A little light and its shadow

Instead of only talking about my lyme treatment, I thought I'd share a bit about what its like to do things when you're this sick.  This weekend some friends of ours got married.  I've been looking forward to getting out and seeing people for a good month, planning things out so I wouldn't be overextended come the actual date. 

Festivities started with a bachelorette party on Thursday.  Plans were to go to a shooting range, have dinner and then go out to a strip club.  I had already decided to skip the shooting range because it would have been too loud for me to enjoy.  I planned on joining up with the group for dinner, and play it by ear for how late I'd be out.  It was going to be good enough to even just go out to dinner.

That day came and I was feeling feverish and wobbly/weak.  When it was time for supper, and I realized I wasn't feeling well enough to make food for my family, I had to accept that I was too sick to go out too.  I was pretty irritated and disappointed, but I knew that if I had gone out, I would have been VERY miserable and the evening wouldn't have been enjoyable.

The day of the wedding came and I decided that I was going to get ready in stages, so that there would be plenty of time for me to recover between tasks.  I washed my hair in the morning, and it left my limbs feeling like jello.  Later, I got dressed, and then I realized that I was going to lay down before going and I wasn't going to rest in my dress!  Jared was an usher, so he had to be there early, so Lizzie and I came later, but it also meant that I had to get both her and I ready by myself.

I got up from my rest early and got dressed and did my hair.  I woke her up from her nap and got her in her dress and brushed her hair.  We put on makeup together and then it was time to go.  I had paced myself well!  I was proud.  THen we couldn't find Lizzie's shoes.  In the process of looking for them, I left the door to the porch open, and the cat went out there.  So then we had to get her back in the house too!  I did not budget energy for these things!  When we got to the car, I was exhausted.

I finally got a handicapped parking tag and I was SOOOOOOOOO thankful to have it!  I was able to park right by the door instead of having to walk through the entire lot to get into the door of the building.  It really saved me.  As it was, I was moving pretty dang slow by the time we got to our seats.  It was good to see friends, but it was rather embarrassing to hobble past them all with my cane at an agonizing pace.  Nobody gave me funny looks or anything, but my mind came up with all kinds of not very nice things that I thought they were thinking about me.  I'm still learning how to stop doing that, and its really tough.

The ceremony was beautiful and so were the brides.  Afterwards, we walked down a long corridor to where the reception was held.  Again, I was moving like a turtle stuck in molasses in January.  I always walk at the very edge of halls and stuff when I'm moving slow so that people can pass me.  Normally I feel good about it - like I'm being polite and considerate for those around me.  This time it felt painful as the people I used to keep up with in my prime passed me by.

We got to the reception room and the first thing I looked for was a chair.  Found one over in the corner and plopped down to catch my breath.  They had a mirror ball going and every few seconds I got a flash in my eyes.  It was painful.  So, I dug out my sunglasses, deciding to look like a freak instead of getting a migraine.  Although, it *just* occurred to me - my husband looks cool in his sunglasses, even if its indoors, so I probably looked like a glamour queen with a hangover in mine, not a freak (those damn negative voices!).  Once someone came over and stood between me and the mirror ball, I took the sunglasses off.

There were a number of times when I felt left out because everyone was standing  and talking, and I needed to sit.  Its really hard to include someone in a conversation who's face isn't at the same level as the rest of the people! Yes, many of my friends came over and talked to me, told me how good it was to see me out and that they missed me.  I was very grateful that I wasn't in fact invisible over in the corner.

I know it sounds like all I'm doing is complaining.  But its more sharing the differences of my reality.  And yeah, my reality isn't all fun and roses.  Regardless, I had the best time that I've had in a LONG time!

The food was great, dessert was INCREDIBLE.  I haven't enjoyed cheesecake that much in a LONG time (I'm on a low carb diet).  I savored every bite and cataloged it for later.  In that moment I was in heaven!  It was so neat watching Lizzie dance like a maniac, and watch her charm nearly every person out onto the dance floor at one time or another.  She had a boy chasing her around, and it was rather cute.  All my friends loved her and had a lot of fun with her. 

