Posted in Motherhood

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.

Posted in Fibromyaloga, Motherhood, rheumatoid arthritis

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.

Posted in rheumatoid arthritis

The Numbness

Yesterday,  I realized how easily and quickly RA pain and symptoms could change in a matter of hours. When morning came, I could not fully wake myself up and I felt extremely exhausted even though I had gotten about nine hours of sleep the previous night. The worst of it lasted for several hours. By the time I made it into work, my right and left wrists were inflamed, both palms of my hands were swollen, and my fingers were curling up. Needless to say, it took a lot of me to keep myself my together and even to do my job. The pain moved into my arms and my shoulders by around noon to a point where I can barely pick up a bunch of documents or lift my arms up and my shoulders felt like they were holding the weight of the world on them. It was even hard to keep a straight posture.

My ankles, my knees and my feet were swollen and inflamed by late afternoon and by the time five o’clock rolled around, my eyes felt like they were on fire and my body could give no more. I felt like I was pulling a 500 pound body into my car at the end of the workday.  By evening, every joint in my body was inflamed and filled with extreme pain.

If I had been able to keep it together all day, the toughness that consumed me for most of the day came to end by nine in the evening. I had handled all that I could handle and finally had my pity party, which was long overdue. I tried to convince myself that tomorrow would be better but the pain consumed me tremendously and I realized that I could not hold the tears back.  My kids were in bed by this point, but my husband knew it was time to start tip-toeing around me.  Little by little, chronic pain can take away vital parts of us – our kindness, our love and compassion, and the emotional part that makes us human. I go through the emotions every time the “bad days” come. It never gets easier, on us or on our loved ones.

Morning came and the worst of it was gone. Once the pain and the stiffness eased up, the numbness set in and the numbness has become the worst of it. The numbness is my control mechanism to keep everything together but it leaves me emotionless and sometimes, I try hard to feel something and I can’t. I start going through motions of life like robot without a thought, or feeling, or even any passion for what I am doing. No matter how much I hate it, the numbness consumes me to a point where all I can do is wish to feel something or some kind of emotion.

The numbness will soon pass, as did the majority of the pain. It is so hard when you feel nothing and your body responds like a robot. I do not really feel sorry myself, but I do feel sorry for my husband and my children that I miss out on time with them while I am feeling sorry for myself or while I am letting the numbness consume me. I once told my friend, Rhonda, that this numbness feels worse than being dead. I have since been careful to utter that aloud because as horrible as it feels, it cannot possibly be true.

Unless the pain hits “extreme” on my pain scale, I usually keep scurrying about my life. I really don’t have a choice and I have learned that the world doesn’t stop because I need it to. However, the numbness makes me feel less human and it takes away from me my passion for life. It, too, will soon pass, but as alone as I feel in those moments, I am pretty sure I am not alone in trying to make sense of it all.   Others struggling with chronic pain actually get it.

Posted in Fibromyaloga, rheumatoid arthritis, sleep

Chronic Pain and Sleep

The National Sleep Association reports that 2/3 of chronic pain sufferers experience sleep problems. The pain itself plays a factor as do chronic pain medications. Bedtime is supposed to be a time when we allow the distractions of the day to fade so we sleep and we relax. If you live with chronic pain, it is time where you finally realize how much pain you are in. The reason for the amplification of the pain is because your brain is not distracted by anything else. Thus, falling asleep is burdensome.

Day by day, a vicious cycle arises and sleep disturbances end up being an exacerbation of pain during the day and vice versa – you can no longer sleep because of the pain. Arthritis conditions and fibromyalgia pain are two major causes of sleep disruption. Interrupted sleep comes in the form of waking up several times at night, difficulty falling asleep, awakening too early in the morning, and non-refreshing sleep. Further, people with arthritis and fibromyalgia may experience restless leg syndrome, morning stiffness, extra pain and sleep apnea. Then, the lack of good quality sleep takes a toll the next day in the form of low energy and fatigue, depression, and pain. Reduction in energy jeopardizes a person’s safely, and this coming of experience, as I remember the days when I would nod off while driving.

In addition to medications and supplements for RA and FMS, I have made lifestyle changes to help myself get better quality sleep. It is not always easy especially with a busy life like mine, but day by day, it gets easier.

Saving my energy. I have learned to prioritize my life on a daily basis. There are days when I do not have a whole lot of energy so I do what is high priority and leave tasks that are less priority for when I am alert enough to focus on those.

Naps and resting periods. I usually try to take a power nap during the day (like during my lunch hour for about 20 to 30 minutes). If I can’t fall asleep, I just use it as resting period to clear my mind, and to not focus on the busyness of my life.

Changes in diet and being active. I am Mediterranean and I should know better when it comes to managing my arthritis pain. The Mediterranean diet is great source for reducing inflammation that results in arthritis pain. The American Heart Association has some helpful information on this type of diet. I have also started getting more active. I haven’t gone back to the gym yet because clumsiness and embarrassment are my best friends these days. I have, however, started taking the stairs more and taking walks so slowly but surely, I am getting back.

A regular schedule and bedtime routine. I am usually in bed by ten o’clock but my life is busy and I have two young children so I do the best I can here. Atmosphere is important too and I usually don’t watch television, spend time on my computer, or pay bills, once I am in bed.

