Am I a Patient?

Sharon at After Gadget, is hosting the PFAM carnival this time.  She posed the question:

What makes someone a patient? When, and in what contexts, do you think of yourself as a patient, and when do you not?

I thought, and thought, and thought….and I came up with…First –

What makes someone a patient?  So I looked it up. (I looked it up in a few sources and came up with generally the same answer, but I liked Wikipedia’s answer the  best.   The original meaning of the word patient is “one who suffers”.  The meaning today” is any recipient of healthcare services.”

With this in mind: Yes, I am a Patient.  According to both definitions.

Second part:  When, and in what contexts, do you think of yourself as a patient, and when do you not?

For that I decided….well, it depends.  I know this is a very insightful answer, so I will elaborate.  Bear with me, I ramble when thinking about things like this…heck, if you read this blog, you know I ramble often.  : )

A lot of the time I do consider myself a patient.  My treatments aren’t over, I still have plenty of doctor appointments, I still take a ton of medication, I’m still dependent on someone else, so yes I’m a patient.  I had a lot of trouble with my husband being my caregiver for a while.  I felt like I was no longer his wife, I was his patient.  What could I do for him?  He has been everything to me.  He not only provides for us, he does the housework, the meals, bathes me, helps me with personal hygiene.  Many…many times he’s held my head and calmed me when I had vertigo for hours and just kept throwing up.  He’s put in many suppositories, and every time I feel horrible about it, and I cry.  I often feel like we’ve changed, I’m now his patient.  But I’m more than that..

Often, we will have touching moments together, we’ll curl up and snuggle, he’ll tell me how hot I am…just today he was helping me and brushed my breast, and said, “you know I only did it that way so I could touch your boob.”  He makes light of my illness, not in a bad way, he doesn’t dismiss it, but he never let’s it get in the way of being my husband first.  He’s simply thankful he can be here for me, just as I would be for him.  We enjoy the wife/husband/friend relationship as much as we can.  He NEVER lets me forget that I’m more to him than someone he has to take care of.

Yes, I am a patient.  But I’m so much more than that!

A Wife.  A Friend.  An Advocate.  A mom to my Furry Babies, Sandy and Max.

And I’m an artist!

Free

Sometimes I want to shout loud enough for all the world to hear:

I AM MORE THAN MY ILLNESS!

But Sharon asked more than that.  She asked how I refer to myself.  That depends on who I’m talking to.

If I’m meeting someone only Stuart knows, I refer to myself as Stuart’s wife.  If they ask what I do, Stuart usually says, “She’s an artist.”  He’s proud of me.  But if he doesn’t, I usually do say I’m an artist.  If the conversation persist for a long time, I may say that I’m not a professional artist right now due to my health.  (If you’d like to see some of my work, see my other blog: Create to Heal.)

If I’m talking to a friend, I’m just Wendy. However, recently I felt I had to explain a few things to some of my family and friends.  People just didn’t seem to get it.  I was told I “deserved better”, and I should “find new doctors”, and “that insanity is trying the same thing over and over and expecting different results”.  The treatment I’m undergoing has given me different results.  It usually works (on at least some of my symptoms), at least for a little while, once it worked for almost 5 months…I want to get back to that.

So I wrote a detailed explanation to them, letting them know that I have a CHRONIC Illness, it is not going away.   I explained exactly what Meniere’s is, and how I’m in the advanced stages of bi-lateral Meniere’s.  I know I’ve explained it before, but people seem to think it will go away.

I may not deserve this, but who does?  No one I’ve ever met.  I explained that I have some of the best doctors in the world helping me, doing much more to try to help me with this disease than most doctors would.  Well, you don’t need to hear the whole note.  The point is, I felt I had to point out that I am a patient.  I didn’t use those words, though sometimes I do.  I’m a Meniere’s patient.

Often when I meet people for the first time, I’ll try to hear them or read their lips before I announce I’m hearing impaired.  Usually, I have to say, “I’m sorry I’m hearing impaired, can you look straight at me when you talk and talk slowly so I can understand you?”  That usually works, but it’s funny to me how fast people forget, they try to do what I ask, then they will look away, and forget all about it.

