Monday, March 12, 2012

Eight Weeks Later - The Nutritional Odyssey Continues....

"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
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

Boring Details Medical Update

"If you don't like something, change it. If you can't change it, change your attitude.” ~ Maya Angelou

I wear two pieces of jewelry these days; my engagement ring and this silver cross that Chuck gave me a month after we started dating. I had to take it off for my MRI yesterday and I gave it to him to hold. He took this photo in front of a snowy window in the MRI waiting room. Is it no wonder why I love him so?

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....   ;-)