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Old 06-26-2003, 02:34 PM   #1
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Post ptosis with marcus gunn jaw wink

hi, just wondering if anyone else has this condition.

I'm 25 and have had 3 surgeries on my left eyelid to correct (still not perfect, but I've come to accept it)... I can somewhat control the jawwink now, so I'm glad of that.

 
Old 07-25-2003, 08:19 AM   #2
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My daughter was diagnosed with Marcus Gunn and I'd love to know how you learned to control the "jaw wink."

Thanks.

 
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Old 07-27-2003, 07:32 PM   #3
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I just realized what happened when my mouth opened really wide; or when I chewed on one side of my mouth, so I stopped.

If I yawn, I shut my eyes, I chew on my right side, and I'm conscious of what I say, and my facial expressions. Because I have Ptosis, on top of the marcus gunn, when my eye lid opens wide up, it goes way higher than it normally is.

Best of luck to you and your daughter. Feel free to ask me any qustions that you may have.

 
Old 07-20-2004, 06:25 PM   #4
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Re: ptosis with marcus gunn jaw wink

Hi. I have marcus-gunn and have always wanted to "meet" someone else with it, if for no other reason than I've never met with or talked with anyone else who has the condition. Can we chat?

 
Old 07-21-2004, 06:17 PM   #5
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Re: ptosis with marcus gunn jaw wink

Sure, I don't know anyone else with it either. What's your age? Any surgeries?

 
Old 07-22-2004, 10:30 PM   #6
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Re: ptosis with marcus gunn jaw wink

I'm 48, and had a series of operations in my late teens and twenties. I heard recently that there were about 5,000 people with our condition, and I always hoped to meet another, but never came across anyone else who's even heard of it, let alone had it or knew of anyone else with it. I always thought that would have helped in my earlier days of adjusting to being a little different if it were more well known.

Last edited by NancyK; 07-22-2004 at 10:32 PM.

 
Old 07-24-2004, 09:46 AM   #7
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Re: ptosis with marcus gunn jaw wink

Yeah, I definitely have never met anyone else with marcus gunn. I still deal with a little self esteem issues but - what can ya do??? I think that I've accepted myself and feel better about myself than I did in the past.

I was made fun of in school, so that's what started my issues.

But now I'm almost 27, have a great relationship and don't care so much what other people think anymore. I still have a slight ptosis and the marcus gunn, but there is nothign I can do about it.

I was told that the only way to fix the marcus gunn was to do some really delicate surgery with my nerves throughout my face and my jaw and it just wasn't worth the risk to me. The marcus gunn doesn't bother me as much as the ptosis does.

 
Old 07-27-2004, 01:49 PM   #8
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Re: ptosis with marcus gunn jaw wink

Quote:
Originally Posted by knut
Yeah, I definitely have never met anyone else with marcus gunn. I still deal with a little self esteem issues but - what can ya do??? I think that I've accepted myself and feel better about myself than I did in the past.

I was made fun of in school, so that's what started my issues.

But now I'm almost 27, have a great relationship and don't care so much what other people think anymore. I still have a slight ptosis and the marcus gunn, but there is nothign I can do about it.

I was told that the only way to fix the marcus gunn was to do some really delicate surgery with my nerves throughout my face and my jaw and it just wasn't worth the risk to me. The marcus gunn doesn't bother me as much as the ptosis does.
Yeah, I know exactly what you mean, both about being more comfortable socially, and about the physical pain in the *** of a ptosis (getting in the way of better vision and also appearance-wise). As far as appearances go, once the newness wears off, most people tell me they completely don't notice it. That said, I, too, have had my self-esteem issues with it, I can't deny that, (and who wouldn't!) but for the most part, have decided to be fabulous nonetheless! By the way, I'm currently married, (although divorcing next year, which has nothing to do with this), and have had many nice, longterm relationships, so it surely doesn't affect one's lovelife or ability to love others - you know, the important, good stuff of life. These days, I only get down about it, on average, once a year; so I wallow for a day, cry to my shrink, and it's all over with!

As far as surgeries go, I keep up regularly with the top surgeons in New York City (where I live) and I can tell you they can't cut that nerve - it's a brain stem thing. I'm curious which doctor suggested otherwise?

