Wednesday, September 02, 2009
To a new beginning
Hello my name is Jackie. I was recently diagnosed with PH have been dealing with the symptoms for sometime. It seems like things are changing for me faster than i can adjust to them!

Sunday, September 06, 2009
That has not happened yet!

It looks like the doors have opened up for me – doors with question marks behind every one of them!  I am trying to figure out how to start this diary, so I will start with when the doctors diagnose me with Arnold Chiari’s.   I was having severe headaches, back pain, and my legs were bothering me when walking twenty to thirty yards.  I had to set down and rest, so I went to the doctor, and they ran test and came up with nothing. Then I decided to a chiropractor, to see if there was anything he could do for me to relieve some of the troubles I was experiencing.  I explained what was going on, and he did a few massages, and said he wanted to have an x-ray done on my neck and skull, but would not do any adjusting, until then.  He found the problem, and immediately made appointment with a neurologist.  It was concluded in her plan that a surgery to remove part of my skull, a vertebra, and a small portion of the lower part brain tonsils might ease the headaches and back pain, but no guarantees.  The thought of removing part of my brain was not even an option. Therefore, I told her my decision was not to have surgery. Conversely, she let me know that in a couple of years, a wheel chair might be a part of my life, and I said, “When I get there.  I will make that decision.”  It has been 15 years, and I am still walking - not always easy, but a whole lot of talking with God.  Looking back, I have had chest pressure and weakness off and on this whole time, actually long before!  I had my heart checked, and it was ok.  I was told that I had a heart of an athlete. Therefore, I figured it must be something to do with the Aronld Chiari’s because the doctors around here really did not and still do not know much about it Arnolds Chiari’s or PH.  I do not like going to the doctor anyway, and I figured I would be all right.  I am just getting older, and probably needing more exercise is what I would tell my wife, and she would say, "I don’t think so, Jackie; this is not who you are.  You are one of those people who has to be doing something, continuously.”  I just cannot sit still and even watch a movie, unless it is late at night.  Well, a year ago, my chest pressure seemed to be getting worse and breathing was getting harder when I would do my normal activities, so I went to my medical doctor.  She found a bleb on my lung and said that she would keep a check on it, and that it seemed to be common in slim people, but if things didn’t get better soon, she would send me to a pulmonary doctor to look into it.  A couple of weeks later, I was back seeing her, and told her it seemed to be getting worse.  She set me up an appointment with a pulmonary doctor in Mountain Home.  He ran several tests, and that was when things start going the wrong way for me.  He came in and told me the bleb was not the problem; that he would like for me to see a pulmonary specialist.  He felt like it was pulmonary hypertetion because my pressure were too high.  He began naming different pulmonary specialists that I could go to, and once I made the decision where I wanted to go, he would schedule an appointment.  But he still was not going into detail about what ph was, so I figured it was something the doctors could fix, no problem.  I chose Little Rock because it was closer for me than any other place; again, not looking at PH as a problem, thinking that it could be fixed, and I would be up and going in no time.  When get there, my wife and I, the pulmonary specialist looks at the test results the pulmonary doctor in Mountain Home had sent to him and ordered a few test of his own.  After a few trips back to Little Rock to get the results, the doctor decided he wants to wait until things get worse before he went any further. My wife and I left the doctor’s office confused, but figured it must not be too serious or he would have done something.  More time had passed, and I was not getting any better, so I called my pulmonary doctor to tell him I wanted a different pulmonary specialist, so the nurse said one was visiting from Missouri on a ninety-day visit, and that if I could get there tomorrow, I would be able to see him, and would not have to drive to Missouri. That sounded good, so we went, and he had me do a finger oxygen test, and had me walk down a hall, and said I could wait for a while until things got worse, and that the door was open if I needed them.  Well things are not getting better for me right now, so we started looking for answers and found PHCentral, and was shocked at how serious this was, and angry, confused, and sad and feelings I cannot even describe.  I am disappointed that a doctor would tell someone they have something this serious and not even go into any detail about what it is and to just let them walk out of the office and find out on their own.  The things that are going on in my mind are, not feeling sorry for me, but hurt because I have a wonderful wife and three beautiful children, and this will have an effect on them, too; the things we do, how long we have to do them in, even in some cases, from what I read, the medication, the way it has to be done, and cared for, the cost of it, and that is not even counting for hospital time!  This is all things that have an effect on all five of us - not just me.  On top of all that, there is me trying to adjust to having PH, my body is changing!  I went from being able to do things that I now realize I took for granted, what I consider normal day things that made me who I am, like getting the wood in, hay, and taking care of our small farm.  I had to slow down a lot when the Chiari’s hit me, but I adjusted to it, and found that honeybee stings helped ease the migraines and muscle aches, but with PH, I cannot seem to find a pattern with it.  I am lost and confused at this point.  I keep thinking I will wake up one morning and everything will be alright. That has not happened yet!  

