Thanksgiving was a few days ago. If this is any preview for the holidays, they are going to suck big time. But with family, and some wine, I think I can survive them. Plus I have this huge plan for the month of December that might make me feel better this year. I wanted to do big things last year and never followed through. This year, I just might make it happen.
Anyway, on Sunday I went to a Friendsgiving and we were instructed to write down 10 things that we were thankful for. We laughed, we cried, we toasted. But it was nice to sit with my closest friends and share what I am thankful for every day.
1. I'm thankful for my health. I'm on an ever present roller coaster ride but this year, the ride hasn't been horrible. And for the first time in years (knock on wood....) I have yet to end up in the hospital for any sorts of time except to visit my mother.
2. I'm thankful for patience. While I have little patience most of the time, I haven't acted out in my many thoughts of screaming at mean people or annoying coworkers.
3. Food, especially nachos.
4. Pictures to remind me of all the great memories.
5. And my family which includes the friends that have turned into family. I have leaned a great deal on them in the recent years of my life but nothing compares to this year. My mother and brother have been my rock. My work friends and Milford family have seen ugly sides of me and still loved me regardless. And every single person who has text messaged me, stopped by, called or reached out in some way, it means the world to me. I lost one of the most important family members in my life this year, and I am especially thankful that I had him in my life for 26 years.
I'm a firm believer in constantly telling those around you how thankful you are for them daily. It shouldn't just be a once in a year thing. I think we should always tell those we love how much we love them, including tons of hugs every day.
Showing posts with label health. Show all posts
Showing posts with label health. Show all posts
Saturday, November 30, 2013
Monday, November 11, 2013
A New Normal
I have been thinking a lot about this blog. About the title of it. About the description of it. And why I began this blog in the first place.
When I started this in 2010, I didn't want the repeated answers of family and friends questions about my condition. My blog was a way for me to share all my medical problems and vent with all the problems I faced at such a young age. For most of my blog, I was questioning what I was going through and why it took forever for me to be diagnosed with colitisis.
As the years went on, I embarked on my new normal. This included taking medications daily instead of being the "healthy" girl who only took medication during headaches. It was regular blood work and being on a first name basis with most of my doctors and the people in their office. This also included the highs and lows of having this disease that many people are not able to see.
Since May, I have another new normal that I have been trying to navigate. The new normal of not having my dad around. Most times I fail at the attempt of surviving the world without my dad. Sometimes I believe he is looking down on me and smiling at the woman that I am. But other times, I fear that I'm not being strong enough to make him proud. Silly, I know because my dad was proud of everything I do. But he was always my biggest cheerleader and I want to make him proud of the woman that I am and how hard I am trying to float in this new normal.
I'm sure this all doesn't make sense. Dad used to joke with me that most of my posts were just rambling about a whole lot of nothing. But I haven't changed how it has always been.
If you are willing, I'm still navigating through this New Normal of mine and I plan on documenting that journey a little better. I hope you will join me in this crazy ride and see the life I want to lead that will make my father happy.
When I started this in 2010, I didn't want the repeated answers of family and friends questions about my condition. My blog was a way for me to share all my medical problems and vent with all the problems I faced at such a young age. For most of my blog, I was questioning what I was going through and why it took forever for me to be diagnosed with colitisis.
As the years went on, I embarked on my new normal. This included taking medications daily instead of being the "healthy" girl who only took medication during headaches. It was regular blood work and being on a first name basis with most of my doctors and the people in their office. This also included the highs and lows of having this disease that many people are not able to see.Since May, I have another new normal that I have been trying to navigate. The new normal of not having my dad around. Most times I fail at the attempt of surviving the world without my dad. Sometimes I believe he is looking down on me and smiling at the woman that I am. But other times, I fear that I'm not being strong enough to make him proud. Silly, I know because my dad was proud of everything I do. But he was always my biggest cheerleader and I want to make him proud of the woman that I am and how hard I am trying to float in this new normal.
I'm sure this all doesn't make sense. Dad used to joke with me that most of my posts were just rambling about a whole lot of nothing. But I haven't changed how it has always been.
If you are willing, I'm still navigating through this New Normal of mine and I plan on documenting that journey a little better. I hope you will join me in this crazy ride and see the life I want to lead that will make my father happy.
Sunday, April 7, 2013
To put it simply, I've always been on the other side of the bed. I have always been the one reassuring everyone that I am okay, sometimes lying a little bit because you don't want your loved ones to worry even more about you. I've always been the one who has been bored out of her mind at home while everyone else is living their lives. I've been the one who sleeps to pass the time instead of watching countless reruns and the clock slowly pass.
Being on the other side sucks almost as much as being stuck in that bed recovering. I constantly worry about Mom. I worry that she's pushing herself too much or if she is comfortable. I worry that she'll start to do things that she shouldn't (cough Mom you need to stop doing that...cough). I worry that I'm not doing enough to help her out. And I worry that I'm not doing enough to help my dad.
My mom is strong and so is my dad. But it's still scary when I don't know how to help them. I know Mom is going to have her good days and her bad days. That's what the recovering from a major surgery calls for. There are times though, I wish I could take all of this away so they didn't have to deal with it.
I just want one year that my family doesn't have to worry about recovering from medical problems or hospital visits. I want one normal or boring year. Weird request right? But honestly, that sounds magical to me.
Being on the other side sucks almost as much as being stuck in that bed recovering. I constantly worry about Mom. I worry that she's pushing herself too much or if she is comfortable. I worry that she'll start to do things that she shouldn't (cough Mom you need to stop doing that...cough). I worry that I'm not doing enough to help her out. And I worry that I'm not doing enough to help my dad.
My mom is strong and so is my dad. But it's still scary when I don't know how to help them. I know Mom is going to have her good days and her bad days. That's what the recovering from a major surgery calls for. There are times though, I wish I could take all of this away so they didn't have to deal with it.
I just want one year that my family doesn't have to worry about recovering from medical problems or hospital visits. I want one normal or boring year. Weird request right? But honestly, that sounds magical to me.
Friday, February 22, 2013
I've made an important decision folks.
I'm going gluten free.
