being sick, children’s hospitals and my VSG
I was reflecting upon the shit storm that has been my week tonight, and I had to giggle at the images that came to my mind. In a funny, not so funny, funny kind of way… this blog entry was born.
Last Friday I came down with strep throat. Momma is not allowed to get sick. Also, there is no room for a whiney momma. So, this momma has been sulking in the corners, feeling quite icky. I was given meds and was feeling better quickly, but then I was worse again and in a twisted Murphy’s law kind of way… it turned out that I had both strep throat and the Flu.
On Monday I had to take my son to see the rheumotologist. This appointment was of the utmost importance. So despite my crappiest feelings, I had to gather him up and head into Atlanta to Emory Children’s Center. There, we got out of the car, walked into the building and put masks on our faces. Go ahead, you can smirk. I looked like a Michael Jackson wanna be. My child looked as though he belonged to a Michael Jackson wanna be. Or we looked like we feared the bird flu. (The CDC IS right there ya know! I DID just watch contagion)
After we walked in, we waited a few hours… because I fucked up. I mixed up appointment times. I showed up for an appointment at 2:40 PM. Our appointment was at 10:20. I don’t know? He wasn’t seen. We went home. He has a disney character mask to show for the adventure, and a new appointment for the 20th.
On Tuesday, despite still feeling quite crappalicious… I gathered the girls up and headed back into Atlanta. This time we went to the urologist office. Kailey had to be seen, after her last ER visit. Again, we got there, parked, slapped masks on our faces and went on in. Again… we looked quite odd. It didn’t occur to me then. It never does. But now, a few days later I can’t help but both giggle and wonder. Yeah we were a sight.
But seriously, I have to wonder… WHY THE HELL were WE the only ones WEARING masks!???
When you walk into a children’s hospital, there are cute little notices everywhere you look “please cover your cough”. It’s the nice thing to do, right? RIGHT. Not to mention that you are in a CHILDREN’S HOSPITAL… where we have children with CANCER, and HEART DISEASE and AUTO IMMUNE diseases. There are children there who are susceptible to every damn bug known to man and more! So… why is it that I am the only mother in the whole damn place who has a mask on my face and on my kid’s face? SURELY…. I’m not the only mom there who has a kid with a crappy immune system. For me, its about more than being nice. Its about knowing that 99% of the population is clueless and stupid, and its about protecting my kids from other forms of funk. Our own brew is enough, thanks.
While I’m on this little rant… those stands of hand sanitizer every where, they are free of charge… so you should use them. Frequently. Like every time you wipe your nose with your damn hand. Yeah, I saw ya! nasty. Now, go pick up that Woman’s Day magazine that every other mom is going to reach for later. Thanks for that. You rock.
And this little tirade ties into my sleeve how? I have neglected the bitch this week. I haven’t felt well, I have not wanted to eat much. I have not stayed hydrated. When I have decided to eat, it has been cheese or cheese with a piece of cracker. There may have been some chocolate, it may have been in a corner so as not to be caught eating it. I have to own up to the fact that when life is crazy, being strict sucks. When I don’t feel well, doing the right thing is more work than usual. When I am stressed out, self sabotage is lurking around every freaking corner.
Tomorrow is my birthday. I’m going to enjoy it.
To those of you who wipe your nose and grab magazines… you are the reasons why I don’t use the library. Thanks.
Friday Night Spiraled….
The following is about my reality, my life as mom, my family and particularly my daughter Kailey. This is not Weight Loss Surgery related.
This past Friday my kids begged us to go to play BINGO at the school. The PTA put on quite the event. Pizza, Soda, Raffles and BINGO! With some HELLACIOUSLY AWESOME PRIZES! (there were birthday parties from monkey Joe’s and Sky zone, Nintendo DS, XBOX 360 games, gym memberships… and a lot more) It was a fun night out. We didn’t win a damn thing. Nothing. My littlest was in tears pretty early into the night. “I just wanna wonned” “I’m not wonning momma”. Lord help me, I told my husband to give the child a dollar and tell her it was a prize. It bought us about 20 minutes of happy. Despite the fact that we had about 20 bingo cards going, and didn’t win a damn thing…. we had a blast! The kids loved it (until they went home with out a prize. The 2 second car ride home was a car full of crying kids), we laughed and had fun, they saw friends… it was just a good time. I’d do it again. For anybody who knows me… I don’t DO after school functions. The idea of a cafeteria full of families and noise and wandering kids makes my brain itch. But I guess I’ve out grown that, because really… I’d do it again.
