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 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 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 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 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.