A use for all those empty bottles!

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If you're a Lyme patient, or any patient of invisible diseases, you are undoubtedly inundated with a ton of bottles. Bottles of prescription pills, bottles of supplements, bottles, bottles, BOTTLES!


Well now there's something positive you can do with them!

These are most of mine. Yippee.

At this link, you can learn how to donate your empty, label-less bottles to Medicine Bottles for Malawi. Too often, people in remote locations in Africa and other areas receive pills wrapped in newspaper or whatever happens to be lying around, and then the person has to trek home in the heat and humidity and store these pills in some manner from weather, vermin, other people, and who knows what all. You also have to hope someone wrote down instructions for those pills, because when you're really sick, it's hard to remember anything.


This is just not a favorable situation at all. Nope. Not one bit.

For instance, Maxalt is a migraine medicine, and as a migraine sufferer, those pills can make the difference between a few hours of pain or weeks of pain. Same with Zofran, an anti-nausea drug I personally take. It, like Maxalt, is meant to disintegrate quickly under your tongue. Melt in your mouth, boom, done. But if it rains or is damp, bye bye pills, and that long trek to an ill-equipped doctor's office was for naught.


So here's how to help!


Set up a container to capture all your empty bottles, and when you have a good amount to ship, take all the labels off.  If they're stubborn, you can soak them off in water and use a Scotch-Brite pad to rub off the paper, or if you have labels that are heat-printed, a bit of oil can erase the entire thing (I learned this the hard way after handling a bottle of pills every night after using lotion, and then panicking when I couldn't read a THING on the bottle, making calling in a refill interesting.)


Next, mail them off to:

The Malawi Project, Inc.
3314 Van Tassel Drive
Indianapolis, IN  46240

Caution: Do not ship children, even though they are convinced they want to see the world and are blowing their horn to say, "Cast off!" Just, no. Another day, kidlet.

These bottle will serve a dual purpose. First, of course, they'll hold medicine. When the bottles are empty, they become useful to people who have very little. I keep bottles all the time to store my jewelry components in, and I guarantee you these bottles will not get dumped on the roadside somewhere in Malawi.


So there is something positive about all that medication we have to take! YES!

Thought for the day

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No matter where you are in your battle, 

No matter how hopeless it seems right now,

There is potential.

I'm currently having a herx, 

and you know what that means..

Pain, frustration, anger, even.

But that's today, and maybe not all day.

Find a spark of potential..

The will to fight.

The gratitude for being present, being alive.

Know that there are thousands of people

who know your pain.

We're all rooting for each other.

You can make it.