Extras ~~~ "I'm at risk for Huntington's..."

I'm at a point of catching up again.

It's October 2013. This year has just zoomed by. I can't get over it.

I think I'll work backwards here. I probably can remember better (if anything) this way.

Most recently involves my little Grand Nephew Mason. For the past six weeks he's been in and out of the hospital with complications from a brain tumor. He was admitted on the 29th of August (I think). The tumor was removed successfully and Mason did very well through it.

Out of surgery and a smile for Daddy. My heart broke when I saw this picture. His little arms in restraints to keep him from pulling at the cords and catheter. (Catheter is draining fluid from his brain)

No more bandages! Another smile for the camera but I think he's more relieved to be able to sit up! Catheter and restraints are gone! God was watching over this boy. He will be home by September 5th.











He did very well until September 10th. The fluid wasn't draining properly so back into the hospital he went. It was a short stay as he was home by the next day. He's so adorable, isn't he?

So, he was so happy to be home again. Honestly, I don't think he has let any of this get to him. Randy (Grandpa) says he such a happy little boy even through all of this.

Then, on October 5th, he started having seizures. Back into the hospital again. This was over night. He was put on meds for the seizures and they sent him home.

He had his hair evened out after this hospital visit. His right side had been shaved but not the left so Kelsey and Jeff finally had it evened out.

 Yesterday, he had to go back to the hospital. Fluid was leaking around an old incision. After all the tests the doctors decided to remove the shunt from the outside of his head and put in inside. Thinking this would be a quick fix and back home again, Kelsey posted on FB saying "three times in the hospital in six weeks" was too much and asked for prayers.

This morning on FB Kelsey wrote:

"So we didn't get the great news we were hoping for this morning. The spinal fluid in Mason's brain around the shunt is infected. This means that they are going to have to pull all of the hardware out of his brain they have put in the past few weeks in order for the infection to completely go away. So he will have surgery this afternoon to have the shunt pulled out. He will be in the hospital for the next two weeks or so on antibiotics to fight the infection, and once it is gone, he will have surgery again to put the shunt back into his brain. This is all very frustrating and hard to understand how things keep going wrong no matter how careful everyone is. However, despite everything, Mason has been very happy and basically his normal self all day. Please keep the prayers coming."

So, prayers have been said again and I ask anyone, who might read this, please keep little Mason in your prayers. Poor baby. He really is a happy little fellow. No matter what, I know God has watched over him through all of this and He is with him still.

Florida Family

On October 10, 2013, two days before her Grandpa's 64th birthday, Eleanora Antonia Abella was born. Isn't she beautiful?
















                                 Grandpa Shelby and Eleanora.

                          Oh my goodness, she's so precious!


                                                       





Auntie Lee and Big Sister Evie with Eleanora.















                                                In Shelby's arms.













So sweet! Not sure who's holding her here.









Grandma Paula, Aunt Lee, Evie and Eleanora. I've been wondering what they will call her. I mean, Evie is Evelyn. I'm thinking Eleanora might be Ela (or Ella). I'll just have to wait and see.








Mama, looking so lovely and happy. Evie and her little sister. I love this photo.

No pics of Papa yet. I'm sure they'll be up soon.













Then Aunt Catie visited.
           



   
           

My Friends
September 29, 2013, Debbie and Jeff came up for a quick visit. They drove up that morning and were leaving the next morning. They squeezed in a long visit with Jeff's mom and sister, Suzie and her husband Kyle. Then they came and got me and we went to visit Mark and his friend Heather.

Debbie and Jeff are seriously looking for a house up this way. Preble county maybe where it's a bit more spacious. But, they're having a horrible time trying to sell their house. It's all a waiting game right now.

I took some pictures but my camera was fooled by the light and most are blurry. Debbie will hate her photos as she looks like she's been drugged. No, she wasn't, but it had been a long day.

Above: Not too bad of Debbie. She's trying to talk while the picture was being taken. A good one of Jeff  here. Handsome as ever.

Just a good picture.













Mark and Heather ~ Sweet.

















Old man Marty.

Satch starting to show his age.

Debbie and me acting silly.










                                              Below is a pretty good picture of us both.

Florida Family August 4, 2013

Shelby, Anna, Evie and Lee made the yearly trip up again. When they arrive, they try to cram several things into one weekend. For instance, this year they started arriving on July 31st and/or August 1st. Since Shelby is self-employed he usually stays about ten days to two weeks. The girls usually have to go back by after two or three days.

This trip it was Lee who had to return early. I never did find out when Anna left. I think it was the day after Lee but Shelby stayed on. He not only visited with us he made a trip to visit other family and of course the friends he's known all his adult life in Yellow Springs.

The August (fourth) day turned out to be beautiful with the sun shining, a breeze blowing and the temps in the low seventies. We couldn't have picked a more perfect day!

Shelby

                     Anna Lee and Shelby

Lee Anne







Below, Evie just up from a nap.

But she was happy about the pool!







                         Lisa and Mason


                                 




Randy and Mason

                                                 Shelby and Barbara June

Diana and Randy






                                         Shirley  

Diana                      

 Barbara ~ Shirley ~ Shelby

Kelsey and Mason (this is so sweet)

                            Beautiful Jenny

Tom and Darrin














Now

I am using my calendar to work backwards. Everything I have written or posted here is the most major events of this year. I'm sure I'm missing something. Still ~

I have gone through two family doctors this year. I stopped going to see my original family doctor for one specific reason. I was in her office in 2012 when an ambulance was called to come and get me. When I went to see her after I got out of therapy I sincerely believe she forgot that I was in the hospital. I was blown away by the fact that she had no records of treatment, prognosis or medications.

