Saturday, February 28, 2009

Photohunt Saturday - Thankful

These hands are those of the two most important people in my life; my Mother and my best friend. I am beyond thankful for them both. They love me and support me and care for me with their loving hands!

I don't mean to be flip, but I am a true chocoholic. I prefer dark chocolate, but I 'll take it anyway it comes. I am thankful that I am able to enjoy chocolate!

Thursday, February 26, 2009

An Ode To Public Libraries

We are all faced with trying to find ways to cut back on our non-essential spending during these difficult economic times. Since I love to read I have had to be more careful about purchasing books, magazine subscriptions and other media items like DVD's. OF course I am a HUGE fan of the public library, and am blessed to live where we have a terrific selection of items at our library. This is my number one source for all of the above. The nice thing about the library is you can try new authors, new genres and movies you might not have seen otherwise because they are free. If you don't like them, you haven't lost anything. I have discovered some great authors simply by browsing the shelves of the local library. I have also found TV shows that I didn't watch when they were on, that have now been released on DVD, and discovered some real gems that way. I encourage you to make your local library a regular part of your life.

Another wonderful thing I have found at my library are the free programs they offer. They have everything you can imagine - from classes and lectures on every theme imaginable to live music and plays. Most of these are completely free, and if there is a charge it is usually very nominal, a few bucks at most. You can learn how to make jewelry, all about another culture, see a Shakespeare Comedy or listen to Do-Wop music under the stars! If you have little ones, just about every library offers a "story time" for the kiddos - a great way to get them interested in books and reading, even before they are old enough to actually read!

Reference Librarians are another great resource of your membership. They can help answer questions on a variety of subjects and point you in the right direction for finding information on whatever you might be interested in. When I first started blogging, my local reference librarian was able to find many books not only blogging, but also on the social networking sites, like Facebook, MySpace and Twitter. Any books they didn't have at my branch were simply ordered from another branch and sent to me. He even had some ideas for books that I would never have thought of, many of which have helped me a lot.

Lastly, our library system offers free passes to some of the major museums in our area. Because I live just outside NYC, that means I can get into many of the major museums in the country, like The Museum of Natural History, The Museum of Modern Art, and The Metropolitan Museum of Art. With the cost of admission for a family easily reaching over $100, this is a big savings and a cultural goldmine. Check with your local library to see what types of passes they might offer for local cultural attractions nearby.

The best part of all this is the library card, completely free, and in the words of a certain credit card commercial we all know, "PRICELESS" !

Wednesday, February 25, 2009

Pain Blog Carnival Is Up!

February's issue of the Pain-Blog carnival is up at How to Cope With Pain. Please check out all the great entries this month!

Tuesday, February 24, 2009

Wordless Wednesday - Baby It's Cold Outside

Can anyone tell me what kind of tree this is? It is so unique without its foliage and I don't know what it is. Thanks!!

My first "adult" snow angel - it was a blast, just like I remembered it!

All of these shots were taken on a snowy day in my neighborhood.

Monday, February 23, 2009

Life Lessons Part 4

"Being loved is not just about giving, it is also about receiving"
-- Anne Hathaway


In order to love others, you must first love yourself!

