March 15

Polysplenia syndrome; a congenital syndrome of multiple splenic masses, abnormal position and development of visceral organs, complex cardiovascular defects, and abnormal, usually bilobate, lungs. (according to the free medical dictionary)


I know you may be wondering why i would post the definition of such a odd sounding syndrome. I have it. As a result of my polysplenia, i have (as it states) multiple splenic masses, situs inverses and a complex cardiovascular system, complete with big defects. Which, even after being repaired, has left me with my version of normal.


Now, nothing about me is normal, so its no surprise that my internal organs would be off. lol. Anyways, i posted this, as I have recently found that my heart probably needs additional "fixing." Not of the leaks, but of an obstruction and a narrowing of one of the canals in the heart.


This is no small task, nor a quick and easy fix. But, I am of the thought of, if its concerning enough for you to bring it to my attention and won't get better if its left to itself, then why not just go ahead and fix it now? But my doc wants to make sure all the ducks are in a row, and they have no surprises, which is a wonderful thing. I just have very little patience and want my body to go back to my normal. Be it ever so frightening to lesser docs, its what I've come to be used to.


I have two options as to how I can deal with this, I can hide in my bed, bemoaning my condition, or I can allow myself to have faith and trust in God. I have to choose the latter.  Feeling sorry for myself never solved anything.  


If it were not for God, i would not be alive, period.  The docs did not give me a good prognosis, but, I believe He sent a great surgeon into my life as an infant, and were it not for him, and God working through him, i would not be here today.   37 years ago, the prognosis was not very good for babies with heart defects.   But, here I am, coming up on 37, despite a few health issues, I'm not doing too bad. :)


As long as i don't dwell on the negative too much, i do well, i keep my faith up and i try to rest some, but keep active at the same time. Its so easy to fall into the hide in my room and do nothing way of thinking, but i have to remember my kiddos and that they need me.  My kids are such a blessing to me and they keep me young and happy.  I have to get through this so i can see them grow up and give me grandchildren :).

Zoey

Long time no post! So Sorry!!


Really crazy how you can let things get in the way of what you like to do. But anyways, no one to blame but myself. its been a while since I've updated, over a year, so i'm past due. Last February, Angel (our female cat) got out when the pizza guy came, he forgot the drinks in the car, so i left the door open while he did that and i put the pizza's on the counter.

Needless to say, Angel said woo hoo and took off *she loves to go outside and eat grass* Sad part is, we didn't notice she was gone till the next morning. We searched for her everywhere, asked most of the neighbors (cause you know, living in an apartment complex with a whole bunch of different kind of people - ones like me, who only talk to their neighbors if they talk first, ones who are in everyone's business, ones who NEVER come outside (although i'm kind of in that category too) and ones that just freak people out) and i did have someone tell me that a cat slept outside our landing the night before, but no one spotted her since.

It broke my heart, it broke my daughters heart, still does, almost a year later. And since I can't bring Angel back, i finally did the next best thing, I got her another cat, that looks so much like Angel, with her personality too, except she's a little bit saucier. LOL. She's a love bug, and if you have a lap, she's got a body for it. She doesn't care that she's 15 (yes 15)pounds, she'll give ya love. I don't' know why her owners gave her up, but their loss is our gain. She is a little pushy and if you aren't' petting her she will make sure she gets your attention, that is something that will need to be modified, but i think once she gets enough affection and realizes she isn't' going anywhere, she'll do well.

The kids love her, which is great, but i have to remind them that they can't ignore Taz, he's been alone this last 11 months too and he'd like NICE attention. Zoey isn't interested in giving him nice attention, but they are allowing each other to get closer, maybe one day they'll be friends. (I hope!!)

My husband likes to pick on the cats. He'll ruffle their fur and just mess with them (no he's not mean, but he can be annoying) Earlier today he was messing with Zoey, our newest addition and after he got done making her mad, he started to walk off. She LEAPED in the air after him and grabbed his leg, I couldn't' believe it! A cat that stood up to him! My respect for her jumped a bunch of notches, for sure. lol.

Angel will not be forgotten, but we need to move on, I can only hope and pray that someone has her and they are treating her well, the alternatives are just not something i'd like to dwell on. At all...

