For Everything There is a Season

"In order to write about life, first you must live it." ~ Ernest Hemingway

Category: autoimmune disease (Page 11 of 19)

Dry Mouth

July 8, 2013 / / 8 Comments

I was recently asked by a representative of Nuvora, Inc. if I would be willing to write a blog entry about dry mouth and also review one of their products. Just for the record, I have not been financially compensated (unfortunately!) in any way. This is an unbiased review. What is interesting is that in three years of writing this blog, I have never written about my Sjögren’s related dry mouth. I am not sure exactly the reason for that except that maybe compared to the rest of my autoimmune symptoms, especially the ones that affect various organs, it doesn’t seem like as much of a big deal.

But dry mouth is a big deal. The fact of the matter is that my dry mouth was not one of my first symptoms and it took some time to develop but when it did, it came on with a vengeance. I am very lucky to have inherited my dad’s excellent teeth and to date, I think I may have developed only one cavity since I started with the Sjögren’s symptoms in early 2008. I do work very hard at keeping it this way and I have an oral care regime that if the average person knew about it, their jaw would drop. That being said, a lot of us with Sjögren’s have meticulous oral care and yet we still run into terrible complications at the dentist. Dry mouth is not just a comfort issue, it is a quality of life issue.

Dry mouth is experienced by twenty-five percent of people in the United States on a regular basis. It occurs more frequently in women and the incidence of it increases with age. The medical term for dry mouth is xerostomia and xerostomia is caused by a lack of saliva production. The problem is that this saliva is extremely important as its function is important in helping us to eat and swallow. Saliva also controls bacteria which kills germs. The result of not enough saliva include tooth decay, gingivitis, and other oral infections.

Dry mouth can be caused by many factors including medical conditions and as a side effect from certain medications. The medications that can cause dry mouth include antacids, decongestants, antihistamines, antidepressants and diuretics. The medical conditions that cause dry mouth include lupus and Sjögren’s, as well as many other autoimmune disorders. Also, people with diabetes, AIDS, and those undergoing radiation treatment for head and neck cancers can be affected as well.

Proper dental hygiene is critical for those of us with dry mouth. Brushing two to three times a day, regular flossing, the use of a water pic, and fluoride treatments are some good measures we can employ to battle dry mouth. It is also advisable to avoid coffee, tobacco, and mouthwash containing alcohol as all of these can increase mouth dryness. But for many people, these measure are not enough. We can suck on all the sugar-free hard candy and chew all the sugar-free chewing gum in the world to no avail.

Since I started battling dry mouth, I have been through many products on the market: all of the Biotene products, OraMoist, and XyliMelts. I do use Biotene toothpaste in the morning (I use a prescription fluoride toothpaste at night) as well as their mouthwash with some good results. OraMoist patches were a bad experiment for me and XyliMelts I currently use on many nights and they are helpful.

The product I was asked to review is called Salese. According to Bolko Stolberg, Executive Vice President of Nuvora, Inc., Salese is “a fast acting and long-lasting solution for people with dry mouth whether you get occasional dry mouth or whether it is something you deal with on a regular basis. Our unique delivery system provides lasting moisture for an hour or longer while also helping to improve the overall health of your mouth, leaving you with fresh breath and a clean feel.” The Salese lozenge uses a proprietary Sustained Release technology which is supposed to last anywhere from thirty minutes to two hours. This technology is designed to achieve unprecedented prolonged activity and efficacy for ingredients delivered in the oral cavity.

OK, that’s great but a lot of products advertised towards people with dry mouth make claims that just don’t hold up when you actually use the product. I won’t name any names. The folks at Nuvora, Inc. sent me two boxes of samples. Each box contains twelve lozenges. I obviously didn’t pay for them but according to Walgreen and Amazon.com, the price is $6.99 for the box of twelve.

I went to try one and then I realized I had a huge problem: they sent me a box of peppermint and a box of wintergreen. Anybody who knows me well knows that I have a HUGE aversion to anything with mint in it, except for those girl scout cookies. And I am not kidding. I don’t know where this aversion came from but I do not even use mint toothpaste and I have never chewed minty like gum, and that includes peppermint and wintergreen.

