Tuesday, December 30, 2008
When I got home, I checked my mail. I had an envelope full of leaflets of a wide variety of products. Things like, bags to keep your produce fresh, an angel for your car's visor, balls to keep your laundry from pilling in the dryer, etc, etc. Lots of "Seen on TV" stuff! I went through all of them, and put aside items that seemed interesting, and I wanted to take a second look at them later on. One of the items was a pedal exerciser. My eyes widened at this one! It looks like a very small version of a bike, only it doesn't have wheels at all! If you put it on the floor, you can pedal with your legs while on a chair. And if you put it on a table, you can pedal with your arms. OOOOOOOOOOH!!!!! I was just telling a friend how I wished I had a complete gym at home, because I would definitely try to work out more, especially in the winter. I mean, I have half the gym right now! My treadmill is great to have, and despite the fact I have one 5lb weight (I plan on getting the other one soon!), I can at least walk and use the weight like I would at rehab. But this pedal exerciser thingy would let me basically do my entire routine AT HOME!!! I put that leaflet aside, really considering purchasing it! I had my doubts sort of, until my good phriend, Mason, told me he has one and likes it. That's it, I was sold!! A bit ago, I ordered it, and in three weeks, I hope to be pedaling in the comforts of my home!! I wonder if I will really need to keep going to rehab after awhile?? Part of me is thinking yes, because I really do like the fact I am leaving to go there, and I like the people I exercise with. I think if I start trying to work out by myself at home again, I will get out of the routine quick! So, we'll see what happens. I'm just excited to be able to do pretty much everything I do at rehab at home! Just as long as I go buy that one weight, too, so I'm even!!!
The second store I went to was Bath & Body. I wanted to exchange a lotion I kept for myself from the lotions I had bought as Christmas gifts. I had one leftover, and I wanted to keep the pumpkin one, since I liked the smell when I sniffed it in the store in September. However, wearing it on myself was a different story! I thought my lungs were going to take off and run! So I stood in the line waiting for one of the girls behind the counter to help me, so I could just make sure I could exchange it (I knew they would, they know people don't care for certain scents, so they can't just say no!). One of the employees was on the other side of the counter with her back to me, and when she turned around, my heart did a little flip. It was my ex-best friend. Now, I do see her from time to time, but not often. I was just surprised to see her. I said hi, and she said hey, and then went back to what she was doing. I got called to the counter, and was told that yes, I could exchange, so off I went to browse for better scents! I picked up a Coconut Lime, which I do like because I have the spray. I looked some more, and found a Mandarin Orange. YUMMY!! The lotions are on sale right now for $3 each (a $6.50 savings, although I think they should sell them for that much all the time), and I figured I could swing 3 bucks for an extra lotion. So, back up to the counter I went. The ex-best friend was behind the counter, and she actually asked how I was doing. I just told her good, not much had changed, and she said same with her. It just feels weird sometimes talking to her. I miss her every once in awhile, we had a friendship for over 20 years. But I know that ending it was a good thing, and I don't really regret doing it. Most of the time, anyway. But I digress (again). I got the lotions, and was pretty happy!
I walked across the hall to Old Navy, where I was hoping to spend my gift card from Dee on something in there. They had a lot of sales, 60% off on many items, so I started looking around. Old Navy has truly disappointed me lately with the quality of their clothes. I remember buying tank tops from them about 5 years ago, and the next year, they must have gone with a different manufacturer because the quality of the tank tops the next summer went downhill big time. Anyway, I searched the store, found a few things I thought were ok, but wasn't entirely thrilled about, and thought maybe I'd use the card another time. When I got back up to the front, I went to a table that had "sweaters (hard to call them sweaters when they were rather thin compared to sweaters I do own!)" on it that were 60% off of $25. Never would I spend $25 of them, but with 60% off? Sure, why not?? So I finally had 2 colors I couldn't decide between: a pretty aqua, or a nice purply-pinkish shade. I finally decided to go with the aqua, but it took about 10 minutes for me to decide! I went up to pay for it, and it was $10. That was it?? When I got the change from the gift card, and I went near the front of the store, I looked in my wallet. Ooooooo, I had exactly $10 in bills left! And I knew I had the change for tax. Sooooo, I went back and got the purply-pinkish one! Yay!!
I left the store, and then went to the exit where my car was. When I opened the door, the wind shot it open so hard I nearly went with it!! Thank goodness my car was right there in the handicap spot, so I didn't have too far to walk. I got in, got myself home, got my purchaes in the house, and was happy that I actually did get out tonight to go to the stores. I think it was needed, and I think trying to go after rehab tomorrow would have wiped me out! So now it's off to bed so I will hopefully get up earlier than I have been in order to actually go to the gym!!
Sunday, December 28, 2008
Celebrating Christmas at Mandy's house has been nice. We've done it the past 3 years, because it's easier on them than having to drag the kids and presents over to my parents' house. We finished getting things ready for dinner, then sat down to a food overload!! We had ham that was so good, scalloped potatoes that were quite tasty (due to my dad's perfectly sliced potatoes!), asparagus parmesan (which I made, and I do think I'll make that again for myself!), sweet potato casserole (I ate a smidgen just to try it since I hate sweet potatoes, and I have to admit, I liked these! Mandy's a good cook!!), fruit salad, deviled eggs (Joanie's gooooooooood at making those), pickles (the kids just love the pickles), and a shrimp ring with cocktail sauce. I swear, I think I'm forgetting something!! We pigged out, that's for sure!
After some cleanup, we opened gifts. I think the best was seeing how much my niece loved her Pound Puppy from Joan. She kept telling everyone she had a puppy! She was pretty excited! We all seemed to get some very nice items, and it was a good time seeing the kids open up their stuff. After some more cleanup, we had dessert! I had my pecan pie, and Mandy had made her caramel pecan cheesecake pie thing that she had also made during Thanksgiving. Both were very yummy!! But by the time we finished eating desserts, I just felt like I was on food overload! We stayed and chatted for a bit longer, helped bring stuff upstairs into the kitchen, and then said our goodnights for the evening. It was a very nice time spent with my family, and a very long day!!
