He ain’t Heavy, He’s my Brother (he is a little heavy for me to move him)

22 Mar

John

 

My brother and I were quite a pair. He with a mental handicap (I can’t say mentally retarded) and me losing my hair at 2 and it never growing back. We were born 13 months apart. We were pretty good buddies until around junior high years. His mental capability is around 9 years old so I never really knew anything was wrong until I  became older and he stayed the same. We went to the same school since Highland Park in Topeka had Special Ed. No integration at that time. As he grew older, his emotions changed and he moved to Parsons, KS to attend a new program that would teach him how to work, count money, clean buildings etc and live in a group home facility. I’m not quite sure how I felt about it. I know I felt guilty because a lot of our issues were between him and I and a lot of fighting, I mean really fighting with hitting and me running out of the house scared. His favorite story to tell about one of our fights was when I was in 6th grade. He called me some name and a punched him the head and broke my little finger. It was literally sticking straight out. Unfortunately my parents were away and my grandparents were staying with us. Being a grandparent now, I’m sure she wanted to be done with the both of us. For years, anytime we were all together, or he would meet one of my many husbands, that would be one of the first stories. When he was 21 he became a ward of the State of Missouri which had an outstanding system for the older mentally handicapped. He lived in group homes with round the clock care. He alway had his own room and worked many places.

John and I grew apart for several years because for some reason him being around me would just set him off. I felt badly about this, but also glad I didn’t have to be around him. Not a very nice sister for a while. I went through a phase where I would be embarrassed to be with him. Not a good sister. Remember that television show that had the Down Syndrome brother on it, and how loving they all were. Not all families with a mentally handicapped child or family member are like that. It can be very difficult and stressful. Thankfully some medications really helped his moods and once again we could be with each other.

John would obsess all the time about his birthday. He would start the day after his birthday on December 29 and tell you when his birthday was the next year the entire year and not to forget to send him a birthday present. Oh the trouble he would get in from all of us and he would be told over and over he couldn’t talk about his birthday until Dec. (will that date ever feel the same now?)

One thing I have thought about being with him these last couple of weeks is how alike we are as far as being social. He has many friends in Monet, MO. When he would meet you, he would always talk about the gas prices, when the time would change and the weather. He would also ask you your phone number and if you gave it to him he would call. He could memorize everyone’s phone number

My Mom and Dad lived near him many years when they moved to Missouri. It was always a treat for him to come and see them for the night. He never wanted to be away from home too long. Now most of you know that I am a slob, I won’t sugar coat that. John was a neat nik  and his bed was made, his shoes in place and don’t even touch anything in his room because he would know it. I wish I would have received a little of that neatness.

My sister Judy has been his guardian for several years and she only lives about 1 1/2 hours away from him. During the holidays we would all take turns picking John up and taking him home. Stopping for a gigantic fountain drink was always part of the trip and for some reason he and I would get into it over some silly thing, I can’t even remember what it was now, but he would apologize by saying “I’m sorry, I’m sorry, I’m sorry”. Now I want to repeat that a million times to him. Why couldn’t I  have had more patience with him in the short time I would be with him.

John loved jewelry, clothes, boots and hats. If you would show up with something on that he liked, you would either end up giving it to him or sending him one! When I arrived this trip he loved my fleece vest that I had embroidered mountains and La Veta. For several days in the hospital he made sure that he was going to get it. He will have it. He has on his watches, rings, bracelets now.

He has missed my Dad terribly since he passed away in 2009. The other night he told me needed to see Dad.  I know he will be seeing him and that Dad is waiting. Did you know there is a hymn that says something to the effect that “you may be disabled now, but when you reach heaven you will be whole again”. I need to find that.

Denny began sending him singing cards for maybe 5 years once a month with a $20 bill inside. Denny would play all the cards for me and be happy when some new ones would come out. When John received them he would call my Mom and play the card for her.

 

John has become very fragile over the years and has had hip replacement, a totally rebuilt femur, survived being septic a couple of times, and a couple of cracked and broken tail bones and pelvis. His pain tolerance is astronomical. Once he had a broken hip for a month before it was discovered. He would just say his hip hurt after he fell off of his bike. That’s another thing I don’t have is pain tolerance, as many of you know.

