Life With Chronic Pain

I have a confession to make. I almost lost it this weekend. And not a comical, lighthearted "I'm-going-to-put-my-toddler-in-a-kennel" losing it. But a sinking-to-the-ground-in-the-kitchen, sobbing, "I-don't-know-how-much-more-I-can-handle" losing it. 

I have debated talking about this in a public forum for a while, because--although I'm a pretty open person with a general lack-of-embarrassment--I wasn't sure if I wanted everyone to know about this more private aspect of my life. But this is a big part of my life, and it's something I struggle with on a daily basis, and it's something that I can hopefully soon get a grip on. So here it is.

I live in chronic pain.

It would make things easier.

 I have a severe case of Interstitial Cystitis, which is a disease of the bladder walls/lining that results in pain, among other things. It ranks as #3 on Prevention's list of top painful medical conditions (to put that in perspective, kidney stones rank at #9). 

My personal pain is a searing pain that feels like acid on an open wound. I pee 15-30 times a day. I barely sleep. I keep myself perpetually dehydrated because it is painful to have anything in my bladder, and then I get kidney stones from the chronic dehydration. Symptoms can vary from patient to patient, but the overall feeling is of having a UTI for life. You've had a UTI, right? Most women have at least one. They suck. Well, Interstitial Cystitis, or IC, feels like having a really terrible UTI every. single. day. Except no amounts of pyridium, cranberry juice, or antibiotics will fix it, because it isn't a bacterial infection.  

  

It's generally thought to be an autoimmune disease, and there is no cure; you can only attempt to treat the symptoms. Some people get relief from the only drug on the market actually indicated for IC. Some people use medications for overactive bladder all the way to allergy medications or some anti-depressents.  There isn't a ton of agreed-upon knowledge about the condition, and it appears to vary from patient to patient. Some people get relief from a simple change of diet. 

left: bladder with IC; right: normal bladder

I, unfortunately, have an incredibly severe case of the condition that doesn't respond to first/second/third line treatments. 

Looking back, I believe I had IC even as a child. I vividly recall waking up some mornings to bladder spasms (of course, as a child, I didn't know it was a bladder spasm; I only knew it was a miserable feeling). I thought they were normal. But then after a while, I finally told my mama that something really hurt. She took me to the doctor, assuming it was a UTI. But I tested negative for bacteria, despite having all the symptoms. I went round and round in this scenario multiple times, each time coming home told I did not have a UTI. Sometimes I would be given antibiotics and pyridium to shut me up, but that was it. I had the distinct feeling that none of the doctors believed my pain and that they thought I was either crazy or trying to get attention. So I finally stopped complaining about it. I stopped going to the doctor, and I stopped even telling my mama, because it just wasn't worth the effort of her dragging me back and forth to the doctor if I wouldn't be able to get any relief. It wasn't worth feeling dismissed.

So I spent years sitting in a morning bathtub of scalding hot water to try to distract myself from the pain I would wake up with. And once I could get a handle on it, I would go about my day. 

And then I went to college. And everything changed. I didn't know why at the time, but my pain started getting significantly worse in Athens. In retrospect, it was probably all the alcohol I was consuming ;)

But I never correlated the pain with food or alcohol until one Saturday morning after a night of tequila shots. I literally thought I was going to die, and not because of my hangover. My bladder pain was almost uncontrollable, and it finally dawned on me that drinking may be making this pain worse, except that made no sense. 

I amended my boozing schedule a bit, but I noticed that the pain only seemed to be getting worse by the day. I remember the straw that broke the camel's back: it was during a weekend when I had traveled to visit Alex while he was stationed in Texas. I woke up on a Sunday morning with my pain out of control, and I was peeing blood. A million other things were going wrong that morning, but I really couldn't focus on anything except the excruciating pain I was in. 

Of course it was a Sunday, and the only way for me to get relief would be for me to go into an ER in Austin. We were supposed to be driving from Austin to Houston that day, and I made the decision to not go to the ER. I decided I would be able to handle the pain. Looking back on it, I wish I'd made myself go to the ER; they could have at least given me pain drugs. Instead, I called my parents in tears, asking if they had any idea what I should do for a UTI on a Sunday (remember, I'm still assuming this is caused by UTIs). They said that I needed to drink a ton of cranberry juice and take some Azo until I could get home and go to my doctor the next day. I vaguely recall someone insinuating that my chronic "UTIs" were either caused from wearing thongs (wtf??) or doing something that "caused honeymoon cystitis," if you catch my drift. I bedrudgingly chugged cranberry juice and made Alex stop at literally every other truck stop on the drive from Austin to Houston. It was at one truck stop that I screamed at the top of my lungs in the middle of about eighteen truckers. I just couldn't take it anymore. Something wasn't right.