And I'm making a promise to try and be positive about this whole thing and not wallow on all the food that I will no longer be able to eat. Or the places I will be able to eat.
Actually, let's have a moment of silence about this sad turn of events.
Unlike most people who have been going gluten free or trying the whole "clean" eating thing, I'm not doing this to lose weight. Yes, it is a life style choice, but if I had a choice, I would continue to eat all the crappy food that I love.
Instead it's a life style choice to hopefully start a road to recovery. While my doctor may not say there is actual medical proof of a diet change working, I'm going to cross my fingers and toes that my inflammation will go down and I won't be so miserable all the time.
Which leads me to researching/going on Pinterest to find recipes for this new type of living I'm going to be doing.
Let the adventure begin.
I'm going gluten free.
And I'm making a promise to try and be positive about this whole thing and not wallow on all the food that I will no longer be able to eat. Or the places I will be able to eat.
Actually, let's have a moment of silence about this sad turn of events.
Unlike most people who have been going gluten free or trying the whole "clean" eating thing, I'm not doing this to lose weight. Yes, it is a life style choice, but if I had a choice, I would continue to eat all the crappy food that I love.
Instead it's a life style choice to hopefully start a road to recovery. While my doctor may not say there is actual medical proof of a diet change working, I'm going to cross my fingers and toes that my inflammation will go down and I won't be so miserable all the time.
Which leads me to researching/going on Pinterest to find recipes for this new type of living I'm going to be doing.
Let the adventure begin.
Sunday, February 17, 2013
2013, You've Been a Treat....
I'm going to let you in on a small secret.
I have had the pleasure of 2013 welcoming me in with a wonderful little flare up that has gotten worse instead of getting better. It all began mid-January. I started to not feel well and I got in touch with my doctor as soon as this started. We increased the steroids, and tried to come up with a plan because instead of getting better, the flare up was getting worse.
Flash forward to last week. Basically I was miserable. I would go into work, come home and try to eat the best that I could, and then go to sleep because I was completely exhausted. I have basically gone into hiding because I don't feel well.
I had another test done last Wednesday and was told that the inflammation hasn't gone down at all, which confused my doctor because I'm on a bunch of medications and shouldn't be so inflammed. So he upped the steroids and said I would be hearing from another doctor who will hopefully be able to figure out what's my problem. Mind you, I am piecing this conversation together because the good doctor thought it was a great idea to have this conversation when I was coming out of my drugged up state. Wonderful.
This past Friday, I talked to my doctor a little more. I guess my whole situation has him thinking about why I'm going through this and what the game plan should be. This is where it gets a bit scary and where I'm not such a strong little girl.
He said that I've gone through most of the medications that people who have colitis use. Either I can try some new medications that this other doctor will suggest, or I can try my shots every week now. I have wanted to try the shots every week now, but I need to actually get approved for the prescription through the insurance company. Wonderful. But he also mentioned surgery and removing my colon. That made me have a minor breakdown in the middle of the living room.
No surgery for this girl in the forseeable future.
Dad said that surgery will be my last option, but he has begun doing his own research on how to make me feel better. I think I'm going to start a different diet to hopefully curb these flare ups. I need to research some more about the diet before I make an official decision but I'm almost 99% sure I will be changing up my diet.
This is what has been happening to me these past few weeks. I am trying to be as stress free as I can because I know that's not good for my colitis. I have also been trying to avoid certain foods that will make me hurt. I've been having a good few days though, knock on wood.
I have had the pleasure of 2013 welcoming me in with a wonderful little flare up that has gotten worse instead of getting better. It all began mid-January. I started to not feel well and I got in touch with my doctor as soon as this started. We increased the steroids, and tried to come up with a plan because instead of getting better, the flare up was getting worse.
Flash forward to last week. Basically I was miserable. I would go into work, come home and try to eat the best that I could, and then go to sleep because I was completely exhausted. I have basically gone into hiding because I don't feel well.
I had another test done last Wednesday and was told that the inflammation hasn't gone down at all, which confused my doctor because I'm on a bunch of medications and shouldn't be so inflammed. So he upped the steroids and said I would be hearing from another doctor who will hopefully be able to figure out what's my problem. Mind you, I am piecing this conversation together because the good doctor thought it was a great idea to have this conversation when I was coming out of my drugged up state. Wonderful.
This past Friday, I talked to my doctor a little more. I guess my whole situation has him thinking about why I'm going through this and what the game plan should be. This is where it gets a bit scary and where I'm not such a strong little girl.
He said that I've gone through most of the medications that people who have colitis use. Either I can try some new medications that this other doctor will suggest, or I can try my shots every week now. I have wanted to try the shots every week now, but I need to actually get approved for the prescription through the insurance company. Wonderful. But he also mentioned surgery and removing my colon. That made me have a minor breakdown in the middle of the living room.
No surgery for this girl in the forseeable future.
Dad said that surgery will be my last option, but he has begun doing his own research on how to make me feel better. I think I'm going to start a different diet to hopefully curb these flare ups. I need to research some more about the diet before I make an official decision but I'm almost 99% sure I will be changing up my diet.
This is what has been happening to me these past few weeks. I am trying to be as stress free as I can because I know that's not good for my colitis. I have also been trying to avoid certain foods that will make me hurt. I've been having a good few days though, knock on wood.
Sunday, December 2, 2012
I hope everyone had an enjoyable holiday filled with smiles, laughter, friends, family, things we are thankful for and of course, tons of food.
As this holiday season approaches, I can't help remember that two years ago, everything was beginning. The end of my old old "normal and the transition of a new "normal" that I never thought I would get used to.
However, I slowly am getting used to it....
I have started my taper for the steroids on Black Friday. I did not want another miserable holiday and decided like Black Friday was a good a day as any to start decreasing some of my medication. After speaking with Dr. I, we determined we would try a faster taper then I'm used to, but it all depends on how my body becomes reacts to it. For now though, that means I'm going down 10 mg every Friday until I'm done. Which may mean I have the best Christmas present EVER.