And more old MYSPACE Blog posts Dec 12, 2006 bah humbug!! Current mood:anxious people suck!! i am not gone for over 4 hours when i get home and it had been broken into and robbed!! Long story short, why are people such brats??? Im' just sick to my stomach.... ugh... Dec 14, 2006 a little more info.... Current mood:hopeful yeah, so they took alot of our stuff... they did find my laptop, but of course, someone HAD to drop it in the water, so it no longer works.. So i have to take it and see if it can be fixed. *sigh* Nothing else has been recovered.. and of course, everyone wants lists.... How am I supposed to know what 300 dvds they stole??? ugh... and the PS2 games?? sheesh... ugh... those people suck! So anyway... just waiting to hear from the police, the insurance company and the rental company. ugh... Well, the GOOD news is that my friend Bri had her baby!!! yay!! congrats bri, and welcome sara!!! woo hoo!!!! AND, we got orders!! woo hoo!! going up north! I've never lived in new england. New York, here we come!! yay!! i'm very excited, if you cant' tell!! AND, its less than a month till my honey comes home!! yay!!! I cant' wait!! its been the longest year EVER!! And that is all i have, i believe.. Really wish i could reorder my blog!!

And more OLD MYSPACE blog posts Nov 17, 2006 11 months today!!! Current mood:thoughtful Lizzie is 11 months old!!! 1 month till she is a year old!! Its amazing how time can fly in one part of your life and be so slow in another. Happy 11 months to Lizzie!!! Nov 25 2006 Two MORE!!!! Current mood:bouncy New Teeth!! We've got NEW TEETH!! yay. two more bottom teeth, up to 8 FINALLY! Dec 5, 2006 feeling crappy Current mood:lonely Its been a little bit since i've blogged last. Had a holiday reciepe party last friday morning. had a bunch of people RSVP, but only 3 showed and only 2 stayed a bit. I had been up late and up early cleaning. Lizzie started to get a runny nose and congestion last week. then she started with a barking sounding cough. Then I started to get sick as well. I have a stuffy/runny nose and cough. At the docs, i get diagnosed with sinusitus and lizzie gets diagnosed with.... NOTHING. she doesn't cough, her nose doesn't run or anything!! i'm like it was that this morning.... 20 minutes later, gee imagine that, its back!! ugh SO, now i get to be sick while lizzies fine.. ugh... i am sooo stressed out!! I feel like I just need a break and lizzies just full of energy!! i gave her spagetti o's she must be like me(hates them), cause she threw them everywhere but in her mouth... stinking messes!! my back hurts, and i just feel like crap and just wanna go to bed.. but once i'm in bed, then the blues begin. I miss my honey. I miss him being here, I miss his smile, the twinkle in his eye, all of him. I miss his arms around me and his lips on mine. i have 30 days left, and it just seems like forever!! Lizzie has less than 2 weeks before she'll be one, less than that till her first birthday party.. i've invited quite a few people.. i know that stacy and her family will come, will anyone else? UGH i hate stressing over things i have no control over!! this friday night, i'm hosting game night for the married women group i'm involved in.. i wonder how it will go Looks like there are only 4 yes' and 2 maybe's.... oh well, it seems like anytime I do anything at my house that hardly any people show. And I hate hate hate hate hate the thought of being alone for christmas. I miss my hubby and I hate to spend another holiday with out him. It just doesnt' seem right. Nothing is as good as it could have been without him. And yeah, he's not much on doing anything but, we have each other. I just feel extra alone this year. Everyone seems soo busy and wrapped up in their stuff that i feel like an intruder calling. I spend most nights home alone. Its almost like I only hear from people returning my calls or the ones i made. I really am tired of crying. and being alone. Its like last time, only worse, you look like crap and people are just like, oh its cause the kid wore you out. And people dont' want to KNOW how you're REALLY doing, it makes them uncomfortable. So, you suck it up the best you can, you cope however you can, you try to keep everything as normal as possible as comfortable as possible, cause change makes you nervous. And you try to talk to the one you love, and it always comes out wrong, they end up taking it the wrong way and then you're left frustrated and upset, then come more tears. Sometimes it feels like you should give up. But you can't as, that's not what you should do, not how you are, so you just buck up and try not to say the wrong thing. well, i need to go check o lizzie, she's not making much noise and she's there with unwrapped presents... And make sure i dont' try to rip my toe off jumping over the gate.

