Update Continued

I went to my lung doctor the day after the last post. She sent me for a different x ray and they found that there is fluid in/around my right lung. I am already on very strong diuretics. She wants to wait two weeks to see if it will reduce or clear up. If it is the same or larger they will consider whether or not to remove the fluid. Since I am on blood thinner this is a big deal, I can't have it done unless I go off of it which puts me at risk of a blood clot. They have to weigh the pros and cons. Also, my oxygen level was low and she wants me on oxygen 24/7 for the time being. This means filling the portable when I go out and taking it along.

We had a weekend with my mother-in-law and niece. They had a difficult time getting here as a wrong turn was made, throwing them off kilter. It ended up adding about two hours to their trip. I finally went and met them when they got close. We had a nice cookout Friday night and then we took them over to their hotel. They wanted to stay at the Residence Inn which had an indoor pool and a fridge and microwave. On Saturday we went and got them. They came here then we went to the cemetery so they could see my family plot. After that we went to Target and bought our niece a bathing suit (she had forgotten hers.) We went out for a nice lunch and then took a cake over and visiting my mother for awhile. Back to the hotel for swim hour then back here again for dinner which Rob prepared which was delicious. After dinner our good friends came over for a quick visit and we once more took them back to the hotel. They will come by for a visit tomorrow morning and head home. I was relieved that today was beautiful, although rain had been predicted. I hope they have good weather for their trip back.

Quick Update

I went to Philly today to see my PH specialist team. I have gained (gulp) ten pounds of fluid this month. Yes, they can tell by my swollen ankles, legs and belly that it is fluid not actual weight gain. They hear something in my right lung. Tomorrow I go to the lung doctor so she can figure out what is in there. Fluid? Residual pneumonia? I would imagine I will be sent for an x ray if not a CT scan in the next week or so. Those require approval unless done in the ER. I had to use my portable oxygen to get from the car to the office because whatever is in there has me short of breath.

My mother-in-law and niece will be here Friday. I went out and got snacks that a 13 year old would want and special treats that MIL likes as well as a nice hanging basket for her to take home with her. I also got some for my backyard which is shaping up nicely. Have some pots planted and things are blooming. It's looking like Spring. I got Mr. Duffy McSheltie groomed and he looks lovely. He loves his groomer Jamie. I was so bad that day I had to pay a neighbor to drive us to the groomer and help me with him. Rob was able to pick him up. This lady loves him and we have her care for him if we go anywhere. She doesn't like to make money but we insist and as a senior I know she enjoys having the extra money.

Will update after the lung doctor. Hoping it is not the pneumonia because I was diagnosed with it about a month ago. I've already had two rounds of antibiotics for it.

If it's still there that could mean IV antibiotics which means another PICC line. I've already had four in the past three years. I feel my quota has been reached.

The Value of Comments

Dearest Readers:

A comment that was posted that really made me think. I am so grateful that some of you take time to comment. (I read many entries that I don't leave a comment OR the captcha is so difficult I try to leave one, get frustrated and give up.) But I digress, I would like to apologize to you. The comment made me realize that often when I am down and feel I need some support, I turn to this blog and you to give it to me. I have failed to share the joy that I often feel. It's like having a friend you complain to but never share your good times with. Unfair to that person. I promise I will try to give you more of the good times. In order to truly know someone you need to see both sides.

Just this morning I got up early with Rob. It''s nice to see him before he leaves for his long day. I was coloring my gray and he was being silly and we were both being amused by our cat who kept trying to pretend he had not been fed yet. We were being silly, all three of us.

Have I ever told you that the first thought I have when I open my eyes in the morning is "Aha, thank you God that I am alive today to live this day!"? Every time I get mail from my mailbox and there is snail mail I am delighted. Like yesterday when one of my blogging friends Mary sent me an Easter card that had a long message in it. I love you, Mary. All those cards are like gifts of your spirit. Have I mentioned that I keep my handpainted card by Judith HeartSong in a special place just to look at it and think of what great friends, supporters her and Virginia have been?

