Tag: Pain

Dark Days…I’m having a rough time…and a request.

On By WendyIn Chronic Illness17 Comments
Darkness and Disequilibrium Envelope Me

I’ve started a number of posts lately and haven’t finished any.

I’m having a rough time lately.  I feel the darkness creeping over me, sucking the hope out of me.  I’ve had this happen before, and I always pull myself out of it, but it’s hard.  Right now, I just wish I wasn’t.  (Don’t worry I’m not suicidal.)  Sometimes, I just wish, I didn’t exist.

We watched It’s a Wonderful Life on Christmas, one of the only true traditions we have.  We usually watch it on Christmas Eve, but we had a friend come over on Christmas day and we like to watch it together.

This movie usually gives me hope.  It makes me believe that I could have made a difference and not known it.  Just maybe I’m important in some way, that some things would be worse if I hadn’t been born. This year part of this movie hit hard.  One of the last parts of this movie made me so very sad.  Clarence, the angel, leaves a book for George Bailey and in it he writes, “Dear George, remember no man is a failure who has friends…..”  George was surrounded by people who loved him, who he had helped in so many ways that they were all willing to help him, without even knowing what caused his troubles.  (if you haven’t seen the film, George finds himself in a huge mess and considers suicide.  Clarence, shows him what life would have been like if he hadn’t existed.  It was a pretty grim picture.  After he sees this, he wants to live, then he finds out that his friends all want to help him.)

I have been feeling I have a lack of true friends lately.  Friends I can really call on.  I know I have a few.  However, not that many. Does that make me a failure?

I’ve had a couple of friends this year tell me I haven’t been a good friend.  That I’ve ignored them and haven’t worked on our friendship.  That was very hard to hear.  Especially from one of them.  I felt I’d been there for her over and over, we had been friends for years and years.  (though not always in touch)  All of a sudden, she felt she was giving all the energy in the relationship and I wasn’t giving anything.  I think my illness, and my depression about it sometimes scared her.  But I don’t think that was all.  We are back in touch, but it’s not the same.  The incident has never been mentioned.  The other, I could understand how she could see things that way.  But it was never intentional.  And now, I feel odd about our friendship, and don’t know if it will survive.

I’m lonely, but I have a hard time being around some people.  Losing my hearing is hard.  Often, I’d rather be lonely alone, than in a room with people whom I feel isolated from because I can’t hear them.  I do well one on one, but in groups…it’s so hard.  I’m also having a rough time with envy.  I want to be happy for my friends, and experience joy that they can do so many of the things I can’t.  Sometimes I can do this, other times it just eats me up.

There are so many things that I’ve been having a hard time with.

I was reading back over my blog from this year, and my journal from last year, and found I’ve been on a sickness merry-go-round that goes something like this….hell – much better – hell – much better….over and over.  I’ve been given hope and felt better and then had the rug pulled out from under me so many times I’m dizzy just thinking about it.  (pun not really intended, perhaps I should say, dizzier?)

I keep thinking, even if this surgery ends up working, when will it stop.  Will I have 2 months…4…12???  (Dr. Kaylie said to give it 3 months before we really judge it.  This really takes a long time to heal.)  When I had this on the other ear, I had 4 months vertigo free, then I had a spell of 11 days with a Meniere’s attack.  Hearing down, tinnitus up, and vertigo on and off…for 11 Days!  But caused by the other ear.  Then I started in the Cerebrospinal fluid study, and things have been up and down since then.  For over a year.

In the past 2 years I’ve had 9 decent months.  Not a bad number, but they weren’t great of course, I’m just talking 9 months where the Meniere’s was better.  5 months where the headaches were better.  And very, very few where my GI system was better.  I even had a few where the pelvic and hip pain were better, but not many.

