ABC’s of Disability – “D”

On By WendyIn Meniere's Disease5 Comments

Todays post is Sponsored by the letter D.

I always have a difficult time picking just one word to focus on when doing these post.

So I’ve decided to not focus on just one word.  I like lots of words and I liked the post about B where we used a lot of different words.  Today, we’ll do that again.

The first natural word to think of is:

Disabled – Yes, we are disabled. But what does that word really mean to you?  Does it mean you can’t work?  that you are crippled? can’t do what you used to? are a different person?  (for me I had to admit I wasn’t as independent as I used to be – I was not able to do for myself everything that I needed.)

Dependent – We are more dependent on others and on things to help us do our necessities.   We are also more dependent on our wits, to figure out how to do more things a little differently so we can be a little more independent.  : )

Dare – We are daring individuals.  We have to do daring feats just to live day-to-day.  With my disease (and I know many of you have Meniere’s too)  we dare to just walk around some days.  We could have a drop attack at any moment…but we dare to live the life that was given us, and not worry about what may happen (most of the time, we try hard).  We dare to survive.

Denial – Sometimes the first part of having a disability is denial.  This can often make it much harder on the person who has the illness.  Especially, if it is progressive, if the person is in denial it can end up in disaster.  For me, I go back and forth with denial.  I want to believe I can do anything if I set my mind to it, I will get on my high horse and start to do this and that…and then I pay for it.  And unfortunately I usually hurt my husband at the same time, because he just wants to help and I push him away.  Denial can come in cycles.  I have to work on acceptance.

Different – So many people I know with a disability are afraid of being different.  That has never been a problem with me.  I think I’ve always been a little different, so this is just fine with me.  So I’m different.  People can accept that or not.  I think it’s harder for people to understand your disability if you try to act normal and you aren’t, then they think something is wrong and they just don’t know what.  I’d rather be up front.  “I’m hearing impaired.”, “I have bouts of vertigo.”  People may not understand, but they know something is wrong, and I’m not just rude and ignoring what they say, or drunk.

Daffy – Well you knew I had to put a funny in here, and no I don’t mean the duck.  You know we all feel a little Daffy some times.  We feel like we are going crazy.  We have all these weird symptoms.  We have doctors trying all sorts of things on us.  We think one thing is working…then it isn’t.  We don’t know who to believe.  And with Meniere’s feeling a little daffy (or crazy) sometimes is actually a symptom!  Don’t worry, you aren’t crazy. (Well, you may be, but I’m not the one to diagnose that.)  Just know that it is normal to feel that way sometimes.

Demon – Ever feel like you are possessed?  Like this isn’t your body any more?  Please, don’t tell me that I’m the only one that feels like my body has been taken over by some demon and it is attacking itself.  OK…maybe I shouldn’t have mentioned that one.

Dreams – With vestibular disorders it is not unusual for people to have very vivid dreams that wake them up many times during the night.  Do you have more dreams now than before?  Do you wake up more often?  Do you sometimes feel like your whole life is just a dream now and you really wish you would wake up?

Do – We are a bunch of people who do stuff.  We still do for other people,  we research our illness to find out as much as we can to help ourselves and others. You may feel like you aren’t doing much, if you actually look at what you do, I think you will be surprised at how much you get done.  And how much you do for others!  We do a lot, but remember, trying counts. So Just try to Do It!

Don’t – Don’t despair.  Don’t feel alone.  A disability is not a death sentence. Disabled people can be strong people who are DETERMINED to live a full and rich life, with our disability, not despite of it.

Please Don’t Judge Me

On By WendyIn Disability, Meniere's Disease6 Comments

This is something I read a long time ago that I have shared with friends and it seemed to help some understand this illness.  I don’t know who wrote it, I wish I did, I’d love to thank her or him.   (I recently found out…see comments, 9-5-2012….that Tina McDonald is the author of this essay….Thank you Tina for speaking for us!)

Please Don’t Judge Me

Author Unknown

Life with Meniere’s Disease : Before you judge me on one of my good days, you need to understand what one of my bad days is like.

