#HAWMC 17 – Song of Silence

On November 17, 2016November 16, 2016 By WendyIn #HAWCM, Chronic IllnessLeave a comment

Today is Day 17 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge). The prompt today is:

Throwback Thursday!
Grab a post from your archives and repost it!
Add a few sentences at the beginning to frame it.
Why you chose it. Why you liked it. And why it should be shared again.

The post I want to share with you again came from another Health Activist Writers Challenge on April 11, 2012. The prompt was “Theme Song”, I was to imagine my health focus or blog is getting its own theme song. At the writing of this post I was losing my hearing, but I hadn’t lost it completely yet. I did not have a cochlear implant yet.

I wanted to repost this because often people have no idea what it means to have tinnitus. Please note that my tinnitus will not sound like anyone else’s tinnitus, everyone is different. Even my tinnitus is different on different days. It sounds much different now than it did at the time of this recording. I want people to know that just because I’m deaf it doesn’t mean I just hear silence when I take off my cochlear implants. Here is that post, I hope you enjoy it:

I happen to be losing my hearing due to Meniere’s Disease. So music is very hard for me. I can’t really hear it even with my hearing aid, it sounds very tinny. However, I have tinnitus all the time, so I hear noise all the time. At this time I’m deaf in one ear, and have fluctuating loss in the other ear, the other day I was having a particularly low hearing day. Deciding my hearing aid really wasn’t doing any good, I decided to just leave it out. That was the day, I read this prompt. I thought, I couldn’t have a song. Then I thought, even when I’m deaf, due to the tinnitus, I will hear sounds all the time. NO, they won’t be sounds I want to hear, but I will hear sounds.

I talked with a friend of mine, Vincent Morrison, who is a sound engineer. He agreed to help me record something similar to what I hear every day. Please know, my tinnitus changes A LOT. It varies constantly. But these sounds always seem to be around. We did put in some of the startling sounds that just come out of no where that scare me. We didn’t make it as loud as it can be. (I did want people to be able to listen to it.) I wanted to represent that my tinnitus can be softer, a medium tone, and I would say deafening…but that would be silly wouldn’t it?

So on a better hearing day, my dear friend came over and he tried his best. I must admit I’m not the best person at describing sounds. I am so touched to have this recording. Trying so long and so hard to explain just a little of what I hear has been so hard, now…this is my song.

“My Songs of Silence” – sound recording by Vincent Morrison

Artwork by Wendy Holcombe – “Fractured Ear”

If you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page. Don’t forget to Like Picnic With Ant’s Facebook Page too. 🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

The Crud

On March 6, 2016March 6, 2016 By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease27 Comments

sick cartoon

The chronically ill get sick, just like everyone else.

I have the crud. A sniffling, sneezing, aching, coughing, stuffy-head, fever, so I can’t rest cold, and unfortunately NyQuil doen’t help.

When you have Meniere’s disease you can get really sick when there is too much fluid in your head. I haven’t talked to anyone who has Meniere’s Disease who doesn’t have more symptoms when they have a stuffy head. No one knows what causes the symptoms of Meniere’s one main theory is that they result from increased pressure of an abnormally large amount of endolymph (fluid) in the inner ear. Doctor’s usually put us on a low sodium diet and often diuretics to reduce the fluid in our ears. When anyone has a cold they have a lot of fluid building up in their head; their nose gets all stuffy, and their ears can feel full: put that in a person with Meniere’s and you have one wonky person. Right now, I’m one of those people.

Nothing I can take can make all that fluid go away. Yes, I can take a few things to help “dry things up”. but I’m sure all of you have had a cold, and you know that no matter what you take you will feel a bit stuffy and all full in the head.

My symptoms are exacerbated.

My tinnitus is going crazy, as I’ve said to Stuart: “Really? You Can’t Hear That??” The noise will be so loud at times I could swear my body is vibrating with it. Other times, the pitch is so high I will suddenly buckle over from the pain.
The fullness in my ears feels like there is wet cotton in there and it just keeps absorbing more and more fluid, soon it will be dripping out my ears I’m sure. (this won’t happen unless I get a bad ear infection, it just feels like it.)
I feel much more dizzy and lightheaded than normal.
My hearing is just wrong. I have cochlear implants, I don’t hear like other people. “Cochlear implants (CI’s) bypass damaged portions of the ear and directly stimulate the auditory nerve. Signals generated by the implant are sent by way of the auditory nerve to the brain, which recognizes the signals as sound.” NIH Publication No. 11-4798 You wouldn’t think that I would have the same problems as other people with Meniere’s concerning hearing fluctuation and sound sensitivity, but I do. It is much worse when I have the cold, but it happens pretty much every evening, I’ll suddenly have my hearing so all funky; I can’t understand Stuart and often things sound so loud that I have to remove my CI’s. Thankfully, I can take them off and just hear nothing, except the tinnitus that doesn’t go way, but hearing nothing can cause other problems. When I take off my CI’s and stop hearing anything, I can get dizzier, and feel really confused. I don’t mean I’m confused because I can’t hear, I have severe brain fog. If I’m reading, I often can’t comprehend what I just read. I think this is because I notice the tinnitus so much more and it is bombarding my system. When I’m not sick, sometimes taking my CI’s off is often a pleasant sensation, to just relax in total quiet (as long as my tinnitus is being good and staying low). I do this every day when I meditate.
My oscillopcia is worse. (Oscillopsica is a visual disturbance in which objects in the visual field appear to oscillate. The severity of the effect may range from a mild blurring to rapid and periodic jumping.) It can be incapacitating, luckily mine just causes me to see things weird sometimes. I often see things as if there is this funky shadow surrounding them, like they are slightly vibrating but I can’t really see the vibration I can only see the after image after. It’s hard to explain. On a good day, I don’t have this, or barely have it. Today, I’ve had to stop writing this post many times because I am having a hard time focusing. (note, not everyone with Meniere’s has oscillopcia)
I think everyone has a headache when they have a cold, I don’t know if mine is worse than it used be before I got Meniere’s or not, that was a long time ago. I know it’s worse than my persistent daily headache. I’m at a 6 or 7 on the 0 – 10 scale all the time right now.