Speaking of GI issues.  I’m still having diarrhea very often, and have gained so much weight.  I’m not keeping much food in me, almost every time I eat I’m running to the bathroom.  Yet, I’ve gone from 147 lbs in the beginning of 2010, to almost 200 lbs. now.  (and most of that I gained in 2 months time, in the fall of 2010)  I hate to look at myself, and the idea of people seeing me like this, or having my picture taken terrifies me.  I grew up in a house where my father would often tell me I needed to lose weight, and would talk about others who were, what he considered, over weight.    I knew even if he didn’t say it to my face, he would be calling me fat behind my back.  (this caused a teen eating disorder)  I haven’t seen him in long time, and won’t now.  The idea of it, just hurts, I could not bear the thought of being told I’m fat, or knowing he would be telling others how fat I am.  (BTW, this is not a man who has been in shape for as long as I can remember.)

So to sum that up, I do not have the Fructose Malabsorption under control.  Elimination Diet started today!

We watched Despicable Me on Christmas Eve.  One of our favorite movies.  I think this was the 4th time we’ve seen it, and still laugh so hard.  But it also makes me cry.  This time more than usual.  When he falls in love with those girls, and they become a family, it’s so touching.  All I could think about was the fact that earlier this year we were making plans to become foster parents.  Now we’ve given that dream up.

I’m still stuck in bed most of the time.  When I get up I get the worst headaches!  Also, I feel like I’m on a very rocky boat most of the time.  It’s horrible.  I’ve felt unsteady for a long time, but now, I walk a bit like I’m drunk.  I have to walk very slowly.  To top it off, I feel sea sick.  Strangest thing about that – the only time I’m not feeling nauseous is when I’m eating.  (is that weird or what?)

This is also a difficult time for me because my mother’s birthday was New Year’s day.  It was such a special time when she was alive.  No matter where I was, at some night club, or party, or what ever….as soon after midnight as I could I would call my mom and wish her a happy birthday!  I remember one year I was at a bon-fire, and I had to drive about 10 miles to find a phone so I could call her.  Now, most years, when midnight strikes, I’m just home.  Stuart often doesn’t even make it to mid-night.  He doesn’t like to be on the road on New Year’s Eve because of all the drunks.  I understand, but it’s hard on me.  He promised last year, this year we would do something special.  We were going to check into a hotel, party in their and we wouldn’t have to drive anywhere that night.  Perfect.  But, as you can probably guess, we can’t do that.  Plus, I’d probably be miserable because of my hearing troubles.  So what to do?

I don’t like it when I get like this.  (I logically know part of it is PMS, and I will pull myself out of it, but it’s a rough time.)

I’m certain I can deal with whatever the future has in store for me, but right now, I hope it doesn’t throw me another curve ball too soon.   I need to catch my breath, and renew my outlook.

Now for the request.

As I’ve mentioned on here, I started a goal list for the Day Zero Project.  You list 101 things to do in 1001 days.  I have one thing on my list that should be easy, but it hasn’t been, and I was hoping you guys could help.

#26 on my list is to Make a list of 20 things that I like about myself and stick it to my mirror.  (to be read every day)

I’d like to change that to Make a list of 20 things others like about me and stick it to my mirror.

Can you help?  Can you tell me something you like about me?  Not only will it help me check something off my list, I think it would help me during this dark time to hear some good things about me.

thank you all.

What I miss the most…Caution this post is probably WAY to much information!

On By WendyIn Chronic Illness27 Comments
My Moto.

I like to think I have a good grasp on things as they are.  I appreciate the little things, and change my expectations of life as things change.  I try hard not to wallow, or whine, or really miss things I can no longer do.  (most things I simply do a different way, or I find something else)  Point being I try very hard NOT to dwell on the past.  Not to say I don’t have my pity parties, but they don’t usually last long, and I can usually pick myself up pretty quickly.

There is one thing that I miss so very much, and no matter how creative I get, or how much my husband tries, it’sjust not the same.

photo courtesy of dreamstime.com free images.

I miss SEX!  That wild, abandon…a night of Passion, sweat, hormones, and sweet, sweet afterglow.    The night before last I had a dream…oh what a dream!  And when I woke up, I was so sad, and heartbroken that this may never happen again, except in those fleeting dreams.  (there is always hope though)

Caution, this is the part where I’ll probably tell way too much information.

There is a series of complications behind our lack…or rather, creative, sex life.

For a while there, I couldn’t have sex without having vertigo.  The Meniere’s was just taking over every aspect of my life.  But it’s not this illness that causes most of the trouble.

