Saturday, September 27, 2008

Illness And Moving And Caregiving. . .OH MY!!!

Hopefully someone else out there has the same silly sense of humor and gets the post title reference to "lions and tigers and bears, OH MY!!  I'm a little punchy with all that has been going on around here lately.

For starters, my mom has been ill for awhile.  The 2 weeks before I started this blog, she was hospitalized for 10 days.  Since I am the only caregiver for her,  it was a very stressful time for us both.  She is home now, but has developed another infection requiring us to make multiple doctors visits.  The antibiotic which she needs for her infection increases the chances of her C-Diff returning, so we have our fingers crossed that we don't begin that battle all over again!

In the midst of all this we are moving in 3 days!  I know, why make something simple when you can complicate it, right?!!  Seriously, this move will be a good thing for us if we live through it!  We have been in a very bad living situation for almost a year now, and it has affected our health and emotional well being, so once the stress of the actual move is over, it will be a definite benefit in our lives.  The problem  of course is, how to get to the better place without killing ourselves in the process.  Well, I must confess I am doing something I have NEVER done before, and I've moved a lot of times -- I've not only hired movers to move us, but to pack us as well and to help with unpacking.  True, money is very tight, and it certainly wasn't the cheapest option, but given the circumstances I realized that my responsibility is to my mother and to myself to give us the best chance of remaining as healthy as possible through all of this.  For me the answer was I needed help.  Unfortunately we don't have friends and family nearby who would be available to call on, so I did the next logical thing, I called on professionals.  I know I had a hard time accepting that I needed the help, and justifying the expense when we are so strapped, but when I realized what it would cost me physically to try to do everything on my own, I realized I was being proud and selfish.  That wasn't easy for me to admit.  It is still hard to admit I cannot do everything all the time, and this is after 30 years of living with chronic illness and having to learn to lose pieces of myself that I valued and defined myself by for so long.  But the reason I am writing this personal stuff in a public post, is that I know it is something that all of us, whether we are the sick person or the caregiver, go through.  I want to let you know that you aren't alone in feeling frustrated that you can't do all the things you would like to, or that you used to be able to.  But, that said, I also want you to know that you are learning new skills all the time and growing as a result. 

Learning to admit I need help, and especially learning to accept help when it was offered has been a huge blessing in my life, though I went into it kicking and screaming in the beginning.  Now I realize that it doesn't make me a failure to reach out when I need to, and it helps those around me to to do things that are really needed and meaningful, and that makes them feel good and needed.  Also, it has taught me that I don't have to do everything to be a good person (that terrible disease of perfectionism that lingered with me for so long!), that I am a good person just as I am.

Now the week wouldn't be complete if I didn't get ill as well!  Unfortunately I am pretty sick at the moment too.  But instead of pushing myself to keep going until I drop (like the old perfectionist would have!), I am taking care of myself and doing small things to make the move go more smoothly on both ends.  Instead of moving tons of things over before the move day by myself, I took some time to think about what we really need right away.  The first thing that popped into my mind was the bathroom -- LOL!!  So, I made sure I had a shower curtain and liner up, some toilet paper out, towels, hand soap and essentials like toothbrushes, toothpaste and the like.  This way we can just take out time getting the non-essential stuff set up as we both feel up to it.  In the meantime, we can shower and do all of the daily functions without trying to open a million boxes to find things.  All of this took less than hour between grabbing what we would need from the old place and setting it up in the new place.  But the peace I feel at knowing it is done is worth the effort.  And I still had time to nap, take medicine and care for mom!

Are there still things that need to be done, OH YES, but instead of panicking I am addressing each item and deciding what is really important and what I can realistically handle given how I am feeling and what mom is needing in terms of care.  It is a delicate balance.  I know that I will be freaked out when the movers pack us.  I am sure there will be things I forget, but I also know that I have truly tried to do what is best not only for myself, but for my mother, and in the end that's what really matters.  Everything else will get done in God's time, which is always the right time anyway!

