This post is about the first time I was really sick, little did I know what was coming my way...
The day was Wednesday, February 16, 2011. I think if you ask most of us with Behcet's the day that we first got sick, we can give you the exact date. Why is this? Because it has changed our lives so dramatically and not for the better.
I was living in St. Paul, MN at the time and working in Eagan, MN. I woke up feeling horrible but had missed a couple days that week and the week before due to being sick. I forced myself to go to work thinking "I need to show them I'm sick". I have this horrible need to show people I'm not lying and that I'm really sick. I also have this stubbornness to try to work no matter how sick I am. Why? Who knows.
By the time I made it to work, which was a twenty minute ride, I was coughing and having a hard time breathing. I put myself on my doctors schedule who I was working with at the time, Dr. Gladen, and my friend/coworker Amy roomed me. The more I talked, the more I coughed. The more I moved, the more I coughed. It was horrible! I had never had anything like this. My respiration's were 44. Normal adult respiration's are between 12 and 20. I had an x-ray and labs done. She thought she seen a spot on my lungs and treated me for right middle lobe pneumonia. At this point I also had a severe sore throat, the worst I had ever had. It actually felt like there was something in my throat. Upon exam, my soft palate was lower than it should be. She was concerned I had an abscess in my neck. I said yes to a CT scan since this was the worst pain I've been in my life. My CT scan came back normal thankfully, the final read on my x-ray by the radiologist was normal as well, and lung sounds on exam was normal too. So if it was all normal, why was I feeling so crappy? Why did I get better on the z-pack? All questions I didn't ask at the time. I assumed it was early atypical pneumonia.
Also at this time my white blood cell count and neutrophils were elevated, while my lymphocytes were low. I continued to be sick until the weekend with the next 3 days being the worst. Looking back, I definitely should have been in the hospital but being the stubborn person I am...I recall having to sleep sitting up. One time I thought I was well enough to lay in bed, what a mistake that was. I woke up coughing out of a dead sleep and couldn't catch my breathe and I started to see stars and thought this is it, I'm going to die so I whacked my significant other, Jason, with my hand to wake him up. Thankfully I was able to catch my breathe. That was definitely one of the most scariest moments of being sick. During this sickness there was several times where Jason asked me if I wanted to go to the hospital. If I had known then what I know now, I would've gone.
Guess what? 14 days later the symptoms came back but they were a little different this time. This time my throat still hurt and it felt like something was still in it, but I had white spots like you would with strep throat. Little did I know at the time they were small ulcers starting. You could actually see the gland on the right side of my neck. Now when you work with nurses and doctors and they are like "whoa, that's crazy!" what do you think? This time I was tested for mono and strep throat again. All negative but was treated with a z-pack since it helped the first time. I requested to be treated again as last time the symptoms worsened over night.
At this point I thought this is it. I'll get better. Famous last words...
I continued to have oral ulcers, finger joint pain, and severe episodes of fatigue. I saw the doctor I was working with at that time, Dr. Doyle, for further testing. She ran some basic tests checking for vitamin deficiencies, ANA, inflammation markers, and we cultured the ulcers. All negative except a slightly elevated sed rate and CRP.
Next was a visit to who would be my first rheumatologist, Dr. Oberto-Medina. Time for more testing:) While I was at that appointment, I had what looks like the lupus rash on my face and a rash on my chest. She was so convinced that I had lupus, she told me to stay out of the sun until my tests came back. Guess what? All was negative except for my elevated sed rate and CRP. She wanted me to follow up in 6 weeks. Something to note at this time: one of my lupus anticoagulants was initially abnormal but upon further testing it was negative.
During the time of waiting to see Dr. Oberto-Medina again, I started having some GI symptoms. Diarrhea and horrible abdominal pain. Could it be Crohn's? I had also lost weight since first becoming sick.(yippee!) And not on purpose. So I was off to GI. Colonoscopy and endoscopy were next on my list of the many tests I would have. Both tests came back negative. Surprise surprise. At this point I remember thinking what the hell do I have? This is not normal for someone to be going through. A 32 year old should not be feeling like she needs to sleep at all hours of the day. She shouldn't be waking up with swollen fingers. She shouldn't have ulcers almost constantly. I was starting to get pissy that we couldn't figure it out.
I went back to Dr. Oberto-Medina with this information. This was the first time I had heard the "B" word. And by B word, I mean Behcet's. She wanted me to go to Infectious Disease to rule out anything else before treating me for Behcet's. Seriously? Haven't I been through enough? Off I went...
I seen Dr. Worku, who is the best infectious disease doctor out there as far as I am concerned. The fun part of this visit was getting checked for every possible STD out there. All blood tests thankfully and girls will know what I mean:) I happen to have a cluster of three ulcers at the time of visit so we once again cultured the ulcers. Everything came back negative. During the visit, he said as long as the tests are negative, he agrees with the diagnosis of Behcet's. Even put it in his documentation.
Back to Dr. Oberto-Medina another six weeks later from the last time I had seen her. This is when I started getting treated for the horrible B word.
Looking back, my first real experience of a flare up was the week of Thanksgiving 2010. I had same symptoms- severe sore throat, fatigue, and just felt like shit. I thought it was a horrible virus at the time. What I wouldn't give for it to just be that now. But hope in one hand, shit in the other and see what fills up first, right? Ok that's a bit negative but that's how I feel today...just one of those days.
It's been a struggle with meds and doctors since this and I will share more of my story in another post. If I continued on this post, I think I'd lose you as it's long enough as is:)
"Health is like munny, we never have a true idea of its value until we lose it."Josh Billings
Saturday, March 31, 2012
Wednesday, March 28, 2012
What Made Me Sick?
What made me sick? This is a question I think about more often than I should. First I'll explain what the medical community believes and then I'll share my thoughts...
So what causes Behcet's? Another million dollar question. You figure it out and you'll probably be rich. They say it's likely due to genetic and environmental factors. The truth is nobody knows for sure. There is research being done to try to find out the cause. The American Behcet's Disease Association website has awesome info about current studies and info for those of you with questions about this disease.
http://www.behcets.com/site/pp.asp?c=bhJIJSOCJrH&b=260551
As for my story, it goes like this:
I was living in a house full of mold for 4 years. We didn't know how bad it was until it started showing up on our walls, which was about 2 1/2 year into us living there. I recall having the sneezing, itchy eyes, and other symptoms you would get from being around mold. In February of 2011, I got real sick, which I will talk more in detail about in another post. I've had numerous doctors ask me if I had a stressful life event at this time of my life and the answer is always the same: NO
I believe the mold was my trigger.
As for genetics, there is nobody in my family that I am aware of with any type of autoimmune disease. I am being treated for endometriosis and a pelvic adhesion since 2005. The cause is unknown. They told me I was just one of those people who developed it and couldn't give me a reason why. Thank you God of Health, I always wanted to be unique. (sarcasm for those of you who don't know me). The interesting part of this is endometriosis is a common thing for us girls with Behcet's. Or so I've learned from other girls with Behcet's I talk to. So is this something that was brewing in my body and waiting for the environmental trigger to set it off?
Something else I find fascinating is the link above talks about Streptococcus being associated with the disease. If you haven't clicked on the link, now would be a good time:) I had my tonsils out when I was 6 years old due to chronic strep infections. Is this part of it? Maybe.
