Sigh. Still So Far to Go.

Instead of working on my thesis that’s due in 3 weeks (ugh, don’t even tell me- I know…) I decided to spend my night on Twitter trolling around to see what was being said about the ostomy.

I saw the usual tweets from product distribution companies and for job listings in the ostomy sector, and I also found a few tweets from people who were posting some positive things about their bags. However, my satisfaction in the conversation around the ostomy quickly faded as I came across this tweet from a guy:
Ladies, next time u’re out and u wanna get rid of a guy, just show him your Ostomy.

GIANT SIGH.

It’s times like these that I feel as if all of our efforts have gone to waste.

Does this guy not know I am currently in a loving relationship with a guy with whom I live with who sees my ostomy every day?

Ok, well, no he doesn’t.But he should know that having an ostomy does not change who you are.

In fact, having an ostomy only changes how you go to the bathroom- something most girls tend to keep secret anyway! It’s not like if I didn’t have an ostomy I’d just be going to the bathroom with the door wide open for a guy to see. No! It’s hidden behind a bathroom door just like everyone else!

Hello! Feminine air of mystery.

Now, I don’t want to belittle all of our accomplishments so far, because as you all know by now, we have hit over 4,000 likes on the Facebook page, which is really freakin’ awesome! However, the tweet by this clearly misguided individual is evidence that we have much more to do.

In my state of not doing my work, I also happened to take a peak at the UO Facebook page insights (the behind the scenes data on how the page is doing), and I came across this exciting piece of information:

Do you know why I was so excited?

This piece of data shows that the total number of friends of all 4,048 people who like the FB page is 1,398,293 people. This means that if we were able to get all of our friends to join the Facebook page, we would have 1,402,341 likes!

…Ok, ok, I’m not crazy or anything and I am fully aware that there is no chance of getting all of everyone’s friends to like the UO page. Heck, not even all of mine like it! (…jerks). What this means, though, is if every one of you, who likes the UO page, invites their entire friends list and even 1% of those people like the page, that’s a huge increase in likes and, therefore, a huge increase in awareness!

So once again, I am making a plea to you to share Uncover Ostomy with your networks!

Now, why I am asking you at this very moment to get all of your friends to the FB page? Well, for those who have noticed over the past few days, I have posted some photo updates to the page that gives hints to the AWESOME things that UO has coming up. I have not, and will not tell you exactly what’s to come, but over the next few weeks/few months (before World Ostomy Day), you’ll be getting some more hints and sneak peaks at what we are going to be launching.

And it’s going to be awesome.

In order for it to be as awesome as I anticipate, however, we need some more likes so the message can reach more people.

Now, unfortunately, Facebook has made some changes that don’t seem to let you actually invite your friends to a page. Instead, it let’s you share a link on your timeline to the page by clicking the little screw button on the top right corner of the page. It’s not the greatest thing, but it’ll do (I suppose..)

I would really appreciate it if you could take the time to share Uncover Ostomy on your timeline to your networks so that we can work to extend our UO community. Sharing the link on Twitter and other social media sites like Pinterest and LinkedIn are also appreciated!

It is obvious from the tweet posted above that we still have much to do in order to spread positive ostomy awareness to the public. I also know that what we have in the works for UO is going to help us spread this message even further. However, the only way this initiative can be truly successful is if I have your help.

Thanks guys!

You Know You’re a Crohn’s/Ostomy Patient When..

…you check yes to 12/30 health issues on a clinic history form..

I tweeted this last Saturday while I waited at the NYU Health Services Clinic to be seen for some issues I have been having over the past month.

Now, don’t get all freaked out or anything- my Crohn’s disease isn’t back! I’ve just had some all around medical issues that, because of Crohn’s, no intestine, lack of an immune system, and an ironic immunity to many pain medications, I have to take any issue with my body quite seriously. I’m sure some of you can relate.

I know how easy it is for me to get sick and for that sickness to turn into something disastrous, and so does my mother. Being the caring, loving, and sometimes overzealous worry wart that she is, made sure that before I moved here to NYC, I had the highest medical insurance plan that my university would allow. The comprehensive plan. In case I got sick here in NYC, I would be covered.

That’s all well and good when emergency situations arise. I don’t know much about the medical system here in the U.S, but I do know that emergency situations can get very costly if you don’t have insurance. Lucky for me, my mom splurged for the plan that covers as much as possible, according to the university. Swell.

I was hoping, then, that having this intense health insurance would also come in handy in situations like these; where I’m having issues, when I’m not sure what they are, and when I need them to be diagnosed and fixed before they become too dangerous.

Unfortunately, the one thing my medical plan here in NYC doesn’t have is the doctors who have known me and have been helping me for my entire life. Without these doctor’s, however, no matter how comprehensive my medical plan is, it doesn’t mean I’m going to get help.

Now, I am definitely not knocking the health facility at NYU. In fact, it was great! I was seen basically as soon as I arrived and filled out my medical history form (mind you, that probably took a good 15 minutes..), and the facility was clean and fancy. Everyone was also extremely friendly.

My issue, however, wasn’t any of their faults- it was simply my own.

After explaining the issues I have been having over the past month with the doctor who had taken my case, I then dove into the short version of my medical history. Crohn’s disease, hospital stays, medications, diets, anemia, ostomy, etc etc. I explained all of this, the doctor took some notes, and then they took blood.

Great. Awesome. Monday, they said, I’d have my results back and we could go from there.

