Wednesday, August 28, 2013

What I want and what I can do

... are now two different things.  This is the new reality.  I feel like I'm 110 years old having to say this, literally.  Anyway, not my point. 

I have a list of things I need to get done.  These are also things I greatly WANT to get done.  I want to go through all the boxes in the spare bedroom.  I don't want that room to look so much like a "catch all storagey" place.  So, I want to finish going through the boxes and shelving the books.  I want to box up all the books I've read and have no intention of reading again and donate them.  I want to get rid of all the stupid cookbooks I have because I never use them.  Not ALL of them but, the ones I purchased that I don't want.  You know what I mean.  I want to make up the files pertaining to "house stuff".  I want to get everything off this table in the living room and get rid of the stupid table, opening up that part of the living room.   I need to vacuum again, I need to swiffer again (these two things are a never ending battle).  I need to get a spray bottle and clean my stupid microfiber couch.  I have more laundry to finish. 

My brain just launches into telling myself that I need to go and do all these things as fast as possible with my time.  My brain still tells me if I get everything done now, I can have spare time afterwards to hang out and do whatever.  Except, my body doesn't get the memo.   I do these things, ignoring the signs that keep flashing at me to stop.  Then, I'm toast.  So, instead of enjoying my spare time with a nice walk or going out and doing something, I'm a zombie lying on the couch wishing that the world would go back to the way it was.

Welcome to the new normal.  I've heard this term tossed around in many forums, on facebook, twitter, etc.  This is my new normal.  I have to learn to pace myself.  I have to learn what I can do and what will have to wait until the next energy surge.  Not EVERYTHING needs to be at once. 

I wish I could afford a maid.  Although, the vacuuming still needs to be done on an almost daily basis.  My dog is the fluffiest non-fluffy dog in the world.  He walks and the long hairs leap from his body at a rapid pace.  Seriously, he's a hair machine!   And, I love to cuddle him but I swear I'm hairier than he is after I hug him.  I keep waiting for him to be bald one day but ... it seems when one hair falls out, three sprout in place.  But, I love him and I love that he always wants to cuddle me.  A dog's intuition is spot on.  I always need those hugs when he comes over and presses himself into my lap. 

My outlook is getting a bit better.  I've accepted that things are the way that they are, and I am focused on trying to enjoy life however that may be.  It may not be by losing weight as quickly as I want to. It may not be super strenuous hikes for awhile.  It will just be what it is for now.  I can't change it.  It's OK at the moment, I'm not fantastic but I am not dying either.   I have to remember that.  I am out of the hospital, I am able to live on my own.  I don't have major organ damage.  I have to focus on the positive.  I have to focus on what's good.

I am off for the next three days.  I plan on mentally and physically regenerating.  I plan on wrapping my brain about the happy go-lucky person I used to be and making her reappear.  I have to remember that being happy doesn't center around what I look like on the outside.  I am a Weggie, I take prednisone, I am stuck this way for awhile.  Best thing I can do is stop myself from gaining anymore and I think I have a good handle on that.  No one wants to be around a Debbie Downer.  No one wants to talk about my illness all the time.  There used to be other things I talked about!!

I want to be in better shape, I want to be healthy and live a long life.  Those are things I want.  What I can do is ... accept myself for who I am, know that I am a good person with a good heart, know that I am trying to control what's going on with me as best as I can to live a long life.   This is my life now, and who wants to be sad all the time?  I know that I sure don't.  It stops me from doing things, it keeps me from enjoying things.  I am alive now, I am not hospitalized, I'm not on dialysis.  I'm pretty well off in terms of what could be and what may be in the future. 

I can be happy.  I can live my life.  So what if my chores take a few days?  So what if things are different than they were before?  I'm in charge of my happiness.  I won't let this stupid thing take that away from me. 

Monday, August 26, 2013

Just another Manic Monday

I think I might be getting sick.  I know, I'm sick all the time, but ... I think I might be getting a cold on top of this.  I'm not sure.  It's so hard when my sinuses and other cold/flu areas are already rockin' and rollin' with the snot rockets, the congestion, the runniness, the sneezing and coughing and feeling like I was hit by a truck.  How does one tell when they are actually getting something like a cold?

I feel worse, for one.  Part of this is thanks to the new higher dose of meds I took today but ... I felt more run down before I took them.  I felt more congested and more coughy/sneezy.  I also did my sinus rinse and blew out some really gnarly green things.  Green means infection right? Was that TMI? 

I really hope I'm not going to be getting worse.  I really hope every morning when I wake up that I might feel a wee bit better.  I just want to be able to get through my day without whimpering that I wish I was in bed.  I want to get through the day without day dreaming about my couch or the fluffy pillows on the bed.  Today isn't that day.  Today I yearn to be at home in my sweats more than ever.  I feel lousy.  I feel miserable.  It is taking everything I have to put on a happy face and go along like nothing is wrong.

I know I don't have to pretend nothing is wrong.  Everyone knows that I have this blasted condition.  However, I kind of have a thing against whining.  I hate whining.  I know I do my fair share of it here in this blog, but I can't stand it when I hear it.  I can't stand it when it comes out of my mouth too, don't get me wrong.  Most of the time, I can tune it out.  I can let someone just do their thing, whine about whatever and not let it get to me.  Other times?  I'm not so successful.  In any case, I don't want to sit here amongst my peers with a sad frowny face on.  I'm not trying to call attention to myself.  I just want to be a part of the team like I always was. 

This may work against me in my hatred of the "You Don't Look Sick" comments.  Well, I'm sorry if I am trying not to make everyone uncomfortable by pouting all the time.  I have what I have and it's for me to deal with.  I don't need it to be front and center 100% of the time.  I'm trying to find my new normal. 

I have a busy couple of days with doctor's appointments, a dentist appointment, grocery shopping and going to the DMV.  I can hear your jealousy about my DMV trip.  You know you want to come with me! Anyway, I already feel like I've overdid it and am not looking forward to the rest of the week with my running around all over the place like a chicken with its head cut off. 

I am really trying not to overdo it.  Unfortunately, the doc appointments are necessary, the vet was necessary, the dentist is necessary ... it's not something I can really change.

Man, I really wish I was at home right now.  Really Really Really.

Friday, August 23, 2013

Finding the Positive and Quieting Myself

It's 8:42 PM and I desperately want to go to bed.  I can even do so if I wanted to because I don't work tonight and I am at home, in my pajamas, on my couch.  So why am I not in bed?  Because it's 8:42 PM.  I'm 33 years old, not 65, even though my body wants me to think I'm 180.  So why not rest my crumbling body?  Because I work nights 4-6 nights a week and it's hard enough to stay up as it is without flipping back to getting to blissfully sleep through the night on the weekends.  

I overdid it again today.  I felt like I was feeling good.  I made my breakfast, I vacuumed, I swiffered the floors, I dusted the living room.  I took out the garbage and recycling (after bringing in the cans from the street).  I started laundry, I cleaned the cat box and vacuumed the carpets, I made the bed, I emptied the dishwasher and did the other dishes.  After a shower, I decided to go for a walk with my dog for two miles.  

It had been my plan to go out for dinner with my husband as I had been cooking all week and I was looking forward to not cooking.  But, he's scuba diving in the morning and didn't want to eat heavy.  So I went to the grocery store and got stuff to make dinner.  While starting to make dinner, I realized I had done too much today.  I felt horrible.  I managed to make dinner but it has been a steady downhill spiral ever since.  

Now, my face is killing me.  It's like someone took a wire brush to the inside of my nose, and while they were up there took a few potshots at the inside of my sinuses and stuffed a bunch of the trash up behind my eyes.  

Before I run off on a tangent of whining, let me tell those of you who read this who don't follow me on Facebook about the daily photo/post challenge I have given myself.  For the next 30 days, I will find something every day that makes me smile/happy and take a picture of it.  I will also make a conscious effort to make a status update that is positive in nature and not whining or talking about my illness.   I call it "Finding Happiness" because there are little things out there that can bring happiness every day.  Sometimes, when dealing with something like a lifelong illness and a cancer diagnosis, it's hard to see those little happy gems out in the world.    I am going to make every effort to find those things and acknowledge them so that I may combat the sad/dark feelings that keep wanting to take over. 

