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

Everything is Alright

 

    It's been a while since I've checked in and I feel like I'm in a better mental state to update you all on what's been happening, so here we go..

    On August 6th, after putting my bladder through what might have quite possibly been the worst torture of its poor little interstitial cystitis-ridden clear liquid-diet life, I underwent the G-POEM surgery for gastroparesis.  After being formally diagnosed with this chronic disease for 13 years, I took a chance and had the stomach surgery that would hopefully allow me to eat like a normal person.  To update you all, my stomach and small intestines are paralyzed and it takes my stomach 19 hours to empty (hence my skipping meals, my infant size portions and small-sized body frame; trust me, I know I don't look like I did in high school or have that body-builder frame I once had).  My surgeon told me ahead of time it was a long shot due to the severity of my condition, but it was also promising, as the surgery had a 70% success rate.  I was actually pretty hopeful, all things considered - social media boards and support groups raved about the procedure and I was pumped.

    My parents, as always, came up to support me.  We spent the night in a hotel room together.  They dropped me off at the hospital the morning of and we shed a tearful goodbye as they couldn't come in with me to the pre-op prep due to COVID restrictions. I had a mental breakdown from being alone and the pain my bladder was in.  Thankfully, the surgery went well, however, and I had no problems!  If you know who I am, this is a rare occurrence.  Third surgery in a pandemic down and I was free to go home.

    The recovery process was brutal, so I'll spare you the gory details, but I will go on this rant.  What I will say is this - due to my IC, I have chronic pain and need opioids occasionally to manage it.  The opioid crisis has done nothing but harm chronic pain patients.  Because I have an outstanding prescription for my chronic pain, I have not been able to fill pain medicine prescriptions for my surgeries.  It is awful.  I have had a bad experience with pain medication in the past, which I am sure you are aware of as I have opened up about it.  Thankfully, that allowed me to have no problems with this medication.  However, when I have surgeries now, which, I know I will need to unfortunately undergo for the rest of my life, as I tend to need emergency ones occasionally (current lifetime surgery count: 14), I will struggle to obtain the necessary medication to deal with it because I have a standing prescription. It's unimaginable the pain I had to go through with my bladder surgery and then the GPOEM.  The GPOEM, thankfully, was not as bad, but I can't begin to explain how horrific the bladder surgery was.  This is something that needs to be remedied with our healthcare system and with that I will get off my soapbox.

    I had a follow-up appointment with my Emory doctor, and, unfortunately, my GPOEM surgery failed.  I'm still having to skip the occasional meal, I'm taking my regular nausea medication on the daily and I've spent some unfortunate nights on the bedroom/bathroom floor.  My surgeon was incredibly apologetic and empathetic, saying how incredibly sorry he was it did not work and how he truly wanted something to work for me.  I told him it was fine and I would do it again a thousand times over.  I had read nothing but amazing things for gastroparesis patients with this surgery and I 100% had to give it a shot.  I would encourage any gastroparesis patient to have this surgery. His next suggestion was a gastric pacemaker operation.  This is essentially where he would install a pacemaker into my stomach, similar to a heart pacemaker, that would remind my stomach to pump and empty; it's something to consider, but not what I want to think about right now.  I've had 4 operations this year, and to be honest, I'm exhausted.  I've been dealing with my stomach issues my entire life, and right now, my main priority is my bladder and trying to cope with its pain.

                                                                   trying to recover with a toddler

    Which brings me to the next issue - another hydrodistention surgery.  My urologist has suggested performing the operation again but injecting steroids into my bladder this time to see if it will help control my pain.  To be honest, I'm willing to give this a shot.  As difficult as the recovery was last time and despite the fact that it didn't help, if the steroids may help relieve it, I'd try it; the problem is, I don't know if I could get through the recovery without any medication to relieve the pain, because last time, I felt like dying.  It's a lot of days to spend in my back bedroom, crying, not seeing my son, wondering when the end will come, feeling less than human, all for a procedure that may or may not work. The payoff could be huge, but it also could be ineffective.  Do I want to sacrifice that time with my family?  This is where that opioid crisis comes in again and I think back to how horrible I feel when I recover from procedures and start doubting my worth as a wife, mother and friend at that time.

