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.

Sunday, May 19, 2019

Sunday Stroke Survival: Questioning Stroke Survival

If you are a regular reader of this posting, you know I regularly play devil's advocate here. Today I'm questioning why I survived my strokes. I'm delving into why did I survive my strokes when it  would have been much easier to have died. As of today, I've survived six strokes. Am I just lucky, or unlucky, or what?

I honestly haven't got an answer other than I haven't fulfilled God's purpose for me on this earth yet. I play the devil's advocate game to help me understand and see the whole picture. Others make lists of pros and cons.I have been luckier than most. The multiple strokes have hit in redundant functioning areas of my brain and just reset set my recovery. Meaning a new stroke attacks a part of my brain that has a backup already in place, or I am just recovering functions over and over again that I'd recovered.  I'm in a constant battle in relearning and rerouting/reawakening neural pathways. Yes, this is very frustrating! At times it's so frustrating I pray for death. I'm tiring of the relearning process.There. I've said it, but I'm still here so I keep fighting.

First,  baclofen pump update. Now, I'm four weeks into a fully functioning pump. I noticed a weakening on my functioning side. I'm constantly listing to the left side (functioning) and having to correct my posture. I'm not able to lift as much weight with my functioning arm. I'm having difficulty rising from a prone or seated position. This may be because I had gotten used to functioning against the spasticity, or maybe the oral baclofen I'm still taking at maximum dose is too much, or it could be that the cervical placement is just affecting both sides equally. The last was a side effect of the pump discussed in my preop as possible side effects.

I quick called to my baclofen pump doctor have them reduce my oral baclofen by 20 mg to see if it helps. After a week, most has subsided with the decrease. So, I've got an appointment to raise my pump dose to get me off the oral baclofen. Conversely, or on the positive side, I can now manually move my wrist 10 degrees. The elbow flexion is still being stubborn. My constant pain levels have dropped to a 0-2!

Sunday before last, I published my frustration at showing so little progress I've had after my baclofen pump surgery.  In that post I mentioned the pros and cons in being three weeks post op and two weeks having the standard, initial dose of baclofen.That prompted a response from Rebecca Dutton, a fellow strokee. I've been in awe and full of respect of this writer for almost seven years since my first stroke. She was the first stroke blogger I read and conversed with regularly. Her expertise as an OT aside, she'd survived two brain stem strokes.
As an OT I had no idea how much problem solving a stroke requires until the day we die.

In response, I wrote back...
As most stroke survivors, I almost wished my strokes had kill me. As someone who watched her grandmother fight her way through six strokes take away bits and pieces by reoccurring strokes until a massive 7th stroke finally took her home,I'm well aware of the ongoing fight. It must be where I get my fighting spirit comes from. I still fighting after my 6th and trying to live each day the best I can.
 I often quote Nietzsche, "That which doesn't kill us makes us stronger." Or my prayer before surgery or after any perceived life changing event, "Lord if I don't awaken from this, I'll happily be with You. If  I awaken, I'll know my job on this earth isn't finished yet." My life functions on faith.

Still as Rebecca says, any recovery is a constant battle. You would think that once the brain reroutes neurons to make a movement possible that after some repetitions it becomes recovered, but that's not the case. This is why stroke recovery is so frustrating.

When you break a bone, it heals and you go on with your life. This is not the case with the brain. It's a life long fight to hold onto recovery. You fight holding onto  that recovery until you draw your last breath. You will battle every day between being able to do and not being able to do. But you fight everyday for something, don't you? That's called living, right? Everyone has their burdens to bear and this is ours.

Geez Jo, you are being a real bummer today, ain't ya? Yes and no, I'm just telling y'all what it's like living post stroke. But it's not all bad. Every morning you awaken to new possibilities. Bumble bees buzzing around you doing their daily tasks. Birds fly and sometimes settle near singing their songs. Flowers give you their fragrances and blooms for your enjoyment. Life goes on. So when questioning your survival after your stroke, look a closer look around you. What a gift you've been given for just a new day. So I'm not wishing for death today. Today, I'm living life to the ultimate.

Nothing is impossible.

Sunday, May 12, 2019

Sunday Stroke Survival: Publishing, Selling Articles, and Guest Posting

I've recently received several comments, requests, and guest posting requests. In actuality, it's several requests a month over the lasts several years. As an author, I'm flattered. As a stroke survivor, I'm honored by the requests.

As a previously hybrid published author, I know what sells well and what doesn't. Another self published memoir of a stroke survivor just doesn't have the market niche that equals sales. It's a vanity press offering at best. What made my my proposal for Don't Get Your Panties in a Wad go to a bidding war between publishers with only the first draft of 30K words was it was a niche nobody had hit on before. It was a humorous point of view. Unfortunately, a third stroke left the book unfinished and nonpunishable.

