So, tomorrow is the day of my upper endoscopy and colonoscopy.
I have not eaten since last night, and could seriously kill someone for a cheese burger. No joke.
The prep, although I am having a bit of cramping, hasn't killed me yet. It's the starvation that is kicking my ass. I typically eat 3000 calories per day to maintain my weight, which doesn't even work some days. Some days, I still lose a couple pounds. A day with no calories....we'll see how this goes.
My weight this morning was 112.4 with my clothes on. And I plan to weigh myself again right before we leave at 9am.
I feel like ass. My stomach is killing me. And all I want is some freakin' food!
I'm done. Good night.
Thursday, January 27, 2011
Wednesday, January 19, 2011
On a more positive note!
I do have to add, that I have the most supportive family. My parents are amazing and would do anything for me. I have the most loving husband who does whatever he can (in his own way, hehe). The best friend (wifey) that I could ask for.....Even my boss, even though she's my boss, she still feel's for me, worries about me, does research for me and cares about my well being.
The people who love me and support me and stand by me no matter what, they are who matter. It doesn't matter if it's a good day, or a bad one. They always love me for me and don't even think about my disease.
They are amazing & I love them more than anything. <3
The people who love me and support me and stand by me no matter what, they are who matter. It doesn't matter if it's a good day, or a bad one. They always love me for me and don't even think about my disease.
They are amazing & I love them more than anything. <3
Hmmmm
I typically try to be a positive person. Especially when it comes to people. I have always been the butt of jokes, the one people talk about. But, I don't usually indulge in the same behavior. I know how much it hurts, so therefore, I don't do it to anyone.
That being said. Will people please grow up? Apparently, people are constant teenagers who have nothing better to do than to talk about other people. To kick people when they are down.
How came someone such as myself, who does so much for people, be treated the way that I am?
It boggles my freakin' mind. Karma's a bitch. And, unfortunately, I must have had a little bit out there, because I can't seem to get away from these people who want nothing more than to verbally bash me.
I am sick. I have a disease. This is not a joke. It's not something I made up. It's real. Whether you think I am exaggerating or not, it doesn't matter. You should not have an opinion about something that you know nothing about. To be honest, I think I, (what's the opposite of exaggerate?) (undermine?), I guess, undermine what I go through on a daily basis. I've said it before, imagine being hit by a truck. And all my fellow peers with Behcet's will agree. That is what it feels like.
I talked with one of the cardiologist's at work today. He had heard I was diagnosed with Behcet's so he asked me what treatment I was doing. When I replied that I hadn't started treatments yet, his response was "And you're working?!" He was surprised that I would be working, with Behcet's, without any treatment except ibuprofen. So HA! People who know about this disease, know how bad it really is. And until you live in my body. Shut the hell up. Seriously.
That being said. Will people please grow up? Apparently, people are constant teenagers who have nothing better to do than to talk about other people. To kick people when they are down.
How came someone such as myself, who does so much for people, be treated the way that I am?
It boggles my freakin' mind. Karma's a bitch. And, unfortunately, I must have had a little bit out there, because I can't seem to get away from these people who want nothing more than to verbally bash me.
I am sick. I have a disease. This is not a joke. It's not something I made up. It's real. Whether you think I am exaggerating or not, it doesn't matter. You should not have an opinion about something that you know nothing about. To be honest, I think I, (what's the opposite of exaggerate?) (undermine?), I guess, undermine what I go through on a daily basis. I've said it before, imagine being hit by a truck. And all my fellow peers with Behcet's will agree. That is what it feels like.
I talked with one of the cardiologist's at work today. He had heard I was diagnosed with Behcet's so he asked me what treatment I was doing. When I replied that I hadn't started treatments yet, his response was "And you're working?!" He was surprised that I would be working, with Behcet's, without any treatment except ibuprofen. So HA! People who know about this disease, know how bad it really is. And until you live in my body. Shut the hell up. Seriously.
Tuesday, January 18, 2011
Seriously?!
I just have to say, why is it that people think that autoimmune disorders are temporary?
People, seeing me in pain, will say, "I didn't realize anything was wrong today?"
Seriously? Yes, some days are worse than others. But it's not something that comes an goes. At least, not for me.
Some days, I'm a useless lump. Some days I can function. That's about it. Plain an simple.
If you don't believe me, do some research. Look at my documentation from my doctor's office. Look at my test results. Obviously, I'm not making this up. It's not fun for me. I don't like being this way. I don't like feeling like shit all the time. But I do. It's part of me now, and I have learned to embrace it and learn from it. It doesn't make me a bad person, it just means I have limitations and I have to take much better care of myself.
That's my vent for the night.
Love me or hate me. This is who I am. I am more than a diagnosis.
People, seeing me in pain, will say, "I didn't realize anything was wrong today?"
Seriously? Yes, some days are worse than others. But it's not something that comes an goes. At least, not for me.
