Wednesday, October 7, 2015

And Some Days, It Does Not Pay to Get Out of Bed

For every other Saturday, my children and I have been cleaning and going through stuff here.  This has been going on for over a month now. The personality conflicts and head butts have driven me nuts. But they are my children and grandchildren. They are trying to help old mom. But some days,  it doesn't pay to get out of bed.

There's a lot of stress involved on my part. I'm dealing with grief. I'm deciding what to pitch. What to donate. What to keep. What to yard sale. And, who wants what. Some of these are trips down memory lane that send me through the time machine twenty, thirty and forty years ago before I can decide. Other decisions are simple- if I haven't seen or worn it in five years- it goes. Some things I have to juggle back and forth between keep, sell, and pitch.

It didn't come as any big surprise that my oldest daughter could be difficult when asked to do something she deemed unimportant like cleaning my bathroom. I can't clean my tub. I won't say can't, but more like it would cause me too much hardship and pain to do it. It takes kneeling, or bending over in my tub to do it in an upside down fashion. Tubs get mighty slippery when using water and cleansers. Last time I tried, I pulled down the shower curtain on my head to avoid falling. I raised a nice goose egg on my forehead for my effort. I had to asked my oldest grandson to put the curtain back up. God love him. He's so special that he hung it back in place backwards. The pretty side (not waterproof) was on the inside. Anyhow, my daughter thought it was a menial task that wasn't as exciting as breaking down the spare bedroom so she took FIVE HOURS to clean it. It really took an hour, but all the complaining and griping filled the rest of the time. She does much better when it's just her and me. But this time her younger sisters were here too.

So I also had three of my grandchildren here. I thought one of the two that were not cutting the grass would help me empty my lower kitchen cabinets. Once again, getting into these takes squatting, sitting on the floor, or basically standing on my head to get anything out of them. I haven't opened them in over three years. I had gone out and gotten boxes just for this occasion. That didn't happen. My granddaughter and my #3 grandson saw a spider and that's all it took. They refused to even walk into my kitchen again. They comforted themselves by texting and FaceBooking themselves for the duration.

My #2 and #3 daughters tried to help me in the kitchen. But that pulled them away from what they were doing...breaking down the bedroom set in the spare bedroom. My #2 daughter mentioned the last time she cleaned my kitchen and how she was disappointed that I had let it get in such a state again. That was my limit for frustration. I told them both to go back to what they were doing.

Yes, the kitchen was messy and I knew it. The last time one of my children had even done anything to my kitchen was THREE YEARS AGO! I hadn't been doing anything in my kitchen except to cook meals, wash dishes I'd use, wipe down the counters, etc. I was only caring for my husband and doing everything I could do for a year and a half. Nah, that was nothing at all. I was sitting on my butt waiting for someone else to do it. Maybe my husband could have done what I couldn't. Yeah, right!

About that time, my #3 grandson came running into the kitchen, "Grandma, Grandma! Your water heater is leaking and your whole garage is flooded!" I sent my son-in-law out to check it out. Just what I needed, I thought. All those boxes in the garage are now soaked. It turned out not to be my water heater but a backed up drain to my washer machine, but I didn't know that at the time.

I went into my office and tears of frustration began welling up as I plopped into my chair. It really irritates me that I cry when I get over frustrated and mad because I really should yell and scream. It was frustration because of the limits my strokes have imposed on me. If I hadn't had my stroke I could do all of this myself. If I hadn't had my stroke I wouldn't be exhausted all the time. If my husband had not have gotten sick and died, I'd be happy wherever we were. If, if, if instead of the reality I'm faced with. Anything is better than reality when I get like this. Calgon take me away! Wait, my oldest is still cleaning my bathroom. So I sat at my desk reaching for tissues. Eventually they all went off to their respective homes. I was left walking around empty boxes that I had hoped to fill. My house is a minefield of fall hazards now. But I'll continue on one day at a time.

