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Toto's Dorothy

Very helpful member
Joined
Jan 31, 2012
Messages
1,033
Diagnosis
11/2008
Country
US
State
Kansas
City
Emerald
Yes, I know how to spell, it was intentional.

I recently went into a tailspin after my sister posted some pics of me during my daughters wedding dress shopping event. This was done on that famous F a c e b o o k site. Now I love my sister very much, but after careful review, I'm questioning that thought! I know its always been, "make yourself look better" approach when choosing your pictures, but come on now, how cruel can one be? All joking aside, it made me look at myself for the first time in a while. And like I said, my metamorphosis ain't on the purty side. Where's my butterfly? I'm looking more like the ugly caterpillar! I hope someone will say, "sounds like me!"

I didn't quite go over my body with a magnifying glass, I sure didn't need to! So I'm going to start at the bottom and work my way up. Feel free to chime in at anytime to ease my worried mind....

So, my feet have turned in with the three middle toes crumpled under. Big toes are pointing up and wee ones are straight. Calves are losing their tone with indentions? on the calf muscle on the inside. The calf itself is floppy (where someone can push on it and it just sways to and fro). As I go up to the thigh its more disheartening. My legs were always very muscular and firm. There was never any flab on them until now. If you lift my leg up, the once toned leg, now flops to the underneath. I would say a good 2 to 3 inches of flab where there once was muscle. You can feel what is still there is rock hard, but for how long it stays GOD only knows. Also the legs are contracted in a backwards Z shape.

Now for the arms, going to save the trunk for last. Heaven knows I don't want you vomiting until the end. My hands are contracted, but can be opened when "massaged". The first part of the fingers are very bony and twisting. The part closest to the hand, is suffering from swelling and I have noticed how much better it is when my fingers are straightened. Unfortunately, from the fingers being in the curled position for such a long time, the tendons or ligaments have shortened causing pain when opened. I also have lumps in the palms of my hands (either tendons or ligaments). The forearms are quite odd. I have a definite slice going from the top of my wrist, gracefully curving to the inside to the underneath of each. It looks like someone tried to take a slice of bread out of the middle of the loaf and then put the rest back together. I just doesn't quite fit. There is noticeable shrinking.

The upper arms are quite shocking. What was once a very little "wave" has become a tidal wave. What muscle that's left is hard to find, the rest is similar to my thighs and has also fallen to the back of my arms. Now this leads me to the shoulders. Not much to say, other than there is very little muscle left front or back. The scapula is very prominent now. No fatback.

And finally we come to the trunk section. I hope you have some phen er gan! To put it nicely, I look like I'm about 7 months pregnant. I am no longer able to sit up, so when I'm sitting in the wheelchair that I have for now, I am usually tilted to the back and one side. And like I said everything from everywhere else has just landed right in the front.

Now, I have not gained or lost anymore weight in the last few months, but if you looked at the pictures you would think I am overweight. I still wear a childrens large pants or shorts but I have had to go up in size in the tops. Its not due to tightness, it has to do with the rotator cuff problems (inability to raise arms).

My body is like 1 giant muscle spasm. The arms are in a v shape with the hands usually close to upper chest. Unless moved, that's where they normally stay. I've started with scoliosis (that I found out at the wheelchair clinic), no doc tor had mentioned this before.

I do hope someone out there can tell me that some of this is similar. As I said before, it ain't purty. And I do have a few words to say to my sister. But of course, I know her reasoning. There's an old saying, "To make yourself look thin, have fat friends." She also could have let me have time to dye my hair and get a haircut!. (I think she will be the first one I come back to haunt.)

So if you are brave, let me know. Is there worse to come? Will this "flabby fat" eventually go away? I hope this doesn't sound vain, but I was hoping to be that beautiful blue morpho butterfly. Not the d@rn ugly caterpillar! Thank you.

PS. To any wannabees, the fa scic u la tions just started a couple of months ago. Right foot, in the arch (was first to go). Left arm, back of the bicep (second to go). None in the left leg (third to go). And last limb was the right arm, in between thumb and first finger. Odd but true.
 
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Well, aint nothin' pretty about it, for sure but one thing you can count on, looks aren't important on this website!

We love you just the same - and that's the the truth!
 
