Gah. I'm pretty sure that when a patient says "it hurts to stand, it hurts to walk, please prescribe me a wheelchair," the correct answer ISN'T "we'll discuss that at your next appointment in a few weeks." *sigh* I'm trying to believe I got that response because it's the first time she's seen me and the records from GA haven't been sent yet.

On the good side, I'm under 200 pounds again. Yay! And all of my meds have been refilled. They gave me over 350 Tramadol pills--at my current rate of consumption, that's 45 days. It's the largest pill bottle I've received from a pharmacy.

I broke down and rented a wheelchair for the month. I can't get it up the stairs and into the house, but at least now I can walk the dog and use it when we go out. Thankfully it's significantly lighter than the 25-year-old hand-me-down chair mom let me borrow over the summer. It also has functioning brakes--dad broke the brakes off the old one. Now if we were just living at ground level, things would be good. That's the downside of these vacation rentals.

The EFMP paperwork should be done by my next appointment, and then we can get moved up on the housing waiting list. That will also help with getting a prescription chair, most likely a powered model.

When I left the ER yesterday, the Nurse Practitioner was adamant that I see my doctor today. Do not wait for the scheduled appointment tomorrow, do not pass Go, do not collect $200. So, even though it's a 30 mile drive each way, I made a special trip in to base today to see the doctor.

No dice. The appointments clerk decided I didn't need to see the doctor today after all. Her attitude pretty much consisted of "you got your painkillers, what more do you want?"

Thing is, I don't want painkillers. I want the pain to stop. I want someone to design a treatment program that is going to fix what's wrong with me and let me live a normal life, not a life doped to the gills in hope of becoming bearable. Take xrays of my back to see how far the spontaneous fusion has progressed and figure out how to stop it. See if surgery will reverse the damage, or at least straighten out the kyphosis. MRI the lumbar region and see if this spinal stenosis or cauda equina syndrome causing the increasing leg pain, and see if surgery will keep me out of a wheelchair a little longer. Fix the herniated discs. Use a dremel on the bone spurs, if that's what it takes. DO SOMETHING.

What more do I want? I want my life back.

On the good side, I'm now fairly confident that if I've got a feeling that something is "wrong" and I need to go to the ER I'm going to be right about that. BP 148/90 (136/98 when I left, normal for me is 110/70), 101 fever. The NP wasn't sure if it was a bad reaction to last night's MTX dose, withdrawal from the Ultram (ran out Friday), reaction to the pain levels or what. I'm to go back tomorrow to talk to my medical team.

On the good side, I'm going to be seen regularly at the Navy hospital, instead of being outsourced to various civilian doctors. This is a huge relief to me; I'm not all that confident in my driving any more, and the thought of exploring Jacksonville in search of dr offices wasn't sitting well. It also bodes well for medical necessity popping us to the top of the housing list.

New Year's Eve 2009

Yep, this is what I look like now.

I didn't battle my disease; it battled me.

I've had to cut down on my painkiller consumption to make it through to the next doctor's appointment. It's made me more aware of all the aches and pains and limits.

I can't hold on to a paperback book for more than twenty minutes or so before my hands just hurt too much.

Is there anything this disease isn't determined to take from me?

Happy new year!

May your candles light your path wherever you go, laughter be the most plentiful music to your ears, and life bring you all the love you wish.

Would it surprise anyone to hear I often feel like such a fraud?

I keep getting comments telling me how brave I am for dealing with my conditions. Thing is, I'm not. I'm not facing this crap with grace and equanimity. I'm angry, scared, whiny, hateful, screaming, crying, hurting and trying not to go fetal more often than not. More than anything I want to go hide, curl up in my room where I won't be a burden on my family or an eyesore for the world at large. I want to crawl under the covers and never come out. I want to be held and told I still deserve love even though my body is falling apart. I want the magic drug cocktail that will make the pain go away.

I'm trying to accept that most of the things I want will never happen.

But I'm not brave.

Dominoes Everywhere for the holidays from Jared Lyon on Vimeo.

Happy winter holiday of choice! May the new year bring light, love and laughter to all of you.

One of the joys of moving as a military spouse is you have to get the stickers on your car switched at each new base. So today I went in to handle that little chore. I bought myself a new scarf yesterday that doesn't have skulls on it in hopes of getting around being called "pirate lady" by random people (I wear scarves out in public to cover the bald spots the methotrexate's given me).

So I'm standing in line and two of the vehicle registration clerks start having a conversation about whether or not I'm Muslim, and if I'm a threat to the base. Yes, they were loud enough that I could hear them clearly from the other side of the room. As I was leaving I asked the clerk who'd helped me to let his buddies know I wear the scarf for chemo, not religion, and they should be ashamed of themselves.

I understand that ever since the Fort Hood business people on military bases have been a bit jumpy. I suppose I could have had a weapon hidden in my walking stick. Still, how the hell did they think it was acceptable to hold that kind of a conversation in a public service position? I wish Andrew had been there, since he's got enough rank to administer a well-deserved ass chewing. As it was, I was really, really tempted to exaggerate things a bit and thank them for "a reminder that I'm dying 2 days before Christmas" before wishing them happy holidays.

I really need to work on a good comeback for this, since it's bound to happen again.