My dear Sandy…I will miss you so.

On By WendyIn Chronic Illness15 Comments

Dear Sandy,

From the moment I saw you as a gangly little dog who had been abandoned in a dumpster you stole my heart.

It has been over 19 years since that day, and I’ve loved you every moment.  You have listened to me in good times and bad.  You gave me a reason to live when I thought there was no other.  I knew you depended on me, and many times I depended on you.

You have always been much more than a dog in this family.  From the moment Stuart first walked in the door, you gave your approval.  You met him at the door, this stranger, as if you’d known him all your life.  It was love at first sight, and he instantly loved you.  I knew from the way he greeted you with such affection, this man might just be a keeper.

When were got engaged, you were part of the celebration.  We had pictures taken, of course you were a part of them.  You would have been in our wedding if it hadn’t been so far away.  However, you were not forgotten.  My maid of honor gave a most touching speech mentioning how she was so lucky to be present when I met my first true love – you.  Yes, you came before Stuart in our wedding toast.  My dear, dear Sandy you are so very loved, and always will be.

Over the years we’ve been through a lot together, you have persevered through so much.  But this last attack on you was more than your little body could stand.  Since Friday you have had such a hard time.  The seizure was hard on you.  You seemed to be better when we brought you home.  The next day you were tired, but seemed to be coming around, back to yourself.  We started you on the seizure medication, and you got worse, and worse.  For the last 2 days it has been very hard on all of us.  It seemed you didn’t know us, or know where you were.  You had to pace, fast, you kept running into things….it was a pitiful sight.  We tried to calm you, but it made you more anxious.  After 3 trips to the ER Vet yesterday we decided to stop the seizure medication, hoping you were just having side effects.  You had a peaceful night at the vet’s office, and this morning they thought you looked much better, until you got home.   The pacing started again.  You had no idea who we were.  We took you to our vet, hoping for some help.  We didn’t know how long it would take for the medication to get out of your system.  We were heart-broken to find out it was already.  We knew then that it was time.  Your quality of life was not as it should be.  You couldn’t go on as you were.

They don’t know if the seizure caused your temperature to go too high, or if the cancer had metastasized in your brain possibly causing the seizures in the first place.  All we know is your brain wasn’t working properly.  You were not happy.  You were miserable.

I hope it helped that we were with you, holding you as you drifted off.  I hope you could understand just one last moment how much we love you.  How much we hated to see you go, how much we will miss you.  Both of our hearts are breaking.  But we thank you for bringing us together.  If you hadn’t approved, Stuart and I wouldn’t have lasted.  But you accepted him in our little family.  He was one of us.  Thank you for making sure I wasn’t alone.

You have been my friend, my first true love, and my constant companion for 19 years.  You have been a special part of Stuart’s life for over 11 years.  I hope you will always know how much you are loved, not just by your family, but by everyone you met.  You are a special dog, who will be missed very, very much.

Goodbye my dear sweet puppy dog, there will always be a place in my heart that will belong to you.

April 18, 2012  11am

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Random Phrase from a Book….Junk Stores! #HAWMC 18

On By WendyIn Chronic Illness6 Comments

Today’s Prompt: Open a Book. Choose a book and open it to a random page and point to a phrase.  Use that phrase to get you writing today. Free write for 15-20 without stopping.

I’m always reading.  One book I’ve been reading on and off for a while is I Know What I Like (a visual autobiography by) Vincent Price.  (one of the coolest people who ever lived!!!  Just saying!!)   I’ve had the book for a few years now, and normally I fly through books, but this book I’m savoring, and enjoying every morsel of it.

I just opened the book closed my eyes and pointed to a phrase…..

local thrift store interior - Pennies for Change, Durham, NC

“The junk store still holds a ghastly fascination for me.”

