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Showing posts from 2010

Almost Strike Two

When I got up (late again) this morning, I fired up the laptop and got Mittens' breakfast while I waited for it to load. I went to Facebook to see if Lisa had updated anything about coming home. I didn't see a particular message on her wall, but I did see that she had commented to a friend that she wouldn't be making it home. I was really crushed. I spent most of the day just really feeling bummed that she wouldn't be making it, and that this Christmas just didn't feel like Christmas at all this year since we couldn't celebrate it as an entire family. I lazed around for the longest time, but finally got to doing dishes and cleaning up some of the kitchen when my mom called me. She told me that Grandma and Aunt Joan were on their way, which I already knew from talking to my Grandma earlier in the morning. And then she said that Lisa and Brandon were making their way home, too. WHAT???? I swear I lit up right then and there with a huge smile on my face! They were…

Strike One

I got up late this morning, got dressed, fed Mittens, and put a load of laundry in the washer before I finally decided to try Lisa to see if they were able to leave on their trip up here. I called her house number, and she answered on the third ring. Boooooo. That told me the trip so far was a no go. It had occurred to me overnight that we haven't even seen Lisa and her little family since last Christmas. The thought that they may not make it at all if the weather isn't better tomorrow is a bit more bothersome than I'd like to admit. I'm praying and crossing everything I've got that they can make the trip tomorrow, or else they aren't making it at all.

Today was a cold one, so I just stayed home and did 3 loads of laundry. In the afternoon, while using the laptop, I sorta had a hard time seeing and concentrating. Then my head started killing me. I had gotten a migraine that snuck up on me! Usually I see an aura first, but not this time. I had to take an Excedrin…

Almost Time

In several hours, it will officially be Christmas. I really can't believe the holidays are here. It didn't seem like it took all that long from Thanksgiving until now for the day to arrive, but bam! It's right on the doorstep! I'm looking forward to the upcoming gatherings with my family, especially after tomorrow since Lisa will be here with her little family by Monday night. We'll get together for an appetizer dinner tomorrow, but our Christmas celebration, complete with a dinner outing and opening gifts, won't be until Tuesday evening. So it's like we get to have Christmas twice. :)

When Christmas passes, there's just one more week until a whole new year begins. I have been thinking back on this year a lot lately, and I while it's been a pretty good one, I do realize I'm still grieving Euan's loss. It's been over 9 months since he died during his surgery, and I still cry sometimes at night wishing he was here. I never expected to lose …

Busy Days

I think I left off wondering whether or not I'd be stepping out of the house on Thursday. Well, I did! I just didn't make it to rehab Thursday morning. I had a slight headache, and I knew I had other places to go, so I didn't want to overdo it. When it's cold weather out, I don't have the energy to just push myself anyways to do the things I want to do. I tend to be able to do that a little bit more when it's warm out, but definitely not this time of year. So I went out with my mom. I had a package of jewelry to mail out (a rather large order, I was surprised when I saw the email for it!), and money to put into my credit union, and then we had a quick lunch at Wendy's, and headed to Mandy's house for a bit. We stayed there with my nephew while Mandy picked up my niece, and shortly after they got back, we went to Napa to get a gift for my dad. We had planned on going to Walmart, but it was getting late in the afternoon, and my mom needed to get home to s…

Hoping To Escape

I've been in my house since Friday night's grocery trip. I didn't really care at first, because the beginning of the week was brutally frigid. But I really need to escape from this place! I have many places I need to go to finish holiday shopping and stuff. The temperature is supposed to be mid-20s tomorrow, which I suppose I can deal with as long as the wind chill isn't bitter. I'll just have to make sure I get my butt up early enough to check the conditions and decide whether to go to rehab and elsewhere. I know the weekend will be in the 30s, which is better, but I really hate being out and about on the weekend during the busy shopping season. It's hard for me to find close enough parking sometimes, and fighting the crowds can just be downright exhausting. Sooooo, crossing my fingers that it'll be somewhat tolerable for me to go out!!!

Stocked Up

With more bad weather and bitter temperatures coming starting tomorrow, I knew last Thursday that I really needed to take advantage of the 30 degree temps that would be sticking around for the weekend. I seriously needed to make a grocery trip, and since I really don't like to be in the stores on the weekend this time of year, Friday was going to have to be the day to go out. I had asked my mom if she could go, and she said yes, but she just wasn't sure when. My parents had taken their dog, Shelby, to the vet's on Thursday for an operation on her foot, and Shelby ended up needing her toe removed. She also had a tooth extracted, and a couple of spots removed from her ears. The poor thing! Shelby is 14 now, although she still has some days where you'd think she was way younger. And of course, she still looks like a puppy because of her small size. Well anyway, my mom didn't want to leave Shelby alone at home, so we ended up waiting until the evening to go out for foo…

God's Special Angel

My friend, Erin, called me on Sunday evening to let me know that her niece, A., had passed away the night before. A. was 10 years old, and had died from complications of pneumonia. She was a special needs child, with many health issues over her short 10 years, including almost always being in a wheelchair. I didn't always get to see A., but when I did, she always had a beautiful smile on her face. She was so innocent to life, she saw joy in so much around her when any other person may have let that joy escape unnoticed. I was really surprised when Erin told me A. had died, it was just nothing I was expecting to hear.

