Sunday Stroke Survival: Waiting and Waiting Again

 

I'm aggravated. I often joke how God let my stroke happen to teach me patience, but no matter how true that statement is, it's still a work in progress for me almost 9 years later. I'm still waiting on Hanger to get back to me with news on my AFO. I'm hobbling around in my ill fitted brace and a broken foot. I can't stand longer than thirty minutes without the swelling of my foot to be unbearably painful. I can only walk short distances (50 ft) because the articulating ankle and the huge (2") girth distance my leg and the brace causes my foot and leg to rotate within the brace aggravating my pressure sore on the bottom of my foot again. 

Luckily it's winter and it's basically our "down time" for the homestead. So I don't have to tend a garden, critters, nor orchard. This will change in two months. I've called and left message to no call backs or been told "No news yet." 

Meanwhile, my Botox is wearing down so my therapist is getting less extension and having to work harder to get it. Even with dry needling, there's less carryover effects. But this doom and gloom report will be over with come the second week in March when I get the new series of Botox injections (plus a week before it kicks in). The good news is that they haven't had to go up on the dose yet. I've still got some range of motion in my shoulder so my pain levels are manageable. I truly wish my Baclofen pump hadn't been removed and COVID had never happened to delay my getting a new one (as do a lot of folks).

Do I sound whiny or have I just been on the pity pot too long this week? I'm just tired of waiting. I've tried being patient, but now the little stuff is starting to aggravate me. I have succeeded in not sweating the little stuff. Knowing it's ALL little stuff in the grand scheme of things. Except for this week. I see myself slipping back to my old ways of thinking (back when I was an alcoholic and junkie). It's a dangerous time for me and my sobriety I know this but have not been able to snap myself out of it. Maybe, this coupling with Valentine's day compounds my inability to cope. You see, thirty years ago my beloved asked me to share his life with with him on this day has something to do with it too. I'm just in a fragile state right now.

So pray for me for the next couple weeks if you can. I've never asked this of anyone before even though I know they do. And, thank you in advance.

Nothing is impossible.

I Got My Newest AFO!

I picked up my new AFO this week. I wish I could say it's a joy to walk with, but I can't. I'm currently nursing THREE pressure sores on my right foot.

One is is in the usual spot on the outside edge of my foot. For the second time now, my podiatrist had to evacuate dried blood from the sealed wound. Think of cutting away a newly reformed callus with a scalpel, and then scraping away at a half dollar sized, 1/2" thick mass of congealed and hardened blood. That's what eight years of pressure sores (10th time) in the same spot will get you.  This is from my old articulating AFO.

The second one is from is at the large ball joint of my big toe. This is from the replacement for the above AFO as it tries to keep my foot from inverting while spastic. It's just a standard fluid filled blister, but it's at a stage 3 and quite painful.

The newest spot (only erupted twice) is just below my ankle bone. This is cause by my new-new AFO as it loses the battle against my spastic foot. It would be at my ankle bone if the foot wasn't inverted almost 45 degrees in the AFO. It is also a stage 3. This one is excruciatingly painful as you can imagine.

All have ruptured and are in various stages of healing with the four times a day applications of gels and wet and dry dressings. Am I going to the wound care branch of the hospital for treatments, nope. They can't do anything that I can't do myself. Nurse heal thyself. I've just had so many pressure sores over the past eight years on my foot, I'd live there. LOL I'm only laughing to stop from crying. Why can't I be normal when it comes to AFOs?! It's the down side of being the Queen of Abby Normal I guess. All I want is to be able to walk without pain. I don't think that's too much to ask. Don't  even mention the "W" word to me (wheelchair). I'll slap you silly.

Maybe the combination of Botox and this new AFO will stop the pressure sores. I'm hoping. The next month will tell the tale.

Nothing is impossible.

Sunday Stroke Survival: Help to Keep Walking on MY Feet

As y'all know I'm waiting on yet another approval for a new AFO. These braces are just too expensive ($1500) to pay out of pocket for one.  Don't we all have a bag of money just lying around collecting dust. I don't know anyone on Social Security Disability that could afford it. So I call, and sit and wait.

