Sunday, November 11, 2018

Sunday Stroke Survival: Dealing with Change

I've spent several blogs talking about adjusting to change recently. This is yet another one. I'm not sure why. Maybe, because I'm facing new changes (or soon will be) in my life again. This one by choice for my quality of life.

Has your world changed forever with one event? Living post stroke is like that (enter whatever life changing event that you are facing here).

Everyone resists change. Nobody likes change of their status quo. These are facts of life and yet we have to change. It's part of the cycle of life. We don't grow without change. We don't achieve anything without it. It's an upheaval of the norm and the norm equals comfort.

Some changes are good like getting an education, graduating, getting married, having children, getting your dream job, and other momentous occasions. Doors are opening to a new, exciting life. Other changes like divorce, deaths, losing your livelihood, or serious illness aren't so exciting of a prospect. Doors are closing and you have no choice but to adapt and change. The old ways are gone and you have to travel in a new unfamiliar path. These are the changes no one likes.

Let's face it. These types of changes are scary. The path is dark, gloomy, and there is no discernible light at the end of the tunnel. Having a stroke, dealing with the death of a loved one, or losing one's livelihood is like that. I know because I've experienced all of these in the past decade. Having a plan in place helps, but within these plans there are a microcosm of changes that happen, or things don't go as planned. Uncertainty, rattles you to the core. It's a very uncomfortable situation to be in.

"The secret of change is to focus all of your energy, not on fighting the old, but on building the new."
  ~ Socrates

So when I was facing a life of living post stroke, it took a short while to accept that this is what it is. I divided my time evenly between regain use through recovery and trying to do with disabilities or limitations. I strongly dislike would of/should of/ could of scenarios. I like a set of actions and variables if this/then that or that because rarely does anything go as planned, but after a stroke all bets are off. I've rebuilt my life on my new reality several times in my life. It's never fun. It's been a "Well I can't do that anymore. What do I want to be when I grow up this time?" It's my sort of fall back and punt position when life changes for me.

A short story to illustrate my point. I often feel like the poor rat in this story, but I don't die. I'm left with having to make changes to my reality.

Last evening, there was a small rat was caught by the nonpoisonous snake living under our washer the washer and dryer. He probably crawled in there a lot smaller and grew up. Now he's basically trapped under there unless we move everything and let him out. He's had a steady diet of wayward rats for over a year now. He's quite content living this way. He stays warm and fairly well fed between the rats in the disused furnace and the water heater closet.

But this night was different. The rat got away. He ran from the snake squeaking loud which alerted Herbie, the dog, our small rodent catcher. The rat raced from under the dryer straight into Herbie's jaws. A quick couple of chomps and the rat was dead.

Are you too deep in your situation that you go from bad to worse like this poor rat? For a few days after my stroke I was. It was just shell shock. I clawed my way out of it and started planning my life from here on out. I realized there would be major changes that had to be made. In a way, a certain loss of identity needed to be compensated for. But the areas that I cared strongly for was still in tact. I was still the loving wife of a dying spouse. I was still a mother to my grown children even though for a short time (6 months) I was dependent on them while I got my bearing in my new life. I was still the loving Grandma! That didn't change even though my hugs were one sided. They were just as full of love. Even though my aphasia wouldn't let me say the words, I could still listen to them. None of that changed with my stroke and I was fine. Everything else required work to regain it or change in directions.

An example. Spinning fiber into yarn and using the yarn to make various things has been a winter pastime for me for decades. I wanted it back. I spent many a frustrating hour attempting to do it one-handed. Eventually, two years later, I regained the ability. Some old way things are worth the effort. It's not easy as doing it two-handed and a lot slower and deliberate. It's not the mindless, relaxing activity as the old ways. Now, I have to have the right mind set, plan my actions, and focus to spin. But then, I realize I'm just going through the stages as I did when I first learned to spin. I'm hoping one day that spinning one-handed will be relaxing and mindless activity again. Until then, I'm content. A lot can be said for contentment when dealing with change.

