Tag: Meniere’s Disease

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?

A tiny little update

On By WendyIn Bipolar, Chronic Illness, Meniere's Disease9 Comments

After my last post I feel horrible I haven’t been back here sooner.

I’m not having a good time with the vertigo recently.  My dear friend, Mr. Meniere’s, has decided to settle in for a visit.  A long horrible visit…so this really will be very short.

Saw my psych doctor last Wednesday.  She is supposed to be talking to my Neurologist (headache pain specialist) about a drug we discussed putting me on.  (a good idea huh?)  But it’s taking a long time.  I did see her late on Wednesday so things probably didn’t get started until Thursday…but my goodness.  Well, I won’t get in to all of that.  I’m upset about that visit….but I’ll vent later.

I am having a better time of it.  Not cycling so much now, I’ve been pretty level for a couple of days now.  I’m reading more of the Buddha’s teachings, and it helps.  (I’m not pushing Buddhism here….I just get very comforted when I read his teachings and try to follow the practices.)

I really need to control my anxiety.  I know the vertigo is more out of control because of the stress.  It is my greatest trigger for Meniere’s.

I need to have emergency plans in place…just in case.  This helps relieve my anxiety about a situation I have no control over.  It gives me a little control.  For example, I have an emergency kit for when I have vertigo attacks.  I feel my severe vertigo attacks have fallen drastically since I created this kit.  I have one for home and one for travel.  It eases my mind.

When I started feeling suicidal, I knew it was my illness, but it didn’t really matter.  So when I cycled enough out of it to be able to really communicate with my husband, we made up an emergency plan.  I know where to call, or go if I feel I am going to hurt myself.  My husband put all of my medication away and gives it to me as prescribed so I will not….tempted when I fall in the darkness of my soul.  We have a plan.  It has helped me so much.  I now feel that I am understood.  My husband knows how I’m feeling, as much as he can.  He’s taking me seriously, and helped me to have in place a way to make it easier when (or if?) the dark lady returns.

Today, we talked about an emergency plan if my husband remains out of work.  We can’t wait until there is no money left, it will cost us money to leave here.  We need to know at what point do we need to decide to leave.  Where we are going, and how things will happen.  There are parts in there we are pretty sure about, but we need to solidify this plan.  I’m so anxious about our future I feel paralyzed.  I know that it is adding to my feeling so very ill.

So….I’m here.

I’m not on the computer a lot right now because of the vertigo.

I’m working on getting the psych meds straight.

We are working on an emergency plan if hubby doesn’t find a job before we completely run out of money.  (luckily we were able to get on a mortgage assistance plan, or we would be destitute before now.  But right now we don’t have to pay our mortgage because of this assistance.)   This will help me feel less anxious about our future.

I have much more to say….things I’ve been discovering about myself…and just thoughts in general.

Thank you all for the loving support you have shown me.  I have felt these emotions all around me, and it has helped so much.  We may not all know each other in person, but I promise, the loving thoughts sent from all of you have reached me.  And I am eternally grateful.

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.

This is my brain on Menieres

On By WendyIn Chronic Illness1 Comment

I can really relate! Extraordinary Spin-ster, a new blog dedicated to Meniere’s Disease, Anxiety Disorder, Panic Disorder, and ADD….be sure to check it out!!

 

itstita's avatar

I can really relate! Extraordinary Spin-ster, a new blog dedicated to Meniere’s Disease, Anxiety Disorder, Panic Disorder, and ADD….be sure to check it out!!  

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The hardest thing to hear….”There’s nothing more we can do.”

On By WendyIn Chronic Illness, Meniere's Disease19 Comments

I haven’t been posting on a very regular basis because I’ve been having daily vertigo.  Sometimes it’s a short bout of spinning that I can handle pretty well, other times it has been the horrific bouts that cause me to throw up for hours, and lose all bodily functions.  (I know you’ve heard the details before, I’m sorry for the graphic description)

Daily vertigo is so draining.  The constant disequilibrium is one thing, but the vertigo…it’s the most debilitating thing that has ever happened to me.  To have this just hit me out of the blue, leaves me with such fear.  This past week I’ve woken up with vertigo at least 3 times.  One time I was on the verge of throwing up, and I admit, I completely freaked out.  That bothers me so much.  I have been keeping my cool through the attacks, but then that happened, and I’m terrified.  How can I feel comfortable ever leaving the house when I know that daily I have these attacks?

