Friday, December 18, 2009
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 also the same. For one thing, I am still living here all these years, about to celebrate 11 years on January 2nd in this apartment I call home. It's gone through many physical changes: new wall colors in the living room, computer room, and my bedroom (twice in there, actually). After years of dealing with carpeting throughout the entire place, except in the kitchen and bathroom, they were ripped out to show the beautiful hardwood underneath that I just love! I can only hope and pray that maybe in the next decade, the one change I want most will happen: a new kitchen floor!! I'll keep my fingers crossed on that one!!
Other changes this decade included having to quit my teaching job that I loved, and so far, never working again. I "retired" at the age of 24 in the spring of 2000. It was never something I had even considered doing. If my PCP hadn't told me to quit, I would've just run myself into the ground, getting sicker and sicker until something even worse would've happened. So she told me to quit my job, I did the day she told me to, and I felt a little lost for awhile. I took a good amount of time to get back on my feet and feeling someone decent after being sick all that year. In the meantime, I decided to finish my grad degree that I had started, and just figure out what the next step was supposed to be.
This decade finally brought me treatment for pulmonary hypertension! I started going to the Cleveland Clinic in 2002 after dealing with worsened PH symptoms that I actually thought might be asthma. Well, it wasn't. Even growing up with this disease didn't mean I really understood everything that went with it. Since I also have a congenital heart condition, we focused mainly on my heart growing up, spending years getting echoes and making sure it was functioning well. Yes, I had PH, but no one was doing much for that since my parents and eventually I didn't know about it all that much. So when I started going to Cleveland for a lung transplant evaluation, I began learning sooooo much more about PH! My journey with oxygen began in the summer of 2002, something I was extremely self-concious about, and now I could care less. I started Tracleer in October 2003, and it was the start of a whole new way of living for me. After a couple months, I could do something without feeling so short of breath that I'd have to spend hours recovering. Even if I did get SOB, it would be a matter of minutes for me to get my breath back after I began Tracleer. What a major difference! Tracleer worked for me for many years, but in August 2007, Revatio was added. It not only helped me with more energy for doing things, but I could also tell people that I was on Viagra! I think the last part of helping me to live with PH is adding pulmonary rehab to the mix last September (2008). It has helped me so much with my daily functioning. I feel as if I have a little more energy to get through most of my days. Sure, I still have some bad ones, but they don't seem to be as often as I remember. So all in all, this decade of living with PH and congenital heart disease seems to be quite a bit better than the rest of my years beforehand! I hope and pray that it continues for as long as possible!
They say that friends come and go throughout your life, and I do agree with that. I lost my best friend this past decade, someone I was best friends with for almost 25 years. When I started getting even more sick, and not always able to do the things we used to do all the time (especially going out), she seemed to withdraw. She also didn't seem to care. When I found out she did something I found was rather nasty, I stopped calling her. The most difficult part about all this was that she lived down the street at the time, and I'd see her almost every day driving by. It was like going through a death, but she wasn't dead. Our friendship was. I grieved for all the times we spent doing things, hanging out, the secrets we shared, the tears we cried. She only tried once to reconnect, but things just weren't the same. I didn't trust her. I didn't believe she was genuine. And I actually realized she had been like that the entire time we were friends. Who needs someone like that in their life?
What I did gain this decade were several very close friendships. I treasure my friends: Erin & Eve, my best friends from high school; Renee, who I met during grad school, even though I didn't like her at first (love her now, though!! lol); Monique and Jeannie, who are my coffee buddies and occasional movie buddies; Deidre, who I met through Monique, but our friendship seemed to blossom totally on it's own after she had her accident years ago; Michelle, who I don't see too often, but her words and friendship often lift me up; and Karen, my dear friend from college who I don't see for very long stretches of time, but who is so special. These lovely ladies mean so much to me in different ways, and I don't know what I'd do without them. They have been there for me during my darkest times, when I've been sick and unable to get out of the house, they either call to make sure I'm ok, stop by if they can, or send me cards to let me know they care. They make me laugh, they try to understand even if they possibly can't, and they are my rocks. I pray these wonderful friends stay with me forever!
I have also gained many phriends this decade, people with PH who know what it's like to live with this disease and share it's ups and downs. When I first found the Pulmonary Hypertension Association website, I was overwhelmed by the posts of people who were describing everything I grew up with. I spent days reading the boards before posting myself. I joined the chatrooms. I've learned so much from the people there. I started new phriendships. I lost many phriends, the worst one this year being Mason. But despite the losses, there is always hope on the boards and chats, and in the PH community in general. I started my own support group in Buffalo/Niagara Falls, and it has been one of the best things I've ever done, not only for me, but for the people who come to the meetings. I am so thankful for being able to help others living with this disease, from posting messages on the boards, to hosting 2 PH chats, to helping those who have found my number and call because they need questions answered. I hope I am able to help others for a long time to come, because I have found it really rewarding! I may not be able to teach in a classroom, but I have found a new way to teach about a topic really important to me!
