The End of an Era

Interstitial Cystitis has been such a huge part of my life for so long that in some ways it has defined me. I have been known to chant “I have IC, I am not IC” while standing on my biggest soap box and waving around a flag with a cartoon bladder (metaphorically speaking of course, what do you think I’m a lunatic?) but no matter how much I wanted my stance to be true it really wasn’t. I don’t know what determines your most defining trait in life. For some people it’s their job, their title, their relationship, or their family but for me it’s always been my illness. I’ve been known as simply the “sick girl” by many people. This disease has forced itself to the forefront of my life so in many ways that is what my life has become. My IC. 

Since starting this blog over 2 years ago this definition of me has only deepened. I found myself fully immersed in the world of IC. Many of my best friends were women who also struggled with IC, a good majority of my friends on facebook were fellow IC sufferers, I was involved in multiple IC support groups, I wrote about IC, I talked about IC, people asked me questions about my IC, and so on. I couldn’t escape it.

Whether I liked it or not, I was my IC…

However, as with anything, being defined by just one thing can be risky. Once that changes or ends you are left undefined. Since my radical cystectomy (total removal of my urethra and bladder) 3 months ago I have found myself confused as to who I am. If I was my IC and I no longer have IC then where do I fit, who am I?

I’ve considered writing and posting updates about everything that’s been going on in my recovery and my life but I am confused because my blog is about my life with IC and I do not have a life with IC anymore. I have been miserable, confused, scared, alone and all I wanted was to talk to the ladies in the multiple IC support groups but I don’t have IC anymore, I don’t belong. I even feel unwelcome in the IC support groups that I started and once moderated, how could I talk to them? It wasn’t the same anymore. What is a support group if not a group of people who are going through the same challenges? 

So I am in this weird limbo, a purgatory of sorts. I don’t have IC anymore but I’m far from being well. I am still in the deep trenches of recovery but I don’t have any bladder symptoms anymore.

I feel like a nomad looking for a place to settle and call my home. I would really like my home to be wellness but I’m a realistic sort and try not to give in to lofty goals. I believe I will be well some day but most likely later rather than sooner. 

When I started this blog it was really more to update all my loved ones on my health in one fell swoop and although it exploded from there I know that my most loyal readers aren't sufferers of IC but people who love me. So, even though this has hardly anything to do with IC here is just a quick update… 

Everything is pretty much on schedule. It’s been 3 months since surgery and I can see a little progress each week but I’m still dealing with lots of things that go along with such a major surgery. I get horrible cramps that leave me bent over and gasping for air. I have lots of pain all over my pelvic floor area from the massive remodel the doctors preformed. I get shooting pains in my abdomen regularly. My stoma is still adjusting to its new job and fluctuates a lot. I am still getting used to having all the ostomy supplies attached to me 24/7 and I struggle with trying to find the perfect wafer for me. I can look at my stoma with hardly a twinge of repulsion, I can change my bag and wafer by myself very easily now. I haven’t had an ounce of “phantom pain” or anything like the pain I dealt with for 15 years before this surgery. I am down to 2 narcotics a day but I am hoping to start the process of weaning to 1 a day soon. I have chronic nausea that I’ve always had and new bowel problems that I’ve never dealt with. I am still getting used to my body’s new extreme need for lots of fluid and I disappoint it most days with not enough. I can walk and do most things on my own now but I still can’t lift anything above 20lbs. I am always exhausted, whether I’ve had 3 or 15 hours of sleep in a day I can never shake the desire to cuddle in my bed and sleep. It's very unpredictable when I will feel okay and when the pain and exhaustion with overwhelm me.  When I started physical therapy I could barely walk, do exercises, or even be touched without extreme pain but now I ride the bike for 10 minutes each session, do multiple exercises, and I can even withstand manual work that helps my tense muscles relax. I have wonderful doctors and a fabulous God given gift of a physical therapist.

