Sunday, June 30, 2013

Stop the coaster, I want to get off.

I had a doctors appointment on Thursday. It was supposed to be two of them but for some reason I got bumped out of one. Anyway, I left the doctors office feeling elated. My disease was "sleeping".  I consider my disease, whom in my head I've named "Boris", a dragon and finally the dragon had gone to sleep. I was given my taper instructions to get off this godforsaken medicine and lose at the very least the ten seriously unwanted pounds gifted to me by prednisone.
My doctor and I hatched a plan, kidney function tests every 2 months, and to call him IMMEDIATELY if anything I've got going on comes back. We have high hopes of controlling this dragon before he grows into a fire breathing dragon. The goal is to stay two steps ahead of it, keeping me off the major toxic immunosuppressants. 
Well ... You know what they said about the best laid plans. 
I lowered my dose Thuraday afternoon. Friday morning? Boris was rumbling in my left hip. Friday afternoon? Boris was sucking the life from me (heat wasn't helping). Saturday? Boris bit me in the shoulder.
Today? Boris is gnawing on both hips, ankles, my right shoulder and moving up my collarbone and neck. He's poked me in the eye and lit the furnace in my head on low. (Fever)
I haven't called the doctor. Joint aching is a withdrawal symptom of prednisone. I'm hoping my eye and the fever are unrelated. 
But, the truth is, ill be on the phone with them tomorrow. Boris apparently only took a cat nap. He's recharged and hurting me more than he ever has.  
I don't exactly know what to feel.  I go through so many emotions in a day.  Sometimes, I hate what I hear myself saying in my head. Sometimes, I feel like I'm going to fight with everything I have. Sometimes I want to go lock myself in a room far away from everyone so they don't hear me whine, they don't have to hear about this. I am embarrassed at how I look, I'm embarrassed at how I walk, I'm embarrassed for my husband who has to walk beside me. 
I want to be faceless in the crowd again. Nothing special. Nothing different. Just an ordinary person with an ordinary life. 
I want to go back to saying "yes, despite how I'm fat I'm in excellent health". 
I'm scared. I hate how I have to evaluate every ache and pain. I have to look at my pee, inspect my eyes. I'm scared that one day Boris could decide my time here is done. 
I'm 33. I'm not a kid but I'm sure not ready to go anywhere. I still had dreams and things I wanted to do. Children? Yea ... I would LOVE to have a baby. Just one. But will I ever be well enough to try? And if my kidneys are at risk with Boris, will being pregnant risk my life? So it's a painful gut wrenching feeling to see babies and things. Such is life though. 
I spent 95% of my day pretending there's nothing wrong. I don't want to burden anyone with me. I'm not my disease.  One thing I have always been complimented on is my smile, so it's hard to not let that go anywhere. Just keep smiling. Don't let them know you hurt SO BAD.  Don't let them know you can't hear well so music doesn't sound the same which makes you sad.  Crack jokes, make people laugh. Don't bring them down. 
Boris is here to stay. He's incurable. He's an asshole. I have to accept that he isn't going anywhere. This is my life now. It's an adjustment, let me tell ya and its not even as bad as it can be. I'm hoping that never happens but, it's a reality that must be taken into consideration.  
However, a wise woman whose smile I miss at work told me I need to talk about things. So, B-Rook, I'm talking. Ill blog once a day to clear my head.
I blog for me anyway. It's not like people are forced to read my whining. But maybe, I can get my fears out of my head, ill shrug off the anger and frustration and be able to continue being a happy go lucky person. 
For now, I need to go to bed. I feel absolutely abysmal, and I start with a trainee tomorrow. It's only fair that I bring the best me I can. 
(Side note: this all started for me back when I started training Alex.... Thru Mike .... And now Eric. My apologies to them... Only Andy got me with my A-game.)
February 2012. The last time I felt like a regular person. I was down 30lbs. I was working out, signed up for my first 5k, eyes on the bright future I was gonna have. Now? 
Yea.
Whatever.
F-you Boris. 

Sunday, June 23, 2013

Debbie Downer

It's been too long since I blogged.  Quite honestly, I don't have anything interesting to say.  Do I want to open up my mind and heart and spill it?  Sure, but you won't want to read it.  Inside my head I'm Debbie Downer right now.  I'm in the thick of dealing with some serious gloomies over everything.

Ain't nobody got time for that.

Especially me.  But, that's what I carry around with me.  I'm pushing forward, trying to pay my bills, make my house payment, be a functioning member of the workforce.  I've found a new love for cooking and am constantly looking for new recipes to try.  Hubby seems to like what I've made thus far which helps ... however, often times, I find myself needing to take a break and sit down while cooking and then I am reminded that I am not the same person.

