Still Alive

I haven’t written on this blog for a long time. I originally put this site up to chronicle the problems and solutions for the disease. Also I found along the way that many of the medications caused problems as well.

Vasculitis Month - ebookI was put on a stomach pill to mitigate the effects of the oral chemo I had to take. Eventually when I started to have problems with stomach aches, I weaned off the pill and used drinkable aloe vera juice. Nowadays, I take a OTC pill after I have eaten anything too acidy. I also found that the nightshade vegetables caused some of my acid reflux (potatoes, tomatoes, eggplant, etc).

Another note: I found with my metabolism that when I quit eating the nightshade vegetables (or only ate them rarely), my cholesterol dropped over 50 points. This may only work for certain types of people and not everyone. I am only telling what worked for me. It was a surprise to me that when I got my GERD under control, I also dropped my cholesterol. I would never have put those two ideas together… ever.

In the Shadow of Death I chronicle the diagnosis and first medical treatments I endured. I was in the hospital for almost five weeks and had a tube that stuck out of my neck. This same tube was in the carotid artery. I heard later that this is a very delicate operation. The doctor who did it had me on the table with four nurses. My husband was holding my hand and we were not in a surgery space. One nurse had a sonogram and the doctor threaded the tube into my neck. They used one shot to numb the neck. My late-husband said afterwards that he almost fainted when he realized they were doing an operation on a table in the nephrology dialysis space. But I was dying then.

It is now thirteen years later. According to the doctors I am stabilized. My C-ANCA markers have completely disappeared and my kidneys are stabilized at Stage IV, which means that I am still walking and talking without having to be on dialysis.

There are two reasons that I am living today. One is that I am a stubborn cuss. I fought hard to stay alive when I felt myself slipping away. There were times when it would have been too easy to give up. Two is that my late-husband (died of cancer in 2014) gave me as much of his care and strength as was possible. Even when the medications made me nuts. I was told later that having hallucinations on prednisone is not that uncommon when you are on the medication for high dosages (100 mg) for an extended amount of time (6 months). I eventually was on prednisone on varying levels for ten years.

Some of the problems I have had with prednisone besides hallucinations are weaker muscles and bones. Other people get prednisone induced diabetes. Thankfully I missed that bullet.

I have fought hard to get some of my brain back. Both the chemo and prednisone have stopped my thinking processes. At one point I had to ask my late-husband if I was thinking straight. Brain fog from chemo and prednisone is a real thing. It helps if you have someone who you trust and who will help you to stay sane.

Some things I have used to bring my thinking back is reading and writing. Plus I used brain games. One thing that I have had a hard time getting back especially when I am tired are the numbers. I have a problem with math. I used to be so good at it too. You learn your limitations and you learn to work around them.

One thing hasn’t changed. I need a nap in the afternoon. From the first when I was only awake a couple of hours and slept the rest, I now get up at 6 a.m., nap around 2 p.m., and go to bed at 10 a.m. Rest is very important when you are ill and even when you are stabilized.

I still see a nephrologist, a rheumatologist, and a primary care doctor. After I see them, I will put the information here.

Thanks for wanting to read more about this disease and what it does to the individual. I used to be very physical i.e. walked two or three miles every other day, and lifted weights. Now I walk the dog two times a day and have pudge around the middle. So disease is a real life-style changer.



About Cyn Bagley

My life is a mixture of travel, jobs, and disease. You can find some of my novels on under the name Cyn Bagley.
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