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.

Tuesday, November 29, 2016

Go Fund Me

Please share this link. Any help would be appreciated. Please add me to your prayers!

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

Such Is A Life With Lupus

Yesterday was productive. Today I'm in so much pain I can barely function. It isn't the kind of pain you get from over doing, but pain that festers from a lupus flare. We were so blessed with quite a bit of rain yesterday and chances are there today. Unfortunately rain and the wacky up and down weather we've had pushed my flares into overdrive. Such is life with this horrible disease.

So I'm stuck in bed again praying my next door neighbor will settle down and stop slamming doors so I can rest!

I actually had someone tell me the other day that when I had an actual illness to let them know. Instead of responding with "well you don't look stupid. Perhaps you hide it well," I merely walked away. The Bible teaches in Proverbs that if you argue with a fool you are no better than him.

So for that Proverbial Fool I say the following: 1. Lupus is a real illness. It causes your body to attack itself and the damage is irreparable. 2. Lupus causes other illness as well. This disease has spawned  twelve new ones. I'm taking fifteen medications, plus Benlysta infusions, to manage them because none are curable. Sometimes I think I rattle when I walk! 3. Lupus will not only send you to the ER and put you in the hospital, it gives you countless doctors to visit. You literally become a professional patient. 4. It Rob's you of a normal life. You reach a point you can no longer function let alone work. Each year something stops working causing you to learn how to cope. This becomes your normal. 4. Friends become far and few between. I've lost several lifelong Friends who either thought I might need their health from time to time or simply didn't care. Then there are those who Get tired of you being sick all of the time and their last minute invitations stop. Get sick and see how yours handle it. 5. You lose jobs. I was laid off because of lupus. Reason being? They didn't want my honourable disease to cause their insurance premiums to go up. Top it off with the fact I was working for a large church at the time. 6. And this disease kills. Many have died from it including author Flannery O'Connor. Her father died from it as well. Causes heat attacks, kidney failure, lung damage, plus a multitude of other things. 7. The weather will literally make you sick! Up and down temperatures, rain, snow, extreme heat, extreme cold. Believe me when I say you have no control when it happens. 8. If you still have family you're not guaranteed they will be there for you. And if you don't (mine were all dead by the time I was 35), you have to find your own strength to get through it. Some days are impossible. Others not. You have to decide whether to spend your life being angry and blaming God, or realize He's the one who loves and cares about you everyday and will provide your needs when a friend is too busy in their own life. And if you are still single, you have to face facts that illness will chase off any potential of marriage. I was engaged twice. Both hit the road because they didn't want to deal with this horrible disease. You find a way to face the truth and go on. 10. Majority of doctors don't listen or care. It is just a job to them When you find one who does, hang onto them! I was stupid by moving out of state leaving behind the best doctor I ever had and paying the consequences by being back on the doctor to doctor trail.

Just remember that every action has a cause and affect. You reap what you so. You learn what to do and what not to do. To this person I say that I am sick. I did not ask for this life, but still know God works all things to good. I'm weak mentally and physically. Stress makes it worse. The stress others put on me is far worse because I can't seem to avoid it. You never know when someone will go off on you. I have suffered twenty-two years with this disease and believe me when I say it is far too real. Doctors predicted I would die within ten years. Let it be known you're not leaving this world until it comes your time. And know this disease is a horribly expensive one. Costs of medicine, hospital costs, doctors, treatments, inability to ever work again can take you down. Before there ever was a Medicare part D, I lost all of my savings and was bankrupt from it. We're talking some individual meds costing into the higher hundreds per month. Now multiply that with fifteen medications.

Systemic lupus is more real than you could ever know. And did I mention total strangers will judge whether you're sick or not?  Perhaps that is why I have no patience with people who whine and whimper over things that just don't matter in the long run. when you have to bury you mama, daddy, and only siblings, when you suffer alone in life from an unwelcome disease that you did not cause or ask for, and when you're left to deal with the hard task of life without someone giving you money whenever your hand is out merely wanting something you don't want to work for, then I will listen. Better yet I'll care and help you the best way I can. otherwise remember life IS hard for all of us. Kindness and compassion goes a long way! What a life!



Saturday, November 26, 2016

Life with Benlysta

With the side effects, cost, and dealing with this all alone, it is hard. So I've had to return to my Go Fund Me account for help. My insurance covers all but 20 percent. The medication is given by IV once a month. This month there were two treatments. My bill will be rolling in soon and I can't do it by myself. I had to end my treatment one and a half years ago because of cost. 

Please pass on the link. Life is hard enough. Stress is deadly to lupus patients. 

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



Welcome to my world!!

 





What a Few Days!

My body is still affected by the Benlysta. The best side effect is solid sleep for a few days. The worst is headaches, pain, exhaustion, etc. Will take time to adjust to it. Just hope I can afford to keep the treatments.

I just wasted an hour responding to fools. The Bible says a fool says in his heart there is no God. Some talk just to hear their own words. Unfortunately the Bible also says responding to a fool makes you one as well. I just hate hearing fools attack a pastor's facebook page. Why is it that people who are so angry, disillusioned and don't believe God exists are bullies as well? If you don't believe, fine, don't push your agenda on others. If a train was heading straight for you and someone reached out and snatched you off the tracks, would you be a bully or appreciate the help? And I'm sick of Bible bashers. If you haven't read it, don't speak. I feel the same way about the Harry Potter books. Personally I don't think they're any different than the Disney movies. And yes I have read the books and watched the movies. How can anyone judge something they know nothing about?

Sad to say I'm now aware of the multitude of fools in this world. My advice to you is do your own searching and find the truth. Start reading the Bible, not a prayer book, not a how to book, the Bible. If you don't agree, keep it to yourself.

I had one person say if you use man made medicine you have no faith. Really? Do you wear glasses or know someone who does? Do they not have enough faith? We live in a fallen world. Sin came in with Adam and Eve. This is not the world God created for them. It was a beautiful garden. Man chose sin and the world has gone downhill ever since. Thankfully the end is coming faster than we can ever know. The Bible says when events start occurring like labor pains, the end is near. I look at the news and read the Bible. Both are running neck and neck these days.

Another person said everyone should be angry we have to die. That one hit me hard and made me mad. Then again Jesus had bouts of stating his opinion and his actions spoke louder than words. I have lost every member of my family. It has been twenty years. Lost my health. Yes, I was confused and angry until I learned over time this was part of life. One day I won't hurt anymore and I will dance in Heaven. There won't be a time I ever hate God for my circumstances. I get angry. I get frustrated. I'm human and weak. But I know there comes a time when all of this mess will be gone and life will be eternal.

I finally stopped myself from responding to fools. I realized I was no different than them. Lord forgive me. And Lord please come quickly!

He is the great artist, the great creator. I am so thankful to have His peace.


Tuesday, November 22, 2016

Unspoken Thoughts

This morning when I went outside to check on the kitties, I looked up at the sunrise. All I could say was "WOW!" God is the ultimate artist! My vision is going faster than I thought, especially in one eye. Today I am so thankful for the gift of sight.


When the holidays roll around, I always feel more depressed than ever. The loss of family (in my case all of them) is overwhelming enough, but at Thanksgiving and Christmas the loss is more intense. I miss them so much even though many years have passed. 

I have found very few people who open their doors at the holidays. When I do find an invitation (which is rare), I find myself feeling more alone in the crowd than I would at home. Perhaps it is because I can distract myself at home by reading, watching a movie, etc. So either answer is hard. Some would never open their homes at this time of year because they see it as a family only gathering. And if you sense someone is asking out of obligation or feel sorry for you because you're alone, you can sense it immediately. 

