Thursday, December 18, 2014

Thursday's Tumbles and Stumbles

Well after a week of numerous tests and 'ologisitis to find what was going on with me, I finally have the results. It's gonna be filed under "Murphy's Law" or "It could only happen to you."

It's not what I thought, but I was partially right in that I blamed my Botox, but it turned out to be a list of things going on at the same time.

Macrobid has a side effect of muscle spasms. I was on it for my urinary track infection. The Macrobid side effect was fighting the Botox and I got caught in the middle. Thus the increased spasticity. I can no longer take Macrobid so that leaves sulfur drugs. The neurologist increased my Zanaflex to try and get control of the spasms. It has worked although my heart rate has dropped into the high 50s and low 60s which my cardiologist is wary of.

I was also going through a Fibromyalia flare. This was confirmed by the rheumatologist which accounts for the spike in pain level. He added Lyrica to my Cymbalta to combat this.

The total loss of urinary countenance was caused by a failure of my bladder sling. It failed by ripping loose from the right pelvic ligament it was attached to. This was confirmed by  my urologist. The ligament will heal on it's own. It is a minor tear, but will cause the hip to be "a tad" (his words not mine) more painful. The failure was most likely brought on by the urinary track infection putting too much strain on it because I've had so many in the past six years.

I'm left with a couple of options regarding the urinary incontinence 1) go back into diapers full time (expensive!), 2) catheter (least favored by all), and 3) having another sling installed (the best option).  With the best option, my beloved will have to go into respite care at the nursing home for a couple of days while I'm in the hospital. My urologist told me with my complicated medical history, I would have to be admitted.

 My hubby will hate it. Heck, even I hate the idea. He has become so dependent on me, I can see his stress level mounting off the charts with this. I may wait until after Christmas for this surgery. I'll need the time to lay in some quick fix groceries and chocolate for him. Everything is better with chocolate, right? I'm banking on a huge sale of after Christmas chocolates to carry him over to Valentine's Day. It's crazy to live your life around after the holiday candy sales because after Mother's Day there isn't another candy holiday until Halloween but we do what we can do.

Okay, I think that brings y'all up to speed with me. The hubby has a touch of Bronchitis, so I'll be watching him closer in case he goes into pneumonia. Me? Worried? Nah! Been here too many times before.

Tuesday, December 16, 2014

Redefining Disability Project~ Post #9

It's Tuesday again. Time for the Redefining Disability Project. There are some questions I'm going to skip because they don't apply to a sexagenarian (like school activity questions). It's all ancient history anyhow. I haven't been to school k-12 in decades even as a teacher and college graduations were at least a decade ago. Who really wants to hear rantings of an elder woman about how things were? What am I talking about??!! My readers read everything I write about what happened, but still school questions are out.


Is your family life affected by disability?
You better believe it on multiple fronts. I don't know if dying or having a terminal disease counts as disability, but my husband has been disabled since 2003. As his condition worsened, it been up to the gfmily to take up the slack for what he isn't/can't be doing any more.

After multiple spinal surgeries, I could no longer tie my own tennis shoes. Was I ever thankful I'd taught my older girls how to do it before my last two back surgeries. Now with my stroke, I'm depending of aides, family, and volunteers to do the things I can't like changing a light bulb or getting cobwebs near the ceiling. Since my stroke, I can't look up without severe vertigo to the point of falling. I can't operate a chainsaw or weed whacker with only one useable hand and arm, so I'm stuck depending on others. These are just a few instances of how our disabilities impact our life.

How long it takes to cook a meal even with a microwave is twice as long because of preparing and serving with one hand. I actually don't fry chicken any more for just the two of us because of the mess, but doesn't this plate of food look yummy? I buy it from Kentucky Fried Chicken or the grocery store deli because one store bought chicken breast will feed both of us.

Turning on a dime is now a four to six step process in walking, and in driving, it takes a steering knob on the wheel. The logistics of doing anything is twice if not quadruple more complicated. Putting the keys in the ignition means leaning around the steering wheel to do it because I can't use my right arm. The same thing goes for the cruise control, gear shifter, and wipers. They are all on the right. It also means letting go of the steering wheel. Totally not a safe thing to do. My other choice, letting someone else drive. I had a chauffeur for the first ten months after my stroke, my daughter. Then she got transferred to Savannah, 80 miles away. In fact, my closest family is 45 miles away now so I had to learn to do and adapt.