If you'd prefer to correspond just through [ removed ] let me know if I've disabled that function, and I'll find a way to enable it.

Nancy

Last edited by moderator2; 07-28-2004 at 07:38 AM. Reason: Use this board anonymously, only - no emails.

 
Old 08-03-2004, 02:32 PM   #9
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Re: ptosis with marcus gunn jaw wink

Hi Nancy Ė Sorry that it took me a while to write back. I normally get on here during my down time at work and lately I havenít had much of that.

Yeah, most people tell me that they donít notice it either, but Iím sure that itís just them being nice. Of course, people are more self conscious about their own problems, but itís definitely the first thing that I see in the mirror Ė just about every time that I look. The top of my lid that has ptosis goes to about the top of the black part of my pupil. The other eye, is of course, higher. I can control it to a degree, but I canít do it all the time. Most of the time for pictures or when Iím meeting someone, I try and make sure my eyes are even Ė but I donít worry about it too much anymore. I am who I amÖ., canít change it so thereís no point driving myself crazy over it.

Although I feel like Iím a wonderful person that should have no problem finding someone to love me Ė I definitely consider myself lucky to have found my long-term boyfriend. He has been the one to teach me that people arenít all about their appearances, and that I get caught up too much in how I look. ((I also am dealing with persistant adult acne, which is hell within itself and definitely puts a hardship on my self esteem at times).

Honestly, the thing about the surgery with the cutting the nerve may just have been something that I overheard while I was in the surgeons office with my mom at some point and time. I must have been young, because I donít remember any detailsÖ.. I just remember getting the impression that while the ptosis could possibly be improved with surgery, the marcus gunn problem couldnít. Like I said earlier, I have pretty much learned to control it. I just try and keep my jaw still, and when I yawn or have to open my mouth I try to keep my eyes closed. Of course, I always canítÖ., but thatís ok. It was much, much worse as a child. I didnít know when it was happening and it definitely got peopleís attention. Attention that I grew to hate. And of course kids made fun of me for both the ptosis and the marcus gunn, but mainly the ptosis.

Ya know another thing that is interesting Ė my eyes are different colors too. One is a hazel color and the other is blue. The one with ptosis is blue. Iím wondering if itís because babies are born with blue eyes and maybe that eye was closed and didnít developÖ..( I honestly have no clue). But, that being said Ė I see better out of the eye with ptosis that I do with the other eye. Maybe because of all of the years of over compensating Ö. Who knows. I do wear glasses, have for about 10 years.

[ removed ]

It is nice knowing that there are other people with this and Iím not totally the oddballÖ

Last edited by moderator2; 08-03-2004 at 05:37 PM. Reason: report posts that violate the rules, do not reply.

 
Old 08-04-2004, 02:35 PM   #10
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Re: ptosis with marcus gunn jaw wink

Hi Knut,

Thanks so much for writing again, it means a lot to me to have a 'pen pal' with this special connection (truly a first for me, and it's great!) As I'm new to these chat forum boards, I see they are editing out (removing) text, names and email addresses, so I guess we'll be chatting publicly - but still I'm very grateful for the opportunity. If it's okay with the board and you, by what first name should I refer to you, or is Knut your preference?

Again, wow, can I relate to everything you said..I stopped trying to control the wink (for the most part) altogether, but, yeah, in public, I admit it crosses my mind quite regularly to be honest. I was in a department store the other day, and bought a Snapple, and it raced through my mind that I'd be tilting my head back and opening my jaw, exposing a lot of white upper eyeball (my ptosis lid is cut off quite a bit, but still is about where yours is when my jaw isn't moving it) anyway, it occurred to me that these strangers would be getting an eyeful (excuse the pun) but I quickly said to myself, well sc__w it, and I happily drank my tea, and no one gave me the slightest attention. That's a great thing about New York, too, nothing phases anyone...probably why I live here. ha!

