Last week I was told by my mother-in-law I look like a zombie. This was due to me walking and looking like one. It was a night of the usual severe pain and fatigue, where every move kills your body.
I, of course, laughed at this because of how much I hate zombies (traumatized as child at the babysitters from watching Night Of The Living Dead- yet this doesn't keep me from watching The Walking Dead). And yes, walking like this happens often.
This weekend I thought I'd give golf a try again. After the first hole I threw in the flag. I could feel it in my wrists and elbows. I decided to not have a repeat of last time. The feeling of how I felt afterwards was too fresh in my mind. When will I golf again? I'm guessing next year when the thoughts of how I feel afterward are long forgotten.
I also received my denial of disability this past week. Surprise surprise...I know it's going to be a long fight, especially after hearing stories from other BD'ers. I find the letter rather amusing. It pretty much states my condition is not severe enough to keep me from working. What I wouldn't give for the people who decided this to be hit with this disease. I wish they were forced to spend a week with me or in my body so they may understand. I have a meeting with a disability lawyer next week. I'll be spending my good time (time where I can semi-function) gathering info from websites and my own records I've kept to give to the lawyers.
I came across something rather interesting a couple days ago:
Wednesday, May 30, 2012
Wednesday, May 23, 2012
The Quest For A Normal Life...
The quest for a normal life...not something most people would give a second thought to. For me, I get a bug up my ass every so often to try to do something normal, to live a normal life...the life I use to have before this horrible disease took it away from me.
Last weekend it was golf. I haven't been golfing since I got sick- mainly because I can't walk the course and our golf cart wasn't working. Now the golf cart is working so Jason and I went golfing. It's a 9 course hole at our trailer. I could feel the pain after I was done with the first hole. I knew it was going to be hell the next day but the need to feel normal overwhelmed me. I was willing to suffer in order to do something normal. I know I am not alone in this. My Behcet's friends understand the need for this.
And yes, it was fun!
My wrists and elbows took it the worst. The three days following golfing felt like my wrists and elbows had been broken and put back together. Bruised on the inside and out. Even with pain meds it was terrible.
You'd think this would be enough to stop me from doing it again but it's not. Why? The answer is pretty simple. I long for these times. The days of doing normal things. Even if it's one normal thing a week. Even once a month. Either way, I'll take it. It's these normal things that stop me from going insane from sitting around day after day.
I know my life will never be normal again or there's a very slim chance of it. But then again, what is normal? Is there really such thing as normal? So I will say, I will try to have moments of what is normal to me even with this disease.
"It is almost impossible to remember how tragic a place this world is when one is playing golf. " ~Robert Lynd
Last weekend it was golf. I haven't been golfing since I got sick- mainly because I can't walk the course and our golf cart wasn't working. Now the golf cart is working so Jason and I went golfing. It's a 9 course hole at our trailer. I could feel the pain after I was done with the first hole. I knew it was going to be hell the next day but the need to feel normal overwhelmed me. I was willing to suffer in order to do something normal. I know I am not alone in this. My Behcet's friends understand the need for this.
And yes, it was fun!
My wrists and elbows took it the worst. The three days following golfing felt like my wrists and elbows had been broken and put back together. Bruised on the inside and out. Even with pain meds it was terrible.
You'd think this would be enough to stop me from doing it again but it's not. Why? The answer is pretty simple. I long for these times. The days of doing normal things. Even if it's one normal thing a week. Even once a month. Either way, I'll take it. It's these normal things that stop me from going insane from sitting around day after day.
I know my life will never be normal again or there's a very slim chance of it. But then again, what is normal? Is there really such thing as normal? So I will say, I will try to have moments of what is normal to me even with this disease.
"It is almost impossible to remember how tragic a place this world is when one is playing golf. " ~Robert Lynd
Wednesday, May 16, 2012
Changes In Weather...
How do the changes in weather affect Behcet's? Good question...