I also want to start making a conscious effort to NOT talk about me with those around me.  It's clear that it's annoying, and I even annoy myself at times.  It's a part of my life, it's not bothering or affecting the lives of anyone else so ... I need to keep it to myself.  If someone asks, sure, I'll answer questions.  But it absolutely does not need to be brought up ... ever. 

I even feel like I can't talk to my husband about it.  So, goodbye disease, we aren't gonna be talking about you anymore.  At least, not with everyone.  

No, I'm not being "poor me" about this.  I just realized how annoyed I get when someone keeps mentioning something and it seems like they are looking for attention.  And, I have started noticing reactions when I mention things so ... I am not going to be bothering anyone with it anymore.  I think it will make everyone happy.  

Oh bed ... how I wish I could go cuddle you right now.  I also have the last load of laundry going right now.  I got a dress in the mail that I ordered on eBay and the seller was a smoker.  OMG were they a smoker!!!! I am washing the dress in the hopes that it doesn't smell like a tobacco smoke factory when it comes out. It's super cute too.  

Oh ... I joined the Vasculitis Foundation website and have been in contact with some people already.  I got an email from the head of the Sacramento Chapter of a Vasculitis Support Group.  They are actually meeting on Thursday but I won't be able to get to Sacramento  that day so I'll hopefully get to go to their December meeting.  She's also going to put me in contact with some other Wegener's folks via email.  I'm excited to have more people I can talk with .  

OMG.  Whose Line is it Anyway?  I love this show.  I am about to die from laughter!!!! 

Happy Friday Everyone.

Wednesday, August 21, 2013

Big Red Balls

Some of you went there  with that title and SHAME ON YOU, I say.  Not really.  I would have gone there too because I am a 13 year old boy trapped in a grown woman's body.  Anyway, have you ever watched that show "Wipeout"? If so, you know about those Big Red Balls in the first obstacle course.  Everything could be going smoothly on your journey through the course and then you get to the Big Red Balls.  I've never seen anyone successfully cross their path. 

I truly feel like I've come to the Big Red Balls and fallen off course.  Which course?  My course to being more positive and seeing the good in my life right now.  I know I should still see the good but at the moment, it's like I bounced off a big red ball and landed in the pit of despair. 

Now I'm crossing TV shows and iconic 80s movies but you know what I mean.  I'm sad.  I'm angry and sad but mostly I'm sad.  In fact, I spent most of my drive to work a teary blubbery mess. 

It's not like I have any ground breaking, upsetting news that has brought on this new batch of tears.  No.  It's just one thing after another and I stop myself and think ... Why me?  What did I do to get such punishment? Was I bad in another life?  Have I morally wronged someone somehow that I now have to spend the rest of my life in a battle of wills with my own body?

Today was another day of doctor's appointments.  First, the good ol' endocrinologist (thyroid lady for those ot up on the lingo).  My Thyroid tests are still not giving her an answer to what is going on in there.  I still have Hashimoto's, I still create antibodies against my own thyroid.  My poor little thyroid gland is an even bigger moth eaten mess than when she last peeked at it with an ultrasound. And, now she wants to rule out a growth on the pituitary gland.  I know it's common.  I know it's not life threatening but ... I have to do more tests for that and more blood work and more this and more that and it's just like ... ENOUGH!! 

I mean, I'm completely happy with my doctors and their willingness to test, test, test but at the same time I just want to stop with the testing already! I feel like going to Kaiser, parking myself in their labs and saying "Just do it all.  Test everything."

I have to have a Radio Active Iodine Uptake test or an RAIU for short.  Monday morning I go to Kaiser bright and early, take a pill to make me glow, go home.  Then come back 4 hours later to have them scan my neck and then head home (actually to work that day).  The next day, I go back to have them scan it at 24 hrs, leave for an hour and come back to have the ...................... MRI. 

MRI is a piece of cake right?  Sure, if you aren't horrifically uncomfortable with small spaces and currently are an obese fat ass like me.  I had to be severely medicated last time.  I had an IV and it was easy.  This time?  I have two valium.  Hopefully that will be enough.  I'm gonna try and NOT think about it until I have to.  I know what to expect it's just ... small spaces suck and when you are a big person having to squeeze into the same small space as the tiny people around you ... it's not fun. 

I'm not even worried about the potential growth.  It's just that there is possibly just one more thing going on. 

I already have a Japanese man and a German man fighting for top billing rights inside my body.  Hashimoto's and Wegener's.  Interesting, no?

So, a moment to spew some anger at the world about my situation, can I?  What did I do? I am a good person.  I have hardly drank in my life, I don't smoke, I don't do drugs.  I pay my bills, I pay my taxes, I work my 40+ hours, I gave my ex-husband EVERYTHING in the divorce, I have two bankruptcies because of him, I have done everything possible to live a good, clean life.  For what?  To be sick every day, to be in pain, to be happy one minute and then sad and then angry?  To have worked so hard to lose almost 40 lbs just to gain it all back and then a bit more?  I don't understand.  I feel like I am being punished in some fashion and then I think of the aforementioned ex and I am mad because ... he's got it made.  He got a new house right away, cars, marriage, kids ... everything HE wanted.  

Am I being punished for getting a divorce?  Am I being punished for standing up for myself and what I want? It's the only thing in my life I can think of that would have brought some great consequence down upon me.  My option of kids went from being wide open to ... possibly not at all.  I can't morally, ethically adopt a child in this condition currently.  I need to make sure I am going to be in a good place before I can even THINK about looking at that option.  I finally have a house but ... we had to claw and fight our way back to it.  There was no "easy out" for us.

I don't know.  I know I'm being petty but ... he screwed me over and is somehow living life and being happy and all that.  I want to scream.  I want to scream at the world.  I want to scream at whoever is listening anywhere that I am mad as hell at everything right now.  Because I am.  I am, damnit!  I'm mad and I'm sad and it's not fair and ... ARGH! *&^&#($*@(@(&^$(!!

OK ... I think I might have gotten that off my chest now.  Maybe.  POssibly.  At least for the moment.  I need to really be focusing on what's good about my life  instead of focusing on the shitty parts.  Because, there are good parts.  A lot of good parts.  Sometimes, it's just hard to see them. 

I'm sorry for ranting.  Like I said in an earlier entry, I've got a good grasp on what's happening but ... sometimes I have to be able to have a moment,  you know?

Have a good Wednesday everyone.  Don't forget to keep smiling.

Tuesday, August 20, 2013

Sometimes I have believed as many as six impossible things before breakfast

My blog has gotten grim and depressing, has it not?  Whine, snivel, cry, moan and groan is all I seem to do.  It's not fair.  Why me?  Why this?  Why now? Poor me.  Ugh.  Sometimes I am disgusted with myself when I think back to what I have posted here.  Snap out of it, Nicole!!

I know I'm entitled to my moments of sadness/anger/questioning.  It's a life altering situation with changes I'll have to make for the rest of my years on this planet but you know what?

It is what it is.

Dan hates that saying but it's quite true in my situation.  It's here.  It's gonna stay.  It's time to just accept it, live with it and have the best life I can, right?  I mean, all I have to do is log into my support forum, read through posts and remember how lucky I am in the grand scheme of Wegener's.  I don't have it THAT bad.  I have ongoing annoying crap.  I feel sick all the time, but, my kidneys work, my lungs while sometimes malfunctioning on a supreme level are still both healthy.  My nose has yet to collapse although if this scabbing and crusting keeps up I am worried about it.   My joints seem to be happier again.  I am in a good place in comparison to others.

Yes, we all suffer in our own ways and this thing really does take a bite out of your regular life and make everything change ... but, I am in a good place.  I'm able to still work 40+ hours a week, I am able to live a somewhat normal albeit altered existence and I think I lost sight of that for awhile looking at everything bad about the world and my Wegener's. 

