I was Homeopathically-Injured

I would like to start this post by saying that I am not a doctor, or a scientist, or an astronaut.  Although I do know many, many doctors (seriously, I have seen close to 50 different MDs in the last 4 years) a few scientists and one guy who did a summer internship at the Air and Space Museum- so by internet article standards that pretty much makes me an expert.  I mostly get my news from Last Week Tonight with John Oliver, and since his show returned a few days ago (hooray!) with a giant expose on doctors taking gifts from pharmaceutical companies I have seen even more articles pop up in my newsfeed about the dangers of “Big Pharma.”

I get that the pharmaceutical industry is a big money making machine and needs a lot more oversight in place.  What worries me, however, is how this discussion feeds into the paranoia that leads people not to vaccinate their children because they believe doctors are only giving vaccines to get huge kickbacks.  The doctors John Oliver is talking about are making bank pushing things like Viagra and Anti-Depressants.  The Polio vaccine is not a big moneymaker, and I’m pretty sure it doesn’t have any off-label uses!

I will be the first to say that I truly understand that drugs can have horrible side effects- this is coming from a 35-year-old who has full blown Osteoporosis from all the Prednisone I took in the past few years.  But I will also say that Prednisone was the only thing that actually controlled my Ulcerative Colitis.  My doctors kept trying to get me off it, but without it, my flares were debilitating- I got Osteoporosis, but I didn’t bleed to death, so I count that as a win.

I would like to highlight here that I also tried everything else possible to control my disease.  If you aren’t familiar with Ulcerative Colitis, it is an auto-immune disease where your body attacks your colon and causes these horrible ulcers that are intensely painful and come with digestive problems that I am sure you don’t want to hear about.  It was like living with food poisoning for several years.  Oh yeah, and I bled- a lot.  So as much as I knew that steroids were not a long term solution, I kept begging for them because it was only when on a high dose that I got any sort of relief.  I went through 6 or 7 other prescription drugs, multiple specialists, tried all sorts of diets, acupuncture, some wack-a-do thing called Total Body Modification (which did absolutely nothing and was stupidly expensive btw,) and spent months in treatment with a woman who is a highly regarded naturopath.

I did my research and found someone with excellent credentials, wonderful reviews and great recommendations.  This woman was lovely and kind and I am sure that her methods work for some people, but it was the holistic supplements that she gave me that sent me into the worst flare of my life, and down the path where I eventually had to have my colon removed.

This is where I get really worried about people who choose to use Complimentary Alternative Medicine instead of the opinions of actual doctors.  Because medical specialists exist for a reason. I have a GI Specialist, Colon and Rectal Surgeon, Endocrinologist, and a guy who just focuses on Osteoporosis in young patients because no one person can possibly be a true expert in all of these fields- there is just too much information.

When I went to the naturopath and asked if she had ever treated anyone with Ulcerative Colitis, she said “I treat the whole person, not just the disease,” and then gave me some water that had been blessed by a Shaman to drink.  But I bought into it because I wanted so desperately for something to work.  Her months of treatment never helped me (she convinced me that all my problems were because of diet, but after 4 months on her strict and gluten free meal plan, my symptoms were no better) and when I got a cold, she gave me some herbs that probably work fine for people without a diseased colon.  But because of my medical conditions, something about them triggered a life-threatening flare for me.

And then when I went on prednisone again, it no longer worked.  So we pulled out the big guns and I went on Remicade.  This is an iv immuno-suppresent with a host of nasty side effects but at this point I was willing to do anything to get some quality of life back.  It looked like I was getting a little better for a few months and then it just stopped working.  That was the point at which my GI had a long sit down with me to discuss options.

At that meeting he told me that if I wanted to continue to try various perscription drugs there were many left that we could attempt to use.  But he flat out told me that in his experience patients that have proven resistant to multiple treatment options often don’t find a drug that works for them, and he referred me to a surgeon to discuss removing my colon.  At first I was horrified by the thought, but after a lot of research and discussion with my family and doctors, I realized that this was the best option for my long- term health.  I am happy to report that a little more than a year after the first surgery, the only thing I take for my digestive system is Imodium and an RX probiotic.  I am pretty much drug free except for my Synthroid (because of the thyroid cancer, but that’s a whole different story!) and my Xanax- which you would have to pry from my cold dead hands!

I tell this lengthy story for a few reasons.  First of all, while I don’t doubt that there are unscrupulous MDs that over-proscribe because of the perks they get from drug companies, I also KNOW that there are many doctors who do what they do because they truly want to help people.  I’m pretty sure that my GI would have made a lot more money by keeping me on a string of different drugs- at one point I was coming to his office twice a week (and now I only need to see him once a year!)  Also, Remicade is extremely expensive (around $7,000 a treatment) so he also could have pushed me to keep trying that for another six months.  But instead, he referred me to a surgeon who CURED me!  Granted, it was a horribly invasive cure that required 2 surgeries, weeks in the hospital, and close to a year of recovery, but long-term the drug companies are making a lot less money off of me!

Secondly, all of this concern about “Big Pharma” is just fueling the vaccine debate- WHICH SHOULD NOT BE A DEBATE.

As someone who has spent the better part of the last four years either with newborn infants or in a severely immunocompromised state, I beg you to vaccinate yourself and your children.

Measles and Whooping Cough are coming back because we can no longer rely on herd immunity to protect those that cannot be vaccinated because of age or actual medical reasons.  Yes, some people have vaccine reactions- some people are also deathly allergic to peanuts.  Are you not introducing your child to any potential food allergens because there is a small chance they might have a reaction?  If so, fine, that doesn’t hurt anybody but your child who will just be eating boiled chicken and white rice for their entire life.

But choosing not to vaccinate does hurt people.  Little babies are getting sick and you can prevent that.

