Friday, March 30, 2012

An April Challenge

I received an email today about a blogging challenge for the month of April, on health-related items. After downloading the 30 questions and reading through them to see if I might be able to do it, I decided to go for it! Here is a copy from the sign up email of what the project is, and what I'll be doing, and maybe you'll want to try it out yourself??

Hey everyone - I just wanted to tell you about a new activity I'll be doing this April. The Health Activist Writer's Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. I hope you'll join me in writing every day about health. It's going to be a lot of fun and I'd love to see what you have to say about each of the topics, too. All you have to do to join is sign up here: and you'll be able to start posting once April rolls around. Looking forward to writing with you!

Thursday, March 29, 2012


I've been feeling flustered the last several days. Things are stressing me out, and they are the same old problems I've been dealing with for a long time. I don't feel I should really be complaining, because I know there are people worse off than me. I am just trying to be thankful for the things I have, the people in my life, and my relatively good health right now.

My ARGH moment of the day, however, has to do with part of  my ride home from rehab earlier. I usually like to drive through the campus of my alma mater when I drive home from rehab (or Lewiston for that matter). I realize, as a former student there, that I need to watch for students and faculty walking around as I drive through. I also realize that as a driver (and a former student there who used to drive around the campus trying to find a parking spot), that I must drive very slowly. Like maybe 20mph at the least. I usually drive slower than that! Because I realize, as a former student there, that some students don't even pay attention to the road when they are crossing it.

Like today.

Miss Pink Sweatshirt decided to step out right in front of my car. Right AFTER she stopped at the sidewalk, looked at me as I was slooooowly approaching her area, waited for a few seconds (which I thought meant she was waiting for me to pass!), and then stepped right into the road only a foot in front of my car! I had to slam on the breaks! Miss Pink Sweatshirt didn't even look at me then, only kept walking while playing around with her phone. I was so irate!!!


I should've honked the horn. I could've rolled down the window and yelled at her. But no. I'm not that kind of person, and I just ended up being quite pissy for the rest of my drive home, which in turn made me kinda pissy at everyone driving around me. lol I'm glad I'm home and off the road for the rest of the day!!

Saturday, March 24, 2012

Spring Has Sprung

This past Tuesday ushered in Spring, and yet for three days in a row, it felt more like summer! We had seven straight days of weather that shattered previous records for March! When the weather is supposed to be more around the 45 degree mark, a high of 81 degrees is just so strange and wonderful at the same time! Unfortunately, now we are back to spring-like temps, and today has been rainy so far. I'm glad I wasn't tempted enough to take the plastic down from the windows. Something tells me Mother Nature might still have a white surprise in store before the warmer weather kicks back into gear!

I've been feeling tired lately, and yesterday and today my lungs don't seem to like the weather changes. I'm a little more short of breath than usual, and it gets annoying. I'm still trying to keep up with exercising, though! I did my two days at pulmonary rehab, and on Wednesday I went for a short walk on a trail with K. where he lives. It was really nice since we walked right along a creek. I just love being near water! I also counted grocery shopping as exercising, which I did before I went to K.'s house. It's not necessarily being in the store buying things and then putting the groceries in the car. It's after that, when I need to somehow get all those bags into the house. I can usually get a few bags worth of groceries and be ok, but Wednesday, I had at least 10 bags of stuff that needed to go into the house. I slowly got everything inside, but talk about tired! My heart rate was up, and I needed to rest a couple times. So yes, for me, that is exercise!!

Last night, my mom and I met my friend, Dee, at the cheap theater to see The Artist. It was the silent movie that won Best Picture at the Oscars this year. We had wanted to see it, but it left the more expensive theater in a hurry it seems, and we never thought it would be at the cheap one. Lucky for us, it was! The movie started at 7, and let me tell you, I just LOVED it!! I can't honestly remember ever seeing a silent movie before, other than clips. This movie was just excellent. And it makes me want to find other silent films to watch! When the movie finished, I waited on a bench in the lobby while Dee and my mom went to the Ladies Room. I saw on the billboard for the list of movies that another movie  my mom and I had wanted to watch, The Departed, would be playing in about 25 minutes. When they got back from the bathroom, I asked my mom if she would want to stay and watch that as well! After much debating, we finally decided, what the heck, why not?? We were there anyway, and had nothing else to do! Sooo, we also watched The Departed! I thought it was a good movie, and George Clooney did a great job. But I honestly have to say, I love The Artist way more!! I really do recommend it if you'd like to try a silent film! It was a very nice evening with my mom, and I'm glad we decided to go for it and see two movies we both had been wanting to watch for a long time!

