Buncha thanks!

Well considering it’s been a long time since I’ve written I have a lot to tell you all, assuming you were all wondering what’s been going on in¬†this glamorous life of mine ūüėȬ†I just downloaded¬†the WordPress app on my phone since I had gotten a new one and some of the comments people have left since I’ve been on last have definitely made me want to be more active again on this. I miss my fellow Crohnies on here!

Let’s start with the totally awesome news! My doctor did a colonoscopy and my disease was still active but much more mild. Because of this I am still doing the Entyvio infusions once every eight weeks. (side note: anyone on Entyvio- a fairly new drug- experience sever fatigue the 24 hours after infusion?) And just a fun fact, it was my first colonoscopy EVER that didn’t send me into a flare! Woohoo! That was back in December. Since then, I have gotten even better. My exhaustion is slowly going away. If you’re a Crohnie you know¬†this could possibly be the biggest miracle ever because some people in remission still have that lag, especially if you’re on an immunosuppressant . I am back to working out at least four days a week and eating pretty healthy. I also started taking krill oil and a probiotic (the really expensive good quality ones you have to keep in the fridge, I don’t recommend taking the cheaper Walmart shelf ones). I really think these two things have helped aid in me feeling so good. I have gotten past my rebellious “I took so many pills for the first fifteen years of my life I refuse to take anymore!” stage lol. I realize how much these supplements help me. I do not take a multivitamin though, and I have my own personal reasons for that… Which I actually am probably going to write another blog on in the future. But anyways, it’s so nice to experience having energy. This sounds pathetic but I really never realized in my 22 years of life what it felt like to get through a day without being fatigued. It’s great!

Onto another topic, I have so many people to thank in my life lately. One being my mom, as you all know she’s my best friend and been my rock my whole life. But people have really stepped up to the plate per say in being a friend and being¬†more active in my life. And I have tried my hardest to return the favor.¬†I’m not going to name names because you know who you are if you’re reading this. I’ve had some of the same friends for a while now, girls and guys, and as you get older you appreciate those relationships more. You also learn who to trust and who will be there for you. I’ve done that this year and I’m very lucky to have some of these people in my life. So thank you!

I’ve also kept in contact with my old doctor from Boston Children’s which I think I’ve mentioned before. And even though he’s now across the country, he deserves the recognition. He helped me through some of my hardest times a few years back when my disease was at its worst. He dealt with several hospitalizations, arguing with Springfield doctors with the egos the size of Texas, me crying my eyes out laying in the hospital bed, along with all the frustration.¬†I am so lucky to not only have been treated by him but developed such a good patient-doctor¬†relationship with him. I truly appreciate everything you’ve done for me Dr. Essers! (If you are reading this that is haha).

Another person I owe a big one to is my current doctor. He’s probably the only reason I still have all of my intestines and I’m not pooping into a bag. He’s worked so hard on my case, tried so many different medications, consulted with people across the country for me (per my mom’s request at the mayo clinic lol smh). He’s also been a huge help with my transition from pediatrics to adult medicine. I’ve also developed an amazing relationship with him as well. I’ve been so lucky with the doctor’s I’ve had, and honestly I owe my life to them. They aren’t only phenomenal doctors but amazing people!

I just felt the need to thank these people. Without them I wouldn’t be half the person I am today! I will be back soon to write but in the mean time all my New Englanders stay safe with this crazy weather coming our way!

-xoMichelle

Pushing Myself to the Brink

So today was my first infusion of Entyvio. This may sound like a foreign medication to most, and well that’s because it is. It has only been FDA approved since May and then came out in June. I knew this day was going to come that I’d start on my last option (for now), but I just wasn’t sure when. Starting a new medication for me is not exactly a new thing. I have been on almost everything in the book as you all may know from my previous posts. This medicine is a lot like Tysabri (which is a bit more popular, used for CD, UC, and MS) except it doesn’t seem to have the side affects that Tysabri hentyvioas, especially the PML virus which is scary as hell, look it up. When my doctor told me that it was relatively low risk and an infusion once every six weeks I was in! I’m always excited to start on a new medication because it kind of gives me¬†a new light on things, “maybe this will work” goes through my head every time. But this was a little bit different.

