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I hope this helps someone out there

Posted on August 2, 2019 by Georgia's Pampering

At the start of the week I had a very frightening incident. L had to go to work and after seeing him off, I grabbed a bite of food to nibble on to keep my meds from making my stomach upset. I could still see the reflection of the headlights through the driveway facing window as he waited at the end of the drive to pull out. That’s when things went wrong. I’m not sure if the food just turned wrong as I swallowed or if my throat pulled one of its lovely episodes of making it difficult to swallow, but I ended up choking. Thankfully, as I prepared to try to use a chair to do the Heimlich the food mushed enough and my throat relaxed enough, so I was able to swallow. It left my throat so raw and sore that today was the first day I spoke fully, although I was careful to not speak a lot. I even got to eat real food again! *happy dance* I still have the side effects of it inflaming other parts of my sinuses and my ear canals, but Hallelujah!

Anyway, while quiet, L gone or asleep most of the time, and my trying to distract myself, I went down the medical rabbit hole. I started out with learning how my throat could cause my ears to have a crinkling noise and all my other symptoms, then about six subjects in I ended up with a YouTube recommendation to watch Spaulding Decon, under the Crime Scene Cleaning website. (Hey, I admitted I went down that rabbit hole. Never know where I’ll end up with my curious mind! Lol) One of this year’s videos, where they started to record and air lengthier and informative episodes about biohazard cases that they handle, came up and I ended up watching them all, and I suddenly had a whole new POV that helps me with my suicidal ideation. They clean up from regular unattended deaths, hoarding, accidents, etc., but also suicides. There is no judgement over the person’s choice or what the client has chosen for the level of cleanup once the biohazards have been dealt with, either. The thing is, it’s unflinchingly up front and shows everything after the body has been removed. You see what the family member that discovers the body would face and how the family isn’t just coping with their grief and possibly shock, but also the physical scene that is left behind.

Police and emergency personnel don’t clean up the scene when they remove a body. They’re there for the emergency (or removal) situation and possibly an investigation. They don’t clean the blood splatter from a gunshot wound or remove decomp. There are specialized companies that do this; not only for safety, but to help the people and families in need of their cleaning services. They’re heroes who don’t wear capes, just like law enforcement and emergency personnel.

Seeing the gore that a grieving family member or friend, most likely L or my mother, would see and deal with if I committed suicide, really helped me create a step back, so to speak, for my mind to walk through if my thoughts turn dark. I basically do a mental crime scene walkthrough, to see it as they would, and see how the different choices would affect them. Somehow having the intense, graphic visuals in my mind are a great way to make my mind shift focus a bit and end up completely stopping. (Ask people with ideation – it’s super hard to quiet those thoughts and take a step back from the thoughts, no matter how much you don’t want to have them or feel that way. I certainly don’t want the sudden feelings of desolation and worthlessness!)

If you suffer from ideation or know someone that does, please consider this unconventional method or talk to your mental health professionals if you are the sufferer. As my awesome psychiatrist says, you can’t have too many tools in your belt when it comes to mental health. The visuals and the meaning behind them are honestly very haunting. They’re a hell of a lot stronger right now for me than when the dark thoughts creep in. So, I hope (yet another brutally honest and odd post) will help either open dialogue if you know someone who is struggling or if you suffer and want to try another method to see if this is the one that works better for you than the ones that have barely worked for you before.

If you know someone who has troubles with ideation, please consider trying to stomach a bit of the show enough to watch “Crime scene cleanup job questions answered”. The owner has some incredible statements about judgement that are worth a listen and to take at least a few minutes to consider. It might just give you another way to look at situations.

I truly hope that any sufferer receives the same empathy and lack of judgement that this company gives, and I hope that you are able to find that one tool that works really well for you, even if it takes going down a weird YT rabbit hole to find yours.

