Chronic illness throws you into no-mans-land and you find yourself wondering who you are and who you are becoming. You get to a point where you wonder who you really are because the society you live in defines you based on what you have done and what you can accomplish. Further, modern society defines you by your job, your wealth and prosperity.
When it comes to family and friends, chronic illness makes you wonder whether you really matter to them and whether you are still worthy despite your inability to be the person you used to be. Often, chronic illness takes away our accomplishments or our ability to feel accomplished. Some of us have to quit jobs or cut hours and even hobbies and recreational activities can become limited or impossible. Slowly we lose parts of our lives as our illnesses chip those away.
Then, there is great old depression around the corner just waiting for us to feel bogged down by our conditions. And depression forces a person to feel worthless and not be able to see any logic as to why they are depressed in the first place. I was once told that the best way to ease your way out of feeling depressed over your condition is to imagine a loved one in the same predicament. Then, ask yourself how important this person is to you and how important it is for you to see this person not feeling saddened and overburdened by their condition. You would not want to see your loved one feeling worthless and you love that person regardless of chronic illness. I have often use that scenario to remind myself that I need to love myself in the way that I would love anyone else going through the same thing.
Granted, things change and the only way to escape the depression and dwelling is find new activities and hobbies to replace the ones who have lost. Further, you can adjust and schedule your prior activities around your conditions. There is always a way not to let chronic illness win and even when chronic illness forces you to stay home and rest, watch a movie (a comedy would be helpful) or visit the world wide web. There are many online support groups out there where you can connect with others dealing with the same concerns you have. It always helps to know that we are not alone and that we can learn cope despite and with chronic illness in our lives.
Learning to adjust to a life with chronic illness is a slow process but we eventually get there. The only to truly adjust and enjoy life is to appreciate who you are and who you have become. Forget the past, live in the present, and keep believing in the future.
Chronic illness has taught me so much including,
1. That I am stronger than I give myself credit and that I should focus less on my weaknesses and more on my strengths.
2. That prayer can give you hope even when you believe that hope has run out on you.
3. That it is okay to ask for help.
4. That it is okay not to be the best at everything. Competition is so overrated.
5. That there is still a life out there for you and chronic illness shouldn’t stop you from enjoying it.
6. That we should stop and smell the roses often because reminders are good.
7. The importance of being your own advocate. Find doctors that will listen, educate yourself about your condition or conditions, and speak up for yourself.
8. That it is okay to be weak, as long as you do not let it consume you.
9. To let go of the past and look towards the future.
10. That change is inevitable and not always in our control.
What things have you learned as result of chronic illness in your life?
One of hardest things I have had to come to terms with is not my diagnoses but having to tell people about my diagnoses. Every time, I find myself in a position where disclosure seems necessary, I am racked with the outcome or response. Two years after diagnosis, I have not actually found a comfortable way to talk about rheumatoid arthritis and fibromyalgia in my life.
While I know that my current employer could deny me a promotion (if it came up) because of my diagnoses, they won’t necessarily admit because it would be a case of discrimination and any denial would be based on what they think is my inability to do the job. I never actually went out and told my current employers, it was something that came out in the course of doing my job and I have never shown anyone any reason to doubt my ability to do my job.
What about potential employers? I made a decision in my most recent interview to disclose RA and FMS despite the fact that I knew it may blow up in my face and cost me the position which by the way, I was not offered. From this experience, I have learned that it is a good idea not to disclose such information in an interview. Whether it played a part with this interviewer or not, such information does give a potential employer a reason not to hire you. The more I read up on the subject, the more I realize that if a disability is not noticeable, we should keep it to ourselves especially in a potential employer situation. The same applies to a current employer because it may affect your employer’s perception on your ability to do the job. Another issue that would bother a current employer is how often we visit the doctor. It seems like if you request a day off for an appointment that no one knows about, it is better than requesting one that everyone knows about.
I thought the disclosure about my conditions could be a good thing and now, I am not sure. Either way, I will never know. I now believe that disclosure during an interview is not a good idea because every employer, regardless of their situation, is concerned with the bottom line. Moreover, I sense that our problem, as sufferers, with disability or chronic pain conditions is a stigma we get as a result of the perceptions of society. It is a “catch 22” dilemma. If you talk about your pain or condition, you risk be perceived as chronic complainer or hypochondriac, and if you hide your pain, others do not believe the significance of your pain condition.
For me, I have learned that disclosure is not a good thing (I wish I had thought about that two weeks ago) and it is a lesson learned. My RA and FMS do not define me nor do they define my abilities and my abilities speak louder than my conditions. So, in the interest of learning from this experience, I won’t dwell on it and be better prepared the next time around. Experience is a good thing so the next time someone asks whether they should disclosure, I can provide my experience to them and let them make that decision for themselves.
