Wednesday, July 31, 2013

Finally, Finally confirmed ...

It's been one year and 6ish months.  It's been over eight months of non stop blah/sick/gross/aggravating doctor visits.  But, now ... I have been re-diagnosed with .....

Wegener's Granulomatosis or Granulomatosis with Polyangitis.

I feel like I've said that before.  Oh yea, I have.  I was diagnosed, then my old rheumatologist read the pathologist report and said "No, you don't".  Then, symptoms progressed and he said "OK, I think yo udo but I don't know if I want to really go ahead with this right now." and then I found my dream rheumatologist and she actually did some serious leg work and CALLED the Stanford Pathologist to talk with them about the findings and she says she has all the pieces she needs to go ahead with treating my disease so I can live my life again.

I feel like a giant weight has been lifted off my brain.  Finally.  Someone knows what's going on and I can move forward and maybe, just maybe, feel like a normal person again.  I know it won't be a forever feeling but at least it's going to be for awhile right?  Maybe I'll never flare back up again.  Maybe I'll have several good years before things go sideways.  The point is ... I know for sure, 100% this time and I will treat it, and I will live with it.

Sure, there's always those stresses that come with being diagnosed with an untreatable condition.  The what ifs that will constantly swirl around in the back of my mind every time something seems not right but ... it's in my chart.  If I get rushed to the ER unconscious by ambulance or something, when they pull up my chart they will SEE what's going on.  I won't need to have someone there to 'splain!  Now, let's just do what the doctor says and make sure I don't end up being rushed there by ambulance.

I'm still angry about things from my earlier post but, then I got the email and call from the doctor right after.  It was a bit of bad and good news all at the same time.  "You have this horrible incurable disease" YAY!  Right?  But, it's not that I have a disease that I am happy about, it's that finally I have all the T's crossed and I's dotted in my medical file.  It's that I finally have the official final word about what is going on and a doctor willing to do what it takes to make me feel better.

Despite everything, I am happy with what they said.  I know it's not ideal.  Dan was hoping they would say they couldn't figure it out and it was nothing and not to worry, etc.  But, I knew there was something wrong, my bloodwork was saying there was a problem and my body was telling me I wasn't normal.  I knew there would be some sort of diagnosis at the end of all this and not necessarily the originally thought disease.

I was right.

I know my body.  I know how I was feeling.  I know how I am feeling now.  The two are completely different.  I was feeling fantastic and then ............................. not.  My brain wants to feel good and get crazy motivated to do things and then I collapse in exhaustion feeling sick because my body doesn't agree.

Soon, I'll do my medications to get into remission and maybe, just maybe, get back to losing weight and feeling good again.  I still have goals.  Half Dome, actually running an entire 5K or 10K.  Not sure I ever want to attempt a half marathon.  But to be able to run a 5k without walking would make me happy.  I want to have an LBD (little black dress).  I want to be healthy and active and get back to hiking and doing things all the time. 

I want my life back.  Soon, I should have it. Right?  Hopefully? 

This is a giant leap in the right direction!

Can Anyone Hear Me?

Because I have been told "I don't pay attention when you talk, you know that"

And quite honestly, with everything else I've been told lately, it really seems as if I am an insignificant speck on the radar. 

I'm over it.   I wrote a shit ton of stuff here and deleted it because I can't post it.  I just wanted to vent and I did.  I don't feel any better because it doesn't erase what was said. 

But, at least I vented, right? Don't worry.  You aren't missing much.

Tuesday, July 30, 2013

Peek-A-Boo

I haven't been updating.  Not much to report.  Didn't really want to just come here and vent.  Lots of stuff in my psyche, angrying me, that I can't vent about in such a public forum anyway so it wouldn't have done me any good to vent about it.  You know, more trouble than good?
New doctor called me today.  She has a treatment plan in mind, is waiting on a call from the Stanford Pathologist and my oncologist but then she'll be ready to get this ball rolling.  It makes me hopeful.  In 4 days she has done more for me than most of my specialists combined have done in almost 8 months.  It's a good thing and I am feeling positive.
Physically? I am creeping steadily downhill.  My sinuses and face had hurt A LOT.  My nose especially.  The lump or whatever it is that pushes on the underside of my eye must be swelling back up because that distortion or black spot in my vision is getting bigger again.  My eyes hurt.  My ears plug up.  I am coughing more again.
It's all coming back a little more every day. 
It's hard to keep my head up.  It's hard to keep smiling.  I have to be friendly and cordial to someone I can't stand which is exhausting.  I have to listen to things that drive me bonkers/nuts/crazy all the time.  I have to try not to talk about how I feel like hell.  I don't want to whine, but then again, I want to whine!!! I hate this. 
I would love to just stay home til this is figured out.  I really would because doing this, my job, is SO hard while feeling like you have the flu, or when everything hurts.  But, I'm not allowed to say that am I? Nope.  Gotta keep it quiet.
I asked a question, out of curiousity and hope, and was basically blasted and treated quite rudely about it and I am not quite sure what to think.  It's made me beyond angry, less helpful, and ... honestly, so over everything it's not even funny.
See, here I go again, just venty venty venty.  I don't want to do this.  I don't want to have to whine about something. 
I don't feel good.  I just want to go home and crawl into bed. 
Nope, I work nights.  No bedtime for 6 more hours or so.
Oh, bed, how I miss you!

