Wednesday, May 26, 2010

Hotttttttt

It's currently 85 degrees right now, and the temperature was predicted to be around 88 today. I find this wonderful news, while I know many others do not. The huge plus to this? The humidity is very low, so I don't feel like I'm trying to breathe in a sauna! I have every single window open in my apartment, including the 2 windows in the jewelry room that haven't been opened more than twice in the 11 years I've lived here. New scenery for Mittens! There is a breeze coming in, winding through the entire place, and I feel quite comfy.

Euan would be picking on me about my love for the heat if he were still around. He didn't like it that well. I would pick on him for how much he loved the a/c, which I don't like much at all. I wonder how we would've lived together had he made it through his surgery and recovered well. We used to wonder that together, and just laugh. I'm sure we would've figured something out!

Thursday, May 20, 2010

Toronto, Here I Come

I went out to dinner this evening with Dee and her parents, down to The Silo in Lewiston. The weather was actually really nice today, and it was a beautiful night near the river. I enjoyed the company I was with, and when I got back into Dee's car so she could bring me home, I saw that I had a text. It was from Joanie. She said that she and Rick decided they would be able to bring me to Toronto for Euan's movie memorial event. I just stared at the message and smiled because I was so happy, since I wasn't really sure they could! I am beyond thankful, because this means so much to me. I'm trying to explore the area of the theater on Google Maps to see what's around so that Joanie and Rick can do something entertaining while I'm seeing the movie. Toronto is a big city, so there should be something that they can see or do! I'm not sure if either of them read my blog, but if they do, it really means so much to me that you are doing this. Thank you, thank you, thank you!

Monday, May 17, 2010

Butterflies

About a month ago, as I was trying to get the right key for my side door so I could go into the house, a white butterfly (more likely a moth, but it was still pretty, anyway) landed on one of the pillars that hold up the roof above the side door entrance. I had been thinking about Euan at that time, and that butterfly/moth made me think of him. I took a picture of it, but it still stayed in place for a few more minutes before finally taking off.

Saturday afternoon, I walked over to my computer room window, and noticed a butterfly (a real one, not a mothy one!) flying around. It kept trying to land on the window where I was standing, but finally ended up on the side of the rooftop where I could still see it. It just sat there for the longest time. I went to get my camera, thinking it would be gone by the time I came back to the window, but it wasn't. I got some great shots of it before it finally decided to go on it's way. It brought a smile to my face, since once again I had been thinking of Euan.

On Sunday, I had cut up a huge bowl of fruit, and decided to have some of it on my front porch. As I was sitting there in the sunshine, with the breeze blowing my hair, I thought to myself, "If I see another butterfly at any point, I'm going to take it as a sign that Euan is sending them to me to let me know he's near." Not even 5 minutes after that, I saw a butterfly drop down on a leaf right near the railing to my left. I was completely shocked, and a little shaky. I peered over the railing and saw it sitting there, flitting it's wings open and closed very slowly. I was too stunned to even try getting my camera. I also had tears going down my cheeks. That butterfly stayed for the longest time before it flew away. I knew I had my answer.

As I walked down the street to my parents' house later on for dinner, another butterfly followed me a little bit, making me smile even more. And later, after I ate, I stood on the porch watching Shelby roam around the front yard when I saw yet another butterfly land on some lilacs to the left of the porch. I had my camera, and was able to get some pics of that one before it took off. My mom couldn't see what I was taking pictures of at first, so I told her that I thought Euan was sending me butterflies. Whether she thought I was crazy or not wasn't something I really cared about. I knew in my heart that I wasn't.

Today I had to drive about 40 minutes or so to see the dermatologist. On part of the drive there, I kept seeing flitty little things go near my windshield, but so fast that I couldn't tell whether it was a butterfly or not. However, on my way home, one definitely crossed my path. It almost seemed to fly in slow motion past my windshield. Another smile and a moment of verclemptness (please, talk amongst yourselves) came over me. I am so thankful to know that Euan is so close, and is finally showing me that he is. I still miss him terribly, but I know that he is doing just fine.

