Month: September 2011

The Ball’s Rolling now

On By WendyIn Chronic Illness, CSF, Medical Tests, Meniere's Disease6 Comments
Ball Rolling in Hole by W. Holcombe

Saw Dr. Kaylie on Tuesday.  I have an ear infection.  Again.  Who knows why.  He thinks the tube is beginning to irritate my ear because it’s trying to come out…and blah, blah, blah…I didn’t really listen to that part.  Partially because I couldn’t hear him, and partially because he started the sentence with, “I don’t know”  When a doctor says I don’t know…well, I have a hard enough time trying to hear the things they really do know about.  I let Stuart listen to the rest.  : )    However, he doesn’t think this infection has anything to do with my on going symptoms.

I started feeling like I was going to have a full blown, down on the floor, throwing up Meniere’s attack as we got to the clinic.  I’d already taken some meds before we left the house because I was feeling it a little bit.  So I took some more.  I did not want to fall out at Duke’s Clinics.  It’s hard enough in the privacy of your own home, but I just can’t imagine the horror if I fell down in the hall there writhing on the floor throwing up.  Ugh…just the thought.  I know, I was in a medical facility, and they would try to help as much as possible, but let’s face it, I would have been mortified.  So, I took more meds, and Stuart wheeled me in to see Dr. Kaylie.  When he saw me he looked so sad.  He’s such a sweet, compassionate, and unbelievably smart doctor, I just wanted to be able to get up and say, “don’t worry I’m fine, you fixed me all up.”  Of course, I couldn’t.  But I do believe that he and Dr. Gray will do everything they can to make it better.

He was very sympathetic, but I really need to see Dr. Gray.  He is treating my ear infection, but he can’t really do anything about the pressure problems.  I have to get it tested again!

Dr. Gray also called on Tuesday.  Her scheduler called the next day and I have an appointment on October 17th, unless she has a cancellation and they can get me in there sooner.  We really can’t move forward until we know if my pressure is high, like they suspect.

My symptoms aren’t classic for having high pressure, but I do have some.  However, I also have some of the symptoms for having low pressure.  It’s almost as if my pressure keeps randomly going up and down…but that can’t be happening all by it’s self…can it?  Guess I’ll find out.

In the mean time, I’m most comfortable in bed, in a reclining position.  I’ll try to go down stairs to just move around and get a different bit of scenery, but I don’t last long.  When the tinnitus gets too loud, I can’t stand any other noise.  I’m not as comfortable on the couch, and I’m not really walking all that great on my own.  I can usually get from the bed to the bathroom, but that’s only about 4 feet, then I can hold on to the walls/sink…  (plus I do have a walker right beside my bed to help if I need it.)  If I’m downstairs I have to use my walker or Stuart to get to the bathroom.  (Not all the time, but most of the time.)

It is driving me crazy that I can’t cook.  I love to cook, and with my food intolerances, it’s hard to cook for me, and even harder to get take-out.  So we’ve been eating a lot of the same things.  Easy things that my husband can cook.  I’m very grateful, but I miss my kitchen!

Oh, Stuart has discovered the slow cooker.  He made a delicious roast this week.  I was so proud of him.  he even put in a bunch of potatoes and shallots that came from our garden!  (we didn’t get much from the garden, but the things that grow underground did great.)  Growing organic vegetables is hard!  We learned a lot of what not to do…hopefully, we’ll do better next year.  Unfortunately, we’ll be missing the fall planting season since I’m stuck.  Being home bound sucks!

I am keeping up my spirits by drawing, and reading.

I don’t think I’ve mentioned it, but Stuart’s father is getting married!  November 5th is the big day.  I’m going to have a mother-in-law…wow!  (Stuart’s mother died 3 months before we were married.)  I really, really, really want to go.  They live in Tucson, AZ.  That’s a pretty long flight from RDU (Raleigh/Durham International Airport), and there’s always a lay over somewhere.  I’m very, very lucky that I have a couple of friends who have graciously offered to stay with me if I can’t go, so Stuart will still be able to go and be his father’s best man.  As much as I want to spend time with these friends, I really hope I can go.  Not only do I want to meet my new family members  (she has 3 children and 4 grand children!).  I want to see my dear friends who live there, and my niece.  (who will have a baby brother in January).