    There are a lot of factors to consider and many things on my plate.  On the bright side, I have a great team of doctors on my side. I will say that I've started a new job as an academic advisor in the Criminal Justice studies program and I am loving it.  The students I work with are amazing and the faculty are great.  I have never felt so in my element, being able to talk about past coursework I've taken and my prior experience as a law enforcement officer.  I know what I'm talking about and being able to relate to the students is beyond amazing.  These kids want to enter the Criminal Justice field with truly altruistic intent and it is incredible to witness.  I love waking up to start the work day and it is such a wonderful feeling.

    My baby boy is no longer a baby and while I miss those days where he was so tiny it is so inspiring to watch him grow into himself and see his personality blossom.  He is quite the wild one and I can already tell he will be a social butterfly with absolutely no filter (the latter of which he is going to get from me).  He is a dancing queen and I am raising him on all the right music.  Being a parent is the best blessing of my entire life and every day I cannot believe I get to be this special little kid's mother (although when the tantrums start, sometimes I debate that 😆 - only kidding).  He and my family make every day worth living.

Currently listening to "Everything is Alright" by Motion City Soundtrack

Here's to Hoping

           
           Here I am, writing to you in the middle of flare because I failed to notice "spices" included in the ingredients for a bag of chips (seriously, I usually meticulously check those things), doing a quick check-in before D-Day occurs for me this week.  Before I go into those details, let me backtrack to a few positive events that have occurred since my last post.
            I have been unable to have a real vacation in several years.  Every time we have tried to book one, a family member has passed away or I have landed in the hospital (yes, this has seriously occurred on about 6 occasions).  I also do not have the opportunity to take one either, due to the fact that I never have any leave available, as it is always exhausted for surgeries and hospital stays, and with all of my medical bills, it’s often not fiscally possible either.  Despite the leave and financial situation, my husband and I planned for me to take an unpaid leave trip to Colorado to celebrate our 5 year anniversary in May.  COVID hit, of course, and we were unable to take that trip (we are still planning on doing this, however.  I want to go out west and see what the lack of humidity does for my hair).
            Luckily, my family planned a cabin getaway for the week of the fourth where we could stay secluded (COVID-safe) and just have a change of scenery where we were all together.  This involved me, my husband, Jackson, my two step-sons, Cole and Connor, and my sister and her husband, Jamie.  It was an incredible time.  I have to say, Cole and Connor taught me so much about how to be a mother and I love those boys with all my heart.  It makes me so unbelievably happy to see how my parents have fully embraced them and how they’ve truly become a part of the Burke clan from day 1.  We had a great time all together and I have seen Connor become, quite possibly, the most competitive corn hole player on the planet (look for him on ESPN one day – I see those competitions played repeatedly lately). 
            I had two pain-free days after a particularly rough June. Thursday and Friday were amazing.  We went on a hike and got to enjoy the lake, even including a rock slide (minus Logan and Cole – calling you both out!).  I had so much fun enjoying quality time with my family, staying up late playing games, listening to good music, and laughing so hard I had tears in my eyes.  I brought my own food of course, and while I missed out indulging on the tasty dips, desserts and dinners that everyone else ate, I still had the best time.  I have found I can enjoy my bland food every now and then and excites me when I do.  I just have to dress it up a bit and be VERY careful when I eat greens as it does not balance well with my ostomy and gastroparesis diet.