So, if you have any good tips for moving without drama, or caring for another while you are feeling ill yourself, please feel free to share them with me.  I don't know it all and am always open to learning from others walking this path too.  And if you are still struggling with asking for, or accepting help, try to remember that you can be a blessing to another just by needing that help.  You aren't weak or bad, you are simply in need at the moment.  Of course it is important to pass that help along when you are feeling better, remember we all need to "pay it forward"!

Please be patient with me during the next few days.  I will be without internet service for 2 days next week, but as soon as I am back on-line I will be posting again and letting you know how it all went.  Before I sign off today I want to thank Lisa Copen of Rest Ministries for including one of my posts on Being a Good Friend Even When We Don't Feel Well as a Guest Blogger in the Invisible Illness Week Blog.  If it hadn't been for Lisa, and IIAW, this blog wouldn't exist.   I know how much the whole week meant to me personally and to many of you as well.  Thanks to everyone involved for helping so many of us in so many ways!

Monday, September 22, 2008

Goodbye Summer, Hello Fall

With today being the official last day of summer, and the first day of fall I thought I would list some of my favorite things about the season just passed, as well as some of the things I look forward to every fall.  I hope you will add to my list with your own favorites in the comments section!

Some of the reasons I love Summer
  • The long days when it feels like it stays light forever
  • The ocean -- I never tire of listening to and watching the surf roll in and out
  • Not having to wear socks, heck even being able to go barefoot
  • The smell of a campfire, especially when roasting marshmellows for s'mores
  • The sound of birds singing in the trees each morning
  • The beautiful weather, which allows me to take long walks out in nature

Some of the things I look forward to in Fall
  • The cool, crisp autumn air that never causes my hair to frizz
  • The sight of children decked out in their Halloween costumes as they go trick or treating
  • The taste of warm apple cider
  • The gorgeous show the trees put on before they shed their leaves
  • The feeling of a new beginning I get each Fall

I have many more favorite parts of each season, but I am interested in what you have to say.  I feel blessed to live in a region where I experience all four seasons, I haven't always, but I know that no matter where you live, the change of season evokes some powerful feelings for us all.  Share yours with me!

Sunday, September 21, 2008

Flare Care

As all of us with chronic illnesses know, some days are better than others health wise.  I am in the middle of a particularly painful flare right now.  Fortunately I have learned over the years to expect these times, and I have certain self care strategies in place to make things more bearable.  If you have lived with any illnesses for a long period of time, you probably know what I am referring to.  If you are new to the world of chronic illness and it's rapidly changing ways, then now is the time to start making your own list of "survival" strategies.  They can range from the very practical to the very whimsical. 

The type of flare I happen to be experiencing right now is made much worse by things like eating, moving or even talking too much.  Because I know this about myself, I have learned to always keep certain foods that I can usually tolerate small amounts of, around the house.  Since staying hydrated means staying out of the hospital (my own personal number 1 goal!), I also keep things like gatorade, individual cans of caffeine-free Coke to flatten (settles my tummy better than most medications without the side effects), bottled or Brita water and an assortment of teas on hand to keep me sipping on beverages throughout the day.  I eat only when I must to take a medicine, knowing that as the pain abates, my appetite will return, and that I will not die from two days or so of improper nutrition.  I have certain pillows that I use to help maintain my position in bed, since I have to sleep sitting up when this happens.  I allow myself the luxury of just washing with a washcloth to avoid the movement and water of the shower, which really increases the pain.

On the less physical and more nurturing side of things, I find it hard to read much due to the pain and the medications I am taking, so instead of whatever book I might be absorbed in at the moment, I always have on hand some good magazine options, some puzzle books and even the occasional catalog.  It gives me something to flip through that doesn't require a lot of focus or thought, but takes my mind off of things for a few moments at a time.  I also keep a supply of funny DVD's, especially TV shows that I really enjoy (Friends, Mad About You, Gilmore Girls, Gidget, That Girl) anything that isn't too heavy and that makes me smile usually helps the pain as well.  I don't answer the phone unless it is necessary.  I use my caller ID to screen calls and let my voice mail pick up most of them.  That way I don't have to expend energy or cause pain trying to explain that talking makes things worse.

