I have been fielding some questions lately about what on earth is there left for me to eat since I have changed my diet so much. To reiterate, a little over two months ago, I eliminated gluten, dairy, soda (again!), and fast food from my diet. I also started the process of reducing refined sugar, meats and processed foods. I am not looking to become a vegetarian at this point although that might be a wise idea. However I did discover that the term of my "semi vegetarianism" is flexitarian which means someone who eats meat on occasion. The definition of "on occasion" is quite flexible (Ha! Get it??) At the moment I would say that I am eating a serving of meat anywhere from once a day to once every several days. It really depends on if my body is wanting it or not. I am big on listening to my body these lately!
I have also been wanting to eliminate aspartame and all artificial sweeteners but that has been really tough since it appears that I have substituted those for soda at times. It is also difficult because due to my Sjogren's syndrome, I drink TONS of water and seltzer because I require so much fluids. I am not talking six- eight glasses of water here. More like eight glasses every two hours while I am awake.
However I watched an incredible movie online yesterday called Hungry For Change which talked about a lot of issues regarding the food we put in our bodies, including the hazards of sugar, processed foods, chemicals, etc. To say it was incredibly informative and interesting would be an understatement. However one of the key issues that jumped out at me was someone stating how these artificial sweeteners have been linked to symptoms similar to multiple sclerosis and other neurological issues. Call it hype, call it whatever you want. If you have been following my blog, you know that I am struggling in a major way with some neurological issues right now. So if there is even the slightest possibility that I can even MAYBE get some relief from those issues and avoid medication, I am all for it. So I am done with artificial sweeteners. Period.
Anyways, I digress. So back to what I eat. As I have mentioned in former blog entries, the change has not been easy as I have been such a picky eater my whole life. I even wrote a blog entry about it when I first started blogging called: No Tomatoes, Onions, or Peppers Please. It was ridiculous how limited my food palate was.
However when undertaking these new dietary changes, I knew I was going to have to step outside my comfort zone more than ever and find ways to incorporate whole, non-processed, healthy foods into my diet. The process actually started last year when I stumbled upon a local blogger named Rick Lebrecque who who was writing a blog called My Big Fat Life. He had lost a tremendous amount of weight and gotten healthier by eating whole foods and in particular with the use of green smoothies; which will be a different blog entry hopefully soon!
I have been finding over the past two months that the more healthy foods I consume, the more I WANT to try new foods. The more I want to cook and try more recipes. The more I stay away from the processed and crappy foods, the LESS I crave them. So here is a list of foods that I have added to my diet within the past few months that I have never eaten before and that I actually enjoy.
* Vegetables. I used to eat cucumbers, celery, and radishes; that was it. Now I have added carrots, tomatoes (in really small pieces!), kale, spinach, collard greens, dandelion greens, mustard greens, all types of lettuce, mushrooms, jicama, onions, peas, green beans, green onions, broccoli sprouts, and asparagus. Veggies are a tough area for me so I am still working on adding to the list!
* Beans: red kidney beans, black-eyed peas (are they a bean? Not sure.), black beans, lentils, chickpeas. Still expanding on this area as well.
* Fruit: I eat almost all fruits; this has been the easiest for me as I grew up loving fruit but I have since added, and actually found a love for, blueberries, raspberries, kiwi, currants, and goji berries.
* Nuts: The only nut I ever ate until two months ago was peanuts...no lie. I wouldn't even eat a brownie before with nuts in it. I forced myself to try them because I know they were such nutritional powerhouses (in appropriate amounts). I am now a lover of cashews, walnuts, sunflower seeds, pepitas, and pecans. Amazing!
* Quinoa: I could write a whole blog entry on quinoa and I may! When I first tried it all I could think of was how bland it was. My bad. You can do a million and one things with quinoa and the nutritional value it packs is ridiculous. I love it.
*Other food items that may be new for me or I am eating them in a different way, such as the pizza (I realize some of these foods are processed and they are all gluten/dairy-free):
Unsweetened soy milk
Hummus (I now make my own and it is fantastic!)