We can’t be sure if the vertigo is being caused solely from Meniere’s, I also get vertigo from the Idiopathic Intracranial Hypertension (IIH), and Migraines.  I saw my otologist (ear doc) yesterday and told him everything that has been going on…..he was so distraught.  There was another doctor in the room with him from Turkey, and both agreed, there is nothing that can be done.

Some people have said I could kill the balance nerves, but that is not an option for me.  For a number of reasons.  At my age, it’s almost impossible to learn to balance with just your eyes…and when they say that you balance with your “just” eyes that’s not really right, you use the balancing nature of your muscles, bones, ect.  It’s easier to do this at a young age, children can often overcome the loss of balance from the ears.  But this 50 year old woman who has been using her ears to help balance for her whole life, and who has trouble with her hips and pelvis so her gait is off, well I would almost definitely end up bed bound having vertigo constantly. I’ve never been so overcome with emotion.  I just cried, I had a very hard time composing myself.  My doctor looked so tortured and kept saying he was sorry.  I told him he didn’t cause my ears to be like this, but I know he wants to help.  It hurt him so much to tell me he just couldn’t help.  He told me if he finds out anything that might help he will call me immediately.  I know how much he cares, and it pains me that my illnesses has made him feel useless.

I feel odd today.  I’ve felt so defeated and depressed lately.  It’s simple, I just didn’t feel I could continue to exist like this.  When you feel your life is only just existing, and that existence is completely miserable, then why are you existing at all.

Today, after learning there really isn’t anything medical that can be done, I actually feel like a weight has been a bit lifted.  I know I have to deal with this, I can’t just keep thinking that there must be something that can be done.  I’ve come such a long way in dealing with my vertigo attacks.  Often, I can stop them from getting to the most horrific stage.  It’s difficult, and it’s challenging, but it’s helpful.  I’m still stuck being very still, not allowing myself to look beyond an article just in front of me (if I focus further away I will spin harder), trying to stay calm, taking deep breaths, and telling myself over and over that it IS NOT REAL.  Of course, getting the meds in me as fast as possible has helped a lot too.  So now I know what I have to deal with.

Just-relax-and-stop-stressing-so-much

I know stress is making things worse and my normal exercises that I have come to rely on to reduce stress is not working, so I have to do some research and try something new.  I’m thinking about hypnosis, after we have income coming in.  I have a focus now….what can I do to reduce my stress? The stress of:

  • my husband being out of work since April 2013, and me not being able to work.
  • having my disability denied and now that we are in the appeal process they are saying it will take over a year before my case will even be heard.
  • my father just started treatment for liver cancer
  • the continued asthmatic symptoms without being able to get much relief.
  • an increase of migraines….is Botox no longer working, or are the migraines being caused by the IIH
  • an increase of IIH symptoms
  • breaking my foot
  • not feeling stable at all.  Not knowing where we may end up, not knowing what is going to happen…this is not good for me.  I do not do well when I feel like my life is up in the air.
  • not being able to be intimate with my husband…and yes, even with everything that is going on with me, I would like that part of my life back.
  • ……….that’s enough to list isn’t it?  yet, yes I can think of more.   (Deep Breath!!  In…Out…repeat)  OK, that’s a little better.

How do you handle stress?  Any suggestions.  I’ve done a couple of things, but more needs to be done.  My stomach hurts all the time….this cycle has to be broken.

Study on Meniere’s Disease….maybe you can help.

On By WendyIn Chronic Illness2 Comments

 

I was looking around for information about Meniere’s, seeing if I could find anything new, while on the Vestibular Disorders Association (VEDA) web site I saw a call for people with unilateral Meniere’s for a research study.  They are trying a new drug to help with vertigo.  I thought what a great way to possibly help yourself and others.  Unfortunately, this is for patients who have unilateral Meniere’s and I have Bilateral Meniere’s.  Hopefully, others will be excited about finding out more about this research study.

