One of the things I promised myself when starting this blog was to be completely transparent. It would be easy to write about a seemingly blissful life and leave out the dirty details that make it a reality. But at 44 I’ve found that it makes more sense and is a million times easier to just be up front about who you are. So here is a little bit of life unedited and it comes with a TMI warning.
My life is one lived pretty much on the go at all times. With four kids, most days are spent juggling my work between school and sports activities. There was a time when a back injury slowed me down tremendously, but with the help of my doctor I have found treatment that helped me manage my back issues and get on with a normal life, until recently.
One day, this past July, I was at work watching my team kids warm up when I was hit by a blinding pain. It literally dropped me to my knees. Luckily, my coaching partners were very supportive and able to take over the practice while I made my way home. Once there I called my doctor, thinking the pain was probably a ruptured ovarian cyst. In my mind I thought that I might be down for a few days then right back to things as usual. Boy, was I ever wrong!
A few days turned into what has now been almost five months. While I did have a ruptured ovarian cyst, once it was gone I still had an incredible amount of pain and pressure. My obgyn began testing and trying to treat what turned out to be a double infection that lasted three months, but it didn’t end there. Even after the infection I found myself up all night, unfortunately my bladder was now in control and had kicked into high gear. Being the fix it person that I am, I went to my doctor who was tip toeing around a diagnosis and told him to do the next procedure to figure out what this was so I could make a plan of attack and get my life back. So into surgery I went and I came out with a diagnosis and a tough road ahead.
This very weird picture above is of the inside of my bladder. The doctor told me I have something called Interstitial Cystitis. So to the internet I went to find out everything I could about how to end this quickly. And there is where my spirits took a little dip.
You see this disorder doesn’t have a simple fix. It has a combination of factors that make it a chronic disorder that can go into remission, but also has flares that can last for days to even months. As it turns out when this thing rears it’s ugly head the signals in the brain from the bladder to the pelvic nerves get mixed up. So trying to gauge if your bladder is full or how long you can make it before having to pull over and find a rest stop on a long drive becomes a tricky game to say the least. The lining of the bladder thins out and is no longer protected from the toxins in your urine. This leads to lesions and ulcers in the bladder and believe me it hurts.
While the causes of IC are unknown, there are several theories out there. It is believed to be a manifestation of several factors including auto immune, genetic factors or a reactions to infection or allergy. Everyone suffering from IC has a root cause, but that is often difficult to trace or determine. The more I read and reached out to people dealing with this around the globe the bigger the scope of this entire thing really became. There are more than 4 million people in the United States alone suffering from this disorder, and yet there is no cure. There are differing beliefs on the type of treatment that I have found vary from doctor to doctor. When you talk to these people who are all of different ages, races, sexes and backgrounds one thing remains constant: this disorder is painful and for many debilitating and yet finding a medical professional who understands the full grasp of this, much less believes the patients wholeheartedly, is extremely difficult.
Where does this all leave me? Well some days are really good. I have days that are fairly pain free. But, they now tend to be sandwiched in between several really painful days in which I find even moving difficult. I have switched specialists to one who seems more in tune with my particular body and root cause, but even there we have hurdles to get over. This week I begin what will be six weeks of treatment. Every body reacts differently to it, so there is no way of knowing what mine will do. But, I finally have a name of what I am fighting and I have a plan. For me that was the biggest thing…getting past the unknown.
I’m not going to lie. I haven’t been the most well behaved person through this ordeal. I’ve probably missed more work than I should have. My patience with my children has been tested. And I’ve snapped at the people I love most in my own frustration. While there were plenty days that I was in high spirits over the past four months, there have been a fair share that were laced with curse words and tears. Sometimes I leaned on the ones close to me and sometimes I would just flat out hide to avoid having to even discuss it.
So what have I learned? A lot. For my entire adult life, and some rather iffy teen years, I have had an incredible sister in law that has been my guide. Through this roller coaster she has shown me by example that a little grace can carry you a long way and sometimes laughter may be the only medicine you’ve got so be willing to laugh at yourself…often. My best friend reminded me, well hammered into my head actually, that I don’t always have to be perfect and it’s alright to need help. It really is okay to lean on the people around me because that’s what love is…helping each other through the good, bad and sometimes ugly truths of life. She has always encouraged me to share honestly with my children not just my triumphs, but also my hardships because I have raised them to be open and caring individuals. Of course she was right on that. When I could no longer hide what I was dealing with, these wonderful beings embraced me with love and laughter and have charged forwards through this with me, helping me when they could and loving me when that was all that could be done.
In the days ahead there are sure to be more obstacles as I continue to deal with this disorder, but I am lucky. There is this incredible tribe that I have surrounded myself with at work, at home, and in every aspect of my life. They pick me up when I fall down. They dust me off and shove me back in the game when it’s needed. They let me cry when I can’t hold it back, but always encourage me to go on. Sure there will be days like yesterday, when I can’t get out of bed and I’m dropping “F” bombs at the mere frustration of it all. There will be days like today when I acknowledge the pain, but know I not only need to push through, but want to. Just like today I will wash my face, throw on a hat, a smile and maybe a little lipstick to distract others from the circles under my eyes. But I will get up and I will get through the day because I have to…because every face that is a part of that day reminds me how precious this all is. There will be days when that certain sister in law and I, while miles apart, will get on the phone and laugh ourselves sick at the utter ridiculousness of it all as we play the daredevil game of who can make the other one laugh til she pees. And yes, there will be days when there is not an ounce of pain and I can revel in the little things, the big things, the loves and friendships around me and be reminded that I am here for a reason. No matter what, with a little grace and the occasional “F” bomb…I know life will go on.
Yesterday's Bliss 