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Monthly Archives: September 2010

When Mommy or Daddy Gets Sick


Dr. Gary McClain is the man behind JustGotDiagnosed.com, a website for those who have been diagnosed with chronic and catastrophic medical conditions, their caregivers and loved ones. He has recently started a role with Arthritis Connect and Alliance Health where he will be working with those struggling with the many questions and complexities of chronic illness.

In a recent post, I blogged about Parenting and Chronic Pain. After that post, I came across an article by Dr. Gary about Chronic Illness and Parenting that I would like to share.

When Mommy or Daddy Gets Sick
Gary R. McClain, PhD
“Mommy doesn’t feel good.”
Hearing these words can have a profound impact on a child. Whether the parent’s illness is chronic or catastrophic, or even a temporary condition like a cold or the flu, children may feel as if their well-being is at risk. Household routines change. The ill parent may look or behave differently. Treatment may include the involvement of unfamiliar faces, like healthcare professionals, or hospitalization. All of this can leave children feeling confused and scared, even if they appear to be taking it all in stride.

Here are some ways to help children cope with the illness of a parent:
Give age-appropriate information coupled with lots of reassurance. When children don’t have any information to go on, they make up their own stories. These stories aren’t grounded in reality, and can greatly increase their fears about the future, and can even leave them wondering if they are somehow responsible for their parent’s illness. Stay optimistic when talking to your child – beginning with reassurance that the doctor is working hard to help you feel better. Talk with a therapist or other child specialist if you aren’t sure what your child is ready to hear and when your child is ready to hear it. 

Encourage your child to express his/her feelings. Just because children don’t appear to be worried, doesn’t mean that they aren’t. Children learn to stay positive out of fear that they will cause their parents additional worry. They may also interpret your own insistence in maintaining a positive attitude as a signal that they aren’t supposed to express their own feelings. Start the conversation by simply asking your child is feeling, along with reassurance that you want to hear whatever it is they want to tell you, even the ‘scary stuff.’ Give a few extra hugs and reassuring words.
Maintain family routines. Day-to-day routines provide children with a sense of comfort and safety, so even the most simple shifts in what’s normal at your house can leave them feeling scared or confused. When you aren’t feeling well, or are preoccupied with your own concerns, you may have days when you are tempted to overlook the details, like making sure you are stocked up on their favorite breakfast cereal, or sitting with them to watch Saturday morning cartoons together. Stay on top of the little details of daily life, and get some help here if you can’t.

Don’t be afraid to ask for help. Make a list of everything that has to get done and then do some cherry-picking in terms of what you want to handle yourself and where you will need someone else to jump in. Relatives and neighbors can be enlisted to give you a hand with housework, grocery shopping, or providing transportation to extra-curricular activities. If you are partnered, or have teens, they may be able to help out with the younger children. Save your best energy for the tasks that bring the most quality of life for you and your children – having lunch together, going to the park, doing homework together. This may also be a good time to invite the grandparents for a visit if they can give you some temporary back-up.

Accept help from your child. It is human nature to feel helpless when a loved one is not feeling well, and when we feel helpless, we want to do anything possible to feel like we are doing something – anything – to make things better. Give your child the opportunity to do you a favor, something as simple as helping you make dinner or perform other household chores. Better yet, find projects that you can work on together.

Don’t neglect your own well-being. Remember that you can’t take care of others if you aren’t also taking care of yourself. Listen to your doctor’s recommendations, and listen to your own body. Make sure you are following your treatment plan and getting adequate rest. If you find that you aren’t able to get the rest that you need, review that list or priorities and see where you need some additional assistance. Don’t try to be Super Mom or Super Dad (even if that means the house isn’t quite as spotless as usual, or if the dishes stay in the sink a little longer). 
Find a safe place to express your own feelings. What’s going on with you emotionally? Children are very perceptive, and they can sense when their parents are worried or scared or otherwise trying to keep their feelings bottled up. Feelings don’t go away by themselves. Talk with someone you trust – a friend, family member, a member of the clergy, or a therapist. If you’re clear on how you’re feeling about your illness, you’ll be better able to help your children with their own emotions.
While stressful, illness can also provide an opportunity for growth. Children can learn to be more independent, and you can develop a deeper relationship with your children that includes sharing of emotions and joint problem-solving.

For more information on Dr. Gary, visit his website JustGotDiagnosed.com or at Arthritis Connect.
 