Interesting about your eye colors. Mine are blue. (a medium dark brown eye shadow seems to be very flattering for our coloring as well as reducing the noticability of our ptosises, have you noticed?). As for the whole vanity issue, luckily it does get less important as one ages, probably because the wrinkles and sagging force one's attention to focus on career, hobbies, family, pets, ANYTHING other than what's going on in the mirror. It's also been my experience that men find a ptosis kind of sexy (like Derek Jeter's bedroom eyes), so as we look at the assymmetricalness of it all and wish for symmetry, perhaps we are overlooking a small asset here. I've also had a small sticker next to my bathroom mirror for the past 20 years that says "Grin and Ignore It", which, I gotta tell you, has helped me through many a tough moment.

Is it okay to ask what general part of the country you live in? I so wish to meet someone like us in person, say for coffee at an outdoor cafe with family or friends present, but I realize that this probably is not appropriate to suggest here, so I'll reluctantly drop the idea. It's just that it would be such a validation to one day see someone like myself. I can't tell you how many doctors here say they have several patients like me, but confidentiality prohibits them from hooking us up. Rats! I, of course, said to them you have my permission to pass out my phone number to anyone who might wish similarly, but other than camping out on their office doorsteps (which I would never do!) there's probably no chance that an introduction will be brokered. Alas. Ironically, if you want to get a nose job, there are tons of doctors who will hook you up with former patients so they can show off their work...it's a world gone mad.

Anyway, I could go on and on, but I'll just say so long for now, and look forward to whenever time and circumstances might allow you to check in.

Nancy

 
Old 08-05-2004, 01:22 PM   #11
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Re: ptosis with marcus gunn jaw wink

Hi Nancy,

Yeah, Healthboards wonít allow any emails, so this will be the place I suppose.

I actually forget about the eye deal sometimes until I catch someone look at me, and I can just tell that they are looking right at that eye (my left one, by the way).

I donít really use eye makeup much. Itís actually kinda funny because I stopped using eye shadows when I was a teenager because I just felt as if they emphasized my eyes more Ė and I felt like the more I did to keep people from looking at my eyes, the better. Now, I end up just putting a little bit of my blush on my eyebrow bones to give myself some color (Iím pretty fair skinned) and I put a little bit of mascara only on the eye with ptosis. For whatever reason Ė the eyelashes on that eye donít curl up like my other one and I have to coat them black to make the eyelashes match as well as I can.

Ha, good way to look on vanity, etc. I am getting there Ė trying to anyway. Iíve at least realized that there are other things that are way more important that I can focus on and when I start dwelling on it too much, I try and bring myself back to reality and tell myself that Iím being ridiculous, because at least I can see, hear, walk, etc. Ö. Still gotta get myself one of those stickers though

I live in Minnesota. I used to live in Virginia, but I moved out here with my boyfriend about four years ago. Iíd like to see someone else with this also Ė and compare life experiences. I know what you mean about the doctors. Have you done any other looking to see if there are support groups or other chat rooms for eye problems and such? Maybe those places allow contact information. I have only been on Healthboards.

Anyways, my free time varies and so sometimes Iím online all the time, other times itís not as often. Not that I really have anything going on that prohibits me from getting on at home Ė not like I have kids or anything. Just like to prop my feet up when I get home, have a drink, and relax. Try to leave my worries behind (most of the time it takes more than one drink ). Anyway, write back when you like and I will always respond Ė provided your posts arenít deleted by the time I get here!!

Last edited by knut; 08-06-2004 at 06:06 AM.

 
Old 08-06-2004, 06:16 PM   #12
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Re: ptosis with marcus gunn jaw wink

Hi Jackie!

Great to hear from you! [ removed ] You are the first adult I've ever encountered, and as treasured to me as the Holy Grail!

By all means, if you find any of "our friends" on other forums, please don't hesitate to let me know, or join in here. Right?

I find that there is SO MUCH to discuss/commiserate/laugh about...

Anyway, are you keeping your eyes lubricated? In addition to my blink being short and irregular, my MSJW eyelid doesn't close when I sleep, so I use lubricant every night, and am finding the new eye drops (in gel form) to be useful in the daytime. I'm also on the computer all the time (for work) so I'm not blinking as often for that reason, too. I wasn't told about the necessity of using eye drops for a really long time, so I'm mentioning it to you just to make sure you know. (Your vision and cornea can deteriorate without adequate tear film).

