Wednesday, January 16, 2013

One of those posts where I try to explain why I haven't been around

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!

A friend of mine with chronic health problems of her own posted this and I love it

24 comments:

  1. I'm so sorry to hear of all you've endured. It must be incredibly frustrating to be that sick and unable to do the things you want and need to do. I really hope that this diagnosis is the first step towards management and towards getting your life back. I really miss your funny. I hope it returns soon, right behind your health. Feel better.

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  2. WOW, so sorry to hear about what you've been going through. Glad you think you have finally got a diagnosis. Let's pray the doctors can help. I look forward to having you back, I know you'll be documenting your journey because thats what's good writers do.

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  3. best wishes of a great doctor with an even better treatment plan to take away so much of your suffering and frustration.

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  4. My name is Alison. I'm 24 and have suffered from Bechet's since my early teens. I've had 10 surgeries and more doctor's visits than I can count! My best advice to you would be to find a doctor who truly listens to you, so that you two can *discuss* your illness (instead of him coming in, reading off your blood counts, and telling you what to do). I have found and amazing group of doctors who have saved my life, but I still try to self-educate as much as I can. I have a blog (rockingthisillness.wordpress.com), please do not hesitate to email me if you ever have questions - it's a lot to manage! I hope this flare passes quickly for you!

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  5. Aw, pumpkin! I'm so sorry that you're going through all this hideous. Being sick sucks a giant can of ass. Lean on your family and friends - and when all else fails hit the blog circuit for a few laughs to help you through. Sending virtual hugs. xoxoxo

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  6. I am so sorry friend, please know I am here if you need to vent, cry or just talk.
    Hugs.

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  7. Wow! I had no idea what you are going through. And here I've been all mopey over having influenza in the house. Don't ever be afraid to let us know in the blogging world how you are feeling-we are all here for you! *hugs*

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  8. I'm so sorry that you're hurting. I hope that you find a specialist who can help alleviate the pain. xo

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  9. I've never heard of bechet's before ): I hope you find some relief soon!

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  10. Hey, really sorry about this! You should not feel guilty about taking care of yourself! Of course, hubby will do the laundry! :) Please do take rest and I hope there is some medicine which can be prescribed which will give you some relief!

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  11. That sucks, I mean just sucks. I'm sending good vibes so you can find a good doc and keep that disease under control. Keep resting, my friend...

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  12. That's awful! I wish we lived closer:( Much love & prayers- you know you can email me anytime!!

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  13. So sorry to hear this! Please know we're all thinking about you and hoping you can get some relief from this!

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  14. Putting in a healling prayer for you I am glad your Dr. took you seriously. I get mouth sores from onions the yellow & white ones so I feel your mouth pain to a small degree. Hang in there and I would love to copy that quote it fits my life right now so perfectly, if it is ok to use it for future post let me know :]
    I am on round 2 of radiation and some people just don't get it this post says it! Take Care

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  15. Hang in there, Lady! I hope the specialist can give you some help on what to do to keep these flare ups at a minimum. I'll be thinking about you and hoping for this episiode to be over quickly.

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  16. Oh, no. I'm so sorry to hear what you've been through! Please keep all of us posted on how you're doing (when you feel up to it)!

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  17. Oh no. I'm so sorry to hear what you've been going through! Please keep us updated on how you're doing (when you feel up to it)!

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  18. So sorry to hear what you are going through! I totally understand. I have Lupus and have had had it for 14 years now. Many of your symptoms sound like Lupus - especially the mouth sores. Have they done a Lupus panel on you? I will be praying for you.

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  19. Just like ya to go find a rare disease to get!
    No, I kid...I hope you start feeling better soon. That sound extremely painful and I'm so sorry you have to go through it. My thoughts are with you and I hope you find some relief soon. Hang in there....you got this!

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  20. I am new here but am so glad I was referred to your page by a friend of yours. I will be sending healing vibes your way. XOXO Nicole

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  21. I'm just now finding you (courtesy of Baking in a Tornado)and I'm sending you prayers and well wishes! Take care!

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  22. Sending hugs, smiles, and lots of good juju your way!

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  23. OMG! I haven't been "around" myself and didn't know! I just found out through Karen (Baking in a Tornado)! What a friend she is! I'm sending you all my love and I'll keep you in my prayers! I wish you feel better soon!!!

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  24. I came here via Karen and was interested in what sort of autoimmune condition you were suffering from. I hope that you find help within the medical system and am thinking of you. I've never shared this on my blog, but I suffer from a host of autoimmune conditions too..hashimoto's disease, atrophic gastritis and most recently tested positive for rheumatoid arthritis. I can't thank you enough for sharing your insight and struggle with Behcet's. I haved suffered from chronic canker soars inside my mouth and nose for the past four months --my endo is testing me for Lupus once I recover from the flu...yet you have made me think about exploring something else. Thank you so so much for sharing. Wishing you all the best.

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