I could be wrong because I’m out of touch with the whole entire world, which is true.  However, I refuse to accept that my belief is out of egocentrism or megalomania of relevance.  It’s just that this seems like a ridiculous thing to be doing in my self-imposed time frame.  I’m pretty sure other people have done it.  Just probably not today with a deadline of today or tomorrow.

Today, on a Saturday, I searching both online and by calling businesses to see if I can get (before Monday at 9:00am) a meeting amplifier or convertible personal amplifier that can be a meeting amplifier.  There must be better terminology for what I’m looking for and I’m pretty sure that I am closest to what I am seeking when I search with the words “hard of hearing.”

Why?

My hearing ability is getting worse.  I am unsure whether it is permanent or related to an infection or some other problem.  But ” it” (my hearing loss) is getting in my way.  More than usual.

I already wear bilateral hearing aids but mine are the bargain models ($1,500-$2,500) and they are not self adjustable.  I mean there is no volume knob on them.  Yep.  I can’t turn up my hearing aids.  And I am struggling to hear wherever I am.  I need to make an appointment with an Ear, Nose, and Throat (ENT) doctor but I haven’t yet.  The ENT docs are the gatekeepers to the Audiologists – the hearing test and hearing aid people.  I really need to do this.  Ans, as we all know, doctors have limited hours during the daytime and our employers give us limited time off.

Excuses aside, I need help.

Monday morning, I have an important meeting with an important person.  The acoustical good news is that the meeting is in my office: small and low ceilings.  The bad acoustical news is Dr. Important Person talks quietly and I miss half of the things he says.  Not only is he important, the content of this meeting is incredibly important.  He may or may not know that I wear hearing aids.  But even if he does know or remember, chances are he doesn’t prepare for the meeting with a note, “Raise my voice in this meeting.  Q is deaf.”   That’s good manners around anyone deaf or hard of hearing.  We’ll tell you if you’re being too loud.

In summary, I would love to have a discreet (but not stealth) device that can sit on my desk and amplify the other talker.  It could be made to look like a small conference call device and as the person with hearing loss, I could quickly introduce the device with something like, “this helps me hear our conversation better.  If you recall, I have a hearing loss.”

But instead, devices are ugly and worn by the person like a Walkman or a beeper or bluetooth phone headset.  That’s not the impression I want to make.  Plus, it leads to further discomfort because of the attention drawn by something like the devices in the photo.  attention = more questions.  When I have important meetings with important people, I am prone to nervous talk.  You know, non-stop talking when it’s the smalltalk part.  And like most nervous talkers, I don’t always choose the comfortable path.  “Have you been deaf all of your life?”  “Well, you see, my mother was a bit neglectful.  I mean it’s no big deal now but, well, then again it is what I call the legacy of neglect so I guess it does bother me…anyway, my hearing….”

Well, I can’t seem to find what I’m looking for through online searching.  It doesn’t mean it doesn’t exist but I doubt it’s something I can get in time for the big meeting.  I’ll try contacting deaf and hard of hearing advocacy groups.  They tend to have devices of all sorts and can likely steer me in some direction.

I can now spend the rest of my working on what I can say to request Mr. Important speak louder.  With any luck, this practice will prevent nervous talk.

As persons with chronic illness and/or conditions, we likely do things, need things, think of things or search for things not many other people in the world would readily think of, etc.  Care to share?

Best,

-Q

That’s the problem. I’ve entered in Anger phase in full force and I’m stuck like Gorilla Glue.

I’m referring to Kübler-Ross / Five Stages of Grief. Though the model was first described as a process of emotions for coping with dying, Kübler-Ross has extended the model to cover grief for any life-altering event including illness and the illness of someone close to you.

These are the emotional stages and according to the author and researchers who have further studied them, not every person going through serious emotional situations goes through each of the stages, the order is not the same for everyone, and it’s possible to get stuck in a stage.

Shock stage*: Initial paralysis at hearing the bad news.
Denial stage: Trying to avoid the inevitable.
Anger stage: Frustrated outpouring of bottled-up emotion.
Bargaining stage: Seeking in vain for a way out.
Depression stage: Final realization of the inevitable.
Testing stage*: Seeking realistic solutions.
Acceptance stage:y Finally finding the way forward.

I feel like last year is when I officially entered the stages of grief. In early 2011, I had ACDF surgery as recommended by my amazing Hopkins doctor. Following the surgery, I did not have all of the expect improvements. My Hopkins Doctor officially gave up on me. There was nothing he could do. No identified reason for why I have trouble walking and all of my associated problems.

