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.



Colleen said...

Wow, you certainly did catch us up on your happenings!! lol I'm glad you are doing fairly well, I just hope that cold clears up soon and then you'll be doing even better!!

Why did they turn down the o2 on you during your walk?? Just curious!!

Colleen :)

Jen said...

That will work..LOl usual that wore me out;))

Now I see why you have not updated...Busy little bee...

Hope your cold gets better..I am sure the Zpac is helping ...

Great job on the 6 month visits now!! Woo Hoo:))

Take care and try and rest ...until the next blog...


Wendy's Mom said...


Thank you so much for doing an update. As always I loved reading it. You just know how to write things to make them exciting. Wish I had that talent. LOL!

Sorry to hear about Tom's Brother. I know it was a sad thing, but also is good that people got to see each other. I hope that they do a reunion, for I do think it is sad that people wait until someone else passes away before you get together, unless you are my family of course. LOL!!

Keep us posted!