Actually, I don't just sit around. I'm "working and walking" here. I've got critters and a garden to tend, and a harvest to process so we can eat. It just makes economic sense and cents. A $3.00 packet of seeds produces enough green beans to feed us for year. I don't know how groceries prices are in your neck of the woods, but you just can't buy that many pounds of fresh, cans or bags of frozen green beans for $3.00 these days even on sales. I'm talking about 208 servings worth of this one vegetable for us two widow folk on this homestead for a year's worth. That's not counting the beans that go into soups, stews, etc. Alright, I spent $9 on three packets of seeds, but even at that, you'd be hard pressed to do it.

The chickens provided us compost to feed the plants and their egg shells provided the calcium so the tomatoes and squashes do not get bottom rot on them. Heck, the chickens even scratched it all into the soil two inches deep for me. They more than pay for their keep. They feed us with eggs and meat. There's even enough eggs to sell to get some pennies in our pockets. Plus, they offers us their daily chicken "tv" show from dawn to dusk for our entertainment. We love to watch the Silkie, the smallest hen and is the lowest in the hen's pecking order, bosses the rooster around the yard. Now that the rooster has all the girls (16 hens) to look after, he doesn't have the time to attack me. Meanwhile, he's loving all the attention. They're like all those girls fawning and fainting over Elvis Presley... in my day. "Elvis, oh, Elvis!" Yes, I was one of those girls too.

Mel swears that all the dinosaur sounds for the  Jurassic Park movie was made by chickens. After ten years of raising chickens, I can believe that. But they are one of the critters I care for, feed, water and gather their eggs each day. So I'm up and doing. The quail aren't as entertaining.

While waiting on Medicare to making a decision, I'm changing my AFO between AFO #1, #2, and #3 about every three hours just so I can keep walking and doing. Before the sun comes up, I'm making bread and breakfast. Sun up, I'm in the garden weeding, watering, tending, and harvesting the crops trying to beat the heat of the day. I'm tending to the cats, dogs, and chickens. Lastly, I'm preserving the harvest for the rest of the day. There's harvest that goes into the dehydrators, processed for canning and freezing, and making our main meal of the day.

While processing the vegetables, I've got my AFO off while I'm seated on a stool. I've got my affected leg and foot propped up n the counter. Not very lady-like or sanitary, but it works. It's not higher than my heart, but it's the best I can do for an hour or two. The brace gets (now I'm starting over with AFO#1 again. The main difficulty is that my foot starts hurting after 30 minutes, and I have to stop and change braces. By the time dinner is fixed, all my braces hurt my foot. I'll plop myself into a chair uttering a small, "ouch" with every step along the way. Changing braces only gets me five minutes of wear now. I make it up the two steps from the back porch into the house after our television time (2 1/2 hours) Currently, we are watching "Arrow" and the new season of "The Protector" having finally watched the last "Supernatural." I pull my shoe off and loosen my AFO as I sit in front of my computer to blog, watch YouTube, and answer emails. At this point I'm willing my foot not to hurt until I take my bedtime medication...not that it relieves the pain, but I can finally take the brace off and go to bed. It's the only way my foot stops hurting.

But it's not off to a peaceful slumber yet, I pry the AFO off my foot. My foot is now red and swollen. I pull off my sock and survey the damage the day has wrought on my foot, ankle, and calf. I grab my lotion and massage all the really red pressure points of all the AFOs. I'll continue this until the circulation is restored and the redness dims to a rosy pink. I'll give the unaffected leg a cursory rubdown because the diabetic neuropathy is raging with redness and the customary pins and needles. I know if I don't do this, I'll be rudely awakened with leg cramps within a few hours. My foot needs at least four hours of no pressure to stop hurting. How do I know this? It was trials and errors at various time lengths between bathroom trips. Six to eight hours of heart lower than my foot and no AFO is the rare occurrence but it's the best with my schedule and bladder.

It's been a month already. I've been calling Hanger every two days to check on progress of which there is none. Can I do less while waiting? Yes, but I'd be thoroughly bored and stir crazy like last year. I also can't afford to slow down and eat this winter neither. HELP! What else can I do? I can't ask Mel to take over my job too. Her to-do list is as long as mine.

Nothing is impossible.

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.

New AFO Woes

Whenever, when living post stroke, you get a new pair of shoes or AFO (ankle foot orthotic) there's an adjustment period. During this period, there's the breaking in of the new stuff. Whether it's learning how to walk again because your leg has to adjust to the position it's now in, or a different balance point, or you have to wear the brace so many hours off and on during this time.

