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Monthly Archives: March 2010

Persevering through chronic illness means having an open mind


Living with a chronic condition is like carrying around a giant weight on your shoulders on daily basis. Furthermore, regardless of the type of condition you have, you will have to slow down and make lifestyle changes in order to carry that weight around. The problem with living with a chronic condition is that you find yourself traveling through a complicated maze where there are more questions than answers and finding your way requires patience, dedication and endurance.

My journey with chronic illness started in the mid to late 1990s even through I did not receive a diagnosis for the havoc going on inside of me until two years ago. The pain become daily and it has altered my life. The days got more challenging and I had to change courses because even though I was going one way, my conditions were sending me another. For me, healing was more than just a physical component and I have been left a variety of emotions as a result. Fear, denial, optimism, frustration, numbness, and skepticism all come to into play when dealing with the maze of chronic illness. In the end, I found that an open mind is the only way to persevere.

The wake up call does not come when you are looking answers but in fact, after you have found them. If you cannot keep an open mind, you are going to be yourself losing a difficult battle that ends before it even starts. On a daily basis, an open mind means finding new and creative ways to adapt your condition to your life. It may involve things like a less strenuous exercise routine or physical therapy regimen, figuring what foods aggravate or lessen your symptoms, changing your work schedule or your work environment, and recognizing that there are different approaches to accomplishing health and lifestyle goals.

You should also keep an open mind about your healthcare options. Further, researching your conditions and finding support and answers with people who know and understand what you are going through will give you a map for getting through the maze that has now become your life.

Not having an open mind will only make you miserable and it is not a trap you want to fall into. Having open mind involves avoiding the following:

• Not being critical of yourself. You cannot control what has happened nor can you turn back time. You will never be able to do things the way you did before so do yourself a favor and let go of the sadness and anger and focus on feeling better.
• Trying to control things you cannot control. Control what you can: your feelings and your emotions, your lifestyle, and your healthcare options.
• Being emotionless. Humor and gratitude go a long way. These things play an important role in the healing process and not having them will only pull you down.
• Not taking time for yourself. You come first and not putting yourself first will only make you miserable. Do everyone else around you a favor and avoid this misery making process.
• Not taking responsibility for your healthcare. I have said this repeatedly. Be your own advocate because no one else is going to do this for you. Find out all you can about your condition including treatments and the latest research.
• Dwelling. You can choose to dwell day in and day out but the only thing that will accomplish is make you miserable and everyone else around you. Personally, I take the “it’s okay to have a quick and once in a while pity party, but get over it quick” approach.
• Isolating yourself. Find support and the internet is a great place for that. Connecting with online support groups and others who understand your struggles will keep you sane.
• Not imagining future. Keep looking to the future no matter what. Think about the things and the people that matter to you and keep looking up. Michael J. Fox wrote an amazing book about looking up and it is advice to heed.

“My happiness grows in direct proportion to my acceptance, and in inverse proportion to my expectations.” — Michael J. Fox
“When prescribing one of the drugs I take, my doctor warned me of a common side effect: exaggerated, intensely vivid dreams. To be honest, I’ve never really noticed the difference. I’ve always dreamt big.”— Michael J. Fox

For me, I have spent a lot of time being sick, but a lot less time dwelling. I am not saying that it wasn’t easy, but once I realized that acceptance was the only way to live a normal life, I accepted my conditions in my life and learned to live with them and not against them. I also learned that an open mind was my only defense because living with a chronic illness impacts one’s physical, psychological, emotional, and spiritual wellbeing. It causes person to feel helpless and hopeless. It can devastate a career and ruin financial security. It can also ruin relationships and one’s peace of mind. Keeping an open mind is important in the short-term and the long-term. It will keep you active, social and productive – not to mention sane. Chronic illness may close some doors for us but it will also open others as I am slowly learning.  It might even to take you to places you never thought it would.

“The art of healing comes from nature, not from the physician. Therefore the physician must start from nature, with an open mind.” Philipus Aureolus Paracelsus
“The open mind never acts: when we have done our utmost to arrive at a reasonable conclusion, we still – must close our minds for the moment with a snap, and act dogmatically on our conclusions” George Bernard Shaw

 
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Posted by on March 16, 2010 in Chronic illnesses, rheumatoid arthritis

 

I really can find things to do



I know I promised I would not blog but I just wanted to check in and say that I have had an interesting few days. I have been spending a lot of time with my kids and just taking advantage of the opportunity to have fun. I had done of a good job of staying away from my computer, not blogging as much, and really, the only time I have spent on the computer, was doing advocacy work over at Arthritis Connect. If you have not checked out Arthritis Connect, please take a moment to do so. You will find a lot of information and support about the variety of arthritis conditions out there.

