Monday, November 1, 2010

ENT Visit

Hello and Happy Day after Halloween!

Just an update. It may be short and sweet, we will see.

The Halloween Fairy seems to have given me a bladder infection with all the bells and whistles (burning, fever and chills - Havent had one since my 20's) and My hands have been giving me a run for my money these past few weeks, so typing is a tad more difficult than usual. I have stay puff marshmallow fingers with Mickey Mouse I keep hitting the wrong letters. But, hey - that's what spell check is for, so onward.....

Well, went to the specialist ENT so I could get some information straight from the horses mouth with regard to my ear pain and vertigo.

My Rheum had eluded to an Auto-immune inner ear issue, which I of course would be prone to with Scleroderma, so to be sure I decided to bite the bullet and go to the ENT.

Let me start by saying it was on Friday, before Halloween so the staff was dressed up in costume garb. They were all lovely, the office was brand new and just gorgeous and I was quite content in my little room waiting for the doctor.

I was reading the Ear Poster on the wall trying to find the crystal thingy's everyone says dislodges and causes vertigo when the door opened and some young good looking kid in a red Cardinals jersey walked in. Well, I turn around, see him and think he walked into my room by mistake until he extended his hand and said "I'm Doctor *** - Nice to meet you"

Swear didn't even hear the guys name (fore-shadowing) because I was so shocked at; A: How young he looked in that red jersey and B: How cute this guy was ....

After I stuttered my name and managed to shake his hand, I brought myself back to reality to get the scoop on this Vertigo garbage I hope to never get again.

Previous to being brought into my little exam room, I had to take a hearing test. It was kind of neat. I have never done that before. I sat in this little glass booth with earphones on and had to click this Jeopardy style clicker every time I heard a beep.......

Well, Dr. Cutie broke the news that (aforementioned foreshadowing revealed) I evidently tanked the low frequency hearing test in my right ear. The same ear that causes me the pain, fullness and one I want to shove a pencil into.

Apparently the loss of low frequency hearing in my right ear is due to nerve damage/death. Good to know...... but as he went on to ear fullness, loss of hearing, nerve damage and episodes of vertigo painted a pretty clear familiar picture to him.

He said I almost text book described an ear disorder called Menierre's.

When I told him my witty little self created term "Verg-igo" - of always feeling on the "Verge" of vertigo for about 2-3 days after a vertigo episode, along with the subtle nausea and dizziness post episode and the episode itself lasting about an hour or two where I needed to hold on to walls and furniture to stand upright - He said Bingo!

My history and his findings pretty much suggested this Menierres thing, but the condition itself is one of exclusion - so before he can "officially" diagnose it, he must exclude other causes of the nerve damage, hearing loss and vertigo such as inner ear tumor, inner ear pathology amongst a few other things I have forgotten. He said the other concerns are pretty rare and he does not think he will find any pathology, but that protocol suggested that I need to get an MRI of my ear to rule out any pathology and balance testing.

When I asked if this Menierres is an Auto-immune inner ear disease as suggested by the rheumy, he said not in and of itself - however, auto-immune disease CAN cause it. The condition itself is of course incurable and the cause is unknown (Story of my life!) but there are medications that can prevent further future episodes of vertigo and hope halt further hearing loss.

I guess a low salt diet is prescribed (Oh No............) and a water pill is given, along with something else I can't remember (Sorry) to reduce fluid over load in the ear which they feel is the cause of the pressure on the nerve and cause of vertigo.

I asked about the crystals the doc mentioned last year and everyone talks about and he just shook his head saying that Benign Vertigo only lasts a few second to minutes and Never over 15 minutes - so any vertigo that lasts longer than 15 minutes and does not resolve with position change is considered conditional and a pathology should be sought - so, we are seeking.

I get the MRI done on the 3rd of November (so not looking forward to that -xanax here I come) and I get the balance testing done on the 12th.

As always I will keep you posted.

I must admit though, that after leaving the ENT office and the aura of cuteness wore off, I went through an array of emotions. I thought I had already went through all of my stages, but not that day because I was angry!

I was angry and needed to vent so I called my friend and told her the news.... and it's like old hat now. I mean, what else. It's almost embarrassing. I feel as if people just pacify me now - almost as if its "Now What" or "What this time" - eye roll....

I give this huge speech that I am angry, and the Big S has now allowed my body to gobble up my ear nerve and it was like old news because there is Always something. We went from my news, to oh and subject change.

I know my friend loves me, at least I hope? I think? Hell, I don't know - Nothing is safe with this stupid disease and I already lost one friend over it. My biggest fear is talking about everything I feel, lost, fear, and the things that are always changing. I don't know what is off limits. How much is too much.

I'm sure having a sick friend gets old. I'm sure having to hear about the latest Whoa gets old. I'm sure it can be annoying - but its not like every single second of every waking hour I talk about it.... but there are times when I need to talk, to vent and be angry that some invisible force is stealing the life from each of my organs. Eating me up on the inside. Gobbling my bladder, intestine, liver, nerve sheath and now my ear and hearing and I am mad about it! And scared about it sometimes.... and I want to know there is a place safe enough that no matter how many new things, symptoms, findings, diagnosis pop up - I can talk about it without fear. Fear of more loss. Of losing another friend. My credibility.

After I spoke with my friend, I must have gotten sad because I started to cry about yet another loss I have to absorb, so I called my sister - who reminded me that this continued laundry list of new diagnosis and new findings was the nature of THIS disease, and anyone who loves me knows that....

I felt a little better, but I know it gets old for others. I just hope that they in turn try to understand - If it gets old and annoying for you, think about how I feel!! Its happening to me. Ba Da Bum...Ching!

