15. April 2010 by Bex.

I saw a top ten list on Facebook of things not to say to someone who has Fibromyalgia.  One of them included the title for this blog.  It’s true: I can’t tell you how many people have told me I look healthy, I don’t look sick, etc.  I’d like to take it as a compliment.  Yes, thank you!  I struggle everyday but at least I LOOK good!  But it’s not a compliment; it’s insulting.  You don’t have to have festering sores popping puss all over the place or be using a cane or wheelchair to get around to be someone who suffers from a disease.  That’s why I don’t give anyone shit for parking in the handicapped spot when they look perfectly capable of parking 30 feet back.

My dad raised us with the typical North Dakota work ethic.  Laziness is abhorred.  I used to hear these wonderful urban legends about people who left ND for big cities and were hired on the spot by companies when it was learned they were from ND.  “Those North Dakotans have a high work ethic!  You’re hired!”  Sitting on your ass while the house needs cleaning or not working hard at your job were not options.  Hell my mom sacrificed time with her family to get her nursing degree at night.  She worked all day and went to night school, with four kids and a husband at home.  My brother some how works his ass off even though he has Parkinson’s.

I realize that the best case situation right now would be for me to be healthy and work 40 hours a week.  To contribute to my household financially.  I keep thinking once I find a less stressful job, or lose some weight, or get some relief from medications, I can go back to working 40 hours.  But I’m starting to wonder if that will ever happen.  Having these conditions, I realize how unpredictable they are.  You can be fine for two straight weeks and then wake up one day, unable to move.  Then you wonder, what did I do yesterday?  What did I do to trigger this?  What do I need to change so it doesn’t happen again?  And then you realize: nothing.  I didn’t do a damn thing different in the preceding days.  I took care of myself, got enough sleep, ate right, keep my stress down as much as possible, etc.  Some days, there is NOTHING you can do to prevent a flare up.  Shit just happens sometimes.

So how to maintain a full time, or even a part time, job when you can’t predict one day to the next how you will function?  I guess you push through the bad days no matter what.  Am I a whiner because some days I don’t or can’t push through?  Some days I give in.

So a question to those who actually read this and have issues of their own, how do you push through and take care of your responsibilities when you feel like crap?  I really think the best thing for me is to find a low-stress position and work part or 3/4 time.  I really hope there is something out there for me to do that.

Right now KC has the most tree pollen it  has had in a long time.  Wundebar!  The extreme allergic reaction I’m having has triggered the fibromyalgia.  Oh well, I guess I’ll just take it one day at a time.

Sometime when I have some energy, I’ll blog about all the quacks lurking on Facebook.  “DRINK THIS SHAKE AND YOUR CONDITIONS ARE CURED!”  The latest is Reliv.  I am sure it’s like Advocare and Herbalife.  It might be convincing if it wasn’t a pyramid sales company.

And one final vent:  what the hell happened to the spelling and grammar in this country????  I know the internet and chat boards are contributing to this.  But in high school, I had to take a basic typing class.  Mavis Beacon, remember that????

I see so many people with really positive intentions but they can’t persuade me with their arguments.  Here are basic tools of communication lost on the internet age:

* Paragraphs.  Starting a new paragraph for each different thought or idea visually breaks up text.  Not to mention it helps the reader follow your argument.

* Spelling.  Just learn to spell.  Use the spell check and familiarize yourself with commonly misspelled words such as “they’re” and “their.”  Cripes.

* Grammar.  You is no fool!  I are mad at u!  Sweet Enola Gay, is it the education system or what?

* Punctuation.  Break up a sentence with a period or comma once in a while.  Try it, you might like it.

* CAPITAL LETTERS READ LIKE SHOUTING!!!

I am sorry but I can’t take people seriously in writing if they don’t at least TRY.  I know I’m not perfect.  I’m blogging and a lot of my blogs are written in a conversational style.   But at least people can get the points I’m trying to make.   If you are dyslexic or have learning disabilities, I think you are trying your hardest and I don’t want to hear from you.  You are not the ones to which I’m referring.

That is all.  *sneeze hack*  Tschus.

