Thursday, November 29, 2012

A New Christmas....

It is already Christmas in Wilmore, KY. I attended a Christmas party on Monday night and it isn't even December yet. This is the first Christmas party I've been to in years! What a wonderful time

Yet, it is Christmas again. To avoid the dread of the loneliness, solitude, magnitude of loss of my family this time of year, I hope my body will hold up for some activities Wilmore has planned. I do want to attend Wilmore's Christmas this Saturday. Such a small town and yet they pull out all the stops to celebrate together. The college has events planned the first two weeks as well. Tonight they're doing "Crimes of the Heart" in the new theater. Haven't been there yet and will be so excited to see it. 

In order for me to do anything, I've had to stay in bed every other moment of the day. People don't realize how much pain I suffer from. When my eyes open until I finally fall asleep at night, the pain in my body is horrendous.  I may push on during the event, but I'm in tears when I'm home. 

If I could wish for anything this Christmas it would be for a Kindle. Said I'd never settle for anything but a good 'ole book, but my sight is dwindling so badly that I cannot read the words anymore. A kindle would help so much. But having money would help so much more. Just making it to the end of the month is so difficult for me. With the cost of medications, gas for heat, electricity, water, rent, etc on a small fixed income, it is next to impossible to get by. 

The thing is if I could wish for anything, who would I wish to? There is no family left in my world. Wishes will have to remain wishes. The needs will have to remain needs.

    

Thursday, November 22, 2012

Just One Question

Will the pain ever go away? I'm the first person to tell another you never get over the loss of a loved one. You merely learn to live with it. Easy to share the wisdom. Hard to live with the pain. When you've lost every member of your family, holidays are horrible to face. Every moment I've been home today, I've cried. Seems like the loss has been more heart wrenching this year than ever before. Can't seem to turn off the pain. 

I've looked in the mirror yelling at myself to "STOP IT!" so many times I cannot count. Didn't help. Sometimes it is better to just cry out the pain.

But that is the problem. A heart wrenching, soul crushing loss as I've experienced over the years just never heals. I've learned to live with it...until the holidays come. It is then the pain magnifies tenfold. 

The emotional agony sets off a lupus flare. Just like dominoes, the cycle begins. 

Oh how I dread Christmas.... 

Sunday, November 18, 2012

Thanksgiving

It is time to be thankful again. Each day I am thankful for small things. Things most people take for granted, I am grateful I can do. Take a shower, walk across the floor, get out of bed. Many days I cannot do these things and on those days I am thankful my eyes opened. 

Do I wish my life was different? Of course I do! I want to be able to get out and walk two miles every day. Instead, I can barely walk a block. I want to be able to go back to school and get a master's degree. Instead I just wish. Why is education so expensive? Life is tough. With a life-long illness, life is so much tougher. 

At Thanksgiving, I think of my parents and my brother and miss them. Thanksgiving and Christmas are family times. Most people envelope themselves in family and forget those who are alone this time of year. They don't want to think of depressing things like sadness, being alone, etc. So they gather together as a family, and close the door on the world. It has been my experience time and again through the years. 

Not with my father. He would search for people who were struggling or alone at Christmas and do whatever he could to make sure they had something or someone. Of course, he didn't have anything to his own name, but whatever he had, he shared. He sacrificed his own small morsels to make sure someone with a child did not go hungry. I know God smiled down on him far more than someone who has an ungodly bank account giving a small gift to an organization at Christmas. 

No matter where I go in this world, it seems people are more reserved, more sheltered from their neighbors. They don't seem to care anymore. It doesn't take five minutes to knock on a person's door to say hi or take them cookies, especially at Christmas. Being alone, it would make a world of difference to me. 

I hope this year will be different, but I won't hold my breath. People are people no matter where you go. In a college town, they clear out and head home. Everyone I know already spoke of heading out of town come Christmas. That leaves me alone yet again on Christmas day. 

Maybe in the future I won't have to be alone on Christmas....if I wish hard enough.     

Tuesday, November 13, 2012

Cardiologist 2

My cardiologist visit went well last week. Thinking back to my experience in Dothan, which was horrible, it can only be compared to night and day. He listened, was informative, and was willing to look past the systemic lupus to explore what was going on. 

The continuing pain in my chest and upper back along shortness of breath could be pericarditis. See http://www.medicinenet.com/pericarditis/article.htm

I've experienced this before from my lupus history. But this feels so different

  He said he'd like to make sure it isn't lupus related, not aortic thoracic aneurysm related, so I'm headed to Central Baptist Hospital on Nov. 30th for the day. There will be four tests performed to determine what is going on. One way or the other, I hope to have answers.

