Showing posts from 2009

Almost Time

It's hard to believe that Christmas is one week away. I started buying gifts for friends and family over the summer, which is becoming sort of a tradition for me. Since I save money every month for Christmas, I have a good amount by summertime to start thinking and browsing for gifts. It makes things so much less stressful when the holidays do come around! Of course, I think I should really wrap the gifts as I get them over the summer and fall, too. I feel like I've been wrapping forever!

With Christmas approaching so quickly, I am also finding it hard to believe that we're about to start a new year. But what has astounded me even more is that we're about to start a whole new decade! Where in the world did the past 1o years go?? I started the year 2000 sick. I rang in that new decade with my boyfriend at the time, in my living room, and under blankets because I was battling a cold. It's hard to fathom that in 10 years, so much is different. But yet, there is so much…

Are You A Donor?

Many moons ago, after losing my teaching job, and trying to figure out how to make ends meet, a friend suggested I become a tutor for the AOL Ask-A-Tutor program. I thought about it, and decided to sign up. I had to go through training, and after that, I started helping in the English tutoring room. The incentive allowed me to get AOL for free each month, about a $21 savings. That was my initiative for joining. But after several months, I started becoming friends with some of the other teachers, and it became more of a social gathering besides just helping students. I tutored at least 4 hours a week, sometimes more, and it was a pretty good time!

A few years ago, AOL stupidly shut down the tutoring program. I soon become an ex-customer of AOL, and found out a bit later that some of the people from the tutoring program had created a new program that gave free tutoring to students from all over the world. I decided to continue to be a volunteer, and I've been doing it since. Not too …

PH Fact Of The Day

Today's PH fact is:

There is hope within the PH community: hope for new treatments, hope for more widespread awareness for the disease, and most importantly, hope for a cure!

PH Fact Of The Day

Today's PH fact is:

There are many conferences and PH forums throughout the year where doctors, nurses, medical professionals, and PHers can learn about the newest info available in the PH world. One of the biggest ones is PHA's Biannual PH Conference, being held this June 2010 in California. It's a wonderful way for phriends to meet other PHers around the world and to learn more about advances in PH treatment!

PH Fact Of The Day

Today's PH fact is:

PHers need support before, during, and after diagnosis. It would be wonderful if their family and friends could be there for that support, but sometimes they are not. It's great comfort when PHers find other phriends who really know what it's like to live with this disease. Whether in PH chat rooms,... Facebook, or live PH support groups, PHers are not alone with this disease when they need support!

PH Fact Of The Day

Today's fact is:

Many PHers take other meds to help treat symptoms of PH, such as blood thinners (Coumadin or warfarin), heart meds (like digoxin, which helps regulate heart beats), diuretics (like Lasix), calcium channel blockers (CCBs, which do not work on all PH patients), and oxygen. These meds work together with the PH drugs to help relieve symptoms of PH.

PH Fact Of The Day

Today's PH fact is:

While PH may be a crappy disease, PHers have much to be thankful for. They are thankful for a doctor who finally diagnosed what they are living with. They are thankful for the meds that help to control symptoms. They are thankful for family and friends who have stuck by them through the tough times. They are also thankful for new phriends who completely understand what they are going through!!

Happy Thanksgiving to all my family and friends, and to all my phamily!! Each and every one of you have helped me get through my hard times in your own way. I am so blessed to have you all in my life!!

PH Fact Of The Day

Today's fact is:

As mentioned previously, Revatio (Viagra) and Adcirca (Cialis) are 2 ED drugs that have been approved to treat symptoms of PH. They work by opening up the blood vessels more so that more oxygen-rich blood can be carried into the lungs, helping to relieve symptoms. Revatio is taken 3x a day, while Adcirca is only taken once a day.

PH Fact Of The Day

Today's PH fact is:

Letairis is another pill that can be taken to treat pulmonary hypertension. It works much in the same way as Tracleer, only it is not supposed to be as harsh on the liver as Tracleer. Monthly bloodwork still must be done with Letairis, however. Letairis has been used alone or in a combo treatment with other PH drugs.

A Little Bit Of Summer

Several weeks ago, we had some beautiful summer-like weather, despite the fact it was almost the end of October, and sometimes we get snow by then! The one day when the o2 guy was here, I had a few ladybugs come into the house. We got a couple out, but over the next few weeks, I've noticed one that has been lingering around. I don't know why, but I find this little bug comforting. I've seen it on the curtains in my living room, then a few days later it was hanging out on the kitchen light. A week after that, I happened to spot it in a place I never thought I'd see it, on a very small bottle of orange Vodka Stoli that I've had forever on my kitchen windowsill! This little ladybug was just hanging out in the sun that was coming in through the window.

Just when I thought that the little ladybug had probably escaped somehow or met it's demise in my apartment somewhere, I saw Mittens going nuts one night while I was making jewelry. Since I always have my earphones o…

PH Fact Of The Day

Today's PH fact is:

Ventavis and Tyvaso are two types of inhaled meds to treat PH. Ventavis came out in 2006, and usually requires many inhalations during the day. Tyvaso came out this past summer, and does not require as many inhalations as Ventavis, and the time spent using it is much shorter.

Jewelry Party!

Mandy and I had a jewelry party here last night, and I'd been getting ready for it for 2 weeks. I was trying to make as much stuff as I could, and this week I had started trying to clean around here. Yesterday I spent the day still getting ready, and didn't really rest much. I got a 15 minute nap, which did help! The party was from 6-1opm, and most people got here in the 7pm hour. It was alot of fun! I made some sales, although not as much as I had the past couple years. Oh well, at least it was something! I had more fun just chatting with friends and family, and eating food. Holy crap, we had soooo much stuff to snack on! And now there are leftovers and no one wanted to take stuff home. Which means, I snack on them. lol Anyway, I was really sore when I went to bed last night because I had basically been standing most of the day. This morning when I got up (almost at 10:30!), I felt like I'd been hit by a bus! I'm so tired, and very achy (and I have a feeling the one …

PH Fact Of The Day

Today's fact is:

Tracleer was the first pill to treat PH. It is taken twice a day, 12 hours apart. Patients starting Tracleer may not notice full benefits from it for a few months, because it takes time to really work. Bloodwork is required monthly for Tracleer because it can be harsh on the liver. Tracleer causes severe birth defects, so women are advised not to get pregnant while taking it.

PH Fact Of The Day

Today's PH fact is:

Remodulin is another IV treatment for PH. It does not need ice packs like Flolan does because it has a longer half-life. Remodulin can also be used subcutaneously, although it can cause much pain and discomfort after every site change.

PH Fact Of The Day

Today's PH fact is:

The very first FDA approved drug to treat pulmonary hypertension was Flolan in 1995. Flolan is a continuous IV treatment. Flolan involves mixing the med and using ice packs to keep it cold. Flolan is often prescribed if the patient is very ill after being diagnosed, or if other PH meds have been tried and haven't worked well enough. For many, Flolan is a life-saving drug!!

PH Fact Of The Day

Today's fact is:

There are so many doctors and other medical professionals who do not understand what PH really is, which oftens leads to the reason why so many PHers are misdiagnosed for years. This is why patients need to help educate their doctors and medical professionals (including EMTs), with brochures, CD-Roms, PH conferences, posters, etc. The PHA provides many materials to help educate!!

PH Fact Of The Day

Today's PH fact is:

Today is Blogging for PH Awareness Day! This is a chance for PHers all around to blog about their experience with this disease! Please visit to read the stories of PHers who do not have a blog, but wanted to share their story. There is also a list of blogs by other PHers!

PH Fact Of The Day

Today's PH fact is:

Pulmonary hypertension affects a person's mental health as well as physical health. Many times, a person diagnosed with PH goes through almost the same stages as the passing of a loved one. There is denial, anger, depression, a loss of "old self" after diagnosis. PHers need support from family, friends, and phriends in trying to deal with this disease!

I guess I sort of feel a little lucky having been diagnosed with PH since 9 months old. The people I've grown up with pretty much understand my limits, and how I feel a lot. Of course, new people just don't get it. They think I seem fine, besides the fact I wear oxygen. Or, they feel so sorry for me because I wear oxygen, and don't get why I'm wearing it after I tell them. I have gone through losses of friends because of this disease, but thankfully not too many. I do try my best to stay positive about my health, and try to inform others about PH and what it's like. I also try to l…

PH Fact Of The Day

Today's PH fact is:

There are many people living with pulmonary hypertension who benefit from doing some sort of exercise program, particularly pulmonary rehab. In a pulmonary rehab gym, PHers are given o2 (if needed), and guidance on exercises that they can do, including walking on the treadmill, light weights, exercise bikes, and arm cycles. Even in small amounts, exercise has been proven beneficial to those with PH!

I have been going to pulmonary rehab for over a year now, and I am so happy with being able to exercise! I go at my own pace, if I can't do something, I don't push myself. It's been a great way to stay in shape, and be able to have a little more energy to get through my days. I highly recommend it for anyone living with PH, if they ask their specialist about it!

PH Fact Of The Day

Today's PH fact is:

Many people with pulmonary hypertension need to be on a low-sodium diet because of fluid retention. When there is excess fluid in the body, and in the blood vessels, the heart has to work even harder to try to get that fluid out. When the heart works too hard for a long period of time, it becomes enlarged, which may lead to right-heart failure.

I am one of the lucky ones who has not had a problem with fluid retention, and I thank my lucky stars for that. It doesn't mean I'm exempt from it, but at least if I know I'm retaining fluid in my ankles or feet, then I have a serious problem going on! I'd need to call my specialist asap! This doesn't mean that I don't care about my salt consumption. I do really try not to use salt, or eat foods high in salt. When I cook, I barely use it. When I'm out at a restaurant, I don't use it then. I am not like my dad, who could pour a container of salt on his food and still want more. YUCK!!

PH Fact Of The Day

Today's PH fact is:

Pulmonary hypertension is probably one of the only illnesses where a woman can say an erectile dysfunction drug is helping her to breathe!!!! Both Viagra (Revatio) and Cialis (Adcirca) have been FDA approved to treat PH!

Oink Oink!

Yesterday afternoon, I found out on the news about an H1N1 flu shot vaccine clinic in Niagara County. I caught the info at the last minute, so I didn't know what time it was or exactly where. I tried all day to find info, and finally did last night. After talking with my friend, Renee, we decided to meet there and go together! I'm glad we did! We spent about 2 1/2 hours in line during the entire process. The clinic started at 11am, we got there a bit after 10am, and there were already over 100 people in line. Apparently some people started showing up at 8am! I was so thankful that at least it wasn't too bad outside, since that is where we had to stand in line. The sun has been out all day today, and it's probably about 55 now. So, it's not how I really wanted to spend my morning/afternoon, but at least I got the shot! And, I had good company while waiting!! Thanks, Renee!!

Oh yes, after a little while, I happened to see Mandy across the parking lot standing in line …

PH Fact Of The Day

Today's fact is:

Chest pain is a fairly common symptom in patients with PPH, occurring in at least1/3 of patients. The cause is unknown, although many experts in the field suspectit is because the muscle wall of the right- sided pumping chamber of the heart,the right ventricle, is not getting enough blood supply to meet the needs of the increased work it has to do because of the high pulmonary artery pressure. Some also believe that stretching of the pulmonary blood vessels in response to high pressures can cause pain.

PH Fact Of The Day, And Shopping

Today's PH fact is:

What is the life expectancy with PAH? There is no simple answer to this question. Life expectancy depends on many factors. Without knowing the specifics of each case it is impossible to even hazard aguess. Even when the specifics are known, survival is very hard to predict. Even though patients with advanced pulmonary hypertension may have a substantially shortened life-expectancy, current treatments appear to help most patients live longer with significant improvements in function and quality of life.

Yesterday, I was out from about 11:30am til 6:30pm! I got more jewelry from Mandy first to put in my friend's store for the weekend, picked up my friend, Dee, got to the store and chatted for awhile with Mary. The store looks so cute, and definitely a lot better than the last time I was there! It has windows!! Mary sold a few things of mine and Mandy's, which is very cool! We'll be getting checks when there's a large enough amount to send them out. …

PH Fact Of The Day

Today's PH fact is:

Can PH run in families? Yes. Approximately 6-10% of cases of primary pulmonary hypertension are familial. If a patient is diagnosed with PPH, all first order relatives (parents, children, siblings) should be screened, usually by echocardiogram.

PH Fact Of The Day

Today's PH fact is more of a request!

November is Pulmonary Hypertension awareness month. PLEASE, please take a few minutes to complete the quiz at the following link. A drug company, Gilead, will donate US$10 to PHA for every person who completes the quiz. Anyone can take this quiz, PHers & non-PHers! Thank you, thank you, thank you!!!

I've been posting everything for awareness month here and on Facebook. Today when I posted this on FB, I asked non-PHers to let me know if they took the quiz by leaving me a comment. As of right now, I've had 8 people take the quiz! Many got only one wrong. It's so easy to do, so if you are reading this out there in blogland, please do it, too!!

PH Fact Of The Day

Today's PH fact is:

Oxygen therapy is something many (not all) PHers need when they have low o2 sats. Some only need to use it at night, some need it all day. O2 helps the heart work better. O2 definitely is something to get used to, but when worn as directed, it certainly helps a PHer get through the day!

Summer In November

Today was a good day for me! The weather was really lovely. Who can beat 65 degrees in November?? Tomorrow is supposed to be near 70! Of course, that bubble bursts when Tuesday drops about 20 degrees. Oh well, such is life in Western NY!

I took advantage of the nice weather to go to Walmart and a couple other places. I enjoyed myself. I've been feeling rather yucky for a week, dealing with pain from a stupid crockpot injury last weekend. Sounds ridiculous, doesn't it?? But I lifted the thing higher than I should have, and I ended up with chest pain and should/arm pain for nearly a week. It's finally starting to get better, at least I hope so. So since I was feeling decent, I got myself out of the house! Tomorrow I'll be out for a bit to get bloodwork done in the morning, and then I think I'll sit on the front porch for a bit to enjoy the last warm day for awhile!

I went to a wake this afternoon for a friend's mom. I actually went to grade and high school with h…

PH Fact Of The Day

Today's PH fact is:

If you or someone you know has been possibly diagnosed with PH, the most important thing to do is find a PH specialist. A PH doc is a pulmonologist or cardiologist who specializes in treating PH patients. Some PHers are lucky to have a PH specialist within their region, but many must travel long distances to see one. To find a PH doc, go to

Jewelry & Beads, Beads & Jewelry

Mandy and I were hoping we'd be able to get a few jewelry parties booked for the holidays, but so far we've only had one, for the first Friday in December. So, last night, after thinking about it for a bit, I asked Mandy if she'd want to do one here. I have the jewelry room to display everything, which is so much better than trying to cram it into the living room!! So, she agreed! I've told about 16 people today, and I know Joan's going to say something to a few people, and Mandy has a couple to tell. Hopefully we'll be able to make some sales. We decided to have it November 21st, so that leaves 2 weeks for us to make stuff. I'm freaking out a little! I finished making necklace sets for a phriend tonight, then made one illusion necklace, and layed out a pattern for another triple illusion set that I can work on whenever I get a chance to do it. I wish I had money a few weeks ago to buy crimp beads, because I am almost out! The ones I did order won't be …

PH Fact Of The Day

Today's PH fact is:

A right heart catheterization is the one test that measures the exact pressures in the heart to see if someone has pulmonary hypertension. If an RHC confirms PH, many other tests may be done to see if there is a specific reason PH has occurred, and how best to treat it. This makes the PH patient feel like a guinea pig!!

PH Fact Of The Day

Today's PH fact is more of an experiment:

Wonder what it feels like to have pulmonary hypertension? Wrap an Ace bandage tightly around your chest. Breathe through a straw. Do it quickly for 5 minutes to see how fast your heart is pounding. That's what it feels like to have PH while doing the most mundane things, like making a bed, going up a flight of stairs or an incline, carrying a laundry basket, etc, etc, etc.

PH Fact Of The Day

Today's PH fact is this:

There is no cure for pulmonary hypertension. However, since 1995, there are now 8 FDA approved medicines and treatments meant to help the symptoms and progression of PH. Some people are one one med, some are on three meds. Each med costs a few thousand dollars a month. That's right, A MONTH!!

PH Fact Of The Day & Babysitting

Today's PH fact of the day is:

Pulmonary Hypertension can be caused by a variety of reasons, including autoimmune diseases, congenital heart conditions, HIV infection, drugs and toxins (including some diet drugs, like fen-fen, which was banned), connective tissue diseases. When no reason can be found in causing PH, it is called Idiopathic PH.

I had to babysit this morning for my little nephew, so I got there a bit after 10am, talked to Mandy for a few minutes, then sat down to watch Sesame Street with the little guy. Let me tell you how hilarious Sesame Street is for adults! While educating children, the writers of the show have also found ways to entertain the parents or caregivers who may be watching the show with the children. I was laughing hysterically and some stuff! For example, I am a huge fan of Law & Order: SVU (Special Victims Unit). Well on SS today, they had Law & Order: SLU (Special Letters Unit), and they had to find the missing letter M. There were 3 detect…

PH Fact For The Day

Today's PH fact for the day is this:

The symptoms of pulmonary hypertension often mimic other diseases or illnesses, including asthma. For this reason, so many people are often misdiagnosed for long periods of time because they are told they have asthma, or they need to lose weight, etc. Symptoms of PH include shortness of breath (SOB) when doing the simplest of things (like walking down a hallway or getting dressed), extreme fatigue, chest pain, dizzy spells, and fainting.

