As I sit here tonight- feeling miserable- yes miserable- a feeling one is allowed to have when one is actually going through life being one had awful news time and again- I have to wonder how I got here.
I thought maybe if I tried very hard and took the correct medication and followed the doctor’s orders just right that nothing else would be handed to me (and us - meaning my John and my Olivia) in a small windowless emergency room that barely had a television or a properly working telephone.
It’s the sort of news that comes to someone in pieces because it’s such weird and unusual health related news. When one gets the news we got, it’s almost as if all other news given to us was pointless.
Like just recently I had a long conversation with someone I used to consider kind and someone I could count on- no matter our differences. After I received the news I got, that conversation seemed - well... pointless and unnecessary and even ridiculous.
We even got a letter recently that said we were so close to paying off a loan - a loan we took out a year and a half ago. That letter we were waiting for? The one that could possibly make or break a score of credit? That letter seemed - all of the sudden - comical and again; pointless....
You see...
It started out so subtly. At first a small, but rather sharp and unexpected pain on my right side.
The next day, a little bit more pain and a lot less subtle. This day, this time, it was if the new pain was saying, “Hey. I’m here. I’m not gonna go away.”
By day three, the pain was starting to interrupt my very short - but very needed- sleep time. Ya see, my small fiber neuropathy already disturbs my sleep. And by day three of this brand new unexpected and uninvited pain guest, I was starting to vocalize my concern.
First to my husband, then to my mom...
And then all of the sudden, the pain just stopped.
You’d think that was it. And that was gonna be the end of all of this...
But, we’re talking about me.
Me.
The only sibling (5 of us) with a multitude of health issues. The only family member whose life has been subjected to a lifetime of disability payments. Payments that I earned, mind you... but I never thought that at my age I would be a shut in with pain that would make me cry.
This past Wednesday, I didn’t sleep. I couldn’t find comfort. Not on our very new and very expensive king size plush mattress. No comfort found on our brand new sofa. Sitting in a chair brought no relief.
By the time John awoke to get ready for his day, I told him to dial 911. The pain on my right side - lower, middle, and upper abdominal pain that radiated to the back - again; all right sided. The pain was so intense and so bad that 911 seemed the only logical thing to do.
Was it my appendix?
Gallbladder?
Did I have stomach ulcers?
Well, during the what seemed like a 10 hour ambulance ride to the hospital (and I swear the driver hit every single pot hole he could) the EMT I was stuck with kept asking me the same questions over and over again. Is your appendix still in? Is your gallbladder still in? Have you ever been told you have ulcers?
By the time we got to the hospital, I was finally given something rather strong for the horrible pain that had me cursing and crying...
then, all the tests started.
First, a barrage of questions. Drinking? Drugs? Pregnant?
Blood tests, ultrasound, CT scan....
Then, a nurse came in to ask me if I could perhaps give a urine sample. I tried (with assistance) to get up and walk the 10 steps to the restroom. I immediately cried out in pain. Those 10 steps weren’t happening. They brought in a portable toilet for me to go in.
After that, the nurse had gotten some results all at once on her computer screen. We had yet to see the actual ordering doctor. I mean, we had seen one, just not the one who was ordering all the tests...
Knowing better, but desperately seeking answers anyway, I asked the nurse to tell us anything- ANYTHING...
The words I heard were
‘very enlarged liver’
‘a team of surgeons on their way’
‘liver biopsy’
‘spending several days here’
John would later tell me that I lost all color in my face, grabbed his hand and said “I need Olivia.”
He said I also asked for my mom.
Then the doctors came in. The tests have all confirmed what I was about to say. They just couldn’t believe what was happening. They seldom come across people who never drink and people who never do illegal drugs. They just met one on Thursday though.
My liver was so enlarged, and we could see the images of it- it was actually crushing a few organs. One of my kidneys is being bent in half, my liver is also hitting the diaphragm so abruptly and abrasively, that every time I take a sharp or deep breath, it’s so incredibly painful. I also had one of those upper GI’s done. That test showed several stomach ulcers.