Finally, the spare bedroom is almost empty. This will be the staging area for the yard sale. I've got an air cycle, my NordicTrack, my neck traction device that was used twice before my husband couldn't help me any more and some really great items in there already.

I'm paying my youngest daughter's way home. Gas and miscellaneous expenses from Texas for her to help me full-time. Her husband is still waiting for his transfer to Alabama to come through. Ya gotta loved the Army. She'll be bringing my two youngest grandsons with her. She's already arranged for child care while she helps me. She's a whirlwind when she gets started. Her ADD/OCD behavior defaults from her traumatic brain injury works in her favor with tasks like this. Besides I win all the way around because I get to see her and my youngest grandchildren. Even though they were just here for my husband's death and funeral, we didn't spend much time together (not in the way we wanted to).

So soon all of this will be over. I'll be able to close on my property in November liked I'd planned. I feel like I've been standing still with a two-thousand square ft house sitting on my shoulders. But after this I'll be moving forward again. Worst comes to worst I'll buy a small RV and live in it until my house is finished so I can put this house on the market. It shouldn't take the painters and carpet people to do their jobs. The house down the street sold last week after being on the market a month. This is a very desirable neighborhood.

I've had some static from my older grandchildren about selling this house. It's the only place they've known as grandma and grandpa's place. I understand. I really do, but things change. Life is not stagnant. I've got to do what is best for me. They are mid to older teenagers now. One day when they have lived more of their lives, they will understand too. Whatever income I have left will have to see me through the rest of my life be it five years or thirty. All their dreams of coming back to live in this house may change too in twenty years. There are no guarantees. Do today what you can because you may not have a tomorrow. Take enjoyment and hug it close.

Don't get me wrong. I'm thankful for my children and grandchildren so I don't have to do this by myself. But sometimes, I'd rather stay in bed than deal with any of them.

Sunday, October 4, 2015

Sunday Stroke Survival: Power Naps

I used to take power naps like Einstein. I rarely slept more than four hours a night unless I was sick or drugged and I did it for thirty years!! During the day, I'd close my eyes and instantly fall into a dreamless sleep for twenty minutes and awake totally refreshed ready to take on the world again. I would burn the midnight oil often until 3 or 4 in the morning and get up for work the next morning. And then, repeat the process as I wrote and held down TWO full time jobs for decades. These are the classic power naps.

Since my stroke, that life is a distant memory. Mainly the chronic fatigue I feel. I now sleep six to eight hours a night when my body allows it. Spasticity has a weird sense of timing. The pain can cause even a heavy a sleeper to awaken in pain. I need those six hours at a minimum to feel rested. But just getting out of bed is a tiring struggle and it's just the beginning. How I managed all those months of waking every two to four hours to give my husband his morphine had to be God's grace upon me that I could still function. I depend on a two hour nap during the day to make it to bedtime. It was explained to me that I was burning through my energy in the recovery process and spasticity. What it amounted to was for every action I accomplish during the first four to six hours after rising used every ounce of energy I accumulated during the night's rest.

Now I literally pass out/doze off in exhaustion. I'll be sitting at the keyboard ignoring all the warning signs of my energy level reaching empty, and suddenly wake up a couple of hours later. It doesn't matter if I'm lying down or not, I'll nod off. Needless to say I work my driving times or running around times in the first four hours or after nap time. So my day can start at 5AM and can continue up to 10AM at the latest. It will be after 2PM before I can function outside the house in the public again.

These aren't power naps any more, or are they? Sort of. There's no definitive answers after a stroke. It's always, it depends. Before my stroke, my gas tank was filled full after a twenty minute nap. But now, I'm running half empty upon awakening after two hours of napping. I'm good until probably 6PM. Then I'll doze off in half a hour  for every two that I'm awake increments until I get my behind up and crawl into bed at 10. I have to stay awake until 10 because of my night medicines.