When I received the call from my sister Judy on March 8 that John was very sick with sepsis, UTI and pneumonia, I decided to fly up to Springfield, MO to spend time with them as he recovered, which he did. He was literally gone and they brought him back. That’s why he is my superman. So, the weekend of March 12, the hospitalist began talking about him going to rehab to learn how to walk better and get stronger. That Sunday I mentioned that he was in a lot of pain when they moved him around in the bed. He set up an Xray of the hip and a Catscan of his stomach.  His blood work was out of whack also. He also had a lung biopsy and was hallucinating and very confused like he had dementia. After the tests they discovered that he had cancer in his bones and it had eaten away one of the vertebrae, causing severe pain. Oh my God, this whole time he is such pain, he can’t really relay to us how bad it was. We talked again with the internist and he said that he should go to hospice and get on the comfort program and that he probably had a few weeks. Wow. A big shocker. On Monday the oncologist came in who was a very irritating person. He started in on us that we were jumping the gun and that he wanted to pinpoint where the cancer started and that he could give John 3 weeks of radiation to ease the pain in his back. Also he thought he should have a PET scan. I was getting madder and madder because this same doctor had seen John a few weeks before with bad blood results but sent him on his way. So…I said “if you are so concerned now about him, why don’t you call the lab and put a red flag on his lung biopsy so we can find out what the hell is going on??” He sputtered about dyes and slides, etc. We said “no” to any other treatment because of his severe pain. He was mad and left the room. The internist came and talked to us again and reassured us we were making the right decision. He was soooooo kind and caring and a good listener since we were caught so off guard.

We transported John the next day to the same facility where my Mom lives in Holiday Island, AR. My sister Judy lives there also so it’s easy for us to be with John. Jolene flew down, Denny came up from Texas for a few days but is now in La Veta working on the rv park. John was immediately put on meds and the process began. In this short amount of time he has gone from being  able to walk with a walker, feed himself and communicate to now entering the not eating phase, but he still will eat ice cream!! He sleeps about 22 hours a day and one of us is with him at all times. He knows us but tonight he is not responding to me as much. He has had his eyes open quite a bit but I’m not sure what he is thinking or seeing. I hope he isn’t afraid? I cry every night as he looks at me.  We tell each other we love each other and give hugs and kisses and we feel very close. It’s like I am having a normal brother/sister relationship with him for the first time since we were little. My heart aches so badly I can barely handle it. Of course I’m a little manic from the staying up all night with him. These silly hospital beds, the sliding down, the pillows getting all messed up as we try to pad him from the rails, it makes for a busy night. I am determined to invent a comfortable non slidable pad that won’t cause all these issues for patients in hospital beds. One night we had him all settled and comfy, (great staff at night who help move him around in bed) and I got settled in my chair. In about 15 minutes he was squirmy and I got up to check on him and a pillow was right over his head. Yikes.

John always had a girlfriend and loves the ladies. They have all fallen in love with him at the hospital in Springfield and here. He would have been quite the charmer I do believe. Probably married as many times as me!

That’s it for now. It’s 2:45 am. He just had his pain med and is not squirmy.

 

 

