Tag: Fear

One Week until Surgery

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease18 Comments

As excited as I am about getting the Cochlear Implant (CI) next week, I’m nervous too.  I realized this yesterday.  I had appointments scheduled for this week and a dinner with friends scheduled for Sunday, and I told Stuart I just couldn’t do it.  I simply feel like there is too much stress on me right now.  With all the stress, I was making myself sick.

So what am I nervous about?  You would think I’d be nervous about the surgery, but I’m not.  I am nervous about the nurses finding a vein for the IV before the surgery, that is always an ordeal with me.   However, mostly I’m worried that the surgery will be postponed.  There have been so many delays, I’m having a hard time believing it’s going to happen.  I am expecting something to happen…I’ll get sick, my doctor will get sick or have to postpone for some reason….anything.

Now that I realize what has been bothering me so much, I’m dealing with it much better.  I know the surgery will happen.  If some unforeseen circumstance causes the surgery to be delayed , I’ll deal with it.  I know it will happen, if not next week as scheduled then as soon as possible afterward.  I still don’t want to be stressed out more by going to the dentist, having a mammogram, and having a dinner party.  These things will just have to wait.

Now, let’s talk a little about the surgery.  I’m pretty lucky really, about 90% of the surgery has already been done to me.   Since I had the Endolymphatic Sac Surgery, they don’t have to drill a hole in my head.  It’s already there.  All that has to be done is thread the wire from the CI into the cochlea, and place the implant.

There were 3 companies for me to choose my CI from, each had positives and negatives but really they were all pretty close.  I chose Advanced Bionics.  This is a very personal decision for each person who gets a Cochlear Implant, I felt that the Advanced Bionics CI would fit best in my life style.

This is what will be going in my head:

Cochlear Implant from Advanced Bionics. http://www.advancedbionics.com/us/en/products.html

I’m so happy that Duke is a two processor facility.  The processor is the part that you see on the outside.  Since Advance Bionics offers more than one processor, I was given the choice of getting 2 the same or one of each.  I chose to get one of each.  One processor is called the Harmony, it is a Behind The Ear type.  I liked this model because the T-mic (microphone) is located at the opening of your ear, so it will be easier to talk on the phone, and my ear will act as a natural buffer for noises, like your ear normally does.

Here’s a photo of the Harmony Processor:

Harmony Processor – photo from Advanced Bionics website.

The Harmony comes in a variety of colors.  I think I was allowed to choose 5, but it’s been so long now, I don’t remember what colors I chose.  We’ll have to wait and see after I get hooked up.  You can use regular hearing aid batteries, or rechargeable batteries, I’m sure you know which ones I’ll be using.  I was able to chose different types of rechargeable batteries, small and large.  The small battery doesn’t last as long as the larger one.  I ordered both.

The other processor I chose was the Neptune.  The Neptune is capable of being Water Proof, it’s the only CI that is Water Proof, so I can swim in it!  The Processor is not behind the ear (BTE) it can be clipped to different things: an arm band, your shirt, a lanyard, your hair…ect.  The microphone is on the part that fits to the head.

Here’s a photo of the Neptune:

Neptune Processor – photo from Advanced Bionics

I realize the photo above doesn’t give you a good idea of what the Neptune really looks like.  So here’s a few that will give you a better idea:

This photo shows the Neptune Processor. The thinner profile is not water proof, you must add a different piece to the processor to make it water proof, that is shown on the thicker profile. (photo from AdvancedBionics website)

 

This shows the Neptune on a child while swimming. The processor is hooked to the arm band. (photo from Advanced Bionics)
This shows the processor clipped in a pocket, and in a girl’s hair. (my hair is long, I could completely cover the CI in my hair if I wanted.)
(photo from Advanced Bionics)

With the Neptune I was also given the opportunity of picking all kinds of colors.  I know I picked a brown, and the lime green seen above, but I don’t remember the rest.  We’ll all be surprised when I get hooked up.

The CI will be turned on 2 weeks after surgery.  That will be the beginning of August, hopefully the 2nd or 3rd.

Anybody want to know anything else?

I know this is a LONG post, but it’s full of information, right?