Thursday, May 13, 2010

Yay! And An Oops!

Yesterday, I didn't feel like doing too much. It's not like I didn't have anything to do. I think the weather had a lot to do with it, though. It's been rather chilly and fall-like in temperatures, enough to have the heat on at night again. Maybe if I hadn't torn down the plastic already, it would still be warm?? I swear, April was warmer than May has been so far! Makes me wonder if summer is ever coming. I'm tired of wearing layers already!!

What I did end up getting accomplished is ordering swarovski crystals and pearls for a phriend's wedding jewelry set. She asked me about a month and a half ago if I'd be willing to make her something, and I was so excited and honored that she thought of me. I just love doing special orders for people, and I try my best to really make something they will really love for a long time! I hope I can do her proud!

I also went with my dad to the DMV after he got out of work. I gathered much of my paperwork that I thought I'd need to prove who I am, and that I'm not a fake, the night before. And yet, stupidly I guess, I was still somewhat nervous about getting it done. I don't know why I get like that sometimes. My dad dropped me off at the door to go park somewhere, and I went in. I was so surprised at how dead it was. I almost had to do a double check to make sure I was at the DMV. Somehow the nightmare stories of waiting for hours on end at the DMV just didn't seem like they were going to happen this time! A woman told me I could come up to her desk, and I told her I wanted to apply for the enhanced license. She asked for my current license, birth certificate, SS card, a bill, and I can't remember what else, and then she said I could have a seat while she scanned everything. A couple minutes after, my dad came in, and he went right up to the counter to renew his truck's registration. Even he was surprised at how slow it was. I was called back, and asked to step against the wall so she could take my picture. I took of the o2, because well, why not? I approved the picture, and was sent to the cashier. She did the eye test, which I passed easily (I almost think anyone could pass that easily, the chart wasn't that far away!), asked if I was going to make this a renewal of my license as well (which I said yes to, might as well do it now and not wait until next year), and told me I owed $89 (I donated $1 to the organ donation fund). I got my receipt, and my interim license, and voilá! Done! Less than 10 minutes in the DMV, and I can officially cross the Canadian border.

It was a little after 5 when my dad dropped me back off at home. I called my mom to let her know that NOW my license is officially signed so that people know I'm an organ donor. I have been registered with UNYTS for awhile, but now it was on my license, too. My family does know that I'm an organ donor, but I just like to remind them! I made dinner, and spent the evening hosting PHA chat, and watching tv. I felt a little funny when I went to bed, but I chalked it up to weather again and just feeling a little run down.

This morning, I had an appt with my primary doctor. This was the 4th appt in 2 weeks, and I have one more to go next week. I'm a little tired of seeing doctors, but at least the results have been ok! I got ready to go, and went to fill up Artie (my liquid oxygen Helios) from one of the big tanks, and gasped when I saw the tanks. I didn't turn them back on after I got home from the DMV the night before. Oh yes, I was wearing the tubing around the house and stuff, but I had no clue that NO o2 was coming out of them!! It's sometimes hard to even feel 3L of o2 going into my nose, so that's why I didn't pay attention. So that meant I wasn't wearing any o2 for about 15 hours!! OOOOOPS!!!!! I put my pulse oximeter on, and my o2 sats were normal (for me anyway), so I guess not having the o2 on all that time didn't really do much. I did have a little headache when I got up, but I blamed that once again on the weather. I'm still just so amazed that I forgot to turn the o2 back on!!!

When I went to my doctor's, the nurse came in to do the usual med check and blood pressure, etc. She mentioned to me that she was getting married next month, and I said congrats, and then I said that I make wedding jewelry. She was like really?? Well, she ended up asking me if I could make the bridal party jewelry! She wanted a blue color, and I showed her my Medic Alert bracelet I was wearing with a capri blue swarovski, and she got so excited and said it would be perfect with the dresses the girls were wearing! She needs 5 sets, a necklace and bracelet. I am also giddy because I already have the swarovskis in the color she wants!! So, I guess I'm glad that I spoke up!! I have to advertise myself sometimes!! LOL!