It’s hard in hospitals or doctor’s offices because they aren’t supposed to talk softly to insure the patient’s privacy.  So I say very loudly, so they know I need to hear them, that I have Meniere’s and I need you to talk loudly, look at me…..  Often, hubby has to translate.

When I’m talking to or about some of my Chronic Illness friends, that how I refer to both.  I’m a chronic illness blogger, I have friends with a chronic illness….we don’t all have the same thing, but we are kindred spirits just the same.   We get it.

I’m not sure I really answered Sharon’s questions, but it made me think.

My conclusion?

In my heart, I’m a wife first, because my husband is so very dear to me.  I’m mommy to Sandy and Max…my furry babies…again because they are so dear to me. The rests are almost tied. I’m a friend, I’m a blogger, I’m an advocate for my illnesses, and for myself….and last but certainly not least I’m an artist.

I’m sure some would give me even more titles, but these will do for now.

Please make sure and stop by Sharon’s blog, more than once her post have moved me, made me cry, and made me think!

The PFAM carnival will be up on her blog After Gadget, on Wednesday October 26th.  Check it out, and think….How do you define yourself?

It’s the Little Things.

I created this the night after my bad attack. (W. Holcombe all rights reserved)

It’s the little things that make me happy right now.  I felt so proud of myself today.

I spent the entire day out of bed.  I even got my meals for myself…well, all except breakfast, Stuart was making that for me when I got up.

The meals I got for myself were just left overs, but I did it!

I walked by myself, and cleaned myself up…all by myself.  (yes, these are things I haven’t been able to do without help.)

I filled 5 pages in my sketch pad today.

My internal clock is still way out of whack.  I can’t seem to get to sleep before 3 or 4am. …and then don’t get up until about noon.  If I try to get up earlier so I can go to bed earlier, it just doesn’t work.  Either, I feel like crap all day, and risk having an attack because I didn’t get enough sleep.  Or, I still can’t get to sleep until the wee hours of the morning.  Ugh.  Guess I’ll talk to my doc about it next time.  I hate taking something to help me sleep, but perhaps I could take something for a little while to get my clock back on schedule.

I hope I have more days like today, and continue to feel better.  It’s been a rough road lately….but I’m making my way down it.

I feel so guilty.  I’ve told so many people about the success I was having after having my CSF leaks fixed.  I know of a few people who sought out the treatment because of me.  I’m not saying that I’ve given up, or that I think things won’t get better.  But right now I’m not sure, and I’m just afraid I made it seem too easy.  I think I’ve always let everyone know this is an experimental treatment.  However, it was working so well for me.  I was normal again.  I just want for all of us who have that feeling…being normal.   Did I give people false hope?

Even if this treatment ends up not working for me, I have always said, I hope they will learn something from this, and can help others.

Once again, I feel at a loss for the right words to express how I’m feeling.

I’m full of guilt, fear, and anger, yet…I’m still full of hope, and feel like I’ve found a part of me that has been missing for a long time.

I hope you guys understand.

Recovery is a bit rough this time. (this is my 150th post. You guys are awesome!)

After all the warnings from previous procedures that my pressure could spike afterward…and it didn’t…well, I thought it just wasn’t going to happen to me.

Ummm. WRONG!

My  pressure spiked, and my head has been killing me.  I’m taking Diamox to lower my pressure, and that scared the bejebez out of me.  (No, I have no idea how to spell Bejebez but if you use phonics, it sounds right…doesn’t it?)   Any way, I’m petrified that I’ll get my pressure too low, and start spinning and all of that mess.

I’m having the weirdest tinnitus in my left ear.  Sounds like a rail road train, (sometimes), other times, it sounds like a very loud squeaky swing….and just all kids of things…but that’s not the weird part.  It changes if I put my hand near my ear.  If I touch around my ear, it gets louder!  And if I hic-up (which I seem to do very often), it has a very loud DING-DONG.   Driving me insane.

