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.

New Blog Look

Today I got a yearning to update the blog look. I get bored with the same look all the time although I did love my lil snowman. I haven't been feeling well today. When the weather is rainy, warms up, then turns cold it has a negative impact on my lungs. I am also having ongoing stomach issues.
Yesterday was my mother's 80th birthday party. I got completely overwhelmed. I was worried with three brothers and four nephews we would run out of food. I made THREE pounds of baked ziti! It was really good and we had four pizzas and salad and honey barbequed chicken legs, wings and breast pieces. Delish. There was more than enough and my mother will have leftovers for the entire week, even with company! I cut my finger slicing bread and with the blood thinner, it bled and bled. I got exhausted and thank God that midway through the food prep my son called, told me I sounded tired and he was concerned, and he came to help me. We didn't leave a dirty pot or pan and he carried all the food to the car and into her house. I couldn't have done it. Everyone seemed to have a nice time. I also bought a cheesecake for my aunt who is visiting. Her birthday was in September and she had never received a birthday cake. We wanted her to feel special too. I think it worked :)
I'm glad my mother had this birthday. I don't think I will be able to do anything like this again. Today I ache everywhere, am short of breath again etc. I slept ten hours with oxygen overnight but still am not where I should be physically.
I am on an emotional roller coaster which seems to be out of control at times. One minute I find myself very depressed and the next just determined to fight to the very end which will be a long time away. Reality sets in and I grasp that this is all unknown territory. I KNOW that I have a fatal illness. That illness can cause sudden death or respiratory failure which takes years. Noone knows why some patients live so much longer than others. I read that because I no longer have my spleen my lifespan will be shorter as well. My family seem not to grasp any of this. My sister came to my mother's last night and hugged and kissed a sister-in-law and when we said hello, we weren't even acknowledged. I just don't get that. My oldest brother has been calling a lot, he made it a point of hugging me and offering to help etc. He and his wife bought us a special Christmas gift. My middle brother and his wife are loving, kind and supportive but have had their own stuff to deal with this year. My youngest brother came to my door last week but it was an odd visit. His wife didn't want to exchange gifts this year she said but then showed up at my other brother's with gifts for his family but not for mine or my sister's. This is the one my sister acted so happy to see. I don't get these people, I really don't. I am starting to let them go. The ones that can't see beyond themselves....I couldn't treat an acquaintance the way some of them have been treating me. I know that someday they will be sorry in the long run but I find no comfort in that. I have to focus on the people who have chosen to be there for me.

The Value of Friends

Last week I had lengthy conversations with two different friends. My friend Monica I met when I was 19 and she was older, married with 4 children. We worked together. She has ALWAYS been there for me....through cancer, heart surgery etc. It's been mutual as I have always tried to be there for her, as when her husband died. Speaking to her is like getting a deposit in my emotional bank account. She builds me up and encourages me. We talk about her problems but she doesn't dwell on them. She's a good friend who lifts me up.
Last week I also had a conversation with a friend I'll call J. She had just gotten back from a vacation (which she was treated to by her mother who she is always complaining about.) She called and launched into a tirade of how she had played tennis and fallen and her injuries were inconvenient. (These were minor injuries.) She went on and on. I was silent for a long time and then she said "And how are you?" I paused a few minutes before telling her that it has been five years since I have had a vacation. I told her that she really needed to stop dwelling on the minor stuff and focusing on the big stuff. This friend has been calling and when we hang up I am emotionally drained after listening to her. She is dragging me down, not lifting me up.
I have made up my mind that at this time in my life I can't allow people to do that to me. I am fighting a rare and fatal illness that some people manage to battle for twenty years. Others don't do well. I can't help but wonder how the mind contributes to this. We only have so much emotional energy. When it is used up in a negative manner, it's gone. There's none left for the positive thoughts or the strength on a bad day to get through it knowing another good day is on the horizon. Life is all about choices. In the past I was willing to make choices that were not good for me in order to be the friend some people needed. I am not responsible for the needs of my friends, nor are they responsible for mine. I do however require that they are considerate of me enough not to use me to dump on. I don't deserve it and I won't accept it.

