Tag: Fear

I’ve been avoiding this…..

On By WendyIn Chronic Illness15 Comments

For some time now we’ve know that I may have a type of high Cerebrospinal Fluid Pressure, where it rises too high then blows out and goes too low.

I mentioned that they caught it in the high level this last time, and we have a name for it.  Idiopathic Intercranial Hypertention (this is a link to a Wikipedia article if you are interested).  I’m going to call it Intercranial Hypertention of IH while I’m talking today…Okay?

image courtesy of http://wn.com/intracranial_pressure

I won’t sugar coat it….I’m scared.

I’ve talked about some of my symptoms.  They don’t know if they are being caused from the IH or from the medication side effects, yes they are that similar.  Can you believe that?  I will be going back in soon for another Lumbar Puncture.

So why haven’t I felt like this before.  Some times I may have for short periods and just thought a Meniere’s attack was coming on, or any number of my problems, but remember, I’d have blow outs.  Literally, my spinal column would start to leak in weak spots and my pressure would fall, often way too low and I would have those symptoms.  If you’ve been following me for long, you know what that’s all about.

This time, not only am I having balance issues, but it’s affecting my vision.  Remember, I’m losing my hearing at a pretty rapid rate.  Now, I may be losing my sight.

I had not read much on this, I thought my pressure would have to be much higher for this to happen, then I read an article on the Intercranial Hypertention Research Foundation site last night that startled me.  The person who wrote it could have been interviewing me.  Here is excerpt from the article about visual symptoms,

“The most common visual symptoms are:

Transient Visual Obscurations (TVOs): These are often described as momentary grey spots, or a dimming or blackout of vision that occur in one or both eyes, especially after a change in position (such as standing up from a seated position). TVOs are the most frequent visual symptom but are temporary; vision generally returns to the affected eye or eyes after the TVO episode, which lasts approximately 30 seconds to a couple of minutes. They may also be accompanied by pulse synchronous tinnitus.

Blurred vision: Blurred vision may be a direct result of papilledema and swelling in the surrounding retina. It can also be the result of a retinal hemorrhage.

Double vision (diplopia): Double vision can be due to sixth nerve palsy.

Decreased contrast sensitivity: Over time, chronic IH may affect the ability to perceive changes in contrast. Some with IH report examples of this decreased ability, such as the grey or faded out appearance of black text against a white background. ”

It does mention that ” in many cases, the surgery successfully relieves optic nerve swelling and improves or restores vision.”   That was very encouraging.  I’m also very hopeful they will get this under control before things get too advanced, but I have not been feeling good for some time now.

We all know acceptance of a chronic illness is a big hunk of the battle.  Once you accept it, you can do so much more to make your life more tolerable.  But how can I accept this when I don’t understand it yet?  When I feel so confused so much of the time?  When I’m told, who knows, you may have to have a shunt.  Oh, that’s great to hear.  A shunt.  More brain surgery to put a tube in my brain to drain fluid to my abdomen do they can control how much CSF I have all the time.  So if I have a shunt, will this interfere with me getting a cochlear implant?

More questions to ask the doctors.  And the new headache specialist hasn’t returned Stuart’s calls.  Not feeling good about that!

So right now, there are so many unknowns.  I had a strange vertigo attack yesterday.  It was a positional attack, but it wasn’t really.  If I got in one position it got much better but it was still there and everything was doubled.  I was freaking out.  In full panic mode.  Sweating, and these little cries coming out of me, saying something is wrong, this isn’t right….stop, please stop….and trying to slow my breathing…but not doing a good job.  Unfortunately, we were downstairs, and Chris witnessed most of it.  I was mortified.  Finally, I calmed myself down, if I can get to the point where I can just chatter, about nothing, just talk and talk…I can let it go and even if the world is moving I’m somewhere else.

