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Hello ladies. I hesitated coming here as I didn't want to get negative on you, but I had a tough experience last night I need to share.
I had an aunt visiting town who I really wanted to see after many years. So I went over to my second cousin's house yesterday afternoon. I had a feeling a meal would come into play as the day wore on. That side of my family doesn't know a lot about my health struggle with IC, they just know that I do coaching work for others and lead a healthy lifestyle in general. So, naturally, I brought some emergency food items just in case and, in general, was very glad I went and had a lovely visit.
At dinner time, my cousin announced they were ordering pizza. She is very sweet and quietly said to me, look at the menu and we'll order you whatever you want. Of course, there was nothing on that menu I could even entertain except a salad with disgusting iceberg lettuce and a few tomatoes and mozz cheese. I'm on list 2 with tomatoes, so I ordered it just to "fit in" and then heated up my brown rice, roasted turkey and veggies I brought along.
The pizza came and all 8 of us sat around with their 3 little adorable kids and, of course, everyone wanted to know what I was eating and why (not in an attacking, condescending way whatsoever, just general curiousity). I of course, in my own light way, played it down and said that I eat this way because of some health troubles and it keeps me off drugs and out of pain and able to retain my flying career, blah blah blah. As my husband pointed out later, I am always trying to brush it off so I won't seem like the freak in the room, but they generally do care and are curious about it, but I can't help but wonder how much they really care or take interest or understand for that matter. I mentioned how wheat gives me migraines and makes me want to take a nap all day and my aunt, who suffers form migraines as well, took it all in but did't say much.
Anyway......halfway through dinner the kids got to do their weekly task of picking two papers out of a basket with days written on them. They get to pick 2 nights to have dessert. Anyway, there again came the whole conversation about how that would never happen in my house, I joked about how there would be no dessert for my kids, and hence the reason I DON'T have kids. Ha ha ha. All in good fun, but secretly screaming inside because this IC prevents me from contemplating them.
Then, because I'm a New Yorker and I have not had pizza in 4 years, I had to have a bite of my hubby's slice. ONE BITE. And I did and that was the cheat that sent me spiraling in negativity.
Driving home, my bladder, which as most of you know hasn't progressed much in the past 2 years, started insanely burning and I had an absolute melt down and started sobbing. The diet is so hard sometimes, even for me who is totally into healthy living and a healthy future. I love it 99.9% of the time! But I cannot help but leave those situations feeling hopeless and depressed that I can't let loose for one single second, one single meal, and just have fun and fit in. Driving home, I was so envious of my cousin. She is perfectly put together, organized, with the most wonderful helping husband and the 3 most beautiful, well-behaved, engaged, funny kids. She has a seemingly perfect life (I know nobody does), and I can't help but feel so jealous and depressed that I will never have it. I'm not desperate for kids, but at 38, I want to have the choice and not have this IC be the ruling factor. I want, after 4 years of see-sawing between list 2 and 3 foods and years of constant herbs and pills 3 times a day, no fruit, endless trips to pee, and the die off, and the rest of it, I JUST want to be out of pain and have FUN and be able to attend an evening with friends or family now and then without thinking about every little tiny morsel of food I eat. The more I do not progress the more I feel like cheating and the more I go into this vicious cycle and backwards track. It's absolutely making me crazy.
As well, driving home, I read an email from Dr. B. I had told her how being back on the SF protocol was going a bit better and she replied that that means I still have serious bacterial overgrowth problems and that's when I completely lost it. How, after all this time and hard work, can this not be healing and I'm dealing STILL with serious overgrowth?!? I am SO frustrated!
