Eye opening

[dreamintwilight]

So...since being diagnosed with Crohn's disease I find it funny that there are STILL people on Facebook that haven't a clue that I have Crohn's or was even sick.

I mean...I've been to the hospital twice now and the husband usually keeps Facebook updated pretty well whenever that happens (especially the first time when we didn't even know what was wrong with me). So, it just seems funny to me when I post a status about getting some sort of routine blood work done and someone says "Blood work!?!?!" These aren't people that are only on FB every once in a while either.

I guess in the past 4.5 months since all the complications started I realize who actually cares for me and it's somewhat depressing to find out. Most of the people who have taken the time to leave me any sort of message along the way were people I never thought would have cared. Those that I thought would care more haven't reached out at all. It can be very disheartening. And I have issues with friends abandoning me in the past, so I guess it bothers me more than it should.

I'm doing the local walk for the CCFA this coming weekend and have been collecting donations for it. Honestly...NONE of my friends from back home have donated! Most of my donations were from my parents, people from the forum, and maybe one or two people from college.

I guess I shouldn't take things personally, but it's really hard. I guess one good thing to come from this disease is the awareness I have now for others who suffer. Imagine how much funding could go towards better research not only for Crohn's, but other disease research if everyone we knew donated $1 to good causes. I'm not trying to say people are lying about being able to give money, but many people say they do not have money to donate and then go get a manicure the next day or have a few drinks at the bar. Or then there's the whole mentality of "Well, I don't have to give, but I'm sure plenty of others will."

I don't know...this post is pretty random and scattered and I know I'm the one being selfish just by thinking all of this. Sometimes I just wish people from "real" life would care as much as the people I have met on this forum do!

 

[CrohnsHobo]

You just have to keep pestering people. When I did Team Challenge last winter I went through all of my facebook friends profiles and pulled their email address (even people I rarely talk to that I went to HS with many years ago) and then I sent them an email. I cross posted regularly to facebook and myspace and I asked those people to forward my message on to others they knew. I ended up raising a$2,824 and my company matched that for $5,648. It just took a lot of nagging. I felt bad about it at first, but it is for a good cause. Below is the email I used, maybe you can customize it to help you a bit. As I trained and raised money I emailed out regular updates.

Many restaurants will also offer portion of bills for a night to a charity as long as people bring in a flyer. I did this and it added some extra cash. You could offer something like baked goods or a certain dollar donation. Try to find something to raffle off maybe.

Unfortunately, I donated $600 of my own money last winter so can't really do more at this time.

Dear Friends and Co-Workers,

I have recently decided to take on a new challenge that will require much dedication, determination and perseverance. I can hardly believe it, but I have decided to run my first half marathon (13.1 miles).

As I am sure I have shocked many of you, I will be completing the 13.1 mile race to raise funds and awareness for research leading to a cure for Crohn’s disease and ulcerative colitis. Over the next 4 months I will be pounding the pavement, running and raising funds to find a cure for this disease. I am one of over 1 million Americans suffering from Crohn's Disease or Colitis. At the age of 16, I became very ill and lost 25 pounds in less than 6 weeks. I spent time in the hospital and was finally diagnosed with Crohn's disease. I have experienced chronic pain every day since and am now 31 years old. I will have Crohn's disease for the rest of my life, as there is currently no cure. The available treatments can, at best, only mask the symptoms of this disease. Every day is a challenge, but with your donations we can make a difference for millions of sufferers of all ages and races.

Crohn’s disease and ulcerative colitis are known together as inflammatory bowel disease (IBD). Crohn’s disease and ulcerative colitis are painful, medically incurable illnesses that attack the digestive system. The cause of IBD remains unknown. However, the effectiveness of recently developed treatment methods and steady advances in research brings us closer every day to finding the cause and probable cure of Crohn’s and ulcerative colitis.

My goal is to raise $2800 for Team Challenge and the Crohn’s & Colitis Foundation of America, as well as finish the race in one piece. Over 80% of every dollar I raise will directly fund the mission of CCFA, to cure Crohn’s disease and ulcerative colitis, and to improve the quality of life of children and adults affected by inflammatory bowel disease.
I have made a commitment to run this half marathon and bring us 13.1 miles closer to providing hope and freedom to individuals battling IBD. I am hopeful you will join me in the fight against Crohn’s disease and ulcerative colitis.

You can help by visiting my webpage at:

http://www.active.com/donate/lv09sandiego/vegas09CAuger

and donating generously to the Crohn’s & Colitis Foundation of America. Please make donations by October 15th, my personal fundraising deadline.

