There are so many websites out there about Rheumatoid Arthritis and often times; you need to look through multiple sites to find all the information you need. Well, that is all about to change. I was recently contacted about a new site called: Reach Beyond RA that offers more than just health information. It offers a variety of other resources that affect those of us living with RA, including home, fitness, finances, and just simply living life.
I have not been this excited about a website in a long time because I am picky about the RA information I read and accept as truth or helpful. This particular site is created by UCB, Inc., a global biopharma company focused on severe disease with offices in more than 40 countries*.
The first thing I did when I got to the site was do a cursory review the home page for the site. It is loaded with some great information on the MY RA fit kit, financial assistance, and scholarship information for RA patients. There is also links to an affiliated site, Healthy Women, which is independent health information source for women that offers an RA page. I will review that site at a later date.
My favorite section was the RA recipe section that included RA friendly foods and foods that decrease inflammation or don’t cause inflammation. Each recipe includes kitchen tips to make food preparation easier for RA patients. For example, the Baked Salmon recipe suggests using a food processor for chopping onions and a hand held mixer for recipes that require a lot of stirring. Moreover, each recipe notes its benefit to the RA patient. In the salmon recipe, for example, it is noted that fresh salmon “is a great source of protein, Vitamin A, and omega-3s (a healthy, beneficial fat), while the low-calorie sauce is rich in helpful antioxidants.” It looks like all the recipes are set up the same way and they are not time consuming because, just like the rest of you, I can’t always stand for long periods of time in the kitchen and my hands and arms can’t handle a lot of chopping and stirring. The diet section is also loaded with lots of great information on just about everything for practicing a RA friendly diet – something that many of us struggle to figure out.
The video section offers great videos about healthy living with arthritis. A favorite of mine offers tips on making your workplace RA friendly. I was pleasantly surprised by the Learning to Laugh Again and A Full Life with RA videos. There are not many sites that offer information about life with RA or address the difficulties that many of face as we try to have normal lives. For a long, I have stressed on the value of this type of information for those of us living with RA and similar chronic conditions. The “Living” section focuses on the very issues that most of us struggle with daily such as work, home life, and just simply trying to have that normal life that does always seem within our reach. Having a normal life focuses on issues such raising a family, intimacy and relationships – topics that I have tried to touch on my blog because I know that those resources are often not available to RA patients.
A visit to the “fitness” section also put my mind at ease. One of the things I strongly address as an advocate is the importance of low impact activity and techniques to relieve stress. All of this great information is at your fingertips including low impact workouts and activities and relaxation techniques. Offering advice on relaxation and stress reduction shows that mental health is equally as important as physical health. I am glad that they included both under the fitness section.
I cannot say enough great things about Reach Beyond RA but I don’t believe me. I would rather you go ahead and check out the site for yourself.
*I was not paid for this review. The opinions expressed belong entirely to me.
Rheumatoid arthritis is a pretty terrible monster if you ask me. It takes and demands so much from as it chips away at your confidence and emotional state. From the moment you are diagnosed, you realize that your entire life has changed and will continue to stay changed for as long as you live. I often wonder where I will be in ten years. I know very few people who have had RA more than ten years. Most of those I know have had it between five and ten years. Those people give me hope that I still have at least seven years before things really get worse for me. And maybe, when they hit their 1o year mark with RA, they will give me further hope. Right now, I am just focusing on the short term because I know all too well how short life can be. Who knows what tomorrow holds? Maybe there will be a cure tomorrow, maybe I will go into remission, or maybe RA will win. I don’t have any answers so I have to focus on the here and now.
I have tried treatment after treatment, taken my medications and have only missed a dose here or there, taken supplements and changed my diet. I have also tried to maintain an active lifestyle despite my limitations. Here is the thing – nothing ever works for very long and that is the frustrating part. Just when I think I am close to remission, I have a setback. In May, it was an automobile accident and after a good month there, the flare-ups are coming back in full force.
What I have learned in the past three years is that no matter how diligent I am about my health, how much I exercise or the quality of activity I do, or even my conscientious diet changes, my RA pain and symptoms are to stay. I have gotten to the point where I feel like remission is not for me. My rheumatologist for some reason seems hopeful but I don’t. Even though I had a strong mindset with it comes to dealing with RA in my life, I don’t feel that I can ever really be free of its claws.
Someone once told me that it is my mental mindset that is holding me back. However, that person doesn’t have RA or a deliberating condition like RA. Here is the thing – I have tried and tried to convince myself that remission is possible but I have come out empty handed each time so, of course, I am doubtful. Moreover, while the setbacks are only temporary, they are nevertheless a part of my life.
