Silly Saturday

I’m having a problem with Anger Issues lately.

I realize that it stems from the situation I’m in right now.  But, that doesn’t help much.

I hate feeling angry.

So I decided to be very silly!

Purple nails with bright green polka dots!

One good thing about not being able to do anything for…has it been over a month now?  Dang!  Oh, back to the good thing,  my finger nails look great!  I mentioned this to a friend of mine, and he suggested purple polish….a few days later, I added Polka Dots!

Now, you know it makes you smile to think that a 48 year old woman has Purple Finger Nails, with Bright Green Polka Dots!

**Note – my husband said that it didn’t surprise him at all.  Just as the orange hair didn’t surprise him.  “It’s just you!”  He also warned that if we ever are able to foster, that our child will think he or she has a really strange mom.  I disagree, I think they will think I’m a really cool mom!  (yeah, right…how many kids really think their parents are cool?)


Artist’s Date Week 3 – let’s play with Photoshop!

I’m not sure how much The Artist’s Way workshop is helping my creativity.  I find that most of the time in my “morning pages”, I write about being chronically ill.  Perhaps that is what is causing my creative block, what is standing in my way?

However, I do like the fact that I have to take at least 1 hour each week as an artist’s date.  I haven’t been able to do some of the things I wanted to do for these dates, like go to the museum, to on a gallery walk…things like that.  I’ve had to improvise, and that’s a good thing.  It’s teaching me that I can create, something, even when I’m flat on my back.

One of my 101 things to do in 1001 days, is to learn Photoshop.  So today, I created something using Photoshop on my artist’s date.



The flowers in this are photos I took of flowers in my garden.  Now I’ve learned to cut out subjects from photos and paste it in another image, and I played around with the filters, and text.  I’m learning!  And I had fun!I’m feeling much better about things.  Don’t know why…just kicked myself in the butt, and said enough!

Still having the disabling headaches, and I had no idea that tinnitus could be this loud!!  I think I will go insane if I have to hear this all the time.   Oh, wait!  What’s that you say?  Too late.  Yeah, I know.   Did I mention that the sounds in my head are not voices?  Well, not lately anyway.  Ha!

Yes, I’m in a strange mood.  You have industrial machinery running inside your head for days and see if you don’t get a bit punchy!  Today for about 2-3 hours I had the machines in my left ear, and a high-pitched squeal in my right…What the???  (I’m trying to stop swearing.  Probably not the right time for that, but I’m giving it the old college try.)  What does that mean anyway?  “The old college try”?  Hum.

Well, I sat up for about 30-45 minutes to eat dinner, and now I’m getting a headache.  Sounds like I still have low pressure.  ??? Maybe???  Oh, who the….oh wait, I’m not swearing….um….who in the world knows?  (better?)

happy thoughts!


The Challenges of Summer.

Phineas and Ferb courtesy of The Disney Channel

As Phineas and Ferb say:

There’s 104 days of summer vacation
And school comes along just to end it
So the annual problem for our generation
Is finding a good way to spend it…

Yes, it has been a long time since I’ve been in school and had a “summer vacation”, but I have always loved summer.  For as long as I can remember I’ve always felt better in the summer.  I hurt less, and I just want to get out and do more.  Longer Days and Warmer Nights…life is good.

The challenges of Summer?