When we got home, things changed though. 3 of my kids went to bed and Kailey was in the bathroom trying to get herself catheterized. Kailey is medically fragile, you can hear more about her on my about Kailey vlogs. Because of her having spina bifida, her bladder doesn’t empty properly. She had a surgery a few years ago called a Mitroffanoff, which allows her to put a catheter through a stoma in her belly to her bladder, so she can pee. Her bladder is small. It doesn’t hold very much before she is in pain. If her bladder is over full, it is nearly impossible to get that catheter into her bladder, because her stoma has a ‘false channel’, and when she went for surgery to repair this the last time, she wasn’t stable enough to have it done. So… faulty stoma plus a kid who drank a soda and some water at Bingo = a night of mom and dad trying to get her cathed with every trick we knew how to use.
Kailey was in agony, and exhausted. Her stoma was bleeding and she started to show signs of shock. I called an ambulance and off we went to the Children’s hospital.
Once there, the nurses attempted to cath Kailey. The urology resident came in and tired. We used glide wires and different sizes of catheters. To make Kailey more comfortable she got some Lortab. The resident decided that a cystoscope was necessary, so Kailey received her first dose of versed and the Urology fellow was called in. Even with the cystoscope, they couldn’t get a catheter into her bladder.
Eventually the Urology surgeon was called in, another dose of versed was given and they decided to go for a pelvic puncture. They used a large needle and went through her pelvis and into her bladder. Once the needle was in, the urine was pulled out with a syringe. As the pressure was relieved, and her abdomen wasn’t as swollen, they were able to get a foley catheter through her stoma and into her bladder. It remains there now, until she has surgery to augment her bladder. This is not a matter of if, but a matter of when, and now rather than later.
What happened after all of this is what really has me spinning. At this point, we were ready to go home! Problem solved. Thank GOD! It was a long, night, but it was over and we were signing discharge papers!
As I got Kailey dressed, she started to have a seizure. Kailey has seizures every few months or so. Usually absence seizures, occasionally myclonic. What happened Friday night was not Kailey’s normal type of seizure. She was rigid, every muscle in her body seized up. She eyes rolled, she was gurgling, not responding to my calling her name. Her 02 stats were normal, her heart rate was normal, her blood pressure was normal… but the rest of her was twisted and contorted.
For nearly 45 minutes my daughter was in a state that I have never seen before. I was not prepared or in control. While I didn’t lose my composure then, I can’t seem to keep it together now.
What happened to Kailey on Friday night was a bad reaction to Versed. Versed is given to calm and relax the patient. It was given to her to make her comfortable for these procedures she had done. It is also frequently given to stop seizures. BUT in this case… the versed CAUSED seizures or seizure LIKE behavior? It caused her muscles to spasm. Become completely rigid. It was scary and horrible. BUT… there was a drug to reverse the versed and WHOLA… like that, my daughter was back.
Now we’re home. She is sore. We know that tomorrow or Tuesday we will be discussing surgery dates with her urologist. But RIGHT NOW… in this moment, she is snug as a bug in a rug. Happy to be home.
I on the other hand, am in a spiral of disbelief. I can’t believe the whirl wind that Friday night was. I can’t believe all that she endured. I can’t believe that blow after blow, this kid keeps on going strong. Meanwhile, every time I catch my breath… I break into tears.
What is the Obesity Action Coalition and What Do They Do?
Dear Readers,
Tonight I’m going to tell you about an organization that is near and dear to my heart and why it should be near and dear to yours. If you are reading my blog, then you need to know about the Obesity Action Coalition. I’m going to take liberties here and use my own words as much as possible and I hope that that is alright.
The Obesity Action Coalition is a non-profit organization that is structured to help ‘us’, people who are affected by obesity, advocate for ourselves. They offer educational information such as support group information, research articles, statistics and more. Then they offer weight loss information spanning the range of motivation, activity ideas, physician supervised programs to bariatric surgery options.
