Tag: hearing loss

Finally I understand….they really aren’t bad people.

On By WendyIn Chronic Illness, Cochlear Implant, Disability, Meniere's Disease6 Comments

I wrote this a few days ago, but did hit enter.  I wanted to read over it and make adjustments….but I had a vertigo attack..and another, and another.  I’ve been having many vertigo attacks since November 1st.  They come on fast and the spinning is very fast.  They last anywhere from 30 minutes to 3 hours.  Yesterday I had 6 of them.  I can’t be on the computer very often the rare occasions when I can.  I can’t read much.  I don’t know if this is Meniere’s or Migraine Associated Vertigo, or a combination.  My guess is a combination.  We have calls in to both my doctor at Duke and the doctor here….yes the doctor here….I’m desperate…and read below you will understand why I’m giving him another chance.

So I don’t know when I’ll be back.  and I didn’t read this over.  thank you all for supporting and hanging in there with me.  You are the best!

So the people at Charlotte Eye Ear Nose and Throat are not so very horrible.  Stuart talked to the head of the Audiology department today.  She said that the doctor I saw has spoken to her twice about making an exception to see me.  Shockers!  Also there seems to be a pretty good reason for them to not see people from different clinics.  They don’t get paid for it.  Yep, it’s in their contract that they don’t get paid for MAPping cochlear implants that they didn’t implant.  Sad.  (for those of you scratching your head right now thinking, what on earth is MAPping? It mainly means when the audiologist adjust the CI’s so you can hear better…but here’s a link to nice explanation with more detail, if you are interested.  It is in easy to understand terms to don’t worry. Mapping a Cochlear Implant).

The audiologist then told Stuart that they made an exception in 2 cases, if it was a hardship for someone to go back to the place they had their CI surgery done, or if they couldn’t travel that far because of a physical problem.  She said, in my case it is both.  Because of the Meniere’s it is a hardship because I can’t drive and I have to depend on getting someone else to drive me.  I am also physically unable to ride that far because of the herniated disc, and because of the vertigo.  So, they are going to see me at this office!

I really wish they had told me this before.  I do understand they they don’t want everyone to know there are exceptions because then people would be trying to bend the rules.  However, if they had just told me they didn’t get paid, I would have understood.  That would have made me very understanding.  I feel horrible that they don’t get paid.  I do not feel right taking advantage of them.  If I only have to see them once a year or so, we will just pay them for the visit.  If I have to go numerous times, I will try to go back to Duke.  Right now, I really need to have this done, and I can’t afford to pay for the visit.  I am so very thankful that they are willing to help me.

My suggestion to them in the future…explain to the patient that they don’t get paid.  I sure wouldn’t have thought they had awful business practices if they had told me that.

On a not so good note.  Well, first a good thing…I woke up on Halloween…No vertigo.  Yay!   By late that night I had a little.  It decided to come back faster than before.  I fell like its toying with me.  Oh my goodness it has not been fun, if I move my head I get sick to my stomach.  I have a headache all the time because I have to concentrate so hard to focus.  Then night before last….major attack!  Dang!  I didn’t handle this well.  Mindfulness…yeah I’m not doing well.  My brain is not staying in this moment.  I keep thinking, what if it doesn’t stop.  After all this slow stuff has been going on for a while now.  I can’t stop my brain from saying building up these stories.  It’s harsh.  And it is making it worse.  Last night I had a little bit more than a mini attack but not a major attack.  I handled it better, and got it to slow down.  I’m just so sad about it.

I’m working on a lot of self care.  Eating well, pampering myself a bit, reading things that make me happy, watching good things on TV, reaching out to people I know give me good advice or just make me feel good, getting good sleep, and enough rest.  Making sure I take my medication on schedule.  Keeping a routine as much as possible.  This is very important.  If I don’t do these things I know I could slip into a deep depression.  I know this because I’m biploar.  But this is important for anyone.  Especially those of us with chronic illnesses.  We can get sick easily when we are under stress, we have to take care of ourselves, and when life hands us some extra challenges we have to be diligent about taking care of ourselves.

I also have to rest more…that may mean taking a nap, or just resting more.  I need to meditate more….now during these times I won’t be able to quiet my mind.  I know that.  and that is ok.  I will just sit quietly, and breathe.  As a thought comes up I will acknowledge it and tell it to move along…I will probably be doing that the whole time…and that is ok.  It will still do me some good, and I’m sure I will feel better.  I need to not give in to my impulse to eat more, especially junk.  Yes, when I get upset, I want junk.  I can’t do that to myself.  Just as I can’t drink or do drugs.  I have to stay as healthy as I can to keep my depression at bay.

So I’m off to do some reading that makes me laugh.

Just wanted to share this great news!

Hubby decided we needed to celebrate.    Dinner tonight…Steak with roasted green beans and new potatoes.  And for desert….a parfait made with bananas, berries, Greek yogurt, walnuts and a touch of maple syrup.  Double yum!   (Ok, so I have that desert often.  It’s really good and good for me!  I feel good knowing I’m taking care of me.)

You can’t help me hear better why??

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease35 Comments
wendy charcoal CI
Me. Image by Me.

I broke down and sobbed at the ear doctor’s office yesterday.  I actually left there sobbing…in the elevator, out the door, in the parking lot…had to stop in the parking lot and catch my breath because of the sobs…then into the car…….

I could not believe what I had just heard!

Not from the doctor, that hurt but I wasn’t surprised.  He mainly said, I had to live with it.  I didn’t realize I was hoping for more until he said it.  but I was crushed.  I was about to cry then.  But I held it together, I knew I would cry later, but just a little…a little mourning once again.  Knowing that I may live with this constant vertigo forever.  The fact that my worst feat was coming true….well just a little.  It isn’t fast vertigo, that is my worst fear.  I will not build up that fear.  After all I may not live with this forever.  I do not know the future!   but the wound was open, and it was raw….I was acknowledging these feelings…it hurt.

Then we went to set up an appointment with the Cochlear Implant audiologist.  Thank goodness, I really need my CI’s adjusted.  When ever I have a Meniere’s attack my hearing goes wonky.  They refused to see me!!!!!  What The *%&^??

First the doctor had said that they didn’t see people who went from Charlotte to Duke to have their Cochlear Implant surgery because they do the surgery there.  OK? well that makes sense I guess….still that is not right.  So you choose to have your surgery somewhere else, then we will not help you after your surgery.  They want to people to have their surgery there that badly?

But he said, since I lived there and moved here, maybe it would be OK.  So they went to set it up….NOPE.

Then they came back saying it is their policy not to take transfers from anywhere in NC.  What?  Charlotte is on the far side of NC.  NC is a VERY long state.  If someone moved here from the far side of NC they couldn’t get their CI’s adjusted here?  That is like 10 hours away.  What?  That is just messed up.  What if my surgery had been done poorly and I needed help?  Oh I’m sure they would help me then, that would be surgery.  This is just seeing the cochlear implant audiologist. I still don’t understand.  They get paid for this.  It’s not like it is free.  The appointment last for 1 1/2 to 2 hours.  It’s expensive.  Frankly it feels like discrimination.   You are one of those people from Duke, we don’t like your kind here.  I am just floored.

So, they say I will have to ride 3 hours to Duke to get my CI’s adjusted.  Yes, that is just torture for someone with vertigo!!  Then to have the CI adjustment is very hard on me.  It always makes me sick and I get a migraine.  Then I will have to endure the ride home…another 3 hours.  (of course if I have vertigo really bad it will take us much longer, we may even have to stay the night somewhere.)  Ugh!

I am at a loss.

There is no other CI clinic in this city.

Right now we are making an appointment at Duke.  I can’t see me actually going to this place after this anyway.  How could I trust my care to them?

I’m complaining to the manufacturer who makes my CI’s because I was told by them I could get my adjustments done there.  I’m sure they have no idea that this place is refusing patients who have Advanced Bionics Cochlear Implants.  (or any other implant from another clinic)

I am really beside myself and this is starting me to spiral out of control.
I am going down…down…down…

I am working hard not to let it.

