My Journey to Write
A lot of you know me already – and thank you for stopping by. I started writing my first book as a distraction. For eighteen months I’ve been undergoing a slew of various medical tests and couldn’t pursue my previous occupation as a Realtor and property manager.
The fall in the market and the lack of business were the impetus I needed to finally look at my health issues instead of blissfully ignoring them any longer. I won’t gross you out with details, but there is only so long any adult should ignore gastrointestinal problems and I had hit the point of no return in February of 2008.
I knew I needed to seek medical advice and I turned to the internet hoping for self diagnosis. I had all the signs of Celiacs, but no one in my family had it. I discovered after many blood tests and just prior to my first colonoscopy that my father has Crohn’s.
I was resigned to the fact that perhaps it’s what I had. Oddly enough – I have no blood indicators for Crohn’s or Celiac’s. No signs from the procedure that I might have Crohn’s so my doctor sent me home with a prescription that has a side effect known to help with my chronic intestinal problem.
Of course, my chemistry background and love of science rears it’s head whenever I’ve got an outlet for it. I always read all the literature that comes with the drugs the doctors prescribe. After all, how can you know if you are suffering from a side effect if you don’t know what they are? The medicine suggested for me was not going to be good because its primary function was to lower cholesterol and mine was already at 139 – numbers below 120 can actually cause health problems, so why borrow more trouble? I tried that doctor again and was in tears (and I’m so NOT a crier, maybe it was PMS or something) when the physician’s assistant told me I’d just have to live with the symptoms. Jack ass.
I went to a NEW doctor. The one I originally wanted to see and couldn’t get into for months – a Dr. Ryan Crenshaw. This man took me seriously. He did not dismiss my problems, but ran a battery of tests to find out the issue. The tests were not fun but they were necessary. Rather than type on and on about it all I’ll jump to the end. After a fluoroscopy, an endoscopy, a video capsule, skin prick tests, skin injection tests, food patch tests and months of elimination diets I have the answers I need.
I have some auto-immune diseases and even if that knowledge should scare me it doesn’t. It has empowered me. I know have the information I need to take care of myself and don’t wonder what the hell is wrong with me anymore.
I suffer from two related conditions. The first one was discovered in January ’09 and it is a food allergy that prompts my body to attack my internal organs. Right now, the white blood cells are focusing on my esophagus, causing it to spasm and close when I consume the offensive item. The spasms can last for hours and leave scar tissue behind along with a bunch of white blood cells that think my esophagus is the enemy. The disease is called Eosinophilic Eosphagitis- EE for short, and it’s not really that uncommon. Most people don’t know they have it.
I’m one of those folks that had it for so long my esophagus had to be dilated open with a balloon because the passage was so constricted. Overall, it’s not bad, and something I can live with. I feel awful for kids when they get it – the condition can be quiet debilitating for them, from what I’ve read.
Next, after my second colonoscopy, we discovered purely by chance that I have Celiac’s. I had been on an elimination diet of no wheat prior to the procedure for three weeks. I went through the whole liquid diet prep and decided to treat myself that night after the ‘cleanse’ to a few sips of beer.
Hey, it’s a clear liquid, I’d had a pretty rough day and I was freakin hungry.
My throat started to close on the third drink. I couldn’t believe it! Here I was worried about wheat and it was the barley in the beer! I found out later that wheat, barley, rye and sometimes cross-contaminated oats contain the protein gluten. The offensive item I must be allergic too!
I excitedly shared the news with my doctor after the procedure and asked if I was allergic to gluten or had Celiac’s – and really what was the difference? He said that despite the blood work and lack of physical evidence (b/c most signs are in the small intestine and they just can’t get far enough in there to check and take biopsies without surgery) if my throat was closing then that was serious enough to say yes, I have Celiac’s.
