What I want for Christmas

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What I want for Christmas is ….soft foods?

Yea, sorry I missed my Wednesday’s poets post this week, I was in the hospital overnight connected to this machine that beeped and dispensed saline and antibiotics.

I didn’t even expect to find myself in the hospital this week. I had had some severe stomach pains over the weekend so I sent a note on one of those patient portals to my doctor.

Her response after reading my epistle was very short and sweet. “Go to the VA ER and ask for a  CT scan. ”

One of the reasons I talk about my medical history is that I am in a group of people who have a rare disease called “Wegener’s Granulomatosis, which was changed to Polyangiitis with Granulomatosis.” I just use the acronym WG/GPA.

A lot of my problems started when I was diagnosed with that autoimmune disease in 2003, which will be sixteen years in the first part of January. So since my diagnosis I’ve discovered that the body can fail in the most amazing ways.

So I went to the VA ER, they took blood and they did a CT scan. I thought they would just give me an antibiotic and send me home. No, they told me I had a confirmed case of diverticulitis and that I was staying overnight.

Pretty much I have lived in a flapping hospital gown with a black bra and white panties. I say again, I wasn’t expecting to stay there.

I was only allowed broth for dinner. Then I was given the paperwork. One of the nurses told me that I seemed pretty smart and on the ball. After hearing some of the delirium in the hallways of certain other sick folks, I guess that was a compliment. Anyway, she told me that I probably already knew what I could eat and what I couldn’t eat. Yep, she was right.

But if I needed to talk to a dietitian, then she would put in a consult. Since I was going home the next day– oh, yea I am determined. I said no. I did tell her I would call my dietitian when I got home– the one who knew my other diet requirements.

So yea, it is clear broth or soft foods for the next month. I’m still reeling from the antibiotics and had to take a few home for popping.

One of my nurses was kind of concerned that I was going home too soon. It wasn’t soon enough after a night of no sleep and without my little dog. It’s too noisy to sleep in a hospital.

And, I did my thing. Instead of blowing into that thingie-ma-bopper that keeps you safe from pneumonia, I asked if I could walk instead. When I got the green light, I packed up my pole that was dispensing antibiotic, and walked the hallways in my hospital ward, my hospital gown flapping as I probably showed my little world the little black bra and white panties.

I did hear one of the nurses say to another, “she is going fast.” I guess someone on those antibiotics rarely are able to even roll out of the hospital bed.

So all I get for Christmas this year is soft food and Foxy.


Blue dogs and pink rabbits

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Early this morning I woke up with a headache.

When I get one of these, it heralds a change in atmospheric pressure. In short my head is telling me that we are moving from fall into winter weather.

I could always predict the weather. I’m one of those lucky ones (I’m snarc’ing right now) who could smell rain or feel the changes in the air. I guess I have always been hypersensitive to the natural world. It can be good or bad. In my case as I got older with more physical problems, these warnings came as migraines.

Unless you’ve had a migraine where your head is pounding and your eyes are hurting from the light and you want to vomit everything in your stomach even the bile, I can’t explain what it feels like to have a full-blown migraine. The only relief is to lie quietly with a cold cloth over my head in full darkness.

I’d get one every big change in weather and sometimes during the allergy seasons. After talking about it and refusing botox and other medications that are used for migraines, my doctor had a bright idea. There were studies that showed that people who were susceptible to migraines might be low in B vitamins– particularly B-2.

So I started taking a B-2 vitamin every day. I can feel it when I forget. There is a headache that sits in the back of my brain. It feels like a caffeine headache.

So today, I should have a full-blown migraine because I can feel the atmosphere press against my head. Yes, I do have a headache– but I can function. I’m not wrung out from vomiting into the toilet. I’m not lying down with a cold cloth pressed to my head.

I think this is a little miracle.

Relief and chugging along

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It was a huge relief yesterday when the nephrologist decided that I had gotten a slight bit better and was firmly in Stage IV kidney disease.

If I slide into Stage V then it is time for dialysis. So I dodged the dialysis train again.

It looks like it was dehydration that got me this summer. When I started to drink more, my kidneys started to work better again. It was a dry summer. I do have a limit on how much liquid I can take in because of the insufficient kidney function. So we learned, both the doctor and I, that I need more water when it is very hot and very dry.