However I decided to go for it and I tried the peppermint lozenge twice. I will admit, the taste wasn’t as bad as I thought and my guess is that if you like mint, you will love these. The texture of the lozenge is very sponge-like, almost like a gummy bear. Unlike XyliMelts, they do not adhere to the roof of your mouth or gum line and as a singer, that is a feature I miss with the Salese.

I got through forty-five minutes using the lozenge the first time and an hour the second time. I had to give up because of my aversion with the mint thing but I have to tell you, I was impressed with how long the lozenge lasted. It also didn’t have a chalky taste like some other products for dry mouth. Considering what was left of the lozenge when I ended my trial use of it, I would not be surprised if it lasted a total of two to three hours, at least. Few things make me as happy as finding out that a product is as good as its manufacturer claims it is. Also, Salese is a gluten-free, dairy-free, and vegan product. You all know how thrilled I am to hear that!

I did some poking around on Amazon and by reading reviews there, I saw that most other people were as satisfied with Salese as I was. I also found out that there is a lemon flavor which made me very happy. Since there is no Walgreens around us, I ordered it and paid the extra $4.50 in shipping to give this flavor a try. If any of you want what is left of my samples, e-mail me your name and address and I will ship it to you. You know, that whole paying it forward thing and all!

Embracing Prednisone

June 24, 2013 / / 5 Comments

I am back on prednisone. There, I said it. Anyone who follows my blog knows how I feel about prednisone. It is a miracle drug and a drug from hell all mixed into one small white pill. Over the past four years or so, I have been on it more than I have been off it. However since I started seeing an integrative medicine practitioner last November, I was able to wean off prednisone at the end of January and have been off it ever since. Folks, that is the longest I have ever been off of it; FIVE whole months!

Now, I  saw my rheumatologist in April which was about a month before my wedding. Because of the increase in joint pain, she wanted me back on 10mg of prednisone or Arava. It was my choice based on the side effects. I gave it a lot of thought, gave it another week, and decided to hold off. And no, I never called my doctor. I am not an advocate of going against doctor advice so please don’t leave me comments saying I give bad advice. People have sent me those types of comments and e-mails. I did what I thought was best for me. Maybe I will be right. Maybe I will be wrong. I followed up with the integrative medicine doctor, I clamped down on my diet, and my pain got better. I made it through both days of my wedding very successfully.

After the wedding, it looked to others I was doing well and I kind of was, to a point. But I was having issues. I think what was really happening was because I was feeling better, I was more active which then caused my symptoms to flare. Also mentally, I am coping MUCH better with my symptoms, especially my pain. And that makes a big difference. So whereas before I would go back on prednisone, I really tried to tough it out. I spoke with my integrative medicine practitioner again because the amino acid supplement dose she had me on was doing wacky things to my body and I had to come off it completely to make sure that was the issue. My hormones had gone bonkers and she told me that this could happen. The mood swings were enough to make me stop the amino acids temporarily at least. However she did add in an anti-inflammatory supplement called boswellia and then told me it was going to take about a month to work.

Shortly after this appointment, I realized that things were still getting worse. Now “worse” for me is all relative. Even though I was doing “worse”, I was still functioning much better than last year. However my fatigue had come back with a vengeance, I constantly had pain, tenderness, and swelling in my glands around my face, less exercise tolerance in terms of joint pain, and the issues with my bladder, which I still have to see a urologist for, intensified. My option was to call several different specialists about each issue or just go back on a course of steroids to see what improved and what did not.

Luckily, my rheumatologist is flexible about my dosing of prednisone and when I take it. She makes suggestions and also relies on me to figure out what I need depending on what is going on at the time. That is hard for me sometimes. While I appreciate the flexibility, I am stubborn about being on traditional medications because I know that most of the time, the side effects can be just as bad as the Sjogren’s symptoms. I have a lot of arguments with myself about the prednisone. I still feel very strongly that it is NOT the answer as a constant modality of treatment for Sjogren’s syndrome because it suppresses your immune system. It does not treat the cause of the illness. That being said, I think that when you are in an acute situation, there is a definite place for it. The problem for me is trying to decide when I am in an acute phase. Having a serious asthma flare or joint pain so bad I cannot walk is acute but I also think that maybe when there are several less critical autoimmune issues going on at once, my body is telling me that it desperately needs to bring the inflammation down.

