Tag: migraines

Endolymphatic Sac Surgery – Recovery Day 2 – 3

On By WendyIn Chronic Illness, Meniere's Disease11 Comments

Yesterday I woke with much more swelling and pain.  Still no vertigo. But started getting pretty dizzy, after taking pain meds.  There is such a fine line between taking enough so I can tolerate the pain, and taking too much to cause vertigo.  Often the  vertigo will come before the pain is under control.  I really hate having to take pain medication.  They make me feel drunk, and getting drunk when you have vertigo issues is not a good idea.

Had a great visit with a couple of friends last night.  It was so good to see them, I haven’t seen them in a long time, but we keep up regularly through instant messaging and email.  When they first got here, I was feeling pretty rough, I wasn’t sure I was going to be able to really enjoy the visit.  But I knew these friends would understand.

When they first arrived I had a little bite to eat and took a pain pill, my first in about 9 hours.  (I was really very hesitant after the way I was feeling that morning.  I do not like the drunk feeling.)  Luckily, the pain got better, and the visit was very nice!  Plus, my friend brought me a bunch of clothes to try.  (as I think I’ve mentioned before, I’ve gained a ton of weight this year, and I just don’t have anything to wear.)  I haven’t been able to go through them yet, but I’m just thrilled I will have something to wear that doesn’t feel way too tight.

I had a rough time going to sleep,  but seemed to sleep better once I finally drifted off.

Then I woke up this morning…what a difference.  I started to lift my head to get up to go to the bathroom, and the world started moving.  I put my head back down, things calmed, and I tried again…same results.  I decided to wake up Stuart to have him help me to the bathroom.  Again, I tried to get up, with his help this time, but the world went crazy!!!  I laid back down, and things still were spinning out of control!  Thankfully, it didn’t last long, but every time I tried to lift my head the same thing would happen.  I don’t know how we managed it but we finally got me to the bathroom…ahh…relief.  Getting back to the bed was rough, but once I was lying down again, things were much more stable.

The swelling around my ear was worse, but no fever,  no redness, and it’s not hot to the touch.  Thank goodness.

I decided to lay with my left ear down, to see if having the fluid drain some would help.  I could hear it gurgle, and feel it, but very little came out.  I slept for a while.  Then I had to go to the bathroom again.  Ugh.  I tried and tried, and finally I decided it could wait.  I feel asleep again.  Stuart decided to call the ENT on call at Duke, just to make sure this swelling issue wasn’t something to be concerned about.  She said, she thinks it’s just post-op swelling, she suggested ice at first, but we found out fast last time, ice on an open hole to the vestibular system is not a good idea. (Instant Vertigo!)  She also suggested elevating my head.  We slowly did this, first we got a thicker pillow, then added a pillow under my back (so my neck wouldn’t be at a severe angle), then added another pillow…now I’m at a slight incline, and the swelling has gone down quite a bit.  I’m still having bouts of spinning, and sharp pains shooting through my head.  Today has not been a great day.

This is so different from the first surgery.  I didn’t have this severe swelling.  (It has been swollen all around my ear, down my neck, sticking out about an inch.)  My ear drained well the first time.  I had a tube in my right ear, and it drained a lot.  I also have a tube in the left ear, and I know it’s open because I sneezed yesterday and felt the rush of air blow through it, but very minimal drainage.  I keep feeling fluid moving around in my ear, but only a very tiny amount is coming out.  I did have some very red blood come out this morning, not a lot, but it’s not that clear gooey discharge I had the first time.  I keep thinking, if my ear would just drain out, then I’d feel better.

The pain from the first surgery was much more intense after the feeling in my ear came back.  The damage to the cartilage was intense.   Question now is, if I’m this bad off now, what’s it going to be like when the feeling in the ear comes back?

I’ve started writing this post about mid-day yesterday, now it’s late Sunday night, and I’m just wrapping it up.

To sum things up, I feel horrible.  Today has been very uncomfortable.  I feel like I’m burning up with fever, but if you take my temperature I’m not.  If I move my head, the world moves….sometimes much, much worse than other times.

