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01/26/10

Permalink 12:38:30 pm, by eleanor Email , 615 words   English (US) latin1
Categories: thoughts, Advocacy

AM I MY BROTHERS KEEPER

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I love the Holiday Season. The lights and the smell of the evergreens.  I always extend Christmas by celebrating the "12 days of Christmas".  I don't rush out after Thanksgiving and start Christmas. I need to rest and think about family and the nice things about  Thanksgiving.

 

This year we found the perfect tree and we put it up on our square grand piano. After the lights we added the collection of different ornaments and decorations that we have collected  over the 48 years we have been married. We put on Christmas music and each of us take a section to decorate. 

But taking the tree down is usually just my responsibility of which I don't mind if I have time. I always call for  help for the top ones and wrapping up the lights on the long cylinders.  It is usually not special just a bit of a chore.

But this year when I was taking the ornaments off the tree I heard about the Haitian earthquake. Looking at those picture's on television and the contrast of me in my comfortable home suddenly was very unsettling.

What was never a special event just taking the ornaments off the tree and putting everything away  became more special to me. As I looked at each ornament they brought back so many wonderful memories and I just had to pause and think about them.  And then I would think of those family's in Haiti who lost everything including so many of their loved ones. These ornaments and their memories became so much more precious to me.

And as I boxed them to go upstairs I felt certain that next year they will come down to be put up on a different Christmas Tree. This sense of continuity and the warmth of the season with my memories just spread through me with a sense of overwhelming gratefulness for my life.

 

I like everyone else sent money to the Red Cross . I have also followed the reports but have avoided any of the graphic pictures of bodies and the destruction because I find it so upsetting.  However,I do rejoice when I've heard a person was saved. I also rejoice that most people and countries around the world are coming to their aid.

What I also find upsetting is hearing people say that we have our own problems. Look at the situation with our own homes they say, and that we shouldn't be spending that much money on Haiti. I find that shocking and it really saddens me to hear some of my countrymen say that.

I'm learning more about the history of Haiti and the entrenched years of poverty there. However,the lack of understanding of the needs of the disabled community there brings my concern closer to home and more personal.

What would my life with MS had been like in Haiti? What about people with other disabilities? And now how are those people faring? 

And my last question?? How are they going to accommodate and meet even the basic needs of the newly disabled due to the earthquake?

The American Association of People with Disabilities (AAPD) has good information on their blog as well as organizations that you can give to to help.

http://jfactivist.typepad.com/jfactivist/2010/01/haitians-with-disabilities-suffering-after-quake-how-to-help.html

You can also go to United States International Council on Disabilities website for up to date information as well as Agencies that are helping.http://www.usicd.org/template/index.cfm

I've decided every time I complain about my situation I will put some money in my Haiti Box to be sent to help those with disabilities who need help in Haiti.

How about you?                                         ellie

12/21/09

Permalink 06:34:33 pm, by eleanor Email , 2460 words   English (US) latin1
Categories: thoughts, Coping, Advocacy, adapting activities

BE SURE TO REALLY INCLUDE PEOPLE WITH PHYSICAL DISABILITIES THIS HOLIDAY SEASON

image This is such a wonderful time of the year. This is the time when we visit with our with family and friends. And there may be some that we haven't seen for while.  There may be someone who has had an accident or a progression of a physical disability which was mild when you saw them last.  Or a young child whom you haven't seen before and who has a physical disability such as Cerebral Palsy or Spinal Bifida . Knowing how to react and feeling comfortable and making other people feel comfortable is always an issue. But can be handled well. So at this time hug, hope and love. Reach out to get to know the person.  Let them know of your concern and give an extra hug to them and to their child if that's the case and then move on to a topic of mutual interest that you both can share. If you sense the person wants to talk about the health situation then let them know you're there to listen. But don't push if they don't want to talk about it.

image

If the event is being held in a restaurant be sure that it's one that is handicapped accessible. Let the people in the restaurant know ahead of time. They  know the best table for a person in a wheelchair. And make sure that the restroom is also handicapped accessible. The rest room should have a raised toilet seat,grab bars and sufficient room to properly accommodate a wheelchair of average size 26/38. And also must have sufficient room for a 40-50 inch turning radius of the chair.  

