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

Category: perseverance (Page 2 of 3)

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

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

“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

Beaten Down and Other Musings

Fall seven times, stand up eight. ~Japanese Proverb

I know “beaten down” seems like a depressing entry for a blog title. And I also know that it is difficult for some of the people in my life, either who read my blog or follow me on Facebook, to read an onslaught of negative thoughts about what is going on with my medical issues. Heck, it is hard for ME to be in my own head sometimes lately or even to read a lot of negative thoughts on Facebook pages such as the Sjogren’s syndrome one that I follow. But I have promised myself to start being more honest in not only my writing, but also in my interactions with other people. So here we are. The thing is: when I write and am able to process my thoughts, my alter ego, the much stronger one also known as “the optimist” usually finds her way out. Bear with me.

Just as Chuck and I were starting to watch a movie at home last night, I leaned over to him and said “I just feel beaten down.” I wasn’t sure really what my problem was. My mood swings from the steroids had lessened just enough to make me think that I will make it through this course of treatment without continuing to cry or wanting to kill someone several times a day.

Not even joking about that one. I cannot believe people actually take that stuff for a non-medical reason!

But I had not been feeling like myself all day and feeling well, beaten down; maybe even overwhelmed from trying to process all the events of the past few weeks. After all, I had been diagnosed with two blood clots in my lungs, Guillain-Barre syndrome, and had a recent and exhausting trip to the emergency room just two days prior with severe head pain, nausea, and increased tremors. I was checked out for bleeding in my head and a blood clot to my brain which all turned out negative. On top of it, I was constantly trying to deal with insurance issues, disability issues, appointments, rude people on the other end of the phone, my computer crashing, getting what I needed medically from my health care team, the list goes on and on.

Chuck’s response to this big revelation I had last night was that of course I felt beaten down, who wouldn’t considering recent events in our lives as of late? He was not surprised by this at all. But I was. I am a fighter and I attack everything head on until I get to the other side. I know that. But as I thought about it some more, I realized that this feeling of being beaten down wasn’t about wanting to give up but rather to acknowledge and accept (there’s that word again!) where I am at during this given moment in time.

Physically my body is beaten down because it has been poked, prodded, and stuck with more needles in the past few weeks than it should ever have to see in its lifetime. It has endured countless sleepless nights and long days of appointments and tests. It is worn out. Worn out from behaving in a way it is not supposed to with its altered heart rates and blood pressures, tremors, weakness and, new pains that it is not used to. My body is trying, that is for sure. It is begging me to be good to it with the food I put in it and the care I give to the massive bruises and hematomas that litter my body from my legs to my belly to my arms. Sometimes I feel like it is screaming out to me to just stop all the invasiveness that the others inflict on it and just let it be. I want to do that; to let it be. But I tried to let my body do its own job and it could not.

My body wants to feel pretty again. Sure, I was never a supermodel to begin with and my body is actually a lot lighter than it used to be, but it does not feel pretty. It feels disfigured from the bruises and the rashes. From the hair that is starting to fall out from the steroids and the often pale, makeup less face that stares back at me in the mirror….the darkened eyes that used to be so much more vibrant. My body does not understand that it is an effort to get it clean every day right now and everything else is not as significant. Maybe that is where I go wrong because really, a little concealer is not that much effort is it? Even though I am angry at my body for betraying me so much lately, maybe seeing lighter eyes with less dark circles underneath them in the reflection of the mirror will make me less angry with my body for its obvious betrayal.

I love the Nathan’s hot dog competition. At least I am not doing this to my body!!

Feeling beaten down is not just physical but emotional and mental as well. The act of processing a lot of events while trying to maintain some shred of normalcy, routine and self respect is difficult at best. It doesn’t matter if it is related to having a chronic illness like I have or any other issues such as divorce, abuse, loss of a career, loss of a love, or loss of yourself. Fear of the unknown fills your head.

I will admit, I am scared. I am freaking scared to death. I don’t think I fully realized how much until yesterday. I am afraid of what the results from another MRI will show this week. I am scared of going for a neurological procedure (EMG) that I know for a fact will be painful. I am scared of the results; whether they will be bad or whether there will be any results at all which could help define what exactly is going on and how we are going to take care of the problem.

I am scared because I know my body is not acting right and I fear that it will not get back to where it was even just two months ago. Will I ever be able to do an activity again for more than ten or fifteen minutes without needing to sit or lie down? Will I ever be able to stoop down again without falling over or needing help to get up? Will I ever be able to shower and wash my hair again without it being this epic event that exhausts me and makes me shake? I know since I have Sjogren’s syndrome, my body will never exactly be the way it used to be, but will my body ever get back to where it was several months ago?