I look hideous.  Even with the pretty clothes I purchased to make me feel pretty.  If you put a dress on a pig, it's still a pig.  Right?  It's how I am feeling.  Drugs make me gain weight.  It's the truth. It makes me freaking STARVING.  And it's not a good feeling when I've eaten the correct serving size and suddenly I am ravenous for food to the point of shaking.  It sucks. 

Then, everyone ... and I feel it is quite literally everyone around me is all into fitness and running.  They are all doing it.  Everyone is still on the path that I was on before life shoved me down.  I am so  happy for them and happy to hear their accomplishments, but then ... I start to hate myself.  I hate the very thought of what I look like and avoid the mirror at all costs. 

No one understands what's going on.  They don't see me suffering because I smile and laugh.  But inside, I'm miserable.  Everything hurts, I feel out of it.  I feel fat, disgusting and gross and unable to change it. 

I'm a huge loser.  I feel like my husband deserves a wife that's not sick.  He deserves a wife who is pretty and fit and can keep up with him.  He gets plenty of attention ... I get to hear all about it. I trust him ... it's just that I don't blame him for soaking up the attention from those pretty girls.

Lord knows he doesn't have anything special at home.

See?  I'm in a dark place mentally.  Everything I've ever known has changed.  I have NO idea what the future holds for me.  I have no idea if I can go back to trying to live normal life again.

See?  Total Debbie Downer. 

I try and try and try not to talk about being sick.  No one wants to hear it.  It's annoying.  I don't want to hear myself talk about it.  I get mad if I mention it.  No one wants to hear this shit.  Shut up Nik.  You're alone in this.  Everyone else is trying to live normal happy lives.  Shut your pie hole and act like nothing is wrong.  It's better that way. 

Time to slap a smile on my face again. 
Just keep swimming ... Just keep swimming ...

Tuesday, June 11, 2013

Let it Ride

I'm come here after just reading a rather curt, rude email from my doctor.  In hindsight, now that I've taken a moment or two to not just react and write this.  He has a point.  He admits I have this disease, but he is trying to instill in me that we have caught this before it could do any real serious damage.  I don't have any life-threatening symptoms.  My kidneys are functioning excellently, my nose is still fine (crooked but fine), and I don't have sinus damage.  I'm WAY ahead of the game in that I can take the drugs to get the inflammation down and try to keep everything under control that way.

I won't find myself hospitalized with failing kidneys if I take care of myself, if I contact him the second I feel things coming back and start my prednisone.  I'm worlds better than all of the people I have met through the forum.  I don't have any damage that will stay with me for the rest of my life. 

He doesn't want me to take the big drugs because he doesn't think it will help.  He sees that it will cause more harm than good.  And, in a way, I understand that.  I do understand that.  If it's only going to make me feel worse, and cause further issue than I currently have ... I shouldn't take it.  I'm willing to do what I can now to do that.

I don't want to take those drugs.  I don't want to risk myself any more if I don't have to.   I was instructed to up the Prednisone to the high dose and see if that makes me feel better.  It didn't before but I am trying to be optimistic here. Yes before I walked around like I had the flu 24/7.  Now, I have the flu 24/7 and arthritis.  It's gotten worse but ... it could have been MUCH MUCH worse, right?

Perhaps, I should relax, do what he says, eat healthy, drink my water and see what happens.  I'll take my meds like I'm supposed to.  The reins are in my hands now.  I have this disease.  It won't ever go away.  It's not bad yet.  I'm still good.  I have all my organs intact.  I don't have a saddle nose.  (I have an ugly nose but it doesn't droop in the middle!), I don't need dialysis, I don't need to miss anymore work (unless it just gets worse and worse).    Maybe my stress about all of this, the move, the bills, everything is just getting to me.  I haven't slept well for almost a month, I have the most beautiful dark circles under my eyes you've ever seen without the fun drug trips that go with looking like a fat crackhead. 

I am in control.  I know what I need to do.  For now ... no stress, follow the docs orders, drink water only, eat clean, and ...SLEEP!  Whatever happens, happens.  He insists I'm OK the way I am now and I am going to take his word for it and not stress.

Tomorrow, I'll up the meds.  Tomorrow, I'm not going to talk about how I'm feeling every two minutes.   Tomorrow, I'll put the smile back on my face and pretend nothing is wrong with me.  Tomorrow, when people ask how I am, I'll say "I'm good, thanks".

But that's tomorrow.  Today I can't open my eyes all the way, my head feels like an elephant stepped in the middle of it, my knees are killing me, my wrists are killing me.  I was coughing up bloody crap all morning but I'm OK right now, coughing wise.  I just have to keep in mind ...

This will all be better tomorrow. 