While I write and syndicate a stroke survivor's blog/article each week, it's not the same as writing a book. Writing a book takes planning, outlining, and organizing. None of which I do well anymore. My blogs/articles can now take several weeks in the writing and editing stages before they are published. The confidence born of over 30+ years in publishing is gone. Words that magically popped into my brain in an instant may now take several hours or days to materialize.

So why struggle with doing it at all? It's important to me and others. It helps caregivers to understand their loved ones who may not be able to voice their thoughts. It helps other stroke survivors feel they are not alone. It may allow other stroke survivors to even look at their life in a positive light. The hundreds of emails I get each month can't all be crazy or trying to promote something. On average they are split 50/50 between stroke survivors/caregivers and medical/health care providers. While comments on various blogs may be in single digits, the emails and hits on any blog/article may reach into the hundreds or thousands. That speaks volumes to me and urges me to continue.

I do write guest posts and do some personal appearances. I don't always mention them here. I am no way an "expert" although I accept the title of "advocate." I firmly believe everyone should be self advocating. Yes, I'm Dr Murphey with a PhD in theology, but prefer being called Pastor Jo. I have a lot of real life experiences that allows me to speak on a wide range of subjects but an "expert" that's stretching if in the broadest sense of the word. I do require two weeks notice on guest posts and at least two months notice on guest appearances.

I've always said that I could wallpaper a room with all of mine.  I recently threw out a box of mine and my husband's. That's how much stock I held in all the Associates, Bachelor's, Master's and
PhDs we held. It just added to papers we held onto to prove our man made gauges of how smart we were and the ability to add letters after our names to make it official. Who really cares about an a BSN and all the sub specialization letters after my name if I save your life? Isn't saving your life enough? It only matters to relicensing boards, and if I'm looking for a job even though graduation for some is dated in the 1970s if I still maintained my licenses for a fee. Computer programming langues I learned in the 1980s only were useful until Y2K. Made a killing with that (Grin). Now that information is obsolete. Accounting I learned in the 80s has been replaced with software that even a monkey can do. Still, once upon a time each of of them had value, but not so much anymore even with publishing anything. Everything is but what have you done lately?

So now I write about what I do everyday living post stroke and homesteading. Yes, I could do it for money, but unless I can clear five figures a year doing it, it doesn't pay for me to write for profit. Once upon a time it was possible, even upwards of 6 or 7 figures, but now I'm living  post stroke.  I realize my limitations for now. But..
Nothing is impossible.

Sunday, May 5, 2019

Sunday Stroke Survival: Baclofen Pump Update and More

Well, it's been three weeks since the baclofen pump was placed, but only two weeks since the pump was filled with the baclofen. The results on a whole was results thus far has been lackluster except for pain relief. I'm still on my oral baclofen while the 25CC of the saline works it's way out of my spinal fluid. I was forewarned about this. But I'm still chomping at the bit wanting to get on with it.

I have noticed that the rigidity in my elbow is less. I keep having to work at holding my bunny greens basket from sliding off my arm. This was the same arm that could carry 5-7 splits of firewood a couple of months ago without budging. So that's progress.

Another issue I had was with the elasticized binder placed around my midsection after surgery from bra line to mid hips. While it's not uncomfortable it does shift and bunch up as I move around. The added support is quite comforting while I'm moving if it didn't shift so much. The neurosurgeon's assistant did say I could take it off when sedentary. There is a major malfunction with this. While affixing the velcro with two hands is easy. But I only have ONE functioning hand. So I lay on my back tugging at the edges until it's halfway unbunched but I can't fasten it. Of course, I could always ask Mel to help, but the timing is always off when it's at it's worse.

Yes, I'm just in a griping mood, can't you tell?

I was told I could drive again. Considering I drove myself to three Atlanta doctor appointments not withstanding. (Grin) I wasn't on narcotics. I'd only taken 3 of the prescription of 12 morphine tablets, and had reduced my Valium intake from 4 to 1 a day, I thought I was safe enough to drive. Coughing, sneezing, and a good old belly laugh are PAINFUL. Off times they are without warning so I can't brace for it. Other than extreme fatigue from big city driving. No other ill effects. I got home and took a nap, but I did. The neurologist's assistant  gave me permission to drive. Doh! When I explained that it was planting season and we had 1/4 acre to plant, she grudgingly gave me permission to bend and lift ten pounds within reason. If I experienced pain, I was to stop and rest. You gotta love doctors that work with you.

I have to admit that I over did last Saturday and paid for it with extra pain. I did take an extra valium at bedtime to compensate for it. Ever since my drug addiction problem 30+ years ago, I'm strongly against any habit forming drugs. I have to be really bad pain before I take any form of these drugs. Drug withdrawal aside, it's just an aversion to all things habit forming.

 An exciting bit of news, I saw Dr Daly, the orthopedist. His plans for releasing the contractures to allow movement to the wrist and fingers is awesome! Of course, I'll need a higher dose of baclofen via the pump first. He was surprised at the lack of contractures in the elbow. He had high praise for my PT and their dry needling therapies. His hopes for recovery of strokes and spasticity was contagious.