You can find all the information about the research study here:

Image
Click on the image to learn more about this research study.
http://www.menierestudy.com

 

 

An Accident leads to overcoming a fear…

On By WendyIn Chronic Illness, Meniere's Disease6 Comments
x-ray of right foot poster image from allposters.com
x-ray of right foot poster
image from allposters.com

On Monday, January 20th, my husband left for Las Vegas (I’ll explain more of this later if anything comes from it).  He left the house at 11am, his flight was supposed to leave at 1pm but it was late.  By 2pm he was on his way, and by 3:30pm I had broken my foot.

I keep thinking how nervous I was about him leaving on this trip.  He’s been away before and yes I was a bit nervous, but this time I was scared.  I just didn’t feel good about it.  Perhaps it was because of the many asthma attacks I’ve been having, perhaps it’s because I realized just how phobic I have become about so many things….I don’t know…but I know that I’ve had feelings like this before, and they seem to be almost premonitions.  Something didn’t feel right….and soon something big wasn’t right.

How did I do this?  Well, let’s see if I can explain, I had to explain it over and over and over…but I will admit here, I’m not 100% sure exactly how it happened.  When Stuart is out-of-town we move my essentials downstairs, so I won’t have to use the stairs while he is gone, I have plenty of food in the fridge, and I’m all settled on the couch.  Oh, and one big thing, I promise not to try to walk around the house without my walker, just in case vertigo hits out of the blue, or the disequilibrium knocks me off my feet. (we all know this has happened….often)  So, I got up to go to the bathroom, wheeling along with my walker.  Unfortunately, our bathroom doors are TINY, and we haven’t been able to find a walker that will fit through them, so I leave my fancy walker at the door and hand off to another walker in the bathroom.  The walker in the downstairs bathroom has little wheels.  The walker in the upstairs bathroom doesn’t have wheels, I’m used to it. I caught my foot on the little wheel and was thrown off-balance a bit.  The world swirled and I stepped sideways and fell up against the wall, only a few inches away, I just kind of leaned up on the wall but my foot turned, and I felt a SNAP!  I’m really not sure which foot hit the walker, or anything, it happened so fast, and I was far from being stable.

I knew somewhere in the back of my head that it was a break.  But I didn’t want to admit it.  I often turn one foot or the other, it always hurts, often swells a little, but is alright.  I just ice it over night and the next day it’s better.  So I packed it in ice and elevated my foot.  Then I looked at it, and it looked a bit too puffy….getting a little blue.  I touched it, it just didn’t feel right.  Dangit!  I was a bit paralyzed as to what to do.  Call an ambulance?  For just a broken foot?  Ugh!  And trying to talk to a 911 operator when you can’t hear them…well that was scary…but really I just couldn’t bear the thought of calling an ambulance for a broken foot.  That’s not an emergency.  I could feel my toes, they weren’t blue, I had sensation all over my foot….not an emergency.  And I was still a little bit in denial.  “Maybe it was a tendon just snapping over the bone.  It might just be a bad sprain….”  But as the night went on, I was more concerned.  I instant messaged a friend who I knew would help if he could, and he would at least calm me down.  He did calm me down, but he couldn’t come help, I understood, he has a pretty severe chronic illness himself and lives about 2 hours away.  Finally, I saw an old friend who I hadn’t seen in a long was on-line, so I gathered my courage and instant messaged her and asked if she could help me.  That was very hard.  She has a family of her own, a 3-year-old little girl….a busy life….and we haven’t kept in the best of touch.  Don’t get me wrong, she hasn’t forgotten me, she surprises me with cards and such, and we see each other on Facebook, but it hasn’t been the same since I’ve gotten so ill.  I haven’t seen her in person in a very long time, we don’t have long phone conversations, it’s different.  I asked if my foot was all swollen and blue the next morning could she take me to Urgent Care.  She said, “Yes!”  So the next morning I texted her…I had to go.

