Sunday, October 13, 2019

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, October 6, 2019

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.

Sunday, September 29, 2019

Sunday Stroke Survival: Incontinence Revisited

Since my first Baclofen pump surgery in April, the marginal bladder control I had, since my first stroke, is gone. I used to feel the urge to go and make to the bathroom in time except for a little dribble. To handle this, I wore a pad. It worked well for almost 6 years.

To be honest, I had stress incontinence long before my stroke, but this was corrected by a sling  placement during the surgery to remove five tumors from my abdomen in 2006. The sling ruptured in 2013. My signal time to go and leakage dropped to 1 minute...about the time I could make it to the bathroom and not have an accident. The signal cue was delayed by my loosing sensory feeling in my peritoneal area with my first stroke. I now take my cues from my belly button. At the time, I was on Lasix also which only compounded the problem.

Since the trauma to the nerves in my lower spine during the baclofen pump placement, that cue of have to go to bathroom dropped to 3 seconds. I could barely stand up and get my legs straight when the flood started. It was no longer a trickle, but bladder emptying gushes of urine with every step with very little control. I made the decision to go back into diapers, or pull ups. Immediately I noticed a huge difference in price for a month's worth. The pull ups were cheaper than the Always pads I was buying. I was honestly surprised by this. The gushes being handled had the benefit of no more clothing changes, 3 or 4 showers daily, embarrassing accidents, and mental stress relief.

Now I know all about kegel exercises, timed bladder emptying, etc. I've worked on it all since April trying to get control of my bladder to no avail. With the pump removal, the trauma to those sensory nerves has doubled. I no longer have that cue at my belly button. Even with timed bladder emptying and fluid restriction, a gush can happen within 30 minutes after fully and conscientiously emptying my bladder. There is no controlling it or reteaching my bladder right now. So adult diapers are a necessity. I can accept that. Have I a choice, no. At least I've got my bowel control back after a month long battle with diarrhea (caused by a low fiber diet and meds they had me on) after my hospital stay.

So I've currently given up on my bladder control issues for the time being. I've got bigger irons in the fire that demand my immediate attention. Knowing from previous spinal traumas, it will take four to six months for the trauma to heal. By then, God willing, I'll have a new pump implanted setting the clock back again. I'm in no hurry. You can't fight your body's healing time. Every body heals differently and I know mine. I'm the Queen of Abby Normal, I take the maximum time to heal, and then some. I look at the time to heal as guidelines. Some heal faster and some heal slower, I'm a snail. I always have been since I hit forty and became an insulin dependent diabetic. Now that the diabetes is no more, I'm still a slow healer. Go figure.


I know I've said spinal trauma several times in this post. To me, due to my training, trauma is damage or shock to my spine. An intrusion or insult of a foreign substance, that causes pain and swelling displacing a normal condition. A catheter was fed from my lower spine to my cervical spine. For my height, that's almost a foot and a half.  The incision point, the insertion of the catheter, in the implantation they had oi chip a piece of my spine to anchor the leads, and stitches to hold everything in place. Plus, the catheter puts pressure along the spinal cord. All of that was traumatizing my spine and spinal cord.

Now with the pull ups, I can get up, and do within reason without having urine running down my legs by the time I get to the bathroom. I'm still in the recovering my stamina from my July stint in the hospital. I'm still not recovered it all yet. I may never will, but that remains to be seen. Such is life in an older body. Everyday, I push my boundaries. Some days I bounce back, and others I need a couple of days to bounce back. I've got until spring planting season to get it back. So I'll keep working at it.

Nothing is impossible.

Sunday, September 22, 2019

Sunday Stroke Survival: Phone Scams/Emails SPAM Rant

Just because I'm older doesn't mean I'm stupid! This has nothing to do with living post stroke only real life.

Since the loss of my phone and my inability to get another working phone, I've been using Mel's phone. I've been answering a lot of "unknown caller" calls. They are usually one of my doctors or family and friends with the usual robot call.

One particular phone call had me rattled this week. They knew my name, address, and was calling for me on Mel's phone. They were calling to inquire about a missing $1,000 check. As it so happens, I was actually involved in a check dispute at the time for that exact amount. But, when they starting asking questions like SS# and date of my birth, the alarm bells went off in my head. They only referred to the other party as "client" I knew something was fishy. She said in an Indian accented English, there was a form I needed to sign, and did I have a fax # to send it to. I answered no, but they had my mailing address. Just mail it to me. It's been two weeks and no form. And now a month later, still no form in my mail box.