It is pretty hard to remain optimistic about RA when the disease is like an invading monster that puts your body in a whole lot of pain. This monster feels like it has taken my body and emotions hostage and everything is suddenly out of my control. While the flare-up will eventually pass, it does not mean that I don’t feel drained and defensible while it is happening. The hard part is that I still have to live my life as it is happening. I still have to go in to work, I still have to take care of my home and my children, and I still have to live my life.
The past week, it has been rainy and cool around here and my body is acting like a freaking weather barometer in response to the changes in temperature and the dampness. And this didn’t just start after the rain or even during, I felt it long before the weather changed and here I am going on two weeks. I am really thinking about moving to Arizona. If anything, at least I will be in less pain. Yesterday, I was dragging my right leg around before of how painful and stiff it was. It was not moving and neither was I. Today, I am dragging every part of me and I would just rather be in bed. It does not take a lot for RA to win and drain all your energy.
Yesterday, I had an appointment with the chiropractor which I was happy to go to because it is not just my RA pain that is making me insane. The herniated discs in my neck and back are acting up too. A chiropractic massage and ultrasound massage really helped to elevate some of that pain. Too bad, I can’t have that for the rest of the joints in my body. Now that would be nice. I have a hand held massager but it does not seem to offer me the same benefit.
Another comment that I received recently was that I have to trust my body and trust that is healing. Wishful thinking on my friend’s part but it is not that easy. I do want to trust my body and trust that it is healing but I don’t feel that it is. Also, my thoughts and emotions are based on how I physically feel rather than how I feel emotionally. I feel like crap physically and obviously, the emotional response is warranted.
No one knows what it is like living with this horrible monster – well except those of you who struggle with this disease. It evades when it feels like it and often times, when I feel like I have finally gotten control. It seems to be worse at night because that is when I feel the throbbing to be worse than it has been all day. During the day, I am too busy to notice how bad it is but come nighttime, I am not able to fight that monster. My solace finally comes when I am able to fall asleep hoping that I am not awoken by the monster’s fiery.
Despite the daily ordeal that RA puts me through, every day I find strength I never had. I find it at night as I try to sleep despite the throbbing and I find it daily as I go about my day. While I fear that the worst is yet to come, I know that these daily lessons are only preparing for that big battle ahead. That horrible monster either wins or he doesn’t but for now – at least for now- I have some control. I may not believe that remission is possible but I do believe in my own capabilities and strengths. I remember when I was first diagnosed that another RA’er told me that “yes, the pain would get worse,” but that I would learn to deal with it the more time that passed. I have taken that advice with me every day since. If not for that advice, I think the RA monster would have won a long time ago.
I wanted to thank everyone for their kind words to my recent post. Each of you is correct that it will get better and that most of my frustrations are because nothing is changing just yet. I think that, and we are all guilty of this, when are dealing with all this stuff, we have a tendency to forget that there are still good things happening in our lives. The truth is there are good things happening in my life but it is so hard to focus on those when the bad seems to triumph the good.
It has been nine months since we lost my brother. I keep trying to tell myself that it will get easier but I am only lying to myself. When I visit Mom, I ache for his silliness and the annoying things he used to have. Even though we never saw eye to eye, I loved all his quirky and annoying habits. Those are things I miss the most. He never knew how to be serious and when it was time to be serious, he even found humor in that. The summer before he got sick, we were not on the best of terms. At the time, I didn’t know what I did to upset him but my sister later told me that he felt that I didn’t pay enough attention to Mom. The truth is he was right and he was upset about it because it all fell on him. I was so engulfed in my own issues that I didn’t always make time for her. For God’s sake, she is my mom and I should have been there for her more. I know that when he got sick and before he passed away, we worked things out but there is always that nagging feeling of “what could I have done differently?”
The weather and the flare-ups I have been having haven’t helped my mood either. As you can see, I am not a fan of setbacks. I am also not a fan of going to the doctor’s because I have to miss work and it is a time consuming scenario. I am frustrated with the fact that I am always seeing the doctor and I am still not better. I am frustrated that despite the fact that I work my butt off and I have three degrees, I have nothing to show for it. Sometimes, I have to remind myself that I have so much to be grateful for despite my health but it is hard when your health is the one thing that holds you back.
Life can be one heck of a mean teacher – first the test, then the lesson. Don’t you hate those kinds of teachers? RA and Fibromyalgia both have emotional aspects and I think that I have fallen prey to them as of late. I yearn to be the person I was before RA and Fibro ever came in my life. I never used to worry about being overworked or not getting to bed early but now, all these things affect I feel on any given day. I am not depressed but it doesn’t mean that I don’t have my moments. Anger, helplessness, loneliness, wanting to understand the meaning of life, mood swings, etc. are all commons emotions when you live a chronic condition. We all go through the motions. I miss having more good days than bad and I hate that forgetting to take my medications and not getting enough sleep sends my body wondering what the heck is going on. Sometimes, I fall asleep saying out loud, “I am in so much pain,” as if somehow saying out loud will change something.
