Tag: disequilibrium

Migraines, Vertigo, Disequilibrium, Pain – mix and repeat often

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain12 Comments

Where have I been you ask?  Or perhaps you haven’t noticed (don’t tell me, I want to think I was missed) I haven’t been commenting as much on other blogs, or chatting away on mine (I know for a while I’ve been a little silent here so you probably didn’t notice), I haven’t even been able to answer emails in a timely manner.  I logged on today and I had over 230+ emails in my inbox.  Normally there are about 30…so how many days has it been??

I’ve been much sicker, if that’s the word to use, lately.  I’m not really sick, it’s my chronic stuff, plus a little oops added in. First I’ll tell about my oops.

I know in my last post 30 things you may not know….. I mentioned how hard it is for me to wash my hair.  It’s normally easier in the bathtub than the shower (I’ve fallen too many times in the shower), but I’ve decided that my bathtub is evil.  I’ve had heart palpitations in the tub and nearly passed out, I’ve slipped a few times trying to get out, once I smacked my head against the wall.  My latest fight with the tub?  I pulled the tendons in my left ankle, and knocked everything out of whack on that side from my foot to my lower back, while I was lying in the tub.  Yes, I said, LYING IN THE TUB!  Only me right?  Ok, it was a little more than just lying still.  I had scooted down in the tub to rinse my hair, then I pushed with my feet to scoot up – my left foot slipped and went in a direction it shouldn’t have.  But I must say, it really didn’t hurt. When I got out of the tub I could stand fine as long as I didn’t go up on my toes.  So I’m thinking, no big deal.  Then Stuart looked at my ankle and said, “Oh My!”.   My ankle was very swollen!!  My lower back hurt, but my ankle really didn’t.  If you touched the swollen area it hurt, but not much.  This happened last Friday night.  On Wednesday the swelling was down and I had a massage, she helped the leg and back, but last night my ankle was swollen again.   (not that I’ve been on it, I had vertigo all day yesterday so I was in the bed.)  So now you know.  I am afraid of my tub and shower….makes it pretty hard to keep up personal hygiene, but I manage….thanks to that darling man of mine.

What else had been causing me frustration and just plan fear lately?  I was supposed to have the Botox shots for my migraines on the 18th, my doctor was sick and they had to reschedule….they wanted to make the appointment in November!  We are leaving for Tucson, AZ the last week on October, we won’t be here in November.  So they scheduled it for October 20th…I cried.  I had the worst time with migraines this past month.  Right before my period started the pain started…they gave me special medication for that time of the month, it didn’t work.  I had 15 days out of 20 were spent in a dark room, often without any hearing device on because the light and sound would make me throw up.  Throw in some vertigo, and we have a great party going on.  Luckily, the appointment has just been changed to October 3rd.  This should be during my period, so it will be a real test.  Big problem now?  If it works I need to have another shot regimen in 3 months, we won’t be here.  I’m not sure I can find a neurologist in Tucson who would be willing to see me just once to give me Botox injections.  Actually, I doubt I will be able to, so it will be more like 5 months between injections.

Recently I’ve been having more vertigo, and constant disequilibrium.  Frankly, it scares me.  I’m pretty sure some of this is Cerebrospinal Fluid Pressure.  We changed my medication that controls the high pressure to a times released form instead of the kind I have to take numerous times a day (I kept missing one).  Since I’ve been on this new version of this medication I’ve been having symptoms like I did when my pressure was too low.  I started back on the regular form of the medication yesterday, I hope this really is what’s wrong.  Because the vertigo is scary.  I’m proud of myself about how much better I’m dealing with it.  I don’t panic as much, I’m sure I would if it was a severe attack.  My biggest fear I have is that when a severe attack hits it will never end.   I’ll give you an example of my days…Yesterday I woke up to the word spinning, slowly, but still spinning…this went on all day.  Luckily, I was able to sleep through some of it.  Then when it actually got to be bedtime, I couldn’t sleep.  So many things going through my head.  I kept thinking, something doesn’t add up….but I’m not sure what…at least I finished Uncle Tom’s Cabin…and still laid awake until 5am.  Today, I’m not spinning, but I can’t walk straight.  I can’t move my head at a normal speed or I will fall down from the disequilibrium.  In the past 48 hours, I’ve been to the bathroom once unaided.