So everyone send good healing karma, and cross your fingers I can get in for an appointment with Dr. Gray earlier than expected!  I really need her to fix me up quick, so I can make it to the wedding!  (plus, Stuart and I really need a vacation!)

I think the Doctors are Listening

On By WendyIn Chronic Illness, CSF, Medical Tests, Meniere's Disease, Pain3 Comments
What? image by Wendy Holcombe.

thank you to everyone for the love and support you gave me after my last post.  You help me more than you can know.  It’s so good to know I’m not alone, and there are people out there who care and are sending me such good karma.

All of you would be so proud of me.  I wrote Dr. Gray an email and told her exactly how things have been going.  Really, you would be proud!  I didn’t sugar coat it at all!

She wrote me back yesterday (yes, on a Sunday), and said she was so very sorry.  She will call today, and we may have to try different treatments.  She mentioned me coming in and reducing my pressure.  She would actually take some out.  She mentioned I may need a shunt…not sure about that.  I have a friend who is getting one in November, she has high pressure and they can’t keep it regulated with medication, so they are giving her a shunt.  I don’t know enough about it to tell you, my friend has explained it, but it just sounds scary to me.  Here’s a link to an article on Wikipedia that explains it in more detail. http://en.wikipedia.org/wiki/Cerebral_shunt

Today, I’m trying the pills to lower my pressure again.  Dr. Gray sounds certain that it’s too high.  (remember, the last time I took this medication for a few days I ended up having a bad Meniere’s attack, and she thought my pressure was too low, so I was taken off the medication…it’s so confusing.)  But she sounds certain now that I don’t have low pressure.  That I’m in that rare margin of people who have high pressure that causes “blow outs” and then when she sees them they have low pressure…she patches them…and the cycle starts over.  I’m looking forward to hearing what Dr. Gray has to say.  Well, I won’t actually be hearing her, since I can’t talk on the phone, but Stuart’s pretty good at that.  I’m eager to find out how different the two myelograms were.  If most of the leaks this time were in different spots, perhaps that’s why she thinks I’m having “blow outs”.

On top of everything else, yesterday afternoon after about 2 hours have having VERY LOUD tinnitus my left ear started to hurt.  Then it started to drain a clear fluid.  I do have a tube in this ear so it’s easier for it to drain if it gets too much fluid.  It didn’t pour out, but I had to keep cotton or a tissue in it or it would run down my face.  Like it did while I was sleeping….yuk.  Today the draining has pretty much stopped, and the pain is much less, but Dr. Kaylie wants to see me tomorrow.  He thinks,  “You may have had an otitis media.  You should come in tomorrow and let me take a look at it.”  So I have an appointment with him tomorrow at 3pm.  (FYI, in case you don’t know, otitis media is a middle ear infection, I looked it up.)

I’m looking forward to hearing what Dr. Gray has to say.  Well, I won’t actually be hearing her, but Stuart’s pretty good at that.  I’m eager to find out how different the two myelograms were.  If most of the leaks this time were in different spots, perhaps that’s why she thinks I’m having “blow outs”.

I was so scared after reading Dr. Gray’s email about a possible shunt, and then having that fluid running out of my ear, I didn’t sleep at all last night.  I finally went to sleep around 8am, and got up at 11:30am.  Funny, I’m not exhausted today.  But it doesn’t take much energy to just lie in bed all day, so I’m not using up much energy.

Hope you enjoy the ear doodle.

Glad I don’t own a Gun.

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain4 Comments

Yesterday was one of those really, really bad days.

It started off fine, I went downstairs, had some breakfast, was watching some cartoons.  And the noise in my ear started, and got louder, and louder.  My head started pounding.  I went to lay down, and it just got worse and worse.  I was screaming to please make it stop, that the doctors don’t understand, that I couldn’t stand it.  I was dizzy, and felt like I was going to throw up at any moment.   I told Stuart, if this didn’t stop I would make him hate me, because I’d have to stop it.  I knew then that if I had a gun I would have blown my head off just to make it stop.  (NO, I don’t want to kill myself, but the pain and noise was so unbearable.  If you’ve never been there you just can’t imagine.)  I’ve dealt with horrible, mind splitting headaches, and I’ve dealt with the deafening tinnitus. (yes, I know that’s a strange thing to call it, but if it was coming from the outside of my head instead of inside, that’s how it would feel.)  But dealing with the two together, is just too much!