I am truly shocked by some of the things that friends and friends of friends believe about vaccines.  For example- I am 99.999% sure that vaccines are not, in fact, made from aborted fetuses.  If that is why you don’t vaccinate your children, I am 100% sure that I just unfriended you on Facebook.

And then there are the people I know who are incredibly well read and educated, smart and articulate, who still refuse to give their children vaccinations.  And that’s where I circle back to homeopathy.

Most people who don’t vaccinate cite individual examples of vaccine-injuries as one of their reasons.  Well, if anecdotal evidence is enough to convince you, then your shouldn’t use homeopathy either because I just told you a story about how I was homeopathically-injured.  Therefore, homeopathy must be terrible for everyone and evil and it is irresponsible to give to your children.

Oh wait, but there is a contingent of people who believe they can get full immunization just by using homeopathic products.  So they are giving their babies all sorts of herbs and medicines that are not at all controlled or tested by the FDA.  Is the FDA flawed? You bet.  But it is far better than having no controls in place.

Here’s a fun tidbit for you: Hyland’s, a very popular brand of homeopathic medicine, uses Belladonna in it’s baby teething tablets.  Does that sound familiar?  It is a highly toxic plant, also known as Deadly Nightshade, that people used to poison each other with in ancient Roman times (I heard about it on a tour of the Getty Villa, but I digress.)  Apparently it is such a small amount that it shouldn’t have any adverse effects on children.  But there is no one but the company making it that oversees the process and makes sure that the batch you give your babies didn’t get a little extra POISON in it by mistake.

Look, despite my history, I am not an alternative medicine hater.  I think that it actually has great benefits for some people if used carefully and with the knowledge and guidance of a person who has actual medical training.  But it is called Complimentary alternative medicine because it should serve as a compliment to advice from your MD, not in place of it.

Find doctors that you trust and then listen to them.  10-15 years of medical training is not exactly a “get rich quick” scheme.  Most people who go through that do it because they actually want to help, not so that they can secretly inject your littles with mercury and aborted fetus tissue while bathing in $100 bills from the makers of the whooping cough vaccine.

HAHAHA I'll pay off that medical school debt one needless Polio shot at a time!
HAHAHA I’ll pay off that medical school debt one needless Polio shot at a time!

Please, don’t let your internet “research” guide you to leave your kids open to  diseases that could kill them or that they could spread to others.  Because anyone can write an article on vaccines… you just read mine and I fully admitted in the beginning that I get my news from a comedy program!

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You Won’t See My Facebook “Year In Review”

Seriously, stop asking Facebook.  No, I do not want to share a montage of my life the past year with the caption “It’s been a great year!”  Because 2014 sucked!

It's been a great year for drugs!  Sadly most of them are anti-diarrhea and anti-nausea...but still!
It’s been a great year for drugs! Sadly most of them are anti-diarrhea and anti-nausea…but still!

It has been nothing resembling a great year, in fact I can genuinely say it has probably been the worst year of my life.  Now before I go on, I want to make it very clear that I have had bright shining moments this year.  I have found love and support everywhere I turned, I have reconnected with old friends and made new ones.  I have had some wonderful times with my family and been hugged a million times and laughed a lot.  For example, today my husband taught Curly to do a dance routine that included “The Sprinkler” and ends with Jazz Hands.  Well, to be fair, she is 2 1/2, that is pretty much the whole routine, but still… awesomeness!

But honestly, the best thing I can say about 2014 is that I survived it.  I survived 3 major surgeries, the removal of my colon, 3 months with an ostomy bag, a skin cancer biopsy, a thyroid cancer diagnosis, the removal of my thyroid gland, panic attacks, depression, anemia, and being told by multiple doctors that my hemorrhoids will probably never go away.  I survived 16 days in the hospital and countless more in recovery.  I survived mountains of pain.  Epic, horrible, screaming pain.  Pain that was so bad that when I finally got the drugs (I heart you Dilaudid) that helped, I may or may not have tried to kiss the male nurse who gave them to me, with my amazing husband standing right next to me.  Umm awkward!

I struggled with seeing my husband take on more than anyone should ever have to by caring for me and our kids.  He stepped up in a major way but I hated having to watch him do it and not being able to help. I survived not seeing my little loves even by Facetime because all the tubes I was connected to scared them.  And after months of being at home with them but being too tired, or sick, or in pain to play with them, I survived learning that I can’t always be Supermom.

That was a hard one for me.  I have never been good at the home-maker part of being a stay at home mom.  So having other people come around and help clean, cook, and do the dishes and laundry was perfect for me.  But I’ve always been good at the “Mom” part.  I love getting on the floor and playing silly games with Flopsy and Curly.  I love teaching them, and listening to them, and reading with them, and wrestling with them, and cuddling with them. And for a good part of this year I couldn’t do those things, and when I did, it was not with my usual enthusiasm.  I survived letting someone else take care of them when I did not feel up to it.  And guess what?  They survived too!

And I came out of this year a changed person.  I really don’t think I could go through all of that and not be a little different at the end.  I am much more anxious about everything, and I don’t really trust my instincts when it comes to my health.  Finding out I had cancer when I had absolutely no symptoms and between two other major surgeries for a completely different issue, kind of made me into a nutcase.  So now I tend to expect the worst, am kind of always waiting for the other shoe to drop, but I’m working on that.

I do like some of the changes in myself though… I have found this blog, a place where I can be truly honest rather than just “sucking it up” or pretending that I am fine when inside I am a giant hot mess.  It has been wonderfully liberating to have pretty much everyone I know (and a lot of strangers) filled in on my struggles so people are kind of caught up to my drama and I don’t have to spend every moment talking to them discussing my health issues, because I Refuse To Be Old!