There is a new giveaway post at my review blog for Pamela Callow’s DAMAGED.
The winner of THE LIES WE TOLD has been announced. Click HERE to find out who won.
Last night, I braced myself for a nightmare fibro headache. The pins and needles feeling on the top of my head started and I knew that that would be the norm for the next few days. Two years and I finally figured out the difference between a fibromyalgia flare and rheumatoid arthritis flare (Can I be proud?). The only confusion is when they are both happening at the same time. Before the start of the impending headache, I was out by ten without incident. Usually, I find myself trying to fall asleep for at least two hours to no avail. When I arrived home in the evening, I asked my husband if it was Wednesday or Thursday. It was at that moment that I knew the fibromyalgia flare-up was coming. I felt extremely confused and the fibro fog was only the start. (And damn you, mail order pharmacy, where is my Lyrica? They said that I should have it today. I have not missed a dose but I only have one left. Probably my own fault for giving them only one week notice.)
As this morning rolled around, I coaxed myself out of bed at 6 a.m. so that I could arrive at work by 7:30 a.m. My children were unusually cooperative which was good since the fibro flare would have only sent me into a state of panic. At 7 a.m., I arrived at the daycare and set off the alarm in the building where the toddler and infant rooms are located (leave it to me to do such a thing). Apparently, the toddler teacher was running late. So, I dropped off both the boys with the older kids’ teacher and headed on my way to work. I grabbed an Americano from the coffee shop downstairs (from my office building) because I wanted something stronger than regular coffee. I was told by the young man who made the coffee that the Americano had less caffeine (Darn!) than regular coffee but its aroma and taste were much stronger (you learn something new everyday).
As I punched in for the day, it hit me that it was finally Friday. All week I waited for this day to come only to realize that my weekend usually ended quicker than my workweek. When did I get to a point in my life when I started sleepwalking through my life? Or had it been the norm for many years and I only now realized it because of RA and FMS in my life? I have often been told that I would make a great lawyer and I remind myself that that is in the cards regardless of RA and FMS. I am just waiting for the baby to be a bit older so I can go to law school and for my life to feel less stressful. (Less stressful? My husband says that will never happen.)
Meanwhile, my husband is walking around in a daze trying to contemplate his company’s future layoffs and whether he will be one of those people. My husband is a constant worrier and does not now to handle stress like I do. He also is often pessimistic so he is most likely jumping to conclusions for no reason. He told me that he felt he would be in safer position if he asked to be demoted. Twenty-plus years in the field of management and he wants to be demoted? This is the kind of economy we live in folks! Unpredictable to say the least. I remember growing up and my father working for both GM and Ford. There were layoffs all the time and we managed at least that is what I saw my parents doing. Now that I am the parent, I do believe we can manage like we always have – like I always have. My husband’s mind does not understand chaos and it is my mind that is the master of chaos and life management (He can manage a entire department but not our lives? Haven’t figured that one out yet.). Further, I know that my husband is blowing off steam over nothing but I won’t tell him that because I know my husband will never be as calm as I am under pressure. The guy freaks out if he can’t find the tie he needs on a certain day so I will let him walk around stressing himself over nothing because well, commenting will only make him worry more.
No word yet on that part-time position and the job ads aren’t actually full. It seems like no one is hiring so at some point, I have to start pulling together a game plan for talking to my supervisor about cutting my hours. (The things I don’t want to do? Welcome to my life folks!) My sister (the one that lives in NYC) is flying in tomorrow. She will be here for about a month and it will be nice to have another female in the house to commiserate with me. She also has two boys (ages 1 and 4) so my house will be Trouble Central (Yup, initial caps folks) and in addition to my toddler, they all know how to climb over baby gates. Hopefully, this fibro headache subsides soon because in 36 hours, my home will be filled with more commotion than I can handle.
The Diane Chamberlain book review and giveaway is still open. Tonight is the deadline. I am currently finishing up a Pamela Callow novel called DAMAGED and the review and giveaway post for it will be available at my new review blog on Monday morning. I have moved all my review posts there and all future reviews will be there as well. I can only handle so much chaos in my life. It is that darn Type A personality which refuses to get along with RA and FMS. In the meantime, enjoy your weekends and happy Friday!
As every reader of my blog knows, my life is complicated, full of twists and turns, and extremely busy. (That is why you come here and even an entire pot of coffee won’t allow it to make any sense either – alcohol too.) Two summers ago, I was pregnant with my toddler who turns two in September and a part of me wonders where the time went. Ten summers ago, I boarded a plane from Jerusalem, Israel with my now ten year old leaving another important part of me behind – a part that I relive often in black and white and not color. On July 6, 2000, I left an abusive marriage without my three daughters – not because I wanted to but because I had to. September marks two years since knowing about RA and Fibromyalgia after nearly ten years of misdiagnosis after misdiagnosis. I did not receive the official diagnosis until before Thanksgiving but it was a few days after giving birth that I learned that my life was forever changed (negative and positive). If anything, I have changed and so have my husband and my children. It is not a significant, but we are somewhat different than we were two years ago. My illnesses play a part in that and those subtle differences are not things we can ever get back.
