More wonderful medical news

Of course, I get all the fun stuff. I have both rheumatoid arthritis and fibromyalgia. It never ceases to amaze me that some people do not know what either are. Yes, Virginia there are disgustingly healthy people out there who do not know about yucky unhealthy stuff.

So it overjoys me to read new research about my ailments. Especially when I find research that says the really lucky people who have both RA and fibro, have many more problems with RA than people without fibro.

One article is titled: Fibromyalgia Symptoms May Mimic High Disease Activity in Patients With Rheumatoid Arthritis. That title sort of says it all doesn't it? So even if I don't really have high disease activity, I will just feel like I do.

This article is from Egypt and is titled: The Impact of fibromyalgia on disease assessment in rheumatoid arthritis. I has some lovely charts and tables that compile the list of issues.

Table 2. Somatic manifestations of studied rheumatoid arthritis patients.

Somatic manifestations percentage (%)	Patients		P value
	RAF (25)	RA (25)
Widespread pain	100	28	less than 0.001
Sleep disturbance	68	32	0.011
Fatigue	92	52	0.002
Morning stiffness	56	36	0.156
Headache	56	24	0.021
Depression	88	40	less than 0.001
Anxiety	72	40	less than 0.001
Parasthesia	76	32	0.002
Cognitive symptoms	56	16	0.003
Dysmenorrhea	20	20	1
Irritable bowel syndrome	16	4	0.157

RAF: rheumatoid arthritis with concomitant fibromyalgia, RA: rheumatoid arthritis.

When I was diagnosed with both RA and fibro, my doctor told me I probably would not be able to tell which ailment caused which pain. Sometimes I can but sometimes I can't. And sometimes I just don't care.

But now that I know fibro makes my RA feel worse, I'm not going to suck it up. I think I should switch to chronic whininess. I think chronic whininess outweighs chronic pain. Some research news inspires whininess.

Deep thoughts in the middle of the night

Insomnia, partly caused by fibromyalgia which gives me fatigue and insomnia, causes deep thoughts in the middle of the night. Sometimes I actually remember these thoughts to ponder them further.

So what occurred to me last night was that my most significant health issues to me is no longer cancer. Cancer has definitely settled back to lurk but no longer dominates my life. I get to go to extra doctors, because of my medical history, we need to be sure, but cancer is not the focus. This is  nice mind set. I don't have the need to dwell on it in the middle of the night. Nor do I feel the need to dwell on it. Cancer is not worthy of any stress.

Back in July I saw my medical oncologist for my annual follow up. She took me off Femara after five years. The thought process was that Femara has not been shown to have additional benefit after five years and it could be contributing to my joint pains. But she said I could restart it if I felt stressed about potential recurrence. I didn't think that would be a problem and I am not stressed. And I might  have less joint pains than before.

Also my thyroid cancer has not been problematic. Its just there and I have extra blood work because of it. But its not a stressor.

However my rheumatoid and fibromyalgia tend to rule my life. If I bend wrong or spend too long out and about, they remind me they are there. Or I can not be doing anything and they tell me they rule my body. And fibro keeps me up at night.

Something is going to do me in at some point but I am not going to worry about it. Cancer doesn't deserve to stress me out. It doesn't deserve anything. Its just a piece of crap anyway. I am not going to waste my life worrying about cancer any more than I already have.

Maybe I'll get a good night's sleep tonight.

World Arthritis Day

I missed it. It was yesterday, October 12. Obviously it must have been  hidden behind a cloud of pinkification.

Let me be clear I didn't even know there was a World Arthritis Day. And according to their website, there were only four events in the US and six in North America. The rest were in Europe and Middle East.

I think if there was one giant calendar of all the awareness days/months, it would probably contain a million event. The problem with these 'awareness' events is that there are just so many. Do we really even need them?

I like the idea behind them - to raise the awareness for an illness or ailment. And to help fund research for better treatment options or cures. But when every day is a different awareness day they become to blur together and lose their emphasis.

With my list of ailments and interests, I have too many to choose from and pretty much ignore them all. I do voluntarily attend specific events which focus on fundraising or awareness for different ailments but do not choose to make a big deal out of any one.

This is a case where less is more. If there were many fewer, I would probably be able to find a couple that fit my interests.

