Hi there my AF family. It's too long to explain now, but I've been in the hospital since last Tuesday morning. I'd appreciate any good thoughts, prayers, whatever you might send my way. Thanks.
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I'm in my least favorite place
- Thread starter MoodyBlues
- Start date
Bummer. A week in a hospital bed isn't a trivial matter but I truly hope it's something fixable/curable/repairable. Best wishes and all kinds of warm thoughts are now coming out your way.
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Just saw this due to the site issues. Get better whatever it is and get back to your house asap.
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When I read the thread title I assumed your family took you to a steakhouse or something. For a vegan that would be my worst place. My family tries to pull that stuff when birthdays come up for other family members, and I just sit there awkwardly...
Feel better soon my friend.
Feel better soon my friend.
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Hey there, boys and girls! I finally have a laptop, so I thought I'd give an update without hunting and pecking and squinting into my phone. 
TLDR version: I can't walk.
Verbose version: Last Tuesday morning I attempted to get up to pee, but my legs had other ideas. Over the last 3-4 months, this strange weakness/tiredness/numbness started making my upright time shorter and shorter, like I could stand in my kitchen to make overnight oats, and also be running back and forth letting the dog out and in, bringing in mail and packages, putting away groceries, etc., 45 minutes or more at a time. But then my legs started feeling weak and tired, and I kept having to sit down--and the time standing got shorter and shorter until it was zero. I saw my primary care physician twice--once in April then two weeks later, in May, to review labs. As with every other issue I've EVER had, everything was normal. But I was not. He said I needed physical therapy, and you can probably guess how that went over... I said "I CAN'T WALK. I CAN'T FEEL MY [BLEEPING] FEET ON THE FLOOR. MY LEGS ARE NUMB!
" So I asked for a referral to a neurologist, which I got--but that doctor was away for several weeks, with a first available appointment the second week of July, which I took.
Last Tuesday, I looked down to make sure both feet were flat on the floor and stood up; I attempted to take a step--and fell over like a tree being cut down. The back of my head bounced off my hardwood floor. 911 was called, I went to the same hospital that saved my life when septic shock shut down three organs. We spent days trying to figure out WTF.
When I got there, I was 100% sure that it was my spinal stenosis progressing to cauda equina syndrome--and the ER doctor agreed, it fit perfectly. We got the results from the spine MRI....and it said SORRY, YOU'RE WRONG!! I was admitted, various specialties saw me, including multiple neurologists, many tests were done, and while there the numbness kept creeping upward; it had been about waist-level upon arrival, it was now just under my breasts.
Along the way, I had an abdominal CT scan--because I hadn't been pooping--and that night a surgeon came bursting into my room and asked "are you aware of your appendix?" Uh....I know I HAVE one. "You have appendicitis. You should be in extreme pain. If we don't get it out right away, it'll rupture and you'll get sepsis, and you've already survived that once. We don't want it to happen again." "So....RIGHT NOW?" "Tomorrow." And out went my appendix. To my surprise, I was in A LOT of post-op pain!
There's much more involved, but I've been transferred to another hospital and we're still trying to hone in on the actual issue. Guillain Barre Syndrome was initially ruled out based on the lumbar puncture, however the doctors here feel that that isn't a definitive way of ruling it out. Like you can rule it *in* based on spinal fluid proteins, but not necessarily *out*--so we're talking plasmaphoresis and/or IVIG treatment. Everything's up in the air, and I'm sure if you know me, you know dealing with uncertainty is not my forte--I like everything to be clear, logical, make sense, let's do X and then Y will happen... But right now, no, it's not like that. Also, since admission, I've blown no less than 20 IVs, so they're going to insert a PICC- or midline today. Back in my 6-month sepsis hospitalization, I always had PICC lines. We'll see.
Hope you're all well and happy. Is it hot enough for you where you are? We're in for [yet more] record-breaking hot temperatures...
TLDR version: I can't walk.
Verbose version: Last Tuesday morning I attempted to get up to pee, but my legs had other ideas. Over the last 3-4 months, this strange weakness/tiredness/numbness started making my upright time shorter and shorter, like I could stand in my kitchen to make overnight oats, and also be running back and forth letting the dog out and in, bringing in mail and packages, putting away groceries, etc., 45 minutes or more at a time. But then my legs started feeling weak and tired, and I kept having to sit down--and the time standing got shorter and shorter until it was zero. I saw my primary care physician twice--once in April then two weeks later, in May, to review labs. As with every other issue I've EVER had, everything was normal. But I was not. He said I needed physical therapy, and you can probably guess how that went over... I said "I CAN'T WALK. I CAN'T FEEL MY [BLEEPING] FEET ON THE FLOOR. MY LEGS ARE NUMB!