Most importantly, I listen to my body.  If anything seems different or strange from my usual "attack", then I contact the doctor.  After many years of going through this I am very good at gauging what will pass and what needs immediate attention.  My advice to anyone is "when in doubt, contact the doctor".  Much better to be safe than sorry that you mistook something more serious or needing immediate attention for just another flare or a new symptom of whatever your own illness is.

Lastly I practice meditation, biofeedback and use visualization.  All of these things can be learned and are helpful in controlling pain, as well as breaking the cycle of fear/anger/resentment that this is happening again.  I use them on a regular basis to help maintain my health, and as another tool when I am in the middle of a flare.  I can't say they make it "all better", but they make it more bearable.  By relaxing my body and my mind, it allows both to have the energy it needs to help me to heal.  Along the same lines, because I am a religious person, I pray.  I find that for me, knowing that God is there makes everything feel less overwhelming and brings me great comfort.

I would love to hear from all of you the types of "flare care" you employ for yourself.  As a group I have never met more creative or resourceful people than those who live with chronic illness.  I am sure we can learn a lot from one another that would be useful to our own situations.

Friday, September 19, 2008

Musings on Tree Houses

As a child I was fascinated with tree houses.  Since I never had one, I think the love affair began with my favorite childhood book, "Little Miss Suzy", the premise of which was a squirrel who lived in the top of an old oak tree.  The image of falling asleep each night looking at the stars, with the wind gently rocking her to sleep, enchanted me.  Oh I climbed trees as a kid and spent a fair amount of time sitting in them, watching the world go by from my secret perch, but I never had an actual, honest-to-goodness tree house.

Recently I have become infatuated with the idea again.  This past winter I moved into a new apartment.  It's located on a rather busy street, not exactly the view one would choose.  But I noticed that from my fourth floor perch, if I sit back and look out the window, there are many lovely, old trees.   I couldn't wait for spring when the foliage would appear again, and I could sit and look out into the treetops.  It seemed like a grown up version of my dream childhood tree house.  Spring came, and with it the leaves filling out the trees, but instead of sitting back and enjoying the view, I found myself annoyed by the sounds of traffic from the street below and the beautiful spring days turned into the dog days of summer.  I closed the blinds to keep the sun from warming an already hot apartment.  Today, however, I stopped to notice the fully foliated treetops, and took a moment to enjoy the view.  I found that my breathing slowed down to a pleasantly relaxed pace and I thought back on those childhood summers so long ago.  Why had I closed off this one feature of the  apartment that I actually enjoy?

That got me to thinking about growing up, or worse, growing old.  Why are we all in such a rush to get there, whatever "there" is for each of us?  When do we stop having that youthful joy in the little things that make us happy?  And would the world be a better place if we all took a few minutes a day to allow ourselves to enjoy our own personal "tree houses"?  Sometimes I look at technology and I am amazed at all we can accomplish in our brave, new 24/7 world.  Other times, I feel a longing sadness for the simplicity of summers long gone, where evenings were spent sitting on the front stoop passing time with our neighbors, or enjoying the silence that allows us to slow down long enough to hear what we actually think and feel, to experience nature and other human beings as more than an annoyance to be endured.

I am as guilty as the next person; I own a cell phone, several IPODS, a computer and multiple TV's including DVD-R service.  But it all makes me wonder if maybe Miss Suzy, the little grey squirrel from the book, had it right all along, taking life slowly -- After all, wouldn't it be wonderful to fall asleep not to the sounds of the television, but to the sight of the night sky and the feeling of the gentle wind rocking us to sleep?  Maybe, just maybe, we could throw out that Ambien, and sleep the gentle, restful sleep once again that babies and children seem to.