Mandy and Lisa both got married during this decade, in 2004 and 2006, respectively. Since then, I've gained a niece and 2 nephews! I became an aunt for the first time in 2005, and it's been a wonderful experience. I love my niece and nephews so very much. They are just so adorable, and smart! I hope and pray that I get to see them grow up into awesome people. They are very special to all of us already in their short times here!
I had my own "kid" right at the end of the year 2000. My furry little man has made me so happy. I've always wanted a cat growing up, but could never have one because half my family's allergic to them. So Erin gave me Mittens as a Christmas gift in 2000, and I've raised him from a tiny 2lb little ball of fur to a huge 23lb ball of fur! I love him tremendously, and I don't think of him as just a pet. He hangs out with me when I'm sick or sad, and he makes me laugh. He also makes me a little pissed at times, too, but no kid is perfect! No mommy is, either. I know I've ticked him off plenty of times, too! But he's my baby, and I'm so thankful that I've had him all this time so far!
I'm not even going to get into relationships, because I had my heart broken twice during this decade. I'm at the point now where I just go with the flow. If I happen to find someone, wonderful! If I don't, big whoop! And that's that! lol
I feel I've personally grown this decade, in how I respond to things and how I handle things. I am so thankful I'm able to live on my own, and to lead a fairly good life, even if I have to take it slower than most. I push myself a lot of times, sometimes pay for it the next day (or days), but those are the decisions I make, and thank goodness I can make them! I really hope the next decade will help me continue to grow into a person who has the strength to deal with whatever is thrown her way. I'm sure there will be lots of surprises, probably sadness, but lots of joy and happiness, too. I'm ready for whatever comes my way in the next decade!!
Wednesday, December 02, 2009
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 many of the tutors I used to work with on AOL came to PATH, but I did keep in touch with several. One of them who is still working with us is Dave. He's a pretty funny guy! What I admire about him most is the passion he has for organ donation awareness. It began when he decided one day while renewing his license to sign his card for donation. Unfortunately, organ donation hit so close to home when he lost his daughter, Carrie, when she was 18. In his grief, he agreed to let the doctors use any organs they could to save others. What an incredible gift to give while trying to deal with such a sad loss. Dave has been able to meet the woman who received Carrie's lungs, and they've really become a part of each other's lives. Recently, Dave agreed to be interviewed about organ donation where he lives, in Maryland. If you'd like to see his interview, please click here.
Organ donation is such an important part of the cycle of life. Out of tragedies, another life can be saved. When someone dies, their organs can no longer be used. Instead of burying perfectly good organs, why not donate them to continue the life of someone who so desparately needs it? Even if someone can't donate certain organs because of disease, something can be used! Skin tissues, corneas, even bone sometimes, can be transplanted. Please consider organ donation if you haven't already become a donor. And make sure you discuss it with family. They need to know your wishes of being a donor, too!
Monday, November 30, 2009
Sunday, November 29, 2009
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!
Saturday, November 28, 2009
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!
Friday, November 27, 2009
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.
Thursday, November 26, 2009
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!!
Wednesday, November 25, 2009
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.
Tuesday, November 24, 2009
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.
Monday, November 23, 2009
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.
Sunday, November 22, 2009
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.
Saturday, November 21, 2009
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.
Friday, November 20, 2009
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!!
Thursday, November 19, 2009
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!!
Wednesday, November 18, 2009
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 http://phawareness.blogspot.com/ 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!
Tuesday, November 17, 2009
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 let my family and friends know when I'm just not feeling good, because I often push myself to do something so I don't disappoint them! So, I guess in some ways, I do end up dealing with emotions with this disease!
Monday, November 16, 2009
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!
Sunday, November 15, 2009
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!!
Saturday, November 14, 2009
Friday, November 13, 2009
Oh yes, after a little while, I happened to see Mandy across the parking lot standing in line with the kids. My niece was going to get the shot (or spray, not sure which!). I'm glad I was there, since after Renee and I finally got out of the building, Mandy still had a ways to go, and the kids needed to eat. I went down the street to Wilson Farms to grab a few things, and then brought it back for them. I'm sure they were there for at least another hour!!
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.
