Fediterama

Take me out to the ballgame and I shall roast you over open coals.

Take me out to the  park and I shall strip you of all your unworthiness.

Buy me some peanuts and cracker jacks and I will see you unrelentingly to mercy's playground.

I don't care if you ever come back.

So I'll root, root, root for the whole team and if you succeed in dismay,

you'll be one,  two,  three parcels down from the rest, ole. |K

Clocks

If you have a life that you've chosen (or been stuck with),  there are challenges, ups and downs, good days and bad.  But, when  something different.  I think I'm talking about clocks.  This disease can be relapsing and remitting.  I don't mean daily fluctuations.  I mean a good year, a year or two lost.


Once the front door is breached, the demands are endless.  You know you only have 3 or four trips up and down the stairs a day, but someone can't find their soccer gear up there right now!  The husband has decided on his next project and gives you a list of things that must be done right now!  The toddler needs a dwink and has a poopy diaper right now!  The 1st grader can't find her markers in the rec room (another set of stairs) right now!  The plan was to go straight to the kitchen because dinner must be started right now!

Many people can sit and watch this endless process because apparently this is the normal they expect from you. Some of them with a charitable heart will take time out of their busy day to let you know they are thinking about you. Horrible people.  Truly, the worst.  I want to go on record as saying if there is not one person ion  the entire universe that will get in the trenches with me, I will quit. I will not care if the people in "need" and charity suffer and die with thew losdsd of my kind regards. tgher problem you see is that I do not walk this road alone, goodness and mercy follows me all the days of my life. Kindness and charity beseech me with all of their thanksgivings. Your I'll or great intent are so great to you that I take a part the bitter seeds of your loneliness and grant you my heart's fondest wish.

Every year, every season. Insatiable greedy little buggars. You're so beautiful. I wish that when I spastic on you, your feet shall shrivel. When I visit you, your hands will maim. I took a part a disposable razor and all you gave me was brine. Selfish. No mystery here. Don't call me.

Apples

 6-26-2024

Podcast, so awesome.

Mozart and associated revelry

Lyme Treatment Day 7 to 16: Denial ain't just a river in Egypt

As you may or may not surmise, when I reached day 7 of my Lyme Treatment Protocol, I failed to reach vertical status.  It took approximately 4 days to wade through the intense fatigue, air hunger and body scream to where I could handle being up and around for about 20 minutes at a time.  The next day saw another victory for the horizontal plane.  I was delighted to cycle through this several more times.

I rejoiced in the sheer visceral proof of the death of the spirochete.  I imagined a bloody battle inside my very being in which thousands of ugly, hairy germs (conjure the mucinex comercial) were screaming in agony and dying excruciating, well-deserved deaths.  My spirits rose.  I couldn't wait to be well enough to sit at my computer and share this with the world as I'm sure the image of me lying on the couch and panting with rosy cheeks is just awesomely heroic and inspiring.  The only thing completely puzzling to me was my husband's complete and utter withdrawal, his short, clipped responses to me.  I didn't understand his unwillingness to help me out with even a drink of water while the chores piled up and the children fended for themselves.

It's not that I was unfamiliar with this type of behavior.  This has been his standard response throughout our marriage when he couldn't deal with his anger toward me for being a "crazy hypochondriac."  It's just that I thought a diagnosis meant he could, you know, love me again.  It is ever my habit to fear the worst in the absence of affection.  I am a bit like a puppy dog in this respect.

[Before I go any further with this, be reassured that he and I are on the other side of this now.  I recently told a friend of mine that for the first time in about 10 years, my husband and I are getting along. *insert happy tail wag dance*]

Anyway,  there I was, watching him move farther away and waiting for him to let me have it.  Patiently waiting for the outpouring of stress and vehemence that is reserved only for the safe target centered on the foreheads of the ones we love most.   And while it's not really a secret that I married my husband because I am a sucker for kind hazel eyes and broad shoulders, it's worth noting that my shoulders are pretty sturdy as well. 