Some days, I'm a useless lump. Some days I can function. That's about it. Plain an simple.
If you don't believe me, do some research. Look at my documentation from my doctor's office. Look at my test results. Obviously, I'm not making this up. It's not fun for me. I don't like being this way. I don't like feeling like shit all the time. But I do. It's part of me now, and I have learned to embrace it and learn from it. It doesn't make me a bad person, it just means I have limitations and I have to take much better care of myself.
That's my vent for the night.
Love me or hate me. This is who I am. I am more than a diagnosis.
Friday, January 14, 2011
Something to think about....
Today was a better day. Minimal issues. Knee pain was really the only 'big deal'. It's funny, the whole 'pain tolerance thing'.
When you go to the hospital, or your doctor's office, they ask you your pain on a scale of 1 - 10. 10 being extreme pain. So, I have to ask, how should you define it? See, on a normal day, I rate my pain a 7. Tolerable, but almost over the edge of too much. But most people, being in my body, would probably say 10. And I don't think I am exaggerating.
I can get large tattoos and not flinch. I can fall down a set of stairs and only pick myself up and recollect myself for a moment. For most people, that would be too much. I went through labor, with no drugs, and honestly, would do it again if it meant I didn't have another 3 year old some day.
Pain has never been a factor for me. Until it became a daily occurrence. I can function, I can make it through the day in a level of pain that would probably make most not even get out of bed. If it gets to the point where I am useless, it's pretty bad.
Lately, it's been that bad. It's gotten to the point where I can't keep going. I describe it as 'flu-like' symptoms to people to let them understand. But that it putting it modestly. It's more like being hit by a truck. I don't care what your pain tolerance is, if you get it by a truck, you're taking a few days off.
That being said, I hate pain scales. I don't like people trying to compare my daily suffering to the time they broke their arm. That pain, goes away. This pain, doesn't. And unfortunately, it may not. Ever.
Cleaning, painting, picking up my daughter, are all becoming work. They aren't simple, mundane tasks anymore. They take a lot out of me.
I hope all you healthy people out there start noticing the little things. Don't take those simple tasks for granted. You don't know, when you wont be able to do them any more.
Like Jimmy Buffett once said "Be kind to your knee's you'll miss them when their gone..." Ha. Ain't that the truth!?
When you go to the hospital, or your doctor's office, they ask you your pain on a scale of 1 - 10. 10 being extreme pain. So, I have to ask, how should you define it? See, on a normal day, I rate my pain a 7. Tolerable, but almost over the edge of too much. But most people, being in my body, would probably say 10. And I don't think I am exaggerating.
I can get large tattoos and not flinch. I can fall down a set of stairs and only pick myself up and recollect myself for a moment. For most people, that would be too much. I went through labor, with no drugs, and honestly, would do it again if it meant I didn't have another 3 year old some day.
Pain has never been a factor for me. Until it became a daily occurrence. I can function, I can make it through the day in a level of pain that would probably make most not even get out of bed. If it gets to the point where I am useless, it's pretty bad.
Lately, it's been that bad. It's gotten to the point where I can't keep going. I describe it as 'flu-like' symptoms to people to let them understand. But that it putting it modestly. It's more like being hit by a truck. I don't care what your pain tolerance is, if you get it by a truck, you're taking a few days off.
That being said, I hate pain scales. I don't like people trying to compare my daily suffering to the time they broke their arm. That pain, goes away. This pain, doesn't. And unfortunately, it may not. Ever.
Cleaning, painting, picking up my daughter, are all becoming work. They aren't simple, mundane tasks anymore. They take a lot out of me.
I hope all you healthy people out there start noticing the little things. Don't take those simple tasks for granted. You don't know, when you wont be able to do them any more.
Like Jimmy Buffett once said "Be kind to your knee's you'll miss them when their gone..." Ha. Ain't that the truth!?
Thursday, January 13, 2011
Another day...
Yet another bad day. A day where the pain just takes over. My whole being hurts. Everyone says "Stay positive." They, obviously, have never endured anything like this.
There are good days & bad days. And some days there are periods of both. Not knowing, for me, is the hardest.
I'm a planner. That's what I do. I plan ahead months in advance. I make lists, every day. I calculate everything. I know what someone is thinking before they start to say it. I hate being spontaneous and I hate surprises. I, I guess, am a creature of habit. Now...When you find out you have a disease/disorder/syndrome....but....no one quite knows what it is, you can see my dilemma. I can't control this. I can't even plan to wake up for work in the morning. I can't even have a daily schedule anymore. Some days I am up all night, therefore, I sleep all day. Aside from the pain I am in, the situation itself is driving me insane! And on top of it all, the top emotion I get from people is pity. I am the caregiver. I am the one who is supposed to help others. I keep the balance in my own world. Now, I can't do any of that. It's me who needs the help. Me who is scared to tell my loved ones that it's 'another bad day' for fear that they will judge me, pity me....Something. This whole disease business has made me crazy. Irrational at times. I have always been a positive person, but she's been slipping away, rather quickly. And I have to make sure she doesn't disappear all together.
