Wednesday, May 20, 2015

Quick update

Thanks all! 
My DH seems to be rallying this week her managed to fill a whole urinal yesterday, but that's what four kidneys will get you. Yes he has 4 kidneys. It is thought he absorb his twin en utero. His pain levels have dropped to five out of ten with the he feels more human. I bought a goat bell so I can hear him if he needs me. All he has to do is push it across the bed table and I'll hear it even when I'm outside. Yes, it's that loud. Scares the cats and dogs. Each day we take the time to live, laugh, and love every moment we can.

Our youngest is in labor with her son, Connor. In fact she's been in labor with contractions five minutes apart for over a week now. The doctor is waiting until her water breaks before doing a c-section. He giving Connor every moment he can to give the baby time to strengthen and age before delivering him. Our daughter isn't due until June 16th.

Me, I'm hanging in there. I'm still doing my dry needling with Botox injections on the 4th. Yes, I'm going to do another series of shots. There's just too much going on to even try to do without. My forward progress has stopped and am now on maintenance to stop the pain so I'm pain free. A huge blessing especially now.

Take care all.

Wednesday, May 6, 2015

Leave of Absence for a While

I know you knew this would be coming...I'm taking a leave of absence from blogging. As you can imagine with my hubby so close to the end, my emotions and time have been extremely limited.

But know, that I am in pretty good spirits and try to laugh daily while I attend to him.

How long will I be away...I dunno, but I will be back. I'll try to keep y'all posted. I'm just an email away.

Tuesday, May 5, 2015

Redefining Disability Project: Post #27

What barriers do you encounter in your daily life when it comes to disability?

 As you can imagine only having one side of your body totally undependable and not having the ability of clear speech is definitely limiting.

Until just recently, I could not stand and walk for any great length of time or distance. The spasticity in my lower leg from my stroke made it too painful. I couldn't push a grocery cart around a store for more than fifteen minutes. Try shopping in Wal-Mart like that. Since the dry needling has shut down the spasticity to a dull roar, it's considerably easier getting around on foot power alone.

With my shoulder regaining most of it's mobility, thanks to the needling to my bicep, I'm able to carry things positioned between my elbow and body, and under the arm better. It's almost like being normal again. Well sort of. The headache of how I was going to carry a drink while walking with a cane in my functioning hand is remedied. But still not being able to use my right hand and wrist is very limiting.

My speech though improved is still halting with the aphasia. I'd rather do emails than talk on the phone. Staying on topic is still problematic. 

The chronic fatigue is better but still a long way from being ideal. I still us the twelve spoons to measure my activity and energy level. I often fall short by the end of the day even with naps. This past week I had to do the grocery shopping over a three-day period just to get it done. That in itself was exhausting. Add my therapy sessions at two times a week and it had me going and going.

Now that I'm basically out of pain from the spasticity, (hip hip hooray!) my Fibromyalgia decided it was its turn to override its medication for about 48 hours. My spine from previous surgeries ached to the point of me yelping when I moved it. My one functioning hand refused to close it a tight fist. I ended up prying my fingers loose on my nonfunctioning hand in order to hold onto something tight enough.

The temperature has been reaching the mid 80's and I have yet to turn on my air conditioning because of my hubby. He's still wearing long sleeves and has two blankets on his bed. Meanwhile, I'm pouring sweat like a nervous bridegroom, and my heart is not behaving because of it. I've had to double my arrhythmia medicines to keep my heart rate below 120 BPM.

I'm just disabled in too many ways! There are just too many hurdles to juggle and jump.

Most times, I can do what I need to do and still finding alternative ways of making forward progress. Very little blocks me totally. I'm adaptable that way. But if anything takes two hands to operate, I have to wait on others to assist me. That becomes a royal pain like the yard work. I still can't operate the chain saw, hedge clippers or lawn mower safely. So with the warmer temperatures and the rain, my yard has become an eyesore while I wait.

Sunday, May 3, 2015

Sunday Stroke Survival: Killing Two Birds with One Stone?

How many of us sit at our desk too much? I'm raising my hand. How about you? How are you at multitasking? Can you walk and chew gum at the same time? How about walk and type?

If you have about $500 to spare then I've heard of a solution for you...
The Trek Desk. It fits over any standard treadmill. Is this cool or what?

The idea of having one of these is a great idea, but there a couple of things that hold me back from running out to purchase one with my life style.

1) The cost.
After my stroke any hope of keeping my meager nest egg flew out the window. Continuing therapy is a borrowing from Peter to pay Paul thing. Luxury items, which category this would fall in, are taboo for my budget. Yes, there is no denying the health benefits it offers, but still it doesn't produce an income so, it's not going to happen.

2) Space.
The average treadmill's dimensions are 71 x 31 x 53 inches and weighs 139 lbs. Which you have to purchase separately. (
The Trek Desk is 34x 72 inches.
It could almost be a DYI project, hmmmm
It takes up space and dedicated space too. It's not like you can slide the whole contraption under you bed or stick in in the closet when not in use.  I could see a narrower version to go across my cross trainer working better. I still have yet had the time to workout for thirty minutes on my NordicTrack. I'm also looking to downsizing my life rather than fill it up with things.

3) Dedicated time.
Now I could see use in this if all I did was sit at my desk all day, but that is not the case in my lifestyle. I'm up and down, and all around during my computer time. I may check my emails (deleting junk), read a couple and then have to go pee, empty urinals, change a diaper, cook, shop, play with the dogs, or talk to the hubby before I go back to my desk. I think the longest uninterrupted time at a stretch on my computer is 1/2 an hour. Although I will occasionally I might stream a movie or TV show, that only happens on rare occasions, but I'm still getting interruptions.

I'm out in the garden, at my spinning wheel, knitting, caring for animals or my hubby to spend too much dedicated time anywhere. I did purchase a sitting stepper off Amazon. It does help strengthen my calf muscles while I do sit. I can start and stop doing that in an instant. Every little bit helps.

I definitely have a coordination problem since my strokes. I can't talk and walk at the same time. If two things involves focus, I have difficulty. My concentration is not as bad now as when I had my strokes, but I still have difficulties accomplishing two tasks at the same time. This is what males who can't multitask must feel like. Boy, this totally sucks. Before all my male readers get up in arms about what I just said, it is a proven fact that females are better at multitasking than their male counterparts. Guys don't take it so hard. There are tons of stuff that you are better at than females. I can't think of anything right now, but don't mind me. I'm brain damaged.

Well, this is another item that goes in the folder as "It would be nice but..." for future reference. Maybe if I win the lottery...have an unknown relative pass leaving me $$millions$$... or maybe when we populate Mars. This is just my two cents on this product. If you have the space for it, the time for it, and a few hundred to spare...go for it. It sure beats sitting on your duff all day. Kill two birds with one stone. Get your exercise while surfing. Great idea, but it just isn't practical for me.

Nothing is impossible with determination.

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?