Isy’s guidelines for taking care of relationships when it’s imp-possible to have them

Relationships can be so fraught! Add to that a disease nobody understands without years of serious effort; unbelievable pain; weird deficits (sound volume? Vibration? Time in the shower? Crowds and excitement? How weird is it that that stuff can make us so much sicker, eh?); forgetfulness; loss of perceptions that tell … Continue reading

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Cleaning up the question of antibacterial soap

This is from one of my Isypedia-type replies to someone with a dreadful case of clostridium difficile (commonly known as c.diff) who had been told to use antibacterial soap to wash. NB: This is not an opportunity to argue about antibacterial soap, but a sharing of experience from someone who was … Continue reading

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Talking about CRPS with boundaries, perspective, and joy

I’m going through one of those periods where I’m just tired of my body hurting. This is one of those offhand remarks that makes fellow painiacs nod understandingly, offer a kind look or emoji, and move on, but it makes normal (-ish) people with good social skills cringe and stops … Continue reading

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Doctor appointment optimization

Here’s my Doctor Appointment Optimization strategy. This is especially important for new diagnoses, new doctors, and any significant change or comcern you have. – Between now and your appointment, keep a pad handy and note down anything you want to find out when you see the doc. – A day … Continue reading

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My gut has a mind of its own

I take good care of my brain. I work hard at learning more all the time about how to support and foster it in spite of this tedious collage of illnesses. Neurology interests me — always has. Now that it’s so personal an issue, it’s positively compelling. Neurology’s very complex, … Continue reading

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Battle for the Brain

It’s been a crazy winter, even for New England. Those of you with pain syndromes know what that means: changeful weather means unstable pain neurology which means more pain and less brain. I’m so much more stable here in other ways that I found it frustrating to be soooooo daffy. … Continue reading

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Fixing the brakes

Interesting week here. A dear friend is embroiled in one of those ghastly legal tangles where the vultures are rigged to win. I’m the key defense witness. This comes up later. This whole winter, I’ve been basking — simply basking! — in the sheer delight of being safe, sheltered, warm, … Continue reading

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Make room for joy, especially when it isn’t easy

I’m an old ER nurse so please, trust me when I say that nobody gets a guarantee with this life. Nobody really knows what’s next, and indeed, everything CAN change in an instant. Even for the healthiest. (This is why the legislation torturing the elderly and disabled makes me livid. … Continue reading

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My preparation and self-care for surgeries and injuries

I have loads of advice for surgery and invasive procedures, so I might as well park it in one place. I used to be an RN and I’ve had this monster for over 15 years so I’ll share the key things I know, and others can add more about what … Continue reading

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