On the borderlands

Lately I have been tired. I mean that tired that goes deep in the bone and interferes with thinking. There are reasons for this. My kidneys are border Stage V (meaning the GFR is 33). GFR is a test that shows how good the kidneys are working. GFR 35 is officially Stage V kidney disease.

I do a lot of things to keep my kidneys stable. I eat fresh food, distill my own water, and walk twice a day. Plus I watch my blood pressure and take pills to keep my blood pressure low. Low blood pressure can also cause tiredness and so can the pills.

Another part of my problem is my disease… I found the government is now calling it a condition… which considering calling it a condition is not accurate. It is a disease. At this point I am in stable condition, but only because I take chemo, rest when I need to, avoid viruses and colds, and large crowds. If there is an infectious disease in a crowd, it will find me. So all of these things are vital to keeping me stable. If I don’t do them, I find myself either on higher chemo like cychlophosphamide or in the hospital, which is even more dangerous for me.

The pills for keeping my immune system suppressed also cause this tiredness. Think of taking oral chemo for the rest of your life. Every time I take a pill, my stomach gets nauseous for an hour or two. It slows my walk. If I don’t take a pill the inflammation in my body can go unchecked. I have been to the point where every joint and muscle in my body hurt. Since I was not allowed to take a pain pill, I would put the pain way above ten.

So I am careful of all these things. I am walking a knife’s edge. Just the other day I was told that I should get a job like my last one. The last time I was stable I had a job as a Loan Officer over ten years ago. I was stable. My kidneys went to Stage V. My disease flared and I was on cychlophosphamide for six months. It took five years to get stable again. I was on prednisone for over ten years.

I have been off prednisone for almost two years. To be on prednisone that long causes damage to the muscles, how your body uses fat, and joints. Because of the medication, I now have fibromyalgia, gout, and other conditions. Because of the medication, I am losing teeth.

I took a long look in the mirror today. I could see why others think I am in perfectly good health. I really look good for a 54 year old woman. I even look younger than most. My signs of disease are not obvious. But they are there — the tiredness in the eyes and the bags under the same eyes.

I have dropped from exhaustion, like having my puppet strings cut. I didn’t know I was that tired.

I was reading that Flannery O’Connor also had a chronic illness, lupus. I had wondered where she got her inspiration when I read her in college. It was hard for me to get into her writings. Since I now have chronic systemic illness, I read her work differently.

She walked on the borderlands before me. I am walking them now.

 

Here comes the sun

DSC00462This last week I have been dealing with triple digit weather and a burned out air conditioning unit. Trust Murphy.

I had to use a lot of the tricks we used to do to keep cool during the hottest summers without an electrical appliance to do the job.

So here are my solutions when I realized that my apartment was only ten degrees cooler than outside:

1. Fans – I have three fans that I placed strategically around the apartment to help with the flow of air.

2. Water – I made sure that there was enough water in the dog bowl and my water glass. I drank every hour so that I stayed hydrated. In such heat you don’t realize that you are sweating because the dryness whisks away the sweat.

3. Closed the curtains– so that the sun wouldn’t heat up the spaces.

4. Computers, TVs, appliances – I turned off all of the appliances except the refrigerator so I didn’t have any heat generators in the house. This also meant that I pulled out any charging units.

Just doing 3 and 4, I was able to drop the heat in the apartment down another twenty degrees. Since the heat outside was between 108 to 113 degrees, these precautions helped me to stay well.

The problem with such heat is that the body wants to shut down and save energy. Heat exhaustion and heat stroke are both real concerns. At this point I was more worried about Foxy than myself. When I gave her water, I drank water, which helped me too. Foxy is a small black dog and too much heat is too much heat for her.

I did the other usual things like call the apartment complex. I found out that they couldn’t repair the unit. The unit had to be ordered and replaced. They were able to send me a small A/C unit a day later. It keeps the bedroom cool so that I can sleep. Another problem with so much heat is that you need to sleep, but you can’t sleep.

Many years ago when the heat was high (not quite in the triple digits), my father would do his work in the early morning and the late evenings. He was a ranch foreman. In the middle of the heat, the entire family would retire to the basement which stayed about 72 degrees and either rested or played quietly.

We didn’t have electrical lines carrying electricity for our refrigerators and gadgets. We listened to the radio one hour every night so that the batteries would last longer. We did have an electrical generator, a small motor that sucked gasoline. But, it was expensive to use. Sometimes we had to conserve the gasoline for the trucks and farm equipment.

We were tougher then.

So I survived last week. I will have a new A/C unit this week. TG. I finished a couple of cross-stitch pieces and soon I will finish the last cross-stitch that my late-hubby was stitching before he died.

I have many of his finished pieces. Last September, a few days after his death, I took his daughters to the apartment to give the cross-stitch pieces to them. When I looked at the back, I saw the message in his handwriting: Given to my darling wife, Cynthia. I love you, forever.

I love you forever too.

A step into the light

lsgate

The sun’s rays peeped through my bedroom window. I stretched and limped into the kitchen for a cup of coffee. The normal routine is comforting. I don’t strain to hear him say “get up sleepy head” or any of the morning jokes.

I start the morning chores without crying into his shirts and pants. I have already given away most of his clothes, although I do wear his Pendleton shirts. They feel like a hug from him. Still I am a little apprehensive about the door, where I put a lot of his things. It opens sometimes by itself. Inside his his tools, his grave flag, and some of his coats. He was into Emergency preparedness. Soon I will go through his go-bag, but not yet.

