Author: Wendy

I'm taking a journey learning to live a mindful and happy life, while living with Chronic Illnesses. I'm a bit of an idealist. I want everyone to be happy and think everyone should want the same for others. I don’t understand mean people. I cry easily and laugh often. I love cartoons, Dr. Who, and my wonderful husband...not in that order!

Taking Control…even a little bit.

On By WendyIn Chronic Illness9 Comments
I did not do this piece of art work! However I really admire the piece and thought it was perfect for this piece. Please check out the artist other works.
"Taking Control" by http://katelynalainstudio.com

So…Yesterday I was having another icky headache day.

I hadn’t been able to hear well for days.  The day before I had vertigo for hours.  Not bad, throw up for hours vertigo, just a slow spin that made me nauseous and was most annoying, but was better if I focused up close.  I could not find a position I was not having vertigo, I also had the other things that often go along with my Meniere’s attacks.  Diarrhea, and those wonderful hot moments, and the complete exhaustion.  So I’m thinking possibly it was a Meniere’s attack, not Intracranial Hypertension.  Especially after what I realized next:

I was lying in bed and realized I can hear today.  Not tinny sounds, no strange warp. just hearing! Clear sounds!  I decided to take control! (and I have been feeling completely out of control of everything in my life, so this was a major thing!)  I decided to dope myself up.  I hate to take too much migraine medication or pain medication because I do not want to get dependent on it, or have rebound headaches.  But yesterday, I decided to take a rescue medication, and a pain pill, and carried a second pain pill with me in case I needed it.  I also carried emergency Meniere’s med’s so I was prepared, to venture outside.

Yes, I wanted to go outside to possibly hear a bird.  After all, who knows how long this hearing will last?  Unfortunately, it was the wrong time of day to really hear a bird. Some people were just starting to come home from work and things like that.  It was such a pretty day.  I sat on the porch, I’d told Stuart I’d bring my phone outside with me in case I needed him, he said “I’ll do better than that”  and out he comes with me.  I was a bit sad, all I heard were cars, and sirens.  Human made sounds.  Stuart said, “I think I may have heard a bird.”  BIG MISTAKE!  I said, in a much nicer tone than I was thinking…because I was feeling kind of raw about my hearing…”Ummm. Please don’t do that.”  “What?”  “Don’t point out to me things you can hear that I can’t.  That’s not helping the moment, do you understand that?”  He said he did, and we went on to do some other things.  I will talk about…but may I say, he later did point out another sound he heard.  I know at that time it wasn’t, ‘I know you are trying to hear this thing so I’ll point it out so you can listen and maybe hear it.  It was more…Oh, I’m excited I’m hearing this, I grew up in a place where we didn’t hear sounds like this.  So I over looked it. And I did hear it, but if I hadn’t, it would have hurt.  Even if I have excepted it, there are little things that I’m feeling sad about.  Just not knowing.  Will I ever hear you again?

However, as I said, we did a little more.  Stuart planned to sit out on the porch and work while I enjoyed the day.  I asked if he could hand me my pots of herbs.  I have 12 -14 pots.  I can’t remember how many exactly.  I know I grew 11 different herbs last year, but I had a couple duplicates, and one died.  So I’m thinking somewhere between 12 and 14.  He brought them to me one by one.  Many had started to come back.  Some I didn’t think were annuals.  I guess we had such a mild winter they just didn’t die all the way.  The Bee Balm (not technically an herb, but I grow it in with them, the bees like it.) is already 6 inches high and very, very full.  It never bloomed last year, I think we’ll see some flowers this year.  The mints are doing well.  I cleaned out the dead branches in their pots and aerated the roots.  So more peppermint, spearmint, and lemon balm (yes in the mint family) this year.  The Lemon Balm has also taken off.  There is a full pot of it already!  YAY!  It keeps the mosquitoes and other bugs at bay.  I need to make sure it’s beside my Basil so the Japanese Beetles will leave it alone.  I really hate those things.  They aren’t very smart though.  If they do find the basil, I just move it, and it takes them a while before they find it again, so I move it again.  Stupid bugs, but they can strip a plant….oh they don’t like oregano either.  so I put the Basil between the Lemon Balm and Oregano. Great deterrents!   The Thyme came back!  And of course the Rosemary never left. The lavender kind of went all gray and looked dead, now it’s looking like it’s turning green.  I think I should have cut it back.  I had a lavender plant before that stayed green all winter, this must be a different variety.  So I have a few things to replace…like the Basil, and marjoram, think we may try Chocolate Mint this year, just because it sounds so decadent, not sure what else I may put in.

I may not be able to keep a garden, but my herb garden.  I just have to do it.  I have to feel that much in control.  Just a little.  (and please oh please, let me be able to start cooking again soon!!)

Stuart did take a break from working, and cleaned out the little flower bed, got the day lilies ready to bloom, and got the bed ready to add some compost.  So he will add a little compost and some flower seeds this weekend, and we will have our little wild flower garden surrounding our herb garden pots.  Minimal fuss, and muss, it just has to be watered.  (and I’m thinking about paying the next door neighbors boys to do it when we are having a rough time.  They should be 12 -14 now, I think they can be responsible, and she’d like it.  One is her nephew/ adopted son, and one is her foster son.  A great family.  She was one of our sponsors when we were going to foster.)

OH….I did hear some insects making those noises they do.  And a very big BUMBLE BEE thought I was very interesting, and buzzed me!  REALLY!  Oh Goodness Gracious, I had a Bumble Bee talk to me.  I have an upcoming post about it.

So control.  I’m working on feeling like I have a little bit more back.

