I'm all Puffy. And not in the Diddy way.
Yesterday Dr. Q and my nurse said it was the steroids. My ankles are non-existent now and, well, it rather hurts. It's like wearing ankle weights all the time. It was hard enough to walk with the weakened thigh muscles, but now I'm carrying about 923408230 pounds of fluid in each shin and ankle.... Oh well. I FINALLY start my rehab today. Lets hope they can do something.
I also looked at my face in the mirror this morning and got totally sad. I look like a moon pie. All round and swollen and steroided out. Yeah, yeah, yeah, beauty is in the eye of the beholder, but I don't like looking so oompah loompah. Bad enough my head still looks like a chia pet, since my hair is NOT even close to growing, but now I'm all poofy faced. So sad because when I got the way way skinny, my face looked pretty cute, even bald headed. I was diggin it. Now I look like a moony alien.
It all just makes me want to hide and not get out of bed.
And then. Then I shut my piehole and just keep doing it. I have no choice here. I have a job to do, poofy faced and all. But I'm still sad. I am hating how I look right now. I know it's not forever, but I miss my own reflection. I miss recognizing myself and my body. I am really missing my hair. I found one of my pretty pony tail holders and started crying the other day.
And at the hospital I keep getting called sir. No matter how sassy my earrings are. Bastards!
I slept kind of crappy, but more than I had been the past few nights. I woke up about 4:30 and started thinking about who I am. And the first thing that came to mind was that I'm a mom.
A mom.
And what do mom's do? Well we just suck it up and do it. It's what makes us moms - sacrifice, determination, love, patience, stubborness, multi-taskers, humor, but mostly full of love.
I read back through some of my archives (skeery), and look over how hard it all was sometimes. Working, running around, taking care of Zoe and always on the go. But most of the time I just sucked it up and moved on. Which is probably why I really didn't realize how sick I was at the time. You are a mom and you just do things.
There is a girl at the hospital, Ashley, who is about ten days ahead of me in her transplant. I knew her from our leukemia clinics together. A sassy 23 year old from Florida - she and I have pretty much the same disease and situation.
But she's not doing well and has relapsed post transplant. I was sitting in the lounge when her mom came in and told me about it. The agony on her face was devastating to me. I could tell she had been crying. It hurt so bad to even hear it. Like they said, it's somewhat hard to be getting better when you know that someone is not. They are doing a few things for Ashley, but she seems so defeated right now. I just want to hug her and tell her it will be ok, but you don't know that. I hate cancer. It makes me so sad.
After Ashley's mom told me, a few moments later, she got this look on her face. Like a steely determination. And I just saw the mom look. I don't know what will happen to Ashley, but I know her mom is going to kick as much ass as she can to get that kid well.
I'm trying really hard, but I'm pretty damn tired. The leg thing is really bothering me. I think I am not listening to my body and resting enough. I am going to make an effort to do that more.
But I just want to get stronger like NOW. I just need to be patient and realize that it's going to take a while for that to happen. It's a delicate balance between taking care of your soul and working on strengthening your body.
I can do this. I'm going to make it happen.
Besides, I got some sweet Zoe notes in my last comments:
i love you from zoe lovezoei can spel som word cat dog can love joy genny green pink purple red you yes no off blue black by zoe
xxoxoxoxxoxxoxoxoxoxoxoxoxoxoxoxoxoxoxoxooxoxoxoxooxox
Today your assignment is to be patient. I know many of you are dieting, quitting smoking, working out, dealing with some major health issues or sadness, job issues, or just trying to freaking live life. Well today I want you to pray (if you pray) for patience or just work on being patient. Sometimes no matter how bad you want something to happen, or need for it to happen, you just have to be patient and let it happen in its own time.
I know I am the Queen of Zero Patience. I pray for that all the time - probably now more than ever. So today I want you to meditate, pray or try to just relax and have a little .... patience.
Question for Yiddish Yoda Master.... I was looking up the origins of Passover. Do you wish people "Happy Passover" like Easter or Christmas, or is it more of a solemn holiday?