You will receive a confirmation of your donation by email (which you can use for your taxes) and I will be notified as soon as you make your donation.

OR send a check payable to “CCFA” with my name in the memo!

{my address}

[I then included some info on the matching program for my company for the email I sent to co-workers]

On behalf of the Crohn’s & Colitis Foundation of America, thank you very much for your support. I greatly appreciate your generosity.

P.S. I would appreciate it if you would forward this email to as many people as you can to encourage them to donate as well. Thanks again

With gratitude and appreciation,

Chris Auger

Join this fight! Reach out! Make a Difference! Every bit helps!

 

[dreamintwilight]

That's great Chris! I did send out some e-mails (unfortunately my address book isn't as updated as my FB friends list, so I've been doing most communication there). I've been sending statuses every few days. Today I sent out a massive event invitation to people. So, in the off chance they missed my thousands of status updates, they get it delivered straight to their homepage.

Maybe it's an age thing. I find more people that donate are older than 20s in age. Perhaps they are more "stable" in their financial state and are willing to give some money because their priorities are a bit different too. I will definitely keep your sample letter filed away. I plan on doing the Team Challenge some day and will bring out the big guns for that!

 

[CrohnsHobo]

Well facebook lists your friends email address so you can pull it from their and make an address book for the event in your email program of choice.

Most of my close friends did not donate a dime. It actually ended up being people I had not seen in many years, their friends/people that got my email forwarded to them.

When is the deadline for yours again?

 

[shazamataz]

Hi Marisa, good on you for doing the walk! I hear you a bit about who seems to care and who doesn't. It can be very hurtful when the people you are closest too don't seem to care at all. I haven't spoken to my 'best' friend (one of two) in months. She knows I have been sick, though I'm doing okay at the moment.

Last time I spoke to her my dad was really very sick and just confirmed that he had Lymphoma. He nearly died from pneumonia and, at that time, we thought he may only have months to live!

When i told her that, she said 'Oh well' and then mentioned her granma being a little unwell at the moment and that everyone has to die some day. This is my father and best friend in the whole world!!!

We haven't spoken since and it is hard as I have had so much happen these past few months. I am not a downer who talks about problems when i see my friends and am upset that it seems that since things are a bit tough for me, she just isn't interested. meanwhile, others who I hardly know have been brilliant! Interesting eh?

I hope the walk is an awesome day for you

 

[dreamintwilight]

Chris - Deadline is this Sunday! :-D

Shaz - Thanks for writing! I haven't seen you on here in a while. Miss your kind spirit on the forum! Sometimes I think the people that are supposed to be the closest to us take for granted the support we actually need in hard times. Maybe they think it's implied or something. I know for me it really lifts my spirits when I hear words of encouragement or to know someone is thinking about me. I try to do the same for others, even if it's from someone I rarely ever talk to. I really do value all the wonderful and genuinely empathic people I've met on the forum!

 

[CrohnsHobo]

Oh that is super close! Best of luck and I hope you can make your goal.

 

[dreamintwilight]

Yeah, right around the corner :-D Well, I already reached my personal goal of $250 (thanks to Shantel AKA Peaches!). But my husband hasn't reached his goal yet. So, I'm trying to help him out too since we are on the same time and all. Haha. It should be a fun time anyway. We found out about the walk last month, so we didn't really have a long time to raise funds. I plan on doing it again next year though and hopefully we can do more fundraising activities and such. And once I get into running shape I'd like to do the Team Challenge eventually!

 

[CrohnsHobo]

And once I get into running shape I'd like to do the Team Challenge eventually!

The training program they offer is really good. They outline it so you can walk, run or wunner (walk/runner). I walked most of it. I had to pop percocets and immodium before the race to get through it though. I was really sick at the time, not sure why I didn't wait until I was out of a flare to do that.

 

[dreamintwilight]

Aww, haha. Well, it makes for a more inspiring story, Chris! Yeah, I've been wanting to get some new sneakers too. The ones I have I think are too small because every time I walk in them I get shin splints. I've heard there's a New Balance store near where I live where they can personally fit my foot. So, I might go check it out and see what they say. I've read a lot about fitting your foot according to how your foot pronates, so I'm curious to find out if I do.

