The time has come- on December 4th I will enter my fifth decade on this planet. Since my husband’s 40th is not until March 2020 he is relishing the next few months because during that time I am a decade older than him. I have tried to explain that is not how it works but to no avail. (He also read a draft of this where I said I was entering my fourth decade and said “I don’t want to freak you out but turning 40 is actually the start of your 5th decade!)
So I’m taking stock of my thirties and it is an understatement to say that a lot has happened!
I survived pain that could easily have broken me. I had 3 organs removed, 6 major surgeries, 5 blood transfusions (give blood if you can,) approximately 26 colonoscopies/ whatever you call a colonoscopy when you don’t have a colon, about 40 nights in the hospital, and more than 150 hours in an infusion chair. I had cancer and then got to claim my identity as a survivor.
I watched all 6 seasons of Gossip Girl while on a lot of pain meds.
I learned what loss really means. I experienced the unimaginable depth of grief- how it can tear you apart and leave a hole in your heart that never really goes away. I lost a baby, a brother, multiple friends, and just a month ago a grandfather.
But the last 10 years also allowed me to experience some of my best moments.
I married a man I love and who continues to be exactly the partner I need in this life.
I experienced the joy of having children and watching them start to turn into little people with their own ideas and talents and attitudes (which are getting ever more sassy!)
I found a faith that has sustained me in a real and meaningful way- a personal relationship with a God who always shows up when I need it most.
I discovered strength I never knew I had and that when it seems impossible to keep going – it’s not. Sometimes all you can do is Just Keep Swimming.
I learned that sometimes when something seams crazy it’s just because no one else has thought of it yet.
I took a leap of faith and acted on a call I felt on my heart to help a friend and it has turned into more than I could have ever dreamed. I have gotten to build something from the ground up and see that thing changing lives and taking on a life of its own. In that, I have also found a career that I am good at and is deeply fulfilling.
I am still learning how to ask for help, but at least I can recognize that I need to do it sometimes!
So that was my thirties… I am a very different person now than I was at 29 and I am glad of it.
I never thought I would be excited for 40, but I am. This next 10 years will probably be Super… and Crazy… and that is my Life (See what I did there?!) And I’m grateful for it.
** If you would like to give me a birthday present, I am asking for donations for Mommies In Need. Since I am working on asking for help – here goes.
I have A LOT more fundraising do to this year to finish out the capital campaign for Annie’s Place at Parkland and raise the operating funds to run this first of its kind drop-in childcare center for patients at a public hospital. I want to make sure that our current in-home program is on solid footing so that as we grow we are able to continue to provide free nannies to our moms who are battling cancer and other major illnesses. Any amount you donate is a huge help and if you can share the campaign even better!! My husband is taking me to Mexico for a few days to celebrate and it would be amazing if I got home on my actual birthday to see that fundraising thermometer full!**
Next Sunday is Mother’s Day… a day when we are supposed to honor moms. Because moms get stuff done. This world functions because of the millions of things that mothers do every single day.
If you have ever read this blog before you probably know a couple of things about me (if you need to catch up you can check out a brief timeline of crazy):
I am a mom to twin 7-year old girls.
I am a Survivor. I have lived through cancer, the removal of way too many organs, depression, panic attacks, so much surgery, and the loss of my 28-year old brother- all in the past seven years.
I started a non-profit organization called Mommies In Need (kind of by accident.)
I really enjoy maternity pants (even when not pregnant,) the use of parentheses, excessive exclamation points, and the Oxford comma!!!
Today I am going to focus on number 3. Short summary of a very long story: just as I was coming out of the worst of my health problems, my friend Annie got diagnosed with colon cancer and needed help with her small kids. I sent a nanny to her and started crowdfunding to pay for it and it wound up turning into Mommies In Need. When I started MIN, it was just me and a couple of people I suckered into being on a board of directors that met on my guest bed while all our kids ran around screaming. For some reference on how this all started, check out My Why.
