Searching for the Light..

 

So, you want to write a book instead of a blog - what is that going to be like?

First, I realize that I'm not a writer.  Blurb posts are far easier than a cohesive body of work.

Second, I realize there is a lot of trauma I've experienced and haven't dealt with.

Third, this is turning out to be so much different that I expected.

I initially thought, let's just talk about being sick - this will help those experiencing the effects of being chronically ill and disabled.

Which led to - whoa, I can't forget about mental illness here; and we all know I'm open about self-harm and how that's important to address.

..there are also a lot of important people and events that have shaped me into who I am today, whether or not they're a part of my life anymore.

I have also held a lot of different lives.  Blessed day, look at the physical transformations I have undergone.  Let's not forget about the important experience I held working with drug court, addicts and what an important role that's going to play later on.

..and here we are.

While I feel a bit self-serving with it all and currently sitting at 12,685 words of my own life that is probably going to take a further 16 and a half months of perfecting (at a minimum), it's interesting.  Some of the most difficult parts for me heading into the future is choosing which traumas to address and which ones do I decide to leave out.  For heavens' sake, I've had nineteen surgeries at this point, no one wants to get into the nitty-gritty of each one.

While I took the advice of "keep the story, change the names," I also have to acknowledge that there are some events that have gone on that are bigger than me.  While I don't mind being as self-depreciating and as open about my life as I can, there are events that happened in 2017 and 2018 beyond what people know that I simply cannot reveal because the picture is must larger than myself.  I will say that the people who held me up during this time know who they are and you are the reason that I am here today - I owe you a debt of gratitude that I will never be able to repay, and thank you for being a friend that I could only wish to aspire to be.  No worries though, I have enough traumatic events to go around.

There are some things I will have to do in-depth research on and conduct family and doctor interviews with because I was incoherent or comatose at the time.  I have medical records to gather and pore over to see what exactly happened, because although I have one of the most ridiculous memories in the world (this is a skill, if you know, you know), I've also been anesthetized for a lot of my life, and while I could quote most of the gastrointestinal system to you, there are still things I don't understand.

Creating my life playlist on spotify has probably been my favorite part of the entire thing, and if nothing comes of this "book," it will have been worth it.  It will also be something that I can pass on and share with those that I love, including my son, if the world never gets to see it.  Just sharing what I had with my parents meant a lot the other day, even though I know it was difficult for both of them to read, as evidenced by my mother's email after finishing.

Despite what I can't share, I will still never be able to play Johnny Cash's "Hurt" and write that 2017 chapter, so I'll be skipping all around and writing the happy times until then.

For an update in the health arena, we've got the good and bad news.  The good news is I'm in somewhat of a remission in both IC & digestive arenas.  It's during these periods that I feel like I do all that I can, in this "euphoric" phase, because I know I'm living on borrowed time until the dark time appears again.  While I'm living with the daily pain, I can manage it for now, so I'm going to take advantage of every single moment.  

My doctor doesn't quite know what to do with the stomach sitting in the pelvis situation to help improve things, and even if a surgery is successful, he can't guarantee that it will improve my situation.  I don't want to explore it right now either.  Mentally, I can't be in a hospital.  I don't want to be hooked up to IV drugs or undergo another operation; I'm exhausted and don't want to be on those medicines.  I was watching Ironman last night and started weeping when I saw him hooked up to the EKG machine and heard the beeping - my mind is truly not in the right place for all of this, the PTSD is just too much.

So fingers crossed that we can avoid the hospital and I can keep enjoying this, dare I say, semi-normal? life for now.

Can I include song titles again? I'm listening to Searching for the Light by VHS Collection, because that's what I'm doing.. 