PH Fact Of The Day & Movie Review

Today's PH fact of the day is this:

Pulmonary Hypertension can be found mainly in women of childbearing age, HOWEVER, PH does not discriminate! Any child, man, or woman of any age can be diagnosed with PH.

On another note, I went to see the Michael Jackson movie this afternoon with Dee. This Is It was a fitting tribute to a man who had such overwhelming talent. I loved the music, of course. Almost all the songs are on my mp3 player, and I listen to them at least 3 times a week while doing things around the house. What I found fascinating in the movie was how much Michael was involved in every aspect of this concert. He was there when they were trying to find dancers, he was there making suggestions of when to start this sound and when to end that one. He never shouted and thanked everyone for anything involved in making the show just right. It really would have been one heck of a concert to see! If you are an MJ fan, you really should see this movie! I admit I got a bit teary-eyed …

It's November, Guess What That Means??

It's PH Awareness Month!!! Once again, I plan on posting every day a fact about Pulmonary Hypertension. Last year I had some long posts, some short ones. This year, it's going to be just a fact about PH. I'm hoping someone out there will learn something!! Here goes!

Pulmonary Hypertension is NOT high blood pressure! It is a chronic lung disorder in which the pulmonary artery (from the heart to the lungs) is constricted, causing high pressures in the lungs. It can be life-threatening if not treated!

A Couple Of Updates

Well, when I went to rehab on Tuesday and told the RTs in the office about my free rehab, they said they were going to double check with the financial counselor. They were really surprised I got it approved. They didn't hear from the counselor by the time I was done working out, so they said they'd let me know on Thursday. So, I went to rehab today, and was told that I really should not have been given a free year. However, they talked to some higher ups, and they are still going to honor it. I'm relieved! I guess I'll just have to start putting pennies and nickels away for when the year is over and I need to start paying for rehab again. At least it's still something I won't have to worry about for awhile.

I also got my electric bill yesterday. I had to pick up my jaw off the floor after seeing the bill. Last month, the actual usage was 590kw, and it was about $90-something. This month I only used 193kw, and the bill was $43. Holy crap!! Was my concentrator usi…

Mittens Wants Pizza!!

Another Support Group Meeting Down!

Today was my PH support group meeting, and it went well as usual! I searched my old journal entries last night to figure out when I had started my support group, and found that the first meeting I ever had was October 15th, 2005. I can't believe it's been 4 years! I remember being incredibly nervous that first meeting, not sure what I would say, not sure how people would respond. But all I did was talk about myself, my experience with growing up with PH, and soon after, everyone was interacting. It was a small group to start out with, and eventual meetings would go back and forth from being small to medium-sized, but the past couple years, I think it's been doing well. I seem to be getting several "regulars," which is wonderful! I didn't have a speaker today, but I just wrote down some topics I wanted to mention, and left it an open discussion type of meeting. It went really well, and rather quick, too! The meeting started out with one of the members thanking…

Divine Intervention

I started pulmonary rehab over a year ago at St. M's hospital, and I really feel that I've benefitted from it so much. I've enjoyed going for the exercise part, but I have also really become attached to the people I workout with. I'm the youngest one there! There's a man who will be 92 soon (I soooo admire his determination to be there, not to mention the fact that he walks on the treadmill at an 8% incline!!), another in his mid-80s (and hilarious!), and several other people ranging from 40s-70s. It's a wonderful group to hang out with. We laugh and joke while we are working out, and share stories. I learned that the 92yr old guy built the first house on the street I lived on! I can't even imagine what my street looked like with just one house and apple orchards compared to how it is today. Stuff like that just makes me glad I'm going there!

Lately, however, I've been having a very hard time paying for the rehab classes. It's $36 for 8 sessions,…

Another Week Gone

I am here. I had a good week. Went to rehab on Tuesday, spent Wednesday making jewelry and avoiding the outdoors because it was a nasty rainy and windy day. Thursday I cleaned the bathroom, shook out some rugs, and tried to fight with the vacuum. If it wasn't for getting the cord and the tubing tangled up together and tripping on both or vacuuming them both, I wouldn't mind too much doing it!! Friday I walked a mile on my treadmill. I don't know where I got that energy, but I was happy that I could do it! I'm sure that won't happen for awhile again.

