Monday, August 30, 2021

Sunday Stroke Survival: Breathing a Bit Easier

 Sigh! Better late than never.

The past two weeks, I've had a difficulty breathing. Yes, all that extra fluid from my ill heart finally hit my lungs. I knew it was happening and knew it would without a cardiologist's help. Lasix in high doses can be a scary thing, even for me. My wheezing got so bad, I could barely manage ten steps to the bathroom without getting raspy breaths let alone back to my seat again. I hit my inhaler so often I barely needed the drugs to raise my heart rate. My inhaler is albuterol so it raised my heart rate and blood pressure. Yes, it was that bad.

I've finally got a local cardiologist!!! Or, will have after the 13th. I just have to hold out until then. What was really shocking to me was my weight gain. Now knowing I have a heart issue, I weigh myself every morning. For me, it's the best indicator of how much of a fluid load I'm carrying. I went to my late afternoon neurology appointment and as part of my check in I got on the scale. I can usually count on a 1-5lb variance between my at home scale and any doctor's office scale. But the reading showed as 15lbs higher!! There was no way I could have gained 10lbs in less than 12 hours. This was fluid weight. My feet were puffy and my middle was muffin topped over my jeans. No wonder I was huffing and puffing over the walk to the treatment room, several hundred feet. When listening with a stethoscope my lower lungs sounded wet like I'm going into CHF (congestive heart failure).

With my midodrine and metotoprol taken early in the AM by the appointment time, my heart rate and BP was in normal limits, 72 & 124/80. Imagine what it would be without the drugs and the walking. So when I got home, I doubled my old dose of Lasix to 40 mg and spent the next 8 hours peeing every 10-20 minutes urinating. The next morning, I held off the Lasix until noon because that's when the weight piled on from fluid back up began. It was after I started my daily routine and I was up on my feet more. Sure enough, my wright was up 5lbs heavier than my first rising weight. By 1PM, my weight was up  7lbs when I took my 40mg of Lasix again. My side note was that I noticed my affected foot's shoe began feeling tight. I'd found an important indicator to the fluid build up. 

After looking at the situation realistically, I bought diapers to see me through until my cardiologist's appointment.  You see I don't know how to juggle my meds any more than I've done so far. I may need some other medical intervention like a pacemaker or a total change in medications. Both of those take a doctor. Since my bladder sling tore, my urge to urinate and actually going is about 30 seconds. It's no longer a small to medium gush of urine, easily handled by a pad. But with the Lasix, it's a GUSH that lasts several seconds and repeats with every step until I reach the commode. Think of turning on the tap full force for a 5-second increments. Even having 20 pair of panties and pads can't keep up with the flows with the Lasix. Even with a diaper, pants or shorts are left in the drawer for at least the first four hours after taking the Lasix. It's just one more thin between my backside and the commode and every second counts...even diapers have their limits. I have thought about upping my dose to 60mg of Lasix but I'm not comfortable with that without medical supervision, I'd bought a 90-day prescription the week my old cardiologist changed my dose to as needed so I have plenty.

I've been watching the flooding with Hurricane Ida, I've been going through the similar battle with my body. I hope the cardiologist has an answer I can live with...anything less than a transplant and open heart surgery. This is where I draw the line and refuse. But at least now they know what causes my v-fib and cardiac arrest during surgery...a drug allergy to propofol, an anesthesia med. Sharp, good work Emory team for the diagnosis! It was traced back to my egg yolk allergy. How's that for great detective work?

For now, I'm breathing easier and moving again. I caught russet potatoes on sale this week so I canned up some more French fries and some great waxy, baby potatoes to can whole. Every little bit counts.

Nothing is impossible. 

Sunday, August 22, 2021

Sunday Stroke Survival: I Am Okay with Dying

 You know it's strange the thoughts that filter through your brain just before falling asleep at night. Sleep for more than a few hours is impossible right now. I'm fighting the painful the cramping of spastic muscles. Come on Tuesday plus a week for Botox to kick in. 

This was the case tonight. I slept for two hours. But as I fell asleep the thought struck me that it was okay if I died. Upon awakening, the thought hung with me and I decided to explore just why I took such comfort in that thought. I was really at peace with it. I mean, sure, I was  awake anyhow. I was in pain, but at three AM I wasn't about to take a pain medicine that would knock six hours and leave me hungover for ten.  I have a low tolerance for pain meds. I decided to gets up and put my arm sling back on. It did nothing for the cramping, but the additional support helped ease the effects of gravity. Putting on my AFO was a feat worthy of a circus contortionist because my big toe goes upward and the rest curled under as my foot strained downward and inward in the cramping position. Massaging the arch of my foot and my Achilles' tendon helped expedite the process some. It's more like feat in perfect timing than actually relaxing the foot to get my affected foot into the 90° orthotic when my foot and ankle are like this. But I manage.

I hobble to my computer by way of the refrigerator for a drink. The Velcro crackles as it fights against the muscles trying to pull my foot out of position as I walk. I finally plop down in the chair and the spasm relaxes a bit as I take the load bearing duties off my affected leg. Three more hours until I can take my next dose of muscle relaxers. The cranberry juice and tonic water will help some too.

<I'm wearing my "This is NOT the life I ordered" t-shirt as a night shirt.>No, I'm not on the pity pot. I'm just telling it like it is in my living post stroke life.

I'm in my rational/analytical thinking cap. Back to the thought in question. Why had that thought about it being okay to die bring me comfort? Most people would be terrified or fighting against the thought of dying. But that isn't the case with me. It may not been the life I ordered, but I've made the most of it.