In cooking, another love to do activity, I can pretty much do what I did before with the help of gadgets. It still irks me a bit to have to depend on them, but I'm getting the job done. After six years of fumbling attempts, I can do the basics now without conscious thought. I still can't frost a cake or do the intricate detail work as I once did, but when dealing with life altering changes beggars can't be choosers. I still prepare two meals a day here every day. I even can and preserve our food for a year.

This is my new T-shirt. Like it?
Life is never stagnant. It is constantly evolving whether we like it or not. It's time to put on our big girl panties and deal with it.

What was the old way becomes the new way until it becomes old again.

Nothing is impossible.

Sunday, November 4, 2018

Sunday Stroke Survival: Coming of Age-a Response to Barb Polan

Yes, I pulled it from your blog Barb!
I just read Barb Polan's blog about Coming of Age. It's a very well written, insightful blog post. I encourage y'all to read it. Post strokee or not. This is much longer than my comment to her. It's of a cord that I've often written about here. I'm thrilled I'm not the only one that sees my life post stroke this way.

I've often said when describing my life as the "new normal" which Barb calls bulls**t and cliche. But what else do you call it? It's accurately describes my life now. It's nowhere near what it was before. Adjusting to life after a stroke is hard. It's one of the most difficult things I've ever had to deal with and I've dealt with a lot and been here several times before. To use another cliche, it is what it is and I'm starting over again.

Which leads me to the another phrase I use quite often here, "What do I want to be when I grow up this time?" As I've said, I've been here many times before when life changing events happen.

Just out of college for the first time, I was a registered nurse with a Bachelors degree. I had always planned to be a medical doctor since I was eight or nine years old. Getting married, because I was "in love," straight after  high school graduation. Soon after children followed. I still wanted to be a doctor. But that was an impossible dream at that time in my life. So I had a plan. I step up to being a doctor gaining experience as I went nurse, nurse practitioner, physician's assistant, to medical doctor. This way I could earn a living too while I learned and took each step. No nurse would ever treat me the way we treated wet behind the ears, newly graduated doctors. I'd had been in the trenches and worked my way up.

Things change

An opportunity came up at work. They wanted to be a level 1 spinal trauma hospital. For this, they needed a life flight to ferry patients to them. All they required the applicants to have was a Bachelors degree in nursing, three years in Emergency medicine, and a paramedic license. They were so much of a pinch to find applicants that they threw in a bonus...fifteen years to retire with full pension at 65. I jumped at it. It was only a small detour of my life plan plus I'd gain even more experience. The only thing I lacked was a paramedic license. At the time, an RN just had to take an EMT (emergency medical technician) course and they could challenge the paramedic licensing boards. I did and the rest was history, sort of.

My #2 daughter was afflicted with Juvenile Rheumatoid Arthritis. Not much was published outside of medical journals about the subject. I wrote an article for my local support group newsletter. A mother's point of view thing. It was picked up by a nationally syndicated magazine. Then, I was approached by a publishing company, could I expand the article into a book. Oh, yes, I could! The book was published. I ended up giving the royalties to the Arthritis Foundation and eventually giving them the copyright. I didn't need the money and it was better spent with them. It wasn't my dream to be a writer or published author. But soon, publishers were asking for books on various subjects and I complied.  I still didn't dream of being a published author even though I was earning royalty checks. It was just something I could do in my spare time. The rest is history, sort of.

Things change 

 A call gone bad. I was shot and the helicopter crashed. My injuries were life altering. I had a badly damaged spine and a hip replacement at 26 years old. I had just had my 4th daughter a couple months before and I was facing never being able to walk again. I was six months in a wheelchair proving the doctors wrong. I loved it. I was another three years going from two arm canes, to standard cane, to none. I went back to nursing part time. But I developed arthritis in my spine. I had a choice. Keep working in nursing or find a new career. I was again recreating who I was when I grew up.

But being one to take the bull by the horns, I went back to college to learn a career that didn't require me standing. I chose education first because I could get my degree faster because I already had a Bachelors degree. It would take me six months. To hedge my bet, I also took computer programming courses and business courses. The dream of being a doctor faded as real life pressed in.

I still continued to write nonfiction and collaborations. I was passing time until a money making career developed. It was also a needed source of income. My "in love" status changed while in college. I realized my husband of 16 years was a louse. I knew that in the back recesses of my mind, but came to face reality when he said he refused to be married to a cripple. There were other factors too but my marriage ended.