I also really like that I have become a resource to people who are going through a difficult time.  Over the past year I have had friends come to me to talk about surgerymiscarriage, anxiety, depression, cancer, and lots of other issues because of how open I have been about my difficulties.  I don’t want anyone else to ever suffer through the things I have had to deal with, but if they have to, I am at least grateful that I can be there for them.  I can be a listening ear that lets them cry or a voice to tell them “that just sucks,” and allow them to feel their negative feelings, because pretending those don’t exist doesn’t make them go away… believe me I tried.

And I love that I have become more compassionate, because I understand that things can get really, really bad.  And that I want to make it easier on people going through a difficult time in any way I can.  So I started a non-profit, Mommies In Need, that helps sick moms have temporary in-home childcare so they can focus on recovery rather than constantly worrying about who is taking care of their children.  I may have done it with no plan in place and in a very fly-by-the-seat-of-my-pants manner, but hey, we got 501(c)(3) status in just 2 months, so I must have done something right!

So I guess that 2014 hasn’t been all bad, just… complicated.  There is no way that a Facebook algorithm is going to be able to sum up my year, so I did it here instead.

Friends, family, and virtual friends, I wish you a very Happy New Year and a wonderful 2015.  To 2014 I say, “Don’t let the door hit you in the ass on the way out!”

** If you want to help other mommies out there who are sick and need help with childcare in 2015 and beyond, please consider donating to Mommies In Need here or share that link wherever you can.  We accept Paypal and all major credit cards (or you can mail a check) and you can get a last minute 2014 tax deduction!  If you ever wanted to do something for me when I was sick and didn’t know what to do, you can help now.  I am really passionate about this cause, and starting Mommies In Need has been a huge source of healing for me.  It helps me understand that maybe all the crap I went through in 2014 can lead me to something positive in 2015 and beyond!

I’m So Over The Elf

So here it is, yet another post about the Elf on The Shelf for your Facebook feed.  I have read a lot of these blogs and articles advocating how the Elf brings a smile to their kids faces or about how the Elf is super creepy.  (Personally I go with super creepy but that is probably because my #1 nightmare as a child was about my dolls coming to life to move around the house when I slept.)  What bothers me is not that people are voicing their sometimes very hilarious takes on the whole Elf thing, but that in the comments sections Moms are waging war on each other.

I think this little guy might cut me in my sleep, but I truly don't care if you want to move him around your house!
I think this little guy might cut me in my sleep, but I truly don’t care if you want to move him around your house!

Over an eff-ing Elf.  Seriously people, let’s take it down a notch.  Move a little Elf around your house and tell the kids it spies on them and Pintrest it every day in excotic locales and/or hilariously ironic settings.  Or don’t.  I really don’t care.  I certainly don’t think it reflects poorly on your parenting one way or another.  It’s just a holiday tradition.  I don’t get up in arms about what kind of Cranberry sauce you use on Thanksgiving (BTW the proper answer is none, it’s disgusting) or what kind of Halloween candy you give out (but seriously Dots lady, those thing are like gobs of Kool-Aid flavored cement) so why are we so defensive about our position vis a vis Elfgate?

It’s just another way to get all up in each other’s grills, because that is a lot easier than doing something productive.  And I get it, I am a stay at home mom, so I often feel the need for righteous vindication.  I stopped breast-feeding and supplemented with formula because of health reasons. My babies never slept in my room because every noise they made woke me up in a panic, I learned that with the monitor on the lowest setting I could hear if they really cried but not every whimper and that is what I used.  And we did a modified cry-it-out thing because I am terrible at instituting a pre-planned course of action that involves hours of baby crying, but we desperately needed the twins to sleep.  I sort of wore my kids but only because it meant I might have one hand free.  I give them every single vaccination that my pediatrician recommends and if they are sick they get Tylenol or antibiotics.  I am firmly anti-spanking but also at a total loss right now because time-outs seem to be nothing but a joke to my littles. I made my own organic baby food for about a day and then gave up and moved to those packet thingies.   I have spent many nights away from the loves of my life both because I had to (like when I was in the hospital) and because I wanted to (because getting a break makes me a better mom.)

I have made a lot of decisions that other moms might not agree with, and it feels incredibly personal when someone attacks the way you raise your children.  So personal that it sometimes makes you want to leave a nasty comment on that someone’s shared article because you just had an XL glass of wine and a really hard day and how dare they flaunt their obviously wrong choices in your Facebook feed!  Because being a stay at home mom means that a huge part of my identity is tied up in the parenting and lifestyle choices I make for my kiddos.  And I personally have a deep seated insecurity that I am probably screwing my children up in a million small ways that they will one day work out in very expensive therapy.

I am just trying to figure this parenting thing out as I go, and every new study, or article, or child development book floods me with anxiety that maybe I have been doing this all wrong and these precious creatures that I have been entrusted to care for are going to be the worse for it.  And then I try and take a deep breath (and maybe a Xanax) and realize that I know deep in my heart that my way may not be the “best” but it is the best I can do for my family given our circumstances.

So this holiday season, I would like to challenge us all to just be a little kinder to each other in social media where the easy thing is to only speak up when you are angry.  Maybe do a little something I like to call Anti-Trolling.  Instead of finding those threads that infuriate you and sparking up a rousing debate that is going to change no-one’s mind and will probably leave everyone feeling like crap.  Let’s take that energy and instead use it to give some loving words of encouragement to something a person took the time and energy to write, or sing, or make into a video.  It’s kind of a new hobby of mine.  In fact a few of my consistent blog readers/bloggy friends are complete strangers who I Anti-Trolled because I read something of theirs that sparked a desire in me to compliment them or just send a little kindness their way.  Give it a try, I promise there is a lot less remorse to drunk commenting to someone, “You are the greatest, I loooove your writing, I think you are super awesome and I want to be best friends and watch Mean Girls together,” than to actually being mean!