I am having so much more pain than normal. I’ve been on prednisone for a week now and usually I am eating the whole household and feeling like a million bucks. Not this time, something is different… I was keeling over with pain this past Sunday and had to resort to pain medication, which I hate to admit. I hate the thought of having to take pain medication, I can usually silently manage my pain and most of the time the people around me wouldn’t even know. Not lately, it’s been pretty unmanageable pain. And the worst part about it is I’m having flank pain too¬†as they call it… Aka possible kidney stones. Wonderful.

I can literally feel my insides swelling. I’m not talking bloating I’m talking tissue swelling. It sounds gross but it’s pretty damn uncomfortable. I eat and I swell. It’s been off and on but also been making me¬†a little nervous that something else is going on. Hopefully not but we’ll give it a little while for this prednisone to work some more and then figure it out.

This all makes me nervous because I am finally ready to grind down and go back to school full force this fall. I have my classes set-up and start next Tuesday towards applying to the nursing program this coming spring. This weekend is also my 22nd birthday and I was hoping to get out and have some fun! I probably will, becIMG_8188ause that’s what I do.. I push myself even when I don’t feel good. Sometimes probably a little too hard but oh well. Like I say “it’s my life, let me live it”. It’s actually KILLING me right now to be sitting in bed exhausted and in pain because I bought some new Nike sneakers and gym clothes today on my way home from my appointment and all I want do is try them out! Lately going to the gym has been the only thing mentally keeping me going. It’s my happy place to feel good about myself and blow off some steam. Even if that only means speed walking on the treadmill and lifting 5 lb. weights¬†(when I’m having an off day physically). Actually I might do that later tonight. Hopefully I’ll be feeling a little bit better after a nap.

It’s frustrating having to be cooped up. I mean I don’t have to be but my body just reaches it’s limit sometimes and I have to take a step back. I’m not sure if lack of sleep because of prednisone¬†or the new medication¬†that¬†did it to me today but I can barely function right now and these hot flashes (prednisone side affect) are god awful. Today I wanted to make it a fun day in Boston with my mom after my appointment but prednisonemy body was telling me otherwise. We headed to the Wrentham Outlets after I was done with the infusion and it lasted about an hour. I was so fatigued,¬†nauseated, and¬†swollen¬†we had to leave. Not to mention my extremely crabby attitude and mood swings (also due to prednisone) didn’t exactly make for a fun time.

Now, this is all just a waiting game. Pushing through each day while I wait for my body to hopefully react in a positive way to Entyvio. I have another dose in two weeks, then four weeks, and from then on every six weeks. My doctor told me it could be up to three months to see how much it is potentially going to work. I’ve decided though, unless I am in the hospital I am not going to let it keep me from school this time. I will not withdraw this semester, actually even if I am in the hospital, I will do whatever I can to keep at it. I need to, for my own mental well-being.

Having an invisible disease is wearing on the mind. Very wearing. People assume because you look good and push yourself that you’re fine. I don’t blame them because how would they know unless they’ve experienced it? Sometimes¬†though¬†I just want to have them walk one day in one of our [Crohnie’s] shoes. It would probably change their life, actually not probably, it would change their life.

-xoMichelle

 

 

A Little Complaining Does the Mind Good

You might ask why I am up right now.. this early, it’s 6:15am here in Mass. Well, it is because my joints and bones have been yelling for help the past 2 hours. Actually, not just yelling they are full out screaming. The pain I am in right now is agonizing, I don’t know how I’m really even thinking. Although my knees and hips¬†are in¬†the worst pain it’s all the way from my knuckles to my toes. It is more of an annoyance though because there is not a medication or anything that will make it go away. Rubbing and massaging my knees and legs helps, but it’s hard to have the patience to do it myself. I feel like an old woman, and if you¬†are a¬†Crohnie you know exactly what I’m talking about. It is probably my own fault though (in combination¬†with¬†getting ready for the clinical trial having¬†to make myself sick basically) because I haven’t been taking my glucosamine and chondroitin, man that stuff is a miracle worker. I was on a good stretch of taking it but then sometimes popping huge horse pills every day can get just old. Until you soon remember the reason you started taking them in the first place that is..