To top it off, I called the other party and several others. My roommate even got the call using her name. They also have received phone calls. The paranoid gene kicked off in my brain (it could have been the coming off my anti-psychotic med too). Is someone watching me for some unknown reason? Am I being targeted? Or has someone found my old phone and using that information? Was I really going nuts, or reverting to my past experience as a law enforcement officer? I loved my stint in Bunco and I was good at it. I checked with my friends and one of them called the number left on his voice mail and called them back. The recording said they had regular business hours and to leave a message. In contacting Verizon, I found the phone had not been powered up/charged and turned on, or wasn't pinging the location. That said "Scam Alert"  to me. If I had not been for coincidental factors I would have known it was a scam sooner.

But, have you noticed the recent influx of email scams/spams? With titles like "collaboration blog" or just requests to write a blog touting their product? I've worked long and hard on this Blogspot website and been posting since 1999 and this particular site since 2011. I've got the following, the hits (over half a million), and the comments. I know Blogspot sells this info. They have to make money somehow and it costs big money to do this for free.

I treat every email as a link to a virus, worm, hack, or other such nonsense. I rarely click on links unless they come from really trusted friends who think the same way I do and recognize the site I'm going to, like YouTube. My computer and other I send messages to are too important to me. It's a shame that hackers make such nasty things to ruin such a big part of our lives. But those are the times we live in.

I usually just read and delete them. But, this email arrived the day after the phone scam thing, and I had a short-lived hope...

Hi Dear,
It is so nice to have this chance to enjoy reading your blog.
Here is our website: https://www.custom-necklace .com/

We sincerely invite you to cooperate with us for a post:
*You write an 300-500 words article with links about our products and post it on your blog or social website for permanent.

Waiting for your positive reply.
Best Regards

I went and looked because I was thinking it may have some handicap closures, etc. Don't bother. They don't. Disappointed, I fired back this...

Ellen,

I stopped by your website. Beautiful jewelry.

You obviously have not read my blog. My blog contains articles that pertain to stroke and brain injury survivors for the last seven years. AND, before that it was my author's site.

Unless you have items that can be fastened with one functioning hand your bracelets and necklaces don't appear to function that way. Try it yourself, and then you'll see the some challenges we face daily.

Impressed by my stats, which is where I suspect you got my email from, don't be. I'd switch bodies with you anytime. I lost two careers that I loved with my strokes. My publishing and as an ordained minister.

I know you are just doing your job.
Usually, I'd not bother. Ellen caught me at a weak moment. I haven't heard back from Ellen. If you knew me, I'm clearly visible in my posts, nobody calls me "Dear" unless you're over 90 years old and then, you call everyone you don't know dear. Even then you are stretching it. But I'll comply, sort of with this and it's not going to be pretty. My horns are showing...

All necklaces have lobster clasp or "C" clasps on all necklaces
Not user friendly for a one handed person
 
I DO NOT RECOMMEND THIS SITE TO ANY OF MY READERS!!!
 
I sent this to Ellen after this post appeared.
Ellen,
You wanted 300-500 words. You got only new 222 words. Actually, with the publication of our email conversations it hits the mark, two pieces of jewelry shown and a visit to your website, shows your website addy, it's permanent, and published on my blog. Are you happy now? Have a blessed day.
 
I warned you my horns were showing. So scammers, hackers, and cold calling marketers beware. I got your number.  
 
Nothing is impossible.

Sunday, September 15, 2019

Sunday Stroke Survival: Aging

1971 Shasta camper
Getting off the subject of my ill health woes. I was watching a YouTube video of revamping a vintage camper into a tiny house. Yes, I'm still crazy about tiny houses. The camper in question was a 1971 pull behind "RV." It struck my funny bone. Vintage?! I was getting ready to graduate high school when this camper was built.

It got me thinking about aging. If the 1970s was vintage, what would I be called at my age? I'm certainly not antique because I'd have to be over 100 years old. I'm old, but not that old although I do feel like I'm close to it right now. Ancient would be over 1,000 years old. I definitely don't fit in this category. What's in between vintage and antique?

That set me searching. There isn't one. If you know of one, please let me know. I love the word SEXagenarian. It covers the ages between the 60s and 70s. So I can use it for a few more years. So I guess I'm mid-line vintage. That's not too bad, I guess.😕

When I think vintage, I think sock hops, drive-in diners, and saddle shoes. Today, it's Afros out to there, bell bottom jeans, and heavy eye makeup of my high school years. My younger sisters even had old train cases full of make up. Me not so much. Even back then, I wasn't a fru-fru girl. A little bit of blusher, mascara and maybe a pencil eyeliner. 
In case you didn't know, a train case was a small suitcase carry on that your parents or grandparents used to carry essentials in when traveling. Smaller than a carry-on. My sisters had it full of different colored mascaras, eyeliners, lipsticks, eye shadows, etc. to achieve just the right look. It took them hours, reapplying during the day, to put it all on, keep it on, and take it off. The most make up I ever wore was my wedding day (the first one). My sisters made us appointments at Merle Norman's. They offered free make up jobs in the hopes that you'd buy all their products. I have to admit I looked darn good in the photographs, but I couldn't wait until I could wash it all off.

