I can't always hide my illness, so I get a laundry list of drugs and my favorite, over the counter drugs (glucosomine chondroitin) I should be taking. Or worse what I shouldn't be taking. How many times have you heard "Do you know what the side effects are!" ? I don't mind when it just concern and they're trying to help, but some folks just get belligerent about it. I know my fake sugar did not give me lupus....sorry, not buying it. I also know that expensive juice my friend insisted I drink doesn't cure just about everything. She died because she chose it instead of those "dumb doc pills". I hate taking tons of pills, but I hate what happens when I don't worse...How 'bout ya'll?
Yes, bloodless!
People are SURE if I just didn't take so many pills, I'd be MUCH better off!
So, not the heart medications? Or not the pain ones? Or not the medication to give me at least a little saliva so my teeth don't all fall out right away?
When I actually am talking to someone who KNOWS medicine and I give them the list, they get all: "Oh well I guess you need all of these things."
Yep, and now I have the weird new DX which may require a lifetime of hour long infusions of an outrageously expensive immune factor replacement WEEKLY, and I can't WAIT to be told all about that.
IN fact, I can see right now that my husband so stunned that I actually have a DX of something truly scary and serious, I 'almost' feel sorry for him.
Almost, but not really.
My tombstone will say "See I told you I was really sick, and here's the DX to prove it" Now what do you think?
And now I KNOW that I would have been feeling so much better and would have been so much more productive but I'm TRULY ILL.
Let's trade places, you be sick and I'll save the world.
sigh
Do we get a little bitter? You bet your sweet bippy we do!
Hugs
Elaine
The only people who know what meds I take are the Drs /pharmacist and my husband. That is it.
When a Dr. suggests a med...I ask which one can I get rid of then?...lol
I have gotten some 'off the cuff' suggestions as to what I should try from a friend as she downs her Whopper and Fires, with a diet Coke. Gee...I only asked her once why she does that combo.
If I am out and have to take a med I usually step into the ladies room. I once dated a man who made such a fuss and public display of examining and lining up his meds at the dinner table...it was such a turn-off , even people at other tables where glancing over...so that is something I do not do. When DH gives himself his insulin shot he always turns away from me if I come into the kitchen at that time.
There is a difference between offering a suggesting, having an adult discussion with a close friend vs. an aggrandizing acquaintance spouting unsolicited opinions about an area in which they know ----zip---.
I remember someone on the forum posted they were told to: Fake it until you make it! I would have said: So you want me to go into denial.
I am more at ease offering information to strangers, woman who may ask, or mention and AI they or family have.
I have been told that if I would just get out and walk more I would get well. I will admit it is good for us, but some days or most days, I can't manage it. I do try to do it when I can such as at a Wal mart from one end of that store to the other, and still be able to carry in some groceries when I get home.
My body has a way of saying, NO MORE, AND I MEAN IT !!! lol.....
susanep :)
Ah yes, been there. My doc would like me off of protonix, as would I, but when I try to cut back the burning is terrible.
I also have an on again off again relationship with a wholistic practitioner who is just sure that if I find out what foods I'm allergic too, determine if I have any infections in my intestinal tract (as of recent testing no) and/or take the right supplements my AIs will disappear. The relationship is on again off again on again by my choice as I keep wishing there were some magic cure for my "leaky gut" that would make me better.
Agree that I don't think one food or lifestyle choice did this to me. Knowing my family history I believe there is a predisposition and an array of factors from foods to stress to hormone changes to others conspired (he he yes they did) to cause my three AIs.
Hang in there, we travel parallel paths, good to know we're not alone on the journey.
Yep!
That said, I have been greatly helped by glucosamine/chondroitin/MSM. I can't survive without that and curcumin.
Quote from: susanep on March 29, 2013, 11:32:40 PM
I have been told that if I would just get out and walk more I would get well. I will admit it is good for us, but some days or most days, I can't manage it. I do try to do it when I can such as at a Wal mart from one end of that store to the other, and still be able to carry in some groceries when I get home.
My body has a way of saying, NO MORE, AND I MEAN IT !!! lol.....
susanep :)
LOL...often I do not make it through the whole grocery store...just stop...look at DH and say I AM DONE!!!
Wow ... the thought of Walmart sends me into spasms.
DH thought at first I should try golf....he is just so funny. My right arm fatigues and aches just holding the steering wheel driving.
You could drive the cart and keep score. That would mean that the scores are honest, anyhow!
Sharon
Heard them all:
You take too many pills
You take too many naps and sleep too much. If you would do more, your body would build up more strength and you could do even more
You see too many doctors
The best way to stay healthy is to stay away from doctors and hospitals
There's nothing wrong with you, you got someone Else's test results
when I mentioned Sjogren's once in conversation the response was, so, you're going to live to be 80 aren't you?
Now I don't mention Sjogren's at all. I answer all health inquiries with I'm fine!
Driving the golf cart and keeping score, is called being a "marker." Markers are used during tournament events when there is only a twosome playing by themselves. The marker drives their own cart and keeps score. And you're right its to keep people honest.
Lighthouse: You nailed it with your post. I am also a bit miffed when ppl come up with a "new" supplement and post about it here and--if we try this we will surely feel better.
I feel miffed because so often they are "selling" this supplement. Happens all the time. If anything was a cure, we wouldn't be on here posting, whining and looking for answers. At least I wouldn't, I'[d be off to the beach or somewhere better than in front of my messy computer desk.
Lucy
Lighthouse has it right... "I am fine!"
Wow, I want to change my user handle to "I'mFine".
I'm fine
I'm fine
I'm fine
How are you?
Thanks
Hugs
Elaine
Quote from: slccom on March 30, 2013, 11:12:10 AM
You could drive the cart and keep score. That would mean that the scores are honest, anyhow!
Sharon
LOL... DH just started taking 24 yr old to play golf, and son wanted a cart...he told him he was a wimp.
When this son was a babe I used to wake up and put him in the stroller and go for 2-3 hour walks, some of the streets were so steep I would put a belt through the carriage handle and then through my pants loop.
Carolina...someone once told me an acronym for "fine".... after that I always say "good"...lol.
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.
One of my classic responses is "Surviving!" .. they usually say "GOOD.. keep it up!"
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.
Quote from: cargillwitch on March 31, 2013, 10:10:05 AM
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 :o 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
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 :)
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!