Tag: Life

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.)

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?

Quick update – The little family is doing fine.

On By WendyIn Pregnancy Complications8 Comments
Penelope and Chris on New Year's Day

My friend and her husband have arrived.  Not as much to worry about as I thought.  (Yes, insomnia played a big part in all of that.)

Turns out she doesn’t have preeclampsia, so all the rules have changed.  She had a lumbar puncture and found out her cerebrospinal fluid pressure was way too high!  I sure can relate to that huh?  So they drained some of the fluid, and they are hoping to keep that under control.  She may actually make it to term!!  (yes, that means they will be here longer, but that’s ok.)  They don’t know if they can keep the intracranial hypertension (the fancy name for high CSF) under control, or if it will turn into preeclampsia also, so they have to keep a close watch on her.  Of course, we are hoping she can carry to term, and will not have to spend any more time in the hospital before delivery.

She can’t do the stairs much just yet, but that’s mostly because she’s so sore from the lumbar puncture.  She’s still having headaches, they drained a lot of fluid, perhaps too much too fast (IMHO) so it’s taking a little while for her body to regulate the pressure.  Hopefully the headaches will ease soon.  Right now she’s sleeping.

Penelope is such a lovely person, and her husband Chris is so gracious, I don’t think this is going to be very stressful on me at all.  Actually, it could be very helpful in many ways.

I was feeling a bit anxious about Stuart having to go to Alabama for a week, probably the week of the 13th, if they are here I will feel so much better.   I didn’t want  to miss our sign language class, so I plan to drive to class that night, I think I’ll be fine, but just needed to know if I got into trouble there would be someone I could call for help.  I’ve already mentioned it to Chris, and he was happy he could help.

It completely slipped my mine last night that Chris is a cook!  He’s already thinking of creative things he can make that are meat all our dietary restrictions.  He even assured us that he knows how to be careful with gluten products.  He’s offered to clean house, cook…anything.  I think he just needs to relax a bit.  After a while, he can worry about doing more things around here, but for a little while, I think they just need the peace and quiet that is our home.

They have both been gushing about how wonderful it is to have a peaceful place to stay.  They are so worried about wearing out their welcome, but I told them, that we’d just treat them as if they were roommates.  Their room is theirs, our room is ours, the rest of the house is community space, and as long as they don’t expect us to wait on them hand and foot, they shouldn’t be any trouble at all.  I don’t get to see Penelope nearly enough, I haven’t seen her in a couple of years at least.  I’m happy they are here, and so glad we get a chance to renew our friendship.  (not that we haven’t been friends even though we have been apart, but this is a great chance to get close again.)

We may move the little TV in their room for a little while, when Penelope feels more like moving around we’ll hook the cable box back up to the big TV down stairs.  Stuart and I rarely watch TV, we’ve actually been thinking about getting rid of cable.  When we watch shows we normally watch them from the computer.  It’s easier to watch what we want when we want, and not have to rely on the DVR to record the shows we want. (it often screws things up).  The only thing I really watch on TV live, is cartoons.  But I can always pull those up on Netflix.  (yes, I am love cartoons.  Just like a kid, I can watch them over and over and not get tired of them.)

I love that we are able to offer our home to our friends.  They are special people.   It also makes me feel less isolated, and needed.

I will admit, my husband actually made me a bit more nervous about things last night.  When he said he didn’t know if he could handle people being in the house for so long, I got worried.  Then that jumped to wondering all about what they may need, how we could work things out…ect.  But now that they are here, I think everything will be just fine.  (just liken you all said…I should have known.  Thank you my friends for the reassurance, and guidance.)

About my sleep.  Once again I didn’t get to sleep until about 6am. I woke up at 1pm, right before they arrived.  Again, I had the terrors while falling asleep feeling like everything is spinning around.  Again, I had bad dreams, not nightmares, just troubling dreams.  and Again, I woke up with a headache. Not severe, thank goodness, though it soon turned into a full-blown migraine.  I have to figure out a way to make these things stop.  I know I don’t have much control over the migraine issue, I’ll have to see the neurologist if this continues after my recovery period is over.  But you would think something could be done about the spinning and dreams.  Sometimes I’ll take a Valium a little before bed, and that helps with the spinning sensation, but it makes my dreams a bit freaky sometimes.  And I’m not too sure if the doctor would approve of me taking a Valium every night.  I’ll ask him on Monday.

