Good Days – A Charity to help with medications.

I came across a charity today that some of you may be interested in…or someone you know may need.

Click on image to go to Good Days website.

 

good days from the Chronic Disease Fund, helps people with (some) Chronic Illness pay for (some) medication they can’t afford.

When you first read their publicity, it sounds like they’ll help anyone with a chronic illness who needs help paying for medication.  However, when you read closer you find that only certain illnesses and drugs are covered.   They may not cover everyone, but it could be VERY useful to those who they do cover!  They are very strict about one thing.  The “require that patients are 100% compliant with their prescribed treatment. By maximizing compliance, we can achieve our goal of improving patient health and quality of life. To assist our clients in staying compliant, the Fund provides free access to DiseaseTrak™, an online therapy management tool.”  If you do not follow your prescribed treatment you will be dropped from the program to open up a spot for someone who will.  I understand this completely.  If someone isn’t going to take their medication as intended, why should the charity help pay for it?

Look over their website see if it can help you or anyone you know…then pass the information along…

Click on this image to go to the Good Days site.

 

Wow! What Adrenaline can do!!

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(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!!

 

Thank you for the nomination!! Updated

First let me say, I’ve started 2 posts and haven’t finished one…I also have some big news from today, that will just have to wait because I want to share something with you.

I don’t know who sent my name in, but I am so humbled, and excited that I have been nominated for a Health Activist Award sponsored by Wego Health.   To see the awards available, to nominate someone, or just find out more, please go to:  http://info.wegohealth.com/awards-2011/.  If you would like to be on the jury and help pick the winners go here: http://info.wegohealth.com/awards-jury/  Winners will be announced January 12th.

I was nominated or TMI Award (Too Much Information) Award – This Health Activist always goes there – no matter how personal or embarassing the story.

I was sent an email telling about my nomination, with a copy of what the nomination said, but it did not include who did the nominating.

I want to sincerely thank you from the bottom of my heart.

If I win our not, this nomination touched me so very deeply.

(BTW, to be shameless here, you can also vote to nominate me – or anyone you want – at http://info.wegohealth.com/awards-2011/)

I would love to win, but just being nominated  *getting chocked up here*  well, for someone who always lays it out there, no matter what, it’s hard for me to put into words just how much this effected me.

I just adore you, my dear, sweet readers.   You have supported me and have become so very close to me, I am proud to call you friend.

I thought some of you might like to read the nomination that was sent in.  (as you all know I’m pretty open and blunt…and so is this nomination….so beware if you are a new reader.)

Reason: I am nominating Wendy for this award because she shares every detail of her life no matter what it is. Currently she is going through recovery from surgery and described how her husband had to take care of her while using her bed pan-and as she is on her period! She also discussed how the hospital workers insist on giving you a PG test even if you have not been physically able to do the very thing that would make you pregnant. She made me laugh when she said her husband commented the silliness of this PG test prior to her surgery by saying “Well, if you are giving birth to the messiah we want to make sure we don’t cause him to have birth defects.” How many of us with chronic illness have been through that but never shared it. She did honestly and with humor. As seen in the comment section of her blog, people are moved by how in each blog she writes she is always herself and unguarded. Through her expression of how rough things can be, others can read her entries on depression or bipolar where she lays it out as it is. There is no film of protection on her writing. Wendy certainly deserves the TMI award. 🙂

I am so ‘effing STUPID!

Picture by: http://www.theshamsband.com

OK, today will be day 9 since they cut my ear from top to bottom around the back, and pealed my ear forward (basically, off),  then they took a piece of skull from my head, and opened up the cavity a bit more, so my endolymphatic sac would have more room, and I, hopefully, will have much less vertigo.

That’s the jest of it, and as you can imagine, it takes some time to recover from this.  A bit more than 8 days.

For a week, I had constant vertigo, could not even get out of bed to go to the bathroom.  Then it started to settle down, I started to walk again, I believed I was on the mend (still do, but no thanks to me.)  Yes, two days of improvement, and I think I can conquer the world…or at least the bathtub.

