He forgot nearly everything about me. Why in the world did he ask to see me?

Now, I am spiraling into a state of depression. I’m perseverating on all the money I spent for the visit to Hopkins plus every damn stupid thing I have done recently and not so recently. And I cry. Because that’s what I do. Uncontrollably.

So I play music to mask the crying.

As you read this, please know I understand that there’s nothing much to say/reply in response to this sad entry. It’s okay.

We’ll make it through.

Best,
-Q

After re-reading this post on Monday, I took proactive steps to get things taken care of.

OK – firstly, I cried almost all day.  But through the tears, I managed to act and make decisions.

1. Which Neurologist should I see?

The only neurologist I have had a good relationship with is Hopkins Doc.  My current insurance covers him..send an email…get a response…Doc wants to see me right away… next week….make travel, etc. work…worry about re-entering the world of patient-doctor relationships….re-opening the book of My Medical Misadventures.  Make travel arrangements anyway.

I pay into our health insurance so that we only have a small co-pay for a visit and nothing for tests, diagnostics (MRI, CT, etc.)  With my Hopkins Doc, this could really be meaningful.  Make some progress?Or setting myself up for disappointment.

2.  Hearing Loss / Never Ending Ear Infection

Saw ENT.  Presently on oral antibiotics and antibiotic ear drops.  Still draining from the ear.  Still annoyed.  ENT says there are no real complications of this problem other than the hearing loss.  He recommends I get the new hearing aids so they don’t get ruined by the drainage.  Nice.  Sounds like I’ll be living with this forever.

I’m back to being an active patient.  I don’t know how I truly feel about this.

I do know that I haven’t even touched Forgiveness.

I know this is all tied together in one way or another.

Thanks for reading as I sort it all out.  Like a big ball of yarn made up of a few different yarns.

bes

]]> http://medicalpuzzle.com/2012/05/10/back-in-the-exam-chair/feed/ 6 queenofoptimism http://medicalpuzzle.com/2012/05/08/are-you/ http://medicalpuzzle.com/2012/05/08/are-you/#comments Wed, 09 May 2012 03:08:00 +0000 queenofoptimism http://medicalpuzzle.com/?p=1691 ]]> Are you getting….worse?

Several people have asked lately.

The answer is yes.

People are hoping for a No.

I wish I had more of an answer.

Are you…okay?

I wish I had more of an answer.

I say:  “I guess I’m coming to grips with things better”

I’m so sorry.

Don’t be.  Everyone has their own things that they are dealing with.

Are you?

Best,

-Q

Btw – Mr. David Tutera is a talent not often seen.  He also often says, “Never stop dreaming.”  Precious.

I didn’t even have a dress. But anyway…

I can tell myself that this bout of crying is because of love – the sharing of vows and the beauty of all of it.  And I do cry at

weddings, even those of strangers on television.

I find myself crying at weddings more frequently these days.  I have regrets about what I missed with my wedding.

I find myself finally admitting that I cry too much.  No more sweeping under the rug.

My crying is a problem.  IS a problem. 

Sure, I’m tenderhearted.  I’ve always been moved to tears at times when I have been extremely happy or sad.  But the crying is now inappropriate.  I acknowledge the negative affects on my job.  In my family, “Mom’s crying again.”  And there’s nothing left to blame.

It’s not depression. 

Dr. PCP and I have discussed the crying.  My answer has always been, “Sorry, for crying, Doc.  It’s  just that I can’t let go at home.  can’t let go at work. You, know?”  “Wow, and you’re on such a high dosage of antidepressants.  It seems crying would be impossible.”  Together, we would blame the Prednisone.

I never let her know when I started to cry frequently at work.  And at home.  And more frequently at home.

I’ve not yet let her know that I’m crying more since I’ve been off of the Prednisone for 3-4 months.

I’ve been blaming emotional lability to some people in my circles.  And I didn’t even know much about Pseudobulbar Palsy but I think there’s something there.  Enough to get me to tell Dr. PCP and enough to get me in the chair of a Neurologist.  Again.

 My Hearing Loss

I cry because of my hearing loss.  It makes life so hard.  I hate wearing hearing aids.  I hate how much they cost.  I hate that they have a

Hearing aids are fun and lighthearted! Don’t cry!

lifespan of 3 to 5 years.  I hate that I have no one to talk to about my loss – a friend who also experiences it.

