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:)
Monday, April 30, 2012
The Most Difficult Decision Yet...
What is the most difficult decision you've had to make in your life? Is it marriage? Divorce? Children? Something job related? A health issue? Maybe surgery? Buying a house? Letting go of your house? Deciding to not let someone be in your life anymore? Dealing with the death of a loved one?
For me it was the decision to go on full LOA. Since graduating from nursing school, work has been a huge part of my life. I take pride in my nursing career. I worked hard to get where I'm at. I had plans to go on and be a nurse practitioner in family practice. I love doing what I do. How many people can say that?
My symptoms have been worsening over the past couple months. I wish I could say I didn't see this coming, but I knew it was. At least some where deep down in me I knew it was coming. I did try to deny it for a long time. My call-ins had become more frequent and it's been impossible for me to get out of bed most days. Then there's the memory problems, headaches, and lovely new symptoms. I remember the last time I was at work, I was so miserable pain wise, I had a bad attitude. I never have a bad attitude at work. Between not being at work for almost two weeks and feeling like over all poo, this is when I really started to look at the possibility of full LOA. Another Behcet's reality had struck me.
The guilt of calling in and the stress of trying to make it to work was horrible. Now that I am on leave, it is less stressful but unfortunately hasn't changed my symptoms. I've had new ones pop up and old ones worsen. Damn magical grab bag of Behcet's. It's never ending some days.
One of the hardest part of this for me is the changing from a go-go-go type person to laying around the house. I've slowly gotten use to it since being sick but now my social interaction is gone. Or at least decreased. I still have my family on a daily basis. Thank god for social media and the support I get from my BD girls on face book. Some of you might say find a hobby. Well it's not that easy. When you feel like shit most days all you can do is lay around. If I was feeling well enough to have a hobby that required me to do something other than lay in bed, I'd be working. Netflix has become my hobby. Thankfully I'm a movie kind of girl. If you weren't a movie person before getting Behcet's, you would become one after, trust me. I have my writing but I'm not always well enough to do that either.
Another thing that is seriously messed up about this whole situation and trying for disability is money. How the hell do they expect people to live? I have long term disability but it takes 90 days to kick in. So basically for me there's a 3 month waiting period without money. I won't even get in to how long I think it's gonna take me to get actual disability from the state- I've heard anywhere from 3 years to 7 years it takes people with Behcet's, sometimes more. Now what about others who don't have long term disability through their work? I'm getting pissed off just thinking about what people have to go through until they get disability. No wonder people end up on the streets or living with family. I hope and wish for a faster way for others to get disability who have to deal with this. Remember stress only makes our symptoms worse. Dealing with money problems is stressful for anyone but multiply it by 100 with a disease like Behcet's.
Oh yeah, let's not forget about health insurance. After 3 months my health insurance is gone unless I pay cobra. We all know how ridiculous cobra costs. Then from what I remember before I can get Minnesota medical assistance, I have to be without health insurance for 3-4 months. So basically I'm fucked if I get sick. I say that because I will have to pay out of pocket. Do you have any idea what it's like to pay out of pocket for a doctor's visit? And we have idiots here who think we don't need health insurance for everyone. Yes we do folks! Don't get me wrong I don't want the government in our lives anymore than you, but some things we do need. [Note: I'm not endorsing any political party. I would like to keep politics out of my blog:)] Try getting a disease like this and live without health insurance. About 10 years ago I was nursing school and was at a job where I didn't qualify for health insurance. I developed an urinary tract infection-severe enough I'm lucky I didn't end up in the hospital. Do you have any idea how much it cost for those antibiotics without insurance? $125. How much for the office visit and labs? I don't recall but I can tell you that office visits right now run around $300 on average minus the labs. Now how can someone afford this when they are not working, waiting for disability, and have no cash coming in?
As you read this, I hope you understand that those of us with Behcet's do want to work but the disease can make it impossible for this to happen. My only words of wisdom for tonight are to be happy with what you have- Job, health insurance, your health, house, etc., because you never know when something like this will hit you and you'll be left without this stuff.
"We tend to forget that happiness doesn't come as a result of getting something we don't have, but rather of recognizing and appreciating what we do have." Frederick Keonig
Note: This post was started way back on 4/4/12. I'm a bit behind with my posting on account of feeling like poo and being engrossed in The Hunger Games trilogy:)
For me it was the decision to go on full LOA. Since graduating from nursing school, work has been a huge part of my life. I take pride in my nursing career. I worked hard to get where I'm at. I had plans to go on and be a nurse practitioner in family practice. I love doing what I do. How many people can say that?
