Monday, January 31, 2011

I knew it was coming

Today I thought the heart surgeon's office would call and say, "Time for cat scan and x-ray of aneurysm." Instead I got "you're a candidate for stent surgery because of the size of your aneurysm. NOT ready for that. I am alone. I get this news and have to deal with it alone. Learn to accept it alone. Could you? No encouragement. Nothing.

He talks to the stent surgeon and I hear back from them on Thursday. Another scan will be performed: a CT angiogram. Then they will do a enovascular repair stent on the thoracic aortic aneurysm near my heart.

http://my.clevelandclinic.org/heart/disorders/aorta_marfan/endovascularaorticaneurysm.aspx


I'm still in shock. I knew the time would come, but I wasn't ready for it today. There are so many things I've wanted to do in life like ride a train, love and be loved, play in snow one more time, move into a house and plant a garden to name a few, but seems I've hit a wall, a road block. You see, with systemic lupus and my condition any procedure, whether it be surgery or a procedure like this puts me in extreme danger of not coming out of it.

I plan to tell the surgeon one thing: if you lose me on the table, don't you dare pull me back. I can think of no worse thing on earth than to be yanked out of Heaven for the loneliness and pitifulness of this world. I'd hate to have to hurt him.

The past year when I had so much trouble with the office because I was being harassed by a resident, then harassed by the office, I had no one to turn to for help. Suffered. Stayed inside. Cried for help. None came. God gave me the strength to endure the pain and agony, but people turned away. Dear Lord, please don't ever let me be that way. Never let me turn my back on someone who is in dire need if I have the means to make a difference. How I wish I had someone to help me out of this prison of four walls, but no one came. My heart still longs to be released from the bad surroundings I endure each day. I pray God will send an angel to help.

When someone tells me they need help, Lord, give me strength to help them or find the means to help.

Oh Lord, give me strength to face the coming struggles. Last Friday I was told the pressure in my left eye was very high. I've been having more problems with my vision the past year. Lupus has caused so much damage. The test he performed twice affected my eye and caused so much pain for three days and blurred my vision more than usual. I am possible glaucoma because my mother had it. Have to go back in six months.

Does it ever end? Does anything good come? When?

Monday, January 24, 2011

Sick Sick Sick!!

I spent my birthday alone. Was a sad day to turn 50. Did go to bingo Thursday night since Sandy took the night off. Didn't win anything, but did get free cards.

Saturday Sandy took me to Boondocks in Panama City, FL to eat. Was so nice to go. By Saturday morning I was so sick with the crud. We wandered through the libraries in FL, picked up used books in their bookstore, and headed to Boondocks. My spinal stenosis flared badly and I had to stop at Walmart to get icy hot to cover my back. I could barely walk. Still having problems walking. If it doesn't get better, I'll be calling the doctor specializing in this one.

I'm sick of doctors. Just saw my internal doctor last week. THEN get sick. See my eye doctor this week to see if the plaquenil has deposited on the back of my retina. Also to check on lupus damage to my eyes.

A lady who works with Sandy lost her son a week ago. He had lupus. He decided not to take meds or see the doctor anymore. He developed pneumonia and lupus attacked his lungs leaving two holes. He died at 28 leaving two children behind. I had reached the point taking 20 meds was too much. The reality hit me in the face last week. He was diagnosed a year before. When I asked my doctor if I could come off these meds, she panicked thinking I was serious. She said, "You want to live, right?"

Hard to someone else to understand when they don't suffer. I just wish I had a way of moving out of this horrible, unsafe apartment complex. Sunday the hispanic guy caused trouble. A week before he almost burned the apartments with a grill. Noise is unbelievable. My doctor said I have to move or my health will continue to plummet. How? It costs money. Go where?
NO FAMILY.

I still can't walk outside and get fresh air. Too unsafe. Oh Lord, please rescue me.