I’ve always enjoyed shopping in thrift (or junk) stores.   Yard sales were also a fascination for me.  I would go with my friend and her mother to scour the neighborhoods for the best yard sales, my friend would begrudgingly go, I eagerly awaited the search for the newest treasure.   Some days I may find nothing of interest.  Normally I found at least a book I just had to have!  Often I came away with treasures I just knew others would love and hold dear, often to be disappointed when they were less than impressed by my “used” gift.

As I got older I depended on the thrift store to supplement my wardrobe, and I loved it!  No I couldn’t afford the fancy clothes many of the kids wore at the private school I went attended, I was lucky to get a few fundamental pieces, then I discovered thrift stores!  Why would I pay $50 for a name brand sweater I could find for $2?  Having used clothes never bothered me.  I was picky about what I bought, and no one would have known if I didn’t tell them, but I bragged, and still do.  Someone will complement me on an outfit and I’ll say, “I paid $12 for this whole outfit, including the shoes!!   In high school it wasn’t cool, but in college….times changed.

A photo of a chair close to my favorite chair, but mine swiveled!

I was an art student.  I bought all my clothes from thrift stores, loved to create my own look!  (wonder where that ability went?)  I often bought old paintings and white washed them and painted over the old painting.  Cheap canvas!!  I found many things to use for art projects!  For the artist, a thrift or junk store is a paradise.  My furniture was mostly thrift store items.  I loved them.  A bright yellow half circle leather chair from the 1970’s – that was my favorite.  I remember needing storage and an end table so I bought a bunch of old suitcases, cleaned them up, stored things in them, stacked them up and that was my table!  I still think that was a cool table.

Ahhhh, I remember my roommate bought a mink coat for $10.  It was such a wreak, and we were all a thither over the idea that someone would kill animals for a coat, but they had, and she felt that she was saving this poor pelt.  What a mess.  I don’t know what she ended up doing with it, I hope a good burial, but I’ll never forget that poor, poor mink coat we found.

I’ve found some gorgeous art books, I have a huge collection of old art books that have the prints in them.  They are gorgeous.

Now, before we buy anything new we go to the thrift store first.  I still buy a lot of my clothes used.  Little house hold gadgets….

I have found that most thrift stores are not the treasure houses they used to be, it’s more “trendy” to shop in thrift stores now.  I haven’t seen good used furniture in our local thrift stores in a long time, and when I do, the prices are way too high.

Still, I love to go on a treasure hunt in a junk or thrift store, I do not believe the fascination will ever die for me.   (as long as I take an allergy pill first, whew the dust will get you!)

“Ummmmm, honey, think we can go thrift store shopping this weekend?”

Lesson Learned the Hard Way – #HAWMC Day 17

On By WendyIn Chronic Illness4 Comments

Today’s Prompt: Learned the Hard Way. What’s a lesson you learned the hard way? Write about it for 15 today.

When I read this prompt I knew exactly what I’d write about, but not exactly sure the story I’d tell.

photo from http://www.terrygivens.com

I think with my health, the Greatest Lesson I Learned the Hard Way was that Doctors Do NOT always know, they CAN’T always fix you, and they WILL lie.

At 10 I broke my arm, it was a silly way to break a bone, so no one really thought it was broken, until the next day.  My shoulder, and my arm down to my elbow was black and blue.   Amazing. My mother felt such guilt because couldn’t believe it could be hurt that bad.  You see, I was climbing up the side of a hill, not a big hill, I grabbed a root that was sticking out to help pull me up, and it let go.  I fell back.  My feet were only inches from the ground.  I fell on my left arm.  It was my RIGHT arm that was hurting.  No one could understand.  No one but me, you see, I heard the bone snap.