Last week, I had to inject myself with two more of the Humira pens. And I was so proud of myself for not needing someone to hold my hand while I did the whole thing by myself in my room. Dad told me that if I ever think I can't fight, I need to remember that moment when I ran out to get high fives from Chris and Dad for doing the injections by myself. Dad could tell I was so proud of myself, and knew I would eventually need to remember that I'm stronger then I think. It's nice to have my family in my corner.
One more doctor's visit before the holidays and a few more blood tests I'm sure. It's funny though. In my new normal, I'm no longer terrified of needles or blood work. Instead I'm the girl asking questions on why they take two tubes of blood. And in my new normal? I kick ass in giving myself injections.
As this holiday season approaches, I can't help remember that two years ago, everything was beginning. The end of my old old "normal and the transition of a new "normal" that I never thought I would get used to.
However, I slowly am getting used to it....
I have started my taper for the steroids on Black Friday. I did not want another miserable holiday and decided like Black Friday was a good a day as any to start decreasing some of my medication. After speaking with Dr. I, we determined we would try a faster taper then I'm used to, but it all depends on how my body becomes reacts to it. For now though, that means I'm going down 10 mg every Friday until I'm done. Which may mean I have the best Christmas present EVER.
Last week, I had to inject myself with two more of the Humira pens. And I was so proud of myself for not needing someone to hold my hand while I did the whole thing by myself in my room. Dad told me that if I ever think I can't fight, I need to remember that moment when I ran out to get high fives from Chris and Dad for doing the injections by myself. Dad could tell I was so proud of myself, and knew I would eventually need to remember that I'm stronger then I think. It's nice to have my family in my corner.
One more doctor's visit before the holidays and a few more blood tests I'm sure. It's funny though. In my new normal, I'm no longer terrified of needles or blood work. Instead I'm the girl asking questions on why they take two tubes of blood. And in my new normal? I kick ass in giving myself injections.
Sunday, November 18, 2012
Doctors, Doctors, Doctors.
Tomorrow is another doctor's appointment where we find out more about the blood clot. This particular doctor always makes me smile when I see him because he walks in and gives me a kiss on the cheek. The first time I saw him he asked me why I was there, especially considering my age. The upside is this time I have never been truly knocked on my ass with Natasha and Boris. The downside is that I have some weird bruising on the leg that Natasha and Boris are located. When I asked my boss if that can be a side effect to the Warfarin, she said she didn't see it as one. But then when I showed her the veins, she laughed and told me my legs look like they are old people veins.
Before anyone takes offense to my boss laughing at me, I started making jokes with her before I pulled up my pant leg to show her my shins/calves. I have realized that if you start the joking, it takes the sting away from the reality that my veins really do look like an older woman's veins.
Sometime in the near future, I have an appointment with my rockstar stomach doctor. I'm hoping to start reducing the steroids. I have to start worrying about my bones when I'm on the steroids for any length of time, and I just want to stop worrying about things. So I'd like to get this show on the road and stop tappering the medication now.
I also have to make an appointment with a new doctor. It's the doctor who will hopefully tell me why I get these blood clots. Or they will tell me if there is something with my blood that makes it clot easier. But I'm hoping to get some answers when I go see that new doctor.
Before anyone takes offense to my boss laughing at me, I started making jokes with her before I pulled up my pant leg to show her my shins/calves. I have realized that if you start the joking, it takes the sting away from the reality that my veins really do look like an older woman's veins.
Sometime in the near future, I have an appointment with my rockstar stomach doctor. I'm hoping to start reducing the steroids. I have to start worrying about my bones when I'm on the steroids for any length of time, and I just want to stop worrying about things. So I'd like to get this show on the road and stop tappering the medication now.
I also have to make an appointment with a new doctor. It's the doctor who will hopefully tell me why I get these blood clots. Or they will tell me if there is something with my blood that makes it clot easier. But I'm hoping to get some answers when I go see that new doctor.
Tuesday, November 13, 2012
Another New Start....
Nothing better then giving a mass over view of my doctor's appointment to the general public via this blog.
No. There was absolutely no sarcasm in that statement. I promise.
Like I said earlier today, I was absolutely terrified to go into this doctor's appointment today. I knew I was learning how to inject myself with this new medication of mine, which doing anything new is scary. However, when I looked at the box, I realized I wouldn't be injecting just one "pen" into myself, but rather four. And the last time I got any sorts of injections/shots (i.e. the devil shots), I was in lots of pain after we injected them.
To say I was nervous was a huge understatement.
Well, the doctor who taught me how to do it was absolutely amazing. Seriously, she was super friendly, and answered every question I had thrown at her. She needed to verify some things about my current medication before we went over the proper way to inject those lovely pens. But she did answer everything, including the ever important "Will it hurt...."
Now about the actual injection. It's an interesting feeling to know you will be injecting yourself with medication, that sort of hurts, but not really. The pens are easy enough to actually do, just hold up some extra skin in my thigh area and hold down the pen for 10 seconds. Not too bad, the whole holding the skin part is more annoying then anything else. All I could think of for every pen (I did three on my own; the one she administered didn't hurt at all, but mine kinda had a little sting to it...) was that it was a suction cup whenever I hit the actual pump. Once again, really weird little action, but it's over within 10 seconds and then I just move on to the next pen.
There was a bit of blood, which of course scares me whenever I have any sort of blood, but I got four different band aids (not fun looking ones.....FAIL). I giggled going home thinking to myself how I would look completely broken if someone knew I had four different band aids all over my legs. On top of that really hot looking leg bruising or whatever.
Anyway, now I have to actually invest in a planner because I have to keep on top of when I'm injecting these pens. The next time I have is the beginning of December I believe where I will be using 2 pens, and then every two weeks I will be injecting myself with 1 pen. So only 10 seconds of uncomfortableness. YESSSSS!! So far there isn't really any side effects, but that happened last time too. I'm hoping that everything is going to go wonderfully with these injections. The only problem is I have to do some blood work, but luckily I can work this with my blood thinning blood work. The BIGGEST problem will probably be actually getting the blood outta my veins because that's been a huge fail any time I have gone to blood work.
But that's the update on my life from today. Tomorrow is a day to spend on the phone with mail order companies and billing offices. Wonderful day off huh? I lead pretty much the most exciting life in the world. And I wouldn't have it any other way....
