Just Keep Swimming

My family went to see Finding Dory last weekend, and besides being an adorable film that all of us loved (and that made me sob like a baby being sleep-trained,) it was also a good reminder for me about where I am in my life right now.

dory

I want to be able to say that everything is wonderful, that my health is great and that life is nothing but joy.  Sometimes I feel like that is what people want and expect from me.  I mean I am a Cancer Survivor!  I have lived through so much, it’s kind of time for me to be over all my health issues and emotional baggage. Now I realize that most of you probably don’t actually think this, but it’s what the not-so-nice voices in my head tell me. There’s also a lot of “Quit whining, at least you’re not dying,” and “Stop being so lazy,” that last one may be surprising to those of you that think that someone who runs a non-profit and has twin 4-year-olds has the right to relax every once in a while.  But anyone who also battles depression and/or a really harsh inner critic understands that those voices aren’t rational and that they are extremely hard to ignore.  Part of my well-developed coping mechanism system is that I keep myself busy doing things, I keep creating, I keep moving- because sitting still is dangerous for me.

I don’t know if depression is something you ever really “get over.” For me, while I’m not in the dark hole of major depression that I have known, there is still a certain heaviness around my heart that feels frighteningly close.  When the tragedy in Orlando happened I spent days weeping.  Breaking down into sobs at unexpected moments. Because I have such close ties with the LGBTQ community. Because there were years of my life that I spent dancing my nights away in gay clubs and I understand how much of a safe space that is supposed to be.  For some people, especially in conservative areas, a club or bar is the ONLY place that they can truly be themselves.  Imagine how exhausting that would be.  To constantly be pretending, hiding yourself from the world and to have the one place that gave you relief from that pressure be violated in such a horrific way.

That same week I also got some test results that have left me in a pretty raw emotional state.  My anemia, which I have been dealing with ever since my colon surgeries in 2014 has been getting worse.  My numbers suddenly dropped alarmingly so the doctors decided to do an Endoscopy and Flex Sig (like a colonoscopy for a person with no colon) to check for bleeding.  I was hoping that they would find the bleeding and be able to zap it right then and there and the problem would be solved.  Unfortunately, they did find the bleeding, but the area was too large and too fragile to cauterize.  Basically my pouch is just fine but the area around where they reconnected my small intestine has large bleeding ulcers and the tissue is extremely sensitive, so trying to stop the bleeding could actually wind up making it worse.

My GI did some biopsies and said he would talk to my surgeon and get back to me. The biopsies came back negative for celiac (duh, the only thing I eat that doesn’t bother my body is gluten) and Chrons (thank God, because if I had my colon removed because of Ulcerative Colitis and then developed Chrons too I would have totally lost my mind!) So that’s good, but it still leaves me with significant internal bleeding that “has no medical solution.” The current plan is to keep dumping iron into my system, check my blood more regularly to see exactly how much I am loosing and hope that I eventually just get better on my own.

Um…yeah.  That doesn’t really sit too well with me.  Oh, and by the way when I asked about a time frame for my intestines just “healing themselves” the GI said maybe years.  Like 2-5 years or more.  So I’m just going to be bleeding internally, which leaves me feeling tired and kind of crappy, and have to go get iron by IV every 2-3 weeks potentially forever.

I have a pretty good amount of perspective, and what I am dealing with now is absolutely nothing compared to the kind of daily agony I was in a few years ago.  And I guess I know that my body does not, and will not ever function like that of someone with all their organs.  And I have to learn to deal with that- but I feel I have a right to be a little pissy about it now and then.

And sometimes it makes me really angry, or really sad. Last Tuesday, I had just talked to the doctor and started crying when we got off the phone.  I could not stop but I had to go get the kids from summer camp.  So I walked into their school crying, and signed them out crying, and buckled them into the car crying, and then got home and put on Annie and watched it with them until I cried myself out and passed out on the couch.

At least my girls are growing up knowing that mom has feelings too. When they asked why I was crying I just said “because I’m really sad. You know how when you are sad you cry?” And they accepted that answer and gave me hugs and cuddles and  didn’t fight while I slept next to them.

But through all this I do see how lucky I am.  Lucky that I have friends who call me and offer to watch my kids after they see me crying uncontrollably at school pick-up.  Lucky that my girls have amazing emotional intelligence for their young age and are able to be gentle with me when I need it.  Lucky that I have a husband who will let me sob in his arms even when I don’t have the words to explain what feels so deeply wrong.