Yesterday afternoon one of my neighbor's dropped in just to bring me a few things that she didn't want and have a chat with me. I have three neighbors who do that, just find a reason to stop by and visit for awhile. I love that. In my old neighborhood I lived in ten years ago that just didn't happen. On Sunday my neighbor's 17 year old daughter came over just to see me and bring me a little something she thought I'd like. All of those things bring me great joy. What really made me joyous today has already happened. I watched Rob practically skip down the driveway to his new car (which men like to call a truck). Technically it's a crossover, car that looks like an SUV which is usually technically a truck. Then he got in and I saw a smile that lit up my heart. I watched him drive off and I thought how grateful I am that I got to see him get his first new car and enjoy it so. I'm one of those people who is much happier in the giving than the receiving, magnified when it is for someone I love. Life is beyond good. On Sunday we learned that Rob's mother is going to bring his niece and come for a visit. It's been four years since I have seen her and three since Rob has. We have missed her terribly and she is as excited as we are. The picture above is Cassie with her Mom, Rob's baby sister Jennifer who died nearly five years ago. We loved her dearly and being with her daughter is like having a part of her.

While I have all the good, the knowledge of my physical issues is always there. I don't know how much time I have left, no one does. There are days where my mind wants one thing and my body just can't do it. Those days are rough but please know that I get through them, determined to have a good day another day. Most importantly, please know that I have great joy. I am on the edge of glory at times knowing that I was here, I loved and I am loved. Even when my body is gone, those who knew me by heart will keep me with them. Knowing that gives me joy.

On and On

Friday night I began to run a low grade fever again. I called the lung doctor and spoke to the covering doctor explaining all that was happening. She called a script in for me and I got the first dose that night. I felt so so Saturday and on Sunday I was really not well. I did manage to prepare two quiches and two desserts. My son who is a vegan came with his own pasta dish he prepared as well as some egg free bagels that he made vegetable sandwiches on. He is creative and his food is good although some of it I cannot have because of the high sodium content. I also made a delicious fresh fruit salad. My mother arrived just as the food was coming out of the oven. We sat down and she began one of her crying episodes. She had misplaced her car keys and gotten completely overwhelmed when in fact they were still in her purse. My son tried to explain to her that as people age their memories are not as sharp and it was nothing abnormal. I suspect she wanted sympathy and then she finally gave up and we began our lunch. When we were done she immediately wanted to sit on the sofa and announced that she wanted to sleep. Finally when she realized it wasn't going to be quiet as we were all cleaning up the kitchen, she decided to go home where it was quiet so she could sleep. It was very disappointing to spend an hour and a half of prep time and have someone show up to eat and then leave right afterward. I realized that my temp was going up at this point and Rob insisted that I rest while he finish cleaning the kitchen. When he got done he stretched out in the recliner and fell asleep. I wish I could have slept.

This morning I went back to the ENT. He thought my nose looked healed but when he touched my right nostril it began to bleed. He decided it had to be cuaterized again. This really hurt. It has been six weeks since I have been able to blow my nose or sneeze normally. It will be three more weeks at least. It's so frustrating. I came home and just took it easy until Rob got home. We had to go to the grocery store. The kitty needed food and there were other things needed as well. Got that done, it is so much easier when Rob is with me. Of course we forgot the handicapped placard so he had to drop me off and then go find a spot. It is supposed to rain tomorrow and I am under orders to call the lung doctors and go in if I don't feel well or if the fever persists. I really don't want to deal with this again.

Hope you have a good week.

Happy Holiday

I want to wish everyone a good weekend. For my Jewish friends Happy Passover. For my Christian friends Happy Easter. For my friends who celebrate neither Happy Spring.

I have gotten several pounds of fluid off of me finally and am feeling somewhat better. I am still not sleeping well with early wakening so I still feel tired but I had a great day yesterday.

We are not having a big celebration this year. I am just making a few quiches with fresh fruit salad for brunch. Last year's huge preparation and clean up was too much for me and Rob ended up doing most of it. Neither of us need that again.
It will be more of a day of rest for us. Hope it is a day of whatever you are hoping for.

Rocking On

Dearest Friends,

I am giddy. Yes, giddy. When I first met Rob it was kind of shocking to me that someone in their thirties had never owned a new car. His siblings had. This guy had worked two jobs at times. I knew that somewhere up the road, a new car was in his future. When I got my last job and we had two incomes one day we went shopping to get him a new car. He spotted the car I now have and insisted that I buy that for myself and he would take over my old car. That was six years ago and the old car is a 1999, that means it's 13 years old. While it was a nice car when we bought it back in 2002, it now had over 100k on it and was getting a bit rickety. It has been in good working order but we just had to put a new catalytic converter in it. When my father passed away my Mom split up his insurance money amongst us. It wasn't a lot but combined with what we were given of my grandmother's estate it made a nice downpayment. My younger brother was a Godsend as he just bought a Nissan Rouge for himself and had done all the research and knew what Rob liked. We had previously bought his old truck for Rob. He negotiated a phenomenal deal with the salesman as he set up deals for his mother-in-law, himself, my sister and then us. It was the end of the month too where dealerships have added incentives which buyers can take advantage of. I took Rob in to have him test drive it and he was in love. You know that look when you see it. He also mouthed "I LOVE this car."

