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I need some advice on how you all handle meeting new people. I have a hard time meeting new people in the first place, but not being able to eat dinner at a dinner party where I don't know the host and hostess is really uncomfortable for me.
I went to just such a party last night with my husband. And we were invited by a friend who knew the hosts, not directly by the hosts themselves. There were only eight of us there. When the hostess was getting the plates out, I let her know she wouldn't need to put one out for me because I already ate. I shared with her that my diet was super restricted. She got this twisted up look on her face and looked shocked and saddened (this is the look I absolutely hate - I've seen it so many times on people's faces). It made me want to cry, but I held it together.
My husband wants to make things easier for me in these situations, and he has lots of advice to give me on how to handle it, but I honestly just feel angry when he tries to have a positive attitude about it. I know he is just trying to help me and love me, but I would honestly rather just avoid this kind of socializing altogether. It is so stressful for me. But he loves socializing and feels sad that I have such a hard time with it.
Have any of you run into this issue? I really need advice from people who "get it." How do you handle the awkwardness?
Hey Lisa- My first thought is
Hey Lisa- My first thought is that she has the issue not you. It sounds like you were very respectful and clear. She has some insecurities that she needs to deal with but I know that doesn't make you feel any less awkward. I don't like going to parties or anything either most of the time. "Luckily" for us, my husband is an introvert so I am the one who generally tries to push the socializing. It works best for us if we make the food but of course, that is a whole lot of work so basically, we don't do a whole lot of socializing!!
I wasn't much help but you know you are in my heart.
xoxoxo
Hi Lisa! Hugs! I totally get
Hi Lisa! Hugs! I totally get this. I was just talking to my mom about this the other day. How sad I get with people's reaction when I tell them I already ate or brought my own food with me. It is so hard to feel accepted by society for not being able to engage in these "normal" social situations. Everything is centered around food it seems, which makes this so difficult. My husband is the same way trying to make me feel ok with the situation, when you just feel ackward especially with new people in a small group setting. Unknown it is pointless to get angry or sad about this, but I can't help it. Human nature to want to feel accepted. Would love to have a dinner party with you! Lots of love!
Oops, darn auto correct and
Oops, darn auto correct and my quick typing for trying to keep myself awake and not focusing on my hurting body during a contuing education course. LOL! Anyway, unknown should say although.
Hey Lisa Ann - My husband and
Hey Lisa Ann - My husband and I have set an established "Thursday night dinner" where we invite people we'd like to get to know better over to our house. That way we can cook safe and healthy meals and socialize without the pressure of worrying about food. I will even modify dishes for myself - I can make a mango salsa for people to put on their fish and just skip it for myself. The diet pretty much always comes up in conversation for me - I can't really help it because its such a huge part of my life right now - but generally people are very understanding. Maybe living in LA helps since eeeeveryone has some sort of food intolerance or at least has friends who are on crazy diets. I actually feel more sane talking about it with people and I feel like it makes people feel safe talking about themselves in a more open way.
I also try to make socializing less about food and more about activities. I have a ladies singing group that has been really good for both my friendships and my mental health. I don't know where you are with exercise ( I think you recently posted about it) but I take dog walks with people and meet up for tea/coffee more often now than I used to. The most annoying social aspect I deal with now is all my close friends asking (semi-jokingly) "So can you get drunk yet?" Um. No. But trust me, I'd love to.
Also ditto to what Ally said!
Also ditto to what Ally said!
The obamas once said when
The obamas once said when they first entered the white house that they don't have time for any new friends because they have a big job to do. Whatever your political preference is, this saying stuck with me. I am currently at home while my kids and hubby are at a party. I just don't feel like socializing right now simply because it tests me on so many levels and thank goodness they get that. I did a party yesterday but two in one weekend is just too hard. I find it helpful to just dedicate this time to me and have friends over under our menu...or I just tell people I am seeing a specialist in LA and am on a very exciting life changing path to cure some long term inflammation. They usually get excited to hear that and are supportive. If not then they have issues in my opinion.
i know his post is frank but hope it helps in some way to share my personal thoughts.
hang in there, remember you are so strong to stay true to this remarkable path you are on!
best, Carey
Hi Lisa Ann!
