Tag: Fear

Round and Round I go…where or when I’ll stop nobody knows…

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

I feel like I haven’t been here in ages, and I probably haven’t.

I have to make this short, but wanted to give a little explanation as to why I’ve disappeared…when I have so much to say!  And give a tiny update.

On a Carousel at the NC State Fair
On a Carousel at the NC State Fair – I’m on the left, Jenn in on the right, and Stuart is in the mirror.  As you can tell, this photo was taken before I started having Meniere’s symptoms so often.  Taken Fall of 2005….I think.

I’m having a LOT of VERTIGO!  Luckily it’s not the severe- losing control of all bodily functions for hours -kind of vertigo.  It is much slower, and less horrific.  But it’s happening almost every day, often more than once a day.  I’m getting to the point where I’m terrified my worst fear may be realized…..at some point it won’t stop.

I am so happy I am handling it so much better than I used to.  I used to freak out even if it was a mini attack.  These attacks are more than a mini (one that happens for just a few minutes), but not a full blown severe attack.  Hard to explain, but I have a routine now that really helps.  When it starts, I take my meds, I get ice and put it on my chest or wrap it around so it hits my back and chest (I always get very hot and if I can cool down fast it helps).  {I keep these things close when I’m alone, when Stuart is home he helps, but I am always prepared.}Then I put something close I can focus on, usually a cup.  I hold it with my hand…and close one eye, that seems to help a lot….I tell myself….actually I think it is important to say this out loud if you can.., “This is not real, you know your hand is not really moving, so nothing is moving, This is not real…this is not real….”  I also try to control my breathing.  Normally, I start breathing short and fast, now I try to take deeper breaths and tell myself to calm…remember, it’s not real!  At times I chant, Stuart will chant with me…it’s very soothing, even when my body is telling me that nothing is as it should be.  I’m also very lucky that I now have Phenergan shots at home.  My otologist (for those who may not know, an ENT is an otolaryngologist – study of Ears, Nose, and Throat….my doctor just specializes in Ears…the oto- part.) couldn’t give me a prescription for injections, but my Migraine doctor can because she is a pain specialist.  The Phenergan shots help stop the vomiting, and that’s more than all right with me!!!  (I do need them when I have migraines too)  I do still get nauseous but I’m pretty sure that’s mostly because the acid in my tummy gets all churned up due to the stress.

OK…so that’s why I haven’t been around.

Now….why I might not be around…but I might….

My Cochlear Implant surgery for the right ear is next Wednesday, the 25th!  I’m not sure how recovery will go, we know that I can have the same surgery many times and each recovery is different.  I’m really hoping that this one is easy because I’ve developed an intolerance to narcotics.  So, no pain pills for me to come home with.  My husband has a call in to my migraine doc to see if there is any options.  I do have some meds from her for migraines but I don’t want to use those without her telling me exactly what to use and how often.

Depending on my recovery, I may be on here a lot, or I might not be able to be on here much at all.  Hopefully, I can post again before then.

My senior quote in high school: “By the time you figure out what makes the world go around, you’re too dizzy to care”   hmmmmm, prophetic?

Filing Disabilty

On By WendyIn Chronic Illness, Disability4 Comments

We finally filed the paperwork for disability, and two days later I got a packet wanting more information about how my illness(es) limit my activities.

This entire process has taken so much out of me, it is so depressing.  I do not think of myself as being so dependent and disabled as i really am.  Writing it out is taking its toll on my psyche, and making me very scared about hubby taking on more responsibility outside of the home.

I was just filling out the papers and it asked what I could no longer do because of my illness that I used to do.  It gave me one line.  Really?  One line?  I realized I could probably write a book!  I listed some of the most important things and then said there were way too many things to list in that area.  I should probably add a new page.

When I think about it, the question should be, what can I do now that I could before.  I used to do be able to do more than I do now.  Now, I spend most of my time in bed.  That needs to change, even if I just go to the couch.  But the headaches are happier in a dark room, and my bedroom has been made dark, no other room is.  I can still type on the computer…well some days.  Some days, like recently, I’ve been having low-grade vertigo for days.  I have been having a heck of a time.  Every day I feel like I can’t move my head, things move, just not very fast.  In the evenings it gets worse, much worse.  (perhaps my Intracranial Hypertension meds need to be adjusted?…who knows.

The paper asked me if I have any unusual fears or behaviors.   Wow!  That got to me.  I actually had to admit my fears.  My fears that I will have an attack in public, my fears that an attack will hit any time (of course these fears are very justified).

The Bath by cristalart at deviantArt.com
The Bath by cristalart at deviantArt.com

But then there is the fear of taking a shower or bath…yes, I am absolutely terrified every time I have to bathe or shower.  I’ve had an attack in both places, I never feel steady in either place, and I’m simply scared.  I can’t be in either without someone (Stuart) in the bathroom with me, often in the bath or shower with me.  Washing my hair is the worst.  Having the water on my head, the temperature change, my head goes crazy.  It doesn’t seem to make a difference if my hair is long or short, it is hard.  At least when it’s long I can go longer between shampoos, I can just put it up in a pony tail and no one knows.  (luckily I have dry hair).  I normally wash up at the sink, and when I can’t do that because of my wonky head, I use wipes.  Still, I miss my lovely baths.  I used to relax and enjoy a bath.  I’d light candles, read, or just soak.  It helped my sore muscles and it made me feel pampered.  Now, I’m embarrassed because I’m a bundle of nerves and crying just thinking about the fact that I need to take a bath.

Many days I’m afraid to get out of bed.  I will wake up and I’m just not sure.  OK, I feel like I could, but do I risk it.  The last couple of weeks have been vertigo attack after vertigo attack, I hate to be unprepared for an attack, and it’s easier to ride out in my bedroom.

I’m not trying to sound pitiful.  I don’t want that.  I am trying hard to make things better, and I have had a few decent days.  Yes!  Celebrate the good days!!!  It has just been hard writing down all my limitations.  It’s also hard telling them, well sometimes I can do this, and other times I can do this, but most of the time I can’t do most of it.  However, I do hope it gets better.  I even said that in the paperwork.  I do hope I will be able to do more, but I know I will always have severe limitations.