So far I haven’t had a full blown vertigo attack. I keep feeling like it’s coming, but it hasn’t. I’ve been having so many good days recently maybe this cold won’t set it off. I do constantly feel like I’m on a boat and a bit car sick, but the full rotational vertigo has not come around.

Having a cold and Meniere’s at the same time can be challenging.

If you have Meniere’s and you feel cruddy because you have the crud, you aren’t alone. Know that it gets better.

If you don’t have Meniere’s, now you know a bit about what people with Meniere’s go through when we have a cold. Some people have more symptoms than I listed, some people have less, but normally people with Meniere’s have their symptoms increase when they have a cold.

Today I have the crud….it just is.

A Few Facts About Vestibular Disorders….with comments about me.

On September 16, 2015September 17, 2015 By WendyIn Chronic Illness, Meniere's Disease, Vestibular Illness7 Comments

Top Ten Facts about Vestibular Disorders (This list is put out by VEDA. The comments in bold italics are by me, all about me.)

The vestibular system includes the parts of the inner ear and brain that process sensory information involved with balance. (however, your balance is controlled by your vestibular system, your vision and your sense of touch….but mostly your vestibular system.)
Over 35% of US adults aged 40 years and older (69 million Americans) have had a vestibular dysfunction at some point in their lives. (I remember my first vertigo attack when I was 30. However, I had balance issues long before that, most likely caused because I had severe ear infections in my teens.)
Vestibular disorders can be caused by disease, injury, poisoning by drugs or chemicals, autoimmune causes, traumatic brain injury, or aging. Many vestibular disorders occur from unexplained causes. (We don’t know what caused mine. *shrug*)
Symptoms of vestibular disorders include dizziness, vertigo (a spinning sensation), imbalance, tinnitus (ringing in the ears), fatigue, jumping vision, nausea/vomiting, hearing loss, anxiety, and cognitive difficulties. (I just want to say that tinnitus can be a LOT more than just “ringing” in the ears. I rarely hear ringing. I normally hear buzzing, banging, roaring…all kinds of noises, I know one woman who hears music….”ringing” is just an easy way to explain it. A lot of these symptoms are easy ways to explain them. Your vestibular system is kinda complicated.)
Vestibular disorders are difficult to diagnose. It is common for a patient to consult 4 or more physicians over a period several years before receiving an accurate diagnosis. (very sad but true. For a long time when I had vertigo attacks the doctors had no idea what was happening, I admit I probably didn’t describe it very well. I remember once I had to have IV fluids because I was so dehydrated, my doctor was convinced I had food poisoning. When I was finally diagnosed with Meniere’s disease it was a fluke. I had been to the ER because I had been throwing up for over 12 hours and the doctor there said I was having vertigo and needed to see an ENT, this was the first time I heard the word, “Meniere’s”. I was not diagnosed correctly. The doctor didn’t do any test on me. I could have had a brain tumor for all he knew. Years later after a battery of testing at Duke, it was determined that I do have Meniere’s, but I also have other vestibular disorders.)
There is no “cure” for most vestibular disorders. They may be treated with medication, physical therapy, lifestyle changes (e.g. diet, exercise), surgery, or positional maneuvers.
In most cases, patients must adapt to a host of life-altering limitations. (That’s a huge statement…there is NO CURE for MOST vestibular disorders. I personally have had at least some type of all of the treatments mentioned…of course they are being very broad in saying what kind of treatments they are, but I use medication, have had physical therapy, and probably will again, I have extreme lifestyle changes…you would not believe how my life has changed…. I’ve had surgery many times, and I’ve had positional maneuvers…..whew…I will probably have more treatments in the future… at least I hope so, I’d like to feel a bit better than I do now.)
Vestibular disorders impact patients and their families physically, mentally, and emotionally.
In addition to physical symptoms such as dizziness and vertigo, vestibular patients can experience poor concentration, memory, and mental fatigue. Many vestibular patients suffer from anxiety and depression due to fear of falling and the loss of their independence. (Most people do not understand how a vestibular disorder can cause so many cognitive issues, but it does. With Meniere’s I’m not just afraid to fall, I’m afraid of having a vertigo attack in public…. this is horrifying. I no longer fear the loss of my independence… I’ve lost it. I can’t drive, I can’t go out alone, I use a walker, I can’t cook (it’s too dangerous with a balance disorder), I have a very hard time picking things up off the floor, I can’t take a shower, or bath without someone near by, just in case (often someone has to help me…. I don’t talk about things like this most of the time, and I often push through a lot of things when I’m around other people, but I pay for it later.)
Common vestibular disorders include benign paroxysmal positional vertigo (BPPV), Ménière’s disease, labyrinthitis, vestibular neuritis, and vestibular migraine. (personally I have 3 of the vestibular disorders mentioned here. I have BPPV, Meniere’s Disease, and vestibular migraines. I also have an unknown vestibular disorder….one that is causing me a lot of problems but the symptoms do not fit in with the other defined disorders. I will hopefully be going to John Hopkins in the not too distant future to try to find out what this unknown vestibular disorder is and maybe how we can treat it.)
In the US, medical care for patients with chronic balance disorders exceeds $1 billion per year. (I have to admit, I always wonder where they get these numbers and what they include. I have to say the treatment of my vestibular disorders has been extreme. We are very lucky we have insurance. Of course, insurance doesn’t cover everything. To give an example of just how much one thing cost…. I had a vestibular illness take my hearing and cause me to get cochlear implants, they cost over $100,000 each. That’s a lot of money. Of course, most people with vestibular illnesses do not lose their hearing. I’m a bit rare. heh… but aren’t I always *wink*)
The Vestibular Disorders Association (VEDA) is the largest patient organization providing information, support, and advocacy for vestibular patients worldwide. (VEDA has been a go to place for me to find information. If you want to know more about a certain vestibular disorder, I suggest going to their website. http://www.vestibular.org)