I’ve had a very hard time hearing recently …the past couple of days or so.  I hear about every third word my husband says.  I sound like a parrot who only knows hot to say, “What?”  The TV sounds like it has a broken speaker.  The tinnitus has been going crazy.  I’ve been getting more and more frustrated.  Not only because my hearing seems to be all wonky….in my right ear…my better hearing ear, but also because I am so tired of being dependent on someone else for everything!

Yesterday, I think a lot of the sleepless nights, and being a constant caregiver started to take its toll on my husband.  He was worn out.   I wanted something so badly, but I wasn’t about to ask him for it.   I wanted him to rest, and I was already feeling bad about how I was treating him.  When I get scared and frustrated…well, I sometimes start a fight.  I think I just want to be in control of something.

So I got all hot under the collar, and got up and went in the bathroom.

And took a Bath!  Yes, this is the part where you can say…ARE YOU STUPID, or CRAZY, or just what ever word you want to use to show I was not using the best judgement.  But oh, the water felt so nice, I relaxed so much, I dozed off for just a moment…then Stuart came in to check on me.  (what a guy, I blow up at him for nothing, and he still comes to check on me.)  I thought, perhaps now would be a good time to soap up, rinse off, and get out of the tub while I have him there to watch over and help me.

All went pretty well,  until I started to get up and out of the tub.  Then it all fell apart!  Stuart always wants to help, but I’m not a small girl, he only has about 30 lbs on me.  So I’m always afraid he will hurt himself, or we’ll end up falling together.  Plus…I’m like a kid sometimes…”NO, I can DO IT!  Let me DO IT!”  you understand.

Stuart was close, and trying to help me as much as I’d let him, and I slipped.  My knee hit the bottom of the tub, both ankles bent under me, and I hit my head on either the wall or the side of the tub.  I lost it.  I completely broke down.  Not because I was hurt that much, but because I did something so stupid.  (When I say I completely broke down, I mean sobbing and heaving and not being able to catch my breath because I was so upset.  I started to get dizzy, I started to feel sick….I had to calm down, but I couldn’t.  I knew taking a bath was beyond my limits right now, but I just had to do it!  How many times have I encouraged others not to do what I did tonight?  To take care of yourself, to listen to your body?   If you don’t take care of yourself, you won’t be able to help others…  Did I practice what I preach?  Heck no.

So now I have two twisted ankles, a bruised and slightly twisted knee, and a very small sore spot on my head.  I’ve had my legs elevated and ice on everything.  It looks better…we’ll see how it feels in the morning.  (I really hope I haven’t sent my recovery backward.)  It really doesn’t hurt any longer, I’m hoping it will all just be a bad memory in the morning.

Then to top everything off, I started to put on this oversized t-shirt I like to sleep in, and caught the neckline on my ear!  Yes…that ear!  Hours later and it still hurt.  Luckily, I didn’t rip open the incision.  Sturart says it looks good.  A little red at the bottom, but I think that’s because it’s itching and I keep rubbing spot right under the incision so I won’t scratch it!

So the next time you think about doing something that you know your body really isn’t up to…take it from me…Don’t do it!!

Take care of yourself.

I hope my husband can have a little off time tomorrow or some day very soon.  A friend is coming to visit soon, she wants to give Stuart a little time off….at least a few hours.  (thanks Linda).  I hope he will take it.

What bothers me the most about all of this.  Stuart was already exhausted, then he had to save me, and take a lot of time taking care of me, all because I was just dumb.

 

 

Day 8 – Much better than yesterday!!

Today I can get up and go to the bathroom on my own!!!  Well, with a little help, and it wears me out every time…but walking those 10 feet is a great milestone after being stuck in bed for a week.  To go from not being able to lift my head, to being able to walk those 10 steps to the toilet…what joy!