I Refuse to Be Old

In a few days I turn 35!  I realize that in the grand scheme of things, that is not old, but I have to say that in the past year I feel like I have aged 20!  Seriously, old people love me because I can chat with them for hours about hospitals and doctors and drug interactions.  My 85 year old grandmother and I are dealing with about the same level of osteoporosis and my grandfather and I both go to the same hematologist for our iron infusions!  The final straw for me, however, is that both my doctor and my husband have suggested that I start drinking Boost or Ensure to help me get nutrients I need and to put on weight.

I understand rationally that this is a very practical suggestion and something that would probably be good for me, but still!  It’s like how I refused to go full mini-van when I had the twins… I got a compact SUV so that I could hang on to some shred of (probably imagined) coolness.  And so, I am refusing to go on a complete old people diet on principle.  I will eat bland and mushy foods and stay away from nuts and all vegetables, but I am drawing the line.  No Boost for me, I am still young, and hip, and funky fresh, or whatever the kids are saying these days.

Ok, yes, I have sort of thrown in the towel when it comes to getting ready.  90% of the time if I am not in yoga pants I am wearing maternity jeans, but comfort and ability to easily crawl on the ground with the toddlers is what matters right now.  And I only wear makeup about twice a month.  Seriously, a few weeks ago, Sebastian and I went to a formal event for Best Buddies and when we were leaving Curly said, “What’s wrong with your eyes?”  I had on eyeshadow, she had just never seen it before!

And I go to bed before 10 almost every night and nap as often as possible during the day.  I blame this one on the fact that I am still healing and anemic, which is true, but I also really just love to sleep.

My body may not be acting it’s age right now, but I REFUSE TO BE OLD YET!

So in order to feel better about my impending age shift to the over 35 bracket, I have decided to ask for your help.  I have been talking a lot lately about Mommies In Need, if you aren’t up to speed, then you can read about it here and here.

Basically I have jumped into a major project of awesomeness by starting a non-profit corporation from the ground up in a very short period of time- let’s see my grandparents do that!  (But if you are reading this Gaga and Gingi, please don’t be offended, I can only hope that I am as cool as you guys when I’m your age!)

For my birthday I am asking for everyone to help support Mommies In Need whatever way you can.  Obviously, money would be amazing (we really need it if we are going to keep going) and you can either send a check to Mommies In Need at PO Box 601562 Dallas, Tx 75360 or donate on our website here, you can use a credit card or PayPal so no excuses!

If you can’t support it financially, I totally understand, but please take a second to share a link to the website at www.mommiesinneed.org on your facebook or twitter or email it to your friends in the hope that someone you know might want to help.  And like us on Facebook at www.facebook.com/mommiesinneed and share the status updates we post there (while you are at it, you can always like this blog’s page too!)  Getting the word out is a huge part of building a charity, and I can’t do that by myself.

And finally if you have some other way that you can help, great!  I am open to ideas and suggestions, and would love to get more people involved with Mommies In Need.  Do you know a business who would like to help us financially or with in-kind donations?  Wonderful!  Do you want to have a garage sale and donate the money to us?  I would heart you forever.  Are you a web design wiz and want to help us spruce up the site?  I seriously need some help on that front since I am deficient in both iron and technology skills.  Are you or do you know someone who needs help caring for their kids in the middle of a major health crisis?  If so, I am so sorry because I hate that anyone else has to go through this, but let me know, we aren’t quite ready to expand yet, but if the right situation came along I would be thrilled for MIN to step in and help.  You can email me about anything related to Mommies In Need at natalie@mommiesinneed.org.

So, you have your request.  I don’t need cards (although if you already send them, thank you!) and I don’t need stuff (although if a certain someone already bought me a spa massage I will not turn it down) but what I do need is support for Mommies In Need.  This organization has given me an incredible sense of purpose and allowed me to find some meaning in all of the craziness I have been going through these past few years.  So feel free to wish me a Happy Birthday on Facebook on December 4, but if you do that, please also consider giving a few moments of your time or a few dollars to a truly worthwhile cause.  And know that with every donation or share of the link that I see I do a little happy dance.  Please help me dance my way all through my birthday week, and know that the one time I don’t feel old is when I’m shaking my groove thang!

**I am clearly still young and hip as evidenced by my timely and relevant turn of a phrase!**

Here is one example of me doing a Happy Dance at my wedding.  Yes, it is almost always awkward and often involves booze!
Here is one example of me doing a Happy Dance at my wedding. Yes, it is almost always awkward and often involves booze!

Oh and if you need any more incentive, If I raise $500 or more for Mommies In Need before December 7 (in the week of my birthday) I will post a truly ridiculous video of myself dancing with the dog taken by my husband when I had no idea the camera is on.  It is fairly humiliating and probably quite hilarious to others, but I am willing to sacrifice my dignity for a good cause!

I Have A Lot Of Feelings

Those of you who have seen me recently probably have no idea, but this has been a tough couple of weeks.  Most of the time I hear that I look great (aw, thanks!) and seem so much better.  And that’s true, I am so much better… except when I’m not.  Unfortunately recovery is not a linear thing, physically it is very up and down, and emotionally…well, I’m sort of like- I don’t even go to this school, “I just have a lot of feelings.”

If you didn't get this reference, I'm not sure we can be friends anymore!
If you didn’t get this reference, I’m not sure we can be friends anymore!

I have been doing well lately- my energy is up, I feel motivated by all of the things I am doing with Mommies In Need and Best Buddies, and I actually physically feel better than I have in a very long time.  So I should be elated and grateful and happy all the time, and I am- a lot- but then I have days when the enormity of what I have been through kind of ties my shoelaces together and trips me up.

