Adjustment

I certainly want to go home but I'm going to be slower than slow. I won't be called "sweetie" but I'll have to do everything myself. I won't be using a bedpan but getting on and off the toilet and bed won't be fun. I won't have therapy sessions but I'll always be concerned about my strength. In the end the pro's and con's aren't equal, home is where the heart is. Even if it seem like a mixed bag. Going home is the goal regardless of when it happens, this week or next, so it may as well be now. I really miss having my computer and youtube shows. I thought a television would be great but I'm not so interested. I guess one misses what one doesn't have.

Finding New/Real Connections

Today I met 2 professionals to whom I gave 1/2 of my business cards. Somehow I new eventually the right people would make themselves known. First was a woman who helps people get connected to attendant care services. She connects many others and totally empathized with my plight. She was happy to hear about Infobility and asked if people could contact me. Second was a social worker who works with another wing in the rehab center. She was impressed and was asked by my caseworker to enroll me with Res Rose Transit and assured me that I'd be eligible by middle to late January. I will not be stuck inside for the entire winter.

"Work on getting better."

People say that phrase a lot to me. What does that even mean? Is it about exercising as much as possible? Is it about praying and asking others to pray for you? For me it means filling my mind up with only positive thoughts and concentrate on the activities I'll be doing once I return. It doesn't work to focus on myself and my operation. If that's the case I'll just go crazy cause this dumb numbness is not going anywhere. Being here is also driving me crazy. Today I was so tired of the usual CNA dialogue that I just bathroomed myself! Why oh why would I concentrate on getting better?

A little bit of help is a really good thing

I was always a very hard thing to accept. My "no" offended many people and lost a lot of possible friends since that's a good way to get to know others. After this situation I know I am starting from wayyyy behind the 8 ball. I know at first if I went to get anywhere I must accept a hand or two. I am determined to change my mindset a bit and be careful not too get to used to it. I will find a happy medium.

Disability 101

Three times Hershey made my life harder because the people never took my disability into account. Rules made no sense and the concept of a wheelchair seemed to be foreign. In one case it was suggested that my wheelchair be left behind. WHAT? In another case they wouldn't transport it with me. WHAT? It felt like it would be baggage on an airplane- if it arrived in another town ....oh well. It seem so easy and logical to implement some lessons into the human resource training. The worksheet on the Ten Commandments of Communicating with People with Disabilities."

Sticks and Stones

Cutesy names stopped bothering me long ago cause I have to pick my battles. I am learning to ignore the "stuff" and concentrate on getting physically stronger. It's not going to change but my reaction can. It's like water off a duck's back. Furthermore, Select Medical won't support me so I won't fight air. I'm concentrating on how to manage my family. They're doting over me, negative and stubborn about what I say and I'm their only daughter so they keep holding on so tight that they're squeezing the life out of me.

Respectful Actions

The CNA's got me sooooo mad because I say please speak to me by my name. Occasionally they would but still treated me the same way. Now, O don't try to give everyone a mini sensitivity lesson. However, I've noticed that the same people who call me pet names hold respectable conversations with me. The wouldn't if they didn't have any respect for me. Also I do things like shower at 4am, sweep the floor when I spill rice, and return my ray. No other patient does that thus my actions shoe respect too. Lately my request was to see my file- they actually can't remember a patient asking to do that. Again, acting in s respectable manner

Trying a New Transfer

A message I've been repeating over and over is "you know yourself best/ you're the expert on you." I have been learning new ways to do old things, exercising body parts I didn't think mattered, and trusting people more. 1) I haven't used a board to transfer in a long time; it's long, heavy, narrow, and thick so I expected it to be more of a problem then a solution. It turns out that in some cases it does help, especially when I'm being helped by the CNA's. I was sure my legs, which haven't worked in 30 years were useless. Instead I understand how they do effect my transfers. Some exercising of them is a good thing. 3) I have managed independently for years. No one was around at all so I figured it all out or it didn't get done. I am starting to allow CNA's & therapists to do it their way, "if you can't beat them join them." Sometimes I surprise myself and other.

