Time to use all your knowledge and experience as an Health Activist! Create a “Care Page” for newly diagnosed patients. Pull together 5 of your own blog posts that could help a newly diagnosed patient and include 5 external resources you find helpful.
Mind Over Meniere’s Resource Page (a place where you can find almost every resource available on Meniere’s, be sure to check the comment section for updates)
As health activists, we are on a mission to innovate healthcare. If you could change one thing in the healthcare landscape right now, what would it be?
I was speaking with another health activist and we were saying, that’s just it — there are so many things that are broken, so many things that need to be mended, so many changes made, that choosing just one thing is like picking just one specific glass bead from a bowl of a thousand. In the perfect landscape, there wouldn’t need to be health activists– health care would be as it should be.
Choose 3 images that represent your health focus. Share the images in a post and explain why you chose each of them.
I don’t really know what they mean by “health focus” so I’m going to chose images that represent my illnesses or what I focus on in terms of my health.
I took this photo during a vertigo attack. I was starting to take a photo of something and suddenly a vertigo attack started and this was what I got. To me this represents my vestibular illnesses.
This manipulated photo of me represents the pain and aura of my migraines. I use this with other manipulated photos to show my doctors my level of pain.
I created this for one of my doctors because she gave me hope when I didn’t think I had any left. Now I realize there is always hope, no matter what. This graphic represents that hope.
Say WHAT?! What’s the most ridiculous thing you’ve heard about health or your condition. Was there any context? What did you think at the time you heard it – and what do you think of it now?
This past year my husband called and set up my mammogram, he told them when he called that I’m deaf, so the attendant would be aware. When we showed up for the appointment a woman came over to me and started signing. I had no idea what she was there for. She said that she was my interpreter. I don’t know sign language. The office assumed that I needed an interpreter because my husband told them I’m deaf. Yes this was a nice gesture and it was something they could have assumed since he told them I’m deaf, but they didn’t ask, and it cost the office money to get an interpreter.
You would not believe how many people expect me to automatically know sign language and be able to read lips. This knowledge was supposed to somehow magically absorb into my brain immediately when I lost my hearing. Really, people expect this. You would be surprised at the people who knew me before I lost my hearing and when I lost my hearing they thought I could magically read lips, even better are those who thought I could suddenly speak another language.
Another ridiculous thing I hear is to take certain supplements and I’ll be cured. Normally I hear this from people trying to sell me these supplements, but not always. I do take my share of supplements, they may help a little, but there is no way a supplement is going to cure me. I have chronic illnesses, there is no cure. Often people with Meniere’s are so desperate they will grasp at anything, but there is no cure, no one knows what causes it, a supplement is not going to make it go away.
The most ridiculous thing I’ve heard from a doctor happened just this past year. I went to him after going to John Hopkins Medical Center (JH) about Meniere’s Disease to discuss having him do a procedure on me that the doctor at JH suggested. I’d been to this doctor before, this was a visit to further discuss my tests and options. He walked in and started talking about my tests then looked at me and said that I “might have this thing called Meniere’s”. WHAT??????
Monday Motivation: What’s your life slogan? Explain what words or mantra keep you going and why.
I’ve spoken about quotes that help me through, but there is one mantra that I will start to chant when things get particularly tough.
Just keep swimming.
When I saw Finding Nemo and heard Dory say, “Just Keep Swimming”, to get her through all of her challenges, I started saying it to remind me to keep going even through the hard times. It started out as a joke, but it stuck around because it made me feel better. If I can “just keep swimming” I’ll be okay.
I admit when this prompt came up I had no idea what to write about, I’ve already told most of what I live by, my favorite mindfulness quotes that mean so much to me and the chant I use when I have vertigo, but those things just didn’t seem to fit in here. I turned and asked my hubby what he thought and he immediately said, “Just Keep Swimming”. I guess it’s a pretty good mantra, and I guess he knows me pretty well.
What has been the highlight of your health activist journey? We want to hear all about it, perhaps a conference, a podcast or meeting a fellow HA. What made this experience so special?
There are three things I can think of that I’ve been particularly proud of during my health activist journey.
And I was featured in an article by Sanjay Gupta. You can check out that article here: How Vertigo Changed My Life.
These two events are very special to me because I felt that I was making a difference. I knew I had been contributing something worthwhile and people noticed. I don’t have to be noticed to continue to do the things I do, but it is nice. Sometimes I’m not able to do much, it’s things like this that push me to do a bit more than I think I can.
The third thing is by far the most important to me, it is the people that I meet and the friends I’ve made on this journey. The people I meet in the doctor’s offices, the people I meet on line….all the people I meet who care about health advocacy touch me. I’m so lucky to have met such wonderful people and to have made some amazing friends.
Everyone has tough days, but how do you pull yourself out of the rut? Maybe you blog, repeat affirmations or listen to a favorite playlist. Write about what tools, tips or practices you use to lift your spirits after a rough patch.
When I read this prompt I was reminded of a post I wrote a few years ago, I thought I’d link back to it now for your reading pleasure. Living In The Moment In this post you will find one of the main ways I deal with the rough days.