I tried to start dinner today.  I was feeling pretty good, and almost fell out in the kitchen.  This bitch is weak!  So how much is the head crap…granted I did start feeling like I had a very SMOOSHY HEAD, but how much is me just being so weak? We went by the grocery store on the way home from the doctor today, we left and Stuart asked if I could carry these two light bags, no problem…after a very short distance.  BIG PROBLEM.  I was soon swearing at Stuart, “I don’t know why you can’t ever roll the ($*%ing cart out to the car anyway!”  He keeps telling me to give them to him.  NO, he had enough, and I had them.  I’m dying, the muscles in my shoulders are screaming.  Then I think, well if I have to lift these thing put them to use, and start using them as weights to tighten muscles I need tightening.

And now it is about 8 hours or so later, and I am so sore I can barely move.  From carrying LIGHT grocery bags, and cutting up a chicken!!  what has my body been reduced to?

But I am determined to take more control over more of my life.  I don’t like feeling like I’m not in control of anything!

Today I saw the headache pain specialist (neurologist specializing in headaches).  She is changing up a bunch of medications.  Taking me off 2, adding 1, and putting me on a round of steroids to see if we can’t knock this headache OUT, and give me a fresh start!    I’m feeling good about the changes. Unfortunately, it’s going to take a while to ramp off the meds I’m on, ramp up on the new meds, and get it all sorted out.

Dr. Gray wants to do another Lumbar Puncture.  I’ve decided not to go that route.  I’ve decided to wait and see what this medication does first.

A little Control.

it feels good.

My new friend Mary, will be proud of me.  (I know my many other friends will also be proud of me, but Mary and I were just talking about this yesterday.)

My Afternoon….

On By WendyIn Chronic Illness6 Comments

This whole brain thing is interesting.  One moment I’m doing pretty good, then, like today, I started feeling a bit woozy, not unusual.  I ask Stuart to help me move upstairs.  He got my computer and stuff said he’d be back to help me.  I thought, I’m not that bad yet, I can go upstairs.  So I start.  I get to the top of the stairs, and my head pounds…this seems to happen a lot, my pressure must raise when I climb stairs.  Then I walk a few steps and start to lose control over my legs.  I just kind of flop like a rag doll.  My head flops, my arms flop, my legs don’t want to listen to me….My body just doesn’t want to listen.  I think I almost killed Stuart, he did not expect to hold all of my weight all of a sudden, he expected to just guide me because I was staggering.  We got me to the bed, I decided I have to pee now.  Of course, I am headstrong, and I have more control over my head now, and little more control over the rest, and I knew if I laid down, I wouldn’t be getting back up.  So I’m determined with minimal help, I’m going to pee.  He holds me, “No. I DO IT!”  He lets go…I slide down…he grabs me, I grab for the sink….”I DO it!  OK….I inch my way there….and grab the wall and can’t pull my pants down.  Uhhhhh….*little bitty voice now*  can you help?  He does, and I pee.  Yay!!!   I kick my jeans off (we’d had an appointment earlier), we get me back to bed.  A little easier, my control is coming back, and get me into a t-shirt.  I lie down, and he says, I’m taking blahbla *yeah not hearing well* down stairs I’ll be back *at least that’s what I got*  OK.   So a little latter, I call out.  “You upstairs?”
He comes in.  I say in a very calm voice.  “I’m having vertigo, I thought you should know, just in case.”

So that was my afternoon.

What? You’re Breaking Up…

On By WendyIn Chronic Illness9 Comments

Let’s talk a little about hearing.

What?  Okay, let’s not actually “talk”, let’s type a bit shall we.  Ah, that’s better, I can understand this much better.

Recently I saw the Audiologist and had my hearing aid adjusted.  By recently, I mean 2 -3 weeks ago.  I was amazed.  I was hearing things I didn’t know I’d been missing.  For days I kept asking Stuart, “What’s that noise?”  I do believe I was driving him crazy.  He kept having to think, what noise? then he’d realize, oh, she heard the truck outside, or the plane over head…I hadn’t been hearing these things.

Then my hearing started to drop.  Just like my left ear did this past summer.  It started sounding like a busted speaker.  Things didn’t just get quieter like it originally did when I lost the majority of the hearing in my right ear.  In my right ear, after each Meniere’s attack I simply didn’t get all my hearing back, things got duller, softer.  This is different. Things sound tinny.  Broken.  Today it’s a bit better, but it’s still there.  For some reason, my left ear’s nerve was damaged.  Dr. Kaylie said it’s not that uncommon with Meniere’s patients.  He said the way I was losing my hearing in my right is more right is more common, but it’s not completely uncommon for it to happen like the left.  My worry is, the left ear’s hearing dropped so suddenly.  It fluctuated a bit for 3 months, then it didn’t come back.

I just tried to watch something on Netflix.  I didn’t realize it didn’t have subtitles, but since I had my hearing aid adjusted if I listened with my iCom (it puts the sound right in my hearing aid) I’ve been able to watch some things without subtitles.  This show started, I could not hear anything.  I checked the volume on my computer, it was all the way up on the computer and on the site.  I could only hear tiny little squeaks.  I would not have thought it was anything if I wasn’t trying to hear something.

It bother’s me so much that Netflix has so very many movies and shows that are not subtitled!!!  It’s ridiculous.  They have a list of some they do have (it is not inclusive) and there is no way to sort it by genre or anything worth while.  You can sort it by title, year, rating, and how many stars it got.  Big deal.  I’m looking for a Sci Fi movie…help me out here.  Geez. We usually have to order discs because more discs have subtitles.  Ummmm, if the discs have subtitles why aren’t they available on streaming?  Really.  Do you realize the market you are missing??  OK.  Off Soap Box.

