Spring is Renewal

I love feeling the sun on my face. There's a certain buzz around spring that is the excitement of fresh new beginnings. The hope of summer picnics and blooming flowers and gardens.

Then there's also the fear of sweltering heat. Thunderstorms and tornados. The buzz of mosquitos and bees and trying to keep up with lawn care.

See? Two sides to every coin. Optimistic or pessimistic?  I don't know. Realistic?  Probably. But the Libra in me preaches balance. Finding balance. Living balanced. Emotional balance. Now if I could just get the pain side of my brain to work as a team with the rest of my body, I would be pleased.
I suppose there's no time that you would say ok...its 3 pm I will take my pain now. But boy it sure would be nice to roll it up and stick it in a box and have a pain free week.

I know within my heart that God gave me this for a reason. I know there's more to it, like genes and all that but there just has to be a reason. I know my God is a loving God, I do not believe that I am being punished. But as my Pappy said more than once. God has a plan for me, and as long as He still has something for me to do, I will be here. So here I am. Hoping that I can reach someone, anyone who battles like me everyday. That someone that sometimes is awake all night because of pain and cursing the heavens for relief. That someone who feels lost, misunderstood, and alone.

I'm here to tell you that you are not alone. There are many quietly grieving their life before pain alone. And that's exactly why I started this blog.
Every day I hear but you are too young for that! Or many others that we will discuss at a later post ( watch soon for 10 things NOT to say).  I agree in some aspects. You are right I should be too young to be handed a life sentence of grueling pain, feeling like your joints are going to explode,  feeling so exhausted as soon as you wake up in the morning,  like you need a nap after you take a shower...yes I think I'm too young as well. But fact...there's also JRA which also effects children. So yes I want to be too young. I want the children that are suffering to be too young and I want it all to be cured. Hhhmmmpppf. I guess thats too much to ask and maybe some day there will be. I'm very lucky with my meds. They are slowing the process of my crooked hands and toes. They still hurt though. And I know I'm not the only one.

I've been trying to find my balance for years now. I don't have any magic pills or herbal rubs or fad diets but I do have experience.  Real life experience with pain. I'm now rating my pain daily, and keeping track. I'd like to see if there's a pattern to the cycle of a flare. I'd like to name him. This pain. Fred. So when someone asks how's Fred today? Oh...he's pretty mean today. Or..Fred..must've taken a vacation, haven't seen him today. It would be so much easier than just saying I'm hanging in there ( my standard go to answer). It seems that it would be rude to say...oh well...my hands feel like they're about to explode and my ankles feel like softballs and my knees are grinding with every step and I have a rash and a bruise from the lava filled shot I injected in my stomach  last night. Or the always happy..I'm fine, how are you? With no acknowledgement to the screaming inside your mind.
Guess there's a balance in there somewhere.  
And so with Spring and so many things I want to do, I even have to remind myself that I can't.  I dream of dancing. Dancing has been a love of mine always...swing..hip hop...line..any music any time. I do still dance occasionally but not all night or even around the house like I used to. Sometimes I'm limited to chair dancing or car dancing. And thats okay,  it's my new normal.  But, I obviously miss it if I'm dreaming of it. Adjustments-life is full of them. My gardening abilities also adjusted...I sit on a 5 gallon bucket to work on raised beds. Its still harder than it ever was, but I'm still just as proud and happy to participate in the ways I can now. See, it's still finding balance.

Enjoy the renewal of spring, with a promise of hope, and balance old habits with your new normal. Find renewal in yourself.

Uncle sing a song and dance a jig

Unsure if you would actually call it luck but my family is for the most part very understanding about my limitations. Sometimes a gentle reminder is needed but it doesn't take much and for that, I am grateful!

Because of my Uncle Larry setting an example of strength and courage before me, I had inspiration. He had crooked hands and crooked toes and a wild ornery spirit! But he didnt want pity and mostly didnt want any help. He lived through RA like no one could have imagined. He worked....played with grandkids and was known to wiggle his fraile crooked body on dance floor now and then. But dont pity him. He was Cowboy Tough.  He was a hard worker....it may take him extra time but he would get it accomplished and with a smile. He always had a smile or a song to sing . I miss him very much. And I feel an honor and strange need to follow in his footsteps. 
It frustrating.  I have all these medications now that he didn't have. I was able to be diagnosed before any major damage was done. So with that and more progress in technology one would think all is okie dokie.  And medically speaking...if my blood counts are decent and my liver isn't falling out and my crp is level then huh? I must be ok. Really?

Cause that doc doesn't understand that Im 40ish and not 129ish. And I have a family and dinner needs cooked and a job..yes a real life job. That with requires me to unhook my hands every morning, so I can hobble to the shower and stumble through my morning. I was already exhausted when I woke up. So I am finding new ways to cope and new tools to use and maybe I can help someone else find their inner cowboy too.
And, I adjust. I follow the lead Uncle left for me in his legacy. I want to be cowboy tough. And I want to sing and smile through the pain because if I dont I may curl up into a ball and not come out. I still have life to experience and foods to taste and places to travel. One day at a time. One hour at a time. One minute at a time if thats what it takes. I will fight, I will cry and some days I will rest. Not because I'm lazy or depressed. But because I really have plans to get up tomorrow and sing and get to work and tell myself I can get through one more minute. I can do it because I know it can be done. Uncle Larry did it and I will be proud to follow his crooked cowboy tough path. 
Thanks Unc for showing me the way!
-Ryss