Thursday, September 30, 2010


"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.

Monday, September 27, 2010


"Be aware of wonder. Live a balanced life - learn some and think some and draw and paint and sing and dance and play and work every day some." ~ Robert Fulgham

I have tried several times today to get down the topic I wanted to blog about. I had a lot of ideas, but nothing seemed to develop from those ideas. I definitely had things I wanted to say; that’s how it usually is. My mind just becomes consumed with all these ideas and how I want to develop them. For some people who write, it’s a fiction story of some sorts that they want to get out on the page. For me, it’s my ideas about people and life in general. But sometimes there are so many, they all get jumbled up and I can’t focus on a particular topic. Then I just decided to start writing and not worry about a topic and sure enough, I realized that the topic I needed to write about was: balance. Funny part is: I was going to write about balance about a week ago and then I got so busy and well, out of balance that I forgot about it!

I don’t mean that being out of balance is always necessarily related to bad events in my life, although most of the time that is the case. Actually my being out of balance lately has been more related to good things in my life; with the exception of some medical issues with my dog and some autoimmune medication issues for myself. However knowing myself as well as I do, I am cautious about making sure that I never go too long being out of balance. I spent a long time living like that and to be honest, it is stressful and miserable…a place that I will do whatever it takes to stay out of. I firmly believe that being out of balance for long periods of time is a major contributor to anxiety, depression, and physical health issues. Knowing that stress can contribute to autoimmune disorders makes me even more vigilant about it.

So what does being out of balance mean for me? It means feeling stressed at times and not centered. It means anxiety. It means feeling physically tense. I know this is all part of life and I am good with doing this for a certain period of time, but then at some point I have to stop myself and think about if I have done anything recently (for me recently has to be within the past week or so) to really care for my body and my spirit.

Everyone has different things that make them feel more balanced personally. I realized over the past two days two necessary things that help keep me balanced. They are actually more but these are the two that I physically do to help center me. I realized what they were because I had not done them for at least a week and when I did do them, the difference was noticeable. What I did in my life before I discovered them, I don’t know. The first is writing. I only started to write on a regular basis maybe about five months ago but since I have started, it has become such a passion that there is not only a WANT to write but a NEED to write. Most of the time, I am not really even caring if anyone else reads what I write. If I don’t write regularly, I am out of balance. It focuses me, it soothes me, and it energizes me. I guess that is what having a passion is all about!

The second thing that balances me is something that I never thought in a million years would be such a big deal for me and that is walking. I have never been a huge fan of exercise in general. I have done my spurts of joining a gym in an effort to lose weight and be healthier, but it never stuck. Then I got sick with this whole autoimmune business. That meant a lot of joint pain, breathing difficulties, and time spent in the house, hospital and/or in bed. All of a sudden I began to appreciate the feeling of moving my body when I could because my physical activity was so limited for periods of time. I also began to crave being outside, no matter what the weather. On top of it, I have a psycho dog with severe separation anxiety which is much more manageable with regular exercise, so walking became a part of my everyday routine as much as I physically could do it. What I came to realize is that the walking and fresh air, no matter what the pace (and trust me, sometimes it’s a pathetic pace!), was not only good for me physically, but also became an incredible coping skill for keeping me in balance.

So when the world is all crazy and hectic around you, how do you find your balance?

Thursday, September 9, 2010

Living Fully

“The value of life lies not in the length of days, but in the use we make of them; a man may live long yet live very little.” ~ Montaigne

I attended a wake last night; my first one in quite a while actually. It was for the grandmother of a dear friend of mine who I met in freshman college English class at UMASS. Nana was 93 years old when she died and had lived a full and vital life according to my friend Lauren. I had only met Nana a few times in my life, the most recent being so long ago I could not remember when it took place. However Lauren and I go back twenty-one years and I know her Nana meant a lot to her, so I make the trip to Boston’s North Shore to pay my respects to my longtime friend and her family.

It was one of those wakes where although people were understandably sad about their loss, there was also a lot of laughter and great memories. There were many significant and candid photos surrounding the funeral parlor room and it was obvious from the words exchanged and the sounds of laughter, that Nana and her family are very loved. I don’t know if it was because she had lived such a full life and/or because the disposition of the family and friends that were present; but it seemed that she was being celebrated as much as she was being mourned.

Because of the length of the drive from my home to the wake and the wonderful joy of rush hour traffic around Boston, I had a lot of time in the car to think about what it would be like to live to such a grand age of 93 years old. Nana sure packed a lot of living into those 93 years. It also made me think: how many of us pack as much living into each day as we can? Do we truly live each day to the fullest or do we let ourselves get stuck in a rut of the mundane? Of course with the demands of work, children, aging parents, and overall life stress/chaos, we cannot always have happy-go-lucky days. That does not mean that we cannot have full days though. Do we really try to get the most out of each day that is presented to us whether it be spending the day cleaning our house so we feel better about our surroundings or even spending a day at the park with our children, making lasting memories? Do we throw ourselves into our jobs with passion and vigor? Do we share ourselves every day with the ones that we love?

