My poor neglected blog. I still have nothing to say for I am all blogged out. Hopefully, the ideas come again.
The Bloggers Prayer
A Birthday Passed
On July 9, my late brother would have turned 33. I tried to blog about him and how I was feeling but I cried with every word I typed. The fact is that there is nothing that I can do to change the circumstances. He is gone and we are all left with an emptiness that cannot be filled. The fact is the loss of a sibling is like the loss of a limb. It is a part of you that you will never get back. The numbness and the sadness remain with you every day of your life and probably for the rest of your life.
All I know is that when Moe died, the world changed in a heartbeat. The thing about siblings is that they share a bond that is unique to them and is a part of their history. The death of a sibling shatters that bond and that history becomes a void that can never be filled. A part of me knows that my brother was once here and another part of me wants so desperately to hold onto fading memories. His being gone is reminder that I have lost a part of my past, my present and my future all at the same time and it is process every single day to make sense of that loss.
I miss my brother with every fiber of my being but I know that my brother would want us to move forward despite the blow we were dealt. I keep his photo at my desk as reminder to me how short life is and how important it is to treasure those we loves. Sometimes, it is if I see him staring back, and he seems to smile and say, “Don’t cry. I am with God and I will see you again someday.” While a part of me knows this to be true, I still want to cling on to the memories we shared. We have all changed as result of this loss but at the same token, we are still the same people we were before we lost him. The fact is simple – the more things change, the more they stay the same.
In a month, I will be school shopping for the boys. I cannot believe how fact summertime is moving. My sister from NYC and her boys are visiting so we are keeping the kiddos pretty busy. As our kids grow up, I cannot believe how fast and how much time has flown by. Looking at my own children and at my nephews and nieces, I am amazed how fast they have grown up and how fast time flies. I assume that my mother sees the cycle of life merely repeating itself. When I am grandmother, I am sure I will feel the same. After all, the more things change, the more they stay the same.
I am busy with my job and my home life. After all, my student loan debt isn’t going to pay itself. As I ventured out on this beautiful day, I thanked God for the beauty of this day and for everything that I have been given. Yes, I have endured some tough times but I have come out stronger than I ever thought possible. I don’t have any regrets and my expectations have changed.
This weekend I will be spending more time with my sister and the boys. Raising boys is a great adventure and even as they get older, they continue to be energetic. They continue to fight and to love each other at the same time. I remember growing up and fighting with my sisters and despite that, I loved them and defended them outside of our home. I have said it before – the more things change, the more things stay the same. My sisters and I are very close and we continue to get closer everyday. As for my brothers, I may not share the same bond with them as I do my sisters but I would do anything for them and I would be there for them in a heartbeat.
Where is my Break Already?
My sisters and I took the kids and Mom to the zoo on Monday. I am still reeling from the joint pain after all that walking. The kids had fun and even the wild kangaroo didn’t ruin our day. Yes, a wild kangaroo – it was like something out of a Looney Tunes cartoon. He was going too fast for me to videotape with my phone. I think some kid decided to leave him a piece of candy because kangaroos are pretty gentle creates. We were in the Wallaby Walkabout when all this took place. The kangaroo was jumping as high as he could and throughout the walkabout. When I stay throughout, I mean that he was hoping around the visitors to the zoo and through the walkways. He looked like Wild E. Coyote chasing after the Road Runner. Well maybe the zoo employees were Wild E. Coyote and he was the road runner. No one could catch him. We scurried away with the kids because were worried all the drama would share the younger ones. However, my 14 year old nephew tells me they later shot him a sleeping dart. I guess he was due for nap like a worn out toddler.
Life at the office has been pretty hectic as the quarter ended last week. One of the clowns from the construction department asked me yesterday if I was glad the quarter was over. I responded telling him my quarter was not yet over. I still had a lot of catching from all the last minute stuff that came in. I will need another week to be caught and even all the working late hasn’t helped. I changed jobs and I am still busy as a bee. Yup, the more things change, the more they stay the same. I have always worked for senior people so my workload as always been heavy and you know what, I couldn’t imagine my job being any other way.
