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.

Support Group Please!

I have been a long time fan of support groups, well only since my second cancer diagnosis. Before that, I thought they were for 'old people'. Now I do not consider myself old, but I have learned the benefits of discussing issues with your peers who understand how you feel.

I used to belong to a breast cancer support group which I attended for several years. It still meets monthly in the evenings but I don't do evening anything anymore.

I also used to attend a new patient breast cancer support group when I was first diagnosed and I still call the members friends and we still get together when we can and are in touch regularly.

Recently I have been trying a fibromyalgia support group. So far, my jury is still out. Yesterday was a decent meeting as the attendees actually participated. But one of the people who participated was trying it out and I am not sure she will return.

I have heard of a chronic illness support group that I might try. It really depends on what kinds of chronic illnesses are there and what the participants are like.

There is a post treatment breast cancer support group I might try in January. But it is my understanding that most of the attendees are much closer to the end of their treatment so I am not sure how that would work.

And there is a chronic pain support group which meets monthly that I attended once three years ago. I plan to attend again on this Friday. I'll have to see how that goes too.

Support groups are like dating - what a horrible analog but its true. You have to kiss a lot of frogs before you find the prince. I feel as part of taking better care of me, I would like to find a group of people where we can talk about issues with dealing with multiple medical issues. There are many people like me with medical issues but finding ones to talk to can be harder. I was offered the opportunity to start a knitting group at a cancer support center. That may be a solution.

I'll keep trying. But I need to get through moving first.

Spoon Theory (Or How Many Spoons Is That Worth To Me?)

Do you know about the spoon theory? No, its not something you learned in high school physics and since forgot. Its about life with a chronic illness. Christine Miserandino over at "But You Don't Look Sick".

This has come up in a couple other blogs recently and someone emailed me about it earlier this week. You can read the entire theory here but to summarize (poorly):

If you are healthy, you have an unlimited supply for spoons to get you through the day. As you start your day each task costs one spoon. This includes taking a shower, getting dressed, making breakfast, standing in line at the coffee shop, taking the stairs instead of the elevator up to your office, working straight out all morning, going to lunch, etc.  Each task is a spoon.

But if you have a chronic illness you start your day with a set supply of spoons. Probably about 12. If you do too much you will run out of spoons very early in the day. If you use up too many spoons, you might have fewer spoons the next day. Or if you run out of spoons, you need to spend the rest of the day resting/recovering.

This is my life now. Every day I need to evaluate what I am going to do for the day and figure out how to  use my spoons. I look at as 'how many spoons is that worth to me'. I have the list of what I want to do and what I need to do and evaluate my spoon count.

I had a very stressful, terrible day yesterday (thanks to bankers) and I didn't sleep well so my spoon count is bit low. I want to go to the gym, make four pies, and clean up for my brother's arrival with his four kids late this evening. I will be napping by 3pm.

I will rest for a bit longer this morning and attempt to go to the gym. Once I come home, I can make a pie and take a nap while it bakes. And repeat as needed.

Tomorrow is Thanksgiving which means lots of stuff to do, stretching out of spoons, and splitting what I want vs what I must do. I need to get as much rest as I can today. Each choice will require me to evaluate how many spoons each is worth to me.

Talking the talk if you haven't walked the walk

This eternally irks me - people who try to talk the talk and they haven't walked the walk. It is when anyone - your doctor, family member, friend, neighbor, cousin's hair dresser's dog walker's uncle - tries to tell you how you feel or should feel or be treated.

And just how did you get this knowledge if you haven't been in my shoes? This is when my friends try to tell me that I will feel better if I take a nap. Or someone else who thinks that I can be cured by something - a doctor appointment, procedure, nap, or something else. Or my former acupuncturist who thought my lymphedema would resolve itself.

I can't forget about the people who tell me about their family member's previous treatment for a similar ailment years ago and how its probably the best thing for me so I should change to another doctor who will give me that same dated protocol.

Let me just say to all of you: you have no idea of what I am going through. I know people who have one or two of my ailments and realize that they only deal with a portion of my life. I think they wonder how I cope.

Then I meet people with one or two of my ailments and/or a whole bunch of other ones and wonder how they cope. I would not attempt to give them any medical advice. Actually those people and I usually get to share tips such as - going to a specific support group, or compare diet modifications for symptom relief, or thoughts on disability insurance. Or we compare doctors and hospitals. But our treatment protocols can be compared but never recommended.

We all realize that we are very different people and our ailments require differing treatments. We are walking the walk so we can talk the talk. We know how to juggle our medications and side effects. We know how to manage fatigue and stress and temperature changes. We understand the significance of ailment progression. We know about long term relationships with doctors. We know what chronic means and how our ailments won't go away and we will continually face health challenges.

If you are not one of these people, please don't give me health advice.

Chronic Illness Truths

I met a woman named Julie on Sunday. I was giving away yarn from my stash that I will never use and she knits hats for homeless people. She also has health issues and understands what it is like to change your life to accommodate your ailments.

Anyway, Julie is writing an anthology of stories of people who are living with chronic illnesses and is looking for people to contribute their story by September 15, 2015. You can find out more on her Tumblr site here.

I find the idea of me writing about life with chronic illnesses intriguing. I have written a lot about life with cancer and my cancers are probably more treated as chronic and not terminal illnesses. They are also not acute illnesses meaning they won't go away. My cancers are symptomless, for now but they could always return, which just adds to the fun.

Life with a chronic illness which is symptomatic is very different than one that doesn't cause a lot of pain. My life with degenerating disks started to cause me some pain in my back and hips. The my life with RA and fibromyalgia is loads more fun. I have pain in many more places and it has changed my ability to work more hours and my ability to get a good night's sleep, walk any distances, stand for more than a few minutes, and all sorts of basic things in life.

I think I will write something for Julie's anthology. If any of you feel the need, check her site and write something yourself.