We got to the Navy clinic, and they performed x-rays of my arm.  It caused quite a stir.  At one point, I counted 8 doctors in the room trying to get a glimpse of my x-rays.  They were confused.  Was my collar-bone broken too?  What was all those lines?  We better send her to a specialist.  So my whole side was immobilized, and we were sent to the big Navy Hospital, downtown Charleston, SC.  My mother hates to drive in traffic.  She didn’t get her license until after I was born.  But my father was at sea, she had to be brave, and be the only parent.  I remember being in much more pain during and after the x-rays.  Could they not be a little more gentle with a 10-year-old child?  and maybe give her something for pain?

So we arrived at the big Hospital, to this little girl, it was the biggest building I’d ever seen.  Again, there were many doctors looking at my x-rays.  Many having no idea what they were looking at.  Finally, saying this is very rare in such a young child.  And then taking my mother out in the hall.

That should have been my FIRST lesson – Doctor’s KEEP SECRETS.

When they returned my mother looked a bit confused, stunned, and scared.  I was told I had broken my arm.  But I also had a bone cyst.  A fibrous mass in my bone instead of a solid bone.  It was “NOTHING TO WORRY ABOUT”.  However, we needed to keep an eye on it, and I’d have to have a special cast.  I couldn’t have a whole cast, just a partial cast, because the cyst “needs to breathe” – I will never forget that phrase, I was only 10, but I thought, so I have some foreign thing living in me that has to breathe on its on?  What really was happening, was the tumor would make my arm swell and go down and swell and go down…ect….so a regular cast would not work.  And this was in 1973, so those fancy hard velcroed on casts weren’t around yet.  (actually, the very first one of those was a prototype made for me! after my surgery, isn’t that cool?)

So I broke my arm 5 times.  They kept saying they were watching it, and I wasn’t supposed to be doing anything strenuous because I could break it.  Um, Someone opened a door into me while I had a cast on (was days from getting it off) and broke my arm.  I don’t think I was being strenuous!  I never learned how to play any sports, I wasn’t allowed, I am so uncoordinated and so dumb about any sport activity.  I’ll be asked to play soft ball, I’m so embarrassed, I’ve tried to play, and volley ball…ect.  I can’t do it.  I simply have no eye hand coordination and I’m like a 2 year old learning to play a game.  But I digress.

Finally, I was almost 16, I had stopped growing, it was time to operate.  The bone in my right arm had not grown at all in the past 6 years!  They took some bone from my left hip, shaved it off from around the tip of the pelvic girdle.  (I know what you are thinking, she has chronic pelvic pain, I don’t think it’s from this, most of my pain if on the other side.)  They opened the upper right humerus of my right arm and scraped out the mass, and packed it full of the hip bone pieces.  So they had to fuse together.  (yes, my father says I can literally say, I carry my ass on my shoulder!)

So then the lies start to come together.  While I’m in the hospital I started to hear things.  Like the tumor that was removed.  And the malignancy.  I was given medication via IV, that had a little radiation symbol on it.  I got very sick.  And I was in the hospital for over a month.  I was never told the whole truth.  You know I’m not even sure my mother was told the whole truth.  I do think my father was.  It was that kind of times.  Tell the father, let him decide what to tell the family.  But from the things I got a hold of in the hospital, and the questions people answered before they thought about it….it sounds like, I had a tumor.  Yes, this I do know, I did hear the doctors say that…well, over hear.   I also over heard from the nurses when they thought I was sleeping.   It was mostly benign, but had some malignant cells.  I handled the chemo and radiation treatment well.  “It’s a good thing they got it when they d

That quote still haunts me.  They waited 6 years for my bone to grow.  If they had operated earlier, I probably would have had NO CANCER.  I would not have lost so much of my childhood.  I would have had a solid bone, yes it would have been shorter, so what!  It still is!!!  And I still have pain from it!  They still didn’t fix it.

And remember I was never told this.  I heard it all second-hand.  Not long ago, I tried to get my records from the Navy Hospital.  They said I needed my father’s authorization since he’s still alive.  If he was dead, it could even be harder from what I’ve heard.  I asked him to get them for me.  “For what, you don’t need that.”  I tried to explain, I’m having a lot of medical problems now and any information from my past might help my doctors now.  “I don’t believe that, it’s too much trouble.  I don’t know why you’re always wanting to bring up the past.”  Okay????  Where did that come from?  but I guess no medical records.