Regardless, I hope you enjoy time with your peeps. As they are really lovely peeps!
Posted by debutaunt at April 12, 2006 05:25 AMHey your beautiful to me and to many others who are reading your blog and of course to Zoe most of all. I know the poofiness of steroids tho, it sucks. It will pass. Your going to be an amazon queen, super fit, give it time. I just know it. Hmm I think I may be one of the queens of patience, I animate for a living but maybe I could with being more patient with myself :)It takes 24 frames (shots)to make a second of animation... Ja ja ja mucho craziness.
Posted by: lynne at April 12, 2006 06:52 AMoh, I'm thinking now of that guns n roses song?
try a little patience...yeah...yeah...yeah, just a little patience.
anyhoo -
ya don't have to have steroid bloat to not like the way you look - half of us are disappointed with our hair or shapes or skin!
you're transforming into someone new!
OMG-I read this post, I have 5 kids hanging over
me. And kid 6 on my lap. I had to read this out
loud to them. I think I told you Lisabeth came
for Passover with her three kids. Two kids are
sleeping, but not mine...NO WAY. They are off
school. They are now into me reading to them
your daily post. The girl twin-her name is
Sydney, this is what she said. "MOM" tell her
the puffy stuff will go away. (She's 12 and she
would know). Spaz the one who is 11-said does
she really have that much fluid. I of course
said absolutely-his advice-tell her to take a
pin and pop her skin and see if that helps.
YOU NEVER WANT TO TAKE ADVICE FROM SPAZ. He
would have you in JAIL.
We all had to look at the Zoe pictures and Grace
(Lisabeths kids who is not a geography buff but
again she is 6) said "Can she come over here and
we can all draw".
Now answering your question-We say "have a good
seder". But it's OK to say Happy Passover. But
the Jewish folks would primarily say what I said.
The kids saw what you wrote on our blog. They
laughed, and laughed. 3 of them started dancing,
and said-do you think she would like "this move".
I am thinking HELL YES-move, go down to TX.
Deb you would be in the psych ward. See if their
is a vacant apt. in your complex. I will send
them down, and they can entertain you outside
your window. They were all thrilled that you
wrote about them. I will be listening to that
all day long.
Now-we are having a bajillion people here for the
Seder. What am I doing-reading your blog. Sam
took the day off, and he is out in the kitchen
cooking. HA HA HA. He told me, to just relax and
entertain these kids.
Now on a serious note-I can only imagine how
hard it is to look at yourself in the mirror and
see someone else. I can only imagine how sucky
this is for you right now. I think it's really
good when things get rough, that you do what
you do, and tell us on the blog. WE ARE THE
CHEERLEADERS.
I am not taking away from you any of those feelings you have-they are yours.
BUT (you knew I would have a but and I also have
a BUTT) this is a day to day. You are going to
have days where it feels like OMG will this
ever change. And you will have days where WE KNOW
THIS IS TEMP.
And Princess Zoe-Oh my what she did on your blog
was tooooooooo cute. She is a great kid, you
can tell how much she loves you. Heck any kid
would be lucky to have you as a MOM.
My assignment for you today. Love yourself, as
much as you love Zoe, your family, and us.
And these kids said to tell you. When you get
better, they ALL want to see you. You are the
big HERO HERE. They are so exicted you were
evicted from the Ritz. In their own way, they
too have hooked their hopes on you. My kids
miss Sarah, talk about her all the time. They
know she is your Guardian Angel, and we have
pics of you on the fridge, in the playroom,
and Spaz has your pic on his bedroom mirror.
Damn this was long, but long is good here. We
all love you, and you will be at the Seder
when we pray tonight. You will be at the top
of the list.
Love,
The Yiddish Yoda Master
Shoshie
And all these kids.
PS Grace wants to know if you like to color?
That kid is obsessed with coloring. I am telling
her that you probably color every day!
