Monday, February 27, 2012

Coffee Anyone?

I grew up hating the taste of coffee. I ADORE the smell of it, and often find myself in the coffee section of the grocery aisle sniffing in deeply. But the taste? Yuck!

Until recently. I have become a "coffee junkie" as K. called me the other day!!

Now, the biggest reason I have been drinking coffee every single afternoon for the last, oh, month and a half, is because of K. However, in the last several months, I have tasted coffee again and haven't found it to be too bad. It made me realize that the only way I had tasted coffee was when my dad had it as a kid, and I think he had his black. I definitely cannot have it black!! But with a little flavored cream (and there are sooooo  many out there!), I've been able to drink it, and like it a lot!

I got the cute little 4 cup coffee maker above awhile ago from It's perfect for me, and for whoever has coffee with me (mostly K.)! Like I said, I use it pretty much every day. I try to drink mostly decaf, but once in awhile I will have half regular/half decaf. And even more once in a blue moon, I will have full strength! I don't know what it is about coffee, though, no matter what kind I'm drinking, when the 2pm hour hits, my mind starts thinking, "COFFEE TIME!!" Now I know how avid coffee drinkers feel when they need to have their cup!!

One more little coffee story to add to this: Last Thursday I went out to Starbucks with a couple friends. When the gal behind the counter asked what I wanted, I said that I was a beginner at coffee, and I haven't yet had any outside of my house, and I had no idea what to order! So she kinda laughed and asked me if I liked flavors, which I do, and if I liked caramel, which I do, and that I could try a decaf caramel macchiato. I said sure, why not?? I handed her my Starbucks gift card that I've had since September and haven't been able to use yet, and she said the coffee was free since it was my first ever coffee at Starbucks! I thought that was so nice! So, I ordered a brownie! And, I thought the caramel macchiato tasted great! I guess I have expanded my world of coffee outside of the house!!

Friday, February 24, 2012

Oxygen Blues

Wednesday was just one of those days where everything seemed to go wrong. The worst part about it was that it involved the oxygen I'm supposed to use all day, every day, and the tanks that hold the liquid oxygen. I realized the day before that one of them wasn't working, and the other one had only 2 bars left. Considering that I get the tanks filled on Fridays, I knew I wouldn't really have enough to last until then! So Wednesday morning I called the office and told them that I now had no bars on the working tank, and no backup. That is the part that frustrates me the most. Ever since I got liquid oxygen, I have not been allowed to have a concentrator as back up in case something happens to the tanks and I'm stuck. Like Wednesday!! Anyway, the one guy doing the liquid o2 route called me back to find out what was happening, and told me he would rearrange his route to include me and that he'd be there before noon. Ok, sounds good. He got here and switched out the non-working tank with a much bigger tank that would definitely last until Friday. Ok, sounds good. Hours later, I realized that the o2 was very lightly coming out of the cannula (the thing that goes up my nose!), so I went to play around with the tank. I cranked it all the way up to 10, the highest it can go. Usually 10 feels like someone is sandblasting your nose hairs off because it's so powerful. But it was barely coming out! I knew something was wrong. I turned off the tank and let it sit for a couple hours, because I know sometimes that helps build pressures back up inside the tank for it to work again. I took a nap. Almost 3 hours later, I checked the tank: nothing. UGH. So I had to call the office again, only now it was after hours, so I left a message. The on-call guy called me back 10 minutes later, and I told him what was going on. He was in my area, so he came by. He decided to give me a concentrator. He brought one in, and guess what? It's broken!! He said some swear words (which, ok, that is so not professional, but I had been swearing most of the day anyway and by that time I didn't even care what he said! lol), and said that he had another concentrator, except that it was a pediatric one and only went up to 2. I'm supposed to be on 3. I didn't care at that point, I needed SOMETHING!! So he brought in the concentrator, and started setting it up. I mentioned how the other guy brought a tank that morning, and so he called that guy on his phone using the walkie talkie feature. Now let me tell you about swearing. The guy being called said a heck of a lot more swear words than the guy who was there, but like I said, I didn't care!! lol  Soooo, the guy who had brought the tank in the morning had to come back, but couldn't get there for another couple hours. I just used the concentrator in the meantime. O2 guy #1 got to my house around 8pm, and wanted to know what the heck I did to the tank?? lol He took the tank that had run out of o2 back to the truck to try to fill it, but since he had done all his runs all day long, he wasn't sure how much was left in the truck. He filled it as best he could, and it seemed to work just fine, so he left. However, 45 minutes later, I realized that once again nothing was coming out of the cannula. UGH!!!! The pressure gauge had dropped to zero, so that meant nothing was being pumped out of the tank. Thank goodness he never took the concentrator back! I ended up using the concentrator all night!!