Another bad day. Another whirlwind of emotions.
If any one is out there reading this. I'm glad you care. And I hope my severe negativity, is counter balance by my quick wit. Ha. I'm funnier in person.
Without my humor, i'd be a miserable human being. Seriously.
There are good days & bad days. And some days there are periods of both. Not knowing, for me, is the hardest.
I'm a planner. That's what I do. I plan ahead months in advance. I make lists, every day. I calculate everything. I know what someone is thinking before they start to say it. I hate being spontaneous and I hate surprises. I, I guess, am a creature of habit. Now...When you find out you have a disease/disorder/syndrome....but....no one quite knows what it is, you can see my dilemma. I can't control this. I can't even plan to wake up for work in the morning. I can't even have a daily schedule anymore. Some days I am up all night, therefore, I sleep all day. Aside from the pain I am in, the situation itself is driving me insane! And on top of it all, the top emotion I get from people is pity. I am the caregiver. I am the one who is supposed to help others. I keep the balance in my own world. Now, I can't do any of that. It's me who needs the help. Me who is scared to tell my loved ones that it's 'another bad day' for fear that they will judge me, pity me....Something. This whole disease business has made me crazy. Irrational at times. I have always been a positive person, but she's been slipping away, rather quickly. And I have to make sure she doesn't disappear all together.
Another bad day. Another whirlwind of emotions.
If any one is out there reading this. I'm glad you care. And I hope my severe negativity, is counter balance by my quick wit. Ha. I'm funnier in person.
Without my humor, i'd be a miserable human being. Seriously.
Wednesday, January 12, 2011
A simple introduction...although, there's nothing simple about me
Who knows who will read this...but, I thought I'd put my thoughts on the net for the world to embrace.
I am 26 years old. A wife, A mother, A daughter. A friend. And I am struggling with some kind of autoimmune, multi systemic, possibly, connective tissue disorder.
I have been dealing with severe pain, mostly in my knees and hips. Oral & genital lesions. Eye pain/blurred vision. Migraines. Sleeplessness & fatigue. Chronic swollen lymph nodes and bruising. As well as extreme weight fluctuations over the last 3.5 years.
I have had multiple labs tests, x-rays, CT scans, EKG's, MRI's and soon, a colonoscopy & upper endoscopy. Yipee Skippee.
So far, we have come to the conclusion of 'Behcet's disease.' But recent lab results, may change that to Lupus. I wont know until all of my testing is complete.
This blog is meant to inform people. To show people what it is like to live day to day in pain and not know what the hell is going on with your body.
I have spent the last 3.5 years being called a hypochondriac . Even with abnormal labs, a lymph node biopsy showing inflammation and many more clinical findings. I miss on average a day of work per week, which is putting a damper on my employ-ability.
I know there are thousands of people out there, just like me. Living every day wondering if it will be better or worse than the day before. Worried about what other people think, if they believe you are as sick as you feel. Researching the internet day after day trying to find answers.
I will not post every day. But, when I am having a profound moment, or some new revelation happens, I plan to let who ever cares, know. I am hoping with my oddly adorable sense of humor and the support of my family, I can get people interested in my life.
Who knows, maybe this will start a whole new movement of people who have unknown disorders.
I am 26 years old. A wife, A mother, A daughter. A friend. And I am struggling with some kind of autoimmune, multi systemic, possibly, connective tissue disorder.
I have been dealing with severe pain, mostly in my knees and hips. Oral & genital lesions. Eye pain/blurred vision. Migraines. Sleeplessness & fatigue. Chronic swollen lymph nodes and bruising. As well as extreme weight fluctuations over the last 3.5 years.
I have had multiple labs tests, x-rays, CT scans, EKG's, MRI's and soon, a colonoscopy & upper endoscopy. Yipee Skippee.
So far, we have come to the conclusion of 'Behcet's disease.' But recent lab results, may change that to Lupus. I wont know until all of my testing is complete.
This blog is meant to inform people. To show people what it is like to live day to day in pain and not know what the hell is going on with your body.
I have spent the last 3.5 years being called a hypochondriac . Even with abnormal labs, a lymph node biopsy showing inflammation and many more clinical findings. I miss on average a day of work per week, which is putting a damper on my employ-ability.
I know there are thousands of people out there, just like me. Living every day wondering if it will be better or worse than the day before. Worried about what other people think, if they believe you are as sick as you feel. Researching the internet day after day trying to find answers.
I will not post every day. But, when I am having a profound moment, or some new revelation happens, I plan to let who ever cares, know. I am hoping with my oddly adorable sense of humor and the support of my family, I can get people interested in my life.
Who knows, maybe this will start a whole new movement of people who have unknown disorders.
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