Today was the wake for A., and despite the cold temps, I bundled myself up to get myself to the funeral home. I wanted to be there for Erin, who has no words to describe how she's feeling, and for A.'s family. I didn't realize exactly how difficult it would be to go to a wake for a child. I wrote a short memory of A. for the parents, and then went to view t…

Early Winter Blahs

I say early winter in the title, but winter doesn't officially start for another 2 weeks. Tell that to snow and the bitter wind temps outside. Niagara finally got some snow yesterday and today, and the weather was in the 20s today, with a wind chill in the lower teens. I didn't bother going to rehab today. My rehab ended up being laundry, and going up and down the stairs several times to get four loads done. I also changed the bedding, and cleaned off the kitchen table. Quite a busy day, but I took almost six hours doing everything, and I still got a nap in afterward!

Anyway, back to the dismal weather. It's funny how a handful of degrees can make a difference in whether I venture outside or not. All last week, the temperature was in the 30s, with a couple of days in the beginning of the week feeling almost like spring. I didn't mind going out, and I'm glad I got so much done last week. There are still more stores I need to go to, but now the weather plays a huge fa…

'Tis the Season

Last Sunday was the start of a very busy week I ended up having, where I spent every day except Monday out of the house for at least a few hours. Sometimes that isn't a problem, especially in the warmer weather when it's not so bad. But since we're now in December (which I find hard to believe), the weather plays a huge role in my adventures outdoors, and if I have to go out, I am usually really tired by the time I get home. I have to bundle up, including long underwear, double socks, turtlenecks, sweatshirts or sweaters, and then add on the coat, hat, gloves, scarf, boots. It's a pain in the butt. Factor in a wind chill, and depending on how low the temperature feels because of that, I won't leave the house at all. This is why I really don't like winter! I find myself staying inside more than being out.

So, last week involved going to rehab twice (I really do hate missing it, especially this time of year, so I try to make it as much as I can!), hanging out at M…

Racing Up

I had a dream last night that I was participating in a couple of races. One was 700m (meters or miles, wasn't really sure!), and the other was 830m, which seems like a very odd number. But that wasn't the only thing weird about these races. They weren't along the path of a typical running race, they were up staircases. I had to run up stairs. STAIRS. Stairs are not a favorite of mine. Sure, I can do a couple of sets of stairs if I take my time, but this race was in a huge building with tons and tons of stairs. Stairs are daunting to me if I have to go up alot of them and there is no elevator to help me avoid them. So the 700m race starts and all during the race I kept going up the stairs, and I felt so tired, but somehow at the end I had managed to win. Then came the 830m race, which was a bit trickier. Some of the staircases were being worked on and some of them were almost completely gone, making us have to figure out how to keep going up. When the race began, I bolted. …
A lung transplant is usually a last resort for a pulmonary hypertension patient if all other meds are not working or have stopped working well. It is up to the PHer if they want to go through a transplant or not. Having a transplant may mean a cure from PH, but it is not without problems. However, there are many PHers who have survived for many more years with their new lungs!

I have had many phriends who have either had a lung transplant many years ago, or who've had one recently, or who are still waiting. There are some who are doing well, past 10 years with their new lungs! There are a few who didn't make it past a few years with their new lungs. Many phriends who have faced the transplant option have decided to go for it, but I do know a few who do not want to have surgery. It's a personal choice, because it's really trading one disease for a whole other set of problems. But for those who get through transplant and recovery well, their lives change so much, and they…
All day events with no rest usually make a PHer pretty tired. I suppose anyone could be rather tired from something like that, but for someone with PH, it usually means the next day is already planned as a rest day. Today was one such day for me, although it was a great day! The holiday event went well, and most of the people who bought things from me were people I already knew. But that's ok! It was fun, though, talking to people she's never met and selling something to them. Makes me happy! At the end of the event, since we had one last minute person added to the group, I was given $15 to donate to the PH Association instead of everyone getting a dollar back for the purchase of a table. I thought that was so nice! Now I'm home for the evening, and taking it easy!! This week I'll be able to work on orders that I've gotten in the past week or so. I'm so thankful to be keeping busy!

Thanksgiving

When someone with PH eats waaay too much, they get increased shortness of breath. This is because the stomach is so full that it's pushing everything up and the lungs get more constricted, making it a bit harder to breathe!