I still want a break, however, but I know that this is the life of a working mother and in that case, I would not have it any other way. My kids will be grown up soon enough and I will have more time to myself and more time to focus on my career. I know people who talk about getting older like it is some kind of curse. As for me, I think getting old is a privilege and so many do not get that opportunity. The way I see it is I am fortunate to grow older because that means I get to see high school and college graduations, weddings, and grandchildren. I get to see my children turn into adults and I get to be proud of their accomplishments. Even when I am older and they are older, I will always know that the more things change, the more they stay the same.
On Raising a Child While Fighting a Disease
by Elizabeth Brown
The disease announced itself after giving birth. It often does in women. My daughter was born in October 2007. But right when I needed the most strength, my life force was pulled from my body like a magenta yarn from a weaver’s spool, slowly at first then with an unrelenting speed spinning on the loom’s spindle. Lost in early motherhood’s bleary yet blissful fog, I felt these sharp, hot pains in my hands and the stiffness in my limbs as an inconvenience, much like the sensation of the placenta sliding forth from the womb after the baby has sprung: an afterthought undetected in sheer exhaustion.
It wasn’t until two years later that I received an accurate diagnosis. Tests done in 2008 did not reveal much despite the acute onset. But in July 2010, a blood test revealed it – rheumatoid arthritis, an incurable auto-immune disease in which the body’s immune system turns on itself and attacks and destroys healthy parts of the body, especially the joints, causing bone and joint erosion. Antibodies and fluid collect in the joints and cause swelling, stiffness, and pain which can lead to partial or complete disability. RA is chronic. It must be monitored and treated so it does not attack the internal organs, especially the lungs and heart, and cause death.
“You are likely to lose some function. How much will only be determined in time as we see how you respond to the medications,” my rheumatologist said at the appointment where he delivered this bad news. “Today’s drugs are so advanced. We don’t see the kind of loss of function we saw even ten or fifteen years ago. As recently as the 1990′s, a diagnosis of RA usually meant a death sentence,” he added.
“Thanks,” I said, trying hard to fight back tears.
“We are going to treat this aggressively, very aggressively,” he reassured me. “Your livelihood depends on it.”
My entire life depends on it, I wanted to tell him. I am going to fight like hell. I am a violinist. I am a mother.
At a recent appointment in May 2012, my rheumatologist turned to me with trepidation in his voice. A very articulate man, he stumbled over his words in a way I’d never heard him before.
“Your right wrist is not good. It has shown significant damage since last year’s image,” he said. Here I am, only two years into diagnosis, and I’m already hearing words like ‘irreversible damage’ being thrown about by my doctor. He saw me staring sadly at my swollen hand and wrist. I shoved it into my slacks pocket, not wanting to look at its misshapen form any longer.
“Ready for some real combat?” he asked. He tried his best to soothe my fear with yet another plan of action, like a maneuver akin to a military stratagem, despite the fact that there is little to no hope of conquering this disease.
“Having RA is like having an unruly child – one that is driven to hissing tantrums where control is the goal, management the mommy mantra,” I replied, trying to laugh my way through it. Every mother knows when her capabilities are thwarted. It’s an unspoken “mom thing” – a power bestowed upon every parent simply by the act of being one.
Shortly after that visit, I was with my daughter in the park trying not to vomit due to the nausea and stomach upset from all the additional medicines my doctor put me on. I didn’t want my daughter to see what or how I was feeling.
“Mommy, look what I found,” she said, holding up an earthworm in her sandy four-year old hands.
“I think that worm wants to go back into its hole,” I said. The worm floundered about, thrashing itself, flip-flopping senselessly. Instead of expressing motherly wonderment and excitement, I had to fight to stay in the moment, not to see it as what I might become: my daughter holding me up, taking care of me while I was that useless worm. It is strange how the simplest image can be so powerful. Everything gets reduced to essentials in motherhood – even more so with chronic disease. I needed to think of a plan. I needed to think like a mother.
