Sunday Stroke Survival: More After Effects of Baclofen Pump

Sigh! You'd think I'd catch a break every now and then from Murphy's Law. This post isn't one. I told you that the spasticity was back after my pump was removed in July. My arm slowly drew up into it's greater than 45 degree angle to my chest again. The spasticity pain levels, which for me, is constant with peak activity bordering on excruciating. The constant pain with it stationary is now a 5 out of 10 with spikes up to 7. Still it is still livable. I mean, I was much higher before the pump placement. I'm still managing to work around it with an occasional verbal ouch or grimace. So far, I haven't streamed tears in silent agony. But it's still early yet. Believe me I'm not looking forward to the progression. Hopefully, I can have a new one implanted before I hit that again before the end of the year. I'm crossing my fingers and toes.

Right foot spasticity

I haven't spoke about the spasticity in my foot and ankle, I don't think. But the spasticity has returned in that area too. It's a strange type of spasticity when I compare it to my arm. It has to have a trigger most times, like a weight bearing step before it really kicks in. While building up my stamina with walking, I noticed that the area where I used to get pressure sores was getting tender. But with a good night's rest, the foot would be good as new. My right foot without my AFO is as pictured except my big toe points towards the sky and all the other toes curl under.

Well, the spasticity in the foot ankle are putting up a serious fight with my AFO. I can't stand or walk more than an hour before my foot becomes rounded with swelling. This could also be because of the heart functions. But with the swelling, more pressure was exerted on the right side of my foot resulting in yet another pressure sore developing in the same old spot. So this week I've been dealing with it. It hasn't ruptured the skin yet and blown off the callus. For the last four days, it's just sore, gushy under the callus, and an angry red color. Not even eight hours being off my feet, sleeping with my leg elevated hasn't helped. I can barely walk more than ten steps without pain. Once those ten steps are reached and the pain starts and after that EVERY STEP is painful. Talk about putting a crimp in my style.

Usually, this lasts two days before the area becomes an ulcerated sore. Not that this isn't painful, it is but there's an ointment that helps the healing and deadens the pain somewhat. Still there is a treatment for healing the sore. In the current stage, it's basically stay off it. That's nearly impossible. I do have to go to the bathroom, get a drink every now and then, and eat. To do these things I have to walk. Sure Mel could and would help with some of these things. She has helped when I've asked her. She even remembered something I had forgotten (sort of). We started nightly warm foot soaks with Witch Hazel and Apple Cider Vinegar. Both have astringent/antifungal/antiseptic properties to combat the swelling, soften the callus, and disinfect the area. It can't hurt. Besides the warm tingling sensation feels good.

I have an appointment with my PCP tomorrow, if it hasn't ruptured or resolved by then, I'll have him lance and drain it. He may or may not do it. If he does, the ointment I have will work and it can begin the healing process. It usually takes less than a week for the pain to go away even though it's so much longer for it to heal totally. My options to prevent this from happening again are options that may not be possible for several months. A new AFO- this will be my 4th in 7 years.Foot Reconstruction surgery- ugh! more surgery that might have to wait or carry over until next year, Botox injections- done that, didn't work well, Baclofen pump- waiting to heal from last surgery, radioactivity, and whole body scan to see if it spread...cancer trumps all. I still have a rotor rooter procedure on my carotids.

It seems the more I get done the more things pile up behind it. But then again...

Nothing is impossible.

Sunday Stroke Survival: Time to Flip the Wardrobe

With the cooler days and nights, it's time to flip the wardrobe. Gone are the easy days of T-shirts and shorts which comprises the bulk of my dressing options for these north Georgia foothills. They are exchanged for sweaters, sweatshirts, and long pants.

This year in thinking of this change, I'm facing a new complication. Adult diapers, more exactly changing them. It's more complicated than with shorts which slide off and on easily over my AFO and shoes. With long pants, it mean taking off my shoes, sliding my pants off, changing my pull up, and repeating the process in reverse before leaving the bathroom. I'm basically getting halfway undressed and redressing every time I do this. The few times I've done this in the spring and summer months showed me it's going to be a long, hard winter. Sure you can rip the sides to get out of them easy enough to do with two functioning hands, but more difficult with only one. It still doesn't alleviate having to undress to put on the clean one.

I've been researching patterns to make durable options like I did with the pads.  Unlike the pads where I could trace the disposable pad I liked the best, full "panties" are different and I'd need a pattern that don't come cheap.  Then comes the problem of size. While regular underwear patterns patterns go by waist size, while my normal waist size is is spot on a size 7, there are extra seam allowances for the snapping portions. several small elastic placements at the waist to hold up a wet diaper. It's not like sewing regular panties because of the absorbent padding makes for extra bulk. It'll take a lot of elastic work to accomplish.