If the person is able to a walk but is limited in distance.Tell them that also in the restaurant so that they don't have to walk too far to their seat. But then you had also better check the distance from their table to the restroom. And make sure that the restroom is also handicapped accessible.

You should also consider the distance that they might have to walk even before they enter the restaurant.  Where is that the handicap parking?  How is the lighting and the surface of where they would be walking over.  Is the distance they have to walk ok. If it is going to be much longer than they are able to. Then remind them to bring a wheelchair or check out if there is a local place where you could rent a wheelchair for them. If they can walk the distance but walking is very fatiguing for them encourage then to use a wheelchair.  Remember they certainly will enjoy the evening much more if they don't arrive all tired out. And if the person is in a wheelchair or using a walker check out that there are good curb cuts.

I'm reminded of two personal events. Years ago when I was still walking using a cane and my husband's arm for a longer distance's I went to a wedding.  At that time I had not bought myself a wheelchair but when I went to the grocery store or museum's etc. I did borrow a wheelchair because distance was becoming more of a problem. I was not sure of the distance I would have to walk in the hotel where the reception was being held. So I asked to have have a wheelchair available which they did. When I arrived we went straight to the cocktail area which was not very far. Inquiring on the distance to the dining room I was told that it was not very far at all. So I didn't use the wheelchair and preceded to walk with cane and hubby's arm. Well not very far is one thing to a person with no physical problem but it was much too far.  But I didn't give up I stopped three or four times as I was slowing up to a snail's pace and rested.  Of course I couldn't chat with people as everyone else did when they were walking along.  I did finally arrive in the dining room too exhausted to think but I made it.  As I look back now it was so stupid!  I should just have had someone go to get the wheelchair and ignored the people encouraging me to keep going as they did not know what they were talking about!  Somehow using a wheelchair has gotten mixed up in people's minds with the idea that a person is giving up.  Nothing is further from the truth! You give up when you don't listen to your own body and use that wheelchair so you also can participate fully in the event like everyone else.  

The second event that I'm thinking of is when I made a trip to my sister's about 15 years ago. My son drove me there and then after I visited several other family members who live close by my husband was to pick me up.  At this time I was using my wheeled walker with a seat for shorter distance walking in the house. I brought along my manual wheelchair so that I could go a longer distance on highway trips to the bathroom etc. or if I wanted to go out with my family to an event that required distance walking.

At my sister's  when we planned to go out to a restaurant I thought I might need the wheelchair for the distance.  But what we found was my light weight wheelchair wouldn't fit in her trunk. And as I was reassured it wasn't very far  I went with my walker.  My sister had to park a distance from the restaurant and as I walked along my legs again slowed down and then stopped several times.  Luckily my walker was one with a seat so I could just sit and then get up and walk a little further. But when we finally got into the restaurant I again had to sit but this time when I got up I'd just could not take another step so I sat on the seat of my walker and pushed myself with my feet backwards down the aisle to the long distance of where they were sitting to join them.

On the way out of course my sister brought the car close to where the restaurant entrance was.  My sister had seen me walk around the house with my walker so she assumed that I could do it. To her that wasn't a long distance !  But of course that was why I had brought my wheelchair and I assumed she would  know.  When we had all gotten into the car she turned to me and  stated with great concern she could not possibly have imagined that I wouldn't be able to walk that far.

Communication of the exact distance could have prevented the problem as it would have in the prior episode.  Thank goodness my walker had a seat and I was accustomed to periodically sitting and pushing myself backwards when I could not take another step.  When a person has a progressive disease they may not be the same as the last time you saw them. So be sure you check it out, sensitively of course. Obviously a emotion can be high when a person you love loses ability just as it is for the person losing it. 

 

How far can someone walk ? Will they be required to walk further than that distance.  Can they climb stairs? How many stairs?  Are there any special needs in the bathroom? Do they have a problem standing up and getting out of chairs? These are questions that have to be answered specifically not just a few steps or not that far is not good enough obviously.  And I don't think most of us have a concept of distance in as specific as how many feet.  But we of us who have a physical disability have to do that . And then it is our responsibility to communicate it to others.