Tuesday, May 11, 2010

Letting Go

It's been a difficult couple of days for me and many of my phriends. Our dear phriend, Terry, has been taking off his meds today, and will peacefully (I hope) go when his time comes. It was an agonizing decision, I'm sure, by his loving wife and sons. He's been in the hospital since March with several problems, and nothing was helping him. I can't imagine how hard it was to decide to let him go. My love and prayers go out to the entire family. Terry, I will miss your positive attitude, your "laffin" and your hugzzzzzz. Love you so much, my phriend. May you find Mason and Racheal waiting for you to join them with open arms.

I also found out yesterday that another phriend who has been in the hospital since September wants out to go home and be comfortable. I don't understand why the doctors didn't do more for him, or transfer him to another hospital. I don't understand why no one really fought for better care. I am sad that this young man is no longer eligible for a lung transplant because he is way too sick. It makes me angry, too. I just wonder why things are the way they are sometimes. Anyway, if he wants to go home, I hope that he is able to. I hope there is peace and comfort for him, too.

Euan's dad wrote to me last night, and he described how Euan's nephew saw him 2 days after he died as a little boy. He told everyone that he was ok. A niece also told them that she saw Euan as well. I am a bit envious that these innocent children got to see Euan after he was gone, but, it at least lets me know that he is in a better place and much happier. I miss him a lot in the past couple days.

There is a celebration of Euan's life coming up in a few weekends, in the form of a movie. Friends and family have been invited to come, including myself. I still have to get my enhanced license, but even if I do get it in time, I don't know how I'm going to get to Toronto. No one seems to want to make the drive, and I am way too leery of driving that far by myself to an area I've never been to. I'm unsure what to do yet, but nothing matters until I get the license.

I went to my local PH doctor yesterday, and never got to see him. I did see his RN. She was very happy at how I've been doing, and kept telling me how impressed she was with how much I do for the PH community. I guess she is right, because when I left to go back to the reception area to make an appt for 5 months later, I met a woman with o2 who told me I was much too young to be wearing it, and wanted to know why. I told her I had PH, and she said she did, as well. I asked her if she ever receives the flyers for the support group meetings, and she said yes, and I told her I was the leader. She wanted to know why she would benefit going to one of the meetings. So I talked to her for several minutes, and gave her the green PHA card in case she'd like to check out the website. My mom and I left for the elevators after saying goodbye to the lady, and my mom gave me a big hug. Ah, so I guess that was what the RN was so happy about when she said she was impressed. :)

Wednesday, May 05, 2010

See You Next Year!

Monday I had all my appointments at the Cleveland Clinic in Ohio. It was a very long day, way longer than it should've been. We got to the clinic 45 minutes before my first appt so that I could get the bloodwork out of the way. After that was done, we headed up to the pulmonary floor, still way ahead of my scheduled time. The receptionist said she'd put me in for my pulmonary function tests, and that I shouldn't have long to wait. Wow, was she wrong! My first appt was scheduled at 9:45, the next one (the walking test) at 10:15. I didn't even get the first appt, and the 6 minute walk (6mw) didn't happen until 11am, when I was supposed to be in another building getting my echo done. It was frustrating to say the least, and I was so antsy by the time they finally got me that I felt like snapping. Grrrr!!

The tech who took me back for my walk started out by saying to me, "They told me you refuse to wear a mask, so you won't wear one?" I just looked at her and said, "Who told you that? No one has ever asked me to wear one." By mask, she meant an oxygen mask. So, she went to go find one. Then she has me on the o2 tanks, and tells me that when I do my 6mw, if my o2 drops below 60, I must stop and the test is over. Wow, that is a new one to me! But before I go on, let me explain how o2 saturations work. Any normal person out there has an o2 saturation (sat) of between 92-100. If someone drops below that, there is something going on, and sometimes the person needs to wear o2 to get it back into the 90s.