On my writing, I finished “Hero of Corsindor” and it is now at the beta readers. Once I get it back and do edits, I will start the publishing part of the book. For now I am going over what I have already written on “Unlicensed Sorceress.” After my writing session with Dean W. Smith (he does writing classes on line for any writer who wants to write great fiction), I realized that I was shorting the descriptions of places and people.

So everything I wrote on “Unlicensed Sorceress” needs some more description, better words, etc. etc. I’ve got a goal to write every day. Sometimes when there is a day like yesterday, I am too tired to do it. I’ve learned that driving to an appointment (30 to 45 minutes), then listening to the doctor can wear me out faster than when I work at home.

Plus the relief– I was a rag doll by the time I got home yesterday.

So I am back to writing, listening to music, cleaning my house, and cuddling the dog.

Deadlines and coloring outside the lines

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When I sit here and type about my last few days, it sounds like whining in my ears. I finally took Foxy, chihuahua-terrier mix, to the vet for her rabies and parvo shot. She is slumping around, which tells me that she’s not feel good.

I’ve been slumping around too. My heartbeat has been going wild lately. I’m pretty sure my thyroid medication is too high. So I’m doing a lot of quiet music and meditation, which means that my writing has suffered the last few days. I’ll be talking to a doctor on Monday about reducing the meds or even changing them. We’ll see.

I’m still on track with my deadline though. It looks like “Hero of Corsindor” has about 10,000 words to go. I wrote this one several years ago, but this year I wanted to do a good edit and sew up any holes in the plot. There were several. It was the first book I had written and my writing has changed a lot since then.

It’s been interesting to see the changes. When I first wrote this book I was excited that I had finally finished a full sized novel. The first time was the hardest in my opinion because I didn’t know I could do it.

Plus I take some online classes every few years to keep learning. This writing business takes a lot of my time and attention. I am always learning new things about story-telling. Yes, talent is nice to have if you want to tell stories, but skills are even more important to develop.

To be honest, I’m not good at coloring in the lines. It could be I’m just not good at seeing the things other people see. Other people can’t see what I can see so it is a trade-off.

I started writing for myself. I just couldn’t find what I wanted to read. Now I’m wondering if others like what I have written. So when someone tells me they are having fun with some character, something inside my chest releases.

I think I feel happy.



The weather is changing

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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.


Always be prepared

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My grandfather was a scout and won a lifetime award from the Boy Scouts. My father was an Eagle scout and all four of my brothers worked hard for that same honor.

You might be thinking that this is about the Boy Scouts and how they have changed over the years. You would be wrong.

This is about how I absorbed the honor in the code because I was a girl surrounded by Boy Scouts. I absorbed two things– be prepared for anything and honor. It was the reason I finally enlisted into the US Navy when I was 27 years old.

My problem is that you cannot be prepared for everything. It was a hard lesson to learn. Being stalwart is all good. But, when the winds blow and your life is uprooted, then it is better to be able to bend like tall grass.

Oaks crack in very strong winds.

So I am in a new strong wind. Even though I knew for years that eventually I would get to the point where my kidneys would fail again.

Let me tell you about last time. I was going Grad school to get my MA in Adult Education. I was halfway through the program and doing well– well enough that I was getting job offers– when my kidneys failed. I can list all the symptoms and if you haven’t had a disease of an organ failure, you won’t be able to understand the devastation.

I will try. I had just finished a class and was writing the last part of my assignment, when I began spewing liquids at both ends of my body. I thought it was the flu at first. All I had to do was to be steadfast and I would survive it. Everything I ate started to come up. I could time it. I would drink Gatorade and in four hours I would vomiting the red stuff into the toilet.

I lost weight– about ten pounds in less than two days. When you lose this much weight and when you can’t get nourishment from food, then the brain goes. My entire life was focused on sleeping and vomiting.

I don’t tell you these things to gross you out. I’m making a point. No matter what dreams and goals I had had up to that point, they were gone. Even when I was diagnosed and put on meds that saved my life, my cognitive function never fully came back.

I could cry at what I had lost or I could bend and look for something else to do.

I have to admit that the first two years as I took the meds and lay in bed, barely able to move, that I did crack. When I started to feel well enough, my mind was still under the influence of prednisone, which made me crazier than a fruit loop.

This wasn’t the only time that I have been hit so hard that I didn’t know if I would come back. I have to remind myself that this glitch is another setback. I can survive it.

Dreams are good. They let us go farther than without them. But– when that wind blows in your life bend with it. Instead of a tree, you might be a seed being sent to a new life.

Changes are always drastic and always chaotic.


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.