RA is a disease of opposites. Like the singular squirming repulsiveness of the earthworm contrasting with the fluttery opulence of the butterfly, so this disease seems to point out extremes. It constantly forces me to examine how I deal with self-reliance and accepting help from others. I want my daughter to learn to count on herself – to be independent, assertive, and no-nonsense. She must be strong. But, with this disease, I am forced to show her that it is necessary, and it is alright to have to ask for help sometimes. Some days, I have needed to elicit help: someone to open a jar or thread a needle, to type an essay for me, or to lift a heavy object. I am forced to stow away my pride and my “I need nobody” independence. RA has made me come to terms with my bouts of bungling. I have to laugh my way through moments of ineptness.
I remember in 2008, although I didn’t know it at the time, the disease had announced itself. While my six-month old daughter was still sleeping in her crib, I woke up to a body that was stiff, not pliable. I couldn’t move. I knew something was very wrong. Panicking, I rolled myself off the bed and slithered across the floor to phone someone for help.
Eventually, a friend, who had once been a boyfriend, came to help me. Whereas, once we may have shared passionate moments long ago, naked flesh wrapped upon naked flesh, now he spent the day dressing me, helping me up and down onto the toilet, feeding me, and taking care of my daughter.
“It’s going to okay,” he said as he hugged me reassuringly.
I buried my face in his chest, unable to wrap my arms around him, and sobbed, sensing with palpable certainty – with a mother’s intuition – that I was losing something precious: the mother lode of good health. Without my friend’s chivalric aid that day, I wonder what would have happened as I tried to care for my daughter. She would have been abandoned there in her crib with me unable to pick her up, feed her, or comfort her. RA can steal one’s self-pride. No knight in shining armor can help. But, I will not let RA get away with such behavior. It is not going to win.
I want my daughter to learn that one can never know what someone is going through just by looking at him or her. Even though I may look healthy on the outside, I am not. My life is a constant monitoring of T-cell and helper cell counts, C-Reactive Protein tests, tests for RF and CCP antibodies, imaging, sedimentation rates, X-rays, and MRI’s. The medications I must take are expensive, even with insurance, and consist of low-dose chemotherapy drugs, immune-system suppressors, and anti-inflammatory medications. The side effects of these medications are often worse than the intensity of the disease, but I am getting more and more used to them each day as I battle my flare-ups, all the while vowing to never surrender to the chronic pain and unrelenting fatigue.
Once my daughter and I passed a woman on the street who was struggling to walk, obviously dealing with a serious disease.
“Poor lady,” my daughter said.
“It’s too bad she is struggling. But she is strong. Look at her getting around and living her life,” I said.
“Yes, she’s a super lady,” my daughter replied.
“Yes, she is,” I said. She has to be. I don’t want to be a mother fighting a disease, but I am. I can’t fall apart—I need to take care of a daughter. But it is my daughter who keeps me going. Her needs have the power to push me through the pain, forcing me to move through it, and to accept it.
Doctors don’t know what causes this mysterious condition. Is it a virus, genetics, environmental, stress? The disease secretly envelopes around the tissues and takes hold of the body. There is no cure or magical respite coming. The pain ranges from mild to severe. It can be a dull ache but it can also be sharp, hot, and incapacitating at times, too. There seems to be little rhyme or reason to the pattern of pain. But it forces you to deal with it and to accept it very quickly.
I try not to make my daughter’s days all about my RA. She needs to explore, to read books, and to paint pictures. But my daughter has begun to understand that she is living with a mother in chronic physical pain. She now knows that my styling her her ponytails, my brushing her teeth, and my tying her shoes have become quite difficult for me.
“Does it hurt, Mommy? Let me hold your hand,” she says. Her delicate fingers, untouched by disease, might not look like they have the power to soothe, but her life energy and spirit enter my sore digits and they are relieved. Even if the relief is only temporary, its effect reminds me of my earlier years, before disease, when my sleek, adept hands could perform the most intricate of tasks like fixing my doll’s jewelry as a child, or minute instrument repairs on my violin as a teen or adult, something like a surgeon operating on a body.