Coconut milk yogurt
Dark (85%) chocolate
Gluten and dairy-free tortilla or sweet potato chips
Pizza (make my own)
Haddock and flounder
Black sesame seeds
Taco salads (make my own)
Gluten-free pastas and breads: I have dramatically cut back on these and only use them as a treat as they are they are very processed and high in calories, fat, etc.
I know there is a lot more to this list but this is what comes to my head at 7:30 in the morning. I am hoping that it is useful to anyone who is trying to change their diet. I also hope it goes to show that change IS possible and sometimes it is all about adding one new healthy food at a time.
Have a great day!
Sunday, March 18, 2012
Smell the ocean.
Touch the sand.
Taste the salt from the air.
Watch the seagulls take flight.
Hear the crashing of the waves.
I am at peace.
I am home.
For approximately ten weeks, I have been in a vicious cycle of a health crisis, medical tests, needles, doctor appointments, pain, physical therapy, stress, uncertainty, and fear. My days have been a regimented schedule with minimal flexibility, time, or energy for anything else besides trying to get done what needs to be done and get my body to a better place. Having a chronic illness (Sjogren's syndrome) is tough in general, but adding the events of the past ten weeks have really changed how I have had to function day to day and even hour to hour. Part of the issue has been related to recovering from Guillain-Barre and blood clots in my lungs. Another part of the issue has been trying to manage the severe side effects of the required steroids which are being tried in an attempt to get my neurological symptoms under control. Priorities have changed. My days now consist of making sure the essentials are taken care of. Showering, preparing meals, getting to appointments, caring for Molly, medications, and physical therapy.
And honestly, the whole ordeal has not been fun. My ability to socialize, leave the house, or even enjoy my usual activities has diminished dramatically. Before yesterday, I can honestly say I had two fun, "nonessential" outings in ten weeks; I went to a play that Chuck was in and a birthday party for my aunt. Both were events that I felt like I absolutely could not miss.
This past week found me at the rheumatologist's office begging to cut back on the steroids. They have helped tremendously with my Sjogren's syndrome symptoms and my strength has improved quite a bit from the Guillain-Barre. However the issues that I am still having are unexplained upper body tremors and headaches. The kicker is this could be a neurological issue OR caused by the steroids themselves as my other neurological symptoms have improved. Nobody knows for sure.
I told the doctor how my body feels like I have been taken over by an alien because of the steroids and I didn't think that I could tolerate much more than the four IV infusions and the 40mg per day of prednisone I had in my system. I am just not the same person, physically or mentally because of the medication and at this point it is too confusing to figure out if the problem is more the illness or the treatment. As far as the rheumatologist was concerned, we could start weaning the steroids. However she then also told me that because of the concern with the tremors and head pain, the issue and decision was going to be in the hands of the neurologist whom I see this week, who may even decide to do more steroids.
The possibility that not only may I not be able to wean the oral steroids but may also require more IV steroids overwhelmed me.
I think there comes a point when you are dealing with health issues that you have to stop and think about more than the physical consequences of your illness. Now I know that I will have the final say as to what happens with my medications this week, but I was overwhelmed by more than that. It had more to do with the fact that I needed a break from it all; even if just for a day. I needed to have some fun. I needed to get away; no matter what.
See, when you are battling a medical crisis, you have to consider the quality of life that you are leading. And the toll that your illness is taking not only on you, but your partner and relationships as well. In the past ten weeks, Chuck and I have both been in constant stress and illness mode. A lot more than most newly engaged couples have to contend with. Yes, we are in love and yes, of course we are going to support each other during difficult times. But, we are still human. A person can only take so much. We needed quality fun time together that did not involve work, illness, commitments, or other people. I knew this would mean pushing myself physically further than I should, but again, I felt like I had lost so much of my (our) quality of life recently that it seemed like the right thing to do.
Yesterday was that day.
I love the New England coast and everything having to do with beaches, lighthouses, fishing boats, and such. Being on the shore is truly nurturing for my soul and it has been for some time. Chuck and I had made plans last weekend to try and get to a beach somewhere and despite our best plans, I was not in an adequate place health wise to manage that trip. I was beyond disappointed.