I know there are others who have a similar story to mine with the mold exposure. For me, there is no doubt that mold was my trigger. I often think about what my life would be like if I didn't live in that house. Would I have developed this disease? Would I still be leading a normal life? Going to school. Working full time. Being able to enjoy the normal things in life. Why did I get this and Jason didn't? I try not to think too much about it since there is nothing I can do to change it, but there is always going to be those "what ifs".
“Life may not be the party we hoped for, but while we’re here we should dance.” Unknown
So what causes Behcet's? Another million dollar question. You figure it out and you'll probably be rich. They say it's likely due to genetic and environmental factors. The truth is nobody knows for sure. There is research being done to try to find out the cause. The American Behcet's Disease Association website has awesome info about current studies and info for those of you with questions about this disease.
http://www.behcets.com/site/pp.asp?c=bhJIJSOCJrH&b=260551
As for my story, it goes like this:
I was living in a house full of mold for 4 years. We didn't know how bad it was until it started showing up on our walls, which was about 2 1/2 year into us living there. I recall having the sneezing, itchy eyes, and other symptoms you would get from being around mold. In February of 2011, I got real sick, which I will talk more in detail about in another post. I've had numerous doctors ask me if I had a stressful life event at this time of my life and the answer is always the same: NO
I believe the mold was my trigger.
As for genetics, there is nobody in my family that I am aware of with any type of autoimmune disease. I am being treated for endometriosis and a pelvic adhesion since 2005. The cause is unknown. They told me I was just one of those people who developed it and couldn't give me a reason why. Thank you God of Health, I always wanted to be unique. (sarcasm for those of you who don't know me). The interesting part of this is endometriosis is a common thing for us girls with Behcet's. Or so I've learned from other girls with Behcet's I talk to. So is this something that was brewing in my body and waiting for the environmental trigger to set it off?
Something else I find fascinating is the link above talks about Streptococcus being associated with the disease. If you haven't clicked on the link, now would be a good time:) I had my tonsils out when I was 6 years old due to chronic strep infections. Is this part of it? Maybe.
I know there are others who have a similar story to mine with the mold exposure. For me, there is no doubt that mold was my trigger. I often think about what my life would be like if I didn't live in that house. Would I have developed this disease? Would I still be leading a normal life? Going to school. Working full time. Being able to enjoy the normal things in life. Why did I get this and Jason didn't? I try not to think too much about it since there is nothing I can do to change it, but there is always going to be those "what ifs".
“Life may not be the party we hoped for, but while we’re here we should dance.” Unknown
Thursday, March 22, 2012
Medications I've Tried and Failed...
I thought I'd share my struggles with medications today. Apparently I have developed into one of those people that has numerous allergies/intolerance's to medications, which makes for some fun times.
The first medication I was placed on was Prednisone. This was because at the time I couldn't afford Colcrys as it was no longer generic. Thank you a-hole drug companies and our government for that one. So the evil Prednisone... Or so it's called by most of us BD'ers. For me, Prednisone was the best medication ever! I actually felt normal. Yes, normal. I could work and felt great. Didn't cure me 100% but at least I was able to function. I could care less that I might develop diabetes or turn into a raging bitch while on it. Even if I would've sprouted wings and a moustache, I would've stayed on it. As long as I felt good, who cares?! A little less than 3 weeks into it, I developed severe tooth pain. The tooth pain had slowly gotten worse and by the time I made it to the dentist I was convinced I would need 3 root canals- no joke! I was prepared for at least 3 root canals that day. The dentist then proceeded to tell me there was nothing wrong with my teeth. Wait, what?! Nothing wrong. She told me to go off the Prednisone. Low and behold, my teeth got better almost immediately.
Now that the Prednisone was out, I was told by my rheumy at the time, the only other medication there was is the Colcrys. No! It's too expensive because there is no generic in the United States. I started looking into Canada. Thank god for Canada! I was going to order 3 months worth for $45, which is great since that was the cost to me with my insurance here in the States for 1 month! Seriously, how do they ever expect people to afford this shit? Especially when you're sick and are struggling to work and pay bills. The day I was going to order, my friend/coworker, Dr. Tara Doyle found a coupon for it for only $15 a month. I set forth to the pharmacy, coupon in hand, and determined. Started the medication, within a day I started getting this numbness/tingling/burning in my upper lips and teeth. I tried the Colcrys several times to make sure this was truly causing it. Same results every time. Seriously? Why is this happening to me? This was just the start of numerous medications I would try. Little did I know...
Many months had passed where I was without a rhuemy- 6 months to be exact. I was on no medication aside from pain pills and OTC stuff. I found my current rheumy, Dr. Grandits- thank god for her, who said of course there's other medications you can try! Huh? I was told by 2 other rheumy's there is no other meds for Behcet's. Dr. Grandits gave me a list of 14! Woot Woot!
We started with Plaquenil. I thought I'll take it at work in case I have a reaction. I had a reaction alright! It landed me right in the bathroom vomiting. I felt like complete crap the rest of the day/night. I couldn't even eat dinner. Needless to say, that was the end of that one.
Methotrexate was next on the list. This one landed me in the ER. I took it at night and started feeling icky, but was getting use to feeling icky when starting new meds. I woke up looking like I had a bad sunburn on the upper half of my body. Even warm to the touch like sunburn. As the day went on, I started getting pain in my kidney area and decreased urine output. I only went to the bathroom twice from 8 AM-1PM. So totally not normal for me and I had been chugging water like crazy. Finally decided I better go in to make sure I wasn't going into kidney failure. The doctor was more concerned with the redness than the kidneys, not me- I want my kidneys intact and working! Thankfully they ended up being fine and guess what he prescribed? A Prednisone taper. Ha ha! Yeah right. I've learned I can't take more than 10 mg in a week of Prednisone or I get tooth sensitivity. And yes, I tried doing Prednisone once a week to see if it would make a difference with my symptoms but it didn't and I can't go around feeling like I need root canals every day for the rest of my life. It was a miserable couple days waiting for the Methotrexate to pass out of my system.
Next was Arava. This is the most horrible medication out there in my opinion. I started getting nightmares. The kind of nightmares where I would wake up sweating, panting, and heart racing. Makes for a good horror movie or book but not something I care for on a daily basis. The worst part of this medication is it fucked with my memory. I wasn't sure if I was getting neuro-behcet's or if it was from the medication at the time. Now looking back I know it's from the medication. This was the medication I was on around Valentine's day. I had sent out cards to my family the week before and then again the week of Valentine's day. I have no recollection of sending them out the first time. None what-so-ever. Scary. There were also some other instances of me forgetting small things. Either way, never something you want to go through when you're only in your early 30's.
During the time of no rheumy, my primary doctor prescribed me Cymbalta for pain. I ended up getting a severe dry mouth with this. Nothing I did helped. I tried sucking on things- cough drops and candy- get your minds out of the gutter:) Tried drinking water, juice, etc. Nothing helped, so scratched that one off my list. This was another one of those lovely drugs that isn't covered by insurance. Thankfully on the manufacturer's website, there was a free 30 day trial.
Can also scratch off Gabapentin from the pain medication list too. I had tried this years ago for my pelvic adhesion/endometriosis. Even on the lowest possible dose, I couldn't handle it. I took it at night, almost fell over several times when needing to go to the bathroom. The worse part was trying to wake up from it the next day. I wouldn't fully come out of the medication hangover, as I like to call them, until 2 PM the following day. I tried this for about a week hoping my body would adjust to it. No such luck.