So it's an interesting time full of a thick combination of challenges and triumphs. It's similar to my incisions… They’re healing and looking better every day but they are still bright red and very tender to the touch. Some day my scars will be barely noticeable and I will be healthy and full of wonder of my new life.  

Truthfully I feel like if I had not been so sick and miserable for so many years I would be on the verge of being murderous but comparatively I'm doing pretty well. I just feel a heavy weight of expectations from myself and my loved ones. I feel like there are so many expectations of me. This surgery was supposed to give me this grand, healthy life and 3 months later I’m only a little bit ahead of where I was before surgery. I push when I can but there are days and things that I truly just cannot do. It’s disappointing and frustrating for everyone. 

December 30, 2013 was when my IC went from bad to unmanageable. My bladder stopped functioning, it was in full retention and the pain was truly unbearable. So when I say this year I literally mean all of 2014 has been about my pain and broken body. I have been telling myself to just let 2014 be a year of recovery and healing but it’s difficult to just take the moments as they come when the moments are so painful. My hope is that by 2015 I will be well and mostly recovered. They say its 6 months to a year to recover from this surgery if you started out completely healthy before…Which I obviously didn't. No one is expecting me to be living a normal life yet. I just have to remind myself of that from time to time. I’ve had 29 surgeries before this one that were 6-8 weeks of recovery so it’s easy to forget that this is a totally different situation. 

Clearly I am in a new stage of life, I no longer have a chronic illness I have an acute recovery that will be over some day. Now that I’m in this new phase of health I have decided to retire this blog. I will leave it up for people in the future who are fighting battles that I’ve fought before them. I will check it occasionally and try to answer any questions that I can. What I was struggling with 2 years ago and is completely irrelevant to me today is what someone else is trying to conquer right now. I’m humbled by the fact that “How IC It” still has daily views and regular comments. I love this blog like a child that I birthed and raised but like with a child, you have to know when to let it go. I have held nothing back along this journey but my struggles and triumphs are just not relevant to this blog’s platform any more.

When I started this blog one long, painful, lonely night over 2 years ago I never could have imagined that it would have 40,000 views from readers all over the world. I never could have guessed how many people would call me brave and selfless for sharing my story. More than that… I never in a million years could have predicted how much it would help me get through, cope with, laugh off, and fight.

This blog has done so much for me. It gave me a voice when things seemed too unjust to bear. It gave me a purpose when I felt completely useless. It gave me perspective when my typing fingers wrote what I didn’t even know I was thinking. It gave me a support system of other IC sufferers that I could have never built on my own. It gave me a place to write when I just needed to sort things out. It gave me a way of communicating to the masses when I couldn’t handle talking about heart wrenches obstacles over and over. It gave me confidence in my ability and gift of writing. 

I could go on for days… This blog has been an amazing, life changing gift to me.

I’m so thankful for all the encouragement and support of every single reader, whether you’ve read one blog or every single post. I guarantee I would have given up on this long ago if it weren’t for all of you... Thank you for forgiving my long rants, my innumerable complaints, my typo’s and errors, my dozens of pictures, my distractions, my wanderings off subject and blogs that made little sense to anyone else.

I have this vision of me in a deep pit (like on the Pooh movie, yes I have a toddler) and you all are at the top all lined up pulling a rope lifting me out. Not just once but over and over. Most people would have tossed me a ladder and told me to stop getting in the pit or figure it out on my own but you all put your own selves into saving me so many times. Thank you.

Lastly, September is IC awareness month, find your favorite blog of mine and share it on facebook or twitter. Tell people about this horrible disease and even donate if you can. I lost 15 years of my life and my bladder to this horrible disease and there is a huge need in this community for research and treatment options.

I have some ideas of writing projects to take on next, keep an eye out! Until then... over and out, see ya later alligator, au revoir, adios, farewell, hasta la vista, peace out, arrivedercie, cheers, bonjour, ta-ta, Godspeed, goodbye, take care…