This one's gonna be a short entry.
Yesterday I made a visit to a new neurologist. Or new to me- Dr. Achenbach from Allina Cambridge. I was actually going to see her initially but then went to Noran instead since they were listed on the ABDA website.
I'm very happy with my visit yesterday. She actually knows about Behcet's. Really?! Yes, a doctor who knows about Behcet's! Why does she? Because she did a year of internal medicine before neurology and dealt with Behcet's patients at the hospital many times. So good news for me!
She wants me to go off the tramadol as it is known to cause seizures for people who have no risk/reason for developing them. She worded it much better than me of course:) FYI: If you have any neurological problems you should not be on tramadol or wellbutrin since they can cause seizures. There's your medical lesson for the day. She would like me to try butterbur for headaches once I know what's going on with my IV remicade. I am waiting to hear if Allina Partners Care covers in clinic IV remicade since I am without insurance. By the way, how are people suppose to get better without insurance? I'm stuck in a 4 month loop without insurance. Awesome times. Thankfully Allina has a thing called Allina Partners Care which you can see Allina providers and get your visits covered for free. I can't imagine what my bills would be like without this! Fucking ridiculous is what.
Butterbur is suppose to cut headaches by 50%, which would be frickin' awesome! I've been dealing with temporal and occipital headaches for as long as I can remember now. A side note: another medication I can cross off my list for not working is the Zonegran. She said she wouldn't try me on a prescription medication because my Behcet's isn't under control. What I wouldn't give to get the Behcet's under control... I don't even know what under control means anymore. The last time I felt normal was July 2011 when I was on the prednisone. Damn allergies...or damn my body for not tolerating medications... If I don't get on the remicade, then I will try the butterbur. If I get on the remicade then I will hold off on the butterbur.
She also wants me to try a gluten free diet to see if it helps with my inflammation. So I am now going to learn about that. Wish me luck! I know I'm gonna need it. I also need to keep a headache journal. We also rechecked vitamin D and vitamin B level since it's been a year. I think that about sums it up. Hopefully I recalled everything right. And I know this post is all over the place but too bad. Not feeling well enough to make it perfect.
Hope everyone has a wonderful weekend!
"Life is about increasing understanding by expanding our ability to experience new things. New realities, points of view other than the ones familiar to us."~Ken Dyers
As I was typing this up, I heard back from my rheumy's office. I am scheduled for my first Remicade infusion on August 7th, woot woot!
Friday, July 27, 2012
Friday, July 20, 2012
My Ode To Behcet's...
My Ode to Behcet's
Oh Behcet's,
What would I do without you?
I'll tell you what:
Not have to deal with allergies to every medication,
Sleep a good nights sleep,
Not feel like I'm 300 years old,
Enjoy the warm weather instead of dreading it,
Enjoy gardening, walks, even working and cleaning the house!
Live life again...
What do I think of you?
Screw you Behcet's!
My Ode to Behcet's...
(Trust me I could go on for hours of what I'd do without it)
I decided to write this after yet another reaction to a new medication. Last night I finally tried Enbrel. Why did I wait so long to try it you ask? Simple. I haven't been feeling well. I try to wait until I'm feeling somewhat decent before starting a new medication in case I end up having to go the ER. Been there, done that and it's not fun.
So what happened with Enbrel right?
First you need to know Enbrel is an injection. The preferred site is your leg according to the info they sent me. And I've gotten way to much shit from the manufacturer of Enbrel. Way too much. I held the pen and Jason hit the button for me for it to inject. I made it less than 5 seconds. Probably more like 2 seconds. It was a burning pain nothing like I've felt before. The rest of the night I had a burning pain in my leg and nausea that woke me up every 30 minutes. This continued throughout the night, so sleep there was not. I woke up this morning and there is a scab where the injection was given. Needless to say I will be watching the area closely and I can add another medication to my growing list of allergies.
On a completely different note I am very upset about a letter my Behcet's friend received from the doctor. I'm upset for many reasons for this one and cannot say all I want to because I need to keep my friend anonymous. I feel it's important you read this and understand what we go through as someone with chronic pain. I've known druggies before and the person who received this letter is NOT a druggie. Here's the letter.
Dear ***,
I'm sorry to hear that *** had another bad episode of pain. I think we did have a protocol of sorts, it just isn't always sufficient to completely eliminate her/his pain- we talked about using ibuprofen vs. naproxen, and the other measures, but it just isn't enough sometimes. The difficulty is that we really can't do narcotics either- they may distract him/her from the pain since they can give her/him a kind of "high", but it's not appropriate therapy, and it will ultimately lead to him/her becoming dependant on them. In fact, I wonder if she/he is already dependant on them and that's part of the reason why his/her pain keeps coming back. If we wanted to further look at this possibility we could perhaps consider having her/him see an addiction specialist for an evaluation, to help us decide if some amount of narcotic dependence could be playing a role in his/her pain.