I stayed with her just a short time before I went to a clinic doctor. I stayed with him until just this past September. The reason I left him is twofold. First, people who work in a clinic are demeaning, condescending and uncaring. My doctor was okay but how can one work in this atmosphere and not see what is going on.

Second, he sent me to a Pain clinic. Again, the people that work here are as described above but so much worse.

The clientele was - - - I hate talking about this. I sound judgmental.

The first person I spoke to was a woman.  Actually I saw her before I spoke to her. I stood in line to sign in (yes, in line). I was reading some of the signs hanging on the wall next to me. "Payment is due before before you can be seen." Okay. Not a problem. I hadn't a clue I had to give a urine sample. The next sign went something like this:

You will be asked for your sample-If you can not give a sample you will have to wait 20 minutes-At that time you will be asked to give another sample-If you can not give a sample your appointment will be cancelled.

Remember, a patient has already paid for their visit and NO money is not refunded if the appointment is cancelled.

I was slightly appalled but okay.

While I stood in line I saw a lady moving around, talking to anyone who would listen. She talked to the guy who called the patients a couple of times and several of the patients in the waiting room.

When I got to the window the woman at the counter hardly looked at me. I told her politely that when I called for the appointment no one told me about having to pay up front or about the sample. "It's how we do things here." She said without looking at me. I told her I've never gone into a doctor's office and had to pay for my appointment before my appointment. "It's just how we do things here." I paid for my appointment.

I moved my wheelchair as out of the way as I could since there was little room to move in the waiting area. I had forms to fill out. I bent over a chair to do so when a man came out of the back. He obviously had seen a buddy across the room and yelled, "Yeah, I just got out of jail and need my stuff!" He was standing over top of me. I couldn't help it, I quietly began to cry. The man continued to talk to his friend until I finished the paperwork. I returned it to the woman behind the counter then I just tried to stay out of the way. I waited and watched. Patients were called back but would come back out within about ten minutes.

The lady that kept talking to people spoke to me. She apparently couldn't give a sample both times. She was hanging around in case they could squeeze her in. It all became clear finally. She had to give a sample to get her drugs. No sample, no drugs.

I wanted to leave but I was here, I'd tough it out. I waited and waited. My appointment time of course had come and gone. An hour had passed. All the waiting and my morning meds were dictating it was time to go to the bathroom. I told the woman behind the counter; she just looked at me. I waited as long as I could but I had to go. I hurried to the bathroom and thank God I was able to get my wheelchair in with little problem.

I just rolled out of the bathroom when my name was called! I couldn't believe it. I told him I had just gone. I told him I told the lady behind the counter too! No matter. I had to wait twenty minutes. I was so embarrassed. I didn't think there would be a problem though. Taking Lasix in the morning moved things along properly.

Forty minutes later my name was called again. I produced a sample and was told to go back to the waiting room. What? I had to wait out there for my actual appointment!

I waited an hour and a half before I was called back to my appointment. I was treated to "how things work here" by an intern. Basically it was if we give you drugs today you'll get them for ten days and you'll have to come back. What they aren't saying, 'we don't trust you so if you take too many or are just selling the drugs we'll know it when you come back'.

I was near tears again at this point. Two doctors actually came in after this. Two! They were so excited to be talking to someone who had Huntington's Disease! I looked at them confused and promptly told them "I'm at risk for Huntington's but I don't have Huntington's". Someone obviously looked at the paperwork wrong.

They blinked.

After that I was nobody to them and treated as though I was wasting their time. I can't talk about this experience or even write about it without feeling ashamed and small. I left the clinic in tears and sat on the sidewalk waiting for my bus. Of all the days we had this year that were beautiful, today was hot and humid.

What I actually wrote about this clinic was difficult. I can't write about all of it nor can (should) I say what it looked like. It would sound judgmental and that's not what I want to convey. Simply put, when one is not used to something like this, it can be demeaning. Needless to say, I will never set foot in a pain clinic ever again AND I left my second family doctor.

I am happy to say that I am now with a (so far) pretty good doctor. He's helped me quite in bit and I've only seen him twice. He has been the only doctor (in two years) who has fully explained about the pneumonia shot to me. I am not allowed to take the flu shot as I am allergic to eggs. It has been pounded into me about NOT taking it so when the pneumonia shot came out I was leery.

I took it and lived to tell about it!

I did tell him about the pain clinic (story) and left nothing out and cried while I told it. Even writing this now, tears push out and I feel the immense shame of being in that clinic.

Before I left that appointment the nurse has told me that there is a flu shot for people who are allergic to eggs. She ordered it for me. Actually, she called me yesterday (the 21st of October) and told me it was in. It seems I'm getting a flu shot this year.

Other Things

Once out of the hospital, Jeri has been so helpful to me this year. She has taken me to most of my doctor appointments. She has taken me to the grocery. Some of these trips have included Eric. My sister and I have become close again and I am intensely aware of how much I've missed her.

Even though it is just October I have to state that it has been a year of learning to adapt. I have gotten used to my wheelchair but still insist that in about two (or less) years I will be walking whether I will still need it or not.

My arthritic knees, hip and ankles aren't the only thing that keeps me from standing. My feet have their own problems. The fact remains, I was walking before I went into the hospital, I will walk again.

A realization: Talking to Becky the other day I was told that I had a heart cath while I was in the hospital. Nope, don't remember it at all. Of course it happened while I was still on the vent. They found nothing wrong with my heart (aside from the a-fib). No blockage of any kind!

