Sunday, April 28, 2019

Sunday Stroke Survival: Surgery Recovery and Beyond

The baclofen pump surgery was no picnic. It will take time to fully recover and I know this. The fact that I'm living post stroke, have a bad heart, and numerous health issues further complicates healing. I'm not to bend, twist, nor lift greater than 5 lbs for at least five more weeks. I finally got the baclofen pump filled and it's working.

While abdominal implanted device is healing, the post abdominal surgical pain continues to nag me. But the good news is the spasticity pain is a very manageable 2 or 3 out of 10. Mobility of previously locked tight spasticity is lessened allowing for more easier movement. I'm hopeful that with future tweaks with the dosage that this will get better with time and therapy.

I just completed my biannual health check ups with both my PC and my cardiologists. While my PC wants to try new allergy drugs on me to see if we can get more relief for me, he doesn't want to throw a monkey wrench in the whole baclofen study. My cardiologist, on the other hand after reviewing my hospitalization reports, has changed my blood pressure and v-fib meds to PRN (as needed). This is a honeymoon period my body gives me to adjust. After my first stroke, this honeymoon lasted six months. I'm happy to report that I'm back on blood thinners again. No more playing Russian roulette with another stroke.

I have my first appointment with Emory's orthopedics on the 2nd. So the trial study begins. I really hope this orthopedist is better than the jerk I dealt with last time. Sure, this time I'm a five month nonsmoker. It's also a case of them wanting me instead of me wanting them.  It gives me a certain amount of leverage. With specialists this is always the best position to be in. At least in my point of view.

So the excitement of the possibilities are still rising. I have a future to look forward to. May my improvement strides make it easier for other stroke survivors' lot easier.  At the very least, give them options and hope. I'll gladly be the guinea pig. It can't hurt me either.

Nothing is impossible.

Sunday, April 21, 2019

Sunday Stroke Survival: Why I Still Keep a Prepper's Pantry

I wasn't a hoarder as a prepper before my stroke. I never bought more than a year's worth of anything, except for paper goods but that came in handy post stroke. I could make my own laundry, bath, and dishwasher soap if I needed to in a pinch. In fact, I still do many of the things I wrote about in my book living post stroke. I actually challenged myself after my stroke to find ways that I could still function with adaptation.

So today, I'm living on a homestead eeking my way towards being self sufficient. Mentally and physically, I'm a lot better off for it. That brings me today's topic, why I still keep a prepper's pantry.

I watched a YouTube video of a large family mom creating a month's worth of freezer meals. She ended up creating 42 freezer meals in about sixteen hours. It was fascinating to watch. Watch for yourself here. All the time I was watching her I kept a watch on how much trash she generated, and how much time and money she wasted. With a garden and precanning ingredients, she could have saved hours of cooking. Granted, she just went shopping and picked what needed while I spent almost six months growing, processing, and prepping my ingredients, but to each their own.

I also make most pastas except for formed shells and macaroni. Grind my own flour. Make my own sausage and butcher carcasses of meat down to the minutest form. But again that me being self reliant, and knowing where my meat comes from. For this endeavor, I went "shopping" in my food store pantry. I used my handy dandy shopping cart to help me carry in all that I needed.

To prove my point and down sizing the recipes for two servings versus twelve,  I replicated her menus sort of. I added quite a few whole meat meals and seafood dishes. In Operation Empty the Freezer last summer, found me canning meats, spaghetti sauces, ground beef and turkey. I'll make about 2 cases (24 pints)of chicken, beef, turkey, lamb, vegetable, and pork broth on hand. They are the by products of eating real, whole foods and butchering your own homesteading efforts.

So what did I put in my freezer for a month's worth of meals?

Panned meals (32)
3 beef spaghetti bakes
3 beef lasagnas
2 beef and lamb meatballs with duchess potatoes
3 green chicken enchiladas
3 seafood stuffed pasta shells in a beurre blanc sauce
3 pork chops  with stuffing
3 seared lamb chops over Mediterranean couscous
3 beef burritos
3 cheese and spinach ravioli with meat sauce
3 grilled chicken thighs over yellow rice
1 shepherd's pie
2 chicken pot pies
Bagged meals (10)
2 shrimp and smoked turkey sausage jambalaya
2 shrimp lomein
2 grilled chicken and vegetable stir fry with rice
2 marinated London broil with roasted vegetables
1 chicken marsala with rice
1 herb marinade lamb shoulder with peas and duchess potatoes

For a total of 42 meals!