So my Lesson I Learned the Hard Way…Doctors do not know everything!  Doctors can’t always fix everything. and Doctors will Lie, or in this instance, at least keep things from you.

However, I have had them lie to me at different times….that was a Lesson Revisit.

Pinboard – #HAWMC Day 16

On By WendyIn Chronic Illness5 Comments

Today’s Prompt: Pinboard. Create a pinterest board for your health focus. Pin 3 things. What did you
pin? Share the images in a post and explain why you chose them.

I chose to pin a few more than 3 things, and probably could have done more.  However, I only pinned photos and artwork I created.  I chose these images because I felt they were closer to me and expressed what I wanted to say many times.

Here are the photo’s I shared on my Pinterest Board, titled, My Illnesses….pluses and minuses.

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What’s Your Style? #HAWMC Day 15

On By WendyIn Chronic Illness3 Comments

Today’s Prompt: Writing with Style. What’s your writing style? Do words just flow from your mind
to your fingertips? Do you like handwriting first? Do you plan your posts? Title first
or last? Where do you write best?

Is this my style??...What's my style???...
(distorted image of Mona Lisa by W. Holcombe)

I was recently talking with a friend about STYLE.  People who have it, those who don’t….and really, does it matter?  Does it change a person?  In writing, does it change the end result?  I wonder?

I have noticed the way I write has changed over the year.  Not where I write or how I start, but the words I use, the way I express myself..those things have developed I think.

But that wasn’t the question.

My writing style. For the most part, when I have things on my mind I want to talk about I sit down and just write.  Straight on the post.

I guess I plan a little, I always know some of what I’m going to say but usually my posts just flow from me.  I don’t normally hand write anything down first, unless I’ve had a lot on my mind, or I’ve been writing poetry.

The title is often the hardest for me.  For some reason I seem to think it needs to go first, but sometimes I change it before I post.

I always like to include an illustration.

I normally write in bed….or on the couch.  Always on my laptop.

When I’m writing a usual post I just write as if I were talking to a friend or group of friends sitting here with me.  I try to always be open and honest and write from the heart.

Is it a style?

I don’t know.  It’s just who I am.

A Night at the Emergency Vet

On By WendyIn Chronic Illness14 Comments
Triangle Emergency Vet. http://trianglevec.com

Night before last I didn’t sleep well.  By 7pm last night I was ready to go to bed.  I couldn’t sleep.   We decided to watch a show on the computer curled up in bed together.  Then about 9pm, it happened.

Stuart jumped up, “Oh no, Sandy!  Wendy she’s doing her thing again!”  I was very confused, what is “her thing”?  I jumped up and turned the light on, she’s having a seizure.

No coughing, no signs anything was going to happen, nothing.  She’s lying there with her back straight, legs straight out, and mouth tight.   She has already wet herself.  But she’s breathing.  Hard.  I keep talking to her, no response.  I keep petting her and talking to her, and trying to get her to respond, nothing.   I’m very good in a crisis, when I can do something, I started to panic a bit this time.  What am I supposed to do to help?  Finally I did get a little bit of a response by touching her tongue.  She moved her head a bit with that, annoyed, but that was it, but it was enough to show me she was still in there.  Stuart’s calling the Emergency Vet telling them we’re on our way, and getting dressed.  I’m not leaving Sandy’s side.  He’s all ready, I’m going in what I have on, sleep pants and an over sized t-shirt.  I grabbed a sweat shirt because it was chilly, and threw on some sneakers.  Out the door.  I was a mess and reeked of urine, and did not care.

Sandy on the couch.

We get there, and were so sad because they were a bit busy.  Not something you want to see at an Emergency Vet on a Friday night….a lot of people, most of them crying.