Hi Lisa Ann!
I have found when you go over someone's home they really want you to eat with them. So I bring my food and put it on their plates. If they are unaware of my situation I let them know ahead noof time that I am working with a specialist from LA for a serious health condition, and they don't need to prepare food for me as I will be bringing my own with me. This usually leads to more conversation where I assure them I do this all the time and just look forward to dining with them on their plates in their home. I even try to match my food to theirs, but that is the love of cooking in me. :)
If it is a baby shower or something like that, I don't say anything but just slip my food onto their plates. So many times no one even notices. I bought a cute bag that looks like a purse from TJ Max that I carry. More often than not I like what I have brought just as much as what they are eating. Sometimes even more! But my favorite part is leaving the party knowing everything I ate was safe for me, yet I was able to enjoy the event.
Thank you all so much. I
Thank you all so much. I appreciate your understanding, encouragement, and advice.
As I read through all of your comments, I realized that part of the reason this is so hard for me is because I have essentially been dealing with the food issue for the last 13 years. Before I started treatment with Dr. B, I was on Elmiron and Hydroxizine for 10 years. Those two drugs, along with a limited diet of foods that were "safe" for my bladder were my ways of keeping bladder symptoms under control.
Nine months into treatment, I had weaned myself off of those two drugs plus a bunch of others. Two weeks after I had stopped the last and most difficult drug, I began to experience incredible bladder and vaginal pain. The only foods that didn't make it worse were chicken, beef, green leaf lettuce, cucumbers, cooked spinach, and potatoes along with butter, olive oil, and sea salt. This is all my bladder has been able to tolerate for the last 19 months. Every time I've tried even one bite of well-cooked cabbage or broccoli, my bladder burns even worse for a couple of days. So this is a super-sensitive issue for me, and socializing with people who have no clue just gets me sad. I don't know how to not feel sad about it.
For those of you who are new to treatment, I am a rare case. The vast majority of people move through the lists at a much faster pace. I personally feel that once my bladder gets to a certain point, I will move through the diet like everybody else. I think I'm getting close to that point, but I still need to be patient with this process. I just don't want anyone reading this to get scared. But even if you are one of the ones for whom this process takes a while, I am making progress and you will too. It is going to be okay.
Thanks for letting me ramble a bit. I am taking all of your suggestions and figuring out what will work best for me. I welcome your continued encouragement.
Lisa
I am praying for you dear...I
I am praying for you dear...I know you will turn a corner as your bladder heals. I wish I could come over and cook for you. But I send you these recipes with my love.
Homestyle Fries
1 1/2 cubed potatoes
Boil 5 min in salted water and drain.
1/4 c oil (or half butter and half oil)
Heat in nonstick skillet to med/high and add drained potatoes sauteeing 5 min without stirring. Stir and cook another 7 min. Salt and enjoy. Great with a steak!
Perfect Steak
Liberally oil and season with salt a nice thick steak. Keep at room temp 30-45 min.
Heat a cast iron skillet high for 1-2 min until smoking hot. Pan fry steaks with no oil on skillet 1-2 min each side. Put a tab of butter on each steak after turning.
Now put in a 425 degree oven 4-5 min turning halfway through.
Shredded Hashbrown Sandwich
Shred a potatoe after heating some oil in a skillet on med. Spread the shredded potato over the bottom of the skillet and season with salt. Cook until brown on one side, flip, and cook until brown on the other side. Cut in half on a plate. Layer some shredded cucumber on top of one half, some cooked spinach, and some thinly sliced cooked beef or chicken. Put other half on top. A messy but delicious sandwich.
Lettuce Wraps
Take a nice big piece of green leaf lettuce and put some cooked, salted ground beef on top. Slice some of the Homestyle Fries on top of that. Then a bit of cooked in butter spinach on top of that. Season with a bit of salt and fold up to enjoy.
Cucumber Bites
Slice a cucumber into thick slices. Drizzle with a bit of olive oil and dash of salt. Put a bit of cooked spinach on each, a thinly slice of cooked beef (maybe leftover from perfect steak), and a bit of shredded cooked potatoes tossed in warmed butter on top. Season with salt and eat a plateful for lunch.