But after a week of heavy duty physical therapy, staying strict on my diet, and an amazing acupuncture session Friday, I woke up yesterday morning with the thought that maybe it was the day we could actually do something fun. Chuck asked me what I wanted to do and I said my only requirements were that it was outdoors, I got to do some walking in order to keep increasing my endurance, could bring Molly, and that I didn't have to cook. So I packed up my medications, especially the pain ones, a supply of water, and my pooch. Everything else was fly by the seat of our pants; although I strongly suspect that Chuck had somewhat of an idea of what direction he was driving in!
We ended up driving to the North Shore of Massachusetts and visiting the towns of Rockport and Gloucester. It was approximately a two hour drive each way. We didn't have much of a clue where anything was but that was half the fun of it. Exploring; like we used to. We ended up in downtown Rockport which is a beautiful little coastal town littered with unique little shops and a great place to go walking. Very dog friendly and very physically friendly for me as there were an overwhelming amount of places to sit and rest. At one point, we found an overlook where you could sit on the rocks and watch the small waves hit the rocks below. It touched all of my senses.
While Chuck was taking some photographs, Molly and I headed over to the edge of the overlook and found a relatively flat rock to sit on and look down at the ocean below. As I was sitting there on that rock by myself, I closed my eyes and literally, peace filled my body. The tears flowed. Because in those moments of smelling the ocean and hearing the waves, I felt like Christine again.
Not the sick Christine with her life being governed by the medical system and a body that has betrayed her, but the one who has a future and so many dreams to fulfill. The one who remembers what it is like to be able to leave the house for the day to do something enjoyable or walk around holding her fiance's hand like any other tourist. Or to be able to even think about a future beyond doctor visits and tests. The Christine that will get married. The one that will someday go to Ireland. The one that will publish a book.
And the rest of the day went along like that. We found a beach in Gloucester to explore and let Molly loose to have some fun. It was so enjoyable just to see her enjoy herself. She hasn't been able to get out for walks on a regular basis like she used to last year and let me tell you, she made up for it on the beach! There were plenty of other dogs to run around and play with. It was only her second time at the beach and she was excited. She ventured to where the ocean met the sand and bravely stepped into the cold water. She took a drink and her reaction from realizing that it was salt water and not the regular water like she drinks from her bowl was priceless! Never underestimate the power of laughter in healing.
It was truly a glorious and healing day.
So did I wake up during the night with more pain after our adventure? Yes. Have I spent most of today feeling like I was hit by a train? Absolutely. But do I feel emotionally and mentally stronger and more connected to my partner? No doubt. At this point, it was a small price to pay.
And best part of all this?
I didn't even have to cook.
|Best seafood! I actually had gluten AND dairy-free fish and chips! What a find!|
Photos: Courtesy of Chuck Myers
Monday, March 12, 2012
"Let food be thy medicine, thy medicine shall be thy food." ~ Hippocrates
Eight weeks later I am still following a nutrition plan that I began January 18, 2012. A lot has happened to me in those eight weeks, both in terms of the eating plan and in regards to my Sjogren's syndrome. The Sjogren's syndrome, an autoimmune disorder, has been the catalyst for drastically changing how I eat in the first place.
I have written two previous blog entries on the topic which can be found by following these two links so hopefully I am not repeating myself too much:
Nutritional Healing Update
I started eating this way after hours and days of research in a desperate attempt to try and contribute to controlling my symptoms as my Sjogren's symptoms were worsening relatively rapidly. I have a history of lousy nutrition and being overweight and since my first autoimmune symptoms in December 2007, not one physician has suggested that I do any dietary changes in an attempt to help alleviate my symptoms. Of course nutrition research is not funded because it is not profitable so there is a scant amount of true research information out in the medical community about the positive effects of diet on autoimmune disorders. However I read enough patient stories and experiences to know it was something I had to try and if it didn't help my Sjogren's, it sure as heck was going to help the rest of me.
People have been asking me if I have noticed an improvement in my Sjogren's symptoms with this new way of eating which is gluten and dairy-fee, semi vegetarian, reduced sugar, reduced processed foods, no fast food, whole foods, no soda or caffeine. The answer is:
I cannot say with any certainty.
The same time I started my eating plan, I started on large doses of steroids for neurological issues, was diagnosed with two blood clots in my lungs, and received a diagnosis of another autoimmune disorder called Guillain-Barre. My body has been a huge deposit for steroids, blood thinners, and multiple other medications I am not accustomed to taking. I think that as I wean off the steroids and recover fully from the Guillain-Barre (which I absolutely will), the answer to this question will be more clear.