I find that using certain facts are helpful to me in planning and  communicating the distance I can walk.  For example my house is 60 feet long inside.  This morning I could walk back and forth three times 180 ft. However I know by afternoon and evening I will gradually lose that and go  back down to 10-30 feet or less by night time. So if I'm planning to go a restaurant I think of my house and explain it to the person.

Now an outside distance like from a parked car to the restaurant you can use the following stats. The average city has from 15 to 20 blocks per mile, which range from a 264 feet to 352 feet for one side of the block. It Is not precise (NYC is 530 ft.per block) but it's within a ballpark of the average city.

When you I have an event in your own home visitability becomes an issue.  The passage of the ADA in 1990 opened up the outside world of public places, restaurants etc.for people with disabilities.

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But your private home is your private home.  Most homes have have been built with stairs to enter them.  These stairs can prevent any person who is in a wheelchair or unable to climb the stairs from entering your home unless modifications can be made.  Having a railing and good solid footing on the steps that are well cleared of leaves or snow as well as the walkway to them will make them safer. If a person can climb stairs with assistance it is a good idea to offer them your arm if two railings or their cane is not available. In either case having a person behind them as well as on the porch is most advisable.  If a person is using a walker they can be helped up the steps in the same manner. Sometimes like myself, they may need someone to lift their leg up. If they request this and this is their practice be sure to place their foot squarely on the upper step. You can place your hands on their hips to steady them as the bring their body up. And again have a person up on the porch. And then the walker can be brought up separately.

If a person is in a manual wheelchair they can be brought up in the wheelchair. You bring the wheelchair up backwards.

1. And you need two strong people.

2 one person in the rear who is in control.  He tilts the chair back to its balance point on the large wheels.

3.  The second person is in the front of the chair and firmly grasps non-detachable part of the front frame and lifts the chair up over one step at a time.

4. Both people reposition themselves on the next step and repeat the procedure step by step.

  Going down would be the reverse.You move the rider forward down the steps.

1.  Again the person in the rear is in control. Tilt the chair back to it's balance point on it's rear wheel and slowly roll the chair to the edge of the top step.

2. The second person stands in front on the 3rd step down from the top and grasps the chair frame . He or she lowers the chair one step at a time by letting the rear wheels roll over the stair edge.

3. Moving down a step you then repeat the process till you reach the bottom. Then return the wheelchair to it's upright position.

If the person that is visiting is not excessively heavy two strong young men should not have any problem doing this.  If you've never done this before you can always do a dry run. I remember when I got my wheelchair both of my sons practiced with the empty chair and then felt confident to put me in it to bring me up and down stairs.  I would not attempt this unless there were 2 strong men or women there to do this. 

I remember when I visited my brother's home his two sons who are strapping young men were quite able to do this.  But as my brother said he would have some hesitation and I would have more than a hesitation to ask my husband .

Then next option is a ramp. And if you have an electric wheelchair which is heavier and can not do a wheelie you would have no choice but to use a ramp. There are however portable ramps which can be used. But at a safe 12 to 1 ratio were talking a very long ramp if you are going to do a lot of stairs like in the picture above.

                 PB270005  I have a small portable ramp that will do 2 2'' steps.  Last thanksgiving I went to my nephew's.  We had a choice of my using my manual or my electric wheelchair as I was not walking at that time.  As their bathroom door was narrow and my electric wheelchair was narrower we chose that chair.  But they had 4 steps of 2 inches with  a long tread to enter their home.  They said not to worry they would find a way to get me in.  And they did as there were 4 strong men available.  As you can see in the picture we used my ramp for the first part. Then I stood with their assistance and support and had my legs lifted back up till I was inside in the chair.

      P3140005          I go to an historic church built in 1850. They put an an elevator in the church but the parish house has the stairs in the front like on the picture above. So they are using a portable ramp to go up the 3 4 inch steps in the back.  You can see the  length that is required just to go that distance up. The ramp is portable folds up in four sections and is put out when functions are held in the parish hall.

 

I think the ideal thing would be if you could rent a ramp so people that you know can visit you even if you are in a wheelchair.  I know I would like it personally. Right now I am able to walk and I can climb up steps with proper support. If my legs give out they can be lifted up.  A few years ago that wasn't the case and I was actually excluded from events of my friends and family because of it. That and MS Fatigue is kind of accepted. Maybe we have to change the thinking ?.then a little creativity with more understanding of the need to physically be with people we know and love will come about.

