Now....I'm sure that there are some very wonderful, competent doctors out in this big old world that we have. I have 5 doctors: my GP, my Endocrinologist, my Rheumatologist, my Opthamologist and my Gastroenterologist. I like them all. They're very nice. But I would only label one of them as competent. (i know you're wondering which one, but that wouldn't be very professional of me now would it??) I mean the others are good; I guess. They haven't let me die yet. But sometimes, well....I just don't know. I know you have a tough time now days with HMO's and malpractice insurance and now Obamacare. Practicing medicine isn't what it used to be. But you take an oath. If you don't mean it, don't take it. If you meant it once, but now are just overwhelmed, move on. Don't make your patients pay the price for something we have no control over.
I saw one of my doctor's today and it was like he didn't even read my chart. And at every office visit, you have to complete a questionnaire with 100 different symptoms on them and indicate which ones you're having issues with. Why? I have no idea!! Because he didn't ask me about any of the ones I checked!
In 2003 I began having major medical issues. Over the course of a couple months, I lost the use of both my legs and was in a wheelchair for several months; then I almost lost my sight. I went to specialist after specialist; I went to Duke. I had every test done that you can imagine for over a year. I was poked and prodded and had x-rays and this medicine and that medicine. Finally I said, enough!!! Not one of the doctors I saw could tell me what was wrong. They ALL agreed something was seriously wrong with my autoimmune system, but they didn't know what. It was a horrible time. Eventually I was able to walk again and my eyes got better, but my body was never the same. Something had attacked me big time. Something I'm afraid is still in there.
But then, as now, I would talk to the doctors and tell them what I was going through; my symptoms; how it was affecting my life. It was as if they weren't even listening. My husband would go with me and he would tell them. It was always the same thing..... "We just don't know". I began to feel like I was going crazy. Was all this just in my head? But my husband, our children, my co-workers had seen the physical manifestations of what was happening to my body. It was real alright. But through it all, I don't believe one doctor really HEARD me or SAW me. I was just blood work or x-rays or MRI's or nuclear bone scans. It was so frustrating. So I quit. Along with my husband we made the decision to stop trying to find an answer. It was taking too much of an emotional toll on an already physically debilitated body. So I just took pain medicine and learned to live with it.
This past September I got sick again. This time with my digestive system. Again and again I went to the doctor and again and again they just blew me off. Finally after 2 months I convinced them to dig just a little deeper. Well low and behold they discovered Chron's disease and Celiac disease. Imagine that! So my husband and I immediately turned our home into a gluten free zone; began a gluten free lifestyle and I started on steroids and anti-inflammatory medicines. "You should be feeling better in about 2 weeks" is what I was told.
Now, 2 months later, I'm still sick. I still feel awful. Some days worse than I did before my diagnosis. My symptoms haven't improved and some have been added. But when I talk to the doctor, when I answer that questionnaire, it's like he doesn't even hear me. It's as if he doesn't care about how I truly feel; he cares about how I SHOULD feel at this point.
Well here's a hint doc, I ain't your average patient!! My body is a fucking mess! I told you that from the beginning; I showed you the 3 inch binder I keep that holds my medical history; I told you I'm a tough cookie to figure out and you assured me it would be okay. YOU LIED!
Not in the sense that it's 2 months later and I'm not "cured". I didn't expect that would happen. But in the sense that you're not seeing ME, the patient. You're not even reading my chart to remember what happened at our visit less than a month ago. You're just pushing me through the office, giving me a prescription and sending me on my way.
Here's some news for you......I can't do that again. I know it in no way compares to what others go through, but today, when I left your office, I felt like I was suffering from PTSD. I felt all those emotions from 2003 come back; I saw myself going down the same road of test after test, being told they can't find anything, that I should be better and then just being left to feel like I'm crazy. I guess what I should say is I WON'T do that again. I just won't.
So we'll play your game for the next 7 days and if you can't give me some answers, we're done. I don't expect a cure, but as I told you today, I do expect to be heard. I do expect you to know about me and my body and why I'm in your office. Because in case you forgot, YOU work for ME! I hired you; I pay you and I won't hesitate to fire you.
To the wonderful doctors out there who truly SEE their patients, God bless you! You have no idea how much it means to us. To my one doctor who truly SEES me, I wish you could treat me for everything.