I have chronic pelvic pain, and hip pain.  And so far the doctors I’ve seen don’t really know why, or how to fix it.  They can’t figure out if the pelvic issues caused the hip (and tailbone) pain, or visa versa.

Caution again: Explicit description of my pelvic pain issues coming.

All of the major causes of pelvic pain have been ruled out…. vulvodynia, endometriosis, fibroids….ect.

I have muscular issues.  Vague I know.  Within a woman without this problem when she gets excited the muscles in her vagina contract a bit, it’s pleasant, it starts all the juices flowing and you are getting ready…they continue to spasm a bit…in a nice way, until it builds to an orgasm, the muscles spasm, and it feels oh so good.  This is what naturally happens to most women.

For me, when I start to get excited, the muscles spasm way too much, and it’s painful.  At first just a bit of stinging and uncomofortableness, but even a very passionate kiss, the kind you can suddenly feel in your loins. (I hope you know the kind.) Could cause me to have horrible spasms.  Foreplay, oral sex…oh the pain.   During actual intercourse, the muscles are stretched, and it hurts less…actually it’s much more enjoyable than any the rest.  Most of the time, when I have an orgasm it is intensely painful.  I’m talking, want to throw my husband off of me, scream in pain and curl up in the fetal position.  Needless to say, I got to the point where I was simply too afraid of this pain, and the emotional turmoil afterward to have any desire to try to have sex.

If this wasn’t enough, now I also have hip pain, so the part that I could enjoy is extremely painful, just in a different area.  When having sex, in the missionary position, the pressure from the man on my hip is excruciating.  Yes, we’ve gotten creative, I can keep one leg straight sometimes, or we he can enter from behind.  (but you know, that position, every single time simply gets old.)

For the vaginal issues, I’ve been to a number of specialist.  I’ve had biofeedback (yes they insert a probe inside and read the muscle contractions and you try to learn to release them, I even had one to take home an practice with.  But when the extreme spasms only happen when I’m excited, this didn’t work very well.).  I’ve had numbing shots in my vagina…that was horrific!  I’ve had special internal physical therapy.  Muscle relaxers…numbing creams…ect…ect…

Some of these worked, to a point, but only for a while, for some reason they would stop working.  None of them took all the pain away.

For the hip issues, I’ve had 2 Arthroscopic surgeries, correcting a torn labrum.  It didn’t help.  I was seeing one of the top hip specialist in the country, and after the second surgery, and I was still in pain, he did an MRI to make sure nothing was left inside me during surgery…yes this made me feel very confident in my surgeon.  Then he called me and told me that he didn’t see anything and he saw no reason for me to come back.  “Yes, he CALLED to tell me this!”  I was so stunned.  He gave me no hope at all, I’d have to live with it.

I asked around to people who had orthopedic troubles to see what doctor they could recommend.  A friend had a very torn up ankle, she is an athlete, and saw a Dr. Jones who made her better than before!  (her words)  So I called his office.  He wanted to see my records and scans, before I came in to see him.  He called and told me that hips weren’t his specialty, and after viewing my information he felt another doctor would be able to help me more.  A different Dr. Jones.  I admired this doctor I’d never met more than I ever did my first surgeon.  He looked over my records and films and knew to recommend me to someone with more expertise in this area, and he never charged me a cent.

My new Dr. Jones, sent me to aqua-therapy, and medical massage.  I did wonderfully, I started to feel so much better  (it didn’t help the pelvic pain, but my hip felt much better)….then I had to move to the gym and harder exercises, all the pain came back in a flood.  Dr. Jones was at a loss.  All my films showed a little of this and a little of that, but nothing that he could just go in and fix and make it better.  I have a little bit of hip displaysia…my IT band is too tight, my Psoas is too tight….but he said I can’t stay in PT and massage for ever.  (I thought…why not if it keeps me off out of surgery…but alas insurance wouldn’t pay for it.)  By this time, the Meniere’s was demanding all my attention.  Dr. Jones thought he could go in and really look to see what was going on, and possibly “release” some of the tension from my IT band and Psoas.  But we decided to put this off until I could get the Meniere’s under control.  He did prescribe me a ‘drug’ called Limbrel, for the inflammation, I put the word drug in quotes because it’s actually a pharmaceutical food supplement, not a drug per se.  I can’t take anti-inflamatories because of stomach issues, and I’m very allergic to Celebrex!  It has helped, he also has me on pain killers for the exceptionally rough days.  Bad News….my other hip has started giving me the same issues.  I haven’t had this looked at yet.