I guess that's why, until my strokes seven years ago, most people pegged my age at least ten years younger. Besides being Asian, I let my skin breathe for most of my life. Your skin is the largest organ. You need to protect it. I've never even been tempted to go to a tanning place, but wore sunscreen, and tanned naturally through outside activities. By the end of summer, I was a golden brown and usually still am. Not this year though, I've been inside too much. sigh! A tiny medical reference.

I'm vintage and loving it! I'm thinking of finely, aged wines and cars. Classical and not as crude as I once was. Not a beauty queen, but the girl next door pretty. Well, maybe if I take the time to brush my hair and apply some make up. I prefer infamous to fame. I'm the type of of person who gets behind you and pushes you to be the best you can be, and applaud you the loudest when you get there. I'm just Jo. I'm aging not so gracefully, but what you see is what you get. Now, I'm too vintage to care what you think. But then again, I've always felt that way even in high school.

I still believe "Nothing is impossible." Ir keeps me going and striving to be whatever I want to be. No matter how old I am or what it's called.


Sunday, September 8, 2019

Sunday Stroke Survival: Ugh! My Doctor Rounds

I've spent the last several weeks doing my regular doctor rounds. As I've said previously here, it's important to have all your doctors (your heealth care team) on the same page.

What happened at Emory a month ago caused a major hiccup in my health care plan and numerous missed appointments. They had to be updated. I've had medicine adjusted, discontinued and added. Who wants drug interactions thrown into the mix? A seizure and an undignosed head injury were just the tip of the iceberg in the realm of neurosurgery and neurology that they needed to know. But it effects all my other doctors too. My heart stopping was in the realm of my cardiologist, but my PCP needed to know this too. In fact, my PCP needed to know ALL of it because he's my ring leader and clearing house for everything medical. Even my podiatrist got updated because now with the low heart rates and blood pressure, I have poor circulation to my feet on top of my neuropathy in my feet. A double whammy for possible complication to pressure sores caused by my AFO.

They are my team and I'm at the center for the best possible outcome for me. This is not only deals with the doctors but their nurses as well. By everyone being on the same page, they can make informed decisions. For example, I really need to have my cancerous tumor in my thyroid area removed. But I have to heal up from my baclofen pump removal and the infection that started it all. This means contact with my neurosurgeon through my PCP or directly. My neurologist comes into play at this point because he's not only juggling my post strokes care, the fact I no longer have a baclofen pump, and the spasticity has returned with a vengeance, but also my seizure.  I have them under control and stable before I can even think about having surgery. Then, the cardiologist into play because my heart stopped. I've also got  three out of four leaky valves in my heart, unstable angina, been in heart failure, paradoxical blood pressures inside my heart vs my whole body, and worsen plaque in my carotids. It takes the whole team weighing in on a surgery and follow up treatments for my cancer.

While I agree with this team approach, I just want the cancer removed and go on with my life. I feel like Damocles' sword is hanging over my head. Can you blame me?

So the timeline looks like this. End of May they found the tumor.The beginning of July, I was preparing for this cancer surgery. It's September now. Neurology- I have to be clear and stabilized on seizure meds (at least a month).  Plus be off my blood thinners for at least 7 days which increases my likilihood of having yet another stroke by 75%.
Neurosurgeon- At least 8 weeks after pump removal. I'm now on week 7. Another week to go.
Cardiology- Have to be off blood thinners for 7 days and determine how to keep my heart beating during surgery since I can't take my atenenol nor my omega3 which reduces my cholesterol (at least two weeks). Will being off my blood thinner and omega 3 increase the likelihood of the plaque breaking loose thereby having another stroke or my lungs causing further complications.

It's complicated. So maybe by the beginning of October, I can be cleared for the cancer removal. I'm still hoping it hasn't spread by then. It's the luck of the Irish dampened by Murphy's Law.

Nothing is impossible.


Sunday, September 1, 2019

Sunday Stroke Survival: If Not Me

So many people have offered me condolences for what I've been going through...the death of my beloved, my heart issue, living post strokes, and now dealing with cancer again. I understand. They can't think of anything else to say with any sincerity. They really do care.