You mentioned the lack of eyelash curl - mine, too! But mine stems from sleeping with my open eye buried in a pillow at night, I think, but now that you mention it, who knows if it wasn't always that way(?). If I'm in the mood to fuss, I'll use an eyelash curler. I, too, am fair-skinned, but I've always been fond of dark, (sophisticated) eye makeup.

As for "the stares", I think it's only natural to look at something unique, so I give folks a lot of slack when it happens to me. If I see something unusual, (read: unique, intriguing, interesting, beautiful) I'll discreetly check it out for just a moment - looking with "kind eyes" (meaning, not judging or mean-spirited, just human and curious, and most often, full of admiration at how well some person has adapted to their special need or circumstance). But, of course, there's a big difference between curiosity and gawking, and shame on anyone who makes another uncomfortable by staring. And, hey, because our thing isn't well known, it's almost impossible for anyone to be familiar with it. Who, on earth, could possibly guess that one of our eye muscles is attached to our jaws? I say, give the rest of humanity a break when you can. And the times when I'm offended at their rudeness, I give em a dirty look they'll never forget. They back off - FAST. I found it toughest when men thought I was winking at them - now that REALLY was a problem. Have you been winked at a lot? I also know when someone is focused on my lids when they start rubbing theirs - it's a "tell" like in poker. So I rub mine, too, and that usually gets them to recenter their thoughts.

One last thought about vanity...one of the absolute COOLEST things - ever, is that I've noticed as we age and our hormones change, honest to God, just about everything becomes OK. Remember when you were a teenager, and anything that happened was a BIG DEAL? Now that you're in your twenties, things still feel kind of strong, but wait till your thirties and forties. It's like being on anesthesia naturally. You get mellow and wise and still have a good body, so life is SWEET! For other times, there's always wine and frozen margaritas! Just know that as your friends and coworkers age, one friend becomes diabetic, another has a bad back, etc., etc., everyone falls apart a little, and everyone copes...so we're all in the same boat, and damn happy to still be rowing! You can trust me on this - I've traveled OUR road, and it does get a LOT better, really. It still stinks, but as other things stink, it stands out less in our minds! (By the way, I do have an extra sticker, and it's yours!)

Well, enough on the heavier aspects. I had a little trouble with my good eye recently (I'm on steroid drops this week), so that puts things into real perspective for me this month. Just hoping they can find out what went wrong all of a sudden - yikes!

I'm dying to ask about if you've had genetic counseling, eye therapy, other important issues like that, but this is way too much for one email/post.

On the lighter side, I've been looking for any excuse imaginable to justify a visit to the Mall of America, (hey, I am FEMALE after all) so one day I might mention that I'll be sitting under the roller coaster wearing a big, red flower if you're interested!

Till next time, take good care,

Nancy

Last edited by moderator2; 08-07-2004 at 06:33 AM. Reason: Do not post any kind of information to find a website not allowed to be posted.

 
Old 08-12-2004, 01:56 PM   #13
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Re: ptosis with marcus gunn jaw wink

Hi Nancy,

Sorry it took me a while to write back. Last night I was at home and had some free time so I sat down and wrote a really long reply to you. Felt like I was on the sofa typing for an hour. Well, then I was just looking over the reply before I posted and hit who-knows-what on the touchpad on my laptop and *poof* - there goes my message. Stupid touchpad (yeah Ė itís the computerís fault). I was so irritated that I wasnít about to sit there and re-write everything. So, Iíll just try and remember today.

About keeping my eyes lubricated. Yes, my eyes get so dry Ė and my left eye is terrible. I use the refresh gel drops and some other preservative free drops. The normal drops like Visine burn my eyes too bad. I used to use the lube in my left eye but for whatever reason stopped. Well, occasionally, at night that eye will tear really bad. You would think that would be a clue to me that something is wrong and I would start lubricating it again before bedÖ, but of course I didnít. I do wear a sleep mask at night sometimes that helps. So, after I read your message I decided that I needed to start lubricating that eye so I dug in the bathroom for the gel. Bad decision, obviously. I found the old gel and used it Ė woke up the next morning and my eye was throbbing and all gooey and crusty and bloodshot. The pain went away after a little while but it was bloodshot for a while. Now itís fine Ė I bought some new gel and I havenít had the tearing since and wake up feeling better too because some mornings that eye just hurts and doesnít want to open. So, thanks for the suggestion!!

