The Invisible Disease

September is Interstitial Cystitis (IC) Awareness Month.  IC is a debilitating bladder disease that there is no cure for at this time.  Whenever I read articles written about IC I am so frustrated at how inadequately they describe the disease.  So many times it is called a chronic pain syndrome.  That hardly comes close to what an IC patient experiences day to day year after year.  I do like the line on Wikipedia that describes IC this way:  “IC/BPS can result in a quality of life comparable to that of a patient with rheumatoid arthritis, chronic cancer pain, or a patient on kidney dialysis.”  IC is life changing.  It takes the food, the physical activities, the day to day energy, and most of all it is so very difficult to see a light at the end of the tunnel with this disease.

Medications

My bathroom cabinet has 4 baskets filled with medications that have been tried on me to hopefully get me better.  There is only one FDA approved medication for IC and that’s Elmiron.  Elmiron is thought to repair the lining of the bladder but the pharmaceutical company that produces it is honest and says they don’t know what it does.  But it does help some of the people who take it.  I took Elmiron when I first got diagnosed.  I was violently ill for almost a week after taking it and after I stopped taking it.  The list of side effects of the medication is long but if it helps and you don’t have those great!  I just wasn’t that lucky.  After Elmiron I’ve been put on over 25 different medications trying to control some of my symptoms.  Some were compounded some were medications for other illnesses but help control some of my symptoms.  All in all only one of the medications actually helped at all and that was hydroxyzine.  Hydroxyzine helps because it lowers the histamines in my body that the mast cells in my bladder are sending out from the disease.  Everyone with IC has an overabundance of mast cells in their bladder that have been activated and are pouring histamines into your system.  But even this medication doesn’t get me totally out of pain.  So this week I’ve started on a new medication called Cystoprotek.  Cystoprotek is sold online and was first suggested by my urogynecologist.  Cystoprotek is supposed to work similarly to Elmiron but without all the side effects.  The biggest side effect with Cystoprotek seems to be stomach upset which is helped greatly by freezing the pills for at least an hour before you take them.

Alkaline Diet

For over 2 years I’ve been on an alkaline diet with only whole foods.  I can’t eat prepackaged foods that have chemicals in them which pretty much knock them all out for me except for one brand of saltine crackers and some Amish styled pasta.  I buy and drink only Mountain Valley Spring Water which is very alkaline at a pH of 7.8.   I eat fish grilled or baked with only real butter and I can eat these other foods and that’s it:

v  Blacked eyed peas

v  Carrots

v  Celery

v  Cucumber

v  Green beans

v  Homemade bread

v  Potatoes baked, stewed or mashed with sour cream &/or real butter

v  Red and yellow peppers

The diet is a healthy diet except for the fact that it won’t allow me to eat a wide enough variety of food and to get enough B vitamins.  So I give myself a B12 shot every Wednesday.  This diet is monotonous.  I have blogged before about my diet and how I understand how the Israelites felt in the desert eating the same food day after day.  It truly is maddening.  But the diet decreases the pain further.  So I stick with it and I never cheat.  I could NEVER have said that before IC.  I was the least committed dieter out there but pain is a wonderful motivator.

Medical Procedures

Many patients with IC have various procedures done to help cope with the pain.  None of them completely stops the pain but the hope is that it makes the pain more manageable.  I’ve had my bladder repeatedly numbed with medications.  I’ve had bladder instillations which means a cocktail of medications were put into my bladder with a catheter and then I held the medicine in my bladder for an hour.  Many patients get relief from bladder instillations.  I wasn’t one of them.  I had 6 instillations but each one increased my pain more and more.  For those patients that these help your urologist may teach you how to do these at home which would be more convenient than having to run to the doctor once a week or however often your doctor suggests you have them.  I had them once a week for 6 weeks.

Invisible Disease

People occasionally ask how I’m doing and then comment on how good I look which is a nice product of eating such a clean diet.  Your hair and skin will look so much better when you are eating whole foods than if you are eating a diet laced with countless unknown chemicals.  I often complain to my friends who also have IC that I wish for one day other people could feel what I feel or see my damaged bladder so they would know that I’m not eating this way because I want attention.  I’m eating this way and trying new medications on an ongoing basis to get out of pain.  I could live on prescription pain medications for the rest of my life but they do nothing to help IC in fact I’m convinced in the long run they would actually make my symptoms worse.  So I press on every day researching the latest study for the disease and hoping and praying for the day that there is a light at the end of the tunnel.  This disease is hard for those of us suffering with it but it’s also hard on our families who have to watch you go through all the suffering, who want to help but don’t know what to do, and who just want everything to go back to the way it used to be.  I’m thankful that I have God to walk with me through this painful journey.  HE whispers to me when I cry out…”this is only for a little while” and I cling to that and know that HE is making me stronger in the meantime.

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”  Romans 8:28

 

THINK

School is starting back and a wide range of emotions have started cooking in my household.  Some are elated at the prospect of adult only lunch hours and a quieter household while on conference calls.  Others are anxious over class schedules, new schools and if any of their friends will be in their classes.  Every year as a mom I go through the same range of emotions that everyone in my household does but this year we have some scary changes about to happen.  All 3 of my kids will be at different schools.  One will be a high school sophomore....one a 6th grader in middle school and one a 3rd grader in elementary school.  Honestly the scariest of these has got to be middle school. 

My daughter, Sarah, moves from elementary school to middle school this year.  The school she will attend is phenomenal.  But the metamorphosis that takes place during middle school is anything but phenomenal.  Middle school boys and girls are trying to figure out who they are or who they want to be.  They are inundated with images of what the world wants them to be through about every media imaginable...television, social media, magazines, and their friends.  In the midst of this transforming all of these kids are thrown together to go through this metamorphosis together.  Some kids learn to encourage each other through this painful transformation but others learn to cope with their own pain by pointing out everyone else awkwardness. 

I remember my first day of middle school which in my day was called junior high.  It was scary!  The school was a lot bigger than my elementary school.  There were a whole lot more students there and most of them I didn't know.  On one of the first afternoons at dismissal I was run over in the hallway.  One minute I was walking out of class to my locker and the next I was on the concrete floor in a lot of pain after an older boy had plowed me over and kept running even though his friends yelled for him to stop.   Middle school is just a difficult time whether it's because you have kids around you that don't care if they just ran you down in the hallway or whether other kids are pointing out your physical changes.

There are many things that I could say that would make middle school better for kids.  But if I had to pick just one I would say that learning to only say encouraging things would be number one.  I love the acronym THINK. 

• T.....Is it TRUE?
• H.....Is it HELPFUL?
• I.......Is it INSPIRING?
• N......Is it NECESSARY?
• K......Is it KIND?

I've told my kids that anytime you are about to say something ask yourself these things.  I believe it will help keep you out of trouble and keep you from hurting other people as well.  Unfortunately everyone in middle school won't live by these rules but being an example for other kids to learn from is a good start.

"Finally, brothers and sisters whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable---if anything is excellent or praiseworthy--think about such things."  Philippians 4:8