Afterward, we came upstairs.  For most of the night I was off.  The walls are wavy, the floor it tilting, I’m living in a Fun House, but I’m the only one who sees it.  For days I’ve been telling Stuart that I feel like something bad is going to happen, someone is going to die.  Truthfully, I thought it was our dog.  She’s 19, she is doing well, but in dog years she’s close to 100.  Last night I broke down and was convinced I was dying.  I told him how sorry I was, that I know I’ve talked about giving up but I promised I hadn’t given up on him that I was still fighting but I was sure I was dying. At first he tried to say no, but then he knew he just needed to talk to me.  I told him what I wanted at my funeral, or rather who I didn’t want there…I want a party instead of a normal funeral where people remember me and have fun, I told him to display a photo of me when I was skinny, not a recent picture.  I wanted a bouncer at the door, and everyone had to give their name, if someone gave their name who was on the NO list, they were to be told, “I’m sorry, you should have visited her when she was alive, you are not needed here now.”  (Yes, I’m telling him all of this with slurred speech and I couldn’t focus well, but I was sure about all of it.)

So he asked, if you were possibly dying what would you like to do before you die?  The only thing I could really think of was to renew our vows.  I told him somewhere near the water….a nice lake, or the beach, or a water fall (I bet that would make me dizzy though).  He was all for it.  He didn’t realize that I wanted to renew our vows so I could point out to him that they were until Death Do Us Part….and I wanted him to carry on without me.

Let me say right now, I DO NOT think I’m dying. (Well, no more than anyone else is.)   But sometimes lately, I feel like I must be.  My brain isn’t working quite right and that is the only thing that makes sense to me, but then again….my brain isn’t working right!!!

I have been in touch with both my psychologist and my psychiatrist….I’m making sure everyone is looking out after me through all of this because I know my brain isn’t working just right.  One shouldn’t see things, or forget things, or not know where they are….it’s kind of freaky.  I’m so grateful Stuart has the type of job he does so he can be with me all the time right now.

So I’m in a holding pattern right now…about everything

Right now, there are no good days.  I may have some decent moments, but no completely good days.  (I even told Dr. Gray that I feel like shit!) – actually Stuart was on the phone with her and she heard me in the background.  I was trying to stop cursing, my therapist said, it’s probably not a good time for that.  People under this much stress tend to feel better if they curse more.  Alright!!!  Stuart can no longer bitch at me for my language….but I am trying to tone it down..I do get a bit out of control….can you believe it?  Me?

Titty Sling Update – I got too tired again trying on bras…and they let Stuart come in and help me, I’m sorry to all of you ladies who have to do it alone!  Finally I begrudgingly picked one.  I didn’t like it but it served the purpose.  We walked out of the dressing room, and I pointed to a bra, and said, I wanted that one, but they were out of my size.  Stuart looks up on the top rack…thank goodness he’s over 6′ tall!!  and found one in my size.  Once again I said, I’m just buying it!  So we did.  And it fits like a dream!  I love it!  But it’s white.  ick.  I can’t wear white with let’s say…..white.  And it was on clearance – $9!!!!  but no more in stock *sad pouty face*.  We will be scouring other stores tomorrow to see if they have any left!

OH…when I was in the store, an employee, ran into my walker with her shopping cart TWICE!  She was picking up clothes people put in the wrong place.  She saw me, looked me in the eye, and bam!  I have been hit!  She said something I could not understand.  The next time, same thing.  I thought….I’m so glad this store will hire the mentally challenged.  (Wow!  a big difference from the $.02 that pissed me the other day huh?)  I admit she did annoy me, but I just let it pass.  The only thing that really bothered me was that she was also the lady who was in charge of the fitting room.  I asked if Stuart could help me.  Yes, but he had to leave his things outside.  (his things were, his sweatshirt, and shopping bags – not store merchandise)  He asked where, she mumbled something and pointed to a shopping cart full of stuff.  Stuart said, “I wonder if I’ll see that stuff again?”   We did, but we had to dig for it down in that shopping cart.  How bizarre.   But I really felt, mentally challenged, not just lazy like the $.02 lady…. I think that made a huge difference.

