I’ll be absolutely honest, I don’t like to set goals. Since I’ve been sick, setting goals always seems to lead to utter disappointment. That doesn’t mean I don’t make plans, I do, but if they don’t come to fruition, I don’t get bent out of shape about it. If I made a set goal to accomplish with my health activism I would feel bad if I couldn’t follow it through. With this in mind I do have a few things I’ve been working on that I’d like to follow through on.
For the past six months I’ve been writing a post called Mindfulness Monday, it contains a couple of mindfulness quotes and an illustration created by me. I’ve worked hard to make sure all the illustrations are created by me, even if I have to reach back and use things I created a while back. I plan to keep this going. I think nurturing the mind and spirit is just as important as nurturing the body.
Recently I’ve become more active on Twitter, I plan to keep growing this avenue of reaching out with my activism. I’m getting more involved in Twitter chats and hope to be able to contribute more in the future. (I really love intake.me‘s Patient Chats.)
I’m thinking of becoming an ambassador for VEDA (vestibular.org) however, I’m not sure I can follow through on all the requirements. I’ve decided to do the requirements for a while before signing up, to make sure I can do it. A kind of “try it out” first. I think this will take the pressure off of me to be able to do it right from the start, and I won’t feel guilty if I can’t keep it up.
This past week has once again taught me that making plans is not something I can do lightly. I’ve been having vertigo on and off a LOT the past week. I’m proud of myself that I finished this blogging challenge. I’m very proud of all that I’ve accomplished this week in spite of being stuck in a chair watching the world move around for most of the time. (just going to the bathroom by myself is a major accomplishment, yes!!)
To sum up, this month I realized I’d like to get more involved in being a health activist, I’m not exactly sure what that means, but I am searching for just the right something.
Wisdom Wednesday: What advice do you have for health activists just starting out? Share your words of wisdom for all the health activist rookies out there!
I guess my biggest piece of advice would be to just get started. Just jump in and start. I’ve been blogging for years, yet I feel like I’m just getting started. I always feel like I’m just getting started, perhaps because I do little more than blog. Recently I started my facebook page, and I’ve started being active on Twitter. I’ve searched out others who posts about Meneire’s Disease, migraines, bipolar, chronic illness and pain in general. I’m learning so much!
I can’t do a lot of the things I’d like to do as a health activist. I’d love to be able to be a voice in person, to speak, to go to conferences, to be more involved. But alas, I can’t. I may try more in the future, but I’ll admit at this point in time I’m too afraid to try much more than I’ve been doing. It has been very rewarding though to get to know so many people who not only understand what it’s like to go thorough the same things I do, but are able to put a voice to it.
My recommendation for starting out to be a good activist. Start slow. Don’t bite off more than you can chew all at once, you will get burned out way too fast. Focus on one thing at first then move on to the next. If you blog, make sure to blog on a regular basis. No mater what form of social media you like, be sure to stick with it. Post often. Make contacts. Believe in what you are doing. Care. I guess that’s the biggest thing, that’s what will keep you going, you must care.
Time to spread the love. Shout out all your favorite Health Advocates! Make sure to share a few sentences explaining just how grateful you are for them.
Listing all of my favorite Health Advocates would take up a book. There is no way I can give a shout out to all of them in this tiny amount of space. When I first read this prompt I thought it read that I was to give a shout out to my favorite health advocate, and I thought that was impossible, but I thought of a way to do it, kind of. Listing all, really is impossible. Please see my post from Friday, Friday Follow, for a list of many of my favorites; there are still more, but that will give you a good start. Today I’ll just list a three blogs I’ve been following the longest that I feel are still doing an exceptional job.
Denise is an advocate for Meniere’s Disease, hearing loss and service dogs. She tells her story with wit and flare in a weekly post on her blog Hearing Elmo. There you will hear about her life with Meniere’s Disease, working and studying in academia, her family, life with a service dog, and her Faith. I’m proud to call her friend.
Madelyn writes at ADD…and so much more, as you can tell by the title she is an advocate for ADD…and so much more! Madelyn’s blog is a place for her to “let you know about new ADD opportunities and to post all kinds of seemingly disconnected content.” This blog is intended to help: anyone with an Executive Functioning Disorder. I don’t have ADD and I get so much from her blog. She is an ADD coach, has won a number of awards, and I think she’s just the bomb.
Kara from Polishing Dookie does an exceptional job making people feel comfortable with her illnesses with a sense of humor and intelligence that keeps you reading. Her tag line “Making the most of the sh*t I’ve got left” shows her sense of humor about her IBD (Irritable Bowel Disease). Kara takes you on a ride that is her life, and you will be happy to join her.