(Please forgive me, but I did not reread this post for errors.  I simply don’t feel well enough.  No picture either?  I really must not be feeling like myself.)

Tomorrow I should be posting for the next PFAM blog carnival hosted by Sharon over at Bed, Body and Beyond, submissions are due tomorrow by midnight, in whatever time zone you happen to be in!  (Luckily, I wrote most of my entry before the surgery, so I just have to touch it up a bit.)

The topic?  Why do we write?  Please think about sending in your own submission.  Sharon is great, and if you can’t make it by midnight tomorrow, drop her a line, she can probably give you a little more time.  The carnival will go up on her blog on the 7th.  So check out her call for submissions here: http://sharonwachsler.blogspot.com/2011/10/call-for-subs-pfam-blog-carnival.html

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.

What Makes the World Go Round???

On By WendyIn Meniere's Disease8 Comments

What makes the world go round, and round, and round…I don’t really care I just want it to stop!  Please…oh please!  (I’m asking very nicely…please.)

Spinning world. Photo Manipulation by W. Holcombe

Since Wednesday I’ve had almost constant vertigo.  On Wednesday, I had two vertigo attacks.  On Thursday morning, I woke up about 6:30am spinning.  I was dreaming, and in my dream things started to spin, I woke up and it was still spinning, not a good way to start the day!  On Friday, I had a very severe headache with vertigo for most of the day.  Today, I woke up around 8:30am, again, spinning.

This has been a turbulent week.  Luckily, most of these attacks weren’t the gut retching kind.  Most of the time, I’ve just had to keep my head very still, and things were bearable,  but if I move, even fractionally, the world spins.  Today, it has lasted all day.  For the first 5 hours of the day, the only relief I had was when I laid on my side, with my head very still.  If I moved slightly the world spun out of control.  While lying down it was just a bit wobbly.  Unfortunately, I also had some GI issues today, and those 10 feet from my bed to the toilet were a harrowing experience.  Finally, things have calmed down a bit, but still if I move my head, the world spins.

I see Dr. Kaylie, my Otolaryngologist and Vestibular Specialist,  on Tuesday.  We have to discuss different treatments, including having the endolymphatic enhancement surgery on my left ear, or streptomycin injections (to kill the balance nerve)  I can’t stay like this.  My husband is looking for a new job, he can’t be afraid to leave me alone.  I can’t be terrified to be left alone.  However, it will be hard to undergo an expensive treatment right now.  umm..hubby unemployed, COBRA for insurance.  Not only are the COBRA premiums outrageous, but we still have to pay 30% of any procedure.  I hate that healthcare is so unfair.  When we get our bills from the hospital or doctor, it has the cost, then the deduction because we have Blue Cross, then the amount the insurance covers, then what we pay.  (often just the co-pay, unless it’s something special, like surgery.)  If we were charged the deductible amount, like Blue Cross is, we could pay for it without insurance, the premiums from COBRA are so high, it would cost less if we could pay that way.   Our healthcare system sucks!

A little story about why Stuart and I got married when we did….  Stuart and I were engaged, but we hadn’t set a date.  His mother had breast cancer, she had been in remission, but unfortunately, it returned.  We didn’t want the stress of our wedding making things harder for her.  We wanted to wait until she felt well enough to enjoy it.  Unfortunately, the cancer spread, and she died before feeling better.  (yes, if we had known this was a possibility, we would have gotten married sooner, so she could be there….hind sight.)  The week she died, I found out I’d be losing my health insurance in 3 months.  So we planned a wedding, fast.  We got married on Stuart’s parent’s anniversary.  In a way it was nice that we had something so joyful to plan and think about right after Stuart’s mother’s passing, but in an ideal world, we would have put more time between the two events.

Yes, you could technically say, that Stuart and I got married so that I could have health insurance.   That’s just not right.   We should not have been forced to choose our wedding date based on health insurance.   (It is a big joke in the family though that we are the only people they know who can plan a wedding in less than 3 months for less than $2000!  And it was a nice wedding too.  Small, but very beautiful, and very, very special.)  Perhaps I’ll tell that whole story at some point.  My point right now is that NO ONE should have to do without health care because they don’t have health insurance.  I wonder how many people get married so their spouse can have insurance?  Or how many people stay in a job they hate so they or their family will have health insurance?  The priorities of our government is just so skewed.