So what does all this have to do with Finding Dory?  Her mantra, one that was present in the first movie but gets a meaningful explanation in the sequel is “Just Keep Swimming.”  Whenever things get bad for her, when she forgets and is terrified, she always goes back to a little song she sings to herself, “Just keep swimming, swimming, swimming…” And every time, if she can just calm down enough to keep swimming something will happen that will lead her to a better place.

I’m adopting this as my motto too.  Because I have been through a lot, like A LOT, and when people ask how I got through it I usually answer, “I just decided to keep going.” or “I got out of bed every day (well most days) and prayed that there would be another day and that it would be better.”  But Dory’s line is simple and effective.  The opposite of swimming is drowning and that is something I refuse to do.

So when I make myself so busy that I don’t have time to think, I’m swimming.  When my body is so fatigued that I can’t make it through a day without napping and yet I still decide to create an entire summer camp program in just a few weeks [seriously check out Camp Kindness, it is really cool!]- that’s me swimming.  And sometimes if I don’t return your call or email or text, it’s not because I don’t appreciate the love you are showing me, it’s because at that moment I am unable to discuss what is going on in my life without missing a few strokes.

Some days I am barely keeping my head above water with a frantic doggie-paddle, and some times I am gliding gracefully and joyfully through the water with ease.  But no matter where I am on the about-to-loose it scale that day, I will trust that I am not alone, and that I am having a tough time right now, but there will be an easier season eventually if I just keep swimming.

 

 

 

 

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Grace

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This year I am giving up self-criticism for Lent.  I mean, it can’t be caffeine, wine is obviously out of the question, and my Jamberry addiction is really just in it’s infancy, so I have to find something…

I thought maybe I could use this season as a jump start to a new mental space where I give myself a bit of a break.  In my last post I wrote about how I don’t care what other people think of me anymore, and that’s true.  But I am still pretty harsh in what I think of myself.

I hold myself to ridiculous standards.  Clearly not when it comes to keeping my house clean or washing my hair more than once a week.  But I ruthlessly criticize myself for not being able to truly appreciate every moment with my kids while they are little and adorable, I mean I should be grateful that I am alive to be a part of their childhoods and frustrated at myself when I don’t feel that loving glow every second of the day.  I project forward to when they are pain-in-the ass teenagers and I have turned into Beverly Goldberg and am clinging to them demanding “snuggies” and that I will regret that I didn’t cherish this time more. And if I slip and snap at one of the kids when I have asked them the same f-ing question 37 times and they still refuse to answer me, or if I yell “I don’t care, just figure it out” through the bathroom door while two three year olds are screaming that they need me, I beat myself up pretty badly about that later.

And it’s funny because my absolute favorite about being a Christian (yes, I’m out of the closet now, I love me some Jesus) is the concept of Grace.  That you do nothing to earn it and there is no way to loose it. That is some pretty amazing stuff. Haha Amazing Grace, I totally wrote that not intending the pun but I’m gonna leave it here anyway.

And I am really good, like really good, at giving Grace.  I don’t just give second or third, but 27th chances.  I am able to look at someone who is being a total asshole and give him the benefit of the doubt that maybe his dog just died or he has some chronic pain that is not visible to the eye but eating away at his patience.  Because I have been there, I have been someone who fell to pieces when my husband asked me to make a reservation because “it was all just too much!!!!”  So I am very generous in my ability to forgive.

Except when it comes to me.  I hold grudges against myself for things I did in the third grade.  I’m not kidding.  I obsess over the hurtful comments I made years ago that the person I hurt probably doesn’t even remember. These are things that I would easily forgive in another person, but refuse to do so for myself.

So that’s what I’m giving up this Lent.  I am giving up (or going to try to give up) judging myself so harshly.  I mean, I’m pretty great.  I made it through the past four years when life kept dealing me blow after blow.  And I survived.  And I thrived.  I still have hope, and optimism, and more faith than I ever did.  And grace.  So I am going to start using a little bit of that on myself.

My “Bad” Day

It could have been a bad day. For most people it would probably qualify in the seriously crappy day category…I even planned it that way.

