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 November 22, 2008, 12:41:31 PM
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Tonight/last night (I just got back and it's morning) I went with a friend of mine to get prescriptions and food, then we went to Mickey Finn's bar in Libertyville, whereupon I bought both rounds, including barleywine and rye beer and something called "Wee Heavy". I had just started on the second beer whereupon I suddenly passed out and fell on the floor, then was helped back up, then within a minute or two I passed out again onto the floor. I'd had one Vicodin earlier, but that's no cause, normally. Both times I wasn't aware at first that I was on the floor and still thought I was sitting at the bar.
Before I knew it paramedics were there; my friend had called them. I was taken to the ER of the hospital I'm going to in a few days for some urgent GI tract tests already. I have to say it was scary and disorienting but the ER team there were by far the nicest and most respectful medical team or group of any kind that I've ever encountered in my life, including the doctor, startlingly enough. Absolutely no negative moments or contempt, which I can expect from many doctors especially regarding the light hypersensitivity I have. I've had doctors sneer at me over this and switch on bright fluourescent lights in my face, including at my last ER visit, at another hospital. The team tonight was all women.
The doctor wanted me to stay for a day for a neurologist to see me, but I'd been dreading for 25 years just this situation where I'd have to stay in a hospital, because I can't. The light was already gradually doing more to my nervous system even with them being nice enough to take all the precautions they could take. I had to get back here to the dark bedroom. She understood. That was amazing. I know the risk of going home and it scares me, but after an IV of fluids I'm stable and on my feet. I have had high blood pressure fotr years, but suddenly tonight it fell enough to knock me unconscious.
She says the GI tests are the right next thing to do, and my gut is definitely a big problem now, and must be connected to this, so I think a neurologist can safely go on the back burner.
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"You're better than normal! You're ABnormal!"-- Fry to Leela, who's self-conscious about her single eye, Futurama
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November 23, 2008, 02:04:03 AM
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This was an emergency room team. I'll only see them again if I pass out again in that particular town. Also they just put fluids in me and did some scans which didn't show anything, then said I had to stay in the hospital and I then couldn't. Now on sunday I'm worse and very worried. I know I need to be under observation with an IV and I had to just go home.
I'll paste here what I'm sending out in three or four e-mails as a PS to the above story:
Saturday-- (today) I'm worse today and think I can't supply my body with what I need at home because of damaged absorption or something, from the GI problem i guess. The IV at the ER got me stable but drinking fluids at home isn't doing what the IV did. I stopped my high blood pressure pills but heart pounding, flushed, light headed, fear blacking out since I had less warning when I passed out before, I never expected it but now feel as if I could.
Friends Mark and Cathleen are great and extremely kind and helpful but underestimate danger from light in a hospital stay so i feel extremely alone on that issue and could really use support and involvement especially since my thinking is more clouded each minute tonight. I might need someone to help speak for me or something. I'm e-mailing this to several people, I think you know my phone number. Have to stop.
Anyway Monday I hope to make all the hard medical phone calls I need to.
This is a sort of unspecific SOS as I feel awareness slipping. Sorry but please of I could hear from some of you with your wits more about you I'd be very grateful.
j
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"You're better than normal! You're ABnormal!"-- Fry to Leela, who's self-conscious about her single eye, Futurama
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November 23, 2008, 06:11:46 PM
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Wow this is a bit of shock.! I agree with Jas, if you perhaps get an eye patch/cover etc. I know the light will still efect you regardless of the patch but it might help just a little to allow you to GET BACK TO HOSPITAL. How far from your home are your friends Mark and Cathleen ? If you can ask them to be on call, or stay with you just for a few days (you really do need someone by yourside at this time.) PLEASE PLEASE Jason ring someone now, don't leave it any longer. I know it's not easy but try to relax abit, deep breathing . Please keep us posted if you can, I know Im across the other side of the world but if there is anything I can do for you please don't hesitate to ask. It's so hard being miles away from you when I just want to reach out and help, be strong, this will get sorted  xxxxx Sammy
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November 24, 2008, 02:02:44 AM
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I think I'm understanding MCS now I've researched some more. In saying get an eye patch, this wouldn't help much at all. I just want to see you get the help you need and deserve Jason xxx and some times say things I shouldn't , stuff that would pi**s me off, so sorry I do understand more so now I'm just worried. Thanks both of you... please realize that the light hypersensitivity is more severe than you're thinking, and that I am totally aware of needing to be in the hospital NOW. That's the nightmare. I'm asking people to see how much I'm between a rock and a hard place.
