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

Category: exercise (Page 1 of 2)

Continuing Down The Road Of Integrative Medicine

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.

Low Dose Naltrexone Update

It’s Saturday morning and a perfect time for blogging. Life has settled down quite a bit here over the past few days. Life has been nothing but complete chaos and stress since about November and despite the fact that I think I have handled the stress fairly well, I am praying for no more crises for at least the next few months. The rest of the year would be nice too!

I have been playing catch up this past week with a lot of things I have neglected as of late, namely wedding planning, housework, and agent hunting for my book. More importantly, I have been trying to catch up with those friends and family that I have been neglecting and I am slowly but surely accomplishing that. I also have a list of health related blog topics in my head that I really want to write about as there has been so much going on and I think that the experiences I have been having might be useful for people to read about.

I think today I am going to start with an update about how I am doing with taking low dose naltrexone (LDN). I have been getting e-mails from people asking me if the LDN is working, if I am having any side effects, etc. The first post I wrote about LDN you can find here: Low Dose Naltrexone. If you have an autoimmune disorder, I think the post is worth a read. LDN is also being used for other illnesses other than autoimmune diseases but I try to write about what I know based on my experience and that experience is with taking LDN for Sjogren’s syndrome.

When I wrote the first blog entry about LDN, I was five weeks into taking it. Now I am about ten weeks into it. Since the five week point, I have been able to completely finish weaning off of prednisone. This was no small feat mind you. I had been taking prednisone for about fifteen continuous months, with the exception of one month where I had weaned off and had to go back on it. I did have some difficulty coming off the prednisone and the withdrawal symptoms were tough for the first two weeks or so, but my body seems to be slowly adjusting.

Before I came off the prednisone, and while on LDN, there was a period of about three weeks where I was feeling amazing. I mean, AMAZING! I went into my rheumatologist’s office for a routine appointment and told her that I had not felt that way since before all this autoimmune fiasco began, which was five years ago. Can you imagine feeling like yourself for the first time in five years?!? It was incredible.

However of course that did change when I stopped the prednisone but I am trying to be patient and give my body the time it needs to adjust. Part of thinks that it would have been nice to not have messed with the prednisone and enjoyed feeling good for a while longer. However the other part of me felt stronger that I did not want to be dealing with prednisone withdrawals and possible flare up issues closer to my wedding, which is three months away. This weekend it will be one month I am off the prednisone and that is usually my tipping point for things to go awry so I am crossing my fingers. Speaking of awry, at this point I am only having two issues, severe itching and hair loss. I thought the issues were related to coming off prednisone or perhaps even related to an autoimmune flare starting, but it appears this is probably not the case. I will hold off on the details of that situation for now until I have more information.

Overall, I think the LDN has had a positive effect on my autoimmune symptoms. When I came off the prednisone, my migraines initially got worse but are improving with the help of a supplement I was given by my integrative medicine doctor called petadolex. I have begun to have some minimal joint pain in the mornings that quickly goes away but other than that, I seem to be holding steady in regards to my pain levels. I have managed to wean off my steroid inhaler and currently take no medications for my autoimmune related asthma. That is a big deal. I am off my prescription migraine medication, another autoimmune medication called Plaquenil, and a medication that was being used to stimulate saliva called pilocarpine. I have noticed a small improvement in my dryness symptoms. My use of pain medication and Motrin has decreased.

I am able to do short periods exercise on a regular basis and am having less painful after-effects of the exercise as compared to before LDN. With the exception of the time period after I stopped prednisone, I have noticed an improvement in my mood and anxiety levels. I have not noticed any improvement in my esophagus/swallowing issues since starting the LDN. I had a few meals where I forgot to take my Procardia, which enables me to swallow more easily, and I immediately regretted not taking the medication. The LDN also has not made a difference in my reflux issues. The debilitating fatigue that I experience improved initially but I have been struggling with my energy levels since coming off the prednisone.

The only side effect I have noticed from LDN is insomnia. It has improved over the past month to the point that I am willing to continue riding out the side effect because the benefit is worth it right now. I am experimenting with some different natural solutions to this problem and it is also worth noting that I was having some insomnia issues prior to starting LDN.