I did Depression, Testing, Denial,a little acceptance and now – It’s been so bottled up, it’s exploding out. I’m angry, frustrated and the outpouring is so strong, I can’t hold it back.
Its ruining my relationships – no one wants to be around someone who can’t get it together.
I’m angry that my new job came with an unexpected twist of someone who finds ways to make things more difficult. I’m angry that I can’t deal with this well. i once was a person who knew how to manage this type of situation with class and in a way that would put an end to the behavior of this other person.

I’m angry about my hearing loss. something i have dealt with for years now has complications plus, my hearing ability is worse. i miss a lot in conversation. i’m mad that this is my life. I’m mad that

i’m not emotionally strong enough to keep the anger bottled up. I’m angry that I’m angry. it’s a newer emotion for me and it’s like a tornado – ruins everything in it’s path. i don’t know how to stop it. Depression is where my emotions would go. My depression seemed to hurt me much more than anyone else. My anger is hurting every aspect of my life and there’s no “normal” way to make excuses for it. What am I going to do? I’m so scared.

What emotions are sticky for you?

Best,
Q

I hear people describe themselves by the names others can call them:  Wife…Mother..Sister…Daughter…Cousin…Niece…Daughter-in-law…Sister-in-Law. 

When any of the above roles we have are strained, should we look for comfort in one of  the many other roles we have?

Boss…co-worker…room parent…patient…driver…public radio listener…business book reader…online shopper…bill payer…tax payer…disability advocate…relationship ruiner…

I want to continue this list but I’m stuck on relationship ruiner.  That’s who I am.  That’s what I do.

The relationship ruining is evident as this week closes.  If I wasn’t me – if I was someone else, my former boss would not have treated me the way she did.  Therefore I would not have felt the pressure to move on to my current job and would not have written the exit interview my other boss requested.  Writing the exit interview answers was challenging.  I had to think back about things I want to forget.  I want to forget because it would make life easier.  If I could just forget, I wouldn’t have to forgive.  I wouldn’t have to wonder “why?” – it would be almost as if it never happened.

The relationship with my in-laws is broken. Earlier this year, because of something I said and did when I was exhausted, I ruined the relationship. I believe it was broken from the beginning.  In fact, I sought out some guidance on how to fix it.  I haven’t taken the time to see a therapist so I looked for a reference self-help book.  I got 3 rules into the Mother-in-Law rules and realized it was hopeless.  I am hopeless.  I didn’t start things on the right foot and they may be a bigger problem for me anyway.  According to the rules, i should have been complimenting more; calling just to say hello; thanking her for giving birth to my now husband, etc., etc.

When I think of my in-laws, can I blame them at all?  Until I thumbed through a notebook tonight, I had forgotten that earlier this year, the relationship was further strained by my sister-in-laws and mother-in-law using the time that I said something I wish I could take back to go on a one month rant of all of the reasons why they dislike gave me.

One reason MIL gave: “She’s[me] always talking about my disability this.  My disability that.  Our next door neighbor Peggy Sue actually has something – she  has MS and you never hear her say anything about it…”

That was it.  That was enough to make me feel completely uncared for.  And, it was enough to make it impossible for me to attend Holiday activities with them this year.

What might I say or do that would make them dislike me more?  It’s an anxiety-producing proposition.  Why?  Because my disability is on my mind. What’s going on in my life is not things they want to hear about:

• I went to the Ophthalmologist this week.  My optic nerve is elevated so…
• I’m seeing a neuro-ophthalmologist is a couple weeks.
• I’m sure it’s nothing because if I acted like it might be something, I’m not being as great as Peggy Sue.
• Let’s see, what else…hmm… My left hearing aid is broken?
• No, no… you don’t want to hear about that either.
• Wait, um, Merry Christmas and thanks for giving birth to my husband!
• Oh, you’re right.  My problems are really hard on him…
• My blog is up for an award!  Yes, my blog.  It’s a, um no, it has nothing to do with Facebook.  Yes, I use twitter.  That’s not what twitter is about.  It’s microblogging.

…Twitter user…blogger….queen of optimism….office supply freak…person with vision problems…person with mobility problems…and many more…

What are your roles?

Best,

-Q

I woke up on Monday, December 12 with a dark red right eye. The redness comes with stabbing pain, blurry vision, tearing, and puffiness.  See photo, right.  For lack of knowing what else to do, I used 3 Tobradexdrops.  That’s the pharmaceutical I have on hand

My right eye, Dec. 12, 2011

for when my left eye does this.  My Dr.  PCP would likely like to know about this but I have done what I was supposed to do.  She recommended 5 months ago that with my newly acquired good insurance that I go to a Neuro-Ophthalmologist.

I have yet to make an appointment.

