Thursday, April 26, 2012


"The water is your friend. You don't have to fight with water, just share the same spirit as the water, and it will help you move." ~ Aleksandr Popov

I have not been in a regulation sized pool or swam a lap since freshman year of high school. Sure, I have been in backyard pools and in the ocean but not a REAL pool. I learned to swim later than most kids; I was about thirteen or so. As an awkward, geeky, and somewhat overweight freshman in high school, the swimming portion of our physical education classes was a nightmare for me. I will spare you the details but at that age, you can just imagine.

Anyways, I recently changed gyms and one of the major factors in that decision was because this gym has a pool and I thought it would be a good way for me to get the exercise I need when my Sjogren's symptoms are flaring up; which can make even going for a walk difficult at times. However I had fallen five weeks ago and sustained a nasty wound to my knee which needed to fully heal before I could go in the water. This week it finally healed.

I had a lot of doubt about my ability to swim laps without making a spectacle of myself (completely unfounded worry) and I figured I would start my new found aquatic life with a water aerobics class. Of course this means going out in public in a bathing suit; which I had some anxiety over. It actually makes no sense because I go to the beach and walk around there in a bathing suit, but there was something about doing so in a pool area, at a gym with fit people, that seemed more intimidating to me. I hate the fact that even at the age of forty, I still concern myself with issues like this.

But of course I sucked it up and was constantly telling myself that people are there to work out and not notice how fat I may look in my bathing suit. Be brave I told myself. This is not high school. And I was fine.

The second I got my body in that pool, I felt like I was in pure heaven. I have struggled so much with my autoimmune illness and physical challenges over the past several months. I have also struggled with body image issues, as obviously noted above, related to not only the physical pain and fatigue I experience, but also related to the side effects of my steroids. These have included swelling, weight gain, and my hair falling out in clumps on a daily basis. In the pool though, my body feels less broken. It is lighter. I feel my muscles relax. I feel capable and strong. I even swam two laps doing what I think is a breast stroke. And I didn't have a heart attack.

There are multiple issues to consider when someone with Sjogren's syndrome spends time in a pool. Chlorine can be irritating to my already very dry eyes as well as possibly to my lungs. I did not put my face in the water today at the class, but I love to swim underwater. I think investing in a pair of swim goggles might be in order. I also need to remember to put in eye drops immediately before and after being in the pool. I am hoping that the chlorine will not be a problem for my allergies or lungs but if it does become an issue, that's what I have a pulmonologist for. Those of us with Sjogren's also struggle with severe dry skin issues which can be exacerbated my chlorine. Luckily, I live five minutes from the gym. My intent is to plan my morning so that I immediately go home and showe and apply body cream after being in the pool.

The class itself went well. I was not sure that I was getting much of a work out because my heart wasn't pumping as hard as it does with other forms of exercise. And of course there was no sweating involved. We did something called water walking which involved a flotation device thing. We did stretching and aerobic exercises in both the shallow and deep ends. We also used light weights with some of the exercises. It didn't even really feel like I was exercising at times although towards the end of the hour, I did notice I was appropriately short of breath. Time will tell because if I am sore tomorrow morning, then I had a good work out. Also I had an excellent night's sleep last night and I have been exhausted since leaving the gym. It doesn't feel like autoimmune related fatigue or coming off prednisone fatigue. It feels like your ordinary exhaustion from exercising.

Unfortunately, I also had to bring Molly for a walk this morning after the class as she has not been getting out enough and is acting like a total nut at times because of that. So now I am completely exhausted but besides a headache, I can say that I don't have any pain. It is still a challenge for me to plan my days so that I can appropriately pace myself physically in terms of getting in my physical therapy, strength training, and cardiovascular work outs. As well as walking Molly, housework, medical appointments, shopping, cooking meals, etc. Before Sjogren's, I could just plow through my day, but now my body requires frequent rest periods. It will all come together eventually I suppose. I have no choice but to make it work.

And the best part?

Ten minutes in the hot tub afterwards.