Then there's the most recent, Topamax. This was to be for the BD headaches. I took it at night, hoping it would help me sleep. Guess what? I'm one of the 3% who get insomnia from it. Awesome. Once again, I'm special. So I took it during the day hoping it would give me a little kick of energy since those of us with BD lack it. Maybe helped for a couple days. I was to increase the medication up as time went on. I had horrible stomach issues from it and it also affected my memory and thought process. By the third week, I had to sleep with a bucket by my bed from the intense nausea. Even my nausea medication, Compazine, didn't fully make it go away. I was so miserable by week 3 and at the time I wasn't sure what it was from- a bad flare up? the Topamax? the Imuran? After tinkering with my meds, I learned it was from the Topamax. Waiting to hear back from my neuro to see what the next step is. I believe it's going to be another medication. The fun never stops.
I am currently on Imuran and tolerating it. I can't do a full dose, but that's OK. I'll work my way up there. Crossing fingers it will work or make a difference. At least I haven't ended up in the ER or bathroom while on it. Yet...
I won't bother you with the other medications- antibiotics and birth controls that I've had a reaction to. My allergy/intolerance list is now at 11. I have no doubt this list will grow. I never thought I'd be one of "those" people. Either way, this has not stopped me from continuing to try other medications. My goal is to find something that makes me feel like the Prednisone did because what I wouldn't give to feel "normal" again.
The first medication I was placed on was Prednisone. This was because at the time I couldn't afford Colcrys as it was no longer generic. Thank you a-hole drug companies and our government for that one. So the evil Prednisone... Or so it's called by most of us BD'ers. For me, Prednisone was the best medication ever! I actually felt normal. Yes, normal. I could work and felt great. Didn't cure me 100% but at least I was able to function. I could care less that I might develop diabetes or turn into a raging bitch while on it. Even if I would've sprouted wings and a moustache, I would've stayed on it. As long as I felt good, who cares?! A little less than 3 weeks into it, I developed severe tooth pain. The tooth pain had slowly gotten worse and by the time I made it to the dentist I was convinced I would need 3 root canals- no joke! I was prepared for at least 3 root canals that day. The dentist then proceeded to tell me there was nothing wrong with my teeth. Wait, what?! Nothing wrong. She told me to go off the Prednisone. Low and behold, my teeth got better almost immediately.
Now that the Prednisone was out, I was told by my rheumy at the time, the only other medication there was is the Colcrys. No! It's too expensive because there is no generic in the United States. I started looking into Canada. Thank god for Canada! I was going to order 3 months worth for $45, which is great since that was the cost to me with my insurance here in the States for 1 month! Seriously, how do they ever expect people to afford this shit? Especially when you're sick and are struggling to work and pay bills. The day I was going to order, my friend/coworker, Dr. Tara Doyle found a coupon for it for only $15 a month. I set forth to the pharmacy, coupon in hand, and determined. Started the medication, within a day I started getting this numbness/tingling/burning in my upper lips and teeth. I tried the Colcrys several times to make sure this was truly causing it. Same results every time. Seriously? Why is this happening to me? This was just the start of numerous medications I would try. Little did I know...
Many months had passed where I was without a rhuemy- 6 months to be exact. I was on no medication aside from pain pills and OTC stuff. I found my current rheumy, Dr. Grandits- thank god for her, who said of course there's other medications you can try! Huh? I was told by 2 other rheumy's there is no other meds for Behcet's. Dr. Grandits gave me a list of 14! Woot Woot!
We started with Plaquenil. I thought I'll take it at work in case I have a reaction. I had a reaction alright! It landed me right in the bathroom vomiting. I felt like complete crap the rest of the day/night. I couldn't even eat dinner. Needless to say, that was the end of that one.
Methotrexate was next on the list. This one landed me in the ER. I took it at night and started feeling icky, but was getting use to feeling icky when starting new meds. I woke up looking like I had a bad sunburn on the upper half of my body. Even warm to the touch like sunburn. As the day went on, I started getting pain in my kidney area and decreased urine output. I only went to the bathroom twice from 8 AM-1PM. So totally not normal for me and I had been chugging water like crazy. Finally decided I better go in to make sure I wasn't going into kidney failure. The doctor was more concerned with the redness than the kidneys, not me- I want my kidneys intact and working! Thankfully they ended up being fine and guess what he prescribed? A Prednisone taper. Ha ha! Yeah right. I've learned I can't take more than 10 mg in a week of Prednisone or I get tooth sensitivity. And yes, I tried doing Prednisone once a week to see if it would make a difference with my symptoms but it didn't and I can't go around feeling like I need root canals every day for the rest of my life. It was a miserable couple days waiting for the Methotrexate to pass out of my system.
Next was Arava. This is the most horrible medication out there in my opinion. I started getting nightmares. The kind of nightmares where I would wake up sweating, panting, and heart racing. Makes for a good horror movie or book but not something I care for on a daily basis. The worst part of this medication is it fucked with my memory. I wasn't sure if I was getting neuro-behcet's or if it was from the medication at the time. Now looking back I know it's from the medication. This was the medication I was on around Valentine's day. I had sent out cards to my family the week before and then again the week of Valentine's day. I have no recollection of sending them out the first time. None what-so-ever. Scary. There were also some other instances of me forgetting small things. Either way, never something you want to go through when you're only in your early 30's.
During the time of no rheumy, my primary doctor prescribed me Cymbalta for pain. I ended up getting a severe dry mouth with this. Nothing I did helped. I tried sucking on things- cough drops and candy- get your minds out of the gutter:) Tried drinking water, juice, etc. Nothing helped, so scratched that one off my list. This was another one of those lovely drugs that isn't covered by insurance. Thankfully on the manufacturer's website, there was a free 30 day trial.
Can also scratch off Gabapentin from the pain medication list too. I had tried this years ago for my pelvic adhesion/endometriosis. Even on the lowest possible dose, I couldn't handle it. I took it at night, almost fell over several times when needing to go to the bathroom. The worse part was trying to wake up from it the next day. I wouldn't fully come out of the medication hangover, as I like to call them, until 2 PM the following day. I tried this for about a week hoping my body would adjust to it. No such luck.
Then there's the most recent, Topamax. This was to be for the BD headaches. I took it at night, hoping it would help me sleep. Guess what? I'm one of the 3% who get insomnia from it. Awesome. Once again, I'm special. So I took it during the day hoping it would give me a little kick of energy since those of us with BD lack it. Maybe helped for a couple days. I was to increase the medication up as time went on. I had horrible stomach issues from it and it also affected my memory and thought process. By the third week, I had to sleep with a bucket by my bed from the intense nausea. Even my nausea medication, Compazine, didn't fully make it go away. I was so miserable by week 3 and at the time I wasn't sure what it was from- a bad flare up? the Topamax? the Imuran? After tinkering with my meds, I learned it was from the Topamax. Waiting to hear back from my neuro to see what the next step is. I believe it's going to be another medication. The fun never stops.
I am currently on Imuran and tolerating it. I can't do a full dose, but that's OK. I'll work my way up there. Crossing fingers it will work or make a difference. At least I haven't ended up in the ER or bathroom while on it. Yet...
