Thursday, May 7, 2015

Nowhere else to go.

Here I am again, right back where I started from ...

No. I don't have cancer again.  *knock on wood*  At least, that blood work hasn't come back yet and I missed my appointment with my oncologist so for all I know it's running rampant and I have no idea.  But, let's think positive, shall we?

Well, at least where cancer is concerned.  In the world of Wegener's ... I feel like I am spiraling down the rabbit hole again and everyone else thinks it is all in my head.  Believe me, I wish it was just in my head as well.  

Something is wrong. 

Terribly, horribly wrong.

Am I in the hospital trying to figure out what it is?  Nope.  I'm at work.  I'm trying to continue my life because its clear that the doctors don't really care so why should I, right?

Over a month ago, my throat started hurting bad ... glands would swell up.  I'd sleep and then feel a little better in the morning only to feel bad again at night.  A week and a half ago, it felt like I was finally going to get the nasty cold that my throat had been hinting about for weeks.  I started coughing and coughing and coughing and getting nothing out.  My chest was tight, I felt dizzy standing up.  So ... I stayed home.  I tried to go back to work only to head home after an hour. I called the doctor as things were getting worse and got antibiotics and an inhaler.  Cool.  The doc I talked to said call in if nothing changed and I would need a CT and a chest x-ray.  Wednesday night I was on the line w/ the advice nurse again because now my sinuses decided to protest my body ... and Thursday morning I was back at Kaiser but only got to see a Nurse Practitioner who said that I had a sinus infection and didn't need a chest x-ray or a CT of my sinuses.  I was given a steroid nasal spray even though I said I didn't want that because my nose was in agony and the nasal sprays only make it worse.  I was given a different antibiotic as well. 

Guess who ended up in the ER Saturday night? 

Yes.  This girl.  I couldn't stop coughing, I couldn't breathe.  It felt like my lungs were, quite literally, on fire.  I kept expecting to open my mouth and have flames come shooting out.  The pain was awful ...

The ER ordered the x-ray ... but really, there was nothing of course so ... I was sent on my way again with a steroid inhaler and a small dose of prednisone. 

Wednesday night it felt like someone too a very hot, very sharp blade and slid it between my skull and spine, separating the two.  The pain is unbearable.  It burns at the base of my skull and radiates up the back of my head.  Sometimes, my shoulders also feel the same pain.  It makes me think it's a nerve thing but ... I can't get my chin all the way down to my chest.  I emailed the doc and was told to go get labs done today.

I did that.  But ... I also started coughing up blood again today. 

I'm having flashbacks of early 2013.  Things are not good.

I came back to my desk after another little episode with the ol' blood in my spit and got a major dizzy spell and that pain has returned to the base of my skull.  I am sitting here trying not to cry.  I'm trying not to feel like I am in trouble.

Honestly, I complain so much lately that I find myself trying to mask it.  Smile, nod, be polite, don't make waves.  Don't cause a burden.  I hear what people say when there is a sick call.  Nothing makes me feel worse emotionally than having to call in sick right now and cause an even bigger burden to our already strapped center.   I hear how upset people are, I hear how tired they are of working. 

I'm scared.  I'm frustrated.  I feel very alone.  A lot of what goes on stays inside and never gets let out. 

All I want right now is to be taken seriously.  If I have to spend a day or two in the hospital while they run every test imaginable ... I would do just that.  Even if those tests are excruciating. I just want someone to be able to say "It was (wegeners or something else I don't care) and we will take care of it."  Instead of, "we can't find anything, I'm sure you are fine."
That's all.  I want someone to acknowledge that I am SICK!

I am sorry to vent here but ... it's my blog and I have nowhere else to go.  Everyone else makes remarks that push me to the 'get over it' sort of feeling.  I'm scared and I feel terrible.  I just want to know why and to take care of it. 

Am I asking too much? 

I feel lost.  I feel alone.  I am so beyond over this that it isn't even funny.  No, I'm not a cancer patient, I am not going through chemo or fighting this major battle that everyone is familiar with and sympathetic about anymore.  But, I am still fighting every single day and I hate how I am being treated. 

I just don't know what to do anymore.