Friday, I went out to lunch with three of my friends. That was an enjoyable time, too. I got home, and took it easy before my two best friends and their kids came over. I can't believe how big the kids are getting. I hate that kids grow so fast!! We hung out for awhile, and then they took off. I was really tired that day, too, but it was nice spending time with friends.
Yesterday, I got out for a bit because it was in the 50s!! It was rainy, but still really warm for this time of year. Everything was melting, which wasn't good. There was a lot of flooding in many areas, causing a lot of problems. I had to pick up a prescription, and then I went to my parents' house to get my gift from Lisa. She got me pjs!! That means I got 4 pairs of pjs for Christmas. I did ask for them!! I'm not complaining though! They are all so nice, and I threw out 3 of my old pairs because they were really worn out. That's the reason I asked for pjs in the first place!! She also gave each of us a little bag with lotion and lip balms. I decided to pick the one called Hot Cocoa. And yes, it smells like hot cocoa!! It smells so good I just want to eat it! LOL! I also set up my parents' webcam that I bought them for Christmas. So now, we can connect with Lisa at some point, whenever they set theirs up (I bought them one, too!). Then I went home, and just took it easy again. I've been tired lately, and it's irritating me. Maybe the weather craziness has something to do with it, and the build up to Christmas. I don't know!
Today, the winds are horrendous, so I'm staying indoors! I'm working on a load of laundry, and maybe I'll do dishes. Just another take-it-easy kind of day!
Thursday, December 25, 2008
Monday, December 22, 2008
Sunday, December 21, 2008
I did a bunch of things today. I made egg salad, cleaned the dishrack to the best of my ability (it's stubborn!), made my pecan pie (must try not to eat a piece before Christmas!), and tried to finish working on a 6-strand black necklace I've been making with tiny tiny beads. I was about to start on it when my friend, Karen, called. Two hours later, I get off the phone, and it's almost dinner! Diane made chicken parmesan with spaghetti, and gave me a plate. I shared some broccoli with her, and dinner was YUMMO!! Oh man, I sound like Rachel Ray! I was so stuffed after eating, that I fell asleep on the couch for a bit. Mittens woke me up by scratching at the couch and meowing, but it was good he did! I didn't want to fall asleep for too long! I went to chat for a little bit, then decided to work on the necklace again. Then I get another phone call!! Gee whiz!! I put beads on the tray while listening to Michelle, and after we chatted for a bit, I had to go because my phone was dying. I wonder why!! I was Miss Chatterbox today! lol I finally finished the necklace, though. My eyes are bugging out, I think, because I worked with such tiny beads!! And I'm sure my fingers and wrists will be killing me tomorrow since the beads were so small, a needle wouldn't go through them, and I had to string all the beads one at at time. I don't know how much to charge for this necklace now. LOL I like it, though! I have to take pictures of it tomorrow. So, now that I am done with the necklace, and my eyes are tired, it's time to go to bed!!
Saturday, December 20, 2008
This is the view outside my bathroom window. The tire tracks on the sidewalk are from a neighbor who lives a block over. He drives around in an ATV with a small plow, and drives around the area "shoveling" certain people's sidewalks. We've known him for years, and I am glad he comes down my sidewalk!
A picture of part of my backyard and the house across the street. I took this from my bedroom window!
Thursday, December 18, 2008
Because......they are forecasting at least 7 inches of snow and bitter cold temps starting very early Friday morning. We'll see if it really happens. Sometimes the weather people say these things, and they never come to fruition. However, this storm started out in AZ yesterday, and if people in Las Vegas were seeing snow, I somehow think we'll be seeing it, too! The weather has been crazy everywhere the past couple weeks. Snowstorms in areas of the country that never see snow, temperatures that are colder than normal. It's not really a big surprised to us hearty Western NYers who experience the nasty winter weather every year, but for someone who is used to wearing shorts in the winter, dealing with cold and snow probably sucks for them!! lol
I need to figure out what to have for dinner. I'm not used to meeting for coffee when it's usually my dinner time. Maybe cereal and fruit! That's easy enough!! :)
Monday, December 15, 2008
I had a big box sitting outside my side door, from my friend, Karen! In the mailbox were many cards and a couple pieces of junk mail. After I got myself settled, I opened everything up, saving one care in particular for last. I finally opened that one, and it was from a dear phriend. Cathy made me a beautiful red swarovski crystal bracelet, and the size is PERFECT!! Perhaps she was listening one night when for some reason I ended up saying how small my wrist size is, and that my bracelets fit my three year old niece! lol I don't even remember how that conversation came up, but I didn't think it would be put to use! lol I just love my bracelet, and I called Cathy right away to let her know how much I love it!! She is a sweet, sweet phriend, and not only to me. She does so many kind things for all of her family and phriends, and I think she is a wonderful person! And Cathy, don't tell me to go on and say it was nothing!! Because it really meant a lot to me, and I know the things you do for others do not go unappreciated!!
I opened up my box from Karen after dinner, and took out four wrapped gifts. I have NO clue what she got me!! I gave her a few ideas a month ago on things I'd like, but she always surprises me! I will be waiting, of course, to open her gifts on Christmas morning, like I usually do!! Last year, my favorite gift from her was a shower radio. I can't tell you how much I love it!! So I can't wait to see what she thought of this year! :)
Guess I'll turn in early again tonight. I've been doing that the past few nights, I've just been really tired lately. I hope I'm not coming down with something!! My parents have been sick again, and I've been around my mom a lot. I'm downing the vitamin C!! lol
Saturday, December 13, 2008
Christmas dinner is going to be traditional this year, which will be nice! I was talking to Mandy today about anything I could make. I am definitely for surely sure, 100% making the pecan pie, because gosh darn it, we didn't have one during Thanksgiving!! But, that is dessert (or part of it, anyway)! We're having ham, scalloped potatoes, and brussel sprouts as part of dinner. I think I'll make asparagus again. I've made it the past 2 years, in the oven, and it's come out pretty yummy! I'm sure other items will pop in there somewhere. I can't think of anything else to add, but maybe I'll come up with something.
My parents' computer came on Thursday. Hopefully soon, I will be able to go over there and hook it up for them. I'm excited. You would think that seeing a brand new computer wouldn't be so thrilling, but, it is! I know I got my laptop over the summer, but I just love new computers. Yes, I'm a dork!! I'm just happy my parents (ok, really, my mom) will have something that works much better than their old computer!!
