Thursday, March 19, 2015


I'm in recovery mode since Tuesday. It was a long day! Had to wait a few hours before the heart cath. Once they took me back, it was a Laurel and Hardy episode. They prepared me for the procedure while the doctor could not be found. Pretty bad when they have to page the doctor over the intercom to show up!

They gave me the medication to relax me way before the doctor arrived so I felt everything. The medication had already worn off. I told them, but they did nothing but proceed.

She did two incisions: one for artery and one for vessel. Looked at the pressures in the right side and searched over the left side for blockages. Pressures were okay. No blockages. I guess what she thought she found in the previous test was not recognizable once they went in.

Once I was taken back to the room, I had to lie still for over three hours. Lots of noise around kept me from resting. My mind just raced with worry. Close to the end of the the three plus hours, the cardiologist came in to tell me the results.

Like all tests, if it isn't A or B, it must be C. In my case that means lupus damage and nothing they can do about it. My nails remain clubbed and will always be so. I will have shortness of breath every time I try to do anything. Walking will continue to be an issue.

Before I headed home the nurse gave me instructions.

"You must have someone stay with you for 24 hours."
"I don't have anyone to do this."
"Be sure to take the phone to bed with you. Watch for swelling or bleeding in the incision. If it happens, call 911 immediately. You can bleed out from the location."

So did I sleep? Nope. I was afraid to do so since I was alone. Besides it hurt so terribly much I could barely get on and off the bed.

It has been a restless two days. When I turn over or bend over, the pain is pretty bad. My mind is still restless and I feel stressed out.
The rain has come in and mixed with the cold temperatures to cause my joints to swell and the pain to be intense. Thus is the joy of having lupus.

The hardest part of dealing with this horrible disease, despite medical tests, multiple doctors, multiple meds, painful suffering, has to be doing it alone. I never see another person. Rare when someone calls to check on me (unless it is a friend in another state).

I'm tired and worn out just wishing for a normal life. Instead I'm given illness, loneliness, and struggles.

I know we all have our struggles, but having struggles with a chronic debilitating disease makes it so much harder. So is dealing with people who don't care enough to listen.

Oh Spring, where are you? Tomorrow is the first day. It is suppose to be 54 degrees here which means 44 degrees in my apartment. This winter has taken a harsh toll on my body, my mind and my spirit. I keep looking through the clouds hoping for the warmth of hope.

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