Part of what the Murphey Saga is all about is telling it like it is. In reading my posts, a small part of them says, "Whew! I'm glad it isn't me!" or as bad as it gets, "Wow! Look at her go. What an affirmation and inspiration!" But in reality, that's why I keep writing. I'll respond with it's "Murphy's Law and I'm Murphey," or Neitzsche 's "that which doesn't kill us...",or "Trouble with Tribbles," or even "If not me, then someone else."

In fact, it's the last one, "If not me, then someone else" that spurs me on. I can't imagine all of this happening to someone else. So I'd rather it be me. I know where my strength lies and comes from. Even though it might devastate someone else, I have the ability, through God's Grace, the weather this storm. No matter what comes. I have faith that one way or another, it will be alright. God will always be praised. Through Him, my strength is magnified. If you don't believe in a higher power, then I feel sorry for you. Someone else may not have the inner strength, fortitude, or faith to carry them through as I do.

In the grand scheme of life, this is a bump in the road. Every mishap in life is but a moment. My husband living ten years after the doctors all said any time now he's going to die. Even ten years out of the 66 years of his life was a drop in the bucket of his life. Every "bad" thing that's happened in my life are just drops. The abundant joy I've lived is appreciated more than all those bumps or detours in the road or drops in my bucket in my life. Not everyone feels this way or even knows about this.

For as bad as it can get for me, it is worse for others out there. Remember, it can always be worse. Remember I once compared myself, after my stroke, to my friend who was left with no arms after a car accident with three small kids? The same thing applies with me facing cancer again. I'm friends with an elderly couple in their 80s. He was diagnosed with cancer. It hit his lymph nodes and spread like wild fire. He beat a different cancer just a year ago. Now he's going through heavy duty chemo to beat his cancer back a few months. Not curing it mind you just to survive a few months more with his wife. He just celebrated his 83rd birthday. No hope of surgery or cure because its spread throughout his body. The happy times are remembered and carry the rest of us through.

Not that my cancer hasn't spread but I don't know that yet. Mine may have. It's a tragedy of errors that has plagued my life so far. But still, I'm counseling to this couple to enjoy every moment that they have. It's similar to the way I talk to couples who aren't undergoing calamities in their life. Even though my beloved and I had twenty-eight years together, 25 years married, we never forgot how time in this life is short. Twenty-eight years was a drop in the bucket of my life and his. So being in my 7th year of recovering post stroke is nothing but a bump in the road as is facing cancer again. It's a factor in my life for now. For all the "bad, scary, and upheavals" in my life, there are hundreds, if not thousands, of blessings and thankful happy moments to offset them. It tips my scales towards the positive.

Nothing is impossible.

Sunday, August 25, 2019

Sunday Stroke Survival: The Energizer Bunny

At times, I feel like the Energizer Bunny. But the battery is running low so instead of  him beating his drum in a rapid cadence, it's more like skipping every other beat. Kind of like my heart is doing right now. No, that's not good news either.

But I'm stronger than last week. I managed to go with Mel to the dump. More for moral support than actually helping because I'm still under a 10 lb weight lifting restraint. I actually managed to feed the rabbits and chickens three times this week. I leave the watering to Mel, it's too much repetitive bending for me to do comfortably yet, but I'm doing more while am healing up. I've even managed cooking our main meal (3 PM- 5PM) five times this week. So that's an improvement, but it's not happening fast enough.

While I know I'll get there in time, I have this ticking time bomb booming in my head with every passing day while I recover and get semi normal again. The time bomb is the cancer in my thyroid area. Everyday that passes is another day that it might spread to my lungs, brain, or lymphatic system. I'm already living post six strokes, a failed baclofen pump placement and removal, and a failing heart. Did I really need cancer too? Talk about a quadruple whammy!

I-131
So as you can tell, my patience is running a bit thin right now with it taking so long to recover enough for this next surgery. The radiation therapy has a basically, for this type of cancer, carries with it a 28-day half life of isolation protocol. I have to spend the first two weeks in a lead lined room in the hospital. After that I'm discharged home, I have to maintain a 3-foot distance from every living thing (plant and animal). My bedding and clothing need to be washed twice, any eating and cooking stuff will be contaminated and must be washed in the dishwasher or use disposables. Meals will have to be cooked by Mel. Been here, done that, and didn't want to do it again.

That brings up another point. Disposables must be bagged separately in bio-hazard bags and held for 90 days before it's safe enough to be disposed of. Even though the hospitals can dispose these, it can only happen after the 45-day mark. Imagine how many diapers, and paper goods will be generated in that time frame.

