Saturday, October 25, 2008

Well, darn it all anyway

I know, don't fall over -- twice in the same day but this really deserves a note. Today was "Trick or Treat" day in my little community and darn it all anyway, I missed it. About 5:30 my door bell rang (kitchen door) and there was a hobo with a walking stick and a space man. Together I heard, Hi Grandma -- Trick or Treat....

Trick or Treat is from 4 to 6 pm so it's still daylight outside. You are to leave your outside light on if you want treaters, if not, they will walk on by. I was really looking forward to this special day. For 5 years I couldn't see all those ghost, goblins, witches, princesses -- all those special people who come and gather up treats. Being on the second floor just made it impossible to answer the door so the first floor would have been a happening thing AND I MISSED IT. Dang!!

I told the boys they are going to have to let me know when these special events happen -- I think I'm a kid at heart because it just gets my juices all stirred up with these special days and I usually get "dressed up" too. The boys were great, they shared their candy with me so I had a special treat too. Hope I didn't miss the parade.

Hugs ~ and smile, it's contagious

OHPA <-- that's my disguise *;*

Whoo Hoo

We had our October Mercer meeting -- it went very well. The Assistant Deputy Director on Area Agency on Aging started off with health programs that are available in Pennsylvania. We are very fortunate -- we have the PACE and PACE Net programs and my understanding is a lot of the other states are working on getting them. It's an insurance program, will help with that infamous donut hole and help with many other issues. We were told of a Caregiver program that is also available, they will actually pay a Caregiver to mix your meds, help with your hygiene (giving you bath, etc) and some other essential things you may need to have done. I guess the government, whether it be State of Federal, figures it's cheaper to pay a caregiver than to pay for a nurse to come to your home or pay for you being in a nursing home. Go figure and I must look into that one.

Sam speaks to the Mercer Group every year and has a wealth of information to pass on. Most every county has an office on Area Agency on Aging and they not only help those who are aging but those who are disabled. He also hosts a radio show every Friday and once a year, usually November for awareness month, Betty, the Support Group Leader and I, Co-Leader, along with a sponsor (we rotate those) get to be on the radio and talk about Pulmonary Hypertension.

Next on the agenda was our Congressman but due to a conflict with the political race, he was unable to attend. He did however send his D.C. Legislative Aide, Kelly, whom I have worked with and talked with for several years. Kelly has been able to attend the PHA Legislative Luncheon's in D.C. and has always been there for me when I have one of my many issues -- usually it's the Pulmonary Hypertension and Research Act and asking for co-sponsorship of that bill. Congressman English has always been gracious enough to co-sponsor the bill for us and he also has been there for me with some of my other issues.

Kelly spoke to us about HR 6568 and how when presented to the House it passed without question. She also talked to us about HR 6331 -- the Medicare/Medicaid bill -- this one, although a different number, comes up every year and is amended as needed. She explained how important it is for us to call, write or email our politicians -- everything is logged in and read and passed on to the Representative. Those politicians do listen to us. So now we need to call our Senators and get them to co-sponsor HR 6568 -- it still isn't too late to call their D.C. office and their number is usually listed in the "blue" pages of your phone book.

That was on Thursday -- Friday morning my local State Representative had his annual "Expo" for his constituents. His area covers a few counties so has has 2 or 3 of these. Here again, a wealth of information. Tables for health spas, visiting nurses, State and Federal Insurance programs, educational programs/scholarships, 911, AARP, State Game Lands. A full spectrum of almost anything you could think of. Accredo had a table so Betty and I shared half of it and we set up with brochures and ran several CD's for and about PH. I didn't even get a chance to visit all the tables but I did come home with tablets, pens, pencils, nail files and even a mini flashlight; of course many brochures on all the whatevers that were there that I did get to visit. I would guesstimate about 50 vendors were there. I did make a point of stopping at the County Public Assistance table.

Now for the whoo hoo part. I saw many folks I haven't seen in years and this one man came to our table and said his doctor told him he has "some" pulmonary hypertension so he asked what it was. We of course told him. I mentioned that he looked familiar and asked his name, well whoo hoo, we have a mutual friend and we haven't seen each other in proably 15 years. Small world. He mentioned how he is becoming more and more sob. I gave him my phone number and told him to give me a call -- darn he just missed the SGM by one day. I then thought, why didn't you get his number... dah, another PH moment. I went out and looked for him -- now mind you, there were a few hundred people there by that time. I couldn't find him BUT he came back with some more questions, I got his number, also told him about the Symposium that CCF is having in November for Awareness Month and he is hoping he can go. He also goes to the Clinic for another health issue. He called me at home in the afternoon and I have mailed him info about PH -- his computer is down. It really makes you feel good when you know you have been able to help some understand the seriousness of this dastardly disease.

Well, I could write more of some of the happenings at the Expo but I'll save those for another time. Seems I write a novel when I want to keep it just short and sweet. Oh well, you'll have this.