I have been wondering, this is for my fellow IBD patients… I know joint pain is very, very common with IBD but do any of you get bone pain? When I say bone pain I’m talking a severe aching pain coming from inside of your bones. Yes it is as bad as it sounds. When I was on Tacrolimus I would get this agonizing bone pain and my doctor never had an explanation for¬†(along with them not knowing a lot about a lot of¬†the other side affects we have). I would be up all night long tossing and turning, face cringing, and sometimes even tears completely out of my control pouring out. I am not exaggerating on this one either.. It’d get so bad I’d make my boyfriend (at the time) stay up and rub my legs for hours (where can I find another one of those?! :p)¬†My¬†doctor¬†then one day told me he read something about¬†that medication¬†causing bone marrow to swell and it would get worse with weight bearing. Which was exactly my case. This kind of made me cringe, I didn’t even know bone marrow could swell. But then again, pretty much anything in your body can. But I’ve been off of this medication for¬†quite some time and I occasionally still get this awful bone pain, like right now as we speak. My doctor told me once it might be¬†fibromyalgia… And I laughed in his¬†face, not literally but I wanted to.¬†I know that is just¬†a label for people having pain that the doctors¬†don’t know how to explain, he basically even told me that.¬†Anyways, I’m starting to think it’s¬†just the¬†Crohn’s itself causing it. Any thoughts?¬†

This actually probably isn’t early for all of you other people out there who have work and are morning people, but not me.¬†Not that I’ve ever been pregnant before but I could probably compare it to morning sickness..¬†It sucks. Most of the time I can’t eat till noon or later. thankfully this prednisone has kept my appetite. But some more complaints just because I’m pretty damn frustrated right now. I got this stupid itchy rash (assuming from the prednisone, I get it at least once every time I’m on it) so I stopped taking it for¬†a couple days. Shhhh, my mom’s going to kill me. Consequently I started having bloody poo. Yeah disgusting. But this is probably the worst side affect I get. When it happens my stomach/abdomen area is in an awful amount of pain. As you could imagine, having canker-like sores all over your insides that are bleeding. Ouch. Well I decided to take 20mg of prednisone last night, rather than my usual 10mg, to kind of kick myself out of it. When I came off of it for a couple days it was pretty bad, not sickness wise, but the withdrawal side affects I’d like to call them, if that makes sense to you. It’s like my body is going through a withdrawal. Now, I know your not supposed to come right off of prednisone, but 10mg was a safe dose to do this from (just so you all know). I started getting acne like a 14 year old boy going through puberty… Not fun.. Or attractive. Hoping this 20mg will help a girl out and clear my skin up.

This post has been kind of boring but I felt the need to complain a little bit. Get it all out. Annnd I just had a hot flash.. Yeah prednisone does that to me. It’s amazing how fast the steroids actually work. This is kind of random but I’ve been thinking about how much my disease has evolved and changed over the years. Six years ago when I was in high school I had pretty much all different symptoms than I do now. It’s like¬†an episode of NCIS where they think they have the killer the whole time but then realize it’s¬†the wrong person. They have to solve the mystery all over again.¬†I never had the pin point and all over pain in my stomach like I do now. I also never had as much nausea as I do now. It was more stomach aches, the sweats (I never showed a fever unless I was deathly ill because of all of the immune suppressants I was on), and lack of appetite. My joint pain wasn’t nearly as bad, but then again that probably gets worse with age.

