First Post or About Me and my Blog

                                   

If you are reading this and don't know what Interstitial Cystitis (IC) is, consider yourself lucky! IC, also called Painful Bladder Syndrome (PBS) is painful, frustrating, and, imho, almost just plain evil (in fact, in the worst cases, the pain can be equivalent to that of a stage 4 cancer patient)!  Try to imagine the worst migraine you have ever had, then move that pain to your pelvis, add urinary urgency, frequency, and painful urinatian, and you pretty much have IC. (It's like a UTI that just won't go away.)  Add to that the fact that IC is only treatable (it can't be cured), the cause is unknown, and flare ups of symptoms can be caused by anything and everything - I wouldn't ever even wish it upon my worst enemy!!

In October of 2014, I went to the ER for the second time in as many months for lower urinary tract symptoms and after a few tests was diagnosed with Interstitial Cystitis.  This marked the beginning of a long, trying period of my life.  After reading that it can take some people years for some patients to get diagnosed with IC, I thought I was lucky to have a diagnosis so fast, but it turns out that that's where my luck would end.  I would end up spending most of the next six months in near constant pain, trying to both teach myself about the disease and trying to treat myself.

 When I first went to the hospital in September, they had automatically signed me up for temporary Medicaid.  This seemed great at the time, but apparently doctors in NJ don't like to take straight Medicaid and because I was only on it temporarily, I was not eligible to pick an HMO.  I tried to get different insurance through the health care marketplace, but since I was being covered by Medicaid I couldn't sign up for affordable healthcare (which I had tried to do at the beginning of the year but I wound up having problems with the system and was unable to do so due to problems with the system). I was only able to find one urologist who accepted Medicaid in the whole of Northern NJ (and also found out that no orthopedic in the state accepted straight Medicaid, so I could not get my shoulder looked at, which I had also gone to the hospital for and was having problems with) and scheduled an appointment for 3 weeks out.  When it came time for my appointment, however, the doctor refused to believe the diagnosis of IC because I was a male and the diagnosis wasn't made by a urologist.  He even did a Cystoscopy a month later in which both he and I could clearly see inflammation in my bladder, but he still refused to believe I could have IC.  He just began throwing pills at me and trying to treat things that I knew weren't wrong.  I did my own research, learnt about the IC diet, and did what I could at home to help myself as if I did indeed have IC.  Eventually, this urologist more or less tried to just write me off.  At my last appointment he tried to refer me on to another specialist and prescribed me Elmiron (the only oral medication approved by the FDA to treat IC) almost as an afterthought when I kept stressing certain symptoms.  I decided to try the Elmiron before calling the specialist and low and behold it worked like a miracle drug for me!  A week after starting it I noticed some of my symptoms beginning to get better and my pain was certainly lessened.  A month later I felt almost normal again, with just a few twinges here and there, but nothing too bad that I couldn't ignore it.  I was able to keep my symptoms at bay in this way for almost 8 months. 

Over time, I began to forget that I had IC.  I started to slip on the diet more and more until I was eating and drinking as I was before the diagnosis.  Then I had to have shoulder surgery and I had to stop Elmiron before the surgery as it can act as a blood thinner.  My routine got thrown off and I wasn't always taking my Elmiron as I should after that.  I couldn't cook, so I was eating a lot of frozen meals, prepared meals, and was ordering out a lot.  I was no longer living as if I had IC at all and I paid for it by having the worst flare up that I have had since the beginning. I'm still recovering from this flare up even now and it has made me realize that I can't keep pretending that the IC doesn't exist.  I vowed to myself that I would get back on the diet and back into remission!

So here I am, once again facing this huge thing that is the beast of all diets.  It seems frustrating and hard and I want to give up before its all begun, but that would only lead to me constantly relying on pills for pain relief and I'm not sure that that is the best life to lead.  So I'm going to try this thing, I'm going to do my best to try to make this diet thing work and hope it leads to some relief.  After all, I do owe it to myself to try.  I know there will be bumps in the road; after all, tomatoes and tomato sauces are my favorite things in the world; heck, I actually get cravings for tomato sauce, I sometimes think that I would be happy just eating it straight from the jar!  They just so happen to be one of my biggest trigger foods too....  And although I love Morninstar Farms and their products are so convenient, my boyfriend thinks that their salt content, which I never really paid attention to before, may be what led to me developing hypertension, so maybe it is best that I keep those things to a minimum.  So maybe this will be better for me overall, maybe I can do this thing and help myself in more ways then one!  Whatever the outcome, I invite you to join me on my journey as I post my progress and new recipes, insights, and tips along the way!