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I have been doing better gradually over the past year with many many downs throughout but overall, I'd say I am a little better.
I have had more opportunities to get back into my field, which is Theater,and recently even more stuff has come up. I am so nervous that I can't handle the new stuff but a big part of me is just sick of waiting to get well. I recently taught some classes with other pros with much better resumes than I- (Broadway, tv, etc) and while I felt a little out of my league, I could hang with them! Someone I met through that workshop, called me recently to do something else and now it looks like I will be doing "Dancing with the Stars" type charity event- where I am one of the pro choreographers! I am similtaneously excited and scared! I flared after the short dance rehearsal I had for the workshop but I was ok the next day so I guess I can just expect to get worse but be able to handle it. I also performed with my band on a night where I was not feeling good at all. I think I am coming to accept that if I want to do these things, I am going to have to do it whether I feel good or not. When I was crying a few days later saying "How am I going to do this band?" My husband reminded me that I HAD done it despite not feeling good that night.
I never expected that I would be so out of it for so long. I kept not canceling my gym membership all these years, thinking "next month, I will feel good enough to work out more." I am invigorated by the thought of dancing full out and being in the limelight again (after all- i ain't getting any younger!- not sure when I will get a chance to really dance again) but also it is scary. First off- there is a black tie dinner event to "unveil" the partners and I was thinking -"How do I not eat or drink anything the whole night?" I generally don't care about that but all of a sudden, i don't want these people to know anything about my illness- I just want to be free so I will have to find a way to explain quickly why I can't eat or drink. I know that isn't a big deal but it is just a little thing that is stressing me a bit. Second, can I physically do this? I don't know!
I also might be working on another show that is coming up and it has me nervous about juggling my health, kids and jobs. I am still not even close to out of the woods- having flares, days that aren't good overall etc but I am feeling like I need to do these things. It is hard to know what the balance should be with rest and work. i know some of you don't even have a choice, you are stuck at home so apologize if these concerns seem puny compared to yours, but it is something I have been thinking about.
Survival has been the name of the game for me and now I feel like I want to expand more and it is scary but exciting.
Also- this is a little question but when some of you go out- would you ever order a seltzer at a bar? I am so exact with the diet/water- never ordering coffee,water anything since it isn't spring water. I am thinking- "Would one regular seltzer at this event flare me?" Sometimes I think I am too strict and one non spring water seltzer wouldn't hurt- or would it?
Deir,
Deir,
What an amazing post to read and my heart is exploding with happiness for you! It is a true sign of healing to begin thinking about the future. Remember all those days when we began this treatment together ......I wondered how I would even get through the day....as you said "survival". As you know, I have had this condition for 14 years in various stages of severity and the reality is maybe I always will. That is not to say I will be in pain everyday or my muscles will burn or my heart will race...sigh...BUT there will always be a careful diet, fatigue days and a certain susceptibility. I am over the moon excited for your opportunities and fully support you taking them on. The spirit is equally important as the clinical health- which you well know- this disease does not define us and I think all I would have missed in my life in the last 14 years if I had waited to get fully recovered until....... You will find the balance you need to pace yourself and define new boundaries.
As for the seltzer water, coffee question......I am not as careful as you are when I go out. I still have a cup off coffee. I have not had seltzer, but tea I have and have had no issues whatsoever;) I am just careful as to the the type of tea- real half n half etc.
