Wednesday, July 21, 2010

Can't Sleep

I took a sleep aid almost 5 hours ago.  Yet... here I am.  I've been in a lot of pain lately and don't like talking about it to anyone in my life.  There just isn't any point.  I don't mean to be so negative, but this is my outlet for it, and I really just need to vent. 

Sometimes when the pain is really bad and nothing seems to help (i.e. yoga, a walk, painkillers) I resort to a sleep aid.  Actually, it's more often than not that I use them.  I'm just so tired of being in pain; I'm sure anyone with a chronic pain disease can relate. 

But the biggest frustration at this point has to be the not knowing.  Not knowing what is causing my pain is really getting to me.  It's been getting to me though, ever since this started 3 years ago.  It makes me question my sanity at times.  It makes NO SENSE whatsoever that I am in this much pain with no explanation.  Sure, the orthopaedic surgeon found some stuff with my hips, but that doesn't explain the rest of my joints.  None of the doctors at Barnes have seen anything like this- and I've seen a total of 4 internal medicine docs, 3 rheumatologists, 4 psychiatrists, 2 eye doctors, and one neurologist.

Barnes was just ranked #8 out of like 600 hospitals in the country.  That's Top Ten.  So when you are told that there is no evidence to suggest that your pain is real, it can really get a girl down.  Yes, this hip stuff may lead somewhere, but who knows?  My faith in doctors has severely diminished.  Example: one eye doc told me I definitely had Sjogren's- an autoimmune disease.  Another eye doctor that I saw within 2 months of the other one didn't even mention the possibility of it- and said my eyes were perfectly healthy!  Plus I was recently told that I definitely don't have ANY sort of autoimmune disease.  So...wtf?

Okay, I'm going to attempt sleep again because I have a lot I need to get done tomorrow.   Ugh.  Just want the pain to go AWAY.

Monday, July 12, 2010

Acceptance

I think I ended my last post thinking about acceptance. I've always thought I was cool with change- that I could "roll with the punches" in life. The last 12 years of my life have been anything but traditional and I always thought I handled things as well as I could. But for the past three years, I've been waiting...

Waiting for my situation to change or improve. I've definitely felt "in limbo" before, but this is ridiculous. I mean, come on! I've been in extreme pain for most of the last few years of my life and I feel like no one is helping me! My greatest grief and suffering comes from knowing that my son is growing up 250 miles away from me and that I'm not there.

Sure, I see him during all of his school breaks and more than half of summer, but any mother knows, that's not how it's supposed to be. This is something I've been struggling with since the first time I admitted to my son's father and stepmom that I wasn't capable of taking care of him anymore. I couldn't work. The doctors were trying me on so many different medications- some made me cry unstoppably for days on end- some made it unsafe for me to drive- some made me so tired that all I could do was sleep. And none of it took my pain away.

When I gave up custody of my son, my heart seemed to go with him. When I decided it would be best for him to live with his dad and for me to move back to my hometown so my family could care for me, my soul was split in two. I don't think I could ever put into words that amount of guilt, shame, and sadness I feel over that decision. But I still feel that it is in my son's best interest to be with his dad at this point. Three years later I am still barely able to care for myself.

A woman could get pretty depressed and bogged down with feelings of shame about not being with their child, and boy have I. Not one day goes by that I don't think about my son and all of the things I am missing. Not one night goes by that I don't think about any possible solutions to this big, tangled problem- for the docs to figure out what is wrong with me so that I can move back to Indiananpolis and be a mother to my son. So many tears I have cried missing the life that I had.

Just lately I have started thinking about a paradigm shift. I have kept my cell phone number (which is my only phone) with an Indianapolis area code because, as I tell everybody, this was supposed to be a "temporary" move.

Supposed to. What does that mean anyway? I'm still here. So maybe I'm "supposed" to be here. I am of the tribe, "everything happens for a reason". So maybe this pain happened for a reason. I've thought about that one plenty, before. What possible reason would have me feeling extreme pain, laying in my bed (mostly) for three freakin' years? How could that possibly help the universe? I want to contribute love and compassion and kindness and art and lots of other stuff to this world. How could I do that from a bed? What use is the pain but to drive me crazy (literally- I went to the ER once because I wanted to end things, I was so miserable)?