More 'wonderful' news for me

I have to stop reading the news, damn it. I have tried to wean myself off the news, particularly medical news, Then I stop feeling educated and start feeling like a stupid patient. And if I stopped reading all news I could skip all elections and their related stupidity and inanity. But I haven't been able to stop, so I keep reading medical news and sometimes I find all sorts of stuff I may or may not want to know.

So today I have all sorts of  'great' news' I am not sure I wanted to know, well some I do like and some I don't.

First let's start off with the news that in view of huge increase in thyroid cancer diagnoses, new recommendations are that small papillary thyroid cancers be left alone and not treated.

"An increase in thyroid cancer diagnoses has led to unnecessary biopsies and surgeries. New guidelines from the American Thyroid Association endorse close observation as a possible treatment option for many small papillary thyroid tumors rather than surgery. The guidelines also caution against biopsies for many small tumors and say that when surgery is required, partial — not total — removal of the thyroid should be considered."

After a total thyroidectomy, the usual treatment for any thyroid cancer, the patient is left without a thyroid and requires lifetime follow up and medication. Thyroid cancer is slow growing and some unlikely to ever cause problems for the patient. This isn't that bad and it does show more progress in thyroid cancer treatment - instead of the usual 'one size fits all' approach.

Second, patients who are diagnosed with thyroid cancer and breast cancer are tested for Cowden's syndrome, a genetic trait which is characterized by the diagnosis of several cancers.

"Approximately 1 in 200,000 people are affected by Cowden disease and those who have the disorder have about an 85% lifetime risk for breast cancer and a 35% lifetime risk for epithelial thyroid cancer. Cowden disease is also associated with elevated risks for uterine, kidney and colon cancers."

I was tested for Cowdens and told I did not have it. And was told that I could have another mutation for which a gene had not yet been discovered. Now "Researchers have discovered a new gene, SEC23B, associated with Cowden disease, an inherited disorder that increases risk for thyroid, breast, endometrial and other cancers." This is real progress in that more than one gene mutation can cause similar problems.

So maybe there is a gene for me which would explain my unhealthy body. A note about gene mutations is that they do not have to be inherited, they can mutate just for you.

I saved the best for last. Rheumatoid arthritis has been shown to shorten your lifespan. Yippee yahoo. I needed to know that.

"Rheumatoid arthritis may raise the risk of early death by as much as 40 percent, with heart and respiratory problems the most common contributors to a shortened life span, a new study suggests."

And did you  know that some RA medications can cause respiratory problems? Since my diagnosis I am back to yearly chest x-rays.

See I really need to stop reading medical news. Its bad for my mental state, whatver that may be.

How RA (and other ailments) change your feet

In addition to the pain and fatigue that came into my life with my degenerating disks in my back, RA, and fibromyalgia, my foot wear has taken a big hit.

I have never been a fan of high heels, well not since my 20's and 30's when I was going out dancing regularly. My favorite work shoes were low to  moderate heels for years. I had no real problems with my feet.

Since my RA diagnosis, my feet are a big part of my conversations with my rheumatologist. RA frequently affects the small joints in your hands and feet at first. I can tell you my RA did start that way. I get painful hands and feet. Also, I have to use toe separators on my right foot to stop my toes from curling under each other.

I don't shop for shoes by looks or heel height. My shoe choices are no longer low or medium heels. I get to wear flats. I get to wear supportive flats with a big toe box - meaning no points. I get to put expensive inserts ($50/pair) in my shoes that aren't supportive enough. And my feet are now wider and 1/2 size longer.

Shoe brands that I now look for are Merrell's and Clark's. Naturalizer shoes, a good brand of shoes with structure, no longer are an acceptable choice. While they are supportive they do not provide enough support.

I got rid of most of the shoes in my closet as a result of these changes. Yesterday I found I wasn't alone with this. Lisa wrote about this in her blog as well. (I met Lisa a few years before my RA diagnosis and have been reading her blog for a while now.)

Back to my feet. Foot pain sucks. Because your feet are involved in things like walking and standing. Its hard to do much without using your feet. And sometimes they hurt when I am sitting or lying down.

You never think about some body parts until they stop cooperating with the rest of you. I don't miss my gall bladder much now that I no longer have it. My gall stones made things difficult for a while. I also don't miss my left ovary and uterus since they have been gone for more than ten years.

But my hands and feet are a real problem. They are too important to remove. I am stuck with them as they are and hope they don't get too much worse. And wear ugly supportive shoes.