Thursday, July 25, 2013

Sucker Punch

I got a new doctor today. I now have to go down to San Rafael but, it's worth the 40 minute drive. I felt a million times more comfortable and that the doctor was listening. She wrote notes, looked at my chart and said "It sounds like you have Wegener's" and looked at all that had been going on and said no alternative diagnosis was jumping out at her.
She also said a needle biopsy of my lung doesn't seem to her to be enough to show the big picture of a blood vessel. 
Long story short, this was a MUCH different appointment than I've been having. I feel like I will have answers.
She's gonna consult my team of doctors and say "Do we continue to biopsy/test or do we call it Wegener's and start treating her?" She also mentioned the less toxic medications that I had read about. It just felt better.
Alas, during all this we had been discussing life insurance. I'm not sure ill be able to get any but we are still gonna try.
It's a sucker punch to the stomach to think about life insurance. Obviously, everyone goes about life insurance on the "what if". Things happen. Life is unpredictable. Car accidents, Mother Nature, etc.
When you are talking life insurance after having a cancerous gland removed and in the midst of a potentially fatal autoimmune disease ... Shopping for life insurance becomes more a question of "when". It's not an easy thing to stomach.
I could live decades more of my life. I'm not saying I'm gonna die tomorrow. But I'm not in the drivers' seat anymore. I'm just a navigator, suggesting routes and trying to stay alive. Boris has the wheel and he could decide to overcome me. You just never know.
Life insurance. If you don't have it, get it. Life throws a curve ball sometimes. I never imagined I'd be in the position I am  in. Never in million years. I know I'd always joke about my family history but... Actually being in the middle of all this has been an eye opener.
Hopefully, if we do get qualified, it will end up being a waste of money, never needed for many many many years. 
I just don't want to think about that yet.

Wednesday, July 24, 2013

Motivated and Frustrated

It's 9 o' clock ish.  I was already in bed.  I was ready for sleep around 8pm.  How sad is that?  However, Loki left the room, I had to get up and lock the doors, I needed a glass of water and now here I sit on the couch in the relative silence of the house.  
Why didn't I just go right back to bed?
I'm finishing my glass of water.  I'm letting Loki have a few more minutes of playing with his chewie bone before he goes in his bed as well.  Besides, I wanted to take a few moments and try to dump out the contents of my head. 
I did a lot today.  I am feeling it for sure.  I woke up and tossed all the ingredients for dinner into the crock pot, cleaned up a mess Loki made and then took a shower.  After my shower, I realized that there was a LOT of laundry in the baskets.  Dan said he was going to get the dryer hooked up this week but part of me felt that one last trip to the laundromat was in order so that I wouldn't be spending two days trying to get through this mountain of laundry. 
So, I hauled it all down there and had the place to myself for awhile and then had two really weird ladies come in.  I realize how anti-social and rude I am when I am at the laundromat.  I don't want to make small talk with people there.  I don't want to talk!  Leave me alone!!! Then, I leave feeling guilty but sometimes you just get a vibe from people, you know? Besides, working where I do, seeing people's arrest photos all the time ... it makes you cautious when people "look familiar".  You wonder WHY they look familiar, you know?
Came home, ate lunch, put laundry away, laid down with Loki on the bed for a few minutes because, sadly, doing laundry and putting it away takes a LOT out of me.  Seriously, ZERO energy.  
Dan came home and it was on!  He went from telling me it was a bad night to take off because he had to go over his plans for the job.  I told him I was perfectly fine sitting on the couch and entertaining myself - to us moving furniture around. We moved the dresser into the bedroom at the foot of the bed instead of the short cabinet we had there.  We took the short cabinet outside ... dumped all the drawers on the bed for the both of us to sort through clothes and purge.  Dan brought me our old shoe rack so I also went through and tidied up our shoes.  I sorted my clothes, put them away, tossed some out, put others in the donate pile, reorganized the closet .. and then Dan decided to bring that short cabinet BACK inside and put it in the cat room.  We'd put their food on THAT and he could use the big table they had for his plan reading. 
The lifting and moving made me miss working out SO bad.  I don't know.  I love the feeling of being able to lift things.  I love feeling my muscles stretch and pull.  And then, while sorting through my clothes, I came across all my workout clothes.  
You'd think it was a pile of old photographs of my parents or something.  It just punched me in the chest how far I have fallen.  I miss my routine, I miss the drenched in sweat, weak from exhaustion, unable-to-move feeling after a hard workout and want to get back to that SO bad.  I feel like the biggest loser because I can't DO anything.  I try.  Every time I do something I get dizzy, and then there's this energy dump and it's like "SIT DOWN OR YOU'LL COLLAPSE" feeling that I have never had before. 
I walked Loki down to the end of Greenleaf and back.  I had planned on then headed north on Willowside a little bit but ... it was HOT out and Loki was looking a little too hot and I was feeling exhausted so we both came back home.  Maybe tomorrow, as the evening comes, I can take him up Willowside a little.  I want to try and walk every day, adding more and more when I can.  I need to do something.  The being so limited is making me more and more depressed everyday.  
I want to work out again.  I want to be losing weight again.  I am so tired of being this gigantic blimp of a person.  I am so tired of being "that girl", the sick one, the fat one.  I want to crawl into a hole whenever people look at me.  Whenever they look at my body I want to disappear. 
Tomorrow, I go down to Kaiser San Rafael to start the second opinion process with a rheumatologist down there.  I have a knot in my stomach because I know they will weigh me.  I worry that he is a friend of my current rheumatologist and that I will still feel like I am getting the run around. 
Yet, I am also slightly hopeful that he'll start moving in the right direction, you know? 
My life changed in December.  Everything sort of stopped ... Sure, some things kept going but it was like my progress was derailed.  Everything I thought was important slowly faded away.  Like the people in the photo in Back to the Future.  And then, when they said the word Cancer.  Yea, well that made everything flip upside down.  
And ... I'll confess.  There's some swelling in my neck, around the parotid salivary gland (seriously how do I know all these medical terms now) that just makes me nervous.  It could be any number of things, I mean, there is a lymph node there.  But, I've never had these things in my neck until that submandibular gland went haywire.  And that was rare.  There's NO way that now I'll have a plasmacytoma on the parotid gland.  I mean, that would just be too freaky.  
Then again, the pessimist in me thinks now there will be a plasmacytoma there.  This time I wouldn't get off easy with some radiation.  It would be IV Chemo time.  But, on the upside, would cancer chemo also suppress my immune system and slow down Boris?  That's something to ponder. 
I'll have the doc tomorrow feel around my neck.  If he's not worried, then I won't be worried.  However, last year, the ENT wasn't worried about what was in my neck.  Even as late as the day of my surgery, my ENT wasn't worried about it.  He figured they were looking for granulomas for my autoimmune-ness.  He wasn't thinking CANCER.  Maybe doctors don't know anything. 
I sure feel like I know more about Wegener's than the doctors I've talked to.  
So there you have it.  I'm motivated to want to lose weight.  
And, I'm frustrated because when I try I crumble and end up feeling worse on the couch.  
Someday, I'll look back on this time and it will be a distant memory. 
Someday. 