Tinnitus – imagine having a headache caused by a fire alarm ringing or a bee buzzing in your ear continually for a long period of time. You can’t hear anything but that fire alarm or bee – It drowns everything else out.

Vertigo – Now imagine yourself as really drunk or with the flu at the same time as the fire alarm is going off. Now imagine that with these two things, you’d be dumb enough to get on one of the super roller coasters that does loop-de-loops or the amusement park rides that spin in two different directions at the same time. I’m not that dumb, but unfortunately I have no choice in feeling these sensations.

During one of these vertigo attacks that can last from several minutes to several hours if not days. I can’t keep food or water down, I can’t walk, and in order to get out of bed to go to the bathroom, I have to crawl like a baby on my hands and knees. The movement makes me so ill, if I’m able to crawl back to bed, I’m covered in sweat from exhaustion. Otherwise, I keep a pillow and a blanket at the bottom of a linen closet in the bathroom so that I can pass out lying across the bathroom floor. I end up sleeping for days after one of these attacks, only getting out of bed to go to the bathroom or to get something to drink, if I think I can keep it down. I have to call my family to see what day it is when I wake up. That is, if I can hear.

You see, this disease while playing havoc with your balance and equilibrium, also reeks havoc with your hearing. It wouldn’t be so bad if the hearing loss was constant and predictable. But no, one day I can hear conversation fairly OK, and the next I can be virtually deaf, then the next day I can hear again. The hearing loss can fluctuate, but is usually progressive, and many with the disease end up severely hard-of-hearing or deaf.

Even on a daily basis, your mind is so confused by the signals it’s getting from your ears that your balance sucks. You run into things constantly because you can’t balance well enough to avoid walking into things, or your mind is telling you the object is a couple of inches from where it really is. I don’t know whether to laugh or cry when someone teases me about being such a klutz. I could make the Keystone Cops look graceful.

I also have days that my coordination just doesn’t seem to be together. I’m carrying something, and all of a sudden I drop it because my brain seems confused as to whether my hand is really attached to my body. I sometimes miss a step and fall because of the feeling that my legs are not quite part of me and I have to focus on them to realize they are there. Apparently this happens because the part of your brain that recognizes parts of your body as belonging to you is the parietal brain lobe and it sits right above your ear, so if the nerves around your ear are inflamed, it can press on this part of the brain, or send the wrong signals to it (I’m not quite sure which), and you can lose coordination.

Ironically, the few high frequencies I don’t seem to have a hearing loss in can sound extremely loud, unbearably so. When a baby cries, an alarm goes off, or a microphone gives off feedback, I’d be willing to climb up a wall to get away if I thought I could make it. This symptom is called recruitment.

The disease also plays tricks on your vision. For some strange reason, the nerve that goes from your inner ear to your brain also controls some of your eye movement. Your eyes can twitch or bounce constantly, making focusing on objects, much less print, extremely difficult at times. Your eyes tend not to be able to “track” movement at the same speed, giving you double vision, and a bad headache.

You can get confused easily and your memory and concentration aren’t reliable. It’s what some people with the disease refer to as “brain fog”. Many of them originally were afraid that they may have a brain tumor or Alzheimer’s because it can sometimes gets so bad. Finally they find either a doctor whose very knowledgeable regarding the symptoms, or they happen to ask someone else with the disease, and find that this too is a symptom of this blasted disease.

Now try to imagine living with this disease never knowing when one of these periods of tinnitus, vertigo, hearing loss, double vision, lack of coordination, recruitment, disequilibrium, or “brain fog” is going to hit, or how bad it will be. At least with being drunk or riding an amusement park ride, you know what’s causing it, and you can make the choice not to do it again. With this disease, there’s very little warning if any for these attacks, you don’t know what’s causing it, and there’s no cure – only devices, surgeries, and some medications that can somewhat help alleviate the symptoms. And some of the surgeries are so radical, you think they came from a horror movie about a mad doctor. My ENT surgeon won’t even perform any more surgery on my left side, since I have the disease in both ears. He’s concerned about what would happen if my right side became worse than what my left side is now.

Understandably, anxiety and depression seem to go hand-in-hand with Meniere’s for many sufferers. We often ask how much worse can this disease get? For some strange reason, doctors aren’t very willing to give out worst case scenarios.