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The Clock

Posted on July 22, 2019 by Georgia's Pampering

I’ve avoided writing for a bit, because I haven’t been in the best mental space. I try and sometimes I manage to fake it pretty well, but I made a promise to myself when my friend suggested I start blogging. I’ll always be honest, vulnerable, and tell all about those messy moments, regardless if it’s when I’m ruining a batch of soap or writing about life. So I avoided writing and hid away within myself, and hid away from my own fear as much as I could. I don’t want to take a pill to make me stop feeling this right now and to stop myself from writing. And I don’t want to hide right now.

Two Fibro sufferers (that I know of) stopped their fight. They couldn’t take this invisible disease robbing them of just one more thing, take the pain that nearly drives you insane sometimes, or take another medication that will hopefully make some invisible disease that is barely understood a little bit better. Or maybe they couldn’t stand the thought of being even more of a burden on someone they love – needing help to even wash their hair when there are only five spoons for the whole day, needing someone to make something for them to eat that their body might tolerate, and then needing that person to be their waiter and housekeeper. Maybe they couldn’t handle their messed up minds sending wrong signals and whispering horrible ideas, until one horrible idea isn’t so horrible. For whatever reason, they found their own version of dignity in death.

Another invisible disease sufferer, who has a laundry list of conditions like most of us do, is really struggling. He started out a lot healthier and stronger than I did when it hit, it has made life much harder for him than for me, and he’s younger than me. We exchange comments online sometimes, so we’re not close friends, but there’s a deep connection to other sufferers that is so different than a friend or acquaintance, that there is a strong empathy and sympathy.

I’m weeks away from turning forty and two connections are gone, while one struggles even harder, and all three are or were younger. It’s honestly messed with my mind and feelings a bit. I suddenly exchanged the biological clock of motherhood for the very loud clock of mortality. And trust me, I know how melodramatic that sounds, and even how morbid it seems, but I’m being honest. When my big relapse started, I truly thought that as long as I was careful while sick, I’d be mostly in remission by forty. I’d miss those milestones most people hit during their thirties and just delay them closer to my forties instead. That very loud ticking in the back of my mind has made me realize that those possibilities are pretty much beyond my reach now. And I’m trying to learn to be okay with that.

My jacked up mind gave me suicidal ideation most of my life (welcome to another symptom that they’re just starting to associate with us realizing there’s something wrong with our bodies before the doctors do). With the adoption journey, the breakdown, and all the work on my PTSD, I finally broke free of most of that and want to live as much as I can. I then realized that I’ve been living for remission while being afraid of the normal aspects of life, because they might make me sicker, and that would ruin my chances of remission by forty. And I wonder if those women who committed suicide gave up when they realized that they were afraid of getting sicker, too.

I wonder what “dignity in death” is to me.

I want to live. I want to live MY life, with my husband, family, and friends. I want to make and capture as many memories as I can before that clock consumes me. For a while now I’ve felt like I was so lucky to have such an eccentric and diverse life between the first onset as a child into my late twenties. I lived and experienced more than a lot of people do in their whole lives, and I’m so thankful for that.

I’m totally glad for those people that feel like their career completes them; happily, yet still a little jealous I admit, for those people who celebrate all of those beautiful moments their children experience as they grow up; and find it beautiful when a couple has weathered all life threw at them and now shuffle hand in hand down the sidewalk in the park, to their favorite bench, where they feed the birds every day that they feel well enough.