This is what happened to me on Thanksgiving! lol Our family went non-traditional this year. None of us really felt like cooking the huge meal, so we ordered Chinese food instead. We had to buy it the night before, so it did end up being a bit of work trying to fit everything into glassware that could be shoved in the oven to reheat, or into something microwaveable. And of course, we had sooo much food! But it was a great meal, and everyone enjoyed it and the company! Mandy came over with her little family to have dessert (we still had pies!), and it was a very nice evening spent with my family. I don't think it matters what we eat on Thanksgiving, as long as we are together and having a good time is what counts!

I got home from my parents' and took a bath…
Living with PH means trying to avoid stress. Stress takes a major toll on our health and can make us sicker and keep the meds from working properly.
There are times when a PHer has a very good day, in which they sometimes try to do everything on their "To Do" list that they can't do when it's a bad PH day. This, unfortunately, often leads to a day or two of bad PH days afterward. Often this can be very discouraging.

I am one of those who usually overdoes it when I'm having a good day. I KNOW I should be taking it easier, and that I don't have to accomplish everything I need to do in one day, but I'm hard-headed and I just don't learn! So then I need to take at least a day to just do nothing because I went overboard the day before that. It's a vicious cycle that I just don't seem to break out of! lol
Some people with pulmonary hypertension may be able to continue working after being diagnosed. However, there are many who cannot keep up with the demands of the job they are in because it is too physically (and perhaps emotionally) draining.

There would have been no way I could continue working as a preschool teacher, yet I would have if my doctor had not told me to quit my job. When I look back at how I felt when I was working, I wonder how the heck I ever got through my days!! The sheer exhaustion I felt when coming home from work every day was terrible, and while I'm sad that I can't continue teaching in a classroom, I'm so thankful that I'm feeling so much better than I did back then because I'm no longer working.
"But you don't look sick," is a very common phrase so many PHers hear, and sometimes it is very irritating. This is when The Spoon Theory comes in handy. The story can be read here.
Exercise is an important part of maintaining health, but it can be very difficult for PHers to do. Many PHers are short of breath with minimal exertion. Each patient is different. There are some who attend pulmonary rehab, or have asked their doctor what type of exercise may be beneficial to them. Cardiovascular activities and ones focusing on muscle tone are important! PHers must not over-exert while exercising, and must give themselves enough recovery time to see if they can continue with more activity.

I have said so many times how much pulmonary rehab has really made a difference for me since I started it over 2 years ago. There are some days when I'm dragging trying to get through exercising, but there are some day when I really do feel great. It's an incredible feeling to be able to exercise when it's something I never did growing up. Not to mention, all the muscles I have, especially in my arms! Whoo hoo! LOL
Many people living with PH must watch their salt and sodium intake because of possible fluid retention. Fluid retention can make it hard for a PHer to breathe. The need for diuretics is very common for PHers to help them lose excess fluid. Watching salt intake, buying low salt or no salt foods, cooking fresh food and using lots of spices and herbs are some ways for a PHer to control salt consumption in their diet.

I think I am one of the lucky PHers who really don't have issues with salt and require the need for diuretics. This doesn't mean that I don't watch my sodium intake. I don't cook with salt 95% of the time, and I read labels and avoid products with alot of salt in them. And I like to cook fresh as much as I can. Let's face it, PHer or not, salt really isn't good for anyone out there!! And it really boggles my mind watching people, like my dad, pour salt all over their food. I actually find that much salt really disgusting!!
Being diagnosed with pulmonary hypertension can be an emotional rollercoaster for most PHers. They go through denial and anger quite often before they can finally wrap their head around what they are dealing with now. Learning to cope with limitations can be extremely frustrating, but eventually most PHers learn to live with a new "normal."
All the meds for pulmonary hypertension have side effects. Some sides don't stick around long. Some do. Side effects include one or more of the following, depending on which med/meds are taken: headaches, nausea, swelling in the lower extremities, liver damage, vision changes, nasal congestion, jaw pain, dizziness, nose bleeds, difficulty sleeping, heartburn, flushing, diarrhea, bone pain, rashes, infections, throat irritation.

When I started Tracleer, I got headaches, but I was nauseous for almost 2 weeks before that went away. When the dose was increased the next month, I went through the same side effects for a couple weeks, and since then, it hasn't bothered me.

When I started Revatio, the headaches were really bad for a couple weeks. Excedrin seemed to help, but they were almost constant before they started dissapating. And then I increased the dose, and they came back. The one side effect I get most often from the Revatio, usually after my last dose of the night, is stuffi…

Today is PH Blogging Day!

