Daily Ponderings

I had a good workout today at pulmonary rehab! This is good, considering the last time I exercised was a week ago, and it didn't go too well. I walked on the treadmill at home, because it was freezing out. I barely made it to 6 minutes, and I felt so tired. I wasn't feel top notch, so I guess that was the reason I didn't walk better. Anyway, today's workout felt good, and I was happy I went! I kept debating whether I really wanted to, but it turned out to be a good choice in going! When I got home, I checked my mail. I had an envelope full of leaflets of a wide variety of products. Things like, bags to keep your produce fresh, an angel for your car's visor, balls to keep your laundry from pilling in the dryer, etc, etc. Lots of "Seen on TV" stuff! I went through all of them, and put aside items that seemed interesting, and I wanted to take a second look at them later on. One of the items was a pedal exerciser. My eyes widened at this one! It looks like a v...

I had planned on going out to some stores at the mall tomorrow after pulmonary rehab, but after I watched the news tonight, I decided to just venture out. Also, something had burned upstairs, and the smell was bothering my lungs! I needed to just get out anyway. So, I did! It was off to KB Toystore first, which is going out of business. I'm really sad about this. It's the first place I go to when I need to get a gift for a child, because they have some good items at decent prices I can afford. Other than Big Lots, which doesn't always have a lot of toy options, Target and Walmart are the two places left to buy toys in Niagara Falls. Toys R Us is out on the boulevard, and I'm not driving half an hour to shop at a toy store! Anyway, I found toys for the two kids who have upcoming birthdays that I will be celebrating with, and off I went to another section of the mall. I had to drive closer to that section, because it was quite a distance, and there was no way I was walkin...

It's hard to believe that Christmas has come and gone by now. I had a very nice day, though. I relaxed for most of the day, eating breakfast, chatting with friends, and opening gifts I had gotten from a couple of good friends. I got asparagus ready to cook when I arrived at Mandy's house, and put together the stuff I needed to bring over there, too. It was a very relaxing afternoon here, and then my parents and Joan picked me up around 4pm. Off to Mandy's we went! Celebrating Christmas at Mandy's house has been nice. We've done it the past 3 years, because it's easier on them than having to drag the kids and presents over to my parents' house. We finished getting things ready for dinner, then sat down to a food overload!! We had ham that was so good, scalloped potatoes that were quite tasty (due to my dad's perfectly sliced potatoes!), asparagus parmesan (which I made, and I do think I'll make that again for myself!), sweet potato casserole (I ate a ...

Ah, the Christmas Tree! How I love to put it up every year, and take my time decorating it with the lights and the ornaments I've gotten over the years. There's a reason why I insist putting it the day after Thanksgiving, so I can enjoy it for over a month!! Here is a view from the entrance of my living room. Hard to tell, but, I am not the only one enjoying the tree! Something lurks in the shadows, something big and fat, with a very weird taste for fake tree limbs! Aha! The Christmas Tree Stalker has been spotted!! This crazy creature comes from anywhere in the house, nibbling at the tree when he thinks Mommy isn't looking! The Christmas Tree Stalker then tries to hide behind the tree, thinking he will not be spotted. He is wrong! After taking this picture, Mommy sprays the Christmas Tree Stalker with water, and he runs away from the tree! Don't worry, he will try stalking again later when Mommy isn't paying attention!!

Today's weather has been downright nasty! I don't know this by experience. I did NOT go outside! The winds have been awful (it's almost midnight and they are still very strong), and whiteout conditions could be seen from my windows. I can't imagine what driving in that was like!! It's very cold also, with a -8 windchill. For people who have to be out there for whatever crazy reason, I feel very sorry for them!! Tomorrow will still be very frigid, so I won't be going out probably until Tuesday. Maybe. I can go to rehab, but the low temps on Monday overnight into Tuesday will be in the single digits, and I don't think it'll warm up quick by 10:30am! So we'll see. I feel like a weathergirl! lol I did a bunch of things today. I made egg salad, cleaned the dishrack to the best of my ability (it's stubborn!), made my pecan pie (must try not to eat a piece before Christmas!), and tried to finish working on a 6-strand black necklace I've been making...