OK…I know this is another venting post.  But I’m scared.  What if the change in medication doesn’t work?  Then why is this happening?  We’ll figure it out, or I’ll learn to live with it!  Right?

The other night I was talking to Stuart and told him that sometimes I envy people who don’t have to feel like I do.  Of course, he said that’s natural, part of self-preservation and all that….  I then told him, I would gladly be the only person in the world who had to feel this way if no one else ever did.  And I mean it.  The thought that others go through this is heart breaking to me.

The Lorax
photo from smh.com.au

I do have some good news about my hearing!  (unfortunately I had to cancel the last 3 appointments I’ve had with my audiologist because I was too ill to go, so I can’t tell you what she has to say, but I have some Wow! news.)  Stuart got The Lorax DVD from Netflix and we curled up in bed and watched it on the computer.   I used the direct link cable and linked the computer sound up to my processor.  I didn’t expect to hear any better than I hear the TV, I thought I’d mostly read the movie, as usual (thank goodness for closed captioning!), but this was different!  I heard the movie!!  I heard the characters the way they were supposed to sound!  I really heard it all, just right!  Isn’t that amazing?  That gives me hope that one day my CI will give me sounds that are normal.  Right now, I hear better with it than my hearing aid, but sounds are a bit off, however, I understand things more.  It’s coming along!  And The Lorax is my new best friend!

 

It’s been a very rough week.

On By WendyIn Chronic Illness, Meniere's Disease10 Comments

It has been a very hard week.  I won’t go into details as it concerns people in my family, and I won’t talk about my family on my blog again.  I’ve been contemplating all week simply closing my blog and disappearing, or making it private.  But that’s stress talking, I’ve found so much support here and I want to think I’ve given a lot of support and information here too.  Plus I need a place to go and just get it out.  Even when I can’t talk about all of it.  Let’s just say, it’s settled for now….maybe.

Photo by Vincent Morrison – Manipulated by Wendy Holcombe
If photos could show feelings…

On the 15th, I got hit with a huge stessor!   I was under extreme stress and confusion for hours.  Finally, things were calming down.  I was relaxing in bed, tying to breathe in the ill feelings I felt towards me, and breathe out happiness and goodness to all.  I decided to have a little pineapple Greek yogurt, with a banana and nuts for desert.  It is delicious.  Well, what I got to eat of it.  Right when Stuart brought me my decadence, I had that Wonky feeling in my head…so I took my pills and hoped it was just a blip on the radar.  (Yes I know, how could I think of eating if I was feeling Wonky, but I’ve been having a lot of Wonky spells that just turn into nothing lately.) Unfortunately, before I was even finished with my treat the world was in full spin!  This was one of the longest attacks I’ve ever had….and one of the strangest.  It was Meniere’s, not vertigo caused by a migraine.  I went through all the stages…and all the grossness. (some how while throwing up I bashed my elbow on something, and it has had a knot on it since then.  It’s getting better, but I was afraid I had broken it the next day.)  Again, all the throwing up and losing all bodily functions.  Not being able to lift my head, except to put it in a bucket.  (I even threw up on our brand new carpet….not much, thank goodness, but Yuck!)

So the vertigo kept changing speeds, it would be wild, so fast I couldn’t recognize the things spinning by, then it would slow down to the point I thought it was going to stop any second….I even dozed off a few times, just to be jerked awake by vicious spinning again!  This went on for over 16 hours.  Luckily I didn’t throw up the whole time, I did keep heaving though.  Even before I threw up the first time, I would have the worst muscle spasms and just heave, like I had dry heaves, but nothing had started yet.  This often happens to me when I have an attack, at he beginning at least, I can’t figure out why.  Why does it have to hurt so bad??