I decided to start seeing a massage therapist on a regular basis and she has really helped my hip.  I can walk without a cane!  And the day to day pain is much better.  But it still hurts to have sex.

When I was younger, I was … how shall I say this …frankly…very sexually active.   Much more than I actually should have been, but untreated bipolar can lead to not the best decisions, and I was dealing with a lot of other issues surrounding sex.  But we won’t get in to all that.

Let’s just say, with the right partner, sex was very passionate, experimental, and one of the most pleasurable things I’ve ever experienced.

When I first started seeing Stuart we had a very active sex life….Whew, when I think of that, my mind spins.  (in a good way!)  The pelvic pain had started, but it was mild and I could deal with it.  It didn’t really bother me, it was actually kind of pleasurable.  Not to say, I love pain, but it was mainly just noticing extra muscle spasms.  Then it got worse, and worse, and I started avoiding sex.  I was afraid.  It was very traumatic, I actually told Stuart to go find it somewhere else.  I’d still be here, and still love him, but it wasn’t fair that he was being forced to be celibate because of me.   He didn’t like that idea at all, and needless to say, we worked through it.  He admits he never thought he’d feel this way about someone, but sex is not that important.  It’d be nice if it could be the way it was, but it’s secondary.

I agree, but …. Dang it all I want it like it was, I miss it, and I need it!!  I remember in the dream the other night, I whispered in his ear, “Sometimes I want you so bad it hurts.”  It’s that ironic or what?

During the special PT, we found that stretching the muscles helps.  But I could not get into it, when we had to stretch those muscles right before we could have sex.  Talk about no spontaneity.  And I felt like it was too medical.   We tried to make it more, fun, but I felt inadequate that we had to go through this, and hope it worked.

Then we found a vibrator could really help.  Not only could we stretch with it, and it was pleasurable to me, the vibrations calmed the muscles down and I could have an orgasm with minimal and sometimes no pain.  But that’s not sex.  (If anyone out there has pelvic pain and thinks this may help, please email me and I’ll tell you one of the best tools you can buy…it has saved me.)  Sometimes, we can play with it for a while, then have intercourse…but the hip pain is still there.  (Damn, can’t I get a break?)

Playing with just the vibrator and having mutual masterbation was fun at first, but I really, really miss just wild sex.  Getting all hot and heavy, and throwing one another down and getting to it!  (even if I didn’t have this problem, I think I’d have to get in better shape before I could have sex like I really want…but it’d be so much fun trying.)

In my dream, we had just met, and were so sexually attracted, we played “the game”, you know that flirting that you know is going to lead to more…and it was HOT.  Then I woke up in pain.  Yes, it even hurts to have a sexy dream.

I know my husband loves me, and still finds me very sexually attractive.  He makes me feel desirable.  But it’s so hard.  I want the build-up…the game…romance.  But that hurts.  Often, when Stuart does little things to show he still thinks I’m hot, like giving me one of those kisses, or “accidentally” brushing my breast, or grabbing my butt in the grocery store…it hurts me. Literally, hurts me.  It causes physical pain, and breaks my heart.  (but mentally, I need this from him, so it’s worth it, I need to know he doesn’t see me as just a patient, that he sees me as a sex pot, like he used to.)

So even when we want to fool around with the help from the vibrator, it has to be sudden.  Jump right to it.  No build up…or PAIN.

I hope when the Meniere’s stops controlling my life…notice I say when and not if!  I do believe it will get more manageable.  Any way, when Mr. Meniere’s lets go of his grip on me, I plan to go to the UNC Pelvic Pain Center.  They are supposed to be able to perform miracles.  Not that I expect any, but I’m very willing to give it a try.

All I know is…I want SEX!!  Really, good wild monkey love kind of sex!!

image from cafepress.com

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.

 

 

Day 8 – Much better than yesterday!!