And about dinner.  I just tasted the sauce and meatballs, oh my goodness, I will have to post this recipe.  How delicious!  And so easy.  Stuart loves meatballs but I always hated making them.  Now, with this recipe, I can make them much more often.

Turns out Penelope can’t eat the sauce at all.  She can’t eat beef either, or tomato products.  (I think the tomato products may just be because of the pregnancy and heartburn, but I’m not sure.)  Chris, is going to make her some pasta with a little chicken, spinach, pesto….  Yes, as I said he can cook!  She won’t know what she’s missing though, these meatballs are wonderful.

The Versatile Blogger Award

On By WendyIn Chronic Illness7 Comments

My friend, Maureen (otherwise known as Mo) from Day by Day with the Addison Girl, awarded me the Versatile Blogger Award!

As recipient of The Versatile Blogger Award, you must tell 7 things about yourself that your readers might not know.  Then pass the award along to 5 other deserving bloggers.

Whew….both of these things are tough.  The first part because, I’m kind of an open book.  There isn’t much I haven’t told on this blog at some point.  But I’ll try to think of something, hope I can keep your interest.

The second part is very tough, because I read some amazing blogs, to narrow it down to just 5…that’s tough.  Some have been narrowed down for me because I see they’ve won the award before, so to be fair I won’t pass it along to them.  But still, I read some amazing blogs, this is just a sample.

Seven Things You May Not Know About Me.

1. I sleep with a stuffed Monkey.  His name is Monkey Monkey Monkey…no really it is, I have his birth certificate and everything.

Monkey Monkey Monkey!

2.  I wear a size 4 in Boys Converse All Stars.  My favorite kind of shoes!  My hubby says I have baby feet.  I say that’s the real reason I can’t balance very well, my feet are too small to keep me steady.

I wore shoes just like these at my wedding reception. (I was barefoot during the ceremony) The entire wedding party wore Converse!

3. I have been known to snort and pee my pants when I can’t stop laughing.  Well, sometimes I’ll just snort when I laugh and it makes me laugh harder and harder, often while saying….”did you hear me snort?”   So glad I can laugh at myself now.  When I was a kid that horrified me.  (it’s still quite embarrassing to pee your pants though).

4. I didn’t fly in a commercial plane until I was in my 30’s.  I did fly in a little two-seater once before that, but for just a quick jaunt, I also went up in a helicopter before flying in a commercial plane!  (my father worked for the SC State Forestry, you know Smokey Bear, and he got me these rides in the plane and helicopter that they used for fighting fires.)

5.  As a rule, I hate to drive with other people in the car.  However, there are a few people who scare really scare me to ride with, so I always drive when we go places.

6.   I’m a huge Vincent Price Fan, and own an original Dr. Phibes Action Figure.  (The Abominable Dr. Phibes was Vincent Price’s 100th movie.)

7.  As you may know, I have a degree in art.  What you probably didn’t know, is that I was originally a math major.

So, how many of those things did you know about me?  It’s not fair if you know me in person!

I will now pass this award on to 5 bloggers…..and here they are, in no particular order….

  • Sunshine and Chaos – Maureen (a different Maureen than the one who awarded this to me) sums up her blog as:  “Things that amuse and bemuse me as I wander the wilderness that is invisible chronic illness.”   I love her description, and don’t think I could add a thing.
  • Fly with Hope – Kelly shows tremendous courage in her blog.  She doesn’t hide, she opens her heart and shows people what it’s like to live how she has to live.  Kelly has a deep relationship with God, that helps her deal with many chronic illnesses.  She describes her blog as “The thoughts of a woman who loves Jesus and is navigating her way through chronic illness.”   Be prepared when you read Kelly’s blog to see the dark side of her illnesses and feel the light she keeps shining to get through each day.
  • Creativity to the Max – Judith/Judy is an extremely talented and giving woman who lives with chronic illness and helps others.  Her posts can be very funny, poignant, sad, instructive, loving….  Even when her post have a touch of sadness, you can feel her sense of humor.  She makes me laugh nearly every day, either by one of her post, or from comment’s she has left on mine.  (of course, I should mention, that she’s really just Max’s human, and he is the real brains behind this blog.)
  • SoulComfort’s Corner – Rita is a creative, high spirited woman who is housebound due to health issues.  She “talk(s) about any art or craft project (she’s) currently involved in, the weather, movies, books, health, spirit, life, and (her) cat Karma.”  Her blog is comfortable, once you start reading it you feel you have found a friend…and you have.
  • A Day In The Life With Meniere’s – As the title says, Angelea, tells about her life with Meniere’s.  She also talks about life in general.  Angelea has a positive outlook, Is a great support and reminds us to live in the moment.