Well, I’m getting pretty tired. Oh, I almost forgot! I have my first appointment to fill out paperwork, get blood work, and learn how the trial is going to work on Friday in Boston! I scheduled my fecal transplant for next week! Counting down the days to potentially feeling good, but not looking forward to that fun colonoscopy prep! *sarcasm* It will be one of two in a very short period of time. I hate those things. I’ll let you all know how it goes though! I’m going to try to get some more sleep and get my mind off of my aching limbs.

-xoMichelle

A New Light on Life

My blog has been pretty consistent with my life with Crohn’s disease along with¬†the complications and obstacles us Crohnies endure. I haven’t posted much lately but I’ve been doing a lot of thinking. Turning in a different direction, I’ve been thinking about how our struggles can relate to others and also how worse life could really be.¬†Even though I have been sick majority if not my whole life, I couldn’t be more thankful for the live I live and the people in it. I was standing in line at the physical therapist with one person in front of me. He was rambling on about how this is a big year for him and his family, his daughters were turning 13, 18, and 21 and graduations and college and so on. But then he started talking about himself and his biggest accomplishment this year was his five year mark of being cancer free. I stood there and beyond my control a smile came on my face. I got the chills, he was so happy and I was silently so happy for him. It kind of hits close to home.

My mom was diagnosed with thyroid cancer almost four years ago. You usually hear of people her age being diagnosed with breast cancer, ovarian cancer, and awful sounding things like that. This wasn’t something you heard of everyday… Or at least we hadn’t, up until then. She broke the news to my brother, my dad, and me first of course. I was standing in my kitchen just me and her because my brother was away at college at the time. I could see¬†on her face something was wrong. Every horrible thought raced through my mind before she even said a word. Her eyes welded up and I¬†didn’t hear anything other than the word “cancer”. I got the biggest pit in my stomach. You never think anything like this is going to happen to you, or even worse the ones you love the most.

The reaction from most people was “Well, if you have to have cancer that’s the best kind of cancer to have”. The disgusting thing about this statement is these people weren’t making a joke, they were serious. I don’t care what kind of cancer you have, NONE of it is good, and unbeknownst to them we soon later met someone who was fighting the same thing and is now losing her battle. It’s scary thing to think about. Thankfully having my experiences of treatment in Boston, my mom decided to go that route as well. This could have been the factor that has now allowed her to be cancer free. She had her thyroid along with a whole ton of lymph nodes out. She barely has a scar. Her surgeon was great. As the next few years go by and she undergoes radioactive treatment we looked to the good of it all. We dealt with it and moved on. Although she is “cancer free”, cancer is never really “gone”. It’s still an everyday worry.

Having experienced this gave me a new light on life. Although her battle with thyroid cancer was pretty quick, it’s still an everyday struggle. She now lives with the complications of living without a thyroid. Gaining weight, hot flashes, calcium problems, and many other side affects. Constantly switching medications and visiting many different doctors she now has to deal medically with¬†herself¬†along with two sick kids¬†(my brother has Crohn’s too). I don’t know how she does it. She is an amazing mom and can juggle a million things at once. She hasn’t had an easy run her life and you’d never know it. Many people now a days, I hate to say it, but are so selfish, she is the most selfless person I know and I couldn’t be more proud to have her as my mom. I hope I can be even a little bit like her when I’m older.

Image

These past four years has made me realize how much life we have to live.. Or how much we potentially don’t have to live. Overall, I have little worries and try to live each day to the fullest. Being sick, this is tough. But you might not be alive to see tomorrow. Money is money and it’s here to spend.¬†I’m not saying I’m not careful or irresponsible but my point is our bodies are unpredictable and do crazy things and living life is why we’re here. We’re here to do amazing things, love each other, argue, be support systems, and just be crazy! I challenge you, go out this week and do something you’ve never done before. I don’t care if you’re sick, if you have cancer, if you’re completely healthy, or¬†if you have a broken leg. You can do it, and it’ll be worth it. Go embarrass yourself, and have a good time doing it.¬†Be carefree for once. These are the kind of things that have kept me sane. Laughing and being crazy from time to time which my mom has been trying to teach me all my life.. it does wonders because as sick as you are, having a healthy spirit and mind is the most important thing. Laughter is the best medicine.

