Friday, January 24, 2014

Limbo or In the Box Again

I'm in limbo or in the box again.  According to
3. an intermediate, transitional, or midway state or place.
4. a place or state of imprisonment or confinement.

I just call it "in a box." I can't go left or right, forward or backwards, up or down. It's a pretty frustrating feeling, but I've learned not to fight it and just be. Yeah, I've been here many times before. It's never an enviable or pleasant situation. But then there is a comfort to be here too.

I can here you now...she's finally reached the edge of cliff and jumped, she's positively insane, poor thing she's lost it. None of the above.

Like I've said before I know this position very well having been put in the box umpteen dozen times in my life. Why is there "comfort" in box? Well it depends on your point of view. For me, I'm sheltered and protected by the box in limbo. It's a time to fall back into myself for self discovery, It's a place where I can recharge my batteries for what's to come.

For years, I didn't have this wisdom. I railed against the box or being put in limbo. I kept trying to escape, to do, to accomplish anything. I wasn't released until I settled down. Similar to a child throwing a tantrum when faced with something against their wishes, I'd come out exhausted, totally spent and unable to handle what came next.

So how come I'm in limbo now? I'm waiting.
  • Waiting for finances to ease up so I can breathe again. 
  • Hampered by my stroke from achieving what I want to one handed and brain like scrambled eggs with no rhyme or reason of linear logical thought processes like writing Don't Get Your Panties in a Wad.  
  • Waiting and dreading my husband dying. 
  • Trying to push against the daily chronic fatigue since my stroke and being stymied. Notice I didn't say failing. 
  • Waiting for life to get back to "normal" or the next set of  crises. Hey, I'm an action/adventure junkie, what can I say. 
  • Waiting for the decubitus of my foot to heal so I can at least walk without daggers being thrust into my foot with each step.
  • Waiting for an ankle fusion surgery so the decubitus will be history.
  • Waiting for television shows to come off their mid season hiatus. 
  • Waiting on February 11th when I can get my next series of Botox injections so I can sort of move again without fighting spastic muscles. 
  • Waiting for the weather to warm so I can plant my garden. 
So I'm just stuck right now in waiting. The dam will break and real life will barge in breaking the confines of the box and I will be hit from all sides again. So in way being in the box isn't so bad after all.

Nothing is impossible with determination except the box.

Thursday, January 16, 2014

Another Milestone Downward and Venting

It seems all I'm writing about these days are doom and gloom reports. Sigh!

That isn't why I started this blog. It's really hard to find hope in hopelessness. No I'm not depressed, just battle weary just like my hubby. A tiny pin light shines in the distance of life ever after while maintaining a toe hold to our current life. But daily life goes on. The beds still need changing. The clothes still need to be folded. Dishes done. Animals cared for. Cooking of meals must be prepared for.  Etc, etc, etc.

It started this afternoon just before the hospice nurse visited. The nagging cough that my hubby has been experiencing changed. He's on Tussin to help him bring up the junk in his lungs. He can no longer cough hard enough to bring it up on his own.

His sputum went from milky to green and I knew he was in pneumonia again instead of just congestion. Then he brought up blood. Just a little from a broken vessel in his throat. No, I didn't panic but he did. I know the difference in the blood brought up. Calming him down and fixing him a warm drink, we sat and waited for the "official" word. We've been here too many times before.

The nurse came and ordered an antibiotic for him. There just isn't anything else to do. He already has oxygen, inhalants, and breathing treatments that he does several times a day. So now we sit and wait through another crisis. What a difference twelve hours makes. Last night he was congested with wheezing in the upper left quadrant of his lung to today with crackling and gurgling in the base. Definitely more fluid there.

It gets very frustrating at times. It's at times like this my GITG (Give It To God) box reaches the overflow point. Others ask me how I can remain so calm and matter of fact about it all. That's how. I do what is necessary but don't buy into the worry about it category. The fact is I don't want to have to deal with it. Worry doesn't change facts and rarely change outcomes. I realize this and accept it. It's not that I don't care because believe me, I do.

Of course, I did take my frustrations out on a poor can of vegetarian baked beans tonight. I tried to open it with my electric can opener and it refused to balance against the blade. Instead of cutting a nice clean cut it gapped and pulled away from the blade. I snatched it from the can opener and threw it across the kitchen. I walked across the kitchen and threw it back the other way. Of course the gapped cut lid spewed tomato sauce across the floor as it flew. I looked at my handiwork and realized how stupid I was. Now I had to clean it up. Believe me, I'm not immuned to good, ol' temper tantrums.