I am tired of feeling that everything is out of my control.
I can’t even make calls about this.

I want to call that audiology department and find out why this is a policy and see if they understand my situation.  I feel this is malpractice, but according to the Audiology society where I could file a complaint it isn’t.  It is their business practice rules and that isn’t considered something I can lodge a complaint against.  It is discrimination!  I am being discriminated against because of where I had my surgery.

I just can’t believe this.
Normally I would never think of going there after this.

I would want to make them pay, but I wouldn’t let them touch me.

but I don’t want to go so far away every time I need to be seen.

*sigh*

I don’t have a choice.
I can’t do anything, and let’s face it, Stuart is not good at these things….and this stupid office had no way for a deaf person to get in touch with them!!!!

I can’t email them!

I’m not good on a computerized caption phone.  There is always such a delay, and there is always words that are translated so wrong.  I gave up.

I want to scream. guess I could since our neighbor moved this past weekend.  LOL

OK….

I’ve vented enough.

That’s my predicament
on which I will lament.

Wanting to take care of me
but have to depend on he.

How do I reconcile myself to this half-life?
or do I continue to wrestle with this internal strife?

Many of life’s offerings I willingly accept,
but loss of all control, I’m not so adept.

This is today, I can’t predict tomorrow.
let me, wipe away these tears, let go of the sorrow.

I need to admit it, I’m having a hard time.

On By WendyIn Chronic Illness12 Comments

Ahhhh!!!  I wrote more on this post, I revised it, I saved it, I really did.  I wrote more on it last night, and saved it.  I opened it this morning and wrote more, I revised….I just tried to put in a photo and finish it up….error.   Really?  So I thought, I’ll save it and then try again.  It asked, “are you sure you want to do this?”  I knew it was too late then….all my work today was gone.   Oh but wait, a lot I added last night was gone too!  All my revisions.  What the???

I can’t do it again.   So all the revisions, all the changes, you aren’t going to get.  Because now I have a migraine.  I really want to post this today.   The parts that say today in here, are really yesterday….that was fixed in the revision, but Oh well!  This is what you get today.  I was feeling better today after voicing a lot of this, so today it was changed to be a bit more positive….you wont’ see that.   WordPress is not being kind, and I’m going to live in this moment and not deal with it. haha

So….here you go….the post that is kind of what I wanted to write.

Wendy charcoal

I haven’t written much about how I’m really doing.  About how some things have been getting to me a bit.  I’m trying hard to keep mindful and stay diligent with my mindfulness practice, but I have to admit, I’m not far enough along in my mindfulness studies and practices to counteract my feelings right now.

When we first moved to Charlotte, I was feeling so much better!  I was able to do things around the house, to take walks, to well….do things!   I could hear.  I was thrilled the last time I went to Durham I had a long conversation with my old neighbor and not once did I have to ask her to repeat herself.  Not once!  That was amazing!!  That has drastically changed.

Right now I can’t walk very far at all.  I can’t walk at all without pain.

I still haven’t been able to start physical therapy.  It’s mostly my fault…bad decision in the beginning, I thought I should wait until I saw the hip doctor to make sure he didn’t want to add things to the PT orders, or something, heck I don’t know, it seemed like a smart thing at the time.  That delayed things almost a week, then we called to set up an appointment, it was a week out!  So that is 2 weeks I wasted.  So my first appointment was supposed to be today.  I had a cluster headache last night, when I woke up this morning I had no balance and felt like I had a hangover.  There was no way I could go to physical therapy.  I could barely stand up.  So again a delay….until Friday.  *sigh*

My back actually feels better, I don’t have a lot of pain shooting down my leg any more.  My hip still hurts a lot.  But the hip doctor said nothing is wrong with my hip.  He was actually not someone I would want to see again.  He was the type of surgeon who looks at a scan and says, “Your CT scan is basically normal, there is nothing there I can fix.”  and then proceeded to tell me it was therefore all coming from my back and good bye.  Even though I didn’t hurt my back until after my hip pain started!  The back doctor said, yes I have a herniated disc, but I also have hip problems too.  The back specialist was wonderful!  He believes in conservative treatment first, and explained things well, was very knowledgeable.  I would recommend him to anyone!  This hip doctor, was knife happy.  If he didn’t see something he could immediately cut on me to fix, it wasn’t his problem.  No matter how many questions I had.  I told him that I could have gotten that information on the phone, and I was sure that was the quickest visit he had that day.  He said, he loved giving good news.   Ugh!!!

I’m trying hard not spin “what if” stories about the future with the hip/back thing.  I will live in each day.  I WILL!  I will work hard at my physical therapy and get my muscles back in shape, and deal with how it turns out when it happens.   This I will do.  It is just really hard.

Since the Fall weather has begun my ears have started to tell me they are in charge of my life again.  I was having multiple vertigo attacks a day.  Just little ones, I handled them pretty good.  It was exhausting.  It was driving me crazy.  I was trying so hard.   Every afternoon around 4 or 5pm I start having tinnitus that is pretty relentless.  It is hard to deal with.  It can drive you insane to hear this very loud noise every evening for hours.  My hearing sounds like I’m listening through a deep barrel.  This reverberating noise.  It has gotten much worse since I had the very bad Meniere’s attack about 3 weeks ago.  My balance has gotten much worse too.   These things have been exceptionally hard to deal with.  I can’t stand to be in a crowd, heck I can barely stand for Stuart to talk to me in the evenings.   I have been having slow vertigo almost constantly.  If I focus on one thing it moves.  Nothing is ever still.  I always feel like I am slightly moving.  This scares the mess out of me.

So where am I now?

I’m scared.  I’m lonely.   I’m sad.  I’m mad.    And I’m determined to NOT feel like this for long!!!!

This is a time when I have to be careful not to dip into depression.  I have to pay close attention to my bipolar signals.  I have to up my coping mechanisms.  Be sure to get plenty of rest, keep up with my stress, take my meds on time……pay attention to me.  Bipolar can sneak up on you at times like this, even when you’ve been stable for a long time.

Before I was when I was really sick and I was alone because I felt so ill.  Being alone was felt better for me.  I was almost afraid to be around other people.  Now, I don’t feel that bad…I’m not in horrific pain, I’m not throwing up all the time.  I just can’t stand to be around people because I can’t hear them.  I get confused.  Noise drives me crazy.  I can’t go for walks.  I can’t get out in the neighborhood and meet people.  I’m very disappointed right now.

I wanted to do things here.  I wanted to get out and really have a life.

I’ve been stuck on this couch for so long.

am I giving up?

What do you think???

I have an appointment with a new otolaryngologist here coming up soon.  Will he be able to do anything?  Maybe not.  But he will be able to give a new perspective on things.  This is a big clinic here and they are doing some studies on Meniere’s.  I probably won’t qualify for any because I am so advanced, but since they are so interested in the disease means they have some people there that are open to different things.  So who knows?   I will also be getting my Cochlear Implants adjusted.  After I have a major attack I always have to have them adjusted.  They think it’s because when someone with Meniere’s has an attack the area in the cochlea swells, well that is where all the wires are for the cochlear implant, that is how I hear.  They get pressed on and it changes things.  So things have to be adjusted.  This doesn’t happen a lot with people who have Meniere’s who get CI’s because usually when they get to that stage they have stopped having vertigo attacks, or they don’t have them very often.  This has become a pretty routine thing  with me.  So I had to find a CI audiologist close to home.

Even if the new doctor doesn’t help….I will deal with things.  I’m sure we can get my hearing better.  If not, I will deal with it.

That’s what I do.  I accept things, and move on.  That’s life.  and as much as the road as been a bit rocky lately and I have had a hard time dealing with things, I still love my life.  really I do!  I have a lot to be grateful for…I’m just a little overwhelmed at the moment.   Having a little bit of difficulty with “not wanting things to be different”.   I want things to be different.  Right now I want that very much.  If it doesn’t change?   I will adapt.  I will change my expectations.  I will accept.  It will just take me a little bit.