 Sewing elastic onto fabric with two functioning hands is easy. I've just got to figure out a way to do it with one hand. It may be as simple as using a dozen pins the maintain the stretch while sewing and a loop at the back of the sewing machine to hold the fabric straight while sewing or a  lot more complicated. I honestly haven't tried to do anything but flat, straight stitches yet.

I've already know how to attach the snaps through trial and errors in making my own pads. So that won't be a problem. That was a challenge and a half when I was trying to figure out how to do it.

Currently, I'm roughly going through a case of disposable diapers in a month. That's 54 of them to the tune of $22.50. That's about 12 per week. At $0.41 a piece, it's a decent price, but I'm trying for the ease of changing them without having to undress and redress each time. The cost difference will eventually save me money in the long run. The same was true for the chucks pads I use to protect the mattress or even the pads. Yes, I could buy these ready made, but they are cost prohibitive or it would take longer to reach a break even point.

But then on the other hand rethinking this, I'd go through acrobatic feats of wonder trying to do up all the snaps or Velcro with each change. It's a no win scenario for 6 months out of a year all to keep from undressing during the cold parts of fall and winter. I guess I grin and literally bare it, quite literally, until I get my somewhat bladder control back. Sigh!  This too is living post stroke.

Nothing is impossible.

Sunday Stroke Survival: Incontinence? Nope. It's Worse!

When you talk about incontinence, you mainly think about the bladder. When you talk about bowel incontinence, it's something else entirely. I don't have this problem except in cases of diarrhea. But even the "norms" have a control issue with this, don't they? During these times, even they wish they had diapers to save wear and tear of their clothes, and embarrassment of accidents. But I'm already in them.

I had a incident this past weekend that caused me some real concern. Of course it happened over the weekend, it's an addendum to the old Murphy's Law. If something happens when you need your PCP, it'll happen on a weekend, holiday, or night when his/her office is closed. Then, you you have to weigh your options under is it bad enough to warrant an ER visit.

Now being a former emergency medical professional, I weigh this differently than most people. It's more of a question of "will it kill me if I wait until Monday?" I don't use the ER frivolously at any time after normal business hours. Things like a cut that needs stitches to close with bleeding I can't control by other means, broken bones besides fingers and toes, or true medical emergencies like heart attack or a stroke...all of these require emergency services.

 (this is gross, but true)
The event of the weekend just barely fell in both category. I decided to wait until Monday. As is my usual habit, my bowels decided to do it's weekly or biweekly purge...slight constipation (hard stone like bowel movement), followed by a couple of normal movements, and ending with a couple of really loose movements. This is not true diarrhea, but diarrhea type movements as a way to finish purging my bowels.

Except this time was different. By the time I reached by two loose stool movements there was blood tinged mucous. The cramping (I now feel it just under my rib cage in my back) didn't stop. This was highly unusual. After I walked the bathroom and sit on the commode, the cramping got so bad I vagaled. (profuse sweating, dizziness, low BP, hot flash, a high heart rate). Instead of the expected bowel movement I passed huge bloody mucous blobs. The bloody parts were bright red which told me it was a rectal vein.

This continued through the night. By Saturday, I couldn't pass gas without spewing blood. If it got any worse, I'd go to the ER otherwise I'd wait until Monday to see my PCP. By Saturday evening, the mucousy blood movements stopped, but were replaced by blood clots. So whatever ruptured inside was trying to heal in spite of my blood thinners. When you are on blood thinners, you can expect to bleed more heavily than normal. I was thinking that was the case here.

By Sunday evening, I had two incidents of passing clots and it finally stopped. All during this time I ate and drank normally. I applied witch hazel patches to my anal area to shrink whatever was it was causing the bleeding. So, it wasn't like I wasn't doing nothing. At no time did the bleeding turn darker, like an upper GI bleed, nor more profuse other than I described.

Caveat here, I am a trained emergency medical professional. I do know when the abnormal turns critical and warrants further intervention of others. If you are not, by all means, go to the ER.At times, the thought of going through my mind and I would have if the symptoms gotten worse than what I experienced, or hadn't slowed, or if the amount of blood was greater than a monthly menstrual cycle. I would definitely carried my unhappy hinny to the hospital, I'm not stupid. I just don't panic in "emergency" type situations. I observe and evaluate first as I was taught.

I know from experience that the ER would have done a wait and observe the progress with a possible admission for the weekend. With a cleansing ritual to prepare for a scope or colonoscopy for the regular work week. Been there, done that, and don't want to go through that again. The only conclusion the internist could make after that fact was that the area in question was healed or healing on it's own and ordered a stool softener for a week. I've got plenty of stool softeners here after the surgeries of spring and summer if I need it.

By using prior knowledge, I saved myself a ER visit, possible admission, a colonoscopy and a bunch sheer aggravation of wasted money. But yes, I will appraise my PCP about this when I see him next week.

Nothing is impossible.