  • The picture of the bee and the flower above reminds me of the symbiotic relationship of love. Just as the bee needs the flower for its pollen to make honey, so the flower needs the bee to pollinate and spread the growth of the flower. Each one needs the other and also offers the other something in return for what it takes.
  • We've all heard the example of the parent flying with a child and the oxygen mask. In the case of a sudden loss of cabin pressure the parent is advised to place their air mask on first, before placing one on the child. This is because the parent needs to be alert and able to help the child, and if they aren't receiving oxygen and lose consciousness, neither the child or the parent has much chance to survive. The child depends on the parent to do the right thing in caring for him. It is really the same with ourselves, though I think those of us with chronic illness sometimes have a hard time seeing it that way - we must first take care of ourselves before we will be able to take care of those we love who depend on us. Sounds very much like 'In order to love others, you must first love yourself' and it leads me back to the quote from above, 'Being loved is not just about giving , it is also about receiving'. Why do we find it so easy to give our love, our time and our precious energy, but we find it so hard to accept that same love, time or energy from others? Worse still, why do we think needing help (or love) makes us weak?
  • At the end of the last lesson I asked you to think about the people and things in your life that make you feel good, I called them your lifelines. I talked about the fact that we all need to feel needed and useful. I want you to create a list of people and of things, whether they are actual items, hobbies, activities or interests that make you feel good, needed and useful. After you have created this list I want you to start finding ways to incorporate these people and things into your life every single day. It doesn't have to be the same person or thing each day, it doesn't have to be for a large block of time, but it has to happen each day.
  • One thing I learned about myself is that since I no longer am able to work I was having a hard time feeling needed, I felt I lacked purpose. I started to volunteer at a local Alzheimer's respite program one day a week for about 4 hours. I LOVED it, and it gave me a sense of purpose, made me realize that I could still help others and filled my spirit. It also took me out of myself and my own problems, my pain and fatigue. Eventually, as my health deteriorated I was unable to keep volunteering because I wasn't able to make it on a regular basis. Instead of feeling defeated or useless, I found another way to make a difference. I contacted a charity and asked what type of help I might be able to provide from home. They were in need of someone to collate and stuff mailings for them. While it isn't fulfilling in the same way, I am doing something that helps others and at the same time I am getting myself out of my own head for awhile. This is just an example, it doesn't have to be volunteer work, it can be a hobby - I like scrapbooking and photography. When I feel particularly bad I enjoy taking out a scrapbook of vacations I have taken or friends and family and looking through it. It reminds me that I DO have better days, I have people who love me and I have had experiences that I enjoy. This gives me power over my illness because I refuse to let it define me, even when I am in a flare and unable to do much of anything.
  • Are you starting to make the connection between loving yourself first before you can give love to others? If I don't allow myself these things I get the feeling that I can't do anything anymore, that I am not worth loving. When I make time to allow myself to see how special I am, I realize that I deserve to be loved. Then I am able to ask for help, if I need to, or simply to enjoy a friends company because I know I am worthy. Because I do this on a regular basis I am able to be loving and supportive with my friends and family. I am not running around on empty with nothing left to give to others, because I fill up daily by loving myself first. It isn't about being selfish, it is about realizing that I matter enough to take care of myself. We looked at making a self - care plan in the first lesson, but that dealt with more practical things like laundry, cooking, shopping and house cleaning. This type of plan deals with things that are equally important but tend to get pushed to the back burner.

Saturday, February 21, 2009

Saturday Photo Hunt - Warm #150

What could be warmer than day spent at the beach? All the pictures above are from Fire Island Beach and Sunken Forest this past summer.

I'm a Sexy Superhero!

I went to Daryl's site and had to go create my own alter ego at this site. I always knew I would make a kick ass superhero, I just didn't realize how sexy I would be - Chronic Illness look out, you've met your match at last!

Thursday, February 19, 2009

Life Lessons Part 3

Nobody loves being around someone who complains all the time. That's why this picture of my kitty makes me laugh, she was always willing to make her feelings and needs known. Sometimes she was quite demanding! Does that sound familiar at all?
This doesn't mean you must "suck it up" or deny how you feel. This means taking responsibility for our behavior, and not looking to others to make things better for us. The power is within us, if we learn how to be honest and gentle with ourselves.

"It is the ability to choose which makes us human." - - Madeleine L'Engle

Secret # 3

Be Honest and gentle with yourself!

The quote by Madeleine L'Engle hit home with me. So much about being chronically ill feels out of our control, but we still have choices, so choose wisely :