Sick and Confuddled

On By WendyIn Chronic Illness16 Comments
mushroom with quote
photo by S. Holcombe.

I recently wrote a post that could easily have taken up 3 posts worth of writing.  You know if I wrote that much in one sitting I have a lot on my mind.  You also know if I’m making up words to say how I feel, I’m in a one heck of a state!

Some of the things I have written you will still see, I’m breaking it up into a couple of post, some of it you won’t….I have decided I just can’t talk about it here.  Maybe some day, but not now.  I want to, I think it will help some people, but it’s just something that I can’t talk about yet, at least not here.  And that’s hard on me, for a number of reasons.

So…on to what I will talk about…   (and it turns out this post is MUCH longer than anticipated….yep it’s one of those days.  as you get to the end you will understand, but forgive any errors please, I couldn’t go through and edit this, I am in too much pain.  But I wanted to get it posted.  at least part of it needs a voice…..)

Saturday my father and sister came for a little visit.  It was nice.  Even though we only live one state away we don’t get to see each other much.  They don’t get to come often, and I can’t travel very often.  Unfortunately, since our trip to Tucson, 2 years ago, I haven’t been able to travel at all.  I thought it was going to be better the last few months, but then I hurt my hip.  Now I can’t ride in the car across town without being in severe pain.  So who knows when I can go to South Carolina.  Thankfully, my sister brought my dad to see me.  We had a nice lunch and visit, then they were on their way.  Before they came I decided to get a shot of Toradol, an anti-inflamatory to help me not be in intense pain while they were here.  I wish I could have them more often, but you can’t take them on a regular basis.  I was very pleased that I could visit with them without worrying too much about the pain.  I was also happy I could hear them fairly well.  I couldn’t hear my father at first, but after a little while I realized if I sat closer to him I could hear him better.  What a relief.  I felt bad that I could understand everyone else, but was having such difficulty understanding him.  All in all, a good visit.

After they left I decided my hip was still feeling well enough we could go and meet the dear lady from the agency who had Kiki and make her adoption final.  So off the Pet Supermarket we went.  Luckily, they are very nice there and let me have a chair to sit in while we shopped a bit and adopted our newest family member.  Since the vet thinks Kiki is between 1 1/2 and 2 1/2 we decided that her adoption date is her 2nd birthday!  So September 27th is her birthday!  She was lavished with gifts.  She got a new sweater, because she has been cold on some of these early fall mornings when she goes out.  It is red, and looks quite fetching on her sleek black and white body.  She also got a new toy that she loves!  She has abandoned all of her other toys for this toy, it is so funny!  She also got a new tag, a little purple heart with her name and phone number on it….we need to get her microchip reprogrammed.  She is officially ours now!   I was so very happy when we were in the store and one of the people who work there told me that he had seen Kiki so often when she was there waiting to be adopted and she looks like a different dog.  She is so happy and well mannered.  He said it is amazing how much she has changed in just the short time we have had her.  That couldn’t have made me happier.  I knew then, that yes, Kiki really was meant to be our little girl.

Saturday night I was getting ready for bed.  I was sitting on the side of the bed taking my night meds and suddenly I felt the Meniere’s signals.  Okay, this has not been unusual lately.  I’ve been very acute for the past month or more.  Having mini attacks many times a day, so I wasn’t worried.  I took a deep breath and calmly tried to focus.  Then FLUSH..heat through my body.  Ugh. OK.  Calm. Focus.  You got this.  Whoosh.  better lie down.   Focus.  feel the hand on the table it is steady.  you are not moving.  HEAT.  HOT. I’M ON FIRE.  Stuart walks in.  “Attack?”  “yep. ice.”  Focus.  breathe deep. calm. calm.  Spinning faster.  wow.  deep breath. focus calm. you got this. it’s ok.  spin. stop. spin. stop.  breath…..Ice..Good!  Still hot.  chest hurts.  can’t breath deep.  calm. spinning fast still.  calm. calm.   it’s ok.  it’s part of you.  you can do it.   “Stuart…shot please”   focus calm.  calm. so tired.  (took meds earlier.  Stuart got shot ready,(I’m lucky I have Phenergan shots available to me, it is an anti-nausea/vomiting drug) he was about to give it to me and dropped it. Couldn’t find it.  suddenly spinning stopped.  yes.  OK. rest.

BAM. started going the other way!  What the?   OK…calm down. but this is weird.  you can do it.  focus. feel your hand. –  what the heck is happening? this is not right. –  it’s  all OK.  focus. calm calm.  focus.  it’s just different. – no, this is very different.  now it’s jumping all around.  what is going on? –  calm down. calm down.  calm calm.  focus. it’s kind of freaking me out he can’t find that shot – focus on your focal point.  it will be alright.  – I need the damn shot!  I’m getting scared. –  shhhh. calm down. focus. focus.  breathe.  calm..calm.  this is not real.  the room is not moving.  You are not moving.  calm breathe.  – Ah…shot.  It will be better soon. –  Calm…calm…shhh.  AH! oh my gosh….”Stuart”.  “I’m right here babe. I’m not leaving you.”  “I can’t stay awake.  I’m all dopey.  If I fall asleep it gets worse!  I’m so sick.  I’m scared.  It hurts.  My stomach hurts.”  “I’m right here, you are safe.  I’ll try and keep you awake if you want”

This went on for a long while.  I kept dozing off no matter what.  It was horrible.  I would wake up spinning even more!  Then I got VERY sick.  I was going to throw up.  But nothing came up.  I just gagged, and coughed, and mucus from my lungs came up.  I couldn’t take a breath in!  I had this huge gag that felt like vomit was coming up but it was like a HUGE burp came up then I couldn’t breathe.  My lungs hurt. I was having an asthma attack and trying to throw up at the same time! I was so afraid I was going to have to go to the ER because I could not breathe.  Stuart was holding me putting my inhaler in my mouth for me.  I got enough in to breathe again.  (afterward he told he kept watching to make sure I was getting in some air and not having any signs of needing oxygen….but he is also thinking we may need to see about getting oxygen for me at home.)

Finally, it calmed down enough that when I dozed I stayed asleep.  And I slept!   The pain from my hip did not wake me up at all that night.  I was so exhausted.

The next day, was hangover hell.

I felt so bad.  I was trying so hard not to feel like I handled thing badly.  I really freaked out.  I panicked bad.  I couldn’t stay mindful.  I couldn’t accept what was happening to me.  I hated my body, I hated my life, I was afraid I was dying and hoping I’d just hurry up and die at the same time.

This is not what I have been working so hard on.  This is not mindfulness.  But it is.  Mindfulness is a practice.  You can’t beat yourself up if you don’t live up to your expectations all the time.

Mindfulness is not just about making it better. It is about feeling how you are, how things are now, and not being judgmental about it.  It is about being gentle with yourself.  On Saturday night, I could not accept my condition.  I could not handle my situation without panicking.   That was the way it was.  I could feel every nerve in my body screaming that it wanted this to end.  I couldn’t accept that this was just the was it was…I fought it.   But I was there with it.   I had a hard time looking back at it non-judgmentally.   But now I can.  I can look back and say, I had a damn hard night.  I handled it the best I could.  Things happened that have never happened before, and it really scared me.  Who knows, I may have handled it better than I would have in the past, because of my mindfulness practice?  I’m okay with how I handled it.  At first I was sad about it.  I felt like I failed myself.  I didn’t.   Mindfulness is hard.   Living mindfully is not easy.  But it does making living your life easier.  Or at least it has mine.

So I’m off to being more accepting of how my life is, even when it’s that bad.  It’s my life.  It’s much easier on me when I accept that.  If I try to fight it, it makes it worse.  It really is better when I accept that I have my illnesses, and I have the symptoms, and all the things that they cause.   I have found that I can deal with those symptoms better when I stop fighting them so hard.  I feel better.  I cope better.  Heck, the symptoms have been easier.