A few years ago, a phriend wanted to do something for PH awareness month, but being that she could not physically go out and about and spread the word, she came to me with an idea to blog about PH. I thought it was a wonderful idea! So in my post today, I decided to share how I've felt growing up with this disease, before being treated, and even after.

I have said before that I was born with pulmonary hypertension and congenital heart disease. Neither were discovered and diagnosed until I was 9 months old. The doctors couldn't repair the 2 holes in my heart because it was too late to do so, so they told my parents I might not live until 1, or I might live 50. In 15 more years, I WILL hit that 50 year mark, and I hope to do so while still in pretty good shape.

Obviously, I remember nothing as a baby with PH. I only know my mom told me that I was a pretty good baby. I didn't cry much, probably because crying made me way too tired. I didn't gain pounds, I gained ounces. Bre…

Puppies!

I had a dream last night, or early this morning, about black lab puppies that were being offered up for adoption. When I got up and thought about it this morning, I realized this was actually a Part II dream, because I remember dreaming about the puppies before. The first dream, they were too little for me to take home if I wanted them. By the time I had this dream, the puppies were much bigger. And for some reason, they were no longer black. Actually, they kept going back and forth from being black labs to golden labs, depending on the scene. But in the dream, I kept trying to figure out whether I wanted one or both of them. My family kept telling me I couldn't have either, because how could I possibly take care of them? And that thought also kept going through my mind. I'd never be able to bring it outside all the time, especially in winter, and I could never take it for a walk because I just don't have that kind of stamina. I remember someone ended up with one of the pu…
Tyvaso, or treprostinol, is another inhaled treatment meant to relieve PH symptoms. It works by opening up the blood vessels in the lungs, which helps to increase activity in the patient. The difference between Tyvaso and Ventavis is that Tyvaso inhalations are not as long, and does not need to be done as many times a day. This does, however, depend on a patient's needs.
Ventavis, or iloprost, was the first inhaled treatment for PH symptoms. It works by direct vasodilation of the blood vessels in the lungs. Using Ventavis has shown improvement in shortness of breath and an increase in activity. Ventavis treatments are done every 1.5-2 hours a day, from 6-9 times a day. The cost of Ventavis is around $60-70000 a year.
Adcirca, or tadalafil, or Cialis, treats symptoms of pulmonary hypertension much in the same way as Revatio. It works by dilating the blood vessels in the lungs, allowing more blood to flow and increase physical activity in the patient. The major difference between Revatio and Adcirca is dosage. Revatio is 3 times a day, Adcirca is just once. Important to note, with both of these meds, nitrates must never be taken! It can cause an unsafe drop in blood pressure.

I forgot to mention yesterday with my post on Revatio that I've been taking it since the summer of 2007. I have found that the combination of Tracleer and Revatio have improved my ability to do physical activities, such as pulmonary rehab. I'm so thankful that right now, these 2 meds have allowed me to be a bit more active than I was many years ago!
Revatio, or sildenafil, or Viagra, is another pill to treat PH symptoms. It works by relaxing and widening the blood vessels in the lungs to allow the heart to pump more blood through the lungs. It helps to reduce blood pressure in the lungs and allow more physical activity. It is taken 3 times a day. It costs around $10000 a year.
Letairis, or ambrisentan, is another oral med to treat symptoms of PH. It works much in the same way as Tracleer does, blocking endothelin to allow for reduced blood pressures in the blood vessels, and increased activity in the patient. Monthly blood tests are required to check for liver damage and pregnancy. It costs around $48,000 a year.
Tracleer, or bosentan, was the first oral med treatment approved for PH. It works by blocking the effects of endothelin, which causes blood vessels to narrow, and scarring and overgrowth of the muscle walls of the blood vessels of the lungs. Tracleer can reduce the blood pressure in the lungs and improve activity and wellbeing. It is taken twice a day. Liver tests must be done monthly since it can cause liver damage. Women must do pregnancy tests monthly since Tracleer can cause major birth defects. It costs around $50k a year.

I began taking Tracleer on Oct. 12, 2003. It changed my life. I didn't notice it working at first, but after a few months, subtle changes were appearing. I wasn't gasping for breath after walking long distances. It was truly life changing for me. I am so thankful for those people who came up with it as a treatment. I'm hoping those same people can also find a cure!
Remodulin, or treprostinil, works as a vasodilator to widen the narrowed blood vessels in the lungs, and inhibits platelets from clumping. Remodulin can be use by IV, subcutaneously (both use pumps), or by inhalation. Inhaled Remodulin is called Tyvaso. Remodulin can cost around the same amount as Flolan every year, depending on dosage needs of the patient.
Flolan, or epoprostenol, was the first FDA approved medicine to treat symptoms of PH. It is a continuous IV through a permanent catheter placed in one of the large veins of the heart. A pump is used to deliver the med into the system. Flolan works by dilating the blood vessels and helping the right side of the heart pump more blood through the lungs. The cost of Flolan is at least $100k per year, sometimes higher depending on patient dosing.