Over the summer as I lay in ICU and Rob slept in the recliner next to me I thought of wanting to see Rob have a new car. When I prayed I asked God to let me live to see it. Last night that prayer was answered. They had a banner hanging in the car that had his name on it. It was so sweet that I admit it, I cried. Tears of joy. My joy is greater in giving than in receiving. The past three years have been like a tsunami for us. Our wedding song was "Come Rain or Come Shine". Little did we know what we would face. Throughout it all Rob ha been with me every step of the way. He has given up every vacation day to get me to Philly for doctor visits. He alone has seen me at my worst and shared my deepest fears. I could never repay him, nor would he expect that. What I can do is show him what he means to me. Last night was my chance and I seized it.

It was incredible. #2 on my bucket list is a trip to Ireland. I need a rest first though.

Life is good and sweet and full of moments that make the fight worthwhile.

The Day Before Friday

Even though I know longer work, I love Fridays. Why? Because that means Rob will be home for two days (providing he isn't working Saturdays which he does every time they offer it.) After knowing Rob for twelve years I still enjoy his company. He never complains and always has a positive attitude. I am more of a realist and sometimes I need someone to point out the good a second time after I have evaluated the situation with both good and bad. Rob keeps me wanting to fight. At times I am tired of the fight. Remember that my first cancer was over thirty years ago. Since then I have had a few years where things went smoothly but it's been a battle of one sort or another. Honestly, this battle with the PAH and the fluid retention has been one of the most difficult things I have had to deal with. At this time last year I was in dire straights. It took about until May to realize that I had what would end up being 4 litres of fluid (about a gallon) in my chest. That was removed twice. Since then, I have battled with the fluid. When I have the fluid it interferes with the PH medicine working. I eat almost no salt but the problem persists because your heart is a pump and mine is not working properly. Most people who have heart issues have them either in the right or left side. Both sides of my heart have problems. It makes treating anything more complicated.

I want to get a box mailed off today to Rob's sister and her two young sons. We hadn't sent them anything for Christmas and since their birthdays are here I decided to send an Easter/birthday box. I think that will mean more to them than getting something at Christmas when they have so much then. Not many people acknowledge their birthdays as they live in the south away from her family.

Yesterday's mail brought many smiles to my face. My mother-in-law sent us a lovely card and money to go out to dinner for Easter. My friend, Dee, sent me a book and card and I received a card to test drive a Toyota and get a $50 prepaid credit card. I'll take it! That will give me a tank of gas. My friend and fellow blogger Mary has been sending me snail mail cards that brighten my days. Although I love email there is something about holding a tangible card in your hand that feels more personal. I miss that.

I am working on a fund raising project for the Pulmonary Hyptertension Association. It's a "no show tea." I have made a simple invitation which gets mailed to invitees with a tea bag. I sent an invitation to one friend who has already responded with a donation in my honor. I am doing this for Mother's Day to honor the mothers who have this disease. I learned, through my online chat, that some women develop this during their pregnancy. Once they have it they are not supposed to have more children since their life expectancy is lowered and it would take a toll on their health. Imagine having an infant and being told you have only two to three years to live. I want to try to raise public awareness about this disease which only one in a million people get. There are many doctors who feel that more people have it but because of the common symptoms (shortness of breath, fatigue) it is undiagnosed. Often it is secondary to another disease such as heart or autoimmune disease. IF you would like to receive an invitation to the Mother's Day Tea please email me your snail addy by using the email link on this page. I will be happy to send you an invitation. I know we are in economic hard times and for many this is not something you can consider. For any who can and choose to participate, thank you.

Have a great weekend.

Slide Show

decided to play around with SmileBox and this is something I quickly did. I weigh 50 plus pounds less than I did in these photos!

Another digital slideshow by Smilebox

Being Understood

I have been chatting online in chat rooms and attended a webinar and made a PHriend who really knows what I am going through. We talked on Friday and I felt better. I am having great difficulty sleeping. I can't turn my brain off. My friend explained the first few years were the worst for her. Now she has meds that have been working for her. She thinks it is probably for the best if they change my medicine and the proposed medicine is one that has worked well for her.

I realize how much I lost when I lost my job. I was focused on the financial impact only the first several months. Now I realize that I lost many of my friends and my social life for the most part. I really miss some of my coworkers. They try to stay in touch. I still get emails and texts. It's just not the same.

