Tuesday, May 31, 2011


Saturday I opened a letter in the mail from my dentist. I thought maybe I had a bill of some sort from the unexpected visit I made in January to figure out what was going on with my mouth. Instead, it was a letter stating that I was no longer allowed to go there because of the rise in Medicaid costs. My dentist will not be taking Medicaid patients anymore. THIS SUCKS. I stayed away from the dentist for several years a long time ago because I had such issues with going. I was told about this dentist and his office probably at least 8 years ago, maybe even a little longer. Even then, it took a very long time to trust anyone with doing my teeth. In fact, it wasn't really the dentist himself I had to get used to, it was the hygeniest. I had a couple of them who were incredibly rough on me and made my gums bleed terribly. Now, I admit that when I started going there, I wasn't that great with flossing. And it took me years to even get myself into the habit. But really, my gums were that horrible that when the hygeniest made me rinse, I was spitting out mostly blood?? Come on! Finally, on one of my appts, I got Luann. Although I was very nervous because I didn't know what she'd be like, she put me at ease and did a great job. Yes, I did bleed some, but definitely not as much as previous visits. Over the last several years, Luann has been the ONLY hygeniest I'd let touch my mouth. In fact, it's written in my chart that I can only see her. I've come to trust her very much, and she just does her job so carefully and so well. And she LOVES her job. But now??? I can no longer go there, and that means I have to find a place that will take me and my stupid Medicaid, AND I have to relearn to trust someone else. This is just incredibly upsetting to me!! I know it may not seem like a big deal, but really, I truly hate that I must start over. If I could skip going to the dentist, I would!!

After reading the letter and realizing what I'd have to go through all over again, it also just made me a bit mad and upset at the reason WHY I had to deal with this in the first place. I wouldn't have to need Medicaid and Medicare if I didn't have PH. I totally wish that I could work, and be able to teach in a classroom without worrying about my health. I wish I didn't have to rely on the government for help. Believe me, I'm not a person who is very happy to be getting food stamps. I'd rather be earning my own money, enough money, to buy my own food without relying on anyone else. All these emotions came up over the fact that I just can't be a NORMAL person and earn a living because my health gets in the way. I hardly ever do that, let myself get down because of this stupid disease. But, I know there isn't anything I can do to change the situation. I just need to start calling around to dental offices in this area and figure out who will take Medicaid and who won't. I am really hoping this isn't starting a trend. If I end up losing any of my doctors because they have decided Medicaid is too much to deal with, I'm really going to lose it then!!

Thursday, May 26, 2011

An Inspiring Story

Last night, I watched a Netflix movie on my laptop. It was a documentary about a woman who adopted 11 special needs children, and a year of their life. The name of it was "My Flesh and Blood." Now when I read the description of what the movie was about, I had no idea the challenges these children faced. I at least thought perhaps there would be a child with Downs, which there was one. But other children included a girl who was severely burned in her crib as a baby; two children diagnosed with epidermolysis bullosa, or EP, an autoimmune type of disease where the skin doesn't have collagen that makes it stay on the body (the best way I can try to describe it), one of who had passed before the filming of the documentary; a child with cystic fibrosis, or CF, who also had severe behavioral issues; 2 Russian girls who were born without legs; and several others. The mother, though, had to be the most loving person I've seen to want to adopt these children by herself. She had had two children of her own with her husband, but shortly after they adopted an Asian child, her husband had left her. At some point, the agency where they adopted the Asian girl called Susan and asked if she'd be interested in adopting another child with special needs. She did, and kept adding children until she got up to 11. I was just in awe of Susan, and the ginormous heart she had for these kids. The documentary was very touching, and also sad, as you saw how the children tried to deal with living challenged lives. I really would recommend this film to anyone. It's just so incredibly touching, and I know for sure that Susan most definitely has been blessed with a very loving spirit!!

A Good Day!

The past couple days I have felt really yucky, and mostly crampy, which makes it very hard to be able to accomplish anything. Tylenol and heating pads helped a little, but I pretty much didn't do anything for those days (except for a doctor's appt on Monday). So today, I was rather relieved when I woke up and felt much better! I had wanted to go to Walmart, but the sun was shining, and it was so nice out, that I decided to stay home and get a couple things done here instead. After doing the dishes, I ventured out into the backyard to do a little gardening. WHAT??? Gardening??? ME??? Ok, it's no secret how much I really do not like anything dealing with dirt, but the past few years, I don't know. Something changed! I don't LOVE gardening, but I don't hate it either. I've been planting flowers or trying to grow tomatoes. I've been somewhat successful at it! The thing is, the ground here stinks, and I can't dig it up anyway. So I've been trying to grow things in large pots. It's really the only option I've got!