No. There was absolutely no sarcasm in that statement. I promise.
Like I said earlier today, I was absolutely terrified to go into this doctor's appointment today. I knew I was learning how to inject myself with this new medication of mine, which doing anything new is scary. However, when I looked at the box, I realized I wouldn't be injecting just one "pen" into myself, but rather four. And the last time I got any sorts of injections/shots (i.e. the devil shots), I was in lots of pain after we injected them.
To say I was nervous was a huge understatement.
Well, the doctor who taught me how to do it was absolutely amazing. Seriously, she was super friendly, and answered every question I had thrown at her. She needed to verify some things about my current medication before we went over the proper way to inject those lovely pens. But she did answer everything, including the ever important "Will it hurt...."
Now about the actual injection. It's an interesting feeling to know you will be injecting yourself with medication, that sort of hurts, but not really. The pens are easy enough to actually do, just hold up some extra skin in my thigh area and hold down the pen for 10 seconds. Not too bad, the whole holding the skin part is more annoying then anything else. All I could think of for every pen (I did three on my own; the one she administered didn't hurt at all, but mine kinda had a little sting to it...) was that it was a suction cup whenever I hit the actual pump. Once again, really weird little action, but it's over within 10 seconds and then I just move on to the next pen.
There was a bit of blood, which of course scares me whenever I have any sort of blood, but I got four different band aids (not fun looking ones.....FAIL). I giggled going home thinking to myself how I would look completely broken if someone knew I had four different band aids all over my legs. On top of that really hot looking leg bruising or whatever.
Anyway, now I have to actually invest in a planner because I have to keep on top of when I'm injecting these pens. The next time I have is the beginning of December I believe where I will be using 2 pens, and then every two weeks I will be injecting myself with 1 pen. So only 10 seconds of uncomfortableness. YESSSSS!! So far there isn't really any side effects, but that happened last time too. I'm hoping that everything is going to go wonderfully with these injections. The only problem is I have to do some blood work, but luckily I can work this with my blood thinning blood work. The BIGGEST problem will probably be actually getting the blood outta my veins because that's been a huge fail any time I have gone to blood work.
But that's the update on my life from today. Tomorrow is a day to spend on the phone with mail order companies and billing offices. Wonderful day off huh? I lead pretty much the most exciting life in the world. And I wouldn't have it any other way....
Monday, November 5, 2012
It's Time to Begin.
I'm trying my best to get back to my ordinary life, but sometimes my stupid stomach and leg hold me back. This weekend I was able to go out with my friends, some of my favorite people in the world. Shannon and I got spent the whole weekend together along with Tom and his friends. I have known those guys for a few years now and they always put a huge smile on my face just because they are guys guys who enjoy hanging out with one another, drinking beers and talking about sports.
This weekend was exactly what I needed to get my mind off the fact that my stomach is taking longer to get better then I expected. Last time I ended up in the hospital with a flare, I was already back to eating regular food, especially with the amount of steroids I'm on. And now I just feel like my stomach is taking five years to bounce back and I don't have the patience to wait for it to be better.
That's not to say I haven't been able to enjoy my food. Unfortunately, sometimes, my stomach just hurts a lot after I eat. Whatever, I make sure to enjoy eating and just deal with whatever pain may come after the fact. I mean when one goes up to the casino, how does one simply ignore Margaritaville nachos. Spoiler alert: They don't.
Today is a stay in bed type of day because my leg has been hurting me a little bit. Natasha and Boris are mad at me from all the fun I have been having. The leg hasn't swollen at all, but the pain which had all but disappeared is there a bit right now. As I am typing, I have my legs elevating on a folded over pillow.
Story of my life.
And sometimes, I wouldn't have it any other way.
Friday, October 26, 2012
I'm Just the Same As I Was....
Confession time.
I'm terrified that this blood clot, and flare up happened to me again. I'm also terrified that I will get more blood clots whenever I have these stupid flare ups.
And being scared is not a way to live your life.
It's funny. I have put a huge smile on my face and cracked jokes about a name and those types of things. But the truth is, I don't want people to feel sorry for me. Ever see that look come across someone's face when something bad happens to you? Imagine every single person giving you that look. Most of the time, it's encouraging to know I have people that care about me that much to actually care. But sometimes, it's a kick in the stomach. Because I just want it all to go away.
I'm 25 years old and this is my second (or third if you want to count each one once) blood clot in two years. It's my third trip to the hospital with the whole stomach thing. And every time I'm growing tired of constantly trying to look on the bright side of this thing.
I have been told by countless people that I am strong, which I am so freaking thankful for those words of encouragement. Anytime I hear that, I get empowered to fight this thing a little longer. But I just want a few months, maybe even a full year, where I don't have to worry about what I'm eating, or going to the hospital, or stopping my daily life because my leg is in pain.
I have not been as concerned this go around and I have tried to keep positive the best I can. I mean I'm able to go to work. I'm able to go out with my friends. I'm able to eat some stuff.
But.....One year universe.....is that too much to ask? Please.
This is me feeling sorry for myself on a Friday morning. Like really, I'm excited the weekend is upon us, and that I have a wonderful Halloween costume in my POWER color. I mean how is a girl not supposed to feel beautiful in RED
I'm terrified that this blood clot, and flare up happened to me again. I'm also terrified that I will get more blood clots whenever I have these stupid flare ups.
And being scared is not a way to live your life.
It's funny. I have put a huge smile on my face and cracked jokes about a name and those types of things. But the truth is, I don't want people to feel sorry for me. Ever see that look come across someone's face when something bad happens to you? Imagine every single person giving you that look. Most of the time, it's encouraging to know I have people that care about me that much to actually care. But sometimes, it's a kick in the stomach. Because I just want it all to go away.
I'm 25 years old and this is my second (or third if you want to count each one once) blood clot in two years. It's my third trip to the hospital with the whole stomach thing. And every time I'm growing tired of constantly trying to look on the bright side of this thing.
I have been told by countless people that I am strong, which I am so freaking thankful for those words of encouragement. Anytime I hear that, I get empowered to fight this thing a little longer. But I just want a few months, maybe even a full year, where I don't have to worry about what I'm eating, or going to the hospital, or stopping my daily life because my leg is in pain.
