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!

 

 

 

 

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.

 

 

 

 

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.

Lucky to be Annoyed

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

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

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

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

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

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

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

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

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

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

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!

Hanging in The Hospital

I’m sitting in the hospital right now, but for once it’s not for me.  My grandmother, Gaga, is having some health issues and I am here with her.  We are waiting to see if a blockage passes, so I am hoping and praying that she does not need to have surgery, especially since I know just how difficult intestinal surgery can be.

But right now, I’m just sitting here.  She is sleeping and I am hanging out in her room so that there is someone here for her if she needs anything and to help communicate with the doctors when they come in.  I’m also giving my mom a break so she can shower and rest since she was up all night getting Gaga admitted.

And it’s weird, cause I have spent a LOT of time in this hospital, but most of it was in that motorized bed, not next to it.  So the beeps and whirs of the machines, the constant hum of chatter in the hallway, and the ticking of the clock (because for some ridiculous reason apparently the only clocks they can put in hospitals are stupidly loud,) are familiar to me.

Right now a lot of people close to me are going through health issues similar to ones I have dealt with and it’s strange to be seeing it from the other side.  It is also difficult, because even though I am so incredibly grateful that I am (hopefully) past the worst of my health struggles, the memory of that pain is still quite fresh.  So when I see Gaga with an NG tube sucking bile out of her stomach, I cringe for her, cause I hated that thing- like more than I hate Caillou. Which is a lot.

For anyone who has not had the pleasure of being acquainted with an NG tube, it is a long tube that goes through your nose, down the back of your throat and into your stomach and then it sucks up everything in your stomach and spits it into a container and every once in a while a nurse comes by and dumps out your sludge bucket.  It doesn’t hurt, but it is super annoying, irritating, and generally unpleasant and gross.  Wanna hear one of the most disgusting things ever to happen to me? If not stop reading now…. still here?  Ok, when they yanked the NG tube out, I got nauseous and started puking, as a tube was coming out of my nose and throat, it was unbelievably miserable.  And this was when I was in the hospital for having my colon removed, so my whole abdomen was sliced up.  I have experienced a lot of different types of pain over the past few years, but I can say without a doubt that intensely vomiting after abdominal surgery (which I did after each of the 4 I had) is the worst!

And that brings me to Annie, Annie who inspired me to start Mommies In Need.  She and I spoke the other day and on the bright side, the Mommies In Need nanny we have paired her with is working out beautifully and the whole family is really happy and relieved to have that very necessary help.  But ya’ll (sorry my Texas roots are showing) she is in the worst of it right now.  The nausea, the pain, feeling like everything hurts and you think something must be terribly wrong and then having a Dr say that what you are going through is just a normal part of the healing process.  And you are like, “NORMAL?!!  So having pain so bad you think an alien is about to burst out of your stomach and start tap dancing on the table and then rushing to the ER and needing a morphine drip only to find out it was gas pain is normal?”  Well that sucks.

Unfortunately, going through this stuff just sucks.  And I feel terrible for my friends and family who are suffering right now because I truly know how they feel and I hate that they have to go through it.  But all I can do is sit here and watch Gaga sleep and hold her hand when she needs it.  Or give Annie some words of encouragement and a safe place to express frustration with the healing process and keep working to grow Mommies In Need so that she doesn’t have to worry about her kids during treatment.  And I am happy to do those things because I know just how much it means to have someone by your side in a dreary hospital room, and how much of a blessing it is to have a friend willing to listen, and how vitally important having a nanny was to my recovery and my sanity.  So thank you to all the people that were there for me when I needed it, and thank you God for allowing me to be strong and healthy enough to be here for the ones I love.

Hey, at least when my friends and family get sick they have a hospital/surgery/general health issues pro on hand.  I’m like a one-woman Wikipedia of illness-related crap! With one call I can tell you what to bring for a long hospital stay, give you a reference for an excellent Internist, GI doc, Colon/Rectal Surgeon, General Surgeon, Endocrinologist, Osteoporosis Specialist, Urologist, Physical Therapist, Dermatologist, Hematologist, Oncologist, and Shrink and give you a run down of the pros and cons of just about every pain medicine on the planet!

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.

 

Being Brave Isn’t Pretending You’re Fine

“Gosh, it’s been so long!  How are you?”  I said to a friend I accidentally butt-dialed while trying to call someone else.

