Fight IC

New Dawn Pilates is Finally on Facebook!

2010-10-31T20:20:00.000-07:00

The New Dawn Pilates site is still down, but don't fret. You can still be part of the NDP community. Please join us on facebook and click "Like." Let's keep encouraging one another.

New Dawn Pilates Site Down

2010-10-16T05:04:00.000-07:00

Hi Everyone. I just wanted to take a moment and let everyone know that the New Dawn Pilates Site, www.newdawnpilates.com is temporarily down due to an overload of SPAM e-mails. We are working on fixing the problem and I will let you know when it is up and running again. In the mean time, if you wish to purchase the New Dawn Pilates DVD, please visit amazon.com. Thanks for your patience.

Jenny

New Dawn Pilates on Blog Talk Radio!

2010-08-09T18:22:00.000-07:00

Hi Everyone,
I know it has been eons since I have posted on this blog. I wanted to take a moment to let everyone know that New Dawn Pilates is still alive and well! On Tuesday, August 10th at 7pm I will be a guest on the Blog Talk Radio Program, Interstitial Cystitis Anonymous. This is a show hosted by health educator, Gloria Prater. Below is the link for the program and call-in number:

http://www.blogtalkradio.com/ic
(646) 478-3838

Please feel free to call in and talk to us live as we talk about IC and pilates. We would love to hear from you.

Sincerely,
Jenny

Beauty for Ashes

2009-05-08T20:42:00.000-07:00

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

2008-12-03T20:13:00.000-08:00

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

2008-09-11T18:11:00.000-07:00

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

2008-07-04T09:06:00.000-07:00

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

2008-05-17T05:59:00.000-07:00

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

2008-04-29T20:22:00.003-07:00

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

2008-04-29T20:17:00.000-07:00

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.

New Dawn Pilates website is up and running!!!

2008-04-20T19:26:00.000-07:00

The New Dawn Pilates website is FINALLY up and running!! Tom and I are very excited about this. The website will provide a forum for people struggling with pelvic pain disorders and exercise as well as allow people to purchase the DVD from us. The content is not 100% complete yet. We will be adding additional info on pelvic pain disorders, but this does not in any way affect the ability to use the website. Again, we are super happy that the official website is finished!

Bladder instillations and the Discovery of Tribulus

2008-04-12T07:23:00.003-07:00

Since I wrote the last post, I have had three more bladder instillations...yes with the catheters. After my third one, I started experiencing increased bladder pain. I called a friend who has had IC for a number of years and asked her about the increased pain. She told me that when she first started getting bladder instillations several years ago, she would have to go home and sit on an ice bag because it bothered her so much. She told me that the increased symptoms should subside in a day or so. Relieved, I just waited out the symptoms and sure enough, by the next day things had calmed down. All in all though, I have not really had any remarkable breakthrough in my symptoms yet with the bladder instillations. According to some research I found on the internet, I may have another 6 weeks or so before I am really able to tell if anything changed. I am praying something improves! I did however find an AMAZING supplement that has helped me when I feel like I have a UTI. It is called tribulus and the company who makes it is called Standard Process. Originally, tribulus was marketed for impotence...probably not going to help ME much. However, recent research suggests that tribulus has little or no effect on impotence. Tribulus did prove to have an effect on bacteria of the urinary tract. In fact, it inhibited the growth of ALL infective bacteria of the urinary tract that were tested. I was nervous about trying this supplement because so many things (food, medication, supplements etc,) irritate my bladder. After a few days of taking this supplement, any symptoms of an infection I might have had went away! I couldn't be happier about the possibility of finding something that will take care of an infection without the use of antibiotics! I don't know if this product will be well tolerated by all IC patient's, but it certainly has been by me. Thank God! By the way, Thanks friends, family and strangers that check up on me.

