Many times on this blog I have mentioned that I am big Jack Bauer/24 fan – one that has watched from the very beginning. I am very sad that the last episode (forever) of 24 aired Monday and I just wanted to highlight some of my favorite 24 memories.
(1) Jack’s Testimony
No one knows how to tell off a smug politician like Bauer and he got to do it in the first hour of Day Seven. During a Senate hearing on “human rights violations” perpetrated by CTU and its agents, Jack is brought in to testify.
Senator: Did you torture Mr. Haddad?
Jack: According to the definition set forth by the Geneva Convention, yes, I did.
Jack: Senator, why don’t I save you some time. It’s obvious your agenda is to discredit CTU—
Senator: My only agenda is to get to the truth!
Jack: I don’t think it is, sir.
Senator: Excuse me?!
Jack: Ibrahim Haddad had targeted a bus carrying 45 people, 10 of which were children. The truth, Senator, is that I stopped that attack from happening.
Senator: By torturing Mr. Haddad!
Jack: By doing what I deemed necessary to Protect innocent lives.
Senator: So basically, what you’re saying, Mr. Bauer, is that the ends justify the means, and that you are above the law!
(3) Edgar Stiles’ death
Edgar was likeable and he was the one character the audience could relate to. He was usually stepped all over, but he also stood up for himself when he was pushed way too far and he cared for Chloe dearly. On Day 5, terrorists released Senotex nerve gas at CTU. Some of the personnel made it into airtight rooms. As Chloe seals the room she is in, we see Edgar stumbling into the main control area. Chloe and her fellow coworkers that are in the sealed room watch as Edgar dies from nerve gas poisoning. Edgar’s last word was “Chloe.” I got all choked up there as I watched Edgar die and the look of horror in Chloe’s eyes.
(4) The Voiceover at the beginning of Season 1
For the first time, we hear Jack Bauer say: “The following takes place between midnight and 1 a.m. on the day of the California presidential primary. Events occur in real time.” Those last four words really sent a chill down my spine and it was unique because it was the first a series did not cut ahead or flash back. My ten year old says that it always creeps him out.
(5) Teri’s Death
Nina kills the person who discovers she is the mole. That person is Jack’s wife, Teri. One thing we have learned about 24 is that good guys don’t always get a happy ending and this was just the start. The end of day one was the most emotional moment of Jack’s day. You really felt with him when he held his wife’s limp body and cried, “I’m sorry” as the clock ticked to midnight. Every season I root for Jack and every season Jack’s day ends hellish.
Poor Jack. Maybe, he will have some happy endings when the 24 movie airs on the big screen.
What were your favorite 24 moments?
When my mom used to utter the words, “They grow up so fast,” she would say it with tears in her eyes. Now it is my turn, and I have learned to say it with tears in my eyes and big ache in my heart. No one told me about the big heartache. I had to figure that out when I became a parent, when realized how fast they do grow up. My ten-year old is finishing up fourth grade and in about ten days, he will be “almost” a fifth grader. When I dropped him off this morning, I watched him climb out of the car and walk away with confidence and for the first time, it finally hit him how grown up he really was. He wasn’t that scrawny and shy fourth grader that I dropped off at his new intermediate school in September. He was taller (two inches shorter than I am – to be exact), his shoulders were wider, and his confidence level is something to be admired.
A part of us, as parents, wants to believe that they stay “little” forever. I remember the first time I got one of those “they grow up so fast” moments. That ten-year old had just turned three, was all potty trained, and graduated from the toddler room to the preschool room at his daycare. I remember him “reminding” me to pick up his blanket and pillow, because “big kids don’t nap, Mommy” is what he told me. I dropped him off in the “big kids” room and went to pick up his blanket and pillow. By the time I got back to my car, I was in tears and balling like a baby. For the first time, I realized that bundle of joy that I brought home from the hospital three years prior was growing up (whether I liked it or not) and before I would know it, he would be an adult, and that really scared me. It still scares me and now, I am not having one of those “they grow up so fast” moments, because those moments are turning into “all grown up” moments.
