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.