Monday, July 22, 2013

I am so excited!

The ROYAL BABY IS HERE!  I am over the moon!  Of course, I'm always excited when there are baby announcements because, come on, babies are exciting!! A new life.  In this case, the future KING of England.  It's not every day the King is born, OK? I am just crazy excited and even teared up a little watching the announcement being hung on the easel outside of Buckingham Palace. 
I adore Catherine Middleton.  She is a beautiful, graceful example to little girls everywhere.  She carries herself with confidence, style, and as I said, grace.  She is smiling and polite.  She dresses feminine and just has a strong aura of self possession.  Not to mention, this is my own fairy tale.  I have followed it from the minute they announced that Prince William had a girlfriend.  I've loved it.  The engagement, the wedding and now the baby.  It's a fairy tale!!!
It's also distracted me from the horrific depression that is raining down on my head like acid rain.  It was a slice of happiness.  I got caught up in the excitement and happiness and giddiness of the Britsh people. 
I had been hoping for a little girl because I am Princess-obsessed! I love Princesses.  I don't care.  I don't care if the Prince's resuce them.  I am old fashioned in that I still daydream about someone being a Knight in Shining Armor.  Yes, my husband is my knight but ... everyone wants someone to hold them up like that you know?  I'm not a feminist, I've never claimed to be. 
Congratulations, Duke and Duchess of Cambridge.  I don't know you personally but, from the excellent normalness of your relationship I think you will be amazing parents.  I only wish Princess Diana had been here to see her firstborn grandchild.
Thank you both for distracting me from the sadness that is threatening to engulf me.  Thank you for letting me feel the excitement of this new chapter of your life. 
Now, it's back to normal life.  Feeling like a giant oompa loompa, JJabba the Hut, Barney, a hippo ... etc etc. I want to scream right now. 
I wish I could get my hands on happiness again. 

Sunday, July 21, 2013

Slight desperation

It's 9:30 and I am in bed. As I start to write this, my eyelids weigh 365 tons. Imaginary toothpicks fortified with imaginary extra strength floss are holding up my lids so that I can purge the noggin before the work week starts back up again.
I'm exhausted. No, I didnt run like everyone else, no workouts where sweat streamed down my face in rivulets, stinging my eyes, curling the baby hairs on my forehead. I barely walked while we were at the beach earlier. Nope, I'm exhausted because its 9:30 and I'm not asleep yet.
I need a new lifestyle so much it hurts. I can't take it anymore. 
First, I must acknowledge the good. Today was nice. I went to Costco and Trader Joes. I came home and tossed the bad items from the fridge and put away the new. Dan worked in the garage and then we took Baby Loki to Bodega Bay where he got to run in the low tide off Spud Point Marina. He even ran out in the water with Dan and we learned he swims like a champ. He was on leash the whole time so I was TOO worried. 
Ok, I was a bit of a worrier on shore. But he was having a ball with Daddy. I watched from shore.
Afterwards, we walked up the road to Spud Point Crab Company and had some Clam Chowder. Loki was dragging when we got back in the truck and passed out for the ride home.
The salt air and cool water on my toes rejuvenated my soul, I felt peaceful. I was able to ignore the sore throat, the jolting nose pain, the jaw pain, my stomachache, and the zero energy. I didnt think about being sick, about work, about money. I lived in the moment.
Now I'm tucked in bed, trying not to take inventory of what's wrong. I don't want to think about how I go back to being alone, to fighting the pain everyday, to fighting to stay awake til 1:30am everyday. 
I have a slight desperation that something's gotta give. My husband told a girl that during all this I've remained positive, still smiling and that I keep working. 
I admitted when she walked away that I am not always positive, that I smile to mask my pain and there are days I absolutely dread every minute of work because I feel so awful.  I explained that I have very dark moments. VERY dark moments. Dan chalked it up to Prednisone side effects.
I wish.
I get upset because I'm left out of everything because of this illness and my new physical limitations.  I get upset because I never feel normal. I get upset because I'm not bettering myself. I get upset because I feel like I'm not a contributing member of society or my marriage. I get upset because I want people to look upon me positively, with pride and awe. Instead, I get sympathy and THAT look. It's no longer a "how are you?". Now it's "how are you feeling?"
I know people care. I just wish I could honestly say "I'm good, thanks".
I wish I could be me again. 
Shift bid, please happen soon. Dayshift, be mine soon. I need more sleep. 
Speaking off, I'm losing the battle against my eyelids. 
Goodnight World

Wednesday, July 17, 2013

Swallow the Bitter Pill ...