They offer advocacy on a NATIONAL LEVEL. I can’t stress this part enough. These fine folks actually fight the good fight, contact the legislatures regarding government policies, careful wording, health care, and biases. They urge our officials to be aware that obesity is not something that will be cure with crash dieting and that more often, obesity is related to more than just laziness. It has to do with economic factors, hereditary and environment.
Finally, tonight I’ll tell you about the “Bias Busters” because thats what brought me to define the OAC a little more for you, to begin with. Boas Busters was started to fight the last socially acceptable form of discrimination. Weight Discrimination. If you are rolling your eyes at me, take a good look around. Take a look at the TV, or the internet, schools, magazines… even our own jokes. Really. It is what it is, right? WRONG. We need to make this stop, and the OAC has put a program in place, that we can lend our voices to, to help stop the bullying of the obese community.
Right now, TODAY… there are two bias busters going on. 1st is regarding images of obese people, used in online articles. These images are cropped images, often obese bodies with out heads, or heads with out bodies. This immediately makes the person in the photograph and object rather than a human being. It takes human emotion away from the person. Easier to make them a target and therefore easier to look at other people in society, who have similar body types as less than human. Take a moment and contact the agencies that give out these photographs, let them know your thoughts on the matter. Please. http://www.obesityaction.org/gettinginvolved/biasbusters/examples/stockphotos.php
The 2nd Bias Buster issue at hand is on Facebook. Yes FACEBOOK. I know, you all love your facebook. I do too. Facebook has policies against hate speech. REALLY. They do. They don’t tolerate it (supposedly). “Facebook does not tolerate hate speech. While we encourage the discussion of ideas, institutions, events, and practices, it is a serious violation of our terms to single out individuals based on race, ethnicity, national origin, religion, sex, gender, sexual orientation, disability, or disease.” (see) HOWEVER… there are currently a WHOLE LOT of pages hating on obese people, and especially obese children. These pages need to come down. Once again, pages like these turn a person into an object, and spread a lot of hatred. It is unacceptable on so many levels. Please go here, read up, sign the petition and lend your voice to this cause. http://www.obesityaction.org/gettinginvolved/biasbusters/examples/facebook.php
As a mom, it breaks my heart to think that my children could be on facebook and “liking” pages like these. While we can patrol who our children are “friends” with on facebook, we really can’t control everything they are going to see, or what may color their views. As they stretch their own legs and form their own views of the world, I would hate to think that their views could be tainted by these dehumanized images, repeatedly popping up in their screens. I hate to think of how it could carry over into their social lives and their school lives. It all just makes me cringe and thank goodness that my babes don’t ask to be on these websites YET. I know its coming though.
So, do your part, do it for yourself, do it for our society. Visit the OAC website and see what you can do to help lend your voice to the causes at hand. While you’re there, sign up to be a member! You won’t regret it.
Weight Loss Surgery expectations
I spoke to a beloved, life long friend yesterday about her recent trials and tribulations with her vertical sleeve gastrectomy. You see, my dear friend had surgery back in August and she is looking amazing from an outward standpoint, but like so many of us post ops, she has struggled and she is finding that it seems to be taboo to talk about it.
Dear friend went to a support group meeting, and as usual everybody introduced themselves named their surgery, their date of surgery and their pounds lost. When she stood up and said that she has lost 110lbs in 5 months, the room erupted in applause. I’m going to give you a moment to think about this before I go on. 110lbs in 5 months. 110lbs in 5 months. Reactions?
Okay, initially lets be honest. The fat girl in all of us wants to say HOLY SHIT! 110 lbs in 5 months! WOW! TELL ME HOW! I WANT THAT! Right? Admit it. We all know it. Own it. OHHH AHHHHH YAYYYYY! Applause. Now, lets get back to the rational side of things. Pull up your chair, plant your feet on the damn ground and get your head out of your ass. 110lbs in 5 months kids. Is this an awesome accomplishment? Really?
What could make a newly post op sleever loose that much weight that quickly? (yep I’m giving you the stink eye)
Right out of the gate from surgery we are able to eat just a few tablespoons of food at a time. Slowly, over the course of weeks and months, we introduce more solid foods and a typical diet to our newly designed stomach. This new tiny banana shaped stomach eventually stretches to its intended size and is able to hold about 1 cup of food, give or take.