Sunday, April 22, 2012

Exercise and Sjogren's

"Movement is a medicine for creating change in a person's physical, emotional, and mental states". ~ Carol Welch

I've been doing a lot of thinking about exercise lately. And about having an autoimmune illness. No surprise considering I have been back in the gym for about two weeks now. I cannot lie; it has been difficult at times. Before the whole Guillain-Barre incident this past January, I was, in between Sjogren's flare ups, getting some exercise by walking my dog. I was also doing some strength training for a few months. However things are different now. Since I lost so much of my abilities to function with the Guillain-Barre incident, being able to move, walk, and just get out of bed has taken on a whole new meaning. I have definitely had to work harder at exercising in order to regain my strength, balance, and functioning.

With the help of a staff person at my gym and more importantly, with the help of my physical therapist, we have come up with a routine combining resistance work, weight lifting, and cardiovascular work in an effort to continue building up my strength, stamina, and to help accomplish my weight loss goals. The reason why I say it has been difficult is because I have so many factors working against me in my endeavor to get healthier and stronger. I am not exactly what you would call an athlete and never have been. I have the Sjogren's syndrome symptoms to deal with as well as issues with the nerves and muscles in my head and neck. And let us not forget that I am weaning down on my prednisone which tends to aggravate my joint pain, stiffness, and a host of other issues.

Many times I am sleep deprived either due to pain issues and medications. Many times I am unmotivated to exercise because I am just fed up with always struggling to get through the day. Many times I don't want to get any exercise because I know for a fact that it is likely I will be very sore the next day. And really, I already have enough pain and fatigue issues to deal with.

But I do it anyways.

I have found that all of those above reasons I listed for not wanting to exercise are one thing: excuses.

The excuses can go on and on. Poor me, I cannot exercise because I am in pain. Or because I have this terrible chronic illness. I am too tired. I can't use a a certain piece of equipment because I am too fat or too uncoordinated. I cannot exercise because I need the energy to do other things today.

I will be the first to admit that I have had to work much harder than I would have liked to work this time around in order to pace myself through the week so that I can get some type of exercise on an almost daily basis. Sometimes it has meant giving up something social I really wanted to do that day or not having my home as clean as I would like it. It has been a matter of prioritizing. I do this prioritizing because I strongly feel that exercise is going to be one of the key factors in helping me get well or at the very least, hopefully help decrease the incidence of further Sjogren's complications.

The results I have seen, first in the seven weeks of physical therapy I have had and more recently in the gym, have shown me how essential getting exercise is in the management of my autoimmune illness. Yes, I have been dealing with a lot of muscle soreness from using muscles that I didn't know I had. And I am absolutely useless after about 4pm as I am so exhausted from the exercise that I can barely function. But guess what? When my Sjogren's is in full gear, I am pretty much useless after 12 or 1pm anyways. Far as I see it, I am ahead of the game right now.

So the benefits I have seen so far is the quick recovery I have made from the Guillain-Barre. Until that 4pm time, my energy level has increased dramatically during the day which overall, has improved my quality of life. The withdrawal symptoms from the prednisone have been much better than usual although admittedly, I am not sure if this is due just to the exercise or to my dietary changes as well. The biggest change however has probably been in my stress level and overall well being. I try to do my work outs in the morning when I tend to have the most energy. I swear that I am getting high on the endorphins.

I think that oftentimes those of use who have an autoimmune illness or any other chronic condition feel that we cannot exercise as it will make us worse. Or that we are too sick to do something. And there are those rare people, such as quadriplegics, who truly cannot do any exercise on their own. However that is not the case for most of us.

It doesn't have to be all or nothing and there have been many studies proving the benefit of exercise on pain and fatigue; as well as the depression and anxiety that often accompany various chronic illnesses. There are so many different ways to exercise that do not have impact on our joints such as swimming or resistance exercises. You would not even believe the bicep muscles I have developed just from doing some simple exercises at home using an exercise ball and a resistance band. I guess the point is to just do something. Anything. Whatever you are capable of doing is better than nothing at all. And who knows, you may even surprise yourself.

