There are days when I look at the world, and see a place that has gone totally off the rails. A place where the blatant discrimination and racism and cruelty that we see every day makes me want to scream. To give up. To weep for the future that will be left to my children. To think that I can’t possibly make a difference when everything around me seems so broken.
When I wrote Survivor, I thought I was prepared for anything. I felt confident enough in who I am that I believed I could handle any criticism that came my way. What I did not expect though, was the overwhelming kindness with which I was met. So many people, some of whom I hardly know, wrote, or messaged, or texted, or emailed, or commented about my post with words of encouragement, and solidarity, and support. I had multiple women privately share with me that they too are rape survivors who had kept it to themselves for far too long. I had friends and relatives I have not spoken to in years reach out to me to compliment my bravery and show me love. And I did not have any negativity directed towards me. None.
And that was truly a blessing for the scared little girl inside me who wrote those brave words but still worried about what people would think. If I would be forever changed in the eyes of those who knew my secret. I wish I could share the hundreds of messages of support that I received with every rape survivor who is afraid to tell her story or who feels alone. That secret held a remarkable amount of power over me, and now that I am not clinging so tightly to it, trying to keep it in and stuff it down, I can actually let it go.
I feel so unbelievably free. Light and joyful and full of hope. And I feel this way in spite of the fact that this has been a tough week.
A few days ago I was sitting in the ICU waiting room with my mother waiting for my dad to get out of an emergency appendectomy. He is doing great now, but at the time I was getting a little nervous because his surgery was taking much longer than the doctor said that it was going to. Then we started flipping channels and Shawshank Redemption came on – this is the new Walnut Hill Medical Center place and there are flat screens everywhere and the biggest hospital rooms I have ever seen. I seriously had hospital room envy that my dad had a palace for his few hours there and I had to spend twelve days in a drab shoebox, but I digress…
So it was the part where Andy says, “Hope is a good thing, maybe the best of things, and no good thing ever dies.” And I was reminded just how incredibly important hope is. I realized that the greatest gift I have ever been given is resiliency of spirit. After everything I have been through I still have hope.
Thank you to everyone who helped me re-affirm my faith in humanity this week by going out of your way to reach out to me and offer a kind word or a message of support, or a hug. I know a lot of you are going through your own struggles, so tonight I spent a few moments in meditation and prayer for those I know who are having a tough time right now.
I have this little candle that I bought as part of a youth fundraiser at my church; it is a tea light covered in tissue paper with the word “Hope” written on it and I lit it for the first time tonight.
I wish for you that when everything is at it’s worst you can see the glimmer of that tiny scrappy little candle- held together with Elmer’s glue and tissue paper. It may not be much, but just a little bit can change everything. Hope.
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.
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.
**Warning if you are easily offended by the F bomb, please stop reading now. I can’t be responsible for any pearl-clutching from this point forward**
In the past few months as I have started to get my Sparkle back, I have realized that laying just beneath the surface of my much-scarred skin is a heretofore undiscovered superpower… The power of not giving a fuck.
That’s right, I said it. All the trauma, all the pain and suffering, the depression, the crippling anxiety, all of it has served a purpose. I have learned a lot about what really matters to me, what makes me happy, and what is just not worth giving a fuck about.
Like if my kids pick out their own outfits for school and refuse to let me brush their hair- not a battle worth fighting. Or if my house is picture perfect when people come over- their toddlers are just going to wreck the place anyway, might as well start there!
Or what other people think of me. I truly do not have any energy available to give a shit about what you think of the fact that I wear capes in public- like a superhero.
Or got my first tatoo at 36- like a badass.
Or wear and sell Jamberry nail wraps, and trade them on message boards, and am basically slowly becoming a Jamberry hoarder- like a total and complete nerd.
I used to spend a lot of time- and I mean a lot- worried about what other people thought of my appearance, my behavior, my talents, and just about everything else. But now, I know how it feels to let go of that and it is immensely freeing.
All that I have been through has changed me, I mean how could it not. I am turning into someone who is truly comfortable in my own skin, who is proud of who I am and what I have accomplished. And while I still appreciate when people compliment me, which they do ’cause I’m awesome, I am able to accept praise, hear criticism, and not obsess over what that person really thinks of me. Most of the time anyway.
I do feel like I want to explain one of my more out-there decisions of late. A few weeks ago, to celebrate my 36th birthday, I got a tattoo. I have been talking about it forever, and I think my husband thought I was bluffing all the way until I actually sat down in the chair to get it, but I finally went through with it and couldn’t be happier.
I have a little semi-colon on my foot with a heart at the top. When people ask why a semi-colon I say, “Because I don’t have a colon!”
The truth is a little more complicated that that, although that is a big reason I decided on the tattoo. I wanted a permanent mark on me, a reminder to myself that I have been through hell and survived it. That things have been bad for me- really bad, and I am still here. That I made that choice to keep on going and emerged from the darkness of these past few years as someone I really want to be.
You may have heard of the semi-colon project. If not, google it, but it is about depression awareness, and the semi-colon tattoo represents the idea that depression does not have to be the end of your life (a period at the end of a sentence) but that it can just be a pause (a semi-colon) and that you can take some time at that pause and then keep going with the rest of your life.
I love the beauty of this imagery, so I adopted it. Because I was low, I was depressed and anxious, and in horrible pain, and I lost myself. For a long time, I was just getting by day to day. So that was my pause. And now I am resuming life after that pause and it feels wonderful!
And in starting up my sentence again, I realized that the worry about other’s opinions of me is just not worth it. I’m still discovering exactly who I am after my pause- but I love who I am becoming. I hope you love her too, but if you don’t- I just don’t give a fuck!
Happy New Years, and may 2016 be the year of discovering your super-powers!!
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.
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:
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.
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!
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 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 surgery, miscarriage, 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!