Thursday's Tumbles and Stumbles ~ Botox Troubles

Today's "Thursday's Tumbles and Stumbles" has to do with the side effects of Botox injections. They are miserable! After the last round of my Botox series, I suffered through flu like symptoms without a fever for a couple of days. I thought that would be the worse I would experience, but I was wrong. It was only the beginning.

It started about the week after my shots on the 25th. My series was done on the 20th. I was in a therapy session with my OT. It was just a vague achy feeling. What I like to call my-rode-hard-and-the-day -after. If you've ever pushed yourself past your level of endurance, woke up the next morning, and everything causes you pain, that's it except I didn't. I had a hangover without touching a drop of liquor. Sounds totally unfair, doesn't it?

Don't get me wrong. The Botox injections were working. Where I was getting 15 degrees of motion prior to the series, I got 75% movement and it was still an early return. The next week I got 90% of normal range or at least everything at mid line. This was fantastic and if I had felt better I would have been happy.

But I didn't feel well. My bladder response, have to go urge, was three minutes. There was plenty of time to get my AFO and shoes on, and make it to the bathroom. The response time after Thanksgiving weekend dropped to three seconds. That isn't enough time to turn around good, or even get up from a chair before the urine was pouring past the pad, past my underwear, and down my legs soaking my pants as it went. Definite signs of a bladder infection for me. I called my GP and got a prescription for Macrobid, an antibiotic.

But my body aches continued and intensified. I kept telling myself that it was just a flare up of my Fibromyalgia. I wasn't running a fever so it seemed like a logical judgement. I took a pain pill each night because I can't care for my hubby if I take it during the day. My left (functioning side) arm all the way down to my fingers and my leg started with muscular spasms. Not as painful as a charlie horse, but just enough pain to make me stop and say ouch.

But, my hip and spine were the worst on my right
nonfunctioning side. I will remind you that I have rods in my lower back and an artificial hip on that side. It was like the muscles were trying to move the immobile objects.I mentioned in another blog how I have to squeeze my gluteal muscles to engage my hamstring to take a step. Except now that these muscles were in constant spasm, my gait was off and the Botox relaxing the muscles around my peronal nerve, walking across the room was a problem. Bending over to pick something up off the floor was like playing Russian Roulette with my balance.

Then the wheezing started. At first it was only in the morning, but progressed into all day thing. I was having to use my steroid inhaler twice a day instead of as needed for my allergies. I was developing a head cold too. It became increasingly difficult coughing and clearing my upper respiratory track. Not to mention, the stabbing pains running through my back and hip with each cough. The stuff I coughed up was normal colored.

All this caused my heart to race more than usual. Which in turn caused me to take more
medicine to slow my heart down. I was also even more tired than usual with the added nonstop exertion. I was swelling up faster than my Lasix could handle. By swelling I mean abdomen looks like I'm six months pregnant, leg (defunct, stroked side) has major bulges on either side of where the straps are, and even my fingers. Not as bad as when I'm in congestive heart failure but close. My daily naps became a twice a day effort to have enough energy to make it through the day with the things I had to do until bedtime. Even still, time and time again, sleep was often interrupted by coughing fits during the attempt.

Through it all. I never ran a fever. Puzzled, I ran a search for answers on my computer. I had no idea which of my doctors to call...heart, arthritis, GP, allergist, or neurologist? Of course this decision making process happened on a weekend, doesn't it always? But it gave me time to make the decision. All the searches came up flu, except there was no fever or maybe an allergic reaction. Well, my memory told me that so that narrowed the field down some.

I recalled some of the side effects to Botox so I researched it. (Ding, ding, ding) we had a winner. Every single thing that was going on was listed under side effects of Botox. So Monday I called my neurologist.  The nurse practitioner suggested an antihistamine, but checking my chart she realized that I was already on three (pills, nose spray, and eye drops). So now begins the wait until my appointment time next week.

