Friday, November 23, 2012

It has been busy here for me. I finally have an appointment with a dr. to hopefully get my hernias fixed. And after hours and tons of paperwork I am getting into Mayo Clinic in Minn. on Dec 21st. The appt is set but... after reading the packet that came, appts are " typically 5 - 7 days, excluding weekends and holidays". Dec 21st is on a Friday before Christmas, I just cant see BlueCross ok ing me to be inpatient for testing. I have had all scans recently done. My appt is for 7:00 am. Now my task is to figure out how to get there. Katie says we can drive it but I am afraid of hitting snow and traffic and getting stuck somewhere on the other side of Chicago. Amtrak and Greyhound will be the same length of time. I maybe able to have some fun on the ride if I plan it out right ( I keep thinking of Dr. Lectors' special lunchbox ) As most of you know, I had my 3 rd visit to NIH in early November. I only had partial testing this time due to the amount of radiation that I have already recieved this year in previous tests. I had a new dr this trip and from the moment I stepped in the room the visit went down hill. Either my other dr did not take good notes or this one was not prepared. The new doc is at least understandable and sometimes that is half the battle in getting quality care, at least in my book. I cant do what they want if I can't understand what they are saying. Make a decision and stick to it. Not flip/ flop around. I had my usual round of lots of blood work and 24 hour urine testing. My normets levels are really high and red count is creeping back up. I wasn't set to see a hematologist this time so the blood issue needs to be addressed locally. At the time of my visit there my scans had only been glanced over and not too much had changed from my last set of scans. A week ago the dr. at NIH called me. Apparently they decided to go back and review the tests again. In April something was showing at 4. In Julys scan it was 8 and now on this scan it is a 12. The call was for me to get into a urologist as soon as I could. On the scans it looks like something is growing in my bladder. I was able to get an appt with the urologist that did last years surgery and I had a cystoscopy done on Monday. The dr. is not sure what it is yet, but Dec 12th I am going into the main U.H. hosam having problems with NIH still with all of the drs being on the same page. It seems from visit to visit what they want changes. It is either yes or no. They need to make pital to have it either biopsied or removed. Since the dr. does not know what it is I have to have it done where a full trauma team is available in case it is another pheo. That also means I need to be on the proper medication to be blocked. The dr called NIH and talked to Dr. Pacak and NIH wants samples of what ever this is. So just when I thought things where finally getting back on the right track I guess my train is taking another detour somewhere I wasn't planning on going and I am sure that whenever, whoever said " enjoy the ride " this isn't what they meant

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.

Sunday, September 30, 2012

little girl wishes

I wish I may I wish I might give away my wish tonight

I hope you wish for love and family and more days like today

I hope you wish for bare feet summers and hotdogs and lightning bugs and a jar to put them in

I hope you wish for strawberry ice cream and sticky stuff on a stick ( cotton candy)

I hope you wish for mud puddles and frogs

I hope you wish for purple my little ponies and zoo zoo pets and a real pony of your own

I hope you wish for puppies and kittens

I hope you wish for hugs and kisses and a million more wishes

I will keep my hopes and wishes for you to myself and pray that your guardian angel never strays from you little one

Saturday, September 29, 2012

Where is home ?

    Where is home ? Is it the place you where born in ? Is it where you grew up and went to school at ? Is home where our parents live now? Is it somewhere different than where we were raised ? Is home where we live now in the present or is it where you go when no one else will take you in.

    What makes it a home once you have decided where home is? Is it the house you live in ? Or is home the people that live in that place called home? Homes can be various things from sprawling mansions to silver bullet mobile homes and everything in between. Ideally the people that live there make the dwelling the home.

   I have been restless and lonely and feeling like I am missing something lately. I finally figured it out the other day. I am homesick. That puts me in a spot. I don't know where home is. I am not missing my family. I know where they are and how they are and that is not it. I know where I want to go but everytime I have went there in the last 10 yrs or so I have only left feeling more lonely than ever.

   After 5 years of calling where I now live Johns place and of John telling me " Its our place." I guess I have a home.  Fredrick W. Robertson said  " Home is the one place in all this world where hearts are sure of each other. It is the place of confidence. It is the place where we tear off that mask of guarded and suspicious coldness which the world forces us to wear in self-defense, and where we pour out the unreserved communications of full and confiding hearts. It is the spot where expressions of tenderness gush out without any sensation of awkwardness and without any dread of ridicule. "

   If Robertsons' quote is true I must really finally have a place to call home and a person in it to make it a home with me.