January 1, 2017

31 Dec

It’s not quite 2017 but wanted to write tonight. This will be my 11th year of jbirdworld. Crazy. Is still need to print out a few years so I can get them in notebooks. Who knows, maybe my book will happen some day.
We’ve had a nice day together and with my sister Judy and Marvin, Juli’s kids Lacey and Jonathon. She would be so proud of her kids and how they are growing into fine young people. Spent time with my Mom who continues to amaze us. We talked politics, travels, family history. She is so sharp. We took a couple of walks around the halls and I couldn’t believe how fast she went.
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Jumper seems a little lost without Meeko. I wonder what a pet thinks when their buddy is gone? I can’t wait to see how he reacts to Bendi. I hope it is fun. Meeko hated Jumper when we first got him.
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We head home tomorrow and hope to be home Monday afternoon. We really love our little place down there. The weather will be in the 80’s a few days so golfing should be great and the start of my new exercise regimen. I downloaded this app in the beginner phase which combines walking/running. We’ll see, no promises as of now. Have already begun cutting back on sugar drinks and next step is caffeine. Again no promises, just trying. River Bennd is a good place to be for these projects, especially with the pool.
Thinking about 2016 and ready to let go of it. It was a good year and an emotional year for me. We bought our Brownsville place last February and knew we wouldn’t work on it until this year. We were busy in the spring getting the park ready to open. It’s always fun to see who comes and stays with us to help. Last year we had Dale, Mona and Dean and Robin. Since we had so many branches blown down last year, Denny is hoping that clean up won’t be as bad. May was rough due to my back going completely out and feeling anxious about it happening again. The rest of the summer was so busy and business was great. The grandkids spent their first 5 days ever away from Mommy and we had a really good time. Hopefully they’ll come again in 2017. For the first time in 30 years of sobriety I really struggled with the desire to drink. Drinking is part of the rving experience but when it gets out of hand I get very uncomfortable. But…..thanks to some wonderful friendships, AA and getting back to prayers and spirituality and made it through a rather horrible time.
A couple of years ago I reconnected with my high school friend Judi. We had India in common. In August she asked me to join her on trip to Mumbai in November. She also said she would go to Namakkal with me. Fast planning of getting a Visa and figuring out dates and then finding out we were flying business class. We left on Nov 3 and returned on November 16. It was a fabulous trip and a few new mission ideas for both of us.
Since November 17 we have traveled from Colorado through Kansas and Arkansas to Brownsville and then once again back to Colorado, Kansas, and Arkansas for the Christmas holidays. Will be totally fine to not travel until we head home in March!!
2017 business wise is looking excellent. We are both going to try and enjoy our business and the great people we meet. It’s amazing how many new friends we have made. I’ll start the spring with a Ricky Tims quilt retreat in March. There will be 2 retreats at the park in May and October. My friend Carol will continue to teach through the summer so there will be a lot of creativity happening. Hope to lose a little weight. We are both very aware that life is precious each day. Happy New Year everyone and I hope to keep up with my blog this year.

Gateway in Maduri India

13 Nov

Up and ready for new day in Indaia. Today we travel back to Mumbai for one more night and then a day and a half of travel back. Some of you may be thinking “why such long trip back to US”?  That’s how we received such great business class rate. $2200 round trip for this adventure.

Now I will catch you up about the Nammakal trip.

We arrived in Nammakal by way of Chennai and Maduri At 1 pm on Friday. Dr Samuels and driver Kartic picked us up in Maduri for the 3 hrs drive. The scenery is so greener and not as cluttered. We had many fun conversations with Sam during the drive and he filled us in on latest news in Namakkal.  Of course the ladies needed a “toilet” stop.  No this is adventure to find a suitable one.  We both said we are ok with holes in the ground!  He decides to go to hotel and use a room.  So…. we get the key to go to a room and Sam says I will not go with you so it doesn’t look suspicious!!!! Judi and I are laughing all the way to the room. We get to the room and we open the door and there is a young man in there. He stands right up and we say “oh we are here to use the bathroom”.  He is like “hello ladies” and explains he is manager of hotel etc. We do our duties and go back downstairs and Sam decides he’ll go up.  I say you are in for a surprise! OMG. He comes down and is laughing and when he saw the young man he said”what the h are you doing in here!!”  Sam was upset that the young man did not leave the room when we were using the loo and when we all left the hotel I’m still not sure if they thought there was a quickie involved!!