Sunday, January 16, 2011

Just wondering

I've been watching the Golden Globes. So many people given so much. I just wonder how many have given back outside of their field, helped others in need outside of their "charities". How many people have they passed by knowing a great need was there. Shrug it off. Justify it with "well I worked for it." How can you justify multimillions of dollars for a movie role? How messed up is this world?

Then I look around the church. I see business men who attend just to make contacts so that they can make more money, women who join to climb the social ladder, stepping on those who don't measure up financially or in their eyes socially because they didn't marry into the right family or wasn't born into the right family. How much to they give back, help others in need outside their charities who pat them on the back. How many people have they passed by knowing a gerat need was there. Shrugged it off. Justify it with "well, I worked for it." Sounds familiar, doesn't it?
How many donate to the church in honor or memory of someone just to see their name in print in the church newsletter because it makes them feel good? What's the difference between them and the celebs? I don't see it.
I thought Christians were suppose to be in the world, not OF the world.

That is why so many people are alone in the world, have no one to reach out to in time of need, lonely, afraid to ask for help. They get more judgement from the church congregation than living in the situation they're in. I remember many days leaving church in tears because that short period of time the people made me feel less of a person, not worthy because I was not in their "social" class, treated like a nobody. I never once felt the spirit of God or love there.

I've learned a great lesson over the years. My faith is not in people, but in God. People have failed many times over. God hasn't. Heaven help me if I see someone who is in great need and I have some way of helping that soul and not doing it. I hope others who read this will do the same.

Tuesday, January 11, 2011

Birthdays

Hard to believe....50th birthday is only a week away. January 20th. It should be a milestone. I hear once you reach 50, you're not as stressed about life. I hope that holds true.

Thursday, January 6, 2011

Need of prayers

I found out last week my aortic thoracic aneurysm doctor has been diagnosed with pancreatic cancer. They gave him three months. He's a middle aged man, far too young. He's a great, gentle doctor. Specializes in thoracic aortic aneurysms. My fear of the surgery left thanks to him. While we're still in a waiting game for it to grow another .3 cm, I accepted the situation. Felt at ease knowing God sent me the right doctor. When I heard of his diagnosis, fear came flooding back. I'll never understand why someone with such a gift as his, a true purpose, a wonderful family is devastated with cancer. Prayers go up for him and his family.

Blessings

So many blessings over Christmas. How do you save them up to last a year?? Visits from people I never see but once a year? How do you cherish them for a whole year? I'm so thankful for the blessings.

I'm thankful I was able to get out of bed this morning and walk to the kitchen. I'm thankful I could sit at the computer longer than fifteen minutes. I'm thankful I can think more clearly today than I did yesterday. I'm thankful I could stand in the shower today without falling over (major milestone!).

I'm thankful to have a roof over my head, a place to sleep at night, a loving cat who keeps me company. Still, my goal is to move this year to a safer place. Being stuck inside 90% of the time with no way to go searching for a new place makes it hard. Knowing someone who knows someone who has a place would be easier. If someone knows of a place, please let me know. I long to be able to walk outside my door, sit outside in the fresh air, take a walk and feel safe again. As it is, I only leave the apartment when I'm going to the doctor or grocery store. Praying for an open door, direction, help.


I'll be 50 on Jan. 20th. It is also the 50th anniversary of the inauguration of John F. Kennedy. I keep thinking I've lived four years past my brother. So many thoughts run through your mind when you're faced with a milestone. Unlike so many who have big birthday parties, I'll go out to dinner and that will be it. I would prefer snow! Haven't had a birthday party in many many years. Somehow it doesn't matter anymore. Having a friend who sticks by you through the toughest times of this illness means more than having a room full of people who never call or visit you gathering for a party. I'm thankful for peace.

was blessed with a gift of staying at the beach for two days at New Year's. The healing waves did their job! There is something so powerful and healing in the ocean. Maybe it is because I feel so much closer to God there. Sometimes I wish I could live on the beach.