Sunday, December 4, 2016

Sunday Stroke Survival: Things that Make Me Go ARGH! Revisited

Everyone has them. I'm not immuned to "ARGH!" moment, but the past couple weeks there have been almost daily events.

ARGH! #1
 I tried something new with this blog. I tried to link this blog to our website. Instead it redirected to our google + page. So I believe all my previous posts are there. So if you were trying to find it...it's there, I think. I also think I've got it all back to normal to appear here now. We'll see when this publishes.

ARGH! #2
Before I left my previous cardiologist, she had performed all of the necessary information gathering for my new cardiologist except for an ultrasound of my legs to check for PAD (peripheral artery disease). So I had one done once I got established with my new cardiologist. The results were troubling. Coupled with severe leg cramps several times a night and pain, I agreed to another heart cath and angio of my legs. If there was significant blockages, stenting would be performed or I'd be sent to a vascular surgeon to have it corrected.

At this point I should mention, I had a coronary artery disease and a heart attack before age 50. I also have a very bad family history in heart disease from both parents. The heart attack damaged two valve in my heart and with time (10 years) the stress on my heart has damaged a third of four total valves. I'm heart broken which limits me even greater than my strokes. Oh, and my strokes were from blood clots forming in my heart which went to my brain. All my doctors agree that I'm a very sick woman, but that's only their opinion.

Angio of triple A like mine
Okay so I go through all of these tests, after waking Mel at 4 AM to take me, and the results...the cramping is NOT a blood supply problem. So now I'm still having leg cramping and pain from some mysterious, unknown cause. So this test didn't do anything. Surprisingly, what the angio did show was an Abdominal Aortic Aneursym (Triple A). It's still small so it bears watching although it could rupture and kill me. My thoughts on the matter, everything else is trying to kill me, why not this too? But hey I'm still here in spite of everything.

Don't think I'm taking this lightly. I'm not. This is serious. It has less than a 10% survival rate if it ruptures. It will be taken care of. It should be as easy as a stent placement with only a day in the hospital.

ARGH! #3
We built the new coop and run for the chickens. The chickens have flown the coop literally! It took less than two hours for the main rooster, Whitie, to figure out he could fly over the 4' fence safely and show the others how it was done. They were back to roosting on our front porch.

I got irritated with it all. I swiped them off with my cane. They just waited a few minutes and were right back again. I grabbed a sleeve of stale crackers and led them back to their new roosting spot inside the fence. A couple of them decided to fly the coop again. My trusty cane had a workout until they decided to see it my way. I had to do this for a few days before it became a habit for them. Now they at least roost in the new chicken area instead of our porch. I take victories when I can because once daylight shines they are back free ranging everywhere. They still lay eggs in Mel's tool box and behind the front storm door, so I can at least gather eggs. The egg laying bins need to be built. The hens like their privacy and security. Then I'll have to train them to the new set up.


ARGH! #4
We finally got a good drenching rain!! It's been a long, dry summer and fall. We actually had puddles on the property that weren't from a busted water pipe! They lasted for two days before they dried up/soaked in. Of course, it would storm the day we had to drive at 5 AM to the hospital for my procedure. But we were thankful anyhow. It's supposed to rain today according to the forecast, we'll see. It gave us a reprieve of sorts.

As far as our water conservation techniques go, it looked something like this.
  • Early AM, while the well had overnight for the spring to refill, I'd draw five gallons of water.  
1 for the household animals
2 for the canning pot on the wood stove
1 gallon for cooking
1 gallons for outside animals (rabbits and chickens)
  • Early afternoon
6 gallons for washing clothes (1 load by machine)
  • Early evening
2 gallons for iced tea
Mel's 5 minute shower and my sponge bath.
  • Late evening
2 gallons for the wood stove
3 gallons to run the dish washer.
1 gallon for incidents or in case the well goes dry overnight so we can at least have tea in the morning. Hot tea is our coffee in the morning.

Hope all is going well with you. As always ...
Nothing is impossible.

