Bee's Hive

Friday, July 29, 2011

Medicare D...playing games

I was so excited to get my new medicine approved by my doctors!  Hold on, Congress holds the money for Medicare D and the insurance provider's aren't taking any chances by the looks of it.

For 2 days I've tried to reach WellCare a division of  Walgreens, my Medicare D provider. When they didn't answer the customer Service line I tried the Provider Line. Looks like both lines are shut down for now. That means I can't get the new medicine or even the old medicine. Guess they are afraid they won't get paid.

For now I was able to get the Prednisone and Pain medicine filled and that will have to hold me over until Congress stops playing games and gets on with it! It's not the Social Security checks that will bring down people, it's the lack of medicine, those who have cancer, diabetis, Rheumatoid Arthritis and many other painful or life threatening diseases.

This President and 80% of both sides of Congress need to be put out to pasture. How could they let this happen to the people? If your listening.....I CAN'T WALK DUE TO THE LACK OF THE PROPER MEDICINE..I'M IN TERRIBLE PAIN..AWFUL PAIN..HORRIBLE PAIN, and now because you have played games with the peoples money, spent it like drunken sailors, I will have to kill my liver and heart with Prednisone. This is not the AMERICA, the UNITED STATES that I was born into.

Monday, July 25, 2011

Mother's with mental illness

I think most of us have been shocked by the Casey Anthony court case in recent weeks. Most people have mothers who love them so it's so unreal to think of a mother who could get rid of her daughter. Unfortunately this happens more often than you know because it happens in a less violent way.

I've searched for answers about my mother who was good at presenting herself as a mother who loved her daughter to those looking on...almost like a play or story she made up. Behind the curtain the demon came out. She suffered from a mental illness that most people don't even know about. Narcessistic Personality Disorder is a person who loves themself extremely and cannot connect to any other female who might step in front of her, even her own newborn. 

Before she died at age 83, she told me she hated me the day I was born because my father stopped loving her and only had eyes for me. She said she didn't want the competition in her life. She didn't kill me but what she did was just about the same because it killed me inside. She ignored me, locked me away, gave me away.

By the time I was 3 she had managed to make a small child into a child with no expression, sad, lost and had killed the connection to my father who was not allowed to show any love towards me. I can only remember small flickers of what happened to me but when I look at this photo I know all possibilities of happiness were already gone.

I don't think she ever hit me, but what she did in words and lack of touch was so much worse. I spent a life time seeing mother's and daughter's who loved each other wondering why I couldn't have just one day to know what that felt like. It was painful all my life. When I got that phone call my mother had found herself alone, old and she needed me to take her in and pamper her because without constant praise she fell apart. It gave me the chance to just ask her why she did this to me and why she couldn't love me. Her answer confused me at first and made me angry that I had suffered a life away because she was jealous of a newborn.

Since then, I have been able to deal with it as a mental illness that she couldn't help, and even if she had mental help along the way, there is no cure for this personality disorder. I'd like to say I forgive her at the end of my life, but I haven't gotten there yet. I wonder who I would have been if I had the natural love of a mother. In the end, my brother who she loved and covered him with everything I wanted, ignored her and in his own selfish way, left her to die alone. I don't know him because she cut us off as siblings in the very beginning.

When everyone was saying Casey Anthony killed her child so she could party, I knew that wasn't the case. She did just what my mother did. She dressed me up and in front of everyone she was the perfect Mom while all the time her hate was so great she was planning a way to end the competition. As sad as it is to think of this beautiful child gone from life, she won't suffer at the hands of a mother who just can't love her, who looks at her with hate and a heart of ice. I'm not sure which is worse, death or living with it. No one can help us when we end up with a mother who has a Naressestic Pesonality Disorder because they hide it so well while they are sucking up the praise that comes with being a good Mom. Casey couldn't just give Caylee over to her mother because she would have lost her mothers praise and love. I'm sure Casey was thinking her mother should have been the one behind bars because it was her fault...the fault of loving anyone more then Casey.

I don't know what happened to my mother. She was the middle child of 8, lost in the center between the babies who got attention and the older sister who was beautiful. I was told by one of her sister's that while they learned to stitch she went off with the boys to the swimming hole. She also was the only one who left home at an early age to a city far away. Was she born like this or did it happen to her at an early age?  I am trying to understand this and hope I find a way to forgive her.