The Silver Lining

I used to be the picture of that because I knew nothing else. Negative begets negative and I have no idea how to change it. I learned that there's a flip side to everything and I started to consciously think of how things could be worse then realize they aren't so bad. After practicing this over and over it became automatic. Suddenly good things began happening and I became amazed and thankful over and over. I tried to figure out what actually changed so I could ensure continuation of the positive and not slip back into the big black abyss. So it's crucial to steer clear of the negative and welcome the positive.

You Know You

Many times professionals insist on following the standard procedure even though it makes absolutely no sense for your case. On a few occasions people tried to show compassion and lied to make you feel better. That made it so much worse. 2 example are my getting to the hospital and my getting to the rehab. Story 1- The surgery was scheduled for 5am so I figured I'd go to the hotel the night before then take the hospital shuttle which goes there anyway. Suddenly I was told the shuttle won't pick me up nor would it go that early. WHAT? then some no-name lady said don't worry just do it anyway and call this number or this number it will be fine. I said all along I'd bypass the hospital and sleep sitting up. Guess what we did? Story 2- Transport to the on-campus rehab center was more than willing to deliver me but not my wheelchair. WHAT? I knew the shuttle would take my chair with anyone but me (who needs it) inside. The caseworker said they'd make arrangements as soon as possible. Not good enough because no one knew when that would be. So I instructed mom to sit in my chair and take a shuttle ride while I went with the EMS. We all arrived at the same time and all worked out.

A Crucial Component

There are books and books about the importance of a positive attitude and people make a living speaking about it. I have spent most of my life surrounded by the opposite message and where have I gotten? Therefore I am taking a very firm stance in the opposite direction. At this point it has become a big part of my persona automatically. That can't be a bad thing though it's not going to cure me of my stenosis. It does help with my pain level. When I'm asked about the pain level I have to think for a bit cause it's not something I focus on consciously. That is because focus must be on therapy, transferring over and over and over. I am at the point that if someone is negative, like my parents, I ask them to leave.

Learning

I have already learned a lot and it's only day 7. Here are some of what I picked up thus far...1) a positive attitude is crucial; 2)if a problem has arisen and the person does not sound like they have a solution start working on one immediately; 3)do not be around negative people; 4)just cause transfers have been done a certain way for years it doesn't hurt to try a new way; 5)respect isn't always through words but by actions; 6)continuously being upset by being called a cutesy name must be ignored, otherwise you'll go crazy; 7)non medical personnel who work in a hospitals are clueless about disability; 8) it's okay to accept more help than you ever have before; 9)the best way to recover is to concentrate on other things while exercising; 10)medical professionals are sincerely interested in connecting people with my resources. Now that I'm up and moving I will concentrate one lesson each day. I'll probably have 20 before I am on my way home.

Insurance

That's the real entity in charge. People who have no idea what is needed for a person who has a disability to begin with make big decisions. I am requesting to be admitted to a hospital the night before the 5am wake up call. Why? Aside from the fact that the hospital will NOT transport me from the hotel down the street; my condition has really declined and a few hours won't be such an impossibility to arrange. Since I was warned of the out of pocket expense I am armed with a letter to the director of admissions justifying my request. I am sure most people just "hope for the best" but not me. I am all about anticipatory measures. This will surely raise some eyebrows. I will be remembered- hopefully in a good way.

Disability?

Hospitals are unbelievably unfamiliar when a disability question is posed! They refuse to drive me 3 miles from a local hotel to the hospital; they have not idea what to do with my power chair once I am put in a gurney; they give incorrect answer when asked about accommodations. I was even asked, by a pre-registration staff, how I feel after walking a flight of stairs. WHAT? If medical professionals are clueless but considered to be the experts that's pretty scary... and harmful. I have been given medication that has made me even weaker than I was to begin with! Sensitivity training for doctors, nurses, and paraprofessionals is crucial but of course no one would admit their lack of knowledge. It's so sad because the person is really not respected or even consulted but the individual is the REAL expert.