Now decide if you think I’d be able to do the same things you do on as punctual and regular schedule. For me, there’s no way. I’m being up front about my limitations. I try the best I can at living up to my full potential. Could you if you were in my shoes? They think now that Van Gogh suffered from this disease, and he cut off his own ear trying to escape it.

Yet on my not-so-bad days I may look like a totally healthy, able-bodied person. You ask me “why can’t you bend down – pick it up – lift it – drive – get a job – walk without a cane” It’s because I know these things can either bring on an attack – I couldn’t do them on a regular schedule because of the symptoms – or if I did do them, I could put myself and others in jeopardy if I should have an attack. You have to realize that with my friendship, love, dedication, and loyalty comes the fact that I can’t decide when I’m going to have a bad day, and the more stress I’m under, the more likely I will have a bad day.

So, please don’t judge me unless you’ve been in my shoes.”

(Of course, part of this is personal to this person’s situation, but it hits pretty darn close to mine.  I don’t walk with a cane, because I don’t feel like it helps.  I do find that a walker helps when I get dizzy.  It stays steady.  A cane just falls with me.  And of course, you all know that I do have some hope that things are going to get better because of fixing the CSF imbalance.  However,  It doesn’t look as if my right ear will regain it’s hearing and it looks like I will always have tinnitus in that ear too.  I’ll be very lucky if that’s the only symptoms that remain.)

I hope this little essay helps you in some way.  If you are a friend or family member of mine, perhaps it will help you understand me a little more.  If you are a fellow sufferer, perhaps it will help you in explaining things to others.

Recovering..a little slower this time.

On By WendyIn Meniere's Disease2 Comments

I was starting to get a little worried because I have been having some dizzy spells, and my hearing isn’t up to par.  Plus, I’m just really wiped out.

I knew Dr. Gray said to expect gradual improvements from these patches, instead of the instant improvement I had with the first patches, but I didn’t know how gradual.  Luckily, Dr. Gray called yesterday to check on me and she told Stuart it would take 7-10 days before I saw the same improvement I saw with the first patches.  (I thought it was kind of ironic that it may take 10 days before I see improvement this time, and last time I only had improvement for 10 days.)  I know it’s just coincidence , but I still thought it was kind of ironic.

So for now, still just resting.  Hardly any pain at all today, I feel like I’ve been getting over a pulled muscle.  Oh, and that cold I felt coming on…well, it doesn’t seem to be there any more.  I’ve been sniffling a little, and I’m very tired (but that could just be recovery, I think), that’s really it.

Yesterday I was so tired I got up around 10 or 10:30am, Stuart made me a lovely breakfast, and I was so tired that I laid down again by 12:30pm and didn’t wake up until 5pm!  I completely missed the only warm day we’ve had.

Stuart has been pampering me.  He’s been taking care of every meal.  Helping me with my every need, or want.  And we’ve been having the best time in the evening doing crossword puzzles.

Tonight, spaghetti and meatballs.  Yum.

Recovering and Our Magical Gnome

On By WendyIn Life, Meniere's Disease2 Comments

First I’m feeling pretty darn good today.  I’m not dizzy!  That is saying A LOT!  I have a ton of energy, unfortunately I can’t do anything with it.  I keep trying to do things and I go Ouch, Ouch, Ouch.  It’s not bad, but dang it all my back feels like someone beat it up.  And I guess they did.  : )   However, I’m not as sore as I was last night, so I’m healing fast.

No headaches.  That’s a good sign.  That means my pressure isn’t spiking.

The only thing I’m not happy about is that my hearing isn’t all that I want it to be.  (Yeah, I know, I expect miracles.)  I don’t expect my right ear to clear up, but the tinnitus in my right ear is being pretty relentless.  And my left ear isn’t as clear as it was yesterday.  It’s just a little dull.  I can hear OK.  But if I put my fingers up to my ear and rub them together I don’t hear that rustling noise.  I think my pressure is just leveling out.  It may be just a smidgen too high right now.  We’ll see.

But mostly, I’m doing great!