These pictures don't do anything to justify how beautiful the bracelet I got from Cathy is, but I thought I'd post them anyway!! I wish the camera would have done a better job! You can at least see how skinny my wrist is, though!! LOL

So, the snow came yesterday. Started around 8am, I think, and sorta tapered off here after 4pm. The Niagara region got the most snow out of all of Western NY. Some areas saw a foot of the white stuff! If I had to guess, I would say there are at least 9 inches out there. I've never been good at judging how much snow is around. I would go out there with a yardstick if it wasn't so darn cold!! We're supposed to be getting another storm tomorrow, with a few more inches, but the winds are going to be really bad. I'll be staying warm again in the house!! Here are a few pics! This is the view outside my bathroom window. The tire tracks on the sidewalk are from a neighbor who lives a block over. He drives around in an ATV with a small plow, and drives around the area "shoveling" certain people's sidewalks. We've known him for years, and I am glad he comes down my sidewalk! A picture of part of my backyard and the house across the street. I took this from my ...

I reluctantly went to rehab today. I didn't really feel like it, but I had other errands to do afterward, so I just said "Let's get it over with!" I didn't go on Tuesday because it was a balmy 19 degrees out, but I did exercise on my treadmill. When I left this morning, it was 28, not windy, and that made the difference. My rehab stint was ok, not the greatest. The exercise bike really killed my upper legs for some reason today, so I didn't stay on it long. No sense in making them turn into jello! I finished exercising, and went to pick up a prescription. Then I got some stuff for Joan's boyfriend, since it is his birthday today. I have no idea if he reads my blog, so I don't want to post what it is I got him. lol After that, I went to the credit union. I gave Joan the thing for Rick, since I'm sure she'll see him sooner than I would. He's in FL. Ooooooh. Oh well! I also brought with me a 6-strand bronze-y necklace I had made a while back, ...

Today I had to go get my PT/INRs checked again, because two weeks ago they were a little whacked, and my doctor just wanted to make sure they were ok. So I got up, had breakfast, got myself ready to go, and left around 11am. I was happy that no one was waiting to be called to get paperwork done, and that hardly anyone was waiting for bloodwork to be drawn! I was out of there a little before noon, and I went to my parents' house to put up their computer. I got that all taken care of (I was nice and even dusted their computer stand before putting up the new tower!), for the most part, and was playing games on it when my mom came home. She had wanted me to wait until she did something with cords and put a faceplate on the wall before I put up the tower. Ooops. She made lunch, and after that, I unplugged everything, put the faceplate up, plugged things back in, and my mom vacuumed. I turned the computer back on, and was excited to see that I could get on the internet, when I couldn...

Well it's official: I'm ready for Christmas! I keep wondering if I'm forgetting anything??? I finished wrapping all the gifts yesterday, and everything I wrapped is surrounding my tree in the living room. It looks nice! I almost don't want to give them out! lol My cards have been sent, ecards are ready to go out (yes, some people are getting ecards because I ran out of stamps, and money to get more!), and the big box I need to mail to one of my friends with her Christmas items is all set to go. It feels sooo weird to be done, and yet sooo good. I'm not stressing over last minute gift ideas, or trying to find time to wrap stuff, or anything like that. YAY! Christmas dinner is going to be traditional this year, which will be nice! I was talking to Mandy today about anything I could make. I am definitely for surely sure, 100% making the pecan pie, because gosh darn it, we didn't have one during Thanksgiving!! But, that is dessert (or part of it, anyway)! We...

Today I declared it Pajama Day! I woke up a bit late, and just knew I wasn't going to rehab this morning. I didn't feel like it, plus it was a bit chilly. I've also been incredibly achy the past 2 days in my legs. Tuesday I was out out all day, and that was after I had gone to rehab! By the time I got home, my legs were killing me. Yesterday, my legs were ok until evening. Maybe it had something to do with sitting most of the day at my mom's house, and on her dining room chairs, but they really just hurt. So I decided no rehab today, BUT, I did walk on the treadmill for 12 minutes. Yay! After I took a shower, I put my pjs right back on! I haven't had a pajama day in quite some time, so I thought today would be a good day for it. The biggest thing I accomplished was getting 90% of my wrapping done. I don't mind wrapping at all. It's kinda relaxing, I play music and just figure out how much paper I need for what gift, etc. My biggest problem with wrapping, how...

