Matt I don't think you offended anyone. i think some just wanted to explain why this may not be a "happy" site in the usual sense. I am not sure how long you have been on this site but there have been some very uplifting threads at one time or another. One of my personal favorites was about beauty tips with PsA. We talked about Genie Bras and make up that was foundation and moisturizer in one tube saving one step on getting purdy on achy mornings. I think maybe MimiB started it, jeeze even Lamb enjoyed it. I find for me the true happiness comes when talking to others here about PsA and learn to look at something with humor instead of frustration it makes the biggest difference in the world for me.
It reminds me a little of prayer. Sometimes I forget except when I want something or to complain but I think the good lord, and this site, wants to hear from us even if it's with a silly giggle! Take care of yourself MATT so you have more sunshine to spread here. Next week will be my turn...hee,hee.........
I don't think that anyone was offended, I think they were trying to tell you positive is where you find it....... They love your sentiment but not to raise your expectations too high.
We all have a lot of positive around us, sometimes you want to shoot it. How about one of those mornings when have a big decision to make. You had a rough night you are flaring but you need to be at wor (project due.) Here comes the decision. Can I risk skipping a shower and spray on extra deoderant to get through the day? and then Do I put on clean underpants and risk too much bending to get the rest of the way dressed or even make the drive. You opt for old underpants extra deoderant and hope everyone thinks your hair is windblown.
You get to work, Suzie Sunshine meets you at the coffee pot. She: "How are you doing" You (stupidly assuming she really is asking): "Tough getting going. but I made it..." She: Gee you don't look sick, want to walk to that new Sushi resteraunt 6 blocks over for lunch?"
Now you post positivley on the forum "Suzie lives, whats wrong with these people?" It really IS Positive.. (if not miraculous)
MAT said:
I am sorry if I offended some of you, it was really not my intent.
My friend (who I became friends with because we met from a Meetup group she has Lupus, I have PsA), started a general autoimmune disease group. It's been AWESOME. We have a huge variety of diagnoses, but we all deal with similar things: pain, fatigue, doctors, the drug merry-go-round, disclosing to others, etc. I like it so much better than any arthritis specific group I've found. Also, we have a demographic that is mostly women in their 20's to 40's, which is the ages we need a ton of support as we negotiate children, marriages, dating, work, etc.
If you can't find a group you like, you can start one. It's expensive, but if you charge dues (our group charges $8/yr) it will cover the cost.
Last night this group just had dinner with spouses and significant others, we had 12 people and a great time with lots of laughter. We usually meet for coffee twice a month, alternating a north and south location to net the most people in our area (a large populated area with many cities all smooshed together).
Mat, I did not take offense and I actually "got it" when I read your post. It is nice to remember that sometimes one Can actually post a good thing now and then. People already know that due to the inherent nature of the site being a support group for a chronic illness, that it is not going to be all unicorns and glitter! LOL I think some just misunderstood your intent. I know you weren't telling everyone to keep it light, or not to be honest. It was nice to be reminded to think of the positives. I for one am not faring well, but your post helped me to mentally regroup and remember a few positives, so for that, I thank you.
From a fellow North Carolinian,
DMaraJade
MAT said:
WOW, such responses to this post, my best day post and those of you who chose to send one to me personally. I think if everyone read my post I said this group has been such a huge support for me as I am trying to learn how to live with this disease and make the necessary changes in my life to do so. I love having a group to be able to b___, scream and yell about all I am going thru and so many of you have offered me your words of wisdom, advise and tricks that you have learned to help all of us recently dx people with this disease.
I just thought that with all the pain and suffering that we all go thru on a daily (or mostly daily) basis that it might be nice and fun to see when each of us are able to enjoy our lives, our families, friends and loved ones and the good times we are able to have even while living with this disease.
I never meant to take away what this site is for, I only thought about perhaps making it better.
Gardener I too didn't get a dx on this disease until I was in my 50's although I am quite sure I had it earlier given the deformity in my hands but just couldn't get any doctor to agree that something was wrong with me. I too can only imagine what it would have been like to raise my beautiful daughter with the symptoms I have now if I had all of them then and I admire those of you who do.
Juniper I love the fact that you were able to go riding and enjoy something that you love!
Bratt3120 and Stoney and Seenie I totally agree that we all try and be positive with our friends and family and need some place to vent, I never said otherwise. I just think that as we are having a bad day, week, month, etc that during that time something positive and fun has to be a part of our lives and it would be nice to see that part of this stupid disease as well. And how we don't let it beat us, that no matter how bad we hurt and have problems that we still have a lot to be thankful for.I for one love seeing what others are able to do and accomplish and I hope to one day be that way too! Even though sometimes their good day is only that, a good day.
Lamb your responses crack me up! I would like to place an order for the brownies, I will send you my address! As I just told all of you my age you can guess the generation I grew up in! Oh, to relive some of those days - or now that my head is clear it probably is not a good idea! Although I have to tell you that grapes are my favorite fruit! One of the things I really miss with these meds is all of those different variations of grapes - chard, pinot, merlot, etc.. Sigh.
See Grumpycat, this is exactly what I meant. You were having a bad day but went out and had some fun. My only question though is did your do your dancing tabletop?
For the others, I will continue to post how bad I can be some days, how I need support but I will also post my good things too. Thank you for your support and encouragement.
I am sorry if I offended some of you, it was really not my intent.