There's always room for adaption in your life, but you have to be open to it. I did away with my regular house broom and bought a push one like you use in the garage. It's way easier and faster sweeping the floors. I bought one of those nifty fan brushes to clean my ceiling fans with. Granted I look like a child trying to crack open a pinata when I do it, but the point is, I DO IT. It may not be a perfect cleaning of the blades, but they are a sight better than they were. And yes, I will have to wash my hair afterwards for those dust bunnies too.

So why can't I wait for others to do it for me? Well, I could just sit by and watch those dust bunnies turn into OVERWEIGHT rabbits, but my allergy to dust kicks in. Waiting causes me more problems in the long run and more money for a doctor and more drugs. Now light bulbs, I usually wait. I have lamps and four bulbs in the ceiling lights so I'm not totally in the dark. Not all those four bulbs will burn out at the same time.

For yard work, I'm at the mercy of other people's schedules. I actually do miss the yard work, but my grandsons do it most of the time. Now chain sawing bushes or trees takes their daddy to do, not that these teenage boys couldn't handle it. It's a me issue. I've learned that son-in-laws come and go, but my grandchildren are mine forever. It makes a difference to me.

Granted we Murpheys are a closed knit family and extended family group. I could call any one of my sister's spouses or one of my brothers to do things for me too. I just keep hating to ask them when they are dealing with other family issues. Remember, my first planned homestead land was 20 acres to feed and house everyone. My kin would drop everything to help and in that respect I'm luckier than most. But somehow, I feel guilty about asking them when I know they do what they can, when they can. That is also a me problem, but if I get desperate enough I will.

So how does disability affect families? In every way or plane of existence and on so many levels. From the sister that barely talks to you to the children who hug your neck every time they see you. In family life, what affects one,affects them all.


Sunday, December 14, 2014

Sunday Stroke Survival ~ All I Want for Christmas...

Actually, there are a lot of things I want for Christmas, but I ain't gonna get 'em. I realize this because I'm the caregiver in this house. You might call me Santa Incognito also because I do all the shopping and budgeting too. There is barely enough cash for groceries, house payments, utilities, and the occasional splurge for Mickey D's each month without borrowing from Peter to pay Paul. Drugs and doctor bills eat up the remainder of what would have been disposable income.

What I've been hankering for is a video camera. I started a YouTube channel years ago when I was making book trailers for myself and others. It has been gathering dust since my stroke. Being single (functional) handed takes a lot of time just doing what needs to be done. It's also a lot of trial and error on my part. What I wouldn't have given for someone to show me how to do in the beginning. It might have saved me some gray hairs. Whom am I kidding? I EARNED each and every one the hard way.

I have a lot of back to basic knowledge, and thought to start a channel on how I do things. Yes, I'd be joining a long list of homesteaders on YouTube, but my niche is different. I do it all now with only one working hand.

I raise a garden, chickens, and angora rabbits. We were almost totally on-the-grid, but off-the-grid in our home before my stroke and my husband's health downward turn. I've learned how to groom my rabbits for their fabulous wool, and yes, thanks to a fellow Raverly member, even spin that wool into yarn, single handedly. I also do everything that anybody else does like grocery shop, drive, cook, cleaning, etc. OTs can only show you so much. The rest you have to figure out yourself.

If I can do it one handed, I might just influence someone else who might be interested in doing it, but also serve as inspirational/instructional for other stroke survivors. Not that homesteading is easy. It's hard and doubly harder for a stroke survivor, but there are things that I do that have take away value.

Most of my new how-to knowledge has been garnered from watching videos on various sites and my stubbornness to do it. Let's face it, when you have an aphasic brain damage sometimes a picture speaks clearer than words. It is easier for me to understand if I hear and see the words, than read the words because of my dyslexia. So that's why videos are appealing to me. Quick less than ten minute segments that you can watch as many times as you want to. I must have watched the knitted Dew Drop Shawl video thirty times before and while making them.

Drool, drool, drool
Explanation aside, I still want a video camera because it would be easier to operate than a smart phone or tablet which would take a hand to hold leaving nothing to work with because there is only me to do it. Sure, I could run out to my local Wally World (Wal-Mart) with a hundred dollars or less and get a cheap model, but with electronics cheaper is not always better. I've been drooling over the GoPro Hero 4 video camera ever since John Anderson mentioned it to me.
Droo-o-ol, see how small it is?