Funny thing….when they asked what I used to do that I can’t do now, I just realized I didn’t say “Hear”.  Ummm, you would think that would be the first thing I thought of…but no..?

But that’s another story.

I have a confession…

On By WendyIn Chronic Illness12 Comments

For over a year I have been clinically depressed.  I have had some small doses of mania in there, but mostly I have been shrouded in a black cloth with no hope of seeing the light.

photo by click tongue, at deviant art.com
photo by click tongue, at deviant art.com

I realize now that my psychiatrist was going through some issues of his own, and didn’t pick up on the fact that my depression was more than what I should have felt.  At one point he told me that he felt like he had done all he could for me and I should see someone else, I could not hear that he was looking out for me, I only heard that I was losing something else in my life.  He had been my doctor for close to 12 years, I felt I was just being tossed away.  So, I ended up staying with him.  It eased my mind, but didn’t make me better.  Yes, I had many things happen that gave me a reason to be depressed, but not as depressed as I was.  I wasn’t acting like me.  I really don’t remember much about 2012, I remember some horrible highlights, but not the good moments.  We all know, that is not me.  I normally cherish every moment I can, and look at things realistically, not escalate them to the point that I can’t see past the hurt.

The mania manifested itself as anger.  I was so angry at times, and I had no control over it.  I hate that Stuart was the one who had to be on the receiving end of all this emotional turmoil.

In 2012 and part of 2013 I cried every day.  Yes, part of it was losing Sandy, but it started before that.  I think the catalyst that started all of this was my diagnosis of Idiopathic Intracranial Hypertension (IIH).   I finally knew I would never get back to the point I was at the year before.  I would never feel “normal”.  There were a lot of emotions that went with this, a lot of realized loses.  I never expected to become a completely “healthy” person.  I’ve never been one, why would that change now?  But something snapped, and I no longer felt as positive as I had.  My new psychiatrist thinks my medication had not been working as well as it should even before then, but I was handling what was coming my way.  The diagnosis just pushed me past the point of helping myself.

I won’t go into everything that happened to me last year.  I will say there were some major things that I simply could not deal with.  However, I didn’t realize it then, I thought I was doing rather well on most accounts.  I knew there was one thing that was eating me up and sent me spiraling out of control….  I posted a poem about family.  How I wasn’t very close to my biological family and I was so happy I had a family with Stuart.  I was not saying it was anyone’s fault that my family and I don’t see eye to eye, it was really more about my love for my chosen family.  Well, a member of my family saw it and sent me a comment out of the blue.  This is someone I used to be VERY close to, but now she hates me and slanders my name to anyone who will listen.  I have not heard from her for about 10 years, yet she says my friends here don’t know me.  She says I’m evil….ect.  I never expected to hear from her again, but there it was, a comment from my niece.  She is 3o years old and still holds a grudge over something.  I don’t know what, and no one will tell me.  I have a feeling it is something from my very unstable Bipolar days, but I don’t remember most of that.  I was literally a different person while that disease had hold of me.

Now I have a new psychiatrist, and after one visit I felt like a weight had been lifted off of me.  I felt validated.  She understood my illnesses without me having to explain them.  She saw I have IIH and immediately said, “You can’t even exercise.”   THANK YOU!   Other doctors have said, “if you could exercise”…..blah, blah,blah.  It makes it sound like I choose not to exercise.  Not that I really can’t.  I will have excruciating pain, and will pass out.  I have figured out ways to do some weight-bearing exercises.  But I have to go slow.  I cannot do cardio, if my heart rate gets to high, I’m out.  She increased one of my medications.  And I am feeling better, but I think it needs to go up a little bit more.

However, I am seeing the light at the end of the tunnel.  Right now it’s just a little candle, but it’s leading me out of the dark.

light at the end of the tunnel....photo from deviantart.com by zoop zoop
light at the end of the tunnel….photo from deviantart.com by zoop zoop

I have good thoughts again.  I am not crying every day.  My anger is much more under control. (I know my husband is very happy about all of this.)  In short, I’m feeling more like me.

I appreciate what I have.  Even when I’m stuck in a dark, silent room because of my migraines I am grateful I can get out of the light, and have a roof over my head.  When the world is spinning and I feel like my stomach is going to come out of my mouth, I am grateful I have a safe place where I can ride out the storm.  I may not be able to walk unaided most of the time, so I’m very grateful for my spiffy red walker, that is also a seat.

I’m grateful for my dear friends who read my rantings and support me so much.

This past Tuesday was my birthday.  I received more birthday cards than I think I ever have since I’ve become an adult.  Some made me cry (in a good way), some made me smile and feel all warm inside.  One I don’t believe the sender was thinking, or perhaps they don’t realize my hearing limitations, it played music.  I can’t understand music.  Stuart had to tell me it played Happy Birthday.  *funny*   He thought it was rude, I really think it was just a matter of not understanding.  Or wishful thinking.

“Ow! Ow! Ow!”

On By WendyIn Chronic Illness15 Comments

I was awakened, after being asleep less than 2 hours, by hearing the words: “Ow!, Ow!. Ow!”.  Imagine my surprise when I realized the words were coming out of my own mouth.  Suddenly I realized just how much pain I was in.  My head was at an odd angle and my neck was screaming with pain, my head was throbbing, and my stomach and bladder were causing extreme discomfort.  As I hobbled to the bathroom I found the words, “Ow!….” continuing to come from my mouth.   (Funny thing, I can’t really hear me say it, but when I woke up it really did sound as if the words were coming from outside my body….strange how deafness works sometimes.)