And last Friday night, just four and a half years later, I found myself on a stage in front of a crowd of 250 people (next to Dale Hansen!!) announcing that Mommies In Need has now provided over 18,000 hours of free childcare to parents going through a health crisis.
Those who know me understand that I am always ready to hop on a stage. I was basically born with “jazz hands.” I routinely embarrass myself in public and online to raise money for MIN (check out our Facebook page to see the time I sang Mamma Mia at Target.)
And yet leading up to Friday I found myself extremely nervous.
Because this thing, this little spark, this call that I felt years ago has grown into something I never could have imagined. Not only are we continuing to develop and expand our successful in-home program, but we have found an innovative way to serve exponentially more families, and those who need it the most.
On Friday we announced publicly for the first time that we would be building a drop-in center at Parkland Hospital to serve the children of patients while they receive necessary medical treatment. We are working with some amazing partners, like The Beck Group and Winstead, PC, who are donating their time and talents to this project.
And for those of you who aren’t familiar with it, Parkland is kind of big deal.
Parkland Health & Hospital System is the safety-net for Dallas County and is there when you need them the most- for the most vulnerable among us and for the most complicated, traumatic injuries and illnesses. And the need is staggering: About 1 million residents in Dallas County are uninsured or on Medicaid and critical trauma patients arrive at their doors every day. It’s innovative approach to care afforded Parkland recognition as one of the top publiclyfunded hospitals in the nation.
And if that previous paragraph looks like I cut and pasted it, that’s because I did. See that is the text of my speech that got cleared by their communications team so I’m sticking to that when I write about it- I have 2 lawyers on my board now!!!
So now you all know where I have been for the last year. When I never responded to your text or email, when I seemed super distracted and ran in everywhere 10 minutes late — oh wait, that’s just me all the time! I haven’t written since December, but it’s not because I didn’t have anything to write about… I had all the things (except time), I just wasn’t able to talk about them yet. But now I can!
This collaboration that we are doing with Parkland is the first of its kind. There have been childcare centers at hospitals for the employees, or even at children’s hospitals to care for siblings… but not a place to care for kids when the parent is the one getting treatment.
We are the first organization to offer free childcare for patients at a public hospital. Or any hospital really. Which is crazy! Because something I have learned in the last 5 years of working in this space is that you cannot address women’s health if childcare is not a part of the picture.
That seems like common sense, right?! Except no one has studied it…until now!
Oh yeah, did I forget to mention that we are also working on a research study? When I say we, I mean Parkland and UT Southwestern Doctors, not just like, me with a clipboard.
And I haven’t even gotten to the big, big, picture part of this thing. We are building this whole center to be something that we can scale and replicate in hospitals throughout North Texas and eventually across the country.
I am so unbelievably excited, and also a little terrified. Because this beautiful thing that I created is growing. And with every day it gets a little bigger, and more self-sufficient, and I am proud, and in awe, and realizing that it is not just mine anymore. It is time for it to venture out into the bigger world.
So this is where I circle back to Mother’s Day… see how I did that? Because MIN is like a child… did I just ruin it by explaining the metaphor?
Anyways…I have always looked up to my mom. I just had no idea how much until I became a mother myself. Before that I didn’t really understand that to be a mom is to have your heart out walking around in the world.
My mother taught me how to love well. And she did it under some pretty difficult circumstances.
She took care of me when I was little by making me a nest on the couch when I was sick (which I do for my girls now), and she took care of me when I was a grown woman with kids of my own who needed her Mommy. My mother spent months going back and forth between helping with my babies during the day and staying at the hospital with me at night. She helped feed, and bathe, and dress me when I was too weak to do it on my own. Not to mention the fact that she was the only person who could perfectly arrange a “nest” of pillows for me to get comfortable in a hospital bed.
Sometimes I get compliments on my resilience. On my ability to turn the worst things in life into a blessing for others. On my kindness. But to quote a late 1980’s PSA, “I learned it from watching you, Mom!”
I have written before about Annie, the mom that I started MIN to help, who sadly passed away in 2018. We are naming our new program “Annie’s Place” in her honor.