I’m just saying how I feel about all of this, I’m feel I’m just testifying..haha.  I’ll write a more coherent post about this sometime.  With references.  Or maybe I’ll find a guest writer.  Who knows.  For now, we’ll just see how it goes with me….hope that’s alright with all of you.

On Sunday, I decided I couldn’t stand the pain and the constant Meniere’s attacks any longer.  They use steroids to break both cycles.  However, too high of a dose of steroids can really mess you up with Meniere’s and make you have worse attacks.  So I started on the dose that the urgent care doctor gave me and put a call in to my otologist at Duke on Monday.  Unfortunately, it was phone tag for a few days, and then he wasn’t comfortable messing with this prescription.  I do not think he understood the situation!!  I am so beside myself right now!  I mean right now, I just found out about this.  I am looking at these pills trying my best to figure out the best way to ramp down off of them without it being too drastic.  Going from 4 on one day to 2 on the next is not a good idea.  So I take out the prescription bottle and count how many I have left.  10.  Wait, I should have more than that to meet the original prescription.  I count again.  10.  STRESS!  I filled this prescription weeks ago.  Will the pharmacy really believe they shorted me?

Thankfully, yes they did.  I got 6 more pills.  I can do this.  Breathe.  Take the day as it comes, and accept it.  That’s all I can do.  So….I sit down and think.  I will figure out how to ramp down the steroids that is between the prescription the urgent care doctor gave me and the prescription my ear doctor gave me before.  I’m sure I’ll be fine.  It’s not quite such a severe drop between going down.  Should I be messing with my prescription?  Heck I don’t know!  But I feel better, with this regimen.  I’m too afraid to ramp down so fast.

For those of you who have been reading for a while….remember the Walmart incident?  That happened because a doctor put me on a high dose of steroids that ramped down too fast.
Now you once again have a VERY LONG POST.

and I’m too tired to read over it to fix any errors.   I’m being a very bad blogger.  I hope you will forgive me.   I just fell again today….I’m not going to write about that now!  I’ll tell all about my back/hip/leg pain after my doctor’s visit on the 6th!  I’m sorry, but I’m not up to being an editor today.  🙂   My back/hip/leg thing…just isn’t going to get better if I keep falling is it?  Of course, that’s why I’m falling!!   I can handle it…..one moment at a time.  I can handle anything for a moment, after all, isn’t that really all we know we have, this moment?

***rest in peace to my cousin Curtis Winslow.  My childhood memories are full of you.  1958 – October 1, 2014

things change….

On By WendyIn Chronic Illness, Mindfulness13 Comments
Everything Changes - photography by w. holcombe
Everything Changes –
photography by w. holcombe

Trying to hold on to the good days, thinking life will stay that way forever is fruitless.  It will change.  And it has.

My hip flare up, that was just this little thing, that was supposed to calm down after the cortisone injection….has become a complicated mess.

I had my hip injection on September 11th.  We got Kiki that evening.  It was an exciting day.  I expected to be sore that night.  I expected to possibly be sore the next day, but would probably feel better….and continue to get better.  That didn’t happen.

I’m not sure if the shot did anything.  I don’t think so.  However. on the night of September the 12th, I got up and went to the bathroom.  I started to sit on the toilet and lost my footing and fell, hard, onto the seat.  My elbow hit the back of the toilet where I keep a box with things in it and I got a nice little scrape on it.  The big hurt was my hip.  OW!  The pain shot through me, from the top of my buttock, along my side down through my knee….I was in PAIN!   I have been in constant pain in this areas since that night.  The pain ebbs and flows, but never gets better than a 6, and if often hovering around an 8.   I had Stuart give me a  Toradol injection.  This really helped.  Toradol is a nonsteroidal anti-inflammatory drug.  (I can’t take NSAIDs by mouth because they tear up my stomach, but I can have these injections occasionally.)  Since this worked to take most of the pain away I was sure I hadn’t broken anything.  I was also hoping the cortisone shot would kick in and help.  So I waited….

The cortisone didn’t help.  I went back to the doctor on the 18th.  She was disheartened.  She suspects that my pain may be coming from my spine, and maybe also from my hip.  She set up a CT scan with contrast dye, and she wants me to see a spine specialist, and a more specialized hip doctor.  (she is actually a PA in the office, she wants me to see a specific doctor in the practice).  I will have the CT scan on Friday.  (I was originally supposed to have the CT scan today, but I didn’t sleep at all last night and I can’t control the Meniere’s vertigo today, and since I could get in closer to my doctor’s appointment I decided to change the appointment.)  I see the hip specialist on October 1st, and I’m not sure when I see the spine doctor yet, I haven’t heard from their office yet.

How am I handling all of this?  Some days very well.  Some days not well at all.

I have had a hard time not getting really stressed out about this.  I’ve been creating “what if” stories in my head.  My mother started having back problems in her 50’s and it really changed her life.  She died of lung cancer when she was 64, but I’ve never been convinced it really didn’t start in her back.  There are many reasons I believe this, I won’t get into them here.   What if I have to live with this pain forever?…….See the stories I have been spinning in my mind….this is not a good thing.  This is not a mindful thing to do.  It does NOT make things better.  It makes it worse.  The stress builds, and everything spirals out of control.   When I think like this I can feel the depression creeping up over me.  It is oppressive.

Then I try to be more mindful.  Being mindful is hard.  It isn’t something you can just click on with a switch and suddenly you think mindfully all the time…I wish I could, I think I would handle things better.  I’m trying.  First, I am trying hard to stay present.  I cannot change what we are going to find out, but I sure don’t have to make up all these horrible scenarios.  I could have something easily fixable.  If I have something that is more difficult to deal with, I’ll deal with it.  Either way, I don’t have any idea, so stop speculating.  Keep my mind in the present, right here, right now.  That is the least stressful thing I can do.

I also got so stressed because we got this precious little dog, Kiki, to take care of and suddenly I can’t take care of her.  I can’t even feed her.  I can’t take her out.  I can’t care for her at all.  Stuart would not have signed up for this had he known he would have been the sole caregiver for me, Max, and now Kiki.  We would not have adopted Kiki at this time.  Does he regret it?  No.  But would he have done it?  No.   So I have been having that emotion that simply doesn’t help…..guilt.  I have put more work on him, and I feel guilty because I can’t take Kiki on long walks and to the dog park and do things I feel she needs.  I can’t focus time on training her.  I feel guilt.  Ugh!  useless!

Not sure how that is handled in mindfulness, but I know for me, I need to channel that into something constructive I can do.  Haven’t figured all of that out exactly, but I will.  Yes, this is not how I planned for things to go, so I need to change my plans.   I have been playing with Kiki more indoors as much as possible.  She will bring me a toy and I will throw it.  She brings it back and drops it in my hand. (how cute it that?)  I have taught her to sit before I’ll throw it again.  (really, she was already doing that most of the time.)  I will hide it and have her find it. (I think this is a newer thing for her!)  So we are working on some training.  It’s just different from I planned.

Then I go back again to how I feel about my body, and what is happening.  My Meniere’s is acting up big time!  I always tell myself to stop trying to figure out why, it used to drive me crazy, and I would end up blaming myself for my attacks, but this is pretty obvious.  The pain will not allow me to sleep or rest enough.  I can’t relax.  Also, it is Rag Weed season.  I think I’m handling the rag weed pretty good, but I can’t keep up with the exhaustion.  My hearing is going up and down; yesterday if I was blind folded I would have sworn a jet engine was in my living room.  When the noise started I kept asking Stuart, “what is that noise?”  He looked at me funny.  I said, “You don’t hear it do you?”  I realized it was just me…dang.  Then it got louder and louder and louder….and it lasted for over 2 hours at the loudest point.  I’ve never had that happen before.  I’ve had very loud tinnitus, but I’ve never had that it that loud for that long.  It continued to be loud for the whole night but it did dial down a bit.

