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 or that happened in my humble opinion. I wish I had not lost my father when I was 13, had my accident shortly after turning 15 and having to stay in the hospital for 13 full months and then coming home to lose my mother only 6 months later from pancreatic cancer. If it were not for my grandparents, my first common law husband and then my husband... I don't know where I would have ended up so I am SO thankful to them! When I moved in with my sister and brother-in-law my brother-in-law would not speak one word to me unless he absolutely unequivocally had to. He would not allow me to use my husband's name in his home and he put me down any opportunity he had. I am sure it is because of skeletons in our family closet that my husband and I uncovered and they did not like to hear the truth even though it was straightforward and in the courts. They just did not care for those skeleton keys to get unlocked by my husband and I. They thought they were locked up forever. I know that my mother gave them monies to help me after my accident but because of those other people who came into my life... my family was at his all from my care. My mother, my grandparents and my husband would be appalled and disgusted at what my two sisters and my brother-in-law and my two nieces did to me and they would be right. They had set up a wonderful "share they care" system that included me hiring morning and evening caregivers 7 days a week that or all fantastic and I did not have any medical professionals hurt me like they did here but there was nowhere for me to go in their little town with absolutely no apartment or house even remotely wheelchair accessible. My sister and brother-in-law put a nice little ramp onto their ranch style home only to find excuses for seeing me to move on when I *knew* I had nowhere to go. Even an able-bodied person takes a wild to find somewhere to move to let alone a high level quadriplegic like myself. When they let me know of this in the summer of 2015 and it got to be October of 2015 my brother-in-law gave me a time limit to move out. Simply unbelievable. They had been married since I was 3 years old so I was almost like one of their kids (they have two daughters of whom are my nieces). Before my mother's passing when I was 16 she had an addition built onto my *other* sister and brother-in-law's house for me to live which I did for a short period of time. Things changed and I could not see my mother when she was bedridden so she made arrangements for me to come and live with her even though it was on the second floor. The hometown we lived in volunteer ambulance and fire department helped carry me up and down stairs every day so I could work on finishing up high school. After that, because my other sister and brother-in-law's house with the addition was up in the woods and I could not get out to see family and friends... I moved in with my grandparents who lived right next door to my parents and who originally owned the property. Because I had lived with them a great that you're ready off my life when growing up they welcomed me with open arms and asked me to stay with them until their passing. My grandmother was 77 and my grandfather was 82 when I moved in with them. My grandfather eventually got colon cancer and passed away. In 1984 I met my first boyfriend after my accident when I was 20 years old and we were engaged. I would have lost my services back in the 1980s if we had gotten married so we didn't get married but stayed together for another 13 years until I was diagnosed with posttraumatic syringomyelia I had surgery for that which nearly killed me. I am pretty sure this scared my common-law husband since I stopped working because of low endurance and perhaps getting worse over the years (which I did as the pain set in). THANKFULLY & GRATEFULLY I met the love of my life who was 15 years my senior. He gave the world to me and more. Yep... be thankful every single second of every single day for what you have now if you are not in a nursing home or headed that way. This is also the first time I have had to live in an apartment and pay someone around the clock along with their room and board along with all my expenses which are rising daily. I don't want to be on 6 different medications and the co-pays are horrific but I just fall in between the cracks monetarily. I lost my front teeth in the accident and am going to need to have a lot of dental work done with no dental insurance. The last estimate I got was $5000 but I have not been back after all I have gone through over the last two years. When I was living with my sister and brother-in-law (between September 2012 in January 2016) after my husband's passing for 3 years I also had a great dentist and did not need as much time to work back then. They have always lived in a small town (in Pennsylvania) just over the border of where we all grew up. Only about a 90 minute drive were less but on back roads. The town I grew up in is now a dump sadly enough. The 'other' sister that I to still lives in that town over the last 46 years as well. Both of my sisters have lived in their same house with their same husbands. Except for my 'other' sister who also lost her husband 2 1/2 years ago so she is now a widow like me. I have a brother but he has been estranged from the family ever since my mother's passing. My eldest sister (whom I lived with for those 3 years in the small town in Pennsylvania) became the executrix of the will and rented out for different dwellings on my parents and grandparents land. My brother told me some of that money was supposed to go toward me and my care over the years but I never saw a penny. Sorry to complain about the last 2 1/2 years of my life and right up until this moment when my bladder pain is so bad I can hardly think straight but, again, I am truly thankful for all those people who DID come into my life and really helped me and sacrificed so much for me! ~Lori PS - pardon any typos but I am losing a lot of energy and I don't want to have one of my stress related seizures that are also caused by losing too much air (by using Dragon to explain all of this) along with being in pain and exhausted (the other two things that bring on the type of seizures I have). On Mon, Oct 15, 2018 at 6:07 PM <poaj...@sbcglobal.net> wrote: > 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 > > > > > -- "Petting, scratching and cuddling a dog could be soothing to the mind and heart and deep meditation and almost as good for the soul as prayer." ~Dean Koontz