Thursday, September 27, 2012


Over breakfast this morning John and I has a misunderstanding. I said something and he either wasn't paying attention to or he didn't hear me correctly. So he proceeds with his long winded side of the conversation. I'm lost. I have no clue why he is explaining this to me. I don't even know what he is talking about or why. I guess I must have been giving him the " I am clueless " look .

John and I speak different languages. He talks non -stop and with passion. His voice gets louder as he goes along and his arms take on a life of their own. I talk in my way, which either is a long build up to what I am getting to or very brief concise statements.

A few summers ago I kept talking about wanting to go to Presque Isle. Time wore on and I started to mention it more often. Summer starts to wind down and I keep bringing up wanting to go to Presque Isle before it gets cold out. Eventually it gets cold out and I chalk it off as a lost cause for that year.

John calls me at work one cold rainy day and tells me to wait at work and he will pick me up. He is there by the car waiting for me when I clock out for the day. I get in and ask where we are headed. I am told to just put the seat back and take a nap. I hate to ride in the passenger seat, not just with John and taking a nap is out of the question. He reaches behind the seat and hands me his baseball cap and tells me to put it on and cover my eyes.

It is pouring rain and starting to get dark as we get on the ramp to the interstate. He asks " Do you trust me ? " In my head I don't know. It sounds like a loaded question from my end . " I guess ." Is my response. I finally put the seat back after an hour of watching the wipers going back and forth. Triv is on the radio, ranting about something I could care less about so I retreat to somewhere else.

I can hear John telling me to wake up. I don't want to. The car has gotten warm and steamy and it seems like I have only just gotten to sleep. I open my eyes to see lots of neon lights and cars. A whole parking lot of cars. Rain and neon and car headlights are a bit too much for my half asleep brain to take in . John tells me " I'll let you out at the doors and you wait there while I park the car." I can't believe what I am seeing. " Where are we ? " I ask . Johns response was " Didn't you say you wanted to go to Presque Isle ."

What I meant was Presque Isle state park outside of Erie Pa, not Presque Isle casino. After a really good laugh we drove to the park to find it gated off for the winter.

  Tell me about your greatest misunderstanding.

Monday, September 24, 2012


I love my horses. I really do. A few weeks ago when I went out to feed them something was out of place. For being horses these guys are fairly neat and definatly creatures of habit. Everybody has a potty place. I opened up the gate and slid through a really large out of place puddle. I didnt think much of it at that time besides thinking someone is mad at me.

I went up the stairs and dropped down a bale of hay. I came down stairs and picked it up and went sliding again. I still did not think too much of it. I opened up the bale and and tossed the flecks where they needed to go. I came back later in the day to clean up the stalls and there are really large slippery puddles all over. I clean up these puddles and put down clean shavings. The horses are out in the field and don't seem too interested in me so I put down the evening hay and go back to the house.

I go out the next morning to these puddles again. I have no idea why someone is using this as a potty place. I try to step over it this time but my foot goes out from under me and I am now sitting in this stuff. Really slick, shiny goo. I have no clue as to what I am sitting in except that it is not horse pee. As I am trying to get up Miss Nosey turns around with a startled Neigh and her face and chest have ropes of thick slimey goo dripping down. Of course when I fell the can of grain went everywhere. In most cases that would be no big deal except I have two goats that will eat anything smaller than them . Which is still ok except Miss Nosey has never learned to share and in her haste to run the goats off she she rears up and hits her head on the ceiling and spins around and slips and falls also.

About this time my heart is racing and the only thought going through my head is get out of the way before I get really hurt. Right behind that is Rabies. I get out of the barn to regain my own bearing and let the horses settle down." Rabies, she cant have rabies" I tell myself. " I gave them shots right?" For the life of me I cannot remember. I go to the barn and get out my horse kit. There are 5 empty vials and the manufacture date is for this year. All is good with that part. So maybe she has gotten poisoned. I never ever store my grain near any chemicals but maybe the grain is bad from the store. I put my face in the bag and take in a long deep sniff. It smells ok. But maybe there is something wrong with it anyway so I decide to taste it. Now this is really smart. First it does not taste like what it smells like. Second what was I thinking of by putting it in my mouth if it was poisoned? That wasn't good enough so I go back to the barn thinking that maybe the clorox hadn't dissipated enough out of the water. So I sniff it. It smells like water in a rubber maid tank. Just to be safe I taste it also and it tastes like horse water. I have no clue, but I have had enough at this point. She is acting like herself and I kind of forgot about it.