Another fear I had to face, going out in public.  Since I’ve been having so many asthma attacks I’m very scared to go out in public.  So many triggers out there, and only my inhaler to help.  But I did it.  We went to Urgent Care, and it was FULL.  A minimum of a TWO HOUR WAIT to be seen, not including if you need x-rays and such.  So we ended up down the street at the Emergency Room.  I was seen right away.  Then sent to X-Ray.  Then taken to a room…in the children’s ward (that was strange, but I guess they had an empty room there).  The doctor looked at the X-Ray and said I had a spiral fracture of the 5th metatarsal (right above my pinky toe), she said I had to see an Orthopedist specialist.  Then they wouldn’t let me eat or drink anything.  I was there for 7 hours at least.  Finally, the Orthopedic Surgeon came.  He decided surgery wasn’t necessary, and I could have a boot instead of a non-weight bearing cast.  I didn’t realize that there was a possibility of surgery, but I was so ready to get out of there, and I could tell my friend was anxious to leave, I didn’t even ask….just let me go.  Later I looked at all the paperwork, and there was a possibility I needed a pin in my foot since it was a spiral fracture.  They discussed putting me in a non-weight bearing cast, but decided not to because I would be at home alone.  If they put me in that kind of cast they would have kept me at the hospital until my husband came home.  After a little research I’ve learned this is the most common broken bone in the foot, and it takes a long time to heal because there isn’t a lot of blood flow to that area….*sigh*.  I’ll have x-rays again in a couple of weeks if it’s healing well – great, if not, surgery could still be a possibility.  I have faith all will heal just fine.

Whew!  What a day!!  After I got home and all alone, I realized I needed a change of clothes from upstairs, and someone needed to take care of Max, our cat…..so again, I overcame a phobia…I reached out again for help.  I texted my neighbor, she has a key in case of emergencies, and asked if she could come over the help me a bit….I’m a lucky person that I have a neighbor who is such a dear.  I cannot say how much I love and respect this woman!  It took a lot for me to ask her for help, but she came!  She helped, and even just visited with me for a bit.

Stuart came home the next night.  I had taken care of an emergency!  Somethings I probably could have done better, but I did it!  And I’m pretty proud of myself.  Stuart is less tense about leaving me alone now.  (FYI..I did tell Stuart what was going on while he was on his trip.  I thought about not worrying him, but that’s not the way we are, we communicate about everything, and it made it easier.)

Sometimes no matter how prepared you are, something might happen you just didn’t expect and you have to deal with it.  No matter how scared you are.

What’s up and on my mind…a Free Write…

On By WendyIn Chronic Illness16 Comments

Please note…I’m just going to write and not pay too much attention to grammar or spelling or anything like that, I’m not going to re-read because I don’t want to filter what comes out.  This is an experiment, something I sometimes do in my journal….let’s see what comes to the surface….

Acceptance is not the same as giving up, but if I’m not careful it can slip into that.  I’ve accepted my illnesses, especially Meniere’s with hearing loss, for a long while now, and I’m really ok with it.  I realize things aren’t going to get much better, and my not get any better….now is that giving up?  not saying I’m OK with it, but saying it won’t get better?  When my husband was worried because I had been feeling worse for a while he wanted me to think about going to the doctor and he said, “I just want you to get better.”  I got so mad and upset.  What?  Get better?  What delusional state are you living in?  Do you really think I’m going to get better???  I felt like he didn’t understand….then I realized…after a long discussion that he meant he wanted me to feel better than I had been for the past month, he felt something new was wrong and wanted me to check it out.  Then I thought….could I get better?  Have I given up?  and decided, yes, to a certain extent I had given up.  I was so determined to accept my life as it was, I had given up that it could be better.  Maybe the hearing can’t get better….well, the doctor has told me that much.  And possible the vertigo will never get better….but who knows for sure, I accepted my fate.  I’ve also accepted living in pain.  Hip pain, pelvic pain, Vaginismus, neck pain, arthritis pain….and my other illnesses….I accepted my fate, I’d live with these forever, but really, do I have to?  Yes, I’ve put these issues on the back burner because the Meniere’s, Hearing loss, and Migraines have taken over my life, but as I’ve found that my Migraines can get  better, I can hear better (thanks to the computers in my head) maybe not the same or as well as i once heard, but I can hear….why should I not believe some of my other issues can be helped.  No, I’d given up.  I’d given up on having a normal sex life, given up on being able to walk for any distance without being in horrible pain, given up on so much….  I feel better that I’ve accepted the things I cannot change, but I’m ticked off at myself for giving up on the things I could.  This has changed!!  I’m not giving up on getting better…the things that can get better….I’m not giving up on me.