It is compact and there are all sorts of mounts including one that fits on your head. This option really interested me because it eliminates the need for a tripod or hands holding it for filming. Wherever I focus my attention, it follows.

Now for the bad news, it's $400-$500 depending on the options you want. Talk about steep. It's way out of my budget. I can barely afford the head mount at $19.99. It might be worth it if I had a several thousand followers so YouTube would pay me. But I don't see that happening any time soon, but I can still email Santa...

So. dear, sweet Santa,
If you have a few extras of these GoPro Hero 4 video cameras with the head mount, I sure wouldn't mind getting one.
P.S. I've been a very good girl this year.
Notice the sugar dripping off the candy cane opening and the P.S.


Nothing is impossible with determination.


Friday, December 12, 2014

Thursday's Tumbles and Stumbles ~ Botox Troubles

Today's "Thursday's Tumbles and Stumbles" has to do with the side effects of Botox injections. They are miserable! After the last round of my Botox series, I suffered through flu like symptoms without a fever for a couple of days. I thought that would be the worse I would experience, but I was wrong. It was only the beginning.

It started about the week after my shots on the 25th. My series was done on the 20th. I was in a therapy session with my OT. It was just a vague achy feeling. What I like to call my-rode-hard-and-the-day -after. If you've ever pushed yourself past your level of endurance, woke up the next morning, and everything causes you pain, that's it except I didn't. I had a hangover without touching a drop of liquor. Sounds totally unfair, doesn't it?

Don't get me wrong. The Botox injections were working. Where I was getting 15 degrees of motion prior to the series, I got 75% movement and it was still an early return. The next week I got 90% of normal range or at least everything at mid line. This was fantastic and if I had felt better I would have been happy.

But I didn't feel well. My bladder response, have to go urge, was three minutes. There was plenty of time to get my AFO and shoes on, and make it to the bathroom. The response time after Thanksgiving weekend dropped to three seconds. That isn't enough time to turn around good, or even get up from a chair before the urine was pouring past the pad, past my underwear, and down my legs soaking my pants as it went. Definite signs of a bladder infection for me. I called my GP and got a prescription for Macrobid, an antibiotic.

But my body aches continued and intensified. I kept telling myself that it was just a flare up of my Fibromyalgia. I wasn't running a fever so it seemed like a logical judgement. I took a pain pill each night because I can't care for my hubby if I take it during the day. My left (functioning side) arm all the way down to my fingers and my leg started with muscular spasms. Not as painful as a charlie horse, but just enough pain to make me stop and say ouch.

But, my hip and spine were the worst on my right
nonfunctioning side. I will remind you that I have rods in my lower back and an artificial hip on that side. It was like the muscles were trying to move the immobile objects.I mentioned in another blog how I have to squeeze my gluteal muscles to engage my hamstring to take a step. Except now that these muscles were in constant spasm, my gait was off and the Botox relaxing the muscles around my peronal nerve, walking across the room was a problem. Bending over to pick something up off the floor was like playing Russian Roulette with my balance.

Then the wheezing started. At first it was only in the morning, but progressed into all day thing. I was having to use my steroid inhaler twice a day instead of as needed for my allergies. I was developing a head cold too. It became increasingly difficult coughing and clearing my upper respiratory track. Not to mention, the stabbing pains running through my back and hip with each cough. The stuff I coughed up was normal colored.

All this caused my heart to race more than usual. Which in turn caused me to take more
medicine to slow my heart down. I was also even more tired than usual with the added nonstop exertion. I was swelling up faster than my Lasix could handle. By swelling I mean abdomen looks like I'm six months pregnant, leg (defunct, stroked side) has major bulges on either side of where the straps are, and even my fingers. Not as bad as when I'm in congestive heart failure but close. My daily naps became a twice a day effort to have enough energy to make it through the day with the things I had to do until bedtime. Even still, time and time again, sleep was often interrupted by coughing fits during the attempt.

Through it all. I never ran a fever. Puzzled, I ran a search for answers on my computer. I had no idea which of my doctors to call...heart, arthritis, GP, allergist, or neurologist? Of course this decision making process happened on a weekend, doesn't it always? But it gave me time to make the decision. All the searches came up flu, except there was no fever or maybe an allergic reaction. Well, my memory told me that so that narrowed the field down some.

