Coping, disability, Family, growing up, Life, Loss, Love, Motivation

Figure 8

Now, I know everyone has his or her place they go to get away, to find some peace and quiet, and to have just a little time to be away from everyone and everything. It may be a big cozy chair in the corner of a room where the sun shines in with a good book in your hands, a park bench that is off the beaten path, a little coffee shop on the corner, in your car driving through the country with the top down, riding a bike through those beautiful tree tunnels that make you feel like there is a completely different world waiting for you at the other end, going to the batting cages until you have used every last available quarter you can find in a 20 mile radius, floating on kayak at dusk when the water is like glass, sitting in the sand letting all your senses take in everything that the ocean can give, or laying in a hammock while the breeze rocks you to sleep. These all were my getaways before the wheelchair. My spot now… my momentary timeout from life is rolling down the road in big figure 8 around this beautiful lake that I call home. On a day when I need a little extra time, when things are weighing on my mind, or I want to escape and listen to a few more songs and my charge on the chair is still on green, I buzz right by our driveway and go twice. Everyone around here knows this as my “roll,” and I have met so many people over the years just by waving and saying hello. As long as the sun is shining and the weather permits, it is a daily event for me. I make sure my seatbelt is secure, I hook my mirror up so I do not have any surprises sneaking up behind me, I put my chair up to rabbit speed, the headphones go on, and the music goes up. The sun, the wind, the water, and the music relax me and somehow ignite my creativity all at the same time. It is on my rolls where I come up with the best ideas for writing, and it is also my place where I try to let go of worries, cry over the loss of people I love, smile at random memories that my music brings back to life, vent my frustrations, talk to my little brother whose presence I feel every moment I am by that water, sing my heart out along with the music flowing in my ears, and cope with things that I do not like to speak of. I have had a few people ask me if I get bored of rolling and seeing the same sights every day, and the first time I responded to that I remember exactly what I said….. “It is so pretty here, and I see a different kind of pretty every day.” Every day I roll around the lakes, no matter what kind of day I have had, I can honestly say that I see at least one thing that makes me stop and just look. Today was no different, and it was a day where I had all sorts of thoughts bouncing off of each other while I navigated my figure 8. This is what my roll stirred up…

I once heard the saying, “If you are lucky enough to live on a lake, then you are lucky enough.” As I sit here on the dock and look out at the water as the sun is going down I really do know how lucky I am. For many of you that know me, you know that my permanent home is now on the lake, and a beautiful lake at that. Now, if I had to make this change five or so years ago, I know I would not have appreciated it as much as I do now. I would not have been ready to leave my friends, leave my home and everything that was familiar to me, leave the faster pace of life. Now that I’m in my “northern” 30s my mindset is completely different, and I have realized how much can change over just a few years. I know what has brought this change in me; it is a combination of things…

First is that I fell in love. A strong love. An honest love. I could feel my priorities in life completely shift when love showed up like it did… unexpected but at the perfect time. The lakes allowed me to be closer to that love, and that love washed away any doubts that were lingering about moving away from what was familiar to me. Love is a powerful thing and it made me feel safe. The second is pretty simple… I grew up. I have developed amazing friendships that have an unspoken mutual understanding that being an adult is not for sissies and life sometimes can keep us apart for a significant amount of time, but we truly cherish every moment that we now have together. Yes, I miss them every day, but at this age I have been blessed with such a solid foundation of true friends… friends that are constant no matter what life deals out. Third, I enjoy the slower pace of life here, and every single time I say it I shake my head and smile, because I hear my 70 year old neighbor say the same exact thing. I love the little bar on the corner where “everyone knows your name,” knowing that I can look up at night and see so many stars that are not faded by the lights of a busy city, having friends visit so they can relax, living near a one stop light town that still celebrates its settlement days with a beer tent and live music, cooking dessert over a campfire, and losing track of time with friends out on the water. The last significant piece to all of this is my little brother. He continues to teach me things about life, even after he passed away a little over two years ago. This lake is his final resting place, and the feeling of being close to him makes me feel more at home than anything else. It has brought a new calmness to this beautiful body of water that I wake up to every morning. It is a calm that I did not feel before, but it is real and I know Eric would want that for me… he would want that for all of us.