Friday, March 16, 2012

Hellooooo Summer??

I dreaded winter coming this year, but that is not anything new. I dread it pretty much every year! So as usual, I was totally prepared to be locked inside the house for days on end for much of the winter months. I often skip rehab when it's bitter cold since I hate to be outside, and it hurts to breathe. I had all my pairs of long underwear ready for wearing daily. I was ready to double up on socks since my feet constantly freeze!

Instead, I've only missed rehab due to the weather twice. I've been able to be out and about every week almost. I've been wearing the long john's sporadically. And surprisingly I've only really needed one pair of socks every day. A major snow storm for this area just hasn't happened. I haven't watched my dad shovel the sidewalks constantly, and unfortunately for him, he hasn't had to plow that much for people. It's been one of the warmest winters I can ever remember. Oh sure, we've had some bitter cold days, but they have been few and far between. And I am not complaining!! I'm really glad this winter hasn't been awful!

In the middle of this week, a warmer weather pattern started that should last almost til the end of March. The past 2 days, it was in the 60s. For the next several days, it should be in the 70s. SEVENTIES. What??? This is just not right! I mean, I love it, yes!! But, I don't know, it's just so darn early for this weather to be happening! It's making me want to rip the plastic off all of my windows so I can open them up, put down the screens, and let the house get some fresh air!! But no!! Something tells me that if I do that, I'll jinx everything and we'll end up with a freakish spring snow or something!! lol  The one thought I know a lot of people are having is: What the heck is summer going to feel like???

Has Anyone Seen My 60 Minutes?

Daylight savings time ended this past weekend, meaning that most everyone lost an hour of sleep. As much as I love the fact that we've gained more sunlight time in the evenings, trying to get used to those missing minutes is something I find really difficult. I've been so tired this week, trying not to nap for very long, but that doesn't always work. I'm hoping this feeling will end pretty soon!

My weekend with K. was so nice. I can't believe how comfortable I feel with him, and that's been ever since we met. The oxygen situation worked out fine. I still wish he didn't have to return the machine, though. Considering they still haven't said anything to me about the one I have here, I don't think they would've missed the one I had used at K's. Oh well, I guess! At least we know that if I want to stay at his house again, we can arrange it so he can pick up a machine!

Friday, March 09, 2012

A Little Weekend Getaway!

Ever since I've been on the liquid oxygen, I haven't been able to just decide to go somewhere for a few days or a week or whatever because I no longer have a concentrator to pack in the car (or van) and go. It's been the most frustrating thing to me! When I had my little fiasco a couple weeks ago with the liquid tanks, I was given a pediatric concentrator to use, but it only goes up to 2 liters, when I'm supposed to be on 3. I haven't given it back, and so far no one's asked for it! I'd like to hang on to it to make a "trade" if one of the o2 guys can do it, but who knows when that'll be. I guess I can use it if I need to, but I really would like a different one if it's possible! Maybe some day I can get that figured out!

Anyway, about a month or so ago, my friend, Renee, announced plans to celebrate her 40th birthday. She wanted to go to a club in downtown Buffalo, and was hoping I'd be able to go as well! I asked K. about going, and he said sure. I also asked if it was ok if I arranged for a concentrator to be at his house, so that I could spend the weekend instead of having to worry about driving back home. He is closer to Buffalo than I am really! He said that would be ok. A few weeks ago, he realized the he actually works 2 minutes from my o2 company! So, he picked up the machine today on his lunch break. Then he asked if I'd like to test it out tonight, so now I'll be spending the weekend at his place. I'm so excited!! I mean, might as well get some use out of it if we're going to have it for the weekend. lol  I keep trying to figure out what would happen if K. doesn't return it. Would the company even know?? Considering no one seems to be concerned about the one I have here, maybe it wouldn't be a big problem?? Who knows!