In my friend’s case, her stomach developed scar tissue rather quickly and so the stretching of her stomach was restricted. She was never able to get in more than a few tablespoons of food at a time. This scar tissue restricted the movement of her stomach and so her food wasn’t even moving through to her intestines for hours and hours. She didn’t have the ability to eat every few hours, because her stomach was full to capacity most of the day. She also developed an ulcer. Her tiny stomach was not a happy stomach.
While outwardly her weight loss surgery looked to be a raging success, she was the incredibly shrinking woman on fast forward, inside her stomach was injured and in need of help. Mentally she was in distress, wondering what was wrong with her, not sure if her issues were physical or mental. What she knew for sure was that her stomach hurt, she had buyers remorse at times regarding the surgery, she was worried for her health, and she couldn’t find any information related to what she was going through.
She had her stomach stretched, and her ulcer is on the mend. She is able to tolerate food now, and she is able to eat like a normal human being. APPLAUSE! YAY! But wait! For the past 4 months her body rejected food, and NOW, well now she is feeling a little panic about the food that is actually staying down!
Sadly, my reaction to her saying this was “Welcome to that.” Yes, welcome to the other side of the pendulum swing. Welcome to the other side of eating disorders. You went from food being your best friend, to now fearing food.
So, I digress, when the room erupted in applause, my soft spoken, sweet friend asked everybody to please hold those applause. As heads tilted and eyebrows were raised, she went on to explain exactly why she had lost the weight so quickly. And while in this support group, telling her truth, she was audibly shushed by the group leader… more than once!
Welcome to that too dear friend. I’m sorry that I didn’t express that to you before you had surgery. I had so much I wanted to tell you, I guess I never told you THAT.
Talking about the less than perfect weight loss surgery stories make you an outcast. Yes honey, I know, we struggled with feeling outcasted in so many parts of our lives, should this sacred place of support be one too? No it shouldn’t, but it happens ALL OF THE TIME. As patients we do NOT get anything by selling our choice of surgery to those new folks who are attending support group prior to surgery. We are not sales people, we don’t get commissions. This is not a product to love or hate, this is our lives and a medical procedure that we chose to help us live that life to the fullest.
My point to all of this is that complications DO happen. Mental fall out happens too. But this is not a miracle solution to cure all of your problems. This is not a product that you pick up off of a shelf. THIS IS A MEDICAL PROCEDURE that you are having done to your BODY! To go into it with the thought that it will be smooth sailing from the time you get cut open until the day you turn 225 is insanity.
If you are having a hard time keeping food down, call you doctor. If you can’t stomach more than an ounce of food at 4-6 weeks out, call your doctor. If you have ANY ANY ANY concerns, CALL YOUR DOCTOR! Don’t worry about being the squeaky wheel. Don’t worry about being a bother. Those guys get paid the big bucks for a reason. Be your own advocate, don’t be polite when it comes to your own health. Be an obnoxious pain in the ass.
And to the support group leader who suggested that my friend was starving herself, sigh… please let the truth be shared. If you are going to host a support group you can’t have it be a fucking sunshine party all of the time. THAT is not a support group. There is no support in pretending that everything is perfect. It only makes people walk away feeling inferior and self conscious. Just cut the crap. There is good, bad and ugly in every single day, in every single person, in every single life. BE SUPPORTIVE! If life after weight loss surgery was a cake walk, there wouldn’t be such a huge freaking community out there searching for each other… looking for people who understand. DUH!
Obesity in America Plateaued ….
This is the newest obesity related news article to hit CNN. The headline is ‘U.S. Obesity Rates Unchanged’. By title alone, what do you think of this? Is this GOOD news? BAD news? Not news at all?
Here is the article: http://thechart.blogs.cnn.com/2012/01/17/u-s-obesity-rates-unchanged/?hpt=hp_c2
U.S obesity rates unchanged
The prevalence of obesity in the United States seems to have plateaued, according to data released Tuesday. The numbers show 35.7% of U.S. adults and almost 17% of U.S. children and teens are obese.
“There’s been no change in the prevalence of obesity in recent years in children or adults,” says Cynthia L Ogden, Ph.D, an epidemiologist with the CDC’s National Center for Health Statistics and the leading author of the report. “But I think looking over the last decade, it’s interesting to see how the prevalence of obesity in men has caught up with the prevalence of obesity in women.”