With Stuart’s help, we even brushed my hair today.  I do believe a little family of mice were about to move in, they’d already made big nest!  Thank you to whoever, invented the detangling spray..  Perhaps, Johnson and Johnson – No More Tears detangler…I have an off brand, but still no tears!  It did wonders.  The mice will not want to take up residence now!

The pain is minor to moderate, depending on the time.  The headaches are still there, sometimes much worse than others.  Pain medication or Maxalt seems to be helping with those.  I’m still seeing blood from my ear, but nothing yellow, and it appears my temperature has returned to normal!

I really didn’t expect to have such strides so fast, but I’m thrilled that I was wrong.  I know, I may have some set-backs.  Especially since the feeling in my ear still isn’t completely back.  Let’s hope that the severe vertigo stays away!  (we even got my ear ring back in.  I thought I wouldn’t see that ear ring back in.  When I turned 35 I had my upper ear pierced, sill I know, but it meant a lot to me.  So we took advantage of my ear still being a bit numb and put it back in!)

To close…a drawing I colored last night/today.

Christmas Tree - by w. Holcombe

 

…Welcome Christmas bring your cheer
Fahoo fores dahoo dores
Welcome all Whos far and near….  
                                                                                                                                                                           
an excerpt from Dr. Seuss’ “Welcome Christmas Song”
Happy Holidays to all my friends – far and near.

 

 

 

 

 

 

 

 

 

 

 

One week after surgery… So, recovery day 7.

ReCOVERY - w. holcombe

I must say, if I didn’t know other’s who have been through this just as bad as I’m going through it now, I would be VERY discouraged.

I’m nauseous most of the time, I still can’t lift my head, can’t get out of bed…every day I think…well, this is the worst day so far.

I’m anxiously waiting for a day when I think….Oh this isn’t as bad as yesterday!

The pain in my ear has increased, can someone please remove the ice pick that is being jabbed in my ear!

I’m also having intense pain down my neck, I can’t open my mouth as wide as I should, the whole left side of my throat hurts ….  You know, I feel like I have the mumps, on just the left side.

I’m grateful that the worst of the pain is a sharp pain that doesn’t last very long.  The aching pain in my ear, is always there, but it’s not nearly as bad as the “Out of the Blue, Slam me in the Head” type of pain.

My fever seems to be less than it was, but I’m still achy all over, and the swelling is almost gone.  (see there is some good news!)

My ear still isn’t draining like it did the first time, but it is still bleeding a bit.  Not a lot, but ick, blood coming out of your ear…need I say more?

So why is it that whenever I’m sick, things always get worse at night?  I run a higher temperature, the pain is more intense…  Stuart thinks it’s so very odd, but I remember as a child, whenever I was sick, I would always be worse at night.  Is this strange, or do other’s have this happen too?  Is there a reason for it?

I think that’s about it.  I’m sad that this recovery is so taxing.  I’ve mentioned before, when I close my eyes the vertigo gets more intense.  It’s so very, very hard to fall asleep, or to sleep well.  I am completely exhausted.

While I’m awake it’s a bit easier to deal with, but when I’m asleep, I’ll start to roll over, and Whoosh! goes the Vertigo (yes, you must say that to the tune of Pop! Goes the Weasel!)

Perhaps tomorrow will be a …. “this isn’t as bad as yesterday” – day!

Endolymphatic Sac Surgery – Recovery Day 5

PAIN - by W. Holcombe

Today is about the same as yesterday.

Still can’t move my head without the world spinning.  I tried to ease myself up…first slowly into a sitting position, waiting a long time each time I raised a little more.  I thought I was at the point of sitting up, but boy was I wrong.

Dr. Kaylie said this kind of thing is possible, and to take more Valium.  From the people I’ve talked to who have had this surgery, I think it’s a bit more than possible, I’m thinking it’s pretty common.  The Valium helps a little, I can move my head a little bit, and don’t feel like I’m going to barf all the time…thank you to whoever invented Phenergan!  I’m glad to hear this will end, if I thought I had to live like this all the time, I think they would have to lock me away because I would go crazy.