I know that what I am dealing with now will pass as any storm does. My mom often says that storms eventually pass and that the downpour isn’t long term. Sometimes I have to remind myself as these tough times are only temporary. Life is just like that. There are terrible blows that we endure and get through and then, there are other times where we simply have to cut our losses and just move on.
One of the things I have learned throughout the tough times is that I appreciate the simple things in life. I get to enjoy the simple things like a warm cup of coffee, time with my kids, and a weekend away once in a while. I remind myself about the simple things as I am dealing with the really big ones. You just have to get up and keep going especially when that is all you can do so -yes – the storm can pass.
I am fortunate to have so many to stand by me as I deal with difficult times. You remind me that this shall pass – the storm will eventually clear. Life will change because tough events change us. If anything, it makes up truly appreciate the good and the simple pleasures in life. The sun will rise again.
I am not sure how many times I have already been tested in the last couple years. I just know that I keep going and I have learned that I can’t just easily give up. For the most part, I do it because I don’t have a choice and other times, I would rather give up. We have all been dealt life’s curve balls and more often than not, we are not really prepared.
For me, the setbacks keep coming and I just keep going. What else can I do? If I don’t keep going, how can I teach my kids that despite life’s unfairness, we all have to be willing to stand up and take charge? How do I tell them to keep moving towards their goals and dealing with life’s setbacks when it is not always easy especially when curveballs are out of your control? Lately, it just seems like those curveballs keep coming. It is frustrating and discouraging. It makes me feel defeated, angry, depressed and anxiety ridden.
I have learned over time that the answer to setback is how you come back. Curveballs are only temporary setbacks. I want to tell that to myself today as I start a new day where the stress is mounting and life’s tests are out of my control. Someone once told me, that it isn’t the test itself that matters; but rather, it is whether we choose to give up or stay fighting that matters the most.
A dear friend of mine once said that she is tired of fighting and getting nothing in the end. I understood those words myself. I tried to comfort my friend when she said that but I knew exactly how she felt. I am so tired of being the underdog but what choice do I have? What choices do any of us have?
As I sit here up since 4 am, I am not sure whether I can take life’s latest tests. I remember telling that friend of mine who was tired of fighting that everything happens for a reason but when we are in the fire, it is not always easy to see that. I am in the fire and I am trying so desperately to see that. When life is testing me, my RA and Fibro symptoms hit me hard so it makes the challenge even harder. I have cried and have prayed and I can’t change a darn thing. I just need to keep going and see this through. What other options do I have?
The Audio Book
It has been ten years since Lauren Manning was nearly burned alive at Ground Zero. She is a survivor of that tragic day and in her new book Unmeasured Strength,” she writes about the events that put her in the Trade Center that day, her fight to survive and to get herself to safety so that she could see her husband and son again, her many weeks on at death’s doorstep, her fighting fiery to live, and her journey to today, ten years to the day that terrorists attacked our country. Unmeasured Strength is now available through Macmillan Audio, Amazon, and other fine retailers and tells the personal survival story of one woman’s struggle to overcome tragedy and to recreate her life as a mother, wife, and woman. The people at Macmillan Audio were kind enough to send me a copy of the audio book for review and to allow me to share Lauren’s story with all of you.
An Excerpt from Unmeasured Strength
God asks us to speak, to record the memories that mark our lives. This is the living testament, then, of the times and places and things I have done that mark my days on earth.
Since 9/11, I have often been asked to share my story, but it is always with a certain awkwardness that I talk about myself or my personal feelings. I am much more comfortable telling a joke, chatting about the headline of the moment, or drawing others in by asking about their lives. My parents frowned on self-congratulation, and so even when my siblings and I had a right to be proud of our accomplishments, we were told to be humble. So telling my story has its challenges.
Here is the simple version of what happened: I went to work one morning and was engulfed by the fires that would bring down the twin towers of the World Trade Center. I fled the building in flames, so terribly injured that almost no one held out any hope for me. Yet in the weeks and months that followed, I battled back from the edge of death to hold my child in my arms and intertwine my husband’s fingers with what was left of my own. In almost every way, this is the story of a miracle.
I will never know how many others were gravely wounded along with me during the attacks’ first moments. The places where my fellow victims stood, more than a thousand feet in the air, have disappeared forever. When the buildings collapsed, they took with them thousands of lives, among them too many of my friends and colleagues. By the smallest of margins, I was given a chance to survive, and I decided, early that morning, that I would never give up the fight to live. I would never surrender.