 

Be sure to call those who couldn't attend the special events this season and let them know your thinking cap is on.

Have a Happy Holiday Season                ellie

12/09/09

Permalink 04:54:04 pm, by eleanor Email , 285 words   English (US) latin1
Categories: Coping, Advocacy

INTERNATIONAL DAY OF PERSONS WITH DISABILITY-3 DECEMBER 2009

"Making the Millennium Development Goals (MDGs) disability-inclusive: Empowerment of persons with   disabilities and their communities around the world"image

 

                                                            "I'll sing songs,speak on it and sing about it" 

Stevie Wonder (the new UN Messenger of Peace) at the opening ceremony of the International Day of Persons with Disabilities on Dec 3, 2009.

In accepting his new role he stated that he understood the difficulties of people with disabilities and that he wanted to expand their possibilities. Two of the areas he mentioned he would like to help with were:1. lower prices for the technology that is so helpful to those with disabilities and 2.making it easier for them to travel.

For more information on the International Commitment of the United Nations to the people of the world with disabilities go to:

.http://www.un.org/disabilities/default.asp?id=1484 

And here in upstate New York 1/2 hour from my home is an indirect outcome of the world's commitment locally.

                                      "FLAME" 

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                       "Our disability will not stop us ." "We keep going and the

                       more we keep going ,we want more people to see what we do."

The only touring band in the world to be wholly composed of disabled members is an international success.  These band members live with conditions that include Downs syndrome, cognitive delays, autism, cerebral palsy and blindness.  For more information on this remarkable group go to:  http://www.abcnews.go.com/GMA/disabled-musicians-make-band-flame/story?id=9184434&page=1

and then check out their website  http://www.flametheband.com/bio.cfm

What a Christmas present for the soul! They bring hope and joy through their great rock music to so many and in return receive so much.

                                                       Ellie

12/07/09

Permalink 10:54:30 am, by eleanor Email , 1089 words   English (US) latin1
Categories: thoughts, Advocacy, adapting activities

BE SURE TO REALLY INCLUDE THE HEARING AND VISUALLY IMPAIRED THIS HOLIDAY SEASON

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This is such a wonderful time of the year.  It's a time of hope and love, a time where we can be with family and friends that we haven't seen for while.  So as we gather  in the various events with family or friends we have to remember those that are left out. Be sure to contact those that couldn't attend it will mean a lot to them.

But don't forget there can be some who are attending but are really not as totally present as they could be. I'm referring here to people with a variety of disabilities.  Some mild some more severe, some noticeable some less noticeable and some quite well hidden .

   image                 HEARING IMPAIRMENTS

Starting with loss of hearing I'm reminded of the visit we made to older friends we hadn't seen for quite awhile.  We were sitting around the table talking when suddenly Steve said," I can't hear a word you people are saying".  We sat there at first shocked then of course that's why he was very quiet.  I was so glad that he said that as it gave us a chance to talk about what you can do to include people who have a hearing loss.  We asked him what could we do to make it better for him. And  he said ,"you're talking too fast and not loud enough".  I also remembered from my experience as a PT in dealing with people with hearing loss that it is good to look directly at the person. This way he could read my lips and my visual expression so he wouldn't lose the nuance in the spoken word. image

We continued our visit trying to keep in mind these four factors. Speak slowly, clearly and loud enough to be heard and look at the person directly. And it worked very well.

Ten Commandments for Interacting
With Hearing Impaired Persons

I.          Thou shalt not speak to the listener from another room.

II.        Thou shalt not speak with your back toward the listener or
            while the listener?s back is toward you.           

III.       Thou shalt not speak as you walk away.

IV.       Thou shalt not turn your face away from the listener while
            continuing to talk.

V.        Thou shalt not speak while background noise (water 
            running, radio or TV playing, people talking, etc.) is as or louder than your voice.

VI.      Thou shalt not start to speak before getting the listener?s
           attention and while the listener is reading, engrossed in a TV
           program, or otherwise preoccupied.

