It’s About Time

I’ve done a few guest posts lately, where I explain my story through an interview with the authors, and it just dawned on me I have never told you the full story here, on my own blog.  Whoops!

(btw – there is a great River and Quill community growing over on Instagram! Be sure to subscribe here and join us there).

Now, I hesitate to call it my “story”, because the truth is, Interstitial Cystitis is only one part of a much bigger story.  

I’ve tried to articulate how I would rather be seen as chronically well, than ill, and how living in a diagnosis is not something I have chosen to do. 

Who I am is much deeper, much wider,

and much more complex than a screwed up bladder.

All that being said, I have found that some of you are curious.  You want to know what all this bladder stuff is about.  So, I will finally oblige, and give you the knitty gritty details. 

The Beginning

Due to raging health anxiety, I know just about every disease there is known to man (and dog, and cat). 

Additionally, I have worried I have had at least half of them, including Epidermodysplasia Verruciformis.  This is where warts cover your entire body, and it is caused by HPV.  I have only ever had one or two warts, and I do not have HPV, but in a moment of panic, someone with health anxiety can be sure of their eventual doom with only minimal evidence.

Oddly enough, Interstitial Cystitis was one of the few diseases I knew nothing about, prior to it obliterating my bladder.  

For those of you unsure what it is, it is defined as,

“An unpleasant sensation (pain, pressure, discomfort) perceived to be related to the bladder, associated with lower urinary tract symptoms of more than six weeks duration, in the absence of infection or other identifiable causes.” 1

It was the middle of the night (the beginning to every good horror story). 

I was thirty-two, my third baby (and final) was six months old, and I had been up nursing her and noticed something from down under didn’t feel quite right.  I was sure it was a urinary infection, and decided I would call my lady doctor’s office the next day to get in and get on some meds.

After some uncomfortable conversations with my four-year-old son upon him seeing a diagram of a vagina at my appointment, I was told to try an antiobiotic, but they would test my urine sample and let me know on Monday if it was indeed an infection.  

I started the meds with no noticeable difference.  Monday came, and I found out I did NOT have an infection.

Vagina Therapist

I was then sent to a pelvic floor physical therapist’s office.  Ladies, they have physical therapists for our vaginas.  Were you aware?  Yeah.  Me neither, until my va-jay-jay started to rebel. 

Every new mom in France gets care for their lady business after they have a baby.  Here, you only hear about it if you have issues. 

After a week or so of therapy, I asked my vagina therapist if I could have something wrong with my bladder specifically. (Vagina therapist is the name I have given the physical therapists who are highly trained and I mean absolutely no disrespect by using it).

She was the first person to tell me about Interstitial Cystitis.  I immediately got in my car and googled the symptoms, and found the definition you read above.  My symptoms fit the definition perfectly.  

The Urogynecologist Appointment from Hell 

I set up an appointment with a urogynecologist. 

A month into the symptoms, I had a cystoscopy done in his office, which is a camera inserted into your urethra, along with twenty gallons of what feels like acid water (it was not even close to a gallon, but it felt as though my bladder would burst at any moment).

I watched on the screen next to me as the camera revealed the tell-tale red spidery lines covering the wall of my bladder.

After the procedure, I was given a one page pamphlet on the foods I could no longer eat (they included chocolate, coffee, and alcohol of all kinds). 

I’m really not sure what hurt more: the pain from having a camera shoved up my urethra, or the fact that I may never be able to drink coffee again.  

I left the appointment and went home to three small children who needed me, and I wasn’t sure I could go on.  

If you want to read more about the depression I experienced with this diagnosis, check out this post.  

The Never Ending Story

I think I’ve shied away from the whole “IC Story” post because it is absolutely impossible to encapsulate in less than 1,000 words all that comes with a chronic illness. 

It wasn’t one day, one feeling, one thought, or one event which sums up the experience.  It has been so many different things.

The journey has been long, and it isn’t over, because, did I mention, this is chronic?  But, I do have my symptoms under control.  I rarely feel my bladder anymore and when I do, it doesn’t ever get to the intensity it was before. 

It took over a year for the symptoms to start to subside, after I started on a drug called Elmiron.  I also started to invest back in myself and took an hour a day on self care, which any mom with littles knows how difficult this is to fit in.  As hard as it was to find the time, it was paramount to the healing process.

Gradually, with a host of different treatments, which you can read more about in Interstitial Cystitis First Aid, I got better and better.

Today, I have my life back. 

That’s really why I’m here. 

Why I Write

Writing has always been my calling and my release.  When I was eight, it helped me process the grief from the loss of my great-grandma, as I scribbled all over my Lisa Simpson journal. 

When I was sixteen, it helped me survive losing a best friend, breaking up with boyfriends, and all the insecurity that comes with adolescence as I cried angsty tears over the ink in my leather journal and blasted Alanis Morisette, under the iridescent blue light. 

And when chronic illness hit, I’m confident writing is what saved me from the depression brought on by the pain and isolation.  I started writing and I kept writing, bit by bit every day, and then I had a book, and then I started feeling better, and now, I still write for myself, but also, I write for you.

I don’t think what happened to me was ordained or purposeful. 

I do think I can bring some purpose out of it by helping those of you who may need it. 

Maybe you need to hear that there is hope.  Or maybe you just want to know you’re not alone.

Either way, that’s why I’m here. 

I’m here to tell you my story, yes, but,

what keeps me writing is knowing what I write could help you write your own story into something you may want to read some day.

So, that’s where I’m at!  After almost three years of having IC, I am doing very well, with occasional flares, but it was gradual. 

Healing is so gradual and all over the place, but I’m here and I’m growing, and I have more to learn and more healing to do, and although it’s not a part of my story I would have every wished upon myself, the lessons I have learned would have taken two lifetimes to learn in a normal body.  

What is YOUR story?  I’d love to hear it. Comment, or send me an email!  And please be sure to subscribe so we can walk this crazy life together.  Thanks friends!

References:

1Hanno P.M., Burks, D.A., Clemens, J.Q., Dmochowski, R.R., Erickson, D., Fitzgerald, M.P., Forrest, J.B., Gordon, B., Gray, M., Mayer, R.D., Newman, D., Nyberg Jr., L., Payne, C.K., Wesselmann, U., & Faraday, M.M. (2011). AUA guidelines for the diagnosis and treatment of IC/BPS. Journal of Urology, 185, (6), 2162-2170.