Life has a way of preparing you for the future. In time, I would take on great levels of pain and tolerate them well: injuries from sports or accidents, repetitive stress injuries from playing the violin (tendonitis, pinched nerves, and muscle aches), and of course, the mother of all pain, childbirth. All of these were like a training ground for RA’s pain – a vicious “devil” that gnaws at my inflamed joints in a raging fury, wakes me up at night more than my newborn daughter ever did, and whose raw, unendurable persistence tries to wear me down every chance it gets. I use acupuncture, self-hypnosis to ease pain and increase blood flow, and a whole host of other remedies to deal with it. Sometimes, I can function at a superior level under huge amounts of pain, but I would prefer not to. Unfortunately, RA doesn’t allow such choices.
I am teaching my daughter how to deal with pain. I want her to tell me when she is in physical or emotional pain, so we can fix it or learn how to cope with it. She is learning to be vocal about getting her needs met.
“Mommy, I am sad.”
“What are you sad about,” I ask her.
“I missed you today.”
“I missed you too.”
I will then soothe and comfort her in my arms and let everything stop around us. This is as necessary for me as it is for her. Her relief becomes my own. Experiencing life in the present moment brings a true sense of calm. I have learned to manage only moments, not an entire lifetime.
Lost stitches of the past need to be caught up and woven anew with threads of the present, sewn together into a quilt of destiny: wrapping wounds, soothing and protecting dreams, guiding tomorrows.
How this disease will take over my body still has yet to be seen. But I can’t help question my ability to parent through all this. Will bitterness take over? Will the disease take away my ability to be a mother—a good mother? Will it take away my focus on what my daughter needs because my needs are going to be so great?
I hide my disease from most of the world. I am afraid of the stigma and the reactions. I fear if people know, they will pity me or “sum me up” or package me away as sick or disabled or defective. I worry how others might blacklist me from the musical world if they find out. Will others demand less from me? Will I demand less of myself?
I am swallowed up in a deep chasm, somewhere between light and total darkness. I am like the worm that must live in the cold earth but that also needs to come out for the luminous warmth of the sun. I teeter between a healthy life and a completely disabled one. I am happy here in this spot because I know I will never be cured so I can’t be a part of the healthy world. Staying somewhere in the middle means that I will never drift to the opposite extreme – total disability. I have to live a life while I am dying slowly, at least without the constant use of medications to keep me alive and prevent me from being buried in that total darkness.
But I can’t hide my RA any longer really. Like that worm I need to come out and feel it all, live it all. My daughter is aware now. I must show her who I am, and I can’t shelter her from who I might become.
It is all about survival. What better way to do this than to look to Nature: to find what is predictable and constant; to search again for what is pure and beautiful; to embrace that which does not let you down. But Nature brings renewal. It adapts and stays strong through it all – the unending cycle of the seasons; the worm morphing into the butterfly; and a girl becoming a woman and mother.
Nature and the body seem the same to me. Both are stunning wonders that can calm, can move, can catapult me into other dimensions with their intoxicating beauty. But both are impermanent and under attack. All living things, like Nature, are dying a little each day. This I have found to be the most beautiful of all about Nature and about the body. Their spiritual substance – their richness lie in the simple fact that neither will last forever. My body will be long gone before my daughter’s life is over. I hope Nature will still be there for her at the end of her life. Nature and the body change. They must. There is unspoken, remarkable beauty in accepting that. There has to be.
I am allowing my daughter to experience my transformation. We are slowing down, taking time to experience the moments we are given, being outdoors more, seeing it all with new eyes: hers because she is fresh to it all and mine because I am viewing everything differently now that I have RA.
At this moment, my daughter is bringing me a butterfly. Perched on her finger, it flaps its wings in the spring sun.
“Mommy, look at the butterfly move its wings,” she says. The fragility of its tissue paper wings and spindly legs do not make me pity it. I want to be the butterfly. I would need the eternal warmth of the light to fly and stay alive. I could see the beauty all around me. I could soar through the air unaware that I float between dying a little each day and stone cold death.
It is a myth that if one touches a butterfly’s wings, it dies. One only removes some of its wing scales. This disease has strongly rooted itself in my body, but it has not been able to exact its toll yet. It may have taken away some of me, but there is still more of me to give.