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Posted by on September 30, 2010 in Chronic illnesses, Motherhood, parenting

 

The Greatest Man I Ever Knew


Two important dates came and went in my life recently and they passed me by without a thought. What this tells me is that I am finally letting go of someone that I held onto for nearly fifteen years. August 31 was the 15th anniversary of my father’s death, and September 15 would have been his 68th birthday. Both of these dates passed me by and at first, I felt guilty for not remembering their significance and for not visiting my father’s grave as I do every year on those dates, but I suddenly realized that the impact that both of those dates have had on my life isn’t what it used to be.

I am not saying that I don’t miss my father but I think I have finally stopped grieving. I also think I have evolved, grown and changed in so many ways in the last fifteen years that his memory no longer hurts. Instead, it makes me proud. The person that I am today – content, confident and strong – is the person that he always wanted me to be. Granted, it took me nearly 35 years to get to that point in my life but this year as my 35th birthday nears (in 3 months), I no longer want to look at past, I want to look at the present and towards the future. I remember a time when I feared growing older, and now, I welcome it with every part of me. I love the person I have become despite the impact that illness has had on my life. I also love the spirit of the person that I am now and maybe my health had something to do with that and maybe it didn’t.

Fifteen years ago when my father passed away, I was nineteen years old standing by my mother’s side helping her to make the hardest decision that any nineteen year old should have to. After 43 days in a hospital on a ventilator, the time came to say goodbye and that decision was one my mother could not make alone. For 43 days, she stood by his side waiting for him to wake up despite being told the chances were slim, and I watched her lose parts of her soul and spirit as each day went on. I saw a man that for nineteen years of my life hung the moon change into someone I did not recognize, and I knew that his time with us was running out, but my mother refused to believe it. I knew that a man who stood confident everyday of his life until 43 days prior would not want to be in the condition he was in and watch his family mourn while not being able to move on. He was no longer a part of our lives because he was in a vegetative state and he was never going to come out of it.

At 53 years old, he was going to miss out on a whole lot including college graduations, weddings, and grandchildren, and nothing would change that. My father was gone and my mother wanted to believe in miracles. While I wanted her to hold on to hope, I could not stand to see her suffering. We finally said goodbye to my father in the evening hours of August 31 and despite knowing for 43 days that this moment would eventually come, it was the hardest thing that anyone of us had to do. My mother became distant from her children, including my baby brother who was only four at the time, my two other brothers, ages 15 and 16 began rebelling, and my sisters and I tried to focus on our own lives while caring for our four year old brother.

I found myself trying to make sense of a life without my father and I felt like that I was weak without him. I had no one to lean on and my marriage and my health were both failing. I needed my father in my life, I felt like I had buried a part of me with him and the next few years of my life after his death were the most difficult of my life. So much was happening and I need a father to feel safe and protected but I didn’t have that so I learned to fend for myself. I also learned that I was capable and his death and the years following forever changed me. I mourned for many years and I never stopped missing him. In my dreams, he offered me so much hope. He came to me when I needed him most so in a way he never really died in my heart and in my soul. As I became more content, more confident and stronger, I started seeing less and less of him in my dreams. I also started to miss him less and less. Then, one day I realized I didn’t miss him at all because I was too busy doing what I knew would make him proud.

As I write these words today, despite the rain and how gloomy it is outside, I feel the sun shining. I can feel him beaming ear to ear because he is proud and while I wish that I could have become the person today with him in my life, I didn’t have that option. I did learn a lot while he was alive, but I learned more from his death. To come to this point means that I finally stopped grieving and I have started living the life that I know that he would want me to live – healthy or not necessarily healthy. His death, my life after his death, and even my diagnoses have all made me this person, and I don’t know what I would be without all of these life lessons. I certainly would not be as content, as confident and as strong as I am now.

 
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Posted by on September 28, 2010 in Life is too short

 

Parenting and Chronic Pain


When I check the searches to my site, this one stands out: How Can I be a Good Mother When I Suffer from Chronic Pain? This is a question that I ask myself almost daily but I realize that I am not alone here. There are thousands and even millions of young mothers trying to make sense of motherhood and chronic pain and while they shouldn’t really go together, they often do. I used to believe that we were a minority group but it turns out that there are millions who parents out there who live with the reality of chronic pain on a daily basis.

 

Parenting is hard but parenting with you live with chronic pain is really hard. Parenting means you draw attention from yourself and give it to your children because they need you. That is really hard when you are in pain daily but the sad reality is that you are not the only one suffering from the affects of your pain. Children whose parents suffer from chronic pain have many questions and are often insecure about the future. The best thing a parent can do is be open with children about pain and while this is difficult, it is a necessity to make your child feel at ease. 