Chonic Pain/Ilness Photography 2015 Project Week 3

On May 25, 2015 By WendyIn Chronic Illness, Photography6 Comments

This is the final week of the Chronic Pain and Illness Photography Project I have been participating in for the past 3 weeks. Facilitator Stephanie Blumensaat did a marvelous job putting this project together and keeping the group running smoothly. What a wonderful group of creative people who were willing to share so much of their art, their lives and their souls. Simply amazing. Stephanie has a blog, Chronic Pain Life, that you just might want to check out. She will be putting together future projects that some of you might want to participate in, I know I will.

I hope you enjoy these photos and insights into me….

Day 15 – Gratitude. – posting a day late

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I have much to be grateful for every day, yesterday was no exception, but it was a very rough day, things happening all around me that I could not help with or do anything about. (my dog had an emergency trip to the vet and I couldn’t move my head without vomiting to help…it was a very hard day.) Yesterday was filled with rapid vertigo. Yesterday I had a very long, rough day with vertigo. I am very grateful for the bucket I could throw up in if needed….and all the medication I had that made me not have to throw up so much. (I’m most thankful for my darling husband for taking care of our furry baby…she’s fine…and taking care of me.)
Truthfully, I’m very grateful the day is over.

Day 16 – Dreams

One dream I always had was to go to Disney Land, not Disney World, I wanted to go to the original.

Right before I got very sick, I was able to go. This is the land of dreams….a place where dreams come true…..the photo is the refection of the castle. I think this photo is very symbolic of my dreams today, they are very vivid and beautiful, a little wavy, and sometimes a bit upside down….that doesn’t mean I’ve stopped dreaming.
I still have many dreams, some are short term, some are long term, some are very attainable, some probably aren’t. And that’s OK. I think healthy people have the same kind of dreams….not all come true.

Day 17 – Identity

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The image I chose for this prompt is a mask I made….the outside shows how most of the world sees me….the invisible illness, my cheery exterior…is that part of my identity….yes, I think so. The inside of the mask shows how I feel about things and how I feel about me. I think this is a good representation of my identity.

This prompt was very hard for me. If I were able to really get up and out and create a new photograph for this prompt I would have done something different.

How do I Identify myself now? I’m still Wendy.

Day 18 – Know This

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Know This….You are not your illness/pain.

Your illness and pain are a part of you but it is not YOU.
Do not lose yourself.

Day 19 – Spirit

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Showing my spiritual side. I hope you enjoy this photo as much as I do.
I took the selfie yesterday and manipulated it in Photoshop to show my spiritual side.

I study Buddhism,
I follow a mindfulness way of living.
This has made a huge difference in my life, and how I deal with chronic illnesses.
Namaste

Day 20 – Goals

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Take more risk…..overcome fear….first step!….walk out the front door…..

My goals….get out more.
We moved to a new place in August of last year. During the move my hip started to hurt. I haven’t been able to hardly walk since the move. I had hip replacement surgery on the 14th. I’m starting to walk again, that is going very well. However, I’ve had vertigo attacks every day for over 30 days. Fear rules my life. I started to get in the shower today, and was then going to go to the store with my husband. A first outing since my surgery, other than to the doctor….

right before I got in the shower I was on the computer and the world started to tilt……suddenly it started to spin, violently…for 5 hours I was spinning with violent vertigo, so very, very sick!!!

Then I slept for 2 hours and I still feel like I have no balance and my head is mush.

Deep Breath!!!

This is a HUGE GOAL!
Get out that door!
Expand my life!
I know I can do it!

if not…my Goal is to be perfectly happy, in the life I have, just the way it is.

Day 21 – Invisible

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Invisible Illness and me

“You look so good!”
Just beneath the surface
no one can see
the cracks….
the cracks…..

