MightyMouse

Depends on how I'm feeling, but I certainly don't take a shower every single day all the time... There are plenty of times when I have to skip a day b/c I feel so awful I just can't.

Same here, no fault for workers comp, but not no fault for the damage the other driver did to my car... which was substantial, hence I don't have my car back. If I weren't so gosh darned exhausted and brain fogged I could probably handle it better. Big sigh. Thanks for the words of support. I have a feeling this is going to take a while to straighten out, even after I'm feeling better, or at least hoping I'll be feeling better really soon.

So my GP told me I have a concussion--now that explains all that extra spinning, brain fog and near-faints. Also, I still have abdominal bruising and she thinks I also probably have some bruising to my esophagus and stomach, and it's aggravating my already existing reflux to new levels. I was up 2 nights ago until past 2 am with stomach pain from the dinner I ate around 6pm... started within a few minutes of my meal as if I had a ball of food stuck and it just didn't go away. Nothing like a concussion to make a POTSy/NCSy girl really *off kilter*. She wants me to take it easy and no strenuous activity at all... and no major life decisions until my thinking clears. I've decided that I will go back to work tomorrow; thankfully I have a training to go to for the morning so I wont be chasing kids around. If I'm feeling icky, I can always take a half day for the afternoon. Do have to teach tomorrow night though Normally, I could call in favors and ask for someone to teach for me, but all my folks who owe me favors are also teaching Weds nights. If I don't feel all better by Friday, onward to a CAT scan for my head... and perhaps some more testing for my poor ol' boo boo belly of bruises. All this stuff is a bit overwhelming; I have pages and pages of notes, worker's comp. stuff (I drive between schools and other locations for my job), my insurance, the other driver's insurance, the collision shop, the car rental place, oh, and my insurer subcontracts out their medical portion to a third party too... Keeping everything straight is tough. Oy. Nina

Oof! Sounds like you had a rough week. Sorry to say me too... but much less serious than what you've got going on. Goodness gracious. Maybe try a different hospital next time? If you can go and establish yourself as a patient at one of the downtown Philly hospitals, maybe even still Jeff, then maybe you'd get better treatment with anesthesia if you have staff there who already know you that your team can quickly consult with? Just a thought. Fortunately for me, my ER and inpatient experiences were pretty good, even if I've had 3 syncopal events today.

Hi again. I'm tired and sore, and my belly looks freakish with the giant bruise, but I'm hanging in there. Am much more tired than usual, more "spinny" and just plain "out if it" Potsy fog has surely set in ...and looks as though I may have developed a hernia just above my belly button Have a area that's red, bumped out more than the rest of the bruise and makes my belly button hurt when I bend, crouch, etc. Boogers. Have to see my GP on Tues and take it from there. Also, my perpetually slow guts are, well, in gridlock. You'd think between the liters and liters of fluid they gave me, the fluid I drank, plus fiber supplement, stool softener and glycolax, I'd actually be empty, but do dice. Sorry if TMI. Well wishes are much appreciated. Also, my apologies to anyone who had to wait a while for me to approve their forum privileges or for me to ship their t-shirt orders. I'm a bit overwhelmed right now. To add to the stress, some of you on facebook may have seen posts to/from my family about my nephew, who has been in Montreal General for a week now with a grade 4 kidney laceration, bruised liver and pneumothorax. He was up there with frat brothers and somehow got into some "roughousing" (um, maybe a fight???) and now my poor sister has been by his side sleeping in a chair ever since. Yesterday he had a very bad day, passing clots of blood through his catheter, which I'm told feels like passing kidney stones. Hopefully his youth will help him recover and get back home soon. So, I'd ask that rather than send your good thoughts my way, I'm doing fine, so divert them to Zachary who could really use them right now. With much love. Nina

I use fax b/c it leaves a permanent paper trail and it seems to get me a better response.

Hi guys, just a very quick note b/c I feel pretty awful--I am home. Many thanks for the well wishes. Still have a way to go... Have a huge abdominal wall bruise from hitting the steering wheel --being the small mouse, I sit pretty close to the wheel. The smoke from the airbag also burned my throat and lungs, making my asthma a bit tough. I am sore everywhere, nauseated, headachey, but I do have to say the staff listened to me, pumped me full of fluid when my heart rate wouldn't come down, and didn't freak out about my blood pressure going all over the place. Kudos to my medical team and the ambulance crew who were all awesome. I am blessed to have so many caring people in my life; Thank you.

Hi All: I wanted to update you Nina was in a car accident this morning. SHe was going through a green light when a dual pick up truck pulled out in front of her. As Nina hit the driver side her airbag deployed. Fortunately she only hurt her abdomen...with that being said we are waiting for more tests to be done to know if she is out of the woods and will not require surgery. I will do my best to keep you updated! For those of you on FaceBook I am much faster at answering questions there than here. Send good thoughts her way! Teri

I've been Omnaris for about 10 mos now and have no side effects. I have chronic sinus and ear infections. I also have a tube in my right ear b/c that one is the one that has had more problems. I had tubes in both ears about 5 years ago, but 2 years ago, they finally made their way out (that's normal). More than anything else, the tube and rinsing with a NeilMed system have been most useful. Before flying, I use an OTC nasal decongestant spray. It gives me a bit of tachy, but worth being out of pain

You can make your own for a lot less money. You can buy a tag and have it engraved with whatever you want. I have step by step instructions on my personal website here http://www.missmightymouse.com/ and then click on "make your own bracelet" on the top navigation bar

In addition to benedryl, my allergist has me take zantac too b/c it operates on the other histamine channel (benedryl address H1, and zantac and it's relatives address H2). Also, cool showers help. Might want to also consider using Sarna lotion, it's very soothing, very cooling and is just a hypoallergenic lotion w/ camphor and menthol. Hang in there. It sometimes takes me a week or more for the hives to go all the way AWAY. Wearing warm clothing or getting over excited gets them itching and red again. Nina

yep, no trouble. I knew as soon as I saw it that it wasn't from you, and I deleted it. I just figured you're computer had a virus. Sorry to hear it was a hacked hotmail account. I'm always telling people to use "strong" passwords--ones that are very tough to hack. I guess you learned that lesson, yes?