This realization only makes me more curious as to what really happened to me. No one seems to know why I couldn't get off the vent. I keep saying I'm going to call the Valley and get my files. The only reason I haven't done it yet is I'm pretty sure they'll charge me for them.

I see Dr. Lynch (my heart doc) in November. I will talk to him at length about what is/what isn't in my file.

I'm about as caught up as I can get. I will be diligent at posting regularly from now on.








       




                                     

Penny

Penny Cooper is my best friend. I've known her for twenty-five years and we were best friends from day one.

On March 25, 2013, Penny called me to tell me she had stage four cervical cancer.

In the beginning, I wasn't at all sure she would make it through the realization. The news knocked her into a world of unbelief and justified self-pity. I was shocked for her and for a quick moment phased in and out of my own self-pity. Why her?

While absorbing this devastating news, Penny began taking medication for pain. And although it helped, she shut down mentally. She wouldn't move, she let everyone do for her. Each time I talked to her on the phone she was always in bed. After talking to Emily I learned that a hospital bed had been installed along with a wheelchair and bathroom aides.

I was unclear as to why, all of a sudden, these items were installed. I was terrified Penny had just given up! I not only called her every day, I began sending her cards of encouragement.

Then, because she wasn't moving, clots developed in her legs and she was taken to the hospital. John called me about this.

The doctors were able to treat the clots safely but she had to stay in the hospital while doing so. Her oncologist decided to start chemo while she was there. John called and told me that they thought it best so he given up on trying to get into the cancer center in Indiana.

Penny had a rough go of it in the beginning. All the drugs! She wasn't used to it. The most she had ever taken in her life was Tylenol or Ibuprofen or an antibiotic when she was so sick a couple of times. If she wasn't sleeping 24/7 she hallucinated. Chemo irritated her mouth and throat to a point of not being able to talk properly much less talk to me on the phone. I wasn't sure she knew who I was half the time.

She was in such bad shape with all this 'new' I was positive she was't going to make it.

But then, things started to level off for her. Thank God! She still couldn't talk right but she could talk. I continued to call every day whether we talked or not.

April 10, 2013, I had to go to MVH for a series of x-rays and mammogram. Jeri drove me that day. She was so sweet about everything I had to do and still go with me to visit with Penny. I was so desperate to see Penny I seriously considered not doing the x-rays.



This was about as big a smile Penny could muster. She was so weak at this point.
   

   

Yet, she still had a sense of humor! She allowed me to put this on Facebook.

Jeri took this picture. Later, when Penny saw this picture she said it was okay to put it on Facebook also. She hated it though. No make-up and her hair wasn't 'done'.










Penny did amazingly well during the summer. She was upbeat, positive and worked hard on getting strong again.

Here's where a lot of information drops off though. I don't know why but I can guess. Penny never called me but once or twice while she was doing chemo. If I called her at home she couldn't talk or if she could it was just a couple of minutes.

I continued to send her cards and always called her. I was, at this point, just leaving her messages. She never returned them. If I did get her I'd ask her if she got my message and she would say no or she got it and meant to call me back. After talking to her at the end of July, she sounded incredibly happy!

The way she talked I started to believe she just might beat this thing. I know Penny well enough to believe she thought the same thing. I also realized this; she was spending precious time with her family. She may have been doing well but she understood her time on God's Earth would be short. Still, it seemed like she was going to beat the original diagnosis of six months to a year!

That was probably the last time she and I talked as long as we did. It was then I realized how short our conversations (when we did talk) had been. Once upon a time, Penny and I would talk the wires out of the phone. We could talk for hours.

If I have my dates correct, Penny became ill on August 7th or 8th. She called John home from work telling him 'something was wrong'. I didn't get a call until the 9th, a Friday. She had been admitted with a perforated bowel.

No attempt to repair it was made. I was told the doctors "couldn't" repair it. Okay, I'm not stupid. It can be repaired. I know how serious the condition is and that it can be fatal if not treated. I can only guess that the decision was made to 'not' fix it was because the cancer had spread.

She was admitted to Hospice on Saturday the 10th. (I think)

I wasn't able to go see Penny that weekend. I made it Monday, August 12th and stayed for about three hours. Emily was there, John was at work. Penny was semi-alert. I can only imagine what type of drugs they had her on. Still, we talked a little. Mostly I held her hand and she slept. And I prayed over her.

Because of doctor appointments and therapy, I didn't get back to see her until 16th, a Friday. She roused enough to give me a faint smile. That was all. Her daughter handed me a gift bag; a birthday present from Penny. A sweet gesture, but I doubt my friend had much to do with it. Not the way she was today.

That weekend and Monday, I tried to get a dependable ride without having to ride the handicap bus. My sister Jeri wanted to go with me to visit but she ended up with a severe migraine. A friend said she would pick me up but couldn't do it until Tuesday. So I decided to wait until then.

I called Hospice every day I couldn't be there. Every day. Emily answered the room phone once while Penny was there. I tried to call the cell phone number that was Penny's but now being used by Emily. I usually had to leave a message but Emily did answer it a few times.

My friend Dawn N. confirmed that we would be going to visit Penny late afternoon of the 20th. I was so relieved I would be able to see Penny at least one more time. I knew she had to be failing.

That morning (of the 20th) I called the cell phone and had to leave a message. I called the room and got no answer. I called Penny's home number in case they hadn't left yet. No answer. I finally called and asked for the nurses station in Penny's area. I asked how Penny was doing and was told, "she died in the early morning hours".

I wept. My friend was gone.