After the clean up, I got another can of beans and fixed the hot dog my husband wanted. Three bites and he was done. It took almost an hour for him to eat those three bites. He cracked a tooth over the weekend which adds to my stress. I can't take him to the dentist. So he is eating ever more slower. While I make a point of eating meals with him, it takes him forever. It also takes me an hour to was what few dishes I use for a meal.

Thanks for reading.

Saturday, January 11, 2014

When the SHTF Happens Revolt!

I've had a rather rough 24 hours.

3:30am- I'm sleeping peacefully in my bed. Awoke to an ominous rumble in my bowels. Just one then then my body spewed forth a yucky surprise before my brain had time to process what it meant. Thank God for diapers! It gave me time to pull back the three blankets I was under because it was cold in the house and I once again opted for leaving the space heater in the office. I donned my AFO after pulling the Velcro free of the blanket. You know those furry, micro plush ones that catches everything but oh so warm? Grabbed my tennis shoes and put them on. The whole time more stuff was spewing forth in danger of flooding all over everything.

I clean up while sitting on the commode, and then I realized my nightgown was not clear of my upper thigh and rump on my affected side. More mess as I clear it and carefully pull the soiled garment trying not to touch my body and hair one handed. Feat accomplished, another rumble issues from my bowls. Now naked in a 58 degree bathroom because in my rush to the commode I forgot to turn on the radiant floor heating switch, I plopped myself down on the commode. Easier clean up this time. I shoved a was of toilet paper between my cheeks to from a plug.

4:00 am-I hear my husband call from the living room asking if I was all right. Knowing he couldn't hear me if I answered, I waddled naked down the chilly hallway into the living room to answer him. I knew if I didn't answer him, he would try and get up by himself to find out. In my mind, the phrase, "Are we having fun yet?" replayed over and over again.

I assured him I was fine and retucked him under the covers. He drifted off to sleep and I waddle off towards the bedroom to get some clothes on by way of another pit stop to the bathroom. Montezuma's Revenge had me but good. I toyed with the idea of putting on pants but figured they would just get in the way. So I donned my sweatshirt that read...
Bet you saw that coming, didn't you? 


It seemed appropriate for the situation. Yeah, my wardrobe has changed a bit since my stroke. Things like this aren't considered appropriate dress for a minister, but my shirts now say it all. You honestly haven't lived until you have to put on an AFO, and shoes before you can go to the bathroom, and changing your clothes around them! I now cast modesty aside and go with what's easier. Even if it means having cold legs. I knew the Revenge wasn't finished with me yet because of the way my bowels grumbled.

 5:30 am-I make my way into the office by way of the bathroom. I take 2 Imodium. I debate whether to get couple more hours of sleep or not. The decision not to was based on a couple of factors: at 7am my hubby was due for more meds, and I wanted to make darn sure there wasn't an explosive wake up call again. So I whiled away my time answering emails and posting some comments on blogs in between mad rushes to the bathroom. The Revenge was persistent. I steadfastly took one Imodium after each session.

7:00 am finally arrives and I'm fighting to stay awake out of sheer exhaustion. I took my morning meds including my Lasix.  I give my hubby his meds. One pill at a time followed by a swallow of water sometimes two. My hubby needs the urinal. When he is able he has to pee standing up and refuses to go in his diaper. So I finagle his bed and help him up. This morning was one of his stubborn mornings he chose to be stubborn about it. I'm standing there supporting him while he is doing his business and it takes f-o-r-e-v-e-r!
I rest my head against his shoulder remembering other cold mornings that we snuggled in the bed together. I'm so tired. The Revenge was finally over or at least I thought it was. It had been half an hour since I heard or felt the dreaded rumblings before an explosive evacuation of my bowels.

I get him settled back into bed and pointed out his medicine box and told him I was going back to bed for a couple hours. His next meds weren't due until 10am. He would have to be responsible for taking them if I wasn't awake. 

11am- I awoke with a start. I'd overslept his med time. I threw off the warm covers, struggled into my AFO and shoes. I had to pee bad! I didn't make it to the bathroom before the flood. The urine soaked my socks which meant I had to change them. I pulled off my pull ups and waddled bare butt into the bedroom for a clean one, and socks lying on the bed to do it. I decided to put on my pants this time. The hospice aide was due a little bit later. No sense in "shocking" or maybe flashing (a better term) her. All pretense or hope of getting a shower was a fleeting flight out the window.

