My fingers are crossed- we may have finally found the right path.
After having almost no luck with the "neurologist" I had been seeing, I decided he's no longer going to be treating me. I don't consider acceptable treatment giving me medication, upping the dose, and not really giving me any clear diagnosis as to what he thinks may be wrong. Putting a "Band-Aid" over the "wound" in the form of over-medicating me is not finding the reason the problem is happening- it's an excuse to keep me medicated and masking the pain. Not fixing it. The theory for the time being had been adult shingles without the rash. While it's certainly possible that I may have had it- for one, I've already had a BAD case of chicken pox (thank you MIKE, love you darling brother) when I was in 5th grade or something like that. So I was little, but not like... 5 years old. Secondly, shingles almost always presents itself with a rash somewhere on the body. In rare cases, it will not. However- the interesting fact I found out while researching and confirmed by my awesome Dr. C Thursday was that shingles is not what I have. Anyways, this "neurologist" was about as friendly as a week old rotted cold fish- and his front office staff wasn't much better.
I was supposed to have an MRI on my head, to see if anything neurological was wrong, but we couldn't get the images because my (NEW) braces ghosted out the image and made it impossible for the machine to take a picture. Once told, Dr. M said "Well take them off, have the MRI and then get them placed back on. I need to see that picture." My retort was "Well, are you going to pay to have them removed and replaced? It's a few thousand dollars that I don't have right now."
His response was, "Well, how much pain are you in? Let's increase the dose. I have a medicine that will take care of the spasm, but we'll get the pain under control first." Weeks later, he's got me on orders to up the dosage of Neurontin from 600mg a day, to 900mg, to 1200mg, and finally to 1500mg. You want to talk about useless?? The reason I've not been so present online, or taking my pictures for my project, is because I felt like I was underwater- every day basically staring at this screen- but not typing, not checking sites, drifting in and out of sleep. At that highest dose, it felt like I was scuba diving with an empty tank. I was sluggish, completely unmotivated, only lucid in the mornings before my meds- and in a lot of pain still. Dr. M was still convinced that it was shingles, but offered to bring his "nerve machine" up to test me. I will not be going back to him. Oh- did I mention that the highest considered safe dose of Neurontin an adult is supposed to take is 1200mg? Yeah... I was on 1500mg, and he wanted to increase it again... Which would have meant 1800mg a day. I don't think so.
What's this mean? That the problem I'm having with falling down suddenly, without warning, and the fact that I have the spasm right above my right hip, which can't be touched with anything but light fingertips... Leads that shingles theory to a big fat death. The nerve cluster at your pelvis/hips is a network of many, many nerves. There's no way shingles would attack multiple nerves. Statistically it's impossible... One nerve, yes. Two- very rare cases. More? It's not shingles.
Where does that leave me?
Each time I've seen my doctor, my back has been out of alignment. Once fixed, it typically will last a few days and then I'm right back to feeling my lower back move around, a pop, and severe pain. My bones slip right back out of place. It happened right after Dr. C was able to adjust me on Thursday- and last night, I felt it slip out when I was slightly leaning over to pick up my cup of water. A Domo cup from 7eleven. Not heavy or anything- POP!
Typically, people develop this after back surgeries- of which I've had none. What we've determined is that after my car accident in March 2007, and then falling down the stairs right after Christmas that same year... I've stretched and torn the hell out of my ligaments in my lower back. I had been seeing an awesome chiropracter which helped me immensely, but for whatever unknown reason back in March the spasm settled in and I've been hypersensitive ever since. It will not release, even with the medications and small adjustments. Well, I should say the old medications. I've now been put on a new one that will, fingers crossed, help keep the majority of the pain at a bearable level. On a scale from 1-10, when I came home in March I was well over 10. With the treatments I've had so far, I've been a consistent 4-7, depending on the day. This new medication I'm holding pretty good at a 3-4, sometimes a 5. I think it also has to do with the other few ones I've been kept on as well, and combined it seems to be helping.
I am, however, still pretty unmotivated to really do much of anything. The new medicine is also an anti-depressant, though it isn't used to treat depression. I've been down- but hell... Wouldn't you be too if you were in constant pain, 24/7 since March with limited relief? I'm not really depressed as much as I am frustrated. I don't feel depressed. I feel pain. Lots of it. And looking forward to getting this under control. It also builds up the casings of the nerves in the body in order to bring the nerve pain down- which is what we're going for. And so far, so good. It seems to be working. We're also hoping that with this medication, it will help my Dr to adjust me and have my back stay in place. The only side effect I've noticed is that I'm pretty tired, but I don't sleep, and at night I have a very difficult time getting to sleep unless I stay up so late that I pretty much just konk out. I don't like 2 or 3am bedtimes though.
The pain won't be around forever... And I'm optimistic to say goodbye to it!
I want to start yoga, or pilates. I have to wait- because too much movement right now will make me relapse right back to before. So it's more of the sitting around, not doing much of anything. That's what's, aggravatingly, going to heal me.
Now, if this doesn't go as expected or results are too slow, there's another option. I'm not really, totally looking forward to having to do this... However, if it's needed I'll do it. It's called Prolotherapy. In a nutshell, since my ligaments are so loose my lower vertebrae are moving around wherever they want in there- which they're not supposed to do- I may have to go this route. I'd have an injection that would purposely inflame the ligaments so my Dr can do an adjustment and have my bones stay in the position they're supposed to be in. Drawback??? The fact that this shot will leave me with a burning, stinging pain for about a week. And typical treatment for an area is 4-6 sessions. Oh joy. However- considering that I've put up with 5 months of this shit already... I think I can handle it. Heh, I know I can. This is only an option if this new medication doesn't work, or my body after some time doesn't firm up and keep my vertebrae in place.
I hope this explains a little bit as to why I've been absent.
I just haven't had the heart, the motivation, the drive to really do much of anything. Pain can be so debilitating. I know people mean well when they tell me I can do it, that I'll get past this, I just need to dig in harder and not let it get to me. You know what... It's hard to do that. It's so hard to get out of bed in the morning, because it hurts. It's so hard to try and focus on what I want to do in the near future- I can barely think forward to what I want for lunch most days. Well, scratch that... Dinner. I don't really eat that much anymore because of these medications. I've dropped 40lbs since coming home, and I'm losing more. I forget to eat breakfast, and lunch. Sometimes I'll snack in the afternoon, and dinner is small. I've lost weight, just not the "good" way. But it's staying off. It's hard to see people out walking around- I can hobble to a bench if I need to. I can't go shopping. I have a hard time moving around. I can't pick anything heavy up. I risk throwing my back out if I bend too low to pick something up. Twisting the wrong way will do it too. I miss fishing, camping, hanging out with my friends doing stupid things. Going to an amusement park, riding the rollercoasters. Walking around downtown and barhopping. Normal things that don't require a lot of effort. But to me... They take up nearly all my energy.
The thing I hate the most is people telling me to just block it out, get over it, suck it up and just deal with it. To them... I have a few profanities I'll scream in their face. Until you deal with pain like this, constantly, every day little to no relief and no answers coming from the so-called "professionals" (with the exception of my awesome Dr. C) and being over-medicated because they want you doped up- I don't think you'd survive an hour. At this point, I think birthing a child without medication would be a walk in the park for me. And yes, that was a joke. Otherwise, most folks have been incredibly supportive and offered me surprisingly more hope and encouragement than I ever expected.
So to all my friends- thank you so much for offering your kindness.
You have no idea how appreciated it is.
And yes... This does mean I'll be resuming my photography project.
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