Thursday, October 10, 2013

The Battle IC

Hello blogging world. It has been awhile. It seems that I tend to go blogging crazy for a week or so, and then I get distracted with the busyness of life. Today I had a thought though. I really do need to blog more, it really is my sort of online journal. It is my time to get my emotions out so that I can still function. Life has it's way of throwing curve balls at us, and sometimes I just need to vent to the computer screen in hopes that somewhere out there, you are listening and can give me something to help boost me back up. Today is one of those days.

One of the reasons I haven't blogged in a little over a month, is that I have had family visiting, which is always nice. During the month of September my mom and my aunt came for a visit, but both at separate times. Anyway, right in the middle of their visits, I found out that I have this rare condition that has frankly turned my world upside down. Before I get into it all, just know that it has consumed a lot of my thoughts and computer time, making it quite difficult to have time to blog. Anyway, enough apologies. Just know that I want to be more consistent, and if you make it through this whole post, I could use your love, support and prayers.

Alright so here goes. Since early on in our marriage I have been experiencing some womanly pains. They have come and gone, and let's be honest, the woman's body can be quite difficult sometimes, so mostly I just ignored the pains. Early in our marriage, when I was really concerned about the pains, I went and saw an OB and she basically made me feel like it was all in my head. So I just ignored it. It seemed that whenever I was pregnant the pains would die down. Well, since before Jacob was born, I have had pretty consistent pains. When we moved to American Fork, Scott and I decided it was time to find some answers and that I had suffered too long. So I began searching for a new OB. I really wanted to find and OB who was female, which always makes the search a little harder. Since there was only one female OB in the area, the office I called recommended I start by seeing a PA. After two visits with her, I felt like we were getting no where and the pain just seemed to get worse and worse.

Then one day, it hit me. I wasn't just having period like cramps and pain during intimacy, I was also experiencing pain when urinating and it even hurt to wipe. The thought came to me that maybe my symptoms were more like a UTI. As I talked to Scott, we agreed that we should call his mom, Diane, since she works at a urology clinic. So we called her up that night, and as I described the pains I had been having, she felt very strongly that she knew what was wrong. She set up an appointment with one of the doctors at her office for the next day.

To be honest, as we went in, I wasn't sure it was a urological problem. I just wanted some kind of answers. I had been to see a PA twice, and had an appointment set up to see an OB in a few weeks. It just seemed like they had no clue what the problem could be, and if it was a UTI or something like it, I just wanted to know, so I could find some healing. Well, as I sat in the office talking to the doctor, I got the sense that he didn't think it was urological either. I don't think he really thought he would find anything. But, he could see my concern and Diane's concern. So he decided to do a scope up my bladder to see if he could find anything. And find he did! But before I get to that, I must tell you about the process and how I felt.

You may have noticed that I mentioned how important it was for me to have a female OB. Well that mainly stems from some abuse I had as a child from someone who was male and in the medical field. Since that time, I have only had female doctors. Anyway, we went into the appointment not thinking he would have time to do a scope. Well, when he said he could do it, I practically had a panic attack while waiting for them to get the room set up. I knew he would be safe enough to trust, but frankly, it was all so scary.

Luckily, Diane was great. She reminded me that he was a good man, and that she would be there to hold my hand the whole time, if I wanted. And she did. I didn't realize how painful that procedure was. So it was great to have her there. And the doctor really was great. It was more about overcoming my fear than anything else.

Anyway, as he did the scope, he was shocked to see the amount of scarring that he did find on my bladder. He said that he usually has to put someone under anesthetics to see that much scaring. He also said that Diane correctly diagnosed me (over the phone even)! So what's the bottom line? Well, the lining of my bladder is breaking down. I have a rare condition called Interstitial Cystitis, or IC. And it has changed my whole world. The sad part is they don't know the cause of this condition or the cure. They have some medications that can help, and some days they work and some days they don't. The big change is that you have to cut out a ton of foods from your diet. Basically, because my bladder doesn't have as much of that protective lining, the more acidic and flavorful the food, the more pain I experience.

So I thought it might be fun to show you with pictures some of the foods I am missing the most:


One of the hardest things I have had to live without as of late, is tomatoes. Now I get it, there are a ton of tomato haters out there, but seriously, tomatoes are amazing! And the reality is, I never realized how much I love tomatoes and all of the yummy things that they are in. Of course I love tomatoes in my salad and on sandwiches, but the hardest things are what tomatoes can be made into. Of course ketchup is a sad thing to lose. I once saw this shirt that said, "I put ketchup on my ketchup." I always wanted to get that shirt, but never did. It so defined me, I just LOVE ketchup and it is hard to imagine a chicken sandwich or a burger without ketchup. Even harder is to have life without spaghetti sauce. Spaghetti has always been one of my absolute favorite foods. As of about six months ago, I have started making my own spaghetti sauce packed with TONS of other veggies. Alexander just wont eat veggies, so it was my way of getting some veggies in his system. I had perfected the sauce, and now I still have three bags of frozen sauce in the freezer that I can't even eat. I had gotten so good that I actually pureed the veggies into a sauce so he couldn't tell all that yummy stuff he was eating. Anyway, since being diagnosed with IC, I have tried several tomato sauce wannabe recipes, but they all seem to lack one thing. And tonight, I think I figured out what that one thing is...tomatoes. Alas, my life will not be the same without them. On the bright side, we are still enjoying alfredo and have started making pesto pizzas.