What I can say is that until my last steroid infusion, I was tolerating some of the side effects better than usual, my periods have been more tolerable, cravings for high fat and sugar laden foods have diminished dramatically. I feel much more in control, with a few exceptions, of my eating. Until my last infusion last week, which was the fourth in six weeks, and in addition to oral steroids everyday at home, I had lost weight. This last infusion killed me in terms of fluid retention, gaining some weight (which has already started to come off), drastic mood swings, heart issues, etc. In regards to non autoimmune issues, my lipid profile (which includes cholesterol, LDL, HDL) is the best it has ever been; very close to perfectly normal and my blood sugar is perfect. Very important since I come from a family history of heart disease and diabetes.
So time will tell. After doing some research, I also learned that it can take several months to notice a positive effect and I am in this for the long haul.
I can honestly say that to the best of my knowledge, I have been on plan with the exception of one time and that demonstrated some proof that I am on to something. After a horrendous appointment with my neurologist last month, I was driving home by myself and was very upset. So how did I deal with that? Burger King drive through of course. The whole works: double cheeseburger, fries, and a Coke. I had not had any Sjogren's related joint pain in quite a while because of the steroids and sure enough, the next day I woke up so stiff and arthritic that I actually questioned if they gave me the right medicine, steroids, at my last infusion a few days prior. Of course they did. It was the food. I am certain of it.
I wish I could say it has been an easy journey but it has been challenging at times. The learning process, shopping more often, cooking all the time and such really can take a toll on me when I am not physically feeling well; especially with all the neurological issues I have had. Not to mention the physical therapy, doctor's appointments, etc. However this has just meant that I have to ask for help when I am REALLY sick and that I have to plan and prioritize when I am able to do more for myself. For example, yesterday I spent time going through cookbooks, planning meals, and making a shopping list so that I can decrease my trips to the store. I only have so much energy to use in my day and it is limited lately but the food part HAS to be a priority.
My other challenge has been eating out and eating at other people's homes. Because in reality, the rest of the world is not eating exactly like me although for the life of me, I cannot imagine why. Eating out has gotten easier and I have found a few restaurants that are very accommodating to my needs. They include places Red Robin, Pizzeria Unos, The Roadhouse, which is a local joint in my town, and a slew of independently owned restaurants in some nearby towns. I am finding that gluten-free is not as big a deal as finding a place that provides gluten AND dairy free options. I am hoping that as awareness of food allergies catches on more, there will be more options available so I can visit some of my old favorite haunts such as Kristina's and the Hanger (both local places as well) once in a while.
My experience with eating at other people's homes and social functions has been limited because of my health lately but I was at a family function this past weekend that was challenging, VERY challenging. But I did it. I knew there was going to be pizza, birthday cake, etc. So I brought my own supper and a low sugar, gluten/dairy-free dessert and thought how awesome it was that I was so prepared.
Yeah, not so much.
Pizza is my favorite food in the world and the aroma of the pepperoni soaked pie almost did me in. Plus I was all messed up from the steroids. I wanted to dive into that box head first or at the very least, take it and run like hell. So one might ask, why deprive yourself? What is the big deal about a slice or two of pizza? The big deal is that gluten and dairy can do damage to your intestines that you may not even know about and set you back god knows how long. It is not like a traditional diet where you give in to your craving and move on, compensating for it later. At least not that I know of and I wasn't willing to risk all that hard work. I left that evening pizza free. And you can bet I will be making an awesome gluten and dairy-free pizza for Chuck and I sometime this week.
I have also found it very helpful to be prepared for travel such as for doctor appointments and long days. I bought a lunch box, a bunch of food containers, ice packs, etc. When you have what you can eat right at your disposal, it makes a huge difference when you come across a hospital coffee shop that literally only has a bag of peanuts and a bruised apple to choose from while you wait an extra hour to see your doctor!