VII.    Thou shalt not speak while your face is hidden in shadow.

VIII.  Thou shalt not obstruct a view of your mouth while speaking.

IX.     Thou shalt not speak rapidly or by shouting.

X.       Thou shalt be patient, supportive and loving when the
           listener appears to have difficulty comprehending what has
           been said.

And some basic rules for people who are Hearing Impaired to help them in their ability in lipreading   http://www.afthi.org/ 

 

   


        image               VISUAL IMPAIRMENTS

And when I think of someone with vision loss my brother- in-law is the one that first comes to mind. He has lost his central vision due to wet macular degeneration. When he visits he can see you peripherally but not if you approach him face on.  Sitting in our living room he takes out his special magnifying glass to be able to read. But this way he can share with us his thoughts on the article we're reading and talking about.

But there are many people who don't have as severe a visual loss but due to other medical reasons wouldn't be able to read it easily either. They don't have their close up glasses or the print is just too small even with their glasses. Or the light is not bright enough or it's too glary to read by. So they just pass the magazine along without reading and not being able to to participate in the conversation about it.

If you think you know one of your guests probably could have a problem with reading close up don't put small print magazines or coffee table books on your coffee table.  And if that's still a problem and people forgot to bring their reading glasses you can always purchase close up glasses in a drugstore. They are available in different strengths.  I myself have three pair with three different strengths depending on my eyes at the time.

And be sure that a person with low vision is sitting where there is no glare and very good light which  they can shine directly on the page.Do not leave things where they can be bumped into or tripped over. This can cause a visually impaired person to fall and hurt themselves, or damage the thing they have fallen onto.  Remember to have sufficient light in the hallways,steps,bathrooms and their bedroom if they're staying over. Remember no monochromatic table settings.  Contrast is essential for people with visual loss. 

HINTS AND TIPS FOR INTERACTING WITH THOSE WHO HAVE VERY LOW VISION OR ARE BLIND.

  • Speak in a normal tone of voice. People with vision problems usually have normal hearing.
  • Introduce yourself ? recognizing voices can be difficult for some people.
  • Speak directly to a person with impaired vision. Most people can answer for themselves.
  • Rather than using gestures and hand signals to convey instructions, directions or size, describe the information.
  • Be clear with your instructions. Many people use "right" when they mean "yes"; other words like "here", "there", or "this" are vague and don't give enough information.
  • It's o.k. to use words like "look" or "see", as they are part of normal conversation. People with impaired vision use these words themselves.
  • Let a person with impaired vision know you are leaving so that he/she won't be left talking to him/herself.
  • Last but not least, treat people with impaired vision as you would want to be treated.

If you go out to the local restaurant remember they will need help with reading that small print menu in low light. And if you go to church ,temple or mosque ask for a large print copy of the service sheet ands hymns if they have them.

An excellent resource is the site of the American foundation for the blind.  They also have a wonderful section on senior citizens which can be very helpful. Their site is : http://www.afb.org/ 

Have a wonderful holiday season             ellie

Permalink 10:20:30 am, by eleanor Email , 1291 words   English (US) latin1
Categories: my life, exacerbations, remissions, Thoughts, Adapting Activities

MULTIPLE SCLEROSIS AND BALANCE

I've been thinking a lot about balance lately. Probably because I feel that I'm fighting hard to stay in balance.  When we think of multiple sclerosis and balance safe mobility is what comes to mind.  But the balance I'm talking about is more than just safety in mobility, although that is critically important.

I have found over the years that to successfully cope with the ups and downs and more downs of Multiple Sclerosis having control of balance in all spheres of your life is critical. Control of your mobility, energy, emotions, and being able to do the activities that you want to do make such a difference in your life.

And the latter is what I want to talk about here. With loss of mobility and decreased energy (and that insidious MS fatigue) you lose time to do all you want to do. You find that how you spend your time, what you read, go to see,things you do is so dependant on MS.  When I was young and raising a family and working, gradually I was able to do less and less of what I wanted. My time was eaten up by my family and my work. Before I retired fully at 61 I had no energy left to do much of anything else even when working part time.