I stretched my neck and put ice on it and it felt much better, my head was also starting to ease some.  The pain in my bladder and stomach were a different story.  My stomach literally felt like it was being eaten from the inside out.  Over production of acid is not a pleasant feeling.  I tried to eat a little something to calm the pain down, I took extra medication for my acid reflux, but it takes time to work.  I’ve never had it so bad before, I could not touch my stomach without it causing more pain.  I would love to have been able to take Maalox, it was always my go-to fix when my stomach was acting like this, but unfortunately I haven’t been able to find Maalox or any medication like it that I can take, they all have something that will cause my fructose malabsorption to attack.  I’m happy to report after a couple of days of a pretty bland diet, and extra acid reflux medication, my stomach is once again pain free…..for now.  I do try hard to not eat anything that will cause excess acid production, and I don’t think I did eat anything offending before this, however, stress can also cause excess acid production, and the pain from my bladder was causing me much stress.

When I first saw the doctor here I was having pain in my bladder and she tested my urine and found nothing, I have an irritable bladder and we decided it was just spasming.  So when this pain started I thought it may be the same.  Unfortunately, this pain kept getting worse and worse.  Every time I moved it hurt.  Sitting was very painful, so was walking.  I’m sure everyone who’s ever had a UTI will also know that I was having to go more than usual, but couldn’t urinate once I got in the bathroom…and it was very painful.  All of this started on Sunday, the 3rd, I had just finished my antibiotics and steroids for the bronchitis 2 days before.  I couldn’t believe I had an infection again. I upped my already large amount of water I drink, trying hard to flush things out.  By Thursday, the 7th, I was convinced it wasn’t irritable bladder talking, something was wrong.  So off to see the doctor again.  Unfortunately, the doctor I’ve seen before is out on medical leave. (I hope she is alright, I mentioned before that she had pneumonia last month, so I’m a bit concerned.)  I saw another doctor in the office.  Not someone I really want to see again  I felt like he talked down to me, as if I was not able to understand things.  Stuart thinks I’m a bit too sensitive, and maybe I am, but this visit started off wrong (and Stuart later told me that he didn’t have a good feeling about this doctor either).  I told the doctor I have profound hearing loss and could not hear him.  He raised his voice a little, but didn’t look at me when he was talking, it didn’t help when I did see his mouth as he had a lot of facial hair and I couldn’t see his lips well enough.  I had to rely on Stuart to tell me what was going on.  He asked if I’d been running a fever, I explained that my normal temperature is 97.4F, and it has been around 99F recently.  He said, that’s not a fever, everyone fluctuates. (Then why ask me??)  I told him about just finishing antibiotics and just couldn’t believe I had an infection so fast….he says that antibiotics don’t stop you from getting something else….but it was the way he said it, as if what I said was stupid.  I never said they did, I am just overwhelmed that I’ve been sick so much recently.  I asked him about a medication I have for irritable bladder that is expired and wanted to know if I should get a new prescription….he went into this long tirade about how medicines don’t explode after the expiration date, and how there have been studies that medication that hasn’t been opened is good for years after the expiration date. I was so confused at how he was talking to me….and yes I heard most of that.   I told him that I know different chemicals have different half-lives, and I didn’t know the half-life of this medication.  Well he just went on and on about how drugs are not food and they don’t just lose it because of the expiration date.

He did examine me, but I didn’t feel that he listened to me very much.  That’s ok, I talk too much when I’m nervous anyway.  He told me my urinalysis was negative, but that could be because I was drinking so much water it caused it to dilute the urine too much.  He said I had all the classic symptoms of a Urinary Tract and Bladder infection so he was going to treat me for it.  He gave me an antibiotic specifically used to treat this type of infection, and told me if I wasn’t better in 48 hours to call the doctor on call or I could wait until Monday and call him.  Yeah, that’s not going to happen if I can help it.  I’m feeling better.  Not well, but better.

On another note….I’m so very proud of myself today!!  I took a bath by myself!  I even washed my hair!  I haven’t taken a bath or washed my hair without Stuart’s help in a very, very long time.  I’m thinking over a year.  Don’t worry I wasn’t being irresponsible.  Stuart was in the house and on alert for my call.  He also just couldn’t stay away the whole time and came in to check on me.  But I did fine.  A little wobbly, but that often happens with temperature  changes (cool room, hot water).  Or it just happens any time….heck most of the time…so I’m getting pretty used to it and how to handle it.  Being extra cautious, have hand holds, non-slip surface under my feet…..

(at this point I got too hot while writing this and started to feel funny, so I had to put it down.   Today, Tuesday February 12th, is the first day I’ve felt like coming back to the computer.  I think I’ll end this post here  If I start where I left off I’ll be writing another VERY long post….so I’ll have to write more soon)

I got lost!

On By WendyIn Chronic Illness, Pain9 Comments
Flying Brain by Pixelnase
Flying Brain – photo from deviantArt.com created by Pixelnase

Throughout my journey having chronic illnesses I’ve fought hard to not allow my illnesses to define me.  Yes they are a part of me, but they aren’t all of me.  I worked hard to keep some sense of normalcy in my life…and to try my best to keep true to me.

I feel after everything that happened this past year….and not all of them had to do with my illnesses…I lost myself.  I became the sick person.  I stopped trying to be me.  I stopped posting regularly, I stopped doing my art, I stopped cooking (partially because I had a dizzy spell while cooking and almost hurt myself, but I’ve been to scared to start back)….I’ve been living in fear and self loathing.

2012 was one of the hardest years I’ve lived through, (topped only by 1993, the year my mother died).  I had 2 new chronic diagnoses, my dearest friend and constant companion of 19 years died (yes I am talking about Sandy), I had contact from someone I’ve loved unconditionally who I haven’t heard from in years and the correspondence was filled with hatred….just true and deep rooted hatred.  It would be hard enough for me to deal with anyone hating me, but this person….well the wound cut deep.  It’s so hard to explain.  I don’t remember a lot of my life before I got my bipolar stable, and I’ve changed so much since I met and married my husband, and since I’ve been sick.  I love me…me as a person.