Frail State of Mind Pt. II

 

    I really don't know where to start with this one.  The perfect time to begin a blog is with fresh, unprocessed trauma, right?! So here we go..
    One thing I have not mentioned recently is that among all of my intestinal trauma my interstitial cystitis was flaring back up.  Every 2-3 months I repeat a surgical procedure called a hydrodistention on my bladder to help abate this pain, but in the meantime I had not shared with anyone outside of my immediate family and closest of closest friends (and even few of them) what was going on here.  You start to feel like a drag after a while and do not want to put your problems on other people - I am working on this in therapy.  I keep a lot quiet and internalize the struggle for fear of exhausting others.
    Last Wednesday, prior to reporting to the hospital for my surgery, I realized how deep my trauma had reached.  I started having a panic attack even thinking about being put under for a procedure I had had before because I simply could not fathom being in a hospital setting again.  For someone like me who has a lifetime commitment to be one of the hospital's premiere residents, this is not healthy.  My dad, the savior that he is, drove up five hours to be there with me while I had the surgery and take care of me after.
    I thought that dealing with the post-op pain from this surgery would be all I'd have to deal with, but let's not forget the abdominal pain I had been experiencing since my last blockage and also not talking about.  I was constantly waking up in the middle of the night, unable to move, unable to eat or function, trying to balance all of this in between operational flares.  Let's forget being able to "mom" or be anything of worth at this point.
    Saturday night I woke up at midnight and could not fully sit up straight. I had gone to bed (on the bedroom floor, my comfort zone) early that day texting my parents "it feels like a blockage" but hoping that this was not true.  I know when something is wrong, and something was wrong.  I crawled up to the bed and woke up my husband and told him the words I hate uttering more than anything: "we need to go to the hospital."  Ben knows when I say this I mean it - there is something not right.  He helped pack up my hospital bag (thank goodness my stepsons were home) and we jetted off to the ER at 2AM.  
    Luckily, since I my last experience there, I've talked with hospital reps and they have somewhat of a "flag" on my account which allows them to listen to me more and has words drawn up of my typical remedy.  I was especially thankful for this as we were quickly whisked back and my husband helped put into words what was going on with me (I should also note that my guts were coming out - did I forget that part?) so that the proper remedy could be delivered.
    My husband has a job where he has to travel and not always be with me.  I'm not going to say this is easy to deal with, because it isn't.  This is where my parents really step in, with my dad having the most flexibility in his job, but my mom is always there every single time she can be.  After my husband left once I was settled to take care of our toddler and get ready to go out of town, I felt comfortable enough alone to be able to speak with the doctors, as my surgeon (the human equivalent to Jesus) would be on the way to meet with me, and there is no one I have more faith in than this individual.
    I was able to detail to him the exact spot in which I was receiving the most pain, as this one portion always flares up.  He immediately thought we needed to operate to repair what was going on here, and thank God for that.  I can't begin to describe what it's like going into surgery.  It doesn't matter how many times you've had it, when you're having a major operation, you start to lose your mind.  I don't care how many drugs they give you, you're scared shitless.  I can remember every detail of being in pre-op and the nurse trying to calm me down and talk me through what's going on.  I'm tearing up writing about it - PTSD and trauma in the chronically ill is a very real thing.  The nurse took my engagement ring for safekeeping, said a few encouraging words and the always "you're too young for all this," and sent me on my way.  Lights out.
    The first thing I remember after waking up was my doctor showing me a picture of my intestines in a total knot and saying "you were completely right, look at this Lindsay," and me losing my absolute mind.  Drugged up, barely coherent, I just kept saying "I wasn't crazy, I wasn't crazy," while he repeated "no, you weren't crazy.  You were right, look what was wrong with you."  You often get dismissed when you have an invisible illness, because it's something you can't describe - but seeing in photo form the turmoil that was going on inside of me that I was trying to cover up was so validating.  No wonder I was in so much pain and nothing was passing through me - my remaining intestine was in a complete knot!  
    Dr. Carr came and saw me a day later and I was feeling horrible from the post-op pain but grateful that the original pain was gone.  I can't tell you how many times I have thanked this man for believing me and fixing me when no one else would (let's not forget he saved my kid's life and operated twice while I was pregnant).  He is completely humble, empathetic and kind, saying "you've always led me right to the problem, it's not an issue at all."  I tell him I would buy him a boat if I could afford it and mean it.
    This will be another trauma I have to file away and hope that nothing else comes about in the meantime.  January/February/March 2021 will be added to another chapter of Feb/Marches (I detest these months) in which I've had to fight my body.  Bless my therapist - she's got a lot of work to sort out this week.
    Thank you to the friends who have remained my confidants and stood by when I can't barely stand myself.  It takes a lot to hold someone like me up, I just hope that I'm worth it when I'm good :)
    Until then, I will be trying to remember that I'm not worthless just because my body is built different.  With a heating pad and not moving, of course.