We can make it, one day at a time. : )

Hard to Get Started Again…

On By WendyIn Chronic Illness16 Comments

I miss blogging, I miss my blogging friends….but it’s hard to get started again.

Now I think of things that have happened since I’ve been away that you don’t know about, and things that are going to happen….so much to talk about I’m overwhelmed.   Eh….maybe not so much.  My life really isn’t that exciting.

I went through a bout of depression, that knocked me off my feet.  By that I mean, I didn’t want to get out of bed.  I’d wake up and think, what reason to I have to get up?  I couldn’t think of a reason, and the sleeping side effect was not helping!

Vancouver Sunrise by Lauazee from DeviantART http://fav.me/d32s7vm

I know part of the depression started when Sandy died.  But the biggest problem is a bit strange….at least to me, my therapist says it’s normal.  I’ve been feeling better.  The Meniere’s isn’t bothering much at all since the surgery in December.  The Intracranial Hypertension (High CSF), is minor and under control with medication.  My migraines are not as painful, but they are causing vertigo often!  So much so that there is no way I’ll ever be able to drive again.  The Migraine Associated Vertigo (MAV) gives me NO warning.  I wouldn’t even be able to pull over to the side of the road, the world just goes crazy immediately.  I can’t even walk around the block by myself, or do things in the yard.  I tried one day, and it did not end up good.  So I’m stuck in our house, unless I have someone with me (meaning Stuart).  I know there is plenty I could do in the house, but when you can’t do things you want….well everything else kind of falls flat.

But I’m better.  Really.  It’s kind of funny.  I was watching Sponge Bob Square Pants and he was singing, “I’ve got an attitude of gratitude….”  And I realized I used to every day think about things I’m grateful for, and I hadn’t been lately.  So I started thinking about it, and I felt better.  Also we’ve been talking about fostering a dog, or perhaps adopting.  Sandy was a rescue dog, and we’ve been thinking that taking care of another dog who needs rescuing would honor her.  This has made me feel better about things, I really miss Sandy, and do NOT want to replace her, but the thought of honoring her by helping another dog….that makes me feel better inside.

Now that the sleeping has gotten back to normal, I’m feeling better about other things too.

We went to see the audiologist on Wednesday.  I picked out all the options for the Cochlear Implant (CI) that I want!  We expected to have heard from the insurance by now, but it’s seems to be a big old pain in the butt.  And all I can do is, wait patiently.   I’m not the most patient person!

Now, I’m started… let’s see if I can’t make a habit of this!

Sleeping

On By WendyIn Chronic Illness9 Comments

There is so much I wanted to accomplish during my little hiatus.  Paying more attention to the spiritual side of me, painting, working on some things in the house….

What have I been doing?  Sleeping.  A lot.

First I’ve been having much more Migraine Associated Vertigo (MAV), one day I had 2 attacks in one day!  That’s never happened before.  On those days I understand why I’m so whipped out, but there are many days where nothing has happened, but I feel like I can’t keep my eyes open.  I’m wondering if one of my medications is bothering me, but nothing has really changed recently.  I was taken off one drug, but nothing was added when this started.

On the 12th I had the Pneumovax -23 vaccine.  It’s a vaccine for 23 different strains of pneumonia.  Including one that causes meningitis.  This vaccine is required for anyone who is getting a cochlear implant.

Unfortunately, I’m one of the people who had side effects to the vaccine.  Including extreme soreness of the injection site, and my whole arm, fever, swelling of injection site, redness of injection site, diarrhea, and extreme fatigue.  Normally, all of the side effects subside within about 5 days, but some people feel some of them (especially the fatigue and malaise for 14 days or more.)  I think I’m in the more category.

This has been an experience.  Most of the symptoms did disappear after the first few days.  The injection site is still a little pink and warm to the touch, but I can lift my arm, not fever, the extremely gross diarrhea didn’t last long, I’m grateful to say.  (too much information following) – One day I was having loose stools, nothing serious, but I felt so exhausted, so I decided to take a nap.  While I was asleep the diarrhea struck, it didn’t even wake me up!  What a mess.  That was a scary thing indeed, for a long time I was afraid to go to sleep, but I was so tired.  We decided to put a pad under me on the bed so I knew if something happened I wouldn’t ruin the bed, then I was finally able to go to sleep.  But I had 3 times where I had to RUSH to the bathroom before sleep finally came…and I’m happy to say the extreme diarrhea stopped.