I hate to say it but, I’m just one big vertigo attack.  I try to control them but that is exhausting too.  Most of the time I’m spinning at least a little bit.  I have been able to control it enough that I haven’t had full-blown… spinning so out of control that I can’t see what is in front of me… vertigo, but this constant boat feeling and everything waving is driving me crazy!   I keep focusing on my breath…grateful I am still breathing.  Then I laugh…they say breathe, take a deep breath..ect.  It’s not like we are going to stop breathing.  It is something we do.  Do you ever really focus on your breath?  Really think about it?  If you have ever gotten choked and couldn’t breathe I’m sure you did then, but normally we just take it for granted, like we do our heartbeat, and how our brain works, or the fact that we blink…ect.   So,right now suddenly I’m thinking about my breath, not just the in and out, but the actual breath.  How it works.  I have pulmonary problems so I don’t take my breathing for granted all the time, and I know a lot about how my lungs work….so I think about it, and really I’m thinking about how the oxygen goes through my body, how it nourishes my whole body, how my breath goes through all of me, down through my toes even.  and suddenly I just realized….just now as I am writing this that I have calmed down and feel more in tuned to this body and it is just fine.  It is working pretty darn good.  It’s my body.  I like it.  I love me.  I’m at peace with it.  I accept it the way it is.

Now that is mindfulness.  That is what paying attention to your breath is supposed to be…..wow.  I feel better, right now.   I know this isn’t easy.  I’ll be working on being mindful forever.

 

 

 

 

 

I’m a Spinning Hipster

On By WendyIn Chronic Illness, Hip pain, Meniere's Disease6 Comments

It is a challenge to always be aware of what is happening right now, without wishing it were different.  However, that is the basis of mindfulness, and it does help when you live a life full of chronic illness and pain.  Sometimes I just can’t do it, sometimes I wish things were different.  It’s not that bad right now.  Yes, I’ve wished it were different at times, but I haven’t been too worried about it.  I know things will change, and I one very big thing I have learned, even when I can’t be mindful enough to be aware of what is happening in my life right now, without wishing it were different, I can be non-judgmental of myself.  That’s a big thing for me.

Traveling back and forth between Charlotte and Durham over and over again during this move has worn my body a little bit.  My hip left started to protest a little over a month ago.  We came back from Durham and I wasn’t walking very well.  I rested it and after about a week and a half I it was acting more normal.  Then we went back to Durham.  When we got back, I was much worse.  This time it didn’t settle down.

hip x-ray courtesy of http://www.orthop.washington.edu
hip x-ray
courtesy of http://www.orthop.washington.edu

I ended up going to the orthopedic urgent care on the evening of August 29th, yes they have a special urgent care here just for hip and knee orthopedic, isn’t that amazing?  I was shocked at how wonderful this place was.  I didn’t have to wait long.  They didn’t rush me in and out, the doctor took his time with me, they all worked hard to make sure I understood what was being said after they learned I was hearing challenged.  (nice way of saying, one of my Cochlear Implants was broken so I was really not hearing much of anything!)   The x-rays showed that everything looks good.  He thinks the labrum is catching, but really we aren’t exactly sure.  I’ve had trouble with the other hip too.  Could just be in my genes.  My father has trouble with his hips (well he had trouble, now he has new hips) and my aunt has trouble with her hips.  It could be arthritis starting, just not to the point of showing up on an x-ray yet, or I’m just wearing out.   The doctor wanted to give me steroids to get the inflammation to go down.  He said when inflammation starts it is very hard to get it to stop, it just kind of get out of control.  I explained to him that I am very afraid to take steroids because they often cause me to have severe vertigo attacks.  He respected that and said he didn’t blame me.  He suggested getting a shot in the joint.  I agreed.  Then we realized the holiday was coming up.  I was in a lot of pain and told him to write the prescription for a very low dose of steroids and I would take them.  We filled them on the way home and then I chickened out.  I couldn’t do it.  I’d rather hurt, a lot.

I had a follow-up appointment scheduled for Tuesday afternoon.  I was awakened on Tuesday morning by a Meniere’s attack.  Full blown vertigo!  There is no way for me to prepare for that, couldn’t center myself and get calm, all I could do was grab the trash can!  I was totally unprepared!  Stuart had just left for work.  My phone was across the room being charged, this is strange, I normally charge it on my night stand, for some reason I plugged up across the room.  My emergency kit was in the living room.  I was really unprepared.  I started to panic.  Then I stopped.  I took a deep breath and said, “NO”. “Calm Down”  “Feel the Night Stand under my hand, it is not moving.  I’m not moving.  Look at the bottle on the night stand.  It is not moving.  Focus.  Calm Down. You are safe.”  It was very hard because I was SO HOT!  I had no way to cool down.  That was making me very sick.  I did get in a Valium and Phenergan. I was calming down but the heat was still making me sick.  I started to control the spinning but was still throwing up because of the heat.  I was able to lunge for the phone and text Stuart…”vertigo help”  all of this had happened so fast.  He had just parked at work and gotten out of the car, he turned around and got back in the car and came home.  (I found out it did take him longer to get to work that day because he stopped to get gas, so it didn’t happen as fast as I thought.)  He came home and got me an ice pack and cooled me down.  Then I could really make peace with everything.   I did a good job handling things.   I will say, I did want things to be different.  I’m not that great at that part of mindfulness all the time yet.  In that instance, if nothing else, I wanted me to be more prepared.  I haven’t had anything like that happen in so long, I got lazy.   I can accept the fact it happened.  It is the nature of the beast.  It happens.  I was very upset that I was not prepared.

stop worrying
image at http://sharifahnorhamidah.blogspot.com

Then I started to worry.  What if I am on my way to feeling bad again.  I had a reprieve of a little over 4 months before, and it all feel apart.  What if…..   What if….   My mind grabbed a hold of that and it kept going back to it.  I would think I needed to stop thinking about the future I can’t control it, but I wasn’t really able to stop my mind from going there.  Finally I was able to let it go.  No I don’t want to end up getting that sick again, but if I do, it’s not the end of the world.  I will make the most of it.  I learned a lot, heck, if it happens again, I think I could handle it a lot better this time.  I can’t control what happens.  I’m not going to worry about it.  I’m not going to think about it.  I’m staying right here in the now.  I’m living in this day, and I like it.

My appointment with the hip orthopedist was rescheduled for September 4th.  I still felt a bit hung over from my attack on Tuesday and my hearing sounded a bit off, but I was able to make the appointment, no problem.  I saw a different doctor.  She was also very nice.  The entire office is very understanding about my hearing, and try very hard to remember to look at me when they speak.  (I did have both my Cochlear Implants in working order at this time, but it is still always a challenge.)  My doctor forgot a couple of times and I gently reminded her that I need for her to look at me, she was so apologetic, you could tell she was trying so very hard.  She is just so used to speaking to both people in the room, and also speaking when she takes notes.  She was a lovely woman who explained things very well, and gave a thorough exam, that HURT! haha  She agreed with everything the doctor said in Urgent Care.  I will be getting a shot on the 11th. I will go back to see her about 4 weeks after that.  She told me to take notice how I felt when I got the shot, if I felt better immediately, when it started to hurt again, if I felt better later….ect..  This is a good diagnostic tool telling them more about what might be wrong, and we will discuss it more when I see her again.

Right now, my hip hurts, but I’ll be getting a shot soon.  I’m feeling happy I’m alive to feel it all, and just be.  I’m grateful I handled the attack as well as I did even though I wasn’t prepared.  I’m grateful my hubby has a flexible job and was able to come home and work from home that day and watch over me….and take the time needed to take me to the doctor.  I’m grateful there is a special urgent care for hip and knee orthopedic needs.   I’m grateful I had such great doctors at both of my visits, the urgent care doctor and the doctor at my follow-up visit.

I have much to be grateful for during all of this.  I will admit there are a lot of challenges.  I am not able to do much without pain, so I can’t do things around the house.  Stuart is once again having to do most everything.  This is taking its toll on my poor husband.  I can see it wearing on him.  There is still so much to take care of with the house in Durham.  So many things to just do.  It doesn’t help to worry about it.  We can’t change things by worrying.  What has happened, happened.  We can make plans for the future, but we can’t get too wrapped up in them.

