Daily Ponderings

The moment I was born, I was a sick baby, even though doctors couldn't figure that out until I was 9 months old. I don't know what it's like to be totally healthy. I spent the first 28 years of my life knowing I had 2 holes in my heart, and pulmonary hypertension (PH), although no one really explained that second half to my parents or myself. Then when my daily symptoms of shortness of breath, and extreme fatigue turned into an elephant sitting on my chest constantly, I was eventually introduced to the PH world. I started seeing doctors at the Cleveland Clinic in Ohio who specialized in the disease, plus a cardiologist for adults living with a congenital heart defect. I was eventually started on a PH medication, and that first shipment of medication almost 16 years ago led me to the online world of a PH community. From message boards to chat rooms, I suddenly realized that I WAS NOT ALONE!! The PH world became MY world for so long. I would read messages for hours, replying ...

Exercise. It was something I was pretty much told to stay away from when I was growing up. Doctors  initially couldn't give my parents a direct answer about me taking gym class, so they finally decided that I would do better without it. So, my entire school career, I never took a gym class, and I never participated in sports. Even though I ran around with my sistores and neighborhood friends playing Hide N Seek and Capture The Flag, it would exhaust me, and I'd have to rest for an awfully long time. So, no exercise regimen or sports for me! Then, when my PH symptoms got worse, and I eventually was referred to Cleveland Clinic, I was told I'd have to do a 6 minute walk. I had no idea what that really entailed, but I tried to start walking on my sistore's treadmill to "practice," and holy moly, did I feel terrible!! But, I kept trying as much as I could to walk so that maybe I could "pass" this 6 minute walk thing. Unfortunately, when it got t...

The other day I was in Hobby Lobby for some clear Elmer's glue for a project I'm doing next week with the seniors at the nursing home. Since the glue was almost near the back of the store, I took my time wandering up to the front to cash out, and stopped at a display of signs. The one below really spoke to me, and so I decided that I had to have it: Ever since I had to quit working at the ripe old age of 24, I have spent the almost last 20 years occasionally wondering what my purpose was supposed to be if I couldn't work. Sometimes I had such terrible guilt about not going to a job every day, and sometimes I felt judged by it. But, there has never been anyone in my life who has outright made comments to me about not working. And, to be honest, the only person really judging me is.....me. It hasn't been until the last several months that I have actually been OKAY with not working. Why did it take so long?? I guess maybe because I found some answers along the way...

It's been, once again, forever since I last wrote in this blog. I have always done that with any diary/journal/blog I've had since I was little and had my Cabbage Patch Diary (which is still in my drawer!). Sometimes, I am just not inspired to write. Sometimes, I feel like my writing is boring. I think I need to change that. I was thinking of finding some sort of article or challenge of writing almost every day on different topics. I'll have to do some research. But, tonight, I at least wanted to brush off the proverbial cobwebs of my site, to get some words out there in the internet. And, I wanted to also put it in "writing." I've been happy lately, and that speaks volumes to me.

Another summer-like day in October happened today, and that was alright with me! I am loving this weather, although I am very aware that it will end soon enough. I haven't yet switched over my wardrobe, and plastic hasn't been sealed up over the windows. I'm still hoping I can hold off on that for another couple weeks. We'll see! Today, I had a PH support group meeting. I've sort of lost count of how long I've run this support group, but I know it's well over 10 years. I enjoy having meetings, because I get to see my phriends! But, I REALLY enjoy the meetings where I have a speaker, which I've had for almost all the meetings this year. It's very hard to come up with new topics after having a support group for so long, especially when not too many new people show up, or come once and then never again. I have repeated a few topics, but there are still a few that I haven't had at all. So, I need to prepare for next year's meetings soon so I ca...

Wasn't it just September 1st?? The month that brings the last few weeks of the dog days of Summer, and then ushers us into the crispness of Fall?? I swear, this year September just flew by with a blink of an eye, and today it's October!! I'm always sad when Fall starts, even though it seems everyone around me is giddy with excitement. Fall means colder days are ahead, and I'll be pretty much spending my days from now until late spring in long underwear since my circulation is not that great!! lol I'm trying to have a better attitude about the long Winter days coming ahead, especially since I don't think we'll be as lucky as the past couple years with "warmer" days that allowed me to get out a lot more than usual during the cold season. I keep hearing and reading rumors that we'll get a bitter winter with more snow, but of course, that remains to be seen. Getting out a lot the last couple winters helped me some with anxiety that didn...

