Better not knowing or knowing? That is the question...

Someone recently asked me (recently meaning months ago and I just haven't gotten around to writing about it) if it was worse not knowing what was wrong with me (no smart comments on that one, ha ha) or now having a name to my symptoms.

At first I responded that before it was more difficult because I remember how scared I was not knowing what was wrong. You know something is wrong because it affected every area of my life- every area on a daily basis. How do you put a name on something that doctors aren't sure of? The gazillion tests they run, all normal except CRP and Sed Rate. You feel like shit, a million thoughts running through your mind of what it could possibly be, the Googling your symptoms (yes I was one of those people even though I disliked the people who came into the clinic telling me what they had because they Googled it), the overall just not knowing...

It wasn't even the simple not knowing like What's for dinner tonight? What's your next project going to be? It was the How much longer do you have to live? Is my body going to shit out before we find out what's wrong? What are my loved ones going to do without me?

Then I pondered over the question and decided it was a trick question because to me, the answer is both are bad.

Once you get your diagnosis, you're happy it's finally been given. What no one prepares you for is the fact that it's still going to affect your life in every possible way, usually worse than before due to new symptoms. (At least in my life it has) Yes, there are those lucky enough to continue working, find a combo of meds that work or at least make their life somewhat livable. Then there are those of us who try meds without success, are bed bound many days, have new symptoms spring up, etc. - I could go on and on and frickin' on... Someone (you know who you are ;) ) recently explained it as a hamster wheel and that really sums it up well. You are in and out of the ER, doctors visits, etc.- it's a never ending cycle that's destined to repeat itself with you as the star hamster.

So yeah, tricky question...

Today I have the pleasure of seeing a vascular specialist at Abbott Hospital in Minneapolis. This is probably long overdue. For the past month I've been having left arm pain that came out of nowhere and ranges from a dull ache in the entire arm to straight out painful throbbing. After an ER visit, a normal doctor visit, they have ruled out a blood clot or muscle issue. The last doctor I saw said it's probably something vascular related to my Behcet's- he was stumped as he's never had someone with this quite this issue. Imagine that, my body stumping another doctor. Freak of nature my good ol' body is. Thank you body of mine ;)

With that, I'm off.

UPDATE: The vascular doctor I saw was very nice, knew about Behcet's- he's from Turkey. Long story short, I'm in for more testing most likely- he says it's either neuropathy or something related to the Behcet's because it responded to prednisone, either way it's to neurology or my rheumy and if they can't figure it out I will be asking for a referral to the Mayo clinic. I don't think I ever spoke about my experience with the Mayo. When I first got sick after two shitty rheumatologists I thought perhaps if I went to the Mayo they would know what's going on- they are the best right? My PCP referred me but they just don't accept you, they enter your symptoms into a computer and you have to see what department they recommend first and they will refer you on to the correct department once they rule out everything. I wasn't as sick at first and had limited symptoms so they suggested I see infectious disease first. I had just had 12 tubes of blood drawn plus the gazillion other tests so I was not happy with their answer. Plus at this point my first rheumatologist had said it was atypical Behcet's. I decided not to follow through because it is a far drive for me and I just didn't want to be a guinea pig anymore. My friend says the Mayo is really awesome and they were super nice when I went to visit her, so hoping my experience this time around (if it comes to that) will be much better. Most days however, I just wish my body would behave and fix itself instead of attack itself. 

And because I just love this one...

 “Better never means better for everyone... It always means worse, for some.” ~ Margaret Atwood


Ha, ran across this one too. 

"Yes, life could be better. But it could also be worse. Don’t believe me? Allow me introduce you to my mother-in-law.
” ~ Jarod Kintz

The Beasts Within...

Hello and happy spring! Or kind of spring where I am- we have been having frost warnings. Awesome, huh? All some of us want to do is to garden! Or attempt to garden :) Anyways, here's a little something I wrote one day not too long ago. Read it and take a guess what it's about...

The Beasts Within

The beasts within

Fight me everyday

They do not care

If it’s day or night

The taking of my body is what they so desire

The giving in of my mind and my entire empire

If I believed in sin, this would be them.

Their marks come on hard, rough

Their only goal is to take me down.

My only goal?

