Merry Christmas

Merry Christmas to everyone that checks this ("Hi mom.") My cycle of battling urinary tract infections is back AGAIN! It's insanity! I had a few infection-free weeks and presto...it's back in full affect right before Christmas. The trip driving there will be miserable, but once there, I should have time to rest and relax. I am trying not to let this spoil my holiday. I will take these next couple of days and try to come up with a new plan of treatement for 2008. There is a reason I keep getting infections, and it's not just because I have IC. There has to be an answer. I pray that someone finds something soon! I will update my blog with my new plan of care when I have that all figured out. Oh yeah, and I will be revealing details of the project my husband and I have been working that has been consuming most of my time. Hopefully, in the next week or so I will have details. Thanks for checking up on me........

Sorry for the Delay

Sorry for not updating this since November. My husband and I have been working over-time on a special project, soon to be revealed. I don't have much to report in terms of progress, no better, no worse. My GYN that performed my laporoscopy 2 years ago wondered why I get so many UTIs and yeast infection so she had me take a fasting glucose test to check my blood sugar. Everything came back normal, so I guess that's good news. I began seeing a pelvic floor physical therapist a few weeks ago. I had gone to her last year before my wedding and she was helpful. I know I have a lot of pelvic floor issues so I decided it was time to go back to her. So far, so good. She reallly cares about her work and about helping her patients. Hopefully, this will yield some improvements in my symptoms. The acupuncture treatments have been put on hold until after the holidays. I am going to the Pacific College of Oriental Medicine so they take a break through the holidays. Right now, I am just trying to figure out my meals for the holidays so I can feel somewhat like a normal person. My husband and I will be travelling to my parents house in Minnesota. My mom is very accommodating to my strange and ever-changing diets. She makes whatever I ask, so that makes my life much easier! I know not everyone suffering with IC has parents that understand how difficult and how REAL this is. I am truly blessed to be able to say that I do. After Christmas, I will concentrate on trying to come up with a new "plan of attack" for 2008 to improve my symptoms and get on with my life. For now, I am just trying to enjoy the upcoming holiday with my family.

Another round of supplements

So, I decided to give taking supplements yet another try. A chiropractor that I am seeing thinks he may have the answer to overcoming IC (him and everyone else I've seen). You think I would have learned my lesson by now, but there's something in me that always thinks, "Maybe this time will be different." After spending a nice sum of money on them, I took one dosage on wed. evening. It created such pain in my bladder I couldn't sleep at all. My bladder was spasming constantly and I made at least 10 trips to the bathroom. 2 days later I am still working on reducing the inflammation from this little trial. It will take me probably another 3 or 4 days to recover from the irritation they caused. The next time someone says (no matter WHO it is) they have some supplements that may help I am going to run out of the room! I recently discovered the name of another doctor that believes in a connection between yeast and IC. This is something I know has an affect on my bladder and I have had trouble finding someone in Chicago that believes in that also. I may give this doctor a call...I don't know. It's all a shot in the dark.

Still Struggling along...

It's been a while since I have posted because I have been working on a special project. I will update my blog with the details when the project is finished. Otherwise I am still battling the urinary tract infection/yeast infection issue from 3 weeks ago and have been unable to get much sleep during the night at all. It's quite frustrating and today I am pooped out. That's the never-ending cycle of my life right now. Anyway, just wanted to let anyone who looks at this blog to know I am alive. Off to work...

October 31st is the first annual National IC Day!!!

The same old pattern

You know the saying, "No news is good news," right? Well, that's not necessarily the case with IC. Often times "no news" means you are too tired or don't feel well enough to sit at the computer and type something. That's been my situation for about the last week or so. Two weeks ago I went out of town to Minnesota for a wedding and actually had quite a nice time. I have recently encountered a few articles about how chiropractics can help to decrease the urinary frequency associated with IC through adjustments. While in Minnesota, I went to visit my old, trusted chiropractor that used to treat me when I was in high school. He made a few adjustments to my back and the spasms in bladder really did decrease! I was able to do quite a bit of driving around over that weekend without a lot of trouble. Since back in Chicago, I have added a chiropractor that utilizes the same techniques as the one in Minnesota to my treatment regime. I have had two visits, both of which have seemed to temporarily decrease the frequency. The problem is that I am not certain if I can tolerate the personality of this guy for too much longer. He asks a lot of personal questions in a rather unprofessional manner. I feel like I am a fly on the wall in a men's locker room when he talks sometimes. I may just have to say something to him. I know that the obvious solution is to stop going to him, but I have to be honest. I don't know if I have the motivation at this point to leave, go somewhere else and tell my whole story yet again. He thinks he might be able to help me (as has everyone else I've ever gone to), but if his manner doesn't change in the next visit or so, I will stop going to him. In addition, I have recently contracted yet again another bladder infection, followed by the inevitable yeast infection after a course of antibiotics. It will take a serious of a few weeks to get that all cleared up. Until it's cleared up, I will not be able to get much sleep during the night do to the urinary frequency (it's about every 30-60 minutes around the clock). If I don't sound so chipper, it's because I am not right now. Things will get better sometime though...