Thursday, September 18, 2008

First Time Visits With A New Doctor

An annoying, but realistic part of being someone with multiple chronic illnesses from Fibromyalgia to chronic pancreatitis to endometriosis is that you will have many different doctors involved in your care.  Most people have trouble finding one doctor they are happy with, so multiply that by the number of illnesses most of us suffer from, and you can imagine what it must be like for a chronically ill person to find good doctors.  We are all looking for someone who is medically competent of course, but it goes so much beyond that, and what qualifies a doctor as "good" can vary widely from one patient to the next.  In my case, I want someone who not only knows how to treat my illness, but who knows how to treat me as an intelligent part of my own healthcare team.  In order for me to work well with a doctor I need to know that they respect how well I know my own body and what certain symptoms mean for me.  In return I try to listen with an objective ear to the doctor's experience and what their gut reactions might be.  So much of medical care is subjective.  There are tests that can rule certain things in or out, but at the end of the day I want a doctor who listens and really wants to do all he or she can to work with me on the best quality of life I can achieve.

Like everyone else, healthy or chronically ill, I have had my share of both good and bad doctors.  I even have a few that have been exceptional.  But it doesn't matter how long you have been sick, or how many good experiences you have had, it is still nerve wracking to have to start with a new doctor.  This can happen for a variety of reasons; you move, your healthcare plan changes providers on you, your doctor retires, or your relationship with your doctor is shattered due to something out of your control to fix.  Whatever the reason, it puts you back to a place that feels emotionally vulnerable. 

I moved from state to state almost a year ago.  In that time I had a lot of things going on with my health status that needed to be addressed.  Not having the energy, physical or emotional, to tackle them all at once, I started with one problem and worked my way through.  Doing this required meeting with new specialists of many kinds.  Some of the doctors were a great fit right away, some required a little tweaking of the relationship to make things work for both of us, and some weren't right for me, causing me to start back at step one until I found the right doctor in that particular speciality. 

Today I had a first meeting with a new gastroenterologist.  I felt all the old anxiety creep back in.  Would he be knowledgeable about my condition?  Compassionate?  Understanding of how all my other illnesses interrelate?  Would he believe in me and work with me to help me to live my life as fully as I want to?  Would he work well with the other team of doctors I have already assembled?  I had an actual knot in my stomach as I drove to the appointment this afternoon.  It takes so much physical, mental and spiritual energy to go through everything from the beginning and to try to assess in one meeting if this will be a successful relationship.  I certainly have had my share of bad experiences, and they always leave me feeling drained, spent and frustrated.

I had the pleasant experience of having dreaded this appointment today for nothing.  The doctor I met with was on time, professional, compassionate, thorough and wanted not only my input, but that of my other team members as well.  Although I am grateful for the positive experience, I am all too aware of all the times this has not been the outcome.  In a system that requires doctors to see ever more patients in a day, and a host of problems that require time and attention, you are bound to have conflict.  So I guess I feel I dodged a bullet today, but there are still several specialists I need to find, and I can't shake the feeling that, based on prior experience, they won't all go as smoothly as today.  That being said, I am thankful to have one more good doctor and life affirming experience in my saga!

Wednesday, September 17, 2008

The Fall Television Season

Do you have a favorite TV show that you can't wait for the return of?  Are you looking forward to a new show you've heard about?  Are you like me and bummed out that some of your favorite cable TV shows have ended for the season?

I am a big fan of TNT's The Closer starring Kyra Sedgewick.  The last episode of the season aired this Monday night, leaving viewers with a cliffhanger ending that won't be resolved until January 2009.  I also enjoy USA's Monk, starring Tony Shaloub.  The defective-detective and his odd assortment of quirky friends has been making me laugh for seasons now, and I always feel a bit sad on Friday night when there isn't a new episode to watch.

I am looking forward to next weeks premiere episode of ABC's Dancing With The Stars.  It is one of the few shows on network TV that I truly enjoy watching.  I know there are some people who get upset about some of the skimpy outfits, especially in the Latin dances, and they have a valid point, but it is also one of the most fun and purely entertaining shows on TV for my money.  The contestants don't spend the whole time plotting how to get rid of the other contestants, they actually cheer one another on.  It is fun watching people famous for something else try something completely out of their element.  I give them a lot of credit just for attempting it.