Of perspective ...
This week's celebrity news has left me feeling a bit off kilter.  Who cares, they are celebrities right?  Yes, this is true.  But, I'm not talking about Kim Kardashouldn'tbefamous, or Honey is a Boo Boo.  I'm talking about a beloved television star, and a beautiful, brave little girl with the biggest most expressive yes you've ever seen.
I'm a Gleek.  I'll admit it.  I love Glee.  I watch it religiously, and I have the CDs.  I even love a lot of their versions of songs better than the original.  It makes me happy.  It reminds me of a better time in my life.  I was in high school, I was talented and known for something, my parents were alive, etc.  We weren't as hated or teased as the kids on Glee but I remember the rehearsing and performing ... ahhh, those were the days.  Anyway,  I love Glee.  Moreso, I love Rachel and Finn (two characters on Glee) and at the end of last season, there was a glimmer of hope that Rachel and Finn would get back together and live happily ever after.  Knowing that the actress who plays Rachel (Lea Michele) was actually dating Finn (Corey Monteith) made me happier.  They are a very attractive couple and have amazing on screen chemistry.  So, when the season ended with hope of a romantic reunion, I was happy.
However, Corey Monteith is now dead.  He died.  He has been battling drug addiction since his pre-teen years, and apparently, relapsed while at home in Vancouver and unfortunately, it was the very last time he would.  He's gone.  Heroin and Alcohol consumed him.  No more Finn.
My heart broke for Lea Michele.  My heart broke for his family.  This wasn't a star you looked at an saw their addiction.  When he went into rehab earlier this year it was a HUGE shocker because he seems normal.  Clean cut, not out partying and being in the tabloids all the time.  It wasn't like watching Amy Winehouse self distruct or Amanda Bynes and her downward spiral.  No.  This was from out of left field.
How can Rachel and Finn reunite and live happily ever after if he's dead? Lea and Corey won't get their happily ever after.  I don't even know how they put this in the show.  How do they ask Lea Michele to rehash the worst moments of her life by killing off the character?  Do they just pretend he rode off into the sunset and did something else? 
Anyway, it's a death that rocked me a little bit.  Just sad and too soon.  It sucks.
And then ... there's the brave battle of Talia Castellano.   You may not know who Talia is.  I do.  Well, I got to find out who she was because I watch the Ellen show.  Talia was only 13 and had been fighting neuroblastoma for 6 years.  Can you imagine being in the fight of your life since you were 7?  I mean, I didn't know I had anything seriously wrong with me until I was 33,  and I've been quite the baby about it and haven't been through NEAR the things that Talia went through. 
Talia had a series of You Tube videos on how to put on makeup.  I've watched a few of them.  No, I haven't tried her techniques.  Anyway,  Ellen brought her onto the show and worked with CoverGirl to make Talia a covergirl.  Talia never wore a wig, never gave the baldness a second glance.  She always talked about embracing what she had and making her face the focal point of what people saw. 
Sure, you may look at her pictures and think she was wearing too much makeup but, when you think of the big picture, she felt good about herself, she was a gorgeous, sweet little girl.  She was just a little girl.  I think back to what I thought/felt/did when I was 13 and cannot even begin to imagine having such a battle on my plate.  Would I have fared as well?  I know I am a big whiner a lot of the time and then, I remember Talia and shake my head. 
Talia died this week.  Thirteen years old.  Twenty years younger than I am right now.  I have had 20 years of living that she will never get to have.  And for no other reason than that sometimes the world just REALLY sucks.  In twenty years since I was 13 I've seen/done so much.  High school, dances, boyfriends and dating, getting my license and a car, sports, performing, traveling, graduating, college, getting a job, my own place, buying a home, my own pets.  Some of those things seem insignificant but ... they are life experiences that we all take for granted. 
I may have a life threatening condition, but it's being addressed, and will be manageable.  I may get my cancer back, but that will also be addressed and managed.  Does it matter?  I've lived Talia's lifetime over and over again. 
I am alive, I have a home, I have a job, I have a husband and fur-babies, I can drive, I can take care of myself.  I am living life even if I am not living life to the same level as other people. 
My thoughts and prayers are with the Monteith and Castellano families.  There's no imagining the pain they are feeling right now.  There's no answers to why their loved ones had to go.  I hope they find peace in this dark time. 
Hold your loved ones, tell them you love them.  There's no way to tell when our time will end, or people you love will be gone from this planet.  We must live in the now. 
And ... I need to stop being a big baby.  :)