Perhaps The Coast Is Clear

Last Wednesday I was feeling more tired than usual, but last Thursday I felt as if I might be coming down with a cold. I went to rehab and ran errands, but then I went home. I spent this weekend in the house laying low, overdosing on Vitamin C and tea and soup, and just getting as much rest as I could. I do NOT want to get sick. I think I've avoided getting a cold, though. The only issue I keep having is a slight headache at the base of my neck. Nothing seems to help it, so I'm trying my best to ignore it. Seems to be working.

I did do some things around the house during the weekend, but what I was most happy with was working on jewelry. I made an illusion necklace set and a single illusion necklace on Friday night. Last night and today, I ended up making 12 bracelets and a few pairs of earrings. Friday night and tonight, I sold a few bracelets that I had in my Etsy store. Overall, a pretty good weekend jewelry-wise!

I plan on breaking out of the house tomorrow to get to the pos…
In 1975, when I was diagnosed with pulmonary hypertension, there weren't any treatments available. Twenty years later in 1995, the first FDA-approved treatment became available in the form of a continuous IV med called Flolan. It is still considered the gold standard of treatment for PH, especially for patients who are very ill. Today, there are now 8 FDA-approved treatments for the symptoms of PH. There is still no cure.
Although pulmonary hypertension is a lung disease which effects the heart, there are many pulmonologists (doctors who specialize in lung conditions) and cardiologists (doctors who specialize in heart conditions) who do not understand PH at all. Therefore, PH patients need to see a PH specialist, a pulmonologist or cardiologist whose main or only focus in their practice is treating PH patients.

A reader asked me what my first indication of having PH was, or did my doctors find it. Well, a doctor did realize something was going on with my heart when my mom brought me for my first set of shots at a free clinic when I was a baby. The doctor told my mom to talk to my pediatrician, but that doctor didn't think anything was wrong. So, when my mom brought me for my second set of shots at the same free clinic, the same doctor told her there was something very wrong, and that I looked cyanotic (blue). My mom once again told my pediatrician, and I was scheduled to see a pediatric cardiologist…
Pulmonary hypertension may be suspected by an echo, but the ONLY test used to actually diagnose PH is a right heart catherization. Other tests performed to help determine whether PH is the only thing wrong, or if the person has underlying causes for PH are blood test, chest xray, pulmonary function tests (PFTs), 6 minute walk, nuclear scan, and electrocardiogram.

Another Year of Exercise

This morning I reluctantly got out of bed to get ready to go to rehab and then do some errands. I think I'm coming down with something, so I really debated for quite awhile whether to even go outside. But, I did, and I left a little bit early so that when I got to the hospital, I could see the Financial Advisor about getting help to pay for rehab for another year. Despite how I'm feeling, I'm glad that I went. She was readily available, she remembered me from last year, and she set it up and printed out a copy for myself. She told me next year when I start thinking about turkeys, to come see her again. lol I'm glad that is taken care of. I don't know what I'd do if I had to stop rehab because I can't afford it anymore on my own. I really do think it's helping me so much!
Major types of PH include: IPAH (Idiopathic Pulmonary Arterial Hypertension) - cause is unknown; FPAH (Familial PAH) - the cause is due to genes; APAH (Associated PAH) - the cause is due to another disease or chronic condition, including connective tissue disease, congenital heart disease, chronic liver disease, HIV, drugs, toxins, and more.
You cannot get pulmonary hypertension from smoking. You cannot get it from being overweight. You cannot get it from being lazy and not exercising. Any doctor who tells you this is full of crap and doesn't know a thing about this disease.
Pulmonary hypertension is not regular high blood pressure. It is high blood pressure in the arteries of the lungs that can lead to heart failure.

To Make Aware

November marks PH Awareness month! If I asked 5 people if they knew what pulmonary hypertension was, I would actually be shocked if ONE person knew. This disease really needs more awareness! If you or someone you know are experiencing shortness of breath from doing the smallest task or just walking down a hall, are having fainting spells or dizziness that cannot be explained, or are extremely fatigued all the time, please get to a doctor! Pulmonary hypertension may not be the cause, but it's better to be safe than sorry in getting it checked out as soon as possible!

Another Phriend Lost

Becky was a 21yr old woman who had been waiting on the transplant list for almost a year and a half. She needed a new heart as well as lungs. She had pulmonary hypertension and congenital heart disease, and was diagnosed when she was 6 years old. She was a special case, as her heart was located on the right side of her chest instead of the left, and it was backwards. It made a complicated case for the doctors, but they listed her because they thought they would be able to do the transplant whenever that time came.