For centuries, some of the greatest minds have tried to define the “meaning of life” as if it was some cosmic force. They should have just asked a small child, a parent, a grandparent, a 100 year old man or woman, a World War II or Vietnam vet, a funeral director, or even a doctor (or midwife) who brings babies into the world. Asking the meaning of life means asking questions like: What is life all about? Why are we here? What is the meaning of it all? Speculation from some of the greatest philosophical, scientific, and theological minds has led to more questions than answers because, in part, the answer depends on various cultural and ideological backgrounds. It is also a mixture of religion and philosophy especially in terms of existence, consciousness and happiness. It also touches on symbolic meaning, ontology (the philosophical study of the nature of being, existence or reality in general, as well as the basic categories of being and their relations), value, purpose, ethics, good and evil, free will, conceptions of and the existence of God, the soul and the afterlife. (There is a scientific contribution, but it’s usually indirect.) For most of us, the meaning of life has to do with ultimate reality and the perception of ourselves and its relationship to the world around us.
Plato believed in the nature of goodness and absolute justice. He felt that humans had a duty to pursue good and without reason to do so. Aristotle, a student of Plato, argued ethics and virtue and he felt that without these, people could not pursue goodness or justice. Socrates touched on moral actions and how moral actions affected the human soul. Immanuel Kant preached moral obligations and the duty that we have to others to behave with good ethics and morals and that we should always do the right thing even when the right thing isn’t the easiest choice. We have all been taught some version of the Golden Rule so we all know right from wrong and religion has played a part of the meaning of our lives whether major or minor. In the 19th century, Jeremy Bentham preached utilitarianism and told us that good should bring the greatest amount of happiness for the greatest amount of people (collectivism). The 20th and 21st centuries brought with it a variety of views, many that focused on the needs of individuals instead of society as a whole (individualism vs. collectivism).
For each person, the meaning of life is different. William Blank said that the meaning of life is: “A brief generic overview of why you are here, what your experience is all about and what it all means.” Perhaps it is simple as Blank’s definition or even more complex.
Have you seen the Monty Python’s movie, “The Meaning of Life?” It is divided into several chapters (life stages from birth to death) and it portrays life in an absurd and comical way, but somewhat realistic. Part 1 is titled “The Miracle of Birth” and involved a lady giving birth and being ignored by her doctors. Eventually, the doctors come in with a whole bunch of medical equipment and then, the baby arrives. Part 1 has a second part that depicts a Roman Catholic couple who cannot afford to feed their 63 children and the reason they had 63 was because the church forbids birth control. They start selling off their offspring for medical research. (Did I tell you that it is a comedy? Well, I just did.) This part also touches on taboo topics such as contraception, sexual intercourse, and masturbation. Part II of the movie is titled “Growth and Learning” and talks about life’s lessons including sex education. Part III, “Fighting Each Other,” touches on the concepts of war while it pokes fun at modern attitudes of survival of the fittest. The next part is called “The Middle of the Film,” where the stereotypes in society are discussed including racial profiling, sexual preferences, and sexual attitudes. Part VI is called “Middle Age” and features a middle-aged couple on vacation in a bizarre resort who order a conversation about the “meaning of life.”
Part V is called “Live Organ Transports” which pokes fun at card carrying organ donors, people stealing organs, and a businessman who suggests two philosophies: the meaning of life and that people should wear more hats. Part VI is split into two stages: we are first introduced to Eric Idle performing the song “Isn’t It Awfully Nice to Have a Penis?”. There is also a heavy set man who eats a huge meal and blows up. The second part is called “Part VI-B” and contains two philosophical monologues, the first delivered by a cleaning lady singing about how she is down on her luck. She makes a racial comment and has a bucket of vomit dumped on her and she is forced to apologize. The second monologue is delivered by a French waiter who walks through the streets to the house he grew up in and delivers a personal message: “The world is a beautiful place. You must go into it and love everyone. Try to make everyone happy, and bring peace and contentment everywhere you go. And so I became a waiter…. Well, it’s not much of a philosophy I know, but well… f**k you! I can live my own life in my own way if I want to! F**k off!” “Part VII: Death” opens with a funeral setup. It shows a criminal convicted of making gratuitous sexist jokes in a film, killed in a manner of his choosing and also a group of people visited by the Grim Reaper.
“The End Of The Film”, in which the female character from “The Middle of the Film” concludes the movie by telling us what the “meaning of life” really is (introducing it by saying “It’s nothing very special”): “Try and be nice to people, avoid eating fat, read a good book every now and then, get some walking in, and try and live together in peace and harmony with people of all creeds and nations.”