Thursday, November 12, 2009
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. After visiting with Mary, we headed out to the Boulevard in Amherst. When we hit the Boulevard, it was a madhouse! Everyone was out for the holiday (Veteran's Day), and it was just crazy! We made our way to Joann Fabrics, where Dee helped me pick out some more cool beads. After waiting in a line that went down an aisle, we left there and met 2 other friends for coffee at Barnes & Noble. That place was packed, but Renee had managed to save chairs for Dee and I. We hung out and chatted for awhile. Well, they chatted. As soon as I sat down and was able to relax, I started feeling so tired. Grrrrr!! I had a good time anyway! We left, and on the way home, Dee and I decided to have dinner at a restaurant called Zebb's. It was yummy, I was way stuffed, and by the time I dropped her off and got home, I was ready to go to bed. It was only 6:30 though!! I did stay up for awhile, but today I'm feeling it. I went to rehab already, and now I'm just going to relax and try to make a few jewelry pieces. I was happy that overall yesterday, I felt pretty good!
Wednesday, November 11, 2009
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.
Tuesday, November 10, 2009
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!!! http://pahconnect.com/Questions.aspx
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!!
Monday, November 09, 2009
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!
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 her, and even though we don't talk too much, I am sad she lost her mom. It's hard losing parents. I haven't had to deal with that yet, but I fear it all the time. I have a feeling losing one of them is going to be so bad for me healthwise. But, I hope not to deal with that for a long time to come.
I also found out today that a phriend passed away on Friday. Seaspritemo was Tanya's nickname on the PH boards, and when I first met her many years ago, she was so funny and caring. Tanya and Brenda, another phriend who passed last year, were the first two in the PH chatroom that made me feel so welcome to this new community that would soon become a huge support system for me. Tanya was unable to come to chat for a long time, and her postings to the board were sporadic ever since she quit her job almost a year ago. She used to email me quite often when she was working, and I missed her emails. But, I talked to her a few times over the year to check up on her, the last time in June when I told her we lost Mason. She was saddened by that news. I kept meaning to try calling her again to see how she was, and now I'm sad that I never did. Tanya will be missed, but I know that she is no longer suffering from this damn disease.
Sunday, November 08, 2009
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 http://www.phassociation.org/Find_A_Doctor/.
Saturday, November 07, 2009
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!!
Friday, November 06, 2009
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.
Thursday, November 05, 2009
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!!
Wednesday, November 04, 2009
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 detectives, and if you are a fan of SVU, you know the character Munsch. Well in SS's SLU unit, there was a puppet that looked exactly like Munsch!! It was so funny! They also had the infamous "chum chum" noise that is in the tv series. They were making fun of it as being annoying by the end of the SS skit, and I couldn't stop laughing. Of course, my nephew didn't get any of that, he was busy watching them trying to find the missing M!
I put another show on for the little guy, and got a phone call from Accredo to reorder my Tracleer. I took off my o2 so I could go into the kitchen (I know, doesn't make sense, but I also had to blow my nose after the phone call lol). After 5 or so minutes, I started going back to the living room, and I saw my nephew holding up the cannula to his nose trying to breathe. I don't think he actually had it up his nose, but he knew enough that that's how I wore it. I just walked over to him and told him that was only for Aunt Colleen to help me breathe, and that he didn't need to have it on. He dropped the cannula and went over to the other side of the couch. Of course, I took the o2 right into the kitchen and washed and antibacterialized the heck out of the cannula before I put it back on!! lol Wish I had taken a picture, but I didn't think of it!
Tuesday, November 03, 2009
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.
Monday, November 02, 2009
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 knowing that he is really gone, even though it's still a bit hard to believe.
Sunday, November 01, 2009
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!
Friday, October 23, 2009
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 using THAT much energy?? I couldn't believe the drop!! Of course, I still owe $141 because of the budget plan, but at least I have it for this month. I just couldn't believe it went down that much. So now, I really want to see November's bill because I've been using the heat here and there, and I wonder how much of a difference that'll make. I still plan on keeping things unplugged, though. I still need to get myself a power strip to plug the tv, VCR, and stereo into, so I can turn them all off. I only use them at night (the stereo hardly ever anymore). Every friggin thing I can do helps!!!