 

I am a mother to a toddler and a preteen. My toddler understands that mommy hurts and I find that on the days that I am most stressed out with pain, he knows because he starts to act out. For example, the other night, I had an ice pack under neck because I was having excruciating pain in my neck and shoulder muscles. The pain was so bad that I was near tears. My toddler looked at me with the saddest eyes, laid down next to me and wanted to be held. I did not know how to respond but I knew he understood and one of the things I have learned is that I can’t hide my pain from my kids. I hugged my toddler, told him that mommy’s ouchie would go away soon and that I would play when him when the ouchie was gone. 

 

My ten year old has questions about how the future and whether things will get worse for me. I tell him that I am doing everything I can so that I do not get worse. He worries about our schedules and routines and often asks what he can do to help. He wants to know who will take care of his brother and him and wants to know that someone will. For me, my honesty holds more clout than my telling him that “I don’t know” or that “I will be better tomorrow” when he knows that may not be true. 

 

I don’t know what my response will be when they get older and if my condition worsens. I just know that life for them isn’t easy because I am not healthy. I also know that they understand empathy and a lot of their peers don’t and never will. I know that they know honesty and openness and they know how to be caring and sensitive. The best a parent can do is share their good days with their children because those are days that help them get through when bad pain days come. It is also important that parents stay on top of their children’s moods and behaviors because children are equally affected when a parent suffers from chronic pain. 

 

I have dealt with chronic pain for a number of years now and I know how challenging it makes parenting. I often find myself irritable and crabby and it does not make me a pleasant person. That is why I have learned the importance of being honest with my children and not making promises that I cannot keep. Hiding my pain is not good for any of us. I also see my ten year old trying to turn into my caregiver and that is where I have to draw the line and I think that is where every parent has to draw the line. As parents, we need to be the responsible parties for our health and for our children’s security. That means we have to continue to be parents with chronic pain who pay particular attention to how our children are affected.

 
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Posted by on September 21, 2010 in Chronic Pain, Motherhood, Questions

 

Overwhelmed, Overworked, and Underpaid


I finally had an opportunity to catch up on reading blogs I had not read in weeks.   The last few weeks have been really busy with twists and turns in every direction.  I am currently trying to find a buyer for that property that has given me a stress induced headache everyday for the past three years.  I am refusing to rent it out and insisting it gets sold with my husband disagreeing.  Imagine your kids begging you for a pet and promising to take care of it. It works out fine at first but after some time passes, you are up at 5 a.m. every morning walking the dog.  It is kind of like that so either my husband takes care of his pet or it is getting sold to the highest bidder.
In other news, my toddler’s birthday was Sunday and he turned two.  I took him on a scenic train ride on Saturday as an early birthday present and he has not stopped talking about the train ride.  It is really nice when they are little and it does not take much to impress them.  Wait until they are say, ten years old, and are demanding they get their way, then they stop being cute.   Yes, welcome to my world.
This first photo is the train pulling in.
This photo is of the original train station in Peninsula, Ohio.
My kids walking towards a lonely caboose. 
So my kids had a great time and my toddler loved his birthday surprise.  You know – little boys and their toys.  I think men and their toys are even worse.
Right now, I am fighting the remnants of a flu, this after dealing with a week of joint pain. (Anyone own an island in the middle of nowhere I can stay at for a few weeks?) You want to know what is impressive. I dragged myself into work everyday for the last two weeks with really bad joint pain and now the flu – okay, well it is not that impressive.  I think my coworkers wish I just stayed home.  Truly, I would rather be in bed sleeping but I know that that is not an option.  Besides, my reward for being such a hard worker was more work.   Not a raise or a bonus or a promotion, but more work.  I got a third person to work for and another person to treat me like a messenger, message taker, time creator/maker, deadline locater, stand over my shoulder, etc. – what a job!
I saw my rheumatologist on Monday and she changed my fibromyalgia medication to once per day instead of two.  Watch the damn fibro pain return.  Those of who suffer from chronic conditions know when things are too good to be true, but my goal is to be medication free from the fibromyalgia as scary as it may sound.   I also plan on reducing my medication for RA, but that is something that is a long ways down the road. It is like my plan to go to law school.  It may happen or may not.  That all depends on the twists and turns that life throws at me.
Well right now, it is back to old grind.  Hopefully, I do not nod off on my desk.  With a stuffy nose, I will be snoring
 
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Posted by on September 15, 2010 in Motherhood

 

