My LAVH surgery (hysterectomy) last week was by all appearances a success: My uterus and cervix are no longer with me, but my ovaries are, which means that menopause will come at its own sweet pace. I'm not in a rush for that!
I learned that morphine gives me a wanging headache and nausea. I have learned that I am not alone with these side effects. Why, oh why haven't they come up with some different pain med to start with?
I also learned that distraction, meditation and sleep are darned effective pain management techniques themselves. Whew!
The day after surgery, I felt pretty lousy. Abdominal pain, headache, nausea. I knew I'd feel better at home. The requirements for getting released? 1) Walk; 2) Pee; 3) Eat solid food and keep it down. I figured I could handle #1 and #2, but #3 was going to be a challenge, both from a physical point of view and a logistics point of view. From my pre-hospitalization research, I knew that most of my friends and acquaintances with celiac advised that I not trust the hospital food service to not cross contaminate. I learned from the dietitian at the hospital that they (think they) have pre-packaged gluten-free breads, chips, and cookies, plus they could steam vegetables, etc, and that they would be willing to go to great lengths to bring me whatever would be suitable. That sounded promising, but I decided to not trust them anyway, and I brought a pureed pumpkin soup and a pureed squash soup from Trader Joe's and a microwave-safe bowl so that if I wanted it, my partner Jenn or a nurse or aide on the floor could nuke it for me. I still felt pretty queasy, but I thought I could manage the soup long enough to get out of the hospital. By this time I had been off the morphine for about 12 hours, and I was loaded with anti-nausea medication, so I figured I had a 50-50 shot at success. Unfortunately the nurse ruled that pureed soup didn't count as solid food and that I'd need something more.
Argh! Should have brought some gluten-free crackers! The hospital's food service machine was invoked to see what might be on hand. I was actually quite surprised that in less than half an hour a gluten-free vegetarian tray of solid food appeared. The broccoli and green beans were WAY overcooked, so I'm guessing that they didn't boil 'em up special for me, increasing the possibility of cross-contamination. They did bring packaged and clearly marked potato chips and cookies, which turned out to be my ticket home.
So, my advice to you for your next hospitalization: Like me, you may not be interested in food at all, but take something just in case. I had a gf clear broth that Jenn brought for my liquid diet day, and comforting sounding soups for my solid food day. I wish I had packed some mild gf crackers, since hospitals and nurses seem to understand that crackers = solid food. I think that hospital food service will get more responsive over time, but the distance between the room and the kitchen is a very wide gulf and there is no real way to reassure a gluten-intolerant patient that food handling procedures are safe. I'd actually suggest to any hospital listening that they do like the airlines and get hermetically sealed microwavable gluten-free meals to increase the consumer's confidence in the product.
My surgery +5 day postscript is that I am amazingly uninterested in food. I'm not hungry and nothing sounds good. Coffee is gross. Sleep, meditation, distraction and pain meds are very popular with me right now. I know this is temporary, so I'm trying to appreciate the gift of enforced rest and all of the warm wishes from family and friends.
There is some evidence that the gluten-free diet reduces painful symptoms of endometriosis. Of course, I didn't know I had endometriosis or a big fibroid until a couple of months ago. I've been on the gluten-free diet for several years, and all I can say is, boy, I guess I would have been really miserable now if I hadn't gotten the celiac diagnosis in 2010. There is also an indication that women with endometriosis are more likely to have celiac disease (here's a link to a good summary.)
I'll admit that I might have been one of the handful of women in the western world that didn't really know what fibroids or endometrial cysts were until recently, but my easy and highly technical explanation for those who are also unaware is that there is a bunch of extra goop and blobs of stuff that should have been reabsorbed into my body that have attached themselves to my uterus and ovaries, and maybe other internal organs or surfaces.
Doctors are fond of comparing these tumors to the sizes of various food items. So, to give you some scale, my fibroid, which has fully engaged the interior, wall and exterior of my uterus, is around the size of a tangelo. My right ovary, which should be the size of an almond, is more the size of an avocado. I recall that my mom had an ovarian cyst in 1973 (maybe they would call it an endometrial cyst now?) was the size of a grapefruit. Goodness! These things cause fertility problems, but for women like me who don't want to get pregnant, mostly the medical community suggests trying to wait these things out. Once menopause comes along, nature takes its course and the things shrink or go away. One big symptom is painful and heavy periods, and once a woman doesn't have a period anymore, then no big whoop. Women are supposed to be able to bear a great deal of discomfort and blood loss on a regular basis, right?
