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

Category: asthma (Page 2 of 2)

Going DownThe Road of Integrative Medicine

 

“Progress always involves risks. You can’t steal second base and keep your foot on first.”~ Frederick B. Wilcox

 
 

I had been toying with the idea of seeing an integrative medicine doctor regarding my autoimmune issues for over a year. Integrative medicine takes into account the whole person and uses both conventional and alternative medicine as treatment. It focuses on body, mind, spirit, and community rather than just flesh, bones, and organs. It combines conventional medical treatment with complimentary and alternative treatments (CAM). Some of these CAM practices and treatments include dietary supplements, energy healing, clinical nutrition, and detoxification. Integrative medicine focuses on eliminating the cause of the disease rather than just managing the symptoms. Some people see integrative medicine doctors as quacks and some people view them as miracle workers. I know people who have seen them and the reviews have been mixed, although I would say I have heard more positive experiences than negative ones.

Despite the fact that the autoimmune illness I have, Sjogren’s syndrome, had been unstable for years (except with higher doses of steroids which are a nightmare to deal with), I had put off the idea of seeing an integrative medicine doctor. It wasn’t that I hadn’t dabbled in what I guess would be called alternative medicine, such as acupuncture and massage, but the idea of anything other than standard Western medicine making me healthier seemed foreign to me. Maybe that was due to the fact that I am an RN. I have been trained in traditional medicine and it is all I’ve ever known. However it was becoming clearer to me that perhaps traditional medicine alone was not going to be the answer for me. Not that I was looking for a cure mind you. I had accepted the fact that I have a lifelong chronic illness. But rather, I needed more effective tools and treatment to improve my quality of life because as it was, that quality of life seemed to be going downhill year by year.

So this past November I went in to see a doctor at Northampton Wellness Associates here in Massachusetts. The practice is a group of integrative health care practitioners. I will admit, I was skeptical but my skepticism dwindled as I spoke with my new doctor. We discussed my history and a lot of the things he said made perfect sense. For a while now, I have often wondered if my autoimmune problems were triggered by the radiation therapy I had for lymphoma in 1996. I was never a particularly sick child or teen but from 1996 on, one health problem after another crept into my life. I did not share this theory of mine with my new doctor (Dr. L) but he said the same exact thing to me. He thinks that I am genetically predisposed to an autoimmune disorder (my sixty-five year old father was recently diagnosed with one) and that the months of radiation treatments brought out the autoimmune illness. He was quick to point out that this was unavoidable. I had to have the radiation in order to save my life, but now we must also figure out the best way to deal with the end result of that possible trigger.

He also went on to explain that most of the symptoms I experience are autoimmune in nature such as my asthma, migraines, joint pain, allergies, etc. Now I had always thought this and my rheumatologist had made some associations, but the further back we looked into my adult health history, the more I realized how connected all my ailments were. Dr. L also stressed that there may be several other contributing factors to my autoimmune issues such as allergens, environment, diet. etc.

We came up with a plan. I agreed to go for allergy testing which would initially be done by blood work. He did warn me that the blood testing for allergies is not always accurate but it is the least invasive preliminary step in the allergy testing process. I ended up testing positive for two different mold allergies that are often found on certain foods and so I am now beginning to attempt to eliminate these foods. Luckily, many of them are gluten or dairy based foods, which I already have eliminated from my diet.

However my blood allergy testing also did NOT reveal a cat or dog allergy; both of which I know for a fact I have due to traditional scratch test allergy testing I had done years ago. I spoke with the allergy department at the Center and decided to continue on to the next step of intradermal allergy skin testing which I will begin next week. The intradermal skin testing is significantly more reliable.  I thought it was important because if there is any chance that allergens (especially to my dog) were contributing to my autoimmune issues, I may want to pursue non-medication treatment for it; specifically allergy injections.

Luckily, at this point, my health insurance covers a majority of the costs for Dr. L. My health insurance changed January 1st but at my November visit, I had my regular copays for the doctor visit and the blood work. I have checked with the Center regarding my new insurance which will have the same coverage as my old one, including for allergy shots if I do definitely go that route. However I am aware that there will probably be other suggested treatments that may not be covered by my insurance but my philosophy is to take that as it comes. I am also trying to look at it from the perspective that further treatment may help me eliminate some of my current prescription medication and overall health care costs (think hospitalizations and ER visits) and allow me to cut the cost of these, all of which have skyrocketed.

