The weather is changing

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Photo by Markus Spiske temporausch.com on Pexels.com

The weather is changing.

I walk around the apartment complex every morning around 6 a.m. with my small black dog. The morning temperature for the last few months have been in the late 80s, just at the point where my skin prickles from the sun’s rays.

This morning I felt the cool air brush against my shoulders. It was closer to 78, the temperature I like in my apartment.

I opened the doors and let in the fresh air.

Yesterday, I could feel my serotonin levels drop. I wanted to do something, anything, but I couldn’t concentrate. It was too hot to go outside and watch the grass grow.

I was too restless and then too tired to even do my housecleaning. I do need to vacuum. The dust gets trapped in the carpet if I don’t do that household chore regularly. I felt a change in the air. Even when I laughed it was forced.

I finally googled about foods that lifted serotonin levels. The two main foods that kept coming up in my search were turkey and eggs. I finally fried up a couple of eggs and buttered some toast for dinner. That feeling that I had forgotten to do something or that I needed to do something was gone.

There is something in me that yearns to walk away from routine. It wants to follow the wind and the changing weather. It wants and doesn’t understand that this body gets tired  too easily. That this body has limitations.

My body feels a change coming. I’m not prepared.

 

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I’m tired from the weekend

IMG_0109It’s been an interesting weekend as in the curse “may you have interesting times” interesting.

Foxy, my little dog, started coughing on Thursday afternoon. It sounded like croup– or as one of my friends pointed out like kennel cough. I took her to the Vet the next morning and she sounded okay to the vet. Still he gave me an antibiotic and a cough suppressant.

By Saturday and Sunday, she was coughing even more with the meds and she had a stomach ache. I learned from her that if a dog starts licking the carpet and eating grass that these symptoms point to a hurting stomach. I have a first aid book for dogs that has gotten me though a lot of problems with Foxy. She once got stung on the noise and her nose swelled twice its size.

The first two years I had her, she was stung on the nose, she had pancreatitis two times, and she stepped on a devil’s thorn (puncture vine seed)  that infected her paw. So you can tell that I needed that first aid book. Plus she went back and forth to Banfield hospital quite a few times.

So when I realized she had a hinky stomach, I immediately opened that book to stomach issues and vomiting. I was surprised that it suggested using Pepto Bismol for vomiting or an upset stomach. It even gave me how much I could use by dog weight.

I did use it and we were able to get through the weekend without her licking every fabric in the place. Also when she realized that the nasty tasting stuff helped her stomach, she was willing to take it. I had to put the stuff in my hand to get her to lick it off. The things I do for my little dog.

Anyway, this weekend took my mind off of Wednesday. I just found out that my kidneys are degrading again and it looks like dialysis is in my near future. I may have been worried about my dog, but she did keep my mind off of my own troubles.

I’m glad to say that she is coughing less today and she has more energy. In a few days, I’ll let her socialize again. For now I’m pleased to say that her sickness was not more serious.

Monday, Monday

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Free from Pixabay

I haven’t dared to turn on the TV this morning because I finally have a clear brain and don’t want it cluttered with angry political rhetoric. So instead of listening to the weather attached to “news,” I am listening to my writing music as my little dog, Foxy, sits at my feet.

In my last post I talked about having low blood pressure and as I changed my meds, my brain started to come back online.  At this point I am trying to break a few of my obsessive habits that formed when my mind wasn’t clear. One of those things is to sit in my over-stuffed rocking chair, and play games on my Kindle Fire. It wouldn’t be so bad if it was a break after my writing routines. But, after my walk in the morning, I try to catch my breath. My brain is still foggy so I just reach for the Kindle and then turn on the TV. Then that is the end of my day.

So today and maybe the next month, I am breaking the habit of turning on the TV first thing in the morning.

Until I was sick the first time, I saw myself as three separate parts– body, mind, and spirit. I thought of myself as my mind. Then the first time, I was on a serious chemo drug I found that when my body wasn’t well, then my mind wasn’t well. Logically I knew this, but in my heart– I was my mind. It took me many months after I was taken off that chemo and put on a gentler drug to recuperate. It was hard for me to admit that I would never be the same.

The meds that I take to keep my immune system and kidneys under control feel like a huge bear paw that holds my mind down. When low blood pressure is in the mix, I’m amazed that I remember to walk, talk and eat.

My conclusion is that there is no separation of mind, body, and spirit. If any of these components are sick, then the whole becomes sick.

The scary thing is– if I could see when my body was sick enough to affect my mind, then I could stop it. But being the one in the middle of it, I cannot. I knew something was wrong because I couldn’t remember words. They slipped away from me into the void. I started to become disconnected.

It was so subtle.