When we open Annie’s Place at Parkland, we will have a plaque on the wall that reads:
Mommies In Need was built by moms to care for moms. We celebrate the community of women that make everything possible. We dedicate this place, Annie’s Place, to them.
And the first name on it will be my mom, Connie Howe.
Happy Mommies Day!
** If you would like to honor a mom in your life, you can make a donation here.If you donate $200 or more OR sign up to be a monthly donor of $25 or more, we will inscribe your loved one’s name on the plaque and send a card on your behalf to a designated person with the message:
“In your honor (or in memory of your loved one), a donation has been made to sponsor a child at Annie’s Place at Parkland. This donation will give 8 days of safe and loving care to a child whose mom is getting necessary medical treatment at Parkland. Your name will be inscribed on a plaque that hangs at Annie’s Place that reads:
Mommies In Need was built by moms, to care for moms. We celebrate the community of women who make everything possible. We dedicate this place, Annie’s Place, to them.”
Once you have made your donation, please email firstname.lastname@example.org with the name as you would like it to read on the plaque which will hang in Annie’s Place as well as the address you would like to send the card to if applicable. If you would like the card to be received before Mother’s Day we will need all information emailed by Wednesday May 8- we will continue to send out cards after this, they just might not arrive by Sunday.
We welcome donations in loving memory of someone special to you.**
Now that Christmas is over and we are rapidly approaching a new year, my Facebook feed is constantly asking me to look back at all that has happened in this last rotation of the earth, which for me has been…a lot. The end of 2017 and the first five months of 2018 were pretty much the worst. There was too much death, another major surgery, and most of my time spent feeling sick, exhausted, and legitimately close to a nervous breakdown.
But in the later half of 2018, things have started to turn around for me. It has now been over eight months since my last blood transfusion and/or iron infusion. To put that in perspective, for the year prior to that I was getting them as often as every week. That means my horrible surgery last March with the agonizing recovery actually worked!!!
I am no longer loosing blood at an alarming rate, I am not in pain, and it has been long enough now that I am starting to trust and dare to hope that I am healed. Now I know that my health will always be more complicated than the average person. I will have to get scans and scopes forever. And a stomach bug could easily put me in the hospital. But I might finally get a break from the near constant beat down that my body has been under for the last seven years, and that is a prayer I was not sure would ever be answered. At least not in the way I wanted.
It’s funny, but in the last few months I have gotten the same comment a lot, “You look so healthy!”
At first I wondered if they were just trying to find a kind way to say I have gained a bunch of weight. After all, I have put on a solid 40 pounds since I wrote this post a few years ago. I was reading through my half written drafts on this site (of which there are many) and one of them was called “2014 can kiss my skinny ass!” I changed the title before publishing, but you can read that post here to get an idea of where I was a few years ago at New Year’s. Spoiler alert, it was not great.
While I would no longer describe my ass as skinny, I am definitely in a better emotional and physical place.
So if they weren’t just referencing the fact that there is a bit more of me to love, what did they mean by healthy? I started listening to the other things I heard people saying about me- I have color in my cheeks, I look happier, and I have more energy. I realized that since I moved back to Dallas, I have been pretty consistently sick in one way or another, even if I was trying my best to hide it.
They only knew a Natalie who was in a constant battle with her body. Who went almost four years with barely enough blood to function. Who was fighting crippling panic attacks and depression and who just generally felt crappy a large portion of the time.
What they are seeing now IS more of me, or at least more of the me that has emerged from the shitshow of the last few years. When I wrote Scar Tissue, I said, “I think I am going to like the person who comes out on the other side.” And I do. I am discovering a me who is confident, resilient, has a compassion that comes from having lived through tremendous pain, and who is no longer controlled by anxiety and depression.
I am still grieving, which is different. I get sad because of my losses this past year. My heart hurts when I come across a shirt design like this one and think how much my brother Mark would like it, but then realize that I will never buy him a Christmas present again.