I made it very clear to Dr. L that I did not want to abandon my traditional treatment for the Sjogren’s at this time but yet, my goal was to eventually get off as many of my prescription medications as possible as I was on at least thirteen different prescriptions. That is a ridiculous amount of medication and I felt that I was probably having medication interactions. He was very receptive to this and said we would take it one step at a time. We would start with allergy testing, I would continue to wean off my steroids (which was my plan with my rheumatologist anyways), and he wanted me to start a new medication.

The idea of another medication surprised me coming from this type of doctor. It is called low dose naltrexone (LDN) and honestly, it is worthy of a blog entry all by itself. I had never heard of it before and it required a lot of research on my part. It is an “alternative” medication that he routinely prescribes for all of his autoimmune patients as it has been shown to have the capability to regulate the immune system and has had some good outcomes with certain autoimmune disorders. However I have only been on it for a month and am waiting a little longer to see how it continues to work out before I write that blog. The LDN can take a while to see a full effect so we agreed that we would meet again in February and see where things are at.



I liked the fact that Dr. L was treating this as a process and not overwhelming me with a million treatment options all at once because to be honest, I have seven or eight other specialists who are doing a great job at overwhelming me, no matter how unintentional it may be. I will admit, the process is very intimidating for me. I know about all things in traditional Western medicine. I know when to trust what a doctor tells me and I know when a doctor doesn’t know what he or she is talking about. As a nurse, I know about prescription medications (well except for LDN!) but not so much about supplements and herbs. It is certainly a learning process and one that I hope will prove to be beneficial.

Am I still a little skeptical? Sure. But I am also skeptical about putting toxic, possibly cancer causing drugs into my body as I have been doing. I am skeptical about dangerous side effects I may have, and have already started to have, from being on steroids the rest of my life. I am skeptical about the quality of life facing me until the day I die. So really, what do I have to lose?

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

Lifting Up My Voice

“I don’t sing because I’m happy; I’m happy because I sing.” ~William James

Since my childhood years of going to mass every Sunday, I have always wanted to sing in a church choir. I know that is not exactly a very common ambition or goal for many people, but it has been for me. So many obstacles got in the way. First and foremost, if you want to sing in a church choir, you have to well, go to church. As an adult, I never attended a church on a regular basis until about five years ago when I made that oh so radical change from being a Catholic to becoming a member of the United Church of Christ. Also other things got in the way. I worked a lot of weekends as a nurse, I had stage fright (that was a big obstacle as a child/teenager!), I didn’t think I was good enough; the list goes on and on. That didn’t stop me from singing from my personal, safe little spot in the pew though on Sunday mornings.

Then I lost my job due to a medical illness and I was at church almost every Sunday morning. However part of my medical issues were problems with my breathing (asthma) and voice (vocal cord dysfunction) due to an autoimmune disorder. There was no way I could sing. Some days I couldn’t even talk on the phone it was so bad. As time went on and I finally got hooked up with a great pulmonologist, speech therapist, and acupuncturist, the breathing issues got more under control. Then I started to think (especially since I had so much speech therapy!) that maybe, just maybe I could pull it together enough to do some singing at church.

Around the same time, I was approached by my friend Kathy, who spent many years singing in our church choir and she assured me that the choir would love to have me whenever I could sing. There was a Christmas concert coming up and I figured what the heck, I had nothing to lose by trying. I have to admit, I did struggle quite a bit at first during the rehearsals last December. Between the Sunday morning church rehearsals and the Sunday evening hour long practices, I knew there was a possibility of backsliding. I was quite determined though. I worked hard on my speech therapy exercises to strengthen my vocal cords and was meticulous about doing everything my pulmonologist and acupuncturist instructed me to do. Sure enough, as the weeks went by, it gradually got easier and easier. The Christmas concert came and went. By February, it felt like the singing was actually making my breathing better and my vocal cords stronger. My pulmonologist was overjoyed and to be honest, so was I.

It is now April and we just had our Easter Cantata yesterday; approximately 4 ½ months since I joined the choir. It was a momentous morning for me. I sang through more than six songs and actually lived to tell about it! Not only did I sing, but I sang well. The day brought back memories from November 2008 and onward of multiple hospitalizations, weekly doctor’s visits, and the uncertainty of not knowing when my next emergency room visit would be. Funny how much can change in 2 ½ years.

It is so hard to try and put into words what singing with my church choir has done for me. It provides a more intimate way for me to worship God. It lifts my spirit and my soul when I struggle just with getting through the day. It has taught me patience, especially with myself (I can be my harshest critic). Singing with my choir has given me the opportunity to be a part of something bigger than myself. I have formed more cherished friendships. Every week I get to work with an incredible group of people to achieve a common goal: to lift up our voices in worship. And for that, I am quite grateful.
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