Like all parents, I cannot and do not want to believe that my kids are growing and changing. And yes, they do grow up fast. They grow, they change and they mature. As much as it scares me, they will grow up and they will turn out just fine, and yes, I will never stop being so darn teary eyed at every milestone in their lives. That is what a mother does. Now, I am not saying that there are days I don’t wish that they were older because things would be easier me, especially those days when I am ready to pull my hair out. There are days when I wish for quiet mornings or for a full night of sleep, but then I realize that those things are not as special as they are. There is a Trace Akins song that brings me tears but reminds of why I am here. It is called “Then They Do”.
A few days ago, my ten year old found out that his best friend was moving and I could tell that he was really hurting despite the fact that he was trying to hide it. I told him that I knew he was sad but that life is all about changes and moving on. Things never stay the same and we have to learn to move forward regardless of how difficult or painful it can be.
I recently found out in the last day or two that another dear friend of mine had recently lost her mother in late February. She had also lost her father in November. She lives in another state and we not been in contact since about October because my life had gotten busy in recent months. My friend and I used to live in the same city but our contact had slowed down since I moved away from Pennsylvania two years ago. My friend did not tell me of her mother’s passing (or her father’s – their deaths happened only four months apart) because as many of who have experienced death know, it is surreal and takes a long time (sometimes many months or years) to fully grasp what has happened.
My friend’s mother lived her life with grace, confidence and humility. In 1944, she and other members of her family were deported to a Nazi death camp in Poland. All but she and her sister-in-live were killed. In 1945, her camp was liberated and within days of that liberation, she sought work and a new life in Germany. In 1946, she met an American solider who was working for the UN Relief and Rehabilitation Administration in Hanover on refugee resettlement. They married in 1947 and moved Switzerland where her husband graduated from medical school. They eventually settled in Wallingford, CT where her husband practiced medicine and they had three daughters. She was the kind of woman who lived her life with pure happiness and she always shared her happiness with those around her. Even though she was a “survivor,” she never wanted to be remembered that way. In the 1990s, she located many of her U.S. Army liberators and personally thanked them. She and her husband moved to Pennsylvania to be closer to her daughters in 2005.
My friend’s mother was someone who made me feel welcome after I moved to PA in 2003, a state where I had no family. She always made my son and I feel like part of her family. She was warm, kind, loving and generous and she will be missed dearly. I wanted to share her story because she was always good to me and also because her story is one of humility. One of my favorite quotes is by James M. Barrie. “Life is a long lesson in humility,” and my friend’s mom was a woman of true humility.
What it all means
Humility is a part of living life and it isn’t about our chaotic and busy lives. It is the lesson learned and the road travelled. It is all the in the stuff in the middle of everything that comprises of our lives – who are we are, who we become, and why. Humility is how and why we live our lives and the rest is what change is about – memories, stories, living and dying. Humility is why we are remembered and mourned after we are gone.
A week ago I noted that I was focusing on eating healthier and getting my family to eat healthy and I have been working towards that for an about a month now actually. I also stopped bringing soda drinks and juice into the house because empty calories are pointless. I have cut down on coffee and I am working toward quitting that as well. At home, I am preparing healthier meals and we are eating out less.
One of my main considerations when I decided to change my diet and my family’s was my RA symptoms. I noticed my RA symptoms were improving prior to the diet change due to a balance in my medications. I am currently on Plaquenil(Hydroxychloroquine) 2x daily Sulfazine EC (sulfasalazine)2x daily and Humira (adalimumab) injection – one every other week for my RA and Lyrica 2x daily for my Fibromyalgia. When I noticed the decrease in symptoms, I knew that I could do better so I decided my diet needed a makeover.
