I just wanted to let everyone know that Dr. Gray answered my email.
“Hi Wendy,
I will work with Horace to find a sooner slot..thanks for letting me know!
hang in there
Linda”
(FYI -Horace is her scheduling secretary)
Today, the hearing in both of my ears is way down. It’s so confusing. The roaring is not too bad, and I just have a slight headache. Am still trying to stay horizontal as much as possible. It does seem to help, but being flat on my back all the time is really no fun.
More soon.
Thank you all for your wonderful support.
I really don’t know what I’d do without the support of my friends on here! Your belief in me, and my strength, is a major part that keeps me going.
I keep thinking of posting, I have composed many wonderful posts in my head as I lie in bed waiting for sleep will come….but of course, I can’t remember any of it once I wake up.
I don’t know what’s wrong with the spacing on this post. I’m sorry it doesn’t have breaks for a lot of it. I put them in, but they didn’t show up.
**Fair warning** This post is a lot of stream of consciousness talking. Things that are on my mind. You are welcome to read part of it, or non of it, or all of it….what ever strikes your fancy. Just beware…I may ramble a bit.
My symptoms lately have been very strange. Perplexing, is a good word.
photo courtesy of scienceblogs.com (Migraines)
I’m very lucky, I am NOT having vertigo! But here’s what’s going on:
daily migraines – on a scale from 3 – 9 (one day was a 10 for about 10 – 15 mins, Stuart was ready to take me to the ER…but it subsided)
tinnitus going crazy – at times my tinnitus is so loud I swear a jet engine is taking off in my skull. Usually, it last a couple of hours, slowly returning to my normal hum. But days like yesterday….well, the EXTREMELY LOUD ROARING lasted for about 8 hours! For a few days every night it would start around 10:30 pm and last until about 3 or 4am…then I could finally sleep.
my hearing was better during the loud tinnitus – yeah, WTF? I put in my hearing aids and I could hear all the dings that sound when you first put them on – in BOTH ears. This only lasted a few hours. This is the second time this has happened. I’m glad because it shows me my hearing can improve in that ear, but it’s a bit much when it happens in conjunction with the roaring. It’s also very confusing.
fatigue – are you surprised by this one?
disequilibrium – No I’m not having vertigo, but I get so off-balance some times. I’m also getting that “woosh” feeling when I move my head too fast.
I keep feeling like I’m on the verge of an attack, but it doesn’t come.
Dr. Gray sent me an email that said she wanted to “test my pressure now!” But her scheduling secretary said the soonest I can get in is August 30th. He emailed me this, I emailed back and asked to be put on the cancellation list, telling him I only live a few minutes from Duke so it wouldn’t be a problem to get there in a hurry. He didn’t respond, just set up the August 30th, appointment.
I’m not sure Dr. Gray is aware of how long it’s going to be before I can get in there, I think I’ll drop her a line today. I hate to bother her, I know she’s a very busy lady…but I’m suffering here, and she did say she wanted to get this done “now!”.
Accomplishments: Despite my symptoms, I have been able to do a few things. (Yes, mostly stay flat on my back, because it seems the symptoms are less the more I stay horizontal.)
On Friday, I had a massage. Bliss. I was having a very bad day with the disequilibrium that day, but made it through. My massage therapist is a wonder, and very understanding about my conditions.
On Sunday, I went to the grocery story with Stuart, a whole hour and a half out of the house! I felt like crap, but it was nice to get out!
On Tuesday, I went to a Home Owners Association meeting. That didn’t go very well. I was glad I could go, but had to rush home afterward. The tinnitus got so loud while I was there I couldn’t tell the people were actually talking. (I could see their mouths opening, but could not hear the words. All I could hear was the rumbling.) Still glad I went.
On Wednesday, it was a very LOUD day, as I mentioned before. So most of the day was spent on the couch or in bed. But last night right before I went to bed, I felt better. So I cut up a bunch of tomatoes from our garden, and some shallots, also from our garden, with some garlic and had them in the crock pot (the pot part of it) in the refrigerator ready to turn on today to make spaghetti sauce. I’m using fresh herbs out of my garden, so I’m not adding those until it’s almost finished. (unfortunately, neither Stuart nor I got up at a reasonable time today, so we’ll be having spaghetti tomorrow.) Haven’t tried to have spaghetti since my Dietary Fructose Intolerance diagnosis, hope it goes well, I really miss it.