My worry about the hearing loss.

image from Wikipedia

I know I will need a cochlear implant.  I really don’t want to be completely deaf this late in life.  But will they go ahead and do it with everything else going on?  Or will they need to get this all settled first?  What if I completely lose my hearing in just a few short months?  Or less?  (I know I’m looking on the dark side, I’m just looking at the worst case scenario, and remember I went through this last year.  And right now I can barely hear!)  So, tomorrow we are going to call the audiologist and make an appointment for a hearing test.  So I can be armed when I talk to Dr. Kaylie.  So I can ask him, if I need a cochlear implant soon, will we need to wait until the intracranial hypertension is under control first?  Heck, couldn’t another hole in my head be a good thing?  cause a little leak in there doc, just a slow leak…yeah….then I won’t need the shunt.  hahaha

Does anyone out there run a fever at night?  Or know why you might?  I had all the test run recently…autoimmune, inflammatory…ect.  all perfect.  Even my fatty liver is not fatty.  It has fat on it, but the liver itself is not fatty.  Great news.  No autoimmune markers….so yes, I am allergic to wheat, and intolerant to gluten, but I do not have Celiac.  *sticking my tongue out at a certain doctor*  Why am I swollen every morning?  I had that answered by one of you lovely friends.  Bed bound people retain a lot of water.  So I’m trying hard to move more, but not move so much that my pressure gets all raised and I get a spiked headache.  I’ve also cut way back on the salt.

Anyone else out there have hearing troubles?  I know you are out there….do you think you will ever have to get a cochlear implant?

Such a Tight Group – I’ve noticed 2 AWOL

On By WendyIn Life18 Comments

We are such a tight group, it’s so comforting to me, and sometimes so heart wrenching.

I may not know my on line friends in person, but I feel their pain just as much as I would if they were standing right here with me.  If they have a set back, I feel it.  If they have a loss, I feel it.  In the same way, if they have a milestone, I’m feeling their joy, if they learn something new I’m so very thrilled.  I share in their pain, their joys, and all the things in between.

I also worry when they disappear.

I had an email friend simply disappear for months.  Where did she go?  Was she Okay?  Turns out, yes.  Just busy and lost track of me.  That’s alright.  I’m just grateful she’s alright.

Now I’m VERY concerned.  TWO of my regular blogging friends have been AWOL since the 18th and 19th.  Where could they be. Both of these women normally post almost every day, if they don’t post, they comment on someone’s blog.  I haven’t noticed any action from either.  These women both have some serious medical conditions that could cause them to have to be hospitalized at a moment’s notice.  However, I’m just a blogging friend.  What can I do?  I’ve emailed both.  One I also messaged on Facebook, and messaged her husband on Facebook.  I have both of their home addresses, and considered calling the police to see if they could just drop by to check on them, but they don’t live alone, I know they would have been cared of if something happened.  The best scenario.  Computer crash!  I don’t have phone numbers.  I’ve never thought to ask, heck, I don’t want to seem like an on-line stalker.  And I’m VERY hard of hearing, what do I need someone’s phone number for?  I feel very helpless at this moment.

Most everyone who reads this blog knows Judith of Creativity to the Max – if you have heard from her, please let me know.  I’m worried about our tribal leader.

You may also have heard me talk about Fiona of The Angoaraphobic’s Blog – she has been pretty sick lately.  And from what I can see hasn’t been on line or on Facebook since the 19th.  She isn’t usually out of contact with me this long, especially since my new diagnosis.  I did just message her husband on Facebook, so I’m hoping he will let me know what’s going on.  She’s in Australia, and Judith’s on the opposite side of the country from me, it’s not like I can just jump in the car and go check on them

So everyone please, put your feelers out, if you have heard anything.  Let me know.

You know how this child worries, and stress is not good for me!

Too much Stress & A Headache ranking in my all time top 3.

On By WendyIn Chronic Illness10 Comments

I have been feeling somewhat better, on and off.  So we have thought the medication has been working.

However, I’ve been under a huge amount of stress, not just my illness…so much more. I could probably do a bullet list, but I’ll share one big one.  (Please if you are sensitive to pet issues, do not read this.  Or if you do, please know ahead of time, it has a happy ending – as much as it can be for a very, very old dog.  But she’s happy and fine, don’t worry.)

Last Saturday, we decided to go for a ride, just get me out of the house.  It was a lovely ride.  We had a nice lunch outside, and came home.  We weren’t gone over 2 hours.  When we got home, our dog got very excited, as usual.  You know how dogs can get.  It’s precious.  Unfortunately, Sandy is a small dog and has a collapsed trachea.  It’s common in toy breeds, but Sandy’s about 22lbs, so not that small.  However, she has it none the less.  When she gets excited, she breathes fast, this causes her trachea to close, literally choking her.  She started to cough.  We tried to calm her.  She staggered while coughing to her pad to pee.  She fell down.  Went rigid, threw her head back and yelped a few times…she was seizing.  Then she stopped, everything.  She stopped breathing.  I started to breathe for her.  She didn’t start breathing on her own.  She voided her bowels.  We really thought we’d lost her.  I couldn’t find a pulse, but that’s really hard for me to do anyway.  So I started CPR.  After about 5 -6 rounds, she stuck her tongue out and licked, took a deep breath, and started to groggily move her head.  She came back to us.  We took her to the Emergency Vet.  But now we have to try to keep her calm.  She can still show she’s happy, but no running, so jumping, not getting overly excited.  I feel like we are being forced to take a little bit of her personality away.  But she is 19, and she still seems happy.  The vet says she’s in no pain, and she shows so much love.  We do have a huge problem with incontinence, and realize we will have to replace all the carpet in the house at some point.  But for now.  We have our lover dog.  She has bladder cancer (but they can’t even feel the tumor), Alzheimer’s, cataracts,  hearing impairment, and well she’s just plain old.  But she’s happy, she loves us, and she is in no pain.  So for now, all is good.