I do sort of agree with the "wait it out" approach. I'm not one to over-medicalize a situation if I don't need to. However, I have been anemic for the better part of 30 years. My anemia piqued my hematologist's suspicions that celiac might be the cause. Turns out he was right about celiac, but the anemia hasn't substantially improved as a result of the gluten-free diet. I still go for regular iron infusions through an IV drip, a process that takes more than two hours in a chemo ward overlooking Washington Square Park, usually once a month. I have continued to search for (and so far, rule out) other possible causes of blood loss. For example, I've had an endoscopy and colonoscopy to confirm that the lining of my small intestine has healed, and I don't have ulcerative colitis. Which brought me back to menses, the thing my doctors told me all along was the cause. But how does a person know if her period is unusually heavy? Sure, it seems heavy to me, but I've heard stories from other women that make my monthly tale a mere trifle.
Plus, for every visit to the gynecologist in my adult life, I have mentioned painful cramps and heavy bleeding. To a person, they've told me that if I would just get pregnant it would all get better. Or how about I go on the pill? I did try the pill once maybe 10 years ago, the kind that you just take and take all the time and never have another period (Yasmine, which I see on the class action commercials apparently caused some women A LOT of problems.) I took it for maybe 3 weeks, when I experienced "breakthrough bleeding" while wearing khaki pants on a light green cloth sofa (fortunately I hadn't left for work yet!). I decided I'd rather bleed when expected and I never liked the idea of jacking myself up on hormones anyway, so I stopped taking it. So as I closed in on "heavy monthly blood loss" as my cause of anemia, I was mentally debating whether I would be open to the hormone discussion again.
It was my primary doctor who told me that the anemia had really gone on too long and that I should consider a hysterectomy. I didn't think an insurance company would pay for an expensive intervention if they could just throw pills at me, but she assured me that the monthly iron infusions were enough evidence that the hysterectomy was a medically sound next step. First though, I'd need an ultrasound to see what was going on. Then I'd need to find a gyn (my Yasmine provider isn't practicing anymore), and not just any gyn, but one that specializes in women's bodies specifically and not in childbearing issues. The ultrasound indicated a fibroid and an enlarged ovary, so when I met with the doc, she said H word (hysterectomy) along with some other options, but that I needed to have an MRI to get a better idea of what would be required. Off to the MRI people (my first time for this procedure too. I don't get especially freaked out in small spaces for short durations, so no big deal, though I had no idea how loud it would be.) Then back to the gyn, who confirmed that the fibroid's occupation of my uterus' interior, walls and exterior would indeed require a hysterectomy. And then there were these endometrial cysts. I'm not sure how much of that is going on, other that it's the cause of my enlarged ovary. I'm hoping to keep one ovary to postpone the onset of menopause for as long as possible.
So, in the months and weeks leading up to the surgery, which is now scheduled for next week, I've taken the following steps to prepare:
1. I had one last unpleasant period, for old time's sake.
2. I called my cousin the nurse to find out what a hospital stay would be like, since I haven't been hospitalized in almost 30 years.
3. I polled my celiac friends and acquaintances and discovered that I should, in no way, shape or form, trust the hospital food service to not serve me cross-contaminated food.
4. I discovered a great website, www.hystersisters.com and learned what pre and post op life would be like from real women who've lived it.
5. I've learned that LOTS of women in my life have had some version of this done. They were all appropriately supportive and gave me an idea of what would hurt and for how long.
6. I did my best to get all my work projects in good shape, or in the hands of a team member or colleague who will guide them through until my return. There's a bit of guilt and worry associated with being out of the office for 6 weeks, but I work with some really great people who want what's best for me and who will help pick up the slack in my absence.
7. I bought a new (used) car. Okay, I was planning to do this anyway, but the research and test driving and all that were a fun distraction in the weeks leading from scheduling the surgery to going under the laproscopic knife. And there was a tiny bit of mid-life crisis rolled into it. Sure, I kept it practical and inexpensive by picking a 4-door hatchback Kia Soul! (31 MPG highway), but I was determined to have a stick shift, a sunroof and CD player. And not only that, but the one I found is orange with a black racing stripe AND a spoiler!
8. I want to mow the lawn and clean the bathrooms, since I don't think I'll be able to do that for awhile. I've also been imagining where I'd like to spend my time immediately after surgery when mobility is low. And I've been thinking about low energy activities and projects that I can work on so that I don't get blue. The list includes sitting in my new used car and reading the owners manual to figure out how to operate all the stuff I've never seen in a car before. Apparently I can just tell it to call people. What? Lots of people have suggested I watch their favorite TV series from the beginning of time. Maybe. But I picture myself scanning our wedding and other pre-digital photos, or working on my next e-cookbook with either HGTV or Xena reruns on in the background. And walking. Lots of walking. I'll keep you apprised.