Since the liver is still a fully functioning and operational liver - meaning- the only problem is that it’s just really big hitting organs and that any jolts to my person / body may make it hit vital organs- so I have to practice an abundance of caution, they say I don’t have a diseased liver. Just a HUGE liver. All tests prove it.
So, they think maybe some autoimmune attack happened to make my liver so large.
That’s where some of my pain was coming from. I am to have CT scans done every 3 months to monitor the growing or lack of growing (hopefully) of my liver. If the surgeon sees it approaching things that may kill me, they said they would operate. If I start to have severe trouble breathing, they will go in and operate.
As far as the ulcers are concerned; just some prescribed medication to help with that... taken around meal schedules and what not...
So there you have it.
A huge liver.
No fun in getting it that way. Just another shitty playing card in our already shitty hand of dealt cards.....
If I seem like I am miserable at times; I have every right to be... walk a minute; hell, walk a fucking second in my shitty ill healthed life and let me know how you feel...
Maybe you can find a magical chiropractor to fix ya...
But I doubt it.
Sunday, October 28, 2018
Saturday, September 29, 2018
Moments of Seniority
As a partial insomniac and someone in massive amounts of neuropathy pain, I find myself awake at the awful hour of 2:00 am.
On the heels of being really ill as well. I had some sort of chest cold/flu thing for the last several days... coughing, high fevers, some vomiting, joint pain, chest pain - on top of my chronic pain. Ugh. It has not been fun around our house lately. Just a blur of Lysol, NyQuil, tissues, antibiotics, electric heating blankets, orange juice, chicken noodle soup... you name it.
If the cliche’ image of a sickly person pops up in your head; complete with a cartoon bubble with an insanely big red nose and a thermometer sticking out of their mouths, chances are it has made at least one appearance at our place.
We all had our time with this awful sick big too. It always starts off with our daughter who goes back to school and brings it home and we all shake hands with the mighty big SICK bug.
No fun around here lately. Not at all.
But, we’re all getting a little better... a little. And the antibiotics seem to be working for all of us... so, with the illness of the flu leaving our house;
“Goodbye you evil bastard! Thanks for leaving! And no, we don’t validate parking!”
We now turn our attention to more important things. Things like senior pictures. That’s right. Our daughter has a picture frame that sits in our home- one of those picture frames that has a small photo of the years’ school picture in it. Starts at Kindergarten and ends with 12 th grade (and hopefully for all parties involved, there’s only one picture per school year. )
And the last slot filled was - can you guess?
Yes!
Her junior year was last filled...
tomorrow she is sitting for her senior portraits! How exciting!
In 4-6 weeks time, John and I can sit down and choose one or two exciting photos for her last year of school. We may even do a “baby ad” for her senior year. Lord knows I have a billion and a half baby pictures of our (not so little) little girl.
John is picking her up a bit early and I am going to provide her with a casual top. Her cap and gown portrait will be done as well... and of course a formal picture as well... oh gosh!!! Her senior year!
Our daughter is just growing in wonder!
And our daughter is so amazing too. A bit of time ago, she even stood up for me against something that was said to me and was a bit hasty in what she said, but nonetheless she stood up for me...
I just can’t get over how much time has gone by! I am just so thrilled that her last year of school is happening as I type up this new blogpost...
our little girl is going to be getting a dress this year (a fancy and gorgeous dress) and attending her senior prom. she will also probably skip school in the traditional honor of ‘senior skip day’. she will also be going on her senior class trip. there is just so much to enjoy during ones senior school year.
and my biggest wish is that she does them all and enjoys each and every senior year opportunity.
I look back at my own senior school year and I remember enjoying most of those aforementioned things.
So, as I end blogpost, I will just say that my daughter is going to love her senior year; if I can remember to just chill (for the most part) .
And as I bid you good night and try to get some sleep - despite my incurable and chronic neuropathy pain- I will try to sleep thinking of my daughter and her (hopefully outstanding) amazing senior school year.
Thursday, August 30, 2018
Do Some Googleing
Day two (in a row that I am writing in my blog). Day two million - or so it feels - that I am in such bad and unextinguishing (sp?) pain.
