Category: Support

Follow Up

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Well, obviously, since I haven’t posted in awhile, that either means I’m really ill and can’t do it, or I’m feeling pretty darn good and don’t have much to report. I’m happy to say, it’s the latter. Until now.

I have finally started to make some arrangements for my 2-year follow-up. Since Dr. Kwan has left the area, and I’ve only heard rumors about a recent hiring in MA, I contacted his old office and was told he had referred me to Dr. D’Angelo, the neurosurgeon who attended to me first at Maine Medical in Portland. In fact, I saw Dr. D’Angelo more than I did Dr. Kwan…he was also the one who gave me my “walking papers” when I was finally released. He sure made me smile THAT day!

Anyway, I have just an appointment to see Dr. D’Angelo in Scarborough, Maine on Sept. 8th where he will then determine the next course of action. Either an MRI or an angiogram and then to determine WHERE all this will be done. I’m hoping it can all be done here in Maine, but we’ll see.

Neurosurgery and Spine Associates

Of course the last couple of weeks I’ve been having headaches, but I think it’s more due to starting to work harder on the catalog and the natural stress that puts on my brain. It’s hard work to think! LOL I find my eyes are very tired at the end of the day…but I have to drive that 30 miles home, so no resting until then. I need to make myself get up from my desk and rest my eyes and brain for 15 minutes in the morning and afternoon. I remember I did that a lot last year….I guess I still need to do it.

I’m already nervous about ANY testing being done, but it probably won’t come for a couple of months yet. I’m glad I’m going to meet with Dr. D’Angelo though. He’s highly regarded in the area and I have great trust in him. He was brutally honest to me in the hospital, and I appreciated that. He didn’t sugar coat the seriousness of my situation and how he really didn’t want to operate on that area of the brain and was very hopeful that Dr. Kwan would come in and do the coiling….I am too.

Things are moving ahead, so I’m glad something has been taken care of. I’m still not happy about no interventional radiologist in Maine though.

Pity

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Dave and I went to see the musical “Jesus Christ Superstar” at the Waterville Opera House. It was a fantastic production. I’ve never seen this musical. Have heard of it, heard a lot of the music, but haven’t seen it live before which is always good because I’m not comparing it to any show I’ve been in or have previously seen. Something I tend to do quite often! So, this was a “fresh” show for me even though it has been around for over 30 years. LOL

For those of you who don’t know, I’ve done community theater for over 20 years now. 15 years back in NY and I’ve done four shows since I moved to Maine. Two of which were in the Opera House. I was amazed at the set and the number of people in this show. The wings (back stage on the side) of this stage are very limited for space. It also looked to be a full-house tonight which is terrific to see.

Since my aneurysm, I’ve been asked by a few people if I have been in any other shows or plan to be. Truthfully, I just don’t know if I can anymore. I was thinking as I watched the show how much work, time and energy goes into each show. Even with the smallest roles, the weeks before and during performances are very stressful and require a lot of patience and professionalism by all involved. I can probably still handle the patience and professionalism involved, it’s the stress and energy that concerns me. I tired so easily still and I’m wondering if I’d be able to memorize and remember lines like I used to. I’d hate to make the commitment to a show only to totally screw it up.

Yes, if the show were the ONLY thing I was doing, I think I could do it, but since we’re not paid actors in community theater, we’re basically “volunteering” to act and do this in our “down time” AFTER work. It’s the 30 mile drive to work, then working 8 or more hours, then rehearsing, then driving back home the 30 miles that is making me think I may not be able to do shows anymore. At least in the Waterville area. And that, my friends, depressed me a great deal.

I enjoy theater so much. I enjoy becoming other fun and interesting people and I enjoy making people laugh. Far more than I do making them cry. Comedy has always been my choice. Make them laugh and feel good. The hell with drama and pain and crime. God knows we all have enough of that in our lives…why pay money to go see more?