Still I’m tired.  It’s been 19 days.  I don’t think this is just the vaccination.  I think it’s a combination of MAV (yes I’m having it almost daily, luckily this vertigo isn’t as intense as my vertigo from the Meniere’s.  It is easier to get through.), some medication, and probably just some of the stress from everything.   Plus, maybe some of the medication.

I am putting together a post about my journey on my way to getting a Cochlear Implant (CI), mostly it’s a lot of waiting.  Next week I tell them which processor I’ve chosen, and I find out where we are with the insurance.  I’m really hoping this will happen soon.  I’d like to have it turned on by my birthday…what a present that would be!

In the next post, I’ll explain more about what is going to happen, which processor I’ve chose, and a bit more about the process I had to go through to get qualified for the CI.

Until then, I think I’ll take a nap.  After all I only slept 12 hours last night.  : )

Personify Your Health – #HAWMC Day 28

On By WendyIn Chronic Illness1 Comment

Prompt for today….Personify your health. If your health focus were a person – what would they be like? Describe them. Visually, emotionally, physically, and personality-wise. What kind of person are they?

I’m again using one of the Bonus Prompts.  I liked this one more than the original prompt.  However, once again, I took a different take on it.  Recently I made a mask showing what I looked like on the outside to most people, and then on the inside I showed my true self.  I felt this answered all the questions put forth in this prompt, but with a little creative flair.

Some of you have already seen this, but I think it’s worth repeating, and for those who haven’t, I hope you enjoy!

Outside of Maxk. by W. Holcombe
Inside if Mask
by W. Holcombe
Mask Inside Top
W. Holcombe
Mask Inside Bottom

I Keep Writing Because…. #HAWMC Day 24

On By WendyIn Chronic Illness7 Comments

Bonus Prompt: I keep writing because… Start your post with this sentence and, as the title says, keep writing. Free write for 15 minutes without stopping and see where it takes you.

(today’s original prompt was to post a Health Mascot.  My dog Sandy is my mascot, but I couldn’t right about that today.  She died April 18th, one day I’ll write about what a brave, and wonderful dog she was, how many health issues she had and over came, how she was as the vet often called her, “a Wonder Dog”.  But not today.)

photo from Flicker Sharing by earthunderheaven (to find more of their work click on the photo.)

I keep writing because…recently I keep writing because I am determined to finish this challenge.

Actually, I’ve begun to wonder, why I keep writing.  I know why I started, I know I have made some good contacts, friends, and my heart has been here. This blog has really helped me through some tough times when I felt no one else was listening.  I’d write, just to write, and I found there were others out there, others who felt like I did, others who needed to have that contact too.  Now, I’m hurting so much.  I’ve had so much loss this past year.  I felt I dealt with each one, I was strong, and positive.  I was told I was the most positive person someone knew.  I was proud of myself and how I was looking at life.

Then another diagnosis came earlier this year, and it has been hard to deal with.  I couldn’t be that positive about it.  I’m still a bit in shock from it, and simply not sure how to look on things positively.  I’m larger than I’ve ever been, and the doctors just seem to be ignoring it, yet they tell me my triglycerides are high, and I’m borderline high blood pressure….ect….but they all say, don’t worry about the weight right now, you have to focus on this.  I’m afraid I’m on my way to diabetes.  I read all these books on nutrition, cut out soda, all High Fructose Corn Syrup, snack on nuts, cheese, fruit, veggies, eat at home more, cut out gluten….all these will help you lose weight…but I do all of that.  so why can’t I lose weight?  I need help, I’ve been to a nutritionist, no help.  Most don’t even know what fructose intolerance is….I know more than most of the “professionals”.  I’m grieving for the loss of what I used to be, what I used to look like.  I now have no energy, can’t exercise because it will raise my CSF pressure, I can’t walk for long because of my hips, I can’t even enjoy sex.

