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.

img_3403
As Always, Making the Hospital look GOOD!

 

 

 

 

Advertisements

Just Keep Swimming

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

dory

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

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.

img_1045

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.

survivor

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.

img_0250

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

img_0582

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!!

 

Sparkle

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.

stopme

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.

Thank you flowers from a friend, they just made me really happy so I thought they fit this post!
Thank you flowers from a friend, they just made me really happy so I thought they fit this post!

Mitzvah Therapy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I Have A Lot Of Feelings

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My Why

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

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

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

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

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

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

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

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

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

In Mommies In Need I found my “Why?”

 

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