Saturday, October 30, 2010

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. However, tonight I heard from a phriend who talked to Becky's mom that Becky wasn't doing well, that the heart wasn't responding well, and that they had to take Becky back into surgery to stop some severe bleeding. A couple hours after that, I found out that Becky had died at 10:02 my time (EST). I am very saddened to know that she never got her chance to heal from the surgery and experience life more. She was so young, and she had been sick for so very long. It's heartbreaking that I've lost, well, that the PH community has lost, another phriend. It's also maddening. We need a cure. Not tomorrow, TODAY. Too many are dying because there needs to be a cure. I pray for one every single day.

In the meantime, I'm praying for Becky's family, who have got to be shellshocked and devastated. Not only was Becky's life put on hold, but theirs as well. They all wanted so badly for Becky to be better. Her mom, especially, did every single thing she could to care for Becky. So I pray for strength for them, because they are going to need it. They are going to take a very long time to heal, I'm sure of that.

Tuesday, October 26, 2010

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 handful of beads, I put several of them back and only bought three strands. I also found some letter charms to add to 2 of my bracelets, so I was happy about that! I started wandering the rest of the store when my friend texted me that they were leaving for the Olive Garden, where I was going to meet them for dinner. So, I paid for my beads and charms, and headed to the restaurant which was less than 5 minutes away!

My friends and I sat down to eat when we all arrived, and not even 5 minutes after that, it started to downpour! We knew the bad weather was coming, but we just weren't sure when. We made sure that we took our time eating so we wouldn't have to head back out there too soon! By the time we enjoyed our meal, and dessert, the rain wasn't that intense. I was glad for that, but I still really hate driving on rainy nights. My eyes don't like it too much, and I feel sometimes as if I can't see very well. I took my time driving back home, and by the time I got back, I felt rather tense! So I took a nice bath, and then played online for the rest of the evening. Now it's off to bed, but before I go, I have to say that if I hadn't known any better, I could've sworn I saw Euan tonight as we were leaving the restaurant. A guy sitting at a table next to us looked so much like Euan that I froze for a split second and had to keep from saying his name. I kept moving on, but it made me miss Euan all over again. I still wish so much he was still here.

Sunday, October 24, 2010


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 walks gets me a bit too tired, so that kinda defeats the purpose. This person's heart is in good shape right now, so the cardiologist has no reason to write a script for cardio rehab. That's too bad, since it might be nice if this person could join me at rehab! I just wish there was something I could do to get this person motivated and realizing how important it is to start doing something, SOMETHING, to improve their health through exercise. I just want them to feel better, and I know this is one step which is rather necessary.

Saturday, October 23, 2010

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 talk in person to someone you got to know online who is going through much of what you're dealing with, too. Well, anyway, years ago a Mexican woman named Mariana came onto the boards. She posted with many questions, and we became phriends, chatting online or emailing often. She was such a sweet person! Many of my phriends were able to meet her at the PH Conference in Miami, FL. Her smile was so infectious! Eventually she told many of us she wanted to take a more holistic approach to her PH, and we all seemed to lose touch with her. At the beginning of this month, she posted on the PH board, and so many of us were happy to hear from her! This past Monday, she came into the chat room, and talked with us for a long time. She seemed in good spirits. She told us of a scratch she'd had for awhile that seemed to be leaking fluid, and we urged her to seek medical attention for that asap. She agreed and said she would do that the next day. Chat was winding down, and said her goodbyes and we told her to come back to chat any time. On Friday morning, I found out that she died. It was so shocking, and really upsetting. No one knows yet exactly what happened, and I am hoping to find out, but not sure if we'll really get an answer. I don't know if her PH was really bad, or if that scratch was really infected and got terribly worse? It's just so heartbreaking to know that in the beginning of the week she was with us chatting and laughing, and by the end of the week, she is gone. It's situations like this that make us really truly hate PH and declare it so unfair to anyone who has it. My thoughts and prayers are with her family, but this also makes me pray even harder for a cure!

Tuesday, October 19, 2010

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, the pork fell apart as soon as I touched it with a fork! It was da bomb!! I'm excited about having pulled pork sandwiches later this week!! I have a couple more recipes I'd like to try in the crock pot, including a beef and barley soup, and chicken stew. I'm so glad to have the crock pot, because it's easy to use, and I don't have to worry about cooking in the evening for dinner. Plus, I have a lot of leftovers! It's great to stock up the freezer, especially during the winter! And one final note about crock pot cooking: one of the best things about having one? Your house smells soooooo good all day while whatever is in there is cooking! One of the drawbacks? Your house smells soooooooo good all day while whatever is in there is cooking! Makes you feel like eating all day long because your tummy is loving the smells! LOL

Monday, October 18, 2010

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 finally got the answer to what was driving me insane for several nights!!