From the Book Unmeasured Strength. Copyright © 2011 by Lauren Manning.
Before September 11, Lauren had a job on Wall Street, a living husband, an infant son, confidence, intelligence and beauty. On 9/11, all of that had to come to a screeching halt when a wall of flame at the World Trade Center left Lauren with burns on eighty percent of body sending her on a new kind of journey. Many, including her doctors, didn’t think that Lauren would survive but when she awoke from a medically induced coma several weeks after the attack, Lauren insisted to herself and to others that she would not only survive but continue to recover and work towards a normal life.
It was the skills of deep faith, hard work, and perseverance that Lauren’s parents had instilled in her from a very young age that helped to escape from the burning tower, to survive many near death misses while in the hospital, endure multiple surgeries, to gain the very functions many of us take for granted like breathing, walking, and using our hands, and to find a new sense of normal when all the odds were against her. Lauren wasn’t just surviving and recovering, she was transforming her entire life’s purpose.
Reading about Lauren’s story, many of us would say that Lauren was unlucky on September 11, 2001 but that is not entirely true. Lauren was one of the lucky few to escape the World Trade Center that morning. 658 of her co-workers at Cantor Fitzgerald died that day and it was phone call that morning as she was leaving her Manhattan home that left Lauren a half hour behind schedule and spared her life. She had been headed to 106th floor of the north tower but only made it as far as the lobby when she and countless others were hit by a wall of flame that engulfed the entire lobby where she had waited for the elevator.
Lauren was on fire and suffering in the most unimaginable way. She prayed for death but she thought about her 10 month old son and how she was not ready to leave him. She pulled herself away trying to get to a narrow strip of grass outside the trade center while still in flames. A man ran towards her, took off his jacket and helped to smother the flames. It took 50 minutes for an ambulance to reach her, and everyone that saw her, including other injured persons, EMTs and doctors looked at her as if she was a goner. Eventually, she ended up at New York Presbyterian Hospital-Weill Cornell Medical Center, the country’s largest burn center. Her recovery was long and painful spending three months in the hospital with nearly a month in a medically induced coma, three months in rehab, having had over 25 operations and skin grafts, having the tips of fingers amputated, and learning to stand and walk again.
Despite, all she endured, Lauren’s feels that she is lucky. In addition to losing her co-workers, her husband, Greg, also lost 61 of his co-workers. He had worked on 84th floor of the south Tower but as fate would have it, he was not at the World Trade Center that day. On 9/11, he had planned on attending a breakfast conference at a restaurant atop the trade center. At the last minute, he had changed his mind about attending to help out a neighbor. Everyone at that conference was killed.
Eight days after the attacks on September 11, Greg Manning wrote an email to family and friends to update them on Lauren’s condition and signed that email and all the emails thereafter, “Love, Greg & Lauren.” The daily emails that helped to him get through the crisis began getting forwarded and shared. They even reached a book publisher and an editor at the New York Times. The New York Times featured an article about Lauren and Greg calling Lauren “a symbol of hope.”
Waking up from her coma weeks later, and finding out what had transpired on September 11 and how much time had passed, Lauren found herself on new mission. She would survive on behalf of those who died. She would not “surrender to the terrorists” or allow them to “define” her. That mission is what helped her get through the next few months and years and aided her through her recovery.
None of us could have imagined the ordeal faced by Lauren and many others that September day. We were at our homes, our jobs, our schools and a variety of places but mostly, we are out of harm’s away. The thousands of employees and visitors to the Twin Towers that day were not as fortunate. Unmeasured Strength is not just a story of a strong and courageous woman, but it is a story about human tragedy and compassion. This story isn’t just Lauren’s story alone. Lauren is just the storyteller who lived to speak for all those we lost that horrible day.
Because I was reviewing the audio book, I was able to hear Lauren’s voice tell that story in a clear way that reminds us all about our own good fortunate and fate. She also reminds us that hope is possible even in the direst of circumstances. I have made the intentional decision to post my review today, the tenth anniversary of the 9/11 attacks so that each one of you can see what see what hope, courage, strength, and human spirit truly look like on the day that it matters the most. It is my way of honoring Lauren and her amazing passion for life. For more on Lauren’s journey, you can watch part of her interview with Oprah from last year which shows her journey from the beginning.