Answers! Wow! I felt on top of the world. Life has been different since my diagnosis, but I’m glad. I have a hard time eating out and yes, I find out the hard way something has gluten hidden in it when my throat closes – but hey – I can breathe, it’s not like it’s anaphylactic shock or anything that serious.
In this long course of events I have written a book. A book I’m proud of. It’s not a literary achievement. It’s not a soul searching mind altering read. It’s a fun book. An escape, if you will. One I desperately needed to keep my mind off of all the appointments, tests, food elimination diets and – oh, let’s not forget – negative results from almost every damn test.
With any luck, a whole lot of work, and a tremendous amount of support from my family and friends this book may actually make it to the market and sell.
Two weeks ago (as of Sept ’09) I sought treatment for a new development. I’ve started to have a tingling in my hands and feet that lasts for hours. So far we’ve ruled out diabetes and it has been discovered I have a vitamin D deficiency, more than likely due to the Celiac’s and lack of absorbtion of nutrients. Simple to solve, I take a pill, right?
Not so simple. Why is it so low when my Celiac’s has been under control since June and I spent all summer outside with my kids getting plenty of sun (and yes, I’m lazy and pale, I only put sunscreen on my face so that perhaps the rest of me will not look like one of the vamps in my story).
I’m being tested for Multiple Sclerosis now–another auto-immune disease. What are the chances? Could I seriously be that unlucky? Could I actually have three things diagnosed in the span of ten months? I don’t think so and that’s where I’m sticking until the neurologist tells me otherwise.
Hell, it could more than likely be the vitamin thing. Or even Lyme’s (which I’ll find out today). It will take months of vitamin supplements to fix the issues that have cropped up over the deficiency, so that’s where my money is. I’m betting on that.
Seriously? Could the fates really be so cruel that I wind up with MS and can’t have pizza and beer ever again? I don’t think so. I’m just not that much of a bitch to have Karma come back on me like that. Well, at least I don’t think so.
I had my main writing buddy, Supriya, tell me on the phone recently that maybe it was Karma. After I closed my mouth in shock I asked her “What?” Apparently there are different ideas about karma and I’m too ignorant to know it. I thought it was a philosophy of “what goes around, come around” type of thing.
She went on to explain that I’m so lucky in so many areas of my life–our home, our kids, my loving husband, my skills with building and organizing, my rapid fire brain that doesn’t turn off, my logical deductive reasoning that leaves her stunned and confused–that perhaps it’s Karma’s way of balancing me out.
That the universe has to slow me down and even me out a bit. Of course my snarky rejoinder was “What you’re trying to tell me, is this is a set back from Karma so I can’t rule the world?” Me and my closest friends often joke about that. My motto has always been “lead or get the hell out of my way.”
I’ll keep you posted on the outcomes this week. But for now, I’m firmly floating on the river of denial. I think it’s vitamins and until someone with lots of degrees can tell me otherwise, that’s the way it is.
Update, March 2010: I was diagnosed with Lyme’s diesease. After a spinal tap, a CAT scan, and four MRI’s, not to mention numerous specialists, the good news is my issues are probably not MS, but related to all the Lyme’s disease side-effects. And while the symptoms are pretty serious, the doctors are hopeful I will not wind up with Chronic Lyme’s, a situation normally occurring when a person has been untreated with Lyme’s for a long time. The guesstimate is I had it about six months or so before treatment started.
I’ve gone through ten weeks of oral antibiotics and am just finishing a four week stint of an IV drip I administer daily, here at home, through a picc line in my arm. I’m hopeful this last treatment will kill the bacteria raging through me, but the two auto-immune diseases I have make me a risk. The infectious disease specialist doesn’t normally work with people that have them while battling such a severe case of early Lyme’s, so time will tell. He’s not sure if more medication will be needed and we’ll find out as the months un-fold.
I’m hopeful and I can guarantee this won’t slow me down much. As Supriya often jokes, “now you’re brain works like the rest of us – at normal speed.” Ah…gotta love your snarky friends! 😉