A long sad day

Yesterday I drove my parents to the memorial service for a neighbor from my childhood. It was a 330 mile round trip. By the time I got home it was nearly 9pm and 12 hours from when I left the house. I don't travel so well these days so I made a point of getting a lot of sleep last night.

Susan died last fall from breast cancer, six weeks after her diagnosis. She had ignored pain in her ribs last spring because she thought she had strained something. She was a farmer and very active. Also her tumor was so far back and so close to  her ribs, it may not have shown up on a mammogram. It wasn't until she started feeling many more symptoms did she end up in the emergency room and got some very bad news.

Her mother was also diagnosed with early stage breast cancer in early 2014. So in speaking with her two remaining sisters, I made a point of telling them both they should consider themselves high risk for breast cancer. They agreed and said they had already spoken to their doctors about it.

It was a nice memorial service and internment of her ashes followed by a family gathering at their house on the ocean. I got to catch up with both her sisters, mother, and another friend from 4-H back in the 1960s.

I also met a woman who has the same rheumatologist as me. Her rheumatoid was more advanced than mine and she has had six joints replaced - both ankles, knee, and hips. I can't remember them all. She has refused to go on to a biologic and has been on methotrexate for 14 years. She was in a wheelchair because of her recent surgeries. I never want to be in a wheel chair. Another sad reminder of the implications of my ailments.

Between a memorial service, a long drive, and seeing the implications of rheumatoid. It had an emotional as well as a physical toll. I need a day off today but have too much to do.

I'm making a list

I have to make a list because I have no brains. My husband swears that my life is wallpapered with lists.

In early May, I saw my rheumatologist with the goal of doing something about methotrexate. While it has been good at controlling my rheumatoid, it has suppressed my immune system so that I would get a cold that would last 1-2 weeks every two months. I can't be out of commission that often from a stupid cold.

We made a deal where I would wean down my methotrexate for two months and increase my sulfasalazine and wait and see how I do. Well its two months and I go back to see her to talk options. I am not sure this combination has been that good. I have been having a lot of problems with my RA. Damn.

But I am making a list of issues and what to ask about options. Its a long list of issues and I am not sure how many options there are. Double damn.

A little humor this morning.

I am going through a phase where my butt is dragging around because of my stupid RA and adjusting medication levels. I wasn't sure if I would be up for going to work yesterday or today. I did make it through yesterday morning and since I am up, I will go to work for a bit, probably just the morning again.

I need humor to make it through the day.

And I have to ask the question, which would be worse: being allergic to a favorite food or item or having cancer? At this point I am actually leaning toward the allergy thing. If I became allergic to red wine right now, that would really suck.

My life

Apparently I need more sleep than I thought. This may be why I had a bad week last week.  I was cranky. I was tired. My RA was bothering me. Work was stressful. And made me cranky. I don't think I got through a full work out at the gym all week.

I was very tired by Friday night. Then Saturday I did a lot of nothing (well I went to a few garage sales) and then took a 3.5 hour nap. Then I went to bed at 10 and slept for 8 hours. I could take another nap today. I probably will.

I will work harder at keeping up on sleep this week. I might even fit in taking a few naps.

This is my life. I have to fit in naps. I have to take it easy. Regularly. I have to have naps. I have to sit around with my feet up.

This will take some thought

The other day I had a really bad idea and got on the scale. We will just say it didn't make me feel happy. In fact, I was rather upset. I have no idea why the scale went so much in the wrong direction. We will just say it incentivized me to take a look at my eating habits and figure out some strategies.

So I really need to lose weight. I get it. I'm working on it. Or so I thought.

And then I read this article: Weight Loss Predicts Mortality in Rheumatoid Arthritis: Weight loss is a strong predictor of mortality in patients with rheumatoid arthritis, according to a study published online June 26 in Arthritis & Rheumatology.

Or basically the more you lose weight when you have arthritis, the more you increase your risk of mortality with RA. That isn't really helpful news for me at all. My inner size 8 is calling me. I'll have to think about this one for a while.

I am sure any doctor will tell me that I should lose weight for a variety of reasons. All doctors are skinny these days. Skinny people are healthier (usually). I am not a healthy person and now this is telling me I shouldn't lose weight because it will increase my mortality chances. Great.

This isn't really good news. Or maybe I really need to stop reading the latest medical news.