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Wheelie, I avoid Second Life. I am not good with words or communication. |
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i don't cope in social situations, i've never cried so much with loneliness and frustration as i have in the weeks since i went back to trying to be social online.. but i can't go back to being on my own in the real world and nothing else. My ex may live here but unless i need help, and/or she wants to shout at me, we dont spend any time in the same room. |
Wheelie, I am home too 24/7/365 unless I am at Church, or the doctors office or having labs run. I was used to mailing out prayer cards for those who were hurting or sick, or who's parents were grieving. I also was used to sending reading material from the Church to those who asked for it all out of my own pocket. The Church never paid for that. I did. But it was my joy to do so. Yep, I know about social isolation. That is the main reason I come online. That is why I hang onto my pets, and my outdoor activities like bird watching and feeding Hank and Honey. People may laugh at me, but they give me so much love and joy. I cry a lot too. I so know that feeling. Anyway, sorry for my long rant. Andrew |
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I have NO idea what Second Life is, but assume it is something along the lines of WOW? You get to be a character? My best advice to you is to keep on coming back and reading, posting, etc...socialize on small step at a time. I am ill and this is a big portion of my social network, being ill can be isolating. I don't know what I'd do without my community! Please don't disappear because I hate to think of you over there with nobody to talk to other than somebody yelling at you. Ack! Private message me if you ever need to just talk. :mobilewheelchair: |
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i didn't see any ranting, only saying how things are for you.. A lot of which i understand completely my guinea pig Sebastian is the one thing that probably keeps me sane in this world and he is my baby boy, he is the closest thing i will ever have to child but i think i would trust him more than a child any day.. he doesn't judge me when i'm struggling with things or my mental health has me all screwed up inside. When i came out of hospital after maor surgery last year one of the first things i did was hold him and i couldn't help but cry because he genuinely seemed to have missed me, he licked me so much i just felt so special even if it was only a furry little animal weighing not much more that 2.2lbs who thought so. i am so sorry people have hurt you! People hurt me too which is one of the reason i am not very social in real life, but weirdly it doesn't stop me from trying to connect to people. |
Wheelie, I will take a hug from you any day or night. Much thanks! :thumbsup: Yes, my animals are my life. I just adore them. I have a very deep bond with my pets. I cannot imagine life without them. I am just not myself of lately. |
does anyone else in here have kids or teens?
if so, do they try to walk all over you in regards to your different abledness? |
Hi Anderw n Wheelie I want u both to know that nither of u are alone in this world we live in even tho u are not as social as u wold like to be.I to understand the lonelyness that comes from being at home for what ever reason.As u may know im profoundy deff and many times my speach is sorta funky slow and not understandable.Over the years I have just delt with it by keeping my friendship group to the ppl that count,not ppl who make me feel bad or dont understand how being difrently abled is to deal with.I also have two fur kids who are my best friends who go most every where I go,yes I talk to them too and in there own way talk to me ..fur kids talk u just got to know how to listen.
For a while after my accident I went from haveing friends who were at my place every day,we did a lot of hanging out hear and there,went places and so on.After the accident....well most of them just droped of the face of the earth...and really that is ok cause if they dont want to hang with me cause now in a bit slower than before and need to becarefull in somethings I do,I really dont need theire bs.I figure its there loss not mine.One thing I do for myself is get out of the house even if its only in the yard doing something possitive.Wheelie if u have any kind of case worker or a way to find a suport group to get to know give it a try,there are programs that have buses to pick u up and take u to what ever they have planed,even can get u a medical aid to help if u need one. Both of u can feel free to pm me anytime and I will anser. |
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When he was a toddler/pre-schooler and we would watch tv together, he would hold my left hand and rub it against his face and talk to it. He called it "yittle hand" (little hand) i always thought it was sweet. Are you having any kid issues, SF? |
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for the most part my kids are really good, but sometimes they can work my brain injury in their favor. it makes me insane. truthfully it makes me insane because i am never sure who is right. i can swear i said be home at midnite and the teen will stare at me defiantly and swear i didn't give a time. mostly, i write important things down, but sometimes it is crazy making. the good news is that 98% of the time they are super protective of me. it's been a long road to that point. |
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Tony would do that to me too....i think that's a teen thing in general, seeing how much they can get over on us. i finally started writing his curfews down on the dry erase board in the kitchen, and made sure he knew he was responsible for looking at it on the way out the door, that way he had to stop using the, "i didn't know what time curfew was" excuse. Also taught him that the ignorance defense in general wasn't gonna fly. He is also protective of me. When we're out and i'm navigating steps or rough terrain, he walks slightly ahead and keeps an eye on me. It makes me so proud of him. In general, teens really are as bad as all the cliches about them. |
Rockinonahigh, i did try going to a couple of day centers, to get a break from being in my flat and stuff, but they were full of old people who slept most of the day and i would be the only person awake under 60 who didn't have severe comunication snd/or educational issues, so there was no benefit to me being there, at least at home i have access to the internet!
