Sunday, August 30, 2015

What NOT To Say to a Lupus Patient

I'm down to one doctor now, but not by choice. On Thursday I went to my rheumatologist. The nurse said I looked like a truck ran over me. She wasn't far from the truth. I felt like one ran over me! It had been a hard week, a hard month. I'd fallen twice, couldn't sleep from pain, and that made the pain worse. I was swollen all over, especially my feet. I was one sick puppy. She said my blood pressure was 110/60 so it was good. For me, that is low, a bit too low. I knew then it was showing up. 

I was glad this had hit Thursday. The doctor would see how sick I was. She was also planning to run blood tests that day so I prepared ahead of time. My system was empty and ready to go. 

When she came in, she said, "Don't take this the wrong way, but I don't seem to be doing much good for you. I think you should see another doctor."

I was so stunned that it took me awhile to make sure I heard her correctly. No other doctor ever said that to me before. One came close. He sent me to a rheumatologist when he suspected lupus because he just had a lupus patient die and didn't think he could go through it again. Best thing he ever did. At least he had a reason. 

I ran through my memories to double check how my behavior has been in her presence. I was respectful, followed her orders, participated in treatment. I was never ever rude to her even though it was the most disorganized office I ever had to deal with. 

So I told her this, "I don't expect you to heal me. I know this is the nature of the beast. I also know there is no cure and you can only treat the symptoms. I've suffered from this for twenty years and accepted the truth a long time ago. What am I suppose to do for the medications only a rheumatologist can give me?

"Well," she said, "That is up to you. I don't really have another doctor to refer you to." 

And that was basically it. First I know if a sentence begins, "Don't take this wrong" it was meant to be wrong. Second a doctor isn't suppose to behave this way and I never gave her cause to do this. 

Thinking back I realized she only did one urine test in the two years I saw her. It is extremely important to check the kidneys of a lupus patient, especially one who has had the disease as long as I have.

I walked out of that office suffering in the same pain I walked in with and blaming myself for what she did.

Two days later I began to wonder if this was something she was doing for herself. Was she tired of the red tape of Medicare? Was she quitting being a doctor? Was she moving? Does she think if she can't cure you, it isn't worth her time?  If any of the above was true, she should have told me so and not let me beat myself up for what she did. It had to be something personal on her part. After all doctors these days take everything personal. 

The medication will last three months because that is all doctors write them for now. After that I'm without medication for lupus. I know the medication has kept me alive over my allotted time (I was given ten years on diagnosis). Without it, I'll go down and I know this. I'm tired of going through doctors like water flows down a waterfall. I'm done.

I don't have a thoracic surgeon either. Nor an opthamologist to keep check on my vision and plaquenil tests. The rheumatologist never referred me to anyone, but expected me to find someone on my own. Never ever had doctors do this before.

The thoracic surgeon I found when I moved here was gold. He was kind, compassionate, caring, educated. Then he moved to Princeton to be a professor. He was replaced with a man who spent five minutes in a room with me, glanced at the cat scan and said see him in a year. Did not bother to find out any history or background. Acted like he didn't want to waste his time. When a year passed, his office never called to schedule another cat scan. December marks two years since the aneurysm near my heart has been checked. 

I am down to a basic MD. He knows only what the chart shows. Asks me the same personal questions every time I go in. Do I have family to check on me? Do I live alone? Etc. After a year and a half you'd think he'd get a clue. 

If you are a doctor and are reading this, don't treat your patients like this. They are human beings with feelings, suffering or they wouldn't be seeing you in the first place. No one expects you to be God. There is only one God and you're not it. Stop acting like you are. 

All I know is this: if I don't find a way back to Dothan where I can acquire proper medical care,  I won't be on this earth much longer. The problem is and always has been one thing: the cost of a move is more than I can afford and I don't have anywhere to go. If you know of a solution to this problem, please let me know! At this point I need a full fledged miracle!

Sunday, August 23, 2015

Touch of Fall

Two days ago we had a touch of Fall weather. It was in the 50's at night and 70's during the day. Oh so nice. The heat has returned and today I feel miserable. My doctor's appointment is Thursday. Have a list of problems to share with her. I never expect much when I go to the rheumatologist here. I think she's like the rest - record keepers.

It is almost the end of August - thank you, Lord, for getting me through the worst of the heat!! Thank you for the taste and promise of cooler weather ahead. So looking forward to getting rid of summer!

It has been a long month and as usual I've got too much month and not enough money left for food. Either I don't have enough cat food or people food and this month it hit on both! Today I prayed for food. God has always taken care of me and know He won't let me down. Just keep reminding myself, "Do Not Be Afraid!

Thank you, Lord, for caring for us!

Monday, August 17, 2015

Summer is Still Here

Yes, it is still summer! I've never been a fan of heat and humidity even though I grew up in Southeast Alabama. With a chronic illness, heat and humidity are unbearable! Weather goes up and down with barometric pressure going up and down. Feels like I'm being squeezed in a vice! My right foot was so swollen last night I could almost feel the bone inside of it breaking (felt like it was breaking). Pain in my left shoulder, down the back of my neck, swelling all over my body. Oh gosh has it been a miserable summer for me!