In recent months, mostly because of advocacy work at Arthritis Connect, I have done a lot of research on exercise, diet, and treatment plans so my mind is lingering with information. However, I have a busy life and planning meals, dieting, and finding time to exercise really don’t fit into my schedule. But I believe, there is always a way to achieve goals if you are creative. It is not really complex to change the foods you are bringing home. After all, you are still taking a trip to the grocery store.
Well, the change in food choices has made a difference and offered an ever bigger difference in my symptoms. I have seen more pain free days in the last two months than I have seen since being diagnosed. I also just finished up my latest master’s degree course and I am free until June 9. I am, however, cleaning my carpets this weekend. I have guests coming over for the holiday and it is a task that is long overdue. With the carpet cleaning, cooking and additional cleaning, and guests, I am sure to crash, but the good news, I know what to expect and I have finally learned how to work around that. The only thing I will be doing Saturday is cleaning carpets because the rest of the tasks are a work in progress. In other words, I will pace myself with smaller tasks and shorter periods. (I also have to catch up on NCIS and 24 because I have episodes waiting on my DVR.)
In other news . . .
We did get to see the Shrek movie over the weekend in 3D, so if you have been contemplating watching it, it is worth the cost. The 3D movie is about $5 more than the 2D one, but if you can, pay the extra money.
This morning, I watched my ten year old skipping and cheering quietly “Eight more days until the last day of school.” (Ten year old boys are an interesting breed.) I remembered my previous post about the home I grew up in and I sighed. As much as it saddens me that they growing up so fast, I welcome it as I am sure my mother did. It is just part of the cycle of life.
The older I get the more I realized how content I am with my life – not the part about the bills, debts, and responsibilities, but the part about what matters most. I guess I am starting to look at the world in the way that mother does. Remember when we were kids and we promised we would never turn into our parents. So much for promises . . .
Sometimes I view my life as if I am a stranger looking in or as if I am reading a novel or watching a movie. In so many ways, I am not sure I truly believe what I am seeing. That is when I realize how content I am. I am not sure that there is anything more that I could have asked for. I have a solid marriage, wonderful children, a decent paying job, a home, and my kids are well-fed. My sisters tease when I say things like this; they tell me it’s the meds talking. Maybe I am just practical or maybe it is the lesson that chronic illness teaches us. For me, the sun is much brighter than it was two years ago and the colors are the world stand out more. I have changed and sometimes, I feel like I was someone else two years ago. Is it really that the world is brighter or do I just need new glasses? Whatever it is, it works for me.
How has chronic illness changed you?
Recently, I found myself driving in front the house that I grew up in until was in high school. I stopped, parked across the street and just stared at it. My parents sold it when I was fifteen because my father had gotten sick, could no longer work, and they could no longer afford to make the payments. I had completely forgotten that we had lived there until it was right in front of me. For whatever reason, I had forgotten that house. For the next few years after the sale, my parents rented, and my mother did not purchase a new home until years after my father’s death, and it was something that she wished she was able to do when he was alive.
I choose to forget that house because it was a time when all of us were together – my father, my mother, and my siblings and I (seven children) living all under the same roof. A couple years later, my older sister got married, and I married about couple years after that. Less than a year after I married, my father passed away. Slowly and one by one, we grew up and moved away. Today, it is just my mother and my baby brother under the same roof and he heads off to college several hours away in late August. Then, it will just be my mom and the seven of us coming and going with her nineteen grandchildren.
For me, it seems normal that we all moved on and away, but for my mom, it seems so surreal. In few months, she will be all alone in that big house, a home that did not include my father and all her seven children (only five of her children actually lived there because my older sister and I were moved out when she purchased it).
I have never understood my mother and she and I have never seen eye-to-eye. We disagree about everything from raising children to the role of a woman in this world. But she is my mother and if anything, I get my resilience and strength from her. She tells me she is content that she raised seven children and that they have all gone on with their lives, but in her eyes, I see a different story. I see a woman who wishes she could go back to the days when we lived in that white four-bedroom colonial – the one with the family room when you walk in the front door, a warm and welcoming kitchen, winding steps in the middle, the four bedrooms on the second floor that faced each other, and that finished attic; and the home where my father’s memory still lives and where all her seven children were all one under one roof.