Thursday, December 11, 2008
I made a seafood dish tonight with crab and some veggies, something I just came up with. I like to throw things together sometimes and see what happens! Usually, it is pretty good! lol Then I spent the evening just watching tv. Nothing too exciting. I am off to bed now, hoping that tomorrow I'll finish my gift wrapping so that I can make some jewelry I've been wanting to make. I bought new beads on Sunday, and I got them yesterday, and they are pretty! I also bought beads yesterday. *sigh* I know, I really should be going to rehab for beads, not for my lungs. lol
Sunday, December 07, 2008
Winter has been hard for me the last couple years, because the weather seems to be more bitterly cold than snowy, like when I was a kid. We had huge snowstorms at least twice a season when I was growing up. It didn't seem like it was very cold when I was little, either. Lately, temperatures in the 20s and low teens seem to be occurring more often, and huge snowfalls happen maybe once or twice. When it's that cold, I don't go out. When it's like that for days, I feel like I'm trapped! Last winter, I had pneumonia, and I really didn't want to go out there because I was sick, and it didn't matter too much. I've been doing pretty good lately, and now I just feel like I'm waiting for the weather to get better so I can go out and get some stuff done. It's really aggravating. And when it's bitter cold outside for days at a time, it's even more frustrating!
I bet you're thinking, "Why doesn't she move??" Well, I've been asked this question plenty of times by many people. I don't move because my family and friends are here. So are all my doctors, and although Cleveland is a few hours drive away to see my PH specialist, he still wouldn't be close if I moved further down south. And yes, I know there are PH specialists in warmer areas, but I really like mine! You really would think I'd be used to living in the cold weather, since I've lived here all my life, but moving anywhere warm isn't really an option. Not unless someone wanted to pay for all my bills in Hawaii. THEN I would move!! hehe
Friday, December 05, 2008
The letter I got in the mail had about 8 other plans I could call to see if they A) covered all my meds, and B) worked with Accredo Pharmacy for the Tracleer and Revatio that I receive from them. I called 3 of the plans, two of which I got a live person right away. The first guy was sooo nice, I wanted to switch to that plan just because of him! He said they did not work with Accredo, but they worked with Medco. Hmmmm. I told him I'd think about it and call back, and he took my address to send me some information anyway. The person I talked to about the 2nd plan I called about just said no to Accredo, and I just said thanks for your time. I had to wait several moments for someone to answer at the third place, then I got a live person who told me in one long monotonous sentence that all the operators were assisting others, and would I like to give my phone number for someone to call me back? I said not to bother, I'd call back later!
As I sat there wondering what to do next, I realized that the company I already have a plan through had a different plan listed for no premiums. DUH!!! Why didn't I just call them first?? I wouldn't have had to start all over again with the meds and such! So, I called them. I got transferred to one department after I told the first person I talked to what I wanted to do to switch plans. I had nice Christmas-y music to listen to while on hold, but, I don't know if you've ever had to be on hold while on a cellphone. For me, the music is usually choppy, or comes in and out in waves. Kind of annoying! Eventually I got a very nice lady who helped me for about 15 minutes. There were awkward pauses while she was trying to look things up. Now, when I am on the phone, and someone is trying to look something up or wait for a computer to load, there is always this strange silence, and I feel like I have to do something so the person at the other end knows I'm still there. I usually sniff. I may not be sneezy or sniffly, but I sniff. Every minute or so (what seems like a minute). Finally the nice lady looked up the info I needed, and I had to be transferred back to another department to actually sign up for the new plan I wanted to be under. Another 5 minutes of choppy music went by before I got another lady. She sounded snobby, but she wasn't too bad. She asked a bunch of questions, read some terms about the plan, and got me set up for it all. So, hopefully something will come in the mail very soon!!
The time I spent on the phone was almost an hour. I guess that wasn't too bad! I would have saved myself some minutes if I had just realized in the first place my original company had another plan. **rolling my eyes**
And by the way, here's my site again, just because!
Thanks for looking!! :)
Tuesday, December 02, 2008
All in a matter of 8 years!!! How on earth did I ever live without him in my life??? I just don't know! Mittens has been such a joy to me, and has been here for me the entire time I've had to quit my job. He makes me laugh, he makes me cry, he makes me angry, but I'm sure if I had a human child, I'd feel all those emotions, too. I've told him all day today that it's been 8 years since I've been his Mommy, but of course, I don't think it means anything to him. It was just an ordinary day! He did, however, curl up under the blanket with me on my bed to take a nap. We haven't done that in so long (he's usually sleeping in his huge box I can't get rid of), so it was rather nice! I am really hoping to have my little man, as I like to call him, for at least another 8 years!!
Monday, December 01, 2008
Yesterday I was busy doing little things around the house. I got a couple jewelry orders prepared for mailing, one which went out today. I made a bracelet to complete an order, so that's all set to go soon. I got a bunch of music to make a friend a Christmas CD, then I made a copy for my Mom since she said she'd like one. I finally finished filling out the paperwork for a health care proxy, which really needed to be done a long time ago, but I guess better late than never!! Now I have to give copies to my two best friends who I asked to be my proxies, and to my PCP, who I see on Thursday. I also finished balancing my checkbook for the month, and trying to figure out why I had so extra money left. That never happens! LOL! I also made a pot of beef and noodle soup, which has now turned into a beefy stew! It's still tasty, all the same. I really wasn't tired doing all this, and I didn't take a nap. Which was kinda nice not to need. The gas man called me around 9pm, and we talked for an hour. I do really like talking to him. We have no awkward pauses or anything, and it feels like I've known him forever. After I got off the phone, my friend, Rob, texted me to see what I was up to. He's an old friend from college, and he was home for several days. He ended up coming over around 11, and didn't leave til 3am! We just couldn't stop chatting, and for some reason I wasn't even tired when he left. I sure was tired today, but not exhausted. I guess that was a good thing! I enjoyed his visit, we usually have fun hanging out if he gets a chance to stop by when he's home.
