August has been one of those months where things have in some way really changed for the better in terms of pain management and options. In the past week I have slept more hours than I have for all of June and July combined. I found out part of the reason why my pain management has been so awful for the past bit of time (there are assholes and then there are assholes...) and now have the ability to explore new options. However I managed to have a rousingly good time this past weekend in the sun and well... need I not say more the beast has been roused.
Why has my pain management been so awful? The response of "Just take some Tylenol" from the UW resounding with every pain management phone call made? Somewhere with their imaginary medical expertise they made the order to cease ALL pain management for me. This means no NSAID treatment, no opiate class drugs, nothing. Why? Because I am young and while this may be a painful condition they feel it should be easily coped with without pain management at this point partially because they don't want my body to be destroyed by the medications. But my quality of life was being absolutely tanked. My ANA is still positive, I still have all the stupid markers, I still have the same stupid symptoms, so of course the bloody stupid pain is still going to be there. The worst part is they never told me this. It wasn't until my GP showed me the chart notes from the UW that all the troubles I have had with refills made sense. As I sat down with my GP and explained just how much pain I was in... he pretty much looked as though he could have gone and murdered every single person in the city. He was absolutely appalled by it all. One does not simply stop and refuse the management of pain because a person is "young and able to cope with it." I guess since doctors don't have to live with it every single day and only see you for a brief period of time the "out of sight, out of mind" thing must work wonders for their little psyches.
As our conversation in the office that day continued it was clear that my options are limited for pain management now. There are only so many drugs out there for treating pain, and I have been through a good lot of them. My GP is willing to try anything and everything to get me to have a better quality of life. He has stood by my side for this entire lupus journey and without him I would still probably be lying awake at night in absolute misery. At any time I now know I can call him and get a prescription for whatever powerful pain drug I need, regardless of what the UW says. I am thankful for this as it can be hard to soldier through things knowing that there will always be another painful spell and who knows how bad it will get with little hope of relief. It was a very successful appointment. Right now I am exercising one of the options with extreme caution because it can cause schizophrenia in my age group. But even with the risks that have been laid out before me, the sleep is so glorious that at this point the benefits out weigh the risks.
As per usual I went out and had way too much fun this weekend. As a result I have been essentially close to bed bound for the past two days, with spells of being able to function semi decently but with lots of brain fog. Something new and fun has joined this little "you sooooo over did it Katyann" party: nose ulcers. I have never had one before and golly do they ever hurt. Sores in the mouth, sores in the nose, fatigue, brain FOG and a rash across my chest. I am the lucky winner of a few down days due to being out in the sun and running around like a rebel. It was my choice to do so and I do not regret my choice. Sometimes the limitations just can be too much and breaking free for a bit is the only way I can remind myself that I really do need to behave. It is stupid, it sounds stupid but it feels pretty great to do while in the act.
I hope you all have a lovely rest of the week with lots of spoons and sleep :) The 2012 Mad Hatter Lupus Walk is just sixish weeks away now! I would love for everyone who reads this blog to come out and join me please :)