Thursday, April 26, 2012

Day 26 of Cushing's Awareness: 15 years at a glance.

Today my husband and I have been married for 15 years!  I am really glad that I've been lucky enough to be married to a great man who has stood by me during some pretty rough times.  When we got married I was already sick, but I didn't know I was sick.  I didn't even know what Cushing's Syndrome was, but I knew that my weight and weight gain was not normal and something always seemed off about it.  I was still able to function as a normal person for the most part.  Almost all my jobs during that time had crazy hours, so I was always up until 5 in the morning, so maybe I never was aware just how off my body was.  It seemed normal for me to be up all night and then finally feel myself getting tired when the sun would come out.  

I wish I could turn back the clock and know all that I know now.  Back in 1997, the Internet was not a fraction of what it is today.  Most households didn't have a computer or the Internet yet.  I suppose even if I had known what I know now, I still wouldn't have been able to connect to all the other Cushie's online and read about all their stories.  The stories that have inspired me, given me the courage to keep on my path, the strength to continue to learn more about Cushing's and help fit all the pieces together.

It is truly amazing and crazy at the same time how much the world and myself have changed during those 15 years.  I hope that in another 15 years I am able to look back and reflect how much my life has changed for the better.  My kids will be adults, possibly in college, and I will be better and able to look back and reflect on how something so wonderful can be born from the depths of such a devastating illness.  I will defeat this. 

I had to have a CT of my sinuses done today.  They tried putting in and I.V. six times and blew several veins before they called down another nurse to use a Doppler to find a better vein.  It was not a fun ordeal, but thankfully the seventh try was a success and I was finally able to get the CT scan done.  Cushing's has obliterated my veins and today was a reminder of just how sick my body still is.  I hope that they figure out why everything smells and tastes off and figure out why I can't get rid of these infections since my surgery.  Hopefully I will know something soon.  I am just ready to get whatever is going on in there taken care of.  I feel it's hindering my recovery so much at this point.  Here is to hoping that they see what the problem is and the remedy is fairly simple.  I'm not looking forward to the possibility of surgery, simply because I am petrified of them messing in the same area that I had the artery bleed in, but I know that I need to do whatever is necessary to get better.  All I have to do is look at my kids and my husband and the solution is simple.  Fight on.  

Happy Anniversary, Hubby. :)

1 comment:

  1. Hiya... I've just found your blog and have been reading through it (mostly backwards!) as I believe I've got cushing's syndrome/disease and am trying to make a doctor take me seriously. Unfortunately I also have polycystic ovarian syndrome, which shares many of the symptoms, and the docs keep putting my problems down to that, despite me having done a cortisol test and having abnormally high levels. (It was only a blood test - not a saliva one).
    One thing that struck me from this post, was you mentioning that your veins blew when they tried to I.V. you. I recently had a baby, and had to be induced due to liver problems. When the midwife tried to get the IV in my hand the veins would collapse and blow everytime. She tried three times, on both hands, before getting a doc to do it. At the time she was moaning about my skin and veins being weak... and I've suspected that the skin on my hands is much thinner that normal for ages now. Does this sound like another lesser known cushing's issue? Or coincidence? I'm 35, but the skin on my hands is paper thin and soft like an old ladies. Any advice would be appreciated.

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