Think I may have taken too much Diamox yesterday (Dr. Gray was pretty vague on how much to take, take it until the headache stops.  Up to 1500mg at one time…notice not in one day…but at one time.)  Feeling kind of lost there, but since I couldn’t actually talk to her, well, Stuart doesn’t think to ask some things.  But yesterday, the world was spinning, I was amazed I wasn’t throwing up.  The world was really moving!!

My usual spot for the past week. Lots of love surrounding me.

I’ve spent the last 6 days in bed.  Well,, I tried to get up to the couch a couple of times…so I was probably up for about 3 hours total.

I feel so helpless.  Stuart usually has to help me get to the bathroom…even pull my pants down…how humiliating!  And then the most humiliating thing…and I really thought I was better about this…is when he has to give me a suppository.  I just feel so …. dependent…helpless…and just icky.  When your husband sees you naked, it shouldn’t be to put medication up your butt! Or help you go to the bathroom!  Yuck.

I feel like I have some terminal illness, and I’m just waiting to die.  It reminds me so much about taking care of my mother when she was so sick.  I know she never planned for her daughter to have to do private things for her.

And to top it all off, my hearing aid BROKE!  For the second time!

You may remember this picture below when I was showing off my new hearing aids:

The one on the left, is the one that keeps breaking.

For the second time now, I was cleaning my hearing aid, just rubbing it gently with a tissue, and the little part that holds it in your hear, has snapped off.  I’d only had the second hearing aid for about a week.  I’m so ticked!  I’m asking them to make me a new one out of the same stuff the right one is made from.  It is a much sturdier material.  The clear plastic, just cracks, like old dried up plastic does.  It’s so strange.  I’m getting a hearing test on Sept. 6th, and they will order the new hearing aid then.  (I think they have to make a new mold for this type of insert.)

I think that’s all for today.

I did want to mention, If you liked seeing and hearing about how my art has been helping me through all of this, I started a new blog that just talks about that.  It’s called Create To Heal .  Come see me, let me know what you think.  Join me in my journey.  Create Art.  Have Fun. Feel Better!

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?)

An Evil Goblin Lives in my Head.

I’m finding the drawing journal to be very therapeutic.

Day before yesterday was a very, very bad day.  I was awakened by one of the worst headaches I’ve ever had.  The lower part of the right side of my skull, and down my neck was…well, I can’t think of a good adjective…let’s just say, I was in a huge amount of pain.

Throughout the day I kept trying different meds to see if anything would work.  They sometimes made it better, often not.  I was nauseous, and just miserable.  That afternoon, I turned to look at Stuart and the world moved.  I felt all the symptoms of an attack starting.  The world was off-balance, but not completely spinning yet, I got HOT, I didn’t feel like my head and my body were listening to each other….I told Stuart…”It’s coming!”  He ran and got my medication, some cool wash clothes, and trash cans….he was getting prepared.  I’m happy to say the whole world spinning part didn’t happen, I didn’t throw up…but I was amazed when it started to calm down and didn’t become a full-fledged vertigo attack.  (I have a question, anyone else out there who has these attacks, when it first starts to you really have to go to the bathroom…bad?  Every time it starts, I have to go!  I don’t want to get up and move to go to the bathroom, I just want to stay as still as possible…but I can’t I have to go!)

For the rest of the day, the tinnitus was very loud, my head hurt, and I was exhausted.  I had to use my walker.  (very strange thing I’ve noticed, a lot of time when the tinnitus is at it’s worst, I can hear better….isn’t that the strangest thing you’ve ever heard?)

I’ve decided that I have an Evil Goblin living in my Head!  And he looks something like this:

Doesn't he look Evil?

These are his torture devices:

Look Familiar?

Here’s another sketch of my Evil Goblin (the original looks better.  I didn’t realize photographing graphite was so hard.)

face of the Evil Goblin in my head.

I hope you have enjoyed a view in my head.

Wanted to let everyone know that my appointment with Dr. Gray has been moved up to the 22nd.  I’m still on the cancellation list and if anything comes up before then…keep your fingers crossed.

