It is complicated

When diagnosed with a new ailment, I try to educate myself on what it is, what to expect, and how it works as much as I can. I don't go to medical school or anything but I do a lot of reading,  listening and asking questions.

I think I feel more comfortable with ailments when I understand them and can comprehend how they are affecting my body and my well being. Its helpful to me to know what is common vs what is unexpected and requires further attention.

At my RA diagnosis, I thought I knew a fair amount about it because my mother has had it for decades. But apparently I did not. It has been a learning curve. I finally thought, 8 months after diagnosis, that I was getting some where.

Then yesterday a friend sent me a link to a series of two articles in the New York Times which are questions answered by a rheumatologist on RA and its treatment. Then I found out how much more I didn't know. I read the comments at the end and found there is still even more I need to know about.

You can call me slow but I probably have decades where I can continue to learn about it even more.

If you want to educate your self on RA, here are parts one and two.

Happy RA Awareness day, a day late

Yesterday was RA Awareness Day, the first one, so we went out to dinner with my parents because my mother wanted to celebrate. She has had RA for over 20 years. We didn't know if we were supposed to wear a special color or not.

It was also Ground Hog Day and Punxatawney Phil did not see his shadow. This lead to some discussion. Does it mean that winter is over as we know it for the year? Or does it mean it will fade away? Or do we really care because he is not accurate anyway?

RA Awareness Day did make me aware that I need to learn more about my new ailments. There is a lot I don't understand. I was attempting to reading this announcement on an important new development in the diagnosis of RA and it reinforced the thought I really do not know that much about it. Its about antibodies in carbamylated proteins (which makes me think of caramelized onions) if you really need to know.

My goal now, or another one of my goals, is to learn more about my new ailments before the next Rheumatoid Awareness Day. I have a year. There is hope.

Its a whole new world out there

So you get an ailment and, in the very 21st century way of doing things, you start a blog. You meet all kinds of people (in person and virtually), get and give support, and learn a lot about your ailment and resources available for you. You start following other blogs, sign up for communities and listservs, you get people to communicate with world wide.

Its amazing how much information and support is out there - its truly a wonderful thing. It can be a full time job to keep up on a single ailment.

But I started behind the curve as I had two ailments - two cancers - thyroid and breast to blog about. I have mostly focused on breast cancer but I have let the thyroid cancer come into play as well.

But now I have more ailments - fibromyalgia and rheumatoid - to cope with and blog about. I have followed more blogs, joined more online communities and listservs, my inbox has its own little folders to help manage the vast quantity of emails I receive - the most popular folders being 'Cancer' and 'Health'. I have a lot more to learn.

I never realized how insulated in the cancer world I was until I read the Rheumatoid Arthritis Guy's blog this morning about more of the best inflammatory arthritis blogs. I like the RA guy - he is a self described superhero blogging his way through chronic pain and debilitating inflammation. I will probably even join the monthly pain support group help locally as I learn more about my new issues.

I digress. Now I have a whole new world to learn about out there - find support, learn about my new ailments, and keep on blogging.

Hindsight is always 20/20

So now that you have been down the cancer road once, what have you learned? What would you do differently if there was a 'next time' (if you were so 'lucky')?

I am sure you are saying all sorts of things to yourself about how you would do more research, find more specialists, get a third opinion, make sure you dotted your "i's" and crossed your "t's" and had  a bit more style while in chemo. There would be so many things you would do differently.

This man had cancer and then twenty years later thought he might have it again. He did learn from the first round but it was still traumatizing.

I can tell you at the second diagnosis, it is still just as shocking, upsetting, scary, and traumatizing as it was the first time. You might be slightly better prepared to act to your hindsight but you still have to get past that trauma.

I did make some resolutions - one that cancer wasn't going to suck the life out of me for a second time. I did start this little blog and I have been more proactive in my health care. But still I face the same fears and anxieties.

A few years after my breast cancer diagnosis my husband had a little brush with colorectal cancer. I remember sitting in the doctor's office with him. My husband had already been in the other chair where he was the caregiver there for support to take notes and ask questions but he was now the one receiving and digesting the information about his body. The doctor was trying to form into words what he needed to tell us about surgery, treatment, and options. I spoke up and said I have had cancer twice so we are already familiar with a lot of this. The doctor relaxed a little and started giving us  information and options.

Without cancer twice, would I have spoken up? Probably not. I would have been the little blob in fear with all the stress. But I had learned to ask questions and not accept medical advice from only one source.

Hindsight is 20/20 and we can paper our walls with "woulda, shoulda, coulda's" but we hope we learn from our life experiences so we can have a better experience the next time.