Category: Advocate

Really quick update

On By WendyIn Advocate, Chronic Illness, Headaches5 Comments

I forgot to hit Publish, I wrote this a couple of weeks ago…or last week, I don’t remember. I’m still having a little bit of memory issues. So…her it goes.

The hospital has acted on my complaint.

The staff has had a training session on how to handle patients.

Do not assume the patient is in the wrong.

Do not ASSUME anything, UNDERSTAND what is happening then react.

Never react unless you understand.

Security should only be called when patient is a threat to themselves or others.

That is part of the training the nurses and staff on the neurology floor have now been given.

Since the hospital lost a lot of their staff due to COVID some of the training hasn’t been done. They are certified in their positions, the nurses have graduated, but they haven’t had proper training in how to handle every situation.

This was not supposed to be said to us, but the person who is monitoring complaints (and talking to S) was a nurse for 40 years, she sees how different it is since the pandemic. She is trying her best to make sure nothing like what I went through happens to another person. That’s all I wanted.

Finally it is in my records that I am deaf with cochlear implants. I thought it was in there before, so that confused me. We were told if I have to go in that hospital again I need to make sure there is a sign on the door that says “STOP patient is deaf with cochlear implants”, they all need to know I can’t hear everything that is said, sometimes I can’t hear anything that is said.

I won’t be getting ketamine any more. I’m very disheartened that it did not work. I felt like it was the last resort. I pretty much still feel that way, but I’m not giving up! I’ll keep trying, that’s all I can do. It’s very hard to live with a constant migraine, people who’ve never had one cannot understand, but they can be sympathetic and supportive. If you don’t have anyone in your life who meets those requirements I suggest you go out and find someone as fast as you can. If there’s no one at home to support you, reach out to a support group, in person or on line. If you need, contact me, there’s a tab for that at the top of the page. (note I do not accept request to post on my blog to advertise a product…) I am very happy to talk with anyone who needs support. Or just someone to vent to.

That’s all for now,

I hope you are all safe and as well as you possibly can be.

W

A Tiny Bit of Independence Restored.

On By WendyIn Advocate, Chronic Illness, Deaf9 Comments

On the 18th I had an appointment with my neurologist, she is a headache pain specialist, to get the Botox shots for my migraines.  I get these injections every 3 months.  They do help.  No, they don’t take away all my migraines, but I don’t have to take near as much medication, and I’ve noticed the migraines I do have are very often much less severe than they used to be.  Also, No, they don’t work on wrinkles.

fairy doctor
Doctor Fairy: fairiesbynuria
(Please click on image to be taken to fairiesbynuria’s etsy page,
she makes the cutest fairies for all occassions)

My doctor is a little lady, so very cute and sweet.  She reminds me of the good fey (for those of you not into fantasy books, according to Wikipedia, “Fey is an umbrella term referring to fairies, pixies and sprites in the broadest sense“…this is a very simple definition, but you get the idea).  I have told her she’s my sweet good fairy who gives me little bee stings that make me better.  It has become our little joke.  It’s also quite amusing to me as fairies are normally very mischievous and often not of a good nature…so giving me little bee stings would be something I think just might do!  *giggle*

This dear sweet woman has the softest most feminine voice I think I’ve ever heard.  I cannot imagine that she could ever speak loudly, believe me, I’ve seen her try.  She has tried to hard to make sure I could hear her, but I just couldn’t.  Therefore, I’ve never been able to have a conversation with her.  She always looks so sad, yet hopeful, when talking to me.  Sad that I haven’t been able to hear her, yet hopeful that I will be able to some day.  I have been seeing her since before my first Cochlear Implant surgery.  Now I have 2, and the last time I saw her I had recently had the second one turned on.  I still couldn’t hear her.  She looked so….well, sad.

When she walked in the room yesterday the first thing she said was, “How’s your hearing? How are the new CI’s working?”  And I answered her.  I heard her!!!  So I could actually answer her, not stare at my husband waiting for him to answer for me.  She was absolutely giddy!  I know I kept her too long and made her get behind schedule because she and I just chatted for a little while.  I’ve never seen her so delighted.  She told me when she saw my name on the list of patients for the day she was hoping I could hear.  Isn’t that just the nicest thing?  I thanked her for thinking of me, she answered that she thinks of me often.  Wow!  What a great doctor!  And she’s not even my ear doctor!  (Just a note, if you are suffering from Migraines, try your best to find a neurologist who specializes in headache pain, this has made the world of difference for me.  It has given me a better quality of life…at least on that front.  If you want to ask me about my doctor at Duke, feel free to write me.  Look under the About Me page.)

After receiving my “B” stings.  (yes, B stands for Botox…hahaha…I’m being a little silly today too!)  We wrapped up the visit and she started to leave, I came so close to grabbing her and hugging her, but I wasn’t sure about how she would feel about that.  She started out the door, then suddenly came back in and grabbed ME and gave me a hug!  I was so surprised, she was just so thrilled about my progress!  She made my day!  I would have been thrilled at the fact that I could hear her, but to have her get so emotional about it, well that made me feel so loved.

Before this visit I thought about requesting CART (Communication Access Realtime Translation) for my visits to see her.  I decided not to because while giving me the shots she spends a lot of time behind me, and I have my head down so I can’t see anything, a translator wouldn’t help much.  To find out more about CART, please hover over the word CART and click to follow the link to the National Association of the Deaf.  I’m so thrilled I didn’t have to use this service to be able to hear my physician.  Hearing her without my husband’s help was so liberating.  Just a tiny bit of my independence restored.

Being a better Advocate – updated

On By WendyIn Advocate, Health, Meniere's Disease4 Comments

little butterfly on my Echinacea plant

I’ve always said that we must be our own best advocates.

We need to find out as much as we can out our illnesses, and make sure the doctors we choose are up to date, and caring.  For me, I like doctors who will think outside the box.  Who try empirical evidence, instead of thinking the normal is normal for everyone.

It’s also very important to make sure your doctors understand what is going on with you.  That has been a hard thing for me lately.

I didn’t want to admit that I’m not doing well.  I have been so happy with the results of the CSF patches, that I didn’t want to think that I might be taking a step backwards.  I’ve been keeping my doctor advised of my situation, but I have been downplaying it.  Stuart says I haven’t even been honest with myself.  I haven’t admitted that Meniere’s has been ruling my life again.   No, I haven’t been having full-blown attacks, but I’ve been feeling so bad that I spend most of my time lying down or sleeping.  I got the Wii Game Just Dance this week.  It’s so much fun, but every time I try to do it, I end up having mini spins and spending hours just wanting the world to be still.

So today I sent Dr. Kaylie an email, and told him just how much this has been affecting my life.

I realized that I have not been taking my own advice.  I have not been a good advocate for myself!  That is going to stop.

If I don’t hear from Dr. Kaylie by tomorrow I will have Stuart call his office.  (Yes, Stuart.  Another way this is affecting me?  I can’t really hear on the phone very well.)  I’ve also decided I don’t feel comfortable driving.  Feeling a bit drunk all the time, is not the way you should feel when you are driving.

I feel much more empowered now.  Just speaking up, and telling my doctor that I’m disturbed by what is going on, made me feel like I was doing something productive.

**update** Dr. Kaylie emailed me back, and a copy was sent to Dr. Gray (Linda).  He said, “It might be a good idea to get another myelogram.  What do you think Linda?”

I’ll keep you posted on the outcome.