Now that I am a mother I can relate and I can understand. I want to hold my children close by and I wish that they could be little forever. However, I know that one day, I will be in my mother’s shoes wondering where the years went and at the same time, proud of who my children have become. My mother was a homemaker all her life and in my eyes, she was very successful. She raised seven children who all turned out to be hard-working and decent people. If that is not success, I don’t know what it is.
It has been quite a few days since I last posted and it is mostly because I have had a really busy week. I sometimes post several times a week and sometimes only one or two per week. I think that my posts are going to go down to once or twice a week for the sake of my own sanity. Blogging takes up a lot of time as many of us know so I need to cut down.
Yes, my week has been very busy. On Monday evening, I had to get rid of that abscessed tooth. Because it had a root canal done in it, it was very long and traumatizing procedure. With you have joint and muscle pain, the last thing you want to get is spend a half hour getting a tooth pulled. If a tooth has had a root canal, it will split into pieces when it dentist attempts to pull it. Three days later, the area where the tooth was pulled still hurts. The good news is that is the last tooth in my mouth and my dentist says I do not need an implantation.
The boring story behind the loss of this tooth is that we could have prevented it. The problem was that I did not want to do dental work while I was seven months pregnant. It started as simple cavity and then, by the time the baby was born, the tooth needed a root canal. I was a new mother with a newborn at home and the last thing I wanted was to go into see the dentist. Plus, I was dealing with a nightmare RA flare-up, and I could barely take care of myself. That was also the time I received my RA and FM diagnoses. Needless to say, I was not able to see the dentist until April of last year which was about eight months since the tooth needed a filling. At that point I needed a root canal which the dentist was not sure would hold but he convinced me that I should make an effort to save the tooth. About a few weeks ago, however, I started getting migraines. Then there was the facial pain, neck pain, eye and ear pain, and fevers. The tooth pain was the last to come so I went in to see the dentist who told me the tooth was toast. He put me on antibiotics and ten days later, the tooth was pulled.
I lost a tooth because I refused to put my baby’s life in danger when I was seven months pregnant – anyone can see that I do not regret my decision. It was a tooth and it was not worth risking my baby’s health. That is life – we make choices and well, our kids come first. When it comes to our kids, it is always worth the risk to us. Like any mother, I would put my own health at risk before my child’s. So when my Indian dentist (my son calls him “Kumar” as in Kal Penn from Harold and Kumar) says, “no, no, you should not wait,” I can say “yes, I should and I will.”
I have also been working on my final paper for my family law course which is due next Tuesday. It is about creating parenting plans that meet the best interests of children pursuant to Ohio law. Yes, the topic is boring – I know. The legal field is boring and as am I. I have read about fifty custody cases in the process of doing this assignment, and I cried more than I have cried in my entire life. I am a crier – I can’t help. Divorce is messy business and I say that from experience. It is even more difficult when children are involved.
Then, there was Tuesday evening when I picked up my ten year old from daycare. He was having joint pain which eventually by bedtime escalated to all over pain. He spent the whole night moaning and I was scared to death. He could barely walk in the morning so I called off work and we went to see his doctor. He took ibuprofen in the morning so that lessened some of his pain. I was told it was “growing pains” but the doctor ordered blood work to rule out arthritis and other conditions. But, I was scared to death. I remember when I was growing up and my mom took me to doctors and they would tell her “growing pains;” she disagreed with them and she was right. So I cannot take any chances. This is something I have to be on top of.
Aside from the usual hectic nature of my life – motherhood, work, school, and advocacy – my moods are better. Perhaps, it was the tooth all along. I am less tired and I did not really use the pain meds that the doctor gave me for the tooth pain which means I am either nuts or I have a higher threshold of pain than the average Joe. (Anyone want to buy a Vicodin? – Nah, I am kidding – my pain meds aren’t for sale.) I will be catching up everyone’s blogs in the next couple of days so be patient.