Another thought about this particular episode, since she/he has the blurry vision and the nausea is that it seems an awful lot like a migraine and we could try a triptan, such as sumatriptan. I know he's/she's tried it in the past without success, but as long as she's/he's not had a serious side effect from it, it might not hurt to try it again. I will go ahead and order some to the WM pharmacy if you decide you would like to pick it up and give it a try (it's a nasal spray- can use it twice in 24 hours, and should not use it for more than 4 days in a 30 day period).
Another thing we could consider adding to the protocol would be a therapist visit. Perhaps at times like this when she/he gets really bad, myself or Dr. Monroe could try to contact behavioral health about getting him/her seen that day by the behavioral health department so he/she could talk with a therapist about CBT pain management techniques and they can help her/him overcome her/his acute crisis (I mean- in addition to the regular CBT treatments we are setting up, I'm wondering if maybe we can use them as a resource to help with these acute attacks).
I'm sorry everything has been so frustrating, hopefully some of these ideas might help us out. Cheers-
Dr. Roberts
First, I'd like to let you know Dr. Roberts that not everyone gets a "high" as you call it from medications. Second, narcotics, if used as prescribed, the addiction risk is low. Why do I know this? Because I've discussed this with my doctor friends. Third, I hope that you require narcotics some day and they do not give them to you. Maybe you'll be blessed with this disease and can figure out how to manage without pain pills. Fourth, this doctor should be forced to go back to med school and be taught a compassion/caring class. And last, "cheers"? Really? There's nothing cheerful about this letter and maybe you are thinking drinking? Maybe your secret addiction? Perhaps...(think I'm being mean? Too bad, get off my blog)
Yes, this note upsets me because when I my adhesion come back in 2007 I went to MAPS pain clinic in Coon Rapids by my own choice and was treated like a drug addict because I used 30 vicodin every 2 months for my pelvic adhesion pain. (I will go more into it at a later date) So I do understand what it's like to be on the side of needing medications. I also understand the side of dealing with drug seekers- I saw it all too often at the clinics when I was working. I've also worked with doctors who refuse to give narcotics to anyone. I've also worked with doctors who will only give older people narcotics and frown upon the younger people who need it. So what's the solution? Good question. A magic button health care professionals can push that relieves all pain for patients so we don't need medications. Sounds good to me.
So what's my excuse for the monthly posting? It's summer and I've been on my anti-Internet kick. So there:)
"Never forget why you went into the medical profession because some day you may need someone to help take care of you." (Let's hope they went into the field to help others and not for the money, right?) ~Chrissy
Oh Behcet's,
What would I do without you?
I'll tell you what:
Not have to deal with allergies to every medication,
Sleep a good nights sleep,
Not feel like I'm 300 years old,
Enjoy the warm weather instead of dreading it,
Enjoy gardening, walks, even working and cleaning the house!
Live life again...
What do I think of you?
Screw you Behcet's!
My Ode to Behcet's...
(Trust me I could go on for hours of what I'd do without it)
I decided to write this after yet another reaction to a new medication. Last night I finally tried Enbrel. Why did I wait so long to try it you ask? Simple. I haven't been feeling well. I try to wait until I'm feeling somewhat decent before starting a new medication in case I end up having to go the ER. Been there, done that and it's not fun.
So what happened with Enbrel right?
First you need to know Enbrel is an injection. The preferred site is your leg according to the info they sent me. And I've gotten way to much shit from the manufacturer of Enbrel. Way too much. I held the pen and Jason hit the button for me for it to inject. I made it less than 5 seconds. Probably more like 2 seconds. It was a burning pain nothing like I've felt before. The rest of the night I had a burning pain in my leg and nausea that woke me up every 30 minutes. This continued throughout the night, so sleep there was not. I woke up this morning and there is a scab where the injection was given. Needless to say I will be watching the area closely and I can add another medication to my growing list of allergies.
On a completely different note I am very upset about a letter my Behcet's friend received from the doctor. I'm upset for many reasons for this one and cannot say all I want to because I need to keep my friend anonymous. I feel it's important you read this and understand what we go through as someone with chronic pain. I've known druggies before and the person who received this letter is NOT a druggie. Here's the letter.