My choice to post this here and not at my review blog is because the review belongs here. While Lauren’s journey isn’t necessary a chronic illness one, it is still a journey of continual healing. The challenge of living with chronic illness or a long-term injury is one that requires a conscious awareness of what is happening in order to fully grasp what has happened to you, your treatment options, and how this will affect your life and the lives of your loved ones. From the moment that Lauren awoke from her coma, she realized how important it was to understand her injuries, her treatment options, and the affect it had on her loved ones. She learned that being sick or injured is like being on a rollercoaster. One minute you are up and hopeful and the next your feel down and doubtful. Lauren went through all the motions as she dealt with setbacks and found small victories. She understood her injuries and her short and long term care were her new reality, along with what the terrorists took from her life, and the affect that it had on her husband, her son, and the rest of her family.
Lauren Manning wanted her life back and she took it back. If that isn’t courage, I don’t know what is. She showed courage to the best of her ability despite her limitations and diminished control over the effects of her injuries. Her decisions and her choices were the stuff in which courage emerges and the fact is that all of us who live with chronic illnesses and/or chronic injuries are courageous. For Lauren, meeting the challenges that life threw at her meant that she had learned and continued to learn how to meet her fears and move past them.
When Lauren escaped the burning towers that day, she did know that the journey ahead of her would be long and difficult but she found a reason to live and she fought to come back to her husband and son. No one knows better than Lauren what she was up against, what she needed to heal, her challenges, and even her victories – big and small. Just like all of us who struggle with something, Lauren acknowledged her challenges and then she embraced them. In doing so, she celebrated her courage and triumphed in her victories. I hope that Lauren’s journey that can inspire and encourage you to live your life to the fullest, to be courageous and to take back what has been taken from your life.
In her own words:
It’s now been a decade since that day, and sometimes I look back and wonder, Have I accomplished anything of note or great worth? People have called me a hero, but I can only say that I did what I needed to do. I was not the agent of my own adversity. Pain and suffering were imposed on me; they invaded and overwhelmed my body and threatened to crush my soul. Once I opened my eyes after a long climb out of the darkness, I knew that every day, I had a choice. Every day I had to fully commit to outlasting my enemies—those cowards who covered their faces from the light and screamed toward us in their metal daggers. Would I let their act of terror beat me into submission? Would I let them win? Would I let them steal my will to live, having failed to extinguish my life itself? Every day, I had to reach deep inside and find an as yet unmeasured strength that made it possible to carry on.
Check out Lauren’s September 9, 2011 interview on The View.
A Day We Will Always Remember
September 11, 2001 will be a day that we will all remember for the rest of our lives. That was the day that an attack was carried out on U.S. soil and an event none of us could have ever imagined. But it happened and thousands were lives were lost that day. Some of them were unsuspecting as they started out their work day. Some were brave public servants and others were ordinary people who risked their lives to rush into a situation that went beyond anything anyone could have imagined to save lives. Others were members of our armed forces who we lost in effort to seek justice for the victims of 9/11 and to continue to keep our borders safe and then there are those who continue to fight for our freedom and safety daily.
Please take a moment to think about those remarkable people we lost, those who were left to mourn their loved ones, and those who continue to keep us safe – our men and women in the armed forces and our men and women that serve as public servants. Share the story of September 11, 2001 with your children and grandchildren because in doing so, we can all continue to honor the memories of all the heroes we lost that day.
The Giveaway: Who were you on September 11?
On September 11, I was sitting a classroom at my college in Downtown Cleveland when a student came in saying she had heard on the radio that one of the towers had been hit. Our professor then turned on the television and we all cried as we watched the pictures of the burning tower. We saw the second tower getting hit and as we saw people jumping from the buildings, we thought that what we were watching couldn’t possibly have been real. We were dismissed early and classes were canceled for the rest of the day. I immediately went home to be with my son who was only a year old at the time. It was a very difficult time no matter where you were in the country.
Unmeasured Strength by Lauren Manning is currently available for purchase in print and as an audio book but one lucky reader of this blog will receive a copy of the six CD audio book. To enter to win, please leave your email address below and if you want, please let us know where you were on September 11, 2011.
The giveaway is open to U.S. addresses only and you have until Saturday, September 17 at 11:59 pm to enter. I will announce the winner on Sunday.
Welcoming the Weekend
Despite being a one day shorter week, it seems like it a longer work week than usual. Needless to say, it has been one of those weeks where the craziness is in full force. As the end of the quarter nears at the office, it is race to get leases fully executed prior to its end so every day turns in a mad rush of a situation. Yesterday, it was old school because our computer network, phones, and anything network related went down at 4:00 pm. My company is so network and computer based that production had to stop. Our printers are on the network too so that means even if we worked on something, we couldn’t print it out. Whatever we worked on had to be off the network, and the since the desktop is the only thing off the network, our options were very limited.