One of the things I had to accept early on, was that I could not physically make myself be the normal wife he needed and expected when he married me, that I had expected to be when we married.    I have not been a good partner to him in the most mundane ways.   My attempts to get out of the house and earn a little money generally end up increasing our financial burden.  I get sicker and go to the doctor more.  I can't follow through and initial investments don't yield return.  His stress level climbs, and his burden as the provider for our family is uneased and even increased by my need for good insurance and assistance with running the house coupled with the increasing knowlege that his deepening fatigue might be more than simply the stress of an incapacitated wife.

Add to this recipe a man who is generally reserved, was taught to take responsibility for his family and takes pride in self-sufficiency and you begin to see why he just can't handle talking to me.  It is impossible to unleash that kind of frustration without it whipping wildly about the room.  But since I am wise enough to know there is no way around it, I provoke him until he makes me cry.  He feels better.  I feel worse, but like I said, my shoulders are pretty sturdy, and I accepted this quite a few years ago.  My husband, on the other hand, has to accept it now. 

It took several days of me being horizontal and asking him what was wrong.  "Nothing."  Several days of him refusing to take me to the grocery store.  "I thought you said you were going later."  (I called my mom at 8 o'clock one night because we were out of diapers.  He would not budge and my mother who lives 20 minutes away came over to put the youngest to bed.)  He finally drove me to the store when we were out of milk, bread and everything else.  I was able to walk through the store at first, but still in denial, he asked me to get the sugar we had forgotten from another aisle.  I did it, but that was it.  I had to go to the car.  He finally cracked on the way home.

After it was all finished, the sentences that came out of his mouth were actually pretty funny.  These types of sentences usually are after the fact.  At the moment they are spoken, because everyone involved is so vulnerable and desperate for intimacy, these sentences cut to the quick.  They only ever have a fraction of the truth in them.  A moment of belief and reaction before reality catches up to the person holding on for dear life.  But, they're sort of like ripping off a band aid.  It stings really bright for a minute, but it can only really be skin deep.  The deep truth underneath is always that you love the heck out of them and you just want them to love you back.  You were just afraid they didn't.  Or couldn't.  Or wouldn't.  The truth is usually that you were just afraid. 

Survey:  Did you ever mess up a relationship because you mistook a flesh wound for indifference?

Lyme Treatment Day 5: Battery strength

Soccer Saturday.  Today was the first game day of the season.  We were late.  We are always late.  I almost had it timed right, but the middle child decided that the new shinguards (purchased because the old shin guards annoyed her) also annoyed her.  She had complained the old ones felt weird because they were too small, but now the new ones dug into her knee because they were too long.   I could see where the strap would rub.  So I offered, and she agreed to wear the old shin guards.  Of course, I couldn't actually remember where I had put the old shin guards.   Brain Fog.

Did I put them in the attic for her younger sister?  Were they in the bin to be sorted in my closet?  Down in the mud room?   I started to get nervous, because I knew this meant extra trips around the house.

You see, for the past year and a half I have studiously balanced rest periods, energy expenditure and food intake before trips into public in order to pass for a somewhat normal person.   On good days, I am pretty good at this.  On so-so days, I can muster enough for short trips, but that's all I accomplish.  On bad days, I stay home.  It took quite awhile to get the hang of this.  Many times, I ventured out only to need help pushing the cart or taking hours longer than normal to finish and needing two days to recover.  My batteries weren't fully charged when I left the house.

Last fall, I visited the Genetics Clinic at Johns Hopkins in Baltimore to see if there was an underlying genetic cause for my problems.  They were unable to diagnose me with anything specific, but said some things in my blood work were suspicious for Mitochondrial Disorder.  What I am beginning to understand about Lyme Disease is that the chronic infection damages mitochondria.  If you remember from high school biology, mitochondria are energy producing organelles in every cell in your body.  If your mitochondria are not working properly, periods without food and rest can literally drain your batteries causing an energy crisis. 

Back to the shin guards . . . Eventually, I remembered wanting to wash them before packing them away.  I figured I had a few years until they would be needed and had put off giving them a good soak.  There they were at the bottom of a pile of laundry. 

Today ended up in the so-so range, but luckily it was raining by the time we got to the older brother's game.  Not so lucky for a cold and wet older brother, but I got an extra rest period in the car to compensate for the frantic last-minute searching.  After all, no one expects you to have a 2-year-old out in a field on a cold, rainy day.  The middle child's game, that had required all that running around . . . was cancelled  (sigh). 

