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!

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!

Poltergeist Panic Attack

The most terrifying tree in the world!!!
The most terrifying tree in the world!!!

Have you ever had a panic attack?  If not, then imagine being absolutely terrified- heart racing, palms sweating, breathing heavily, feeling certain that something terrible is going to happen and that you could die at any moment.  Then, imagine that there is nothing around you to be scared of, that you are just in your room on a regular day and that this feeling came out of nowhere.  Sounds fun, right?

Everyone I have talked to who suffers from extreme anxiety or panic attacks has different experiences, but the one thing that we all seem to have in common is that horrible feeling of dread, of …well, panic.  It’s something about adrenaline releasing into the body and producing a “fight or flight” response.  Basically, your body thinks that a bear or a dinosaur or something is chasing you, so every instinct you have is screaming at you to run away.  But when there’s nothing to run from it really screws with your head.

In the past few years I have been through a lot (this is kind of an understatement, see A Brief Timeline of Crazy if you need the CliffsNotes) but my first panic attack was one of the most frightening things I have ever experienced.

I was between surgeries and having a pretty good day, so my mom decided to take me out to lunch.  We were driving and I started feeling nauseous (which I now know can be a panic attack precursor for me.)  I thought I was just hungry and asked her to pull over to the first place she could find.  We stopped at a La Madeline, with it’s pseudo-French décor and soft music- not really the type of place you see in horror movies.  While we were waiting, I started to get this terrible sense of dread.  It’s hard to explain other than that all of the sudden I was sure that something horrible (like a terrorist attack, or earthquake, or Zombie apocalypse) would be going down soon at this Dallas strip mall and that we needed to get out NOW!

I communicated this to my mom and while she looked at me a bit funny, she humored me and we grabbed the food and hopped back in the car.  On the 5 minute ride home my heart was pounding, and I began thinking that I might be having a heart attack or stroke- cue the “stroke symptoms” Google.  I got in the house and ran to my room.  Then I looked out the window and saw a tree.  I looked again and it was moving (like probably because of the wind.)  I then realized that it looked like the tree that comes alive and grabs the kid in Poltergeist and I told my mom to quickly shut the curtains before it “got me.”

I think it was at this point that she started to realize there was something really strange going on and she encouraged me to take one of my Xanax and call my therapist.  No answer, so I left a message and continued to freak out.  I could still see the tree through the sheer curtain and it looked even more menacing. I soon came to the conclusion that there was a distinct possibility I was going to die, like in the next few minutes.

I would like to pause here and note that there was still a small rational part of my brain that was thinking that perhaps the tree was not really going to come to life and strangle me with its branches, but it didn’t stop the panic.  I kept leaping up like I wanted to run, realizing I didn’t know where to go, and lying back down.  It was about this time that Sebastian came home and relieved my mother of crazy-person watching duty.

He suggested that I breathe into a paper bag.   So I did- I breathed into a Whole Foods brown paper wine bag for like 5 minutes.  I did not feel any better, but eventually I just felt stupid.  Like I was in some unimaginative rom-com and the girl gets so nervous before the big date that she starts hyperventilating and her sassy (but not as attractive because she wears glasses) BFF gives her a bag to breathe into!

Eventually we got my doctor on the phone and she helped me identify what was going on. With a combination of a licensed professional talking me down and a few more Xanax, the terror eventually faded.  Leaving me feeling exhausted and ridiculous.

See, that’s the thing, I remember the whole series of events and what I was thinking.  In hindsight it seems absurd and even a little funny, (I was scared of a tree!) but at the time the feelings I was having were real.  I can totally understand how a lot of people with panic attacks go to the emergency room.  And I think there is a sort of stigma to that, “Oh, it was just a panic attack.”  Like the person overreacted and the whole thing was no big deal.  But if it happens to you, believe me, it is a huge deal.

That’s why I wanted to share my story, so that if you have never had a panic attack, maybe you will be able to be a little more understanding to a friend or family member who is suffering from anxiety.  Also, if you are someone who has gone through this, you are not alone.  I’ll get it when you say that the crowds in a subway set you off, or a certain fabric stripe made you dizzy and fearful.  But don’t call me if a tree in your yard ever comes to life…that shit is freaky!