For me, it's been constant adjustments over the past six years. Whether it's been a new shoes , or AFO every year or every couple of years respectively. I've had a new AFO three times and numerous adjustments because I'm living my life post stroke. Nothing every stops me. It might delay me or slow me down, but never stops me from what I want/need to do.

Sounds like a big hassle, doesn't it? Yes, it is and no, it isn't. Anything is better than not being able to walk. So the hassles are worth it to me. Take my broken foot for instance. I'd just bought two new pairs of shoes back in November.

All the adjustment period to the new shoes was done. I was walking okay, sort of, when I ended up with three fractures in my AFO clad foot. So yet another adjustment period was needed because the AFO or the position the AFO had my foot was in caused the fractures. So something needed to be done to correct the problem. First, a mid sole rocker was placed on my right shoe of my affected foot. So I was learning to walk on my heel with this adjustment. Then, the orthotic practitioner cut the heel bump up for my contracted Achilles tendon down by half. This was a major adjustment to contend with. My Achilles tendon was now pulling and trying to stretch with the new adjustment. It sort of felt like I was walking on a sprained ankle at the end of the day. As a last resort, a new AFO was ordered and fitted.

I began a new breaking in period for the AFO. Wearing it for a few hours each day and swapping it out for the old one in between times. I mentioned the fact that it seemed high in the back and it could possibly cause some problems rising with knee movement to my practitioner when I first tried it on. She said she didn't want to cut down the back because the length was more stable. Well, my mistake, I bowed to her judgement. It was only a matter of days, rising up off the sofa, or any chair that was standard height for a nasty cut to form behind my kneecap. I slapped some antibiotic ointment on it and kept an extra large Band-Aid on it to prevent it happening again. I would address the issue with her in a month at my followup appointment.

As time went on, I worked my way up to four hours in the off and on cycle. I noticed redness on my foot and ankle. But the redness went away during the off time of the new AFO. Redness is a stage 1 pressure sore if it doesn't resolve. Yes, my foot was straight. I could walk better. I even lost the tilt my old AFO caused in my balance. I could walk upright with very little of a hobble while wearing the new AFO. I loved it! My balance and gait were almost normal.

My therapist was concerned with the redness and played the twenty questions game with me. This session she was working on my foot and Achilles tendon stretches. She massaged the area of redness trying to reduce the swelling and redness as she stretched.  After an hour of this she talked to me very candidly. I shouldn't wear the new AFO until it was fixed. In one spot of three, she gauged the pressure sore below my ankle at a stage three although it had not broken the outer skin. The blister went deep and it was only matter of a short time that it would break the outer skin if not hours. I'm no stranger with pressure sores. The fact that I now have three spots where I previously had none was concerning.

As a previously insulin dependent diabetic, I still pay special attention to my feet. Because of the aneurysms in both femoral arteries, I pay extra special care of my feet because of poor circulation. Although I talked about amputating my affected leg below the knee, I really don't want to do it this way. I also don't want to go through numerous pressure sores either until a thick callus can form like it has on the side and sole of my affected foot.

So yet another trip to the orthotic place is in order. I want this fixed before I develop worse pressure sores, obviously. Also I paid out of pocket for my shoes adjustments, and a couple hundred dollars (the balance of my deductible) for the AFO. It is laying on the foot of my bed while I'm making do with my old one. The good news is that the pressure sores have healed now. I still get that sprained ankle feel at the end of the day. I also have the foot pain like a knife periodically because I'm wearing the old brace. So 7AM Thursday, I'm making the thirty minute drive via interstate bypass and city driving at rush hour to Hanger...more like 45 minutes. I hope they can fix it.

Nothing is impossible.

Sunday Stroke Survival~ Odds,Ends, and Thanks!

Thank you for all the good wishes and concern about my hand and my fall. Y'all make it the best of a bad situation. I do appreciate you. My left hand is better. See all you naysayers out there it wasn't broken. You know who you are.

I call this blog the Murphey Saga because nobody would believe what life throws at us on a daily basis unless I write about it. My tagline remains the same although I'm not writing (book or article wise) right now. Because my stroke and my life IS getting in the way of my love of writing and storytelling.

I thought I would explain this to the fifty odd new followers and readers (maybe more) of this blog that didn't know. The title came about in the Compuserve Writers Forum too many years ago. It was in answer to a response I got to a post. I don't remember what it was about now.