So, as mentioned before, anything with a high acidic content is out; hence no tomatoes. Well, when I first heard this, I got that I couldn't have things like lemons and oranges. It wasn't until I started reading the list that I realized how few fruits I was able to have. My very most favorite fruit is strawberries, and they are out. So many fruits are out that I will just give you the list that is in: blueberries, pears, gala apples and watermelon. Those are all yummy fruits, but I will greatly miss my strawberries, peaches, pineapple, grapes, oranges and bananas.


Okay, so obviously the high acid fruits are out of the picture, but it surprised me that I basically can't have any juices. The only juices allowed are pear juice and blueberry juice. And unfortunately they cost mondo bucks at the health food stores. We bought a small container of blueberry juice for $11. The problem is that almost every juice contains grape or apple juice in it, so we had to get the pure and all natural. I tried the blueberry juice and wasn't a huge fan. So far, we haven't been able to find pear juice. Luckily, I canned a whole bunch of pears after discovering that I have IC, so I am at least enjoying the pear syrup.



Okay, so no juice? Fine. I guess I will have to live without it, but at least there are other flavored things I can drink, right? Wrong. Carbonated beverages are also out. And if I were a coffee drinker or drank an occasional glass of wine, they would be out too (not missing out much there though). Now don't get me wrong, before getting diagnosed, I was primarily a water drinker anyway. But once or twice a day, it was nice to have a flavored beverage. And sometimes, when I had a stomach ache, it was nice to have a good sprite to make me feel all better. And I do love my root beer. It instantly made me think back to when I was pregnant with Alexander and everything made me sick. I lived on sprite, crackers and trail mix for the first few months of pregnancy with him. Even water made me sick. Hopefully, I don't ever have to go through that again. Anyway, my choices for beverages really are just milk and water, and since I don't drink milk, it's water. I do feel healthier without those beverages, but I miss them.


Okay, so one of the other hard things to live without is condiments. Basically I can't have vinegar or mayo, hence the no condiments. No ketchup, mustard, etc. No dressings. Luckily I did find a homemade ranch dressing recipe that uses cottage cheese and yogurt as a base. It doesn't really taste like ranch, but it is still pretty good, and better than missing out on it all together. The hard part is when you have that occasional desire to eat out and can't have any condiments or flavoring at all. Most of the spices are to be avoided as well. And of course most preservatives. I am discovering that ascorbic acid is in almost anything processed, and that is a big one to avoid. So eating out is kind of pointless. They want me to avoid chinese food, mexican food, thai food and anything with spices. I am trying to become creative though, and look for new recipes. Last week I actually found a recipe for making granola bars and ended up making my own with dried blueberries, sunflower seeds, and oatmeal. They ended up turning out really yummy. Next time I will experiment and add a few other fun things, but I wanted to keep my first batch pretty simple. So slowly, I will conquer this challenge!


Chocolate is by far the hardest thing I have had to give up. I love chocolate. Always have and I always will. I love chocolate so much that I have made pumpkin chocolate chip cookies and chocolate chip banana muffins. I love it so much that I have my own little baking jar that sits with the sugar and flour just for chocolate chips. There are days, that I am exhausted from having two children under two, and still trying to figure out how to get children to sleep through the night, that I would just enjoy a handful of chocolate chips in the middle of the day. Well, chocolate is out. And parting is such sweet sorrow. All I can hear is Brian Reegan in the background saying, "No more happiness." (If you haven't seen his skit on how the doctor told him to lay off dairy, you should look it up, it is hilarious!) Anyway, I can say that I haven't cheated once with the no chocolate thing, but I sure have been tempted.

Well, there you have it. I have this crazy bladder condition called IC and it is tough. I have to give up lots of yummy foods and take medications that may or may not help since they don't know what causes it or how to cure it. Some days, I am quite hopeful. I feel like it will help our whole family eat healthier and that I can control it with the diet alone. Other days, I feel in so much pain that I am on the couch in tears (which by the way, I am pretty sure IC is what caused a HUGE amount of pain while I was pregnant with Jacob). Some days, I am ready to conquer this weird diet and keep adding to my homemade cookbook. Other days, I remember that I have never in my life EVER been on a diet and would tell dieters, "Do you know what the root word of diet is? Die! Because that's what it makes you wanna do!" And then I wonder how I will ever live the rest of my days without some of these yummy foods. It is about that moment, when I take a deep breath and remind myself, "Get a grip. It's not cancer." Well, the night is late. Thank you for making it this far and letting me vent. You are a true friend. Tune in next time for Amazing August.

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