Oh Mama

I have been so busy shopping for and planning my mother's birthday celebration. Weather permitting, all five of her children and her only sister will be there. I am excited. I am making a large tray of baked ziti that morning and doing a huge salad, picking up helium balloons and setting up a buffet at her home. (My house is too little to accomodate 14 adults and a few little guys.) I have her gift basket too. She loves this author whose books are no longer printed and we did a search on Amazon. Com and I found her four that she wanted. They are in a big basket with some great snacks, candy and a wonderful new tall mug for her Keurig. It's hard to believe she can be turning 80. When my father died, I realized that one day my mother would be gone too. For those of you who have lost one parent, I know you understand. She has slipped in her mind more than in her body, but she is aging. Yesterday she took two doses of all her meds. She was really concerned. Dad's hospice aide, Tom came over and assured she would be okay. I went and spent the day there and we ordered dinner so when we left she had stew I had made, a large chef salad and chicken parm in her fridge for the next day or so. We also made a huge fire in her woodstove. Will probably go over later this afternoon and make sure another fire is going. I can't carry or lift the wood but she can and I do the rest.
My ulcer is really painful these days. I am taking Prilosec and am restricted with the PH med as to what I can take. Everything I put in my mouth gives me heartburn.

There is a lot going on in my family right now. Since my Dad died the family dynamics have been topsy turvy. I don't want to get into it, but it's difficult. One of my siblings came to my house feeling "out of the loop" and I tried to expalin that we are ALL feeling that way. I went on to say that with all my health issues, the family dramas are NOT my top priority right now.
Well, this is short but I need a long, hot shower. Not feeling so great today. It's noon and I am still not showered or dressed.

Turning The Page

One of my New Years resolutions was to read more. There was a time when I read two books a week. I have had dry eyes and it makes it difficult to read. I have also switched to progressive lenses which I don't see as well with to read.
My reading glasses are an old prescription. I need to go to the eye doctor and get them checked again and maybe get another set of lenses for them. My DH had read The Girl with the Dragon Tattoo and the sequels and really liked them. I just finished the first one and have started on the second one (yes in ONE week. woohoo). They are so well written and I am a bit envious of my friend, Monica who read them in their original Swedish. I met her when I was 19 and she seemed so sophisticated, having left her Sweeden and lived as a governess in England before meeting a US soldier there and coming back with him. She took me under her wing in many ways while we worked at McGraw-Hill. After my son was born I quit. There was no child care back then and I lived in a rural area. Noone I knew was babysitting and for the next twelve years I was a stay at home Mom. After that I went to college part time until my son became ill at 16 and the next three years were spent taking him for medical treatments when he wasn't hospitalized. When he was, I slept in a recliner in his room. When he got better I went back to work and worked up until last year about this time when I left sick. Although I planned to return about this time, the company let me go and I discovered that I am no longer able to work. It's such a huge adjustment. I miss my coworkers. I miss the socializing. I miss my paychecks. I even miss my cafeteria with our own little Starbucks in it. It's like my entire life has changed so much. There was a time when I had so many friends. It seems over the years they have moved away or their lives went in a different direction. I feel alone much of the time. One of my friends was going to come visit today but ended up in an emergency room with her elderly aunt. If only there really were a time machine and we could go back. If only I could feel what it was like to be 19 again, healthy and strong. I don't remember what it was like not to be short of breath. I've been this way for years now. My neighbor came over yesterday to check on me and we went for a walk. She couldn't believe how much trouble I had going up a small incline. I have oxygen but it's so heavy to carry. We had thought we would go a mile. I had to stop after half a mile. At least I made it that far. It was good to spend time with a friend.