But me as a person was lost.  I didn’t realize it until we came to Tucson and I got so sick.  Not just my normal chronic illnesses, but more and more.  I had a cough that wouldn’t go away…I’m still coughing some.  I finally saw the doctor, and I had bronchitis and Asthma.  I was born with Asthma, so I’ve known it was there, but supposedly I’d “grown out of it”.  I would have an attack if I got around someone with perfume on, or someone smoking, or around things I’m allergic to.  But now, I’m dealing with it every day.  And unfortunately, I had more vertigo attacks in November than I had the entire year combined.  I’ve also been having a huge problem with my GI system.  I know my food issues and I’m careful, but things sneak in….and I had no idea….still I’m having bowel issues.  And I’m gaining weight.  I’m back to being 5 pounds from my largest weight.  And that’s way too much for my short body.

It has just been too much.  More illnesses.  More conflicts to deal with.  More being stuck in bed.  I got lost and didn’t even know it.

I was lying in bed recently and realized how much I hate me.  No, I don’t hate me as a person, I actually like the person I’ve become.  Adversity really does create good people.  (and I think I am a good person)  But, me…my body….I hate it.  I’m larger than I want to be, or should be.  I have no energy, I’m sick ALL THE TIME!  I feel my body betrayed me. And I don’t want anyone to see me when I’m ill.  When I do actually get to see someone, I try my best to look my best.  I know this probably causes a bit of confusion for people, I don’t look sick when they see me, so how can I be so very sick.  I remember one day when  friend came to visit with her 2 children.  I loved seeing them, but I started to feel very worn out and dizzy before they left.  I tried so hard not to let them see.  Soon it was time for them to leave, Stuart and I walked them to the door, arm in arm….and when the door was closed, I collapsed.  But I couldn’t let her see.  I think I’m afraid if people see how sick I am they will shun me, and I will lose all my friends.  But really, I think I’ve lost most of them anyway.  I’ve hidden away.  And I don’t think I could stand for someone to see me really sick.  I’d rather be with just Stuart than for others to feel uncomfortable because I’m sick.  Gaining weight hasn’t helped.  People expect sick people to be underweight.  Instead I’ve gained about  60 pounds.

So, now that I know what has been happening to me, I am determined to get me back.  The inner me.   My blog was very important to me, but I allowed someone to scare me away from it.  I can’t do that.  I have to write and reach out to those who can help me and those whom I may be able to help.  This is such an important part of me.  My art has been an important part.  I wanted to have something I did consistently….but I’ve failed…I need to get that back.  I need to do something that is productive and useful.  I’ve felt like a useless burden for too long.  I found out about a few charities in my area who knit or crochet blankets, scarves….ect….for needy.  One charity that really spoke to me is one that donates to foster children, so they will have something special that was made just for them.  (as many of you may know, Stuart and I had planned to be foster parents but ended up not being able to because my illness got so much worse).  Foster children hold a special place in our hearts.  The charity I found makes items for foster children in a neighboring county, at some point I would like to see the same type of charity started for the county we live in.

So here’s the beginnings of a plan for me.  Begin doing something that will make me feel more like I’m a contributing member of society, learn to love my body no matter what size it is or how sick it is, stop listening to old ghost from the past and hope they can move past their hate and find a happy life, learn more about dealing with my new diagnoses, and learn American sign language.

I didn’t mention, I haven’t been able to hear out of my right ear…with my hearing aid…for about a month.  So we really need to learn ASL.  We will be starting a class here in Tucson next week.  It is a beginning conversation ASL class.  We will miss the last couple of classes, but feel it will be worth while.  This is through a Hard of Hearing and Deaf group, many of the members are deaf or severely hard of hearing, so I shouldn’t have a problem with not being able to hear in class.  (Stuart talked to the teacher and she assured him it wouldn’t be a problem, and many people who have Cochlear Implants are members there too.

 

It’s so bad…

On By WendyIn Chronic Illness, Meniere's Disease10 Comments

This is the third attempt at writing this post.

So I shall not try to explain things, or guess at things, I’m just going to tell what is happening.

Vertigo!!!  Nearly constant.  mini spins, mid-line spinning, and horrendous attacks.  When I was diagnosed with Meniere’s I was told it could be one of the worst things you can get that won’t kill you, but you may wish it would.

For the past few weeks, I wish it would.

I’m so miserable.  I can’t walk without aid, and then it’s very difficult.  I often can’t move my head without going into a full swing.  Right now I’m having a decent moment, so I’m trying to write.

I’m scared.  I went to a doctor here, and he thinks it’s allergies.  (I’m not so sure, I take 3 different meds for my allergies.)  He put me on steroids and gave me drops to reduce the inflammation.  No infection was seen.  I feel have been worse since starting the medication.  I’m supposed to see him again on Friday, the 21st, but Stuart is calling him tomorrow.

I can’t be left alone.  We are having a hard time.  Stuart needs to leave to go grocery shopping and such, but it’s almost impossible.  He left for a bit last night to shop, and I ended up spinning and terrified.  I called him, but of course I could hear when he answered, I just kept saying help.  He found me in a lump on the floor.  I know it scared him as much as it did me.  I am not prepared to take care of these attacks by myself.  I know I have, but it is terrifying even with help.

We came to Tucson hoping I would feel better here.  Oh how wrong I was!  I never thought I would feel worse!  The same maybe, but not worse.  I’ve seen family once the whole time we have been here.  I haven’t seen any friends.  I’m just so sick.  I often can’t even move my head.

I want to be home where my doctors are.  I don’t know if Tucson is doing this to me, or if it would have happened any way, but either way, I want my doctors!  But now, I don’t know how we would get home.  Riding in a car is torture.  I can only imagine what riding in a plane would be like.  I often can’t lift my head without spinning very fast.

So that’s all I can write for now.

I made a huge mistake, I should never have left NC.  Having family and friends close here is nice, we do have some people we can call on…but this is new to them, how long would the charity last?  At home we don’t really have a support system….but I have my doctors….and that’s important!  If I could have the support from those here, and my doctors in the same place, I would be a much happier person.

Anyone reading this who are close to us now.  Stuart could really use some help….it’s hard for him to admit, but he is overwhelmed by all of this, I can tell.

(also my migraines are back with a vengeance.  I think the Botox has worn off.  It really seemed to help for a while!)

 

 

I’m so Grateful for my Emergency Kit!