Hugs to all ~ and smile, it's contagious....
Merle ~ OHPA

Sunday, October 19, 2008

Happy Days -- those days that make you feel good

You know how some days are just better than others... well, that's been happening ~ not a lot but a little more often than usual. Had the Walk & Roll in September to raise awareness and funds for research et al for Pulmonary Hypertension -- it went well, didn't have as many as last year but with the price of gas (which now has gone down quite a bit) some were unable to attend. Gorgeous day and last year it was sooo cold. We had our salt-free wiener's, did our 6MW (for the cause) -- some games were played and lots of chatting -- a feast to beat all.

A couple of weeks after that was my regular check up -- told my doctor that I was doing pretty good -- well 'til I got there ;o).... they lowered my 02 for my 6MW and I had trouble finishing the course they way I like to.... I made it but it did a number on me. It was a little worse than the last one (and what would one expect without the normal level of 02), my echo was about the same, blood work showed I was still alive... He asked how I had been doing and with the change of seasons it's always difficult for me so I said: "doin ok on the whole but once in a while I feel crappy" -- he came back with "well, it seems to be a consistent crappy"... Guess that means I'm doin pretty good, not too bad either *;*. After this question and that answer, we were done and I asked when I needed to come back -- he said 6 months -- 6 months... I've graduated to 6 months whoo hoo.... I could hardly believe my ears. When I started all this with PH, I was going to The Clinic every 2 weeks for close to a year then I made it to once a month, then after a few of those I finally made it to every 3 months and last year I graduated to every 4 months!!! I've been on Flolan for 6 years and will be starting my seventh year the first part of January. This is a feat, a hoop-la situation -- don't really know what that means but it sure sounds good. I don't have to go back to The Clinic for 6 months la la la la la... I'll just be going to Cleveland for Support Group Meetings -- what a treat.

On October 10th, we had our Pittsburgh PH Support Group meeting, which was held at AGH and they put on a PH Jeopardy game -- lots of fun for that one. I announced about HR 6568 passing in the house (at the August meeting we signed letters to be sent to our Federal Reps) and that now we have to contact our Senators and ask them to co-sponsor the bill. We had about 60 attend that meeting. We really did have a good time, another Happy Day.

That weekend Tom's oldest brother died -- a not so happy day. Although it was nice to see family again, it is not always so under these circumstances. The death of a loved one is always difficult and very emotional. Somehow though, those memories bring back joy as well as tears. "Andy" was 85, he was Tom's big brother and taught him a lot and was there for him while growing up. The stories I heard -- some would make you blush, others would make you fall on the floor laughing. Andy had a bout with cancer a number of years ago and had it beat, or so they thought. His death was unexpected and he did not suffer -- and that is very important. His wife died 3 years ago and they will once again be together, they were an exceptionally close couple. We went down for the viewing and the funeral -- I called my 02 company and they went out of their way to accommodate me and my needs for that overnight trip. You know how we PHers live a "just in case" life now. We need this, just in case, we might need that, just in case -- the list goes on. It was nice seeing everyone again and it seems the comment was, we only see ALL of us when someone dies. They are thinking of having a summer family reunion as they did many years ago.

The day of the funeral I didn't feel too chipper, my ear was bothering me but I didn't say anything. I waited until I got home, called my PCP in the morning and they had an opening in the afternoon. I went to the docs office (a wow kinda situation that I won't mention here), saw the doc, I have an ear infection, scratchy throat, so he wrote a script for a Z pack and I was good to go. I came home and semi collapsed. I was beat and for once I was glad Tom didn't come over. He had some catching up to do.

Yesterday was Nolan's birthday -- my tradition is to call the kids on their birthday and sing that wonderful song to them... my voice is terrible but they politely listen and say Thank You Granma when I'm done. I use to have a pretty good singing voice -- that was pre PH.... now I'm lucky that I can almost hit those high notes ;o). Tom came over and we both took naps in our respective recliners. Another Happy Day.

This morning Kevin called (Nolan's Dad) and said they were going to have cake and ice cream and thought they would come to my place to save me from going out in the cold, especially when I was on cold meds. Sounded good to me ONLY my dining room table was still stacked up with 'stuff' from the Pittsburgh meeting, the trip to Altoona -- I'm a pilot... I pile it here and I pile it there -- but usually on the dining room table. A good excuse to clear it off, which I did. The family came -- we all sang happy birthday and Nolan just beamed... he was sooo excited -- it was his special day and another Happy Day for me. Oh, and they all got together and moved my table -- extremely heavy -- put my hand made braided rug under it (something my Mother made) and moved it back. Only been sitting there rolled up for a few months... Hey, I'm getting there... tomorrow is another exciting day -- blog to follow, maybe *;*

This Thursday is the Mercer Area PH meeting -- Congressman's aide will be coming -- he called and had to cancel due to another commitment in Erie. I know his legislative aide and I am excited about meeting her, we've corresponded often over the past few years about different PH political issues. Friday is a "health fair" of sorts put on by our local State Rep and that's right in town here, so again, I'm good to go, we're setting up a PH table. So glad I have that Z pack.

Well, Jen, I hope this covers the blogger catchup, fingers are getting sore I typed too much but I am way behind in doing this and I need to get back on track.

Hugs to all -- and smile, it's contagious.