In the know

If you are perpetually sick/ill, you are in the know on how we feel. Someone came up with a list of 20 items but a few stuck out for me.

• You aren't quite sure what it means to feel "100%" because you're usually hovering at a solid 80% on a good day.
• Sometimes doing even the simplest of tasks feels like a five hour workout. Can I nap yet?
• By some miracle if you are actually not sick, you usually overexert yourself so much that you'll be sick again in a matter of days.
• Your immune system feels like its one weekend away from collapsing completely.
• Naps become more important part of your day.
• "You don't look sick to me". No, but my kidneys feel like they're failing so there's that.
• When you finally feel healthy again, it's an emotional experience for you. 

I'm not sure I'll ever hit that last one again but occasionally I can sit still and feel no aches, pains, or anything else for about 30 seconds.... Until I move and then it all starts up again.

And no, if you  haven't walked the walk, you can't tell me how I feel.

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.

We aren't just our ailments

So I have a breast cancer blog because I have had breast cancer. I blog daily but not necessarily about breast cancer. Even when I first started blogging, it wasn't all about breast cancer. Sometimes it was about stupid doctors, or people lost in the parking garage, or other things.

Now its probably less about breast cancer and more about other things. Why? Because I am not just about breast cancer. I am about a bunch of other ailments and a lot of other things. I am a college graduate who works in both marketing and IT. I design and manage websites. I do catalog layout and design.I am happily married and we have two new cats who drive us crazy. And I go to the damn doctor too much.

I think all of us unhealthy people have a tendency to be defined by their ailments. I mean we might blog about them, or go to the doctor for them, or take a day (or ten) off work for them. But we are more than them.

We are men and women, tall and short, many different sizes and colors and religions and believes. We live in all parts of the world. The only thing we do have in common is we have an ailment.

We also do not want to answer questions about our health daily. I have a friend who asks me, every time I talk to her, how I am feeling. This is new since my second cancer but don't ask me in that tone, please. (You know what I mean.)

We are so much more than our ailments. Please let us be all of ourselves, not just our ailments.

Dr Google, Dr Oz, and other bad resources

I often tell people to step away from Dr Google. But sometimes he sucks you in and you can't help it. Then there is Dr Oz who will be happy to get you to buy green coffee beans or something that someone supposedly believes will cure cancer. Well maybe Dr Oz isn't that bad but I think he's smarmy (definition: excessively or unctuously flattering, ingratiating, servile, etc.)

Finally we have those online symptom checkers to help us figure out what's wrong with us instead of going to the doctor. But they are usually wrong as well.  I admit to using online symptom checkers to see if I can figure out what is wrong with me. But since I have so many other things wrong with me, I usually ignore them too.

Now new research shows how bad the symptom checkers can be. There are many good health websites, such as WebMD, maybe even your hospital. But the symptom checkers where they try to diagnose what you have when you select your symptoms, they are not so good. They aren't so great at figuring out what is wrong with you. And they don't always send you to the doctor when you should go and sometimes send you to the doctor unnecessarily. Use your common sense instead. Or if you aren't sure on your common sense, phone a friend.

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.