On By WendyIn Chronic Illness, Meniere's Disease8 Comments

I always hoped I’d never need it.  When I made up my emergency kit it was more a peace of mind thing, not a real thought that I’d ever need it.  On Wednesday, I was so grateful I had that emergency kit!  (TMI -This post contains information that may be too much for some people.) 

The day started off so wonderful.  You can see that in the last post….but later that afternoon I was hit with an attack, and I was in public!  We decided to go out and check out a few stores that carry allergy friendly foods, but we were hungry and thought we’d grab a bite to eat.  (yes I know, too much food out…too much sodium! But I had steamed chicken with vegetables and rice, no sauce….I ordered smart!)  We were sitting in the restaurant and Stuart pointed out something to my left and over my head, I glanced at it and everything spun around.  It scared the mess out of me!  First I started to panic, then I felt it was slowing down.  I thought it was Migraine Associated Vertigo and would pass after I took my migraine medication and emergency pills.  Boy was I wrong!  I took the pills and things didn’t get better.  I was getting sick.  Very sick, and the world was spinning faster and faster.  I handed Stuart my purse and asked him to get my emergency kit.  I needed to cool down, and I needed something to throw up in (just in case).  I have cold packs in my emergency kit that turn cold when you twist them…or hit them really hard.  This was a wonderful thing.  I needed to cool down my core fast.  We left the restaurant as soon as I could stand.  It had slowed down so I thought the medication was finally working and we could get home with minimal discomfort.

I was VERY wrong again!  We drove a ways fairly well, then the spinning got so much worse.  I couldn’t stand the car moving.  I asked Stuart to stop the car, he couldn’t stop where we were, and I started to panic….”Please just stop the car!”  It was torture.  I was actually screaming before he could get stopped. He stopped.  Later he told me he was not in the best spot. It was pretty public and he knew I’d feel uncomfortable. Frankly, I didn’t care, nor did I notice. I was throwing up (thank goodness for those little garbage bags I packed in the Emergency kit), and I was losing control of my bladder. I was devastated. We were in Stuart’s father’s car, it had just been detailed….I mean like an hour before we left in it….it has leather seats! How could this be happening to me, in my father-in-law’s Lexus? (luckily it was his older car, but still, leather seats!!) Stuart swears when he went to clean it up, there was nothing on the seat, and no vomit anywhere. I did miss some the last time and got it on me. I’m so glad I was wearing a reusable pad, I use them for my menstrual cycle, but I also use them most of the time in case I sneeze or cough and pee a little.

We got home, and got me inside. I collapsed on the couch and passed out. I woke up an hour later gagging, but didn’t throw up. My body was spasming, it feels like I’m convulsing (not that I’d know what that feels like first hand), this lasted what felt like hours. I got very scared. I was having a hard time breathing with the spasms, and for the first time during one of these attacks I was afraid of dying. Then i passed out again, but only for a few minutes. When I came to, I decided I wanted to try to get to the bed. We succeeded. Not without much difficulty, but I was out after that for a few hours.

I know most of you have heard my horror stories of my vertigo attacks before, but the main part of this recount is how much my emergency kit helped. In it I have cold packs (to cool me down), small trash bags (to throw up in), large Ziploc bags (to put the soiled items in…and bags that have throw-up in them), wash cloths (to wipe my mouth, and help cool me down when they are wet), extra meds (we always have my emergency pills on us, this is an extra safe guard and it has more meds than I usually carry), a card explaining what is happening to me…and I keep a water bottle with me (normally this is just to drink from, but when I’m having an attack it helps to wet wash cloths and I need to rinse my mouth).

I will never think I can go without that kit again. I was recently thinking it was taking up too much room in my bag, no more! If I go out with nothing else, I will have my kit!

I’ve been working on this post since Thursday, the day after it happened. I’ve had days and days of extreme disequilibrium. I couldn’t move my head at all without seeing the world move. It was like it just didn’t keep up with my head….strange. I just started walking some unaided yesterday. Today I feel better and can get around by myself, but I still feel a bit wobbly. I’m pretty sure this wasn’t just a Meniere’s attack. My hearing in my right ear did drop significantly, and hasn’t returned to its normal level…that’s weird for me, normally after the attack ends the hearing comes back…at least almost to where it was. We think I had another spinal “blow out”, and my Cerebrospinal Fluid Pressure (CSF) dropped. Stuart suggested the first night after the attack to not take my medication that controls the high CSF, it’s a strong diuretic and I couldn’t afford to lose any more fluids. But I started taking them again the next day after I was sure I was well hydrated. Then things didn’t get better. I was scared that I would feel that way all the time. I was having a big pity party for myself (sorry I didn’t invite you all). Yesterday morning, Sunday, I woke up feeling much better. I took my CSF medication, then I got up and fixed myself some breakfast. After making breakfast I turned and the world spun, dang-it! But it was at that time I realized my CSF pressure was too low. I had all the symptoms…the wooshy head, a headache when standing..ect. I went back to bed and lied down flat and the symptoms lessened and went away. Ah…yep, low CSF. So yesterday I spent the day lying flat. I’m holding off on the high CSF medication until I get signs of high CSF, then I’ll ramp back up on them.
Today I’m feeling much, much better, but still weak. My main goals for the day are a shower, and finishing this post…not necessarily in that order.

I’m sure I’ll feel better and better. The weather here is still gorgeous. We had an overcast day, but it was still nice. Today we have the windows open and are enjoying the fresh air.

Migraines, Vertigo, Disequilibrium, Pain – mix and repeat often

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain12 Comments

Where have I been you ask?  Or perhaps you haven’t noticed (don’t tell me, I want to think I was missed) I haven’t been commenting as much on other blogs, or chatting away on mine (I know for a while I’ve been a little silent here so you probably didn’t notice), I haven’t even been able to answer emails in a timely manner.  I logged on today and I had over 230+ emails in my inbox.  Normally there are about 30…so how many days has it been??

I’ve been much sicker, if that’s the word to use, lately.  I’m not really sick, it’s my chronic stuff, plus a little oops added in. First I’ll tell about my oops.

