Tag: Disability

The Good, The Bad, and The Ugly – all in just a few days.

On By WendyIn Chronic Illness26 Comments

This is not the post I’d planned to write, but life has thrown me for a loop so I’m telling it all….

The Good

On Thursday it was a beautiful day.  The weather was perfect with temperatures in the 70’s F, and clear skies; an amazingly gorgeous day for the second day of February.   I decided to take a drive for the first time since June.  I haven’t had vertigo for over a month so why not?  I went to a small town just north of us, it wasn’t a long drive and I chose that route because there is very little traffic on the road.  The top was down in my little car, and I had a blast!  What a milestone!!

Not so good – we went to our ASL (American Sign Language) class Thursday night.  This was our second class. I’m not sure I’ll go back.  I keep telling the teacher and the students I’m hard of hearing.  I’m so very lost in the class because i can’t hear what’s going on.  If Stuart tries to tell me what I’ve missed then he misses something.  I was so upset, I teared up 3 times, and came very close to just walking out.  To explain some of my frustration,, we have exercises where we each say things in sign language.  Then the teacher will call on someone to translate what the person said, I couldn’t hear what the person was saying so I have no idea if I understood what the person was saying in sign language.  (note, this is just one example).  I do not see how I’m going to get anything out of this class.  Stuart is going to write the teacher.  One huge problem, they allowed too many people in the class.  So there are 16 people in there and I’m the only one who is hard of hearing.  I feel so isolated and sad.  The one place I thought would be more understanding, and help me, is simply ignoring my needs.

The Bad

Friday I had slosh head all day, and was afraid I was catching a cold.  The weather had changed, and we had cleaners come in on Thursday (I’m sure they kicked up a lot of dust), so I   wasn’t that worried about it.  Probably just barometric pressure change and allergies.  Yesterday, I had minor slosh head, better than the day before, still didn’t think much of it since it was now raining.  We decided to go out and do some things.  When we were in Earth Fare (a small healthy grocery store), I turned to look at Stuart and the world spun around.  I tried to brush it off as a little disequilibrium but couldn’t.  We went to the little cafe they have so I could get something to drink and take my pills.  I sat for a little bit but things were not getting better, I had the overwhelming desire to curl up on the floor.  We hurried and bought our little bit of groceries and headed home.  Once in the car I was still feeling horrible and got Stuart to search around for something I could throw up in if I needed to.  I then took another Valium.  I don’t normally take them so close together, but we had a 25 – 30 minute drive home, and I did not want to have a severe attack in the car!  Wonders upon wonders it worked.  When we got home I was still pretty off but I knew the worst was not going to happen.

The Ugly

** some of the following may be too graphic for some readers.

Today I was just waking up and stretching when I felt my husband kissed me.  A pretty nice way to wake up huh?  The first thing I really noticed was how loud the tinnitus was.  My head was still a bit sloshy, and today it was also screaming at me.  Since I was a bit off, Stuart made me some breakfast and brought it up to me.  (oh, I have to admit he does this a lot any way…what a guy!).  After breakfast I felt exhausted and thought perhaps I should sleep a bit more.  I put my sleep mask on and started to doze, suddenly I felt like I was moving.  Stuart walked in the room and I told him, he grabbed me some pills.  I had to go to the bathroom.  He helped me there and left, but I ended up having to call for him to help me.  I couldn’t stand, pull up my undies, or anything.  He rushed in and helped me and nearly carried me to the bed.  By then I was in full spin.  I grabbed a second Valium (it worked the day before!) and Stuart helped with a Phenergan suppository.  *ick*

I kept trying to focus on one spot but the spot kept moving around and around…I was getting sicker by the moment.   I was nauseous, but hadn’t had the tell-tell sign of the extreme heat that usually precedes the vomiting.  Oh…but the diarrhea….I knew it was going to blow if I could make it to the bathroom or not.  I also knew if I moved my head enough to get up and go to the bathroom I was going to start throwing up. What to do?  I was getting pretty upset by this point…all the chanting of affirmations and envisioning myself as a tree with strong roots that cannot be moved were not working…I was starting to panic.

My dearest darling husband created the portable bed pan (a trash can with a liner) once again, like he did when I was stuck in bed for a week after surgery not able to raise my head.  So I scooted my butt off the bed over the trash can, keeping my head very level…and exploded!  Oh my gosh, I had no idea that was going to happen.  Sometimes the suppository makes me really feel like I have to go, but it just dispels what’s left of the suppository and a little bit more.  This was gross.  I was so embarrassed and just completely grossed out.   I kept apologizing and crying a bit.  After that ended, the vertigo started to subside.