Our Sandy Dog.

However, a big stressor!  And this isn’t the only one!

The more stress I have, the more I can feel my symptoms increase.  I’ve never been a big believer when doctors say,”you’re just under too much stress”.  I’ve often felt that was a cop-out.  And sometimes I still think it is, after all. life is stress.  There is no way around it.  But recently, I’ve had more than my share I think.  Way too many tears have been shed, and I’ve been way too tense over situations I have no control over.

I can’t help but wonder if what happened on Thursday had anything to do with the culmination of stress I’ve been under.  On Wednesday night I couldn’t lie down to sleep without having a very bad headache, so I attempted to sleep sitting up.  Not the easiest thing to do.  Needless to say, it was a fitful night.  I woke in the morning, still needing more sleep, but feeling pretty decent.  I decided to travel downstairs and surprise Stuart by making some rolls for breakfast.   Just a mix, nothing fancy.  However, I never made this mix before, and it was the most annoying thing.  It may as well have said, we give you the gluten-free flour, you provide the rest.  Then it said to roll out gluten-free dough!  What?  If you’ve ever worked with GF dough you know you get a very sticky mess, try to roll it out, and you get a glob on your rolling-pin.  I knew this and tried different things.  I have a short temper these days, I get very irritated easily, and then cry.  So I decided to just spoon the stuff in muffin cups and bake it, if it tasted cinnamony, then we had a success….I did not care what it looked like.  That was a very good thing.  They were very ugly, but okay.  Not a mix I’ll buy again, and very glad it was not expensive!  But a nice surprise.

Then I took it upstairs to Stuart, still asleep. As I was climbing the stairs my headache began to get worse.  Bu I was so proud of my ugly cinnamon muffin thing.  I crawled in bed and laid the muffin thing beside Stuart and he woke up with a big smile.  He loves cinnamon.  He looked at me, “You made this?”  I smiled.   “Wow”  I felt good, and proud…and then the headache got worse.  I took something, and Stuart went to make more for breakfast.  He came back, I ate, and took pain and nausea meds.  I took migraine meds.  I’d already taken the medication for the pressure.  The headache climbed rapidly soon I couldn’t focus, I was gagging but nothing was coming up.  I had ice packs on my head.  My headache had risen to a category 10 – go to the ER.  But I couldn’t go.  I just couldn’t.

Severe headache with ice on my head. 3/22/2012

It scared me so much the thought of strange doctors treating me.  With everything that’s going on and my confusion…I just couldn’t think clearly, I couldn’t go.  NO.  I was screaming from the pain, and the fear.  It took over 2 hours to get the pain level down to a tolerable level.  During this time I was panicking, feeling claustrophobic, confused, paranoid….ect.  It was a horrifying afternoon.  My head hurt so much for the rest of the day.  But as long as we can get it to a category 8 or under I can handle it.  Truthfully, I’d rather take the medication I have at home, and not go to the ER and have them give me other medications which I am not familiar with.  Who knows what side effects they may cause.  So many pain medications make me throw up.  I just don’t want to go through it.  And I do not want anyone to ever accuse me of drug seeking.

So, we’ve been playing tag with Dr. Gray for a few days.  We’ll get in touch soon I’m sure.  The headaches are better today.  But still constantly never under a 5.  The medication is working to a certain degree.  The side effects, are not comfortable.  I think we need to figure something out.  Unfortunately, there are only 2 medications to treat this disorder.  If they don’t work you get a shunt.  That’s it.  It’s a rare, not a lot of research money spent on it.  I hate being on this part of the journey…wait and see.  Increase the dose.  Add this drug, adjust this amount…ect….wait and see.  Dang it all, I want to feel better.  Remember when you were little you got sick, you went to the doctor and they gave you some medicine and you felt better. Why isn’t it that easy any more?

Yes, it’s still my blog here….it has many personalities…or something. Plus update on symptoms, and Spring.

On By WendyIn Chronic Illness8 Comments

You may read my blog from your email, and haven’t even seen it….but if you have, you may have said…”she’s at it again!”

and yes I am….I just didn’t like it.  Too busy, and I didn’t like the page color.

So many things I can’t change on Word Press.

And I don’t have Photoshop right now, I’ve been trying to use Gimp…but I’m so lost with that program it were a real book I would have torn it to shreds by now.  Ugh!!!

This looks like me, trying to use Gimp.
(image source free clip art.)

I miss Photoshop, I need to buy it, but I need to buy a teacher or student version…I really can’t afford the off the rack price.  whew.  That’s like the difference between designer clothes and thrift store, for the same goods!  I just don’t get it!

So for now I wait.

Did you know on WordPress you have Pay to change the CSS on your blog?  You have to pay to change your font….yes thank you can get around that one by writing in Word then copying over, but not all fonts copy over right.  And I’m lazy.  I’m just shocked at all the things that are now considered “upgrades” that used to be free.  I know this is a commerce driven world, but it makes me sad when you start with something because it offers certain features free, then it changes.  And I’m sorry, I’m not paying $30 a year to be able to customize my blog.  Heck I can’t even do it, I’d have to get my hubby or my friend Vincent to do it.  And I’d only do it about once a year, tops. If I found the perfect look, I’d probably change very few things ever again!

OK….So, I hope you won’t think ill of me during this transition time.  I like the retro look.  I’m going to try to put little ants in the header, and that will probably be it for a while.  If I can get that done.

Symptom Update: My headaches, had decreased, but recently every time I go to sleep when I wake up I have a blinding headache, like a white light pierces my brain, the intensity doesn’t last for long…but the headache doesn’t go less than a category 6.  So I’m a bit icky most of the day.  But it’s better than it was!

