Falling and Fears That Follow

My mom came out to visit me this weekend because I have been feeling so much better and it's been years since she's seen that. We spent hours shopping and having a good time. Our last stop for the weekend was Costco to pick up odds and ends. Wouldn't you know it? I slipped on a liquid substance (maybe jam?) and fell. Hard. At first I didn't know what happened. Then I wanted to get up and leave quickly because I was so embarrassed but luckily my mom had me stay down until we could make sure everything was fine. I was sore but that didn't matter; I was concerned about my stimulator. I know that the wires can dislodge after a jolt (usually a car accident or a big fall) and I wanted to make sure everything was in place. I'm sure the poor Costco manager was wishing it had happened to someone who didn't recently have brain surgery, but that's the way it goes. 

I went to the ER and got X-Rays as well as a CT Scan. Luckily everything was in place and I was discharged after a few hours. My hospital experience made me wish I was back in Sacramento with knowledgeable doctors because everyone at Renown looked at me like I had a second head when I told them about my stimulator. I have been considering finding a neurologist and neurosurgeon here in case I need anything, but so far I do not have much confidence in the doctors in Reno. Perhaps it's worth the two hour drive to visit UC Davis. 

I will need physical therapy because I pulled my back out. I hate physical therapy. I have had many experiences with it in the past and while it does help, I don't enjoy going (especially at this age, I'm too young!). This fall made me even more thankful that I do not have the stimulator battery pack in my back because there is no doubt I would have caused some damage. As anyone who has had this surgery knows, the fear of a revision surgery is real and always looming. Hopefully as time goes on I will think of it less and less. But for now, I am still treating my body with kid gloves. 

I have been trying to taper off the pain killers, but every time I try I seem to hurt myself. I am truly struggling with this and it brings me a lot of shame. I thought it would be easier than it has become. I'm really not on a high dose, and I don't believe I'm addicted because I'm taking less than prescribed. Yet I know that my body is dependent. What it really boils down it is I'm afraid of going off of them because I am petrified of being in pain. The funny thing is I also know that I'm in more pain because I'm on opiates and once I get off I'll be amazed at how good I feel. I'm just scared. I don't want to go off of them and have to go back on. I'm seriously looking into doing a detox program through a local rehab center. I know my insurance will cover it, I just want to make sure I'm not branded an "addict." 

I so wish there were more doctors out there that understood chronic pain and opiate use. Before I came across my correct headache diagnosis (hemicrania continua) and the ONS surgery I applied to go to a pain rehab clinic. It looked amazing: mornings were spent with a counselor that understood pain, afternoons were spent doing exercises and learning meditation. Basically, they taught you have to live a modified, but normal, life without medication. I soon found out they did not take headache patients. I was devastated, which sent me on a search for somewhere that did. To my dismay I could not find any. There were several headache specialty clinics, but nothing to help cope with chronic pain. I suppose that is part of the reason I was so gung-ho about the surgery. I knew that I didn't have many other options and I certainly didn't want to be on opiates the rest of my life. Perhaps one day doctors will stop throwing pills at people and teach them how to deal with pain, but maybe that's just wishful thinking.

I found this website very helpful when trying to deal with chronic pain. The books that they sell are amazing and I highly recommend them. 

http://www.theacpa.org/

And their store:

http://acpa.stores.yahoo.net/

A Month Already?

I can't believe how long it's been since I last blogged. I have done so much! Spent a week at the beach with my amazing boyfriend, a week back at my mom's house in Sacramento, completely redoing my front porch (oh the joys of buying a foreclosed home!), daily walks with my dog and getting ready for school. All of those little things are so much easier to handle now that I don't have horrible headaches.

I use my stimulator sporadically. I will turn it on when my pain reaches a 2 or 3 and generally leave it on for a full day. I notice the stimulation is stronger when I press on my forehead, so sleeping on my stomach can be a little uncomfortable. Usually around hour 25 it really starts to annoy me, so I'll switch it off for a day or two. Then the cycle starts again.

Something I have really been struggling with is getting off of pain killers. I wasn't sure if I should broach this subject, but I think it's important. My use of opiates has been fairly consistent over the past few years. I have never had an addiction problem, yet I often do not discuss my usage because many people do not understand taking them responsibly. I always hear a story about how it's only a matter of time before I become an addict.

I strongly believe that to become addicted to opiates you can't be in pain. At least not chronic, overwhelming pain like many of us are. There are some doctors who do not believe in prescribing pain killers unless a person is terminally ill. This is beyond frustrating to those suffering with chronic pain. To be honest, those pills saved my life. There were days when I was so hopeless and in such dire pain that I was suicidal. However, there are also doctors that will hand out prescriptions like candy, and these doctors cheapen the real pain that some people are in.

What I am having issues with is physical dependence. Much different from mental addiction. I don't think I realized how much my body needs this medication. I've been trying to wean off slowly, but it's easier said than done. I just can't wait to be done with them!