That night as I bring them in the big guy wipes his face against my chest and covers me in slime. He rubs again and stuff is flowing out of his mouth . In comes Miss Nosey swinging her head from side to side with drool flying everywhere . " Houston , we have a problem here " I say to myself. I truly have no clue. Nothing. blank. I start over a mental checklist of what bills have been paid and I wonder if I am going to have to call the vet out. I love my vet and I know he loves me because everytime he comes out I put another one of his kids thru school.

After the initial panic subsided I get on the computer to ry and find out what is going on. Slobbers. What a fitting name. Commonly caused by a fungus on clover. Internet information says that it should clear up in a few days . I decide to close them off of one field for a few days to dry them up. After 10 days of wading thru horse spit this plan is not working. It may possibly be worse but I can't tell because two are drooling gallons a day. I move them back to the other field in the day time and put them in the barn at night. After a week of this back and forth with the fields I am getting tired and frustrated. I search a bit farther and find out that the only way to clear this up is to remove the clover from the fields. Sounds about right on track. We finally get the right stuff to grow only to have to plow it under. A week after the plow under , everthing is dry

Sunday, September 23, 2012


It is Saturday at my house which means it is clean up day. I have been walking around putting things to right. It has been a relatively quiet week this week and things are not looking too bad. I have discovered a baseball bat behind the couch. This missing remote control has located on a window sill.
I am home alone today and the house is subdued. The television is off and the radio is turned down low. There is some random road traffic as cars go by. The predominate sound is the neighbors children playing in the yard. I am going from room to room and am off in my zone. Some days now my mind wanders away from me.
Today my mind has sent me back to when my oldest child was born. I remember all of the excitement. What sticks out the most is going to a major retailer and bringing home the crib. A new baby needs a bed right? At the time we were living in an apartment on the third floor. It was a rather nice apartment as far as apartments go. It was light and airy, the rooms were large and there was plenty of closet space.
We were having a baby and all was well in life. The only thing we needed was a crib, a car seat, a couple of bottles ,some diapers and really small clothes. Babies are little people right? A baby is supposed to expand your family and double your love to your spouse We knew children would be expensive, but we figured that would be later, like about 16 yrs later when it was time to get them a car or 18 years later when it was time to send them off to college. No where and at no time did anyone mention to us that that we had to have stuff for the baby. And by stuff, they meant stuff, as in if it was in the baby department, the baby needed it. And that meant that our nice roomy, airy 3rd floor apartment would never be the same. How can a 9 pound human being that will only grow about 15 pounds in 1 year need so much stuff. The crib and car chair are reasonable things. But where is it written that it " needs" a changing table, play pen, rocking horse, strollers, portable playpen. Someone brought us cases of diaper for every stage of life ( hidden in one case I swear was sanitary napkins and a bag of depends). We received portable highchairs, regular highchairs, booster seats and a child sized lounge chair. All of these gifts are wonderful items. Most of these items came from people that have very neat, extremely tidy homes that would no more have an out of place item than a stray speck of dust.
The child arrived with out much fuss or drama. But one thing I did notice after loading all of the portable items down the steps and into our car and out again at what ever our destination was, was that the child never ever got to use these items. The baby went from lap to lap to lap. The best portable item would have been a rocking chair.
That 1st born child is now mostly grown and I look in its bedroom only to see a small neat desk and laying in the middle of the bed a palm sized music device

John and I


This song says a lot today. Please listen and have a great day !