*pictured spring mix in olive oil and feta with chicken thighs in parsley and basil with "ranch" (aka cottage cheese with basil, dill and parsley (my only approved spices)
            July 4^th, I decided to throw caution to the wind and indulge a bit.  We wanted to play a drinking game (Ring of Fire) with my parents and there was no way I wanted to miss out.  I was already starting to hurt the morning of Saturday because it had been two days since I had my last bladder injection, but there was no way I was missing out on playing Ring of Fire with everyone else.  While it sounds excessive that I need two injections a week, I can always tell when the injections start to wear off on or after day two as the pain quickly begins to return.  By that night, I was already in tears.  I stayed up all night crying and struggled to even pack the next morning because I was hurting too much to move.  Thank God I had an injection scheduled for that Monday morning, because I was unsure how I was going to keep making it.
            I had an appointment scheduled with my urologist Tuesday regarding the insane level of pain I’m having to deal with on a daily basis.  My diet can’t possibly get any cleaner, I’m taking the proper medications, but nothing seems to make it improve.  Her next suggestion was the hydrodistention surgery, which is something I have consistently said I don’t want.  However, I have finally caved.  I am having it this Friday, July 17^th.  She advised it could send me into worse pain, it could cause relief; it could help for 2 days, it could help for 2 months, it could not help at all, or it could make things worse.  It’s a huge gamble.  For those it helps, she repeats the surgery every few months and injects steroids into the bladder to try to treat it.  She wanted me to switch up some medication and to continue to speak with my primary care physician regarding those.  Again, I can’t tell you enough how much I adore my primary care physician and his entire team – they are truly the best and I am SO grateful I have him as my physician.
            The same day, I had a virtual appointment with my Emory doctor regarding the GPOEM surgery to treat my gastroparesis.  This surgery is done endoscopically, so I won’t need to be cut open (finally!).  It is done on a Thursday, involves an overnight hospital stay and I’ll be right back to work on Monday.  There is a high success rate of this in regards to gastroparesis patients, so I am very optimistic about this procedure.  I will be having it on August 6^th (perfect timing in regards to my job).  I’m not nervous about this at all, actually.  I’m very optimistic; it’s just odd that I haven’t had time to think about my GP while having to deal with the bladder issues.  The bladder problems have taken a front seat due to the pain and I’ve just been managing the GP with medication and eating small meals/less frequently.
            So, I ask for your prayers on Friday as I go through the hydrodistention.  At the very least, I hope it does not make things worse.  I’m looking for anything to help at this point, but terrified for a procedure to set me back any further. 
            I have gotten a little better at talking to God, but still not talking to him about myself.  I just can’t get there.  Oddly, my grandmother dying helped me begin to talk to him again.  Her faith was so strong, and you would think that her dying would make me angrier, but it gave me reason to reach out to him again.  Just not quite there in asking for his help for me from myself.
            In the meantime, I’m thankful for every good day and the loved ones in my life.

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

Frail State of Mind

I’ve debated returning to blogging for quite some time now.  It helps me process things and therefore, here I am again.  I refrained from posting anything during my pregnancy because, let’s be honest, no one wanted to hear about that nightmare - but I think we can all agree that the most darling little baby boy was worth every single hospital second.  Shockingly, despite the medical turmoil that has been my 29 years, pandemic aside, 2020 has been my toughest year to date (yes, this includes the 2017 three-month hospital hotel ostomy chronicles).  If I had to describe it through a song, it would undoubtedly be the 1975’s “Frail State of Mind” (now go give it a listen, proceeded by every other piece of lyrical genius they’ve produced).  Now that we’re rounding out April I feel that I’ve finally had the time to mentally digest, understand and actually talk about what has been the horror of the past 4 months.

