Saturday, October 27, 2012

wheels for wheels

I came across something today about a young boy in my community. It reminded me of my own situation a few years back. I haven't written about it yet, but the thought is there that I should. I have started this several times and always with a " What if ? " Somethings are still very hard to talk about, let alone write about. Sometimes the hardest part of a journey are the first steps. Fear of failure also make things hard to start. My fear of failure here is thinking of a way to write it and make this story more than medical but less than emotional but it needs both to make it what it was. My life with Mark and more than likely an undiagnosed pheochromocytoma during pregnancy.

It is a cold and emotional night for me tonight so Marks story will wait awhile longer. Tonight I want my entry to be for this young family in my community. My life with Mark was very similar to this family. I know and remember all to clearly the struggles of life with a child in a wheelchair. Besides needing to modify your home to accommodate a chair, medically needy children need to get to drs visits. As the child gets older and larger so do their chairs. Eventually it gets to be physically challenging to get both child and chair into a car and getting a van sooner or later is a necessity. And it then becomes yet another set of struggles to get the chair into a van. If you get hurt transferring your child, it makes caring for them at home even harder.
Please read this families story and think about how difficult it must be to be the parent of a special child. I have been down that path of life and know first hand what it is like.

Wednesday, October 17, 2012

   Today was really hard. I chickened out in the end. I almost didn't go through with it. We had a good day. The temperature was in the low 70's and the sun was out all day. The neighbor lady, Lisa spent almost all day with John and I taking pictures of us.

  The vet was only 5 hours late. I called the excavator man and he was some where else and didn't know when he would make it out. Miss Nosey and the big guy were extremely well behaved and went right to their stall this morning. Remarkably the goats even stayed in the barn. I had so many visions of all the possible things that could go wrong and many back up plans to cover all the bases.

 The appointment was for noon. At 2 I called the office. At 3 I was thinking that maybe fate was trying to change my mind, Poor Dr. Brian got here about 6. We talked it over and I trotted Lucky out to the back field and fed him a bag of apples. John had said that he wouldn't think any less of me if I didn't stay. I handed Lucky's lead off to John and the vet tech. After I got about 150 ft away, here comes Lucky running past me headed toward the barn with his lead rope flying behind him. That really caused some serious doubts to cross my mind.

  I walked him back out again and gave John back the apples and made sure the tech had a better grip. I walked away . John fed him apple slices as Dr. Brian put in the Iv and John says Lucky looked right into his eyes as the medicine was given and that he went down quick and easy. I love John all the more for standing in on a chore that I couldn't do.

  The excavator man showed up as the vet was pulling out of the drive.Our other neighbor Kaye came over as he left ( she has  horses also) and as our trying day turned into night a really loud whinny came rolling across our field, I guess that was Lucky telling me that he made it to the rainbow bridge.
 I hope that my grandfather is giving Mark and Hope riding lessons tonite

Monday, October 15, 2012

why is goodbye so hard

Why are goodbyes so hard? I've made the appointment to have the vet come out and euthanize Mr. Captn Crunch. I have lined up a man with a back hoe. It is a decision I have been struggling with for most of the summer. That decision still does not set well in my mind. I have never been one to make that decision for any of my pets easily but I have never struggled with one this hard.

I am sure I will be fine once it is done with but right now I am a mess over it. All of the pets that I have had euthanized were ill and there was no chance of recovery for them and the decision came after medical treatment with little recovery and it was a matter of speeding up death and preventing pain. He is very old and thin and a bit disoriented sometimes. But when he sees dinner coming he can really hustle to the barn. Common sense says that winter is coming and it will be a royal pain if he should happen to die in the barn.

I have been present during this with my other pets. I have had the misfortune of being present at other barns twice for other peoples horses. One horse was already down and the other had colic. I don't know if I want to be here for this. Part of me feels I need to see this through and be there til its over and the other part doesn't want the memory of it.

All three of them know something is up. Miss Nosey is being a super suck up and really affectionate. She keeps following me through the field and everytime I stop she puts her her forehead on my knee. If I ignore her she head butts my elbow. She has also taken up giving me big dramatic sighs. This is so out of character for her. If I go out to my thinking stump, she follows me and wants to play shake. Normally with her it is a battle just to catch her. The big guy is being really mellow also. No high tailing it around the field lately or playing scared you, where he runs in circles around me then looks back to see if he scared me. He just hangs out close by and if he sees me looking his way, he gives me his biggest Tiger Woods smile.