Needless to say, I did not leave the office until a half hour later than I usually do because I ended up running from building to building (my company is three buildings) trying to figure out the game plan for three very important leases to get out and make it to their destination today. However, despite my best efforts, the leases did not make it out the door but at least I tried and everyone knows I did. I know that I am a good employee because even when the network failed us, I didn’t. Many employees stopped working when the network went down but I got creative (as I have done in the past) and actually got work done. I am usually one of the last to leave at the end of the day. However, in all honesty, there are days where I rush out the door at 5:00 because I have had enough.
I ended up missing my yesterday appointment with the chiropractor because I had to stay later, the third one in three weeks so it the chiropractor appointments are ending up once a week rather than twice. My attorney won’t be thrilled with that. After the second corticosteroid shot, I am starting to see relief. I am still not pain free but I am getting there. The RA and Fibro pain has calmed down as result of all the measures to get me pain free. However, I am taking a lot of medications: Methotrexate, Sulfasalazine, Gabapentin, Humira, Mobic, Folic Acid and other supplements, and the corticosteroid shots. Sometimes I feel like a walking medicine cabinet. Ironically, I don’t always take them twice a day as I should and I am still seeing relief – something, I can bring to my doctor’s attention as a positive in my treatment plan.
In recent weeks, I have found myself getting very forgetful and that’s hard to bear. Perhaps, it is all the medications I take or that I am not getting enough sleep, or even that I am stressed with all that is going on in my life right now. Whatever it is, the fact that I have suddenly gotten forgetful is scary. Here’s the thing, I don’t forget anything especially factual information. I can forget faces but I don’t forget names. At work, I remember tenants and where they are located. In my prior job, I remembered all the file numbers and names. I even remembered facts about the cases we were working on so when someone in the office would say to me, we had a case once where this happened and this is how we responded, I would be able to tell them which case that was and that is something a lot of people didn’t remember.
Now that my master’s degree is done, I have had more time to read. In fact, I even listen to audiobooks on my way to and from work. My mind has to constantly be working and maybe it is that I am a type A personality but that is how I live and breathe – on information. Even as I lay to bed at night, I start to plan certain aspects of my life, whether it is about tomorrow, a trip that I am taking a week from now, or visiting my mom over the weekend. I plan and I think – that is how I live my life. I hate when plans change or something falls in my lap at the last minute throwing me off schedule. Moreover, I cannot imagine losing any aspect that pertains to my mind. It is a scary thought. Maybe it is that I am getting older that I am getting more forgetful but it really scares me to death that I could someday lose my mind. I would rather go through anything worse than just simply losing my mind. When I was kid, my siblings would be out playing and I would be reading. I once told my husband if I am ever in a position where I am physically unable to do anything, I want you to make sure that there are audio books playing around me. My mind is as important to me as a labor’s hands are to the laborer so it makes sense that I want it to continue being active. The thought of sitting around doing nothing brings shivers down my spine. I hope that makes sense and doesn’t sound too crazy.
My toddler turns three on Monday which is not only a milestone for him but a milestone for me. The following morning after I had him, my Rheumatoid Arthritis symptoms kicked in. Within a week, I was diagnosed with RA. I have come a long way from those dark days. It was a very hard time for me because instead of rejoicing at the birth of my son, I had lost function of my hands and legs. I remember being unable to get out of bed, using the walls for support and hoping that my legs would not give out on me, and my hands being curled up in fists. My sister was my savior because, if not for her, I would have never been able to get through the next few months.
I was in so much pain, incapacitated by it, and not being able to be strong for the first time in my life, I welcomed death. Of course, in those days I didn’t really understand the impact of death. I didn’t truly understand what the loss of me would do to my family but had I known, I wouldn’t have welcomed it so strongly. I cried for many months not because I was in pain, but because I lost control of everything I once I had control of. My life was altered and because I was facing my biggest adversary so thus far in my life, I felt like I was destined for failure. The only thing that kept me going through those dark and dreary days of my life was my kids. I fought through the pain, fatigue, sickness and depression to come back to them. When I look back at those days, I don’t know who that person was. The person that I know myself to be would have never allowed herself to succumb to anything and I nearly did. I just know that I had to come back- and I did – and not just to my family but also to myself.
All of the lessons that life had taught me previously, I used to get through the darkest period of my life. I educated myself, learned how to better take of my body, I sought support, and I took God’s hand. I wasn’t alone in my journey – I had my family, my friends, and God on my side but, at first, I was too busy wallowing in my misery to see that. Once I was able to gain my mental and emotional strength, I gained my physical strength. Before RA and fibromyalgia came into my life, my relationship with God was there but for some unknown reason, I didn’t think I deserved God’s love or respect. I thought I had made so many sinful mistakes in my life and as a result, I was ashamed of God. When I finally reached out to God and he took my hand, I started to feel the weight of all my pain, my worries, my anxieties and my struggles dissipate. I turned to God in my darkest hour and I continue to turn to God when I found myself feeling alone in the world. When I brother became ill, God is what helped me to get through those sleepless nights when I poured myself into research so I could better understand my brother’s care and to get him the best treatment possible. It was God who helped me deal with the loss of my brother and the issues that I was facing in my marriage at the same time.