Listening to that man in the physical therapist office ramble on and talk about his kids and how excited he was, is really amazing. It’s exactly what I’m talking about here. I could tell he just had that zest for life. He was a cancer survivor and there’s nothing more rewarding than that. I might be sick, and there might not be a cure so yeah¬†it’ll be¬†a life long battle. But I’m here to live the crap out of this life, pun intended ūüėČ And you should too!

 

-xoMichelle

 

p.s. I was nominated for a blogging award my a fellow IBD blogger¬†and my next¬†post tomorrow will tell you more about that and show my appreciation! Thank you thank you thank you!!! ‚̧

 

I’m Famous! Or Atleast My Dr Says So..

Being¬†the topic of my doctor’s, as well as all the other¬†top GI doctors in Boston’s,¬†“complicated patients conference” I’d like to call it¬†I didn’t know how I should feel about that.. (But it does pretty much mean I’m famous ūüėÄ ). I guess in some ways I was relieved for him to actually admit I have a complicated case after failing more meds and treatments than I could count on my fingers and toes. I met a doctor fromImage Ireland working at The Brigham and she was really good. I know my doctor struggles and he tells me sometimes he doesn’t even know what to do or why something is happening but it was nice to feel as if someone else was concerned and genuinely interested. As you all know I’ve been feeling good. Well, that is about to end. In order to be entered into the clinical study I have to have a Harvey Bradshaw score of at least 5. Which in short means, I have to be pretty damn sick. They measure this by your symptoms and the severity of them. My¬†HB score right now is zero meaning I am in clinical remission. My doctor decided to rapidly wean my prednisone dose. This is bittersweet for me. This in fact means, I will get my skinny face back… But, I will also get back my overly skinny body, exhaustion, fatigue, potty emergencies, nausea, and just plain ole feel like crap. I am not looking forward to this to say the least. But, like I say it could always be worse. And if trying a new treatment that may potentially make me feel good means feeling like crap for a little while well,¬†then I’m down. Gotta give a little to get a little.

I’m going to be all over the map on this post because my heads been all over the map lately. Tonight’s got me thinkin’. Thinking back to my relationship post. Trying to have that mindset now. But there’s something different everyday for me. Yesterday it was my back, today I was really feeling my kidney stones.. How the hell is someone going to deal with me haha. Really though, god bless them! Hopefully I’ll find it someday. But,¬†it’s hard enough to even get a date around here¬†with a decent guy. It’s so frustrating! Never mind¬†I have to try¬†to explain myself and why¬†I don’t go to school and just work at a froyo shop and a local vodka company. Sick girl probs at their finest. It’s hard to separate other reasoning why someone doesn’t want to be with you or why something doesn’t work out from just the fact I’m sick. I’ve had people who couldn’t deal with it and now it’s the first thing that I jump to when something doesn’t work out. I don’t know why but that’s what I do. Right now my face is about twice the size it normally is (hence¬†“moonface”) and meeting new guys is terrifying because I think everyone can notice, even though they really probably¬†don’t.¬†I just relate everything back to it which I shouldn’t do but everything else just sounds like an invalid excuse to me. Dumb.