 Things Change
My life dream died. By this time, I remarried my beloved, continues through to the Masters program in business and marketing. I was still searching for a career. The business careers were pretty lucrative. So I settled. I was still writing. My husband suggested I write about my younger life because everyone thought it was interesting. The hitch was that I had to write it as fiction. I still didn't think of myself as an author even though there were twenty books out there with my name on it. It was something I found challenging and an escape from the stresses of life. Then, I couldn't find an agent or publisher to publish my manuscript. It got put on the sidelines but I had caught the bug. Soon four manuscripts formed and the beginnings of a fifth. I became a hybrid author. Self publishing my fiction and traditionally publishing my nonfiction. I was recreating myself.

Another opportunity raised its head with the church. They needed lay pastors to help other pastors as well as my own in the southern district. Being faith filled, I knew a calling when I heard it. I did that for a couple of years and loved it. So I was back in college again. This time, it was a PhD I was after. I fought the Lord long and hard over this one. I hemmed hawed around on my dissertation. Drug my feet in defending it. And, reluctantly graduated.  It was another two years arguing with God before my ordination.

The things I enjoyed doing would never amount to enough money to live off of. In writing I got a paycheck every six months besides advances. Even as a hybrid author pay days were every three months. As a chef or chef instructor, the opportunity was met by serious competition that was younger and cheaper. As a lay pastor, it was mostly free of charge or a love offering. As a pastor who couldn't relocate, I was destined to be a traveling, fill-in pastor for $50 a service. I was actually doing pretty well doing all three together. I was earning money, but wouldn't get rich in it.

My true money earning career was as an international business and marketing consultant. That I didn't exactly hate, but the traveling became a problem. It was a living at a minimum of $65 a hour. Not that I wanted to be rich. I'd been there, done that, and paid heavily for it. I was recreating myself again.

Things change

My beloved illness status changed to terminal. Truth be told he was terminal after the first year of his illness after two heart attacks and a stroke. The next year we found the rare form of cancer that was causing it all. I sold my company to my partners. After ten years, I had grown my company from a home business to having three partners and staff. My buyout was a cool million that all went to help keeping my beloved alive.

I fell back into my loved to do things like ministry, writing, and teaching culinary arts. It was something I could do to bring in the extra money we needed with mounting medical bills and still mostly be home with him. I was recreating myself into what I wanted to be when I grew up.

Things change

I had a stroke. Being an overachiever, not one but two. My ischemic stroke escalated into a hemorrhagic stroke within a matter of days. I went from weakness to aphasic paralysis. I began fighting my way back. After the first stroke I began writing a book on a humorous take on stroke recovery.  Preliminary chapters were sent to publishers and a bidding war for the full nonfiction began.  In the midst of the war, I had another stroke. This one took my writing ability. Fighting my way back was nothing new for me. Been here, done that. I was recreating who I am yet again.

Things change

My beloved finally died after beating all the doctors' predictions of "any time now" by ten years. I had been in the role of caregiver for more years than I cared to remember from my mother to my husband and several other family member in between. I vowed that I wouldn't do it again. It was time for me. So what exactly was I suppose to be now when I grew up with a totally dysfunctional body and brain?

During the last twenty years of my husband's life, we had a mutual live an organic, self sustainable lifestyle. This life dream didn't depend on the world, but on us.We took baby steps towards our dream while living in the suburbs. We grew about 50% of our own food, researched alternative methods of power like solar energy, and ways to preserve food. We even took it a step further by buying a twenty-acre tract of land off the beaten path. We called the place Murphey's Madness Compound because we included our children and their families in our plans.

Things change

Living post stroke, our dream clashed with reality. My children all moved away to distant parts of the globe and were living their dreams or at least making a living. I could no longer do what we dreamed of physically or financially. I found myself chucking my life dream once again to move into an assisted living facility or senior living type dwelling. I refused but could not see an out of my situation. Mel to the rescue. Now the rest is history until things change again.