  1. I over do it because I feel better, then I pay for it!
  2. I get over heated easily and don’t realize it because I love hot weather.  (although we lived in Palm Springs, CA for a while…it was too hot there!)
  3. I over extend myself.  I have a hard time saying “No”, I seem to think I can do anything during this time of year.
  4. I often end up eating things I shouldn’t, and get sick.  (I just don’t plan well.)
  5. Again, I get too hot before I realize it!
How I can over come these challenges?
  1. Well, this should be easy, just do less!  However, it’s often hard to tell when I might be over doing it.  I guess my best option here is to pay more attention to what my body is telling me.  And REST OFTEN.
  2. Limit the amount time I spend in the heat.  Don’t just trust that I can tell when I get too hot, or thirsty.  Set a time limit, and stick to it.  And DRINK A LOT of water!
  3. I need to remember, I can only do so much!  And sometimes, I can’t do anything.  I feel guilty when I tell people I will be somewhere and then I can’t show up.  I need to tell more people either, “No.”  Or “Maybe.”  If people don’t understand, then do I really want to be doing anything with them?
  4. Since I have gluten and fructose intolerance, there are a lot of things I can’t eat.  Too often I go out and don’t realize we may not be home when I get hungry.  I must plan better for this.  Make sure there will be food I can eat at parties.  The easiest way to do this is to bring something.  When we are going out and about I need to make sure we will be near places I can eat, or keep food with me.  I used to carry protein bars in my purse that were gluten free so I’d always have something.  Now, it’s more difficult.  I haven’t found a protein bar that doesn’t have things I can’t have because of the fructose.  I must find something!!
  5. I used to never get over heated.  I have a convertible, and I love to drive and feel the heat, and wind.  On Wednesday, I was on my way home and got stopped due to road work.  I was sitting still for about 20 minutes.  When I got home I felt sick, and dizzy.  I got way too hot.  How can I prevent this?  I have to keep WATER with me.  Not soda, WATER!  If I get stuck in traffic, I need put the top up and turn on the AC.
What do I want to accomplish this summer?
  1. Complete all the requirements for becoming a licensed foster parent.
  2. Perhaps take a vacation…something we haven’t done in a very long time.  Even a long weekend would be nice.  But traveling scares me…I’ll have to be prepared.  And we really don’t want to leave our dog.
  3. Take care of me.  (read *pamper* here)
  4. Read more books.  I really don’t know if this is possible, but I’ll give it a go.  (I love to read!)
  5. Enjoy my birthday!  (July 2nd)
  6. Spend time with hubby.  (I don’t really care what we do, just as long as we do it together.)
  7. Enjoy my pets.  Especially Sandy, on July 2010, the vet told us that Sandy had 6 months to a year to live.  I don’t think anyone told her!
  8. Enjoy driving.  (something I haven’t been able to do much for the last 2 years.)
  9. Enjoy our garden!  This is the first year we’ve tried growing a vegetable garden.  I keep looking at a friend’s garden and think…”Wow, why does their garden look so much better than mine?”   Oh yeah, they aren’t using all organic practices.  Let’s just say I now understand why organic produce cost so much more.
No matter what your plans for the summer, be sure to take care of yourself.  Keep things close to you that make you feel good.  For example: I take a bath every night right before I go to bed.  It really helps me get to sleep, feel more relaxed, and hurt much less.   I put lotion on every night, often my husband puts special peppermint lotion on my feet.  (My feet get hot at night and the peppermint makes them feel cool.)
Spend time with people who are good for you.  Avoid people who are toxic.  (you know who they are, you may feel like you have to spend time with them for some reason or another, maybe they are family, but you don’t.  Just say “NO”.  You can do it.  I know you can.)
Enjoy yourself.  That’s the most important thing.  Find ways to make your life easier, and more enjoyable.
Then pass it on.  Let other’s know what secrets you have found that make you feel better.
What’s your plans for the Summer?

Much better.

I wrote this post yesterday but for some reason I didn’t post it.  I still want to let everyone know what was going on, but I also want to say that the tinnitus has calmed down to a tolerable level, and my hearing is almost back to normal.  I’m feeling much better!!

But this was yesterday:

As we all know, I’ve been under a LOT of stress lately.  I’m really trying to take care of myself, but I still feel pretty crummy.

Last Thursday, I woke up and the hearing in my left ear had significantly dropped.  Now, it’s been over a week, and still my hearing is down.  I can’t remember a time this has ever happened before.  Normally, if my hearing drops I have an attack shortly afterward.  My last attack came after 4 days of diminished hearing, and that was unusual.

After the scare with my hubby, I have been so very tired.  I’ve been sleeping A LOT, and mainly just lying around.  I keep feeling off-balance, but not spinning.

Last night the tinnitus significantly increased.  And I really mean Significantly!  My left ear is roaring so loud I can hardly concentrate on anything else.  Sleep is almost impossible.  (I did doze on and off all night.)  It’s just so dang LOUD!  My head hurts.

I just want to scream, “What the F*%&?”

I’ve been feeling like I’m on the verge of an attack for over a week.  Hearing dropped, fullness increased, tinnitus increased, and disequilibrium is icky.  Being on constant alert is so tiring, and painful.  Yes, I said painful.  I am in knots, all over my body.  I am so tense I just can’t relax.  Every night before I go to sleep I have to take a hot bath to try to help the pain.

On top of that, I can’t stop thinking about how close I came to losing my husband.  I just don’t know what I would do.  He is just so much of my life.  My best friend, my lover, my care-giver, my provider….  Not only would I be losing the love of my life, I’d be losing my stability.  I feel horrible for thinking about those things.  It has been so hard for me to give up so much of my independence, and I finally came to terms that I can rely on him, and accept his help…but what if, in the blink of an eye, it was all taken away?  Yes, we have life insurance.  I would be provided for monetarily for some time, but money can’t give me what Stuart does.  He accepts me, he loves me, he is always there when I need him, and I need him a lot.

