Friday, October 31, 2014

Want Versus Need

Hello Boys and Girls,
Today we are going to discuss the differences between wanting to do something and needing to do something.  The two are not the same.  Sometimes, in rare occasions, someone can want and need the same thing. What results in that equation is a happy person. They are doing what they need to do and it happens to be something they want.   I envy those people.  I am going to do my best to be one of those people. 


Well, let me tell you a little story about my lifestyle changes over the past year.  Oh, I was really super smart and cleaned up my eating in April.  Unfortunately, I focused TOO much on the weight that was dropping versus the health benefits that it was providing.  I mean, I knew it was doing something for me because I felt good and stopped taking my medications because I felt better when I wasn't on the medications.  Some may say that was a bad idea but, I preferred to go 7 days a week feeling normal versus three days of feeling like a truck ran me over and 4 days of smooth sailing.  Even with how good my health was, I was still completely and totally obsessed with the weight loss portion, weighing myself every day and obsessing about every bite into my mouth.  Do you know what happens when you're solely focused on weight loss?

You fail.

I tumbled off that clean eating wagon and landed in a pool of warm, melted chocolate.  Mmmm, wonderful right?  Wrong.  I couldn't get back up on the wagon.  I enjoyed every bad horrible thing I put in my mouth.  I enjoyed it too much.  I gained back 20 lbs of the 43 I lost.  Ugh.  What a horrible person that made me feel like!  I didn't "HAVE" to eat that way so I felt like I just wasn't going to.  So there!

Guess what, boys and girls?  Someone like me?  Yea, someone like me NEEDS to eat clean.  Let me give you a bit of an anatomy lesson.  Your immune system, the thing that helps you fight colds, the thing that makes you feel crummy and run down when you are fighting off germs, that's in your digestive system.  Yes, the tubes that snake around in your belly, changing food into poop, that's your immune system.  If that's not healthy, you aren't healthy.  So ... clean eating, eating only whole foods that aren't manipulated, is the perfect thing for an angry immune system.  Non-inflammatory foods will reduce swelling in the gut.  Not to mention, Wegener's/Vasculitis is an inflammatory disease.  It can cause dangerous inflammation on vital organs. This is what needs prevention.

In light of recent events, including a scary trip to the ER, spending a week feeling miserable at home, bloody noses, a never ending scab inside my nose, feeling like there's a band around my ribcage, non-stop fatigue ... I will be getting back on my injections of chemo, and ... a temporary dosage of prednisone and ... becoming incredibly strict with my eating.  Not only will I be strict because of the weight gain factors that go with prednisone but ... my life and health depends on eating clean. 

It's a matter of need now.  Want has no part of this equation.  Sure, I don't WANT to live the life that I am.  I don't WANT the disease that I have.  I don't' WANT to be different, to be immune-compromised and a germaphobe.  I don't WANT any of this but you know what?  This is what I have, this is my life and how I have to live.   This is a need ... regardless of how I feel.

Goodbye Sugar, Goodbye Sodas, Goodbye Carbs, I might miss you at first, but I won't miss anything else about your existence in my life. 

Monday, October 20, 2014

1-2-3 Squish

Today marked my annual visit to the oncologist to make sure that everything is good.  As far as I know, everything is.  I will continue to think that even as I head down another trail of tests and exams, all purely precautionary, and yet it still just ignites that tiny spark of fear that lives in my brain.  Oh, who am I kidding? It's not a "tiny" spark of fear.  It's an elephant trying to cram itself into a clutch purse in the back of my head.   All I have to do is think something halfway not positive and the worry elephant begins his happy dance of flailing legs and trunks. 

Mr. Elephant is dancing.

It's nothing. I'll say that right now.  Let's all get together and say it.  "It's nothing."

