Wednesday, April 27, 2011

A Few Of My Favorite Things

Apparently the word on the street (OK not on the street, just in my doctor's office) is that my autoimmune disorder appears to be Sjogren's Syndrome although nobody seems to be quite sure whether it will end up being my only autoimmune diagnosis. At the moment though, that is the case. Anyways, I refer to it quite a bit in my blog postings and it dawned on me that I never write much about the technical aspect of it. To be honest, the idea of that bores me to tears. I don't mind blogging about how a chronic illness affects my daily life, the emotional ramifications of it, etc. but I figure that if someone wants all that technical/medical mumbo jumbo, they can do a Google search.



However it dawned on me the other day that I go through a lot of effort managing the biggest issue related to Sjogren's and that is: dryness. In Sjogren's Syndrome, the body's white blood cells attack the moisture producing glands (known as exocrine glands) in the body. These little glands are everywhere, and I mean EVERYWHERE in your body. Therefore, when they are not working properly, it wreaks havoc on your entire body; even potentially causing organ damage.



There is no known cure. Actually, there is not even an accepted "standard" treatment in terms of medication. It is really hit or miss most of the time. This brings us back to the dryness problem. I have dealt with this constantly over the past three years or so and during that time, have experimented with more products than I can count. I have decided to list them as they are the products I use on a daily basis to help control the dryness. I am hoping that this blog posting (if anyone reads it!) will find its way to someone else suffering from this debilitating condition and be of some assistance to them. Just as a side note, I do not represent any of these companies, do not get any free products and therefore my opinions are unbiased. What may work for me though, may not work for everyone.



* Crane 3.4 Liter Ultrasonic Humidifier: A humidifier is a must for this disorder. I have to run it every night for at least nine hours to help keep my eyes, nose, mouth, skin, sinuses, and lungs from drying out. I stayed at a hotel recently without it and the results were not good. This particular one is easy to use, quiet, easy to fill/clean (cleaning regularly is a must), and not expensive. This is the third one I have used and by far, the best.


* Dove Cream Oil with Shea Butter lotion: I use lotion about twice a day, even in the warmer months, which can get pricey but for a reasonable cost, you get excellent moisturizing with this one. I also use Crabtree and Evelyn Body Cream and San Francisco Soap Company Body Butter for scented moisturizing, both of which will not disappoint.


* Systane Ultra High Performance eye drops: I can honestly say I have used every dry eye preparation on the market and these drops have been a godsend for me. With Sjogren's Syndrome, it is very important to get a drop without preservatives because the preservatives are very irritating to the eye.


* Lacrisert Ophthalmic Inserts: These are available by prescription only and most eye doctors do not routinely prescribe them, which is a crying shame. Something about it being an older treatment for dry eyes (I think that the drug representatives must not provide free lunches). I found out about them through the Sjogren's Syndrome Foundation and begged my doctor to let me try them. They are a little tricky to get used to (similar to putting a contact in), but I use them every night and have seen significant improvement with them.


*Aquaphor: This is a skin protectant that is available at most drugstores which is a petroleum base. It's pricey but a little bit goes a long way. I apply it with a Q-tip to the inside of my nose every night. It's also great for chapped lips and pretty much any dry patches on your skin.


* Ayr Saline Nasal Gel: Great for also lubricating the inside lining of your nose.


* NetiPot: I love the NetiPot. I am not even sure how I ever lived without it. It is a saline irrigation system to clear your sinuses and many people will swear by it to treat allergies and sinus issues. Sjogren's can cause sinusitis and I use it anywhere from one to four times a day depending on how bad things are. There are also those saline squirt bottles on the market, but I like the gentleness of the NetiPot's flow.


* Biotene Dry Mouth Products: God bless the Biotene company. They have really done a decent job of battling dry mouth, which is more than just a discomfort. I use three of their products every day: Oral Balance Gel, Moisturizing Mouth Spray, and Dry Mouth Mouthwash. It is pretty much the only things I have tried that have helped. There are prescription medications on the market for dry mouth but the side effects list scared the heck out of me so Biotene is my savior for now.


*Blistex Lip Medex: This stuff is not for the faint of heart. It is hardcore medicated lip balm. It comes in a bright blue tub you and will cure the worse dry lips possible. I use it once or twice every day and my chapped lips are a thing of the past. It doesn't smell all girly and pretty but I have other products for that.


So that is it. Those are my tried and true dryness products, at least for now!

Monday, April 18, 2011

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.

