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

Category: obstacles (Page 2 of 2)

“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

Perseverance

“Perseverance is a positive, active characteristic. It is not idly, passively waiting and hoping for some good thing to happen. It gives us hope by helping us realize that the righteous suffer no failure except in giving up and no longer trying. We must never give up, regardless of temptations, frustrations, disappointments, or discouragements.” ~ Joseph P. Wirthlin

I had no intention of doing another blog entry this week; especially because I have other writing that I wanted to do. However it’s been one of those days where I need to write what’s first and foremost in my head and right now, that is the subject of perseverance.

I have had some significant medication changes lately for my autoimmune disorder. We can call it Sjogren’s Disease but the reality is, I don’t think anyone is particularly convinced that this disease is the sole diagnosis, even my doctor. That is the problem with autoimmune disorders; there are about eighty of them and accurate diagnosis for many of them is a joke at best. Many of us struggle for years, if not a whole lifetime switching from one diagnosis to another; oftentimes running around with several diagnoses at once. I am pretty sure that our rheumatologists get just as frustrated sometimes as we do with the merry-go-round of uncertainty and frustration, but the reality is that as patients, we live with it every single day of our lives-the uncertainty and the frustration.

Today was a particularly frustrating day because we had to come up with a new plan for my medications. The autoimmune stuff and meds have been a three ring circus (more so than usual) since the end of June. I think that typically, I handle this whole health issue thing pretty well and with a decent amount of dignity, but today was one of those days that I was just pretty damn sick of it. Sick of dealing with being poked, prodded, and asked the same questions over and over. Sick of explaining to people why I am not back at work. Sick of worrying and wondering which toxic medication will do me in first. I know it sounds like one giant bitch fest but it really wasn’t. I was just wishing for a day where my health issues did not play into my life at all.

Then as I was driving home, I was thinking about how my health was right before I started seeing this particular rheumatologist in December of 2008. At that point, I was so freaking sick and no one could figure out what was wrong with me. I really thought I was going to die. I was scared because I was getting sicker. I had terrible difficulty breathing, had lost some feeling in my feet from nerve involvement, and pain so bad that at points, if someone had offered me a gun, I probably would have taken it. Three rheumatologists told me I did not have an autoimmune related disorder and two primary care doctors threw their hands up in dismay. I saw more specialists than I could count. There were times I could not even take care of myself. On more than one occasion, I was told maybe it was in my head. I was even told that all I needed was a vacation. A vacation… really? How would you suggest I get myself there since I can’t stay out of the hospital??

Yes, today I know I am still not in an optimal place physically but the reality is: I am in a MUCH better place than I was in December 2008. The reason: I persevered. I researched, asked a lot of questions, did not take “I don’t know” for an answer. In desperation, I found a pain specialist who tried me on steroids for five days and we saw a miraculous transformation occur, most likely indicating an autoimmune disorder. Yet three other rheumatologists could not be bothered to try this before he did. So I found a rheumatologist (who was my fourth and current one) who knew what the hell he was doing and took me seriously.

According to Merriam-Webster, to persevere is defined as: to persist in or remain constant to a purpose, idea, or task in the face of obstacles or discouragement. I have a purpose: I’m going to kick this thing’s ass. Seriously. I was having a conversation with a friend several months ago about my health. My friend had the best of intentions, but she implied that I may have to accept that this is as good as it’s going to get. I had to disagree. Have I accepted that I have a chronic illness that will affect me the rest of my life? Yes…got that one loud and clear; although the acceptance thing did take some time. Have I accepted that I will probably never work in a hospital as a pediatric nurse in the capacity I worked before? Yeap, got that one loud and clear also. What I am not going to accept is that the way my body is functioning now is as good as it gets. Because once you do that, you’ve given up. You can have realistic expectations of yourself and adjust some of your life accordingly, but you never give up hope, never stop researching, never stop challenging your doctors, and never stop pushing yourself further than you thought you could go.

So as I was getting ready for bed tonight, I thought about how the past few months have just been obstacles in this journey towards better health. I realized that in the scheme of this fight, this doctor’s appointment today was not a big deal. I have persevered through much worse. I’m going to continue to fight the fight and not give up hope that at some point, this whole autoimmune thing will be under control on a regular basis. I will persist, hope and persevere. I will not accept any less.

Newer posts »