*Jumping off of my soapbox now*

I have a big request for any of you who have to go through these attacks alone:  Please give me any tips you have on how you do it?  I’ve done it in the past, but I used to have clues that an attack was coming, so I could get prepared.  Wet cloth, empty buckets (or at least to the toilet)….  Now it happens very suddenly, no warning!  Bam, I’m spinning.  Today I had the hardest time just reaching in my night stand to get my medicine.  So, any advice?  How do you do this alone?

Over did it, and Just Saying “No” – my answer to the holidays.

On By WendyIn Chronic Illness, Meniere's Disease7 Comments
REST by W.Holcombe.

**this post was started on Wednesday evening, finished Thursday morning**

Yes, I had a great day earlier this week…Monday I think it was, things are all a blur now, I had a beautiful day.

After my beautiful day, I hurt so terribly that night.  Every muscle, and joint ached.  I took a very hot bath with Epsom Salts, like my massage therapist tells me too.  It helped, but then I got all woosey and dizzy when I got out of the tub.  Change in temperatures was too much for my head.  (I tried to do it gradually, but it didn’t work out.)  Luckily the dizziness subsided, but I had a very hard time sleeping because of the pain.

The next day was an in the bed day.  Just one big ache, and the tinnitus was yelling!  So I just relaxed, was on the computer for a while, read for a while, and drew for a while…made a lovely butterfly, I’ll share it soon.

Today, I awoke feeling better.  I got up, went downstairs and started to make my own breakfast.  Then I started to feel a bit unsteady and turned it over to Stuart, didn’t think I should be using the stove.

Twice today I had an attack!  However, they didn’t escalate to the OMG I’m going to die while retching my guts out, type of attack.  They both came on fast, and we worked fast getting the meds in me.  Stuart got everything prepared, but it calmed down.  On both occasions, my head started to spin, I got very hot, and my stomach started to do flip-flops.  I do remember saying earlier in the day that I felt like I had a nervous stomach, Stuart asked what that meant.  I explained, “I feel like I used to when I was about to take a big test, or a date was late picking me up…that kind of thing.”  He smiled at the date thing, but hey, I’ve being stood up is a horrible feeling.  However, that passed, I felt alright.  Then a bit later, I was oh so sick.  I wonder if the “nervous” stomach was a clue?  I’ll try to pay more attention to the next time that happens.

**added to post Thursday morning**  I didn’t have to wait long.  I tried to get to sleep a little early last night, finally around midnight I drifted off, and about 6:30am I was dreaming I was spinning, and woke up to the world in a full spin.  This attack was already in full-blown nastiness before I could move my head to get meds in me.  It didn’t last long, thank goodness.  And I will spare you all the details this time.  One thing that continues to linger with me about it, is my headache.  I slept a few hours, but my head hurts so much.  I finally felt I could keep something down long to eat a little, just so I could take a pain pill.  Right now, my head still hurts, and my stomach hurts….what a great way to start the day.

I don’t understand it.  3 attacks in less than 24 hours?  It’s such a turn around from just a few months ago.  Do I continue to try to get back to that with Dr. Gray?  Or do I push for a different treatment?  But if I get a different treatment, how does that affect my low cerebrospinal fluid pressure?  So many questions, and some how, I don’t think I’m going to get many straight answers.  I see Dr. Kaylie next week, and Dr. Gray on Dec. 5th, we’ll see what happens.  I think I’m going to get a lot of , “it’s up to you”, but I really need some advice.  I hope they won’t let me down, and I really hope they will work together on this.  What will I do if one suggest one treatment and the other suggest something else?  *OK, my mind is officially off-line right now*

I planned to do a post on how to better prepare ourselves for the holidays.  You know, trying to reduce the stress of the season.  I came up with a fool-proof plan for me.  I’m just not going to do it this year.  Yes, Stuart and I may do a little bit here at home just for us, but for the most part, I’m just saying “No”.

