manic?

No wonder I don't know what day it is. I was up until 6am last night--I mean today. My mind is just racing. I feel sort of scattered but seem to be able to focus well and even finish tasks. Unfortunately, I am focused on entirely trivial things. It would probably be better if I could focus on something relatively important that I put off for weeks while I was feeling so bad. (I think I'll count "posting on my blog" in the relatively important column.)

I think I recognize this as a pattern from previous times when I have changed the Marshall Protocol meds according to the dosing schedule. When I reduce one of them significantly, it's like I wake up from a dream.

Only now I know: this is how I will feel when I'm well. Not that I have energy, exactly, but things don't seem overwhelming. It would be amazing to be able to count on feeling this way, on having a brain, for days or weeks at a time: I might even be able to do something crazy like start practicing law again. Is that what being well would be like?

I still have some brain fog. I'm having some pretty dreadful memory lapses and I'm still dropping nouns in speech. Numbers still baffle me. I'm still tired, and not rested. (And the insomnia of this phase won't help with that.) I still have joint and muscular pain. Lots of other symptoms I won't bore you with. But I'm having moments, hours even, of mental clarity. The comparison to how I felt less than a week ago is stark.

This is real. The Marshall Protocol is the cure.

Trying to go out more

My niece's wedding last weekend was wonderful. I was so grateful to be able to go. Folks seemed to like my hat/scarf/gloves/glasses and I practiced my Royalty Wave. The wedding was a couple of hours' drive away and was outdoors at 7pm (sunset is at 8:30). I used the prescription cream on my face and took extra Benicar and the sun really wasn't as oppressive as it was during my outing earlier in the week (when I took the same precautions and was out for a shorter period)-- who knows why? I used a sunshade while in the car and after we got to the venue rested in a room with no windows. After the ceremony, I kept my paraphernalia on while near windows inside until it got dark.

I even managed to dance with the groom (to an Elvis song!) but I was too tired to join in the line dancing. My parents nearly won a dancing contest, for the couple married the longest! I had never seen them dance before as my father usually refuses to dance but to everyone's utter shock he took my mom to the floor and they were only defeated by a couple who had been married one year longer. They celebrated their 42nd wedding anniversary this week!

Since that big adventure I've been resting a lot, but I did go out the other night at dusk. I didn't use the cream/hat/gloves/scarf but I did take extra Benicar and wear the NoIR glasses. It went well but I have been really tired since.

And now, for something completely different:

I looked up the word "paraphernalia" to make sure I had spelled it correctly and learned that although its modern usage is generally personal equipment or accessories, the historical definition is "the separate real or personal property of a married woman that she can dispose of by will and sometimes according to common law during her life!" Wow, who knew? The etymology is from the Greek (via medieval Latin of course) and is "bride's property beyond her dowry, from para- + phernē dowry, from pherein to bear."

out during daylight

I actually went out this week. I went to get my hair done. My niece is getting married this weekend and so vanity required that I get it cut and colored.

The good news is, all the hormonal adjustments the MP has caused mean that my hair is healthier than it's been in years. It's thicker, smoother, stronger, and isn't falling out or breaking all the time. The bad news is, it's still coming in about half white (it started going gray when I was 27, shortly before I got sick). The good news is, my stylist got the color to exactly the color it was when I was a teenager! Happy, happy, joy, joy! Someday my natural color will be back. There was an 80 year old man on the MP whose hair had been white for decades and it suddenly started coming in dark. So there's hope.

I was out for about four hours and really found the sun oppressive. It didn't make me feel ill, but getting out of the sun was a relief. During the drive home (heading west) I put a scarf over the lower half of my face (along with hat, NoIR sunglasses, gloves, long sleeves, jeans, and boots) and the relief was palpable. When I got home I wanted nothing more than to retreat into my dark bedroom; I even shut the door which I don't usually bother to do. When I shut my eyes I saw flashing lights. Eek! Fortunately the flashing went away after twenty or thirty minutes, and I felt much better. Since then, just a little extra tired.

My niece is getting married on Saturday evening and I will probably be out during daylight for about six hours. It shouldn't be too bad as I'll be well prepared.

Happy Easter!

I was able to go sing last night at Easter Vigil mass, which was a great pleasure. I really miss singing, and after the EV mass the choir always goes out for breakfast so I was able to visit with everyone. Got lots of hugs. It's nice to be missed. And it's nice to know that I still have a B-flat!

This was my sixth outing since starting the Marshall Protocol January 23rd, the third night-time outing. I was really pleased to be able to manage my meds successfully so that going out was possible. Honestly I don't miss going out very much; I've always been inclined to be a homebody and the darkened confinement suits me well: I feel protected and safe, and have no trouble keeping myself amused. The only thing I find a bit disjointing is the passing of the seasons. My mental image of outdoors is one of mid-January, so when I go outside at night and see plants and trees blooming it's a bit startling. Sometimes when it is very quiet I can hear the bees buzzing in the azaleas outside my window and it takes me a moment to identify the sound.