As my daughter holds up the butterfly for me to inspect, it flutters off, swooping, swerving, free to be itself. My daughter and I run after it. My feet seem light now. I am lifting up into the wind: flapping, flying. Now, the thread of evolution extends out before me – my daughter is an extension of myself, I am a product of my parents and their parents before them and all of who have come before me. The indomitable strength of natural history flows endlessly, giving my power as I fly – unraveling, reaching, spinning into infinity behind me. I see my daughter there as I float above her. Her young legs and arms are mighty, her body is energetic, and her mind is full of the abounding spirit of youth. She is strong; she is resilient.
I have prepared my child for this all along.
Exactly like a mother should.
Elizabeth Brown is a writer, writing teacher, violinist, and single mother by choice. She studied creative writing at Northwestern University and at Goddard College where she obtained her MFA in Creative Writing. Her website is www.elizabethmbrown.com where you can also find her blog which will be launched soon.
- I Miss Me, Too (livinglifewithraandfms.wordpress.com)
- Rheumatoid Arthritis and Depression (theadventuresofarthritisnfibromyalgia.wordpress.com)
- Did you know that RA patients are at a greater risk for gastrointestinal problems? (theadventuresofarthritisnfibromyalgia.wordpress.com)
The first piece of advice you can from people when you are newly diagnosed is to not let the disease define you. While there is good intention behind that, chronic illness is going to define because it changes you and your very way of living. You have to find ways to live with chronic illness successfully and most changes in your life are due to chronic illness being a part of it.
Living with a disease like chronic illness throws you into a whole new world and you start to question who you are and who you are becoming. You can no longer define yourself on the things you accomplished or had plans to accomplish. A part of us knows that the people who love us always will but the other part wants so desperately to connect to those people as we were before chronic illness came into our lives. Many of us have had to quit jobs, change jobs or cut our hours. We have also had to limit our involvement with friends and activities we once enjoyed.
Depression is also factor because getting depressed is a response to all the affects that the disease has our lives and our bodies. When you are depressed, you feel unworthy and it is hard to see through that logic. It is no wonder so many of us feel defined by our diseases.
Living with both fibromyalgia and rheumatoid arthritis, I know that my health defines my day to day. It defines whether I can spend time with family and friends or whether my laundry and housekeeping will get done. It also defines my work day and whether I will make into work. We are always working so hard not to let our diseases define us but we don’t stop to wonder why they do. The only way to NOT let disease define you is work toward disease management but as hard as you try, your disease will always define you in some way or the other. How can living with chronic illness NOT define you?
I have learned that HOW chronic illness actually defines me is more important than the actual idea of NOT letting it defining me. Does it define me with anger, self-pity, sadness or resentment or does it define me with patience, empathy, endurance, and determination? I pick the latter every time. Does chronic illness push me further way from loved ones and God or does it bring me closer? Again, I pick the latter option.
Instead of spending so much time not allowing chronic illness to define us, we should allow it to re-define us in positive ways. HOW does chronic illness define you? Does it define you with anger, self-pity, sadness or resentment or rather does it define you with empathy, patience, endurance and determination? Does it push you further away from loved ones and God or does it bring you closer to these things? What things do you do so that chronic illness defines you in a positive light?
If you miss the me that was inspirational, happy and chirpy – guess what, I miss me too. I am so sick and tired of being sick and tired – simple as that. There is no other way to describe it. June was a month of more than I could handle and here I am starting July in the same way. I wish that was not the case but it is.
It is days like this that I wish I knew who I really was. Being sick can strip away layers of who you are. If you identified yourself with your career before chronic illness came into your life, it is hard to do that when doing your job becomes hard. Similarly, if you identified yourself in your relationships, those relationships suffer as a result of illness. For me, I identified myself with all the things I felt like I was good at such as being a parent and accomplishing my dreams. I believed I was close to having it all as a working mother but RA and fibro changed that. Having lost that part of myself has been hard especially on the days where it feels that I am in control of nothing.
Four years ago, I knew who I was without a doubt. I was working mother with a new baby on the way and aspirations of a career in law. I was going to go to law school and by this point, I would have been practicing law. My personal relationships were healthy and so was my body. Life was good.