Dear ***,
I'm sorry to hear that *** had another bad episode of pain. I think we did have a protocol of sorts, it just isn't always sufficient to completely eliminate her/his pain- we talked about using ibuprofen vs. naproxen, and the other measures, but it just isn't enough sometimes. The difficulty is that we really can't do narcotics either- they may distract him/her from the pain since they can give her/him a kind of "high", but it's not appropriate therapy, and it will ultimately lead to him/her becoming dependant on them. In fact, I wonder if she/he is already dependant on them and that's part of the reason why his/her pain keeps coming back. If we wanted to further look at this possibility we could perhaps consider having her/him see an addiction specialist for an evaluation, to help us decide if some amount of narcotic dependence could be playing a role in his/her pain.
Another thought about this particular episode, since she/he has the blurry vision and the nausea is that it seems an awful lot like a migraine and we could try a triptan, such as sumatriptan. I know he's/she's tried it in the past without success, but as long as she's/he's not had a serious side effect from it, it might not hurt to try it again. I will go ahead and order some to the WM pharmacy if you decide you would like to pick it up and give it a try (it's a nasal spray- can use it twice in 24 hours, and should not use it for more than 4 days in a 30 day period).
Another thing we could consider adding to the protocol would be a therapist visit. Perhaps at times like this when she/he gets really bad, myself or Dr. Monroe could try to contact behavioral health about getting him/her seen that day by the behavioral health department so he/she could talk with a therapist about CBT pain management techniques and they can help her/him overcome her/his acute crisis (I mean- in addition to the regular CBT treatments we are setting up, I'm wondering if maybe we can use them as a resource to help with these acute attacks).
I'm sorry everything has been so frustrating, hopefully some of these ideas might help us out. Cheers-
Dr. Roberts
First, I'd like to let you know Dr. Roberts that not everyone gets a "high" as you call it from medications. Second, narcotics, if used as prescribed, the addiction risk is low. Why do I know this? Because I've discussed this with my doctor friends. Third, I hope that you require narcotics some day and they do not give them to you. Maybe you'll be blessed with this disease and can figure out how to manage without pain pills. Fourth, this doctor should be forced to go back to med school and be taught a compassion/caring class. And last, "cheers"? Really? There's nothing cheerful about this letter and maybe you are thinking drinking? Maybe your secret addiction? Perhaps...(think I'm being mean? Too bad, get off my blog)
Yes, this note upsets me because when I my adhesion come back in 2007 I went to MAPS pain clinic in Coon Rapids by my own choice and was treated like a drug addict because I used 30 vicodin every 2 months for my pelvic adhesion pain. (I will go more into it at a later date) So I do understand what it's like to be on the side of needing medications. I also understand the side of dealing with drug seekers- I saw it all too often at the clinics when I was working. I've also worked with doctors who refuse to give narcotics to anyone. I've also worked with doctors who will only give older people narcotics and frown upon the younger people who need it. So what's the solution? Good question. A magic button health care professionals can push that relieves all pain for patients so we don't need medications. Sounds good to me.
So what's my excuse for the monthly posting? It's summer and I've been on my anti-Internet kick. So there:)
"Never forget why you went into the medical profession because some day you may need someone to help take care of you." (Let's hope they went into the field to help others and not for the money, right?) ~Chrissy
Friday, June 15, 2012
One more med to cross of the list...
As usual my body has decided to reject the new medication to treat my Behcet's. Cross Humira off the list. I'll make this as least sharing as possible for those of you who don't do well hearing about female problems...
I started the Humira on a Wednesday night. I couldn't push the button to give myself the injection. No matter how hard I tried I just couldn't do it. I knew what was coming. Yes, I can get a shot no problem, but injecting yourself is another matter. Thankfully Jacob, my 12 year old brother-in-law, had no problem hitting the button for me. In fact he was happy to do it. Not sure if it's because he got to give a shot or to get back at me for making him get shots at the doctor...
The good news is I didn't end up in the ER-yay! The bad news is it gave me my menstrual cycle. Here's the TMI- you'll get over it. I suppress my cycle due to my endometriosis and pelvic adhesion. They cause major pain when I have my cycle. Imagine laying in bed for 5 days straight when you get your cycle because it feels like someone is repeatedly punching you in the stomach. I'll stop there. At first I didn't think anything of it. Thought it was some fluke. Then it happened again the following week. Not normal. So we figured it was the Humira. There's a 1%-5% chance of patient's on Humira getting menstrual irregularity I'm told.