Meditation

That is my next project before I get this surgery. I never did it before, I never thought it would work for me, and I never really learned it. I usually have the opposite problem- too many thoughts in my mind, not clearing it. I guess it is like anything else, it can be learned so that's what I'm doing today, tomorrow, and Sunday. Meditation 101. I have a cousin who does it regularly and she suggested some websites. I am going to buy a book and read it up till the last moment. I think this is the way-focus forward not on needle pricks, invasive tubes, or the upcoming pain. That is a waste of my energy, if I can just block it all out and some how be outside of my body (on the sidelines), it will all be more manageable for me and effective for medical professionals.

Helping each other

The girl that will be my attendant in 1 month has been a physical therapy student for years and conducts aquatic therapy programs at a local recreation center. She spoke of going to school after she graduates and eventually having her own therapy business. I was so excited because I could she it was something she had limited time, money, and business knowledge but she'd be an amazing director. Her vision was to offer non-traditional therapies (aquatic, music, nutritional, animal)as well as the standard physical modality. I can figure out how to get it approved for veterans then do marketing and find funding. It would be called The M.A.N.A. Center and will provide her some real income and me a really good way to empower consumers. The best way to help oneself really is by helping others.

Strength comes from the inside...A Fable

The sun and the wind quarreled as to who was stronger. The wind said "I'll prove I am. See the old man down there with a coat? I'll get his coat off quicker than you." So the sun went behind a cloud and the wind blew and blew till it was almost a tornado. But the harder it blew, the tighter the man clutched his coat. Finally, the wind calmed down and the sun came out smiling upon the kindly old man. Presently,he mopped his brow and removed his coat. The sun told the wind that gentleness and friendliness were always stronger than fury and force. Sometimes it is the person in the wheelchair who can barely move that is the loudest.

Disability booklet

"Do-It-Yourself Disability" is what I will be sharing with patients and professionals at Hershey while I have surgery. Not some downloadable attachment to put together or delete. Not a website to search for my 25 programs just something simple, pretty, unique, and practical. It was suggested that I repackage Infobility so that's what I'm doing. I'm excited that I'm going to try this method. I'll ask to speak on the 17th at the support group. I'll show the 10 Commandments too and get consumer feedback. No more presentations for employers or strays focus will be on empowerment for individuals and in the end I will have employers requesting my program. Slow and steady the turtle finishes the journey.

My Formulary

A positive attitude plus technique is the way to achieve success. It is important to have a good attitude, negativity can really cause difficulty. However, all the positive inner messages in the world alone may not be the solution because there has to be an objective component at wok too. If a person is not yet knowledgeable of the way to accomplish something, that is a big problem. Therefore, one must look at the "how" something can be achieved. If a leg falls or a body loses its balance a successful transfer will not happen. On the flip side, once a person can think through a scenario and continue to perfect it by practicing, it will become easier. Attitude + technique = a formulary for success.

Networking in Hershey

I was never a fan of attendant care because I believed if muscles aren't used they'll atrophy. What if they suddenly disappear? It's such a scary proposition but I will exercise as much as possible now, and after, so I can manage to at least do what I did- I will have to because it will be a necessity. Mind over matter will be an important part of this so I figure networking/marketing will be a positive and productive activity to occupy my mind. When I arrive the night before I'll be a mailman and put information under doors at the hospital.

Operation Infobility

What an interesting turn my life took! What better place to infuse my disability program then at Hershey Medical Center and rehabilitation Center! Helping someone else and working together always makes results more effective and efficient. Furthermore, hospitals & colleges are more receptive to those who've actually been there. So now that's exactly what I'm doing and this will be a successful route. I can't do a thing about my medical condition but I can network and share ways to help others who have disabilities. I can't wait to see where that leads- maybe I will reserve a table at the Abilities Expo; finally I'll make a difference.

Collaboration

I always believe that helping another helps oneself. Once again I tried to connect with someone and I'm going to be pleasantly surprised. Her beautiful website hardly gets shared and my biz cards are all over Lancaster and beyond but show a horrible simple website. Now we will have a very comprehensive informative that will cover so many facets of the subject- vocational, financial, individual, presentations, and a do-it-yourself disability manuscript for anyone and everyone. I am extremely excited so who would have known that a huge medical problem resulted in the birth of my dream disability awareness business.