See, I knew that I needed to have a wart frozen off/dug out at the dermatologist, and a filling, and an iron infusion before the end of the year. The iron infusions involve several hours, blood work, an iv, and inevitable abdominal cramping for the rest of the day- I know because I get them every month.

So I just decided eff it, I’m gonna have my supernanny take the kids and plan for a crap-tastic day of doctors and dentists and generally unpleasant and painful procedures.

I figured that if I planned for the day to be terrible then I wouldn’t be disappointed when it turned out that way.

And yes- the wart thing hurt, and the doctor had to apologize for having to dig so deep in my skin. But she was really nice about it!

And at the dentist he decided the cavity was shallow enough that he wouldn’t numb me. We discovered he was wrong when he touched a nerve with the drill and my whole body jumped. But he numbed me up after that and I got through it fine.

And that’s all just life. Those are normal people problems.

Because I planned for it, I wasn’t annoyed by all the stuff I knew was going to suck about the day. So I had space to not loose my mind when my three and a half year old decided it would be a great day to cut her own bangs and spread her hair out all over the floor.

And I was actually in a fantastic mood all day. When the nurse told me I didn’t have to do blood work this time, I almost high-fived her. It’s a good thing I stopped myself because as anyone who knows me well can attest, I am an extremely awkward high-fiver.

And then I sat down to get my iron and struck up a conversation with the woman getting chemo next to me. She asked how often I am in there and I told her “once a month, probably forever.” She said that she was just getting maintenance too- because she was past the point of a cure. I told her how sorry I was and she said, “You just decide to keep on going.”

Yep. That’s it exactly. So many people have asked me how I got through the past few years with everything I have been through. And I usually make some sort of joke abut Xanax. But she summed it up perfectly, you just decide to keep on going. And then you do. You do whatever you can that day, and then the next day, and then the next. She made me realize how lucky I truly am that my story is on an upswing. We laughed and cried together and I left there feeling grateful. For Life.

For this messy, painful, beautiful, awesome, whirlwind that is my life.

And if yesterday was what “bad” looks like to me now, then bring it on. Because I’ve learned something about myself; that no matter what happens, every day I will make that choice to keep on going.

Mitzvah Therapy

Yesterday was an amazing day.  A Hallelujah, sing in the car, have a super-cool dance party with the hubs and kids sort of a day.  Yesterday I got some incredible news- my Osteoporosis has not only stopped getting worse, it may actually be reversing itself!!!!  I also had a great meeting with the wonderful folks at Cancer Support Community of North Texas.  The work they do for people affected by and living with cancer is unbelievable.  If you or anyone you know are dealing with cancer, please check them out as a resource.  They have support groups, informational meetings, kid’s nights, social workers, counselors- you name it, all FREE to members (but that actually cost a lot of money, so if you have some extra cash laying around you might want to throw it their way!)

At this meeting I got invaluable ideas and support for Mommies In Need, and I also came away from it with my favorite new term: “Mitzvah Therapy”

When I explained the whole backstory of Mommies In Need coming from my struggles and said that it has really been a huge source of comfort and joy to me in my recovery, one of the women in the meeting said that was an example of Mitzvah Therapy.  In its casual usage a “Mitzvah” is an act of kindness that you do for a person without expecting anything in return.

When I got home I googled the term and found this video:

http://storiesofchangeandpossibility.com/tag/mitzvah-therapy/

The story told here made me cry in it’s simplicity and beauty.  In it, Bill O’Hanlon describes what the late Dr. Sol Gordon coined “Mitzvah Therapy” and tells a lovely story about how it changed one woman’s life.  Now, I am all for psychotherapy- I’m not canceling those appointments anytime soon!  But as he says in the video, psychotherapy is all about you and Mitzvah Therapy is all about giving.

And I have a confession to make here, I have kind of become a giving junkie.  Seriously, I am always looking around for my next fix.  I actually keep some of it a secret (I guess until now) from my family because it seems a little crazy- well, crazier than usual.  If I have extra cash I pay for the parking of the person behind me whenever I leave the hospital lot- someone did that for me once and it made me smile on a not-so-good diagnosis day!  I have blessing bags in my car with protein bars, tissues, soap, etc. to give to any homeless people I see.  We did a diaper drive for the twins birthday and I got a huge high when the woman picking up the donations was so excited about everything she was loading in the car to distribute to underserved families.  I even carry around $5 gift cards to Starbucks that I sometimes give to random moms when I see them carting 3 kids through Target or dealing with a toddler having a stage 5 meltdown.  I hand it over with just a few words, “One mom to another, you probably need to treat yourself” and walk away.