Little Engine Post. Write a list post with 10-15 lines that start each with “I think I can…” Write 5 lines at the end that start with “I know I can.” They can be big goals or something that’s been on your to-do list for the last few weeks- it’s all up to you.
I started writing this post and listed all these things under “I think I can” and realized that they all should be under “I KNOW I CAN”! This post will list a lot of things that are a challenge, but I KNOW I can do it!! It’s a pretty random list, things that came to mind as I was writing,and it’s in no particular order.
I KNOW I can finish this blogging challenge. (having a chronic illness can make every commitment a challenge, but I know I can do it!)
I KNOW I can visit two friends in one day this weekend. (this could prove to be a challenge. I will be visiting them after riding in a car for 3 hours. I hope all will go well. I really want to see my friends, I don’t have many and I don’t get to see them often. I know I can do it!)
I KNOW I can help cook sometimes. (I actually helped hubby cook on Sunday! Something I love to do, but has become too dangerous because of my disequilibrium and vertigo. However, on good days, I can still help!)
I KNOW I can keep up my blog. (there are times that I doubt I can keep this blog going. When my health interferes it takes so much to keep writing, but I know it is then that I need to write the most. I need to let others see me vulnerable. There may be times that posts don’t come as often as I’d like, but I know I can keep it up!)
I KNOW I can be the best advocate for me. (there is no one who knows me as well as I do, therefore there is no one who can advocate for me as well as I can. My healthcare team beware! 🙂
I KNOW I can have the courage to try new treatments. (sometimes I feel I’m done, I just don’t want to try any more. I know there is not cure. I’m tired of trying. But, I know I have the courage to keep trying. I need to try.)
I KNOW I can go on vacation with my husband. (We’ve been talking about going to visit family that lives close to 3000 miles away, I know I can fly and go on the trip. Crossing all fingers and toes!)
I KNOW I can go shopping. (With my hubby or a good friend I know I can go shopping. I just need my trusty walker and I should be good to go. On a good day that is.)
I KNOW I can take a bath by myself. (this really is an I THINK I can. I may not be able to. I have a lot of anxiety taking a bath or shower because of vertigo and overall disequilibrium. I am better with a bath than a shower. However, sometimes I still have vertigo start when I am in the bath and I need help, FAST. So I think I can take a bath by myself. That doesn’t mean I really can, so normally hubby helps me get in the tub and leaves me and I just yell if I need him.)
I KNOW I can have fun with my husband. (we laugh together almost every day, not matter how sick I am.)
I KNOW I can be a good friend. (I think I’m a better friend now than I was before I got sick.)
I KNOW I can live with this pain. (sometimes I doubt this, but I know I can do it! The pain from the migraines and the degenerative disc can be overwhelming at times.)
I KNOW I can be an advocate for others living with chronic illnesses, especially those with Meniere’s Disease. (I’m just a little voice in a large pond, but I’ll use my little voice as much as I can.)
I don’t often reblog a post from so when I do you know the person said something I think is important. What Denise, from Hearing Elmo talks about is important. We have to stop apologizing for our “normal”. Please check out her site for many more important topics, Denise is an amazing advocate.
The other day my iPhone died before I was getting ready for bed. I was a little shocked, because I rarely have it just “die” on me. The new ones have batteries that last much longer – even if you are a frequent user of the device like I am. I stood there with dead […]
I went to the new ear doc to get the results of the vestibular testing, and I felt like I walked into the Twilight Zone.
He walked in the room with his too big smile, shook my hand and told me something about the test…that didn’t make a lot of sense. He said that it showed that I had reduced cochlea function in both ears. That at my age he would expect it to be a 21, but my right ear is a 4 and my left is a 13. I asked…”What does this mean?” He said that it meant that my cochlea wasn’t working as it should in my ears…well duh. I repeated, “Yes, but what does that cause?” “It means you have vertigo. And you might have this thing called Meniere’s”
WHAT?? I MIGHT HAVE WHAT? DO YOU KNOW WHO I AM? YOU DON’T REMEMBER ME? YOU DIDN’T LOOK AT MY CHART BEFORE YOU CAME IN THE ROOM?
Okay, another reason that whole thing was weird….cochlea function refers to hearing. My cochlea is not going to show up working on any test, I have cochlear implants, I have a device in my head that is coiled around my cochlea that vibrates so I can hear. It doesn’t work on it’s own. And the tests I were given doesn’t even test that. But the numbers he gave me do correspond to the main test that I was given. That was just so weird.
