Thursday, January 31, 2013

When it rains, it pours. That's all I can really say right now except if you are inclined to praying, please do so. We could use it as we wait for information.

I know this is vague but it's the best I can do right now.


Wednesday, January 30, 2013

Still Here

Still here..still dealing with a truck load of physical pain. MRI is coming up so I hope it gives some answers without bringing bad news. Does that make sense? I want answers but I worry what those answers will be.

I'm also quite angry at myself because I know I had a hand in whatever changes are going on. I didn't bring them on but I haven't done all I could to avoid it either.

In the past few years I have done waaaaaaaay more physically then I should have. Weight limit was no more than 15lbs and I routinely lift more than that. I mean seriously, a bag of groceries, a bag of dog food, a box of cat litter...all necessary and all more than 15lbs. I was a single mother with two young children and a home full of responsibilities. Yes, I knew each and every time I did things I am not supposed to be doing from a medical standpoint because my back would scream at me afterwards. But I had to do things. This was true even back shortly after the diagnosis. I was good the first six months or so. Following the rules and being careful. But back then, Dakota was in school and I had a two year old and a five year old to care for. Bath times meant leaning over the tub, hurt children meant picking them up and holding them until they were better. Errands needed to be done and chores needed attention. I guess what I'm trying to say, is I had a life with young children to live and I did.

The move this summer. If I had had the money, I would have hired packers and movers. But I didn't. I did 80% of it all alone. And I knew it then, and would tell myself regularly how I would end up paying for it at some point. But denial is a very strong thing.

Welcome to pay back time.

My muscles spasm so much that you can see them twitching under my clothes. The ones in my tummy I nicknamed "the baby" as in "the baby is kicking" because it looks, and feels, exactly like it did when I was pregnant. The numbness comes and goes and travels about on a whim. This week I have had a spot on the right side of my nose that feels like a shock (think touching a live wire for a second) that has been going on for four days now at intervals of 5 to 12 seconds. Yes, I count because In fear some times that it will make me lose my mind. Sometimes, but not always, shifting my weight from the right side of my body to my left (like when I'm sitting or laying down) will stop it for a time. But never for long. I have very little strength in my hands....I can't open a jar or even take the lid off my travel coffee mug. I drop things too often.

The pain has reached a threshold where I doubt my ability to take it much longer. When the kids are at school, or at Dakota's, I pull deep into myself and rarely talk. Saving all my energy for when the kids are here. Try as they might, they don't understand how I feel so I do my level best to suck it up so I can care for them. They are, after all, just children. But it takes all I have.

I cry in the middle of the night when the pain is unrelenting and refuses to allow me to sleep. The pain pills take a small edge off but, over all, aren't strong enough or prescribed at frequent enough intervals to do much. Still...I don't alter the dosage and I try to wait as long as possible in the day to take it. I'm afraid to call in a refill for fear of being labeled a drug seeker and not being given any help at all. My Syringomyelia support group board is full of people who say their doctors don't believe their pain is real, that no one will help them, that their doctors don't even know what SM is.

I've done some research and found the names of two doctors in Portland with SM experience. And two more in Seattle. It doesn't mean my insurance will approve me seeing them though. Knowledge on SM in the medical world is still in its infancy. That alone scares me because when the time comes that I am sent to a neurosurgeon, I want someone who is familiar with the disease. I learned the hard way that I should have done that when I first broke my back instead of trusting my family doctor, who, when asked a year into it, how many other patients with broken backs she had seen answered "you are my first". Lesson learned. I need specialists who know the condition. I would prefer one who HAD the condition but chances of that are slim to none.

So basically, I am not doing well. And that leaves me feeling more emotions that I can name. It's great that the MRI is upcoming but then what? It's not like my pain is going to magically disappear once I've had the test.

Time will tell. It always does.

I'm not re reading this so please excuse the typos and grammatical errors. :)

Monday, January 21, 2013


My MRI has finally been approved.  All I have to do now is wait to get it scheduled.

This has been an adventure so far.  I expect it will continue to be that way.

Oh the joy that is my life.

Guitars and All That Jazz

Jazz.  Guitars.  Not really two things that go together I suppose. Right?  I mean...maybe they do but I don't think so.  When I think jazz, I think saxophone.  When I think guitars I think folk music, camp fire camp, and  D'Addario guitar strings

There is something soothing about both types of music, mind you.  I like jazz at certain times and in certain places but overall, I love guitar music.  Though I must say, my favorite in the instrumental field is piano.  I've been listening to George Winston a lot lately.  It started early in December when I was baking.  I turned on Pandora and plugged in George Winston's December and for hour upon hour I baked and listened to the soothing sounds of the piano.