Survey:  How often do you push yourself past your low-battery warning?

Lyme Treatment Day 4: Positive Thinking

[Re-posted to satisfy the tidiness demand of my OCD! : ) ]

This morning it is very tempting to say, as I wash down my antibiotics,  that I am having a good day.  After all, I was out of bed before the older two got on the bus.  I was in the kitchen in time to wish them a good day.  I was able to find my son's precious Nintendo DS for him.  I got breakfast for myself and the toddler and unloaded and loaded the dishwasher by 8 am.  I took my pills on time.  I could use the power of positive thinking and say, "Look at all I have accomplished.  I am having a good day."  I will ignore the fact that my husband went to bed without me last night.  I will ignore the fact that I was awake most of the night.  I will ignore the fact that I have been awake since 5:30 am after a very poor night's sleep. 

Every morning, in that moment between asleep and awake, there is the briefest feeling of suspension.  There is a moment of nothing before my body becomes aware that it is under attack.  It takes a good hour, often longer, until my body recovers from this realization that all is not well.  Every day, this happens anew.  And this morning, it happened early enough that I recovered in time to move before breakfast.   It's very tempting to say, "I am having a good day."

Of course, I have now learned that when this happens in a Lyme patient, it points to one of the coinfections.  I think I mentioned it yesterday.  The "tired, but wired"  Babesiosis parasite. 

Last year, when I became very ill - ill enough to take everything off my schedule, even church - I would occasionally bump into people I knew on a "good day"  when I was rushing to get the grocery cart to the car before I crashed and lost the ability to push it.  Everyone knew I was ill, but I absolutely could not stop trying to explain that I was out and about because it was a "good day."  I felt desperate to let them know I wasn't "faking" to shirk responsibility and worship on Sunday morning.  I was desperate to keep their good opinion of me.  I was desperate to remain loved even though I had very little to give in return.

This has always been my problem.  In quiet moments, I think it is the gist of every problem.  We struggle.  We do more than we ought.  We strive to prove our worth.  We are bitter when we fail.  It's all a waste of talent and energy because love is free.  It costs nothing.  Perhaps, you've heard this before, but God waits for all of us.  Ask and you shall receive.

Positive thinking never really worked for me anyway.

Survey:  How often have you let yourself be loved with no obligation?

Lyme Treatment Day 4: Invisible

If you read the page on my blog entitled Filling the Rx, I may have left the wrong impression.  I'd like to take a moment and express how much I enjoy going to the pharmacies and laboratories, etc.  It may be hard to understand at first, but I'll try to explain. 

In these places, because they are a medical setting, people notice when you can't stand very long or that you need to touch a wall or a chair to stop swaying with the spinning.  Or that the dark circles under your eyes are a sign of something more than a few nights of missed sleep.   There is extra time when speech is difficult, and no one rolls their eyes or loses their temper because you forgot something or can't keep up.    Of course, there is a general consensus that this rule doesn't ever apply to neurologists!  But generally, there is a courteous respect that happens when you are seen for what your are:  Someone who struggles.

And then you go home.

It's sort of like the Harry Potter stories.  Only the pharmacy is Hogwart's School of Witchcraft and Wizardry where Harry can be his true self and home is the "real" world where muggles live.  I have literally experienced the sensation of jumping through the invisible portal, only it's on my porch instead of a train platform.    You go from a place where your courage and strength and perseverence are recognized even celebrated to a place where you are simply failing to do your job every day. 

I love my family.  I know they love me, but they have said the strangest things to me while I've been sick.  "You just need to get a job."  "You're just depressed, cheer up!"  "You just need more exercise."  "Why can't you handle anything?"  "Everybody gets tired sometimes."  "It's fine, I can see you just don't want to help me."  "You're too upset, are you getting your period?"  "Why can't you take care of the children, don't you love them?"  "Stop being so selfish." 