Something we’ve had to learn because of my illness, don’t fret if something happens to mess your plans all up.  Change your plans as the day changes.  Go with the flow, it’s much easier to float with the current than to fight up-stream.  So when things happen to completely go against your plans, change your plans.  I sound like a broken record, but this is one of the hardest things for people to understand.  Not just chronically ill people, everyone can learn from this.  People get really stressed out when things don’t go as planned.  This goes for what we expect of others too.  Perhaps we should talk more about this at another time….this post is getting a bit long.

Life is a series of natural and spontaneous changes. Don’t resist them – that only creates sorrow.

Let reality be reality. Let things flow naturally forward in whatever way they like.    ~Lao-Tzu

An Expedition – Part 2 “A Look Inside. What did I learn?”

On By WendyIn Chronic Illness, Meniere's Disease8 Comments

 

Courage1
by W. Holcombe

 

After listening to myself, I decided I should stop trying to figure things out when a vertigo attack starts.  It doesn’t help.

 

I can’t stop a vertigo attack.

If I try to figure things out during an attack I’m creating more angst for myself.  This is already an extremely stressful situation, adding to it does not help.  The best thing I can do for me during an attack is to try to stay as calm as possible, and ride it out.   Stay safe and take care of me.

It is now a week later, I’ve had time to look back, and think about things:

  • I noticed I was feeling antsy, anxious, even a bit manic.
  • I literally had the feeling of shaking inside. A physical reaction.
  • When I started out to get in the car I lost my footing and felt unsteady.
  • At the store I noticed the noise was too loud.
  • We planned to go for a short trip, but once we got there I decided to stay longer.
  • I had to stop more than once because I needed to get focused.  (I needed to focus my eyes on something still.)
  • I was irritable.
  • People were annoying me.
  • When I couldn’t hear Stuart I got annoyed.
  • The irritability got worse as my focus got worse.
  • When we were in the can goods aisle I noticed that I felt things may be moving.   *** It wasn’t until this step that I really noticed that I was having to refocus on things and that I was feeling annoyed and irritated.  

That’s a lot of things I could have picked up on.  Or is it?

For the past, almost year now, I’ve had a very hard time leaving the house for anything other than doctor’s appointments.  Yes, I’m a bit agoraphobic.  I think it’s understandable.  There’s a real possibility that when I go out I will have a vertigo attack, an asthma attack, lose my balance and fall, ect….   I feel safe at home.   This doesn’t mean I don’t go out.  It means I’m afraid when I do.  Sometimes, the fear wins, and I stay home.   Yes, that’s alright with me.   I’m still able to do go out and do something enjoyable now and then.  I work on it, but I still don’t want to take a lot of unnecessary risks.

Because of this fear, this sometimes paralyzing fear, I did not sit back and really analyze the anxiety I was feeling before we left, or the anxiety I was feeling in the store.  I was proud of myself for going!  I was proud that I got out of the car and went in the store!  I was proud of myself for feeling like I didn’t have to run from the store screaming!   So, not picking up on the anxiety being anything more than “normal”….understandable.

So I ask again.  What did I learn?

First, I did learn I need to think before I leave.  Listen to my body!

Is this feeling because of my fear of leaving or something else?

This time, it was mostly due to the fact that I had been put on a course of steroids and I was having a reaction I had not had before.  Yep.  I’ve heard many people tell me you can have these symptoms while on steroids, I simply haven’t had them before.  However, I was on a short pack of high dose steroids to break a month-long migraine.  It worked on the migraine.  That’s also why I was feeling a bit “manic”, and physically jumpy inside.   The physical jumpy feeling should have been a big clue.

Second, I learned that I do not do Big Box stores well.

Even if I had not been taking steroids, I was not focusing well in the store.  The tall aisles, with the repeating merchandise…..over and over….  The way the noise travels in the store….all of this, simply, is not good for me.  I learned this is a trigger for me.

Would it have helped to understand this during the attack?  NO!

Will this knowledge prevent future attacks?  Maybe

A person who has Meniere’s Disease is at the mercy of a vertigo attack.  A vertigo attack cannot be predicted.  It simply can’t.   Sometimes we have little clues that it may be starting, sometimes we don’t, but never can we predict it.   Nor can we stop it.   It is not our fault if it happens.  No matter what we do.  We can avoid our triggers to try to decrease the attacks.  We can take care of ourselves to try to make it easier to handle.  But we must remember we cannot blame ourselves.

I can never be in control.

 

An Expedition – One Mile From Home

On By WendyIn Chronic Illness, Meniere's Disease8 Comments

I was feeling good on…oh what day is it now?   It was on Thursday…yes, that’s right.  We needed a couple of things from the store, and since I had been doing better, I decided to join Stuart on the expedition.

I was so proud of myself, I had been going downstairs pretty much every day, I had taken 3 baths! (for those who know, that’s a big deal for me, I’m terrified of having a vertigo attack in the bath)  I felt I had made strides.  I was feeling good about them.  Yet, I was feeling jumpy, a bit rough around the edges, but thought it was just nerves, and anxiety about doing more.   I even noticed that I was feeling a bit, shall I dare say, manic.  It wasn’t full-blown, I even told Stuart, if I didn’t feel ill I would be feeling really, really good!  It was odd.  A jittery sort of odd.  But I felt BETTER!  I even got up and put make-up on…and everything.  I realized I haven’t paid much attention to me in a long time.   I want that to change.  So….I did what I could to head out with my husband.

As we started to leave I got a little antsy and started not to go.  Just felt like my footing wasn’t right.  It took me a minute, a few deep breaths, but I was dong so well, we decided to just go pick up the 2 things at Walmart because it’s just ONE MILE from my house.  That way if I started feeling bad, we could get home quicker.  That was a good plan.  Just this little shopping center a mile from the house, I can do that!!

When we arrived I was doing well so we wandered a bit.  Then we went down a row of canned goods.  They all decided to just roll down the aisle a bit with me.  I stopped, focused down to the basket, concentrated, calmed myself and was steady again.   I told Stuart that I thought we needed to leave.  He, of course, was more than agreeable to get out of there, but we got to the line and the first few were FULL….I was feeling anxious, nervous, and a bit claustrophobic.  Suddenly, the bitch came out!

Stuart:  “It’s going to be a while.”  Me:  “NO, there’s a shorter line right down there!”  He goes toward it, I am looking at the next line, someone jumps in the line I’m looking in and he jumps out of his line.  I’m fussing, “What are you doing?”  He’s telling me he didn’t know what I wanted….ect.  I just needed OUT.  I was getting more and more anxious even though I wasn’t “feeling” worse.  I wanted things to not be as they were!!  (not a good thing, I should have just calmed down, taken stock of what was going on…probably unplugged my CI’s because the noise was getting to me, and taken some meds…..but instead, I reacted, poorly.  And now I’m wondering if I don’t always do that when this is happening?

Stop! Yeah…..you, Stop the story!  

What?   Who’s that?    Oh….it’s me talking to me….what have I done now?????

You are not telling it right.  Just tell it.  Don’t analyze.  You are telling part of the story you shouldn’t even know that yet.  You are already asking.  “What did I do?, Why did this happen?, What caused it? Why didn’t I notice the signs?”…. so   STOP.  Now….just tell the story, then after it’s over, maybe you can look back and see if there were things you missed, triggers that you didn’t notice, anything that might help, but now…..STOP, it’s self blame for something you have no control over!!!!

OK……I guess I should listen to me.   So….the rest of this story….have I completely screwed it up so far?  Should I start over?   eh….I’m way too gone to think of things again.  I’ll just tell what happened next….  So where was I????

We took our stuff to the car.  I wanted to go to another store that was in the same shopping center, so I mentioned that it would take just a minute to see if they had what I wanted.  Stuart kindly said, “or we could come back tomorrow….”   Bitch attack again!!   “Do you realize how much more that would take out of me?  It takes so much for me to come out and we are right here…..”  and I stop!  In mid-rant.  What the heck?   I was so sorry.  I was aggravated, but there was no reason for me to act like that.  I was so agitated!  Then I was so remorseful.   I couldn’t believe I just went off on him because he was trying to be thoughtful.   So, apologies flew from me, and we prepared to drive over to the other little store.   We backed out of the parking place….drove down the lane….and

walmart vertigo
photo manipulation by W. Holcombe

This Happened!