As we enter the ninth month without my brother, acceptance has finally surfaced itself. My brother’s battle with cancer still resonates in my mind like a memory that burns at my soul. For a long time, I wanted to understand so that I could have some kind of closure but understanding isn’t what I got. The closure has come in my reinventing my purpose as a human being. I have found a way to put aside anger and hurt, resentment and hate, and any grudge that once I held. I have learned to love myself first and foremost and I have learned to accept the things that I cannot control.
I have dealt with a lot in recent years: financial issues, marriage issues, health issues, and the death of my brother. I am only human and sometimes, I cry for the fate that life has handed me. Even though I have my moments, I have always been a fighter. My mother can attest to that because even as a newborn, I fought to live and even many months later, after an illness, I again fought for my life. Growing up, I was always sick and I don’t ever remember a time in my life where I ever felt healthy, but despite my health, I always continued on. In the summer of 1997 in Jerusalem, I gave birth to my daughter two months early after getting a Hepatitis A acute infection. (Hep A in pregnant women carries serious risks to the mother and baby especially in the third trimester and can lead to an increased risk of preterm labor – I thought I had the flu and didn’t get to a hospital until I could barely stay awake from weakness.) The first night I went into the hospital, I needed two pints of blood and the next day, I nearly died. Miraculously despite how weak both of us were, we both survived. My marriage ended (not that it was a great one to start with) in 2000 and when I left Jerusalem with my newborn son, the price I paid for walking away was my daughters. If not for the fact that my son needed me, I am not sure how I could have gotten through the first year. Until this day, I have very little communication with my three daughters. Despite everything I have endured, I have always managed to keep fighting and to survive.
These days, I just appreciate life and accept that some things are out my control. I have learned to let go of a lot and I have learned to get past my own inadequacies and weaknesses. I have allowed myself to mourn my brother, to find myself, to work on my marriage issues, and to honestly deal with our financial situation. I want to come out on top and in the past, I let anger guide me. I became better and overcame because I told myself I would not let anyone rejoice in my misfortunates, especially anyone that caused it. Now, I overcome and prevail for myself and I don’t look backwards. Life is too short to dwell on things and scenarios that are out of your control and to tell others hurt you or let their anger and resentment affect you. As I tell my son when he feels he has been wronged by others, “Remember the law of the garbage truck.”
“Many people are like garbage trucks. They run around full of garbage, full of frustration, full of anger, and full of disappointment. As their garbage piles up, they look for a place to dump it. And if you let them, they’ll dump it on you.
So when someone wants to dump on you, don’t take it personally. Just smile, wave, wish them well, and move on. Believe me. You’ll be happier.” Dave Pollay.
Being a survivor and a fighter, as I have learned, means I do what I need to do for my own happiness and not to please or displease anyone else. It has taken a long time for me to get there but I have and in turn, I am learning to be happier than I have been in a long time. The “me” before RA and fibro is gone and so is the “me” before my brother’s illness and passing. The “me” that exists now isn’t only a fighter and a survivor but also a lover of life.
I am clumsy and I have been clumsy for a long time. This was long before RA and fibromyalgia came into my life. However, my klutzy moments seem to have gone worse after my diagnoses. To me, it is like a double whammy. I don’t just get stuck with one diseases that affects my ability to be somewhat normal but two. With fibromyalgia, it is my balance that is affected and with RA, it is my shaking hands and wobbly wrists – sometimes even my wobbly ankles and knees. So here I am – walking around like a drunk and dropping things.
I have a swollen long (second) toe to prove that my shaky hands actually do exist. I hate to say it but I wish this was one of the symptoms that was all in my head. Yesterday morning, I grabbed a coffee mug of the kitchen cabinet to put my coffee in. After I grabbed the mug, my shaky hands kicked in and it was like I was juggling the mug trying to get a hold of it. Well, if you played it in slow motion, it would look like it was a juggling incident gone wrong. Despite my attempts to get a hold of the mug, it managed to smash onto my toe rather hard before it hit the floor and broke. I cleaned the mess and cursed about how clumsy I am.