16 years have gone by without a diagnosis, with no authoritative or tangible proof it is my body that fails and not me.  16 years of not being seen for who I really am.  I live and learn on the other side of the barrier.  The place where muggles can't see you.  I keep trying to bring the ones I love with me, but you have to run to get through the invisible portal.  Muggles typically don't experience a sense of urgency for things they can't prove.  So, they stay put.

You don't need to be sick for this to happen.  Perhaps you talk to God, but they don't.  Maybe you've experienced terrible things, and they haven't.  Maybe you see trouble on the path ahead, but they walk anyway.  Families can be very odd places where the people that are seen everyday, aren't seen at all.

I'm sure the people I love have their own Hogwarts.   This knowlege helps me be very, very patient.  I only hope I am in the right place, on the right platform when they look for the door, so I can follow and run with them to the real world.

Survey:  When was the last time you were seen?  When was the last time you saw?  Matthew 10:7

Lyme Treatment Day 3: Meant to

There were multiple failures last night.  My husband, after calling from work in the afternoon, was on track to take the middle child to soccer practice.  I, dealing with the vertigo and nausea, did not go to the grocery store as planned.  Instead, I decided on spaghetti for dinner.  It is not in my Lyme Treatment diet plan, but I had all the ingredients.  I was in dreadful need of a shower, but decided to work on the blog pages for a bit instead.  When the time-to-make dinner alarm went off on my phone, (yes, I need to set a time-to-make-dinner alarm even though I am surrounded by clocks most of the time) I realized I couldn't grab my shower.  Although I had meant to, I had forgotten to defrost the hamburger for the sauce.  It would take much longer to get to the simmering-sauce, spaghetti-in-the-collandar stage.

I took the time to defrost the beef in the handy-dandy microwave, heated some olive oil and got the bright idea that I would actually use some of the garlic cloves that had been decorating my counter for quite some time.  When I bought the garlic, I thought I had a garlic press.  I had meant to, but forgotten to buy one on several repeat trips to the store.

I felt very official as I minced garlic with my knife.  I have a chopper, but I enjoyed the officially cooking feeling I had from handling the big chef knife.  I ignored the fact that I very nearly sliced my finger open several times, and I threw the garlic in the pot.  Although I had meant to, I had forgotten to turn down the burner.  The garlic immediately turned black, and a smoky, lingering mist permeated the air. 

Take two.  When I finally got to simmering pot, pasta at the ready stage, I realized it was now 5:40. Soccer Practice is at 6 pm.  I have not yet seen the husband.   I got his voice mail.  There is no cell service in spots near our house, so I assumed he was very close and called the middle child to eat her supper.  He finally called me back at 5:55.  Although he had meant to, he had forgotten to give me a call when there was an accident at work.  He had to work an hour longer than originally planned. 

My daughter had just finished a crying jag about how much her hips had hurt from the last soccer practice.  I looked at her.  I looked at the clock.  I looked at my hair and and while sitting firmly in my chair, decided there would be no soccer practice tonight.  I facebooked the coach.  I informed my daughter who then wailed that the first game is Saturday, and she's only had 2 practices.  I had meant to, but couldn't help my child succeed in life today, because I had forgotten to take a shower. 

My husband came home 45 minutes later, angry with me for being upset about it all.  But, we plopped down and ate our spaghetti.  I got the spins again worse than the afternoon.  After awhile, I decided there would be nothing else until I took a bath.  This was when my husband called out, "Your student is here!!"  I had meant to, but I had forgotten to call and cancel the French horn lesson I teach on Wednesday nights.  Although the spinning was slower, I wouldn't have been able to follow the music. 

My husband made apologies for me.  I started the water and let it all drift away.

The garlic fog in the kitchen, the steam fog of the bath, the brain fog in my head.

Survey: Do you really think you have more to be forgiven for than everyone else?

Lyme Treatment Day 2: Vertigo

This is the most debilitating symptom I have.  Sometimes it's not being able to walk a straight line or even in the general direction of my choosing.  Today, I'm having trouble keeping my head upright.  It feels like I'm slowly crashing into the earth.  The first bout of nausea hit just after I finished the am blog. 

