Re: [QUAD-L] 25th, and now 28th anniversary
You couldn't have said it better for all your blessings Joan!!! I would have said the same if the last 3 years of my life have not gone downhill dramatically in every direction. I have pretty much lost all my family now and, for the first time, living all alone and, in doing that, somehow I came across the most terrible physicians and a home health agency nurse who, for the first time in my 39 years this month, damaged my urethra beyond repair by blowing up the balloon inside inside my urethra when changing my catheter requiring surgery and having to switch urologists... twice. I thought switching (or being forced to switch) to an SP catheter would be much better like so many friends have told me that it was but I have had one bladder infection after another. And the symptoms just started last week that half always been indicative of a bladder infection for me. The bladder and flank pain has paralyzed me. Now I am told that I am "colonized" and pretty much depend on IV antibiotics. Then, with all the stress I have been through over the last 2 1/2 years it has caused much more including psychogenic nonepileptic seizures (ever since my husband's death) and my lower extremity "Dependent Edema" is only getting worse. I have to stay in bed several days in a row for my ankles and feet to go down. I can't take any diuretics because they lower my blood pressure too much and the gradient compression stockings do not help either. My dependent edema just stretches them out. I have only one person in my life (my live-in caregiver) and have to pay a ton for when she goes to visit her boyfriend which is in the contract. I am thankful that I found her and it was a miracle that I did after my husband died and then my family found me to be an inconvenience in there life after 3 years. They were not thinking twice about putting me in a nursing home and were not going to allow me to advertise but I did so anyway. I was not going to let my Golden Retriever daughter (whom my husband and I adopted together in 2009) be separated from me. My live-in caregiver likes to eat at a separate time from me so I have eaten all alone except before my Furbaby passed away. This will be my first holiday season without any family or my beautiful Golden daughter. I have been searching for another Furbaby but have not found one yet that is a good match. My life, after going through all that I have over the last 2 1/2 years, has worn me out. I don't know what I am going to do when my caregiver decides to move on since I was so much more healthy when I moved in with her and hired her. Now that I lost my last link to any type of family (my Golden Retriever daughter who meant the world to me) and after the 3 weeks I spent in the hospital (between June 28 and July 18) this year when I had a bladder infection that my one urologist would not treat and I couldn't eat I was in so much pain. As a result, I wiped my way too much sodium out of my body whereby I was delirious for a day and a half and almost chewed my finger off without realizing it. But I made it through that! What is hurting me most is the medical bills that keep pouring in. I am only eligible for Original Medicare. If I choose a Medicare advantage plan I will lose my skilled home health care and supplies that I desperately need. I have checked into every option and I still don't qualify for any type of Medicaid or Medicare and Medicaid. I have educated myself many times over about my financial situation and I am just one of those square blocks that does not fit into a round hole. All of you who have family and a home and did not have to get rid of all that you owned (which I did after my husband's passing and to be able to go live with family only for me to need all of those things again and having to purchase them again along with sentimental things I will never get back) ... never take anything for granted! I had everything when I had my husband! We had everything we needed or wanted from our previous relationships to our 15-year-old marriage. Just looking at those pictures that my husband took (he loved photography and took hundreds if not thousands of photos when we were together with 3 different digital cameras) make me realize how fortunate I was. As a lover of music from the 70s I am very familiar with most all 60s, 70s, 80s and some of the 90s music and in particular the group "Bread" with the lead singer being David Gates ... somehow I missed a song that they put out that I surely wished I had heard before losing my husband. It is a most wonderful song and has more meaning for me now than ever albeit somewhat sad. "Everything I own." https://www.youtube.com/watch?v=-Q1kB0R4Ijs says everything. OR with beautiful clouds and the lyrics to view seen here: https://www.youtube.com/watch?v=2i43aAn2rq8 It will be just be a couple days before it will be 39 years (October 19th) since my injury but I surely don't call it an anniversary or a celebration. It is just something that is
[QUAD-L] 25th, and now 28th anniversary
I wrote this back three years ago, and I still feel the same way. Sorry it is so long. 25 years, a quarter of the century, almost one third of my life. Where did the time go from that moment when I fell off the scaffolding and tried to move my arm and realized it did not respond? That was the start of my new life, and although it is not always a home run, it certainly is not a strikeout either. So many people who have helped me, encouraged me, devised a little something that made my life better, cuddled me when I needed it, scolded me when I needed it, and just simply told me to buckle down and get on with life. Thanks to each and every one and you know who you are. Family, friends, therapists, doctors, and yes many strangers. To every little kid (some of them not so little but just as curious) who asked me why I was in a wheelchair, how did I drive my chair without my hands or arms, who offered to help me, I say thank you and bless you that you accepted me for the person I am, especially the young one who wanted to race me and when I won told me to get out of my chair and he would drive it and win! I love you all. I appreciate all of the strangers who are so helpful and kind and open doors for me without my asking, offer to carry my packages out to my car, ask me if I would like a drink from my cup on my wheelchair, or would I like something to eat while I am waiting for someone at the food court to pick up our orders. I don't believe for a minute that the majority of people do not want to help or look down upon me in the wheelchair. Conversely, I love the smiles, the how are you doings, and the people who say- isn't it a great day to be outdoors or shopping or whatever. To the very few and far between people who say or imply something such as " my you really know how to use the wheelchair" I try to smile and reply " you do really well on your feet also" and make them laugh. They probably will think twice the next time. Being a total C4 quadriplegic was definitely not my game plan for my life, but honestly things could have been worse and I am looking forward to what the future holds. I have already outlived by 10 years what they told me at rehab in 1990, so hopefully the rest will be a piece of cake! Thanks for letting me celebrate 25 years. I was going to write something, about today been 28 years, but my child posted my 25th anniversary letter, and after reading it again and thinking about what has happened I have nothing more to say. Life continues on, good days bad days average days, and I am thankful for all that I have and my circle of friends and family. What more can we ask for? "Nothing is impossible, the word itself says I'm possible" Audrey Hepburn