Life is about changing and adapting to those changes. You'll eventually find your path through the changes. It may not be the way you dreamed it would be, but just as satisfying. You might even go in a full circle, like you did, Barb, to get where you needed to be. God is good, all the time.

Nothing is impossible

Sunday, October 28, 2018

Sunday Stroke Survival:Quick Update

Not mine!Mine's not so pretty.
I had my cardiac stress test last week. This was the final hoop for me to jump through before my rhizotomy. I got my results on Thursday. Yes, I still have three out of four bad, leaky valves in my heart, and heart damage from my heart attack. But, nothing has escalated since my last stress test a year ago. Wohoo!

There was a lot of concern because I was still having angina. Sometimes, bad enough to take a hit of nitroglycerin. But not bad enough to have to take a second hit and go to the hospital. I know what a heart attack feels like. I'll go to the hospital when I need to. This hasn't changed in six years. But yet, the cardiologist wanted to do a heart cath to be sure. I talked him out of it. My ventricular fib is moderately under control with medication. In other words, I'm as healthy as I'm going to be right now. I may change my mind about the heart cath after my rhizotomy. Where I'm concerned, better safe than sorry. But I'm in my status quo and not being foolish.

My hypoglycemia, rather than my diabetes is a mute issue after six years, is a concern but easily fixed with a glucose drip piggy backed to my regular normal saline drip during surgery. Just as high blood sugar presents complications for surgery and recovery, low blood sugar is equally as dangerous. The slightest stress will drop my blood levels dangerously low. Like when I had my first stroke, my blood sugar level was 40. Even though I'd taken my morning dose of insulin, it should have dropped that low. Eating a high carb dinner (pizza with a 16 oz glass of orange juice) barely raised my blood sugar level to normal. By my normal standards, the orange juice alone should have brought my blood sugar to high normal, but it didn't.

This is what my rhythm is like
My ventricular fib also raises my risk factors during surgery. My last major surgery was the removal of five tumors from my abdomen and a total hysterectomy. The whole procedure should have lasted an hour tops, but my heart had other ideas. It fibrillated and stopped twice. Three hours later, my frazzled surgeon told me the tale. I was in the intensive care unit instead of the regular post surgical unit. But still, I'm gladly going ahead with this surgery. A little wary, but that desperate to be out of pain.

What really concerns me is being off my blood thinner. My stroke risk increases 70% of having another stroke. This time I may not be as lucky as the previous six. The stroke could happen any where in my brain. Not that it couldn't have done this already.

If I had another stroke in my right hemisphere of my brain or brain stem, I'd really be in trouble. I'd lose function in both sides of my body instead of just one.

If I have had stroke while currently on blood thinners how greatly does that standard 70% risk increase by being totally off the blood thinner? That's a scary proposition. It's even scarier than the possibility of death. I talked at length with my cardiologist about this but he isn't overly concerned. Considering the clots are forming in my heart and going to my brain, I thought he'd be the one with the most concern. Maybe, my neurologist is the better person to talk to.

I'm not borrowing trouble. I'm just trying to be prepared. Is there such a thing as preparing for a stroke? I know that F.A.S.T. doesn't work for me. By the time facial droop is evident hours have passed. My blood pressure isn't a good indicator either. The same goes for the arm and speech. So the T for time is skewed. So much for being the Queen of Abby Normal.

Well, that's my update.
Nothing is impossible.

Sunday, October 21, 2018

Sunday Stroke Survival: Durable Power of Attorney for Health Care

Do you have a designated person for Power of Attorney for Health Care? You should. I'll tell you why this is important. Who to choose as ideal candidate? I'll give you a few pointers that I used in choosing mine and why I ruled out certain people in my life.

Now a Durable Power of Attorney for Health Care (DPOAHC), although the person selected can do both, it is different than a General Power of Attorney which mainly deals with financial matters and property. This concerns decisions about how you are taken care of if you are unable to make the decisions yourself due to mental status, illness, or near death situations. Without someone to speak to medical personnel are legally obligated to do the best in their power to keep you alive. Many court cases have been filed to end a life long after all hopes of a quality of life is extinguished. Even the state or country has a say in keeping you alive without a DPOAHC.