Bwahahahahahahahaha
Sleeping to 4:30 am has got to be a bit of a mixed blessing. I mean yes it's later than the last few days but just think of the very special episodes of "Mama's Family" you missed on the Weather Channel or the limited time offers on the Deluxe Bedazzler from Ronco that QVC had going a 3 am.
I too have a moon shaped face but can't blame any steroids just a love of carb heavy food for dinner....and it's not just my face that is getting moon shaped.
I will take today's assignment to heart. Patience is one thing I could certain use more of. So today I will pray for a PDA - Patience, Deb and Ashley. Take care, work hard and keep writing.
Posted by: Patrick at April 12, 2006 08:00 AMI will pray for patience today as well. Patience for me, patience for you.
What if you found a face painting kit or something and 'decorated' your lovely face? I see that they now have belly decorating kits for women who are preggers -- I think I would have felt a bit better about myself if I had thought of doing something like that when I was feeling like a big old pregnant whale. Maybe. It's just a thought.
Love you, Deb.
Posted by: CircusKelli at April 12, 2006 08:14 AMDeb,
Good Morning I am sorry your are so puffy.
I know Shoshie wrote a book here, but I need
to tell you, everyone can use a little more patience. Today we will all pray for you and
the world for more patience, and tolerance.
You can also say to Jewish people "Have a good
Passover". We usually don't say Happy, but it
all works.
Grace is sitting on my lap, harping about coloring
with you. We (the sisters) have told her you color
every day of your life. Now she telling me.
"Ask her if she likes Dora?". Oh the questions.
We love you Debuma
Lisabeth
Posted by: SWLF at April 12, 2006 09:48 AMi love me those sarah's sisters! they make me laugh and cry in just two paragraphs. those are some good peeps there.
patience. i can still hear my great grandmother yelling that in portuguese (sounds something like "pus-E-ence" or something lol) because one of us kids was making her nuts (like the time we broke the ceramic giraffes in her living room because we were throwing pillows). i say it to myself sometimes to remember her and to remind myself that i need more. i think sometimes it's hardest to have patience with oneself and one's own body--i can't imagine how you must be feeling so out of sorts in your own skin. i'd be equally impatient.
for you, today, i will be more patient. with everyone and everything, including myself.
xomox
Posted by: moxiemomma at April 12, 2006 10:00 AMI'm sorry about your friend, Ashley.
My mother, for some ferclocked (sp?) reason, liked to chop my hair off when I was a kid. People always thought I was a boy. Pissed me right off. Why can those idiots not see your sassy earrings? Dumbasses. Want me to come kick their asses?
HUGS!!!!!
Oh, and my husband always tells me that mothers can chew their own arms off for their children, whatever that means. Freak.
Posted by: Kami at April 12, 2006 10:00 AMI'm with Kami. But also want to add... you would think working with cancer victims that you should know not address some one with earrings as sir or mr. That just goes to show ya some folks should have their eyes, minds & heart exaimed.
Keep on mending!
Blessings to you, Zoe, Ashley & all your readers.
I'm praying for you . . . and Ashley. I hope the puffiness is just a short term thing. You still look beautiful though - truly.
Hugs
omg. the swlf sisters and their kids are all bonkers! i love it! i hope you all have a chance to have a big party sometime with debuma, zoe and the 9 million people in the swlf family.
have a good passover, folks, and happy easter to the others, and happy wednesday to the other others!
xoxo
Posted by: clandestine at April 12, 2006 11:05 AMConditions are so much easier to bear when you know they're temporary.
Like the Oompah Loompah song. It's in my head now.
Have a great day, Deb!
Posted by: mrtl at April 12, 2006 11:57 AMsomehow I thought the oompah loompah were more orange than round; but I'm not the "go to" person in that deal because the movie scared the living crap out of me as a kid and I still can't stand to watch it today (much like the wizard of oz - also very scary). I suppose you didn't really need ALL of that information ;)
I wonder why steroids help make athletes buff (and batshit crazy) but make the people who could use a little ego boost puffy as all get out. Totally unfair.