I put the job search aside because it is really hard to do with my life being so crazy. It is really stressful and I know need to really be working part-time but perhaps, I can convince my current employers later on. Right now, I still have bills to pay and IRS knocking on my door (another story). We also got this new social media policy at work and basically, we were told to be careful what we say online. (Yes, I deleted a couple posts – to be safe and all).
We are going to see Shrek Forever After on Saturday evening. My ten year old is excited and he is taking his best friend. I am taking the toddler (as my date), who is picking up new words everyday, while the two best friends fight like a married couple. (Tell me how they can be best friends when they fight all the time and even say they hate each other. Is it a boy thing? Ten years – you think I would have figured boys out by now.) We will catch a late showing so that the toddler can fall asleep when he gets bored and he will be a hostage in stroller so he will sleep for sure (don’t call CPS – I am a good mother – really). This is the same kid whose favorite word is “MINE” and since he knows how to throw a tantrum – everything is his.
I have been thinking about vlogging so maybe you will see a vlog or two from me if I do not chicken out. I also started this whole new health thing at my house because I am trying to lose weight and get everyone healthy. Needless to say, my husband is not thrilled. My ten year old, however, is on board and the baby, well he is too content with life to care. It occurred to me to this morning that I am back on track too. My moods have improved and I feel happier than I have felt in a long time. It might be an epiphany but I feel good. And the RA and FM, I have good days and I have bad days but hopefully, this new health thing will help to me to have more good days. I will also be blogging less so any rumors of my demise will not be true because I eventually will resurface. I have recently become an NCIS fan and my DVR is loaded with episodes that I often stay up late to watch so that explains the lack of sleep and my blogging absence.
Anyway, until next time…
So many of us are familiar with the vicious cycle that chronic illness presents. Overdoing things on the good days is part of that process and I overdid things. Now, no amount of sleep or rest can help. It is just a matter of waiting the flare up out. I still have a workweek to start and a final paper due in one week for my Family Law course.
The problem with autoimmune diseases like rheumatoid arthritis is that they strike people between ages 20 and 50 who have a lot of living left to do. I have so many responsibilities and people depending on me and RA does not fit into my crazy life. My kids have been bugging me to the park for days and today, I finally gave in and fifteen minutes after we go there, we had to leave because I was in so much pain. Needless to say, my kids were disappointed. The muscle and joint pain always win and not my kids or me.
Yes, this is the frustration of living life with chronic pain and the sad reality is that I don’t get better. In fact, I am lucky if my health does not get worse. Chronic illness definitely brings with it a new reality and we are not the only ones affected. Our loved ones are affected as well. My ten year old has numerous times gotten frustrated with me and asked me why I am not like other mothers. It is not that easy explaining to him that other mothers do not live with chronic illness. There are times where my toddler wants my attention I can’t give it to him and he becomes frustrated as well.
Today was definitely a frustrating day for all and as for me, I ache terribly and it hurts even to lie down. I wonder if remission actually exists. To me, remission from RA is like something to available for a lucky few. The percentage of people who actually go into RA remission is only 30% and I can’t imagine myself being one of those people, considering the craziness that is my life.
Clinical remission is an absence of the clinical signs of inflammation. However, RA patients are not able to discontinue their medications so they must remain taking medications to stay in remission. The American College of Rheumotology has a criteria to determination clinical remission. That criteria is a combination of the following: morning stiffness is less than 15 minutes, no fatigue, no joint pain, no joint tenderness or pain with motion, no soft tissue swelling in joints or tendons, and an erythrocyte sedimentation rate less than or equal to 30 in females and 20 in males. The good news is that the longer the disease stays in remission, the less likely it is to become active again.
I will probably call it an early night and pray that tomorrow will be better. Flare-ups are depressing and I am not good company.