Anyway, I've been growing roma tomato plants from seeds since last month, and they still aren't quite big enough to plant yet without probably failing. So what I did today was plant some green onion seeds in one of the planters out back. The dirt was already in there from last year, so I mixed up the soil a bit and put some of the seeds in there. Hopefully something grows!! I'm always worried that nothing will come out of anything I plant. lol

The container that holds the green onion seeds is up against the back of the house, and it's quite obvious that my dad has mowed the grass around it. All up against the house was a bunch of tall grass and weeds. As much as I didn't want to, I started to try pulling it all out. See, this is just mind over matter stuff. I had to tell myself to suck it up and just do it!! lol I was squatting for most of the pulling, and my poor legs were getting tired. I decided to try using old scissors, and that was going ok, but my legs still felt worn out. So I went into the garage for one of my new chairs, and tried pulling and cutting stuff out while sitting. That was also getting my legs tired, and also making it hard to breathe since I was bending over. But, I just kept at it, and just worked a little then rested a little. I eventually got it all done, though, and I was proud of myself!! I had accomplished something I usually hate doing, and it looked so much better, too. It no longer looked like a jungle growing against the house. lol

I eventually took my book out and some water and sat at my table for awhile soaking up the sun. The next few days will rain (boooo), but then we'll be getting warmer weather back! I finally took down the plastic a couple weeks ago around the windows, so I'll be opening them up when I can. I suppose my next job is to switch wardrobes for the summer, since I have yet to do that. I've been taking stuff out to wear here and there, but not everything. I really hate that chore!! Not only that, I could use new clothes!! lol

Tuesday, May 24, 2011


My Netflix account is no longer on hold, since all the shows I love to watch during the regular tv season have all had their finales. So today I got my first movie, Blue Valentine. It had such rave reviews before the Oscars, and was even nominated for a few, but although I liked it, I didn't see what the big deal was. I guess I'm just not movie critic material, I can't see what the reviewers loved so immensely about the film. lol The next movie in my queue is Valentine's Day. I hope that is good! I watched about 25 films, give or take, last summer through Netflix. I'm hoping I can watch that many again this summer before I put my account back on hold for the fall tv season!

Saturday, a few of my friends and I went to see Bridesmaids. I heard so many funny things about the movie, and I did think it was pretty hysterical! The entire theater was in stitches for most of the film. So, I thought it was worth going to see! I know my friends are going to want to see The Hangover 2, but I waited for Pay-Per-View to see that movie, and I'll wait to see the second version that way, too. I didn't love it as much as they did, so I don't want to really waste my money seeing it in the theater. Maybe, if they wanted to wait, I'd see it when it goes to the cheap theater. But, we'll see!

I have two movies I'm looking forward to this summer. The Help is based on a book I read last year (or maybe the year before), and it was a wonderful book! I saw the movie preview on Saturday, and read an article about it today, and already there is Oscar talk for a couple of actresses. The other movie I can't wait for is the final Harry Potter. I'm excited and nervous at the same time. If they aren't totally true to how the book ends, I will be extremely disappointed. Somehow I don't think they will steer clear from the book's ending, but I'll just have to wait and see it to find out how it all comes together!!

Monday, May 16, 2011

Water, Water, Everywhere

This morning I woke up a little late, and as I was trying to get Mittens his breakfast, I heard my upstairs neighbor call me from the basement. So I went to the door, and she told me the basement was flooded. CRAP. I went down my 4 steps to the top of the basement stairs, and she said the water was everywhere. UGH. I went back into my apartment to call my mom and then get dressed, and I headed down there to see how bad it was. Well, it really was a lot worse than the last time it had flooded, which was about 3-4 years ago. The rains we've had in the last few days was part of the problem, but the tree roots in the sewer lines was the biggest reason it backed up. And unfortunately, it'll happen again in another several years. The water was almost 2 inches deep in some areas, and there were a few spots where the water didn't reach (thankfully, my Christmas tree was one of those areas!). I'm glad that all of my Christmas decorations were on a big table in boxes, so none of that got wet or ruined. The only kind of big loss (maybe) are my high school and college yearbooks. They were definitely wet. I've had them standing up on the floor in the computer room all day with a fan going on them. I checked earlier. They are half drying out, and half still wet. I'm not too sure what to do about it yet, but I'll check them again tomorrow.

