Moving Update: Three Weeks Left

Ah moving. A universally disliked and bemoaned process – whether it is a “good move” or a “bad move” the only thing truly enjoyable about a move is when it is over.

For the past week or so, I’m a little turned around on how long it’s actually been since I got the news, we’ve been going through every room in the house for three categories: stuff to sell, stuff to throw away, and stuff to keep.

We have now been through every room in the house. We have a major load to take to recycling and have thrown away huge amounts of trash. We have been selling some items on craigslist. And we are having a yard sale June 6-7.

This is what the picture is of – all the stuff for our yard sale so far. We have some furniture items and some things we haven’t sold on craigslist to add to the pile. But the yard sale section of the garage is starting to take over the garage! I’m glad we decided on a two-day yard sale!

So wish us luck. What we can’t sell, we’ll try again with craigslist and/or donate to the Idaho Youth Ranch. But we’d like to make money to move, so hopefully people are in a “buying our crap” kind of mood. Here’s hoping!

Mad Dash for Medical Care, or Honey You Can Only Get Sick for 2 More Days

The last business day of insurance. There are two more days of picking prescriptions up from the pharmacy. By the end of it we will have spent several hundred dollars in co-pays and we are so happy to do it! We will be among the lucky to have a supply of medications to last until…

Until insurance happens? Until a medical miracle?

Here’s a miracle for you:

I got a letter in the mail from Principal Life saying my benefits have been approved through the date of my Independent Psychiatric Evaluation. If they determine I have a disability (don’t anyone hold your breath, I don’t want anyone stroking out) I will be approved for benefits through 2049.

You read that correctly 2049.

Let’s play make believe and say for some reason that happens. We could afford COBRA because our new living arrangements will be costing us only a fraction of what we are currently paying – including utilities, the whole bit.

Then let’s make a magical jump to that post I wrote earlier in the week, the one about the dream. And I was running with my dogs for hours in the rain. And I woke up smiling.

I’m smiling now. Sometimes even grown-ups play make believe.

A different kind of list

Things I wish I could do before I leave Boise, but am physically unable now, but am glad I got to do at least once…

-Climb up Camel’s Back and watch the sunset
-Sit in the park early in the morning and watch the hot air balloons take off
-Float the Boise River
-Run on the Greenbelt
-Bike on the Greenbelt
-Swim at Lucky Peak dam
-Dance at the Balcony
-Stand for hours with my sweetheart on Friendship Bridge
-Run around playing in the autumn leaves on Boise State campus
-Steal plates and flat wear from the Boise State cafeteria for no good reason (you have to be able to move fast on this one)
-Drink too much wine and dance like an idiot at a St. Chappell Winery Jazz Sunday and end up on the evening news (oops)
-Go to an Idaho Shakespeare Festival Play and sit on the grass in the “cheap seats”
-Play endless Scrabble games outside Goodies in Hyde Park with your friends, debating whether naughty words can be used in the game
-Go see a local, live musician and sit or stand or dance through the whole show
-Read for hours at a locally run coffee shop, sipping coffee and getting free refills, not caring what kind of chair in which I am sitting

Before I leave Boise list

I made a list of things I want to do before I leave Boise. This is a running list, so I may be adding to it. I’ll also check things off it as I go.

-Eat a DK donut (check 5/27/09)
-Go to Julia Davis Park (check 6/7/09)
-Put my feet in the river (check 6/7/09)
-Have a ritzy martini at Red Feather (check 6/7/09)
-Eat at Mai Thai (check 6/6/09)
-Have drinks with friends at 10th Street Station (check 5/28/09)
-Smell morning (check 5/31/09)
-Go to Dawson Taylor (coffee house)(check 6/5/09)

Manners

The subject is manners.

Part I. Thank you.

Thank you to my mom (and dad) for so generously helping with our move and to my brothers for lifting – they may not all know about this yet.

Thank you to Melanie for helping with our yard sale. This is going to be fun!

And my sister, thank you for everything. You are doing so much. I love you!

This sounds like an Oscar speech.

Part II. Doggy manners.

This is tough! Our dogs are sweeties. And they have some manners. But we have to have doggie boot camp because it is not enough. They have to be model citizens for what we are getting ourselves into or no one will like them or us! And it will all just be smoother if they have better manners.