Raising Awareness about IC

Yesterday's addition of the Daily Herald (Chicago's Suburban newspaper) featured an article about interstitial cystitis . The patient interviewed in the article is Barbara Zarnikow, the IC support group leader of the Park Ridge support group that I have been attending. You can read the article at the link below. Check it out and learn a little more about IC!

http://www.dailyherald.com/story/?id=51663

Only a prayer...

Well, I had a short lived Elmiron trial. I began taking it last Tuesday and stopped taking it on Sunday. I know that it can take 3-6 months before you really notice a difference, but I just felt so sick after taking it. I had developed a dull ache under the right ribcage. At night, It was actually difficult to sleep on my right side. I also felt just sort-of all over achy. When I examined the bottle, I realized the prescription had expired. I am not sure if that's why I felt so poorly. Regardless, I have an appointment with my urogynecologist on Monday so we will see what he says. Maybe he will want to try it again. For now, I am back at square one with only a prayer...I am a bit discouraged by the whole thing. I realized today that the goal of any treatment should be to improve one's quality of life. If I am having an ache under my ribcage, can't sleep and feel general lethargy, then my quality of life really hasn't improved much. Again, pretty frustrating.

I just got home from my acupuncture appointment. I have noticed a temporary reduction in frequency, urgency and spasms for a few hourse following my appointments. Today, I am going to start to use Chinese herbs along with the acupuncture. I have taken so many herbs already that I don't hold out much hope, but I guess it's not going to kill me to give it a try. Again, I am just praying that there is help, relief, improvement, a cure, reduction of symptons, better quality of life (you get the point) from something.

The sad passing of natural medicine...

Eventually, I will get back to my story of how I got to this point with IC, but for now, I must deal with the present...

On Friday I went to have a nutritional microscopy test performed in Milwaukee, WI (there is no one trained in this test in the city of Chicago). This is a test where both live and dry blood stains were taken and viewed under a microscope. I was hoping it would give me some answers. The test revealed that my red blood cells lacked nutrients and oxygen. Also, my white blood cells were not doing an effective job of removing toxins and debris from my blood. In addition, bacteria, acid crystals, yeast and parasites were visible in the blood. Dr. Young (author of Sick and Tired) believes that these things are present in the blood and and tissues due to an increase in acidity in the body. He believes that by bringing the body into a more alkaline state, the body can have the fuel it needs to repair itself. I believe his theory might be right. The problem is I am not sure if I have the patience to continue trying the "holistic' route. IC has consumed 2 years of of my life and I AM "sick and tired" of it! I want my life back! I want to be able to LIVE and not constantly have to feel pain the the urge to go to the bathroom day and night. I want to be able to eat food! I am sick of spending most of my money on trying to get better.

In search of yet another remedy, I went for an acupuncture session last night. I have been doing some research and acupuncture has been providing some relief for bladder spasms in many IC patients. I went in to the appointment with horrible pain and spasms in the bladder due to some sunflower seeds I ate. By the time I left, my spasms had almost disappeared and I was able to sleep quite well last night. I am definitely going to continue with my appointments for awhile. At least it decreases some symptoms.

As I was driving around working today, I think I decided to give Elmiron a chance. I have been trying unceasingly to find a natural alternative, something to heal the bladder. But, I have not had a lot of success, nor do I have the strength to keep searching. Maybe amongst all the herbs and natural medicines of the world hides something that can cure IC, but I am tired of looking. I am sure I have tried hundreds of things by now, with little to no success. So, against all personal beliefs and philosophies, I am going to try taking it. I have decided getting my life back is more important than finding a natural alternative. We'll see how long I stick with it. I worry about the side effects, potentially toxic side effects of most medications.