So…I’m scared, that’s normal right?  I’m a bit off, somehow I have to hope they can make it better….somehow.

Going to start talking to doctors about disability, afraid about that too.  If my doctors said they don’t think I’m disabled I think I’d fire them.  Oh, I’d be wayyyyy too angry to speak.  I know I’d have a break down right there.  Yep!  So I have an email to my therapist about how to talk to them about this before I actually do it.  I’m way too touchy right now.

The new baby should be here no later than Thursday.  (they are inducing if she doesn’t go into labor before then).  I’ve barely seen the mama.  She has been in the guest room with the door closed in the dark for most of the time.  Chris has been around.  It’s been kind of surreal.  Especially with all the new stuff going on with me, and she was diagnosed with this same thing with the pregnancy, but she seems to just have the headaches.  I deal with the headaches very well, I’ve been having migraines since I was 11.  Poor Penelope has never been sick.  This past 6 weeks has been hell on her I think.  I hope things are easier after Rowen is born.

Forgive the look of the blog….I’m working on it.  I’m still not there yet, but I’m playing.  It’s hard to read a lot because things are blurry so forgive me if I don’t make it to your blog a lot, or if I have many misspellings.  But the graphic stuff is kind of fun (if they would just tell me what size it needs to be)…I’m playing…It will turn into something we all love I hope!!

hugs to everyone who needs one today!

 

 

I’ve said it before, and I’ll probably say it again…what a difference a day can make.

On By WendyIn Chronic Illness6 Comments

Today was a breath-taking beautiful day.  The sun was shining, it was in the 80’s F….yes the 80’s on the first day of March!  A good friend of mine just got married!  I’m so very thrilled for her, you may remember me passing along the candle lighter award to her….Congratulations Fiona and Jeremy…I adore you!

I slept longer than I have in a long time, I woke up with a minimal headache (my normal every day type of headache).  I was still seeing double but it didn’t seem to last as long.  I lounged in bed for a while with the window open and enjoyed my breakfast.  Then I read a bit on the computer and decided to get dressed for the day.  We were refinancing out house to a better rate, and we had to sign all the papers at the lawyer’s today, so I had places to go.  I decided to start getting ready very early.  About 2 1/2 hours early.  Just in case.  I wanted to do a little then rest, do a little more, rest…eat lunch….rest….you get the idea.

You would be so proud of me…I know I was.  Darn I should have gotten a picture!!  I French braided my hair.  I’ve never been able to do that!  It has always turned out lopsided or with straggling hairs, but usually it is a “Dutch” braid.  A French braid lies flat against your head the Dutch braid is kind of backward, it looks like a braid stuck to your head….it sticks out.  It’s kind of neat, but not what I wanted.  And…imagine this, I did it on the FIRST try!!

I tried on a few things to wear, but the one’s that I don’t look like a blimp in were too hot, I admit I was getting sad and upset.  Then I thought of a white tank top with an orange cap sleeved sweater over it that has one button around the abdomen that makes me look much thinner.  I actually put on makeup!!  I got ready, got dressed, and got down stairs….all by myself.  I was beaming with pride.

Stuart and I decided if I felt well enough after our visit to the lawyer we would have a date night and go to Fishmonger’s.   I LOVE crab legs.  I know he just got them for me on Valentine’s day…but it was so nice to have a date night with my hubby.  In a restaurant right across the street from where we met.

Fishmonger’s is one of those little seafood restaurants that make you feel like you are on the Carolina Coast.

This is the type of tables they have there.

