April 2012, NO PLASMAPHERESIS

Insurance won’t pay for it; they say it’s experimental (actually they said no to IVIG, which I had in the hospital previously! Doc said it wouldn’t be any different if she asked for plasmapheresis; don’t understand that. Maybe because they’re both experiemental. Of course, everything is with HE! We need to find a treatment! What now? No more oral steroids!!!

February 22, 2012, PLASMAPHERESIS TO COME

I’m weaning off these darn steroids before my 8 weeks are up. My stomach aches, my weight gain, the knowledge that these pills are eating away my bones and muscles, the headaches when I try not to drink coffee I’m supposed to avoid….there has to be something else. So Doc K says we should try plasmapheresis—remove the plasma, clean it of antibodies, put it back. Don’t know how often this would have to be done, but the side effects aren’t as bad. Still, that means another hospital stay; she’ll make the arrangements.

January 29, 2012, STERIOD SIDE EFFECTS

This is my fifth week on oral steroids…prednisone. My doctor thinks it is worth trying to see if it keeps me regulated…my numbers, that is. So, I’m exercising at the gym 6 days a week; I’m eating less, drinking more water, taking stomach acid pills, and extra calcium daily. And I’m putting on weight. There’s nothing that counteracts the fat-building effects of the steroids, and I know it. This knowledge, however, isn’t enough to keep me from getting more and more upset. The weight may be superficial, but to me, it’s still more aggravating and frustrating than just about anything I’ve had to face so far. Still, I feel better physically. But I know there’s a point coming when that won’t matter to me at all; I’m used to feeling lousy. I hate my clothes not fitting. I haven’t been so heavy since I was pregnant. I don’t think I’ll last the full two months on these pills.

May 16, 2012, HOME AGAIN WITH ‘DR. PAUL’

Today is day 2 of my second bout with home IV steroids--Methylprednisolone (Solu-Medrol) 1 gm in 100 ml this time--from Home Solutions, 1 hr. every 24 hrs. for 3 days. It was arranged by Dr. K. at my April appointment because of the insurance rejection and due to the fact that it seems some of my symptoms are reoccurring. Nothing new, just the same double vision, depression, poor balance again. The sad thing is Dr. K is leaving next month, moving to NY. She’s leaving me with Dr. Carol Lippa who I’ll see in August 2012. (She is a very well known specialist, 30 years in neurology, written some books, quite a reputation in her field. She was the doc that led me thru the Grand Forum at the hospital in 9/2012; so we’ve met.) Still I will miss Dr. K. despite her comparative lack of experience, she did diagnose my case. Hopefully I’ll get something more from Lippa.

LOVE THOSE BRIGHT SPOTS...6/9/12!

The brightest day of the year! I saw Il Divo again, this time at the Mann Center in Philly. Paul went, begrudgingly; he didn't want to me drive alone. There haven't been better voices since TJ!

July 7 2012, SOLUTIONS NOT AVAILABLE                      

This has been a strange few weeks. My father-in-law passed away and a dear friend is about to follow him. All are sad, family and friends. Our minds don’t seem to grasp it all, and then when they appear to, tears follow….it’s a pattern, again and again. There is no solution to death or to dealing with it.

The world on the other hand is still fighting. Now it’s healthcare. Obama, who is trying to solve the problem is getting all kinds of grief; it’s another tax, after all, so few are happy. The idea is to give everyone health insurance by everyone paying. But again, none have a better idea. There seems to be no solution.

On the micro scale, I will have foot surgery this week for joint replacement and be on crutches for a month or more. Our van broke down and now we have only one old car. My disability still has not been approved, and both our health insurance and unemployment benefits will expire at year’s end. Is there a solution here?

It’s scary…for lots of people these days, for lots of reasons. I think it will always be. The world is changing, as it should, I guess. But why in ways that desperately cry for solutions?

I have what??

Hashimoto's Encephalopathy. Sounds a bit like a rather odd Japanese dish instead of a rare medical condition...a dish I would never volunteer to taste, mind you. But it seems I don't have to volunteer anything: I have it, free of charge.

Seems the antibodies that impair my thyroid's function got bored with simply messing around with that lowly organ and moved onward and upward to start playing with the neurons in my head. Obviously, my complaints were really all in my head, ...quite literally in my head.

So I'll spend 2 weeks in Hahnemann where they'll zap me with steriods and eventually dislocate those litttle buggers. We'll see; it sounds too simple. I mean, I'll get my head back, all to myself, unaffected by the gnats that have been making me miserable, unhappy, confused, with short-term memory loss, tremours, depression, the list goes on. I wonder how long I've been sabotaged; was it through one job lay off, or two?

New lights

Life begins again! New people, new outlets, new magic, new challenges. If it's part of the past, there's no room for it in the future...It's invigorating!

2010

Welcome! May it be a happier place to live this year, for all of us.