Now for Story number 2. Our Magical Gnome.

 

Mr. Gnome

We have a little Gnome that sits in the little garden section in front of our house.  Right now it’s just mulch, but during the Spring, Summer, and Fall it’s covered in herbs and flowers and such.  Mr. Gnome sits out there and watches over our little garden and takes care of things.  (like Gnomes are supposed to do.)

The strange thing about this Gnome is that he keeps moving.  I put him in one place, and I’ll go out and he’s in a different place in our little patch.  I’ve asked Stuart if he moved him, and he denies it.  He also looks at me like I’m a little crazy.  This latest time, we had a storm last week and Mr. Gnome was blown over.  I haven’t been feeling well enough to bend over and pick him up without getting dizzy.  Today, I went out side and there he is standing right in the middle of the little garden patch looking out over the yard, guarding us against … oh, you know the things that gnomes guard against.

(I’m thinking the little boy next door, who I just love to pieces, has been watching out over Mr. Gnome.  But I could be wrong.  It could be that I really do have a Magical Gnome and Mr. Gnome is watching out over all of us.)

Maybe I’ll have to take him in to see the upcoming movie Gnomeo and Juliet.  He’s such a good little gnome and everyone deserves a break every once in a while.  (but who knows what he’s really doing out there when I’m not looking…hummm.)

To answer your question, No, this is not the pain killers talking.  I’ve only taken one today.  I just think gnomes are kinda funny.  (maybe I haven ‘t taken enough pain killers??)

A New Patch

On By WendyIn Medical Tests, Meniere's Disease2 Comments

I went in to Duke today at 10:30am, early for my 11am appointment, and was taken straight back to see Dr. Gray.  (Dr. Linda Gray Leithe, neuroradiologist at Duke University Hospital.)

At about 3:30pm I was finally on my way home….it was a long day.

Tisseel

First, we went over everything and I signed all my consent forms.  After talking Dr. Gray was pretty sure we’d find out that my pressure was again low, that the blood patches didn’t hold, and that she would be patching me up again today, but this time she was going to be using Tisseel, a surgical fibrin sealant indicated for hemostasis and tissue sealing.  It looks like epoxy.  It comes in a double tube plunger and it mixes when they insert it.   (kinda cool huh?)

So I went through the same thing I went though when I got the blood patches, but I didn’t have to have another myelogram.  They just used the information from the first one.  I don’t have to be as careful after this procedure because this sealant doesn’t have to clot around the leak, it is sealed now.  However, since they put less stuff in I will feel the results more gradually instead of feeling it as quickly as I did last time.

I have noticed I can tell that I am hearing better.  (the TV was too loud! hahaha)  I’m less dizzy that I have been, but I don’t think I’d risk closing my eyes and shaking my head around yet…maybe tomorrow.  : )

Dr. Gray said I could walk around some tomorrow, but as sore as I am right now, I don’t know if much of that is going to be happening.  It’s not horrible, but dang my back hurts.  I hate taking pain pills, but I think I will be taking a couple tonight.

There is still a risk that my pressure may spike tonight, but I have meds to take care of that if it happens.  So far, no headache, so no sign of increased pressure.

When I left Dr. Gray shook my hand and told me that she hoped she wouldn’t need to see me again!  I must say, as much as I like her, I also hope I don’t have to see her again either.  She is such a great doctor.  You rarely meet a doctor who is so up beat and genuinely loves her job.  When you are with her you can’t help but catch the enthusiasm and hope that just flows off of her.

Here’s Sandy coming to check on my recovery:

 

Sandy checking on me.

Tonight my darling husband went and picked up a gluten-free pizza from Mellow Mushroom.  (what a treat!)  Now I’m going to relax on the couch and watch cartoons.  Maybe, we’ll turn on a movie, but right now cartoons are making me happy!

Right now I’m not feeling all that great.  I think the meds aren’t sitting well, and I didn’t sleep very well last night.  I sure hope I start feeling better soon.

I’ll let you know how I’m feeling tomorrow.

Thank you, everyone, for being so very sweet and sending me wonderful wishes.  I really do appreciate all your thoughts and prayers.