Posted in Thyroiditis, Endometriosis, Fibromyalgia, Rheumatoid Arthritis, Health | 2 Comments »

11. April 2010 by Bex.

So what’s new?  One of my brothers moved to Germany and my sister is going to be a court judge.  Very exciting!  I’m not sure how my other brother is doing right now; I hope he is well.  Myself?  I am up to the same old things.

First, I’m even more disillusioned with my career.  I am in a really negative place right now and I need to figure out how to change my situation or my attitude.  Both are tough things to change.  It’s amazing how toxic stress is to your body.  I’ve never had problems with heartburn until recently and just general stomach pain.  Right after a really stressful event, I get a flareup of my fibromyalgia.  Seems like common sense but when you are going through something very stressful, you get tunnel vision and don’t see the bigger picture.  Something has to give and I just need to figure out what step to take.  I’ve been mulling over this for a long time and I’m sure my blog reflects that.  I’m ready to initiate change though.

Our home buying program has hit a brick wall.  We can’t buy a home here or anywhere until we get over this stalemate with our mortgage counselor.  She won’t answer our emails to clarify some of things she’s asking of us.  We’re extremely frustrated.  I really don’t want to stay in this neighborhood much longer.  We’ve had a lot more cops hanging around.  That makes you feel safer at first - yay!  The cops are here!  But also it’s scary.  Why are the cops here so often?  What is going on?  This place sucks.

On a positive note, I’ve been taking Patton to obedience training once a week.  He’s doing so well!  He does have a thing with peeing on people’s legs however.  And he doesn’t want to do some of the harder things like “lay down” or “shake” but I think we just need some practice.  I’m going to a meeting for people who have or want to train to be certified therapy dogs.  That’s our goal so I have to figure out how to get Patton to that point.  Lots of practice and patience.

Of course, I indulge him too much and this is what happens.

I’m still doing a lot of volunteer work for the Pit Bull rescue.  The dogs are really sweet animals but they definitely need to be with people who understand the breed.  There are so many ignorant and irresponsible people out there.  I can’t believe the emails we get from people who want us to take their dogs because the dog has become aggressive or has too much energy, etc.  “Take the dog or we’ll have to put it to sleep!”  Gah.  But overall it is a very rewarding experience.  If I had the energy to do more, I would definitely do so!

Speaking of energy, I have managed to get a lot more exercise lately.  We are doing the 30 Day Shred, a Jillian Michaels dvd.  That woman is BRUTAL.  The workouts are only 20 minutes but they work everything and I’ve had a few people tell me I look thinner.  I haven’t dropped much weight but I think I’m toning up.  I’ll take that!  If I never lose another pound but can drop a couple sizes, I’m happy.  I just want my muscles to be stronger so I can support my crappy joints better.  So far so good.  I feel better about myself and it definitely helps the stress level.  My husband is so supportive too.  We have a ‘fridge full of veggies.  Good for grillin’.  I feel better having cut out so much crap from my diet.  It doesn’t cure anything and I still have pain.  But it’s better then wallowing in a bag of Doritos and Diet Coke.

And I’m sure you’ve all seen this silly photo by now but this is my pro pic from the Pinups for Pitbulls event at the Record Bar:

I look very pale.

I’ve also been getting my zombie fix lately.  We watched Dead Snow recently and that was hilarious.  It’s Norwegian and subtitled.  There are some fun Evil Dead references which made us laugh.  Very gross and funny stuff.

I just finished reading World War Z by Max Brooks.  It’s written as an oral history post-zombie war.  It’s well written and brought in scenarios you never think about or imagine with traditional zombie movies.  What if North Korea’s bunker system was actually a lot more extensive.  After North Korea sends all its citizens underground, did they all get infected?  When the bunkers are opened up, will there be 7 million zombies in the underground city?  Or what would it be like to go into the all dark, maze-like catacombs under Paris to escape the panic outside.  Only the infected come with you and you have to fight zombies without light or firearms to help you.  Fun, freaky shit.  Very entertaining read!

And the spring zombie walk is coming up on June 4th.  I’ve been talked into going as a zombie this time.  If I don’t have a new job by then, I think I can do it.  I’m thinking zombie paparazzi.  That way I can take as many photos as I want!  I’m such a dork.