Walking into the living room, I found my DH (darling hubby) slumped to one side, sitting up with his meds and a bottle of water in his lap sound asleep.  He tried but didn't succeed. I raised the head of the bed and straightened him up on his pillows. I took the water bottle still with the cap on and his meds, and placed them on his bedside table. Stroking the side of his face I called his name. As usual he opened his eyes and smiled at me. "It's late. You have to take your meds."

I let the rabbit out for his daily romp while I cleaned his cage and got his fodder, goodies, and hay for the day. I know the Guinea Pig, Bella, will run away to various parts of the cage while I do it. Even though she, the cats, and puppies have touched noses, and did the customary "Let's be friends" routine, she's still timid around them. Buddy makes a beeline for my hubby's bed like he always does. He's gotten into the habit of having to say "good morning" to him. By"him" I mean both of them.

I water and set up the next days fodder and by then my hubby is either ready to start the day with a cup of coffee and a tangerine given to us by a neighbor. The tangerines are organically grown and we trade off fruit in their season. His tangerines for my apples. I know my hubby will also want his donuts so I open a new bag. I check his blood pressure and oxygen level before deciding whether or not to give my hubby his Lasix like a good, little nurse. They are both crappy low so no Lasix today.

I shoo Buddy to other haunts so my hubby can eat in peace. I leave the cage door open so Bella can socialize with the other animals and Buddy can jump in if he wants. Even though I've taught him to come when called, having him do it on his own sure beats chasing him to put him back in his cage. My hubby decides he wants to go back to sleep, but I tell him he can't because the aide is coming so I get him up into his electric wheelchair and he motors off to the office bumping into the chair rail and wainscoting as he goes. He utters a curse every time he bumps into things.

Noon- My youngest called. Her babysitter for James is sick, can I watch him? Sure, I got NOTHING else to do today. Meanwhile I check on the outside animals. Fresh water and feed, a quick clean up, and they are set for the day. I was glad I put foam insulation around their automatic waterers. This time hindsight wasn't 20/20 but the foresight was. I go back inside to play on the computer and chat with the hubby for a bit.
It's so chilly my hubby wants another cup of coffee. Thank you Missy Chrissy, daughter #2, for the Keurig single cup coffee maker she bought him for Christmas. It's so fast. My hubby rarely has a second cup of coffee these days. I'm hoping the extra coffee will keep him awake until after the aide and grandson leave.

1:30pm- The aide and my daughter arrive at the same time! It's a mad house. James has to give his grandfather a hug and kisses before anything else but the aide is trying to get him into the bath tub. My daughter is gathering clothes for the weekly washing, but my hubby's electric wheelchair is in the way. She wants to do this before she leaves for work. She moves the wheelchair enough to slide into the bedroom but it blocks the bathroom door so the aide, my hubby, and James are trapped in a 5x7 bathroom until she is done. Better yet, my grandson wails in a high pitch tone because he wants out!

I just look down at my sweatshirt. "Are we having fun yet?" and shake my head. I move the wheelchair freeing James and saving the other persons in the bathroom's ears. At the same time my daughter approaches the bedroom door with a heaping basket of laundry blocking her view. Can you guess what happened next? You got it! Clothes went flying the same time James reached the wheelchair and he got buried under a mountain of dirty clothes and bedding! Better yet. It was followed by my wicker basket landing on his head like a cherry on top of a sundae.

I extricated and picked him up moving him to the safety of my office. The aide started picking up the clothes and placing them back into the basket. She placed the basket in the wheelchair and moved the chair out of my daughter's way. She thanks her, grabs the basket and goes to work. She won't get off until 10 pm, but daughter #2 will pick him up when she gets off work. Meanwhile I do the grandmother thing and feed my grandson cookies before lunch.

The aide leaves after getting my hubby settled into bed for a nap. James is laid down for a nap after eating all of his lunch. Blessed silence! I sink into my desk chair knowing I should be doing my rehab exercises but lacking the energy to do it. Aw heck, I did enough walking, bending, lifting and stretching in the last hour to count as a workout, I justified to myself. All the energy I recovered from my morning nap is gone and I'm exhausted! I ventured outside to a pleasing warm short lived sunshine. A pile of pine cones James had gathered earlier sat next to my outdoor rocking chair. The rabbits and guinea pig love to chew on them. The arctic blast is over! YEAH!!!!