if you ever wanna chat i'm online most of the time :D |
Wheelie,have u tryed the senior citizens centers in your area//Ours hear has bingo,party nights,a really good lunch for $3.00 as well as a fue other things going on.Chek them out.
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Hi everyone. Many of you who are from B-F know me as Miami Butch, but I thought I'd shorten it to Miami here. Anyway, I have been in and out of a wheelchair for many years now due to a motorcycle accident, arthritis in both knees, Spina Bifida and a myriad of other reasons. I'm ok with being a gimp. And I can call myself by that particular term all I want, after all, it's ME I'm talking about, not anyone else. There are certain perks that come with having a body that is otherly abled. Like, I get to go first in line at Disney, and I can park practically inside the gates, thanks to that wonderful invention the handicapped sticker, and I don't have to pay at a meter, as long as my handicapped plaque is displayed. The downside is that there are a LOT of places that are a royal pain in the rump to get into and out of, because they're not ADA compatible. Ever try to open a door while trying to keep your wheelchair from rolling into the street because the incline is so bad?? NOT pretty. lol
I'm ok with myself, and that's the most important thing. The thing that really ticks me off is when ppl assume that there's something wrong with my BRAIN just because my legs don't work very well. I hate when ppl condescend to me, and try to speak in simple phrases, as if I have a monosyllabalic vocabulary... You can imagine the surprised looks that I get when I not only answer in an intelligent and cohesive manner, but often, just to mess with the person's head, I'll even throw out a plethora of words which sometimes THEY don't understand... All the while laughing my ass off inside. Petty, isn't it? But sometimes, ppl need to be shamed into treating you as an EQUAL instead of as someone who is LESS. |
Im currently working the details on " officially" making my ferrets into " service animals", they would be of enormous Help letting me know or be aware of nearby activity(i'm profoundly deaf*reminder*) and during the holidays, they can help me with calming down in places like wal mart, the crowds literally make my bp shoot up high , if i lose my familys location i realized my temper is lightning quick(borderline personality*reminder*) & i will feel intense confusion, dizzines with added bonus of occasional passing out, walmart hates when that happens , i'm a lawsuit waiting to happen i guess.... So, yeah, certify them , get i.d's for them and make sure i wont have to recite ADA..:candle:.:mohawk:
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... kids ..
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Me, well, I tend to give them the benefit of the doubt. That's why we have such a great sense of balance in our home. THAT is an awesome gift to give our children. I'm soooo happy you are such a GREAT Mommy. |
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Damn skippy I am. I can always count on you to make me feel like I am a good Mommy. Even when I'm not because I want to murder little people. |
Where I lived on the MS/TN line, my job went down to p/t and after trying to find something else to supplement my income, I gave in and found a job and moved back to my mothers in Alabama. At first I looked at it as if it was a sign from God that I needed to be back where I said I would NEVER live again, to help my mother take care of my grandmother with Alzheimers. What I didn't know is that 1 1/2 months after being here my mother would have to take care of me.