Becky finally got her call last night. I saw it on her sister's Facebook page, and I actually cried. I'd been praying for her for so long, and I was so happy she was finally getting her 2nd chance. Of course, I was hoping this wouldn't be a dry run for her. But when I got up this morning, I received an email from Becky's mom saying that the surgery had started at 6:15am my time. I prayed all day that the surgery would be successful and that Becky would do well…

Out And About

Today I had such a busy day. I went to rehab, and after I was done, I went home briefly to change and get some lunch. I got all my things ready to spend some time out in Amherst, which is about 20 minutes or so away. It all depends on how fast I can drive up the boulevard to get there. I met a phriend for coffee at Barnes & Noble for a little while, and that time just went too fast! I had to leave in time to make it to an appt with the dermatologist I see. During the appt, I told him that I don't get the breakouts like I used to, so the antibiotic I've been on seems to be helping. However, I'm still dealing with such oily skin that it's driving me insane. He wants to put me on a topical gel, but my insurance just won't cover it. So, he gave me a whole bunch of samples. I thought that was rather nice of him! I'm hoping they'll help some!

After my appt, I went to Michael's to look at the bead section. Yes, beads again! lol I was good and after having a…

Concerned

A person very dear to me has had diabetes for decades, and I worry about this person when I know they aren't eating right or doing the things they should to keep themselves healthy. Last week this person found out that glucose was in a place where it shouldn't be, and I just tonight found out that when that happens a lot, the kidneys can begin to fail. I had no idea. It causes even more worry.

This person told me that one of the biggest ways to keep glucose down, besides eating right, is exercise. I know this person isn't getting it. I completely understand how hard it is to just make the decision and start exercising every day, or at least several times a week. If I weren't going to pulmonary rehab, I wouldn't be working out because I just can't seem to stick to a routine at home. And so I do realize that it's hard to just start an exercising regimen, especially when you're on your own. I truly wish I could exercise with this person. Even just going for…

Breathing Hard & A Loss

This past week was a bit of a rough one for me breathing-wise. Not only the weather bugged me most of the week, but I also felt rather bloated for a few days, which caused me to be so short of breath that talking on the phone or to someone was a problem. Even just laying in bed was hard. It almost felt like the days of yore when I was growing up and not on meds to treat my pulmonary hypertension. It sucked, and it gets a bit depressing. I hate when I go through periods like this. It reels me back to wondering if the PH will actually worsen like that for real one day, and not for a brief interlude. I'm doing better now, thank goodness, but the days when I was really feeling crappy were very much downers. Sometimes it's just so very hard living with this disease.

I have met so many different people with PH both in the real world and the online world (funny how there are 2 separate worlds in my life now!). It's awesome when those 2 worlds collide together and you can actually …

Slow Cookin'

About a year or so ago, I got a crock pot for free from one of the survey sites I participate in. It was a rather large crock pot, but I enjoyed having it! I made lasagna, beef stew, macaroni and cheese, and a couple other things in there. Then in the spring or summer, I can't remember, Mandy's crock pot broke. She uses hers way more than I use mine, and since mine was family size, I asked her if she wanted it. She said sure, and she bought me a smaller crock pot. Since I got it, I've made a couple things I've never made before. I did beef stew again (because it's just so yummy!), but I've also made black bean soup. It turned out really good! Today I made boneless pork ribs for the first time ever. It turned out terrific! I had used a dry rub overnight on the pork first, and this morning I put the pork in the crock pot and covered it with a mixture of Jack Daniel's bbq sauce and apple cider. I had it on low for 8 hours. By the time I had dinner tonight, th…

What The HECK Is That Noise???

For the past several nights, I've been hearing this noise in the house, and I couldn't quite figure out what it was. It's sort of like a rumbling noise, almost as if someone was running a sewing machine. At first I thought it was my fridge, but I kept going over to it and listening, and the sound wasn't coming from it. Tonight I opened my apartment door into the hallway and listened. Not coming from the basement. I crept up some of the stairs leading up to D's apartment. Hmmm, the sound was coming from there! Ok, so I knew the source. But what the heck was it???? She wasn't home, so I went back down to ponder and wait for her arrival so I could ask! As soon as I heard her turn the key in the door, I went back into the hallway. I asked her if she had something running upstairs, and she started apologizing. She said she had gotten 2 hamsters from someone, and they were running on a wheel. Oooooooooooooooh. Soooooo not what I was expecting to hear. But, at least I…