Today I had bloodwork done, went to the ghetto dollar store, then the credit union, and then the post office. I got home just in time to miss the sleet that started a bit after I got in the door. Whew! I didn't do too much more besides eating lunch, and then taking a nice nap!!
It's hard to believe it's December 1st. I can't believe that another new year is right around the corner. Every year seems to go by faster and faster. Sometimes I think it was easier being a kid, because time was so slow! I am hoping for a great holiday, and not only for myself, but for my family and friends, and phriends who could certainly use a good one. Here's hoping the month doesn't fly by too fast, even though I know it probably will!!
Sunday, November 30, 2008
Saturday, November 29, 2008
*SusanT (I am reminded of her beautifully kind spirit every time I get into my car because I have a starburst hanging from my rearview mirror that she sewed into a birthday card she gave me the year before. I think I miss her the most)
*Shelly (a Myspace phriend with a really wonderful personality, who used to send me uplifting messages at moments when I seemed to need them the most)
*Stella (who sadly may have passed from cancer and not PH, but still very much missed despite the reason)
*Brenda (a very sad loss no one was expecting, and even sadder to find out about several weeks after she actually had left us)
*Tara (a fellow bead addict who was so thrilled learning about my sister's pendants when I called her one time to see how she was doing, despite the fact she wasn't doing well at all).
I am trying to hard to think if I've missed someone who has passed this year, but these ladies are the ones I am remembering offhand. I know they are so much better off now, breathing freely, and without pain and suffering. But they are missed and remembered by so many, and I don't think I'll ever forget them! To Sue, Shelly, Stella, Brenda, Tara, and all the other phriends who have passed this year, I hope you know how much you are missed.
Friday, November 28, 2008
I took about 3 and a half hours to put up the tree, decorate it, and put out all my other decorations. I took a couple breaks, one being lunch break. As I sat in the kitchen eating, Mittens was in the computer room (with the door shut), banging on the door and putting his paws underneath it because he wanted to come out! But I have to shut him out while putting up the tree, or he'll try eating it the entire time. It's bad enough he eats it!! I don't need him gnawing on a branch while I'm trying to put it on the pole!!
So my decorations are all up, and my lights plugged in, and turned on (with a timer, so I don't have to keep going behind the tree!). Last night when I got home, I got ready for bed, got my laptop and got under the covers, and shopped for my last remaining gifts online!! I am now done Christmas shopping, except for one more item I want to buy, and I'm not going near the Outlet malls for it this weekend!! Now I need to get a bunch of Christmas cards, and gift wrap! And stamps! And I think I'm set! Maybe!!
Accredo Therapeutics - provides all FDA-approved treatments for PH, as well as nursing and pharmacy services to PH patients
Actelion - developer of Tracleer (bosentan), and also Ventavis (iloprost)
Caremark - offers support in nursing, pharmacy, and distribution of Remodulin and Tracleer
Curascript Therapeutics - provides Remodulin and Ventavis
Encysive Pharmaceuticals - developers of Thelin (sitaxsentan), which is still in Phase III clinical trials
Gilead Sciences - maker of Letairis (ambrisentan), and also distributes Flolan
GlaxoSmithKline - maker of Flolan
Lung RX - a part of United Therapeutics which focuses on sevaral pharmaceutical products
Pfizer - maker of Revatio (sildenafil)
United Therapeutics - pharmaceutical company dedicated to development and marketing of therapies for lung diseases, focusing strongly on PH
Thursday, November 27, 2008
*I am thankful for God allowing me to wake up in the morning to a brand new day. For it is one more day that doctors weren't sure I'd have many years ago.
*I am thankful for my loving cat who greets me every morning as I come out of the bedroom after waking up. I have had him since dealing with increased symptoms of PH, and he makes me happy when I am feeling crappy or down.
*I am thankful for being able to take care of my personal needs without getting so short of breath, like showering and dressing. It means the medicines must be working, at least for now.
*I am so thankful for the roof over my head, and the food I can get, even if I am getting help from the government to survive on my own. Being on disability and food stamps once hurt my pride, but I know that without them, I would not be here.
*I am thankful for all my doctors. Every one of them cares about my health concerns, and every one of them have provided the best answers possible to my questions regarding PH and my general health. I feel terrible for those PHers who were misdiagnosed over and over again, but thankful they finally found a doctor who would listen and understand what they were going through, and could finally get help.
*I am thankful for my family, who have been so supportive all my life. They have all helped me in so many ways, and I love them all so very much.
*I am thankful for my friends, especially the ones who have stuck by my side despite my PH. I have lost a few friends, especially one who I thought was my best friend, because they just couldn't handle the symptoms that went along with PH. But for the friends who have been there for me, I don't know how much I can thank them for that. There aren't enough words for that. I just hope they know how much I love them.
*I am thankful for my phriends, who are the first group of people who completely get me and understand what I've been dealing with for 33 years so far. I was amazed when I found them, and I still can't believe sometimes that there are other people out there going through what I do. I'm very thankful I found them!
*I am thankful for my medicines, which help me get through my day (usually). If I wasn't finally put on a treatment in 2003, who knows where I would be right now?? I am thankful, also, for the oxygen. Despite my hate for it, I know it is a tremendous need, and I make do with it the best I can!
*I am thankful for my day, even if it was a bad one. I am thankful that some days I can do so much, even though I know I may have to pay for that the next day. Every day is a gift to me, and I try not to complain if it didn't go so well. Hopefully, I will wake up to a new day, and once again, my cycle of Thanks will begin.
Wednesday, November 26, 2008
Cutting back on sodium seems like it is so hard! Salt is in almost everything, so how does one do it?? Here are 5 tips found here on the PHA website on how to cut or limit salt in foods we eat:
1. Throw out your salt shaker. Do not use it in food preparation or at the table.
2. Check the serving size on processed foods when adding up your sodium intake. Purchase products with no more than 200 mg per serving.
3. Eat lots of fresh fruit and vegetables.
4. Watch out for sodium in non-food items including medications and water softeners.
5. Decode your food labels...
**“Sodium-free” means less than five mg of sodium per serving.
**“Very low sodium” means 35 mg or less per serving.
**“Low sodium” means 140 mg or less per serving.
**“Unsalted” and “no salt added” mean only that no extra salt was added; they are not
necessarily low sodium foods.
