Tuesday, May 10, 2016

What does Behcet's mean...

A while back someone asked what does Behcet's mean to me. Well...it means a lot of things. I went back to elementary school thinking, or maybe it was middle school, and decided to spell out good old Behcet's and came up with some of what it means to me. Of course there are a gazillion more I could add but I have to stop somewhere right? If you don't understand some of these, take a minute and think, and maybe you just won't get it because it's something that's different for each of us.

What does Behcet's mean to me?

B- Boo, bitch, bad-ass body of mine, breaking, busted up, banged up, bandage, behaving badly, broken, beginning, bored, borrowed time, before, being, better, born, beast, brain fart, blood vessels, bedside manner

E- everlasting, evolving, eternal, empty, educational, eerie, error, experience, expect, emotional, emergency, energy, enough, ending, enraged, evil, eyes, explaining, expanding, exhausting

H- heat, how to use your body, hunger, headache, hope, horizon, Hulusi Behcet, hindrance, handicap, hole, how, hell, hard, ha ha, harsh, healthy, heart, horrible, hazard, help

C- control, cold, cunt, center, creative, craziness, can't, can, colorful, conflict, courage, communication, curious, compared, community, confused, concussion, cells


T- taming the beast, theatrical, theories, tempting, taboo, talented, trapped, twisted, tarnished, trigger, thoughtful, thinking, total annihilation, terror, trust, temperature, treat the patient and not the textbook, travels, Too legit....Too legit to quit (go on and sing the song, you know you want to)

S- stupid, silly, sucker, sun no more, stinging, stolen, stranger, shock, shame, silence, story, still, symptoms, system, snickers (not the candy), science, silk road, sores, stoppable

I recently listened to a Podcast called The Guilty Feminist where they addressed nudity. Something discussed was body flaws- or that we are told they are flaws when they really aren't (good ol' society's thinking of how we should be). This started me thinking about how to relate this to Behcet's. Is Behcet's a flaw? Is it something we are born with and has been with us all along? Would thinking that Behcet's isn't a flaw make us better accept this disease and what it does to us and those around us? Would the acceptance phase be easier? Just something to think about...

"If you don't like something, change it. If you can't change it, change your attitude." ~ Maya Angelou

Monday, December 21, 2015

What are you thankful for?

With the holiday season here, I thought it'd be nice to have an uplifting post. It's easy to complain, how easy is it to do the opposite? I guess it depends on you.

What am I thankful for? (not in any specific order of course)

The ability to smile
My family
My cats and dogs (unless the dogs are farting...)
Living in the country
Quiet time
My Nieces
To have a cabin we can go to and get away
The sun
A summer breeze
The frost on the trees
To look out the living room window and watch the neighbors horses prancing around
Hearing Sandhill cranes in the summer
A comfortable van (that I can stretch my legs in)
The Pageant of Hope (those girls are inspiring!)
My doctors (they actually care about their patients)
The stars at night
The Golden Girls (that show always makes me laugh)
The thrift store in Princeton-Thrift with a Twist (they actually help people unlike other stores plagued with controversy)
The ability of being able to research my family history (thank you those who kept such great records)
My good days when symptoms are at a minimum
My kindle to read on (doesn't hurt my hands like books do, but dang do I miss the smell of a real book!)
The tree leaves in Autumn when they change color
Fuzzy socks
Hot baths in Epsom salt
Heated blankets
And all the other things I'm forgetting...

With that being said, I hope everyone is enjoying the time you have with your loved ones this holiday season. Go make some good memories!

Memories of the past make for great stories in the future.”~ C. L. Gunderson (me!)

Tuesday, November 3, 2015

I didn't ask to be sick...

I didn't ask to be sick…

I didn't ask for
- to be bed-bound many days
- to know I'm going to die earlier than I should
- to have complications with damn near every health situations that comes up
- to have ongoing, ever-changing, and at times life-threatening symptoms, every day for the rest of my life (unless by some miracle we find a cure)
- my life to be turned upside down by a stupid, fucking disease
- the life of those around me to turned upside down by this stupid, fucking disease

I didn't ask for
- needing to use a wheel chair or walker the majority of times when I go out
- needing to use handicap parking (because I never know how I will feel when I am done or how far I'm able to walk that day)
- to use the scooter in stores
- others to stare at me because to them I look like a healthy 36 year old (well maybe I look a little younger some days)
- to look like a zombie when walking and some days actually look like one

I didn't ask for
- hip injections because my hips get inflamed regardless of PT and other medicines I have tried
- the need to do PT twice a week for hips and post-concussion symptoms (which we all know it's impossible with a chronic illness- even once a week is damn near impossible)
- the need for occipital injections every 3 months to keep the occipital neuralgia at bay (or I can't turn my head and have severe headaches)