Visual problems are better.  The one that has really stuck around is the…oh I don’t know how to describe it…not only can I not see white on black very well, the white looks gray, but black doesn’t look black-black.  It has this variable tone.  Everything looks a little off in tonal values.  Which is very odd for me.  But I can still tell what color is what, I’m not color blind!!  Yay!  I just can’t tell if they have white  or black added to them.

Very tired.  But not sure if it’s the disorder or the meds, both can cause it.

The Meniere’s has been staying away.  I think the surgery in December worked for that.  The hearing in my left ear, is still gone.  Right is more sloshy.  Had that hearing aid adjusted and I keep asking Stuart, “what’s that noise?”  and telling him to stop yelling at me.  Funny huh?  Now, which will come first, the cochlear implant of the shunt?  Each are inevitable, it’s just which one makes its requirement known first.  Of course, the shunt could be much more important for health reasons, but who knows how long the medication may work.  So much to consider, so much out of my hands.  (don’t you hate that?)

That’s all for today.  Hope everyone is enjoying the First Day of Spring.  (I don’t feel like we had a Winter.)  Everything is blooming at once, my allergies have gone mad!!

I should be saving these for next month.  : )

Calling all Health Activist — Write For a Month Challenge by WEGO Health!!!

On By WendyIn Chronic Illness2 Comments

I’m joining the challenge!  Am I crazy?  Well yes, we’ve already established that fact.  I do have a verified mental illness, and now I have been diagnosed with a brain disorder so you, my friend, are absolutely right when you say, “She is insane if she thinks she can pull this off!”

May we take wagers?   Who out there thinks I can do it?  Who would dare to take that bet? hummmmm?  Well, I will.  I will take you on!  WEGO gives you 2 days that you can miss.  I vow to post no less than 28 days in April!  I’ve already read the prompts, we don’t have to follow them, but some are really good…so you may be seeing a new side of writing from Wendy.

Now for you who want to wager against me……just remember all the things I’ve over come.  And also think…It’s March 19th, and she’s already started writing next month’s posts.  Maybe you should rethink that bet.  *wink*

So here’s the official call to arms…or should I say to computers, laptops, ipads…oh what ever you use these days!

Hey everyone – I just wanted to tell you about a new activity I’ll be doing this April. The Health Activist Writer’s Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. I hope you’ll join me in writing every day about health. It’s going to be a lot of fun and I’d love to see what you have to say about each of the topics, too. All you have to do to join is sign up here: http://info.wegohealth.com/HAWMC2012 and you’ll be able to start posting once April rolls around. Looking forward to writing with you!

You can really tell I didn’t write that huh?

I will be writing a lot more about this new diagnosis of course, and just what it’s like to live with a disability.  If I think of it, and it I feel it needs to be said, you know it’s going to be regurgitated here.  (lovely picture huh?)

If you are a health blogger, jump on in.  Give it a try.  Some of my days may just be a photo and a quote, but as long as it’s appropriate, that’s alright.  We can do it, get the word out, we have chronic illnesses and don’t want to be invisible any more!!

Awards – Versatile Blogger Award (again) and the Sunshine Award.

On By WendyIn Chronic Illness3 Comments

Recently, there have been a few fellow bloggers who felt I deserved an award, or two…

unfortunately, I have been remiss at acknowledging the compliment. Please do not think the honor has been felt any less deeply.  I simply have not had the time nor the stamina to do the honors justice.

Today I attempt to do so.

Each time someone feels that my blog touches them in some small way, and they pass an award my way, I get a tingle from my head to my toes, and a little tear in my eye.  Needless to say, I am touched very deeply.

Each award deserves an individual post, but I’m going to cheat a little and combine 2 in this post.  I hope they will not feel slighted, and you will not feel overwhelmed.

First an award I have received before – The Versatile Blogger Award.  On December 23, 2011, I posted about Mo from Day by Day with Addison girl honoring me with the Versatile Blogger Award, today I write to THANK the Bipolar Muse, and Fiona from The Agoraphobic Blog.  I’m honored these lovely ladies also felt that I deserved this award.  I must be a very Versatile Chick huh?  *giggle*  I hope no one minds, but since I followed all the ruled the first time, let’s say it covered all of the awards..please.  You see, I’m really not that interesting.  Plus, how much about me do you not already know.  Really??

So on to the next award.  The Sunshine Award.  Again, I’d like to say, I am very humbled and honored to receive an award.  To know my words have touched another.  Why else do we make our blogs public?  Fortunately the Bipolar Muse had been recognized a lot the past few months, and she has shared her honors with many of the bloggers who have touched her.  Thank you once again Bipolar Muse for thinking of me!!

Now for the duties for this award:

First step:
Thank the person that nominated you and in my case this is Bipolar Muse.  Done.  But I would like to say, her poetry is like silk that often slips through my fingers only to wrap around me in soft coolness to comfort me.  Sometimes, unsettling, but always honest.  Thinking of her, I came to the realization that Tears are the Elixir of the Muses.

Second step:
Share some tidbits about yourself….that you don’t know…ooooo, hard one…

Favorite color:
First thought YELLOW!  But I do like other colors, but yellow makes me happy.  I smile whenever I see it.  It is the happiest of all colors for me, and I appreciate, many, many colors!!

Favorite animal:
My animals.  Sandy Dog and Max the Cat.

Favorite number:
ummmm, 2 I think….or 7….I like the shape of those numbers, they are close to the same….and my birthday is 7 – 2

Favorite Non-Alcoholic Drink:
Water – then, Mandarin Orange Iced Tea Unsweetened.  It would only be better if I could get it without caffeine.