Stuart and I have are handling things pretty well.  I’m less horrified by him having to help me with all my personal needs.  (I must say, I never realized I peed as much as I do, I knew I drank a lot, but wow!  You really notice it when you have to ask for help with it, you become acutely aware.)  My husband has such a wonderful attitude, and is so generous and compassionate.  It’s funny how we never seem to see the virtues other’s see in us.  Stuart does not see that he is a very good person!

My ear is draining now.  The swelling is less, I’m wondering if that’s why it wasn’t draining?  Too swollen?  The drainage is very bloody.  And I have to change the cotton in my ear about every hour.

My biggest challenge now is sleeping.  I have a very hard time falling asleep because when I close my eyes the world spins even more.  Finally, when I’m so exhausted I will drift off.  Waking is even harder on me.  Every time I wake up I feel worse.  The vertigo is worse, the pain is worse….

I sure hope this starts to level off soon.  At least to the point where I can get to the bathroom.

Wouldn’t it be a great Christmas present to have this surgery work, and have my vertigo greatly reduced?  (I hope I’ve recovered to a manageable state by then!)

I do so wish Stuart had some help.  He keeps getting mad at himself because he can’t get more done.  Taking care of me, looking for a job, cleaning the house, doing laundry, taking care of all meals, taking care of the pets…but he feels he’s not doing enough.

Yes, we need to get some things on eBay, the sooner the better, for Christmas.  (he has some very expensive Lego sets that could make someone very happy, and us a little more solvent.)  We also need to put the Honda up for sale.  That would help our finances a lot.  These things are important, but he can’t do it all.  Yes, he’s a super man, but he’s not Superman.  But you know, I can’t see Superman actually cooking and cleaning, or being a nurse maid.

I have been running a low grade fever, usually at night, but it’s not high enough to worry about.  I’m pretty sick of TV, and I can only look at the computer for so long.  Reading is alright, but again, I can’t do it for long.  Words just start running together.

Like now….

 

 

Why do I write? PFAM carnival

Sharon at Bed, Body, and Beyond is hosting the PFAM (Patients for a Moment) blog carnival this go round, and she asked, why do we write?  The carnival will be posted on December 7th, be sure to go by there and find out why other’s write, and what they write about.

Drawing Hands by M.C. Escher

I’m an artist, not a professional writer, I never really considered writing anything that was meant for others to read.  I kept a journal, off and on, for years.  Now and then, I still find little books with partially filled pages buried deep in a box, little segments of my life, meant for no one’s eyes but mine.

The first thing I wrote that was intended for other’s to hear (or read) was a poem I wrote the day my mother died.  This became the largest part of her eulogy.  A poem I still cherish to this day, it’s not professional, it’s not prize worthy, but it comes from my heart, and it helped me get through the first few hours of saying goodbye to my mom.

Memories of Mom and Me

I look around me and all I see,
brings back memories of mom and me.
The clouds in the sky; for hours we’d look,
picking out colors and shapes and books.
Oh, look there’s a snap bug – remember him?
a play thing for me and mom again
.A sea shell reminds me of a walk on the beach;
my diploma, a goal, she believed I could reach.
Let’s go to a movie – her favorite E. T.
then go to the park and swing with me.
An ice cream cone, a frog, a snake,
a Thanksgiving dinner we attempted to make.
All the things around me I see,
bring back memories of mom and me.
The people who loved her, I see in their eyes,
the love that she gave them was no surprise.
She had a heart as big as the world
and the soul of a little girl.
People who knew her will never forget,
because she affected everyone she met.
Reminders of my mom are easy to see,
for there are parts of her inside of me.

After that day, I filled many more journals with not just accounts of the day, but prose.  Still, only for my eyes, or to be shared by a very select few.