To not let the beasts win

My body being ripped in two

If others only knew

The feelings flood over me

Fever, the burning, the throbbing, the chills

Unable to walk, unable to talk

As they tear and claw their way to the top

The question always is

Who will win? Me or them?

As I watch the scene unfold,

I scream and it remains to be seen…

Well? If you guessed it's about werewolves then you're correct! Haha, I lied, it's about shape shifters. Not quite, I lied again. It is however about my lovely Behcet's & Fibro fighting inside my body to see which one will take over. Lately it's been strictly the Behcet's. Love those night sweats, mouth ulcers, extreme fatigue, and fevers. I just can't seem to get enough of those symptoms lately. And don't forget it's rainy season so swelling ahoy! How many of you get nightmares with the fevers? It seems mine always go hand in hand. Good times. I keep hoping my energy will make a come back but apparently it's on strike. Hope everyone is enjoying their spring and may you be as pain free as possible, full of energy, and full of happiness and other crap :)

"To forget how to dig the earth and to tend the soil is to forget ourselves." ~Mahatma Gandhi

"Weather means more when you have a garden. There's nothing like listening to a shower and thinking how it is soaking in around your green beans." ~Marcelene Cox

Can you tell I miss gardening by the quotes? :)

 

The Down Days...

This particular post is very personal. I'm sharing something I wrote on a very down day. I've been going back and forth on whether to share this or not and ultimately decided yes for many reasons. Before I post it, I have several things I need to say.

1) Everyone has bad days, some days are worse than others. Do they hang around? Usually not. For me, I try to think tomorrow will be better and it usually is. Some days it is just impossible to stay positive no matter what and this is why I am sharing this.

2) I am not suicidal. If you think that and are going to try to lecture me, please quit reading my blog. I do not want people commenting saying "you need help" "go see a doctor" etc. Some people write down their feelings instead of keeping them inside. This is what I do. The fact that I'm sharing this with you, well...you should feel fucking privileged. If you don't write down your feelings, consider doing that. It helps for so many reasons.

3) With this being said, if you are more down than usual, fit the symptoms of depression, please do yourself and your loved ones a favor and seek help. Here is a number to a suicide hot line if you need: 1-800-273-8255 (USA). If it's international, here is a link to numbers that can help: http://www.suicide.org/international-suicide-hotlines.html  
You're on the Internet already, make the effort to click and get help. Remember someone out there loves you, more than you will ever realize. Someone out there will miss when you are gone.

Now that my spiel is over, here is my writing from a while back.

The fight I have no more,

The will to go on is too much some days

The energy and will has been drained out of me,

I lay here in silence waiting for it to come back,

Sometimes it never does…

My eyes are tinged with red, tears fallen down

Until there’s nothing left to fall…

The anger I feel at myself, at the others,

Those who assume my life can be normal again.

Those who think I can go out and go on,

Those are the ones I wish I could just trade places with

So they can see what it’s like, feel what it’s like,

Know the pain, fatigue, to have no hope left...
The daily problems, oh how they kick you when you are down
How sick I am of fighting...of just being
The times come and go when I loathe myself...

The days the warrior leaves me are the worst.

The most tragic, the most hurtful…

There is no winning, only losing.

Losing what’s left of my fight, my sanity…

The warrior within has been defeated and lost all hope.

The darkest days are here. 

Today I happen to be having a positive day so it's difficult to read through this and post it (not sure why my poem has spaces between some of the lines and some lines are together, but I guess this is what was meant to happen because it looks fine on the draft, perhaps it's more dramatic?). I feel like I should be upbeat with this post but that was not what this post is intended to do. It is intended to show that no matter how great life can be, we all have those bad days. Know you are not alone. (Que Michael Jackson's "You are not alone" song, which will now be stuck in my head the rest of the night...and likely all day tomorrow)

And for those struggling today, here's a little something for you:

 And one I just can't help but post. Anyone with a cat understands...

  "May your days get better. May your suffering end. May the sun shine once again." ~ Chrissy

Things You Should Never Say To A Behcet's Patient...

So I had quite an experience about a week ago. Let me tell you what fun I had...