Saturday, October 17, 2009
Thursday, October 15, 2009
Lately, however, I've been having a very hard time paying for the rehab classes. It's $36 for 8 sessions, which ends up being about a month if I keep going both times each week. I did ok paying for it for awhile, but by the time this summer rolled around, it was getting difficult. I wouldn't go just to stretch the sessions (thankfully if we don't go, we don't lose the session), and try to exercise at home. So finally, I found out on Tuesday about a cardio/rehab center in Another hospital that I wasn't aware of. After talking to one of the RT's there, I learned that there is a financial assistance program at Another that could possibly help pay for my rehab for a year. I went to the rehab gym on Wednesday after I got my labwork redone. I walked from the main hospital all the way to the heart center, and let me say, that could easily be rehab for me!! The 2 RTs in the gym were wonderful ladies, and I spent about 20 minutes talking to them, explaining my situation, educating them about PH, and my low o2 sats. I thought I sensed fear in their eyes, but I could've been wrong. LOL I told them I'd figure out my situation and if I needed to apply, I'd let them know. I hiked myself back to the other side of the hospital and into my car, and wow, was I tired!! There were 2 things that bugged me the most about having to make the visit to that rehab gym: 1) I didn't want to leave the people I was already working out with!! 2) The parking is horrendous for this gym!! No valet like at the hospital I go to now, and nothing but luck trying to get a close spot. Even though the possibility of free rehab was there, I really really didn't want to have to end up switching.
So, Thursday, I get to rehab, determined to ask one of the nurses in the gym whether they had a similar financial assitance program at St. M's. When I did ask, she said yes, but not for rehab. I told her my situation, and about the possibility of switching to Another, and she felt bad about it but said there wasn't much they could do. I was bummed. So I walked with my chart to the table to start exercising, and my one friend there asked me how I made out with talking to Another. I told her about it, and I told her I had just asked if St. M's had financial assistance, but they don't. She said that was too bad, however, Sister M. (who also exercises with us) was going around the hospital finding people to possibly help me with my situation. I thought that was very sweet of her! My friend also told me that if nothing could be worked out with St. M's, then she'd help pay for my rehab, and so would a few other people. I told her absolutely not! Of course, she scoffed at me and said she could do what she wanted because she wanted me to stay there. She kinda waved her hand at me as if to say, Be off with you now, I will do what I want! I just didn't know what to say. So I walked off to the treadmills to start my routine.
Sister M. came into the room about 15 minutes later, and came over to talk to me. She had a very serious look about her, a stern look on her face. She showed me a name on a piece of paper she had, and told me that I MUST go speak with so-and-so in the ER, and I MUST tell her my situation, and I MUST keep coming to rehab because she just KNEW it was helping me! She was adamant about it. I told her I would, and I thanked her for the info. I hurried to finish my exercises, mainly because I didn't know whether this lady was going to leave at noon for lunch, but also because someone came in to exercise and was wearing a ton of perfume. UGH!! My lungs wanted to take off and run. Anyway, I got finished, went down to the ER and asked for so-and-so, and waited for about 20 minutes to see her. When I did, I told her my story, educated her a little on PH (hehe), told her how much rehab has made a difference in my life, but if I couldn't get any help, I was unfortunately going to have to switch to Memorial to continue rehab there. So-and-so asked me about my income, which is SSD, asked if I had any other monies coming in (ok, come on, if I did, I wouldn't be asking for help!!), and proceeding to complete an application for assistance with St. Mary's programs for a year. A year of free rehab, was what this was amounting to! She printed out a copy of the letter, which I am to show the cashier's office when I need to pay for rehab again, and I told her how much this meant to me!!
I left so-and-so's office with tears of happiness, because I just felt soooo very relieved to be able to have rehab free for a year. I was tremendously grateful for Sister M.'s persistance, and I really think she was my angel for the day. I do believe God answers prayers in ways we never would have imagined, and when this worked out, I felt mine had been answered with the help of a nun who was determined to keep me in rehab one way or another!! So now the only things keeping me from going to exercise with my friends is a cold, or freezing cold temperatures!! I don't really have another other excuse to put it off!!
Sunday, October 11, 2009
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 something she didn't really care for so I wouldn't have to search more for something different. At least it wasn't something that needed a deadline!
I am still battling cold feet. Although, I have to say that I am dying of heat right now. I took a bath earlier this evening (2nd one of the day, and I even took a shower this morning), and put on my flannel pjs, my bathrobe, and I've been under flannel blanket, with the laptop on my lap. I really should do this all day, I guess, if I want to be warm!!! It's really getting to be frustrating, but I do hope that it gets better once I can put the heat on all day. I'm not doing that right now, I only turn it on in the mornings for a little bit. I might actually email my PH doc about electric socks or something like that. I have heard several times before that people with circulation problems shouldn't use things like that. I think it has to do with dropping blood pressure. It's why we're not really supposed to be taking hot baths and going into saunas or hot tubs. Well if someone told me I'd have to skip my hot baths, they'd get an earful. That's the only way I warm up!! lol
Well, I'm off to bed. Get to start the cold feet battle all over again tomorrow. Fun, wow!