It hurts me so much to see my husband wanting desperately to do something to help, but he can’t.

I took two Vicoden (Hydrocodone), a Valium, and Phenergan.  Finally, it started to ease.  In no way did it go away, but I wasn’t writhing in pain any longer.  We propped me up on an incline to try to ease my pressure.  It seems if I’m too flat it hurts worse, if I’m up right it hurts worse, but being on an incline helps…sometimes.

I wrote an email to Dr. Gray last night.  I wanted to make sure she knows how desperate I am right now.  I sent a copy to Dr. Kaylie too.

There has to be a way to make this better.  I was so much better for so long.  I believe, I can be that way again.  But I know now, that I will never stop living in fear that it will come back.  On any given day, at any time, I could have my life fall apart…over and over again.  Dr. Kaylie calls it “Random Punishment”, you never know when it will happen, but you know it’s coming.  I’ve had it explained to me, that it’s similar to serving in a war.  You aren’t under fire all the time, but you are constantly aware that it could happen at any moment.  That does things to a person’s mind.  Talk about anxiety!

This piece is still in progress, but I felt like it was appropriate for today.

So I will have the courage to enjoy every moment I have when I’m not enduring that hell.  I will never take a day for granted.  One day at a time….just one day at a time.

What are you reading? Banned Book Week

On By WendyIn Life10 Comments

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

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

 

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

Sponsored by the American Library Association (ALA):

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

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

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

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

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

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

I Went Outside Today…

On By WendyIn Chronic Illness6 Comments

Woo Hoo!  Today I went to the grocery store with the hubby.

I had some iffy moments, but I made it without any major incidents.  At one point, when I got out of the car I dropped something, I picked it up and when I started to stand back up I almost fell flat on my butt!  Thank goodness the car was there for me to grab.  It was an icky feeling, a bit like those “drop” episodes, I just felt like someone pushed me.  (OK, Mr. Meniere’s you cause enough trouble, don’t you be pushing me around!)

Bought more groceries than we have in a long time.  So glad there is food in the house, and I’m hoping I can cook some this week.

I love my husband dearly, and appreciate EVERY thing he does for me, but I must say, he has very limited menu ideas.

I’m very proud of him for learning how to cook a rotisserie style chicken in the slow cooker!  It’s quick, easy, and it’s real food.

I don’t blame him for having limited menu ideas, it’s hard to cook for me.  None of this, very little of that, here add some of this so I can digest it better…..what a pain in the butt.  Even I have problems, and I love to cook.

Still having some pretty icky days.  Meniere’s attacks are coming much more often.  Luckily, all of them have been mild except for that one day.  Headaches are now worse when I stand up.  If my pressure is low again, I just don’t know what I’ll do.  It’s obvious just patching me up is not doing it!  Still hoping I’ll level out and will start to feel “normal” again.  But if I must have more treatments, we’ll be discussing doing something different.

I hope they are learning a lot from my case, and can help others with less of this going back and forth.

Was just looking at my other blog Create To Heal.  I started it on August 13th, with a plan to create something every day.  I just counted up all the creations I’ve posted – 63!!  I think that’s a bit more than once a day, hehehe.  (so I’m not feeling so very bad for that one day I missed.)

Thought you might enjoy this one:

This is my favorite “doodle” so far.  (using many Zentangle patterns.  I drew a circle first, but broke out of it!

 

It’s the Little Things.

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain13 Comments
I created this the night after my bad attack. (W. Holcombe all rights reserved)

It’s the little things that make me happy right now.  I felt so proud of myself today.

I spent the entire day out of bed.  I even got my meals for myself…well, all except breakfast, Stuart was making that for me when I got up.

The meals I got for myself were just left overs, but I did it!

I walked by myself, and cleaned myself up…all by myself.  (yes, these are things I haven’t been able to do without help.)

I filled 5 pages in my sketch pad today.

My internal clock is still way out of whack.  I can’t seem to get to sleep before 3 or 4am. …and then don’t get up until about noon.  If I try to get up earlier so I can go to bed earlier, it just doesn’t work.  Either, I feel like crap all day, and risk having an attack because I didn’t get enough sleep.  Or, I still can’t get to sleep until the wee hours of the morning.  Ugh.  Guess I’ll talk to my doc about it next time.  I hate taking something to help me sleep, but perhaps I could take something for a little while to get my clock back on schedule.