Even after the spinning stopped for the next day I kept feeling like they would start back up, I couldn’t walk straight.  It was a very rough 2 days.

On Friday I had an appointment with my headache pain specialist (neurologist).  I was supposed to get Botox shots for my migraines.  Many people have had good results from this procedure.  I was a bit nervous, they do 31 shots in your head and neck/shoulder area.  Alas, I did not get it done.  Once again our insurance did not send a pre-approval, they didn’t deny it, but they didn’t approve it either.  Just like with the Cochlear Implant.  What a pain in the butt that was.  Luckily, they did pay for most of it.  They didn’t cover a procedure that cost about $500, testing the device after they hooked it up to me to make sure everything worked right.  Can you believe?  What if they hadn’t tested it, and later found out part of it wasn’t working?  I’d have to go through another surgery to replace it.  How bizarre.  Stuart called the insurance company on Monday, I have been approved for the procedure, it just seems no one knew it.  So now I have to get another appointment with this doctor…..hope it’s soon.

Sunday I had another scare. but not with vertigo.  Really I wasn’t scared, it’s happened before, and I’ve been checked out, still it’s uncomfortable and yeah, it’s a bit scary.  I had heart palpitations.  I figured out why, but it lasted a long time.  I wasn’t as careful Sunday about what I ate or drank.  I do not drink caffeine very often, and if I do, it’s just a little bit.  I also don’t eat much sugar.  Well…I wasn’t so bright on Sunday.  We were out and I had Mandarin Orange Green Tea, not thinking that Green Tea has caffeine.  That would have been fine, but later in the day we were at a store and I started feeling funny, and very thirsty, we couldn’t find anything that didn’t have either caffeine or sugar.  I decided to take the caffeine since I wasn’t sure if the sugared drinks had fructose.  I only drank about half of the soda.  After dinner I decided to have some ice cream we bought, it is Fat Free, and I was thinking Sugar Free too.  Not bright.  I only had about half a cup, but it was enough.  I started feeling strange.  I thought my blood sugar had dropped, so I ate some protein. But it didn’t work.  I was sitting on the couch watching TV with my hubby and I felt like my heart was going to beat out of my chest.  The doctor told me to massage one side of my neck, and it should help, she also said to put something cold on my wrist.  Well I did both, for a long time.  This lasted longer than I was comfortable with.  Finally, things slowed down….and all was alright.

I hate how much I have to watch everything I put in my mouth.  It would be difficult enough if that was all I had to deal with, but dealing with all my food issues and my other health issues is hard!  I’m dealing with it, and I’m lucky I can eat as much as I can…right?  I just need to be more diligent.

 

Well that’s all for this past week.

I promise my next post will be on a happier note.

Wonky, Sloshy Head

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease11 Comments
Image from deviantArt. “loose” by pehdtsckjmba

If you have Meniere’s, I know you know what this title means.  For the past few days, (actually I think it’s only been two, but it feels like a week!), I’ve had the wonky, slosh head feeling.  I dare not move my head too fast or I’ll fall down, really, I did this yesterday!  I haven’t felt like this in a few months, I wonder what has started it now?

Could it be….

  1. Hormonal Changes?  It’s that week, but it hasn’t started yet.
  2. Missing one of my meds for a day and a half?  (that’s 3 doses)  This is what Stuart thinks it is, but I’m wondering if part of that isn’t just him feeling guilty because he forgot to go and pick it up.   (it was Buspar for anxiety and panic attacks – these started in January, I haven’t felt more anxious the past couple of days, just wonky!)
  3. The weather?  We have had some big weather changes almost every day.  We’ll have beautiful clear skies, with a lot of heat…and then we’ll have a lot of rain all of a sudden!  But this has been happening for weeks, so why bother me now?  (it has been increasing my headaches, but I haven’t noticed the disequilibrium before.)
  4. It’s just that time?  We all know Meniere’s is NOT predictable.  So maybe this is just the monster saying hello.