I went to my GI doctor last week.  I haven’t seen him since last December when he told me that we could continue trying a variety of treatments for my Ulcerative Colitis, but that he was not hopeful that we would be able to find one that worked and he wanted me to consider having my colon removed. So here I am, about 10 months after getting my colon removed and I can honestly say that without question I am better off without that organ that was making me sick.

Maybe because I was getting progressively worse around the holidays last year, right now, I am able to acutely remember the hours I missed on Thanksgiving and Christmas because I was in the bathroom or lying on my mom’s bed upstairs in so much pain that I could not go down and participate in the celebrations.  So it’s good to know I am better than that.  I am at a place now where, while I have not-so-great days digestively, at least I am not in that kind of pain.

But my visit with the GI was hard.  Because we discussed a bunch of things that made me realize that I actually don’t have a colon.  Which is a big deal.  It means that for the rest of my life, my body will function very differently than everyone else’s and that I will have ongoing worries that others don’t have.  For example, Curly got a stomach bug recently.  Thankfully, I did not get it, which is truly a miracle since she literally vomited in my hair.  For most people, getting a bug or food poisoning would be an unpleasant few days, but if I were to get one, there is a very real chance I would be hospitalized.  Because without a colon, I can easily become dangerously dehydrated in a matter of hours.

I knew all of the possible long-term effects when I went in for the surgery, but they are a lot more real to me now.  At that appointment, my doctor said to me that he was glad we had taken my colon out because if not I would be “extremely sick or dead right now.”

He said it casually but that statement knocked the wind out of me.  I couldn’t even repeat it to my husband when he called to check in after the appointment without crying.  I had to get off the phone suddenly so as to not have a panic attack while driving.  I guess because I am past the “might die” part, my doctor was sort of casual in saying that.  I just don’t think I understood how sick I was.  I spent so much time in the past few years pretending that I was fine when there was this devastating disease tearing up my colon, that I think a part of me actually believed that I was over-reacting and I could just live with it.

What scared me so much about my doctor’s statement was realizing just how much I had convinced myself of this delusion that my UC wasn’t really that bad.  He was worried that if we didn’t take my colon out I COULD DIE.  And yet, days before my colon surgery one of my biggest fears was that they would take it out and do a pathology report and find out there was nothing wrong with it.  That I had taken out a perfectly healthy organ and would have to live with the consequences.

I was clearly nuts- I have since become slightly less nuts.  I had been having horrible bleeding, pain, and pretty much constant diarrhea almost every day for close to 2 years and I worked myself into a frenzy thinking that maybe I was making it all up.  WTF, Natalie?

So now that I am not in immediate danger and my doctor just casually says something like that, I freak a little.  Maybe I had to be a little delusional to get through the last few years.  I know that my scale of “feeling good” is drastically warped.  And even now, I probably seem perfectly healthy to everyone because I am operating at about 80%.  I was operating at like 10-20% for most of the last year, so that jump is pretty significant.  But I am still so anemic that I have to get IV iron infusions once a week, and my digestive system is still healing and very fragile.  I can go out and have fun and feel great for short periods of time but then get so tired that I have to nap because too much activity is truly exhausting for me.  And my thyroid medication is still not balanced, so every time we adjust the dosage my system goes a little wacky.

Which leads me to the thyroid cancer.  For the last 7 or so months I have been operating under the assumption that my thyroid cancer was a thing of the past and I didn’t have to worry about it anymore, the thyroidectomy got it all and all I have to do is go in for a blood test once a year.  I could box that up and put those worries on a shelf and focus on other things.  Then I went to my endocrinologist (again a referring doctor I hadn’t seen since surgery) and she said, “I guess it was benign, huh?”  Um…what?  Turns out she never got the path report from my surgeon and had no idea I had cancer.  Lesson learned, doctors never talk to each other when they should, you need to be on top of that shit.  So I had to wait while she got the report, looked it over, and then told me that the margins were not as clear as she would like them to be and we needed to schedule some tests to see if there is any remaining thyroid tissue and if anything has grown back in the months since surgery.  If so, I will need to get a radioactive iodine treatment.

Now, if I had gotten this news right after I first found out about the cancer, I could have dealt with it and understood that it was a part of my cancer treatment.  But now, I find myself realizing that my cancer has a threat of coming back, so even if I don’t have to get radiation this year, I will have to continue getting an ultrasound every year forever and just praying that it always comes back negative.

Oh and did I mention that this type of radiation treatment has relatively few nasty side effects (which is great) but that if you take it (it comes in pill form) you are RADIOACTIVE for about 10 days.  Like legitimately radioactive, like you can’t be around any humans for the first 5 days and no where near children for the first 10.  Please remember at this point that I have twin 2 year olds.  And you have to throw away all towels and sheets used during that time, and wear plastic gloves when touching anything.  So I would basically have to go into a full quarantine for 10 days.  Again something that would have been good to know SEVEN MONTHS AGO!

I got my blood results back and found that I do have at least a small amount of thyroid tissue left and now have to wait for the results of a scan that I am getting done on Tuesday to find out if I need to turn into a walking Biohazard.  Just after that call, I went into CVS to pick up an RX and when the woman at the counter told me it wasn’t ready I had a full blown meltdown.  Tears streaming down my face, sobbing- oh btw I was getting my anti-depressant, so I guess CVS lady realized just how much I need it! Because sometmes it is those little things that prove to be just too much.  And as a friend recently said to me, “It’s ok, you don’t have to be strong all the time.”  Oh right, that is the whole reason, I started this blog in the first place.  To have a place where I could let it out, to share with the world that even when I seem to be doing great sometimes on the inside I am keeping it together with chewing gum and scotch tape. I have already dealt with too much.  It’s not fair and it’s not fun.  And at that moment I needed my stupid medicine so I could go home, pop a Xanax, and take to my bed for awhile.  I just have a lot of feelings!