I think I’ve yammered on enough for today.  Have a great Sunday!  Tschus!

Posted in Endometriosis, Fibromyalgia, Pin-ups, Thyroiditis, zombies, Rheumatoid Arthritis, NACA, Books, Dogs, Animals, Work, Movies | 1 Comment »

4. April 2010 by Bex.

I’m watching’ The Stand and thinking of swine flu and zombie virus outbreak and all that good stuff.  Seems to me that there are a lot of things in our lives that could go wrong and never do.  But since I don’t trust the Government, who can really say it never will?  I hate the Govt. and trust them less then the people I work with.  If that says anything to you…

I’ve taken Patton to quite a few classes for his obedience training.  I think he’s right on track for being a therapy dog.  He’s very gentle, obedient and calm.  He serves as a good model for the aggressive and hyper dogs in class.  He really calms them down.  His trainer is also looking at using him for a therapy trainer for other dogs in training.  I’ve seen  a growly, aggressive dog become really passive around him. Kinda neat.

Work….well that’ s just normal.  Nothing new.  Nothing good, nothing bad.  Just……….it is.  Still trying to figure out what to do with my life.

Ron and I have been working out together a lot while he goes to the track to run and I swim in the pool.  It keeps us mobile and burning off steam.  Practice with Patton for obedience is also a lot of work.  I am really happy to do that and to hang out with others who are into dog training and doggie resuce.

All I can do is keep being me and keep trying to work against all the diagnoses that I’ve been given.  I take my vitamins and supplements and medications and that’s all I can do.  Keep on fightin’ the good fight!

Tschus!

Posted in Thyroiditis, Endometriosis, Fibromyalgia, Rheumatoid Arthritis, Animals | 3 Comments »

6. March 2010 by Bex.

Holy shit, long time no blog!  I’d like to say there is nothing new in my life but there is tons going on.  So here is an update:

First off:  We beat Bioshock 2 just in time for the March 11th expansion pack. I haven’t planned any of the online portions of the game yet so I can’t really say much about the multiplayer, online death matches.  However the story was good for a sequel and the graphics, though at first seemed grainy, turned out to be really awesome.  I thought the game was harder overall with more melee type attacks.  Playing it on easy gave you a lot of hints that seemed a little unnecessary but that’s ok too.  I love the art deco themes and the characters are interesting.

Second:  Lasik went awesome!  I can see!  It was horribly uncomfortable and while they give you a lot of valium, that just wears right off when you are under the laser.  It was nice that my husband was allowed to sit in there with me and I clawed the shit out of his hand during the procedure.  But the awfulness lasted only about 20 minutes followed by a horrible ride home.  I took something to help me sleep and by the time I woke up 4 hours later, I felt worn out but fine.  I did have to wear some groovy blinders at night for a few days to keep me from scratching my eyes.

I had some lovely impressions in my flesh every morning.  But it turned out really well and I’m happy with it.  No more contacts or glasses.  Schweet.

I’ve been working pretty hard at my health shit.  I found some books at the Half Price Bookstore which talk about fibromyalgia and endometriosis.  I’m working on a symptom and food diary to try to pinpoint triggers.  During this time I’ve had a fever that came out of nowhere and am trying to figure out if there is any rhyme or reason to things like that.  So we’ll see what comes of this new experiment.  I still would like to lose the rest of the 40lbs I gained.  That means I have another 15-20lbs to go.  Being overweight and chronically ill is not easy.  It just exacerbates all your shit.

No new pets and no pets have passed away, no matter how old and infirm they are.   I’m starting Patton on obedience classes this coming week.  I hope that when he gets over his fear of oh…..EVERYTHING….he will be able to start training for a therapy dog program.  Our vet seems to think he’d be excellent at it because of his very mellow temperament.  He went in today to get his distemper shot and a heart worm test. He’s a very sweet dog and I think he’d be a great ambassador for his part Staffordshire Terrier breed.  So many Pit mixes like him are put down right away or taken from their homes in cities with breed bans.  We are learning a lot about this because of our involvement with a pit bull rescue.  This volunteer work has been very rewarding as well as educational.  Just to get it out there, I fucking hate the media.  I hate them all.  Their mission is to sell news by freaking the shit out of everyone in a community.  Period.  Misinformation be damned!  We have to sell newspapers, ratings, etc!  Fuck the truth!  Ok sorry, I’m off my soapbox for now.