For years I’ve had health problems..too many to mention.  I wrote about this – privately.  Then a few years ago I found out I couldn’t eat gluten.  It appeared that this little ingredient in so many foods was one of the things making me sick.  I started learning a whole new way to eat, to cook, to shop, to talk to wait staff…ect.  I started a little blog to help me keep up with recipes, places I’d eaten, products I tried, all of my experiences being gluten-free.  At first it was private, I only wrote for my information.  Then I noticed other gluten-free blogs and thought others could benefit from the things I was learning…and that started me on a road to writing publicly.

My gluten-free blog was pretty popular, but I started having other health issues, and even found out I had another food intolerance.  Not only did I feel that the gluten-free blog no longer fulfilled what I needed, I didn’t think I could put as much time and effort into it.  So that blog had to change.

I started having more issues with Meniere’s Disease.  However, it wasn’t ruling my life…yet.  So I decided I wanted to start a blog about getting healthier.  Yes, I was going to take a year to focus on my health and fix things.  My body had other ideas, so 365 Days to a Healthier Me, changed to Picnic with Ants.

With this blog, I have thrived.  I started writing this blog to tell my story, living with chronic illnesses.  To get it all out before I exploded.  Then I found others who understood what I was going through.  I found support, and friendship, things I never expected to find, simply by writing about my life with all its struggles, dreams, hopes, milestones….

I found myself opening up and telling the nitty-gritty honest description of my emotions, and my diseases.  What my Meniere’s attacks are really like, how it feels to find that your husband is now your caregiver, how losing your hearing changes your life, how having chronic pelvic and hip pain affects your sex life, what it means to be bi-polar and (mostly) stable….I write about my life, and how I strive to live it to the fullest, with chronic illnesses.

I tell everything, in detail, not just to get it out, and find support or give support, I use it to explain to those who have no idea what we go through.  I have become an advocate for myself and for others with chronic issues.  I’m even considering writing a book detailing different people’s experiences living with an invisible illness.

There are many things I can no longer do because of my illnesses, one of the things I can do is write. Therefore, to put it very simply,
I write because I can!

Endolymphatic Sac Surgery – Recovery Day 2 – 3

Yesterday I woke with much more swelling and pain.  Still no vertigo. But started getting pretty dizzy, after taking pain meds.  There is such a fine line between taking enough so I can tolerate the pain, and taking too much to cause vertigo.  Often the  vertigo will come before the pain is under control.  I really hate having to take pain medication.  They make me feel drunk, and getting drunk when you have vertigo issues is not a good idea.

Had a great visit with a couple of friends last night.  It was so good to see them, I haven’t seen them in a long time, but we keep up regularly through instant messaging and email.  When they first got here, I was feeling pretty rough, I wasn’t sure I was going to be able to really enjoy the visit.  But I knew these friends would understand.

When they first arrived I had a little bite to eat and took a pain pill, my first in about 9 hours.  (I was really very hesitant after the way I was feeling that morning.  I do not like the drunk feeling.)  Luckily, the pain got better, and the visit was very nice!  Plus, my friend brought me a bunch of clothes to try.  (as I think I’ve mentioned before, I’ve gained a ton of weight this year, and I just don’t have anything to wear.)  I haven’t been able to go through them yet, but I’m just thrilled I will have something to wear that doesn’t feel way too tight.

I had a rough time going to sleep,  but seemed to sleep better once I finally drifted off.

Then I woke up this morning…what a difference.  I started to lift my head to get up to go to the bathroom, and the world started moving.  I put my head back down, things calmed, and I tried again…same results.  I decided to wake up Stuart to have him help me to the bathroom.  Again, I tried to get up, with his help this time, but the world went crazy!!!  I laid back down, and things still were spinning out of control!  Thankfully, it didn’t last long, but every time I tried to lift my head the same thing would happen.  I don’t know how we managed it but we finally got me to the bathroom…ahh…relief.  Getting back to the bed was rough, but once I was lying down again, things were much more stable.

The swelling around my ear was worse, but no fever,  no redness, and it’s not hot to the touch.  Thank goodness.