I woke up yesterday morning after my alarm went off at 9, and took a look at the tanks. Since they had both been off all night for hours, enough pressure had built up in each of them so that they were now usable. I was also able to fill my little Helios so I could leave the house. THANK GOODNESS!! I didn't want to have to call again yesterday morning, because that would've meant I'd have to cancel  my plans while waiting for someone to show up again. I was actually able to enjoy my Thursday!! I went to rehab, visited a friend after, and then came home to change and eat something quick before meeting a couple other friends for coffee. Thursday was definitely so much better than Wednesday!!

Today is my normal Friday oxygen fill. I didn't want to miss whoever is showing up today to fill the tanks, so I haven't even showered yet. lol  I want to make sure that things go right today so I'm not stuck in a position like I was on Wednesday! So hopefully someone shows up soon since I do have other things I need to do today, outside the house! 

Tuesday, February 21, 2012

A New Week

The weekend sure went by quick! I spent it cleaning during the day on Saturday, and Saturday night and most of Sunday with K. We had a very nice time together. Mexican food and a movie was our Saturday night date, and playing tennis on his Playstation was most of Sunday's happenings. I wish sometimes we could spend more time together during the week, but oh well. I take what I can get on my weekends!

I'm still kind of in a state of shock that I'm actually going to Florida in June. Sometimes when I think of all the phriends I get to meet at the conference, I actually get teary-eyed. Some of them I've been talking to for years and years. I am very nervous about flying, but I keep trying to build myself up and telling myself I'll be fine. I'll probably not end up thinking about it until June comes around, and I'm sure by the time the day comes to leave I'll be trying not to throw up. lol  I might have to ask my doctor for something to keep me relatively calm so I don't freak out on the plane!

This weeks seems to be pretty low key for me. Other than exercising (either at home or rehab), I don't have too much officially planned. Thursday I might see a couple friends. I am HOPING that on Saturday I can finally get together with my 2 best friends and their kids. We've been trying to do this for almost two months now. I don't know what our problem is, but we can't seem to follow through with the plans. Something comes up, or someone doesn't feel well. So I'm crossing fingers that this weekend is the one!! We have Christmas presents for each other from 2010!! Isn't that crazy??? If we don't exchange them soon, I'm just going to forget about it!! lol

Thursday, February 16, 2012

One 2012 Hope Has Been Planned!

I applied for the scholarship to the PH Conference in Orlando in June back in November. I found out a couple weeks ago that I got a partial scholarship to go. After two weeks of trying to figure out how to get there and with who, I have finally gotten everything settled!! Today I was registered for the conference and hotel rooms, and I also have.....PLANE TICKETS!! Yes, despite the fact that I truly did not want to fly to this, I finally decided it was something I needed to do!!  I really want to go to Hawaii some day, so I guess I might as well start with a fairly short flight, right?? I am going with a phriend and her two daughters and grandbaby! So, I will not be alone on the plane. We're going down the day before everything starts, so if I'm not feeling well after the plane ride, I'll have some time to rest. And we aren't leaving right after conference, we're staying for a couple more days! So it's not only conference, it's a mini-vacation!! I'm just so excited and nervous at the same time, but I think (and I sure hope) the nervousness will get better by the time June gets here!