Now if the cancer has spread, that a whole 'nother can of worms. More radiation (not the isolation type) and chemo to look forward to. Sure I can afford at least a 50-lb weight drop, but I can think of a dozen less drastic ways to do  this. Losing my hair is the least of my worries. I'll be fighting for my life. When I've gone through this before I wore peasant skirts and blouses, big earrings, and silk scarves. These were my gypsy months. But as a sexagenarian, I don't think I'll bother with that this time. Before, I stayed in the work force and was in the public eye more.

Around here, the rabbits, chickens, cats, dogs, and garden don't care what I look like so long as they are tended to. Well I take that back, Buddy Baby (rabbit) and Lil Bit (cat) do like to lick my eyelids and brows, and groom my hair as a signs of affection. But that's it. Mel will just have to get used to it. With the weather cooling down, I can always knit myself a couple of chemo caps while they pump that poison into my veins, right?

Did I mention my patience is wearing thin? My thoughts turn positively morbid when I get like this. Can't you tell? My positive, uplifting, and optimistic side  slides into oblivion the more my patience gets thinner. I can still pray so I'm not totally without hope. This is the most important thing to me. Now, God is giving me enough patience to get me through today and that's my blessing. He keeps reminding me that He is control no matter what happens. He's got my back, front, and both sides.

Nothing is impossible.

Sunday, August 18, 2019

Sunday Stroke Survival: Recovering in Slow Motion

Recovering from a seizure, near death, a massive infection, and a baclofen pump removal surgery is no picnic. It's recovery in slow motion. Add advancing age and living post stroke into the mix makes recovery even slower.

I am now  2 1/2 weeks out of the hospital. To date, I've cooked 2 meals with assistance, been out of the house once for a shopping trip (I didn't go in, just sat in the car), I've taken two full showers, and walk one row of the garden (26'). Mind you, not in the same day or even every other day. I haven't had the strength. Even climbing four stairs is exhausting. We've had a couple of chicks born to a broody hen that I haven't been out to see. After each event, I've had to take a nap and takes a day to recover from the activity!

I'm feeling every one of my years. I no longer need a helping hand to rise from a chair although it still takes a couple of attempts.My functioning side is weakened from so long in the hospital. I wasn't allowed to get up from the bed at all until I was discharged.

So what am I doing about it?
  • I've enlisted the help of my home health care PT services for strengthening. Not that I don't know the routine by now, but the refresher is good.
  • I make a point of rising from my desk every hour and walking the 40 steps to the bathroom. I usually don't make it so I've back tracked into pull up again. But, this is a strengthening exercise. I'll retrain my bladder later.
  • I make a point to do one little thing extra each day. It could be making myself breakfast, snacks, lunch, or dinner. Like tonight, I'm making Goulash from scratch and biscuits. That's something new so far. I may have to cook the ground beef and sit down, chop the onions with my slap chopper and sit down, drain the beef and add the onions, and sit down, and add the spices, tomatoes, macaroni and sit down while it cooks. Finally make my baking powder biscuits. I'll sit down again while they bake. I'll serve it up. Mel will carry it out to the back porch because I need my functioning hand to maneuver the steps. I'll be sweating and exhausted by then, like I've worked all day in the garden and tended the animals.
  • I'm still taking a daily two-hour naps to get through the day. Between the baclofen, dantrolene, and seizure meds I stay sleepy. I haven't dared to take my valium to ease the increasing pain from the spasticity.
  • I keep a 1lb hand and ankle weight on my functioning side by my computer and do 10 reps every two to three hours. While this succeeds in tiring me out further, it would be time spent watching a movie or show on Netflix anyhow.
Still I'm in slow motion. The stitches came out this week. They were starting to get itchy and getting caught in my abdominal binder. The incisions still catch me and let me know I can't move that way yet. So I know I'm healing. I've now finished all my antibiotics. If any germs lived through a month of four heavy duty antibiotics deserves to live. You'd think that I recover faster doing all of this, but I'm not. I'll keep at it. Maybe one day, I'll awaken full of energy and giddy up and go but I'm not holding my breath.

Nothing is impossible.

Sunday, August 11, 2019

Sunday Stroke Survival: Trouble with Tribbles Continued

Du,ring my down (nonwriting) time and before my unexpectedly long hospitalization, I had some life decisions to make. The accident shook me up and hurt me worse than I wrote about here. I had a concussion, an avulsed left eye, banged up both sides of my body, my implant slipped from its pocket, and was really doubting my ability to continue to live independently.

It was this last doubt that made me stop writing the posts. I needed to do some serious soul searching. I started doubting and second guessing every decision I'd made since my stroke in 2012 and the death of my husband in 2015. Yes, I was that badly shaken up. Who was I now? What was I honestly capable of now? How much of what I believed I could do was hype and how much was reality? I was reevaluating goals and trying to find some order that was realistic. This was a mighty tall order and I was taking an honest hard look at my life and the rest of my life. With all that's come down the pipe is it any wonder I wanted it to be 2012 again, but it never would be again?