Next on my list is Enbrel. The prior authorization was approved. By the way, what a joke prior auths are. Those will be a different nights topic:) I called to activate my Enbrel card today so I can get it for either free or very cheap. Next was the call to the pharmacy with my Enbrel card number. For some reason the pharmacy is having problems running my card. Not sure if it's because they don't do it enough (as one pharmacist admitted via phone) or if there is something wrong with my activation, but I doubt that as I spoke with Enbrel twice to confirm the activation was working. Hopefully the pharmacy will call tomorrow with good news. A site note about Enbrel or the makers of it is they send out a sharps container for your needles once they are used. Do you know how great that is? Humira didn't do that. The drug companies make way too much money, every company should be required to do this by law.
Brief update on the lawyer. I chose Hoglund Law. She was very nice and well informed. They took on my case. I left actually feeling good. I didn't have to defend myself like most of us with Behcet's do over and over again. I did a brief update via phone today with another associate of theirs. I am now waiting for the next decision from disability which can take 3-5 months. Drawing a blank to the specific name of it at the moment.
On a side note, I managed to drop a heavy object on my foot Tuesday. More like the object fell off a shelf due to me moving something close by. Went to the doctor today to get an x-ray due to worsening symptoms. There might be one or two areas that could be fractured but it's hard to tell due to where the injury is. Waiting for the official read from the radiologist. Prob not fractured but better to be safe then sorry. Plus I got a stylish black surgical shoe from the doctor's office. You are so jealous aren't you? So that's where I'm at all around. Pain, swelling, and all that good stuff is the same. Headaches have been worse this week. Blah, blah, blah, right?
Good night everyone! I'm off to have my usual crazy dreams from the night sweats...
Good times, Good times...
“The good times of today, are the sad thoughts of tomorrow.” Bob Marley
I started the Humira on a Wednesday night. I couldn't push the button to give myself the injection. No matter how hard I tried I just couldn't do it. I knew what was coming. Yes, I can get a shot no problem, but injecting yourself is another matter. Thankfully Jacob, my 12 year old brother-in-law, had no problem hitting the button for me. In fact he was happy to do it. Not sure if it's because he got to give a shot or to get back at me for making him get shots at the doctor...
The good news is I didn't end up in the ER-yay! The bad news is it gave me my menstrual cycle. Here's the TMI- you'll get over it. I suppress my cycle due to my endometriosis and pelvic adhesion. They cause major pain when I have my cycle. Imagine laying in bed for 5 days straight when you get your cycle because it feels like someone is repeatedly punching you in the stomach. I'll stop there. At first I didn't think anything of it. Thought it was some fluke. Then it happened again the following week. Not normal. So we figured it was the Humira. There's a 1%-5% chance of patient's on Humira getting menstrual irregularity I'm told.
Next on my list is Enbrel. The prior authorization was approved. By the way, what a joke prior auths are. Those will be a different nights topic:) I called to activate my Enbrel card today so I can get it for either free or very cheap. Next was the call to the pharmacy with my Enbrel card number. For some reason the pharmacy is having problems running my card. Not sure if it's because they don't do it enough (as one pharmacist admitted via phone) or if there is something wrong with my activation, but I doubt that as I spoke with Enbrel twice to confirm the activation was working. Hopefully the pharmacy will call tomorrow with good news. A site note about Enbrel or the makers of it is they send out a sharps container for your needles once they are used. Do you know how great that is? Humira didn't do that. The drug companies make way too much money, every company should be required to do this by law.
Brief update on the lawyer. I chose Hoglund Law. She was very nice and well informed. They took on my case. I left actually feeling good. I didn't have to defend myself like most of us with Behcet's do over and over again. I did a brief update via phone today with another associate of theirs. I am now waiting for the next decision from disability which can take 3-5 months. Drawing a blank to the specific name of it at the moment.
On a side note, I managed to drop a heavy object on my foot Tuesday. More like the object fell off a shelf due to me moving something close by. Went to the doctor today to get an x-ray due to worsening symptoms. There might be one or two areas that could be fractured but it's hard to tell due to where the injury is. Waiting for the official read from the radiologist. Prob not fractured but better to be safe then sorry. Plus I got a stylish black surgical shoe from the doctor's office. You are so jealous aren't you? So that's where I'm at all around. Pain, swelling, and all that good stuff is the same. Headaches have been worse this week. Blah, blah, blah, right?
Good night everyone! I'm off to have my usual crazy dreams from the night sweats...
Good times, Good times...
“The good times of today, are the sad thoughts of tomorrow.” Bob Marley
Wednesday, May 30, 2012
The Walking Dead? No, it's just Behcet's...
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:
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 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:)
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