The forecast is - tense!

The wake-up call came at 7:10 this morning when the dialysis nurse burst into the room just ahead of the construction workers outside who like to start their day by shouting at each other at 7:20. Stacy had a rough night and mine wasn't much better. Cat naps seem to be the only kind of sleep I get and I wake up disoriented and anxious. The surgeon seems to have a "an opinion" of what he thinks should be done for Stacy. There was talk about removing the dialysis catheter and implanting a new one but the very young surgeon thinks it's time to try another fistula meaning needles which means bleeding problems and horrendous bruising! We've been that route and it was as usuccessful as home dialysis was! Why change what works? Why make Stacy's life more difficult? And why not listen the needs of the patient?

The fever is gone and unlike April, there isn't much of a sign of a bacterial infection. The catheter removal at this stage is "precautionary." Okay!

We didn't make it!

It turns out that the month of May was a fluke when there wasn't one trip to the hospital! We're making up for it this month by having two! Last night (Monday) Stacy was struck down first by chills followed by a fever of 103 and an invitation to the meet the doctor at the hospital! I absolutely couldn't deal with the questions that the ER nurses and doctors were going to run us through and to my surprise Stacy's doctor asked that she be admitted directly into a room. Imagine my surprise and delight! Even so we didn't roll in to the room until 9:30 and then there were the lab tests and a walk to xray for films of her chest and my cot finally arrived at midnight. Two nurses had a heck of a time getting an IV into her veins so that the antibiotic could be given. It was around 2 am when Stacy and I drifted off to sleep.

The jackhammers and delivery of tons of gravel started at 7:15 right outside of the window and I thought we were in the middle of war zone! The hospital remodel won't be done fast enough.

For Sale

Stacy's migraines, seizures, fainting spells, high blood pressure, vomiting and dialysis plus my chronic pain and brain fog are not making life on the home-front easy to handle.

Last Wednesday night I discovered her on the floor in the bathroom with blood on her hands and face. She had fallen off of the toilet and was tangled in her sweat pants and the bathroom towel she'd grabbed from the back of the door when she tumbled to the floor. It took me quite awhile to get her on her feet because she was non-responsive. The blood was from cuts on two fingers and I have no idea what caused them. I don't know whether she had a seizure or fainted because she's done both over the last two weeks. Every day brings a new crisis to get through and my hysteria levels are at an all time high! Of course the more tense I get the more pain I have which makes for long sleepless nights cursing at about my life.

Today's adventure for Stacy has involved vomiting, a migraine, and fatique. Mine has been so full of pain in every joint and muscle at a 10+ that I can't find a comfortable position to land in. To be able to sleep in order to take a break from my world is but a dream.

A Credo For Support

A Credo For Support

Do Not see my disability as the problem, recognize that my disability is an attribute.

Do Not see my disability as a deficit. It is you who see me as deviant and helpless.

Do not try to fix me because I am not broken.

Support me. I can make my contribution to the community in my own way.

Be a person who listens and does not take my struggle away from me by trying to make it all better.

Do Not use theories and strategies on me.

Be with me.

And when we struggle with each other, let that give rise to self-reflection.

Do Not try to control me. I have a right to my power as a person.

What you call non-compliance or manipulation may actually be the only way I can exert some control over my life.

Do Not teach me to be obedient, submissive, and polite.

Do Not see me as your client.

I am your fellow citizen. See me as your neighbor.

Remember, none of us can be self-sufficient.

Do Not try to modify my behavior.

Be still and listen.

What you define as inappropriate may be my attempt to communicate with you in the only way I can.

Do Not try to change me, you have no right.

Help me learn what I want to know.

Do Not hide your uncertainty behind "professional" distance.

I need to feel entitled to say NO if I am to protect myself.

Do Not be charitable towards me.

Be my ally against those who exploit me for their own gratification.

Do Not try to be my friend. I deserve more than that.Get to know me. We may become friends.

Do Not help me, even if it does make you feel good.

Ask if I need your help. Let me show you how you can best assist me.

Do Not admire me. A desire to live a full life does not warrant adoration.

Respect me, for respect presumes equity.

Do Not tell, correct, and lead. Listen, Support, and Follow.

Do Not work on me. Work with me.

Written by Norman Kunc and Emma Van der Klift

Life is Often Surreal

Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference. -- Virginia Satir

It's not often that I'm able to live my life from a surreal distance - something akin to watching it on a movie screen - but last weeks 3-night hospitalization proved to be just that. Surreal.

Dialysis seemed to go okay but practically immediately when Stacy arrived home she started vomiting
every 10 minutes. Made a phone call to the doctor. "What's her BP? Give her Promethazine and once her stomach settles down give her an additional BP med. and then about an hour later let me know how her
BP is." Yeah, right! Keeping a pill works really well when one is vomiting every 10 minutes . . .

Three hours later at 7:30 we were waiting to be seen in the ER. At 10pm lab tests were finally being run and I knew that it was time to send Mom home before she feel off of the stool. At 11pm it was decided that Stacy's BP, vomiting and migraine needed more attention so plans were made to stay overnight. At 1am we finally rolled into a room, the largest one I'd ever seen in the hospital, and I kept asking where my cot was. Talk about being a pest, but I'd spent most of the day in bed with vertigo and other dumb symptoms and was beyond being able to cope.

After a snack of crackers and peanut butter I fell into a deep sleep and was shocked to wake up at 5:30 in a cot in the hospital. Mom arrived at 9am and sent me home for some much needed sleep. Stacy was moved out of the fabulous suite like room into a broom-closet size room set up for dialysis. Wouldn't you think that dialysis patients required a large room?

Three nights in the hospital, new BP meds that finally lowered Stacy's BP and we were back home. It seemed more like a dream than another blip in the road.