Showing posts with label My Life. Show all posts
Showing posts with label My Life. Show all posts

Tuesday, March 3, 2009

Change The Conversation - Stop Using The R-Word

Who says you can't learn anything important from watching TV? Yesterday, while watching an interview with John C. McGinley on the Bonnie Hunt show, I learned about a program started by the Special Olympics. John C. McGinley has a son who has Down Syndrome. He spoke about the February 9th episode of the Bill O'Reilly show on which the word "retard" was used in a callous and derogatory manner. The statement was made by a guest on the show, Dick Morris, who said:

". . .What he [Obama] didn't quite explain to me, and maybe I'm a little retarded about this is. . ."


The result of this is the following video created by delegates of the Global Youth Activation Summit, Please take a moment to watch this important message:




Those of us who suffer from chronic illness know all too well how awful it feels to be judged unfairly or labeled by others. We are called weak or lazy for not being able to do things healthy people can. We are thought of as crazy or hypochondriacs because people don't believe in an illness they can't "see".

We who blog use words everyday to express our thoughts and feelings. Let's all make a pledge to stop the use of the R-word and all other hateful and hurtful language. Please head over to the Special Olympics website and take the pledge, grab the badge and blog about this campaign. This is one of the rare opportunities we get in life to make a difference for the better! Please join me today.

Friday, January 16, 2009

Some of my Writing

I am a writer, I guess all of us bloggers are really. . . and today I wanted to share a piece I had written for my writer's group. The idea was to discuss your most important day, however you interpreted that phrase. Below is what I wrote.

MY MOST IMPORTANT DAY


The morning dawned clear and full of promise. As the alarm rang, I hit the off button ans sprang from my bed ready to face the day and whatever it held. I zipped through all my morning routine, from shower to breakfast and was on the way out the door in a little over an hour. I continued at full pace all day at work, got lots accomplished and stopped to meet friends after work for a drink. When I arrived home after 10 pm, I did a quick load of laundry, finished the breakfast dishes I had left behind and made my "to-do" list for the next day. Before heading to bed around midnight I set out my clothes for the following morning and watched a little of the late night talk shows before drifting off to sleep to repeat the same scenario all over again the following day. I didn't know it at the time, but this day, and many days like it, were my most important days. You see, I'm one of millions of Americans who battles multiple chronic illnesses, most of which are called "invisible illnesses", not because they aren't real, but because their affect isn't always obvious to the untrained eye.

Depending on when and where you meet me, you might not even know I am sick. But sick I am, and there isn't a part of my life that hasn't been changed over the past 12 years. BBI (Before Becoming Ill) I took all the parts of a normal day for granted. All the tasks that we each do, personal hygiene, errands, socializing, work, play, exercise and even sleep were givens, a part of everyone's life. I never had to make a decision between having the energy to shower or the energy to vacuum the rug; there was energy enough for all of it.

My knowledge of our medical system, of drugs, hospitals and doctors was limited to the occasional bout of flu and my annual GYN exam. I took my health for granted, it would always be there, right? I mean after all, I was 30 years old, why would I think otherwise?

Now after years of hard won knowledge, not only of the medical system, but more importantly of my own body, I realize how naive I was then. But in my naivete was also a wonderful care-freeness, the same trait that helped to form that most important day, the day that existed before illness robbed me of pieces of myself bit by bit. The day when I didn't have to make every single choice based on how I am feeling, how I will feel if I do a particular action, eat a particular food, or take a particular medication. The day, not extraordinary, but ordinary to all who are healthy, and envied by all who are not.

Most people, if they are blessed to live long enough, will face the loss of being able to do certain things. After all, our bodies age and we expect that as they do we may have to give up activities or at least tone them down. The marathon runner may become a jogger, the jogger a walker and so on. We even realize that we will have aches and pains and tire more easily, but we never expect it to happen while we are young!

The heinousness of chronic illness is that it is chronic, meaning it NEVER goes away. Some days are better than others and some treatments provide temporary relief of some symptoms, but there is no cure, no getting better for good. And most chronic illnesses progress, even if very slowly, stealing from you like a thief in the night. Each symptom brings its own array of collateral damage. Pain for instance makes sleep difficult, which increases fatigue and decreases mental clarity. It's like a game of dominoes, one symptom tumbling into the next and knocking into the next and so on.

If you are lucky enough to be healthy, you probably get up and begin your day without any thought to how your physical body is doing (like my most important day), not because you are ignorant, but because you can. Your body isn't calling the shots from the moment you open your eyes (assuming you were lucky enough to sleep the night before!). That is/was my ideal day! The days that occurred, without notice, when I went about my business without having to weigh everything I did and determine what would be possible and what wouldn't. To not have to cancel plans made with a friend due to an unexpected flare. To be able to help someone else at a moments notice because I had the energy and ability to do so. To laugh and run and yes, play, with abandon - to love life and those in it to the fullest without compromising or paying for it later.

