For the Rest of My Life

My cystoscopy with hyrdodilation went well. Got to have some alone time with my husband and the next morning I was out shopping at Jo-Anns with my mom. I experienced the normal slowness in trying to urinate while my bladder was waking up and legs wearing out a little bit faster than the normally would. I did experience one side effect that I wasn't expecting. Don't know what medicine made it happen but the way food tasted in my mouth changed significantly. Stuff that was supposed to be sweet tasted bland and food that was supposed to be savoring tasted EXTREMELY salty. Example: My family, my mom and I went out to Ruby Tuesdays. I was very excited to get there salad bar and a steak with mashed potatoes. I could only get through half of my salad because the dressing (an Asian vinaigrette) tasted so salty I couldn't eat it. The same was to be said for my perfectly cooked steak. I was very sad because when I gave a bite to both my husband an mom they said it tasted perfect, and they would gladly eat it if I didn't want it. But, I wasn't going to give up my food so easily. I waited until Sunday night and ate my leftovers. It was delicious!

Now I've had my post-op appointment with my urologist. That was interesting. One of the first things he said to me was "Well the good news is that you have a big bladder and it can hold a lot." Ok, that's good. Then he said "However the lining of your bladder had some discolorations." (I think he called them glomerulations) "I've never seen that before." Well that didn't make me feel very good about myself. Of course, I couldn't be a normal case. Nope I had to be one of the anomalies.

My doctor also told me that I would be a good candidate for Elmiron. Has anybody ever used that? What was your experience. Did you experience any side effects. I was concerned that it was going to cost a lot of money, but thankfully our insurance is going to cover a big chunk of it. Now my only concern is that I don't want to be on a pill the rest of my life. When I was reading the Elmiron sight they said most patients had to take Elmiron for 3-6 months. However, when I talked to my doctor he said that the dose my decrease, but I'd likely be on the pill the rest of my life.

So that's where I'm at right now. Once again figuring out the best course of action for my disease and praying for direction. 

Postponed

Just a quick update here.....

Last week my youngest son was oh so kind to share his cold with me. By Saturday I had no voice, could barely whisper. And all the while I've been hacking up green phlegm. When I told the nurse this today during my pre-op phone interview she said that I needed to call my doctor and see if he thought I would need to get on antibiotics or if we would need to reschedule the surgery. Well, he called back and said we are going to postpone the surgery until next week. So, next Friday is the new date for my surgery. And tomorrow I'm going to my family doctor so that, hopefully, she can help me get better so I don't need to reschedule yet again.

And the Verdict Is...

SURGERY.....now don't worry. It's not a big surgery. Just my urologist thinks the best way to start my treatment is to find out exactly what he's dealing with. So, on Friday I'm going to get knocked out (did I mention the way anesthesia puts me to sleep?) and they're going to going to see how big or little my bladder is, see if there's any lesions or ulcers and distend my bladder to see what's going on.

I'm really not nervous about it. Although I am concerned that right now I have a cold and if it's not gone by Tuesday when I have my pre-op phone interview I think we will have to re-schedule the surgery. I really don't want to re-schedule it. I've already started planning with my family and am very much looking forward to being pampered for a day. ;)

He also suggested physical therapy. He said that that would help relax the pelvic floor muscles and therefore alleviate some of the pain. Anybody ever done physical therapy for IC? Was it successful? If it did work, did it take a long time? Just wondering if it's worth spending the money on.

And She's Off....

Tomorrow it all starts. I am going to a new urologist. Haven't been to one since before my youngest son was born. He's almost 3. Actually, it was a year before he was born so it's been a while. I always get so nervous before I go the doctor when I'm not actually "sick". Although truth be told, the last time I went to the urologist he told me about Prelief and that has been my savior so many times since then. It's just that all these doubts come creeping into my head, like maybe he's going to tell me all this bad news.

I thought I was getting an out tonight when my youngest developed a fever. But my husband, wonderful, considerate and practical man that he is, reminded me that it took me almost 2 months to get this appointment. He also assured me that if our son's fever still continued tomorrow he would figure out some way to stay home from work and watch him. I do have a babysitter lined up, but she has two children at home with her and I wouldn't feel comfortable taking a possibly sick child over to her house and then one/both of her children catching something from him.