Sunday, October 17, 2010

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 was gone. I almost couldn't breathe. I have only felt like that a couple times, and the other time was a couple months after Mason had died. I can tell you that it's not a very comforting feeling. I eventually calmed down, but it was quite unbelievable knowing that my mind was having a hard time grasping the concept of loss for a few minutes.

Another reason I'm not sure if I'm ready to go out into the shark tank is because, well, I'm afraid. I don't really think I've had that much luck finding guys who actually want to deal with someone living with an illness. Many moons ago when I used to talk to men online (something I haven't done in ages), everything would seem fine and dandy until I'd tell them about my health. Some of them would be curious, some wouldn't even stick around. I've had dates that were just one time deals, and then I'd never hear from them again. I mean, I know that happens to all of us. As much as I'm secure about going out in public with oxygen and not caring anymore what people think, I totally don't feel that way about dating. I guess I just don't want to go through 100 frogs to find someone decent again. It gets a little depressing knowing someone doesn't want to date you because you have a tube up your nose, or you get tired from just doing a household chore (because gosh, if you can't change the bedding b/c it gets you so darn tired, how do you deal with sex?? No, seriously, I've been asked that). When it happens over and over and over, well it's no wonder that I've stayed single all this time. So, I guess what I'll just do for now is keep my eyes open. I know there are opportunities out there, I just have to be willing and able to find them (when I'm ready).

Wednesday, October 13, 2010

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 emotional watching every single rescue, seeing the faces of their loved ones as they got out of the capsule and onto the ground. By the time I got up this morning, 13 men had been rescued. I ended up having live streaming video on my laptop all day, doing things in between rescues. I just didn't want to miss all the emotion, and the fact that this was definitely an historic event, not only for Chile, but for the world! I am so happy that all the rescues were successful, the 6 rescuers who went down into the mine are now all back up onto solid ground, and that no one is injured or has major illnesses. This has truly been a miraculous event, and it was a huge piece of good news that the world has needed for awhile now!

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.

Sunday, October 10, 2010

Goodbye London

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 my kitchen making dinner when I heard the dogs next door barking. I also heard D. start sobbing hysterically. I thought maybe she was upset about a puppy they had to put down at work today (she works in a vet clinic), but 2 minutes later, she came back into the house and called my name. I opened my door and there she was standing with London wrapped in newspaper, blood everywhere. She told me a cat had killed London, and that it was all her fault because she had left her outside by herself. I felt just horrible. D. went back outside, and a bit later I went out there to ask if there was anything I could do, but she said no. I told her I would miss saying hello to London when I'd go into the garage. I did a little attached to her, too. It's hard losing a pet, but even harder when it's a tragic ending. My only hope was that London didn't suffer from the attack. Poor little bird.

(By the way, I saw that black and white cat who killed London later on, wandering around my front yard. D. had seen the cat right before she found London. I wanted to go outside and scare it away, but it took off. Honestly, I feel sad that the cat doesn't have a home and has to wander the neighborhood. I hope that it doesn't meet a tragic demise, either.)

Thursday, October 07, 2010

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 few jewelry-related things. I had to resize a couple PH bracelets for 2 ladies who were at the meeting on Saturday. I also remade a Medic Alert bracelet for myself. And then I set up a triple illusion necklace set with these gorgeous fall colored beads. They are black-dark brown-red-orangey round beads, and I just think they are so nice! Hopefully I will have some time to work on it fully soon!

Right before Mittens and I got in a nap, I found out of from a phriend that a phriend of ours had received her call for lungs! SW was headed to the hospital, in Texas, and I prayed for 20 minutes that this call would be for real. Anyone on a transplant list can be called and then find out later that it was a false alarm. SW already had one of those calls over a month or so ago, so I was really hoping it wasn't going to happen again. As far as I know right now, about 8 hours later, the surgery is a go! I hope to hear in the morning how the surgery is going. It can take a long time to get through that surgery. I'm praying that everything goes off without a hitch!