  • Being honest with yourself isn't always easy. Sometimes it means admitting you can't do things you used to be able to. Other times it means admitting that if you tried harder you probably could do more. That's where the being gentle part comes in. This isn't about beating yourself up, it is about taking an honest appraisal of yourself. What things has illness changed? That's a big question because we tend to focus on the physical changes, but for now I am talking about the emotional ones. Are you less outgoing than you used to be because you don't have the energy to put yourself out there like you once did? If you have kids, do you find yourself feeling guilty for not being able to do all you would like with or for them?
  • Now it gets even harder because you have to answer a question most of us would rather not - what are you avoiding or using the illness as an excuse to hide from? I know this question will rub some people the wrong way, especially because we have so many people blaming us or not believing we are ill when we really are. I am not trying to say that illness hasn't changed you or that it isn't real. I do know that if I am honest with myself though, there are times when it is easier to avoid something unpleasant and blame it on not feeling well, being too tired, etc. . . I don't do this consciously, so it is harder to catch it in the moment than other things. But if I really sit down and look at myself I know that some days, even though I really am tired and hurting, I could also push through a little bit. Maybe I don't because the thing I need to do isn't fun, or it's scary or I don't like the person involved. Whatever the case is, I need to be honest with myself.
  • Once you've identified the real ways in which your life has been impacted by your illness as well as the ways you've perhaps hidden behind your illness to avoid something, you can start to make changes. Just knowing what you can and can't do is empowering. If you really are too tired or in too much pain then there is no reason for a guilt trip! If you are avoiding something, look at why and take steps to address the reasons behind it. I'll give an instance from my own life, I used to put off paying the bills. I'd say I don't feel up to it, and there was some truth in that, but the real reason was, it upset me. There was never enough money and it made me feel upset and scared. Once I realized that was how I really felt, I took steps to address the fear. Now my bills aren't late simply because I am afraid to face my feelings! I don't have more money - I just changed the way I was approaching the task. You can do this too, whatever the circumstance is.
  • Now I want you to start thinking about the people and things in your life who make you feel good. These are your lifelines. We all need to feel needed and useful. We need to laugh and focus on things outside of the pain and fatigue. Start a list of things you love to do, people who always make you feel good to have around and things you feel passionately about. We are going to use this list to start finding ways to care for ourselves emotionally and bolster our health. The great thing is that we are in control of this!

Tuesday, February 17, 2009

A New Website Devoted To Domestic Violence Awareness and Prevention

A new blog called Violence UnSilenced was started by a brave survivor named Maggie. Her first post tells her story, which she can do much better than I. All of us are affected by Domestic Violence, even if we don't realize it. We may not be the one who is the victim, but we know someone who is - a family member, a friend, a co-worker or a neighbor. Please check out Maggie's site, and if you have your own story to share, consider submitting it to help others. If you have a blog, please take the time to read about the pledge and make sure you grab the badge for your own site. Let's help this brave lady make a difference that helps us all!

Life Lessons Part 2

Victory is won not in miles, but in inches. Win a little now, hold your ground, and later, win a little more. Louis L’Amour

There are secrets to living a happy life with chronic illness. They may differ depending on the person and the illness, but the essential parts remain the same. I want to explore some of these secrets that I have learned, the hard way, through my years of living with, and thriving despite having chronic illness:


Prepare and implement a self-care plan!

  • You've read this before, but you never get around to doing it, right? Well that stops now. Even if you are in the middle of a flare, take a piece of paper and start listing the things you need help with. List everything you can think of from cooking, cleaning and laundry to grocery shopping, childcare and doctor's appointments. List errands like returning the books to the library or picking up toothpaste at the pharmacy.
  • Once you have identified where you need help, start to identify who can help. Get creative again! We don't all have family nearby who can or will help, so think outside the box - neighbors, church members, other parents, co-workers, teenagers and good old delivery services all count. I'll bet you can think of many more.
  • Now start looking at both lists and making matches. I use a grocery delivery service called Peapod to get the bulk of my grocery shopping done. I have found a local pharmacy in each town I have lived that delivers. Sometimes they cost more, but a lot of times they are competitive with the big chains, and they deliver when I need my medicine and can't get out. I know my church has a ride program for those needing to get to doctor's appointments, as well as Mass on Sunday. If your church doesn't provide this, call up and ask about it, someone may be willing to step forward.
  • The hardest part of all of this is admitting you need help. Once you get over that fact and ask, you'll find there are lots of people out there who are willing. The thing I hear over and over again from friends and loved ones of those of us with chronic illness is 'I feel so helpless, I don' know what to do!' Let them know how to help and they will be grateful to have something concrete to do.
  • You might not find someone to meet EVERY need, but if you can get help on several of the biggies, that's a huge accomplishment - celebrate it! You may not need help all the time, maybe only when you are flaring, but be honest with yourself and others about what you need, and what they can do, to avoid hard feelings and misunderstandings.
  • This post addresses your physical needs, but we still need to talk about your emotional and spiritual ones, we'll touch on that in the next post - the 3rd "secret". . .