I presently have $1500 in hearing aid benefit dollars from my health insurance.  With some extra incentives, I can get some great quality aids (2) for a total of close to $3,000.  It’s a great deal – like buy-one-get-one-free for a better quality aid than either that I have right now.

But I have a chip on my shoulder about my hearing loss.  And spending big sums of money.

My conductive hearing loss is largely due to childhood neglect.

My husband is super nervous about spending and debt.  Not basic spending but big sums of money where you don’t end up with a tangible item.  This is why there are huge regrets around our wedding and beginning of marriage.  That’s why we don’t vacation.

The Queen is mad

All of the above pisses me off.   I want to spent the close to $3,000 on something that creates happy memories.  Instead, I’m forced to spend it on devices to give me sound.  Something so many people take for granted.  Never even think about – the possibility of losing their ability to hear and therefore having a communication disorder.

The solution? 

Forgiveness. Forgiveness?

It’s all I’ve got as an idea for a solution.

And I need a lot of help – I don’t know where to start with this deep subject.  I’ve work on it therapy and have learned forgiveness.  But this is bigger.  This is something I believe I need to put my whole heart into.

I need to forgive myself first so I can forgive others.  The price.  The cost of figuring out how to forgive.

Everything is so damn expensive.

Thank you for being part of this.

Best,

-Q

http://www.internationalforgiveness.com/

PWD = Person with Disabilities

I managed thanks to many things and people.

1.  Help at the airport

If you have air travel, ask for help – specifically for a wheelchair.  You will get help getting through security:  someone to hold your hand, someone to help get the items in the gray bins faster than you

In looking for some wheelchair articles, I found this. I lived along the Atlantic Coast for most of my life and thought this was an impossibility. Bravo, Ocean City, Maryland. http://oceancitymd.gov/ada.html

ever could, and some VIP treatment along the way.  When I use a wheelchair, I limit my amount of walking and therefore have an extended ability to walk later on in the day.  I tip my wheelchair assistant anywhere from $5 to $20 depending on a combination of the following: (a) the distance of help; (b) the level of kindness; (c) the offer to stop along the way to the gate; and (d) their help in making sure a chair is waiting for me at my final destination.

The funny thing about help at the airport

This flight had a stop on the way in and on the way home.  When changing planes there is chaos and both times, the person with the wheelchair did not recognize me and instead picked up someone else.

So, here’s a note for travelers:  If you need a chair, make a request or you are going to take someone else’s requested wheelchair.

And, here’s a note for Wheelchair handlers, don’t assume people with grey hair request a wheelchair.  Sometimes it’s the younger lady who colors her hair and is fairly attractive.  (smile)

Special note to self and anyone coping with physical disabilities:  Your heart breaks as you watch people nearly or at least twice your age walk perfectly normally as they board the aircraft after the long walk through the airport.

2.  Self Help

I made the calls to find out that no wheelchairs or scooters were available at the conference or hotel.  I made the calls to rent a mobility device.

Me:  “Hello, I’m calling about renting a mobility device.  This is my first time…”

Representative:  “We don’t rent cars.”

Me:  “I need a wheelchair or scooter.  I ‘ve never used one and need advice.”

Representative:  “For you?”

Damn this sweet child-like voice I was born with and live with.

Note:  can’t get a rental on a weekend day!  Have to wait until they open on regular business days such as 9:00am to 5:00pm.  The conference started early and i had to work out where and when I would greet the wheelchair rep based on the schedule of the conference, wheelchair rental place, and information desk of the conference.

Tip for a mobility device newbie:  Offer the company information about your needs, height, and weight.  this helps them pick out a good match for you.

I’m in love with the Electric Wheelchair I rented.  More about that in another post.  but I will say, I think I smiled the entire time I used that thing.

3.  My Tablet device in lieu of my work computer - life saver in terms of difference in unwieldiness and weight when dragging belongings through airports, hotels, conference areas and the like.  **Note:  I could have benefited from pre-planning to make sure I had work docs I needed by using tools in my work email or apps for productivity.

4.  Cola on ice.  This is what my body wanted and compared to most things, it was relatively easily accessible.

Summary

I managed to get a hotel room in the booked conference hotel by calling and checking over and over again before the trip.  TIP FOR BUSINESS TRAVEL:  The minute you think yu may be going to a business conference, put your worry aside and book the *&%$^ Hotel.  Most hotels have generous cancellation policies such as cancel 24 hours before expected check-in OR the same day as check-in.  Therefore, I didn’t rent a car.

Food was a nightmare but I’ve learned to survive on coffee and saltines.  Plus, the cola and ice as mentioned.