There are many people, old and young, who don't have a family anymore. Many who suffer severely this time of year. Remember them and do something. Random thoughts don't matter. Action does. 

 Cold temps have hit in Wilmore. Even after putting up plastic on the windows, I can still feel the cold when the temps drop outside. There is no way to stay warm in this apartment without running the heat at full blast. When you have to pay for fifteen medications, plus the Benlysta treatment bill coming soon, and you are disabled, it is extremely hard. You have to make a choice: heat, food, medications, necessities. So I spend a great deal of time under a heated blanket. So do the kitties. Heat and some food take a backseat. 

The cold affects lupus. My joints are so swollen and painful. I can barely walk across the floor this week. And Benlysta treatment number two is tomorrow. So everything around me is a clutter. Easier to reach things and walk less when it is in reach. My allergies seem to have worsened and I've been stopped up and sneezing for days. 

Just hoping for a few days of life without pain and being able to stay warm.

 

Sunday, November 20, 2016

Another Benlysta Treatment and Other Thoughts

Had one super good day with the first treatment. Then I crashed for days. Couldn't function. Barely could get out of bed. Another treatment (number 2 of the month) comes Wednesday, the day before Thanksgiving. Not sure how it will affect me so this year may be spent in bed. Know the 20% cost will hit me before the year is up, but Benlysta is the last medication I can take. I've been through a gamut of meds for over twenty-two years of suffering from this disease. All stopped working.

This time of year is especially hard. Losing my family so early in life has been difficult. While others sit down with parents, siblings, grandparents, aunts, uncles, etc. I only have a memory of doing so. If you still have your family, make sure you spend time with them. Once they're gone, they're gone.

Wanted to say one thing about Donald Trump. I watched an interview done on Fox News website/channel this past Saturday. In it he spoke of his brother who died at age 42 from alcoholism. He has never taken a drink because of it. This gave me far more respect for the man. The interviewer shared how a friend of his heard Mr. Trump tell his daughter he didn't want her drinking when she was going out with her friends. That stayed with him. He also stated he never took drugs or smoked cigarettes.

Growing up with a functioning alcoholic father (meaning he still held a job), I understand the trauma that hits you. It is easy to become ashamed of what you were experiencing at home so you avoided people altogether. I did. Still I was bullied for being a goody goody and never taking a drink, smoking and other things. It just seemed as though what was wrong was accepted more than what was right and today that sentiment is completely on target. I was beginning to think I was the only person in the world today who has never touched alcohol. And I never will.

Mr. Trump shared this story in hopes someone would be affected by it. I was affected. I found out I wasn't alone in the world on this decision. I have more respect knowing our new president will not be under the influence when making decisions.

My father stopped drinking after my brother died. Was so thankful to have two years of a sober father, but grieved the fact I would only have him two years in that condition.

http://insider.foxnews.com/2016/11/16/objectified-donald-trump-fox-news-takes-unique-look-president-elect

Monday, November 14, 2016

Tuesday, November 8, 2016

Benlysta

I start back on Benlysta tomorrow. Having been removed from plaquenil after taking it for 22 years, I've reached the end of the line of medicine to treat lupus. The plaquenil caused eye damage. Add to it glaucoma and cataracts on both eyes, they hope removing me from the medication and removing the cataracts will help some. At least they will be able to tell how much damage glaucoma has caused. Today I had trouble reading the election ballot. What will it be like next time?

My greatest concern is the twenty percent of the cost of Benlysta not covered under my insurance. Big worry!

Last week I returned to the retina specialist. He did several more tests to determine the plaquenil damage. I was there four hours, two of which were spent waiting. The new test measured the eye brain connection that somehow clarified the extent of damage to my eyes from medication. They took a string similar to dental floss and stretched it across my eye with the string touching the eye. This was done to both. Hooked up electrodes to both earlobes and to my arm. By the time the day was done my eyes were screaming with pain. All I could think was this brand new machine, the only one in Kentucky, was progress? Lunatic must have designed it.

I'm tired of being a guinea pig. Tired of pills. Tired of struggling alone. Tired of counting pennies just to survive. Tired of being sick and tired. Sometimes I wish I were a child who was adopted by someone who would take care of me. So what do I do? No open doors. No opportunities. Back to taking one day at a time. It is the only way to function.


Saturday, October 22, 2016

Just Another Day

Still having a hard time functioning. Washing dishes, sweeping, vacuuming, etc., tasks mist people give little thought to have become extremely difficult for me. And it makes my heart heavy, sad.

Today how I wish I could go home - where I was raised. Feel the sweet release of security. Just walk into my old room, crawl into bed and rest, the kind of rest that has no timetable. And even though my family was filled with anger and heartache, it was still home. It has been twenty-three years since I went home. It belongs to someone else now. My family all passed away. There is no home to go home to anymore.

I worked so hard to get away from there in my early twenties. Even chose a college out of state. But illness and death drew me home. My own loss of health took what was left - inability to work, care for myself even though I don't have a choice. Loss of friends, lack of support, encouragement. Now wondering everyday I wake up what's coming next. I'm tired, I'm sick, I'm depressed. Chemical imbalance? Probably. Illness side effects? Definitely.

It has been a struggle my whole life. I'm just tired of struggling. And I'm tired of being stuck in bed, sick, alone. Today I'm just worn out.

Friday, October 21, 2016

More Flares and other Thoughts

The doctor took me completely off the plaquenil that has prevented flares and fevers. Since I now have plaquenil toxicity, when the medication deposits on the retina causing blindness, I can no longer take it. The only medicine left in the long line of others that did not work is Benlysta. I have taken Benlysta (a medication given by IV) before and spent two weeks out of four wiped out, unable to function at all, and struggling just to make it financially since my insurance covers all but 20%. So I'm waiting for the hospital to call and schedule another round I will take once a month.

It is doubly hard to do mundane daily things when you are wiped out, have fevers of 102-103, are in intense pain, etc., etc., etc. Just trying to vacuum, mop the floor or stand at the sink to wash dishes is a struggle. The results of the past few months show in my apartment. It also causes depression because I can't do anything but sit in a chair or lie down. Put yourself in these shoes and see how it feels.

So now the financial struggle begins again for the medication. Such a dread. I have no choice. It is either take the medication and hope for some response or just stop and die.

Stress hasn't helped. Our neighborhood has gone so far down in the past couple of years. I was talking with my next door neighbor and she feels the same way. The lady across the street does, too. When you have a president who releases over 80,000 drug dealers or those who were caught with drugs, the neighborhoods get flooded. As has ours. On Tuesday morning when I went outside to feed Buddy and Tom, there were three police cars in the road just a few doors down. They remained at least two hours. Wednesday night and Thursday night there were three more in the same location. Keep in mind they were positioned on the dead end of the street. Even though it unnerves me to see this happen, part of me felt safer knowing they were there. Too many drug dealers try to hide in small towns like Wilmore. Then the damage is done and it radiates to every door.

This election scares me silly. There is no way I will vote for someone who wants open borders (just to pad the Democrat voter registration), murders babies in the womb (even up to the point of birth), double our national debt and keep going, turns their back on Israel, fine a Christian bakery for choosing to follow their beliefs, taking away the second amendment (even though the politicians can't go to the bathroom without a body guard), and the list goes on. It isn't about personalities or a popularity contest. Gone are the days of choosing a person whose work speaks for themselves. Instead we have a government that is unbalanced. You have to vote for a party in order to accomplish anything. Just depends on what you want to accomplish.  It is about the issues at hand. I found two links that sum up what this election is truly about. So don't argue with me or point fingers because you're not open to accepting a different choice. Try looking at the issues. I heard someone say vote your conscience. Instead vote for the issues. They will affect every aspect of your life. Even your bank account!

https://billygraham.org/story/2016-party-platforms/


https://www.instagram.com/p/BJechI2hnhJ/


Monday, October 10, 2016

Fever!

