Health Haiku – #HAWMC Day 6

“Quick Send Money Now!”

Yes, I have brain disorder,

But, I’m not Stupid!

image from seemehearme.biz

Cannot Hear the Voice

Startled by the man behind

He assumes I’m rude

image from http://juick.com/ellma/1346507

Living in Fun House

Is a scary place to live

Not knowing what’s real

The previous Haiku’s all represent health issues I deal with.  The first, a little joke about having a brain disorder, Intracranial Hypertension.  The second, a challenge about losing my hearing late in life.  Of course, anyone who is hearing impaired may have the same struggle, I do not know.  And lastly. this haiku talks a bit about living with both Intracranial Hypertension, and Meniere’s. Each cause me to have vertigo and other visual disturbances.

I hope you have enjoyed.

From the Heart ….#HAWMC Day 5

This is not from a prompt it’s from my heart.

This is on the ugly side.  Probably a post with too much information for some.  It’s very emotional, and I’m not exactly sure where it will all end…

"Turmoil" computer graphic
wendy holcombe - 2012

I’ve noticed a lot since I have been diagnosed with Intracranial Hypertension that my emotions are a bit out of whack, and I haven’t had the best filter on my mouth.  I cry a lot of the time, and try to be as strong as possible.  I feel alone and keep reaching out trying to ask for help, but just keep alienating people.

I continue to help others if they need to talk, if they need a shoulder…but my shoulders are just so soggy lately.  There are days I feel I have it all under control, my headaches are better, my vision is better, I’m getting around a bit better, so why am I a mess?  Why can’t I relate to people like I normally do?

I asked the doctor, is it the condition, the medication side effects, one medication mixing with other medication, do we need to adjust my bipolar medication???  I was told, “Yes. Maybe. It’s complicated.”  then I was told, “I’m sorry your condition is not easily fixed.”

Well that’s all well and good, but I’m losing everyone around me.  I feel like I’m going insane.  I’m so alone, and scared.  It’s getting to the point that the only one who will put up with me is my husband.  At least I think I do remember to tell him how much I love and appreciate him.

Then the terrors start.  I’m terrified of being alone, not all the time, just some of the time.  It’s more than that, I’m afraid of being without my husband. (again, not all the time, sometimes I feel very capable, then other times…Panic!!!)  What if something happens and he’s not here and I have vertigo and can’t stand up, and can’t stop throwing up, and ……  panic, panic….what if I’m upstairs and he’s gone and I can’t go downstairs and my blood sugar is too low and I need to eat, but can’t get down the stairs safely….panic, panic….what if….I Fall??…..what if…..OH remember to BREATHE!  There are just so many things he does for me, he has no idea how much easier he makes my life.  Often just by being here so I know if I need him, he’s here.

So, what do we do first…how do we sort this out?  Already 2 medication changes.  Soon another.  This week I see my Psychiatrist to see if there is anything we need to change there.  Is there any medication that is working against anything.  Should we add something to help ease some of this?  Will it help?

Does anyone really have any idea?

I do have bipolar I disorder, I know what it feels to not be myself.  I know I’m not going through a depressive or manic swing, but I know I’m not myself, and that tells me I need to back away.  Unfortunately, I wasn’t listening to that little voice when it first started screaming at me a few weeks ago.

Will I have any friends left at the end of this.  I admit I didn’t have many at the beginning.  Having a chronic illness for this long is not good for keeping good relationships.  No one’s fault really, it’s just very hard.  But I’d like to stop alienating the few people I do have supporting me.

Right now, I plan to finish this months writing challenge then take a Hiatus from my blog for a while and try to get this straightened out.  I don’t feel like I’m myself lately, and I don’t want to be putting words out there that aren’t really want I want to say.

I hope those of you who have been on the confusing end of my emotions recently can find a way to understand and forgive.  After the 1st of May, I plan to just take a break, I hope to see you soon.

Inspiration Quotation “I Believe In You.” – HAWMC Day 2

graphic by w. holcombe 2012

I hear many quotes that I get inspiration from.  The one I’m continually inspired from is one I heard over and over again from my mother, “I Believe In You.”  After she died, it was a long time before I heard those words again.  Now, I’m so grateful to once again hear the same words over and over from my husband.

Those 4 words resonate through my very soul.

“I Believe In You”

Because of these words,

I was the first person in my family to graduate college.

I had the courage to seek help for a mental illness (Bipolar Disorder) that was tearing me apart.