Friday, July 22, 2011


I never get a window seat but this time the plane was full and I had no choice. I have to say I really enjoyed the sun coming up and the beautiful clouds.

I was never so exhausted when I arrived in Pittsburgh. First time I stayed at this hotel right in the heart of all the Medical Centers. This will be my Hotel from now on. It has it's own restaurant and each room has a balcony. Before heading to my room I grabbed a bag of food because I knew after I hit the room nothing was going to make me leave.

The sandwich was Tomato, cheese and spinach with an expresso and cherry pastry which I ate first..sweets are a real weakness! I limped onto the balcony and took photo's of all the Medical Centers surrounding the Hotel.

It was just past noon but it felt so good slipping into my Pj's and sliding into bed where I stayed until 4 in the morning! It always takes hours to get my body going in the morning but by 8:am I was ready for a breakfast sandwich and another sweet pastry before packing up and heading to the RA Center.

Back in December they were busy taking down the old Children's hopital and expanding the parking. The new construction sticks out set in the center of the older buildings.

Pain does terrible things to the way you look in general. I realized this when my doctor walked into the room, put his arm around me and said, "Why didn't you call me". We had a good talk and he noted all the new huge nodules on most of my joints. This makes it really hard to walk when you have marble sized nodules on your heels and toes. Clearly the RA was being pretty agressive, but I already new that. We talked about the hip surgery and back surgery I was suppose to have but the bone density tests showed the lack of good solid bone to work with...I had already decided not to have the surgeries because of this after doing some of my own research on the problems that could happen if I went forward with it. Controling the pain will be a problem but I've been dealing with that for sometime now. Compared to the RA pain it's really nothing.

After he checks with the liver specialist we hope to start a new round of medicine in a week. With liver disease I am limited to what drugs I can take for RA. Next visit in October I'll need to see the Liver Doc and the Kidney Doc. By the way, my RA doc is a Hottie!  He's so bookish I don't think he even realizes it! My liver doc is Arab. He looks like a movie star. East Coast doctors are just so professional looking, scrubbed and suited up in the lastest shirts and ties with starched white lab coats...I think you see this in University Hospitals in the east more then anywhere else.

Because UPMC is a teaching hospital I always allow the students to examine me. They ask hundreds of questions relating to the disease. I had to sign to allow them to read my file and see my test results. After all the Xrays and blood tests I stepped outside of the hospital door and grabbed the Airport bus.

This is a very strange bus. The seats fold up to make room for suitcases. It was packed with students sitting atop of all the back packs and luggage. They all were busy on cell phones or other new pads of one kind or another. The bus is equipped with computer access! I didn't have my camera handy but it would have made a neat time I'll remember to not pack the camera!

I flew out on American Airlines and back on Delta. I can see why AA has put in a rush order to replace it's ageing aircraft. The plane from San Antonio to Atlanta was in poor condition. I felt very uneasy until it landed. The next plane was newer but also aged. Coming back I had upgraded seating that was well worth it and I really needed the extra space after the past two days. My ankles were swollen so bad I had to wrap them with elastic bandages before boarding the plane. I don't even know how I managed to get off in San Antonio. I'm sitting here with both ankles and feet wrapped in ice packs.

I hope the insurance company just puts the new order through. It shouldn't be a problem since the new drugs cost half of what they are putting out right now. It'll take 3 to 4 weeks to see if the new meds are helping..what do they say? It has to get worse before it gets better!

Monday, July 18, 2011

Trips are exhausting!

I think I'm almost ready for the Pittsburgh trip, but will I have the strength to get on the plane! I went through my check list: wash, ironing, packing, moping, change the linens and cook.

I just popped the chicken for Wednesday's dinner in the roaster and that leaves veggies to bake tomorrow. I made lunch box cupcakes and graham cracker pudding cups. If I'm lucky I'll get my hair and nails done tomorrow and a long nap before being picked up by the yellow cab at 4:am Wednesday.

I hope I'll bring a miracle home but if not, at least I plan on bringing home some good Italian breads and baked goods! 