That, though, is not depression. That is the reality of dealing with the death of someone you love. That pain is the reminder that he was real and he was important and that I will probably never stop missing him. I understand now that deep grief doesn’t go away, your life grows around it and it changes into something more bearable.
Depression for me is like looking at the world through a sheet of Plexiglass, everything is distorted and feels far away. And I can gratefully say that is not how I feel these days.
I experience joy, and love, and frustration, and sadness, but they are bright and clear.
As we go into 2019 I feel a kind of hope and excitement that I haven’t been able to access for a long time. The kids are great, my husband is supportive and funny and always there for me, I have an awesome village of family and friends, my mental and physical health are the best that I can remember, and I am gearing up for Mommies In Need to expand in a way that will allow us to help exponentially more people.
So, yeah, I guess I am healthy and it feels pretty damn good. I am ready for 2019 and I can’t wait to share it with you!
I’m over it. I want to be able to write witty blog posts about the antics of my hilarious children. I want to complain about normal mom problems, like the Halloween Hangover (the struggle is real!) What I don’t want to be doing is writing yet another blog post about my ongoing health problems, and yet here I am.
It is easier for me to have a blog that people can read to keep up with my saga so I don’t have to explain it a thousand times. I love talking to people, I just don’t love always talking about my crappy health. And I know that the people who love me (and not to brag or anything, but there are a lot of you) are just worried and want to see how I am doing. I wish the answer was that I am great, but the truth is a lot more complicated.
Some things are great- my girls are four and a half now, and although they have their moments, in general I am loving this age. They are cute and funny and still think I am cool, but are old enough to entertain themselves sometimes. My husband is working hours that both of us hate, but there is never a moment I have any doubt that he is my perfect partner in this nutty life. Our new apartment is great, and we are loving a break from the stress of home ownership (no more lawn maintenance and when something breaks we just call the building to fix it!!)
Mommies In Need is growing beautifully and we just accepted our 17th family, and are about to celebrate our 2 year anniversary, and I am loving my new part-time job at my dad’s company (I get to talk to adults! And go to the bathroom by myself!)
And yet I was hospitalized this week… that’s not so great.
Since I wrote Just Keep Swimming, a lot has happened. My surgeon went ahead and cauterized all those bleeds, which seemed to be working…that is until I went to get my blood checked and found myself at a hemoglobin of 7 (which is almost to the point of needing a blood transfusion.) So we scheduled another scope (a colonoscopy for a person with no colon) and the surgeon found…nothing. Everything was healed and my j-pouch (fake colon made out of my small intestines) looked good.
That would be good news except my hematologist (blood doctor, I have a specialist for everything) said that kind of a drop could only be explained by bleeding. The problem then became figuring out where this mystery bleeding was coming from.
I went to my GI who had this theory about me having disappearing- reappearing ulcers in the scar tissue where they cut apart my small intestines to make my j-pouch. That made sense to me and I was all set to follow his plan that we watch my blood and go in and cauterize the ulcers whenever they come back and just hope that the tissue will regenerate over time (with a possible trip to a hyperbaric chamber to speed up that process.)
Then on Tuesday I started bleeding ****TMI Warning, if you are offended easily by bodily functions please stop reading now****
Now, a certain small amount of rectal bleeding is normal for me-once again, stop envying my glamorous life. But this was a whole different thing. After four or five trips to the bathroom with nothing but large amounts of blood, I texted my internist and asked at what point I needed to go to the ER. Her answer was, “NOW. Go Now.”
So I did. Luckily Mike was home and my mom could take me so off we went. After hours in the ER they decided that they needed to check me into the hospital overnight because if this type of bleeding kept up eventually I would need a transfusion.
Luckily, around 2 am I stopped having as much blood, but the on-call GI still decided to do another scope to see what was going on. The good news- my pouch looked fine again! No re-occurrence of the ulcers, everything was normal. He said the only thing he saw was some hemorrhoids.
Seriously?!! I was hospitalized for HEMORRHOIDS?!! I asked if it was even possible to loose that much blood from hemorrhoids and he said, “Oh, yeah. I had a guy almost die because one was attached to a blood vessel.” Not helpful dude.