Since I can't have that day back, I've had to learn to accept life as it now, as it changes each day and to be grateful for all that I can do. Instead of putting my focus on what I have lost, I look at what I have gained. Many people can't imagine what good could come from my illness. At first it was hard for me to see it myself. But, over time, I realized that although I have changed in ways I wished I hadn't, I also changed for the better in other ways. I appreciate the little things now in a way I never did BBI. I am more patient, with myself and others, recognizing as Philo of Alexandria said, "Be kind, for everyone you meet is fighting a great battle". I am not as quick to judge others, especially from appearances, because I know all too well how misleading that can be.

I've learnt a lot about who I am, how strong I am and about who my real friends are. Most people want to be around during the good times in our lives, but who at your side when you are scared, or sick or in pain? Who understands when you have to cancel plans at the last minute yet again? Who is willing to be with you, even when they can't make it better, but knows you need someone to talk to, or cry with, or laugh with? These are the people I treasure beyond telling, because we live in a society that judges us by what job we hold or what financial success we attain, and if judged by those standards, I would be be considered a failure in most eyes. I am on disability and my financial situation is tenuous at best. But there are people who see the value in me, the human being, the funny, kind, smart, caring person trapped inside all the illness. Most importantly, I've learned to see myself that way, to be proud of who I am and to know I have value as person. I can still love, laugh and be a support or inspiration to others, so while I may not always be able to do all I would like in a day, I can take comfort in the knowledge that I've done my best, and when all is said and done, can any of us, healthy or not, ask for more than that?

- - Maureen Hayes 2008 copyrighted



Friday, December 12, 2008

Superior Scribbler Award

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Renee from Renee's Reflections awarded me the Superior Scribbler award. Thanks Renee. I am to pass it on.

Here are the rules for the blog:
  • Each Superior Scribbler must in turn pass The Award on to 5 most-deserving Bloggy Friends.
  • Each Superior Scribbler must link to the author & the name of the blog from whom he/she has received The Award.
  • Each Superior Scribbler must display The Award on his/her blog, and link to This Post, which explains The Award.
  • Each Blogger who wins The Superior Scribbler Award must visit this post and add his/her name to the Mr. Linky List. That way, we'll be able to keep up-to-date on everyone who receives This Prestigious Honor!
  • Each Superior Scribbler must post these rules on his/her blog.
I am passing it on ~ but I am also telling those I send it to to refuse the award if they don't have time or energy to keep it going! Just know I was thinking of you and letting you know how much I enjoy your blogs.

  1. LEMON-AIDE - consistently the best writing, the most uplifting and the most caring blogger I know!
  2. Dottie - an inspiration for her candid thoughts and proof that you are never too old to start blogging or following your dreams.
  3. Rhymes With Migraine - Not only encouraging for those with chronic illnesses, but also showing us how to handle big things (like lay-offs due to the economy) with grace.
  4. My Chronic Life - one of Connie's several blogs. I wouldn't be blogging if it weren't for her support, guidance and help. She has been a true friend all along the way. Each one of her blogs offers something special and different and I encourage you to check them all out.
  5. Notes From One Mom - Terry is a wonderful writer with a vast wealth of life experiences she draws upon to blog about. It is always a treat to visit her blog.
Thanks again Renee for the award. You know I love your blog and so it is a special honor to be nominated by you! To all the great bloggers out there, thanks to each of you for your friendship, your honesty and your writing!

Pictures Of The Seasons Fun

I recently wrote about attending our local tree lighting, complete with horse drawn carriage rides and a visit from Santa, as well as a trip to Westbury House for a tour and concert. The above picture shows one of the beautiful trees at Westbury House, with the mantel decorated for the season.




This is a photo of santa, my mom and I at Westbury house. I have to tell you, I think this is the real Santa, he takes you on a tour of each room and has stories about his elves and which room they sleep in, where they make the toys, etc. . . He is as entertaining for the adults as he is good with the kids.


This is an "after" shot of the tree with Santa and all the local dignitaries. They really did a nice job of putting this event together. After you finished the carriage ride you got a goodie bag filled with stuff from all the local merchants. There was also hot cocoa and cookies to warm you up, and the local tv station had us all taping holiday greetings to air the week of Christmas!

This was a "before" shot of the tree. It was pretty even before it was lit. Not a huge tree, and not overly decorated, it makes a nice statement.

Last but certainly not least, the horse drawn carriage that took us through the neighborhood to look at the lights. The carriage was pretty comfortable and we had enough people on each trip to snuggle up and keep warm. The horses were so beautiful. We donated a toy for a tot to take the carriage ride, which made us feel good and hopefully helped some local kids have a better holiday! Only a few hours after this it snowed for the first time this year. The only thing that could have made it better was if it had snowed during our ride!