I had a realization the other night.  I’ve been having full blown panic attacks lately…yes, feeling like I can’t breathe, my chest tightening….everything.  I realize most of these have been triggered by the loss of income in the family, then me being denied my disability claim, and I’m still mourning the loss of Sandy.  (yes, it’s been over a year and an half)  Losing a friend who was so close to me for 19 years has taken it’s toll on me.  I can honestly say I have not grieved for anyone more than Sandy except for my mother.  Maybe it’s because of everything else that has happened in the past couple of years, everything just building up on it…but I don’t think so…my Sandy girl was just so special.

I HEARD MUSIC!!  Yes, that’s right!  I actually heard music for the first time in at least 3 years!  Stuart was out of town for a job interview, and I was watching a movie, they started playing Credence Clearwater Revival’s Have You Ever Seen The Rain?  And I actually heard it!  I understood the words, I heard the music!!!  This new CI likes music.  I still can’t understand many spoken words on TV, but I heard music!  I didn’t realize I missed it so much.

http://www.youtube.com/watch?v=TS9_ipu9GKw

Well, I think that’s all for now.  I’ve been having a hard time keeping my CSF pressure stable, and today is a bad day.  My doctor raised my dosage, and I need to take my meds.  I also have to see a neuro-opthomologist.  (Yes another thing I had accepted, and felt like it wouldn’t get better, I know it won’t go away, but hopefully, it will get better)

My asthma symptoms were much better but not great, my doctor added another medication, and now I’m much worse.  Bah!  Hoping this will get better.

Oh, Stuart’s interview in Las Vegas went well.  We are going to go look around soon and then he will make a decision.  Lot’s to do…well, not as much as I thought, they said they will pay for the move.  : )  But selling the house when we aren’t here, that is a scary thing….at least to me.

Keep meaning to take pictures of my new Cochlear Implants…I want to take a photo of the new beside the old, so you can see the difference.  It’s amazing how much it changed in just one year….but I don’t think it will change that drastically again for a while.

More soon….thanks for putting up with my babbling.  AT least this has some coherent thoughts some of my journal free writing doesn’t.

DENIED!

On By WendyIn Chronic Illness, Disability6 Comments

 

Disability Knocks
Disability Knocks

Yes, I know MOST people are denied disability the first time they apply, but this is the first time I’ve heard this crazy reason!

I was found to be DISABLED….Yes!

But was Denied because I waited so long to file.  What?So what is too long?  I had to be disabled before 2010.   Again, What?  My disability date was November of 2009!  So what are they reading?  And how can you screw up that bad?

So the appeal has been started.  We do have a lawyer who is taking the case, and she is kind of scratching her head asking….What?? too.  This time I will have witnesses as to when my vertigo actually started interfering with my work.  The disability date I used before was the date I had the vestibular testing, since that’s a requirement for Meniere’s to be considered a disability.  However, in 2002 or 2003…I’ll have to look it up…I started having severe vertigo, was sent to the emergency room.  I was managing a Custom Frame Shop at the time, can we say Dangerous?  I was found on the floor in the frame shop in full spin, another time I made it to the bathroom and was in there for close to 3 hours throwing up.  Fellow employees from a different part of the store had to take me home more than once.  We had to close the frame shop many times.  I had to quit because of my health.

There are more stories like this…soooo, they denied my disability claim that started in late 2009, now they may find out I was disabled before that, and they have to pay from the date of disability.  Think it would have been better if they had just approved it the first time.

Even if I had not worked within the given time, it’s not fair to be denied.  I was lucky, my husband made enough money that I didn’t need disability, but times have changed.  I need this now.  I should have filed earlier, but I didn’t.  Now, I’m being punished for not taking money from the government when I didn’t need it.

So as I said before….What???

Learning how to hear….again.

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease4 Comments

I know, I got my processors on Halloween, and I’m just now writing.  What took me so long???  I wanted a picture.  But I still don’t have one.  Sorry.  I promise I will soon.