My friend and I went to get something from someone off Craigslist. She's driving because I really don't drive much anymore due to fatigue (plus I really don't want to get murdered alone if that was to happen- crazy ass people out there). I mention this because it plays into my story. We get to this lady's house, gorgeous neighborhood and house, go inside to purchase our items. The lady says to my friend "It sure is nice of you to drive her". I make a comment about how I don't drive much due to my autoimmune disease on the phone so she knew I was bringing someone along. The lady then goes on a spiel, and I mean spiel about how I  would get better if I eat right and think positive because it's all in my head. Yes, she actually said this to me! And she was serious! She doesn't know me or even what my disease is, yet she has become an expert in Behcet's Disease. Let me give you an idea about how crazy this lady was- she began telling us about how she goes to a veterinarian for her health problems because he has helped her better than anyone else has. Personally I think maybe she is taking too much horse tranquilizers...We get to the car and my friend says I was waiting for you to clock her one. Did I do it? Nope. Did I think about it? Yep. Am I a violent person? Nope, but occasionally I envision bitch slapping people like this and some people in general but that's another story.

So with this story being told, I actually started this post way too long ago, like June of 2013. Oops, a little behind!  I hope you enjoy it and learn from it.

There are some things you should never say to a person with Behcet's Disease. Actually to anyone with an autoimmune disease for that matter. Are you aware of what they are? I'm guessing not, so let me educate you. And for those of you smart enough to keep your mouth shut, good job :)

First and foremost, never, ever, EVER say "You don't look sick." Every day we are suffering, the problem is you do not see us suffering as you cannot see/feel what's happening inside our bodies. I can try to explain it as I have before but nothing I say will do it justice for what it is truly like living with this disease. Something that also goes with this is "You look good." I realize most people think they are being nice by saying this, however, once again, you cannot understand what is going on inside of us. Just because I throw on a little make up, tie my hair back, etc. does NOT mean I feel good. It means I was lucky enough to be able to get out of bed today. If you ever have a doctor tell you something along the lines of "you don't look sick"- RUN! and run fast!

Another one of my favorites is "If you eat right, take vitamins, and exercise, it will get better or go away." Hmmm, let's think about this. So my body is going to magically quit attacking itself? My blood vessels are going to start behaving themselves? Well damn, maybe I should've just put them in the corner for a time out. Um, yea, do you realize how stupid this sounds? If you really knew how this disease worked, you would know that exercise or an activity, even something like walking up the stairs, a doctor appointment, or swimming, can throw our bodies into a flare up. Not every time, but 95% or so of the time (based on my experiences). Of course, every person with BD is at a different stage in the disease and if affects everyone differently. Why? Because Behcet's is just that special...Now I do think there is something to eating healthy, very specifically gluten free. I've had numerous people tell me they have gotten some relief, not a lot, but some from being gluten free. It's worth a try, right? I remember something someone close to me said when I first got sick- "If you go to the gym you'll feel better because that's what happened to me" (this person did not have Behcet's but because they felt better after going to the gym this would magically cure me of course). This was very hurtful because it told me they really have no clue what's going on with me. Then it was the uphill battle to get them to understand why it doesn't work this way. It's the worst when it comes from those closest to us. I actually know people who have lost a lot of weight since getting sick because their doctor's thought it would help. Did it? Nope, in fact these people told me they actually got worse. Once again, everyone is different with how it affects us. Some treatments work for others while it may not work for you. I personally prefer alternative treatments to modern medicine- acupuncture, biofeedback, herbs, etc. as they have helped me more than modern medicine.


If you feel the need to comment or say something, ask how we are doing, but be prepared for honesty. Sometimes we might decide to say good, or fine, just to not talk about it. Chances are the person you are talking to is suffering but doesn't want to burden you with their feelings. Better yet, just give us a hug. But not too tight as it hurts more than you think. Imagine hugging someone with broken ribs- you're not gonna bear hug them, right? :)


Of course I've missed some, probably many, but will add as I remember. I'd like to thank my new Behcet's friends for getting my arse moving again on the blog. If they didn't come around, it'd probably be another year before I write! ha ha :)

I remember the days before getting sick when I was on top of everything (perhaps another blog post coming on that thought)...

 “Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around." ~ Leo F. Buscaglia

And because I'm feeling a bit snarky, here's one of my favs of the day: