Saturday, September 26, 2009

Busyness and Stress

I felt rather accomplished today, even though I was really tired when I got up this morning. The weather is definitely cooler in the mornings, and I always feel like I'm getting sick because I'm not warm enough, and neither is the house. I'm trying so hard not to turn on the heat yet! Anyway, after having my prolonged breakfast, I washed the dishes, and cleaned the bathroom. Then instead of changing over my wardrobe from summer to winter, I decided to put down the storm windows and put up some plastic. I had enough for 3 windows, so covered the two in my bedroom, and one of the windows in the jewelry room. I've never covered the windows in there, because that room was barely ever used during the winter. The only time would be when Lisa would come home for the holidays. I am planning on using that room all the time now, so I'm going to close the computer room for the winter. I'll just use it when I have to put bills and such on the desk, and to print things.

After cleaning, I napped a little bit!

I made dinner after getting up, and since my satellite receiver is on the fritz at the moment (which is irritating), I decided to cut up ingredients for a crock pot beef stew I found. I really hope it turns out ok! It calls for dry wine, and I happen to have Cabernet Sauvignon that a friend gave me for my birthday. I opened it tonight, and tried it. Wow, I thought my throat was on fire! I don't think that I like it much, but if it works for cooking, whoo hoo!! I guess I'll see how it goes with the beef stew!

I'll be going out to Amherst tomorrow, to spend some gift cards and have lunch with Renee and her hubby. I have cards for Michael's and Joann Fabrics, so I'll be able to buy more beads and supplies! Then, I have a gift card for Kohl's. I can actually buy myself some fall items, and new slippers! I'm a bit excited!

All this busyness has allowed me to sort of not stress constantly about money. I am having really hard time right now trying to make ends meet. When things suddenly go up on me, like my stupid electric bill recently, it makes me so upset and constantly trying to figure out where I am going to get the money to pay for it. I know I'm not the only person with money issues, and I feel like I should't be complaining. But when I'm stressing, my health can be effected, and that makes things even worse!!! Somehow it'll get worked out. It has to, or else I'll just have to spend my time sitting in the dark with candles and twiddling my thumbs so I'm not using electricity at night with the lights and the tv, and the laptop!!!

Thursday, September 24, 2009

Message To A Dear Phriend

Dear Mason,

Happy 21st Birthday! Of course, I wish that you could actually be here to celebrate it. I know that I will never forget your birthday since it is a week after mine. I missed not getting a funny birthday card from you this year. I also missed not being able to pick one out for you. But I will be thinking about you all day today. Many of your phriends will be celebrating for you with drinks and some of your favorite foods. I promise I won't eat fish tonight. lol If I can find Oreo Cakesters, I will get some just so I can have one (or more) in your honor. Maybe I'll even stick a candle in it! I miss you, HB, and I hope you know how much we all love and miss you. We can never forget what a dear phriend you were to so many of us. I will never forget how much our friendship meant to me.

Love ya, my phriend,
Your SC

Thursday, September 17, 2009

Another Year

Thirty-four years ago today, I was born. Nine months after I was born, after not gaining much weight (ounces instead of pounds), and having several doctors tell my parents something was not right with my heart, I was diagnosed with atrioventricular canal (just a fancy way of saying I have 2 holes in my heart!) and pulmonary hypertension. The doctors gave my parents more grim than optimistic news. They told them to basically try to have another baby very soon because they really didn't believe I wouldn't make it to my first birthday. They gave my parents a range: "Oh she could live a year, she could live 50," but I personally feel they didn't have all that much hope. I was diagnosed too late for them to correct my heart, so basically, there was nothing they could do for me but keep watching my heart with years/decades of echoes, and digoxin (which has kept my ticker working!). There was just nothing to do for the pulmonary hypertension when I was a child!