I am having a very hard time with my hearing.  Stuart needs to step up his ASL practice.  On average I have to ask someone to repeat themselves at least 3 times, and after that I just drop it.  It’s too embarrassing.  And it’s usually just some small talk.  I can’t remember if I’ve mentioned it here, and I’m too tired to look back and finish this so I’ll give you the short version.  Saw Audiologist on Monday.  She thinks I’ll need a cochlear implant soon but the requirements change with insurance companies.  We have new insurance starting this months.  (they are going to love this) The first question Stuart is going to call and ask is what

their criteria is for covering a cochlear implant? The surgery cost between $30,000 and $100,000 and our out-of-pocket will be $150 Yay!!!

So I may have told you…forgive me.

So while we were out, it came time for my medication. All of a sudden I had a sharp pain in my head, I asked what time it was, exactly time for my medication! I asked if we happened to remember….ooops, nope. So I was 2 hours late taking it. By the time I got home, I was not able to walk unaided, I was slurring my words, I had to really concentrate to understand things…..it’s kind of funny, in a way I feel like I’ve taken some drug…like a downer or something. But it’s all being caused because I missed my medication. Ahhhh!

Right now I’m running a fever again. Every night, only at night. Strange huh? I take some Tylenol it goes away.

I still have a lot fo figure out with all of this, and it will take some time. It is apparent that I’m getting better with the side effects and I’ll probably get even better when I get some potassium (Diamox is known to deplete potassium.) I have been trying to eat a banana a day, but it’s hard when that’s the cap on the amount of fruit I can eat in one day. So we went to buy some and the store was out. How rude!

I’ve been watching these cooking shows and now I’m just dying to cook. But I need to be more steady on my feet for that. Perhaps I see some slow cooker meals in the future. (much less dangerous, I can just instruct Stuart.) I bought some herbs recently, and got a free ounce of Saffron….oh….what will I do with this delectable spice?

Also, if you have never heard of or tried Pot Herb – it is a mixture of Chives, Chervil, Parsley, Thyme, Marjoram, and Bay leaves. This was delectable in Chicken Soup..and just on chicken….I can imagine so many things to do with this blend…why have I never heard of this french blend of spices before?

So…

What a difference a day can make. Do I feel this much better from all the well wishes? The joyous feelings I have for my friend? The fact that the Topamax was uped? The beautiful weather (you know I got to take the top off!!), or have I once again, simply decided enough. I can’t stand to live with you like that! Get up! Pick yourself up…even if you need help, and find something that satisfies you. even something small…and build it up again.

That’s why I say those silly expectations I had for this life…they must be fluid now, and change as I do.

Thank you all for believing in me.

 

 

Do you ever feel like just giving up?

On By WendyIn Chronic Illness13 Comments

I know I’ve talked about this topic before.  We all know I’m not going to kill myself.  But I find myself many times a day thinking….no wishing….that this would just end.  I’m simply so very tired.  I hear myself saying it all the time….I’m so tired.  I didn’t know I was fighting so hard before, but then when everything was drained from me, and I was left cold and alone with just me and my illness, I realized I had been fighting….and now I was losing.

I don’t want to die, and frankly if I did, I’m way to scared to do it myself!  The thought of the pain, the morbidity, the mess, who would find me, and my poor, poor Stuart.  Oh no, I couldn’t do that.

But I do want it to end.  Yet, I know the best I can hope for is that it will get a bit better.  It will never end…until I do.  And that’s not what I want…Really it isn’t.   This  past month has been a complete terror to me. It has worn me down, beat me, and made me into a person I often don’t know and don’t really like any more.  I never thought that my diseases might kill me until this past month.  The pain, the sickness, I got so very, very tired…I just could not see going on.  I could not understand how anyone could get this sick and not be dying.