I’m still so grateful that I haven’t felt like this in a while, actually I’m not sure the last time.  Not much since the surgery in December.  I have to say, I’m thrilled with the results of that surgery.  I have only had one mini vertigo attack caused by Meniere’s since my recovery.  Yay!  The Endolymphatic Sac Surgery was a big success for me.

(I’m still waiting on our insurance company to send the right type of letter to Duke, so I can get my Cochlear Implant surgery scheduled.  They have been so evasive about this, how hard is it to say that this is covered under our plan as of this date with an in-network doctor.  As long as our plan doesn’t change everything should be the same.  NO, they send a letter saying they can’t give a predetermination, because the plan may be canceled or changed, the doctor may not be in-network…ect.   They never even say if it’s covered by our plan at the present time!  What a pain!  So I won’t be getting my CI activated before my birthday….I’m so disappointed.)

I promise to write a post about this whole journey, and show which processors I chose, as soon as I feel a bit less wonky.

 

Daily Schedule #HAWMC Day 25

On By WendyIn Chronic Illness2 Comments

Today I’m using a prompt from the Extra prompts they sent us.

Daily Schedule. Write a list of your daily routine from the moment you wake up until the moment you go to bed. Be honest!

photo courtesy of istockphoto.com

Honestly, I don’t have a set schedule for any day. My days are ruled by my conditions. If I’m having a day filled with vertigo, or migraines I spend the day in bed. If my hearing is way down, I spend the day as alone as possible. I often have doctor’s appointments.  My days change from one to the next, a lot.  If I’m feeling a bit better, I do more….

Here’s a recent weekend day.

After a restless nights sleep I awake around 9am with a blinding headache. I’m seeing double, with shadow spots on the walls. I take the medication that should lower my CSF pressure(cerebrospinal fluid pressure), and wait to see if it will relieve the pain. My husband brings me some breakfast in bed, along with the rest of my morning medications. The headache has not eased. Finally, I decide I should take some migraine and pain medication also. I try to sleep some more, this time sitting up, hoping my CSF pressure will lessen.

Noon – The headache is still there but much better, I’m hungry, but not sure I’m steady enough to go down the stairs. My husband brings me lunch. I decide to check my email, and do some things on the computer. Focusing up close is much easier than focusing at a distance.

2pm – Time for my next CSF pressure pill. I’m feeling much better, and steadier. We decide to take advantage of this time feeling a bit better. I want to go to the local Co-Op to pick up vegetables and meat for dinners for the week. We had a good trip to the store, and a nice ride home.

4pm – Home. I’m tired just from the little bit of shopping we did, and the ride. I help put the groceries away, and start to plan dinner. I turn and feel the world move. Oh no.

5pm – 9:30pm I have vertigo. This vertigo is caused by the Intracranial Hypertension, not the Meniere’s. I can tell because if I keep my head in one position and concentrate on something still close to me I will stop spinning, but if I move, the vertigo returns. If I was having a vertigo attack from Meniere’s I would not be able to stop it, no matter what.

9:30pm I am completely exhausted from the vertigo attack. Finally, I can move. I eat a little something, and head to bed….with a lot of help from my husband.  Take my nightly medications, and try to sleep.

This is a somewhat normal day. I don’t always have vertigo. I do normally wake up with a blinding headache that often takes hours to get under control. And we always try to take advantage of any time that I’m feeling well enough to do something. (I know going grocery shopping doesn’t sound exciting to most, but I love to cook, so shopping for food is exciting to me.)

Health Haiku – #HAWMC Day 6

On By WendyIn Chronic Illness5 Comments

“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.

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.

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 said it before, and I’ll probably say it again…what a difference a day can make.