Here’s a link to a page all about my new processors if you are interested. http://www.advancedbionics.com/com/en/naida_ci_q70.html

Here's a photo from the Advanced Bionics site. My Naida processor is orange, not white.
Here’s a photo from the Advanced Bionics site. My Naida processor is orange, not white.

So far I’m pleased with these, but I have a long way to go with the right ear.  Presently everything sounds a bit high-pitched, or underwater.  When she first turned it on people sounded like Charlie Brown’s teacher, but I could understand some of the words.  I also find that most people sound like they have a very southern accent.  People whom I know do not have one, people who may not have ever been in the south!

I haven’t really started auditory therapy yet, mostly I’ve just been wearing the new processor every day, trying to get used to how it works, and simply hearing something on the right side. I’ve  been VERY tired lately.  I know it’s to be expected with the new CI, but exhaustion is a bit much.  I’m also having headaches, my headaches have been reduced so much since I’ve been getting the Botox shots for migraines, it’s difficult when I have one every day to the extreme I’ve been having.

photo from medicinenet.com balance disorders slide show.
photo from medicinenet.com balance disorders slide show.

The vertigo has been pretty predictable lately, every evening I normally have at least a small attack, and often more than one different times in the day.  I’m handling the vertigo well, but it’s so dang annoying, and frankly it’s starting to get a bit boring.  When it’s going on all I can do is focus on one spot, often with one eye closed, and tell myself it’s not real, all while keeping my breathing deep and steady….after a while it gets boring.  Never thought I’d say that about a vertigo attack, but the attacks I’ve been having recently are not the horrible fast spinning kind that last for hours.  Sometimes I do wonder if they would be if I didn’t get the meds in me fast and start this meditation type routine that I’ve come up with.  One day last week I had very fast vertigo I couldn’t focus at all, still I calmed myself down.  It has helped so much to tell myself, “This is not real. You are not moving, This is not real.”  But everyone has different ways to cope, and some may not be able to do this.  I know I would not have been able to just a year or so ago.

I realized something the other day….I gave up.  My husband was talking to me about things that have been going on with me lately and how we needed to talk to the doctor about it and how he wanted me to feel better.  He qualified that he knows it will never go away, but it used to be better.  I shut down.  I actually bothered me to hear he wanted me better.  Then I realized it was because I didn’t believe I would get better.  Ever.  I’ve gotten tired of asking doctors about things and hearing, “I wish there was more we could do”.  I didn’t want to hear that again, so I gave up.  This sounds odd after hearing how I handle my vertigo so much better, but I don’t believe the vertigo will get better.  I used to.

Now I’m in this realization mode, and fighting with myself.  I know I can’t give up!  I have a life.  I do want to get better.  Some of my illnesses may not get better, but I know some things can.  I KNOW this. But with the loss of income, and everything else, I have put myself last….and feel guilty every time we have to spend money on me….so I gave up.  I didn’t want my illnesses to sap all of our funds and energy.  It could get better, but it may not, and I got to the point where I just didn’t want to have my hopes shattered again, especially if it was going to take more of money, simply to be told it won’t get better.  As I write this and think more and more about it, perhaps I never gave up, perhaps I felt I needed to put me on hold.  The situation we are in right now is very stressful and taking much out of both of us.  I do not feel comfortable concentrating on me, I need to concentrate on us.  (this does not mean I’m being negligent about my health, if there is something I really need to see the doctor for, I will go.)

A realtor just left the house.  Yes, it’s time to sell.  I’m afraid we’re going to lose money on the house.  The market has come back a lot in this area, but some houses in our neighborhood sold for so little, it is going to cause our selling price to be greatly reduced.  No matter where Stuart gets a job we want to downsize, hopefully, we won’t have to wonder about our future much longer.  Another phone interview for my hubby in the morning…for a job in Las Vegas.  I cannot imagine living in Las Vegas. I wonder if they have decent doctors.  : )

I realize now that I’m rambling.  Yes, I do that when I’m nervous.  I’m still grateful for so much….our life may hold many questions right now, but it’s a mystery…soon to be an adventure, and I’m sure we’ll be happy with how things turn out.  We’ll be together, and that’s all that counts.