There's just too many ducks out there quacking!
So many wonderful things have happened to me since I've been diagnosed with Celiac and Chron's. So many people have reached out to help me and let me know they love me and they care.
One day I came home and found an envelope in the mail from a girlfriend. She had been going through a magazine and found some recipes on GF snacks and thought they may help me as I began this new journey.
We were having a breakfast at work and one of my friends wanted to make sure there was something there I could eat without having to worry so she stopped at the local bakery and found this bread for me.
I met with the local dietitian and she not only gave me some great advice, she gave me a bag filled with goodies and samples.
A special couple from our church heard we had to buy a lot of new items for our kitchen and they showed up at my husband's work one day with a bag full of kitchen utensils and gadgets for us.
Again, came home and found wonderful mail from 2 of my friends. An awareness bracelet and a key ring straight from Ireland with a lovely note to say she was thinking of me.
And finally a really awesome care package from the University of Chicago Celiac Center. Lots of samples; coupons; a DVD; magazines and learning material.
In the midst of what has been a very difficult time for me physically, so many people have reached out to let me know I'm not alone. My daughter is continually finding recipes for me and keeping an eye out for what I eat when we're out and about; my son and his girlfriend have brought me gluten free pizza mix and Gelato to try; co-workers posting links on my Facebook page to GF recipes. Phone calls to let me know there's resources out there; different ways to live; and delicious ways to continue to cook and eat safely and not get sick. This list doesn't even cover the phone calls, texts and emails I've received from friends asking what they could do to help and letting me know they love me and care about me.
How blessed am I? To have so many friends who care about me and are willing to show it and share it has helped tremendously with this transition. You see, depression is also one of the top symptoms of Celiac. And when you consider all the other autoimmune diseases I battle, Chron's, IBD, Diabetes, Hypothyroidism.....(i could go on) the depression is sometimes the hardest battle I fight. But things like this, friends like I have, they help so much. They make more of a difference than I could ever let them know!
And so it's my turn. My opportunity to pay it forward. To find someone and reach out to them; be a blessing to them; let them know they're not alone.
It shouldn't be hard to do. There are so many in need of so much. A word of kindness; a tank of gas; a warm meal. All we have to do is look around and there are hundreds of opportunities to make a difference in someone's life. So many have done it for me.
Now it's my turn!
Not in the sense you may think. I'm not having double vision; blurred vision; I don't see spots in front of my eyes. But Celiac has changed the way I look at things. At food; at family; at friends and at life.
For all of my adult life, up until November 26, 2013, I would walk into a restaurant and never think twice about it. I went to McDonald's; Subway; Olive Garden. I saw food as comfort, as love, and as a fun way to spend time with family and friends. My refrigerator and my cabinets were full of food. When I would go on a diet I would think about what I was eating; but for the most part, I would sit at a table or go through a drive-thru and never think twice about it. Food was good and food was fun. The taste, the smell, the texture. I loved it all. I no longer see it that way.
For now, I see food as the enemy. I know one day that will change; but not today. The way I look at food, the way I feel about food.....it's poison. It's not healthy; it's not tasty; it's certainly not comfort. I drive past those restaurants and all I can think about is what kind of poison people are paying for. Do they realize what they're putting in their bodies? I was never big on nutritional facts. I knew the basics but that was about it. I've come so far and learned so much in such a short period of time. I've learned about grains and fibers and artificial flavors. I've learned more about GMO and Monsanto than I ever thought I would know. You want to know about the Paleo diet? I'm your girl. Grain fed vs. free range? Yep. I can tell you all about it.
Now I see the label first; the ingredients first. I don't enjoy the smells and I don't appreciate the presentation until I know what the ingredients are. All of them. I've learned that I can't trust a menu that says "Gluten Free Options" and I can't trust a waitress who tells me my meal was prepared on a separate grill. My vision has changed. I no longer see food. I see poison; I see sickness; I see destruction. No grocery store is safe; no restaurant is safe. I don't even feel safe in my own home. Though we've taken every precaution we can think of, I still walk in my kitchen nervous and afraid. My refrigerator and cabinet are no longer filled with food; they're now filled with ingredients. If I don't prepare it, I don't eat it. Overkill? Perhaps. But 5 months of illness; almost 50 days missed from work; loss of appetite; chronic fatigue; brain fog; stomach pain and daily battles with severe stomach distress will do that to a girl.