I keep my eye on the calendar. Fall is coming. Humidity will lessen. Temperatures will drop. I look forward to the day I can put my electric mattress pad and electric blanket on the bed at the same time. It makes sense that heat helps relieve the pain, but in the summer you can't stand the heat. I've kicked my sheet off too many times at night from sweating.

It has been a blah day here. Rain is trying to set in and it has been uncomfortable. So has trying to sleep. Just wish I were normal and could sleep every night the entire night through. But I can't seem to do it. This morning I woke up at 3:30 a.m., fed Buddy outside and went back to bed. It was 10:00 a.m. before I fell asleep again only to sleep for an hour. It adds up over time. With a chronic illness like lupus, you're suppose to get at least 8-10 hours of sleep a night just to function at all. No wonder I've been so sick this summer.

Winter predictions are the same as last year - heavy snow and cold cold cold! I developed a lung problem last winter and suffered greatly from the cold. I don't think my poor body can go through another winter like this in KY. Can't breathe. Can't get out of bed. Can't do normal every day things. I have to find a way to get back to S.E. Alabama and a place to call home again. The cold is killing me, literally.

I'm getting ahead of myself again. One day at a time. One day at a time. Worrying about tomorrow will not help today.

When the cold nights set in late September, I'll put the mattress pad and electric blanket on the bed. My kitties will curl up at the foot and we will do the best we can. I look forward to turning off the fan and curling up in comfort. 

Saturday, August 15, 2015

Random Thoughts

It has been a difficult week around here. If it was meant to go wrong, it did. I had to deal with customer service for several different reasons in several different circumstances. All of it bad. 

And I fell again. Stood up from bed and fell into a chair by the bedroom door. The arm of the chair stabbed me in the abdomen. That makes two falls in two weeks. My balance is getting worse. Thanks a lot, systemic lupus!

I've been inside all week except when I took the trash can to the end of the driveway. It has been a lonely week.

I once told a friend, "I have no life." She laughed. She's known me for three years now and should know it wasn't meant to be funny. It is a fact. I have no life. Most of the time I can handle it. Some days I can't. It is overwhelming when you're sick and can't go anywhere or do anything fun. Seems like the only things I do anymore is go to the doctor and once a month to the grocery store. Wheeee!!!!

This is a personal blog filled with personal experiences so I have to use "I" and "me" a great deal to get the point across. In a group of people or one on one, I'd rather be talking about what's going on in the world or other places and things. Not interested in gossip. Not interested in listening to someone spend an hour talking about themselves. That gets old fast. 

Being a hermit isn't such a bad idea now is it? Some days I'd rather be alone with my kitties than go out with people and listen to them talk nonstop about themselves. I never say much because it just isn't worth it. No one asks how my week has gone or what I'd like to do. They just blather on about themselves. 

Being a listener isn't a bad thing either except when people take advantage of it. I've encountered more people in KY than any other place who want me to sit and listen to them talk. When someone needs someone to listen, I don't mind one bit. If they want my advice, I'll give it. Otherwise I tend to tune out the "I ME" conversation. When did this world become so obsessed with themselves? 

I know it sounds bad to say all of these things, but I'm on the edge today. I've had enough of rude people and self centered talkers. My mother's baby sister was a self promoted talker. When she called our house, most of us ran the other way. We knew we'd be on the other end saying, "Uhu" never getting a word in edge wise. 

I say this in hopes someone will take note of how they come across. Most people don't mean to be selfish and some do. When it all comes to a head, that's when I bail. Just can't stand it. Add it on to a week of illness, lack of sleep, severe pain, fevers, and you'll understand how it can build to a head in no time. Noticed my patience is getting thin these days. 

So when you're in a conversation with someone else, try asking how they are doing and truly listen. You may be the only person they come in contact with that day. They don't need your self entertainment. They just need someone to care. I know I do. 

Since I cannot drive (due to this stupid illness), I'm pretty much stuck. Tonight if I could, I would have jumped in the car, put the kitties inside and drove until I ran out of gas. Some days I'd like to just disappear off the face of the earth. Hate feeling that way. Trapped and nowhere to go. It scares me sometimes. I wonder how much longer I can stand it. 

To sum it up, I'm sick. I'm in pain from a fall. I haven't slept much due to flares. I'm tired of fevers and swelling pain. I need someone to listen to me as much as others do. And I feel alone in the world. 

So what do I do? I watch Kevin Spacey and smile. Poor Kevin!

Monday, August 10, 2015


Sometimes I wish I had a normal body, a normal life, a normal schedule. But I don't. My body is sick and broken. Things others take for granted, I'm thankful for like sleep. This horrible disease has stolen what this world calls a normal schedule, a normal life.