I struggled with the decision to go back on prednisone because I felt like I had come so far with my alternative treatment. I also do not want to go back on the medication regularly. But then I realized that enough was enough. I needed to do something to get me through this period of time until the integrative medicine treatment plan was more effective. I was also concerned not just about my pain levels, which for the most part I was coping with, but about the possibility of what the disease and inflammation was doing to my organs. I decided to start myself on 20mg and do a one week course by starting at 20mg and tapering down every two days until I reached 5mg and then stop. Typically prednisone needs to be weaned down slowly but this is only if you are taking it for two weeks or more. I have done steroid tapers like this before for my asthma and also for severe allergy issues.

Today is Day Four and I am so grateful that I put my negative feelings about prednisone aside to try this course of treatment. I have never started at this particular dose or done the tapering exactly in this fashion. The 20mg has been enough to settle things down quite a bit but not enough to send me bouncing off the walls in a constant mood swing. I am still sleeping well and although I am a little hyper, I can sit still and rest when I need to. I am not even sure I am hyper as much as I am just feeling normal and like I have enough energy to get through the day. This has by far been my best experience with prednisone. Until I started this week course of prednisone, I did not fully appreciate how bad I was feeling. I was getting through it because my mental state was in such a good place. The gland swelling and pain is almost gone, my joints, especially my shoulders, are dramatically better, and I am not in agony when I go to the bathroom. I don’t know what will happen when I come off in a few days but I am hoping for the best. Because if the best happens, then I have a new way to use prednisone for when things get really tough and unbearable. Or for when I go on our honeymoon to Disneyworld in September.

Now if I go through this week’s treatment and things get bad again, I will have to discuss this with my integrative medicine practitioner and my rheumatologist. No matter what, I still have to follow up with the urologist. But meanwhile, I have helpful information to pass on to him about the prednisone helping that issue.

I guess what this current run with prednisone is teaching me is that my medical treatment does not have to be all black and white. It doesn’t have to be the doctor’s way or my way; the rheumatologist’s way versus the integrative medicine practitioner’s way, and it doesn’t have to by high doses of prednisone versus nothing at all. It’s about listening to my body and trusting myself. It’s about trying to combine the best of what integrative medicine and traditional western medicine has to offer while aiming for the one most important goal: to get my body to a level of functioning that is sustainable and tolerable to me as an acceptable quality of life. I know I will never not have Sjogren’s; it will never leave me. But meanwhile, I will continue to do my best to optimize my health and give myself the best life possible.

Yoga and Me

June 21, 2013 / / 0 Comments

Sometime in early May I started taking yoga classes at my gym. I had been wanting to try the classes for quite a while, for almost a year, but never had the guts to get myself there. I had taken a few classes about ten years ago but became so frustrated with it that after three classes, I stopped going. I think my frustration was with the fact that I couldn’t do most of the poses that were demonstrated. I felt awkward and fat. There was nothing peaceful or relaxing about that for me.

I decided several weeks before my wedding that it would be a good time to try yoga again because from what I had learned, it could really help with stress management. And I was trying to stay as calm and collected before the wedding as possible. Especially because stress exacerbates autoimmune symptoms. I was still self conscious about trying it because in my delusional mind, yoga was for fit people, not someone who at one point was seventy pounds heavier, still overweight, and had the joints of an eighty year old. However the gym I go to has several different levels of yoga classes that are included in my membership fee. I figured that I had nothing to lose if I tried yoga again; except for maybe my pride.

The first class I tried was called Yoga Fusion and was a combination of yoga and Pilates. I thought this was a logical place to start because I had been doing Pilates classes whenever my body could tolerate it and I really enjoyed Pilates. I was wrong. Yoga and Pilates in the same class is very hard, especially when you do not have a good grasp of the concept of yoga to being with.