On By WendyIn Chronic Illness7 Comments

Today I can get up and go to the bathroom on my own!!!  Well, with a little help, and it wears me out every time…but walking those 10 feet is a great milestone after being stuck in bed for a week.  To go from not being able to lift my head, to being able to walk those 10 steps to the toilet…what joy!

With Stuart’s help, we even brushed my hair today.  I do believe a little family of mice were about to move in, they’d already made big nest!  Thank you to whoever, invented the detangling spray..  Perhaps, Johnson and Johnson – No More Tears detangler…I have an off brand, but still no tears!  It did wonders.  The mice will not want to take up residence now!

The pain is minor to moderate, depending on the time.  The headaches are still there, sometimes much worse than others.  Pain medication or Maxalt seems to be helping with those.  I’m still seeing blood from my ear, but nothing yellow, and it appears my temperature has returned to normal!

I really didn’t expect to have such strides so fast, but I’m thrilled that I was wrong.  I know, I may have some set-backs.  Especially since the feeling in my ear still isn’t completely back.  Let’s hope that the severe vertigo stays away!  (we even got my ear ring back in.  I thought I wouldn’t see that ear ring back in.  When I turned 35 I had my upper ear pierced, sill I know, but it meant a lot to me.  So we took advantage of my ear still being a bit numb and put it back in!)

To close…a drawing I colored last night/today.

Christmas Tree - by w. Holcombe

 

…Welcome Christmas bring your cheer
Fahoo fores dahoo dores
Welcome all Whos far and near….  
                                                                                                                                                                           
an excerpt from Dr. Seuss’ “Welcome Christmas Song”
Happy Holidays to all my friends – far and near.

 

 

 

 

 

 

 

 

 

 

 

One week after surgery… So, recovery day 7.

On By WendyIn Chronic Illness7 Comments
ReCOVERY - w. holcombe

I must say, if I didn’t know other’s who have been through this just as bad as I’m going through it now, I would be VERY discouraged.

I’m nauseous most of the time, I still can’t lift my head, can’t get out of bed…every day I think…well, this is the worst day so far.

I’m anxiously waiting for a day when I think….Oh this isn’t as bad as yesterday!

The pain in my ear has increased, can someone please remove the ice pick that is being jabbed in my ear!

I’m also having intense pain down my neck, I can’t open my mouth as wide as I should, the whole left side of my throat hurts ….  You know, I feel like I have the mumps, on just the left side.

I’m grateful that the worst of the pain is a sharp pain that doesn’t last very long.  The aching pain in my ear, is always there, but it’s not nearly as bad as the “Out of the Blue, Slam me in the Head” type of pain.

My fever seems to be less than it was, but I’m still achy all over, and the swelling is almost gone.  (see there is some good news!)

My ear still isn’t draining like it did the first time, but it is still bleeding a bit.  Not a lot, but ick, blood coming out of your ear…need I say more?

So why is it that whenever I’m sick, things always get worse at night?  I run a higher temperature, the pain is more intense…  Stuart thinks it’s so very odd, but I remember as a child, whenever I was sick, I would always be worse at night.  Is this strange, or do other’s have this happen too?  Is there a reason for it?

I think that’s about it.  I’m sad that this recovery is so taxing.  I’ve mentioned before, when I close my eyes the vertigo gets more intense.  It’s so very, very hard to fall asleep, or to sleep well.  I am completely exhausted.

While I’m awake it’s a bit easier to deal with, but when I’m asleep, I’ll start to roll over, and Whoosh! goes the Vertigo (yes, you must say that to the tune of Pop! Goes the Weasel!)

Perhaps tomorrow will be a …. “this isn’t as bad as yesterday” – day!

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….

 

 

Recovery Day 4

On By WendyIn Chronic Illness15 Comments

This has been the worst day yet.

Wendy with Headache and Vertigo - photo and manipulation by W. Holcombe

I knew it could be this bad, I’ve talked to many who had a very rough time with recovery from this surgery.  But I had it before, so I thought my recovery would be about the same as the first time.  Much pain, but not so much vertigo.  Boy was I wrong!

