For Everything There is a Season

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

Page 29 of 45

When Mother’s Day Means Something Different

This is a picture of a flower that was handed to me today in church by one of the children. We celebrated Mother’s Day as well as Children’s Sunday today. Children’s Sunday represents the close of the Sunday school year and it is a celebration and recognition of what the children in our church have accomplished throughout the school year. The handing out of the flowers has been occurring for a few years now. I remember the first year the flowers were presented on Mother’s Day. Before the children came out to present them both that year and this year, my minister prefaced this beautiful gesture by telling the congregation the flowers would be given to those of us in church that “look like a mother.” I remember sitting in the pew that very first year and thinking how difficult it was going to be for me when the children bypassed me and I was left without a flower. Left with an outward sign of who I am not. A mother.

But miracle of all miracles, I received a flower that year and I have received one every Mother’s Day since. All the women in our congregation do; because even if we have never given birth, adopted, or raised a child of our own, we all have in some way mothered a child or another human being. The flower is a symbol for the mother that lies within us.

Mother’s Day has notoriously been a very difficult day for me over the years. Correction: I have made it a difficult day for myself. The reason is simple. I love children, have always wanted some, or at least one, and have never had a child of my own. The reasons are numerous and complicated. I know it is something that I will eventually write many essays about but for today, writing about Mother’s Day is enough.

As the years have gone by, I have struggled with Mother’s Day because I have always focused on what I did not have and that is: a child of my own. One that I can raise, nurture, and love. As the day would approach and come to slap me in the face with my reality, I would dread it. Because I knew that most likely, I would never have the opportunity to be celebrated on that one special day each year. I would never possess that which is known to most of our society as the ultimate bond between two people: the bond between a mother and her child. It can be quite a difficult thing to live with in our culture and society where being a parent is given the utmost priority and acceptance. It can be quite a difficult thing to live with period. Sometimes you feel like you don’t fit with the rest of the world. Sometimes you just feel plain old sad. But those are topics for another day as well.

Luckily though, my thinking about this issue has evolved over the past year or so. And it has not come easily. Changing my thinking about going through Mother’s Day with no children has taken a lot of soul searching and yes, even some acceptance. It is not because I like children any less. But rather because I am more focused on what I do have rather than what I do not have. To start with, I have my own incredible mother. One that has nurtured me and supported me my entire life and whom I would probably be lost in life without. I do not want to waste precious time feeling sorry for myself on Mother’s Day when I could spend that time honoring and thinking about my own mother. And there is my fiance’s mother. How grateful am I for her? The person that brought the love of my life into existence. The man who has completely changed my life.

Most women in my life, whether they are friends or family, are mothers. I have been blessed by the grace of God to know them and to witness the everyday struggles, challenges, joys, and blessings that come with raising a child. To be honest, I do not think that every mother is a great one or even a good one. But in my circle, they are. So on this day, I honor them in my heart. I feel lucky to be a part of their lives.

What I have also come to realize, similar to how my church treats the women in our congregation on Mother’s Day, is that being a mother is not just about having a child of your own. It is about how we, as women, nurture and support the children in our lives whether it is in our own family or in our community. I now can stop and think of the times I have nurtured other people’s children. I have cared for, nurtured, and loved nephews, future adult stepchildren, goddaughters, and children of friends closest to me. I have supported the children in my congregation in their endeavors and activities. I have been a mother to every single pediatric patient I have ever taken care of by holding their hand, disciplining them, and singing to them in the middle of the night when they were scared or in pain.

I have been present.

Is it the same thing as raising a child of your own twenty-four hours a day? No, it is not the same. But I do not think that fact makes it any less important, or any more important for that matter. It just makes it different.

I am not living in denial of the difficulties associated with losing a part of my life’s dream. Now though, I try to not let it define me by who I am as a woman. From this Mother’s Day on, I refuse to let it overshadow what this day is supposed to be about and that is love. So Happy Mother’s Day to all of the women in my life who are mothers. Those who have:

Given birth to a child,
Adopted a child,
Raised a child,
Encouraged a child,
Been a role model for a child,
Helped a child,
Loved a child….
You are all truly my inspiration.
Photo Courtesy of Chuck Myers

Leaving Forty

Every year on your birthday, you get a chance to start new. ~ Sammy Hagar

Tomorrow I am leaving my fortieth year. It seemed like just yesterday I was writing about turning forty in a blog entry (Turning Forty) and how significant that event was to me. It was a great birthday accompanied by a super fantastic surprise party with my family and friends. My impending birthday tomorrow has left me reflecting on the past year. One of the things I wrote about in the Turning Forty essay was about how birthdays are a way to celebrate our lives and how they are also a chance to say “Yes, I have gotten here.”

In many ways, I have not quite ended up where I thought I would be by the time I turned forty-one. I had anticipated that the past year would lead to a significant improvement in my health as well as a return to the work force as a registered nurse. I had plans for having one of my essays published in print. I wanted to lose a ton of weight. Like I stated in the previous essay: Ahh, the best laid plans. Maybe that is why we shouldn’t make so many of them, right?

My autoimmune illness got worse rather than better. I was diagnosed with two life threatening illnesses within a span of ten days earlier this year, both of which I have recovered fully from. At least physically. The threat of what “could have happened” still lingers in my memory. I know, I really need to get over that. Although both illnesses were not lifestyle related, I hit rock bottom with the exhaustion of dealing with illness and being sick all the time. I found a way to cope with that. I took more control over my body and health by changing several aspects of my lifestyle including changing my diet, getting exercise, and reducing stress. I made a big commitment to being a healthier person.

I lost a lot of connections with some friends over this past year for a variety of reasons. I made a few new ones. In the process of both, I learned the value of quality over quantity and the importance of selecting my friends with care. As I continue to get older, I become more astutely aware of the significance that these relationships have for me and that sometimes these relationships are ever changing, just like the rest of the world is so much of the time.

In my fortieth year, I took a few risks. One of those was committing to marry the love of my life, A bold move for me because it has meant placing my complete trust in a partner. And finding out that when you are with the right partner, that trust will not be broken. I have learned over my past year with him about what it takes for a relationship to survive the darkest of hours in order to be able to travel the same path together for a lifetime.

Although when I turned forty, I felt like I had already learned the importance of living each day like it was a privilege, this past year has taught me the importance of prioritizing each of those days:

That cleaning the bathroom is not as important as spending time on the phone with a loved one.

That washing the dishes in the sink is not as important as hanging out with my fiance.

That returning emails is not as important as getting my work out done.

Although my birthday tomorrow will be much more low key than when I turned the big 4-0, I am looking forward to it. I have much to celebrate and be thankful for. The most important thing I have to celebrate and be thankful for is the fact that I get to keep going on this crazy journey which is otherwise known as my life. I am still alive. I get to experience more joy, more hugs, more tears, and more laughs. Tomorrow I get to sit back and say once again, “Yes, I have gotten here.” And like last year, I once again have the opportunity to realize even more of my hopes and dreams in the next year of my life.

I really could not ask for more.

Photo Courtesy of Chuck Myers

Waterworld

“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.

Nirvana!

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

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

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