Today my kids and I joined my friend Rhonda and her grown son at the Rainforest which is part of the Cleveland Metroparks Zoo. The boys had a blast and even the baby had a good time. Elliott was mesmerized by the variety of monkeys and the orangutans. He also was intrigued the bigger lizards, snakes and fish. He could have just stayed there for hours staring at the crocodiles and alligators. He stood right in front of a huge alligator tank and watched the alligators and the big turtles (I do not recall the exact names) in awe. I forgot my digital camera at home but I managed to snap a few on my cell phone. The quality is not great because the rainforest is not very well lit and the photos are only cell phone quality.

I wish I had more time on my hands to spend time with my boys but having children means you do have to work hard. I know that is just a part of it and part of giving them a good life but it does not mean that I do not spend a lot of time missing them. I watched my friend Rhonda with her grown son who is 24 and I was reminded how fast it will go. It is heartbreaking when you realize that your role in their lives gets smaller and smaller as they grow older and how they turn out reflects upon you.

This morning before I left the house, I read my horoscope and I realized how quickly things change. My ten year old is going to NYC to visit his aunt during spring break. He will be gone for a week and it will be the longest week of my life. They really do grow up so fast.

My horoscope for today:
Do you often act on the basis of the idea that world is static and that nothing really changes, Lana? Sometimes you may think to yourself, “Mankind is like this, this is how the world is, and so, this is what I am going to do.” Have you ever heard of evolution? Mankind is in constant evolution and so is the world. Look around you!

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Posted by on March 13, 2010 in Motherhood

 

I am not allowed to blog for the next two weeks


Last night, I finished up my final paper in my master’s Jurisprudence and Legal History course which means I am free for the next two weeks until my new course starts. Therefore, at the request of my ten year old, I am required to blog less (and not about him, per his instructions), I am only allowed an hour in the evening at my computer, and I am too spend time with my children, enjoy the outdoors, and to enjoy my freedom. He even made me sign a contract. Kids today, but you know, he has the right idea. I spend so much time being busy that I forget what means to have fun.

As adults, I think we often lose sight of what it means to have fun or to just take a break from life. We spend so much time working hard and being adults that life manages to pass us by. Always trying to be responsible makes us forgot what we were doing in the first place. We have become a generation of workaholics without even realizing it. These days, it is all about getting a pay check and not necessarily enjoying what we do or taking the time to realize what the big picture is.

My life is busy and there is no question that I am constantly rushing through my life and constantly thinking about what I will do next, for how long, and what about after that, etc. My mind is constantly on and even when I am resting or driving, I am thinking about bills, responsibilities, my children, my marriage, my mother, my blog, my conditions – everything and anything. Granted, RA and FMS have slowed me down physically but it doesn’t mean my mind has slowed down (not that I would want it to – I like being smart).

Our society is constantly running and rushing. We have alarms, clocks, timetables, calendars, and deadlines. Our schedules are filled with appointments and activities that we could probably do without. When you go out for a walk, you notice how fast people are moving and rushing. For some reason, the need for speed is embedded in our society and slowing down isn’t an option. Our lives are like the fast forward button on our VCRs and now with the DVD in place, we can skip parts of our lives like making time to just rest and reflect.

My ten year old has the right idea. Leave it to a tween boy to tell me that I don’t know how to live my own life. For the next couple of weeks, I will try not to blog but rest assured, I will check in with a blog post or two. I don’t want to be in violation of my contract.

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Posted by on March 10, 2010 in Motherhood

 

I am hurting


The last couple of days have been grueling for me dealing with a suicidal toddler in addition to pain that has hit new realms. My wrists, my hand and fingers, knees, ankles and feet are very swollen and it is not the usual pain, it is new and it is more like a feeling that I am being poked with needles in addition to the pain of swelling. I also get sharp pains and prangs in my sides, my ribcage, and chest (mostly my left side – starting from my shoulder down to my lower back) so it is muscle pain.

For the longest time, I believed that with medication my pain would not get worse, but a part of me was living in denial and understood that the pain would in fact get much worse. When I was first diagnosed, that was the most important question I had. Would things get worse? Unfortunately, as far as the medical community is concerned, that question is one they beat around the bush about. I knew the answers given to me were not accurate so I asked those who lived with the condition for quite some time. I was told yes, it would get worse. Would you believe I spent a lot of time researching this question and I never found the answer until I asked sufferers? Those words gave me a better understanding of what I should prepare myself for so as much as I am feeling down about the increase of pain, I was already prepared. Not finding answers within the medical community is an area that leaves sufferers struggling to make sense of everything on their own and I think that this is very unfortunate but reminds me how important advocating for myself is.

