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.