But as Caesar the Dog Whisperer says, we are really training ourselves.

And isn’t that we are always doing, anyway?

Another post already? Caution: strong language

Those rat bastard sons of bitches. Principal Life has informed me that they are willing to pay me the rest of my check (through June 10) if I am willing to go for a psychological evaluation.

Fine. Fine. Fine.

It won’t change their decision. And I won’t let it change my opinion about me. I will try to not let it change my opinion about me.

It feels like I’m selling myself. My husband says it’s a sacrifice for our family – money we desperately need for our move to Oregon (and paying bills, etc.). Let’s look at it this way. They are paying me to go sit for an hour and let some shrink ask me questions.

Pieces of shit.

"A dream is a wish your heart makes, when you're fast asleep"

5AM this morning I awoke from a wonderful dream. I dreamt I saw a doctor in Oregon about my pain pump. He had my chart forwarded from my neurologist’s office here in Boise. I explained how it had been put in wrong and never made it into the interthecal space.

He was indignant on my behalf and a man of action. He immediately got me into surgery and put in a new pump, correctly. Then afterwards, he managed the pump.

It worked. I was pain free! At first, I just walked. I was so worried it would all fall apart, like before. But then soon, I was running. I was all bundled up running in the Eugene rain with my dogs for hours at a time.

And then I woke up. What a beautiful dream.

A new turn for the blog

This blog is taking a different turn for awhile. My focus is not on my health, but rather on the tumultuous state of my life. We are moving to Eugene, Oregon and while I’m excited to be moving, I’m not so excited about all of the circumstances surrounding the move, as you can imagine.

I’ve always loved Eugene. Every year I was in debate, we’d compete there. It was always fall and wonderful. Then I got a chance to visit, just for pleasure. I fell in love all over again. My husband and I have wanted to move to Oregon for a long time. We just didn’t plan to be doing it like this.

But life is what happens when you are making other plans, right?

So I am going to be posting randomly. This is one of my “outlets” after all. You might be so lucky as to get three or ten postings in a day. Ha.

PS Back on the neurontin. Will be big as a house soon.

The not so hypothetical

What if you had one week of health insurance left? This is not exactly a hypothetical. In my one last week of health insurance I will be filling prescriptions like a mad woman. What about you? With one week left of health insurance, what would you do?

The day after...

I was asked how I was doing “the day after”. It doesn’t feel like a day. It feels more like a week. So much has happened in this short period of time, it feels like I’m going in all different directions. We are four weeks away from moving.

So how am I doing? Processing. Trying to look at the bright side of life, as the song goes. Trying to keep up with my own thoughts. Trying not to think about how I have exactly one week of health insurance left.

I’m going to be in pain for a lot longer than I had planned.

The decision

It’s official. They decided against me. My benefits from Principal Life are over. I will receive one last check, a small one, pro-rated to 5/21. Apparently, the IME doc said that I could work and I should see a shrink. Thanks a lot. Also, I already see a shrink. But okay.

So here’s the game plan. We are moving. We can’t afford to stay here. My sister has been kind enough to let us move in with her. We are selling most of our belongings in an effort to raise the money for the move and get rid of as much stuff as possible for our new home. We are training our dogs to be more obedient because someone besides just us has to live with them.

All medical decisions are now on hold as our efforts to refrain from homelessness are the prime concern. We will need your help. We’ll be asking for what we need…

"I Am Waiting"

Anxiety. This is my life. As I have intimated before, I don’t know if I will receive my disability benefits from Principal Life after 5/21/09. That is tomorrow. If I don’t receive a letter in the mail, I will call.

One of my favorite poems is called “I Am Waiting” written by Lawrence Ferlinghetti. A few lines are a good summation to how I feel today. There’s a link to a site with the entire poem if you are interested (in the title of the post).

“I am waiting for my case to come up
and I am waiting
for a rebirth of wonder…
and I am waiting for the Age of Anxiety
to drop dead…”

Indeed.

A not so small win

It may be a small thing, but yesterday I went to see my first movie in an actual theatre since seeing the Simpson Movie in 2007. Victory! I saw Star Trek and it was fantastic! I loved every minute of it. It went by so fast – and I was not in unbearable, excruciating pain the entire time. I was actually having a good pain day! Days like these list my spirits and make me feel a little more normal.