Beef Roll Ups
Take a big piece of lettuce and spread with butter. Put a thinly sliced piece of cooked roast beef on top. Shred a cucumber over and drizzle with olive oil and some salt to season. Roll up and enjoy.
I send you a big hug and prayers, Lisa Ann!
This is a GREAT thread!
This is a GREAT thread! Thanks to all. This is a big issue for my husband and I. He is super social and wants to do go out all of the time and have me come to parties. A lot of it revolves around cocktails, wine, and appetizers. Can't have any of it. AND it makes me very sad.
Yesterday I went to a birthday party and the hostess was already very tipsy when I got there. She is always asking me: "How are you?" When can you drink again?? Will you be cured?"Sometimes I feel strong and can answer, but sometimes it is just so annoying. Certain people ask me over and over, when will you be able to drink again?? The last thing the hostess said to me when I was leaving the party was, "Go have a vodka!" Ugh. Really?
I do like having family parties where we make delicious meals. We eat very well and I feel very supported. But everyone else drinks so that bugs me a lot.
I think when I start having more social gatherings I will probably do brunches, because I can enjoy coffee and most of the other breakfast things without feeling deprived.
I usually say no to my husbands pleas to go out socially. He also wants to go to different restaurants and I always have to call ahead. It is very tiresome. At least I have found a few places, but I hate it. And I still have not gotten over watching friends and family drink in front of me constantly. Don't know when I will. I wish I had better suggestions. I usually eat before I go to a party. But I have not been to a dinner party in a year. If someone invited me, I would just bring my own food and I don't care what the hostess thinks. My sister has had parties where she plans things for me and she is a chef so that is nice. If it is a friend hopefully they can make something for you and you can bring something as well?
Sorry I know this is really hard. IT is one of the hardest things for me.
If we don't excel at health, the only other option is disease.
Mimi, you have to go to Spain
Mimi, you have to go to Spain. They serve beef and lettuce in every restaurant. If not you can always eat tortilla de patatas ejejje kisses
Mrs A- Please move to Philly
Mrs A- Please move to Philly and hang out with me! And of course, Lisa, I wish we could get together. I would love to eat beef and lettuce with you on my nicest plates. (((((((((((((hug)))))))))))))
You guys are all so awesome!
You guys are all so awesome! Thank you so much, Mrs. A, for your recipes. I will definitely try them. Where can I find a good quality cast iron skillet? I've looked around, but I'm concerned about getting one that is pre-seasoned because of the chemicals.
Mimi, thank you for being so honest about how hard it is for you to socialize with people who don't have a clue. It makes me feel better. Sometimes I feel like I should just be able to get over feeling sad about it, but this is the one thing I just can't seem to accept with grace. I would rather not even go to parties and such. I want to be able to be okay with it for my husband's sake, but right now I just can't get past it. I am continuing to pray about it and ask God how to be content in the presence of people who don't understand, and how not to feel such a strong feeling of loss and grief as I watch everyone enjoying their food and drink.
Deirdre, you are the sweetest! Someday when we are well, I would love to get together with you and enjoy a feast!
Love to All,
Lisa
Hey Lisa- Whenever I have a
Hey Lisa- Whenever I have a really tough feeling that I can't seem to "resolve" this is when the 2nd level of acceptance comes in for me. So, I just accept that this is how I feel. For right now- as you said- you can't fully accept this discomfort and sadness so maybe just accept that part of it? This has really helped me. Hope that makes sense.
Yes, this is exactly what I
Yes, this is exactly what I started thinking after I wrote my last post. Thanks for confirming that this is what I need to do right now. I've been feeling a little more peace just accepting that I feel sad about it.
Lisa Ann you have to found
Lisa Ann you have to found what I have called your own "gurú status" and use it in your benefit. When somebody is ill or had been ill, that experience gives your another way to look at life so, this makes you different from everybody else. You have to use these experience to socialize with people , you can give them so many good advices about life.