So I tried a different class called Gentle Yoga. This particular class is offered at my gym several times a week. Currently I attend classes with two different instructors and both of them are fantastic. They are patient, helpful and never once have they made me feel like I don’t belong there. I accept their correction in my poses without hesitation and every week, I learn something new.

Gentle yoga was the right choice for me because now, I am hooked on yoga. Typically, in one of the two classes I attend, I am the youngest person in the room. At first, part of me wished I could do a more advanced class and not feel like my body was at least thirty years older than it actually is. However this is one of the lessons and gifts that yoga has given me: it is helping me to fall in love with my body and to have more of an appreciation of what it CAN do. And realistically, my body cannot do more yoga than a gentle class. Even the gentle class is very tough for me at times because a lot of the postures require me to bear a lot of weight on my most troublesome joints, including my fingers, wrists, and shoulders.

But I keep going. This is still relatively new to me and I am hoping that as time passes, my joints and muscles will become more accustomed to what I am trying to do with them. Typically, even when I go to class in pain, I leave in much less pain. The problem is about 12-24 hours later when everything tightens up and my joints feel the effect of all that weight bearing. However I agree with the philosophy that consistent exercise is more beneficial than harmful to my joints, so I keep plugging away at it.

I also find yoga difficult at times because it is hard for me to coordinate the breathing aspect of yoga with learning and performing the postures. That being said, it is well worth the effort. I have noticed a definite improvement in my overall well being since starting yoga. I have also noticed that on the days when I go to class, I have more energy than I typically do. I cannot explain it or do it justice but yoga appears to give me a sense of serenity and calm that I very much need in my life. When I am sitting there breathing and holding a posture, I am not thinking about the things that my body cannot do. I am not thinking that I feel fat or that I don’t look like a stereotypical yoga groupie. Most of the time, I am just thinking about how the hell I am going to keep that posture up before I collapse or topple over. And yes, that has happened!

But seriously, yoga is a powerful form of exercise that is helping me to be more accepting of my body. I talk a good talk about how we should all be accepting of our bodies and I do firmly believe that. But I do not always practice what I preach when it comes time to look at myself in the mirror. Somehow, yoga has helped me to look in the mirror and now sometimes be able to look at the positive aspects facing back at me rather than looking at my body with contempt and disdain. I see the upper arm muscles that have toned up. I see muscle definition in my legs as they appear smaller than a few months ago. Most importantly, I feel more at peace with who I am as well as who I am becoming.

Continuing Down The Road Of Integrative Medicine

May 3, 2013 / / 3 Comments

So today is my birthday and no, this is not a post about how great birthdays are; even though they are great! Rather, I am giving myself the birthday gift of writing a quick blog about something important to me and maybe to you too. With our wedding coming up in fifteen days, my writing frequency has taken a sharp decline lately, hence why it is important that I hunker down and get this written so that I can then take my pooch out and enjoy this beautiful day.

As I wrote in a previous blog Going Down The Road Of Integrative Medicine, since November, I have been going to a wellness center in a nearby town to see an integrative medicine doctor in the hopes that they can help resolve some of my autoimmune issues. Because let’s be honest, I have been treated for Sjogren’s syndrome for over five years now by traditional doctors and I haven’t really gotten too far. Actually last year, I would say that in many aspects I even got worse. I have some very excellent specialists who know what they are doing but I am beginning to learn that chronic illness, especially autoimmune disorders, are extremely difficult to manage and treat. When they are treated, it usually means with potent and caustic medications, some of which can eventually kill you. The medications used treat the symptoms, not the cause of the illness.

Don’t get me wrong, I am not abandoning traditional western medicine. I feel strongly that there is a place for medications like steroids and stomach acid blocking medications (PPI’s). However I also feel strongly that staying on these medications indefinitely is not the answer to managing my Sjogren’s. For someone else, it may be and that is OK. But there came a point last year where I looked at my medication list and it contained about fifteen different prescription medications. And I was still pretty sick.