“Can you please pull the car over?”

Stuart – “What? Now?”

Me – “I need you to stop the car now please!  I need a shot!!!”   (let me explain about the shot.  Because I have migraines so bad I have a prescription for Phenergan shots.  This normally helps stop a vertigo attack faster than anything else, so I keep some with me at all times.)  I also took Valium at the time.

Yes, that’s when the attack started.  We were driving out of the parking lane, and got close to the end and WHOOSH, the world spun!   (the little snapshot above does not do the motion justice!)  I felt like my head was being thrown around in the car.   Stuart got the shot in me fast!  Suddenly things slowed, then they just went crazy again!  I was stuck huddled in the car for an hour, just trying so hard to hold it together.   Nothing was stopping this attack.   My darling husband spent all this time talking to me, trying to say anything to just keep my mind off of what was going on.  And trying to keep me as comfortable as possible.  I am grateful the vomiting didn’t start in the car, but I was so SICK!  Spinning…spinning….ohhhhhh.

Finally, I asked Stuart to try to move the car a little.  At first I couldn’t stand it, then I just knew I had to get home.  Things were bad and I had to feel safer.  As I mentioned, we live ONE MILE from this store.  He drove home, slowly.  He told me every little turn, every bump that was going to happen…everything.

We got home, he got me in the house.  I collapsed on the couch and started to vomit.   I had to go to the bathroom so bad, I also lost control of my bladder.  But I was safe.  And the attack got better.   The severe spinning subsided.  But I didn’t sleep, I was so jumpy!

After an attack it’s normal to simply pass out from exhaustion and sleep for a long time.  I was still so jumpy and antsy.  I was miserable.

I’ve had a long past few days.   I haven’t had one moment since this attack where I felt my head was steady.  Am I having full-blown vertigo all the time, no.  But, if I move my head….well, let’s just not move my head!   I can only sleep on one side, if I turn over I have vertigo.  I’m a mess.

So this is part 1 of this saga.

As my inner self decided to step in above, I think I’ll take a little time and reflect on this.  Think about what happened, and what I learned.

Next Post…… A Look Inside:  So what did I learn?

Hey Doc, You are Fired!!

On By WendyIn Chronic Illness, Mental Health11 Comments

you're Fired

Small note…I started this post on Friday, April 18th.  I updated it today.  It’s a bit long, sorry.  I apologize if it is a little bit jumbled, my head is in that frame of mind right now.  Trying to get everything in, and just now knowing where to stop.  As normal, there may be grammar, typo’s and all kinds of mistakes, if it’s too much, just let me know.  But you may get a long letter back.  : )

After much toil and trouble trying to get help from my psychiatrist, it’s time to give up and move on!

Hey Doc, You’re Fired!

I wonder if firing a doctor makes them understand much, after all, they still have a job, but they don’t have me as a patient any more. If she continues to treat patients the way she has treated me, I don’t see how her new practice is going to survive!  Also, where I’m concerned, she will be told why she no longer has me as a patient, maybe it will bring some understanding.  I’m sure part of this is my issue, but some professionalism must be maintained between a doctor and patient.

From my last post you may remember that I saw my psychiatrist on Wednesday, April 9th.  (This was after a month of trying to get my medication straight and get an appointment to see her.  All of that after having side-effects from a medication that I should never have been put on.  She did not look at the medications I had been prescribed by other doctors.  If this had happened, and we had discussed this, I would not have been prescribed a medication that interacted with my other medications.)   On the 9th, we discussed my medication, and I discussed the fact that I felt the need to start an emergency plan in case I was going to hurt myself because I was having many thoughts and desires of doing just that.  I really felt this was not taken seriously, perhaps because my husband is with me most of the time, and cares for me?  I don’t know, I do know I left the office wondering why that was just brushed off.  One reason she may have thought I didn’t need more discussion on this is because I was taking precautions.  I had my husband lock away all of my medication and only dispense them as they are prescribed.  I had him looking for more clues, other than just me balled up on the floor falling into an abyss.  Yes, I was cycling, so on the good swings I was able to try to set an emergency plan in place.  But on the down swings….well, that’s a different matter all together.  However, I cannot stress enough, if you have any mental health issue and feel you may harm yourself, try very hard to make a plan that will help you.  If you want to know more about what I did…please contact me, just look at my About Page.  It may not be everything, but I found it a great help that I knew I was helping myself in some small way even when things were spiraling out of control.

During the latest visit we did make a plan for my medication, but she wanted to talk with my neurologist to make sure the medication she put me on wouldn’t interfere with any other medication she had me on.  Finally, I thought, a Great plan.  She said she should know by Friday, April 11th,  and would be in touch.   That didn’t happen.  My husband called on Friday, Monday, Tuesday, Wednesday, Thursday….and Friday (when he called on Friday the 18th he learned the office was closed for Good Friday).  Each day he only got a recording to leave a message, he never talked to a real person.  I emailed the main office on Wednesday to reiterate that my husband was trying to get in touch, and no one had called him back.  I also made sure they were aware that he is authorized to speak for me, as I cannot talk on the phone.  (This is listed in my files, he has full power of attorney for me.)

My husband also talked with my neurologist.  She said the medication would be fine.  (I’m not sure if the psychiatrist ever actually got in touch with her or not.)   Thursday, April 17th hubby and I talked and decided we would ask my neurologist or general doctor if they would write the prescription for the medication.  Preferably, my neurologist because it is a medication she often prescribes.  (I had already decided I was going to change psychiatrist  but I needed to start the new medication now, who knows when I’ll get an appointment with a new psychiatrist.)

The plan for Friday was to call the psychiatrist first, trying to reach out one more time.  Then call the other doctors mentioned, and to get in touch with my therapist, and hubby’s therapist to see if they might have recommended psychiatrist for me to change to.   However, when hubby called, (as I said earlier) the psychiatrist office was closed for Good Friday.  Yet, she still had not returned any of our calls!  (yes, I am so disappointed in this woman, you have no idea!)  He also called my general doctor, and her office was closed.  He called my neurologist, and she was in!!!  Yay!  She also called in my prescription!  (she was already calling in a prescription for me for steroids to see if we can break this cycle of the killer migraines).  I must say, most of my doctors are WONDERFUL!  I love them, and I know they care about me.

These are just a few of the reasons that I’m firing my psychiatrist, but there is something else that really bothers me about the whole thing.

When I first saw this doctor I had a very good first visit.  It felt right.  Then when I returned for my second visit she seemed to have forgotten everything we talked about.  No, I don’t expect my doctors to remember everything from every visit, but I do expect them to look at my file and be a bit up to date when they walk in the room.  She met me by telling me that she was leaving the practice I was seeing her at, when I was referred to her I was told she was not taking new patients, but since she worked so well with my therapist  she would accept me.  I was conflicted about this because my therapist is with that practice and I like for my doctor and therapist to have a good working relationship.  But I felt very good about the first visit so I decided to follow her to her new practice.  (and when I say new, I mean, they were just starting it, so it’s a big deal for the doctor’s involved.  I realize this has to be a lot for her to deal with, but it shouldn’t be at the neglect of her patients).

Now that I think back on this, it bothers me.  First, it was questioned if she was taking new patients, and she decided to take me on because she likes my therapist so much….ect.   I was thrilled at the time.  Now I think, she should never have taken me on as a new patient when she knew she was leaving that practice.  She had to know, my first and second appointments were only 2 weeks apart.