On the plus side, Sebastian has said that if I have to get the Radioactive Iodine, he would like me to bite him to see if he gets superpowers.  I’m hoping for the superpower of getting our kids to finally sleep through the night on a regular basis- fingers crossed!

Hanging in The Hospital

I’m sitting in the hospital right now, but for once it’s not for me.  My grandmother, Gaga, is having some health issues and I am here with her.  We are waiting to see if a blockage passes, so I am hoping and praying that she does not need to have surgery, especially since I know just how difficult intestinal surgery can be.

But right now, I’m just sitting here.  She is sleeping and I am hanging out in her room so that there is someone here for her if she needs anything and to help communicate with the doctors when they come in.  I’m also giving my mom a break so she can shower and rest since she was up all night getting Gaga admitted.

And it’s weird, cause I have spent a LOT of time in this hospital, but most of it was in that motorized bed, not next to it.  So the beeps and whirs of the machines, the constant hum of chatter in the hallway, and the ticking of the clock (because for some ridiculous reason apparently the only clocks they can put in hospitals are stupidly loud,) are familiar to me.

Right now a lot of people close to me are going through health issues similar to ones I have dealt with and it’s strange to be seeing it from the other side.  It is also difficult, because even though I am so incredibly grateful that I am (hopefully) past the worst of my health struggles, the memory of that pain is still quite fresh.  So when I see Gaga with an NG tube sucking bile out of her stomach, I cringe for her, cause I hated that thing- like more than I hate Caillou. Which is a lot.

For anyone who has not had the pleasure of being acquainted with an NG tube, it is a long tube that goes through your nose, down the back of your throat and into your stomach and then it sucks up everything in your stomach and spits it into a container and every once in a while a nurse comes by and dumps out your sludge bucket.  It doesn’t hurt, but it is super annoying, irritating, and generally unpleasant and gross.  Wanna hear one of the most disgusting things ever to happen to me? If not stop reading now…. still here?  Ok, when they yanked the NG tube out, I got nauseous and started puking, as a tube was coming out of my nose and throat, it was unbelievably miserable.  And this was when I was in the hospital for having my colon removed, so my whole abdomen was sliced up.  I have experienced a lot of different types of pain over the past few years, but I can say without a doubt that intensely vomiting after abdominal surgery (which I did after each of the 4 I had) is the worst!

And that brings me to Annie, Annie who inspired me to start Mommies In Need.  She and I spoke the other day and on the bright side, the Mommies In Need nanny we have paired her with is working out beautifully and the whole family is really happy and relieved to have that very necessary help.  But ya’ll (sorry my Texas roots are showing) she is in the worst of it right now.  The nausea, the pain, feeling like everything hurts and you think something must be terribly wrong and then having a Dr say that what you are going through is just a normal part of the healing process.  And you are like, “NORMAL?!!  So having pain so bad you think an alien is about to burst out of your stomach and start tap dancing on the table and then rushing to the ER and needing a morphine drip only to find out it was gas pain is normal?”  Well that sucks.

Unfortunately, going through this stuff just sucks.  And I feel terrible for my friends and family who are suffering right now because I truly know how they feel and I hate that they have to go through it.  But all I can do is sit here and watch Gaga sleep and hold her hand when she needs it.  Or give Annie some words of encouragement and a safe place to express frustration with the healing process and keep working to grow Mommies In Need so that she doesn’t have to worry about her kids during treatment.  And I am happy to do those things because I know just how much it means to have someone by your side in a dreary hospital room, and how much of a blessing it is to have a friend willing to listen, and how vitally important having a nanny was to my recovery and my sanity.  So thank you to all the people that were there for me when I needed it, and thank you God for allowing me to be strong and healthy enough to be here for the ones I love.

Hey, at least when my friends and family get sick they have a hospital/surgery/general health issues pro on hand.  I’m like a one-woman Wikipedia of illness-related crap! With one call I can tell you what to bring for a long hospital stay, give you a reference for an excellent Internist, GI doc, Colon/Rectal Surgeon, General Surgeon, Endocrinologist, Osteoporosis Specialist, Urologist, Physical Therapist, Dermatologist, Hematologist, Oncologist, and Shrink and give you a run down of the pros and cons of just about every pain medicine on the planet!

One Lovely Blog Award

One Lovely Blog Award!
One Lovely Blog Award!

The rules for accepting the award are:

~Thank the person who nominated you for the award.
~Add the One Lovely Blog logo to your post.
~Share 7 facts/or things about yourself.
~Nominate about 15 bloggers you admire and inform nominees by commenting on their blog.

Yay!  I actually got double-nominated, so I have to thank fightlikeagirl333 and momofone2010.  Here are 7 things about me:

  1. I have twin toddlers, Flopsy and Curly.  They are hilarious and awesome and I am pretty sure are already smarter than me.  Example:  Flopsy is having a tantrum wanting to watch TV.  Curly stops her and says “No, Flopsy, that’s not how you do it.  Watch me.”  Then she turns to her father and says, “Daddy, can we watch 5 minutes of TV, pweese!” And then bats her eyelashes at him.  We are in serious trouble!
  2. I have a kind of wacky medical history including Thyroid Cancer, Colon Removal, Hysterectomy, Anxiety and Depression.  Good Times!
  3. I love drinking red wine and binge watching crappy TV shows.  I also believe that TV can be good for kids!
  4. I regularly wear maternity pants even though it has been 2 and 1/2 years since I was pregnant.  Seriously, if you see me wearing jeans, ask to see the waistband.  There is a 90% chance it will be stretchy
  5. My favorite color is purple and my favorite food is carbohydrates.
  6. I used to do improv comedy and was professional actor, and still occasionally do theater.  So whenever my husband doesn’t laugh at my jokes I can tell him that people used to PAY me to be funny!
  7. I started my own charity, Mommies In Need, to help sick moms pay for childcare.  If you want to really make my day, go donate a few buck to our Indegogo campaign to help it get started!