I wasn't without options. I could give up this lifestyle choice and move into a senior's living place or assisted living place back home. I have so few possessions that it would be feasible. I'd even have to buy a few things like dinnerware, a dining table and a bed. My needs are really simple at this point. It would just mean moving back home near family, friends, and my church. But it would mean giving up some of my independence. I decided to stay put for the time being. The other options were still open.

After my ordeal, the simple acts of feeding myself, going to the bathroom, and getting dressed are about all I can manage these days. Once again, I'm considering my other options, but my stubbornness continues to make me stay put for as long as I can. Although distant, my stamina will increase again. Oh what a joy to get older. Everything takes longer. A long list of honey-dos awaits and growing while I do this. They'll get done eventually.

Nothing is impossible.

Sunday, August 4, 2019

Sunday Stroke Survival: Trouble with Tribbles

Original Star Trek series circa 1967
I got tired of using the Murphy's Law line. So instead, I chose the title of one of my favorite Star Trek episodes. The gist is the same. One little thing snowballs into some major things including death or at at least circumnavigating death once again for me.

Even the old Neitzche's line of that which doesn't kill us makes us stronger is old and trite to me after my past couple weeks. The fact is, I'm tired. Not that I have a death wish, but more exactly exhausted of living. I'll explain.

It all started innocently enough. I had an ultrasound of my "thyroid" scheduled for the week of  the 23rd. An incidental finding of the CT of my neck after my car accident at the end of May showed an enlarged thyroid gland. The only problem with this was my thyroid and parathyroid glands were removed in 1993 due to cancer. To say I was concerned by the new finding was disturbing was an understatement.  But yet, I had beaten this cancer before and knew I could again even though my mother hadn't. A plan was in place to ultrasound the area and consult a surgeon to remove the growth. My GP's feeling if it wasn't in there naturally, it should be removed with my history. I wholeheartedly agreed.

I had an appointment with my cardiologist because my unusual Electrocardiogram reading and changes in my EKG. It seems the I have low blood pressures throughout my body but have high blood pressure within my heart damaging my already damaged heart valves. My three of four valves are fast approaching replacement which I have refused and we were searching for additional options.

Both of these fall within living my life to the fullest without major interventions. So I faced them with no major upset and rolling with the punches. That's why this is my saga versus a blog. Stuff happens and keeps happening in my life that would overwhelm most people. I've learned over the decades to not sweat the small stuff and almost everything is small stuff. Living post stroke, living with a bad heart, or living with/post cancer is even small stuff in the whole picture of living. They are bumps or detours in the roadway of life. You get through them and go on living the best you can. That's all anybody can do, right?

So what tilted my apple cart? Yes, everyone has a limit, even me. I awoke on Friday the 20th and noticed my nightshirt was wet over my pump. I thought maybe my nightshirt had bunched up at my waist and sweat had accumulated there. I changed into t-shirt and shorts, and thought nothing more about it. I fed the dogs and me, and went about my normal daily activities. After about an hour, my affected arm brushed against my shirt. I noticed a 8" fluid stain on my t-shirt. Oh, great, I thought, I'm leaking baclofen from my pump. I could overdose if it were not correct. This made it an emergency situation. I put in a call to my baclofen doctor at Emory.

The rapid return call was not what I expected. There was no way I was leaking baclofen. There was a strong possibility I was leaking spinal fluid! This was an emergency. Arrangements were made for my direct admit to Emory. Even though I was on blood thinners, they'd have to go in and remove the catheter pulled from my spine immediately.

Upon my arrival, 2 1/2 hrs later with Atlanta traffic, I was whisked upstairs. Dr Au Yong was in surgery so in rushed two of his neurosurgeon residents. Upon excreting some of the liquid, taking swabs for the lab, I was put in a gown and put into bed. The good news was that it wasn't spinal fluid. It was pus from a massive infection. I had an abdomen full surrounding my pump. The emergency was only now mildly abated. The infection could spread to the  spinal fluid. I'd need a lumbar puncture to be sure it hadn't. One was performed and it was clear of infection. We had side stepped a bullet.

Saturday morning, my neurosurgeon came in. We discussed my options. The pump and catheter needed to be removed as the cause of my infection. Mind you, I had no symptoms of an infection...no pain nor fever, but a highly elevated white count was the only indicator. We had time to let my blood thinner work it's way out of my body while hitting this infection with heavy duty IV antibiotics for the best results. I would remain in hospital until after the procedure. The fact that I'd miss my ultrasound and cardiac appointments were a foregone conclusion. I'd planned too be bored out of my gourd for the 3-6 days for the blood thinners not to pose a danger to surgery.