So that is the scoop. I do have to mention that in addition to starting LDN, I have also begun going for allergy shots every week and have drastically changed my diet to an autoimmune protocol of the Paleo diet. However I did not start either of these treatments until after I had that three weeks of feeling great so I do strongly believe that the LDN has been a contributing factor in some of the improvements I have experienced. I am still on 3mg and am holding off on going up to 4.5mg until my insomnia is more under control as lack of sleep is a huge trigger for autoimmune symptoms.

Am I still skeptical? Sure. The improvements I have had could be a fluke but I don’t think so. I do think it is a situation where time will tell for sure. My goal is for LDN to keep me off the steroids. If that is the only benefit I get, it will be worth it’s weight in gold.

Partners In A Healthy Lifestyle

The very first time I ever noticed my fiance, I was sitting in my usual pew at church. He was walking down the opposite aisle of the church to sit in his own pew by himself. He had a certain presence about him. Maybe it was his long trench coat that hung on his 6’2″ frame or his stylish cowboy hat. Maybe it was his unassuming presence or the gentle way he looked at people when they were talking to him.

The very first time I knew, although I was in denial about it for months, that I was very attracted to my fiance, he was kneeling by my side after church, offering to lend me some of his movie collection as I was trying to recuperate from a very difficult hospitalization. I subsequently fell in love with him for a million and one reasons. Attraction was a part of that love. I was attracted to him on an emotional, mental and of course, physical level. In my eyes, I never saw him physically as anything less than perfect.

So because of this, it came as a surprise to me when last year he mentioned to me that he had lost weight since we started dating in September 2010, that this weight loss was intentional, and that he wanted to lose more. He told me how much he weighed when we started dating and again, I was surprised. I had never thought of him as overweight and to me he had been perfect just as he was when we started dating. I guess that is what happens when the pheromones are in charge! I found him attractive on all levels and his weight was irrelevant to me.

Ignorantly thinking that men are not as concerned about self image as woman are, I didn’t think much of it and 2012 came upon us. I drastically changed my nutrition plan, eliminating gluten and dairy (to help control my autoimmune symptoms) from my diet which meant that at dinnertime, Chuck did too. After my Guillain-Barre fiasco in February, I got more serious about my health. I started exercising regularly and fine tuned my nutrition plan; eating healthier than I had in my entire life. Because Chuck and I are together most evenings and weekends, my healthier eating affected him as well. It was important to him that I be as healthy as possible and do whatever I needed to do to try and manage my autoimmune illness and although I offered, he never considered the possibility of making two separate meals when we ate together.

And as the months have gone by, I have noticed the changes that he has made one by one. Getting to the gym more often. Eating smaller portions at meals. It has been interesting to watch because he is not dieting, but rather just making lifestyle changes, one at a time. It has been great because to be honest, it has made my lifestyle changes a LOT easier when there are not always so many tempting foods in the house and when your partner doesn’t want to eat out all the time. That is not to say that we don’t treat ourselves or indulge from time to time but when we do, it is without reservation or guilt.

He has become my biggest fan and cheerleader in my quest to become healthier and lose weight. For the first time in my life, I have a partner that supports my mission. It is also the first time I have been in a relationship where I am losing weight rather than gaining weight. And he has never ever complained. Not once. He eats every single gluten-free, dairy-free, vegetarian, sugar-free, cardboard tasting recipe I have ever tried. Together we figure out which ones we both like more than others and then I experiment some more so we are eating food that we truly enjoy. When he cooks on the weekends, he cooks gluten and dairy-free. He makes sure the ingredients are measured so that I can then calculate the Weight Watchers points as I do the Weight Watchers program in addition to my gluten and dairy-free lifestyle.

I have come to realize that we have become quite a team. We each have our own strengths and weaknesses when it comes to nutrition and exercise. He is better at staying away from take out and fast food. I am better at making sure we have vegetables with our meals. He is better at the fitness aspect of things and has been good in helping me construct an exercise plan that is doable with my illness. I am better at meal planning and keeping the kitchen stocked.

I have blogged about and been very open about my health and weight loss journey but here’s the thing. It is not my journey. It is OUR journey.

That man that I was so attracted to two years ago? I realized when I looked at him about two weeks ago that he is NOT the same man. Not physically. I was so wrapped up in my own journey that although I knew he was losing weight and I could wrap my arms around him a lot easier, I was not fully aware of his amazing transformation.

I saw him getting dressed that morning and just exclaimed “Oh my God!”