I have come to realize that it is the people, the love, your frame of mind, it is life, it is loss, and it is the experiences… however large or small that make a house your home, and each spot where we land is like a stepping stone through life. The stone I am on right now is a good one and the view is not too shabby. So, for right now I’m going to keep rolling my figure 8, and waving at people that I have yet to meet, and singing along with my music, and writing about my life… and always trying to find that “different kind of pretty” every single day.

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disability, Home health agency, Home health care, Life

Home Health Care Epidemic

For the past 12 years I have relied on the help of home health nurses, and home health aides to start my day. The mornings of simply rolling out of bed, and throwing on some comfy clothes have gone by the wayside. My mornings now begin with a specific routine that takes up to the span of three hours. My nurse comes every morning and assists me with getting up, showering, stretching, getting dressed, and getting situated in my wheelchair for the day. I have been with various home health agencies, and I have had many nurses over the time that I have been in my chair. I have a current nurse that has been with me for close to four years, and we have our routine. We have spent many hours together, and she has become a very important part of my life, and I know I am one of the lucky few that has been blessed with nurses that truly care for me.

I feel that I am in a position that allows me to be the voice for those in my similar situation that do not have the same support system as I do. I am currently with my fourth home health agency, and I am completely aware of the decline of home health care in Indiana. It is by no means the fault of the clients that require care at home, I truly believe the fault lies within the home healthcare agencies themselves. I was with an agency for 10 years, and I was released because the agency stated that they did not have enough nurses to cover my hours. Since I was released from that company almost a year ago, I have contacted a nearly 14 page list of home health care nursing agencies, and I received the same answer almost every time…. “We currently do not have enough nurses to take on any more clients at this time.” I fortunately have a nurse that has stuck by my side and she has hired on to every company that I have been forced to skip around to.

Recently, there was an article written by Suzette Hackney in the Indianapolis Star about a woman by the name of Karen Vaughn that hit very close to home with me, and I am sure with many other people in similar situations. Karen is a quadriplegic and a disabilities advocate. She relies fully on constant skilled nursing (20.5 hours every day) because she has no movement below her neck, and she breathes with the aide of a ventilator at night. Vaughn was hospitalized for pneumonia, but when it was time for her to return to her apartment she could not because the home health agency that had been providing her around the clock care would not take her back on because they did have enough staff or nurses. As a result, Vaughn had to stay at IU Health Methodist Hospital. The cost per day was $2,200. After her 11 month stay at the hospital, she had no choice but to go to a nursing home. Not only has Vaughn’s mental state been negatively affected by the stress of being in a nursing home, the level of care that she receives has diminished compared to the care she received at her own home. For Karen, there are so many things at stake along with her health and mental state. She is at risk of losing her apartment, she is at risk of losing the small amount of independence that she still has… she is at risk of losing so many things that others take for granted.

Vaughn is just one of the many who are in this unfortunate situation. It is a problem that is becoming all to familiar, but it somehow continues to be overlooked. This is also a problem that is not going to go away anytime soon. Along with the many people who have disabilities that require home health care, we are a country full of baby boomers and wounded veterans that will need care. The demand is rising, and it is rising at a rapid rate. The number of people that require home health care just in the state of Indiana has gone up 60% over the past three years. There are nurses out there, and I know this because I have been dealing with home health agencies for almost 12 years now. I also know, that a majority of home health nurses are being overworked and not compensated for it. Maybe one of the first steps begins with these agencies taking care of their nurses with better pay, better benefits, better organization, better incentives. At times, acknowledgement and a sincere “thank you” to a nurse that has given up his or her personal time with his or her family to pick up a shift or help a client can mean so much. Although, I know there is no amount of “thank you’s” that I can extend to my nurses that even comes close to showing the level of appreciation for the sacrifices and care they have given me.