Please keep us posted as your career picks back up! What an exciting time....you are so very talented;)
Much Love, Katie
Deir,
Deir,
I completely here you!!!!! I have recently started back at school for my second degree. I am tired of waiting around to heal. I guess my outlook is I can't allow things to hold me back. I have to live my life. I do not want IC to control me. I am much better than when I started but I still have issues to deal with. I still have flares. Just yesterday I flared from eating a sharp cheese. Also, my husband and I are probably going to start trying for kids soon. When I started this treatment (18 months ago) I thought that we wouldn't try for kids till I was "healed". I don't know when that is going to be. And it may not ever be. I may always have occasional flares and occasional frequency, etc. Today, I am aware of my bladder/urethra and I just have to deal with it. It is not debilitating, it is just more annoying/uncomfortable. So, we have made the decision that we are going to try for kids even though I am not 100% healed. I have had to come to terms with that because just as you said, I am not getting younger. I am scared. I will get through it though. Just as you will get through your choreography, etc. I think that this disease strips us of our identity. It takes everything away from us. I think it is important to try to live you life as if you didn't have IC, as much as possible, as much as a personal is physically able. I know it is hard to go out in public and explain to people WHY we can't eat or drink, etc. I normally just tell people I don't eat the food bc of food allergies and I don't drink because it is not healthy and it contradicts my beliefs. I tell them I spend so much money on organic food and supplements that drinking would just cancel everything out. I am proud of you for doing what you love!!!!! When I go out places in the public I don't 100% stay on the diet. I just cannot. I will try to make the best decision for me that is available. And yes I order seltzer at the bar and have them put a lemon or lime on the side so it looks like a drink. And it doesn’t bother me. I was recently at a wedding and I ate the wedding food. It was filet with mashed potatoes and veggies. I ate all of it. I cannot be worried what the steak was marinated it, what spice they used, etc....and normally I don't flare from it. I just try to make the best choice. Obviously, I don't eat dessert, and I couldn’t eat coconut crusted salmon or BBQ shrimp, etc. I just try to make the best choices. I cannot be 100% or I'll make myself crazy. I guess my rationale is my body is SO much healthier than it was 18 months ago...I am going to provide a much better "home" for my baby to grow in. I just try to make the best choices because my best choice today is way different than my "first choice" 18 months ago. I hope this helps and I wish you all the luck with your new and exciting opportunities. YOU GO GIRL!!!
Deir, I am so happy and
Deir, I am so happy and excited for you!!!! I have tried to keep up with some what I call close to normal activities while in treatment. No where close to normal but it does help me feel a little normal at times. I agree if this is as good as it might get then I'm gonna try to live it as much as my body will allow. By the same token I have had to learnto listen to my body and I'm learning to say no sometimes which can be so difficult because I don't want to go into some long explanation to people. But I'm learning its ok to say no just because I dont feel well and I dont really owe an explanation. I pray you will be able to take part in all these wonderful exciting adventures you have ahead of you and enjoy the heck out of them!!!!! Hugs and wishing you the very best.
DEIR!!! I'm so excited to see
DEIR!!! I'm so excited to see this post!!! I know we both have been so busy, but I always wonder how you're doing! You are amazing! And I'm just beaming for you!!! I know you don't believe in the Universe and all the stuff...but my dear the planets are aligning just for you!!! Run with it! You ARE Ready!!! All the puzzle pieces are coming together! All of this self-expression, talent, job offers ARE Part of your next phase of healing! They are the vehicle to get to the next level and so on and so on! Love you!! You go gettum' girl!
Ugh! Just typed a long post
Ugh! Just typed a long post and poof gone! Deir, I just wanted to say how excited I am that all this is happening for you!!!! You are so talented and believe it will be a good distraction and am so proud you are taking in more and just trying. Living with a chronic illness is so isolating, but you are getting stronger, you will do great!!!!
I love you guys! Thanks so
I love you guys! Thanks so much for the encouragement. It means so much especially because I know so manyof you are intensely suffering and still take the time to tell me I can do it! Funny, I must have been posting this yesterday because I really needed this encouragement because I spent a good portion of the day crying and feeling so hopeless. It doesn't happen to me often (the meltdown) but sometimes, the past almost 4 years with IC just comes crashing in on my heart and the whole weight of it all just overwhelms my coping mechanisms. But as usual, I brush it off and start over and all of these posts help me so much. So, this morning, I am going to attempt to take a ballet class as long as my 4 yr old will sit there and watch. It is only an hour and i should survive!! Although I will probably not be able to walk tomorrow.
THANKS!
Haha Deir, that last post
Haha Deir, that last post made me laugh!! I do some home ballet barre classes and yes, my muscles get so sore I can barely walk. BUT they do recover. I don't think I often flare dramatically from exercise either at this point, although I still have frequency in the afternoon or after coffee, besides the bloating minor frequency is still my worst symptom.
How is your right knee holding up? Do you notice it tied to your cycle? (Mine hurts worse around ovulation).