My symptoms have been worsening over the past couple months. I wish I could say I didn't see this coming, but I knew it was. At least some where deep down in me I knew it was coming. I did try to deny it for a long time. My call-ins had become more frequent and it's been impossible for me to get out of bed most days. Then there's the memory problems, headaches, and lovely new symptoms. I remember the last time I was at work, I was so miserable pain wise, I had a bad attitude. I never have a bad attitude at work. Between not being at work for almost two weeks and feeling like over all poo, this is when I really started to look at the possibility of full LOA. Another Behcet's reality had struck me.
The guilt of calling in and the stress of trying to make it to work was horrible. Now that I am on leave, it is less stressful but unfortunately hasn't changed my symptoms. I've had new ones pop up and old ones worsen. Damn magical grab bag of Behcet's. It's never ending some days.
One of the hardest part of this for me is the changing from a go-go-go type person to laying around the house. I've slowly gotten use to it since being sick but now my social interaction is gone. Or at least decreased. I still have my family on a daily basis. Thank god for social media and the support I get from my BD girls on face book. Some of you might say find a hobby. Well it's not that easy. When you feel like shit most days all you can do is lay around. If I was feeling well enough to have a hobby that required me to do something other than lay in bed, I'd be working. Netflix has become my hobby. Thankfully I'm a movie kind of girl. If you weren't a movie person before getting Behcet's, you would become one after, trust me. I have my writing but I'm not always well enough to do that either.
Another thing that is seriously messed up about this whole situation and trying for disability is money. How the hell do they expect people to live? I have long term disability but it takes 90 days to kick in. So basically for me there's a 3 month waiting period without money. I won't even get in to how long I think it's gonna take me to get actual disability from the state- I've heard anywhere from 3 years to 7 years it takes people with Behcet's, sometimes more. Now what about others who don't have long term disability through their work? I'm getting pissed off just thinking about what people have to go through until they get disability. No wonder people end up on the streets or living with family. I hope and wish for a faster way for others to get disability who have to deal with this. Remember stress only makes our symptoms worse. Dealing with money problems is stressful for anyone but multiply it by 100 with a disease like Behcet's.
Oh yeah, let's not forget about health insurance. After 3 months my health insurance is gone unless I pay cobra. We all know how ridiculous cobra costs. Then from what I remember before I can get Minnesota medical assistance, I have to be without health insurance for 3-4 months. So basically I'm fucked if I get sick. I say that because I will have to pay out of pocket. Do you have any idea what it's like to pay out of pocket for a doctor's visit? And we have idiots here who think we don't need health insurance for everyone. Yes we do folks! Don't get me wrong I don't want the government in our lives anymore than you, but some things we do need. [Note: I'm not endorsing any political party. I would like to keep politics out of my blog:)] Try getting a disease like this and live without health insurance. About 10 years ago I was nursing school and was at a job where I didn't qualify for health insurance. I developed an urinary tract infection-severe enough I'm lucky I didn't end up in the hospital. Do you have any idea how much it cost for those antibiotics without insurance? $125. How much for the office visit and labs? I don't recall but I can tell you that office visits right now run around $300 on average minus the labs. Now how can someone afford this when they are not working, waiting for disability, and have no cash coming in?
As you read this, I hope you understand that those of us with Behcet's do want to work but the disease can make it impossible for this to happen. My only words of wisdom for tonight are to be happy with what you have- Job, health insurance, your health, house, etc., because you never know when something like this will hit you and you'll be left without this stuff.
"We tend to forget that happiness doesn't come as a result of getting something we don't have, but rather of recognizing and appreciating what we do have." Frederick Keonig
Note: This post was started way back on 4/4/12. I'm a bit behind with my posting on account of feeling like poo and being engrossed in The Hunger Games trilogy:)
Tuesday, April 24, 2012
What The Beginning Of A Flare Up Feels Like...
Ever wonder what the beginning of a flare up feels like? If so, you're in luck because I'm in the mood to share and happen to be dealing with one.
First I usually start getting fatigued. Fatigue like you've been running around doing errands for 24 hours straight. It eventually gets worse as the time goes on. It gets so bad that you can barely lift your arms and legs. Even typing this is difficult. Extremely difficult. (It became so difficult I had to stop typing and return the next day to finish). Imagine your arms and legs weighing 500 pounds each and try to lift them. Every effort causing you to become more exhausted. If you are lucky enough to get up and move around you feel drunk. And I'm talking the kind of drunk where it's difficult to walk because you feel dizzy and everything's spinning.
Next comes the body aches and pain. For me it feels like every joint in my fingers, hips, knees, and feet have been beaten with a baseball bat. Sometimes more joints are affected. Sometimes it feels like my bones are bruised. The pain starts as a dull ache but then after a couple hours it turns to an intense throbbing pain. Sometimes pain meds help but usually once it gets so bad there's not a damn thing you can do about it. Imagine your legs, hips, feet, and fingers throbbing constantly. There really is no way to describe it as everyone handles pain differently. I ask you to think back to a time you had severe pain- was it a broken bone? A kick to your boys? :) Well times that by 10 and you might be able to understand but probably not.