Wednesday, September 19, 2012

What a pheo feels like

Life with a pheo and or a para is quite a journey. I hope and wish that no-one ever has to live with one in their body . How do you know if your sick? I've had a headache for over 30 yrs. Sometimes they are blinding, puke til you feel like your skull is going to burst, sit naked on the shower floor, with the water as hot as you can get it and pray to die headaches. Other days the pain feels like an old fashioned too small swimming cap is compressing my brain. Some days it feels as if the two halves of my brain have been separated. Sometimes if the headache goes away the next day I am afraid to move because I feel fragile, like an almost cracked egg and I don't want to move for fear a aggravating it again. Bright lights and sunshine bring on headaches, weather changes, loud noises, certain foods, certain noises.
Nothing beats heat radiating off of you from your belly button to the top of your head. Oh by the way from your navel down you are cold. I need to pee every 20 minutes. Not really but my bladder says gotta go, but its on /off switch doesn't work, but you go and try anyway cause if you don't in a half an hour your going to feel like there is barbed wire in your bladder and that little twinkle is not going anywhere until those muscles relax which may take away cause your bladder feels like you are holding a gallon and the next rest area is 75 miles away.
Anxiety and adrenaline, you bet. I hate being around people, not that I hate you, its just that some things you may say cause such an intense physical emotion response that I am afraid that if you push the wrong buttons, I may just tear you head off. Some people just don't know when to shut up and walk away and feel the need to push their point. I'm like the cartoon guy that has the red needle going up as he is getting angry. First my heart starts pounding and my body starts to go really tense. I can feel my torso tightening and my neck and shoulders are as hard as rocks and it climbs up my neck and across the top of my head. I cant control these physical feelings. Im going to worry about every little thing. I hate feeling this way. I hate feeling like a ticking time bomb. Sleep, who needs it, who wants to stay up and keep me company for the 3-4 days that I only sleep soundly for 2-3 hours. In these 3-4 days you better just keep your distance cause I'm gonna be in a mood. I'm tired, my body hurts, every single joint, from my ankles up. My neck is on fire and all of those joints are filled with broken glass. I'm sad. I hate me for being a bitch and I hate you cause you dont understand what its like with this stranger in my body. My brain never shuts up because I feel guilty about how I let you make me feel. or I feel guilty wondering about how my responses made you feel. I'm really not nuts, I just have a pheo.
I don't work like a dog to impress you. I have to be physically busy as a constructive way to put this adrenaline to work. If I don't work it off here and end up dead tired my body will twitch and jump all night long if I'm lucky enough to sleep.
Everyone is familiar with the flight or fight response. Think about how you felt the last time it happened to you . My body goes thru this countless times a day be it with a rude person in line in front of me or almost asleep in the chair. I've even woken up from a deep sleep with all of these physical responses surging thru my body.
It feels like a heart attack, pain, tightness, shooters down my left arm, left sided jaw pain. My heart is beating on a good day at 110 beats per minute, but it feels about the size of a grapefruit and it is jumping and twisting and then it stops, it beats so hard and so fast that once it resumes a normal pattern it feels like it quit beating altogether.
My vision is questionable. Some days I can see, other days not too well and that varies through out the day. I love the sun, but the bothers my eyes so I wear sun glasses all yr long.


What does it feels like to know you are going to die. We all know that we are born, we live our lives and then eventually we are all going to die. We all hope to live healthy, happy, productive lives. We live with our parents, our roommates, we find jobs and grown up friends. We get significant others, we have children or pets. We do what we can to find our places in the world. We settle into our comfort zones . And in the backs of ours minds we envision ourselves getting old, visions of motor homes and cruises, of our children graduating and getting married . We see our older selves teaching grandkids to ride bikes and teaching them how to fish and making christmas cookies.
I feel like the rug has been yanked out from under me . I don't want to die . My death was supposed to happen years from now. At home, in my bed, in my sleep. Softly, quietly in my sleep. It feels like someone has kicked you in the belly and knocked you to the ground. It knocks your breath out of you. I feel lost at times. I wander thru my home in a daze some days and as I look out the windows into my fields I wonder to myself if this is the last fall I will ever see?I am not supposed to die yet. I'm only in my 40s. I have a lot of unfinished things to take care of. I should not have to be making plans for end of life care. I have tons of questions. Questions that I want to ask these goofy doctors. Questions that are hard questions that they don't want to answer. How long does it take? What will it feel like? Will it hurt? Will I be coherent?They don't know the answers and pass me off to the nurses to answer those tough questions since they deal with death on a daily basis.
I wonder if the drs ever feel any guilt about dropping the ball and missing it? Do you ever wonder what your indifference has done to my family. What if I were your wife/mother/sister/daughter and another dr did the same to your family.
I am beyond angry. I told you I was sick. You blew me off and your indifference has cost me my life.
I am incredibly sad. I know all of the things that I will not be here for. I know the void that will be left in some peoples lives. In the grand scheme of things one persons life isn't much but in some peoples lives that one life is a big thing.
I don't think I want a funeral. I don't want people seeing my dead body laying there and talking about what a good job the undertaker did. Come see me now and talk to me. Tell me about what's going on in your life, I'm bored and lonely.
Most of the people I know and love have forgotten about me. Sickness makes you show your true colors. Kind of funny the people that I have been there for don't call anymore. I know cancer is a scary thing, How do you think I feel. But most of you know cancer is not contagious and it has not affect my brain or my feelings. Cancer is not even something we have to talk about, Hell I prefer it that way. I would love a diversion from it. Lets talk old times, beer, sex, work and gossip. I don't care lets talk about anything other than me being sick.
I worry about John . I wonder how his life will change when I am no longer here.