But besides that whole issue, I’m pretty nervous to get sick again.. It’s hard to keep up with work and now that I have my own place I have no choice I need the money. At least I’ll be some what prepared. But on the other side of it, it’s hard when you know you’re going to get sick. The anticipation is there and it’s just digging at me. I feel like all of this is completely pointless because in as little as a few days I could be barely able to function. I definitely am going to take advantage of every day I feel good right now though. I think it’s hard for other people to understand when I say “I’m going to get sick”. One of the blogs I follow put it perfectly when she said we don’t get sick like you get sick, with a cold or with the flu for a week, it’s not like that. We get sick where day to day activities are almost impossible to complete for extended periods of time. We do a damn good job at hiding it too because Crohn’s is also known as an invisible disease. This phrase, “invisible disease” is evil. The kind of evil you never want to run into. You can be the most beautiful person on the outside, and physically suffering on the inside. We are often mistaken as hypochondriacs or “fakers”. Noone truly understands the disease because they can’t see how sick we are by just looking at us. We can throw a pretty outfit andImage a nice smile on and no one would ever know. So much is still out there we don’t know about this disease. There’s still so much more to solve.¬†

I’ve stocked up my fridge with powerade and homemade soup in order to get ready for when it’s time for my HB score to reach a 5. Yes, I’m excited for the trial but in the same breath I can say I’m not ready to get sick. I’m not ready to give up this energy and this good feeling I’ve been feeling. It’s just another day in the life of a Crohnie. I might be getting more and more “famous” in the IBD medical world due to my complicated case, but I’m still your average tweny-one year old girl just trying to carve her path in life and find someone along the way to hold her hand while she does it.

 

-xo Michelle

 

Talk About A Pain In the Ass

Pun completely intended in that title. But, me being a Crohn’s patient you’re probably thinking something different than what I’m really talking about (lol). I mean I guess I should have said a pain right above my butt but you get the jist of it. In previous posts I have talked about a herniated disk in the lowest part of my back. I’ve had a cortisone shot before and it wasn’t the most pleasant experience. Although, it was probably the coolest thing I’ve seen in a while. I mean the whole process of it.

I get called into the office, and of course as always, ma dukes is right by my side ūüôā I walked into what looked like an x-ray room with a big white table in the middle of the room and an x-ray machine with a monitor to the side of it. The nurse was very nice and quite comical when she asked me to lay on the table and then just completely whipped my pants off my butt. Yes, without even asking. Why do I always have such interesting experiences at the doctors, I don’t know. But anyways laying on the table, bare ass out the doctor came in. At first I was kind of confused as to why she whipped my yoga pants down considering I was getting a cortisone shot in my back… lol. But, it was the lowest part of my back and then soon realized they have to do the injection lower than the actual herniated disk. Thankfully, he wasn’t going right into my spine but rather in between the very top part of my butt crack, OUCH! Well, here we go. I’m face down on the table and he brings out the needle. Having being poked and protted so many times I have this weird¬†thing about¬†having to watch the needles go in whether its a shot, blood work, or an IV. I know, I’m weird. But being face down I couldn’t even see the needle which was my first problem. But,¬†I just looked forward and saw my mom’s face and let’s just say¬†that told me it all, which was my second problem. The doctor first gave me an injection of Novocain and boy did that kill. He waited a little while and gave me a second shot of it. Then set up the x-ray machine right next to my back. I felt pressure as I thought he was taking the Novocain needle out… Well, he was walking around the room and I was still feeling pressure. The conversation went like this…

Me: “Uhm, I still feel pressure, why.. is the needle still in me?”

Then, my mom with widened eyes and a shocked nervous smile just looked at me.

Doctor (with his thick Russian accent and as calm as can be): “Yeah, don’t move. It’s still in there.”

Me: “Mom, seriously is it? Can you see it?”

Mom: “Yeahhhh it’s still in there alright!”

Well I look over and there is a picture hanging on the wall in which I can see the reflection of the HUGE needle just sticking out of my back. Something you’d see in a horror film.

Sorry I’ve been blabbering on, the cool part is just about to happen. The doctor screws on the syringe with¬†cortisone in it and starts to push it in. I feel pressure but that’s about it. Then look onto the monitor screen and see the cortisone flowing up through my spine. It was the coolest thing I’ve ever seen. Even cooler than¬†flipping upside down after drinking barium and watching it flow through your digestive track Crohnies (ha!). If you’ve ever had an upper GI you’ll know what I’m talking about.

