Being A Human Pincushion (part II)

 Once upon a time I said I probably wouldn’t mind being a human pincushion for a day, for a second time, if all the right ducks were in the right row. That almost happened this year, almost, when my PM&R’s office called needing to reschedule my appointment.

But with the sports medicine specialist away for most of the month (it’s conference season after all) it just wasn’t going to happen.

Instead I ended up going to Boston twice in a small window of time, without much time to spare, naturally.

On the plus side both appointments were resident free so that was pretty great, considering.

Although the appointments were over a week apart I still felt like a human pincushion, and not in a practical way that benefits me in the best way possible.

But it’s done, I’m hoping to get at least 6 months out of this round, although a year would be more ideal.

Never again would be magical. However, I know not to do that to myself.

So, I’ve set my sights on the 6-month mark.

The bruising and soreness has disappeared and I’ve returned to my regular activities, and then some.

I’ve made the appointments, just in case, but hope to be able to reschedule them for a later date.

Being a human pincushion isn’t an ideal situation but I think I’m beginning to come to terms with it and all that it entails, like scheduling appointments in a timely manner, rather than waiting until I’m “past due” and begging to be put on the schedule.

Although I’ve been a “professional patient” for decades I’m still learning the tricks of the trade.

Being A Human Pincushion

I probably should’ve written this post closer to when these events actually happened, but, life.

I’ve made no secret that I’m not a fan of in office medical procedures, especially those that can and often are performed in an OR. It’s not due to fear of needles, but rather a dislike for the planning and upkeep involved. Call me crazy, and most people have, but I prefer a longer recovery for a “one and done” thing. Plus, I’m not good with keeping track of things that need to be regularly scheduled. If it doesn’t need to happen at least once a week or twice a year it just escapes me.

So imagine how happy I was to have 2 in office procedures scheduled for one day. It helps in the planning in one aspect but not in others.

I’ve accepted the idea that Botox injections once a year, with a few rounds of trigger point injections during the year, works for me. I’m still not a big fan but I’ve accepted it until another plan actually works.

I have yet to fully accept that the best course of treatment for lingering muscle strain is a regularly scheduled cortisone injection, even though I know every other alternative is less than preferable. The doctor in charge of managing my strain knows my concerns, so much so that she addresses them at each visit taking things on a case by case basis even though I think we’ve reached the point of a sustainable treatment plan.

I didn’t want to get Botox and Cortisone on the same day, but at the same time I just wanted to get it over with.

The Botox came first mostly because I know that 99% of the time the doctor in charge of that isn’t late. So there was little chance that the day would get backed up, but I did leave my mom in the waiting room with everyone’s contact information, just in case.

The appointment itself went OK aside from the fact that there’s another new medical assistant who asked me if I had fallen in the last 3 months. My guess is she’s not aware of the fact that people with CP can’t go 3 days without falling never mind 3 months.

I talked my way out of anesthetic and there were no residents hanging around so it was a pleasant appointment overall. Trigger point injections are scheduled for about a month from now but that can be moved up or back depending on how I’m feeling.

Then I was off to hospital #2 for the cortisone.

I actually don’t mind these kinds of appointments either the waiting and procedure prep (which is really just more waiting) is far from my favorite, especially when they ask you to arrive at least 15-20 minutes prior to your appointment. It’s times like this when I would actually bring something to read or other work, if it wasn’t for the need for a sterile environment. I realize that bringing a book probably won’t make a difference but I’d rather not take the chance with a very large needle going very close to my femoral artery, any and all chances for infection and/or bleeding need to be kept at a minimum.

What I neglected to realize when scheduling these appointments was that I would probably be jumpier than usual on the second round of sticks. I know there’s a high likelihood as is that my muscles may jump at the exact moment I need to stay completely still.

My PM&R knows this and knows just how to pin me down & stick me with only 2 hands at his disposal, although he could call someone else in he doesn’t need to.

The sports medicine staff has been more than accommodating when I tell them they’re going to have to pin me down even after anesthetic has taken effect.

As a result of my extra jumpiness I was given more anesthetic prior to the cortisone injection. So much so that I couldn’t feel a thing from my waist to my knee. It came to me pretty quickly that I was not told to bring crutches or my wheelchair to the appointment and I would need something to just get off the table, never mind put my shoes on, walk back down the hall, and then walk out to the car.

Thankfully I did have my wheelchair in the car so while I was resting for the mandatory 10-15 minutes I told my mom to go get the wheelchair and bring it in, because this time they were not going to let me go without using some assistive device.

I had scheduled a follow up in case I wasn’t feeling too great but that day has come and gone so I’ll schedule another appointment when I feel I need it, which will probably come in a few months.

At the end of the day, although it was long and got increasingly uncomfortable as the day wore on, I probably would be a “pincushion for the day” again. I would come better prepared however, like having one time use icepacks in the car, or asking for an extra when leaving my appointments, and having some OTC painkillers on standby.

