Friday, November 29, 2013

Doctor Runs

My doctor runs start Tuesday afternoon. Thoracic surgeon gives me the test results. Then at the end of December I see a new rheumatologist. I can hear the $$$$/medical bills adding up again. Stress is part of medical expenses. Stress also causes lupus flares.

While most people are spending money on presents, I'm sitting home in the dark. Since it has been terribly cold here, my gas and electric bills will be going up. Looks as though this will be a minimal Christmas year. If someone asked me what I wanted to Christmas, I'd have to answer this: "To not be worried about medical expenses!"

 

Wednesday, November 27, 2013

The Night Before Thanksgiving

Tonight and tomorrow families will gather together. Thanksgiving. I have fond memories of my mother's cornbread dressing. Unfortunately, she threw everyone out of her kitchen and didn't pass on her recipes. I miss that dressing.

Makes me sad to be alone at the holidays. Life is hard enough day to day when you're sick and disabled. Being alone makes it so much worse.

Picked up the cd of my cat scan. Hoped to find the test results on there, but they haven't been read yet. So I'm stuck waiting until next Tuesday for my results. Picked up and forgotten for now.

Took a walk in the cold and snow this evening. SO crisp and clean! Wilmore had a little traffic, but was still quiet. I walked three blocks. That's major for me! Had taken my camera so that I could take photos of Asbury in the snow, but my battery died. I need a new camera so badly. This one is being held together with duck tape. Pretty sad really.

Baking some pumpkin bread for tomorrow. Going to the Potter's Inn B and B for lunch. Was a small group last year, but this year it is turning into a huge one. I'm not good in a crowd of strangers. Maybe I can get lost in the crowd.


Tuesday, November 26, 2013

And the Test is Over!

My cat scan went well. VERY nice people where I went! VERY nice person took me for my appointment!

When I lay down on the table, I looked up to see a beautiful picture of horses - Calumet Farm in Lexington  at sunrise. SO beautiful! So soothing. More places need to do this.

Went to Susan's grand daughter's kindergarten Thanksgiving play afterwards. Oh how I miss teaching! The kids were wonderful. So sweet. Some didn't have parents there and that broke my heart. There was one boy who stood alone afterwards because he had no one to run to and be loved.

Had lunch out - what a nice treat! I hadn't eaten anything since last night (fasting test).

It was a wonderful day even though they were searching for more aneurysms and lung nodules and checking the size of the one near my heart. God does turn bad things into something good.

Won't find out the results until next Tuesday. Doctor's appointment then. So once I pick up the CD of the scan tomorrow I plan to forget about all of it until then.

Monday, November 25, 2013

CAT SCAN TUESDAY AND UPDATE

My cat scan is Tuesday. Time has been moved up. Have to be there by 9:45 a.m. so I'm assuming it will be earlier. They will check the size of my growing aneurysm near my heart, look for other aneurysms throughout my body, and check the size and growth of the nodules in my lung (something I didn't know about until a couple of weeks ago).

The weather is suppose to be horrible Tuesday - icy rain and snow (good stuff!) later on. Not the best day to be out and about.

Good thoughts and prayers are appreciated. I see the thoracic surgeon the following Tuesday.

I'm still in pretty bad pain today after yesterday's accident. Still have a knot on my head and it hurts to even lay it on a pillow. My back and shoulders are really painful. I also woke up with sore tonsils and an ear ache. Just seems like I'm getting hit in all directions right now.

I truly don't know how anyone goes through life without faith in God. There is no way I would have made it this far without Him.

Sunday, November 24, 2013

BAD Weekend!

What started off as a good weekend ended up pretty bad! The good part took place Saturday morning when I attended a one day retreat. It was inspiring and fun and so much needed.

When I arrived home a few hours later, I was throwing up and experiencing diarrhea again. Horribly sick! It finally subsided by midnight. No clue as to what keeps causing this. Seems to run a three to four month cycle.

Then this morning I sat down in my new glider rocker and it turned over with me. I hit my head on a table behind it. Have a huge knot on the back of my head! It was so painful and scary experiencing this alone. I just lay there and cried. Waited for strength to pull myself up again. Hit my neck and shoulder pretty hard as well.