Bladder Instillation by Cathater

2008-03-22T06:46:00.000-07:00

Well, so far my UTI thing seems to have subsided. Thank God! It's been going on for months and months! I've been trying to decide for quite some time now what other treatment I want to try. I really feel like I am much more open to doing whatever I need to do to feel better. Although I desperately wanted to feel better before, I would never even consider the possibility of medication, maybe some sort of phobia or something of mine. Anyway, I came across a recent forum where a girl had developed IC at the age of 16. She stated that after some careful "thought and prayer" amongst her and her family, they decided that doing the bladder instillations would be the appropriate course of treatment for her. She is now 21 years old and doing quite well. Once I read her article, it was as if I too felt like I could prayerfully consider the idea of the bladder instillations. I decided that this also would be the right course of treatment for me to take. I had my first instillation by cathater last Tuesday, the 18th. The cocktail that I am currently using is a blend of heparin, lidocaine, saline and sodium bicarbonate. It is said that heparin has a similar composition as the mucosal lining of the bladder. The idea is that by putting heparin directly into the bladder, it encourages the formation of a new mucosal lining which is thought to be missing or damaged in IC patients. The formation of a new mucosal lining in the bladder reduces the amount of irritants That come in contact with it, thereby reducing pain. Sodium Bicarbonate (fancy term for sterile baking soda) is added to alkalize the mixture increasing it's permeability into the bladder wall. Finally, Lidocaine is a numbing agent decreasing sensitivity within the bladder. Treatments are given 1 a week for 6 weeks, then 1 a week for a period of time and eventually going into a maintance phase. I will not know if this has helped me or not until about week 10. I am really hoping it does. I would really like to take a vacation somewhere this summer. It's been a long time since I've been able to go anywhere so I am really wishing there will be some break through for me soon.

My New Plan of Attack

2008-03-15T17:10:00.001-07:00

So I am finally at my wits end with these UTI-like symtoms I have been experiencing for several months now. It comes on strong (most of the time out of nowhere), improves with antibiotics and then comes back again. Lately, I've been doing ALOT of research on UTI's and I have found some good info on the use of probiotics for both treatment and prevention of infections. I am using probiotics from a company called "Custom Probiotics" in California. It comes in a powder form and does not have any additives. It has taken many months to find something my bladder could tolerate. Since IC patients are not able to drink the normally recommended cranberry juice, I am using blueberry juice also. So far, it is not bothering my bladder. Recommendations on other health websites are to drink two 8-ounce glasses of blueberry juice daily to prevent the adherence of bacteria to the bladder wall as well as taking the probiotics twice daily. I feel like a broken record always writing about this never-ending infection, but that's the real life struggles of someone living with IC. Let's hope this helps...

The Chronic Nature of IC

2008-03-08T06:49:00.000-08:00

The biggest "beef" I have with IC is this...one day I feel not too bad. The sun is shining and I feel hopeful. I may even feel like a day will come soon when this will all be over. Then, out of nowhere, comes weeks and weeks of inexplicable pain and burning inside. I can't relate it to diet, hormones, nothing! That is what is so frustrating with this condition. The bladder seems to have a mind of it's own and there's not much that can be done about it. What is this mysterious conditions that attacks the bladder and takes on a life of it's own? Hopefully, someday there will be some answers. I have begun to see a new doctor. The way I look at it, I am the one interviewing the doctors for the job of treating me. If I am not happy, I am going to find another one. Patient's with IC and other pelvic pain disorders MUST find a doctor they can build some sort of relationship with. Otherwise, they will constantly end up frustrated and feeling like they have no where to turn. Take it from me, even though I am in the health profession I often times feel like I am not being heard by my doctor.
Maybe the new doctor I am seeing will be helpful. If not, it's on to the next. Continued thanks to the friends and family who actually read this blog to check up on me! I pray some better days are ahead.

The birth of New Dawn Pilates...coming soon!

2008-02-18T16:23:00.000-08:00

Well, I am still going through the whole UTI/UTI symptoms thing. It's frustrating because the only time it seems to feel better is when I am on an antibiotic. I feel now though that I am pigeon-holed into everyone thinking this is an "IC flare-up." This could be something different. Anyway, I made an appointment with a new doctor at Rush University Medical Center. They have a specific program called the Center for Abdominal and Pelvic Health. I am going to place a lot of emphasis on the fact that this whole thing started after a stupid surgery and that I feel like I keep getting UTI's. Hopefully, this doctor will have some good ideas. On a good note...Tom and I just finished our first DVD entitled "New Dawn Pilates-a pilates inspired workout adapted for people with pelvic pain." We are awaiting a response from the owner for the IC Network to see if she is interested in carrying the DVD. Keep your fingers crossed. We are really excited about this. This is the first of what I hope is many DVDs. From all those who have seen it, we have gotten good reviews.

It's back...