Stuart was so wonderful.  He told me he’d much rather deal with the bed pan situation, than for me to throw up.  He said it’s so much easier on my body.  And he’s right, but the diarrhea in the make shift bed pan, and having to have him clean me up…that’s much higher on the embarrassment scale.  I guess I just need to get over that, and I’m so grateful I have a husband that will do anything to help me feel better.  He’s very right though, the vomiting is terrifying, and much more painful.  So I’ll swallow the embarrassment I guess.

I’m still slosh headed, and feeling a bit wonky.  I’m exhausted, have napped a bit on and off, but I keep waking up feeling worse.

 

When we walked out of the store yesterday, with Stuart helping me hobble to the car, I said to him, “Well, the surgery is supposed to make the vertigo 70 – 90% better, they never said it was gone.”  Very stoic of me, holding it all together.  However, once we were in the car and on the way home, I broke down.  I thought about how I drove just 2 days earlier, what if this had happened then?  I thought about how all I wanted to do in that store was curl up on the floor and pray for the room to stop.  What if I had been alone?  I feel like every time I feel I’ve made an advancement and can make some plans, the floor falls out from under me.

Even more reason to live every day as it comes!  I do not regret my drive, and I wasn’t far from home.  If I had gotten sick, I would have pulled the car off the road and called for help.  I would have handled it!  If I had been at the store alone…well, that would have been more difficult.  I probably would have taken my pills and left the groceries.  Gone to the car and called for help.  I’d rather be alone in my car dealing with this than in a public place.  I may worry, but I’m confident if the worst happens I will be able to handle it.

Quick update – The little family is doing fine.

On By WendyIn Pregnancy Complications8 Comments
Penelope and Chris on New Year's Day

My friend and her husband have arrived.  Not as much to worry about as I thought.  (Yes, insomnia played a big part in all of that.)

Turns out she doesn’t have preeclampsia, so all the rules have changed.  She had a lumbar puncture and found out her cerebrospinal fluid pressure was way too high!  I sure can relate to that huh?  So they drained some of the fluid, and they are hoping to keep that under control.  She may actually make it to term!!  (yes, that means they will be here longer, but that’s ok.)  They don’t know if they can keep the intracranial hypertension (the fancy name for high CSF) under control, or if it will turn into preeclampsia also, so they have to keep a close watch on her.  Of course, we are hoping she can carry to term, and will not have to spend any more time in the hospital before delivery.

She can’t do the stairs much just yet, but that’s mostly because she’s so sore from the lumbar puncture.  She’s still having headaches, they drained a lot of fluid, perhaps too much too fast (IMHO) so it’s taking a little while for her body to regulate the pressure.  Hopefully the headaches will ease soon.  Right now she’s sleeping.

Penelope is such a lovely person, and her husband Chris is so gracious, I don’t think this is going to be very stressful on me at all.  Actually, it could be very helpful in many ways.

I was feeling a bit anxious about Stuart having to go to Alabama for a week, probably the week of the 13th, if they are here I will feel so much better.   I didn’t want  to miss our sign language class, so I plan to drive to class that night, I think I’ll be fine, but just needed to know if I got into trouble there would be someone I could call for help.  I’ve already mentioned it to Chris, and he was happy he could help.

It completely slipped my mine last night that Chris is a cook!  He’s already thinking of creative things he can make that are meat all our dietary restrictions.  He even assured us that he knows how to be careful with gluten products.  He’s offered to clean house, cook…anything.  I think he just needs to relax a bit.  After a while, he can worry about doing more things around here, but for a little while, I think they just need the peace and quiet that is our home.

They have both been gushing about how wonderful it is to have a peaceful place to stay.  They are so worried about wearing out their welcome, but I told them, that we’d just treat them as if they were roommates.  Their room is theirs, our room is ours, the rest of the house is community space, and as long as they don’t expect us to wait on them hand and foot, they shouldn’t be any trouble at all.  I don’t get to see Penelope nearly enough, I haven’t seen her in a couple of years at least.  I’m happy they are here, and so glad we get a chance to renew our friendship.  (not that we haven’t been friends even though we have been apart, but this is a great chance to get close again.)

We may move the little TV in their room for a little while, when Penelope feels more like moving around we’ll hook the cable box back up to the big TV down stairs.  Stuart and I rarely watch TV, we’ve actually been thinking about getting rid of cable.  When we watch shows we normally watch them from the computer.  It’s easier to watch what we want when we want, and not have to rely on the DVR to record the shows we want. (it often screws things up).  The only thing I really watch on TV live, is cartoons.  But I can always pull those up on Netflix.  (yes, I am love cartoons.  Just like a kid, I can watch them over and over and not get tired of them.)