Probably deep down most of us want at least a taste of all of that. And we all mourn when terminally ill teenagers fall in love, knowing that they can’t even allow themselves to dream of wanting even a little bit of any of those lives. How many shed a tear for people who just can’t fight their hardships anymore? When did we start to judge them for not trying harder, when it’s really not so different than those terminally ill teenagers, in the end? Those people tried to live, but they were robbed of a lot of their lives and dreams, too. Some people never get to grow up, some never get to experience the easier lifestyle of first-world living, and some slowly lose every bit of themselves that they took pride in or used to do that brought them so much joy. And it sounds horrible to anyone that isn’t suffering or having to be a caregiver, but sufferers are sometimes jealous of dementia. Sometimes we long to forget what it was like to be independent, to truly live in the moment without worrying about how it’ll affect the next week, or to stop hearing the tick of that clock once it starts. It seems selfish and morbid, but there’s the glaring truth, making me want to hide from being someone who could seem so horrible, especially after working for a neurologist and watching family members succumb to the illness. I have a hard time facing that every day brings at least 15 pills into my body and brings me closer to the likelihood that I’ll be hooked up to tubes to administer my meds, not to mention to feed me, since it’s getting hard to eat, and that the bed we hoped would be Kiddo’s will probably be given away some day to make room for the rolling hospital bed that I may have to live in at some point. All while that damn clock ticks without any alarms to warn us of how much longer we have before the next step in the battle starts.

So I put a swirling pearls design scrapbook sticker around the shaft of my cane. I got an Echo Show for myself and my nieces, so I can truly see and hear them grow up until I’m too sick to want them to see me this way, started planning happy moments that I can experience with my husband while I can, and made myself be brave enough to write this. It’s one of the few times that I’m brave enough to try to explain, to leave my thoughts and feelings of my experience for those I love, and maybe even dare to hope it helps someone else in some small way.

I don’t know when that clock will tick too loud for me or where the line in the sand is for me to find my dignity in death. And I can’t say if dying naturally with all sorts of bodily failure, with my husband as my caregiver, will be my version of dignity. Or if my dignity will be a quiet moment wrapped in towels and one of his flannels, so I can envelope myself in his scent one last time, with a bottle of pills and a last conversation with God, trying to keep from being any more of a burden. It’s the one thing my illness can’t decide for me and one thing that I don’t give a fig about being judged by others about. It’s the one thing that is 100% mine. And while I can, I’ll muffle the ticking of that clock and try to live. I owe it to the part of me that keeps fighting this illness, and I owe it to every moment I get to steal despite all that has been stolen from me, and want to honor those extra moments for those that couldn’t fight anymore.

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A Scary Time

Posted on December 4, 2016 by Georgia's Pampering

I’ve debated about writing this post for probably close to two weeks now.  It’s quite simply been a scary time for me and I didn’t know if I wanted to put that vulnerability out there, but as I was saying my daily prayer, which includes a prayer to expand my opportunities and benefit to others, and it dawned on me that this post might help someone out there who is looking up these tags.  Therefore, I’m laying it all out.

 

I have a new doctor that is systematically trying to go through each medication and condition that I have, and trying to find out if I have other underlying conditions that are being masked by these medications or have gone undiagnosed.  After a 20+ year history of taking antacids and preventatives for reflux, which finally got diagnosed as GERD about 5 years ago, she decided to change my preventative, which no other doctor has done since I was diagnosed with an Esophageal Ulcer in my teens (without a GI consult, mind you).  I have just taken whatever works until it doesn’t and then switch, and my long list of doctors couldn’t have cared less as long as I kept them informed as to which medication was currently keeping the reflux, vomiting, and nausea at a liveable level.  She also took me off of my Marinol (synthetic THC), which brought back a fair portion of the nausea and vomiting.  The reflux medication she prescribed didn’t work, just like I told her it wouldn’t, sit I’d tried it 15 years ago, so she changed it to a prescription strength of one that usually works for me and then said there was something else going on that needs to be investigated to be causing this.  Keep in mind she believes in Fibro, treats it, and everything, so she knows it can happen it Fibro, but doesn’t believe it should be so uncontrolled that I need Marinol to keep my symptoms at bay.  She has scheduled me for an endoscopy of the esophagus and stomach.  “We need to figure out what is going on.”  So me being the nerd that I am, especially with the medical background, started researching EGD (the procedure) and then found a lot of articles from reputable sites (as in, the ones that the neuro office used when I worked there) about the causes of symptoms that lead to this procedure.  It turns out I have a lot of risk factors on board and a lot of my unexplained symptoms that the other doctors never paid attention to when I mentioned them were all red flags saying I needed this scope.  Long story short, due to all of my medical history and complications, I have around an 80% chance of having stomach cancer that has gone undiagnosed for at least a little while, if not quite some time.  It could actually explain why my Fibro has progressed so intensely while I was still young and why it is so debilitating now.  It could explain this continual cycle I’m in right now of getting really sick, then seeming to recover, and then starting back over.

