So much to say….

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain13 Comments

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….

Another Lumbar Puncture in my Future

On By WendyIn Chronic Illness, CSF, Meniere's Disease8 Comments

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.

Artist’s Date Week 3 – let’s play with Photoshop!

On By WendyIn Chronic Illness, CSF, Disability, Meniere's Disease, PainLeave a comment

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?)

happy thoughts!

 

To Post or Not to Post…

On By WendyIn Uncategorized7 Comments

To Blog or Not to Blog….that is the question that has been running through my mind for days.

When I am down I don’t like to unburden myself on others.  Should I post about my feelings, doubts, questions, depression….?  Or should I just keep quiet.  Write in my journal, talk to my hubby…but basically, just keep it to myself?

Guess you know what I picked.  Finally.

I decided to spill it, at least to you guys.  I have to admit this is hard.  Once when I posted something on facebook about how I was feeling, someone asked if I was having a pity party that day.  Well, yeah, maybe, but can’t I have one now and then?  So what!  By the way, what I said wasn’t that pitiful, it was just an observation.  Something like: I wonder if I lived alone, and died, how long would it take someone to notice?  I had been closed up in my house for a long time, and the only person who I’d been in contact with was my husband.  OK, so maybe it was a bit of a pity party.

Today, you are formally invited to a pity party, in honor of ME!

As everyone knows I haven’t been having the best of times for a little while now.  I had CSF patches again, 13 days ago.  I don’t feel like I’m making that much progress.  I’m happy to say I’m not spinning.  (although I have come close a couple of times)

My back still hurts.  I’m having headaches….a lot of headaches, that don’t seem to be touched with meds.  The tinnitus is going up and down, it’s very confusing.  I had one day where I could hear out of my left ear.  Not perfect of course, but almost back to the way it was a couple of months ago.  Just one day…why?  When I wake up in the mornings the tinnitus is so much worse…why?  After I’m up for a while, I start to get a headache, but the tinnitus gets better….why?  It just doesn’t make sense.  The tinnitus being worse in the morning after I’ve been lying down all night should mean high pressure, but the headaches after I’ve been up for a while should mean low pressure.  I’m so dang confused!  And why is my back still hurting?  Just on one side, mainly in one place.  A place where it really hurt when they were patching.  And it itches!  One little spot on my back, and I can’t reach it!  Thank goodness for getting a back scratcher for my birthday!

Why am I still surprised by how little people reach out?  Why does it still hurt when my father doesn’t remember my birthday?  It’s not very smart, the same circumstances, the same people, yet I expect a different outcome…yeah, don’t think it’s going to happen.  Need to just get over it, and move on.  (so why does it still hurt?)

Need to whine a little bit more.  My hip is not cooperating lately.  I thought it was getting better…(does that seem to be a theme here?  thought I was getting better?? hmmm).  Now often when I stand it hurts so bad I can’t put my weight on that leg.  It aches at night, so it’s even harder to sleep.  Of course, the hip is on the back burner right now.  When Meniere’s is in the forefront then everything else takes a back seat.  Darn it.

Went to the dentist on Monday.  I almost barfed when they kept moving that darn chair.  I had to take my meds so I could take it.  Now I have a temporary crown, I’ll be getting the permanent crown in two weeks.  Thank goodness I had some birthday money.  I feel bad enough about all the doctor bills I have, but this…ugh.

Now to make you smile.  This is not the best picture of me, but, it does show a bit of the orange.  (Note, this is after my hair has been washed a few times.  It is not as orange as it was.)

Ok, so you can barely see it in this photo.  But in real life, my streak was pretty orange.  Luckily, it’s starting to look a bit more like strawberry blond.  Not too sure that’s a good thing on me…but it’s better than Bozo Orange.  : )

So, to sum up:  I feel like I really shouldn’t be complaining.  I’m not spinning.  I remember when I said I would give anything for that, it was all I wanted.  Now, I’m being selfish I want more.  I want to not have headaches.  I want for the tinnitus to be at a bearable level.  I want my hip to work right.  Am I asking for too much?  Possibly.  If so, I’ll learn to live with it.  As long as the vertigo is gone, I think I can manage.  I’ll just have to re-evaluate live, and adjust.