I also got to think about my own life situation and how I try to live each day as fully as I can. I have been blessed in the past two weeks to have my health significantly improve because of some recent medication changes. Although I have been often labeled an idealist, I am also very much a realist. Because these medication changes are still happening and my health is so unpredictable, I know I won’t feel like this permanently, without further episodes. What I do know is this: I have used the past two weeks as an opportunity to live as fully as I can because I know when those really bad days come back, I will be much more limited in what I can do. So I have pushed myself hard to get out and do more of the things I love to do; get things done around my apartment that have been neglected for months; have as much fun as possible; catch up on projects; and get more exercise and time outside. Now when those bad days do come back, it doesn’t mean I can’t live those days as fully as I can. However it does mean that I will be living them fully in a different type of way. So my hope for everyone who reads this is that you try to live each day as fully as you can so that like Nana, you too can be remembered with fond memories and laughter.

Thursday, September 2, 2010

Looks Can Be Deceiving

I am not a big television fan lately, but I am completely hooked on this show called “What Would You Do?” I don’t know if you have watched it, but basically ABC sets up situations with actors and cameras to see what real life people will do when faced with real life uncomfortable situations. They present all different types of moral dilemmas and then we get to see the unsuspecting victims of the scenarios either rise to the occasion of advocating for their fellow man or fail miserably, which they then try to explain their way out of to host John Quinones.

So recently, there was an episode that depicted two female actors, who were maybe in their twenties, parked in a handicapped parking spot. They did not have the required handicap plate/tag and the theory behind it was that neither one of them was disabled, therefore illegally using the spot. Then someone needing that handicap spot pulls in and has nowhere to park. The woman needing the spot asks them to move their car but the girls refuse. Of course ABC plays this all up by having the girls in the car sitting there and acting like they are having a grand old time. The rest of the scenario shows how people passing by either intervene in behalf of the disabled woman needing a spot or just go about their business, pretending they don’t see the situation unfolding. I was surprised to see how many strangers actually did intervene on behalf of the disabled woman.

One of the things that bothered me about this episode though was that as they were setting the scene, it was stated that the women in the car using the handicap space were clearly not disabled because of how they were presenting themselves. Now first, there is the issue that they did not have the required handicap plate/tag to use this parking spot. However if we take this fact out of the equation, how can we then assume that one of these women was not disabled? Were they basing that statement on the fact that they were young? That they had music playing a little loudly? Were they basing it on the fact that they looked “healthy?” I have to admit, I have been guilty in the past of passing judgement in this situation; wondering why a perfectly healthy looking individual would need to park in a handicapped spot.

Several months ago, a friend suggested to me that I apply for a handicap parking tag. I have intermittent episodes of difficulty with breathing and joint pain related to an autoimmune disorder; both of which can impair me to a point where functioning is very difficult at times. I had never thought of applying for a parking tag. The first thought that came to my mind was that having a handicap parking meant I was giving in to my illness. I was still coming to terms with the limitations that my autoimmune disorder put on my life and was not about to give this disease one more victory. I rationalized that I really didn’t need it because most of the time, I could manage getting from my car to my destination just fine. I was also worried what people would think. That was a fact I hated to admit because it’s very rare that I concern myself with people’s perception of me anymore. But there it was. I don’t use a wheelchair, cane, or any other assistive device and I was worried that people would think I was cheating the system by having a handicap parking tag. I mean come on, really?

However through discussion with my friend and my doctor, I came to realize that having a handicap parking tag would actually increase my ability to be more independent. It would make it easier to get to where I needed to go on those really bad days when I would sometimes have to rely on another person to get necessary items at a store. It wasn’t a matter of swallowing my pride, it was a matter of doing what I needed to do to maximize my capabilities. I would be empowering myself.

I did get the parking tag. I have gotten some looks (and even one overheard comment) when parking in a handicap spot on the rare occasion when I have had to use it. It seems like people do look at me and think to themselves “why does she need to park there…she looks healthy enough.” I wish I could make them understand that disability is not just defined by a wheelchair or a cane. Someone with a disability does not have to “look sick”. Disabilities can be physical, mental, or emotional. I think that we can never stop and assume that we know what another person is going through until we have walked a few steps in their shoes so to speak.

I am quite grateful to my friend for suggesting the handicap parking tag idea. It has given me more freedom and flexibility. It has allowed me to more fully enjoy events, such as my cousin’s college graduation, because I was not in as much pain as I would have been if I had to walk the ten minutes from the regular parking lot. Most importantly though, it has reminded me to be more open minded about other people’s struggles. So the next time you are driving around a crowded parking lot, exhausted from work, and just needing to get dinner at the supermarket and you observe a seemingly “health looking” individual emerging from a handicap parking spot, just remember: looks can be deceiving.