Now I am planning all my follow up appointments to deal with my hemorrhoids from hell and waiting to see if my surgeon thinks he can fix them.
So if you ask me how I’m doing, these days I will probably just respond, “Hanging In There,” or “Well, I’m Here.” But if I’m really in a mood I might say something like, “Bleeding out of my ass, how about you?”
If I do, please forgive my rudeness, I’m just really fucking tired.
I am a Survivor. I have learned this about myself the hard way. I have been put through more in my 36 years than many people experience in a lifetime.
And I am so angry right now. Furious and frustrated that we live in a world where the first assumption about a woman who comes forward as having lived through sexual assault or abuse is that she is a liar or somehow “deserved it.” Now I will admit I’m not very hip to pop culture, but I like the song where Kesha sings about brushing her teeth with a bottle of Jack-I can get behind that. What I can’t get behind is a judge that rules that she is legally bound to work for the company of her rapist.
I don’t know all the details of the case, but I do know that coming forward as a victim of rape is difficult, and brave, and terrifying. And instead of surrounding these women with love and support we punish and doubt them. I felt this way when the Cosby allegations were surfacing and there were so many hateful comments about how no woman who was raped would wait 10 years to confront her rapist-so she must be lying, or trying to get money, or a whore.
I stayed quiet then because I was scared for myself, for people judging me. But now Kesha is being tormented in the same way so very publicly, and I have discovered my hidden super-power of not caring what people think of me, so here goes:
I love/hate therapy. Because part of the goal is to continually look at your life and assess it and figure out the ways to break some of your self-destructive patterns and bad habits. And that can be hard. Really hard.
I am in an upswing in my life; my health is finally stable, my energy is back to about what it should be for someone who runs around with 4-year old twins, my family is healthy and happy, and I have a good marriage to a man who can be a pain in the ass but is also my best friend and the best choice I could have ever made for a life partner. And yet I still have so much I have to work through, so much hurt that I never dealt with that comes back to the surface when I am overwhelmed.
I have an analogy I like to use about all of my past traumas being like little (or giant) boxes stuffed on a shelf. One of my well-developed coping mechanisms is the ability to put things that happen to me into a little box, seal it up tight, and stick it on the shelf. This works great until that shelf gets over-crowded and trying to put one more box up there causes everything to topple down on me. That is how I ended up in a place that I was having panic attacks and severe depression.
Now that I am feeling good, I am trying to take down and unpack those boxes one at a time so that the next time something happens (which it will, life is never perfect) I have the room to cope with it.
That being said, I really hate unpacking those boxes. It is difficult, and painful, and I generally just don’t wanna. And I am unpacking a big box right now. One of the biggest on my shelf and the only one I have sealed up so tight that I have almost never spoken of it. Which is saying something because I am a major over-sharer.
I have used this blog in the past to be honest in a way that I just can’t be other places, and I feel the need to do that again.
I am a Survivor. I am a Cancer Survivor. I am an Eating-Disorder Survivor. I am a Depression and Anxiety Survivor. I am a Miscarriage Survivor. And I am a Rape Survivor.
That last one was a bitch to write. Because admitting that is really f-ing hard. It was a very long time ago and I am not going to share the details of my rape other than that it happened. There was no knife and no gun, but my rapist (only now can I call him that out loud) had sex with me without my consent. That is rape. I was raped.
If I am using that word a lot it is because it is totally foreign to me. I pushed it so far back onto my shelf that I did not tell anyone for more than 5 years. Five years. Before I told anyone. And to this day I have only told one friend and my husband what happened to me (and now the entire world who has any interest in reading my blog!)
I can’t give a real answer yet as to why I didn’t tell anyone. I know that I was ashamed. And that I felt it was my fault. And that on some level I knew that if I told anyone they would encourage me to report it, which terrified me. Because what if no one believed me? What if I went to trial and they used the short skirt I was wearing as evidence against me? What if I went through having to relive my rape over and over and over again only to find no justice at all? To have people taunt me and accuse me of lying? To have to hear someone say out loud the things I said to myself, that I shouldn’t have put myself in a vulnerable situation, that I shouldn’t have had so much to drink.