Book Review: A Delicate Balance: Living Successfully With Chronic Illness


“Living successfully with chronic illness takes patience, humor, knowledge, support and time.” I could have written those words but they are not my words. These words are written by Susan Milstey Wells who is a chronic illness sufferer as am I and as are the readers of my blog. We are special group of people united by the crippling effects our diseases and the ability to learn strength and endurance in the most unique way possible. In her book, A Delicate Balance: Living Successfully With Chronic Illness, Susan writes, “Chronic illness doesn’t come with an instruction manual,” and as we all know, it is something we learn over time. Susan’s book is not a self-help manual nor is a book how to live with chronic illness. It is about the experiences of people just like you and me trying to finding answers and a balance between a normal life and a life with chronic illness.
When a person is diagnosed, he or she begins a new and long journey towards finding a balance between acceptance, understanding and healing, as Wells tells us her book. Wells takes the book in the same direction of her own journey and the same direction that many of us have traveled in order to make sense of our new lives with chronic illness. The first three chapters of Susan’s book deal with the psychological and emotional aspects of getting a diagnosis and then figuring out what the next steps are once you have received a diagnosis. In the middle part of the book, she goes into detail on looking into treatment options, finding medical providers to help us through the maze of questions and confusion, and the effect that chronic illness and the all the aspects of treatment and education have on the personal relationships in our lives. In the last chapter of the book, Susan offers an optimistic view to her reader on looking at chronic illness as an unwanted gift, but nevertheless, a gift that teaches us the kind of people we are capable of being through the lessons that life throws at us.
Chronic illness is never smooth sailing and from my own experience, I have learned, like anything else, it comes down to what you make of it. Susan takes the topic in a positive light that teaches how to find that balance and how to make it work for us. The unique thing is that her advice isn’t expert, it comes personal experience, hers and many others who contributed their time to speak about the effect that chronic illness has on their lives. It is a powerful message that you can use not just for living with chronic illness but also for living with other challenges. That message does not come from Susan alone. It comes from people like Ken Henderson, who is a married father of two with fibromyalgia who had a difficult time getting a diagnosis, and in the process lost a healthy gallbladder, was sent to a psychiatric hospital, lost his job for taking too much time off work, and had to cash out his retirement savings. If he knew what he knows now, he would have spent more time trying to be healthy, rather than finding a diagnosis. Or Ellen, a 49 year single woman with interstitial cystitis and lupus who while searching for her diagnosis agreed to have a hysterectomy even though she had no children. Her health forced her to retire from teaching after 28 years. Today, she runs a local interstitial cystitis support group and writes education plays for children. It is also about Sally who has chronic fatigue syndrome, age 31, married and unable to have children because she feels like she is not well enough. She started having symptoms as a teenager but only received her diagnosis at age 23. She has a doctorate in clinical psychology but because of her illness, she is unable to work. There are many more Kens, Ellens and Sallys out there living with chronic illness and struggling everyday to be stronger and to find a unique balance between normal and living with chronic illness.
One of my favorite quotes from Susan’s book is “for those of us who are ill, chronic illness sets us apart. But when we read about the experiences of others, we realize we are not alone and that healing is available to all of us, regardless of our disease.” (You can find this quote right at the beginning of her book at page 3.) This is the first message that Susan delivers and sets the tone for the entire book – you are not alone because there are so many people are there just like you. I find this to be similar to being part of private sorority or fraternity; you are a member for life and no one understands you like your sorority sisters or frat brothers. The age of the internet, blogging, and online support groups has allowed us an opportunity that other chronic illness sufferers before us did not have. We have the ability to reach out and feel less alone and that is so very important for sufferers to understand that they “are not alone and that healing is available.”
One of my favorite chapters was titled “From Denial to Acceptance and Back Again,” because it illustrates how healing actually works. We grieve, then move on, and then we go back to grieving. This is just part of being chronically ill and to know that others can relate to you makes all the difference in the world. This is also a good thing because it teaches how handle challenges in living with chronic illnesses. We learn to accommodate our diseases in order to live our lives and to find that “delicate balance” that Susan’s book is all about.
When I found most interesting about Susan’s book is how relatable it is. The questions that I ask and blog about and that you question and blog about were right here in Susan’s book from chronic illness being lonely to it being a family affair to whether you can continue to work or how you fear asking a for an accommodation. In a way, it is a resource manual for living but what is unique is that it comes of those who have experienced a life with chronic illness and their experiences are examples of how we can find balance in our own lives.
You can purchase A Delicate Balance: Living Successfully With Chronic Illness through Amazon.
For more information on Susan, visit her website.
 