Oh, thought you might like to see a little project that I did.  A dear friend of mine’s little girl was celebrating her 10th birthday, and she loves Penguins…so I sent her this card:

Happy Birthday card for Ayla!

 

Not a Smooth, or Quiet, Ride

On By WendyIn Uncategorized8 Comments

The recovery period this time is not going as smoothly as I remember it going before.

I’m hurting…much more than I think I did after my last patches.  I even read back over my posts from that time, and I barely mention back pain at all.  Day before yesterday I felt that the pain was almost gone, then yesterday the pain came back with a vengeance.  Today, the pain is still there.  My back feels stiff, sore, and like I have been beaten up.  I already hate taking pain pills, and I don’t feel like they are doing much good.  (at least they help me sleep)

Last night we were watch a movie and I started hearing this very loud roaring sound.  It sounded like some kind of machinery, or perhaps a helicopter flying right over our house.  I asked Stuart what that sound was…actually I think I may have screamed it, trying to get over the noise.  He said there was no noise.  I kind of freaked.  How could he not hear that?  It’s so loud!!  He tried to calm me, telling me that it was just a new kind of tinnitus…but I was so upset.  I decided to take half of a Diamox, to see if it would help.  If my pressure was getting too high it should.  It didn’t.  I calmed down, and watched the rest of the movie.  Thank goodness for subtitles.  One of the first Agatha Christie mysteries where the first person I thought was the killer, really was.  Of course, I doubted myself a number of times during the show, but still…first instincts count.

I finally got to sleep, even with all the racket in my head.  After a while it sounds like very loud white noise.  I woke up this morning and it wasn’t that loud.  But within an hour after getting up, it got just as loud as it was last night.

Dr. Gray just called.  She said the pain can ebb and flow like this.  (well, I don’t like it!)

She also asked if I would take a whole Diamox to see if it helps with the loud roaring.  If it helps then we know it’s high pressure; if it doesn’t, or if things get worse, we will know that my pressure is low.

A few hours later:  I took the Diamox about 1pm, about 20 – 30 minutes after taking it the roaring got even louder, and I started feeling light-headed.  But then 3pm , the roaring got better.  Still loud, but not so loud that I feel like my head is going to explode.  Now it’s about 4:30pm, and it’s getting very loud again.  So what did we learn?  I have no frigging idea.  We’ll ask Dr. Gray and see what she says, I have a feeling she’ll say, “Interesting”.  And suggest something else.

The pain is better than it was yesterday.  Stuart just asked me how many pain pills I’ve taken.  I don’t think I’ve taken any today, I may have taken one right after I got up, but none since then.  He said I seemed drunk.  Hummm.  That’s kind of disconcerting.

I may not be feeling the greatest right now, but my herb and flower garden look great.  (the vegetable garden has been a learning experience, mainly learning what not to do.)  I thought I’d share a photo of my Echinacea plant being visited by a little butterfly (unfortunately his wings are closed).

In the background to the left is my Oregano, it is impressive!   To the right is the Lavender, it’s growing, not as fast as some of the other herbs, but since this photo was taken it has gotten bigger, and it’s starting to flower.  In the far back is the green from the wild flowers.  I think I planted way too many seeds.  They are starting to bloom, I’ll share more photos of them soon.

I’ve started the Artist’s Way workshop.  Didn’t get all of my Morning Pages done last week…I wonder why? (every day I’m supposed to write 3 pages of just stream of consciousness writing, first thing when I get up…I often do them in the evening though, I like how it unburdens the day, and lifts those thoughts away so I can sleep better.) But I did get my Artist’s Date in.  (every week I’m to make a date with myself spending at least one hour doing something to nurture my artist within.)  Since I was laid up for a lot of this past week, I spent my Artist’s Date reading about Art and Artists.  I found some nice free books for my Kindle, and I’ve been enriching my knowledge of art.

I’m also participating in the Day Zero Project.  You make a list of 101 goals you want to complete in 1001 days.  You can see my list here: Wendy’s 101 Goals.  A neighbor of mine talked about working on this project on Facebook, and it inspired me.  Want to join me?  If you do, you will be helping me complete #11 on my list!