2008-02-02T09:47:00.000-08:00

Sadly, this thing that keeps happening to me that feels like a UTI is back again. It feels better when I am taking an antibiotic and worse when I stop. All the tests come back negative but for some reason, continue to respond. I am going back to my physical therapist today to see if she can help the situation any. I have decided that over the next few months I must alter my work schedule. I am really just sort of struggling along right now not getting any better. In fact, my symptoms might be worsening. I decided to seriously think about moving to minnesota and staying with my parents. That is a decision I will hopefully make in the next month or so. I just don't see what other options I have left...

Go Levaquin!!

2008-01-25T21:07:00.000-08:00

Well Levaquin seems to have more or less cleared up the problem. I still have 3 more days of antibiotics left, but so far, so good. Then it's back to figuring out a long-term plan of treatment...

A little bit better

2008-01-23T14:03:00.000-08:00

Well, I survivied yesterday and am doing a little bit better today. I was able to get into my doctor for a "sterile" urine test. That is actually where they cathertize you to take the sample directly from the bladder. Loads of fun... Anyway, I am awaiting the results but they were kind enough to re-write a prescription for Levaquin. Hopefully, this will clear things up.

Up All Night

2008-01-22T02:09:00.001-08:00

Ever since I wrote the last postinig, "A Glimmer of Hope," I have been fighting what feels like a constant urinary tract infection. It's been off and on...now it's on again. I have such a hard, deep ache in the pelvis. It aches so bad that even my legs hurt. I have to urinate constantly. I just missed work two weeks ago for the same symptoms. After a course of Levaquin, if felt better...for a short time anyway. Unfortunately, I am not in a position to miss work again tomorrow. I have such a busy day but I will have to just suffer through it. It's 4am right now and I have been up all night long. Normally, I still sleep fairly well even with IC, but obviously not tonight. I will call my doctor in the morning and beg him for more antibiotics. I can't keep going through this. This is miserable! At least I will be working in an area of the city where there are lots of places to make a rest stop. I keep trying to be positive...but this really frickin' sucks!

A Glimmer of Hope

2008-01-04T18:02:00.000-08:00

Just a note to all who actually check up on me through this blog...I have had about a week of actually feeling pretty good! I usually just write when I am miserable, but I also want to update when I am doing a little bit better. Being the eternal optimist that I am, I am hoping this is a turning point and that some real healing has begun. Time will tell, but for now, I have a smile on my face...

Looking forward to 2008...

2008-01-02T20:42:00.000-08:00

HAPPY NEW YEAR! I always get excited about the thought of a new year. I am the type of person that actually likes to make New Year's resolutions and stick to them. There's something about the change from one year to another in the blink of an eye that always makes me feel excited something unexpected is about to happen, something wonderful! I've struggled with IC for 2 years and every year I feel that same way as I do right now-hopeful. Although I have had some really rough times, I do pray that 2008 will bring some rebuilding and renewal of my mind, body and spirit. I also hope that some new medical advances will be made in the treatment of the mystery that is IC. As for my current medical treatment, I am continuing to see a pelvic floor physical therapist in an attempt to retrain my pelvic floor muscles. Currently, I am not taking any medications except for the occassional oxybuturin when the frequency is out of control. I have an appointment next week with my trusted internal medicine doctor to have her review all the tests I've had done over the last year and get a second opinion. I am more or less starting from "square one." My main mission is to try to figure out how to get the repeated infectoins I experience under control. I will keep the updates coming...

Merry Christmas

2007-12-21T21:55:00.000-08:00

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

2007-12-16T06:51:00.001-08:00

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

2007-11-23T07:10:00.000-08:00

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...

2007-11-15T06:57:00.001-08:00

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!!!

2007-10-27T07:04:00.000-07:00

The same old pattern

2007-10-25T11:36:00.000-07:00

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

2007-10-09T15:10:00.000-07:00

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...

2007-10-08T19:46:00.000-07:00

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...

2007-10-02T15:36:00.000-07:00

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!

2007-09-26T20:42:00.000-07:00

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

2007-09-26T20:20:00.000-07:00

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"

2007-09-22T05:38:00.000-07:00

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

2007-09-15T08:23:00.000-07:00

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?"

2007-08-29T18:49:00.000-07:00

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!"

2007-08-27T15:43:00.000-07:00

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)

2007-08-12T15:42:00.000-07:00

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)

2007-08-09T06:06:00.000-07:00

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.

2007-07-28T17:25:00.000-07:00

Day to Day Fight

2007-07-21T07:02:00.000-07:00

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