I fuss with the eyelash curler on occasion. I need to get a new one because sometimes it pulls the lashes out and I canít afford to lose any!

I really love your outlook on life. I actually feel pretty good about myself, and am glad that Iíve grown over the last years. I had a very awkward time growing up and as a teenager Ė Iím sure my self esteem issues came from being teased by kids and not having the most supportive family life. But, that was then and this is now. I love learning and getting to know myself as I get older. I actually look forward to my 30s and 40s., who knows what theyíll bring.

And no Ė no sort of counseling or anything like that for me. I know that my grandfather is almost blind in one eye, and I believe he has glaucoma Ö thatís the only eye deal I know about.

Aside from that Ė the wine and margaritas always help!!! And youíre right Ė I do try and remind myself very often that I have it pretty good. I have a very loving relationship, a good job, a few good friends. And, of course, Iím glad Iím not like most idiots in this world

What happened to your other eye? Getting better?

So, anything else about yourself youíd like to share? Hobbies/pets? We have a dog and a cat Ė both mutts, which I think are the best kind. I canít really say that I have many hobbies besides those Iíve mentioned (Ö the wine and margaritas Ė haha). Actually, my boyfriend and I are both getting into health and fitness right now. I wouldnít say that weíre extreme, but I enjoy learning about the way the body works and the nutrition from food, etc. Natural ways to detoxify and cleanse the body, feel better, etc. Iíve been dealing with the headaches and acne for a while, and just a general sense of not feeling well and Iíve done more for myself in the past few months than all the years of going to doctors. Iím so fed up with doctors. All they want to do is just push pills on you.

Anyway, MOA is great Ė and not too far away from me. I honestly donít go there that much because itís so big and crowded sometimes. It is pretty cool though, just make sure you bring your walking shoes. We also just got an ikea right next to it. My boyfriend is doing everything possible to keep me out of there!

Anyway, thanks again for writing Ė and take care.

 
Old 08-22-2004, 05:42 PM   #14
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Re: ptosis with marcus gunn jaw wink

Hi Jackie!

I wanted to write back much sooner, but life got a little outta hand lately (hectic schedule). Anyway, how are? I was so sorry to hear about your (contaminated) lubricant reaction, but glad it cleared up. I'm confused about something I hope you'll tell me - did you have your pstosis lid cut off a little (shortened) or the MGJW sling procedure? Like I mentioned before, I had both these procedures, and that's why my (right) eye doesn't close when I sleep.
Anyway, I just wanted to know, if you wouldn't mind sharing.

As for me lately, it might sound like an episode in a soap opera (a.k.a. "daytime drama") so you can hum a little melodic organ tune before we begin, if you like, just to set the mood...

When we last left off, Nancy was having a wee bit of trouble with her "good" eye. The same eye that two different doctors just recently reminded her was the only eye she really used. The steroid drops weren't doing much, so Doctor Dogood suggested she have an MRI, a CLOSED MRI, my favorite thing! Okay, like a good trouper I go, and, lo and behold, the image wasn't close enough to see behind the eye wall (although the sinus area looked okay, and no tumor or anything scary like that showed up). In short, it was a complete waste of a perfectly good valium. So now they want to do a sonogram.... At last count, this would be perhaps the tenth thing I've done to try to figure out what has gone suddenly wrong, and I'm not a high maintenance kind of gal!

In addition, I had a new pair of incredibly expensive Maui Jim prescription sunglasses made, and couldn't see out of them. Then, went back to the glasses doc #1, had the prescription taken out of the MGJW eye, and had the glasses sent back (to Hawaii, I think) to be redone. They came back, and still I swear I could see clearer out of a fogged up snorkel mask then with these. I then went to eye doc #2, and he gave me yet another prescription! Forget the celebrities on Rodeo Drive, I think I've now paid more for a single pair of shades than all of Hollywood, combined! I'm now trying to get used to them, but because my vision keeps changing, and these glasses are smaller and curved differently from my old pair, I'm constantly walking around town bumping into things. I only need them for distances, so I don't wear glasses indoors, but I spend a lot of time outside, and really depend of my specs! Oy!