I went onto the dance floor 2 or 3 times, maybe dancing a total of a minute through the night.  But I wiggled and grooved in my chair the rest of the time, wishing I could be out there with my girl and my friends. Had my body been able, I would have been dancing the whole night. I was half tempted to bring my chair onto the floor so I could dance with everyone anyway.  As much as I would have felt like a sore thumb, I'm guessing people would have gotten a kick out of it.

And you know, I bet that most of my reservations of bringing my gimp out in public have to do with my own poor self-esteem rather than what people are actually thinking.  This is something I should talk about more in therapy.  Its part of the whole feeling ashamed of my disabilities.

Regardless of all those negative things my mind was throwing at me, I focused on all the fun and the joy and novelty of the evening.  I got to see people I haven't seen in ages and I got to get out of the four walls of my house for something other than an appt.  I lived each moment to the fullest that I could, reveling in all of it.

I relived some of my memories yesterday while I was lying in bed nursing my migraine.  I also realized that all of my payback pain was from washing my hair!  My trapezius muscles were screaming from where they attach at the base of my skull all the way down to where they end at the middle back, and out to each shoulder.  While I'm relieved that there didn't seem to be a price for that much fun beyond the massive terrible headache, its really frustrating to know that something as simple as washing your hair causes that much pain and suffering.  But, as I was lying there trying to get away from the pain, I had a wonderful evening of events to visit again, and it was one of the easiest times I've had dealing with a migraine.

Knowing that I'm still able to get out and enjoy myself makes such a huge difference in my prison of daily life!  I trust that some day I'll be able to do it more often and with a need for less gimpage!  But hell, even if I'm this much of a gimp for the rest of my life, I will learn to embrace it and be thankful that there are things that help me.

Define "Tolerating"

I finally put in a call to my LLMD today about my symptoms and how I've been doing on the plaquenil.  She liked how I figured out to take it at suppertime so I can sleep through most of the yuck from it.  She also asked if I was tolerating it.  And I'm not sure.

Right about now, I've spent most of the last 24 hours in bed.  I laid down when Lizzie did in the afternoon and just haven't felt up to being up and responsible for anything.  I was up last night to eat supper and that's about it.  This morning I spent time in the living room in my chair watching Labyrinth with Lizzie for the first time, and then I went back to lay down.  I wasn't feeling well enough to stand in the kitchen long enough to make myself a breakfast shake or get my meds.  I got up again for lunch and to go to the bathroom and get drinks.  But I've been lying in bed, trying to remain entertained, yet resting.  And so far things on the computer have been interesting, but I feel like I need to rest my brain.  Sitting up in bed to give my body a different position while typing this entry is exhausting.

Perhaps its time to spend a few days with Grandma.  I don't have another appt until Thursday, so Lizzie and I could go up there and she could be entertained and taken care of well, and I could just lie there and rest.  And Jared can work and not have to do double duty.  I'll have to talk to everyone about that.  My only concern is the heat, how poorly I do in it and the sun and how there isn't good AC in the truck.  Maybe if we leave in the evening tonight it will be easier. 

Regarding tolerating, I asked the ladies on my chronic illness forum that I haunt ALLLLL the time, how they define it.  One said that it could be looked at as looking for "permission to stop treatment" vs "reassurance that its ok to continue".  As miserable as I am, at this point I'm still on the reassurance side.  Another said that she looks at tolerating something by seeing if she can still take care of herself and the animals that depend on her.  I'm just barely squeaking by on that one, but I can't really take care of the animals and Button.  Others said they define tolerating a med by the benefits of treatment outweighing the side effects.  This one got me thinking.....

In my case, the side effects are nausea, headaches, stomach pain, and sun sensitivity for the most part.  The results of treatment are killing the bugs.  Yet killing the bugs cause effects in and of itself.  I experience increased pain in my joints, flu-like aches, feverish feeling, swollen, painful lymph nodes and exhaustion and increased brain fog.  Add all of that up and its pretty miserable. 

But do I want to continue to let the Borellia have free reign over my body?  Do I want to continue to deteriorate and become more disabled than I already am?  I give a resounding HELL NO!!!!!