All my life I have been the go-to person for advice, support and a listening ear. Lately, I need all those things because I am not as resilient as I used to be. For as long as I can remember, I have been “tough,” but these days, I spend more time being weak. I know that is allowed considering the chaos that my conditions have brought into my life and I know that it is okay to be weak sometimes or to just simply feel sorry for one’s self. It is okay to feel that way because we are all human and we are all still learning how to bend.
I heard Gary Allen on my radio singing “Still Learning How to Bend” on the drive into work today and I realized that I am still learning how to bend. No amount of experience can make you an expert at living with chronic illness but it can teach you how to bend, swerve, and be flexible when life throws you lemons.
As we all know, chronic illness does not always allow us to be in control. Just like the lyrics of the song, “I’m just trying to understand. It is all in someone else’s hands. There’s always a bigger plan but I don’t need to understand.” Sometimes, I feel like I have been hung out to dry with these diseases and that is not a thing I can do about it. Other times, I find my strength in prayer, thinking about the bigger picture, and by leaning on my love for my children.
It doesn’t mean that I have this all figured out – it means I’m still learning to bend. The irony of all this is that I can’t ever remember myself being this weak and I have been through worse. One thing I have never known is how to be weak. I taught myself to be strong even I didn’t have anything left in me to be strong. That is just yet another lesson when living with chronic illness; you have learn to bend to survive and live a life with chronic illness.
Accepting and living with chronic illness takes time, patience and support because its affects are far-reaching. The disease affects you physically, emotionally, socially and in some instances, financially. The way we are affected depends on the nature of the illness, how affects our bodies, how severe it is and gets, and the kind of treatments we take. Time is really the only route to adjusting and accepting the realities of long-term illness.
Being the patient advocate at Arthritis Connect, I sometimes feel like I have to be the strongest person in the room even though I am sure no one expects me to be. Other times, I give myself credit for trying to be the strongest person in the room. Moreover, there are times where I am the strongest person but not every day or every minute or every second. I tell others that it is okay to feel sorry for yourself on occasion, to mourn what you have lost, or even to cry because it hurts so much to be you. Sometimes, I forget to give myself permission to do that and then, I remember that I am human for trying to hold it all together.
The challenges that chronic illness brings to our lives cannot be challenges if we fight back but at the same time, it is okay to not want to fight back one day and to just want to be left alone. It is okay because we are human and if today, we need to feel sorry for ourselves, we should go ahead and do it. We are entitled it because we are all still learning how to bend.
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What does everything think of my updated header? Rachel over at A Little Bit of Kooky made it for me. She does even classier and fancier designs but me, I am simple so I had her leave it ”simple.” If you would like a header for your blog, Contact Rachel at email@example.com. For only $20, she will create a header that you suit you and your blog.
This is Sally, my Subaru Outback. I purchased her in 2005 when she was only three years old and I had finally had it with unsafe vehicles that were pieces of junk. When I brought Sally, she only had about 25,000 miles on her and she and I have added nearly 90,000 more miles together. She has been good to me, kept my family safe all these years and I love her and I couldn’t imagine my life without her.
About two years ago, however, I started having problems with acceleration and I took her from mechanic to mechanic, and no one could figure out what was wrong with her. They would diagnose her with things that had nothing to do with the problem that I came in for. Everything else was maintenance and wear and tears from tires to brakes to suspension, etc., and she always had all her tune-ups, oil changes, other maintenance, etc. on time. I never took her for granted because she has taken really good care of me.
90,000 miles is a lot of miles for five years and now at nearly eight years old, she is still holding on at close to 118,000 miles. Many of those were trips to NYC when I lived in Southeast PA. I visited my sister nearly twice a month. She took me to Ohio many nights at least three or four times a year when I still resided in PA to visit family. She also pulled a trailer from PA to Ohio – an eight hour drive – when we moved to Ohio nearly three years ago. My husband drove her to/from Cleveland to Columbus once a month for a nearly a year. Yes, Sally has been through a lot, but she kept us safe through many close calls and less than careful drivers. I was rear-ended driving her about three and a half years ago (on my 31st birthday to be exact), and as the dealership promised, she kept me safe and her damage was minimal. She was back to me in three days and I missed her terribly in those three days.