Monday morning I get the results of my tests and advice from the doctor I have been dealing with. I am told my tests results are normal, though I should probably get them checked again in 6 weeks (if there are no abnormalities in my tests results while the issue is going on I doubt there will be a change in 6 weeks, I thought…) and was also told that I should do some things that I had explained I was already doing.

Awesome.

Needless to say, that visit to the clinic was useless.

I get pretty frustrated with the fact that I constantly get sick with random things here and there. It’s even more frustrating that, often, these random things are things that can’t be left alone in fears of the issues getting bad, or in the worst situation, the issues exacerbating my Crohn’s disease. I am probably the most frustrated, however, when I have to explain my entire medical history from beginning to end to a new doctor.

So, in order to make sure I get back to being healthy, I’m heading back home to Toronto for a week and a half to see the doctors that have had to deal with me for so many years. There’s n0 guarantee they’ll know what’s going on either, but at least they have some contextual background to use for my diagnosis.

Upside to all of this? I get to spend tons of time with my mom and boyfriend, both of whom I miss very much.

Cup half full.

Cup also half medical anomaly.

Thanks comprehensive medical insurance, you’ve been great.

Hey Media, I Have A Story!

Two days ago I was contacted via Twitter (@JessGrossman), and my Facebook… and the Uncover Ostomy page by a reporter named Jonathan Sher from the London Free Press in London, Ontario.

He reallllly wanted to get into contact with me so that he could write an article about the campaign. I could not put it into words how grateful I was that he wanted to help spread the word.

Since we started this in 2009, it’s been extremely hard to garner the attention of the media. For some reason, no one wants to write about bags! (Ok, I guess I understand why… but that’s the reason I started the campaign!) So whenever I am approached by someone who has a voice, someone who can help spread the word beyond my capabilities, I am in their debt.

Today, the article was published with amazing response!

Following this article, I was messaged by a guy from 106.9 the X radio station in London who also wanted to interview me!

This is why the media is so important, one article can help snowball the message to others which will spread the word to even more people!

It’s been a difficult process, getting the media’s attention, but slowly, we’re getting there.

If you want to hear the interview (not sure if it’s live or not) I’m calling him in about 3 minutes (2:30pm EST). Edit: I was told it would be on the 5pm newscast! You can listen here

Keep spreading the word!

3000 Likes on Facebook!

Yessss we did it, we hit 3,000 people on our Facebook Fanpage!

AMAZING!

Ok, some of you may be thinking, wellll 3,000 really isn’t that great in comparison to some of the other pages out there like, Starbucks with 23 million likes, or Boo the dog with a million likes… But for a fanpage about bags? 3,000 is pretty freaking awesome.

For those of you who haven’t really come across it yet, the Uncover Ostomy Facebook Fanpage was created alongside this website to continue to spread awareness through social media. I use it as a flag for when I post new blogs or when we have new pictures to share. It was paired with my personal twitter account (@JessGrossman), my personal YouTube account, and the Uncover Ostomy YouTube account. Though it was created simply to spread the word through another online medium, it has grown into so much more.

Every time I check the page, I see another post from an ostomate either asking an ostomy related question, asking simple advice, posting pictures of their proud stoma friend, or just posting supportive comments to others. It has really grown into an amazing online community; something I never expected.

If you haven’t seen it yet, what are you waiting for??

I want to say thank you to everyone who has joined and not only invited their friends (ostomates or not), but to those who have really come together in the community.

It’s not over though! 4,000 likes is only a few clicks away- keep spreading the word :]

I Don’t Think This Even Deserves a Title

In 7 days I will need to have accomplished:

  • Celebrating my brothers birthday with him… a night out at a bar..
  • Writing 4 essays
  • Packing up my entire room to move out of my sorority house
  • Not having my brain explode

I realize the first one isn’t a stressful event, in fact, it sounds quite enjoyable. Unfortunately, when I have 4 essays to write and I have to be there, it kind of is. I love him, though, so obviously I’m going to be there/I planned it…

I also realize this is a cop out of a blog post.

I also cannot stop thinking that I need to cite my sentences.

Pretty much, I’m blogging just to say that not only am I drowning in the sea of life at the moment, I won’t be able to swim ashore to blog again until I finish up the last week of my undergrad.

Wow, that sounds really weird to say…

If you can’t handle not hearing from me for a while, follow me on twitter:

http://www.twitter.com/jessgrossman

I can guarantee there will be some delirious tweets as the week comes to a close.

Enjoy.

——

PS there’s also a new video posted on the UO facebook fanpage

Sooo Close!

So

The fanpage has 1906 fans. 94 away from 2000. [I can do math, who knew]

Pretty much, I want to make it to 2000 fans by the end of the weekend.

Can we do it?

I think so.

———————

So I ask [very nicely] pleaseeee:

 

1. If you just read the blog and have never actually became a fan of the facebook fanpage, pleaseee do

http:/www.facebook.com/uncoverostomy

 

2.  Already a fan? Suggest it to all your friends! [If you've already done this, try again because some people will join the second time you invite them. Also, think about the new friends you've added since the last time you invited people]

 

3. Don’t have facebook? [Get it?] Or just send out an email to people you know with facebook to add it themselves for you :]

 

Also, for those who have twitter, follow me @JessGrossman

I use it to update when I’ve posted a new blog but ALSO I retweet IBD awareness information, funny quotes and things, spark discussion, and I post a lot of pictures too. So if you’re looking for someone fun to follow, pick meee

Thanks guysss <3