I didn't ask for
- my fingers to not work right when I desperately need them to
- my hands to drop items (glasses of milk are always a fun one)
- my brain to not comprehend simple things some days
- to have to ask others to repeat what they've told me despite their irritations in needing to do so
- my body to reject my ever growing list of medications I can't tolerate
- pain that is a constant
- the ongoing pleurisy issues (that I know will land me in the ER some day again but for something other than to diagnose it)

I didn't ask for
- the emotional toll it takes on myself and those close to me
- or those who my S.O. works with (I often wonder if it's something people are more aware of and sympathetic to, like cancer, how it would be)
- others who are sick coming around me or my S.O., and then getting me sick (it happens every time, in fact I can't recall a time it didn't- even with me/my S.O. using precautions to keep it away)

I didn't ask for
- the other things that come along with autoimmune disease
* Fibro
*all the shit I'm missing because the list is too long

I didn't ask for
- the concussion I got on June 1,2015
- the post-concussion symptoms I'm still dealing with and very well may have the rest of my life
- the falls I continue to have after the concussion
- the inability to drive due to weakness or my post-concussion symptoms (would it be better if I drove myself and put others and myself in danger?)

I didn't ask for
- the emergency doctors visits in-between my regularly scheduled doctor visits
- I didn't ask for my body to not be able to fight off infection, where a normal person's body fights for them, not against them
- I didn't ask the infection to set in within days, where a normal person will have weeks or just get better

I didn't ask for
- the dental complications
- the sinus complications
- the GI complications
- the skin complications
- the eye complications
- the neurology complications
- all the other complications I have missed

I didn't ask for
- the advice others give that is generally a crock of shit despite their good intentions (especially those who have no idea what my disease is but in the next 10 minutes or the next time I see them, they have become experts- did you go to med school for that? I'm pretty sure everyone would be jumping on that train instead of going to medical school for years and years.)
- my family to not take my illness seriously (will they when I'm in the hospital finally from something they've caused or thought wasn't a big deal?) Krystle, thank you for understanding why I can't be around sickness, even if it's just a cold.
- the several horrible doctors I saw before I found a team who actually cares and wants to help
- the help I need getting to and from appointments
- the help I need for daily ADL's

I do ask for but didn't get
- others to be understanding but I know in reality they will never get it until they deal with it themselves or a close loved one goes through it

I didn't ask for life to be fair, we all know it's not.

I didn't want to say this but others force me to…
I didn't ask to be sick, in fact...
Nobody asks to be sick...

To help understand the kind of mood I'm in, please see below...

Monday, August 17, 2015

Oh the humidity...

Human Barbie, human Ken, meh not impressed, how about a weather person who can accurately tell the weather. The Human Weather Station coming to you live from _______(insert your city here).

It's the hot time of year (hot August nights...Neil Diamond song starting now-FYI he puts on an awesome show- the best I've seen, no joke) and with the weather changes comes fun times with the body of a Behcetie. That's my new word for us in case you are wondering. Similar to a machete because Behcet's slices our bodies into something it shouldn't. Or if you prefer a less gruesome analogy, think of Behcet's like your new best friend, your bestie. The humidity has made my body feel swollen and painful. Hurts to walk because my ankles feel like they've been broken and put back together. Finger swelling, check mate. Which, by the way, is making this fun to type up (thankful for the finger swipe on kindle).

Some days, who am I kidding, most days I feel like I should be in the circus for the shit my body does. I'm guessing most of you feel the same  way. How many of you can make your eyes  see pretty little black dots that look like birds? Or make your tongue look like a map? Or get the lovely occipital pain where you can't turn your neck because it feels like you have a piece of metal stuck in your neck making it unable to move? Bruising like I've used myself as a bowling ball is always a fun parlor trick. Let's not forget the purdy skin rashes and other oddities that could easily be a page long if I was to yap about it all. If only we weren't so special...

Here's something that will hopefully give you all a laugh. Our chocolate lab has a flatulence issue at times. As I'm writing this he plops down beside me and let's one rip. Now this is better than the usual following him up the stairs while he farts with every step. The joys of dog ownership.

"Never kick a fresh turd on a hot day." ~unknown

Thursday, August 13, 2015

Let's talk about stress baby...(Salt-N-Pepa style)

Let's talk about stress shall we?

Stress, we all have it to some extent. How about you?

What does stress do to Behcet's? Simple. One word: Flare. And it ain't purdy. In fact, stress is a bitch. But so are those damn flare ups.