“Good…Well…OK… We were really excited because we were pregnant with twins, but then I had a miscarriage.”

And I paused.  Honestly, I was kind of shocked that she just led with that.  I mean, it had been over a year since we last spoke, and we aren’t even close friends.  That’s a pretty personal statement to just put out there.

Why though?  Why isn’t it OK to just tell the truth about how you’re feeling.  If you just lost a baby why should you have to pretend like everything is fine?  It’s not.  And what a brave thing to do.  We often hear the phrase “putting on a brave face” which means covering up your true feelings and going on with your life.  But in reality, what takes courage is to acknowledge those feelings, to let people in.  That is really scary.  Because when you let people in to how you are really feeling, to the struggles in your life, it makes you vulnerable.  It opens you up to people saying stupid, hurtful things, or getting super awkward, or just ignoring your comment and pretending like you didn’t say anything- which can be even more painful.

And miscarriage… well, we really don’t talk about that.  I remember years ago a friend of mine was pregnant and I hadn’t seen her in a while.  When I asked her how she was she said, “Well it’s been a rough summer… I was pregnant, then I wasn’t, and now I am pregnant again.”  I remember freezing, thinking, “Oh wow, she just told me she had a miscarriage.” But I was too scared to acknowledge it- ’cause what do you say?  So I just kind of pretended I didn’t really notice the comment and we skipped over it.  Yeah, I’m not very proud of that.

About 10-20% of known pregnancies end in miscarriage, that’s huge.  And yet, nobody talks about it, it is kind of a taboo subject in polite conversation.  If your mom or even your dog just died and someone asks how you are, it is perfectly acceptable to say you are feeling pretty lousy because of that loss and people will comfort you accordingly.  But announce that you just lost a baby and eerrk (my impression of a needle scratching across a record,) sometimes conversation just stops.  And if it is acknowledged, the platitudes come out.  “Oh, well at least you know you can get pregnant!”  “You’re young, you’ll have another one!” or my personal favorite, “Well, it probably meant that there was something wrong with the baby anyway.”  Right.  Because I would rather have my baby die than be born with a disability, is that what you are saying?

In case you haven’t guessed by now, I had a miscarriage myself.  I was only about 9 weeks along but I was devastated.  I have been through a lot (see A Brief Timeline of Crazy if you don’t believe me,) but losing the baby was one of the absolute worst things I have dealt with in my life.  Everyone’s experience is different, but I loved that baby fiercely from the moment I knew he/she exsisted.  My husband and I called it the Hufflepuff since we didn’t know if it was a boy or a girl and we talked about our plans for the baby all the time.  When I started spotting, I knew in my gut that the baby was gone, but I still made my husband leave on a business trip because some crazy part of me believed that if I asked him to stay home to go to the doctors appointment with me, my fears would prove to be true.  But sending him away didn’t help, I still got the horrible news at the ultrasound that the heartbeat was gone.  And then I had to make decisions about what to do, and suffer through a lot of pain and weeks of bleeding.  I won’t go into that now, but I remember how hard it was.  And most of all, how lonely I felt.

We have decided as a culture not to tell people we are pregnant until 12 weeks, since miscarriage is so common before that.  But that means that if you lose a baby, most people didn’t even know you were pregnant so how can they be invested in that little life?  My husband was wonderful to me at that time, but even he could not understand why it affected me so deeply and why I became so profoundly depressed afterwards.  We have funerals in part so that we do not have to mourn alone, because that is a huge weight to bear.  But most people don’t have funerals for miscarried babies, so that burden is not shared.

Friends and family turned out in droves to help me and send flowers or cards or lend a word of comfort after each of my surgeries, which was wonderful.  But my miscarriage was when I really needed the most support, and I have never felt more alone.  A huge part of that is because no one knew, and I “put on a brave face” for those who did.  I went back to work and just said I had been sick for a few days, but inside I wanted to scream, “How can you people not see that a part of me just died with the baby that was inside me?!”  I went around pretending I was fine, but I was far from it.  Eventually, Sebastian sat me down and said that he thought I needed to see someone and I found an amazing counselor to help me work through my depression.  A few months later, I got pregnant with the twins and was so happy and so very scared at the same time!

