Living with IC--Interstitial Cystitis

I love the "On This Day"  feature on Facebook.  I love looking back to the funny things the kids have said or done that I had forgotten.  Today this memory popped up:  

6 years ago today:

"About to get ready for an outpatient diagnostic surgery under general anesthesia. Prayers appreciated!"

My pregnancy with Michael was hard.  We almost lost him at around 12 weeks.  At my 6 week checkup I was diagnosed with high blood pressure.  It took months on blood pressure medication for my blood pressure to finally regulate itself.  Around that same time I started having symptoms that felt like a bad UTI or bladder infection.  I went to two different doctors before doing some research online to find out what was going on with me.  I happened upon a website that described what was happening to me---IC or Interstitial Cystitis.  I didn't even know how to pronounce it!  

What is IC?

"Interstitial Cystitis is a chronic bladder condition affecting 4 to 12 million people in the US. We often say that interstitial cystitis is as hard to say as it is to live with. Trouble saying interstitial cystitis? It is also called IC, painful bladder syndrome (PBS), bladder pain syndrome (BPS), and chronic pelvic pain (CPP)."  --Interstitial Cystitis Association 

I decided to try a different urology practice and happened upon a doctor that specialized in IC.  I made an appointment right away.   He thought from my symptoms that I should do the diagnostic test to confirm IC--a cystoscopy with hydrodistention.  That happened 6 years ago today.  The test also has therapeutic benefits and is used quite frequently as a treatment option for those with IC.  Unfortunately, it made my symptoms worse for at least 1 to 3 weeks afterwards.  So much so that I decided unless I got extremely worse, I wouldn't have the procedure done again.  After the procedure, the doctor confirmed that I had Hunner's ulcers (patches) which is a clear indication of IC.  

Sometimes, the cystoscopy with hydrodistention will put IC patients into "remission".  Not true in my  case.  So, I had regular appointments with the urologist, who suggested more than once that I go on a new drug that was proving to be successful in some IC patients, Elmiron.  Once I read the side effects, I knew I would not be starting on this treatment.  I asked him if I could just put myself in remission through lifestyle changes and he reluctantly admitted that it was a "possibility."  He told me about an over-the-counter dietary supplement I could take if I was eating something I knew could bother me called Prelief.

So using the IC website, I decided I would try lifestyle changes before I would do any more procedures or take medication.  At first, everything bothered me.  So, I made drastic changes, but over the years I've been able mostly successful in using lifestyle changes to regulate my symptoms.  I still have BAD days especially around my monthly menstrual cycle or hormonal changes.  No one except my family notices, but it still doesn't mean that a person doesn't struggle with a condition just because it's private.  

As things got better, I have been able to relax some of the drastic changes I made in the beginning. I followed this food list as I identified my triggers.  

The triggers that I still avoid:  caffeine, carbonated drinks, spicy foods, highly acidic foods, not drinking enough water, bicycle riding or jogging.  Triggers that I limit:  fried foods, chocolate (not as much as I should),  citrus juices, tomato sauce, high salt or foods with MSG and STRESS.  I have found that with me it's not just one trigger, but it's when I compound lots of triggers in a short amount of time.  

There are triggers that I cannot control like hormonal changes, which I have found are probably the biggest culprit for me at this point.    Fortunately, I have a well-educated gynecologist who understands my IC and doesn't try to treat me for a UTI every time I give a urine sample.  

What worked for me: 

1.  Doing my research! 

Websites I have found helpful:

ICNetwork

ICHelp

IC-Diet

2.  Finding  a doctor that supported my decisions about treatment.  

Although I'm very thankful for the knowledge of the urologist that diagnosed my IC, I decided not to maintain a relationship with his office because it was basically not needed.  I don't need to check in with a doctor to tell me I'm managing fine with my lifestyle changes.  I keep my annual appointment with my gynecologist and she is up-to-date with my treatment decisions. 

3.  Not disregarding lifestyle changes as a treatment option.

If your doctor gives you an option to treat your symptoms with lifestyle or dietary changes, at least try it!  

4.  Realizing there will be good days and bad days.

Even though my IC is manageable, I still have bad days.  This week I've had two mornings where I have not felt well at all.  But I have good days as well.  True, there are things I just can't do--I can't be without access to a bathroom for more than two hours usually.  On a bad day it's much shorter!   That leaves me out of long hikes or kayaking trips on the lake, but we cope and do shorter hikes in times where I'm feeling pretty good.  I have a good life and don't feel sorry for myself on the things I have to miss out on. 

Disclaimer: I am not a medical professional, just speaking from my own personal experiences.   I realize that my IC is a milder form that some people have, so remember to always check with your doctor before taking any advice online or elsewhere.  

A week off...sorta

We've completed our first 9 weeks of school already. So, we took the week off from regular schoolwork.  Unfortunately (or maybe fortunately--depends upon how you look at) all our regular activities were still on the schedule.   JP took the week off from work to catch up on some projects around here and to help me finish up my "clean sweep".  

