08 July, 2013

Friends?

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Welp, hey guys.

I suppose it's time for a disclaimer. If you tend to be kind of mean or gossipy, or if you are a perv, please find it in your heart to stop reading this post. 

That about covers it, right?

So I want to write about something two other people in the world know about - and that is that I have a really annoying, painful, but not deadly-or-anything-like-that condition called Interstitial Cystitis. Read about what it is here and here. The second link describes the pain as closely as anything I've ever read (albeit with atrocious grammar and some disturbing imagery, but jeez Brooke, stop it.)

Anyway, I was officially diagnosed in December of 2008 though I have had symptoms since I was a little girl. Over the years I've had lots of highs and lows - sometimes it will disappear for months at a time, other times, like now, I'll have flare-ups that last up to several months. Because this condition can be so very traumatic to my body, my pelvic floor muscles tend to tighten up to the point of awful pain and can only be released through physical therapy. So in case you're wondering why we wanted to name a baby after someone named "Kelly", now you know ;) She was my physical therapist last year. From February to May, she made an enormous difference in both my body and my attitude. Love her.

So you may be asking yourself, "Why are you telling the world about this?" Good question. I don't really know, except that I woke up today with that quote by CS Lewis on my mind and thought, "I'm probably the only twenty-something-year-old with this old lady disease." Then I thought, "No way. There is no way." Then I thought, "There is one way to find out..." And then I thought, "The likelihood of Ryan Reynolds going on TV to tell my story and find out if there's anyone else out there like me is not very likely" ;)... but really. The blog! You know?

So here's the sitch. I am so tired of IC. I am so ready for a normal life! I can't stand the pain or the loneliness or the expenses. I am tired of always feeling distracted because of pain and discomfort. Anyone else feel this way? Look, if you know me, you know my life is active, fun, normal. But I go through periods where I never feel present, not really. I hate that so many memories are clouded by me running to the bathroom to cry in between rounds of card games with family, or laying down in the car on camping trips while everyone else is making s'mores, begging my body to relax and work with me so that I can go be part of it, too. Or feeling so guilty for a snappy response, made hastily in a moment of intense pain and then trying to apologize but not being able to fully explain myself because this has been a close-kept secret.

So this is where you come in. I just started the elimination diet yesterday and have so far not felt much relief at all, but I'm hopeful. Also, in a few months I think I will start Elmiron. In about a month I'm scheduled to see a physical therapist in this area who specializes in women's health. That's my action plan, and boy howdy, I hope everything goes right. (If you take Elmiron, would you mind telling me about it? Has it helped you? Any freaky side effects?)

In the meantime, do you have any advice? IC sufferer or not, I think every woman (and man?) has had pelvic pain at some point. Hey, or just chronic pain. How do you smile through it? I have kept this a secret for so long, that I've learned to cope really well with my own strategies, but it also makes me so very tired. I need fresh ideas, hope and that friendship that CS Lewis is talking about. "What! You too?" Oh my heck, if you're saying that right now while you're reading this post then it's all worth it. Let's be friends.

21 comments:

  1. I don't have any sort of illness to really relate with you, but I'm so sorry for your pain. If nothing else, know I'm thinking about you and praying.

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    1. Thank you so much for your comment and for your prayers, Rachel!

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  2. You are one of the sweetest, cheerfullest (is that word? :), people I have ever met. I'm so sorry you have to deal with so much: based on the links you posted it sounds completely miserable!! Even though you haven't been in the ward long, know you have lots of friends here and we'd all love to do anything we could to help make life a little bit easier. *HUGS*

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    1. Oh Melissa, I love you! Thank you so much!

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  3. First off, I'm writing as "anonymous" as nobody knows what I'm going through except my husband. It's not fair to write to the blogging world if I haven't told at least my mom.
    That being said, I do not not have IC; I'm so sorry though for your pain.
    For the last year, I've been tested for every little thing with no answers. No one can tell me why my vision is messed up or why I have all these other crazy symptoms. Some doctors even recommend no more children... arrow to the heart. I've had more MRI's than I can remember (which is probably a good thing) and I can't remember all the other letter tests I've had (ie CT scan). The only thing they know is my brain is effected. (not bad yet)
    That being said, I smile because of this quote:
    In my ninety plus years, I have learned a secret. I have learned that when good men and good women face challenges with optimism, things will always work out! Truly, things always work out. Despite how difficult circumstances may look at the moment, those who have faith and move forward with a happy spirit will find that things will always work out. Gordon B. HInckley
    So I try to focus on the positive, all the things I can do... but do allow myself to fall apart when the time is right...
    I pray you find friends who are going through what you are; you are so very brave.

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    1. My heart breaks for you, anonymous, and for Brooke, and for everyone with chronic anything. I feel especially bad for those who don't have any answers - either no diagnosis, or no solution with a diagnosis. I'd love to talk with you about some thoughts I have if you're interested. You can contact me through my blog email. Sweet thoughts for you, for Brooke and for all the strong women out there who smile on top of it all.

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    2. I was going to say that you might want to talk to someone with MS - (my mom is the one who replied above and she had MS for a long time). Sometimes people who have MS symptoms go undiagnosed for a long time. just an idea. Thanks so much for your comment. I hope that you'll find your answers soon. And I love that quote by President Hinckley, too.

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  4. Brooke I can't believe it! I can't believe you've had to put up with this for so longg...really, since you were a little girl?! I wish I could say "me too" and help you out, but I can't :/ I do know that sometimes things like this seem so unfair at the time, but when you look back on it you realize something you learned from it or something and it makes it all worth it. Or at least a little bit worth it? Good luck with that diet and the physical therapy!

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    1. You're definitely right, I've learned a lot from this. I just hope that I start learning enough that it can go away ;)

      Thank you!