A little list of things I do to deal with a rough patch:
I do things that get me involved with others. I reach out. I text, email, blog, talk….
I do things that relax me. I take a bath, a nap, read, watch movies and mindless TV…
I do mindfulness exercises. I focus on staying in this moment. I remember that the past is over and the future is not written (when I’m having tough days I can get caught up in “how good things use to be” and “how bad things will always be”, neither of these things are true, focusing simply on the present can make it not as overwhelming). I meditate and do deep breathing exercises.
I remember to be grateful. I write in my gratitude journal, I am sure remember I have many things to be grateful for.
During particularly rough times, such as a very bad vertigo attack, I chant. I have a special chant I learned in a yoga class years ago that my husband and I chant together when I’m extremely sick with vertigo, this helps to calm me down. “Om bhur bhuvah svah tat savitur varenyam”
One of the biggest things I need to do during a rough patch is to remember, it’s not my fault. I’m often hardest on myself during a rough patch, so I try to practice self compassion during this time most of all.
During particularly rough patches I reach out to my therapist, remember, that’s what they are there for.
How do you get through a rough patch? Any suggestions?
What’s a health cliché that really bugs you? What are you tired of people asking you or saying to you again and again? Write it down. Then reclaim it! Take it back and turn it around so you make it something you could be comfortable hearing.
There are a number of clichés that really get on my nerves: “What doesn’t kill you makes you stronger”, “Instead of having a bad day, be thankful you have the day”, “Where there’s a will there’s a way”, are just a few.
“What doesn’t kill you makes you stronger” – If this were true I’d be Superman by now! NO, what doesn’t kill you, doesn’t kill you. Period. You might learn something from it, but it didn’t make you physically stronger. Some people might be mentally “stronger”, others might break down completely. When something doesn’t kill you, well thank goodness it didn’t kill you. Instead of saying this, tell me how strong you think I am.
“Instead of having a bad day, be thankful for the day” – Why can’t I have a bad day and still be thankful? Everyone has a bad day and that’s okay. There is no way that someone can have a good day every day, and no one should make someone feel bad when they are having a bad day. I don’t believe my illnesses make my life miserable, but I do have bad days. I’m still thankful for my days, if they are good or bad. If you feel I’m having a lot of bad days and you want me to pay attention to what I’m grateful for, then just say something like, “What are you grateful for today?” and start a conversation, perhaps you can share something you were grateful for that day.
“Where there’s a will there’s a way” – In who’s world is this true? I have the will to do many things that I will never be able to do. Before I was sick there were many things I had the will to do that in no way could I do, for any number of reasons. This is just a falsehood, yet I hear variations on this all the time. I don’t know how to put a spin on this one. Let’s just not say anything like it, Okay?
Did I touch on anything that people say to you? What else do people say that bugs you?
Throwback Thursday! Grab a post from your archives and repost it! Add a few sentences at the beginning to frame it. Why you chose it. Why you liked it. And why it should be shared again.
The post I want to share with you again came from another Health Activist Writers Challenge on April 11, 2012. The prompt was “Theme Song”, I was to imagine my health focus or blog is getting its own theme song. At the writing of this post I was losing my hearing, but I hadn’t lost it completely yet. I did not have a cochlear implant yet.
I wanted to repost this because often people have no idea what it means to have tinnitus. Please note that my tinnitus will not sound like anyone else’s tinnitus, everyone is different. Even my tinnitus is different on different days. It sounds much different now than it did at the time of this recording. I want people to know that just because I’m deaf it doesn’t mean I just hear silence when I take off my cochlear implants. Here is that post, I hope you enjoy it:
I happen to be losing my hearing due to Meniere’s Disease. So music is very hard for me. I can’t really hear it even with my hearing aid, it sounds very tinny. However, I have tinnitus all the time, so I hear noise all the time. At this time I’m deaf in one ear, and have fluctuating loss in the other ear, the other day I was having a particularly low hearing day. Deciding my hearing aid really wasn’t doing any good, I decided to just leave it out. That was the day, I read this prompt. I thought, I couldn’t have a song. Then I thought, even when I’m deaf, due to the tinnitus, I will hear sounds all the time. NO, they won’t be sounds I want to hear, but I will hear sounds.
I talked with a friend of mine, Vincent Morrison, who is a sound engineer. He agreed to help me record something similar to what I hear every day. Please know, my tinnitus changes A LOT. It varies constantly. But these sounds always seem to be around. We did put in some of the startling sounds that just come out of no where that scare me. We didn’t make it as loud as it can be. (I did want people to be able to listen to it.) I wanted to represent that my tinnitus can be softer, a medium tone, and I would say deafening…but that would be silly wouldn’t it?
So on a better hearing day, my dear friend came over and he tried his best. I must admit I’m not the best person at describing sounds. I am so touched to have this recording. Trying so long and so hard to explain just a little of what I hear has been so hard, now…this is my song.
“My Songs of Silence” – sound recording by Vincent Morrison
Picnic with Ants 