If I move my head at all the world spins, very violently.  This vertigo isn’t like most attacks, it will be calm, if I keep my head still.  I can’t lift my head, I can’t turn my head, I can’t sit up, I can’t get out of bed to the bathroom…that’s right I said I can’t walk the 10 steps it would take for me to get to the toilet.  I’m very lucky that my husband is so very supportive, and is not squeamish.

(caution for those of you who get grossed out…do not read this if you do.)

To be very blunt, you spouse should not have to empty your bed pan, or clean you up afterward, especially when your tummy has not been happy. To add insult to injury, I started my period yesterday.  You cannot imagine how hard it has been on me to need my husband to help me with female sanitary issues.

The pain is better at times, and much worse at times.  I keep getting very sharp pains through my ear.  And I’m pretty sure the feeling is coming back in the ear itself, so the cartilage pain is beginning.  The headaches, have been many, and harsh.  Other times, I feel very little pain at all.

The swelling is MUCH better.

I have a call into Dr. Kaylie, unfortunately he wasn’t in the clinic today.  Stuart has talked to another doctor, and they feel certain this is just one of those things that can happen.  I’m not running a fever, the site is not red or hot.  So we are not worried about infection.  I keep thinking, if Dr. Kaylie said he wants to see me, how would I get there?  There is no way I could get up, get dressed, go down the stairs, and terror of terrors ride in a car!

I had a tiny bit of drainage today.  I still feel, if the ear would drain, things would get better.  It appears my tube is either clogged or fell out.  But even if it fell out, I would think the hole would still be open a bit.  I know it was open the day of surgery, I closed my nose and blew air out the hole just to check.  I admit, I was a bit scared of going through this without a drainage hole in my ear.  Every person I’ve spoken to who had a rough time of this, did not have a tube.  I was convinced that was the reason I didn’t have vertigo before.  The fluid did not build up.

Here’s to a better tomorrow, and many days vertigo free.

I told you that you may get tired of these posts, I want to make sure to keep up with all the details of my recovery.  As confused as I get right now, I want to make sure if a doctor asks me anything about this, I have a reference.

(sorry about 2 posts coming out today, I had the post for the PFAM carnival written before the surgery.  Just had to proof read it.  Not sure I did the best job of that, considering.  However, it’s due today, so I thought I should post it too.)

Now, I will get off of here before I over do it!

Surgery Over – Day 1 recovery

On By WendyIn Chronic Illness14 Comments
Getting ready to go home, after a long day!

Surgery went well.  I had an Endolymphatic Sac Enhancement Surgery.  After much searching, I found that different doctors do different surgeries and call it the same thing.  Basically had a Mastoidectomy.  (surgical removal of the mastoid process) with extra stuff.  Dr. Kaylie removes more bone so the sac can decompress (on its own) and will have more room to expand.  Leaving the endolymphatic sac and dura with no bone covering it.  However, most of this is under your ear, so it’s pretty protected.

Hopefully, this surgery will stop 70% – 90% of the vertigo caused by this ear.  I had this surgery on my right ear in April of 2010, it appeared to work.  But since I’m bilateral, sometimes it was hard to tell if my vertigo attacks were caused by my right or left ear.  Sometimes I could really tell, but since my hearing has diminished so much, and the tinnitus has gotten so much worse all the time, it makes it harder to distinguish.

I got home about 7:30pm.  Had to be at the hospital at 11:30am, surgery was to begin at 2pm, but it was delayed  until after 3pm because they had to give me a pregnancy test.  I told them there was no way I was pregnant even explained that because of my hip issues, we haven’t had “intercourse” in a very long time.  They asked again, how I could be sure I wasn’t pregnant.  I told them, “let me put it this way, there has not been a penis in my body for months, because of my hip pain, we get creative, but we haven’t had intercourse.  And I haven’t skipped my period.”  (they considered giving me a test anyway, but I peed right before they took me back, and since I hadn’t drunk anything for about 14 hours, there wasn’t any to come out.)  The nurses accepted this, but come to find out, if you are of child-bearing years you must have this test, hospital policy.  So I squeezed out some urine for them….and we waited….and waited for the lab to do the test.  So that delayed the surgery, luckily I was his last for the day so it didn’t put anyone behind.