Today. Again, I’m mainly flat on my back, but I’m also doing laundry. So a bit of getting up and down, but it feels good to do it.
The Artist’s Way workshop…well, that isn’t going so well now. The farther I get into this book, the more I don’t agree with some of the things she suggest. Last week was supposed to be reading deprivation. That’s right. No reading for a whole week. Also no TV, or anything like that. Ummm, no reading? Well, that just isn’t going to happen with me. I love to read, and get a lot of inspiration from it. I just don’t get that one.
This book says you don’t need to be religious to follow the workshop. But it continually talks about God, and how your creativity comes from Him, and by opening yourself up to his gift you will find your inner muse. I don’t want to get into a talk about religion here. But, I’m not that religious. I’m not an atheist, but I’m not someone who believes I should turn everything over to God and it will work out. I think he would expect me to do things for myself. To work hard…. I could probably get in a whole big theological discussion here. But I’m not trying to. I can see where some people will be able to get a lot from this book. But I just don’t think it’s for me. I do enjoy the “morning pages”, and the Artist’s Dates. I will try to keep those up. I haven’t completely dropped the workshop…but I’m not as enthusiastic about it as I was when I started.
photo from weblo.com (I just thought this picture was really cool!)
I wish I knew of a different Creativity Workshop that wasn’t centered around God. I’ve searched and found some possibilities, but I don’t want to dish out the money on books that I don’t know enough about. I did find a couple at the library that I have ordered. We’ll see how that goes.
I guess I will have to change my that goal on my 101 things to do in 1001 days. Perhaps, instead of saying, complete the Artist’s Way Workshop, I will simply say, to complete a creativity workshop?
I think I’ll easily pass my goal of reading 100 books this year. (I made that goal on Jan. 1st). I’ve read about 15 in the past month. Funny, how much you can read when you can’t do much else. I’m proud to say that I haven’t just been reading popular fiction. I’ve been reading art books, self-help books, classics and I’ve even been reading a book about the history of the Free Masons. (that’s a really strange read) I’m slowly reading Uncle Tom’s Cabin, but it is quite a good book! I like to jump around from book to book, what I’m in the mood for at that moment.
Things that are on hold:
Of course having these symptoms have put a lot of things on hold. It makes me sad, but I’m hopeful I will be able to continue these in the near future. Including:
Becoming Foster Parents
Losing Weight
Exercising
Taking an ASL (American Sign Language) class. I planned to take an ASL class through a continuing education course at our local technical college, but it starts August 16th. If I can’t even get in to have my pressure checked before August 30th, I don’t think it’d be a good idea to start trying to take a class. I’m checking some things out at the library…we’ll see what I can learn on my own.
Gardening – The garden has been severely neglected. It’s time to start thinking about a fall crop, but that isn’t happening. Our summer crops didn’t do very well. As I think I’ve said before, we’re learning, and this year we have learned a lot about what NOT to do.
Some art projects I have started, and some I have planned.
Some things I want to do to the house. I’m amazed at how fast our house can get out of order once I’m disabled. This house is just too big for us. Especially when Stuart has to do everything alone. (more on this later.)
Almost everything except staying flat on my back….ugh!
Coming soon: Some of those wonderful posts I’ve been thinking up….Anger – what are you really mad at?…..Finding my Happy Place….
The headaches have gotten worse. The tinnitus is mind-boggling.
image from Google images, not sure where the original is from.
Dr. Gray wants to test my pressure again. If it’s low I’ll be getting another myelogram to look for new leaks. If it’s high, I’ll probably be put on medication for a while, it may just be taking my body a while to get used to the higher pressure after patching the leaks.
I’m so tired. And tired of just lying around. Staying horizontal is helpful, so that’s what I’ve been doing most of the time.