I have been talking a lot about #BraveOctober and being brave, whatever that means to you.  To me, today, it means finally speaking up about my loss.  Telling people that if you are hurting, the courageous thing to do is to let someone know.  Not to bottle it up inside and think that you are being “brave” by hiding yourself from the world.  Maybe being honest about your struggles might just let someone know that they are not quite as alone as they feel in whatever pain they are going through.

So I paused.  And then I said to her what I wish people would have said to me.  “I am so sorry for your loss.  Do you want to talk about it? I’m here for you.”

The 5 BEST Things about Major Surgery

Today, a friend of mine is going in for surgery and it made me start to remember all of the things that I thought and worried about before each of my 5 major surgeries in the last couple of years (see A Brief Timeline of Crazy if you just went, “wait, WHAT?”)  I can go on and on about how scary and difficult and painful surgery is (wouldn’t that be a fun blog to read?!) but I realized that no one really talks about the good parts of having misbehaving organs ripped out.  So here it is…

The 5 BEST Things about having Major Surgery

  1. The Binge Watching- TV shows and movies on Netflix, Amazon On Demand, Hulu, etc. were practically designed for someone in the hospital or in recovery.  My suggestion is to pick a show that you have never seen before that is already 6 or 7 seasons in and then just marathon it.  Personal favs include Pretty Little Liars and Gossip Girl but I am really sophisticated and cultured like that, you may be more of a West Wing person and that’s cool too.  I wouldn’t recommend Lost though because with all the drugs in your system you will probably get really…well, I think you know where I’m going with that one! Which leads me to…
  2. The Drugs- I have a bizarrely high tolerance to pain meds, but even I got to a point when I started professing my love for the nursing staff giving me the drugs.  Apparently I kept telling my Dilaudid-wielding nurse, “I love you, do you know how wonderful you are?”  This got a little awkward for my husband who was standing there, especially since it was a male nurse!  If you are lucky you get a magic device- the pain pump (my favorite was filled with Dilaudid but Morphine is pretty good too.)  Don’t be a hero, you don’t get any points for not pushing that button, use this liberally and enjoy.
  3. The Love- Your friends and family will come out of the woodwork to shower you with cards, emails, texts, flowers, gifts, jewelry (ok, maybe not jewelry, but if you have a friend in surgery- please consider it.  Nothing says “Get Better Soon” like a pair of diamond studs!)
  4. The Help- Again, at no other time in your life will people be so ready and willing to help you.  Everyone says, “Let me know what I can do.”  Don’t make the mistake I did and just think that is an empty line.  Most people that say this truly do want to help (and if they don’t- too bad, they offered, if they didn’t mean it that’s on them!)  Seriously, let your loved ones know what they can do.  Here’s a list of possibilities- grocery shopping, dishes, pick up dry cleaning, make you food, buy you food, watch your kids, do your laundry, bring you magazines, get your prescriptions, or just come over and keep you company for awhile when you can’t leave the house and are going stir crazy.
  5. The Perspective- I think this is the biggest one.  If you survived a major surgery (or many surgeries) you will probably come out of it a little different.  You don’t know just how much you can live through until you go through it.  The worst of the pain, the hospital stay, and the recovery feel like forever.  But then one day, you wake up and realize that you are starting to get back to yourself again.  You think, how in the world did I get through that?!  And you start to understand that just maybe you are stronger than you ever gave yourself credit for.  Maybe you have a little more appreciation for the good things in your life.  Maybe you hold your loved ones a little tighter because you realize just how precious your life and health are.  Maybe you will one day be able to give support and compassion to someone going through a tough time in a whole different way because you get what it is like to be really down.  Maybe the whole process helps you realize just how many people love you and who your true friends are.  And maybe, just maybe, you have some killer new bling to go with your new look on life.

If you are about to go into a major surgery right now or know someone who is, remember that even the hardest things in life eventually pass.  Enjoy the downtime while you have it, I feel like I’m speaking in cliches here, but the world moves really fast most of the time.  I don’t really believe that everything happens for a reason.  But I do believe that things happen and you call on every bit of strength you have to deal with them, and that you can then choose to find something good that came out of it all.

I can’t say that I enjoyed any of my surgeries or sicknesses, but I can say that I truly appreciate all the love that people showered on me, the knowledge that I have more resilience than I ever dreamed of, and that I am overwhelmed in gratitude that I am alive, on the mend, and able to hold my husband and daughters every night.  Oh and Gossip Girl, I really enjoyed getting to watch that show in a continuous marathon- when you are on drugs and don’t take a break between episodes it is even more crazytown!