Living for the day.  One day at a time.

Sketching Journal

I was writing in my journal and decided I needed to add a picture of how I was feeling:

Yes, my head was hurting, and the tinnitus felt like a jet engine in my ear. This was not the best day. But the sketch was therapeutic.

Today I started sketching more as I was writing.

I was inspired by these two awesome sites:  http://www.sustainablycreative.net/ (thanks Phylor for telling me about this.)  And, http://dannygregory.com/ 

Illustrated journals can be so interesting…and inspirational.  Here’s the beginning of mine:

Decided to draw what I could see.
Having a Bad Balance Day. Thankfully, the net will catch me. (today my net has been Stuart, thanks hon)

The past two days I haven’t been able to hear much at all.  The tinnitus has been better, and the headaches have been less intense…but hearing…well…not so much.

Today, I had a mini-attack.  I felt it coming.  The world was starting to move, my stomach was doing flip-flops, I had that hot feeling….I just knew things were going to start violently spinning any moment.  Stuart kept a cook head, as usual, I was a little panicked, but worked hard to stay calm.  After taking Valium, and Phenergan…plus a phenergan suppository…things calmed down.  I’m still off balance, and not trusting myself to walk without my walker.  But I didn’t throw up!!

I hope you enjoyed my illustrations.  It felt good to accomplish something, even though I couldn’t get off the couch!

 

Remembering Past Happy Places, and my Happy Place Now.

I was visiting a few sites and saw that this month’s edition for the PFAM (Patient’s For A Moment) blog carnival hosted by FibroDAZE asks “Where’s Your Happy Place?”

This really started me thinking of how my “Happy Place” has changed over the years.

When I was a little girl I had a couple of “Happy Places”.  One was my closet.  It wasn’t a very big closet, but I loved to take everything out of the floor, and just play in there, I even remember camping out in my closet.  On the same note I had a toy that was like this big tunnel tube, I loved it.  Both of these places gave me a quiet place for me to go and think…or hide…and let my imagination run wild.

My tube was bright Green, with a design on it. But you get the idea.

My next “Happy Place” that I remember was my “tree house”…

This is a tree house palace compared to mine...but I loved it.

I “tree house” put that in quotes, because it was really just boards I nailed together as a makeshift ladder to get up in a tree, and a couple of boards wedged in the branches to sit on.  But oh how I loved it…and the happy times I spent there.  Again, a place I could go to think, hide, be by myself….and let my imagination run.

When I was a teenager, I had 2 “Happy Places”.  One was right down the road from where we lived.  There was a family who had horses.  I used to sneak on their property and visit the horses.  After a while, I started to brush them, and groom them….one day I was caught.  Luckily, the family was very nice, and offered to let me ride any time I wanted as long as I continued to come and take such loving care of their horses.  (What a deal!  I was 14, and considered this my first job.)  On the back of those horses, I felt free!  Safe, and happy!  I had a purpose…and I loved every minute of it.

Me, just a few years ago at Long Beach, CA. As you can see, still a Happy Place for me.

My other “Happy Place” when I was a teen…and I admit it is still a very Happy Place for me…is the beach.  We used to live a little over an hour from the beach. When ever I was having a hard time, my mom would say, “Let’s go to the Beach today!”  We’d take off, and spend the day at Huntington State Park  (near, Myrtle Beach, SC).  It was a bit secluded, we would take a picnic and just have the day together…and by the time we left, what ever was on my mind, what ever was troubling me…well my mom knew all about it, and always seem to make it better.  The beach was our special place, and still whenever I get a chance to go to there, I can feel my mother’s presence.  (Unfortunately, I can’t go as often as I used to.)

The Jockey - One of my paintings from college.