I am sure my wonderful husband is so tired of the same rant and I am feeling a bit better today after letting loose on him (he must really think I'm insane since I was the one pushing to go to this gathering), but it honestly makes me want to never leave my house and never be in those "fun" situations ever. The hardest part is I am such a family-oriented and social person. I live for that stuff. I know and take pride that I am doing so much good in the world by using my painful situation to help others who want to get healthy with my wellness coaching work and leading by example in many ways. It's very gratifying. But at the end of the day I am not better, I am not showing signs of healing, and I feel that my current IC management is as good as it's gonna get. I feel like a fraud teaching others how to get well and feel well, yet I am not well myself after all of this diligence. I am so much better in many ways than I was when I first came here, no doubt. But I have never gone a day without symptoms (burning and frequency) and I'm just so exhausted talking about it, thinking about it, and writing about it here.
OK, so now that I was super negative, here is one positive---since switching back to the SF and BIF protocol, I have slept through the night most nights and instead of waking at 5am every day, I wake around 6. Still with burning, but an hour more sleep.
Thanks for your support.
Dear Sam
You have me beat on the longevity thing - however, I too feel like it's been way too long. I try not to envy those that have moved on - it's a bit difficult. My imbalances aren't yours - I guess we all have, as the saying goes, our own crosses to bear. I spend most of my day, day in and day out, terrified, over and over again -driven by compulsions that send me to the doctor, looking for someone who can make me safe. My pain is mental pain - yours physical. To me, they both suck and are so unfair.
Forgive me if I'm about to put my foot in my mouth - I don't diminish your possible need to have a child - I was fortunate enough to have one biologically; the other little darling was adopted from Korea. That was a long time ago - 27 years ago. To this day, I have absolutely no regrets and love her with all my heart.
I hope that today finds you better.
Take Care,
Dearest Flygirlsam, What we
Dearest Flygirlsam,
What we go through living a life with IC, is too complicated for anyone to understand. It's loaded with emotions, concerns, fears, pain...and vicious cycles of one thing ending, than another thing starting. Knowing you are not alone helps, but at the end you still need to go through the mix of emotions and physical pain alone. I was having serious relationship issues at the beginning of this year, and everything else combined with IC was weighing down on me too much to handle, so I started seeing a female therapist. I talk to her about everything now, my relationship troubles, personal growth, confidence, fears, my family & work. It really helps raise a big load off my shoulders everytime, and I get a lot to think about after. We have the sessions at her home, which is small, warm and welcoming with a cute little lovely garden you wait for to get you once her previous session is over. She is specialized in EMDR style theraphy, and herself dealing with chronic disease, i really connected with her. I've been seeing her for several months now, and i can't emphasize how grateful i am to have someone to talk to. At every meeting, i am learning more about myself, and also how to learn to love & accept myself and my body!!! One time, I went there i was so tense and tired so she asked for me to close my eyes and listen to my body. She asked what would my body tell me if it can speak to me now....I immediately burst into tears and told her my body was very upset and angry with me for not taking good care or it and neglegting it for so long. It was a pretty strong emotion that even surprised my therapist. I try to connect with my body, and to appreciate it for doing its best to support me through all the hardship i put it through. I try to remind myself that experience and enjoy that little moment where i felt peace was established. I understood that my body wasn't my enemy, trying to sabotage my life, and that i had to stop my bad habits and toxic thoughts. It's not an easy road to healing. But our inner peace and a strong core really will help. Kisses and hugs
Vent
Hi Sam
i just so wanted to reach out to you after reading this. My heart goes out to you. This path is a hard one to be forced onto and your words touched me deeply. I have been in treatment 20 months which have been hard and difficult with little change or improvement. I know you have been working so hard for much longer .
i know you will get there and I can Only say that I truly believe once you do, it won't be as hard or as painful and whilst being in company and joining in may never be easy, as it is for others, I do believe that it will be ok and possible. I am 40 this year and feel sad about children too as I am still so sick. I understand these emotions. I have also become too sick to work. It's tough!! I want to empathise but also offer strength and positivity to you right now. I know you will get there. I understand all that you are saying.
it sounds as though you are using this painful illness to help others and this is amazing. So few people can comprehend what we are going through and I have experienced similar social situations where I feel embarrassed, jealous, envious, or angry. Equally, I find over and over that people open up and want to get advice as soon as I mention chronic illness etc. it's amazing how many people actually are struggling themselves.
