Just 24 hours…

What a difference a day makes.

And a good night’s rest.

And an LLMD who is reassuring.

The other night, I couldn’t sleep for crap. I tossed and turned. Got up and watched tv. Poked around the internet. Watched more tv. Laid on the couch in the dark.

I even journaled. But it was way too dark an entry to put here. I was feeling helpless, and quite hopeless as well, and when mixed with a frantic need for sleep, well… the boogeyman finds an easy way terrorize me with my own thoughts.

You see, I had been off my meds (all except my herbals), for over a week, and one of the first things to go is my ability to sleep. And the pain was beginning to creep in, and the fatigue, and I was panicking because I knew my LLMD is trying to get me off my meds, since it’s been more than a year of treatment.

I had an appointment with her that morning, and I was already on the web looking to find someone who would continue my treatment so that I could make it through school. I’ve restarted down this path, and by God I absolutely CAN NOT stop now. Too much time and money has been reinvested, and I won’t stop just because of Lyme disease.

So, despite the poor sleep, I managed to get my butt in the shower and make it to my LLMD appointment that morning. I think she saw the panic in my face, or at least heard the undercurrent in my voice.

After a lengthy discussion, she let me know that she will not abandon my needs during school. She will continue with my current meds, and add an additional one that will be pulsed for 3 days during each of the next 3 months. As long as I’m improving, I’ll see her at the end of those 3 months. She’s convinced that something else is going on, though. Something is *not* being appropriately treated, and it’s keeping me from a complete recovery. So, more blood tests were done, and with any luck, they’ll add the missing pieces to this puzzle.

I felt like the proverbial weight of the world was lifted from my proverbial shoulders when I left the office yesterday. I was still tired, and my joints still ached like the dickens, but my spirit was calmer.

And last night, I slept the sleep of the dead. Sleepy

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17 years ago today

So I’m going to take some time and gush a little, all in the name of being thankful.

Seventeen years ago today, my husband and I got married. Our church wedding was held in September of the following year, for reasons I won’t bother to go into, but today was when we legally became husband and wife.

I don’t think I completely realized exactly how lucky I was.

We’re Italian, I was born here in the US, and he was born in Italy, and passion and loud voices always made for quite a tumultuous ride. It still does, in fact. But as I got sick, I think it has only become clearer exactly how deep his love and commitment is to myself and our family.

That man, God bless him, tolerates a lot of crap. I can be loud and persnickety on a good day, and when my health began deteriorating, so did my attitude. But he stood by me. Stood by us, really, until we began getting some answers. And the cost of treatment? He continues to work so hard to support us all, and provide me with all the medicine and supplements I need to hopefully get better.

And I have improved.

And my newly reignited career plans continue to ask him to provide, with the promise that in a few years, he can retire, and I can provide for our materialistic needs, and he can have a little land, with a garden, a few chickens, maybe some rabbits, and he’s throwing the idea around of having a cow and a few hogs? *shakes head*

I want to be able to say thank you. Thank you for taking care of me when I was sick, thank you for tolerating my sometimes cranky self, thank you for supporting my academic and career goals. I want to be able to give him a quieter life, and I want him to know that I will always be around for him, the way he has for me. But until that day, I do my best to remember to show gratitude whenever it strikes me.

Now excuse me, I have a phone call to make, to tell the man I love exactly how much I love him.

All in My Head? I wish.

(Warning: some bad language ahead)

I had a few doctors who insisted this was all in my head.

And that bothers me to NO END because first, they weren’t listening to a word I was saying about my health and life before I got sick, and second, because if they paid even the least bit attention to my personality, they would have realized that I would rather be in denial about being sick than actually admit to being sick.

Even if it was just a cold.

I’m the type that thought I could mostly will this shit away.

So when my health really began to deteriorate, I was already telling myself that it was “in my head,” that I just need more sunshine, a brisk walk, a little less sugar and extra veggies. So much so that by the time I saw those docs, I was at a loss because I had already tried to change what was within my power to change.

Even now, I continue to deny my illness. I continue to insist I’m getting better, even though it’s more likely that I’ve stagnated. To this day, I take my meds, I eat healthy, I try to get outside for a walk and do all the things that go along with being a mother and a wife: laundry, shopping, catching a movie with my daughter, visit with friends, celebrate holidays and birthdays like I always did…

So when I wake up, like I did today, and I feel dizzy and drunk and the room is spinning, I figure I just need some breakfast. Maybe add something sweet to my breakfast like an apple to keep my blood sugar up. Because I refuse to believe it’s the Lyme disease.

Even now, as I sit here, still dizzy, despite the breakfast and the apple, I’m having a little coffee, STILL hoping it’s something OTHER than the Lyme disease. Because in my head I’m going, “nah, I just need a little caffeine, I’ll be fiiiiiiiine.”

You see, I have shit that HAS to get done today. I’ve got studying to do and a paper to write, a psych project to finish up, and I start the nursing program in August and THIS CANNOT BE LYME BECAUSE IF IT IS, HOW WILL I GET THROUGH CLASSES?

So doc, when you tell me it’s all in my head, it’s not. I’ve already been there.

But just in case, I’m going to take a shower, because that might help, since the coffee hasn’t.

The curse of the over achiever…

I hate days like today. Days where I feel so sick I can barely manage to get off the couch just to graze so I can take my meds and maybe visit the bathroom. Days like this, there it’s not until 4 in the afternoon I get into the shower, and then linger, letting the hot water run over my face in rivulets, over my shoulders and down my body, all the while I’m wishing that my pain and fatigue will pool at my feet with the running water and go with it down the drain.

I’m never that lucky.

As most other Lyme patients, I have a very persnickety digestive system. I feel like I’m running at my best (which isn’t what “my best” was almost 5 years ago) when I follow a Paleo diet. Gluten, I know for certain, is an arch enemy, and at the very least I need to be gluten free. Apparently, watermelon is a no-no, too. Yesterday, somehow, I ingested both gluten (accidently) and watermelon (on purpose) and I’ve been paying the price all day today.

My day started off by me sleeping in until 9am, even after being in bed by 11ish last night. I felt drunk and hung over, and eventually the belly cramps started. My tummy is squawking at me as I write this, but if I can at least get this done, I’ll consider it a small achievement.

But there was so much more that had to be done today.

There’s that Ethics paper that I need to write.

And that Developmental Psych project that is almost finished and calling my name.

Plus the homework that just needs to get done to keep up with classes.

And oh! What about my family and household responsibilities? I was supposed to go grocery shopping today. It didn’t happen. I managed to get the sheets cleaned, though, so that will be comforting when I slip between the covers tonight.

I know I’m complaining, but I really do appreciate he blessings I do have, like a husband and a teenage daughter that pitch in when I have days like these. My daughter did some light housecleaning for me, and kept the sink empty from dishes, and hubby brought home dinner for everyone. (Having a husband who owns his own restaurant comes in handy.) I just hate when entire days get wasted. It usually means that I eventually have to play catch up when I’m feeling a little better, and then I have to be careful not to overdo it, otherwise I just find myself over extended and back on the couch.

I’ve always been a bit of an “over achiever.” I rarely do anything in moderation, and I used to be a hopeless perfectionist. Age mellowed me out a bit, but when I have days like this, where I’m fighting just to stay coherent and awake, and I feel like I’ve let myself and my family down. There’s nothing worse that the over achiever that feels like she has achieved nothing.