I love that we are able to offer our home to our friends.  They are special people.   It also makes me feel less isolated, and needed.

I will admit, my husband actually made me a bit more nervous about things last night.  When he said he didn’t know if he could handle people being in the house for so long, I got worried.  Then that jumped to wondering all about what they may need, how we could work things out…ect.  But now that they are here, I think everything will be just fine.  (just liken you all said…I should have known.  Thank you my friends for the reassurance, and guidance.)

About my sleep.  Once again I didn’t get to sleep until about 6am. I woke up at 1pm, right before they arrived.  Again, I had the terrors while falling asleep feeling like everything is spinning around.  Again, I had bad dreams, not nightmares, just troubling dreams.  and Again, I woke up with a headache. Not severe, thank goodness, though it soon turned into a full-blown migraine.  I have to figure out a way to make these things stop.  I know I don’t have much control over the migraine issue, I’ll have to see the neurologist if this continues after my recovery period is over.  But you would think something could be done about the spinning and dreams.  Sometimes I’ll take a Valium a little before bed, and that helps with the spinning sensation, but it makes my dreams a bit freaky sometimes.  And I’m not too sure if the doctor would approve of me taking a Valium every night.  I’ll ask him on Monday.

And about dinner.  I just tasted the sauce and meatballs, oh my goodness, I will have to post this recipe.  How delicious!  And so easy.  Stuart loves meatballs but I always hated making them.  Now, with this recipe, I can make them much more often.

Turns out Penelope can’t eat the sauce at all.  She can’t eat beef either, or tomato products.  (I think the tomato products may just be because of the pregnancy and heartburn, but I’m not sure.)  Chris, is going to make her some pasta with a little chicken, spinach, pesto….  Yes, as I said he can cook!  She won’t know what she’s missing though, these meatballs are wonderful.

Thank you for the nomination!! Updated

On By WendyIn Chronic Illness11 Comments

First let me say, I’ve started 2 posts and haven’t finished one…I also have some big news from today, that will just have to wait because I want to share something with you.

I don’t know who sent my name in, but I am so humbled, and excited that I have been nominated for a Health Activist Award sponsored by Wego Health.   To see the awards available, to nominate someone, or just find out more, please go to:  http://info.wegohealth.com/awards-2011/.  If you would like to be on the jury and help pick the winners go here: http://info.wegohealth.com/awards-jury/  Winners will be announced January 12th.

I was nominated or TMI Award (Too Much Information) Award – This Health Activist always goes there – no matter how personal or embarassing the story.

I was sent an email telling about my nomination, with a copy of what the nomination said, but it did not include who did the nominating.

I want to sincerely thank you from the bottom of my heart.

If I win our not, this nomination touched me so very deeply.

(BTW, to be shameless here, you can also vote to nominate me – or anyone you want – at http://info.wegohealth.com/awards-2011/)

I would love to win, but just being nominated  *getting chocked up here*  well, for someone who always lays it out there, no matter what, it’s hard for me to put into words just how much this effected me.

I just adore you, my dear, sweet readers.   You have supported me and have become so very close to me, I am proud to call you friend.

I thought some of you might like to read the nomination that was sent in.  (as you all know I’m pretty open and blunt…and so is this nomination….so beware if you are a new reader.)

Reason: I am nominating Wendy for this award because she shares every detail of her life no matter what it is. Currently she is going through recovery from surgery and described how her husband had to take care of her while using her bed pan-and as she is on her period! She also discussed how the hospital workers insist on giving you a PG test even if you have not been physically able to do the very thing that would make you pregnant. She made me laugh when she said her husband commented the silliness of this PG test prior to her surgery by saying “Well, if you are giving birth to the messiah we want to make sure we don’t cause him to have birth defects.” How many of us with chronic illness have been through that but never shared it. She did honestly and with humor. As seen in the comment section of her blog, people are moved by how in each blog she writes she is always herself and unguarded. Through her expression of how rough things can be, others can read her entries on depression or bipolar where she lays it out as it is. There is no film of protection on her writing. Wendy certainly deserves the TMI award. 🙂

I am so ‘effing STUPID!

On By WendyIn Chronic Illness19 Comments
Picture by: http://www.theshamsband.com

OK, today will be day 9 since they cut my ear from top to bottom around the back, and pealed my ear forward (basically, off),  then they took a piece of skull from my head, and opened up the cavity a bit more, so my endolymphatic sac would have more room, and I, hopefully, will have much less vertigo.