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If you have a book about chronic illness, rheumatoid arthritis or fibromyalgia or a product you would like me to review, please email me at lanab2005@msn.com.
 
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Posted by on September 14, 2010 in Book Review

 

Weakness vs. Strength


Dictionary.com defines “weakness” as a “state or quality of being weak; lack of strength, firmness or vigor, or the like; feebleness.” It also refers to weakness as “inadequate or defective,” in terms of “a person’s character.” The definition of “strength,” by contrast, can be defined in nearly fifteen different ways, as presented by Dictionary.com. It is the “the quality or state of being strong.” It also has to do with “mental power, force or vigor” and “moral power, firmness or courage.” There are many other definitions but my favorite comes from Collins English Dictionary, which defines strength as “the ability to withstand or exert great force, stress, or pressure.”

All of us, at some point in our lives, see ourselves as weak and other times, as strong. Living with two chronic pain conditions means my strength is tested on a daily basis. I am not always strong and I have been known to be weak to the point of tears. Those who struggle with the disease have learned what strength is and we have also showed others what it means to be strong. Because we show our strength to the rest of the world, and hide our weakness, we are often underestimated when we show weaknesses. It is kind of like a paradox (a situation that contradicts itself).

On my worst and most painful days, I cannot hide how much I am hurting. I do not necessarily say it or how much I am hurting but it is reflected in my mood, my conversations, my ability to get up in the morning and to work on time, and my work product. I want to tell my employers that I need to be accommodated but I fear the outcome of such a decision. I don’t want to them to see me as incapable, because once I ask for an accommodation, then I will be seen as weak. This morning, as I made in late barely able to move, I contemplated whether it was time to ask for an accommodation or just simply a little understanding. Often times, I wonder whether asking makes me better than those hundreds of people who have other chronic conditions such as diabetes or high blood pressure. Do I deserve an accommodation and they don’t? The fact that I fully understand that I am not better than anyone else keeps me from admitting that I am weak.

My kids think I am strong and that I am capable of everything from hanging the moon to curing a boo-boo or a tummy ache. My ten year old often tells me he wants to be strong just like me when he grows up. To him, I am strong even I feel weak because I won’t show my children my weaknesses.  Nevertheless, it is not easy to feel strong when you feel like the disease is winning. Within the last few weeks, I went from having few symptoms to have this disease hitting full force. The swelling that I did not miss from a year ago has returned and along with it has come the sadness and the feelings of being weak.

I know the changes in the weather play a part but last year at this time, I was in a dark place and I do not want to go back there. My kids need me to be strong even I am so weak that I am down on my knees. I guess I can take it as an opportunity to pray for guidance and strength. I know that I am only human and to be human is to show weakness. None of us possess the ability to be strong all the time. As for me, I have to learn to come to terms with the reality of this disease because fighting with it means that I do not always win. I have learned, if anything that my conditions taught me to be strong and I have learned the hard way how to prioritize and what is most important in my life. Admitting that I am not always strong and that I can be weak means that I am ready to come to amicable terms with RA and to live with it and not against it. Feel free to wish me luck (wink-wink).

 
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Posted by on September 7, 2010 in Chronic illnesses, rheumatoid arthritis

 

The RA Communication Kit


I recently received a “Let’s Talk RA” communication kit from the Arthritis Foundation. First, I would like to point out the importance of communication with your doctor towards managing your rheumatoid arthritis. Let’s Talk RA offers an opportunity to the take the first step in learning to discuss your healthcare options with your doctor. The kit is free and it provides a lot of great important information essential for successful management of RA.

The communication kit offers four great resources: (1) a communication guide that offers advice on how to make the most of your appointment with your doctor; (2) a healthcare assessment so that you can share your responses with your doctor at your next appointment; (3) a survey that allows the Arthritis Foundation an opportunity to see the helpfulness of this kit and so that they work towards other successful resources to help patients in RA management; and (4) information from the Arthritis Foundation and Bristol Myers Squibb about other resources and information they provide.

Personally, I think that this a great tool essentially for those who have a hard time communicating with their doctors on they are feeling and the concerns they may have about their treatment and healthcare. My favorite piece of this kit was the patient notebook, because it allows you a small, handy place to all your questions and your doctor’s responses to those so that you can look at that in preparation for your next appointment. These is so much information out there and it really helps and makes sense to have to break all that information down and to just look at the most vital information that you need to better manage your care.

http://www.youtube.com/v/XKEBIV1rGaw?fs=1&hl=en_US

 
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Posted by on September 5, 2010 in Product Review, rheumatoid arthritis

 
 
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