I grew up loving the weather! I tell myself if I could go back and do it all again I would become a meteorologist. I loved the first snow of every year. I would open up my bedroom window and just listen..........I could hear the peacefulness of every snowflake hitting the ground. It was silent but I could truly hear the beauty. I loved the first storms of the summer! You would look at the trees and the leaves would flip around and that is how I knew a storm was a brewin! The thunder, lightning and the pouring rain hitting the roof! It was the best time to curl up on the couch with a good book! The fall, it wasn't so much as a storm but a breeze that started out a little cooler than the ones in the summer. As the days moved on and got shorter and shorter the breeze would continue to get cooler and cooler. You would see gradual changes but eventually fall was everywhere in shades of yellows, reds and golds........and the smells! When I close my eyes I can still smell the leaves on the ground and that smell was intertwined with the smell of a bonfire. Oh, that was my favorite time of the year and one I still miss the most!
Here in the desert there is really no drastic change. The four seasons do not exist and spring just gets hotter every year, summer tends to last until Thanksgiving and winter, well, winter has been even dryer than normal over the past few years. Everything is blur. I remember my first Christmas in the desert, I could not find my Christmas spirit and those of you who know me know that Christmas could start in October if Tim would let me! That first year was tough. It was warm enough to swim and Christmas lights don't belong on palm trees and how did they get them on the cactus without pricking themselves over and over!?!?!?!?! Some houses out her are so big that some even hire actual crews to hang up their lights! What happened to everyone bundling up and telling mom or dad which way to go with those lights and if the bow was in the center of the wreath????? The good thing is that Tim's family hangs their own lights and I am the first one up the day after Thanksgiving hanging lights with his dad!!!!! And yes, I prick myself on the cactus!
All these changes are what so many of us look forward to during this time of the year but one thing they forgot to tell me is that these small changes in the weather would hurt. When the temperature finally does start too cool down and rain moves in the pain level for me increases. The rain means staying in bed and listening to it while managing the pain the best I can. As I have mentioned earlier in my blog, sun hurts me just as much! Where is the happy medium here and how do I mark these moments with joy and not a pain pill????
Well, if I had the answer I would not be writing about it today. BUT I do have an idea and I am following through with it this week. The one doctor I do not have on my team is a chronic pain specialist. How can I not have one of those????? They must not have been one of the choices in the salad bar of doctors the day I went through! I have researched and chosen a teaching facility. I am all about the next generation of doctors understanding people like me! I am hoping that while the Rheumatologist treats the Lupus and the Pulmologist treats my lungs and the ENT treats my sinuses and the Neurologist treats my noggin and on and on and on......the chronic pain doctor can help me manage the intense pain of everyday life. I do not expect him to be a miracle worker just someone who can make me a little more comfy.
I decided tonight as I was walking down the steps that I would measure how well the new doctor was doing by the pain I felt doing such a small task. I want to be able to walk down the steps and have no pain. Just the steps. I don't need to run a marathon at this point or even hike up my favorite mountains.......just walking down the steps is all I am asking for. I don't think that is toooooooo much!!!!!!!
Today was a tough day and the weather changed drastically and rained off and on all day. I knew this even before walking out the front door. The pain had settled in my joints and it has remained there all day. I have taken hot showers and used the heating pad and nothing is bringing the moisture out of the smallest cracks in my joints. Today I now see the chronic pain doctor is not a choice anymore but a necessity! It is time to take control of the one thing that I feel the most, pain. So, next time it rains I want to curl up on the couch with a good book and not have to swallow a handful of pills just so I can walk. I have hope that one day I can truly dance in the rain one more time.
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