Facebook or Twitter:
A little Facebook, and even less Twitter, I’m not into social media.  Too sterile for me.

My Passion:
Hubby, Helping, Furry babies, in a way my blog – which leads back to helping….getting better…staying positive…learning more….LIFE

Favorite day of the week:
Any day I get to spend the whole day with my hubby.  No work, no chores for him.  Just us.  Not thinking about what needs to be done, or me being sick.

Favorite Flower:
Daisies, Sun Flowers, Black Eyed Susie’s,  Gerber Daisies, and Calla Lillie’s like I carried at my wedding.

I will pass the Sunshine Award on to the following blogs:

There are so many deserving blogs….those who put Sunshine in my Life!!  I decided to choose a few people who have really reached out to me lately since I have gotten this new diagnosis, (don’t think I have felt slighted by anyone, these people have made me laugh)  And one person who probably has no idea I exist.  I often miss her post because for some reason I can’t get WP to email updates to me, but she is special, and she is inspiring, and you should check her out!!  Especially if you have Meniere’s or hearing loss.

In no particular order:

Sunshine and Chaos  (she has sunshine in the name,  she had to get the award!)

Hearing Elmo (this woman is amazing! check out her blog. she has a Meniere’s, a cochlear implant, and a service dog…and the best attitude ever!)

The Agoraphobic Blog (Fiona will share tissue needed emails with me, and turn around and we’ll share silly poop songs!  And she just got MARRIED!  Thank you for the Shaky Dance.)

It has taken me at least 3 days to get this post together.  Please, no tears.  People keep telling me that my posts are making them cry.  Please do not cry.  We never know what is going to happen.  How things will end up.  I’m sure that I will be able to get through this.  I’m a pretty strong person, and I pretty darn resourceful.  Plus I have one more Award to talk about.

Don’t let this get you down.  Remember I have a great team of doctors.  Had the nerves checked in my eyes checked on Friday all is looking fine.  No damage.  We upped the medication. Today is a rough day, but the weather changed, and it’s hormone time….so it could just be normal migraines.  It just hurts, that’s what I know.  : )

Docs are learning a lot from me.  Who knows, they may be able to save someone else from going though so many tests and maybe they can find a new treatment because of me.  maybe, just maybe.  That would be nice.  I’ll be fine.  Yes, things will be different, but I will adapt, that’s what humans do.

*smile*

So, Don’t cry for me….and you have no idea how much I want to say “Argentina……  hahahaha

We’ll talk more later.

Under Pressure

On By WendyIn Chronic Illness17 Comments
http://blog.spacetec.org/2011/03/18/under-pressure/

A friend of mine, who is also going through having Idiopathic Intracranial Hypertention,because of her pregnancy.  (Hopefully, her’s will go away after the baby is delivered.) posted this on Facebook for me…..I thought you might like to see it, but truthfully, I had no idea how add a video to my blog.

Hhahahaha

So I asked one of my blogging buddies who puts videos on her WordPress blog all the time and is going to school for IT stuff.  (Thanks Fiona) I hope it worked!

(I must confess, I thought I’d already posted this before I got her instructions and you would have just gotten a link to the video.  Then I looked today, and there it still is, unpublished!  Ha!  How lucky!  Now you can see the video embedded in the blog.  It is very well done, and not terribly long, I hope you enjoy it.

I read something about Idiopathic Intracranial Hypertention last night, and I had a light bulb moment.  They used to call this, a pseudo tumor.  Because it acts like a tumor.  I heard that but it didn’t really sink in as to what it meant.  Then the doctor, who I was reading explained, it causes the same symptoms as a brain tumor.  I thought, “Oh Shit!”  This really isn’t good.  A friend of mine had a brain tumor, she really only had horrible headaches then they took it out through her nose!  She’s doing great now!  I thought….I’d rather have that.  (then I felt kind of guilty.  But…ummm, if her’s never comes back, she got off a bit easier don’t ya think?  I’m sure she’d agree, I know she would actually.)  I am such a bitch lately.  But I do love this friend, she has been a good friend to me through all of this and I didn’t mean I’d switch with her, I’d just like to have something easier to cure.  Or be able to cure at all!

But there are options, I’m in good hands.  Called Dr. Kaylie’s office today, well Stuart did. and he said if I needed a shunt I’d be getting an LP shunt.  Meaning it would be attached at the Lumbar Puncture site, not to my brain, so it would not interfere with the cochlear implant.  So I will never be completely deaf!  Whew!  One thing less to worry about.

Stuart also asked about disability, Dr. Kaylie said to just send him the paperwork.  My psych. said the same thing.  I think I might have a chance at this.  A vestibular specialist, a psychiatrist, a neruoradiologist, and a neurologist…and possibly an orthopedist all saying I can’t work.  Someone should listen.  But I was just looking at the paperwork, and it asked, what date I could no longer work.  Heck, I don’t know.  When I finally completely stopped working, it was because Stuart got a job in California.  I had gone from full-time to a part-time job where I only worked 15 -20 hours a week, and made my own hours.  I also went from being a Custom Picture Frame Shop Manager to merchandising greeting cards.  Because that was all I could do…and it hurt like hell.  I was already having trouble with my hip, and had to quit my framing job because of the Meniere’s.  So when we moved to CA, we decided I’d just pay attention to my health.  Then I was never able to go back to work.  I tried one Christmas to work in a retail store a couple of days a week.  I lasted 3 days and couldn’t stand after that for over a week.  I had surgery shortly after that.  So what date do I put down?  When could I no longer work….what magical date?  I kept trying and trying damn it!  Hell, just last year I worked for 1 week answering the phones for Stuart’s job, but I couldn’t even do that now.