I am interested in what everyone else is watching these days and what makes the shows you watch appealing to you.  Please leave me a comment and let me know your opinion.

Tuesday, September 16, 2008

Health Insurance, Disability and Prescription Drug Coverage

I had actually planned a more positive post for today, but the advice I  have been given from fellow bloggers is "write from your heart", and today isn't the best day.  I am on Social Security disability due to all of my illnesses.  I have Medicare coverage and Part D coverage as far as prescription drugs go.  Last week I had dropped off two prescriptions to be filled, and when I went back the next day to pick them up, the pharmacist informed me that I had no prescription drug coverage.  

I spent all day that day on the phone with Humana, my part D provider, trying to find out what the problem was.  Long story short, I moved last fall from one state to another.  I notified both Medicare and Humana of the move and my new address.  Evidently, I was supposed to be signed up with a new Humana plan that covers the area I live in now.  I wasn't notified  of this, so I was disenrolled for coverage.  That meant that I had to re-enroll, which wouldn't be effective until Oct. 1, 2008.  I take multiple medications daily, many of which are life sustaining and cannot be stopped without tapering.  I spent the entire day working on getting this resolved, and by the end of the day I had been granted coverage to fill the gap between now and Oct. 1st when the new plan kicks in.  I got my two prescriptions and went on my way, thankful that things had been resolved, but exhausted from dealing with it all day and the stress it entailed.

Last night I called in a refill for a prescription after my pharmacy closed.  I used an automated system so the medication would be available for pick up this morning.  I just got a call from the pharmacy saying that when they tried to fill the prescription, they were informed by Humana that I have a gap in coverage and am not eligible for prescription coverage until Oct. 1st.  I have several doctors appointments this week, where I will get other prescriptions that need to be filled, and I am in tears.

I gave the name and contact information for the representative at Humana who "fixed" things last week to the pharmacy, and they are trying to get it resolved.  If they can't, I will be back on the phone trying to deal with this, while flaring and in pain.  I know this type of thing happens to all of us at some point or another, but it seems particularly daunting when we aren't feeling well.  I only  have a very limited amount of energy today, and frankly I have tasks I have to accomplish besides this.  I get frustrated that in the world we live, with automated phone systems and computers, it is so difficult to reach a human being and just get something resolved.  I am sure that this is some sort of error, probably the information hasn't been entered into the correct system, but why must I spend my precious energy dealing with a problem I didn't create to begin with, and one that I worked over 8 hours last week to settle?!!

Thanks for letting me have my rant and vent.  I know that all of you out there have gone through this type of frustration, whether it be with disability, Medicare, your doctor's office or some other entity.  I feel that there is no other group of people who understand better the physical and emotional toll these types of things take on us, who have enough to deal with in a day without any extra drama.

Today I ask for your prayers (if you pray), or your good thoughts and good wishes if you don't.  I hope this will be able to get resolved with the least amount of trauma possible.  I certainly don't have the financial resources to pay full price for the medications I need and I don't have the time to try to get them from the manufacturer or some other program for free or at a reduced rate.

Be kind!

Monday, September 15, 2008

Being A Friend

Last night I had the pleasure of listening to the talk given by Jo Franz during National Invisible Chronic Illness Awareness Week.  Jo's talk was entitled "How To Help Those Who Help Us".  Jo Franz has had Ms since 1977, so she knows of what she speaks.  She has a wonderful website JoFranz which is worth taking a look at.  She has also written a book, "Soar Unafraid:  Learning To Trust No Matter What", which I am looking forward to reading after hearing her speak.

I got to thinking about friendships after listening to the talk.  I think one of the best points made about being a friend to someone with chronic illness is that often people don't realize that the chronic-ness of the illness does not mean that it is going to remain the same.  In fact, for many of us the process is degenerative.  Because of this fact, many times we are left alone and forgotten.  Both Jo and National Invisible Chronic Illness Week founder Lisa Copen, talked about how much it would mean for people who are our friends to check in on us regularly and be consistent in our lives and with their help to us.

