MIA blogger returns

I have been MIA, and am now woefully late in making an update...

This hospital stay seemed to last absolutely forever! I was in for nearly a month, had two surgeries and a number of setbacks. Writing an entry about it seems difficult, I don't know where to begin! But I shall ramble and see where we end up. :)

Perhaps the best place to start is the present - I am home. I flew home the day after I was discharged, which one might say was pushing the envelope, but it has worked out okay.
My list of meds has grown unruly, as is almost always the case after a hospital stay of any length. I have more pills than I know what to do with! Being on steroids (just decadron) really doesn't agree with me, but we're having to taper the dose very slowly since, lucky me, I once again picked up "chemical" meningitis- That is, meningitis caused by an irritant, possibly blood or even my shunt tubing. My CSF eosinophil count has been high, which neurosurgeon says he sees infrequently, but steroids have been the most effective treatment for others with the same problem. (eosinophils are a type of white blood cell, CSF= spinal fluid) The steroids do seem to be holding things down for me, the trick now is to ease off them so as not to shock my system right back to square one.

Pain management continues to be an issue, but things are not as bad as they could be. Prophylactic pain control measures are sooooo very important with chronic pain! Patients who live with pain 24/7 have their own unique set of problems, yet many doctors remain ignorant. Tolerance to medications, pain "patterns"... It can all be pretty complex.

I've got to get in and have someone look at my eyes, to see how the optic nerves are doing these days. My vision has remained a little screwy, thus I am actually apprehensive about that. The nerve swelling does recover gradually, so I need to exercise patience, but it is still a little harrowing. Just to see, and see normally- Ah, how ignorant we are of bliss until it's passed us by!

The myoclonic jerks seem to vary in severity now.. They were surprised to find that my EEG showed no epileptiform activity. A big relief that it's not epilepsy, but the jerks and twitches can be quite a problem nonetheless. My legs are impacted most, but the worst for me is my jaw. I've got TMJ problems as it is, so having those muscles move without my consent is insult to injury a lot of the time.

Ah, ramble ramble ramble. It's good to be home. It's time for bed!


Blogger Dreaming again said...

Ramble on!

I really wish it was easier on you.

I had meningitis from a treatment before ... they called it 'aseptic meningitis' (meaning, it came from no infection). I got a monthly treatment for 7 years, out of those 7 years, I got the meningitis 23 times. My doctor occassionally brings up starting the treatments again ... uh ...NO.

Reading your battle brings up interesting questions for me, concerning my son. Is it better to take care of it earlier, than later? How common are the complications like you've had?

(not asking for answers here, just thinking outloud)

anyway, I'm going to have to do tons of research before Bj's next neuro appt in June.

I didn't realize that seizures could be a part of this ...hmmmmmm

anyway ... welcome home!!! SSOOOOOOOo glad to have you home!!!
And ramble on!

2:19 PM  
Anonymous Anonymous said...

glad you are finally home, and what peace you must feel in your own bed. you are amazing! i wish for you a strong recovery.

11:57 PM  

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