I was young and I was not nearly as brave as I am now and so I chose to shove it down and pretend it never happened. But it did happen. And I am a grown woman now. And I am stronger than I ever believed possible. So I finally have the courage to say it. I was raped.
This is obviously extremely personal, so why talk about it in such a public way? First of all, because I now know that I have nothing to be ashamed of. I did not do anything to deserve what happened to me, and if the person who raped me had any strength of character at all he would not had sex with an unconscious woman. I am “lucky” enough that I do have memories of telling him no and trying to push him off of me before the blackness came over me again. But I want to make this very clear to everyone reading this. Even if I had not woken up enough to try to make my rapist stop, it still would have been rape.
And it was not my fault. I did drink a lot, and I now wonder if I wasn’t drugged, but the truth is it doesn’t matter. Drugged or not, drunk or not. I was raped and no part of that is my fault. It is not a reflection of me or who I am. And if people comment with any sort of nastiness in response to this post, then that has nothing to do with me, they need to find their own therapist and unpack their own boxes.
But the main reason I felt compelled to write this is because I was at my therapist today and she asked me if I knew any other women who had been through something similar that I could talk to, and I said no. And then I thought about the statistics, some of which say that close to 1 in 3 women have been raped or sexually violated. So I must know people this has happened to. People just like me who feel scared and damaged and alone.
But you aren’t alone. Maybe you are in the crisis period of dealing with your rape immediately after it happened, or maybe, like me, you are coming to terms with it a lifetime later.
So this is for you. For Kesha, and for anyone who has been raped or brutalized. And this is for me. By giving a name to what happened to me and coming forward with it so publicly I am declaring that I am not ashamed. I am not embarrassed. I was raped and I should feel no more shame in saying that than saying that I had a miscarriage. Both are private and something I don’t want to talk about every day, but neither was my fault. Secrets have power, and this secret has had power over me for far too long. Not anymore.
I am a rape survivor. And I am working on all the crap that goes with that. But I am proud to say the rape doesn’t define me. Survivor does.
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.
It has been a long time since I wrote on this blog, which some of you may have noticed (although probably not, I don’t kid myself that you are breathlessly awaiting the next installment of my life story!)
There are a couple of reasons I haven’t written. First of all, I majorly overestimated my time management skills and overcommitted. Like a lot. As in I decided it was totally doable to be a stay-at-home mom to twin 3 year olds, run a growing non-profit, write a blog, be on several boards and committees for other organizations, and manage my insane list of doctors appointments and health conditions.
I think that part of the issue was that I felt like my life was on pause for so long, that once I started to feel a little better I cannon-balled into a million activities rather than inching in and doing just a little to see how it went. And maybe that wasn’t the best idea.
And if I am being truthful, which is what I strive to be in this blog, in a lot of ways it was easier to fill my time with tasks I had to do, rather than to turn the focus inward and deal with my own crap- sometimes literally.
My recovery has not been what I hoped for. It is taking a really long time for me to get to whatever my “new normal” will be. I am coming to terms with the fact that I’m missing a bunch of organs, and that means life will never look the same as it does for other people. I am living with the fact that I had cancer and there is no guarantee it won’t come back. I am learning how to keep from yelling at doctors who tell me frustrating and semi-absurd things like I either have some amount of internal bleeding (which they can’t do anything to fix,) or a bone marrow problem (for which the treatment is worse than the problem so they won’t even test me for it,) that is causing me to be chronically anemic and get IV iron every month- probably forever.
And worst of all, I have had this “mystery pain” going on that I can’t trace to anything I eat or do. For a long time, I was always living with the uncertainty that at any moment I could be feeling perfectly fine and then suddenly be wracked with extreme abdominal pain that could last for hours and make it impossible to continue my day. Sometimes I could fight through it, and other times I had to lie on the floor of the bathroom crying and call my mom to come get my kids because I was physically unable to put them into the car and get them home.