Yet more OLD blogs from MYSPACE Nov 7, 2006 stomache bug Current mood:crappy well, supposedly lizzies ear infection is over. I finally got seen last night and i have a stomache bug. that consists of naseua, puking and the runs. woopie... i feel like crap, slept almost 12 hours last night and still feel like crap. I had called for someone to look after lizzie, but then she puked this morning and had one bout of runs in her diaper, so i called and cancelled.. now i dont' know what to do. Lizzie ate a good breakfast and has seemed fine... I need to go back to bed, but dnt' want to sleep with her up and running around. I was so out last night i didnt' hear my cell phone ring.. i had a missed call from my friend jeannie. dont' get sick with this, it sucks!! Nov 8, 2006 Our poor baby Current mood:drained well, i am doing better *it seems* but lizzie woke up puking and pooping again. Poor baby. her little booty has to be on fire. I am exhausted, didnt' get much sleep last night. She did, but didnt wake up pleasantly. her sheets and mattress cover are in the washer again. ok, think i might give her a bath. Nov 14, 2006 update Current mood:contemplative well, kiddo is done puking *i pray* but she still has the runs. I'm not getting much sleep and am getting really frustrated, today she had 3 blow outs.... ugh.. that's just alot for such a little girl. I miss my hubby so much. He's my dream guy, and what i want. I love him more now than i did when we got married. I hate that he's so far away, but i respect his job and know that its a necessity. I get down alot lately, I need the motivation to continue doing the things i need to do. Supposed to be hosting a partylite party on saturday, i need to get everythign set up for that. figure out what snacks to make. I want to decorate for christmas before the party, so that way its done and i dont have to worry about it later. Thanksgiving is next week, i cant' belive how time is flying, but, it seems like the closer it gets to hubby coming home that the longer the days seem. I invited people over for thanksgivign adn i haven't heard anything, (except from you bri, i dont' expect you to haul your preggo butt back up here two weekends in a row!!) I bought a ham, i hope someone comes. (really wish the most important person was able to be here, I love you Kevin!!) Other than being sick, Lizzie is doing well, getting bigger and bigger!! Such a crack up! she loves to make me laugh. always doing something to make sure i laugh. I see her daddy in her and when she's making me laugh, i feel like he is. oh well, let me get off here, maybe, just maybe, i'll get to bed at a decent time tonight. Joy and Peace to you all!!!

Again, OLD blogs from MYSPACE Oct 30, 2006 My trip thus far... Current mood:cheerful well, we're halfway though our vacation. we had horrible times getting out of town, but we made it FINALLY, 5 hours late! oh well. I got to see my cousin and aunt, whom i haven't seen in YEARS, so that was awesome. Went to Disney last wednesday, it was a blast!! well, actually, we went to Disneyland and California Adventure. I can't post pics yet, but I will as soon as i can ! Thursday we went to the pumkin patch, it was cute, we missed the hayride though, so that kind of sucked(my fault, takes me forever to get ready for some reason lately), but other than that, Lizzie had a blast and Lance did as well, so that is what it was for! Had a restful morning on friday, then we went to the mall and out to dinner. great day! i got my eyebrows done, in a thing called threading. they used thread to get your eyebrows off, weird, huh? took like NO time. Saturday we went to universal and saw a little less than half. Lance gets overstimulated easy and needed his nap early. Sunday we went to an air show, i was concerned about Lizzie and how she would do, she did well, so that was good. It was nice, but it made me miss my sweet hubby so much (love you honey!!) So, that was the first week, not bad, going going going. But that's what vacations are all about!! Have a great week and happy Halloween!!!!! November 3, 2006 aaack, the week is almost over!!! Current mood:drained well, my time is almost over here in So. Cal. I have had a blast!! Thank you so much to Ally and Tariq sorry that time couldn't have been longer and Lois-Lynn, you are awesome! Okay, so i've uploaded *almost* all of my pics to 3 photo albums, here is the link: http://photos.yahoo.com/angeltazcuddy Take your time, there are like 800 some odd pics. Tomorrow is our flight, just two, not three, so that's "better" i guess. Lizzie is such a squirmy worm lately, not sure how we'll do! She's almost done with her meds for an ear infection, but i'm not sure its gone... there aren't any posts nearby, closest one is almost 2 hours away.... Just wanted to say hi and let ya know i'll be home soon. Have a great weekend!! Nov 6, 2006 sick Current mood:sick just wanted to say i'm sick. woke up this morning, made a phone call for lizzies dr appt and of course they had no one to see her, but said she needs to be seen, i can go to er or wait for the night clinic to open, i chose the latter ate cereal and went to bed. i woke up feeling really hot and very naseus. i finally puked a few hours later adn it was breakfast... still feel icky, puked again.. now i get to drive like this! uck.