This past weekend flew by so quickly! It's hard to believe it's already Monday again. So, I'll sum up the weekend (which means, I will elaborate on everything lol). Friday was spent with my Dad at the Cleveland Clinic for my annual check up. We left a little after 6am since my first appointment was at 10 and it takes about 3 hours to get there. But, I'd been up since 4:45 for whatever reason, so I was rather tired! When we got to the Clinic, I had my first appointment, which was an echo. The technician who did mine was so thrilled because he never gets congenital heart defects, and he said I was the most exciting case he was going to have all day (granted, it was 10am, I sure hope I wasn't the only interesting case lol). After that was over, I got some blood work done, and then my Dad and I had time to eat some late breakfast/early brunch before my next appointment. The Clinic has different cafes in many of their buildings for people to get something, and the one ...

Actually, yes, it is still technically Summer even though it's September! I think people get to this month and automatically thing that it's Fall because most kids go back to school, the weather starts getting cooler, and the leaves start changing. Pumpkin-everything becomes available, and people long for Halloween. Oh my, just stop!! I am never ready for this change!! Today's weather, and the weather for the rest of the week, makes it sure feel like it's still Summer! Where was this weather for most of the ACTUAL Summer?? I spent a lot of time on my front porch this morning and afternoon because it was warm and beautiful out! It made me happy! Sadly, I got rid of my two pots of flowers since they were pretty much done growing. But I still have my chair on my porch in the hopes that I can still use it for a little bit longer before I have to store it. I had originally planned to do a lot more than I did today, but I am trying to live by a thought of "Because Yo...

I AM trying to blog more. At least, I keep telling myself that, and then I don't end up writing something because by the end of the day, I'm too tired or I forgot what I wanted to say. I need to just jot things down. lol It's already the second weekend of September, and it's almost over. I have a love-hate relationship with the month, because it means summer is on it's way out and I have to wait FOREVER for it to come back (the HATE part), but it also means it's my birthday month (the LOVE part)! And then that is over, and before you know it, Christmas is here (HATE/LOVE at the same time lol)! I don't know what I'd like to do for my birthday this year. I just saw on my Facebook memories that two years ago, I went to a Paint Nite with a bunch of my friends and two of my sistores. That was a lot of fun! Last year, I had dinner with my family, which was nice. This coming weekend, which is my birthday weekend, is kind of busy. Friday I have to go to Clev...

In the last week or so, I began seeing Facebook posts from local friends of a field of sunflowers in an area about 20 minutes east of me. I have seen a field of sunflowers once before, several years ago while on a trip with my mom to her hometown of Horseheads, NY. Right before we arrived there, I spotted sunflowers galore from the highway, and it was just so awesome! So, when I started seeing the pictures of friends enjoying the beautiful flowers, I knew I wanted to go for a drive! I did so on Friday afternoon. It was bright and sunny, although a little cool for my liking, and the drive was pretty easy. I knew I had arrived at the location of the field when I saw tons of cars lined up on the side of the road, where usually people aren't allowed to park. And then I saw the sunflowers. I was already in awe before I pulled over, and very excited!! My mom didn't want to come out with me, so I got out of the car and carefully crossed the road to the sunflowers. I could tell the poo...

This afternoon I had to get some blood work done for two different doctors. One script was for my regular testing to make sure my liver still likes the PH medication I've been on for almost 14 years, and to make sure I'm not pregnant (don't really need to do it, I know I'm not lol), and the other script was to check hormones, thyroid and a few other things for a problem I've been having. I went after volunteering, and the place was nice and quiet, so I was out of there shortly after. Before I left the building, I decided to use the ladies' room. While I was washing my hands, I looked in the mirror and noticed all the gray hairs that were coming out of the top of my head. My normal reaction to seeing them is "Ugh, I really need to get my hair done!" But today, my instant reaction to seeing them was: "I should be thankful I have gray hairs, because it means that God's allowed me to age." It took me aback that THAT thought popped into my h...

I am constantly struggling every day with what I'm DOING every day. And if what I'm doing is worthwhile. I think because I don't have a job, I feel like I'm wasting my time. And yet, my heart knows this isn't true. But my mind is having huge conflicts with this, and I just don't know how to get over it. It's the biggest cause of my anxiety, and some days it's just terrible. I keep telling myself the only person judging me on how I live my life is ME. ME alone!! And there is no reason for that! I am proud of myself for the things that I have found to do to fill many of my days....like exercising, yoga, meditation, volunteering, painting, etc....and yet, I feel like they mean nothing. I tell myself over and over again that my life isn't like anyone else's, and my life is the way it is for a reason. I just wish I could learn not to be so hard on myself. This issue would bother me once in awhile, but it's been awful since breaking up with the ex....