This incident isn’t a singular event. In fact, I have spent the last three years dealing with many not so grateful incidents. I have fallen on my butt more times than I can care to count. I have gotten better at falling, getting up, dusting myself off, and then, going back to what I was doing before the klutz in me attacked with each passing day. Needless to say, I have had some moments where my clumsy moments felt quite humiliating at least towards my ego. I am too young to have to say, “I have fallen and I can’t get up.” You remember those commercials? Most of those people are much older and they are definitely are prone to falling but me, I am in mid-30s.
With that said, I have been fortunate. Aside from some cuts, bumps, and bruises, I have fared well through my not so graceful moments. And I have made use of the word “wobbly,” a word I would have never known how to use in a sentence in my pre-RA and pre-fibro days.
My clumsy RA and fibro moments are often a result of additional things including brain fog – you know those times when your brain is so clouded that everything around you feels hazy and it is difficult to think clear and to function normally. Only someone who has dealt with brain fog can relate. Can you imagine explaining brain fog to your employer? How about during a performance review? I would rather take the bad review. I am pretty sure my employer would accuse of making excuses.
Other wonderful symptoms including the crawly bug feeling – i.e., the feeling that bugs are crawling on your skin. Yes, I can hear that response – “it is all in your head.” Or what I call, the Mush-Mouth, “when the words you want to say just won’t come out of your mouth.” Sometimes, my son finishes my sentences and it is because I can’t finish time, not because he can read my mind. What is worse is my mouth says the wrong word, i.e., “vibrator” instead of “vaporizer.” I also call that sudden stupidness (I am sure that is not a word) especially when I stop in mid-sentence and forget what I was saying. I am also famous for the word “thingie.” You know the word you use when it cannot remember the name of something which is more often than your toddler can count. Another personally named favorite is “tripping over my tongue,” as I call it. Sometimes, I cannot pronounce simple everyday worlds. That is also when something comes out of my mouth and I wonder why on earth I said it.
I am not so graceful these days but I am not sure that I ever really was. I guess I wish I was at least as graceful as I was pre-RA and pre-fibro. How about the rest of you RA’ers and fibromites? Are you clumsy? Were you clumsy before and if so, has it gotten worse with since your diagnosis?
What to Do When Diagnosed With a Chronic Illness
The diagnosis of a chronic illness can be devastating and life changing. These disorders can often share symptoms like fatigue, pain, and concentration issues which affect how a person acts around family and friends. It also may alter one’s future plans and what they aspire to do with their lives. Chronic illnesses can cause dramatic changes which many people have difficulty understanding. There are currently no cures for these problems, although new treatments for symptom relief can emerge. Finding the right treatment can dramatically improve quality of life.
Find a Support System
One of the main difficulties of dealing with this type of illness is that it is often invisible to the outside world. Some people that are are sick and under intense duress, look completely normal to anyone observing from the outside. This can often add to the difficulty of these illnesses, as people can have trouble sympathizing with them. This is why finding a support system of people that understand the illness is so important. Being able to communicate honestly about symptoms, feelings, and treatments can help you stay positive. Sharing knowledge about what works and what doesn’t, can also help deal with difficult problems.
Find the Right Doctor
Having a good doctor is essential for getting proper treatment. Many chronic illnesses are poorly understood in mainstream medicine. Going to a general practitioner is often not the best way to be treated. Many times they will often not be able to diagnose it or treat it properly. These are very complicated, misunderstood diseases, that need specialized knowledge and the willingness of a doctor to prescribe medications that are controlled. A doctor that is not familiar with the disease may be reluctant to provide medications that can improve quality of life. It is not to the benefit of the patient to deal with a doctor that may not have the ability to provide proper care.
Learn As Much As Possible
Unfortunately with many chronic illnesses, leaving care completely in the hands of your doctor is not always the best idea. Many times doctors aren’t familiar with new treatments that are outside the realm of mainstream medicine. Learning about your disease and communicating with them about alternative treatments and supplementation is often helpful. Symptom relief is the goal of treating any chronic illness. Experimenting with new treatments (alternative or traditional) is important to finding the best strategy that will work for you.
It may be challenging to accept that things will be very different after your diagnosis. Your life just took a left turn, while your mind wants to continue going straight. The same path that you were on might not be possible while you are feeling ill. It is important to accept who you are now, and change you plans accordingly. You will still be able to accomplish many things, but you might just have to do it in a completely different way. If you are stuck at home, learning to interact on the internet, or even start a business online, can be a way that you can succeed without pushing yourself past your limits.
After being diagnosed with CFS, James started the website which focuses on illnesses that cause fatigue. It contains articles about chronic fatigue syndrome, adrenal problems, thyroid disorders, and sleep issues. James has plans to continue learning about chronic illness and will launch 2 more websites in the next year.
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