So these have been some of the challenges in my new found way of eating. There have been a lot of blessings though as well. To start with, I have found a love of cooking that I never knew I had. And to be honest, I am kind of good at it! I am not the most creative cook so I rely a lot on some really great cookbooks I have found. However slowly but surely, I am learning to make some things without a recipe and discovering a culinary world I never knew existed. It makes me feel good to create something with my own hands that is healthy and nutritious for my body. Yes, there are occasions that I resort to a gluten/dairy-free processed meal that some factory made for me but I feel no guilt about that because it is so infrequent.
I also enjoy the challenge of creating dishes and meals that are not only on plan, but also taste fantastic. I appreciate food now more than ever because I actually taste the FOOD itself; imagine that! I also find that I am starting to look forward to certain healthy foods such as kale, black eyed peas, and quinoa, rather that Chef Boyardee ravioli or fast food.
I never want to be one of those people who runs around saying how their lifestyle is the only way to go; whether it be in regards to food, exercise, or anything else. But I will continue to let people know how it is going and share information. Not just because I happen to have this autoimmune disorder, but because the fact is, the typical American diet is lethal and the incidence of obesity and weight related health issues in this country is off the charts. We are so obsessed with losing weight that we don't stop to think about being healthy. That should be the goal.
Sometimes all it takes is a small change. Eat a vegetable every day. Pass on the fried appetizer. I started this way of eating plan eight weeks ago but reality is, the process started for me a year ago when I drank my first green smoothie in an effort to get more greens into my body.
A whole year ago.
Who knows where I, or you, can be a year from now....
Photos: Courtesy of Google Images
Thursday, March 1, 2012
"If you don't like something, change it. If you can't change it, change your attitude.” ~ Maya Angelou
I am a firm believer that the only way through hard times, pain, and suffering is through it. Not around it. So when this week approached with its nine plus appointments, multiple medical tests, and constant hourly changes in my schedule, medications, and therapy, I made a firm decision that I was just going through it. I knew it was not going to be easy, but my approach was one hour, maybe even one minute, at a time.
So far it has been an insanely busy week. It is a huge struggle when you feel like hell physically to get yourself showered, dressed, and prepared for one appointment after another; meanwhile trying to keep track of your other responsibilities such as who's going to care for your dog, how you're going to get places, getting the times right, eating, resting, etc. Throw in a few inches of snow for a messy commute and well, you get the idea....
So here's the deal. I started physical therapy on Monday and will be going twice a week for a few weeks at least to start with. I was disappointed because my therapist was pretty focused on my lower extremities which at this point, are not the biggest problem; my upper extremities are. I am not 100% confident in his experience but that could be because he looks like he is fifteen to me. I will try and reserve my judgement until after another session or two and then if I feel he is not the right therapist for me, I will request someone else. The evaluation itself exhausted me and I am not sorry that I cancelled for today. I have exercises for home meanwhile.
My blood clotting labs are down (they should be higher) probably due to being back to eating green veggies again like I normally do. So they upped my blood thinner dose but now I am on a regular eating routine so hopefully this will straighten out at my next blood draw. At least no more injections. I still cannot wash my belly without discomfort because of the nasty large bruises. I am wearing my own pants now though. Elastic waistbands only but at least they are not Chuck's!
My appointment with my pulmonologist was almost a three hour ordeal on Tuesday as I had to have breathing tests done and then he got called into an emergency procedure so he was an hour and a half behind. I think I handled that very well to be honest. I know that he also runs the intensive care unit at the local hospital and despite his best scheduling, sometimes these things happen. It is a small price to pay for seeing such a fantastic doctor. He truly looked stunned when I explained all the things that had happened since my last appointment. It was kind of funny to see a professional's reaction to all of the recent events.
Because of all the steroids I have had, I rocked my breathing tests. Like textbook perfect, despite the blood clots in my lungs. While I am still on the steroids, I get to come off one of my inhalers, at least for now. Yay me! We reviewed the CT scan and I got to see my little blood clots live and up close. It was a touching moment.
OK, not really.
He thinks because I had another blood clot in my leg years ago, it does not look good for me getting off the blood thinners (Coumadin) in this lifetime but we will let one of my newest specialists (the hematologist) decide that when I see him next month.