After all the stuff I have learned about PH since I finally started taking meds to treat the symptoms back in 2003, I look back at my childhood, teenage years, and young adulthood, and wonder one thing: how the HELL did I ever make it that far without meds??? I can't even begin to describe the shortness of breath I dealt with for 28 years. I was SOB no matter what I did. I just carried on after I caught my breath, and my heart didn't feel like it was going to burst out of my chest after doing something like making the bed, or sweeping the floor, or carrying a load of laundry up the steps. I honestly thought it was just pretty normal for me to sometimes clench my jaw while waiting for my heart to slow down. The ringing in my ears that was almost deafening sometimes because my heart was beating so fast after just walking to the house from the street was just something I thought I had to learn to deal with. And don't ask me how I worked in a building that I had to go up and down 4 flights of stairs at least twice a day. I have no friggin' clue how I pulled that off. Not to mention, dealing with the little kids and talking to them on the way up (down wasn't the problem, up was!!). I just can't understand how the heck I made it that far without the drugs that are now available to treat PH. I chalk it up to having a family that understood the best they could, parents who have been there for me in so many ways, and definitely the Lord above. There are so many times I've prayed to Him just to give me strength to go on, and apparently He has listened so far!

I have to admit, turning a year older is exciting for me, and yet it is scary at the same time. I understand that all of us, living with an illness or not, have an expiration date stamped on our foot. Of course, none of us know when that date will be, or how we are going to die. But when you live with a chronic illness and a congenital heart condition, and you come across the bleak stats, it's a bit frightening and depressing. When you have people living with your condition dying because of said condition, you just wonder a bit more if the same will happen to you. This summer has really gotten me thinking about my situation a lot more with the loss of Mason at such a young age (only 20), and the loss of many other phriends. It's been an awful summer being a PHer and realizing that even though there are so many treatments out there now than when I was born (nothing back then!), there are people who die from this wretched disease. What makes it even more depressing for me is that I have been coming across different things about Eisenmenger's (the condition I now have as a result of living with PH and congenital heart disease all this time). The stats on people living with Eisengmenger's is not all that impressive. I've seen info where living until the ripe old age of 37 is commendable. I DO know someone who has been living longer with it, and I DO know that there is still some old info out there. BUT, that doesn't mean it doesn't scare the crap out of me. I guess being focused so much on death this summer has made me question my mortality. I'm trying to get over it. There isn't much I can do about it, except just try to keep myself as healthy as possible by doing much of what I've been doing for the last several years. I've been eating mostly better, I've been exercising, which is really good, and I've been trying my best not to get colds (hibernating in winter seems to help that lol). That is about all I can do!

I know, this seems like such a morbid post considering I'm supposed to be celebrating another year of life that God has allowed me to have. I can't express how greatful I am to still be here. I will be with my family and friends this weekend, who I love all so dearly, and who have helped make tremendous impacts on my life. I am so appreciative of the phriends I have made over the past several years as well. I am in awe of what God has brought into my life in the past 34 years, and I look forward to seeing what will continue to be in my life for the rest of my life. No matter how many years that may be.

Saturday, September 12, 2009

A Nice Evening Out

Saturday afternoon, I called my parents to see if they wanted to go to the Peach Festival later. Mom told me that Dad was sleeping, so they'd let me know. A couple hours later, Dad called, and asked if I still wanted to go. It ended up just being the two of us, since Mom just didn't feel like wandering around. So Dad picked me up and off we went!

Dad dropped me off so he could find a parking spot. The place was CRAZY!!! The weather was perfect, not too hot, not freezing, and no rain in sight! So of course, everyone was there! I found Dad about 15 minutes later, and we walked around trying to figure out what to eat. I ended up getting a shaved steak sandwich, pretty much like a Philly cheesesteak. It was very good! Dad got his usual bratwurst from the German tent. He likes to talk to the owners in German while waiting! Showoff!! Actually, I think it's pretty cool! :) After we ate, we decided we needed something more, so we picked fried dough. By the time we finished eating it, both of us looked like we had been snowed on!! It was very delicious, though! After that, I went to the Mexican tent and bought 2 bobblehead turtles! They posted above! So, now I have 8 turtles! Whoo hoo!