I hope that you feel a little better and that you can renew your strength and determination and faith. You WILL get there.
Xx
I
I know what you mean
about wanting to feel normal! This is so isolating and impossibly hard. I am so glad you are getting a little more sleep. I pray you will be able to look back on this time and be in a totally different place, with all of your dreams of family building come true!!!!
Sam, thank you for sharing your feelings. I am glad you can vent here!!
I am sure you think about this a lot. But have you and Dr. B talked about you taking a sabattical from work? Of course this is personal, emotional and financial, but you yourself have talked about how this has been hindering your progress. The subtle stress of work (and the extra environmental stress of your particular work) must play some part in all of this. Maybe you feel you can't for various reasons, but I figure anything is possible. It might mean some more personal sacrifices, but you are no stranger to that of late ;) Then you could keep your health mentoring at the hours that work for you and the rest is STRESS FREE!!!! At least for 3,4,5,6 months??
When I got sick I dropped my teaching gig immediately (granted it was not paying our bills). BUT it made a big difference in my stress level.
I hope I have not offended, it just seems like if one of us had a life-threatening illness, we WOULD quit work, and yet with this horrific condition, we manage to soldier on even when taking a break could really positively impact us. There, I had to say it.
(Hugs)
If we don't excel at health, the only other option is disease.
Sam, I second that. I do
Sam, I second that. I do think your stressful job is a big factor. You can probably work part time or go on disability, which will lock your position for a while. In both cases, the other side has no choice but accept your requirements for time off.
I hate to bring this up too
I hate to bring this up too but flying is known to be so hard on the body. The radiation alone is enough to throw the body off balance. I just read something about going through the body scanner at the airport only exposes us to 3 min. of the radiation we experience while in flight. Plus the stress of being a pilot must be enormous! It also does something to screw up our electrons. This can be helped by walking in dew covered grass or on the beach barefoot, it's called grounding. I spoke to Matia about it and she was very interested in it. I do hope you get some relief soon, I hate to see someone struggling for so long, my heart goes out to you.
Sam- I just wanted to give
Sam- I just wanted to give you a big (((((((hug)))))))) I can just relate with so many of your feelings. Hang in there- One day at a time...
Thanks everyone and I hear
Thanks everyone and I hear you loud and clear. I previously took a year and a half off flying when IC first began. That was before Matia, sadly. It is always in the back of my mind and of course there are loads of fears associated with taking a leave. The cut in pay would make it very hard to continue with matia and I would no longer be able to see my therapist who has been so helpful thus far. I need to research whether they will accept short term disability and pay claims out to us under Matia's care since she is not a regular MD. My biggest fear is having to go back to one of those wretched urologists. In order to get the leave I might have to do that but I obviously don't want to take the meds they will surely prescribe. I feel like it would be fraud then and that's another can of worms that would stress me out, knowing that I'm not being truthful. The airlines are tricky. There is no part time, it's full-time or disability, that's it. I can take a few days a month unpaid, which is what I have been doing, but obviously that hasn't been enough. It's also a huge pain in the butt to take any kind of medical leave from flying as the FAA gets involved and it's tricky to get your license back, but not impossible. I did it once before, but man it's a big red flag, hard for you guys to understand I know since you aren't in it. With all that said, I am definitely thinking it through, but hoping for any sign of improvement otherwise. We also just took out a big loan on our house. It sounds like a bad excuse I know, but it's for a remodel that I have been waiting 10 years to do. And it's finally happening and I am so thrilled (our current living situation causes me undue stress as it is due to the small size of our place and I ahve FINALLY gotten mu husband on board to add on and we are NOT turning this train around, lol). I wil move out for the construction and rent a place which means I can't leave my job until next summer at the earliest, even then it would be tough to pay the bills, but I know I can find a way. Until then, I just wish I would show some signs of real improvement. Anything. That would at least put the faith back in that I am on the right path. And would help me not want to cheat now and again!