Day 22 – Music (bonus prompt)

As most of you may know, I’m deaf. My chronic illness took my hearing. I haven’t been deaf long, and music is still in my head and I still sing and love music…I just can’t listen to it. (I have Cochlear Implants and can hear some music but not like I used to. Hopefully, I will be able to hear it better in the future, but for now, not so much.)

When I relax I often hum, when I’m up I often sing, my husband and I often make up silly songs and laugh…..the silly songs are wonderful, they make me feel normal, and keep up my spirits. Music can be very therapeutic.

Today I wanted to share something different with you.
A few years ago, right before I lost all of my hearing I sat down with a friend of mine who is a sound engineer and he did a pretty good recording of what my tinnitus sounds like. These are the sounds I hear all the time. I don’t hear the worst of it all the time, but I do hear some of these all the time.

One day recently I suddenly didn’t hear anything and it scared me. I felt completely alone and was terrified. It didn’t last long. These sounds can drive me crazy at times, but they can also be very soothing.

This is my music….my Sounds of Silence.

Day 23 – Art (bonus prompt)

I use my art to help me with my chronic illness in many ways.
Here you will see where I have three expressions of me.
Silly loving Me.
Chronic Pain Me.
Natural, Strong Me.

I try to create something every day….drawing, writing, photography……anything creative…..
My art helps me heal, even if I’m just doodling, creating heals my soul.

(sometimes when I can’t voice my pain, I can show it in my art)

The Chronic Pain and Illness Photography Project is over now. I’ll be returning to my regular scheduled programming. 🙂

I’m sure my regular readers are curious about my hip replacement surgery recovery. I’ll give you a thorough update in the next post….here’s a little spoiler….my hip is doing GREAT!

See you soon. I’m off to Duke for visits to my doctors tomorrow, and the next day, and the next day….. Yay!!

Not the post I planned….

On December 1, 2014 By WendyIn Chronic Illness, Meniere's Disease6 Comments

So I had this post all planned out. I had been working on it in my head. I even had a few little illustrations to go with it. Neat huh?

I really wanted to talk about what has been happening to me over the past few months. All the stuff that has been going on…Physically, Mentally, and Spiritually.

I thought I could get it out. I haven’t been able to write much. To read much. To do much of anything because of the vertigo. Finally, I thought I could do it. I started getting it together. but that’s not how things happened…..

I started getting ready for bed night before last. I had had a strange day. I hadn’t had vertigo, but my ears felt off. (if you have Meniere’s you can know what that means….or it could means something different for me….what they were doing, well, they felt very full, and my hearing was weird – best word I have – I thought that would stop when I lost my hearing and now hear through cochlear implants, but no, my hearing still gets wonky, unless of course I turn them off, then I just hear the increased tinnitus….oh yeah, I didn’t mention that, I also had increased tinnitus.) I also had this weird fainting type of spell. I didn’t faint, but I felt like I was going to, like I was hit by a tranquilizer gun. It was strange. I had to fight hard not to just pass out. I could have gone to sleep, I guess, but it was too scary of a feeling, like if I went to sleep I might now wake up. This has happened a few times lately, I have blamed the steroids, they can make your blood sugar drop, so I eat something and feel better. This time was a bit worse, as it came on very suddenly, and I was hard pressed to even move……so….Stuart checked my blood sugar. I’d just eaten a banana, my blood sugar should not have been low. My blood sugar was indeed not low. It was on the higher side of normal…hmmm. Not that strange since I just had that very ripe banana, but strange since I felt like I was fainting from low blood sugar??? what on earth? Well I ate some protein anyway, and maybe it was the placebo effect, maybe the spell was just ending, whatever…I started to feel better. But I still felt off…and I admit, I ate more, I ate too much probably. But I felt better.

A little while later I went to get ready for bed. I was brushing my teeth and looking in the mirror and thought…why am I moving? Then I feel it and think…”oh shit.” Yep, vertigo. No warning, no strange feeling, nothing….I was just moving….what the?

It was slow so I rushed to go to pee real fast but had to have Stuart help me to bed. (I always try to pee really fast before it gets bad because I always have to go when it happens. It is horrible lying there about to bust to pee and can’t move because of vertigo, but it happens every time! And if I vomit, I will pee too, complete loss of control. So rush to pee, if I can…..so strange how things have changed for me with this…I never would have considered trying to run to the bathroom when this started a just a year ago, now, well….things have changed….)

I got my meds in me and it looked like this wold be a short trip. WRONG! It was a long and bad. Over 4 hours….slow, fast, start to sleep – wake spinning fast, terrified – have to go to the bathroom again! can’t get up….bedpan, humiliation, back – pain! – ….FAST SPINNING – help….slow…..fast…..sick…sick….help….tired….guilt….sorry…..sleep….AHHH!…..slow….sleep…AHHH!……….

Now what?

I was supposed to be going down to 1 steroid a day the next day. Yesterday. I did. I felt bad all day yesterday. I hoped it was just that hangover feel from the night before. Then..Last night. vertigo. just a little, all night, I just kept waking with the bed moving. I handled it.

This morning I woke….AHHH! FULL FAST SPIN! Stuart’s at work, and I have to GO TO THE BATHROOM! and I do not mean just for my morning pee. Oh hell. Whoosh! Whoosh! Whoosh! I can’t move. Which world do I try to step in to? They are moving so fast. Whoosh! Whoosh! Whoosh! Oh I am so sick. More meds. sick. I have to GO!