I won't bother you with the other medications- antibiotics and birth controls that I've had a reaction to. My allergy/intolerance list is now at 11. I have no doubt this list will grow. I never thought I'd be one of "those" people. Either way, this has not stopped me from continuing to try other medications. My goal is to find something that makes me feel like the Prednisone did because what I wouldn't give to feel "normal" again.
Thursday, March 15, 2012
My Heart Breaks For My Behcet's Friends...
Today is one of those days that my heart is breaking for my Behcet's friends and family. Even though we are not blood related, they are my family. These people have a special place in my heart. Only another BD'er can understand what this horrible disease can do to your life.
What effect it has on your relationships. Your love life. Your children. Your friendships.
What effect it has on your mental state. Your emotional state. Your physical state.
Picture you going through life as you planned or not as planned- some people planned their careers, other have not. You may have started your career when this disease has hit you, you may have not, you may have been fifteen years into your career. Either way you are stopped dead in your tracks.
For me I was six years into my LPN nursing career. I was on my way to my RN and was eventually headed for my nurse practitioner in family practice. My only hope is a cure, remission, or finding medication that makes my symptoms disappear. None of the three likely to happen any time soon but I still keep a small ray of hope alive somewhere in me.
Now picture your significant other wondering what is going on with you. For some of us, we've been together many years, while other not so many. Think about what they see- they see you becoming a fraction of what you use to be. You can no longer go out and do things like before. There is no more going to do a walk along the beach, then a picnic, then a movie, then a dinner, and then a little oh-la-la! You have to pick one. Just one. If you're lucky you might be able to manage two. But with two there's definitely a price you'll pay.Then there's the sex issue. Sex itself will throw you into a flare up. Not to mention it will make your body feel like it's been beaten and bruised. You may be accused of cheating, your marriage in ruins. I am one of the lucky ones in this department. Don't get me wrong, it does throw me into a flare up, but we've learned to work around it. I say I'm lucky because I have never been accused of cheating or ever been on the verge of breaking up due to this horrible disease. I talk about this because people need to understand the toll this disease takes on people's marriage. It is a very real issue and not every man or woman is understanding. Supposidly sex and money are the top two thing couples fight about the most in relationships, now Behcet's is fuel to the fire. Can you imagine what that's like? I'll bet you're trying to, aren't you? :)
What about the people with children you ask? How do you think they feel? I can only give you an idea because I don't have kids myself. I know they feel terrible. But guess what? They SHOULDN'T!!! Nobody asks for this disease. Nobody. Kids are more understanding than we give them credit for. They will get it. Even if they don't now, they will when they are older. We do have Jason's 12 year old brother living with us. His name is Jacob. Mentally he's like a 10 year old. He's enough to handle and then some. He has way too much energy but what kid doesn't, right? Can't imagine what it's like having younger kids in the house and dealing with this disease. Or more than one kid. Kudos to those who do it! How do I handle it when Jacob ask me to do something and I feel like total poo? I just have to remind him I am sick and cannot do anything. Some days he really gets it and can be very caring, other days he's just a kid and doesn't understand. A lot of the times we do indoor activities. We have movie weekends. I'm getting him to be a movie junkie like me. I'm sure a lot of you know what I mean when I say that, right? Not much you can do about it other than wait for them to grow up and hope they really do understand.
Guilt of friendships and family outings. This is definitely one of the hardest for me, especially the family outings. Since I've gotten sick, I've missed some get-togethers with family and friends. Christmas Eve this last year at my grandmothers was particularly difficult for me to miss. Even if I wanted to go, I would've slept the whole time I was there. I looked like death that day. And that's an understatement. What kind of company would that have been? Not to mention it would've scared the shit out of my family. Most of them haven't seen me when I'm this bad. How do I handle this? I've learned to not let what people think about me get to me since getting sick. I have enough on my plate. People can either understand or they don't. If they can't understand, then they aren't good enough to be in my life from here on out. I find family seems to understand a lot better than friends. And if they are really my friends, then they can understand I can't make plans and can only do things spur of the moment. Or they can come visit me and I may not be able to get out of bed that day, but at least we can talk.
If it's not bad enough we have problems in every aspect of our lives once this disease hits, our health is put into the hands of medical professionals who sometimes have compassion and sometimes of those who don't. Most of them don't even know what the hell Behcet's is. I hate when I have to read stories about my fellow BD'ers being treated like drugs seekers. My heart just breaks for them. Do they think anyone wants something like this? Do they think anyone wants to wake up some day and say I want to feel like a 200 year old lady who was hit by a semi-truck, who can't feel her feet, who gets mouth ulcers, who gets migraines on a daily basis, who can't walk up stairs because of the pain, who gets genital ulcers, who gets numbness/tingling in her face that last for months, who wants to be on narcotics for the rest of her life? The correct answers health care providers is: NO! With that being said, I get that there are drug seekers out there. I deal with them at work. But you also need to understand that there are legit people out there that depend on this medication and without, we are FUCKED. Sometimes I wish that those who treat my fellow BD'ers like this would get this disease. Yea, I know, horrible, isn't it? Well, walk a mile in our shoes and maybe you'd see where we're coming from.
I wasn't sure if I should put this paragraph in but the more I think about the more I want to so people can understand what it can be like. At some point I will go into more detail with my provider struggles. Thankfully I have finally found a team of providers that is compassionate and willing to help me and work with me on medications and willing to give me a chance and the option to choose.
The first two rheumatologist told me there were no other medications to treat this disease other than prednisone and colcrys due to my reactions to these two medications. How wrong they were. I am so happy I found Dr. Grandits and she gave me the option to try other medications. A list of 14 in fact. It is my choice to try the medications even if I am sensitive to medications, it is still MY choice. Did you hear that Dr. Medina and Dr. Fazeli? My Choice. As for my pain, I thank God for Chris (full name will not be given for her privacy) and her understanding. She is a blessing in disguise. She is what every provider should be like. She listens and is there for her patients. She truly cares, which is a rare find in a provider. She works with me on my medications. And no, I will not give you her name or number. Sorry. My neurologist, Dr. Evans, I have seen only once but also seems to genuinely care. I hope that our relationship continues down the path my other provider relationships have because then I can say I really do have a wonderful team working with me to help conquer this horrible disease.
I'm finding it very hard to end this posting on a positive note because there are so many sorrows in this post. For many of us the struggle is long, hard, and life long. Eventually most of us find a good health care team, but a lot of us are still struggling even years after being diagnosed. Years pass, we meet more Behcet family and friends thanks to social media. Thankfully, it is this support along with the support of family, friends, significant others that make the moments more bearable.
"Never underestimate the pain of a person. In all honesty, everyone is struggling. Just some people are better at hiding it than others." Unknown
What effect it has on your relationships. Your love life. Your children. Your friendships.
What effect it has on your mental state. Your emotional state. Your physical state.
Picture you going through life as you planned or not as planned- some people planned their careers, other have not. You may have started your career when this disease has hit you, you may have not, you may have been fifteen years into your career. Either way you are stopped dead in your tracks.
For me I was six years into my LPN nursing career. I was on my way to my RN and was eventually headed for my nurse practitioner in family practice. My only hope is a cure, remission, or finding medication that makes my symptoms disappear. None of the three likely to happen any time soon but I still keep a small ray of hope alive somewhere in me.