I exclaimed a lot of other things but well, this is a public blog so we will leave it at that.

He had muscle definition in his abdomen, legs, and arms that I had never seen before. The result of exercising five days a week. The result of eating healthier. The result of losing thirty pounds in the two years we have been together.

I have to admit, it gives me a twinge of guilt now and then when I look at him. I am not any more attracted to him than I was before he lost weight but I cannot lie. He looks great. I fully appreciate the changes in his body and I have to wonder if on some level that makes me a bit shallow.

But then I stop and think about how concerned I was about his elevated blood pressure at his doctor visit last year before he lost weight.

I stop and think about how maybe this weight loss might prolong his life and therefore our time together.

I stop and think about how happy he is with himself and how proud I am of his accomplishment.

And I realize that those are the things I am really appreciating.



August 2012
 

Diet and Exercise Update

“Take care of your body with steadfast fidelity. The soul must see through these eyes alone, and if they are dim, the whole world is clouded.” ~ Johann Wolfgang von Goethe

I realized this week that it has been six months since I made the drastic change to eliminate all gluten and dairy from my diet. Wow, six months! I think that is the longest I have ever stuck with a change in my eating habits. I can honestly now say that it is much easier than it was when I started back in January.

People ask me from time to time if I think that eliminating gluten and dairy from my diet has helped my autoimmune symptoms. It has not eliminated the symptoms but at this point, I feel that it has helped. On a few occasions I have intentionally eaten something with gluten or dairy in it and I have noticed a change for the worse either in my level of joint pain and/or in my asthma symptoms. In addition to that, I never have any gastrointestinal issues at all anymore and my menstrual cycle is much more tolerable.

I have become frustrated with this eating plan at times, most notably when I came off of my last round of steroids and my joint pain immediately came back. I sat and wondered why the heck I was making my life more challenging by eliminating gluten and dairy when I was still having joint pain. The point that I was missing at the time though was that the joint pain was not as severe.

One of the biggest advantages that I have found with living a gluten and dairy-free lifestyle is the changes it has forced me to make in my eating habits. Changes that have positively affected my health, weight, and overall well being. For example, I have to plan out and think about what I am going to eat. Gone are the days of impulsively shoving something in my mouth because I am either hungry or because I crave a particular food. The options available to me at fast food joints and restaurants are much fewer and therefore I am spending much more time at home cooking meals from scratch which means healthier meals.

Many people say that eating gluten or dairy-free, as well as organic, is much more expensive but I would have to disagree. Yes, my food bill is more each week but it does not compare to the amount of money I save by not swinging by Subway several times a week or eating dinner out more than once every other week. I have also found that unless it is a homemade food, gluten-free products such as bread, muffins, etc. tend to be much more unhealthy and filled with more preservatives than non-gluten products. This has resulted in eating these items once in a great while and instead I choose whole foods such as fruits, vegetables, lean meats, nuts, and whole grains.

The second big change I made in my diet was making the decision to start the Weight Watchers program. This has literally been a godsend for me. I have found the program to be much more “whole foods” friendly than it used to be and I enjoy the fact that in addition to going to weekly meetings, I can also use their online program which enables me to work the program from my laptop or cell phone. I have found a meeting I really enjoy on Tuesday afternoons. Adding a Weight Watchers program to my gluten and dairy-free lifestyle has been a challenge but well worth it. Since my birthday, which was May 3rd, I have lost eighteen pounds. If you add that to the weight I have gradually lost over the past three years, my body is now fifty-five pounds lighter. Oh yeah.

I continue to go to the gym anywhere from four to six days a week. Exercising has become a more difficult task since coming off prednisone and sometimes I just want to say “the hell with it” and quit. But I don’t. I am committed to changing my life and I cannot let joint pain, fatigue, and migraines get in the way of that. I have however changed some of my routine around and have cut back on the length of time I am exercising until I can get my symptoms more under control. I have started taking Pilates classes which was a big step for me and I am in love with it. Right now my exercise regime consists of Pilates, water aerobics, lap swimming, the cross trainer, and rowing. My goal is to be able to increase the time of my workouts and try some other different classes once my joint pain has improved.

