Photo Sunday, slightly delayed

We're just skipping over the awkwardness of how I'm doing and going straight to photo Sunday.  And yes, it's Wednesday.


If you've read this blog at all, you know that I'm very anti-Dallas.

But I swear my little neighborhood, Deep Ellum, makes me feel like I could be anywhere- Austin, San Diego, Denver even maybe?  It's so angsty and anti-establishment it, even I feel like an artist.  :)

I've been doing pretty well with my required pt at home.  The walks are the hardest part, but I distract myself by trying to find cool little hidden niches.  This Sunday I decided to snap a few pics for you guys to get a healthy taste of the only acceptable place to live in Dallas.

Seems like you can hardly find a lamp post or street sign here that hasn't been defaced in some way.  The original art is always entertaining, but I have to admit that I have a thing for an appropriately placed sticker tarnishing a shiny new stop sign. :)

Band posters are ever intriguing to me, and you can find them everywhere in this area- a tribute to the streets that have been considered a musical hotspot in the South since the 1920's.  Those ghosts still haunt the area, and regardless of the ebbs and flows of popularity, the roots are deep and music venues monopolize the area. 

The other third of the businesses you'll see in Deep Ellum are tattoo parlors, much to my heart's delight.  In my mind, tattoos are closely linked to the kind of dissent that keeps a country honest with itself.  I saw a documentary some years ago (was it Sicko?), and I remember distinctly a woman from it saying, "In France, the government is afraid of the people.  In American, the people are afraid of the government."  I know that France earned that right with years and years of rebellion, which I hope America is on the cusp of.   

At least in my neighborhood, I feel like it could be a possibility. 

After walking around  for a while

and seeing so much cool art, 

I was inspired to take a few artsy photos of my own....

of the dog,

a cool old newspaper I found, 

even a sign that I found ironic. :)

 By the end, even the "Visit Myrtle Beach" sky-writing seemed like art. :)

-MM

Marathon Post

So I'm talking to my therapist, who asks if I am blogging.
"No," I say.  "Every time I open up to my blog I just think, Ugh. I don't even have the energy to deal with this life." Because it's so much, isn't it? Even if you don't have cancer, even if you don't have chronic pain, life is SO MUCH to deal with.  Just the every day of it is enough to wear me out sometimes.

Also, of course, are the drugs.  Woohoo I get loopy.  No memory of what I was supposed to be doing. I forget what time my appointments are.  And I think I spend way too much time sleeping, but it's hard to control on these meds.

Lots of people have been asking: A. what's the deal with the diagnosis, B. how's your pain and C. what's going on with you?

The diagnosis is easy to answer. Arthritis throughout my back, and degenerative disc disease.  Spinal stenosis in two vertebrae, one cervical and one lumbar.

The good news is that through the magic of Hollywood and Bobby's very special magic finger skills, we have actual pics from the scans.  Pretty friggin cool if you ask me.

So this is me... my spine.  As if I am sitting in a chair and you are standing, looking down my spine. The bright white circle (and all of this is from memory, so please note that it's probably all wrong lol) (also please correct me in the comments if you know what I said wrong) anyway the bright white circle in the center is my spinal cord. I guess those little dots are like nerve fibers.  But in this pic you can see how it should be, in a circular shape.  This part of my spine has no damage, its protected in it's round shape and isn't being touched.

These next two photos show other parts of my spine- these are both lumbar- where the disc and/or the vertebra bone has begun to close in on the nerves, forcing it into a triangle shape instead of the oval its supposed to be.

Is that as crazy to y'all as it is to me?  I mean it's actually there in black and white. There is actually something wrong with me and we've found out what it is.  Somebody write this on a calendar somewhere.  :)  In all seriousness, though, Dr. Callewort was amazing.  He took so much time to talk to me and explain everything.  He asked lots of questions and let me ask lots of questions.  His explanations were clear and he was so reassuring as to why I'm in so much pain.  It was very comforting to hear.  He also did a little test on me because Bobby kept telling him over and over that I have a high tolerance for pain.  Turns out, Bobby is actually right. lol  The good doctor said I only feel about 2/3 the pain of the average human.  I always knew I was tough. hahahaha

Anyway, here's another view of what's going on, this time from the side.

