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Wednesday, March 25, 2015

Bad Night

Last night I experienced another horrible lupus attack. I woke up with abdominal pain and swelling and a fever of 103 degrees. It was at least two hours before the fever subsided. When it did, I pulled myself up and sat on the sofa in hopes the pain would go away. So bad! I cried for an hour.


When Little Bit heard me crying, she crawled into my lap and purred in order to sooth me. The best part about this is she has never sat in my lap before. It was the first time.


When I was able to crawl into bed again, Rascal crawled under the blanket and nestled into the small of my back. It was soothing to me to know he, too, cared.


I just can't help but wonder why people can't be as loving and kind as animals. Is it because they are so self absorbed that they won't stop and listen for those who are hurting? They discuss the situation instead of helping the hurt.


I have been weak and bed bound since last Tuesday night. The heart cath took more out of me than I realized. I haven't seen another person. No one locally has called to make sure I am still alive. It scares me to know if something happened to me, no one would find me for a long time.


I have thought about getting a medic alert system where you can push a button when you need help, but with the increase of my medication costs, I can't afford it. It would be a comfort to know someone was watching over me.


Even though the heart cath is over, the questions are not. So I'm back to see the cardiologist and pulmonologist in April. I'm still having chest pains and shortness of breath even while I'm in a seated position. My nails are curving over even more. No questions were answered in the multitude of tests.


I'm still feeling severe pain in my abdomen. So afraid to eat something, but know I have to just to pad my tummy when I take the meds at night. Still weak, but have to take a shower. The cold air comes back tomorrow. I know there is always a cold snap before Easter and this is it. When I stepped outside on the porch this afternoon to feed Buddy and Tom, I realized how warm it was. Inside I'm still under an electric blanket, wearing long sleeves and gloves. It physically hurts to be cold.


I won't be able to withstand another cold winter like this past one. I won't be able to withstand Thanksgiving and Christmas alone again. As bad as Alabama was, I did have someone coming in to help me twice a week, was able to keep my fridge full, and never had to spend the holidays alone. I had a doctor who went above and beyond to make sure my medical needs were covered. They say hind site is 20/20. In this case it was. If I had the money to pay for a moving company, I'd go back. Until that miracle lands in my lap, I'm stuck with being alone, struggling with the smallest things like getting myself to the grocery store and dealing with doctors who don't seem to care, literally freezing to death.







Thursday, March 19, 2015

RECOVERING

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.



Friday, March 13, 2015

Medical Tests Update

Cardiologist found something else in my test. She is doing a heart cath on both sides Tuesday morning at St Joseph East Hospital in Lexington. Another doctor will stand by in case stints are needed or other procedures done. May be an overnight thing depending on what they find. 

Am I scared? You bet! I have four days to adjust to this news before it happens. Once it sinks in I'll be okay. Just the shock of it all. 

Irony of irony, I found an error on my paid in full life insurance policy last week. They had not changed beneficiary since my brother died. I had changed it, but they failed to do so. I received the form to correct it yesterday and today I had to walk to the college to find a notary public. Now the college has updated most of their buildings with elevators, but not the Administration building. The woman I needed to see was on the third floor. I walked a mile to the college and then had to climb three flights of stairs and turn around and do it all over again. I could barely breathe just walking to the college. Yes, I agree on the diagnosis: there is something wrong with my lungs! Thank you so much, systemic lupus! It was hard enough walking on numb legs and feet in the painful rain!

I thought about the kids taking their finals and preparing to go home for Spring Break. All I wanted to do was go home, too. I wanted to pack my bags, catch a bus (like I did back then), and go home. I wanted to walk into the back door, smell my mother's southern country cooking, sit at the table with my mom, dad and brother for supper, and crawl into my old bed where I felt safe and secure. No matter how much we struggled, no matter how much we fought, how many problems to overcome, home was home. It was a place where I could walk into the door and feel "AHHHHHHHH!" as the problems, struggles, bullies, hurts all rolled off my mind and body and out the door. It was home. And I miss it terribly. 

As I walked back home I listened to some music I downloaded from a cd.  It was the Peasall Sisters. The one song that deeply touched my heart was this one: "Where No One Stands Alone"

https://www.youtube.com/watch?v=Tg1CyWSJ7E4

When I arrived back home with dreams of collapsing into my bed, in hopes of sleeping, letting go, etc., I had a message to deal with instead. Cardiologist office calling with the news. Oh joy!

That song could not have been more appropriate. 

LYRICS: Once I stood in the night with my head bowed low
In the darkness as black as the sea
And my heart was afraid and I cried,
Oh Lord, don't hide your face from me.

Hold my hand all the way, every hour, every day
From here to the great unknown
Take my hand, let me stand
Where no one stands alone.

Like a king, I may live in a palace so tall
With great riches to call my own
But I don't know a thing in this whole wide world
That's worse than being alone.

Hold my hand all the way, every hour, every day
From here to the great unknown
Take my hand, let me stand
Where no one stands alone...