 

[CrohnsHobo]

Aww, haha. Well, it makes for a more inspiring story, Chris! Yeah, I've been wanting to get some new sneakers too. The ones I have I think are too small because every time I walk in them I get shin splints. I've heard there's a New Balance store near where I live where they can personally fit my foot. So, I might go check it out and see what they say. I've read a lot about fitting your foot according to how your foot pronates, so I'm curious to find out if I do.

They did that for the Team Challenge thing too. We went to some running store as a team and then helped everyone get the right shoes. My shoes are retired as am I from my running career. :tongue:

 

[dreamintwilight]

Really?? That is awesome! Your team was hardcore! Haha. How many people were on your team?

 

[CrohnsHobo]

I would say there was about 20-30 of us. Night before the race they had a big dinner for all the teams from around the country. Some really big teams. The announce the top fundraisers, some guy raised $38K

I don't know how people do it. Lots of people over $10K.

 

[dreamintwilight]

That's crazy! Sounds like a really awesome event to be a part of

 

[CrohnsHobo]

It is. I am glad I did it. I'd do it again someday.

Would love to do the one in Hawaii, but it supposed to be one of the harder ones. Hilly and Humid!

 

[kello82]

aw dreamin i am so sorry

i know how it is kinda. i have girlfriends that i have had since elementary school that are not as nearly supportive as people i have only known for a year thru this site. and yes, it is a confusingly hurtful feeling....
and then some friends who i would NEVER expect of being interested and concerned about what is going on with me, not just looking for the hot dish, but genuinely wondering whats up, have emailed me on facebook wondering what the photos of my belly are and actually research crohns and ask about it and want to know more!
like seriously, i had a guy that i barely spoke to in high school message me and talk in depth with me about it all. he knows more about me in that sense then my best girlfreinds do!!
very strange.

but i have also realized that.....the people who appear....weak? in disease and injury get more attention than people who appear stronger?
you know what im saying?
i think when you give off that impression that everything is ok (like many many of us do on here), people dont really think youre that sick.
when in reality you are horribly sick but the only way to cope with it is to find the light in life.
i find that other people dont know how to do that, so they go in for appendix surgery and get crazy love and attention because their illness seems so severe and difficult, cause they dont know how to keep going despite it. where as we HAVE to keep going cause this is our lives forever, you know??

i try to remember that this is actually a very good thing, that i have learned these skills of coping, but....still doesnt make it feel any better i guess.

 

[dreamintwilight]

You are right, Kello. I've had some great in-depth conversations with people from high school I was never really close to then about Crohn's and some of my "best friends" haven't asked me at all about what's been going on with me since getting diagnosed.

It is funny how things work out. I hope I get to meet some of the people I've become friends with on here. I mean it's sorta cool to think about how we can support each other during one of the most significant events in our lives!

 

[whysoserious]

Good luck on meeting your goal dreamintwilight! I know exactly how you feel in regards to finding out who truly cares about you. This girl who I had been best friends with for years didn't seem to care much at all about my illness, and instead only wanted to talk about her problems. I'm not one to think that my problems are greater than others, and I try to always be there for my friends, but this girl acted like she had a completely terrible life when she really had very minor problems. When we talked the conversation always ended up being about her. I remember getting out of the hospital and going home and hearing all about her latest problems and thinking "does she not care at all about me?". Eventually I re-examined our friendship and realized she wasn't a good friend at all, and I had just chosen to ignore it. (That and she did some waaaaay messed up things regarding my husband. :voodoo: )

As much as situations like these hurt, it's for the best. If someone doesn't care enough to check up on you, it's really their loss, not yours. From reading your posts, you seem like a nice, funny, caring person, and if other's aren't going to appreciate you for that then they don't deserve your friendship.

 

[dreamintwilight]

Thanks WSS I agree with it being their loss and not mine, but it sure can get lonely sometimes with no one to hang out with! Haha. I miss having girls' night out!

 

[ameslouise]

Hi Marisa - It really can be eye-opening when you see how people react differently to your disease. You are young, and probably have alot of young friends. You haven't started to see serious disease in each other yet. Your friends might not know how to react properly to a chronic disorder. Try not to hold it against them if they don't. They might be scared for you and not sure what to say; they might not understand the magnitude of the disease or how debilitating it can be. You should feel comfortable saying, "I know I look fine, but I am very sick right now and I really could use your support."

If all else fails... we are here for you!!! xo - Amy

PS Good luck with the walk! Hope there's plenty of porta-johns along the way!

 

[dreamintwilight]

Thanks, Amy Haha...I never thought about the port-o-johns! Wonder if they will have them along the way!