Saturday, December 31, 2016

Happy New Year

New year's Eve is just another day to me. Personally I am thankful to see 2016 go out the door! Feel hopefully for 2017 bringing anew President. Good riddance Obama!

Raining here with chilly weather. Didn't sleep well last night because of this wacky roller coaster weather. Ready for snow. Doesn't hurt as bad when it snows, but rain kills me!

Thankful or to have a doctor's appointment for a few weeks. Benlysta one week and then doctor. A reprieve from what has become my life.


Sunday, December 25, 2016

Christmas

Today I long to go home. But for me there is no home to go home to. Christmas is the hardest day of the year for those of us who are alone in the world. Death of loved ones takes a hard toll.

I've been sick for two days. Crazy weather pattern caused a flare. This will be another Christmas spent in bed.

Saturday, December 24, 2016

Memories

Last night I watched a movie I hadn't seen before. It was called "Christmas Oranges." Was about an orphan being passed off to another orphanage at Christmas. The owner's brother brought the children oranges every Christmas. Reminded me of my Daddy. Every Christmas from the time I can remember every Christmas my Daddy walked in the door arms loaded with nuts, tangerines, oranges and chocolate drops (for Mama). The older I got, I just thought it odd that this was his choice of Christmas gifts to us. Being a child I just didn't understand.  After all Christmas was for toys and gifts.

Watching that movie last night reminded me of him. I finally understood why it was so important for him to bring his gifts to the table.

My Daddy grew up in a large family during the Depression. They had nothing. Just receiving an orange was a big deal and grateful gift. For him to give us so much more was giving a bounty, overflowing abundance. I'm sorry, Daddy, I get it now.

He's been gone twenty Christmases this year. I miss him more than ever this year. I can no longer eat nuts because they make me sick, but I'd be so thankful for one of his oranges.

Please remember this Christmas Eve not everyone has family. The world has taken a celebration of the birth of Jesus and made it into a family affair. That's fine and dandy for those who have family. But so many of us are alone and this time of year magnifies the loss. If you know someone alone, take time to care.

Wednesday, December 21, 2016

Thursday, December 15, 2016

Oh Joy!

Today I made a bad choice. I chose to eat some nuts. I've spent the last two hours throwing up. Nuts and diverticulitis just don't mix, but I just wanted some. REMEMBER THIS MARY!! Don't eat nuts again!!

NOT fun!

Today has been bitterly cold. Tonight's temp is -3 degrees with wind chill. As usual with block walls inside my place it is really holding the cold. Rascal is under an electric blanket. Bitty is sleeping on top of a heated throw. Who knows where Buddy ran off to! I've called him over and over. Tom is wrapped up under numerous blankets. And I plan to crawl under an electric blanket as well. Finally found Buddy and wrapped him up in blankets as well. These sweet creatures have been my only support system. Unconditional love. Some people don't care for animals. Me? I have a stray cat magnet inside. They know if they come to my door they will be fed, loved, cared for, and have a warm bed to sleep in.

I lost my productive life a long time ago. Most friends left when I grew sicker. And all of my family members died before I became so sick. Many days pass when I can't get out of bed. But there isn't any one to bring me food or water. So I suffer through alone. This time of year makes the loss of my family horribly difficult. I've simply gone numb. If I didn't have those sweet felines to take care of, I'd have no one at all. My family died and left me here alone. Days pass when I beg God to let me go home, too. There are far to many of those days now.

As usual, the cold has caused a lupus flare. I can barely walk across the floor. Taking a shower was a huge accomplishment. Amazing what we take for granted isn't it? I'm so wiped out and hurting I can barely type on the keyboard.

Start a new benlysta treatment on Monday. Still trying to cover the percent that isn't covered by my insurance. And for those who "don't get it," if you have insurance of any kind you can't qualify for the free medicine sites. You're considered "insured" even if it doesn't cover the whole thing. I've been there and done that. I've spent 1 1/2 years paying off that 20% not covered. Hospital bills roll in and expect to be paid. All of the trolls who are commenting and sharing their two cents worth need to stop. If I could figure out how to delete and block you, I would. Do us both a favor and crawl over to someone else's blog. Delete mine. Bullying is not Allowed here...you are causing more stress and pain.

https://www.gofundme.com/Need-Medication


This is Itty Bitty kitty. She found out living with me means being cold inside, too. Gas and electricity cost money. My fifteen medications are going up in January. Soon it will be a choice between medicine or heat.


Friday, December 9, 2016

A Christmas memory

I entered a contest for free books today. They asked us to tell about our most memorable Christmas gift. I shared about the one gift I got the year I turned sixteen.

My family had struggled so much financially that year. I knew times were tough but cutting Christmas? Too hard for me to believe.

Turned out it was the hardest Christmas I had ever spent. My brother gave me a Christmas music record album by RCA. That was Christmas. He had refurbished an old record player for me the year before. I was sixteen and didn't quite get it. Broke my heart.