Monday, November 10, 2008

Lemonade Award

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I am thankful to Jeanne, of Jeanne's Endo Blog for awarding this blog the Lemonade Award!

This award is given to blogs demonstrating a attitude of gratitude.


Jeanne's Endo Blog is full is full of practical, helpful information-not just on endometriosis, but on a variety of chronic illnesses and other topics. Jeanne is a dedicated, thorough and tireless advocate, whose passion is an inspiration. She consistently writes thought provoking articles that touch many and I am very honored that she has chosen this blog to receive this award!

In keeping with the awards tradition, I will now honor 10 other blogs with the lemonade award, as follows:

1. Getting Closer To Myself

2. My Chronic Life

3. Renee's Reflections

4. Harvesting Hope From Heartache

5. My Life Works Today

6. Notes from One Mom

7. Life in the Autoimmune Lane

8. Rhymes With Migraine

9. Daisy The Curly Cat

10. Rambling & Writings











Thursday, November 6, 2008

Bring on the Kleenex

Okay first I have to admit, I wasn't planning to post today. I am not feeling well and I thought, so I'll skip a day, it'll be alright. It isn't like what I have to say changes the world or anything! Then I was reading posts on BlogBlast For Peace, and since I am a new to the blogosphere I didn't know about this and felt intimidated. Another reason to sit the day out.

Then I got a phone call that changed everything. I haven't posted about this before so I need to give you some background information. I am the youngest of four children. My oldest brother, Bob, who is 51 yrs.old, has always been my "big" brother. He was the one who looked after me when I was younger, who chased the wrong kid down the block and threatened to kill him for slapping me so hard he left a hand print on my back when I was 8 years old. He helped me through our parents divorce, my teen years and first starting out on my own. He didn't always like all my choices, but he had my back and I knew it.

This January, while I was going through the battle of my life health-wise, and mom and I were basically homeless trying to get re-established here in New York with doctors, a place to live, etc. . my big brother suffered a heart attack. His wife, knowing we had a lot going on didn't call right away. They told her he was going to be fine, they put a stent in and he would be home by the weekend, they'd call us then. But he wasn't fine. He developed something called A.R.D.S. (Acute Respiratory Distress Syndrome) and lapsed into a coma before we even knew what had happened.

It would be over five months before he battled his way out of that coma. The doctors and nurses weren't hopeful he'd make it, even less that he recover to any degree if he did. He was on a ventilator, dialysis, feeding tubes and was paralyzed for his own protection. When we visited he had so much equipment hooked up it was hard to find a place you could touch him. He was bloated beyond recognition from the medications and the infections.

My brother is a wonderful husband and father to two boys, one who finished his senior year during all of this, and the other who is in middle school. His wife spent the first 6 months traveling over 2 hours each way everyday no matter the weather to be there with him. She never gave up hope, no matter how heartless or cruel the staff at the hospital or rehabilitation facility were. Mom and I went to visit as often as health would allow, usually every other day. It was grueling and painful.

Finally, about a week after Easter he woke up from the coma. He couldn't speak, eat, move and had no idea what had happened, but he was back. Eventually he was moved to a rehabilitation facility closer to his wife and kids, where he has remained since early June.

This afternoon the phone rang and it turned out to be my brother (we have never been able to speak with him on the phone, he couldn't hold it or dial it!). He will be going home in a few weeks!!! He won't ever be the way he was before all this happened, BUT HE IS GOING HOME!! My big brother will finally get to be with his wife and kids, back in the home they have built for 27 years together, through the good and the bad.

My very good friend, who also happens to be a priest, says there is no such thing as coincidence, that coincidence is merely God choosing to remain in the background. Well, thank you God for using BlogBlast For Peace to bring Bob home! I ask for everyone who reads this to please pray for my brother and for his family, they have a long road ahead of them. They have financial problems beyond telling, physical hurdles and adjustments we can't even know of yet--but Bob is not only alive, he is well and my heart is filled with joy and yes, PEACE!

Monday, November 3, 2008

Is It Just ME?

Something that has come up over and over again during all my time with chronic illness is how to handle scheduling when your life isn't always predictable. I am finding it an issue once again, in the personal realm of things this time.

I try to be upfront with people about my illness. I find it makes it easier to find out right away if they can handle it or not, because frankly I have reached a point in life where I just don't have the time or energy to waste on those who can't understand. I recently moved (as I blogged about earlier this month) and so have come to meet some new people. I am still going through a lot of sickness at the moment, stuff in addition to my regular chronic illnesses. I am seeing an infectious disease doctor, I have CT scan scheduled for Wednesday and a procedure at the GYN this afternoon. On top of all of this, my mother has developed a re-occurrence of C. Diff, which she contracted in the hospital in late Aug./early Sept. We have a lot going on.

