Today is going to be better. The first Killdeer has arrived and Sunday a pair of Redwing black birds showed up. Now waiting on my barn swallows and hummers. Usually early May. I am still upset over yesterday. I thought doctors were to fix us, not judge us or tell us how to live our lives. I will call and complain, but will wait until I am not so angry over it. To tell me to change my life... How do you explain to someone ( I didn't bother) that for 15 of those years I have been tearing up my shoulders and hands and neck that I was physically taking care of another person. I was given this teeny tiny baby and told to take him home and love him until he died. No time frame was given. 15 years of carrying him up a flight of steps several times a day. 15 years of lifting him in and out of bathtubs. 15 tears of transferring him from the floor to his wheelchair, to his bed. At 5 years old, that's not too bad but but from 10 to 15 that is a lot of body to care for. When he died he was almost 6 ft tall and 140 lbs. I wonder if that dr ever tried to carry a 6 ft person up a flight of steps or to try and take them out of a wheel chair because they were having a grand mal seizure. There was no sense in trying to explain what a joy owning horses are. That to be with a horse is to to get away from the mental and physical stress of my life. That to be with a horse you cant be anywhere else except in the moment, right there at that time. That a horse can transform you and give you hope and a reason to get up everyday. That sometime in 1974 an old man gave a terminally ill girl her wish and told her parents that if that girl was going to die to let her live her dreams now . That what an escape a horse is 5 years later to an abused teenager or that 20 years later a battered wife. I could not put in to words what it felt like from 1999 to now to get in a kayak and leave Youngstown, Ohio and end up next to 3 rivers stadium in Pittsburg and a army corp of engineer telling you cant be there in a kayak. Or to submit a video and try to get on survivor in 2001. To have a goal of travelling down from Lake Erie to the Gulf of Mexico in that kayak. I want to put up a web page with a gps tracker and a live video stream " Where is Lori ". That when I turn 50 I want to walk the entire Appalachian back pack rail. I want these damn drs that see wal-mart on my insurance card to know that I spent 6 1/2 years of my life juggling kids and a sick child to go to school to be a nurse. That I gave up that career because of egos like his. That all of us that work at wal-mart are human and that the vast majority of us have college educations, but the job market here sucks. How do you explain that even though you have a major illness other body parts still break down just thru wear and tear and age and that those parts still need fixed. The goal is to keep me as functional and active as possible. These parts that need fixed are painful and are disruptful to my daily living. I am right handed and can not write,type,do dishes, fold clothes, brush my teeth with out stopping and shaking out my arm. Have you ever tried to brush your teeth with your non dominant hand ? Not fun. Good medicine should be if the current dr does not know, they should pick up a phone and actually find and refer to an expert. Or use the internet and at least educate themselves. There is enough information out their that we as patients has acess to, Im sure there is much,much more that the doctors can get to.

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.