I am trying to think about yardwork for the spring. I can't do much physical work anymore. I can get help from my son with planting and digging. He was here yesterday tuning up the lawn mower. I am hoping it will be a good distraction. We shall see.

Spring has Sprung

It was gorgeous here today and yesterday. I am really lightheaded yet toying with the idea of poking around in my flower garden. I have some new stuff to plant.

I took my diuretics (the super duper Z pill) and in the last two days six pounds of fluid has come off. YEAH!!!! I take it again today and Sunday. With the fluid off the adcirca has a chance to work.

I had a sort of an arguement with my mother. My little brother goes crying to her that I hate him (come on dude grow the hell up) because I told him I would not bother him again when he didn't want to help me on Sunday. I cannot stand the disappointment of having people tell me they are going to be there for me etc. and then when I call them for help they don't answer the phone or ignore the text or whatever. I need people who can lift me up not pull me down. Sorry but that's the bottom line. I am not doing well physically which has an impact on my emotional being. Either help me or get out of the way. Don't just stand there offering to and then leave me hanging. I wouldn't do that to others and I won't have it done to me.

On a good note I went out yesterday and had breakfast with a friend. It was SO ENJOYABLE. Most of my "friends" never call and specifically ask me to do anything anymore. Well, this morning my neighbor called and asked if I wanted to take a walk. Considering I am really short of breath that was not good timing and I had to say no. Still, I appreciated her thinking of me.

Ok, the dirt is calling me and the promise of having beautiful flowers. Enough so that I can cut some and bring them in the house to cheer me. I changed my header. These are actual pictures of plants that I planted here from my grandmother's flower garden in Maryland. Oh how I miss her. How I miss her kind words and loving gestures. The one thing about leaving here is knowing I will once again be with her. I still feel her love for me though she is gone. I still feel her influence on my life and thoughts. I knew her by heart.

Exhausted and Struggling

I had very little sleep last night and had to be at a radiology facility at 8 a.m. so this will be brief before I take a nap. I went to Philly on Tuesday. It was a lovely day and smooth travel. That's the good part. When we arrived we sat for nearly an hour before being called to the nurse's station. Once there a nurse was being chastised for letting me wait that long when I was the first patient to be seen. (NOT by my PH specialist.) Finally they got my stats and began my six minute walk. I was breathing so hard at one point I had to stop and start a few minutes later. I did worse than I did back in December. I got inside and gave all the information to the "fellow", had an EKG then repeated for the nurse practioner. The PH doc finally came in and looked very deep in thought. He began to say that I was slightly worse, certainly no better. I wanted to cry. I explained I had just gotten over the pneumonia but then he asked if I had been better prior to getting it. Honestly, little, if any. He doesn't think the medicine is working. There are a few possiblilities why not. One is that my body is just not responding. Second is that I might have fluid on me. Fluid will stop the medicine from being absorbed. (To check if this is the cause he gave me a very strong RX to take three times this week to see if fluid comes off.) Thirdly, because my PAH is secondary to my heart disease it may not respond AT ALL. It felt like the floor was unsteady under me. I ask him a few questions and he is deep in thought. I almost thought he was ready to throw in the towel. Then he said "We fight. That's what we're all about. We'll keep fighting." That's all I can say right now. I have severe PAH. From what I have read one usually has two years from their diagnosis to live. I was unofficially diagnosed this time a year ago. I need something to work. If not the prognosis is not good.

Rob had a stoic face and we went to the lab. We had dinner, came home and I only made one call to my aunt. She shows more caring that my mother or siblings do. I had told Rob's Mom I had pneumonia over two weeks ago and she got me an email. I feel so alone, except for Rob and my son Tom. I have to lay down and will write again soon. I am drained.

Sleepless in Robtopia

It's 2:30 in the morning and I should be sleeping. I don't think the iced tea I had with dinner was decaf, although I thought it was. I am going to be one tired girl tomorrow when the phone rings at 9 a.m. and the guy tells me when he'll be here to fill my oxygen tank. I'm down to two lights so I need a refill. This past week I was on it 24/7 so used much more.

I am happy to report that I saw Dr. F again on Tuesday. They called me Monday evening to let me know that I had pneumonia and it was in two lobes of my right lung. They wanted to see me again. Dr. F remarked my coloring was much better. My fever was also gone and my lungs sounded better. He is keeping me on the Avelox a few days more though and told me I wouldn't feel completely well for several more weeks. This morning when I woke up I noticed that I did feel better though. Last week was really bad. I actually was able to go to the grocery store and pick up some things.