Last couple of thing:  I’m going to take a pinup photography class next weekend.  I’m going by myself, which for a hermit, is a big deal.  I’m freaked out by social situations like this but I think it will be fun and informative.  I think the new pin up style with the tatts and vintage/rockabilly themes are awesome.  This all proceeds the Pinups for Pit Bulls event in KC on the 19th.  I’m all for animal rescue organizations, beer and music.  Now, what to wear?  No clue…  The last item of discussion is that I really want another tattoo.  I’m trying to find something that reminds me of my mother.  Yesterday was the 26th anniversary of her passing.  A long ass time ago.  I really miss her and would like my next tatt to be something to do with her. Ron is pretty ready for more ink so we’re going to investigate some new tattoo parlors.   And finally, I hope to hit up the roller derby around the end of the month.  It’s going to be a girls night comprised of women I work with.  I think we’re going to get a little drunk and watch some chicks on roller skates beat the crap out of each other.  That should be fun!

I’ll update my blog with another stitch or two when the time is right.  I’ve got some ideas on the burner for new embroidery and I’m excited to get started.  So overall things are good but everyday is a learning experience.  Some times I fuck up royally and other days I have things in control.  I can’t seem to predict from one day to the next how it’s going to go.  Just doing the best I can!

Tschus.

Posted in Rheumatoid Arthritis, Fibromyalgia, Endometriosis, Crafts, Embroidery, Video Games, Dogs, Animals, Hobbies | 1 Comment »

19. December 2009 by Bex.

Have you ever asked Why Me?  Have you ever cursed God, forsaking His name because of all that you’ve had to suffer?  Why these deaths? Why these illnesses?  Why these hardships?  I can understand You having a plan for one issue or the other.  but everything in my lifetime?  Why would You do this to me?

I fail to see the bigger plan for a kid losing her mother when she was 7.  For this kid to grow up without much emotional support, feeling isolated, over-sensitive, morbid and sad.  The teenage years being far too serious, looking for warmth and love in all the wrong places, further sequestering emotions from people in an attempt at self-preservation.  Then in adulthood, this kid seeks unhealthy relationships, enters into a failed marriage, goes through illnesses and then major surgery.  Nothing that a person voluntarily and actively seeks, but yet this is the path a person seems set upon.  And then when she thinks the worst has passed, major/chronic illness sets in.

Why?  If you claim to be a Christian, you may wonder why someone curses God.  Why the fuck are you so set against me?  Why me?  Fuck you God….I’ve had enough.  I’ve been through enough and I remained faithful.  Yet you continue to put me through this hell.  What is your plan for me?  Is there a plan at all or am I putting my hopes in a false God?

Even if you are the most devote, ,you’ve been though this or will at some point.  This is the story of Job.  And maybe people like me are not part of some grand, fucking divine plan.  Maybe we are simply the strongest who survive the whole plot, the whole story.  Perhaps the strong and healthy people as the ones who will succumb quickly in the grand scheme of things.  Maybe the sick ones are the people who live the longest because we put up with the most, endure more hardship and because of that, slowly become stronger in the end.

Unfortunately those of us who go through these diseases are the most isolated.  We are lucky to find one person in our lives, be it family, spouse or friend, who will stay with us through all the trials and tribulations.  I found today that my family, although loving and wonderful, cannot be there for me.  They just don’t understand and aren’t capable of the empathy I need throughout this illness.  It’s not their faults, but that is just life.  And it is hard for me to grasp.

When you are chronically sick, you quit communicating the truth to others.  I’ve only told those at work because I’ve felt forced to.  They have to pick up my slack, and they need to know why I’m sick.  But my family and friends have not heard the whole of it, nor have they had to.  I have tried, however, to reach out to certain acquaintances and family, but I don’t feel that they understand.   I feel no blame or anger about that.  I can’t say that I would feel any different if I were in their situations.  When I try to talk to others about how I feel emotionally and/or physically, others don’t understand or think I’m making it up.  Therefore, deep down, I question whether or not I’m crazy.  Maybe this isn’t real?  Maybe I’m an attention whore, just like they think?