I grab my phone….text….I can’t see the key board, it’s all a blur…WHOOSH! I type, “Spinning” I think…and hit send to Stuart. I don’t want to bother him, I want to be able to do this alone. But how? I know other people do. How do they do it? How do they go to the bathroom? How do they survive without killing themselves (accidentally or on purpose?) Since this has gotten so bad, I have always had Stuart to help me. I’ve only had to deal with an attack a very few times alone. That was so long ago. It was so hard. I don’t know how to not ask for that help from him. How do I do this alone?

Soon I got a text back. I don’t know what it said…..I texted….”help” hit send.

Then I called on voice. I only have to hit one button. I did not have my cochlear implant’s on, so I could not hear anything. I saw the little numbers start counting, I don’t know if he picked up, I just started talking. “I’m not hurt, I have to go to the bathroom. I need help for that. I’m not hurt. please just come help me to the bathroom. I’m not hurt. can’t get to the bathroom, really have to go…..” then said I hoped he heard me and hung up. I really wanted him to know I wasn’t lying there hurt, but I needed a little help….then I waited….

and waited. and held on as hard as I could. I knew I would soon have to try to crawl to the bathroom…..but then what? I wouldn’t be able to get up on the toilet…..what was I going to do? I kept trying to think. the bedpan was in the bathroom. Ugh! The trashcan? maybe. I’m going to kill my back even more. “I have to GO! I’m going to soil myself soon.” (I really think I may have ended up soiling myself before I would have made the decision what to do. My body wasn’t going to wait much longer.) Then Kiki jumped up and ran out of the room…..”Yes, Stuart is here. Whew….”

So I was saved the humiliation of soiling myself, or the possibility of injuring my back more from trying to get to the bathroom by myself…..or injuring myself any number of other ways. *sigh*

The vertigo won’t go away. It slows way down….right now I feel like I’m on a boat with the constant rocking, and if I move, it gets MUCH worse. I will have full blown spins on and off.

I had an appointment scheduled at Duke tomorrow with my ear doc to get his opinion about all of this, now I can’t ride in the car for that long. We rescheduled it for…I think Stuart said a week or so out. I have increased the steroids and am hoping I can get this under control enough by then so I can ride in the car to get there. What can he do? I have no idea. What is causing this? I have no idea. I thought I had an idea, but now, nope. Where do I go from here? if my trip to Duke comes up with nothing….I don’t know. One step at a time.

I can’t control what happens in the future, but that doesn’t mean I can just sit around and not do anything. I have to consider Stuart’s job. His boss has been so very understanding, but this is above and beyond what we ever thought he would have to be doing. First I injure my back and now this? I’m afraid he is being understanding on the outside and not so much on the inside? Stuart is getting his work done. He works the hours, just often not normal hours. Today he is now working at home. He is going to talk to his boss again about this to ease my mind. He likes this job, I do not want to jeopardize it because of me. But I do not know how to take care of me during the attacks by myself. If they are short, fine. But when I can’t walk all day long because of it? How do I go to the bathroom? Get water? food? We can’t afford to get me a helper, and who would know when I’d need one? (I’m spouting off out loud here, I’m not looking for answers…..just where my mind is right now.)

The guilt about this eats me up. It is crazy to feel so guilty about being sick. I didn’t do it. I have no control over it. Yet, this is the one thing I find the hardest to deal with….guilt. I am so very sorry to be such a burden. At times I will feel like I am past this, but then things like this happen and how can I not feel like a burden. How can I not feel guilty? How can I not feel that I am causing so much trouble for my husband? Believe me I could give a list here of a lot of things that need to be done, that he needs for himself…..ect…..that are neglected because of me….because I’m sick. Guilt much?? I’m working on being much more gentle with myself, non judgmental….I’m better than I used to be, but really, I don’t know if I’ll ever get rid of all of the guilt. It’s a work in progress. I can say it is much better than it used to be. I don’t hate myself, and I don’t think of myself as a complete failure. Those used to be huge thoughts that ran through my mind. Those are thoughts that I hear from many people who are chronically ill and have lost so much of their independence. That’s a sad thing isn’t it? Ah…things I’ve been thinking about…..I’m doing really well with much of this stuff. I really do like me. I try my best to be a good person and I think that’s pretty darn important. It’s just that my body often needs help, and I feel guilty about that. Perhaps, if my husband had help it would be easier. …..eh…..going in circles there aren’t I?

No…this isn’t the post I planned to write. It isn’t well thought out. It isn’t illustrated. It doesn’t give a good account of what has happened. It’s just me. Telling you a little bit how it is now. In this world of mine. would I change things in my world today. yeah, can’t say I wouldn’t. Do I still love my life….most of it yeah. This vertigo stuff can hit the highway though…..but I will accept it. I have to.

This is just how things are right now. Just right now. they were different a moment ago…they will be different in a moment.

I’m actually much calmer about things and I’m dealing mentally with things better….yeah I know it doesn’t sound like it….but really I am (probably won’t be when the steroids start kicking in full force again, but hey, at least I’ll know it is the steroids, right? this last round made me a bit crazy….I do not know what if feels like for a “normal” person to be on a high dose of steroids, but it makes me feel like my bipolar medications aren’t working, however, you sit there and think….is it the steroids or do I really feel like this? ugh!)

It has taken me all day to write this.