I waited for a phone call from either of them. I finally spoke to John briefly the evening of the 21st. He said Emily was supposed to have called me.

Three days later I called and spoke briefly to John again. Then later, Emily called but neither of them let me know what the arrangements were. This is how I found out:

COOPER, Penny L.
Age 62, of Brookville, passed away Tuesday, August 20, 2013 at Hospice of Dayton, following a brief illness. She was a 1969 graduate of Northmont High School as Penny Carr. She was a very creative woman. She was the owner of Froggy’s Workshop, where she made children’s jewelry. She was  also employed by Hobby Lobby. Penny is survived by her husband of 42 years, John Cooper; daughter, Emily Kinzig & husband Tim; grandchildren, Jackson, Audrey & Ben; sister, Suzanne Collins & husband Ross; nephew, Nick Collins & wife Amy & their daughters, Olivia & Mya; niece Melanie Collins; & last but not least, by her special Chihuahua, Eddie. Funeral services will be held 4 PM Sun. Aug. 25 at the GILBERT-FELLERS FUNERAL HOME, 950 ALBERT RD., BROOKVILLE, with Pastor Dave Britton officiating. Visitation will be held 2-4 PM Sunday. Graveside services will be held 10 AM Mon. Aug. 26 at Dayton Memorial Park Cemetery on N. Dixie Drive, south of Vandalia. If desired, the family suggests donations to Hospice of Dayton. E-mail condolences may be sent by going online to www.gilbert-fellers.com

I had a rough couple of days before the viewing. I was so sad.

Jeri and Eric were going to take me to the viewing on Sunday. Jeri wanted to go because she was so pleased that Penny was one of many friends who visited me while I was so sick last year. When Sunday arrived, I didn't do much but think about Penny until it was time to get ready.

Jeri ended up with another serious migraine. My poor sister has dealt with migraines ever since she was a young woman. Sometimes, they come at her so fiercely and so often, her meds just don't work.

Eric, bless him, arrived to take me to the funeral home. He was going to stay with me but I told him to go home and make sure Jeri was okay. He could pick me up at 4:30. He helped me into the funeral home as my cell phone started to ring. Eric left and just as I was pulling my cell out of my purse, Emily came out of a small room laughing; she had been trying to call me.

As quickly as she appeared, she disappeared. I rolled into the main room and was surprised at all the people there. I sat in the back because I wanted to see Dawn N. come in. The line formed to greet the family was so long. I had to stop and consider all the people Penny and John knew from Brookville. I'm pretty sure John's friends from work were there. People Penny knew from Click Camera, Bath and Body and the office job I can never remember the name of. Her friend from that place, Sue, had called me several times before Penny passed. I was also looking for her.

Dawn came in and sat next to me. We were both hoping the line would shorten but it never did. We finally decided to take our place and waited. The line went quickly. At this point it finally occurred to me that Suzanne, Penny's sister was in the reception line too. I was so ashamed of myself for not trying to get in touch with her more. And of course Suzanne was the first one to greet me. She remembered me (surprisingly), embraced me and said, "I'm so sorry for you Shirley, I know you two were friends for a long time". I couldn't say anything after that. I just returned the hug and moved on down the line. Suzanne's daughter Mel and husband Ross introduced themselves to me but they didn't have to. I knew all about them.

John was next and he gave me a hug then told me there was a picture of Penny and me he wanted me to take home. I knew which one it was. I thanked him. Emily walked with me to the casket and I was a bit shocked. The wig was on her and it did look pretty but there was no make-up! I mean the funeral home tried to cover up some things (I won't go into all of that here) but there was no eye shadow, no blush, no lipstick! I was shocked and looked at Emily for explanation and she said, "we did the best we could".

Okay. I didn't say anything and left it at that. But I didn't understand it. I had mentally prepared myself for what she would look like but not this. I just turned and moved back to my seat. Dawn N. was right behind me.

We sat through the service, which wasn't at all bad then it was time for final good-byes. I wasn't going to the casket again. I stopped and spoke a few words to John then Emily and lastly Suzanne. Then I went outside to wait for Eric.

My friend was gone.

The next few days were emotional.

Since the funeral I have tried to get in touch with John and Emily. I left a message for John on his home answering machine. Emily tried to call on my land line, left a message but didn't leave a number. I haven't heard from her since.

It's taken me awhile to write all of this. When I began, each word brought on the tears so it's taken me a bit to write this small memory of my friend's illness. Oddly, John did call me just recently (about a week ago). I was shocked! But it was good to talk to him. He wanted to see how I was doing. He seemed to be doing well. He broke down once but collected himself pretty quick.

>>>>>A silly poem for a silly friend by a silly friend:

                           Ode to Pen

                            Pen is my friend

                            The end.  (bow and wait for applause)

Early days of Click Camera. 1988

This was around Christmas of 1989. The guys rented tuxes to wear for our store Christmas picture. By the end of the day all of us girls had tried on the tux jackets.

I know there are more pictures of Penny or Penny and me but I just can't put my hands on them right now.









Most of my pics of Penny are tucked into a scrapbook. I don't have penny's voice on audio anywhere. I have a very drugged message on the answering machine but I'm going to delete it. She would hate knowing I saved it.

Penny, you have kept my secrets for twenty-five years and taken them with you.

I still have your secrets. All of them are in a safe place.

I will always remember you. I will always miss you.

Dayton Rehabilitation Institute

Before I continue with my next phase, please understand that I had no clue what would happen in rehabilitation for someone who has lost all muscle mass. Believe me, it's not like a movie where someone spends three or four months immobilized then released. "It's a miracle, they can walk!" Well, maybe not that bad but a person really has no clue until they go through it.