Sunday, September 06, 2009
I would like to add

A few more things I would like to say. First, I would like to thank the people at PHCentral, especially Mrs. Reeseman for encouraging me to keep trying to find a PH specialist to treat this condition for which I have, and encouraging me not to let it go.  However, at the same time it is scary…  Second, part of me wants to think it is just going to go away, but as I read about PH, and how it changes your life, I think, well, if I don’t go any further with this on information, maybe I can just keep on living the way I am, you know!  My mind keeps thinking, if I do not know any different, I won’t have to take the medicine.  That is not how it works, though, but I still think about it anyway.  I just do not want to change my life.  I am happy with it the way it was before everything started changing.  I have a sister that I have only met once and that was twenty years ago for a couple of hours, and the roads of life took us a thousand miles apart with no contact, until recently.  We have been talking on the phone and IM, and trying to get to know each other and finding out how much alike we are, trying to figure out how we can meet and spend some time with each other.  I have mentioned that I was not feeling good, but no big details and not sure I even know how to start a conversation like that with her…  And my other brothers and sister, the ones I grew up with, do not even here a normal conversation, so mentioning PH to them would be a waste of my time and energy.  Not meaning that in a bad way, but it is truth. Like many people, no one has time to really listen they just look at you and go on.  Dealing with this PH, mind wise, is extremely hard; it is like everything has turned upside down, and now “I” have to put it all back together in a different way, but still make it work because life goes on anyway and not feeling good doesn’t stop everyday things.  Normal chores that I enjoy, I am now start find ways to shorten the trips whether I realize it or not, like going to the mailbox, for example, use to be a nice walk, but now I catch myself waiting until I am going somewhere and stop in with the vehicle, so I won’t have to walk back up the slop, or having to take a nap in the middle of the day because I am drained, and that aggravates me because I am missing part of the day, when I could be doing something! And going somewhere, the ride there and back makes me very tired, and I enjoy just riding around and looking at all the wonders that God has for us to see.  I guess it is just all this stuff even though it might not be that big of a deal, but when you put it all together and it is happening to you it is important…  We just don’t realize it, until it start changing so fast on us.                

Thursday, September 10, 2009
Breathing

Today, I have felt alright; even though, it has rained all day here. it was a nice day.  My breathing is better, today, than it has been for the last couple of days.  Lately, I have been short of breath and real tired and at times my chest felt weird.  It made me feel light in the chest or something, as if my heart was out rhythm, possibly even too fast. I went to town to day and was not as tired as I usually am after a ride.  It is a 60 mile round trip to go to the store where I live, but some beautiful country, so it is ride to enjoy! Traffic is not bad until you get there, and after work traffic is bumper to bumper! So patience is a good thing to have on your side.  My pulmonary doctor appointment is the 23 of this month and that is getting close, so things are looking up. I am hoping the doctor will be able to set me up with a PH specialist close to where I live. I have been on the internet and that might not happen because I have not found any listed but maybe there is still a chance there is a place within a reasonable distance. I have made it though the anger for a while and set on making the best out of it.  I have a lot to fight for and not in that bad of health.  There is always the possibility this PH will just stop for awhile or just go away for good.  That would be all right with me, but whatever is in store for me tomorrow, I will face it and keep on going.  GOD blessed me with a great family, and that is all I ever wanted to begin with, so enough with the complaining and just live. We sometimes bitch about today and have no idea what waits us tomorrow.  The doctors working with us PHers, today, might prevent the babies and PHers of tomorrow from dealing with this. And with the economy the way it is we are keeping people in jobs, so that means we are helping.  I could think of other ways, but you make the best of what you got.