New Blog

Thank you so much for checking out this blog! After many years of battling with several chronic illnesses, Interstitial Cystitis just being one of them, it became apparent that something much more serious was occurring in my body. This year, I began treatment for Lyme Disease, in which Interstitial Cystitis can and often is a part of. To chronicle my health journey, I have created a new blog: theroadlymetraveled.blogspot.com Please feel free to follow along as I hopefully regain my health once and for all. Sincerely, Jenny

New Dawn Pilates is Finally on Facebook!

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

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!

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

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.