Now picture your significant other wondering what is going on with you. For some of us, we've been together many years, while other not so many. Think about what they see- they see you becoming a fraction of what you use to be. You can no longer go out and do things like before. There is no more going to do a walk along the beach, then a picnic, then a movie, then a dinner, and then a little oh-la-la! You have to pick one. Just one. If you're lucky you might be able to manage two. But with two there's definitely a price you'll pay.Then there's the sex issue. Sex itself will throw you into a flare up. Not to mention it will make your body feel like it's been beaten and bruised. You may be accused of cheating, your marriage in ruins. I am one of the lucky ones in this department. Don't get me wrong, it does throw me into a flare up, but we've learned to work around it. I say I'm lucky because I have never been accused of cheating or ever been on the verge of breaking up due to this horrible disease. I talk about this because people need to understand the toll this disease takes on people's marriage. It is a very real issue and not every man or woman is understanding. Supposidly sex and money are the top two thing couples fight about the most in relationships, now Behcet's is fuel to the fire. Can you imagine what that's like? I'll bet you're trying to, aren't you? :)
What about the people with children you ask? How do you think they feel? I can only give you an idea because I don't have kids myself. I know they feel terrible. But guess what? They SHOULDN'T!!! Nobody asks for this disease. Nobody. Kids are more understanding than we give them credit for. They will get it. Even if they don't now, they will when they are older. We do have Jason's 12 year old brother living with us. His name is Jacob. Mentally he's like a 10 year old. He's enough to handle and then some. He has way too much energy but what kid doesn't, right? Can't imagine what it's like having younger kids in the house and dealing with this disease. Or more than one kid. Kudos to those who do it! How do I handle it when Jacob ask me to do something and I feel like total poo? I just have to remind him I am sick and cannot do anything. Some days he really gets it and can be very caring, other days he's just a kid and doesn't understand. A lot of the times we do indoor activities. We have movie weekends. I'm getting him to be a movie junkie like me. I'm sure a lot of you know what I mean when I say that, right? Not much you can do about it other than wait for them to grow up and hope they really do understand.
Guilt of friendships and family outings. This is definitely one of the hardest for me, especially the family outings. Since I've gotten sick, I've missed some get-togethers with family and friends. Christmas Eve this last year at my grandmothers was particularly difficult for me to miss. Even if I wanted to go, I would've slept the whole time I was there. I looked like death that day. And that's an understatement. What kind of company would that have been? Not to mention it would've scared the shit out of my family. Most of them haven't seen me when I'm this bad. How do I handle this? I've learned to not let what people think about me get to me since getting sick. I have enough on my plate. People can either understand or they don't. If they can't understand, then they aren't good enough to be in my life from here on out. I find family seems to understand a lot better than friends. And if they are really my friends, then they can understand I can't make plans and can only do things spur of the moment. Or they can come visit me and I may not be able to get out of bed that day, but at least we can talk.
If it's not bad enough we have problems in every aspect of our lives once this disease hits, our health is put into the hands of medical professionals who sometimes have compassion and sometimes of those who don't. Most of them don't even know what the hell Behcet's is. I hate when I have to read stories about my fellow BD'ers being treated like drugs seekers. My heart just breaks for them. Do they think anyone wants something like this? Do they think anyone wants to wake up some day and say I want to feel like a 200 year old lady who was hit by a semi-truck, who can't feel her feet, who gets mouth ulcers, who gets migraines on a daily basis, who can't walk up stairs because of the pain, who gets genital ulcers, who gets numbness/tingling in her face that last for months, who wants to be on narcotics for the rest of her life? The correct answers health care providers is: NO! With that being said, I get that there are drug seekers out there. I deal with them at work. But you also need to understand that there are legit people out there that depend on this medication and without, we are FUCKED. Sometimes I wish that those who treat my fellow BD'ers like this would get this disease. Yea, I know, horrible, isn't it? Well, walk a mile in our shoes and maybe you'd see where we're coming from.
I wasn't sure if I should put this paragraph in but the more I think about the more I want to so people can understand what it can be like. At some point I will go into more detail with my provider struggles. Thankfully I have finally found a team of providers that is compassionate and willing to help me and work with me on medications and willing to give me a chance and the option to choose.
The first two rheumatologist told me there were no other medications to treat this disease other than prednisone and colcrys due to my reactions to these two medications. How wrong they were. I am so happy I found Dr. Grandits and she gave me the option to try other medications. A list of 14 in fact. It is my choice to try the medications even if I am sensitive to medications, it is still MY choice. Did you hear that Dr. Medina and Dr. Fazeli? My Choice. As for my pain, I thank God for Chris (full name will not be given for her privacy) and her understanding. She is a blessing in disguise. She is what every provider should be like. She listens and is there for her patients. She truly cares, which is a rare find in a provider. She works with me on my medications. And no, I will not give you her name or number. Sorry. My neurologist, Dr. Evans, I have seen only once but also seems to genuinely care. I hope that our relationship continues down the path my other provider relationships have because then I can say I really do have a wonderful team working with me to help conquer this horrible disease.
I'm finding it very hard to end this posting on a positive note because there are so many sorrows in this post. For many of us the struggle is long, hard, and life long. Eventually most of us find a good health care team, but a lot of us are still struggling even years after being diagnosed. Years pass, we meet more Behcet family and friends thanks to social media. Thankfully, it is this support along with the support of family, friends, significant others that make the moments more bearable.
"Never underestimate the pain of a person. In all honesty, everyone is struggling. Just some people are better at hiding it than others." Unknown
Thursday, March 8, 2012
The Million Dollar Question...
Someone recently asked me what is feels like to have Behcet's. What she specifically wanted to know is what does the pain feel like on a daily basis.
This is the million dollar question, isn't it my Behcet friends?
First, you need to understand that everyone tolerates pain differently. Pain to one person doesn't mean pain to another. One woman might be able to give birth without medication while another may need an epidural or more. One man may be able to handle a sprained ankle without medication while another may not. Some cultures embrace pain. Others do not. Some people even give and get pain during sex. Wait...what?! Ya heard me. Gender, Culture, Race, Religion, emotional state and many more factors all play a role in how pain affects you. Don't believe me? Do some research...
Every day I have pain. Yes, every single day since getting sick in February of 2011. The question is if the day is going to be a day of minimal pain, medium pain, or severe pain. I've pretty much learned to classify it as those three categories. It makes it much easier to explain to others.
Here's a list of general symptoms/problems I have on a daily basis. Please keep in mind this list can change on a daily basis-see my February Magical Bag of Behcet's Theory to better understand:
knee pain
finger pain
finger swelling
finger stiffening
ankle pain
ankle swelling
hip pain
hip burning
eye pain
eye burning
eye redness
light sensitivity
feet numbness
cold feet
occipital headaches with occasional temporal headaches
fatigue that varies from little to severe
How else can I explain what it's like to others? When I walk my legs feel heavy. It's like I have weights tied to them but I don't. You know the feeling you get when you work out and have used areas of your body you haven't in years and the feeling you get the day after? The sore feeling? Well, imagine that but times it by 100. That is the feeling I have every single day all day long. My body feels like it's been beaten and bruised by a baseball bat in it's muscles and bones. Then there are the severe days when it feels like I've been hit by a semi-truck. I'm not even going to describe this because it's exactly like I said, a semi-truck. You figure it out.