It starts in my toes (or toenails) and creeps up the actual toes and from there shoots up the foot (each one) and into my calves and passed my knees and into my thighs and straight into my forever hurting hips and of course up the spine where it takes its gruesome and beastly turns into the rest of my body (and if you’re wondering; yes, even my hair follicles hurt some days).
I do not expect anyone to completely fathom or interpret the abhorrent agony or beastly burning that I comprehend each and every day. There’s hardly sufficient or even suitable enough words (or variations thereof) to clearly demonstrate what it is I am trying to describe when it comes to my daily struggle - both physical and emotional. I need to rectify my own painful misery and also try to help and encourage my daughter and husband. And they both need to ward off many of their own physical afflictions. Life in our household has become a constant struggle with pain and woeful experiences.
As I stated above; I do not expect everyone to understand what we go through.
(and this is not a ‘Hey chick, there are those that have it worse.’)
Yes. I fuckin’ know that. I’ve been living underneath that umbrella of thought since my ordeal has started.
Those who have it worse than me and my own?
Read another blog and/or better yet, start your own.
Our spilling over plates just don’t have the adequate space for you and your ‘worse off’ issues.
Anyway.
If you don’t get what we go through; google our issues to at least attempt to perceive and discern them. That’s what I do when I don’t get something. I whip out my smartphone and google the shit out of e.v.e.r.y.t.h.i.n.g.
Back when I was your age, I had to actually go to a set of books called encyclopedias
(What? Encyclopedias? Is that like Wikipedia? Sure sounds like it.)
to figure shit out. I also frequently visited secret societies called libraries. Libraries were full of encyclopedias and other rectangular shaped items called books that were chock full of Wikipedia information. Then, and only then, did I open my mouth with an opinion on what I did not have previous knowledge of. (the preposition there can kiss my ass)
Good words to google are
- type 1 (that’s one and NOT two) diabetes
- small fiber neuropathy
-dysphagia
- Addison’s Disease
- Graves’ disease
When you’re brushed up on what plagues us everyday, please ask us questions. We’d be happy and actually relieved to answer your insightful queries on our health related problems.
I have had it to my eyeballs hearing how because you know a nurse in a doctor office or your cousins sister great aunts cat had the exact same health problem or problems that you’re now the ‘go-to-guru’ on all things health.
And for those who do not understand but who actually have sympathy and compassion for others who suffer an invisible ailment, thank you for your kindness and understanding. It truly means something to us. It really does.
Facebook and Instagram and all of those other ‘social’ websites are becoming more dopic by the day. So, by allowing stupidity to rear its head over and over again, these social websites are less social and more repulsive.
I hope that there will be days when the world and its goings on will look a bit brighter to me, because right now, all I see is painful despair. And in 2010, before my pain started, despair wasn’t even a word I would look up in the dictionary (oops; I mean I wouldn’t google it)
Let’s try to understand and uplift people. It’ll do a world of good for someone, I promise.
It starts in my toes (or toenails) and creeps up the actual toes and from there shoots up the foot (each one) and into my calves and passed my knees and into my thighs and straight into my forever hurting hips and of course up the spine where it takes its gruesome and beastly turns into the rest of my body (and if you’re wondering; yes, even my hair follicles hurt some days).
I do not expect anyone to completely fathom or interpret the abhorrent agony or beastly burning that I comprehend each and every day. There’s hardly sufficient or even suitable enough words (or variations thereof) to clearly demonstrate what it is I am trying to describe when it comes to my daily struggle - both physical and emotional. I need to rectify my own painful misery and also try to help and encourage my daughter and husband. And they both need to ward off many of their own physical afflictions. Life in our household has become a constant struggle with pain and woeful experiences.
As I stated above; I do not expect everyone to understand what we go through.
(and this is not a ‘Hey chick, there are those that have it worse.’)
Yes. I fuckin’ know that. I’ve been living underneath that umbrella of thought since my ordeal has started.
Those who have it worse than me and my own?
Read another blog and/or better yet, start your own.
Our spilling over plates just don’t have the adequate space for you and your ‘worse off’ issues.
