Let's talk about it!

I am a Mother of 6 who proudly did it all.  I stayed physically fit, exercising, walking riding bikes etc.  I did everything from decorating my house around the clock, gardening, learning how to put in a brick patio, hang crown molding, painting landscapes - I did finance and accounting for 14 years of my life, but my biggest accomplishment was being a mom.  My children kept me very busy I ran around volunteering in classroom, running them to any and all activities and some of them have proven to be very athletic while others are very artistic.  Wonderful family my children became my life.  My one son was afflicted with seizures at a very young age of 3 - we began letting him go to school attending kindergarten and it was terrible he missed half the year due to seizures and then the next year was worse.  I decided to study the laws and found a way to teach him his curriculum at home and get him in for resources and other things in the afternoon this helped him soar - granted he is still very behind but is more confident.  My family has grown to be the ideal family - why sure the kids fight like any other set of siblings but when it is necessary they stand strong by each others side and help them through their rough patches.  I am proud of them, of the people they have become.  Let me tell you I know I am a good mom, not a push over, I stand strong and expect a lot from my children and they know it - Our love in this family runs deep and for that I am most proud. 
So with all this to do 7 years ago this fall I fell ill - very scary ill - I couldn't eat or drink anything, in the first two weeks I lost 27 lbs.  My closest friends took turns bringing me all sorts of things that have been pureed into soups or smoothies, driven me to the doctors etc .. it took 6 months and many many test to find out I had gastroparesis.  This is when the fight began.  I tried every medicine available to me here in the US and some from Canada, nothing helped me get through the pain of eating.  Finally I learned to eat at the end of the day and let the pain settle into me while I tried to sleep - I needed to take pain killers and other meds that would help with the mobility of my stomach. 
This all seemed to have been working - it certainly didn't hold me back or stop me from continuing on my crazy schedule. The one thing that I could no longer do was exercise to loose weight now I was doing the opposite trying to hold on to weight.
Well that was fall of 2004.  Summer, more specifically June 2009, the month of my daughters wedding I fell ill with pneumonia, no big deal.  I spent 2 days in the hospital the doctor let me out two hours before her wedding-it all worked out.  Well in the next month I pushed my body to it's limits helping my husband with his new business.  Oh I did forget to mention the same time I was preparing my daughters wedding, I was also up many many nights painting walls, artwork, redoing floors and staining shelving for the grand opening of my husbands store.  Well the work continued on for the store and one day while preparing for a tv interview I fell, completely unable to hold myself up in my bathroom.  I phone my dear friend Karen and asked: should I have a fever of 103 if I am on a strong antibiotic- that was all I needed to say she rushed me to the hospital.  I don't remember the first five days in the hospital - I have seen photographs of my six children sitting around my bedside - attempting to make funny faces on me with a permanent marker and laughing about all sorts of things. (these are my little gems..lol)
They biopsied my lunges looking for everything they told me they took over 2 dozen biopsies.  My lunges were shriveled up dried prunes, one wonders how that could be I listened and relaxed a few days on the couch and took my antibiotics.  Well my body failed - my immune system shut down, my husband told me I looked like a tree someone forgot to water and once they realized it the tree had turned all grey and weak.  The doctor had made a horrible comment, saying "if the steroids don't save her there will be a funeral"  No kidding.  Anyhow the steroids I guess saved me and a short while after getting home after a 16 day stay at the hospital half of it in ICU - I seemed to be feeling better - as time went on the steroids were doing weird things to me - that are common while on steroids - my joints swelled up - heck my face swelled up you couldn't even recognize me.  Steroids and pain killers and all sorts of other meds were entering my body and I no longer was the STRONG MOM who could do anything - I couldn't drive, I couldn't stay awake, I could hardly move, I wasn't interesting in any more pain and didn't eat.  I hated who I was and it didn't get better - I had to use a wheelchair on some days when the body just fought back and I had to give into it's weakness. I was humiliated, shut down - the whole town had things to say - like you look good, glad to see you up and around,wow you must be feeling great  or the complete lets just ignore her and we won't have to listen to it.  I am a straight shooter - If someone asks how are you feeling and I feel like Yuck I say not so good, If I am feeling great you will here Great~ However with this disease I can tell you with certainty I haven't had a good day in years.  I forgot to tell you - after many doctors visits and over two years later these are the diseases I have:  Gastroparesis - have pacemaker put in Dec 2010
                          Lupus, although they would rather call it unidentified auto immune - but I take lupus meds
                          Fibromyalgia - a PA in rheumotology claims I don't have a severe case I agree more joint than muscle pain for me.
                          Raynauds an auto immune which keeps me cold my hands feet will literally turn purple
                          Nutcracker esophogus - this is a strange one - I had my heart checked arteries and all because I had heart attack like symptoms for years - the GI doctor who is a genius up in Portland who placed my pacemaker did a swallow test that shows my esophogus squeezes very hard and causes extreme chest pain and shortness of breath just from talking too much .. crazy

Here is the deal -  I no longer can enjoy a few hours of shopping extreme pain on my knees ankles back etc etc .. I can no longer sit in the bleachers at a game without suffering from pain in my joints things lock up get so tight it's hard to get out of there - I just take a deep breath smile and "grin and bear it" as to fake out the town.  I can no longer drive long distances - my fingers hurt - chop vegetables roll cookies nope - typing this blog is causing issues I just stop and rub   I have a need to reach out to someone - people who get what living in pain is all about - I think when I post I feel terrible on facebook or to someones face - I hear in my head there goes the whiner again - and it deepens and becomes more apparent when there isn't a response back not even from your friends. 

This weekend I asked if I could fall back on my husband - I told him I needed a soft spot to fall when I felt beaten he just grunted and fell to sleep .  I am alone in a painful world - wanting to be better than I am - I want to be the greatest Mom to my children the Best friend to my Friends and the only way I know how is to express myself and hopefully reach others who feel the same way . Maybe together we can feel Whole and Significant again ... Send me a Post - Here's to chatting with a world of people who get it ... or even to ones who are trying to get the other sides perspective .. Lets shine our light again.
Come on Let's talk about it~