I hope I have more days like today, and continue to feel better.  It’s been a rough road lately….but I’m making my way down it.

I feel so guilty.  I’ve told so many people about the success I was having after having my CSF leaks fixed.  I know of a few people who sought out the treatment because of me.  I’m not saying that I’ve given up, or that I think things won’t get better.  But right now I’m not sure, and I’m just afraid I made it seem too easy.  I think I’ve always let everyone know this is an experimental treatment.  However, it was working so well for me.  I was normal again.  I just want for all of us who have that feeling…being normal.   Did I give people false hope?

Even if this treatment ends up not working for me, I have always said, I hope they will learn something from this, and can help others.

Once again, I feel at a loss for the right words to express how I’m feeling.

I’m full of guilt, fear, and anger, yet…I’m still full of hope, and feel like I’ve found a part of me that has been missing for a long time.

I hope you guys understand.

Attack Time

On By WendyIn Chronic Illness, CSF, Medical Tests, Meniere's Disease, Pain15 Comments

On Saturday I woke up with my ears feeling very full.  (they normally feel like I have wet cotton in them, but this was worse.)

I noticed I kept having to ask my husband to repeat himself.  (even more often than usual)

These should have warned me, but I didn’t listen.  For the past few months, it hasn’t been unusual for me to have these “warning signs” with out the full fledged attack that follows.

But I was feeling pretty good!  We decided we’d make a trip to the grocery store.  I got dressed, and was sitting on the couch while we finalized our shopping list…and the world moved.  I got some Valium and Phenergan in me, but decided a trip out wasn’t the best idea.

Things settled down, and I settled in for a day of drawing and relaxing.  (forced relaxation, but relaxation all the same)  Stuart decided he’d mow the lawn.  (perhaps I should say, our mini-jungle….it’s been a while since it was mowed, and it’s rained a lot.)  He put his cell phone in his pocket on vibrate so he could feel it if I should call and need him.   I was drawing…relaxing…then I moved…I can’t remember what I was going to do, perhaps go to the bathroom, do something for the dog, get a drink?  I have no idea…but I started to feel bad…really bad.

I called Stuart’s phone…nothing.  I called again…nada.  I knew there was some medication on the bar in the kitchen, if I could just get there.  I grabbed my walker and started on my journey…of just about 8 feet around the couch and to the bar.  I didn’t make it.  But I made it to the window and Stuart saw me.  He walked in the door, and I hit the floor.  He got me some medication, but it was too late. (who knows it may not have worked this time anyway.)  I didn’t feel that bad, really.  I felt like I was having a mini-attack, but would be fine.  Until I started to get off the floor.  I couldn’t do it.  I tried to crawl to the couch.  That wasn’t happening either.  So I lay there behind the couch clutching the carpet…and I panicked.  I tried to stay calm, but the world was going crazy, and I couldn’t get off the floor.  Then the vomiting started….and a headache from hell!  Stuart said, “I’m calling an ambulance.”  I said “NO!”  (oh please, not again, a trip to the ER where they can’t do much…or don’t do much…just not again.)  Stuart was concerned my CSF pressure was dropping too low.  I told him to call Dr. Gray.

Luckily, the pain and the attack didn’t last very long.  (less than 2 hours I think)  I dozed off for a couple of hours.  When I woke up I was so tired, wanted to brush my teeth, and felt like I smelled like vomit.  We cleaned me up and put me to bed.  That’s when the terror set in.

I was absolutely petrified to go to sleep.  I didn’t feel quite right, and I didn’t want to wake up having an attack.  But it was more than that, I don’t understand it really, but I was scared.   I was also very afraid of being alone.  If Stuart moved, I panicked.  Was he leaving?  Were was he?  I was terrified, and it wasn’t rational.

Since then, my headaches have fluctuated between moderate to severe.  The day after an attack, I always have digestive issues.  I end up in the bathroom a lot.  Every time I had to go, my head would explode.

Stuart and Dr. Gray emailed back and forth, and talked on the phone.  She said to give it a few more days, but she thinks I may be a rare case.  Someone who really has high pressure, but has “blow outs” and by the time she sees them their pressure has dropped because of this.  She treats them for the low pressure, only causing more “blow outs”.  (Please note that I’m getting all of this second hand from Stuart, so I can’t explain it very well.)