Stuart’s ready to ask a lawyer to handle the whole thing, but that can get expensive can’t it?  I don’t even care about the money.  I just want to have the label.  That sounds kind of sick.  But there are advantages through the ADA and other organizations if I am officially declared disabled.  Plus, I need to accept it.  The money would be helpful. don’t get me wrong, but right now, there are more important reasons I need to have this done.

I have really begun to hate WordPress.

There is a button at the top of my screen, “Congratulations, you win the prize! The chance to take our 5 second survey : )”  so I clicked it….It asked if I would reccommend WordPress to my friends and family, I said 0 – Not on your life…it comes back saying I’m not an authorized user for this Dashboard.  What?  I’m using the Dashboard!  You )%(%*^&$.  I went to the Users tab, and I’m the only authorized user? What do they want?  That’s just strange.

I can’t get any Theme to look like I want.

They want me to PAY to change the size of my Font!  I didn’t realize this before, but now that I’m visually impaired, it makes a difference.  (and it’s killer to read white on black now, I see gray on Black and it’s very hard, I had to change my other blog.)  I feel horrible, some blogs I’ve been reading a long time, now, it’s so hard.  There are some I can still read, but I can’t read their side bars.  I guess that’s OK.  I used to love a black background.  Heck, my Create To Heal blog still has one.  But since the font is so big and a bit yellow I can still read it, but I may have to change it.

I want to say right now!!  IF ANYONE HAS ANY TROUBLE READING MY BLOGS, PLEASE LET ME KNOW.  I WILL GLADLY CHANGE THE COLOR AND (IF I CAN) THE FONT OR FONT SIZE)  I am writing to WordPress today about my concerns about the font sizes.  I do not like that I have to hit Control + to make my screen bigger so I can read my own blog!

I’m not happy with the look of my blog right now.

Not cute enough.

Not Wendy enough.

But I don’t want to change from Word Press, I’m afraid I will lose my followers…and those who are just now finding me through the WEGO Health Activist thingy.

what to do.

WordPress, really wants me to pay for everything.  I can’t do that.

*sad face*

I’ll figure out something.  I’m sure I will, I’ve come up with some kind of cute looks.  We’ll see.

Hope to surprise you with a new look soon!

I’ve been avoiding this…..

On By WendyIn Chronic Illness15 Comments

For some time now we’ve know that I may have a type of high Cerebrospinal Fluid Pressure, where it rises too high then blows out and goes too low.

I mentioned that they caught it in the high level this last time, and we have a name for it.  Idiopathic Intercranial Hypertention (this is a link to a Wikipedia article if you are interested).  I’m going to call it Intercranial Hypertention of IH while I’m talking today…Okay?

image courtesy of http://wn.com/intracranial_pressure

I won’t sugar coat it….I’m scared.

I’ve talked about some of my symptoms.  They don’t know if they are being caused from the IH or from the medication side effects, yes they are that similar.  Can you believe that?  I will be going back in soon for another Lumbar Puncture.

So why haven’t I felt like this before.  Some times I may have for short periods and just thought a Meniere’s attack was coming on, or any number of my problems, but remember, I’d have blow outs.  Literally, my spinal column would start to leak in weak spots and my pressure would fall, often way too low and I would have those symptoms.  If you’ve been following me for long, you know what that’s all about.

This time, not only am I having balance issues, but it’s affecting my vision.  Remember, I’m losing my hearing at a pretty rapid rate.  Now, I may be losing my sight.

I had not read much on this, I thought my pressure would have to be much higher for this to happen, then I read an article on the Intercranial Hypertention Research Foundation site last night that startled me.  The person who wrote it could have been interviewing me.  Here is excerpt from the article about visual symptoms,

“The most common visual symptoms are:

Transient Visual Obscurations (TVOs): These are often described as momentary grey spots, or a dimming or blackout of vision that occur in one or both eyes, especially after a change in position (such as standing up from a seated position). TVOs are the most frequent visual symptom but are temporary; vision generally returns to the affected eye or eyes after the TVO episode, which lasts approximately 30 seconds to a couple of minutes. They may also be accompanied by pulse synchronous tinnitus.

Blurred vision: Blurred vision may be a direct result of papilledema and swelling in the surrounding retina. It can also be the result of a retinal hemorrhage.

Double vision (diplopia): Double vision can be due to sixth nerve palsy.

Decreased contrast sensitivity: Over time, chronic IH may affect the ability to perceive changes in contrast. Some with IH report examples of this decreased ability, such as the grey or faded out appearance of black text against a white background. ”

It does mention that ” in many cases, the surgery successfully relieves optic nerve swelling and improves or restores vision.”   That was very encouraging.  I’m also very hopeful they will get this under control before things get too advanced, but I have not been feeling good for some time now.

We all know acceptance of a chronic illness is a big hunk of the battle.  Once you accept it, you can do so much more to make your life more tolerable.  But how can I accept this when I don’t understand it yet?  When I feel so confused so much of the time?  When I’m told, who knows, you may have to have a shunt.  Oh, that’s great to hear.  A shunt.  More brain surgery to put a tube in my brain to drain fluid to my abdomen do they can control how much CSF I have all the time.  So if I have a shunt, will this interfere with me getting a cochlear implant?

More questions to ask the doctors.  And the new headache specialist hasn’t returned Stuart’s calls.  Not feeling good about that!

So right now, there are so many unknowns.  I had a strange vertigo attack yesterday.  It was a positional attack, but it wasn’t really.  If I got in one position it got much better but it was still there and everything was doubled.  I was freaking out.  In full panic mode.  Sweating, and these little cries coming out of me, saying something is wrong, this isn’t right….stop, please stop….and trying to slow my breathing…but not doing a good job.  Unfortunately, we were downstairs, and Chris witnessed most of it.  I was mortified.  Finally, I calmed myself down, if I can get to the point where I can just chatter, about nothing, just talk and talk…I can let it go and even if the world is moving I’m somewhere else.