Sandy was acting a bit better, but she was still very lethargic, and confused acting.  They took her right back.

This was the worst seizure she’s had, and they seem to be getting closer.  They did blood work, but couldn’t get a urine sample.   (I don’t know why, but Sandy hates to pee at the Vet’s office.)   She was dehydrated, so that could have been the reason for no urine.  They give her fluids, but wanted the urine to be before they diluted it.   The blood work showed signs that she was dehydrated (this is typical after having a seizure), but it did have a couple of red flags about her kidneys.  However, her potassium was normal, and the vet said if she was having major kidney problems the potassium would not be in the normal range…..whew.   She thinks most of the tests that were out of range were because of dehydration.  They monitored her body temperature.  When dogs (I don’t know about humans) have a seizure their core body temperature rises.  Since Sandy’s seizure lasted so long, or at least her coming out of it lasted a long time (it’s very hard to tell when her seizure’s stop and her recovering, but not being able to move, starts), they were concerned her temperature was too high for too long.   Soon they gave her a lot of fluids and sent her home with the instructions….”Keep her calm tonight and keep an eye on her.”

At 12:30am we were back home, Sandy was so excited!  You never would have known anything was wrong with her!!!   She wanted to run everywhere!  “Keep her Calm”, when a vet tells me that I really should ask, “how?”   We did out best, but she had to see every inch of the house, and tried to run everywhere!  Normally, if she’s excited we can go outside for a little bit and she will calm down.  She starts getting all those good smells she has to slow down for, but last night?  Nope.

Sandy playing in her bed.

Today, she’s acting fine.  It’s so hard to believe I was sitting with her last night in tears telling her I understood if she had to leave us, that I never want her to be in pain.  I kept telling her how much I love her, and that everything is alright.  Trying so hard to sound calm.  But just dying inside.

We talked to our vet today.  She is starting Sandy on a seizure medication, and a special diet for renal function.  She does have bladder cancer, we need to keep her urinary system running as smoothly as possible.

Watching someone you love get older and change is so hard.  There is so much about her that is different from the Sandy she used to be.  I’m glad the Alzheimer’s medication works, but it hasn’t cured it. She paces a lot.  Around and around the house.  Since the first day I got her she hasn’t wanted to be in a different room from me when I’m home, that’s different now.  She often will go to bed in the middle of the day.  Just leave us, and go to bed.  She is much more of a loner dog, I’ve wondered if she is trying to prepare us in her own little way for a day when she won’t be here.

Last week, I was looking at her and thinking….she’s not the same dog.   Don’t get me wrong, I still love her dearly, and she’s still MY dog, but there is so much that’s different.  I miss my Sandy.  I swear she knew I was feeling this way because she started to do little things that were more from her normal personality than she has in a long time.  Cuddling up with me, and I’d love on her and when I’d stop she’d jerk her head back to look at me, “why’d you stop?”, it is such a cute move….so Sandy.  She’s been more affectionate, and lying in the sun more….. oh just young Sandy things.   Not old dog, Sandy things.   I love them both, really!!!  I’ve just missed my young Sandy a bit….because let’s face it.  She’s 20 years old.  That’s 100 years old for her.  She can’t live forever.  (but don’t tell her that!!!)

Dream Day – HAWMC # 14

On By WendyIn Chronic Illness1 Comment

Today’s Prompt: My Dream Day. Describe your ideal day. How would you spend your time? Who
would you spend it with? Have you had this day? If not – how could you make it
happen?

My dream days now are much different from they used to be.

Today I take one day at a time.  If I have a good day, I try to make the most of it.