Sunday, June 9, 2013

It has a name

I'm an old lady.  I'm hunched over, stiff, limping, groaning when I move, frustrated easily and everything hurts.  I feel like I am 110 years old.  I also have a perpetual cold/flu.  My nose is runny, or stopped up, I sneeze and cough like a sealion in San Francisco.  I am achy and run down and dizzy and out of it as if I have a flu without the fun of throwing up.  There's pressure in my head, pressure in my sinuses that cause my face to throb, the tip of my nose gets these electric bolts that shoot up it.  There's pressure behind my eyes, I have a spot in the lower part of my peripheral vision from swelling pressing against my eye.   I can't touch my eyes, they are tender, the area below them where it would be a dark circle (and is) is sooooo tender.   There's also the fun feelingof the top of my skull being smashed with a sledgehammer.  And, when that stops, someone is sitting on my head stabbing my left or right emple repeatedly with an ice pick.

That's a tiny glimpse into how I'm feeling right now.  This is how I exist ... every day.  I know people who would call in sick for just a minor headache. I don't have that luxury so I plod along, trying to obtain some sort of normal existance even though I just wish I could curl up on the couch under a soft fuzzy blanket in a drug-induced haze so I don't hurt.   Especially since the doctors hadn't care to stop me from feeling like this ... if no one cared, why should I?  Except, when you feel as I do it is REALLY hard to ignore.  

Now that my hips have joined the inflammed joint party, I can't walk normal.  I can't get anywhere in any sort of hurry.  Getting in and out of the 4Runner has been fun.  Going up steps to get into the house takes awhile.  I continue to use the elevator at work.  And you know what?  All people see is the fat girl using the elevator because she's lazy.   I can't go workout and I feel all anyone sees is the girl who's too fat and lazy to go workout.  I know this isn't how my friends feel.  I'm not saying that.  It's just this entire world around me is SO focused on fitness and health ... and I have a disease that wants to kill me.  Well, my own body wants to kill me.  It's my mis-firing immune system that is trying to break me down. 

On top of all this, I"m getting really depressed.  No one wants the sick girl around.  I'm trying SO hard NOT to talk about it but ... then I get the intense feelings of being alone in all this.  No one knows what this is like, they shouldn't want to know.  

My doctor finally decided to re-run all my autoimmune tests and tested my kidney function. The test for the antibodies that points directly at Wegener's Granulomatosis or GPA was off the charts!!  My inflammation tests were sky high.  He admits that I have this condition, and he wants to treat it.  However, because the aforementioned kidney function tests were good ... he doesn't want to give me the full treatment because the risks (to him) outweigh the benefits. 

I disagree.  He wants me to take prednisone but a light dose.  Prenisone has a very weak immunosuppresant factor. It may help with the inflammation thats tearing up my body but it won't stop my body from going right back to attacking the thing it just fixed.   

I don't WANT to take Cytoxan (oral chemo). It's not that I want to take it for fun.  I want to take it to save my life.  Sure, I'm not in a life threatening position yet with what I have.  But ... I don't want to get to that point and I'd rather throw some chemicals into my body to stop what's going on and maybe ... just maybe ... feel somewhat of a normal human being again.

I don't want to feel different from everyone else.  I don't want to feel like I'm not existing in the same world as the people around me.  I don't want to feel isolated anymore.  I don't want to watch my husband busting his ass on the house and be physically, completely unable to help him.  I don't want to feel like he deserves better ... I don't want to feel like some healthy, skinny girl is going to come along and lure him away because .... after all ... she's not sick or fat. 

I feel like a loser.  I don't want to feel like a loser anymore.  I want to feel like a normal human being.

Monday, June 3, 2013

No one should be allowed to mess with my life!

I want to scream and shake my fists at Kaiser.  I emailed my rheumatologist with info about my joints screaming in pain, the continued issues from before, how I feel worse than ever, etc.  I feel worse than the worst days of radiation.  Honestly ... I do.  I'm just getting really good at pretending nothing is wrong.  I don't want to be "that" girl.   Anyway, I emailed him and was pleased to see that he wrote me back at 9:17PM last night.  But, that happiness was short lived.

His email stated he believed my joint pain was withdrawal symptoms from prednisone.  Hmmm.  I stopped taking Prednisone at the very least 2 months ago.  8 Weeks, at least.  If not more than that period of time.  I did taper a bit quickly because I was told to.  I was angry.  I was lying in bed, sore, miserable and now pissed off.   I wrote back that it had been two months, that I feel worse than ever and that this isn't normal.  I explained that while he may look at me and see an overweight person, just before all of this I was very active.  Working out, hiking, eating good, etc.  I was doing 5ks and hoping to do more than that this year.   Now I can't even do the simplest of things without feeling like I ran for a week straight and need to sleep for a week straight.