I've been able to maintain the weight and not gain, despite the continued use of the Prednisone.  That makes me happy.  I am OK just staying put and not getting any bigger.  But, you can be damned sure as soon as the Prednisone is gone I am going to be focusing hard on getting the number to come down.   I eat clean.  I watch the carbs, I watch my sugars, no bread, no soda, etc.  If I keep that up without the steroids, the weight has got to start coming down. 

I was able to walk 2.2 miles today.  That makes me VERY happy.  I hope (if I don't spend all day at the doctor tomorrow) that I can go and try to go a little bit further tomorrow.  If not the same amount.  Loki seemed to enjoy it and I felt OK afterwards for a bit.  Mentally anyway, physically I started to feel very ill.  But, that's OK.  Baby steps.

I am still holding out hope that dayshift will be in my future.  I think that will be the missing piece.  I feel much better on the weekends, sleeping at a decent hour, getting up when I wake up, cooking healthy meals and sitting down and eating them right away.  Not to mention being able to see my husband on a more regular basis. 

In the big picture of the world, I've got it pretty dang good.  I've got a good team of doctors on my side.  I have my blood work schedule written down, I've got my medications mapped out.  I'm good.  I've got a handle on this as much as I can!

In the theme of the six things ... I will now acknowledge 6 positive things about my life.

1. A great husband/best friend
2. A wonderful family
3. The best doggy buddy a girl could ask for.
4. I own the roof over my head
5. I think I have my budget figured out.
6. A good job with benefits that help this medical crisis not cost me an arm and a leg!!

Have a fantastic Tuesday night everyone.

Monday, August 19, 2013

Twenty Years AGO?

Tonight, Dan and I had trouble finding anything to watch on Netflix or Amazon Instant Video.  Neither of us really wanted to watch tV either.  While I was getting the dishes washed up and put away, Dan finally made a selection.  

The Crow. 

Do you remember it?  I actually had never seen it.  Not sure why, I just never did.  So we settled in to watch it.  I did fill Dan in on the sad reality of the movie.  Brandon Lee was tragically killed while filming the movie when a live round had been lodged in the barrel of a gun that was used to shoot blanks.  When he was shot in the movie, he was actually shot in real life.  Brandon Lee, the son of Bruce Lee, then died and the movie had to be finished with a stunt double. 

We were snickering and talking about the music, remembering those musical times and the bands that we liked back then.  

It was then we were discussing when the movie came out.  1994.  OMG.  Next year is 2014.  That movie came out twenty years ago.  Suddenly I feel rather creaky and old.  Almost twenty years ago I was about to turn 14.  I thought I knew everything there was to know about the world.  My life was perfect.  I had everything a girl could ever want.  Nothing could touch me.  

Damn.  Twenty years ago!  How are the nineties that long ago?!  I was in high school in the ninties!!! AHHHH!

Somehow, we got to talking about The Real World: San Francisco.  We talked about Pedro Zamora, and his ground breaking role on a reality show as an HIV-Positive, openly gay male.  We talked about how he died shortly after that show, and that he had remained close with cast members.   I mentioned that his former partner had recently died from cancer.   I looked up online when Pedro died .... it was also in 1994. 

Twenty years ago.  

It boggles my mind how fast time has gone since graduating from high school.  Truly, it has.  When I was in school, the years crawled by because I couldn't wait for the next school year, to get older, to get to summer vacation, Christmas vacation, etc.  Those years seemed to drag on and on.  1998 came, I graduated and then suddenly, someone hit the fast foward button on life. 

The last year and a half seems to have gone fast.  I know I haven't been enjoying myself.  Yet, it is still flying by.  I'm shocked to be so close to starting 2014 when I still feel like 2013 should be starting.  How can it almost be over? 

So many cool things come to mind when I think back to the nineties.  Of course, the first worst moment of my life also happened back then.  It was a tumultuous period of life, being a teenager, a high schooler, then heading off into the real world. Losing my mom, wondering where life is going to take me.  It was all so crazy. 

And, don't even get me started on how we all dressed back then.  Wow ... I shake my head when I see it.  But, didn't we think we all looked so awesome?  Yes.  Yes, we did.  

It is crazy that the nineties were already 20 years ago.  Y2K and all the hooplah from that ... a distant memory.  

Time ... stop moving so quickly.  I don't need to get any older any faster than I already am!!! Slow down a little so I can enjoy life a little bit.  

I don't want to find myself sitting here in 2033 thinking about how 2013 and my diagnosis time was already twenty years ago.  Oh ... man, I don't even want to think how old I'll be in 2033.  

I need to stop and look around a bit while life is passing me by.  I feel like I am starting to miss out.  

Sunday, August 18, 2013

Ripping Wings off of Butterflies

I'm a girl.  A woman, I guess. I  mean, I'm not a kid anymore, as much as I act like one.  I'm childish, I'm obsessed with things younger than my years.  Yet, there are moments when I am very much an adult, with adult dreams and adult goals.  I'm almost 34 years old, ten years older than when I figured I would have my first child.  

Do I have a ten year old?  No.  I don't have any kids.  For many years of my twenties, I went back and forth about the idea of children.  Growing up, I couldn't wait to be a mother.  However, when I was married the first time around, there was NO desire to have them.  I believe it was because I knew this wasn't the situation for me.  When I got married the second time (yes, I've been married twice, it's 2013, get over it.)  I started to feel like I wanted children.  Those maternal urges started poking me at various times.  I'd melt at the sight of babies, hearing toddlers talk made me grin like an idiot.  I started to imagine what my kids would look like.  

It was always a decision I could make.  It was my body, my life.  I could decide when we were going to make that all happen.  It was an option I had.  My option.  A decision entirely up to me.  

Once again, this monster inside me has taken that from my hands as well.  My medication is detrimental to fetuses.  I have taken preventative measures to ensure that I absolutely will not forget birth control and get pregnant.  I did something you aren't supposed to do before you've had children because I really didn't have a choice.  I absolutely cannot slip up and get pregnant while on the medication.  And ... the two years I am on this medication is the minimum.  I could come off the meds in two years and flare badly and be put on the same meds or something stronger.  It's just not a guarantee that before my 36th birthday I'd be given control of my child-making body parts once again.  Nope, I have absolutely zero control.  The decision isn't mine.  

I just purchased a half million dollar house.  I have a ginormous mortgage payment with PMI.   I have two car payments.  I have utilities and bills.  Yes, these were decisions that I made but ... they are done nonetheless.  Adoption feels like an enormously expensive option that is JUST out of reach.  Not that we are even anywhere ready to pursue that ... I just wanted to tell myself there was still hope for me.  

It doesn't feel like there is.  Dan mentioned that I can't focus on that right now.  I need to get to getting better first.  Would I be able to care for a child right now?  No.  I'd be a horrible mother because I work too much, I feel sick all the time, etc.  So ... he's right.  I have no idea if this is going to keep getting worse and would I want to check out on my child's life before they ever got to know me?   Or ... am I going to die and leave my child with a lifetime of heartache?  Would they hate me for adopting them knowing I could die and leave them behind?

As the child of parents that died, I know the feeling of anger that springs up.  Anger at them for leaving me behind.  I felt it.  I was mad that they could leave me. Even though, logically I knew this wasn't their decision ... I was still mad that they left me.  Sometimes, I still get mad that they left me because I NEED them sometimes.  I need my Dad right now more than ever.  I'd give anything just to get some time with him to talk ... I'd give anything to hear his voice.   I want him to hug me and promise me that it is all going to be OK.  

I can't consciously do that to a child.  But, there's this part of me that really really really wants to be a mom.  I want that.  I want to be a mom.  And, at this current moment, I don't get to make that decision for myself.  It's a shelved idea.  It's off limits.  It's not presently in the cards.  Maybe in a year, if I'm doing OK, we can revisit the idea.   But, now's not the time. 