I got up from my nap to make dinner, and then I watched tv and hosted PHA chat for the evening. I also chatted with a couple friends online. I don't know what I'd do without the internet. I truly think I would be lost and very much feeling as if I was alone. I'm so thankful it is out there, even if it makes me procrastinate on things I should be doing. lol I'm just glad I've been able to connect with so many people, especially those also living and dealing with PH.

On that note, it's time to get to bed! I have pulmonary rehab in the morning, and then I'd like to go shopping to get things I need for the month, and to just browse. The weather is supposed to be pretty nice for once, and not so dreary. Much better for me than having to be out in chilly weather!

Tuesday, October 05, 2010

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 see (haha) this new doctor!!

*UPDATE* I can't see at all because my pupils are so dilated and my eyes are so dry, but the eye specialist said she saw nothing wrong with my retinas. Yay!! She thinks maybe because I am so near-sighted, that my doctor was seeing something that wasn't really there. I don't know, I'm just glad I don't have any issues right now! I must go lay down and hope to heck my vision improves once I get up. Don't ask me how I'm typing. It's all a big blur. lol If there are errors, I'm sorry. lol

Sunday, October 03, 2010

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 showed up, and I introduced him to Joan. He began a mission of finding some cable thing that he needed in order to use the projector in the room with his netbook that had slides he wanted to use. Luckily he found one at the nurses' station! Slowly other PHers and their family/friends started coming in, and I did get to greet all of them. I eventually started the meeting by announcing who sponsored the lunch, and we enjoyed the food! About half an hour later, I introduced Dr. G, and he began his talk about lung transplantation, and everything that goes with it. It was a very informative talk, he surely knows his stuff!! People did ask him questions, he asked us questions, and I thought it all went very well. When he was done and no more questions were asked, I started doing the Blue Lips campaign. Another PHer asked if she could help, and suddenly the entire task was taken over, and I was being asked by a few other people about my jewelry. Before I knew it, most of the people were gone and Joan was just waiting for me to finish packing up my things since she had already taken care of the leftover food. The end of the meeting was just so chaotic!! I didn't even get to say goodbye to some people, and I felt bad! But other than that, I really thought it went well, and despite all my nervousness, I'm looking forward to the meeting in May!

Joan and I got the food back downstairs in the wheelchairs (Joan had to make an extra trip for the third one), packed her car up, and took off for home and much needed naps! Eve called me before I even got in the door, so I talked with her while I was putting away my stuff. I tried taking a nap with Mittens, but I started getting a bad headache. I ended up just laying down and just taking it easy. I called Dee and talked to her for awhile, which was nice! Then I had to get up and get ready to go to Mandy's house for leftovers with the family, including my Grandma, aunt and cousin who had his son. My dad picked me up, and we got over there. It was a very nice evening! I even got my family to do the Blue Lips campaign, although the guys refused to let anyone see their lips blue, so they took the lipstick, the paper they had to kiss, and kleenex to wipe their lips off into the bathroom so none of us could see. lol Hey, whatever, at least they did it!! I left with my dad around 9:30, and just took it easy until it was bedtime. It was definitely a very long day, but it went so much better than I was thinking. Sometimes I wish I could just turn off my brain so I won't overthink things and stress myself out!!

On top of everything going on yesterday, it was Mittens 10th birthday! I can't believe he's 10 years old! It makes me feel old! lol He enjoyed his day by napping, sleeping, napping with Mommy, eating, playing in a box, napping some more, and ended up playing for the last hour before I went to bed with various toys. We even played hide and seek right before I went to bed, at 1 in the morning!! So, I guess I would have to say that he enjoyed his special day!

Friday, October 01, 2010

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 would do it again, and we went back and forth for 5 minutes, both of us laughing our heads off as we tried to over-sniff each other. I have told them that I need to wear the oxygen to help me breathe better. They sorta get it. But yesterday was cute when I watched my nephew for about 20 minutes while Mandy went to pick up H. from school. As he sat there eating a muffin, he pointed to my cannula and told me he wanted one of them to breathe. I said he didn't need one, and he said that he did, because he couldn't breathe good. He was so serious about it, too. So, I just told him that the only way he could get one was to go see his doctor and ask. Well, that made him change his mind. He just looked at me and said, naaaaaa, and continued to eat his muffin. I just thought it was too cute and funny! lol

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'll go through it all again for the next meeting in the spring!

Besides the meeting, I found out that I have some family coming into town for the weekend. While it'll be nice to see them, it is so not my main focus until I get home Saturday afternoon from the meeting. I'll probably see them tonight, maybe for dinner, but I'm just trying to take it easy so I have enough rest for tomorrow!