That’s the jest of it, and as you can imagine, it takes some time to recover from this.  A bit more than 8 days.

For a week, I had constant vertigo, could not even get out of bed to go to the bathroom.  Then it started to settle down, I started to walk again, I believed I was on the mend (still do, but no thanks to me.)  Yes, two days of improvement, and I think I can conquer the world…or at least the bathtub.

I’ve had a very hard time hearing recently …the past couple of days or so.  I hear about every third word my husband says.  I sound like a parrot who only knows hot to say, “What?”  The TV sounds like it has a broken speaker.  The tinnitus has been going crazy.  I’ve been getting more and more frustrated.  Not only because my hearing seems to be all wonky….in my right ear…my better hearing ear, but also because I am so tired of being dependent on someone else for everything!

Yesterday, I think a lot of the sleepless nights, and being a constant caregiver started to take its toll on my husband.  He was worn out.   I wanted something so badly, but I wasn’t about to ask him for it.   I wanted him to rest, and I was already feeling bad about how I was treating him.  When I get scared and frustrated…well, I sometimes start a fight.  I think I just want to be in control of something.

So I got all hot under the collar, and got up and went in the bathroom.

And took a Bath!  Yes, this is the part where you can say…ARE YOU STUPID, or CRAZY, or just what ever word you want to use to show I was not using the best judgement.  But oh, the water felt so nice, I relaxed so much, I dozed off for just a moment…then Stuart came in to check on me.  (what a guy, I blow up at him for nothing, and he still comes to check on me.)  I thought, perhaps now would be a good time to soap up, rinse off, and get out of the tub while I have him there to watch over and help me.

All went pretty well,  until I started to get up and out of the tub.  Then it all fell apart!  Stuart always wants to help, but I’m not a small girl, he only has about 30 lbs on me.  So I’m always afraid he will hurt himself, or we’ll end up falling together.  Plus…I’m like a kid sometimes…”NO, I can DO IT!  Let me DO IT!”  you understand.

Stuart was close, and trying to help me as much as I’d let him, and I slipped.  My knee hit the bottom of the tub, both ankles bent under me, and I hit my head on either the wall or the side of the tub.  I lost it.  I completely broke down.  Not because I was hurt that much, but because I did something so stupid.  (When I say I completely broke down, I mean sobbing and heaving and not being able to catch my breath because I was so upset.  I started to get dizzy, I started to feel sick….I had to calm down, but I couldn’t.  I knew taking a bath was beyond my limits right now, but I just had to do it!  How many times have I encouraged others not to do what I did tonight?  To take care of yourself, to listen to your body?   If you don’t take care of yourself, you won’t be able to help others…  Did I practice what I preach?  Heck no.

So now I have two twisted ankles, a bruised and slightly twisted knee, and a very small sore spot on my head.  I’ve had my legs elevated and ice on everything.  It looks better…we’ll see how it feels in the morning.  (I really hope I haven’t sent my recovery backward.)  It really doesn’t hurt any longer, I’m hoping it will all just be a bad memory in the morning.

Then to top everything off, I started to put on this oversized t-shirt I like to sleep in, and caught the neckline on my ear!  Yes…that ear!  Hours later and it still hurt.  Luckily, I didn’t rip open the incision.  Sturart says it looks good.  A little red at the bottom, but I think that’s because it’s itching and I keep rubbing spot right under the incision so I won’t scratch it!

So the next time you think about doing something that you know your body really isn’t up to…take it from me…Don’t do it!!

Take care of yourself.

I hope my husband can have a little off time tomorrow or some day very soon.  A friend is coming to visit soon, she wants to give Stuart a little time off….at least a few hours.  (thanks Linda).  I hope he will take it.

What bothers me the most about all of this.  Stuart was already exhausted, then he had to save me, and take a lot of time taking care of me, all because I was just dumb.

 

 

Endolymphatic Sac Surgery – Recovery Day 5

On By WendyIn Chronic Illness11 Comments
PAIN - by W. Holcombe

Today is about the same as yesterday.

Still can’t move my head without the world spinning.  I tried to ease myself up…first slowly into a sitting position, waiting a long time each time I raised a little more.  I thought I was at the point of sitting up, but boy was I wrong.

Dr. Kaylie said this kind of thing is possible, and to take more Valium.  From the people I’ve talked to who have had this surgery, I think it’s a bit more than possible, I’m thinking it’s pretty common.  The Valium helps a little, I can move my head a little bit, and don’t feel like I’m going to barf all the time…thank you to whoever invented Phenergan!  I’m glad to hear this will end, if I thought I had to live like this all the time, I think they would have to lock me away because I would go crazy.