I decided to lay with my left ear down, to see if having the fluid drain some would help.  I could hear it gurgle, and feel it, but very little came out.  I slept for a while.  Then I had to go to the bathroom again.  Ugh.  I tried and tried, and finally I decided it could wait.  I feel asleep again.  Stuart decided to call the ENT on call at Duke, just to make sure this swelling issue wasn’t something to be concerned about.  She said, she thinks it’s just post-op swelling, she suggested ice at first, but we found out fast last time, ice on an open hole to the vestibular system is not a good idea. (Instant Vertigo!)  She also suggested elevating my head.  We slowly did this, first we got a thicker pillow, then added a pillow under my back (so my neck wouldn’t be at a severe angle), then added another pillow…now I’m at a slight incline, and the swelling has gone down quite a bit.  I’m still having bouts of spinning, and sharp pains shooting through my head.  Today has not been a great day.

This is so different from the first surgery.  I didn’t have this severe swelling.  (It has been swollen all around my ear, down my neck, sticking out about an inch.)  My ear drained well the first time.  I had a tube in my right ear, and it drained a lot.  I also have a tube in the left ear, and I know it’s open because I sneezed yesterday and felt the rush of air blow through it, but very minimal drainage.  I keep feeling fluid moving around in my ear, but only a very tiny amount is coming out.  I did have some very red blood come out this morning, not a lot, but it’s not that clear gooey discharge I had the first time.  I keep thinking, if my ear would just drain out, then I’d feel better.

The pain from the first surgery was much more intense after the feeling in my ear came back.  The damage to the cartilage was intense.   Question now is, if I’m this bad off now, what’s it going to be like when the feeling in the ear comes back?

I’ve started writing this post about mid-day yesterday, now it’s late Sunday night, and I’m just wrapping it up.

To sum things up, I feel horrible.  Today has been very uncomfortable.  I feel like I’m burning up with fever, but if you take my temperature I’m not.  If I move my head, the world moves….sometimes much, much worse than other times.

(Please forgive me, but I did not reread this post for errors.  I simply don’t feel well enough.  No picture either?  I really must not be feeling like myself.)

Tomorrow I should be posting for the next PFAM blog carnival hosted by Sharon over at Bed, Body and Beyond, submissions are due tomorrow by midnight, in whatever time zone you happen to be in!  (Luckily, I wrote most of my entry before the surgery, so I just have to touch it up a bit.)

The topic?  Why do we write?  Please think about sending in your own submission.  Sharon is great, and if you can’t make it by midnight tomorrow, drop her a line, she can probably give you a little more time.  The carnival will go up on her blog on the 7th.  So check out her call for submissions here: http://sharonwachsler.blogspot.com/2011/10/call-for-subs-pfam-blog-carnival.html

Surgery Over – Day 1 recovery

Getting ready to go home, after a long day!

Surgery went well.  I had an Endolymphatic Sac Enhancement Surgery.  After much searching, I found that different doctors do different surgeries and call it the same thing.  Basically had a Mastoidectomy.  (surgical removal of the mastoid process) with extra stuff.  Dr. Kaylie removes more bone so the sac can decompress (on its own) and will have more room to expand.  Leaving the endolymphatic sac and dura with no bone covering it.  However, most of this is under your ear, so it’s pretty protected.

Hopefully, this surgery will stop 70% – 90% of the vertigo caused by this ear.  I had this surgery on my right ear in April of 2010, it appeared to work.  But since I’m bilateral, sometimes it was hard to tell if my vertigo attacks were caused by my right or left ear.  Sometimes I could really tell, but since my hearing has diminished so much, and the tinnitus has gotten so much worse all the time, it makes it harder to distinguish.