Now for most of us we are lucky enough to have found doctors who are compassionate enough to understand that we are truly in pain and need pain medication. However, there are some of us who have yet to find a caring and understanding enough doctor and have been pushed around, treated like a drug seeker, treated like there is nothing wrong with us, are being beaten down, and are trying to find a doctor and care team who can help us.
I beg of you for those who are reading this, if you know someone who has a chronic disease or chronic pain, please try to understand where that person is coming from. Don't be so quick to judge because it just might be you some day in their shoes and what will you do?
I chose the quote below because I think there are a lot of good people in the world but we often hear more about the bad ones. I also think that we often lose touch with how we treat others at times because we are so engrossed on what is going on in our own lives. Would it kill us to be more kind to others? I feel we as humans have lost that basic human kindness that was once so popular. The simple hello's, thank you's, opening doors, etc.
"The capacity to give one's attention to a sufferer is a very rare and difficult thing; it is almost a miracle; it is a miracle. Nearly all those who think they have the capacity do not possess it." Simone Weil
This is the million dollar question, isn't it my Behcet friends?
First, you need to understand that everyone tolerates pain differently. Pain to one person doesn't mean pain to another. One woman might be able to give birth without medication while another may need an epidural or more. One man may be able to handle a sprained ankle without medication while another may not. Some cultures embrace pain. Others do not. Some people even give and get pain during sex. Wait...what?! Ya heard me. Gender, Culture, Race, Religion, emotional state and many more factors all play a role in how pain affects you. Don't believe me? Do some research...
Every day I have pain. Yes, every single day since getting sick in February of 2011. The question is if the day is going to be a day of minimal pain, medium pain, or severe pain. I've pretty much learned to classify it as those three categories. It makes it much easier to explain to others.
Here's a list of general symptoms/problems I have on a daily basis. Please keep in mind this list can change on a daily basis-see my February Magical Bag of Behcet's Theory to better understand:
knee pain
finger pain
finger swelling
finger stiffening
ankle pain
ankle swelling
hip pain
hip burning
eye pain
eye burning
eye redness
light sensitivity
feet numbness
cold feet
occipital headaches with occasional temporal headaches
fatigue that varies from little to severe
How else can I explain what it's like to others? When I walk my legs feel heavy. It's like I have weights tied to them but I don't. You know the feeling you get when you work out and have used areas of your body you haven't in years and the feeling you get the day after? The sore feeling? Well, imagine that but times it by 100. That is the feeling I have every single day all day long. My body feels like it's been beaten and bruised by a baseball bat in it's muscles and bones. Then there are the severe days when it feels like I've been hit by a semi-truck. I'm not even going to describe this because it's exactly like I said, a semi-truck. You figure it out.
Now for most of us we are lucky enough to have found doctors who are compassionate enough to understand that we are truly in pain and need pain medication. However, there are some of us who have yet to find a caring and understanding enough doctor and have been pushed around, treated like a drug seeker, treated like there is nothing wrong with us, are being beaten down, and are trying to find a doctor and care team who can help us.
I beg of you for those who are reading this, if you know someone who has a chronic disease or chronic pain, please try to understand where that person is coming from. Don't be so quick to judge because it just might be you some day in their shoes and what will you do?
I chose the quote below because I think there are a lot of good people in the world but we often hear more about the bad ones. I also think that we often lose touch with how we treat others at times because we are so engrossed on what is going on in our own lives. Would it kill us to be more kind to others? I feel we as humans have lost that basic human kindness that was once so popular. The simple hello's, thank you's, opening doors, etc.
"The capacity to give one's attention to a sufferer is a very rare and difficult thing; it is almost a miracle; it is a miracle. Nearly all those who think they have the capacity do not possess it." Simone Weil
Tuesday, March 6, 2012
The Emotional Turmoil
Emotional: pertaining to or involving emotion or the emotions
Turmoil: a state of great commotion, confusion, or disturbance; tumult; agitation; disquiet: mental turmoil caused by difficult decisions
No one can prepare you for what a chronic disease is going to do to you physically, let alone emotionally. There are some days you have a handle on it. In fact, most days I do have a wonderful handle on it. I would say 97 % of my days.
Then there are days like today where I want to crawl into a hole and hide. Just thinking about what's going on brings tears to my eyes. Just the mention of my story brings tears to my eyes. Trying to tell my story to my friend Marie at work today I got teary eyed.Why? This I cannot tell you. Each day is different for me. Maybe because my pain was more unbearable today than it ever has been since I've been sick. It's amazing what pain can do to your body and mind.
Do I feel depressed? Absolutely not. I love my life. I love being me. Regardless of what stresses I have. Even with this stupid disease I still love my life.
I've never been one to cry. Never. The whole 9 years Jason and I have been together he's seen me cry a total of 3 times. Does this make me a stronger person? I don't think so. I'm just not someone who cries. I think either you are or you aren't. Nothing wrong with being either one.
I've decided my body and mind are in emotional turmoil with their self, hence the title for today.
I have no doubt as time goes I will have to be on medication for depression as most people with chronic illnesses/pain are. I have yet to meet someone with chronic illnesses/pain who is not on depression medication. Should anyone be ashamed of this? Absolutely not! It's hard enough going through life as it is but imagine getting thrown a chronic illness/pain. I don't want to say depression is expected with a chronic illnesses/pain, but I think it is at some point.
Maybe I am wrong.
I shouldn't assume.
Anyways, for the time being my tears will be my medication.
"Every tear should live its purpose. Don't ever wipe the reason away."Jessica Simpson
Turmoil: a state of great commotion, confusion, or disturbance; tumult; agitation; disquiet: mental turmoil caused by difficult decisions
No one can prepare you for what a chronic disease is going to do to you physically, let alone emotionally. There are some days you have a handle on it. In fact, most days I do have a wonderful handle on it. I would say 97 % of my days.
Then there are days like today where I want to crawl into a hole and hide. Just thinking about what's going on brings tears to my eyes. Just the mention of my story brings tears to my eyes. Trying to tell my story to my friend Marie at work today I got teary eyed.Why? This I cannot tell you. Each day is different for me. Maybe because my pain was more unbearable today than it ever has been since I've been sick. It's amazing what pain can do to your body and mind.
Do I feel depressed? Absolutely not. I love my life. I love being me. Regardless of what stresses I have. Even with this stupid disease I still love my life.
I've never been one to cry. Never. The whole 9 years Jason and I have been together he's seen me cry a total of 3 times. Does this make me a stronger person? I don't think so. I'm just not someone who cries. I think either you are or you aren't. Nothing wrong with being either one.
I've decided my body and mind are in emotional turmoil with their self, hence the title for today.
I have no doubt as time goes I will have to be on medication for depression as most people with chronic illnesses/pain are. I have yet to meet someone with chronic illnesses/pain who is not on depression medication. Should anyone be ashamed of this? Absolutely not! It's hard enough going through life as it is but imagine getting thrown a chronic illness/pain. I don't want to say depression is expected with a chronic illnesses/pain, but I think it is at some point.
Maybe I am wrong.
I shouldn't assume.
Anyways, for the time being my tears will be my medication.
"Every tear should live its purpose. Don't ever wipe the reason away."Jessica Simpson
Sunday, March 4, 2012
Ready For Bed...But Wait It's Only 6 PM!
Damn straight I'm ready for bed:) Posting this, then kicking back, probably gonna watch some cheesy 80's movie (because I'm a sucker for them) and fall asleep before it's anywhere close to being finished.