For the last two years, I had specific kind of pain that I learned to work with, and now, it is time to do some reassessing of my condition. I have also spent a lot of time educating myself and preparing for the worst should it come to that. I have to remind myself that even though my diagnoses happened a couple years ago, I was in pain for the ten years prior so my conditions are more far along than I would like them to be. However, I always keep my expectations high and I continue to plan for the future whatever it may hold. For one, I am halfway through completing my master’s degree. I only went back to college in 2000 when I was 24 and I started small with my associates in legal studies and now, my goal is a master’s in legal studies. Do I think my conditions limit and hinder my success? Of course, they do, but living with chronic pain every day of your life is bigger challenge than working a fulltime job, going to school part-time, playing an advocacy role and being a parent. The pain is an enemy that I fight everyday but the rest is what keeps me fighting.

 Last night, I lied awake in bed staring at the ceiling and wondering how much more life could throw at me. It seems like I am always running in multiple directions and I don’t rest until my head hits the pillow. Most days, I don’t realize how bad I am hurting until I stop and rest. It makes me sad sometimes, but I understand how much my attitude reflects upon my own life and the lives of those I love. If anything, my attitude gives me strength when I feel like I am at the end of my rope.

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Posted by on March 9, 2010 in Fibromyaloga, rheumatoid arthritis

 

Questions???



We went to see the orthopedic doctor to see whether Elliott would need a cast for his elbow fracture. I am still walking around with the invisible “crabby parent” label taped to my forehead because well, I put it there. I question everything I do and everything I am. I have learned that questioning myself is a good because it forces to get better answers or better ways of doing things. That is just who I am.

Lately, there has been a lot I have been questioning. One question is particular is whether my current rheumatologist has my best interest in mind. I am constantly explaining to her that I am not sure the current medication I am taking for my fibromyalgia is working for me and that I am ready to try something different, but she doesn’t seem to be listening. The other issue I have been bugging her about the fact that a year later on plaqenil my eyes are bothering me. Her response: “call an eye specialist.” I want to be off the plaqenil but since I cannot just get off the medication without my doctor’s approval so I did the next best thing, I made an appointment with a new rheumy whom I will be seeing at the end of the month. I am not going to take no for answer because there are always better answers. We just have to be willing to look for them.

Like the next person, I hate change but without questioning things, people would not be able to think for themselves or to make change happen. It was philosopher Descartes that said that we should question everything. Another great philosophical mind Socrates said we should call everything into question. Descartes also believed that we should think for ourselves and placed a huge importance on that belief. Socrates is often criticized for his views as many feel that they come out ignorance. The reason is that Socrates felt that we should still rely on the views of others who are wiser than we are. (Apparently, Socrates does not think we are capable of finding answers.) The view does not allow persons to think for themselves and to find answers for themselves so it contradicts Descartes’ view that we should think for ourselves and find answers.

All my life, I have asked questions. From the moment I could speak, I asked why. It drove my parents and my teachers crazy. When adults didn’t have the answers, I looked for them myself. I never stopped asking questions and looking for answers and it worked out well, as I had to when it came to my health. I am not the type of person who simply takes an answer just because it is given. What is weird is that I think that I have met my match in my children. They ask questions, have opinions, and they don’t always take the answer they are given to be true.

So, the question I have is how did my precious little angel turn into a suicidal elf? Five minutes after we walked in the door with the new cast, my toddler climbed up on the coffee table and went for the gold as the if the blue cast on his entire left arm was only a bronze medal. Seven years ago, I thought I put the suicidal toddler years behind me. I only stopped counting grey hairs three years ago. Now, I am reliving what I thought I put behind me. It is time to add more light in my bathroom and start counting the grey ones. I also hate to admit it but my mom was right when she told me that climbing and jumping off high places (the garage and several trees) would break my bones. I had many broken bones as a tomboyish little girl and wore my share of casts, splits, and Band-Aids. I suppose the apple doesn’t fall too far from the tree.

I will try very hard to not kill myself in fear and guilt because I am raising boys. It is not going to be easy, but if all else fails, I can babysit for my sister. She has three boys, ages 16, 14 and 13, and guess what, many broken bones later, they are still alive.

 
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Posted by on March 8, 2010 in Motherhood, toddlers

 

Sometimes, parenting sucks . . .