I don’t believe I’ve explained all the details of my symptoms of those 25 days, I just gave the high-lights.  You all know about the migraines that varied in intensity on a scale of 0-10 (see my photo scale above) between a 6 and a 10 EVERY  DAY.  I had constant disequilibrium, and intermittent vertigo EVERY DAY.  I also started to have new symptoms.  For one the vertigo was not like the vertigo I get with Meniere’s (thank goodness).  Usually it was positional.  If I was lucky I could find a sweet spot and find a place where if I were very still the vertigo would stop or at least slow down so slow that I could handle it, but often I was stuck in that  position for hours.  I have also been having symptoms with my eyes.  Double vision with my left eye (always when I first wake up and when I’m very tired).  I see shimmers or movements out of the corner of my eyes.  I often think someone has walked by, but I’m alone., and the last one  I was seeing shadows and lights that didn’t match up with the lighting in the room.  I felt like a ghost was following me.

Now, I’m on the new medication, Diamox!  Things are getting better…yes on some points.  But the Side Effects are not fun.

Please know I have talked with my doctor about all of the following side-effects, she said most will subside, and if certain ones get worse to call her immediately.   With that said, these symptoms are driving me crazy.

  • tingling in the extremities.
  • drowsiness
  • excessive thirst
  • excessive urination
  • fever (this one we are watching, right now it’s low grade)
  • confusion
  • loss of appetite
  • and all of those that I’m already having….you know….things like….
  • dizziness,
  • nausea – vomiting
  • this one I just love…Headache!  (I know that’s incase that get it too low, but dang!)
  • muscle cramps
  • more bruising….well, let’s see doc, I fell down in the bathroom night before last because I was so confused from this drug, so I’ve got a lot more bruising, does that count.

Oh, my goodness, I do sound like a sourpuss don’t I?   But sometimes don’t you just feel like the cure is almost as bad as the illness.

And can you tell me why…all you very wise people out there…why is it bothering me so very much that I can’t get out and go anywhere or do anything that I want when I want?  I’ve barely driven in 3 years, but NOW I’m pissed because I can’t go somewhere when I want, and I’ll probably get sick before we get there and will have to come straignt home.  But oh…it just bites my butt.

And I’m very grateful that Chris and Penelope have been here, he’s been wonderful at cooking dinner, but even though I don’t feel like cooking..I’m beginning to feel funny about him being in my kitchen all the time.  I think I’m afraid he’s a better cook than I am and I’m jealous.  But I’m also jealous because, I want to be in my kitchen making new things, creating new dishes with the new spices I just bought.  Oh…so sad.  I miss my kitchen.

Please forgive this, but I’m having a hard time with Penelope’s complications.  They have found out she has pregnancy induced Intercranial Hypertention…Yeah, High CSF!  What are the odds.  So I have to hear all about it.  But in 2 weeks when the baby is due, her’s will most likely be gone.  Very rarely does it not go away when the baby is born.  So I think I’m a bit jealous of that.  She gets cured and gets a baby at the same time.

My lord, I’m pitiful.  I’m jealous over the stupidest stuff.  But really I’m very glad they could stay here and be comfortable here.  I’ve baredly seen them.  They seem to be doing fine.  Penelope stays lying in a dark room a lot.  I find sitting up much more beneficial to me when I have a high CSF headache, but to each his own I guess.  From what she’s told me about the guys who’ve given her LP’s I have not been impressed.

We dropped by Target on the way home today and I bought something that cost $1.07, I gave the woman $!.12.  She just hit the total button and put in the money and then had no idea how much I gave her or how much she should give me back.  You could see this complete blank look on her face as she looked at the receipt.  I said, “the change should be 5 cents, I gave you a dime and 2 pennies.”  No you just gave me a dime….oh, I was already ticked off that I had to beg to drop by Target on the way home, or normally I would have said, why don’t you just keep the change.  But no, not today.  “NO, I gave you 12 CENTS, you owe me 5 CENTS, and I don’t want pennies.)  She slammed the 3 pennies she tried to give me in the drawer and gave me my nickle.  and I didn’t feel bad about it at all , until just now.  And still I don’t really.  People do not take pride in their jobes any longer.  I used to cashier.  I was never more than 5 cents off….over years and years at different places.   People need to take pride, no you may not be getting more than minimum wage, but neither was I.  However, I still did the best job I could.  Is that so wrong?   I had a job managaging an art gallery, and worked part time at a little store making minimum wage, I worked just as hard at both.  When you are interviewed and you are asked if you are willing and would like to do this job and you say yes….then you do it!

