I was intending on posting something today about what Celiac Disease is. This week, however, my thoughts have been elsewhere. My Celiac is uppermost in my mind, no matter what is happening in my life. It has to be. If I am not vigilant, I could accidentally ingest gluten and make myself sick or worse. It's not as if you can just "take a break" from being Celiac and living gluten free. Your body would pay some severe consequences if you did!
This week my mind has been with my grandma. She is a feisty 92, nearly 93 year old woman who has lived through more than you and I can imagine in her almost a century of life. The stories she has - I've been hearing them my whole life. I think, actually, that she is a big part of the reason that history fascinates me. Because she lived so much of it and has told me firsthand accounts of things that she has witnessed or experienced.
G'ma lived on her own until just this past Fall, when we moved her into an assisted living facility not far from where we live. That's pretty amazing when you think of it - to still be living on your own when you are 92 years old! Not long after moving into the assisted living facility we got news that her sister-in-law, my G'pa's "baby" sister had passed away. Aunt Lorene was about 10 years younger than my G'ma. G'ma's outlook kind of took a downward dip after Aunt Lorene's death. She's so sad that she's still here while so many dear family members and friends who've been such an important part of her life for so long have passed away. I think she's tired of being the one left to say good-bye to all of the rest. In this past year, she also learned that her only surviving sibling, my Aunt Jean is in early stages of Alzheimer's. This has not only been a tough year for me going through all of the major life changes that my Celiac diagnosis has brought about, but it has been a really tough year for my G'ma as she's gone through such severe life changes herself.
This past Monday G'ma ended up going to the ER due to suspected tia (mini-stroke). She's had a few of these over the past several years, none of which have greatly affected her, though I do believe each one has chipped a little away at her short term memory (she does not have Alzheimer's, but she does have a hard time remembering new things, dates of events and she gets confused now and then - partly due to her hearing loss and partly just because of normal old age issues). While at the ER (my mom took her there and was with her the entire time), G'ma mentioned that she had a sore throat. All of her tests came back fine, but since she had a sore throat the doc decided to do a throat culture to be sure she didn't have strep. While they were waiting for the results of that test, G'ma complained of a heaviness in her arms. She didn't feel right. I was on the phone with my mom at this time and she and I decided that the doctor needed to know about this immediately. They admitted G'ma to the hospital and we later learned from her new test results that she did, in fact, have a small stroke (more than a tia). She has been in the hospital since then.
This dear lady doesn't understand why she's still here. Don't get me wrong, she doesn't have a death wish, but when you get to a certain age and have buried so many people you love it has to wear on you. We've really witnessed her go downhill so quickly in the past few months. We were hopeful that she might be able to live in assisted living for a couple of years, but that is not to be. When she is discharged from the hospital she will be moved immediately into the nursing home. Thankfully, the nursing home is in the same building as the assisted living where she's been. The staff on both sides have been simply amazing and so loving toward not only G'ma, but our whole family. They have bent over backward to make her comfortable and get her involved and, frankly, in order to help her stay in assisted living, they have gone over and above what they should to help her to stay there. We've got nothing but good to say about the amazing staff there! I know they are just about as sad at the progression as we are.
And, yet, even with everything that my G'ma has been through this year, she has been so concerned with me and my health issues. She's asked questions about my Celiac and what it means for me and has shown concern over what I can or cannot eat. That's been pretty humbling for me. At this time, she is still with us and is going back and forth between feisty and sad to still be here. I think there are many emotions warring inside of her. Yesterday she got a very special visit from her sister, who's daughter brought her. That closed out the year on a lovely note and I think that is the note that I will close this post on.
Whatever is happening in your life, embrace the ones you love, find strength and hope in them and keep going. The struggles can be almost unbearable at times, but we don't have to go through them alone. Happy New Year and may God richly bless you and yours in the coming year!
2014 has been a year of new experiences and learning for me. I began the year with a trip to the Emergency Room on January 12th via ambulance with a severe anaphylactic attack of unknown origin. I suppose I should give you a bit more background of what was happening to me leading up to this point.
My name is Margo. I live in the Midwest part of the US. Roughly 25 years ago I was diagnosed as having an autoimmune disease called hypothyroidism. This disease affected many areas of my health and life. Thankfully, there is medication that can regulate my TSH levels and keep my thyroid in check. However, many of my symptoms of hypothyroidism continued through the years even though all of my levels were where they should be.