Sunday, November 6, 2016

Sunday Stroke Survival: What's Going On

Thanks to Obamacare <choke, choke>, my medical insurance changed as it did for most of us. As a result, instead of having 75 hours for PT, OT, and speech a year coverage I had 40 hrs of PT, 40 hrs of OT, and 40 hrs of speech therapies for a calendar year. This was good and bad. My premiums definitely went up. Big surprise there...not.

Old history, right? It's been enforce for a couple of years now. With these limitations in mind, here's how I work my therapy visits to last a whole year. Or, at least since I lost my old physical therapy group. I'll start the year with physical therapy (PT). Since I normally get Botox injections in January, it makes sense. I get both dry needling and PT stretching to gain the most I can. Since I've got a year of dry needling behind me, I can track when dry needling is for the optimum results. I use this accumulated data accordingly. I get Botox injections every 3 months so my therapies schedule sort of goes like this...

OT once a week for for 30-minute session the two weeks before and after Botox is scheduled. Just general heat, e-stim, and stretches to the best of the therapist ability. Believe me when I say, that even a 20 degree stretch on spastic muscles in my arm is a great relief. It hurts so good.


Two weeks after Botox is twice a week PT and dry needling. They are 30-45 minute sessions. This will continue for about 6 weeks.

I'll take a break from therapy for two weeks, and then start all over again. It comes pretty close to all of my PT and OT hours used by the end of the year. The beautiful part is the $30 copay disappears by February each year because not only have I met my deductible, but also my maximum out of pocket expense for the rest of the year. That equals to 80 hours of PT and OT a year. I actually gained 5 hours of contact time not including speech. What a novel concept.
 
Notice I only used my PT and OT hours. I still have 40 hrs I can use for speech therapy each year. I haven't yet used any speech therapy hours since the change. While in the Golden Isles, my stroke support group also had free, weekly communications meeting where we practiced speech and writing. Which was a blessing when my insurance only paid for 75 hours of all three. But since the change, the weekly meetings were enough, but I got plenty of practice with this blog and speaking for my husband.

Since moving to north Georgia, I don't see the need for structured appointments either. I write two blogs a week, videos on YouTube, and have a roommate who was in graduate school for speech therapy before moving here. No, Mel didn't graduate nor become an actual speech therapist, but she is an excellent prompter. Having someone around to interpret is a valuable resource for the aphasic. You get plenty of practice speaking.

My writing as in holding a pen to paper hasn't improved much, but then most of the time I'm on my computer typing. It takes me three to four days to write out a blog post so sometimes this blog suffers from the effort I use up on my homesteading blog. The YouTube channel keeps both of us busy producing quality products. Yes, I may mess up my words, but as with the blog, I can edit it out or correct myself while filming. I'll often mention my aphasia especially when I mess up too bad. I've coined phrases like "arm pit tight" instead of fingertip tight while canning and "using the tools God gave me" when using my teeth to open or close zipper lock bags. They have been endearing phrases to my two able handed viewers. To my disabled viewers, it's shown them nifty tricks of doing things. If I make a mess, I'll always clean it up while cooking. For pouring things from one big pot into another, I have my lovely assistant to help. I make no excuses and tell no lies. What you see is what you get just like this blog.

Remember...
Nothing is impossible.

Sunday, October 16, 2016

Sunday Stroke Survival: Incontinence Revisited

I'm not sure what is going on with my bladder, but it ain't good. In the past month, I have had more "accidents" than dry days. I think I may have a bladder infection. This is usually a first sign for me...no bladder control. Later, the pain urination, and pus or blood starts. It's been so bad that adult diapers have been a relief to wear.

Anyone that wears these know that it must be the most uncomfortable undergarment ever made. It doesn't matter which brand you choose, it poorly fits and the elastic plastic outside rubs the skin raw. But still it's better than the alternative of urine soaked clothing. The reason I switched from my pads was because of flooding. It's not a question of little spurts, but almost emptying my bladder with no sphincter control... none, zip, bupkiss. I don't even have time to stand up and head to the bathroom. Just the act of gravity turns the faucet on. Speaking of faucets, I now have to go before I run any tap. It doesn't matter if I just made the trek to the commode five minutes before, I will have to go again. I know my diuretic plays a part in this also. My warning mechanism of a full bladder ceases to function with bladder and kidney infections.