The weather was gorgeous today. 72 degrees and sunny. I was sad not to be able to take my laptop out to the patio but my patio table was destroyed in the last bad windstorm. I have not been able to find another that is within my budget except for a tiny one that was not at all what I need. The doctor bills are rolling in every few days and over the next month I will be paying a lot for those. I am so grateful that in this economy Rob has a job. He will be working overtime on Saturday. I hate when he works on the weekend as I feel he deserves and needs two consecutive days off but he insists he doesn't mind. We are used to two incomes and over the past year the most income I have been able to have with disability is 60% of what I made. That is taxable income I believe. I still have yet to have my taxes done. I did get the paperwork together though.

Have I mentioned that I can no longer sing? Actually it's been quite awhile. When I went to the ENT I was so hopeful it was something simple. I found out that it's my lungs and I will never really sing again. I can make these attempts but it's not pretty. My voice cracks and I cannot sustain a note. I never had a great voice but I enjoyed singing along. I just purchased the Adele 21 cd which I have enjoyed so much. Now the singing must take place inside my head. It's difficult to get used to.

One of my high school friends called me the other day. She has ovarian cancer, stage 3. She was so overwhelmed and told me she had no clue what it was like to be in such a predicament. I listened while she expressed a lot of feelings. I told her that what she was thinking was normal under these circumstances. It occurred to me that sometimes just listening to someone is such a help to them. She lives in California, so very far away. I wish I could drive to her home and just hug her and cry with her. We all need people and to feel that someone understands and cares. No matter how tough we are. I am grateful that we have Facebook and emails and we can communicate almost instantly with someone so far away. I can call her but she has a cell phone with limited minutes instead of a home phone so I have to be mindful of that. At times like this I wish I were wealthy and could shower her with flowers and reminders that someone cares. Cards will have to do.

Pneumonia Again

I am a bit down tonight. (Good think Judith Heartsong's radio interview was on and it lifted my spirits. She is the artist who painted the lovely sunflower painting displayed on my page.) The doctor had me go for a chest x ray on Friday I think. He called tonight and said I have another pneumonia. It had been a year and I was ever so hopeful that after the new surgery I was home free. Not quite. This pneumonia is in my right lung which seems to be the weaker and it is in two lobes. He wants me back in his office tomorrow. I am hoping and praying I don't end up back in the hospital, or with a picc line. I already have things purchased for our St. Patrick's Day meal. In all honesty I have felt really bad for the past ten days or so. I am supposed to be on oxygen 24/7 and I can't tell you how inconvenient that is. Yet if I take it off I have so short of breath and dizzy at times that it's worth the inconvenience. I looked in the mirror and thought "I look awful." My coloring is off and my eyes look odd. Daylight bothers them right now. I will see the doctor tomorrow and see what he says. He might prescribe another antibiotic but I think at this point most pills don't work for me. The big gun is vancomyacin which can only be given IV I believe.
Going to sign off and go to bed. I am sleeping at least ten hours a night which is not normal for me. Usually eight is a lot. If you notice I'm not online for a few days then I may be inpatient. It's really bizarre when the nurses remember you. I was just there last May and June. If I could get frequent flyer miles I could take a nice trip.

Blogging

I first began blogging back in 2005 I think. My memory is not what it used to be since my fluid crisis of 2011 and another heart surgery. I try not to stress over it. The reason I began my original blog (which was on AOL Journals) was that I felt more people needed to know there were cancer survivors. At that time I had survived Hodgkins disease for about 30 years and wanted others to know that there were long term survivors. I soon learned that the radiation which had saved me had also done damage to my heart and I blogged about my first heart surgery when I received a mechanical aortic valve. Later I decided I wanted a more personal blog where I could journal about life in general and created Copious Chatter on AOL. Shortly thereafter AOL began allowing ads on our blogs and there was a mass exodus to other websites one could blog out. My blogging mentor Jennifer told me she was coming to blogger and I followed her. She was so wonderful always giving me tips on how to do things in my blog. It was hard to leave AOL because they had also highlighted my second blog and made it their #1 pick. Still, it was ridiculous to journal about something serious when there were banners on top of what your journal.

When I came to blogger I kept my journal a mix of the health issues and personal. When I was recently diagnosed with PAH I started a second journal as well. That one deals only with the disease and not all the other personal aspects of my life. Two nights ago I attended a Webinar about blogging and now I wonder if I actually need two. It's just that someone who doesn't know you might want to learn only about the disease and I don't have a way to sort the different posts. They might find the other details of my life boring. Most of my regular readers have been with me awhile. Many are not registered and can't post comments except for anonymously but send me emails if they want to share something about a posting.