I tell you this, but please don’t go on about how awesome I am or anything like that.  I mean, I’m pretty cool, don’t get me wrong, but I am not writing this for compliments!  See for me, those acts are actually pretty selfish, because I get such a huge boost of happiness and even self-confidence from doing those things.  When I walk away from that mom who has a little light of hope in her eyes that someone gets what she is going through, I feel pretty darn good about myself.  And that feeling, really helps me get through the day sometimes.  I have been forced to deal with a lot in the past few years- see A Brief Timeline of Crazy.  And there are days when I can get pretty depressed or anxious or just plain mad that all of those crazy and terrible things happened to me.

And I need my psychotherapy to work on the root of that depression and anxiety and anger, it’s not something that just goes away when you ignore it- believe me, I tried that and wound up with panic attacks (which I really don’t recommend!) But for me, when I get in a dark place, being alone and thinking about myself is a surefire way to go even darker.  And the quickest fix? A little Mitzvah Therapy!

So maybe I have taken this to an extreme by starting my own non-profit, but seriously, try to insert a little random kindness into the days you are feeling like crap.  It’s hard to be grumpy when you are giving joy to someone else.  Even just holding the door open for someone with a genuine smile on your face, rather than grudgingly doing it with no eye contact can brighten a person’s day just a bit.

Ugh, sorry if this whole post is a little Pollyanna, but I am coasting on a major high right now.  Mommies In Need has officially accepted TWO new families to help!  I am overwhelmed by the amount of support that this cause has gotten in such a short amount of time.  Don’t get me wrong, my heart hurts for the women we are helping.  I have been in situations like theirs and I know the kind of rough road they are going down.  But I am filled with joy knowing that Mommies In Need is taking a huge burden off of them by making sure their children are well taken care of.

If you feel like doing a little Mitzvah Therapy of your own today, please consider donating to our campaign to support these Mommies in their journeys through cancer.

The kids of the first Mommies In Need family.  Knowing we helped them have stability while their mom was sick is the ultimate Mitzvah Therapy!
The kids of the first Mommies In Need family. Knowing we helped them have stability while their mom was sick is the ultimate Mitzvah Therapy!

Lucky to be Annoyed

I’m in the middle of a 24 hour urine test today for my Osteoporosis. It will help give a progress report to my Mineral Metabolism specialist about how much calcium I am losing and what course of treatment we should pursue.  I’m hoping for a “just keep doing what we’re doing” response since all of the Osteoporosis drugs have some pretty serious side effects, especially for someone as young as me.  (Thank you Prednisone for giving me Grandma bones at 35!)

And this test is super annoying, because I have to collect all my urine for 24 hours and store it in a jar in my fridge.  Then I have to bring it into the clinic tomorrow after fasting for 12 hours (that means no coffee in the morning- I may be a danger on the roads) and get huge amounts of bloodwork.  So if you are someone like me who pees every 5 seconds, you basically can’t leave the house unless you want to carry a little mini pee jar around in your purse.  Plus my in-laws are in town so I had to be all “please don’t touch the orange jug in the fridge, it’s full of pee.”

Flopsy has pink eye and ANOTHER ear infection.  My Uncle, who usually takes our dog to play with his during the days, has been recovering from surgery- so my dog’s constant barking is driving me up the proverbial wall. My to-do list seems to be multiplying on it’s own and no matter how many things I cross off, it just keeps getting longer.  And we are transitioning the twins to big girl beds, which means they are crappy sleepers again and it takes roughly 800 hours to get them to go to sleep each night.

I was pouring my pee into a jar for the fifth time today and feeling extremely annoyed when I stopped and laughed and realized for a moment just how lucky I am.  I am so happy to be at a place in my recovery when my treatments, symptoms, and diagnostic tests are merely annoying to me.  This time last year I barely noticed when I had to do the urine test because I was so sick and in so much pain that I wasn’t leaving the house anyway.  And I wasn’t frustrated with my dog or my kids or my to-do list because I was completely incapable of doing anything.  I was in survival mode: trying to manage my pain, discomfort, and depression just to get through the day.