When I got home tonight, I shared with Dave my thought on how I was concerned I wouldn’t be able to do a show again. Then I ended up sitting in my chair watching TV for an hour feeling sorry for myself. Poor me….what a pity the poor old girl doesn’t think she can act anymore. Boo, hoo. Well, it is sad. Granted, I can’t play the good soprano musical comedy roles, nor am I the nubile nymph I once was when I played Audrey in “Little Shop Of Horrors” or Lily St. Regis in “Annie”, but if the role of Miss Hannigan from “Annie” ever came up in this area, I’d be chomping at the bit to play it…and knowing I might not be able to, is very sad.

I still have limitations and I know that, but I should be grateful I can still attend plays and enjoy them and enjoy the work that others put into the craft. Instead….I’ll probably just feel sorry for myself awhile longer.

The Walk For Thought 2008

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We got home around 11:30 on this sunny, but very chilly and very windy day. Needless to say, the walk wasn’t held outside, but inside the massive gym/track facility at Colby College in Waterville.

This event was one of six locations where walks were being held today to benefit programs for the Brain Injury Association of Maine.

There were donuts, fruit, coffee cake, yogurt bars and other assorted goodies waiting for us when we arrived and checked in. I raised over $1,000 so I received a sweatshirt. I was only there wearing one, so I guess I did good! LOL Dave got a t-shirt and we wore them proudly. I raised a total of $1,260.

After some opening announcements and some stretching, we started the trek around the gym with the other 100 or so people who signed up today. A good turn out apparently, compared to years past. And they had a nice brass quartet playing very upbeat tunes during the walk. It sure helped pass the time and they sounded great.

I had to pace myself and keep a steady even pace and no over do it, which I succeeded in doing pretty well. Dave walked with me except for a few times were I let him go and have fun and walk faster. The track is a 1/4 lap within the outside ring of the track. I tried to stay in that lane, but with all the young kids wanting to run instead of walk and other folks, it was tough to stay there. They had a table set up with water and fruit so I did stop at one point for a break and grabbed some water.

In total, I ended up walking 16 laps I think for appox. 4 miles. I’m pretty pleased with that. My inner thigh started to bother me the last few laps, ironically, right where my coils were inserted, and I didn’t want to push it any further. I was limping across the finish line, but happy I did it. Then they served us a nice lunch and we said our goodbyes.

There were a couple of people there in wheelchairs and one with a cane and I thought the one man who got out of his wheelchair and made several laps with a walker did  fantastic job. He had quite the support crew with him as well. From the looks of the banner, some folks were there in memory of a loved one too. I wrote that I was walking for Heidi & Jennifer. I wore the ABTA.org bracelet.

People walked much faster than me and lapped me several times, but I didn’t care. I was lucky to be able to walk the amount I did. I’m VERY tired. My head hurts a little bit, but it’s nothing compared to what so many others are going through. I’m reminded of how short life is and one should enjoy it.

Struggling

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I am hoping that other survivors will read this post and understand what I’m going through…no one else seems to know.

Last Friday I learned that Dr. Kwan, the man whose handy-work is in my brain, whose hands God guided to very likely save my life, who is the only Dr. who does what he does in the state of Maine….no longer practices medicine. I haven’t officially been informed, but a fellow patient of Dr. Kwan’s heard it from his office.

This is very scary and concerning. If something were to happen to my coiling…I’d have to go to Boston probably. Not that I don’t think they’re qualified, but it wouldn’t be the man I trusted and looked to to help me and guide me. He’s one of my “support team” as my therapist says. Also, since I don’t know WHY he isn’t practicing medicine, I’m a little concerned about the work he did on my brain! How could I not be?

Well, he’s the third of my “support team” to leave me in the last 3/4 of a year. My OBGYN and my neurologist left the state. So now, not only do I have to find two new people to trust, but probably one of the most important people, is gone. I’m very scared.

Add to all of that… I learn on Tuesday that my job is being changed at work.

So, is it any wonder I’m stressed? Is it any wonder I’m so freaking scared about my future, not only at work, but for my health? And now I can’t even get a note from my Dr. who did the coiling to say I need to take some breaks at work. Lovely.

I’m hoping someone out there will understand. My therapist is on vacation and others just don’t seem to get it. I’m really, really, struggling with all of this and there are no easy answers.