It’s been awhile: Update

Wow it's certainly been a long time since I've written a blog or logged on here. Unfortunately losing my password and the entire merge of google/blogger can be the blame for that. but thank goodness I finally was able to contact someone to get back in my blogger! But besides that, I feel like I have a lot to share as much as happened since I haven't been without struggle that is for sure, but if you have IC, you probably already know that. This time in my life will likely go down as probably one of the hardest years in my journey with this thing called "IC."

I can't exactly recall the exact day when things started to go downhill, but it seemed as though it simply happened overnight. One moment I was struggling with daily pain and the next it became extremely debilitating. 

At first I thought it was just Stress related as my Grandfather's death brought with it countless hearings to attend from summer of 2012 to the beginning of 2013, but I was wrong.

In late Spring of 2012, I decided to get a second opinion from a well recommended Urologist, Dr. Parkhurst. I had my first consultation with him and found him to extremely thorough, which is always good with a specialist. I just wanted to get another specialist’s opinion on my case, despite already having a wonderful urogynecologist that I’d been seeing since May 2008.

So with my first appointment came a variety of tests, bloodwork, CT’s and some medication changes along with a scheduled cystoscopy under anesthesia. The cystoscopy revealed what I already knew; I had interstitial cystitis and my bladder was extremely vascular with quite a bit of inflammation.

The dr gave me a few options to try, and since I'd already tried many of the medications offered, it left me with pretty much nothing except surgical treatments like the pudental nerve implant and continuing a regimen of intense physical therapy with a specialist.

After my stint with Medtronic interstims back in 2009, I decided against any sort of foreign object in my body simply because I figured I'd already been down that road.

And the more I thought about returning back to PT, the more it became difficult to get out of bed. Yes I was tired, I felt lazy, but not because of just anything; I was physically and emotionally drained from chronic pain. But it had become more than just chronic pain, it became a job just to move.

So I made a conscious decision to take a break from treating my IC on its own and treat the entire 'picture' in terms of my immune system. I started a newly released infusion drug for my Lupus in early May of 2012. It was a drug that worked much like chemotherapy targeting the B cells in my body in hopes of reverting my body's immune system from attacking itself, but sadly after about 8 rounds I was done with it. I began to feel much sicker on the drug than without it, not to mention the increased urinary tract infections.

Honestly it felt like one nightmare after another, because during this time I was also sent to a GI specialist due to abnormally high liver enzymes, which was attributed from the use of numerous years on methotrexate (chemotherapy drug). The specialist ordered a liver biopsy and sure enough I had liver damage. But I honestly wasn't concerned about that because the procedure itself was much more traumatizing than I thought.

Meanwhile, my bladder was growing increasingly ‘angrier.’ Symptoms i'd never dealt with before began to appear and before I knew it, I went to having to self from once or twice weekly to anywhere between 12-15 times a day. I also developed an intense lower backache that never went away and quickly made walking difficult along with the deep gnawing pain in my pelvic region.

I was completely and utterly exhausted from the pain that just did not seem to be controlled by any of the medications I was on. It’s one thing to have an “off day” or “off week”, but this was nothing of the sorts. Every single thing about these intense, painful symptoms was off.

Before I knew it, I wasn’t able to barely get out of bed, this debilitating pain had taken over my life. And honestly it wasn’t something I talked about or wanted to admit to anyone. It’s really difficult to be open about your lifestyle when something you have a chronic debilitating condition affecting your bladder.

It is so easy to be misunderstood and your pain to be overlooked, because realistically “you look perfectly fine on the outside, it is only your insides that proves you’re “on fire.” And honestly, until you’ve been there, you can’t really understand it. There were many times I wanted to go out, spend time with my family, take my sister out for ice cream or to the gym, but more importantly I wanted to attend support group meetings where I figured people understood me the most and my struggle.

Being in my twenties in this shape wasn’t what I imagined, but then again this pain wasn’t new to me. I just had hoped within the last 6 years, somewhere along the line I’d find some quality of life.

And I can honestly admit that these were some of my darkest months, from around late July 2012 to May of this year. A time I needed support the most and yet, I chose not to reach out. I was depressed, in pain and now completely isolated, despite having the support of my loved ones just beyond my four walls.

And in the beginning of this year I did find out one of the main reasons as to why my Interstitial Cystitis had suddenly become so much worse than it was before. After a long gap between my Botox treatments into my bladder and pelvic floor, I decided to give it another try in late January. It was during the surgery that my urogynecologist discovered some ‘odd’ looking lesions on my bladder wall, which he would biopsy and find that I had hunners ulcers.

This wasn’t what I was expecting to hear, but it did answer some of the many unanswered questions i'd had as to ‘why’ I'd had been having increased amounts of pain. Besides that, the Botox surgery wasn’t making a dent in the symptoms. So once again, I was back at square one, but like I’d done in the past, I began to research treatment options on how to treat those with this type of “IC.” 

I remembered in the past, hearing about the two types of IC, but always was told that I had the ‘classic’ IC with the glomerulations or pinpoint bleeding. And now here I was having to learn all over again how to cope with the disease that had ‘two faces,' not to mention being in the very small percentages of those with this type of IC. The ICA further confirmed by fears as it reported that "[a]bout 5% of IC have persistent symptoms for more than 2 years and 5% have end stage disease defined as very hard bladders with low capacity and terrible pain. [Finding that] [m]any of these patients have hunners ulcers.