As much as I hate to admit it, part of this new energy cycle cannot totally be blamed totally on my stroke and an abundance of muscle relaxers, but age.  A few years ago I wrote a blog post about 60 being the new 2 because that's how I felt like my life was like post stroke. I still do! I often say, "I'm not a Spring chicken anymore or even a Fall hen." I also say, "I'm a tough old bird." All of these are true. If I was a chicken, I'm so old that even pressure cooking me for the maximum amount of time...I'd still be tough to chew (think-shoe leather). The fact is, I'm slowing down because my body is older. But I can still run circles around some of you! (wicked grin) You know who you are.

So now if I have to, I equate power naps as energy naps. I can't do without them. They are a MUST DO. Where as before I might skip them, now it's an everyday necessity just to get through a day. Even the little doze off periods in the evening are a fact of my daily life. Just like most, I have a honey-do list except I'm the honey that must do. If I don't go to the grocery store, I'm scrounging for something to eat. If I don't service my car, it'll stop running.

 My scheduling has been thrown out of whack with road trips and house down-sizing marathons on weekends with my children. But I'm coping with extra naps/doze off periods when they are taking items to Goodwill and Faithworks. Even if I just take a supervisory role, it's mentally taxing.  Sometimes that's worst than hard physical labor. Just separating 17 years of living in this house/40+ years worth of things into donate, sell, and I want rooms of the house means multiple trips down memory lane. This makes everything take twice as long to accomplish. Partly it helps and hurts my grief at the same time, but I realize no matter what I do, it will be this way. Yes, I did say rooms! Since I basically only use three (four if you count one bathroom) rooms of my house out of ten, there's space. I can't believe I had three Christmas trees in my attic!

Big furniture is going out of the door on each session which frees up more space, but I've filled them with bunny cages (grin). They have a room all to themselves now. But as much as I enjoy my animals, they too take a toll on my energy levels. But I have to say, it's taken SIX rabbits to equal the amount of care for energy expenditure that my husband took on a daily basis. The rabbits are part of my healing process. I give them love and get love in return from them. I'm relishing the fact that all this STUFF is leaving my life. Down-sizing has been a catharsis for me even though it is exhausting. So many things on my plate has been tiring also, but soon it will be over with. I figure by November or December tops, it will be done except trying to sell everything. If I thought this house 2,000 sq ft house was too big for me when it was full, it will seem cavernous when emptied. Then I'll know it will be time to move on.

In the mean time, power naps will be my saving grace to get me to the end of each day.

Nothing is impossible.

Wednesday, September 30, 2015

I Hear What You're Saying...

I got a new T-shirt. You know me. I wear what I feel.

This one says, "I hear what you're saying. I just don't care."

Yeah, it's been that kind of week for me. All week long I've been  snowed under with unsolicited advice.
You ought to do this or that.
Maybe you ought to think about it more carefully.
Let me do that for you.
You really shouldn't be doing that. 
To repeat just a few. It's not that I don't care, but if I actually followed what they says, I wouldn't have made the gains I've made over the past three years. It's not that I don't appreciate the concern, but don't block my way. If I don't try, how will I know what I can do or cannot do.

Yeah, sometimes I may bite off more than I can chew. Like purchasing five angora rabbits of varying ages in two months time. The grooming of these rabbits take time and energy. If timing had been better, I really would have liked the purchase spread over four or five months time, but when the rabbit you are looking for comes available you have to jump on it. Not that I hadn't planned on a six- hole rabbitry, I did. But there is something to be said for having the time to get to know each rabbit. To train them properly and building trust takes time.

But all that being said, I do have the rabbits I wanted. Granted the fast purchase wasn't without some added expense like the cages and where to put them. On the homestead they would have been in the barn rather than a bedroom, but it works. I had planned on putting new carpeting in the house anyhow. I won't be breeding them until Fall when it's cooler. It will also coincide with the females blowing (shedding) their coat  before they give birth. Angoras can handle cold better than heat. Isn't that true for most of us? Seeing how they are indoor animals than outdoor animals gives them more of an edge.

Yes, it is taking time to get to know them all while not creating jealousy among the first rabbits. It's a juggle like raising children.