The child in me wants to scream and throw a temper tantrum because this isn't what I want.  And, it's all about me, right?  It's hard to be an adult and have everything else run your life.  It's hard to have control taken away.  It's hard to face this and be quiet about it.  I'm still trying to lock it up, to not talk about it, to not think about it.  But, today, it's weighing heavily on my mind.  

Dan made a comment today, joking completely about something but ... it was the way I was holding his cousin's bear.  It looked like I was breast feeding the bear.  And he was laughing and said "a girl can dream" and it was like an arrow was shot through my heart.  I know he didn't mean anything malicious by it but ... right now, it feels like that's never going to be a part of my life.  He can leave me and find someone else, someone healthier, have kids, live the life he wants ... and I still will be in this position.  

I need to get my brain out of this dark place.  I need to find the positive again.  I have a diagnosis and a treatment plan.  My doctor will keep me alive.  I believe that.  I need to get out of this darkness.  I need to be happy again.  

Saturday, August 17, 2013

Kimono versus Muu Muu: The Showdown

Shopping with this grotesque prednisone shaped body is a challenge.  I know what size I can wear, but I'm also an adult woman now and not considered a "junior" so I have to be careful not to get anything that might be considered "junior plus".  I've got hips.  Large ones at that.  No junior anything is gonna get over them. 

I enjoy wearing dresses and feeling somewhat girly.  However,  I have noticed some frightening fashion trends in my quest for new clothes.  For one, why do all the dresses right now have to be floral?  I like floral patterns, but there's a fine line between cute dress and muumuu.  I'm fat, I don't need to draw any other unneccessary to my largeness and getting a dress that looks like a muu muu is a surefire way to accentuate my size.   Two ... spandex.  What brilliant rocket scientist thought that anything spandex should be made into plus sizes.  There are things that could work and others?  Oh good heavens, no! And then ... there's the "Kimono".

Ah yes, a Kimono.  Also known as a Japanese robe like dress thing.  Kimonos can be absolutely beautiful .............. when wore by tiny Japanese women.  A Kimono was made in Japan.  The women of Japan are slender, tiny, petite, etc.  Japan doesn't have the obesity issues that plague the USA.  However, someone here in this country has decided to make plus sized Kimonos.  Or, to refer to dresses as a Kimono style.

No.  It's not a Kimono.  It's a muu muu.  I know a muu muu is another traditional dress worn by women of a Pacific Islander descent.  However, those women from those Island nations are also not known for being petite or tiny.  A Kimono was not made for a large person.  It then becomes a muu muu.   Dispute that all you want, if I put my fat lard butt in a Kimono, it's gonna look like a muu muu! Honestly, why doesn't anyone think about these things?  Do they think women are going to purchase it because it has the more elegant designation of Kimono?  Am I the only one who has caught on to this?

I've seen several dresses that would look so pretty if I weighed 50lbs less.  It's not a flattering color/pattern/cut for someone of my size.  It wouldn't make anyone feel good about themselves to wear it, you know?

When you feel like hell on the inside, it sometimes helps to dress up the outside.  Everyone walks taller and feels prettier when they are dressed nice.  Unfortunately, the benefit of my disease is ... WEIGHT GAIN from the medications so ... it's hard to balance looking pretty and not feeling like I am wearing a muu muu. 

Now that I have devoted an entire entry to the differences between two dresses, I think I'll focus on other topics.   Like, ... anger? 

I am having a rough time with things right now.  The frustration levels are through the roof.  I have what I have and it is what it is, I can't cry about it anymore but now, I'm at that point where I'm angry.  I'm mad as hell and yesterday, when I went through some more pain in an effort to combat this monster, I was livid.    Why?  Why did this have to happen?  Why did I finally get on board and motivated to lose weight and live a long healthy life only to be knocked down by my own body rebelling against itself? 

It feels like everything is up in the air.  We were talking about renovations for the future of our house and I muttered "Its not like we can have kids."  Because, at the moment, I can't even begin to think about how I can make that happen and ... it upsets me.  It upsets me a lot.  It's a decision I should be allowed to make but once again it feels like life is making all the decisions.

I have no control, remember?

I wanted to be angry and bitch about things.  I wanted to shake my fist at the world and talk about how unfair it was that this was happening to me.  But, I was shut down immediately.  I was told that being angry and complaining isn't going to change anything.

Um.  OK.  It will help me.  It will get it off my chest and I won't carry it around with me all the time. I won't get a quiet moment and dwell on the fact that I get uglier every day with this round face.  I can't stand the girl that looks back out of the mirror at me.  I can't do anything to make her look acceptable.  I find myself feel like I'm staring at a dead-end of my life.  It feels like it's never going to get better, it's going to only get worse and I feel like a sitting duck just waiting for that to happen.

I did lab work yesterday. I really have to learn to do it on a different day.  I start getting the results back and the doctors aren't there to ease my mind.  Like, the kidney test that was higher than it ever has been before, not over the limit yet but close.  It's never been that high.   I did my research and it says it shouldn't fluctuate much at all.  So ... why is mine rising?   And, the pituitary tests are high.  Very high.  Like, potential growth on the gland high.  But ... there are other explanations for that as well but it doesn't make a girl feel good to think about a growth in my head all weekend until the doctor can get back to me.

Sadly, I fear another CT scan and another MRI is in my future.  At least I get to be injected with fun loopy drugs for the MRI portion.  Otherwise they won't be able to get me into that tube.   At least once those things are done we can rule out the growth/tumory things.   I'll just sit here and worry about my pituitary gland and my kidneys all weekend.  I want to do another kidney function test ASAP.  I want to know it was a fluke and is going to go back down.  

These are the kinds of things that haunt me all the time.  Everyone seems to think I can flip the switch and not think about this 24/7 but I can't.  I wish people could understand it.  I find myself biting my tongue at home, not wanting to mention anything because I can tell my husband is annoyed as hell at hearing about me being sick.  Don't want him to run away because it's all that we talk about. 

See ... and here at the beginning of all this my worries were about Kimonos and Muu Muus. Oh, if only things were that simple. 

Wednesday, August 14, 2013

Warning ... Rant/Vent/Whine Ahead

What sort of Roadsign would go with the above warning?  Would it be one of those Yellow Triangle signs? How about the one with the cliff and a person flying off of it?  Hmm, I should probably find one and then I can post an image of it at the top of entries like this, warning people away from what they don't want to read. 

I've put this entry off for a couple of days because I keep hearing someone say "Are you going to post another whiny blog entry?" and then I shy away but ... I'm not going to.  No one HAS to click on that link to come here.  Besides, my husband gave out my blog address to a man he met whose girlfriend was just diagnosed with this horrific illness and I don't want to sugar coat my life because people can't handle clicking away frmo what they don't want to read. 

Whew.  Where do I begin?  Perhaps you detect a note of hostility.  Well, yea.  I'm wound tight like a spring.  Sometimes, I want to bitch/moan/groan about my life and the shit that is going on with it but it's very apparent that people don't want to hear it.  When I've barely mentioned something, I can see people tune out.  That's fine ... but then I am subjected to listening to those same people talk about something important to them and I am dialed in and a participating member of the conversation because I'm not rude.

I'm sick.  No, I don't have something that's going to just disappear and be gone.  No, I am not making this up for attention.  I do so much to NOT get attention from it that I can't believe someone would think that's what is going on.  I am NOT going to get better from this.  I will get to a new kind of normal better, I'll be in remission, but I'll be afflicted with this for the rest of my life.  It could flare up at any time.  It could not flare up at all.  But, that's when I do get to that blissful thing called remission.  At the moment, I am SO not there yet.  I've barely started taking the medication to make my immune system figure out it's attacking the wrong things.  The medication makes me feel sick in of itself and will continue to do so until I get to the actual "treatment dose".  I am taking baby steps to get to that point.