I have not been as concerned this go around and I have tried to keep positive the best I can. I mean I'm able to go to work. I'm able to go out with my friends. I'm able to eat some stuff.
But.....One year universe.....is that too much to ask? Please.
This is me feeling sorry for myself on a Friday morning. Like really, I'm excited the weekend is upon us, and that I have a wonderful Halloween costume in my POWER color. I mean how is a girl not supposed to feel beautiful in RED
Wednesday, September 5, 2012
Seeing as I'm finally off of the steriods, I am finally seeing the side effects to the Remicade treatments.
Number one? I feel like I'm breaking out all over the place and that I look really silly with it. Plus, I'm tired all the time and can't stay awake if I ever lie down for any length of time. Which is not fun because I do not like being tired.
I'm hoping this goes away ASAP because I'm really over it.
Number one? I feel like I'm breaking out all over the place and that I look really silly with it. Plus, I'm tired all the time and can't stay awake if I ever lie down for any length of time. Which is not fun because I do not like being tired.
I'm hoping this goes away ASAP because I'm really over it.
Monday, August 27, 2012
Recently, Christopher has not stopped asking me questions about the whole colitis thing. You see, he has a new friend who has Crohn's and doesn't seem to know anyone who has the same thing. I guess I never realized how lucky I am to have friends who know what I am feeling when I go through a flare up.
But it's really nice to have Chris ask me questions about my health. Even if it's what medications are you on a Sunday at 10 oclock at night. When I didn't know what was going on with me, I was so upset with Chris for the fact that he never seemed interested in my well being. I knew he cared, because he always offered being a phone call away. But he always went off with his friends on adventures while I was stuck on my bed, depressed. Asking all the questions he has been asking, and seeing his fascination with knowing the answers through his new friends eyes is pretty amazing.
His interest in my condition makes me want to meet this new friend but more then that, I want to sit down and have an open discussion with my wonderful brother. Honestly, even a question about stupid medications couldn't wipe the smile off my face.
But it's really nice to have Chris ask me questions about my health. Even if it's what medications are you on a Sunday at 10 oclock at night. When I didn't know what was going on with me, I was so upset with Chris for the fact that he never seemed interested in my well being. I knew he cared, because he always offered being a phone call away. But he always went off with his friends on adventures while I was stuck on my bed, depressed. Asking all the questions he has been asking, and seeing his fascination with knowing the answers through his new friends eyes is pretty amazing.
His interest in my condition makes me want to meet this new friend but more then that, I want to sit down and have an open discussion with my wonderful brother. Honestly, even a question about stupid medications couldn't wipe the smile off my face.
Last year, when we lost Madison, I got another Madison in the form of a stuffed fox. A fox meant a lot to me at the time, and having the package waiting on my bed took the sting of losing one of my favorites from my life.
Now, we are losing Mandy, and I can not handle this loss as well. Mandy has always been the quiet of the two sisters. She barely barked while Madison was alive and now she barks a lot, especially when she gets excited about eating dinner. But while she has regained a youthfulness, she has been declining a lot these past few weeks. She can't make it up the stairs without being coaxed. Mom and Dad think she's blind in her eyes which I don't necessarily see. And it's heartbreaking to watch.
I don't have a stuffed animal to hold onto this time around and I'm rather nervous about Mandy. We will have such a quiet house when Mandy isn't around anymore.
I don't know why I'm writing about Mandy. I think I'm more sad then anything that she isn't feeling well and that she's lonely without Madison.
I just really don't like this growing up thing....
Now, we are losing Mandy, and I can not handle this loss as well. Mandy has always been the quiet of the two sisters. She barely barked while Madison was alive and now she barks a lot, especially when she gets excited about eating dinner. But while she has regained a youthfulness, she has been declining a lot these past few weeks. She can't make it up the stairs without being coaxed. Mom and Dad think she's blind in her eyes which I don't necessarily see. And it's heartbreaking to watch.
I don't have a stuffed animal to hold onto this time around and I'm rather nervous about Mandy. We will have such a quiet house when Mandy isn't around anymore.
I don't know why I'm writing about Mandy. I think I'm more sad then anything that she isn't feeling well and that she's lonely without Madison.
I just really don't like this growing up thing....
Tuesday, July 17, 2012
I'm Ready...
It's been a week since my first Remicade treatment and I feel no change. I was not looking for this to be the miracle drug. I was not looking for a drastic change, but I was hoping that I was feel a little different.
When I walked into the room last week, it was set up with a bunch of Lazy-boys and poles to hook up the IV's. There were already two people in there and the girl who runs the whole thing went over everything to expect with me. She was probably around my age, and really nice. And she hooked me up to the tubes and I sat there bored out of my mind for two and a half hours with Mom.
Every few minutes they would come over and change the speed of the medication coming in. At one point a doctor came in to hear my heart and stuff like that and asked if I was okay. He was an oddball but it's all good. I was hoping to actually get some face time with my doctor but he was in the other office. Maybe next week when I go he'll be there.
I don't know when I will get off my medications. I don't know if I'll ever get over the feeling of going to chemo when I go into that room. I don't know if I will ever want to go there alone or if I will want to drag people to go with me. And I honestly don't know how I will be able to pass the two hours with doing something productive.
But I gotta figure I'm not the first person to get this medication and it's going to make me better. So bring it on Remicade treatments. I'm ready for you.
When I walked into the room last week, it was set up with a bunch of Lazy-boys and poles to hook up the IV's. There were already two people in there and the girl who runs the whole thing went over everything to expect with me. She was probably around my age, and really nice. And she hooked me up to the tubes and I sat there bored out of my mind for two and a half hours with Mom.
Every few minutes they would come over and change the speed of the medication coming in. At one point a doctor came in to hear my heart and stuff like that and asked if I was okay. He was an oddball but it's all good. I was hoping to actually get some face time with my doctor but he was in the other office. Maybe next week when I go he'll be there.