The Philadelphia Gluten-Free Potluck Meetup Group joined with the Greater Berks County Gluten Free Social and Support group (and unofficially the Gluten-free in Delaware County Meetup group, since we have three crossover members!) for lunch at Tomato Bistro at 102 Rector Street Philadelphia's Manyunk neighborhood (19127) for pizza and fun yesterday. We had a good time as always, laughing, sharing and talking about FOOD! Thanks to Jessie and Cathy for organizing, and thanks to Cathy for always remembering to take pics (and I'm sorry I didn't remember to offer to take one with her in it again this time.)
Corley came along (he LOVES pizza), and even though he got his very own whole gluteny pie, I did ask him on camera what he thought of the gf white pizza. Short and sweet, here it is.
I enjoyed the pizza, and it was fun being with a group of gf folks so we could order a bunch of different kinds and all get to try them. The pies are decidedly gourmet. The one that I didn't try had duck on it, and we had a fig and bacon sans the bacon, a margarita pizza, a veggie pie that we made up (asparagus, spinach, tomatoes, onions and some other stuff) and a fancy white pizza. It was all very good, but I especially appeciated the care they took in preparing and serving it to avoid cross-contamination with glutenous pies. They even brought out never-been-used-before disposable pizza cutters for us to us (I brought one home, so maybe not so disposable.) Oh, and the salad was delish!
One challenge my family has is deciding where to eat out as a family. The boys' favorite place is Olive Garden because of the endless breadsticks and salad in addition to a big serving of cheesy pasta. Olive Garden does have a gf menu, but frankly their gf vegetarian pasta options are nothing I want to spend $10 on, and so when we go there I eat copious salad with dressing on the side and wish I had better gf options. Corley allowed that Tomato Bistro would definitely be a place he would be open to going out to eat at with the family (Jules Thin Crust Pizza most definitely DID NOT get that vote -- the pizzas were too skimpy and fancy for my voracious and basic pizza eating kids), so that is truly a ringing endorsement.
A final word is that I actually like the crust at Seasons and Uno's Chicago Grill better, but family experiences at both weren't that great and they didn't get the "Best Place to Take a Mixed Gluten Requirement Family Award." I'm not sure Tomato Bistro will get that award either (eating with a family in Manyunk has challenges that are not related to Tomato Bistro at all, like crowds and parking), but it's definitely still in the running. All in all, a nice and delicious outing at a place that really knows how to take care of its celiac and gluten intolerant customers. [Oh, and Sunday Nights are Gluten Free Nights at TB -- I'll have to check it out sometime!]
May is Celiac Awareness Month. For my part, I'm GIVING AWAY electronic copies of my new cookbooklet, So What CAN You Eat? Gluten-Free Paleo Vegan (mostly) Recipes for Health and Weight Loss. (It'll be for sale at the Amazon Kindle Store later today.) It has 19 fast, easy, nutritious, gluten-free recipes plus tips and strategies to support healthy living.To receive a copy, sign up for my mailing list at the home page of the website and you'll receive an email with the link for the download. In addition, I will be doing a guest "blog" later in the month at http://iamjtheblog.wordpress.com/. More details to follow.
Also in honor of Celiac Awareness Month, I invited GFDougie to write my first ever guest blog post. Dougie and I met via Twitter. His celiac history is very different from mine and his story of being a non-compliant celiac kid gives me empathy for my own kids who are growing up with their own special variety of "different."
Good day to you. I’m going to take you on a personal journey of the how and why a kid blatantly cheats with gluten while having been diagnosed with celiac disease. I hope this personal journey will help you understand what you can do to help support and educate a celiac kid live gluten-free; and likewise, a celiac kid to gain the mental tools of fortitude and strength to obtain the courage to lead a gluten-free lifestyle.
At the time of this writing, I’m in my 40’s. Where has the time gone? It seems just yesterday I was a kid in Elementary and Middle School! A kid that was diagnosed with celiac disease at just under the age of six – quite a remarkable short time-frame for United States’ celiac disease diagnosis average!
It is yesterday and I remember the slamming of the locker doors, the blackboard and the chalk, and the lunch room smells. Oh the lunch room smells – a mixture of putrid yet palatable flavors hanging in the air. Being a celiac kid, I of course brought my lunch from home. The usual fare is peanut butter and crackers, an apple, and Kool-Aid. Oh there were other variations of lunch from home, but this one stands out as I usually started gagging the second cracker “sandwich” down as the crackers were so dry. I remember being tired of living as a kid with celiac, being different, and being made fun of for the strange lunches I brought to school. How do I fit in better with the other kids? Cheat and eat wheat! I’m no longer different as I eat “mystery meat,” cheese pizza, chicken-fried steak, yellow cake, and peanut butter cookies. Even though I ate breakfast at home, breakfast at school is better! Honey Grahams brand cereal is a favorite of mine. Because I’m eating like them, I’m included with the other kids now. I’m accepted.