 

If you would like to pass your award along and participate in the Versatile Blogger Award, just tell us about yourself and let us know about five of your favorite blogs.  If not, that’s OK too.

 

Wow! What Adrenaline can do!!

On By WendyIn Life6 Comments

This slideshow requires JavaScript.

(I could not read over this post to check for errors, it was just too much of an emotional day. – NO, Sandy didn’t die…just scared us.)

When I got up yesterday, I was feeling a bit off, but better every day.

Stuart fixed me something to eat and brought it to me.  Our dog, Sandy, followed him upstairs.  She was coughing a little, she’s a small dog and has a collapsed trachea, this causes her to not be able to catch her breath sometimes.  This didn’t sound worrisome, it was just a little cough, Stuart went over and straightened her throat to open the airway and she stopped,  So he scooped her up on the bed to be with Mom.  I noticed she was still breathing very hard, and her heart was just pounding, she leaned on me (this isn’t unusual) and I tried to calm her down.  Then she just fell over on the other side, she started to do these little yelps like she was in pain and stopped breathing.  I thought she was dead!  I grabbed her and opened her mouth and breathed in for her and pushed the air out again a few times…she began to breathe again.

I grabbed up my 21 pound dog and told Stuart to grab my pants I’d put them on in the car, and ran (yes, ran as much as you can carrying a 21 pound dog) down the stairs.  By then she was wagging her tail thinking this was some kind of game.  I put her down and she was still unsteady, but getting back to her normal self.  I threw on a pair of sweat pants, a jacket some shoes, while Stuart was on the phone with the Vet and putting on his shoes.  We were out and to the vet in less than 15 minutes.

The verdict, my baby had a seizure.  They don’t know why.  She is 19 years old.  They took all kinds of tests (she was due for her annual visit anyway), and we are to take her resting heart rate a few times throughout the week.  It could be her heart, it could enlarge and then cut off the airway, or it could be because of the collapsed trachea, or the cancer could have gotten to her brain.  We just don’t know.

If the resting heart rate test is off, then they’ll start her on heart meds.  If she has repeated seizures, they may just put her on seizure medication.

The good news.  The vet felt all around her bladder and could not feel the tumors.  So they have not progressed as they expected.  She’s still urinating fine, and that all looks good.

When I say my dog is 19, and has bladder cancer, Alzheimer’s, cataracts, hearing problems….I just know people are thinking that we are cruel not to put her down.  But Sandy is a happy dog!  She’s not in pain!  The vet has never even hinted that Sandy may not be living life to the fullest.  She still chases the cat, runs around…

When we checked in at the vet yesterday, the lady behind the desk said, that she has an old girl too….then she looked at Sandy’s age and said, WOW! Well, not that old, she looks great for her age.

Sandy is so very special.

Yes, I paid for my adrenaline rush.  I came close to falling more than once, but I would not stay home and not be there for my dog.  (I can only imagine what they thought when I walked in…a t-shirt that’s way too big, sweat pants, Stuart’s blue jean jacket, I hadn’t brushed my hair or my teeth…ewww. and I was walking like I was drunk.)  But there was no way I was leaving my dog!!

I did collapse a little when I got down stairs because I almost fell and was very dizzy, and thought…I can’t even take care of my dog!

What if Stuart hadn’t been here?

Stuart has an interview in Birmingham, Alabama next Wednesday.  It’s for a telecommute job, one he really wants.  But we haven’t found anyone who could stay with me.  I really think I would be alright by myself, but what if there is an emergency?  What if something happens?  I can’t drive.

We’re going to try to find a neighbor who would be home during the day, just someone I can call on in an emergency.

Here’s hoping we can find someone!  And hoping Stuart is offered this job!

And please send healing thoughts to my precious little girl.

She is a huge part of our family!!

 

Thankful for Today!

On By WendyIn Meniere's Disease7 Comments
Drawing by Ayla Probst (10 years old) A surprise gift in the mail for me today.

Today was a good day!

I’m sitting here after a glorious day.  A day most people take for granted.

This week we celebrate Thanksgiving in the US.  It is a time to reflect and be thankful.

