Wednesday, October 21, 2020

Something I've Been Waiting On

 


               I feel like it was just yesterday that I was writing an updating on my stomach surgery.  I’m reflecting now and realizing that it’s been over two months since the procedure and I have had yet another procedure (let’s add notch #5 to the operation belt of 2020) to experiment to see if it would help relieve the pain that I experience on a daily basis.

               This blog is going to be one of realization, acceptance, despair and hope all rolled into one. The last couple of weeks have been a bit of a rollercoaster. Let me say that social media and what I share with everyone does not show it all – you never know what’s going on with someone.  Be sure to check in on your friends.  I have had some damn good days, but by God, let me tell you, I have had my lows.

               Bottom line – I am going to hurt every day. How bad? I do not know. Will I be able to function? It’s up for debate.  I am going to put on the bravest face I can though.

               Last Tuesday night I had absolute breaking point. I went to bed at my typical old-lady 9PM in pain but hoping I’d sleep it off. I woke up at midnight in the middle of nightmare that turned real. My tears were a reality and I waddled out to the recliner to take my typical stance in the recliner and resume the heating pad position (I should note – my legs are permanently scarred from heating pad burns at this point).  Things continued to get worse, but I told myself I’d get through it, but I never drifted back off to sleep.  For one of the first times in the semester, I had to cancel a remote advising appointment – my god, what a failure I am if I can’t even put on a brave face over zoom?! I contacted my students around 4:30AM and said I’d re-schedule them as soon as I could mentally construct an e-mail with how I felt.  Tried to talk myself down and realized it wasn’t going away.

               Thanks to having, quite possibly, the greatest urology nurse of all-time, I contacted her at 7AM and informed her that I needed to be seen as soon as possible.  She got me in for my typical instillation a day early and set me up with the nurse practitioner due to some other issues.

               I will say this – my entire life surgery has been a promise and a cure to everything but it has never delivered. My ostomy bag has greatly improved my quality of life and it along with the colectomy is the one surgery I do not regret – but I have not experienced a cure and false promises are something I’m over. 

               I could hardly walk, think or see due to my pain level. Because of my ostomy and pain tolerance, pain meds and management are difficult, so basically, I’m SOL.  I went into my meeting with the nurse practitioner a mess.  Did she have any good news to deliver me?  No.  But Lord, was it something it appreciated.

               I’ll backtrack here for a moment and say – ever since 2020 started I have had a horrible relationship with God.  I have been angry, disgusted, confused and just overall exhausted.  Why me, why this?  I’ve mentioned it before, but I stopped talking to him for a long time.  Only recently have I attempted to pray again and it’s difficult.  Unless you’re someone with a chronic, debilitating illness, or someone who has found themselves in the worst of circumstances, it’s hard to understand a loving God putting you in the worst of mental, physical, emotional circumstances that makes you feel your lowest of absolute low.  I have been slowly trying to repair that relationship, but it isn’t easy, and it’s a process.

               Back to my meeting – the NP was an angel.  I was a mess.  I recapped everything I was going for.  What did she tell me?  There’s not much we can do for you that we haven’t already tried.  There is no cure for IC – you’re doing every single thing right.  With your gastro issues, pain meds are going to be difficult to totally manage it all. There’s not nearly enough research in the field. I wish there was more, but there’s not. We cannot provide a cure for you.  I expressed my spiritual issues in a fit of despair and she spoke with me about not being able to understand why God does these things to people.  Did she fill me with false promises? Did she suggest another surgery or treatment to say this “maybe” would work?  No.  She said – this REALLY sucks, it’s one of the worst, most painful conditions she’s ever seen and it doesn’t get better. Did it suck to hear? Yes. But damn – THANK you. Thank you for the honesty. I’m sick of false promises, just tell me straight up.  My mentality will be all the better for it.

               I won’t dwell on what’s been going on with my stomach – honestly, that’s enough – but it isn’t good.

               In the midst of political turmoil, I spoke in depth with my husband about issues one night.  I got emotional about my health issues and my frustration with God about everything that has happened but my reminded me, as he always does, to focus on the positive side. 

               2020 has been my absolute worst year.  However, in the worst time of my life, and in the middle of a global pandemic, it still allowed him to be home in a time when I needed him the most.  There is no way I could have survived this season without him at home to help care for me, navigate this new diagnosis, the bad days, caring for my son when I can’t, and taking care of me on the days when I can’t care for myself.  As horrible as this time has been, I am so thankful he is here and has been able to help out in so many ways.

               My parents are always here at a drop of a hat.  I can’t name a single surgery (and to be honest, very few ER visits, and I feel like I’m upwards of 50 at this point) that my dad hasn’t driven up for.  My dad is my best friend – if you know me, you know that at this point.  This is not to say my mother isn’t incredible; she is one of the strongest people I have ever met – her job is very demanding and not as flexible, so she is unable to pivot as my father can.  I’ve got an incredible support system who is ready to assist me and my family at the ready.  While I may have a laundry list of conditions and uncertainty, there are those who love me and have been ready to get me through it.

               Lastly, this has been the year that I have truly, truly fallen in love with my job.  I may have fallen in love with Criminal Justice and known a life of law enforcement was for me at a young age, but ultimately, that didn’t end up being the final career path for me.  Advising has been my “final” career, and merging the two together has made me SO incredibly happy.  There are days where I feel awful but I’m able to mask my pain and things going on because I can lose myself for a while with working with my students in a job I truly love.

               I have my low, low moments, but I have had blessings.  I’ll work on thanking the man up top for that and hopefully building that relationship up again. For now, I just keep hanging on for something I’ve been waiting on.


*listening to "Something I've Been Waiting On" by Hardcastle

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