This meaning seems simple – doesn’t it? Despite the craziness in between, there “it’s nothing very special.” You can visit a 100 life coaches and they work with you to find out what the meaning of life is for you, but all reality, the meaning is anything we want it to be. We decide through our actions and our abilities. I am a deep thinker as many of you know, and sometimes I find myself questioning my actions and even my abilities. Many people accept the cards they have been dealt, but not me and I am not sure that I can. My grandmother died in her late 90s. She saw grandchildren, great-grandchildren and even great-great-grandchildren before her death. Maybe, she knew the meaning of life. I guess I should have asked her while she was alive instead of sitting here trying to ponder it.
Lately, I have been thinking about what I can do to better a person; a better mother and wife, a better employee, a better daughter, a better sister and aunt, a better friend, and an overall better human being. I also want to less stressed and healthier. The medications I take play on my emotions because they affect how I feel physically and mentally. They also make me gain weight and because, often times I ache everywhere, it is hard to be active. I realized this morning that I don’t want to gain anymore weight, I want to be able to be active again, and I want to feel healthy mentally and physically. With all the chaos in my life, it seems impossible, doesn’t it?
I heard back from the place I interviewed and they told me that they are still working to make a decision so I still have a chance. If not, I know that I have to cut my hours and put a plan in action before I talk to my supervisor. I know a lot of things including that patience and waiting are parts of my life that I don’t really like. By the way, I disclosed my health conditions in the interview. I told them about my advocacy work and how regardless of RA and FMS, I continue to live my life. I figured I would let the cards fall as they may. My condition is at point were I can still hide it, but it does not mean I will be able to hide it a year from now or even six months from. Growing up, my mom had to keep reminding that the best things come to those who wait especially when waiting led to my squirming and fidgeting because I just couldn’t stand still, and I haven’t changed. I hate sitting in traffic, I hate waiting for others to complete projects, and I hate waiting for news. I know that my inability to be patient is why I choose to contemplate the meaning of life. Others believe that life is about chance and fate. I believe everything – who we are and who we become – is about actions and hard work. The hard part is trying to figure who we are, who we want to become, and how we achieve what we want.
Don’t forget the latest giveaway. You have until Friday to enter.
Maya and Rebecca Ward are sisters who share many secrets. They both have medical degrees and they both share the memory of their parents’ brutal murder. The Lies We Told reveals that all people have secrets and some secrets are those that we don’t even tell the ones closest to us because of the pain that those secrets hold. Diane Chamberlain’s latest novel reveals the complicated nature of the relationship that sisters have and the secrets that they keep; secrets that will either bind them together or tear them apart.
Maya was fourteen and Rebecca eighteen when they witnessed their parents’ brutal murders. As a result of that tragedy, Maya becomes timid and cautious and Rebecca a risk taker. After a devastating hurricane hits the coast of North Carolina, Rebecca and Maya’s husband, Adam, urge Maya to join them in the relief effort with Doctors International Disaster Aid (DIDA). To please her husband, Maya agrees. Maya is on a helicopter transport to a nearby hospital when the helicopter crashes into powerful floodwaters and there appear to be no survivors. After a two week attempt to locate any survivors, Rebecca and Adam must accept that Maya is gone. As time passes, they turn to one another for comfort and then find themselves romantically attached. Meanwhile, miles from civilization, Maya is alive. She is rescued by strangers whom she is sure is not sure she can trust. She struggles to make her way home not realizing that her life is forever changed.
Diane Chamberlain writes in the first chapter that every family has a story filled with secrets unknown to outsiders. In addition, each member of the family holds their own secrets. The problem with secrets is that they are “the lies we tell others” and “we tell ourselves.” We all keep secrets for several different reasons. One is to protect ourselves and the other is to protect the ones we love. The problem with secrets is that they have a way of coming out and usually when we least expect them to and Chamberlain reveals that we can never really hide from those secrets because they continue to tear us apart inside. She describes the memory of Maya and Rebecca’s parents’ death as “unfinished business” because there was a lot “left unsaid between” them. The circumstances of that murder unfold when Maya and Rebecca are forced that accept what has happened; Rebecca believing that Maya is forever lost, and Maya seeing life in a way she never anticipated.
You can read an excerpt from the book at Diane Chamberlain’s website.
Diane Chamberlain’s The Lies We Told is available through, Amazon, Indie Bound and most book stores including Barnes and Noble.
The Lies We Told is an amazing story about two sisters, who as different as they are, are bond by the witnessing the murder of their parents. Diane Chamberlain reveals bits and pieces of the events that led to the murder of the girls’ parents with each sister carrying around a burden of guilt and personal blame and you will never be able to guess what those secrets are. Moreover, the ending is a shocker but you have to read the book to find out. Diane Chamberlain has become a must read author for me and I am sure you will be hooked by just picking up one of her books. The Lies We Told does not disappoint.