I can’t go to parties right now.  The noise makes enjoying myself impossible, and I feel very isolated.  Since Stuart just lost his job, we can’t give presents like we normally do.   We really need to be on a tight budget, who knows how long this will last.  Hopefully, not long, but we need to be prepared.  Plus, I simply don’t have the energy to do it this year.  I’m also terrified of having an attack at someone’s party.  Can you imagine?

I do think I will send out cards.  I want to send some people personalized letters that explain why I’m AWOL this holiday season.  Explain more about my illness, and stuff like that.  I think a personal letter will help people understand just how personal this is, and how it personally affects our relationship.  (another tip from Toni Bernhard, from her blog in Psychology Today, “Turning Straw Into Gold”.)

I still really need to work on learning how to know when I’m doing too much.  I don’t like having the fall out after a good day.  My friend Rita, over at Soul’s Comfort Corner , gave her secret, “The only thing that helps me is using a timer. Otherwise when I am having a good day I inevitably overdo it. If I limit my sessions to 45-60 minutes and spread them out over the day I can “usually” do something almost every day even if I am only good for one session on a bad day…..”  What a great idea!  I’ll be trying this one, as soon as I feel I can move.

I hope everyone has a wonderful holiday season.  I’ve read a few articles that talk about how to make it easier on people with chronic illnesses.  The biggest one is to know how to limit yourself.  You don’t have to be super person, do what you can, and don’t beat yourself up when you can’t do something.  There are lot’s of hints, but I felt that was the biggest thing.  Take your time, and enjoy yourself, don’t push yourself too hard.  Wouldn’t you rather do less and really enjoy it, or do too much and be in agony?

We all know I have a very hard time with knowing how to pace myself, so I’m just bowing out this year.  We don’t do a lot anyway, we don’t have family close, or a close family, so this won’t be that hard.  I hope.  I really hope I don’t get depressed because I feel left out.  I want to feel joy that my friends can have a good time and enjoy themselves, even if I can’t be there too.  (of course, without me there, will they really be able to have a good time??)  hahahaha

Seriously, I’ve been reading Toni Bernhard’s book, How to Be Sick, and she talks about feeling joy in the joy of others.  This is something I really want to work on.  She mentions how easy it is for our emotions to turn to envy, and I know I feel that way towards some people, and some things.  I want to stop that, and feel joy that others have the opportunity to do things I can’t.  (Thinking, this will merit its own post.)

Here’s the link to a couple of Toni’s blog post I think you might find very interesting.  The first is a post about Heading off Holiday Stress, the second is How to turn Disappointment into Contentment.  I think both are very useful for making the holidays easier.

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.

I give already!

On By WendyIn Chronic Illness10 Comments
image by sodahead.com

There are a few things I just give up about right now.

1 – trying to do this months blogging challenge…not going to happen.  Blogging every day right now, too much stress to think about it.  Even trying to write posts in advance for them to come out on the right day…it’s too much.  Plus, I don’t see the point, why was I trying to do this again?  To say, yes I accomplished this?  Is it reaching more people?  I haven’t had any comments from new people.  I have noticed I’m getting more Spam.  I’ve been spending so much time trying to keep up with my writing, I haven’t had the time to read other people’s post.  I’d rather spend my time keeping up with my friends.

2 – trying to lose weight.  Yeah, I feel like I gave this up months ago, and probably did, but while I’m feeling this crappy, and so much of my nutrition is going right through me or coming back up…I’m not going to be too weight conscious.  (however, every time I look in the mirror I think…who is this fat person? *sigh*)

Look at the pictures below, one was taken January 2010, the other was taken July 20th, 2011.  See how much fuller my face is?  And I’ve gained weight since the latest picture was taken.  (you do not want to see the rest of my body…I’ve gone from a size 8 to a size 16.)  *sigh again*  But how do you lose weight while lying in bed, and can’t cook?   Plus I have this little thing that keeps whispering in my head..”if you eat something you’ll feel better.”  How do I get rid of that?