I don't know when I will get off my medications. I don't know if I'll ever get over the feeling of going to chemo when I go into that room. I don't know if I will ever want to go there alone or if I will want to drag people to go with me. And I honestly don't know how I will be able to pass the two hours with doing something productive.
But I gotta figure I'm not the first person to get this medication and it's going to make me better. So bring it on Remicade treatments. I'm ready for you.
Monday, June 25, 2012
Walking For A Change
This weekend has inspired me guys, and the world better look out.
I went with the girls from work to Relay for Life up at Rentschler Field in honor of Macy's mom. It was my first Relay and I was excited to support a coworker who unfairly lost her mother to cancer at an early age. Macy isn't even 21 yet; she shouldn't have had to go through that. I had heard from Mary Lou how beautiful Macy's mom was and how much Macy looked like her. The picture at the camp ground just proved both of those statements to be absolute fact.
Macy was happy to have us there to support her. I don't know if she really expected us to show up but we did, and we did several laps while we were there. And it was humbling to say the least. To see all these people at Relay walking to find a cure, it was heart warming. Yes, many of these people lost loved ones to cancer, but there they were in their memories. And the survivors? They were the most amazing part of the whole day.
As I was completely each lap, I couldn't help look at all the lumanaries and get choked up by all the people who were lost because of this horrible disease. But how much we are making strives to fight cancer. I don't know why I didn't really think of Papa, but I was reminded of Christian a lot. I wish he was there and still able to conquer the world like he had been. But for every "Miss you Mom or Dad" I saw, I wanted to do something to make a difference. For my loved ones. For Macy who wrote she had amazing friends. But especially for all my loved ones who have been effected by this awful disease.
I've decided to look into helping a friend organize Relay closer to home. Ricky has been working with Relay since high school and when I was telling everyone I wanted to do something more with it at the beach, they said he needed help with it this year. And I really want to do something. I like the idea of someone's legacy continuing on with this wonderful cause of Relay for Life.
Hey world, I'm coming for you!
I went with the girls from work to Relay for Life up at Rentschler Field in honor of Macy's mom. It was my first Relay and I was excited to support a coworker who unfairly lost her mother to cancer at an early age. Macy isn't even 21 yet; she shouldn't have had to go through that. I had heard from Mary Lou how beautiful Macy's mom was and how much Macy looked like her. The picture at the camp ground just proved both of those statements to be absolute fact.
Macy was happy to have us there to support her. I don't know if she really expected us to show up but we did, and we did several laps while we were there. And it was humbling to say the least. To see all these people at Relay walking to find a cure, it was heart warming. Yes, many of these people lost loved ones to cancer, but there they were in their memories. And the survivors? They were the most amazing part of the whole day.
As I was completely each lap, I couldn't help look at all the lumanaries and get choked up by all the people who were lost because of this horrible disease. But how much we are making strives to fight cancer. I don't know why I didn't really think of Papa, but I was reminded of Christian a lot. I wish he was there and still able to conquer the world like he had been. But for every "Miss you Mom or Dad" I saw, I wanted to do something to make a difference. For my loved ones. For Macy who wrote she had amazing friends. But especially for all my loved ones who have been effected by this awful disease.
I've decided to look into helping a friend organize Relay closer to home. Ricky has been working with Relay since high school and when I was telling everyone I wanted to do something more with it at the beach, they said he needed help with it this year. And I really want to do something. I like the idea of someone's legacy continuing on with this wonderful cause of Relay for Life.
Hey world, I'm coming for you!
Tuesday, May 29, 2012
Blah Blah Blah
I've been in a funk all day thanks to the wonderful doctor's appointment earlier.
I'm sick of being sick to put it lightly. I know people who have the same thing as me and are on their own medications and if they stay on it, then they don't get flare ups. Then there is me. I take my medication religiously and I still get the flare ups. Then I have to go back on the steroids which is not good for my bones until we figure out what to do next.
Welp, my doctor laid out the options for me today and as I was sitting there listening to my options, I couldn't help but hold back all my tears. I just want to be normal again.
So basically the 6mp that I have been on since last summer isn't working. I have to be on a lower dose then normal because it messed with my liver and so at a lower dosing, and a flare up, he has determined that we need to have another course of action to deal with this colitisis. I get to choose from two things. Lucky me.
First option is to get an injection of methotraxate every week. Unfortunately, working in a pharmacy I am privy to things most people would not know, which means I asked the doctor if the tablets are the equivalent to the vials because the injection has been on a back order for as long as I can remember. He said it's not the same thing and he would want me to do the injection. Which means this option is not an option at this time because if I can't get the drug, then I can't inject it into me to feel better.
Option 2 is an IV treatment. I forget what the medication is called but basically I would go down to his office for a 3 to 4 hours IV treatment. To begin, I would need to get the treatment every 2 weeks but then I would be able to go every 8 weeks. With this treatment though, I have to go to the doctor's office, but it means that I won't have to take all my pills.
Now some people may say "Jen, it's a no brainer. Do the IV treatment if it means getting better. Plus not more pills." And while that is definitely a plus, I don't want to have to take a chunk of my day to just sit around while this IV drips into me. It makes me think I'm getting a cancer treatment. Which from my research on both of the drugs this afternoon, they are used to treat cancer first and foremost. I shouldn't be sitting here having a pity party on the fact I have to take some medication that treats cancer when I don't have it but I'm sorry, it's been a tough day to basically be told you have to do IV treatment.
When I get a real job, how do I explain having to take a half day or a day off every 8 weeks to sit in a room and get an IV drip. Is the IV going to have to only go in my hand because the veins in my elbow aren't strong enough to deal with any more pokes. Will I have to do this for the rest of my life? Will it actually work?
This doctor has not let me down yet, but I was hoping that this 6mp would have worked for me for the rest of my life. I don't want to do the IV or injection. I much rather take pills. If you had asked me in high school if I imagined myself crying about medications to treat a stomach problem, I would have said no. I just want to be better.....
I'm sick of being sick to put it lightly. I know people who have the same thing as me and are on their own medications and if they stay on it, then they don't get flare ups. Then there is me. I take my medication religiously and I still get the flare ups. Then I have to go back on the steroids which is not good for my bones until we figure out what to do next.