I know this post is getting a bit long, but I feel I would like to say some good things too.  When I first saw this psychiatrist, I felt validated for the first time in years.  She understood how I couldn’t just exercise…ect.  She seemed to really understand my chronic illness and was willing to work with me.  We discussed that at some points I may have to cancel my appointments on short notice, she understood and set me up special appointments on her planning days, so if I couldn’t come, she wasn’t losing any money.  This plan was still in effect at her new office.  I only had to cancel at her new office ONCE, so I don’t think this should have been an issue; but I don’t really know.  There are 2 other big things that bothered me when she moved.  I have severe asthma.  She put an aromatherapy thing in her office, I could not breathe in there.  I put on my mask and got way to hot and couldn’t stop coughing.  We had to move to the conference room.  I was very uncomfortable there.  We were even interrupted by her husband and that made me feel very odd.  I know it is too much to ask, but after her extreme understanding, or so it seemed, at our first meeting, I kind of expected the smelly thing to be gone from her office when I returned.  I guess she doesn’t have any other patients with scent issues.  One huge thing, as you all know, I have a big problem hearing. this doctor talks very fast.  I ask her often to slow down.  She will apologize and then continue to speak at the same speed.  This is the reason I have to have my husband in my sessions.  I would prefer not to have him in there.  It takes more time, and I feel I’m just spending time going back and forth trying to understand things.

Now, we wait for a bit to see if she will actually return my husband’s calls next week.  If she does, he will explain in detail why we will no longer be in need of her services.  If she doesn’t, I will be writing her a letter.  At this time I’m not sure what other actions I may take.  I do feel doctors should be more responsible for how they treat their patients.  They are in charge of a person’s health.  A mental health provider could the that cog in a person’s life that changes a life forever….or puts it in a delicate balance of life and death.  Am I being overly dramatic here?  I don’t think so.  If I believe my doctor cares and is trying their best to help me, I feel better.  If they ignore me when I have made it clear that I am in a very tenuous state, I feel less like a human.  This is a huge responsibility.

If she calls, we will simply discharge her.  I can understand that she may be way over her head in the new office, that she may have hired the wrong front staff people….ect.  I feel compassion for her about all of this.  There may be extreme circumstances in her own life.  In a business, especially one of this magnitude, extenuating circumstances should have been relayed to the patient and taken care of by another doctor on call.  But she doesn’t even call???  No one called.

So now you know my whole story.

On closing….my therapist got in touch and recommended a new psychiatrist.  We have been in touch, and will see where we are going from here.  I’ll keep you updated on that.

Always remember, we need to be an advocate for ourselves!

If a doctor doesn’t treat you with respect, or if you are just uncomfortable in their care, and you have any way possible, change doctors!  I know some people just can’t do this as easily as I can.  I grew up in a very rural area, I had two choices for a general doctor.  No choices for specialist.  The nearest doctors of choice were over an hour a way.  (this may have been a major reason I was not diagnosed with Bipolar I Disorder as early as I might have been.)

Yes, I may have a mental illness, and recently I may have been very depressed because of my medication has not been working properly, but I am a human being.  Oh a better note, I am feeling much better (I know I need to get my medication straight because with Bipolar I Disorder I might feel fine one day and not so much the next).   Doctors still need to take patients seriously.

Yet, I realize that a lot of people will think, “She has a mental illness, is admittedly not stable, she is probably exaggerating about things.”  Or something like that.  I’m lucky I have someone (my husband) who can also help be an advocate for me and explain this is not “all in my head”.   But what if I didn’t?  What if I didn’t have the ability to just change psychiatric doctors?

There needs to be much progress made to help people who need mental health care.  (or health care in general) If they can’t afford it, they are often put on a LONG waiting list to see someone that the state provides.  They have no choice in doctors.  They are often lost in the system.  When you are having mental health issues, trying to navigate the system to be seen at all is extremely hard.  (Yes, I am speaking from experience).   Things need to change.  How can we bring about a change?

I’ve thought and thought on this issue, and I just can’t see how to make things better in this country.  Are the mentally ill meant to live a life of less?

Mental Health care (and general health care) in this country is great….if you can afford it!

Thoughts?  Ideas?  I’d love to hear them.

Dark and Silent – A day with a Migraine

On By WendyIn Chronic Illness, Meniere's Disease, Migraines6 Comments

headache 7

When a migraine really takes hold of me, it’s time for a day with no light and no sound.

Take my medication and try to sleep.  Oh but the pain, sleep just will not come.  A tiny bit of light maybe?  Oh no, not yet.

I must say I’m grateful that I can just leave my cochlear implants off and I’m in silence.  I don’t have to worry about sounds sending me into an abyss of pain.  My room is cloaked in darkness.  I do have to have nightlights, they all point to the floor, showing as little light as possible.  If you are like me and have Meniere’s Disease with hearing loss, you will understand why I must have some light.  There are TWO main reasons:

First, I cannot walk in the dark.  Literally, I cannot tell the direction I’m going in, often I can’t tell if I’m going up or down.  Walking in the dark, is simply not something I can do.  I haven’t been able to stand up in the dark for many years, long before I was diagnosed, or showed any signs, of having Meniere’s.  I remember being told I was just thought to be a little off.  I also get Migraine Associated Vertigo, another reason why it is not advisable to walk in the dark when having a migraine, even if I didn’t have other balance issues.

Second, I cannot hear in the dark.  Let me explain.  The only way I can hear…really hear anything, is with may cochlear implants.  If I don’t have them on, I can’t hear.   I have to see to hear.  I have to read my husband’s lips or the little bit of ASL (American Sign Language) that we know.  That’s the only way I can communicate.  Yes, he could write things down, but I’d need more light to read it than I need to see his hands talking to me.

After taking my rescue medication, then my backup medication when that didn’t work…I finally start to have some relief.  No I’m not pain-free, I’m just not lying on the bed with a huge ice pack on my head wishing that someone would just cut my head off!  The pain has gone from being very close to a 9 (10 is going to the ER pain), to about a 6 or 7.  Remarkably, this amount of pain I can deal with fairly well.  Don’t get me wrong, I’m not bragging that I can take the pain…Oh no!  This comes from the fact that I have Chronic Daily Headaches, so every day my headaches are on the 2-3 level.  I don’t complain until it hits a 5, and only then because I know it will be getting worse.  At a 5 I will often take something, but I need to be careful, I can’t take something if I’ve taken something for too many days in a row, this will cause rebound headaches.  I never want to have rebound headaches!  Before I knew about rebound headaches I took too much medication.  I hurt, I took something, that’s the way it works right?  But you can get to the point where your body says, OK, it’s time for you to hurt so I can have that pain medication.  It’s strange.  I know I’m not giving sound medical rationale about this, but that’s the way I think of it.

I’ve been told that today is a very beautiful day, with temperatures close to 80 degrees F.  The sun is shining and the flowers are starting to bloom, a great day to take out the VW Bug convertible (that I got a few years ago, and now I can’t drive…but I still enjoy it).   Instead of having a lovely day out with my husband, I’m closed up in my bedroom (I literally haven’t left this room in a week, or more.   I’ve had so many migraines and vertigo taking the stairs is just too risky.)

I’m only able to write this in small increments with my computer screen dimmed as far as it can go without being black.

Why is the Botox not working?  I have no idea.  It normally takes a week for it to kick in, but it’s been over a week.  I hope this doesn’t mean that this treatment has stopped working for me.  I’m not sure what we’d do next.

Days like this…well the week like I’ve had, makes me feel so useless and..oh I don’t know how to say it, I feel like I’m just alive, but I’m not living.  Understand?

If you have times like this, what do you do?  How do you start to feel useful again?  I feel it’s been so long since I’ve really been useful.  So many people wish they could just lie around in bed all day, never having to do housework, always having someone to wait on them…..but I tell you, it’s not really what they want.  Living like this is torture.  I want to be able to cook and clean.  Work in my studio.  Have a Garden.  But, it’s just too much on this body and mind of mine.  I say figure out something small, but I’m out of suggestions.  If I didn’t have this blog, and the blogs I follow….my friends in my computer, I would feel completely worthless.  Thank you all for giving me that gift.

I apologize that the pain is talking so much today.  May tomorrow be a more pain-free and steady day.