I’m working on it.  But that was a big scare, and it will take some time to deal with it properly.  I just hope it did some good.  I hope Stuart can find more in life to make him happy.  He has a career he’s not that happy in, but we need the money.  I would really like for us to be able to get in the position where he could afford to make much less money, and where I could contribute.  Having a job you love is much more important than having money.  Unfortunately, with the medical bills, and a mortgage, money is pretty important right now.  We thought about down sizing, and simplifying our lives, but selling the house in this market…not really possible.  But I want to have a plan.  A plan to change things.  I want for Stuart to find hobbies or volunteer work that he can find happiness in while he still has to work in a career he really doesn’t like.  We can do this.  I can help.

thanks for listening.  I feel much better today.  : )

Company Coming! Excitement and Worry all rolled up.

Tonight one of my very best friends and her husband will be coming for a visit.  Not only is Kym a great friend, she was once my roommate, and my maid of honor. (Which I think was a great honor considering I only had one attendant.)

During our wedding ceremony. (l-r) Kym, Wendy, Stuart

I haven’t seen Kym and Camden since their wedding 4 years ago.  Unfortunately, we live on opposite sides of the US, about 3,000 miles apart.  They live in San Francisco, CA, we live in Durham, NC.  So, of course, I’m VERY EXCITED!  However…

I’m also a bit worried.  Kym and Camden are very energetic people, they love to site see and just go, go, go.  Well, the go, go, go is a little hard for me.

Let me explain with a little side note:  Yesterday I was telling Stuart how much I hate it when a doctor asks me to rate my pain on a number scale,  0 being no pain and 10 being pain that sends you to the ER.  I think the amount of pain it would take to send me to the hospital (someone who absolutely HATES to go to the ER) a lot different than someone else (who doesn’t mind going at all).  I told him that the scale should be 0 for no pain and 10 for when I pass out from the pain, and I really think they should tell you what 5 would represent.  Stuart said he was glad that he hasn’t been in pain that often.  Once when he broke his arm, and when he had to have surgery on his knee…but not much.  I confessed that I can’t remember a day that I haven’t been in some amount of pain.

Now I guess you can understand why I’m a bit worried.  I really want to show my friends a good time, and do things with them, but I’ve been in a lot a pain lately.   I know they’ll understand, and wouldn’t dare think of me being in pain so I can do something with them.  However, I don’t want them to be bored.  And I really WANT to do things.  *sigh*

I’m still having trouble with my arm with pain and tingling, my wrist with carpel tunnel, my hip is still giving me trouble, and I can’t seem to walk very far without pain in my feet, calves, and knees.  I feel so old.  I feel like I can’t do much at all before I get so tired (or hurt too much) and have to sit down and rest.  Every night I’ve been taking a hot bath before bed, it seems to help dull the pain, especially in my legs and hips, so I can go to sleep.

I keep waking up in a lot a pain, and I feel exhausted.  I wonder if I’m hurting so much while I’m sleeping that I don’t sleep deep enough to rest?

I’ve been baking today, and I’m exhausted.  I was trying to make gluten free hot dog buns.  After 3 tries, I gave up.  So no buns for the cook-out tomorrow.

They’ll be here in about 3 hours.  Think I might take a nap.

Thankful that I know…

When you are suffering for a long time and don’t know what’s wrong, when doctors look at you like it’s all in your head (and some even tell you that), when it takes years and still no one knows…it’s so nice to be diagnosed.

art by Aquatic Fishy at Deviant

Some of my illnesses were diagnosed fairly quickly, and still some things are still pretty vague. (chronic hip and pelvic pain – ummm, why?)

I know it may sound weird but I was so happy when I found out that I had a wheat allergy, gluten intolerance, hypothyroidism, Meniere’s, hypoglycemia, a B12 deficiency, a Vitamin D deficiency, and finally and most recently fructose intolerance.

Each of these diagnosis took a long time to discover.  Especially the wheat allergy (gluten intolerance) and Meniere’s.

For years I was sick.  I saw a note in my medical records one time from a doctor that said, “This patient comes in with a laundry list of complaints….”  I was shuffled from doctor to doctor.  I was told I had Fibromyalgia, chronic fatigue, and IBS.  I had to learn to live with it, and I did for years.  I even started a local Fibromyalgia support group.  (I’m so very thankful for one very special friend that came from that group.  You’re great Lisa!!)  But I never stopped looking for an answer, or something that could help.