I blog now because it's an outlet for me. It's also a way of keeping people I care about informed of what is going on. To quote Sally Field upon winning her second Oscar in 1985 "you like me". It's a wonderful feeling to know that others care about us, even in the virtual sense. Most of you who read my blog have your own and I read them as well. Each blog brings something else to my life. I am thrilled when my friend Ronni gets a good report. I love to see what Judith has going on in her studio. I could go on and on about what I love of each of the blogs I read. I hope people can go away from reading something I have written and find something meaningful to them in it. It also occurs to me that when I am no longer here to post, you might remember me. I have let you see the polished and the unpolished versions. I have shared hurts and disappointments but I have also shared joy and victory. I have let you in and shared my thoughts. I think that is what blogging is all about.

Random Thoughts

I am actually in my bed on the laptop. I am freezing despite the fact that the heat is about 72. I have been laying here thinking (unable to fall back asleep) that my life could have inspired a Dickens novel. He had a little Nell in one of his novels. What about a follow up, years later she has a baby and three years later has cancer. She survives that but ends up widowed. (Don't think anyone other than royalty could have divorced back then.) She finds love again only to learn that she has a fatal lung disease. Somewhere in there would be the chapter where she is sick and has so many specialists she doesn't know which to call. She is so frustrated that she almost never goes out anymore that she begins to think she is Miss Haversham. I can almost picture the book jacket: Victorian style dress and bonnet but wearing an oxygen cannular. On her dress is embroidered a scarlet letter, an elegant script with the letter N. I think this could be a best seller, at least get Oprah's endorsement.

I saw my lung doctor two days ago. Actually, the one I am so attached to, Dr. G wasn't available to see me that day as it's one of the days she's not in the office so I saw her associate, Dr. F. This guy was damn cute for a doctor. If you watch the new Hawaii Five O he's like Danny but actually nicer looking. When they took my oxygen level it was low....low like you need to be on it 24/7 which I now am again. At least for the next few weeks. I have a cough and a lowgrade fever and chills. My lungs felt very tight. They did an xray at the radiology place but haven't heard anything, which I assume is good news. Bad news travels fast. He prescribed the drugs they give me for pneumonia and my lungs sounded okay but he thinks I might have a bad bronchitis which can easily turn into the dreaded p for me.
I have been babying myself all week. Not doing much of anything. It's not hard to take to a chair or your bed when you are sporting a 90 foot oxygen hose. This hose is long enough for me to come upstairs in my bedroom with. I shouldn't complain because oxygen makes me feel so much better. It's just that right now I still feel cold and sick.
Rob is working late all week. My mother has somewhat redeemed herself having come over here the one day and she took me to the lung doctor the other day. She also went out and picked us up salads for lunch one day. Honestly eating is the last thing on my mind right now but I have to eat something or the meds give me nausea. Folks, when I have a strawberry cheesecake sitting in my fridge and I feel like it's too much trouble to get a piece, I am sick. My mother called and said she will bring lunch if I tell her what I want. There's really nothing that even sounds good to me right now. Well, going to go downstairs and grab a hot cup of tea.

Happy Leap Year

Today, Leap year day is national rare disease day. As the lucky person who has pulmonary arterial hypertension I wanted to mention this. Only one in a million people get it which keeps the costs of the nine drugs used to treat it very high. It's called an "orphan disease." What it actually is was explained so well by my friend Julie that I used her explanation on my FB page to describe it. It's basically a problem between your heart and lungs. " This was Julie's post which she agreed I could share:
February 29, 2012 is National Rare Disease Day ... I have Pulmonary Arterial Hypertension, better known as PAH, or PH for short. What it is essentially, is a constant dangerously high elevation in systolic blood pressure in the Pulmonary Arteries in the lungs. These are the arteries that carry blood from the heart to the lungs to be oxygenated to carry oxygen to the rest of the body. My Pulmonary ...Arteries are constricted, thus restricting blood flow, which backs blood up into the right side of the heart and elevating levels. Eventually this causes Right sided heart failure. There is no cure for this disease as of yet, but there are many researchers out there diligently working to find one. This disease knows no boundaries, such as age, race and gender. Only about one person in a million Per capita per year are diagnosed with PH, which estimates currently about just less than 100,000 people here in the USA have it. Some of the symptoms of this disease are: Unexplained shortness of breath, chronic fatigue, chest pains, dizziness and fainting. This disease often goes misdiagnosed until it is too late because it can mimic so many less serious conditions. There are currently two tests that can be done to diagnose this disease. One is an Echocardiogram which is a sonogram of the heart and is often definitive and inaccurate and then there is the most accurate way to tell and that is by having a Right Heart Cath, where doctors usually insert a catheter through the neck or groin and push instruments up through the veins into the heart in order to get measurements and readings directly from the source. Just wanted to tell you a little bit about my Rare disease. Please, if you or anyone you may know suffers from any of these symptoms and the treatment they are getting does not really seem to be working, PLEASE get tested for PH as early diagnosis is essential for a good prognosis.