Welp, my doctor laid out the options for me today and as I was sitting there listening to my options, I couldn't help but hold back all my tears. I just want to be normal again.
So basically the 6mp that I have been on since last summer isn't working. I have to be on a lower dose then normal because it messed with my liver and so at a lower dosing, and a flare up, he has determined that we need to have another course of action to deal with this colitisis. I get to choose from two things. Lucky me.
First option is to get an injection of methotraxate every week. Unfortunately, working in a pharmacy I am privy to things most people would not know, which means I asked the doctor if the tablets are the equivalent to the vials because the injection has been on a back order for as long as I can remember. He said it's not the same thing and he would want me to do the injection. Which means this option is not an option at this time because if I can't get the drug, then I can't inject it into me to feel better.
Option 2 is an IV treatment. I forget what the medication is called but basically I would go down to his office for a 3 to 4 hours IV treatment. To begin, I would need to get the treatment every 2 weeks but then I would be able to go every 8 weeks. With this treatment though, I have to go to the doctor's office, but it means that I won't have to take all my pills.
Now some people may say "Jen, it's a no brainer. Do the IV treatment if it means getting better. Plus not more pills." And while that is definitely a plus, I don't want to have to take a chunk of my day to just sit around while this IV drips into me. It makes me think I'm getting a cancer treatment. Which from my research on both of the drugs this afternoon, they are used to treat cancer first and foremost. I shouldn't be sitting here having a pity party on the fact I have to take some medication that treats cancer when I don't have it but I'm sorry, it's been a tough day to basically be told you have to do IV treatment.
When I get a real job, how do I explain having to take a half day or a day off every 8 weeks to sit in a room and get an IV drip. Is the IV going to have to only go in my hand because the veins in my elbow aren't strong enough to deal with any more pokes. Will I have to do this for the rest of my life? Will it actually work?
This doctor has not let me down yet, but I was hoping that this 6mp would have worked for me for the rest of my life. I don't want to do the IV or injection. I much rather take pills. If you had asked me in high school if I imagined myself crying about medications to treat a stomach problem, I would have said no. I just want to be better.....
Tuesday, May 22, 2012
Time Flies....
Here's a fun fact for you all.
It has been a year since I returned home from my week long "vacation" at Yale New Haven.
I knew the anniversary was coming up, but I didn't know exact dates. I went back in this blog and saw I went home on the 21st. Which means that yesterday was the wonderful day that I gained my freedom back.
A lot has changed since I went into the hospital that early early Monday morning. For starters, I know exactly what I have and why my stomach had been acting up. I'm still the stubborn girl who got pissed off she had to stay at the hospital, but I'm trying not to close up when things don't go my way (my parents may disagree how well I'm doing on this one....). While I had all these hopes when I got out that I would be magically cured, I know now that a cure isn't possible and that I may have flair ups the rest of my life, but with rest and guidance from my doctor, I can get through it.
I learned other things. That I'm stronger then I was when I first went into the hospital, and even when I first got out. Also, I'm more open to what is going on with my health which was not the case before going in. I hid how bad it really was, because I had written it away that the problem would go away without doctor's help. Now, I tell my parents everything, even when I have random bruising on my legs (which is really annoying by the way but I'm hoping the summer will make it not as noticeable).
I can remember how weak I felt when I got out that Friday afternoon, but how extremely excited I was to be out, to have McDonalds, to go in and see people from work. I remember being excited to go to a Bluefish game, and to the Seas after the game, making jokes with Blair about the world ending and him using that as a pick up line. I remember how the world just felt so new because I had spent the week, hooked up to various machines, in a bed, not able to do anything on my own.
Sometimes I wish I could go back to that excitement of a brand new world and other times I realize I wouldn't want to. I enjoy my life. While there are tears, they have been mostly of joy as of late which a year ago they were mostly of frustration and sadness. And my world is exciting, just not in the getting out of the hospital and things are going back to normal kind of way....
It has been a year since I returned home from my week long "vacation" at Yale New Haven.
I knew the anniversary was coming up, but I didn't know exact dates. I went back in this blog and saw I went home on the 21st. Which means that yesterday was the wonderful day that I gained my freedom back.
A lot has changed since I went into the hospital that early early Monday morning. For starters, I know exactly what I have and why my stomach had been acting up. I'm still the stubborn girl who got pissed off she had to stay at the hospital, but I'm trying not to close up when things don't go my way (my parents may disagree how well I'm doing on this one....). While I had all these hopes when I got out that I would be magically cured, I know now that a cure isn't possible and that I may have flair ups the rest of my life, but with rest and guidance from my doctor, I can get through it.
I learned other things. That I'm stronger then I was when I first went into the hospital, and even when I first got out. Also, I'm more open to what is going on with my health which was not the case before going in. I hid how bad it really was, because I had written it away that the problem would go away without doctor's help. Now, I tell my parents everything, even when I have random bruising on my legs (which is really annoying by the way but I'm hoping the summer will make it not as noticeable).
I can remember how weak I felt when I got out that Friday afternoon, but how extremely excited I was to be out, to have McDonalds, to go in and see people from work. I remember being excited to go to a Bluefish game, and to the Seas after the game, making jokes with Blair about the world ending and him using that as a pick up line. I remember how the world just felt so new because I had spent the week, hooked up to various machines, in a bed, not able to do anything on my own.
Sometimes I wish I could go back to that excitement of a brand new world and other times I realize I wouldn't want to. I enjoy my life. While there are tears, they have been mostly of joy as of late which a year ago they were mostly of frustration and sadness. And my world is exciting, just not in the getting out of the hospital and things are going back to normal kind of way....
Wednesday, May 9, 2012
Cause You Never Had it So Good
I realized something as I was getting ready for work today....
It's almost a year since I was rushed to the hospital and got to spend a week with the lovely staff at Yale Hospital.
Now some may be wondering why I remember that wonderful anniversary, or even care. But it is an extremely important milestone in my life. I was not in a good place then, and I've grown leaps and bounds.
And I have to say, with the year anniversary approaching, I could not be happier to where I am, and look forward to all the growing up I still get to do.
It's almost a year since I was rushed to the hospital and got to spend a week with the lovely staff at Yale Hospital.