I remember cheating with gluten in spurts throughout my young life. Why? One major factor was social acceptance. Social acceptance and peer pressure among kids are a strong force to reckon with. Differences are not tolerated and are made fun of. Conformity with other kids is the on-ramp to the highway of acceptance. Another major factor was convenience. Convenience and gluten-free mealtime do not equate. It’s just a fact of reality. Special foods can’t be picked up just anywhere, enduring the pre-assembly of food combinations so dry items don’t get soggy, and eating everything homemade instead of from the vending machine like everyone else. A third major factor is the quality of the gluten-free food. To say the least – crumbly and grainy texture, bland flavor, and sub-par food product structure are nice words and phrases to describe gluten-free food at the time. Why go through all this mental upheaval and hassle when a normal meal is waiting for me at the school lunchroom counter?
As a celiac kid in K-12 public schools, I was not as educated as thoroughly as I should’ve been in regard to what celiac disease actually is. As a kid, I just thought gluten got trapped in your small intestine and other nutrients didn’t get absorbed as a result of the gluten being trapped in the small intestine; yet if I ate salads and other fiber and roughage, the gluten would get “scraped off”my small intestinal walls. While the former part of the last sentence is true, the latter is definitely not! This thought process, however, gave me license to continue my cheating ways with gluten throughout my childhood.
A celiac kid has a lot of hurdles to overcome to successfully eat gluten-free. Of course there are the physical environment and the education hurdles of celiac disease. Just as a celiac adult has to watch out for gluten cross-contamination and ingredients, celiac kids also have these same hurdles. Other hurdles are the psychological and the emotional ones for celiac kids. Taking on the grown-up responsibility of managing a gluten-free diet as a celiac kid is a very tall order. A very strong sense of discipline, high self-esteem, and education of what celiac disease is needs to be instilled in the psychological and emotional make up of a celiac kid. In my opinion, I don’t believe I received these mental tools early enough in my childhood. That said it’s never too late to learn these tools and apply them in relation to a gluten-free diet no matter what the age of the celiac person.
As a postscript, I would like to state for the record I do not advocate cheating on a gluten-free diet if you have been diagnosed with celiac disease at any age. In my experience, I was lucky (or unlucky) not to have experienced some of the debilitating symptoms one can have in regard to celiac disease. Sure, I had constipation, diarrhea, and other symptoms, but at that time in my life those celiac disease symptoms didn’t seem serious enough to permanently stop me from ingesting gluten. My most apparent symptom in regard to celiac disease at that time was Dermatitis Herpetiformis (DH). Even that celiac disease symptom wasn’t enough of a deterrent for me to stop ingesting gluten at the time. That said today I’m a healthy, gluten-free celiac disease survivor. I’m thankful for each day I survive gluten-free. My mantra – Gluten-free one day at a time! I'm learning.
Research, educate, and advocate all celiac and gluten-free – and Celiac Disease Awareness for May.
Peace be with you.
Diagnosed with celiac under the age of six years old, Dougie has had a lifetime of learning to live gluten-free. He spent many years on the fringes of gluten-free compliance. Now in his 40’s, Dougie has learned a lot in regard to symptoms, hidden ingredients, and what “not to do” in regard to living with celiac and being gluten-free. He is a regular as GFDougie in the gluten-free Twitter-verse, offering tips, advice, support and encouragement. His blog, Gluten Free Tip also offers successful hints, recipes, and products in regard to celiac disease. Read is full bio here.
Technology is amazing.
And to answer a couple of questions:
1) Is the kitchen at the top of my website my actual kitchen?
Yes it is! Well, in my mind anyway. Got to have something to shoot for, right? My current kitchen is featured in the video below.
2) What kind of camera do I use for my videos?
Camera, shamera. It's my iPhone! I can upload directly to YouTube. Amazing.
3) Why haven't I figured out to turn the phone sideways so that it's oriented on the screen correctly?
Ah, but I have! I just haven't demonstrated my learning. Plus I need to do an experiment to figure out which way to turn it so that I don't do a video all upside down.
4) What editing software do I use?
None! You'll note that they are all expertly done in one take. If I really goof up, I start over. It's sort of the difference between stage and screen. No telling what kind of excitement might unfold in this "live" format!
5) Is this all I do all day?
No! Not yet, anyway. Mostly I go to a day job and then I spend meaningful time with my family on the evenings and weekends! And I work out! But still, I want to do this more.
Thanks for visiting!
Oh, and check out my video tips on how to live happy and gluten free even if you share your space with gluten-eaters.