Tuesday, September 18, 2012

Old Red
Going to Grandpas' house was always the high point of my childhood. Weekends, summers and holidays were all spent with Grandpa. I didn't care if it was Easter or Christmas or that hateful city school was over, what I cared about was Grandpa.
 One Sunday we were planning on going " down home" to Grandpas. Usually that meant getting up and leaving early so our family could be there by 9 or 10. This particular Sunday our car had problems and we were running late. By the time that we arrived the rest of my family consisting of various aunts and uncles and cousins were already there. After walking into the house filled with various smells of something good cooking. After a few brief hugs I was told to go out and play until dinner time. So out the door I went. There are cousins to chase, hiding holes in the barn where there may be new kittens to name I was a happy kid for awhile.
 After a while we are all called to go wash up and get ready eat. We sit and hold hands and give thanks for what the good Lord and the land has provided for us. Fried chicken, gravy, biscuits that melt in your mouth, real mashed potatoes, fresh picked green beans with bits of home cured ham. Homemade love on the table with plenty for everyone . After dinner there is peach cobbler that is still warm from the oven. Grandma sure can cook.
 Everyone heads outside to escape the heat of the house and smoke their stinky pipes and talk of all the things you dont talk about at the table. All of us kids go back to doing what ever we were doing before dinner. As the day winds down and everyone goes home I start to become aware of an unusual quietness. Something is missing. Something is not right. As daylight turns to dusk I realize what I'm missing. Old Red. Old Red isn't crowing. That is the reason for the quiet. I find Grandpa in his swing facing the road, dozing, pipe in his hand and the bill of his hat down over his eyes.
" Grandpa ?" I ask.
 " Humm..Polecat." he replies
 " Grandpa, Where is Old Red/"
 He sits up and straightens his hat and re-lights his pipe and pats the space beside him motioning for me to come and sit.
 " Old Red decided to cross the road. Didn't quite go fast enough and a car hit him." Grandpa tells me.
" Grandpa, we just had chicken for dinner." I say to him.
 " That was a pretty fine dinner your Granma cooked today, wasn't it ? " he asks me.
 " Yes sir, I guess it was."

Soon there after that Grandpa passed away in that swing with his favorite hat on and his pipe beside him.
 As September turned into October the hens quit laying eggs and one by one entered the freezer.

Lori in her own words

ear from Lori herself in her own words..... Or as she is fond of saying.. "straight from the horses mouth"

Below is the same post originally posted 9/7/2012

Below is a post by Lori submitted on one of the support groups we are a part of. She has requested that everyone that reads this please help raise awareness of NET cancer types (Neoedocrine tumors). When you have a moment, please send an email to to have their logo change to something ZEBRA for November 10. If this happens, each time Google's homepage is open it will spread awareness for 24hrs. And when it's clicked on it will bring up NET search results!

Lori in her own words

If you are sentimental or an animal lover you probably dont want to read this. I hate having this disease. I know, we all do but some of us are lucky . Having a pheo is never lucky but in the life of this illness sometimes a few of us are lucky with only one or we get them later in life. Im a not so lucky one. I dont know what I did or who I pissed of at some point to have been dealt the life that I have had. In a nut shell from day 1 or close to it I was given a few seriously bad cards. But I have always done the best I can with what Ive got. I wasnt blessed in the looks or brains dept. nor in the luck or health dept either. Ive had one constant in my life. Horses.

My grandfather gave me my 1st when I was 7 and everyone was pretty sure I was going to die. At 14, I bought a horse and he is still with me 30+ yrs later, alot gray, a bit thin and some days I wonder if he may out live me.

Horses have been a constant in my life. A good horse is like a lab or a golden, they know you better than you know yourself sometimes. They have been with me through the ugly teenage yrs (my own and when my girls were hateful teenagers) My horses have been there for me when Mark died. They are who you tell your secretes to. Where you go when you mad or sad or just confused. Somedays they are my only reason to get out of bed and once upon a really bad time they saved me when I was seriously thinking of killing myself. When I ran away from a past life I made sure I had a back up plan for them if I couldnt get them here where Im at today. Ive checked myself out of the hospital because Im homesick for my horses.