It didn't turn out that way. I had a grand mal seizure. A subsequent CT showed a slow bleeding hematoma in my brain. I remember being asked repeatedly if I'd fallen on or hit my head over the past several weeks, but the only main possible event was my car accident at the end of May. Nothing else that could have caused my major concussion. A bur hole was ordered to drill out to evacuate the clot and reduce my brain swelling, but I suddenly altered consciousness before it could be performed. I had to be resuscitated because my heart stopped.

The pocket of infection ruptured. I have a hard time distinguishing fact from hallucination for the next week in the ICU. The year, my birthday and name orientation questions was hit and miss. At some point, they removed my pump and spinal catheter. This included an intensive abdominal flush of all the purulent matter in my body. I know because they told me. I was one sick puppy.

I had told my neurosurgeon about the possible return of the thyroid cancer so an ultrasound was performed. it showed cancer It fills the space where a normal or slightly enlarged thyroid would be. Nothing can be done until I finish an additional two weeks of IV and oral antibiotics is finished. I was discharged home on Thursday. Mel dutifully drove to Atlanta, picked me up, and drove me home in rush hour traffic.

Without the baclofen pump, the arm spasticity has returned. My arm is now once again curled into my chest and cramping painfully. I am on antiseizure meds until the hematoma finishes absorbing (another 3 weeks). They are making me extremely drowsy. My get up and go has got up and went. I can't seem to get my stamina back. Just the effort of walking to the bathroom and sitting at the computer is tiring after two weeks in the hospital. I've taken daily naps. I was told that they could replace the pump after I finish the antibiotics, but I'm hesitant. Dr Au Yong had sneaked into the neuro unit before my discharge. He's on paternity leave. He told me if I needed him in the next six weeks, he'd be there.

So all my apples spilled out of my cart. To date, I haven't had the energy to pick them up. So my my Murphy's Law, Neitzche lines have worn thin as I try to recuperate. I still have my throat surgery and radiation to look forward to...fun, fun. So now, it's trouble with tribbles as I continue to breathe another day above ground.

Sunday, June 9, 2019

Sunday Stroke Survival: Time Out

I've faithfully posted my Sunday blog each week for over seven years. I'm taking the month of June and July off.

Life has become too hectic. I've even dropped out of the Emory spasticity study. I'll be using the time off to make some lifestyle decisions and changes.

As y'all know, I've borne all of the financial burden for our homestead for the last 2 and a half years. Last week, I had a car accident in Mel's truck. I totaled it. I was moderately injured facial fractures, evulsion of my left eye, and various bruises and contusions. Once some of the swelling was reduced, the specialist was able to pop my eye back in the socket. My vision has somewhat been restored. I'm still being slammed with headaches from the concussion, and from my injured eye in anything brighter than 60 watts.

Thanks for hanging with me. I shall return.

Nothing is impossible.

Sunday, June 2, 2019

Sunday Stroke Survival: How Easily We Forget

I am now 5 weeks post baclofen fill up and 6 weeks post op. It's good and bad. I thought I was pretty much healed from the baclofen pump placement. It wasn't painful, just an occasional twinge every now and then to remind me when I over did or twisted too far. I was doing great. I was very slowly getting back to normal. Or, what normal was before the pain associated with my spasticity reached unbearable levels. Even my trapezius muscles in my affected shoulder settled to aluminum traps instead of steel traps lessening my headches.

How could you stay mad at this face?
One evening, Kassity, our 45-lb puppy, bounded into the house through the dog door. I was on the sofa. She saw me and galloped the 10' space at break neck speed. I didn't have time to use my nonfunctioning arm to cover my incision. Or, even put a knee up to halt her charge. Both of her front paws landed full force on my incision site and implant. The instant pain was so great that I couldn't scream or yell. Mel grabbed her collar and pulled her off of me as tears coursed their way down my cheeks.

It was several minutes until I could draw a stable breath, or even attempt to speak. I really couldn't fault the dog. She's a happy puppy with all the exuberance of a puppy just in a huge, still growing body. I predict she'll be 75-80 lbs once fully grown.

So that proved to me that I wasn't as healed as I thought I was. I moved fairly gingerly for a few days. I wasn't able to pick the rabbit greens without taking frequent breaks. I really dislike setbacks. Then later in the week, I was going down the back ramp after a rain shower. Can you guess what happened? You got it. I slide to bottom. I actually made it 6" shy of the bottom before landing on one of the most padded parts of my body. The only bodily damage was a rather nasty scrape from hitting my functioning forearm against the hand rail on the way.