I woke up to the sun shinely brightly in my bedroom today. It was a nice way to wake up, and the sun seemed so delightful. But that sun was very, very deceiving. Despite the fact it was peeking in and out of the clouds for much of the day, it was not warming whatsoever! Bad, deceitful sun!! This weekend has been so cold, and I haven't been out since Thursday afternoon. Tomorrow will still be in the 20s, but at least on Tuesday and Wednesday it'll be mini "heat wave." I'll be able to go to rehab on Tuesday, and maybe try to go for my xray and Walmart at some point on either day. Then, it'll be in the 20s for a couple days again! Winter has been hard for me the last couple years, because the weather seems to be more bitterly cold than snowy, like when I was a kid. We had huge snowstorms at least twice a season when I was growing up. It didn't seem like it was very cold when I was little, either. Lately, temperatures in the 20s and low teens seem to be occurr...

Irritatingly, I had to pick a new Medicare Part D plan, and I decided to make the phone calls today. I didn't want to, mostly because I knew it would take up a lot of minutes on my phone! But, I guess that's why I have 900 minutes?? Anyway, I was changing plans because the one I'm in now will have a premium for next year. Although it seems like a small premium to some people, at the end of most months, I'm surprised when I actually have money leftover. I don't want to be struggling to pay another bill every month, and my medicines are so important, so I need to change to a plan that had no premium!! The letter I got in the mail had about 8 other plans I could call to see if they A) covered all my meds, and B) worked with Accredo Pharmacy for the Tracleer and Revatio that I receive from them. I called 3 of the plans, two of which I got a live person right away. The first guy was sooo nice, I wanted to switch to that plan just because of him! He said they did not wor...

Most people know I make jewelry, but I also thought I'd mention that my sister, Mandy, has been making really really really beautiful glass pendants. I'm not just saying that because she is my sister! I am an addict of anything glass, and every time I go to her house, I want to look at her pendants because I JUST LOVE THEM. lol Anyway, she now has an Etsy store, the same site where I have mine. Please take the time to browse and perhaps purchase something!! She has quite a bit up, but I know she's still working to post more. So save the site! hehe www.glowingglassstudio.etsy.com And by the way, here's my site again, just because! www.fromtheheartjewels.etsy.com Thanks for looking!! :)

Today marks the 8th anniversary of getting a furry little kitty cat as a Christmas gift from one of my best friends. He went from this: to this: All in a matter of 8 years!!! How on earth did I ever live without him in my life??? I just don't know! Mittens has been such a joy to me, and has been here for me the entire time I've had to quit my job. He makes me laugh, he makes me cry, he makes me angry, but I'm sure if I had a human child, I'd feel all those emotions, too. I've told him all day today that it's been 8 years since I've been his Mommy, but of course, I don't think it means anything to him. It was just an ordinary day! He did, however, curl up under the blanket with me on my bed to take a nap. We haven't done that in so long (he's usually sleeping in his huge box I can't get rid of), so it was rather nice! I am really hoping to have my little man, as I like to call him, for at least another 8 years!!

It's no secret to anyone that I've been shopping for Christmas since June. I start saving money for the holidays in January, because if I didn't do that, I would never be able to afford Christmas. Over the summer, I started finding deals and items that I thought would make great gifts, especially for the many friends I buy for. So why wait for November/December to buy them? I've been able to pay for 90% of what I've bought with cash, and for the stuff I've used my credit card for, I've put the money right in my bank account to pay it off on the card. So, it works for me, and I have no stress right now because of it! I finished my shopping on Thursday night/early Friday morning from the comforts of my own bedroom! Gotta love the internet!!! Today, I went out and bought 3 boxes of Christmas cards and 2 rolls of wrapping paper at the dollar store. So, I can start slowly wrapping stuff, and getting the cards out in the mail. I feel so gosh darn prepared. I'...