The concern now is that despite my asking about this in the hospital, there was not an ultrasound performed of both my legs to see if I am regularly throwing blood clots or if this was just related to being immobile from the Guillain-Barre plus having a clotting disorder plus the possibility of the Sjogren's playing a role. So we are doing that this Friday. I asked him if we really wanted to go looking for more trouble. He laughed and thought I was joking. I was not. But I know its important so off I went to acupuncture for the first time in a bit to see if it would help with my stress but unfortunately, a phone call from my long term disability company an hour after I got home from acupuncture pretty much negated any positive effects I may have had from that session.
Yesterday found Chuck and I in Hartford with my neurologist. It started off pretty bad because I had been so sick with these awful headaches in the back of my head; the ones which landed me in the ER last Friday. The drive down made me nauseous and I was having more weakness in my legs and arms as I was so sleep deprived. Apparently Guillain-Barre symptoms can wax and wane for a while, especially if you are sleep deprived. Neuro doc did an EMG which is not a day at the park but tolerable. I'll spare too many of the details. After a series of nerve conduction shocks and a round of sticking needles in my muscle which lasted about a half hour or so, she said the test looked normal. What this means is that it did not show any permanent damage that she could find but I do have (had) Guillain-Barre. A positive test result would have been helpful for her to see more what is going on but a negative one doesn't disprove anything; if that makes sense. I say any day you have a negative test is fine by me.
Had an MRI of my cervical spine that afternoon which the hospital graciously moved up from late afternoon due to the inclimate weather and us being over an hour from home. That was the test I was least worried about from a pain standpoint and it was awful. Because I have been having neck tremors, they were having a hard time getting still pictures and told me I couldn't swallow or deep breath while the scanner was going. The test took an hour with minimal breaks. Ugh. I do deep breathing to help manage my claustrophobia in the MRI machine which then I couldn't do but I have to say I did pretty good. Until about ten minutes or so before the test ended. I had been laying perfectly still on my back, on a head that was killing me in the back, and the pain was more than I could bear. I just let the tears come without moving my damn neck; but it was pretty painful.
Luckily, the neurologist and I had discussed these sudden headaches and she put me on a pain medicine that is specifically for headaches and shouldn't keep me wide awake all night like the one I was taking. I had it filled at the hospital pharmacy so was able to take a dose right after the MRI before Chuck drove us home. She is not sure what is causing these headaches. I have had some in the past with Sjogren's flare ups but very different from this. The concern is the neck and arm tremors that I am still having which are better but still there. Although she think the tremors may be Guillan-Barre related, she does not think the headaches are. It may be as simple as stressed induced migraine or tension headaches which I guess can be pretty bad. They did start right after I found out about the blood clot and Guillain-Barre diagnoses so who knows. She also thinks the lack of sleep for the past two months while being on steroids could be a trigger as well. The plan is to get MRI results to me by tomorrow at the latest and see if this new headache medicine is helping which so far, it has helped quite a bit. It also knocks me on my ass. No complaints there; slept four straight hours last night. That was a miracle.
Unfortunately, the neurologist also feels that I should have that last steroid infusion because of all the neurological issues I have had so we wandered over to my rheumatologist's office and left a message about setting that up and I am expecting to hear about that today or tomorrow as well. And I got a follow up appointment with my rheumatologist finally which is no small feat whatsoever. So much to think about. So many more appointments.
So that's the scoop so far. I still shake like a leaf sometimes, have nasty headaches, and am exhausted all the time. Today my body is just yelling "enough" and since I cancelled PT, I think I am going to just keep things as low key as possible and do some more healing. My body still feels so broken. Maybe some cooking. Definitely some snuggling with the pooch. And plan my next round of appointments for next week.
I have been really blessed this week with people helping us out with a few meals, checking in on me, giving me a ride when I need it (although I can get to Noho by myself now!), and especially in regards to watching Molly and getting her some exercise. Trust me, you never know how much those little things can add up and make crap like this so much easier. I have also been able to stay on my eating plan despite this crazy schedule and stress and not only am I proud of myself, but of the people who have supported me in that endeavor. I will be a much healthier person because of it, one way or another...someday!
Speaking of someday, don't worry...we haven't forgotten that we DID get engaged and that there will be a wedding. You just never know what kind of plans get made in waiting rooms.... ;-)