It reminds me a lot of cancer.  Now granted, I haven't ever had it, so I don't really *know* what its like, but I do know a few things.  The chemo drugs are toxic and cause some pretty yucky side effects.  Yet when you take chemo drugs, they don't discriminate and only kill the cancer cells.  Every cell that is dividing in your body dies.  And this makes you really sick too.  Its a double whammy.  Its not the drugs themselves that cause your hair to fall out, its the cells in your hair follicles dying.  Its a result of the treatment, not a side effect from the drugs.

How do you choose when treatment results land you in bed and unable to care for your family?  I guess ultimately, cancer patients know that if they don't treat the cancer, they'll die.  Is lyme disease a fatal one?  Not immediately, no.  But the lyme buggers can and DO cause permanent damage to your heart and nerves and joints if they're left to do their thing for too long.  If they dig into the wrong places in your body, the damage they leave can eventually kill you, a very long, agonizing time later.

So I'm at the point where I'm seeing the choice I have to make.  I'm seeing what the forest I have to travel through looks like.  Its dark and rather scary.  But if I want my life to improve, I have to keep going.

Goodbye amoxicillin!

Thankfully, today is the last day of amoxicillin.  I'm hoping that I'll start to feel a little better with less abx on board.  The sad thing is that this is just the beginning. I get a few weeks' 'break', that is, if you call taking 500 mg of azithromycin for a month a break, and then we'll be adding more stuff in and perhaps increasing the zith.  UGH!!!

I've been really exhausted and sore.  My armpits have been really tender and wearing a bra is painful.  No, I don't wear underwires, either.  I discovered today that my rice filled hot pack feels nice on it.  Doesn't completely take away the pain, but it is very soothing feeling.

Yesterday I had a bunch of gastric effects.  Noticeable pain and a little diarrhea.  Today it was better.  I find it interesting how each day has been different.

I'm trying to figure out what to do when I'm too tired to be up and around, yet not tired enough to fall asleep.  I tried listening to an audiobook and podcast, but I must have been in the wrong mood or didn't get the right ones or something cuz they didn't really do much for me and were almost irritating. Perhaps today would have been a better day to try and fall asleep.

I did figure out how to knit lying down though!  I need an extra pillow under my head and a one under each elbow.  Maybe I'll be able to do more of that.

I'm thinking of making list and basket or something of things I'll need when I need to be in bed.

Water
snacks
knitting
books
iPhone/iPad
laptop
cat and dog

Its really nice how my pets like to hang around me.  Very comforting.  They each have their own energy and it actually benefits me.  If I'm in a lot of pain and can touch both Daisy and Shane (like with a hand and foot), I feel HUGE improvements.  Daisy has a very sweet and healing, nurturing sort of energy and Shane is very grounding.  And Pif is really starting to spend a lot of time with me when I'm in bed.  I find it awesome and sweet!  I've really missed having cats and am SO glad that Jared thought to finally ask his friends who breed bengals if they had a cat that would fit our situation. He told me we'd be getting one of their retired breeders on my birthday! He really doesn't have much of an allergic reaction to her at all.  I'm so blessed!!  I'm still trying to figure out exactly what kind of energy Pif adds to the mix, but I'm leaning towards energized and vibrant.

Reality has been hitting me and its very daunting.  I've just had 5 days of treatment and this may have to go on for YEARS!  I haven't been able to empty or fill the dishwasher in one sweep!  There's just so many things that are hard for me to accept.  To write it all out is just too depressing.  I'm trying to focus on the positives and remain hopeful and upbeat.  But I imagine I'll be going through even darker times than this.

I feel as if I need to let go of ALLLLL expectations and just do what I can and not have to try and live up to anything.  No housework, no mothering, no wifeing, no socializing.  Just existing.  And that's a huge challenge, maybe even moreso than the fight within my body.  I have responsibilities!  I can't just drop them like a hot potato!  And none of those things are things that are disposable, yanno?  I CAN'T just ignore my 3 year old!  And the house needs to have at least a certain level of cleanliness to live in it comfortably.  I can't ignore my husband's needs, and not doing anything for my own enjoyment would lead to bad things too.

Its scary.

But you have to go THROUGH the forest to get out of it, right?  There WILL be good days, glimmers of light.  And the end.  I don't know what the path looks like yet and where the final destination will be.