Stress has caused a fever of 102.9. Just can't break it after three hours. Don't want to go to the emergency room. Flare in full swing. The highest temperature was 103 degrees.

At 3:30 am my fever broke. Eleven hours of suffering.

Friday, September 30, 2016

I Need A Miracle!

I spoke with my neighbor across the street simply to pass some information about the landlord who owns the duplex across the street. She, too, had problems with them. She expressed how fed up she is with the bunch. I shared my experiences and gave her the name of the officer who is working the case. What would make a difference is if other neighbors called as well. I feel like I'm fighting alone. Ever reminded of the eight other times I've encountered drugs, drug dealers and criminals living next door to me and having to deal with the situation alone. There are simply no safe places anymore, but I settle for one without drug dealers and addicts. It's all about them. No boudaries, no self control.

Yesterday it was the dog getting out loose without a leash. I yelled at the dog when he charged onto my porch. Troubled neighbor started yelling and cussing me out. He threatened to beat me up and kill Buddy my cat. This has Already become a case. This afternoon he decided to work on his car in the driveway and turn his car stereo up to blasting.

I did what the officer told me. Call everything in. There was an officer in a plain car who stopped. That conversation went on for ever. Thankfully I was not in the middle. The reason I was told to call everytime was the more police show up, they know they're being watched and the officer said they would get paranoid and leave.

I will never understand how a landlord overlooks so much: drug dealers, drug parties, blasting music, wild large dog let loose to run rampant in the neighborhood, a child going into other yards when folks   aren't home to play and take things with them. I don't understand how after six police calls this land Lord doesn't evict them. He's taking drug money for rent. Then I remember a landlord from Dothan who did the exact same thing. Could care less about the danger around us. He, too, did nothing.

I've been suffering since I fell Monday night. Bruised and swollen, I have
not moved around well. Those glaucoma drops burn my eyes red and make them hurt. I'm scared to take them, but afraid not to do so. I can't believe I'm losing my sight.

Prayers went up from a ladies Bible study tonight. I am a firm believer in prayer, but I also believe putting your feet behind prayers and helping someone in a bad situation by doing something. I understand how someone gets desperate enough to kill themselves. People are so willing to pray, but leave it at that. It becomes a way to not get involved. Pray and go - the practice of Christians today. I need prayer, but I need help more!!!!!

Oh how I wish someone would adopt me, share their family with me so that I won't have to be alone. As it is, I'm bogged down with being so alone, never fitting in. I ask God every night to take me home. I have no purpose, no quality of life, slowly my body is breaking down from a 22 year illness, I am losing my sight. I have no help for everyday things, cleaning, cooking a decent meal. I simply don't have the stamina. I am simply tired of trying. I have no desire to keep going. I'm exhausted and done.

I've tried to get back to a time I was actually happy in Wilmore, but it is as if my fond memories and joy have been smothered out of me by criminals next duplex over, losing my site, suffering with chronic fatigue, pain, countless doctor appointments and an ever growing medicine list that has reached 16 prescriptions a month! Is it worth it anymore? I don't know. Problem is there is no one to encourage me, no hugs, no laughter and no support. I'm lost trying to find that place where I was happy and content, but it has become a stranger to me.

I've heard people talk about a person losing hope and simply give up life, soul and spirit. Sometimes I wish I could just do
that. Just let go.

I need a miracle. Either the bad apples next door have to go or I have to find a new place. Otherwise I am standing on the edge contemplating letting go for good.

Tuesday, September 27, 2016

Will it ever stop?

Yesterday I saw the eye doctor again. She did four more tests to confirm that I have glaucoma. In just a few short weeks after picking up new glasses, my vision has worsened. And yes, I have glaucoma, add another prescription. Cataracts are getting worse, but she doesn't want to do anything until she knows for sure whether taking off the cataracts would indeed improve my vision. Head back to the retina doctor in two months to take two more tests to see if plaquenil is beyond the point of taking it anymore. The one medication that helps control the lupus symptoms. 

When I arrived home yesterday, my rheumatologist office had called and asked me to return the call. When I tried, I was informed they were having phone problems and I could not get through. So I called today and left a message for the new nurse to call me back. When she did, she didn't have a clue as to why she would have called me. I assured her I didn't call back for no reason and she had indeed called and asked me to return the call. She never called back so I guess she never remembered. Typical rheumatologist experience.

Last night I reached for something on my nightstand and fell off the bed hitting my head on the night stand. When I tried to get up again, I fell over a chair. So bruised up! 

Let's add another shall we? The bad duplex next door to me let the dog out again and he headed straight for my door. I screamed him away and the "boyfriend" (who has been running drugs out of that place for weeks) started yelling at me, threatening to beat  me up, and killing my cat. So after I pulled myself together, I called the local police and asked to speak to someone in that office. 

The policeman called me back. I explained everything that had gone on for months now and he said they were familiar with that duplex and said I would have to file against the guy who threatened me saying it was a terrorist threat. And only if something happens to my cat would they be able to do anything. It would change to a crime. First of all, I don't want anything to happen to my cat. I can't make him come in so that's out of the question. Two, there is a leash law in Wilmore. Dogs on leash. Not applied to cats. 

This has gone on long enough. The officer told me he would collect the tag numbers and names of the people when he went over there saying there had been a complaint. Said he would put this neighborhood on car patrol, and would call me later to let me know what happened. 

As I look out the window, I realize he's been over there a long time already. I'm sure they are not telling the truth, which he informed me he would be shocked if they did. 

I talked with my next door neighbor who also had a bad experience with them. He said next city council meeting he would be bringing up this issue to rid the neighborhood of the drugs. I just hope he follows through. 

I left Alabama to get away from this mess. I don't intend to move, but to stay and fight if I have to. But the stress is really killing me. If I had another place to go today, I'd be gone.

Saturday, September 3, 2016

Unbelievable

I moved to Wilmore to get away from the crime. It never dawned on me there would be drug crime running rampant through this town. The drug apartment now has three big dogs running around loose and two more car loads of addicts inside. My experience with drug addicts and sellers moving in next door to me has always had the tell tale signs. One being a bunch of dogs guarding their stash.

Again tonight I had to call the police. Lucky me! The family across the street had already tried, but no one would answer when they called the police. I just happened to call before my next door neighbor made contact. This neighborhood has just had it. When the neighbor across the street asked if I had called yet, I told her I did, but something might be done if more neighbors called and complained. She then told me she tried and would continue to do so. Apparently the dogs attacked her dog while she was walking him. Not to mention the parents who are worried about their children.

The cops are arriving faster. Little good it did. I was talking with him when he received info back that the woman called in and was out of town. She said someone must have broken into her place for the dogs to be out. We both stood there rolling our eyes. Dumbest excuse I ever heard.

The police are aware this is a drug house and so is the landlord. Just as I expected, as long as he gets his money he doesn't care. I followed up with a call to him informing him what was going on. All he said was that he would talk to her tomorrow. Background check people! Not that hard to do!!

Tie this in to lupus. I'm stressed beyond belief. Started the fevers for a bad flare thanks to all of this. The lack of law enforcement is literally making me sick!

When I moved here four years ago, I was so thankful to have a safe place to rest my head at night. Now safety has gone out the window. I've had more flares than I can count this summer because of this neighborhood. Wilmore should be a shame!