Looking back over time, I realized what a struggle it was for him to get me the album. I appreciated his kindness even though it was in hindsight.

I still have that album even though the record player is long gone. I have no way to listen to it, nut every year I take it out and remember that Christmas and how my only brother sacrificed for me to have it.

My Mama, Daddy and brother have all passed away and I don't have a family of my own. Remembering those struggles and sacrifices draw me back into the time we had each other at Christmas. If you still have family, spend time with them. Once they're gone, they're gone. And their absence is felt 100 times over at Christmas.

Thursday, December 8, 2016

Doctor Updates

Monday was my eye doctor appointment. The drops she put me on for glaucoma eye pressure hasn't worked. So she switched to another drop. Cataracts are getting bigger so my next appointment in February will be a pre-op one. The Left eye is the worst and it is first in line for surgery. If the new drops don't lower the pressure, hopefully removing the cataract removal will do so. The longer the pressure stays high, the more damage the glaucoma does.

Monday is dr appointment number two. Three month check up from general MD. New things on the list to check.

Then the Benlysta is the third Monday.

I'm so wiped out from doctors and medicine, all I want to do is sleep. Helps deal with Christmas better. No family. No celebrations. No parties. Just remembering what Christmas is truly about. Thankful for peace.

Sunday, December 4, 2016

Christmas List

It's Christmas again. As an adult the child in me wants to browse the 'ole Sears wish book and circle what I want. But that time is gone. No more wish book. So instead I turn to the internet.

Of course I never get anything, but I can still wish.

This year I have longed to own a record player once again. I had one in my teen years, but it was left behind when we cleaned my daddy's house to move him in with me. There was no space at the new place. The player had a nice cabinet built around it. How I enjoyed it! How I miss it!

So this is my new wish: https://www.hsn.com/products/crosley-director-8-in-1-record-player-wcd-recorder/7876499. Crosley 8 in 1 record player with CD in paprika color.

And here is my need Wish: https://www.hsn.com/products/hoover-power-path-pro-advanced-carpet-cleaner/7854218. Carpet cleaner upright. I've had all kinds of trouble with the plumber in my apartment. First the toilet overflowed and seeped through  the walls into my bedroom carpet. A friend brought her cleaner and we did not quite finish. So there is a lingering smell. Having a long haired cat presents having hair balls and throw up spots every other day. I try to scrub by hand, but it just doesn't work. I need an upright so that I won't have to bend over. Once bent over, I may not make it up again! Dr

Third is meeting my goal on GoFundMe. I have to pay 20% for the medication. The rest is covered with insurance. Stress is much harder on someone suffering from lupus because stress causes flares. The stress of worry is not a good thing. This is my last hope lupus medicine. There is no other. After twenty-two years of going on medication that stopped working or  made me more sick than better when using it, I've run through the list. Something as small as $1 to $5 would be most welcome. If I can't keep this medication, I don't know where to go next. Please share the link on your social media page and help me get the word out!

https://www.gofundme.com/Need-Medication

Of course I would be happy with a grown up list as well. Hope you enjoy it, too.

https://m.youtube.com/watch?v=_iEGdwHa0UI

Friday, December 2, 2016

Worth every moment to read!

I ran across this article on Facebook. It was reposted on a student doctor's page. I've read it before and can relate. Worth your time if you have lupus or if you know someone who does.

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

And I'm Feeling It Now!

I went to a school play with a friend yesterday. Just a couple of hours and I was so wiped out. Came home and slept three straight hours. Woke up for two hours and crashed again. Wondering if I'll ever gain any benefit from Benlysta.

I'm curious if there is anyone else out there who has to repeat their story over and over to the same people. Seems like I just repeat why I'm tired or why I'm in such horrible pain. I've learned to watch and see if the person is truly interested before I finish a sentence anymore. Otherwise I just stop mid sentence. Truth is no one will ever know what it feels like to be so limited until they experience it for themselves. Sometimes I feel like no one cares.

Cold temperatures are coming. The pain in my hands is so bad I can barely type. No matter the temperature outside, my hands are always frozen. Seems like the pain starts there and radiates throughout my body. 

I put up a Christmas tree after all. I remembered my Little Bitty Kitty and how she came to me. A couple of years ago this starving flea bitten cat landed on my doorstep. It was as if she was escaping some horrible home. I fed and cared for her, but she wouldn't come inside. She preferred to sleep underneath the neighbor's tree at night. Then one day they cut the tree down. On the first snow day she decided inside was much better than outside. It has taken two years to get her into shape. You'd never know she was the same cat.

So I put up the tree for her. First Christmas she slept under that tree. I felt as though she missed her outdoor one. Took me two days to put it up (takes forever to do anything anymore), but the third day when I awoke and walked into the kitchen, there she was asleep under the tree. Funny the things we do for our "family." 

Time for early bed for me. Just hoping for a better tomorrow.