Then there are people like me. I have lived with low o2 sat levels most of my life. This is because I have pulmonary hypertension AND 2 holes in my heart. My blood is mixing all around, and I'm not getting all the o2 I need. However, because I've lived like this for 34 years, my body is used to it. My o2 sat level never hits 90. I'm lucky if I make it into the mid-80s. Resting, and on 3 liters of o2, I'm usually in the 70s, low 80s. But when I'm exercising or doing any heavy cleaning or whatever, I can drop into the low 60s, sometimes the mid-50s. I have been recorded the past 2 6mws into the high-40s. So, I think because of that, the tech just didn't want me dropping any lower than 60 sat, so that's why she told me that if I did, the walk was over!

So anyway, I'm on the o2, ready for the walk, wearing a mask I've never worn before ever, and she turns the o2 up to 15 liters. Yes, 15!!!! Most people have told me that they've never even heard o2 going up that high, but I knew it could because I've been told this before. I just never imagined I'd be put on it! So, I start my walk. The 6mw requires a person to walk up and down as much as they can in a hallway until the 6 minutes are over. Then it's measured in feet or meters how far the person walked. If the person needs to stop because they are getting too tired, that is fine, but the clock doesn't stop. So I kept going up and down the hallway, and the tech kept telling me how much time I had left. I wish I had told her not to do that, because it gets me anxious! She told me I was on 5 minutes, and I was thankful since I was really getting tired, but I didn't want to stop. 30 seconds later, she tells me we're done because I dropped to 58. Boooooo!! I wish she had just let me finish the last 30 seconds!! Oh well, it was over and I was back in a chair, trying to catch my breathe and boost my o2 levels again. I ended up walking 1050ft, which was less than last year, but last year I didn't have to stop. If I had actually finished the test, I would've probably been a few feet short or ahead of last year's distance. So basically, I remained stable in the 6mw, and I was so relieved that it was over!!

After more waiting and more lateness, we got to see my PH doc. He's great, and I'm so happy that he's kept me on as one of his PH patients. He's been focusing on lung transplants more, so he's only kept a select few PH patients. I'm one of them, whooo hoo! Anyway, TG was happy to see me and my parents, and he felt I was doing well because _I_ said I was doing well. And honestly, I am. With pulmonary rehab, I really think it's kept me pretty stable in the past year. So, there were no changes in my meds, and he had nothing else to suggest. Just keep up the good work!

He did agree to do my October support group meeting to talk about lung transplant as an option for PH patients. I'm glad!!

My parents and I left the pulmonary floor over 2 hours late, and headed toward the cardio building for my echo and visit with my adult congenital heart doctor. When we got into the building, my parents went to look for something to eat, and I just waited to get my echo done since I wasn't hungry yet. I waited almost an hour with a pager that buzzed when it was my turn. I felt like I was in a restaurant waiting for a table with that pager! I had a nice young lady who did my echo, and it was neat to be able to watch the screen while she did it. We chatted about this and that, and she finished the echo, and went to show the doctor to make sure she had enough images. She had to come back to get a few more, but then that was it, and I got dressed and went to find my parents.

I wolfed down a quick lunch that my parents had brought me, and then we were on our way to see my adult congenital heart doctor. More waiting, more waiting. Finally he came in and told me that my echo looked pretty good. My pulmonary artery pressure estimate was a bit lower than last year (although I didn't know the number yet), the ventricles in my heart looked good, but the thing that made me most happy was that the right side of my heart looked strong. That's what Dr. K. said. He seemed very pleased, and so did I! Seriously, again, I think it's a combo of the meds and the rehab doing the trick right now. We did talk about transplant as a possibility in the future, but he said it wasn't something they'd jump on right away. He said as long as the meds are helping me, that he'd like to keep me off any kind of list for as long as possible. Of course, I want the same thing. If it came down to needing a transplant, I would have to get a double lung and heart. And having 3 new organs suddenly is a major thing, and I'd be facing a ton more obstacles than I do now. So, after chatting about a couple more things, we said our goodbyes, and started making our way back to where the van was parked. Four hours later than we were supposed to be leaving!! I won't need to go back until a year from now, as long as I continue to do well!