**“Healthy” means less than 360 mg of sodium per serving.
Tuesday, November 25, 2008
I hosted chat today, which was a little slow at first, but then several regulars came in for a bit. Around 3, I left so I could work on restocking my jewelry site. I didn't pay attention too much to what I sold at the jewelry party, so I had to go through everything to figure out what was missing. Thank goodness I take pictures of everything! I realized I sold quite a bit! I still have more items to put up in the store tomorrow, and after that, I can figure out what items I'd like to make more of. I hope to start making different necklace styles during the winter. I say this all the time, and then I don't end up making anything for weeks at a time. At least it'll give me something productive to do!!
Tomorrow I think I'll work more on the jewelry stuff, but I seriously must also clean the fish containers. A couple of them have such low water levels, I don't know how they are swimming. I know, I'm a terrible mother!! I was going to try getting to it today, but after I washed my dishes (which also desparately needed to be done), my hands were so dry and cracked, I couldn't try cleaning all the fish, too. So, that's top priority tomorrow. I'm sure the bettas will appreciate it!
I'm off to do stuff before bed. I don't feel too tired right now. I did take a half of a muscle relaxer tonight, but obviously that's not making me sleepy. It's also not helping my leg!!
1. Obtain and maintain copies of all of your medical records in a binder.
2. Seek an evaluation at a Pulmonary Hypertension (PH) Center.
3. Read PHA’s 280-page book, Pulmonary Hypertension: A Patient’s Survival Guide.
4. Make a list of all of your medications.
5. Ask your doctor if a handicapped parking permit would help you.
6. Make a written list of all your questions and take notes when the doctors and nurses answer them.
7. Educate yourself about your health insurance plan.
8. Keep a written list of all of your doctors and their contact information.
9. Evaluate your financial situation.
10. Get education and support.
**Just a personal note about #5.....I felt so stupid asking my doctor to fill out part of the handicap permit application many years ago when I applied. I wasn't embarrassed to ask my doctor to fill it out. What bothered me was the fact I needed it at all, and that I was only 25(?) when I applied for it, and looked like nothing was wrong with me. I wasn't wearing oxygen at the time, so every time I pulled into a handicap parking spot, I was so self-concious of being in that spot. If someone was around before I got out, I would pretend I was busy with something in the car until I noticed they weren't there anymore, and then I could step out. It's still a feeling I struggle with, but not as much as when I first got the permit. I know that it's something I really NEED!! There have been times where I've needed to go to a store, and if there isn't a handicap spot available, I'll just leave and come back another time. Especially in the winter, or if I'm not feeling that great. A handicap permit is definitely something to consider if you feel the need for one!!
Monday, November 24, 2008
Question: What issues should PH patients consider before undergoing general surgery, specifically relating to general anesthesia?
Answer: Anesthesia and general surgery in patients with pulmonary arterial hypertension (PAH) are associated with increased risk of morbid events and death due mainly to right heart failure, abnormal heart rhythms, and postoperative low oxygen levels. Successful management of patients with PAH undergoing general surgery requires a multidisciplinary approach involving the pulmonary hypertension specialist, an anesthesiologist well-versed in the management of PH patients and right heart failure, and an experienced surgeon. A careful analysis of the pre-operative and operative risk factors, and a plan for intra-operative management and early recognition and treatment of post-operative complications should be undertaken.
There is limited literature describing the peri-operative risk of morbidity and mortality in patients with PAH undergoing general, non-heart surgery. However, compared with other high risk patient populations undergoing general surgery, the peri-operative risk is greater in PAH patients. The risks seem to be higher in PAH compared to other causes of PH. The complications can occur within several days of the surgery. Peri-operative risk assessment involves an individualized approach taking into account the type of surgery, the functional capacity (World Health Organization [WHO] functional class), hemodynamic severity of PAH at right heart catheterization, the functional status of the right side of the heart, and any other medical condition present.
Those patients who undergo low risk operations and have low risk clinical features will generally have a good outcome. Those who undergo intermediate- or high-risk surgery and/or have high-risk clinical features may have poorer outcomes. Low-risk operations/procedures include skin, cataract, and breast surgery and endoscopic procedures (i.e. gastrointestinal, urinary tract). Intermediate-risk operations include carotid endarcterectomy, head and neck, gynecologic, gastrointestinal/intra-abdominal, orthopedic, prostate and thoracic surgery. High-risk operations include major surgery that is done in an emergency situation, aortic or other major blood vessel surgery, and liver transplantation.
Clinical features that predict a low risk include good functional status, in that the patient does not have symptoms of shortness of breath, fatigue , chest pain or lightheadedness with ordinary physical activity (WHO class I), favorable hemodynamics at right heart catheterization, good right heart function on echocardiogram (heart ultrasound) and normal lab tests. Features that predict a high risk include poor functional status (patient has marked limitation of physical activity and can be symptomatic even at rest [WHO class III, IV]), unfavorable hemodynamics at right heart catheterizaiton, and echocardiogram showing evidence of an enlarged, thickened and/or poorly functioning right side of the heart. Laboratory studies consistent with a stressed right side of the heart (high B-type natriuretic peptide [BNP]) and reduced kidney function are also predictors of high risk with general surgery. Other concomitant medical conditions, in particular a history of pulmonary embolism (blood clot to the lungs) can also increase the risk of general surgery.
In situations of elective general surgery, a careful pre-operative evaluation should be performed by an anesthesiologist experienced in the care of the PH patient. The aneshesiologist in communication with the surgeon and PH specialist can determine the best monitoring approach (which in cases of intermediate and high- risk surgery will often require the placement of a catheter in the right side of the heart to guide therapy), the best anesthetic approach (limited regional, epidural block, or general anesthesia), and a plan for pre-operative, intra-operative, and post-operative management of the pulmonary hypertension and potential worsening of right heart function.
Nerve blocks are usually considered in patients undergoing surgery to a foot or arm. Epidural anesthesia (a catheter placed in the back just outside of the sack of the spinal cord) can be successfully employed for repair of an artery in the leg, gall bladder surgery, Cesarian section, and other gynecologic procedures.