Stuart and I have are handling things pretty well.  I’m less horrified by him having to help me with all my personal needs.  (I must say, I never realized I peed as much as I do, I knew I drank a lot, but wow!  You really notice it when you have to ask for help with it, you become acutely aware.)  My husband has such a wonderful attitude, and is so generous and compassionate.  It’s funny how we never seem to see the virtues other’s see in us.  Stuart does not see that he is a very good person!

My ear is draining now.  The swelling is less, I’m wondering if that’s why it wasn’t draining?  Too swollen?  The drainage is very bloody.  And I have to change the cotton in my ear about every hour.

My biggest challenge now is sleeping.  I have a very hard time falling asleep because when I close my eyes the world spins even more.  Finally, when I’m so exhausted I will drift off.  Waking is even harder on me.  Every time I wake up I feel worse.  The vertigo is worse, the pain is worse….

I sure hope this starts to level off soon.  At least to the point where I can get to the bathroom.

Wouldn’t it be a great Christmas present to have this surgery work, and have my vertigo greatly reduced?  (I hope I’ve recovered to a manageable state by then!)

I do so wish Stuart had some help.  He keeps getting mad at himself because he can’t get more done.  Taking care of me, looking for a job, cleaning the house, doing laundry, taking care of all meals, taking care of the pets…but he feels he’s not doing enough.

Yes, we need to get some things on eBay, the sooner the better, for Christmas.  (he has some very expensive Lego sets that could make someone very happy, and us a little more solvent.)  We also need to put the Honda up for sale.  That would help our finances a lot.  These things are important, but he can’t do it all.  Yes, he’s a super man, but he’s not Superman.  But you know, I can’t see Superman actually cooking and cleaning, or being a nurse maid.

I have been running a low grade fever, usually at night, but it’s not high enough to worry about.  I’m pretty sick of TV, and I can only look at the computer for so long.  Reading is alright, but again, I can’t do it for long.  Words just start running together.

Like now….

 

 

Why do I write? PFAM carnival

On By WendyIn Chronic Illness10 Comments

Sharon at Bed, Body, and Beyond is hosting the PFAM (Patients for a Moment) blog carnival this go round, and she asked, why do we write?  The carnival will be posted on December 7th, be sure to go by there and find out why other’s write, and what they write about.

Drawing Hands by M.C. Escher

I’m an artist, not a professional writer, I never really considered writing anything that was meant for others to read.  I kept a journal, off and on, for years.  Now and then, I still find little books with partially filled pages buried deep in a box, little segments of my life, meant for no one’s eyes but mine.

The first thing I wrote that was intended for other’s to hear (or read) was a poem I wrote the day my mother died.  This became the largest part of her eulogy.  A poem I still cherish to this day, it’s not professional, it’s not prize worthy, but it comes from my heart, and it helped me get through the first few hours of saying goodbye to my mom.

Memories of Mom and Me

I look around me and all I see,
brings back memories of mom and me.
The clouds in the sky; for hours we’d look,
picking out colors and shapes and books.
Oh, look there’s a snap bug – remember him?
a play thing for me and mom again
.A sea shell reminds me of a walk on the beach;
my diploma, a goal, she believed I could reach.
Let’s go to a movie – her favorite E. T.
then go to the park and swing with me.
An ice cream cone, a frog, a snake,
a Thanksgiving dinner we attempted to make.
All the things around me I see,
bring back memories of mom and me.
The people who loved her, I see in their eyes,
the love that she gave them was no surprise.
She had a heart as big as the world
and the soul of a little girl.
People who knew her will never forget,
because she affected everyone she met.
Reminders of my mom are easy to see,
for there are parts of her inside of me.

After that day, I filled many more journals with not just accounts of the day, but prose.  Still, only for my eyes, or to be shared by a very select few.

For years I’ve had health problems..too many to mention.  I wrote about this – privately.  Then a few years ago I found out I couldn’t eat gluten.  It appeared that this little ingredient in so many foods was one of the things making me sick.  I started learning a whole new way to eat, to cook, to shop, to talk to wait staff…ect.  I started a little blog to help me keep up with recipes, places I’d eaten, products I tried, all of my experiences being gluten-free.  At first it was private, I only wrote for my information.  Then I noticed other gluten-free blogs and thought others could benefit from the things I was learning…and that started me on a road to writing publicly.

My gluten-free blog was pretty popular, but I started having other health issues, and even found out I had another food intolerance.  Not only did I feel that the gluten-free blog no longer fulfilled what I needed, I didn’t think I could put as much time and effort into it.  So that blog had to change.