I hope it makes some sense.

I’m going to try to write more often. I need to keep up with what is happening to me. So these posts coming up may be up and down or start to sound the same or something….but I really need to just write about what I am going through….

hope you don’t mind….

I might just need someone to listen.

What is wrong with me??

On November 15, 2014 By WendyIn Bipolar, Chronic Illness, Meniere's Disease9 Comments

What is wrong with me? This is the question I kept asking over the past couple of weeks. Heck I’ve been asking this question a lot over the past couple of months, I just keep seem to be falling apart. But I don’t think that way….or I try not to. I accept things as they come. I just roll with the punches. Yeah. Well that isn’t how it has been going. I’ve been trying. But I’m not succeeding right now.

It has just been too much. This post is about the latest….

I mentioned a little in the beginning of my last post: VERTIGO…MAJOR!

It started the beginning of this month. I would just suddenly have this whoosh feeling and I’d start to spin. It just felt different. I can’t explain it. Maybe it was different because I had been feeling so off for so long. I had been having the severe disequilibrium for so long (feeling like I’m on a boat all the time) and not being able to focus on one spot without it moving. Maybe? Really, who knows. But these attacks…they are different. The start, it just feels like I moved my head too fast, but I didn’t move…and suddenly I’m in full spin.

One night I had a drop attack, but it felt different from any I’ve had before, and I haven’t had one in a long time. We were watching Jeopardy, and suddenly I felt like an entity had just come up and partially entered my body and pushed me over on the couch and I gasped…one of those screams where you suck in all your breath…I just fell over on the couch and was in full-blown vertigo. If I had been standing, I would have hit the floor hard! It scared me so much. Not just the falling, but that feeling before hand, I literally felt like there was something trying to enter my body and pushed me over. It scares me just thinking about it.

When it started I had just had a day completely vertigo free. I could focus on a spot without it moving, the boat stopped. Relief.

What happened for that day? What happened after that day? These are questions my mind likes to ask but no one can answer, I try hard to stop the loop of questions, but it’s hard. I’m an inquisitive person. I’ve always been that way, I want to know how things work, I loved science and proving theories. Telling me that no one knows something about a scientific problem is hard for me. I keep thinking I’ve accepted that. And I have. I have. But I don’t want to. I want it to change. I want to know what is happening to me. What changed? And more than that, I want for people to stop asking me that question. It is hard enough for me to not have the answer for myself, but when someone else ask it, it cuts me to the bone. I want to just scream….I DON’T KNOW! Please NEVER say to a chronically ill person, “Why can’t they do anything?” of “I think you need to find a new doctor.” You have no idea how many doctors I have been to and still continue to consider. However, this is my life. It is my decision how I get treated. You do not know what it is like to live with this, and you have no idea what the treatments are….do not tell me what I should do. (unless of course you have this disease then you can talk to me and if you over step your bounds I will feel I can tell you to so. That’s different, we are going through the same crap…excuse my colorful language.) However, normal people do not understand. Heck, some people who have this don’t understand, it’s different for different people.

So….off that soap box and pity party….

I went to the doctor on Wednesday. Yes the doctor here in Charlotte. He really doesn’t listen. I will not go back to see him. I am glad I will be able to see the audiologist here when I can’t get to Duke, but I will have to find a different doctor. (and I don’t feel right going to the audiologist since they don’t get paid, I’ll only go there if I absolutely have to.) They do have a lot of doctor’s in that practice, however he is supposed to be the “head guy” who knows about Meniere’s. I will be doing some research, but if he is the head guy…I am up a creek. Let me tell you about my latest visit.

I did get an appointment rather quickly, that was nice. We got to the office and I had to be taken in by wheelchair. They thought I was in a wheelchair because I had back surgery?? I never said I was having back surgery. I did tell them I had a herniated disc and was having physical therapy, therefore I wouldn’t be able to do vestibular therapy until I got that straight. (Where did this information come from?) He asked me about these attacks, how long they have been happening and what they were like. I told him …bad attacks lasting 30 mins to over 3 hours, 3 to 6+ times a day, coming on with no warning. He asked me to describe the attacks. I looked at him and said. “You know what a Meniere’s attack is like.” Yes, I was a bit snarky. I had been through telling him what my attacks were like the last time I was there. I have never had to tell my last doctor what my attacks are like every time I go in there. He said “Yes, but I want to know what your attacks are like.” I started to tell him, I told you last time, but I didn’t. I said, “severe rotational vertigo, severe tinnitus, want to die!” “Yes, that’s normal” DUH! Stuart them tells him how much my eyes have been vibrating with these attacks. I got him to really look this time, and he really noticed, he as surprised he hadn’t seen it so much before. My eyes really dilate, and I have nystagmus really bad during an attack. I need light or I get really sick, but lights also hurt because my eyes are so dilated. My eyes hurt so much after just a few minutes, after hours…well dang! So the lights are normally dim and my face is in a bucket throwing up, of course my darling husband doesn’t normally see my eyes vibrating. Poor thing felt guilty he hadn’t really noticed as much before. I was having him look because something with Meniere’s one eye will vibrate more than the other telling you which ear is causing the attack…not all the time, and not this time…darn.