For now, food is the enemy. I know one day that will change; but not today. Today my vision is skewed. It doesn't see food the way it used to; it will never see food the same way again. But one day, through continued education, trial and error and God willing, one day a cure, food will once again be my friend, my comfort and a way to enjoy time with family and friends.
But until that day comes, I'll eat with caution, not abandon. I'll enjoy time with family and friends sitting around a bon fire with a good glass of wine laughing at stupid jokes; we'll hike in the forest; swim in the lake and play poker on Friday nights. We won't worry about eating. It doesn't have to be about food. It has to be about those you love and those who love you.
Perhaps the vision hasn't changed so much as the mind has changed. Perhaps I'm finally seeing what's important in life. Not what you have; not what you eat; but who you spend time with.
But I will say this.....if family and friends were food, I'd have a feast fit for a king.
In the 2 short months since my diagnosis, I think this is the biggest misconception I have found. There are indeed thousands of people who suffer from "gluten intolerance" and they have to be as careful with their diet as I do. But the difference between suffering from gluten intolerance and having Celiac Disease is what it does to your body. The physical symptoms may present themselves in the same manner a great deal of the time. But with Celiac, not only are you suffering the physical symptoms of having ingested gluten, you're also damaging your internal organs and increasing your risk for cancer. Most people with a gluten intolerance can ingest small amounts of gluten and not suffer any symptoms. People with Celiac, people like me, can't. We will get sick. Very sick. We will miss days from work or from school. We'll suffer gastrointestinal demons that you can only imagine. The intense stomach pain; the brain fog; the extreme fatigue. It truly is as if we've been poisoned. The scary part is that with all those physical symptoms that most people can see or get an idea of, is the damage that is being done to our intestines and our bowel that can't be seen. Every time gluten enters our system, a little more damage is done. Damage that can lead to cancer; even death. So it may seem like a simple thing "Oh you just can't eat bread", but it is so far removed from just giving up bread; we wish that's all it was.
When I started this journey I thought that it was mine and mine alone. But on November 27, 2013, the day Dr. Newcomber said "You have Celiac Disease", my husband turned to me and said "We're in this together. You're gluten free; I'm gluten free." Our daughter began researching recipes and different items where gluten is hidden. Our son said "I'll get tested for it but I'm not eating that crappy food!" Don't you just love guys?? You see, our children have an increased risk of carrying the gene that causes Celiac. In their lifetime they will probably be afflicted with this disease. Hopefully in MY lifetime, I can get a lot of the legwork done for them so it will just be a way of life when and if their time ever comes.
Then there's the support groups on Facebook. People I've never met; people I will probably never meet. But friends now. From Rhode Island, to California, to the United Kingdom. People coming together to give support, share recipes, answer those embarrassing questions we're afraid to ask anyone else. People who can say "Been there, done that."
And finally there's my friends. An envelope appears in the mail with recipes cut out of a magazine; an "awareness" bracelet appears from Florida; for the Christmas party at work gluten free food is brought in so I don't feel left out; recipes posted to my FB page; text messages and phone calls on days I'm sick. Offers to drive me to the dr., the hospital and be with me while I'm having test after test done. True friends.
I knew last year my life would change. I had just become a grandmother; I had turned 50 and I was finally getting healthy and in great physical shape. "Tell God your plans and sit back and watch Him laugh!"
That's ok, God. I know you're in this with me too. There's a plan and a purpose for all of this that I may never know. It probably has nothing at all to do with me. I'll suffer for whatever will glorify you.
There's going to be some bad days ahead; but soon they'll be further and further apart. The depression will subside; the cross contamination will happen less; I'll be able to wean off the steroids and I'll be able to cook and eat without thinking twice about it. Until that day comes, it's a journey. Every minute of every day.
But what's that old saying....."It's not about the destination, it's about the journey". The journey isn't always pleasant; it isn't always about sunshine and rainbows. But with a loving family and supportive friends, the journey will be full of laughter and music and dancing. A few tears here and there, but mostly, we'll dance!