It's the last day of November, the last day of PH Awareness month. I honestly can't believe I actually kept up with writing something PH related for every day of November!! I've touched upon what PH is, how it is diagnosed, who to see for treatment, what the available treatments are, and various ways of dealing with living with pulmonary hypertension. And just because awareness month has ended does not mean I will wait until next year to start talking about PH with people who don't know much about it again. I am always trying to make others aware of this disease. Wearing oxygen helps quite a bit, since I do get looks and occasionally questions about why I am wearing it. I pass out the green PH cards from the PHA, explain what PH is, and tell them to browse the website to discover what this disease is all about. This Thursday, I am planning on bringing PH posters to my PCP's office to ask if she would post them in some of the rooms, and perhaps even in the waiting ro...

This PH awareness post goes out to the many PHers who are sadly lost every year to this dreaded disease. For various reasons, they pass away from complications to this disease, or from complications caused by the underlying reason to their PH (if they had one). These phriends are sadly missed, and even if we may not have really got to know one of them, it's still heartbreaking to know that another one is lost to this disease. It makes wanting a cure so much more urgent, so much more NEEDED. The phriends I have lost this year include: *SusanT (I am reminded of her beautifully kind spirit every time I get into my car because I have a starburst hanging from my rearview mirror that she sewed into a birthday card she gave me the year before. I think I miss her the most) *Shelly (a Myspace phriend with a really wonderful personality, who used to send me uplifting messages at moments when I seemed to need them the most) *Stella (who sadly may have passed from cancer and not PH, but still ...

The day after Thanksgiving, I usually try to put up my Christmas tree and decorations. Well, this year was no different! Around noon, I finally got my act together and went down in the basement to see what needed to be brought up. Somehow my usual 2 boxes of decorations was put into 3 boxes, so those needed to come up first. I brought up one at a time, sitting down after each one to suck back the o2 and let my heart calm down. I heard Diane letting Frasier out at one point, and when I went back down to start bringing up tree branches, Diane was down there. She saw what I was doing, dropped clothes she had gone down there for on the floor, and started helping me. I was going to object, but I sooooo appreciated it!! After we brought up the branches, I sat down to rest a bit before I figured out which branches went where. You would think I'd have it written down after several years of having this tree, and getting confused!! But, I finally got a sheet of paper, and wrote all the colo...

There is an incredible number of companies who are interested in helping those with pulmonary hypertension. These companies are willing to help sponsor events, from small support group meetings, to large conference gatherings (such as the PHA conference held every two years). The list of companies include the following: Accredo Therapeutics - provides all FDA-approved treatments for PH, as well as nursing and pharmacy services to PH patients Actelion - developer of Tracleer (bosentan), and also Ventavis (iloprost) Caremark - offers support in nursing, pharmacy, and distribution of Remodulin and Tracleer Curascript Therapeutics - provides Remodulin and Ventavis Encysive Pharmaceuticals - developers of Thelin (sitaxsentan), which is still in Phase III clinical trials Gilead Sciences - maker of Letairis (ambrisentan), and also distributes Flolan GlaxoSmithKline - maker of Flolan Lung RX - a part of United Therapeutics which focuses on sevaral pharmaceutical products Pfizer - make...

It is Thanksgiving today, and I thought I would post some of the things I am thankful for while living with pulmonary hypertension. I hope everyone reading has a wonderful Thanksgiving, and for those of you not celebrating this holiday, I just hope you have some things to be thankful for. *I am thankful for God allowing me to wake up in the morning to a brand new day. For it is one more day that doctors weren't sure I'd have many years ago. *I am thankful for my loving cat who greets me every morning as I come out of the bedroom after waking up. I have had him since dealing with increased symptoms of PH, and he makes me happy when I am feeling crappy or down. *I am thankful for being able to take care of my personal needs without getting so short of breath, like showering and dressing. It means the medicines must be working, at least for now. *I am so thankful for the roof over my head, and the food I can get, even if I am getting help from the government to survive on my own. ...

I got up today, took a shower, and took quite some time to eat breakfast. Afterward, I cleaned the fish! And I'm sure they are all happy now!! After that, I worked on my Etsy store again. Geesh, I had a lot expire, and a lot to add. But now, I am all stocked up! I know I still want to make several more items, but at least I have over 85 things to choose from. That helps! If you'd like to see my items for sale (or just to see what the heck I make), please go here ! I also have an icon to click on in the right side, if you scroll down a bit. You can see some jewelry items, and that will lead you to my store!

