~
Oh what I wouldn't give for some TPN right now.
You might not know what that means.
TPN stands for Total Parenteral Nutrition.
Which really means, "you get your 'food' through a tube".
I've had TPN before. More than once.
The first time I had TPN was ten years ago, when we discovered that my colon was simply 'not working, and my small intestines had rerouted themselves outside of my body. Which finally explained why my poop looked like coffee grounds and my color was the shade of Mrs. Middleton's dress.
I was in the hospital for over a month. I was in there for almost three weeks PRIOR to the surgery that removed oodles of feet of my guts, leaving my 12 inch scar that snakes north around my belly button, and I remained on TPN for the next week and a half while we waited to see if 'things were going to work'. Thankfully they did, and at some point I went home, craving mashed potatoes, after not having eaten for over a month.
The TPN that I was given consisted of one HUGE bag, I mean HUGE bag, of a thick, clear, yellow liquid, accompanied by a glass bottle of 'white' stuff. The bag of liquid was made up of all the nutrients and minerals that my body needed while unable to eat food. Interestingly, the glass bottle of white stuff was lipids. In other words, FAT. Yep. Your body needs fat. In my case, one glass bottle a day!
When I had visitors, they would of course stare at the millions and millions of tubes and that HUGE bag of yellow stuff, that they probably thought was pee, but why the heck is it strung up on an IV pole? Billy would joshingly tell them, "The yellow bag is Bud Lite, and the white stuff is her glass of milk." Which always brought a smile to my face, as well as the faces of the visitors.
Yeah, I wish I had some TPN right now.
For all intents and purposes, LITERALLY for ALL intents AND purposes, I have stopped eating. Pretty much. Ceased. This didn't start out as a conscious decision, mind you. Until now, I have never had an eating disorder in my life. If I ever starved myself, it was most likely due to nerves, anxiety, or in preparation for surgery.
But now? Well, I have these 80 pounds to lose. Actually, I only have 20 more to go, YAY ME!. Part of the reason I 'stopped' eating is because well, it hurts less. And I don't have to poop if I don't have to eat, and oh, life without poop what a glorious life that would be. So I drink. A lot. Not THAT kind of drink. THAT kind of drink makes me HURT REALLY REALLY BAD, so um, no Tanqueray for me, dammit. I drink alot alot.
So I was wondering how this 'accidental' aneorexia of mine was affecting my health. So I had blood work done at the behest of my primary doc. And the results came back. All within 'normal' levels, meaning, 'my' range of normal, which would never be the same as 'your' range of normal.
I was bewildered. I asked him, "How can that BE? I have STOPPED eating!" And he said, "Well, as long as you aren't dehydrated, your bloodwork may not show any abnormalities." Which made me think of all the others out there who have a REAL eating disorder problem (yes, mine is only temporary, no, I am not making light of eating disorders, and no, you can't possibly understand my choice to temporarily subsist on crystal lite and go-gurt unless you yourself have Crohn's Disease, so please don't judge me)....
And I thought, so this is how they can 'hide' it. Because unless they confess it, like I openly do, it might go undetected. And for 'them', going to a doctor and having bloodwork done just might be a cry for help, only to be told 'all is normal, goodbye'. This has disturbed me for weeks now, and I don't quite know why.
Okay, now that I went completely off-topic, yeah, I wish had some TPN right now. Cuz I'm not hungry. But I forced myself to eat one tiny slice of pizza for Mother's Day today. And yes, as I type this, it is 12:20am. Because my guts woke me up. And up I am, wishing for TPN.
~
Monday, May 9, 2011
Monday, May 2, 2011
My Life In Conjuction with ROIDS
~
I hate em.
I really do.
I never had the chance to love them, quite actually. (I've noticed my writing has taken a bit of a British spin in the past four days, to which I can only attributed the OVERcoverage of THE wedding. Not that i didn't watch THE wedding, of course I did, and days worth of replays, but I wasn't quite expecting the impact that the event would have on my diction.)
Back to the hated roids.
I first got roids when I first got diagnosed. Eleven years ago, actually.
The first doctor (GI) I had was a steroid guy, and not a surgery guy, and not a 'hottest drug on the shelf' guy.