Did I go to the ER? No. Why? Because everyone I knew to call were in church. No one would have answered their phone. So I cried it out, took ibuprofen and put ice on my head with a flector patch on my shoulder.

Checked out the chair later in the day and it appears it tipped back too far because of the way the base was sitting. I wasn't going to let it get the best of me. I turned it over, checked the base and readjusted it. Afterwards I sat down carefully and rid  myself of the fear. Problem is every time I get up Rascal crawls into the chair. We have arguments as to who owns it.

The swelling has gone down, but I still have a pretty big knot on my head. It hurts still. I was hit hard this weekend in the area of getting sick and having an accident. The worst part of all of this is being alone and suffering. I am so tired of dealing with all of this alone. That goes for dealing with the holidays alone, too.

Sometimes life is just too hard.

AND Tuesday morning I head out for my cat scan. They'll check the size of the aneurysm near my heart and search for others. They will also check on the two nodules they found in my lung.

Keeps getting better and better!

Friday, November 22, 2013

Tuesday, November 19, 2013

WISH LIST

I don't normally get Christmas gifts since my family has passed away. Still it is fun to wish! The only thing I couldn't PIN was enough money to pay my medical expenses and not struggle through the new year.

http://www.pinterest.com/maryjc83/wish-list/

 

Saturday, November 16, 2013

A Friday Night

Went to dinner with a friend last night. We tried a local place in Wilmore. I was amazed at how abandoned the streets looked so early on a Friday evening. It almost looked like a ghost town. Since I'm on the other end of Wilmore and am unable to walk far right now (actually, I can't walk down the road right now!), it has been a long time since I've walked downtown at night.

We sat and had dinner together. SO thankful for the company. It had been a week since I've seen another person. One of the side affects of systemic lupus is losing friends. When people find out you're sick, they do several things: walk away in fear they might catch it, judge you as a lazy person, get tired of you quickly. No one wants you to slow them down. I've been left in the dust many many times by people who ask me to do things and then leave me by walking too fast (I walk slowly since I've lost all feeling in my legs below the knees and feet).

It is a rare gift to find one person who treats you like you're somebody. I'm thankful for that gift last night. Not much on talking. Think it comes from being alone most of the time. But I do listen and that seems to be the one gift God uses.

I spent most of the day in bed today (Saturday) because I felt so bad. When I finally was able to sit up, I heard the sounds of happy people coming through the wall next door. They always invite people to dinner on Saturday nights and it goes on forever. The only affect it has on me is sadness - being alone in the world is awful! Hearing the sounds of a family next door, one I barely cross paths with, just makes me even more sad.

Holidays are coming and they are focused on families. No one seems to reach out to someone who is alone anymore, not even in Wilmore. If only people would step out of their comfort zone and reach out to those who are alone, especially at the holidays, they would make a real difference in someone's life. Just look around you.

 

Thursday, November 14, 2013

TIME PASSES

I noticed old friends my age are starting to lose their parents. Hardest thing in my life was losing my parents and my only brother. I was young. My mom died two days before my 24th birthday. My dad and brother died within two years of each other. I had turned 35 when I lost my dad, the last member of my family.

Now those who are my age are losing their parents and experiencing the pain involved. I can tell you that you never get over losing someone. You only learn to live with it as time passes. I still break down missing my family even after all these years.

Hard thing was I didn't have anyone to grieve with me. I did it alone. Made life even harder. But I've learned to live alone, suffer alone and endure. Still doesn't make life any easier.

I believe losing my family when I was young left some major scars on my heart. As I've said before, life is hard enough without adding more pain. When you're suffering physically, emotional pain is just icing on the cake.

----------------------------------------------------------------------

Still not able to go outside. It has been a terrible lupus week. Need to get some things, i.e. needs, but can't go past the door. Thank goodness for Rascal. He has been my constant companion. No matter how much it warms up outside, we're still freezing on the inside. He's curled up in a blanket and I'm doing the same.