I don't live in a palace or have riches this world says is so important to have. I stand alone where this world is concerned. So I turn to God, the one who loves me no matter what, who comforts me when I am afraid, so sick I cannot lift my head, and I crawl into His loving arms. He listens. He loves. He shows His power through my frailty. I feel His hand in mine. No matter what happens with my heart and lungs, I know whose hand I hold and He will bring me into a new home. His peace is overwhelming. 

I'm getting there. Acceptance is hard especially when you don't have a human being to just listen. But I feel peace and know where it comes from. I am so thankful for that peace. 






 

Thursday, March 12, 2015

Waiting

As with all tests, we wait. I called the cardiologist office. She has not checked my test. May be Monday before I know. All I know for sure is I will have a right heart cath and she does those on Tuesdays. 

The chemicals from the test on Tuesday has made me terribly sick. Very nauseous. Painful. Just a reaction. 

One day at a time.

Monday, March 9, 2015

Another Test Day

Tuesday is stress test day. Have to be at the hospital by 9:00 a.m. Since I have problems walking (neuropathy/nerve damage in both legs and feet), they will do a chemical stress test. I've had one many years ago and hoped I'd never have to have another one. But the cardiologist wants to see if there is any damage on the left side of my heart. She doesn't want to do a heart cath on BOTH sides if she doesn't have to do so. Right side is a given. After this test, we will know if she will do both sides at once.


I have never been a fan of medical tests. They scare me. You never know what kind of reaction you'll have until it is all over. As for myself, I'll have to deal with the side affects alone. No one checks on me. I have no choice but to be strong and deal with all of it.


Thankful the sun has come out and melted most of the snow. However, rain is coming in tomorrow. With the rain comes the pain and sometimes lupus flares. Add to this the chemical stress test. Oh I am so ready to be done with all of this.


Doctors don't have a clue as to how hard it is to travel back and forth to appointments, tests, etc. They don't experience it. Just wish sometimes they could put them all on one day instead of having to go back and forth.


This weekend I read an obituary of a lady who was well known in my hometown. She suffered from MS for years. She was a teacher, a writer, a wonderful lady. In her obit they said this, " As a courageous fighter of a crippling disease, Dianne was known by her friends and family as one of dignity, grace, and southern charm."


She was indeed a lady of dignity, grace and southern charm. I can only hope to be described so lovingly.


She reminded me to keep fighting no matter how hard it is to deal with a crippling disease.



Thursday, March 5, 2015

WINTER WONDERLAND PART 2

So very thankful for a friend who helped me get to the grocery store Tuesday night. What a difference it makes not to worry about whether there is food in the house during a snow storm.


Yes, indeed, another KY Snowstorm. Tuesday we had rain and 60 degree weather. Temps dropped quickly yesterday and we woke up to snow snow and more snow. Already have 14 inches on the ground. It is still snowing. Our predicted numbers are up to 20 now.


Temperatures are suppose to drop to -1 tonight. Not counting wind chill.


I can't afford the current electric and gas bill. GEESH!!!


Funny thing is temperatures are suppose to rise to mid 50's next week. Maybe we will be on the way to Spring.


This has been a terribly hard winter in Wilmore. With it has come brutal pain and suffering on this lupus body. I'm thankful I don't have to do the chemical stress test this week with the pain already so bad. I'm also so glad I don't have to do the heart cath while it is so cold.


I tried to rake off the front porch with my snow shovel this morning, but the weight of it was just too much. If the mail makes it through today, they will just have to do the best they can here. It is just too much for me to handle.


Little to no sleep the past few days. With temperatures going up and down and the barometric pressure beating up my body, I just can't rest for pain. I hope to curl up and sleep today now that it has decided on one temperature. With a heated mattress pad, sheet, fleece blanket, quilt and electric blanket, I hope the warmth will reduce the inflammation in my joints thanks to the recent lupus flare. I'm exhausted! (Add two cats to the mix of blankets and you get more warmth!) I'm sure worry of paying for the heating bills does not help with stress and the stress is keeping me awake as well.


Not much else can be done around here. Just too cold to move around in the Icebox apartment. I miss my borrowed heater. It worked like a charm.


Suppose to be in the mid 50's next week. Come on spring!







Sunday, March 1, 2015

Winter Woes

Spring is just a few weeks away. Still have snow on the ground here. Still cold. My borrowed heater went back to its owner last week. I am back to wearing a coat and gloves inside. 

A friend said her electric bill is over $300 this month. I am terrified to get mine along with the gas bill. Terrified!! .  Even though my income has not gone up, the cost of living, meds, heat, other utilities, and food have. Not sure I can just juggle food and meds this month.

March is here and another test a week from Tuesday. Afterwards comes a heart cath, return appointments and MORE medication I cannot afford. 

Tired today. Tired of hurting, struggling, surviving. But I go on. One day at a time.

Update - Electric and gas are $200 more than normal. YIKES!