And now for my nominations:

drinksandpositivity.wordpress.com

blessings2savor.wordpress.com

lightthelie.wordpress.com

livingwiththreegirls.wordpress.com

thepersistentplatypus.wordpress.com

beautyfrosting.com

asadsongbetter.com

beretolsen.wordpress.com

discombobulatedmom.wordpress.com

kelzbelzphotography.wordpress.com

tinyhumansrunmylife.wordpress.com

martinisandminivans.com

bestbuddiesblog.wordpress.com

twinfamy.com

mominthemuddle.com

Love to all you guys, keep on writing so I have something to read!

 

Mommies In Need Update- Spoiler Alert It’s A Good One!

I just want to take a quick moment to say I am truly astounded by the outpouring of support I have gotten since my last blog post about starting Mommies In Need.  In a little over a week, we have more than doubled our original goal for helping Annie and her family!!!

I was not sure if I could really do this thing, or if I was just being an (even more) insane person.  But you guys are backing me up and giving me the courage to keep going.  The amount of people who have shared the link, donated, or offered to help in some other way is incredible.  I think it has spoken to a real need in society. I have heard over and over again when I explain the idea to people, “I never really thought about it, but I don’t know what my family would do if I got that sick.”  Mommies In Need is growing at the rate that it is because it offers a tangible and relatable service to people who are in an unthinkable situation.

So just to keep you in the loop here are just a few things that have actually happened in the last week:

We have the beginnings of the 501(c)(3) paperwork done.  This is an extremely tedious process but I am hoping to have at the very least the articles of incorporation submitted to the state by tomorrow.   Once that goes through, I can get the rest of the forms to the IRS in the next few weeks.

We have a Secretary and Treasurer for the Board.  We will be having board meetings and voting on measures and all sorts of official stuff!

We have a Mommies In Need bank account where all of your incredibly generous donations are going.  And by bank account, I mean real bank account, not a bag with a dollar sign on it under a loose floorboard.

We now have a PO Box.  Send us something!  I recommend a check made out to Mommies In Need, but you could also send Annie a letter or card of encouragement, a sonnet you write about how generally awesome I am, or whatever else you feel inspired to pass along.  Our new address is:  Mommies In Need, PO Box 601562 Dallas, Tx 75360.

And most importantly, we have raised enough money to fund a Nannie for Annie (sounds like a Dr. Seuss book) for over 2 months!!!  I am amazed and overwhelmed by the generosity and enthusiasm that everyone has shown.

So please continue to donate or have people send checks to our new address.  You can also send me an email at supercrazymommy@gmail.com if there is some other way you want to get involved or just want to be on the mailing list for any and all Mommies In Need info.

I am so excited that we are able to help Annie and hopefully many more mommies like her in the future.  Thank you to all of you for listening, supporting, and sharing! And for jumping on board this crazy train with me!

Jumping for joy!  I'm not currently on the Great Wall of China but you get the idea!
Jumping for joy! I’m not currently on the Great Wall of China but you get the idea!

I’m In To Hire- and You Should Be Too

Some of you may have heard of #ImInToHire.  For those of you who have no idea what I’m talking about you can click here.  Basically, Best Buddies is working on a program to get employers to pledge to hire people with intellectual and developmental disabilities (IDD.)  When I first heard of this I thought it sounded like a great idea, but now it has become a lot more important to me.  Why?

Because I made a new friend this weekend and her name is Annemarie and she is awesome and inspiring and an amazing writer.  And she has Down Syndrome.  I spent the whole day with her Saturday working on her speech for the Best Buddies Ambassador Program, where the Buddies learn public speaking so that they can help raise awareness for people with IDD by speaking at and attending events.  In essence to be an Ambassador for the program.  Hence the name…anyway…

I have written previously about another experience with Best Buddies that you can read here.  But today I want to really focus on just how much we as a society are missing when we don’t see all of the positive contributions that people with IDD can add to this world.  Part of the problem is that many of us don’t have any regular interactions with people like Annemarie.  Because 85% of people with developmental disabilities do not have a paid community job.  Let’s think about that for a moment.  85%.  And that is not because they are lazy or not looking.  I spoke to one very smart and articulate man who has been actively searching for a job for over a year.

Do you know what Annemarie said was one of her biggest goals in life?  Independence.  She wants to be able to be a part of the community just like the rest of us.  Who provides a service and gets paid for her work.  But it’s difficult, because when a person with Down Syndrome or Autism or Cerebral Palsy goes in for an interview, they are competing against people who don’t have a disability.  Even if they are completely capable of doing that job, they are at an automatic disadvantage.  Maybe their speech is a little difficult to understand, or they don’t make eye contact the way others do, or they just look different.  And the person doing the interview thinks, well, it would just be easier to hire the person without an IDD.  It’s not automatic for most people, we need to make an active effort at inclusion.

That is what is so cool about the I’m In To Hire program.  Employers pledge to try and find job opportunities that would be appropriate for individuals with IDD.  One of the speeches I heard on Saturday was from a young man who works at a gym.  He said that he greets people and folds towels and that every day he feels proud because his friends can see him working.  He is really happy to have that job, it makes him feel accepted and like he is a full member of the community.  Helping someone find self confidence and pride in themselves is an amazing thing.

That gym employer could have chosen to hire a college student without IDD who maybe was doing this for a side job and didn’t really care too much about it.  But instead they hired an intelligent, friendly, outgoing young man who happens to have a disability.  And that job gives meaning to his life in a very profound way.