 

Wednesday, November 13, 2013

STILL Flaring and Other Concerns

Still flaring! Seems that lupus won't leave me alone since the rain came through. Snow I can handle. Rain, no way! It has been a slow moving day. Accomplished two things and am thankful I could. But the cold has really pulled the rug out from under me. Still wishing I had a fireplace, but that darn fireplace never magically appears! Can't afford to turn on the heat.

It is COLD in here! Has always been drafty. Rascal woke me up last night searching for body heat. When the temps drop to 22 degrees, time to cuddle. Wish I could find the spot where the wind blows through, but haven't been able to do so. I surely can feel it when the wind blows outside. 

Thanksgiving is coming in two weeks. A family holiday. No funds to buy food for Thanksgiving here. Bills are paid and hopefully have enough food for the month. Worried about Rascal's food though. It is going fast. Would rather make sure Rascal is fed than me. I can endure. He can't. 

Sometimes I wish I could pull the covers over me until Thanksgiving and Christmas are over. No money. No family. No reason to celebrate. The only thing I have to look forward to is a cat scan and two doctors' visits. Oh joy! The expense alone will wipe me out. 

Systemic lupus is an expensive illness. My first rheumatologist told me this eighteen years ago. He was absolutely right! So do I buy food to stay alive or choose the medications that are keeping me alive? Do I sit in the dark, dress in layers and stay under a blanket all day or somehow afford to turn on the heat? These are the reasons I have to choose needs above wants. $800 a month only goes so far. 

Still there is hope. There is ALWAYS hope. God has never let go of me and I am truly thankful! Life is hard enough without hope. I will hang onto the hope God has given me and look forward to tomorrow.

Tuesday, November 12, 2013

BBBRRRRR!

It is now 29 degrees outside! Suppose to drop to 22. Even though this place is so cold, I'm thankful for the roof over my head, blankets and warm clothing! Would still LOVE a fireplace! Have the space for a faux fireplace, but can't afford one. Wish this place came with a fireplace! :)



When I awoke this morning, there was a dusting of snow on the ground. First OFFICIAL snow! Had flakes last month, but nothing stuck then. Of course, when the sun came out the snow melted. Some still remains in the shadows. Hoping this is a sign of a good snow winter like my college days.

The temps are going back up again by the end of the week. Attacks my body terribly! Lupus flares are going up and down! I haven't been outside the door since Saturday. Dishes sit in my sink. Things are left undone. But I'm thankful to open my eyes in the morning.

Today was beautiful! Thank you, Lord, for snow!

 

Monday, November 11, 2013

A Cold Winter's Night

No, it isn't winter yet, but the temps are dropping fast outside in Wilmore. The high is suppose to be 39 degrees tomorrow. The plus side - snow predicted! Not much accumulation is predicted though. Still beautiful!

If we could skip the rain first, that would be wonderful. But the rain started falling already. I could feel it coming when the pain in my spine was intense. Cannot stand for more than five minutes! It would make perfect sense to crawl into bed right now, but I'm like a child at Christmas. I want to see the snow fall!

Rascal is curled up in my chair on top of a fleece throw. He's happy. But I'm in pain,  severe pain, from this drastic weather change and the entrance of rain.

Today was not a day of accomplishments. It is so hard when you can't stand for very long. Nothing gets done!

Praying for a good night's sleep in spite of  the rain.

Saturday, November 9, 2013

An Evening Out

Went to dinner with a friend last night and out to hear the Lexington Brass Band concert. It was Artist Series at Asbury University, my alma mater. Beautiful! Soothing! Long! We left at intermission because it was so long.

When I was in college, we use to dress up for Artist Series. Last night I didn't see one student dressed up. Sad indeed. It use to be a shining opportunity, a date night.

I wonder if the school still has Brother/Sister halls, Secret Brothers and Secret Sisters. My most favorite part of Asbury was just before Thanksgiving when the brother/sister halls would join for a Christmas party. There you would find out your secret brother and secret sister. I remember our hall standing in front of the dorm serenading us. They were standing in a bank of snow. Afterwards we would join in for a Christmas party. During Secret sister/brother, you'd receive mystery gifts. That night the secret would be revealed. They weren't fancy gifts - simple things like a huge brown bag of cheese popcorn, cards, etc. My most favorite memory!

