WARNING: If the date is prior to Friday, April 15, you are my reader, you know my mother, and you think you might be tempted to tell her about my blog, stop reading this post right now. Momma does not need to worry when there may be nothing to worry about.
Last Sunday morning, before leaving to go to Deat's parents' home for a couple days, P.D. developed a rash on her face, for the third time in the last 6 months.
I took her to the pediatrician's office the last 2 times, and on the first visit I took the Nurse Practitioner I was speaking with into the next room to explain about her Daddy's Lupus and ask, “Could this rash be Lupus related?” She assured me it was a contact rash, gave her a steroid shot and some hydrocortisone and sent us on our way. WHEW!
So, this time, since their grandparents wanted to see the girls and I had a counseling conference to attend Monday and Tuesday, I sent the hydrocortisone with P.D. and didn't worry about another doctor visit. Been there, done that, right?
Monday night V. (Deat’s Mom) called me to say that Deat had a similar rash when he was young. He also said she had often kicked herself thinking that the rash was the actual first Lupus symptoms and she hadn't pushed it then.
She was very convincing, and I, quite frankly, freaked. I felt my throat close up. I couldn't talk. It's one thing to stand beside your partner and try to battle an illness... it's quite another to have your mind take you back to the worst 7 months of your life, (particularly the scenes from the last 2 of that 7 months) only seeing those scenes with your BABY in the hospital bed. It took me forever to calm down enough to remember that I'd asked about Lupus the first time the rash appeared and to tell her that. V. apologized for upsetting me so much.
V. called me again Tuesday night saying the same things… nothing new to add, only reinforcing my fears. Me thinking: It took me 24 hours to calm down from our last conversation and you just wanted to call to make sure I was sufficiently worried?
Backtracking: a few weeks after Deat died, crazy with fear, I called his rheumatologist about having the girls tested for Lupus. She said "No. The girls might have all the markers for Lupus but it may never ever flare. Don't drive yourself crazy. If it flares, you'll know it and we'll deal with it then."
I picked up the girls from their play rehearsal Wednesday (I was at work when they brought them home.) and later that evening V. called with the same concerns again... at which point I nearly lost my cool with her. "V., I said I would handle this, and I will."
I spoke to Doctor B. (a doctor from home I consult with about nearly everything) the next morning and explained my concerns: this could very well be a contact rash and I'd be putting myself (AND P.D.) through all this fear for nothing... but the tests could still say the markers were there... I can't begin to describe how frightening that is. Doctor B. said it might be a good idea to take P.D. to a dermatologist to let a trained eye look at the rash.
So, I called her pediatrician for an appointment to get the referral. I then called my in-laws to tell them what had been done. Lest you think otherwise, I'll just say, I adore both Deat's parents, and they love me. They've been through so much, I know they weren't trying to scare me, they were just scared themselves. I apologized for being so short with V.; I explained that the repeated calls felt like she didn't think I heard her the first time, and I told them I would keep them informed at every step.
I will tell her all about this when I know more. IF you read this and tell my mother, you can rest assured not only will she call me in a complete state of panic, she will tell me who told her and I will come down on your head with the wrath of the Apocalypse.
If you don't know my mother, or feel assured you can wait a few days to let me tell her, by all means, keep reading.
Last Sunday morning, before leaving to go to Deat's parents' home for a couple days, P.D. developed a rash on her face, for the third time in the last 6 months.
I took her to the pediatrician's office the last 2 times, and on the first visit I took the Nurse Practitioner I was speaking with into the next room to explain about her Daddy's Lupus and ask, “Could this rash be Lupus related?” She assured me it was a contact rash, gave her a steroid shot and some hydrocortisone and sent us on our way. WHEW!
So, this time, since their grandparents wanted to see the girls and I had a counseling conference to attend Monday and Tuesday, I sent the hydrocortisone with P.D. and didn't worry about another doctor visit. Been there, done that, right?
Monday night V. (Deat’s Mom) called me to say that Deat had a similar rash when he was young. He also said she had often kicked herself thinking that the rash was the actual first Lupus symptoms and she hadn't pushed it then.
She was very convincing, and I, quite frankly, freaked. I felt my throat close up. I couldn't talk. It's one thing to stand beside your partner and try to battle an illness... it's quite another to have your mind take you back to the worst 7 months of your life, (particularly the scenes from the last 2 of that 7 months) only seeing those scenes with your BABY in the hospital bed. It took me forever to calm down enough to remember that I'd asked about Lupus the first time the rash appeared and to tell her that. V. apologized for upsetting me so much.