When they decided I just had to have this test, Stuart joked, “Well, if you are giving birth to the messiah we want to make sure we don’t cause him to have birth defects.”  Only, Stuart would come up with that one!

Before leaving the hospital they did have my pain under control, but I was hurting quite a bit shortly after we got home.  I was sick to my stomach, (lot’s of anti-nausea medication), and pretty dizzy.  I slept some, but I woke a lot because of the pain.  I don’t think I took enough pain medication until about 4am.  Finally, it started to work.  I’d wake up in a few hours, and take half of a pain pill, this seems to have kept things under control.  One thing that was odd, I had this horrible taste in my mouth I just couldn’t get rid of.  Tasted like plastic and medicine.  I swear I tasted that same taste as they were putting me under.  I don’t remember this ever happening before.  It was gross.  I’m also having some crazy post nasal drip, and a cough.  Of course, my throat is sore from the breathing tube, but it’s better today too.

That big cup they put on my ear, filled with gauze and stuff, I swear it causes more pain than the actual surgery.  There was too much gauze and it pressed on my ear.  When you have a hole drilled in your head about the size of a 50 cent piece, you don’t really want to feel something pressing on it.  Thankfully, we got to take it off today, I removed all the stuff from inside, ewww, and just put a little packing back in, now it feels better, and I can sleep with out the worry of rolling over on that ear.  They said I could just take it off, but the ear will drain for some time.

I have a tube in that ear, so the drainage comes out the ear a lot.  This is actually an advantage.  My Eustachian tube is very sore, so I know it’s handling a lot of drainage too.  If I didn’t have the tube I think I’d have a much harder time with vertigo and pain.

My main nurse during pre-op, Janice, was amazing.  She was so caring, compassionate, and professional all at the same time.  She looked pained to hear what I had been going through.  I told her one of my mottos, “Life isn’t what I expected, so I’m just changing my expectations”.  I didn’t say this to be profound our anything, I said it to let her know, I’m OK with things.  Yeah, it’s hard, not what I expected, but I’ll make the most of what I have.  She was really stuck by this.  She said everyone could learn from that, so many people get caught up in the what if’s and can’t get past it to see what they still can be.  Right before I went back, she patted me on the arm, wished me the best, and said that she was going to remember to change her expectations as things change.

I was so humbled, and touched.

They had a hard time getting in an IV, one nurse tried, and even though she gave me lidocaine, it really hurt and it wouldn’t go all the way in.  Janice came in and took over, she had a hard time finding a vein, I remember telling her, I wished I could help.  She told me I was such a good patient.  She soon found a vein, and I didn’t even feel her stick me!  Amazing.   (about IV’s, I had another one in my other arm when I work from the surgery…wonder why?  I’m very glad I was out for that one, it was inside my wrist, a very painful place to get an IV.)

Everyone was very nice to me, and very professional, but Janice was exceptional.

Now, I’m getting tired, and a bit nauseous.  I’m thinking all this drainage, and post nasal drip, is making me sick to my stomach.

think I will take a nap.

For now, all is well…I may be posting a lot during my recovery.  I want to keep up with all my symptoms, so I may get a bit boring.  I thought of keeping a written journal of it, or on my calendar, but I know I’m much more likely to come here, and talk.

Thank you all for so much support!  You cannot imagine how much it means to me.

Helping Symptoms with Hypnosis

On By WendyIn Chronic Illness13 Comments
Hypnotic Healing by Judith Westerfield - image stolen from her website.

I asked my friend Judy from Creativity to the Max if she thought some of her Hypnotic Healing CD’s could help me calm down during an attack.  I’ve been trying chanting and visualization techniques, which seemed to help a little, but I wanted more!!  : )

To give a little background, so you don’t think I just asked some quack about hypnosis tapes.  Judith Westerfield is a licensed Marriage, Family Therapist, and Certified Clinical Hypnosis and Guide Imagery Therapist.  You can read more about her here: http://judithwesterfield.wordpress.com/judy-judith/

She was kind enough to send me 3 CD’s to see if they would work for me.  I’m very pleased to say they help a lot.  Whenever I start to feel the anxiety building, and the fear that an attack is imminent, I take my meds, and hook my hearing aid up to the computer so I can hear Judith’s CD’s.