The difference in what was produced... I made my own ricotta and mozzarella cheeses, sour cream, and yogurt from locally sourced pasture fed cow's for milk. All the beef, lamb, and pork which we didn't raise were antibiotic and chemical free. 80% of the seasonings and blends used were done by me. Total time to put it all together was 5 hours after raiding my prepper's pantry. Of course, that doesn't include time and labor to procure and process it all.

 I also included desserts (4 total-cheesecake, peanut butter and chocolate chip cookies,  peach and apple turnovers) and breakfast menus (waffles with sausage, pancakes with bacon, crumpets, and french toast) to my freezer which added another 2 hours. Plus, there's always the fall back of granola, or grits and eggs for breakfast too.

With possibility of surgeries, injuries, blah days, and who knows what days ahead, it's nice to know that these meals are available when Mel or I need them. You never know what life is going to throw at you or when. Keeping a stocked panty pays dividend.

Nothing is impossible.

Monday, April 15, 2019

It Seems Like Just Yesterday...

 It seems like yesterday I was telling you about my Baclofen pump trial. Wait a minute, it was just yesterday.What a difference 24 hours can make!

In a flurry of phone calls this morning, I am now set for the surgical implant of the baclofen pump THIS Friday!!  It's it fabulous the way God works? What I thought two weeks ago was an impossibility is now going to be a reality in a few days.

I have even better news, hold onto your hats, I'm going to be part of a spasticity study between neurology, orthopedics, and the rehab team for post stroke intervention.

Dr. Au Young, God bless him, was chatting with some colleagues from orthopedics over lunch. They were telling him about a new multidisciplinary study they were undertaking regarding post stroke spasticity. They wanted to know if he'd like to come on board. He jumped at it. He told them that not only was this a close to his heart interest that he also had the most excellent candidate for them. Of course, he was talking about me. He went on to discuss my case with them. They in turn got excited about me too.

I've been open to ANY possibility to help me recover from my strokes and the damage that they caused for almost seven years now. My first call this morning, 9AM, was from Melissa, Dr. AuYoung's assistant. She wanted to know if I wanted the pump. I told her yes. The next question was I available for surgery this week. I answered in the affirmative. She said she'd she'd pass the message along  to Dr. Au Young.

Within an hour he called me back. I could hear the excitement in his voice. He told me about the other orthopedists, the study, and what they wanted to achieve. He hoped I didn't mind him talking about my case to them. It was a clear HIPPA violation, but done for our mutual benefit. I forgave him. I told him discuss me away if it would help me regain a portion of my life. He asked me a few more questions and we hung up. Both of us thoroughly excited for the hope and the possibility.

He called back within an hour telling me that he had an opening this Friday as his first surgery. Yes, it will mean, for us, rising at 0 dark 30 to make the drive into Atlanta. Mel can just drop me off and drive home. She shouldn't run into any huge traffic snarls because the major flow should be going into Atlanta not out.

I'll be in the hospital for a few days at a minimum so I'll be spending Easter there. That's okay. Christ arose on the third day to bring hope to all mankind. I'll be spending Easter with a renewed hope of another kind. This one personally  for me. It seems kind of appropriate. The fact that it'll be done prior to my birthday, makes it even better. Now begins the rush to prepare for surgery.

Nothing is impossible.

Sunday, April 14, 2019

Sunday Stroke Survival: 11th Hour Switch Up

Okay, y'all know I'm a Murphey and not excluded from Murphy's Law, right? Thus is the case of my trial surgery. My surgery time was changed from 7:30 to 9. No biggy. More traffic but we didn't have to get up so early. The two days of rain prior to leaving for Atlanta did pose a problem for making it up the driveway in my van. It meant we'd have to take Mel's 4-wheel drive truck. Mel's fix for me was to build a step out of pallets to make it easier for me to get into the truck so long as we were together.

Now if you've ever been to Emory, you'll know you are dealing with four multi storied buildings with sky bridges connecting them to each other on the second level. Park in the wrong spot and you've got a hike and a half through a maze with various construction projects underway. Guess what we did? It was a fifteen minute hike to get to the right set of elevators. To top it off, it's springtime and so something was pollinating that my asthma didn't like. I awoke with a thin wheeze, by the time I reached the surgical waiting room I was gasping for breath. I had left my inhaler in the truck and a valet attendant parked it God only knew where.