Finally we are in Namakkal and the first stop was the CARE Center where it all started for me 8 years ago. There were beautiful kolums which I LOVE and leis of roses and chrysanthemums. We visited with staff and then it was time to go see Gomathi and Murugans home which we helped build.  The house was wonderful with electricity, water and gas stove inside. The village people were all coming by and some remembered me from before as I them.  Last stop was the Hotel Nala. They too welcomed us with leis of flowers and Judi and I were feeling quite Royal. Saturday was full day of driving and visiting the Kolli Hills clinic in the mountains.  Many monkeys were frollicking as we drove through the 70 hairpin turns.  Oh…..the clinic was wonderful. Located just outside a poor village, mothers and their babies and small children greeted us.  Another lei of flowers and a bouquet of flowers. We are overwhelmed by the kindness of this area of India.  We played with the children and passed out nutrition packets. We said our good byes and headed down the mountain where we had a picnic, took photos of wild poinsettias and monkeys.  We visited with 2 more families-one an 18 yr old girl who is paralyzed.  Very sad situation due to no facilities to really accomadate her handicap. Will she foreverp

 

just live life on the this straw bed?  What she did have was the cutest ornery smile! (I can’t wait to show photos, stupid IPAD)  Last stop was the family of grandmother, daughter and granddaughter infected.  I met them last time and the 10 yr old was then 2 and in the hospital with an injury.   It was good to see her and to visit. Last night at Nala Hotel and our favorite meal of garlic chicken and rice.

Uneventful trip to Maduri and final chats with Sam about new needs for Nammakal.  Thankfully he made arrangements for doctor in Maduri to see my shoulder.  A driver and a young man took me to the hospital. Immediately I was taken go X-ray.  (There is a room full of patients) Next I sit with Doctor and he says bone is fine, must be tendon. Next I go to physical therapy for electrode and heat therapy. Then back to doctor and he gives me directions and Meds.  I pay 1394 rupees which equals about $22 dollars. I’m accompanied back to hotel where I pretty much sleep through night.  Yes I did receive preferential treatment, but I could see everyone in waiting was cared for and when you were with the doctor, other patients were in there with me and was consulting with each of us.  Very streamlined.

Now we are arranging driver to airport and the possibility of MRI tonight because of much lower cost.

The adventure continues. Namaste

Trumperupee

9 Nov

What an exciting/scary few days we have had. Of course I was very surprised by Trump winning. Actually I was in shock and sadness. It as very difficult to keep up from over here because the updates didn’t keep up.

Soooo….Judy came home with some news that was even more shocking than Trump.  The 500 and 1000 Rupees are no longer any good.  This means we have a pile of rupees that are worthless.  We are set to fly to Namakkal Friday. Beginning today you will be able to exchange old rupees for new ones but only 4000 a day.  That is equal to $60 dollars. They are also doing away with the 1000 rupee and going to the 2000.  This is all due to the government putting a halt to the black market of counterfeit rupees. No one knew this was going to happen because it was imperative that the counterfeiters would not know the new design of the rupees.  We are here at a very historic time because this has never happened in India!!!

Tuesday here is your Monday. The company that Rich, Judys husband, works has started a give back to the community missions. Tuesday we visited the children’s cancer ward at the Government Hospital. The mission is called Cuddles. 3 years ago they began the program to help with nutrition for the children in between their cancer treatments. They also provide food for the families during cancer clinic days as the the long hours of waiting and while their children are having chemo is grueling.  We passed out hard boiled eggs, an ensure like milk, a small meal and bananas. They are so grateful because before this program they would be sitting on the floors in the hallways where it is so crowded and very warm with nothing to eat. The children would not anything to eat after their chemo treatments.  Also many of them have traveled as far away as 12 hours and will be doing that trip the next day.  Now they will have nutrition to help them through their treatments. They will have food sent home with them. The ward had about 40 children receiving their treatments. I felt like they were being well cared for and there were nurses and doctors there checking on them. The walls are painted with giant Disney characters.  They are in iron cribs that looked antique. The Cuddles employees were fabulous and have very busy jobs. The company provides milk and anything else that they may need for 2 months. There were all forms of cancer being treated and ages from newborn to around 7 are the ages of the children we met. The families were very sweet but you could see the sadness in their eyes for their little ones.

I am so disappointed because I haven’t figured out how to get photos onto the page. Hopefully my descriptions will suffice for now.  Our next mission of the day was visiting with girls who had been rescued from sex traffickers. I cannot go into details but when I see you in person or if you come to a presentation I will tell you more in detail.  Just know that the work the social workers do is over and beyond what is needed to help these girls. It was heart wrenching to know some of the stories.

Of course my mind is racing on how I can help and Judy and I hope to come up with something along with the company employees.

Today is market day to look for fabrics. We hope to be able to use credit cards but many merchants may not have that capability. I imagine they will have a hard week until the rupees really get back into circulation. Our friend Lorna is joining us. She is an ex Pat from Michigan.

We had a wonderful dinner last night at The Good Wife in the banking district of Mumbai.  Padua and Angi treated  us. Much laughter. Beautiful buildings and architecture.

Interesting tidbit: Just because you live in the slums doesn’t mean you aren’t working or have nothing. Many families own that little piece of land and then as they have more income they add a level and sometimes even another level.  That takes many years. Now as we drive through many slum areas, I envision their wealth by the size of their shanties.

I did see some kite flying on one of our journeys. I am so glad I don’t get car sick anymore.  With all the slamming on the brakes and starting back up there is a lot of jerking around.  I will never complain about bumpy gravel roads in La Veta or anywhere else again.  You don’t know bumpy like bumpy is here.  Many homeless dogs on the street and it seems they like to do their barking at night.  It sounds like they are all talking to each other.

That’s it for today.  Next big adventure is heading to Namakkal tomorrow. We are flying to Maduri by way of Chennai and then Dr. Samuels and driver will pick us up and we’ll drive to Nammakal.

Namaste

Back to Blogging

6 Nov

I thought my India trip would be a good time to start back writing.

This summer was rather difficult for me emotionally and I felt I couldn’t write about what was happening. Some issues were resolved but I still have a couple of problems to still deal with regarding next season. Can you believe that will be our 5th year. Whew. We have many reservations already.  It has still been a great fit for Denny and I.  He still keeps the park and buildings in immaculate condition. I still keep everything in the office and house in a chaotic state!! Thankfully I hired my friend Terri to work at least one day a week and she was a great organizer. She once said to me “It amazes me how much you accomplish being so unorganized”. I thought that was funny.

It is now 12:04 am Monday morning. Still struggling with sleep times, but that is okay because we are on such a laid back routine. I so love being with Judy. It is incredible how our lives have been so similar since high school. We have had some great conversations. Her husband Rich is an engineer and has been working over here for 3 years I think. They have a lovely apartment that overlooks the city from the 23rd floor. Today I met some of their friends. Extremely fun brunch and conversation. Lorna was so hysterically funny with her stories and Robyn and I had many interests like I have, including quilting. I’m a little concerned about my fabric shopping because she said much of the fabric is not the best quality but we have plenty of time look and I hope I can come across some great prints.

Looking forward to this afternoon.  We will meet Judys friends at a hotel for Lunch and Mahjong! Who knew. Then we both have massages at 3. Can’t wait for a yummy massage. Back has been cooperating pretty well. I was really flared up from running through JFK with no shoes on and a heavy backpack. Was so thankful for being in business class and those wonderful reclining chair/beds. Forget tiny homes, I could live in a tiny cubicle like on the plane. There was storage, tv, tray table, cabinets, etc. All  I would need is a tiny sewing machine and a few yards of fabric. 👍

Denny should be in Brownsville . He drove a trailer down with furniture, tools, sewing machines, golf clubs.  I hope he can play some golf before heading home. I’m excited about being in Brownsville and getting our place all decorated. Our friends Sherry, Dave, Robin and Dean are already there. We have a lot of traveling to do when I get back and we really won’t be totally settled until January.

Thats it for now. Will try to write as we do our many activities the next 10 days.

July 2, 2016

2 Jul

Happy almost 4th of July. What a great weekend it has been. The park is full and overfull. Lots of travelers without reservations driving all around Colorado. We let 2 drop ins last night park in the driveway and 2 tonight. Had big mixup today but that is the only one we have had in all the craziness of moving people around on the reservation sheet.

Today was the parade and it was great fun. For some reason I always feel like crying at the parade because it is so sweet and quaint. We have lots of company. Claire, Carleigh and Karen are staying in the motorhome. Claire is selling her beautiful silverware jewelry and did really well today. John and Bloom are staying with us in the house. John was our gym manager back in the day. We are all enjoying 5 year old Bloom. Cute photo of her and 93 yr old Dick.

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Joe and Connie and Carl and Konnie from Topeka are camping with us.  Very fun to have all our friends around. We gather in the evening for dinner which is the only time we can be together.

Trying a new stomach thing tomorrow. Apple Cider Vinegar with Mother-who has heard of that?? It’s the cider made from all the remnants of the apples used for making cider. Anyway tomorrow morning I will drink a tablespoon of the vinegar mixed with raw honey in a cup of hot water. One of my friends, Pokey told me about this and she says she feels fabulous. We will see.

Life is hectic, hectic, hectic.  The reservations are overwhelming and we hate turning down so many people wanting to come in. Mainly we can’t put any one in a site for more than a couple of days in July. Wow.

Looking forward to a short trip to Taos with Claire and her family. We hope to get inside the Taos Pueblo on Wednesday. It has worked out nicely having Wednesdays off. It does work best if I am out of the park.

Physically feeling better. Haven’t taken any meds for back/neck for 3 days. Actually walked around quite a bit today with no ill effects.

The strange people that I had coming in seems to have slowed down. We’ve also made some policies about car sleepers etc.

That’s it for now. Almost out of battery. Peace everybody.

 

 

 

Let’s talk medical care

19 May

Before I go into what is happening now, I’m going to preface it something else I have going on.

When someone would mention their dislike of ObamaCare, I would always say “Whoa, I have insurance because of ObamaCare”.  Even if I would have been able to have insurance because of pre existing circumstances, my insurance would have been high with a high deductible.  Just wanted to get that out of the way.

When my friend Judy was here helping us get the books and sales part of the business organized, I decided to add up my medical bills that I had paid out of pocket last year. I was SHOCKED  at the amount. I pay my bills every month, so there is a $400 bill here, a $1200 bill there. I did have insurance last year but nothing I had done in the La Veta area was never covered because I was out of network so I would do major procedures in Topeka. I had to have 2 endoscopies to clear up my esophagus and the 2nd one because I had some irregular cells due to Barrets esophagus.  I also had to have 2 Cat scans and 1 MRI because of back issues. In the late summer I had a “huge arthritic episode of my right hip” and had to have an injection in my hip plus numerous doctor appts so I could have tests set up and for medication. Okay, enough background.  My totally out of pocket was over $13,000!!!!!!!!! Plus my $450.00 premium.  Whoa Nelly, (isn’t that nicer than my usual “what the fuck!!”) I still have one more $500 bill to finish out my 2015 medical bills. The billing system in our area is horrific and when you receive your bill you have absolutely what it was for.(Supposedly they are once again getting a new billing system).

In April I went in for my physical with my little list of issues. Another endoscopy is needed along with the rest of my stomach problems. As I thought about my out of pocket last year I decided to get really aggressive regarding my stomach. I have been seriously addressing the fiber and probiotic and drinking more fiber remedy. Tummy is better. So….I’m eliminating the tummy doctor for now. I now have a physical bill, a doctor bill plus 2 injections bill from today. Speaking of today, it was horrific. Everything was going really nice. Little chores done, washed the kitchen window over the kitchen sink, laundry, town hall to see about having our road graded before Memorial Day. Then I took my 2 morning pills and choked on the water which made me cough which made my back go into such a spasm that I fell to my knees. I had to crawl through the living room and out the front door to get Denny. After calling my massage therapist to come by, and taking some meds and calming down, I was luckily able to get into the doctor. Before the doctor I could barely lift my legs or my arms or move or get out of the chair. After a toradol and steroid injection, more meds and resting, I feel better. I can’t believe how much I cried from the pain.  I’ve already heard lots of “backs going out” stories.  Wish mine was more exciting but I was surprised how common it is from a cough or a sneeze.

A financial lesson learned, another weird injury for my body. I still somewhat heal up but I have a few friends with MS and Parkinson’s. Also have 2 friends going through very serious cancer procedures.  Blessings for them.. aaaaaaaaaaj