Like me, she has been tough and resilient and even through it took two years and many misdiagnoses to diagnose her, she held on and she is still holding on. She needs a new catalytic converter and it’s quite an expensive job that can range from $1300 to $1600. My husband thinks we should save the money and trade her in for a minivan. I don’t want to trade Sally in because in so many ways, she reminds of me. Tough, practical, careful, and resilient. She has never let me down and when something was wrong, she always found a way of telling me so that I took care of her before the problem escalated.
I had plenty of cars before her but she is my favorite. I believe if I repair her Sally will hang on for another 60,000 miles, but my husband thinks she is an “old” car and old cars are repair bills waiting to happen. If I HAD TO trade Sally in, I would trade her in for another Subaru but we can’t afford another Subaru so trading her would mean I would get stuck with a car that won’t make me feel as safe as she has all these years or as reliable as she has been all these years. The other thing is that up until this point, Sally’s repairs have been wear and tear and maintenance and she is also quite an expensive car to repair. To me, she is as classy as they come. To my husband, she is too expensive for us.
What do you guys think? Should I repair Sally or should I trade her in? I think Sally’s got another 60,000 miles in her. My husband disagrees.
This year’s theme is “Make Fibromyalgia Visible” and the goal of the movement is to bring hope to everyone with FM. Fibromyalgia Awareness Day aims to increase awareness of FM and provide support to those coping with the illness. This is a time to increase awareness of this chronic and life-altering disorder by educating the general public, healthcare professionals, government officials, and legislative bodies.
BECOME an NFA fan on Facebook and keep up-to-date on all our latest news and information. Click here to link to our Facebook page.
PLEDGE TO CARE and encourage others to join the NFA in its national advocacy efforts. The program consists of three pledges: the NFA’s pledge to the FM community, the family’s and friends’ pledge to someone special in their lives who suffers from fibromyalgia, and the healthcare providers’ pledge to the patient. Click here to complete the pledge. Your name is added to our virtual “We Care” pledge wall – a testimony to the far-reaching effects of Fibromyalgia.
SHOW YOU CARE by placing one or more of our “Make Fibromyalgia Visible” products on your car or other prominent location. The NFA has three new products specifically designed for this campaign. Click here to visit the “Aparrel” and “Goodies” department of the NFA Store to see new shirts, hats, totes and mugs.
GATHER WITH FRIENDS IN THE FM COMMUNITY – if you join in an Awareness Day event, be sure to e-mail us some pictures for our Awareness Day collage. Send to firstname.lastname@example.org
A dear friend of mine lost her mother a few months ago. The other day she asked me if she would ever stop missing her. I told her “no, but it gets easier.” For those of you have lost those most close to your heart, you know exactly when I mean. I told my friend that it has been nearly 15 years since my dad died. When he died, he only had one grandchild – my nephew who turned sixteen in March. He missed many graduations, weddings, and the birth of eighteen more grandchildren (we are seven kids), and a whole lot of other wonderful memories.
When he died, I was nineteen, newly married and pregnant with my first child, and I needed him in my life. I didn’t have a good relationship with my mother and I was going through so many events in my life that warranted a father in my life. After his death, I missed him terribly and I felt like I had buried a piece of my soul with him and the years that followed were the most difficult of my life.
The problem was that I grew up in a culture that taught me that a woman needed a man to take care of her and protect her and that she was incapable of doing it for herself. At the time of his death, my brothers were ages 16, 15 and 3 (and they needed me) and the validation I needed at the time wasn’t coming from my mother. In the end, I learned that I didn’t need a man in my life to feel protected, safe, or to take care of me. I needed to learn that I was capable of doing that all on my own and I did, but his death and the years that followed have forever changed me.