It didn’t take me long to find one option that I felt would at least me give a chance at some relief.I discovered One night while looking over some literature online, I found a site for for a New York Urology group discussing various treatments for hunners ulcers. It was a treatment known as 'fulgaration' or nerve ablation, which involved lasering the hunner lesions off the bladder wall so that the inflamed tissue would be removed.

And so armed with this information, I took it to my specialist to discuss if it could be done while I was at my post-op. Because it being a specialized procedure my doctor felt it would be better if I was to a specialist with more experience of in dealing with the fragile bladder wall. 

So in late April, I made the appointment to see the specialist where I discussed the 'fulgaration' surgery and also heard another doctor's opinion on my case. He explained that i'd pretty much done there was left to do besides drastic surgeries that required resectioning my bladder or completely removing it IF this laser surgery did not help. But this was one option I completely wanted to avoid at all costs...

With this new information, I was both scared and desperate for this surgery to help because with my odds, a treatment actually doing what it's intended to do was slim in my case because in the past everything seemed to just help for such a short period or be a total 'flop.'

I had tried many of the holistic diets, supplements and natural approaches, even going as far as weekly acupuncture sessions, but each one of my specialists told me to approach them with caution simply because nothing comes without risks even in the 'natural' side of medicine. Heck who knew taking supplements with your daily medications could be counter-productive to your health if you aren't careful?!

So I reached out in prayer; I asked that God would give this doctor the power and knowledge he needed to aid in giving me a better quality of life. Everyone has their own intimate relationship I wasn't going to go into the surgery with false expectations or the idea that he was going to 'cure' me. I just knew that I needed this to help...

And coincidentally enough I would get a call from my urogynecologist himself telling me that he'd recently gone to a conference with Harvard physicians and the subject of treating hunners ulcers by the use of laser was touched upon because it was found to be helpful for some patients with these debilitating lesions. Therefore, he told me he'd be willing to try doing the surgery, but since I already saw the other specialist he sent me to, he told me that he would let him do the surgery first and see how well my body responded before he'd make the decision to continue them himself.

The surgery was scheduled for May 20 at St. Anthony's Hospital. I was hoping that I could make it until then, but the pain continue to grow increasingly stronger by the day. And before I knew it I was calling my Dr.in the wee hours of the morning on May 12 in tears from the bathroom floor because I didn't know what to do. I had exhausted all the tricks in the bag that I knew of and nothing was touching the pain, not to mention I could no longer self-cath myself because I was in such a flare that it was nearly impossible.

 It isn't often that I want some sort of hospital intervention as I prefer to deal with things on my own because we all know that living with a chronic illness, learning to handle desperate situations is something we learn to deal with, but this time was different.


So in the early morning hours, I was admitted to OU Medical Center where my pain was treated with the use of a 'PCA' or pain pump and essentially could find some relief until my upcoming laser surgery took place.

I am so grateful that I have such a great team of doctors who truly care about their patients health and wellbeing. I believe that a knowledgable doctor is a must when you deal with a complicated condition, but also having a compassionate bedside manner is also a plus when times get rough. And going above and beyond what most doctors do gives me the strength to keep my positive attitude up despite the situation I was in.

And so my doctors and I worked towards getting my pain levels down feeling so I could go back home to my own comfy bed. 

I would be in the hospital for about 4 days. As much as I hated being there, I am happy to say I received great care. There was no way that I could have got through those days without the aid of my doctors.

And all the while, the amazing support system that I have is what kept me going through this difficult time. My parent's have been supportive since I first got sick and I thank my lucky stars for them daily. Even in their retirement years, their kids are never far from heart and they visited me daily.

It made me truly realize who I could count on during such trying times.

Finally May 20 (yes the day of the deadly tornado) rolled around, the day I had been anticipating for years it seemed. I was nervous, but anxiously ready to feel better. 

After the surgery, I was discharged about 1:30pm from the hospital where the procedure was done at only to be admitted back at OU Medical Center later that night by my urogyn for pain control and to recover from the surgery itself.

In between this time, my family and I would find ourselves in a scary situation as the deadly tornado that would later devastate our town headed into my area. Just as we pulled into the garage, we only had about 5 minutes to gather up our dogs and seek shelter before the F5 crossed the I-44. My dad and sister would go in our above ground store shelter, while I refused because I was in too much pain to stand. I was not really thinking as I was still in my 'anesthesia' fog so I chose to grab my mini dachshund, rosary and curled up on the floor of my mom's walk in closet. And of course, my mom didn't want to leave me alone, so she just laid down next to me and we prayed. I can still hear that sound as the lights flickered and the power went out.It sounded like a freight train and I kept bracing myself for something, but just as it came, it was gone. The sun was shining outside and we were all fine, and our house was spared, while many others were not so lucky. I thank God that he was there with us that day.

Focusing back on my recovery, I would have another 4 day stay in the hospital, but in my eyes it was all worth because it helped me see relief in time.

But quickly I start to see improvements a few days after in terms of my bladder pain and that deep gnawing feeling in my pelvis. I also for the first time in almost a year and a half could void on my own. With just this, I felt like I had made the right decision and knew that things would only get better. 

I've realized that nothing happens overnight and that I just need to be patient with myself. It's just another reason to never give up and to advocate for yourself because when you are involved in your healthcare, it makes all the difference. 

A huge thank you to everyone who helped me get this far and helped me through this rough 'patch.'