Does everyone tell you what to take/not take?

[bloodless]

Lighthouse, I thought I had heard them all, but I have never had anyone tell me I must have gotten someone else's lab report! Wow! I hope whoever told you that realizes, now, they do the tests every two or three months and it's unlikely their mixing up lab reports that often.

The rest it appears the group has heard before.

[Tivia]

perhaps because I am a nurse I don't get many "suggestions" as to what to try pharmacologically

.As an organic farmer I rarely get suggestions as to lifestyle interventions or supplements either as I am much  informed and active than most ( I REALLY push to get out hiking daily- I have to say my marathon running days are firmly behind me)

When asked how I am, I usually answer honestly but in a relative way.

If it is a normal day - ( for me!) I answer " Just pluggin' away!"

If I am struggling with an area that hurts more than is "normal" for me I might say
" Bit of a hard day- a lot of joint pain in my hands- but that's par for the course with sjogrens!" then I immediately ask them how they are.

I find if I let them know this is PART of sjogrens I am educating and also answering honestly. I don't dwell on it - if nursing and life have taught me anything is that everyone I met has a hidden "disability" whether it was a wounded childhood, relationship issues, economic stresses, health concerns, etc etc etc.

We all have obstacles that make life real and challenging.

Some I can see, most I cannot.

I do know that some people feel that there suffering isn't "real" or valid unless they have a prescription.it's part of our culture.

Having a chronic illness myself has probably given me more opportunities for empathy to the suffering of others. Although doing a lot of health education is part of my job I have found that people often just want someone to listen and acknowledge the hurt- it seems to make them feel better.

Wow how do you do it, it was a balmy 60 degrees today I got brave and decided to take my little dog on a walking trail  Yeah in my excitement for getting out of the house I forgot my water bottle! Well we get to the hiking trail and I notice but go meh it will be fine I can walk an hour without it right....

Yeah 15 min later I was in a panic trying to get back to the car and get to some water. My throat dried up the fastest it hurt to try to swallow even breathe and I vowed never again. As I sat at the gas station guzzling a bottle of aquafina like a wino with a bottle in a paper bag, I considered how fragile my life has become. No more spur of the moment fly by the seat of your pants lifestyle, I had to be aware and careful now..or be miserable. I am terrified of how my body is betraying me

[susanep]

Oh I am usually not in wal mart very long, because my left leg starts hurting high up in my thigh, plus little energy.

One piece of advice I have been given lately by a sister is to go to ......well you get the idea.

susanep

[cargillwitch]

Tivia I try to carry water with me when I go hiking - with running this just became to much to lug around, so now i walk.
For really long stints when I might run out of H2O I carry a pocket full of sugar free candies- they keep my throat and mouth wet enough usually.
It is -15 today here with 10cm of snow coming down in  white-out squalls. My only hike will be a measly hour on the treadmill.I have to really push to do it but afterwards my stiffness and fatigue is so greatly improved it makes it worthwhile!