  • I know what awaits me...heaven. I have no doubts in my mind of that outcome.
  • I've lived a full life with no bucket list of unfulfilled desires. I've never believed in a bucket list. I've lived my life fulfilling my desires short of a full recovery from my strokes. With the birth of great-grandchildren, it completed my parenting journey. My adult children and half of my grandchildren are set, and a firm groundwork has been laid for the rest.
  • I'll be with my beloved again. This is my greatest wish. I feel we were short changed in our lives together. We only had 25 years, but there should have been so much more and eternity sounds great...that might be enough time together. I miss him terribly with each passing year.
  • I'm ready to die. No, I'm not suicidal just tired. I've had more ups and downs on this roller coaster life than most folks more older. And yet, I'm thankful for the growing experience each has taught me along the way. I've been rode hard and put up wet in my stall too many times. 
  • I feel like I'm just biding time. I'm still doing because I'm still breathing. My life is completed.
I feel I'm blessed by this realization. It's satisfying to have a sense of completeness and accomplishment. 

Nothing is impossible.

Sunday, August 15, 2021

Sunday Stroke Survival: Waiting and Combating Frustration

Better late than never.

I know I'm not the only one that combats frustration while in a holding pattern. I haven't written here or anywhere else in a couple of weeks because of it. For me, it's doctors, or should I say getting new doctors in my new locale. I mean all of my old docs treated me like I was going to die instantly if I didn't do this or that immediately. And yet, it's been three months since I've seen a doctor an I'm still here. So much for being a sick, dying, old woman. 🤣   Now, that's not necessarily true. I am a sick, dying, old woman who has a complicated medical history. I just haven't had some doctors tell me so in months.

The stress it could cause not only frustration, but anger, grief, depression and a whole lot of harmful baggage nobody needs. It is like a weighted blanket, not the good kind like PTSD patients use. These other issues can eat you alive, hamper recovery, and cause actual damage to your body.

So how do I beat it? Or, at least not let the frustration beat me up and consume me? I often say that it's all a matter of perception and mind over matter. Your brain is a powerful a part of your body. Even a damaged one like for us stroke survivors or should I say, dead gray matter. In a lot of ways, we're better than everyone else because we've beaten the odds and we survived the game of life's roulette table and we're on our way back or getting a do-over. Although, it doesn't feel like that sometimes. But, life is what it is and all you can do is make what you can of it. If you aren't happy about somethings in your life figure out what you can do to change.

Keeping mentally and physically active starve frustration. By being active, you don't dwell on the problem feeding the frustration. So what am I doing? 

For the mental half, I printed a list of all the cardiologists and PCPs in the area. I run the list by my daughter, she has lived in this town for 17 years, half of which working in the medical field.  At the very least, she knows who the real stinkers are. This information is worth its weight in gold and those names are stricken from the list. It narrows down the list considerably. Then, I'll let my fingers do the walking. I'll give each practice three working days to respond and then move to the next name. When I gave my daughter my list I had her rate the doctors by stars three stars meant the practice was the ultimate and no stars meant they were passable. If she knew nothing about them, they got a question mark. I have to say there weren't many of these. So far, I'm slowly making my way down each list. I'll play computer games to rebuild and strengthen weakened areas of my brain, or watch a movie on Netflix, Amazon Prime, Disney. or YouTube. But, I'm doing something with my mind other than feeding my frustration.

I'm in a Catch-22 situation as far as the physical side of the equation. To walk and do I need adjustments made to my AFO. To get an appointment to an orthotics place (Hanger or another of 4 options), I need a PCP because my podiatrist is just  a DO not a MD that insurances demand. I need dry needling or Botox to make the spasticity in my foot and ankle behave which would help in the meantime. That isn't possible until after the 24th when I see my new neurologist (another waiting game). 

My brace not fitting right allows me to stand and walk in twenty-minute increments. So I'll sweep my apartment and sit down with my foot elevates above my heart for an hour. Then, mop my wood floors and back down again. And, so goes my days. By 11 PM, I'm exhausted by the up and downs, and I'm ready for sleep. At 5 AM, I'm back at it again. By the time the sun is high enough in the sky, I'm puttering around pilling this or that weed, talking to the plants, and communing with God, I'm still keeping my twenty-minute on and off my AFO clad foot. During the lull, I've got my phone app tuned to His radio and I'm praising Him the whole time I'm off my foot sitting on my outside door steps. I tend to push my limits when cooking or preserving. Especially, with the final touches. I pay for it by having to prop my foot up for the next several hours.  The dishes don't get done nor food put away until I've gotten the swelling and pain down. I'll be good for twenty minutes or so before I'm back in the chair. I'm really missing my wheelchair or beloved's rollator because I could sit and do. They got left in the barn during the move and we haven't had a chance to go back and get them yet. Mel is still holding onto them for me. 

But for now, I'm doing without. I think Medicare part B would pay to replace the wheelchair. It was bought 9 years ago not under Medicare. The rollator was my husband's as the shower chair, and bed side commode was too. so my Medicare should pat to replace them, shouldn't they? That leaves me with the problem of who writes they prescription to order them? I'll see the neurologist later this month and I guess I could talk to them when I ask for a PT order. Or, does PT order them? Or, does my PCP, if and when I find one? It was so much easier when I was in the hospital before I was discharged home after my first stroke. Sigh! 

Breathe, Jo, breathe. This kind of thinking is a trap to fall back into frustration. Okay, it's time to get busy. I couldn't manage to do the dinner ,dishes last night. Everything was rinsed off and stacked so they are ready to be washed up and then there's a peach cobbler to make for dessert tonight. That will keep me busy until the rain stops. tuning in the app on my phone. Here we go, another day's work begins...

Nothing is impossible.