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!

One Lovely Blog Award

One Lovely Blog Award!
One Lovely Blog Award!

The rules for accepting the award are:

~Thank the person who nominated you for the award.
~Add the One Lovely Blog logo to your post.
~Share 7 facts/or things about yourself.
~Nominate about 15 bloggers you admire and inform nominees by commenting on their blog.

Yay!  I actually got double-nominated, so I have to thank fightlikeagirl333 and momofone2010.  Here are 7 things about me:

  1. I have twin toddlers, Flopsy and Curly.  They are hilarious and awesome and I am pretty sure are already smarter than me.  Example:  Flopsy is having a tantrum wanting to watch TV.  Curly stops her and says “No, Flopsy, that’s not how you do it.  Watch me.”  Then she turns to her father and says, “Daddy, can we watch 5 minutes of TV, pweese!” And then bats her eyelashes at him.  We are in serious trouble!
  2. I have a kind of wacky medical history including Thyroid Cancer, Colon Removal, Hysterectomy, Anxiety and Depression.  Good Times!
  3. I love drinking red wine and binge watching crappy TV shows.  I also believe that TV can be good for kids!
  4. I regularly wear maternity pants even though it has been 2 and 1/2 years since I was pregnant.  Seriously, if you see me wearing jeans, ask to see the waistband.  There is a 90% chance it will be stretchy
  5. My favorite color is purple and my favorite food is carbohydrates.
  6. I used to do improv comedy and was professional actor, and still occasionally do theater.  So whenever my husband doesn’t laugh at my jokes I can tell him that people used to PAY me to be funny!
  7. I started my own charity, Mommies In Need, to help sick moms pay for childcare.  If you want to really make my day, go donate a few buck to our Indegogo campaign to help it get started!

And now for my nominations:

drinksandpositivity.wordpress.com

blessings2savor.wordpress.com

lightthelie.wordpress.com

livingwiththreegirls.wordpress.com

thepersistentplatypus.wordpress.com

beautyfrosting.com

asadsongbetter.com

beretolsen.wordpress.com

discombobulatedmom.wordpress.com

kelzbelzphotography.wordpress.com

tinyhumansrunmylife.wordpress.com

martinisandminivans.com

bestbuddiesblog.wordpress.com

twinfamy.com

mominthemuddle.com

Love to all you guys, keep on writing so I have something to read!

 

Mommies In Need Update- Spoiler Alert It’s A Good One!

I just want to take a quick moment to say I am truly astounded by the outpouring of support I have gotten since my last blog post about starting Mommies In Need.  In a little over a week, we have more than doubled our original goal for helping Annie and her family!!!

I was not sure if I could really do this thing, or if I was just being an (even more) insane person.  But you guys are backing me up and giving me the courage to keep going.  The amount of people who have shared the link, donated, or offered to help in some other way is incredible.  I think it has spoken to a real need in society. I have heard over and over again when I explain the idea to people, “I never really thought about it, but I don’t know what my family would do if I got that sick.”  Mommies In Need is growing at the rate that it is because it offers a tangible and relatable service to people who are in an unthinkable situation.

So just to keep you in the loop here are just a few things that have actually happened in the last week:

We have the beginnings of the 501(c)(3) paperwork done.  This is an extremely tedious process but I am hoping to have at the very least the articles of incorporation submitted to the state by tomorrow.   Once that goes through, I can get the rest of the forms to the IRS in the next few weeks.

We have a Secretary and Treasurer for the Board.  We will be having board meetings and voting on measures and all sorts of official stuff!

We have a Mommies In Need bank account where all of your incredibly generous donations are going.  And by bank account, I mean real bank account, not a bag with a dollar sign on it under a loose floorboard.

We now have a PO Box.  Send us something!  I recommend a check made out to Mommies In Need, but you could also send Annie a letter or card of encouragement, a sonnet you write about how generally awesome I am, or whatever else you feel inspired to pass along.  Our new address is:  Mommies In Need, PO Box 601562 Dallas, Tx 75360.