Ogden and her team compiled the data from 2009-2010 using the National Health and Nutrition Examination Survey. The survey measured the height and weight of almost 6,000 men and women and calculated their Body Mass Index (commonly known as BMI) to determine if they were obese.
They found that from 2009-2010, 35.5% of American men and 35.8% of American women were obese, with African-American and Mexican-American men and women having higher rates of obesity than white Americans. Obesity was more common among teens than preschool aged children and among boys than girls.
“This is a good news story but this is not the end of the story,” says Dr. Valerie Montgomery Rice, Dean of the School of Medicine and Executive Vice President of Morehouse College.
“We cannot feel good… until we see a decrease in the prevalence of obesity,” says Dr. Montgomery Rice.
In Rice’s opinion, efforts over the last several years to educate populations about the importance of daily exercise, to encourage the incorporation of healthy foods into school cafeterias, and to combat food insecurity throughout the country is having an impact on the number of Americans who are obese. But she cautions that more needs to be done and that doctors should focus on giving patients realistic weight loss goals when counseling patients about obesity.
“It’s a difficult conversation to have with an individual, to say ‘okay, you are obese.’” People kind of know what ‘obese’ is but not really.”
For example, as an OB-GYN, Montgomery Rice counsels her patients on the dangers of belly fat and the reproductive issues that could be affected or made worse by obesity. She also encourages patients to focus on losing only 10% of their excess weight at a time.
“What I hope doesn’t come out of this study is that we start to think we’ve made some significant improvement and we stop the efforts that have been put forth,” says Rice.
| Post by: Caitlin Hagan – CNN Medical Producer Filed under: Obesity |
So, lets chat for a moment about my take on this. I think the fact that obesity is not still on the incline is great! We have all lent our voices to this fight. We want people to be aware that obesity is an epidemic and a disease. We want people to get help before they reach the point of needing surgical interventions. And we all want doctors to do their part in fighting this fight, am I right?
This right here ” In Rice’s opinion, efforts over the last several years to educate populations about the importance of daily exercise, to encourage the incorporation of healthy foods into school cafeterias, and to combat food insecurity throughout the country is having an impact on the number of Americans who are obese. But she cautions that more needs to be done and that doctors should focus on giving patients realistic weight loss goals when counseling patients about obesity.” is what I really want to talk about.
Doctors, are you reading? Probably not, but their patients are. So here goes. A doctor needs to be realistic when approaching the subject of obesity. We all step on that scale knowing damn well that it those numbers are screaming out begging for mercy the moment they pop up. We know we are fat, fluffy, chubby or morbidly obese. We don’t need a doctor who is going to be arrogant about it, but we also don’t need doctors who are going to spare our feelings and glaze over the subject either. So, this is where self advocacy comes into play.
I can’t urge you enough, regardless of how dreaded the topic and how embarrassing the numbers, talk to your doctor about your weight. Talk to your pediatrician about your child’s weight. Ask for advice about nutrition if you simply don’t know what you’re doing wrong. Ask for labs to be drawn to rule out underlying factors. Lets take control and grab this thing by the balls! Lets get our families healthy and give our children a healthier future.
A little bit of awareness goes a long long way! The article above is proof! Congratulations America! You didn’t gain more weight! You may not have lost a lot as a nation, but you didn’t put it on either and THAT RIGHT THERE IS PROGRESS! I’m proud of us! Are you?
There is so much beauty in being a woman.
As I sat here this morning, with my cup of coffee in hand, looking out my window at the dreary, muggy, rainy January day before me I openly said “Pick a season!”. Thinking to myself that Mother nature is certainly a wishy washy woman, and a freaking moody bitch. Then I thought about myself, and how these months, this time of year, multiple seasons meld one into the other in my life and I don’t really choose a season either. So I sat and reflected for a bit about women in general.
We are often quick to label each other as crazy, be it in jest or in anger. We call each other bitches as terms of endearment and as terms of hate. We, as women, do the most damage to the image of what women are! We don’t build up ourselves and we don’t build up others. We just don’t.
Women are strong. Women will fight for what they believe in, and get down and dirty in the process. They will argue and go round and round and round like a dog chasing its tail, not because they are crazy, but because they are passionate. Women are passionate about EVERYTHING! Show us a new product and its either LOVE or not. It’s pretty clear cut.
