Wow my first entry to PHCentral. Thanks Mimi for the invitation. Of course I haven't much to say now the pressure is on plus having a PH day with fevers and pain and headaches. Not the way I wanted to start my new diary. I want to thank everyone though. My Facebook collection of phriends has just boomed since I decided to make it my lifes mission in early January. I know some of you have seen me hand out Periwinkles and wonder what they are. I said in one post it was something I just make up one day and I just try to recognize someone who did something special or had a bad day, a good day did something good for another phriend so no fixed rules just what catches my eye.

I look forward to making some more entries and now i get to read Karen Water's adventures with Flo, yeah.

Love to all

Stu

 First I want to apologize for the time between entries.

Today I wanted to first off start with some "Periwinkle Awards" that I posted last night:

Tonight I want to give a special Periwinkle to Mary Jacobs Sisk for creating the new group Phenomenal Caregivers. Mary's husband David is obviously the recipient of some fantastic caregiving and I think those of you that have Caregivers should join this group and shout to the hills how much you love your caregiver.

Esta noche quiero dar un Perwinkle muy especial a Mary Jacobs Sisk por haber creado un nuevo grupo: PHenomenales Cuidadores. David esposo de Mary es obviamente el que mas cuidados recibe y pienso que aquellos que tienen quien los cuide deberian unirse a este grupo y gritar muy fuerte todo el amor que sienten por ellos. Thanks to some of my Spanish speaking friends for helping out with my translations. Adriana Posada of Mexico City sometimes has these translated and in my inbox before I can even finish the English version. 

Well I guess I had better explain a few things from my comments off my last post.

 Well this one has been a tough week . First there was Sunday's vote and a lot of animosity flying back and forth on Monday and Tuesday. I hate to see the arguing and what really got me was the preaching we got in the US from pholks in countries with socialist medical systems that are currently broken. We American's will get to the answer and I am sure when it is done no-one will be happy so it will be about right.This whole week has been a weird one when it comes to my health also. I over did it in Tuesday and Wednesday while filming at church and then having Bible Study after filming Tuesday and then a course on Photography as a business on Wednesday night. That led to 13 hours of sleep each night then last night PH Chat and another 11 hours of sleep. Each day starting with headaches and no energy. A little discouraging but as my hero Winston Churchill said "When going through hell keep going". I can't seem to shed the headaches and believe it is allergies plus my recent Flolan dosage increase. I think I need one more 1/2 a nanogram and then my SOB problem should be history.

 Kudos' to Alex Flipse and her new alter ego  PH Sickpics on Facebook. A few of us are contributing pictures of various pictures and descriptions so new patients, and veteran's, may see different procedures, new supplies, new dressing's etc. I am also planning on setting up a photo shoot of my mixing Flolan and changing my dressing with the new Tegaderm 1655 dressing. 

  In my off hours I am a photographer and now that I am on disability I will be looking to go pro to supplement my income. I was supposed to go on a shoot this weekend up in Oklahoma but it was cancelled so time for some shots at home. I may ask my friend Brent to help with the lighting but try to make it as professional as possible. Of course these are not medical advice just for informational purposes only. I have 2 sets of Flolan on the table waiting for Tripod and Light setup and I used a Canon 40D as my main tool.

I have got some good feedback on the Facebook photo's and have other procedures on my computer waiting to be found. I have over 40,000 pictures on my hard drive and a few thousand negatives that aren't scanned yet. If you want to see some pictures of your friends from the Houston convention I did post some on Flikr and my name on there is lapleader. Lapleader comes from my past when I used to race cars. Something I dearly miss but I occasionally get to the track to take pictures.

On the plus side Rachael Wakefield of Ashton, Cheshire got her lung transplant and in the last couple of days has made a real step forward. Tonight she was to be on BBC Northwest and has done a terrific job in getting the word out about organ donation. Rachael's message hasn't just been covered in England but all over the world and I want to personally thank her. The thing is I was born in Ashton also before we came to this country many years ago.

Well I will work on my projects and I look forward to being a little more regular with my posts. Sorry if we disagree on the Health Care plan but let's just say we disagree and move on to make life for other PH patients better everywhere.

Take care all

See you in June

Stu

Another post and a couple of upset people from last post. I just want to say to those that I didn't post any opinion directed at any one person and that I thought I was able to express a general opinion or observation  as the mission statement of PHCentral is :

Mission Statement

The PHCentral Mission:

To be the definitive internet resource for PH-related information 
For Patients, Caregivers, and Medical Professionals

•	Guiding newly-diagnosed patients to answers and support
•	Presenting PH news from the popular media
•	Offering a forum for an array of opinions on PH topics
•	Providing practical tips and information for living with PH
•	Connecting patients, caregivers, family and friends with shared interests and talents
•	Gathering, critiquing, and linking to potentially useful internet resources and publications
•	Defining the roles of organizations within the international PH Resource Community: groups which offer support, education, advocacy, treatment development, or research toward a cure
•	Listening to Your comments, getting You involved, responding to Your needs

The Healthcare system itself has to fall in there somewhere. I would hope that some of the other diarists would express an opinion too since it is such an important part of dealing with PH.

On to better things, this week in association with Alex Flipse I have posted some more pictures on PH Sickpics of my last Hickman replacement and also some dressing comments and pictures of dressings that I have found to work week with me and my sensitive skin. I will be working on photographing my next dressing change and Flolan mixing procedure that I use. I did load my pictures of how I have my supplies stored on Facebook this week also.

Well today I bought my ticket for the flight from DFW to Orange County and will  be arriving on the Thursday of the conference. Because of time changes I arrive only 2 hour after leaving Dallas and that gives me plenty of time to arrive and get checked in at the Hotel. Since my brother is getting married on May 8th I have decided to not extend my stay in LA so I will be leaving Sunday lunchtime. This should be an interesting conference as the others were also. I am particularly looking forward to participating in the research room and will be busy running around during the convention itself.

The Flolan headaches have met the sinus headaches of spring in Texas. Just no relief!! Basically from November until May is a bad allergy season for me here and with PH your energy levels just keep dropping. I don't know what others do for the allergy/sinus problems but I finally found some relief this year. I know when I say what I do I will create another uproar so I will save it for the next time I am on line.

Tomorrow I think I will call my PH Doctor and let him know I am still short of breath and see if we can go up on my Flolan dose a little more. Hopefully soon I will also get to attend my first Dallas Support group meeting.

I'll see if I can figure out how to post more pictures on this website in the future.

Well all for now I'm going to watch the Australian Grand Prix from 1:00 this morning my time. Thank you DVR.