I am also certain that if he had not died I may have never learned the lesson his death taught me. Death and loss are difficult but they force us to change the direction of our lives and death is imminent so that means change is as well. Every so often, I think of my dad but instead of mourning and grieving, I treasure his memories and I treasure the person that he made me become. When I had no one to lean on, I leaned on his memories and that alone gave me the validation that I was seeking.
It was James Barrie (the Scottish dramatist & novelist – he wrote “Peter Pan”) that said that “life is a long lesson humility,” and I know with absolute certainty that it is just that. We mourn death and we treasure life, and the rest, what is between, is humility. It isn’t about our chaotic jobs and lives, the debts we will attain and perhaps die with, or even the things that cause us pain; it is the lesson learned and the road travelled.
Do you ever miss the person you used to be prior to your diagnosis? Sometimes, when I look in the mirror, I see someone else and someone I am not sure I recognize. Some days, that makes me sad because I am still mourning the person I once was and on other days, I am content with who I have become.
Chronic illness has an overwhelming effect on a person’s life and the grief that comes as a response to the loss of identity is not unusual. Our lives become interrupted by the disease and we start to see psychological changes that are a normal part of dealing with chronic illness. Because illness is so unpredictable, it forces us to constantly change our plans and we never know how things will work out. We start to lose control of things we once controlled like our personal identities and our independence and with that comes a loss of self esteem.
Many have to change jobs, or leave them all together, and we lose financial security and status. We all have to change our lifestyles in order to adapt to our conditions. Some have to let go of hopes and dreams and we are constantly wondering what we will lose next. Certain roles in our lives start to change such as family, work, and social that involves adjustment not just for us but for others in our lives. Our friends, family members and partners all start to feel uneasy about the unwanted adjustments to their own lives because our illnesses affect their lives as well. What is worse is that if these issues do not work themselves out, we are set for more losses that further add to our loss of self-esteem and loss of identity.
The biggest transition is the loss of identity that we had before we got sick. Here are we changing everything about the way we once defined about ourselves and the way we used to interact with the rest of the world. It can be really difficult to deal with because feeling mentally well means feeling good about yourself. To add injury to insult, we start to lose once supportive relationships that aren’t standing the test of chronic illness.
If you suffer from a condition that is invisible to the rest of the world, you will not always receive validation or support from those you expected to receive it from and you start to feel angry and frustrated. This is a time when you need love, compassion, sympathy and support and what you are met with is skepticism, disbelief and anger. You start to feel angry, hopeless, helpless, resentful, damaged and depressed. Coping is overwhelming and your new identity isn’t as helpful as your old one.
Is there is a simple answer to prevail? No, but prevailing takes time and patience and learning to accept your new identity and how to work with it. Find support with those who understand your struggles. Communicate your feelings to your loved ones about your loss of identity and focus on not feeling angry and resentful simply because they don’t understand. Educate yourself about your condition and take care of yourself the way you would a small child with love, kindness, pampering and nurturing. It is okay to grieve but don’t focus too much on your loss of self worth and instead, focus on who you can become. Make peace with your illness and listen to your body. Last, let go of society’s expectations and the expectations of others you are better without in your life.
Everyday, I find old memories of the person I once was. Sometimes, I miss her but I have moved on. I am not saying that I don’t grieve for that person because loss of identity isn’t something we easily get over. I have, however, learned to accept the person that I am now and the person that I am now has limitations and a breaking point. The person I used to be didn’t have limitations or a breaking point but having unlimited pity parties aren’t going to bring the old me back.
Living with chronic illness isn’t easy but it is a lifelong process that requires us to keep adopting and adjusting every day and with every situation. Illness is unpredictable, intrusive, and interfering and you have to learn to expect the unexpected at any given moment. You will learn that there will be painful periods and periods of improvement and you have to be able to move back and forth from acceptance to adjustment. It is a slow process but we have to learn to let go of the past and accept the people we have become and with time and patience, we eventually master acceptance and adjustment.