My upstairs neighbor was not that lucky. She has the big room down there that my mom let her use for storage when she moved in a couple years ago. Well, all her stuff is all over down there, and much of it is wet. She removed about 3 bags of stuff, but I don't know if it even made a dent in the room. I've asked her a couple times if she wanted some help getting rid of stuff, but a part of me thinks that this is going to be an ongoing battle for her to hurry up and throw things away. I just don't want it to start growing mildew or mold or anything. That would smell terrible, and it would be awful for my lungs. I sure hope my mom says something to her about getting it cleaned up asap. Or else it just might not happen.

Both of my parents used the shop vacuum to suck up much of the water after the plumber came and unclogged everything. What I did end up losing was a bunch of empty cardboard boxes that I would save after buying things, like my TV box, a computer box, toaster box, vacuum box, etc, etc. Ummmm, did I REALLY need to be saving all of them?? Nooooooo. So now, my area is actually pretty clean! lol I do have some more things to go through, but at least the majority is all done. Tomorrow is another day to see what else I might be able to throw out!

I do have to say that after dealing with this problem, I realize that in no way does it compare to what is happening down south in in Mississippi and other areas effected by the flooding down there. The amount of water I had in the basement is just nothing compared to what they have. Entire houses are gone. It's incredibly sad. So I count my lucky stars that I did not have to go through what they are trying to cope with, and I pray for them that they are able to rebuild when all the water has receded.

Sunday, May 15, 2011

Update On My Health

This time last Sunday, my parents and I were almost in the Cleveland, OH area for my scheduled appointments the next day. I have been meaning to write about it since we got home last Monday, but every time I finally think about it, I've turned off the laptop for the day! So, here we go!

My echo appt was first, and since I was the only one waiting to have it done in that particular area of the hospital, I was called almost right away. The tech did a good job, and I was done in about half an hour. I had so much time left before my next appt, that I went up to the 7th floor to visit a phriend who'd been in the hospital for almost a month. Merle had had heart surgery, and the recovery process was taking a lot longer than she had thought. I brought her a card, and 4 sheets of paper with messages from phriends on Facebook! She wasn't able to read it right then, but later she texted to say how much it meant to her. I was happy to at least give her a little smile.

The next appt was in the cardiology department. I had to see the fellow, and then my adult congenital cardiologist. I really really like him, but unfortunately, the wait time to see him can sometimes be ridiculously long. This time around, it was 2 1/2 hours before he saw us! My parents were really not all that happy about it, but Dr. K explained that the patient before me had to be admitted into the hospital because he wasn't doing well. I guess that takes a lot of time. Anyway, he ended up spending about 40 minutes with us, answering questions and explaining things. He even asked me if he'd shown us my echo before, and when I said no, he pulled it up on the computer. My mom has never ever seen any of my echoes before, and I've been getting them done for 35 years!! So, I'm glad he spent that time with us in going over things!

Just a brief description before I go on with some of the things I heard: I have congenital heart disease (what I have is called atrioventricular canal, or AV Canal, and it's basically 2 holes in my heart), plus pulmonary hypertension. This combination is known as Eisenmenger syndrome. Many people living with Eisenmenger's normally have low oxygen levels. Our bodies adjust for this, and compensates for the low o2. And even though I am on o2, my saturation numbers don't really get any better.

Anyway, the reason I brought up the previous paragraph was because Dr. K made a comment during the appt that there is nothing that shows Eisenmenger patients benefit from using oxygen. I kinda just stared at him when he said that. But he explained to me that no matter how much o2 an Eisenmenger person is on, whether 2L, 4L, 15L, on oxygen tent, that it doesn't do anything to make the o2 sats get into the normal range. It has to do with the shunting in the heart and the way the oxygen is carried. And as a phriend of my explained it later, it's like trying to blow up a balloon with a pinhole at the end of it. The oxygen just doesn't stay in our bodies like it should. If that is the case, why was I ever put on it 10 years ago? Well, I'm not sure if anyone fully understood what I had when I started going to Cleveland Clinic, and my o2 sats are really very low, so the doctor I saw back then just thought I could seriously use the extra o2! Anyway, Dr. K wasn't telling me to just call up my o2 company and tell them to come get everything, and I wouldn't use o2 ever again. Honestly, as much a I would LOVE to see that happen, I can't imagine going without it. I definitely will keep wearing it while exercising, so my heart won't strain and enlarge. But if I just want to take a break from it while hanging out at home, I will. And I have been. Actually, I used to do it often, but now it's nice to know that I'm not really defying doctor's orders by taking it off for a bit. lol