So when your life becomes "abnormal" according to the world, you have to see yourself in a different light.

What is normal? Who sets those standards? Every person's life is different and the struggles they face in life are different as well. Life is hard. Add illness to it and it becomes harder.

So why do some people enjoy making other's lives so much harder? I wish someone would explain it to me. Don't they know gossip destroys a person's opportunities? If someone hates themselves so badly, why do they have to step on others to make themselves feel good?

Gossip does so much damage. The guilty gossiper goes on about her/his life without a thought to what they said, how much damage it did, and simply does not care. They leave behind them destruction that is beyond repair.

Be careful who you trust. A listening ear comes with a loose tongue. I wish I had learned this lesson early in life, but I've been the object of destruction from a lying, loose tongue. Now I don't say much. Not worth the chance it takes to trust again.

I'd rather be around animals! God's innocent creatures.

Another thing that bugs me is self centered people. You can spot them easily. They're the ones who talk about themselves over and over and over again. I had an aunt like that. Every time she called the house, we'd all run away from the phone. Wish all people would stop thinking of themselves as God's greatest creation and look beyond to those who are around them. Many people struggle every day, but some people are so wrapped up in their own selves they can't see it. What a lost opportunity.

The church is full of this type of people. Entertain me. Listen to me. Find me a spot. Me, me, me, me! I'm so sick of that word. It is filled with people who are so consumed by themselves they don't recognize the pain in lives outside of the building. Don't get me started on "Me" sermons. You can lock yourself in today's church and be just fine. Problem is the place of the church is to train Christians to go out in the world and preach, teach and live the Gospel. I can say I haven't experienced the latter in a long time.

Sometimes I wish people were more kind and caring like they use to be. I long for a time when neighbors checked on each other, when people went to church to worship God and not get entertained or become a place of habit. Whatever happened to people caring about others?

This world is becoming a dangerous place to live, more so each day. If there are no people who care about their neighbors, to take action, to literally live their faith, what will happen to those who are alone, vulnerable, and weak?

Sometimes I wish......but then I realize wishing is a waste of time. So I pray God will open the eyes of those who sit complacently by and do nothing. 

Saturday, August 8, 2015

Ouch Ouch Ouch!!!

No sleep. Severe headache. Hurting body! It has been a rough night and rough day today. I slept two hours.

Common problem with sytemic lupus patients. Insomnia. Headache. PAIN! But how on earth can you tell someone exactly how bad you feel and that you're so thankful to fall asleep on days like this? If they don't experience it, how can they understand?

When I finally found relief in sleep, my phone rang. Sometimes I hate to hear the sound of a phone ringing, especially when I hurt so badly. The ringing vibrates through my entire body. Of course, it was a telemarketer. Sometimes I just want to scream "STOP IT!"

While most people are so busy acquiring things to make themselves happy, I'd be very happy just to be pain free and rest a full eight hours. 

Friday, August 7, 2015

Just a Thought

August - finally! We're weeks away from summer coming to a close. Thank heavens! This summer has been a battering old fiend to my body. Rain, heat, humidity, drop in temp, start over again. And it has been the worst summer I've seen for fleas! My little girl ran out three times this summer and when I finally caught her, she brought in fleas. I've battled fleas on her, on Rascal and myself for months. Can't wait for the cold air to return and rid us of fleas, flies and mosquitoes.

For the record, Capstar flea pills have been my rescuer. They truly work. Problem is they are so expensive. If I could stock up on these I would do so.

I noticed something the other day. Anyone who knows me knows I've had a difficult time going back to church after working in one (or two). You see things and experience things that you just shouldn't. Either you truly find your faith in God or lose it because of the way people treat you. Thankfully my faith in God strengthened.

I have a hard time wanting to sit in a church service that is arranged for entertainment. Orchestras, repetitious songs shown on the big screen, no hymns, a sermon full of personal stories and jokes with only one mention of the Bible. I can now add one more thing that turns me off of today's church.

More and more people swarm to Bible studies only to spend that time with someone else's workbook or guide book instead of the Bible itself. There are many Christian authors in publication today and the church is turning its teaching to the guidebooks. It all boils down to this: the book is merely their opinions. Everyone has an opinion. These people are earning a living stating and explaining their opinions.

Personally I'd rather do my study straight from God's word. No opinions, no guidebooks, just Him. The living word is just that - living. Every time I read God's word, I learn something new. So why are we as a Christian nation relying so heavily on someone else's opinion?

It isn't for me. As for going to church, I see it as worshipping God. In song, in love, in His word. Simple enough. That is enough for me. Too much world in God's house of worship these days. Sad to say but I just don't feel welcome in what the world calls church when the world seems no different than the church itself.

Life is hard enough being on your own. If I didn't have my faith in God, knowing He is my salvation, my provider, my friend, I would have been lost a long time ago. Thank you, Lord, for loving me when no one else does. When my body has finally passed on, I hope those who truly know me will know I'm with the Lord God Almighty.