I’ll start by saying this begins with “female” issues, so guys, if you’re here and this makes you uncomfortable, drop the scroll.  Everyone is familiar with my gastrointestinal anthology, but luckily I was blessed to have no issues with the gynecological arena.  Prior to having Jackson, I didn’t have a period for 5 years (no complaints out of me here).  Due to my multiple surgeries and health issues, it was just assumed that everything was whacked out there as well and to consider myself thankful that I didn’t have a monthly visitor.  After I had Jackson, however, I never really stopped bleeding.  My periods lasted between 15-30 days every 2 weeks and were incredibly painful.  After several months with no way to regulate it, there was only one way to remedy this - an endometrial ablation.  A simple, fast, outpatient procedure.  Burn the lining of the uterus, your periods go away, you can go back to work 2 days later.  No one has any problems, right?

I can say with 100% confidence that this procedure was by far the worst thing (medically) that has ever happened to me.

4 days after the procedure, I developed a strong, debilitating pelvic pain that continued to get worse.  My OB did an ultrasound and thought everything appeared fine.  Two weeks later, I was in the ER as a result of the pain.  I was quickly dismissed after a CT scan that the technician said was “unremarkable.”  I was unable to work, unable to take care of my son, completely incapable of functioning as a normal human being and spiraling into depression, going back on antidepressants for the first time in over a year.  Three weeks later, I was back in my OB’s office, begging for an answer - something was clearly wrong and I just wanted it fixed.  She referred me to a high-risk OBGYN who reviewed my CT scan once more and said the problem was my uterus and it had to go; finally, someone was listening.

I finally saw a light at the end of the tunnel, despite how badly I was hurting.  A week later, things would come shattering down, as I experienced a bowel obstruction.  Let me state for the record that a bowel obstruction is one of the single most painful events that anyone can experience (and I feel like I’ve been through it all at this point).  Off to the hospital again, I was admitted, put on an NG tube (and complimented by the nurse who said she had never had a patient take an NG tube as well as I had - you just get used to those horrible things and are ready for relief), put into a drug induced coma for the next few days while trying to balance my pelvic and intestinal pain.  Watching each new doctor come in and visit me with that shocked “Wow, you’re only 29 with this medical history?” face and statement come in until I was better. 

For the first time in my life, I stopped talking to God.  I was angry.  I was done.  I had (and frankly, still have) no clue why I had been chosen to undergo such astronomical pain so many times in my life and still be expected to function.  I don’t mean to wallow in self-pity here, but I’ve been through a lot - and I was sick of it.  I quit praying, I stopped asking people to pray for me and I said I was done talking to the man upstairs - this was it, I’d had it.  I was at the lowest point I had ever been in my life, feeling like a complete failure as a mother, wife and overall human being.  The hardest part was mentally grasping that I could not physically be a parent to my child in my current condition and it could not have possibly made me feel worse.  

Two months after my ablation, I had my hysterectomy.  Sure enough, the surgeon discovered what was (what we thought would be the end) the result of the pain - a fibroid had exploded in my uterus, causing my uterus to rot inside of my body.  Doesn’t that make you feel attractive?  Surgery pain is surgery pain, it’ll be over soon right? 

9 days post op, I woke up feeling amazing, as if I didn’t even have surgery.  By that afternoon, however, my pelvic pain had returned.  The next day, I was bedridden again.  Down I went, in one of the lowest points in my life.  My father (always the man, my best friend) came up to help out with me as my husband was taking care of our son and balancing working from home.  After another CT scan that did not show anything apparently wrong, my surgeon was stumped and said I would have to wait it out.  I couldn’t do that - this did not make sense.  I was crying non-stop from the pain and could barely walk.  Looking at a diagram of the body, I *quite literally*  just saw where the bladder was located and asked if that could potentially be the problem.  My surgeon said it was worth a shot and to follow up with a urologist that I failed to follow-up with before.

Shout-out to Athens Area Urology for getting me in for a cystoscopy (camera shot up your bladder) next-day and a consultation.  After this appointment, I received some good/bad news.

The good: I finally learned what was causing this all encompassing, debilitating pain.

The bad: I have interstitial cystitis.