I spent most of this evening giving Mr. Captn Crunch a really good grooming. I spent a good hour on his tail. I braided up a large piece and cut it off. Normally I wash and condition his tail before I do I deep brush out. This time I didn't because I want to keep it as it is. I wish I could figure out a way to bottle his horse small. All horses smell like horse, but each horse has their own smell also.

He knows something is going on. Any other time if I am feeling down he is always the one to let me stand in front of him and wrap my arms around his neck and bury my face under his mane and cry until I can't cry any more. Tonight after he was brushed out and he had ate all of the peppermints out of my pockets he tuned his back to me. He used his nose to push his stall door open then pushed me out.

Last night I went to my favorite search engine and typed in " How to find Joy ". The second item that showed up was from a site with " all creatures " in the address. The vet I use works out of All Creatures office. The author of the article was talking about chickadees. I have a few bird feeders outside and most of the visitors to it are chickadees. I read the article and at the bottom near the credits were links about whether pets go to heaven. I like to think that if pets bring us this much joy in life, that it would only make sense that there is a place in heaven for them also. I guess I'll find out about that later in life.

Saturday, October 6, 2012

something from Davey

 This is from today from a fellow pheo/ para patient Davey Bear Thompson who has given me the OK to post this here on my blog.  Thank you Davey

We have gelled so well together.
No longer just a group.
We are just like a small FAMILY.
We would jump through every hoop.
But when we hear a passing.
We take it close to heart.
We have all lost a loved one.
Someone who touched our hearts.
So this one is for Steve his Wife and Family.
From all his Pheo/Para adopted Family.
Life is but a blessing given out of love.
Lets keep our loved ones in our hearts.
For there they live once more.
And reach out our hand to everyone.
Who have died and LIVE once more.

Rest well Steve :(

Friday, October 5, 2012

more about dying

More thoughts on dying. I don't think I am hung up on a dying streak. Dying is just fore front in my thoughts recently. I guess those thoughts are normal and to be expected. It has been a week with thoughts of death. I have come to the hard decision that it is time to put my favorite horse down. Not today but in the next week or so.

I am on an online support group for people and their caregivers with pheochromocytoma. It is other people just like me living and sometimes dying because of this crappy illness. Most of the time most of are living as well as can be expected with this. There are always a few wonderful people that are getting treatment and doing what they can do to win the battle this time. Some are winning, others are holding steady and others are losing.

I love talking and reading about the treatments they are getting and talking about side effects and various medical knowledge that can be learned from interacting with other people going through this. Even if it is something as simple as another person on the same medications and same side effects but their doctor told them to incease their salt intake because the medicine makes you sodium deficient and by increasing your salt eliminates the muscle cramps. It is great just to find another group of people going through the same thing as I am and to know that they know exactly how you feel.

Sometimes though, we lose someone. It hurts. I don't know this family and would not know them passing them on the street but knowing that they have lost the battle hurts as much as if they were my next door neighbor. My heart breaks for them and for the rest of us fighting this. I wish I had a way of lessening the pain and grief for these families yet I know that nothing but time will do that and even time never completely heals the pain of losing a close loved one. I don't know how the rest of the group feels and will never ask if they feel the same loss of hope everytime each of us finally loses our battle. I wonder if the thought goes through anyone else's mind " Which one of is next? " It is sad and scary to be a bystander because sooner or later it will be my turn to be the one that is dying.

I go through survivor guilt each and everytime. Most of the people passing away are a bit younger than me that still have children at home,are active members in their communities and churches. They have lots of loving, caring families. Their dying is going to leave terrible voids in peoples lives and will change the families lives forever.
I am one of the older members of the group and close to being one of the ones who have had this illness for the longest amount of time. Each time one of these younger people die I wonder why I am still here

more on dying

I am down and dark today. I am not sleeping well. The pain meds are not working and I cant seem to find a comfortable position. I thought I was dying last night, my heart likes to act up as soon as I drift off with the crazy jack hammer pounding away. I finally got out of bed but then I having waves of dizziness along with the pounding in my heart. I came downstairs to my favorite chair because I don't want to have John wake up with me dead beside him.

Someday I want this to just hurry it up and be over because this isn't much of a life at this time. This isn't something like a normal heart attack that I can just go to the emergency room and they can call in a few doctors and fix me up and send me home. Visits to the emergency room are just a waste of time and resources. Most of the doctors there have never even heard of a pheochromocytoma let alone treated anyone with one. Second thing they want to know is who is managing your care and then why are they not treating it? I can give them the names and phone numbers to all of the specialists involved in my care and my complete medical background. I cannot answer why none of them are treating me.