Today I am thankful for good days!

Most people wake up in the morning, and simply start their day, without a thought about it.  The first thing I do when I wake up is take stock of how I feel, and decide if I can make it to the bathroom alone or if I need to call for help.  Today I awoke to find myself feeling…good…I mean really good.  This is so unusual lately I was surprised, and very grateful because Stuart wasn’t home.  I got up, did my morning routine, with aw.  As I walked down the stairs I realized I hadn’t been downstairs since last Thursday, and that wasn’t for long.

I had a little to eat and decided to sit out on the back porch and enjoy the sun.  Today was a beautiful day!

Stuart was home soon and surprised to find me outside, and feeling so good.  Not just OK, but good.  I wanted to get out of the house, but wanted to make sure I didn’t over do it again.  We decided to take a drive, but right before we left I started to feel a little off.  Head a bit swimmy, so I decided to take some medication, just in case.  So we jumped in the Bug and put the top down.  We drove to a town near by, stopped at a drive in fast food restaurant, and had a treat.  We came home and I decided I still had some energy to spare, so we cut back the dead flowers, and I cut the herbs I could save after the last frost and hung them to dry.

Stuart went to the mailbox and I was so tickled to find a card from one of my favorite people.  A friend of mine’s daughter, Ayla, she’s 10 years old.  They live in Tucson so I rarely get to see them, but for every occasion she sends me a card, normally with a drawing included.  She knows how much I treasure her drawings.  You can see her drawing at the top of the post.  Yes, that is a penguin in the hot air balloon.  Ayla, loves penguins. Isn’t she the best?

Yes, you are right, it was last Monday that I felt so good.  So what is it about Mondays?  It’s not like my weekends are any different from every other day.  I said to Stuart, “So, am I just going to feel good on Mondays?”  He said, “No, you’ll feel good tomorrow, you have an appointment with Dr. Kaylie, and you’ll feel good on the 5th, you have an appointment with Dr. Gray.”  I just sighed, knowing he was probably right.

Isn’t that often the way?  We can feel like crap for the longest time, then the day we go see the doctor, we feel better.

I hate to even say this, but I kind of wish I would feel bad tomorrow, so my doctor could see what I’m going through.  *cringe*  I know I really shouldn’t say that out loud…or even write it.

Here’s to never taking a good day for granted, and enjoying the small things.

I decided that was enough.  I’m not going to push it.

 

I give already!

On By WendyIn Chronic Illness10 Comments
image by sodahead.com

There are a few things I just give up about right now.

1 – trying to do this months blogging challenge…not going to happen.  Blogging every day right now, too much stress to think about it.  Even trying to write posts in advance for them to come out on the right day…it’s too much.  Plus, I don’t see the point, why was I trying to do this again?  To say, yes I accomplished this?  Is it reaching more people?  I haven’t had any comments from new people.  I have noticed I’m getting more Spam.  I’ve been spending so much time trying to keep up with my writing, I haven’t had the time to read other people’s post.  I’d rather spend my time keeping up with my friends.

2 – trying to lose weight.  Yeah, I feel like I gave this up months ago, and probably did, but while I’m feeling this crappy, and so much of my nutrition is going right through me or coming back up…I’m not going to be too weight conscious.  (however, every time I look in the mirror I think…who is this fat person? *sigh*)

Look at the pictures below, one was taken January 2010, the other was taken July 20th, 2011.  See how much fuller my face is?  And I’ve gained weight since the latest picture was taken.  (you do not want to see the rest of my body…I’ve gone from a size 8 to a size 16.)  *sigh again*  But how do you lose weight while lying in bed, and can’t cook?   Plus I have this little thing that keeps whispering in my head..”if you eat something you’ll feel better.”  How do I get rid of that?

I know, many of you will say, there isn’t much difference, but in the photo taken in July, I was trying to not show how large I am.  I had my head tilted up, to take away my double chin, I had my hair partially on my face…on the left I weight 147lbs. on the right I weighed about 182lbs.  I now weight 190lbs.  The heaviest I’ve ever been.  *I literally sighed again*

Picture of me taken January 2010
Photo of me taken July 2011

 

 

 

 

 

 

 

 

 

3 – who ever is holding this vertigo, and headache pain over me…I just want to say…I give up!  What ever you want, I give!  Just please stop.  (Don’t worry my friends, I’m OK, I know it’s just my lot in life right now, a season some might say, it’ll pass, I’ll make sure of it.)   I’m learning so much about me, friends, chronic illnesses… I’ve decided to take this time that I’m feeling crappy to just reflect, and reevaluate what is most important to me and possibly change my priorities.)  One thing I know for sure, I want to live every day I feel better to the fullest!  Live in the moment!