Friday, April 1, 2011

Taking Responsibility

A man sooner or later discovers that he is the master-gardener of his soul, the director of his life. ~James Allen


I attended a conference the other day in which some statistics were presented about obesity rates in different parts of the world. It stated that women in the United States have an obesity rate of 36% which earned us the number one spot for modernized countries. For men, it was somewhere in the low 30’s. Seriously? Note that these are percentages for women who are obese, not just overweight. The difference is that to be obese, your body mass index (BMI) must be greater than 30%. The rates for the countries that scored lower on the list such as Japan and Korea were in the range of 5-7%. I am sure considering the drastic differences in the lifestyle habits between us and our Asian friends that no one finds these numbers surprising, but the reality is, it is a strong statement about the lifestyles that we live.


I don’t want this to be a blog about numbers though. It is about health, our health and the health of those that we love. We are an incredibly unhealthy society and I am no exception. I have been overweight (and then obese) since I hit puberty. At my highest weight, I was approximately 100 lbs. over what experts would consider a “normal” weight for me. The reasons for this were many: bad eating habits as a child, lack of exercise, antidepressent medications, autoimmune medications (especially steroids) and the big one-emotional eating. I developed what I think to be an addiction to sugar and processed foods. I come from a family where heart disease, diabetes, and especially cancer are rampant. I have a mother who has had ovarian and breast cancer (breast cancer has found to have obesity as a risk factor) which subsequently puts me in a high risk category. I myself am a cancer survivor and because of treatments I received, am at risk for secondary cancers. But yet, that didn’t stop me from consuming quarter pounders and french fries. Despite the insane amount of health problems I have had (many not weight related but that is besides the point-I was sick of being sick), I still threw crap like soda, fried food, cookies, candy, potato chips, etc. etc. into my body on a daily basis.


Because of many factors, I lost a good deal of weight over the past two years. Mostly because I dealt with my emotional eating issues (some of it in therapy) and no longer turn to food for my comfort. I was more physically active by walking my dog on a semi regular basis. I was cooking more at home. The reality though was this: I was still overweight (technically still “obese”). I was still unhealthy. Even though I had made some great strides with Chinese medicine in dealing with the autoimmune disorder, I was still plagued with pain and fatigue. I was sick of being sick. I was sick of craving crappy foods. I wanted to be able to get through a day like everyone else. I wanted to learn to ballroom dance. I wanted to be fit. I wanted to be healthy. I needed to take responsibility.


So about a month or so ago, I decided to take responsibility for my body. I have spent an obscene amount of time reading, researching, and figuring out how to get myself out of this hole that so many of us have fallen into. A lot of it is mental. I really wasn’t sure I had the capability to be healthy and fit. I didn’t think I had the capability?!? How sad is that? That’s ridiculous Yes, I may have some physical limitations but for whatever I lack in that area, I make up for in intelligence and determination! I mentioned this to my boyfriend (the not being able to do it part) while we were watching the Biggest Loser one night and he just looked me right in the eye and said he thought I could do it. He thought I could lose that last 40 lbs. and be fit. Like they say, sometimes you just need one person to truly believe in you...


I will not diet. I strongly feel that dieting is harmful to not only a person’s body, but also to their soul. What I did do is change my nutrition. After I had started acupuncture last November, I had made some changes such as cutting soda out of my diet (one of the hardest things I have ever done) already, but I needed a big overhaul. So I have begun eating I guess what is called a “clean” diet. I am trying to focus on fruits, vegetables, whole grains, and lean proteins. My goal is to reduce (and hopefully eliminate) processed foods. That is what makes us unhealthy and fat. I try to eat organic as much as possible. I am not perfect at it but I do the best I can and try to be patient with myself. It’s a learning process.


Exercise has now become a regular part of my life. I stalked Planet Fitness’s website for a while waiting for a good promotion so I could afford to join a gym. I prefer to spend time outside walking my dog, but I figured the gym would give me a place to exercise so I have no excuses for when it is raining, snowing, too hot, or too cold outside. I do live in New England after all! I also wanted to see if I could build up some muscle strength by using weight machines. The exercise part has been very tough for me to figure out in terms of my joints, fatigue, etc. I have to closely monitor what I’m doing and when I am doing it in order not to overdo it. But I just keep telling myself that research has proven beneficial for joint pain as well as asthma so I keep at it. I do think it will get easier as time goes on.


So that’s my story…and I’m sticking to it! I have to admit, it is not an easy story to blog about (who wants to admit that their BMI is over 30??) but I figure that I am not alone. I can’t be alone. Over 1/3 of us are obese in this country. Some people say they are OK with that, being obese or overweight. They say that they only live once, so they are going to enjoy their daily diet of double cheeseburgers and french fries. To that I say: power to you. Me? I only live once too. And you can sure bet that I am going to enjoy the hell out of it for as long as I possibly can. And it’s all going to start by taking responsibility.