Out of all of my conditions and health problems, I have to say this is my least favorite one.  It appears the ablation also permanently damaged my bladder and I, yet again, have another chronic condition to add to the list. The amount of pain this causes is astronomical - when you go through a flare, you cannot function.  I was so grateful to have an answer, but mentally did not know how to cope with the news.  I have to thank my husband, my parents and my sister for, quite literally, saving my life after finding this out.

I’m now on an army of new medicines and on an incredibly restrictive diet to help control flares.  I thought my diet was limited before, but just take a google at IC diet - think you can have anything remotely flavorful?  WRONG.  I’ve had to give up coffee and wine, and if you know me, my bloodstream is 50% Starbucks and 50% Pinot Grigio, so this has been the biggest struggle.  I will be getting bladder injections 1-2x weekly for the rest of my life to help treat the pain and control flares, and let me tell you - a bladder injection is truly just as glamorous as it sounds.  I’m on new mental health meds to help my brain cope with this news, because it’s been tough and I’ve struggled like I’ve never struggled before.

My biggest concern in all of this has been - what kind of mother will I be?  What kind of mother will all of this make me?  Sometimes too much movement triggers even worse pain.  Will I be the mom that can throw a basketball with her son, or will I have to sit on the sidelines, or worse, stay home and miss sporting events, school functions and the like because I’m too sick.  How many more hospitalizations and surgeries do I have in my future?  I’ve recently been approved for a new surgery to treat my gastroparesis - it’s supposed to be routine, but needless to say, I’ve developed a bit of PTSD from “routine” procedures.   How much of Jackson’s life will I miss because of my health?

Despite everything, despite the lowest of my low, I know I have a sweet, precious little boy that I have to live for.  I cannot imagine missing a single second of his life or being there for him in whatever capacity I’m able to be there.  I have never experienced the type of love that has come from my love for him, and whatever happens to me, I have to continue to fight for him.  Mentally - this takes a lot of work.  It takes a lot of support from those that care the most about me and who have been here for me through the worst of it (I’m not good when I’m bad) and some strength on my part as well.  

As for the God part, I’m working on it.  I’ve started praying for others, because the world is a scary place full of people I care about.  I hope that it’s all working.   As for myself, I haven’t said a prayer yet - maybe we’ll get there one day, but I’m still mending that relationship.  

For now, I’m grateful that I’m healing this frail state of mind.

Top 5 Ostomy Fails

I officially became an Ostomate on February 28, 2017.  Look at this happiness.  This girl who clearly knows everything about her ileostomy and how to control it.  She looks flawless:

Clearly all days are glorious.  They are obviously full of sunshine and rainbows and without a doubt I can stealthily sport Debbie underneath my clothing without anyone batting an eye.  Because I'm a pro.  I got this.  I can work this bag.  I can do it all. '

WRONG.  Most days are spent like this. With the "oh shite, I think I screwed up" face:

In the interest of transparency, I would like to list my top 5 ostomy bag fails since Deborah and I have come to know each other.  I would like to warn you, this post is not for the faint of heart.  If you have issues with a certain "#2," I suggest you scroll up, select the "back" button, and return to whatever previous activity you were involved with before you happened to stumble upon my stool-centered blog.

#5 - The First Leak

They say when you return home all of you ostomy knowledge goes out the window and your first bag change will be a debacle.   Well, let me tell you - it was a fiasco.  As my husband and I were relaxing watching our 478th episode of Shark Tank, I felt a wetness underneath my shirt.  As I checked, I knew - MY FIRST LEAK!  Panic ensued.  We ran to the bathroom.  Puppy pads were thrown to the floor.  I stripped down to nothing, I ripped off my bag.  We grabbed a trash bag and I stood next to it and my stoma went nuts as I went "#2" on the puppy pads like my little Chiweenie, Scooby, would.  Our bag changing knowledge was quickly forgotten due to the crisis at hand, but thanks to a quick phone call to a good friend, we were able to successfully re-bag myself.  However, we were unable erase the images in our minds of my stoma and me pooping on the puppy pads like my little Scooby.