Dave likes his chicken hot and spicy

And then there is the "reminder lists" so I don't have to call home!

Forgot to mention we spent Sunday looking at neighborhoods and houses. We are leaning toward an area called Helotes, kind of pricey but safety is the main factor and it looks like we'll have to pay a price for that. There is an old time cowboy bar in Helotes where Willy Nelson started out. They told us he sometimes does a Saturday that would be fun.

Tuesday, July 12, 2011


Dave's working hours have changed everything in the house. Dinner is now at noon and he packs his sandwich for his evening meal at work. He's found the area he is taking his certifications in is just too far away from the main area and he likes sitting outside to eat. Since he leaves at 1:pm and doesn't get home until midnight I have found myself starting dinner at 9:am..rolling out of bed to prepare and cook.

Today I decided to cook tomorrow's dinner so all I'll have to do is heat it up. Of course I'll have to peel potatoes for mashed and whip up some cream for the pie, but that I can handle.

I made stuffed peppers and strawberry pie...I had to taste the pie just to make sure it was good and sweet!

Tuesday, July 5, 2011

Talking about life's ugly things...

I started this blog for my quilting but it has become the place where I want to keep my thoughts for my son. After covering my Rheumatoid Arthritis the next subject that no one likes to face is death. I feel like I need to explain my wishes so in the future my son is not judged as a cold person. He will be doing exactly what I have asked.

I've mentioned in my profile that I have liver disease. I have to go back to 1979 to explain this. After having huge children I needed bladder surgery, something that is not uncommon for women to have. My surgery didn't go to well when the doctor cut into a vein and I almost bled to death. I was given 2 units of blood after the surgery. Years would past before I had to look back on that time. Back then I was living in Philadelphia and remember seeing signs put up by the redcross offering $10.00 if you gave blood. I remember laughing with friends about it, saying we knew who would be collecting the money...street people.  Back then, blood was not screened. It wasn't screened until 1992. 

Moving ahead to 2002 when I had the first signs of RA, one of the questions asked was if I had ever had a blood transfusion. Before giving you any of the strong drugs for RA, first they give you a blood test for any liver problems. Unfortunately, my test came back with a positive for Hep C.  I knew that was bad but I didn't really understand what the disease was. It wasn't long before I realized that the transfusion in 1979 was actually a death sentence. Many people walk around with this disease for 20 or 30 years not knowing they were infected with it from a past transfusion. By that time you usually have liver damage. I want to blame it on the FDA, but what's the use of blaming anyone when nothing can be done, it's just too late.

This is a dirty disease. Besides people who got it unknowly from a transfusion, a big part of the Hep C population is druggies. The very people I would never have in my life, those I looked down on..the dirty bunch of awful human's....I was now one of them. I still have a hard time dealing with this. How careful I was all my life, doing the healthy things, being the good, nice person. How could this dirty disease get into my blood. I've had no choice but to face it head on, live with it, be sick from it but I'll never get use to it.

My son Dave has not let me down one day. He has seen me through some pretty awful times the past few years. Shortly after we arrived in Texas I took a down hill slide. I thought after going to Pittsburgh last December I would feel better, but it only lasted a short time. Again I am hopeful that my next visit to Pittsburgh this month will make good changes but that might not happen.

When you feel this sick if you have any concern for the person with the responsibility of carrying out your wishes, this is the time to do it. If I told Dave I want to be buried back in Philadelphia with my son, he would make sure that happened. I don't want that. Going back to the Hep C, I have felt dirty from the second I knew what it was. I have told Dave to have an undertaker cremate me and he is NOT to take home my ashes. It just goes through me to think of this disease and know he would have to do something with my ashes. I know burning would clean away the disease, but to me, it just turns my stomach. Whatever they do with left over ashes is fine with me.

I know there will be people who say he is cold and should not do that to his mother. It's my wishes and it's written here for anyone who doubts that. He knows the second I die my soul will go to heaven and this is just a body it lived in, a dirty body with a horrible disease. He can have his own words with God, he doesn't need an audience to do that.

No I'm not ready to die yet. I hope this next round of drugs will make me feel better. But it's pretty clear today that I'm getting worse and now was the time to add this to my blog for him, for those who may want to judge him for my other son's who I've not talked about this with.