If the college doesn't do this still, these kids are missing out! There was something so special when the guys would serenade us. When the guy's dorm had a fire drill, they would surround our dorm and sing. Such a beautiful time. So very very thankful I went to Asbury thirty years ago!

As I sat in the concert last night, I found myself looking around at all the couples, seeing wedding rings shining from the musicians' fingers. Then special Asburians who returned to perform would be introduced as "This is so and so. They met their wife as Asbury."

I kept sitting there wondering what was so wrong with me. Why did I end up alone in the world? The nicest people I've ever known I met at Asbury. Yet it feels odd to be back in the chapel in those horrible seats still wondering what's so wrong with me.

Every year I pray I'm not handcuffed to another Thanksgiving and Christmas alone. Those prayers haven't been answered for me.

And I still wonder - what's so wrong with me? Perhaps my mother was right when she said I'd never be good enough. I've lived under her harsh words all of my life. Did she know what she was doing? Probably not, but her words have destroyed me inside on how I see myself. I can get over any past incidents, but my mother's words are something else.

Thursday, November 7, 2013

Finding My Hope

http://myhopewithbillygraham.org/

Worth taking time to watch.

Coming Soon: Chance of Snow/Christmas Wishes

How can a woman as old as I am be so thrilled about snow? When I checked the weather forecast, it predicted an 80% of SNOW Wednesday and 60% on Thursday. Woo hoo!! Snow in November! So excited! Joy joy joy!

Snow doesn't hurt as badly as rain and it is far more beautiful! The air is crisp and clean. Easier to breathe.

Since we've "fallen back" on time, it gets dark even earlier here. Never has bothered me to have short days. As long as the temps are cooler, I'm happy.

Yesterday the wind was high. I opened the window to hear the leaves rustling outside. The colors came in late and now they're on the ground. Still beautiful! One of my most favorite things about living in Wilmore is having four seasons. So nice to enjoy the Fall.

Was thinking about Christmas today. Even though I'm alone at Christmas, I still make a point to decorate. Love the lights. Was remembering my youth when Sears use to send out a Christmas catalog each year. I'd grab it first and circle all of the things I wanted. Of course I never did get what I wanted, but it was fun to dream. Now "wants" have turned to "needs." But if I could go back in time and open the Christmas catalog today, I'd make my "wish list" like I did before. But I'd have to add a few needful things as well:

Want - glider rocker. Can't beat this for someone with back problems

Want - a 5ft folding table I can use for crafts.

Want - a stand mixer.

Want - a flat screen tv.

Need - Fancy feast canned tuna and cheese cat food for Rascal and Fancy Feast dry Salmon. Litter.

Want - a round bed for Rascal to sleep in at night.

Need - Funds to pay for increasing medical costs. It reaches the point I have to choose food or medications.

Need - a dryer. Mine is on its last legs.

Need - Peace and love. No price tag there!

Need - encouragement and friends who stay even when I'm so sick I cannot function.

Need - to be pain-free and have a life outside these walls.

Amazing how my "wish list" has changed over the years. Just like my youth, I know I won't get the things on the list, but it is fun to wish!

 

Wednesday, November 6, 2013

OHHHHHHHHHHH THE PAIN!

The pain has returned with a vengeance! Rain is coming in and temperatures will fall once again. With this weather pattern comes swollen joints, a fever, and extreme fatigue. Was hoping I had finally licked the lupus flare, but with the barometric pressure going up and down, I've returned to pain and bed rest.

Sometimes living with lupus is more like suffering with pain. Stress doesn't help it either. The one thing my rheumatologist in Dothan said was "avoid stress!" Doesn't take much to set off a flare.

Having a hard time breathing today as well. Will be glad to get the cat scan over and meet with the new thoracic surgeon to find out about the lung nodules. Wondering if this is a symptom.

Want so much to live a normal life, but when you have a chronic disease like lupus, you're thankful for the small things. You never know what the day may hold.

I'm exhausted just from recording this entry. Time to return to rest once more.