I have always been a healthy, adrenaline junkie that LOVED stress, workaholic to I can't make plans with anyone because I don't know from day to day how I am going to feel. At first, my symptoms was MAJOR chronic fatigue and then things progressed. Long story short as I do not want to bore anyone, they are pretty sure it's Lupus. I have seen some good Dr's here and some BAD ones. I actually had one to tell me that it was Fibro/Chronic Fatigue because he just didn't know what else it could be. I have , in the past, tested positive for Lupus but had other things going on at the time and dismissed the findings. This time I can't. Because of emotional stress, I found myself with a week long stay in the hospital 2 weeks ago. I am TRYING to adjust myself with this new life and think of it as some kind of blessing. So far I am not liking it too much :( Does anyone else on the site have Lupus? And btw...I am loving reading everyone's stories :) |
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THANK YOU for that! p.s. Thanks for helping me wash the skunk smell off the Dark Horse this morning. :clap: |
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I can't smell the skunk,, but it feels dirty still. Gross. Gross. Gross. |
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Our conconction worked WAAAAAAAY better for faaar less $$$$ ... oh and yes it's gross (the smell) |
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Kids
I don't have kids, but have nieces and nephews. I also have kids in my neighborhood. My nieces and nephews and great nieces and nephews cover all age ranges from newborns all the way up to mid-30's. They all know that I am different. It is very obvious for them. Let me give a good example. I went to dinner and was wearing black khaki pants with a navy belt. I thought it was black. I struggle with reading to them if they ask me for help with homework. It breaks my heart. Math is nothing short of hell. I point them to someone else for help. And my gosh, kindergardeners are being given computer classes. I can barely get on here. And these kids today have the knowledge and computer savvy - it blows my mind. :| Now mind you, I can teach them how to swim, throw a football spiral spin, throw a curve ball, talk sports, smoke cigars & pipes, and all about boating. I love kids, but am very grateful that I don't have any of my own. The support of 1 person is the difference between being 6 feet in a hole vs alive for me. |
Two points!
I have a number of autoimmune disorders. The most visible ones are MS and the damage caused to my eyes by MS. With the MS, I generally walk with a forearm cane, sometimes two if I'm in a flare. The one I use the most is decorated with flowers and butterflies and the Human Equality sign. When I'm in a store that has them, I use a motorized scooter to keep from getting utterly fatigued. Also when I'm out in the sunlight and/or a store, I wear a black patch over my right eye. If I don't, I get literally blinding pain in both eyes and a severe migraine. I'd like to get a nicely lined pink patch with lace!*smile*
People around here are known for their friendliness. But when I go out,say, grocery shopping for instance, I get DOUBLE points-one for being crippled and another for being half-blind!Amazing how friendly people turn out to be then! They TALK to me-gasp!-they offer to get things from the high shelves. They even offer to help my friend who drove me to the store carry the groceries to the car!I'm not meaning to make light of what being disabled is like. But I do try to find humour in my situation when I can. That makes bearing it much easier. Later I'll write a post on what my diseases have taught me. This doesn't mean that I WANT to have them, or that I don't sometimes scream in frustration over my limitations now. But I HAVE learned lessons from them that I might nit have learned otherwise. But that's a different post. Lady_Wu |
I wish I was in Chicago. I just learned that they have a "Disability Pride Parade" and Eli Clare is the Grand Marshal this year. The parade will be Saturday, July 24th in downtown Chicago.
I am copying their mission statement, because it made my heart swell up big. http://www.disabilityprideparade.org/home.php Our Mission The overall mission of the Disability Pride Parade is:
At the request of Sage Publications, Sarah Triano wrote the following definition of "Disability Pride" for the Encyclopedia of Disability: " 'Disability Pride represents a rejection of the notion that our physical, sensory, mental, and cognitive differences from the non-disabled standard are wrong or bad in any way, and is a statement of our self-acceptance, dignity and pride. It is a public expression of our belief that our disabilities are a natural part of human diversity, a celebration of our heritage and culture, and a validation of our experience. Disability Pride is an integral part of movement building, and a direct challenge to systemic ableism and stigmatizing definitions of disability. It is a militant act of self-definition, a purposive valuing of that which is socially devalued, and an attempt to untangle ourselves from the complex matrix of negative beliefs, attitudes, and feelings that grow from the dominant group's assumption that there is something inherently wrong with our disabilities and identity.'"Dr. Martin Luther King, Jr. once wrote, "One must not overlook the positive value in calling the Negro to a new sense of manhood, to a deep feeling of racial pride and to an audacious appreciation of his heritage. The Negro must be grasped by a new realization of his dignity and