Anyway.
If you don’t get what we go through; google our issues to at least attempt to perceive and discern them. That’s what I do when I don’t get something. I whip out my smartphone and google the shit out of e.v.e.r.y.t.h.i.n.g.
Back when I was your age, I had to actually go to a set of books called encyclopedias
(What? Encyclopedias? Is that like Wikipedia? Sure sounds like it.)
to figure shit out. I also frequently visited secret societies called libraries. Libraries were full of encyclopedias and other rectangular shaped items called books that were chock full of Wikipedia information. Then, and only then, did I open my mouth with an opinion on what I did not have previous knowledge of. (the preposition there can kiss my ass)
Good words to google are
- type 1 (that’s one and NOT two) diabetes
- small fiber neuropathy
-dysphagia
- Addison’s Disease
- Graves’ disease
When you’re brushed up on what plagues us everyday, please ask us questions. We’d be happy and actually relieved to answer your insightful queries on our health related problems.
I have had it to my eyeballs hearing how because you know a nurse in a doctor office or your cousins sister great aunts cat had the exact same health problem or problems that you’re now the ‘go-to-guru’ on all things health.
And for those who do not understand but who actually have sympathy and compassion for others who suffer an invisible ailment, thank you for your kindness and understanding. It truly means something to us. It really does.
Facebook and Instagram and all of those other ‘social’ websites are becoming more dopic by the day. So, by allowing stupidity to rear its head over and over again, these social websites are less social and more repulsive.
I hope that there will be days when the world and its goings on will look a bit brighter to me, because right now, all I see is painful despair. And in 2010, before my pain started, despair wasn’t even a word I would look up in the dictionary (oops; I mean I wouldn’t google it)
Let’s try to understand and uplift people. It’ll do a world of good for someone, I promise.
Tuesday, August 28, 2018
Wonderland Liquor
The pain on a given day; any given day is sometimes very difficult to put into writing. And let’s be honest here... it’s not just my physical pain and anguish; My Olivia has been dealing with much of her own pain, intolerable heartache and personal anguish herself. And we shouldn’t forget my dear and sweet loving husband. His own pain; what with never eating anything solid or delicious again and his day to day just becoming an older man pain that he experiences. It’s like we were all dealt this one hand of shitty playing cards and for some reason it’s missing all 52 cards. We’re short a shit ton of needed cards to be able to play a fair game of life.
Between our rare and abnormal health issues, we experienced a fire two years ago that made us realize how people treat those in need ... family or friends ... it didn’t matter. We got to know how those who hear about ones they love (or have said that they loved) - they hear we lost everything and still we were punished with heartache and disappointment.
In fact, it was my own father in law- someone none of us even speak to or even think about for that matter- who on the day I and John and Olivia lost ALL our worldly possessions (as few as they were) told me to “GO TO HELL” and called me a bitch. Yes, that is some of the responses we received after losing our home...
of course, there was much more saner responses that were kind and compassionate and many people- friends and family alike who helped or at least offered to help. So it wasn’t all bad. It’s just; there were others who were truly close to the situation and just did nothing. Nothing. And that was a shock and surprise to the three of us as we spent the holidays in a hotel room...
If I wasn’t in the terrible physical shape I am in, I would probably start to help others who truly need it. Because I know. I know what it’s like to be short a whole hand of cards and still lose at life.
It’s a hole that I and my family have been living out of for years now.
My spinal stenosis is getting worse. Yes. Worse. It was already horrible to begin with. But now I cannot walk the length of my house without crying out - wailing out - like just taking the next step is gonna literally kill me because it hurts that bad.
The doctors don’t think an operation can help. I mean, sure, they could go in and try, but I don’t think I wanna face anesthesia and the physical and unbearable pain of an operation for a “we’re not sure it would help” .
Yet, I guarantee that at the next gathering of my rather large family, I may not make it to because the literal even getting ready may be too much to take.... no matter the doses of large prescription painkillers that I use...