I hear James stirring in the bedroom and call to him. He arrives carrying his shoes and one sock. Have you ever tried changing a squirming toddler's diaper, putting his socks and shoes on one handed? Try it and you'll get a whole new appreciation for having two working hands. It is now 12 hours since I got up for the first time this morning. The day is only half over. One more hour until my daughter picks up my grandson.
My grandson steps on my already stretched headset cord and it snaps off at the plug. My husband is now calling to get up and pee. I go to tend to him while my grandson is pushing on my butt in the hall saying "move" and "wanna play."
I tend to my husband and sit him in his wheelchair at his request. My grandson brings him his stacking rings and proceeds to take it apart so Grandpa can play with him. When I try to intervene, James shakes his head violently and snatching the rings away from me. I look over his head at my DH and shrugged. He shrugged back and begins to play with him.
I had to pee so I left them to their game. I'm on the commode when my cell phone rings. Of course it's in the office. To top it off someone is knocking at the door. I flush the toilet and reach my cell phone just as it stops ringing. The phone beeps for a voice mail as I answer the door. Whoever was messaging would have to wait. It was my youngest daughter's girl friend from work coming to pick James up at the door. James wasn't having any of that. He was playing with his grandpa and proceeds to pitch a fit when the girl friend grabs him to carry him off. I know that she watches him for my daughter so I don't worry. She's a back-up sitter.

I breathe a sigh of relief as she carries a kicking and screaming two-year old out the door. That boy never wants to leave his grandparents' house like all our grands. As much as James pitches fits for everyone else, he rarely does it with us. Thank God! I prefer the distraction method instead of screaming at a child not to scream.

I drove to the Family Dollar a get a new headset. I really should not have been driving as tired as I was, but I did. I picked up a Di Giorno pizza while I was there. It was going to be an easy night for me. As luck would have it. Bad luck that is, I drove home at rush hour. ARGH! Fifteen minutes waiting to pull out onto the main road home. You know the type of traffic I'm talking about. Bumper to bumper one way and clear in the oncoming lane and vice versa! I pulled into my driveway half a mile away and just sat in the car for a few moments to decompress.

I look up and saw my front door wide open. A wave of panic swept through me. I was sure I'd closed and locked the door before I left. An equal wave of relief swept through me when I saw my husband's wheelchair peek out the door. He was looking to see if I had made it home yet because I'd been gone over thirty minutes. He was in the midst of a full fledged panic attack. The one thing bad about my house is no low windows. It's raining now too.

By 8 pm, I'm done in. After every thirty minutes of waking my husband a reminding him to eat his one piece of pizza. He asks for another drink so I get up and get it for. I felt something squishy and a foot of pain go through my right (affected) foot. With drinks in hand (2 cans of Coke Zero) I hobbled back to the office to access the damage. We took my shoes, AFO, and gently pulled off my sock to a blood stained mess. Yep, I'd broken open the pressure sore yet again.  
It takes time to dress and bandage a foot you have no control over. First it weaves and wavers all over the place in an unsupported lift and then the clonus sets in. The clonus stops for the ointment to be put on and then starts again. I have trouble doing this by myself so my foot is resting on my husband's lap while he tries to administer to my wound, and clucking like an old mother hen. Yes, I am loved. The phone message I finally got around to listening to was my youngest daughter telling me that her friend was picking up James and she was at my door.

By the time 930 pm rolls around, my youngest daughter pounds on my door. She had brought the Coke Zero I'd ask her for. Then she was changing uniforms, her other job called and said that the guy covering the shift had a heart attack could she possibly come in until they found a replacement for him. She felt obligated to go in. She knew it meant covering the entire shift because nobody wanted to work the graveyard shift. Then, she was out the door. No sense in trying to rest my tired body now his and my medicines are due over the next two hours. I'll just sit at my desk and play an item search game.

I had just given the last medicine until 7am and crawled into bed. I was too tired to even take my pants, shoes, and AFO off, but I did. I just got comfort with the blankets pulled up to  my chin when I heard it...a transformer blew. The same time the power went out. That meant my husband's oxygen condenser wasn't working. I waited a few seconds for the solar back-up system to turn on like it usually did. It didn't! (that's the end of the clocks. I think.
I reached for my AFO and shoes in the dark. Of course, the Velcro on the blasted things worked against me. I had left my battery powered lantern in the living room when my #2 daughter took down Christmas and she needed it to see in the attic. I grabbed his 1 lb oxygen cylinder back-up.  Grumbling, almost cursing, groped my way into the living room. He was sitting bolt upright in bed gasping for breath. I pulled the nasal cannula off his face and replaced it with the one on the bottle. He's gripping a tiny LED flashlight in his hand. See I'd already taken my night meds of Zanaflex, Baclofen and Valium to boot and they were in my system well.