I started having more issues with Meniere’s Disease.  However, it wasn’t ruling my life…yet.  So I decided I wanted to start a blog about getting healthier.  Yes, I was going to take a year to focus on my health and fix things.  My body had other ideas, so 365 Days to a Healthier Me, changed to Picnic with Ants.

With this blog, I have thrived.  I started writing this blog to tell my story, living with chronic illnesses.  To get it all out before I exploded.  Then I found others who understood what I was going through.  I found support, and friendship, things I never expected to find, simply by writing about my life with all its struggles, dreams, hopes, milestones….

I found myself opening up and telling the nitty-gritty honest description of my emotions, and my diseases.  What my Meniere’s attacks are really like, how it feels to find that your husband is now your caregiver, how losing your hearing changes your life, how having chronic pelvic and hip pain affects your sex life, what it means to be bi-polar and (mostly) stable….I write about my life, and how I strive to live it to the fullest, with chronic illnesses.

I tell everything, in detail, not just to get it out, and find support or give support, I use it to explain to those who have no idea what we go through.  I have become an advocate for myself and for others with chronic issues.  I’m even considering writing a book detailing different people’s experiences living with an invisible illness.

There are many things I can no longer do because of my illnesses, one of the things I can do is write. Therefore, to put it very simply,
I write because I can!

Oh, What a Day!

On By WendyIn Chronic Illness7 Comments
by Wendy Holcombe (created on Photoshop)

Today was absolutely beautiful, and I woke up without a headache…(meaning a little bit of a headache, like normal, but no where near like I’ve been having lately…yes, I always have a headache, sometimes it’s just much, much worse than other days.)

The weather was gorgeous, in the low 70’s (F), with a slight breeze.  The leaves are starting to fall off the trees.  I took my lunch out on the back porch and enjoyed the sun and warmth.  There was a gust of wind and a flurry of leaves blew over head, it reminded me of a scene from Winnie the Pooh’s Blustery Day, however, my day was not that blustery.  I had a giggle.

We decided since I was having such a good day, we would go somewhere.  We went to the little mall near our place, and bought Stuart 2 new ties for him to wear to interviews.  They are a bit bold, and show more of his personality.  I think they show confidence!  I hope the people he interviews with also thinks so.  (today was Stuart’s last day of work, just a couple of hours really, turned in his computer and told them where he left off.  The owner said he felt so bad, but he had realized if they had one bad month they would be in trouble.  They have decided to put the project Stuart was working on, on hold…so no reason for Stuart to be there.  Stuart is so great about it.  I think it’s the Buddhist in him, I’m not as philosophical…but I’m trying.)

Today, we didn’t think too much about that!  We walked the mall, window shopping.  Then we needed to go by Wal-Mart to pick up a couple of things, yes, I don’t really like shopping at Wal-Mart either but it’s 1 mile from our house, so convenience sometimes wins.  Unfortunately, I really used up most my energy in the mall, and shouldn’t have gone to Wal-Mart.  We stayed there much longer than I should have.  By the time I got home, things were spinning a bit, especially if I moved my head too fast.  I bent down to feel the dog, and the world when Whoosh!  I’ve been lying down since then.

I had a great day!  Lived it to the fullest.  (yes, going to the store is living it up for me.)  However, I really need to learn where my cut off point is.  I push myself beyond my limit way too often.  If I feel good, I take advantage of it.  Hopefully, I won’t be paying for it tomorrow.

Right now, my hip hurts, my back hurts, my tail bone hurts, my head is starting to hurt (worse), and I’m very off-balance.  Think I over did it?  Yeah, me too.

So how do you learn what’s enough?  Often I don’t feel that tired, or hurt that much, until I stop.  Do you know what your limits are?

With the holidays coming up, I really need to figure this out.  Right now, I’m thinking, we won’t be going to any parties.  We may try to have a few people over to our house  We think it would be better in my controlled environment, I can go lie down if I need to.  Or I can get away from noise if I need to.

Thanks for any advice.

Think I’ll be posting more about how to handle the holidays soon.

Inspiration

On By WendyIn Chronic Illness, Disability5 Comments

I’m feeling better, at least emotionally, than I did during the last few posts.  Thanks to all for putting up with me, and showing me such great compassion.

(I have been in touch with my GYN to see about going back on the pill to see if it will help…we’ll see.)

Now, on to Inspiration.

I saw this beautiful poster on someone’s blog…sorry I can’t remember where.  So I wrote to the University of New Hampshire to see if they would mind of I printed it here.  They were so nice, and gave me their consent.