How does it feel to be stress free? Is there such a thing? I think so (but what do I know). To me it feels like there is no weight being placed on your body or mind. It's being able to smile, be happy, a state of content. (Que post-modern psychology discussion here)

How about the different types of stress: emotional, physical, money, short term, long term, etc. (I'm sure somewhere out there someone's wanting to argue there's not different kinds, so to that person- go fuck yourself, this is my blog.) What's one of my least favorites that never goes away? Health stress. This is the stress related to Behcet's and Behcet's alone for me. I find myself asking how am I going to get past this flare and am ever going to feel back to my normal crappy (you know what I'm talking about)- this is about the time I'm cursing this disease and everything that goes along with it. It's the why can't I just have a normal body...Why is my body so damn awesome it needs to attack itself...why why why, that's always the question- usually followed with fuck,fuck,fuck...

Another favorite: the stress of others. Are you one of those people who try to help others and get bit in the butt over and over? I like to think people are generally nice and want to help others, but the reality is a lot of people are out there for themselves. I see it more often than not but it doesn't stop me from knowing there are others who really want to make a difference. Of course this whole topic can spin off into many questions- such as are we raising selfish assholes? But perhaps it's best we don't go down that road today.

Social media stress. Yeah, it's real. A couple months ago I decided to get rid of Facebook. There are good things about it, but bad things as well. It's been one of the best decisions I've made recently. I have no plans of going back. Of course I miss some things but it's nice to be free. Anyone who's ever quit Facebook knows what I'm talking about. I will say the support groups are a good thing to have even if you get in a spat with someone occasionally. You just need to pick the right support group and you will probably go through several before you find a decent one.

Kick those stressors out of your life, even if it's family and friends. In the end, it's just not worth it. You have one life, unless you believe in reincarnation, so why piss it away? I'm sure you're asking how do I do this? How do you cut out those you've been close to or lived with all your life? Simple. You will get to that point where you say "I'm done, I'm ready to live my life for me and not them anymore." And then you begin your life.

And for those saying everyone going's through something try to understand. That is true but it doesn't mean you have to take their shit year after year. My S.O. and myself have made some major changes to our lives regarding his family. I won't go into details because then I wouldn't be any better than those passing judgement on us for our actions (there are those in the family who chose to paint us as the bad people instead of dealing with the truth- I guess it's easier that way, right?), so to them I say step into our shoes, open your house up, and then judge away. Do we regret any of the decisions we've made regarding his family? No because it helped his younger brother get out of abuse. Little known fact: I had one of his family members apologize to me as she didn't believe what we said/what we've dealt with until she seen it first hand. So what's the big change we're making you ask? We are living our lives for ourselves for the first time in many many years and it feels wonderful!

I'll leave it with this: do what you love, enjoy your life, and quit spinning in the hamster wheel of stress.

P.S. If you have written an email to me and I didn't write back, I apologize. I try to answer emails even if it's months later. I hope to soon write back those I haven't.

"Before I never understood how people can cut family out of their lives. But after the last couple years, I'm finally beginning to understand and am ready to do it." ~ from someone close to me

"Life is what you make it. Always has been, always will be." ~ Eleanor Roosevelt

"You can see the change in you. I've never seen you so happy. Before it was meh/fake smiles, now you're really smiling." ~ Paraphrasing what a friend said to me lately. 

I could so never work in a bubble wrap factory...

Wednesday, May 20, 2015

Today is Behcet's Awareness Day, are you aware?

Today is Behcet's Awareness Day. Guess what? May is Behcet's Awareness month! Now you know, so what are you doing to raise awareness? I've been getting around to something I've been thinking about doing for years. Yes, years. I like to play the procrastination game. It's something I've gotten good at since being sick. Almost expert level now :)

Below is a little awareness game for social media. It's kind of like the cancer awareness you've probably seen floating around. There's two parts to it. I decided to keep it PG this year but next year, all niceness is off- it's gonna be rated R or worse (is there worse than rated R? Fucking rated R?)

Anyways, here's the first part: Make a sentence and post it to your status. Whoever comments or likes it, you send part two to their inbox. Or send a message to friends that they've been selected and have them post this as their status. Either way works, either way brings awareness and that's what we need. Since I have BD brain, if it doesn't make sense, make it sound good. This is my first time doing this so I'm no expert, just trying to raise awareness.