" So I asked for a referral to a neurologist, which I got--but that doctor was away for several weeks, with a first available appointment the second week of July, which I took.Last Tuesday, I looked down to make sure both feet were flat on the floor and stood up; I attempted to take a step--and fell over like a tree being cut down. The back of my head bounced off my hardwood floor. 911 was called, I went to the same hospital that saved my life when septic shock shut down three organs. We spent days trying to figure out WTF.
When I got there, I was 100% sure that it was my spinal stenosis progressing to cauda equina syndrome--and the ER doctor agreed, it fit perfectly. We got the results from the spine MRI....and it said SORRY, YOU'RE WRONG!! I was admitted, various specialties saw me, including multiple neurologists, many tests were done, and while there the numbness kept creeping upward; it had been about waist-level upon arrival, it was now just under my breasts.Along the way, I had an abdominal CT scan--because I hadn't been pooping--and that night a surgeon came bursting into my room and asked "are you aware of your appendix?" Uh....I know I HAVE one. "You have appendicitis. You should be in extreme pain. If we don't get it out right away, it'll rupture and you'll get sepsis, and you've already survived that once. We don't want it to happen again." "So....RIGHT NOW?" "Tomorrow." And out went my appendix. To my surprise, I was in A LOT of post-op pain!
There's much more involved, but I've been transferred to another hospital and we're still trying to hone in on the actual issue. Guillain Barre Syndrome was initially ruled out based on the lumbar puncture, however the doctors here feel that that isn't a definitive way of ruling it out. Like you can rule it *in* based on spinal fluid proteins, but not necessarily *out*--so we're talking plasmaphoresis and/or IVIG treatment. Everything's up in the air, and I'm sure if you know me, you know dealing with uncertainty is not my forte--I like everything to be clear, logical, make sense, let's do X and then Y will happen... But right now, no, it's not like that. Also, since admission, I've blown no less than 20 IVs, so they're going to insert a PICC- or midline today. Back in my 6-month sepsis hospitalization, I always had PICC lines. We'll see.
Hope you're all well and happy. Is it hot enough for you where you are? We're in for [yet more] record-breaking hot temperatures...
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No good Moody! Hoping you're back on your feet in no time flat. Keep the updates, and progress, coming but just yuck.
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You're a vegan? Here this whole time I thought you were a deer hunter given your profile pic.
Get better Moody!!
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Nope, never a deer hunter. My profile pic was a friend's pet deer I visited named Jack. Pretty much an overgrown hooved dog who ate anything (including my Galaxy SIII).
Moody once thought the same. I'm a deer lover and yes, vegan. Vegan since 2010.
Moody once thought the same. I'm a deer lover and yes, vegan. Vegan since 2010.
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I just got back into AF Moody. I'm so sorry you are having medical issues. I hope they get to the cause soon and get you back on your feet. (literally) All good thoughts your way...
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That's what everyone thinks--I know I did, way back when. I was so shocked, and thrilled, that Nick and I are on the same page when it comes to loving all sentient beings and, no, he doesn't kill deer, he pets and talks to them, and has had some lovely, long-lasting relationships with some, just like people do with their cats and dogs.
Thank you! Believe me, I'm doing all *I* can do.
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My then-current IV blew yesterday; 4 people and their multiple attempts to start a new one alll failed. They didn't get around to placing the midline or PICC line yesterday, but will do it today. Since they couldn't give me morphine IV, I took a morphine pill and it worked pretty well, but not as well as IV. That will hopefully be up and running again soon.
I cannot BELIEVE I'm in the hospital again, almost two weeks now, and if this turns out to be GBS (and I'm pretty sure it will), there is no cure, however with proper treatment you can regain your ability to walk and everything--but, like my experience with sepsis, there will be a multi-year recovery period. Really? AGAIN?!
About 4 years ago--when I was SURE I no longer needed them--I donated most of my 'illness' things to the Pasadena Convalescent Society, like my shower chair and bedside commode. During the last 3-4 months, as my ability to stand wound down to nothing, I bought a new shower chair and also had my Rollator (a walker that has a seat) and wheelchair brought in from the garage. When I saw my PCP twice (April and May), I was back in a wheelchair--which I hadn't been for like 4-5 years--but that didn't alarm him, and he prescribed physical therapy. Asshole. Before sepsis, my PCP was the internist on my brain surgery team; he practices in downtown LA (at House Ear Institute), not here in Arcadia, but I liked him so much and he was so familiar with the brain tumor-related stuff that I chose to see him despite the drive. But toward the end of my 6-month sepsis hospitalization, I started being told "your primary doctor has ordered blah blah blah...." and they meant some random doctor affiliated with that hospital who was ordering my meds and treatment. When I was discharged, still so desperately ill and weak, I was discharged in his care, so I saw him. I always intended to go back to the PCP I *really* loved, but it just never happened. And the one I have now is a [bleeping] asshole!
I cannot BELIEVE I'm in the hospital again, almost two weeks now, and if this turns out to be GBS (and I'm pretty sure it will), there is no cure, however with proper treatment you can regain your ability to walk and everything--but, like my experience with sepsis, there will be a multi-year recovery period. Really? AGAIN?!