Hope everyone is doing well and enjoying the summer.  I’m sure I’ll be back on my feet soon, and thinking this was no big deal.  Just ready to get it over, and move on!

Broke my Crown, Orange Hair, and CSF Patches.

On By WendyIn Uncategorized4 Comments

This week has been full of strangeness.

On Tuesday I was eating a piece of pizza and all of a sudden my crown shattered.  I looked and looked and found nothing in the pizza that could have caused it, I guess it just wore out.  Of course, I can’t get into the see the dentist until the 18th.  So glad it doesn’t hurt!  This is the only tooth I’ve ever had a cavity in.  *sigh*  This crown is 12 years old, guess it’s just time for a new one.  Glad it waited until I got my birthday present from my father-in-law!  When I got my crown the first time it was around $600.  Anyone know how much they run now?  Ugh!

As you might remember, I was thinking of covering up some of my gray.  On Wednesday night I decided to put henna on my hair.  It was for dark brown hair, it was supposed to give my hair a nice sheen, and make the gray a light brown/blond.  Like highlights.  Instead, I now look like a punk rocker with orange streaks.  (it might be cool if they were purple)  Perhaps I’ll get a photo soon, but I look too dreadful to have a photo taken now.

Yesterday I had Lumbar Puncture #4, and it read almost exactly the same as the LP Dr. Gray did before my last patches.  So they re-patched all the old spots and a couple of more.  8 all together.

I was really hoping my hearing in my left ear would improve, fast, but not yet.  However, my headaches are much better.  When I close my eyes I don’t see shadows rotating.  I don’t know about every day disequilibrium, I’ve just been lying around for the past few days.  Taking it easy, keeping my back flat.  I was pretty sore at first, but it’s better.  Taken just one pain pill so far today.  : )   Since Thursday, I’ve just been lying around recuperating, and sleeping.

Luckily, my good friend Kym sent me the coolest “recycled” gift for my birthday.  (We always try to give each other either a recycled gift, or something we made ourselves.)  This year she gave me a Kindle!  It wasn’t even opened.  Evidently someone gave her one and she already has one.  (I know she has an iPad, perhaps she doesn’t need the Kindle?)  Either way, I’ve been loving it!  It’s light, and the screen isn’t like a computer screen, I feel like I’m looking at a printed page.  I’m having a ball exploring all the free things I can get.

Anyone else out there have one?  Any tips?

Ramblings on my Birthday….feeling better.

On By WendyIn Uncategorized11 Comments

I’m writing right now because I can’t sleep.  So I may ramble a bit.  There will probably be some interesting information here…but some of it will probably just me running off at the mouth…or at the keyboard really…..

Of course, I make an appointment with Dr. Gray to have another lumbar puncture, and I start feeling better.  (Isn’t that always the way?)

My hearing is still way down in my left ear, but I don’t feel as dizzy, as off-balance, and no mini spins for the past couple of days.  *shrug*

As you probably know, today was my birthday.  (well, seeing what time it is, perhaps I should say, yesterday was my birthday.)

I had a very nice day.  I normally, really like my birthday, and want to do something special.  Something exciting, with friends….the whole sha-bang!  This year, I was feeling pretty low-key.  I don’t really feel like it was by birthday.  But it was a very nice day!

The hubby and I went to the mall and I did some shopping!  I haven’t shopped at all this year.  We’ve been trying not to buy anything new.  So everything I’ve been buying has been second-hand.  But today, I decided to do a little shopping.  I needed a new bra.  No, I was not going to buy a used one!  Ew.  I’ve gained weight since I bought the last ones, and they have stretched out….well you get the picture.  I’ve noticed when most women gain weight they get bigger boobs.  I don’t.  My band size gets bigger, but my bust size is the same.  For example, I’ve worn a 32DD, 34D, and a 36C.  So as you see, my boobs stay the same.  (If you are a man reading this you will not understand, but I think most of the women will.)  Bra sizing is so weird.  The way you are supposed to measure it is just strange to me.  I measured a 38B today, and the first bra I tried on that size, fit.  But I wasn’t crazy about it.  The next one, the band was too big…so I ended up with a 36C.