I met someone who had asked me to get together and I explained that the day in question was free at the moment, but that between not feeling well, and waiting to hear when tests (like todays GYN visit or the CAT scan) would happen, that might change. I felt I was being clear and honest. Last Thursday when I spoke to the GYN and found out I had to schedule this procedure today, I let my friend know that today wouldn't be a good time for getting together. This person went ahead and got tickets to a hockey game for tonight. I got a phone message yesterday to the effect that he hoped I would be able to make it since my doctor was at 4pm (which isn't the right time, but still. . .) and the game would start around 7pm and we could "catch some dinner before". Now I don't know about you, but I am not particularly fond of having a GYN procedure, hopping off the table and into rush hour traffic to go meet someone whom I don't know well, and then sitting through a hockey game. Another night I would love to do this. Had I not been clear when I told him that I had a doctor appointment scheduled for today I would feel guilty. Instead I feel angry and a bit manipulated.

It's a circumstance I've become too familiar with over the years. People hear what they want to hear, and then make you out to be the bad guy when things don't go as planned. It is disappointing enough to have to bow out of plans you would really like to keep, without the added guilt that goes along with this sort of behavior. I know the tickets weren't cheap. They also probably weren't easy to get on short notice. I just wish that instead of getting them and telling me about it after the fact, I had been consulted.

Do others find that even when they try to be open and honest about their health and the limits it puts on them, others seem to expect more than you can deliver? How do you handle this? I want to make new friends and keep myself open to new experiences, but I don't want to feel like a bad person when my body simply isn't cooperating. Any thoughts?

Saturday, November 1, 2008

Only 3 Days Left Until The Election - Make Your Voice Heard!

I just was reading a post over at Getting Closer To Myself, and Leslie had a great link to a video from The Partnership to Fight Chronic Diseases we all need to see and pass along. I am posting the link here, in the hopes that you will watch it, and pass it along to others.

Chronic illness obviously touches my life, but it touches all of us, sick or not, in the cost of health care. We need to make sure that this is a priority this election. Many of my fellow chronic illness bloggers have written terrific posts on this subject, but the most important thing we can do is VOTE! In order to vote, we must educate ourselves on where each candidate stands on important issues, especially health care.

I previously posted links from The New England Journal of Medicine website which show each candidate's stand on health care. I will list those again here:

Another resource is The Kaiser Family Foundation 2008 Presidential Candidate Health Care Proposals: Side By Side Summary

Voting is a very personal thing, and many factors go into choosing the right candidate for each person. Please take the time now to decide for yourself what your most important issues are, and to do a little research into where each candidate stands on those issues. We are so blessed to live in a country where we can vote our free will and we must not take that freedom lightly. I am not endorsing any candidate, I am just asking all of you to use your minds, hearts and consciences and VOTE!

Tuesday, October 28, 2008

I received The Kreativ Blogger Award Today!!


WOW, imagine my surprise this morning when I opened my e-mail and saw that Connie, from Brainfoggles had made me one of her choices for the Kreativ Blogger Award!! I was so thrilled, touched, happy and surprised. Connie has been such an awesome support to me as I go through learning about blogging. She has freely given to me of her time, talent and knowledge and I wouldn't be able to have done most of things I have on my blog without her. In addition, she has been warm, compassionate and supportive of me as a person as well as a fellow blogger. I am so thankful that she nominated me for this award.

My instructions are to tell 6 things that make me happy and then pass it on to 6 people to make them happy. Isn't that a wonderful idea? So here goes. . .

1. Chocolate - ok, I know it isn't world peace or anything, but it truly makes me happy!!

2. My friends and family, who support and love me for who I am, what a blessing!

3. The ocean - the sight, sound and smell of it instantly relax and renew me. If I can't get there
physically, I will go there in my mind to take a mini-vacation anytime. There is something
so soothing about it to me. I can even look at a photo of waves on the sand and feel myself
relax and unwind.

4. All of the pets I have ever had. I don't currently have any, but each and every one has
enriched my life with their unconditional love and friendship. Animals take you exactly
as you are and love you no matter what.

5. Writing and blogging - I love being able to express myself through the written word. I enjoy
sharing both the real and the fictional and I hope someday to write at least one book.

6. Laughter - my own or anyone else's. Laughter truly is healing. I love the way I feel when I
laugh and I love to see others laugh too. To see that pure joy bubbling forth from someone
is a treasure. When illness or life get me down, laughter is one of the best tools I know for
recovering from any bad situation. To be able to laugh AT myself has been a huge blessing
in my life.

Now here are the 6 people I would like to award:

Kerry, from Lemon-Aide
Kitrona, from Warning: Schematic Inaccurate
Renee, from Renee's Reflections
Jenni, from Harvesting Hope from Heartache
Leslie, from Getting Closer to Myself
Jeanne, from Jeanne's Endo Blog