I know in my last post 30 things you may not know….. I mentioned how hard it is for me to wash my hair.  It’s normally easier in the bathtub than the shower (I’ve fallen too many times in the shower), but I’ve decided that my bathtub is evil.  I’ve had heart palpitations in the tub and nearly passed out, I’ve slipped a few times trying to get out, once I smacked my head against the wall.  My latest fight with the tub?  I pulled the tendons in my left ankle, and knocked everything out of whack on that side from my foot to my lower back, while I was lying in the tub.  Yes, I said, LYING IN THE TUB!  Only me right?  Ok, it was a little more than just lying still.  I had scooted down in the tub to rinse my hair, then I pushed with my feet to scoot up – my left foot slipped and went in a direction it shouldn’t have.  But I must say, it really didn’t hurt. When I got out of the tub I could stand fine as long as I didn’t go up on my toes.  So I’m thinking, no big deal.  Then Stuart looked at my ankle and said, “Oh My!”.   My ankle was very swollen!!  My lower back hurt, but my ankle really didn’t.  If you touched the swollen area it hurt, but not much.  This happened last Friday night.  On Wednesday the swelling was down and I had a massage, she helped the leg and back, but last night my ankle was swollen again.   (not that I’ve been on it, I had vertigo all day yesterday so I was in the bed.)  So now you know.  I am afraid of my tub and shower….makes it pretty hard to keep up personal hygiene, but I manage….thanks to that darling man of mine.

What else had been causing me frustration and just plan fear lately?  I was supposed to have the Botox shots for my migraines on the 18th, my doctor was sick and they had to reschedule….they wanted to make the appointment in November!  We are leaving for Tucson, AZ the last week on October, we won’t be here in November.  So they scheduled it for October 20th…I cried.  I had the worst time with migraines this past month.  Right before my period started the pain started…they gave me special medication for that time of the month, it didn’t work.  I had 15 days out of 20 were spent in a dark room, often without any hearing device on because the light and sound would make me throw up.  Throw in some vertigo, and we have a great party going on.  Luckily, the appointment has just been changed to October 3rd.  This should be during my period, so it will be a real test.  Big problem now?  If it works I need to have another shot regimen in 3 months, we won’t be here.  I’m not sure I can find a neurologist in Tucson who would be willing to see me just once to give me Botox injections.  Actually, I doubt I will be able to, so it will be more like 5 months between injections.

Recently I’ve been having more vertigo, and constant disequilibrium.  Frankly, it scares me.  I’m pretty sure some of this is Cerebrospinal Fluid Pressure.  We changed my medication that controls the high pressure to a times released form instead of the kind I have to take numerous times a day (I kept missing one).  Since I’ve been on this new version of this medication I’ve been having symptoms like I did when my pressure was too low.  I started back on the regular form of the medication yesterday, I hope this really is what’s wrong.  Because the vertigo is scary.  I’m proud of myself about how much better I’m dealing with it.  I don’t panic as much, I’m sure I would if it was a severe attack.  My biggest fear I have is that when a severe attack hits it will never end.   I’ll give you an example of my days…Yesterday I woke up to the word spinning, slowly, but still spinning…this went on all day.  Luckily, I was able to sleep through some of it.  Then when it actually got to be bedtime, I couldn’t sleep.  So many things going through my head.  I kept thinking, something doesn’t add up….but I’m not sure what…at least I finished Uncle Tom’s Cabin…and still laid awake until 5am.  Today, I’m not spinning, but I can’t walk straight.  I can’t move my head at a normal speed or I will fall down from the disequilibrium.  In the past 48 hours, I’ve been to the bathroom once unaided.

OK…I know this is another venting post.  But I’m scared.  What if the change in medication doesn’t work?  Then why is this happening?  We’ll figure it out, or I’ll learn to live with it!  Right?

The other night I was talking to Stuart and told him that sometimes I envy people who don’t have to feel like I do.  Of course, he said that’s natural, part of self-preservation and all that….  I then told him, I would gladly be the only person in the world who had to feel this way if no one else ever did.  And I mean it.  The thought that others go through this is heart breaking to me.

The Lorax
photo from smh.com.au

I do have some good news about my hearing!  (unfortunately I had to cancel the last 3 appointments I’ve had with my audiologist because I was too ill to go, so I can’t tell you what she has to say, but I have some Wow! news.)  Stuart got The Lorax DVD from Netflix and we curled up in bed and watched it on the computer.   I used the direct link cable and linked the computer sound up to my processor.  I didn’t expect to hear any better than I hear the TV, I thought I’d mostly read the movie, as usual (thank goodness for closed captioning!), but this was different!  I heard the movie!!  I heard the characters the way they were supposed to sound!  I really heard it all, just right!  Isn’t that amazing?  That gives me hope that one day my CI will give me sounds that are normal.  Right now, I hear better with it than my hearing aid, but sounds are a bit off, however, I understand things more.  It’s coming along!  And The Lorax is my new best friend!

 

Invisible Illness Week – 30 things you may not know…

On By WendyIn Chronic Illness, Disability, Meniere's Disease10 Comments

September 10 -16 is National Invisible Awareness Week – If you’d like to get involved check out the official site. 

30 things about my illness you may not know.