Disability is an Art

The University of New Hampshire has an Institute on Disability, this poster comes from there.  They have a lot of great resources, especially if you life in New Hampshire, but even if you don’t, it’s a good place to check out.

The quote by Neil Marcus touched me,

‘Disability is not a “Brave Struggle” or “Courage in the Face of Adversity”.  Disability is an Art.  It’s an ingenious way to live.’

How many of us feel this way?

How many times have you been told how brave you are?  How much courage you have?  Do we have a choice?

But the part that really touched me was “Disability is an Art”  –  Who would ever think that?  “It’s an ingenious way to live.”  Wow! what a statement!

Take the time to really think about that.  We are disabled, we are art.  We have an ingenious way to live.

How many people, including ourselves some times, pity us?  Think that we can’t live a fulfilled life?  This simply is not true.  Remember, we are a work of Art!  We have a life no one else does, but it’s ours.  It’s up to us to make the most of it.  Our life may not be what we expected, but it’s ours, and we have a choice on how to live it.

Another quote I saw recently:

“Have respect for yourself, and patience and compassion. With these, you can handle anything.” ~Jack Kornfield

I want to talk about more than just respect, patience, and compassion for ourselves, I want to talk about showing these to everyone.

My husband and I have talked a lot about how people just don’t seem to respect one another.  Just imagine, if we showed respect to everyone we met, and they showed respect to you.  This simple show of respect could over come nearly every obstacle.  No more road rage, no more bullying, no more yelling at customer service, no more wars (yes, I know that’s a big one, but if everyone respected one another, would there really be wars?)

Even when we respect other’s we often forget to respect ourselves.  To show patience and compassion to ourselves.  My doctors and friends have told me, many times, to “Give yourself a break.”  Finally I listened, and life isn’t as hard any more.  I don’t have to do everything.  I can ask for help.  I don’t have to feel guilty because I can’t do something.  I can handle anything.  The key word there is “handle”, no I may not be able to do everything by myself, but I can find a way to handle the situation.

Look at some of the things I can do:  I can make my husband smile, I can create a work of art, I can appreciate the world around me…I notice more now because I’m not in such a hurry.  I don’t get impatient if I have to wait at the store.  I realize that the person who is trying to help, usually isn’t the one at fault.  I notice all the people who keep our infrastructure running, people we just don’t pay that much attention to.  Like the sanitation crew…they work hard, in the heat, cold, rain, snow…. but do they get appreciated?  Usually, people just get annoyed with them because they have to drive around them, or they get mad because they were late picking up their garbage.  Our mail carrier, our pest control person, the road maintenance crew…they are working hard to keep our lives running smoothly…and often they are not respected, or appreciated.

The season of showing thanks and appreciation is fast approaching, but shouldn’t we be doing this all year-long?  A note on my garbage can saying, I appreciate you!  Can you imagine how much that would surprise someone?  I always wave at the road maintenance crew, and they always look surprised.  Once after a big storm that knocked out a lot of the power lines, I took out drinks and snacks for the crew in front of our house, just a little something to tell them, I appreciate you.  A soldier in an elevator, I simply said thank you, and I saw his face light up.

I’ve recently received cards, and gifts from people I’ve never met.  A thank you card for sending someone a cook book, that I was giving away.  A set of Walkie Talkies and a card from someone, just because I needed help, and they had something I could use.  A card from a friend who went to Disney World, simply because she knows I love Mickey.  And most recently a box of goodies from a fellow blogger, just to help me…and to show she was thinking of me.  these people will never know just how much these things have meant to me.  How they touched me at a time, I really needed it.  All of these things came from people I’ve only come to know through blogging.  What a wondrous time we live in, that I can make friends all over the world through this little box sitting on my lap.

When things seem their worst, and I want to just give up,  I realize just how many people are pulling for me.  How many people, look beyond my disability and appreciate me.

At times I forget these things.  The fear envelopes me, the guilt strangles me…but the love, respect, patience, and compassion that I have received from others makes me realize, I must give these to myself as well.  They nurture me, teach me to take better care of myself, give myself a break, and stand up for myself.  It proves to me that I am a work of ART!  My life is ingenious!

My point, that may have been lost somewhere in there:

Take the time to think if you showing yourself the respect, patience and compassion you are entitled to.  If not, make a conscious effort to be better about it.

I know I am.

I’m not alone….d*$& it!