Sunday, October 04, 2009
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 wanted to get some of the Wallflowers they sell for a coworker's housewarming party, so I helped her pick out a few we thought she'd like. We finished smelling everything and went over to Old Navy. Sometimes I hate going shopping. I found a pair of brown pants that I really liked, but I have no money, and so I just had to walk away. I even contemplated using my credit card, but I didn't do it since I still would have no money to pay for it! So I wandered the store and helped Joan look at things she might want to purchase. We left the mall a bit afterward, and I realized it felt a little warmer when we got back outside. The entire day was cold, wet and crappy, and it was a bit rainy as we were out, but the weather kept getting a bit warmer every time we went into a building and came back out! Kinda nice!
Walmart was our next adventure! I had a few things to get, and Joan needed a couple cards. We wandered around the store looking at things. I got a couple gifts for my niece. I'm getting close to finishing Christmas shopping, can you believe it?? Oh I still have some things to get, but I'm pretty happy that I've gotten so much already! Anyway, my biggest mission was to buy more socks for the winter. My feet have been freezing already with the cooler weather. It's ridiculous. I have been taking quick baths to warm up my legs and feet, sometimes twice a day. I bought a 10-pair pack of socks for $6. When I was at Kohl's last Sunday, they had socks on "sale:" 3 pairs for $6. I just KNEW I could get them cheaper at Walmart!! I also bought 2 pairs of fuzzy socks, and I am thinking maybe I'll go back and buy a couple more at some point. But even with all the socks, my feet are still cold. It's getting annoying!! We left Walmart and stopped quickly at Tops, and then Joan dropped me off with all my goodies. It was a nice evening out!
Saturday, I got my flu shot (my arm still hurts from it), and then I hung out at Mandy's for a couple hours. The kids had lunch, and my niece showed me her dress for a wedding she was in last night. It was beautiful, and she pointed out that it was my favorite color, red! After putting my nephew down for a nap, Mandy and I painted our nails with polish she had taken out. My niece was very interested in what we were doing, and asked if she could have her nails done, so her daddy did them for her! Just a very very light pink, which almost looked like it was just a shiny coat. It made her happy, though! I left a bit later to go to Joann Fabrics, and then took a nap after I got home. I had dinner at my parents' house, and after Mandy got ahold of me, I went to her house again to babysit the kids after she brought them back from the wedding reception. I laughed my ass off at my nephew (who is 2) as he frantically tried to tell me about a racoon who ran away. About 500 times in the next 20 minutes. It was hilarious!! I wish I had a camera to record it. He was absolutely serious about it, and I think he actually got mad at me for laughing at him because his little face showed some frustration!! The kids were tucked into bed, and I spent my time online while Mandy and Ron had fun at the reception. I ended up back home and in bed around my usual bedtime, but I was really exhausted!
Today was relaxation morning/afternoon until I went with Joan to her friend's housewarming party. That was fun! I know most of the people Joan works with (her friend is a coworker), and I met a few more I didn't know. There was a ton of wine and vodka, and lots of goodies to eat. We were there for a few hours, but I had a really bad headache because of the cigarette smoke coming from the back deck when a few people were out there smoking. YUCK. When I got home, I took a long nap! I've been on the laptop ever since, answering emails, joining PH chat for a bit, and chatting with a friend. It's been a nice quiet evening.
I plan on cleaning a few things around the house tomorrow, but I really must get back to making jewelry. I only seem to spend one day a week making stuff, which is not nearly enough time to be spending if I want a LOT of things to sell. I get so aggravated with myself, yet I'm not doing much to change it!! So I need to "clock in" to work tomorrow and make some new things!!
Saturday, September 26, 2009
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
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,
Thursday, September 17, 2009
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
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
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!
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!
Monday, August 31, 2009
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.
A few hours later, I went upstairs to ask her if I could make dinner for her or something. I just feel so terrible about Frasier. She broke down sobbing again and I hugged her for a few minutes. She said she did everything she could to help him, but he just kept getting worse this summer. She tried puppy Prozac, that did nothing to alleviate his anxiety. And she said the last several weeks he had started pacing constantly, getting up and barking at night (which I heard sometimes), and just not doing well. I had no idea, because every time I saw him he seemed like he was ok. She must have been thinking about putting him down for awhile though. She said on Saturday when she had left the house, if she came back to him barking, she was going to have to put him down. He really did bark for at least 5 hours, and was still barking when I had left the house and came back. So, she put Frasier down herself this morning at the vet's office. She is a euthanasia tech. I think it would've broken my heart to do that myself! I just pray she is able to heal from this. He was 12 years old (I didn't realize that, he didn't act like a 12yo dog!), and lived a good life. And I told my neighbor that I knew Frasier just adored her because he always wanted her around him! I think she just needed to hear that so she knew she made the right decision! So, rest in peace, little Frasier. You were a cute little dog, and I did become attached to you, too!