General anesthesia is usually reserved for higher risk operations. Most peri-operative deaths occurring in patients receiving general anesthesia are associated with the surgical procedure itself and the underlying disease rather than the general anesthesia per se. Certainly, there are some anesthetic agents that should be used preferentially and others avoided in PH compared to other patient populations. The experienced anesthesiologist will choose the most appropriate agent or combinations of agents depending on the type of operation, and the particular patient profile.
Peri-operative management includes assessment and optimization of the patient’s baseline clinical state before the surgery, avoidance of factors that can cause the pulmonary arteries to constrict, careful management of ventilation to assure optimal oxygen delivery, the administration of appropriate drugs that dilate the pulmonary vessels, and early post-operative identification and treatment of right sided heart failure and any factors that could predispose to its development.
In summary, when undergoing general surgery the most important consideration from the PH patient’s perspective is to assure that the team involved in the pre-, intra-, and post-operative care is experienced in the management of patients with PH/PAH.
Question answered by:Teresa De Marco, M.D.UCSF Medical CenterSan Francisco, Calif.
Sunday, November 23, 2008
When I went downstairs after I got to Mandy's house a couple hours before the party, I saw all of her stuff on a couple tables. I was overwhelmed by how much she had made. I also couldn't believe how gorgeous everything was!! She had glass pendants of all various shapes, sizes, and colors. She had glass magnet sets. She made really pretty (but apparently pain-in-the-ass to make) bracelets! She also had candle holders that were really nice. I am a glass-a-holic, and I wanted all of it!! LOL!
I set up all of my jewelry, and had to keep squeezing boxes together so that everything fit on the table. I keep forgetting how much stuff I have! Everything got set up, and then I helped prepare all the food we had. My friend was one of the first to arrive, and after that, the night just seemed to go by quick! We had many people show up, jewerly was tried on, put back, tried on again, ooooo'd and aaaaah'd at. Sales racked up for both Mandy and I. It turned out great! Between the two of us, we made over $600!
I also had a sheet of squares to sell, to raise some money for the PHA, being that it is still Awareness Month! The winner got $25 in jewelry. I sold $40 in squares, so that will go to PHA!!
All in all, it turned out to be a great evening! I had a good time, and despite my aching feet when I got home, I'd do it all over again!! Now I need to re-stock my store on Etsy, because a ton of stuff expired, and I need to re-price things. The only bad thing I didn't do for myself last night was write down what I sold. Because now, I have to go back and look through all my stuff, to see what is missing!! lol Oh well, I have a lot more time now to do that! Then maybe I can sell more there!
I started PR in September, and I was nervous about it at first. When I walk on my treadmill at home (which is so sporadic lately, and not good!), I usually tire out easily. But then some days I do so well. My biggest problem has been consistency. It isn't good to exercise for quite a while and then just stop. The body gets de-conditioned that way, and if exercising is started up again, it's like starting all over. Pulmonary rehab has at least made me go somewhere to exercise 2 times a week, and sometimes I walk an extra day at home. Here is what I do at PR:
*I get my portable oxygen set up when I get to the rehab gym, grab my chart, write down goals for the day if the respiratory therapists haven't done it, and check my heart rate and oxygen sats.
*I do warm up exercises! There are pictures on the wall to follow. I exercise my head and neck, shoulders, arms, and legs. After that, I check HR and sats again. I write them down on my chart.
*The 4 exercises can be mixed up in any order I'd like to do them in. Their only request is that I alternate arm and leg exercises. So if I do a leg exercise, I need to do something with my arms after! Usually I like to walk on the treadmill first. When I first started PR, they only had me doing a few minutes at at time, until I built up to 10 minutes. After that, they like to increase the incline slowly. And obviously, I do what I feel I can do!! After walking on the treadmill, I check HR and sats, and write them down.
*I lift weights after the treadmill, and right now I'm using 4lb weights. They started me off with 2lbs. There are pictures on the wall to follow along in using the weights, and I do 10 repetitions of the exercise slowly. After that, I check HR and sats, and write them down.
*There are several different pieces of equipment to use for legs besides the treadmill, and my favorite lately is the stationary bike. The last time I rode an actual bike was when I was maybe 11 or 12, and I ran into a tree, fell off the bike, and sprained my ankle! I was all the way down the street from my house, and actually I live across the street from the tree today. I couldn't get up, and my mom saw me because she was on her way to work Bingo! Anyway, that was the last time on the actual bike! So when I tried the stationary bike for the first time at rehab, I realized how much I missed biking! I had to slowly work up to 10 minutes on that machine, because it certainly can kill your legs if you overdo it. After I finish riding, I check my HR and sats, and write them down in my chart.
*The final exerciseI usually do is the arm cycle machine. I have found the arm cycle fun, until I added a tad bit of resistance. Oh my, that can be tiresome! But I can still do 10 minutes, and, I can certainly feel the arm mucscles I'm getting from it!! I check my HR and sats afterward, and put them in my chart.
*Cool down exercises are the exact same thing as the warm ups, and it's the final thing I do at the end of my exercise routine. I follow along with the pictures on the wall, and after I'm done, I check HR and sats for the final time, write them down, and then I'm done! Everything takes me about 45 minutes to do. So far, I've been loving it. It's the first time I've been to a gym, even if I'm exercising with people way older than me! But, it's fun!! And I think that any PHer, if they have the chance to go to pulmonary rehab, SHOULD go!!
For a few more exercising tips, go here!
Saturday, November 22, 2008
*If you’re not comfortable doing your own training, contact your specialty pharmacy to organize and conduct the training for you.
*Ask your EMT to put you on the BOLO, or “Be on the Lookout” list, which is a list of people who should be the first to receive attention, a check-in, electricity, or specific needs, in the event of a blackout, inclement weather, or disaster.
*Ask your EMT to tag your number in their system so that if you ever call 911, they’ll be automatically alerted that you have special needs.
*Introduce yourself to the staff of your local fire department.
*Get on a list with your fire department, and provide them with answers to the following questions:
**Are you on special medical treatments?
**Do you use life sustaining oxygen?
**Do you have liquid oxygen in your home?
*Think about what you would need from your local utility company in the event of a power outage or natural disaster (e.g. life sustaining equipment, refrigeration, oxygen, batteries and electricity).