So, this post has gone from me wanting to give up….I’ll talk more about that later.  I’m not giving up…but I am changing those expectations!!

To having a good work ethic, and I haven’t worked in 8 years.

Ironic huh?

How about a little W(h)ine?

On By WendyIn Chronic Illness9 Comments
A little W(h)ine anyone? photo from dreamstime.com free collection

Today I shall do something I very rarely do…I’m going to Whine!

(and take note, I don’t feel well, so I haven’t read over this post…it’s probably full of errors. Feel free to whine about it!)

I am trying to keep my normal positive, can do attitude, and I promise it’s here, but I feel so overwhelmed, I just need to whine for a little while.

So anybody in for a little pity party?  Plenty of W(h)ine will be served!

If you’ve read my previous posts you know I started having extreme “slosh” head on Friday, February 3rd.  Today is the 9th.  Since this began I’ve woken up with vertigo 5 days!  That is the absolute worst feeling.  I have no chance of taking the medications to perhaps stop it because I’m already spinning.  Ugh!  I do think the meds have helped make the attacks much shorter though. Yay!

I “spoke” with Dr. Kaylie today.  Really I emailed him.  I got very upset when he emailed me back and said that these questions had to go through the nurses so I needed to call in the future….this after I just said in the email that I would have called but I can’t hear on the phone and Stuart hasn’t had time.  Ahhh! I felt like…OK, you are my ear doctor you know I can’t hear…after the mess with the ASL class I just broke down and sobbed.  I wrote him back that I would never email him again, and he could have told me that before.  yes, I was a bit abrupt.  Then I proceeded to write him a formal letter telling him how I didn’t feel like I was being respected…I started to send a copy of the letter to my therapist for her feedback when I got another email from Dr. Kaylie, saying I had been no bother, and it is easier for him to get the email directly but there have been new rules and regulations put in place that they have to follow.  Well, take the wind out of my anger.  I’m still a bit miffed, but I need to be aware, he’s a very busy doctor and I’m probably overly sensitive especially right now.

In the original email he said I should probably talk to Dr. Gray about getting another LP to test my pressure.  And he wants me in to see Dr. Atkins (the neurologist that specializes in headaches), ASAP.  So Stuart will be calling Dr. Gray’s office to see about another puncture, and calling Dr. Atkins office to see about getting on a cancellation list.

Ok, that wasn’t too much whining…

but I just feel so beat down.  Every time I think I’m getting a bit better….shit hits the fan.  Unfortunately, sometimes more literally than others.

I did have another yucky bowel thing go on today.  I woke up feeling a bit better today…not spinning first thing.  But still slosh head and simply not feeling great.  So I decided I’d rest today.  (as if I could do much more).  So I’m on my computer and I feel the need to go to the bathroom, nothing urgent.  I like to play solitaire on my Kindle when I’m in the potty.  When I walked in the bathroom…about 5 feet from my bedside, I noticed my Kindle wasn’t there, I walked back to the bed to get it and all of a sudden I no longer simply needed to go to the bathroom….I needed to be in there NOW!  So I ran back, and I felt it was coming out….I started pulling down everything and right before I got my butt on the toilet there was a big SPLASH!  Just one second sooner and I would have been covered in crap.  I was still in there a while, so it was far from over, but I think I’ll be listening to those slight little feelings that say…hey you need to go to the bathroom sometime….knowing they mean…Get your Butt in the Bathroom NOW or you are going to be very embarrassed!