Photo: Courtesy of Chuck Myers

Thursday, April 12, 2012

Trusting My Body Again

"Movement is a medicine for creating change in a person's physical, emotional, and mental states". ~ Carol Welch

It is two o'clock in the morning and I have to go to the bathroom. I try to get out of the bed and realize that I cannot physically get my body to sit up. I am too weak and don't have the strength to even get myself to the edge of the bed. I wake up my fiance, who was probably half awake anyways, so he can help me get out of the bed just to use the bathroom. I am frustrated and scared.

Three months go by.

It is eight o'clock in the morning and I am staring down a very large machine called a cross trainer. Seems like the biggest bang for my buck as it will give me a good cardiovascular work out with minimal impact on the already painful parts of my body. I expect to last three minutes on it. I start and my legs and arms just keep going and going. I am on it for twenty-five minutes. I am exhilarated.

I have won.

I found out three months ago that in addition to having Sjogren's syndrome, I was afflicted with a neurological disorder called Guillain-Barre, which was causing severe body weakness, difficulty walking, and severe pain to the point that I wished I was dead. Even the simplest of tasks was difficult. Guillain-Barre arrives like a freight train, does its damage, and leaves. I was extremely lucky that I had a milder version of it and was started on steroids relatively quickly which may have lessened the blow of the illness. I was never completely paralyzed and did not end up on a ventilator like some people do. I still count my blessings every day about that.

I have been working my tail off ever since January to get better. I already had several strikes against me due to the Sjogren's syndrome and the Guillain-Barre, along with some blood clots in my lungs; all of which presented more obstacles in my recovery than I knew what to do with. Physical therapy was, and sometimes still is, brutal and exhausting. In addition to all the previously mentioned diagnoses, I was also diagnosed with occipital neuralgia in February. This has resulted in severe head pain and headaches. Yet another obstacle. Or an excuse, depending on how you want to look at it.

But even on my worse days, I stuck with the physical therapy and as the weeks progressed, I started to notice a significant improvement in my strength. I no longer fell over when I crouched down to get a pot or pan out of the lower kitchen cabinet. I could lift a plant above my head again. Taking a shower was a routine task again although I must admit, I don't take my ability to do that for granted anymore. Come to think of it, I don't take my ability to do anything physical for granted anymore.

My most recent goal in physical therapy, besides getting the occipital neuralgia under control, was to get back into the gym. I was exercising in one way or another before this whole fiasco began in January which to be honest, is no small feat because of the Sjogren's syndrome. I am frequently plagued by joint pain, muscle pain, neurological pain, breathing difficulties, and the list goes on and on. Some days I would go to the gym and some days I would take a walk with my dog. I was usually not exercising to the point of winning any marathons, but I have found that pushing myself to get physical activity whenever possible has been helpful with my Sjogren's symptoms; provided that I do it within reason. Not to mention all the other excellent health benefits.

I had been going to a Planet Fitness in town and had decided that instead of renewing my membership there, I was going to try a different gym that had a pool. My reason for this was that my Sjogren's issues were occurring more frequently and if I had access to a pool, I may be able to get exercise in the pool on days that I would typically be too sick to exercise. It would be less impact on my joints. Problem was, I was hit with the Guillain-Barre before I had the chance to join this new gym. I was recently cleared by my physical therapist to get back to the gym. Unfortunately I had a fall three weeks ago and still have an open wound which will keep me out of the pool right now, but there were so many other things I could do at the gym besides swim.

If I could just get the courage to go.

Here's the thing: I was scared. I felt comfortable at my old gym. It was simple and familiar. There has been so much upheaval in my life over the past few months with my health and I find that I am not quite as open to change and new surroundings as I was once. I feel more vulnerable. I feel the need to protect myself. I have always been self conscious about how I look and gyms have always been intimidating to me; especially one like this that is not simply laid out and where I do not know anyone. All of a sudden I felt very insecure about this new place with its different machines, new classes, and unfamiliar rules. It was my insecurity at its finest you could say.

Today was the day to just do it. I was hesitant at first because I was having more joint and muscle pain than in past weeks and my head was acting up after the physical therapist worked on it extensively yesterday. But I had previously chosen today to start going because except for some blood work, I had no doctor appointments or other pressing commitments that I could not get out of if I had to. So if I was down for the count afterwards, so be it!