To date, I have been the DPOAHC for five people. It isn't an easy thing to do when it's your loved one and easier to do the more distant they are from you. I am level headed in all situations. I can look at the whole picture given the facts, and can put another person's desire above my own.

Who to choose...

When you are married. Most likely this is your choice for a DPOAHC. Some reasons you might not want your spouse to decide. If you can't trust your spouse to follow through with your desires. Their emotional state is in question. Going against your desire to keep you alive and with them overrides your wishes to pull the plug so to speak.

A prime example, I was my mother's DPOAHC. When her time was neared, she went into severe respiratory distress at her doctor's office. She was transported to the ER. I made sure they had a copy of her DNR and my DPOAHC long before she reached this point. It didn't hurt that they had previously worked with all of them also. In the ER, my father, with tears in his eyes, begged me to let them do something. The ER staff looked to me for directions not my father. I shook my head no. She didn't want that. I held firm. Care and comfort only. I'd seen the x-ray of her chest done before I arrived. She had quarter sized pieces of lung tissue not affected by her cancer. Oxygen and an IV was all I would allow knowing it would be only a day or two at best that she would live. But, still my father begged me to let them do more. It's all she wanted. My father, even though he was her spouse, would not have been a good DPOAHC for her.

Keep in mind that inmost states in the US, the husband has this decision to make for you unless you designate someone else. Even if you are estranged, separated, or divorced. The same goes for your next of kin in case your spouse is deceased. While I'm thinking about it, who is your emergency contact in your wallet? Insurance policy(auto, home, bank, medical, life)? This may be the person contacted if immediate decisions are needed.

You should check and/or change this periodically. I recently did this after my husband died. I even found some spots where I listed my father as an emergency contact. My father is imfirmed and suffers from rapid onset Alzheimer. There's no way he could make any decisions for me.

You sure don't want an enemy to make these decisions for you. Don't have any trusted friends or family? Choose your attorney. If your attorney goes out of business or retires, hire a new one pronto.

When choosing mine, I had a few choices. I weighed the pros and cons of each closest family members. I mean I've known them in good times and in bad all theirs or my life, right? I also have a very large pool to pick from (4 generations) It was a good place to start. I decided on two. You can have more than one. If one isn't available, the other can step in. My choices are my one of my adopted sisters and my #2 daughter.

The reasons for my choice are many, but most important is both understand and will do want I want. Both are medically trained and have Hospice experience. They have the ability to step outside the  situation (family) and make logical choices. They weigh options and outcomes. It doesn't matter if we are at odds, they will still abide by my wishes no matter what.

The fact of the matter is, right now, I have the time and energy to devote to this decision. Now, is the best time to make this decision without pressure. I can think logically and sort through the pros and cons of candidates. Nobody likes planning for their own death. I'm really not planning it by doing this now. I'm choosing my quality of life. I've got the time to hash out exactly how I want to continue living.

Even though my DPOAHC know my wishes, it is also spelled out on the legally binding form that was witnessed and notarized. I actually  had four copies notarized: one for each DPOAHC designee and two for me. One of the copies I carry with me always, and the other sits in a file folder with all my important papers. I want to make sure my wishes are known.

Have back-ups to your back-ups.

Depending on your state, you can define how you exit this earth. You've got some decisions to make also. A Do Not Resuscitate (DNR) means no CPR. Whether or not you want fluids and/or nutrition is another consideration. Whether you want mechanical life support or what is known as care and comfort only. If placed on a ventilator under what conditions should it be turned off? All these are  decisions that need to be addressed in your DPOAHC document and discussed at length with your designee(s). Georgia is not a right to die state. This is the closest I can come to it legally.

Hopefully, you will never need this document, but if you do...better to take the time to do it now. But living post stroke with aphasia. it just makes sense. Plus, I'm looking at hours under the knife in the near future. If I hadn't made these decisions years ago, I'd make it now.

Nothing is impossible.

Sunday, October 14, 2018

Sunday Stroke Survival: Coping with Emergencies and Hindsight

In the aftermath of the medical emergency at the Big Red Apple Festival a couple of weeks ago, I've been evaluating and searching for alternatives. Hindsight is always 20/20, but by looking back and looking at alternatives to any situation makes you better prepared for the next time it happens or something similar happens.

