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.

Okay, so what am I supposed to do?

The FDA issued a warning the other day about NSAIDs. They strengthened their earlier warnings on NSAIDs saying they can increase the risk of heart attacks or strokes. I've been on a prescription NSAID for about 4 years. Should I be concerned?

The official warning from the FDA says:

"Patients taking NSAIDs should seek medical attention immediately if they experience symptoms such as chest pain, shortness of breath or trouble breathing, weakness in one part or side of their body, or slurred speech."

 But I think anyone, whether they take NSAIDs or not, should seek medical attention if they experience those symptoms. Not helpful. Thanks.

The reason I am on NSAIDs for so long is my back. I take them for their anti-inflammatory properties to help with inflammation around my disobedient (pain causing) disks in my spine. I probably have inflammation in other areas as well.

I am not due to go back to my back pain doctor until September. But I will make a little note to ask about them. I am all for getting off any prescription I can. But in the meantime, I'll be on the look out for those symptoms....

Why people stop blogging?

This morning I actually took a look at the back end of my blog and the list of blogs I follow. There was probably over 100. I went through the list and cleared out a bunch of them who either I am no longer interested in or are no longer blogging.

Obviously there are two reasons people stop blogging - either they just decide to stop or they are no longer with us, unfortunately. The second group are the ones that sadden me - lost friends.

But the first group intrigues me. Why do they stop blogging? Most of the blogs I follow are health related blogs, many of them on breast or thyroid cancer, arthritis, fibromyalgia, or other lifelong ailments. So why do these people stop blogging? Its not like they are cured. But maybe they think they are. Or maybe they no longer have coping issues?

This is why I am intrigued. I think of blogging as a coping/venting tool for many. That's what it is for me, after 8+ years of blogging. My health is constantly evolving with new issues cropping up periodically (but I really wouldn't mind if I didn't have any more issues thank you) so I keep coping and keep blogging. Do these other former bloggers non longer feel the need?

The emotional impact of an ailment may dim over time and perhaps they get a false sense of security and assume they will be fine or are able to work past it and get on with their lives. Or maybe I am just really jealous that they are better and I am not? 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.