4 – I give up on trying to go to parties, or noisy restaurants, or any place that’s noisy.  Let’s just say, I give up on trying to hear in noisy situations, and getting so frustrated, and feeling so isolated because of it.  One on One, or Small Groups are better anyway.

Now for an update on how I’m feeling:

Since Wednesday I’ve had a constant feeling of vertigo…no not the major throwing my guts up attack kind, but every time I move my head…Whoosh!  And if I close my eyes it feels like I’m moving.  Sleep has been very hard.  But I did get a few hours last night.  If my head would stop hurting I’d probably be able to get more.  My head, oh my aching head!  My head hurts so much.  My neck hurts.  It’s hard to turn my head…that’s probably a good thing since it makes me dizzy, but it hurts.  (Oh, did I mention it hurts??!!  And nothing I’ve taken for it touches the pain.)

I’m having a lot of GI distress for the past few days too.  If I were running a fever I’d swear I had the flu…at least I’m not that achy.  (except, did I mention my head and neck really hurt?  ….  yeah, I guess I did.)

I finally realized exactly what was so very different from this past attack than previous ones (yes a few things were different, but I think this is pretty strange.)  Normally my vertigo spins clockwise, this time I was spinning counter-clockwise.  I remember distinctly how the TV was falling to the left, and the vent on the ceiling was moving to the left.  Isn’t that strange?  I know it probably doesn’t mean anything, I just thought it was strange.

Anyone else notice how they spin?  Clockwise or Counterclockwise.  I have a friend with Ramsey Hunt Syndrome and she told me she always spins counterclockwise.  (but, I don’ t think she has extreme vertigo attacks like those of us with Meniere’s…but I’m not sure, I’ll have to ask again.  However, we all know, even minor vertigo can cause great distress.)

To conclude, many people say to never give up, but when you have a chronic illness you have to realize there are things you simply need to give up.  Things are different now.  I used to have a very hard time telling people “No”, now I often say “maybe”, and often I have to say “no”.  I must decide, is it worth the consequences.  Will I feel worse afterward?  Will I feel isolated because I can’t hear?  Will I be in a safe place if I have an attack? There are many things to think about now, I can’t just say, “sure, I’ll do that”.  I have to do what is best for me physically, and mentally.  (as some may say, I need to really think about how I’ll use my spoons.)

Stress makes most chronic illnesses worse.  Even good stress.  I have to remember that, and choose accordingly.

How has having a Chronic Illness changed your priorities?

 

 

November is NaBloPoMo Month.

On By WendyIn Chronic Illness4 Comments

This is the month to do so many things, every day for the month…and celebrate Thanksgiving too…how will I get it all done?

First, I will be participating in NaBloPoMo this month.  Yes, you will probably get very tired of me, and I’ll probably run out of things to say.   I can hear all of you right now…”YOU, run out of things to say?”, while rolling on the floor laughing!

Later today, I’ll be sharing a great list written by Allison at Taking Life For a Spin  of things you really shouldn’t say to people with a chronic health problems.  I’ll be looking forward to hearing what everyone else may want to add.

I’ve also just joined 

National Health Blogging Month by Wego Health gives writers prompts for each day, some days I’ll probably use their prompts, other days I’ll probably just be posting about what I think is important.  #NHBM allows for 2 free posting days.  Days when you just can’t post.  That’s a good thing for people who have a chronic condition.  As we all know, some days we just can’t.

On my other blog, Create To Heal, I’ll also be participating in Art Every Day Month over at Creative Every Day…this is a more laid back challenge.  It’s a challenge to simply Create More, if you happen to miss a day, don’t give up…this is incentive, not a contest.  This challenge also doesn’t require a post every day, you can post once a week, what you’ve been doing, just what ever feels right, and what ever you can do.  I like this, but I plan to post every day.  After all, I’ve been trying hard to create something every day, may as well let you see it day by day.

If you’d like to be involved in NaBloPoMo, just go to this link http://nablopomo.blogher.com/ and follow the directions.  You can add your blog until November 5th, but you must have posted every day in the month of November to be eligible for the prizes.