I’m grieving because I lost everything that I gained early last year.  I can’t drive again…but I have a cute little car.  I can’t be a foster parent, even though we went through all the classes had all the references…everything…but no, I can’t because it wouldn’t be fair with my health issues to bring a child into this.  And frankly I don’t think I’d pass the physical now.

and worst of all I lost my best friend, my little baby dog.  A HUGE part of me died with her.  I have to find a way to make that part live again.  To put the pieces of my life back together, even if some of the pieces are missing

Why do I write? Because I need to.

But I also need to take a break.

I may write sporadically for a while to let you know what is going on, but I need to take a break from the internet.  I won’t be reading other people’s blogs as much or commenting as much.  I need to take some time to focus on me.  I may write about it, I may not.  right now I’m simply trying to figure out how to get past all the grief of things I’ve lost this year, or how to grieve without losing myself.  I need to focus more on the spiritual side of me.  I need to make some huge decisions.  My husband and I need to grieve over our Sandy together, and figure out how we will carry on with our family now that such a huge part of it is gone.  We may end up moving.  As I said a lot of decisions….and a lot of needs.

But yes I will write again.  Because I must.

End 15 minutes…plus a little to put in the photo.  : )

Needing Strength – Writer’s Choice- #HAWMC 23

On By WendyIn Chronic Illness12 Comments

Today’s Prompt: Health Activist Choice Day 2! Write about whatever you like.

Strength by Carnegriff at deviantart.com

Needing Strength


The losses, so many losses

my mind struggles to comprehend.

The year has been a blur

I cannot keep up with the grief.

My life has been about strength,

never staying down for long.

Now I am broken, the pieces are scattered,

missing pieces never to be found.

The light in my soul is barely a flicker,

the flame will not light the way.

Until reached, no one knows what their “breaking point’ is,

now I know mine.

I can lose many parts of me,

always finding the strength to change and carry on.

Add the loss of a love so dear,

and I cannot find the strength.

If not for the love of another,

my life would have no meaning.

Grief, anger, love, tears, memories…

all things we share, with each loss.

We lean on each other,

each needing the strength.

The strength to live with,

all the losses.

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.

Dear 16 Year Old Me – HAWMC Day 10

On By WendyIn Chronic Illness15 Comments
Me at 16.

**warning to readers….this is a graphic letter.  Things I really wish someone would have told me and helped me with, some may be offended by the frankness.  There may be some major mistakes in the writing, I tried to read it over, but just couldn’t.

Dear 16 year old me.

Hi Wendy….You won’t believe it, but I am now almost 50 years old.

I know you are confused. I know it’s hard to believe that I could be writing you from the future, but please just sit back and listen. I hope to help make these coming times just a little bit easier.   Please know, I love you, with all my heart.  You will go through times that you don’t like yourself very much, but know you will.  I’m just hoping you can start a bit sooner.

Recently you have been very depressed, and confused. Some days you are very happy, a bit euphoric even, and other days you don’t think you can carry on. Everyone thinks you are going though normal teenage hormones, just growing up. You are, but you are also dealing with a bit more. You need to make someone listen. Your mother has always been your best advocate. Sit down with her, talk honestly. Tell her just how depressed you have been and that you need to see a mental health professional.  I’ll be blunt, you have Bipolar disorder. Don’t worry, you can be treated. But hopefully, you can catch this much earlier than I did the first time around. In my time line you went through many hard years and many heart breaks. You still live with the fall out from those times. If you can get help now perhaps your life can go much smoother.   (much easier.)

If you can’t, there is one thing I suggest…STRONGLY.  Be careful with your sex life.  You will feel, once you are “soiled”, it isn’t worth the fight. It is. YOU ARE!  You will lose your self esteem. You will lose so much. When you get into therapy, finally, you will have a good therapist, but she will not understand. She will acknowledge your past problems with abuse and see you think a man will only care if you give yourself to him. She will say. Sex is ok, but only if you really want to do it. You will often feel that you really want to do it. Please Wait. Wait many times. Wait until the relationship is so much more. Do not jump into a sexual relationship until the relationship is more than just sex. Please take this more seriously than you can believe. It will change your life!!!