Keeping a journal. I can now go in with dated material saying how I felt each day. This is thanks to the “morning pages” I’ve been writing for the Artist’s Way workshop. I write about much more, but of course, my health is in the forefront of my thoughts right now, so I’m writing a lot about that. Now I’m just going to go through my journal, and make a condensed diary of my symptoms. I should have been doing this all along, but I hate it. I don’t like to think about my symptoms on a daily basis. They seem worse when I actually sit down and think about it.
I’m still trying to get my Day Zero list completed. I’ve completed 3 things, and have 10 in progress. Anyone else out there have a list of goals they are trying to complete? I’m finding this very motivating. I bought a Living Social offer for a local Art Class! And we bought one for Swing Dance Lessons! Yes the dance lessons will have to wait for a little while, but the offer doesn’t expire for 6 months. I’m confident we’ll be able to do it before then! I’ve been looking at the classes that are offered at Happymess (the place the offer is for), I’m hoping to learn how to Batik, or perhaps I’ll do a figure drawing class, or even a still life?? So much to do, so little time….just 978 days left, and 98 more things to complete.
I’m not sure how much The Artist’s Way workshop is helping my creativity. I find that most of the time in my “morning pages”, I write about being chronically ill. Perhaps that is what is causing my creative block, what is standing in my way?
However, I do like the fact that I have to take at least 1 hour each week as an artist’s date. I haven’t been able to do some of the things I wanted to do for these dates, like go to the museum, to on a gallery walk…things like that. I’ve had to improvise, and that’s a good thing. It’s teaching me that I can create, something, even when I’m flat on my back.
One of my 101 things to do in 1001 days, is to learn Photoshop. So today, I created something using Photoshop on my artist’s date.
The flowers in this are photos I took of flowers in my garden. Now I’ve learned to cut out subjects from photos and paste it in another image, and I played around with the filters, and text. I’m learning! And I had fun!I’m feeling much better about things. Don’t know why…just kicked myself in the butt, and said enough!
Still having the disabling headaches, and I had no idea that tinnitus could be this loud!! I think I will go insane if I have to hear this all the time. Oh, wait! What’s that you say? Too late. Yeah, I know. Did I mention that the sounds in my head are not voices? Well, not lately anyway. Ha!
Yes, I’m in a strange mood. You have industrial machinery running inside your head for days and see if you don’t get a bit punchy! Today for about 2-3 hours I had the machines in my left ear, and a high-pitched squeal in my right…What the??? (I’m trying to stop swearing. Probably not the right time for that, but I’m giving it the old college try.) What does that mean anyway? “The old college try”? Hum.
Well, I sat up for about 30-45 minutes to eat dinner, and now I’m getting a headache. Sounds like I still have low pressure. ??? Maybe??? Oh, who the….oh wait, I’m not swearing….um….who in the world knows? (better?)
Dr. Kaylie and Dr. Gray agree I should have another lumbar puncture, and if my pressure is low, I will have another myelogram and patches the same day. Next, Thursday we’ll find out my symptoms either have nothing to do with Cerebrospinal Fluid, or I’ll be getting more patches. Can you guess which answer I’m hoping for?
At first I was very concerned, why would I be getting new leaks? What would this mean for the future? Will I have to do this over and over and over again?
Then Stuart said something that made so much sense, I thought, “Why didn’t I think of that?”
Imagine you have a water hose, and it has a few leaks in it. You patch all of the leaks but one, at first that one leak doesn’t seem to get any bigger, but after the pressure builds in the hose the leak gets bigger. Or there may be other weak places in the hose, and since the other leaks have been patched and aren’t there to release the pressure, they start to leak.
Doesn’t that sound obvious? He’s so smart! And made me feel much better. Surely, there will be a finite number of weak spots, and this will happen a finite number of times!
I’m a little nervous about going through this again. No, the procedure really isn’t that big of a deal. The worst part is getting the IV before the procedure. As the phlebotomists say, “I’m a difficult stick.” I have very small veins that like to roll away from the needle. To make it worse, they keep it cold in there, and that just makes my veins shrink up. It usually take them a number of tries before they can get the IV in.
Kind of ironic huh? I’m going in for a Lumbar Puncture, possible myelogram, and CSF patches; and I’m more concerned about getting the IV than anything else. Guess I trust my doctor, more than the phlebotomist. hummm.
Picnic with Ants 