I used to play the guitar.  Not awesomely, mind you, but passable for camp.  I wish I had stuck with it.  Just like I wish I had stuck with the flute and the piano.  My inability to make heads or tails of music did me in.  The guitar, for me, with camp songs, was easier because I just had to write the name of the note above whatever word I needed to do a chord change on and presto!  I could play.  Of course, that worked with the flute and the piano, too.  Until the day came when my instructors said I could no longer use that method.

I wonder where I would be if I had been allowed to continue writing in the notes.

Carnegie Hall?  Highly doubtful but still - it would be nice to be able to play an instrument well.

Tuesday, January 15, 2013


For Christmas, I asked my brother and sister in law if they (well..Cara...since she is the force behind the camera) would take pictures of the five of us while we were up. It was THE best gift ever!

Check out just a few of the 144 shots Cara took (I'm sure there were more but 144(!) was what she sent. :). Amazing. Absolutely amazing!

Friday, January 11, 2013

16 years ago

Today is the 16th anniversary of breaking my back.

Today is the first day in over a week that I haven't cried in pain as I tried to get out of bed.

Today is the first day in a week I have managed to get through seven hours of being awake and upright without needing pain medication.

Today I do not expect to make it all day without needed medication. I still have pain though not as soul suckingly terrible. If I was forced to live with this level of pain for the rest of time, I probably could adjust. Earlier this week? Highly unlikely. The pain was too intense for too many days. Maybe that's the plan of the me what it could be like so when the pain backs down a bit, but not to the previous level, I am grateful and adjust accordingly.

Today I will pick my children up at school as a surprise since they have been asking all week and I have had to turn them down because I couldn't drive on the pain medication.

Today the sun is out and I am feeling like I just might survive this flare up of massive pain. And that is a very, very good thing.

Thursday, January 10, 2013

The One Where She Is Kinda Cranky

How did it get to be Thursday already? What have I accomplished this week? A big fat "not much". Monday and Tuesday I was on the couch all day. My pain level is unreal right now.

Yesterday I worked in Kaylen's classroom for an hour (it was my regular day to volunteer and I had missed two times prior. I felt I just couldn't cancel again. I have a very good sense of responsibility and that would have pushed my personal values) then checked the kids out of school and took them into town for Kaylen's eye appointment. She got new glasses in October but by December she was complaining and having trouble, so back in we went. She has new lenses on order. Again. Anyway, the kids and I stopped by the grocery store for a few needed items and then back home. By then, I was practically in tears from the pain so I took a pain pill and waited for it to kick in.

Stephanie and I worked on a fast, but good, dinner for everyone and then I returned to the couch to whimper.

I've been going to bed early this week...the pain is sucking all my energy. I sleep like crap and nothing provides comfort.

Tuesday the school, that has decided I'm a rockin' good sub and calls me directly for jobs, called. They booked me into two jobs next week and then yesterday called again to book me for the rest of the week. I accepted the jobs because when you are a sub and school calls you directly, you do not want to say no. Pain or not, I will be working every day next week. In a big, big way, I'm not really looking forward to it but it is nice to be wanted...and respected. I am hoping like heck that my pain settles down between now and then but if it doesn't, I have no choice but to suck it up and do what needs to be done. A least they aren't 8 hour days. I guess that's something.

Haven't heard from the insurance company yet but hopefully next week I will know when the MRI will be scheduled. From there, chances are good I will be referred to a neurosurgeon for following and treatment plans. Not necessarily surgery, it would be a last resort and I don't feel in my gut that I am to that level. Yet. Time will tell. It always does.

And guess what tomorrow is???? You will never, ever guess because tomorrow's date is only significant to me. The day my life was forever altered. Tomorrow is the 16th anniversary of breaking my back.

There is nothing bittersweet about January 11th. It's just bitter. I wonder who I would be and what my life would be like if it had never happened. Everything would be different, that's for sure.

And yeah...I'm cranky. Pain does that to me. But honest to God, I've had enough pain to last me for the rest of my life and this? This constant pain for weeks on end now? It's just not right. Or fair.

Saturday, January 05, 2013

Saturday Night...and I know how to have fun. :)

This weekend we only have Andrew with us. With all the jostling of schedules to accommodate Christmas parties, travels to see my family, travels on Dakota's end, and New Years it seems we have gotten into a glitch with the kids being on the same weekends here and away. As it turns out, the way Dakota and I switch weekends (when needed) isn't the same way Stephanie and her ex switch weekends and the ex on that side refuses to be flexible in any way, shape or form. Which means Dakota and I will need to work out a way to flip the schedule back on our end. And apparently to make sure it returns to it's "norm" every time it is flipped. Dakota goes out of town for work and pleasure a great deal which means we are flipping a lot in the course of a year. This will be interesting to see how we can make sure we keep the kids in sync with each others schedules. Oh the joys of blended families and visitation schedules. I'm sure Dakota and I can figure it out...we are very good at this co-parenting thing and we are both flexible enough with our schedules to make it work.