I was typing.  And then I was on my hands and knees on the hard floor holding on to the chair in my office.  And you know, there is this cushion here.  A back cushion that no one uses, but it sits on this side chair in my office.  I don't know why I got it out of storage months ago.  It's really uncomfortable to actually sit on.  The children throw it on the floor.  I bend over and pick it up.  I had decided to put it in the give away pile more than once. 

But it happened to be on the floor, right next to where my knees had hit.  I couldn't lift my head to find it, but I felt it and put it under my knees.  And for the 20 or so minutes that I couldn't move out of grim determination to not vomit and waste those pills, I knew.  I knew in that moment, that this small object was there because He knew I would need it. 

Survey:  When did you know God was taking care of you?

Lyme Treatment Day 1: Obsessive Compulsive Disorder

You may find it hilarious to know that while I was learning the ins and outs of blogging on google.com for my brand new Lyme treatment blog on this Tuesday evening, I forgot to actually take the medicine I was blogging about.

I took Dose #2 50 minutes late, shortly after a 20 minute lecture from my husband telling me not to obsess about this blog thing the way I always obsess about new projects.  I asked him if there was something in particular he wanted me to do besides blog while I sit down on this, my first treatment day for Lyme Disease, a day I have long awaited.  Was he asking me to spend time with him?  He said no.  He just didn't want me to go overboard.  He was just trying to save me from missing out on life like all those other times I stayed up late doing something I found interesting.  Just like I always warn him when he watches too mutch tv.  I asked him if he thought that being musical director for a play or writing about my experiences or figuring out our financial plan for the next several years are the same as watching tv.  He said he didn't want to talk to me as I was obviously in a mood, and went to watch television. 

Don't get me wrong.  There were many years that I would have scraped and apologized and shaped up in response to comment like that.  I'm just too tired to not live in the real world anymore.  I prefer that my eggs be in many baskets, and I let God distribute the weight evenly.  What was that scripture about worry?  Today has enough of its own.  Listen, people will always try to pass their worry on to you, usually in the same sentence that they profess to love you.  Let them keep it.  I like my eggs scrambled anyway.

Incidentally, one of the coinfections Dr. Lyme Specialist talked to me about is called babesiosis.  It's a parasite that can cause sleeplessness and obsessive compulsive type problems.  "Tired, but wired."  My husband has a point, but he uses it as a spear instead of a flashlight.  One thing I've learned while watching people from my chair:  if you want to illuminate someone's heart, you have to beam at them.

Survey:  Have you ever thrown a spear because you forgot to recharge your batteries?

Lyme Treatment Day 1: Diet

Ok,  I took my morning doses of doxycycline, plaquenil and the one I can't remember right now.  I'd go look at the pill bottle, but that involves standing up.  So far so good.  I've been warned that I will experience Herxeimer reactions as the spirochete dies.  Apparently, the antibiotics only work when the bacteria divides.  So, depending on how many divide today, that's how I will feel.  I've also been told that I will complain of tummy upset from the doxycycline.  Maybe I'll do that next week.  I'm still on day 1 and feel pretty much the same as yesterday.

I did want to mention the diet.  The Lyme Specialist wants me to follow the Zone Diet by Dr. Sears.  Something about not feeding the spirochete.  I did very well the first few days.  It's very similar to the mediterranean diet, so I've had some very nice Eat, Pray, Love moments (Eat, Love, Pray??). However, I spent half the months grocery budget on all of this food last Thursday, and all I have left right now is cheese and half a stalk of romaine lettuce.  Oh and I have almonds, but I think I may be slightly allergic.  (At least this is what I am saying to myself today, because I will not, I repeat, will not be allergic to the antibiotics.)  Anyway, the only other bad thing about the diet was that we had a birthday party for my son on Sunday.  For this party, I made 3 cakes.  My husband brought huge boxes of potato chips home (He knows a guy...).  You see where this train of thought leads.  Stupid tick.

3 hours later.  It started to hit just before four pm.  I had decided to take a quick shower and dress before I cooked dinner, but I must have gotten too close to the bed.  It is now just after five and dinner will be out of a box.  I did manage to graduate to yesterday's clothes.  The third antibiotic is zithromax.

Survey:  Have you ever accused or been accused of an apparent lack of willpower?