Well, soap fans: Will Nancy ever get her normal (well, for her) vision back? Will she find the right cure for her ailment, get lost in traffic, die of frustration, or will she just start glowing in the dark from too much radiation? For the answer to these and other burning questions....stay tuned next week! da da da dum....

Now, back to our regular programming....You mentioned your interest in nutrition, fitness, etc. Good for you! I seem to live a dual life: I'm somewhat of a "health nut" for the most part - I'm a lifelong vegetarian (although now I eat seafood for the B12, and, by the way, have nothing against eating meat, I just don't) and keep physically active. HOWEVER, due to the MGJW thing, I smoke and drink liquids often (green tea is my favorite). This is probably to keep my jaw in the sucking motion as often as possible. I think the technical term for this kind of duality is NEUROTIC! But, hey, I'm just doing the best I can!

Anyway, you're lucky to have pets. I can't wait to get a BIG golden retriever, but need more living space before I can adopt one. She also might came in handy as a guide dog, who knows?

Till next time,
Nancy

 
Old 09-14-2004, 08:30 AM   #15
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Re: ptosis with marcus gunn jaw wink

Hi Nancy,

Sorry it takes me so long to write back. I havenít had as much free time at work, and by the time I get home Ė the last thing I feel like doing is sitting at a computer.
I keep thinking that I need to write, and then before I know it Ė another week has gone by.

I went to the dentist this morning. First time in at least 6 years. Was having some sensitivity with a couple teeth. Well, two hours, over $400, and a completely numb face later Ė I realize why Iíve been putting it off. I have to go back for a cleaning and may still have to have a root canal done. I hope not!!

So, since Iím sitting at work and canít feel my face right now I decided to write you back. Sounds like a good reason to me.

I had the lever muscle in my eyelid shortened when I had the procedures. At least, I think that is what was done in all three surgeries. I guess itís possible that they chopped away some of the actual eyelid also or else there would be some extra skin there, which I donít have. I didnít have any MGJW procedure, as I was pretty much told that I should forget about it since I can somewhat control the wink.

My left eye doesnít close all the way Ė even if I just close my eyes. Like, I can make it close, but if I relax it stays open just a little bit.

I feel for you for all the trouble you are having with your eyes. I hope that the whole drama has improved Ė and hopefully ended! Have you done the sonogram? I have never had to do an MRI and hope that I never do. Have you had to do them before? A closed one would just drive me crazy I think Ė how long did you have to stay in there? You shoulda made the wonderful doctors give you a few extra valium since you had to do it for nothing.

I guess I could consider myself lucky that I wear glasses all the time Ė so when I need sunglasses I have the magnetic kind that just stick on the front. They arenít the MOST stylish things in the world, but they arenít bad Ė definitely not like those big black clip ons that the blue haired ladies are wearing. I am more and more considering trying contacts. Then I could wear just a normal pair of sunglasses if I want to. Also Ė I could get the colored ones. I am thinking of a dark color to possibly disguise the ptosis some.

About the nutrition deal Ė Iím trying to find a good yoga studio here. I was going to one place but the only class that I found that would work was Saturday mornings at 9. I did it for a couple months but then realized that I was kidding myself. Iím not THAT into this whole OM thing that I am going to wake up early on a Saturday when I could otherwise sleep in. It was a pilates/yoga class which was cool. Then, I tried another studio. I found that they had a 5:30 class during the week which was perfect for me (and a friend that I talked into going also). Well, we get there and find out that the class is yoga in a SAUNA! Not my type of yoga Ė within the first 5 minutes I was drenched in sweat and just didnít like a lot of the moves. I guess Iím not a real ďyogiĒ. There is one more studio that Iím going to try out this evening. I got my fingers crossed.

I take a bunch of vitamins every day. One, to try and counter act the acne that Iím still dealing with (itís getting better though) and the other is just for energy and trying to start on a good regimine early in my life. I definitely enjoy a good drink. Donít doctors recommend a bottle of red wine every day for heart health??

Anyways Ė work calls. Take care, and hope your eye is doing better.

 
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