Dad and I wandered around a bit more, just watching people and seeing what was around. We got to a section with mostly rides and games, and it was so busy with teenyboppers, that we turned around and went back the other way! Dad chatted with me about some things, and I was just having a really nice time. It's not too often that I do things alone with Dad, so the time spent with him was wonderful! We decided to get funnel cake, coated almonds, and kettle corn, and made our way back to the van. It's a good thing I can walk down hills well! He dropped me off at home, and I just rested for the remainder of the night! It was a lot of fun hanging out with Dad!! :)

Monday, September 07, 2009

The End of Summer

Many months ago, I had a very vivid dream about meeting Mason. I went out west to California to where he was living while waiting for his transplant, and my mom was with me. Mason was in a wheelchair, and we had to help him get in our van so we could go somewhere to eat. We ended up at a mall, and then suddenly Sammy was there and Mason's mom, Janet. I remember feeling sad because Mason wasn't feeling all that great, and so we had to bring him home. But I had at least gotten to meet him, despite him not doing so well. I told him this dream the next morning, and he was just happy to hear about the part of meeting me.

Several weeks later, I had another vivid dream about meeting Mason, only this time Mason was very healthy! He actually came here, and he helped me around with my o2 as we visited all the places I had planned on showing him when he had wanted to make a trip to the Falls almost a year ago. We spent the day very happy, and I could actually hear our laughter in my dream. It felt so real. Again I told Mason about the dream the next morning, and he liked it very much!

Today was the unofficial end of summer, and even though I'm usually sad when Labor Day arrives, this year I wasn't. My summer ended the day that Mason died. I begged God so much to let him live, to let him get new lungs again, to let us be able to meet each other in person and have so much fun like the second dream I had of us meeting. I cannot begin to understand why God needed Mason back so badly, but that is not something I am supposed to question. I'm still trying to do my best to accept it, and to appreciate the time I had to get to know such a great young man. Next Monday (the 14th) will be three months since he passed away, and although I am doing better than I was when he first died, I still have my moments when something triggers the tears.

Summer was also sucky weather-wise. It doesn't help when I look forward so much to summer and heat and then we hardly have any of it, and fall starts up soon after. I'm already dreading fall. I do terribly when the weather changes. Summer to fall seems to be the worst for me. I hate waking up in the mornings feeling cold, and yet it's not cold enough to turn on the heat. I also get rather short of breath doing things, and it makes me feel like I'm getting worse PH-wise, which I know is not the case. But of course, it leaves me to question whether I am getting worse anyway! It's just an aggravating time of the year!

This weekend I really felt terrible, very exhausted and I had some chest pain. It was really bad on Saturday. I thought it had to do with the weather, which was weird because even though I get SOB, I don't usually have chest pain. By the time Sunday night rolled around, I realized what the pain was coming from: filling up Artie! I have to press down rather hard on the big reservoirs while filling him up, and since I'm only a foot taller than the reservoir, I'm putting a lot of pressure in my chest. Soooooo, I am going to try using a stool, and if that doesn't work, a chair! I don't want it to be a major issue, because if I keep getting pain, there is no way I can keep the liquid o2. I'm really hoping the stool will be the answer!

A Little Collection

I'm not sure when it started, maybe with my little turtle from Aruba given to me by a good friend, but I have a little collection of turtle figurines that reside on my kitchen windowsill. One of them is glass (the Aruban turtle), one is porcelain (the one with the surprised face), and the rest are wooden bobblehead turtles from Mexico. The little Mexican turtles are all from a guy who sells them at the Peach Festival, an annual event that comes every 2nd weekend of September. That means this weekend! And guess what?? That means 2 more turtles!! I do hope the guy is still there, or I'll be very disappointed. I am so tight on money this month, but I have saved up to get the turtles. I know, sad, huh?? Hey, I have to have something to make me happy! If anyone knows where I can get little turtles of any kind, let me know!! I just love them, they are cute!