Monday, July 15, 2013

&%@!&*

*Insert your favorite expletives for the title*
Seriously, I want to scream and shake my fist at the world.  No, this entry has nothing to do w/ the nonsense being protested around the world.  The media has bred a society of idiots who don't look at the big picture, just what the media is spoon feeding us.  I won't comment on it beyond that.  This about real issues.  My effin' issues.  Life or death situations. Things that are REAL versus what is made up in someone's mind. 
When is this going to end?  At least temporarily? Or, would it just get worse so that the doctors pay enough attention to actually fix the problems?  I'm at my wit's friggin' end. 
Yesterday, I believed we were going to be working on the house but Dan surprised me by dragging me out of bed, tossing me in the car and heading for Napa.  I knew he wanted to have breakfast at the Fremont Diner.  We've been talking about it since we both tumbled off the Paleo wagon and we were both awake, so why not?  Of course, it was crowded.  Dan said "we don't have time to wait" when I said it wasn't THAT bad and we could just hang out a bit and watch the chickens out back.  It was then that I knew where we were headed. Whuile he was inside grabbing a quicker breakfast for us I checked Fandango's website and confirmed there was a showing of Despicable Me 2 coming up soon. 
He tried to play it off with some horrible lies that I called him out on.  "Meeting the family at Grace Church for services" of which I told him that Nancy, Steve, Gma and Gpa go to a church in Benicia right now and that Nathan and Megan might not quite be back fro mtheir Florida trip.  Then, he tried another "Well, I have to finish something really quick at the Napa house". Um, no.  The house has already had an open house, last I knew he was done with the house. 
So, we headed to the movie theater.  ha!  I was upset though because I really and truly was feeling weird.  I've never felt that way before. It was a cross between feeling like I was going to throw up, pass out, and being dizzy.  It sucked.
During the movie, I kept feeling SUPER tired, like I couldn't keep my eyes open.  It wasn't the movie's fault.  It was my stupid, malfunctioning body.  But, I managed to stay awake and I was glad because I LOVED IT!
After the movie, we took a car ride over to Benicia to see the family because we hadn't in awhile.  Both of us missed the big party in June.  However, they weren't there when we got there.  They were with other family in Sacramento.  Oops.  So ... another scenic car ride home.  We wanted Chinese (they opened at 4, it was 2:30) so we decided to have burgers (happy hour until 5, drats) so we headed home.  We talked about steak.  But, Cattleman's didn't start serving til 5 either.  We ended up trying Jackson's Bar and Oven.
Unfortunately, due to my massively still ill state, I just ordered a burger.  But what we did have was yummy.
We went home, hung out with the animals and watched TV.  I was in bed at 9:30 because I felt even worse.  Seriously, I get one day off and that was how my body had to react? 
I woke up this morning because of the construction across the street.  I figured since I was up so early I would get the laundry done and get groceries at the same time.  So I did.  I got the laundry finished, groceries bought, groceries put away, laundry put away, dishwasher loaded, dinner made, dishwasher unloaded, etc.  It noticed it upon unloading the dishwasher that I wasn't feeling quite right.
I had been doing everything in my power to NOT think about how I was feeling, charging ahead and trying to get caught up because I knew I'd have a dentist appointment tomorrow and I wanted their to be leftovers available for Dan to have for dinner at that point.  I doubt I'll be eating tomorrow!!!!
I began to shake uncontrollably and feel weak.  The same feeling of vomitous, dizzy and passy outty returned.  I powered through putting the dishes away, knew I had to hit the bank, put Loki in his ex-pen and headed out the door.
Of course, halfway to the bank, I began to seriously question my decision to get behind the wheel.  I did alright, there wasn't anything that would have put anyone in danger but ... what if I had passed out, you know?  Anyway, I questioned my decision to come to work.  I got angry and pissed off.
I spent an hour on the phone today trying to get ahold of the Patient Advocate people at Kaiser.  I tried the number I was given, I called the regular number, I called the 24 hr number I was given and got an operator and asked specifically for the advocate.  I was transferred to the business office who didn't answer. I called the number I was given by the operator dude.  No answer after many many rings.  WTF?  It's almost as if they KNOW and are trying to block me from that as well.
So, I'm mad, angry, pissed off, sick, weak, dizzy, nauseous, blah and depressed as you cannot believe.
My brain goes into a very dark place sometimes because of all this.  I feel like the entire friggin' world is against me at the moment.  I feel like I should just let this disease consume me and maybe my family can take Kaiser to the cleaners for mis-treating me.  After all, that would be two family members that we would have lost to Kaiser's inadequate care. 
I become overwhelmingly upset because I look like a cow.  My face is splotchy, fat, and swollen.  My body is ... let's not even get into describing that, OK?  I hate it.  I hate everything.  I hate it all!!!! Why?  Why can't someone help me?!  I pay a shitload of money to Kaiser.  It comes from my job, and my husband's job.  You wouldn't believe the amount of money we are paying to Kaiser.  Yes, I don't have to pay co-pays for anything right now, it's fabulous.  But, it also feels like I'm not getting the same treatment as someone WITHOUT the coverage that I do.  They don't get to send me a massive bill so why try, right?  I know it's a stupid thought but I really feel like those without benefits actually get better treatement when they go in.  It's probably not true, you don't have to lecture me on that. 
I wish I stayed home.  But, I can't afford it.  I can't.  I need to be paid time and a half for my overtime this weekend.  I don't have a choice but to work my ass off.  Our house needs a shit ton of repairs, and I have a massive house payment and again, I won't let the bank say "I told you so" if I miss that payment.
I honestly wish the world would get off my back for a day or two.  I wish a fairy godmother would swoop down, wave her wand and make this illness disappear so I can go back to being healthy and working out and feeling like I am a valued member of society.
Until then, I feel like jabba the hut in the corner, never allowed to play with anyone else, judged relentlessly, the receiving end of comments that could cost someone their job if I wanted to pursue it ... and just a friggin' loser. 
I'm sorry for whomever read this, the title should have tipped you off that it wasn't going to be pretty. 
*
things to be thankful for:
- my husband loves me and treated me to a movie that I couldn't wait to see and took a day to spend with me. 
- I do have a home and a roof over my head.
- I do have a good job
- I have those good benefits, not that they are helping much right now
- I get to see my dentist tomorrow
- I am still alive.
- my furbabies love me unconditionally
- I have a wonderful family. 

There, I counteracted my negativity by acknowledging the positive right? 

Saturday, July 13, 2013

Crack

Life and I seem to be having a disagreement. I say thing should be better, life says "aw hell no". 
While having multiple dizzy spells today, feeling a bit like I'm going to tumble off a cliff and weak.... I was munching away on those air crisp snap pea things. They practically dissolve in your mouth, there's absolutely nothing to them. Well, at one point something very hard and crunchy was there. I was confused. I spit what I could out and then felt the very jagged edge of my tooth. This prompted a further inspection in the bathroom mirror.
Yep.
My lower left back molar is missing its ass. The back end broke off. Not sure how. I haven't eaten corn nuts since high school, I don't crunch ice, etc. 
It didnt hurt, at first, but is slowly starting to bug me a little. This could be manifested by my head. 
I see a dentist appointment in my future. This was supposed to be a week of doctor appointments but I cancelled them all in a fit of rage. Probably not my best decision but I won't be seeing any of my team of doctors until I've spoken with Kaiser's patient advocacy program. Anyway, I'm not pleased. I would love to cap this long week and stupid broken toothless with a glass of La Fantasia from Castello di Amorosa but noooooo apparently prednisone and wine aren't a good mix.
*grumble*
Yes, things could be worse. But, if things were worse my doctors would be more proactive.
Do any of you know what it's like to have a disease your doctor isn't well educated on? I do. It sucks.  I've done so much research on it lately I feel like I know more than they do. And, I probably do.
When I have to see a team of specialists because it involves multiple organs and no doc is an expert on the entire body, it's not a good sign. 
However, soon ill be consulting with a vasculitis specialist in San Francisco who WILL know this disease and WILL make everything better.
Except my tooth. That's a whole different ball game. 

Thursday, July 11, 2013

I want ...

1. A vacation
2. A spa day
3. To have my hair colored/cut
4. To go to the SF Zoo
5. A day at Pier 39, San Francisco
6. A day at the beach
7. To go to Disneyland
8. To go a whole day without joint pain
9. To be able to swallow without pain
10. A beauty day, hair, makeup, etc.
11. To see Despicable Me 2
12. To do laundry at my house
13. Energy!
14. To not have a potentially fatal disease
15. To not have a disease
16. To not be judged for looking the way I do
17. To be pretty
18. To be accepted
19. To not constantly be judged on what I eat
20. To not constantly be told how I should be doing things!
21. to feel Normal. 
22. to be a mom
23. to live life ... not just survive life.