Falls Lake, Durham, NC
photo courtesy of http://www.city-data.com

The other day is a good example.  I woke up not feeling the greatest, but I rested, and in the afternoon it was nice and warm and I felt better.  So I asked my husband if we could take a ride that afternoon.  (I’m a very lucky person, my husband works at home and can work flexible hours.)  We decided it would be a nice day to take an afternoon ride with the top off my little yellow VW bug.  (even though I can no longer drive, we decided to keep my car as the family car because it gives me such joy.)  We went for a ride by the lake, and I saw a huge hawk which flew very close to the car.  It was a beautiful sight.  We drove through a little town and had a drink and snack and came home.  I got a bit too hot and we had to put the top up and turn the air on, but it was a lovely afternoon.  I didn’t feel well on the way home, but I hated for our afternoon to end.

Later, after we got home and I rested a bit, I was delighted that I felt better and was able to help with dinner.  Something I so rarely get to do, and I love to cook.  This day I was able to make nearly the entire meal with minimal help.  A good day indeed.

So this was a wonderful day.  A “dream” day.

photo from Hilton Garden Inn, Kitty Hawk, NC

It doesn’t have to be the perfect “dream” day to make me happy.  However, I still dream of going to the beach with my husband, I love the ocean.  Smelling sea air, feeling the ocean breeze and the warmth of the sun on my face, having long walks on the shore, and sitting on a porch reading as the sun disappears over the horizon.  Eating fresh seafood caught straight from the ocean, and return to our place with naughtiness on our minds…  Hopefully, days like that will happen again.  However, if they don’t, we are very determined to live every good day to the fullest.

Who knows on my next good day, it may be a day he has off, and we can actually take a picnic down to that lake, and take a little walk.  It may not be the ocean, but it would be a pretty body of water (and hubby loves the woods more than sand I think.)

I may be having a rough time with things right now, so I think it’s even more important to make sure to acknowledge every good moment, and celebrate every day…no matter if it’s a perfect “dream day” or not.

10 Things I could not live without – #HAWMC Day 13

On By WendyIn Chronic Illness4 Comments

This has always been a bad list for me.

Do I assume my necessities are taken care of, like food, water, shelter…ect?  Do I assume I have my husband and my pets?  Because if I need all of that, then there goes the 10 things right there!

I was once asked, “You were stranded on a desert island, you were allowed to take all your necessities, you forgot one important item, what would you freak out about?”   My first thought….”I hope it wasn’t my toothbrush!”   Strange thing, if I’m stuck and could only brush or floss, I’d floss.  so what was I thinking?  Take care of those gums!  Silly girl!  I guess I should have said, drinkable water, or something smart like that, but I kind of assume you could find that somewhere.  Am I naive?

So for this question, I’m going to assume I have everything that is necessary for life….I mean to sustain life.  And all my medications and such, including my hearing aid, and glasses. But only list those things I feel I couldn’t live without, even though technically I could.  (and I’m not including my loved ones, or my dental hygiene products, we know how I feel about that, I’m going to assume those are all included, this wouldn’t be much fun if all you read was a bunch of list about, oh I’d take my husband, my cat, my son……)….So let’s have more fun than that.  Yes I think I’ll be listing more, what semi-luxuries could I not live without!    (Please Note!  The Main thing in my life I could not LIVE without is my HUSBAND!  But anyone who knows anything about me, knows that!!)

In no particular order:

massage - photo image by http://www.laurawardmassage.com/
  • I said no particular order…but this one is NUMBER ONE!!   Massages from Kelly!  She has literally save me in many ways!  I honestly believe I would have had hip surgery again if it wasn’t for her, and I think my headaches, and neck pain would be much, much worse.  When we moved to Durham, I had to give up a wonderful massage therapist I was seeing because the drive was just too hard on me.  I went for a long time with no massages.  Then I decided to surprise my husband with a massage as a thank you gift for the amazing things he does for me.  We randomly found this place and randomly found Kelly.  She has researched my conditions, has worked with me, and come when I’ve needed.  She has gone way beyond what is expected of a massage therapist, and their prices are very reasonable.  I could not live without Kelly.
  • Hot Baths – often with Epsom Salts.
  • Ice Packs – for those really bad headaches
  • My emergency pack for when I have a Meniere’s Vertigo attack.- (filled with bottles of water, wash cloths, plastic bags, emergency meds, a card explaining what is happening….)
  • My cell phone for emergencies. – (we must be in a place where I have reception, and I can charge my phone, and I have the charger…no loop holes here OK?) I can’t talk on the phone any longer, but if I need help, it has an emergency button, or I can push one button and call my husband.
  • My computer, and a way to power it and hook it up to a network, and anything it needs with high-speed internet. (yes, I’m being thorough there, I’ve seen too many movies where people make a wish like, I want a computer, then have no way to run it.) – I must have access to the internet.  all my friends are in my computer.  : )
  • Monkey, Monkey, Monkey – or just Monkey to his friends.  Yes I have a stuffed animal who calms me when the Intracranial Hypertension or Meniere’s or pain from any of my chronic conditions – migraines, pelvic pain, GI issues….ect….   When any of this gets too much. Monkey is there to dry my tears to hold my head. to be a neck pillow, to just be my Monkey.
  • Peppermint Lotion. – OK, yes we are getting in to my luxuries now.  At night my hands and feet get very hot.  So I use peppermint lotion to cool them off, it helps me go to sleep.
  • Burt’s Bees Lip Balm….or possibly a different lip balm that has peppermint, I don’t really like that Burt’s Bees sold out to Clorox…ewww, but they are still made here in Durham, but they aren’t guaranteed gluten free any longer. However, I had a stock pile, so I think mine are still from the old manufacturing practices….anyone know of a good peppermint lip balm that is all natural and gluten free?  Oh but back to why this is a necessity…..I use it every night before I sleep, my lips are hot and dry, and I cannot fall asleep with them feeling like that, I just can’t…so I must have a peppermint lip balm.
  • Vick’s Mentholatum Vapor Rub – oh, yes I know this is an odd one.  But again, in my go to sleep routine.  I have a hard time with post nasal drip.  I will start coughing in my sleep, and making little hacking noises.  If I put a little of this under my nose, it usually takes care of it.  It opens my nasal passages and no more drip.  If I still have it, I take a Benedryl, and it’s all gone. But it’s wonderful that this makes it so I don’t have to take another pill a lot of the time.

You know I thought I’d have trouble with 10….but I could go on….however, I think I’d be going into the territory I said I wouldn’t.

Oh NO!  I didn’t mention any of my art supplies.  I could go NO WHERE without a drawing pad and pens!!! NO WHERE!!!  What to leave off????   Or do I assume that were in with the necessities of life?  They would be for me you know?

Now that will take some serious thought.

Wendy just write…. #HAWMC Day 12

On By WendyIn Chronic Illness2 Comments

Prompt for today Stream of Consciousness Day. Start with the sentence “_______”just write, don’t
stop, don’t edit.Post!

(written April 5th)

image courtesy of http://www.thechicagobridge.org/

“Wendy” just write, don’t stop, don’t edit. Post!

Stupid computer can’t figure out what I want to do Can’t get the dang program to close…ugh….can’t make a slideshow…I know I’ve done it before…why do I want to throw it out the window.

Heard from friend was nice, but it’s hard. Can’t do so much. Other friend told me I wasn’t a good friend because I didn’t keep in touch and didn’t make time for her when I was feeling good, she’s the busiest person I know, I looked back in my emails, the not getting together wasn’t all my fault..I apologized. A lot. But the reply I got back seemed so cold, so sterile. I just couldn’t put more of me out there…..not with everything, I just couldn’t. She wanted so much more than I could give. I want more..but when you can’t just chat on the phone, and people don’t like to email or take your written words wrong it’s so, so hard. And to see someone in their prime doing everything you will never be able to do and everything is about that, and all I can think about is my illness, what is left? I miss her…I miss them…but I have nothing….I really feel I have nothing to offer.  What can I offer.  I can’t even hear them to talk to them.  I focus on if I can get out of bed, brush my teeth, walk outside….maybe if I’m lucky a little more….what can I talk about to people who have a full life? a job, children, acitivites, friends, interests?  I’ve been so consumed with just staying alive the past 2 years. Well that’s stretching….Well no it’s not!