#4 - BAG DOWN

It had been a particular rough day in the hospital where seemingly everything, and I mean everything, had gone wrong.   My nurse and I were joking about the catastrophes and she stated "at least things can't get any worse."  As I walked toward the bathroom I agreed with her and said, "yes, that's true - they definitely can't get any worse."  The second I finished my sentence, the clip on my bag came loose, and the contents of my bag spilled on the entire floor, covering myself in literal shit.

Things definitely got worse.

#3 - THE LEAK TO END ALL LEAKS

I was waiting to have another test run at the hospital as transport arrived to pick me up.  I arose from my hospital bed to find that yes, I had another leak. Unfortunately, the hospital was short on bags my size, so it was the third leak of the day.  Paste was hardened to my area, so I had to be put in the shower immediately to be washed off and have the paste picked off immediately.  

The hospital was short staffed, so it left me with no other option but to have my nurse and my dad take the paste off with tweezers while I was in the shower.  As if I wasn't humiliated enough, I had to be in my birthday suit in front of my father for the first time since I was a toddler. I stood there, naked, helpless, and downright ashamed as they picked away at my paste and I prayed for the night to end.

A correct size bag was eventually put on.  My dignity was never found.

#2 - THE INTESTINE CRISIS OF 2017

When you're in the hospital, they want you to measure your output.  I felt my bag get quite full with what felt to be a large "turd" inside.  I asked my dad to hold the can for me to empty my bag.  We did, but the large "turd" didn't budge.  We poked, yanked, tried to "break up" the object, but it wouldn't move a bit.  We decided to call a nurse.  The nurse had me lay back and put a towel around me as she didn't want to make a mess.  I thought it was a bit odd, but I went with it.  

She pulled my bag off and what I saw made me want to pass out.

"Your intestines have decided to come out," stated the nurse calmly, "I better call the doctor."

W.T.F. Full on panic attack.  I hyperventilated. I cried. I screamed. I squeezed by dad's hand. I almost broke it. I lost my mind.

MY INTESTINES ARE COMING THROUGH MY STOMA??!?! WHO DOES THIS HAPPEN TO?!?!  

My dad is calling everyone. I'm crying and crying as he holds my hand saying it's okay.  Then he says it "Looks just like a 'Peter'."  Nice saying it looks like I have a dick coming out of my stomach, Dad.

They give me ativan to calm me down because I continue to lose it.  They eventually bring in the surgical team to push it all back in.  It takes a while, it hurts, but it all makes it.

And yes, I'm still suffering from the disaster.

#1 - THE PANERA INCIDENT

I have saved the best for last.  Ah, the Panera Incident.  After a month in the hospital, it was finally time - I was being released!  I was ecstatic and couldn't wait to leave my jail cell.  I was dying for Panera, so my husband and I decided that is where we would eat upon leaving the prison.  When we got to Panera, I realized that my bag was completely full.  I gave my husband my cell phone and wallet and told him I would be right back as I needed to empty my back quickly before we ate.  I went into a small bathroom stall instead of the large stall, which was my first mistake.  I should have known I condemned myself at that very moment.  I unclipped my bag, started to unroll the front, began to move it toward the toilet for emptying when my hands got loose in the small stall and slipped.  

As my hands slipped.. the contents of the bag started to slip as well.. they quickly exited the bag... not into the toilet but...

...all into the inside of my pants.

Yes, my entire ostomy bag, full to the brim, softened stool, emptied into my pants.

You could say I shit my pants.

Since I had no phone as I had given it to my husband, I was SOL.

I began scooping everything out as best I could.  This process took quite a while.

Finally, as I felt I had enough out of my pants to get my husband, I did.  He was able to get me a change of clothes from the car until could get home.

Broke that ostomy bag in real quick.




On that note, I'll close out this blog post.  Peace, love and blessings.