On By WendyIn Chronic Illness6 Comments

Today was a breath-taking beautiful day.  The sun was shining, it was in the 80’s F….yes the 80’s on the first day of March!  A good friend of mine just got married!  I’m so very thrilled for her, you may remember me passing along the candle lighter award to her….Congratulations Fiona and Jeremy…I adore you!

I slept longer than I have in a long time, I woke up with a minimal headache (my normal every day type of headache).  I was still seeing double but it didn’t seem to last as long.  I lounged in bed for a while with the window open and enjoyed my breakfast.  Then I read a bit on the computer and decided to get dressed for the day.  We were refinancing out house to a better rate, and we had to sign all the papers at the lawyer’s today, so I had places to go.  I decided to start getting ready very early.  About 2 1/2 hours early.  Just in case.  I wanted to do a little then rest, do a little more, rest…eat lunch….rest….you get the idea.

You would be so proud of me…I know I was.  Darn I should have gotten a picture!!  I French braided my hair.  I’ve never been able to do that!  It has always turned out lopsided or with straggling hairs, but usually it is a “Dutch” braid.  A French braid lies flat against your head the Dutch braid is kind of backward, it looks like a braid stuck to your head….it sticks out.  It’s kind of neat, but not what I wanted.  And…imagine this, I did it on the FIRST try!!

I tried on a few things to wear, but the one’s that I don’t look like a blimp in were too hot, I admit I was getting sad and upset.  Then I thought of a white tank top with an orange cap sleeved sweater over it that has one button around the abdomen that makes me look much thinner.  I actually put on makeup!!  I got ready, got dressed, and got down stairs….all by myself.  I was beaming with pride.

Stuart and I decided if I felt well enough after our visit to the lawyer we would have a date night and go to Fishmonger’s.   I LOVE crab legs.  I know he just got them for me on Valentine’s day…but it was so nice to have a date night with my hubby.  In a restaurant right across the street from where we met.

Fishmonger’s is one of those little seafood restaurants that make you feel like you are on the Carolina Coast.

This is the type of tables they have there.

I am having a very hard time with my hearing.  Stuart needs to step up his ASL practice.  On average I have to ask someone to repeat themselves at least 3 times, and after that I just drop it.  It’s too embarrassing.  And it’s usually just some small talk.  I can’t remember if I’ve mentioned it here, and I’m too tired to look back and finish this so I’ll give you the short version.  Saw Audiologist on Monday.  She thinks I’ll need a cochlear implant soon but the requirements change with insurance companies.  We have new insurance starting this months.  (they are going to love this) The first question Stuart is going to call and ask is what

their criteria is for covering a cochlear implant? The surgery cost between $30,000 and $100,000 and our out-of-pocket will be $150 Yay!!!

So I may have told you…forgive me.

So while we were out, it came time for my medication. All of a sudden I had a sharp pain in my head, I asked what time it was, exactly time for my medication! I asked if we happened to remember….ooops, nope. So I was 2 hours late taking it. By the time I got home, I was not able to walk unaided, I was slurring my words, I had to really concentrate to understand things…..it’s kind of funny, in a way I feel like I’ve taken some drug…like a downer or something. But it’s all being caused because I missed my medication. Ahhhh!

Right now I’m running a fever again. Every night, only at night. Strange huh? I take some Tylenol it goes away.

I still have a lot fo figure out with all of this, and it will take some time. It is apparent that I’m getting better with the side effects and I’ll probably get even better when I get some potassium (Diamox is known to deplete potassium.) I have been trying to eat a banana a day, but it’s hard when that’s the cap on the amount of fruit I can eat in one day. So we went to buy some and the store was out. How rude!

I’ve been watching these cooking shows and now I’m just dying to cook. But I need to be more steady on my feet for that. Perhaps I see some slow cooker meals in the future. (much less dangerous, I can just instruct Stuart.) I bought some herbs recently, and got a free ounce of Saffron….oh….what will I do with this delectable spice?

Also, if you have never heard of or tried Pot Herb – it is a mixture of Chives, Chervil, Parsley, Thyme, Marjoram, and Bay leaves. This was delectable in Chicken Soup..and just on chicken….I can imagine so many things to do with this blend…why have I never heard of this french blend of spices before?