Even though I still have rough days where I am clutching my heating pad with wretched cramps for 6 hours because I accidentally ate a vegetable, if I step back and look at it I am truly grateful.  Because now I am in a place when every day is not full of pain anymore.  Life is not always easy, but it is livable.  And I have hope that it will continue getting better.  I get extremely frustrated with setbacks in my health, and even though I understand rationally that I have to be patient with my body because healing (especially from as much trauma as I have been through) is not a linear process, I don’t wanna.  I am so over being sick and just want to be “normal” again.  I am working on being kind to myself and coming to terms with the fact that like it or not I am missing 3 major organs now and my body will never function the way it did before I got sick.  Fundamentally I don’t trust my body anymore because so much has gone wrong with it in such a short time. 

But I am working on that too.  I am just starting to have a glimmer of confidence that eventually I will figure out this body and become comfortable  with my new normal.  It might not be on my timeline but I think it will eventually happen, and that’s a far cry from the days when I could not see any sign that I would ever feel good again. 

I have a friend who was recently diagnosed with breast cancer and my friend Annie has just finished her chemo and is in the middle of that intense healing process.  We are also opening up for applications for a new family to help with Mommies In Need.  So I am hearing from people who are in that really dark and difficult place where I was hanging out a year ago.  And my heart hurts for them.  Because being really sick sucks.  And it sucks for a long time.  But if I can do anything for the people that are in that place of intense suffering right now, maybe it is to be a little shred of hope that eventually it will get better.   

I am so grateful to be able to get down on the floor to play with my kids again. And I make an excellent sticker model!!
I am so grateful to be able to get down on the floor to play with my kids again. And I make an excellent sticker model!!

Maybe one day they will find themselves being annoyed by little daily tasks and laugh with joy because they realize that they are actually able to do those tasks again.  They will realize that annoyance is actually a blessing because it means they are past the point where being sick consumed their entire lives. That perhaps everything they went through lead them to a life they never thought they would have but are profoundly grateful for.

Now if you will excuse me I have to go pee into a jar.

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 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!

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!

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!) Flopsy and Curly 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.

 

A Moment of Gratitude

I rant a little (or a lot) on this blog.  I talk about the crazy things that are going on in my life and how difficult it has been to deal with it all.  I have talked about my anxiety, my cancer, my miscarriage, my disordered eating, and my surgeries, in addition to the general insanity of raising twin toddlers.  If you want to get caught up quickly you can visit A Brief Timeline of Crazy.  And while I have just begun mining the things I want to vent about and get off my chest, I feel the need to pause for a minute and say that despite all of that I never forget that I have also been amazingly blessed.  I can’t say anymore that I believe that “everything happens for a reason,” but I do believe that if you try, you can take the bad that happens to you and make something beautiful out of it.  For me that something is a new appreciation of the good things in my life, as well as the ability to be there for others who are going through a difficult time.  So here is a list of 10 things for which I will be eternally grateful:

  1. Flopsy and Curly- more than anything else they have been my reason for getting out of bed and my motivation to keep going no matter how crappy I felt.  They are awesome and hilarious and they love tutus, purple, and sparkly things (just like mommy!)  They were the worst sleeping babies in the history of the world, but I am incredibly thankful that they are relatively even-tempered toddlers.  They play really well with each other about 75% of the time, which is pretty good for 2 1/2 and every single day they do something that stops me in my tracks because it is so cute, or sweet, or smart, or funny and I think, “I am the luckiest person in the world that I get to spend my days with these two amazing little people.”  Like when Curly put her hand on my cheek and looked into my eyes and said, “You’re my sweet girl.”  Or when Curly was getting frustrated with putting on her own shoes and Flopsy said, “I’ll help you” and then put Curly’s shoes on for her.  Or yesterday, when they were playing on the swings and taking turns sitting on each other’s lap and swinging together.  I seriously almost had a stroke from cuteness.
  2. Sebastian- My husband is incredible.  Truly, it makes me mad sometimes because I can’t even complain about him when I get together with a bunch of other moms.  He helps around the house, gets up in the middle of the night with the kids when I’m not feeling well, is a loving and devoted dad, encourages me to take “me” time or go out with friends when I can, and managed to pick up all the extra work I could not do this past year when I was really sick.    He also has to put up with much more of my crazy than anyone else and somehow still loves me.  The most annoying thing about him is that he is almost always right.  Please don’t tell him I said that!
  3. My Family- By this I mean my parents, siblings, grandparents, and also Sebastian’s family who have been wonderful through all of our turmoil.  I seriously don’t know how we would have survived the past few years without the family support we have had.  They have gathered around us like a giant protective hugging net that has kept us from falling- yes a hugging net, I don’t know what that is either but I’m sticking with it.
  4. My Friends- Even those who I have not talked to on a regular basis in the past years have come out of the woodwork to support me.  Especially since I started this blog and actually let people in to the realities of what was going on with my life, I have been showered with love from my friends.
  5. Wonder J (Our Nanny)- I have a whole post dedicated to her, but knowing that my kids are in such good hands has taken a ton of mommy guilt off my shoulders!
  6. Dr. Awesome (My Therapist)- she helps me keep the crazy at bay and gives me Xanax.  ‘Nuff Said.
  7. That I Had Twins- sure, having 2 babies at once was front loaded with difficulty, but when I got the scary news that my uterus had been removed to save my life, I was devastated, but not nearly as much as I would have been if I hadn’t had two darling babies to go home to.  I know that my family is perfect and complete.  Plus, I don’t get a period anymore- can’t say that I miss that!
  8. The Body Scan that Found my Cancer- it was horrible timing, but I do realize how lucky I am that a random scan before surgery found that lump and I was able to have it removed long before I ever showed symptoms.  Otherwise, that little ball of yuck could have kept growing for a long time and put me in a much worse situation.
  9. Our Financial Security- I am immensely grateful that we had good insurance and the ability to get through these years without the crippling debt that chronic illness and multiple surgeries can bring to a family.  Sure, I would much rather have taken an awesome vacation than spend 20 days in the hospital this year, but we didn’t have to choose between paying for my medicines and paying for food.  I do realize how very lucky I am for that.
  10. This Blog- I only go to therapy once a week, but I can write here whenever I want!  It has given me a sense of purpose, a way to express myself, and an outlet for the whirling dervish of thoughts that are constantly going in my head.  It has allowed me to be honest in a way I have never been before.  I am very good at putting up a front of being fine when I am actually far from it. It has been so helpful and freeing to me to have a place to let down my guard, to show the mess I have going on inside, and to advertise to the world how NOT perfect I am.

I started thinking that I needed to write this because I have several friends in crisis right now, and I constantly get people saying to me, “Well, I guess I shouldn’t complain.  It’s not as bad as what you’ve been through.”  I would like to state right now for the record- that is total BS.  If you are dealing with pain, difficulty, or trouble in your life, that is yours and you have every right to be upset about it.  A dear friend of mine who has been through cancer, the loss of her mom, and many other struggles said something to me that I will never forget.  I was saying essentially the same thing to her, that I shouldn’t complain because it could be much worse.  And she said, “If that helps you right now, then use it.  If it doesn’t, don’t!”  I love that thought.  Sometimes you need to wallow in your grief or pain or difficulty to get through it.  And sometimes you need to look at the big picture of the world and be amazed that in the scheme of things your life is actually pretty good.

Right now I feel the need to show my gratitude to the universe that let me get through this horrible time in my life with myself missing a few organs and a little bit of sanity, but mostly intact.  For the first time in a very long time I feel hope.  And that is so beautiful.  I want to say to those out there who are in the midst of a dip in your life when you feel like things will never get better… I have been there.  Like really there, in a pit, thinking that I would never be able to climb out.  And while I am not at the end of my journey of healing (so don’t be surprised when I have ranting posts later about Ulcerative Colitis, or surgeries, or other craziness) I can finally see that glimmer that things are going to be OK.  It is crazy how that snuck up on me.  I didn’t notice I was doing so much better until one day I realized that I could breathe a little easier, that I wasn’t in a constant state of tension waiting for the next of like 40,000 shoes to drop.  And for that spark of hope I am completely awash in gratitude.  Thank you to everyone reading, commenting on, and messaging me about this blog.  You have all helped me to find that spark, thanks for being part of my therapy.  But don’t worry Dr. Awesome, I still need to come to you for my Xanax!

How can I not be grateful for getting to see this?!
How can I not be grateful for getting to see this?!