I have a question for my fellow Meniere’s sufferers.  When I end up throwing up because of an attack it’s much worse than when I’ve thrown up because of other things.  (like the flu, food poisoning…or having a bit too much to drink..)  It’s violent.  I gag so much, I can’t breathe, it’s so scary.  My stomach hurts so much, and I constantly feel like I have to go to the bathroom too.  This time I had such violent spasms that my jaw popped.  It was so painful, my mouth was trying to open further than it should.

So my question is:  Does anyone else feel that when you get to the throw up stage during an attack that it’s worse than other times you’ve had to throw up?

I swear it’s so horrible I would do anything to stop it.  All I want to do is die during these attacks….just make it stop.

Why can’t they fix us?  Why can’t they at least figure out how to control the symptoms?  I know my doctors are working on it…but I’m having a hard time just watching life pass me by while I wait for someone to help me.

Don’t get me wrong.  I’m very grateful that I had nearly 5 months of being virtually symptom free.  This is the first severe attack I’ve had since January!  I’m very happy about that, and it does give me hope.

I am also so very grateful that I have the support of my husband.  I have such respect for those of you who have to endure this without help.  I had Meniere’s before I met Stuart, but it’s gotten much worse in the past few years.  I have been through attacks alone.  It was terrifying…and at the time I didn’t know what it was.

Stuart really helped during this attack simply by talking to me the whole time.  Telling me how much he loves me.  Repeating soothing words over and over.  I honestly think this attack would have lasted longer if he hadn’t been there to help calm me down…and take care of me.

 

Hearing Tests and finding me again.

On By WendyIn Medical Tests, Meniere's Disease4 Comments

I thought some of you might be interested to see the results of my past two hearing tests.

There’s a lot of information there.  The biggest thing that makes it hard, is the word recognition.  They simply can’t fix that with the hearing aids.  So, according to the latest test, I’m recognizing about 84% of the words I’m hearing in my right ear…and that’s if they are at the right frequency.  I’m not deaf!  Some things are difficult, but hopefully this is temporary, and if not…I’ll learn.

We still have much hope that things will change.  My doctors believe the hearing in my left ear will get better.  We’ll just wait and see.

I know many of you are concerned for me right now.  I’m doing OK.  Really.  It’ll  take time to process everything  Yes, my life’s plan will need to change.   I’m trying to look at things differently, not looking back and thinking of what I’ll miss, but look forward at what I can accomplish.

Last night I was writing and drawing and thought I’d share something I wrote:

Journal Entry Sept. 8, 2011

What started me on this journey?

The need to write and draw is now overwhelming to me.

How did I ever give this up?  How did I lose so much of ME?

***Hey You!***

Yes, You – That girl you look at in the mirror every day —

Welcome Back!

p/s  Please don’t leave again.  I’ve missed you.

Thank you all for so much for all the support.  Yes, I’m going through a rough spot…but with the support I get from you…my dear friends…it’s easier.

I never dreamed I’d feel such an out pouring of support from people I’ve never met in real life.  Many of you have reached out to me when I’ve needed it most.  I only hope in some small way, I can give to you as you have given to me.  thank you.

“We Have to Wait and See if…”

On By WendyIn Chronic Illness, CSF, Medical Tests, Meniere's Disease, Pain6 Comments

I started writing this post a few different times, but nothing I say seems to come out right.

I don’t want to sound all pessimistic.  I’m not…I’m hopeful…but I’m tired….and a bit frustrated.

I saw the audiologist, had a hearing test, and saw my Oto. , Dr. Kaylie, on Tuesday.  (August 6th)  It was a very emotional day, and I feel like all the answers I have are still…wait and see….

My hearing test was dismal.  My right ear is pretty steady, my left ear is now pretty useless.  Yes, even with the hearing aid.  It is hoped that it will come back, but it’s a wait and see kind of thing.  I scored 0% on the word recognition in my left ear.  This was my “good” ear before.  Now the volume is down like the right ear, but the sounds are so distorted I can’t understand them.  It’s heartbreaking really.

Finally, I asked Dr. Kaylie, “do you have any idea if I will continue to have relapses?”  He said no, “We’re in uncharted territory here.”  I was pretty sure that’s what he’d say.  But it still stung.

