So much to say….

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain

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….

13 thoughts on “So much to say….”

  1. I appreciate your ability to read and post when you are feeling so rotten. On the other hand, without these things you’d probably have lost your mind by now. I know I would, too!

    Sometimes when we are in the midst of physically suffering, it is easy to minimize the situation. But from the outside looking in, I’d say Dr. Gray wanted your pressure tested like yesterday.

    Your symptoms sound really quite extreme and I would think messing around with your CSF pressure might have other consequences than just making you feel like the hell you do.

    Pick up the phone/email, whatever it takes, to communicate to Dr. Gray that her scheduler has you in for the 30th. That’s a long way away from “now!”

    You’re a tough cookie, Wendy, and I really admire your stamina in coping with all of this. Better days are ahead. 🙂

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    1. Angelea, Thank you so much. Today has been a better day, so writing was helpful. And I would have lost my mind by now if it weren’t for the great support from my fellow chronic illness peeps. (like you) As long as my headaches stay below a 7 – I can read. It helps to just be quiet and concentrate on the words. I can’t read on a computer when my head is hurting, but books (and the Kindle) are different. No back lighting.

      I’m so sorry about what the post looks like. I don’t know why the spacing between paragraphs didn’t work.

      Thank you again for believing in me. I can do this!! I know I can!

      I’m going to email Dr. Gray right now.

      wendy

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  2. If Dr. Gray sent you an email, will she respond to your email? When I need to talk to my doctor and his receptionist says he is too busy, I wait until office hours are over and then have him paged by his answering service. Usually works. I’m so sorry you have been feeling so crappy, I am surprised that you find the energy and spunk to do as much as you do!

    I haven’t been posting/commenting much lately…feeling rotten too.

    mo

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    1. Mo, I have been amazed at how much my doctors from Duke stay in touch with me. If I email either Dr. Gray or Dr. Kaylie, they will email me back within a day usually. They always call back personally within a day. Dr. Gray even gave us her pager number, and her personal cell for emergencies. They really are wonderful to me. I think that’s one reason I can keep the faith.

      I’m sorry you have been feeling rotten lately. I know Paul missed you at his concert!! When I saw him Linda performed with him. It was a very nice show. It’s been so long since I’ve been able to go to a concert….or was willing to pay for one. : )

      I’m really not getting much done. But I’m trying to do a little.

      thank you very much for your encouragement! wendy

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  3. Excellent! It is so hard to be proactive when you are sick, but track her down and make sure she agrees that the 30th is ok with her.

    I DO have faith in you. You’ve made so much progress until this last setback which means you can get there again. My mantra during bad spells has to be “this too shall pass.”

    Keep us all posted as you can. 🙂

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  4. http://judithwesterfield.wordpress.com
    You may already be aware of Judith and her various creativity projects. She does workshops, etc. There are great links at her creativity to the max website (the url above).
    Sorry your tinnitisis (spelling) is so strong — my hubby has it to a degree, so I know that it must be very hard. Sorry to read your can’t do right now list. I hope that you will be able to add those things back in soon!
    I also hope your dr. can arrange a sooner app’t and that will help her figure out what’s going on! Good luck!

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  5. I’m going to warn you now, if I ever win big in the lotteries, I’m coming down to try and get your doctors to see if they can help me. Just warning you.

    I hope you receive an answer today on your appointment. Hopefully, Dr. Gray can find a way to get you in sooner.

    I have to get back to reading. I downloaded Kindle to my laptop. I’ve read a couple and have 3 books that I’ve started, but have not kept reading. I should get in the habit of reading before I go to bed or on the balcony in the evenings. I had the laptop out there the other night and listened to some Ted videos after dinner. The temperature was good and it was really quiet because we had a long weekend last Monday.

    Maureen

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  7. Wow! Phylor, thanks for sharing this link and, Wendy, thanks for posting it. I do not consider myself the least bit creative or artsy though those of you that are fascinate me! But this woman’s work has me super interested in trying some of her techniques myself.

    Funny, I see that she lives only an hour from me!

    Thanks again to both of you.

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    1. Hi Angelea: I’m glad you liked the link. Judith is a very creative, very warm and compassionate woman. Her blog is full of great creative ideas, and she talks about the workshops she gives, etc.
      Perhaps you’ll get a chance to met her since you live an hour away. She runs a series of different workshops by herself or with other creative folks.
      Unfortunately, I live on the opposite coast. I’m waiting to win the lottery so I can go visit!

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  9. Hi Wendy. I do hope you complete the Artist’s Way workshop even though I don’t know much more about it than what you’ve mentioned in your blogs. I am not a “religious” person, but I do have a strong Christian faith that is very deep and personal. Otherwise I don’t know how anyone could survive this stinking existence of a disease. I get angry and ask why, but when I feel I can’t take it anymore I have to give it over to Him…daily. I hope I haven’t overstepped here, I just felt led to share that as I lie waiting for sleep to come tonight.
    Thinking of you,
    Robin

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