Many PH patients are told by their specialists that they should go on a low or no sodium diet. Why is this? Salt regulates the balance of fluids in the body. A high increase of salt in the diet can cause water retention. Water retention can cause an increase in PH symptoms, especially shortness of breath. So, a decrease of salt in the diet would help with water retention. Every PH patient is different. For one PH patient, getting rid of salt in the diet completely is needed, whereas another might need to limit it less. Cutting back on sodium seems like it is so hard! Salt is in almost everything, so how does one do it?? Here are 5 tips found here on the PHA website on how to cut or limit salt in foods we eat: 1. Throw out your salt shaker. Do not use it in food preparation or at the table. 2. Check the serving size on processed foods when adding up your sodium intake. Purchase products with no more than 200 mg per serving. 3. Eat lots of fresh fruit and vegetables. 4. Watch out for ...

I went back to pulmonary rehab today. I hadn't gone in a couple weeks because I was sick. Last week was also so cold, and I have decided that if it's below 30 on days I have to exercise, I'm not going. It's just too cold for my lungs, and I'm not risking it! Anyway, I felt pretty good working out. I still did 10 minutes on everything like I had been, but I didn't use much of an incline on the treadmill, and I had no resistance on the stationary bike or the arm cycle. I think it went well! I didn't feel too tired after I got out. Right before I got sick, every time I got out of rehab, I felt like I was completely dragging the rest of the day. So I guess I really must be feeling better! I hosted chat today, which was a little slow at first, but then several regulars came in for a bit. Around 3, I left so I could work on restocking my jewelry site. I didn't pay attention too much to what I sold at the jewelry party, so I had to go through everything to figu...

I came across this fact sheet on what to do when you, your child, or someone you know and love are diagnosed with PH. It's a great sheet, and can be printed out if you go here . I'm just going to list the things they suggest! I wish they had this list when I was diagnosed in 1975, but really, no one hardly knew anything about PH as compared to today! 1. Obtain and maintain copies of all of your medical records in a binder. 2. Seek an evaluation at a Pulmonary Hypertension (PH) Center. 3. Read PHA’s 280-page book, Pulmonary Hypertension: A Patient’s Survival Guide. 4. Make a list of all of your medications. 5. Ask your doctor if a handicapped parking permit would help you. 6. Make a written list of all your questions and take notes when the doctors and nurses answer them. 7. Educate yourself about your health insurance plan. 8. Keep a written list of all of your doctors and their contact information. 9. Evaluate your financial situation. 10. Get education and support. **Just a ...

I have seen time and time again on the PH boards questions about needing surgeries not related to PH, and whether or not we can be under anesthesia. The PHA has a great response to this question, and while you can read it here , I thought I would post it, too. I honestly forget all the time which anesthetic is ok and which is not! It's important for PHers to know, because it can literally mean life and death! Question: What issues should PH patients consider before undergoing general surgery, specifically relating to general anesthesia? Answer: Anesthesia and general surgery in patients with pulmonary arterial hypertension (PAH) are associated with increased risk of morbid events and death due mainly to right heart failure, abnormal heart rhythms, and postoperative low oxygen levels. Successful management of patients with PAH undergoing general surgery requires a multidisciplinary approach involving the pulmonary hypertension specialist, an anesthesiologist well-versed in the manag...

Last night was the jewelry party Mandy and I had been planning for for weeks. I really wasn't sure how it was going to go, and neither was she. But, I think it went well! We had quite a few people who showed up. We had a ton of goodies to eat! We had made a chocolate fondue, and a cheese fondue. In original 1970's fondue pots!! We had a wide variety of things to dip: carrots, celery, cauliflower, strawberries, apples, pound cake, brownies, marshmallows, tortilla chips, breads, and pita chips. Joanie made this fabulous crab thing, it was very yummy, too!! We had spiked punch, and non-spiked punch! And, several wines. We also had many leftovers! When I went downstairs after I got to Mandy's house a couple hours before the party, I saw all of her stuff on a couple tables. I was overwhelmed by how much she had made. I also couldn't believe how gorgeous everything was!! She had glass pendants of all various shapes, sizes, and colors. She had glass magnet sets. She made reall...

