I Am Sick & Tired of Being Sick & Tired

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.

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As Always, Making the Hospital look GOOD!

 

 

 

 

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Just Keep Swimming

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

Hope

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.

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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.

 

 

 

Survivor

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.

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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.

2015, The Year I Found My Hidden Super-power

**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.

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Or got my first tatoo at 36- like a badass.

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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!!