Monday night is a possibility for going back, maybe a remote one, but someone may help talk to someone there for me tomorrow. I did some work today on all this despite being half unconscious. I took risk of taking a vicodin, okay so far, may help sleep. No alcohol.
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November 25, 2008, 02:20:37 AM
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I think I'm understanding MCS now I've researched some more. In saying get an eye patch, this wouldn't help much at all. I just want to see you get the help you need and deserve Jason xxx and some times say things I shouldn't , stuff that would pi**s me off, so sorry I do understand more so now I'm just worried. I'M NOT IN THE HOSPITAL TONIGHT! Pasted from posts and e-mails to people, last two days: Monday The task today is trying to handle getting back into that hospital safely with the light sensitivity allowed for, when I can't think well enough to plead my case for that with hospital staff. An EI friend in Canada says she'll call on my behalf today. On the plus side I feel like I could keep it on an outpatient basis now that I've gotten sleep. i'd kill to just be allowed to sleep for a week. Thing is, I'm not getting hydrated or getting nutrients well w/o an IV. I bloat up when I eat food and have to expel it to make the pain from internal pressure tolerable. The one reason known for the passing out was dehydration. I think nothing I put in me gets to where it's supposed to go. Well some does. Vicodin might have helped-- a pharmacist told me it shouldn't affect blood pressure, and mine is up again. I have a home test machine. So I took my blood pressure pills. I'm tempted to call off the new ER visit and hospital stay, but can't trust my judgment now. I have to go back to bed and stay there. If only everyone and everything would just let me do that. Everything is so much work and thought. I think I can eat a yogurt a day, only I'll run out soon. *** Monday, 1-2 PM An hour or two later, after above post. I think I might just barely be able to say an outpatient if I get sleep for recovery, no alcohol, but with moderate vocodin, half a pill. This may have more to do with just the one (but strong) beer + (one non-extra strength) vicodin combination that I thought. I may be learning new eating habits to get me through this until the GI doctor deals with it. Helen in NY suggested they give me a gluten sensitivity test and one for porphyria, though regular non-EI doctors may not do both. I'm eating very very little and more slowly, and learning what bloats me and what doesn't. A carrot and spinach dip I've grown attached to lately are out (surprisingly... it must be healthy). time is needed to sort out what happened because of what. Sleep made a big difference. On the other hand, whether I end up in the ER tonight or not, if I knew a hospital could make accommodations for the light problem, my world would change utterly. If you manage to arrange anything today, it could be a miracle. Also, I meant to call to make sure for Wednesday's tests that people there would accomodate the light problem, so having the patient representative with me on that could help too, and in general for anything else that comes up. I need to shut off and rest so I won't make a call re anesthesia for the colonoscopy either-- I found out something earlier, they have it w/o preservatives, maybe w/o epenephrine, i forget, but have to deal with totally new people, not the nice guy I talked to by phone. ***** Samantha-- thanks. Adhesive heavy eye patches might work. That EI friend actually says she saw eye patches of some kind in an ER someplace. Light has to not seep in around edges at all though. My light sensitivity isn't an EI problem, or at least it looks that way. It makes the EI worse though and may have created it in the first place. More later.
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"You're better than normal! You're ABnormal!"-- Fry to Leela, who's self-conscious about her single eye, Futurama
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November 26, 2008, 04:12:48 PM
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Cancer is a big name illness. My might sensitivity is something I cannot supply evidence or proof for. But yes, in truth it is no different.