It took me a year and two blown out knees from steroid damage to the tune of 180mg per day for about 6 months to decide to fire THAT guy and inevitably hire TFG.
Seriously, we had just gotten married, and came home from our honeymoon, and I just started to inflate like a Macy's balloon. Being new to the 'sick for the rest of your life' club, I hadn't yet learned the need to question, question, question, press, fire, hire, press, question, research, question, question, question.
And keep in mind, the internet was really only sprouting wings about this time. But at this time, in 2000, I did have the "Mother's Medical Encylopedia" that MY mother gave to me, which I am certain was published somewhere between 1952 and 1969. Amazingly, it's in color. So when I couldn't find what I wanted on the internet one nite, I went to Old Mother Hubbard's Cubbard for the 80 pound tome. Hmmmm. imagine that. Crohn's Disease was not in the Mother's Medical Encyclopedia. Nope. Nor was Ileitus. Or Colitis. Or Inflammatory Bowel Disease. Or the words autoimmune disease. FRICK A FRACK A FRICK A FRACK
So here I am, looking like the Pillsbury DoughBoy, sprouting hair on my face that most certainly belonged to one of my brothers, getting acne for the first time since 1987 when I worked at McDonald's for one month, and had to PEEL the french fry grease off of my face each night when I got home, and no matter what I bathed with, I still smelled like a french fry, and my zits were on a mission. from God. Clearly. They were everywhere.
So, bactrack. My guts (intestines) are poofy and pulpy and clearly 'distended' , yeah, try looking THAT one up mama's bandaid book! Dr. ROIDS A ROT tells me I need to take the roids, that i have limited options. yeah, no duh, dude. so i took them as he prescribed them because really, how would have known THEN that 180mg of prednisone a day could potentially decimate my liver?
And that night. OMG that night. That night when my parents were sleeping at our house because we lived between them and the hospital that my dad had a heart cath scheduled for very early the next morning. That night, we all went to bed. Billy and I had to be up for work in the morning, but my parents might leave before we see them, but we should see them in the evening, as he would sleep one more night at our house before they headed 'home'.
So, let's assume that EVERYone is fast asleep, including me.
And then the fight started. *actually there wasn't a fight of any kind, I just love saying that and don't get the opportunity to do so....
I bolted up in bed, bent in half at the hip.
I was screaming, screaming, SCREAMING in pure horriffic agony.
I didn't know what was causing this pain I had never experienced before.
I bolted up in bed because I thought I had been dreaming that Billy was simultaneously sawing off both of my legs at the knees.
THAT was the pain.
THAT was NOT happening.
No, my husband had not gotten all "Sweeney Todd" on me.
So now we have pain, now we have poof, now we have back acne and gross facial hair and as I soon find out, yet another crazy ass diagnosis, given to me in the ER 8 or 10 hours later that day,
The steroids were used to keep my Crohn's Disease in a minimal state of inflammation. However, the dosage, and the dosed length of time were CLEARLY an overdose. And spots of my knees literally 'blew out'. Like when a football player 'blows' out a knee. Yeah, my knees blew out. They blew out CHUNKS of DEAD BONE which had been siphoned from their air supply by the dastardly ROIDS. My legs were so swollen that I could not bend either knee. I wrapped them, I iced them, I popped any and all pills for them. To no avail. The agony continued with no ecstasy in my near future. But what did happen is I got a new doctor, who said that dose of ROIDS was simply ridiculous, and he promised me ON THAT DAY, that he would only use steroids in my care plan after much conversation and all other options were no longer optional. For the most part, he has kept his word. Four months later, I had nine feet of my entrails removed. Talk about a fun time! WOOHOO! Never better! Alas, two months later, I was treated to a 2/1 deal. Sorta. The bone guy and the rhematologist guy unanimously agreed that I now had AVASCULAR NECROSIS or as is now commonly called OSTEO NECROSIS which translated literally means BONE DEATH. Yeah. Precisely. Thirty years old, active all my life, dead bones in my knees. Nice. So I have the surgery. He did both knees on the same day. He said it was better for me 'that way'. I wasn't seeing his logic. And I barely remember how the hell I got along with two sliced up knees and a cane. Thankfully I had just been fired from my job, so I had a little bit of time to recover while I hoped the phone would ring with a fabulous job offer. And I did recover, and it did ring, and i got the offer, and I started my brand new job popping 2-3 Percocets every four hours. But, I recovered.