Since I started doing this, my attacks have been much milder, even on the day last week when I was spinning, full out rotational vertigo watching the room just spin.  It wasn’t as bad.  I didn’t even throw up, a miracle in itself.  I don’t know if the not throwing up part can be contributed to the CD, we were pumping in a lot of Phenergan, but I know the CD really helped me stay calm, focused, and relaxed.  Yes, I said relaxed.  (as relaxed as you can be with the world moving all around you.  But I have to say, I was more relaxed than I have been during a vertigo attack.)

The three CD’s she sent were Healing Your Body – Healing Waters, Heart to Heart with Love, and How to Listen so your Symptoms will Talk – How to Talk so your Symptoms will Listen.  I have found the Body, and Love CD’s to be invaluable.   I’m having trouble talking with my symptoms, I think deep inside, I don’t want to talk to or listen to them.  I just want them to go away, and I know they won’t so I don’t want to talk to them   I think of them more like an unwanted guest you just ignore so they will go away.  I need to work on that.

My favorite is Healing Your Body – Healing Waters.  I love to use water as a relaxation guide.  Another of my dearest friends would say it’s because my astrological sign is Cancer, a water sign.  I can just hear her, “Of course, you need water around you!  Let it feed your soul, you need it.”  (I love you Kym)  The sound of water makes me feel tranquil.  I’m simply more at peace when I’m close to water.  So having a visual guide that centers around water, has been very helpful for me.   The Heart to Heart with Love CD, is helping me learn more compassion for myself and others.  I need to love myself, as I do others.  I can’t continue to criticize myself for being ill, and not being able to do things.  I would never allow anyone to say those things about a friend of mine, why would I tolerate me saying it about myself?

The CD’s are meant to be listened to often, in a quiet place, a type of meditative feel.  I do this, but I also just have them on listening when I’m on the computer and or reading.  Even when I’m not concentrating on the words, the calm, soothing nature of the CD reduces my anxiety, and creates an all over sense of well-being.

I talked to my therapist about these, and she thinks they are wonderful.  She has made hypnotic recordings for some of her patients, and is thrilled I’m using this as a tool to help with my anxiety, and be more at ease with my symptoms.

I’ve been looking over the CD’s Judith offers and I want so many of them!  I especially want Healing your Mind, Pain Relief; Transforming Stress and Anxiety into Calm and Comfort, Weight Control, and I really wish I had the Preparing for Surgery CD right now, but my surgery date was scheduled so fast I couldn’t order it and get it in time.  Judith also creates personal CD’s focusing on your own special needs and using your own focal imagery.  I’m seriously thinking about getting her to create one for me.

I’ve listened to some recording that were supposed to heal through self-hypnosis, but they didn’t really work.  I don’t know if it was my mindset at the time, the voice of the person recording it, or if they were just junk.  So, I had my doubts about how well these would work.  I’m very pleasantly surprised.

For more information on Hypnosis and Interactive Guided Imagery(sm) see Judith’s web-site:

www.HypnosistotheMax.com

Yes, I still  have vertigo, I still have symptoms, but finding aids like this have made it easier to deal with them.

As everyone with Meniere’s knows, we may not have attacks every day, but we live with it every day.  Some days the symptoms may be minimal, but the fear is always there, the unknowing….when will it happen next.  Will I be home and safe?  Will I be driving?  Will I fall and get hurt?  Will I be in a crowded area?  How bad with the next attack be?

We live with PTSD (Post Tramatic Stress Disorder).  I have one doctor that describes what we go through as being on the front lines during war.  Soliders knows they will be under fire, at some point, but they never know when.   This is a disease of Random Punishment.  We have to use all the tools we have to keep ourselves sane, and safe.

I found these CD’s and Toni Bernhard’s book How to Be Sick a great help.  They both address my issues, and help me accept and control the situation.  I don’t feel as out of control.  I may not be able to control an attack, but I can control my life around them.  I don’t have to live shell-shocked all the time.

Have you found anything that works for you?  Anything that makes coping with your illness easier?

Please share, we all need to find our “happy place” or at least a happier place some times.  We can all use some help getting there sometimes too.

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.