(warning, some answers may give too much information, but it’s not detailed)

See, I don’t look sick. This photo was taken in 2009, right before my first ear surgery.
  1. The illness I live with is:  The main illnesses I live with are Meniere’s, chronic Migraines, Bipolar I disorder, and chronic hip and pelvic pain.  If you are interested in my other illnesses please see the the tab above titled The Ants That Bite.
  2. I was diagnosed with it in the year:  I don’t remember any more.  I think I was diagnosed with Meniere’s in 2001, Migraines (I’m not really sure, I’ve had doctors tell me on and off since my teens that I have migraines, but they became chronic in my late 20’s…I’m 49 now), chronic hip pain and pelvic pain – they haven’t figured out what is causing all the pain, so no diagnosis.  Bipolar I – 1990 then was told they were wrong – re-diagnosed in 1994.
  3. But I had symptoms since:  Meniere’s – the first attack I remember was in 1993.  Migraines – the first one I remember, I was 11.  The pelvic pain – in my early 30’s,  in the mid 1990’s.  The hip pain – 2008. Bipolar – in my teens.
  4. The biggest adjustment I’ve had to make is:  These are a few major ones for me….  Losing my hearing.  Not being able to drive.  Not seeing my friends like I used to.  Realizing that I will never be cured.  Not being able to have a sex life without pain.  (but I’ve dealt with, or am dealing with all of these.  They will not keep me down.)
  5. Most people assume:  I can do much more than I can, after all, I don’t “look” sick.  And some assume I use my illness to get out of social situations, but honestly I hate being so solitary
  6. The hardest part about mornings are:  Never knowing what the day will bring.  I often wake up with a blinding headache, I know what that day will bring.  But if I wake up feeling decent I never know if I’ll continue to feel that way, or if I’ll be hit with a Meniere’s attack or Migraine.  However, I try to make the most out of every day.
  7. My favorite medical TV show is: Ummm, funny, I used to watch some medical TV shows, but I don’t any longer.  I think I see too much of the medical community in person.
  8. A gadget I couldn’t live without is:  I suppose I could “live” with out most gadgets, but there are some I wouldn’t want to!  My Cochlear Implant, I can hear so much more now. My laptop -so many of my friends are in there!
  9. The hardest part about nights are:  Trying to sleep, and trying to stay asleep.  Fear.  Fear of having an attack just as I’m falling asleep (this happens more than I’d like to admit), fear of waking up with a blinding headache……However, each night before I sleep I acknowledge my gratitude for the day, and plan what I’d like to do the next day.  I always have hope I will have a good day, and if I don’t I still know I’ll get something out of it.
  10. Each day I take __ pills & vitamins. (No comments, please)    18 daily (this included the total number, not different medications), 5 as needed, 4 vitamins daily, and one B12 shot a week.
  11. Regarding alternative treatments I:  have tried many, including chiropractic, acupuncture, certain vitamin routines….  I found medical massage helps my migraines and hip pain a lot.  I also use a special diet to treat gluten and fructose intolerance.
  12. If I had to choose between an invisible illness or visible I would choose: I don’t think anyone would choose to have an illness, but I’ll deal with the hand I’ve been dealt. 
  13. Regarding working and career:  I don’t work.  I don’t have a career.  Takes a lot out of conversations with others.  My doctor suggested I look into filing for disability, but I haven’t done it yet.
  14. People would be surprised to know:  I often don’t wash my hair for a month or more.  Water on my head is a trigger for me, especially if I have to close my eyes.  Luckily, my hair is pretty dry, and it’s long so I just tie it back.
  15. The hardest thing to accept about my new reality has been:  There are a lot of times I have to say” I can’t” or “no” to people…and to myself.  Losing most of my independence.  Not being able to drive.  And not being able to have a normal sex life.
  16. Something I never thought I could do with my illness that I did was:  Find the positive.  Become my own advocate.  Fire a doctor.
  17. The commercials about my illness:  The only one of my illnesses I’ve seen commercials for is Migraines.  Commercials are always drug companies wanting you to talk to your doctor about their drug.  I’m not comfortable with this, and normally the side effects they list are pretty scary.
  18. Something I really miss doing since I was diagnosed is:  I miss being able to go places alone.  (the answer to this question changes often, but right now, not being able to go anywhere alone is very difficult.)
  19. It was really hard to have to give up:  My hearing.  Even with technological help, I have a cochlear implant (CI) and a hearing aid, it is still very hard to hear at times.  I know my hearing with the CI will get better, but it has been very hard to loose all my hearing in one ear, and almost all of it in the other.  Without technology, I can’t hear anything.
  20. A new hobby I have taken up since my diagnosis is: Blogging. Reading a lot!  I’ve always liked to read, but now it’s almost an obsession.  (thank you to Kym for my Kindle!   Oh. another gadget I wouldn’t want to live without.)
  21. If I could have one day of feeling normal again I would:  I would be so very thankful!!  Then I’d spend a day pampering my husband, in and out of bed.  ; )
  22. My illness has taught me:  To be my own advocate.  To be more tolerant…I thought I was tolerant before, but I realize I needed a wake up call on that one.  That I’m not alone….this one relieves me because I needed to feel that someone understood, but it makes me so sad that others have to go through what I have.  And that I can handle much more than I ever thought I could.
  23. Want to know a secret? One thing people say that gets under my skin is: Any form of, telling me I’ll get better.  “When you get better….”,  “You will beat this….”   NO, I won’t.  This doesn’t go away.  I may be able to find something to make it more tolerable, but it will never go away.  And often treatments that work, stop working.   I also hate it when people say, “You don’t deserve this”  I know they are trying to be kind….but I never thought I deserved this!  And one more….”But you look so good.“
  24. But I love it when people:  Tell me how they are doing, want my opinion, want to talk to me as a friend…..Don’t get me wrong, I don’t mind if someone asks about my illness, if they are interested and want to know more about it.  But, sometimes I feel like people forget I’m anything more than my illness.
  25. My favorite motto, scripture, quote that gets me through tough times is: This may not be the life I expected, so I’m changing my expectations.   I don’t know if this is a quote or anything, it’s simply something I thought one day and it has helped me through accepting a lot of things that have had to change.
  26. When someone is diagnosed I’d like to tell them:  Often people who have been recently diagnosed find my blog and it scares them, so I start off telling people:  Everyone’s journey with Meniere’s is different.  Most do not get to the stage I’m at, so please don’t think you are going to lose your hearing….or any number of things I’ve been though.  I’m in the very rare group.  I let them know there are many treatments to keep Meniere’s under control, and point them to sites and other bloggers who can give a different perspective.  Most importantly, I assure them, they are not alone.  They can contact me any time, and there are online groups.
  27. Something that has surprised me about living with an illness is:  That my husband and I have gotten even closer.  Thank you to our therapist, I think having to go to a therapist about all of this surprised me too.  I was not handling losing my independence very well, and hubby wasn’t communicating very well.  But by going to a therapist we began to communicate out needs much easier, and recognize our needs.  Another big surprise is that people will reach out to me.  I’m very surprised that I’ve touched people, and made some honest friendships with people I’ve never met.
  28. The nicest thing someone did for me when I wasn’t feeling well was:  (This does not include things my husband does for me)  Come to visit me.  It doesn’t happen often, but I do enjoy other people’s company.  I hate that I often have to cancel when someone wants to do something with me.  I’m already so isolated, and if I have to cancel people often think I don’t want to see them, or I’m just too much trouble.  I don’t blame them, most of my friends have families, and they have to work their schedule around a lot of things.  So missing a visit makes it harder to make plans the next time.
  29. I’m involved with Invisible Illness Week because:   Because I have more than one. Some people I love and care about have invisible illnesses.  We need to let people know we are still people, but don’t judge us by how we look.
  30. The fact that you read this list makes me feel:  That you care, and maybe you understand some things about me you didn’t before.