And guess what? Roids are back in my life. Yeah, I know, it sucks. But it is what it is. It's a very low dose, nowhere near the 180mg nonsense. Ugh. But I need them right now. As I now continue to exhibit and experience more and more symptoms of inflammation along the lines of rheumatoid arthritis, steroids are once again on my side. For a little while only, I hope.
I need a doctor to say in writing YES YOU HAVE RA, and then I continue with Remicade which treats Crohns AND RA and get on board with another anti-inflammatory, like maybe methotrexate (and you think I'm a germophobe NOW???? Oh boy)
In the meantime, I hate Roids.
Because it is 1152pm and my knees and hips are raging, screaming for pain control,
Because it is 1152pm and I can't sleep, not just from the pain, but from the insomnia powers of the ROIDS.
Because it is 1152pm and I can't sleep, not just from the pain, not just from the insomnia, but now, because of the hot flashes from the ROIDS.
My life sometimes sounds like this lately:
If I could just get comfortable, maybe I could....
Well if it weren't so hot in here, I could....
I can't sleep. WTF. ROIDS.
Maybe I'll go and find that 800 pound volume of Mother's Medical Encyclopedia and bore myself to sleep with whooping cough, the common cold, mumps, measles, impetigo, chicken pox. And perhaps I might even write a chapter or two on every other 'current' malady that is 'out there and add it to my own copy of the book, in case some other mother on some other day needs to know what Osteo Necrosis is.
If, that is, my Ambien doesn't kick in in t-minus 8 seconds and counting.
I hate em.
I really do.
I never had the chance to love them, quite actually. (I've noticed my writing has taken a bit of a British spin in the past four days, to which I can only attributed the OVERcoverage of THE wedding. Not that i didn't watch THE wedding, of course I did, and days worth of replays, but I wasn't quite expecting the impact that the event would have on my diction.)
Back to the hated roids.
I first got roids when I first got diagnosed. Eleven years ago, actually.
The first doctor (GI) I had was a steroid guy, and not a surgery guy, and not a 'hottest drug on the shelf' guy.
It took me a year and two blown out knees from steroid damage to the tune of 180mg per day for about 6 months to decide to fire THAT guy and inevitably hire TFG.
Seriously, we had just gotten married, and came home from our honeymoon, and I just started to inflate like a Macy's balloon. Being new to the 'sick for the rest of your life' club, I hadn't yet learned the need to question, question, question, press, fire, hire, press, question, research, question, question, question.
And keep in mind, the internet was really only sprouting wings about this time. But at this time, in 2000, I did have the "Mother's Medical Encylopedia" that MY mother gave to me, which I am certain was published somewhere between 1952 and 1969. Amazingly, it's in color. So when I couldn't find what I wanted on the internet one nite, I went to Old Mother Hubbard's Cubbard for the 80 pound tome. Hmmmm. imagine that. Crohn's Disease was not in the Mother's Medical Encyclopedia. Nope. Nor was Ileitus. Or Colitis. Or Inflammatory Bowel Disease. Or the words autoimmune disease. FRICK A FRACK A FRICK A FRACK
So here I am, looking like the Pillsbury DoughBoy, sprouting hair on my face that most certainly belonged to one of my brothers, getting acne for the first time since 1987 when I worked at McDonald's for one month, and had to PEEL the french fry grease off of my face each night when I got home, and no matter what I bathed with, I still smelled like a french fry, and my zits were on a mission. from God. Clearly. They were everywhere.
So, bactrack. My guts (intestines) are poofy and pulpy and clearly 'distended' , yeah, try looking THAT one up mama's bandaid book! Dr. ROIDS A ROT tells me I need to take the roids, that i have limited options. yeah, no duh, dude. so i took them as he prescribed them because really, how would have known THEN that 180mg of prednisone a day could potentially decimate my liver?