I thought she did a great job of describing it. Few people who read this will ever need testing or deal with it because it is so rare but most people take two years or more to be diagnosed with it. Breathlessness can mean so many things. This week I have been dealing with two problems that may or may not be related to the PAH. One is very bad nosebleeds. I am talking the kind that last over 40 minutes and respond to nothing. Eventually huge clots are forming in the nose and falling down. It's grosser than I can describe and very difficult to deal with. I have ruined clothing etc. On Monday I finally agreed to have an ENT get involved .He told me that my blood vessel in my right nostril was really bad, in fact raw. I needed to have that cuarterized. Once he did that a few times (chemically not the ancient heated iron method!) he checked out my left nostril, which has been less of a problem, and decided that one needed doing too. I had that one done as well. It really burned and then my nose dripped clear fluid for many hours afterwards. For the next three weeks I am not allowed to blow my nose (and it feels stuffy) OR sneeze without opening my mouth. Try that. Not as easy as you would think. I have different saline solutions and antibiotic ointments that get applied three times a day. What fun. I am on blood thinner for my artificial heart valves so that may be what caused or contributed to the problem as well. I go back in three weeks and I certainly hope that this will end this problem.
I am also having stomach problems. I have chronic indigestion. What I eat has little effect on it. I have tried the two week trials of Prilosec and the minute I stop them, the problem is back. My stomach has become so very noisy. The PH medicine I take is known to cause stomach issues. It could be that. I have an appointment with a gastro and am hoping he will know what to do. Because of the PH medicine there are restrictions as to what I can take. I don't think I can tax anything as strong as Nexium and the Prilosec has to be the lowest dosage.
We will figure it out. I feel as though I am making headway, even if slower than I would like.
We are expecting some snow this morning. I am excited. We only had a dusting earlier this year and since I am not going anywhere the next few days a few inches might be nice. Rob has been having a problem that we are also dealing with. Hopefully it's nothing but he is missing work to go to appointments. He has used all his time off. As long as he is okay, it's alright.
I am hoping Leap Year will be a great year for all of us. Lots of new beginnings out there. :)

February 22nd.....an anniversary of sorts

Today is the day my Dad left us a year ago. While I hated seeing him drift away slowly, losing bits of him almost daily, I was not prepared for the void his loss would leave in my life. Dad was always the one who made us feel secure and we knew that he had our backs. He might be angry but he would come through when needed. Ironically, it was Dad who told me he loved me, dispensed hugs and kisses and ran to help in a crisis. My mother was the one who rarely showed emotion and deferred all decisions to Dad. She would always say she couldn't help one of us because the others would be jealous, so she said she could help noone. Still, my youngest brother received a large piece of property(who insists he paid for it because my Dad required him to pay the legal/survey fees involved ONLY.) My mother always complained my father did everything for the boys and one day it would be made up to us. Dad is gone and she continues to do this, particularly in the case of my youngest brother. Last week on his wife's birthday she went out to dinner with them. She has NEVER had a birthday dinner with me since I left home the day I turned 17. On Sunday she took the same brother and his wife out for brunch because they drove her to her church some less than two miles away. She will use any excuse to justify her behavior. When I told her I was unsure how I would be able to make the large car insurance payment she advised me to sell my grandmother's china I inherited. (It wasn't HER mother's china of course.)
I don't want to go on and on complaining but I think you can see where I am coming from. My father would have been disgusted by that comment. I am struggling to get through the day. I already drove to the hospital and had a blood test and ran into the grocery store for a few items. I am going to sign off and wash my kitchen floor. On days like today it's hard to motivate myself to keep fighting to regain what I can of my health. The largest part of me wants to go crawl into my bed and pull the covers over my head. IF I came out it would only be to eat some high fat/high caloried ice cream and watch movies like Steel Magnolias. I refuse to give into that but it's an ongoing struggle.
My mother-in-law, brother-in-law and niece are coming Friday. I am so hoping and praying I will feel good that day and be able to do some things with them. They are going to be leaving Saturday, a short visit.