Some days I want to scream and beg for just more time. I'm not ready yet. I've got things to do yet. My job isn't done yet. I have finally found a better spot of contentment and peace. I don't want to leave it so soon. It's not fair. We need more time.

There is a family in an online support group that I follow that is currently getting hospice care . His 40 th birthday will be next week. His family was asking all of us to send cards. He passed away tonight with his family, friends and pastor with him singing " What a friend we have in Jesus." My heart is breaking. Now that I am with this group of less than 500 people it is terrifying to know people just like me dying so fast. We are all young.

I don't want to die alone or in a hospital. I don't want John home alone with me. I don't want Katie with me either. I worked with terminally ill patients before Mark died and doing the day to day care you develop an intimate bond with those patients and their families and when they die, it takes a toll on you also. Katie was with me when Mark died and had to help me unentangle him and call 911 while I did CPR on Mark. I can't ask or expect or even want her with me. That is not how or what I want her to remember me for.

Tuesday, October 2, 2012

dump picking

    I grew up in a very poor region of southeast Ohio Dirt road poor. By today's standards we were poverty stricken but we were no richer or poorer than any of our other neighbors. The house was warm when it was cold out. The roof did not leak. There was food in the pantry and our water was clear and cold.
I grew up in the foothills of the Appalachian mountains. Families did not move far away. Just about everybody had someone in their immediate family that worked in a coal mine.
If you drove along the roads in this area you could see long ugly scars left behind from where the coal companies broke open the ground. Certain township roads fed off from the county roads. These roads were always an adventure. Some went into deep, dark forests where very few cars or trucks traveled. The grass grew up in the centers. Trees branched outward and formed a canopy over the gravel blocking out sun and noise. Other side roads would flood and wash out and you may have to drive in reverse quite a while before finding a place wide enough to turn around.
Certain roads were only one lane and very narrow. If you came across someone coming towards you you prayed that they slowed down and moved over enough that you did not end up off the road.
A friend of mine sent me a link to Freecyle and that brang back these memories. Where I lived did not have a trash pick up. I think recycling was our nature with out a name. Our household garbage was always sorted. Paper went in a paper sack. Glass items were sorted as returnable's (pop and beer bottles) and cans. Occasionally an item that was neither came to be needing disposed of or the collection was getting big enough to warrant a trip to the dump.
The dump was an area off of one of those dirt side roads that the coal company cut into about 30 feet away from the road. It was this monstrously ugly and fasinating area about 3/4 mile long and probably 50 or 60 feet deep and probably 75 feet across. No one ran the dump, it was just there. But there were unspoken dump rules. Usable items were to be left at the top by the road, such as wooden household items, dressers, tables, chairs. Children's stuff went to a different spot by the road. Cans and bottles went to another area. Fridges stayed at the top for a while and televisions always landed with the screen facing the road.
I always loved going to the dump with my grandpa. It was always an adventure for me. We would drive and sometimes if it was just the two of us on the way there I could shift the gears on the truck, other times he would push the seat all the way back and I could sit on his lap and steer.
When we got there, he would drive slowly past and then turn us around and come back and park. We would get out and walk along, picking up stuff from the wrong side of the road, tossing stuff to the right side and proper areas. We would talk about the stuff that was there and why it was there. You could tell alot about people by what they threw away. Harsh judgment was passed on folks who threw away paper products and things that should be buried or composted. Dressers or chairs that were thrown away because a handle was missing or a rung was lose was almost a cardinal sin in grandpas eyes. Those items often went to the truck to be taken home and fixed, often to be given away to someone else. Rusty wagons and bicycles were also brought home to be sanded and painted and given to family members.
If grandma went along, we sorted through clothing piles looking for items that could be cleaned and mended and passed along. She always kept her eyes out for pots and pans and mason jars.
I remember the anticipation of dump picking and the hopes of wondering what kind of toy or treasure I would find. Some stuff was just sad. One time there was a baby crib, filled with clothing and toys. That spoke for itself. Another time there was a shiny car hanging off the edge filled with beer cans. Once there was a dining room table with 6 chairs. Someone had placed a table cloth on the table and put matching plates on it.
To this day, I like to curb pick. Just because it is setting at the curb doesn't mean its junk.