"No air," came to me in raspy breathing. I grabbed his penlight and looked at the gauge...empty. I found the lantern and made my way to the office to get his big D cylinder of oxygen. The one on wheels. Transferred the regulator by penlight in my mouth to the big tank. I got him connected and called the power company. We're on an emergency response list. The address is flagged on their computer. The time frame is three hours to get the power back on or they'll have to move their trucks for an ambulance.

I got my hubby relaxed enough to sleep and he was snoring gently in his bed. I'm sitting in his wheelchair waiting for the power to be restored so I can switch him back to his condenser. The minutes tick by. I hear one large truck after another go down my street so I know they are working on it. I'm trying to mentally figure out why the solar batteries didn't kick in like they were supposed to. It's still raining fairly hard outside and it's lulling me into the sleep my body and the drugs in my body want me to do.

I keep jerking myself awake knowing I've got to keep watch. This goes on for an eternity or so it feels. In a startling, blinding moment the lights kick on. I don't know for sure whether GA Power got their line fixed or the solar back-up decided to run again, but either way I had power. I switched out his oxygen canulas and stumbled off to bed. (Okay so I lied about the clocks).
I awoke this morning at 9am feeling like I'd been through a war or two. My hubby, God bless him, got his own 7am medicine. I didn't even hear him. I was that exhausted. The hospice nurse is due for a visit today. My hubby sounds like he is going into pneumonia again. 

After peeing my pants to wake up this morning, a rude awakening but not as rude as the day before.  The circuit breaker flipped on the solar back-up is why it didn't come on upon investigation so it was GA Power that saved the day. I've already called my hubby's oxygen supply company for replacement bottles. Fixed him his morning cup of coffee and a tangerine cut up. Done the meds for him and me. Now all's that left is the outside livestock and wait for hospice.

On looking in the mirror this morning and surveying what the night or wee hours had wrought I knew it wasn't going to get any better when I looked in the bathroom mirror this morning and saw this...
Yep, that's right HORNS!

A sure sign to me that it was going be another cantankerous day and my day began anew. I'm wearing my "Me?? Sarcastic...nah!!" t-shirt today just to forewarn everyone. Even though I wet my hair and tried to brush them down, they still remain. I'm going to be devilish and in revolt today.

Nothing is impossible with determination.

Wednesday, January 8, 2014

It's COLD in the Golden Isles!

Time is Short Photography
The arctic blast has really done a number on us. For the second day in a row it's down right chilly!

Several years ago we decided to forgo the $50 a month gas bill. The only thing using gas was my furnace, but still I paid each month for the luxury of having it. Even at the coldest part of the year which lasted maybe two months, it was rarely over $75 a month. Yeah, I'm lucky ain't I?

But temperatures in the 20s is almost unheard of in the Golden Isles of Georgia. The last time we had snow, other than flurries, was 1988! It seemed like a good deal at the time saving us over $500 in just the warmer months. We opted for a wood burning stove and made pellets during the summer months out of dead leaves and shredded newspaper. More on this in my book Are You a Survivalist or a Prepper? Nifty how I slid that plug in, huh.

For really colder nights we supplemented our heat with small electric space heaters. It just used free power from our solar panels. But with my DH (darling hubby) on constant flow oxygen, lighting the wood burning stove is down right dangerous! One space heater is dedicated to the living room for my DH and the animals and the other one is in the office. No, I don't carry it into bedroom at night. I just hunker down under heavy blankets. A royal pain when I get up in the mornings. When I'm in the kitchen the oven is most likely going so it's warm enough in there to break a sweat.

During the daylight hours it usually warms up some and warms the house, but not the past two days! The inside temperature has dropped to 63 degrees by the bathroom thermometer. Talk about a rude awakening! This is the first time my house temp fell below 70 degrees this winter. I really am looking forward to this cold snap being over.

The other problem this cold blast has raised is the dripping of pipes so they don't freeze. I've talked about my current incontinence problems after my stroke here already. There's something about the cold weather, Lasix, and the sound of dripping pipes that give a whole new meaning to Gotta go. Gotta go. Gotta go right now! An Indian dancing for rain has nothing on me. Gotta dash!

Nothing is impossible with determination.