I also got a lovely dress!  We were shopping at Macy’s, both of the items I got were on sale, and I had a $20 off coupon if you spend $50 or more, so my total came to about $34!  hehehe!

We also went by the game store, and picked up a couple of used Wii games.  I love the fact that if you buy pre-owned games you can try them out for a week…or is it two?  Then if you don’t like it you can take it back!  I will never buy a new game.  We’ve been having a ball lately playing games.  I used to hate playing any type of video game, but I really like the ones that make you move.  I told Stuart last night that it was the first time I played a video game where I didn’t feel completely inadequate.  I was keeping up with him!  That is saying a lot!

I’ve been working on losing weight.  I think I mentioned I’ve lost 6 pounds.  I stepped on the scale a couple of day ago, and it was down a few more pounds.  But for the past couple of days, I…well, I’m going to be blunt here…I’m so constipated.  I do not get this way.  I’m so uncomfortable.  I broke down and took something tonight to try to help it along…I hope it works.  I didn’t cut down on my veggie intake.  No I haven’t upped it, because of the fructose intolerance.  I haven’t been eating any grains though, and I’m thinking that’s what is going on.  But if I add any back in, I stop losing weight.  *sigh*  Guess, I’ll have to start taking fiber.  (I must confess, today I completely went off my diet!  I had some Gluten Free carrot cake, and some ice cream….Hey, it was my birthday!!)

I was thrilled that I got Just Dance, for the Wii.  I got it a little early, so I’ve been playing it for about a week now.  It’s so much fun!  And what a work out!!  My husband also got me exactly what I asked for, a back scratcher.  There are just too many times I have an itch I can’t scratch!

My birthday was a good one.  I spent the day with my hubby.  I received 56 Happy Birthday wishes on Facebook, and still counting….(funny though, nothing from my father or my sister…hummm.  What a supportive family I have.)  Stuart and I played games on the Wii for hours…..it was a nice day.

Now, for tomorrow…I need to go to the grocery store, do some chores around the house, and I’m getting a massage!  Yeah, it’ll be a good day.

Some day soon, I’ll be getting my darling husband to take me out to dinner…we didn’t do that today…and I can wear my new dress!

Another Possible Chronic Condition – SVT

On By WendyIn Chronic Illness, Health, Medical Tests11 Comments

I saw my neurologist yesterday as a follow up for my migraines.  Since I’m having another lumbar puncture next week, she decided to wait on adjusting my medication.

She asked me if I’ve fainted recently, and I told her about my near fainting episodes last week.  Sometimes I’ll have a rapid heart beat for no reason.  You may recall my post about Halloween night last year, “Guess What I did Last Night”.  (It about a trip I took to the ER because of my rapid heart rate.)  Last week I had two of those episodes, however, with these I nearly passed out both times.  That hasn’t happened before, and I don’t normally have them so close together.  One time I was lying in bed reading when it started, when I was at the ER they told me to put cold water on my wrist and/neck when this happened and it should help.  So I got Stuart to get me a wet wash cloth, but it wasn’t very cold, so I got up to run water on my wrist in the bathroom…and the world started to go dark.  I could feel me passing out and just laid down on the floor real fast.  Soon it past.  When I got back up and in the bed my heart beat had slowed down.  A couple of days later I was taking a bath, and it happened again.  I tried running water on my wrist and started feeling like I was going to pass out.  I ran cold water on my head, and it helped.  But now I realize just how dumb it was to stay in the bath when I was feeling faint.  Yeah, not bright, I know.

After hearing about these incidents, my doctor thinks I may have Supraventricular Taachycardia (SVT).  But it’s hard to definitely diagnose this because once get to the hospital the episode has often passed.  Next time it happens, I’m supposed to make sure and get a heartbeat count.  Stuart tried this last time, but he lost count because it was going so fast.  He thinks it was between 140 and 160 beets per minute.  I’ve tried counting it before and got about 200 beats per minute.

