Thursday, September 26, 2013

I'm So Afraid

In case you haven't been keeping up with the news, the Senate and Congress are butting heads on the budget again. Their delay in making a decision will affect the lives of many people.

Please pray for those who are voting in our Senate and Congress. If they shut down the government, many people will suffer from it including seniors, the disabled, soldiers, etc. Their "games" will prevent people from paying mortgages, rent, electric bills, water bills, food, and medications. Stress is unbearable in the lives of those whom it will affect. Of course, the Senators, Congress and the President will be paid on the first of October.

I am one of those people who is overwhelmed with worry as October 1st approaches. With $25 in the bank and nowhere to go for help in paying for my rent, electric bill, water bill (all due on Oct. 3rd), I am begging you to please pray these people will unite and pass a bill before the end of this month.

This isn't just about what you believe is right or wrong. It involves the lives of those who will be greatly affected by their delay.




https://www.youcaring.com/manage-fundraiser.aspx


 

Wednesday, September 25, 2013

Stress, Back Pain, and STRESS!

Two days ago I bent down to pick up a towel and hurt my back. Having severe back problems already, this just made it worse. I've been miserable with only sitting, lying down and standing for short periods of time. It has been miserable. And I cannot afford to go to the doctor! With the government possibly shutting down and no way to pay my rent come Oct. 3rd, with me counting pennies just to pay for food, with stress mounting so high I've gone into another lupus flare, and now my back gone out, the one thing I need to do is go to the doctor, but I can't. So I'm sitting for short periods of time. Lying down for short periods of time. Standing for short periods of time. No medication I'm taking eases the pain, not even the pain patch. When you hurt your back and have back problems already, the misery is horrible!

I'm on a heating pad and praying!

Saturday, September 21, 2013

Stressed??? YES!!!

The government is playing games again. Should they shut down, I won't be able to pay my rent on Oct. 1st. I have no one to go to for help. What do I do?! I GET STRESSED! Then I have a flare.

This week I had a vasculitis outbreak. Not a good thing. Vasculitis is inflammation of the blood vessels. Going to the current rheumatologist is useless. He doesn't address problems. He just says, "Huh" and records it on his computer. I won't see the new rheumatologist until Dec. 31st and that is the soonest I could get in to see her. So I stress and suffer.

So if there is a miracle out there, I need one! $450 may not seem much to some, especially the politicians, but it is shelter for me.
They don't live in the real world and don't understand how their decisions affect the sick, elderly and disabled.

Thursday, September 19, 2013

Food for Thought





"There will always be poor people in the land. Therefore I command you to be openhanded toward your fellow Israelites who are poor and needy in your land." -Deuteronomy 15:11

Help those in need, even if they don't ask for help. :) God wants us to!



Young Faith



One cold evening during the holiday season a little boy about six or seven years old was standing out in front of a store window. The little child had no shoes and his clothes were mere rags. A young woman passing by saw the little boy and could read the longing in his pale blue eyes. She took the child by the hand and led him into the store. There she bought him some new shoes and a complete suit of warm clothing.

They came back outside into the street and the woman said to the child, "Now you can go back home and have a very happy holiday."

The little boy looked up at her and asked, "Are you God Ma'am?"

She smiled down at him and replied, "No son, I am just one of His children."

The little boy then said, "I KNEW you had to be of some relation."


Wednesday, September 18, 2013

Washing Machine On Its Last Legs

My washing machine is now on its last legs. It has been repaired to the point it can be repaired no more. When I washed clothes the other day, my kitchen floor was flooded. The wringer has stopped wringing clothes. Hand washing is next.

I checked the prices of washing machines. HOW on earth did they go up so much?! It appears I'll be washing by hand from now on.

How does this apply to Systemic lupus? The Stress is unbearable! Stress + lupus = Flares, swelling, extreme pain and bed.

Tuesday, September 17, 2013

Ahhhhhhhhhh!!

Went to a Bible study this morning at someone's home. Sat in a glider rocker for over two hours. Most of the time I cannot sit for thirty minutes because of my spine and back. I was able to sit in the glider rocker for two hours. Was amazed at how supportive it was to my back.

So now I want one. Can't afford one, but want one. When I looked them up online, they were listed in "nursery" furniture. Nursery nothing! This chair was amazing! If only I could get past the "counting pennies" at the end of the month and be able to save for something like this.

http://www.target.com/p/stork-craft-tuscany-glider-rocker-and-ottoman-oak-sage/-/A-11256228#prodSlot=dlp_medium_1_14&term=glider+rocker

 

The Windows Are Open and A Lesson Learned

Fall keeps tip-toeing into the month, then the high 80's return. By weekend we will be in the high 60's. Welcome Fall! Even though the up and down weather pattern is beating the tar out of my body, I love the cooler air so much. I've had the windows open today. Nice to have fresh air. Yet the change has forced me to stop in my tracks. Wanting so badly to go outside and walk - pain stopping me in my tracks.