There's been this little lump on my chest.  It's on the breastbone but not actually in the ol' boobie.  It's been there for a wee bit, and I never thought much of it but ... it's gotten bigger.  So, then I was like "Well ... I don't know that I like it being there all that much."  Before last year, I would have just said "It's a cyst" and carried on my life. But, Cancer has entered my tiny bubble of existence and I can't just shrug things off anymore.  Nope.  Now I have to have things "looked into."  I had my regularly scheduled yearly check up with my oncologist and I brought it up to him since I was there.  He checked it out and said ... and I quote. 
"It's definitely a lump.  It's definitely 'something'."  Then went to his computer and said "Have you had a mammogram yet?"  Then he said I should have an ultrasound and a biopsy but ,.. then he felt it again and said it would be too difficult to hit it just right with a needle biopsy and would be better biopsied if it was removed.  So ... he is referring me to a surgeon to have said bump removed and looked at.   And ... I go tomorrow for a mammogram.

No I don't think the two things are related.  I have a family history of cancer and should be having mammograms already, per the good cancer doc, Doc Zee.  Oh this will be a fun experience, let me tell you.  You know what else it makes me feel? 


No.  I'm not saying anyone needs to feel old by that remark.  It's not that I am being ageist either.  It has to do with this little mental bubble I live in where I am not almost 35 years old.  I have missed out on a lot of living and while I feel like my life is going nowhere ... time is still going by as fast as ever and I am staring at 35 on the horizon.  Halfway to 40.  There is a hill in the distance and I can see the top of it.  It's time to get real about my life.  It's not going anywhere.  This is where I am going to be forever.  Time to put my big girl panties on and deal with it, right?


Tomorrow I will embark on a new chapter in my life, adding a new procedure into my repertoire of procedures.  The ol' boobie squish.   I've joined that club. 

Well, here is to procedures that yield nothing, right?  My mammogram will be perfect and they will remove said annoying lump from my chest area and tell me it's the cyst I always believed it to be.  Because, I will thnk positive.  After all, cancer came out of left field when I wasn't expecting it.  It's not going to come when I am thinking it might be there again. 

It couldn't.  I mean, I am going to have to live the rest of my life in fear of cancer coming back.  That's what happens when you have it.  That's part of life.  It can come back.  It's checked in once, it's a member now.  There's no rule saying it has to stay away. 

It's just not back yet.  I am going to believe that to be true and it will be. 

This is all just routine.  My new routine.

Tuesday, October 14, 2014

Pills, pills, pills

I've never been a pill popper before. Sure, I'd take the occasional ibuprofen or "The cocktail" (2 excedrin migraine, 3 Tylenol, a Pepsi and a Snickers bar) to combat the massive tension headache that work could produce. But other than that, I wasn't a fan of swallowing pills. I wasn't good at it. Inevitably, one would get stuck in my throat causing me to gag and get a lovely taste of said chalky pill. *shudder*. However, since last year and the subsequent procedures, surgeries and joint pain, I've become a pro! Except, I still hesitate to take them.

I should be taking at least 7 a day. 3 thyroid meds, a folic acid, a multivitamin, 2 magnesium supplements. Now I'm adding in Biotin since my hair seems to have ended a relationship with my scalp. Strands of hair are jumping off my head at a higher rate than people jumped from the Titanic.  So far its only noticeable to me. Anyway. That's not why I'm writing this.

I need painkillers. Not just ibuprofen or Tylenol. No. I need something stronger. norco? Dilaudid? Percocet? Something to dull this pain and let me sleep.

It feels like the right side of me was hit by a bus. OK, all of me feels like that but it feels like I landed on my right side. The joints of my toes, my ankle, my knee, my hip, my wrist, elbow and shoulder are in agony. My knee is a balloon. The left side is mildly achy. 

Being a girl with my condition I sit here contemplating the explanation for this pain. I worked out today. But, I know that pain. I have felt uber lousy for weeks now and it could be just a part of whatever I'm fighting off or ... And this is the kicker ... It could be the bastard Wegeners deciding to remind me who is boss. Preferably its the first option. I worked out and combined with feeling like I've been at war with the common flu, I feel worse than normal.

Who knows? I was rescued by my buddy, Tom, who stayed at work for me and I got to leave. I'm beyond grateful. I just wish I had something narcotically pain relieving to help with the sleep part.

I've been battling my nose for weeks. Its painful as hell, crusty and running at the same time and occasionally likes to allow blood to just spew down my face like a leaky faucet. It isn't pleasant but it is managaable. The joint pain? Oh god this is a nightmare. I feel like a hunched over old witch. I walk like I am a lead on The Walking Dead and even opening the door when I got home made me wince and want to cry out (that would have scared the neighbors, eh?). Why joint pain? Why this misery?