Sunday, February 12, 2012

Fallen Star

Yesterday the world learned that Whitney Houston died at the way too early age of 48. Investigation is continuing into her death, but so far foul play has been ruled out. In the last decade or so, she was more known for her strange behavior and drug addiction after marrying Bobby Brown, but it seemed as if she was trying to make a comeback in the last few years of her life.

But despite all the news on her behavior recently, I truly admired Whitney and loved her as a singer. That voice of hers...believe me, that voice was amazing to me. I am not a singer. I know I can't carry a tune. Does that stop me from belting out songs at the top of my lungs? No. Despite not being able to sing, that is one thing that I truly wish I was able to do, and I admit to being jealous of some awesome singers out there. Whitney was definitely one of the top artists I envied. Her voice was just beyond anything I'd ever heard, and I have tried to sing almost every song of hers that was released. Obviously, I didn't even come close to being good!! I hope that her voice and her beautiful songs will be how people remember her, because her talent will truly be missed.

My first memory of Whitney Houston is when I lip-synced and danced to "How Will I Know" when I was a young gal in Girl Scouts. We had a talent show the one year, and I believe that song was very popular at the time. I dressed up in a huge blue sweater (I think it was my dad's), wore a large black belt, and black tights, and had my mom put my hair up in a sideways pony tail. I don't remember if I won the show, but who cares! I just remember having fun to a song that was great!!

Tonight is the Grammy's, and plans have already been shifted to make room for honoring Whitney's talents and music. I'm sure the mood will be somber. But I hope they do a beautiful tribute to such a talented star. RIP Whitney, the world will miss your amazing voice!

Sunday, February 05, 2012


I went back to my first post of the new year, to remind myself what some of my goals were for 2012. It's been almost a month since I wrote that post, and I have to say that I've been making plans for 2 of them in the last month! I have booked the rooms for 3 support group meetings, April, July and October. I have one speaker for the meeting in October, and I'm in the works on getting someone to talk at the other 2 meetings. I think I'm also going to pick a couple days on the months we don't meet to have just a general coffee get-together somewhere. I want my group to feel like they don't have to wait months before seeing each other again. I'm hoping this all works out well.

I got a letter in the mail on Thursday from the PH Association. I've received a partial scholarship to the conference in June! I have until the end of the month to accept it, because if I don't go, they can give that money to someone else. I'm working on how to get there. I truly feel that I will be going, but the plans are still in the works. Crossing fingers!!

Today is Super Bowl Sunday, and do I care? Meh. lol Although K. has taught me much about football and scoring and such, I don't feel like I need to watch it unless he was here, too. We'll see, I may just have it on and play online at the same time! I want to see the half time show, with Madonna. Hopefully she'll be good!

I am deeply concerned about someone I love with all my heart and this person's health. Well, I have been for awhile. How do you tell someone who fights you whenever you ask something specific about how they are doing, and they practically bite your head off in an answer, that you are scared for them and their future if they don't change things? I'm not the only one who has expressed my concern. Sometimes I think I should just go ahead and say what I want and not care how they feel, just so they know how much I care and how much I am scared. That move might backfire, though. It's really hard to know what to do, and the only thing I have been able to do is pray things get better.

Well, I think I will change my background today. I think my blog has seen more snowflakes than the real world here in my little corner of NY, where the snow usually flies constantly this time of year! lol Time to get rid of them, and maybe wear some red!

Wednesday, February 01, 2012

Congenital Heart Disease

Today marks the beginning of Congenital Heart Disease Awareness Month! I was born 36 years ago with an ASD and VSD, known then as Atrioventricular Canal Defect. I was also diagnosed with PH when the holes were discovered at 9 months old. The entire combination is known as Eisenmenger's syndrome. My holes have never been repaired, and are actually helping the pressures in my lungs, although they are still high. Doctors didn't give my parents much hope back then, but hey, I'm still here!!