My Fight With MCTD Blog

This is a special blog section where I will help journalize a day in the life sort of idea about how my health and I are doing along our journey and various things related to living with rheumatic illnesses.  Hopefully it will not only help educate but also help encourage others also fighting...  

October 24 2010

Okay, grab a coffee, this is going to be one heck of a long rant......and i mean RANT...vent, yelling from my soapbox whatever you want to call it....IM MAD! Maybe its the fact that I'm still fighting off a virus that has made everything in my body go kiddiewonkers and thus putting me in a lot of pain and incredible fatigue; but right nwo I'm pretty upset.

Now dont get what I'm about to say mixed up or confused.  I am pro-cancer research as my father died of Pancreatic Cancer; my mother is a 7 year survivor of stage 4 breast cancer and my uncle died of Lung/Brain cancer.  I support them whole heartedly.  I also support the heart and stroke foundation as my grandfather died of a stroke in my stepdads arms; and there is heart disease on my mothers side of the family.  There are tons of great medical/disease related causes.  I support a number of them.  However, this is where the rant begins.

I am really frusterated when I try to post on my facebook for example, support for those of us suffering with Rheumatic Illnesses.  If its one for Cancer, or Infant Loss, a Soldier; family oriented thanks...they  are passed around with vigor; and yet; when I try to get ONE PERSON to copy/paste/share one for Rheumatic can hear the crickets lets just say.  Not one is shared EVER.  I see tons of pink and yellow ribbons passed around; I see lots of ads on television and hear them on the radio announcing the support of various charities....and yet, not one blue ribbon, not one ad for arthritis & other rheumatic illnesses.  Not one celebrity rallying for the cause.  No one to show those of us suffering in invisible silence that there is Hope.  That there are people supporting us. 

This discrimination needs to end.  There are too many falehoods floating around; people are judging books by thier covers needlessly.  A person with an invisible rheumatic disease; they work 10x harder and push themselves and thier bodies OVER thier limits in a need to feel/seem normal; to be accepted by society; friends, family, neighbors and co-workers.  Those same people who tell them it doesnt really hurt, to just get over it. 

Yet, if it was a diabetic, cancer patient, or any other number of illnesses; they would offer encouragment, aid and support.  But not to us?  After all cant kill you right?  Wrong! VERY VERY WRONG!  Rheuamtic illnesses do not just attack the bones and joints; they also attack organs, tissues, muscles and skin.  It can cause heart and lung complications and deaths; it can cause things like hemmoraging and blindness too.  Those of us with Rheumatic Illnesses have the equivilant of an opposite to HIV. In HIV the bodys immune system is too low.  Ours is too high.  Because its too high, it over reacts and gets zelous; and attacks itself - it doesnt know the difference between a virus or a knee joint. 

Im am disheartened and feeling hopeless today that things might never change.  Where are our supporters.  Where are our champions?  Where is our HOPE?! 

October 12 2010

Well, fall is finally here in Medicine Hat.  I don't think I have a favorite season here yet though.  I love the numerous amazing colors we get here all year long; and given I love photography, its always a creative wonderland for me.  The heat bothers me when it gets so hot; but at the same time, come fall, winter and spring, my raynauds constantly acts up and my fingers, toes and tip of my nose are like tiny icicles I cant seem to ever keep warm enough.  The other drawback to autumn, much like springtime, is the inconsistant one day the temperature can vary 40 degrees or more and that does a number on how I feel too.  Its also that wonderful time of year now where it seems everyone has a cold or flu.  That wouldnt be so bad, however, I always get the worst of the worst ones and they land straight for my chest and end up in a lung infection....again.  Thankfully I've already stocked up on lots of honey, lemon tea, and peppermint tea in preperation this year.  My wish however, is that I get a doctor this year.  Thats what I truely need right now.  Ive had my MCTD since I was 9 years old, and have always had; as my mother likes to say; gypsy blood somewhere in me.  She would know, she has it too.  I've never had trouble finding a doctor til I got to Alberta, now it seems I cant find one under any nook, rock or crany.  I can only get into the walk in clinic who brush me off and will give me only Naproxyn and send me away.  So sadly, here I sit, while theres a million new treatments for my health, with a bottle of naproxyn, tylonol and advil, praying one day I might actually get a doctor who can help  me get my health back on track.  So far its been a year long pipe dream.  Even the minister of health couldnt find me one.  How sad is that?  I have my good days and bad ones right now.  Ive found that when I wake up in the morning it takes about an hour or two to limber up and wake up, then I have a small burst of energy that lasts until maybe 2 pm if I'm lucky, then I desperatly need a nap.  If its a bad day I need a second in the evening after supper just to stay concious.  Today is a mediocre day.  Not fabulous but not as bad as I've had.  On energetic days I burst through my FB pages and my other social networking sites trying to raise awareness for Rheumatic Diseases.  Ive even started making awareness support products via Zazzle and Cafe Press and LuLu that can all be seen on my Graphic Design Website ...  Anyhow, thats a little bit about today...not to great, not to severe....and hands, nose and toes that are cold enough to make anyone I touch shriek in responce.  Wishing everyone a low-pain day. Gentle Hugs!