Today I made a lanyard for my friend from college, and it came out so nice. I wasn't sure about the beads and the colors, but I love it. And I think she will, too! I love making custom orders. I try so hard to get things just exactly the way the customer wants it. I spent so much time finding the right beads for my friend, and she said she felt like a pain in the butt, but I didn't want her to just go for somethi…

Busy First Weekend of October

It's hard to believe, but October started on Thursday. Where did September go?? As the years go by, the months seem to just zoom past me and I can't remember anything I did. lol This weekend was nice. Friday I ran some errands before the o2 guy got here to fill up the Bubbas. I took it easy for the afternoon until about 6ish, when Joanie came to pick me up for a night of adventuring. We had dinner at Chili's, which was pretty good. I had only been there once, and I had dessert that time. It was busy there, but we didn't really have to wait too long for a table. I'm just glad there's another new restaurant in that area besides Applebee's. The newness of Chili's seems to have worn off, but I'm glad it's still busy!

After dinner, we went to the Outlets. Joan and Rick went into a shoe store so Rick could find a new pair of shoes for one of his suits. Then we went to Bath & Body and smelled everything in the store. Gosh, I love that place! Joan w…

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.


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

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 al…

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 …

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…

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!

Silence Is Deafening

Ever since Friday, there's been this strange silence. It feels so weird not to be listening to an oxygen concentrator. I mean, it has been a part of my life over the last 9 or so years. To hear nothing is just odd!! I will eventually get used to that, but it might take me awhile!

Today another silence is upon the house. My upstairs neighbor knocked on my door this afternoon, and when I opened it, she went to give me some rent money, and broke down crying. She said she was sorry, she had just put Frasier down that morning. I was taken aback. I told her how sorry I was, and she hugged me and kept apologizing for any problems she caused. All I could think about were the times I got irritated with Frasier barking so much, but many of those times I just dealt with it through listening to headphones. I asked if Frasier was sick, and she said they think he had a tumor. She was just inconsoleable, and turned to go upstairs. I told her if there was anything she needed to please let me know.

One Decision Made!

Yesterday, I was introduced to the world of liquid oxygen! Yep, I decided to go for it! Mandy and Ron came over on Thursday night to take apart the daybed. I situated the room for jewelry and for space for the 2 reservoir tanks that I knew would be coming, and was all set for Friday's delivery. The o2 guy came in the afternoon (I'm pretty sure his name was Mike, but I am phorgetting already lol), and I showed him the area I wanted the tanks. He did suggest that I put them in the front hallway, maybe at another time, because it would be so much easier for them just bring the dolly up the stairs and fill the reservoirs, instead of traipsing through the house with wet or snowy dollys in the winter. And the tanks will fit! So, I'm thinking next Friday when they come to fill, I'll just have them move the tanks into the hallway anyway.

Mike (?) showed me how to use the tanks. They seemed pretty simple enough! The tricky part was trying to show me how to use the cute lil Helio…

Savings My Butt!!

Last summer, I had the unfortunate opportunity to get a visit from a representative of a group called US Energy Savings. The guy explained how the electric company's supply services constantly can go up, and if you signed up with US Energy Savings for 5 years, you are guaranteed to be locked into one price. So no matter what happens, if the electric company's supply goes through the roof, you still pay for the price you got locked into when signing up with them. So, I thought sure, why not. I signed up for it, and several months later wished I hadn't. You only had 30 days to cancel their service, but I forgot, and never did. If you tried cancelling earlier than the 5 year contract, you'd pay a big fee. So I felt stuck at 11 cents a kilowatt, which was the rate I was locked into after signing up.

In June, I received a letter from them. They said that after I signed up, they neglected to send me my welcome information. So, because of their error, I was given 30 days from …

Decisions, Decisions

I've been on oxygen for almost 1o years. In all that time, I've used a concentrator and portable tanks. Well, I'm trying to make a decision on whether or not to change this. Why? The electric bill is just getting out of hand. I'm on the budget plan for National Grid, but I still have to pay at least $100 a month! I have tried so much to cut down on energy. I've changed almost all my light bulbs to the new energy saving ones. I keep my toaster unplugged, parts of the computer unplugged, the washer unplugged. I'd unplug the dryer, but I just can't reach the cord all the time to keep taking it out and putting it back in. I'm just at a loss, and I don't know what to do to make my bill cheaper!