With the hindsight bias, you can look at the situation clearly in calmer times.  You can play devil's advocate and what if games til the cows come home. What could I have done differently in this particular situation? Absolutely nothing. I did the right thing.

Yes, I could have jump in when I realized the woman was seizing. We would have both ended up on
the ground. I could have been injured too making two patients rather than one. I could have jumped in, both fallen, but it could have saved the woman from the gashing head wound...possibly. I chose the best choice in milliseconds. I'm kind of proud of myself that I still have this ability. I chose to get the attention of someone who could act and help. Pat yourself on the back, Jo. Ya done good. You deserve it.

What could I have done differently to circumvent my aphasia. In reality...nothing. My adrenaline was already coursing through my veins when I realized this woman was seizing. I knew she would fall and my body would not/could not respond, thereby causing added stress. Anyone with aphasia will tell you that stress is the enemy in outward communication. The stress could be simply tired from too much input into the brain, or in this case, an emergency situation. I still tried to make sure everything was done right, even though my words (and body) failed me. I knew what was the best way even though I couldn't express it.

My choice left me with feelings of helplessness, frustration, and anger because of my stroke. This was to be expected. The reality of what I really can't do anymore struck me in the face like a physical blow.  Not too many situations do that to me after living six years post first stroke. I live a very controlled life. I may run across a few things I can't do yet, but with time, I figure out a way around my inadequacies or impairments. In an emergency situation, time is a luxury you don't have.

So the luxury of  hindsight bias becomes a learning tool. To prepare me for the next time it happens. Honestly, there may never be a next time, but I always remember my mamma's sage advice, "There will always be an again." It may not be exactly like the last time, but there always is an again. So being prepared, I may not be so overwhelmed by these feelings so harshly the next time. I have the luxury of time to analyze the situation from afar. I can look at all the pieces of the puzzle and put them together properly and prepare. This cannot be stressed enough. It's also comforting. I can give myself a pat on the back. This too is important aspect of self esteem. It's too easy to hammer your self worth into the ground after surviving a stroke. Been there. Done that. Still doing that.

I realized in hindsight of the given event, I did exactly the right thing. Have I said it too often? I'm hammering in the self worth.  It conquers my feelings of frustration, helplessness, and anger I was feeling. See how it works? I'm no longer kicking myself for doing nothing. I was mentally supervising the woman's care even though I wasn't physically in action doing it. It was all I was capable of doing. It could have just making lemonade out of the lemons the stroke took from me, but I'm also coping. Sure, I'd have rather be doing it, wouldn't everyone? This was an emergency and I would be in the way hampering rescue efforts.

So now, I'm mentally playing the what if game. What if something like this happened to Mel on our homestead and it was just me there. Days can go by before we see another soul. Cats, dogs, rabbits, and chickens can do nothing to help. What would/could I do? How can I be prepared?

Well for starters, I will do whatever is necessary. That goes without saying. But, there are other things I can resolve to do. I'll begin to carry my cell phone in my pocket all the time. That way I can reach out and call for help. Sounds simply, right? When working in the garden or orchard, it's not always convenient to have that bulky thing in the pocket, but I'll make the sacrifice. I'll just have to make it a habit. Hopefully, we won't be in a "no service" part of the property.

I'll stick a bandana or handkerchief in my back pocket. It may not be large enough, as in the case of the woman, but it's better than nothing. I usually carry a hand towel in my basket or cinch it to my gardening belt. It's sweaty work in the Georgia sun too.

Two little things to make a habit of to prepare for medical emergencies here. Yes there are probably more things I can add, but I'm trying to address the ABCs of first aid (airway, breathing, circulation). For me, It's airway, bleeding, and calling for help. While I can perform CPR one handed, I'd rather not or as little as necessary, so calling for help is essential. And, depending on where I'm at, I may not be able to get myself up.

It's the little things like these two changes can mean the most in an emergency situation.  Hindsight is a very useful tool used this way.  By taking the time to figure out what to do in a given situation gives me an action plan. That is power and control.

Nothing is impossible.