Next is my favorite- the sweats. (Why can't it be sweets?) This usually comes a couple hours after the fatigue and dull aching pain. My body feels like it's on fire inside and out. I usually run a low grade fever that ranges from 99.2 to 99.6 normally, or I should say since getting sick. This is common for autoimmune disorders. During the beginning of a flare up my temperature is usually higher than the usual. The highest I can recall when checking it was 100.2. I no longer check for a temperature as I am use to this being something that comes along with the disease. You know what's awesome? Laying in bed and sweating for no reason. Wait, I take that back. The most awesome part of this is the nightmares that come with the sweating. Night sweat nightmares I like to call them.
From here it all goes downhill. My flare ups usually last from 1-3 days. I call them my flare ups because my symptoms are 100 times worse than they are normally. These are the days where I do the shuffle walk. And that's assuming I can even get out of bed. My flare ups don't always have these wonderful warning signs. Sometimes I wake up in a flare. Sometimes the flares just hit me. When I first started getting sick this was my warning of what was to come. My body has apparently turned off my tornado warning sign to only work when it wants to:)
Well my friends, don't you feel enlightened now? I'll bet you do.
"Find a place inside where there's joy, and the joy will burn out the pain." Joseph Campbell
First I usually start getting fatigued. Fatigue like you've been running around doing errands for 24 hours straight. It eventually gets worse as the time goes on. It gets so bad that you can barely lift your arms and legs. Even typing this is difficult. Extremely difficult. (It became so difficult I had to stop typing and return the next day to finish). Imagine your arms and legs weighing 500 pounds each and try to lift them. Every effort causing you to become more exhausted. If you are lucky enough to get up and move around you feel drunk. And I'm talking the kind of drunk where it's difficult to walk because you feel dizzy and everything's spinning.
Next comes the body aches and pain. For me it feels like every joint in my fingers, hips, knees, and feet have been beaten with a baseball bat. Sometimes more joints are affected. Sometimes it feels like my bones are bruised. The pain starts as a dull ache but then after a couple hours it turns to an intense throbbing pain. Sometimes pain meds help but usually once it gets so bad there's not a damn thing you can do about it. Imagine your legs, hips, feet, and fingers throbbing constantly. There really is no way to describe it as everyone handles pain differently. I ask you to think back to a time you had severe pain- was it a broken bone? A kick to your boys? :) Well times that by 10 and you might be able to understand but probably not.
Next is my favorite- the sweats. (Why can't it be sweets?) This usually comes a couple hours after the fatigue and dull aching pain. My body feels like it's on fire inside and out. I usually run a low grade fever that ranges from 99.2 to 99.6 normally, or I should say since getting sick. This is common for autoimmune disorders. During the beginning of a flare up my temperature is usually higher than the usual. The highest I can recall when checking it was 100.2. I no longer check for a temperature as I am use to this being something that comes along with the disease. You know what's awesome? Laying in bed and sweating for no reason. Wait, I take that back. The most awesome part of this is the nightmares that come with the sweating. Night sweat nightmares I like to call them.
From here it all goes downhill. My flare ups usually last from 1-3 days. I call them my flare ups because my symptoms are 100 times worse than they are normally. These are the days where I do the shuffle walk. And that's assuming I can even get out of bed. My flare ups don't always have these wonderful warning signs. Sometimes I wake up in a flare. Sometimes the flares just hit me. When I first started getting sick this was my warning of what was to come. My body has apparently turned off my tornado warning sign to only work when it wants to:)
Well my friends, don't you feel enlightened now? I'll bet you do.
"Find a place inside where there's joy, and the joy will burn out the pain." Joseph Campbell
Saturday, April 21, 2012
An Update Of The Past Week...
I took a week off to have to myself and spend some days with Jason. Sometimes in life you just need a break. I spent it up at our trailer at Travelers Country Club in Clear Lake, MN. Despite the weather being cold, it was nice to get away. If ever in MN, come on by! People rent out their trailers all the time. www.travelerscc1.com. Now that I have my advertising done, I'll get on with business:)
My week was fairly good symptom-wise. I still had my usual aches, fatigue, and headaches (among other things). Some days better than others. There was one day where it was minimal. One of those rare days that only happen once every couple months for me. I didn't go out and party it up because the days following the feeling good are always hell. This is what I like to call the tornado effect. The nice weather before the storm, only apply it to your body. I was able to get out and walk that day, which was lovely. It was nice to feel the sun on my face, hear the birds chirp, and take in the views of nature. I was able to take some pics of the muskrats that have a home down by the lake. I can still close my eyes and enjoy the walk even though many days have passed since. Maybe you think I'm talking too much about this? Well too bad. You don't realize what you miss until it's gone. It's the little things people rush past because they are too busy caught up in the hustle and bustle. A walk in the sunshine, the laughter of another person, the clouds in the sky, the flowers blooming. Need I go on? The "stop and smell the roses" saying really means something.