Needles, And Tape, And Meds, Oh My!

Remember when I wrote about getting Botox and trigger point injections. Well last week I went for a follow up and follow up trigger point injections.

Yes, I willing went to get stuck with needles at the full digression of a medical professional.

No, I am not insane. I promise.

So I had trigger point injections (no Botox).

It’s never the most pleasant experience but if you get the desired results it’s worth it, even this time which was highly unlike all the other clinic visits (but I’ll spare you the details).

We also talked about the possibility of changing up my meds, for muscle management since I’m finding that I’ve becoming more “loopy, droopy, and stupid” but I’m not getting much in terms of less tightness and spasms in my legs. I guess it is possible to build up a tolerance (which I could’ve guessed but I wish someone had come out & said it anyway).

The problem is every medication has its drawbacks and there’s no guarantee that any of them will work any better. In fact I wouldn’t be surprised if none of them work well for me, at all. I mean, anyone who saw me during the short time I took B@clofen calls it “the crazy stroke drug.”

A few weeks ago I got into a discussion at PT that ended with my ankle being taped up, for therapeutic purposes, so I snapped a few pictures for the appointment for a visual, because my brain is fried.

He supports the tapping since it can have really great benefits. I’m not sure how I feel about it long term but we’ll see how things go. Knowing how my body has been the last few years, who knows?

Once we figured out how long the effects of the trigger point injections lasted a plan was made and out came the needles (well needle).

Normally I go sans any anesthetic, because I’m all badass like that.

Actually it’s more like I hate cold sprays or creams and get post-anesthetic headaches like it was my job (that last part I had forgotten about until I was half way home and the car spun about 180 degrees, thankfully not literally).

And I am a badass like that.

But my doctor wanted to make sure my muscles were “jumpy” because he was in a trigger point and not because he stuck a needle in my leg. So I sucked it up and took the spray, begrudgingly.

A few minutes later it was done and I was out the door, all except for the fact that one of my socks looked like it belonged to Curt Schilling.

 

Apparently I was going to be a bleeder too; again, not my usual M.O, but it’s not like I can control it.

The bruising is more than usual as well but that’s always an unknown.

The plan from here is to go back in the fall for follow up and the possibility of Botox and/or Trigger Point injections then.

All About That Botox

I’m not the biggest fan of Botox injections. It’s not because of the needles or even the insurance battles, although neither of those helps matters.

For me, Botox is like a popular movie or fad; it’s never lived up to the praise or expectations.

Thankfully my doctor feels the same way, at least in terms of using Botox as a treatment option for me.

However last year we agreed (he suggested while I rolled my eyes) to try another round of Botox injections. Maybe I didn’t need them on a regular basis but once a year would be good enough to keep the potential for more serious issues at bay.

I thought I had a “get out of jail free card” in the form of scheduling issues which just wouldn’t work with insurance requirements. However since my insurance had changed in the last year there were no such requirements to coordinate with my schedule.

Less than 5 minutes later I was getting Botox injections. I went with it, but I kept my expectations low, as in bargain basement prices sort of low.

But it worked, if we’re talking about if the intended goals were met.

I sat through 3 hours of class for 5 days straight with minimal discomfort. Because who can sit that long in class and be perfectly content for the entire thing? But I think we can blame lack of sleep for the discomfort, because who can be perfectly content when overtired?

I kept up with my classmates and managed to stay, fairly, well rested without much difficulty. And honestly that last part can be difficult to achieve even during my regular schedule, or at least as regular as my schedule gets.

So we agreed to revisit the “summer Botox only” once summer got closer.

Because my goals for summer are a lot more direct, in a sense, than during the rest of the year. And if something goes “less than ideal” then I have a more ideal compensation plan (aka long periods of sitting).

Knowing my fondness for Botox injections I also inquired about doing trigger point injections as well (because my track record with those is great too so why not ask for more unpredictable factors that just might not work out so well).

Although it should be noted that sometimes an injection of Botox “doubles” as a trigger point injection if the point of injection for Botox is in a trigger point, or something like that.

I hate the maintenance that Botox requires, however I’m hating having trigger points just as much so yes I did ask to be stuck with a fairly large (for the needle-phobic, anyway) needle more.

However I think if we were to rid my legs of every trigger point at one time I probably wouldn’t be able to stand up, but don’t quote me on that one (because anything is possible, or not).

Things have worked pretty well this summer too.

The bigger problem was having a morning class & an afternoon class, both requiring lengthy and heavy reading. The more tired I got, the more uncomfortable I got, which is pretty par for the course regardless of the situation.

People often ask me what I think about Botox injections as a treatment option for managing Cerebral Palsy and I always struggle with how to answer without worrying that I’ll sway someone’s opinion (especially if they’re acting on behalf of someone else). Botox works great for some people and that’s great for them. But for me it’s always a roll of the dice, at least we’ve found one situation when it can be beneficial.