I get dizzy when I turn my head sometimes, I feel like I am in a fog.  I have huge lesions inside my nose that scab over and HURT on top of the nose itself hurting from being inflamed, I can't rub my nose or I'll get a nose bleed, my face and sinuses hurt non-stop, my teeth hurt, my eyes are full of pressure and throb, my eyelid and eyebrow on the right side is now spasming all the time, I woke up this morning with both shoulders in agony, I went for a walk and then felt like I was going to collapse.  I cough and cough and cough at times, one minute my nose is dry and the next it's running like a sieve.   It feels like they have smashed my face with a sledgehammer, I have to watch my pee, I have to wipe everything down and use Purell like it's a lifesaver.   I become so fatigued at times I have to walk myself through the most basic of task, like walking. 

I am trying to do everything in my power to be like everyone else.  I could very easily call in sick when I don't feel up to par.  I have plenty of sick time and it would be perfectly acceptable to do so.  Even if I had to provide a doctors note for every hour I called in sick ... I could.  My doctor would document every time I needed to be out.  She understands, she would applaud me for taking the time to rest.  But, if I did that, I'd be gone a lot.  I am trying to adjust to how this all feels.  I am trying to get through this part which I hope will fade away to somewhat normalcy.  I don't want to be a burden.  I don't want to be talked about and whispered about.  I don't want people to make up their own ideas about why I am out.  After all, people don't believe me.  "You don't look sick" ... well, you don't have to LOOK sick to be sick.  Believe me, I wish outwardly would show how I feel on the inside because then I wouldn't have to feel like this.  But, I am trying.  I am trying so hard to not burden people with this. 

I've found some Facebook pages, Twitter pages, support forums, all involving Vasculitis or Wegener's Granulomatosis.  I've joined the Facebook groups, followed the people on Twitter who say they have it and joined the forums.  I regularly post and comment with them because it's people who actually KNOW.  Not that I am going to block out those around me, but there are some things I'll talk to the forum about that I won't bother other people with because they get it.  I've vented about the "You Don't Look Sick" thing.  Because, they truly understand.  I've talked with those who, like me, gained weight from our lovely steroids so we don't have that weight-droppin-sickly person look.  Trust me when I say I WISH I could have had that.  I have an overactive thyroid that also thinks it's not producing enough so ... my metabolism doesn't even know what to think.   My Endocrinologist (thyroid laduy) has NEVER seen test results like mine.  Nice, huh?

Sometimes, I feel like I am waging this battle alone.  I KNOW I'm not.  But, at the same time ... I don't want to burden my friends/family with constantly talking about it.  I find myself doing that because I have to pretend everything is fine 99% of the time that when I am talking with w friend/family member that wall comes down and I vent/whine.  I am sorry, those of you who constantly have to hear about this.  I am sorry I am always talking about it.  I promise to not always do that!!  I will try to be better.   So, a lot of the time, I'm sitting in my house, or sitting at work, researching and looking things up on how to live with this and try and have a long happy healthy life.  I've read many an article on it, and I read the articles posted in our Facebook groups, always looking and learning because I want to KNOW what's going to happen to me.  I want to be somewhat in control of a situation I have absolutely NO control over.  I've researched adoption options because I don't want to think I can't be a mommy someday.  I've looked into diet and cut out inflammatory foods (day 3 of no soda, bread, beans, processed sugar!), I drink lots and lots of water, I'm teaching myself to like teas, I've looked at some cookbooks for recipes dealing with autoimmune diseases.  I try to eat totally clean.  The only packaged item I bring is my greek yogurt and I've been researching the best one to eat there.  I found one with not a lot of sugar in it.  I cook vegetables, meat and always make a salad.  I am trying to manage our budget so that if I need to be out with this, I can and still make my payments.  I'm trying to run my life with this.  And, sometimes, it gets lonely.  But, that's my fault.  It's not for a lack of people.   

As much as people dismiss it, this is MY life now.  It's my life.  It is what it is.  It's not going away.  It's not going to be magically cured and I'll move on from this moment in time and let it fade into the rear view mirror of my life.  Everything has changed for me.  My entire outlook is different!  Things that I used to obsess over don't have the same amount of attraction to me.  I tend to care more about the important things.   I tend to also get more frustrated when I hear certain things.   My entire life has changed, but I have to remember that this happened to me and nto everyone else.  It's my issue, it's happening to me, and it's not the concern or worry of everyone else.  They don't give it a second thought, they don't NEED to.  I am supposed to take care of/monitor myself.  I am responsible for myself.  I need to speak up and say when something isn't right for me and not expect anyone else to. 

For those of you still hanging on for this part of the ride, welcome.  I don't know what lies up ahead.  I don't know how I'll react to anything that comes up ahead.  I apologize in advance if I snap at anyone, if I spontaneously cry on anyone, or ... if I somehow behave as a bad friend.  I forget sometimes that there is other life going on around me.  The entire world doesn't revolve around me and my illness. 

Alas, sometimes I want to bitch about my life too, you know?


I hate this. 

Tuesday, August 13, 2013

Brain Body Disconnect

I really wish my brain and my body would get on the same page.  Mentally, I want to joke around, laugh, and carry on like normal.  So, I do.  I find myself joking and laughing and then ... it's like someone upended my bucket of energy and poured it down the drain.  I sink down into my chair, I flop my head back into the cushion.  I start having vivid fantasies of my bed.  Or ... if I can't be in bed, at least I could be curled up in my fuzzy blanket on the couch.  I find myself daydreaming, and then doing a mental count of the numbers. 

Earlier, while walking up to the door of work, it happened again.  It was like I couldn't move my legs forward.  I had to tell myself, left ... right ... left.  It took concentration and every ounce of energy I had to move forward.  Thankfully, I sit for a living.  But, I still wish I was sitting in a different location.

I am missing the Relay For Life this weekend.  I really wanted to do it but I can't even wrap my mind around doing anything other than resting.  The medication makes me feel horrible, being away from the house makes me uncomfortable because when I want to just collapse, I can't.  So ... I've withdrawn my participation and that makes me feel like complete and total shite.  I did make a donation to the American Cancer Society, the amount I had pledged to raise.  I hadn't pledged much because my energy is non-existant. I wanted to make it a goal I could cover myself should something happen ... and it did. 

I am optimistic about my work schedule for the next few weeks.  I do have days off, I don't have too many super long shifts.  Actually, I only have a grand total of 1.  I even gave away 6 hours. I am comfortable with what I need.  I know what I need to have and I don't want to overdo it.  I know I need comp time but you know what?  I don't want to end up being sick trying to build up a bank to take time off.  I get 3 day weekends, perhaps I should just make an effort to have more of my weekends.

Ugh.  My head.  It's in a fog.  It hurts.  I get sharp, jolting pains that feel like they are coming from deep inside my brain trying to spring from my eyes.  It's like an electrical shock! I'm so tired.  Fatigue is a bitch.  Let me tell ya ... it's not a fun time. 

I just want to be at home.  Can I whine for a moment?  I just want to take a day and not do anything.  I want to take a day and be a patient.  I want to take time and not try to keep up with everyone else.  To not try and clean up, make dinner, go to work, run errands.  I just want to take a day and be able to rest.  I want to sleep for 24 hours, I want to lie on the couch and let everything rest.  I am trying too hard to do too many normal things.  I don't want to be that sick girl, yet ... I need a day every now and then to just be that sick girl and not be required to do what needs to be done. 

However, on the same note ... I love being domestic.  As much as I feel like it's a pain in the ass to get started, I am over the moon when it is done.  And, I have found a new love of cooking.  Everything always at least smells good.  I never know how it's gonna taste until I can get to work and get on my lunch break and heat it back up.  Someday, when I finally make it to dayshift sometime in my 40s I'll be able to cook dinner and sit down and eat it fresh and hot.  Only at least 7 more years to go! Right?

Blah.  I feel like poop.  I really can't wait to get to my bed.  Soon.  Its going to be soon. 

Monday, August 12, 2013

Exactly a year and a half

I started to unload some boxes last night.  We got a new dresser and moved the other one into the spare bedroom.  Eventually, it will hold linens and what not.  But, I started moving some boxes around and decided to open one.  It had books inside so I started to go through them.  I hadn't intended to keep ALL these books.  In fact, Dan had packed them and just threw all the books into boxes because he didn't see my purge/pack theory.  So, I started going through them and found a book I had purchased before the first of 2012.  It was a 5 year diary with a question on every day.  You are supposed to just answer the question every day and see how the answers change.  I opened it and started looking at the answers.  The answer on February 12th, 2012 caught my breath.