Sadly, people look past your face when your in a wheelchair.  Even when you have a big ‘ol smile on your face because you’re zooming through crowds.

On the other hand, there are some people who are super nice and helpful.  And, of course, the “You’re so young” crown can make this aging 38 year old feel a little younger.

We did it.  Yep, WE did it.  You and me.  Me and you.  We can do just about anything.

Thanks for reading.

Thanks for caring.

Best,

-Q

Your thoughts?

https://www.facebook.com/NovaMedProducts/app_272225889526659

I’m not eligible.  My son is only 7 so his nomination won’t count.

Mobility Fashionista. Part of me thinks – wow, good for this advertising.  The other part of me wants to curl into a ball and wake up with Rip Van Winkle.

I’m glad to be attending.  The subject matter has lead me to new career dreams and goals.

I just am not sure how I will manage.

I could have used this opportunity to share my planning tips, etc. with readers of this blog and those who, like me, are seeking advice.

But I didn’t.

I’ve been living in fear and denial instead.  There are several legitimate reasons I can give for why my planning has been poor and null but reasons aren’t going to help me now.

I have to figure this out.

Undecided on where I will stay

Hotels physically connected to the convention center – BOOKED

Hotels in the city of the conference  – I made reservations for 2 but upon full review,  they aren’t going to work for me.  CANCELLED.

Hotels in the neighboring city that is a mid-size city in its own right – 2 are now BOOKED by me.

I’m not sure what is best for me:   How much walking is there from lobby to elevator?  What do visitors say at Trip Advisor and elsewhere?  Photos.  Where are the current photos?

The majority of my concerns are related to my mobility but, I also have a really tough time staying a creepy, dirty places.  Especially alone.   Fatigue from not sleeping because of creepiness will add to my limping.

And, limping leads to a complete inability to walk.

Taxi Cabs

I finally found some real-life reviews – Taxis in this area are not plentiful and neither is any type of public transportation.  How will I get to the conference?

Sedans/Town cars

I can’t find out much at all about what’s available in the area.  All sites lead to weddings and Limo limos instead of limo service.  How will I get to the conference?

Rental Cars

You may recall from my last rental car experience (a CRASH less than a mile from the rental service) I’m not latching on to this idea real quickly.  How will I get to the conference?

Other considerations:  parking costs at hotel, parking costs at convention center, and where rental car drop-off is in relation to where I need to go to the airport for my early return flight (6:00am)

Food

Queen's royal Quinoa ("Keen-WAH")

I have branched out from Quinoa a little bit this week; however, I don’t know of any other bland foods with the awesome protein content. Quinoa is not a restaurant menu staple.

Walking

I almost barfed when I looked up and saw the size of the exposition center – meeting with vendors is important for me at this conference.  How am I going to do it.

How will I make it through the conference?

I have to figure this out.

Best,

-Q

On Thursday, via a late night email, I found out that I am not allowed to tell you.  Or anyone!  At least if it has to do with that 4-letter word beginning with “w”, used as a verb and a noun, that describe how I personally generate revenue. I’m not kidding – not allowed to speak of it to anyone whatsoever.  I don’t think they know I sometimes write about it.  Oh well.

Hearing Aid

Yep, dog was eating it this morning.  I was on the phone, took it out and was holding it in my hand until my jaw** and hand dropped.  It still works.  Last time I posted, I was getting ready to see my new ENT and Audiologist.  I did both.  Hearing is a little worse.  And, I am having a recurrent middle ear infection.  I have an eardrum tube which is supposed to ventilate the area and make an ear infection impossible.  Old ENT Doc and Dr. PCP said it was a sinus infection draining through my ear.   **reminder to explain jaw dropping another post

Nope.

I’m the 1 in a million person with their 13th set of tubes at my age AND the 1 in a million person who gets an ear infection anyway.  That’s what this ENT doc said.

My guess is I am also the 1 in a million person who can’t get rid of the damn ear infection either.  It’s still training.  And draining.  And I can’t hear for shit.  It drives me crazy. C R A Z Y !!  And being a 1 in a million – there isn’t a damn person who can relate.

Hearing loss is considered a communication disorder and the way it disrupts my communication with others makes me want to hide and bow out of every person-to-person interaction.  Even written.  <— I’m not sure why.

But I haven’t gone back to ENT doc for him to vacuum out more infection of the ear.  Yes, read correctly.  I just keep using the drops i was given.