Finally, I was reading about food allergies and asked my doctor to test me.  Come to find out I have a wheat allergy.  Thank Goodness, I found out.  I stopped eating wheat immediately, and started feeling so much better within weeks.  Then I read about how many people can not tolerate gluten, and the symptoms for celiac disease.  A lot of these symptoms fit me, so I decided to stop eating gluten, and it was like a light switch came on in my life.  I no longer felt like I had the flu all the time, or that I needed to sleep most of the time.  I had a new lease on life.  I’m so grateful.

I had vertigo attacks on and off for years, with a full feeling in my ear and a constant ringing, but no one could tell me why.  One night after having vertigo and throwing up over 8 hours my fiance (now my husband) took me to the emergency room.  The doctor there told me that he thought I may have something wrong with my ears.  Perhaps the crystals that some people get, or something else that causes vertigo…he even mentioned the possibility of Meniere’s.  I loved this doctor.  I was so grateful that he believed that there was something wrong with me, and I wasn’t just getting food poisoning over and over.  (yes, that’s what I had been told.)  So I went to an ENT, and he said I have Meniere’s Disease.  I was so thankful to know something.  Am I happy that I have Meniere’s? NO.  But I am just so thankful that I have a diagnosis.

I’m so happy to be involved in the research going on at Duke to find out if an imbalance of Cerebral Spinal Fluid (CSF) may be one of the causes for vestibular vertigo in some Meniere’s and Ramsey Hunt Syndrome patients.  I was so very happy to find out that I had CSF leaks and they could patch them. My life is a new again.  (no vertigo for over 2 months now!)

Most recently, after 7 months of chronic, almost daily, diarrhea; and a battery of tests, I am so thankful to find out that I have Dietary Fructose Intolerance (or Fructose Malabsorption).  Yes, it makes eating much more difficult, but I’m already feeling better after just one week.  What a difference knowing can make.

Am I thrilled to have so many chronic illnesses?  Of course not.  But I’m so thankful that I know.

I’m also thankful for all that I’ve learned from having chronic illnesses.  I’ve grown so much as a person.  But that story is for another day.

Thank you all for supporting me through all of time trials.  Isn’t it great to know?

Love Makes It So Much Easier.

I’d like to dedicate this post to everyone who loves me, or who simply shares their love with me.

I often mention how much my husband does for me.  He not only takes care of my physically when I can’t, he does housework, and he also holds down a more than full time job.  He also puts up with me when I am having a very short-tempered day because I’m not feeling well.  He does all of this because he loves me.  I can’t imagine how I would get through all of my trials without him.  (I’m really glad I don’t have to.)  Thank you husband, for being there when I’m my sickest, for listening to me when I just need to scream, for encouraging me, for being strong for me when I don’t feel very strong myself and for still flirting with me and making me feel like I’m sexy.  Your love is very important to me.  I hope you know how much I love you.

To my dear friends who still accept me as I have changed with this disease.  I know I’m not quite the same friend you originally met, but I sure am glad you stuck by me.  I love it when you share your life with me, and tell me what is going on with you and just don’t even pay attention to my illness.  Those are special days to me.  However, I am also grateful for the days you let me cry on your shoulder and tell you  how hard things are, it’s nice to be able to talk about it and know you aren’t being judged.  You have been a great friend.  Thank you for loving me.  I love you too.

To my wonderful blogging friends.  You have listened to me possibly more than anyone.  You have heard mostly my down times, and you are still here.  I love you for that.  You encourage me, and have helped me to come to terms with my illness.  You may not know me personally, but you have shared your love with me, you have reached out over many miles and given me hope, knowledge and friendship.  I thank you, and love each of you.

I would be remiss in this post if I didn’t mention the love of my pets.  Our darling dog Sandy, and loving cat Max.  They are always looking out for me.  They know when I don’t feel good and always try to make it better.  I often feel like I’m a pet pillow (at least I’m not a Pillow Pet!), but they just want to be as close to me as they can.  They are always there for me.   They warm my heart, I love them so and can’t imagine my life without them.

I’m a very lucky person to have so much love surrounding me.  It really makes living with a chronic illness easier.  At one point I thought it would be easier if I was alone, if no one cared.  Then I could just drift away and it wouldn’t matter.  I was in a deep depression and felt my life was over.  I couldn’t see how I could possibly be of any use to the world being in the condition I was in.  I’m very grateful I had some wonderful people who loved me and made me realize I had something to live for.

I love you.

This post is part of Patients For A Moment blog carnival, hosted this time by Chronic Babe.

Please Don’t Judge Me

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.

ABC’s of Disability – “C”

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.

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.