Another thing Dr. K mentioned was that Eisenmenger patients often do not need a transplant. This doesn't mean they can't have one if it comes down to that. I have a friend who was an Eisenmenger person, and I met her after she'd had a transplant. I do hope that I will never need to go down the transplant road, but if I have to, I will. It's just nice knowing that I may never need to because of my specific condition. And thankfully, I can increase Revatio if I need to, and also try one of two inhaler meds if my situation starts to decline. Luckily, none of that is a concern right now!

After our appt with Dr. K, we were already late for my appts with the pulmonology department, so we ate some lunch before heading over to that building. Shortly after checking in, I was called by the tech to do my 6 minute walk, and to have a flight simulation test to see if I can tolerate being in a plane. I ran into my PH doctor in the hallway, and he asked me where I was going on vacation. What vacation?? He said since I wanted the flight test, that I must be going somewhere. lol I can't really afford going anywhere right now, but at least it would be good to know if I can ever take a flight somewhere!

My 6 minute walk was a bit lower than the one I did last year, but I finished the walk this time around, instead of being stopped 30 seconds before the end like last year because my o2 dipped below 60. I was put on 15L of o2 again, like last year. I purposely paced myself this time, and I think it's the reason for the drop in feet (or meters, depending on what results you see). The good thing was my legs weren't killing me or felt like lead while I was walking. I did feel as if I was more short of breath than usual, even though I did use pursed lip breathing. But considering I don't really pay attention to the results of the test anyway, and neither does my PH doc, it didn't matter to me. lol I told him before, those 6 minutes do NOT indicate how I feel the entire year it's been since I've seen him last!

The flight simulation test was next, and after the tech and Dr. G finally figured out how to do it based on my condition, she set me up on a cushy blue chair in the room, and put me on 5L of oxygen. Then she put a mask over on my face that had oxygen that was as if I was 1500ft in the air. I had to sit there for about 20 minutes to see if I dipped drastically below the 80 oxygen sats I started out with. I moved around a lot on the chair, and talked much of the time to the tech since I know I wouldn't sit like a stone in an airplane, and the lowest my o2 went was 79. So when I arrived at my destination 20 minutes later, Dr. G said that I could fly as long as I was on 5L of o2! Yay!

Dr G came into the room and sat down with me, and we chatted about what Dr K said regarding the oxygen use in Eisenmenger patients, how I've been feeling, med changes, and flying. It didn't feel like your normal appt! lol He did agree with Dr K about the oxygen, but said it's up to me if I want to see how I feel not using it. I asked him if I could add him on Facebook, since I heard him in the hallway say he had a page, and he said sure! And that was about it! I don't see him until next May again, unless something drastic changes throughout the year. So I went back out to the waiting room, and told my parents I was all finished. Dr G did see us getting ready to leave, so he came over to say hi to my parents. Then the only thing I had left to do was get my bloodwork done, and we were off back to Niagara Falls!

Since being home, I have been taking the oxygen off for a few hours at a time, but quite honestly, I can't seem to wrap my head around trying to go longer without it. I think it's more of a mental problem than an actual need! I'm still leaving the house wearing it. I haven't tried just putting the o2 in my car and seeing what happens if I'm in a store for a bit without it. So, I don't know. The news that I can try not using it if I want was exciting at first, but I think it would be a mental battle of epic proportions to actually wean myself down. lol I am just happy that my health is stable right now, and I pray every day it continues!!

Sunday, May 08, 2011


I need to get to bed, but I thought I'd update briefly on what's been going on around here!

Thursday: Went to rehab, met another cute guy working there. He is a body builder. He showed me pics. Oh dear, help me.

After rehab, I went to Rite Aid to pick up some meds. Walking out of the store and back to my car (which was just several steps away), I watched an old woman hit the back of my car as she was trying to park in the spot next to mine. If I had not seen it, if she didn't see me standing right there watching, I would bet you anything she would've just went into the store and not said anything. As it was, I had to tell her there was damage, and that I wanted her insurance info. She never even apologized. My car has almost $380 (estimated by my insurance guy) in damage, just a bumper replacement since it was paint that was scratched off. I'm making her insurance pay for it. Only because she didn't even give a crap that she hit the car. Makes me wonder if she's hit anyone else's car before!