So…

What a difference a day can make. Do I feel this much better from all the well wishes? The joyous feelings I have for my friend? The fact that the Topamax was uped? The beautiful weather (you know I got to take the top off!!), or have I once again, simply decided enough. I can’t stand to live with you like that! Get up! Pick yourself up…even if you need help, and find something that satisfies you. even something small…and build it up again.

That’s why I say those silly expectations I had for this life…they must be fluid now, and change as I do.

Thank you all for believing in me.

 

 

Do you ever feel like just giving up?

On By WendyIn Chronic Illness13 Comments

I know I’ve talked about this topic before.  We all know I’m not going to kill myself.  But I find myself many times a day thinking….no wishing….that this would just end.  I’m simply so very tired.  I hear myself saying it all the time….I’m so tired.  I didn’t know I was fighting so hard before, but then when everything was drained from me, and I was left cold and alone with just me and my illness, I realized I had been fighting….and now I was losing.

I don’t want to die, and frankly if I did, I’m way to scared to do it myself!  The thought of the pain, the morbidity, the mess, who would find me, and my poor, poor Stuart.  Oh no, I couldn’t do that.

But I do want it to end.  Yet, I know the best I can hope for is that it will get a bit better.  It will never end…until I do.  And that’s not what I want…Really it isn’t.   This  past month has been a complete terror to me. It has worn me down, beat me, and made me into a person I often don’t know and don’t really like any more.  I never thought that my diseases might kill me until this past month.  The pain, the sickness, I got so very, very tired…I just could not see going on.  I could not understand how anyone could get this sick and not be dying.

I don’t believe I’ve explained all the details of my symptoms of those 25 days, I just gave the high-lights.  You all know about the migraines that varied in intensity on a scale of 0-10 (see my photo scale above) between a 6 and a 10 EVERY  DAY.  I had constant disequilibrium, and intermittent vertigo EVERY DAY.  I also started to have new symptoms.  For one the vertigo was not like the vertigo I get with Meniere’s (thank goodness).  Usually it was positional.  If I was lucky I could find a sweet spot and find a place where if I were very still the vertigo would stop or at least slow down so slow that I could handle it, but often I was stuck in that  position for hours.  I have also been having symptoms with my eyes.  Double vision with my left eye (always when I first wake up and when I’m very tired).  I see shimmers or movements out of the corner of my eyes.  I often think someone has walked by, but I’m alone., and the last one  I was seeing shadows and lights that didn’t match up with the lighting in the room.  I felt like a ghost was following me.

Now, I’m on the new medication, Diamox!  Things are getting better…yes on some points.  But the Side Effects are not fun.

Please know I have talked with my doctor about all of the following side-effects, she said most will subside, and if certain ones get worse to call her immediately.   With that said, these symptoms are driving me crazy.

  • tingling in the extremities.
  • drowsiness
  • excessive thirst
  • excessive urination
  • fever (this one we are watching, right now it’s low grade)
  • confusion
  • loss of appetite
  • and all of those that I’m already having….you know….things like….
  • dizziness,
  • nausea – vomiting
  • this one I just love…Headache!  (I know that’s incase that get it too low, but dang!)
  • muscle cramps
  • more bruising….well, let’s see doc, I fell down in the bathroom night before last because I was so confused from this drug, so I’ve got a lot more bruising, does that count.

Oh, my goodness, I do sound like a sourpuss don’t I?   But sometimes don’t you just feel like the cure is almost as bad as the illness.

And can you tell me why…all you very wise people out there…why is it bothering me so very much that I can’t get out and go anywhere or do anything that I want when I want?  I’ve barely driven in 3 years, but NOW I’m pissed because I can’t go somewhere when I want, and I’ll probably get sick before we get there and will have to come straignt home.  But oh…it just bites my butt.