This is quite embarrassing in public situations like the grocery store as you can imagine. I'll go before leaving home, arrive at the market, and immediately have to go again. It's only five minutes to the store! And, that's with purposely waiting until six hours has past since taking my Lasix. Going before then is an accident waiting for the chance to happen. Since my bladder infections start this way since my strokes, my old PCP wrote a standing order for sulfur based antibiotic to combat the issue. I no longer have that luxury since I've moved. I have to wait until next week to see my new PCP before I can get a prescription. That's after I drive 35 minutes to get to his office. Yes, I'll be making several pit stops along the way. These pills are HUGE! As if I don't have enough issues with swallowing. But, ya gotta do what ya have to do.

This week I used the last of the disposable diapers leftover from the case for my husband. Hospice ordered the wrong size and then ordered the right size so I actually had one and a half cases left upon his death. I've treated these as gold and used them sparingly for almost a year and a half.

At this point, I'm thinking sustainable resources (not to mention cost). A 20 pack of disposable pads will cost $6-8 a package and some months I can go through two of them. That's $12 a month times 4 1/2 years! You do the math because I don't want to add up how much money I've spent. Heavy flow menstrual pads are cheaper than the urinary incontinence pads. I priced washable pads and diapers for adults. Wowzer! I could buy a really nice vacation with the cost of a week's worth.

 After four and a half years of using disposable pads and diapers, I'm switching. This winter, I'll be sewing washable urinary incontinence pads. You heard me right, and yes, I'll video it and cross post it here. Here's my design process. Problem solving 101.

I haven't found a pattern I like yet. We are talking a thinner liquid that moves faster than a menstrual flow so it would have to be thicker and more absorbent. Then I had a brilliant idea. Use one of the pads which work the best for me. I'll have to add a little bit of fabric for seam allowances and making the wings long enough to overlap each other, but I can do that.

I've tried many brands over the years while I've combated this issue. When I have a choice, my favorite is the always maxi pads. The size and shape are comfortable. For me, the length covers both my orifices. While the absorbancy is a bit iffy, I can't fault the design. I am using it for a purpose it wasn't designed for. I love the always incontinence pads. They work fantastic, but oh, the price!

A pattern found, I could focus my mind on the other issues like what it's made of. A 100% cotton is desirable. After watching a vast number of YouTube videos on constructing cloth menstrual pads, I realized that several layers of flannel or terry cloth was not going to handle that much liquid. The pad would need twenty to forty layers and be a bulky mess. What could be a thin, absorbent, and natural material? I thought of wool, but quickly discarded it. Wool, while absorbent also gets very heavy when wet. I can see me now. "Oops, I had an accident." "Oops, my panties are now around my ankles!" No thank you. I went back to cotton. I idea of stitching in thousands of cotton balls entered my mind. I'm Abby Normal, not insane! Rolled cotton as in bandages was my next thought. After calculating how many rolls I would need and the price, I nixed that idea. What kind of padding would be thick enough? Then I remembered my grandma always swearing by cotton quilt batting. I could make several dozen pads out of a twin size quilt pad. They could be stitched together (quilted) and provide channels for urine to follow. Ding, ding, ding! We have a winner!

Waterproofing and fastening them in place. I had to wear it under my clothes and didn't want telltale signs soaking through. I still want retain some shreds of dignity. Plus, do you realize how uncomfortable wet breeches are? I still have to walk from where I am to where I can change the pad. It also had to be thin enough to carry a spare in my pocket. I started looking at homemade cloth diapers. Now a days they are streamlined. Gone are the flat diapers I once put on my children. I know because I searched for them when I was looking for the padding of my pads. Washable diapers have become shaped and sized just like disposables. I started searching for the nifty plastic fasteners and the fabric they used for protecting infant clothing. I found it all a my local JoAnn's Fabrics. The waterproof material is called PUL (PolyUrethane Laminate) While not a natural product nor cheap ($6.49 a yard), it was the answer I was looking for. It being 64" wide and being able to get a dozen pads out of a quarter yard of fabric made this fabric a win-win in my book. I opted for white from the slew of colors and patterns. Remember, I wear white, cotton granny panties too.