I will talk with Lynn and see what they are accustomed to doing in the way of paperwork for work leaves. I just don't want to have to see any more MDs. If anything, I wanted to find a good holistic MD or naturopath to give me some thorough testing to figure out what kind of bacteria we are dealing with and if there is anything at all we are missing here. That was what I have been saving my money for.
Anyway, I'm going to broach the topic with my hubby and see if we can sit down and crunch the numbers to see if and when we could afford this. The irony, kind of, is that I was saving this "medical leave" for someday when I have a baby and I really want to be home past the standard maternity leave of 3 months. I figured then I would throw in the towel and say I was having a bad flare-up and needed a year off. But I guess I can only worry about today. Deir, as you say one day at a time. Alanon has been so helpful, at least that's free and I could continue with those meetings!
I dont know how any of you do
I dont know how any of you do it because I have only been dealing with this bladder stuff since May but for me it seems like an eternity.I did have two previous years of other issues due to a surgery mess-up which included bladder surgery so I have been dealing with pain, worry and fear for many years now. I have also been on very strict diets on and off since 2008. It all sucks.
Yesterday I broke down and had a suger free vanilla frappachino from Starbucks. Big NO NO. Luckly it did not effect my bladder at all but I know it is total junk stuff to put in my body.
I hear your frustration for sure and totally understand it. One thing I do know is how the mind affects the body. I work as a hypnotherapist and see it all the time. Staying postive is so important but I know it is also so hard.
Big hugs. It will get better. It will.
I am sorry to hear all that
I am sorry to hear all that Sam. I was ready to cry last night reading and replying to this post, and then, things shifted to dwelling about my own issues/feelings, etc. Why do we have so little protection while dealing with such a difficult situation? btw, I am having such a hard time deciding who I am going to vote for. Social protection/ medical help vs moral values and economy. But it was late, and I went to bed.
I hope your stress level gets down. Your therapist should help. May be you should see her more often? or do extra massage, etc to take care of your physical and emotional needs? You should not be asked to carry a full load of responsibilities on your shoulders while trying to recover from IC. You deserve a break; if not, plan your activities extra carefully to avoid stress, and of course, pumper yourself with positive, healing experiences.
Hi Sam, I read this post the
Hi Sam,
I read this post the other day and have been thinking of you lots. I hope you're doing a bit better by now! I think we have all had those meltdowns like you describe and it must be so hard to continue to have faith when you aren't seeing a lot of progress. Today at work (I currently bake at a gluten-free bakery), my coworker was joking that if I was going to die tomorrow, I'd have to try this new dessert that I baked yesterday because it's the BEST thing she's ever tasted (blah, blah, blah) and part of me laughs and part of me cries. Because what you said is so true, it'd be so nice to just be NORMAL for once and have a bite of something "forbidden". It does feel like the vigilance required by IC is so, so exhausting and at times demoralizing.
I also wanted to echo what other people have been saying about stressful work situations and symptoms. This current round of IC has been going on for 3 years for me. For the first year, I was teaching at a public school in NYC and it was very stressful. Sometimes my bladder would be burning so badly that I thought I would just melt down in front of the kids, but I couldn't. It took a lot of guts for me to leave- at first I took a leave of absence, and then after the first year, I just decided to not return. It's been difficult to reorient to a more calm lifestyle and to not have an identity tied to a career, but I think it is a big, big part of what is enabling me to heal. I get stressed about not having money and trying to figure out my next career move as I'm becoming more and more able to work full-time, but I figure it'll come. My health is worth more than an identity and money. I hope for you that you can find a way to take some time off or just be able to work a little less. I think it has made a huge difference for me.
Claire