When you have a chronic illness like mine you tend to feel alone in a world of healthy people. They buzz all around you while you stay still, in pain, suffering through the day. It has been a long lonely summer and I'm glad to see it go. Want to get out more, do more, but this horrible disease has stopped me. Financially, physically, and emotionally. I feel trapped inside a damaged shell I cannot shed.

So I'll open the windows after another round of heat passes and enjoy the cooler air until I can put my feet together and walk outside.

A big, old black and white tabby cat has taken refuge on my porch. I found out today he was physically hurt and was in the gully down the road several months ago. Must have been the time he showed up on my porch starving. Since then, he has become my cat statue, my guard cat on the doorstep. Buddy still comes to eat and get his loving, but this cat has reminded me of a very important lesson. Everyone, EVERYONE, needs and deserves a safe haven, a place where they know someone will love them, care for them, a place where they can sleep and feel protected. I'm glad my doorstep is his safe haven. He thanks me every day when I step outside to give him leftover food from Rascal's bowl. His big tom cat head rubs my legs and begs for a scratch. He's a good boy. God has used these crazy felines to remind me how important feeling safe and cared for is in this world. I have the "safe" in hand now. If only the cared for.

 

Auctions Ending soon!

Saturday, September 14, 2013

One Extreme to the Other!

Fall air came in Friday morning! It went from one extreme - mid 90's - to low 40's at night. Today it was 65 degrees at noon. I LOVE the cooler weather, but this extreme knocked the wind out of me. It changed so quickly that my body couldn't adjust. I ended up in bed for the past two days. Can't wait for the cooler temps to set in for the season and stay. Want to be able to go outside, start walking again and build up my system. Since I've been slowly deteriorating, the walks will be short.

A few weeks ago someone made the statement "lupus is not a social disease." She's a nurse and very familiar with its damage. What she meant was that with this disease, you can't plan ahead. Every day is different. When you stop, you stop. When you're swollen so badly you cannot move, you stop. When the pain is so extreme you cannot function, you don't sleep. When you don't sleep, you cannot have a normal day. Normal? Where did that come from?

When you can't get involved in activities like most people, they tend to forget you. What she should have said was lupus is a lonely disease. If people don't understand, they don't ask. They just avoid. Unfortunately, people are the same everywhere. Just like in Alabama, many days pass that I don't see another person. It is on days like this I am so sick I can barely walk across the floor. It is on days like this I need a friend.

Some people are uneducated by the illness. They react - withdraw as though it is contagious. It isn't. But instead of finding out, they walk the other way. Have experienced this for many years now.

Then there are those who say I don't have enough faith. That's why God doesn't heal me. Those I categorize as ignorant. They did their damage along the way until God taught me that people are more concerned about themselves than anyone else. Easier to point a finger and blame me.

Oh horrible disease, why did you have to claim my life after my brother's death? The extreme stress of caring for him, caring for my dad and working full time pushed my body to the brink. Why did you have to rob me of so many possibilities by the time I turned 35?

Where most are so concerned about their own lives, family, home, work, inner circle, I am thankful for the one person who steps out of that circle and understands. Where most are too busy to care, I am thankful for the one who does care. They are few and far between.

At this stage of my illness, I cannot get involved in different activities because my body simply will not hold up. I cannot dive into a world of "busy" life because I cannot function. So I have to rely on my faith. Once my eyes open in the morning, prayers are said and I attempt to get out of bed, this horrible disease determines what kind of day it will be.

It is definitely not a socially welcoming disease. It is a lonely one.

 

Thursday, September 12, 2013

Diagnosis

My test results revealed I am at an extremely low level of Vitamin D. This is causing my system to go haywire. So high doses of Vitamin D for awhile. Makes sense. People with systemic lupus cannot be in the sun. It activates the disease. We get most of our Vitamin D from the sun. One more expense. One more pill to fill. One more one more one more!

If it makes a difference in how I feel, stops my hair from falling out, helps me rest better, I'm up for it. Will cut into other areas of finances.