I explained that we were in the process of getting licensed to become foster parents, but without knowing, I just don’t see how we can.  Dr. Kaylie, looked very sympathetic, but he couldn’t say much.  He did say, since things improved so much before, he believes it will again.  That my pressure hasn’t stabilized yet.  He has every hope that my hearing will improve.   (for some reason, I’m not as hopeful.  I guess I’ve heard it before, with my right ear, and it didn’t get better, but at least it is stable now.)

If I take out my hearing aids, I can’t hear anything but very loud noises.  I can not make out speech.  Just a few months ago, I could still hear, and understand most words.  If I wear the left hearing aid, it’s just so I’ll have the volume control to work.  (button on right hearing aid is up, left is down)  There’s really no reason to wear it.  So did I waste $2000?  maybe…We have to wait and see if my hearing improves….

Will I be able to drive again?..We’ll have to wait and see if the disequilibrium gets better….

Headaches?….we’ll have to wait and see when your pressure levels out.

So I’m in waiting mode…..and I don’t like it!

I will post my hearing test for you to see soon.  (right now I can’t get it to come up on my computer…..I do have a love/hate relationship with technology.)  I will post the test from earlier this year, and the one from Tuesday.  You can see how much things have changed.

I posted a photo I created on my Create To Heal Blog, that I’d like to share here too.

Fractured Ear (Hearing)                                                                              by W. Holcombe all rights reserved.

During my hearing test I started to cry…just a little…I could tell things were very bad.  Then the audiologist tried to adjust my hearing aid to help…it didn’t work.  I held it together.  Until I got to the waiting room and saw Stuart, then I broke down.

I have to admit, I’m scared now.  More scared than I think I’ve been in a very long time.  If the hearing doesn’t change in my left ear, and if my right ear’s hearing diminishes…I won’t be able to hear.  It’s already so hard, just hearing parts of things.  Missing so much.  Dr. Kaylie says I’ll never be deaf, that he would give me a cochlear implant.  But, I’m scared.

And, now once again, I have to change my plans for my future.  I have to come to terms with the knowledge that, I will never be called Mom.  This is something that’s going to take me a bit more time to process.

So….We’ll Wait and See.

Please take the time to check out Kelly’s series on Fly with Hope this week.  Today, (August 8th) is my story.  “I want to live! But I don’t feel like I am!”

 

Also, take a minute to drop by Phylor’s blog and check out the playlist from other chronic bloggers.  A lot of great music, and a lot of inspiration!

And as always.  Thank you so much for all the support you give me!

 

Suicide Prevention Week – What do you do when you are in crisis?

On By WendyIn Chronic Illness, Meniere's Disease, Pain, stress5 Comments

Kelly, over at Fly With Hope is doing an amazing series this week about migraine and suicide.  (She also talks about how those with chronic illness, and  chronic pain are in crisis.)

In her words:

“My goal is to decrease the stigma of the discussion of suicide so that we might be more supportive in the chronic Migraine/chronic pain community on this issue.”

“Please check in every day as there will be posts with (anonymous) contribution from the chronic Migraine and chronic pain community on topics related to chronic Migraine/chronic pain and suicide including how to cope when you are close to the end of your rope, personal stories from those who have been there, on suicide and faith, a post especially for loved ones (family, friends, caregivers) and links to other blogs/articles on Migraine and suicide.”

One of the contributors to this series is me.  I don’t mind anyone knowing, and some of you may recognize that it’s me when you read it.

Please know, if you are ever in that state, if you ever feel like you just can’t cope….or even before you get there….Please feel free to get in touch with me.  Email me!  I will gladly give you my phone number and we can chat….or if I’m not hearing well, we can IM or text.  Just know you are not alone.

I’m a firm believer that everyone with a chronic illness should have counseling.  We need to be better equipped to deal with our situation.  My husband and I see a therapist together.  It has made this intolerable situation, much more …well…tolerable.

But if you need a friend to talk to…I’ll always be here.  Many of you have touched my life in such a way I couldn’t begin to put words to it.  After such warmth, love, and compassion from so many of you…I have promised to always be there for those who need me.

Again, please check out Kelly’s blog this week, this should be a very moving series.  Kelly has chronic migraines, and Meniere’s.