Back to the visit. The doctor then looked in my ears and does this thing where he makes me follow his finger with my eyes….he moves his finger really fast. I tell him…that makes me sick. He keeps telling me to look at it. I look but I will not look fast. I am not going to throw myself into a spin in his office just to perform his little test. (I know it is neurological test, I’ve had it many times before, you do not have to do it so fast) I had already taken 3 or 4 Valium that day because of the attacks I’d already had. I can tell he gets frustrated with me when I don’t do the test as he wants. oh well. He asked what I take for my attacks, I told him, Valium and Phenergan. He said, well that’s the best. He asked if I had this happen before. Yes, in the spring of this year, and explained it had been after I had been on a high dose of steroids for my migraines that tapered off too fast. My ear doc had to put me on steroids that tapered off slower. He said, I told me I only have attacks 2-3 times a year. I said, I only have very severe attacks 2-3 times a year, I have small, and mini attacks almost every day. He said nothing. He paid NO attention to that. He acts like since I don’t have severe attacks like I have had the past couple of weeks all the time then this is not debilitating. He really heard nothing I said about how this is affecting my life. He heard nothing about how I can’t focus on things without them moving. He DOES NOT LISTEN TO ME! Why? Later when I got home I was so upset, I talked to Stuart and was in tears, “Did I down play my Meniere’s to him the first time I saw him? He doesn’t understand what this is doing to me.” Stuart then told me…that no, he just doesn’t listen, he only hears what he wants to….I digress again…back to the visit….

So he wrote me a prescription for steroids. Good, that is what I expected. He told me the dose and I thought…That’s High. He then said some people get very agitated and have mood swings on these….I told him I do, and it can be pretty severe on a high dose. He ignored me…”If you have a problem call me” I just told you I have a problem! Listen to me! I explained again about how the high dose prescription from my migraine doctor that tapered off too fast made me spin. He said, “This won’t make you spin, but if you have a problem, call me.” Hmmm, are you listening to me?

I got the prescription and started it. The next day I couldn’t stop crying. I looked that the dosage….and the tapering. 60mg a day for 14 days! then 40mg for 2 day, 30mg for 2 day, 20 for 2 days, ….you get the idea. 14 days then 2 days each…that’s a pretty fast ramp down! and 60mg of prednisone for 2 weeks!! I will be going out of my mind! It is very hard for me to deal with these emotional swings with my bipolar swings anyway. It makes me feel like I am having bipolar episode, and it drives me crazy. I can’t trust my own emotions. I don’t know if all of my mood swings are from the steroids or if I need to be evaluated for bipolar stuff. So, I thought….I can’t do this. I decided to look up my chart on the Duke Patient Portal and see what my prescription was from my doctor there. It was for prednisone, 10mg tablets, so that was all good, but the dosage was much different. I’m following his dosage. He starts out at 40mg for 5 days, then goes to 30 for 5 days….ect. a much slower taper down, and I know I did fine with it. I will also be taking half as many pills.

Is this the right thing to do? Should I be treating myself? In this case….I don’t really think I’m treating myself. I don’t like to go against a doctor’s prescription, especially about steroids they can mess you up! But I know my tolerance to them and I know they do mess me up. I once swore I would never take them again….but sometimes you have to do something that you don’t want to do to survive. I feel like since I couldn’t go to Duke to see my doctor, I’m doing the next best thing. We did call him and he said he felt steroids would help again, but didn’t feel he could prescribe them without seeing me. (My point…as I say in my disclaimer, I am not giving medical advise. I do not advise anyone to ignore what their doctor tells them. This is just my story.)

Good news. The steroids are helping. I’m on day 3 now. The first day I had a mini attack and a few hours feeling like I was VERY drunk, I was more sick to my stomach than I was during most of my attacks, and that is saying a lot! Unfortunately, I had run out of what I had been using to really control my nausea, so I was really sick that night. Yesterday, I didn’t have an attack. I did have that drunk feeling again last night right when I was getting tired, same as the night before, thankfully it didn’t get as bad or last as long. So it looks like things are getting better day by day. Tonight, I am going to force myself to go to bed and to sleep as soon as I feel tired…maybe that will stop that drunk feeling.

that is the story of my last couple of weeks.

It has been hard.

The last few months have been hard. Physically and Mentally. It has also been hard because the doctors I trust are 300 miles away. I’d also like to see my therapist, this has been a lot to process, and I’d like to have her to help me through this with the mood swings. I moved here feeling so much better, with so much hope, so much promise. I thought I was ready to handle anything life through at me. I was wrong. I’m still trying hard to live in the now. I’m trying to accept things as they are, and accept my feelings … nonjudgmentally. that is a BIG thing. I may be having a really rough time, and I may not be able to accept life as it is without wishing it to be different, but that’s alright. I’m just not there yet. Right now I’m hurting, and I need to be here for a little while, and stop judging that. I’m still hopeful and good and happy and loving….it is just that the hurt is in front of it right now. And I’m not going to judge that. I’m just going to wait until it goes away, and since I accept that is here, and a part of me, the faster it is lifting and the other parts of me are shining through.

Deep Breath.

You can’t help me hear better why??

On October 28, 2014 By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease35 Comments

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

I could not believe what I had just heard!

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

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

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

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

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

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

I am at a loss.

There is no other CI clinic in this city.

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

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

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

I am working hard not to let it.

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

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

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

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

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

*sigh*

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

I can’t email them!

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

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

OK….

I’ve vented enough.