About 4 years ago--when I was SURE I no longer needed them--I donated most of my 'illness' things to the Pasadena Convalescent Society, like my shower chair and bedside commode. During the last 3-4 months, as my ability to stand wound down to nothing, I bought a new shower chair and also had my Rollator (a walker that has a seat) and wheelchair brought in from the garage. When I saw my PCP twice (April and May), I was back in a wheelchair--which I hadn't been for like 4-5 years--but that didn't alarm him, and he prescribed physical therapy. Asshole. Before sepsis, my PCP was the internist on my brain surgery team; he practices in downtown LA (at House Ear Institute), not here in Arcadia, but I liked him so much and he was so familiar with the brain tumor-related stuff that I chose to see him despite the drive. But toward the end of my 6-month sepsis hospitalization, I started being told "your primary doctor has ordered blah blah blah...." and they meant some random doctor affiliated with that hospital who was ordering my meds and treatment. When I was discharged, still so desperately ill and weak, I was discharged in his care, so I saw him. I always intended to go back to the PCP I *really* loved, but it just never happened. And the one I have now is a [bleeping] asshole!
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Oh, no! @MoodyBlues , if it ain't one dang thing it's another. After all the tumor, the sepsis, losing Joy Noelle and now THIS?! I can't tell you how I feel in the moment about this. In one way, I feel glad that someone, at some hospital, finally took your complaint seriously and began treating the right thing; in another, enraged that board-certified quacks took so long to diagnose the problem because your symptoms didn't fit their flow charts and they can't actually think anymore; in yet another, an incredible respect for your strength and character in going through this much and not pushing up daisies (for Nick's deer to eat). The fact you're still among us is cause enough for you to write a book about it all as an encouragement to others:
"Be Too Stubborn to Give Up!"
"Be Too Stubborn to Give Up!"
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Moody, I feel really awful for what is going on with you and that I wasn’t able to be in the know until now because of the issues with AF.
I truly hope they can find a resolution that gives you back some of your mobility and independence; what an awful time you’ve had of it these past few years and especially these last two weeks. I’ll keep you in my prayers and hope the PICC line helps with their care for you.
All the best, always!
I truly hope they can find a resolution that gives you back some of your mobility and independence; what an awful time you’ve had of it these past few years and especially these last two weeks. I’ll keep you in my prayers and hope the PICC line helps with their care for you.
All the best, always!
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Thanks everyone for the awesome support and kind words. I knew I could count on my AF family.
BTW, the hospital I got transferred to is in..... drum roll, please.... @ocnbrze territory, West Covina! In case anyone thinks I've made up or embellished my medical issues, he can come visit--and read my very thick chart! 
BTW, the hospital I got transferred to is in..... drum roll, please.... @ocnbrze territory, West Covina! In case anyone thinks I've made up or embellished my medical issues, he can come visit--and read my very thick chart!
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i can't readThanks everyone for the awesome support and kind words. I knew I could count on my AF family.
BTW, the hospital I got transferred to is in..... drum roll, please.... @ocnbrze territory, West Covina! In case anyone thinks I've made up or embellished my medical issues, he can come visit--and read my very thick chart!
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Yay! The PICC line specialist nurse came in a couple hours ago; he found a good vein [via ultrasound] and inserted the midline successfully on his first try! 
As for those black circles, you do know that black's the new black, right? Black, randomly-shaped splotches all over your arms are quite the new fashion statement! Tres chic, eh? (Think blown, and/or unsuccessful attempts at, IVs.) The great thing about these new fashion accessories is they eventually CHANGE COLOR! Yes, from deep, dark black to blackish purple, to purplish green, then greenish yellow, then yellow and then...poof!, they're gone.
As for those black circles, you do know that black's the new black, right? Black, randomly-shaped splotches all over your arms are quite the new fashion statement! Tres chic, eh?
(Think blown, and/or unsuccessful attempts at, IVs.) The great thing about these new fashion accessories is they eventually CHANGE COLOR! Yes, from deep, dark black to blackish purple, to purplish green, then greenish yellow, then yellow and then...poof!, they're gone.
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The last time I saw spots like that was in the third season of SeaQuest DSV, the GELF (Genetic enhanced life form) character Dagwood who was a lovable teddy bear kinda guy had those spots all over.
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Like many others I haven't been able to access AF. Wow Moody you seem to have had a bit of bad luck health wise, praying for a speedy recovery and you get home soon.
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So grateful they “picc’d the right spot!Yay! The PICC line specialist nurse came in a couple hours ago; he found a good vein [via ultrasound] and inserted the midline successfully on his first try!
View attachment 167418
As for those black circles, you do know that black's the new black, right? Black, randomly-shaped splotches all over your arms are quite the new fashion statement! Tres chic, eh?
May there be no further complications and the beginning of a solid recovery from here on out!
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