Thursday, April 30, 2015

Thursday's Tumbles and Stumbles: Abscence

You may have noticed that my Thursday's postings have been missing. That's not because nothing has been happening at the Murphey Saga household. Just the opposite has been happening.

There has been tumbles and stumbles galore. I just haven't had time to write about it.

My darling hubby being the biggest stumble and tumble this month. His weight loss continues. In fact, his body is cannibalizing his organs now to gain the energy to keep breathing. His kidneys are failing. His heart beat is erratic. It won't be long until his liver starts to shut down too. His O2 sats average at 73 % out of 100% on 4 liters of continuous flow oxygen. He's passed the point of no return for oxygen levels and is on the downhill slide.He's also below 90 lbs. On the BMI scale his BMI is 19.5!

He has fallen out of bed a couple of times. I can't put the bed rail up because it takes two hands to operate. He is still trying to help me pick him back up into bed which throws me off balance. One such fall cracked two of his upper ribs. It makes repositioning him a nightmare pain wise. He is surrounded by pillows.

We've had the discussion about PEG tube or nasal-gastric tube for hydration and nutrition because he is choking more on swallowing. He now wants none. This is contrary to his living will signed six years ago. It's my job to make sure his wants are obeyed so we have many such conversations during his lucid moments.

I've started grinding his meds and putting them in chocolate pudding for him to take. It also meant discontinuing some of his meds like his potassium and Lasix. He understands that he will probably go into Congestive Heart Failure. He is also discontinuing his anti-depressant in lieu of Hadol (yes, the hallucinations continue). I'm repeating and reminding him of conversations constantly. His mind and reasoning is deteriorating because of lack of oxygen to the brain. I'm basically discontinuing all his pill meds so we (the hospice nurse and I) can put him on a pump. Yes, we've finally reached that stage.

I again stress that if you have not picked your Durable Power of Attorney for Healthcare, do so today. No matter what your age is, do it! You never know what tomorrow will bring. Have the important conversation about your wishes now while your are able.

Now about me...
The spasticity is coming back now that the Botox is wearing off but the dry needling is working so well that I will forgo my next Botox series of  injections. My foot is able to evert on command and dorsiflex for 2 - 20 reps now. I actually stood with full weight on it and took one step WITHOUT WEARING MY AFO.  I've only been able to do it once so far but its a start. 

The residual effects of one treatment is lasting about two weeks in my leg. My therapist started working on my quads to improve my hip movement. He hit too many spots on my thigh during one session and I was tripping over invisible lint on the floor again For a few days. He's backed off now because it seems that I have to have a little bit of spasticity to do what I need to do. But then again, my right side is where I have my hip and knee replacements too.

Our baby girl decide to go into premature labor. The hospital stopped it. Little Connor isn't due to make his official appearance until June 16th. He's a healthy 3 lbs right now while momma has been put on bed rest. Bed rest is so much fun with an active three-year old running around. She's in Tx so this momma has been stressing out because I can't be there.

The thing about being stressed is the spasticity kicks in so bad. The good Lord knows, I am definitely loaded with stress, but this too shall pass.

Well that's about all my news. How have y'all been?

Tuesday, April 28, 2015

Redefining Disability Project: Post #26

Time for another question...

What things are most important to you when it comes to media representation for people with disabilities or your disability in particular?

I absolutely hate when the media plays the "poor pitiful thing" ploy. I've been involved with many fund raisers for the Arthritis Foundation. When they play the sympathy card, I tend to bow out. 

My daughter, who was afflicted with Juvenile Rheumatoid Arthritis, did her part for as long as she could remember back with fund raising also. She was diagnosed at 18 months old and is now almost 40. That's a pretty long time. She didn't like to appear on camera so we taped her doing ordinary kid stuff with concessions and various braces. She always portrayed an normal kid just having fun except with the physical therapist. That brought tears to her eyes usually. She did appear, at 10 years old, once on a live telethon and described what an ordinary day for her was like, but that was it. That was okay with her. It was her paying the Foundation back for umpteen dozen braces and splints they partially funded for her over the years. It was told in a matter-of-fact matter, not don't you pity me. Even today, she doesn't mention the fact that she has Rheumatoid Arthritis unless she has to.
What was astounding to me was all the "give $$ emails" I've gotten from the National Stroke Association since I first contacted them almost three years ago. I figured they were run like the Arthritis Foundation with resources available for stroke survivors. Very little in resources available that would really help but once you get on their list every week there is something in my email about donating money. 

I'm like "Doh! I haven't got any money to donate. I had a stroke! Isn't that what you are supposed to do is help me?"
 As far as regular media hype about disabilities due to stroke, the ad campaigns are pretty accurate. But more valuable information is gotten from actual stroke survivors who get tired of hearing the same things from the professionals like: 
  • Every stroke is different.
  • No answers about recovery or how to recover.
  • Plateaus and "It's the best you're going to recover."
None of this helps no one when they are asking for information. At best, it's a cop out. At worst, it's possibly untrue.