That’s my predicament
on which I will lament.

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

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

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

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

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

On October 22, 2014 By WendyIn Chronic Illness12 Comments

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

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

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

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

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

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

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

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

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

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

So where am I now?

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

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

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

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

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

am I giving up?

What do you think???

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

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

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

things change….

On September 22, 2014 By WendyIn Chronic Illness, Mindfulness13 Comments

Everything Changes - photography by w. holcombe — Everything Changes –
photography by w. holcombe

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

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

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

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

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

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

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

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

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

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

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

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

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

Moving Day…kinda sorta

On July 17, 2014 By WendyIn Chronic Illness6 Comments

I wish I had been writing short little post all along, because now I really have no idea where to begin.

This has been so very, very, very hard. Yet in many ways it has been so very liberating. Liberating because I feel I am being unburdened by so many things that I do not need. How did I get so much stuff? When I met my husband I lived in a studio apartment. Where did it all come from? And truthfully, for just me, I had too much stuff then! Getting rid of all of this clutter is freeing. I keep thinking, for the past few years I have lived without even thinking about this stuff why do I need to have it around me now? There are some sentimental things I’m having a hard time parting with, and I’m holding on to some of those. I think I’ll have a second ‘cleansing’ later.

Then there have been so many other very hard parts.

Physically. Physically, I just couldn’t do as much as I wanted. As much as I felt I needed to do. I got so sick. All the dust and stress, and just everything caused me to have major symptoms. My breathing. I had the hardest time breathing on many days. Twice while I was sorting through things I realized I was confused, once I was giddy, I got up and couldn’t walk straight. I got out of the room and each time Stuart saw me and helped me to the couch. Then I started coughing. I’d cough up a lot of mucus and need my inhaler and a nebulizer treatment. I was not getting enough oxygen. I wasn’t wheezing yet, so I didn’t even realize it, but my lungs were filling up with mucus. This whole situation, has really opened my eyes as to just how little I understand about my lung issues. I’ve had to cancel many appointments with my lung doctor because of vertigo, and now my doctor is finishing her residency with Duke so I would be seeing a new doctor, so I’m going to start looking for a new doctor in Charlotte as soon as hubby’s new insurance kicks in. I’ll post more on that when I see the new doctor, I don’t want to say more about it until I get more information. For now I’ll say, I’m keeping a closer eye on how I’m feeling, how I’m breathing, and how it’s all going together.

The breathing difficulties made it very hard for me to help as much as I felt I needed to. Yes, I do mean needed to, because no one else could say if my stuff was to go to the new place or not. And we did not have the luxury of just packing it all and deciding what to keep later. We are moving from a 2300 sq ft home to a 700 sq ft home. Things had to be trimmed! So I tried wearing a mask, it worked somewhat, but it made me less air flow, this made me feel like I couldn’t breathe….maybe I’m a bit claustrophobic? Maybe a little, but I wear that mask out all the time with no problem, but I’m not exerting myself. I guess that’s what was making it difficult, or perhaps I was just already so irritated.

Then the headaches were getting bad. Maybe because of the breathing issues, maybe because of the stress, maybe because of all of the above….or the weather, or ……my head was / is hurting.

I was having more vertigo.

The last 5 days at the house I spent most of 4 of them in bed. Talk about GUILT! However, I got a lot done from the bed. Stuart would bring me things to go through in bed. Not sure that really helped me much physically, but mentally it helped.

I have not been doing well with my Mindfulness Based Stress Reduction studies. I think if I had been doing them longer I would have been able to deal with this better, but nope, I didn’t deal well. Kind of went right out of my brain. I’d try every now and then….and then I’d just look around at my completely torn up house and think….how on earth are we going to do this? and FREAK OUT!

Well, things got done, as much as they could.

Movers came today…..Oh that’s a story. The relocation movers. Couldn’t come until today, the 17th. Are giving us a FOUR DAY WINDOW to deliver. That means delivery could happen on the 21st! That’s the day Stuart was supposed to start work! Ummm…..this is the relocation company that Stuart’s company uses. So, luckily his boss is very understanding and he is going to start work on the 28th. Phew!

Can I just say, moving under the best of circumstances is not easy.

Downsizing like we are makes it more difficult…..even if you want to do it.

Having very little to no help makes it extremely difficult!

Having a chronic illness on top of all of that can make it pure hell.

My saving grace, as always, having a spouse who is willing to go that extra mile to make it as comfortable for me as possible.

That’s why, today is moving day….and I’m sitting in a hotel room with Max the many toed cat. We didn’t need a freaked out cat there while the movers were doing their thing, and I didn’t need to be there with more breathing irritants and getting more stressed. (ahhh…deeeeeep breath!!!!)

I’ve been a bit scared that this whole thing is going to make me go back a bit….meaning, I’m going to end up back having daily migraines, tinnitus, pain, vertigo… Not being able to do much at all. I have been doing so much better. suddenly, I have been really scared…..

Then I thought. That’s tomorrow. I have no control over tomorrow. My worry isn’t going to change it. I can only continue to do what I know to do, and if I feel good, great, if I don’t, I’ll reevaluate. I’ll just live in the moment. That’s all I have. And right now, this moment is pretty good.

Hubby should be here soon. Max is dreaming kitty dreams. I see kudzu taking over the fence outside my window. It’s a normal day in “The South”.

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