I haven’t found an Audiologist Hearing Aid provider that accepts this insurance I have for an unspecified period of time.  The life of hearing aids is 3-5 years.  I have a 7 year old one and a 3 year old one.  I am hoping for replacements while supposedly given the benefit.

Newer Developments

I have lost my appetite.

• I eat Quinoa (plain or with some fruit or vegetables) for nearly 3 meals/day.
• Dr. PCP said this is okay because it has protein and nutrients, etc.
• My explanations are:  The worsening of my Reflux and/or No longer being on Prednisone.
• It could be the new pain treatment regimen, maybe?
• I fit into some clothes I have not worn for about a year but I am not having the big weight loss I want.

Thyroid Nodule

• About same size as 2009.
• I am not seeing an Endocrinologist about.  Why?  I deem it insignificant and not worth my time.

The Problem, the Muscle Leg + Arm Walking Thing

• It’s now officially bilateral – no more unilateral left side problem anymore.  It’s still worse on Left but bad on Right.
• Chronic pain management helps.  I hate when it makes me sleepy.
• I believe I have increased anxiety about this problem.  But why acknowledge it when I don’t have the time but do have anti-anxiety medication? (sarcasm)

I have a changed outlook

Sure, I’m still sarcastic.  Things are tough.  I mean, if i could tell you about it, you would flip out!

However.

I want a good life.  I want an OUTSTANDING life.

It’s hard to think of the future when there are all of these present problems.  But, I am trying.

I want to fulfill some dreams.  I want to challenge myself.  I want to do things I don’t think I can do.

Right now, this does not include running a marathon because I physically can not run.  But maybe I start going for more walks with my cane.

I also want to go places.  See things.  See people.   Achieve what I dream.  I want to feel more like me.  And first, I have to discover who I am now.  It’s helped me to talk to people who knew me pre-illness and who I haven’t seen in a while.  They remember happy times that remind me that happy times can be mine again.  Different happy times, though and that’s what I have to focus on and figure out.

Wishing you the best and thanking you for reading and caring.

Sincerely,

-Q

If you get a chance, check out this guy Matt who commented on this blog and has a video blog www.youtube.com/user/aceblade

From what I’ve seen, he’s fun.

So much to say. So much to work out and reconcile in my thoughts.

1. Why is it so difficult to get information about local therapists? Searching my insurance, I get a name, address, and phone. I want to know the name of the facility where they work – not easy to find for the exact reason I want to know. I don’t want a decrepit old facility specializes in wackos. I want something more on the boutique side of things. But there is no way to know. My hope is to see someone for individual therapy is the city where we live at a satellite office of the marriage therapist we went to when son was just an infant. Chances are, there will be less scumbags and stained chairs.

2. Why am I pursuing a therapist now? If you read this, you know the obvious reasons. Also, it’s the phobia that is making things extra challenging. My fear of saying the wrong thing therefore I fear some conversations and social situations.

3. Liquid will not stop draining from my ears. Dr PCP took a culture last week and I met my new ENT this coming week – and Audiologist, too. No doubt that my hearing is worse. Wondering if this doc will also agree to the Oosclerosis diagnosis.

4. The fear causes me to dislike myself. I’m not living up to who I wish to be. I have little in terms of a planB – I used to always have planB.

5. Even so, I fearfully keep sticking up for myself at work. No more bullying! Is about getting the job done not making others feel badly. It’s hard to keep up the courage.

6. It’s been nearly 3 years since my thyroid ultrasound and biopsy. I was supposed to get both done again the following year. I chose not to. It’s now been nearly 5 months since I took my levothyroxine regularly. Is that why I am exhausted? I also want new Endo. We’ll see.

It’s time to turn off the lights. Panic about how I won’t have enough time to get ready in the morning but I will still choose to press snooze.

Best,
-Q

A group of people who say I must be fired or they will no longer give their time to the organization.

I’m a pathetic leader they have no faith in.

They could have found someone better.

I’m completely incompetent in all I do.

These are not sad comments that have come out of my mouth. They are from people who want me gone from my job. Just because. I have reached and exceeded goals. Luckily, several people spoke up on my behalf. Yet more have torn me up.

Courage is all I’ve got. My only chance is to help the provost see me the way the assoc. provost does.

During this, I feel what I can only describe as agoraphobia. I don’t feel like I can talk to anyone because I am humiliated. As a leader, I risk this – people unhappy with me. Do I have enough courage to keep being a leader?

Don’t ask “why me”? Don’t go down without a fight.