Who knows... Like I always try to say - There is a lesson in everything and I am finding Karma in a lot of things too. I had a neighbor who had Chronic Fatigue Syndrome. Stay at home mom and every week she had a new infection and was always calling with "something" and I must admit - I'm sure I rolled my eyes a few times. I'm sure I pacified her a few times and probably even "missed" her call every once in a while. Karma. It'll find ya!

I really try hard now to try see things from every perspective and I am working on letting things go and accepting things without expectations. I have always considered myself a compassionate person and always felt I empathized with others.... but my perspectives were probably more one sided. Mine...

Now instead of rushing to judgement, I try to understand the other side and accept/absorb things without getting hurt. What a lesson and learning curve.

I have always tried to see the why behind the what.... I mean people don't start out saying, Boy I want to be a homeless addict when I grow up or Wow, you know what I think I want for my life plan? Teenage pregnancy.

There is a reason behind what people do, what they become. The Why behind the What. But I am trying to take that philosophy a step further. A step more intimate and close to home.

Anyway - Back to my damn dead ear. Well, the hearing I have lost is gone for good. Bye Bye Birdy. I could have continued progressive hearing loss or it could stay unchanged. That remains to be seen, and if it is Menierres - the meds will help. The good news is, that the degree of hearing loss will never cause a complete deafness. There will be options of hearing aids or cochlear implants if things progress that far. So that is promising!

With regard to if I knew I had lost hearing? Good Question. Well, I know my hubby has been making fun of me for the past couple years with how loud I watch the TV. Always asking if I was sharing our HBO with the neighbors. He also teased me about talking really loud on the cell phone.

So who knows......I guess maybe I have but it just didn't register?

Maybe nagging and whining will turn into low frequency, then I won't have to hear them anymore...

Anyway - not to be be anti-climactic  - but my hands are killing me, so I better sign off for now.

Be Well!!

Love ~



  1. I know exactly how you feel. No one knows that I have S except my husband. I just can't take the reactions of others. There seems to be something new with me every day. I am SO tired of this. Are you taking the monthly IV?

  2. I ran across your blog accidently. I have Menierre's (I wear hearing aides and am always dizzy.) LoL! I was diagnosed about 15 years ago

    My daughter was diagnosed with Scleroderma 8 years ago. She had very early onset like you. She moved back home with Us(her dad and I).. she is very sick most of the time now. Takes major amounts of Meds..

    We live in Waddell Az. 3 coincidences in finding your blog..

  3. Hi Anonymous!!
    I give myself weekly methotrexate injections and I am still considering the monthly IVIG.

    I'm scared. I am no neurotic about meds..swear, I am a female Woody Allen when it comes to trying a medication. I can't read about the side effects cuz then I will worry about getting them - but with that said, I am actually considering very seriously now.

    I went for a walk the other day and half way through it, it kept feeling like my legs were going to buckle and give out from under me. It felt like they were kind of, but I'm not sure if that was just a sensation or reality. I'm sure I looked like a real gym - I was doing my own Hip Hop Pop and Lock the rest of the way home..that or people just thought I was rehearsing for a Thriller dance in honor of halloween!!

    But after that episode and some reflection, I just thought - when you start to become afraid to even take a walk around the block - then its messing with my quality of life, and I need to play ball. I think I will make an appt this week to discuss starting it - although I am scared!!

    Do you take it? If so, can you give me the scoop about it? If not, what do you take?

    Also - do you ever feel like you "Lock up" and get really stiff after sitting or standing in place for too long now? I swear, it just started over the last few months, but it seems to be getting worse for the moment. Very Weird.

    Hope all is well with you.

    I am sorry you do not have anyone you feel safe enough to share your diagnosis with. That is disheartening and sad. It is very lonely.

    I Sometimes wonder if it is almost better IF I dont share with my friends..but then, I think, if they are friends there should be no stipulations. ""We are friends only if I dont inconvenience you by talking about my annoying disease.""

    The nature of the disease and the new presto change-o every day are part of it, albeit, annoying - but part of it and therefore part of who we are now.

    Who knows what the right or wrong ettiquette is - I just hope that your needs are getting met by sharing with your hubby. I hope you are happy and doing well - and I love hearing from you so please write back and give me the scoop!

  4. Hi Grammee!!

    Okay, first - How cute is your posting name

    and second, I am just so happy that you accidently found my Blog! Waddell - seriously!! Wow!!

    I would love to meet you and your daughter some day if you are open it.

    Also, if your daughter is interested, there is a support group that meets monthly at Arrowhead that I can bring her to and introduce her to a few more Scleries if she would like.

    If you are open, willing and able to meet for lunch, I would just love that!!

    You said that she doesnt feel well very often, and I am so sorry to hear that. Please let her know that she is welcome to contact me anytime if she would like to talk, vent, compare notes, scream, cry, whine, complain or just chat - I am here and literally just a call away.

    My email if she would like to contact me is

    Thank you so much for writing and sharing.

    I have to go in for the dreaded MRI of the ear tomorrow, which means there is a xanax with my name on it tomorrow morning. Cannot stand MRI - so claustrophobic - but if it will get the ball rolling on the whole ear thing, then I guess I should buck up and put on my big girl pants and go.

    How do you feel with your menierres? You said you felt dizzy all of the time, wow. I am sorry to hear that as well. I see that you have hearing loss as well. Was that progressive?

    You sound like you have a great spirit and a wonderful personality, so I hope that you are happy and well.

    I truly hope to hear from you!!

    Take Care Grammee!