A Big Surprise

Today I saw the mailcarrier walk up to my door with what looked like a delivery from Omaha steaks. Just as my chops were watering I saw that it said "FRAGILE" all over it and knew it had to be something else. A girl I have known since I was 9 years old sent me a big package filled with gifts. Her birthday is Nov. 26th, often Thanksgiving Day and some bad things happened all that day. She chose not to celebrate. I knew that noone, including her husband, would acknowledge it and I sent her a package that arrived the day before with a birthday and Christmas gift. It turns out it made her birthday happy again and she said it was her best Christmas ever. When she called me, I told her Rob and I had been gifted money by our Moms and aunts but it had been used for Rob's car repair other than a purse for me and paints for Rob and a few other things he wanted. Under my tree I had a few things from him and a small box of candy from my neighbor across the street. It was a lean year. This friend snapped into action to fill the box with things that I would really like. She even threw in a few things for Rob. She gave me a beautiful satin nightgown with the matching robe, bath gel, lotion and perfume in a Jasmine scent (really pretty), a Thomas Kinkaid winter house that lights up, a winter jacket, earmuffs, mittens and a beautiful plate with a stand that says "Flowers Feed the Soul". It felt more like Christmas today than the actual day and it was so exciting. I'm not a materialistic person and she went overboard but the thought in what she did, and the time it took her to shop and wrap and package it all, was what I truly appreciate. She is not well herself and works part time.

I have been waiting home all day for the delivery of my medicine. It is sent UPS and I have to be here to get it since it's so expensive. Yesterday I was up early to go see my cardiologist and that became a bit stressful which I will talk about in the PH blog. Right now, I feel very special and very cared for. It just doesn't get any better than that. :) Thank you Dee. ( Pictured at top. )

Zippity Do Da .....

I was awakened about 5 a.m. by ear pain. It felt like pressure but when I got up and began moving about it went away. I have already done two loads of laundry, had breakfast and washed all the pet bowls. I even tended to my virtual farm on Farmville which has been neglected. When I get done blogging I have to go continue with laundry folding.

I have been so busy getting my mother's 80th birthday planned. There is so much confusion when you have five children, each with their own ideas and opinions. I wanted to do something in her home so that all her family, including grandchildren could be with her. It looks like it will be everyone there at this point, including her sister from Maryland. Great photo opportunity. My brother is furnishing many pizzas and I am going to have a large tray of something (ideas running through my mind are a chicken or pasta dish) and a salad. Of course there will be an enormous cake and other things people decide to bring. When you do this in a restaurant they rush you out and noone wants to come back to the house for the cake. Been there, tried that. Also, I am so limited with my sodium in my diet there are few places I can eat at. Most of my family love the Olive Garden. There is nothing there I can eat. I refuse to go and watch others eat or pay for a meal that I can't have. It's not fun giving up salt. I will not be able to have pizza but they all love it. Thinking I might have a crock pot of dirty dogs too.

I had a rather unpleasant experience at Costco this week. I went to buy something at their food court and it was going to cost $2.76. I took out two singles and found I didn't have the change so as I handed the young woman behind the counter my money I said "Oh, this is making me break my twenty." She was ignoring me and looking all over the place. She handed me some bills and over that was a paper plate. I put the plate down to put the money in my wallet when I realized she had given me change for a five. I told her immediately and she said "You gave me a five. " I responded "In my wallet were three bills: a twenty and two singles. Had you been listening you would have heard me say that I would have to break my twenty as I didn't have the coins to make 76 cents." The guy in the back asks her what's wrong and she says rather loudly "She says she gave me a twenty but she didn't. She gave me a five." Now people in the line are staring at me like I've done something wrong. I ask her to call over a manager. She does and as the manager approaches she calls out "What is wrong?" and the story gets loudly repeated. A part of me wanted to walk away but I refused to be ripped off by this person who has no manners or concept of how to treat a customer. I ask the manager to pull the drawer and count the money and give me back my $15. She tells me that it will take well over an hour and it would be easier if I would wait until the following morning after they count the drawer she will call me and then I can come pick it up. I explain that a. I am not the one at fault b. she needs to instruct the woman to stop saying that I gave her a five when I didn't even have one in my wallet and c. that perhaps this was not an accident but deliberate and that I have heard some cashiers do this and later remove the extra money. I prefer not to be inconvenienced to return.

The manager is very nice and clearly running around like a chicken without a head. I don't want to be unreasonable to I tell her to call me in the morning and I will return. On my way out I go to the customer service desk and ask if I might speak to the store manager. I'm not really comfortable leaving without my money and don't get why pulling the drawer would take that long. She calls up the same person I have already spoken with who repeats it all again. I tell her to call me in the morning and I will return. It's not that far.