One thing he noticed was my nails. They had started to curl under a bit. He said it was a sign of lung disease. Never smoking a day in my life, he decided it wasn't important until I told him I had lived with a chain smoker (my dad) for many years. I'm also allergic to smoke. Can't stay in the same room. If I'm in a room with smoke for more than five minutes, my lungs close up. Had that experience yesterday. 

He advised me to stay away from smoke...period. 

Systemic lupus has done a great deal to my body. I'm amazed to still be alive after 17 years. When I walked into my Internal Med doctor's office in Dothan, the nurse would always say it is a miracle I'm still here. I feel that way, too. But I know God has a purpose for every day my eyes open. I may not be a great scholar, a person of importance in this world, but I have a purpose. God has me here for a reason every day my eyes open. Whatever He chooses to use me today, I'm His. I am just a vessel. The vessel may be more shattered than it was a year ago, but He uses all vessels. 

Lord, thank you for life.  

Cold Morning...

The cold air settled in after an icy rain yesterday. The weather shut me down quickly. Even though I had a blast running around with my new friend from Wilmore, my body still says, "Take it slowly." The weather, my secret foe, came like an attacker in the night beating what strength I had out of my already pain wrecked body. By the time I crawled into bed, the cold had settled into my apartment. I sit here with frozen hands trying to find the drafty air that torments me in the cold of this room. My joints are swollen, body is in so much pain, yet I have to crawl into the shower and pray I can stand long enough to make it through.

I am so thankful for days when I can have somewhat of normal life...stand in a shower, get dressed, wash dishes. Things others take for granted are golden opportunities for one whose life is limited by an illness that has all but destroyed normal life. So many days have passed where I can barely make it out of bed, sit in a chair because it is too painful to recline or stand up for more than five minutes, etc. 

Today is a limited day. So many things need to be done.... sweeping, dusting, general cleaning. But today if I can stand in the shower and get dressed, I have accomplished more than my body will allow. 

It is for these reasons I cherish moments of small joy...birds in the feeder, neighborhood cat brushing my leg as I get the mail, a surprise note from someone I admire so much. Those small moments are blessings of great joy

 

Saturday, November 3, 2012

Yellow Roses

Today another weather front has moved in. It put me in bed again. So dreary outside. So painful inside. Even Rascal won't come near me today. Sad when you're cat senses the pain you're in!

Today I'd like to unzip my body and crawl out! Be free of pain and swelling. Be able to breathe without sharp pains in my side. 

But I am reminded I can breathe, I can feel, I can get up today and walk across the room. 

Strange what you think about when you're stuck in bed. Yellow roses....I miss my yellow roses. I picked up a pot of nearly dead mini roses last February and nursed them into healthy climbing roses. They were rejects from the pile not chosen for Valentine's day. Being in the reject pile so many times in my life, I've been known to rescue flowers, animals, etc. 

I couldn't transport my yellow rose pot with me to KY in August. It was just too hot and they wouldn't have made the distance. 

On days like today, I wish I had someone to give me yellow roses. Always been my favorite. Brightens my thoughts

I'll just have to plant them in my dreams for now. Winter is coming and snow will come with it. I'm a big fan of snow

Still, I'll always hope for yellow roses.

    

Friday, November 2, 2012

Cardiologist

Wednesday is a new doctor. The thoracic surgeon insists I see him ASAP so I'm scheduled for 12:30. Not something I look forward to doing. Didn't like heart cath the first time. But am having symptoms and with an aneurysm, don't want to take chances. 

It seems all I ever do is something related to doctors, medications, illness. That's why I am so thankful to be included in Bible studies, quilting class, water aerobics among other things in Wilmore. I've finally started to feel like I'm alive again. Just wish my body would cooperate! 

Today I walked to the seminary bookstore to look around. Have wanted to do this for a long time. Afterwards I had lunch at the Chinese restaurant and walked through the dollar store to pick up a few things. Shawnee saw me walking by on my way home. She stopped in to pick up Chinese for her family. I welcomed the ride home at that point. My back doesn't hold up very well anymore. 


Baby steps...I keep telling myself...take baby steps and build up. But by the time I get cabin fever, I have to go further. Then my body falls apart in pain. Today I blame it on the burst of joy I received from the note Kevin sent me. No, Kevin, that's a GOOD thing! 