I know, many of you will say, there isn’t much difference, but in the photo taken in July, I was trying to not show how large I am.  I had my head tilted up, to take away my double chin, I had my hair partially on my face…on the left I weight 147lbs. on the right I weighed about 182lbs.  I now weight 190lbs.  The heaviest I’ve ever been.  *I literally sighed again*

Picture of me taken January 2010
Photo of me taken July 2011

 

 

 

 

 

 

 

 

 

3 – who ever is holding this vertigo, and headache pain over me…I just want to say…I give up!  What ever you want, I give!  Just please stop.  (Don’t worry my friends, I’m OK, I know it’s just my lot in life right now, a season some might say, it’ll pass, I’ll make sure of it.)   I’m learning so much about me, friends, chronic illnesses… I’ve decided to take this time that I’m feeling crappy to just reflect, and reevaluate what is most important to me and possibly change my priorities.)  One thing I know for sure, I want to live every day I feel better to the fullest!  Live in the moment!

4 – I give up on trying to go to parties, or noisy restaurants, or any place that’s noisy.  Let’s just say, I give up on trying to hear in noisy situations, and getting so frustrated, and feeling so isolated because of it.  One on One, or Small Groups are better anyway.

Now for an update on how I’m feeling:

Since Wednesday I’ve had a constant feeling of vertigo…no not the major throwing my guts up attack kind, but every time I move my head…Whoosh!  And if I close my eyes it feels like I’m moving.  Sleep has been very hard.  But I did get a few hours last night.  If my head would stop hurting I’d probably be able to get more.  My head, oh my aching head!  My head hurts so much.  My neck hurts.  It’s hard to turn my head…that’s probably a good thing since it makes me dizzy, but it hurts.  (Oh, did I mention it hurts??!!  And nothing I’ve taken for it touches the pain.)

I’m having a lot of GI distress for the past few days too.  If I were running a fever I’d swear I had the flu…at least I’m not that achy.  (except, did I mention my head and neck really hurt?  ….  yeah, I guess I did.)

I finally realized exactly what was so very different from this past attack than previous ones (yes a few things were different, but I think this is pretty strange.)  Normally my vertigo spins clockwise, this time I was spinning counter-clockwise.  I remember distinctly how the TV was falling to the left, and the vent on the ceiling was moving to the left.  Isn’t that strange?  I know it probably doesn’t mean anything, I just thought it was strange.

Anyone else notice how they spin?  Clockwise or Counterclockwise.  I have a friend with Ramsey Hunt Syndrome and she told me she always spins counterclockwise.  (but, I don’ t think she has extreme vertigo attacks like those of us with Meniere’s…but I’m not sure, I’ll have to ask again.  However, we all know, even minor vertigo can cause great distress.)

To conclude, many people say to never give up, but when you have a chronic illness you have to realize there are things you simply need to give up.  Things are different now.  I used to have a very hard time telling people “No”, now I often say “maybe”, and often I have to say “no”.  I must decide, is it worth the consequences.  Will I feel worse afterward?  Will I feel isolated because I can’t hear?  Will I be in a safe place if I have an attack? There are many things to think about now, I can’t just say, “sure, I’ll do that”.  I have to do what is best for me physically, and mentally.  (as some may say, I need to really think about how I’ll use my spoons.)

Stress makes most chronic illnesses worse.  Even good stress.  I have to remember that, and choose accordingly.

How has having a Chronic Illness changed your priorities?

 

 

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.

What is Between Love and Hate?

On By WendyIn Chronic Illness2 Comments
photo courtesy of ilovemydesktop.com

This was actually a prompt on NaBloPoMo in October, I saw it on another’s blog and started to think about it…and realized the answer…Me.

To be more specific, how I feel about me and the things that have been happening to me.

I still love me….but at times I really hate my life.  I know that sounds negative, and I don’t mean that I always feel this way…but sometimes…when I get overwhelmed by the losses, the pain, the vertigo….I hate it.

Such a dichotomy.  Sometimes I feel there are two of me.  There is the person who hates all of this, who just wants everything to return to normal, to be like it used to be.  Then, there is the person, who is grateful (yes, grateful) for all that I have learned, the friends I’ve made, the life I have now.