Eyes Wide Shut

On Thursday night, I was talking to a good phriend, and I had been telling her how I've run into some rather cute guys in the past week. The point I was trying to make was that I'm starting to look around again, even though I'm still not too sure how I feel about maybe trying to join the dating scene again. Part of the reason is that I still miss Euan a lot. It doesn't hurt as much as it did in the beginning when he died. In fact, usually when I think about him nowadays, it's because I heard something or remembered something that reminded me of him. Usually it makes me smile a little, or sometimes it makes me tear up a bit, but I haven't cried over him in a long time. Yesterday afternoon was a little different, though. I was in the middle of making a necklace, and I thought of Euan, and I suddenly had an overwhelming sense of panic because I realized he wasn't around to tell him anything. It was as if I was just realizing now, seven months later, that he w…

33 Miracles

For 69 days, 33 Chilean miners were trapped in a mine. No one knew if any of them had survived until almost 3 weeks after the mine collapsed. First predictions thought the miners may not even be out of the there until Christmas. There were 3 teams working on 3 different plans of action to get the miners out of there. People from all over the world were helping out. A small city formed by the families of the trapped miners, and they refused to leave until every single miner was freed. A few days ago, one of the plans to get the men out was finalized. Last night, rescuers were sent down in a capsule called Phoenix, and the slow beginning to freeing the men was started. More predictions thought it might take up to 36 hours. Rescue operations ended in about 24 hours, much faster than had been predicted. Everything went so smoothly, it was almost unbelievable! Last night, I watched the beginning of the rescue efforts. I finally went to bed after the third man got to the top. It was so emot…

A Pill Anniversary

My life changed on October 12, 2003. That was the day I began a medicine to treat my pulmonary hypertension. I was 28 at that time. The only medicine I had been on since I was a small child was digoxin, for my heart. I continue to take that medicine, but now I am also on 2 meds to treat symptoms of PH. Tracleer was the very first one I started taking. It is a pill taken twice a day, 12 hours apart. It took a couple of months before I finally realized how much it was helping me, especially with shortness of breath. When I first realized I was not so tired going from the house to the garage, I cried. I couldn't believe it, I wasn't as short of breath as I had been growing up! Some people think it's nuts that I've remembered the day I started a pill. I don't. I remember that day because it drastically changed my life. I am so thankful for 7 years on this med, and I can only hope and pray for so many more years to come.

Goodbye London

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My upstairs neighbor kept a bird named London in the backyard. London was a racing pigeon. She originally came from London, Ontario. Her first and only race, she broke her wing. Somehow D. acquired her, and has been taking care of her for several years. London was kept in a large carrier, and D. would change the paper in the carrier, and the food and water, pretty much every day. Many times, London would wander around the yard, picking at things, but she'd usually end up back near her carrier. Several times this summer, I'd find London out back there by herself, and D. would be upstairs in her apartment for maybe 5-10 minutes before she came back down. I was a little concerned about that, because I was afraid that London might be taken by someone or would just run away (since she couldn't fly!). But, D. would come back down and London would be ok, and then put back into her little home.


Today, London was attacked and killed by a roaming cat while D. was upstairs. I was in m…

Pajama Day!

I got up after hearing my phone in the kitchen this morning. I thought it was Mandy, so I sprung out of bed in mid-dream. I felt rather dazed. I didn't rush to answer the phone, but I at least got myself out of bed. After getting my contacts in and stuff, I went to the phone and found out it was Rite Aid calling me about one of my meds again. I hate the stupid reminder phone call. I don't even know how I got signed up for it! There isn't any way online that I can see to cancel it, so I guess I'll ask at the pharmacy tomorrow. Irritating!

I got Mittens his breakfast, and I went to wash my face. I felt so nice and warm for once in my pjs, so I decided that today would be Pajama Day. It's not that I wasn't feeling sick or tired or anything, I honestly just didn't want to get dressed. lol Although I have places to go, I thought I'd just leave it for tomorrow. So, I had breakfast, and spent way too much time online before I finally decided to go work on a fe…

Eyes To The World

When I saw my eye doctor last month, he wanted me to see a retina specialist. The past couple of years he's been a little concerned with my eyes, especially the left one. I'm currently waiting for my sister to pick me up so I can go to my appointment. I'd lie if I said I wasn't nervous. I am hoping that it isn't as bad as my eye doc was thinking, and that'll they'll continue to keep an "eye" on it (haha). But, I really don't want anything like retina detachment to occur! That would be just horrible!