It talked about how I wished I wasn't sick.   I flipped forward a few days and saw the same theme over and over again.  I was still sick, not getting any better.  February was when this all started downhill for me. February12th is the first documented date of me being sick.

Today is August 12th, 2013.  It has been officially a year and a half.  A year and a half of feeling like I have the flu/cough/bloody noses/weird blood work/run down/sneezing/throbbing face pain/muffled ears ... need I go on? At least now I sit here writing this a year and a half later with a name for what's going on.   I don't have the questions I did before.  I know what I have and I am working on getting that long dreamed off remission where I might be able to achieve a "New Normal".  Wow.  A year and a half.  I always just sort of tossed around that time frame because that is how long it had felt and it truly has been that long.

I set goals to clean up my eating but then I didn't.  Today, I reaffirm those choices to myself.  I've completely packed my food for the day, allowing myself one and one only, little cheat.  A Grande Chai Tea Latte from Starbucks.  OMG.  Chai Tea Lattes where have you been all my life.  I cannot get enough.  For some reason, the carb content of this beverage is through the roof.  Haven't quite figured out how a beverage like that can be so full of carbs but ... soda is so I guess that explains it, right?  Anyway, that's my treat.   I have greek yogurt, no sugar added applesauce, some strawberries, paleo tuna (hard boiled egg, half an avocado and a can of tuna), chicken and potato leftovers, salad, a kind bar, an apple, celery, peanut butter, need I go on?  I packed a lot but I would like to have food on hand in case I get hungry.  It will keep me from tumbling off this wagon I so gingerly just got back onto.

I spoke in this blog about having a lack of control.  I am not in the drivers' seat of my own life.  I can control what hours I work, how big my paychecks are and now, I've remembered I can control what I eat.  I can control what goes into my body.  Clean eating is what it needs to be because, obviously, my body is malfunctioning on so many levels it's beyond being funny anymore.  I packed food and did dishes and laundry, tomorrow I will go grocery shopping and hopefully take Loki for a walk.  I have control over these things.  If Loki and I cannot walk far, we will do what we can.  Because, I still have control over that.  I don't HAVE to go several miles, I don't have to run, I don't have to meet a certain goal.  I can just do it.

I need to focus on what I do have control over.  I need to hold the reins tightly in my hands and not let anyone control that part.  I don't want to overdo it with overtime, so I am going to try and control it lightly.  I know what I need to have, and will do what I can to manage that.  Anything over that I end up with needs to go into my comp bank, so that I can build up my empty comp hours.  Because, days off are better than work days, always remember that.   If I adjust comfortably to the hours that I get paid for, then I will know I can do it.  Then, I will know that it's fine.

I need to remember that I have to focus on staying alive.  I need to keep the upper hand so that this disease that I have is something that I am living with, not something that I am dying from.  If I can stay alive, keep myself as healthy as I possibly can in this given situation,  then everything is going to be OK.  I think I will feel like life will be longer than it feels at the moment.

I've been sick and miserable for a year and a half.  I am ready to fight back to try and feel somewhat OK for the rest of my life.   If I can.

Saturday, August 10, 2013

You're Hot then you're cold ...

Did I get that song stuck in your head?  No?  Damn.  It was worth a shot.  Anyway, that's really how I feel today.  It's how I've felt for a couple days.  Feverish, so cold ... then hot and sweaty.  My face is tingling.  Literally the ball of my cheeks feels like there are tiny little ants dancing around inside it.  Then it feels like someone is behind my eye with a pick axe, hacking away.  My head feels like it's being squeezed in a vice, my stomach can't tell me it's hungry, I need to just eat periodically to remind it that I must have nourishment.  My whole body feels weak at times and ... the newest thing ... I feel winded when I talk.  Like, normal short sentences cause me to run out of air.  I feel like there is that usual band around my chest but I've never actually run out of air while speaking, unless I was rambling and trying to say something on one breath and running out. 
I'm gonna keep an eye on it.  Nothing to go rushing over to the doctor with yet. 

I doubt I could do any of the things that I did yesterday.  It is taking absolutely everything I have to maintain a positive attitude today.  Positive meaning sitting here and being normal and friendly and not letting the world know I want to go home and curl up in bed.  I hope this lets up. I have a lot of chores to get done tomorrow.

My endocrinologst called to speak to me about the absolutely puzzling lab results I had again.  (I just love how I keep stumping each and every doctor I go to!) She asked if I had these symptoms of hyperthyroid or these symptoms of hypothyroid.  Well, wouldn't you know it?  I have a bit of each of them.  Seriously! It's like my wiring system inside of me is completely jacked up.  Nothing is working like it should.  Unfortunately, my electrician of a hubby cannot fix this wiring problem.  

I have never paid so much attention to the process of going to the bathroom.  I've never taken stock in amount/color/feeling.  Yes, I'm oversharing.  This is my bloggy journal thing, I can do what I want.  Anyway, I've never paid much attention.  I've always been prone to UTIs.  It's something about the makeup of my parts.  So, I would notice when that was happening.  But, now ... now I have to see if enough is being produced and that it's the right color.  Apparently, I had a UTI and felt nothing. It was discovered by my urine tests.  Weird. 

I hate getting up and doing an inventory.  No pain in the joints, good.  Eyes feel alright, good.  Oops ... feeling like a bus hit me again.  Damnit.  Oh, there's my face hurting, lovely. It really sucks.  Someday I won't have to do this in the mornings.  Someday I won't think about it constantly.  I'll think about it but not like every waking minute.

I'm starting to get whiny here.  Dang it.  I am trying so hard to keep the smile on my face but I really and truly feel like I have the flu.  This SUCKS! The rest of the world gets to get the flu and go home because they honest-to-goodness have the flu and are contagious and such.  I have to sit here and keep pushing forward in life, working 10plus hours a day, 4plus days a week, trying to be a normal functioning human.  I wish I was rich enough to be able to face this without the addition of working.   I purchased a Powerball ticket but I wasn't one of those lucky ones.

I want normalcy.  I want to complain that I have to work when I want to go have fun.  I want to complain that I didn't get to sit at the position I wanted to.  I want to complain that the world isn't fair because things didn't go the way I wanted them too.  I didn't get to go to that movie or on a date.  I didn't get to get that day off so that I could do this one thing or another. 

I want that normal.  I want life to just be normal.  I want to think the insignificant is super important again.  I want to overreact about dumb shit.  I want to have a total meltdown and slam things down because I'm just annoyed.  You'd think I'd be able to do that, but I can't.  I now have a stigma on me.  I now have to be careful what I do/say/act because it will all be pointed out that I am not handling myself well.  I will be reminded that if I cannot behave or act normally that I should not be here, I should take my time and be at home.

Hey, I'm cold again.  I am shivery and have those chills again.  I had my sweatshirt on too.  Yay, fever, welcome back.  It's not like I missed you or anything.

I can do this.  I can do this.  It's time to start chanting.  I think I can I think I can I think I can. 

Friday, August 9, 2013

Don't stop moving!