Continuing my OLD MYSPACE blog retrieval. I wish we could reorder the blog posts so these older ones would be listed first... oh well. Oct 10, 2006 Blessings Current mood:grateful With all the things that go wrong and can go wrong in your life, remember all the blessings you have. no matter how big or small, there are tons, from the moment you wake up, to the time you go to sleep, they are there. Breath, life, love, joy, peace, family, friends, things you have, they are all blessings. Take a deep breath and say a prayer of thanks. Look at a loved one, an email from a loved one, and smile, you are loved and looked out for. God is there, dont' ever deny it. Bless someone today. Oct 20, 2006 Stressing! Current mood:anxious Ever have one of those days, when its like, oh man, am i gonna get to sit down any time soon?? I got up early, cause i forgot to take the trash out last night and i can't have a full trash can. So, got up early, took the trash out for the trash people and now am getting ready to make a home movie for hubby. He called last night (thank you sweetie!) and made my day. Apparently locked Taz in the computer room, Little knucklehead. no damage, he survived till i got up, it was only 5 hours or so that he was locked in there. Still got Lizzies costume to cut out and sew.. arrrgghh, stupid computer has been taking up so much time! I *think* its working. Seems to be. So, we'll see! I have my friends graduation today, yay!! She's come a long way, graduating from the police academy. I get to pick up Meg tonight, so i'm happy to get to see her again. I still have to get the house clean and finished. blah. So, let me go, have a great weekend everyone!!! Oct 20, 2006 Just saying hi Current mood:calm I am in CA right now, just chilling out. Just wanted to say hi and say i'm not sure how often i can get on line. I hope everyone has a great week!!!!

You Know They Are "Practicing Weather" When....

The forecast says "Through 9pm: Rain developing. The rain will change to a mixture of snow, sleet and/or freezing rain by mid-afternoon. Cloudy with temperatures steady in the mid 30s. Winds NNE at 5 to 10 mph. Snowfall of less than half an inch through 8:30pm." and its already over that now. then "Heavy snow this evening will diminish to a few snow showers late. Thunder possible. Low 28F. Winds NW at 10 to 20 mph. 4 to 6 inches of snow expected." is tonight's forecast. lol. Gotta love weathermen, i suppose, right? :D oh well, the great thing about NOT being in the artic north, is that this is SEVERE WEATHER, and i can handle this :D long as we don't' lose heat, haha.

Looks like DC will get it worse than us.

Whoah... thunder snow... interesting...

Hmm, a little more light left in the day... snowballs anyone? :D

A Letter Copied from the Thyroid Website

Dear Friend/Family Member:

Someone you care about has thyroid disease. You may not know much about thyroid problems, but I imagine, like many of us, you've heard things here and there. If anything, you probably associate the thyroid with weight problems, or think it's an excuse people use for being overweight. Or, you may already know someone else who's taking thyroid medication -- usually Synthroid -- and they seem to be doing fine, so you assume thyroid disease will be similar for your friend/family member.

There's so much more to thyroid disease, and while I can't cover it all in this letter, I'm going to try, briefly, to give you a sense of what your loved one is facing. So can I ask that you set aside for a few moments the information you do have about thyroid disease, to open your mind and heart?

The thyroid is our master gland of metabolism and energy. Every single body function that requires oxygen and energy -- basically, everything that goes on in our bodies! -- requires thyroid hormone in proper amounts. That means we need the proper balance of thyroid hormone in order to feel and live well. We need thyroid hormone to think clearly and remember things, to maintain a good mood, to grow hair and nails, to have basic energy to get through the day, to see well, to digest our food, to burn calories, to be fertile, to get pregnant and have a healthy baby, to have a good sex drive, and much, much more. In some ways, you can think about thyroid hormone as the gasoline that makes the car go. No gas, and there's no way to move forward.