Yesterday I made it through my sister's baby shower- yay! Even made it through a short trip Target afterwards with my mother-in-law! (barely)What's that you say? How am I doing? Glad you asked...
Horrible...once again, with every action you do with this disease there is a reaction. A price you pay. I've spent most of the day in bed and am now ready for bed 5 hours earlier than normal. Was it worth it. Definitely this time.
My symptoms for the day have been aches all over- like the stretching every area of your body even though you haven't. Numbness/tingling in my face. Occipital migraines. Finger joint and knee pain.Toes and feet are cold, can't feel them a lot of the time.
And my favorite symptom of the day... are you ready for this?
Inflammation of the blood vessels in my mouth.
Bet you can't guess what this feels like? Let me tell you. I woke up thinking dang it, I have mouth ulcers starting again. Looked in my mouth and thankfully no ulcers. Sometimes I think those are less painful than the inflammation. This type of inflammation even makes your teeth painful at times. There's no real describing this other than imagine having mouth ulcers lining the bottom of your teeth on one side. Mine happens to be one sided today so that's how I explain it.
The other downfall to this is everything tastes funny. And yes, it makes it difficult to eat. You can either try to eat or don't. Some days are worse than others. I chewed on my right side today:) I've decided to post pics as well. Let me tell you, it's not that easy taking pics of your mouth. We did the best we could.
I'm using lidocaine jelly to help numb the area. My friend Anita has recommended Oral Analgesic Gel from the Dollar Tree. Sounds like a good reason to go shopping!
Good Night!
"Sleep is the best medication."
Yesterday I made it through my sister's baby shower- yay! Even made it through a short trip Target afterwards with my mother-in-law! (barely)What's that you say? How am I doing? Glad you asked...
Horrible...once again, with every action you do with this disease there is a reaction. A price you pay. I've spent most of the day in bed and am now ready for bed 5 hours earlier than normal. Was it worth it. Definitely this time.
My symptoms for the day have been aches all over- like the stretching every area of your body even though you haven't. Numbness/tingling in my face. Occipital migraines. Finger joint and knee pain.Toes and feet are cold, can't feel them a lot of the time.
And my favorite symptom of the day... are you ready for this?
Inflammation of the blood vessels in my mouth.
Bet you can't guess what this feels like? Let me tell you. I woke up thinking dang it, I have mouth ulcers starting again. Looked in my mouth and thankfully no ulcers. Sometimes I think those are less painful than the inflammation. This type of inflammation even makes your teeth painful at times. There's no real describing this other than imagine having mouth ulcers lining the bottom of your teeth on one side. Mine happens to be one sided today so that's how I explain it.
The other downfall to this is everything tastes funny. And yes, it makes it difficult to eat. You can either try to eat or don't. Some days are worse than others. I chewed on my right side today:) I've decided to post pics as well. Let me tell you, it's not that easy taking pics of your mouth. We did the best we could.
I'm using lidocaine jelly to help numb the area. My friend Anita has recommended Oral Analgesic Gel from the Dollar Tree. Sounds like a good reason to go shopping!
Good Night!
"Sleep is the best medication."
Friday, March 2, 2012
The Cost Of Over Doing It...
Today is short and bitter sweet. The title speaks for itself for those who have Behcet's.
I went to work yesterday, despite my body telling me to take it easy. I didn't listen. I wanted out of the house after being housebound for way too long!
Boy did I feel the consequences today. I woke up with a throbbing occipital migraine. Called in to work. Laid back down. Woke up 4 hours later with migraine gone but severe body aches in my knees, hips, hands, and ribs. This is the kind of pain that makes it hard to move. It feels like you've been working out or stretching every part of your body but the weird thing is you haven't been. I couldn't even bend my knees. Now, how do you think going to the bathroom was? Not so easy...
My other favorite symptom of the day? Eye floaters...
I haven't had these friends visit me for a very long time. In fact, many months. I would say at least 3 months and I don't miss them. Not long after they came to visit me my vision decided to turn blurry. Needless to say my day was not very fun.
I did however take a 4 hour nap and this was after sleeping 12 hours last night. A bit much you think? Not nearly enough when you are so fatigued from this disease. I knew the risk of working yesterday and what it might bring today. The thing about this disease is you never quite know what it's going to bring each day. One day I might be OK to work the next day. Then there are days like today. Then there are days that are 100 times worse than today.
Whatever the risks, those of us with Behcet's sometimes take them knowing we will pay the cost of over doing it just to say we had a normal day in our lives every once in a great while.
I went to work yesterday, despite my body telling me to take it easy. I didn't listen. I wanted out of the house after being housebound for way too long!
Boy did I feel the consequences today. I woke up with a throbbing occipital migraine. Called in to work. Laid back down. Woke up 4 hours later with migraine gone but severe body aches in my knees, hips, hands, and ribs. This is the kind of pain that makes it hard to move. It feels like you've been working out or stretching every part of your body but the weird thing is you haven't been. I couldn't even bend my knees. Now, how do you think going to the bathroom was? Not so easy...
My other favorite symptom of the day? Eye floaters...
I haven't had these friends visit me for a very long time. In fact, many months. I would say at least 3 months and I don't miss them. Not long after they came to visit me my vision decided to turn blurry. Needless to say my day was not very fun.
I did however take a 4 hour nap and this was after sleeping 12 hours last night. A bit much you think? Not nearly enough when you are so fatigued from this disease. I knew the risk of working yesterday and what it might bring today. The thing about this disease is you never quite know what it's going to bring each day. One day I might be OK to work the next day. Then there are days like today. Then there are days that are 100 times worse than today.
Whatever the risks, those of us with Behcet's sometimes take them knowing we will pay the cost of over doing it just to say we had a normal day in our lives every once in a great while.
Thursday, March 1, 2012
To work or not to work, that is the question...
Today was my first day back at work since 2/17/12. Let me tell you it felt damn good to get out of the house! My title for today is a bit sarcastic because it's not that those of us with Behcet's don't want to work because we DO! It's that our symptoms are so severe and debilitating at times that it is physically impossible for us to work. Sometimes even mentally.
Let me make it easy for you to understand: If you knew I was a nurse (which I am) but was having severe joint pain in my fingers and was unable to hold my arms up that day due to fatigue and pain, would you want me giving you an injection into your arm? If you knew I had to crawl to the bathroom that day because my body was too weak to walk, would you want me trying to take care of you? Would you want me to try to drive to work? Would you want us to try to focus on helping patients when we cannot even help ourselves? When we are crying in bed due to pain? When mentally we are not capable of thinking of anything but the pain because it's so severe no matter how hard we try? Please try to picture what we go through and understand this is probably the most difficult choice for most of us to make- the decision to stop working. Sometimes it is made for us.