As time went on, new symptoms appeared. Many were things that I didn't even recognize as symptoms. I will talk about these in a later blog post. Nearly four years ago I developed some newer symptoms that took my mind off of the other symptoms I had. I broke out in hives that covered my entire body. These were not just your run-of-the-mill hives, small, itchy bumps. Nope. These were huge welts! The welts were nickel to quarter sized and often appeared in clusters that were roughly 3 or more inches in diameter. I had these welts in my hairline, the palms of my hands, arms, legs, torso and other, unmentionable places. In fact, the only place I didn't end up with these hives were the soles of my feet. I pretty much had them 24/7 for nearly 3 years! And they ITCHED!!!!!!!!!!!!!!!! Oh, did they itch!!! I would slather on the calamine lotion, pop Benadryl like Tic Tacs and nothing brought relief. My poor skin was so raw from scratching. And, as horrible as this new symptom was, it wasn't anywhere near the worst! At least once a week I was having minor anaphylactic reactions. I say minor because my throat wasn't closing up on these. I would feel a tingling sensation on my eyelids or my lips and shortly thereafter, wherever the tingling was began to swell. Periodically, these minor reactions would turn into major ones and my entire face would swell up and I would lose my voice. It never occurred to me that I was losing my voice because the reaction was causing my throat to close off. None of these reactions ever affected my breathing, however, each time I had one of these more severe reactions they would be progressively worse than all of the previous times.
I saw several different doctors as well as an allergist, but no amount of testing could give us an answer. Even my doctor was getting frustrated at not being able to find out what was wrong with me. This went on for nearly 3 years before my trip to the ER this past January. That anaphylactic reaction was the most severe that I'd ever had. It hit hard and fast! I took three Benadryl at the first tingle I felt in my left eyelid. Within 5 minutes my entire face was swollen and I was having difficulty swallowing. My husband loaded me into the car and took me to Urgent Care. They'd been able to help me before, so we thought they could this time, too. I was able to breathe, so I didn't think I needed the ER. WRONG!!!!! When we got to Urgent Care, they gave me a shot of epinephrine. This should have slowed the reaction down. It didn't. I continued to get worse. They wouldn't release me to my husband's care, but instead called an ambulance, stating that it was unlikely that I would survive the trip to the ER if I didn't go by ambulance. SCARY!!!!!!! The paramedics with the ambulance were awesome! In fact, everyone who helped me that day - I literally owe them my life! In the ambulance on the way to the ER - we were about halfway there when all of a sudden it felt like an enormous weight had been dropped on my chest. I couldn't catch my breath! Panic is the worst thing that you can do in a situation like this, but panic is the first thing you feel! Corey, the paramedic in the back with me, gave me another shot of epinephrine in my iv line. This relieved the pressure on my chest and opened my airway again! At the hospital, I was given a third shot of epinephrine in my iv as well as Benadryl, Prednisone and an anti-nausea medication and something to slow my heart rate, which was going nuts because of all of the other meds in me.
In the meantime, my regular doctor had been contacted by Urgent Care and he began reviewing my entire medical history, not just the previous three years of symptoms. That's when he came to the conclusion that the only thing he hadn't checked me for yet was Celiac Disease. I'd heard of this in my own family, though I didn't realize it was something that is hereditary. I am not the first member of my family to learn that I have this disease. My first thought after diagnosis was sheer relief that we FINALLY had an answer to my problem. Oh boy, did we! I had no idea how many of the health issues that I've had through the years could be attributed to Celiac Disease. I will talk about the symptoms of Celiac Disease in a future post. After getting my diagnosis, my doctor advised me to research Celiac Disease and immediately begin a gluten free diet. I had absolutely NO idea what any of that really meant. I was so thankful to come across a book called, "The Gluten Free Bible" by Jax Peters Lowell. There was a ton of great information in that book that helped to guide me. Then I started researching everything I could find about Celiac and Gluten Free online. Some wonderful blogs and Facebook pages came to my attention and to them I owe a world of gratitude. Without them I would have had a much more difficult time navigating my first year of living gluten free after diagnosis. Some of the pages I got the best information from were Pretty Little Celiac, Celiac Diva, Jennifer's Way Bakery and blog, Gluten Dude and of course, Celiac Foundation and Mayo Clinic. I discovered a wonderful box club called G-Free Foodie that I got a membership with and each month I receive a box full of a variety of gluten free foods and products along with information, recipes, etc. They have been a godsend this year!!!! Along with Jennifer's Way blog and her Facebook page I bought Jennifer Esposito's book, "Jennifer's Way: My Journey With Celiac Disease - What Doctors Don't Tell You and How You Can Learn to Live Again". Even more than the first book I bought immediately after diagnosis, this book has given me so much more information than any other source I've found. It also gave me something else - HOPE. You can learn to live with Celiac Disease. I consider that I am still learning, but considering that in those first few months I was afraid of pretty much all food, not knowing or understanding what was safe to eat, so I was eating very little, I have come so far in this first year. And, I am very happy to report that, at the end of this first year of living with Celiac Disease and being totally gluten free - I am healthier than I have been in more years than I can remember. I know that my body is still healing. After all, I estimate that I was living with undiagnosed Celiac Disease for probably at least 30 years before finally getting the right diagnosis. Celiac Disease is also an autoimmune disease, so that does leave me more vulnerable to illness - having two autoimmune diseases. But, this has been such a change for the positive for me health-wise, physically and mentally. I look forward to sharing more of my story as well as getting information about Celiac Disease and living gluten free in future posts.