This morning there was an email from my rheumatologist saying that he needs to see me in his office.  So ... I got an appointment for Thursday morning.  I'm prepared to go in there and not let him brush me off.  So far I have spoken with at least a dozen people (via email) that I have met on the Wegener's Granulomatosis forum that were diagnosed even without a tissue biopsy.  All their biopsies were inconclusive, but they had blood test results and signs and symptoms that were increasing.   So many of them are urging me to go to UCSF and speak with the specialist for Vasculitis.  And, I want to.   However, I am sure Kaiser will NOT authorize that or pay for it and I am not exactly in the position to be racking up thousands of dollars in medical bills.

My inflammation blood tests were high.  Hmm, sounds like a red flag to me.   I had a high proteinase-3 blood test ... another pointer to wegener's.  I have all the signs and symptoms, sinus problems, ear problems, eye problems, joint problems, constant coughing and sneezing, feeling like I was run over by a truck and unable to shake that, getting winded easy ... hmmmm sounds like I should be getting better taken care of. 

Please ... please I am begging whoever would listen.  Please let me get some kind of relief soon. 

Sunday, June 2, 2013

Well, Hello There

I guess I can't call myself a very good blogger if I go for days at a time without writing anything.  It isn't as if there is nothing to rsay.  There's plenty of things to say. 

First and foremost, we are officially completely moved.  Now, I can't say that we are moved "in" completely because there are mountains of boxes everywhere and there probably will be for a long time since both hubby and I work more than 40 hours a week away from the house.  It doesn't leave a lot of time to decorate and unpack when both of us find ourselves needing to "relax" when we come home or, in my case, before we go to work. But, the old house is empty.  In fact, new tenants are already signed up to move in.  It happened overnight!
Oh ... the old house.  I was there on Friday, that last day, helping Dan.  The house was empty.  The rooms seemed big and open and suddenly, I was overwhelmed with sadness about leaving.  I had lived there longer than any place I have lived in, other than the house I grew up in.  It had become my home.  Yes, I knew I'd prefer to have my own house that I owned but it had become the place where I felt most at home.  I'd come home from work after a hard day and feel myself unwinding when I came in. 
So, yes, I was sad, standing there in the middle of the house looking at the empty rooms.  I had 5 years of memories swirling around in my head.  I would miss that house, I would miss the neighbors, I would miss everything about it.  It was a sad moment for me.  I hate goodbyes ... even to a house.
However, now ... I am happy to be in the new house.  I am looking forward to decorating the new house.  It was a moment ....

And now ... the other part.  My health.  It's always about my health.  Honestly, I am tired of telling people I don't feel good.  I'm practicing my normal smile, acting goofy and pretending I feel normal.  It's coming along I think ... however, internally I am dying.
Not literally dying ... not yet anyway.  I'm just miserable.  I have new symptoms.  Arthiritis.  Seriously.  I wake up unable to move my shoulders, the intense pain, the sharp pains if I try to use them.  It's not just the shoulders either. My elbows, wrists, knuckles (including the small joints of the fingers), my hips, knees, ankles and toes.  The agony is horrendous. 
No ... it's not from working out last Monday.  This started before then and the working out was the kicker to send me over the edge I guess. The pain will NOT go away. Unless I take heavy drugs.  I got a shot in my ass on Thursday.  That made everything stop hurting until the middle of the night when I woke up in pain again.  Kaiser screwed up the prescription for the pain meds too so I haven't yet been able to take them. 
Oh ... and I had more blood work done.  They tested me for inflammation.  They did two important tests that would show indicators for Wegener's.  Wegener's is an inflammation disease.
Guess what?  My results were double the "high normal" range.  Double.  I guess I'm a walking tower of inflammation.  And ... the doctor strongly advised me to get back in touch with my rheumatologist because at the very least ... I have major arthritis in my joints.

At 33.

So, I got cancer that only old people get and now I have arthritis or ... the more logical explanation:  I've had Wegener's all along and it's spreading into my joints now, another key indicator that there is that disease there.  Again, thank the heavens it hasn't decided that my kidneys are a cool place to take up residence but .... this pain is too much.
I literally sit here and whimper like a puppy.  I have a high paint rhreshold with things like this and I find myself in tears a lot, whishing for peace.  I just want to feel normal.  Is that asking a lot?  I don't want to hurt, I don't want to be dizzy and nauseous, I don't want to cough, I don't want my sinuses to hurt like I was kicked in the face, I don't want bloody mucus, I don't want bloody noses, I don't want this anymore.  

So ... to sum up?  I'm happy to be moved, and sad to still be sick.