This coming August I turn half a century old. I've been thinking lately about all that has happened in the 40s and frankly I want a do over or I should say a do over with a new body! Many of you will turn 40 and life will just go along its merry way with no large health issues rearing their ugly heads. But for me 40 was just the beginning of a very painful journey that I'd like to kick to the curb daily. So let me get all of my IC (Interstitial Cystitis) circle of friends up to date on all that I've learned on my IC journey since I last wrote about it which was years ago.
Diet is just critical. I live day to day on the IC diet. I laughed a few years ago when I was in a surgeon's office discussing having my diseased thyroid removed. The surgeon had a friend who had IC and when I asked about medications that I would be given before and after surgery that might flare my IC he got very curious and asked me a ton of questions. When I said the IC Diet was critical to getting and feeling better he said, "Icy? Like Slushes?" I nearly fell out laughing. Once he realized what I was saying he laughed too. I use the IC App to keep me on track. By now I know what I can and what I can't eat. But ever once in a while I'm out and in a restaurant and just don't know if a certain spice or ingredient will cause me to be back in a lot of pain. So I have the IC App on my phone. You can download this as well just search for ICN Food List. It has all the main food groups, beverages and seasonings covered. Truthfully I can't eat off the diet at all. I can try but I can feel it too.
When I was first diagnosed with IC I could only eat about 15 foods. Over the last several years I've gotten to a point where I can eat most all of the foods that are on the ICN Food List but I still can't eat seasonings even the ones that should be IC friendly hurt me. But strangely over the years my taste buds have radically changed. When I do try to reintroduce foods some of which I used to love I just can't believe I ever ate some of these foods. Red meat is probably one of the biggest taste changes I notice. I really don't like red meat. I used to love red meat but truthfully now it tastes like I'm eating a tire. Just no flavor at all. I figure if you have to drown a food in seasoning for it to taste good then it just isn't worth eating.
Medications & Research
I've been on Hydroxyzine (the generic for Atarax) for almost 5 years now. I don't think I could make it without this medication. If you have IC and you don't take Hydroxyzine I urge you to consider asking your doctor for this medicine. IC patients have mast cells that have been activated in their bladder often in great numbers. We all have mast cells but for unknown reasons IC patient's mast cells are activated abundantly and cause great pain. Hydroxyzine helps calm the histamine that those cells send out. I describe a flare up for me as feeling as though I've been stung by thousands of fire ants but on the inside where you can't scratch or put ice or medicine on it.
Over the last several years I've read countless articles and research papers on treating interstitial cystitis and mast cell activation issues. One of the things that always boggled my mind with IC was being able to eat a food one day but then a month later not being to even taste it without doubling over in pain. But then I read an article written by two dietitians for IC patients. The article described the phenomenon and compared our IC bodies as having a large bucket inside. As we eat foods some of those foods are inflammatory foods or foods that cause histamine to be released in our bodies. Those histamines start to fill our bucket inside. As long as the buckets aren't full we might not notice or have any reaction to a particular food. But once that bucket is full and starts to spill over with histamines or other inflammatory responses then many foods start to hurt us.
Sadly foods are not the only things that hurt IC patients. Scents, medications, vitamins, beverages, every day household products....you name it and I can probably name an IC patient that I know that has trouble with it. I'm amused and annoyed by the number of people who think just because something is all natural then it won't hurt me. Peanuts are all natural but for someone who has a peanut allergy they are deadly.
Bladder Pain & So Much More
Unfortunately bladder pain isn't the only symptom most IC patients feel and certainly not the only symptom I have. The last 5 years have been filled with of course feeling like I was peeing razor blades and sometimes even seeing blood in my urine only to have a urinalysis confirm while there was a lot of blood there was no infection just an IC flare up. But I've also had a subset of conditions that many other IC patients experience as well:
- Chronic pelvic floor dysfunction
- Irritable bowel syndrome
- Migraines
- and a long list of other symptoms that are frankly just too personal for a blog such as this.
For the first couple of years after I was diagnosed I heard a lot about remission. Some IC patients go in and out of remission with the condition. I always thought if I ever went into remission I'd do everything I could to stay there. But it never really occurred to me that just as I couldn't keep myself from getting IC I couldn't stop it from starting back up either. For the last year I have come the closest to remission that I believe I ever will. After I had my thyroid removed and got stabilized on thyroid medications I noticed that food choices opened up for me. Some foods that had bothered me greatly no longer did. They were always safe foods on the IC Diet but I had just never been able to eat them. So I was excited. My diet went from 15 foods to 30 then to 50. I still never ate off the IC Diet but just having more of a variety was such a treat.