Last year, before the PHA International Conference, I found out that the PHA was looking for people to help them with videos they wanted to make about people living with PH secondary to another illness or condition. This included people living with Scleroderma, Lupus, HIV/AIDS, and Congenital heart disease. Oh! Congenital heart disease! Well, that was me! So as much as I was very afraid to be in front of a camera, because I'd never been filmed before, I told them I could volunteer if they needed me. And guess what? They needed me! So on the Saturday of the conference, I went to an assigned room to film. I was interviewed, answered lots of questions, and felt like I was there for an hour. lol I was wondering when the videos would be made, and found out a couple weeks ago that they were all done! Here I am, along with another congenital heart patient, and MY cardiologist from the Cleveland Clinic! I really respect him and all the research he likes to do about people living with m...

Have you ever flown in an airplane? Have you ever gone to Florida? Have you ever been to a huge conference filled with people who were dealing with an illness just like you? Have you ever been to Disney World? Have you ever been on a jet ski? Have you ever been to Ellicottville , NY? Or been to Chestnut Ridge Park ? Or Letchworth Park ?? Or even Griffis Park ?? Have you ever seen a buck? Have you ever seen 3 buck in one day?? Have you ever been in a hot tub where the sign says bathing suits optional??   Have you ever started challenging yourself because someone else was getting you to realize you COULD try to do things you've never done before?? Well.....I HAVE!!  This is pretty much the short version of my year in review of 2012. It's been an amazing year for me. Not only has my health continued to be pretty much in control for at least the 4th year in a...

Today is the last day for Pulmonary Hypertension Awareness Month. I'd like to think I helped spread some awareness through my blog, my Facebook statuses (which were the same as  my blog, mostly lol), and this year, through my PH display at 2 hospitals! I'm very happy I was given permission to do the display, and I am hoping I can do it all over again next November! Until then, I will continue to try making people aware of this crappy disease, because: -Anyone can have PH -Age and gender make no difference -The symptoms mimic other illnesses, so a person can be misdiagnosed for years -If not treated as soon as possible, it can lead to right heart failure

I get asked often when I'm seen by someone wearing the oxygen if I used to smoke. No. Never. Dated a smoker a long time ago, and it almost felt like I was smoking, but no. I've never touched a cigarette. PH is NOT caused by smoking. There is my simple PH fact of the day!

I wrote this a few weeks ago to include on my PH display board since I had some space and needed something to fill it!! Since I'm winding down on PH Awareness month, I thought I'd share this info again! Pulmonary hypertension Is NOT High blood pressure ***** Pulmonary hypertension Is NOT Asthma ***** Pulmonary hypertension Is NOT COPD ***** Pulmonary hypertension Is NOT Obesity ***** Pulmonary hypertension Is NOT Sleep apnea ***** Pulmonary hypertension IS High blood pressure in the lungs ***** Pulmonary hypertension IS Life-threatening if not treated ***** Pulmonary hypertension IS Diagnosed by right heart cath ***** Pulmonary hypertension IS Treatable ***** Pulmonary hypertension IS Life changing

The combination of my PH and congenital heart disease is known as Eisenmenger's syndrome. A phriend's mother posted all about Eisenmenger's today on Facebook, because her daughter also has Eisenmenger's syndrome. Since Jane let me, I'm just copying and pasting her post here! Eisenmenger's is also considered a rare disease by NORD. I couldn't find out approximately how many people have the disorder though but it has to be under 200,000.  Eisenmenger syndrome progresses over time as a result of a complication of a heart defect and the effects of high bl ood pressure in the lungs. This hole in your heart causes blood to flow or circulate abnormally in your heart. Oxygen-carrying blood (red blood) from the left ventricle mixes with oxygen-poor blood (blue blood) from the right ventricle. This mixed blood then returns to your lungs instead of going to the rest of your body, causing high blood pressure in your lungs. High blood pressure in your lungs (pulmonar...

Quite a few years ago, I heard about the Spoon Theory , a story written by a woman, Christine Miserandino, who is living with Lupus. She was trying to explain to a friend how she deals with her energy every day, and the friend didn't get it. So she explained it by using spoons.  The Spoon Theory is a story that can fit almost anyone living with a chronic disease, not just Lupus. It completely fits the life of someone dealing with pulmonary hypertension. There are some days when I might have a ton of spoons, and I can do a bunch of things and feel pretty decent. There are even days when I miraculously end up with some extra spoons by the end of the day! And then there are those days when I might drop all  my spoons on the floor the minute I get out of bed in the morning. I have often used this story to explain to my family and friends how it feels to live with PH. They seem to understand when I tell them I don't have enough spoons to deal with something. It sucks, bu...

The first ever reported case of Pulmonary Hypertension was recorded 121 years ago. 37 years ago, still not much was known about the disease. Today, we have 9 FDA-approved medications to help improve symptoms experienced by the disease. There is still no cure. YET.