Hi all,
I am having a small & short get together this month with some family & coworkers & friends.
My coworkers see me struggle through work everyday & are so understanding & helpful. They honestly don't know how I do it. (me either :o)
My friends all know how hard my journey has been/is too.
Some of my cousins & aunts know some of what is going on but not much & I'm sure there will be a lot of questions.
It's actually a jewelry party that I am hosting so it's not all about me but I know a lot of my family will come to "check up on me".
Anyways, I'm not sure all to say about my health. It's not a secret but at the same time I've actually been diagnosed with 14 diseases & syndromes but saying that sounds morbid to me. I also don't want to shrug it off like I'm ok, I'm not. I am back to work full time but it's kicking my ?$$ as my brother puts it.
The people who are coming are all very dear to me & are wonderful. I just want to have a good time without too much focus on me & also without making it seem I'm avoiding talking about my health.
Sorry if this is a ramble, lately I have had a hard time being clear in what I say & mean.
Thanks in advance for suggestion~ Carie
Engy,
I hope your jewelry party is fun! As for giving health information in that setting, my advice is to keep it to a minimum. (Most of our friends and family members don't really want to hear details.) If someone close to you wants to ask a lot of questions, offer to call her later and fill her in, so that other guests can enjoy the party. A simple answer like "I'm having a good (or OK) day today" is all that most people want to hear, and that will help to keep the focus on the party, as you mentioned.
I also suggest that you prepare for the party a little each day, so that you won't overdo at the last minute. Accept help with setup and cleanup, if someone offers to help you. If it is possible, try to squeeze in a nap earlier in the day.
It sounds as if you have a nice group of guests coming. I hope everyone has a good time, and I hope you sell a lot of jewelry! :)
Cheryl
I would say "Thank you for asking" on a good day, or "I am alive" on a bad day. It is usually enough to move the conversation along to other topics. Enjoy your social event as much as you can.
What is electro herbalism exactly?
Engy, you've been on my mind so much lately. I'm so very sorry to hear what a hard time you're having teaching this year. I had such great expectations with the patches, etc. You're in my prayers daily.
It's a sad truth that you're probably already the subject of lots of chatter among your coworkers and family. Chances are that everyone already knows the basics of what you're going through.
I've posted about it here before: In my experience, people really don't want to know you're sick. As I told my husband, "How are you?" is a greeting, not a question. I think it's a mixture of being afraid of illness plus indifference since it doesn't directly affect them. Sadly, I was the same way before my own diagnosis.
Personally, I don't want to be The Woman Everybody Hides From. "OMG! Here comes A66ey! Unh! She's so depressing to be around!" That's why I try to blow off a lot of my pain and symptoms in favor of having a smile on my face, especially if it's something I've GOT to do, anyhow. I often quote the late great Tony Judt, who said, "There's somethig to be said for simply doing the thing you would do anyway, doing it as well as you can under the circumstances, and getting past the sympathy vote as soon as possible." (Tony was an amazing man, simply a brilliant historian. You can read one of his articles here: http://www.nybooks.com/articles/archives/2010/jan/14/night/ (http://www.nybooks.com/articles/archives/2010/jan/14/night/))
I usually tell people I have good days and bad days. As for my friends and family, I tell them that I turn my phone off when I don't have the energy to talk, so they're welcome to call me any time. I tell them I'd rather be interrupted than ignored.
That being said, I also have a bit of a struggle in telling people about SS since it's so obscure. My having it is no secret, but I mean, what do you say? Yesterday at church my pastor was asking me how I've been doing, and the couple sitting next to me asked me what was going on. I was able to say that I was diagnosed with Sjogren's, which is the same thing that caused Venus Williams to bow out of the U.S. Open. Aha! A glimmer of understanding on my new friend's face! I was then able to say I have good days and bad days. She said, "Well, I hope I get to see you again next week, then, but if not I'll understand." Thank you once again Venus Williams!
I'm interested to know how this goes for you, my friend. I hope you have lots of fun --- and get lots of free jewelry!
When is your party?
engy,
I think I know what you mean in regard to do I say too much so that people don't want to know, or do I say almost nothing and they won't understand what's happening to me?
The advice given already seems good. A66ey, you have a great way of putting things. You are right; most people really don't want to know our daily struggles. If anyone has had that older aunt, for example, who drones on about every medical procedure at every family event, you know what I mean. :-[ It's not that we don't care, we do, but we don't need to hear it ALL, every time you see her. (Not that you would do that!)
I, too, have the problem of being clear in what I say and mean sometimes. I've even "rehearsed" what I might say and write it down. In a group if someone asks how I'm doing I might say "I have my good days and not-so-good days, but I'm hanging in there" with a smile and sort of leave it at that. If people do have lots of questions, I ask them to call me later. Then we can get back to the party or event! ;)
I hope you have a good time, and as mentioned before, do a little at a time to prepare and let people help get ready, clean up, etc!
Thanks everyone! Your responses have helped me feel better & plan better.
My party is on Sun., Oct. 16. I picked that day because we don't have school on Friday so I have an extra day to rest! My mom will be doin all the prep for me & hubby always does the food shopping.
I like the advice to tell people to call me if they want more details. That will help with keeping it short. My aunts are very protective of me & will probably be a little overbearing but I expect that & know they mean well, especially since they don't see me much now. I will rehearse a little too.
I don't wear a lot of jewelry so it's funny I'm having a party for it. It's pretty but I'm really a practical gal who wears the same stuff when I find something I like. However, I liked the idea of seeing everyone & this opportunity came up so jewelry I will get!
Thanks again, I'll let you know how it goes.
Carie
engy,
Glad we helped just a bit. :D That's great that you'll have help from your hubby and Mom. They get hugs! And yeah for an extra day to rest.
I hope you have a good time. Hey, you might find some jewelry you really like and any freebies for the host are nice, too. ;D
Be sure to let us know how it goes, ok?
Melinda
Hi Engy
I just wanted to wish you well and hope that you have a really good time at your party,I hope that you are able to be at ease with yourself so that you are able to enjoy the company and love of your family and friends.
Cheryl
Engy,
I hope you have a great party and get some free stuff!!!! I agree with everyone that people "ask" but they really don't want to "know". You are fortunate that you do have people in your corner that understand......my husband stil doesn't believe it is a big deal! grrrr! Let us know how your party goes-hootyhu
I had a wonderful time at my jewelry party.
I said very little about my health & other than my aunts smothering me (they mean well), everyone was nice.
I got a ton of free jewelry (more than I'll wear) and had an awesome visit.
My mom took care of the food (gf bakery, buffalo chicken dip, veggies, cheese & pepperoni) and hubby cleaned.
I was emotionally tired afterwards but I was glad I had it & also proud that I did because I'm not one to do those things.
Hope all of you enjoyed your weekends too ;D
Carie
I am glad you enjoyed yourself.
Carie,
I'm so glad your party went well! ;D :D That is great.
You had help, good food, good company, and lots of free jewelry?? Sounds like a big success!
You should be proud of yourself; good for you!
So glad to hear about your success!
Very pleased to hear that you had sutch a good time,and all that BLING good for you.
Cheryl