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...

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 20^th 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:

http://livingwithbehcets.blogspot.com/2012/02/magical-grab-bag-of-behcets.html

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

 

This one's for Peggers (Peggy)

A while back I lost a close Behcet's friend. Her name is Peggy. My nickname for her is Peggers. This entire post is dedicated to her.
It's always difficult to come up with something to say when you lose someone you care for. There's the loss of words, the shock, the anger, the why did this happen, the this is such bullshit, etc.
This is what I typed up for the general public to see. What I can't discuss is the fun stuff we use to talk about, the secrets we shared, the naughtiness and mayhem we caused, and the other good stuff. Below is what I typed up. I cannot express how much she is missed. I imagine she's shaking her head at me for even typing this up, but this is for you Peggers whether you like it or not! Neener neener!

I’ve been thinking of how to write this and it isn’t easy (so ignore spelling/typos)…the world lost a wonderful woman, mother, friend, Behcet’s warrior, wife, and so much more. Her name is Peggy Barney. I met her in a larger Behcet’s group, which lead to a small group of girls who came to call ourselves Behcet’s Bitches (you know who you girls are :) ) Over the years we have grown close, laughed and cried together, shared secrets and many stories from our lives, argued (in a good way of course, most of the time, ha ha), supported each other when no one else understood what we were going through with our disease, and of course, caused a bit of shenanigans (gasp!). Peggy was more than a friend to us- she was our sister, our mother, our family. She was well-versed in every topic and would make grown men cry (not really, but she debated like a beast- for those who are not up on current lingo, that’s a good thing). I remember we often talked about how we might be related or at least should be because we are so much alike. You could talk about anything with her and she would listen. Sometimes we’d just vent about stuff together and I can’t say I enjoyed it with anyone more than her. To say she’s going to be missed is a gross understatement. We love you Peggy!


This is where I leave the post. Hug those you love, make those memories, cherish each day, and blah, blah, blah (yeah Peggers/George I know I'm rambling- inside info that I cannot share in case you're wondering)... 

If you would like to read on my Peggers, here is the info. 

http://www.hathawayfunerals.com/obits/obituaries.php/obitID/701783/obit/Margaret-F-%E2%80%9CPeggy%E2%80%9D-%28Glenn%29-Barney


~ These represent Peggy and her passions (of course there are more, but I'd need a whole new post if I was to list them all) ~



"When you sell a man a book you don't sell him just 12 ounces of paper and ink and glue - you sell him a whole new life.” Christopher Morley

 

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