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  5. Hope you are able to find others who are going through similar struggles. So sorry for the pain and discomfort that this brings.

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  6. Brooke, I have never commented before and honestly don't remember how I found your blog (but it doesn't matter because I love it!). This post compelled me to break my vow of voyerism. My husband has suffered from a chronic Gastrointestinal disease since he was 14 (he is almost 43). While it can be very hard and isolating, having a great support system with family and friends who understand when he isn't up to getting together or when we show up late to events, or when our daughter and I have to go on with out him. Don't be afraid to share that part of yourself with those closest to you. Keeping a positive attitude about the situation (as much as it sucks) helps combat the feelings of loneliness and isolation. I have also found it a good way to help teach our daughter patience (lord does she need patience) and compassion for others. :) I don't know if my words are coming across as I want them to, but I hope you get some sense of what I am trying to convey. Keep your head up sweets. You have an army ready to give you positive thoughts.

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    1. Thank you so much, Jennifer! I'm glad to know you (sort of) now!

      Your husband is lucky to have such an understanding spouse! I know from experience that it can be SO HARD to have to sit things out while your family goes on without you, but I also know how hard it can be to have to just go without the one you love. THanks for your comment. I feel like you're absolutely right that attitude makes all the difference. Thanks for coming out of the dark to share :) Hope to hear from you more soon!

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  7. Oh Brooke, I'm so sorry you have to deal with this. Physical ailments are horrible! I have cronic back pain and it's really no fun at all - especially since it's something others can't see. I really hope the game plan you have for treatment helps you out tremendously!

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    1. Thanks Susannah! And I'm sorry for your back pain.

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  8. Brooke, how courageous of you. Although I've never suffered from IC, I have such empathy for you. I have had back issues for years, which during pregnancies heightened ten-fold. It was awful to not only be in pain and on top of that deal with being kicked from the inside, and trying to cope with contractions. Some days were really difficult and I loathed the women who would say, "oh, I just LOVED every second of being pregnant." Really?? I could only dream of a pain free pregnancy. It can be challenging to suffer through real physical pain and not be able to get any sort of relief. I hope that you always remember your loving Savior, that even if He can't take away the physical pain that He knows what you're going through. And I'm glad that you have Steven and supportive loving familymembers, but more than anything I've found great relief in having a few select true friends who I can vent a little to here and there when I'm down. I find that that having that little outlet, whether it's physical or emotional pain, is so VERY vital. And sometimes having someone just listen makes a world of difference on an especially difficult day.
    Sending you love and positive vibes. <3

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    1. Hey Kati!

      I had no idea you had back problems. I can imagine that pregnancy would just be horrid with that kind of issue. You are brave!

      And you're absolutely right, I do need to rely on the Savior and on my family. Thanks so much for your comment! It is so comforting to feel understood.

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  9. THanks for sharing your secret struggles with us. In dealing with chronic pain I have found holistic approaches to work best for me. Yoga, chiro, meditation, vitamins, etc. Attitudes shift, some control and understanding is gained, and I have always found a community of like minded people in alternative approaches that have been a great support team (no judging or telling me I"m doing it wrong, just love and trust in my intuition for MY journey). I have also found that finding on-line support w/yahoo groups or the like are terrific for finding "friends" and broadening my resources.

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    1. Hey Anonymous! Thanks for commenting. A few weeks ago I went to the local health store and started some different supplements that (I think) are starting to help. I love what you said about "some control" - that's the worst part of pain, I think, feeling out of control. But I love that you have been able to find some through this approach. I'm inspired. Thank you so much!

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  10. Brooke, I had no idea... but, thinking back now, I remember times you didn't feel good and had abdonimal pain and chose to "sit out." I am glad you figured out what it is, but I am so sorry you've had to struggle with it all these years and most especially sad that you've had to carry this secret around with you. I know it doesn't help the actual pain you will feel, but I know it must feel good to not have to carry the burden of the fact of it around alone. I am not as brave as you, and not ready to talk about various physical issues on my blog, or yours, though I would probably tell you in person. Though what I've suffered is in no way on the same scale, I can relate to a degree. Part of what has helped me is, in knowing that very few people know about this issue for me, I've realized how very little I know about other people's pains and struggles. In our world where so much is public information, there's still a chunk that's private -- "sorrows that the eye can't see" -- and though it's not fun to imagine what terrible things other people might be having to deal with, it helps to know that I am not the only one out there who is not physically perfect and whose appearance might fool you ;) Some things I will divulge, my sentiments exactly with the CS Lewis quote, is that I have "prematurely receeding gums" which may require surgery(they say from brushing too hard!) and my hair has thinned in the last few years and knee issues that make it hard to run or hike, talk about old lady!! When I get down on myself about these things, and this other thing I don't want to go into, I make myself start listing all the things on my body that work just great and have no issues and gratitude floods in and replaces the mental grumbling. But, then I have to think, even if I couldn't see, hear, I had no hands, no legs, no hair, no ears, etc. etc. okay, I'll stop, now I'm just laughing, (it doesn't need to be that extreme) even then-- like was said above in the Hinkley quote-- it would be okay. I could reach out for the savior and he would be there. I send strength to you Brooke. That's a real bummer.

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    1. Hey Michaela!!! Reading your comment made me just want to grab you in a bear hug. Thank you so much for your understanding!

      You are SO RIGHT about the "sorrows that they eye can't see" - secret pain/trials is probably the biggest learning tool for in learning compassion.

      You are one of the healthiest looking people I know, and you're always having adventures, so I had no idea that you were anything less than Alpha-Human :), but it helps to know that you're going through physical stuff too and can still be so active and normal and fun. Thanks for inspiring me :) Thanks for your testimony too, I love you! Can't wait to see you next month!

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