Women are sensitive. If somebody we care about is hurt, we care. If you say something that strikes us wrong, we care. When a woman tells you she doesn’t care, she cares! Women care. Really, we do. We care a lot. About everything. We don’t like to see suffering or hurt. We like it less if we have contributed to it. And even less if we see an underdog being picked on. We rally together. Often against each other. But its not so much out of hate, at the core. Its out of misunderstandings, mistakes, and sensitivity.
Women are nurturing. We will spend a long long time, willing to give our all for something we believe in. We love to know that our little efforts lend themselves to a greater cause. We love to be a part of a village. We are all very well aware that we are stronger with friends and family. Nurturing comes naturally.
When you see the quote “Hell hath no fury like a woman scorned” remember all of the above. It is not because a woman is crazy, or mean, or a bitch. Its because she is passionate, sensitive, strong and above all else human.
Is there one moment that ties into your obesity?
I know that with in this community we have people who struggle with so many issues. I am aware that many have fought obesity all of their lives. I know that not everybody has an addictive relationship with food either. This week The Biggest Loser started, and while I confess that I NEVER watch this show & this week is not an exception, the Spina Bifida Association of America posted Ben & Buddy’s interview and my heart stopped a little. Why? A few years ago Ben’s first child was born with Spina Bifida as well as other birth defects. She lived for about five months. She never got to come home. In his interview he talks of how that time in his life was a frenzy of work and hospital, with grabbing what ever fast food he could in between. This marked the beginning of his problem. I understand this so much more than I wish I could.
The timing of this is rough. I’ve told you this is my bad season. But I feel its really important to admit that my weight spiraled out of control, very much the same way. And I Imagine that if many of us look back hard enough, we can probably pin point a turning point where our choices turned on us. Where it was easier to grab something fast and fatty than it was to care enough about what it was we were actually doing to ourselves.
Before Kailey was even born, I was up at the hospital day after day being monitored. My dad was with me for most of those trips, and he sat by my side for hours. Even then, before the baby was born, it was easy to grab something sinfully delicious from Au Bon Pain in the hospital, than it was to put thought into what I wanted to eat before or after the appointments.
Once our girl was born, we (my husband and I) really both went down hill with our weight in a big way. Trying to live in 2 places at once is impossible. We had our 1 year old son at home, nearly an hour away from the NICU where Kailey was. Kevin was working full time, two jobs. We had to be with Kailey, we had to be with little Kevin. Our future plans were in a holding pattern because we didn’t expect anything from one minute to the next. We lived with fear and joy jumbled together.
We may have not been incredibly tiny people, but we were by no means the obese people that we became in the months and years that followed. After a while, the chaos became normal routine, and the desire to look nice or to even care was replaced with simply the desire to get through a day. Food became something that comforted the pain. Crappy day? Have a cookie! REALLY CRAPPY DAY? Lets see what the bakery has & while I’m up that way I’ll hit the deli for a hero and maybe the market for some goodies to leave in the fridge for later.
The eating, stopped being about the convenience of the fast food places near the hospital or on the road. It stopped being about nourishing our bodies. Sure, we made it a point to sit down as a family every single night. We cooked a healthy square meal and sat as a family. But that wasn’t the food that made us fat. That wasn’t the behavior that got us into trouble. That wasn’t where there was clearly addictive tendencies.
And here I am now, 18 months post Sleeve Gastrectomy. Happily sporting a size 10 jeans, a large top, watching that damn scale play between 175 and 185lbs (seriously those Christmas cookies were a bitch!) and I have to confess to you that I STILL to this day, want nothing more than to hit the bakery when I have a really crappy day! Fortunately I live in Georgia where they wouldn’t know what a good bakery was if it landed on top of them. And even then, the chances that a bakery in Georgia having a Linzer Tart is about as likely as a pig with wings. So I’m safe, for now.
Kevin is 1 month post his sleeve gastrectomy and he is down 50lbs. He is learning the ropes well.
We both see the behaviors. We know them, can target them, can talk about them. THAT is a big deal, ya know? It takes a lot to be able to say “wow, I did this to myself” But folks, I did this to myself. Certain foods comfort me, when nothing else can. Even now.