I don't know what tomorrow is going to bring. If you think of me at 11:00 say a prayer for me. I'm trying to keep my mind off the appointment and am afraid that the closer I get to the time the more nervous I'm going to get. Praying that God will calm my nerves and give me the clarity of mind to tell the doctor what he needs to know to give me the best treatment possible. :)

Writing a blog can be a very narcissistic thing. It's basically you writing about yourself and waiting for people to comment about thoughts that go through your head. Every once in a while I will get on my blogger dashboard and see how many people are viewing my blog and when there is a spike in those views occurring. Today when I viewed my dashboard I saw that not only have people close to me viewed the page, but also somebody in Alaska and in the United Kingdom! That floored and humbled me. I have always said my goal in writing this blog is to educate people about my IC and hopefully encourage them in the process. Well, you all have just encouraged me. Thank you so much for taking time out of your day to read my thoughts. It is appreciated.

F*L*A*R*E

Part of me has always wanted to write one of my blog posts while in the middle of a flare up. Then the other part of me doesn't think anybody would want to read about that. Well, I am going to write about what a flare feels like for me, but (good news) I am not in the middle of one right now. Turns out I have NO desire to write about what a flare up feels like when I'm going through one. I guess it would be like asking a woman in labor to type out what her experience is like while she's going through it. Not gonna happen.

One thing that you must know about a flare is that everybody who has IC gets them at some point, but not that many are the same. Another is as much as you try to avoid "triggers" (things that can cause a flare) sometimes there is nothing you can do to keep one from creeping, no not creeping. popping up on you.

I'm going to warn you right now. This is going to descriptive, and I'm sorry if it is too much information for you guys, but I feel the best way that I can help other people out there suffering with IC is to be as honest as I can. Even if it might make me, or my readers, a little uncomfortable. So here it is, what brings on a flare, what my symptoms are, and what it feels like for me.  I've already discussed some of the things that can bring on a flare for me, but the biggest thing is constipation. When I have a flare I am literally sitting on the toilet (told you it might be TMI), with a rolled up towel pressed against my stomach in an attempt to provide a little bit of comfort and relaxation, trying to get everything out of my intestines, because at this point in the flare my pain is at least an 8 if not a 9 or a 10. Once I have gotten everything out of my body that I can the pain takes a significant drop. And if I'm around a shower or a heating pad I can get the pain down to a 6 within an hour or so. At least that is the case normally. As with all IC symptoms there are exceptions to the rule. Another part of a flare up is bloating, hence why I am so attached to my ultra loose, ultra comfortable MSU workout pants. They are cute enough that I can wear them in public if an outing (such as getting my son from school) cannot be helped, but comfy enough that I can lounge in them all day at home.

So that is what a flare up is like for me. When I feel it coming I grab some water, a towel, a book, figure out where the fastest route is to the best heat source, take a seat and breathe. Thankfully this is one thing that a woman in labor and I have in common. It is important to remember to breathe. JUST BREATHE. It really does help with the pain!

P.S. A few weeks ago in an event that can only be described as God-sent I had an idea that with blueberry season winding down I needed to start taking fiber pills. And as much as I hate to choke down 5 horse pills two times a day, it did make these last few weeks bearable and moved the flare ups which at this time in my hormone schedule normally would have been occurring daily (even hourly) to only occurring one, MAYBE two, times a week.

Picking the Petals off the Flower

        I like you, I like you not. I like you, I like you not. No I'm not talking about a person in my life. I'm talking about Sundays. Recently, one of my friends said to me "It seems like you feel bad every Sunday!" Sadly, she was right. But it's not that Sunday is any special day. It's just a day that I'm out in public, on a set schedule, and not wearing my oh-so-comfortable MSU sweatpants (sorry to all of you UofM people out there). You would think that having a schedule would make you feel less worried and therefore relaxed, but in the world of IC that is not the case. To have a schedule adds stress, and when you add stress it's like adding a flame under a pot of water. It'll just keep heating up and rumbling until it eventually boils over. And it's not that this doesn't happen any other day, it's just that on Sundays I am not in my house all by myself and able to deal with it like I normally do. And I just never know on any given Sunday what level of pain, if any, there is going to be.

        Why do I keep subjecting myself to this unknown week after week? Because I get to talk to other adults. Because I get to, hopefully, encourage others. Because I love getting to teach the little kids about the Bible. And because I love being able to worship God and delve into the Bible with other believers. I may have to take a nap when I get home, or I may have to sit in the back in the comfortable chairs because the pews are making the pain worse, but I will keep going to, serving at, worshiping in and enjoying church on Sundays. I love the group of believers that God has placed us with right now, and I would never put more stress on somebody else by "calling in sick" because that would not be fair to them. And I would miss them all too much. Even though it can cause me pain to step out from my norm it is such an encouragement to see all those smiling faces every week. So I will continue to go every week, hoping that I will not only get encouragement but be an encouragement to someone myself.