Settling in for a rollercoaster of flares. Too bad I can't hold someone legally responsible for the decline of my health. Hitting them in the pocketbook would light a fire under them to take action. As the cop in Dothan, fonce told me, "Call the police
Every time. Once the criminals know the police are on to them, they tend to move on." Time to move on!

Wednesday, August 31, 2016

A Tribute to my Daddy

Today is my daddy's birthday. He would have been 94 today. He died twenty years ago. The pain is  still as fresh as it was way back then. I've spent the entire day in tears. Grief knows no timetable.

With only a sixth grade education (he had to drop out to help his family work a sharecropper farm), he was the hardest working man I ever knew. One of the hardest lessons I learned was when I graduated high-school. I was told to find a way to go to college (meaning pay my own way) or get a job tomorrow and pay rent and utilities. I got both - worked in a sewing factory on my feet for eight hours on the night shift. Walked between the hemming machines adding pillow cases to be hemmed. Slept five hours, got up and went to college full time. Would never have happened if he had not been so tough on me. I ran out of gas on the way home from work. Was two miles from home. Of course the country store and gas station had been closed for hours. I called him. Daddy said I'd better start walking then. When I made it home, there was an empty gas cap on the table.  He said to take it with me when I walked back to fill up the car. He was a teacher of responsibility.

His grade latest gift was being content with what he had and being where he was. This quality is what I yearned to learn. In a world focused on being more, getting more, and moving up the ladder of success, I am thankful to have had a Daddy whose focus was to provide and care for his family, working hard and giving his children a strong work ethic. Never handing us things, but teaching us hard work and respectability was important to surviving. He always said just giving us money or things instead of us learning how the real world worked would not be doing us a favor. And he was right.

He was a WWII veteran, a carpenter,and a gardener. When he was young, he worked in the CCC camp so that he could send money home to his family. He was a fisherman who supplied many fish to feed our family during hard times. During that time he had a large garden that fed us all.

He had a great compassion and love for all animals, and they in turn loved him, too. I am thankful to have inherited his love for animals.

Most of all he is my Daddy and I miss him everyday!




Monday, August 22, 2016

What a Bad Day!

When I woke up this morning I had the fleeting thought of how happy I was that I wouldn't have to go back to see a doctor until October. Then I went to the eye doctor! Went in for a plaquenil test and came out with a $40 charge just to get a new glasses prescription, cataracts on both eyes, glaucoma, and plaquenil toxicity. Two more exams to go - one next month with her to check my eye pressure and waiting to hear when I go to Lexington to see a retina specialist to determine damage med has done after taking it 22 years. Can't go off cold turkey because lupus would put me in the hospital. Plaquenil controls the fevers and flares. It is the only medication (besides Benlysta) that controls the flares. All of the other fifteen medications control symptoms. 

So now I have to come up with money for a pair of glasses, to copay eye doctor visits and retina specialist. Once I am safely off the plaquenil, they will start doing cataract surgery. Can you say "cha-ching!"

I am still in shock with the diagnosis. Any prayers you can spare would be appreciated!

Friday, August 19, 2016

Random

The temperatures and weather here has been off the chart. One day hot, next day cool. Several rainy. Today I've been in so much pain. Just can't get comfortable.

One more doctor's appointment on Monday. Time for a plaquenil test and eye exam. For those who don't know, plaquenil, a drug used to treat lupus, deposits on the back of your retinas causing vision damage. Has to be checked at least once a year. I've only been checked once in four years.

Lupus caused a great deal of damage to my vision over the years. Before I left Dothan, I was diagnosed with pre-glaucoma. Not here. I miss the eye doctor I saw in Dothan.

I've been blessed this week. Thank you Christy!

Time to head to the shower. Hoping a hot bath will loosen the pain.

Friday, August 12, 2016

Never Thought About It

Yesterday an old college friend asked me if I had a support system. Actually I had to answer the truth. Nope. No one encourages me every day, I never get hugs and as of today it has been six days since I've seen another person. I guess you could say this illness and suffering from it for so long has caused me to lose faith in people. Always said when the day comes where I didn't have to spend the Christmas season alone, I'd start believing in people again. But just like anywhere else I've been, talk is cheap and lack of actions speak so much louder.

Please don't tell me people mean well and expect me to believe it. As I write this I'm alone yet another day and another night.

Cost of medication is rising. My kitties are out of food already (thanks to that neighborhood dog, whom I haven't seen in two weeks). And I need food as well. The past two weeks have been terribly hard. The stress from July caused some pretty severe flares, fevers, swelling joints, and huge sores on my body. Today was the first day in two weeks I've been able to sit in the living room most of the day.

So to answer her question, no, I don't. I've simply grown used to having to deal with all of this alone. She's right - no one should have to grow used to this!!

So if you're out there suffering and have at least one family member or friend who checks on you, helps you in any way, be thankful. It is a rougher road alone.

There's not a moment I wish to go back home to Alabama (more frequently after a doctor's visit and lack of care. Then I wish and pray hard for God to open a financial door for me making my desperate need more real. Dear Father God please send me all the support I need to restore my home to Alabama again and bless me with the gift if my rheumatologist there. I can't do this alone. I need help in every area. If humanity has truly become the uncaring selfish people I believe they have, please send down angels and the Holy Spirit to get the job done. My hope rests in You!

On these dry miserably hot days in Kentucky, and yes they cause all kinds of pain with humidity and the barometric pressure beating on me. In these days I beg God to bless us with rain to quench the heat, send water to the vegetation on earth, to water the glorious and unique animals who live among us. Tonight I heard thunder and looked out the window to see rain. Miss little bit and I did a gig for joy! Well a small gig (b
Hard to dance on two feet and legs with permanent nerve damage while balancing yourself with a cane! It has been a long while since we had rain and every drop helps.

I lay my head down on my pillow and dreamed of the ocean, of Panama City beach FL. Memories of walking in the sand after the sun went down, feeling the warm sand on me when I sat down, hearing and watching the birds hunt for supper. Remembering how cold it was one December where I had to go to Walmart to get gloves, scarf and hat, and warmer closed in shoes before I could walk the beach. It was bbbbiiiitttteeeer!

But if I ever came into money, I would live on the beach. I recall a time when the staff went to the beach for a planning retreat. I spent most of my time looking at the waves and letting me be hypnotized by them. My favorite spot was on the screened in back porch just feet away from the water. I would si and write stories and poems. I'd also allow the waves to rush over me with their healing touch. It was there I felt calm, at peace and knew God could and would do anything. He was in charge of this mere existence my small  life shown. God's word is powerful and strong. Know He is the beginning and the end. I feel closer to Him at the ocean than any other place on earth. 

Sunday, July 31, 2016

I'm Tired!

I'm tired. So tired of stress caused by other people. So tired of dealing with people who never learned manners or how to behave. I'm tired of people telling me to be more sensitive (politically correct) when it comes  my beliefs. I'm tired of seeing people abuse animals and children. I'm sick and tired of women thinking abortion (murder) is birth control. I'm sick of Christians walking away instead of standing up for what they believe. I'm angry that parents don't get the fact that when a child is born, it isn't about them anymore.

My lupus is on high alert today hitting every joint, I'm swollen and in horrible pain. Thanks a lot stress! I read an article recently telling all who suffer from lupus to control your trigger points. How, pray tell, can you control other people who cause stress?!

It also stresses me out when I realize there are so many people who are so naive. Instead of listening to both sides and making common sense decisions they just listen and accept without question. Before this election process began, I had a hard time understanding how the anti-christ yet to come would be admired and accepted by so many. It appears common sense isn't so common anymore. People are too accepting without question.