Dubu is my self black German/French angora. He's such a handsome boy but very jumpy and a bit skiddish. It will take some added care to bring out a calmer rabbit that I'm sure is in him. At four months old, he is the same size as my two-year olds (Buddy and Clover) and he's still growing. He still sticks his long tongue out.

Clover is my brown and black tort. She is still stand offish but a total joy to cuddle. I could even hold her upside down and she trusts me not to drop her. She is destined to be Dubu's mate. They should breed gorgeous babies with fabulous wool.

Snowball, my BEW (blue eyed white) at five weeks old, is showing signs of being a great wooler and is destined to be Buddy's mate. With both of them having the Vienna gene (BEW characteristic), they have a greater percentage of producing more BEW offspring. Characteristically, she's a cuddler. She loves being handled like Buddy. They will be the backbone of my BEW rabbitry. Right now she's so tiny that snuggling with her is no problwm at all.

Kieran, at 3 months old, is the adventuresome trouble maker of the two brothers. This brown French angora is curious and bold. He's not afraid of much except Lil Bit, the cat. But even so, he will stand on his hind haunches to stare and twitches his nose at her until she comes close, and then he scampers away. Not that Lil Bit would hurt any of Momma's babies.

Colm, the grey French angora, is by far the most mellow bunny I've ever seen. He's a lover not a fighter, but if this trend continues will depend on how puberty affects him. He'll lay quietly on your lap and snuggle in for a nap. So long as he has his brother Kieran is in sight he feels safe. Separating them into side by side cages should alleviate and separation anxiety of the two brothers. At least that's what I'm hoping.

And lastly, Buddy will always be my favorite. My first angora mixed bunny. Loving to a fault and is constantly asking for kisses and ear rubs. Obedient, most of the time, getting in and out of the cage on command. Will search me out if he doesn't hear or see me. My #1 rabbit.

Yes, I could have been more cautious and waited for different rabbits, but I'm happy with the ones I have. I could have waited until all the cages were built and my new homestead before buying them. I could have done a lot of things, but didn't.

My homestead plans are still in motion. Many think I'm foolish, but I see it as a step in the right
direction. More land needs upkeep, but with the plans including a barn, outdoor cook house, and fenced pastures for managed grazing for goats and sheep, if I am careful in the long run, it will sustain itself and me for the rest of my life. Yes, it would have been easier to do if I had not had my stroke and if my husband was still alive and healthy. But nothing worth having is ever easy.

The off-the-grid home makes dollars and cents. Having a tiny house makes perfect sense to and for me. Who really needs all the stuff? More to dust. More to clean. More labor intensive. I've never been a happy homemaker. I love to cook, but how much can one person eat? I'd rather be tending to the animals and garden. Puttering around is what I do best especially with the short attention span I have since my stroke. A little bit of this and a little bit of that. I'll be kept busy, that's for sure but that's when I excel. It will all get done.

In searching for an easier way to wash wool that would be easier on me, a fellow Golden Isles Fiber Artist suggested the ancient method of fermented suint. The dirty wool is soaked in water for a week. Manure, dirt, and the natural lanolin in the wool form a soapy mixture which cleans the wool over time. All that is needed is maybe one washing and rinsing to have cleaned wool. Yes, it stinks to high heaven until it dries but it sure beats temperature variations felting the wool and making it unusable for spinning. When dealing with a whole fleece, that's a whole lot of washing the standard way of 3 or 4 washes each pound.

So for this week, I'm taking the attitude of I hear what you're saying. I just don't care.
That's it for this Wednesday.

Sunday, September 27, 2015

Sunday Stroke Survival: Botox Again and the Benefit of a Teamwork Approach

Had my usual round of Botox injections last week. Still at 400CCs of the poison for my spasticity. My hopes of doing away with them entirely with dry needling is still a distant hope. There's just too much high tone in the muscles to do without it totally yet.

In talking with most of the stroke survivors I know, they complain that their neurologists or therapists are useless. Offering little or no help at all. I'm happy to say that I cannot relate to this.