I want so much I can't have.  I just need something other than working day in and day out, taking stock of aches/pains and what not, being angry at Kaiser, wishing to be like everyone else.

Oh well ...

Wednesday, July 10, 2013

Numb

My uncle died. 
Maybe you didnt know I had an uncle. Sometimes it is hard for people to keep up with my family tree as it was a tree that sort of absorbed and grew into another tree and there's weird branches and ... It can be confusing.
My mom had a brother. Older. His name was Michael, just like my older brother. Not sure if that's where my mom got the idea for my brothers name or not. Anyway, my point is, I had an Uncle Mike. The reason he hasn't been mentioned her before is the estranged nature of our relationship.
Why were we estranged, you ask? Let me tell you.  He disappeared on us. No, not on his wife and kids. He disappeared on us ... His sisters kids. I can tell you the last time I saw him before recently.
My mothers funeral. 
Yep. I was 17, burying my mommy, an then poof ... My uncle, aunt, and two cousins sort of vanished from my life. 
Fast forward to three years after that, my daddy dies. My brother calls up his house, my aunt answers, basically brushes the news off and that's that.
Ooook.
Then, threeish years ago my Uncle happens to be serving on a jury with my co-worker, somehow my uncle knows I work for the sheriffs office. (Still to this day I have NO idea how because last he saw me I was in high school gainfully unemployed!) 
My co worker gives him my number (with my permission) and we talk. I meet my cousin for coffee (which felt weird and sad to me because we had been so close as kids) and then my uncle and his wife come to my quickie courthouse wedding.
It was nice/hard to see him. Seeing him, hearing his voice ... It all brought back memories from when my mom was alive. It also brought up the hurt that he had been absent from my life, ducking out at a time when we needed him most.
That was the only time I saw him. We would text on holidays, at first he would invite me to their family functions but .. I have my family, Dans family or I was working. Besides, it wasn't like I was just gonna hop right into a relationship with him as if he hadnt hurt me.
This isn't meant to be an Uncle bashing blog. No. It's just ... I regret not making more of an effort to see him again.  He was, after all, my mothers brother and my last real connection to her past.
My grandparents are gone and now her brother is too.
I used to say the generation above me in my bloodline doesn't exist anymore. That was before I had any contact with him. Now, those words ring true. 
My mothers family is gone, except for us kids. 
I had an Uncle. I remember him seeming REALLY tall when I was a lil kid. (He was 6'4) I remember he had a stoner's laugh. Thomas' English Muffins use to make me think of him because he used to drive for them.  He played football in high school. 
I am sorry, Uncle Mike. I am sorry we weren't closer. I am sorry I didn't get to say goodbye.  If you're up in heaven, please say hi to grandma and Gee. And ... Most of all, when you see my mom and dad, could you tell them I love them? 
I hope you are all together now. 
Rest in Peace, Michael Ward. My Uncle Mike. 

Monday, July 8, 2013

Moving in Reverse

When you were a child, did you ever ride in the back of a pickup or a station wagon facing behind you?  I did.  That's how I feel my life is right now, I am moving away from "good feeling" back into "24/7 cruddy feeling".  I want to hop out and run back over to it at top speed.
Me?  Running?  Hold on while I pick myself up off the floor from laughing so hard.  That's hilarious.  Anyway, I digress.
I can't seem to sleep enough.  My energy is non-existant. I feel like I am slogging through mud.  My head is trying to see through a thick fog that is swirling around my head like soup.  When I wake up, lying totally still in bed, nothing hurts but then, I get up and my brain does an inventory of what hurts.  Then, I check the time and either get happy or sad that I have time to crawl back into bed.  I've never been like this, I could sleep all day if the time allowed.  Ugh. 
Then, there's my shift.  I don't mean to beat a dead horse but, I am having a horrific time even staying up til 1am for my shift.  I start to fade by 7pm, things start to get worse, I feel horrible.  I want to be in bed ASAP.  When I'm off, I am done, if the dishes aren't done at 9PM, they don't get done because I'm toast.  It's like when I was going through radiation, I would be somewhat awake in the morning but then there would be a steady progression in the downward spiral to the evening. 
Unfortunately, I work at night.  I work at night for the time being.  There are 3 open dayshifts ... three open dayshifts that might be offered in a shift bid as soon as our trainees are done training.  I am the next person to get dayshift, no one above me wants it.  I am THAT close.  It's like a tiny light at the end of the tunnel.  However ... there are no open night shifts right now, and ... I have this sinking feeling in my stomach that something is going to happen before shift bid.  Someone will retire or quit from night shift, making there be an open night shift .... stopping me from moving to dayshift.  I just have this feeling.
Yes, I could tell the doctor my conundrum and have a note moving me to dayshift.  I don't want to be that person.  I want to get it the right way.  I want to get my hands on dayshift the way everyone else did, through a shift bid.  I don't want to be that person who sidesteps the regular process and gets it because I'm "special".  I know that sounds lame but, it's unfortunately what would be said.  So, I continue to plow ahead, working my shift, quietly crying on the inside because I am exhausted and wanting to be at home in bed. 
Everyone has an opinion, naturally.  Everyone in here has an opinion and of course, I have an invisible illness.  I don't look as sick as I feel. Sometimes, I wish it would show like with unexplained dramatic weight loss, or something else.  Instead, I look healthy as a horse and as big as one too.  I don't want to constantly talk about it, but I am the first to say I feel like shit, because I do. 
Still, I'm exhausted all the time, I am shaking right now and I don't know why.  I feel like I've eaten, but I am so weak and shaking.  I need to stick it out at work for 5 more hours.  I need to get through this. 
I want to turn back around and head forward!