He also talked about a hearing test I had last February, I told him I didn’t have a hearing test last year. He argued with me and pointed to the computer and said, that it said the tests showed my right ear had severe to profound hearing loss. I looked at him and took off my Cochlear Implants and showed him and said, “I have Cochlear Implants, why would I get a hearing test? However, I do have some residual hearing in my right ear, but…” and he interrupted me and said….”That’s impossible, if you have Cochlear Implants, you can’t have any hearing…blah, blah.” Stuart tried to explain to him that with the newest CI’s you often keep any hearing you had…he still argued. Dang-it, I think I know if I can hear or not! When I told him that I wouldn’t need a hearing test I saw the nurse point out to him that the date on the hearing test was not from 2015. It was 2014, shortly after my CI surgery….of course he didn’t put that together, that I can hear out of my right ear, a little bit. And he did not admit to us that he got the date wrong. It’s also very sad that the audiologist that gave me the test knew that the new CI’s are often allowing people to keep some of their residual hearing, she was not surprised that I can hear a little out of my right ear. (I want to explain, I can only hear a certain frequency, I can’t hear much. For example, I was sleeping through the fire alarm at the hotel in December, yet Stuart said it was hurting his ears. So it isn’t much hearing, but there is some there.)
Finally, I got tired of dealing with him. I asked him a couple of questions, which I don’t really trust the answers to now, then I said, “So the plan is, I start Vestibular Rehab, I keep working with my migraine doc to get the migraines under control, keep up the low sodium diet, and taking the Valium twice a day. After I go through the Vestibular rehab we will talk about the gentimiacin injections. That’s the plan.” Then I stuck out my hand to shake his. In my mind he was dismissed. He just had that plastered on smile like he had the whole time, and shook my hand and said, “That’s the plan.”
I saw no reason to spend any more time with that man. It was obvious he did not review my chart before he came in the room. I do not understand how he could not remember me. He told me when I saw him last time that I am the most advanced case he has seen, and how many other patients do you think he has that have been to Duke and John Hopkins? Plus, Stuart and me together are pretty darn memorable. I have NEVER had a doctor make me feel like they didn’t remember me. I “might have this thing called Meniere’s”…geez…are you kidding me? He said a number of other things that just didn’t make sense…like, “I thought you had gentimiacin and it didn’t work.” He just said that I might have Meniere’s and then he said he thought I had gentimiacin injections? dodododo
About the tests….well he only gave me the numbers for the biggest test they did. The Caloric Stimulation Test. (click on the link if you want to learn about the test) This is used to for damage to the acoustic nerve (hearing and balance) and it test the brain stem. It is the only test that test the ears separately. The numbers he gave me fit right in on this test. 21 is normal. He kind of dismissed the 13, I really didn’t understand that. Of course, the one that is really out of wack is the right ear coming in at only a 4. So, I’m thinking when we get to the point of killing off the balance center we will do the right ear first and see if it straightens things out, or makes it so much better I don’t feel I have to do the left.
Now for the big decision, what do I do about this doctor? I really don’t trust him enough now to let him give me a shot in my ear that will kill my balance center. Heck I don’t trust him enough to give me a B-12 shot.
What do I do? I can’t find another ear doctor in this whole city that knows anything about Meniere’s except for the other guy I went to who thinks he is a god. He doesn’t listen to his patients…at least not to me, and according to his ratings on-line and on Angie’s list, he doesn’t listen to most people…he didn’t believe I have vertigo as often as I do. Really? Does he think I use a walker just for fun? Ugh…..I hear stories like this from so many people with chronic illnesses, we have such a hard time finding doctors who are compassionate. I’m lucky, most of my doctors are wonderful, but I’m having a heck of a time finding a good ear doctor since we moved.
I found an ear clinic I would like to go and check out that is close to 2 hours away from here. I have a list of questions for Stuart to ask them on the phone before I even think about making an appointment. If they treat people like it appears they do on their website, I think this would be a very good place to go. They are very well versed in advanced Meniere’s, and they aren’t afraid to treat it.
As you can see, I do believe in being an advocate for myself, but I know when I can’t burn my bridges just yet. I’m also not afraid to fire an incompetent doctor and as soon as I find a new one, I promise this doctor will know why he is being fired and I will write a review on him letting others know what I think. The group does have a good support staff, too bad he is the only one in that group that (supposedly) knows anything about Meniere’s.