Now, I have a plan. I did buy some pretty printed, cotton flannel to serve as the cover fabric next to my skin. Nothing to bold or bright because they are going to hold my accidents. Nice little rosebuds on a white background seemed to strike my fancy. Hey, I'm still a girl. They don't have to be totally utilitarian. They may not be pretty for long, but I've found a recipe for an all natural protein stain remover also on YouTube that might have them looking pretty for a while.

So why am I waiting until winter to do all of these? The one thing that I can't control is my free time. During the winter months, the garden is a 8x16 greenhouse. A huge difference that four garden beds. The days are shorter and colder so I won't be outside as much. I'll still have to tend to the rabbits, chickens, dogs, and cats, but there won't be a garden to tend, or produce to dehydrate, can, or freeze. 

The days being shorter means building project will cease at sundown. Yes, there will be the added activities of spinning and combing angora and other fibers, and knitting galore. We don't do this in the summer because most times we are too bone tired, and it's too hot. My battery operated sewing machine will be put to good use. A treadle machine is what I wanted to get, but time and space constraints won out. Oh, and the cost for everything the material, quilt batting, those nifty snaps and their special pliers, thread, and even my sewing machine cost thrown in was under $50 or equivalent to three months of disposable pads. Yes, I'll have to launder them, but I have to wash clothes anyhow. Why I didn't do this before? Just call it a brain fart.


Nothing is impossible.



Sunday, October 9, 2016

Introducing...

I'm introducing something new here.
Murphey Fíon Behan.
Proud parents David and Jennifer, my #4 daughter.
Born 10/4/2016 at 1:27 PM.
Weight and length 8 lbs 4 oz and 20.5 inches long.
Both mother and son doing well.
He joins brothers James and Connor.

Murphey was supposed to be born on my late husband's birthday on the 18th, but a he decided to beat Hurricane Matthew to town. You might remember back in August, she moved into my Golden Isles home. Jennifer was in full, hard labor when she delivered Murphey via c-section. They were released from the hospital within 48 hours and were whisked away, by a voluntary evacuation, to Charlotte, NC. I know it had to be a rough ride for Jenn. Why so far away? David's has family there. He didn't want to take any chances with their family.

Sunday, September 11, 2016

Sunday Stroke Survival: Keeping Hope Alive

Today, on the anniversary of the day the twin towers fell in New York, I ponder just how to keep hope alive. Not only alive, but thriving towards post stroke recovery. It is really difficult when faced with years post stroke to keep even the smallest faith that recovery is even possible.

As time passes, hope can be lost in the shuffle of day to day living. This is a blessing and a curse. A blessing because it helps you cope with the day to day struggle and frustration that recovery hasn't happened yet. A curse because it not striving for recovery but adapting to the change. It's not an all encompassing and consuming thought.When thoughts become a back burner things, you no longer have a driving will to push for it. But honestly, having that force is exhausting which is why as time passes it dissipates. No one can survive the do or die drive for an indefinite period of time.

We, as survivors, make concessions. We adapt our thinking and goals for survival's sake. There's not a day that goes by that I don't think, "when I get my arm, hand, or leg back." But it's not a thought in the minute by minute passage of time through the day as it was during the first few months after my strokes.

So How Do You Keep Hope Alive?
Focus on the small stuff. What can you do now compared to just after your stroke. I do this quite often here. 
Remind yourself often of your accomplishments. I also do that here on this blog. 
Tell yourself often, "It could be worse. You could have another stroke." Wait. I did that. It reset all my progress back to square 1.
Where there's a will there's a way. You don't fail to hope UNLESS you give up. 
Be angry at the powers that be for not doing better for us. How's that working for you Dean?
Get off your duff and do something...anything! Enough said.
When all else fails PRAY. Isn't that when we usually pray? When there is nothing left for us to do? We always want control of the uncontrollable.


So how do you keep hope alive when the waiting has taken years and you see no meaningful, miraculous results? 


Nothing is impossible.