A quick update about TJ….
Back in October our son TJ presented with a swollen knee. We have run the gauntlet with this kid, doctors, testing and diagnoses. After a misdiagnosis of Rheumatic Fever, he has been seen by a number of specialists at Emory Children’s and the results are in…. sort of.
We know for sure that this is NOT post strep arthritis. With the MRI in hand, as well as ALLLLLL of the appointments between October and now it is clear to everybody and their brother that this isn’t a sprain or an angry knee, or some silly childhood injury. So, that leaves us to believe that this is Juvenile Idiopathic Arthritis and/or (depending on who you speak to and their views of the two/one) Juvenile Rheumatoid Arthritis.
So we have a name, or a few names to put on this knee. But the best news I can share with you is that since we saw the rheumatologist 2 weeks ago, TJ has been on Alieve twice a day and the swelling in his knee is actually down quite a bit right now. In the past it has gone down and swelled up again, but right now, today… right this second it looks GOOD! We don’t care what you call it.
TJ will see the rheumatologist again in February and hopefully we will be able to wean him off of the NSAIDS for a little while, to give his tummy a break.
Gosh I can’t wait to see what 2012 has in store for us!!
So here I stand…
I have started this post and deleted it time and again. I don’t have direction or intent. What do I want to write about? What do I have to share? Where have I been? What am I doing? How is life according to weight loss surgery? Does weight loss surgery even play as much of a role in my life as it did a few months ago? Am I once again redefining normal and redefining who I am? It seems I am.
I have made a conscious effort to disengage from facebook a bit, as I think being as deeply involved with it as I was, changed my perspective on a lot of things. So, cross addictions being what they are… I have found Pinterest and let me just tell you… I AM THE BIGGEST PIN HEAD OF THEM ALL! I’ve been dubbed “pin head” by the beloved Haven of http://www.blessmysouthernheart.com
Pinterest is inspirational for me. I sat there for a few days WISHING I could do a lot of the things I was seeing. Wishing I could have a lot of the things I saw. And then I asked myself why I was wishing and not doing? How much of my life had I sat on my ass wishing? This past year was all about doing! So, I started to do.
First I started cooking better for my family. HOLY MOLY, pinterest has some awesome crock pot savvy meals! I was cooking up so much that my mommy and daddy bought me a new crock pot and two AWESOME cook books to go with it!
Next I decided to tackle the house. Here is where I have to explain a little. Having four children in a very tight age group, I have always said that my house is my children’s home. 
I was never one to apologize for the toys and chaos strewn about. I have never been one to want my children playing in their rooms. I have wanted them on the same floor I was on. I needed to hover, they were/are/always will be devious little monsters who get into things you can’t even begin to imagine. Anyway, I digress…. they are now of an age, where I can allow them to be out of sight, and also expect them to be responsible for their own belongings. With that in mind, I decided to start reclaiming my home. Toys were evicted from the front parlor room, formerly known as the toy room and now known as the Christmas tree room, soon to be known as Momma’s space. My husband’s love of junk mail clutter was evicted from my kitchen. All clutter was evicted from the kitchen. The dining room was also taken over by the crazy woman who possessed the momma. And son on and so forth.
Finally, I found myself admiring doodle art. I was spending hours upon hours of time looking at people’s doodles. I learned that there are names to certain types of doodles like zendoodle and line weaving. zensplosions and zenspirations. Seeing the word “zen” attached to the doodles made me reflect a bit. When I was young there was no surface that was safe from me. Oh my mother would get so angry with me as I would color in the squares of plaid school uniform, write on the rubber sole of my shoes, draw on my jeans. I loved the feel of a roller pen on recycled paper, and the feel of a marker on a new vinyl binder. I loved the way a paper bag sucked in the ink of a sharpie marker. The sensory satisfaction I got from doodling made me content! But, it was just doodles. It wasn’t artistic. It was mindless, scribbles that felt good. hearts and circles, and hearts and clouds. Bubble letters and typical teenage angst crap. You know the type.
I got my very first journal a few days before Christmas. First I played with the back cover, then the back page. Eventually I moved on with a little confidence to do a whole page, and I completed it, then I completed my second and now I’m onto my third. I’m developing my own ways. I put pen to paper with no idea of whats going to come of it and by the end it just ends up as it is.