Once a PH patient has been diagnosed, and started on meds, pulmonary rehab MIGHT be suggested, either by the PH specialist, or the PH patient (who knows enough to bring it up). Exercising is essential to keep a person's strength up, and for a PHer, this is important. The great benefit of a pulmonary rehab program is that it helps a PHer SLOWLY build up stamina. There is an emphasis on slow! I started PR in September, and I was nervous about it at first. When I walk on my treadmill at home (which is so sporadic lately, and not good!), I usually tire out easily. But then some days I do so well. My biggest problem has been consistency. It isn't good to exercise for quite a while and then just stop. The body gets de-conditioned that way, and if exercising is started up again, it's like starting all over. Pulmonary rehab has at least made me go somewhere to exercise 2 times a week, and sometimes I walk an extra day at home. Here is what I do at PR: *I get my portable oxygen set ...

In regards to yesterday's post about emergency preparedness, I thought I would expand a little about informing medical response teams about PH and your own personal situation. It is vital that this be done, because it really could mean the difference between life and death! Here are the main tips I found on the PHA website (if you click here , you can read the whole article, and even print it for reference!): *If you’re not comfortable doing your own training, contact your specialty pharmacy to organize and conduct the training for you. *Ask your EMT to put you on the BOLO, or “Be on the Lookout” list, which is a list of people who should be the first to receive attention, a check-in, electricity, or specific needs, in the event of a blackout, inclement weather, or disaster. *Ask your EMT to tag your number in their system so that if you ever call 911, they’ll be automatically alerted that you have special needs. *Introduce yourself to the staff of your local fire department. *Get ...

In the event of an emergency, PH patients really should be prepared with a variety of things needed to insure their safety and well-being. I was reading the Emergency 101 Tips on the PHA website (which can be found here ), and I just thought I would re-write the Readiness Checklist. I admit that, while I am ready with most of the information included in this checklist, I don't have everything. I need to do that!! *I wear a Medic Alert identifier to convey critical health information. I’ve included “Pulmonary Arterial Hypertension,” and such applicable information as “Do Not Stop Pump,” “On Sildenafil -No Nitrates” and/or “Takes Coumadin” *I always carry a cell phone and/or let people know where I am going if I am traveling alone. I have signed up for a roadside assistance program. *I maintain a current list of all of my medications. I’ve included concentrations, doses and rates for infusion and/or oxygen therapy. *I have a three day supply of all my medications and supplies. I keep...

I thought today I would type my good PH deed for the day! There have been workers on my street for the past almost 2 weeks now, working on the gas line. This morning I noticed that they had dug a huge hole in the front of my yard! Technically, it is the city's land after the sidewalk, but still, I wasn't pleased! So they were doing something, and around 1pm-ish, I heard the doorbell ring, and banging. I go to answer it, and no one was there, but there was a worker across the street telling me to hang on a minute. He came over, said the gas accidentally got turned off, and could he see if mine was ok? Sure, I said. He went down to the basement, did something, came back up the stairs mumbling about how it was off, and they'd get it back on again. Soon. He hoped. And walked out the door. Well alrighty, greeeeeaaaaat. My mom picked me up about 40 minutes later, and after going to the post office, we came back around my house, and stopped to ask a few workers when the gas would...

Living daily life with PH means many of us PHers need to take precautions or change the way we do things, or even skip doing things altogether. The PHA has great tips on their website for dealing with various daily activities and other things, and I thought I would go through a few of them in the next several days. Being that the weather has been getting colder in most areas, and that people have already started getting sick, I'd address that issue first! The following are a few tips about dealing with the cold season. The original article can be found here . Cold & Flu Season Tips: *Always get a flu shot! *Never use antibiotics for a cold or flu. They don't work! *Never share or use leftover antibiotics. *Stay healthy! Use disinfectant cleaner on hard surfaces every day. *Don't forget to wash your hands often. Use an antibacterial lotion if washing your hands is not available. Here are a few of my own tips for dealing with a cold or flu: *Get plenty of rest! This may s...