*Take advantage of stickers you can put on your window that alert your local EMS to your condition and direct them to an “EMS File” detailing your specific needs, which you can keep on your refrigerator. They are sold by pharmacies, grocery stores and other local vendors.
Friday, November 21, 2008
*I wear a Medic Alert identifier to convey critical health information. I’ve included “Pulmonary Arterial Hypertension,” and such applicable information as “Do Not Stop Pump,” “On Sildenafil -No Nitrates” and/or “Takes Coumadin”
*I always carry a cell phone and/or let people know where I am going if I am traveling alone. I have signed up for a roadside assistance program.
*I maintain a current list of all of my medications. I’ve included concentrations, doses and rates for infusion and/or oxygen therapy.
*I have a three day supply of all my medications and supplies. I keep it with me at all times.
*I keep a current list of emergency contact information.
*I am involved with my PH center in teaching local EMT/hospital personnel about PH, my therapy and how to respond in an emergency.
*I have consulted my PH-treating medical professional and s/he has assured me that I have all the items I need.
Thursday, November 20, 2008
My mom picked me up about 40 minutes later, and after going to the post office, we came back around my house, and stopped to ask a few workers when the gas would be back on. One of the guys said it would be awhile, but they'd knock on people's doors to let them know it was on and to turn the pilot lights back on. I said we were going grocery shopping, and the guy said it would definitely take that much time, maybe even more! Gee whiz, what did they do??? Anyway, we went to two grocery stores, and I got back around 5pm. Still no gas! The heat was at 61 in the house, but for some reason, I was really warm, so I stayed and put stuff away.
I was on the phone with Mandy when my doorbell rang around 5:30. It was a gas man! He said he was going to turn the gas back on, but he had to check a few things out first. I said that was fine, turned the light on for him, and mentioned something about how the gas smell had been bugging me because I had health problems. He was like really? You look good to me, and I bet you get asked out all the time. I was like, naa not really (thinking to myself, hmmmm, he's hitting on me!). He said really?? I'm surprised! And he goes down into the basement. He came up a couple minutes later, had to go outside, came back in, and started filling out some paperwork. I ended up telling him I have pulmonary hypertension along with a heart defect, and again he was so surprised because I didn't "look the part." I told him my meds must have been working that day (thanks to Merle for that response!). I also said I wear oxygen all the time, I just hadn't put it back on yet after getting home. We ended up chatting back and forth for like 20 minutes! I did tell him it was PH Awareness month, so now another person was informed about the disease! He was getting ready to leave and said something about maybe stopping by some time and saying hi. Then he said, or maybe he could give me a call some time. It took me by surprise a little, but I told him I had a business card since I made jewelry, and I gave it to him.
THAT IS SO NOT ME!!!!!!!
I could tell he was surprised I offered my number, but kinda happy at the same time. He said he'd give me a call, maybe this weekend. !!!!!!!!!!!!!!! He did sorta spew out at the last minute that he wasn't married, never has been, and doesn't have kids. I didn't even ask that! We said our goodbyes, I shut the door, and just kinda stood shell-shocked for a few minutes in my kitchen with a smirk on my face.
Not only did I make him aware of PH, I gave him my number!!! And even after I told him about wearing the oxygen, he still was happy to have my number!! HMMMMMMMMM!!
So that is my PH awareness blog of the day. Kinda a bit on the personal side, but hey, I spread the word! LOL!
Wednesday, November 19, 2008
Cold & Flu Season Tips:
*Always get a flu shot!
*Never use antibiotics for a cold or flu. They don't work!
*Never share or use leftover antibiotics.
*Stay healthy! Use disinfectant cleaner on hard surfaces every day.
*Don't forget to wash your hands often. Use an antibacterial lotion if washing your hands is not available.
Here are a few of my own tips for dealing with a cold or flu:
*Get plenty of rest! This may seem like a silly thing to point out, but some people (including myself!) don't get enough rest while trying to deal with a cold.
*Make sure to have soups on hand, or ingredients to make soups, which are great to eat if you aren't feeling well!
*Get plenty of fluids. Some people may need to watch their fluid intake, but it is still important to make sure to stay hydrated while dealing with a cold.
*Do NOT take an decongestant! Decongestants are not recommended for people with high blood pressure (including PHers, since we have high blood pressure in the lungs) because they constrict the blood vessels. Our blood vessels are already constricted, so taking a decongestant would make things worse!
Tuesday, November 18, 2008
When my parents brought me in for the appointment with the cardiologist at Children's, the doctor took one look at me, and took me before all the other people in the waiting room. They knew something was very wrong! They did an echo, EKG, eventually an RHC (right heart catheterization, and finally told my parents that I had atrioventricular canal (a congenital heart defect, two holes in my heart), and pulmonary hypertension. They told my parents there wasn't much they could do, to take me home and allow me to live a fairly normal life. They weren't sure if I'd live a year (I was diagnosed at 9 months old), or 50. I think they were really thinking I wouldn't make it past a year! They told my parents to seriously consider having another baby right away. Of course, my parents were scared to death with this news, but they brought me home and did the best they could for me!
I spent my childhood very short of breath most of the time when I played with my sisters, or with the neighborhood kids. I did run around with everyone, trying to keep up, but I had to take a lot of breaks! Naps were a normal, almost every day occurance. I never played sports, or even took gym classes in school. I was limited on what I could do,but my mom still found other ways I could participate in things to feel like I wasn't missing out on too much. When my classmates were off at gym, I would go down to the first grade classroom and help the teacher with things. I was in 7th and 8th grade, and it was during that time I decided I wanted to become a teacher myself!
High school and college were more personal challenges for me to deal with. I wanted to be able to do things my peers were doing, but I knew that I couldn't do most of them. My heart seemed to handle things well so far, not having any major problems growing up. I went to my cardiologist regularly, getting echos every time I went. No issues really. Growing up, the only med I was ever on for my condition was digoxin, for the heart. Pulmonary hypertension seemed to just be in the background, and I never knew exactly what it was, let alone how to say it!