John is the love of my life and we got together late in life. He knew I had horses and that my life pretty much revolved around them..WE knew that life together was not always going to be easy. Horses tend to be time and money consuming, but so are children. We have no kids together but would gladly trade a horse for a child, no questions asked. We both believe in hard work and dedication to get what you strive for. Together our goal was what has always defined who I am and what is my passion. I am the country girl. Im backward and naive. He is all computers and gadgets. He is techo geeko, Iam a misplaced cowboy. We bought a place in the country really cheap,the house is quirky (odd really) but it had a barn and enough land to comfortably house my horses. Ive been extremely blessed to have them in my life. No Im not rich and we have given up a lot of things that other people just take for granted. We dont have cable or dish, no landline phone,no vacations, no fancy car ( we own a kia rio ) I shop cheap, watch ads and bogo. We live with in our means.Fournatly housing is dirt cheap here and the costs of living are low.

Together as time and resources have allowed we have cut down trees, plowed dirt, re-routed water, put in water, made stalls, fences ect. The work is done by us together.We are not done yet but the dream is getting closer, or was. The drought this summer has caused a dramatic price increase in hay which is the primary food for horses. Last yr really good hay could be purchased for less than $ 4. This year $ 10. Farmers from Texas and Az are driving up and paying these prices. I went on Craigslist today and people are literally giving their horses away. Sadly due to local economy half of those horse will starve this winter and the other half will be sold for slaughter. The humane shelters are over filled and that is still no guarantee that the horse will have a forever home.

I am thinking of having my horses put down. It sounds harsh but the reality of is just that I really dont think these prices are going to come down and part of being a responsible pet owner is doing what is right for the animal. I am not a vegan but am well aware of how meat gets from field to plate and I just dont want that for them.Horse owner ship is a privilege and not for anyone. It takes commitment and sacrifice. It means getting hay in 90 degree weather and breaking ice out of water buckets at negatives 10, its walking in circles for miles cause one ate too many apples and has a belly ache or staying in the stall in a lawn chair all nite cause the old one is shivering and running a fever. I think to own the same horse for over 30 yrs means I must be doing something right. Now Im a bit blurry on right and I cant see my life with out them and I dont know what life will be like.

The night great grandpa died and the clock

Great Grandpa Bill was my Grandfathers dad. He lived with my grandparents . I don't know how old he was just that all of my really early memories have great grandpa Bill in them . I can clearly see his haunting blue gray eyes and his large gnarled hands and his faded blue over-alls with all those many pockets. I don't remember his voice or if he smoked but he always had a candy for me in one of those many pockets. I can see him after he was house bound calling me over to his rocking chair and asking if I still like horses. I see me nodding yes and him handing me a homemade horse on a stick.
What I remember most is the night great grandpa died .I was about 5 and had never experienced death first hand. You see great grandpa slept in the bedroom of the living room and when I stayed there I got to sleep on the living room floor. It was so soothing to be able to hear his steady gentle snores every night.
Great grandpa died at home in his bed. The curtain was closed and calls were made over the party line and soon people started to arrive. I was finally told just what had happened, that Great grandpa had died and he way going to be buried in the ground and would be with grandma Mary. Grandpa wash washed and changed and laid out in his finest, just like the worlds oldest groom on his wedding day. On the table in the living room. Where I sleep. I was told to touch him, he is dead,he is sleeping for eternity. He is just cold and soon and soon will be placed in a wooden box and placed in the ground forever. Finally it is time to go back to sleep. I was allowed to sleep in bed with Grandma. I can't sleep. I'm scared, I'm terrified.
" Grandpa Bill IS NOT DEAD !" I scream.
" Yes he is."
" No he is not."
I am coaxed in to putting my hand into the lapels of his jacket to feel his chest. I can still hear him breathing. Inhale in exhale out, in and out, in and out. Slight wheeze in, slight wheeze out. Soft,gentle, rhythmic snores.
" I can hear him, he is not dead. You can't bury him. I won't let you!" I scream at my grandparents.
Finally Grandpa comes and sits where I am at and listens very hard. He hears it too. He looks up at the wall at my grandmothers pendulum clock. He stands up and takes down from the wall and all is quiet.