_---------------------------------------------------------------

I ran across this on the internet and wanted to share it:

https://www.facebook.com/mary.calhoun.73#!/photo.php?v=10151846363680799&set=vb.278597188832702&type=2&theater

 

Wednesday, September 11, 2013

New Doctors and New Expenses

My local MD will be referring me to a new rheumatologist soon. This means a whole new set of medical tests. Costs galore! So I'm back using ebay to pay for them. Please stop by and look.

http://www.ebay.com/sch/maryjcal/m.html?item=321206215274&ssPageName=STRK%3AMESELX%3AIT&rt=nc&_trksid=p2047675.l2562

 

Sunday, September 8, 2013

Lingering Heat!

The heat is lingering in Wilmore. Was up near 90 today. I guess the weather is making up for lost time. Unfortunately, the heat has made me terribly sick again. Last night was the worst. Spent the night in the bathroom again wondering if I should go the ER. Sad thing was I was just too drained to get dressed and go.

Yes, a lupus flare has ensued. Fevers and chills all day today. Staying in bed was hard. Rascal decided he wanted the bed and wanted me out. He finally won. Now I'm sitting up while he is sleeping.

My neighbors had a cookout late yesterday so that we could meet each other. I went for awhile even though it was hot outside. I think the heat is what caused my flare. At any rate, it was good to put names to faces and find out whose children were running around to whose houses. Nice people here. Always willing to lend a hand when you need one. They're friendly. Caring. Nothing like the people I lived around in Alabama. It has taken me a year to let down my guard a bit. Coming out of a war zone was hard.

Sad to say I have another doctor's appointment this week. Time for my three month check up again. With lupus you juggle doctors, meds and appointments. Gets old and tiring. Professional patient for eighteen years now. Sad also to say I'm looking for a new rheumatologist. When you don't trust a doctor, time to move to the next. Wednesday's appointment with my GP will be a full one. Add a flu shot onto the list.

Sad to say also the doctor's visit cuts into the remaining funds I have for the month. I'll be back to counting pennies again until October.

So my body is a wreck today, thank you lupus, and my spirits are low. Two steps forward and ten back. Maybe tomorrow will be a better day.

Sunday, September 1, 2013

Random Thoughts On A Sunday Afternoon

Welcome September! Won't be long before your cooler days and crisp nights will ease the pain I suffer with every day. I'll usher out the heat and say goodbye with happiness to summer. Fall is one of my favorite times of year. In Wilmore, the leaves turn, the air is cool, and Fall is a change of season. Every day I look at the thermometer outside my door longing for summer's hold to release and cooler temps to seep in. Just a few more degrees please! I tried sitting on the porch this afternoon, but just couldn't bear it. Lasted only fifteen minutes.

Fall is only a breath away. The days are getting longer now. The fireflies are not as many. Before long there will be leaves scattered across the yard covering grass that has gone to sleep for the season. As the temps fall, winter will be only a hop, skip and a jump away. A winter's snow, clean, crisp and white, will cover what is just a memory of the heat that destroys my body right now. I look forward to winter's snow.

So much to do inside - clean out, put away, sort. Yet the heat has done its damage and flared my lupus once more slowing me down to a snail's pace. So the pile that needs cleaning, putting away and sorting is left undone. There is no one to do it for me. No one volunteers to help. No one lives here but me and the cat.

I've learned not to stress about the pile of undone tasks that others would judge as lazy. They don't understand. I wouldn't wish this disease on anyone. Yes, I get angry at those who know I am sick, but pass judgement on me anyway. They don't stop and think about what it feels like to suffer after eighteen years of battling a disease slowly destroying the body I live in on a day to day basis. They don't understand the horrid side effects the multiple medications I take do to my mind, body and soul, but I have to take them. Otherwise I wouldn't be here. They don't understand how it feels to walk on two feet and two legs that have no feeling anymore. It takes full concentration to walk on limbs that don't work while you lean on a cane. At the same time, the body you lean on has been so damaged by flares, meds, other illnesses, etc. that the pain is sometimes unbearable. How could anyone understand unless they have felt the same pain? They don't understand the tasks I can accomplish on a day to day basis are very limited.

Yesterday I searched through an old box and found a scrap book of photos from my Wallace College days. There were the faces of old friends, guys I had such big crushes on (but they didn't know I existed), and memories. The memories were of fun times and times when I was so unsure of myself, seeing myself as hideously ugly (thanks to the daily reminder of my mother), and having no self confidence at all. I looked at those photos and wondered then what was so wrong with me? All of those horrible views I saw in the mirror were put there by the words my mother spoke - you're ugly, no one will ever want you. And I believed her. Words are hard to heal once they are beaten into a child. Be careful what you say. They're even quite harmful to adults. I believe in the "don't say anything if you can't say something good" analogy.

Go one step further. If you hear something good said about someone this week, tell that person. They will never know unless you tell them. Just think of the difference it would make in their life.