*fingers are crossed*

Puncture Tomorrow – Cold Today

On By WendyIn Medical Tests, Meniere's Disease6 Comments
A Zen Moment. (a commissioned painting by Wendy Holcombe)

Tomorrow I go in to see Dr. Gray again for another lumbar puncture and possibly having some spinal fluid leaks patched.  They called today and moved my appointment up one hour so my lumbar puncture is at 11am tomorrow instead of at noon.  I need to be there at 10:30am.  Yay, that means I will be able to eat sooner!

Today, I woke up with a cold.  It’s not bad yet, a slight sore throat, nose is running, don’t want to stay awake, head hurts, all brain foggy, achy all over…you know.  I’m a little worried about tomorrow though.  You have to be very still on the table when you get a lumbar puncture (after all, they are inserting a needle between 2 of your lumbar vertebra), what if I sneeze?  Don’t know why I’m worried about that, I’ve only sneezed twice today.

I’m glad I have the appointment tomorrow.  I’m really ready to see if we can’t get this figured out, but I am a bit nervous about having a cold.  Even if I don’t sneeze or have the need to move, I am not going to be comfortable on that table, after all the table is hard and I already ache all over.  However, I do want you all to know that a lumbar puncture is not like it used to be, they do not hurt.  The only pain I really feel is the pain killer they inject first and it’s just a little sting.  Then I feel a little pressure.  But it’s not scary, and it doesn’t hurt.  So no worries.  I’m just a little apprehensive because I don’t feel good.

I will have to find a “Zen Moment” to keep myself calm and still.  (actually, I just didn’t have a perfect picture for this post, so I thought I would shamelessly post one of my own paintings.  *smile*)

I may be a tiny bit worried about having a cold during the procedure, but really, I’m mostly excited to get this over with.  (I really hope they are planning on doing patches tomorrow and not just doing a lumbar puncture.  Truthfully, I just don’t know.)

Words on Wednesday Night

On By WendyIn Meniere's Disease5 Comments
I'm a Pet Bed.

I’ve found out that my pet’s believe I’m their very own pet bed.

As soon as I get comfortable, if I’m on the couch, or in the bed, it doesn’t matter.  If I curl up, Max (the huge cat with many toes), and Sandy (the lovable old dog) will soon be climbing on top of me to find a comfy bed of their own.  It’s really very sweet.  Until, I need to go to the bathroom in a hurry and I’m weighed down by about 40 pounds of animals!  : )

Something very odd happened yesterday.

I was in my husband’s office upstairs, I was standing beside his desk talking to him and had my hand on his desk to keep my balance.  I started to turn and my body decided it was just going to keep going backwards.  Stuart quickly reached out and grabbed me before I hit the floor, and I ended up in his lap.  (where I had intended to go in the first place.)  But for some reason I just busted out laughing. I thought this was just so funny.  The sensation of me falling backwards for no real reason, other than my screwy balance, just made me laugh and laugh.

Either I’m going crazy, or I’m taking things much lighter than I used to.   Of course, if I had hit the floor I probably wouldn’t have thought it was nearly as funny.

ABC’s of Disability – “C”

On By WendyIn Disability, Meniere's Disease5 Comments

The letter for this week is C.  I could think of a lot of words that I could use that begin with C that are important to people with disablities, but my husband said last week after we did the B’s that the letter C should be Creativity.  At first I dismissed it.  I thought he was just being funny because I’m an artist, or at least I try to be.  I seem to have lost a bit of my drive over the past year or so, but I’m trying hard to get it back!

Then I realized Creativity is the perfect word for the day.

When someone find them self disabled the most important thing they can do is get creative.