Friday, July 5, 2013

Critchety Crochety

I swear my joint inflammation moves through me quicker than ... Well, it moves fast. My brain isn't exactly functioning at the moment so I can't put the perfect metaphor in there. Even then I had to take a moment to remember what a metaphor was. Ooh boy, perhaps I shouldn't be writing?
Transient, mobile, roaming arthritis. Here one day, somewhere else the next. Just yesterday I needed a cane to get anywhere in any sort of quick fashion. Today? Not even a twinge of pain in my knee. Today I can't move my shoulder all that well. I wonder where Boris will strike tomorrow? 
I also have never been much of a pill taker. I'm more apt to power through a headache than go for the pill bottle. O course, there are those headaches where I also need to pop an Advil or two.  These days, I rely on tiny white pills to get me through the day or night. In fact, I will even be asking the ol' doc to order a new  RX for a nighttime pill. I'm running low on the pain pills that bring with them a good nights sleep. Believe me, when my joint of the day isn't happy, no one is sleeping. 
Seriously. My whimpering and jerky movements wake Dan, the puppy, the cat goes flying, etc.
Speaking of sleep .... I am really hoping to nod off soon. It's been over a week since I slept more than 4 hrs. I definitely can tell a difference in my mental acuity. 
Today ended on a beautiful note. I will write more about it tomorrow as I feel the loopiness of my medicine really starting to take over.
Time to let my Crochety grumpy ass go to sleep.

Can I get my foot in my mouth?

Maybe if I wasn't so dang swollen I could ... haha.  Anyway, I feel like I need to stop this caterwauling and whining.  I know it's good for me.  It gets it off my chest, it allows me to be pleasant to those around me and allows me to smile and "try" to enjoy life.  But, after a particular whine fest (today's) I came across another Wegener's Granulomatosis Support Group so I joined.  There's nothing greater than seeing that there are other people out there who know exactly the pain I am feeling.  However, it's also a major eye opener that I truly have been such a cry baby!

Consider me one of the luckiest of Weg's patients in that my disease was discovered after approximately 6ish months of testing. I read tale upon tale of years of agony and misdiagnosis.  Severe kidney failure, dialysis, hearing loss, vision loss, ... Saddle nose deformity.  Good god, I have no idea how I will mentally be able to accept my nose collapsing.  I already think I have a hideous nose ... I don't know what I would do.  Anyway, there have been some people who have gone through absolute hell before being told what they had.   I am lucky that my general doctor looked at my records from last year (when she was on maternity leave and hadn't even been involved) and saw that I had a "sinus infection" from february til sometime in June and then the ear issues.  She is the one who ordered the autoimmune panel.  She is the one who went "hmmmmm".  I love my PCP.  I do.  She is my hero in all of this.  she started the ball rolling in that direction.

But, seriously, in the grand scheme of Weg's I have it good and yet I throw such temper tantrums and get so angry and upset at the world.  C'mon Nicole Alison. I'm not like that.  I get mad when I hear people like that and yet,  there I was.  Whine Whine Whine.

It hurts.  I'm not gonna lie.  My knee swelling actually has gone down and now my shoulders are in agony.  I saw it mentioned on several of the posts so I don't feel as alone.  Mobile Arthritis, Transient Arthritis, Roaming Joint Pain.  It was referred to in many ways.  One moment, as is my case, your knee won't work and be swollen and painful.  Then ... that pain fades away and sneaks around the super highway of blood vessels and finds somewhere else to attack.

At first, I thought my right shoulder was smarting because I picked up a cane today to assist getting me around a lot quicker.  Alas, it's in both shoulders now so that can't be it.  My throat's scratchy, my nose really hurts and (sorry Brianne) keeps throwing out blood clots.  The eyes, they are a-burnin' my chest is tight, ... same ol' same ol.

Funny lil story, I emailed my doctor an update as to what has been going down these last couple days with the lowered meds and ... then I was wondering why on earth he hadn't written me back.  He didn't have an "out of office" note and he's usually so good at either emailing me first thing, at lunch, or at the end of the day.  It dawned on me about the 60th firework call we took today that it was a frickin' holiday.  Duh.  Smart. 

I think the wegener's is attacking my brain! Not really.  It just feels like it sometime.  Today, a major contributer to my malaise is the lack of sleep for the last week. 

However, Dan is handling the water guys tomorrow at the house so I can take a pain pill when I get home and hopefully get a blissful nights sleep.  Of course, if he forgot to thaw the chicken I may have to make a quick detour to the store fairly early to get a new thing of chicken to make for dinner.   I think that's a small price to pay for how late he worked in the yard to get ready for the water gguys tomorrow, and the fact that he will be there with them to alleviate the stress on me.

The prospect of a restful sleep is so enticing I am almost drooling about it.  Does that make me old?  I mean, I've got the cane so there's not exactly a young vibe going on right now.

I hope everyone had a safe and wonderful Fourth of July.  I was working but time seemed to go pretty fast.  I am very grateful for having a day off though.

Thursday, July 4, 2013

Whimper...

