Planning…I’m not doing much of it right now. I don’t feel I can safely plan a trip anywhere. I have a thought about some place I’d like to go, but then it’s quickly dismissed due to not knowing how traveling will effect me.

Dave and I love Disney. We have made two trips there and I’m pretty sure we’d both love to go again. I know I couldn’t do the trip right now. But what about a year from now? Could I even safely begin to plan something like that? No. I don’t think so. And even if we did plan a trip a year or so down the road, how do I know that once we get there, I couldn’t stand in line that long. Can I ride my favorite rides? Can I sit in an enclosed space with hundred of other people? Can I even get on a plane? Right now…..I’d say “no”….and that’s sad.

We’d love to go to Scotland and right now that size of a trip is so daunting, I’d say it’ll never happen….and that’s sad.

Even a trip back to NY to visit my family is a daunting prospect. Could I handle the 11 hour drive in car? Right now….I’d have to say “no”. And even if I could endure the ride, I’d probably be so totally exhausted by the time we got there, I’d be a useless visitor and have to sit and rest so much it wouldn’t be fun for me, or my family. And that’s sad.

Dave and I haven’t even gone out to a restaurant to eat. Mostly due to my not knowing if I could do it and not feel horrible. I’d hate to make a reservation, only to get there, have the lights in the restaurant, or the colors, or the people and sounds bother my head and eyes that we’d have to leave. I don’t want to ruin my own time, as well as someone else’s. I feel like I’m not only holding myself back from enjoying life again,
but that I’m holding Dave back and I hate that.

I kind of know what my mother went through as she was trying to adjust to life with Crohn’s disease. She wouldn’t go out or travel because she never knew when an attack would strike and didn’t want to embarrass herself and ruin other people’s time. I completely understand that now. BUT, she was able to get her diet and health regulated so she can go out now and is enjoying her life at 80. I suppose I should take a cue from her and just learn to live my life again.

Starting with a long day-trip somewhere, then work our way up to an over-nighter and then maybe an out-of-state trip, might be the way to go, but I won’t know until I try it. Driving to work was a big step and it took me awhile to work my way up to where I felt confident I could do it.

I know I won’t know until I start DOING these things, but it’s scary when you DO know you can’t do some of those things and plan for them and may not be able to for a long time yet.

That’s my sob story for today. Boo, hoo.

Big Step!

After weeks of talking about it, today I finally did it and drove myself to work and back. 60 miles round trip.

I got up at my “normal” time (well, a little later) and left the house at my normal time to get to work at my normal time. Things were….well….normal! LOL

It really felt good. I was a little nervous leaving the driveway, but as soon as I hit the road, it felt very routine. My car could probably drive that route by itself anyway. It was 5 below zero out, but the roads were clear & dry.

I made myself stay very alert and got stuck behind the school bus traffic, so the other cars weren’t going any faster than me, so that was good.

Once I reached the interstate it felt as if nothing had changed. I even swore at an idiot who was driving like on. Just like old times.

My reality check was when I exited and almost rear-ended a pick-up truck. It was then I realized I had let my guard down on the interstate…I cannot do that just yet. I can’t rely on my brain to trigger those reflexes instinctively just yet. I have to stay aware – all the time when behind the wheel. Which can tire me out as well.

By the time I got to the parking lot at work, my eyes were aching and my head was a little sore, but really not too bad. Very doable. I was pleased to have made it.

I worked for four hours and left at noon. I didn’t want to push it in case I would have trouble on the drive home.My head and eyes were bothering me just a little bit. Of course I picked the coldest day of the winter to go out, but again, once I hit the road, I felt fine.

The drive home was uneventful and I stayed far more alert. There was also less traffic at that hour than first thing in the morning.

When I got home, I was very, very tired. More like I haven’t slept in two days. That kind of hazy,mrunning-on-fumes sleepiness. I ate some lunch, called my mother to tell her the good news, then promptly fell asleep on the couch while “resting” my eyes.

Overall, I’m really pleased with myself and the fact I wasn’t overwhelmed and in horrible pain when I got home. I hope to try this three days next week and build up from there. Guess I better start getting some exercise.

This was a big step for me and one I needed to do. I may feel like crap tomorrow, but at least I know I can do it…aneurysm be damned!


Well, today I discovered what my neuroradiologist meant when he said “antibiotic prophylactic” at the tail end of my follow-up check up in November in response to my asking a question about a dentist appointment. Unfortunately, he didn’t tell me I needed a prescription for it, what type of antibiotic I needed and that I needed to take it one hour before even a cleaning at my dentist.

I found this out this morning when I just mentioned antibiotic prophylactic before my cleaning. Red flags were thrown, they tried to call the Dr’s office and couldn’t get through and I had to turn around and come home and will call the Dr’s office
this afternoon to try and get an answer.

I am kicking myself for not asking sooner, but I really didn’t know what it was, nor how, or whom to ask. Thankfully, the dental technician was very helpful. My Neuroradiologist….was not.

I reschedule my dental appointment for the 2nd time and will try it again in a couple of weeks. I may have to take them forever before any kind of a dental procedure that might trigger bleeding. Or maybe only for a year or so. I don’t know. It’s to ward off any kind of risk for bacteria getting into my blood stream, which makes sense….NOW! LOL It’s quite common for people who have had specific types of surgery

Phantom Migraine

I had another phantom migraine today. Not that I’m complaining it WASN’T a migraine, I just wish I knew what is WAS. My eyes started to do strange things again, like they do when I get a migraine, so rather risk it by not taking the pills, I gobbled
up two Excedrin migraines and rested for a bit.

No pain developed, which is great, but a little frustrating. What’s causing the eyes to do that? I have cut way back on my caffeine consumption having only one or MAYBE two cups of caffeine tea a day, then doing decaf the rest of the day. I’m not eating peanuts, nor peanut butter. I’m not drinking, not eating horrid amounts of chocolate….just not sure. I haven’t been able to pin point a common-denominator between each time this has happened, but I guess I better start paying attention more.