No excuses.

And guess what?

I loved it.

When I got to the gym this morning, I asked about signing up for their free two session orientation and the staff person that was working the desk, Tom, talked to me about what I specifically wanted help with. This of course led to a conversation about my physical therapy, why I was doing it, my diagnosis etc. He immediately put me at ease and gave me a lot of various ideas about different work outs, especially in regards to classes and the pool. All of a sudden, I didn't feel so overwhelmed. I felt like this was doable. I felt more secure.

I decided that today I was going to do my physical therapy exercises at the gym instead of at home and get an aerobic workout as well. I spotted the cross trainer, which is similar to an elliptical but looked more difficult as there was an incline. I liked the fact that it overlooked the pool area where I could observe a water aerobics class while I was working out. Besides some walking with my dog over the past week, I have not had any aerobic activity since maybe around Christmas and I anticipated that I would be starting from square one again. I jokingly told Tom that if I lasted three minutes without keeling over, that would be sufficient and I would move on to a bike or a treadmill, both of which had a lesser chance of making me pass out. We figured out, based on my age and recent physical issues, that my maximum heart rate should be around 140.

I don't know what the deal was, but I was on that thing for twenty-five minutes. Granted the machine was at the easiest incline and resistance, but who cares?? Maybe it was all those physical therapy sessions or hours and hours of doing exercises in my living room. Maybe three months on a new eating plan has helped. Who knows. I was surprised at how much endurance I had and how well I did cardiovascular wise. Not that it was easy, but I got through the twenty-five minutes unscathed. After so many long months of being in bed or on the couch, it felt so good to be sweating and to be able feel my heart pumping so fast again.

It felt good to be out of the house.

To be having fun.

To be able to out one foot in front of the another.

To trust my body not to fall apart.

I know that this morning's work out will probably wipe me out this evening and maybe even the next several days to come. There will be Motrin involved, maybe some stronger pain medication if I am desperate. Hot packs will once again be my new best friend. I also know that due to the Sjogren's syndrome, exercising of any type will always be a constant battle for me; probably one that I will have to deal with every single day of my life. But for today, I feel like I can say that I have conquered yet one more obstacle on my path to wellness and healing.

And you know what?

It feels pretty amazing.

Photos Courtesy of Google Images

Wednesday, April 4, 2012

"Why Me?"

Every hand in need that reaches for me
is a piece of my salvation.
The troubles they have mirror mine.
In acknowledging their demands.
I help heal their wounds, give them hope.
What I want is to be selfish and sit in the dark.
I want to scream... WHY ME!
But with the Grace of God, I cannot.
I sympathize with the pain and sorrow.
My compassion is the light by which I walk,
it is what heals me.

~ Cyndi Lamacchia

This is an excerpt from the poetry that was read during our Easter Cantata at my church last Sunday. This particular part was written by another member of my church and in the moment that it was being read aloud by my minister, the words grabbed me. It seemed to echo how I had been feeling about my life over the past several weeks.

I think it is a great piece not only because it sang to me, but also because it can be interpreted in many different ways; both religious and non religious. My first interpretation upon hearing it is that it is about Jesus. But then I realized that it could also be about many of us; those who are facing huge obstacles in our lives. Sometimes one obstacle right after another in a relentless fashion.

This particular Sunday morning found me feeling lousy and I was questioning whether I should get up and go to church at all. I was battling a sinus infection on top of dealing with some of the same ongoing neurological issues and I was also recovering from a nasty fall the week before. Not even to mention that I was weaning down my dose of steroids, which typically causes my body a lot of grief until my body readjusts to the new dose. The assault on my body just seemed to continue week after week. And honestly, I was sick and tired of it.

As Chuck was getting dressed that morning and I was debating in my mind whether it was wiser to get up and go or stay home and rest, a statement that is very atypical for me came blurting out of my mouth. I said that maybe I should get myself to church if for no other reason than to ask God why he keeps throwing one health obstacle after another at me with no respite. Why can't he just give me a break? I thought I was half kidding when I uttered the words but the thoughts and words came so fast that I think there was some truth to them. Because looking back at the past three months, it really has been one issue after another and let's face it, I already had a full plate to begin with.