On By WendyIn Chronic Illness5 Comments
I Am Not Alone. by Wendy Holcombe Nov. 2011

After posting about my attack on Wednesday, I had an outpouring of people who either commented on the post or emailed me personally to tell me I’m not alone.  As comforting as it is to know someone else understands, it’s heartbreaking that there are others who have to go through this too.

I really wish that no one could empathize with me.

One thing about my attacks recently, they don’t last as long as they used to….but it feels like they do.  I’ve had attacks last over 12 hours, the last one lasted over 3, the one before that was less than an hour, yet each felt as if they lasted for an eternity.

Angelea from A Day in the Life with Meniere’s said, “The only thing that keeps me hanging on through an attack is that, at least so far, they eventually end within 8-12 hours.”  I’m the opposite, every time I have an attack, I’m terrified it won’t end.  I know it always has…but what if this time it doesn’t….it’s unimaginable, yet…it fills me with terror.  I’ve read of people having vertigo for extended periods of time.  Weeks, months, years… indefinitely.  Do they always feel like I do during an attack?  How do they live?  Or are they using the word vertigo loosely?  I know it varies in intensity, but all I can think of is the terrifying sensations I get.

Most people who write about their attacks, don’t go into the detail I have.   We all know they are horrible, but somehow I wished for my friends that it wasn’t as bad for them.   I was even a bit surprised when I heard how much so many of you could relate to everything that was happening to me.  (I really wish you couldn’t).  We hear each other say, I had a bad attack complete with throwing up for hours….but we normally don’t talk about the rest.  Thank you all for sharing your stories with me.  People (especially our doctors) really need to understand the torture we go through.  I keep wondering if these specialist we see have ever seen an attack.   Do they just know what they’ve read, or have they ever experienced anything like it?  Or seen a loved one go through it?  (I plan to ask my doctor the next time I see him.)

I emailed my doctors.  I heard from Dr. Gray already, and unfortunately she is also thinks that although I’ve had some good results with the patching, the results to not stay sustained, and this does not look to be a long-term solution.  That was hard to hear, even though I already knew it in my heart.  We’re waiting to see what Dr. Kaylie thinks my next move should be.  I had good success from the endolymphatic sac surgery on my right ear.  I’m almost positive that the majority, if not all, of my attacks since I had the surgery have been from my left ear.  So that is a consideration.  It’s a rough surgery, and recovery is hard.  From what I’ve heard from two other friends their recovery was much worse than mine.  So I do know there is a chance that it could be worse next time.   However, I haven’t talked to Dr. Kaylie yet, we’ll discuss my options and see what happens.

I’m so confused by all of this though.  I’m not sure if we’ll discontinue trying to keep my cerebrospinal fluid regulated.  I would think that we’d need to do this.  So many questions.

Again, I’m going into this bad time just as the holidays approach.  Last year, I had to wait from early November to late January before I had my second set of patches.  That was some of my darkest time.

I say so often, that I accept this illness, it is a part of me.  But I think a lot of that is what I want to believe.  Today, I broke down and just screamed…”I DON’T WANT THIS TO BE HAPPENING TO ME ANY MORE!”  I thought it was better.  If I could have seen this future in January, I would have spent those months symptom free so differently.  I tried to get my life back, to start a future.  I spent 30 class hours plus many, many hours outside of class, working to become a foster parent.  I started a garden.  I bought a car.  I bought hearing aids.  My life was all falling into place….then it came crashing down.

Now I look back.  If I had known all that I was doing was wasting time.  We won’t be able to foster.  The garden died.  I now have a car I may never be able to drive, and I have a hearing aid that sits in a box because my hearing has deteriorated so much in that ear it’s useless.  ($2000 for 3 months of use, I don’t think that’s a very good bargain.)

So if I could have peeked into the future, I would have told myself to live every symptom free day to the fullest.  Travel.  Spend as much time with friends as possible.  Go, and do the things you can!  Don’t waste a day!  And most of all, don’t plan for the future!

So yeah, I guess today I’m having a pity party.

I keep thinking in January, before the patches, I was contemplating suicide.  I can’t go back to that.  I just can’t.  But if I get to the point where I’m having the horrific attacks multiple times a week…often every day…I can’t say that I won’t fall back into that deep dark hole.

No this disease is not me, I do accept that it is part of me….but when it takes over my life and becomes all of me, that, I can’t accept.

I know, I’m jumping the gun a bit, and have some major issues with regrets right now.  I haven’t given up, and I’ll keep fighting for me.  I’m not fighting the illness (as in not accepting it), but I am fighting for my life.  For some balance.  For some relief.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J, and NaBloPoMo.

Am I a Patient?

On By WendyIn Chronic Illness, Meniere's Disease8 Comments

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?