Wonderful New for IC Suffers From the Interstitial Cystitis Association!

I Received this info in an e-mail a few days ago for the Interstitial Cystitis Association:

"On September 19, 2007, the National Institutes of Diabetes and Digestive and Kidney Diseases (NIDDK), along with several other National Institutes of Health (NIH) institutes, announced that it will be committing up to a total of $7.5 million dollars per year starting in the summer of 2008 for a five-year project to study IC and related conditions!"

Way to go NIH! Maybe the medical community will finally understand how difficult this can be and come up with some answers.

7 Day Juice Cleanse Over in 3 Days

Well, my 7 day juice cleanse ended in 3 days. I had no idea how sick I would actually get from it. I felt very nauseous, tired, light-headed and weak. By Sunday I realized I had to make it to work the following day so I had better eat some solid food to have the strength. If anyone ever wants to try a 7 day juice cleanse, I recommend taking some time off work. You never know how you will feel. For now, I am back to the alkalyzing raw food diet. I think I may be developing an addiction to garbanzo beans. I am eating them by the can on a daily basis and loving it! On Friday, I will be drivng to Milwaukee to have Dr. Young's nutritional microscopy test done. A live blood stain is analyzed for the presence of yeast, mold, fungus and bacteria. Supposedly, the test is quite telling. I will post the results after I have them. Although the test is paid for out-of-pocket, I feel as though it can provide yet another piece of the IC puzzle. I continue to be convinced this can be overcome.

"Sick and Tired"

I will write more at a later date about my history with IC. For now, I am going to begin writing about what I am presently doing. After months of trying just about everything you could name, I discovered a book that I think can help me. A few weeks ago I began reading a book called, "Sick and Tired" by Dr. Robert Young. I had seen this book on a recent documentary about cancer and decided to give it a try. Dr. Young belives that the Standard American Diet consists mainly of acidic foods, foods that are below 7.0 on the pH scale. He believes that eating acidic foods over an extended period of time (for most of us that extended period of time is most of our lives) alters the internal environment of the tissues of the body to be acidic as well. This increase in acidity supports the development of harmful microorganisms such as yeast, fungus, mold and bacteria. These microorganisms secrete toxins and waste products that tax the body and can lead to disease over time. He advocates for eating an alkaline diet consisting primarily of vegetables to alter the internal environment and regain harmony and wellness in the body. In May, I had a full GI panel done at the recommendation of an osteopath I had been seeing. The results revealed that I did infact have an overgrowth of yeast in the bowel as well as a parasite. I seemed like the perfect candidate to try Dr. Young's program. After 3 weeks of adding raw vegetables to my diet, I am embarking on a 7 day juice cleanse consisting only of geen vegetables. Yesterday was my first day where I drank several juice combos including broccoli/celery and cucumber/zuccini. I didn't really like the taste of most of them, but as my husband sat next to me last night eating Mc Donald's, a candy bar, and corn chips, I heard a voice in my head reminding me that this is only for 7 days. 24 hours after beginning the juice cleanse, I am feeling horrible. I feel fatigued to the point of having difficulty walking around. I feel nauseous and am experiencing an increase in orthostatic hypotension...and no, it's not from lack of eating solid food. Yesterday, I drank the equivalent of an entire head of broccoli, several stocks of celery, a whole onion, 3 whole cucumbers, 2 zuccini, etc...an INCREDIBLE amount of vegetables. My body is detoxing and I am feeling it today. I have a real lack of energy. I'll finish the seven days. I know I will. I know I'll feel better in a few days, but for now, I am going to go lay on the couch...

