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?

Thursday's Tumbles and Stumbles~ The Spoons of Energy

This blog is to show you not everything is hunky-Dorie in the land of the Murphey Saga. We face real issues just like most of y'all. We are human, not superhuman. We tumble and stumble through our lives. It is not a pity plea so please do not take it as such. It's just an illustration. Most of the emails I receive have basically been, OMG!, How do you do it?, and I have such admiration... Be aware that I don't write this for admiration. It's more or less write to show you you are not alone in this life.

I need a shower something awful. It's been weeks of birdy baths( quickie sponge baths). I

Notice these are teaspoons not tablespoon

have to look at what I have to do each and every morning. This chronic fatigue I've had since my first stroke has been a killer. And then, I look at how much energy each task is going to take. It's always a juggling match of what has to be done and what should be done. A shower is something I cheat and pass on because it totally wipes out three energy spoons between getting undressed, taking a shower, and getting dressed. Three spoons of energy is important when looking at at the most thirteen spoons worth of energy per day. Pictured are 12 spoons, but I gain an extra spoon with a two-hour nap.

Let's do the math everyone...

• I know the care of my husband during the day will take four spoons. 
• Fixing and eating meals can run two to three spoons a day depending on how much I have to prepare before cooking. 
• Care of my animals (cats, dogs, Guinea pig, and rabbits) will take another spoon if it's not a grooming or cage clean out day. If it's a grooming day or clean out day = 2 spoons.
• Hospice visits. Sometimes three a day one spoon.

I'm already up to EIGHT spoons out of twelve gone and I really haven't done anything yet and I took the minimum of each. I've got four to five left for the rest of the day.

Now add in or subtract...

• Therapy days-twice a week= Occupational therapy 1 spoon for each session.
• Grocery shopping= 2 spoons because I have to make a list, shop, and then bring the groceries in and put them away. It's really closer to three.
• Any other shopping like yarn, clothes, appliances, etc =an easy 2-3. Stores are huge!
• Each doctor appointments = a good one spoon if not two. Botox is definitely a 2 and my heart doctor is closer to 1 1/2 because of lab work I have to get before my appointment.
• Dropping off and picking up laundry= 1 spoon that's even with putting the folded clothes away. Now, if I did my own laundry= 3 spoons.
• Picking up take-out from a restaurant, even Mickey D's =1 spoon.
• Sweeping, vacuuming, dishes, dusting...you know, housework = an easy 2+ because the size of my house. I'd like to hire a housekeeper, but can't afford one.
• My every Wednesday Night Knitting group = 1 spoon.
• My once a month Stroke group = 1 spoon.
• Knitting or spinning wool= 1 spoon.
• Spending quality time with one grandchild = 1 spoon. I have eight.

Now, you see the actual juggling part. But there's a hitch in the twelve spoons of energy theory. Getting twelve spoons of energy is based on a good night's sleep (8-12 hours). I'm waking every two-four hours to administer morphine to my DH (darling hubby). If I do that twice a night that takes away one spoon easy before I even start my day.

No wonder I'm so exhausted all of the time! That's even without a bath.Yes, my kids were nice enough to install a walk-in tub the second Father's Day after my stroke, but I rarely have the time to really soak in it. The best I can do is stare longingly at it when I take a minute to go pee, or change my own diaper, or washing out urinals most times.

The last time I had a shower? Er, um, let me think...two weeks ago when my #1 daughter came for a visit. That sounds horrible doesn't it? But it's my cheat to make my short supply of energy last. I often said watching my growing kids or grandchildren, "I wish I could bottle their energy."

Wouldn't that truly be a blessing.

What has been your tumble or stumble during the week?

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.