To enter to win a copy of The Lies We Told, please leave a comment letting me know who your favorite fiction author is and your favorite novel by that author. (My favorite is “Black River” by Dean Koontz.) Please leave me an email address so that I am able to contact you. For an additional entry, you can tweet this giveaway to OhBoy_Boys.
This Giveaway will end Friday, June 25, 2010 at 11:59 p.m. so get your entry in by then.
The Winner will be chosen by Random.org. I will post the Winner here and I will you email directly. You will then have 48 hours to claim your Prize. U.S. and Canadian addresses only.
Logo/Images Courtesy of 2010 © Diane Chamberlain, YouTube.com
This morning I woke to a grim reminder that my rheumatoid arthritis is here to stay. My hands were clenched together into fists. My left shoulder was stiff and numb and I was having shooting pains that started into my left shoulder going into my fingers. When I have good and okay days, I forget that RA is a part of my life. The stress I have endured in the last couple of weeks has finally allowed my RA hit all ultimate high. I knew last night when my head finally hit my pillow that tomorrow would be worse.
The thing that RA does not understand is that life won’t stop because RA wants to kick me, punch me, and make sure I stay down. RA does not get that my children rely on my me, my job needs me to be focused and fully functioning, that I only have three sick days left through the end of the year, my RA does not understand that I hate a sink full of dishes or a smelly fish tank, my RA doesn’t understand that I have assignments due for my master’s course, my RA does not understand that I have to take my son to his swimming classes, or that I have to get up in the middle of the night when my toddler has a nightmare. My RA wants to push me down and expects me to stay and as much as I would love to stay down, I can’t and it is very frustrating that I can’t.
This morning I was reminded yet again how ugly RA feels. My body was too swelled to pull itself up and my hands were no help considering they were clenched together. All I wanted to do was make it to the bathroom to massage my hands with warm water and just get all the stiffness out and whatever else my joints were doing to stop. Needless to say it wasn’t pretty and I never felt so ugly in my life. This is the worst part of the disease and any sufferers know all too well that these days are the days where it makes sense to hide under your covers. The rest of the world – our families, our friends, our co-workers, our bosses and strangers we pass everyday – doesn’t know this part or any of the ugly parts. They don’t live in our bodies and for all they know, we feel the same way they do. They don’t stop in their tracks because their legs suddenly stop moving or because they are having sharp pains in places where they never expected they would.
Am I productive today at the office? No, but I am here in body, but not in mind. Per the usual, I read my horoscope after I signed into my computer. Just so everyone knows, my horoscope is right 9 of 10 times. Today was one of the nine times.
Your horoscope for June 17, 2010: Women Capricorns are a lot like CEOs, whether they really are in that kind of position, or whether they just act like it. They are good at giving orders and being authoritarian, and devote themselves entirely to their work until the job is done. They are so busy, in fact, that others people may wonder if they even take the time to eat or sleep! Today’s celestial energy will help you to better care of yourself, Lana.
I really hope today’s celestial energy is in my favor. Sometimes, I wish I wasn’t born a stubborn Capricorn. Thank you for your comments in yesterday’s post. A part of me wanted to be told that everything would be okay if I went part-time. I have made a decision that if I do not hear back from the company I recently interviewed with, I would find some courage to speak to my supervisor and lay my cards out on the table, and let them fall as they may. I know that financially we will be fine; I just have to learn to be more frugal. I know that my husband doesn’t quite understand what I am going through with being all the things that I am in addition to being sick. He is used to my being confident and giving a Superwoman persona and I know that he fears my being any less that person. My husband is a Taurus and he spends a lot of his time looking to the future instead of living for today. The future scares him and because of that, he likes to prepare himself for it. He doesn’t know how to live in the present so when things fall apart, he doesn’t know how to swerve. Swerving and living in the unpredictable – that is my expertise. It is no wonder I get up when RA pushes me down. RA knows I am level opponent and it keeps trying to make me weak and I know that if I keep stressing myself, the playing field won’t be continue to be horizontal.
I read an article this morning titled “Rheumatoid Arthritis Has Negative Impact On Women’s Relationships.” The article sites an study out of the University of Leeds (UK) with research funded by the European League Against Rheumatism (EULAR), an organization which represents the patient, health professional and scientific societies of rheumatology of Europe. The study found that rheumatoid arthritis puts a strain on the personal relationships of women. In fact,
• 40% of single women with rheumatoid arthritis encountered problem with finding life partners.
• 22% of divorced or separated women singled out arthritis as the major decision for separation from their marriage.
• 68% of women of women reported that they hid their pain to those closest to them.
• 67% said that they continuingly were looking for new ideas to address their pain.