I hadn't walked in over two months. A nurse or aide told me that for every day one spends immobile, one will spend three days getting back what was lost in that one day. During therapy, I would also understand that not only did I lose muscle mass but arthritis took over, especially in my left knee.

---------------------------------------------------------------------------------------------------------

I had a long road ahead. It is November, 2012. Actually, it is the last day of October.

When I transported to DRI I was shown to a lovely room over looking the Great Miami River. I was put into my bed and told, "we won't have you working today, but tomorrow, you will begin and fully clothed"

Okay! But fully clothed was not an option. I had no clothing with me except what was taken off of me two months ago. I don't want to think what it must look/smell like.

I decide to let the nurses and aides worry about it the next morning. I was alone. I felt a little afraid. Okay, a lot afraid. It probably wasn't a good thing to let me 'not' get busy. Some of the major drugs had been omitted and I was no loner hallucinating. I was much more aware of my fear and my loneliness. Some of my thoughts were about what was next for me. I had barely been at DRI for an hour and I was fearing the future.

No one explains to me what to expect in rehab. No one says get up and stay up. No one says do this or do that. I haven't a real clue as to what is expected of me. It will get even more confusing too.

I am quite comfortable. The bed seems to be made for me (if one can say this about a hospital bed), all I have to do is push a button to call a nurse or aide and someone sees to my every need.

I am awake early. Five o'clock. I turn the television on and watch the news. By six o'clock, I am dozing again but am awakened. "Good morning!" V. from physical therapy has introduced herself and asks if I would like a bath.

Yes! A bath sounds wonderful but I'm not strong enough to use the shower. She prepares a basin of warm soapy water, brings towels and wash cloths, toothbrush and toothpaste, deodorant and lotion. It's all set out for me and I'm so excited that I need help sitting up.

It feels wonderful to bathe myself. I explain to her that I have no clothing. She finds clean pajama pants and tells me to wear them with a clean hospital gown.

I feel clean! My teeth feel clean! I am feeling wonderfully human again! Therapy is great!

An hour later, V. wakes me from a sound sleep. "Time to go!"

I'm not sure what I thought except that, that bath wore me out. I sat up and saw she had a wheel chair waiting for me. "Can you transfer?" She asked.

I had to stop and think, could I? "Help me." I said and she did.

Transferring from one sitting position to another wasn't difficult once I caught on how to do it properly. I learned though and in doing so it was much like learning to walk. One will fall while learning, it's inevitable.

Therapy is not glamorous at all. Just like a baby there are certain things ones legs and feet have to get used to. Sitting in a wheel chair and exercising ones feet (heel, hold, toe, hold) seems silly and unimportant. Just as putting a ball between ones knees and squeezing back and forth without dropping the ball does. Tossing said ball back and forth to other patients was fun but why?

Attitude dripped off of me the first couple of days and then it was Saturday. No therapy today.

I was learning to do everything all over again. Going to the bathroom always required someone with me. The aide or nurse would make sure I transferred properly then would let me have my privacy. When I was done I would push a button and wait for someone to watch me transfer back to my chair. Today no one came right away so not wanting to wait I stood (holding the bar) pulled my pants up, turned, hopped and sat down in my chair.

I did it! Crying the whole time but I did it - and got yelled at by the nurse on duty for doing it alone. Someone had to at least be with me in case I fell. I took the scolding but was immensely pleased with myself at the same time.

My emotions seem to be on a high alert. The least little thing sets me off. I've always been emotional. Always. And have decided that I always will be but it seems all the drugs turned a switch on which has made me more emotional. It takes very little to make me cry.

When therapy started again, I went at it with a better mind set. Becky and Jeri had gone to my apartment to get my dirty clothes and Jeri took them home to wash them. Then she brought them to me at rehab. It felt so good to have clean clothes! Clean clothes! My own clothes! What a world of difference!

I caught something while there. No one really could tell what it was but it was some sort of rash. It started on my wrists and by the next day was all over my upper body. It didn't hurt or even itch but it was spreading fast. I got one good shot of steroid, a cortisone cream to put on twice a day and almost as quick as it appeared, it began to go away. Once it began drying it peeled like a burn of some kind. It never did bother me except that it was there.

During the next rehab, V. decided to put me on this machine. I don't know the name of it but this is what happens: You sit down. You are almost eye to eye with an attached table. V. straps you in (more than being strapped into a seat belt) and says "hold on".

Okay. Suddenly this machine begins to lift me up. I know my eyes are darting back and forth, to and fro because I see absolutely everything in front of me, to the sides and ceiling and floor! But I'm not falling, and the machine continues until I am standing completely upright. I can now put my arms on the table top.

I used this machine twice. This picture is the second time as I had Becky bring her camera to record me doing this amazing thing. See her in the mirror? The camera is also old and broke and not producing good pictures. This almost looks panoramic. You can't tell I'm standing as Becky didn't take a full body shot but the smile on V's face says a lot!

I am pleased too as you can see. And of course the second I saw this all I could see was my hair! It wasn't long after this that Ottie returned to give it another cut and shape.

You see the yellow "gown" I'm wearing over my clothes. I had to wear this every time I left my room because of the rash. Anyone visiting had to put one on. Although, it is getting better even at the time these pictures were taken.



While dealing with this rash, I was in my second week of rehab. The doctor on duty was considering when to send me home. I told him I felt that I still needed therapy and (lifting up my hospital gown to show my stomach and the "girls") told him "I didn't come in here with this (the rash), I won't go home with it." He agreed on both counts then told me to put my gown down.