Let's define this thing....

Interstitial cystitis (in-tur-STISH-ul sis-TI-tis) is a chronic condition characterized by a combination of uncomfortable bladder pressure, bladder pain and sometimes pain in your pelvis, which can range from mild burning or discomfort to severe pain.

While interstitial cystitis — also called painful bladder syndrome — can affect children and men, most of those affected are women. Interstitial cystitis can have a long-lasting adverse effect on your quality of life.

The severity of symptoms caused by interstitial cystitis often fluctuates, and some people may experience periods of remission. Although there's no treatment that reliably eliminates interstitial cystitis, a variety of medications and other therapies offer relief. 

Now that you know the Mayo Clinic's definition I'll tell you a little bit about me. The purpose of this blog is to be informative and encouraging. Informative to those who have friends or loved ones who also have this disease. Encouraging to those with IC; hoping that they will find here someone who is going through the same trials they are who they can learn from and go away blessed.

I am a wife, mother and homemaker. Wife to my wonderful husband, Christopher. Mother to two boys, Joe and Nathan. I spend most of my days at home cooking and cleaning, and recently, as if I didn't have enough on my plate I also returned back to college this semester get my degree in photography. I also have one more thing on my plate. This thing consumes a great deal of my time, causes me to have to cancel plans with friends and family and makes me very tired. Now some of you may be thinking "Man if I had something like that in my life, I would cut it out." And normally I would be forced to agree with you. Unfortunately, the thing that I'm referring to is my lovely friend Interstitial Cystitis (hereon referred to as IC, mainly because I don't feel like typing that whole word out).

The day to day of IC is different, but the same. On any given day I can have any or all of these symptoms. (I apologize in advance if this is too much information for some of you, but I'm trying to be honest here.) Pain while urinating, pelvic pain, pain in my kidneys, bloating, constipation, nausea, fatigue and, the biggest one, pain in my bladder. Truthfully, I should say stomach pain because after a while of my bladder hurting my whole stomach gets tight and starts hurting.

How do I deal with these symptoms? Naps, when I can fit them in, mints for the nausea (we have a huge bag of them from Sam's Club), Prelief to try and keep the acid in foods from bothering me, and lots and lots of pain killers. The strength of them (whether it be Ibuprofen or Vicodin) is determined by where I'm at on the pain scale. And that brings to the best friend of somebody with IC. The all important PAIN SCALE. You know, when the doctor asks you "Tell me where your pain is at on a scale of 1-10?" My pain changes from day to day and hour to hour. If my pain is at a 0-3 then, actually lets not talk about that 'cause it's barely ever at a 0-3. If it's 4-6, I'm functional. Give me a couple of low dose Ibuprofen's and a heating pad I'm able to keep a smile on my face and get on with my day. A 7-8 is a big Ibuprofen (like 800 mg) another round with the heating pad, a short nap and postponing my plans for later on in the day. A 9-10 is excruciating! For all you ladies out there, it's I've been in labor for 7 hours already and here comes another contraction, sort of a pain. This usually requires the taking of a Vicodin, and all day spent in the bed, only to be broken up by a few very long, very hot showers (forgot to tell you how MUCH that helps) to help relax of all my very tight muscles and ease the pain. Thankfully, most of my days are spent in the the 4-7 range. However, on the occasion that a 9 or 10 day comes along, all plans are immediately cancelled for that day and probably the next.

There is one more thing that helps me get through the craziness that can be IC. The biggest thing that helps me to feel like I will be able to breathe through the pain and not go stir crazy. God, He is the one who I can turn to when I cannot explain to anyone what is happening in my body at that moment. He is the one who never gets sick of hearing me talk to Him about how I'm sick of the pain in my body. He is the one who will send along just the right person to be just the right encouragement at just the right time. He is the one who gives me the strength I need to get through each day, and the one that I can't wait to meet someday with a new Heavenly body! I cannot imagine trying to go through this without Him and without the support system of my family and friends that He has placed in my life. He is my rock and I'm so thankful he's in my life!!

So that's me! Out there for all of you to read about. I hope you have been informed and encouraged.