I watch Judge Jeanine every Saturday night. She is one sharp cookie. She peels off the sugar coating politicians pour over truth (in other words blatant lies) and gets down to the facts.

I can only hope others will hear what she has to say and wake up. This election is not about putting a woman in the White House. It is about so many more important things that affect our day to day lives. If you don't like Trump, fine. Vote for the issues at hand. Just don't listen to the news media and let them decide for you. Just listen. Get out of the "see what you want to see and hear what you want to hear" mindset and start looking at the facts.
Click on the link below.

http://insider.foxnews.com/2016/07/31/judge-jeanine-reacts-dnc-hillary-clinton-vs-donald-trump-2016-racehttp://insider.foxnews.com/2016/07/31/judge-jeanine-reacts-dnc-hillary-clinton-vs-donald-trump-2016-racek



Friday, July 29, 2016

I've Had Enough!

 Tonight I stepped on the porch to feed my kitties. A big dog ran up to my porch and tried to bite me. This isn't the first time it has happened. The people in the building next door let their huge dog run around loose. The police have been to that residence five times (counting tonight) since they moved in in November of last year.

Instead of coming over and getting her dog and leaving, she stood on my doorstep and harassed and threatened me. She just kept going over and over and over. Threatened to beat my cats. Threatened me. I'm so thankful my next door neighbor stepped out onto the porch and saw the whole thing including the dog being aggressive.

I kept telling her to leave my porch. She just got worse. She even started yelling at my neighbor when she, too, told her to leave. I told her if she didn't go I'd call 911. She wouldn't budge. I dialed 911 and she walked off.

Two officers came. The first one from Nicholasville listened to what happened and went straight over to her and spent more time with her. When he returned, my neighbor was outside with me. He only said I could file charges and that he could do nothing unless he saw the incident himself.  Only told her to stay away from me and keep the dog on a leash.

The Wilmore officer said more when he arrived. He listened to what we said. I kept reiterating how her harassment was more of a concern to me. He, too, said I could file charges, that he would write up what had happened, and tell her himself that if she came back on this property she would go to jail.

I am utterly amazed. A policeman has to see the incident in order to do something about it. First one had no intention of doing anything. The second one got it.

I'm so tired of this! Isn't there anywhere safe you can live anymore? To think I moved here to get away from crime!

Tuesday, July 19, 2016

The Final Events

This is one of the best film explanations of the last days I  have seen. Strictly by the Bible. If these scary times are causing great fear in your life, it helps to know why and what is coming.

Monday, July 18, 2016

Blood Test Reports

Received a call from my rheumatologist's office last week. Said my kidney function numbers were not great. But instead of saying if I had any problems to call them, they said this, "If you have any pain or problems with your kidneys, call your local MD." 

I've been diagnosed with systemic lupus for 22 years now. My rheumatologist in Dothan would have put me in the hospital and monitored me for this issue. The rheumatologist here told me to go to another doctor. What's wrong with this picture?! Sad thing is the local MD would have asked me if this wasn't something the rheumatologist should deal with. 

As far as health care was concerned, I was a fool to move from Alabama. Now I can't afford to move back. 

Live and learn.

Tuesday, July 12, 2016

Slowing to a Crawl

As the heat, humidity and dew point go up, and the rain increases, I slow down to a crawl. Weather beats me up. Lupus flares. Today I feel so sick. Just can't function.

Last week I saw my rheumatologist. She spent the time telling me I need to get a plaquenil test from the ophthalmologist. I tell her she needs to call in an appointment with a referral and I'll go. That's as far as it gets. Same old story every time I go. I never get a referral. I never get an appointment.

The receptionist took my vital signs. Did my blood pressure and heart rate. Said they were short handed, yet they have a physician's assistant on board. She sat in on my appointment saying she'd never met me before. However, she sat in on my appointment three months ago. I will never get use to a doctor who doesn't care.

After the two second exam, she asked me questions before sending me for a blood test. As usual, she asked if anything changed in my family's history. I told her no that my family is still dead.

When I went in for the blood test and urine test, they left me sitting there while they complained that I didn't give them enough urine. I gave them all I had. I sat there listening to them complain before I asked if I could go. Of course, they didn't have a clue I had overheard them.

I hate being a patient in today's medicine. I've grown so tired of wasting time in doctor's offices only to get a five minute "who cares" exam. So tired of the year after year pill mill. They keep juggling meds and the cost keeps going up. I'm just tired of it all.

If only they could feel the pain and suffering their patients feel. What a different world it would be.

Friday, July 1, 2016

And Some Wonder Why

I spend a great deal of time alone. I don't have any family left to call, or visit, or to fill my life. They have died. I've had to learn to be alone, to adjust to finding ways to have a fulfilling life. When I was diagnosed with lupus, I lost many friends. Say it is due to ignorance or fear of catching something you simply cannot catch, but people left. People who use to encourage me, include me in their lives, etc. They simply didn't want to deal with a sick friend. And it hurt me.

When this disease took away my ability to work, I lost more friends.  Even though I worked in a church, once I left it was as if I died. In a way I did.

I've always had bad experiences with neighbors. They were either judgmental, better than me, or spent more time involved on the wrong side of the law. I never involved myself with people like this. I decided I beat myself up enough without letting others do it for me.

So when I returned to Wilmore, I had hoped to find a better quality of people...those who were loving, kind, accepting. Instead I just moved locations. People are the same wherever you go.

But I pushed on. Always being kind and friendly to my neighbors, Doing unto others.

Tonight I stepped out onto my porch to see the neighbors across the street having a July 4th cookout. They had invited the people next door to them, the ones next door to me and the older couple on the other side of me. In fact, I was the only one who had not been invited. Quite frankly it hurt my feelings. I would probably have turned them down, but it would have been nice to have been asked. Quite obvious when you're the only one left out.

There was a sweet couple in the house next to them a year ago. She decided to have a neighborhood barbecue and invite everyone. She walked from house to house inviting everyone. I went to that barbecue even though I didn't know them. Her hospitality was kind. They moved last summer.

I never did get to know those people across the street from me. They are missionaries and have been gone for a few years before moving back last year. Yet they never attempted to get to know me either. The husband always spoke at a distance. But what shut me down was the episode of a small child who was deliberately hurt in their presence. It was last summer. I had walked outside to sweep the porch when I noticed the little girl down the road standing near the street. The girl who lived there had stood up with a large stick in her hand obviously threatening the small child. I was almost to the end of the steps when I saw the mother stand up from behind her vehicle. She had been witness to what had happened and didn't say a word to the small child.


This small girl rides her bike all over the neighborhood. She finds someone to play with every chance she gets. Never rude. Just lonely. When I saw what this family did to this girl, I decided then and there they were treating her this way because of who she was. A poor child who lived in a trailer down the street. Their actions and the mother's lack of action told me all I needed to know about their lack of character and compassion.

Having worked in two churches in my life, I've seen the other side of what goes on. How ministers and leaders mistreat, judge and make fun of people they don't feel are their equals. I guess missionaries are not immune to this type of behavior. I find myself turning away from people in the ministry, preachers, missionaries, etc. because they are just being paid to do a job. Little do they know these people they laugh at, turn away from, make fun of, etc. will be the souls in Heaven.

So I have mixed feelings. It was obviously a deliberate action to leave me out of the loop. Perhaps they thought I was not good enough for their group. Then again, how would they know? They never took the time to get to know me.

Across the street they see someone who has to stay inside most of the time because the weather affects her health so greatly, but they don't know this. Every thing I do is a struggle, from taking out the trash, to attempting to cut the bushes out front, both of which are observed by the neighbors across the street. Yet no one runs to help when I struggle. Sort of like Dothan. I always thought if I passed out in the front yard, no one would help me. I just never thought Wilmore would be so much like Dothan. If you are not useful to someone, they're not interested in knowing you. I guess it must be a world wide sentiment.