Happy Valentine's Day!

Today is Valentine's Day and I want to wish everyone a wonderful day. We can all find love in our lives if we look around. It doesn't have to be a significant other, it can be a beloved pet or friend. I am lucky to have Rob (we have been together twelve years) and friends and my beloved furbabies who all shower me with love. Friends can often disappoint us and I am trying to remind myself that most of my friends have never been sick. They are clueless to what I am going through/the battle of the past few years. I have tried to talk online with other people who have pulmonary hypertension. I have so much in common with them and they all struggle with friends who are also clueless when they are having a bad day. There really isn't anything anyone can do other than to be empathetic and understanding. One of the things that I don't like about Facebook is that people read your statuses and think they are following what is happening in your life. They throw a comment here and there and think that is what friendship is. Perhaps to some that is what it is but not to me. It's a good way to stay in touch with acquaintances but I don't think it can be a subsitute for a genuine friendship. The older I get the more I realize they are few and far between.
Today we acknowledge love and how sweet it is. I know what it is like to need someone and not have anyone, although I was married. Rob has filled so many voids in my life. He has been my everything the past few years. It's been a heavy burden for him to carry but he never complains. I wish I had the money to show up at his job with a brand new car for him. I wish I could do the most wonderful things for him but I am so limited. All I can do is show him what he means to me and try to take care of him the best I can.
Today I am going to treat myself to a pedicure. I'm not really supposed to have one but we won't tell the doctor. My toenails are a mess and it hurts me to try to do anything with them. Anytime I get in a position where I am compressing my lungs I get lightheaded and have been told I could pass out. Not cool. I need a mental health lift for myself. Where else can I get there for $20.00? A bargain I think. So today I will get a bright and cheery color (to combat the drab of winter without the ice sparkling.) I will think of those who have made me feel so loved and hope today they know how special they are.

Back to the usual...

My aunt went back to Maryland on Sunday afternoon. Yes, I already miss her. We didn't get to spend as much time together as either of us wanted. The few times my mother invited me to join them I wasn't feeling well or just couldn't. On Saturday I picked her up and we went shopping at the Crate & Barrel outlet then the Coach outlet where she was thrilled at the prices. She left with two bags and matching wallets for each.

I have been feeling extra tired and sleeping more each night. I am also having a swelling in just one of my feet. The foot is painful to touch. I am sure it is full of fluid. Tomorrow I will have to go see a doctor I think to have them confirm that is all it is. I spent much of today trying to get papers together for the long term disability company. They have been subsidizing my SSDI to see that I get a total of 50% of my former salary but that ended January. I am trying to see if they will continue until July. In order for them to do that my doctors have to document that I could not do my job. Clearly, I could not. Unfortunately, I have many doctors involved and all of them must fill out and return the papers. I don't know why they make me do all this over and over again, well they just don't want to pay if they don't have to. They are a business, not a charity. Since SSDI approved my first application that means that the long term prognosis is poor at best. I was told by them most applications approved the first time are for stage 4 cancer patients only. I am glad for the SSDI but it's just nowhere near enough money to meet my expenses, even added to Rob's salary. I have taken on the Scarlett O'Hara attitude "I'll think about that tomorrow."

We are expecting a snow shower tomorrow and I am really excited. More expected Saturday. I am coughing and hoping I am not getting sick, especially with the P____ I cannot even say the word. Going to shut the computer down now and watch tv with the husband. His birthday was Friday. We went to Longhorn's and I got him the most delicious cake with fudge frosting. I felt fat cells multiplying as I looked at it! To compensate for what he had that night (filet mignon wrapped in bacon) today I made vegan vegetable soup. It was so delicious. I make it Italian style and honestly, it was better than Olive Garden and had a lot less salt. I tried to buy all the products I could salt free. Yummy and we have lots leftover too. I love soup in the winter.

February? Really?

It's close to 70 here today and the sun is shining. How odd. We've had no more than a dusting of snow about six weeks ago. I love the four seasons. It seems we have three now. We had sprung for a new down comforter that we can't sleep under without being too hot. Where is winter?

I've had a lot of random, crazy thoughts lately. As I write this I am having pains in my chest, something I rarely get. It's like a needle stab.

These are my thoughts: WHY? WHY? WHY?
I try to distract myself from the negative but it's ever present. I am trying to be calm in the center of the storm of all storms. Why do I feel so alone? What can I do to get through this? I want answers. An email from God would be nice. I would appreciate the answer to even one question. I never want to hear the word terminal again. EVER. Incurable is more tolerable.