Saturday, August 29, 2009
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 Helios! One has to be really careful because liquid o2 is freezing, enough so that it can cause burns if not careful. So I was shown how to fill Helios, and then Mike (?) asked me to wear it for awhile to just see how long it would actually last me. So, I had it on from 2pm until about 9pm and it was still puffing. However, I don't think I really understood how to tell if the Helios was empty. So I may not have actually gotten 7 hours out of wearing it. But even 5 hours would have been fine with me, because that's about how much a tank used to last. I guess I'll just have to test it again!
I named my Helios: RD (pronounced like Artie). It's short for respiratory device. LOL! RD traveled with me on my first outing to the grocery store about an hour after I had him. It felt sooo weird to just be bringing RD with me, and sticking my license, EBT card, coupons and my phone in my back jean pockets. I don't think I'll really be using my big Targét purse/bag anymore! I mean, I can still stick RD in there if I wanted, but the thought of having a smaller purse is soooooo appealing!!!! Of course, this means that people are going to see me carrying oxygen. But you know what? I am pretty much past the "Oh my goodness, people are going to stare at me!!" point. That was me 9 years ago when I made my first outing with the tank. Now it's more like "Oh yeah, I'm wearing o2." Or, "I'm wearing o2, so what??" So, if people have to see my carrying around cute lil RD, then so be it. I cannot care what people think!! So, I'm hoping to be able to get a purse soon! My birthday is coming up next month, maybe I'll get some gift cards!!!
For those of you not familiar with liquid o2 and what it looks like, here is an example of the 2 reservoir tanks I have, and the lil Helios! Maybe I'll try later to take pics of my actual equipment!
Sunday, August 23, 2009
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 the date of the letter to cancel without penalty. THANK THE LORD!!!!! After going on National Grid's website and looking up their service rates for the entire year, I realized that the highest their rate ever got to was 9 cents. NINE CENTS. And here I've been locked into 11 cents all this time!! What savings was that????? I immediately called, and tried to be nice to the woman I was telling to cancel my account. She didn't quite believe me that their outrageous plan to keep people locked into a price was just stupid. Anyway, she finally listened to my third request to cancel my account, and said that it would come off within 2 or 3 billing cycles. Ugh, fine!
Two weeks after cancelling, another US Energy Savings representative came to my front door. First of all, this guy looked like he didn't give two hoots about his job. He referred to his clipboard as he was talking to me, only looking directly at me when he asked to see my electric bill. Here was the exchange:
IR (Irritating rep): Ma'am, I need to see your electric bill so I can see if we can sign you up for big savings with our program.
Me: I just cancelled my account with you guys.
IR: (with a slow appalled glance at me, not the damn clipboard) You did?
Me: (I couldn't take this guy anymore, so I was completely rude) Yes, I did. You guys didn't save me anything and cost me a lot of money I didn't have.
IR: (referring to clipboard) Well our program is meant to help save.....
*he gets completely cut off by me in an even nastier tone*
Me: Sir, you don't have to keep talking because I am still not going to sign up again for this program.
IR: (after glaring at me) I wasn't going to do that ma'am. Have a great day.
Me: I turned around and shut the door.
I did get my July bill, and US Energy was still my supplier that month. Total cost for just their supply of electricity was $66.25. That doesn't include National Grid's basic service! I got my electric bill in the mail on Friday, and I was dreading opening it, but also hoping that I'd see better changes. I opened it, and saw that National Grid was my supplier once again.....at currently 4 cents a kilowatt!!! My total for supply this month? $22.96. Yes, that's a $43.29 cent difference!!! It really makes me mad, and makes me wish that another US Energy Savings person would come around to ask about signing up for them!!!!
Despite the fact that my bill dropped by 40 bucks, I still would like to get liquid oxygen. Now that I'm pretty sure I'll probably switch to it, I just have to figure out when! I'm not too sure about this week, if my sister and hubby can get the daybed. I guess I'll just have to see how it plays out. I'm looking forward to more savings, though. Heck, even if my electric bill drops another 20 bucks, I'd be happy!!
Wednesday, August 19, 2009
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 furniture!! However, since I'll be giving my daybed to my niece very soon, there will be room in the jewerly room! So when the o2 guy was here delivering my o2 tanks today, I asked him about the liquid o2. He feels that I'd be able to get 2 units since I'm on 3L, and that I could fill a Helios portable, but I'd only last a few hours with it. I posted on Facebook and the PH boards asking about liquid o2, and it seems that many who are on high flow rates are able to last much longer with the portables than what the o2 guy told me. So I'll try to call tomorrow afternoon at my o2 company's main office to ask more about the liquid o2 option! I really do feel I'll end up changing, and if it doesn't work out, I know I can change back!