Typically, a thyroid problem comes in one of several forms. Your loved one may be hyperthyroid...that means that the thyroid gland is overactive, and producing too much thyroid hormone. When the thyroid becomes overactive, you can think of it a bit like the gas pedal on the car is stuck, and the engine is flooding. If your loved one is going through hyperthyroidism, he or she may be feeling extremely anxious and nervous, with a rapidly beating heart, higher blood pressure, and even palpitations. Some people describe the sensation as like their heart is beating so hard and loud everyone around them can even see it and hear it! They may be hungry and thirsty all the time, suffering from diarrhea even, and losing weight. Others may even be wondering, wrongly, if your loved one's rapid weight loss is due to an eating disorder or some sort of illness like cancer or AIDS. His or her eyes may be sore, sensitive, gritty and irritated, and vision can even become blurry. Sleep may be difficult or impossible, and lack of sleep combined with the body zooming along at 100 miles an hour can cause extreme exhaustion and muscle weakness. Frankly, people who are in the throes of hyperthyroidism have told me that they feel and look like someone who is strung out on drugs, or who has had 20 cups of coffee after not sleeping for a week. With heart pounding, and all body systems going full tilt, your jittery, stressed-out hyperthyroid loved one may even feel like he or she is losing it, ready to fall apart at any moment.

If your loved one is hypothyroid, they are facing different challenges. Hypothyroidism means the thyroid is underactive, and not producing enough of the energy and oxygen-delivering thyroid hormone. This is like trying to get somewhere with barely enough gas and feet that can't reach the gas pedal. If your loved one is hypothyroid, he or she may be feeling sluggish and tired, and exhausted all the time. Think about the worst flu you've ever had, and how tired, and achy and exhausted you felt. Now imagine waking up every day feeling like that, but having to get up, go to work/school and take care of yourself and others feeling that way. Depression -- or feeling blue -- is common, as are memory problems and being fuzzy-brained -- we patients call it "brain fog." Your loved one may look in a mirror and not recognize herself (and I say herself here, because the vast majority of thyroid patients in general are women -- thyroid problems do happen in men, but are seven to ten times more common in women.) Because when she looks in the mirror, she sees the outer half of her eyebrows are thin or missing, her hair is thin, dry, coarse and falling out, her face and eyelids are puffy, her face is bloated and puffy, and she may have gained weight, despite eating less and working out more than everyone else around her. With hypothyroidism, anything and everything can be slow, even digestion, which can cause constipation. For women, periods can be worse, and come more often than before. Menopause can be worse, and come earlier than for other women. And after pregnancy, hypothyroidism can worsen postpartum fatigue and depression, and make breastfeeding difficult or impossible. And then there's that issue of weight gain. Your loved one may be following the most rigorous and healthy diet and exercise program, and yet be unable to lose weight. He or she might even be gaining weight on that program.
If your loved one has thyroid cancer, they have an entirely different challenge. The majority of thyroid cancers are considered highly treatable and survivable, so doctors and others often cavalierly refer to thyroid cancer as "the good cancer." But the reality is, no cancer is "good," and someone who has thyroid cancer has cancer, "the big C." Cancer as a concept is frightening, and raises fears and concerns. Someone with thyroid cancer typically does not have many symptoms to start, but will usually require surgery to remove the thyroid -- and this can be daunting, the of a several-inch incision in the neck. After surgery, many thyroid cancer patients will need to have followup radioactive iodine treatment to ensure that all the cancerous tissue was removed, and it can be many weeks after surgery before a thyroid cancer patient -- who by that point is typically hypothyroid -- can start thyroid medication to again get lifesaving thyroid hormone they need. And the thyroid cancer patient in your life will require lifetime of treatment for hypothyroidism, along with periodic follow-ups and scans to monitor for a recurrence of the cancer.

These are just a few of the conditions that can affect thyroid patients. There are autoimmune diseases -- Graves' disease and Hashimoto's -- that can be at the root of hyperthyroidism and hypothyroidism. Sometimes people develop a goiter -- an enlarged thyroid -- or benign nodules that cause symptoms. Sometimes a temporary infection causes thyroiditis. And again, these problems can be difficult to pinpoint, misdiagnosed as everything under the sign, and even when diagnosed, poorly treated.