So, here's my story about steroids. Someone (Mr. Motorcycle) didn't like the steroid look at all. It wasn't doing wonders for his crazy adolecent wanting to be dating self and ended up refusing to take them anymore towards the end of his treatments. The docs, the parents, the nurses, everyone went batshit on him - but none could bully him into taking them; so he didn't. Thankfully this didn't have a negative affect (I swear he has more lives than a cat)on his health at the time. Fast forward to not so long ago - he gets a raging, mind blowing, eye popping, tear inducing, ear infection and the doc says steroids. And he refuses to take them based on the puffy, the doc couldn't convince him that this would be different. Apparently the batshit crazy thing stayed with him ;)
I'm continuing to pray for you and the most wonderful Zoe - you can totally do this - maybe we should give you a fancy super hero name like the "Mominator"
Maybe the next time you are at the hospital and someone calls you "sir", you could just reach down and grab your crotch in confusion, look up and say "Nope, not today!" and walk off.
My mom used to cut all my hair off too and everyone called me a boy all the time. I used to look in the mirror and practice growing boobs so people wouldn't do that anymore! Did you know you can do that??? Practice I mean? LOL
Zoe's comments are too cute for words. What a treasure for you and us! I like the superhero name idea too. Mominator! Just don't have a cape, 'cause you know what happens to those who have capes! If you don't know, watch The Incredibles...it's a good superhero education... I swear!
MWAH to you my dear. Peace...oh and some patience too...steroids totally suck!
Posted by: Traci at April 12, 2006 01:45 PMOh boy the dreaded fluid on the cankles, I can only imagine it hurts like no tomorrow. The fluid in the face, sucks also but it also means the steroids are doing there job. So its the drug we have to love but hate.
I hope your rehab goes well and I hope you relplace the fluid with mucles.........soon.
I need to accept you assignment and be more patient. I as so calm until one small thing can set me off. I will work on that.....thanks.
I hope your day gets less painfull
Nancy
Aw, how stupid is that, being called Sir? People can be so insensitive sometimes. Most of what you say about people just makes me sigh for you, but for some reason THAT makes me downright angry. (Which kind of says to me I should definitely pay attention to your assignment today and pray for patience. I think my fuse is getting shorter these days.)
The whole "mom" thing speaks to me right now, because of some things going on in my own life. See, you are a whole person, not just a person with cancer (I know you know that; I just feel like telling you right now that *I* know that). There is so much I can learn from every aspect of who you are.
You do more than you know, just by being you. Thanks, Deb.
Posted by: Philosophical Karen at April 12, 2006 02:53 PMDebuma,
Patience was a good topic today. I surpised my
sisters and came in for Passover. Shoshie has
a SIL who is not very nice. She is staying
at Nikki's and Sarah's house. She called here
at Shoshies and said "I see you bought food but
I don't see my Pinot Noir". Well Shoshie bought
her wine or should we say whine, but evidently
not the brand she likes.
We all have deep voices people call us sir all the
time. Tell them all to bite you.
We all wish you were here. Little Chubs, my
daughter you saw Nikki holding her. She has
a round face, we love round faces.
Today on Passover our cheer for you is L'Chaim
"to life".
Big hugs and kisses.
Rachel
PS Look for Shoshie on the news, she may kill her
SIL.
I can so relate to the steroid thing. After Lauren was born and I had all those back surgeries, I had to do the steroid thing many times. I've still got clothes in my closet (don't ask me why!) that are from that stage of my life. I can also relate to not recognizing your face when you look in the mirror. I did it when I was small and wondered what I would look like when I grow up. I did it as a young adult, wondering why I couldn't get my face to look like the most recent super star that was gracing the pages of magazines. I did it after the birth of my babies and wondered if I'd ever look like "me" again. I've done it recently, both with the colored hair...looked in the mirror and take a double take...who is that person. Oh, yeah, that's me. But, doesn't that look more like my mother with a bad hair day? Then I let the hair go "natural" which in my mind was silver blonde but in most everyone else's mind was gray, and looked in the mirror. Oh, that's me. Yeah, that's not shocking, except where did that extra part to my chin come from and why does my skin resemble a teenager's zit face? Then, I colored the hair again. So now, it's "yeah, that's me...but dang I'm getting old...and the hair color doesn't help!" I'm considering plastic surgery.