 

I don’t react to things like a normal person, I’m the first person to admit that.  There was a reason that I was awesome as a Risk Analyst for HIPAA at the office.  I am that worst scenario kind of girl that usually has pretty bad luck, so I tend to prepare for the worst.  It prevents me from shattering in front of others when I don’t want to (what can I say, I’m an introvert, so I’d rather keep that to myself or apparently share it in writing for the world to see *small laugh*).  Also, if things turn out to be just a little bad, then it’s a big relief and things will be a lot easier to handle.  I HATE being unprepared for anything, but most especially my health, since there are so many parts that, excuse the wording, makes life kind of shitty sometimes, most especially if it’s a new diagnosis that I was blind sided by.  So I’m looking at that 80% chance right now and going off of that.  I did a cross research of survivability of stomach cancer with all of my health issues, which didn’t come up exactly, but came up with enough that left me without a lot of hope honestly.  And before you say it I know there’s at least a 20% chance that it’s something small and fixable, I KNOW, but I’m that other kind of person that prepares for the 80% with 100% failure later.  I’ve kind of distanced myself from it and am just analytical about most of it.  I have a to do list of things that must be done in case I die and I’m working on it.  Some think it’s morbid and it’s hard for others to even imagine doing such a thing, but I’ve had 2 friends die from health issues all ready that were younger than me and let’s face it, my health pretty much sucks.  I don’t try to seem morbid; I’m literally just focused on what I need to do, how to handle things, and it’s my way of coping.  It’s the only thing I’m actually in control of now, if you really think about it.  So I’m working on getting my car title changed to my married name so that my husband won’t have to fight probate for it, I’m working on an instruction manual for the household appliances and cleaning that he has never done, and I’m working on making these the best holidays ever.

 

I want togetherness and happiness, just in case this is my last one.  Hang every ornament while remembering how it came into our family.  Have a deliberate reason behind each gift instead of it just being about commercialism.  Our Christmas tree stays lit almost around the clock because of my love of Christmas lights and we even got a strobe of snowflakes that should be outside, but he kept it inside so I can sit and watch those lights too, and try not to miss too many chances to bask in the comfort of those lights.  This year it’s all about the love of our tiny family.  By Christmas Day I should have my results, since my test is just under two weeks away, but until then, I’m going to keep coping.  I’m also going to keep cherishing every moment with my family, my loving and insane fur babies, and enjoy every little ounce of Christmas cheer that I can.  Maybe we should always act like it’s our last one, since anything can happen.  I know that as soon as I started treating it as such my heart seemed to overflow, feeling too big for my body or soul.  I count my blessings and stop to see the beauty all around me.  And maybe this is the impact that I can share.  While a little bit of my heart is tearing itself apart over the thought of losing those I love, my little life, and the moments I might miss, the rest stays focused and works on my end of life goals because of the love in my life.  I want to protect them if I’m unable to handle these things later.  I love them too much to leave it unresolved and in their lap.  So if you’re going through a really tough time too, focus on the love and let it guide you.  And cope however you need to no matter what anyone else says!  You do YOU and just try to get through this however you can.  And if you feel alone, just reach out.  It can be a relative, a counselor, or even to me.  For me, though, I’m going to do my to do list and then make sure everything is easy peasy for Christmas Day so we can just spend time together and have our grinchy hearts grow two sizes too big from all of the love.  🙂

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