When I first retired I suddenly had all that missing time. I found myself reading books that I had to wanted to for years.IMG_0338-1 And to take up activities and hobbies I had given up that I had no time for like gardening.  I also took up learning how to use the computer.I've gradually been writing my family history which I share online. This family history was very helpful when we lost both a younger sister and an older brother within a year.  We share photographs, old family stories and memories. I also use the computer to make my own cards so their more personal.And of course there is e-mail.

These activities are ones I am able to pick up and do when I'm good (in a remission and my energy is up)and when my energy lags the project will still be there to pick up again.  

But the one area I found that wasn't as easy was going back out and being part of a group again or picking up with old friends.  As MS is inconsistent from day to day or hour to hour making plans was and still is difficult .  I was also losing mobility. In 15 years I went from using a cane to a walker to a manual wheelchair then an electric wheelchair.

A former patient of mine who had Multiple sclerosis called me when she heard that I too had multiple sclerosis and asked if she could be my friend.  In our conversation she mentioned that I should not to be surprised if I lost friends. She was right.When you can't plan, are in and out of the social scene and so tired so much of the time it becomes a problem.

Late last winter I changed doctors and meds. Then in the spring I went into a marvelous remission. I was able to go back to using a cane or walker for short distances.  I also had much less fatigue.  This new me decided to use my increased energy to do more with people like visiting my family, trying to renew old friendships and to meet new people.  I never understood the Barbara Streisand song " People who need people are the luckiest people in the world".  Being more isolated and away from people due to MS I now understand.

 

So when I went into a relapse again in the end of September I fought it. I tried to keep doing things the same as when I was in that wonderful spring-summer remission. Of course I couldn't and I just made myself more tired, achy and miserable. I was walking or wheeling around the house saying I'm just so tired ..I'm so tired. Then I began to think to myself just saying it had to make me more tired! 

Recognizing that a change of attitude was needed I decided to take up meditation again. And while meditating I remembered the Buddhist philosophy of unhappiness. They state that many times we cause our own unhappiness when we cling to what had been  making us happy and can no longer be.

Admitting to myself that yes I was in a relapse ( and the thought that maybe I would never get back to where I was in the summer is what was really bumming me out).  But as I meditated the reality that even though I was in a relapse I was still better than I had been for years. I certainly had survived being much worse. I knew I could use what I have learned during those years when I was not as good.. 

This realization really helped me. I felt I could work on  starting to get back into balance again. And without the baggage of fear of what might be, I knew things would be much easier.

So when I felt that fatigue coming I stopped what I was doing and rested. I didn't wait until I was collapsing. I found that just as little as 15 to 30 minutes could help.  Then I could get up and do some more things.  To be honest I'm not doing as much as I'd like. I'm trying to prioritize what's really important to me and what I can let slip. But the one very big plus is I'm not walking around in a state of exhaustion ready to snap at people all day!  I'm enjoying more what I'm able to do.

A perfect example of how well this can work and help        PA110001                       you to do what is really  important to you was when I went to church this past Sunday.  We go to an Episcopal church with a sung- Eucharist service.  We stand and  kneel and sit and stand and kneel and sit again and again.  We sing hymns and response's as well as praying  and listening. It's a beautiful service in a beautiful church with wonderful people but it's a physical event for me.  This spring and summer I was able to stand and sing out those lovely hymns I love as well as  participating more fully in the rest of the service.  But the last few times I went I tried to do this which I couldn't. And because I wouldn't admit to myself that I was becoming totally exhausted by trying I missed a part of the service which was important to me. That was "fellowship" going to coffee afterwards and talking to other members of congregation

So last Sunday I listened to my body and when the fatigue started I stopped and sat till it passed.  I still participated in the church service I just didn't do as much standing and sitting, kneeling  etcetera. And I made it over to coffee to chat and reconnect with people.  And then when I came home I took a nap.

 

We're having my nephew his wife and their two children over for Thanksgiving.  I'm putting this whole rest properly and prioritize routine in place.  If something doesn't get done it doesn't become an epic event. What matters is that I'm rested and there is food on the table(thanks to my son's) and we have a happy day with family and were all rested.

I hope all of you will do the same thing knowing your priorities and what's most important to you and then follow through. Have a wonderful Thanksgiving with your family and friends.

Stay well rested!!    Ellie

 

 

 

 

 

 

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Ellie’s Rules for Coping Well with MS and Disability
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