I made it home and promptly went into my OB/GYN. She did an exam, and I almost jumped off the table in pain. She said she suspected I had a bladder disease called Interstitial Cystitis, but that a urologist needed to confirm that. So I spent several visits at a urologist undergoing several procedures to exclude other diseases. I had a biopsy, a cystoscopy, and a potassium sensitivity test. Lots of things involving lots of catheters. It was glorious. 

Then I finally got the confirmed diagnosis of IC. I immediately started on the IC Diet, which is a torturous diet eliminating all citrus, caffeinated, acidic, potassium-laden, and many sugarific foods. Oh, and cranberry juice. 

Is that a life worth living, I ask you?

And this is really just the tip of the iceberg.

 Anyway, I did stick with that very strictly for a while with minimal changes. Over the years I have tried literally every drug on the market that could possibly help IC even a tiny bit with little to no improvement. I've tried accupuncture. I've undergone a hydrodistention, which is a surgical procedure where, while you're under anesthesia, your bladder is distended with water and stretched to the point that it almost bursts. I've catheterized myself with bladder instillations (everyone should try a home cath once in her life just for fun!). My most recent experiment was with anti-epileptic medications, like Lyrica and Neurontin, with lackluster results. 

I've seen eight different urologists in the last eight years, and most of them have told me that they simply cannot help me further. I still try to reasonably follow my IC diet (except the sugar part..), and I treat the pain with pain meds some times, but I've exhausted just about everything else there is. I'm still in pain. It's a searing pain inside my bladder, and I rarely get relief.

In a perfect world..

  The thing about pain is that people can only understand and sympathize with the amount of pain they've ever experienced. So if the worst pain you've ever had is a sprained ankle, there's no way for you to understand or truly sympathize with someone's fibromyalgia. 

And then putting the fire out with some battery acid.

This can be especially frustrating when you are suffering from a silent and lesser known condition, such as IC (or fibromyalgia, for that matter..which I am thankful to not have).  People--even doctors--tend to dismiss these conditions because they can't see them or have a hard time diagnosing them due to varying symptoms. The person can only relate to the pain of his sprained ankle, which is like comparing apples to oranges to puppy dogs. It's simply not the same. And you hate to be that guy who is always complaining, so you learn to just not mention it much to avoid bringing the party down. 

Living in chronic pain can get you down. I'm not a depressed person by nature, and I live an incredibly blessed life. I do my best to focus on the positive, look forward to fun events, and live as much of my amazing life to the fullest. This is one reason that I am always undertaking projects and hobbies. I have to keep myself busy and distract myself from the pain. 

 

Because although pain is completely legit, I don't want to live like a miserable cow. I want to be happy. It's hard sometimes, but I make the choice to be happy. I have two amazing little people I have to be tough for.

The pain, however, is bad. IC can result in pain comparable to a patient with cancer or severe rheumatoid arthritis or end-stage renal failure. That's a fact.

And sometimes not getting a break from pain can be heartbreaking and simply exhausting. After a particularly bad week last week, kidney stones, and a Friday night spent in the ER with no answers, I hit a low point and collapsed in tears. 

This is where having a person to lean on is vital. My husband is as healthy as a horse; I think the worst pain he's ever had has been a headache. So no, there is no way for him to fathom chronic pain. He doesn't get it. But he gets me. He's there to pick me up when I fall. And he did. And I am thankful.

 

In sickness and in health.

He reminded me that there is something on the horizon that may be promising:

Next week I will undergo an Interstim procedure, which involves implanting a TENS unit into my back. It's essentially a pacemaker for the bladder. It isn't indicated for IC or for pain, but it does help many IC patients with pain as a side effect. It will be a five-week-long procedure, beginning next Wednesday. I'm at the point where I have nothing to lose, so I might as well give it at shot. I have many emotions about this, but they're torn. Part of me is really excited about the possibility of lowering my pain, and I'm hoping and praying that it is a huge success. The other part of me is terrified. Terrified that this won't work. Terrified that this will be another disappointment. Terrified that I've run out of options and will be forced to live the rest of my life like this. 

I'm not writing this to elicit your sympathies or get attention or have a pity party. I already have myself a pity party every couple of months--you're invited; there's cake.

I draw the line at hiring strippers.

I am writing this for a few reasons--partly for myself. Because it feels good to just get it out there. I'm writing this partly for you, my friends who read this regularly. I feel like it isn't fair to write a blog featuring pretty cakes, upbeat language, fun projects, and cute little beasties, but to act like my life is perfect. This blog is a reflection of my life, and it feels dishonest to completely leave this huge part of my life out. 

And I am writing it partly because I'm hoping maybe it will help somebody. If one person reads this, and it rings a bell and prompts her to seek help, then my writing this will have been well worth it.  

 

Maybe you have this terrible condition and don't know it. Or maybe you have IC and don't have many people who understand. Or maybe you have a different condition that leaves you in pain. I am writing this to tell the person who suffers with invisible chronic pain and feels like nobody understands it--I see you, and I understand it. 

Hang in there. Keep fighting.

And keep on keepin' on.

-Annette