"Why me?"

I don't do the whole self pity thing too often and to be honest, I don't think that God is up wherever he is plotting different ways to torture me. I believe in a loving God. Not one that punishes us. I like to think that there is a reason for most things that happen in life but lately, I am not so sure about that. Am I being tested? Do I just have terrible luck? As you can tell, I have been doing a lot of questioning lately about why I am in the place I am with my health. I don't blame God necessarily but I do sit back and wonder about it. Am I experiencing this in order to appreciate the many blessings that I do have in my life? Is it supposed to make me a stronger person? Or is it just the way it is?

Regardless, the onslaught of physical problems over the past three months has all led to me wanting to selfishly, as this poem mentions, spend more time than usual in the dark.

Stay in bed. Stay home. Let the illness win.

But I do not.

I keep going.

I keep going for many reasons:

For the family and friends who love me and have cheered me on day after day, week after week.

For all those affected by Sjogren's syndrome and other chronic illnesses I have met online and in person whose hand in need has reached for me. At times they have been MY salvation.

For myself because I like to believe that someday the light by which I walk will be much brighter.

It is very easy to fall into the "why me?" trap. Although perhaps a perfectly natural response, it is a futile one. The time and energy spent in our self pity over events that we may not have control over leads us to make less than optimum decisions. Decisions are something that we DO have control over. Instead of making the decision to give into our crisis or illness, we can make attempts at avoiding the dark place. Like deciding if we truly need to stay in bed and rest versus making an attempt to be in the world. Or like the decision to push ourselves on a difficult day to get outside and walk; even if it is just a very short distance. Maybe making a conscious decision to replace "why me?" with "how can I help you" to another person. It is not always easy to make these decisions as sometimes we should rest or not take that walk if it will do more harm than good.

This is the point in my blog entry where I wrap it up with some heartfelt opinion or realization but truly, I have none today. And that is not a bad thing either. It means that I still wrestle with the issue and like is implied in the poem, I am not alone in this. I would like to know what my readers think about this topic.

Do you ever sit back and say "why me?"

What do you do to avoid getting sucked into that dark place?

Do you feel that it changes the way that you think about God?

Photo Courtesy of Google Images

Sunday, April 1, 2012

Green Smoothies

I having been getting some questions lately in regards to my love affair with the green smoothie. These questions have included why I drink them, how I make them, what I use for ingredients, etc. I first learned about green smoothies last summer when I stumbled upon a website called My Big Fat Life by Rick Labrecque. He had lost a lot of weight by switching to a whole foods diet and drinking green smoothies was a part of that. There is also a lot of information on the web about green smoothies but I would like to provide some information about my personal experiences with them so that readers can get a general idea about them.

A green smoothie is basically greens and fruit blended. For someone like me, whom until 2 1/2 months ago, ate very few vegetables with their meals, it is a good way to get important nutrients into your body. Greens like spinach, kale, collard green, dandalion, swiss chard and such are nutritional powerhouses and provide an enormous amount of vitamins and minerals. Most people don't realize how important they are or that kale for examply, actually has more calcium than milk. By blending the green with fruit, you are able to absorb these vitamins and minerals more readily than if you were eating them cooked or in a salad.

So people sit here and think "Eww, blended spinach!" OK, with God as my witness, when you add the fruit to the smoothie in the appropriate amounts, you DO NOT TASTE THE GREENS! No matter how many times I tell people this, there are still some who do not believe me. All you have to do is try it. Now, the proportions are different for everyone. I have been drinking them long enough that at this point, I don't mind tasting the greens and I even like the taste. When I started out out making them though, I would do about 25% greens and 75% fruit. I can do a lot more than that now, up to 75% greens, but I usually run around 50/50 because of my medication.