Birth month: 
January- I lost my car keys
February- I made coffee from scratch
March- I was driving
April- I clicked my heels together three times
May- I made whoopee
June- I won a convertible
July- I had a shotgun wedding
August- I planted flowers
September- I fell down the stairs
October- I farted
November- I laughed so hard
December- I was pulled over for speeding

Day you were born:
1-While fraternizing with Dax Riggs
2- while playing chess
3- while in the mountains of Tennessee
4- while whistling “Sittin On The Dock Of The Bay”
5-  while crying over “Ain’t No Sunshine”
6- while drinking 15 glasses of wine
7- while brushing my hair 100 times
8- while doing 100 pushups
9- while hitting my butt and flatulating
10- while frolicking around in my underwear
11- while playing soccer
12- while howling like a wolf
13- while watching Tank Girl
14- while barking like a dog
15- while watching the rain fall
16- while counting to 3,130
17- while listening to Sublime
18- while picking my nose
19- while singing loudly in the car
20- while scratching my butt
21- while  debating over if the toilet paper roll goes up or down
22- while debating over if the chicken or egg came first
23- while taking a selfie on a toilet
24-while scratching my butt
25-while removing a snuggie
26-while rowing a boat to Hawaii
27- while traveling to Wabasha, MN
28- while visiting Minneapolis Institute of Arts
29-while fishing for walleyes
30- while cutting my toenails
31-while eating seaweed

Color of shirt you are wearing:
Gray- and peed my pants from laughing so hard
Blue- and hit a pterodactyl with my car
White- and creating shenanigans
Pink- and hitchhiking to Antarctica
Black- and streaking during a bar mitzvah
Brown- and moonwalking on my deck railing
Purple- and wearing my sunglasses at night
Yellow- and lying in bed with Batman and Robin
Red- And eating apple pie
Orange- and drinking a martini with Jonny Depp
Green- and carrying moonshine for my grandma
Silver- and then I found five dollars
Multi-Colored- and ate a 12 piece of chicken all by myself

The second part: 

Guess what? Tag, you’re it! It’s your turn to play the Behcet’s awareness game. Why? Read below.
The month of May is Behcet’s awareness month. May 20th is Behcet’s awareness day. What is Behcet’s Disease you ask? A rare autoimmune disease with no cure. There are an estimated 16,000-20,000 of us in the USA with this special disease. It involves blood vessels of all sizes throughout our body. Our only hope is for remission or to find medications (usually for Lupus, RA, or chemo) to help manage symptoms because there is no specific medication for this disease. Most doctors have no idea what Behcet’s even is! Yes you read this correctly! So we have to educate them. Most of us go years without being properly diagnosed- let alone being treated properly with medications. Due to the majority of doctors not having a clue, we are often treated like we have mental illness, are making it up, or are drug seekers. No one should ever be treated like this. It can and does trigger other autoimmune diseases.   
Symptoms range daily from: Joint pain, nerve pain, nervous system involvement, headaches, occipital neuralgia, fevers, GI ulcers, mouth ulcers, genital ulcers, fatigue like a semi-truck has hit you, bone pain, eye problems- we can go blind and many other eye issues, mouth pain, teeth and gum problems, rashes, blood clots, and many more!
Every day is different for us - if you see me doing things one day, I may be in bed the next, then up again the day after, or in bed for a week. It truly is unpredictable! And just because you see me out of bed one day, that does not mean I feel well, it just means I was lucky to get out of bed. Most of us look normal, hence why it is called an invisible illness. Usually only our immediate family see us looking like death. Some of us have gained weight from the medications (thank you prednisone- we have a love/hate relationship with you!), so just because we look normal but may be overweight, does not mean we are lazy, our bodies are going crazy on the inside!
Emergency room visits are common for us. We maybe be going in for stroke symptoms only to find out it’s a new type of headache with stroke-like symptoms. Guess what? You still have to go because it really could be a stroke! Apply this to most of our symptoms and it just gets to be overwhelming.
Most of us have had to stop working to due this disease. Stopped dead in our life tracks- no work, no school, etc. Imagine your life being turned completely upside down. Imagine this disease taking a toll on every area of your life- every area.
Everything we do comes with a cost...the more we do, the more pain/symptoms result. Sounds like fun, huh? Because there are so many issues with invisible illnesses and handicap parking, I feel the need to speak on it. I may feel decent when I start shopping in a store, but I could easily not make it out. When you see someone who looks healthy parking in a handicap parking spot with their permit, do not assume they are healthy (it’s called an invisible illness for a reason). This disease is difficult enough to live with without people saying “you don’t look sick” or “you’re not handicap”. Don’t assume and don’t judge because this may be you some day.
Want to read more what living with Behcet’s Disease is like? Check out the Magical Grab Bag of Behcet’s at:

So have fun. I hope this helps to raise awareness. Hope you are as pain-free as possible on this Behcet's Awareness Day!