And as my fears consume me, I think back. To other difficult times and to all the other struggles and questions I had during those times. Maybe like we all do, I have learned from prior experiences. When I had a severe heart arrhythmia (before having surgery to correct it), I questioned if I could even get through a day without a heart episode. I questioned whether I could make it a month without an emergency room visit. When I had cancer in my mid-twenties, I questioned whether I was going be able to endure the treatments, if I was going to get married. I questioned whether or not I would live to see my twenty-fifth birthday.

All of those questions were answered. And I saw my twenty-fifth birthday, as well as my fortieth. I got through it.

So for now, I will accept the fact that it is all right to feel beaten down; to allow my body to go through that process. It means I am down, but I certainly not out.

I will have faith.
I will trust in God to see me through.

I was sitting in church this morning and looking around at the various people scattering the pews and wondering how many of them were feeling beaten down right at this moment? Or wondering how many of them had maybe felt beaten down at a different time in their lives? A time where some things did not make sense or that they felt they had endured more than their fair share of beatings so to speak. I don’t have to know all of their stories to know that those stories are there in some form or another. Tales of survival. Tales of people who became stronger and more compassionate people because of what they had to endure . Journeys that were easier than mine and definitely journeys that were more difficult than mine.

People who were beaten down but yet rose up.

Again.

And again.

And again.

Just like I will.

Photos: Courtesy of Google Images

The Eye of the Tiger: Guest Blog by Chuck Myers

It was perhaps a month ago that Chris asked me if I’d be interested in being a “guest blogger” on her site. Having a huge ego, I of course agreed, as her followers have grown exponentially this year! (Of course, I only agreed if I could post it without any edits, as well!) I’ve been tossing around a few ideas in my head since that time, but the events of the past few weeks have led me to settle on this one…

Tigers…they’ve fascinated me ever since before I can remember. A stuffed vinyl tiger was one of my first toys, and I still have it today (Thanks Mom!). They’re the animal I want to see when I visit a zoo, and I have one on my right arm. It’s one of my dreams to be able to actually touch one some day; just to feel the aura of an animal that some cultures believe has magical or supernatural powers.

If you look up tigers as a zodiac symbol, you’ll find a huge amount of information, and while the Internet can provide you with nearly as much misinformation as accurate information, there are some traits that are present on almost every site you find.

Tigers are somewhat unpredictable, passionate in their relationships, and capable of great generosity.  They are symbols of strength, tenacity, and bravery.

Chris is my tiger.

Certainly, she is sometimes unpredictable, and I think that’s a wonderful thing in a relationship. I don’t think there’s anything worse for a relationship than predictability.  Of course I believe that you need to be able to count on your partner, but knowing just what’s going to happen all of the time leads to the kind of ennui that will kill your relationship.

Passionate…Chris is passionate about everyone she connects with, and sometimes too much so.  It’s a wonderful thing for family, though, as well as for the projects and causes she takes on.

But it’s the strength, tenacity and bravery that really sing to me when I think of Christine.

It takes a lot of strength to not only face this autoimmune disorder she’s saddled with, but to fight it through any and all means available to her.  She has fought it (and continues to fight it) with traditional western medicine, and a plethora of physicians in all specialties.  She fights it with eastern medicine, and what many call alternative methods, such as acupuncture and massage. She fights it with what some people might call drastic dietary changes, exercise when possible, and adapting her lifestyle so that she can continue to be the person that she is.  It takes a strong person to hear “no” a thousand times, and persevere.  It takes strength not only to deal with the disorder, but the treatment.  It takes strength to fight the swings that the medications attempt to impose on your moods, so that you don’t hurt the ones you love.

Tenacity…You can’t even begin to doubt it in Chris.  It takes a tenacious personality to work their way through the medical system we have in this country, to try to find the right people to help you.  Five rheumatologists, three eye doctors, unknown numbers of primary care practitioners, ob-gyns, and emergency room physicians head the list. It takes long hours driving to Boston, Springfield, and Hartford to see the right people; people that might know something about this little-known disorder.

It takes tenacity to wade through the morass of bureaucracy that tries to keep you from getting the help you need, including insurance companies, health insurers, and state and federal agencies.

Bravery?  I haven’t met too many people who can outdo her in this department.  Through the myriad of symptoms, she keeps fighting to maintain her relationships, and to keep doing the things she deems important to keep her the person that she is.  The symptoms that appear she meets head on, and develops plans to deal with them.  She fights this thing with everything she’s got, and then some.

Then of course, there are the little things, like injecting herself in her abdomen.  I may be a lot bigger than she is, but she’s a lot braver!

Strength…Tenacity…Bravery…all great things!

But the best thing about tigers…They’re cats…They always land on their feet.

Chris is my tiger, and I know that she’ll do the same!

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