Beauty for Ashes

It seems several months have past since my last update. Usually, if I go for a long time without writing, it means nothing much has changed. After several months of physical therapy and many visits to the chiropractor, I am pretty much status quo. I still pray for a day that I may be symptom free, but for now, I live each day with hope and faith that God is giving beauty for these ashes.

Vitamin and Mineral Supplementation

Thanks to my friends, family and fellow IC sufferers that continue to ask about my progress after 3 years. I am still persevering with vigor in my quest to try to find new treatments that may help cure (dare I say it) my IC. I am not currently taking any prescription medications anymore. Throughout my IC history, I have tried several different things, all to no avail. I seemed to suffer significant side effects from almost everything I tried. The may treatment that has continued to help me is the Urgent PC. To date, my nighttime urinary frequency has decreased to an average of 2 times/night. I feel as though this is one small victory for me in my fight against IC.

Feeling as though my urogynecologist had little more to offer me, I turned to a new doctor yet again. This particular doctor, Dr. F. , specializes in preventative and diagnostic medicine. He measures things such as Vitamin D and magnesium levels in the body as well as several other vitamins and minerals important in maintaining healthy cells, tissues and nerves in the body. Although many physicians do not feel as though they sufficiently understand the function of many of these important nutrients, Dr. F. believes deficiencies in vital vitamins and minerals can contribute to the disease processes of the body. Since Dr. F. had expressed a perspective that I had not yet encountered, I decided I would give his treatment ideas a try. A blood test revealed a severe vitamin D deficiency, a deficiency that is often present in autoimmune diseases, and a magnesium deficiency, a mineral that among other things helps to regulate muscle contractions. The treatment for these deficiencies is with supplementation. I have been fortunate to have found a few supplements that do not irritate the bladder. I currently take vitamin A, vitamin D and iodine orally. Since I was not tolerating an oral dose of magnesium or any of the B vitamins well, Dr. F. suggested trying a vitamin IV bag weekly for the next 4 weeks. I have had 3 IV's in the doctor's office so far. The IV takes about 45 minutes during which I usually bring a magazine to read. I am noticing an increase in energy during the day and an improvement in my sleep. However, I have not yet noticed a decrease in day time urinary frequency or decrease in food sensitivities. Dr. F. believes that it will take time for the body to begin to heal itself and that I need to continue to be patient. During my last visit he commented that he has other ideas to try if I don't seem to make any improvement from the IV bags. Although I wish these treatments would produce some quicker results, I am grateful for finding a doctor that is willing to think beyond just the bladder and really try to assess the whole body. As I approach the end of my third year of chronic pelvic pain in the form of IC, I try to remain hopeful that 2009 can be a year of healing for my body. Best Wishes to everyone in the new year!

Urgent PC/PTNS Update

After finishing the series of bladder instillations without much improvement, I decided to try the Urgent PC to help with the overactive bladder part of IC. I was fortunate to get approval from my insurance company for this treatment since it is relatively new. A needle electrode is inserted into the posterior tibial nerve located a few inches above the medial malleolus (the bony point on the inside of your ankle). The electrode is then hooked up to a small box that provides an electrical current into the nerve for 30 minutes at a time. While the posterior tibial nerve is located near the ankle, it originates from the lumbar-sacral nerves (L4-S3) which control the bladder detrusor and pelvic floor. Treatments are given once a week for 12 weeks, then tapered to every other week for 6 weeks, then once a month and eventually, one every couple of months. According to the Urgent PC website, most patients begin to feel some sort of relief around week 6 with the most common improvement being made in nighttime urinary frequency. The treatments are not painful. In fact, I would often bring a magazine to read during my treatment session. FINALLY, I have a bit of good news!!! I have finished the weekly series of 1 a week for 12 weeks and am now tapering down to 1 treatment every other week. Around week 4, I noticed that my nighttime frequency was decreasing to around 2 times each night. After my eleventh treatment, a typical night for me consisted of getting up 1-2 times. It's a drastic decrease from my previous history of getting up 4, 5, 6, 7 or more times each night. Although the Urgent PC has not done much to improve my daytime schedule, I am still pleased with the results. I am overall in a better mood because of my ability to sleep. However, I have noticed that the Urgent PC does not provide me with pain relief. If my bladder becomes more irritated, then I may still be up several times a night, so I really try hard to stick to my diet and eat the foods I know I can tolerate. This treatment is definitely worth trying, provided you can get it reimbursed from your insurance company. I went the route of having it pre-approved before having the procedure, since the cost of the treatments is rather expensive and considered "experimental" by many insurance companies. I hope this procedure can be more easily available to patients. For me, it's been a blessing.

Bladder instillations, Roller Coaster Rides and Bleep Blips

I know I've taken a LONG time to update this...mainly because not much has changed. I recently finished a series of 12 bladder instillations. Sadly, I received little to no significant benefits from them. Some people do really well with the instillations. I only received very short term relief, one to two days. Then, all the symptoms would return again. It is a bit discouraging. I just keep praying (and PRAYING and PRAYING and PRAYING) that there would be something that would help me.

My husband and I were recently watching a show about the physiological effects of thrill rides such as roller coasters. Thinking I might like to take up the pastime of thrill-rider enthusiast, I decided to brave the crowds, long lines and theme-park prepared foods with my husband and go to Six Flags Great America last week. I know, not really the best choice of activities for people with IC. In fact, this type of activity can be impossible for many people. I prepared myself for the adventure by telling myself I was going to take my time and use the bathroom before extremely long line. I knew where all the restrooms were located and comforted myself by knowing I could go directly to it when I got off the ride. I also had a bladder instillation the day before which help to slightly decrease my frequency. I was set and ready to go!

We started off the day with a warm-up rollercoaster, a "family" rollercoaster as it is described. No problem there. My bladder felt fine. My stomach felt fine. Off to ride number two...The Orbit. The description for this ride said, "Come get your world turned upside-down on The Orbit, a flat, spinning ride that rises up just to flip you over." Sounds intriguing, doesn't it? My 6 foot four inch husband and I were crammed into a small cage-like device, he in the back, and me, with my knees bent nearly to my neck, in the front. "Can't you move your hips in a little more? I can't fit my legs in this thing." He asked. Wiggling and wiggling around until we were almost stuck, we somehow managed to jam both of ourselves into this square box of a ride. The ride began to spin...and Spin...and SPIN...endlessly until I began to feel both bored and very sick! I couldn't get off this dumb ride fast enough. Weak-kneed and dizzy, I manage to dislodge myself from the ride saying, "I think I am gonna throw up! I think I gonna throw up!" Searching frantically for a chair in some form, I took a seat on the curb. For the next hour and half, I proceeded to be both dizzy and nauseous every time I moved or turned my head. At one point, I willing stumbled my way to the first aid station and asked if they had a cot I could rest on for a while. My husband later told me my eyes were dilated. Sadly, we decided we were going to have to leave the park, not because of my bladder, but because of the stupid spinning ride that caused some strange episode of vertigo.

One our way out the park my husband said, "I want to get a funnel cake before we go. I feel like if I at least get a funnel cake, our trip won't be a total waste." Unable to eat the funnel cake myself, I wondered into a candy shop to see if there might be something to make my theme park experience worth it. I spotted my favorite candies, Bleep Blips (a cross between Smartees, Sweattarts and shaped like a flying saucer ) and in small quantities I can actually eat them. Not wanting to irritate my bladder, I decided I would purchase just two Bleep Blips. My husband suggested that I get a big scoop of the candies as he would share them with me. Vowing to myself that I would only eat two, I bought a bag full.

I walked out of the store and popped the first Bleep Blip into my mouth as we headed toward the exit. Within minutes of savoring my favorite candy, my head began to clear, my dizziness subsided and my nausea vanished. These were miracle Bleep Blips! Suddenly, I was feeling...FINE I was feeling so good in fact, that we were able to ride some of the big rollercoasters and remain at the park until closing time. Anytime I was feeling sick to my stomach, I just popped a Bleep Blip and away we went (I actually ate about 10 of them). We now have plans to go back later in the summer to ride the rest of the rollercoasters that I missed, and of course, armed with a pocket full of Bleep Blips to tame my ails.

Bladder instillations continued

I haven't posted for awhile because not much has changed. I am still having weekly bladder instillations. I have had 8 in total now. Honestly, I am not really noticing much of a difference. Some days I feel like things are getting a little bit better and some days I really can't tell. My doctor told me it could take several weeks to have any benefits if I am not taking Elmiron along with the instillations. Although I dread being catheterized, I will continue for several more weeks with the hopes of achieving some positive results from all of this. The nurse at my doctor's office told me it seems as though I have a pretty severe case of IC since it doesn't really seem to be responding to the instillations. I try not to really get caught up in the severity of it though. I can still work and do some normal activities so I am thankful. It is what it is and I just try to take one day at a time and anticipate that things will improve. Today, my husband and I are headed off to a Chicago Cubs game, so that should be fun. I do get a little bit nervous but I usually have to go to the bathroom several times...should still be fun though. I need to have a little fun now and then.

Interstitial Cystitis and Relaxation

I have recently been realizing that I need to focus on some relaxation techniques to retrain my pelvic floor. I am constantly holding my muscles in a state of tension and I believe this is one of the primary factors involved in causing my bladder to spasm. This is a common problem among IC sufferes. I've known this information for a long time, I just didn't "get it" until now. I realize that increased tension can result in decreased blood flow and nerve conduction to the affected area. I believe that if I can learn to decrease tension, I may be able to improve my body's ability to begin to heal. Let me tell you, learning to "relax" is NOT easy. The feeling is so foreign to my body. The minute I let the pelvic floor relax, I want to tense it again. Tension feels normal, and relaxation feels oh so abnormal. With practice, I believe I can begin to make relaxation feel normal.

I am still doing the bladder instillations. I went to the doctor last week and he recommended that because I am not really feeling any relief, I should continue for another 6 weeks. Lucky me. There are an infinite number of things I would rather be doing than being cathaterized on a weekly basis. I decided I needed to take a week off this week. Next week will begin my second series of six more instillations. Hopefully soon I will begin to feel some changes.

My IC Story

I am a little bit behind in my posting but New Dawn Pilates received a rave review from Molly Miller PT (consulting physical therapist for the Interstitial Cystitis Association). It's wonderful to have her support for this first project! If you want to see it, check out her website at:

www.roadtoslainte.blogspot.com


Tom and I are overjoyed to have such a positive review of the DVD.