My emotions were so raw today, my physical self isn’t cooperating with me, and I almost crapped myself.   Stuart said, “it can’t get much worse”.  I was startled and said, “Oh yes it can!  and I have to always remember that!  I could be worse.”  (maybe he just said that for me to remember that..either way it worked.)

So after a long day of mental exhaustion, hours of crying,and head pounding I’m ready to say: I give up for the day.  As Scarlett O’Hara said “Tomorrow I’ll think of some way . . . after all, tomorrow is another day.”  But tonight…I will rest!

And my darling husband has gone to get me Vietnamese Chicken Salad Rolls from PeiWei.  I’m a lucky girl.

Of course, he may be doing this because Penelope is back in the hospital…hopefully not for long, they have to control her headaches.  So her husband isn’t cooking.  He has been a wonder to have here.  He’s been cooking nearly every night.  Good food, and good for you!    Unfortunately, Stuart hates to cook.  He’s good at eggs, frozen pizza, and macaroni and cheese.  He’s actually a pretty decent cook when he wants to, but he hates it really.  And after a long day of caring for me and working….I don’t blame him a bit!

He may also be doing it because I insisted on cooking some last night…at least help by doing part of it.  It was the second time this week I almost caught the house on fire!  This time I set a dish cloth on fire!!  A few days ago I thought I turned a pan off and turned it all the way as high as it would go!  The house smelled for a couple of days!  Ruined my favorite pan!

So I’m not allowed to cook at all until I’m not slosh headed any longer!!  I know, I thought I could do it…and I’m normally pretty good at figuring out what I can do.  Plus, cooking last night Stuart was right there cooking too….glad he saw the flame!  *an embarrassed little giggle*.

May we all feel as well as we possibly can!

 

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

On By WendyIn Chronic Illness26 Comments

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

The Good

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

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

The Bad

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

The Ugly

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

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

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

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

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

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

 

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

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

Living with Bipolar Disorder.

On By WendyIn Chronic Illness20 Comments

I would like to write more about my other chronic illnesses, not just Meniere’s.  It’s just that Meniere’s has ruled my life for a long time now.

Today, I’d like to discuss what it means for me to live with Bipolar Disorder.

First I’d like to explain there are different types of Bipolar Disorder.  (Formally known as Manic-Depression)

Bipolar Painting - J FLoRian Dunn artist (http://fineartamerica.com)

The following definitions of the different types of Bipolar Disorder is copied from the Mayo Clinic website. You can find the entire article here: http://www.mayoclinic.com/health/bipolar-disorder/DS00356  It’s a very interesting article if you want to know more about Bipolar Disorder.

“Bipolar disorder is divided into several subtypes. Each has a different pattern of symptoms. Types of bipolar disorder include:

  • Bipolar I disorder. Mood swings with bipolar I cause significant difficulty in your job, school or relationships. Manic episodes can be severe and dangerous.
  • Bipolar II disorder. Bipolar II is less severe than bipolar I. You may have an elevated mood, irritability and some changes in your functioning, but generally you can carry on with your normal daily routine. Instead of full-blown mania, you have hypomania — a less severe form of mania. In bipolar II, periods of depression typically last longer than periods of hypomania.
  • Cyclothymic disorder. Cyclothymic disorder, also known as cyclothymia, is a mild form of bipolar disorder. With cyclothymia, hypomania and depression can be disruptive, but the highs and lows are not as severe as they are with other types of bipolar disorder.”

There is much more to know about Bipolar Disorder, but I won’t bore you with tons of details when you can look them up.  I know most of my readers like to research things.  This post is more about my experiences being Bipolar.

I have Bipolar I disorder.  When I would have an episode, it disrupted every part of my life.  I lost jobs, relationships, once I lost the place I was living, and I almost lost my life more than once.  During my episodes I would have periods of lost time.  Once, I couldn’t remember almost a month of my life.  Most of the episodes when I lost time were episodes of mania.