After almost two years of going through the motions, I've finally hit the right combination of doctors. While I absolutely loved my previous rehab team, I'm hoping this new team will be just as fabulous.

Hope and possibilities abound once again. Stealing back increments of success from spasticity is worth it.  Recovery is worth it. Being on the forefront of new and innovated treatments for survivors living post can, with positive results, give another option to survivors world wide.

Nothing is impossible.

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.

Sunday, March 31, 2019

Sunday Stroke Survival: True Confession Time-Doing the Laundry

Time confession time. I hate doing laundry! I washed clothes, on average, three loads a day when my children were small. I never enjoyed the task even when I could afford an automatic washer and dryer. There's something so mundane about this chore. All the sorting, loading the washer, putting them in the dryer, folding, and putting them away. It's made even more difficult living post stroke.

Now, I do laundry once a month very grudgingly. It's two or maybe three loads with my comforter. I'll put off doing the laundry until I down to my last pair of clean
panties, socks, or pants. I hate this job that much. This is why I used to use a laundry service at my old place. I haven't found on here or I'd use it gladly. I imagine there is one because there are several laundromats here. I have not stopped to ask.

The price is a trade off in saving me the aggravation and what I consider a waste of my valuable time. In reality, this is a cop out and I know it. I know it should be done like changing your underwear every day.

Strange as it might seem, I don't mind ironing. I kind of enjoy it. I used to iron my sheets and pillow cases. I love ironing handkerchiefs. There's something almost cathartic about it.  The steam gives a great facial too.  Crazy, huh?

In this world of permanent pressed everything, I love ironing. Still I find some things to iron the day after laundry day. I use a knit fitted sheet on my twin sized bed, but the flat sheet is cotton. My pillow cases are cotton also so they get a pass under the iron. My permanent press shirts are old so the collars, cuffs, and button bands need a light press, not that I have many. It's not a lot, but enough to keep me happy.

Well, enough procrastinating, time to do the laundry.

Nothing is impossible.

Sunday, March 24, 2019

Sunday Stroke Survival: Some Quotes and My Take on Them

 I really don't have just one subject for today.  I have many. Namely some quotes that I've accumulated over the years and why I chose them as important to me. With a little luck, they may even help you living post stroke or brighten your day.

These are in no particular order.

On beauty...

“Beauty begins the moment you decide to be yourself.”
 ~ Coco Chanel

Coco Chanel wasn't a raging beauty, but a popular fashion designer, but I love this quote. It ranks right up there with me as "beauty begins within."

I've really never been a fru-fru type of type of girl. Maybe in my teens and early twenties did I overly use "war paint" or wear designer clothes. But that was short lived and expensive. I prefer the "look" of 'what you see comes from within.' I could never be described as a ravishing beauty or a beauty queen. I am what I am and don't try to be anything else. I do on occasion wear perfume, eye liner, or lipstick, but those occasions are few and far between. The garden, chickens, and rabbits don't care what I look like so long as I care for them.

On happiness..

“Many people lose the small joys in the hope for the big happiness.”
  ~ Pearl S. Buck

Pearl S Buck was a Pulitzer Prize novelist who had a definite way of turning  a phrase. She's one of my favorite authors.

I prefer the small joys of life along the path of my life. They nurture, refresh, and sustain you on your way. I believe the big happiness is the culmination of these. Remember I talked about detours in your life's path a few weeks ago? Surviving a stroke or any major mishap is a detour in the way you thought your life should be.

"Now and then it's good to pause in our pursuit of happiness and just be happy."
 ~ Guillaume Apollinaire

A French poet, writer and critic hit a chord with me in this quote. A similar quote is stop and smell the roses. Don't be so busy reaching your goals that you don't appreciate the journey. Half the trip is the memorable moments in between.

On adversity...

"Some changes look negative on the surface but you will soon realize that space is being created in your life for something new to emerge."
 ~ Eckhart Tolle

While not a Christian spiritual author, the New York Times dubbed him "the most popular spiritual author." He is indeed spiritual. I formed this conclusion after reading, The Power of Now and his subsequent books. His 'teachings' encompasses all religions. Having studied many different religions also, his writings hit a common chord with me.

My last quote comes from our 26th president.

"Do what you can, with what you have, where you are."

 ~ Theodore Roosevelt
In surviving a stroke, I'll admit to not being able to live my life as I once did. I took a detour along my perceived path of my life. Along this detour, I have found new ways to do what I want to do. I've met some truly wonderful folks that I might not have met otherwise. My ministry has changed from a professional career to a lay pastorialship to a flock of lost souls. These folks I may not have met otherwise. My life as a whole, albeit frustrating at times, is richer for this.

After all, what is life without a few bumps in the road? A life on a treadmill really going nowhere.

Nothing is impossible.