The NSA (National Stroke Association) is more geared for scarfing up your money and offering little in return. Well, I take that back. When I was in hospital rehab, I got tons of fact, figures, etc on how to prevent and identify strokes. How much sense does that make after the fact??? That's where a majority of money is spent...on stroke awareness and prevention rather than being of assistance to us who've had a stroke. Isn't that like closing the barn door after your horse have run out? As a stroke survivor, that's my take on this organization.

I much prefer the stroke tribe (online stroke survivors) and my support group. They have more information and help than the NSA could ever hope for.

I'm not knocking the importance of prevention and public awareness, I don't. It's important to keep others from being in my boat. My question is this...only one-third of all strokes die, what about the survivors?

Yes, stroke accounts for a large percentage of people with life long lasting disabilities. The media is quick to shout when this public figure or that suffers a stroke, but it doesn't depict the whole story. I guess that's one of the reasons so many of us blog and self-publish books. We honestly do a better job than the media. If we actually had the media behind us, we could move mountains.

When the media covers strokes, it is glossed over. They show the worst case scenarios rather than functioning people in spite of their disabilities. It goes back it the "poor pitiful thing" attitude. Cases in point (I'm going to age myself now), Dwight D. Eisenhower had a stroke in 1957 and had aphasia. He remained President for four more years afterwards. Sharon Stone had a stroke and is still acting.

We are regular people. Yes, we've had a stroke, but life goes on. That's why we are called survivors. We have visible and not so visible disabilities, but we carry on.

Sunday, April 26, 2015

Sunday Stroke Survival: The 2015 Neuro Film Festival

Each year since my stroke I've toyed with the idea of making a film for this...once again I've failed to act on it. The deadline was February 25th. Heaving a big sigh. Maybe next year...again.

It's not like I don't have anything to say. The Good Lord knows as well as my readers know that I have plenty to say. Having up to five minutes to do it in is great.

Some ideas I had for topics...all having to do with adjusting to my life after a stroke.
  1. Adaptable homesteading single-handedly was the first major topic I could think. It would involve cooking, preserving, gardening, and animal care.
  2. The second was sort of based on the previous theme, by going into detail about angora rabbit care, harvesting their wool, spinning it into yarn, and how I knit now.
  3. When the stroke survivor is the primary caregiver for another in their house.
  4. Dry Needling. Yep I'm sold on this modality. A before, during and after of upper and lower limb spasticity.
You've got to admit either of the three topics would be a unique perspective for a stroke survivor. Not many of us survivors are in survival/self sufficient mode. All three directly relate to me and my life, but it also offers hope to other survivors because they are not walking in my shoes. It's the doubled edged sword of "Whew, I'm glad that this is not me after a stroke" and "If she can do it maybe I can too."

That should read "New Resting angle"
The fourth would be an informational video of my experiences. I'm still in awe of how well this works. I'm now up to fifteen reps of dorsiflex/evert on my foot and the ability is lasting two days. My therapist and I have come to the conclusion that there is too many contractures in my wrist for it to stay straight in a neutral position, but we are working on it. It was bound to happen with the limited amount of stretching I could do with my wrist. But still my wrist only cocks at a 30 degree angle instead of 90+ degrees now. Every session fills me with such hope for recovery.

Not only am I facing challenges that every other homesteader faces but I'm basically doing it on my own with no assistance because I don't have the help of a fully able spouse. There in lies part of the problem. There is no one able to video tape me doing any of this. The other part of the problem is not having a video camera. I don't own a tablet or one of those smart phones to even make do. The only video editor I have is the one that came with my computer. So I really have no way of making a video at all short of doing a power point video and doing a voice over.

I've been inspired by the videos I've seen over the past three years and look forward to them this year. Anyhow, I'm still dreaming of the day when I make my own video and submit it. Not that the $1,000 prize is nothing to sneeze at. I could do a lot with that. The trip to Washington, D.C. Well that's a hurdle. But I've used to live there so it isn't so exciting to me as it would be to some others. I couldn't leave my hubby for that trip. There's always respite care if push came to shove.

Nothing is impossible with determination.

Tuesday, April 21, 2015

Redefining Disability Project: Post #25
Time again for another question...
This time a tough love kind of answer as seen though my quirky nature. So be warned.

If you could “cure” the disabilities that affect your life, would you? Why or why not?

Could I cure it and would I? Yes,  I wouldn't wish a stroke on my best friend or worst enemy. Hold that thought. Come to think of it, my worst enemy had a stroke and died before he had to deal with the disabilities, and my best friend had a stroke too. Hmmm. I may have to rethink this statement.

But there is something to be said about the recovery process and what you learn that you might not have. Think of all the adaptions you have to make in your life after a stroke and paralysis. I mean losing function of half your body is pretty devastating. Having to live like this is pretty challenging every single day. It's not like you can take a vacation to rest from it, but you have to deal with it. But wouldn't that be great to leave the physical impairments behind and truly enjoy a vacation? Would you have enjoyed it as much if you weren't disabled. You probably wouldn't know the difference.