I wasn't satisfied with what I was doing in therapy. I was ready for more and they gave it to me. Bicycling (feet and hand movements) was great. I loved doing the rickshaw. So much I wished I could have one at home. The rickshaw showed me just how out of shape I was.

I was pressing ten pounds, five pounds each side. It was so easy I requested an extra five for a total of ten pounds on each side. Where I could press to the count of 150 with just ten pounds, I barely made to 25 with the added ten pounds! It made a huge difference so I went back to five pounds each side. Still it was an exercise that felt good to do.

For three days in a row I was rolled to the end of the platform parallel bars, stood and tried to take a step. I couldn't. The pain was too terrible.

Still, it was important to build that muscle so I would stand in between those bars and do my best to step. And I did. My first step was done almost bent in half, hanging on to the bars for dear life. The second time I stood more erect, and took two steps. Taking these steps go like this: left foot flat and slide forward, right foot on tip toe and look at V. and tell her I can't. She shakes her head and says "yes you can. Start with right foot, stand on tip toe, hop forward bringing left foot as you go." I did it! Two steps but I did it!

I was determined to get stronger. Medicare was only going to pay for so much and I would soon be kicked out of here. I began taking responsibility for doing some things on my own.

Saturday and Sundays were therapy free days-usually. When I was left on my own, I would roll down to the small therapy room and do the basic exercises myself. I just went further than what the therapists were letting me go. If they let me do 20 or 30, I'd do 40 or 50. When I returned to my room, if my bed wasn't made I asked the nurse to give me everything I needed so I could make it.

This was really good therapy for my arms. The first time I couldn't get the fitted sheet over the mattress corners. I tried and tried. I had the nurse help me but watched how she did it. The next time I did it on my own. I made my own bed and cleaned and straightened my room. I did everything but sweep.

I was now rolling up and down the halls! I could get my own coffee in the morning or my own pop or water in the afternoon. I learned to grab a newspaper early in the mornings before they were all gone.

While learning to be independent, I was also learning how to dress myself. In the beginning it was tough getting a shirt on. (No bra for awhile) But I began to manage. My left arm was the worst (still is) but I learned to slip my shirt onto that arm first then use my good arm. Underwear and jeans were another thing all together.

I could get them over my feet and up to my knees (while sitting), then stand, letting my legs rest against the bed, and pull them up as far as I could before the legs gave out. The fun part was lying in bed, rolling from side to side and pulling my pants on with each roll. Roll to the right, pull up the left, roll to the left pull up the right. Repeat until I was completely satisfied my pants were on and I felt properly dressed.

I pushed myself to a point of exhaustion and K. my favorite nurse, put a stop to it on a Friday. I was told to sleep. I did almost eighteen hours.

I enjoyed everyone that helped me at DRI except one aide. I can only say that she took an immediate dislike to me. I did every thing wrong and when I had to ask for help she belittled me for asking. Each time I buzzed for help she would walk into the room, open her mouth and negativity spewed out.

It had been pounded into me to ask that there be an aide or nurse with me when I get up and go to the bathroom. I buzzed one night for this side and waited and waited and waited. I finally got up, and went into the bathroom on my own. I was just about to transfer back to my wheel chair, she walks in and literally begins yelling at me for not waiting for her!

I lost it. I wept with fierce frustration and yelled at her to get away from me. Realizing she had pushed me too far, she came at me and I just about went ballistic. It brought the aides and a nurse, someone made her leave and the aide and nurse helped me into my chair. I was wheeled back to my bed and helped in. I was crying the whole time.

K. came in with a shot and while she was doing this, THAT nurse came in and tried to apologize. I yelled at her "your forgiven, now get out of my room!"

My poor neighbors, sincerely.

I was not allowed to do therapy the next day. I was being discussed, I was sure of it but I wasn't worried. If I was worried about anything it was how I reacted. My high level of emotions got the better of me combined with the fact that I just couldn't take any more from that person.

I was right, I was being discussed. One of the aides opened up enough to tell me that that aide was like that with everyone. The Director of Nursing came and talked to me about the incident and had me sign a complaint form. She asked me a couple of questions, I answered. I told her honestly that I just couldn't take her mean-mindedness. I also told her it was as if she was resentful in having to care for me and wondered aloud if she was like that with everyone.

I would leave this place very soon. I was as strong as I could be and was feeling more independent.

I became over confident a few times. I would begin to transfer from my wheelchair to the bed and immediately knew I did something wrong. I was slipping. I tried to correct my position but it was too late. I had enough time to hit the buzzer, held on for dear life and when they answered I yelled "I'm falling!" but by the time I said it, I was on the floor. I guess it says something for my strength that I could hold myself up long enough to simply slip to the floor instead of crashing. I never hurt myself, not once, my pride maybe but not physically.

For some odd reason, therapy was required to witness everything a patient might accomplish. I was okay with it up until I took a shower on my own. I got tired of waiting for therapy to come around and wake me up one morning (something they hadn't had to do in two weeks) and decided to get up and take a shower.

Of course while I was rinsing off, V. comes in and asks why I didn't wait for her. I really didn't have a good answer so I said, "I needed a shower, I can do it alone now, doesn't that count for something?"

"I have to write it down!" She said.

Unfortunately, I said, "So, write it down."

She stormed out of the bathroom and I didn't see her during therapy that day. Seriously, what are they going to do, kick me out? I'm leaving in few days.