So now, when I go to weddings or parties it's fun how everybody addapt their meals to my limited diet and explain their diets to me like I was a health gurú. Then, they start to ask me deep questions about life, death, love and health, and I found myself doing speeches like I was a politician or some psicologyst ejjeje
I found my new guru status very anoying at times but my boyfriend finds it very funny and is always elocubraiting what they are going to ask to me these time, for exemple, whats tha meaning of life???OMG!!! jeeej
Nur,
Nur,
I have to admit, I do find myself "waxing poetic" sometimes about life, suffering, and the meaning of all things. And some people really appreciate this about me and find my insights refreshing. But some people feel absolutely uncomfortable with the idea of someone suffering for an extended period of time. I guess I get it. If I hadn't gone through suffering (and watched my mom suffer as a paraplegic), I wouldn't know how to handle other people's suffering either. Something to think about.
Deir, I would love, love to
Deir, I would love, love to hang out with you in Philly! I would find out what all the great local food is and adapt it for us on your best plates. I might get there some day with 3 sons in the military. :)
Lisa Ann, I am not sure where to buy cast iron as I have had mine for over 20 years. But I sure do love cooking with them and reach for them the most. I am going to keep my eye open for more recipes for you...I have your food list on my desk. :)
Mrs. A, you are the best!
Mrs. A, you are the best!
I've really enjoyed reading
I've really enjoyed reading this thread - it's an issue familiar to all of us I think. I wish we could all get together and have a "safe" dinner party - it would feel like such a relief to not have to explain or check on everything before eating. I have wonderful friends who are so accomodating, but even when they try very hard, they often miss the mark (lemon on fish, for example).
I've found that socializing is difficult also because I just have felt so sad for so long. Even though there are now many wonderful moments that I appreciate so strongly, it's hard to talk about "what I'm up to" or "what I do" when what I do is work on healing, relaxing and trying to have a positive outlook. This way of life does not fit into the normal paradigm.
I don't mean for this to sound negative - I am celebrating so many wonderful successes lately- but I sometimes feel like this disease has been such a confidence drainer. It's hard to be social and make new friends because I feel like there is this deep sadness underlying all of my interactions and many of my experiences are tainted by fear. Can anyone relate?
Ceb217, you expressed it
Ceb217, you expressed it perfectly and I feel the exact same way. I find it really hard to relate to people in general anymore. I often feel like I'm just going through the motions with friends because they can't understand what I am going through and I can no longer understand their world. At 23 all my friends are in their prime in terms of health, and able to do everything, go anywhere, eat anything. I can't relate to their concerns over makeup and petty arguments and small concerns. i don't mean this in a condescending way, I know it's all relative, but it does sometimes make it hard for me to keep my mouth shut and not say something rude to them.
The thought of trying to make new friends and meet new people seems "so much effort". It's not that I don't want to, but as you said there's this sadness and fear that makes it very difficult to connect with people who haven't been through something similar. Even if they could begin to understand the chronic physical pain, there's no way they could see how much of our lives are taken (or have been taken) up by this illness; how much fear and isolation and mental pain it has caused. And then the diet only makes socializing more difficult!
I also don't want to sound entirely negative, because I do believe having IC has made me grow mentally and made a stronger person. But damn it's been hard.
Yes, you guys expressed
Yes, you guys expressed exactly how I'm feeling! I have been home-bound much of the last three years, and most 40-somethings are "out there" doing things with their kids, spouse, friends, etc. A lot of women my age have careers that they are thriving in because of their expertise and life experience. And they don't think twice about the food they eat (at least not out here in NC). When it gets right down to it, there is a part of me deep inside that wishes I were doing all that.
There is also a part of me that is so thankful for this experience of long-suffering. I truly am a better human being because of it. I'm a better wife, mother, and friend. But when I meet new people, I am reminded of how much I'm missing out on and the grief resurfaces.
I know I will be able to do all the fun stuff again in the next few years and get back into doing my favorite things (music and teaching - which I do on a very small scale now) The reason why I'm working so hard to get well is to be able to do what I love without fear of pain. But I will always be "different" as far as what I eat and drink, and what I do to take care of my body. I think it will be easier when I'm feeling fantastic and I watch all the other 40 and 50-somethings starting to experience health problems as a result of all their current habits. Maybe my life isn't so bad after all :)
I think I may have just talked myself out of grieving so much as I wrote this post. At least for the moment...