And I have no doubt another reason I am left out is I have never been married. You'd think that odd, but couples don't tend to invite single women to events. I'm sure their judgment includes much speculation even though there is nothing to speculate about.

If they had taken time to know me, they would have found out that I was engaged twice in my life. And I'm thankful I never married those two men. They would have found out I spent most of my childhood, teens, twenties and thirties taking care of sick family members until they died and working full time. They would have found out how deathly ill I became after my father's death, the last member of my family, and how most men wouldn't consider spending a lifetime with someone so sick.

But they never did. Instead it was easier to pass judgment and consume themselves with their own families.

Some wonder why I am the way I am. Add up death, disease, loss of health, etc. Add in how people treat others who find themselves different and not at their own doing. A soul can take only so much without it affecting their life.

So if you wonder why someone you know is the way they are, consider my story. And be kind to them. You have no idea where their life has been and what kind of weight they are struggling through.






Wednesday, June 29, 2016

Holding my Breath

I realized today that Friday is July 1st. We've almost made it through one month of summer. Not being a fan of heat and humidity (thanks to lupus), I have to spend the majority of my time indoors. I am amazed at how much this disease is affected by the weather - rain and cold cause my joints to swell, heat and humidity wipe me out so much I can barely stand it (plus the multitude of fevers!), and just the jump from one extreme in temperature to another causes a flare like none other.

So how do you make someone understand when you're sick, you're sick? I have been sick so much the past few weeks from the flares caused by my colonoscopy and diverticulitis. Going out in the heat makes it worse. I just can't seem to bounce back and that makes life tough for someone who is alone.

This past weekend an old college friend called me every day wanting to go to lunch or do something. I tried to explain to him how bad I was feeling, but he simply did not understand. I can't blame him for that - he's never gone through this before. I finally pushed myself Saturday afternoon and went to the college reunion barbecue since it was inside. However, Saturday turned out to be a hot one with triple digit heat index. By the time I reached the building, I was so wiped out I could barely stand. It was nice to be able to sit and talk with my friend for awhile, but once we had dinner I was back home in bed. Not only did my joints swell, and my body swell, too, but I had a headache that was unbearable. By the time I could actually settle down to sleep, fireworks exploded outside my bedroom window. I had forgotten the college did fireworks as a celebration to the end of reunion and my place is just around the corner from the field where they went off. So I pulled myself up and sat in the living room with Little Bit since she was so jumpy from the noise. Poor Rascal was already under the covers.

For the past few days I've been unable to get out of bed except to feed the kitties and myself. Nausea and vomiting added to the already wonderful experiences I'd had the past two weeks. A friend told me about her friend who was sick this past weekend. She felt so sorry for her because her husband wouldn't do anything to help her. It was as if she were totally alone. All I said was "I understand how she feels." No matter how much someone knows you are sick, they just don't get how serious the alone part is.

I find myself not wanting to go to gatherings anymore. The reality of life hit me a couple of years ago when it dawned on me the college friends I knew and loved so well were not total strangers to me. People grow up and move on. After all, it has been over thirty years. So I really don't get too excited about seeing people once again. Too, it is hard for me to sit in a group of people surrounded by their families when I am alone. It just magnifies the solitude way too much in my own life. I've grown accustomed to being alone. In fact, I like it. But when you're thrown into a group of people it is hard to readjust to being alone again on a day to day basis.

I've struggled a great deal with this horrible disease. It has taken so much of life from me. But I'm thankful for the small things I can still do even though it takes me so much longer to do them. What other people take for granted, I have to work extra hard to accomplish. Small things to some like washing dishes, vacuuming the floor, or even doing laundry take me more than a day to accomplish and that's if I'm doing well enough to walk and balance myself. I can't count the number of falls I've had this past year. Each one has left me with more areas for lupus to attack.

I still won't let it take the joyful moments I have in my life. I've learned to appreciate small things. I've learned that no matter what good intentions people have, they still won't understand when I explain I'm use to being alone and not having anyone to help me. And I've learned people will never understand unless they, too, experience what I go through on a day to day basis. I appreciate moments I can get out of the house and have a change of scenery. Those times are rare. NEVER ever let anyone make you feel bad for having to measure out your strength and abilities just because they don't understand. Sometimes it isn't worth the trouble of having to repeat it over and over again.

So I'm holding my breath until this hot summer is over. Looking forward to a cooler Fall. Wishing for a cooler winter, too.

Tuesday, June 21, 2016

Yikes Already!

Fevers have set back in again. Sunday my abdomen swelled twice its size. Fevers went up to 103 degrees again. Held on five or more hours and finally broke. Took me long enough but I finally figured out this was diverticulitis flaring. I've been having flares of it since I started the prep for my colonoscopy two weeks ago. The prep and the procedure both sent me into an inflamed system.

I was so weak Sunday night I could barely stand. Every movement I made was magnified ten times. I did fall into the bathtub when I finally made it to the bathroom. Bumped and bruised, I crawled into bed after taking ibuprofen. Five hours later I broke the fever and soaked the bed. My hair was soaking wet.

My water hose decided to explode Monday morning as I was washing off the front porch from the bird poo. They have decided my porch is a great place to rest and grab some cat food while they are there. All of a sudden a balloon appeared in the center of the hose. It exploded all over me. No rescuing that one. So I ended up going with a friend to get another one. Her air conditioning is out in her car and Monday was an especially hot day. So I spent the rest of the day in bed in front of a fan.

By Tuesday morning my joints were swollen and I was completely nauseous. Welcome lupus flare. One thing tends to set off another and add the extreme heat you get a good old lupus flare. Any extreme weather - rain, heat, cold, etc. causes my body to revolt. Seems to be more frequent these days. Although I'm use to having to take care of myself, I do feel sad there is no one there when I'm terribly sick. I also hate the fact my doctors don't seem to care about anything when I tell them. Therefore, I will suffer at home before I call them or go to the ER. I wonder why bother?

I must admit the fevers have been horrible. Just hoping somewhere down the line they will subside. I'm either freezing to death when they peak and have to find a sweatshirt or I'm soaking wet from humidity, heat and the new blood pressure medicine (one of the side effects). There has to be a middle ground somewhere, but for the life of me I've not been able to find it for years.

My college reunion is the end of this week. Temps are suppose to soar in upper 90's. Needless to say, I won't be walking in that heat to attend. Just praying God sends some good thunderstorms to cool down the air. It has been terribly dry here. Although the rain is miserable on my body, so is the heat. So you pick one or the other to endure.

I can't help but wonder what digit does the thermometer reach before I am forced to head to the ER?

Monday, June 13, 2016

Such a Beautiful Post

I wanted to share this. Just watch to the end:


https://www.youtube.com/watch?v=Dt--TNZzsxc&index=6


 https://www.youtube.com/watch?v=2WVjYn0ODdk


 Remember no man knows the day. Only God does:

"But about that day or hour no one knows, not even the angels in heaven, nor the Son, but only the Father."

Matthew 24:36




Saturday, June 11, 2016

Enough of the Fevers!!

Since the colonoscopy, I've suffered from fevers from 100 degrees to 103 degrees and not being able to break them for hours. My body is worn out. Was it the procedure? The preparation? Did it cause a bad lupus flare? I don't know if any or all the above are correct. All I know is these fevers and destroying my body. Add to it the immense heat wave already hitting KY. If I am exposed to sunshine of any kind, I get a flare. If I am exposed to heat, I get a flare. Looks like I'll be trapped inside my home for the next few months.