I answered, "The Murphey Sa-a-aga-a. The ongoing story of a family in a small town in Georgia. Where the Luck of the Irish and Murphy's Law collide in writing. A soap opera so unbelievable that if it was truly on-air you would not watch it because it had to be fake."

There you have it. That's the reason behind my title of this blog. Any questions?

Notables-

• I reached 100,000 hits on my blog this week. That figure boggles my mind. Maybe if I had written 1,000 blogs it would be feasible, but 100,000!
• The second thing is I've written just over 500 blog posts. That has to be a record of some kind for me. I didn't think I had that much in general to write about my life. But there is so much going on, I can't help myself.

Thanks to the Stroke Tribe.( Amy, Dean, Barb, Rebecca, John to name a few) No matter what. They've got my back. Through them I gain

valuable information so I at least sound more creditable. When I talk to professionals about what works and what doesn't, new innovated techniques, and their support has been invaluable during this recovery period since my strokes.

My cheerleaders along this journey from the Compuserve Books and Authors Forum (Zan Marie, Sara, Lara to name a few). We tag-a-long after each other like long time pals though we have never met in person. Thanks! You brighten my days.

Without all of you I couldn't have reached these numbers. Aw shucks! Y'all have got me bawling now just thinking of y'all. OR, maybe it's just my PBA kicking in again. Got ya!

Well, rehab has stopped for the time being while I wait for my next series of Botox injections. Spasticity has raised its ugly, fat head once again.

But something is different this time around. The spasticity doesn't seem as bad. Yes, I'm hampered from moving as much as I did when the Botox first started working. But I am still able to move instead of being drawn up. I'm happy to say the Botox has worn off totally in my leg. The ankle was so unsteady that walking was down right a dicey proposition at times. And no, it didn't stop another pressure sore from coming up.

Speaking of pressure sores, I'm not so sure that's what I have going on with my foot. A large blister will form under the callus on my foot where the AFO rubs. Sort of like you get when you wear tight shoes. When the blister pops it takes the callus with it leaving an open wound. This wound gets bigger and deeper with each occurrence. In that way it's like a pressure sore. It is also from pressure of walking while wearing my AFO. Still fighting the insurance company for a new one.

Yes it takes ointments and wet/dry dressings to heal like a pressure sore. It takes a doctor or me to cut away the dead tissue with a scalpel at the edges to heal.  But is it really a pressure sore...I dunno. I take the same attitude with it as dealing with Southeastern Legless Lizards...

1. If it looks like a snake
2. If it moves like a snake
3. If it has a forked tongue like a snake
4. Has dead, glassy eyes like a snake...

It is a snake! Quick kill it!
Therefore until I'm actually told otherwise...these are reoccurring pressure sores. I don't feel like taking the same advice about this lizard though. As long as it stays away from me...it can live.

Probably sometime next week I'll tell you how the week went. Once again, it's the continuing s-a-ag-a of the Murphey household.

Nothing is impossible with determination.

Friday the 13th wasn't so bad after all...

I figured this morning I'd be in big trouble with my foot doctor for my renewed AFO rupture of my pressure sore. We had worked a month to get the new skin growth and get the wound to close- 3 debridments, wet/dry dressings, antibiotic in pills and creams to head off any infections, and 8 visits to his office.

Today was supposed to be just a 30-minute follow up that turned into a 2-hour appointment...not waiting but in actual time spent with doctors!

With facing a triple athrodesis surgery looming over my head, it hasn't been a very good week. Heck, I'm still sore from yesterday's Botox injections with 6" needles. I asked him almost pleading with him if he did this kind of surgery. He doesn't or at least hasn't done one in the last ten years. I really hate breaking in new doctors or refill in old doctors I hadn't seen in a while. Just too much stuff has gone downhill in my life in just 6 years medically. In my ortho's case, it's been that long.

I told my foot doctor about the various appointments I'd had between neurologist, brace maker, and orthopedist. He shook his head and asked, "Do you really want to go through all that?"
You can guess my response to him. As a preacher I know you shouldn't cuss, but I did.
He then told me as he saw it and broke it down for me...

• The AFO is causing the pressure sore. That will continue to be a problem.
• The AFO cannot have any further alteration.
• My insurance would not pay for a new AFO but would pay for this surgery.

When I nodded my head, he responded with another cuss word that starts with bull----! He called in the three other doctors in the practice for a consult and second opinions too. They basically said the same thing after examining my foot and ankle. I was half scared and the other half almost sick with concern about what would happen next.