I feel like I have to make things up or only tell half-truths about my life to people.  “Yes!  Everything is wonderful.  We are so blessed to be living amazing, happy lives!!!!!  Blah!  Blah blah blah!”

At some point, we have to realize that we are sick.  We have X, Y and Z to deal with and our priorities involve getting through our daily shit without physically collapsing or breaking down emotionally.  Getting through a day/week/month of taking care of our kids, our bills, our marriages, our family, our friendships, our jobs is a lot to deal with.  When you feel you have to make excuses for this or explain it to others, it’s hard.

I’m not a drama queen.  But I have major health issues that prevent me from working full time, from actively involving myself with relatives, that prevent me from trusting others and that keep me from having a party hardy lifestyle.  Hell I feel lucky if I get through the day on the most minimum of prescription drugs AND am still able to operate a motor vehicle.  I’m so damn tired of it and I keep thinking it’s temporary and it will get better.  This isn’t really my life.

I guess it is my life.  No matter how many drugs I take or what I eat or don’t eat, it doesn’t go away.  This is my life.  Period.  And we better find a practical way for me to deal with it.  And I better quit feeling bad at the friends I lose because I can’t go hang out every time they want to.  Or my boss doesn’t get why I can’t lift something over 20 lbs.  Or why I don’t volunteer myself to work extra hours.

This is my life now.

And because of who I am, I cannot end a post on my blog with a subject matter so serious.  So I leave you with all my feelings, my whole heart, my spiritual frustration and a photograph of one of my pet rats in my husband’s pants.  Good night.

Posted in Fibromyalgia, Rheumatoid Arthritis, Infertility, Family, Health | 5 Comments »

6. December 2009 by Bex.

I’m not sure if it is depression or plain laziness.  I haven’t  been blogging much lately.  Of course, that could also be because of the lack of excitement in my life.

Well ok that’s not entirely it.  We’ve decided to stop trying for a baby for a while.  My period isn’t getting any better, in fact it in some ways is worse.  The pain is still there, although managed by pain killers, but it’s lasting longer and is heavier.  We’ve tried for over a year and nothing.  Well we haven’t tried THAT hard…it hurts to try so much.  On a recent trip to the GYN, I was told some of the pain I experience seems to be related to autoimmune disorders.  Seriously?  So sex is painful and it’s just another by-product of other diseases?  Just kill me now.  She did say she didn’t know what the connection is, only that a lot of women who have similar pain also seem to have immunity issues.

I have also been on steroids for a long time and can’t keep going on that.  I need to go on some real RA drugs and those aren’t good for babies unless you want a super pharmaceutical mutant baby.

I don’t feel like a real woman.  I feel really dumb just TYPING that statement but it’s true.

I’m sure once my hormones even out that I will feel better about it.  Having a birthday coming up isn’t helping as the TICK TICK TICK sound just gets fucking louder.  Plus I’m having all these dreams lately about our children-seeing them, losing them, not being able to have them….they are so real.

It’s not meant to be right now.  In the meantime we’ll keep working towards our goal of getting a house and getting me healthier.  I have been in denial and I can’t live that way anymore.  It isn’t going to get better with nutrition, willpower, bare minimum medication, etc.  This is my life now.  Whether I want it or not, reality is setting in.  I just don’t want to be super medicated but hey, what’s one or two more drugs in my system?

All right, enough whining and bitching.  Life is hard, shit happens, etc. etc. etc.   I’ll get over it and venting is helpful.  Thanks for listening to my discombobulated bitch-fest.

Here are some crafty things I’ve been working on lately.  I’ve only completed one and a half so far because I’ve been too damn depressed to do anymore than that.  *sigh*  I’ll get them finished soon!

Posted in Fibromyalgia, Endometriosis, Rheumatoid Arthritis, Cross stitch, Infertility, Health | 4 Comments »