I managed to check-in for my surgery 10 minutes late. So we are sitting there expecting my name to be called any minute. After thirty minutes had ticked by, my name was called. The fellow stopped and checked his computer screen. He turned, apologized, and he asked me to be seated again. The hours passed. I even took my second doses of Baclofen and Dantrolene for the day. Imagine the check-in folks were tired of us checking with when I would be called. Finally, I was next in line. TWO PM! We both could have slept in! I could even eaten something later instead of being NPO (nothing by mouth) since midnight!

I was put into the gown and the anesthesiologist came in to talk to me. I was being prepped for a Baclofen pump trial. This was news to me, so I corrected him. That started a whole new argument with two of my neurosurgeons, the Baclofen pump Dr, and me. Those prep rooms are not very big to begin with me rising to my 10' tall battle stance made it seem even smaller. I felt I was lied to and not been kept in the loop. Two things I despise. I was on the verge of walking out.

Finally, Dr. Au Young, my neurosurgeon for the day, stepped up. He put a calming hand on my shoulder. His eyes told me he understood my feelings. He said the one thing that explained it all. "Insurance requires this step first." This deflated my anger. I understood and agreed.They were placing a catheter in my spine up to the cervical spine. Of course then, respiratory therapy had to be called to control my tightening bronchial tubes before anesthesia.

I woke up in recovery. Everything went fine. Then, they dropped the other shoe. I would have to spend the night. It was too late to do the 8-hr test. GRRR! I told Mel to go home. We had critters to tend to. This had taken far too long already. It was now after 4 PM. We figured Kassity, the new puppy, had destroyed the house at the very least. I hadn't brought anything with me.

It was almost 9PM before they had a bed for me up on the neurology floor. It was 3 hours past time for my next dose of Baclofen and Dantrolene, but coupled with the additional stress my arm and leg were in full spastic mode. My pain levels were hitting 10 out of 10. All my meds had to be ordered. It took an hour to get 1 Baclofen. I was curled up in fetal position whimpering. On her next neuro check pass, I told my nurse that I want the next two things before the next 30-minute neuro Dantrolene, and something to eat with a Diet Coke full caffeine in that order. One look into my pain glazed eyes told her not to argue. My pain was reduce to a high 8 or low 9 by the Baclofen. I didn't care what hoops she had to make it happen.

If I had known I was spending the night, I would have brought my med box with me. I know how the hospital system works. I eventually had to call for a bed pan. With my AFO stuck in a bag on the couch and the rails up on my bed, what other choice did I have besides none. The nurse tech came in and lowered the head of the bed so I was flat on my back. It's probably the first time since leaving surgery. As I laid back preparing to roll on my side for bedpan placement, it hit me. The dreaded spinal headache. It crept up my neck, around the top of my head to end just over my eyes. There it sat threatening to take my head off. Migraines had nothing on this headache. As I filled the bedpan, I was fighting to hold down the Dantrolene and turkey sandwich the nurse had brought me.

The job at hand complete, the tech took my vitals. I told her to send in the nurse and raise the head of the bed back up. I told the nurse my problem. She asked what I took at home. I told her nothing unless it was really severe. She asked if my headache. I answered yes. She would have to call the doctor and get it from the pharmacy. I settled and asked for a cold pack at my neck. At 3AM, it wasn't worth the hassles. I just wanted this whole fiasco over with. The headache eased off a bit to where it wasn't threatening to blow the top of my head off with the head elevation. This is just the opposite of most people. What can I say, but I'm the Queen of Abby Normal.

About 8ish, the Baclofen pump doctor came in. He apologized for not starting the trial yet. He was waiting on the micrograms of Baclofen he needed for the trial from Emory's pharmacy. This was the same Baclofen pump doctor who said it wouldn't work on me months ago. A real confidence builder, huh? He said if he had known Emory would have so much trouble, he would have brought some from his office across town. Hindsight is 20/20. For me, it was Murphy's Law, but he'd be better prepared next time.

But once again they were withholding my Baclofen and my pain levels were escalating.