I'm actually concerned that the Botox treatments will stop because of the side effects. Without Botox, I'm destined for a life of pain and spasticity. Nobody, meaning researchers, have found the cause or cure for spasticity. This scares me because it hampers me more than my obvious disabilities. I've dealt with chronic pain for most of my adult life, but it's nothing compared to the pain I feel with the spasticity. Yes, I spent months in the beginning waiting on the approval for Botox, but the spasticity is far worse than two years ago with more muscles involved. I wouldn't be facing months but years of it with no reprieve.

So that's my stumble for this week. My darling hubby's condition has stabilized once again, or at least nothing critically or disastrously wrong happened. Thank God! I've had enough to deal with. How has your week been?

Sunday Stroke Survivor ~ Inappropriate or Overkill Emotions

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I've talked about my inappropriate responses on this blog for over a year. It has a name that I haven't discussed yet. It's called Psuedobulbar Affect (PBA). You may have seen recent television commercials about it recently. Now you are meeting someone afflicted with it. It's not depression.

It's a side effects of my stroke. No, I'm not crazy for laughing for no apparent reason, or bursting into torrential sobs at someone saying "boo," or going ballistic with rage when you drop a pin. I just can't help myself and I have no control over it either. No I'm not exaggerating or taking an author's license.

Some of you may remember the blog about the one and only wedding I officiated since my stroke. For those who didn't get a chance to read it, it's here. Since my stroke, you won't find me without a box of tissues and my incontinence pads for this very reason.

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Everyone has something that tickles their funny bone. That's normal within the confines of the situation. People tear up at commercials or movies. That's normal too. Everyone has an instance where anger explodes for a just cause. That's normal too. What I'm talking about is no control and no outward event which triggers this response.

I can start crying for no apparent reason or laugh outrageously over something sad. Even if it is as image that I saw on television months ago of one of those starving children. All it takes is the picture to flutter through in my mind. The same thing goes with laughter and anger, or any emotional response. It is beyond appropriate to the extreme. I can laugh until I can't breathe and pee my pants. We used to joke about one of our daughters who would get so tickled that she always ran from the room saying, "I gotta pee!" Well I can't run nor have significant control of my bladder so I'll pee my panties.

My family and friends look at me with concern and ask if I'm okay. My usual response is an attempted nod of my head and a wave of my hand until I finally get control back. It can last several seconds or several minutes. That's why most of the events I go to revolve around family. I rarely go places surrounded by strangers because they will not understand what is going on. But I'm lucky, I have a huge family.

If it happens in public, I always have family or friends who will talk me down off the ledge. They will laughingly tell the truth to strangers, "She's okay. She's brain damaged." It gets some strange looks and people will sidle away with questionable looks and hope it's not catching. By the same token, I burst into tears at The Olive Garden one night because they ran out of what I wanted. It was like someone had told me my favorite dog had died. The poor waitress. Luckily that particular episode didn't last too long.

• Embarrassing? Oh yes! 
• Will it scar me for life? Nope because I realize it is part of my stroke affects me and not really me. It's no stranger than my AFO, cane, the way my arm won't move, or the way I speak. Although I will admit it is disconcerting to others. 
• Stand out in a crowd? Yep, I sure do more than my physical impairments. But then, I've always considered myself as a unique being in a crowd of dull people anyhow.
• Isn't there anything that can be done to fix this? Nope there isn't a cure. All they can do is prescribe drugs to ease the response. It doesn't stop it from happening. It's how my brain functions since the stroke.

Say hello to the new, and glorious me after a stroke. I was on Cymbalta before my stroke because of Fibromyalgia. Not depression. Now it seems that this same drug is used for PBA sufferers. It helps me keep control of my emotional outburst but not stop them entirely. There are many new drug therapies also. Welcome to my post stroke roller coaster- it's either a riot of laughter, crying in bucket loads, or exploding in indignant rage, but it's still me!

I refuse to hide under a rock.
I refuse to die.
I refuse to give up trying to be better.
I refuse to be ashamed of myself because of my circumstances.
Won't you join me?

Nothing is impossible with determination.