I've thought about keeping a diary of how I feel, but then I think....why do I want to focus on how bad I feel? Which, now that I've typed that, it's given me an idea...why don't I keep a diary/journal about how well I feel?  I prefer to think positively.  I've found that if I focus too much on how much I hurt, I'll fall into a deep depression, and that ain't good.  So, back to the feel good journaling, I may start doing that instead.  I do know that I'm better at forecasting the weather than the weatherman.  I also know that barometric pressure plays a LARGE part in how I feel.  I've also found that location makes a difference.  I've been to Japan and felt wonderful, Hawaii was ok. Life up North wasn't bad, but here in Georgia, it's a constant battle.  Virginia and Florida= good, Arizona..w.o.n.d.e.r.f.u.l  so, who knows what is the answer.  Wow, I certainly went off topic.I'm gonna try to approach a journal of sorts, focusing on good and mentioning the ..sniff..bad.

What if you could SMS/text short entries from your phone, then see them all on a sheet online? Benefit: Phone is usually always on you. Drawback: 160 characters. Would you use it?

I have tried, but keep forgetting to write in it.  Then last time I forgot to take it with me to my doctors appointment.  When I am having a really rough time, I will make a note of it in my journal, otherwise I don't.  One thing I have thought of doing is putting my pain levels into an excel spreadsheet, along with notes.  This way I can have a chart of what my days are like and can see any trends that may be occuring.

I started a journal October 2008, but then discontinued about a year later. My computer crashed and I never recovered that info and just stopped writing about it. I was diagnosed April 2010 with AS. It would probably be a good idea to start a journal again now that I have a diagnosis and doing weekly injections. Like Dan said, it is such a random disease. I am a Jazzercise instructor teaching 5x p/wk and there are days that I pretty much can only stand in front of my class and not do the movement, then I have my moments that you would never know something was wrong with me.

I actually have started a blog. Its about how my day to day life is since i've started Humira...which is only about a week and half. So i guess you could say yes, i do keep a journal...if anyone wants to read it or have any questions about starting your own, let me know :))

I have never thought of doing this, but what a good idea! I can see the advantages of charting pain levels and symptoms. I'm going to try this and let you know how it goes. My doctor will probably love it. LOL!

I think it is especially important in the early years of your diagnosis and whenever there is a significant change in your condition.  I often have trouble with my memory because of the pain and meds, and a log helps me remember what to tell the doctor AND what to tell myself - I have to try to remember that bad days do end and good days come back.

I've not done anything on paper but tried to keep a mental note of my symptoms and tried to associate them with things that I do the day before - whether it was eating  a certain kind of food, trying a different exercise, etc. To be honest I found it a little confusing. AS is such a random disease. You can do something one day (such as run down the street after a bus) and get punished for it the next but then you do it another time and everything is hunkydory. I love the idea of an app to help you track your disease and analyse triggers and symptoms. It has to be super-easy to use though otherwise people won't bother. Funnily enough I work at a web design agency and one of our clients has an AS treatment (anti-TNF) and would be interested in ideas for apps to help promote their treatment. I might suggest it to them. Might as well get the drug companies to fund it!

I have been keeping one.  My Rheumy asked me to chart my pain level, morning stiffness and what body parts hurt.  I just keep it on a spread sheet.

Ah- it's more of a mental log :) Although I really should keep a more acurate recording- if i know i have a doctor's appointment I usually start to write stuff down a couple of days before, just so I remember things I want to ask and points I want to bring up etc...

I think keeping a journal would be very helpful. How many times have you had a strange symptom and then go to the rheumy and forget to mention it? It happens to me all too often. So from this day forward I am keeping a journal.
  Thanks for the idea Chris.
Jessica, I have noticed the same problem. When I sleep well, usually I don't move so my hips and knees suffer. I wonder if a mattress change would help.

Julie

Hi,

No I don't at this time.  I did however make my mother keep one for 6 months to get to the bottom of her issues by reviewing pain flow, diet, activities, bowel, sleep pattern, medication, etc.  I also have been having my grandmother keep one for her diet, as she has bowel issues and H.Pylori she is fighting due to the effects of long time undiagnosed AS.

I beleive it is very helpful and would suggest it to everyone. I have simply been to busy.  Here is something I do know, by mental tracking.  When I sleep REALLY WELL my body HURTS MORE when I wake than if I had only slept a few hours. So either I feel great but mentally draggy or I feel mentally clear and refreshed but hurt...that seems to be my trade off.

Jessica