Depending on your disability we have to get creative about different things. but we all have to get creative.  Here are a few things I’ve gotten creative about since I found myself disabled with Meniere’s Disease:

  • I’ve tried to get creative about how to cook dinner.  Often I feel better in the mornings, so I’ve begun to cook many more meals in the slow cooker.  All I have to do is throw some things in the pot in the morning, and that evening, we have dinner.
  • Some days I’m too dizzy to walk around the house without help, so instead of calling my husband every time I need to move, I got a walker.  You may not call that creative.  But I think it is.  It has allowed me to become much more independent in my house.
  • I have sudden attacks of vertigo so I need to have my medication at a moments notice.  I found these little water proof vials we can keep on our key chains that keep plenty of pills in there for me.  Now we just keep our keys with us all the time.
  • I have an increased chance of falling, so we creatively covered the corners to the tables that I often walk by with towels.  (No they aren’t on our dining room table, I don’t walk that close to it.)  But the side tables in the living room, and my bedside table have a towel draped across the front.  You know it really doesn’t look that weird.
  • I get dizzy when I try to wash my hair.  Closing my eyes while I put my hair back under the water in the shower gets me dizzy.  So my husband valiantly offered to help.  We have a shower head that you can take off and move, so I don’t have to lean my head back much or close my eyes, he just moves the shower head around and wets and rinses my hair for me.
  • I love to take a bath.  But I also have a bad hip, so it’s very hard for me to just get up and out of the tub.  I used to call my husband for help and he would try to lift me and I would slip and it was just a mess.  Now, I found that I can simply roll over on my hands and knees and then lift myself up so much easier.  I usually have my husband in there to watch out for me just in case, but it’s so much easier, and I can do it myself!
  • My husband is very creative, or maybe just very organized, when I have a vertigo attack.  He has an assembly line of trash cans for me to throw up in so I won’t smell it, he has a number of wet wash cloths, he washes out the cans with mouth wash (again so I won’t smell it.) It may sound simple now, but he had to be creative to come up with this system.
  • Just like the system we have for when I start to feel bad.  What meds to I need, how fast, am I cold, am I hot….but it’s all a smooth system now because we were creative.  No one told us how to do all of this.
  • Every time I go to the doctor they ask for a list of my medications.  I have a spread sheet, every time it changes I print out a new one, and I keep it in my wallet.  I just take it out and give it to them.  My creation.  (I also have a medical ID bracelet and on the back it states that the list of my meds is in my wallet.)  This is important to know.  I created the design of my bracelet.
  • I also have a wheat allergy/Celiac disease.  I have to be creative with the foods that I eat.
  • I often can’t bend down to pick things up because I get dizzy, so I’ll pick things up with my toes.  (I know I really need to get one of those picker upper things that you can get, but so far, toes work).
  • I can’t bend down to scrub the floor of the shower, so I put the cleaner on a cloth and scrub with my foot.
  • Sex can be a challenge, not just with the dizziness but with the hip problems too.  (actually, that’s a big issue)  But we try to get creative.  As long as we keep trying in this area, I think that is the most important thing.  We have to make sure our relationship doesn’t deteriorate because it had to change so much.

Ok, that’s where I’ll leave you with the letter C.

Funny, it seems like I keep ending these talking about sex….hummm…an idea for a future post?  How do you keep the romance in your relationship now that you have a disability?

In what ways do you find yourself getting creative to help with your disability?

Things I’ve been thinking about.

On By WendyIn Disability, Life, Meniere's Disease9 Comments
The Thinker by Auguste Rodin (photo courtesy of Wiki Commons)

I’ve had many things that I’ve had to fight in my life.  I had a tumor that caused me to break my arm 5 times before they operated when I was 15, I was told I had fibromyalgia, chronic fatigue, IBS….I have a wheat allergy, probably celiac-disease, hypothyroidism, I’m bipolar, I’ve been raped, I’ve been divorced, I was in an abusive relationship…..Everything I’ve been though I came out fighting, and I persevered.

Then I got Meniere’s Disease.  At first it was really no big deal.  I would have an attack every once in a while. Sure I was a little off-balance, but I’ve been a klutz most of my life, and I had constant ear infections growing up, I was used to my ears bothering me.  My ENT gave me tubes, and that seemed to work, for a while.  (Dr. Kaylie thinks I was really just going through a good time again, and the treatment wasn’t really working.  I don’t know.  It seemed to work for a couple of years.)   Then starting the beginning of last year the Meniere’s went bilateral, and I haven’t been the same.  I went from an independent person to a person who has to depend on her husband for nearly everything a lot of the time.

