Here I Am Alive

           30 years old.  My first thought about turning thirty was that maybe doctors will finally stop saying “you’re too young to have had all of these problems.” I’ve officially hit the age where my medical history is now acceptable vs. the era of the 20s, where no one that young should have endured what I’ve gone through.
            If I added up the sum of all my experiences of the last 30 years, I feel as if I could write a book.  I’ve been incredibly blessed, but I’ve also been inarguably cursed, and year 29 has been the toughest.  To celebrate this new decade, we had a low-key get together at my sister’s home, with her brother-in-law, my stepson Connor, Jackson and my husband.  While they (with the exception of Connor and Jackson, c’mon, I’m not that cool of a mom) were able to day-drink all day with their Trulys and Bud Lights, I could not. My food was prepared differently and I was unable to enjoy my sister’s famous pineapple casserole. I indulged with two mixed drinks (Vodka and tonic water are the “safest” IC alcoholic beverages) and cake with artificial coloring.  This, of course, did not come without a punishment.

            I woke up in the middle of the night in some of the worst pain of my life, barely able to move.  The day following was horrific, and while I wanted to simply enjoy one day to pretend I was normal and make Ben’s Father’s Day special, here I was again with my illness reminding me that this was not something that would be possible for me.

            30 years old is young - it means I have a lifetime ahead of me that I still have yet to experience.  I completely broke down that morning, terrified for the years ahead.  I have so much life left to live and I simply do not know how to enjoy my future years with the health conditions that I have.  I live in pain every single day.  There is not one day I wake up without it.  Since January, I have had a total of 9 days where I was operating without some type of pain.  It ranges from mild to severe/debilitating - and who knows when a flare-up will occur.  It is scary to realize that I have so many years left to live with this crippling pain every day of my life.  It makes it difficult for me to be a wife, a mother, a friend, a person.  It’s hard to enjoy even the simplest of activities when inside your body is screaming at you.  

            On Father’s Day, on Ben’s day, I broke down to him, trying to reconcile this person and condition that I have with who I want to be.  He gifted me with an IC cookbook and airpods that I’d been wanting just to cheer me up.  He’s become a pro now at shopping in the grocery store for ingredients that work for me and are specific to the IC diet.  He knows what I must avoid and what special items I am able to eat.  He has made me homemade jelly, since I can’t tolerate any jam and even made me IC-safe ranch (lord knows I’ve been missing those condiments).

            My first act on my 30th birthday was a trip to the urologist to get my bladder injection which was absolutely needed.  My nurse (who I’ve seen twice a week since April) cheerily asked me how my birthday weekend went and how I was feeling today.  I immediately burst into tears, once again trying to figure out how I can live with this every day for the rest of my life.  God bless her soul, she really is an angel (pumping your bladder full of meds twice a week can make you get to know a person) and listened to me.  I’m sure she didn’t expect the response I gave her, but she was entirely empathetic and wanted me to see my urologist sooner to see if there was anything else at all we could do to help.

            There is a procedure called a hydrodistention that’s a possibility, but it’s something I don’t want.  It’s an actual surgery on my bladder that may not guarantee relief, and even if it does, the range of relief can go from a couple of weeks to a few months, and then you have to repeat the process again.  Needless to say, I have PTSD from my ablation and don’t want to undergo any unnecessary surgery unless I have a guarantee of relief that will last.  I’ve researched the procedures and have seen so many horror stories online of patients like me who underwent this surgery and wound up being in more pain than before.  This frightens me and it’s not something I want to risk.

            On the plus side, my gastroparesis is currently in remission.  I go through these remission phases every now and then and when I do, I am grateful.  I’m still eating small meals as not to aggravate anything and there are times where I skip meals because I’m still full from the previous one, but so far, my stomach has been operating at the ideal level for me.  I know that I need to have the GPOEM surgery before the year’s end to treat it, but I am still so terrified to do anything at this point.  I finally took the step last week to speak with the surgeon who performs the surgery to begin the process of scheduling this procedure.

            I am beyond blessed to have a phenomenal primary care doctor that truly has my best interests at heart and has assisted me in managing my pain, mental health and various other conditions.  I could not explain the depth of gratitude I have for this doctor and his practice.  I am also incredibly thankful for the urology group I’m with that continues to put up with me week after week, trying to treat me the best way possible.

While Instagram and Facebook can paint a pretty picture of how things appear, I hide all the days that I’m really struggling.  No one wants to see all the dark parts and I respect that.  I appreciate the good days, where my pain is mild and I am able to be the mom and wife that I want to be.  I appreciate my support system that continues to keep me going on even the worst days and respects that some activities and basic day-to-day responsibilities are a bit more difficult for me.  I could not do anything without the ones I love supporting me and I love you all so much. 

Here’s to 30 years young and hoping that the future brings health. For now, here I am alive.

*currently listening to "Here I Am Alive" by Yellowcard