V. took this offense pretty hard. During the last few days she barely spoke to me during my workouts. I also think she was miffed because I went looking for things to do during other therapy sessions. But, I also know that doing this on my own got back to V's boss and my doctor. They approved of my independence without saying a word against me or her. I would be going home two days before Thanksgiving.

The day before I would go home was wildly spent doing things (it felt like) they had missed having me do. I was taken to a kitchen and was watched as I made a peanut butter and jelly sandwich. I was taken to a regular bathroom and told to transfer to the shower bench then back to my wheelchair. I was never shown how to transfer from wheelchair to car.

When Tuesday came I was told I'd be ready to go home by one or so. Jeri and Becky were there waiting with me. They were both there so therapy could show/help me transfer from the wheelchair to Becky's van or Jeri's car. This day was a disaster.

We waited all day long, literally. It was awful. Not for me, for Jeri and Becky! There was nothing to do but wait. I was ready. K. kept checking on me and would tell me they had so many going home that the doctor was way behind. (the doctor had to see each patient before they left).

He did not make it to my room until late afternoon. It was starting to get dark. I barely heard anything he said. I just took the paperwork and prescriptions said good-bye and left the room. It was so chaotic! When we got outside K. and the director of therapy was there and all he did was watch me NOT be able to get into Becky's van. I had to roll over to Jeri's car and get in. All the while the director just watching. I don't know, maybe that's what he gets paid to do!

I made the mistake of putting on an old pair of jeans that morning. I had lost a lot of weight. The jeans were already stretched out and pinned in the back. When I stood to transfer to Jeri's car, my pants fell to the ground! Jeri says, "Shirley, your pants fell!" Bless her heart. She helped me get them back up, I got into the car and she loaded the wheelchair. The director just watching, maybe he wanted to make sure Jeri could load it.

We were finally on our way. We had to go to a pharmacy to fill the prescriptions. It would take almost two hours. I needed them. I told Jeri we could go on to the apartment then come back but I didn't mind sitting here and waiting either. I let her decide. We sat and waited.

They didn't have two of the prescriptions but I didn't care. I wanted to go home. I knew Micah and Mr. Mister were home and I couldn't wait to see them.

Jeri, God love her, was so helpful and patient that day. I tried to apologize but she blew me off. When we finally got into my apartment it was almost eight o'clock p.m. She sees Mr. Mister then Micah. I tell her Micah's not very friendly with strangers and might bite. The whole time I'm telling her this, she's opening his cage, puts her hand in and he steps right onto it! Oh well, the entire day hadn't gone the way I expected, why would this.

I am home, I am home, I am home. Thank you Father, thank you!

Kindred Hospital

When I arrived at Kindred the first person I met was my nurse. Casey. While she and the aides were settling me in my room, she leaned over me and introduced herself. She smiled and her teeth seemed to glow.

I know I was on some heavy duty drugs but I also know what I saw. During my stay at Kindred, Casey would be my nurse about three times. Each time, especially if it was low light or dark, I could tell that what ever she was doing to whiten her teeth, she was probably over doing.

Aside from that Casey was a good nurse as were most of the nurses that took care of me. It was also the first time (that I remember) having a male nurse. Two of them.

Kindred was supposed to be a  first step toward rehabilitation. I was anxious to begin.

As with the other posts, I’m sure some of my memories are confused. At the time, I am unaware just how confused they will be.

The first day not much happens. I am still being medicated with various drugs. It isn't until now that I realize I hadn't given my heart much thought. I lie still to listen to my body. The heartbeat is a bit slower (not much) but it doesn't seem to be shaking my body.

I place my hand over my heart and think. Some of it finally comes to me. I am being given medication to help my heart. It is what causes my blood pressure to drop rather low. I am constantly asked if I am light headed or dizzy. Oddly, I am neither.

Becky comes to visit and decorates the bathroom door with a large, plastic covering that has a witch on it. It is my one and only Halloween decoration. She knows if I was home, my apartment would be in full bloom with Autumn and Halloween.

Randy comes to visit and brings a bouquet of Autumn flowers. The three of us discuss the issue of my apartment. Before I went to the hospital, I had already received my letter of appointment for reassessment. Becky had explained to the office my situation and the person who was responsible for this was very understanding, however, I needed to be reassessed. I was given extra time at the time of Becky’s conversation with Anne (the office person). My first appointment, if I remember should have been about the second week of October.

Randy said he would contact Anne and Becky said she would help him get my paperwork. This would be my biggest worry for awhile.

Kindred will not be a positive experience for me. Everyone has been very attentive but they are truly not prepared for me. Casey said it herself, "I'm not used to my patients talking". Nor are they used to someone with very low blood pressure be able to tell them truthfully, 'No, I'm not dizzy".

Of course my mind is still a bit foggy with all the drugs and I truly don't realize any of the above until much later. All I know is I'm anxious to get out of bed and begin walking again.

My drugs cause some serious dreams/hallucinations. I no longer dream of giant trees and keys I need to find. I do however dream. Becky will tell you that I hallucinate.

I am unable to get fully asleep one night. I'm uncomfortable and can barely move my body to get comfortable. I can move my head and when I look to my right I can see outside a window.

I see a large bird cage and inside are two Macaws. It is cold outside and I become concerned about them being out there until I see that someone has put a knitted Owl outfit on one of the Macaws. It has snuggled up to the larger Macaw to keep them both warm. I am extremely worried about the birds and wake up several times that night to check on them but it is so dark I can just barely make out the cage.