I've been MIA on here for a while for numerous reasons. One of them is severe swelling and pain in my poor little fingers. Another reason is, well, I don't have a good reason:)
Everyone says they are worse off when the weather changes. Changes from hot to cold, from cold to hot, with rain, with barometric pressure changes, full moon, etc...
I've tried for the past couple months to pay attention to this but some days it's impossible to track. Not sure if it's because my symptoms are all over the place or what. I've noticed the day before it rains I have more pain. Also when the changes from warm to cold. We had a couple days where it was warm and then dropped back down and it was pure hell. Something that is new to me this year is going from winter to summer. Looking back, my symptoms were so much less than they are now. *Sigh*
This past week it has been gorgeous out- 75 and sunny! Woot Woot! Unfortunately I've had more swelling and stiffness in my fingers and feet than I have ever had. It was so severe that not moving them made them more stiff but if I moved them they were painful, even with pain pills. It was a lose-lose situation.
It is better today or good enough to write on here. At first I thought it was because I planted a couple flowers but then the pain and stiffness continued so I knew that was not the cause. Thankfully:) I've already had to cut back on gardening majorly and if I had to give it up completely... I don't know what I'd do.
Something I am super happy about is it's summer (Or close to it) and the birds are out singing along with the other animals I love to watch- chipmunks, pheasants, geese, geese babies (they are so fluffy and cute I wanna pick them up and snuggle with them), ducks, etc. I hope you are enjoying it as much as I am. I've had a visitor called hyles lineata, or sphinx moth, lately and it's been interesting. He/She's been hitting up our hanging baskets and will let you get right next to it and take pics. Pics are below.
"In summer, the song sings itself."-William Carlos Williams
I've been MIA on here for a while for numerous reasons. One of them is severe swelling and pain in my poor little fingers. Another reason is, well, I don't have a good reason:)
Everyone says they are worse off when the weather changes. Changes from hot to cold, from cold to hot, with rain, with barometric pressure changes, full moon, etc...
I've tried for the past couple months to pay attention to this but some days it's impossible to track. Not sure if it's because my symptoms are all over the place or what. I've noticed the day before it rains I have more pain. Also when the changes from warm to cold. We had a couple days where it was warm and then dropped back down and it was pure hell. Something that is new to me this year is going from winter to summer. Looking back, my symptoms were so much less than they are now. *Sigh*
This past week it has been gorgeous out- 75 and sunny! Woot Woot! Unfortunately I've had more swelling and stiffness in my fingers and feet than I have ever had. It was so severe that not moving them made them more stiff but if I moved them they were painful, even with pain pills. It was a lose-lose situation.
It is better today or good enough to write on here. At first I thought it was because I planted a couple flowers but then the pain and stiffness continued so I knew that was not the cause. Thankfully:) I've already had to cut back on gardening majorly and if I had to give it up completely... I don't know what I'd do.
Something I am super happy about is it's summer (Or close to it) and the birds are out singing along with the other animals I love to watch- chipmunks, pheasants, geese, geese babies (they are so fluffy and cute I wanna pick them up and snuggle with them), ducks, etc. I hope you are enjoying it as much as I am. I've had a visitor called hyles lineata, or sphinx moth, lately and it's been interesting. He/She's been hitting up our hanging baskets and will let you get right next to it and take pics. Pics are below.
"In summer, the song sings itself."-William Carlos Williams
Thursday, May 3, 2012
Life's Not Fair...
Life's not fair. We all know it. You know it more at certain times in your life than others. What if your life was not fair every single day, with every single decision you make?
For those of us with Behcet's, this is reality. If you think I'm whining about it, please read on.
This is about the choices I have to make and not that I have been given this disease.
Every decision I make causes my body to have a reaction. These reactions are not always good. Wish I could say they were. Even something as simple as getting ready for work, going to the store, or even cleaning the toilet causes me either pain, fatigue, some other symptom, or a combo of all. I can't think of a time recently that I was out and about doing something normal, like grocery shopping, where it didn't send my body into a flare up the next day. Or make me feel like my body has been bruised and beaten the next day. Sound fun? It's not.