So the line of two dark columns in the middle- the one on the left are vertebrae and the one on the right is muscle if memory serves me right.  Notice the layer of bone and disc tissue, and the width of the disc tissue. Also note the 3rd disc from the bottom, how it is jagged and very thin in some areas, even with swelling in areas, as seen in the top pic of these two.

So there's that.

B. The pain
also released in Europe under the title Pain, Pain Go Away, Come again another Day


People keep asking how the pain level is, and I do have to say I'm better.  But, as always in health, it's a bit more complicated than that.

You know how I know I'm a nerd?  I made a line graph to explain my pain levels.

There's just something so gratifying about a graph that explains my pain.  Even if I did put too many blue dots in. lol


C. What's Going on with Me

Jeesh, that's a whole other blog post.


Praying for us all,
-MM

I should buy a boat

Wow, a lot's happened since the last post.  Let me wrap it up for ya:

1. finally got a for-real diagnosis

2. got a Rx for physical therapy

3. got new stuff to help deal with anxiety

4. got the pain much more under control, but I'm a little loopy all the time these days....

and, perhaps biggest of all, I write this knowing that tomorrow I'm going in to work to tell them I'm staying home for a while.  Yes, I am going to start my time off for disability tomorrow.  It sucks.  I don't want to do it, but I missed three days last week and I'm still not in
any physical condition to go back.  That says to me (and Bobby) that its time to face reality. 

 I cried a bit tonight after we talked about it, but I have to admit the state my body is in.  The pain has increased significantly, and even though I have it managed these days, I'm either too loopy or asleep when taking them- not exactly conducive to teaching.  We shall see what the days ahead bring. 


But I'm going to miss my kids.  


In the meantime, I'm asking for your thoughts and/or prayers.  I'll post more about the actual diagnosis and stuff soon.... just wanted to stick in an update on the mental aspects.  I swear, being sick is half a mental battle and half a physical one. 

I also want to thank my special friend who sent me a lovely plant.  It gives me something gorgeous to look at when I'm laying around.  And it has such good energy!

 Bobby is taking really good care of me, and we are getting to know each other in a whole new way. :) It's actually really funny the majority of the time.  He keeps reminding me that "this is temporary," and that's really helping.

Lots of love, and I hope all of you are doing well, too.

-MM

Yes

Every once in a while, all of the power- the attention- that you have comes to bear on exactly what you're doing. And it doesn't decide whether it's good or bad, it just decides that it is.  And the only thing you can do is enjoy the ride. - Ken Kesey

Whomp whomp

It's been almost two months of being in pain.  I'm not sure how long I've been using the wheelchair, but I'm like over it.  For real.  I've known this whole time that my mental state was slipping.  I told friends that I felt like I was losing it a little bit, but it never really seemed that serious.

But for the last week or two I've felt like I was always 5 minutes away from the worst car wreck of my life.  Panic, I think it's called.  Yes, that's it.  Panic. 

I had dinner with the my cancer support group, and everyone started to talk about PTSD. 

Ugh.

So here's the run-down according to http://depressiond.org/ptsd-symptoms/:

The person has been exposed to a traumatic event in which both of the following were present:

(1) The person experienced, witnessed, or was confronted with an event or events that involved actual or threatened death or serious injury, or a threat to the physical integrity of self or others
(2) The person’s response involved intense fear, helplessness, or horror.

Um, yes.

B. The traumatic event is persistently re-experienced in one (or more) of the following ways:

(1) Recurrent and intrusive distressing recollections of the event, including images, thoughts, or perceptions. 

(3) Acting or feeling as if the traumatic event were recurring 

Number 3 is a big one.  I've literally told people that I feel like I'm watching myself go through cancer treatment again, but in slow motion this time.  I'm more able to think about what kind of a patient I want to be, and how I want to approach the pain. 

(4) Intense psychological distress at exposure to internal or external cues that symbolize or resemble an aspect of the traumatic event

(5) Physiological reactivity on exposure to internal or external cues that symbolize or resemble an aspect of the traumatic event

Can you say panic attack outside of the MRI office?

C. Persistent avoidance of stimuli associated with the trauma and numbing of general responsiveness (not present before the trauma), as indicated by three (or more) of the following:

(1) Efforts to avoid thoughts, feelings, or conversations associated with the trauma
See avoidance, below :)

(2) Efforts to avoid activities, places, or people that arouse recollections of the trauma

(3) Inability to recall an important aspect of the trauma

I don't know if #3 fits or not.  I just know there's lots of moments from when I was on Interferon that I don't remember.  But I don't think any of it is especially important.  