I have also been dealing with a lot emotionally. I have discovered that my battle with depression and anxiety is directly tied to the amount of medical issues that I am having. So this summer, when I went through three weeks of extremely invasive and, in one instance, legitimately torturous testing to determine the cause of my mystery pain, I became, well, a big hot mess. It was hard for me to find joy even in the great moments I had with my family. I was just boxing up those yucky, unclear, unpleasant thoughts and feelings and sticking them in a closet to deal with later. I have gotten pretty good at that particular defense mechanism over the years, but at some point that closet can’t fit one more thing and when you open the door it all comes pouring out.
I spent a lot of time the past few months in therapy discussing the fact that part of my brain is always alert for the next thing that is going to go horribly wrong with my body. It’s exhausting. My mom once said to me that it seemed like I was always waiting for the other shoe to drop. Yes. Exactly. Why wouldn’t I expect that, because in the last four years of my life, it always has. Every time I would just barely recover from a major blow, there would be something else to come along and knock me back down.
Boom. Miscarriage. Feeling hopeful because of a healthy twin pregnancy then Boom. Emergency hysterectomy when the twins were 6 weeks old. Start to come to terms with the fact that I almost died and had my uterus yanked out without my permission and then Boom. Find out that all the medicines I have been taking have caused me Osteoporosis, and then come very close to fracturing my spine. Boom. My ulcerative colitis flares so bad I have to have my colon removed. Boom. I have Thyroid Cancer. Boom. Three major surgeries in four months. Begin to slightly feel better and then Boom. Anemia so severe I could barely move and we were considering another blood transfusion.
It just kept coming, I mean how many effing shoes are there?! So when the doctors found a giant gallstone during all of those tests I almost felt relief. I thought, well here it is, the Boom that I can almost count on. One more surgery.
But then they decided that the gallstone was not the cause of my pain and surgery to remove it would be too dangerous with all of my scar tissue. That wasn’t so much of a Boom as a sigh…
So I go to my GI again, and try upping the dose of the medicine he gave me last time that is maybe kind of helping. Truthfully I am not really expecting it to work.
And then a miracle happens…my pain is gone. I realized one day recently that it has been almost three weeks since a major pain attack- I was having them 2-3 times a week. And then I start to feel like I have a little more space, more patience, more light. That’s when it hits me, not with a Boom but with a HAZAA! My background pain is gone too!
See, I didn’t really even count my everyday gut pain amongst my list of things to worry about because it had moved to the back of my brain. The chronic cramping and steady pain was just a hum running through my life that I could manage, it was the acute bouts of pain that I couldn’t live with.
But once it was gone, I realized how freeing it is to be without pain. How much space that pain took up in my head and my heart. How much anxiety and depression and hopelessness that pain caused.
The reason I haven’t written in so long is because I couldn’t. I didn’t want to share my feelings with the world because they weren’t good enough. Because I wasn’t good enough. Because my writing rang false every time I tried. Depression will do that. And some of you reading this who have suffered with depression might understand, all the rational thought in the world couldn’t overcome the ugly, nagging voice that was whispering quietly that I was destined to be sick forever, that I should just get over myself because so many people have it worse, that I had nothing of value to say.
But when my pain eased, and I got on the right combination of medicines to manage my pain, depression, and anxiety, that gloom started to lift. Yet again Xanax for the win!!
I’ll never forget the first time I realized that my hope was back. I was on the floor rolling around with my twins playing some sort of ridiculous game and the three of us were all laughing hysterically. And I looked at the two of them and my husband who was sitting across the room chuckling at our antics, and I felt like my heart would explode. I was hit with an overflow of gratitude for my life, for my ability to be present with my family in body and in spirit. It was a fleeting but absolutely perfect moment.
And with that moment, I started to find myself again…I started to get some of my sparkle back.
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.
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.
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.
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!
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.”
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!