Yes, I have chronic illnesses, I often wish I didn’t.  However, they don’t define who I am.  I’ve found that some people only think of me in terms of my illnesses now.  That’s sad.  They can’t see the person I still am, or the better person I’ve become.  I do feel I’m a better person now.  Don’t get me wrong, I wasn’t a bad person before, but I feel better about myself now.  I actually have more confidence, feel like I can make a difference in a person’s life, and I’m more appreciative of what I have.

Do I hate my life…sometimes.  But most of the time, no.  My illnesses are a part of me.  It isn’t all bad.  Yes, I have some very bad days.  However, I feel closer to my husband than ever.  I have a great support system.  There is much to be grateful for.

What is between love and hate?  Perhaps, acceptance.  Accepting that the things I hate and the things I love about me can live together in harmony.

This post was written as part if NHBPM – 30 health post in 30 days: http://bit.ly/vU0g93, and is also a part of NaBloPoMo.

P.S. – Update 2 weeks after the last patches.  I think they are working.  The spinning is better.  I have a bit more energy.  Some days are better than others, but over all, I think I’m better.  I have been having migraines, but I really think they are more weather related.  My hearing hasn’t returned, but to live without the spinning, I’ll learn to live with the loss of hearing.

She’s Low – Again…

On By WendyIn Chronic Illness, CSF, Medical Tests, Meniere's Disease, Pain6 Comments

Hope you don’t mind, but so I don’t have to tell the story over and over….you know how it gets.

Here’s a copy of the mass email I sent out to friends and family last night:

I had a lumbar puncture today. (as you know I haven’t been doing well for the last few months.)

The doctor expect to find that I had high Cerebrospinal Fluid (CSF) pressure.  She said I had “high symptoms”, so we go in expecting my CSF to be high.  Surprise, it was low.  Lower than it has ever been.  (this was my 6th LP).  She decided, since I had so many symptoms of high pressure, she was going to take some CSF out to see if I felt better.  The more she removed, the worse I felt.  my head started to hurt so bad I couldn’t stand the light in the room and I was getting nauseous.  So she put back in all the fluid she removed, and started adding more.  5cc’s at a time.  She ended up adding 15cc’s extra.  (they said that’s a lot)

My pressure went from 15 to 21.5.  Now they have a number that I feel my best at. if they check me again, they know something is amiss if I’m under or over 21.5.

So right now, I have been taken off all meds that might lower my pressure.  I have to drink a lot.  (I think I already do, but she said more!)  Trying to keep my pressure up without having to do more patches.

I’m hoping that we can at least keep it up long enough that I can attend Stuart’s dad’s wedding.  If it drops after that, I’ll be seeing Dr. Gray again.  She compared the two myelograms (CT scans done with contrast that shows leaks) that I’ve had.  One from November 24th, 2010, the other from August 22nd, 2011.  She said there were no real new leaks, the leaks came from the same places.  I was just breaking through the patch matterial a little on some, or perhaps the patch didn’t cover all of the leak.  Also, from what I understand they didn’t patch them all for fear of making my pressure spike too high.  She said she saw 2 spots she knows she would want to patch if my pressure drops again.

Unfortunately, she said I’d probably notice the results in a week or so, then I could just come in and get patched…but it often takes a month to get in to see her.  That would put a bit of a kink in a trip to Tucson.

So I will drink many fluids, and stop avoiding caffeine so much.  (caffeine can raise your pressure)

Thanks for all the healing thoughts today, I felt them all.  Really, I did!  I think it’s amazing that so many people were thinking of me at the exact same time!  How Awesome!

One last thing  Other than my back hurting a little, I feel great!

That’s how the email ended…then later that night…

The tinnitus started getting loud again, and my hearing kept cutting in and out. (well, the hearing in my right ear, how would I notice in my left ear…unless of course if it came back.)  It was so strange, I’d be listening to Stuart and all of a sudden I couldn’t hear him, then I could, then I couldn’t…We put a new battery in my hearing aid, and Stuart even listened through it for a while to see if it would cut on and off…nope, it was me.