Monday, February 16, 2009

Life Lessons

"Life is a great big canvas, and you should throw all the paint you can on it."
-- Danny Kaye

There are secrets to living a happy life with chronic illness. They may differ depending on the person and the illness, but the essential parts remain the same. I want to explore some of these secrets that I have learned, the hard way, through my years of living with, and thriving despite having chronic illness:


Never forget who you are and never let illness define it!

  • Seize every opportunity you can to have fun and to connect to the parts of yourself that make you who you are. It is easy to get bogged down in the day to day minutiae of the chronic illness grind - the doctors, the medications, the pain and fatigue.
  • Take a play break, make a snow angel, color a picture, sing your favorite song out loud, call a friend and laugh, whatever connects you to the happy you. I don't promise you it will make everything all better, but when done regularly it will help to remind you there is more to you than illness.
  • Sometimes just knowing that helps you to go on, and once you go on, you tap into the real parts of you that have always been there - these are the parts the illness seems to have stripped away.
  • You may have to get creative here, illness can and does have a very real effect on our bodies, but you can find things you CAN do - celebrate your abilities, don't dwell on your disabilities!

Tuesday, February 3, 2009

Wordless Wednesday - Thinking of Spring

Before the rain

After the rain - notice the water droplets on the petals.

Sunday, February 1, 2009

My Sister-In-Law

This post came to my first thing this morning as I opened my eyes, but instead of writing right away, I waited, and I hope it won't suffer as a result of my laziness. Yesterday was my brother's 52nd birthday. Regular followers of my blog will know that we weren't sure he would live to see this day, so it was a joyous occasion. The short version is that last January (2008) my brother suffered a heart attack. He went straight to the hospital and was diagnosed immediately and had a stent put in. He was transferred to another facility where he developed A.R.D.S. (Acute Respiratory Distress Syndrome) and was in a coma and on full life support until the very end of April. After coming out of the coma he required intensive therapy at a rehab center. He was finally released for home just before Thanksgiving this past year. He still needs a walker, braces and has many challenges, but when we think of what could have happened, we realize how blessed we are just to have my brother still around.

This all got me to thinking about my sister in law. She is an intensely private person, preferring to keep it all to herself. She loves deeply and fully, but isn't the demonstrative type. My brother and she have two sons, the oldest of whom was in his senior year of high school when his dad fell ill, and is now in his first year of college. The youngest is in middle school. My sister in law is a teacher. She works as a substitute for teachers on leave, generally in the high school, although sometimes in the middle high level. During the entire 11 plus months this was all going on (not that it STILL isn't mind you!) she was working full time, taking care of the two boys, and driving over 2 hours each way in all kinds of weather to visit my brother every single day (even when he was comatose for 4months straight). Now we may disagree on somethings, but that takes an awful lot of sacrifice, drive, strength and love - I don't think anyone would disagree with that!

We have a weird relationship, she doesn't call often or even give us regular updates on my brother. But I have such respect for her despite that, because she loves my brother completely and she shows it with her actions towards him. I feel nothing short of awe towards her. I think I started thinking about her not only because of my brother's birthday, but because I was already seeing references to Valentines Day everywhere on TV and the web. I am an odd girl when it comes to Valentines Day, I really feel it is a greeting card holiday made up to make people spend money and feel badly about themselves. You want to see true love? Show me the spouse who gets up at 5am, gets the kids ready for school, herself ready for work (educating other people's kids for 8 hours!) and then drives two hours in the snow and ice on the Long Island Expressway to sit beside my brother's comatose body just so she can hold his hand and stroke his hair and whisper how much she loves and needs him. I'll take that any day over a box of chocolates or a dozen roses! And I know my brother, he'd have done the same thing for her. They don't have a dream marriage, in fact, they have had more than their share of problems, health, financial and otherwise - but they are still together and still in love. They embody what the vows mean.

So although we may not be as close as I'd like and we may not speak as often as I wish, this Valentine's Day I know who I will be thinking of. I want to dedicate this Valentine's Day to all the spouses everywhere (I'm talking about you - Annie, Terri, Brian and John!) who take care of their spouses each and every day, not because you HAVE to but because you want to, because you love them. YOU are the real valentine's, the romance stories and the white knights because you show that true love exists, not in the Hallmark way, but in the real world way. You slug it out in the trenches each day and come back for more. Thank you for loving my brother, my friends, your spouses and for showing me what is truly possible.