Humans as a whole never know what they are capable of until they are faced with it. I wouldn't have tried half the things I do now with only one working hand if I hadn't had my strokes. I mean who in their right mind would want to? I wouldn't have near the self-satisfaction then as I do now in the things I can do.

It's a growth experience. Not that I wasn't fully grown or experienced before my stroke, but it's just different now. If you are given something you don't appreciate it near as much as something you had to fight or struggle for it to gain it. Maybe that's why I've always been a fighter. I've earned everything I've gotten. Personally, I've got some of the attitude of the button here----------->
I really didn't need another growth experience, but here I am again. Well, if I must go through yet another one, I'm going to do the best I can. Others may do the same or let it beat them down. Me, I'm going to meet the challenge. I'm hard headed like that.

If there was an instantaneous cure for stroke and paralysis, would having a stroke be that great of a deal? Probably not, but we'd be cheating ourselves of a lot of victories. Would we have the opportunity of recovering? Nope. Would we have the self-satisfaction of conquering the odds? Nope. But still I wish there was a little pill that would cure it all and make it all a bad dream. There are plenty of other things to make growth experience out of.

Sunday, April 19, 2015

Sunday Stroke Survival: Assistance

Over the past few decades, the term assistive technology has become muddled with modern technological advances. It is actually a very thin line that differentiates the two these days.

Speakers added to telephones for hand free communication, touch screens, and assorted other devices are available for the general public's consumption and not just the handicapped. It wasn't always so. It makes life and doing easier for everyone.

What sort of new fangled stuff did I buy after my stroke to make me capable of doing what I needed to be done in spite of my limitations? Very little. A hemi walker, raised toilet seat, a wheelchair, and Swedish adaptive cutting board, a rocker T knife which was quickly replaced by an Ulu (thanks John Anderson), a steering knob, a shower chair, a long handled bath scrubber, and a cane. That's it.

$3.99 + shipping on
Having listed the above, what am I still using after almost three years? The Ulu, cutting board,steering knob, the cane, the bath scrubber, hand held spraying shower head, and the raised seat toilet (sort of). Which items are considered a specialty medical item or durable goods...The cane, the toilet and the cutting board. Notice how small the list of actual assistive technology is? My cane is only used when traveling rough terrain so it's a part-time use thing now.

Of course I did remodel my bathroom so it was handicap assessable too. I now have a walk-in tub and handicapped toilet in my bathroom eliminating the need for a shower chair and the shower head. My old porcelain throne needed to be replaced so smart shopping at my local Re-Store (habitat for humanity) had a used, raised seat one for $40. A girl has got to have a luxurious soak in the tub once in a while...with bubbles!

The other major "can't live without" for me is the Ulu and my kitchen shears (both are normal use items) because I love to cook. The Swedish cutting board, I'm still finding adaptive uses for that are not what it is designed for like holding my grater.

The steering knob on the steering wheel of my car only truly comes in handy when I'm making hard turns. The rest of the time I can drive just fine without it.

So why did I buy all this stuff to begin with that is now collecting dust in my house...because someone told me I needed to. I only used my wheelchair a couple of times just after I got out of the hospital. Did I get the over $600 use out of it? Not for my benefit over the few months it took me to transition out of it and onto a cane. Although it does make moving my hubby around easier now. The raised portable potty is now a fixture in my living room for my hubby's use also. I only used it in my bathroom for about six months. The hemi walker is now used as a catch all for my hubby's benefit. As goes to most of the other durable medical supplies I bought for me after my used for my hubby's benefit. Thank goodness or I'd really be upset.

Now I'll admit that I'm luckier than quite a few other stroke survivors out there because I need few adaptive equipment. I'm also more creatively thinking outside the box than most which is an added plus. I honestly hate spending hard earned money on short-lived things in this disposable era.

Oh, I almost forgot a bigger in my new elevated raised garden beds. But that's mostly for these old bones of mine. They were making too many old woman complaints and I really don't feel that old. I would have eventually transitioned into them anyhow.

Adaptive...assistive, it's all the same thing. My stubbornness allows for hard scrutiny before I run out and buy something. I have to be darn sure I can't do  without it. I'll use whatever I have available first. It has to be a need. Sure I could run out and spend $1,000's on this or that to making this or that job easier but my question is this...why?

Tuesday, April 14, 2015

Redefining Disability Project: Post #23

The question for today...

What would you like the general public to know about your disabilities, disability in general, or any other relevant subject?

Hmm, not to bad of a question. I'm fairly opinionated about the public reaction when faced with me.
  • In general people with disabilities do not need your pity. 
  • They may need your help from time to time though. Either offer or wait to be asked.
  • Assume nothing. You know what they say about assume.
These are two biggies with me. The "poor pitiful thing" looks just infuriates me. Yes, I may only have on working arm, one leg not braces, walk with a cane, and may talk strange, BUT I'm still capable of so much. Don't assume I can't because I'll probably surprise you.

If you open doors all the time for others, then go ahead and open it for me. If you don't- don't do it because you assume I need you to. I have been disabled by my stroke for close to three years now, I'm perfectly able to door it myself. If not, I'll ask for help.

In a nut shell that's it.