I got home about 7:30pm.  Had to be at the hospital at 11:30am, surgery was to begin at 2pm, but it was delayed  until after 3pm because they had to give me a pregnancy test.  I told them there was no way I was pregnant even explained that because of my hip issues, we haven’t had “intercourse” in a very long time.  They asked again, how I could be sure I wasn’t pregnant.  I told them, “let me put it this way, there has not been a penis in my body for months, because of my hip pain, we get creative, but we haven’t had intercourse.  And I haven’t skipped my period.”  (they considered giving me a test anyway, but I peed right before they took me back, and since I hadn’t drunk anything for about 14 hours, there wasn’t any to come out.)  The nurses accepted this, but come to find out, if you are of child-bearing years you must have this test, hospital policy.  So I squeezed out some urine for them….and we waited….and waited for the lab to do the test.  So that delayed the surgery, luckily I was his last for the day so it didn’t put anyone behind.

When they decided I just had to have this test, Stuart joked, “Well, if you are giving birth to the messiah we want to make sure we don’t cause him to have birth defects.”  Only, Stuart would come up with that one!

Before leaving the hospital they did have my pain under control, but I was hurting quite a bit shortly after we got home.  I was sick to my stomach, (lot’s of anti-nausea medication), and pretty dizzy.  I slept some, but I woke a lot because of the pain.  I don’t think I took enough pain medication until about 4am.  Finally, it started to work.  I’d wake up in a few hours, and take half of a pain pill, this seems to have kept things under control.  One thing that was odd, I had this horrible taste in my mouth I just couldn’t get rid of.  Tasted like plastic and medicine.  I swear I tasted that same taste as they were putting me under.  I don’t remember this ever happening before.  It was gross.  I’m also having some crazy post nasal drip, and a cough.  Of course, my throat is sore from the breathing tube, but it’s better today too.

That big cup they put on my ear, filled with gauze and stuff, I swear it causes more pain than the actual surgery.  There was too much gauze and it pressed on my ear.  When you have a hole drilled in your head about the size of a 50 cent piece, you don’t really want to feel something pressing on it.  Thankfully, we got to take it off today, I removed all the stuff from inside, ewww, and just put a little packing back in, now it feels better, and I can sleep with out the worry of rolling over on that ear.  They said I could just take it off, but the ear will drain for some time.

I have a tube in that ear, so the drainage comes out the ear a lot.  This is actually an advantage.  My Eustachian tube is very sore, so I know it’s handling a lot of drainage too.  If I didn’t have the tube I think I’d have a much harder time with vertigo and pain.

My main nurse during pre-op, Janice, was amazing.  She was so caring, compassionate, and professional all at the same time.  She looked pained to hear what I had been going through.  I told her one of my mottos, “Life isn’t what I expected, so I’m just changing my expectations”.  I didn’t say this to be profound our anything, I said it to let her know, I’m OK with things.  Yeah, it’s hard, not what I expected, but I’ll make the most of what I have.  She was really stuck by this.  She said everyone could learn from that, so many people get caught up in the what if’s and can’t get past it to see what they still can be.  Right before I went back, she patted me on the arm, wished me the best, and said that she was going to remember to change her expectations as things change.

I was so humbled, and touched.

They had a hard time getting in an IV, one nurse tried, and even though she gave me lidocaine, it really hurt and it wouldn’t go all the way in.  Janice came in and took over, she had a hard time finding a vein, I remember telling her, I wished I could help.  She told me I was such a good patient.  She soon found a vein, and I didn’t even feel her stick me!  Amazing.   (about IV’s, I had another one in my other arm when I work from the surgery…wonder why?  I’m very glad I was out for that one, it was inside my wrist, a very painful place to get an IV.)

Everyone was very nice to me, and very professional, but Janice was exceptional.

Now, I’m getting tired, and a bit nauseous.  I’m thinking all this drainage, and post nasal drip, is making me sick to my stomach.

think I will take a nap.

For now, all is well…I may be posting a lot during my recovery.  I want to keep up with all my symptoms, so I may get a bit boring.  I thought of keeping a written journal of it, or on my calendar, but I know I’m much more likely to come here, and talk.

Thank you all for so much support!  You cannot imagine how much it means to me.