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!

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