Dear Toto, You are not alone, I am also morphing just like you are, we are not ugly caterpillars we are beautiful butterflies, the best people can see that in us, if they can't then shame on them. I may look different on the outside but I am still the same me and so are you. Vanity, yes I have it, sorry to say, I just cover it up {the bad parts) the best I can for me. Those that truely love us don't care they still love us. We are still the same nutty people on the inside, if the barn needs painting, paint, it if new siding cover it. We all Love you just the way you are, You are special to all of us and I cant see you anyway from way over here. I just love YOU! {{{{HUGS}}}}
 
I've read it twice, every detail, if I could change it for you I would, not because it matters to me what you look like but because it pains you so physically and mentally. You are right about one thing, you ain't purty, you're way beyond that dear Toto, you are beautiful and it would seem to me that everyone here knows it but you and that is the ugly bit we can try and change if you let us. Hoping for the best for you no matter what.....
 
Thanks you guys. Aaaaawww group hug! {{{{{{{{{{HUGS}}}}}}}}}}. I really just hoped I would lose it differently, if that makes sense. My once toned body is now a flabby mess. I just will have to make sure the hair is done and the clothing chosen with care. I guess I didn't realize what would become of ? Or what would happen to ?. Its all so scary, wish we had a manual that would say what roughly comes next.

I just don't like the tidal wave biceps. Its spring/summer and like to wear tank tops. I'm still going to wear them (not much choice since that's all I have to wear). Oh and Di, I found a few good web sites for sarongs. Placing my order in the next couple of days!
 
Hey, until about a year ago I still held out hope, small as it may have been, that I would die of a heart attack in bed with Brad Pitt. I've finally had to give up on the dream. You don't need to tell me it's hard to accept...
 
ToTo,
While I read your post every "I got that" and "sounds like me" added a new check to the list in my mind. When I was done I thought we could be twins. But if I said that aloud someone here would step in and say "make that triplets!". And another would say "nope, quadruplets!". And on and on.
 
Just glad to see you back on Toto. Als takes so much, but it can Never take away your goodness, your soul, and we love you just like you are:)
 
You'll always be a"hottie"!

Toto, it is only a shell we borrow until we have to give it back.

There's a reason the forum doesn't put out a member's calendar!

Hope you have a great day.

Casey
 
Yes, Toto, we're following right along with you and it really does suck.
 
Toto- this has made me cry, really really hard.
I hate what this is doing to you. If you could only see what i see...
I see NOTHING BUT beauty. I know the physical is changing Toto, but so is whats on the inside- and for the better. I have seen you gracfully deal with this crap Toto... not many can say that.
You have the biggest heart in the whole wide world, hands down. You have helped countless ppl here, me included. I dont care if you look like a troll or a supermodel. When i look at pics of you, i see nothing but beauty, because it shines from the inside.
the belly doesnt matter. the arms dont matter. i promise Toto. I promise.
But, i know the physical bothers you and I wish i could take that pain away.
I love you Toto. My forum Mom.
 
Toto, How did you get in my bedroom to see me? I too have all of the things you talked about...yikes the calf muscles (ha ha) swinging like a leaf..the curling toes and everything else. None of it matters ...we are still the same women, just a different outside. You are beautiful to me...I am fairly new to this site and your words of wisdom & humor have been so helpful to me. On Mothers Day we took pictures also...amazing I have lost lots of weight I can see in my face but all the weight transfered to other places. I can no longer to my own hair and unfortunately my husband is NOT a hair dresser. My grey is growing out, so my new look is half grey and have light brown, an entire new style. I can't do makeup anymore so try not to look in the mirror. Toto...you are such a great person and so helpful to so many. Hang in there.
 
Dear Toto....You forgot to tell us about your smile. Even if you are not physically able to make one your eyes will say that you are still smiling. Mine is quite crooked but I still make effort. To Heck with the rest of "Lou's" destruction.

Thank you for all of your informative posts.
 
I think you're beautiful Sweet Woman. I saw your pictures and I see your beauty. I love you so freakin much. Heart to heart. You are in my heart and I in yours.
 
Toto, I was estatic to see your pics on fb, because I saw the beautiful woman who is one of my best friends here... I totally agree that it sucks that our beautiful legs (formerly my best feature I might add) are flabby instead of muscle, and I've started calling them my "chicken legs". My tummy just doesn't want to go down either, and it's hitting my arms. My toes are blue and red, very patriotic I would say!

All this crap that we're dealing with aside, it is hard... but remember we're here for each other, and I love you! Not only do you have tremendous heart, you're funny as hell! :)

Love you lots,

Helen
 
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