Ever get a charley horse? Ever get one in the front and back of the same leg simultaneously? You can't bend your ankle in any direction! Both are agonizing. Well, I had one of those wonderful things at 8am. It wouldn't have been so bad if I hadn't been up til 4:30am with leg pain and a doggy who boofed and whimpered in his crate.  Then, once the pain in the shin and calf had finally figured itself out, the knee pain stood back up and said "my turn again?"
I know that joint pain is a side effect of tapering off prednisone. However, this is more than a little joint ache. I can't walk. It doesn't bend without major pain. It's hot. It's swollen. That's inflammation by any definition.  Not to mention the reintroduction of bloody noses, more sinus pain, eye pressure, muffled ears and ... Welcome back Mr. Cough.  So nice (not) to hear from you again.  
I hate prednisone for the extra weigh, my round face, the pregnant looking belly. I hate it for what it does to me, but... Apparently, that crap had been working.  I was feeling better than I am right now that I am slowly coming off of it. I mean, nothing is worse than it was (except my knee) so I am hoping that maybe things will level out. But, I'm being a crybaby right now. 
It hurts. I feel like crap. I don't want to do anything right now but get some sleep. I want to cry I am in pain. I want to lock the doors and go to bed. But I can't. There's bills stacking up from this house. I need to work more than my 40 hours. I feel backed into a corner. I don't feel like I have options anymore. I feel like I have to button my lip and charge ahead. It feels like everything is on my shoulders. If I get worse I could miss work which means we lose money and could lose the house depending on how long I'm out. Wow. What a loser I would be! So, I push through, ignoring the pain, ignoring the exhaustion, I can't let Dan down.  I can't let myself down. I don't have time to have this disease. I can't afford this disease. There's no place for it in my life.
Yes, Dan is working. But, we both need to be working for this stupid house payment. It leaves me with absolutely no choice. Just keep swimming. I love my house and .... I don't want to prove the asshole at the bank right when they made the comment "she filed bankruptcy before, what if she gets sick again and doesn't make her payments?" I don't want to prove everyone right that I'm a pathetic loser.  It would feel like the bank would say "told you so".
I am the one who is sick, I am the one who had to file what I did before and carry that with me and get judged by it all the time. I'm the one who would be blamed. 
And you know what sucks?! I did NOTHING to cause my disease. It's not like I smoked 6 packs a day and got lung cancer, or drank til my liver gave up the ghost. Nope. I did none of that.
I don't, nor have I ever smoked. I barely have drank. I treat people with respect. I don't break the law or play the system.  I do my 40 hours and then some.  I bend over backwards to help others. I pay my taxes, I pay my bills (the bankruptcies weren't because I didn't pay my bills). So, why am I being punished? What did I do wrong to get slammed down like this? 
I'm angry, frustrated, stressed out, anxious and sick. I want to be like everyone else. I want to go to the gym, or for a walk. I want to be able to plan for my future. I can't even begin to wish for a trip or vacation anywhere.  I had to use up all my vacation time for my medical leave. So even if money wasn't an issue ... Time is. 
My mind and heart have been in a blender since last February when this all began. And since last December its only gotten worse. I NEED a break.  I need a break from everything.  I'd give anything to do something fun, without worrying about bills, about my job, about my health. I just need a break. 

Wednesday, July 3, 2013

Pep Talk

I feel like I need to give myself a pep talk. It's been beaten into my head that you're nothing if you aren't thin, or working out. You're apparently a loser. Well I'm not. I have a dragon inside me who would love more than anything to destroy me. I think I have him pacified at the moment but, he's not going away.
When I walk, my joints swell up. I know you all get sore right? Well, try not being able to walk, and feeling like someone has taken an electric drill to the joint and is just grinding away, even when you aren't moving. Try learning that you can't just sit anywhere because certain sitting angles won't work. When my shoulder decides to swell I have a hard time getting my arm up over my head.  The drugs, or Boris we aren't sure, have cause my ankles to swell so that both my favorite Converse and my gym shoes won't fit.  Oh trust me I love being over weight and now have fat ankles.
I have to take inventory of every ache and pain. I can't just toss back Tylenol (not while on steroids) and call it good, I need to analyze what's going on. I have to check the inside of my nose to make sure it's not scabbing again, I have to inspect spots or bumps on my skin to make sure it's not a purpura rash or a potential lesion. When my eyes hurt, I immediately have to look and see where it's red. I can't wear my contacts because the whites of my eyes are inflamed currently. So if you're keeping score I now am swollen from drugs with fat ankles and glasses. My beauty knows no bounds ....
I hate that I'm in the position I am in. I hate that I constantly feel I am not good enough because I am not doing what everyone else is doing. I am in a special category. It friggin sucks. 
Then, there is the much much bigger issue. What if Boris attacks me when he wakes up again with more fervor than this time? I got off easy really. The time I missed was mostly from radiation. I've been working with all that's been going on with Boris. But if he takes a swipe at my kidneys ... Well I won't be here. If he chomps on my lungs or squeezes my trachea ... More missed work. I find myself quite stressed at the potential. I don't want to lose my house, I don't want to lose my job. I don't want to be hospitalized, I don't want to take immunosuppressants, I don't want to die.
On the forum for Wegeners that I found, one of the people who's stuff I read has died. She died from complications from this disease. Then again, only a few years ago this disease was considered terminal. Now it's incurable but people can live. But not forever apparently.
Do you have any idea what it's like to feel like there's an Anvil being held over your head by a rope? I have no control over Wil E Coyote if he wants to drop it on my head.  I have no control. 
And for those of you who want to tell me that exercise helps? Go back up to the top and read that it triggers my joint issues and then it takes me more than usual to be able to just walk again. Yes once we get these meds out of my system I can start doing things more. But don't claim to know what's right for my condition that isn't common. Don't throw your know-it-all crap in my face. I'm trying to manage the fact that I have a disease that could kill me. I look in the future and there's no longer and endless road stretched out in front of me.  I am scared of what's up there. It's dark and twisty. 
I'm scared, OK? I just want to find my happy place. I just want to have a day where nothing hurts, I can breathe 100%, hear perfectly, and see fine. Is that too much to ask? I want to go somewhere and NOT think about what I have. I just want a normal, regular day.

Tuesday, July 2, 2013

Oops I better not do that again

I was a busy bee today. I went to the store and got crap to make dinner (I assure you it didn't taste like crap) and came back to start making it. I decided to make a parmasean meatloaf and asparagus. Yes, I'm aware it was 1000 degrees today. Believe me I regretted this decision throughout the cooking process. Anyway, 
I cooked dinner, made a salad, packed my lunch, and sat down for a bit to watch some TV before work.
Something slipped and I just felt off. And that feeling has continued to worsen throughout the night. I know I screwed up and left my medicine at home. I had planned on taking it when I got to work since I'm supposed to take it with food and I didnt have anything handy. However I got to work and ate and realized I didn't have it.
I am home now and took it, per the instructions I have. So, long story short, I'm hoping this weirdness is related to missing my meds for a few hours. However, it truly was only a few hours and ... This seems a bit extreme for that. I could see if I missed 2 days.
Something just isn't right. I feel confused. I feel sort of like I'm not totally present. My chest hurts differently than last week. I just feel like something is very wrong. But, I'm not sure what to do. I am hoping to fall asleep and let sleeping fix me. Then again, part of me is scared something will go wrong and I won't wake up.
I am tired of having this on my mind all the time.  I'm tired of thinking about it. I'm tired of everything todo with it.
And I'm just tired so I'm going to sleep.
Night.