However, September 2008 changed everything and getting very sick was not a part of my plans. In the beginning, I thought that getting sick was a temporary setback and that I return to full health soon enough. Within a year, I knew that my plans were permanently changed and my identity was slipping away. I was losing myself and at the time, it felt like the worst thing that could happen to me.
The person I was four years ago could not have endured what I have in just one month, let along what I have endured in the four years since my diagnoses. Have I really lost myself or have just learned to be a better version of myself? Or perhaps a less than adequate version of myself? Whatever the case, the need to identify with my illness is strong even though my mind and heart disagree. RA and fibro are a part of my identity whether I like it or not. However, I have not really identified myself with my illness in the past even though I have identified myself with the limitations that RA and fibro pose. Dos that make sense? The limitations that have again returned leave me missing the me I was when those limitations were dormant. I have accepted that the me without RA and fibro is gone but I refuse to accept this new me who has been in pain and feeling sick for over a month.
In the past year, I have realized that I identify myself with my abilities rather than my limitations. However, with this month long flare, I am feeling the opposite. When I am not able to live up to the lifestyle I created after RA and fibro came into my life, I find myself confused as I did that first year after diagnosis. I am not sure if this is short term and this new flare-up is here to stay. I am sad that I may have to change my plans yet again especially when I am still clinging on the person I became when I thought that I was in charge of my physical health.
As much as I miss me, I know that illness opens up opportunities to learn from our experiences. Being chronically ill has required me to change courses more than once and it has allowed me to find different passions such as advocacy and faith. I am not sad about the path that my diagnoses took me. I am just unsure about where I am going now. I know that if things continue to go downward, I have to make additional changes so that I see progress again. I also know that I am very busy and that stress has taken its toll on me.
Over the past four years, I have fought to establish a new identity after rheumatoid arthritis and fibromyalgia managed to eat away at my plans. Something tells me it is time to stop fighting and let the cards fall as they may. I have always told myself that I fully accepted RA and fibro in my life but what I did was create a new mindset for living life with these diseases. Subconsciously, I vowed they would never win. I will continue to work towards disease management but I am not going to fight the change that RA and fibro brings to my life – after all, it is out of my control. It takes me energy to fight a battle I cannot win than it does to focus on what is most important. Yes, I miss me but I have to continue to move forward in order to see progress. If that means changing courses and plans again, so be it.
June was not an easy month for me as I have spent most of it being sick and tired. Today is another day of being sick and tired. These are the days where I wonder what control I have and whether I am actually winning any battles. Sometimes, it feels like I never had a fighting chance. I just want to feel somewhat normal but I don’t even know what normal is anymore. Is it a state of mind or is it an actual thing?
Today has been a today of accomplishing very little. I had things to take care of and nothing has been done. I can barely keep my head above water. I keep telling myself that I am stronger than this but the more I tell myself this, the weaker I feel. One bad day can do that to you. I am struggling with understanding what this means for the overall picture. With the exception of my first year with RA and Fibro, I have never gone this long with symptoms. It is not just the pain, it is the feeling of being pain and the fatigue that are taking their toll on me.
I just want to me again – not the me before RA and fibromyalgia – just the me I was when my symptoms and pain were well managed. I am trying to get there but it is not an easy thing. People do not realize how difficult RA is and the majority feels that it is just a question of maintaining pain without realizing that there are other symptoms. It is the other symptoms that do me in. I have even dealt with my own share of complications such as the constant infections, eye issues, and stomach issues. All of these can be difficult for the RA patients. With fibromyalgia, it is not just the pain that gets me, it is fibro headaches and I am dealing with one right now. They are just as bad as migraine headaches.
I am trying to be strong but living with RA and fibromyalgia isn’t for wimps. I feel like I trade one for the other because one or the other or both are causing symptoms. This latest headache is has been pretty debilitating bringing with it neck pain. I found myself earlier near tears, some from the pain and nausea, and some from frustration. I stopped myself and reminded myself that tomorrow will be better. I want to enjoy the summer and get out of the house but so far RA and fibro made that difficult in June. Today is a new month, maybe this month will be better.