Speaking of medication, I would be remiss if I didn't pause here and mention this. If you take blood thinners like Coumadin or you have blood clotting issues, you MUST talk to your doctor before dramatically increasing your greens intake. Many of the greens contain high levels of Vitamin K which promote blood clotting and can interefere with your medication or your health. I developed blood clots in my lungs recently, not due to green smoothies (I had not drank them in months) and had to go on blood thinners. The green thicken my blood and the blood thinners thin my blood so you can see the dilemma here. I do drink the green smoothies, but it is critical that I drink the same amount every day to keep my blood levels stable and I have also had to cut back on the amount of greens I use.

Anyways, besides greens and fruits, all you need is a blender. I have researched every blender on the market and tried more than my fair share. People in the green smoothie community say the best way to go is to purchase one of the high tech blenders in order to get your drink as smooth as possible. Blenders like Vitamix and BlendTec are awesome and do a million other things besides make smoothies but they come with a price tag of at least $400. I had gotten one of the above mentioned blenders as a gift and it did not work properly and I had to return it. I ended up buying a new Oster Classic for like $40 and it has done right by me. People say the cheaper blenders don't last as long. We'll see; going on about 10 months right now with my Oster. If you don't know what to do with your money or find this will be a lifelong habit for you, it's probably a wise investment. However do not think you cannot get a great green smoothie without one of the more expensive blenders, because you can!

So what do you do? I put some water in the blender first and then add my greens. I have found this to be the best way to get my green smoothie nice and smooth. I use the pulse feature a few times on my blender and then graduate to liquify. I make sure the greens are all nice and liquified before adding anything else. I think this is the biggest reason to my success with using an inexpensive blender. Then I add in my ground flax seed because it is high in Omega 3's and my fruit. I blend that all again and once mixed well, add some ice and use the ice crusher mode on my blender. Ahhh, delightful!

You can pretty much add anything you want to the blender. I have used soy milk, almond milk, chia seeds, soy yogurt, agave, honey, and a few other additives; be creative! For me, I have come to the realization that I don't want the extra sugar in my smoothies as the fruit is sweet enough so I have cut out the additives like honey and agave. I have also switched to plain water from the different milks because I want to keep the green smoothie primarily focused on the fruits and vegetables.

I typically make a whole blender full and after drinking what I am going to drink for the day, I put the rest into a glass mason jar. I found this little tip online and it is a great idea. The green smoothie stays fresher and will keep through the next day so you don't have to blend every single day unless you are drinking more than that. I have tried just storing the blender pitcher itself in the fridge overnight but I found that it did not stay as fresh and you could taste the greens more the next day. Also the mason jars are portable for road trips and such. I keep a stock of those wide diameter straws and all you have to do is pop one in the mason jar and off you go.

I have experimented with what seems like a zillion and one different combinations of fruits and vegetables and have found some favorites. The important part is to rotate your greens so that you are not using one for several days in a row. I typically vary my greens between spinach, kale, and collard greens. I also try to add in dandalion on a regular basis as it is a great detoxifier. Kale is the most difficult to blend and may require a little more effort but definitely worth it. I have found in the past few months that stores like Trader Joe's have packaged kale and a combination mix labeled "southern greens" which has a variety of different greens in it. Fresh organic produce from the local farm stand is always best but my feeling is that if the packaged stuff, especially in the winter, gets me to make and drink my smoothies when I am sick and tired, then it is worth it.

You can use pretty use much any type of fruit but my favorites tend to be banana, mango, kiwi, berries, grapes, and pineapple both because of the taste and the consistency. I have used other fruits such as apple, pear, and melons but I find that they don't mask the taste of the greens as well and they can be more difficult to blend in a less expensive blender. The sky is the limit when it comes to all of the different fruits and greens combinations you can use.

I just think green smoothies are a great tool in changing nutritional habits. I found that the more greens and fruit I eat, the more I want them or that I miss them when I skip a day or two. Your body will crave healthy food when you give it healthy food. I have not made any green smoothies for kids but I would think that would be a win-win situatio. Kids get to drink something funky looking, it tastes great, and they get all those important nutrients as well. And for those of you looking for healthier nails and hair, nothing will improve both of these like a green smoothie, trust me.

Happy blending!!