The depression episodes, sent me into the deepest darkest caverns of despair.  I was convinced no one cared, and the world would be better off without me in it.  I was in such agony, and couldn’t see any way out of it.  I thought of suicide many times, and attempted it more than once.  One time I came very close to succeeding.  I was involuntarily admitted to a mental hospital for nearly 3 weeks.  My best friend of 9 1/2 years and roommate decided she couldn’t take it and moved out the day I was released from the hospital.  I lost my job.  There were a few jobs where I lost control, was convinced my co-workers or boss were out to get me, and I walked out.  With nothing to fall back on.

The mania was at times sweet.  (this causes many not to stay on their medication, they miss the high of mania)  I would have creative binges.  I would paint for days on end, often not eating or sleeping.  But it had extreme down sides.  While in a manic state I didn’t think anything could hurt me.  I tried drugs, I had risky sexual exploits, I spent money I didn’t have…  During one manic episode I bought a Jeep, had the people at the dealership take the top down before I left the lot, and then drove to Washington, DC to meet someone I’d only talked to on the phone, or emailed.  He did work for the same company I did, but in a different city.  No one knew where I was going.  I was lucky, when I think of what could have happened, I shudder. (BTW – it took me a long time to figure out how to put the top on my Jeep) I would get credit card bills for things I didn’t remember buying.  I loved to treat people when I was manic, and I loved to buy gifts.  I would meet people who knew me, but I didn’t remember them.  By the time I found out I was Bipolar, I was facing bankruptcy.

At times I did what’s called rapid cycling.  I’d be low one moment and high the next….over and over.  It was mind boggling, and very scary for others around me.  I couldn’t keep friends.  Mania can turn to anger quickly.  I pushed people away, sometimes during awful fights, when I’d say things I didn’t mean.  I was cruel.

While depressed I was convinced things would never get better.

I was originally diagnosed with Bipolar disorder in my mid 20’s, after a suicide attempt.  Then a year of two later, I was told they were wrong, all my symptoms were caused by hypoglycemia.  Depression set in and  I was then diagnosed with clinical depression, and put on antidepressants.  These sent me into a major episode of mania.  I was taken off the antidepressants and told I had anxiety disorder, with another medication change, and another attempt at suicide.

This roundabout when on for some time.   One night, I cut myself numerous times trying to get up enough nerve to cut deeper.  Instead I called a suicide help line, and ended up being committed to a mental hospital.  This was the best thing that ever happened to me.  Even though I was once again misdiagnosed while I was there, with Borderline Personality Disorder, the group sessions were very helpful and I was now in the system.  This helped me find a therapist and psychiatrist who understood, and helped me.

After getting on the right medication, my life began to normalize.  However, I had learned behaviors to overcome.  I’d been undiagnosed for so many years, I only knew how to react to situations as I would before. I over reacted to everything.  Not to the extreme I would before, but I only knew to run or fight when confronted with strong emotions.  I did not know how to have healthy relationships.  Finally, after many years of therapy I feel I am the person I want to be.  I don’t blow up (most of the time).  I have good relationships.  I understand that much of what I did in the past was out of my control, but how I live my life now is my responsibility.  And that’s OK with me.

I wanted to add, this is one reason having PMDD/PMS disturbs me so much.  I’ve worked very hard to understand my emotions, and control them.  When I have these hormonal symptoms I again feel out of control, often so quick to anger it scares me.   Scares me more than I can explain.  I never want to the person I was before.

As of this writing, I’ve been stable for over 15 years.  (with only a few minor episodes when my medication needed adjusting.

I started this post on January 3rd.  I do not hide that I’m bipolar.  I’m quick to talk about it, to share my experiences so others may get help.  However, this was a difficult post to write, remembering who I used to be, the people I hurt, the self-destruction…  Mental illness and suicide still carry a lot of stigma.  Let’s start talking about it.  We need to make sure people are not afraid to seek help.  We need to help everyone understand that people with mental illnesses are still people.

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

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….

 

 

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