worth. He must stand up amid a system that still oppresses him and develop an unassailable and majestic sense of his own value. He must no longer be ashamed of being black." Although there are many barriers facing people with disabilities today, one of the single greatest obstacles we face as a community is our own sense of inferiority, internalized oppression and shame. The sense of shame associated with having a disability has, indeed, reached epidemic proportions. Disability rights movements in different countries have made many gains in the area of civil rights over the past decade, but what good is an Americans with Disabilities Act or a Disability Discrimination Act if people will not exercise their rights under these laws because they are too ashamed to identify as being disabled? "As long as the mind is enslaved," King wrote, "the body can never be free." As long as people with disabilities remain ashamed of who we are, we will never realize the true equality and freedom we so desire. We must first take pride in ourselves as a community. We must no longer be ashamed of being disabled. "Dismantling centuries of internalized oppression, however, and promoting a widespread sense of Disability pride is easier said than done. Unlike other civil rights movements, people with disabilities do not always have the benefit of a generational transfer of disability history and pride through the family structure. There are no "disability churches" per se, neighborhood enclaves, or other communal institutions where people with disabilities can come together by choice and consistently receive positive messages that counteract the depredation wrought by the onslaught of cultural terrorism. There is a tremendous need to create a counterculture that teaches new values and beliefs, and acknowledges the dignity and worth of all human beings. Disability pride is a direct response to this need." Sarah Triano, National Disabled Students Union "Today marks the beginning of our efforts to develop a whole community of people with disabilities and allies who are proud to be who we are, who do not see ourselves as victims, who expect more from ourselves and those within our community, and who are committed to building an inclusive community that recognizes the dignity, humanity, and worth of all people. We must put our efforts into transforming the hearts, minds, and souls of our people, for that is where our true power lies. As the great leader of our movement, Ed Roberts, once said, "My ability to regain the pride in myself as a person with a disability is one of the most important things that's coming out of what's happening here today." Whether or not Ed Roberts and his comrades successfully won regulations for Section 504, they left that important fight in our history with a new sense of pride in who they were - and that is their legacy and our heritage…. a heritage which I cherish and celebrate fully. I am Disabled and Proud!" - Sarah Triano |
Freak flag flyin' high... (and forgive me, this may be long...)
Most predominant is my laundry list of "mental" illness, with bipolar being at the top of that list. I do have bouts of depression, but luckily, I generally experience a level of hypomania on a day to day basis. For those that don't know, it pretty much means that I am one of the most perky, chipper, energetic folks you will meet. Yeah, I might get sad or angry but because of the mania, it usually disappears within moments. Also, things that anger or hurt others usually just bounces right off me, like that whole "water-off-a-duck's-back" kinda thing. To me, that's a blessing. It means I'm almost always happy, optimistic, and smiling like a darn fool! lol :D Anyone who knows me knows I like being unique, so even my illnesses are unique. lol I suffer from a rare form of migraines called hemiplegic migraines. I spent months going in and out of the hospital, and a huge battery of testing had to be done to diagnose this condition. The reason for that is because this form of migraine can be easily misdiagnosed as stroke or epilepsy. It starts out with confusion. My brain doesn't seem to function and I can't form words or sentences. It sounds like I'm babbling. I have prolonged aura at onset, which means I see little sparkly stars and circles as a "warning" that the migraine is going to come. The aura can last anywhere from a few minutes up to a few days before the actual pain ever comes. The aura is so strong, that it overpowers my vision. Next comes the ringing in my ears, which then leads to me going "deaf" for the remainder of the attack. (The ringing goes away, and I am left with just a dull "deadness". I can't hear anything at all.) Next comes the numbness. The entire left side of my body goes numb. Sometimes one limb at a time, sometimes all at once. I'm pretty much temporarily paralyzed on that side. Along with the "paralysis", my tongue and throat swells. I can't speak, can't swallow, and sometimes feels as though I am choking. All of these symptoms are just the "warning signs" before the pain hits. And by gosh, it is some of the worst pain I've ever felt in my life. I lay in the cool darkness with a cold rag on my head, sobbing and rocking, feeling like someone has stuck an axepick in my head. It's horrible! The after-affects aren't good either. Once the pain subsides it takes a while to get my sight and feeling back. I'm usually very weak and end up sleeping for hours. It takes quite a while to be coherent again, and wreaks havoc on my memory. When I was first diagnosed, I was around 19 with a young child. Because these damn things hit so often and so