I believe I have a long list of reasonable excuses for not making the appointment.  The overarching reason (beside working a ton of hours at my new  job) is my reluctance to start it up again.

What is It?  It is the commitment to new doctor-patient relationships.  These relationships include follow up including more of it.

The multiple doctors.  The tests.  The referral notes.  The blood draws.  The waiting.  The retelling of my history. 

I’m over it.

Even so, I called the Neuro-Ophthalmologist on Friday and found out I need a report from a regular Ophthalmologist stating why it is important that I see the super special Neuro-Ophthalmologist.  I don’t really have access to that.  I stopped seeing my Ophthalmologist when she stopped providing me with helpful information and suggested  there may be nothing wrong.

I find it difficult to believe that anyone could look at my eye in this condition and not at least diagnose me as having something wrong.  Perhaps I should see if I can get an appointment at super eye clinic with a regular Ophthalmologist who will then connect me with a Neuro – O?

While I am admitting my lack of follow-through, I will admit:  It has been 1.5 years since I have seen an endocrinologist and I have not had any follow-up on my multinodular goiter.  This is partly by choice of not wanting to deal with it and also because of a busy schedule.

I also need an Otolarngologist – to get my ears and larynx checked and get  new hearing aids.  I’m having such a hard time hearing and my ears are full of dry skin and yucky stuff.

The Pain Management Doctor I am seeing has got me to a place where oral pain medication is limited, a patch is my main treatment and I remain at 2.5mg of Prednisone.  Pain Doc believes I need an MRI of the Lumbar spine.  My last L-spine was in January 2009.  My Hopkins Doc stated in my report last year that since the spinal cord does not go all the way through the L Spine, I did not need it examined.

It would be great to have someone who could help me navigate this process.  Someone to give me good, solid advice about whether there is more I need to explore about my body and its problems.  Examples:  what is the cause of my limited ability to walk – can we find out yet?  Do I have psoriasis like my father and therefore arthritis?  What can I do to have less fatigue?  What is up with my eyes? What is my prognosis?  I know that the concept of a Medical Home includes a Navigator-type position.   (Read about the Patient Centered medical Home by clicking the link)  More on this in another post…

Surprise! Nomination

I received an email message this week  from Wego Health to notify me that this Blog was nomininated for one of their Health Activist Awards 2011- The Best Kept Secret Award:   “Help us find the hidden gem of the Health Activist world.  I’m pretty certain I know what reader nominated me – I’m honored.  Thank you for thinking of me.  There are many different awards and I encourage you to check them out.  I’m pleased that their process is not a popularity contest – there is a judging panel.  I’d feel this way if I was in the running or not.

Thank you for reading.  I hope you are hanging in there with all you are going through.

Best,

Q

Neuro-Ophthalmologist

However, I have not gotten very far on the questions. Have any ideas for how I could best answer the following?

What could the company have done differently that could have caused you to stay with the company?

Are you aware of any violations in the following areas or do you have evidence of wrongdoing during the time of your employment?

If the CEO left unexpectedly today, and you were put in charge, what are the first things you would change?

What could have changed 6 months ago that would have prevented you from leaving?

Describe any areas of conflict that have affected either your performance or morale?

i welcome all of your ideas.

Many thanks,
Q

Wants me to complete Exit Interview.

Painful.

I worked so hard.  Treated like scum.

Discriminated.

Where do I start with this Exit Interview form?

Part of me has forgotten the specifics.  Those hurt.

one day i’ll be ready

• A little less overwhelmed with fatigue.
• A lot more overwhelmed by anxiety.  I’m having waves of panic
• A tad hopeful per my husband’s comment (I do appreciate this honesty), “The swelling in your face has gone down significantly.  Really.  You no longer look like your neck is being swallowed by your chin and face.”

But not hopeful enough.

I feel in adequate in a broad sense and also specifically in relationship to my job.  I don’t know what to do about the situations I’m facing.  I’m not sure why I am having such a hard time pulling together a plan of action to improve the job.  Part of me feels like  it is 100% hopeless and another part of me feels it is my fault.  - that I’m just not good enough to take on this challenge.

Then I wonder if it’s my illness or it’s that I’m out of my league or that the job circumstances stink no matter who would be sitting in the ratty old chair with a fancy job title.  I get panicky over not knowing if I am still the firecracker.  Or am I burnt out and useless?  Can I succeed in this job? I feel like i need to know.  I need a guide.  A Sensei.

Since i don’t have a mentor at the moment, I will try out a 4-Step Self-awareness Workbook.  Perhaps some wisdom will come to me. And peace.