Afterward, we came upstairs.  For most of the night I was off.  The walls are wavy, the floor it tilting, I’m living in a Fun House, but I’m the only one who sees it.  For days I’ve been telling Stuart that I feel like something bad is going to happen, someone is going to die.  Truthfully, I thought it was our dog.  She’s 19, she is doing well, but in dog years she’s close to 100.  Last night I broke down and was convinced I was dying.  I told him how sorry I was, that I know I’ve talked about giving up but I promised I hadn’t given up on him that I was still fighting but I was sure I was dying. At first he tried to say no, but then he knew he just needed to talk to me.  I told him what I wanted at my funeral, or rather who I didn’t want there…I want a party instead of a normal funeral where people remember me and have fun, I told him to display a photo of me when I was skinny, not a recent picture.  I wanted a bouncer at the door, and everyone had to give their name, if someone gave their name who was on the NO list, they were to be told, “I’m sorry, you should have visited her when she was alive, you are not needed here now.”  (Yes, I’m telling him all of this with slurred speech and I couldn’t focus well, but I was sure about all of it.)

So he asked, if you were possibly dying what would you like to do before you die?  The only thing I could really think of was to renew our vows.  I told him somewhere near the water….a nice lake, or the beach, or a water fall (I bet that would make me dizzy though).  He was all for it.  He didn’t realize that I wanted to renew our vows so I could point out to him that they were until Death Do Us Part….and I wanted him to carry on without me.

Let me say right now, I DO NOT think I’m dying. (Well, no more than anyone else is.)   But sometimes lately, I feel like I must be.  My brain isn’t working quite right and that is the only thing that makes sense to me, but then again….my brain isn’t working right!!!

I have been in touch with both my psychologist and my psychiatrist….I’m making sure everyone is looking out after me through all of this because I know my brain isn’t working just right.  One shouldn’t see things, or forget things, or not know where they are….it’s kind of freaky.  I’m so grateful Stuart has the type of job he does so he can be with me all the time right now.

So I’m in a holding pattern right now…about everything

Right now, there are no good days.  I may have some decent moments, but no completely good days.  (I even told Dr. Gray that I feel like shit!) – actually Stuart was on the phone with her and she heard me in the background.  I was trying to stop cursing, my therapist said, it’s probably not a good time for that.  People under this much stress tend to feel better if they curse more.  Alright!!!  Stuart can no longer bitch at me for my language….but I am trying to tone it down..I do get a bit out of control….can you believe it?  Me?

Titty Sling Update – I got too tired again trying on bras…and they let Stuart come in and help me, I’m sorry to all of you ladies who have to do it alone!  Finally I begrudgingly picked one.  I didn’t like it but it served the purpose.  We walked out of the dressing room, and I pointed to a bra, and said, I wanted that one, but they were out of my size.  Stuart looks up on the top rack…thank goodness he’s over 6′ tall!!  and found one in my size.  Once again I said, I’m just buying it!  So we did.  And it fits like a dream!  I love it!  But it’s white.  ick.  I can’t wear white with let’s say…..white.  And it was on clearance – $9!!!!  but no more in stock *sad pouty face*.  We will be scouring other stores tomorrow to see if they have any left!

OH…when I was in the store, an employee, ran into my walker with her shopping cart TWICE!  She was picking up clothes people put in the wrong place.  She saw me, looked me in the eye, and bam!  I have been hit!  She said something I could not understand.  The next time, same thing.  I thought….I’m so glad this store will hire the mentally challenged.  (Wow!  a big difference from the $.02 that pissed me the other day huh?)  I admit she did annoy me, but I just let it pass.  The only thing that really bothered me was that she was also the lady who was in charge of the fitting room.  I asked if Stuart could help me.  Yes, but he had to leave his things outside.  (his things were, his sweatshirt, and shopping bags – not store merchandise)  He asked where, she mumbled something and pointed to a shopping cart full of stuff.  Stuart said, “I wonder if I’ll see that stuff again?”   We did, but we had to dig for it down in that shopping cart.  How bizarre.   But I really felt, mentally challenged, not just lazy like the $.02 lady…. I think that made a huge difference.

So…I’m scared, that’s normal right?  I’m a bit off, somehow I have to hope they can make it better….somehow.

Going to start talking to doctors about disability, afraid about that too.  If my doctors said they don’t think I’m disabled I think I’d fire them.  Oh, I’d be wayyyyy too angry to speak.  I know I’d have a break down right there.  Yep!  So I have an email to my therapist about how to talk to them about this before I actually do it.  I’m way too touchy right now.

The new baby should be here no later than Thursday.  (they are inducing if she doesn’t go into labor before then).  I’ve barely seen the mama.  She has been in the guest room with the door closed in the dark for most of the time.  Chris has been around.  It’s been kind of surreal.  Especially with all the new stuff going on with me, and she was diagnosed with this same thing with the pregnancy, but she seems to just have the headaches.  I deal with the headaches very well, I’ve been having migraines since I was 11.  Poor Penelope has never been sick.  This past 6 weeks has been hell on her I think.  I hope things are easier after Rowen is born.

Forgive the look of the blog….I’m working on it.  I’m still not there yet, but I’m playing.  It’s hard to read a lot because things are blurry so forgive me if I don’t make it to your blog a lot, or if I have many misspellings.  But the graphic stuff is kind of fun (if they would just tell me what size it needs to be)…I’m playing…It will turn into something we all love I hope!!

hugs to everyone who needs one today!