Colonoscopy and endoscopy done, went smoothly, I think they found nothing, so really I'm forced to deal with it on my own. It's crazy. I'll have to pump EI friends for ideas. I won't even deal with the report now and just go back to sleep for recovery. They must not have found the big evil lump of whatever I expected them to find in my stomach, rotting undigested food, backed up waste, or tumor... my diaphragm might have been chronically cramped from holding in gas pressure and left impression of sick painful mystery mass.
I expect severe constipation to just continue. Regular medicine kicked me out again.
Will comment on your new posts ASAP Samantha. Must sleep.
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"You're better than normal! You're ABnormal!"-- Fry to Leela, who's self-conscious about her single eye, Futurama
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November 26, 2008, 11:00:11 PM
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Jason don't worry about me today, feeling better, I'm sure you can relate to those really really awful breakdown moments. You say "think they found nothing" ? please let me know when you get the full report. Hoping you can get some rest/sleep. Im so happy to hear you finally got in to hospital. xxxx keep updated please Cancer is a big name illness. My might sensitivity is something I cannot supply evidence or proof for. But yes, in truth it is no different.
Colonoscopy and endoscopy done, went smoothly, I think they found nothing, so really I'm forced to deal with it on my own. It's crazy. I'll have to pump EI friends for ideas. I won't even deal with the report now and just go back to sleep for recovery. They must not have found the big evil lump of whatever I expected them to find in my stomach, rotting undigested food, backed up waste, or tumor... my diaphragm might have been chronically cramped from holding in gas pressure and left impression of sick painful mystery mass.
I expect severe constipation to just continue. Regular medicine kicked me out again.
Will comment on your new posts ASAP Samantha. Must sleep.
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November 27, 2008, 12:01:56 AM
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Funny, when I get good news like-- your stomach doesn't have a tumor, or a rotting lump of whatever, I feel betrayed. I have to convince myself over time that it's good news, if not extremely helpful. I file it mentally/emotionally with all the dr. dismissals over the years... but it's a good objective test.
The thing to deal with next will be how I have to change eating and other daily behavior when I can't. My situation ties my hands, and this time it's not a doctor being unreasonable but my GI tract, and it's harder to reason with than the worst and most irrational MD.
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"You're better than normal! You're ABnormal!"-- Fry to Leela, who's self-conscious about her single eye, Futurama
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November 28, 2008, 12:04:02 AM
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Someone just knocked on my door no doubt for some stupid reason and I'm up now. Some sleep. I have to start reinterpreting feelings based on test report, and I can imagine what I'm feeling now being a stomach wall abused by stretching from gas, and aspirin etc, bleeding somewhat, not extremely since no blood comes out of me.
Of course diet change helps, but that's a big area in which my hands are tied, by many factors, money, lack of transportation, need to avoid focusing so can't cook and must rely on food I can grab, most food being in plastic or drenched in PVC pipe water at vegetable section, and my being a non-meat-eater doesn't help.
I need info. on just which food produces gas and other things like bleeding. They told mre broccoli out of the blue at the test lab, that was totally against expectations for me. My brain chemistry damage necessitates alcohol to make up for it, and aspirin plus caffeine is the only abailable thing that works on pain, all three are out. No doctor will listen as far as providing alternatives, so soon it's back onto those three unless a miracle happens. No lectures from anyone on not doing that please, I'm scared to death about what I know will happen. This wouldn't have happened in the first place if it was avoidable. I knew the risks.
I can lower amounts of these things, and plan diet and other things a bit, if I have a lot more information, and that's a nightmare with the eye problem. I do a little "research" and in no time, I need an enormous amount of aspirin/caffeine right away.
A list of gas-producing food and which are okay could be a big step. GI lining irritants too.
Life is a full-time job of striggling to find ways of making every intolerable minute bearable from the moment I wake up, and every single thing I can do is now harnful... computer use, TV, being outside, eating, drinking. This is one big reason it was disastrous for me to be on my own with this. And people wondered why I didn't "just" leave my family for those 17 years, even when I had no money at all to live on, before Disability came through finally people still wondered. The world is absolutely insane.
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"You're better than normal! You're ABnormal!"-- Fry to Leela, who's self-conscious about her single eye, Futurama
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