There are 3 major things that make this disease so very hard for me to deal with.

  1. I’m afraid most of the time.  Not just of having an attack, now don’t get me wrong that scares me, a lot.  But I’m also afraid that every little happy thing I do, that it may be the last time I get to do it.  For example, I’m afraid I’ll never be able to drive again.  When I try to do something that makes me dizzy, I think, “I may never be able to do this again.”
  2. I feel like a burden.  I know my husband says I shouldn’t.  But I often do.  I can’t do a lot.  And so many of my friends have just dropped of the face of the earth, I have to feel like they just couldn’t handle it.  Their lives are too busy to handle having a disabled friend….it’s just hard.
  3. I often feel like I don’t have anything to fight.  (I have to depend on the doctors for everything.  I can’t do anything to try to fight for myself.)

But I’m realizing I’m wrong on most of those accounts.  I’m beginning to look at things differently.  In part because of some of you, because of my darling husband, and my pretty smart therapist.  (who I made cry this week….I really do need to stop making people cry.  I’m so happy that people care about me, but I hate making people cry.  You know I say that, and I mean it, but then in a small way, it warms my heart that someone cares that much about me.)

Better ways to think of things:

  1. I do need to have a little bit of healthy fear, so I will recognize when an attack is coming, so I can try to head if off.  But I need to treasure the things I do, if I don’t get to do them again, at least I will have these precious times.  I also need to remember, that we are working to get this Meniere’s under control, and I may be able to do many things again.
  2. My husband doesn’t feel like I’m a burden.  He is so grateful for that he can be here for me, and it bothers him that he can’t do more.  As for my friends.  As our lives change, sometimes we lose friends, and we gain other friends.  It doesn’t have to be because I’m disabled.  It could be for any number of reasons.  Perhaps, it’s just this time in our lives that our friendship isn’t working any long.
  3. My attitude about things can be a good fight in itself.  Working to find out as much as I can about my disease, and what can be done.  Simply taking my medication when I feel like an attack is coming on is fighting.  I need to realize that I am fighting, and I’m constantly finding new ways of fighting back.  I will not allow this disease to take away my hope, or my desire to fight.

There may be times that I forget this:

When this happens, I hope that you  (my friends) will kick me in the butt and point out what I have said here and get me back on the path I want to follow.

What I did today…and Spaghetti with Sausage

On By WendyIn Gluten-Free, Life, Meniere's Disease, Recipe8 Comments

Every Saturday we try to go to the Durham Farmer’s Market.  And every Saturday morning as we are getting ready, I say something and Stuart thinks I’m being mean to him.  We end up being snappy to one another, and it starts that way….I hate it.  Finally, I realized today that I get very anxious about getting up and going anywhere, and it’s not just when we are going to the Farmer’s Market it’s anywhere.  It’s just very noticeable on Saturdays because we do this every Saturday.

I was being a bitch.  I snap, and I’m snarky, and I am simply not the nicest of people.  But it really has nothing to do with Stuart.  First, I’ve gained so much weight, I find it hard for me to get ready and feel comfortable (read *pretty* here).  What woman does not get bitchy when she’s feeling like that?

Then I start to get more and more anxious about being out and about and what if something happens.  When we are home an attack is much easier to stop, or at least make it much easier.  But when we are out and about, it’s much harder.  What if I collapse?  What if we have to leave some place in a hurry?  There have been a few times we’ve had to leave a restaurant, just leave, the food hadn’t arrived, I was getting sick, and we had to leave NOW.  It’s so hard to explain, no we don’t have time for you to put the food in a to go box, here, we will pay you for it, but we have to leave now.  (besides I would not be able to stand smelling the food in the car all the way home.)  People look at you so funny, because all of a sudden I’m walking like I’m drunk and I can’t stand up by myself, and I wasn’t drunk a few minutes ago.  I can’t imagine what they must think after we leave.  We try to say, “She has vertigo, she’s getting very sick, very fast, we have to leave.  But how can they understand?