I've endured a lot of suffering over 22 years of lupus flares. All of the attacks are not reversible. Damage is done. Some days I think I've just had enough.

When I break out into a high fever, there is no one to get me water or help me walk to the bathroom. Last night I fell once again as I walked to the bathroom. Ram! Right into the bathtub! I'm so sick and tired of being sick and tired.

A new fever is churning. Better head back to bed before I fall from weakness!

Tuesday, June 7, 2016

Recovery Begins

Anyone going through a medical procedure suffers from the side affects. Anyone who has a chronic illness suffers a great deal more.


Sunday was rough. I woke up with a fever of 102 degrees. My abdomen was swollen and as the day went on, it doubled in size. I kept the fever all day while I swallowed the nasty Golytely prep along with ginger ale, apple juice and Popsicles. By the end of the day, I felt like I was dying! Couldn't take aspirin for the fever and since I was freezing due to the temperature, I crawled into the shower and turned on the hot water. Afterwards I put an ice pack on my forehead. Combined it seemed to bring down the temp some. Awoke at 3:00 am to take more prep and back up at 5:00 to finish it off.

Arrived at the dr's office for colonoscopy. Found out from my test eight years ago that I had suffered from colitis. They had retrieved my records from Dothan and asked if I had been treated for it. I told them it was the first time I heard the word colitis.

Note: it was a warm day outside. Unfortunately, it was warm in the exam/prep room, too. Their air had gone out earlier and was working overtime to bring it up. The actual room where they did the colonoscopy was very hot. Even though I was sweating, I still had a fever over 100 degrees. Was afraid they wouldn't do it.

Once in the procedure room, the doctor waited to speak to me before putting me out. She walked up, put her arms around me and gave me a big hug. She said she was going to take good care of me. Most compassionate doctor I have ever met. Too bad she can't be my rheumatologist.

Before I knew it, they had brought me back to the room and the nurse woke me up. I was enjoying my nap and didn't want to wake up, but there they keep you thirty minutes and push you out the door. I've had two previous colonoscopies and both places wouldn't let me go home until I passed gas. They pump you so full of air that they want to make sure you get some of it out. In Lexington, it was never mentioned.

They told me I had another polyp and sent it on to be tested. Also that the colitis wasn't inflamed. They also said I had internal hemorrhoids and my diverticulitis was inflamed as well. In other words, diverticulitis attack was what caused all the pain and fever on Sunday. I'm still having severe pains in my abdomen even though they aren't as sharp as they were Sunday.

I realized today that I had not passed gas at all since the procedure. It was late this evening that it happened. Explains why I'm so swollen still.

Unfortunately, my anesthesia nap was the only time I enjoyed sleep. Last night I couldn't sleep at all. This afternoon was bad, too. When I sat up to stand, my head was spinning. I haven't had that happen in a long time either. I realize it will take a long time to get back to normal, whatever that is. I'll just have to take it a day at a time and take it slow and easy.

So after feeding my feline friends, I'm going to bed. At least I won't fall there!

Saturday, June 4, 2016

Such Joy

This weekend is my prep for a colonoscopy. I hate this stuff. Drink nasty liquid on Sunday and early Monday. Take pills that cramp my system and make me want to throw up.

Normally I have to eat a piece of bread before taking my pills because they cause me severe nausea and acid reflux. So what do I do when I can't eat the bread??!! If I miss an entire day of meds, it will send me into a bad flare.

Sometimes I wonder if pharmaceuticals even think of patients who suffer with these issues before issuing meds for colonoscopies.

I haven't had one in four years. When I was in Dothan, they found precancerous polyps so I had to do this once a year. After four years, the doctor decided I needed to have one done. What took you so long?

I just give up. Doctors don't listen. They don't seem to care anymore so I decided to go with the flow and fight where I have to - like pain medicine issues.

I'm already worn out!

AHHHHHHHHH!!!!!!!!!!!

Sometimes I just want to scream when dealing with my rheumatologist's office. I received a call on Wednesday that my pain medication was in need of refill from the doctor's office. I thought she had written it for three months. This office has done this before. Instead it was written for two months and I wouldn't see her again until July.

I called the office and spoke to the nurse. I explained the situation and how they said that particular medicine is okay to refill electronically. She argued with me saying it wasn't. I explained how they had sent several refill requests only to go ignored. She said they didn't get any requests. In the next sentence she said it was sent to the Berea office instead of Lexington. So which one is it!?!?!

I called the pharmacy back and asked about electronic refill on the medicine and to check on the number of refills again. Two. Yes, they refill this med electronically. So I called the nurse back and left a voice mail for her to call the pharmacist and check my info. Otherwise I would be without medication for a month.

Never heard back from them. Instead I got an email from the pharmacy saying it was filled for another month.

Doctors - don't argue with your patients. Just makes them have more flares from the stress you cause. Nurses, LISTEN before you respond.

I've never had to come behind a doctor before like I have with this one. Driving me crazy!!!!

Wednesday, May 25, 2016

Searching for a Goodnight's sleep

My mattress is only a year and a half old, but my body hurts from not getting a good night's sleep. It is a good firm mattress. But since it doesn't accommodate the painful parts, the parts that swell and sharp stabbing pains that shoot throughout, I can't sleep well. I have another bed in my apartment. It is the bed my parents bought when they were married. The box springs and mattress are over twenty years old. It, too, tears my back apart.

When I get up in the morning, I cannot walk well for two hours. When I have to go somewhere I have to get up two hours earlier just to be able to walk and move the pain loose.

I've been suffering from lupus for twenty two years now and the damage it has done to my body is immense. Something as needed as sleep is a luxury now. Sad thing is lupus patients need 8-10 hours of sleep just to reduce flares and damage. I can't remember when I've had 8 hours.

I'm hurting too much to sit in the recliner, rest on the loveseat, sit in a rocker. I'm in so much pain and stiffness is so bad that I cannot pull myself up when I lie down. If only I could find the perfect bed. If only I had a sleep number bed. I've heard how wonderful they are for those who suffer with chronic illness. But how on earth could I ever afford a sleep number bed? The cost of living is hard enough added on to twenty prescriptions to fill. I'll just have to wish and dream for one someday.

Until then I am thankful for the rare few hours I can sleep. It is with sleep I leave the pain behind and hope for peace and serenity.

Oh gosh how I hurt!

Friday, May 13, 2016

Where did April Go?

I can't believe it is already May 13th. Where did April go? They say time flies when you're having fun, but for the past few weeks, I haven't been having fun. Struggling through the crazy weather patterns in KY. Heavy rain, very warm temps dropping to freezing soaring up again. This weather has literally beat me up. The pain is worse when the temperatures drop. Tomorrow night temps are dropping to the 30's again.

The only time I've been out is when I go to the doctor. Lately I go to the doctor more often. Now I'm scheduled for a mammogram and colonoscopy. I've been here four years and the doctor noticed finally that none of these things have been done. My last colonoscopy in Dothan showed precancerous polyps.  Who knows what they'll find this time.

I have many thoughts on cancer. First, if I am ever diagnosed, I don't intend to take chemo. I experienced what my brother went through when he had to go through chemo. It didn't prolong his life. Just made him super sick and weakened his body more. So I don't intend to do this. So why have a mammogram or colonoscopy? It will only tell me what I have or don't have. If I had a family, any family, I'd consider it. But being alone in the world doesn't exactly give me a desire to prolong the inevitable.

I'm so tired today. Still adjusting to the new blood pressure medication. Have been able to sleep better the past two weeks and wonder if it is due to the side effects. Just thankful for sleep.