The following morning I took the dog to the vet and got home and when I still hadn't received the phone call as promised at 11:30 I call the store. I am then told the person who looks at the sales and drawer amounts has not come in to work and was supposed to be there at eleven o'clock so now I am really annoyed. She tells me she can't give me a refund without approval of the store manager. She will call me back. She calls back and says he's not available for her to speak with. She will give me a gift card with the amount on it. I tell her I am going to call their corporate headquarters. I call them and they agree I was not treated well. He will call the store and speak with them. He said they should have pulled the drawer. He says to go there and speak with the store manager. I return and once again am told he is not available. The food manager tells me she will cash the card for me so I can leave with the cash. Folks, I am not happy. I was seriously inconvenienced and I never did receive the call back yesterday afternoon the customer service supervisor promised me. My neighbor who works at Wegman's told me my treatment there would have been much different. They wouldn't tell me if the drawer was over or not and I feel that they are hiding something. I will not be doing the majority of my shopping in Costco. I will do my shopping where I receive good customer service.

One Bad Night

I don't know what is going on but it seems I have a real indigestion/stomach issue. If I drink coffee I pay dearly but now even food is doing it to me. I have what taste like sulfur belches and went to search that on the internet. It says that can be an indication of a duodenal ulcer. I am on another medication that can cause ulcers also.
Last night I had a salad with chicken breast in it for dinner. The pain/discomfort began around 9 o'clock and I couldn't sleep. When I tried to lay down the acid was coming up my throat and I was getting nauseous. Finally, I was so desperate that I called the drug company's nurse and asked her. She told me to try Tums and it worked. Mind you, I would have tried that on my own but you have to clear anything you take over the counter with them. The drug can interact with herbs and OTC meds and you can have serious problems. I finally conked out about three a.m. and slept until noon. My dear husband was off today but got up at 7 a.m. to care for the pets so I could sleep in. I feel so badly at how much this illness impacts his life. I have been on this medication for three weeks now. I have never had so many side effects from any drug I have ever taken as this one. I have no choice. I am battling to get the pressure in my lungs/heart under control. People can't see those organs or the nausea and want to tell you look great. I appreciate that but they should only know. Somedays I am just tired and miserable from the side effects. I hope and pray it will get better soon. I think it will.
Happy New Year!

Bueller....Bueller

I have to rant for a bit. If you don't like ranting just skip this entry. I have posted on my FB that I have pulmonary hypertension. Anyone who has any interest in knowing what is going on with me could look it up through google. You quickly learn a few things. #1 It is incurable. #2 There are nine drugs used to treat it. (Some require a central line put in to use as they can only be given intravenously. Most of those also require you have a pump to push the medicine through 24/7) #3 You have good days and bad days. Now, having said those simple things why do people either a. act like you are dying soon or b. act like there is nothing wrong with you or c. act like you will overcome it completely. I am a realist. I don't plan to die in the immediate future. I plan to try drugs, I have started the first one nearly three weeks ago. There are days I feel like I have an incurable disease. There are days I feel okay enough to do some things. I will never feel healthy or energetic as a normal person would. This week one friend (who I believed was having some wine early in the day) called and cried about what a loss she would suffer as I was the greatest friend. To be honest, this annoyed me but didn't upset me in any other way. It annoyed me more when a friend I sent a letter to just ignored it. No phone call but yet another FB message wishing me well, in a generic sense. One of my friends I have made who also has PH (so cute they call each other PHriends) advised me I need some new friends. She said you need support and the people who can't offer you that don't really care about you. I think she was right.

Another Disappointing Christmas

It's been so many years since I loved Christmas.....I guess when you aren't a child, or no long have a long child something in the excitement gets lost. This year, like so many before it was a huge disappointment. It actually started weeks ago. A sister-in-law decided she no longer wanted to exchange gifts. This is someone whose income is multiple times what mine is and gets everything she wants all year long. She no longer felt she wanted to buy us gifts or receive things that she didn't want. She told me that she was going to do this with the entire family and not attend my brother's Christmas Eve family gathering and gift exchange. After she told me that she said "Is that okay with you?" How do you answer something like that, if you say that it's not okay and you want to exchange you are trying to make her do something she doesn't want to. Besides she said she wasn't going to my brothers so I didn't think it would be so bad. About a week later she informed my sister of the same thing. That night she was at my brother's and guess what? She didn't tell them she wasn't exchanging gifts and she had a nice pile of gifts for them. When we arrived she had made sure she arrived early and was in the kitchen away from the others when they arrived. I was really hurt and felt mislead. While this may seem trite please remember this is a year where my father died, where I was hospitalized four times, had the heart surgery and received the news that my condition was not curable. NOT a good year to put it mildly. I tried to focus on the my loving sister-in-law who was the hostess. I cried when I got home for hours but then tried to let it go. I knew Christmas Day they would not be at my mother's. I arrived at my mother's (with a seven pound hot ham and casserole dish of sweet potatoes) and they were no where near ready to eat. My mother is very disorganized and nothing in her kitchen is in the same location twice. We never could locate the turkey lifters and my sister struggled to get a twenty pound turkey out of the oven with a fork and pancake turner. Needless to say, it fell apart. We sat down to dinner and things didn't taste right or well to me. I was freezing as well. After dinner my sister and I were sitting in the living room talking. The back door into the family room/kitchen area opened and I heard someone coughing their head off. They sounded very ill and I realized it was my sister-in-law bringing over my mother's gifts. I felt anxious as her coughing sounded like bronchitis or worse. Around that time my brother started a fire in the wood stove and a horrible smelling smoke filled the downstairs. At that point I knew I had to leave. Rob had run home to feed the animals dinner and I called him and told him to get right back and pick me up. He found me waiting outside wrapped in a blanket. When I grabbed my purse from the room the cougher was in she said something like "Where are you going?" I answered "No where near you." She then snapped to my brother "We're leaving." How thoughtful after contaminating my eighty year old mother and her home with her germs and filling her house with smoke, they were ready to leave. When I got home I was so cold I shook for hours. As the night progressed I felt worse and during the night I began vommitting. I will not be planning to go to my mother's house again. She knows where I live and can come here. My sister feels I am not up to entertaining here but trust me, it's a lot better than what happened to me yesterday. My stomach is touchy today but not like last night. Next year I want to skip it altogether.

The Stockings Were Hung Sans Chimney

Sometimes I really, really, really miss my old house. In particular the large dining room where I had family meals and my fireplace. Oh how I loved the cozy fireplace. It burned wood for many years and the last few years I lived there I had it converted to gas. That was pure heaven. The logs, though ceramic, looked like oak and the warmth was amazing. At Christmas time I loved to hang our stockings from it. We are those nutty type people who have stockings for each pet as well, even birds. The stockings always held gifts as well as candy and smaller items. They still do. I had a huge tree back then. We had grown many of them on the back acre of our property. While it bothered me to cut them down I was glad I did when a neighbor who later moved in behind us cut down about eight huge blue spruces that had been planted for that purpose. He thought it blocked his view to our garden. I was so outraged but it was too late to be rectified. What really infuriated me was that this man from Long Island never bothered asking us where the property ended and we had paid the surveyor several hundred dollars to sink concrete markers should we ever need to show someone. Had he just ASKED those trees would still be there. He left them on OUR property after cutting them down to rot. But I digress.......in our newer, smaller home there is no place for a fireplace at all. It's completely open. The kitchen wall over the sink has a huge opening into the living room so you can communicate with someone there. While I like the openness of it, you lose wall space. Our TV could only go on one wall. The other wall has a huge bay window. It's really tough placing things, especially a Christmas tree. We always put it in front of the window. We have a slim tree and it fits nicely. My tree does not have a theme, as some do. My tree has ornaments that were made by my son when little, or given by friends many years ago. Some break and new ones are constantly added. It's a tree of memories. This year two new ornaments were added. One in memory of my beloved Grandmother and the other in memory of my beloved Dad. How my grandmother loved Christmas! She started baking a month in advance. She did so wearing an apron with Santa popping out of the chimney. She made one for herself, one for her mother (who was in her late 70s at the time but still baking!) and a small smock type one for me. I have mine. It has been laundered so many times it has a small hole in it. It's one of my treasures. That and the paper mache' Santa that my son made me. This has been a rough week. My mother has cried day and night on and off most of it. Sometimes I cry with her. We have been to the cemetery twice. No Dad there carving the meat at the head of the table. He hadn't been able to do that the last year and a half either. We could never please Dad with gifts, he enjoyed giving them but not getting them. I miss him so much. I bought these small ornaments with a place for a picture. On the outside they say "Forever in our Hearts" and I put Dad's picture in them. On the back I used a label maker and printed out a message that my sister and brothers will read when they take them out: " We were blessed. We had a father who loved us." It's my way of honoring him. My father was not perfect. He made bad decisions sometimes and he yelled to excess at times. I have some of his faults and some of his attributes. We both are quick to forgive. When I read some of the horrible things that some parents do to their children it makes my blood boil. All children deserve to be loved and kept safe. Since my Dad is gone I feel less safe somehow. Silly perhaps, I am an adult. While a part of me will be sad on Christmas Eve and day, I will do the best I can to enjoy the moments. I know it's what my father would have wanted me to do. I can still hear his voice in my head "Oh babe, it's not that bad." You're right Dad. No matter how bad it seems I know there are others who have it so much worse. I will always fight for a good outcome because you taught me to hang in there when the going got tough. Thank you Daddy. I love you and always will.

It's Beginning to Look a Lot Like Christmas

We got the tree up! Rob put it up Wednesday night and I decorated it in short sports of effort on Thursday. When he came home it had all the ornaments and garland on it. I was also baking sugar cookies and he helped me. I make the same sugar cookie recipe all the time. I have cookie cutters for vaious holidays and it's a standard. I get requests for them. This year I did colored sugar for some but frosted and decorated others. I should have taken pictures before putting them in the tins. We decorated them with white or red frosting and the Wilton bags with tips. My angels were very pretty with tiny decorations that look like pearls. So yummy.

I was supposed to go to rehab today but just couldn't as my legs were in so much pain (a known drug side effect.) I was up for hours during the night. Rob called about 11 a.m. saying he felt ill and was on his way home from work. Right now our gifts are purchased, tree is trimmed and cookies are baked so we can relax a bit. I am giving fewer gifts this year. Does anyone else feel annoyed, as I do, when you see commercials where they are giving diamond jewelery or a new car? PLEASE!!! In this economy where some people have no jobs it's just wrong to imply you are not a good spouse if you are not giving a gift like this. I cannot imagine how materialistic some of the kids who view these from birth will be. Because I am home and get bored (or don't feel well enough to do anything other than watch tv) I have watched some of the Housewives of shows....some of these women are unbelievable. A man presents a ring to his wife and she can't thank him until she adds up the diamonds and tries to estimate the carats. I actually wonder are they kicking this up a knotch or two for the camera? I hope so. They attend/host charity events that are a joke. Not that much money seems to be made and the focus is on what they are wearing or eating and gossiping about those not there. When it comes to their affairs the sky is the limit. One group was critical of another member because she doesn't work and has three nannies and other help. I have to wonder what would happen if they had a real problem to deal with (well at least not one they created.)
My sister is coming Thursday. That leaves us three days to visit and shop before the Christmas Eve celebration at my brother's house. They always have everyone and a huge spread of snacks and desserts. I'm doing a Christmas dinner with ham, with my sous chef's help. :)
Hope the sun is shining in your little part of the world today.

The Adcirca is here!

I got the approval and my drug arrived today. At 3 p.m. I took my first dose. If you want to know more about that check the new blog with the link in my last entry.

Rob and I went out last night and I had a drink. I will only be allowed to have 4 ozs. of wine once a week from here on. The alcohol affects blood pressure and so do the meds so they discourage drinking. We went to Chili's and a got a snack. Also went the mall and splurged on a new down comforter. I tried to be more economical and get a down alternative but it didn't compare. I got a Macy's coupon and it was only $50 more to get the real down and well worth it! We had ordered a red duvet cover a few weeks ago but when I got out our cold comforter it was in bad shape. Besides, they know make them much bigger and there won't need to be a tug of war while we are both sleeping! It's hard enough to sleep with a Cpap mask on without trying to get my fair share of the comforter.