The study also looked at the impact on the disease and pain as it affected productivity at work. Nearly three quarters of the participants reported that they are less productive because of the disease.
I have no comments except that RA sucks. A friend of mine emailed me something that made my day. She said that it made her think of me. (Girlfriends rock!) Anyway, thanks everyone for listening (reading) and allowing me to vent.
Women have one flaw
They have strengths that amaze men….
They bear hardships and they carry burdens, but they hold happiness, love and joy.
They smile when they want to scream.
They sing when they want to cry.
They cry when they are happy and laugh when they are nervous.
They fight for what they believe in.
They stand up to injustice.
They don’t take “no” for an answer when they believe there is a better solution.
They go without so their family can have.
They go to the doctor with a frightened friend.
They love unconditionally.
They cry when their children excel and cheer when their friends get awards.
They are happy when they hear about a birth or a wedding.
Their hearts break when a friend dies.
They grieve at the loss of a family member, yet they are strong when they think there is no strength left.
They know that a hug and a kiss can heal a broken heart.
Women come in all shapes, sizes and colors.
They’ll drive, fly, walk, run or e-mail you to show how much they care about you.
The heart of a woman is what makes the world keep turning. They bring joy, hope and love.
They have compassion and ideas.
They give moral support to their family and friends.
Women have vital things to say and everything to give.
HOWEVER, IF THERE IS ONE FLAW IN WOMEN, IT S THAT THEY FORGET THEIR WORTH.
I read my horoscope every morning. Sometimes, I ignore it but most times, I realize how right on point it is.
Your horoscope for June 16, 2010: You have probably noticed that you have a tendency to use up a lot of your energy just maintaining the status quo and staying concentrated on your work or in your relationships with your family. However, for you the only way to personal fulfillment is to be perceptive about things and more mentally active. Lana, you need to get this situation back under control, and see exactly what is preventing you from being as active as you would like to be.
Yesterday, I interviewed for another part-time position. I had put the job hunting issue aside because I had so much going on and even though I knew that enough I needed to cut my hours down, I really did not have time to interview. A part of me knows that I have to stop trying to please everybody in my life and start thinking about me, but it is easier said then done. My husband commented last night that there were some meals that I had not cooked in awhile, even one that I had not cooked in over a year. I looked it at him and said that I did not remember the last time prepared something that did not come out of a box or the freezer. Mind you, I love to cook and I have ideas left and right about the subject. I have a collection of cookbooks that has not been opened in nearly a year. It is not just the cooking healthy meals for my family issue that has plagued me. My home is not as organized as it used to be and I don’t spend as much time taking care of myself as I used to. Heck, I don’t remember what a good night’s sleep feels like. I am not as active as I used to be because I am constantly running in a 101 different directions and well, I simply don’t have the time.
I have written several times on my blog that I know what the problem is, but I am too tired to take action. A part of me understands all too well that I have to either work part-time or quit school, and another part of me does want to give anything up. I only have four courses left to get my Master’s Degree (the one I am currently taking is the fifth). In fact, I should have my degree by the time the New Year rolls around. Process of elimination tells you what the best decision would be. However, no matter how many times I crunch the numbers and I know that we can afford for me to cut my hours, I still fear that I may be making a mistake. The other issue is that I do not have anything solid. My current employer will not be willing to offer me part-time hours and if I went part-time, the commute downtown and the $100 I pay for parking per month would not be worth the trip downtown. In fact, the position I interviewed for yesterday was less than ten minutes from my home. My current commute is 40 minutes in rush hour traffic (and don’t add the many accidents that happen during rush hour to that time).
Additionally, my husband is not supportive of my decision to work part-time. He is concerned about his own job and feels that if he were to get laid off, I would still have a fulltime position that would give us medical benefits if needed because currently, our benefits come from his employer. I love my family and I fear such an outcome but I am not any good to my family if I am mentally and physically worn out. I get where my husband is coming from but my husband goes to work and comes home; he does not deal with anything in between. He has no second or third shift. Most women in this country bear of the burden of the family and the home while holding full and part-time jobs. Unfortunately, not much as changed on the domestic front more than fifty years after women entered the work force.
My baby brother sent those words to me by text on his last day of high school about ten days ago. Those words brought tears to my eyes and today, as I watched him graduate, I tried to keep my tears hidden. When they called his name, I wasn’t sure if I should laugh or cry because of the road that led him to the “rest of his life.” First, I want you to know that I played a role in his upbringing and he is an important part of my life. I am so very proud of him for being ALL (yes with all caps) that he is despite all the obstacles were in front of him from the day that he was born.