(5) Feeling of detachment or estrangement from others

D. Persistent symptoms of increased arousal (not present before the trauma), as indicated by two (or more) of the following:

 (1) Difficulty falling or staying asleep....We're talking about me, people. I can sleep standing up. lol

 E. Duration of the disturbance (symptoms in Criteria B, C, and D) is more than 1 month.

 F. The disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning

So, I don't know.  According to this website, I don't have PTSD.  But I do have some of the symptoms, and I have been having serious panic attacks, especially when I have time on my hands to think.  I've slowly been getting worse, even though Bobby and I have been having the talks about what's going on.  The sit-down talk of the night was: you're not realizing this is temporary, you're acting like you've been dx'ed with cancer again, you have like these crazy emotional walls up, and you've exhausted all your means of escape.  Ugh again.  

But I just gotta use my tools:

1. meditation

2. positive thinking

3. affirmations

4. therapy

5. possible medication

6. physical therapy or whatever it's going to take to stop this blasted pain

7. being mindful

8. expressing gratitude

9. staying connected to peeps 

10. telling myself I'm worthy of help, and asking for help when I need it; also not feeling "wrong" or "bad" when I receive help 

If I do those things, I'll be fine.  It's hard, because I doubt it when I say it, but I'm going to get through this.  This is temporary.  

Efforts to avoid thoughts, feelings:
Talk about avoidance.  My latest has been fantasizing about moving away, alone of course, and finding a tiny apartment in a town where no one knows me.  I'll move somewhere cold, where it snows every winter, and I can bundle up and look out across the clean, white streets.  Some where so far away that I can have nothing wrong with me.  No doctors, no appointments.  I can be anybody.  I can be the shy loner girl.  I'll lose 50 pounds and smoke cigarettes and be mysterious and quiet and everyone will wonder what my story is.  But best of all, out of all the wonderful parts of this story, the part I love the most is that none of the people I love here have to watch me go through this.  I'll be two thousand miles away. I won't have to feel guilty for every extra minuscule effort they have to put forth to in some way help me.  I won't have to doubt every moment that I'm not making myself somehow invisible.  

It's gut wrenching.  It's gut wrenching because not only is it the perfect little fantasy complete with snow and a shy loner, but I don't even really want that.  I just want this.  I want my life the way it was 3 months ago.  I want to feel safe in my skin. I want to WANT to curl up next to my boyfriend. I want to stop crying when I realize I'm alone and there's no one to distract me. 

And, dammit, I will.  SOON.  Or someone is going to pay.  hahaha

-MM

Aha Moment

“For a long time it seemed to me that if I could just endure a little longer and be patient, I could resume my life. But it was one disease after another. It seemed as if I was taking one step forward and then [one step] back- always an obstacle in my path to good health. Then, at last, it dawned on me that these obstacles were my life.”


Great article: http://www.cc.nih.gov/ccc/patient_education/pepubs/copechron.pdf

This is me making peace with my body.  :)

-MM

Jenius

It has been a rough week.  I am now using a wheelchair.  Some days I feel pretty good and have just a little pain, some days it hurts too bad to stand.  I feel confident that by next week I will be out of the wheelchair and able to walk again, at least for a week or so.  Lately I've been expecting this sort of setback very on schedule and just kind of deal with them.  :)  So.... this is what's up.  Physically I suck.  Mentally, I'm much less bummed about it than last week.  At this point, when I AM upset, I really feel more inconvenienced than anything.  But I'm still living my life, and I can still teach, so I'm happy.

I was told last week, by someone that I never expected to be comforted by, "Be patient, God has a plan for you."  I don't know what she means, but it feels really good to hear that.  I don't even believe in the traditional form of God the way that she does, but I do believe that there is a purpose here somewhere.  What if all of this is my destiny?  How could I be mad and argue with my destiny?

I'm happy to be able to do what I can do, I'm blessed by amazing people in my life, the weather has been almost inspiring it's been so beautiful, and TinyBuddha.com says that "You can be who you want to be right now, no matter what your situation looks like." So dammit, I'm going with that.  Just thought you might want to know, since the last time I was on here I was throwing a temper tantrum.  teehee

I'll close with 2 fabulous pics, and 1 fabulous quote.

* 

muchos besos,
-MM