Well, the cortisone got¬†me to about 40% after¬†doing pretty much no physical activity besides several visits to PT. This wasn’t exactly what I had expected but my doctor did warn me it might not work that well. I then, as you all know, had a Crohn’s flare. And for me what that means is more steroids… A few weeks after my cortisone shot I had consulted with my doctor again to get another one, which would have been my last one I could have within¬†the year. But because of my flare I had an intense course of IV prednisone and to my surprise my doctor told me this should help my back long term even better than another cortisone shot. So, I cancelled my appointment. As my treatment went on with the IV steroids I saw a huge improvement in my back. I was even back to the gym! I know I’ve mentioned this before but I wanted to share the whole story and what perfect time other than when it’s acting up again! (sarcasm) I went to the gym earlier today and apparently worked out too hard because the back pain started up again. It started up so bad I had to take¬†a half of a pain pill. I am thinking about scheduling an appointment for another cortisone shot but that also means time off from work and the gym. We’ll see how I feel the next week or so before I jump¬†at that.

Also, an update on how I’m feeling. I was getting sick of this moon face from the prednisone so I figured I’d be a little bit of a rebel and weaned myself a little further than I was supposed to¬†down on the prednisone. Of course symptoms started coming back and I had to go back up to 20mg. They’ve stopped now that I’ve stuck to the doctors orders though. Lately I have been so exhausted. This feeling is all too familiar to us Crohnies. I haven’t felt it in a while though and maybe was taking too much advantage of it or I don’t know. But I’m going back to sleeping almost 16 hours a day and having a hard time functioning normally through the day. I have to push my way through it and chose my battles wisely. If I want to go to the gym at some point during the day I have to take an extra nap at some point too. Days I work, I haven’t been able to go to the gym. I have an appointment with my GI doctor in Boston tomorrow though so I’ll talk more about it with him but I don’t think there will be a solution unfortunately. Just going to stick to my green tea and extra sleep for now. Speaking of sleep, I have to get up at a decent time tomorrow so I’m going¬†to call it a night while this pain pill is still working and not being a pain in the ass!

Sweet dreams my fellow followers and Crohnies!

xo Michelle.

Who Said One Can’t Make A Difference?

One of my previous posts I wrote a letter to the President of Brigham and Women’s hospital about my stay. I had thought about it for a while and figured the first step in making a change or difference is letting them hear your voice. Basically, in short,¬†I told her how awful it was staying in that small, cramped, white room for four days. Obviously, no hospital stay is roses and rainbows but I’ve had my fair share and this was definitely the worst of them all. My transition into the adult world was to say the least, a hurricane of emotions. Well, my letter must have made some impression because I got a call last week from the Brigham! We have been playing telephone tag for a little while now so I haven’t been able to actually talk to them but I made an impression! It’s crazy to think I did that. They’re actually listening! I never labeled myself as one to be proactive about that kind of thing, but this was different and so I went for it. It was a simple letter. I made a difference!

This just makes me think, imagine if everyone who had experiences like this voiced their opinion and was proactive about it. How much better could we make the world. It sounds corny, but it’s true. People do listen to you, they do pay attention. All it takes is for you to speak up. As clich√© as it is but you miss 100% of the chances you don’t take. So go for it! Who cares what they say, if they don’t respond at least you tried. And even if you don’t get a response someone probably read or listened and now you have placed your thoughts in someone else’s mind to think about. All it takes is one person, one letter, one call. And more often than not, you will get a response.

They told me they’d take about a half hour of my time to ask me some questions. I don’t know what kind of questions they’re going to ask me when I talk to them, but I’m preparing myself for anything. I’m absolutely ecstatic they read my letter! I’ve been trying to come up with every possible question they might ask me.¬† I will write as soon as I here back from them and let you all know how my letter made a difference.

Next time you have a concern or certain experience that makes you think, bad or good, let them hear your voice! You never know whose listening!

Make-A-Difference