I have to toot our own horn in that respect. We do work very well together when it comes to the children.

But back to today.....Andrew really wanted to go see The Hobbit. I have zero desire to see it so I decided that while Stephanie and Andrew went to the (very long) movie, I would use the time to run some errands (Costco, Home Depot and WalMart) and then come back home to veg out alone. Over the years, I have learned to really enjoy being alone but it has become a rarity now that five of us are living under the same roof. So...when I do get time home alone, I really enjoy it. I love the silence of it. I don't need the TV on, or music on. I can just sit here in the quiet and think, or read or write. It's nice.

Yesterday I went to the doctor so today I have spent a good deal of time thinking. It appears that my Syringomyelia may be advancing since my pain and over all discomfort has increased. I was hoping..and still am..that the cold has just made things flare, but the doc is more concerned than I would have liked her to be. I haven't really been seen for this condition in five years - here and there, yes but nothing consistent. Things went crazy for about a year before I was diagnosed and I spent way too much time in and out of medical appointments. Once I was diagnosed, and learned the warning signs and what could and couldn't be done for it, I stopped going to doctors. No point really. I didn't want the pharmacy of drugs they could give me for the symptoms, there is no cure, and things weren't advanced enough to warrant surgical intervention (thank God). I was supposed to get an MRI yearly to watch the progression, but given the cost and lack if increased symptoms, I let it slide.

I'd say "My bad."  But for me, I think letting it slide was the right choice.  Besides, over the past few years I've had more than my fair share of stress in other areas. another MRI has been ordered and I have a bottle of pain pills to help enough that maybe, just maybe, I can get some sleep. For the past few weeks I have gotten very little rest since the pain has been keeping me awake and interfering in the few hours I have managed to get. I'm sure the pain level has been increased by my working in the schools. I mostly stand, lots of times outside in the cold, or sit in child sized hard chairs. All those things are hard on my back but a girl has to do what a girl has to do. When I work at my office job, sitting in my chair, bending ,  filing and moving things around have the same effect. It's a "damned if I do, damned if I don't" kind of of thing so I just push through and do what I need to do.

Of course, all that earned me a lecture from my doctor. Do I really want to put my health at risk? Is ending up in a wheelchair my goal? So apparently, that means an MRI to find out where things stand.

I'd really rather not know. I kind of already know that my syrinx has grown. I can feel it. I wouldn't be surprised if it is impacting my cervical spine now. My neck kills me way too much those days. My doc is only ordering an MRI of my lumbar and thoracic spine though. For now. It's the areas we know are trouble and will, therefore, be easier to get insurance to approve. Then wcan go from there.

After Stephanie and I left the appointment, I said "Must be January. I think I am learning to hate January." Everything really bad medically has happened in January. My bike accident in 1974, breaking my back in 1997, the Syringomyelia diagnosis in 2007, my bad pap in 2010, learning I had a hiatal hernia that required surgery last year..... *sigh*

But what's a girl to do? Onward and forward is the only direction to go.

But I do wonder, at times, what my life would be like if I had never taken that six foot fall and had never broken my back. And what if the Syringomyelia had never developed (which they say is probably from breaking my back and which I say is from the disastrous spinal they tried to give me when Kaylen was born. My symptoms started within weeks of having Kaylen and continued, increasing along the way, for two years before I received the diagnosis. I had an epidural with Kelton and had no problems whatsoever. I endured 26 pokes in my spinal cord trying to get the spinal block for Kaylen's csection birth and the finally, the anesthesiologist moved from trying to do a spinal block to placing an epidural and that worked on the third time. My back was one big black and blue mark for weeks. Syringomyelia can be caused by trauma. Right there was some real trauma. Just saying.)

Life would certainly be different.

Thursday, January 03, 2013

Christmas Revisited

Thought I would share a few photos from Christmas morning. Needless to say, a good time was had by all. :)

Wednesday, January 02, 2013

Happy New Year!'s a new year. A new start. A clean slate.

I kind of feel like I am standing at the top of a roller coaster ...hands straight up in the air, ready to start the descent. Some moments I even have butterflies. What will the year ahead bring? Once upon a time, I could look down the road and have a good idea of what would happen but not now. Not this time. This time it's all unknown, unplanned. Scary and exciting at the same time.

I don't really have resolutions for the new year. I want to blog more. Take more pictures of the kids. Be more connected. I've let blogging slip over the recent years but I have loved reading back and having my memory jogged. I want more of that. Documentation of my life, the life of my children.

2013. It's going to be an adventure. Good or adventure is in the making.

Better buckle up.