All I ask of you

I have a favor to ask of my readers, which of course are mostly family and a few friends. Please don’t feel bad for me. A lot of you have expressed this to me in some form or another and while I appreciate you thinking of me, your words of encouragement mean so much more.

I know sometimes my posts are just long bitchfests, but that’s just to vent, my healthy expression of emotion (that doesn’t involve my dogs or husband having to listen to it). But in reality, and I try to represent this side, too, I am one of the lucky ones.

When I go to pain clinics and doc offices and see other patients, I know exactly how much better I have it. For one thing, I can still bathe and clothe myself – never mind if I choose to wear pajamas all the time. I may have gained a ton of weight through this ordeal, but not like some patients and I definitely don’t have to wear a muumuu. And I can still walk, albeit sometimes limping a bit, but I can walk.

And the all time best thing in the world to me right now – I can write again. Not being on narcotics means I can write! And I’m working on a project about which I am so excited!

So I am lucky, I am blessed. I am grateful. I hope you all see me as such.

Just a rant...

Today I need to vent, rant, bitch, whatever. But first, some perspective. I was talking to one of my dear readers yesterday, and he pointed out just exactly how the situation could be worse. And I keep that in mind and still feel grateful during the following tirade:

It’s not so much the pain. I deal with that. It’s the frustration of not being able to do what I want to do, or that doing so takes me completely out of the game for the rest of the day, days, or week. Example:

-Wednesday I did my last chemistry lab (yes, finally) and went grocery shopping – ice and sleep the rest of the day

-Thursday I did some errands – ice and sleep, but ended up going to bed at 8:30 that night out of pain, exhaustion, and really, frustration

-Friday I did the dishes – could barely move for a few hours after

This just pisses me off. I just get so angry. The pain is fine. But it’s not the pain during the activity that’s the problem. It’s what happens after.

My family is coming for a visit and I am so, so excited. I just want to keep up with them, to not hold them back from having a good time while they are here. I’m so tired of being held back, but I’m also tired of holding everyone else back, too.

"I just don't know what to do with my self..."

School is over – I have to turn in one more chemistry lab, yes still – but school is over. And it has brought to mind the inevitable panic. What on earth am I going to do with my time?

There are still three weeks until the Sims 3 comes out. After that I’m guaranteed to be busy around the clock, in fact sleep, nutrition, and even personal hygiene may suffer!

It got me to thinking about the new life I’ve created for myself. If you’ve ever taken or at least seen a depression inventory, one of the questions is about whether or not you still get enjoyment out of the things you used to enjoy. Unfortunately my answer to that has been a hearty, no. For example, I love to make jewelry, but sitting at the table gives me so much pain it takes all the enjoyment out of it, so yeah, a hearty no.

But I have learned to enjoy other things. I’ve started a new kind of inventory here:

-Knitting
-Reading new authors (Cormack McCarthy and Gabriel Garcia Marquez)
-Blogging
-Digital scrapbooking
-And guess what, since the narcotics are gone, the writing is back!
-Lots of new stuff on TV
-Naptime
-Doggie cuddling

I’m not the only one whose life is touched by an event or events that shape what they can enjoy doing, for good or bad. Any new (or old) hobbies developed out of changes you want to share? (I think this is a version of the Glad Game…)

PS In case you are wondering about the EEG – I won’t know the results for awhile. Assuming all is normal, not until my next doc appt.

Electroencephalography

Today I have an EEG (Electroencephalography). Wikipedia has a brief definition: recording of electrical activity along the scalp produced by the firing of neurons within the brain. My fabulous neurologist I see for migraines has ordered it due to some weird “events” I’ve been having for awhile. Not to freak anyone out, but they are kind of like seizures, but not quite seizures. He is confident it will be normal, so no worries!

The cool part is that they send the reading to him on a DVD and because I asked him to, he is going to show me that DVD at my next appointment. I am excited to see my own brain waves.

But I have to wonder. None of this occurred prior to botched pain pump surgery and subsequent fist-fulls of narcotics afterward. How much of this is directly or indirectly related?