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Something has to change, and creating awareness can be the beginning of that change.

I am a hard-working and determined 34-year-old woman just trying to live life like everyone else. I will not pass up any opportunity to be an advocate for those with disabilities, or to be an advocate for anything I wholeheartedly support. Everyone has a purpose… and I truly believe this is mine.

Indianapolis Star, Hackney: Disabled Advocate Loses Fight (Full Article)
Indiana Home Healthcare Agencies  (Website)
Top 30 Cities for Home Health and Personal Care Aides (Website)
1 Milwaukee, WI 

2 Waterbury, CT
3 Peabody, MA
4 Duluth, MN-WI
5 Rochester, MN 

6 Minneapolis-St.Paul, MN
7 New Bedford, MA
8 St. Cloud. MN
9 Tacoma, WA
10 Fargo, ND-MN
11 Columbus, OH
12 Poughkeepsie-Newburgh, NY
13 Albany-Schenectady-Troy, NY
14 Ithaca, NY
15 Worcester, MA-CT
16 Rochester, NY
17 Grand Forks, ND-MN
18 Mankato-North Mankato, MN
19 Barnstable Town, MA
20 Monroe, MI
21 Pittsfield, MA
22 Racine, WI
23 Tucson, AZ
24 Nassau-Suffolk, NY
25 Kalamazoo-Portage, MI
26 Boston, MA
27 Providence-Fall River, RI-MA
28 New Haven, CT
29 Lancaster, PA
30 Chicago, IL 
disability, Life, Motivation

First blog post… My Top 5

 

I have spoken to many groups ranging from kindergartners to adults about my journey over the past 12 years of being in this wheelchair. Sharing my story and my experiences is something I truly love to do. Over the years of talking to so many different groups, I have learned that no matter what the age is that I’m speaking to, I get asked some of the same questions. One of those questions that I love to answer is, “Annie, if you regained all your movement and strength, what would you want to do first?” It is so hard for me to just pick one thing, so I will break it down into my top five.

1. SOFTBALL! I would grab my batting gloves and my favorite bat, and I would go to the batting cage and hit softballs until I couldn’t lift my arms anymore. I love softball! I played four years of varsity softball in high school, and after high school I played as much as I could fit into my schedule. The sound of hitting that softball just right… in that “sweet” spot… It is a sound that I will never forget, and it is a feeling I miss so much!
2. DANCE! I am by no means a good dancer. Actually, I’m awful at it… but I do remember how great it feels to just lose yourself on the dance floor. Now don’t get me wrong, I still can do a pretty wicked shoulder shimmy, but it just does not compare to dancing the night away.
3. COOK! I’m Italian, so cooking is an inherited trait that has been passed down through my family. Cooking was something I used to do all the time before my accident, and it was also something that I never thought I would miss. Whether it is cooking for myself, or surprising the one I love with a big plate of homemade spaghetti… I miss it!
4. RUN! Yes, you read that correctly…. I said, “RUN!” Back in the day I was never a distance runner, but if there is one important lesson I have learned with being confined to a wheelchair, it is…. “Where there is a will, there is away.” So, you can bet that I would work at it… and I would run… and run… and run.
5. PLAY CATCH! It could be a football, a softball, a frisbee… I’m not picky. I love the feeling of throwing the perfect spiral with a football, the “smack” of a softball being caught in a leather glove, or seeing a frisbee glide through the air. It is so simple, but so satisfying.

So, that is my list. As I was writing it, I realized that every single one was something I took for granted. I never thought that the last time I did each of them that it would actually be my last time. I do not think many people look at the “simple” things in life that way. That is one of the most important reasons why I love sharing my story… I want to help you to embrace the little things. I am a true example of the saying, “You will not miss it until it is gone.” So, never forget what is important… never forget that life throws curveballs… never forget how very precious life is… and never forget that you get this one chance at life. So, hit the ball, shake your booty, embrace your inner chef, run the marathon, and celebrate that perfect spiral.

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That’s me… Center Field my Senior year of high school… doing what I love…