I'm sick. Yea, yea, you've all heard it before. Blah blah blah. Today wasn't a good day for me physically. I managed to keep it under wraps and hide it from everyone. I had a short shift and then it was off to run errands.
Left work and hopped on the freeway to head down to the bank in Rohnert Park, signed some papers and then popped over to the Goodwill Drop off and got the bags out of the back of my truck, then it was over to Petco for wet and dry dog food and wet cat food. After Petco I made the decision to skip Costco and was back to Santa Rosa to get my groceries at Raleys.
Loaded up, I headed home. I was feelin absolutely awful. But I couldn't stop. Dan arrived right as I got home and helped me unload the truck. I put groceries away, got the chicken marinating, went outside and scooped up dog poop from the front yard, came in and put away the dog and cat food. I vacuumed the floors, emptied the cat box, refilled it, took out the recycling, brought the trash cans in from the street. I tossed in some laundry, folded others, made a salad, steamed some green beans, cooked the chicken, plated it up, swapped more laundry. Then we ate. I fed the animals and am now waiting on the laundry again.
All this was done with a fever that I think is finally broken. I think. I don't exactly have the energy to get up and check.
I knew I could possibly be overdoing it but I knew if I kept moving I could get some more stuff done. 
I've been so frustrated being unable to do stuff. I'm regretting doing SO much but sometimes we have to beat ourselves up to get things done. Now if my brain and body would cooperate and go to sleep I'd be a very happy girl. 
Loki's already out, JD just curled up with a flop on my head and Dans been snoring for over an hour. I'd be lying if I said I wasn't jealous. 
I made an appointment with another one of my lovely doctors for Thursday. I'm not too thrilled about this appointment and what is going to ensue but, it is necessary in my current predicament to proceed this route. I also get to be back on the every two week Thyroid bloodwork again because apparently my levels are completely out of whack and not in a direction that can be corrected yet. My thyroid hormone creator thinks my thyroid is asleep yet my thyroid is high functioning and rocking on. Could be from radiation, could be Hashimoto's being funky, could be Boris poking at my thyroid too. 
My body is an anomaly.  My doctor couldn't  find anyone with a plasmacytoma and Wegeners. Two highly rare conditions in one person, especially someone young like me. Add in the Hashimoto's and I'm just malfunctioning on all levels. 
I can't make my claims about how healthy I am anymore. Just last night Otis and I were discussing Teflon non-stick pans and I said "I've cooked with them my whole life and I'm perfectly fine ... Oh wait..." And it dawned on me that I can't say that anymore.
Now I'm that sick person.
I've found several groups and pages on Facebook dealing with Vasculitis and Wegener's. I've talked with several nice people and they have reminded me that my life will never be the same. I will never be that same girl anymore. Even if I can get back to getting in shape, it will be much slower, much longer. 
As long as I am alive, it can be as slow going as it wants. 
Well, I really better try to sleep!! Goodnight beautiful people. 

Thursday, August 8, 2013

After all, I am a girl

II may be shaped like an Oompa Loompa at the moment, but I am a girl. I'm female. I like pretty things, I love dresses and bows and glitter and sparkles. I could spend millions on shoes and clothes. What I love most of all? Beauty appointments.
I love pedicures, getting my nails done, massages, facials, waxing and best of all? Hair! I never feel as pretty as I do when I have my hair done.  It's the only time my hair truly looks fabulous and I think I could have that awesome hair like the girls in magazines. However, it's usually only that first day or two that has that kickass look because I suck at styling it myself.
I never learned to be a proper girl. I'm not adept at applying makeup. I'm not good with a flat iron or curling iron. I'm just not good at the application of being a girl. I want to be. I want to look pretty. I want to not be the way that I am.
I'm stuck with my face. That won't change. My nose is too pointy but ill accept it because any Wegs patient knows that could change at any time and given how much it hurts all the time, who knows if that's in my future. My lips are too thin, my face far too round (for now I hope). I'm just not naturally pretty. So, I wish I could at least make what I have sparkle!! 
Where am I going with this long diatribe? 
Well, today, right this moment I am getting my hair done. The color is sinking in as we speak. When the color is done, inches will be shed and I will for a moment feel beautiful and pretty. I will walk taller and smile more because for today, I won't feel like a monster. I won't feel like Jabba the Hutt.  I won't feel like that Schlub that I see in the mirror and for that I will be so grateful. 
This last year and a half has been a trial of my spirit. Just when I have hope, it would be dashed. I've been mistreated, misquoted, misdiagnosed, ignored, gawked at, questioned, not believed, etc. I've been sick for a very long time. Everything surrounds this and for today, it won't. Today I will feel/look like a normal person.
Just ignore the dark circles under my eyes, please see beyond the moon face, the double chin, the pregnant looking belly. Please see my hair, the girl I am. I don't want to be the sick girl.
One other lil rant, if I may. I've noticed that I'm silently being judged. No, this isn't paranoia. I don't feels there's any other explanation for it. Someone I know will literally look me over while talking to me. I can see their eyes travel down to the less attractive areas of me and then back. I can see their thoughts "yay I look better than you!" 
I hope in their intense insecurity they realize the big picture. In essence, I've been in a fight for my life.  I was derailed off my fitness train and gained weight back. I've faced the C-word and could very well face it again. I've been diagnosed with a disease that could beat me in this battle and I could die. 
I hope they will be able to sleep good at night knowing that while I fought for my life, they looked better than me. 
I've seen others look at me. It's not the same gleam in their eyes. This is the look of vanity, and ill let them have it. 
Because, what I've been through and continue to go through has taught me about life, about people, about myself. It's taught me what matters.
So, I will hold my head high today, toss my new hair and smile for reals. It won't be the forced smile I wear as a cape against the world. I will feel pretty. I may actually even look that way! 
Because I am a girl, after all.

Wednesday, August 7, 2013

Life is about lessons

I was reading the Wegener's forum today and an old post had been revisited.  It was about what everyone had learned since their diagnosis.  While my actual, official, 100% for-real diagnosis is about a week old I am not sure much has been learned in that time but, I've had this disease floating around in my peripheral since January so there have been many-a-lesson learned in that time. 

Where would I even begin?

First and foremost, doctors aren't always 100% knowledgable on everything.  There are certain specialties, and some never, ever heard of what I have.  I've seen many a doctor stare back at me blankly when it's mentioned.  Also, even if they've heard of it, specialize in what would deal with it, they aren't always completely informed on how to handle it.  Case in point, my first rheumatologist didn't want to diagnose me because I wasn't dying.  Glad I moved on so that I didn't have to wait til that point to finally have a diagnosis.

Secondly, I've been reminded, as I was already taught several times, that life is wholly unpredictable.  You can eat healthy, exercise, work hard, be a good person and still something bad can happen, or your life can change directions without notice.  I had adopted a Paleo lifestyle because it had been touted as the best way to eat and that people had been cured of lifelong illnesses ... and that was when mine popped up and no, Paleo living will not cure what I have.  I do have a gluten intolerance so inflammatory foods are a no-no.  (I ate bread today, I'm not doing well with cutting it out!!!)

Death can and will happen to every single one of us.  No amount of driving perfectly, eating right, or whatever can keep it at bay forever.  And for me, I can't NOT think about that.  Every twinge, pain, cough, sneeze, ... it makes me wonder if I am going to flare back up, be worse, shoved in a hospital, etc.  I am trying to learn not to think of that, but it lingers in the back of my mind daily.

It is important to accept what's happening and LIVE with it.  I can't lock myself in a room and hide.  Well, I could but really what good would that do, it's not going to go away.  Acceptance!  It's how this blog started.  Accepting that I was a cancer patient just like the generations before me.  And now, I am accepting my life as a Weggie, a patient with vasculitis, a sufferer of Wegener's Granulomatosis.  A lifelong, life threatening condition that I will have to manage and maintain.

Little things mean everything!!! A good book, some writing time, a moment to sit in the silence, birds flying in the sky, fluffy white clouds on a vibrant blue sky, the bold green of grass, the popping color of flowers.  The song of crickets at night in the dark, twinkling stars hanging against a colorless black sky.  A huge moon coming up over the horizon.  The smell of flowers, grass, life in the air (except marijuana *GAG*).  The scent of a fresh rain, the sound of rain on the glass, on the roof, on the sidewalks.  Waves crashing against a beaten smooth shore, the flapping sound of my puppy's paws in the wet sand.  Loki's huge gigantic ears, his sweet smile, his fluffy peach butt, puppy cuddles, my cat purring in my ear, and yes ... even the husband snoring. 

Even the best laid plans can be changed.  Don't put things off for tomorrow because what you put off may not be possible tomorrow ... or tomorrow won't come.  Live for today.  Live for the moment.  Try not to let the darkness swallow you.  It's easy to sink into the sadness that lurks, waiting for a weak moment.  Don't let it get to you. 

