Aside: What Passes for Humour Round Here

Please note this is an aside that has nothing directly to do with CLIPPERS even though it relates to a CLIPPERS-monitoring visit to the NHNN. Normal CLIPPERS-related service will be resumed as soon as possible.

Funny?

 

(while filling in form)

NURSE:  "Do you have any pets?"

BILL:      "Are you making this up?"

NURSE:  "No" (shows me the question on the form)

BILL:      "Next you'll be wanting to know what colour underwear I've got on!"

NURSE:  "Mr Crum, if I wanted to know that I would take you next door and ask you to change your trousers."

Serves me right for trying to be a smart-ass!

Not Funny! (and Not Advised!!)

Sending the following to my wife at the end of my Day-Care appointment.

They drilled a couple of holes for a look-see.

(The bandage was actually from my arm where the MRI contrast was injected and even though the train wasn't too busy, yes, I probably did get some funny looks.)

 

Read other articles in this series at Living With CLIPPERS.

Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

International Rescue

George

Genetic and Rare Diseases Information Center (GARD)

Well this blog has passed the quality checks for resources linked to by GARD and is now listed here (under the Organizations tab). This might explain the slightly increased traffic I've seen here recently although Mark Zuckerberg still has nothing to lose sleep over. Still, if there is anyone out there with a probable/presumptive/possible CLIPPERS diagnosis who wants to share a bit of their story (anonymously if you like)  let me know (see the FAQ) and I'll start a summary page.

Prodding and Poking

Another couple of days of prodding and poking booked in for next week at the NHNN. As far as I know this is comfy chair,  "Brain MRI" and "Case Review", and no-doubt a bit of walking in a straight line and tracking various things being waved in front of my eyes. Also no doubt a medication review which could be important as on the current schedule I'll be off cortico-steroids completely in 6 weeks.

Read other articles in this series at Living With CLIPPERS.

Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Slightly Cleaner Than Before

Keeping My Chin Up

Insured At Last  

Well I finally got some travel insurance via All Clear Options but it took a while for their back-office doctors to decide what to do with me. So for the purposes of insurance I now have Primary Cerebral Vasculitis. I spent about a week being investigated for various kinds of vasculitis last year so I guess it makes sense and Wikipedia says it can be confused with Multiple Sclerosis which I was also investigated for. They would only insure me for a single trip and the cost is about 10% of the holiday (well the holiday wasn't that expensive in the first place) which made me do a double-take. A friend who had some more recent completely different (but well known) health problems was quoted about two and a half times the amount I was for a trip which was much further and for longer so I guess it was proportionate. The good thing is I am able to insure my wife as a "Travelling Companion" which sounds a bit Victorian but means she can claim for problems caused by my CLIPPERS too (like cancellation costs etc). Anyway, that's enough about insurance.

Sex and Drugs and Rock'n'Roll (But Mostly Drugs)

Prednisolone is lower than it's been since I started taking it. I'm now well into single figures and moving to 8mg / day tomorrow. Now we find out if the Azathioprine is doing it's job and taking up the slack. If nothing else it's certainly making me paranoid about all the people who's one aim in life seems to be to cough all over me at the moment.

Read other articles in this series at Living With CLIPPERS.


Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Bits and Bobs

A quick update about a few things.

In the absence of an Easter Bunny this will have to do.

Drugs

Down to 10mg Prednisolone and stable at 100mg (twice-daily) Azathioprine.
This is now the lowest dose of Pred I've been on since being ill.

Feeling alright so far.

Interweb

I came across the NIH Office of Rare Diseases Research the other day and the related site the Genetic and Rare Diseases Information Centre. The latter has an entry for CLIPPERS but the resources available are all generic and not CLIPPERS-specific. I submitted this blog as a suggested resource they could use. They've replied to say they will check to see if it meets their "new criteria" for personal blogs and add it to their web-page if appropriate. I guess they want to make sure I'm not selling snake-oil. I also came across RareShare which is "a unique social hub building communities for patients, families, and healthcare professionals affected by rare disorders".  I've signed up and submitted CLIPPERS as a new community (as inevitably it wasn't on their database) but it hasn't appeared to date. 

Insurance Quest
Some more delays with getting travel insurance quote. I rang All Clear Options again last week and they were very apologetic about the delays and said they should have an opinion about how to label CLIPPERS (for insurance) this week. That hasn't happened so I will be back on the phone after Easter!

Happy Holidays!

Read other articles in this series at Living With CLIPPERS.

Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.