I recalled some of the side effects to Botox so I researched it. (Ding, ding, ding) we had a winner. Every single thing that was going on was listed under side effects of Botox. So Monday I called my neurologist.  The nurse practitioner suggested an antihistamine, but checking my chart she realized that I was already on three (pills, nose spray, and eye drops). So now begins the wait until my appointment time next week.

I'm actually concerned that the Botox treatments will stop because of the side effects. Without Botox, I'm destined for a life of pain and spasticity. Nobody, meaning researchers, have found the cause or cure for spasticity. This scares me because it hampers me more than my obvious disabilities. I've dealt with chronic pain for most of my adult life, but it's nothing compared to the pain I feel with the spasticity. Yes, I spent months in the beginning waiting on the approval for Botox, but the spasticity is far worse than two years ago with more muscles involved. I wouldn't be facing months but years of it with no reprieve.

So that's my stumble for this week. My darling hubby's condition has stabilized once again, or at least nothing critically or disastrously wrong happened. Thank God! I've had enough to deal with. How has your week been?



Tuesday, December 9, 2014

Redefining Disability Project~ Post #8

It's Tuesday again and time for a question from...
http://rosebfischer.com/2014/07/01/redefining-disability-an-interactive-blogging-project/  
Is your work or school life affected by disability?

Since I no longer work, teach, or go to school, I'll have to post from an older disability story.

After my divorce, I decided to go back to college again. You know me, a forever student. I'd succeeded getting out of my wheelchair, walking with two canes attached to my arms, and was down to one cane used while walking. While I could climb stairs with my cane, I wasn't great at climbing stairs. I couldn't carry my books because of their weight, so I had a wheel luggage cart with my book bag strapped to it.

Knowing my limitations, I carefully chose classes that were downstairs or there was elevator access to the classes. Dragging the cart up and down stairs with me walking with a cane was down right dangerous. There was one building that did not have elevator access and had classes upstairs. So I made sure I had none of my classes there. This was before ADA came into effect so there was very little recourse.

I was excited to be in college again. Brain power was my equalizer over a disabled body. I always did pretty well grades wise in college, if the National Honor Society is any indication. I chose Study Skills, which was a technical credit class because I had been out of college for ten years. It was the third day of class and there was a note on the door saying the class had been moved to the gym clear across campus. With a sigh, I walked over to the gym only to find the class was upstairs.

This was the one building without elevator access on campus. I looked up at the stairs.Knowing I couldn't make it to the first landing of the dog legged shaped stairwell. I finally made my way back to the Student Union feeling old beyond my years, and frustration and anger building to the breaking point.

I went to my usual table and a couple of friends were sitting there. I slung my wheeled cart towards them and it hit the wall as I sat down. I began blubbering like an idiot, angry tears streaming, unchecked down my cheeks. "I quit! I just can't do it!" My friends rushed to my side trying to find out what happened. Eventually the story came out. One of my friends ran upstairs to get the head of Student Affairs while another one ran to the girls restroom for some tissue.

After talking to the Vice President of the college, he assured me that it would be straightened out. He allowed me to wash my face, called my adviser, and then took me to the President's office. He explained my predicament. My adviser explained how we had looked at each class' location before registering and how we allowed travel time between classes so I wouldn't be late. The President listened carefully and then asked me how to make it right.

My demands...
1. More notice that class locations before changing them especially with handicapped students attending.
2. That the class that was moved upstairs be moved downstairs so I might attend.

He, the President, thought about it for a moment and agreed. He also arranged for security in their golf carts to take me to class and take me to my next class. He noted that I wasn't the only student with disabilities attending classes. They also might have needs that weren't being met. He looked me square in the eyes and asked if I minded being his liaison between the campus and these students. After what I had been through, I readily agreed. I became the first disabilities liaison person for the college before ADA made concessions mandatory.

In the first meeting between the students and myself, I was told several easily fixable
concessions and one harder one. I went back to the President with these problems. Within a week all these problem were solved. Each quarter afterwards, new students came with issues. They were weighed and always granted.

The extra wheelchair ramps took some time to complete because as a state agency they had get approval for funding and put the job out for bids but they were built as were automatic doors. We had three students who were paraplegic. By the time ADA was ratified our campus needed very few accommodations to be met. We, the students, had identified and the college had addressed most of the issues.

Oh as a post note to this story...
The student who ran upstairs to get the Vice President of Student Affairs was to become my present day husband.