 Part is due to, I believe, is God's blessing and part in my attitude of looking at care/recovery providers as employees. If you have a medical provider that is not on the same page as you are in your recovery, why are you paying them. Yes, even if you are on Medicare or State Assistance, you are still paying them with your tax dollars. Now if you are in a small town, you may not have a choice, but where I am there are four or five of each specialty to choose from. Even if there only two, there is the lesser of two evils in a choice. Keep searching for a health care provider who thinks that it is possible to recover. That's what you really want, isn't it? I know I do.

I've often sung the praises of my neurology and therapy teams here on this blog. They believe like I do that nothing is impossible. They show they care about me and listen to what I have to say. This is important. It's called teamwork. Everyone is on the same page to get Jo to recover as much as possible. So what if my brain is telling the muscles to move in the wrong way. How do we fix it? How do we make it behave like it should? What can each one of us do to have a successful outcome? When I'm with my doctors or therapists (in this case) THIS is what we are talking about. When one of us hears something new, we bounce possibilities around. This is what I expect from my health care team and will accept nothing less, and why should I? Get on the same page or get out. Isn't this the way it should be?

This time around we had a change up. I asked both my therapist and my neurologist if the other could be present at my Botox session. Even though doctors get reports on their patients in therapy, it's not always the same as seeing it. My doctor was curious about dry needling because she hadn't heard of it before I started talking to her about it the beginning of this year. My therapist had never seen EMG driven needles for Botox before. So both were curious.

Shameless plug
My therapist is also supposed to make marketing calls on doctors to boost referrals for his company also. I understand the marketing aspects companies can demand and have often discussed this with my therapists not to mention achievable goals or progress for patients for insurance companies to keep patients on the roster. It pays to think outside the box when dealing with paperwork. It can cause them to pull most caregivers' hair out.

For me, being able to hold and carry things with my affected arm is a positive achieved goal, even though it is still not voluntarily mobile. For me, it's a huge achievement. To have limited control to do that is a giant leap forward and I can do it at will now almost all the time.

So my therapist marked the time of my appointment as a marketing call, but I benefited from it greatly. My therapist was able to discuss what he was doing with me and goals that he'd like to work on in the coming months. My doctor bounced ideas off him in order to hit the right spots with the Botox to make it possible.

While previously the main concentration of spasticity in my arm was in my upper bicep and pectoral muscles, the dynamics have changed with the dry needling. It is now the lower bicep and forearm that is the most spastic. The upper bicep and pectoral muscles have shut down in spastic movement. So guess where most of the injections took place. You got it.

Now, I know I'm extremely fortunate to get the meeting of the minds for my benefit. It all comes from the approach and being able to look at a problem from outside the normal. I make a point of surrounding myself with the outside-the-box thinking folks. Not so far out of left field to be truly strange, just a little avant garde. So who won? All of us. The neurologist learned first hand how to help her patients. The therapist was able to get a new referral source and learned more about patients having Botox. And lastly me, everyone is on the same page as far as goals and procedures for my benefit. It's a team effort.

If your doctor or other medical personnel are not working for you, find ways to work in your benefit. If you can't, replace them. Don't you deserve the best possible outcome? Can I get a "HELL Yeah!"? It may not happen overnight. For me, it took six months worth of schedule juggling to make it happen. But I think it was worth it. All you have to do is ask.

Nothing is impossible.

Wednesday, September 23, 2015

World View: My Rose Colored Glasses

I've been accused of looking at the world through rose colored glasses. Often, it's a derogatory statement from those who do not understand me. If that's what it called to be an optimist instead of a pessimist. I'm guilty as charged.

But that's not saying I'm naive to what's going on around me. It's just a choice I make. I have the know how to look at the big picture and the microscopic when dealing with this world and what it dishes out. I can talk the negative side all day long about heart ache and strife I've been through and am going through. I've been through a lot of SHTF (S**t Hits The Fan) situations in my life. When most people hear even part of my history, they shake their head in wonder that I'm not bitter and miserable. I tend to be prepared for the worst and hope for the best in most things. I've learned to adapt.

