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!

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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!

A Moment of Gratitude

I rant a little (or a lot) on this blog.  I talk about the crazy things that are going on in my life and how difficult it has been to deal with it all.  I have talked about my anxiety, my cancer, my miscarriage, my disordered eating, and my surgeries, in addition to the general insanity of raising twin toddlers.  If you want to get caught up quickly you can visit A Brief Timeline of Crazy.  And while I have just begun mining the things I want to vent about and get off my chest, I feel the need to pause for a minute and say that despite all of that I never forget that I have also been amazingly blessed.  I can’t say anymore that I believe that “everything happens for a reason,” but I do believe that if you try, you can take the bad that happens to you and make something beautiful out of it.  For me that something is a new appreciation of the good things in my life, as well as the ability to be there for others who are going through a difficult time.  So here is a list of 10 things for which I will be eternally grateful:

  1. Flopsy and Curly- more than anything else they have been my reason for getting out of bed and my motivation to keep going no matter how crappy I felt.  They are awesome and hilarious and they love tutus, purple, and sparkly things (just like mommy!)  They were the worst sleeping babies in the history of the world, but I am incredibly thankful that they are relatively even-tempered toddlers.  They play really well with each other about 75% of the time, which is pretty good for 2 1/2 and every single day they do something that stops me in my tracks because it is so cute, or sweet, or smart, or funny and I think, “I am the luckiest person in the world that I get to spend my days with these two amazing little people.”  Like when Curly put her hand on my cheek and looked into my eyes and said, “You’re my sweet girl.”  Or when Curly was getting frustrated with putting on her own shoes and Flopsy said, “I’ll help you” and then put Curly’s shoes on for her.  Or yesterday, when they were playing on the swings and taking turns sitting on each other’s lap and swinging together.  I seriously almost had a stroke from cuteness.
  2. Sebastian- My husband is incredible.  Truly, it makes me mad sometimes because I can’t even complain about him when I get together with a bunch of other moms.  He helps around the house, gets up in the middle of the night with the kids when I’m not feeling well, is a loving and devoted dad, encourages me to take “me” time or go out with friends when I can, and managed to pick up all the extra work I could not do this past year when I was really sick.    He also has to put up with much more of my crazy than anyone else and somehow still loves me.  The most annoying thing about him is that he is almost always right.  Please don’t tell him I said that!
  3. My Family- By this I mean my parents, siblings, grandparents, and also Sebastian’s family who have been wonderful through all of our turmoil.  I seriously don’t know how we would have survived the past few years without the family support we have had.  They have gathered around us like a giant protective hugging net that has kept us from falling- yes a hugging net, I don’t know what that is either but I’m sticking with it.
  4. My Friends- Even those who I have not talked to on a regular basis in the past years have come out of the woodwork to support me.  Especially since I started this blog and actually let people in to the realities of what was going on with my life, I have been showered with love from my friends.
  5. Wonder J (Our Nanny)- I have a whole post dedicated to her, but knowing that my kids are in such good hands has taken a ton of mommy guilt off my shoulders!
  6. Dr. Awesome (My Therapist)- she helps me keep the crazy at bay and gives me Xanax.  ‘Nuff Said.
  7. That I Had Twins- sure, having 2 babies at once was front loaded with difficulty, but when I got the scary news that my uterus had been removed to save my life, I was devastated, but not nearly as much as I would have been if I hadn’t had two darling babies to go home to.  I know that my family is perfect and complete.  Plus, I don’t get a period anymore- can’t say that I miss that!
  8. The Body Scan that Found my Cancer- it was horrible timing, but I do realize how lucky I am that a random scan before surgery found that lump and I was able to have it removed long before I ever showed symptoms.  Otherwise, that little ball of yuck could have kept growing for a long time and put me in a much worse situation.
  9. Our Financial Security- I am immensely grateful that we had good insurance and the ability to get through these years without the crippling debt that chronic illness and multiple surgeries can bring to a family.  Sure, I would much rather have taken an awesome vacation than spend 20 days in the hospital this year, but we didn’t have to choose between paying for my medicines and paying for food.  I do realize how very lucky I am for that.
  10. This Blog- I only go to therapy once a week, but I can write here whenever I want!  It has given me a sense of purpose, a way to express myself, and an outlet for the whirling dervish of thoughts that are constantly going in my head.  It has allowed me to be honest in a way I have never been before.  I am very good at putting up a front of being fine when I am actually far from it. It has been so helpful and freeing to me to have a place to let down my guard, to show the mess I have going on inside, and to advertise to the world how NOT perfect I am.

I started thinking that I needed to write this because I have several friends in crisis right now, and I constantly get people saying to me, “Well, I guess I shouldn’t complain.  It’s not as bad as what you’ve been through.”  I would like to state right now for the record- that is total BS.  If you are dealing with pain, difficulty, or trouble in your life, that is yours and you have every right to be upset about it.  A dear friend of mine who has been through cancer, the loss of her mom, and many other struggles said something to me that I will never forget.  I was saying essentially the same thing to her, that I shouldn’t complain because it could be much worse.  And she said, “If that helps you right now, then use it.  If it doesn’t, don’t!”  I love that thought.  Sometimes you need to wallow in your grief or pain or difficulty to get through it.  And sometimes you need to look at the big picture of the world and be amazed that in the scheme of things your life is actually pretty good.