I love being a mother. In fact, of all the roles I play my life, it is my most favorite and I would not trade it for anything in the world. With that said, it is also the hardest job I have. Having a child means a lifetime of worry and as my friend Ava’s mom always says, “It is a life sentence without parole.”

Being a mother to me is a privilege and one that I don’t always feel worthy or deserving of. Still, I am honored to be given such a privilege even though sometimes, it feels like I am not capable or even worthy. You are probably wondering why this woman is acting like an insane lunatic but I have spent most of the evening feeling guilty because my eighteen month old decided to make an attempt to climb out of his crib, fell, and broke his elbow. I didn’t know it was serious until after I realized he was not lifting his arm when he was playing.

I took him to the emergency room, spent two hours there, and the x-rays showed an elbow fracture. After I went through the “why me” and “don’t I ever get a break” routine, the guilt turned into the “I am a crappy parent” routine. I know what happened wasn’t my fault because toddlers never can sit still, but considering I know what pain feels like, I had to hate for myself for what happened.

Well, little Elliott has a temporary splint until Monday when we see the orthopedic specialist, but it does not mean I feel less guilty or less of a crappy parent. For once, I am not feeling sorry for myself; I am feeling sorry for my kids. And yes, even after the fall and the splint, he was still running wild and causing trouble like nothing happened.

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Posted by on March 7, 2010 in Motherhood

 

I have been thinking . . .


Yesterday as I drove home from work, I started to think about this coldness and numbness that I have developed on an emotional level. I often question how I became this way and I know it is not just because of having fibromyalgia and rheumatoid arthritis and living with pain nearly every day of my life. This new cold and numb me only recently came out within the last year or so. Quite often, I am impatient and curt without even realizing it. In the past, I was always polite and apologetic when I found myself even a bit hurtful or mean. These days, I just don’t want anyone to get in my way. It seems like I am running a hundred miles per hour and I expect everyone around me to do the same thing. There are times where I have to be told that I have overreacted or I have handled a matter in a not so polite manner before I realize I have done it. Granted, it is not intentional on my part as I am not mean or impolite person.

I read this article about a research study done by the Mayo Clinic in Rochester, Minn. that found that people with rheumatoid arthritis appear to age faster than those without the disease which gives an explanation as to why people who suffer from the condition have shorter life spans. In addition to the five grey hairs I recently found (I am only 34), I just found out that because of RA, cells affected by the disease show signs of what’s called accelerated aging. This is damage at the molecular level. The researchers concluded that for every 10 years of chronological aging, people with RA physically age 11.4 years. Okay, maybe I am being bit a dramatic, but it was just one of those a-ha moments that made me realize that maybe life is too short and maybe, I have lost sight of who I am.

Like I said, it is not just the RA and the FMS that have changed me. It took two years of my common sense and patience to get out of the financial chaos that resulted when my husband made some bad investment decisions. I am not angry at my husband (I may have been in the beginning) because it could have gone either way. It is just that everything happened all at once – bad investments, a (surprise) pregnancy, and two medical diagnoses. All of these things sent me reeling in multiple directions and put my husband into a deep depression.

I obviously handled it better than my husband but I found myself angry and hurt. I went through all the “why me’s” and “what did I do to deserve this” routine over and over. The more I went through the routine, the more numb I became. I am not saying that I did not take action – I did. If I hadn’t, we would have lost our home and there were times where I wanted to walk away from my marriage because while I was picking up the pieces, my husband was pretending everything was normal. My husband and I have been together eight years and no one knows my husband better than I do, and to my husband, shutting things out, keeps him from falling apart. For me, distraction keeps me sane and in this case, distraction meant cleaning up the financial mess we were in.

Only recently has the chaos of my life calmed down, but coming out the wreckage, I can’t help but wonder how much I have changed and I wonder whether it is for better. I look at my children and wonder how much my diagnoses and my emotional state affect them. I know that children are more resilient than adults but sometimes, I wish that I could take back the last two years just so I can feel like they haven’t lost anything.

Mornings at my house are chaotic but this morning, I found my two little ones sleeping next to each other, my ten year old with his arm around his baby brother. They looked so peaceful and so beautiful that I did not want to wake them. I realized that this was my life and not the chaos outside my home – not my job, not my health, and not the outside world. For a moment, the world stood still and I loved it. Just for that moment, I forgot about the stresses of the morning – rushing out of the house, morning traffic on the way to my downtown job, and even the complexities of humanity – like war and earthquakes. For a moment, I remembered the most important role on play in this life – being a mother.

 
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Posted by on March 5, 2010 in Fibromyaloga, Motherhood, rheumatoid arthritis

 
 
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