I've learned that I didn't think I could celebrate being diagnosed with a life threatening illness, but I did.  When you're sick for as long as I have been and everyone has been scratching their head or denying what was going on ... it's easy to be over the moon and happy to have a name to associate with what's going on. I now have my support forum I've found, I can run things by them, by my doctor, etc and not feel like I'm talking to a brick wall.  I have my family and friends whom I need to make more of an effort to be around.  When I'm alone, I can feel the darkness creeping up behind me, trying to engulf me.  I need to get outside and walk with my doggy more.  He loves it, I love it.  It's good for both of us.

I let my overtime get a wee bit out of control and I need to reel it in, focusing on what I actually need, and not taking what I don't.  Right now, I do need to maintain at least 25 hours. It's a lot I know, but I don't need anymore than that and I find myself with more than that.  I need to make a conscious effort to stay away from that.  I know, I've said this all before.  It's a learning process, I latched on to what I know, what I could control.  I felt like I was in control when I was able to get lots of hours.  I had control of SOMETHING because I am not in the driver's seat with life right now.  You know? But, I am in control of it and I need to take care of it. 

There have been many lessons I've learned in recent months, and there are many more still to be learned.  I will take them as they come and use them for my life.  Hopefully, there's still a lot left to live. 

Tuesday, August 6, 2013

I miss the rain

When I first started to get really sick at the end of the year, it was winter.  There was rain.  Oh rain, how I love thee.  Don't get me wrong, I love to be outside when it's not raining, walking, hiking, whatever. But, there is something cozy and comforting about being confined to the couch when it's raining.  I don't have to go out driving in it, I don't have to try and dart between raindrops, I don't have to remember to bring an umbrella... and, I get to listen to it. 

I love the sound of the rain.  LOVE IT! I could listen to noise machines but it's just not the same.  When I was home during the rain, I would prop open the door and smell it too.  Come on, you know what that wonderful fresh smell is.  Truthfully probably all the oil in the road, etc but it still smells fresh and wonderful.  How I miss these smells/sounds!

The little things are what make me happy.  In fact, I was at peace last night just sitting in my living room in the silence.  The dog was chewing on his bone at the end of the couch and it was just peaceful.  I had the small can lights on that are over the fireplace and I didn't want to move.  Unfortunately, it wasn't completely perfect because I was dealing with the wonderful side effects of the new medication.

Let's kill off my immune system, shall we?  It's what's trying to kill me and I don't want to die.   This is a good thing.  But, in the meantime, I'll feel like ass. I have learned so much about the human body.  When we get a cold/flu, the reason we feel so crappy is our immune system working to kill off the bad cooties.  Right now, I feel so bad because my immune system is constantly working and now it's working to try and fight back against the medication.  So it's a wonderful party inside my body ... not. 

It's quite apparent to me that some around me either don't believe me or ... I don't know.  But, I have what I have, I can't change it.  It's not going to go away. I would give ANYTHING to be as healthy as them and save my sick/comp/vacation time.  I'd give anything to make it through my shift without wishing I was curled up in bed in the safety of my home.  But, this is what it is ... I wish people wouldn't assume/question/think that they know it all.  Ask me if you think there is something up.  Or, if you don't believe me, keep your eye rolling, head shaking, disbelieving looks to yourself.  Vent about me all you want when I am gone.  I don't really give a shit.  Pardon my french.

I have a disease that has the potential to KILL me.  You can deal with me occasionally being sick for periods of time and having to compensate for that, even though me being gone would do absolutely nothing to affect you in anyway.  Or ... you can deal with me being permanently gone when I am dead.  Take your pick.  Seriously, I am not doing this to personally slight anyone in any way.

Wow, sort of changed gears on that one didn't I?  Well, I was writing about the rain because I was trying to focus on the positive things, the things that make me happy.  But, the anger from recent events swelled back up inside me and I had to let it out.  It happens. I'm not in the position to verbally vent at the moment so I will write it here.

Yes, this is another whiny-ish blog entry, Erick. 

I sound angry and it sounds like I am surrounded by uncooperative people. I'm not.  For the most part, I have a very supportive group of friends/family and even some co-workers.  However, it's the ones who aren't that are the most noticeable sometimes, you know? But, I don't care.  I don't care anymore.  I want to be alive. I want to live and see more of what life has to offer.  I can't be bothered with the nonsense of others at the moment.  So, I won't.

Here's to the little things.  My awesome black and white victorian looking curtains that hubby purchased and hung for me last night.  The beautiful gray black out curtains he hung in the bedroom.  The washer and dryer are hooked up at home now so I no longer have to go to the dreaded laundromat! The home we purchased that will slowly but surely be done so hubby doesn't have to constantly work on it while trying to run a complicated job site in San Francisco.  Life is good outside of this bubble of what's going on with me.  I want to enjoy it. 

I will keep swallowing pills in increasing doses until my immunity is no more.  I will do whatever they ask of me, hop through hoops, get jabbed with needles, go to countless doctor's appts, whatever.  I will follow the directions so that I can stay alive. 

Because I miss the rain and want to see it rain again.

Saturday, August 3, 2013

I'm broken

I think I am broken.  That's the best explanation of what's going on.  I cannot find anything on the internet that explains my recent Thyroid tests.  My TSH is sky high but, so is my thyroid which doesn't add up.  TSH is usually high when the thyroid is under producing. What the heck is going on?

Oh well, my thyroid has been a pain in the rump this entire time so I am not worried about it at all.  I've got my meds sitting at home waiting for the last of my blood work to come back and then I'll start taking baby steps to my dosage and be on my road to remission.  Oh you have no idea how I can't wait.  It feels like life isn't a blurred haze in front of me anymore.  Soon, the fog will lift and I will be living a normal life again.

There are some definite lifestyle changes and things to consider when all this starts to go down.  No more bread, no more beans.  Bread/Wheat/Gluten is something I've always had a reaction to, and beans aren't easy on my system either.  So away they go.  Inflammatory foods are a no-no for my body from now on.  No soda.  Only water. I'm going to learn to drink tea so that I can have something that gives me a little boost on those tired days.  A trusted friend has assured me it's an acquired taste and I will be able to like it someday because she once hated it as well.   Let's re-cap, shall we?

1 - No Wheat/Bread/Gluten
2 - No Beans
3 - No Soda
4 - No Processed Sugar
5 - 1 Gallon o' Water a day

My medication is a once-a-week dosage, so I'll probably feel a bit off and gross for a day or two every time I take it.  It's what I've been told by others who take Methotrexate for their Wegener's.   I start at a small dose and then increase from there until I am on the treatment dose.  If I don't tolerate the oral method, I'll be switched over to weekly injections so that it bypasses the stomach.   This is the next two years of my life. 
No pregnancies for two years so I have started considering adoption.  With adoption, I won't have to worry about losing weight and then gaining it again.  ( I know, dumb thoughts but I'm looking at the big picture) and ... I won't be putting any extra stress on my kidneys, not giving them any reason to get wonky before they need to.  Besides, there are so many babies/toddlers/kids out there who need homes.

I will be switching over to an IUD, guaranteeing my birth control so that I won't forget, screw up and get pregnant.  Woops.  My fear is that it will be painful.  We've already established that I don't like pain.  I'm trying to keep the procedures to a minimum for awhile.

Dayshift is becoming a sad daydream now.  After speaking with one of the supes, I am convinced I'm stuck on nights for the next several years.  The doctor talked of moving me to dayshift temporarily, but ... then it would be right back here.  It's time to just deal with it.  I'm going to be on nights for twenty years.  Why do you say that?
Well, I'm almost been on nights for 12 years.   I can easily see being stuck on my shift for another 8 years.   There's always going to be someone that's retiring right?  Ugh.

Let's focus on one thing at a time, Nik.   Being and staying healthy for awhile.  Moving on past feeling blah and getting back to losing this godforsaken weight, getting things paid down, and working towards trying to have some sort of future.