But why November, I know that all of this is a take off from NaNoWriMo, where writers are challenged to write a novel in a month, and it started in November.  However, again I ask, why November?  I think it’s going to be a tough month to do something like this.  Every Day.  At the beginning of the holiday season.

Granted, we don’t do much for Thanksgiving, and I don’t think Christmas celebrations will be as busy this year.  My hearing problems are prohibiting me from going to many parties.

To wrap it up then, I think this should be done during a really boring month, like…um…August, September…something without a major holiday.

This is going to be a challenge.  As I said before, there are days when we just can’t…..however,

I’m going to try.

wish me luck, and please, let me know if there is something you want to know more about.

This post was written as part if NHBPM – 30 health post in 30 days: http://bit.ly/vU0g93, and is also a part of NaBloPoMo

What are you reading? Banned Book Week

On By WendyIn Life10 Comments

This post isn’t like most of my posts.  It doesn’t talk about me, but it does talk about something close to my heart, Reading and Censorship.

I read – A LOT!  I believe reading is one of our fundamental rights.  I do not believe any book should be censored.  If you don’t want to read it, don’t.  If you think your children shouldn’t read it, don’t let them.  But banning books is wrong, and goes against the First Amendment.

 

Take Action!  Protect your right to read!
September 24 – October 1, 2011 is Banned Book Week.

Sponsored by the American Library Association (ALA):

“Banned Books Week (BBW) is an annual event celebrating the freedom to read and the importance of the First Amendment.  Held during the last week of September, Banned Books Week highlights the benefits of free and open access to information while drawing attention to the harms of censorship by spotlighting actual or attempted bannings of books across the United States.”

As some of you may know, I made  out a list of 101 things I wanted to accomplish in 1001 days.  Reading 3 books that have been banned is on that list.

Here’s a partial list of the most often Banned or Challenged Classics:

  1. The Catcher in the Rye, by JD Salinger
  2. The Grapes of Wrath, by John Steinbeck
  3. To Kill a Mockingbird, by Harper Lee
  4. The Color Purple, by Alice Walker
  5. Ulysses, by James Joyce
  6. Beloved, by Tony Morrison
  7. The Lord of the Flies, by William Golding
  8. 1984, by George Orwell
  9. Lolita, by Vladimir Nabokov
  10. Of Mice and Men, by John Steinbeck
  11. Catch-22, by Joseph Heller
  12. Brave New World, by Aldous Huxley
  13. Animal Farm, by George Orwell
  14. The Sun Also Rises, by Ernest Hemingway
  15. As I Lay Dying, by William Faulkner
  16. A Farewell to Arms, by Ernest Hemingway
  17. Their Eyes were Watching God, by Zora Neal Huston
  18. Invisible Man, by Ralph Ellison
  19. Song of Solomon, by Toni Morrison
  20. Gone with The Wind, by Margaret Mitchell
  21. Native Son, by Richard Wright
  22. One Flew Over the Cuckoo’s Nest, by Ken Kesey
  23. Slaughterhouse Five, by Kurt Vonnegut
  24. For Whom the Bell Tolls, by Ernest Hemmingway
  25. The Call of the Wild, by Jack London
  26. Go Tell It on the Mountain, by James Baldwin
  27. All the King’s Men, by Robert Penn Warren
  28. The Lord of the Rings, by J.R.R. Tolkein
  29. The Jungle, by Upton Sinclair
  30. Lady Chatterley’s Lover, by D.H. Lawrence
  31. A Clockwork Orange, by Anthony Burgess
  32. The Awakening, by Kate Chopin
  33. In Cold Blood, by Truman Capote
  34. Satanic Verses, by Salman Rushdie
  35. Sophie’s Choice, by William Styron
  36. Sons and Lovers, by D.H. Lawrence
  37. Cat’s Cradle, by Kurt Vonnegut
  38. A Separate Peace, by John Knowles
  39. Naked Lunch, by William S. Burroughs
  40. Brideshead Revisited, by Evelyn Waugh
  41. Women in Love, by D.H. Lawrence
  42. The Naked and the Dead, by Norman Mailer
  43. Tropic of Cancer, by Henry Miller
  44. An American Tragedy, by Theodore Dreiser
  45. Rabbit, Run, by John Updike
Here’s a link to the Banned and Challenged Book List by the American Bookseller’s Foundation for Free Expression (ABFFE) http://www.abffe.com/bbw-booklist.htm
Top ten most frequently challenged books of 2010