This is often not a serious condition and doesn’t need any treatment.  However, my doctor is concerned because of the faint feelings I’ve been having.  That could be dangerous, or signal that this is something a little more serious.

Right now, I just have to wait for another episode, and take good notes.

She also saw Stuart today because of his episode.  He will be going in for a EEG to check out his brain waves.  She wants to rule out a seizure.  That could make it hard for us to foster/adopt.  But I’m much more concerned about his health and safety.  She admitted that she sees many people who have strange episodes happen just once, and they can’t figure out what happened, and it never happens again.  She just wants to rule out some things.  She also mentioned that he could be having a certain type of migraine.  It would cover the symptoms he had, and you don’t have to have a bad headache to have a migraine.  We’ll be keeping an eye on him for a while too.  The EEG isn’t planned until late this month.

Birthday musings, and getting creative

On By WendyIn Chronic Illness, Life, Uncategorized11 Comments

How many of us start to look at our lives and come up lacking in some way, especially around our birthday, or the beginning of the year.  We make goals, or resolutions….sometimes we actually keep them.

This year is no exception for me.  I knew I was getting close to my birthday because I started looking in the mirror with a more critical eye…humm, not as young as I used to be.  Heck, I don’t even think I look as young as I did last year at this time.  Gained a few pounds, more gray hair, a few more wrinkles, and these little dark patches on my face…could they be *gasp* age spots?  {shudder}  Yes, my illnesses over the past couple of years have worn me out.

a look in the mirror

I’m already trying to lose weight, 6 pounds so far!  Now if I can just keep it up.  I’m also trying to get some more exercise, that hasn’t been going as well as I’d like, I get dizzy every time I exercise.  Hopefully, that won’t be the case much longer!

I thought about coloring my hair, but do I really want to put those chemicals on my hair.  I finally got to the point where I think all of my hair is naturally my color.  Yes, some of it is gray…but it’s me.  I’ve always liked my cool gray streak on the left side, right in the front, but now it’s on the right side too.  I don’t think I’m looking cool any more, just old.  I’m thinking of putting a natural rinse on it to make it a little shinier, a little browner, and possibly make the gray look more like highlights.  It should just wash out.  If I decide to go this route, I promise I’ll post pictures.

For the wrinkles and dark spots (I will NOT call them AGE SPOTS!), I’ll use a bit more moisturizer, and perhaps some lemon juice and hydrogen peroxide applied to the spots will help lighten them.  We’ll see.  The hubby pointed out that there was a Groupon for a Chemical Peel.  Ewww.  I told him I was not vain enough to hurt for it!  (I don’t really think he understands what a chemical peel is.)  I can’t tell you why, but I got so tickled when I told him I wasn’t vain enough to hurt for it, I mean I just laughed and laughed.  Stuart thinks it’s very amusing how I crack myself up sometimes.

I’m thinking I will go out and buy me a new outfit.  Something that fits better, that makes me look more put together.  In other words, not the over sized T-shirts and shorts I’ve been wearing.

The Artist's Way by Julie Cameron photo courtesy of http://www.theartistsway.com

I’ve also decided on joining a group on another blog Ton-Fifty-ONE is going to be having a workshop covering the book The Artist’s Way, by Julie Cameron.  The workshop is 12 weeks long, and will start on July 4th.  Just 2 days after my birthday, how fitting.  I’ve owned this book for years, and I’ve tried to go through the process more than once, but I guess I’m either not good at following through something like this without a little push, or perhaps it was made me confront too many issues?  I don’t know, but I’m willing to try it again, and I’m sure that with the push that a group will give me, I can do it this time.  Just 12 weeks…3 months…to “discovering and recovering my creative self”.  If anyone wants to join me on this journey please come along.  I know I can use all the motivation I can get!

My creativity got bogged down by my chronic illnesses.  My biggest goal this year is to use my creativity to help me with my illnesses.  Help express myself…  The words are failing me, I can’t seem to get out what I want to say.  I guess I’m trying to say, I believe in art therapy….and so much more.

Another Lumbar Puncture..Myelogram…CSF Patches??

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain4 Comments

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?”

photo courtesy of http://www.superstock.co.uk

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.