So for those of you who have followed my journey on this blog, you will know that I have had Crohn's disease for most of my life. In 1994 was when the diagnosis was made upon a visit to emerg where they removed 18 inches of my bowel. Since that time, I have been lucky enough to live a somewhat normal life, free of the dreaded predisone and other types of meds. However, 20 years is a very long time to go without any repercussions.
Several months ago I had a colonoscopy which had determined that over time, the area which was resected had strictured to a mere 3 cms. Which is not very big. As wide as 3 dimes stacked. So I have been seeing a very wonderful and knowledgeable gastroenterologist who has gone over several options with me as to how to proceed. Such a stricture can make digestion well, difficult. So with that, we determined that I would begin Remicade infusions monthly, so if I have surgery, the healing process will have already begun.
Now comes the fun part. Remicade isn't cheap. It's $6,000 a pop. However, that being said, I have coverage through my work, thank God. Except they don't want to pay for the drug. This after I have already had 3 going on 4 infusions. I have bloodwork done monthly and my inflammation markers have gone down quite a bit since on this drug, so to me, it is working. Why would you not want to continue this?
Because insurance companies are greedy, heartless bastards that's why. Companies pay HUGELY into these plans so when people need coverage they have it, right? Wrong. They want to cheap out and put me through 3 months of Imuran, which is an immunosuppresant. It also carries a small risk for developing cancer. Yeah, that's all I need.....but that's ok, Great West Life. You just cheap out on my treatments to save a few million dollars. Perfectly understandable *insert sarcasm*.
So tomorrow I start on the Immuran for the next 3 months. It's not going to work. But we have to play the game. At the expense of my health. Well played, Great West Life. Well played.
Monday, January 5, 2015
Wow, it has been over a year since I made my last blog post. Where the heck does the time go? I have thought about writing so many times, but for some reason, I have not put my thoughts down.
Since we talked last, lots of things have happened in my life. In September 2013, I met the man of my dreams. My best friend. The person who loves me like no one else has ever loved me. His name is Ken and he has filled my heart with so much love, at times I thought I was going to burst. Here I was 40 years old, failed marriage, 5,000 kms from my home and family, living alone, but filling that void with going to the gym and not much else.
I was doing so good. Down to 196 lbs for the first time in forever. And now here I sit. Bigger than ever. I have no one to blame but myself. I let myself slip out of that routine of going to the gym and eating healthy, and becoming so comfortable with the one I was with that I have turned into a blob of jelly.
Now I will state a few things for the record. In the last year plus, I have had some medical issues with my Crohn's disease which have thrown a wrench of some sort into my routine. After visiting a gastroenterologist and having a colonoscopy, it was discovered that since my bowel resection 20 years ago, the resected area has narrowed to a mere 3 mm. Which is about the thickness of 3 dimes. I eat, it goes down so far, and sits. Like food stuck in a food processor without any blades. My stomach gets swollen and bloated and I feel like crap. I go to the bathroom with vehement force, and then am hungry minutes later.
The Dr. then decided to start me on monthly Remicade infusions. I have had 3 already with the 4th coming up the end of this month if my insurance company ever decides that they want to pay the $6,000 a pop to cover it. Don't even get me started on that. WTF do you pay premiums for if they aren't going to cover it?
I have also had numerous issues with food sensitives and in-tolerances. A blood test determined that I had an egg allergy, which pisses me off, because breakfast was eggs for me. Scrambled, hard boiled, omelettes...ugh. Avacado is another one. Bent over, stomach bloating, feel-like-your-belly-is-gonna-explode type of pain, Same with spaghetti squash. I have eaten these things many times before, but for some reason, my body is putting up the road blocks and not wanting to deal with them.
It is becoming increasingly maddening, to say the least. I wish that I could find the person who could sit down and figure out what the heck I could eat that would please my hypothyroidism, Lupus and Crohn's all in one fell swoop. Like invent some kind of magic "Charlie and the Chocolate Factory" type of pill.
I truly love to cook and eat well. I really do. And for the first time in 2 years of living in this town, I have an apartment with a REAL STOVE!!!! Do you know how challenging it has been to cook on a two burner cooktop and a toaster oven?
Remicade has also left me extremely fatigued and playing havoc with my bladder. When you got to pee, there's no holding back. It also has reduced my already shite immune system, which left me sick with some nasty sinus/viral infection for 15 days over Christmas.
So here we are, January 4th, 2015. Back to square one. I feel like a yo-yo. I have a lot of support from my family and friends and my sweet fiance. But when it comes down to it, the oneness is on me and me only. I need to push through the pain and fatigue and hunger and illness.
The gym bag is packed and by the door for tomorrow. God help me.