Out of 348 challenges as reported by the Office for Intellectual Freedom

  1. And Tango Makes Three, by Peter Parnell and Justin Richardson
    Reasons: homosexuality, religious viewpoint, and unsuited to age group
  2. The Absolutely True Diary of a Part-Time Indian, by Sherman Alexie
    Reasons: offensive language, racism, sex education, sexually explicit, unsuited to age group, and violence
  3. Brave New World, by Aldous Huxley
    Reasons: insensitivity, offensive language, racism, and sexually explicit
  4. Crank, by Ellen Hopkins
    Reasons: drugs, offensive language, and sexually explicit
  5. The Hunger Games, by Suzanne Collins
    Reasons: sexually explicit, unsuited to age group, and violence
  6. Lush, by Natasha Friend
    Reasons: drugs, offensive language, sexually explicit, and unsuited to age group
  7. What My Mother Doesn’t Know, by Sonya Sones
    Reasons: sexism, sexually explicit, and unsuited to age group
  8. Nickel and Dimed, by Barbara Ehrenreich
    Reasons: drugs, inaccurate, offensive language, political viewpoint, and religious viewpoint
  9. Revolutionary Voices, edited by Amy Sonnie
    Reasons:  homosexuality and sexually explicit
  10. Twilight, by Stephenie Meyer
    Reasons: religious viewpoint and violence
Hummm, what to read, what to read?
What are you reading?  Is it on a banned list?  Do you think some people would think it should be?  (I personally think that almost any book could be challenged by someone.  There are even some books that I’ve read, and thought, this book should never be read by anyone!  But that’s not for me to say. ‘ I may not agree with what you say but I will defend to the death your right to say it’, – Voltaire’s philosophy loosely paraphrased.)
What do you think about banning books?

So, What am I mad about now?

On By WendyIn Chronic Illness, Life, Meniere's Disease, stress7 Comments
I Don't Like Me When I'm Angry!

I mentioned in my last post that I’m dealing with some anger issues.
I’m not talking about getting a bit upset here and there, I’m talking about some deep seeded resentment.  Something down in my gut that is just eating away at me.  Perhaps that is a bit strong…but I wanted to make a point.

I’ve been snippy, grouchy, teary, snappy….  Oh, let’s just say it, I’ve been a bitch lately.

Not all the time, at times, I’m a perfectly likable me.  Positive, light hearted, smiling, laughing…  Then unexpectedly, something will hit me in just the wrong way, something that normally wouldn’t mean anything, and I want to explode.

Finally, I tried to take a step back from the situation.  And ask myself, what are you REALLY mad at.  I’ve come up with a few things, some I bet you have felt at times, others may just be me.  I don’t like being like this.  I try very hard to keep a positive attitude, to believe things will work out, to understand that even if they don’t, I will survive.  No, not just survive, I will thrive!

It has been hard lately.  Spending almost every minute lying down.  Having horrific headaches, hearing things that aren’t there….well you all know what I’ve been going through.

And that my friends is what, I believe, I’m mad about!

I don’t want to sound petty, or ungrateful, or as if I don’t have hope.  This is just anger.  It may not be totally justified, and it’s not fair that I keep snapping at my husband, but it’s there, and I felt like I should discuss it.  (perhaps giving it a voice will help it to go away.)

I’m MAD…

  • that I’m not cured.  I know I kept saying that I understood that this was not a “cure”, that I know I still have Meniere’s Disease, and that I could handle it if my symptoms returned.  That this procedure gave me hope, and I would cherish every moment I had as a “normal” person.  (I’m not saying that those feelings have changed.  I still feel that way….but I’m still angry that it’s happening…and I don’t like myself very much for saying that.)
  • that I thought this was over.  I don’t feel that I was being as realistic as I should have been.  I’m not sure I was being honest with myself.  I knew the possibilities it could happen again, and I would need more treatment…but I don’t think it really sank in.  I put those thoughts aside and thought about the future…for the first time in a long time.
  • that I don’t feel I can plan for the future any more.
  • that I’m scared.
  • that I can’t do things I need and want to do.
  • that my house needs to be cleaned.
  • that Stuart has to do everything, and I keep getting angry with him when things aren’t done.  Or done the way I would do it.  How can I get angry at him for this?  Or am I really just angry because I can’t do it?
  • at my friends, who haven’t gotten in touch, who haven’t offered to help…the most I get from most is a quick note on facebook.  I know this has been going on for a long time, I know that my friends have lives and responsibilities.  I don’t blame them.  But I’m still hurt, and angry.  I don’t want them to feel bad.  I don’t know what I want, or expect.  I have 2 local friends who really keep in touch with me.  1 emails me often, 1 often chats with me on line.  (and I know he would be over to see me more often if he wasn’t having troubles of his own right now.)
  • at my family.  Who have never offered to help in any way.  (I must put in here, that I didn’t expect it.)
  • when I read about others who have so much more help.  Who have friends who bring them dinner, or family to come stay with them for a while, or someone to just sit with them.  (again, don’t get me wrong, I am so very grateful for what I do have…especially my husband)  But I am hurt, and disappointed that I don’t have more people who reach out.  And I’m mad at myself for being jealous of those who do.