I better not think too hard on the subject. In preparation for my EEG I have to be sleep deprived and now is not the time for serious contemplation! Now is the time for Demetri Martin, the Simpsons, and the Colbert Report.

The Not So Magic Hour

4 AM. It’s the hour of misery. I wake up, have to pee, but then can’t sleep because I can’t get comfortable because of pain. Then the worrying sets in. This fuels the can’t sleep. But here are some techniques I’ve used, and need to remember to use.

-“If you’re worried and you can’t sleep, just count your blessings instead of sleep, and you’ll fall asleep counting your blessings” (my paraphrase from White Christmas)

-Plan all the things I will do when I get better

-Put my iPod back on and let my Chill Out Mix lull me back to sleep

So here’s to getting back to sleep, here’s to conquering 4 AM.

Paralysis

I’ve been feeling a deep paralysis. First, some good news. I got a letter from Principal Life (the company that pays my disability benefits) that said I will be getting paid through 5/21/09 for sure.

Now for the paralyzing factors. After that is based upon the determinations made by the IME, home visit, doc notes, etc. So that part is still up in the air. So I don’t know if I will have an income, therefore I don’t know if I will be able to pay COBRA for health benefits.

I have to find my own doctor to do my stimulator trial and follow-up care. There are basically two docs left. I’ve been to both, loathe both, but will go to them. I put my case before one of them and am waiting to hear back as to whether or not he wants to do this.

But so then will I even be able to do any of it? Without health insurance, nope.
It’s hard to do much of anything without knowing. So I sit here on edge, waiting for the letter that may turn my life upside down.

But please remember one thing:

I'm a bird girl
And the bird girls can fly
Bird girls can fly

Help me with my "Chill Out Mix"!

“And now for something completely different” (well, a little less depressing...)

As I’ve written before, I fall asleep at night, or several times at night, listening to my iPod. I listen to a play list called “Jane's Chill Out Mix”. This music therapy technique is something I started a long time ago, actually the first time in all this I had to spend quality time in a hospital setting. It was and is soothing.

Here is what the playlist looks like right now.

Bird Gerhl - Antony & the Johnsons
The Shining - Badly Drawn Boy
Cry Me a River - Julie London
I Found a Reason - The Velvet Underground
Time Has Told Me - Nick Drake
Lost Cause - Beck
Let it Be Me - Ray LaMontagne
Crash into Me - Dave Matthews Band
Lover You Should Have Come Over - Jeff Buckley
Misguided Angel - Cowboy Junkies
Fade into You - Mazzy Star
Are You Sure - Willie Nelson
You Belong to Me - Patsy Cline
Involuntary - M. Ward

I love music and can never, ever have enough. Are there any songs, pieces of music, you find particularly soothing? I would love some recommendations, the more the better. In fact, if you were to put together a “Chill Out Mix” what would be on it?

Stop and appreciate your neuroreceptors

Way back in 2006 one of the first doctors I saw told me that I needed to get on an antidepressant, because it wasn’t a matter of if, it was a matter of when. I followed his advice and was put on Cymbalta, a medication that is also supposed to help with the pain cycle. Last winter, after I had to take a medical leave from school, I was put on yet another antidepressant, Abilify, as I was at the maximum dosage of Cymbalta.

Things were looking really good. I was stable, not-depressed, moving forward. I had taken myself off Neurontin (and have again since my last post because I’ve been starving all the time) and my doc was concerned that Abilify was contributing to the weight issues and I’d been doing so well, so I tapered off that medication, too.

But in the last week, two weeks things haven’t been going so well. And today I’ve finally noticed just how much I’ve been sleeping! This is more than the “I need a nap because I don’t sleep through the night” sleeping. This is all the time sleeping. And homework isn’t fun. And I can’t plan forward – I have no future thinking at all.

This is one of those crap things about chronic pain management. It’s not just the pain. It’s how the pain affects every part of you, down to the neurochemicals and neuroreceptors in your brain.

Maybe by the next time I post, my dopamine and serotonin receptors will be flooded with enough manufactured neurochemicals to get back on track again.

PS I’ve added a link (to the list on the right) about the pain cycle for those who care to read more about why this is such an important consideration for dealing with chronic pain.