My PH story begins when I was born in September 1975. I had a collapsed left lung, and I was taken away before my mom could even hold me. In fact, my mom didn't get to hold me for 3 days because she was dealing with an infection of some sort. Eventually, my parents got to take me home, and all seemed fine. I wasn't gaining much weight from feedings, and because of that, I didn't get my first set of shots at the time they were usually given. My mom took me to the free clinic for them, and one of the doctors there thought they heard something with my heart. He suggested that my mom talk to my pediatrician about it. She did, and my pediatrician heard nothing, so nothing was done. When my mom brought me for my second set of shots, at the same clinic, the doctor again said he heard something going on with my heart, and thought something was very wrong. I looked bluish around the lips, and he was very concerned. So, my parents again brought me to the pediatrician, who finally ref...

The jewelry party Mandy and I are having is this Saturday, and I'm still trying to make stuff for it. I made one more necklace today, then I decided to work on earrings. I went to a website I like for beads, and they also have jewelry ideas. I was trying to find different ways to make earrings. After I gathered a couple in my mind (and shockingly didn't lose them!), I worked for an hour and a half before taking a lunch break. After lunch, I worked a couple more hours. I've got 15 pairs of earrings, to add with all the other pairs I've had already for awhile! I think that might be enough for now. The only other thing I want to work on is lanyards. I'm only going to make a couple of them, to let people know I make them. Hopefully it'll be easy enough. I'm going to try a different style so that the person wearing the lanyard can take it apart so that it doubles as a necklace to wear outside of school or work. A two-for-one product sounds sellable (is that a wor...

I'd like to talk more about support groups. While I felt like I had found gold at the end of the rainbow when I first got the PHA website many years ago, since I had never talked to anyone living with PH like I had all my life, starting an actual support group in my area made me feel like I had hit the Lottery. I admit that I was very nervous about starting the group at first. I used to teach preschool, and I could talk to those kids very easily! But talking in front of adults??? NO WAY!!! But a couple weeks after I was asked about starting a group, I finally decided to go for it! It was a new purpose in my life, something I could do to help others living with this drasted disease. My first meeting was in October 2005. I had a handful of people, but I kept reminding myself that a support group was a meeting of 2 or more people. I made the meeting a general one, explained my life story with PH, and why I wanted to start the group. Everyone shared, everyone had questions for each oth...

Many people are diagnosed with PH, and if they have access to a computer, they will look up PH on a search engine, and become horrified at what they read. There is soooooo much outdated information on the world wide web, and unfortunately, once something is out there, it's out there for good. There are, however, 2 great sites for information on PH. One is PH Central . This website contains information about PH, resources, ability to chat with others, PH Diaries written by actual PH patients, and much more. Another website that is great for people just learning they have PH is the Pulmonary Hypertension Association . This site also includes facts about PH, recent PH news from all over the world, message boards and chat rooms available 24/7, and lists of support groups around the country. Both websites are updated with the latest PH facts and news on a regular basis, unlike many other sites found out in www-dot land that won't ever update facts. I am sure these two sites offer re...

This post is about phriends, and it comes at a time that is most desparately poignant for me. What are phriends, you ask? Phriends are friends who have PH. Phriends are the ones I have become close with over the past several years while posting messages and going to chat rooms on the Pulmonary Hypertension Association website . Phriends are the people who completely get me and how I am feeling, and I can totally understand what they are going through as well. Phriends come from all over the world. While many of my phriends live in the U.S., I have also met phriends from the U.K., Germany, Canada, Mexico, and Australia. My phriends understand when I say that I'm a little sob means that I'm out of breath, and not that I'm a son of a bitch! My phriends get it when I say I got really tired because I cleaned a room or put away laundry, or went to a few stores on a chilly day. Phriends are there to comfort each other, to wish each other well if we are sick, to pray or have good t...

Here are some of the necklaces I made with Mandy's pendants, for those of you reading who wanted to see! I made a total of 16 necklaces, and all the pendants are so different! Mandy is really doing a great job! I am going to put any of the pendant necklaces we don't sell at the jewelry party on my website. Now I must go back to work and make some of my own jewelry!!