So if you have a company, maybe spend a minute thinking about what positions you have that would be well suited to someone with IDD.  And then perhaps reach out to an organization like Best Buddies and ask them to recommend a few candidates who are looking for jobs in your area and would be a good fit for your needs. Or talk to your HR department and see if you can help facilitate the program at your workplace.

People with IDD are just that, people.  With individual hopes and dreams, and so much to offer to this world.  Please join with me in trying to help make our society one that welcomes them and their unique abilities and enthusiasm. And Annemarie, when you graduate if you are looking for a job, I’m hoping Mommies In Need will grow to the point that I can bring you or someone like you on to help.  Because I can say loudly and with great pride that I’m In To Hire!

Me and my new Buddy Annemarie!
Me and my new Buddy Annemarie!

My Why

I have said on this blog before that I no longer believe that everything happens for a reason.  Some of you may have heard me articulate this as “I don’t believe that God gives us the bad stuff.”  I just can’t wrap my head around a world where the difficult path that I have been down was chosen for me, that I have suffered so much because I am uniquely strong enough to bear it.  I think we have a lot more choice than that, and sometimes shit just happens.  And it’s not fair, and it’s not because I deserved it, or because I needed it to grow as a person.  I am just someone who for a long time couldn’t catch a break.  And I went through a long string of crazy health problems and am just now coming out the other side of it.

What I do believe is that people who are dealt a rough hand have the option to bet on it anyway.  We don’t always have the ability to change the circumstances that come into our lives, but we can choose to keep going, to get out of bed every day (or most days) and hope for the best.  And if we are lucky, we can find a way to turn those things into something great.  And sometimes God, or The Universe, or Completely Random Chance (whatever you want to name it that makes sense to you) lets things line up in a way that all that crap makes sense and has a purpose and can be turned into something beautiful.

This is more philosophical than I usually get here, but I need to explain to everyone why all of the sudden I have become (even more of) a crazy person and decided to take on a huge project when I am not quite fully functional myself.  I started a charity.  Like yesterday.  With no real plan in place, just flying by the seat of my yoga pants and praying that it turns out ok.

I have actually been thinking about starting this since I first got sick.  Because I always knew how fortunate I was that with the help of our families we could afford to hire a nanny to get me through the worst of it.  And I found Wonder J– as I have written before she has been amazing for our family.  I always knew that I could focus on taking care of myself and be there for my girls as much as possible, but have confidence that if I hit a wall and had to go lay down, or got dizzy, or was about to poop my pants (sorry for the TMI but we are talking colon removal here!) my girls were in good hands.   I can’t even begin to describe how much I needed this help, I am not exaggerating when I say I am not sure I could have gotten through the last few years without a nanny.  Cause stay at home mommies don’t get sick days.  Ever.  Not if you have a cold and not if you have cancer.

I never thought I would get so sick I couldn't even lift ONE baby!
I never thought I would get so sick I couldn’t even lift ONE baby!

Stay at home mommies of young kids don’t have disability insurance and most of us don’t have any sort of childcare set up.  Maybe a MDO or a couple of hours of babysitting here and there.  Not enough to go to seven doctor’s appointments a week.  Or be in the hospital for 20 days in a year.  Or go through invasive treatments and surgeries that leave you feeling like warmed-up death.  And if you can’t afford to hire help than at best you have tons of different people volunteering a few hours here and there, having to explain your kids schedule to every person that helps you, feeling guilty that there is no consistency in the kids lives, and at worst have to miss vital appointments or treatments because you can’t find someone to watch your kid with strep.  Who, by the way, you shouldn’t even be near because you have a severely compromised immune system.  Not a great situation, huh?

So when I heard that my friend Annie (who has two darling kids and not-so-cute colon cancer) was back in the hospital following surgical complications, and did not have and could not afford full time help to get her through the rest of her surgeries and chemo, I knew I HAD to do something.  See, a few years ago, I would have heard her story and thought, “Aww that sucks, she’s so nice, this is going to be really hard for her.”  But now I hear that story and say “NO!!! You can’t do this by yourself, if you can’t get help then I will get it for you.”  And then the real miracle happened.  Our previous nanny (who left only because she got a full time job, we loved her) texted me and said she was looking for a new family.  And I thought, “Hello, all I have to do is put these two together, raise a bunch of money, and I’m off.”  So Mommies In Need was born.

But can’t I just raise money for another charity that does this?  Nope.  If there is one, I couldn’t find it.  And my vision is very specific.  I want to not only fund the nannies for sick moms, but also provide them with someone who is vetted, background checked, and stamped with the SuperCrazy Mommy seal of approval (as in I have/would leave my own kids with them.)  Because when you are in pain is not the time to have to do interviews and reference checks and try to find the right person.  My long term goal is that if I get a call for a mommy who just got a diagnosis I can move fast and have a reliable nanny to her in a few days.

I know that there is a daunting amount of work ahead of me, I just opened the new bank account and am starting all the 501(c)(3) paperwork, and I actually do have “Grand Plans” for the future.  But already I am amazed at the people who have stepped forward and said they think this is important and want to be a part of it.   I am feeling grateful that everything came together at the right time for me to get off my ass and actually start this thing.  So is it crazy?  Yes.  Is it Super Crazy? Yes!  But I am doing this because I feel like I finally found the good that I can pull out of all the shit I have been through.  This non-profit is my silver lining, my reason for all my difficulties.  I actually have an answer now to the question that plagued me everytime I got hit with another diagnosis or huge crisis.

In Mommies In Need I found my “Why?”

 

*If this blog has ever spoken to you, or made you laugh, or given your day a little lift, please consider donating to MommiesInNeed.  If you can’t donate, please check out the fundraising page and share it on any media platform you can.  Plus as you will see on the campaign page, if you donate $100 or more I’ll Be Your Best Friend! You can also like me on Facebook for more updates on this project.