When I got out of college, I started subbing for a couple months before I found a job as a preschool teacher in a daycare. I worked there for a couple months before I got another job as a preschool teacher for Headstart. It was working at Headstart when my health slowly started to decline. My classroom was on the 2nd floor, the cafeteria where the kids had to eat (and we were required to eat with them) was in the basement, so climbing 6 flights of stairs a few times a day started really hurting me. Not to mention that little preschoolers are germ factories! I also was dating at the time, trying to go out partying almost every weekend, and going back to grad school for my masters' degree. During my third year at Headstart, I really started getting sicker. I had double pneumonia, bronchitis, and was on my third respiratory illness when my PCP told me, with tears in her eyes, I needed to quit my job. But honestly, I don't think I'd still be here if she didn't tell me to do that!!
I quit my job, but decided to finish my masters'. I spent a lot of time recovering from being sick while working, and just getting a lot of rest besides going to school. My PCP eventually referred me to the Cleveland Clinic for a lung transplant evaluation. I went for the first time in 2001. I was put on oxygen 24/7, and told I needed to start Coumadin. The next couple times I went back, transplantation was talked about, but I didn't have any testing done for it. In 2003, I was told I was going to start Tracleer. I had no clue what this was, the doctor really didn't tell me! A month later, I realized it was a pill. Whew! I had read about Flolan, and I sure did NOT want to start that!
I began Tracleer on October 12, 2003. People pick on me a lot for remembering dates for things, but remembering a date that significantly changed my life is no laughing matter. I didn't notice any changes with the Tracleer until maybe a month after starting it. It was extremely subtle, but a change, nonetheless. I went to vote for something, and on the walk back from the building to my car in the parking lot, I realized I wasn't short of breath! I couldn't believe it! I got back home, walked from my garage to the house (which sometimes causes me to get SOB), and felt ok! I started crying! My life was all about being SOB most of the time doing anything physical, and here I was, feeling OK. After that, the Tracleer kept improving my condition. I went from never being able to take gym at school, to walking 2 miles on the treadmill!! It was like magic!
Over the next few years, I felt the Tracleer had sort of tapered off. I asked about Revatio, and started it on August 16, 2007. After being on it for awhile, I felt it helped, but I did increase the dosage again about a year later. Between Tracleer and Revatio, I feel good most days. Yes, I still get tired, yes I still get SOB, but it's not as bad as usual when I was growing up. I've learned to make adjustments to whatever I do. I've learned to take my time with things, and not overdo something. If I'm going to exercise one day, I won't also clean. If I'm going to attempt vacuuming, that will be my exercise! If I'm going to have a full day being out somewhere, I make sure the next day is for rest. I usually stick to what I say I'm going to do, although I can be hard-headed about stuff and push my limits every once in awhile. But for the most part, living with PH has been much easier for me with medicines that were not even available 33 years ago when I was diagnosed. I thank God for allowing me to have so many years so far, and I pray it can continue!!
During the past 7 years since I've been going to Cleveland for treatment, I have found a new focus in life, PH awareness. Since I found out about the PH Association, I've been going there daily, sometimes several times a day, to read the message boards and chat with phriends. I host 2 chats there, and I answer questions or respond to posts when I feel I can share something useful. I also run my own PH support group in Buffalo/Niagara Falls. That was definitely a blessing for me to start, not only for my own sense of belonging, but for those who join, too. I keep busy with my life, and I surely rest when I need to do so! I'm managing with my PH, and I can only hope it continues!
Monday, November 17, 2008
The beading has been keeping my mind off of everything going on with Mason. Not that I am not thinking of him every hour. It's just that, if I didn't have anything else to occupy my time right now, I think I'd be more depressed about it all!! He is fighting, I know. I was told by his mom that today he briefly opened his eyes. That made me smile! I have said so many prayers that he'll get through this, and I know so many others have said them, too. Hopefully I will hear more tomorrow!!
My first meeting was in October 2005. I had a handful of people, but I kept reminding myself that a support group was a meeting of 2 or more people. I made the meeting a general one, explained my life story with PH, and why I wanted to start the group. Everyone shared, everyone had questions for each other, and boy did that 2.5 hours fly by quick!! It was a success, and I was so relieved!!
I have had probably 10 meetings now in the past 3 years. It's hard to get people together in Buffalo when the snow is flying in winter, and it's freezing. If I don't want to go out there in the cold because I know how much it affects me, then I sure don't expect fellow PHers to drag themselves out for a meeting in the middle of winter either! But the meetings I have had slowly start to bring out more PHers. The last meeting I had in October brought together 20 people, 8 of them PHers. We may still not be a large group, but we sure do enjoy each other's company, and learn a lot! And the best part about it? I get to socialize with real live people who are just like me with this illness. I also get thanked by each one of them for providing them a way to share their feelings and concerns. It's definitely a great feeling, to know that I'm not only helping myself, I'm helping others living and coping with PH!
To find a PH support group near you, please go here.
Sunday, November 16, 2008
Saturday, November 15, 2008
Phriends have become so important in my life. When I pray at night, I ask God to Bless my family, my friends, and my phriends. Every one of my phriends have something they are dealing with, whether it is PH related (usually it is), or something else that is going on in their life, that needs prayers, so I include them and care for them just as much as I do for my family and friends.
I didn't know what to post today about PH until this afternoon. One of my phriends is in dire need of prayers and good thoughts. He is a phriend I care for dearly, one of my best buddies online. Mason is a 20 year old double lung transplant recipient, and he has had it rough since the summer. He started chronic rejection, and when he finally started getting answers after switching back to his old doctors in L.A., he thought maybe he'd finally be able to start feeling better. This hasn't quite happened. He was in the hospital several weeks ago with issues, and just a few days ago, he went in again. Only this time it seems to be worse. There are so many phriends praying for him, worrying about him, and hoping beyond hope that he will pull through this. I feel like I've been begging God on and off today to please please please let Mason get through this, and to let him get stronger. I know God has plans for Mason, and I know I'll never understand what they are. But I am hoping God will hear the prayers of so many who want this young man to get better, to be able to recover and live a life he's wanted to live. Mason is the reason I wanted to post about phriends today. Because he truly is one of the closest phriends I've had, and I am having a hard time not talking to him many times a day like we usually do!!