What would a week be without dealing with some kind of medication problem for me? Heaven. That's what. I am now onto my millionth medication to try (I may be exaggerating a bit) but that's what it feels like some days. There are times when I want to give up trying meds since my body has decided it wants to be allergic to almost all medications. But then I think what if this one is the one that will get me back to normal? I only have about five more I can try before my list of possibilities runs out. This week it was a call from the pharmacy saying my copay for Humira is going to be $490. Yea, I'll get right on that. Maybe do a little prostitution and that should cover it. I'm joking people! Thankfully Humira has some patient card program that once you register with them your copay is somewhere around $5-10. One blow job ought to cover it. Once again, joking! Or selling myself short:) I registered with Humira and they say it will take 10 days before I get the card. Then I can call my pharmacy and they run the card number and boom, cheap medication. Is that even possible in the USA? Not usually. Before I can start my Humira I need to have a mantoux done. This is to test for tuberculosis if you are not familiar with the term. Just another pain in the butt thing to do and what makes this particular test difficult is needing to have the test read 48-72 hours after getting it administered. Why is this hard? Because I never know how I am going to feel.
That about sums up this past week give or take. I do want to say a special thanks to my dad's cousin Kathy Lundquist for taking the time to go to Tea Source and getting me peppermint tea. You rock Kathy! I am enjoying a cup of tea as I write this. Num Num Num is all I can say:)
I think I'll be back on track to writing more this week. I have several drafts I've started but need to finish. The quote I choose for this post is more my feelings of having to deal with trying medication after medication. I came across it earlier this week and love it. Of course you can apply it to every day life, especially every day Behcet's. I've also decided to throw in some pics of my muskrat friends for fun. And yes I'm up late as it's one of those days that my body is screaming at me in pain. Have a feeling I'll be up off and on tonight.
When the world says, "Give up,"
Hope whispers, "Try it one more time."
Author Unknown
My week was fairly good symptom-wise. I still had my usual aches, fatigue, and headaches (among other things). Some days better than others. There was one day where it was minimal. One of those rare days that only happen once every couple months for me. I didn't go out and party it up because the days following the feeling good are always hell. This is what I like to call the tornado effect. The nice weather before the storm, only apply it to your body. I was able to get out and walk that day, which was lovely. It was nice to feel the sun on my face, hear the birds chirp, and take in the views of nature. I was able to take some pics of the muskrats that have a home down by the lake. I can still close my eyes and enjoy the walk even though many days have passed since. Maybe you think I'm talking too much about this? Well too bad. You don't realize what you miss until it's gone. It's the little things people rush past because they are too busy caught up in the hustle and bustle. A walk in the sunshine, the laughter of another person, the clouds in the sky, the flowers blooming. Need I go on? The "stop and smell the roses" saying really means something.
What would a week be without dealing with some kind of medication problem for me? Heaven. That's what. I am now onto my millionth medication to try (I may be exaggerating a bit) but that's what it feels like some days. There are times when I want to give up trying meds since my body has decided it wants to be allergic to almost all medications. But then I think what if this one is the one that will get me back to normal? I only have about five more I can try before my list of possibilities runs out. This week it was a call from the pharmacy saying my copay for Humira is going to be $490. Yea, I'll get right on that. Maybe do a little prostitution and that should cover it. I'm joking people! Thankfully Humira has some patient card program that once you register with them your copay is somewhere around $5-10. One blow job ought to cover it. Once again, joking! Or selling myself short:) I registered with Humira and they say it will take 10 days before I get the card. Then I can call my pharmacy and they run the card number and boom, cheap medication. Is that even possible in the USA? Not usually. Before I can start my Humira I need to have a mantoux done. This is to test for tuberculosis if you are not familiar with the term. Just another pain in the butt thing to do and what makes this particular test difficult is needing to have the test read 48-72 hours after getting it administered. Why is this hard? Because I never know how I am going to feel.
That about sums up this past week give or take. I do want to say a special thanks to my dad's cousin Kathy Lundquist for taking the time to go to Tea Source and getting me peppermint tea. You rock Kathy! I am enjoying a cup of tea as I write this. Num Num Num is all I can say:)
I think I'll be back on track to writing more this week. I have several drafts I've started but need to finish. The quote I choose for this post is more my feelings of having to deal with trying medication after medication. I came across it earlier this week and love it. Of course you can apply it to every day life, especially every day Behcet's. I've also decided to throw in some pics of my muskrat friends for fun. And yes I'm up late as it's one of those days that my body is screaming at me in pain. Have a feeling I'll be up off and on tonight.
When the world says, "Give up,"
Hope whispers, "Try it one more time."
Author Unknown
Subscribe to:
Posts (Atom)