All of that got me thinking about what kind of friend I am and what kind of friends I am looking for.  For instance, it is easy when I am battling a flare to let things go, after all, I don't feel well right?  And while I am not one to beat myself up, I also realize that to the best of my ability I need to remain aware of what is happening in my friends lives even when things aren't going so well in my own.  The people I am closest to have always told me how much they appreciate the fact that despite my illness, I make time for them and their problems.  I remember their birthdays, anniversaries and kid's birthdays.  If they are going through a rough patch in their life,  I try to send a card of support or encouragement, or even leave a voice or e-mail message just letting them know they are in my thoughts and prayers.

By being a good friend, I model the behavior I appreciate receiving myself and I get to show my love for the people I care about.  I think it is easy to fall into the trap of feeling let off the hook for some of our friendship responsibilities because we have additional obstacles in our lives.  My experience has shown me that is a dangerous attitude to take.  You let your friends down, and ultimately you let yourself down.  After all, don't we want to treat others as we wish to be treated?

What kinds of things do you do to be a good friend to others?  What things do your friends do to help you that you especially appreciate?  How has someone gone out of their way to help you?  Have you had the opposite experience, such as the one I spoke of in my post on Friendship and Invisible Illness Week?  Please let me know your experiences with being a friend, and with finding friends who are supportive and understanding for the long haul.

Be kind!

Sunday, September 14, 2008

This isn't as easy as it looks (or I feel like a dinosaur today)


As I have stated and any readers can see, I am REALLY new to the world of blogging. This is my 4th day and I am feeling so frustrated and overwhelmed. I admit my age freely, heck I am proud to 41 years old. But lately I feel like a dinosaur when it comes to things technical. I have used a computer all of my adult life, so why do I find this blogging thing so intimidating? Each time I try to add new content or hyperlinks, or even to join communities, I come up against something new that I can't seem to grasp. Am I the ONLY one who felt this way in the beginning?

I have reached out to some other more experienced bloggers for help and two in particular have been more than helpful, most especially Connie from My Chronic Life and Jeanne from Jeanne's Endo Blog. I was able to make these two blog names hyperlinks by fiddling with instructions from Jeanne, and Connie is going to try to give me a hand with some other stuff tomorrow. I have to say, that despite the frustration and tears at not being able to figure some of this stuff out, I have been so uplifted by the help and support I have received from these two new friends. The blogging community, and the chronically ill community in general are so wonderful that it reaffirms my faith in humanity!

To Connie and Jeanne, thank you both for your help--with the blog, but also for all you are doing to help others with chronic illness to reach for their dreams and live their lives to the fullest!! You guys are my heros!

Be kind!

Saturday, September 13, 2008

Some of My Favorite Things

I think that for those of us who are chronically ill, and for those who are caregivers to people who are, it is especially important to have a go-to list of favorite things to pamper ourselves.  This list is useful during a flare of any particular illness, or even just on a particularly stressful day when we feel the need to refresh and recharge our batteries.

Some of my own list ideas include:
1.  Making a pot of hot tea to enjoy
2.  Re-reading a book that I find especially comforting.   For me that would include anything in the "Mitford" series by Jan Karon.  Her characters are so well developed that they feel like family, and it always brings me comfort and lifts me up to read them.
3.  Watch an old movie or tv  show on DVD, particularly if it makes me laugh.
4.  Pray the Rosary.
5.  Surf fun, light hearted sites on the internet such as or to have a laugh or smile.
6.  Talk with a friend about something OTHER than illness.
7.  Participate in a hobby, such as scrap booking, writing, painting, etc...
8.  Listen to music and sing out loud.
9.  Make a list of all the things I am grateful for.
10. Pamper myslef in some way i.e. give myself a pedicure, put lotion all over and give myself a mini-massage while doing it, take a hot bath or shower.

I find that when I do any of these things, it takes the focus off my illness or stress and brings me back to a place where I feel more peaceful and able to handle whatever I must.