His solution...

•  Call the brace maker and find out what ICD (diagnosis) codes were used for the original brace. He did right there and then.
• He rattled off some additional diagnosis codes that might work. None of them had to do with my stroke.
• He'll call me Monday whether the new codes circumvent the 5-year rule.
• If I do need surgery he would recommend an Achilles tendon release. He would do it like he did my Achilles rupture on the other foot. I would be nonweight bearing for four weeks instead of two months and I would go into a less confining AFO after surgery. Total heal time is ten weeks instead of six months. When I mentioned that I couldn't use crutches this time, his response was a knee wheelie thingy or wheelchair.
• He has an agreement with the company for a 30- day trial period. If the one he orders doesn't work he can order another one or build one himself. Yes, he's a certified brace maker as well.

When I explained to him that I just bought a $225 pair of diabetic shoes and had them altered with lifts and insoles. With the new AFO none of that would be necessary. He just patted me on the shoulder and said, "If this new AFO works like it's supposed to I'll replace your shoes free of charge. The main thing is to get you better."

When I asked him the cost if the insurance didn't pay. He said not to worry about it. He'd sell it to me at his price about $300 cheaper and take payments.

I could have cried. And people don't understand with all that is going on in this Murphey Saga why I feel blessed. Now is there any doubt?

Thursday turmoil ~ Surgery as the Best Option?

So this week has seen a slew of doctor and brace maker visits with more today and tomorrow. Some have been for my DH (darling hubby) but most have been for me.

Physical therapy has stopped once again due to my spasticity. Considering my insurance allows for 75 visits a year, I've still got more appointments left for this year and it's September!

 Monday kicked off with my hubby's pain management appointment. No biggie that's a normal monthly thing. I was discharged from PT at my request the spasticity is back with a vengeance. Again no biggie have done this a couple of times this year already. The pinched nerve is handled by the home traction unit. The pain is only once a day so long as I don't over do it.

The leg that's another can of worms. I was making good progress on healing my pressure sore until Tuesday. All Hades broke loose literally. I had an appointment with my brace maker for more adjustments on my AFO (ankle, foot orthodic) that enables me to walk. I started having renewed pain and swelling in spite of the last adjustment and $225 shoe that they said would correct the problem.

You know me, Ms. Abby Normal. The spasticity is undoing all the good the orthodic is supposed to fix. When I took off my brace there was a blood stain on it. When I looked at my sock it was crusted with blood. In fact the sock was glued to my foot by it. The pressure sore which had been healing well ruptured again. A month's worth of debridements, wet/dry dressings, medicines etc down the drain. There is also no more adjustments that can be made to my AFO without damaging its structural support. A new one can't be molded for another 3 1/2 years unless I want to pay out of pocket for it.

Long story short, surgery is highly recommended to correct the inversion and alleviate the pressure. Which meant an added visit to my orthopedist for a consult for a triple arthodesis procedure. The procedure will permanently fix my ankle in a 90 degree angle with pins and screws. Seems kind of drastic doesn't it?

Lengthening the tendons nonsurgically isn't working. During high spasticity, there's nothing to be done. Today I'm having another round of Botox, but it will be a week before it takes effect.

While my house is newly renovated for wheelchair access, it's not a choice I'd like to make because of pressure sores. The down side is I could lose my foot. But neither my husband or myself could lift a wheelchair in and out of the car. I have to be mobile. It's better than a mile to the nearest grocery store or pharmacy. Customizing my van for roll in access is impossible. I'd have to buy a new one because of the weight distribution. I cannot afford one.

The surgery itself carries risks, but for me the risks triple. I'm facing the possibility of another stroke or death. The last time I under went general anesthesia surgery my heart stopped twice so a forty-five minute procedue lasted two and a half hours. The idea of another stroke just scares the heck out of me. Six weeks of nonweight bearing on the leg is a challenge but doable. Four months in a cast is also doable.

But if successful...no more pressure sores. No more AFO and I can kiss my cane goodbye. I could actually wear normal shoes again. No danger of falls, no balance issues causes by the built up shoes. I wouldn't face being wheelchair bound and its expense. Just imagine the savings.

I'll have to get permission from both my cardiologist and neurologist. Both have continually said no to any procedure including dental work for almost 18 months. I see the neurologist today. Wish me luck.

I hope y'all are having a better week.