Sunday, September 29, 2013

Be careful what you wish for...

Last night as I was self medicating (translate to drinking heavily) because I am out of meds and don't have a Dr appointment until Thursday, it dawned on me that I now weigh what I did when I graduated from high school.  Through aging, having children, Remicade induced weight gain and such I have often wished I weighed what I did when I was in high school.  Some days I stand looking at myself after I bathe.  My body has the scars of a life lived and a body ravished by psoriasis.  The large dark psoriasis scars that probably I am the only one who really notices, the stretch marks (which I love because I remember which ones are from which daughter), the scales of psoriasis that come and go and come back again, and the scars from injuries both from stupidity and accidents all remind me to be careful what I wish for.  Yes I have the weight of my youth, but my body has definitely born the brunt of living and my disease.

The weight loss was not something I tried to do, it is a side effect of medication and illness.  I know that it is better for my arthritic weight bearing joints to not have that 50 lbs I've lost hammering them with every step, but I have to wonder if the weight loss "plan" I've been on is worth the weight loss.

As I sat pondering all this it also dawned on me my other biggest wish this past year.  To live with less pain and less extreme flares.  To move to AZ where I knew that was possible.  It has been possible for me and I feel very blessed and physically relieved to feel "better".  Better of course is a hard word to quantify, but I'm out of bed more than I am in bed.  This decision for my health also came with costs.  I am so happy to be near my parents, sister, and my sister's family, but I miss my best friend and daughter to the depths of my soul.  My heart is split in 2 and residing in 2 places.  After being here near my family I don't think I could leave again yet I don't feel like I'm functioning well with the other half of my heart 1000 miles away.  No amount of seeing my family or my new friends is quenching my loneliness.  I carry regret that after waiting and wishing for 14 years to have my child back and finally having her in my life and building a strong relationship with her that I am so far away.  My communication with both my daughters and morning phone calls with my best friend are what keep that wisp of a thread from snapping and hold me together emotionally, but I have to wonder when that thread will snap.  When crying in my tub won't be enough of an emotional release to keep me from totally breaking down.  I know that many will see this and dismiss it as life change induced depression, but I'm not depressed.  I also know some will say that with time things will work out and level out, but I just don't see that happening.  I've lived a gypsy life all my adult life and leaving an old place was just part of the journey.  I didn't forget my old place, but I didn't mourn it or dwell on it.  I remembered the good and looked forward to the next step of my journey.  I'm not leveling out.

Everything we wish for is sent out into the universe, and it may never come true.  Just keep in mind that it might and really be sure it is what you want because it may come with a price tag that is hard to swallow.  I don't know what the answer is to my response to the universe's answer to my wishes.  I will figure it out, but in the meantime I'll keep on keeping on just like I always have.

Tuesday, September 24, 2013

A year in my life...

September 24th, 2012 is an important day in the progression of my decline this past year.  I had my annual physical that day.  I was advised to get the TDAP vaccine, and after discussion between my GP and my Rheum it was decided it "should be ok".  Well hind sight is 20/20 so to speak because it was definitely the catalyst that sent my already flared condition into hyper-drive.  I was already only working about half time and had discussed taking some time off work to try to allow my body to equalize and try new meds, but I was holding out.  I wasn't ready to accept that I needed to slow down.  It's funny how we think we have a choice in these things sometimes.  My life came to a screeching halt on that day.

I never returned to work.  I still held out hope that one of the meds would stop the attack of my immune system, but nothing worked.  A few actually made me even worse (and I didn't believe that to be possible when I started).  I didn't apply for Social Security Disability until January because I hoped I would still be able to return to work.  That is something that will never be a reality for me the rest of my life.

This past year has taught me so much about myself and life.  Not only have I retired, but I have relocated to Arizona in hopes it would improve my health and to be close to my family.   I have learned to appreciate the small things in life.  I have learned to listen to what my body is telling me and be thankful that I can live at the pace my body sets for me (even if my head and soul are resistant to taking it slow).  I have learned that holding anger over what I have lost or had to give up is not healthy or productive.  I have learned that quality in everything I can control in my life far outweighs quantity.

These days I live a very different life than I ever imagined I would be living.  I wake up at 6 every morning still, but instead of fearing that I won't be able to get out of bed for work and lose my job, I get up when I can, I enjoy my cup of coffee on my patio.  I cherish my morning talk with my best friend.  I take time to cuddle with my cat.  On my good days I go for a walk or a swim, and craft.  On bad days I accept that it's ok to stay in bed or on the couch and allow my body to rest.  The housework will get done eventually. It's ok to eat frozen lasagna or a peanut butter and jelly sandwich some days.  It's ok to be a hermit some days.  Life continues to move forward with or without us.  We have to choose to live it the best way we can or we aren't really living at all.

I still have moments when I grieve my old life, but I don't have the rage I carried a lot of the last year about it. Life is to precious to squander it being consumed with rage and self pity.

So I guess today on the anniversary of my life taking a nose dive I want you all to know that it can be ok.  It may be different, but it isn't the end of life.  Listen to your body and find your joy.  If it's a day above ground you are one day closer to a cure or at least the hope of one being a reality.  None of us are alone in this walk and I want all of you to remember that.  In our darkest hour there is always someone out here who understands and gets it.  ALWAYS remember that.

On a final side note I want to let you all know that I read today that Stelara has been approved for Psoriatic Arthritis.  This is my next hope for relief as I have exhausted all the other options.  Hopefully it will be hope for many of us who have failed the other options.

Peace and healing to all of you!

Cuddle time with the cat (she looks thrilled).