Stay close to your mother. Give her a break much more often than you do. Take her off the pedestal. She can’t read your mind, STOP being so passive aggressive. It carries on to other relationships and you don’t need that. You lose her much too early. She encourages you and stays by your side through everything, but unfortunately she doesn’t live to see you completely stable. Savor the years you have. You will be so very close, but you do put her through many worries. Try to lessen those for both of you.

You will start to have some health issues. Hearing issues, vertigo….you think you are having food poison many times…there are many breaks between these sicknesses. You are heading toward a hard fight with a hearing disorder that will cause a lot of balance issues. There really isn’t anything they could do if you found out earlier. So don’t sweat they you don’t find out until later. But if you find out earlier, it might help you in your career.

Dare to be braver. Work harder on your art if you REALLY want to. Don’t be so scared to fail. You will only have a few years to be able to work at this. So if you fail, it’s not a big deal.   But if you succeed, and I really think you could, think of how you would feel about you!  I believe in you.  Looking back, you could have done so much more.  Work on your muse!  Find what inspires you the most!  (oh and in college…start out as an Art Major. add in Art Education, but don’t waste time, if you do you will run out of financial aid before you know it and will not get the education you deserve.

You will have some health issues that change your life….so you change your life to go along with it.  You still have a good life.  You have a wonderful life, even with everything that you go through, you find a way to make your life meaningful.

You do meet the most wonderful man, and have a joyous life with him…but it won’t happen until you are in your late 30’s, you marry at 41. Do not worry. It happens. Don’t fret. And don’t think there is something wrong with you. Focus on your happiness.  This man will stand beside you through all your health issues.  You will have a better relationship than you ever thought imaginable.  He is worth waiting for.

Focus on YOU.

Study things you want to learn.
Dive into your ART.
Study Yoga…you will love it.
Become as healthy as you can, you will need it later.
Take care of you…And trust your heart…don’t listen to those who are just looking for fun for the moment.
Hopefully, if you listen to this, and get treated early, you will have an easier life.

Don’t take things so seriously….however, when you believe in something, don’t let others pull you away from your beliefs. In that same vein….do not get too caught up in other people’s beliefs without really looking into them. Make sure they are what you believe deep in your heart, and the that the facts are sound.

Question everything.
Love Deep.
Laugh Often.
And Cry Less.
Look for Beauty.
And appreciate Life.

From your future self, who hopes things turn out a bit differently.

With unconditional love, always and forever.

wendy

My Afternoon….

On By WendyIn Chronic Illness6 Comments

This whole brain thing is interesting.  One moment I’m doing pretty good, then, like today, I started feeling a bit woozy, not unusual.  I ask Stuart to help me move upstairs.  He got my computer and stuff said he’d be back to help me.  I thought, I’m not that bad yet, I can go upstairs.  So I start.  I get to the top of the stairs, and my head pounds…this seems to happen a lot, my pressure must raise when I climb stairs.  Then I walk a few steps and start to lose control over my legs.  I just kind of flop like a rag doll.  My head flops, my arms flop, my legs don’t want to listen to me….My body just doesn’t want to listen.  I think I almost killed Stuart, he did not expect to hold all of my weight all of a sudden, he expected to just guide me because I was staggering.  We got me to the bed, I decided I have to pee now.  Of course, I am headstrong, and I have more control over my head now, and little more control over the rest, and I knew if I laid down, I wouldn’t be getting back up.  So I’m determined with minimal help, I’m going to pee.  He holds me, “No. I DO IT!”  He lets go…I slide down…he grabs me, I grab for the sink….”I DO it!  OK….I inch my way there….and grab the wall and can’t pull my pants down.  Uhhhhh….*little bitty voice now*  can you help?  He does, and I pee.  Yay!!!   I kick my jeans off (we’d had an appointment earlier), we get me back to bed.  A little easier, my control is coming back, and get me into a t-shirt.  I lie down, and he says, I’m taking blahbla *yeah not hearing well* down stairs I’ll be back *at least that’s what I got*  OK.   So a little latter, I call out.  “You upstairs?”
He comes in.  I say in a very calm voice.  “I’m having vertigo, I thought you should know, just in case.”

So that was my afternoon.

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?