Change

First off, my son is recovering wonderfully from his hernia surgery. Everything went smoothly, and he has bounced back in record time. It was a long day, but it went as well as it possibly could have, and I’m so glad we were able to get it taken care of before we move and school starts.

The surgery is just one of so many milestones happening at the same time. The day before the procedure was his last day of summer camp – the last day going to the preschool he’s attended for three years. A few days before that was his last haircut at the place he’s been going to for four years – since his very first haircut. We bought his backpack and lunch box for kindergarten. We’ve been helping him go through his room and get rid of toys, books, and clothes that he’s outgrown in preparation for moving. Change, change, change.

I taught my last music class here in our current town. I always planned to continue teaching when we moved to the city, but plans have changed. I’m so sad about it, but I know taking a break from teaching is for the best. We move in a week. My son starts kindergarten right after. The following week should be the beginning of my twice weekly antibiotic injections. Between helping my son adjust to kindergarten and city life, and starting a new, more intense treatment that will likely bring big herxheimer reactions, not to mention unpacking and setting up our new home, it just doesn’t make sense to add trying to teach in a new city, under a new director, with new families at the same time. I will miss teaching terribly, but I am confident I will get back to it one day. It is hard to let it go – a year ago, I had two jobs that I love, and now I have none. Big change.

Our apartment is in full moving mode. Boxes piling up. Things we don’t need or can’t use in the new place being donated or sold. New things that we’ll need coming in. More “lasts” on the horizon, and after that will be a sea of firsts! Change, change, change.

Time to turn and face the strange…

(Any excuse for Bowie. Always.)

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The world keeps turning

My boost in energy and reduced symptoms lasted for a few glorious days after my infusion! I started to slow down yesterday afternoon, and by this morning I was fully in crash mode. All day I have been mentally and physically exhausted. Everything aches, the neuropathy in my right limbs is nearing unbearable, and my face is drooping. I felt like I was walking through jello all morning until I got home from camp drop off and took a mega-nap. My right arm and leg are bothering me so much, it was hard to drive, and at dinner, I struggled to hold my fork. As I type this, my fingers are feeling cold inside.

The difference between me on Sunday, and me today is astounding. But more on that another time.

Today, I’m here to say that my son is having surgery tomorrow. Several weeks ago, we discovered that he has a hernia. It only protruded a couple of times, causing him pain, and then went back into place on its own, and hasn’t bothered him since. But a hernia it is, and the only way to repair a hernia is through surgery. Two years ago, he had his tonsils out, so we have some idea of what to expect. Putting your child under anesthesia is terrifying. We are fortunate the both the last time we did it, and this one, it is not an emergency situation, and is for a very routine procedure. However, it’s still scary. It is hard to send your child to an operating room. It is hard to wait in the waiting room, watching the minutes tick by. It is hard to see them in pain afterwards.

All of that stuff is hard when for a parent who is healthy. Tomorrow, I’m about to experience it in the midst of a “bad” stretch of Lyme life. Can’t say I’m looking forward to it. I know I’ll get through it on fumes, adrenaline, and Mama Bear strength. I know I’ll be more worried about him than me.

Life doesn’t stop for Lyme, that’s for sure.

Some good things happened!

About three weeks ago, I mentioned I would be starting regular nutrient infusions to help bolster my struggling immune system, and hopefully improve some of my symptoms. The infusions are not aimed at curing Lyme Disease, but at supporting my body through the all harsh medications it’s been subjected to, and hopefully alleviating some of my symptoms while I continue to fight to get better.

Ideally, these infusions would be weekly, but I live about an hour and a half’s drive from my doctor’s office, cannot drive myself to the office due to Lyme symptoms, and also: LIFE – it gets in the way sometimes!

I had only one infusion in July and it was right as I was getting over the Horrible Stomach Bug of 2015. It made me tired that day, as I was told it would, but I couldn’t report any other results. I had no concept of whether or not it made me feel any better Lyme symptom-wise because I was still completely beaten up from the stomach bug.

WELL, I am happy to report that I had another infusion yesterday…and I think it helped!

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Me, yesterday. Nutrient drunk.

I lounged in the recliner chair, listened to music on my headphones, and catnapped while the IV bag emptied into me. I was super foggy after, and napped all the way home, thanks to my lovely chauffeur/wife. 🙂 I spent the rest of the afternoon taking it easy in bed.

I had trouble sleeping last night, due to my usual neuropathy and joint pain (which is now nightly) in my right limbs, in addition to some weird pain in my left limbs for the first time ever. (Not cool, left side. Not cool.) Yet, today…

I feel pretty darn good! Wahooooooooooooooooo!

I spent most of my day outside in the summer heat, which is often enough to wear me out, and still had the energy and wherewithal to run a couple of errands! I wasn’t just sitting around outside either – I was working on a project with a friend. My wife, son, and I are moving from the south suburbs to Boston in a few weeks (Have I mentioned that here? Lyme Brain.), and my friend and I are refurbishing some items for the new place.

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Old lamp —> New lamp! Ooh, shiny!

I was even able to spend some time at the pool with my little guy after picking him up from camp.

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Poolside snackin’ and loungin’ with this cool dude

So I’m going to go ahead and say, Nutrient Infusion: Success! I guess these IVs might be worth the $100 out-of-pocket each after all.

P.S. For anyone on the edge of their seat (see what I did there?) waiting for news on the butt injections, they are not going to start until September, after we move. I do not need to risk a Mega Herxheimer when I am trying to pack and move house, thankyouverymuch.

Never a Dull Moment

Just as I was starting to feel pretty confident about starting IV antibiotics via port, I heard back from my doctor that she had conferred with the lead doctor, and they are recommending the injections instead. Ughhhhh. To address the travel issue, they recommended I look into having a visiting nurse come to my home to administer my twice weekly, slowly injected, bum shots.

Visiting nurses are now being researched, and I am making mental adjustments.

IV antibiotics do pose a greater risk of damage to internal organs. The injections do yield great results for some patients. Each option has its own benefits, risks, drawbacks, advantages, etc.

Pretty much, I just want to do whatever is going to work.