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.


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Abnormally normal

Last week I went to my semi-annual appointment with my Rheumatologist. I have been going to him for over eight years now. So his first words were that my labs were abnormally normal for me. My creatinine level was 1.6. So yes, the lowest level in over ten years. My protein levels were around +2. I vary around 0-+2. And so forth with the rest of the labs.

The one problem I had was with edema. Since my kidneys are compromised with this disease, I don’t “make water” like I should. I have used a diuretic after I had a glitch in the hospital (my ankles were twice their size from water). I don’t like using the diuretic because it gives me cramps– takes much of the elements out of my muscles.

I am using a natural diuretic (dandelion root) and it seems to be helping. I am not having pressure in my legs as much. The veins and nerves in my feet aren’t hurting. Plus the problem I had been having where my heart began to race has settled. I guess edema is worse problem than I thought.

Well, if it isn’t one thing it is another.

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Dry Mouth Treatments

Because of my dry mouth and wanting to keep a few of my teeth, I decided to try some Xylitol mints that are used for keeping the mouth wet.

In my case it was a big mistake, I seem to have a reaction to sugar alcohol and particularly to xylitol. It has given me a sour stomach and activated my GERD. I had to take some Prevacid. I have been burping as well.

It is a little better today, but it looks like I will not be using that treatment to keep my mouth wet. Dry mouth is a serious condition and I need to get it under control or I will lose the rest of my teeth.

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When you have to see a dentist

So I had a dental appointment on Wednesday. I usually hate to go not because I’m treated badly, but because I usually have either cavities or another tooth ready to give up the ghost. This time I had both.

Apparently from my prolonged use of medications (prednisone and chemo) I have a condition called “dry mouth.” This condition allows the bacteria to flourish much quicker than it would if a person had a normal mouth.

So I had two cavities and one molar on its way. It really needs a crown. Now comes the special circumstances and you thought that the special circumstances were the disease and medications. Oh no — I have another genetic problem.

Small mouth and big teeth. When the dentist put in the last crown, I could hardly keep my mouth open. My jaw cracks now every time I open it. I had an impression done of my teeth when I lost one of my bottom molars (same reason) and they had to use a child’s mold. When someone (anyone, even a toothbrush) is at that back molar I give up my stomach contents.

It gives me a problem. I can wait for 6 months to a year and have the tooth pulled or I can try for a crown. As you probably can guess the prices are in favor of the pull. Plus that would be the third tooth on the same side of my mouth. I wouldn’t be able to chew there at all.

I would have a zig zag pattern on that side of the mouth. I really would like to save the tooth. There is another problem. Even if the dentist successfully crowns that tooth, I may lose it in two years or more.

Dang– I just don’t know what to do.

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Update on my health

So far I have been in good health except for the propensity for getting various infections. The beginning of this year, I did something to my hip and couldn’t walk for a week. After resting, and then going to a chiropractor, I started walking a few minutes a day. This was around March.

I started to feel better and then began the infections. Once I got that under control, we started to have a smoke plume from the Yosemite Rim Fire. It was pretty hard on my lungs, sinuses, and eyes.

Thankfully the smoke and haze has gotten better in the last two days and I am starting to feel better again.

I found that I am having some rare side-effects from the generic Cellcept. Some of these include itching, UTIs, and other infections. My joints have been sore as well.

As for the disease, Wegener’s Granulomatosis, the meds have kept it under control. I have had some drug interactions between the Cellcept and my blood pressure meds so I am using niacin to keep my blood pressure under control So far, so good in that area.

So this is the State of the Union of my health. I am completely off the prednisone now, yeah. And, hopefully I can keep in good health for the next year. I will keep giving updates as well as any information that I find about Vasculitis disease and Vasculitis treatments.

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Can you read this drug label?

How confident are you that you take prescription drugs correctly? The instructions on the bottle’s label may not seem to be hard to follow, but more than 500,000 Americans misinterpret them every year.

We wanted to do a “spot check” and see for ourselves how different drug labels, bottle warnings, and consumer drug information leaflets compared with one another. So Consumer Reports Health staffers filled prescriptions for 5 milligrams of warfarin at five chain pharmacies near our offices in Yonkers, N.Y.: Costco, CVS, Target, Walgreens, and Walmart. The drug warfarin, also known by the brand-name Coumadin, is a commonly used generic blood thinner, which can cause dangerous bleeding if taken incorrectly.

The rest of the article is here.

What I have to say:

This particular problem could be dangerous when you have to take strong medications to keep your immune system under control. If you can’t read the directions, make sure you talk to the pharmacist (or call the doctor’s office.)

Also check your meds before you take them. Make sure the labels are correct and that you are taking the right amounts of the meds. If there is anything strange, take it back to your pharmacy. Even though the meds are prescribed, they are dangerous if taken in the wrong way or the wrong amounts.

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Rhino-sinusitis: Causes and medical treatment

Mr James W Fairley BSc MBBS FRCS MS
Consultant ENT Surgeon

What is rhino-sinusitis?

Rhino-sinusitis is the combination of rhinitis and sinusitis.

  • Rhinitis (Rye-NIGHT-iss) is inflammation of the lining of the nose.
  • Sinusitis is inflammation of the sinuses.

As part of the same air passages, and lined by the same mucous membrane, the nose and sinuses tend to be affected by the same problems. Rhinitis is commoner than sinusitis, and causes similar symptoms. Most cases of sinusitis start off as rhinitis, so we usually get rhinosinusitis rather than pure sinusitis. Nearly all cases of sinusitis are in fact rhinosinusitis.

The rest of the article is here.

What I have to say: Rhino-sinusitis is a common indicator of Wegener’s Granulomatosis. When I was first being treated, my nose would drip with a thin secretion. Since inflammation is a part of Vasculitis, and inflammation can cause rhino-sinusitis, it seems to go hand in hand with our disease. This article has some really useful information to keep you nose and sinuses in good shape.


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