Oxygen stuff has been kinda bugging me lately. I wish I had an easier way of being out and about with it, especially because I think this summer might be a busy one if I want to do stuff with K. My liquid o2 doesn't last all that long, and if I am out longer than what my Helios can hold, then I either have nothing and have to go home, or I have to remember to bring B tanks, which I used to have all the time before the liquid. I know there are portable oxygen concentrators, some which are rather small, but I don't believe my insurance will cover both that and liquid. And trying to buy one? Well, I don't have a few thousand dollars laying around!! It's all so frustrating sometimes, and one of the things that irritates me the most about having PH! I wish I was one of those PHers who didn't need to have supplemental o2. Or if I had to have it, I wish it could just be at night. I know my situation is a little different than most. No matter what amount of o2 I use, my saturation levels just don't go up that much. So I am able to not have it on for awhile and I don't feel too badly. But after several hours, I definitely know I need it back on. I'd need to have the o2 around no matter what. I almost feel trapped sometimes by this situation. I'm hoping I can figure out more what to do about it soon!!

Tuesday, March 06, 2012

Childproof Irritation

I have been taking medications since I was 2 years old. My oldest med is digoxin, a heart med which helps keep the heart healthy and the rhythm function stable. Since I have a congenital heart defect, my doctors way back then thought this med would help to keep it functioning better. I used to take the digoxin by dropper, and I still remember loving the taste and wishing my mom could give me more when it was time to take it! Ha! Eventually I moved on to the tiny pill form of digoxin, and that meant the beginning of childproof caps. I never worried about that for a very long time because my parents (well, my mom  mostly) gave me my pill to take every day. This also included pills like antibiotics and such for the times I was sick. There were a LOT of those times for me growing up. Being sick sure stunk big time!!

Years down the road when I began to keep track of taking my meds on my own, I struggled with trying to open the stupid childproof caps on the bottles. Of course, I would try and try to open it, but if I couldn't, I could just hand it to my mom or dad, and voila! It was opened, and I could take my pill!

This all changed when I moved out on my own. If I forgot to say something to my pharmacy about having a regular cap instead of the impossible childproof cap, then I was in trouble! I started making it known at my local pharmacy that I wasn't able to open up most of my meds very easily if there was a childproof cap, so they finally started to put it into my records that I needed a regular cap. I'd say about 95% of the time, that is what I receive when I pick up a prescription.

I receive my two PH meds from a pharmacy called Accredo. I get a call each month for refills, and I have to provide a bunch of information. My Tracleer comes in a bottle with a childproof cap, but ironically, it's the only one I've never had a problem with, and that's amazing!  My Revatio is a whoooooooole other story. It has to be about the worst childproof cap I've ever encountered!! I usually spend at least 15 minutes trying to get the darn thing open. I have hurt the palms of my hands trying to get it to open. I admit I've tried using knives to pry it open. One time I wished I had a chainsaw to get it apart!! I've sworn up and down and I've even shot it across the room in utter frustration. Sometimes if I leave it alone for awhile, I can open it right away when I try again. It's as if I loosened it up enough during the first round of irritation that it just opened at will on the second try.

You would think that I would've asked Accredo by now if it was possible to NOT HAVE A CHILDPROOF CAP ON MY REVATIO?????  HELLO????

Soooo, today while I was doing my Revatio reorder, I finally remembered to ask to talk to a pharmacist about this!!! And guess what?? The pharmacist told me they'd make a note in my file to make sure I would always get a regular cap when my Revatio comes every month. YIPPEE!!! I'm really very proud of myself for actually asking about this! Let's just hope when it arrives next week that the memo wasn't ignored, and that I can open up the bottle peacefully and calmy and without injuries!!!

Saturday, March 03, 2012

March Madness

March seemed to arrive quietly on Thursday, with weather on that day and yesterday that was decent and abnormal for this time of year. I ventured out yesterday to run some errands because I knew from weather reports that we were in for some big time winds for last night and all day today. And wow, they weren't kidding! My county apparently had some of the highest wind gusts clocking in at 69mph! I had a horrible night sleep listening to those winds hitting the house. I kept jolting awake every hour, and wasn't able to go back to sleep very well, and by the time I drifted off again, another wicked gust would wake me up! It was awful! The winds didn't get any better all day today. I'm glad I didn't have anywhere to go! They are finally starting to die down tonight, so maybe I'll be able to get a much better night's sleep!!