I am grateful for a doctor that saw something not quite right. My kidneys cannot operate well if my blood pressure is too low. In my experience, if my kidneys are not working properly, then I lose my ability to reason and think.

I am grateful that she brought it to my attention so that I could fix it.

Stress, illness, and other matters

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Image from Pixabay

Once again I am recovering from a bout of illness. This time it was pneumonia. I am finally starting to feel better after three courses of Levaquin and a four day stint in the hospital’s ICU.

It started out as a high fever and headache. It wasn’t how I usually get colds so I thought that if I kept hydrated and slept that I would get well quickly. I was mistaken.

I went to a follow up appointment with my primary care doctor a week after coming home from the hospital. She did scold me. Apparently if I have a temperature over 100, I should go straight to the ER. I have done that before and didn’t receive the treatment that I needed. So I am wary. I am pretty sure I will try to do it myself once again for a couple of days before I give in.

What got my doctor upset is that she lost a family member at the age of 40 to pneumonia. I really do understand her concerns. I don’t enjoy going to the ER and having some ER doctor tell me that I came to the ER too early. Or even worse being treated with condescension. At least this time the doctor, and he was a VA doctor by the way, saw the danger to my kidneys immediately. He started appropriate measures while I was waiting in the ER.

I haven’t had too many good things to say about hospitalists, but the one that treated me recently at the Las Vegas VA Medical Center was smart and made sure I had good treatment. The nurses were also good.

This stint in the hospital reminded me that I am always on the edge. The stress I have been feeling hasn’t helped me to stay healthy. I have had personal stress due to illness and money. Plus yesterday when the world went crazy about Charlottesville and the two crazy groups clashing and hurting each other, I felt the stress. Plus in many ways these ideas of white privilege and white supremacy attack me and mine personally.

If you look at my family, we are quite diverse. I have full siblings that look Hispanic. One of my brothers  was in Saudi Arabia with work and he could pass as one of them. There are Native Americans in my family. So when I am told that I have “privilege” just because of my skin color, I laugh– I admit it is a bitter laugh.

I grew up in a cabin, sixty miles from the nearest town. My privilege included “no running water,” and “no electricity.” I’ve lived in a small trailer with nine other people before the birth of my youngest brothers. I have put ditch water in barrels, put alum over the top to settle the mud and dirt, then use the water to wash clothes by hand.

I have worked in a huge garden. We would grow enough food to feed us for the entire winter. Our growing season was about three-four months. I canned food for weeks. The work was brutal. I would sometimes light a candle so I could see what I was doing in the dark of night as I finished up the last of the canning on the gas stove.

I had to go into the military so that I would have the GI bill so that I could finish college. I received no scholarships and no loans. Still through shear stubbornness and grit, I received a college degree in English literature when I was 38 years old.

“Check your privilege,” I hear all the time on the ‘net. No, you check your privilege.

I didn’t have a TV until I left home. When we did have a telephone, it was on a party line. I bought my first computer in the early nineties and received my first cell phone in 2005.

My life hasn’t been easy.

We live in the richest era of all. We can buy our food and clothing. It is easy to get a place to live. We have computers and entertainment that fill our days. No matter our color or place in life, we have more now than in any time in history.

I am grateful for not having to make all my clothes, grow and can all my food, and wash my clothes by hand. I am grateful that there is medication that can keep my diseases under control. Fifty years ago any one of my conditions would have killed me by now.

I want you to know that all of us are privileged to have what we have and to have the leisure time we have now. My challenge to you is to use it wisely. Quit the scuffling and name-calling. Take advantage of the opportunities.

And as Ellen DeGeneres says every day– “Be kind to others.”

So I haven’t had the energy

intheshadownewI see a rheumatologist every six months for my disease– Wegener’s Granulomatosis. I was first diagnosed with the disease in 2003 after a real fight, where I ended in the hospital for almost five weeks. The next year, while I was on IV Cytoxan and high dosages of prednisone was even worse. Some of my experiences are in this book that I wrote several years ago for other WG patients.

The good news is that C-ANCA is not showing up in my blood, meaning that the disease is quiet. As my rheumatologist said, “It is a very sneaky disease.” One of the things this disease did was damage both of my kidneys.

Recently, I started to have headaches and low energy. It was a gradual slide after the flu I had in February. Yesterday, I saw my nephrologist, who watches my kidney function. The creatinine levels spiked. I know that most of you do not know what that means. The kidneys have two functions: make water (or urine) and clean the blood. The high creatinine levels in my blood show that the kidneys are not filtering my blood well. But, you can survive on one kidney. I am surviving on less than that. When the creatinine levels spike, it can mean that my kidneys are going towards an inevitable decline.

So my inability to concentrate on my writing and the need to cuddle my dog, probably has been caused by the spike in creatinine levels.