Note to self: You CAN'T just get up and walk all over town! Baby steps...short distance...go home. Build up. Shawnee may not be there to rescue you the next time.

I found it interesting that the doctor I saw Wednesday discovered I had no flexibility left in my feet. I can't flex my feet or wiggle my toes anymore. No strength to push against force with my legs. He said, "Please tell me you're not driving!" I told him no, but because of the fact lupus has robbed me of so much vision. He said I could now add another reason to the list.    

I don't think much about the pain because I'm in pain all of the time now. Was scolded for that one. Told to be more aware of the pain in my chest area due to the aneurysm. I'd rather just LIVE!

Now I face the dreaded cardiologist. Never met one with a personality, much less one who listened. Hoping this guy is nothing like the ones from the past.  
 

Just When You Need It...

Seems like when something bad hits you from behind, something good always comes around the corner. Today was the good. I was wading through the junk mail and saw an envelope with the yellow "mail forward" sticker attached. Came from my old address. No return address on the outside. My address typed. My first thought was junk mail - trying to get me to borrow money for the holidays. Almost just tossed it aside. 

Being the curious person I am, I opened it, pulled it out, and saw the name on the enclosed card. At the top it read "Kevin Spacey." The card was a very nice hand written note from Kevin reminding me how he remembered the time we met many years ago at "The Iceman Cometh." He made my day

I must have read the card so many times the ink has faded. Somehow I hope he knows those little things make a huge difference in the life of someone who suffers so much physical pain. How I wish I knew something to do to make his world as bright as he made mine today! 

We all need to feel special. Today was my day. It was a rare occasion. Thank you, Kevin!
  

Update since My move to Wilmore, KY

 Update since my move to KY:

It is hard to "change lanes" in the 50's of your life, but worth it for me. My stress level has gone down (except for today when I received a water bill of $61.00 - Yikes! They had tagged me as a leak last month, but no one said anything. And yes I have to pay it.). The hardest thing has been financially recovering from the expenses of the move itself. Seems like I can't get one step ahead since.

My new rheumatologist isn't like my old one. He has no personality, but did seem open to helping with the extreme pain I live in day to day. Change of meds. New expense. 


Today I met with my new thoracic aortic surgeon who will keep an eye on my aneurysm. He is wonderful! Never been so pleased! Not only did he spend time to get to know me, my background, what's going on with the aneurysm, inform me of things I should be concerned with I didn't know, but referred me to a new internal medicine doctor.

 Been hard to find a doctor with no referrals coming from home. The only referral I received was from my rheumatologist. The thoracic surgeon back home said I should google someone. Really? No choice. So I did. Checked them out and then prayed about it for a week until I felt God's leading. God couldn't have chosen a better person. He had a concern today so I'm seeing a cardiologist on Wednesday. To prevent a wait, I'm being worked in at 12:30 at Baptist Hospital in Lexington. Would greatly appreciate your prayers. 
 
Today I learned that someone of my height, 5 '1",  has more concern with an aneurysm 4.7 cm than with someone of 6 ft with a 5 cm aneurysm. He said that is a big risk factor when deciding when to do surgery. Never heard that one before. Also, aortic dissection is a big concern when you've had an aneurysm as long as I have. Aortic dissection occurs when the layers of the aorta tear and separate from each other. Blood leaks everywhere. So add it to the list of 75/25 chance of death if open heart surgery is performed because of systemic lupus. I also learned my 18 years of exposure to second hand smoke (my dad was a chain smoker inside) was not a good thing. So I was told to stay away from second hand smoke and keep my stress level low. Living in Wilmore, it is easier to keep stress level low, unless there is a water leak underneath your apartment and your bill scares the living daylights out of you! ;-)



With all the doctors, hospital tests, illnesses, flares, etc. I've endured over the years, I've learned one thing. You're not going anywhere until it comes your time to leave this earth. So be thankful for each day you open your eyes, able to stand in the shower, get dressed and go about your day. Life is stressful enough as it is. People can make it worse. Just don't be one of those people!

Please keep me in your prayers. Financial expenses look rough this month. Don't have a good winter coat and from the looks of October, will be a necessity (Water leak didn't help). Two more doctor's appointments with co-pays, new meds to fill, hate to see the gas bill - this place has gas heat. Never thought I'd turn on the heat before the end of October. There's a draft in here and if I could ever find it, we'd surely be warmer. As is, we're (Rascal and myself) are wrapped up in blankets during the cold snaps during the day. God has always provided for needs. I'll always stand on that promise.