I was almost sixteen when Kam was born. My father became ill when my baby brother was four months old. My mother spent the next four years at my father’s side and taking care of him through his long illness. My father died a month after Kam turned four. From the moment my father became ill, my sisters and I, ages 18, 16, and 15 became Kam’s primary caretakers. After my father’s death in 1995 (my brother was only four years old), my mother found herself distant from Kam so my sisters and I continued to take care of our baby brother even after we have moved on with our own adult lives. For every important event in my life, Kam was an important part and I treated him as I did my own children. My youngest sister who is six years younger than me took care of him after we, the three oldest girls, moved out and even though the three of us were involved his life, she was the one who took care of him at their home.
My mother remained distant and never really had a relationship with him because my father’s needs prior to his death and then his death remained heavy on her mind. Further, my two other brothers, who were 15 and 16 at the time of my father’s death, were getting in all sorts of trouble by rebelling and keeping my mom busy so she never really had a relationship with Kam. In addition, she was struggling financially and she had a lot of worry about. As the years went on, my mother became more and more distant so everything that Kam needed fell on the shoulders of his older sisters and we took care of him as we did our own children. In a sense, my sisters and I were the only “parents” he ever really knew and he has never forgotten that especially on Mother’s Day.
So fast forward to 2010 as his name is called as a graduate of the Class of 2010, I think about how wonderful he turned out despite not having a father in his life, a distant mother, and older brothers who were never around. No male influence in his life and he turned out to be amazing – would you believe that? He graduated with honors, even though he worked every evening, six nights a week. Moreover, he was accepted at a great college (two hours away) with most of his education covered by scholarships. I know that my sisters and I played a role that but he could have given up at any time due to the lack of support from my mother and brothers, but he choose not to and for that, I am grateful today and I am so very proud.
I decided that I would blog about him and his accomplishment so every one of you would see what a great young man he turned into despite the 101 obstacles in his way. I am so very proud of you, Kam and I know that you will continue to make us proud, baby brother.
I found this at a website called FMS-Help.com. This letter explains fibromyalgia better than I can. If you have fibromyalgia and you are having a hard time getting those around you to understand, please share this letter with them so that they can better understand.
If you were born with healthy genes, you may know me but you don’t understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn’t know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you
WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA
1. FMS is not the newest fad disease. In fact, it isn’t a disease at all, and it isn’t even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.
2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an “all in your head” disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability. 3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.
WHAT YOU SHOULD KNOW ABOUT ME
1. My pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.
2. My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
3. My forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.
4. My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
5. My sensitivities – I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the “aggravating everything disorder.” So don’t make me open the drapes or listen to your child scream. I really can’t stand it.
6. My intolerance – I can’t stand heat, either. Or humidity. If I am a man, I sweat…profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.
7. My depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
8. My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
9. My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.
10. My need for therapy – If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.
11. My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.
12. My uniqueness – Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.
I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.
Author’s note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn’t want to spend even a day in their shoes… or their bodies.
There is no question that with the blessings of fame come many burdens and chronic illness don’t just affect average folks like you and me, they affect the rich and famous as well. I thought I would share with you some of those famous persons that have been afflicted with chronic illness and/or autoimmune disease.
Desperate Housewives star, Marcia Cross (Bree Van De Kamp), suffers from painful migraines that go back to her teen years. She is one of the 28 million Americans who suffer from painful migraines and anything can trigger these headaches, whether it is the weather or a stressful day.
Elizabeth Taylor was born with scoliosis which causes an unnatural curvature of the spine and as a result; she has suffered from back pain for years. Moreover, she has been addicted to pain medications, alcohol and sleeping pills. One out of every three people has some form of scoliosis.
Susan Flannery, who played Stephanie Forester on the Bold and the Beautiful, took a leave of absence due to severe fibromyalgia flare-ups in 2007. Fibromyalgia is a common condition characterized by long-term, body-wide pain and tender points in joints, muscles, tendons, and other soft tissues.
Actress and Comedian Lucille Ball had rheumatoid arthritis since the age of 17 but it did not keep her from pursuing her dreams. Rheumatoid arthritis is a long-term disease that leads to inflammation of the joints and surrounding tissues. It can also affect other organs.
The famous French painter Renoir also battled rheumatoid arthritis for nearly three decades of his life. His first attack happened in 1898 and his joints became severally deformed. By 1910, he was confined to a wheelchair and his deformed hands looked like bird claws. Despite this, he continued to paint and produced some great masterpieces.
Bernie Mac lost his battle with sarcoidosis in 2008. Sarcoidosis is a mysterious and sometimes devastating immune system disorder that causes cells to cluster and damage organs throughout the body. He had been battling the disease since 1983 but it did not stop him for nearly 25 years.
Mary McDonough, the actress who played Erin on the Waltons suffers from Lupus, Fibromyalgia, and Sjogren’s. Lupus is a chronic disease that, for unknown reasons, causes the immune system to become hyperactive and attack the body’s own tissue and organs. At least 1.4 million Americans have Lupus, 90% of who are women. Even though she had served as the spokeswoman for Lupus in the late 70s, McDonough was not diagnosed with lupus until 1994. In addition to Lupus, Mary has Fibromyalgia (painful muscles) and Sjogrens Symptom (a collagen disorder causing dry mouth, eyes or skin).