So now I understand.  I’m anxious about leaving the house, and it comes across as me being grumpy.  Maybe somewhere in the back of my mind I’m hoping he will get mad and say, “Well we just won’t go then.”  But instead he told me that I could go by myself.  Oh my, the terror that went through me.  But you know what?  I was going to do it.  Just because I got so mad that he said that to me.  And how dangerous would that have been?  Dumb, Dumb, Dumb.  (well, today, I’ve had a pretty good day, so I would probably have been fine, but still, it wouldn’t have been smart….what if…)

Deep Breath Here!  I calmed down and talked with Stuart.  I apologized.   He apologized.  And I realized what was really going on with me.  It was a very nice talk, and I hope we can deal with it better in the future now that we know what was (or may be) causing it.

So, off to the Farmer’s Market we went.  We got there, walked in, hit 3 vendors and said, “It is too dang cold out here!”  And we left.  We came away with a bag of Sun Chokes (also known as Jerusalem Artichokes), some green onions, a bag of mixed winter greens, and some baby turnips.  Not enough veggies for the week, but it was in the 20’s this morning and we all know I’m not a cold natured person…well, neither is my husband.  I’ve never tried Sun Chokes before, but I like trying new things.  I’ll let you know what I decide to do with them.

We then tried to go get breakfast but the breakfast places were way too busy, so we decided to have lunch at the steak house.  Yes, steak for breakfast.  It wasn’t what I wanted, but it wasn’t bad.

We left there and decided to drop by the mall to walk off some of that meal.  I was so bloated and miserable.  After our walk we came home and I realized my keys were missing. (I keep them attached to my purse with a carabiner type hook.) The hook was there, but the keys were gone.  I felt like such a fool.  Stuart called the mall, nope, no one had turned in any keys.  I knew I had them at the steak place because I opened the car door with them.  Stuart still called them, and yep, they were there.  How lucky was that.  Guess I’ll figure out a different way to carry my keys.  Perhaps a carabiner hook that screw locks, I’ll have to go look at them.  All I know is, I’m lucky today.

We also took a trip to the huge thrift store!  We bought a pretty blue bowl, 2 small sushi plates with small sauce bowls and 2 place mats.  All for $3.25!  How cool is that?  I decided I wanted some cuter dishes take pictures of my food for my cooking blog, so it doesn’t matter if I have a set that matches or anything.

We made Spaghetti Sauce tonight.  (see my pretty new bowl and place mat?)

Spaghetti Sauce with Al Fresco Roasted Garlic Chicken Sausage over Noodles

Spaghetti Sauce with Al Fresco Roasted Garlic Sausage

  • 1 medium to large onion chopped
  • 2 tablespoons olive oil
  • 3 teaspoons Italian Seasoning (I didn’t really measure, I just sprinkled it in there until it looked right.  I’ve been making this for a long time.)
  • 2-3 large cloves of garlic minced or chopped what ever is easier for you.  (about 2-3 teaspoons)
  • 1  28oz can Tomato Puree or chopped tomatoes
  • 1 package Al Fresco Roasted Garlic Chicken Sausage

heat olive oil in sauce pan over medium high heat.  Sautee onions until translucent.  Add Italian Seasoning stir for just a second(this will release the oils in the dried herbs.  Add garlic and tomato puree, heat thoroughly.

Cut up sausage in slices that look like round discs.  Brown sausage in a separate pan.  (I guess you could do it in the sauce pan before you add the onion, but I didn’t think about it.)  Add the sausage to the sauce, and heat thoroughly.  Simmer for as long as you want, the longer it simmers the more the flavors will meld together.

*hint, to quickly clean the pan you cooked the sausage in, immediately add water to the hot pan and scrape the brown bits off.  Then pour this out (the chicken sausage doesn’t have much oil, so there is no oil to pour out), add soap to the pan and swish with a cloth, and rinse.  Voila, it’s clean.  (If it doesn’t come clean just add a little baking soda and the last of the brown stuff should come out.)

Serve sauce over noodles of choice (we used Tinkyada Gluten-Free Noodles) with shaved Parmesan cheese on top if desired.

That was most of my Saturday.

Do you get anxious about going places?  Especially if you’ve been having a lot of attacks recently?  Do you find yourself not being so very nice sometimes, and not really knowing why?