unexpectedly, the doctors would not allow me to drive or even be alone, for over a year. Luckily, as I get older the episodes get fewer. They still do their damage though, and have pretty much eaten away at my memory capacity. :( I can't really find a blessing in this, although I have tried...lol Another weird thing...my heart didn't grow when I was a child. Supposedly your heart grows as you grow, but according to my cardiologist, mine is still the size of about a 3-4 year old's. I'm not supposed to do anything to overly strenuous or lift anything too extremely heavy. But I also shouldn't be overweight and shouldn't smoke, but hey...ya know... Oh, and I was just put on diabetic pills last year, because my bipolar pills finally pushed me over that "borderline" sugar level... yay me! lol It's all good. I like being unique and different. I consider my whole life "outside the box"... (My dad lovingly calls me Abby Normal...lol) Plus, it helps me relate and understand a little of what others go through... :) |
Oh yeah, the migraines are caused by a familial mutation on specific genes in chromosomes 1-19 (gettin' all textbook on ya...lol)
To me, that's just so cool. OMG! There is my silver-lining with this illness! I'm a mutant! Not quite as cool as a Ninja Turtle or an XMen character, but cool nonetheless... yeah... :D |
I'm having some issues these last few days, took some meds to try to sleep and now my mind is giving me fits. I can't sleep, but when I do I can't wake up...fibro fog for sure, but damnitalltohell it's 6PM and I want to be awake. Ugh
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so my doctor gave me some sleeping aids. the first one? ambien? i totally freaked out, and my kids had to call cal over for help. i was apparently being ridiculous. know what? i do not remember a thing. needless to say, those meds went in the trash. next it was lunesta. same thing. trash. i gave up on meds for a while, scared of having these "fugue" states where i act like a nut and everyone remembers it but me. recently, in the hospital they gave me trazedone. which basically equates to a large dose of benadryl. it works, but i find it so hard to wake up...and my head is super foggy. so i only use when i am breaking down due to exhaustion. the rest of the time i take herbal sleep aids. so yes. i feel for you corkey and can so relate. here is some info on herbal/natural sleep remedies. Nutritional supplements: 5-HTP, Melatonin Best herbal remedies: Valerian, Corydalis, Lavender Other remedies: Chamomile, Passion Flower and hops Also look at: homeopathic remedies, they are safe also for children Dr Deepak Choprasuggests the following Ayurvedic remedies: a cup of warm milk with two strands of saffron or some grated nutmeg |
I've been like that all day. I just can't seem to process what anyone is saying unless it's very clear and straight forward. I'm not in full blown fog yet, just that little haze that floats along the ground and makes it hard to think.
I blame summer. I've heard from a lot of people today that are foggy and flaring. |
Thanks SF and gayla, I know I'm not alone in this. The valerian I have, but because the issue I'm having is my gut, it's best not to take that till my gut clears up. When ever that happens I won't have to take the meds. Then I'll be back to my jovial self. Til then I'm in a bit of a funk. I need to get on the tread mill and move, I just have no energy. Me venting...not much I can do about it, just wait it out.
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I'm SAB, 31...I was born with hydrocephalus (water on the brain), a preemie two months early (and two pounds 12 oz) and was first shunted at two months old. I've had 20+ shunt revisions, and am currently going through what I believe to be a malfunction (a major reason to have the revision)
I also have major depressive disorder, and anxiety issues although the anxiety has lessened over the years. I'm on disability. Just wanted to introduce myself.:koolaid: ~SAB |
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I had a shunt for around 1 1/2 years after a brain injury. I had a lot of stomach problems during that time. :( What is the malfunction you have with yours? Is a revision a rough thing? I am super curious... |
Did I ever do the intro thing?
OMG Ambien. It was the first thing my doc gave me for sleep and it's the freakiest stuff. The first few nights I took it as I was laying down but then it took about 20 minutes to kick in so I started taking it about 20 minutes before I actually went to bed. I didn't do weird stuff, but all of the inanimate objects in my house did! I have a shelf of elephants (that I've been collecting all my life) they started dancing in unison. My shoes were moving around. At one point my desk stopped being solid and I could put my hand through it. I was kinda cool but then one night the walls started closing in on me, literally the ceiling was about a foot above my face when I layed down, I haven't taken any sense. I tried Trazadone and it seemed to work well but the light sensitivity the next day made it really hard. Now that I don't have to do the 9-5 thing, I've switched back around to what feels more normal to me and I think I sleep better. Usually that means I fall asleep between 2 and 3 a.m. and get up between 10 and 11 a.m. Out of that I think I get a good 5-6 hours of deep sleep. We dug out the treadmill a few weeks ago and I notice I do sleep better on the days I actually use it. I find 10-15 minutes reduces the flare risk and helps me sleep ok but I have to do it earlier in the day, not in the evenings. |
oh my gay.