I have a myopathy or myelopathy of unknown origin. Prednisone seemed to be the only thing that helped. It gave me the ability to walk. The ability to lift my arms. And, therefore, the ability to work (and keep) a FT job.   Why?? Because it reduces pain from muscle tightness.

Now, I’m back to being crunched up in pain. I thought my docs and I had a solid pain management pain. But then, I screwed up. I’m not

sure what happened. But, I know I now wish I would have said, Yes – let’s go a dose higher. Because I am suffering in pain and that’s what my Doc says he doesn’t want me to do – suffer. It’s just so hard to wrap my head around that pain pills and patches are the answer until the cause of my myopathy is uncovered. While I’m not only suffering in physical pain today, I am also suffering emotionally. I feel worthless. I have held my family back from enjoying the Thanksgiving weekend. I am fatigued and in crushing pain that negatively impacts my ability to walk around a crowded house or walk upstairs to use the restroom.

I have one more day off from work and do not see how I can improve enough to walk around the office and think through the fatigue. In the past, these would be the times when I’d up the Prednisone, at least temporarily. That’s not an option I am giving myself. What will happen come Monday?

I have been reading Medical Mojave‘s blog including the post Self Care for Steroid Withdrawal or Adrenal Suppression     There is some great information in the post and related ones.  I’m not sure how applicable some of the suggestions are for me because I do not have an adrenal problem.  However, the post really clicked with me.  No wonder I am using my albuterol inhaler more.  No wonder my skin and scalp are so dry.  Prednisone was wonderful for keeping my asthma and psoriasis/eczema in check.

A message to doctors, other medical professionals, relatives, co-workers, loved ones, neighbors, friends, and people who are frustrated by us:

What do people with chronic pain  really want?

We want to feel in control.  We want to feel strong.  definitely strong.  In our bodies and our minds.

Do you agree?  What do you think people with chronic  pain (illness, disability, etc.) really want?

Many thanks for reading.

Wishing you the best,

-Q

Instead, I am starting my “What to expect” series for Prednisone Withdrawal.

Why stop the long-term use of Prednisone?
The prompt for me was that I’m still no better, still have no answers, and keep dealing with negative side effects of Prednisone. I’ve been off and on Pred for a couple of years and now solid treatment daily for approximately 9 months. I asked my doc if there were other choices. We talked about other options to help with pain that then help me walk more.

Then two major things happened. 1) my husband told me he is scared every day because I am on Prednisone. He never told me this before. 2) My 45 year-old sister received a diagnosis of MCCune Albright Syndrome due to excessive use of Prednisone, particularly for treatment of her Crohn’s Disease and multiple other problems – some of which are unexplained but not similar to mine.

What happens when you reduce your long-term Prednisone prescription?
Now, I am full swing in decreasing the Prednisone and accepting and living the life of a person labelled with the “chronic pain” diagnosis. I’ve been at 2.5mg Prednisone for over 2 weeks. I take duragesic and break-through medication. My face is puffier and uglier today then it has ever been. My feet have been swollen for 6 days. All through my Prednisone treatment, my doc would check for feet swelling and I never had the problem. Instead, I have it as I go down so low. The swelling is not only ugly but also painful. The top of my foot has swollen over my toes so I can’t lift my toes at all, therefore, I have a hard time walking.

I have been prescribed a “water pill” called Lasix - a potent diuretic (water pill) that is used to eliminate water and salt from the body. In the kidneys, salt (composed of sodium and chloride), water, and other small molecules normally are filtered out of the blood and into the tubules of the kidney.

I am so scared of this medication. I don’t know what I’m scared of but I know I wish I wasn’t on it and wish the swelling was all gone. In addition to swelling, I am finding myself pretty depressed. Whether this is a direct response to Prednisone Withdrawal, I’m not sure. It’s a wait and see right now.

Do you know what else to expect? For how long?

Thanks for reading. Happy happy day.
-Q

I’m wondering because the swelling has worsened and is equal bilaterally. Without my cane, I’m not sure how I would have gotten around today. The swelling means I can’t move my toes or ankle so I can’t walk heel to toe. I was pretty shocked by the tightness in my right calve – it was equal to what I experience at my worst with my left leg.

What to do?

Left a desperate message with Dr. PCP front desk (they are so kind) and got a call back at 8:10pm. PCP believes it’s Prednisone withdrawal and that I need BLANK Rx. I forget though it sounds familiar from a previous conversation.

Reading about tapering from Prednisone is scary. Totally freaking me out. Hoping to learn more. Hoping the swelling stops. Hoping the Rx is a magic one. Hoping nothing else freaky happens with my body. At least for now. For now.

I think I’d feel slightly better if I could find a web article describing what I’m going through. …no such luck.