And most importantly, we have raised enough money to fund a Nannie for Annie (sounds like a Dr. Seuss book) for over 2 months!!!  I am amazed and overwhelmed by the generosity and enthusiasm that everyone has shown.

So please continue to donate or have people send checks to our new address.  You can also send me an email at supercrazymommy@gmail.com if there is some other way you want to get involved or just want to be on the mailing list for any and all Mommies In Need info.

I am so excited that we are able to help Annie and hopefully many more mommies like her in the future.  Thank you to all of you for listening, supporting, and sharing! And for jumping on board this crazy train with me!

Jumping for joy!  I'm not currently on the Great Wall of China but you get the idea!
Jumping for joy! I’m not currently on the Great Wall of China but you get the idea!

I’m In To Hire- and You Should Be Too

Some of you may have heard of #ImInToHire.  For those of you who have no idea what I’m talking about you can click here.  Basically, Best Buddies is working on a program to get employers to pledge to hire people with intellectual and developmental disabilities (IDD.)  When I first heard of this I thought it sounded like a great idea, but now it has become a lot more important to me.  Why?

Because I made a new friend this weekend and her name is Annemarie and she is awesome and inspiring and an amazing writer.  And she has Down Syndrome.  I spent the whole day with her Saturday working on her speech for the Best Buddies Ambassador Program, where the Buddies learn public speaking so that they can help raise awareness for people with IDD by speaking at and attending events.  In essence to be an Ambassador for the program.  Hence the name…anyway…

I have written previously about another experience with Best Buddies that you can read here.  But today I want to really focus on just how much we as a society are missing when we don’t see all of the positive contributions that people with IDD can add to this world.  Part of the problem is that many of us don’t have any regular interactions with people like Annemarie.  Because 85% of people with developmental disabilities do not have a paid community job.  Let’s think about that for a moment.  85%.  And that is not because they are lazy or not looking.  I spoke to one very smart and articulate man who has been actively searching for a job for over a year.

Do you know what Annemarie said was one of her biggest goals in life?  Independence.  She wants to be able to be a part of the community just like the rest of us.  Who provides a service and gets paid for her work.  But it’s difficult, because when a person with Down Syndrome or Autism or Cerebral Palsy goes in for an interview, they are competing against people who don’t have a disability.  Even if they are completely capable of doing that job, they are at an automatic disadvantage.  Maybe their speech is a little difficult to understand, or they don’t make eye contact the way others do, or they just look different.  And the person doing the interview thinks, well, it would just be easier to hire the person without an IDD.  It’s not automatic for most people, we need to make an active effort at inclusion.

That is what is so cool about the I’m In To Hire program.  Employers pledge to try and find job opportunities that would be appropriate for individuals with IDD.  One of the speeches I heard on Saturday was from a young man who works at a gym.  He said that he greets people and folds towels and that every day he feels proud because his friends can see him working.  He is really happy to have that job, it makes him feel accepted and like he is a full member of the community.  Helping someone find self confidence and pride in themselves is an amazing thing.

That gym employer could have chosen to hire a college student without IDD who maybe was doing this for a side job and didn’t really care too much about it.  But instead they hired an intelligent, friendly, outgoing young man who happens to have a disability.  And that job gives meaning to his life in a very profound way.

So if you have a company, maybe spend a minute thinking about what positions you have that would be well suited to someone with IDD.  And then perhaps reach out to an organization like Best Buddies and ask them to recommend a few candidates who are looking for jobs in your area and would be a good fit for your needs. Or talk to your HR department and see if you can help facilitate the program at your workplace.

People with IDD are just that, people.  With individual hopes and dreams, and so much to offer to this world.  Please join with me in trying to help make our society one that welcomes them and their unique abilities and enthusiasm. And Annemarie, when you graduate if you are looking for a job, I’m hoping Mommies In Need will grow to the point that I can bring you or someone like you on to help.  Because I can say loudly and with great pride that I’m In To Hire!

Me and my new Buddy Annemarie!
Me and my new Buddy Annemarie!