Also during the last year I finally finished up what medical science calls the "change". Such a dumb name! I'm not sure what name would have been more appropriate for this time of life but I don't feel changed. I never had hot flashes or crazy moods swings. I did have crying moments but I just attributed that to IC and the pain. I did gain weight after I had my thyroid removed and after going through the change and chin hairs just became ridiculously resilient. Seriously I can tweeze them, wax them or shave them and for every one I get rid of at least a dozen grow back. My eyebrows really took a beating. They fell out in spots & thinned in other areas. Maybe that's what the change really means.....your eyebrows move from the bottom of your forehead to the bottom of your chin and you suddenly grow a mustache that any 13 year old boy would proudly display. Oddly many women who are diagnosed with IC are also in the 40s and in the changing years. On the positive side I hardly even noticed going through the change because I was so focused on the torture going on with IC.
Remission....Here Today Gone Tomorrow
Remission...I was there for a short while. I had about a year where I could eat more food, not food off the diet, but more food. I didn't hurt in my bladder and I was convinced I was well on my way to total healing. I know IC has no cure but God and I have talked a lot about this wretched season in my life and HE had assured me long ago this was only for a little while. So when I started feeling better I thought this is it! But sadly in the last week I've had a very bad flare up of all those old symptoms. So I doubled my Hydroxyzine a day (something the specialist I saw out of state had advised me to do) and I began taking Valium at night to help make the pelvic muscles relax and decrease the pain somewhat. So far none of the medication is helping. But I know it takes time. Once a pain flare up begins it is usually about a week or two before it calms back down. So I'm just trying to cope through this one and come to grips with the fact that IC is not ever going completely away. The best I can do is to eat the IC Diet, take the medication to help with histamine counts from the mast cell activation & read all the new research coming out continually about IC.
If you have IC I ask that you keep in touch with me. If you find new things or medications that help please share. I know many of us have gone through weeks and weeks of bladder instillations with various bladder cocktails. Some of us it helped and others like me it just made worse. I know some of you have had great success on Elmiron and I so wish I could take this medication and it work for me but unfortunately I am just not that lucky. The last
bladder hydrodistention I had was successful and showed that I had come a long way in getting my bladder wall healthier. So I know that I'm on the right path to getting healthier but like any road in life there are bumps.
When I was in high school I had an English teacher named Mrs. Cranford that was just exceptional in so many ways. She was a beautiful lady inside and out. She wore long beautiful floral skirts with colored hosiery that matched and high heeled shoes that buckled ever so delicately at her ankles. She always had on jewelry that matched her outfits but she wore a gold heavy ring on one hand that still sticks out in my mind. I'm certain it is because she was so expressive with her hands as she talked and moved. She always spoke softly and quietly. So you had to listen closely to hear all that she said. I was often amused at the number of high school boys in my class who had crushes on her. I think they were fascinated by her lady like behavior in all that she said and did. 
Elijah heard such a voice on Mount Horeb. 1 Kings 19 tells us that Elijah runs and hides on Mount Horeb because Jezebel has threatened to kill him. God speaks to Elijah on Mount Horeb not in the wind, not in the earthquake and not in the fire. HE speaks to Elijah with a "still small voice". Have you ever had an encounter with God where HE spoke to you? Maybe not where others could hear but where you heard HIM clearly speak to you? I have and "still small voice" perfectly describes what I heard. No I'm not hearing things and no God didn't speak to me where all those around me could hear what HE had to say to me. But I heard HIM clearly as though he had spoken out loud. There was something about that "still small voice" that while at the time I was crying out in grief and pain calmed me....made me stop crying and just listen. It was my maker and my Heavenly Father's voice and my heart, soul and mind knew that voice instantly. The verse "Be still, and know that I am God" (Psalm 46:10) took on a deeper meaning for me that day. I realized that in my grief and in my pain I reached the end of me and only one person could help heal my pain. I was still and at a point to know that God is God and I am not. So HE talked to me because HE knew I would listen. HE talked to me in a "still small voice".