Oh, I’m certain I could go on and on, but I’m sure you understand by now.

This anger isn’t deserved.  It’s not even real in some instances.  I think it’s mostly about the situation.  I don’t want to be in this situation, and it makes me mad.  I don’t want my husband to be in this situation, and it makes me mad.  I don’t want to have my life on hold, and it makes me mad.

I’m trying to write this objectively, and honestly…but I’m not sure those two things go together right now.

When I got so much better after my patches in January, I started to see my friends at gatherings and things.  At first it was very hard.  I was angry at them.  It’s hard to explain.  These people mean a lot to me, but I felt like they forgot me when I wasn’t able to do much. Most didn’t ask Stuart if he needed anything.  Even when I would reach out and say exactly what I needed, I usually didn’t get it.  (I’m not talking about big things here, I wanted contact, emails…anything)  As I said before, I understand that people are busy, they have lives, and it’s hard to deal with a friend who has been having health problems for a long time, it’s not like it’s something that just goes away after a visit to the hospital, or one time bringing a caserole…this illness lasts…well, a life time.  Finally, I was beginning to feel better about things.  We would go to parties and I felt that I could mingle, and talk with people, and not feel that under current of anger.  I don’t want to feel like that again.

I am overwhelmed by everything that is happening to me.  In just the past 2 years my hearing has gone from some hearing loss in my right ear, to severe hearing loss in both ears.  I just got hearing aids in March, and I can barely hear out of them now.  When I don’t have my hearing aids in I can barely hear myself talk.  I realized I was screaming at Stuart the other night because my throat started to hurt.
But at times, for short periods of time, I can hear better.  So I don’t know what to do about the hearing aids if my hearing is fluctuating so much again.  (I’ll see Dr. Kaylie next month, I’ll ask him then.)  Of course, I’m hoping that after seeing Dr. Gray I will have some answers and my hearing will improve again.

This hearing thing makes me so mad!  Partially because of losing my hearing…but not really…I think I’m handling that pretty well.  But because having my hearing drop has always been a sign of a Meniere’s Vertigo Attack coming on.  So now, I’m constantly on alert.  I’m so jumpy, and jittery.  Every time I move my head and get a bit off balance, I’m convinced I’ll be spinning soon.  Or, I start to get used to it, and start to ignore it, like I did the other day…and I was almost hit with a full blown attack.  (yesterday, was more of the same.  Lot’s of mini-spins.)

I am trying very hard to deal with this anger.
Dang-it!  I’ve had some crappy stuff happen lately, and I’m pissed!

I’m also trying to come to terms with it.  To feel some of it and not bury it.  Just writing this helps.  Now I hope I can deal with it, and move beyond.

But, I’m also very grateful that if this was going to happen, it did it now.  Before we brought a child in to our lives.  I’m grateful, that I have good doctors who really care, and will do all they can to help me.  (I just wish I could have gotten in to see them faster. – and yeah, I’m pissed about that too!)  I’m more than grateful for my loving husband, and all that he does.  I just wish I could help him more, or get him some help.

I also want you to know…ALL OF YOU…how very much you mean to me.  How much your encouragement, and caring words have helped me through many a rotten day.
**I saw a post on Fly With Hope today, and I thought, “Yes!, that’s what I wanted to say!”  http://flywithhope.blogspot.com/2011/08/less-bitter-more-thankful.html  Thank’s Kelly, I needed to hear this.  I’m feeling more thankful already.  I promise I will not let this anger fester and become unrelenting  bitterness.