I had to make a decision a couple days ago about my gramma. It was my gramma's birthday (yes this is how I spell and say grandma- we all have our own way, so shut it:). Her 82nd birthday to be exact. I had to decide to go or stay home. I felt like crap. Severe body aches and fatigue. Already feeling like this, it was most likely I would miss work the following day. Not 100% guarantee I would miss work but a great chance. The decision for me at this point to go to my gramma's was simple. Why?
My reasons were 1) I missed Christmas Eve last year with her due to being sick. 2) How many more birthdays is my gramma is going to have?
Normal people do not have to make decisions like those of us living with chronic illness. Can you imagine deciding picking between your gramma's birthday (which may be her last) or work the next day? What would you pick? Maybe my ethics are different from others. Maybe I'm sick of missing out on family things due to this disease. Maybe if you had to chose you'd chose different. Looking back, I wouldn't change my decision.
Whatever the risks with the decisions we make, those of us with Behcet's sometimes take them knowing we will miss something the next day just to say we had a normal day in our lives every once in a great while.
Here's a thought for you to ponder. If you could choose one thing a day that you could do, what would it be? If you had a choice between cooking dinner or playing with your children for 30 minutes, what would it be? How about vacuuming the house or making dinner for your family? How about going to work or cooking for your family? Fishing or cleaning one thing in the house? Going to your family get together or missing work the next day? Remember you can't do both most days and whatever you do will affect how you feel tomorrow. So what would your one thing for the day be?
"The difficulty of life is in the choice." George Moore
Note: The majority of this post was written around March 18th back when I was still working, but because I've been such a procrastinator lately with my posts...well better late than never:)
For those of us with Behcet's, this is reality. If you think I'm whining about it, please read on.
This is about the choices I have to make and not that I have been given this disease.
Every decision I make causes my body to have a reaction. These reactions are not always good. Wish I could say they were. Even something as simple as getting ready for work, going to the store, or even cleaning the toilet causes me either pain, fatigue, some other symptom, or a combo of all. I can't think of a time recently that I was out and about doing something normal, like grocery shopping, where it didn't send my body into a flare up the next day. Or make me feel like my body has been bruised and beaten the next day. Sound fun? It's not.
I had to make a decision a couple days ago about my gramma. It was my gramma's birthday (yes this is how I spell and say grandma- we all have our own way, so shut it:). Her 82nd birthday to be exact. I had to decide to go or stay home. I felt like crap. Severe body aches and fatigue. Already feeling like this, it was most likely I would miss work the following day. Not 100% guarantee I would miss work but a great chance. The decision for me at this point to go to my gramma's was simple. Why?
My reasons were 1) I missed Christmas Eve last year with her due to being sick. 2) How many more birthdays is my gramma is going to have?
Normal people do not have to make decisions like those of us living with chronic illness. Can you imagine deciding picking between your gramma's birthday (which may be her last) or work the next day? What would you pick? Maybe my ethics are different from others. Maybe I'm sick of missing out on family things due to this disease. Maybe if you had to chose you'd chose different. Looking back, I wouldn't change my decision.
Whatever the risks with the decisions we make, those of us with Behcet's sometimes take them knowing we will miss something the next day just to say we had a normal day in our lives every once in a great while.
Here's a thought for you to ponder. If you could choose one thing a day that you could do, what would it be? If you had a choice between cooking dinner or playing with your children for 30 minutes, what would it be? How about vacuuming the house or making dinner for your family? How about going to work or cooking for your family? Fishing or cleaning one thing in the house? Going to your family get together or missing work the next day? Remember you can't do both most days and whatever you do will affect how you feel tomorrow. So what would your one thing for the day be?
"The difficulty of life is in the choice." George Moore
Note: The majority of this post was written around March 18th back when I was still working, but because I've been such a procrastinator lately with my posts...well better late than never:)
Subscribe to:
Posts (Atom)