I had the courage to become an artist and show my artwork in a gallery and have a one person show.

I have had the courage to face my chronic illnesses as they have been diagnosed, including Meniere’s disease a vestibular disorder with sudden vertigo and  hearing loss, and most recently Intracranial Hypertension a disorder of the brain causing high cerebrospinal fluid.  (please know these are very simple explanations of each of these disorders)

I have the courage to face each day as it comes, make the most of each good moment, and realize that at the end of my days I will look back and all these moments will have added up to be a pretty good life.

“I Believe In You.”

Everyone faces their own battles, we all need someone to believe in us.

Who do you believe in?

Have you told them?

Make sure to let them know.

When you are facing a hardship, fighting a battle in your life, it’s easy to give up when you don’t think anyone believes in you.  When you have someone pulling for you, someone who believes in you, it’s much harder to give up.  Courage comes from belief.  Belief in yourself, for some belief in a higher being,  but sometimes, we need a little help from someone else.  We need to feel a human touch, someone who can reach out and say…”I Believe In You.”

My wish…Go out today, and tell someone special you believe in them!

A Rat in a Pink Inflatable Cage – and remember Next month will be different.

I had to try to do a quick drawing of this rat in the inflatable cage.
It's just a rough oil pastel. But it got me to drawing!
and hopefully, gives you a smile.
by wendy holcombe 2012 copywrite

The very first thought that came to my mind when I woke this morning after 4 hours and some odd minutes of sleep was,  “I feel like a Rat in a Pink Inflatable Cage.”

The next thought I had was, “Where did that come from?”  Then I realized, that is exactly how I feel.

I’m the clinical rat being tested on and pocked and prodded, trying to find the answers.  I’m living with that, I accepted it, authorized it.  I understand doctor’s don’t know everything, and not every person reacts to everything the same way.  But why the Pink Inflatable Cage?  That was a new sensation, well kind of, it does happen now and then.  I had the feeling I was just kind of in a big bouncy house.  Everywhere I moved things moved just a bit with me.  But the vision it was so perfect.  I had to share even if I can’t quite express it in the perfect words..

Now for why I had such a short amount of sleep.  I was put on a dose of steroids yesterday to help knock out my migraines.  I started them a bit too late in the day, so my last dose was a bit too late.  I’ve taken steroids before, but I’ve never had the symptoms so many warn you of.  The increased appetite, the restlessness, the bouncing off the walls!!!  Well I did find out I don’t quite jump off the walls quite as much if I eat with the dose, but I have to eat a good amount.  Whew!  But I learned this a bit too late.  I got to sleep around 6am, around 10am, I awoke to start the next days doses a bit earlier.  I really need to make sure I finish my last dose a while before sleep time.  So today I’ll be finished about 9pm.  Yay!  Hopefully, I’ll get a whole nights sleep.  Oh, I did happen to get a 2 hour nap.  So I had a little more sleep today.

*I wanted to remind everyone that I’m participating in The Health Activist Writer’s Month Challenge hosted by WEGO Health. Starting on April 1st.  So my posts may seem a bit different.  There will be some of my normal talk in there, but I’m going to follow some of their prompts to make it something different.  I’ve already written some of the posts, and I think you will find some of them enjoyable!  I’ve enjoyed some of them.  A couple I did enjoy, but I know won’t be the style of many of my readers.  I know you are thinking….”She’s already started?”  Yes!  I wanted to make sure if I had a day that I simply couldn’t post, there would be a post ready to go out.  I also wanted to make sure if there was a day I felt good and wanted to and have a happy day, I didn’t want to be concerned that I might not get a post in.  So yes, I’ve started.  No I don’t have the whole month finished!  But the first week is ready to go, and a few more are in the works.  Aren’t you proud of me???

Remember you too can join me, if you are brave enough…or crazy enough, I’m not sure which. 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.

I hope you enjoy the month, if you don’t please let me know and I won’t participate again.  If you want to hear more of my normal rants, let me know, remember these prompts are just suggestions, I can always post my normal way.  This blog has always been a way for me to express my feelings and to help others along the way.  I never want to stray from that purpose.  Please let me know what you think.  And keep in mind, this is just for a month, so let’s play if we can stand it, we might make some new friends, and we might learn a bit.

But I’m open- let me know what you think.

I’ll probably put up a poll at the end of the month to see what everyone thought.  : )

 

 

Taking Control…even a little bit.

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….

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…

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?

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

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.

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.  : )

Under Pressure

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!