I've also got some decisions to make about my jewelry, but I just don't want to say much about that yet until things are finalized. There might be something in the works. I just hope it works out, but we'll see!
I've also started making decisions about.....Christmas gifts!! And yes, I have 4 already! Whoo hoo! I know, people think I'm nuts, but I start shopping early since I already have some money, and I just like to!! This year, we decided to draw a name of one person to buy for, between my sisters and brothers-in-law, and Rick. So I'm focusing on my BIL, Brandon! It's made it a bit easier to shop, since I don't have as many people as before. I just like to do things early so I'm not out there shopping with the crazy people right before the holiday!!
Well, now I've decided to end this blog post! Until next time!!
Monday, August 10, 2009
Saturday, August 08, 2009
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 was soooo much more room to walk around, instead of watching out for people on the cramped sidewalks. There are thousands and thousands of people who come to this every year, and it's always been such a problem with trying to walk around and worry about cars in the street. I don't know why they didn't close it off to traffic sooner than this, but I do hope they keep it up!!
So anyway, we got there, and started walking, and mom saw a yard sale and gravitated toward it. Joan and I tried to tell her to stay away, but mom said she'd catch up with us. Well, I had a feeling Joan and I shouldn't have gone too far because we ended up losing mom and tried to search for her for 45 minutes!! We were so aggravated that we ended up going to this one shop that had wine tasting so we could taste something!! We actually got carded! LOL Well, I finally spotted mom and took off like a rocket to make sure we didn't lose sight of her again, and when I caught up to her, I asked her where she had been!! She actually had walked almost the whole street! Argh! Well, we finally started walking TOGETHER, and ended up having a really nice time.
Another new addition to the festival was street musicians! It was neat hearing different types of music being played in certain sections. Another "why didn't they think of this earlier??" kind of thing!! My favorite was this marching band group, who played really lively music and kinda sang, too. They weren't dressed in anything costume-like, just street clothes, and they were fun to listen to! Then there were these 2 young boys singing a lot of old songs and playing acoustic guitars. They looked like they were young teens, and they were pretty good! So I definitely liked the music aspect of the festival as well!
In all the years I've gone to the art festival, I have almost never bought anything there. There are so many things usually out of my price range, or I just haven't seen anything I really liked. Well this year, I bought 2 things!! I bought my first Christmas present! I can't say what it is though, even though I now the person getting it doesn't read my blog. One never knows! lol I also bought myself another ring. It's pretty, it's made of glass. Yes, I know I have a sistore who makes gorgeous glass stuff, and I already have a ring she made for me! I couldn't help it, I loved it! I will have to take a picture of it soon. I'm just happy I was actually able to buy a couple artistic pieces, and not just a water bottle!
Going to the art festival is a bit of an anniversary of sorts for me. It's been 8 years since I've had to wear oxygen 24/7, and my first public outing with it was the art festival 8 years ago! I can still remember that day, and how I really didn't focus on anything b/c I was so worried about what people were thinking about me. I realized today, while searching for mom, that I just didn't care that I had it on. I'm so used to it, I don't even think about it anymore most of the time when I'm out. I never thought I'd get over that, but I did!!
Well, I need to put my achy legs to bed, since I decided I wanted to walk around the festival in sandles, and not more comfy sneakers!! Despite the achiness, I really did have a great time at the festival!
Thursday, August 06, 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 again, and I asked her if she wanted me to drive b/c she was freaking me out!! She said no, and the trip ended up being ok after that. We ended up getting back to Niagara Falls around 6ish, and had dinner at my parents' before dad dropped me off with all of my stuff. Mittens was beyond happy to see me!! Boy, he was chatty!!
On the trip back, I found out about the death of another phriend, Patti. I am sad to hear she is gone, but she was just soooo sick with cancer as well as PH. She fought a very long and brave battle. She sounded like such a trooper, trying so hard not to complain because she felt what she was going through didn't compare to what others were dealing with. I consider her one of my heroes. She will be very missed.
I've been busy since I've been home, trying to straighten things up around here. I got a lot done today, after getting a new door put in, and exercising! The weather was on the cool side, and I think it helped, even though I don't like wearing jeans and a sweater during the summer! Yesterday I went to rehab and then to lunch with my o2 friends. I wasn't planning on going b/c of my lack of funds, but my one friend told me she had planned on treating me to lunch, and wanted me to go really bad. How could I say no?? I thought it was rather nice of her! On the way home from lunch, I stopped at the cemetary to say Happy Birthday to my Grandpa S. If he were still with us, he'd be 103! He also would not be a happy camper if he were still around!! lol Tomorrow is more rehab, and I really have to straighten the spare room out. It's gotten to be a landing place for various things, and I don't like it! Hopefully I'll have enough energy to do it, I think I used a couple of tomorrow's spoons to get through today! I'm off to bed now, though!