The crazy black crows are back this Spring. They have been eating me out of cat food. I've already gone through two bags this month. Forget about hiding the bowl. They can sniff it out. Add to the issue that Buddy and Tom do nothing to run them off. They just sit on the porch and watch. Buddy is more interested in chasing other neighborhood cats and dogs. Poor Tom is just so feeble now.

I feel the rain coming in. My joints are swelling again. Found it hard to hold a needle and thread last night. It is hard when you suffer from a disease like Lupus, plus the other conditions spawned from it. Life is hard enough dealing with illness, but add being alone and you find it nearly impossible.

How on earth do people make it through without faith?!

Wednesday, April 27, 2016

And the Saga Continues

It had been almost a week before I realized I never received my new medication. No one ever called in a prescription. So I called the surgeon's office to find out why.

The nurse told me there wasn't a note concerning blood pressure meds. She out me on hold to find out what was going on. When she returned, she said the doctor wanted to talk to my MD here and hasn't had time. He would call tomorrow.

In other words, he forgot.

I received a call from the surgeon's office. They had spoken and will call in the prescription today. Also wanted me to call and make an appointment for two weeks to MD. Also the surgeon wants an EKG so another trip back to Lexington next week.

I'm tired, stressed and wish I could dig a hole and crawl in. Doctor stress is more dangerous than med side effects.

Friday, April 22, 2016

A Friday Post

It has been a whirlwind of health issues, doctor stresses and medication changes.

Last week my rheumatologist's office called. I couldn't answer the phone at the time and no message was left. It was 5:30 on a Friday and all had gone home by the time I returned the call. To me it is just as aggravating as receiving something in the mail that needs to be returned ASAP, but you can't call to ask questions for two more days. I spent Friday night searching for my appointment cards to make sure I had not written down a wrong date. It was 2:00 a.m. Saturday before I could relax and sleep. I assured myself if it was important someone would call back on Monday.

Monday came and no call so I just wrote it off. On Wednesday, I received a letter in the mail from the rheumatologist's office. It said my blood test had some very high marks on it and I needed to call them ASAP. So I called and found out they were in Berea that day. This is one of the most troubling parts of having doctors in KY - they are mobile. Never in the office every day. Always somewhere else when you need them. So I left a message.

After worrying some more and knowing how unreliable this office is in returning calls, I called back and spoke to the receptionist. She was kind enough to check my files and find out what the urgency was. When she found the file, she said my numbers were really high and to continue taking the antibiotic. She said she didn't understand why they sent an urgent letter.

Now keep in mind my appointment was April 4, This is the same day I had a blood test. This is the same day I begged for antibiotics because I had an infection in my lower jaw (people with lupus have very bad dental issues even though we take good care of our teeth). No infected teeth, just infection in my jaw that had run down to my lymph nodes. The infection had caused a severe flare from the lupus. The other instruction was if it happens again to go to a dentist.

This doctor and I have had several conversations about not being able to afford a dentist. No insurance I have covers it and I don't have the funds to see one. So I'll suffer when it happens again and be put in a position for begging for antibiotics again.

The first phone attempt was last Friday and the letter received April 20th. No test results received in the mail at that point. Good to know they would eventually call if there is an issue (pause for sarcasm).  No one ever returned the message I left on voice mail to the nurse.

When I was in Dothan, I was used to having a doctor's office that took care of everything and I just showed up. I never had to chase down test results or ask for assistance, or even have to suggest my own treatment. They took care of that. Also the office went beyond the call of duty when my rheumatologist would go out of his way to help me find resources to pay for my medication the first two years I was uninsured.

I haven't found one doctor like him since. Medically, I regret moving and would be happy to go back just to get the medical treatment I need. Doctors here don't spend enough time with you to know who you are or what you need. You're just a chart of numbers from blood tests.

Yesterday I saw my thoracic aortic surgeon. I had been to this place three times in a course of four years and each time I saw a different doctor who had taken the place of the one before. The first one was wonderful. Took full interest in my history and spent a long time getting to know me. The next time I went back he had gone and was replaced with a doctor who spent five minutes with me. "All okay, just come back in a year," he said.

I was so upset that I let two more scans pass by before I tried it again. Another new doctor had taken the bad one's place. I found out the second one didn't stay long. I wonder why!

Started out with a friend taking me to the visit in hopes it wouldn't be a long one. Low and behold, he had emergency surgery early that morning causing him to arrive late. There was a woman there who had waited more than two hours. She spent the entire time complaining about everyone and everything. Even cursed out the ladies at check in. She was ahead of me in line so I knew once she went back she would complain the entire time and then waste valuable time for everyone else. Thing is she didn't have an appointment.


 Gosh it must be awful to hate everything in the world!

It was two and a half hours before I saw the doctor. He was a 34 year old nerd. The nurse who checked me in had nothing but praises for him. Said he graduated top in his class. She also filled me in on the previous doctor.

My catscan showed an aneurysm 4.7 cm. He said we are not close enough for surgery. Must be 5 cm. He said it was a hard surgery for anyone to endure let alone someone who was sick as I was. His treatment was for maintain a low blood pressure and low cholesterol to prevent the aneurym from growing. My blood pressure was 158/85 yesterday, much higher than normal. Has been a trend lately. Also a high heart rate. So he decided to put me on a blood pressure medication to lower the heart rate and blood pressure. Referred the info to my regular MD. So who knows when they will get around to it. I told him about my surgeon in Alabama who hesitated surgery because of the lupus. This doctor said he wasn't afraid of the lupus.

I asked him if he would be there when I came back for the next scan and he said he wasn't going anywhere. Some hope.

If you're having to go to a multitude of doctors, having them get to know you and what you need is a rare treasure. I didn't know how much until I moved to KY. If I could afford to go back to Alabama and restore my medical care, I'd do it tomorrow.




Monday, April 11, 2016

Yo Yo!

It has been a weather yo yo weekend!! Dropped down to the twenties, snow showers early Saturday morning, and cold enough to wear a sweater and coat on Saturday. The rain has come back in making it a miserable existence where pain is concerned. Sometimes I think it just isn't worth it to keep pushing on. 

I want to be able to clean my place the way I used to, to sit in the sun, enjoy being around people. I just want to be normal, whatever that is. What takes a normal person a few hours to do laundry takes me two days. 

I'm also coming off the doxepin. Thankful to be off that horrible stuff, but feeling the effects of it. I feel like a layer cake. Base is fine, add a layer of lack of sleep, a layer of chronic pain whether it rains or not, a layer of fevers off an on, a layer of aloneness (and sometimes loneliness), and ice it with the struggle of day to day simple tasks. I just hurt inside and out. 

Today is one of those days where I wish I could go home, the place where I grew up. Wish I could walk in the back door and see Mama at the stove, Daddy in the living room and my only brother with him. Wish I could feel that "Ahhhhhhhhhh" you feel when you go home, a feeling that no word can describe. Since they've been gone no where I've lived has felt like home. It has merely been a roof over my head. Today I just wish I could go home.

This week I have a cat scan. Haven't checked the thoracic aneurysm in two years. See a new doctor next week. Seems like that's the way medical care works here. You get a new doctor every few years instead of having a choice of staying with someone who knows your history. Many of them don't care enough to get to know you. Nothing like the doctors I had in Alabama. I miss my rheumatologist. 

I miss so much from home. One thing you learn when you move away is that people are all the same. Most are just focused on their own family. I've learned many things by experience. The rare person who cares enough to stick by you is a treasure. They are few and far between. I'm thankful for the few. 

When I get sick like this, I tend to feel sad. Today is just a sad day. Time to go to bed and pull the covers over my head.