Quite often the rose colored glasses get broken. They refuse to let me see things as rosy. These moments I call being on the pity pot, as in self pity. Honestly, who could blame me for staying there? But that's not how I choose to live. It's no fun being there and living like that. Fear, pain, misery, and self doubt are all pitfalls to a happy, productive life.

Sure, I have a heart that's slowly dying and had strokes, but it could be worse. That brings me to my current dilemma. Mind you, I'm not on the pity pot. I'm just telling it like it is.

This week I received an ADL Questionnaire for Social Security Disability AGAIN. I need my rose colored glasses off for this and it's depressing. I can't write it out on the form for two reasons: I can't write legibly and there isn't enough room on two or three lines to explain. It would take pages to explain how limiting my heart is, what the strokes took from me and the fatigue, and how much the pain of my fibromyalgia and spasticity limits me. It would be a book by the time I finished if I include everything. But from what I understand, that's what is needed to qualify for disability. I had someone in an aid referral position tell me to dumb myself down. But I'm honest and there's the trouble. As I see it, I have two choices with filling out these forms: 1) Wait for one of my children, or 2) Type and print it out. I'm leaning towards the latter because my kids don't need to read all of this. It would shock them too bad. How much is too much information? All of this because I'm two years too young for Social Security and my pension!

I am able to do a lot mainly because I'm too pig headed to give up. Take bathing, a pre-stroke  shower took fifteen minutes.  Actually, I was able to shower, put my make-up on, and dress in fifteen minutes before my stroke. Now it takes me forty-five minutes, but I do it. I don't want to smell to high heaven or get some skin disease from uncleanliness. It's forty-five minutes getting into the shower, washing, and getting out. It's another twenty minutes to put clothes on because the exertion races my heart and I have to slow it down to stop the chest pains. If my right arm needs to be scrubbed, I have to ask my children to do it when they come over.

In cooking a supposed 30-minute meal takes me two hours to do, but I do it. I mean I got to eat, don't I? Most times, it's easier to go out and get it. I still have got three pounds of chicken breasts in my freezer that I bought before my husband died. I've got a pantry full of food but even using the can opener or boiling a pot of water is too much trouble when peanut butter or cheese slapped between two slices of bread is all the energy I can muster. That's with a night's sleep and a nap.

How bad is the fatigue and pain? A prime example even if yucky...I went to the bathroom a few days ago, and was too exhausted to reach around and wipe my butt. I even dozed off on the commode for a brief couple of seconds. And, my leg was so spastic that even rising to get off  was a feat done with gritted teeth. I was begging and pleading for the spasm to let up a little bit so I wouldn't fall. Still waiting for the Botox to kick in. I sure don't want raccoon eyes again.

This month, actually two months now, I've been going through mountains of papers in my effort to minimize what I have. I had nice neat little growing piles on my 11 !/2 ft desk. Up bounds the cat. She skids seeing the stacks but couldn't stop. Papers everywhere on the desk, the floor, and I even found a few where they flew into the closet. I bent over and picked them all up and stacked them again. This was after I had a screaming meme fit at the cat. So two hours later, I sink into my chair with my back yelling at me for the effort. The other cat comes in and does the same thing! UGH! The papers are still scattered after two days. I have a paper littered carpet.

Sure I keep rabbits and garden, but it's way different than what it should be. Just the snap, crackle, and pop factor of older stressed bones and muscles makes me want to stay in bed most mornings, if my bed wasn't painful to be in. I replaced my husband with animals. That was my choice or I wouldn't bother to get out of bed every morning. Caring for others keeps me going. Sure, I could have gotten a goldfish, but I know what motivates me. A goldfish wouldn't do not after being my husband's caregiver..

How do you explain all of this to anybody else???? This is some examples of my daily life activities and how it's been affected by my medical conditions. I'll take my rose colored glasses view of the world any day. Do you blame me? It's not because I don't realize what is going on in the world. Believe me, I know. But it's so much nicer with a rosy, positive outlook.