V. called me again Tuesday night saying the same things… nothing new to add, only reinforcing my fears. Me thinking: It took me 24 hours to calm down from our last conversation and you just wanted to call to make sure I was sufficiently worried?
Backtracking: a few weeks after Deat died, crazy with fear, I called his rheumatologist about having the girls tested for Lupus. She said "No. The girls might have all the markers for Lupus but it may never ever flare. Don't drive yourself crazy. If it flares, you'll know it and we'll deal with it then."
I picked up the girls from their play rehearsal Wednesday (I was at work when they brought them home.) and later that evening V. called with the same concerns again... at which point I nearly lost my cool with her. "V., I said I would handle this, and I will."
I spoke to Doctor B. (a doctor from home I consult with about nearly everything) the next morning and explained my concerns: this could very well be a contact rash and I'd be putting myself (AND P.D.) through all this fear for nothing... but the tests could still say the markers were there... I can't begin to describe how frightening that is. Doctor B. said it might be a good idea to take P.D. to a dermatologist to let a trained eye look at the rash.
So, I called her pediatrician for an appointment to get the referral. I then called my in-laws to tell them what had been done. Lest you think otherwise, I'll just say, I adore both Deat's parents, and they love me. They've been through so much, I know they weren't trying to scare me, they were just scared themselves. I apologized for being so short with V.; I explained that the repeated calls felt like she didn't think I heard her the first time, and I told them I would keep them informed at every step.
Friday, at the pediatricians: This time I had the doctor instead of the PA. I explained the whole story to her and she got this very concerned look on her face. She told me the PA had not noted my Lupus fears in P.D.'s chart. I showed her where in the initial registration with her office I had listed everyone of Deat's health issues in the history. She immediately wrote a prescription for all the blood work. I think she was scared. I know she scared me. We'd have to go to the hospital Monday morning (today) to have the blood drawn. I hid it from the girls, but I felt like I was in the verge of a nervous breakdown.
Over the weekend I had some time to process all this. (I talked to a friend who went through Deat's illness with me, then I had class, breaks and lunch with a bunch of friends who also happen to be counselors-in-training. Kinda makes it easier, huh?)
I realized that even if the diagnosis comes back positive, it doesn't mean I'm looking at a repeat of what we went through with Deat. (If you're interested, all the updates from his illness are logged at: What Happened) Deat was in denial before we discovered that his kidneys had shut down. Deat's Lupus had been out of remission and flaring uncontrolled for quite a while before we found it: long enough to completely destroy his kidneys, and that takes some time.
If P.D. has Lupus markers, and she has a flare, it won't go unchecked. She's not her Daddy, she can't just explain away any symptoms I see. I CAN "make" her go to the doctor. Just saying those things out loud did wonders.
So, yesterday afternoon: I explained to P.D. that we were going to the hospital to have the blood drawn. I told her that if she had questions she'd have time to think of them and ask me. She had a few, mostly about how much it would hurt. She also later came and asked if she could take her "Daddy Blanket" (a quilt I had made for her from her Daddy's shirts) with her for comfort. She had a hard time sleeping last night...
I kept waiting for the inevitable "BIG QUESTION" but it never came, so I asked her this morning,
"P.D., do you know why they want to test your blood?"
"Yes, for Lupus."
WOW. Such perspective. My baby is smarter than her Momma... she's taking things as they actually come. She was more worried about a needle stick than finding out she may or may not have Lupus. She was very brave when they drew her blood.
I am so lucky to have that kid. I still don't know why in the world God saw fit to bless me as much as He has with her. The blood tests will come back Wednesday, possibly as late as Thursday.
I think I'm finally in a frame of mind to handle whatever they say.
I kept waiting for the inevitable "BIG QUESTION" but it never came, so I asked her this morning,
"P.D., do you know why they want to test your blood?"
"Yes, for Lupus."
WOW. Such perspective. My baby is smarter than her Momma... she's taking things as they actually come. She was more worried about a needle stick than finding out she may or may not have Lupus. She was very brave when they drew her blood.
I am so lucky to have that kid. I still don't know why in the world God saw fit to bless me as much as He has with her. The blood tests will come back Wednesday, possibly as late as Thursday.
I think I'm finally in a frame of mind to handle whatever they say.
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