The next morning, it is still cold but the sun is shining. I look to see if the Macaws are okay but the cage is gone. I do see two women outside however and see that they are working with the birds. They suddenly disappear and I can hear them in the hall outside my room. They are taking the Macaws around to see the patients. Yet, they never come to my room.

I tell Becky about this later when she comes to visit. She patronizes me in a way most would when they know one is taking some strong drugs.

It isn't until I am home that I realize I dreamt or hallucinated what I saw. It will become a funny story told by Becky with much enthusiasm even though to this day I would swear it was all real.

The Physical Therapy staff is okay but they really don't seem to realize (even though I'm still dopey) that I'm ready to do what ever it takes to get back on my feet. I'm tired of being horizontal and tired of the hospital bed.

I do fight to sit up. The first time I did this, the PT manager was in my room and I was complaining to her how I hated being in bed. She looked at me (still thinking about my low blood pressure I'm sure) and said, "okay, sit up".

I was, by golly, going to show her I could!  I scooted to the edge of the bed, grabbed the bed railing and struggled to a sitting position---then fell back with a dull 'flop'. My body was without muscle or bone, I was sure of it. I've never experienced anything like this before. A new born baby could have done better.

PT manager didn't laugh at me though. She told me she was surprised that I was able to do what I did. It was that statement that made me work harder. It doesn't take long. Although I must lean on the mattress, I can sit up for a bit. Long enough to eat!

I know I don't have the days correct but I do know that it was close to a weekend when I was told by the therapy staff that on Monday I would get out of bed and begin. Yay!

In the mean time Ottie Calvert has come to my rescue and will trip and style my chopped hair. Chopped hair indeed. As she works she sees that the girl who cut my knotted hair off came dangerously close to my scalp a couple of times.

Ottie was so careful of me. She brought two capes to drape over me so hair wouldn't get on the bed.

Starting to look much better.

All done and looking so much better. It feels better!                                                     

A blurry picture of Becky and me. By the way, the covering they have over their clothes are for their protection. Just in case.

I am eating solid food but nothing looks or tastes good. I barely eat at first but slowly get my appetite back.

Note that I am sitting up. My elbow pushing against the mattress seems to balance me.

My heart doctor, John Lynch visits regularly. He wants to do a procedure to get my heart back in normal rhythm. For this I will be whisked off to Kettering Hospital.

I'm terrified. They want to shock my heart. I will be put out with a small dose of a drug, they will shock me then I will wake up. I ask Jeri if she can go with me. She says of course but I can't tell her exactly what day or time.

As it turns out, it was immediately. I think the next day. The ambulance was on its way and I barely had time to call Jeri to tell her. She will not be able to be with me.

I remember being rolled into a room and they didn't waste any time that I can remember. I was out. When I woke, everyone around me was smiling. "Did it work?" I asked. Lynch smiled and nodded. "Perfectly!"

The ride back to Kindred was exceedingly painful. The procedure (I think) caused the neuropathy in my legs to act up. When I say act up, the pain made me scream. It was on the outer side of my left and right thigh. It was terrible.

When I was got back to my room I was given pain medicine immediately. Not long after, I started on a pill called Gabapentin. 300 mg three times a day. This will change dramatically after I get home.

I spent a lonely weekend but kept upbeat because I knew come Monday I would begin therapy. I looked forward to it. I endured that awful bed and the worried looks from the nurses and aides when I said I wanted to sit up. I waited - it was the longest weekend I've ever experienced.

Monday morning I waited. Had breakfast, watched as person after person walked by my room. Lunch time came and went. I was pretty much beside myself around two o'clock. I was sure I'd have been in therapy by now. I was constantly asking the nurses or aides to contact therapy and find out what's going on.

No one came. No one told me why.

Finally, around five o'clock, three staff members from PT show up. Their excuse/reason; my blood pressure was still very low. I let loose. I was so angry. "Why didn't you tell me this earlier? Why did you let me sit here all day, looking forward to getting out of this bed? Why let me think all weekend that I would finally begin therapy? Why?" I'm crying of course but I am furious.

I can tell by the looks on their faces that they had dreaded coming to talk to me in the first place. They try to get me to stop crying but I won't be comforted. I tell them to get out of my room and I'm not quiet about it.

I cry myself to sleep. When I wake, supper is on my tray. I don't want it. I don't want anything. I just want to get out of bed.

It is another long night at Kindred.

The next morning, I am still unhappy. I barely speak to anyone, even my nurses. They try to explain things to me but I don't care. I've heard it before.

Occupational Therapy does come to get me for some tests. I'm not allowed to walk or anything like that but I am out of bed! I am perplexed at the tests they're doing. They want to see me swallow. I'm trying to make sense of this as I have been eating solid foods for quite a few days now. I try to ask why but I'm pretty much ignored. They must have heard about my meltdown with PT.

I do their stupid tests and am taken back to my room and put back into my bed. That hour of tests just about did me in. But it felt so good to get out of bed.

I will note here how antiquated the equipment is. I don't know medical equipment but I can tell when something is extremely old or at best, second hand. This is the way is with much of the equipment at Kindred. Including the beds and chairs.

PT has become invisible. I ask my doctors what I'm still doing here. If this is step-down therapy, I was ready to step down. I was done with Kindred and I'm sure they wouldn't mind seeing me gone.

I will be on my way to Dayton Rehabilitation in a day or two. I can not wait.

Before I leave a manager of the PT staff comes to see me. She tries to explain what happened on Monday. I didn't want to hear it. I asked her the same questions I asked them. She gave me the same answer. My blood pressure. I asked, "then why am I going to Dayton Rehab to begin PT?"

She had no response to that.

I will not miss Kindred.