My doctor told me a while ago that I needed to find a way to silence my mind. To just relax and unwind, stop over thinking and just be free. I don’t really know how to free my mind, but I think that with pen and paper in hand I’m pretty close to figuring it out.
So this is where I am, this is where I stand. I’m holed up in my house, being anti social, reclaiming my life, being stingy and selfish and loving it.
Tis the season… for mixed emotions.
I have a hard time this time of year. Its not because its winter. or because its the holidays. 9 years ago I was pregnant with my second child. In November we went for our usual level II sonogram to check the growth and health of the baby, and it was then that we learned that out precious baby girl had so very many different birth defects. We were given terms like “incompatible with life” and “critical anomalies”. Our son was only 9 months old, and it was his 1st Christmas. Our world was spiraling. Here we were debating the fate of our unborn child, as the doctors pushed termination, and still needing to celebrate baby’s first Christmas.
I was in Harrows, a pool store by summer and a Christmas store by winter, walking the aisles in search of decor and a tree to make my home festive for my 9 month old son. Christmas music was blaring, and my heart was breaking. I called my mom on my cell phone and I fell to pieces. “Mommy, I need you. I need you to be here. I need you to help me. I can’t do this. I can’t. I just can’t find joy.” In the middle of trees and lights, I had the saddest breakdown and I simply needed my mommy.
Fast forward to today. Its Christmas time, and I have 4 beautiful children. Kailey, that baby who was “incompatible with life” is 8 years old. She fights a good fight year after year, as does the rest of our family… because this is our life. But every time I walk through a store filled with Christmas trees, lights and Christmas music, I feel despair. Helplessness, a vast disjointed vacancy to joy. I fight to play Happy Holidays, even though I have everything to celebrate. This my friends is the misery that is post traumatic stress disorder.
The months and years after Kailey’s birth changed my relationships with friends and people in general. I have become more closed off and I have become more guarded. People have a difficult time knowing how to be a part of your life, when you can’t answer the question “But shes going to be alright now, right?” with the words they want to hear. It is not anybody’s fault. People want children to be healthy and happy. It is unnatural for a child to be sickly, for a child to have to face the possibility of death. And I can’t blame people for being uncomfortable or incapable of being a part of our every day, because it isn’t easy seeing a sick child go from being strong and happy one day, to hospitalized and weak the next.
And so, it is the season that I pull back from the people who are always present in my life. I don’t know if I’m giving them a chance to scoot away or if its just that I need this time to be alone. But this is what I do. I pull back, a lot! Year after year, I’m rewarded to find that the people I love the most are always waiting for me.
I haven’t written in a while. I have been attempting new ways of working through the PTSD. I have been reclaiming my home, putting the kid’s things in the kid’s rooms and making the living spaces liveable! I have been trying out new recipes in the kitchen, ones that work well with WLS and with children. I have been searching for ways to inspire myself, to be creative, to let my soul sooth itself. Surely healing has to come, eventually, doesn’t it?
I have to confess to Christmas cookie loving. A little too much. Damn the cookies! The cookies and the scale do not agree with each other. Mind you I don’t have hunger, but I do graze! I know it, I need to cut it the hell out! Letter to myself… dear Michelle… CUT IT THE FUCK OUT! Love Michelle.
My other confession is that I may or may not be a 36 year old Groupie. Yes, you heard me! If I had the funds to go to this: http://www.kreweofrocckus.com/eng/ I totally would be there. Meanwhile, I am looking forward to these guys playing (hopefully… in the ATL area) http://thesweetteaproject.com/, and I have attended 2 shows in the past two months where I have taken more photos with one man than I have with my own husband in the same time period. Thats all I’ll say on that matter. Music calms the savage beast. Music makes me dance. Great music, written by incredible artists, performed by people who are sincerely endearing… well… its the whole package and I’m hooked! I’m sorry to these guys, that their groupies are not hot 20 year old chicks but rather moms with carseats in their trucks. But what ever! LOL
I’ve broken all kinds of blogger rules here. This is all over the place, too many words, no real point, not a lot of photos and probably won’t hold your interest. But here it is anyway. I needed to blog, it was a goal I set for myself and damn it… I did it! Love to you all. Thanks for hanging with me. It means everything!
Recent Comments