I used to wonder which I would miss more, my eyesight or my hearing. I always said that I would totally be heartbroken if I could no longer listen to music. But now that I'm facing a possible eye problem, I realize just how important it is to see. Of course, I should consider myself lucky that I can see and hear pretty good, because there are so many who can't. Anyway, I'm worrying myself again! I won't know anything for sure until I…

A Very Busy Saturday

I got to bed on Friday night and felt better about the meeting the next day, since I had pretty much gotten everything together. Saturday I woke up at 7am to take Revatio, and for whatever reason, the next 2 hours went by so slowly. I wanted to get another 2 hours of sleep, and I'm not sure I ever really did. So I finally got up at 9 and got myself ready to go. Joan picked me up at 11am so we could get the food first. Wow, they kept bringing out boxes of stuff! It all smelled sooooo delicious when we got back in the car. We headed to the hospital with no problems. Joan pulled up to the front of the hospital, and we both went in to get some wheelchairs, since it was the only way we could get the food in the room. A big shoutout goes to the security guard working on Saturday, because he had to unlock the room, and he brought one wheelchair up there for us! Yay, M!! Joan and I got the other 2 up into the room, and Joan started setting up the food while I set up my stuff. My doctor s…

Oxygen Confusion

I've been on oxygen for over 8 years now. Although, when I first started wearing it full time I was very sporadic with it when I'd go out in public (wear it to the restaurant/movie theater/someone's house, etc, then take it off before going in). Over the years, and especially the last couple, I just don't care anymore if I have it on. I know I need it, and I know it's helping.

So, since I wear my o2 so much now, my niece and nephew here in town have mostly seen me with it on. They tried to pull it off my face when they were babies. They've asked questions about it. I caught my nephew trying on my cannula one day (of course, I took it off to answer a phone call in another room when I was babysitting him...what did I think a curious 2yr old at the time would do??). I had a sniffing war with my niece when she was about 4 one day while I was over. She heard the puff sound from the bottle when I breathed in, so she was trying to copy it by sniffing in hard. So I wou…

Busy Weekend

I have been planning for my upcoming PH support group meeting for over a month now, but crunch time is here, since the meeting is tomorrow. Although things are almost set, I feel like I have nothing done. The food has been ordered, the guest speaker is squared away. He is my PH doctor from the Cleveland Clinic, and he will be talking about lung transplant. I have my PH bracelets all in a bag, since a few members asked me about them again. I have all the stuff for the Pucker Up 4 PH campaign, including the blue lipstick mixed with Vaseline so it'll go on lips better! I started a bag of extra stuff to bring in case of leftovers (which is ALWAYS the case). I have a list of things I need to mention during the meeting, I just need to print it out. I can't think of anything else I need to do, but I'm still stressed out about everything!! I hate that I get this way. I'm looking forward to the meeting, but it's going to go in a flash and be done before I know it. Then I…

Great Weekend, Crappy Monday

Today was a crappy day. I tried to seek positivity in the morning when I got up, but since I didn't feel good from the get-go, that effort went down the drain pretty quick. It was kind of hard to take considering I had a really good weekend. So, I'll just focus on that instead!

Saturday I set out to do some things around the house that I needed to get done. Once the music hit my ears, it seemed that everything was pretty easy to do. I washed some sheets, put them in the dryer and then eventually folded them and put them away. I washed the dishes, and cleaned out the microwave. I finally got rid of the tomato plant on the front porch (there were still 2 tomatoes growing, but they are in a brown bag...maybe they'll ripen and be ok to eat!), and the dead flowers in the big pot on the porch, too. Then I went around to the back and ripped out the tomato plants that never even produced anything. Next year, I will know not to start seeds from scratch, I guess. I took a little nap,…

Four Eyes

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I've been blind as a bat since the 3rd grade. Year after year, sometimes even a couple times a year, my eyes would get so bad that I'd need new lens. They got thicker and thicker the worse I got. I hate needing glasses, but there wasn't any way I could go without having them. The pair of glasses I had most were the huge green ones with lens thicker than the frames. They were horrible to say the least! Ten years ago was the last time I bought new frames. I was amazed at home much thinner the lenses were. I wore my glasses mostly at night, but I eventually became so dependent on contacts that I'd wear them from the time I got up to the time I went to bed, usually making that about 15 hours a day. Not exactly the best for my eyes! Since the glasses I had were so old, I could only wear them right before bed, if I decided I was going to read for a bit. So, I finally decided several months ago that I'd save up money to buy new frames. I really didn't like the ones I …

Sunny Monday

My birthday weekend was rather nice. I spent time Friday night with my family, going to a Chinese buffet for a yummy dinner, and then having cake at my sister's house. One of my fav parts of the night was helping my 5yr old niece pick out food to eat, or try. When she saw the bin of clams, she exclaimed very loudly, "Clams?? I LOVE clams!!" She was so giddy about it! A woman across the buffet from us laughed and told me how cute my niece was! She is pretty cute, I do agree!

Saturday I cleaned the bathroom, but tried not to exert myself too much so I could enjoy the evening with my friends. We had Game Night! We didn't seem to play too many games, though, but we did talk quite a bit. Adult Mad Libs was a hit, and hysterical, and I got 5 strikes in a row on Wii bowling! I could never do that in real life! My friends gave me beautiful gifts, and I loved them all. I must find places to put them now!

I spent Sunday just resting and playing Facebook games. I still have an ad…