Right now I feel the need to show my gratitude to the universe that let me get through this horrible time in my life with myself missing a few organs and a little bit of sanity, but mostly intact.  For the first time in a very long time I feel hope.  And that is so beautiful.  I want to say to those out there who are in the midst of a dip in your life when you feel like things will never get better… I have been there.  Like really there, in a pit, thinking that I would never be able to climb out.  And while I am not at the end of my journey of healing (so don’t be surprised when I have ranting posts later about Ulcerative Colitis, or surgeries, or other craziness) I can finally see that glimmer that things are going to be OK.  It is crazy how that snuck up on me.  I didn’t notice I was doing so much better until one day I realized that I could breathe a little easier, that I wasn’t in a constant state of tension waiting for the next of like 40,000 shoes to drop.  And for that spark of hope I am completely awash in gratitude.  Thank you to everyone reading, commenting on, and messaging me about this blog.  You have all helped me to find that spark, thanks for being part of my therapy.  But don’t worry Dr. Awesome, I still need to come to you for my Xanax!

How can I not be grateful for getting to see this?!
How can I not be grateful for getting to see this?!

TV is Brainwashing My Kids… Awesome!!

A couple of days ago, I had the unicorn of parenting experiences: a tear free visit to the doctor to get a flu shot!  My two and a half year old twins were actually excited to get their shots.  Yes, you heard that right, excited.  As in I briefly mentioned to them that after nap we would be going to the doctor to get shots and when they woke up, Curly said to me, “Mama, is it time to get shots now?!”

In fact, we went to a flu shot clinic and there was a wait, so I said we could go get dinner while we waited and that was when they got upset… because we were leaving the building without getting our shots.  I had to promise that we would come back after dinner and they would in fact be poked with needles.

And the actual vaccination experience?  Great!  Curly went first and while she flinched a tiny bit at the actual shot, there were no tears, because she was eagerly anticipating her Band-aid and sticker.  Flopsy went to the table willingly, cried for about 30 seconds after the needle went in, and was perfectly happy by the time we left.  Then we met their daddy for ice cream.  All in all it was a lovely afternoon, unlike last year’s flu shot debacle, which involved Stage 5 meltdowns from both girls and myself.

I wish I could attribute this stellar behavior to my superior parenting skills, but alas the credit goes to whatever genius came up with Doc McStuffins.  Yes, Disney Jr., home of the good doctor, is now my favorite channel ever because my kids are obsessed with going to the doctor, pretending to be a doctor, saying they want to be a doctor when they grow up, and apparently with getting shots.  The first thing they said was that it would be “just like on Doc McStuffins.”  I jumped on that bandwagon with both feet and my bells on.  I let them watch an extra episode on TV that day and loudly led a “Time for the Check-Up” sing along in the car. I even bought Doc McStuffins Band-Aids for them to use on the boo-boos.

This is Stuffy the Dragon for those of you not yet initiated into the Doc's cult.
This is Stuffy the Dragon for those of you not yet initiated into the Doc’s cult.

I have to pause here and say that when they were first born, I was that parent that was all, “Absolutely no screen time until 2 or their brains will rot and fall out of their heads.”  If you took that approach and were able to stick with it, then more power to you!  I, however, kind of relaxed those rules around 18 months when I realized just how much I could get done during 15 minutes of Sesame Street.  And then as they got older but were still waking up at the crack of dawn, an entire 50 minute episode gave me a beautiful semi-quiet time to mainline some coffee and become a mostly functional human being.

Now, while I still try to make sure we don’t spend all day in front of a screen, I am starting to realize just how much they pick up from the blessed moving pictures machine.  And despite all of the TV naysayers, some of that stuff they pick up is pretty awesome.  Like the time Flopsy said that something was “humongous” and when I gave her a funny look, she said “that means big, big, big, Mommy.”  I know that, but how do you?  You are 2 and 1/2!  Sesame Street!  It’s also where Curly learned the word camouflage, which she thought she was doing when she hid behind a sheer curtain.  Not quite kid, but maybe if you keep watching, you will have the more subtle language nuances down by 3!

So if Doc McStuffins makes them want to be a doctor, I say Hooray!  I am so glad there are TV choices out there that get kids to aspire to real careers.  I mean, if they say they want to grow up and be a princess, I’m not going to tell them that is totally impossible- but we should probably start running in different social circles.  And if Angelina Ballerina gets them hyped up for their ballet class, then she can pirouette her way into our living room anytime.  Now, if someone can just get Cailllou cancelled, our TV experience would be perfect.  For some reason they love that whiny bald kid, and that show seriously makes me want to start drinking at 10 am!