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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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!

Best Buddies and Brave October

I am continuing my campaign for people to participate in Brave October and as part of that I am trying to push myself to be courageous.  I am really skinny right now (seriously, I’m like all elbows and knees) but I am by no means in good shape.  It has been probably two years since I exercised and more like 3 and 1/2 since I did so regularly.  I have gotten cleared by my doctors to start working out again as I feel up to it (see A Brief Timeline of Crazy if you need to catch up on my many health issues) but with my severe anemia and exhaustion I have not felt like starting.  Also I don’t wanna.  I have never been one of those people who enjoys exercise- I strongly believe that running is only for when something big and snarling is chasing you.

And the truth is I have been frightened to start.  I know I am not very strong right now and actually going to the gym seems completely daunting, and an exercise class is so intimidating- I feel like everyone will stare at me and think I am a huge wuss when I am gasping for breath every 5 minutes.  Now, most people probably don’t really care what the person next to them in class is doing, but the reality doesn’t really matter-I have built this up in my head to a point where I am really anxious about it.

Full disclosure here so that no one thinks I am being sneaky and doing a puff piece review- about half my family is somehow involved in SpeedFlex, a workout facility that opened recently in Dallas.  SpeedFlex is supposed to be “revolutionary” because it is a high intensity workout (you only do each exercise for 20 seconds) and there are no weights, just these cool machines that go off your own resistance.  As my father has pointed out to me every time I said I was too weak or tired to go try it, the machines are even being used in clinical trials for chemo patients and in rehab facilities as well as with training for elite athletes.  I still resisted because a) I’m really tired, b) I’m scared that I won’t be able to do it, and c) I don’t wanna.

Then came the Best Buddies SpeedFlex-a-thon this past Saturday.  They did an all day workout event and for every calorie burned got sponsors to donate money to Best Buddies- they raised over $80,000 which is pretty incredible!  I love this organization (more on that later) and I figured I can’t be all #BraveOctober and then not do it myself.  So I put on my big girl yoga pants and started going in a few weeks ago to build up my strength to participate on my family’s team.  The first time I went, I had to bail after 7 minutes, but I actually felt pretty good about myself afterward.  And then I found that each time I could do more and more, and on Saturday, I did a whole 30 minute workout session and burned 347 calories!  I felt great that I helped raise money for Best Buddies, excited that I was actually strong enough to get through it, and really proud of myself that I was brave enough to workout in front of so many people (the place was packed for the event.)  I also felt a little annoyed because now my whole family gets to say “I told you so,” but that’s a separate issue.

Flexing my awesome chicken arms!
Flexing my awesome chicken arms!

The event was also eye opening for me in another way.  If you are unfamiliar with Best Buddies, please click on that link and learn about them, it is an awesome organization.  They pair people up (like a Big Brothers/Big Sisters thing) to help foster one-to-one friendships for people with intellectual and developmental disabilities.  They start pairing buddies in middle school and continue through high school, college, and with adults.  Having met and talked with a few of the Buddies on Saturday, I can absolutely see how much this program could enrich the lives of both the volunteers and the Buddies.  I spent a lot of time talking to Jeremy, who is a Best Buddies ambassador, and has been with the program for about 12 years.  He is interesting, articulate, and one of the most enthusiastic people I have ever met- seriously his smile is the epitome of contagious!

Tyler was another Buddy who had worked out in an earlier session that day but stood to the side in the room when I was exercising.  Every time I was feeling exhausted or like I wanted to quit, I would look over at him and he would wave and clap and cheer me on, which was almost as good as another B12 shot!  I spoke to his mother and she told me how wonderful this program has been for him in the past few years.  When he came over I bragged to his mom about how helpful his cheering was and his response was, “Yeah, I’m the man!”  Yes, Tyler, yes you are!

Jeremy, me, and Tyler.  I am by far the least cool person in this pic! :)
Jeremy, me, and Tyler. I am by far the least cool person in this pic! 🙂

The Best Buddies program to me is an embodiment of my idea of #BraveOctober.  Sometimes just being yourself in a world where you are different is an incredibly courageous move.  I hope my girls get involved with the program when they are old enough, because, as I have mentioned before, I believe that the best way to raise children who are open-minded is to introduce them at a young age to the fact that people have differences and those are not frightening, they’re beautiful.  I want my kids to be brave enough to loudly stand up for someone with an intellectual or developmental disability because they know first hand what a great buddy that someone can be.