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 go, but the death of another friend I used to work with almost a month after he died has also hit me. They both died way before their time. Of course, in God's eyes, it probably was their time to go. I makes me look at my health condition and question when I'm supposed to go. if you read info and statistics on people living with Eisenmenger's, their life span is definitely not much longer past 50. Add PH to the mix, and who knows? I am feeling pretty good these days, but who's to say it's going to stay that way? I guess it's just a lot of fear. I'm trying to handle it, but perhaps talking to a professional again will help me once more.
Well, as usual, plans didn't exactly happen the way they were supposed to. I didn't go to the creek. I guess I probably won't, since tomorrow morning is supposed to be rainy. Mom went and said there is water flowing. She likes to take a rock from the creek to bring home for her garden, so she did get one. I was too tired to go with her, and when I woke up from my nap, it was too warm to walk out there. Oh well, maybe another time.
We also didn't get to visit Uncle Eddy. By the time Grandma was ready to go, we had time to get to 4pm mass in Elmira, as long as we didn't go to see him. He was at mass, though, so mom got to say hello for a few minutes. I think he's 88?? Someone said something about turning 89 soon, and I think they were referring to Eddy. Anyway. We drove back to Grandma's to pick up a couple things, and then went to Beverly's.
Another plan that didn't work out was asking Beverly about hosting a jewelry party. She said she didn't do those type of things, even for me. It took me back a bit, but oh well. I tried!
Dinner was good, and we sat around talking for awhile. I hung out with my cousin, Tori, for a bit before we left. I can't believe she's going to be a junior in high school already! Her sister, Jessie, will be a freshman. She is extremely gifted in art. She can really do well with people. I'm really impressed!
We got back to Grandma's near 10pm, watched TV, and then I chatted with Joanie for awhile. Now I'm off to bed and really hoping for a better sleep. I don't want to be sleepy on the ride home because I need to make sure mom is keeping her eyes on the road!
Wednesday, August 05, 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 The Lovely Shop, so she still calls it that. It's a store that has high-end used clothing for a bargain! After I talked to Lisa on the phone in the van, I went in and browsed. I did find a pair of swishy pants for working out and/or relaxing. Bargain price - $3! When we left, mom drove down the street Grandpa K. used to live on, and showed me his house. Several family members lived in three house next to each other. They still look pretty nice.
Now we're back at Grandma's, and I'm pretty sure I"ll be crashing in a few minutes. I had a fitful sleep last night and early this morning, complete with some whacked out dreams. One of them involved my ex-boyfriend. I soooo can't understand why I dreamt about him. In the dream, he had seen me doing some things I'm not going to describe, and when he was able to talk to me, he just wanted to warn me about who I was hanging around with. Then I proceeded to tell him that even though our relationship wasn't all that great, I thanked him for being there for me when I had to quit my job. He was more supportive to me back then than my ex-best friend. It was just a very bizarre dream! So needless to say, a nap is welcome right about now! I just hope I can get an ok rest!
We went to dinner at a restaurant in Elmira called Moretti's. It's a fancy type of restaurant that seems to be in a not-so-great section of town. It was a nice dinner, though. I saw Uncle Paul, even though it seemed he hardly said two words. But, that's just how he is. Ryhan was fun to talk to, and it felt like we had the most conversations going on at the table! Afterward, we all went to the Holiday Inn's bar/restaurant to meet my Uncle Bob (Ryhan's dad) for a drink. Aunt Beverly and Aunt Jane met us there awhile later, and we had quite a good time! There was a trivia game thing going on, so we were trying to answer questions, and enjoyed the music in between them. I know Grandma didn't really want to stay, but what kept her from complaining was the giant TV screen with the Yankees game playing. She was happy! We eventually left, dropped off Aunt Dolores, and went back to Grandma's. I read a magazine and watched a design show with mom, and now I'm all ready to get to sleep rather shortly. Tomorrow's our last full day here, and I'm hoping to relax a little before going to Aunt Beverly's for dinner. Trip to the creek?? Maybe!
Oh--I took a ton of pics of the rooms in Grandma's house. I just felt like they should be captured on film. Many things have changed, and many things haven't. I just wanted to take pics to remember her house and the times we spent visiting here.
*Pics may or may not be posted here.....there are a lot, and might be boring!! lol