Kassity was in front of me on the deck. She excitedly hopped sideways, and back and forth. (Sort of like Scobby Doo), stopping now and then giving giving me a full face washing, started sideways hopping again. "Oh Momma Jo, that was funny! Do it again!"

I was trying to set my feet to rise, but Kassity was having none of that and kept knocking my feet out of position. When she came in for another full face washing, I grabbed around her neck. Her instinct was to pull back and try to twist free. The forward momentum was enough to help me stand. Where's a will; there's a way.

It was later that night, my spasticity overrode both my oral baclofen and the pump, in spasticity control and pain relief. I was awoken at 2 AM in pain again 7/10. How easily I forgot this used to be my still functioning daily pain level. I added back the decreased baclofen. I managed a couple more hours of sleep. My functioning arm was stiff, with angry red streaks in a field of purple and black. Oh yeah! That's gonna smart for a few days. I had only just gotten rid of all the bruises that the hospital had done with IV attempts (6) and blood draws. Geez, I can't catch a break. Er, um, poor word choice.

Of course, this happened over Memorial Day weekend. Nobody in neurotherapy was in. Now if I wanted to drive 2 hours to Emory's ER someone could called in. I didn't bother. If the pump was damaged, they'd just put me back on the baclofen four times a day until the Medtronics' tech could test it. I just circumnavigated all that stuff. Now it means 3 trips into Atlanta next week. I know without the orthopedist doctor saying, it will delay his surgery until my baclofen pump situation is straightened out.

Fun, Fun, Fun!

Nothing is impossible.

Sunday, May 26, 2019

Sunday Stroke Survival: Orthopedic Visit Part 2


 (Un) Happy 7th strokenniversary to me. It's been seven years since my first stroke (ischemic) and a couple days shy of my hemorrhagic stroke that side tracked my life forever or seems that way. But honestly, but what's seven years compared to a whole lifetime? Just a small amount of time. A 10th or less when we spend 1/3 of our life sleeping 23 years! (based on 70 year life span which I'm fast approaching)

After my last orthopedic visit, I had the required CT and MRI. I just had my next appointment with him.They were going to lengthen the bicep in my upper arm (to extend my elbow) and the brachioradialis at the elbow (to extend my wrist) tendons. His exams are painful as he continues to test my limits of spasticity. He said there were no guarantees about how much time before the spasticity returned. So now I'm just waiting on a date. Once again I have to get cardiology and anesthesiology clearance. Cardiology is done and awaiting my appointment with anesthesia.

The surgeon said this is what the study was about. I would need intensive physical therapy and bracing. Followup visits 8 weeks post surgery, at 6 months, a year, and every two years for up to 5-10 years so long as the spasticity doesn't override the surgery. He said it was my best option for a fighting chance against the spasticity which is all I really wanted when I started this journey. I'm approved candidate #2 of 25 for the study. Another 23 should be added in the coming weeks, but it won't delay my surgery.

The news was not all good.The bones where the wrist joins the arm and several of the smaller bones connected to it had deformed from being so spastic for so long. So the full recovery of the wrist with full range of motion to the wrist and several fingers is not possible. He did mention a future possibility of joint replacement with a successful trial. So, there is hope for correcting that too.

My PCP ( primary care physician) has been practicing medicine for decades. He's just in awe that they could replace a wrist now. When I went for my six month check up, I told him I had just my baclofen pump placed. He got a confused look on his face. "I thought you were denied."
"Things change," I answered and told him about my new neurosurgeon.

I went on to tell him about the study and he was all smiles. "It's your shirt isn't it!"
"Every single moment of every single day."
He clapped me on the shoulder and genuinely expressed his happiness for me, and then he encouraged me to keep fighting.

I'm approaching this with eyes wide open and seeing clearly. For all the optimistic hopes, this is a study not proven fact or treatment. What I've typed is the optimal outcome. It might fail. I realize this, but am a willing guinea pig because of the hope it offers to post stroke survivors.

He apologized for getting so delayed in getting this study approved to begin. I shook my head and explained that I knew the study approval process. My husband had been in an NIH( National Institute of Health) study for his cancer. My nephew in law also is running a NIH study on septicemia. The hoops he has to jump through are horrendous.My youngest daughter had been involved in two drug trials on hemochromatic tumors in her brain. The first study she is the only one still alive. The second one cured her until the next time. It's a question team members, timing, facilities, and funding. It can take decades to get it all these details together. Getting approved candidates is the easy part. Everything in God's time. He appreciated my comment.

So, another detour in my living post stroke working towards recovery. Let's see where it takes me.

Nothing is impossible.