Happy Birthday -- and may this year be one of your best ever! Hugs, Nina

Dr. Grubb explicitly told me to take my 1 florinef tablet WITH my morning cup of coffee. Coffee has helped me all along and he saw no reason to start. Some doctors instantly jump to the "avoid caffeine" statement because of the erroneous assumption that b/c you sometimes get a fast heart rate that coffee would make it worse... actually, for many of us, stimulants help. For those who are sensitive, however, they may have to avoid it. I only take drink one cup of coffee--and sometimes I do have some green tea later in the day, but very infrequently. For most folks, anything in moderation is okay. You do deserve a plain language explanation about why.

That explains my exceptionally high IQ

Mine is a result of a genetic defect, and so it will never get better. I'm okay with that as long as I don't get too much worse--I've been able to hang in there with working for now.

Beta blockers make me feel drunk and sleepy.

you really are supposed to stop florinef in a tapering fashion, lowering the dose over a period of days/weeks until you're off of it--stopping it cold turkey can be harsh on your system, but I'm not sure if that's what's causing your symptoms now. Things like a cold or illness can set of increased symptoms in our group; also, you may need to adjust how you do your salt loading b/c you don't have the florinef to help your kidneys hold onto salt. Do compression stockings help you at all when you're feeling this way?

Hi Erika, if it were me, I'd have told the doctor he was misinformed, ask for a piece of paper and then on it, write "I am requesting my full and complete medical record", sign it, hand it to him and I'd finish it by saying "your duty of care is terminated" (duty of care is a legal term for medical professionals, who are obligated by law to give you a basic "standard of care"). It's a technical way of saying "you're fired." Onward. If you can't work, you can't work. That may change in the future, but right now, it is what it is. Find a doctor willing to work with you. Nina

How exciting for your son to be doing so well. I'm happy for him!

Keep in mind that a derivative means that it's chemical components originally came from an organic source--for those who took organic chemistry, the base, as you know, is always going to be carbon, with various other atoms associated. Even a small change in the chemical makeup can drastically change safety of a chemical for humans--for example the difference between Ethyl (ethanol) and Methyl alcohol (methanol)... one is safely consumable in moderation and the other is a potent poison if inhaled or ingested. The only difference between these two chemicals is that ethanol has 2 more hydrogen atoms attached to it than methanol. In the case of PEG, it's base is an "ether", in this case a "poly" ether, meaning multiple ether components: "Ether is a class of organic compounds that contain an ether group ? an oxygen atom connected to two alkyl or aryl groups ? of general formula R?O?R.[1] A typical example is the solvent and anesthetic diethyl ether, commonly referred to simply as "ether" (CH3-CH2-O-CH2-CH3). Ethers are common in organic chemistry and pervasive in biochemistry, as they are common linkages in carbohydrates and lignin." http://en.wikipedia.org/wiki/Ether ...and glycol belongs to the alcohol family of chemicals... and PEG is essentially an indigestible wax; your body cannot process it, so it's essentially passed through undigested. Less than 0.005 is absorbed which is an incredibly small amount. I works as a laxative b/c it tends to absorb water, which basically then adds some fluid to your bowels, helping to move things along. Because of this, your body may lose some fluid, and again, as stated a few times already, it can make you dehydrated if you don't take your normal POTsy precautions of eating enough salty stuff to counter any possible dehydration.

I don't take much of the miralax, but i do use it often and it's never given me any problems. I second the commentary that Polyethylene Glycol is completely different from antifreeze, as stated above. Please don't let the similarity in name confuse you--it's very different with regard to the chemical properties. With PEG, you have to be certain to stay well hydrated or that can really mess you up symptom-wise.

There's no evidence that more weight will make you feel better. I would follow the prevailing evidence that staying at a normal body weight is better for you long term b/c you're still at higher risk of things like diabetes, heart disease, cancer etc. if you weigh too much. It's important not to become "deconditioned" with this illness--that means trying not to lose whatever strength and aerobic capacity that you have b/c those things help us to better cope long term, if you can. Not everyone can do traditional exercise--like above, some much do so while lying down, and others really just can't. But... if you CAN exercise, you really should.

You can also do simple things, like hold onto a wall or rail or chair and do calf exercise like toe raises. I stand on my bottom step and also do heel drops.

Yes, this is true and there is research from several sources that indicate that squeezing certain muscle groups can help abort a faint by quickly pushing up blood from the lower body by squeezing. Quote from the "what helps" section of the main DINET site "Countermaneuvers can help to decrease symptoms by lessening the amount of blood that pools in one's legs. Useful countermaneuvers include: standing with your legs crossed, sitting in a low chair, sitting in the knee to chest position, leaning forward with your hands on your knees when sitting and tightening the buttocks, thigh and leg muscles when standing (particularly when standing for any length of time). Research shows that tensing the leg muscles while standing enhances brain blood flow and reduces sympathetic activity (van Lieshout Pott, Madsen, van Goudoever & Secher, 2001.) Squatting can also be a useful countermaneuver, although some patients report an increase in symptoms after squatting."