I start a grocery list for me. I am still trying to figure out ways to make food for only one person. After his death, I couldn’t even look at food. It meant that we would sit down for dinner and talk. Afterwards we would watch the news and I would lean against him with his arm around me. Yes, when we fed each other, it meant more than when we said, “I love you.” Still live goes on and I must eat.

I don’t get that quick shock when I see his picture anymore. It still hurts that he is gone, but the stabs are not as intense and the heart is not as raw.

Many years ago I learned a truth. If I ignore this grief, it will hurt for far longer. I get these sudden urges to send him a joke to his email address or to tell him the newest outrage. He is gone.

There is a little light though. I am writing. I finally finished a rough draft of a story. Plus I enjoy my walks with my dog. I am not affronted by life. When I get a little stronger, I will take photos again.

He wanted me to be happy and to enjoy my life. Not today. Not tomorrow and maybe not this year. When the memories become sweet again, then I will have stepped fully into the light.

Writing Rituals

This morning, I made coffee, walked the dog, and sat down in front of the computer for a facebook binge. Part of the problem that I have lately is that I escape into facebook and talk to other people who are writing or having problems. I use social networking instead of writing. I need to change that.

In my most productive writing period. I had a whiteboard with the name of the novel and the chapters. I would write down what came next etc, etc. Then I had my rituals to get me into the trance-like state that I called writing.

These were my writing rituals–

1. Have a cup of coffee where I could sip

2. Light a candle, preferably one with scent

3. Turn on some writing music

4. Do a ten minutes clean out my mind by writing. Usually using a pen and paper. I can complain and bellyache all I want. These pieces of paper can be shredded later.

5. I check over what I wrote last and then start writing. Usually by this time I can see, feel, smell, and sometimes taste the story.

6. After an hour, I would come back from the story and do something around the house.

7. Sometimes I would go back to the story, but other times I would do other jobs that were piling up.

 

It’s been hard to get back into a daily routine where my writing is concerned. I have had two appointments a week (including blood work, doctor’s appointments, X-rays, physical therapy, etc. etc) for a few months. They become distractions after awhile even though I need to stay well. They also interrupt my writing.

So time to go back to one day at a time and one step at a time.

 

The first anniversary since his death

So he is gone.  I can say those words, roll them in my mouth, and loose them off my tongue without the stabbing through the center of my chest. He is gone.

I did a few things yesterday to remember him and to form new habits. I found a gun instructor. Otto was my range master. He took care of my guns, loaded them, and played spotter when I shot. I was a better shooter with him around. So I want to continue shooting.

Since we married twenty-two years ago, Otto and I used to go out to eat. For me that was just too much. I am still finding it hard to go out to eat as a single person. Before I met him, I used to go to restaurants by myself and watch the folks around me. I am an outsider in many respects. Plus people watching helps with my writing. Now, I am too self-conscious. I get nervous, watching people watch me.

So I ate at home, lit a candle to his picture, and talked to him like I used to do as we sat together in the restaurant. This might not become a thing. It was comforting this time around.

I have said before that the internet is a boon to introvert outsiders like myself. It is really hard to meet new people or to go to new places. To even find the shooting instructor, I had to stir up my courage for half a day before I drove to her place of business. She wasn’t there. I then had to stir up my courage for an hour, just to dial her number. I miss Otto. He was my courage.

My late-hubby told his co-worker that I was a warrior babe. That I had the courage of ten men. Well, I don’t. I just have the stubbornness. When I decide to do something, neither the nausea caused by nerves, or my introversion will stop me. I power through it. Sometimes it even becomes a great experience. Sometimes, not.

Yesterday, I survived my first anniversary alone.

The anniversary fast approaching

Out_house_useage_Another side of Otto– When this picture was taken we were taking his daughters around Carson City, Nevada to see the place. This old outhouse was next to a small museum.

I put this picture up to remind me that he had the Trickster side to him. Plus he loved to tell jokes–

When I was first dating him, he told me every blonde joke he could find. He went through some hard times, (foster child, Vietnam Vet to name a few), but he was able to think positive.

I have been talking to a few of his old friends and it reminded me of his irrepressible humor. I would prefer to laugh at his jokes than cry about his death. I am a gloomy type– (read some of my books and you’ll see) and he was the sun to my rain.

And for old times sake– an elephant joke:

Q: What do you call an elephant with a machine gun?
A: Sir.

And the anniversary fast approaching? We married on Feb 16, 1993.

Veteran’s day Pancake Breakfast

On Saturday a church near me held a Veteran’s day Pancake Breakfast for the veterans in the area. They had a nice flag ceremony and they also did a slide show to honor the veterans. I was surprised that my face was also there and my late-hubby’s face. I think I choked when I saw him. My brother had given one of the guys who put the slide show together some of his pictures.

It was a bitter-sweet occasion. I talked to a lady who said she regretted never going into the military. I told her my policy of “no regrets.” We make choices in our youth and young adulthood that make us the people we are today. If we like ourselves, we made the right choices. Every choice has an upside and downside. Also, if we don’t like ourselves then we find a way to change.

This attitude doesn’t make me wise. It does make me able to see a little farther into the future than others. So I need to look into my future which looks really brief right now. Plan for the next step of my life without the man who was my rudder. It is time to take control.

My health is not the best. I found out a few things that I suspected about my health last week, but no one had actually told me straight. I do like my new doctor. It does mean that I have to trust someone other than myself to tell me if I need to see my doctor.

I do have plans. At this time I want to thank my late-hubby for being my rudder during some very difficult times in my disease. Without him, I would have died. I have known this for many years and it was one of the things that really scared me when I realized that he was dying.

May he rest in peace. May I find happiness again. May I stay on course for the next part of my life.