Thirty plus years ago, something happened to Mom.
She came to the breakfast table and couldn't sit down for the pain. She couldn't turn, she couldn't bend, she couldn't move.
I think it's an understatement to say we kids were concerned and scared.
And our family slowly morphed into a new normal.
Mom would have "flair-ups" periodically after that. Sometimes they would last 2 days; sometimes a month. We learned that extensive housework (washing windows, mopping all the floors) made them worse, though we never quite seemed to convince Mom of that. Sometimes we were awesome children and would try to beat her to some of the chores to spare her back. Sometimes we didn't.
The doctor's treated for rheumatoid arthritis, though the bloodwork consistently showed she did not have it, and their treatments often helped. But not always. With no proper diagnosis and Mom's low tolerance for medicine, we had more than our share of interesting experiences at our house.
Fifteen years passed, my parents moved to SC, and a doctor filling in for Mom's regular doctor was NOT happy when he saw her huge chart. He began grilling her about her health, asking very specific questions that no doctor had ever asked her. He then asked her if she would be willing to undergo a round of tests. He suspected an auto-immune disease in the rheum-family, but wouldn't know until tests were done. He was right. For the first time we had a diagnosis (sjogren's syndrome), and as we read and researched, many things started clicking and making sense about her health that had puzzled us for years. He referred her to a rheumatologist, she began treatments, and for the first time we saw her health improve in many areas. The craziest part of it all? When her regular doctor came back, he was FURIOUS, told her this was all in her head, and chewed out the other doctor for trying to "take over" his practice.
Sadly, this reaction became norm. With every pastorate came a new doctor. With each new visit, she would hear "Oh, you don't have that. I'm sure you really have x,y, or z." And the bloodwork would be done again and again and again. Each time, her numbers would come back off the charts for sjrogen's. But more often than not, she would hear, "Well, you also have this, so let's focus on it."
Yesterday, she met with a rheumatologist who specializes in several auto-immune disorders that are in the same family. And for the first time since that first doctor, Mom felt like she got answers. And I think he was the first doctor not to say "Who told you had sjogrens?" or "You don't have that..."
At this point, we don't know if it's totally sjogren's or lupus, but we do know the treatments are the same for both disorders. He actually took the time to explain to her what many of us have been trying to tell her, that medicines have multiples uses. Just because a medicine says "anti-depressant" does NOT mean that is all it can be used for, nor does that mean it's being used to treat depression. He actually explained that to her in terms she would understand, and agreed that if it caused emotional changes then she needed to stop taking it.
And like Mom said last night, "I really don't care what this is called. I just know I need help." I don't care if they name this illness cookie breath, I just want her to find something that will help alleviate some of her pain. Realistically, I know she will never be totally pain-free again on earth. But I would like to see her have more than two good days a week.
It's been over thirty years. The fear doesn't grip me like it did then. But my heart still aches for her.
She came to the breakfast table and couldn't sit down for the pain. She couldn't turn, she couldn't bend, she couldn't move.
I think it's an understatement to say we kids were concerned and scared.
And our family slowly morphed into a new normal.
Mom would have "flair-ups" periodically after that. Sometimes they would last 2 days; sometimes a month. We learned that extensive housework (washing windows, mopping all the floors) made them worse, though we never quite seemed to convince Mom of that. Sometimes we were awesome children and would try to beat her to some of the chores to spare her back. Sometimes we didn't.
The doctor's treated for rheumatoid arthritis, though the bloodwork consistently showed she did not have it, and their treatments often helped. But not always. With no proper diagnosis and Mom's low tolerance for medicine, we had more than our share of interesting experiences at our house.
Fifteen years passed, my parents moved to SC, and a doctor filling in for Mom's regular doctor was NOT happy when he saw her huge chart. He began grilling her about her health, asking very specific questions that no doctor had ever asked her. He then asked her if she would be willing to undergo a round of tests. He suspected an auto-immune disease in the rheum-family, but wouldn't know until tests were done. He was right. For the first time we had a diagnosis (sjogren's syndrome), and as we read and researched, many things started clicking and making sense about her health that had puzzled us for years. He referred her to a rheumatologist, she began treatments, and for the first time we saw her health improve in many areas. The craziest part of it all? When her regular doctor came back, he was FURIOUS, told her this was all in her head, and chewed out the other doctor for trying to "take over" his practice.
Sadly, this reaction became norm. With every pastorate came a new doctor. With each new visit, she would hear "Oh, you don't have that. I'm sure you really have x,y, or z." And the bloodwork would be done again and again and again. Each time, her numbers would come back off the charts for sjrogen's. But more often than not, she would hear, "Well, you also have this, so let's focus on it."
Yesterday, she met with a rheumatologist who specializes in several auto-immune disorders that are in the same family. And for the first time since that first doctor, Mom felt like she got answers. And I think he was the first doctor not to say "Who told you had sjogrens?" or "You don't have that..."
At this point, we don't know if it's totally sjogren's or lupus, but we do know the treatments are the same for both disorders. He actually took the time to explain to her what many of us have been trying to tell her, that medicines have multiples uses. Just because a medicine says "anti-depressant" does NOT mean that is all it can be used for, nor does that mean it's being used to treat depression. He actually explained that to her in terms she would understand, and agreed that if it caused emotional changes then she needed to stop taking it.
And like Mom said last night, "I really don't care what this is called. I just know I need help." I don't care if they name this illness cookie breath, I just want her to find something that will help alleviate some of her pain. Realistically, I know she will never be totally pain-free again on earth. But I would like to see her have more than two good days a week.
It's been over thirty years. The fear doesn't grip me like it did then. But my heart still aches for her.
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