You know, I was thinking
You know, I was thinking about what I just posted. It was kind of disingenuous toward people who don't know how much their lifestyle might be hurting them. I desire to have an attitude of love toward people, and I think my last post was a manifestation of the bitterness in my heart that I'm trying hard to overcome. Just being real...
Hey Ally! As usual, you say
Hey Ally! As usual, you say things with such eloquence. I agree with you in so many ways!
the thing that makes IC so differnt from Diabetes or other things like that is we have chronic PAIN along with the food restrictions. In some ways, that might nake us "lucky" because we have a real serious alarm going off in our bodies unlike most low level diabetics (certainly they have issues but not so "loud") My friend is trying to change his diet and lifestyle to deal with diabetes but he doesn't have to suffer daily like we do so in some ways, it is harder because he has to rely solely on will power. But i would say there is NO comparison between us and people choosing to be Vegans or whatever. My sister is a Vegan(actually my whole darn family is Veg in some form or another except my mom- drives me crazy) and I really have a hard time relating to her self imposed restrictions!
But your main points are well taken!!! xoxoxoxoxoxo
ps- I ahve NO time to write so I hopr this doesn't sound either stupid or critical!LOL
Ally,
Ally,
I appreciate everything you said, and maybe I am being too hard on myself. But I really do feel anger toward people sometimes who don't have daily pain and limitations because I want that so much. I think if I can learn to love people and not be jealous of them, I will be so much happier. Does that make sense?
Maybe recognizing these emotions and dealing with them is part of the journey. I didn't realize these feelings were so strong until I started having some good days with very little pain. Today is not such a good day. I'm in bed and in pain. But I know it's only temporary.
I'm so proud of you and your husband. You guys have such great attitudes. And you are so right about all the illness in the developed world. Thank you for reminding me of that perspective.
Much love,
Lisa
So true, what you say Lisa
So true, what you say Lisa Ann!!
Last week was for me the best week I have had in years (no chemo sympthoms -feeling intoxicated, teeth and neck problems, breath-..., no backgroung urgency for the first time in years, In IC I don't have pain only urgency). And I went crazy happy. Today urgency came back like a bad dream. But these week was AMAZING and I was all the time imaginating what will be my life if only I can feel like that every day. This is my hope really. My only hope.
Kissessssssssssssss you girls are amazing!
Hi dear one- I feel for you
Hi dear one- I feel for you today. I am by far one of the worst in the envy/ anger department but I have come a long way since this nightmare began. The only thing that has helped is really bringing the focus back to myself each and every time. I know I have told you about my gratitude journal. Each night, I write whatever I am grateful for that day. Sometimes it is profound but most days it is very mundane yet important things. it has really helped me to keep the focus on me and my growth as a human being. I only offer what has helped me not because I think you need improvement-YOu are doing so well and you are inspiring.!! Yeah- you are angry sometimes- of course you are-because you are human. But I know what you mean about your own happiness being impacted by this so keep working on it and you'll get there. Progress not perfection. ((((((((HUG)))))))))))
Deirdre, Nur, and Ally,
Deirdre, Nur, and Ally,
Thank you so much for your kind thoughts. They are helping me get through this flare right now. Words can't express what a blessing and inspiration you all are!
Ally, thank you for reminding me that I am on my way to wellness. I had such a great week last week, and my bladder was so calm! To be feeling this bad after such a great week is mind-boggling, but I know it's not uncommon during treatment to have these big swings sometimes. I just wish I knew what was going on and why this is happening.
Deirdre, I think I may start a gratitude journal. I need to focus on what is good in my life as the negative starts to creep in. Gotta fight back sometimes. I know I also need to surrender and just feel the feelings sometimes too. Love you, girl!
Lisa
Wowza this is such a great
Wowza this is such a great thread I had to give it a BUMP!
If we don't excel at health, the only other option is disease.