When recovering, you never have to get dressed!
When recovering, you never have to get dressed!

Maternity Jeans Manifesto

I believe in Maternity Jeans.  They are an underrated and underused miracle of modern fashion.

I jumped into the world of maternity pants early because with a twin pregnancy, I was unable to button my jeans at about 10 weeks.  The first time I went to Pea in the Pod and slipped into a pair of those pants that look like normal jeans but have an oh-so-comfortable stretchy waistband, I was in heaven.  Now, I need to confess that I have always been adverse to pants with buttons (the reason that yoga pants and maxi dresses are basically my uniform.)  Seriously, my husband can attest to this, every time I sat down I would subtly reach under the table and unbutton my jeans and then button them back up before I stood.

I refused to go full pajama jean (although I did consider it) but then I discovered maternity pants.   The magical thing about them (besides no buttons) is that they fit when you are at your skinny weight and also fit when your stomach is a huge beach ball.  At the end of my pregnancy, I was wearing XXL maternity tops and even those were too tight, but my amazing jeans still fit.

I had a c-section with the twins and then a hysterectomy 6 weeks later (see Brief Timeline of Crazy for reference) so I continued to wear the stretchy top jeans for months after pregnancy.  I was “lucky” to loose the baby weight fairly quickly due to the awesomely fun combo pack of breastfeeding twins and an increasingly worsening flare of ulcerative colitis.  But still I held onto my “magic pants.”  About 8 months after having the girls, my husband finally staged an intervention and I tearfully gave away my stacks of maternity clothes and started wearing my old jeans again. Sigh.

Flash forward to February 2014.  I had just had an operation to remove my colon and was fitted with an oh-so-stylish ileostomy bag.  For those of you who don’t know what this is, essentially I had a piece of my small intestine sticking out of my stomach and a sticky bag thing that I put around it to catch stool while I healed enough to go back into surgery and have my newly created j-pouch (kinda like a fake mini-colon made out of small intestine) reattached.  Now, please stop with the fawning over me here, yes my life is glamorous, I know you want to be me, but that is not the point of this particular post.

It was difficult to wear pants while I had the bag and then one day I had a stroke of brilliance (seriously I think a lightbulb went on over my head.)  So back I went to the maternity store.  I grabbed several pairs of jeans and began trying them on.  They were as comfy as I remembered and were perfect to stretch over the ostomy bag.  If you are woman with any type of ostomy, please consider getting some.  They don’t dig into the bag, they go all the way over it and provide an extra layer of protection, and they help keep it flat so it doesn’t show under clothes!

I gleefully made my way over to the buy the pants and this was my conversation with the lady at checkout:

Her:  Nice choices.  When are you due?

Me:  Oh, I’m not pregnant.

Her:  I’m sorry, will you be needing a gift reciept?

Me:  No thanks

At this point the woman gets an obviously puzzled look on her face, so I decide to have a little fun.  I lean in and say very mysteriously, “I need them for medical reasons.”  And then happily leave her stumped trying to figure out what kind of medical condition would cause a skinny, non-preggo girl to need maternity pants!

The pants served me well during the months that I had an ostomy bag and the months after surgery when my belly was still far too tender to wear anything else.  And then I got to a place where I could totally wear normal jeans again.  I started to think that maternity pants and I had a good run, but it was time to give them up.  But then I thought… F that!  I have been through so much in the past few years, if I want to wear maternity pants for the rest of my life I am going to.

If people think I’m weird, oh well, wouldn’t be the first time.  As women, we are so often putting fashion before comfort, but here’s a chance to wear something comfortable and cute!

Never been pregnant? So what!  There is no law saying you have to be a slave to the jeans button, pregnant women don’t have exclusive rights to maternity clothes.  I say we stop calling them maternity jeans and start calling them “Happy Pants.”  Hey, I know a lot of men who would probably love some stretchy topped jeans- no more unbuttoning at Thanksgiving, you can still eat as much as you want without wearing sweats.  Happy Pants for Everyone!!!

So if you see me out and about in jeans, you can give me a little wink, cause you know “Natalie’s Secret.”  Those sexy designer pants I’m wearing go all the way up to my boobs and I am proud of it!

You wish your pants were this awesome!
You wish your pants were this awesome!