Tuesday, November 5, 2013

Human Kindness

I've been washing clothes by hand since my washing machine finally died two months ago. Today I received a brand new washing machine from a kind soul - someone who did not want to be known. Human Kindness. How very grateful I am for this washing machine! I was so happy I did two loads of wash! After putting back up my clothesline late last night, I hung out clothes on a warmer, sunnier day than we've had in a while. They smell so good with fresh air and sunshine.

No mopping up the floor after the old machine flooded it. No more stress in that area! To whom ever blessed me with this machine, THANK YOU!!! What a huge difference you made in my life.

If you ever watch "America's Got Talent," you may be familiar with Joe Castillo, the sand artist. I was blessed to see him in person when my university sponsored him. I ran across the following post with his "Human Kindness" art. A little long, but well worth watching.

http://vimeo.com/76625405

I also ran across this page that shows human kindness in progress. Hoping those who run across this post will be inspired to be kind to others.

http://www.world-actuality.com/index.php/people/671-these-20-photos-are-going-to-make-you-cry-but-you-ll-see-why-it-s-totally-worth-it?fb_action_ids=214913425349327,214910035349666&fb_action_types=og.likes&fb_source=other_multiline&action_object_map={

 

Monday, November 4, 2013

STRESS!!

Today I find out my medications are going up. So it looks like I'll have to choose between food and which meds I can afford next year. Too bad I don't live in a house that's paid for. Would be less money going out and I could pay for the much needed medication.

STRESSED! And no stress is not good for lupus. Stress is today's word - too much stress.

Started my day heading outside to hang out some clothes and discovered my clothesline was taken down by my neighbor. I had to go next door and ask him why and where he put it. This is the second time they've done this and it really ticked me off. Why can't people ask before removing something that isn't theirs? So now I'm having to go back outside and put it up myself.

Then the letter about my increased medication costs. So I spent half and hour waiting for my insurance company to pick up. Then they sent me to call another number where I spent another half hour. Nothing was resolved. Just costs more and I cannot afford it.

Today is one day I wanted to crawl back into bed and pull the sheets over my head. But I was too stressed to unwind! So I'm having problems breathing - which is a common reaction when my lupus is active.

I just want to scream!!!!!! Oh and by the way, thanks Obama for my $15 a month increase. Won't cover any of the meds I take nor will it help with the cost of living increase.

Sunday, November 3, 2013

Oh The Joys of Waking Up!

I finally fell asleep this morning at 9:00 a.m. When I awoke, I had a sinus infection. Oh the joys of waking up SICK! No clue where this one came from. 

The weather here has been going up and down and with it comes a body full of extreme pain. Even turned on the heat, but this place is really cold. The cold doesn't help with my swollen, painful joints. 

So many times I wish I had a house again, one with a fireplace. I'd be just as happy with an all electric place to live. Gas heat doesn't do it. Wishing it was closer to the grocery store and the college. So many things I miss out on because of location and illness. 

On the tail end of a lupus flare and pushed myself out the door this past week. Looks like it was far too soon. I'm back to being so sick that I cannot sleep at night (another joy of lupus - insomnia). Still have almost eight weeks before seeing a new rheumatologist. 

Yesterday it hailed for awhile. White little ice pellets falling from the sky! Simply amazing since most of the day was bright and sunny. Rain was quite heavy Halloween night. They postponed trick or treating until Friday night. I don't get trick or treaters at my door, so this year I didn't bother buying candy. 

Looking forward to the first snowfall. We had some flakes last month, but didn't stick. Hoping this Christmas we will see white landscape. 

Sorry this is so "rambling" in context. It has been so hard to concentrate this flare go round. Just taking it one day at a time. 

Dreading the holidays. Looks like I'll be spending Christmas alone for sure. At least I have plenty of time to adjust my thinking (i.e. accept it). Being alone at Christmas is the worse feeling in the world. It magnifies the loss of my family so much. Who wants to be alone? I know I don't, but sometimes you just have to accept it and go on. Doesn't help that they are showing Christmas movies this early!

Time for more sinus medication. I think it is also time to put on a coat. Just too cold in here! Even Rascal is sleeping as close to me as he can because he's shivering. I think he needs one of those round cat beds, but since I cannot afford it, we'll have to do the best we can.