Rob Thomas’ wife Marisol also has lupus. The song “Her diamonds” was written by Rob to explain the difficulties that his wife has endured struggling with lupus and his inability to try to understand her struggles with the disease.
For a complete list of celebrities and other famous people who have been affected by autoimmune disease or chronic illness, visit the WEGO Health website.
For those of you who asked or have been wondering where I have vanished off too, I was visiting my dear friend Waldo and having everyone I know looking for me. Okay, I wasn’t visiting Waldo because like the rest of you, I have not been able to find him. What I can tell you is that I have had many BUSY days. They have been outrageously busy, thus the reason I am shouting with all CAPS.
My firm had its annual Cedar Point trip which at this point is getting really boring if you ask me. How many years can we keep going to the same place? The good news, however, was that I did not wake up with the same amount of pain that I did the previous year. If anything, I am just a little sore. One of the things I constantly pray for is remission, and not just for me, but for the countless others who struggle with this disease. The pain of this disease is not the worst component. That would be the emotional factors that come to play living with any condition that wrecks havoc on your quality of life.
The physical aspects of arthritis come in the form of pain and other symptoms. However, many people, including doctors, do not realize the role that the physical symptoms play on the emotions and vice versa. On a physical scale, symptoms include chronic pain and fatigue, limitations, loss or ability and other health conditions. When the disease starts to take away your ability to do things for yourself or limits you, you start to realize the emotional aspects of the disease because over time, you see the role the disease plays on your abilities, responsibilities, relationships and personal identity.
Specific emotions that your arthritis condition brings with it include fear, denial, relief and frustration. We fear the long term prognosis of our conditions. We try to deny the disease’s ability to win in order to cope. In doing so, we participate in activities to worsen our symptoms. The relief we feel comes from knowing what is actually going on but that relief is always temporary considering there is no cure. The worst of these emotions is the frustration that we have limitations, the constant fatigue, and that we lose certain abilities, including mobility and other physical changes to our body (i.e. weight gain).
Lifestyle Changes, Unfairness and Anger
Emotional factors are an adverse effect of making changes our lifestyles in order to be able to live side by side with our conditions. This is not the just when we first get our diagnosis but these feelings come and go depending on our symptoms. The “unfairness” of it all – this includes the “why me’s” and envy or jealously that others do not have the condition and we do. Then, there is anger: anger at the inconvenience that illness has brought to your life, anger towards the attitude of the medical community, and anger at family and friends that just don’t seem to understand. We also feel angry at families and friends if they hover over us, try to control us or somehow give us the idea that they want to take away our independence. That anger is not something we feel everyday but it is something that comes around sporadically.
Anger also comes because we no longer control major aspects of our life like the ability to make plans because our symptoms are always on our minds. Loss of control also forces of to make career changes, change plans or goals and it disrupts our families’ lives. We feel depleted and robbed by our health. We start to feel helpless, sad and even depressed. We mourn the fact that our lives have changed due to factors that our not in our control and we mourn every time the disease takes something away from us. We also mourn an overall personal loss. Again, we don’t feel like this everyday but now and then, we need pity parties.
Coping, Acceptance and Hope
I am guilty of every one of these emotions. I worry about the future, I think about the present, and I grieve the past. At the same time, I cope, I look for acceptance, and I have hope. I have learned to cope because I have developed some great relationships through blogging, through Arthritis Connect, through educating myself about my conditions, through talking to loved ones about how I feel, and working with my doctors on managing my health. It has taken nearly two years but I am getting there. I am learning how to live with this disease, how to work towards more good days, and how to solve even the most difficult problems that my conditions have brought to my life. I have learned acceptance and I know understand I cannot fight my condition, but I can work everyday to live with it through my many treatment options, eliminating stress in my life and prioritizing. The most important thing I have learned is that my attitude plays an important part in living with chronic illness. I have learned hope and I have learned it by watching my children and leaning on their love. Nothing else matters but being their mother and I cannot do that if I am sick. Hope allows me to see that there are treatment options and that there are ways I can improve my quality of life. We all need to find our “reason to hope” in order to want to work towards better days.
Like anyone else, I have my “good” and “bad” emotional days and these are there in all of our lives – healthy or not- where we feel like there is a black cloud hanging over us. That is just part of life and maybe it is little harder for those us living with and dealing with chronic illness. We doubt our beliefs and we find certain skepticism about the world and life in general. However, those feelings are the last step before breakthrough. We need to find a way to get our endorphins (take a walk, a jog, etc.) moving, to clear our heads and try to make sense of it all. We all go through this – we just have to know when to put it all aside.