But lately, I have been trying to get comfortable with the fact that since I am here, I am supposed to be here- if that makes any sense. I know I'm somewhat rambling at this point and I don't really care because I know that no one will read this. This is for me- to get my thougts out. Last time I posted, it released a firestorm of creativity for me. It removed a block. So I think I'll just stick with rambling here.

I decided to unpack some boxes and make it more "home-y". I found some things that have been hidden away for a while, like some art work, that I decided to put up. Maybe to remind me that I AM an artist and I can still accomplish. All I need is a little motivation. I also found a box of my son's old books and schoolwork. He was here when I found them and we had a great time looking through his old first grade journal. It had some real gems- we laughed at the spelling, and we reminisced about the times he wrote about (making snowmen in winter and throwing snowballs at each other)!

There is so much inside of me that needs to talk about how I feel about living here versus living in Indy. I think this is as good a place as any. Another thing I need to work on is always thinking about/referring to my "old life" in Indy, as if my life now is seperate somehow. I'm beginning to see that it is not. It is the same life. I need to accept more things, and I am working on that.

Tuesday, July 6, 2010

Time Flies...

Well, sometimes it does. Really, I just got back into the world of blogging with another blog I created for a business that my sister and I started. It's been more than a year and a half since my last post at this one and there are several reasons behind that. One being that my ex-boyfriend kept ruining my computers. I'll leave it at that. Since he became an ex, I have gotten disability due to my chronic pain issue and with part of my lump sum, I bought myself a laptop. THIS, he can't ruin. Plus he's out of my life for good now.

So, a year and a half later, have the docs figured out what the hell is wrong with me? Nope. I read through my old posts and saw that I was just starting acupuncture and was really hopeful. While I believe it helped on some levels, it sadly did not releive the pain (at least not significantly). But it sure wasn't for lack of tryin! My acupuncturist has a special place in heaven- he saw me for a good 9 months, twice a week, for little to no charge. He also hooked me up with his wife who is a Yoga teacher. These two couldn't be kinder; they gave freely of their services to genuinely try to help me. I gave them a painting I had finished last winter, but that pales in comparison to the goodwill I felt from the two of them.

It was through these services that they helped me see that my right hip was out of alignment (she teaches Anusara Yoga, which focuses on alignment) and I realized that was the joint that had been in the most pain since day one of this whole ordeal. I finally convinced my Rheumatologist to take an x-ray before he finished his residency (he has been, by far, the nicest doc I've seen over the past 3 years). Whaddya' know? There's some serious crap goin on with not only my right hip, but my left one as well!

First of all, apparently I have abnormally deep hip sockets (called "coxa profunda"). I also have significant arthritis and bone spurs that have formed. No wonder it hurts whenever I walk, sit, or basically do anything that isn't lying flat on my back. Hmmmmm... haven't I been complaining of that for 3 years? Sorry, I may be a bit bitter here. It's just that I feel like I've lost so much of my life to my bed- and in the years that I'm supposed to be thriving.

That is part of the reason I am taking up this particular blog again; while perusing others' blogs, I am inspired to contribute craftwise, but it has been so frustrating when I don't have the energy or am in just too much pain to type. I need another outlet and I remembered this blog.

Part of what draws me to this one is that no one follows it and maybe no one even knows it is here. At this point I am hiding it from my other blog (we have 8 followers over there) because I'm not sure I want people to know too much about my physical condition. Even the best-meaning people judge. I really just need to be able to write about the inner workings of me without wondering what people will think.

Why not just journal, then? Good question. I am well aware that blogs are public, maybe I'm okay with strangers seeing this. Maybe it's because I'm not trying to sell anything here (which reminds me- I need to take off the well-intentioned Google Ads I put on when I started this). Maybe it's because for some reason, typing comes easier to me than writing these days- I have such a love/hate relationship with my journal right now (I feel SOOOO blocked!) Maybe I hope that I will eventually find someone (or someone will find me) that understands part of what I am going through.

Okay, this is getting to be too long for even my own liking. If anyone is out there reading this, Hello. And welcome to my journey. I DO intend on growing from this experience, I just don't know how yet. One word I am working on lately is ACCEPTANCE.