This past year I’ve been through so much…and I’ve persevered, and now I’m mad at me!!

I was told I was better, and would be better!!! Damn the doctors! How could they do that to me!

I had 5 months of a new life! A better life! No vertigo. I was moving on. I started to become a Foster Parent, I started to drive, I got a CAR! I was making a life….I didn’t think it would be ripped out from me.!  I was so busy….I didn’t think it would end…

After those 5 months I went through 7 more lumbar punctures SEVEN with 5 or 6 sets of patches down my spine. I spent about 6 months in bed with not only CSF problems but gut troubles too. I’ve gained nearly 60 lbs. I feel old, fat and ugly. I don’t like me any more….yet I do. I do. I’m proud of the way I’ve handled things.

I’ve had 2 in depth surgeries on my ears. Surgeries that took my ears almost completely off and drilled to my brain, and left holes in my skull the size of a 50cent piece.  But they worked…I think.
I’m now told I have high CSF pressure…Intracranial Hypertension. Serious, rare. My hearing in my “good” ear is almost gone.

Now I’m falling apart….and I’m angry at myself about it!!!?????

I’ve been so resilient, so adaptive, so….I can handle it.It may not be what I expected…so I’ll change what I expected…NOW….I’m just plain scared and mad.  I thought I was mad at everyone, I’m taking it out on everyone….But I’m so angry at me. I’m angry I’m not bouncing back, and I’m angry I’m not more tenacious, and I can’t do more and damnit….I’m angry that my body is doing this to me!  I’m angry I can’t lose weight….I’m MAD AS HELL!

I’m angry I’m sick! And I have to deal with it. I have been dealing with it. But right now…I’m not doing the best with that.  However, I know me, and I will. I’ll get it together, and get myself another lease on life.  Life is good.

I have such a good husband. It can’t be all bad. I must think of the good days.

My Sounds of Silence – #HAWMC Day 11

On By WendyIn Chronic Illness18 Comments

Today’s prompt, Theme song. Imagine your health focus or blog is getting its own theme song.
What would the lyrics be? What type of music would it be played to?

I happen to be losing my hearing due to Meniere’s Disease.  So music is very hard for me.  I can’t really hear it even with my hearing aid, sounds very tinny.  However, I have tinnitus all the time.  At this time I’m deaf in one ear, and have fluctuating loss in the other ear, the other day I was having a particularly low hearing day.  Deciding my hearing aid really wasn’t doing any good, I decided to just leave it out.  That day, I read this prompt.  I thought, I couldn’t have a song.  Then I thought, but even when I’m deaf I will hear sounds all the time.  NO, they won’t be sounds I want to hear, but I will hear sounds.

I talked with a friend of mine, Vincent Morrison,  who is a sound engineer.  He agreed to help me record something similar to what I hear every day. Please know, my tinnitus changes A LOT.  It varies constantly.  But these sounds always seem to be around.  We did put in some of the startling sounds that just come out of no where that scare me.  We didn’t make it as loud as it can be, I did want people to be able to listen to it.  I wanted to represent that my tinnitus can be softer, a medium tone, and I would say deafening…but that would be silly wouldn’t it?

So on a better hearing day, my dear friend came over and he tried his best.  I must admit I’m not the best person at describing sounds.  I am so touched to have this recorded.  Trying so long and so hard to explain just a little of what I hear has been so hard….this is my song.

“My Songs of Silence” – sound recording by Vincent Morrison

Artwork by Wendy Holcombe – “Fractured Ear”