I cannot tell you how happy I am about finishing the 80 de-cluttering projects I wrote about in this post:  Clean Sweep.   My friends on Facebook are probably sick and tired of me talking and posting about it.  This clean-up project was a redemption project of sorts.  Fall is the roughest time of the year for me.  Sandwiched between my two oldest children's birthdays are the death anniversaries of my father and my brother--roughly a month's time.  Usually I'm just making it through my regular routine, feeling sad a lot, sitting on social media and just not feeling myself.  This project helped me to redeem the time and gave me such a focus.  I get like a high of sorts from de-cluttering and getting rid of things.  So, it was such a perfect time for me to do that.   I love opening cabinets and rooms and not feeling ashamed or overwhelmed at their state and my lack of motivation to do anything about it.

Part of the bathroom storage redo

In addition to the de-cluttering, we are eating a bit differently right now.  Per JP's doctor's orders, we have started eating a Mediterranean style diet.  It's not as hard as we thought it would be.  He still gets two cheat meals a week--our date night and pizza night with the kids.   I've also been working out at least 5 times a week.  

My Scripture reading and writing is fairly consistent right now and I'm working on getting a regular focused prayer time worked back into my life.  I spent birthday money on a nice comfy chair and foot stool to give me a place in our bedroom to do that.  Very excited about that purchase.  

I think the combination of the focused de-cluttering, diet, exercise and devotions have kept me on an even keel this year.  I've also found a peace since the parole hearing and its results.   I'm certainly not saying any of this to brag, because I still have low times and bad days.  But simple lifestyle changes have really helped me this year and I hope that encourages others, too! 

 JP and the kids went kayaking yesterday!  The highlight of their week! 

Our weekly date night is the highlight of my week---every week!  I'm so glad we decided to make it a priority to go out together and have that time to reconnect in the midst of our sometimes hectic lives.  

I'm still hoping the weather will be enjoyable enough to have a fire in the fire pit for roasting s'mores this weekend.  Then, it's back to schoolwork next week.   But that's perfectly fine with me. 

Green Tip

One more test and then we're moving on up to the advanced class! 

Randomness

Sometimes Michael and I do our share of waiting on other people to get done with activities.  We try to multi-task like reading and exercising, but sometimes selfies are the only way to pass the time.  

Tera and Daniel were assigned to make a visual representation of one of the amendments to the Constitution.  I was very pleased with their finished products.  Also pictured is Tera's French 2 cultural project on the Eiffel Tower. 

Michael worked "for hours" on this art project, while I took a nap on Wednesday. 

Friday night was make-your-own flatbread pizza night.  

De-cluttering, a different perspective

I'm in the process of de-cluttering our house. We won't look like minimalists when I'm done, but we will have gotten rid of quite a bit of excess things we don't need or use.  For the past two Saturdays, we have tackled the two "junk rooms" that seem to always pile up with things--JP's "man space" upstairs and our guest room downstairs.

De-cluttering is and has been a very emotional, almost spiritual experience for me. Yesterday as we cleaned out the guest room together, I saw the rest of the house starting to get messy. I immediately get agitated. I didn't want to stop for lunch or anything, but just get it over with. When JP did convince me to stop for lunch, I was anything but nice. I kept cleaning other parts of the house instead of taking a break--that recharge needed to finish the task. We had words...

I started processing through a spiritual frame of mind this whole idea of de-cluttering. We can pack things away into back rooms where no one can see them.  We can pretend that everything in our lives is perfect as long as we don't open the doors to those rooms.   Don't let anyone see those areas where we struggle.  Make sure the doors are closed before we let anyone in.  But we cannot compartmentalize the messes we've made into their own little forgotten areas.  When we decide to deal with our "stuff"--sin, emotions, grief-- it often spills over into the other "rooms" of our house.  Our relationships can suffer.  Sometimes it's a whole room--a big issue in our lives.  But often it's just a junk drawer here, and a piled up counter there that symbolizes little areas that we haven't confessed or given to God to work out of our lives.

But as we let Him come in and have His way with us-

It's tiring.

It can be painful.

It's uncomfortable.

We're vulnerable,

and often scared and upset at a new normal.

 

But in the end, we have done more than we ever thought we could.  Our lives are more beautiful, more open and more welcoming to others.  

 

In the end, we've experienced--His strength in our weakness; His rest for the weary; His comforting presence in the midst of hard times;  and His forgiveness for the mess we've made when we've tried to work things out on our own.  

De-cluttering and deep cleaning of your home and your spirit is hard, difficult work.  Don't get caught up in the end result, but let the process change you into person God created you to be!  

 

Even when we feel like things are beyond our control and we are letting go of things that we once held dear, let's remember these words from Isaiah:

 

"The Lord is the everlasting God, the Creator of the ends of the earth.  He will not grow tired or weary, and his understanding no one can fathom."  Isaiah 40:28

 

"Even to your old age and gray hairs I am He, I am He who will sustain you.  I have made you and I will carry you; I will sustain you and I will rescue you."  Isaiah 46:4  

Clash of Clans--Birthday Celebration

Tera is such a great themed birthday planner.  JP and the older kids play Clash of Clans together, so she decided to give Daniel a Clash of Clans themed birthday party.  

Kiwi gems

Tera made and decorated the cake--half brownie and half peanut butter blondie with homemade whipped cream cheese icing.  

The best part is...he had no clue and was so surprised!

 Me and my baby!  

We had to reenact this photo from 2013. It didn't quite turn out the same!  

Definitely taller than mom, now!