thank you for sharing your ambien dancing elephants here. i was truly wondering if i was the only one who went batshit on the stuff. |
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A neurosurgeon I had in Alaska put the cause of a malfunction this way: The top layer of your brain flakes off like skin. Often, it is this material that clogs the shunt tubing leaving it unable to drain the CSF (brain fluid) it is supposed to. When I was growing up, it was either this reason or that I needed more tubing due to growing. Of course that stopped a long time ago. ;) He also told me that some patients have more malfunctions than others. I think I fall into that category. Anyway. A revision is pretty much brain surgery and I *do* have a lot of scar tissue around my head and stomach but it is a relatively easy surgery, they just knock me out and after unclogging it put new tubing in. As I've gotten older it takes more out of me, but I am used to it. I have to reschedule a CT scan that I am supposed to be having this week of my stomach end of the shunt, after that I will make another appointment with my current neuro. He told daisy and I that he doesn't want to do a revision every time he has a patient with a shunt complain of the symptoms (headache, mood changes, either sleeping too much or too little, vomiting, nausea, loss of appetite..) but that he knows that often CT scans don't show anything wrong (which is every single time, with me) Until then I take Vicodin to dull the pain. I've had the symptoms since late May early June, so I hope something happens soon. I know my mom back in Alaska is worried, along with daisy and daisy's mom. Well enough about me. I just wanna say that I am loving reading everyone's stories...sometimes it helps to know that you are not alone. ~SAB |
ok i have an ambien story too....
Like someone else said, i started taking it about 1/2 hour before i was ready for bed to give it time to kick in. Well, one morning my house mate asked if i had heard the smoke alarm go off during the night. Nope, i said, and didn't think anything more about it. Later as i was sitting at the computer, i noticed a big jar candle sitting on the floor in the corner of the room. i wondered why it was there and went over to get it. It was covered with black soot and had water in it, as well as bits of burnt paper. i sat there trying to figure out what was going on, and slowly memories started coming back....i remembered sitting at my desk, lighting the candle and holding paper over it. That's all i remembered. i almost set the house on fire on ambien! Yeah, it got trashed quickly. A friend eats in his sleep when he takes it....wakes up with food wrappers and crumbs all over the bed but with no memory of doing it. my doc switched me to amitriptyline (elavil) for insomnia, which works ok usually with no hangover effect. It's old as dirt and very cheap. |
So apparently my two day low hanging fog is mostly just due to allergies. :/
Had a post-surgical follow up with my ENT today and he walked in the door, took one look at me and said, "Happy Allergy Week!" When I told him I'd been foggy for a couple of day, in addition to the razor blades in my eyes and the runny nose, he told me grass pollen is really high and if my allergy is severe enough it can affect everything from concentration to cognitive kind of stuff. Yay. He did call in scripts though and said I should be thinking more clearly in a day or two. (clearly? clearer? sigh) I rarely like my docs much less love them as much as I love this guy. He just takes care of stuff without me having to beg and explain over and over again. Then again, he is the one who saved my butt when surgery went all wrong so I guess it's not all that weird to be madly in love with a doc who's probably the sole reason I'm still upright. So, for all the foggy folks, check your pollen levels! :) |
Poor Gayla, if I had allergies to trees and grasses I would do as you and down some pills. I hope they help you very soon. My allergies are to foods, yea I eat stuff I really shouldn't but I got tired of bland. I can honestly say it's the fibro fog.
Have you tried an ice pack for your eyes in the meantime? |
Yeah, I did ice for a bit this morning and it helped but then had to go out in the world and all. He called in some drops and Flonase, I think. That should help.
It was just weird talking to him because I know I've been having issues the past couple of days with allergies but I really never made the connection. I mean, I have thyroid fog and I have fibro fog and I can usually tell the difference between them. It never crossed my mind that now I have hayfever fog to go along with both of those! |
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