By 10, someone had scurried over from his office with the vials. So the trail began.  It would take four hours to reach maximum effect. All during those hours, I wanted it to work. I actually wanted something or anything to work. Surprise, surprise, the pharmacy actually got all my meds. No blood pressure meds or heart meds because my vitals were low and my EKGs  didn't warrant them except when I was in extreme pain. I ran a couple hours of nasty looking strips which is normal for me. After that, my vitals continued to be low until I was able to walk around.

So I waited and tested the flexibility of my arm. I kept hoping to have my arm to flop down besides  me. For me, that would be a successful trial. It didn't happen. Instead at the four hour mark, my wrist moved! It went from a locked 90 degree inversion. To easily into neutral. As far as my bicep and pectoral muscles go, there was enough relaxation for the unparalyzed shoulder to do a partial range of motion. I think to Baclofen pump doctor was as shocked as I was.

When Dr, AuYoung, neurosurgeon, returned to pull the spinal catheter at the end of the trial, he was all smiles. He said the the trial was a resounding success. I told him about my disappointment about not being able to straighten the arm. He retorted that he wanted a rocket ship. Again the hand on my shoulder, he told me with time and hard work it will happen. Baby steps. This was a start. You gotta love this neurosurgeon's bedside manners.

On the down side, there was a slight visual distortion  with the high doses of baclofen being so close to the brain, but no cognitive defects. I'm still playing Russian Roulette being off my blood thinners. I'm still trying to get my energy back. I can't believe how draining this ordeal has been. I'm praying my muscle memory has survived these years of fighting spasticity. Both my thighs feels they are on the verge of cramping and my right hip is still quite painful. They are slow to move also. I'm wondering if it's where they went into the upper lumbar spine.  with the catheter. It's just been traumatized. The baclofen doctor confirmed this later during many of my followup calls. I'll asked Dr. AuYoung to enter the thoracic region next time. The spinal headaches continue. Although they aren't constant now. I think a blood patch will fix this next go around. It doesn't hurt to discuss it.

After almost a week post procedure, these symptoms should have abated by now. The baclofen doctor dispelled this notion. It could last several weeks, but should disappear totally within a month as he swelling and cerebral spinal fluid adjust to normal.

My follow up appointment is the 22nd for a final go ahead on the Baclofen pump, and then intensive PT once again. We've come a full circle in the past two years. I'm ready to move forward and beyond in this post stroke saga.

Nothing is impossible.

Sunday, April 7, 2019

Sunday Stroke Survival: Getting Ready to Go Under the Knife

No, Not really. No scalpels involved this time. It's more like an epidural you get during childbirth. The only problem with this is that all five of my children were born via natural childbirth and no drugs. I have no idea what an epidural feels like although I've assisted in a few.

On the other hand, I've had slews of steroid injections and four back surgeries. It can't any worse than those. But still, I can't help being a little nervous even after discussions at length with the neurosurgeon last week. Even though this procedure has been done since the 1960s and my surgeon has done thousands of them, there's always the oops factor.

The fact that this trial is done with a local anesthetic is comforting to me. I'll be awake to hear what's going on. For some people, they take the attitude of wake me when it's over. That's not me. I've wanted to be awake for all my surgeries even though the surgeons wouldn't let me. Darn! I've just have this thirst and curiosity for medical knowledge. I have this uncanny ability to recall what was said and sounds while under anesthesia usually within two weeks post op. I've shocked more surgeons at my post op visits by telling them their music choice and snippets of conversions during my surgery. This time I'll be awake for the full hour. I'll even be talking to him and the tech. I like that.

From what I've read, the worst part of the whole trial is the tape (and removal) and not being able to shower. Honestly, I can handle the no shower. I regularly do birdie baths, pit stops, or sponge baths during the week and fully shower for my Saturday night (afternoon) bath. It just takes too much energy and time to shower more often unless I get truly filthy. With the advent of spring, that time is upon us again on the homestead.

I expect to be a little sore the morning after. I usually am after the shots in my back but nothing I can't live with. It's minor if it relieves the constant pain and spasticity I'm dealing with now. I'll spend the week playing with the programs for pain relief and stimulation settings. Then about a week later, I'll give my results to the doctor. Whether a permanent, implantable device decision is up in the air until then.

I'm ready to take my life back!

Nothing is impossible.