As I wrote about in the previous blog, I began my integrative medicine journey by starting an alternative medicine for autoimmune illness called LDN and I also started with allergy testing. Since then, I have spent countless hours, fifteen hours to be exact, having extensive intradermal allergy testing done. I was shocked by the results. I am allergic to most molds, weeds, grasses, and trees as well as cats and dust. I now receive five allergy shots every single week.

As many of you know, I also changed to a Paleo diet. This was not suggested by my integrative medicine doctor but rather it was something I researched on my own. I strive for an 80% compliance rate with this way of eating.

However as the months went on, I started to become frustrated with my integrative medicine doctor. I felt very rushed during my appointments and I didn’t feel like I was being treated as a whole person, which is an integral part of this modality of treatment. I was anxious just going to these appointments. I wasn’t getting returned phone calls in a timely manner over an issue that was pretty significant at the time and I felt like my practitioner and I were not connecting in a therapeutic way. He wasn’t the right doctor for me.

However I had been doing a lot of research about the use of integrative medicine in treating autoimmune illness and on top of that, I really liked the rest of the staff at the wellness center. I looked into switching to another provider. I have to be honest, this was very difficult for me because I still have a hard time advocating for myself at times. Especially since this is a relatively small practice and I knew there was a chance of running into my old provider. But at the end of the day, my health and wellness is the priority.

Yesterday was my second visit with my new practitioner. I will call her S. She is a physician’s assistant who is new to the practice. This did give me pause when I made the appointment because I wanted to make sure I saw someone with experience. I decided to take a leap of faith and it certainly paid off.

I never feel rushed during my visits with S. and she made it very clear that she is there to help me get as healthy as I possibly can. One of her concerns was about the GERD medicines (PPI’s) I am on due to my Sjogren’s. I knew there were risks to long term use of these medications (Nexium and Zantac) but I didn’t know the full scope of the risks and issues associated with their use. If you do a Google search of “risks with PPI’s”, you will see what I mean. She also explained to me about how our body needs stomach acid for proper digestion and that it is likely I am not absorbing the nutrients and supplements that I am taking because I am suppressing my natural stomach acid. It seems counterproductive to me to eat very healthy and take supplements if I am counteracting their effects. However I also know that my reflux issues are real and severe due to my malfunctioning esophagus. I have had some relief from dietary changes but it hasn’t been enough.

S. suggested two supplements that I can take for my stomach (Mastica and Zinlori 75) that helps restore the natural state of digestion, rather than suppressing it. She told me to stay on my prescription meds until these have a chance to kick in and then if I feel comfortable with it, to start weaning off of them. She compared the PPI’s to prednisone. They both suppress the problem but they do nothing to solve it.

This is where things become tricky for me. I do realize that as my prescription med list shortens, my supplement list gets longer. And I am OK with that because it is part of getting my body to heal itself and I imagine I won’t be on these supplements forever. I have also noticed that as the shift occurs, I am starting to feel better. However the issue for me is trying to deal with all the other specialists that prescribe these medications. To them, they are doing what they think is in my best interest but they are not the ones living with the consequences of these medications; many of which sometimes don’t even work all that well.

So I had a heart to heart with S. about this. I explained to her that I take a lot of crap from my other doctors for going to the wellness center. There is an incredible amount of resistance in the medical world to the concept of the body being able to heal itself. I have already had to deal with my rheumatologist and pulmonologist regarding this and now I am going to have to face my gastroenterologist who is old school and most likely will flip out over me weaning off my meds. S. was very supportive about this. She gave me a great pep talk about continuing to advocate for myself and my body. She said that it is my choice to take her recommendations and there is no pressure to do so. She spent a lot of time printing out some appropriate articles for me that may be helpful to present to my other specialists. Our discussion reminded be that I am strong and resilient. I have to remember to be that way when I go to my other doctor’s appointments. S. made me feel like we are partners in this journey and it was in that moment that I knew I could trust her. I knew she was the right fit for me.