I am tired today of course and am staying home to rest. My parents are going to the usual family gathering, which is at my cousin's house about an hour away. She (my cousin) came here on Good Friday and spent the day with me, a very nice visit. I like having her back close by (she lived out of state for 15 years). She made me smile and laugh so much that my cheeks hurt!

Best wishes for a happy Easter to everyone!

Tough week

This has been a hard week, but I'm moving forward with my MP preparations. I've ordered my special sunglasses and purchased blackout liner to make curtains. I've got hats, gloves, and scarves. Still a few things yet to check off the list, but I'm making progress slowly but surely.

The hardest part of the last couple of weeks has been weaning off of some of the meds I've been taking. One in particular is hard to live without. Some old symptoms are coming back that it used to control; the biggest one is that I am hungry all the time. I get no satisfaction or pleasure from eating, and never feel full, even though I'm eating two or three times as much as I was a couple of weeks ago! (I am afraid to get on the scale.) It's mostly blood sugar and it's no fun, but I know that the MP will fix it in time-- not just mask the symptoms. So I guess it's a reminder of why I'm about to start the MP.

I have been very tired. Lots of brain fog, general malaise, some grumpiness. Also low grade fever, some edema (from weaning off the above-mentioned drug), some joint and muscle pain. I'm weaning off coffee, too, but have had fewer symptoms from that than I expected, at least compared to all the other symptoms. I had some bad headaches this week but that was before restricting caffeine and between pain meds and heating pads, they went away. I think it was just tension.

I am ready to start the MP. Just got to get those last few things done first.

New Year's Eve

I'm hanging in here today.

Symptoms: headache, joint pain, muscle pain, brain fog. Took pain pill.

I am working on MP-related stuff today, lots of reading. Also measuring for curtains, trying to brainstorm about possible lighting solutions for the kitchen, dining, and living rooms.

Yesterday I brought home and installed a new plasma HDTV. Our old TV had a label on the back that read: "Manufactured in March 1985." It involved some furniture moving, some of which isn't really done yet. I turned it on and ran the intial programming setup and it found some HDTV channels that I didn't even know we had-- I think it's just the broadcast network HD version and a couple of other channels like TNT and ESPN, but there are one or two that don't seem to correlate to anything else, and one of them, called "HD Theater" was absolutely astonishing to watch. I think it will be a while before the "new toy"ness wears off of the new TV.

Catching up

I've let this blog sit and collect dust this fall, but I haven't forgotten it. It's just been a difficult few months; I've had several singing commitments that required significant rehearsal times, and then my dad was in the hospital for a month (3 weeks, 1 week home, 1 more week in) starting the day before Thanksgiving. He's much better now and I won't give a detailed report here, partly because it was very complicated, but he's turned the corner.

My job while he was in the hospital (and my mom was there 16 hours/day in Beaumont and 24/7 the two weeks he was in Houston) was to keep up with the house and bills and take care of myself and our pets (and go to rehearsals and performances). I didn't do any of them very well but I got through them all. Here is a ten-day sample of what happened in our house this month:

• Dec 14th & 15th: Dad's been home two days, very weak. Home health (they came every day). Two very long rehearsals for me for Messiah. My 17-year-old cat had a seizure.
  
• Sunday, 16th: Sing at church in the morning, Messiah performance in the afternoon. Dad's siblings drove over from Houston.
  
• Monday, 17th: Put my cat to sleep and buried her in the back yard. I'd had her 15 years, since my first semester in law school. Cleaning ladies came to clean the house. I went shopping (not for Christmas, for my mom).
  
• Tuesday, 18th: Dad still feeling so bad he goes to the cardiologist and they admit him to St. E.
  
• Wednesday, 19th: Dad in St. E. I had a long church choir rehearsal in the evening for our Christmas concert. My mom, who usually goes to bed at 8pm, went Christmas shopping and didn't get home until 10:30p.m.
  
• Thursday, 20th: Dad in St. E. He got a pacemaker in the afternoon, anticipated but very suddenly scheduled. My church choir concert in the evening. I had a big solo so I couldn't really skip any of this. My dad made my mom leave him and come to my concert! (He was feeling better already.)
  
• Friday, 21st: Dad in St. E. Mom and I both got to go to Christmas parties in the evening.
  
• Saturday, 22nd: Dad in St. E. My brother arrived for the holidays. My mom went to Walmart AGAIN.
  
• Sunday, 23nd: I sang at church in the morning. Dad came home from the hospital.
  

Next post: Gearing up for the MP.