This is one of those lovely little posts where I explain why I haven't been posting. Do you really care? Probably not, but since I love my readers and I feel like a giant hairy butt crack for disappearing, I figured I owed you guys an explanation. It's probably way too personal and too much information, but I feel like it's silly to hold it in because really it's nothing I did wrong. It's just something crappy that happened to me and I know there are millions of people out there struggling with chronic illness, just like myself.
That said it's no secret my health sucks. I've posted about my IC (Interstitial Cystitis) before. I wish I could say that IC was the only thing i'm dealing with, but it's not. I've been pretty much bed ridden this past week and not with the typical crapola that everyone else is dealing with. I wish it was as simple as the flu, or a cold. Trust me I would love me some bronchitis right about now! I have always suffered with mouth ulcers (canker sores). Not just any old canker sores. I'm talking sores so big and painful I can't eat or sleep for days, sometimes weeks, and I get them all over the inside of my mouth and even inside of my throat. I started getting them when I was 5 and I always have an ulcer. My outbreaks vary in severity but they are always there. Sometimes I only have a few, other times (like this recent outbreak), they have pretty much destroyed my life with the pain and severity. They are not contagious at all, but they sure do hurt like hell. Again, these are not your typical canker sores. I've done everything I can to try and prevent them. I found an SLS free toothpaste, I cut out acidic foods, I have tried every kind of home remedy and vitamin treatment out there with absolutely no results. Aside from the mouth sores, i've been in pain. Mind bending freaking pain. All over body pain that feels like I ran 10 miles or have the flu. It's a very deep pain, all over my entire body that is hard to describe. Ibuprofen doesn't touch it. And then there's the fatigue that's so bad I can't get out of bed sometimes.
Now that I have built this post up all dramatic and you're probably at home eating a donut and reading this and yelling at your computer screen "Hurry up and just SPILL it lady", I went to my doc to talk to him about my suspicion of having a disease called Behcet's. It's an extremely rare autoimmune disorder, but also a type of vasculitis. It was first brought to my attention by an urgent care doc last spring when I went to urgent care because my right eye was throbbing and he noticed my mouth ulcers and said, "You know there is an autoimmune disorder that causes both eye problems and mouth sores, right?" I did not know that, but I went home and used Dr. Google and about fell out of my chair when I read about Behcet's. I ran into the living room and started reading the symptoms off to my hubby who at first was reading something on his iphone and only pretending to listen to me, but after a few seconds was like "Wait, what did you just say? Read that last part again." Even my hubby who is a true skeptic was convinced I had Behcet's. You're probably wondering why I didn't go to the doctor to be diagnosed last spring, but I have 5 kids and life got in the way. Plus when you have lived in chronic, daily pain for 30 some years, you just kind of get used to it. Sad, but true. In my defense, I actually did try to make an appointment with the only Behcet's specialist I could find online, but he doesn't see new patients without a physician's referral, so I put it on the back burner.
Then these past two weeks happened and i've been dealing with painful, hideous ulcers all over the inside of my mouth and throat (please don't try to Google them. You will seriously regret it), I went to my doctor on Monday. I was half expecting him to roll his eyes and tell me I was looney tunes to suggest I had such a rare disease (Behcet's was featured on TLC's Mystery Diagnosis), but he immediately started nodding his head and then spent about 20 minutes digging through my chart. He seemed to be very deep in thought and was just reading through my chart and writing things down. My IC, IBS, fibro, chronic gastritis, skin problems such as daily hives, migraines, blurry vision, eye pain, vertigo, etc, they are all connected. After an unusually lengthy appointment, my doc agreed that it does appear I have Behcet's. I'm going to be referred to a rheumatologist once he can find one who even knows anything about Behcet's. Behcet's is so rare that not many specialists are familiar with it. There are only about 15,000 people in the United States who have Behcet's. Lucky, lucky me. I have so many mixed feelings about my diagnosis from relief to having that confirmation that i'm not crazy, to sadness that this is something that's not going to just go away because it's a doozy of a disease.
My doctor gave me some pain meds and those have been helping me sleep, but I still feel like poop. I'm so tired that I haven't touched my computer in a few days. I have barely touched my iphone. Every little bit of my strength and energy is being used up taking care of the kids. My hubby has been awesome throughout all of this. He hasn't said a word about the fact that he has no clean laundry for work and that he will probably have to use a hand towel to dry off with after his shower. He's actually doing laundry for me tonight because he's really a saint in disguise.
I don't know when this flare will pass and when i'll feel human again. Sadly there is no cure for Behcet's, but hopefully I can get seen by a good specialist and find a treatment plan that helps me live a somewhat normal life. I need to rest. I have to rest. It's not a choice anymore, it's a necessity. I love you all and when I think of something really funny I promise i'll be back to post about it, soon!