I will be honest, the road of integrative medicine is still a very scary road for me. It defies everything I was taught in nursing school. It defies everything I have been told by the bazillion doctors I have seen over the years. That being said, I know in my gut that something about it feels very right to me. As my medication list shortens more and more each week, I look at where I am now compared to where I was at this time last year and the evidence is there. I may not be a vision of perfect health and I may not be in a place to go back to work yet, but I am definitely several steps closer.

I know that what may work for managing my health may not work for everyone. But I am taking the time this morning to write this because I want people to be aware that there are other options to treating your autoimmune illness, as well as the many other chronic illnesses. There are answers and soutions beyond the pharmaceutical industry and I think we all owe it to ourselves to explore as many of those options as we can whether it be vitamins, supplements, diet, exercise, massage, acupuncture, meditation, stress management, yoga, reiki, prayer…whatever it is that you feel comfortable trying. Open up your computer or visit a bookstore to learn more. Don’t settle for what you’ve been told. Don’t settle for the words “there is no cure.”

Learn.
Fight.
Reclaim your body.

The Paleo Lifestyle

March 30, 2013 / / 8 Comments

I have made a grave oversight. I was planning on writing an update today on how the Paleo lifestyle (I hate the word “diet”) has been going for me. I was scrolling through my blog posts to see what I wrote during my first Paleo blog entry and guess what? I never wrote one!

I meant to, I really did. But I started my thirty days of a strict autoimmune Paleo lifestyle the day before my fiancĂ©’s mother died and it was not the priority. So now I am going to give you the recap of the past two months.

I am not going to spend much time describing the Paleo eating plan because a Google search can give you more information than you ever could possibly want. Basically it means that you eat whole, non-processed foods just like our ancestors did. Meats, vegetables, fruits, nuts, seeds, certain natural oils such as olive oil and coconut oil. No dairy, grains (even gluten-free grains are off limits), legumes, sugar (except naturally occurring sugars in fruits), soy, and refined seeds oils such as sunflower, vegetable, and corn oil.  Now, I had done a ton of research about this for a good five months before I even attempted changing my eating because I was going to go one step further. I was going to do the autoimmune protocol of the Paleo lifestyle which meant I was eliminating nuts, seeds, eggs, tomatoes and all tomato based products, eggplant, alcohol, potatoes, peppers, and certain spices that are pepper based such as chili powder.

Have I mentioned how much I LOVE potatoes? And gluten/dairy-free pizza??

So I embarked on my little experiment and after the thirty days, I decided to add seeds and nuts back into my diet. Adding one food back in at a time from the autoimmune protocol list is allowed so that you can see what you can tolerate. From time to time, I will also have a pepper based spice because I absolutely love buffalo chicken; which I make at home.

I will be honest, this lifestyle change has been one of the hardest things I have ever done in my life and trust me, I have had my challenges! I went through terrible sugar withdrawals the first two weeks or so and I found it very challenging to eat anywhere besides in my own house. However I was reading anecdote after anecdote of people with autoimmune disorders who were having improvement in their symptoms by eating a Paleo food plan. If there was even a chance that I could avoid going back on steroids or maybe even become more functional because of what I was eating, I had to stick with it. The Paleo lifestyle is also not just about what you eat. It’s also about moving your body, attempting to reduce toxins in your environment, and cutting back on stress.

Before I started the Paleo lifestyle, I had been eating gluten and dairy-free for a year. While I do think that helped a bit with my symptoms, it wasn’t enough. However when I look back to what I was eating, a lot of it was processed dairy and gluten-free foods. I stayed away from anything high in fat because I wanted to lose weight. I would eat a whole bowl of rice for lunch on many days. A food that probably spiked my blood glucose levels. If you are interested in the Paleo concept, I suggest that you do some research on what causes people to get fat and unhealthy. It is not the 85% ground beef you are eating, but rather the copious amounts of starches and sugars we eat in processed foods. There is a lot of scientific theory to it and rather than pretend to know exactly everything behind it, I am going to refer you to two books that I found extremely helpful: The Paleo Solution by Robb Wolf and Practical Paleo by Diane Sanfilippo, BS, NC. And again, there is always Google!

