Today is my deceased sons birthday. I was terribly ill with what was diagnosed pre-eclampsia, but was more than likely a pheo. He went to nicu where things went from bad to worse and I went to critical intensive care for 3 weeks. Today is a somber day for me. I miss you Mark and so wish we both would have had different outcomes.

Here is a short video from some of the best experts that I have seen explaining what I have and what it does and just how dangerous it is. http://player.vimeo.com/video/44491869 A special thank you to all of you in the video and to the pheo-para alliance and pheo-paratroopers for putting this together.

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.

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

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.

 http://www.indiegogo.com/njm2425

   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

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.