I'll bet you have some go-to things that make you feel good no matter what you are going through.  I'd love to hear from others as to their own ideas of what they do to take care of and pamper themselves.   Sometimes we can get terrific ideas from others who have walked in our shoes.

I also want to give a special nod to all the people in my life who help me, especially my mom and close friends, and to say we need to make sure that those people are getting time to take care of themselves.  It is hard living with chronic illness, but it is also hard to be the caregiver or loved one of someone who suffers.  I got a great response to yesterday's post about friendship from Jeanne at (sorry I am still a new blogger and haven't figured out how to link yet!) who pointed out the frustration of the people around us who are trying to care for us.  She made some terrific points, and I urge you to look at the comment she posted yesterday for more details.  Her blog is a great resource not just for endometriosis sufferers, but for all of us with multiple chronic illnesses.  Thanks Jeanne for your input and support!

Now, go and do something special just for you--you deserve it!

Be kind!

Friday, September 12, 2008

Friendship and Invisible Illness Awareness Week

This is Invisible Illness Awareness Week, and Lisa Copen from has put together a wonderful program of conferences on many topics pertaining to living with chronic illness and thriving. Today on , National Invisible Chronic Illness Awareness Week Laurie Edwards will be speaking on "Friendship, Dating and Marriage: Can It all Come Together When You Are Young And Chronically Ill?".

This talk is especially poignant to me this week, as I have recently been let down by a long time friend. This person has been in my life for over 30 years, from before I knew about my illnesses, through first becoming sick, to becoming disabled to the current day. I really thought he understood what I go through, he has certainly seen enough of it first hand. But somehow he still just doesn't get what it is like to live with chronic illness, what types of things we face day to day that healthy people don't. He has had some of his own stress lately, and I attributed his change in attitude to what he was going through, but the end result has been his pulling away. I feel hurt and completely bewildered by his actions. I don't expect too much from him, or ask for a lot of support, but he seems to simply resent that he can't make it all better, despite the fact that I have never asked, wanted or expected him to. So instead of just being my friend, he feels he needs to "fix" me or leave. We are still in contact, but the friendship has been altered forever and my trust is shattered.

I wonder if any of you have been through something similar with a close friend, a spouse or a family member I think most of us don't expect the general public or even passing acquaintances to "get it", but we hope the ones who are closest to us will. I would like to hear your thoughts and experiences with this, if you feel you can share them.

I look forward to listening to Laurie's talk today and hearing what she has to say on the subject. I encourage all of you to go to the website and listen to any or all of the talks from this week. They are being archived on Blogtalkradio so you can listen at your convenience, and even save them to listen to again. I have found so many of the talks and speakers to be so helpful to me, and I hope you will find the same for yourself.

I found a wonderful quote the other day, which to me sums up what I look for in a friend. I want to close this post with it in the hopes that it may provide comfort to you as it has me.

"When we honestly ask which persons in our lives mean the most to us, we often find that it is those who, instead of giving much advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not-knowing, not curing, not-healing and face with us the reality of our powerlessness. . .makes it clear that whatever happens in the external world, being present to each other is what really matters." -Henri J. M. Nouwen

Thursday, September 11, 2008

Welcome to my world!

Welcome to my little corner of the world.  I am a 41 year old single woman living with multiple chronic illnesses.  Despite bad days, I have a zest for life, people, animals and all things fun.  I love to write and take photos, which I will be sharing with you in future posts.  I want to thank Laurie Edwards , author of Life Disrupted (a must read book, whether you live with chronic illness or not!) and blogger on, as well as Rosalind Joffe of, and of course Connie Roberts of, all of whom have supported and guided me with starting this blog.  They are all inspirations of how able-bodied those of us with disability can be.  As I start this journey I hope you will come along for the ride with a spirit of openess, adventure learning and participation.

To give you a little idea of some of my own viewpoint I choose to leave you with my favorite quote by Philo of Alexandria, "Be kind, for everyone you meet is fighting a great battle".  

Be Kind!