I can relate to the body not working right, too. I got a rude awakening the other day when I realized that I've been living with that leg not working correctly now for over 11 years. Every day it hits me at one point or another, you walk like an old fart, but most of the time I concentrate and think I could pass a sobriety test, maybe. Maybe, if I walk like this, people won't think I've just injured my ankle. Maybe, if I walk like this it won't hurt so much. It's turned into a game.
The thing you get to look forward to is that all of this is temporary for you. Your muscles will get stronger and you will grow new hair, and people won't refer to you as "sir". Will you always know you when you look in the mirror, probably not. I think we are all constantly changing as we get older, so we all have moments of readjusting our images of ourselves. I want my image to be what I saw in the mirror when I was 23. I wasn't satisfied with it then, but I'd sure as heck love it now!
Love you,
Denise :)
It is good that you are recognizing your need for patience and pacing yourself even when you are starting to feel better. You are such a goer that the biggest trouble you get into is when you feel good enough to do too much.
That is also a mommy thing to do. You know, when you have the opportunity to do something, you do it, even if it wipes you out some. (This is why moms often stay up too late goofing around after their kids go to sleep).
As for the steroid puffdaddy thing, just keep telling yourself the mommy mantra when you have hit a rough patch---today is not forever.
Oh, and here is the latest wit and wisdom of the fabu Ann Richards, as quoted in the paper today after receiving lots of well wishes from all over, "If I had known people were going to be so nice to me, I might have done this earlier."
Posted by: Sis#1 at April 12, 2006 08:43 PMI hope everyone had a good passover.
I actually forgot it was passover today, I think I wanted to try my hand at least part of a seder meal. Instead we (Zoe and my 3 kids) dined at Jason's Deli. No latkas for me, but I did have a lot of whine and some evil eyes from all of those "children should be seen and not running around the restaurant" kind of folk.
As a side note: I am sorry my kids did not behave perfectly. But what is a mom to do when a) Dad is out of town, b) football practice is held at the same time I usually cook dinner and over when I usually serve dinner, c) I have a two year old whose nickname is "Busy" and does not know the meaning of sitting down, and d) I'm sick AGAIN- so my game is a little off.
People reading this: the next time you observe people not behaving perfectly in this world, could you give them the BENEFIT OF THE DOUBT. You know a lot of people are not really jerks, they're just acting that way because maybe they are having a really hard day/week/month.
And on that note: I wish I knew it was passover, so I could paint lamb's blood around my door frame and maybe the miracle would be that all the children would do their homework, feed and clean up by themselves, bath and go to bed without a whimper. But I guess all and all my first born was not at the receiving end of some death plague, so that's pretty good.
Tomorrow I will have to miss Holy Thursday Mass, because they scheduled a football game at the same time. For some people that's great because they hate going to church, but I actually like going to church so... oh well, next year right. During that mass, we perform the foot washing ceremony. We wash one another's feet, usually within one's family. It's a symbol that we should care more about others than oneself. Last year I went, but didn't go up to have my feet washed because my 4yr. old daughter was asleep on my lap. It was sure sweet though seeing everyone taking care of everyone else.
Sorry for such the long post, and all the complaining. However the Hebrew people complained 40 years in the desert (some in Yiddish of course,) I think I can fuss ever once in awhile too. But what can I say except that I really have the need to express myself (which is different than expressing yourself in a loud whisper that the talking needs to stop because we have school tomorrow and we need our sleep-) even if it doesn't really have to do with a whole lot of what Deb was writing about.
Happy Passover, Ya''ll.
Posted by: sis #2 at April 13, 2006 12:13 AM