And I am sure there will be some of my extended family there that simply won’t understand and may make the usual comment of my absence- as if my presence at a gathering - no matter how much it hurts me not to go and spend that precious time... my not being at any family gathering breaks my heart each and every time.. these moments are a fleeting thing and one that cannot be given back...
But someone will ultimately and ignorantly mention how I am “not there again” and “I bet she doesn’t even like us” or “what a bitch” ... and that’s ok, because nobody understands me or my unbelievable horrible pain - pain that gets worse and more depressing every day. And again, it is the three of us who are experiencing various amounts of personal pain...
the last two months have been hell for me. Hell. I am unsure if actual Hell will be like this; but if it is, I will consider myself prepared nicely for it.
The hot burning in my feet is a great start for the lake of fire I will be swimming in.
Truthfully, I am almost positive that Heaven is where I’ll spend eternity; even so; it’s nice to know I am prepared for the worse while still hoping for the best.
Tonight is considerably difficult for me. The pain cannot be subdued for some reason. The tears have fallen and I have created a nice little collection of tissues and wipes and find myself wading in a lake of tears fit for Alice in Wonderland (minus the blue Eat Me cake).
If I do come across anything from Alice in Wonderland, I hope it’s a bottle that says “drink me” on it, and I truly hope it’s filled with hard liquor.
Between our rare and abnormal health issues, we experienced a fire two years ago that made us realize how people treat those in need ... family or friends ... it didn’t matter. We got to know how those who hear about ones they love (or have said that they loved) - they hear we lost everything and still we were punished with heartache and disappointment.
In fact, it was my own father in law- someone none of us even speak to or even think about for that matter- who on the day I and John and Olivia lost ALL our worldly possessions (as few as they were) told me to “GO TO HELL” and called me a bitch. Yes, that is some of the responses we received after losing our home...
of course, there was much more saner responses that were kind and compassionate and many people- friends and family alike who helped or at least offered to help. So it wasn’t all bad. It’s just; there were others who were truly close to the situation and just did nothing. Nothing. And that was a shock and surprise to the three of us as we spent the holidays in a hotel room...
If I wasn’t in the terrible physical shape I am in, I would probably start to help others who truly need it. Because I know. I know what it’s like to be short a whole hand of cards and still lose at life.
It’s a hole that I and my family have been living out of for years now.
My spinal stenosis is getting worse. Yes. Worse. It was already horrible to begin with. But now I cannot walk the length of my house without crying out - wailing out - like just taking the next step is gonna literally kill me because it hurts that bad.
The doctors don’t think an operation can help. I mean, sure, they could go in and try, but I don’t think I wanna face anesthesia and the physical and unbearable pain of an operation for a “we’re not sure it would help” .
Yet, I guarantee that at the next gathering of my rather large family, I may not make it to because the literal even getting ready may be too much to take.... no matter the doses of large prescription painkillers that I use...
And I am sure there will be some of my extended family there that simply won’t understand and may make the usual comment of my absence- as if my presence at a gathering - no matter how much it hurts me not to go and spend that precious time... my not being at any family gathering breaks my heart each and every time.. these moments are a fleeting thing and one that cannot be given back...
But someone will ultimately and ignorantly mention how I am “not there again” and “I bet she doesn’t even like us” or “what a bitch” ... and that’s ok, because nobody understands me or my unbelievable horrible pain - pain that gets worse and more depressing every day. And again, it is the three of us who are experiencing various amounts of personal pain...
the last two months have been hell for me. Hell. I am unsure if actual Hell will be like this; but if it is, I will consider myself prepared nicely for it.
The hot burning in my feet is a great start for the lake of fire I will be swimming in.
Truthfully, I am almost positive that Heaven is where I’ll spend eternity; even so; it’s nice to know I am prepared for the worse while still hoping for the best.
Tonight is considerably difficult for me. The pain cannot be subdued for some reason. The tears have fallen and I have created a nice little collection of tissues and wipes and find myself wading in a lake of tears fit for Alice in Wonderland (minus the blue Eat Me cake).
If I do come across anything from Alice in Wonderland, I hope it’s a bottle that says “drink me” on it, and I truly hope it’s filled with hard liquor.
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