It’s been a very rough week.

On By WendyIn Chronic Illness, Meniere's Disease10 Comments

It has been a very hard week.  I won’t go into details as it concerns people in my family, and I won’t talk about my family on my blog again.  I’ve been contemplating all week simply closing my blog and disappearing, or making it private.  But that’s stress talking, I’ve found so much support here and I want to think I’ve given a lot of support and information here too.  Plus I need a place to go and just get it out.  Even when I can’t talk about all of it.  Let’s just say, it’s settled for now….maybe.

Photo by Vincent Morrison – Manipulated by Wendy Holcombe
If photos could show feelings…

On the 15th, I got hit with a huge stessor!   I was under extreme stress and confusion for hours.  Finally, things were calming down.  I was relaxing in bed, tying to breathe in the ill feelings I felt towards me, and breathe out happiness and goodness to all.  I decided to have a little pineapple Greek yogurt, with a banana and nuts for desert.  It is delicious.  Well, what I got to eat of it.  Right when Stuart brought me my decadence, I had that Wonky feeling in my head…so I took my pills and hoped it was just a blip on the radar.  (Yes I know, how could I think of eating if I was feeling Wonky, but I’ve been having a lot of Wonky spells that just turn into nothing lately.) Unfortunately, before I was even finished with my treat the world was in full spin!  This was one of the longest attacks I’ve ever had….and one of the strangest.  It was Meniere’s, not vertigo caused by a migraine.  I went through all the stages…and all the grossness. (some how while throwing up I bashed my elbow on something, and it has had a knot on it since then.  It’s getting better, but I was afraid I had broken it the next day.)  Again, all the throwing up and losing all bodily functions.  Not being able to lift my head, except to put it in a bucket.  (I even threw up on our brand new carpet….not much, thank goodness, but Yuck!)

So the vertigo kept changing speeds, it would be wild, so fast I couldn’t recognize the things spinning by, then it would slow down to the point I thought it was going to stop any second….I even dozed off a few times, just to be jerked awake by vicious spinning again!  This went on for over 16 hours.  Luckily I didn’t throw up the whole time, I did keep heaving though.  Even before I threw up the first time, I would have the worst muscle spasms and just heave, like I had dry heaves, but nothing had started yet.  This often happens to me when I have an attack, at he beginning at least, I can’t figure out why.  Why does it have to hurt so bad??

Even after the spinning stopped for the next day I kept feeling like they would start back up, I couldn’t walk straight.  It was a very rough 2 days.

On Friday I had an appointment with my headache pain specialist (neurologist).  I was supposed to get Botox shots for my migraines.  Many people have had good results from this procedure.  I was a bit nervous, they do 31 shots in your head and neck/shoulder area.  Alas, I did not get it done.  Once again our insurance did not send a pre-approval, they didn’t deny it, but they didn’t approve it either.  Just like with the Cochlear Implant.  What a pain in the butt that was.  Luckily, they did pay for most of it.  They didn’t cover a procedure that cost about $500, testing the device after they hooked it up to me to make sure everything worked right.  Can you believe?  What if they hadn’t tested it, and later found out part of it wasn’t working?  I’d have to go through another surgery to replace it.  How bizarre.  Stuart called the insurance company on Monday, I have been approved for the procedure, it just seems no one knew it.  So now I have to get another appointment with this doctor…..hope it’s soon.

Sunday I had another scare. but not with vertigo.  Really I wasn’t scared, it’s happened before, and I’ve been checked out, still it’s uncomfortable and yeah, it’s a bit scary.  I had heart palpitations.  I figured out why, but it lasted a long time.  I wasn’t as careful Sunday about what I ate or drank.  I do not drink caffeine very often, and if I do, it’s just a little bit.  I also don’t eat much sugar.  Well…I wasn’t so bright on Sunday.  We were out and I had Mandarin Orange Green Tea, not thinking that Green Tea has caffeine.  That would have been fine, but later in the day we were at a store and I started feeling funny, and very thirsty, we couldn’t find anything that didn’t have either caffeine or sugar.  I decided to take the caffeine since I wasn’t sure if the sugared drinks had fructose.  I only drank about half of the soda.  After dinner I decided to have some ice cream we bought, it is Fat Free, and I was thinking Sugar Free too.  Not bright.  I only had about half a cup, but it was enough.  I started feeling strange.  I thought my blood sugar had dropped, so I ate some protein. But it didn’t work.  I was sitting on the couch watching TV with my hubby and I felt like my heart was going to beat out of my chest.  The doctor told me to massage one side of my neck, and it should help, she also said to put something cold on my wrist.  Well I did both, for a long time.  This lasted longer than I was comfortable with.  Finally, things slowed down….and all was alright.

I hate how much I have to watch everything I put in my mouth.  It would be difficult enough if that was all I had to deal with, but dealing with all my food issues and my other health issues is hard!  I’m dealing with it, and I’m lucky I can eat as much as I can…right?  I just need to be more diligent.

 

Well that’s all for this past week.

I promise my next post will be on a happier note.