I have periods where I really start to think about my life: More travel, more work, more interests, and then some symptoms creep in and I go back to management mode. I trust that this will get better and better so that I can live my best life. If I can get to a super manageble place for most of the month I will be thrilled. To be able to exercise without pain, fit into my clothes again! eat in restaurants and have sex, those are the biggies and will for me resemble a normal life!! I have bits and pieces of it, and I think we can get there. Keep going!!
If we don't excel at health, the only other option is disease.
Also, I drink coffee out
Also, I drink coffee out twice a week, and sometimes black tea. I usually get an Americano, rather than the drip coffee, which is usually made with several shots (espresso is lower in caffeine than drip coffee because of less contact with the grounds) of very dark roast, low acid coffee and hot water and I ask for heavy cream which they usually have a carton somewhere tucked away that they use to make icky, sweetened whip cream. I love to do this once in a while: Meet a friend for coffee, or stand in line with the other parents at the coffee shop after I drop my kids at school. It makes me feel SO much more normal. I don't always drink the whole cup--sometimes I go home and brew my own, but there is something about ordering at the cafe that makes me feel so normal!!. I order Peligrino at restaurants or whatever bottled sparkling water they have. I think the soda machines are gross, but I am sure having a few sips of seltzer is not the end of the world!!!
If we don't excel at health, the only other option is disease.
Blah! Haven't been feeling
Blah! Haven't been feeling good now for a bit and have had a few nights of really bad flares again. Last night, I went down the dark road and couldn't get to sleep until after 1;00. I started to panic which is the worst for me. Now I am worried that I should never have agreed to do these new things. I am so worried that I won'tbe bale to handle it if I keep flaring at night. I have multiple levels of terror- 1st is the actual paina nd urgency which is awful but I know it will pass-(prob unitl the next night but still I can get through a few hours) the next is- how do I handle everything on my plate with not enough sleep - the 3rd and worst of all is Why am I still so bad after all this time? Why hasn't Matia been able to really help me?
I want to move on in my life but I feel like I am never going to get past these flares. EVERY TIME I think I am doing better, I go right back.
Agh I don't know what I need but I guess just some encouragement that I can still work and take care of my family if I am still feeling like this. :(
Deir, this is all so
Deir, this is all so difficult! I am so sorry that you are dealing with ALL this! One thing that I am really working on is taking everything a day at a time and seeing the good that is there instead of worrying when and how the bottom will fall out. Yes all these things might happen and make it difficult to carry on BUT these new things you are trying might bring you alot of pleasure in spite of the pain. I have traveled some even with this treatment determined that it will notcompletely rob me of life. I've had die-off and pain during these trips but I've also gained joy in just the change of scenery. So while yes this disease and treatment holds me back from 100 percent I can still enjoy the 20 percent or whatever. I say stop with the what ifs and pledge forward. If you see its too much pull back. You have to take care of you :) hugs and best wishes.
THANK YOU!! I know you're
THANK YOU!! I know you're right. I was so happy this summer when I was working on my Solo show. That was a huge undertaking but I did it. It is hard to know when I am onthe right path or making the right decisions to take care of myslef but I guess I know that when I am doing some more creative work, I feel good so the rest is up to God. I have to let go of the what ifs
Hey you,
Hey you,
Some celebrity, years ago, literarilly set himself on fire while free basing. He took off running, while in flames, and ran for quite a ways. Eventually rescue workers were able to wrestle him to the ground and put the fire out. I guess they wanted to know why he chose to burn a bit longer instead of stopping to be helped. He told them that he was afraid that if he stopped he would die - figured it was hard to die while still running. I kind of held strongly to this story during four cancer treatments and then IC. Maybe a fool does keep running. However, maybe it's that kind of fool that's still there to run when they've beat all the odds...........
Deir, you'll figure out the ratio. I think, like all of us that found our way here, refuse to give it all up - even while on fire.
Denise-That is simply awesome
Denise-That is simply awesome;)
THANKS!
THANKS!
Denise-
Denise-
I love your comment. Well written incisive and def quotable. May I post this in public places online and let others read its brilliance? Names will be withheld if you like?
Katie, Deir, and Honeybee -
Katie, Deir, and Honeybee - Thank you.
Honeybee - I would love for you to post - I have no problem with may name appearing - kind of nice to get an ego boost : )
Take Care All