Quitting smoking. If you smoke, you know (this one is a given) that smoking definitely affects arthritis and fibromyalgia pain. I know this one from experience as I quit over two years ago, and I have never looked back.

Lifestyle changes will play in an important role in the reduction of symptoms as well as improve sleep. Going on two years after diagnosis, I know little by little that these changes make a huge difference in how I feel physically and emotionally. I have also been working on stress management through prayer and mediation. One of the most important things I have learned in the last year is to let go. I have learned to put things aside and not let everything get to me. As I have learned all too well, a carefree attitude plays in important role in stress management.

I don’t think I will ever go back to enjoying waking up early in the morning or on Mondays, but if I get lucky, I won’t have to worry about Mondays or mornings. For now, I will keep mumbling and grumbling with my dear buddy Garfield about Mondays, mornings, and Monday mornings.

Posted in Fear, Fibromyaloga, rheumatoid arthritis

Fears and Dreams

Last night, I had this dream that my hands were awfully deformed and when I started showing them to my husband, various family and friends, they all told me that my hands looked just fine. I was the only one seeing the deformity in my hands which leads me to wonder how much my own fears cripple me. I worry more about my hands than I do about my feet, ankles and knees. Furthermore, my feet, ankles and knees hurt me a lot more than my hands, but for some reason, I worry less about them than I do my hands.

I have recently stopped taking elevators and taking the stairs more. I have started a walking routine and I am taking it slow. For the first time, my symptoms appear to be improving instead of getting worse and I am taking advantage of the opportunity to get more active again. For a long time, I felt depressed that I wasn’t as active as I used to be, but I made a choice to be patient about my inability to be active because I knew the time would eventually come. I miss being able to go to the gym and the long strolls my ten year and I used to take. I miss all the time we used to spend playing outdoors and exploring nature. I look at the lemons I have been handed and for a long time, it took a lot of me to make lemonade but these days, it is all I do.

I know that my fears cripple me more than my conditions do. I enjoy being independent and not relying on others. I am the type of person who people lean on and I am not used to leaning on others. I have always been active when it came to having a voice. In high school and college, I was very active in student government, and was even student government president in college. After college, I did volunteer work every opportunity I had. I was always active at my son’s school even while working full-time and attending school part-time. Of course, I have fears, but I am slowly learning not to let them consume me.

The American Heritage® Dictionary of the English Language defines (and gives examples of) fear as (1) a. A feeling of agitation and anxiety caused by the presence or imminence of danger. b. A state or condition marked by this feeling: living in fear. (2) A feeling of disquiet or apprehension: a fear of looking foolish. (3) Extreme reverence or awe, as toward a supreme power. (4) A reason for dread or apprehension: Being alone is my greatest fear.

Charles Darwin, in book The Expression of the Emotions in Man and Animals described fear as:

Fear is often preceded by astonishment, and is so far akin to it, that both lead to the senses of sight and hearing being instantly aroused. In both cases the eyes and mouth are widely opened, and the eyebrows raised. The frightened man at first stands like a statue motionless and breathless, or crouches down as if instinctively to escape observation. The heart beats quickly and violently, so that it palpitates or knocks against the ribs… That the skin is much affected under the sense of great fear, we see in the marvelous manner in which perspiration immediately exudes from it… The hairs also on the skin stand erect; and the superficial muscles shiver. In connection with the disturbed action of the heart, the breathing is hurried. The salivary glands act imperfectly; the mouth becomes dry, and is often opened and shut (p. 290).

One thing I have learned is that our worst fears don’t usually come true. (Save that for the horror movies I refuse to watch.) In the beginning I felt that my conditions were crippling me and forcing me to become unable, but day by day, as I picked up the pieces, I realized I was the one crippling myself and forcing myself to feel unable. Of couse, I still have fears but I refuse to let them cripple me.

My dream just reminds me that I fear something that most likely will not happen. In the last five years, RA medications are evolved and are showing a lot more promise than they did ten or more years ago. FMS is now recognized as a chronic illness of the central nervous system and with that advancements will come. I have taken my own health in my own hands by trusting my doctors, educating myself, and looking towards my own faith when I start to feel weak. I have taken notice of the ups and downs faced by others dealing with the same conditions, and I know that there is always hope.

When I was first diagnosed, my mother told me about my grandfather’s diagnosis in the late 1960s and how the disease crippled him because the medical options weren’t there. Sometimes, I hear others talk about the struggles that their older relatives went through because of living with RA and FMS, and my heart goes out, and I am also reminded how fortunate we are to live in an age of medical advancement. It makes me sad that the options were not there all those years ago when my grandfather suffered with the physical pain of RA and the eventual the destruction of his joints. My mother told me that he went through periods where he could not lift his arms and take care of himself and periods where he could not walk. It would come and go but eventually, the disease weakened his immune system. He died in his sleep in the 1980s as a result of a heart attack when he was in his mid-60s.

I never met my grandfather as I was only about five years old when he died. I am reminded how fortunate I am to live in this age of medical advancement and it helps me to push my fears aside. I believe it was Louisa May Alcott that said: “I am not afraid of storms, for I’m learning how to sail my ship.” As for me, the storms have finally passed and I am seeing an improvement in my condition. It is time for me to put my fears aside and learn how to, again, sail my ship.