So what many thyroid patients have in common is living in a world that overlooks, downplays, poorly treats -- and sometimes even makes fun of -- their condition.

Magazine articles, books by doctors, patients brochures in doctors offices -- and doctors themselves -- insist simplistically that thyroid disease is "easy to diagnose, easy to treat" even though patients know that this is far from the truth. As for "easy to diagnose," your loved one may have even struggled to get diagnosed -- to get taken seriously -- in the first place. Doctors regularly misdiagnose hyperthyroid patients as having an eating or anxiety disorder, and hypothyroid patients as having stress, depression, PMS, or menopause.

Worse yet are the truly unsympathetic physicians that we all too frequently encounter in thyroid care. Like the marathon runner with hypothyroidism who was in training, on a strict diet, and still gaining weight and was told by her doctor that she had "fork in mouth disease." Or the endocrinologists who tell patients, "Well, you should be GLAD, you know, because you have the GOOD cancer!" Or the doctor who diagnosed a woman with hyperthyroidism by clapping his hands together loudly behind her head, chortled: "Oh, I can always tell you hypers, because you practically jump off the examining table when I do that!"

There are advertisements and comedians who use "thyroid problem" as the not-so-secret code to describe someone who is fat. And there's a whole realm of scam artists out there trying to sell us cockamamie Thyro-this and Thyro-that "cures" for thyroid disease that in many cases can make things a whole lot worse -- or at best, not help at all.

Even Oprah admitted she had a thyroid problem, then claimed it went away, then said she had it but it wasn't an excuse for her weight gain, then decided not to get treatment, and continues to struggle with her health issues.

And perhaps saddest of all, there are friends and relatives who say "I don't buy this thyroid disease thing, it's just an excuse for not losing weight" or "Thyroid? Hah! She's just lazy!" Or, "Why can't he just get OVER it and get back to normal?" Husbands criticize their wives for gaining weight. Teenagers whisper behind a friend's back about anorexia.

Once we're diagnosed, treatment is not an easy fix for many thyroid patients. Doctors try to rush hyperthyroid patients into permanently disabling the thyroid with a radioactive treatment that will make them hypothyroid for life. Many doctors believe there is only one medication to treat hypothyroidism -- a medication that does not resolve symptoms for all patients. When patients learn about other available options, doctors may stonewall, refuse additional treatments, or push antidepressants, cholesterol medications, weight loss pills and more, instead of addressing the thyroid issues. The conventional medical establishment believes that treatment for thyroid problems is one-size-fits-all. This cavalier attitude means that many thyroid patients struggle for years to live and feel well, despite being diagnosed and "treated."

I'm here to ask you -- in a world where thyroid patients are disregarded, overlooked, misdiagnosed, abused, exploited, mocked, and ignored -- to be the person who truly "gets it" for the thyroid patient in your life. Be the person who understands that while thyroid disease may not be visible, it is causing your friend or loved one to suffer. Be the person who understands that even though celebrities aren't talking about thyroid disease, and sports figures aren't wearing bracelets to promote thyroid awareness, that this is a genuine, difficult, and life-changing diagnosis.

Be the person who opens mind and heart to the thyroid patients in your life. Be the person who listens, and learns about the struggles and challenges. Be the person who empowers the thyroid patient in your life, by helping him or her do as much as possible to improve health. Be the person to help find doctors and practitioners who do not view your friend or relative as a cookie-cutter patient on a thyroid assembly line. Be the person who helps the thyroid patient in your life to maintain balance-- to help find time for rest, for exercise, for stress reduction, for self-care, for proper nutrition, for fun!

Live well,

Mary Shomon
Thyroid Patient Advocate

11 years

Today is my 11 year anniversary with my husband. Its unreal to me that its been that long, yet it feels like it has been forever (in a good way, obviously)

What can i say about him? He's the man that takes care of our family, he protects others when he deploys, he's served his country for just about 20 years now, he loves all his children and would do anything for them. (and me too) and i would do anything for him. He has comforting arms and though he isn't a big talker, he is there for me when i need him.

He has the kindest heart, the most wonderful eyes, and when he lets it out, the nicest smile. I adore him to the moon and back several times.

I love you Kevin and I am thankful for you! <3

@---->-