I know what to do to fix this. I just seem to be lacking the willpower to do it. Perhaps this agony will be the butt kick I need? Let's hope so because I cannot tell.

Of course, it could just be option 1 and soreness from my workout and I'll never learn my lesson.

I'm going to lie here now and see what happens. If I am completely still ... Hell it hurts when I'm not moving too.

Goodnight world

Thursday, October 2, 2014

Yes, Reality, I see you.

For the last few months, I have been living in a fantasy world. 

My fantasy world isn't one of castles, dragons and pretty winged unicorns.  Nope, my fantasy world is a world in which I am perfectly healthy and a normal 34 year old woman.  That's my fantasy world.  It looks just like your regular world.  However, a giant needle has come along and shattered that fantasy world from my view.

I haven't felt good for over a month.  I brush it off as being tired (80 hour weeks?), I say I am fighting a cold or a flu, I feel alright the next morning and I charge ahead, and then by the end of the day I am feeling like hell all over again.  But, it can be explained by something else.  There's always another explanation other than the glaring potential reality. 

I have Wegener's Granulomatosis/Granulomatosis with Polyangiitis.  I'm a weggie.  I have cancer.  This is my truth.  I live with it everyday.  I ignore it, even when it is a gigantic elephant in the room.  I don't want to have it.  I hate it.  It's a dumb, stupid, piece of shit, disease that I don't want to have any part of ... so I ignore it. 

Could feeling sick for the last almost two months be because of my disease?  I don't know.  My doctor has been on maternity leave and will be until October 17th.  I've done my blood work but ... like usual, my CBC and crap are fine, and then my ANCA and CRP is elevated.  Same ol' Same ol'.  Of course, the ANCA and CRP are my disease indicators but ... they aren't where they were months ago.  So, it's fine, right? 


The reality is that I have a very serious disease.  I know this.  I've talked about it myself.  I have explained it to people who don't get it and want to push me to do more ... for their benefit.  I want them to know the severity of my situation so that I am not taken advantage of.  But then, I take advantage of myself.  I don't listen to what I am saying to others because I feel like I am in control of what happens to me. 

I learned today that I am not.  No, nothing happened to me.  I'm still feeling absolutely horrific, exhausted, run down and broken but ... I charge on.  Nothing has changed with me.  But, reality has returned to my world. 

Phil died today. 

Phil was one of the first people to say hello to me in our Wegener's forum online.  Oh, that forum that I have leaned on so much when I had questions and weird aches/pains, etc.  That forum of wonderful people that spans the entire globe ... the only people in the world who actually know what I am feeling.  Phil was "Batman".  He was always offering insight, advice, arguments, etc.  Phil would check in with me on Facebook whenever I'd post a new worry in our forum.  Phil would explain that I needed to take what is wrong with me more seriously than I have been. 

I didn't listen to him either, guys.   Andy... he knows what I am dealing with!

And now ... he's gone.  He's been hospitalized since August.  Collapsed lungs, e coli, infection, etc.  Phil battled it all, with his love at his side, our Alysia.  She crossed the globe to be with him and ... was there with him when he crossed into another world.  Alysia kept us informed every day on Facebook, giving us updates and pictures of him in the hospital.  She had just said that he seemed to be doing better. 

So why isn't he here anymore?!

Phil's death has shaken me out of my fantasies.  Granted, he was much sicker than me in Wegener's terms.  He had a great amount of complications that he was dealing with from his Wegener's but he was in remission.  It doesn't make this any less scary for me. 

I have Wegener's too.  I'm lucky so far that I haven't been in as bad a shape as others.  But, I do have it.  It could do anything it wants to me. 

Will I remember this next week?  I don't know.  I ignore my disease all the time.  I need to remember it and take better care of myself.  I need to realize that I am not feeling well right now ... and that's a problem.  Something has been wrong for awhile and I don't want to face that. 

I'm shocked into a weird ... shaken ... uncomfortable reality.  Phil was a good man ... and now he's gone.  Alysia ... you're in my heart and prayers, milady.