Still don't understand? Picture you're the one who's sick and you are at work.The days you make it to work you try to function normally. But the problem with this is you are never fully functioning since getting sick because you always have some symptoms that bother you. It could be two symptoms or it could be ten but you never know because they are constantly changing. Your possibilities are endless. Sounds like a line for winning the lottery, huh? Only it's the lottery of Behcet's symptoms. The day goes on and you are still in pain, fatigued, maybe a mouth ulcer or a genital ulcer for the day, but you're trying to make it through the day. Some days you make it, some days you have to leave early because it gets too much to take. Remember, these people see you when you are doing somewhat ok, not when you are having a full on flare up. Think about what the people around you are thinking. The people around you see you and think "she or he doesn't look sick". This makes you feel one hundred times worse. Why? Because you are already struggling with emotions of a life long illness that has no cure and there are no tests saying "you have Behcet's disease". No, you see it's all based on symptoms and ruling everything else out. Some doctors have even treated you like you are making your symptoms up. Yes, you've had several doctors think you're symptoms aren't that bad. Dr. Fazeli at University of Minnesota's first words to me were "I didn't know who was the patient because you don't look sick". Never words you want to hear from a doctor. Shame on you Dr. Fazeli. You think I'm being pessimistic and down about people. Wrong. Let me tell you what I've heard people say about people with Fibromyalgia (yes I've actually heard people say this at a clinic I worked at):
"It can't be that bad." "She's probably just faking it so she can get out of work." "Some doctors don't even believe that's a real disease." How do you think they feel about Behcet's then? Especially since they haven't heard about it until you mentioned it to them?
Still don't understand? Then honestly, may you get this horrible disease so you do understand. I have even wished this disease on doctors so they can understand what it's like and I am not that kind of person. Maybe I seem bitter but maybe you would understand better if you were in the shoes of someone dealing with Behcet's.
It has become an agonizing decision for me. Imagine being a type A person, someone who's use to being on the go, having everything perfect- a clean house, a clean car, etc. Well as clean as my car gets because I may slack on that one a bit :) And then being thrown a rare autoimmune disease that drops you on your butt where most days it's a struggle to even get out of bed.
Imagine what that does to someone who's use to being on the go...to all of a sudden be stuck in bed or house bound. To all of a sudden being happy if you can clean the toilet that week.
It's a hard pill to swallow and I thank my fellow Behcet girls for that line :) See when I first got sick I thought ok, I can handle this. I can make this work. All in moderation. Work, come home and sleep. If I do nothing else than work, I can do this. I only work 4 days a week so I will still have my 3 days off. I'll still miss a couple days here and there but I can do this. This was NOT reality. Not even close. Nobody told me the more I work, the more it would throw my body into fatigue and a flare up of symptoms. And not just small symptoms. The symptom of a semi-truck hit your body. Yes, I'm serious. Nobody told me my symptoms would worsen as time went on. Maybe they didn't know that. Nobody told me I would have to eventually quit working or at least cut back on my hours. Maybe they didn't know this as well.
I've had chronic headaches and my fingers have gotten worse pain-wise lately. For all of those wondering if I'm still working on the floor as a nurse, no worries, I'm on phones taking messages. The worst thing about phones is my fingers get painful and I have to take breaks at times. Even typing this, I've had to stop several times. I think it's about time I get that voice recognition software, huh? I have now had to cut back on my hours and applied for disability. I am so not looking forward to the fight for disability. I'm told it will take years and I will need a lawyer. It's bad enough dealing with this horrible disease. I just hope I have enough fight left in me. Those with BD will know what I'm talking about.
I leave you with my lovely quote for the night:
"To work or not to work, Behcet's is the decider."
Let me make it easy for you to understand: If you knew I was a nurse (which I am) but was having severe joint pain in my fingers and was unable to hold my arms up that day due to fatigue and pain, would you want me giving you an injection into your arm? If you knew I had to crawl to the bathroom that day because my body was too weak to walk, would you want me trying to take care of you? Would you want me to try to drive to work? Would you want us to try to focus on helping patients when we cannot even help ourselves? When we are crying in bed due to pain? When mentally we are not capable of thinking of anything but the pain because it's so severe no matter how hard we try? Please try to picture what we go through and understand this is probably the most difficult choice for most of us to make- the decision to stop working. Sometimes it is made for us.
Still don't understand? Picture you're the one who's sick and you are at work.The days you make it to work you try to function normally. But the problem with this is you are never fully functioning since getting sick because you always have some symptoms that bother you. It could be two symptoms or it could be ten but you never know because they are constantly changing. Your possibilities are endless. Sounds like a line for winning the lottery, huh? Only it's the lottery of Behcet's symptoms. The day goes on and you are still in pain, fatigued, maybe a mouth ulcer or a genital ulcer for the day, but you're trying to make it through the day. Some days you make it, some days you have to leave early because it gets too much to take. Remember, these people see you when you are doing somewhat ok, not when you are having a full on flare up. Think about what the people around you are thinking. The people around you see you and think "she or he doesn't look sick". This makes you feel one hundred times worse. Why? Because you are already struggling with emotions of a life long illness that has no cure and there are no tests saying "you have Behcet's disease". No, you see it's all based on symptoms and ruling everything else out. Some doctors have even treated you like you are making your symptoms up. Yes, you've had several doctors think you're symptoms aren't that bad. Dr. Fazeli at University of Minnesota's first words to me were "I didn't know who was the patient because you don't look sick". Never words you want to hear from a doctor. Shame on you Dr. Fazeli. You think I'm being pessimistic and down about people. Wrong. Let me tell you what I've heard people say about people with Fibromyalgia (yes I've actually heard people say this at a clinic I worked at):
"It can't be that bad." "She's probably just faking it so she can get out of work." "Some doctors don't even believe that's a real disease." How do you think they feel about Behcet's then? Especially since they haven't heard about it until you mentioned it to them?
Still don't understand? Then honestly, may you get this horrible disease so you do understand. I have even wished this disease on doctors so they can understand what it's like and I am not that kind of person. Maybe I seem bitter but maybe you would understand better if you were in the shoes of someone dealing with Behcet's.
It has become an agonizing decision for me. Imagine being a type A person, someone who's use to being on the go, having everything perfect- a clean house, a clean car, etc. Well as clean as my car gets because I may slack on that one a bit :) And then being thrown a rare autoimmune disease that drops you on your butt where most days it's a struggle to even get out of bed.
Imagine what that does to someone who's use to being on the go...to all of a sudden be stuck in bed or house bound. To all of a sudden being happy if you can clean the toilet that week.
It's a hard pill to swallow and I thank my fellow Behcet girls for that line :) See when I first got sick I thought ok, I can handle this. I can make this work. All in moderation. Work, come home and sleep. If I do nothing else than work, I can do this. I only work 4 days a week so I will still have my 3 days off. I'll still miss a couple days here and there but I can do this. This was NOT reality. Not even close. Nobody told me the more I work, the more it would throw my body into fatigue and a flare up of symptoms. And not just small symptoms. The symptom of a semi-truck hit your body. Yes, I'm serious. Nobody told me my symptoms would worsen as time went on. Maybe they didn't know that. Nobody told me I would have to eventually quit working or at least cut back on my hours. Maybe they didn't know this as well.
I've had chronic headaches and my fingers have gotten worse pain-wise lately. For all of those wondering if I'm still working on the floor as a nurse, no worries, I'm on phones taking messages. The worst thing about phones is my fingers get painful and I have to take breaks at times. Even typing this, I've had to stop several times. I think it's about time I get that voice recognition software, huh? I have now had to cut back on my hours and applied for disability. I am so not looking forward to the fight for disability. I'm told it will take years and I will need a lawyer. It's bad enough dealing with this horrible disease. I just hope I have enough fight left in me. Those with BD will know what I'm talking about.
I leave you with my lovely quote for the night:
"To work or not to work, Behcet's is the decider."
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