Today I went to rehab and then came home but was exhausted. I changed the sheets on the bed and managed to get the new comforter into the duvet. I still have cookie dough waiting to be made into fun shapes and decorated. We have yet to put our tree up and Rob is out now picking up a few groceries and looking for some things he wants with Chistmas money from my Mom.
That's about all the news for now. Supposed to rain tomorrow and maybe I can get Rob just to get the tree down and together. I have all day tomorrow to decorate it and work on the cookies. Hopefully I will have a good day.
Hope you will too.

Pulmonary Hypertension Blog

I didn't start out with the idea that this blog would be dealing with my illnesses. It was just a place to write my ideas and stay in touch with some of my friends. Since I have so much to say about the subject and I find there is little in the way of support for other patients who have this (it is called an orphan drug because of it's rarity there are few organizations who support it and the costs of the drugs are great.)
If you want to follow my journey with the PH the new blog link is:
http://underphpressure.blogspot.com
I will be posting here as well but not going into the details that I will there.
Peace.

As Tom Petty Said "The Waiting is the Hardest Part"

I am still waiting to hear that my insurance company approved the medicine for me. Since this is an "orphan disease" with few patients, the cost of the meds are astronomical. The one I am trying to get would be about $1600.00 per month. I have no idea what my copay will be for the drug. There is ONE charity that helps people and the drug company will help with the copay but no more than $800.00 per year. If my copay were a thousand dollars that would be used the first month. There is limited resources here and I am eager to know what the copay will be. I do know that I will not wipe us out financially for a drug that might not even work. I am not sleeping well and at times feel overwhelmed. I continue with the cardiac rehab although at times I have to stop or slow down. Rob has been working all the overtime he can get. It gets dark early now and it seems the days are very long. Somedays are not so bad and others are terrible. This goes with this disease. I hope to be better once on the medicine. They tell me it will be easier to move around then. I still have some post surgical pain and the rehab is not helping. Some nights I have to take a pain pill or I won't sleep at all.
My Christmas tree is not up. I keep going back and forth as to whether it is worth the trouble. I do have lit wreaths and garland Rob put up outside and some decorations here and there. I can't find my merry. I hate uncertainty.
I have most of my gifts bought and wrapped and cards were mailed. I'm going through the motions. I went to a support group meeting that was supposed to be a holiday party. I heard the word fatal so many times I felt dizzy. The speaker was a wonderful doctor who knows my doctor and told me I was in good hands. My sister and brother both called to have lengthy conversations and I visited my middle brother Friday with his wife and grown children. It was wonderful. Life goes on no matter what the circumstances are and I keep telling myself that I beat cancer twice, survived two heart surgeries and pneumonias where I was critical. I have to rise to the challenge and get this under control. Hopefully they will keep finding drugs to buy time until they discover the cure.

Back to Philly and Another Doctor

Yesterday I was called back to Philly to see the pulmonary hypertension expert. It was a lengthy visit as I had to do a six minute fast walk to test oxygen level and he reviewed my recent echo and information from my catherization. We already knew I had this condition but he confirmed it. Sadly, this is not "curable" but we can hope to manage it with some meds. Most people don't know what PH is and what causes it. Most people think it's blood pressure related, which it isn't. There are a few different causes of it. Mine is secondary (meaning it was caused by another condition) and was caused by my mitral valve which was recently repaired. The hope was that when the valve was fixed the other condition would significantly improve if not totally be eliminated. Apparently, because the valve was bad for so long it has caused permanent damage. The bad valve was putting so much pressure on the lungs that the arteries in them became smaller. As a result of that, pressure built in my heart to many times what it should have been. Now that the valve has been fixed it's trying to pump properly but the lungs won't allow the blood in and the pressure in the heart remains too high. This causes the right part of my heart to be dysfunctional. The drugs that the doctor uses will open the arteries, dilate them and lower the pressure as well as make me have more energy and feel better. The insurance company has to approve the drugs which are rather expensive. It should take about a week before I know how much the insurance will pay and what my part will be. I have no choice but to use them, my heart cannot withstand the pressure for a long period of time. I am glad there is a treatment but I will feel better when I hear the numbers have gone down. This is a rare condition and I wish I could find a support group in the area but it's not likely.
At least I know now what is wrong, why I have been so ill and perhaps how to fix it. Progress. This means many more trips to Philly but when it's your life on the line, you do what you must.