And that night. OMG that night. That night when my parents were sleeping at our house because we lived between them and the hospital that my dad had a heart cath scheduled for very early the next morning. That night, we all went to bed. Billy and I had to be up for work in the morning, but my parents might leave before we see them, but we should see them in the evening, as he would sleep one more night at our house before they headed 'home'.
So, let's assume that EVERYone is fast asleep, including me.
And then the fight started. *actually there wasn't a fight of any kind, I just love saying that and don't get the opportunity to do so....
I bolted up in bed, bent in half at the hip.
I was screaming, screaming, SCREAMING in pure horriffic agony.
I didn't know what was causing this pain I had never experienced before.
I bolted up in bed because I thought I had been dreaming that Billy was simultaneously sawing off both of my legs at the knees.
THAT was the pain.
THAT was NOT happening.
No, my husband had not gotten all "Sweeney Todd" on me.
So now we have pain, now we have poof, now we have back acne and gross facial hair and as I soon find out, yet another crazy ass diagnosis, given to me in the ER 8 or 10 hours later that day,
The steroids were used to keep my Crohn's Disease in a minimal state of inflammation. However, the dosage, and the dosed length of time were CLEARLY an overdose. And spots of my knees literally 'blew out'. Like when a football player 'blows' out a knee. Yeah, my knees blew out. They blew out CHUNKS of DEAD BONE which had been siphoned from their air supply by the dastardly ROIDS. My legs were so swollen that I could not bend either knee. I wrapped them, I iced them, I popped any and all pills for them. To no avail. The agony continued with no ecstasy in my near future. But what did happen is I got a new doctor, who said that dose of ROIDS was simply ridiculous, and he promised me ON THAT DAY, that he would only use steroids in my care plan after much conversation and all other options were no longer optional. For the most part, he has kept his word. Four months later, I had nine feet of my entrails removed. Talk about a fun time! WOOHOO! Never better! Alas, two months later, I was treated to a 2/1 deal. Sorta. The bone guy and the rhematologist guy unanimously agreed that I now had AVASCULAR NECROSIS or as is now commonly called OSTEO NECROSIS which translated literally means BONE DEATH. Yeah. Precisely. Thirty years old, active all my life, dead bones in my knees. Nice. So I have the surgery. He did both knees on the same day. He said it was better for me 'that way'. I wasn't seeing his logic. And I barely remember how the hell I got along with two sliced up knees and a cane. Thankfully I had just been fired from my job, so I had a little bit of time to recover while I hoped the phone would ring with a fabulous job offer. And I did recover, and it did ring, and i got the offer, and I started my brand new job popping 2-3 Percocets every four hours. But, I recovered.
And guess what? Roids are back in my life. Yeah, I know, it sucks. But it is what it is. It's a very low dose, nowhere near the 180mg nonsense. Ugh. But I need them right now. As I now continue to exhibit and experience more and more symptoms of inflammation along the lines of rheumatoid arthritis, steroids are once again on my side. For a little while only, I hope.
I need a doctor to say in writing YES YOU HAVE RA, and then I continue with Remicade which treats Crohns AND RA and get on board with another anti-inflammatory, like maybe methotrexate (and you think I'm a germophobe NOW???? Oh boy)
In the meantime, I hate Roids.
Because it is 1152pm and my knees and hips are raging, screaming for pain control,
Because it is 1152pm and I can't sleep, not just from the pain, but from the insomnia powers of the ROIDS.
Because it is 1152pm and I can't sleep, not just from the pain, not just from the insomnia, but now, because of the hot flashes from the ROIDS.
My life sometimes sounds like this lately:
If I could just get comfortable, maybe I could....
Well if it weren't so hot in here, I could....
I can't sleep. WTF. ROIDS.
Maybe I'll go and find that 800 pound volume of Mother's Medical Encyclopedia and bore myself to sleep with whooping cough, the common cold, mumps, measles, impetigo, chicken pox. And perhaps I might even write a chapter or two on every other 'current' malady that is 'out there and add it to my own copy of the book, in case some other mother on some other day needs to know what Osteo Necrosis is.
If, that is, my Ambien doesn't kick in in t-minus 8 seconds and counting.
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