The good news is that my levels did slide down in the last two weeks. The bad news is that I am taking more medication than ever as well as I have to be more conscious of my health.

So apologies again. I am one-third through the second draft of Dragon Boy. I hate excuses, but please forgive me.

When the lines in our head crash

Are we golems? Do we following the coding in our heads (or the genetic codes in our bodies) exactly? What happens when the lines crash in our heads and we have to rewrite?

Sarah Hoyt has compared us with Terry Pratchett’s golems in that we have certain lines in our heads and in our bodies that we “must not cross.” Plus when we go through extreme physical, mental, and/or spiritual trauma, we have the chance to rewrite our lines, whether for good or ill.

It is a rare person who doesn’t go through some trauma. But, I had a small epiphany– To completely change my life track in my twenties, I had to be broken and then I had to pick up the pieces and glue myself together. It wasn’t easy. I needed help. My life view completely changed. I knew that if I wanted any bit of happiness in my life, I would have to take charge of it. I would have to be so independent that I didn’t need anyone. Glad to say that when I met my late-hubby, he caught me before the “I don’t need anyone” had completely solidified. We needed each other, but we were a complete unit.

Now I am back under the blood sun and my lines need to be re-written again. I know that I am broken because I can feel where I cracked the first time. I went to one grief group and found that the break is pretty common with those folks who have lost a vital portion of their life. (I lost a vital portion from disease and now from losing him.)

Every one knows the five stages of grief. What they don’t tell you is that you cycle through it over and over – sometimes several times a day. And that when the grief becomes easier to bear, you wonder why you were left without him. Then comes the despair.

Words are inadequate to explain how there is a real hole in your being in the center of your chest, how the pain radiates out and taints your perspective, and how the blood sun sits in your head and asks you “why are you still here? Why haven’t you committed Sati?”

Otto wouldn’t leave until I promised him that I wouldn’t follow him. I am holding on with all ten fingers–scratched, bleeding, and fighting. Without that promise, I would not have my Foxy. Without that promise, I might have walked into the blood sun.

One of the lines in my head is that I am loyal and that I would follow him and stand with him forever. That line has been obliterated.

One of the lines in my head was that I would do anything to save him and heal him. That line is obliterated.

One line that is thin and fraying is that I am a protector. I keep that one by caring for Foxy. She has saved me when the blood sun’s voice was strong.

There are other lines that are so deep that they can’t be broken even though I have done my best to bend them. Always care for your family was beaten in my head. I was able to change the meaning of family to mean those that were made-family.

There are only two roads for me… Despair and die, or live and one day be happy. Foxy makes me happy.

 

 

Pain and writing don’t go together

First when my hubby was preparing for death, and I was denying it and fighting for his life, he told me that between Social Security and DFAS I would have enough for rent and utilities. I would have to come up with a way to get food and the other things I needed by writing.

Well, I am still in the process of Social Security. DFAS decided to rule against me. I am sure my hubby is spinning in his urn. They will probably be getting scrooged about now. The only group that came through and it is still not enough for my living expenses is Nevada State. May they have a glorious and restful Christmas.

The pain of losing him as my friend and support system has been overwhelming. You see, I have a lowered immune system because I take chemo to keep my disease, Wegener’s Granulomatosis, under control. It is a sneaky disease because it affects the medium to small blood vessels. In my case it affected the blood vessels to my kidneys causing them to fail. I have been living on Stage IV kidney disease for eleven years now. I have done everything right– stayed away from sick people or even normal people who get sick during flu season, keep washing my hands with purell and antibiotic soap, and taking my pills and vitamins. Still I am not in the hospital or hospice with staff cleaning my butt and driving me around. So why am I not working? I have a lowered immune system which means that even a healthy looking person can make me sick.

So this stressful situation with the loss of my mate has made it hard for me to write much on my novels. Yes, I have three in production, but I am stopping about halfway through. There are times when my brain just won’t do anything. It refuses– emotional pain turns into physical pain. I do have a lot of physical pain as well.

Before I got the memo that working was bad for my health, I tried to work two years after my diagnosis. I worked six months as a loan officer in a small office. My clients were over the phone. It took only that long before I started to show kidney failure– confusion, cramping in my legs and arms, vomiting, and overwhelming fatigue. My late-hubby got a job in Carson City, which saved my life. The rheumatologist put me immediately on cytoxan again because I was failing rapidly. He told me that if I worked that I would cut my life short. My grief tells me that I should have done it. But, my hubby was glad that I stayed home. He worried about me.

I am back in the situation with new doctors and having to justify why I can’t work in an office and talk to people on the phone. Besides the emotional pain, my joints hurt, my head hurts, my throat hurts, my ankle hurts and that is only because I have been around too many new people in the last three months.

It interferes with my writing. Interferes big time. Pain stops the creative process. Pain is now my companion.