Rewind to April 2006

I failed to mention earlier that at the same time I was dealing with the concerns of the bladder, I was also planning my wedding. My wedding was scheduled for November 4th in my hometown of Winona, Minnesota I believe the stress of not knowing what was happening to my body and simultaneously trying to plan a wedding was beginning to really take it's toll on my body. My hair began falling out so severely that I began to have a receding hair line and was rapidly loosing weight. I was constantly exhausted. My symptoms increased dramatically in April 2006. My fiance and I had gone to Minnesota to begin the wedding planning process. We had arranged appointments to see the church, meet with the pastor, see the reception hall, taste the cake, sample the food from the catering company and meet with the photographer. We were only in town for a few days, so our appointments were scheduled one right after another. This particular weekend however, I had experienced a frequency of urination unlike any other. I was going to the bathroom every 20 minutes around the clock, day and night. I would lay in bed crying and praying that God would help me. The pain was excruciating. I considered going to the emergency room, but I knew they couldn't help me. No one had yet figured out what I had. I called my urologist back in Chicago and scheduled an appointment for when I returned, hoping I could just make it a few more days. This trip to the urologist yielded a urinalysis which was negative, a prescription for a drug called Elmiron and an order for pelvic floor physical therapy. Still no diagnosis and not much hope. At this point, I decided I would call my GYN and ask for a recommendation for a urogynecologist. I had to keep searching for answers and searching for someone who might be able to tell me what was happening to my body.

"How come your chicken looks different than mine?"

I decided to take a break from writing about my history with IC and say that I have gotten some very positive responses from my friends and family about this blog. My husband, Tom, and I just returned from a trip to Colorado for a wedding of a long-time friend. Travelling is always difficult due to the numerous bottles of medication, homepathics and herbal supplements I am taking. Food is also always an issue. There are so many things that I am not able to eat anymore because they can exacerbate the symptoms of IC. Thankfully, my friend was gracious enough to special order a meal for me at her wedding so I could eat comfortably. This however yielded lots of questions from the people around me, some of whom I have known since grade school. "How come your chicken looks so much different than mine?' "How come you are eating that?" I had not anticipated having to talk about my battle with interstitial cystitis. "Hey, my life has changed dramatically in the last 2 years. Things are a lot different since the last time you saw me. I now have a chronic illness that affects the bladder and causes constant pain. I am lucky to be able to come here. I spend a lot of money on doctor bills and have a hard time working full time. Congratulations on your new promotion!" I told an abbreviated version of the story to old friends. They were surprised by the news and commented that I "hid" the disease well. For me, it has never been about hiding the fact that I have interstitial cystitis from people. Although it's part of my life, it's still not me. I have realized through all of this that I have an overwhelming amount of perserverence. There's a drive within me that won't, maybe can't, stop striving to live life. I love life and want to experience all that it has to offer! I had not anticipated on IC being part of that plan, but that was MY plan and I believe in something BIGGER. I guess the reason that I don't really tell people that I have interstitial cystitis (until this blog) is because I am too busy trying to kick it's butt. My friend referred to me as "strong." Maybe, but I don't really know. "Strong" is the belief that I have that circumstances can change and be changed.

March 2006 "Don't ever let anyone stick a razor blade in your bladder!"

I returned to the urologist for an appointment following the trial of Detrol LA. After explaining to him the difficulty I had with the medication, the doctor decided that it was necessary to perform a cystoscopy on the spot. A small camera was inserted into the urethra and slowly advanced into the bladder. This allows the doctor to look at areas of the bladder and urethra that usually do not show up well on X-rays. I asked the doctor if this procedure was painful and he replied, "I don't think so. I've never really had anyone say anything about it." As the doctor began to insert the camera, I was shocked at how painful the procedure was. I informed the doctor, "The next time someone asks you if this is painful the correct answer is 'Yes!' Infact, it feels like you're inserting a razor blade!" I could feel the "cutting" sensation for several hours after the procedure. Following the cystoscopy, the doctor told me that I did not have any ulcers in the bladder and that my bladder look "normal." Several months later I learned that Hunner's ulcers are only present in 7-14% of interstitial cystitis cases. This urologist never considered the fact that I could have interstitial cystitis without ulcers. I was not yet knowledgeable about this condiion so was unable to make the suggestion to the doctor myself. Again I left the urologist with samples and a prescription, this time for a drug called Prosed. Another drug that turns your urine colors, can stain your clothes and your eyeballs...