And I’m very grateful that Chris and Penelope have been here, he’s been wonderful at cooking dinner, but even though I don’t feel like cooking..I’m beginning to feel funny about him being in my kitchen all the time.  I think I’m afraid he’s a better cook than I am and I’m jealous.  But I’m also jealous because, I want to be in my kitchen making new things, creating new dishes with the new spices I just bought.  Oh…so sad.  I miss my kitchen.

Please forgive this, but I’m having a hard time with Penelope’s complications.  They have found out she has pregnancy induced Intercranial Hypertention…Yeah, High CSF!  What are the odds.  So I have to hear all about it.  But in 2 weeks when the baby is due, her’s will most likely be gone.  Very rarely does it not go away when the baby is born.  So I think I’m a bit jealous of that.  She gets cured and gets a baby at the same time.

My lord, I’m pitiful.  I’m jealous over the stupidest stuff.  But really I’m very glad they could stay here and be comfortable here.  I’ve baredly seen them.  They seem to be doing fine.  Penelope stays lying in a dark room a lot.  I find sitting up much more beneficial to me when I have a high CSF headache, but to each his own I guess.  From what she’s told me about the guys who’ve given her LP’s I have not been impressed.

We dropped by Target on the way home today and I bought something that cost $1.07, I gave the woman $!.12.  She just hit the total button and put in the money and then had no idea how much I gave her or how much she should give me back.  You could see this complete blank look on her face as she looked at the receipt.  I said, “the change should be 5 cents, I gave you a dime and 2 pennies.”  No you just gave me a dime….oh, I was already ticked off that I had to beg to drop by Target on the way home, or normally I would have said, why don’t you just keep the change.  But no, not today.  “NO, I gave you 12 CENTS, you owe me 5 CENTS, and I don’t want pennies.)  She slammed the 3 pennies she tried to give me in the drawer and gave me my nickle.  and I didn’t feel bad about it at all , until just now.  And still I don’t really.  People do not take pride in their jobes any longer.  I used to cashier.  I was never more than 5 cents off….over years and years at different places.   People need to take pride, no you may not be getting more than minimum wage, but neither was I.  However, I still did the best job I could.  Is that so wrong?   I had a job managaging an art gallery, and worked part time at a little store making minimum wage, I worked just as hard at both.  When you are interviewed and you are asked if you are willing and would like to do this job and you say yes….then you do it!

So, this post has gone from me wanting to give up….I’ll talk more about that later.  I’m not giving up…but I am changing those expectations!!

To having a good work ethic, and I haven’t worked in 8 years.

Ironic huh?

I Want It Now!…but I’m still Stinky…

On By WendyIn Chronic Illness12 Comments

I Hate it when I can’t do something for myself!!

I HATE it when I want something…like food…and I’m brushed off…oh I’ll get it in a little bit.  Then, he offers,  “how about a (insert something tasteless that I’ve had every day for a week here)?”  “NO!  I’d like some REAL FOOD.” (sometimes I’ll even suggest something…”ummm, that’s so hard, and I’m tired.”  Damn…the I’m Tired Card.  That makes me feel guilty EVERY TIME.

But today,  something tasty was discussed, pizza, or Chinese….Chris decides he’s going to make Chicken soup….hummmm…I – do – not -want –  Chicken soup.  I’ve had that a couple of times this week….  “Oh it’s just to make sure the chicken won’t go bad, we will be getting something else…something good.”  “OK.”, I said dubiously.  “What do you want?”  I said to ask Penelope, I’m good with either the Chinese or pizza….secretly I really wanted the rolls from Pei Wei…but pizza is good too. (Really, I didn’t want to be difficult.)

He comes back….much later…how about soup tonight and we do the other tomorrow.  Fine. {grumble, grumble}  (Now he remembers this whole scenario much differently than I do….but we know I’m right.  He swears I never said I didn’t want soup tonight….uumph!)