That said it's no secret my health sucks. I've posted about my IC (Interstitial Cystitis) before. I wish I could say that IC was the only thing i'm dealing with, but it's not. I've been pretty much bed ridden this past week and not with the typical crapola that everyone else is dealing with. I wish it was as simple as the flu, or a cold. Trust me I would love me some bronchitis right about now! I have always suffered with mouth ulcers (canker sores). Not just any old canker sores. I'm talking sores so big and painful I can't eat or sleep for days, sometimes weeks, and I get them all over the inside of my mouth and even inside of my throat. I started getting them when I was 5 and I always have an ulcer. My outbreaks vary in severity but they are always there. Sometimes I only have a few, other times (like this recent outbreak), they have pretty much destroyed my life with the pain and severity. They are not contagious at all, but they sure do hurt like hell. Again, these are not your typical canker sores. I've done everything I can to try and prevent them. I found an SLS free toothpaste, I cut out acidic foods, I have tried every kind of home remedy and vitamin treatment out there with absolutely no results. Aside from the mouth sores, i've been in pain. Mind bending freaking pain. All over body pain that feels like I ran 10 miles or have the flu. It's a very deep pain, all over my entire body that is hard to describe. Ibuprofen doesn't touch it. And then there's the fatigue that's so bad I can't get out of bed sometimes.
Now that I have built this post up all dramatic and you're probably at home eating a donut and reading this and yelling at your computer screen "Hurry up and just SPILL it lady", I went to my doc to talk to him about my suspicion of having a disease called Behcet's. It's an extremely rare autoimmune disorder, but also a type of vasculitis. It was first brought to my attention by an urgent care doc last spring when I went to urgent care because my right eye was throbbing and he noticed my mouth ulcers and said, "You know there is an autoimmune disorder that causes both eye problems and mouth sores, right?" I did not know that, but I went home and used Dr. Google and about fell out of my chair when I read about Behcet's. I ran into the living room and started reading the symptoms off to my hubby who at first was reading something on his iphone and only pretending to listen to me, but after a few seconds was like "Wait, what did you just say? Read that last part again." Even my hubby who is a true skeptic was convinced I had Behcet's. You're probably wondering why I didn't go to the doctor to be diagnosed last spring, but I have 5 kids and life got in the way. Plus when you have lived in chronic, daily pain for 30 some years, you just kind of get used to it. Sad, but true. In my defense, I actually did try to make an appointment with the only Behcet's specialist I could find online, but he doesn't see new patients without a physician's referral, so I put it on the back burner.
Then these past two weeks happened and i've been dealing with painful, hideous ulcers all over the inside of my mouth and throat (please don't try to Google them. You will seriously regret it), I went to my doctor on Monday. I was half expecting him to roll his eyes and tell me I was looney tunes to suggest I had such a rare disease (Behcet's was featured on TLC's Mystery Diagnosis), but he immediately started nodding his head and then spent about 20 minutes digging through my chart. He seemed to be very deep in thought and was just reading through my chart and writing things down. My IC, IBS, fibro, chronic gastritis, skin problems such as daily hives, migraines, blurry vision, eye pain, vertigo, etc, they are all connected. After an unusually lengthy appointment, my doc agreed that it does appear I have Behcet's. I'm going to be referred to a rheumatologist once he can find one who even knows anything about Behcet's. Behcet's is so rare that not many specialists are familiar with it. There are only about 15,000 people in the United States who have Behcet's. Lucky, lucky me. I have so many mixed feelings about my diagnosis from relief to having that confirmation that i'm not crazy, to sadness that this is something that's not going to just go away because it's a doozy of a disease.
My doctor gave me some pain meds and those have been helping me sleep, but I still feel like poop. I'm so tired that I haven't touched my computer in a few days. I have barely touched my iphone. Every little bit of my strength and energy is being used up taking care of the kids. My hubby has been awesome throughout all of this. He hasn't said a word about the fact that he has no clean laundry for work and that he will probably have to use a hand towel to dry off with after his shower. He's actually doing laundry for me tonight because he's really a saint in disguise.
I don't know when this flare will pass and when i'll feel human again. Sadly there is no cure for Behcet's, but hopefully I can get seen by a good specialist and find a treatment plan that helps me live a somewhat normal life. I need to rest. I have to rest. It's not a choice anymore, it's a necessity. I love you all and when I think of something really funny I promise i'll be back to post about it, soon!
A friend of mine with chronic health problems of her own posted this and I love it