Now today, I still have a buzzing tinnitus that’s a bit louder than I’d like, but I can hear again…not off and on.

Strangeness.

Found a cool article about it…it starts out “A decrease in cerebrospinal fluid pressure may result in an endolymphatic hydrops ….”  Well, that’s interesting.  The case study isn’t like my case, but it’s interesting just the same.

Now, let’s move back to my first arrival at the hospital…

When we arrived to check in we were told I had an appointment on the 17th, but not the 11th.  Stuart explained, that he spoke with Dr. Gray and she had a cancellation on that day, and said she could see me sooner.  The person at the check-in desk got on the phone, and we stood there and waited.  I started to cry, but think I hid it well.  She asked us to wait in the waiting room while she tried to find something out.

I broke down.  I told Stuart that if I didn’t see Dr. Gray that day, I wasn’t coming back.  I’d call Dr. Kaylie and tell him, I was finished with all of this, and we’d have to find something else.  I wasn’t going to continue to wait months and months to see this doctor for a glimmer of hope.  (yes, I know, probably a bit extreme, but if you’ve been reading this blog, you know I have been scared and my emotions have been raw and on edge.)

Finally, they said I did have an appointment, but Dr. Gray was running late.  Very late.  My appointment was at 3pm, and they didn’t get started until after 5pm.  (I think they messed up the scheduling and I didn’t have an appointment, but Dr. Gray decided to see me as the last patient.)  But at least I got in there, and I know something now!

I’ll share with you the first doodle I did in the waiting room:

Little Miss Sad Mad
As you can tell this little lady (my inner self) was very mad!  Gnashing her teeth, sparks flying from her head…I wouldn’t want to be in her way!!  On the other hand, look at the eyes, they are very sad…poor thing so conflicted.
My next doodle was much more…well, just a doodle, but Dr. Gray saw it and just went on and on about how I was hiding being an artist…and how much she loved it…so I gave it to her.  She hugged and kissed me.  (maybe if I need another appointment, I will use a drawing as a bribe to get in sooner!) hehehe
I’ll keep you posted as my symptoms change.  (headache is barely there today!!!! and I’m not dizzy!  Woo Hoo!)
I’m sorry I haven’t been keeping up with my reading and commenting on other’s blogs.  I will try to catch up soon, I promise!  Hope it’s all good news.
Thank you all again, for the caring comments, thoughts, notes…ect.  It means more than I could ever express.

Why am I so nervous?

On By WendyIn Medical Tests, Meniere's Disease, Pain10 Comments

On Tuesday I will be receiving 6th, Lumbar Puncture.   I know it’s not a big procedure.  It doesn’t really hurt.  But I’m so scared.

After the first LP, they thought they knew what was wrong with me.  Low CSF pressure caused by spinal fluid leaks.  Simple diagnosis, treatment hasn’t been as simple…I keep getting leaks.  So now. as I mentioned before, we are facing a possible new diagnosis.  (Intercranial Hypertension with Spontaneous CSF leaks)  From what I understand, even harder to treat.  The meds that are supposed to help, well, I’ve been taking them and either the side-effects are too much, or I don’t see where they are doing anything.

A possible shunt has been mentioned.  (I don’t even want to think about that right now, but I know it’s a real possibility.)

I have such conflicting emotions right now.  I feel emotionally stronger in many ways, and in other ways, I’m scared out of my wits.

The art has been helping me so much!  There is a possibility I may have a small show in the next 6 months or so.  Something to really work towards.

I have finally come to terms with the fact that many of my friends are simply not going to be there for us.  But we have some good neighbors who proved recently that they can be relied upon.  It’s hard to explain, but I’m better about it.  Not as hurt…finding out who are really important to me.

So, back to the fear.  What am I really afraid of?  I think I’m mostly afraid of an iffy diagnosis.  One of those, “Well, we know what it’s not….”

That’s where my head is tonight.

I’ll leave you with this drawing I did the other night.  I was trying to sleep…all of sudden the idea of this came to me..I had to draw it!

Window of the phases of my life.

You can find out more about what each window pane represents on Create to Heal.