I got all flustered with him…I’m hungry…now, dangit…and I don’t remember what happened next or why but I told him to please leave.  I did some other stuff on the computer and…an hour later…I finally called out for him…”OK it has been 2 hours since I said I was hungry is there a reason I’m not eating?”

I Want It NOW! (image by horrificbeauty - Veruca Salt - click to link to artist site)

(yes, you can see the red flames coming out of my eyes at this point….I think you may have been able to see horns and a tail.)  I get sicker and dizzier when I’m hungry…and I’m already pissed that I have to ask for food like a puppy!

I hear…”the soup isn’t quite ready yet”…”Don’t care, it’s been 2 hours…I want something to eat NOW!” “I can find you something.” But he just sat there looking at me… (I actually shooed him away like, well, be off with you fetch me some food damn it! Why are you still here? …I vaguely remember him saying something about being a slave boy, but I was way past hearing reality at this point.  Really?  I did this?  Why does this man put up with me?)

He brought me grapes.  I almost threw them at him….but I took a deep breath and ate the 6 grapes I’m allowed to eat in a day…and waited.  then he brought up some chicken with some mayo/mustard type dressing on it and called it chicken salad….I looked and didn’t comment on what he brought only that it was only about 3 bite fulls.  “But the soup will be ready in 15 mins!”  I thought…that better be some damn good soup!

Luckily it was.  Oh, yes, it was some of the best Chicken Noodle Soup I’ve ever eaten.

Was it what I wanted tonight?  No.  Was it satisfying…mostly.  Would anything else have been any more satisfying?  Sadly..I doubt it.

Then came the humbling, groveling, feeling extremely guilty time….Yes by ME!

Sometimes, it just gets to me (this time of the month much more than others, unfortunately).  I hate being dependent upon someone else for everything.  I HATE to have to ask someone to do something for me that I use to be able to easily do for myself.

Soon I had another problem.

I have been smelling vomit on and off all day.

I have not thrown up today, or yesterday even.  I did wake up last night very sick, feeling like I was going to vomit and I did gag a few times but I did not, I repeat I DID NOT throw up!!  So why do I keep smelling vomit?

I smelled my clothes…no, but I washed up at the sink and changed them any way.
My pillow case, no.

My sheets, no.

Finally this evening, I asked Stuart, do I smell like vomit?  He looked at me, “I can’t imagine why you would. Everything around you is clean.”  Still, I got him to smell me, and YES, I smelled like vomit!  EWWWWW!

OK, Bath time.  I was feeling better than I had been so it was time to brave the bath.

I ran the water, added some Epsom Salts for my aches and pains and got in….and got sick!  OH…the walls started to breathe.  I ran cold water over my wrist.  Please do not make me give up my bath.  I tried and tried…but no…Stuart was holding on to me and leaned over to let the water out.  I cried.  I looked up into his eyes with the biggest saddest eyes anyone has ever seen with tears rolling down my cheeks and said, “But I’m still Stinky.”  Then I burst into uncontrollable sobs.

"But I'm Still Stinky." (Vintage Big Sad Eyed Child painting - artist unknown)

My dear husband got in the tub and helped me up, dried me off, and got me out of the tub.  I sat on the toilet, and said, “of course, now I feel better.”  Without a word, Stuart soaped up a wash cloth and gave me a sponge bath while I sat there.  Very gently, with lemon scented soap.

He helped me back to bed.  I looked at him, and said, “I’m not stinky any more.”  He just smiled and said, “No more Stinky.”

**Please note:  I started to post this last night.  I was entering the photos when suddenly I went into a full spin.  Stuart was kind enough to save the draft so I could put it out today.  This is how life has been for the past 16 days.  I may have been the bitch from hell yesterday, but I promise I’m not like that often, and he says it gives him a little bit of insight into what I’m dealing with…as long as it doesn’t happen every day.  : )  I must say, having 16 days of severe symptoms and now PMS on top of it all, I was a volcano ready to blow.

Thank you to my darling husband for not throttling me.  And by the way….that soup was damn good!!