In college, my “Happy Place” was in the Art Studios at school.  I was at peace there.  I was in my element.  A friend once told me that she loved art, but I ate, drank, and slept with it!  It was my life…my how things have changed.  I miss that girl.  (I was excited last week when there was a Painting Category on Jeopardy, and I answered every question right!  Perhaps I still know a thing or two?)  When we bought our house, I planned for my art studio to be my Happy Place, but things just haven’t worked out that way.  Hopefully, I’ll begin to feel it again soon, but for now, it’s mainly just a room that stores all my art supplies.  It kind of makes me sad…all the potential…but still full of a lot of hope, and vision for the future.  If you are a regular reader of this blog, you will know that I’m currently trying to find my artist within again.  I’m sure she’s in there, look forward to meeting more of her soon.

This week I’ve been thinking about where I feel the happiest.  Admittedly, I’ve been going through a rough patch, and a happy place can be a bit hard to find.  So I thought…and thought…I remembered all my past happy places, but they just didn’t seem to fit now.  Then I felt it…the warmth enveloped around me…and I knew I was in My Happy Place.

Where is my Happy Place Now?

I kept coming to the same conclusion:

In my husband's arms! My Happy Place!!

and with my little Family!

Do you have a happy place?  Tell me about it!

Birthday musings, and getting creative

How many of us start to look at our lives and come up lacking in some way, especially around our birthday, or the beginning of the year.  We make goals, or resolutions….sometimes we actually keep them.

This year is no exception for me.  I knew I was getting close to my birthday because I started looking in the mirror with a more critical eye…humm, not as young as I used to be.  Heck, I don’t even think I look as young as I did last year at this time.  Gained a few pounds, more gray hair, a few more wrinkles, and these little dark patches on my face…could they be *gasp* age spots?  {shudder}  Yes, my illnesses over the past couple of years have worn me out.

a look in the mirror

I’m already trying to lose weight, 6 pounds so far!  Now if I can just keep it up.  I’m also trying to get some more exercise, that hasn’t been going as well as I’d like, I get dizzy every time I exercise.  Hopefully, that won’t be the case much longer!

I thought about coloring my hair, but do I really want to put those chemicals on my hair.  I finally got to the point where I think all of my hair is naturally my color.  Yes, some of it is gray…but it’s me.  I’ve always liked my cool gray streak on the left side, right in the front, but now it’s on the right side too.  I don’t think I’m looking cool any more, just old.  I’m thinking of putting a natural rinse on it to make it a little shinier, a little browner, and possibly make the gray look more like highlights.  It should just wash out.  If I decide to go this route, I promise I’ll post pictures.

For the wrinkles and dark spots (I will NOT call them AGE SPOTS!), I’ll use a bit more moisturizer, and perhaps some lemon juice and hydrogen peroxide applied to the spots will help lighten them.  We’ll see.  The hubby pointed out that there was a Groupon for a Chemical Peel.  Ewww.  I told him I was not vain enough to hurt for it!  (I don’t really think he understands what a chemical peel is.)  I can’t tell you why, but I got so tickled when I told him I wasn’t vain enough to hurt for it, I mean I just laughed and laughed.  Stuart thinks it’s very amusing how I crack myself up sometimes.

I’m thinking I will go out and buy me a new outfit.  Something that fits better, that makes me look more put together.  In other words, not the over sized T-shirts and shorts I’ve been wearing.

The Artist's Way by Julie Cameron photo courtesy of http://www.theartistsway.com

I’ve also decided on joining a group on another blog Ton-Fifty-ONE is going to be having a workshop covering the book The Artist’s Way, by Julie Cameron.  The workshop is 12 weeks long, and will start on July 4th.  Just 2 days after my birthday, how fitting.  I’ve owned this book for years, and I’ve tried to go through the process more than once, but I guess I’m either not good at following through something like this without a little push, or perhaps it was made me confront too many issues?  I don’t know, but I’m willing to try it again, and I’m sure that with the push that a group will give me, I can do it this time.  Just 12 weeks…3 months…to “discovering and recovering my creative self”.  If anyone wants to join me on this journey please come along.  I know I can use all the motivation I can get!

My creativity got bogged down by my chronic illnesses.  My biggest goal this year is to use my creativity to help me with my illnesses.  Help express myself…  The words are failing me, I can’t seem to get out what I want to say.  I guess I’m trying to say, I believe in art therapy….and so much more.