Febuary 2006 (Detrol LA trial)

The pain and pressure in my bladder continued. It seemed like no matter what I tried, I could not get myself to feel any better. By now, I was waking up 6 times or more a night to go to the bathroom. I had a frequent need to use the bathroom during the day as well, sometimes as often as every 20 minutes. I began to find that even walking down the stairs of my 3rd floor apartment difficult. By the time I had reached the bottom, I felt the urge to go the bathroom again. I was stricken with fear and anxiety every time I had to leave my house. Would I be able to tolerate the pain? Where would I go to the bathroom? What was happening to me? How would I be able to work? Sleep deprived and depressed, I called my GYN again. Fearing that I may be acquiring a "neurogenic bladder," she referred me to a urologist. My first meeting with this particular urologist was less than desireable. Unsure of what my actual diagnosis was he remarked, "We can always put in a sacral nerve stimulator to calm down the nerves." Thanks. He COULD NOT give me a diagnosis, but he COULD recommend surgery. Nevermind the fact that surgery is what put me in this situation in the first place! Opting for more conservative methods I asked, "What are my other options?" The urologist prescribed Detrol LA for a spastic bladder and stated, "Sometimes this kind of thing just goes away." The urologist was kind enough to give me a four week sample pack and a presciption. "Try this for six weeks and come back," He said. After three weeks of taking the medication, I knew it wasn't working. Not only did I still have an almost unbearable urge to urinate, but the medication so severely relaxed the bladder that I began to have severe urinary retention. I stopped the medication and chose to wait the remaining three miserable weeks for my follow up appointment. My efforts were devoted to trying to tolerate this bladder problem and hold onto my life.

December 2005-January 2006 (Pyridium and Antihistimine Trial)

I have been dealing with IC since December, 2005-the 12th of Decemeber to be exact. Almost immediately following a laporoscopy to remove a cyst, I had difficulty urinating. I called my GYN within a few days of having the surgery. I remember her telling me, "If it doesn't go away in 3 days, call me." Ofcourse, it didn't go away. She called me in a prescription for Pyridium, a drug that turns your urine red, can stain your clothes AND your eyeballs. After two days of Pyridium, I was forced to stop due to severe migraines. Never having a migraine in my life, I called my pharmacy. The pharmacist told me that was a rare, but possible side effect. Lucky me. I continued to have increased pain, pressure and difficulty urinating. I tolerated the condition as best I could until I returned to my GYN for a follow-up visit in January. I explained that I was still not feeling better and that this condition was really beginning to take it's toll on me. She suggested we try an antihistimine. She said she had tried this particular medication on another patient. To her pleasant suprise, that patient was now "urinating like a race horse." Hoping to heck to also be "urinating like a race horse," I filled the perscription. This episode of medication was also short lived. I didn't feel any better. I also was unsafe behind the wheel of my car due to extreme drowsiness. As a home health occupational therapist, it was important that I be able to safety drive. Confused by the situation, I didn't know what else to do. I continued to tolerate the condition, wondering if my life would ever be the same again.

Day to Day Fight

Tom and I were married on November 4th, 2006. Quite honestly, it has not been easy. We have certainly had our fair share of conflicts and arguments, the usual things that two people have to go through as they try to mesh their lives together. However, our situation is anything but usual. In December of 2005, I developed a bladder disease called interstitial cystitis following a simple laporoscopy to remove an ovarian cyst. I went in to the procedure "normal" and came out with bladder problems. Almost immediately, I had severe pain, pressure and difficulty urinating. In the beginning, it would take me 10 minutes and severe straining just to urinate. Everyone told me it would probably go away. After several months of waking up 8 to 10 times a night, I realized things were not getting any better. The pain was almost unbearable at times and I wished that I would cease to exist. I had severe cramping, burning and pressure. The best description of the pain I can give is like saying I had a charlie horse, a blow torch and a brick layer all wreaking havoc on the bladder at the same time. Nothing would take it away and I felt as though my life was slipping away. I have experienced that agony for several months now, both before and after I got married. As I struggle daily, sometimes constantly, to overcome interstitial cystitis my husband is there reminding me that there is still more to my life and loving me even though our situation is far from usual or normal. My optimistic side hopes that one day I will look back on this and be thankful for the person it made me. To date, IC remains quite a mystery for the health profession. It is often difficult to find resources as well as advice for day to day living with this disease. The intention of this blog is to share my story, both tiny steps forward and what sometimes seem like giant steps backward, so that others will know they are not alone in this battle. I will continue to tell my story, so please check back often. I am thankful for the the support of my husband, parents and friends. Even though they can't fully understand how difficult this is, they sure try their hardest to do so.

Be encouraged,
Jenny