I hadn't really considered getting liquid o2 before because I just don't have the room. The hallway wasn't safe because of having a tenant upstairs. Every room of my apartment just didn't have the space for the liquid o2 unit. I have a lot of furnit…

Heaven's Fireworks

Last night around 8:30pm, I started noticing lightning in the skies. It wasn't much at first, but within half an hour, it was getting worse and worse. And cooler and cooler. It got really bad and very bright at some points, which made me get off the computer and just watch the lightning from my dark computer room window. I am always amazed at thunder and lightning. I love the storms, except when they cause damage, of course! I had never seen a lightning storm like last night, though. At 1am, when I was finally dozing in bed, it was STILL going off. I couldn't believe that almost 5 hours later we were still getting the lightning!! We have chances of thunderstorms for most of this week, but I am pretty sure I won't ever see a night of heaven's fireworks like that again, at least not for awhile.

A Summer Favorite

This weekend is the annual Lewiston Art Festival, something I've loved to go to for quite a long time. I've been to it almost every summer for at least the last 10 years, and it's been running even longer than that. There are so many different artists who make such a wide variety of things: handmade jewelry (they are supposed to make some aspect of the jewelry, whether it be the beads, hammered silver, something like that, but I'm telling you that some of those vendors are NOT doing that!!), pottery, glass pendants, pictures and paintings of all sorts, wooden items, etc, etc. I love to go to just browse at everything, especially the jewelry and any glass items. I like to get ideas, and I just love looking at anything glass!

This year I went with mom and Joan. We got there a little after 1pm, and had to walk a bit to get to the main street where it's located. This year, they changed a few things, including closing the main street to traffic. BRILLIANT idea!!! There …


August 2, 2009
I guess I had a better night's sleep. I've only been up for 45 minutes, and haven't ventured downstairs yet. But I am dressed and mostly packed. We'll probably leave in the early afternoon. I've enjoyed my visit here, but I'm not sure it brought me the peace and comfort I was looking for. I don't know what I'm looking for. I just feel lost. I'm not quite sure how to explain it. I'm hoping thise feeling of emptiness will pass soon.

I'm looking at all the pages I've written since I've been here. Wow, I got a lot out. I'll be typing all of it into my blog when I get back. My handwriting has sucked through most of these entries. No wonder I've enjoyed blogging so much more since I stopped writing in my actual journal!
Ok, this is me writing in the here and now! It's August 5th, and I got home safely, for the most part. Mom was getting tired on the way back a…


August 1, 2009
I woke up at 6am, and thought about looking out the window for a possible deer siting. I was just too tired to do it. So a little after 7, I woke up again to take Revatio and took a quick peek. Nothing. I woke up again close to 10am. After breakfast, a shower, and getting dressed, I felt like I already needed a nap. Grandma told me just to go lay down since we weren't doing much, so I came upstairs for awhile. I guess I feel better. I'm not totally sure.

We are supposed to visit mom's Uncle Eddy in a bit, and then go to church, then to Aunt Beverly's for dinner. I'd like to ask Beverly about hosting a jewelry party for Mandy and me. She knows quite a few people, and she loves hosting parties! I can't see her saying no!

I don't know what it is about this trip, but I feel more and more that perhaps I need to go talk to someone again like I did years ago when I was dealing with so many emotions. Mason's death is one blatantly obvious reason to…


July 31, 2009
I had a somewhat restless night. It's still raining, and it's very blah out. Gee, kinda like home! I woke up at 6:30am and decided to see if I could spot any deer in the backyard. I put on my glasses and sat on the floor to look out the window. I thought perhaps I had spotted a deer, but the gloominess of the early morning and the fact that my glasses are not the same prescription as my contacts made me finally realize that it was just part of a tree. Duh! So I went back to bed, woke up about an hour later to take Revatio, and looked out the window again. Still no deer. Oh well, maybe tomorrow.
We just got back from having lunch with my cousin, Ryhan, and two of her daycare kids. We had the lunch buffet at Pizza Hut. It wasn't too bad, considering I never eat there anymore. The kids get to eat free, so that's a plus! Afterward, mom and I went to a store called Bargain Hut. Mom grew up knowing the shop as T…