Friday: I cleaned and got stuff that needed to be done around the house while dealing with a tummy ache. Not fun, but by evening, I was ok.

Saturday: I had a PH support group meeting today. I had considered cancelling it because I knew it was going to be a very small group, but one of the people coming had never been to a group meeting before and he had told me he had questions. It was a wonderful meeting! There was a total of 8 of us, 4 of us PHers, and we actually went over the scheduled meeting time. The guy who came thanked me at least 10 times for having the meetings, and promised he'd be back for the next one. That made me realize that the questions I had several weeks ago about about whether or not I was doing what I am supposed to in life were just stupid. Every time I hear someone thank me for the help I provide in the PH community, whether online or in person, I know that God has steered me in the right direction!

Sunday: Well, Sunday is only a half an hour old right now, but in many hours, my parents and I will be on the road to Cleveland for my annual checkups. I love saying annual. It's nice not to need to go there more than once a year! I am hoping to visit a dear phriend who had surgery there several weeks ago while I'm there. I had a good idea this morning to kinda do a "virtual card" for her. I posted on Facebook for phriends to comment on my status if they'd like to send M. a greeting. I'm going to print out all of the comments (which total almost 50 right now!) for M. to read, and put them in a Get Well card I bought. I hope that it perks her up a bit! And on that note, I better get to bed!

Wednesday, May 04, 2011

Lazy Or Blah?

In the last few days, I haven't wanted to do much of anything. I figured Sunday was a given since I'd had a long and emotional weekend, so I let myself do nothing. But Monday and today felt just as uninspiring. The only good thing I did was finally get the dishes washed on Monday while on the phone with Mandy. I blame the weather mostly for the lack of energy. It's been colder than normal, and I think the sun went on strike. The rain has made things so damp that I've reluctantly put the heat back on. Tomorrow is another day of wetness, but I've been mentally preparing myself to tackle the laundry list of things I need to do (including the laundry!). I'm crossing my fingers that I can do it!

Monday, May 02, 2011

Victory At Last

As I sat and watched Brothers & Sisters tonight, I got highly irritated that breaking news interrupted the last 10 minutes of the show. Until I found out why. Osama Bin Laden had been killed, and his body recovered from the special operation unit that carried out the attack. Oh. My.God. I gasped at the news, and then I spent the next almost hour awaiting the President's address to the nation. The operation that finally led to Bin Laden's demise started eight months ago in August 2010, and today, after months of observations and plannings, President Obama gave permission to attack the complex Bin Laden was hiding in. The brief operation led to his death, and none of our soldiers were harmed. I am just in awe of the brave soldiers who led this mission, and the successful outcome that occurred.

While this is wonderful news for our country and the world, and especially to the families and friends who lost loved ones on 9/11, this by no means will end terrorism. This will not put a sudden hault on the wars in Iraq and Afghanistan. It doesn't mean we wrap things up and bring all the troops home this instant. Bin Laden's death was a huge triumph in the war against terror, but it certainly doesn't mean that we are now free from any future attacks. Our men and women in uniform are still needed to keep our country protected from those who are hellbent on doing us harm. Right now, though, I'd like to give a big shout out to those who are in the Armed Forces and doing everything in their power to keep our country safe. Thank you for your service!!

Sunday, May 01, 2011

Saying Goodbye

This weekend was mostly spent helping my friend say goodbye to her brother. The wake was 4 hours on Friday evening, and the funeral was Saturday morning. My other best friend and I went together to both. It was hard mostly seeing Eve's father looking so lost. He is 75, and told me that should be him gone, and not his son. The funeral was nice, and Eve's eulogy to her her brother was just beautiful. There was a nice luncheon in the reception hall afterward, too. I was glad to be there for her and her family, and I'll continue to pray for comfort and strength for them all in the days and months ahead.

Food, Glorious Food

Does it look to you like Mittens is starving to death? No? Yeah, well, he sure acts like I never feed him! He's been on my nerves lately with how much he wolfs down all his food for the day and then wants even more. I've been good refusing his requests until I go to bed, and then I give him maybe a small handful more. I keep having to tell myself that he certainly won't starve to death overnight! And of course, he greets me with meows the next morning that I know have more to do with feeding him breakfast than saying hello. lol