I love to exercise. Shocking but true. For most of my life it has been a chore and something I dreaded doing; when I did do it. It is different now though. It is a necessity for me mentally as well as physically. I have worked hard to find activities that are not only safe for my joints but also fun. Despite the physical challenges that I still have, every week I find that my body is getting stronger. Every time I swim a lap in the pool of sit on the mat in a Pilates class, I feel like I have more control over the body that I have spent so much time cursing.

My hope is that as I continue to lose weight and build a stronger body that more of my autoimmune symptoms will lessen or even disappear. If not, I figure the worst that can happen is that my new lifestyle will help prevent future issues such as heart disease, diabetes, and cancer. Not to mention how much better I will feel about myself.

Works for me.

Photo Courtesy of Google Images

Crossroads

I feel like I am at a crossroads in regards to my health, nutrition, and exercise lately. Merriam-Webster dictionary defines the word crossroads as: a crucial point, especially where a decision must be made. I am not certain that my decisions are necessarily crucial but you get the point.

Over the past two months I have slowly been weaning off my prednisone which was at very high doses to begin with between the oral tablets I was taking and the IV infusions. I finally came off of it three days ago. I knew it was going to be difficult. Historically I come off prednisone for a while and then ultimately go back on it at varying doses because my symptoms return. However this time I am determined to stay off of it for as long as I can unless I am in a very bad or urgent situation such as literally not being able to walk or if I am having extreme difficulty breathing. The reason I feel so strongly about staying off the prednisone is because I am forty-one years old and I believe that my doctor and I need to try another course of treatment. The risk of long term side efefects is high. Not to mention the ones I have to live with when on the medication. It is a toss up most of the time as to what is worse: the disease or the treatment. At this point, it has become a quality of life issue.

But I am in a lot of pain. The joint pain that notoriously feels like someone is driving a chisel into my bones. It is not the worst pain I have ever had but it is pervasive and it is starting to affect my daily life again. I know that if I call my rheumatologist, she will immediately put me back on the prednisone and I just can’t do that to myself again right now. Also, the adrenal gland gets shut off when you are on prednisone and they need time to work on their own again. While this rebalance is taking place, it is common to have symptoms like joint pain. I am hoping that this is all this pain issue is: a response to coming off the prednisone.

I am also at a crossroads with my exercise program. While I was on the prednisone, I was able to do a lot more than I can now. At this point, I cannot even swim without being in significant pain afterwards. And this upsets me. I have come to rely heavily on regular exercise to not only manage my weight but also my emotional well being. I am currently reevaluating the exercise program I have put in place to see how I can work it so that I can still exercise without paying such a heavy price afterwards. It is difficult though when I have made so much progress over the past two months in regards to my fitness level. All I want to do is keep going forward, not backwards.

The final issue to my diet. I have been working so hard on changing my lifestyle over the past six months and my dietary changes have been drastic. And now I am ticked off. Why? Because I have busted my butt for the past five to six months eliminating all gluten and dairy from my diet. I have drastically eliminated sugar as well. I did these things because it has been shown that gluten, dairy, and sugar can contribute to inflammation. I have sacrificed a lot to make this eating plan work for me and yet as I sit here typing, the joints in fingers are swollen and painful. I know I may be jumping the gun a bit because once my body chemistry evens out, maybe the pain will be better. But it is hard to not be discouraged when I had a lot of hope placed on my dietary changes making a huge difference in my illness. Not to say that it won’t but time will have to tell on that issue.

So what do I do now? Do I give up my gluten and dairy free diet? Do I let myself start having sugary dessert more often? Do I just sit back and use my pain as an excuse to not exercise as often or even at all? Most importantly, do I go back to my medicine cabinet and give in to the pain; knowing that relief may just be as easy as a 10mg tablet of prednisone?

Hell no.

Here is what I am going to do instead. I am going to go to acupuncture more frequently. I will keep reading and learning about pain management techniques and use them as much as possible. I will eat even healthier than I already have been. I will use regular pain medicine when I need to give my body a break from the pain. And I will still exercise. I am not quite sure how but I am resourceful. I will figure it out.

The most important thing I will do is….

Not give in.

I will fight to be stronger than this current flare up of pain. I will not use my illness as an excuse to eat crap or be a couch potato twenty-four hours a day. However, I will also be kind and gentle to my body in whatever ways it need me to be. I will have faith that this too shall pass. One day and one hour at a time.

Photo Courtesy of:  Image Crossroads (C) by www.martin-liebermann.de

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