Aww. My insurance company is so adorable. Calling me incessantly about asthma until I agree to be in their wellness program... At least now the calls are going to be monthly....
Today's callback was from an RN at the company who actually had to have me explain to her the reasons I'm on certain drugs and why I'm not on others.... Really, lady? You've never heard of metformin for PCOS? Uh... ok. You've never heard of an asthma patient whose asthma is secondary and who doesn't want inhaled corticosteroids? Asthma docs who prefer steroid sparing, especially since my asthma is ridiculously well-controlled? I think she asked me 3 times why I'm not on inhaled steroids. "I know they can cause infection complication, but..." There's your answer lady. "I figured that, but I have to ask." Yes, I am sure you do, but you don't have to ask several times.
At least she complimented me on being informed. She was also curious about my having children. WHAT IS IT WITH PEOPLE!??!!? I swear, health professionals are really curious as to whether you will be birthing babies or not. It was kind of strange, but I explained the genetic links, the fact I probably wouldn't pass it on, and the fact that I will be looking into genetic counseling before I decide about having kids. It's kind of an intense conversation to have when she's spent most of the call asking about corticosteroids.
Monday, March 26, 2012
Wednesday, March 21, 2012
Punk'd
I feel kind of bad.
The poor employees of the insurance company's wellness program that draw the short straw and have to call me really must think they're being punk'd somehow.
This one was pretty spectacular. Keep in mind I have brain fog, so I'm paraphrasing except the outrageous quotes. They're real.
"Is asthma your primary health concern?"
No. More like tertiary.
"Can you tell me what your primary concern is?"
Common Variable Immune Deficiency
"Say that three times fast..."
**sigh**
"Can you repeat that?"
Common... Variable... Immune... Deficiency
"I have never heard of that."
Yeah. It's pretty rare.
"Can you tell me more about it..."
This victim actually wins the prize because she wanted to know more about what I have and why it matters. Good for her, but man. Those first couple reactive comments were not so much fun for me. I was pretty sure I'd made the wrong choice to go forward with the program. She was very nice and tried to understand, so maybe it will be good after all.
I can't say I'm looking forward to the "nurse calls you" portion of this adventure, though.
The poor employees of the insurance company's wellness program that draw the short straw and have to call me really must think they're being punk'd somehow.
This one was pretty spectacular. Keep in mind I have brain fog, so I'm paraphrasing except the outrageous quotes. They're real.
"Is asthma your primary health concern?"
No. More like tertiary.
"Can you tell me what your primary concern is?"
Common Variable Immune Deficiency
"Say that three times fast..."
**sigh**
"Can you repeat that?"
Common... Variable... Immune... Deficiency
"I have never heard of that."
Yeah. It's pretty rare.
"Can you tell me more about it..."
This victim actually wins the prize because she wanted to know more about what I have and why it matters. Good for her, but man. Those first couple reactive comments were not so much fun for me. I was pretty sure I'd made the wrong choice to go forward with the program. She was very nice and tried to understand, so maybe it will be good after all.
I can't say I'm looking forward to the "nurse calls you" portion of this adventure, though.
Tuesday, March 20, 2012
Feeling Normal
I got a moment to speak with a friend who has breast cancer. She is through chemo, but currently undergoing radiation. I asked her what I often ask sick people... whether she gets to feel "normal" yet. She judged this to be a perceptive question, answered, and we closed our conversation... but I was still thinking...
Why is it that no one has inquired about this friend's self care? Mental health? General feeling of well-being? I mean, I know being sick is challenging, but I think we all get that. What we as a culture often fail to understand or embrace is talking to people about how they are emotionally. Do you get to feel any normalcy seems like a perfectly honest question to me, and one that perhaps we should ask more often. It gets to the heart of what a person needs to feel more calm, more sane, and, yes, more normal.
You get a lot of really honest moments with questions of normalcy. Sometimes, it even leads to tangible things you can do to help. In this case, my friend has done a great job seeking out the support she needs among other breast cancer survivors in a support group. She said that she now sees that what she feels is on SOMEONE's scale of normal, even if it doesn't register for the larger part of the population. Someone has validated her feelings, her experience, her emotions. This is so important for anyone who has a chronic illness... This is the best way to feel less alone.
Why is it that no one has inquired about this friend's self care? Mental health? General feeling of well-being? I mean, I know being sick is challenging, but I think we all get that. What we as a culture often fail to understand or embrace is talking to people about how they are emotionally. Do you get to feel any normalcy seems like a perfectly honest question to me, and one that perhaps we should ask more often. It gets to the heart of what a person needs to feel more calm, more sane, and, yes, more normal.
You get a lot of really honest moments with questions of normalcy. Sometimes, it even leads to tangible things you can do to help. In this case, my friend has done a great job seeking out the support she needs among other breast cancer survivors in a support group. She said that she now sees that what she feels is on SOMEONE's scale of normal, even if it doesn't register for the larger part of the population. Someone has validated her feelings, her experience, her emotions. This is so important for anyone who has a chronic illness... This is the best way to feel less alone.
Tuesday, March 13, 2012
Have IG, Will Travel
Personally, I can't see giving myself sub-q and turning my once-monthly 3 hours office visit into a 3 hour weekly ordeal. That being said, there's something nice about the flexibility offered by subcutaneous IG administration. No appointments, no nurses, just you.
There are lots of folks in the PIDD community who take advantage of this and even travel with their medications. This led to me investigating the TSA regulations. Our medication is not supposed to be x-rayed, but it seems that TSA regulations require that it be x-rayed if they can't visually inspect it. I suppose, along with other documentation, one should also bring the product insert that outlines this.... hmm.
For further reading:
http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1059.shtm
There are lots of folks in the PIDD community who take advantage of this and even travel with their medications. This led to me investigating the TSA regulations. Our medication is not supposed to be x-rayed, but it seems that TSA regulations require that it be x-rayed if they can't visually inspect it. I suppose, along with other documentation, one should also bring the product insert that outlines this.... hmm.
For further reading:
http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1059.shtm
Thursday, March 1, 2012
Well, Hello Kidneys...
I started feeling like utter crap over the weekend. Then my left flank started to hurt. I have treatment on Monday, so I figured I could wait it out until then....
It got worse. I had to take pain meds for my side. I called and got an appointment with my immunologist. He agreed with me that it seemed like a kidney infection, so we took labs and I started on bactrim.
Two things: I am officially not allergic to sulfa drugs, which my siblings are. I tolerate bactrim quite well.
The labs came back yesterday morning. Everything was clean. So we don't know what's going on, but I think the bactrim is making me feel better, so I think I will just keep the silver lining and not look too much under the hood to see what's going on right now. I just need a break.
It got worse. I had to take pain meds for my side. I called and got an appointment with my immunologist. He agreed with me that it seemed like a kidney infection, so we took labs and I started on bactrim.
Two things: I am officially not allergic to sulfa drugs, which my siblings are. I tolerate bactrim quite well.
The labs came back yesterday morning. Everything was clean. So we don't know what's going on, but I think the bactrim is making me feel better, so I think I will just keep the silver lining and not look too much under the hood to see what's going on right now. I just need a break.
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