Bottom line is that I have learned fat is not the enemy. I will admit, I am still skeptical about the whole concept, but I am going for routine blood work next month which also screens my cholesterol, triglycerides, etc. so I will be interested in seeing the results of that blood work.

I guess one of the biggest questions I get is what do I eat? I eat a LOT of fruits and vegetables and I eat a lot of meats including beef, pork, chicken, turkey, fish, and on occasion, bacon. I now eat nuts and seeds including cashew butter, sunflower butter, etc. I cook and eat only coconut and olive oil as much as possible. Some Paleo enthusiasts say you should watch your fruit intake if you are trying to lose weight but I feel strongly that I need the nutrients of the variety of fruits that I eat and my primary goal right now is to be healthy. If I lose weight, great. If not, oh well.

I have had to completely retrain my way of thinking in terms of meals. No more cereal, pancakes, or yogurt for breakfast. Often I have leftovers from dinner the night before. The variety of food I have tried in the past two months has increased by at least fifty percent. I have discovered a love for sweet potatoes and a hatred for avocados. As often as possible, I eat grass fed and wild caught meat and fish in order to avoid hormones and other nasty things that grain fed animals eat. Eating out is even more of a challenge than when I was only restricting my gluten and dairy intake but is getting easier. We don’t eat out all that often but when we do, we chose a place that will not think twice about accommodating my needs. I have to say that I actually enjoy eating out more now because I am eating higher quality food as opposed to fried and processed food.

Overall, I would say that I am about 75% compliant with eating Paleo in the past month. After the first month, I realized that I had to make this a lifestyle which meant making it doable. Progress not perfection became my motto. Most Paleo proponents state that the goal should be to be eating Paleo 80% of the time. Although my basic diet is meats, vegetables, fruits, nuts, and seeds, I do indulge in a regular meal or food from time to time but I make sure it is something I will absolutely enjoy every bite of. For example, last week I was on a six day course of steroids for non-autoimmune reasons and I decided I had to have a buffalo chicken pizza from a local establishment. And a regular beer to go with it. Typically, when I eat something non-Paleo, I still make sure it is gluten and dairy-free but I needed that one exception on that particular day. I enjoyed it and the next morning, I was right back on track. Some people may say that I am not doing the autoimmune protocol properly. I say that I am living my life.

I did a little experiment several weeks ago where I went off my Paleo eating plan. My fiancĂ© and I were going out of town to visit family and I wanted a weekend where I didn’t want to have to think about what I was going to eat. I even ate macaroni and cheese! After several days of that, I can honestly say that I was ready to go back to Paleo. My joints hurt more than usual, I felt like I had the flu, and I was craving salads.

The bottom line is: Overall, I am eating healthier than I ever have in my entire life. I cannot remember the last time I had a bowl of rice and I don’t even miss it anymore. I am feeding my body whole, nutritious foods. And I have lost weight. Not a lot, maybe a pound every two weeks but what has been more noticeable is the change in my body shape. Fat is turning to muscle. I don’t feel bloated anymore; unless I eat buffalo chicken pizza!

More importantly, let’s talk about my autoimmune symptoms. First I have to disclose than I am also taking a new alternative medication called low dose naltrexone (LDN) which I think has also benefited me so it is hard to ascertain if the improvement is due to my diet, allergy shots I have been receiving, the LDN, or most likely, all of the above. I am currently off steroids and my other autoimmune medication, Arava. That fact is simply amazing. I do have some joint pain but this is precipitated by exercise and/or not enough sleep. My dryness symptoms have improved somewhat which was recently noted by my eye doctor. My asthma is under control and the biggest change I have noticed is an improvement in my reflux and esophageal dysmotility symptoms. Fatigue, unfortunately, is still a major issue at times. I have not noticed any improvement in my Raynaud’s symptoms. I still struggle day to day much more than the average person without an autoimmune illness but at this point, I am struggling less than last year at this time.

Now could all of this be coincidence? Possibly. Maybe I am just in an upswing with my illness. But I am going with the theory that time will tell and meanwhile, I have absolutely nothing to lose.

« Older posts Newer posts »

© 2025 For Everything There is a Season

Theme by Anders Noren — Up ↑