Now some may be wondering why I remember that wonderful anniversary, or even care. But it is an extremely important milestone in my life. I was not in a good place then, and I've grown leaps and bounds.
And I have to say, with the year anniversary approaching, I could not be happier to where I am, and look forward to all the growing up I still get to do.
Sunday, April 15, 2012
No Excuses, Play Like a Champ
I have spend most of this gorgeous weekend sleeping in my room. Fact.
It's not like I want to, but when you don't feel well, all you wanna do is sleep. Right now, my body feels like it's gotten hit by a truck and takes serious effort to stand and/or hold things. I hate being this weak, because I like standing on my own but jeez....I'm weak at this time.
I have had a few friends and my parents tell me I am strong. One told me I had to play like a champ. With people like that who believe in you? How can you want to cry all the time because you are not doing okay. I'm trying to figure that out. Part of me thinks the tears after hearing these things are because I'm afraid I am going to disappoint them when I am not that strong. But then I think they have stuck by my side through all of this so I'm assuming they will still be there.
Greg told me today how I looked like shit when I first walked into Nana's. I really wish it was a hang over like he said.
Boost seems to be sitting with me okay at the moment. I haven't been eating so I decided that it was a good idea to have some sort of supplement (ohhh heyyy body builder) and it's working at the moment. Knock on wood.
Work this week is going to be a challenge but I am going to persevere. It's what I have been doing for the past year and a half. Fighting and winning the battles.
It's not like I want to, but when you don't feel well, all you wanna do is sleep. Right now, my body feels like it's gotten hit by a truck and takes serious effort to stand and/or hold things. I hate being this weak, because I like standing on my own but jeez....I'm weak at this time.
I have had a few friends and my parents tell me I am strong. One told me I had to play like a champ. With people like that who believe in you? How can you want to cry all the time because you are not doing okay. I'm trying to figure that out. Part of me thinks the tears after hearing these things are because I'm afraid I am going to disappoint them when I am not that strong. But then I think they have stuck by my side through all of this so I'm assuming they will still be there.
Greg told me today how I looked like shit when I first walked into Nana's. I really wish it was a hang over like he said.
Boost seems to be sitting with me okay at the moment. I haven't been eating so I decided that it was a good idea to have some sort of supplement (ohhh heyyy body builder) and it's working at the moment. Knock on wood.
Work this week is going to be a challenge but I am going to persevere. It's what I have been doing for the past year and a half. Fighting and winning the battles.
Friday, April 13, 2012
A Quick Review on Life
Aside from the creepy two lined entry the other day, I haven't really shared all the amazing things that have been happening/fun adventures I have been on.
First and foremost, I have become a hiker. Yes, I go hiking at least once a week now and if I don't, I feel like I am miss out completely. My group of friends like to go on the weekends and sometimes I have to miss out (which makes me really really bummed) but then there are times that we all go and there is normally a lot of laughs and fun times. I have even gone on some of the harder trails and survived! And ran into a snake and didn't scream or run crying.
Next, I passed the national pharmacy test which basically means I'm getting a raise and promotion at work. The promotion has been a long time coming because I have basically been doing everything that the job entails for months now. But whatever, I passed a test I was terrified I was not going to pass. And I couldn't be more excited or proud.
Now for the part that most people probably come here to read about. I believe I'm having another flare up which has not been a walk in the park. Let me tell you, being miserable and wanting to cry all the time? Not a fun experience let me tell you. It all began on Saturday really when it truly did suck being at a picnic and having to run away every hour and half basically. That's the first breakdown during this flare up. I have been trying to muscle my way through it as strong as I can but this whole colitis thing makes me doubt that sometimes because it truly does kick you on your ass. It's hard trying to tell someone who doesn't have it what you experience. A pain in the stomach, pain in my back, wanting to cry all the time and not wanting to stand for long periods of time. It really is the most awful thing a person can imagine.
On top of all this, I haven't really been eating. I've become scared once again that whatever I eat will cause me pain so I don't eat large meals anymore. And when I do eat, I do become uncomfortable. So on top of not feeling well because of the colitis, I am weak because I'm not eating and that is never a good thing. I just had one of the first meals in a while, plus a milkshake. Lemme tell you it was heavenly. Here's to hoping no pain comes.
So that's life. I gotta take some tests in order to see if this is a flare up or if it's just an infection or stomach bug. Such an exciting little life I lead....
First and foremost, I have become a hiker. Yes, I go hiking at least once a week now and if I don't, I feel like I am miss out completely. My group of friends like to go on the weekends and sometimes I have to miss out (which makes me really really bummed) but then there are times that we all go and there is normally a lot of laughs and fun times. I have even gone on some of the harder trails and survived! And ran into a snake and didn't scream or run crying.
Next, I passed the national pharmacy test which basically means I'm getting a raise and promotion at work. The promotion has been a long time coming because I have basically been doing everything that the job entails for months now. But whatever, I passed a test I was terrified I was not going to pass. And I couldn't be more excited or proud.
Now for the part that most people probably come here to read about. I believe I'm having another flare up which has not been a walk in the park. Let me tell you, being miserable and wanting to cry all the time? Not a fun experience let me tell you. It all began on Saturday really when it truly did suck being at a picnic and having to run away every hour and half basically. That's the first breakdown during this flare up. I have been trying to muscle my way through it as strong as I can but this whole colitis thing makes me doubt that sometimes because it truly does kick you on your ass. It's hard trying to tell someone who doesn't have it what you experience. A pain in the stomach, pain in my back, wanting to cry all the time and not wanting to stand for long periods of time. It really is the most awful thing a person can imagine.
On top of all this, I haven't really been eating. I've become scared once again that whatever I eat will cause me pain so I don't eat large meals anymore. And when I do eat, I do become uncomfortable. So on top of not feeling well because of the colitis, I am weak because I'm not eating and that is never a good thing. I just had one of the first meals in a while, plus a milkshake. Lemme tell you it was heavenly. Here's to hoping no pain comes.
So that's life. I gotta take some tests in order to see if this is a flare up or if it's just an infection or stomach bug. Such an exciting little life I lead....
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