Case of the Mondays. Write about something that gets you down, burns you out, or makes you sad. Purge it in a blog post. Turn it around at the end and tell Tuesday why you’re ready for it.
I don’t want to get all caught up in the self pitting part of Blue Monday. I had a pretty rough week last week, this week I’m determined to turn it around. Let me tell you about it.
Last week I had severe migraines almost every day. This week I plan to take medication as soon as the headaches start. I will not worry so much about running out of meds, or rebound headaches. I will work to stop this cycle of severe headaches before it gets too strong of a grip. (hopefully)
Last week I was very off balance and was having mini attacks of vertigo. Last week I was not prepared for this. I’m too used to having my husband here to help me. This week I will be prepared to help myself as much as possible.
Last week I couldn’t walk without holding on tight to my walker. This week I will bring my good walker in the house from out of the car, I have a seat on it and a better way to carry things.
Last week I had a hard time getting myself food because of my balance, this week I will be prepared and will have food ready that I can just grab and go. Food that I can balance on my walker.
Last week my anxiety was very high. This week I will get back to meditating and taking breaks for deep breathing exercises.
Last week I beat myself up because I felt so needy and dependent. This week I will practice self compassion.
Last week I cried a lot. This week I will focus on the positive.
This week has been a challenge physically, and mentally. It hasn’t been horrible, I just haven’t felt good. I’ve been a bit wonky. Feeling off balance and having a hard time keeping myself upright. The election has made me anxious and panicky. As the week went on I started to feel a bit better. Good thing too because I got good news this week that I would be going out of town on Sunday. So today (Sunday) I’ll be visiting with friends.
It was so much fun planning the trip. Finding out that both friends would be home and would have time for me. I’ll see the first one in the early afternoon when I first get into town and the second will be cooking dinner for me. This is the most exciting part of my week! I get to see my good friend, her husband and son. We’ll have lunch together and visit. It’ll be grand. Then off to have a friend cook for me and my husband, and I’m finally meeting her beau. They’ve been dating for months now and I’m finally meeting him. I’m so excited!
I will admit there is a little apprehension when I’m going to see other people. What if I can’t hear them? What if I get confused? What if my head hurts too bad? What if I have vertigo?
Today I will not allow the “What if’s” to sabotage me. If something happens I’ll deal with it. The friends I’m seeing are the most understanding people I know, so there is no pressure there.
The excitement of knowing the trip is coming has been with me all week. As I’m writing this (yes, I’m writing this post a day early so I can go on my trip and not worry about writing it) I’m excited about seeing my friends and all the experiences I’ll have when I’m with them. I’m so grateful for this time.
What has brought you happiness this week? What are you grateful for?
This letter is to the first doctor I saw for vertigo.
Dr. H,
When I first saw you I was filled with fear and longing to understand what was happening to me. I had just been seen at the emergency room after 12 hours of vertigo, accompanied with almost constant vomiting. It was there that I first heard the mention of Meniere’s Disease. I was told that I should see an ENT (Ear, Nose, and Throat doctor) to help determine the cause of my vertigo. So I came to see you.
You talked to me and gave me a hearing test and told me that I had Meniere’s Disease. You put me on a low salt diet and sent me home. I trusted you. Your staff was amazing. Your nurse had the best bedside manner, she made up for your aloofness. You were a busy doctor, I understood.
The vertigo continued to come back, over and over again. I kept coming back to see you. You continued to give me hearing tests. Yes they showed that my hearing fluctuated and I was losing some of the low frequencies, common in Meniere’s Disease, but this is the only test you ran on me. You said that putting tubes in the affected ear should help. Again, I trusted you. So I got a tube in my ear. It seemed to work.
After a couple of months the vertigo came back. The tube had come out. You said I should have a tube put in that stays much longer, but it requires general anesthesia to have it done. I had the tube put in my ear. I had this done a number of times. I’d have vertigo, it would be found that the tube came out, I’d get another tube.
After seven years of the merry-go-round of getting tubes the illness spread to the other ear. So once again I went under to get tubes put in both ears. This time the vertigo didn’t stop at all. I was miserable. I went back to see you. Something had to be done. You told me that you needed to send me to a different doctor because, you didn’t “know much about Meniere’s”. How could you treat someone for SEVEN YEARS and not know much about the disease? How could you even begin to diagnose someone if you know nothing about the disease?
When I found a different doctor, no I didn’t go to the one you recommended, I found my own. I found out that tubes are not a treatment for Meniere’s. It hasn’t been a treatment for many years. You really didn’t have any idea what you were doing did you?
When I started to get the information together to file for disability I requested my files from you and found out that you never put a diagnosis of Meniere’s Disease in my files, you put in unknown Vestibular Illness. How can you tell a patient she has a disease when you didn’t even put it in her files? Is this even legal?
I’m sure my story is all too familiar among your patients, unfortunately many may not even know that you are treating them wrong. I regret that I cannot stop you from telling anyone else that they have Meniere’s Disease. You should not treat people with vertigo. There are a number of things that could have been wrong with me that were not Meniere’s Disease, you just happened to be right. You did not order any vestibular testing or an MRI. You did not rule out any other vestibular disorders or a brain tumor. When presented with a patient who has vertigo you should send them to a doctor who knows more about it immediately. What you did to me is nothing short of neglect.
How can you play with people’s lives? Is having a big business practice more important than the patient?
I need to thank you for teaching me that I know more about my health than any doctor. I knew something wasn’t right when I was seeing you, I just didn’t know what. I had a feeling there should have been more testing, but I trusted you. I now know to never blindly trust a doctor. Before you, I would never have thought to do a lot of research into my disease. I would never have thought of firing my doctor. But I fired you.
I left your office and didn’t go back. Your office wrote me an email reminding me I hadn’t be in for a while and wanting me back. I wrote them back explaining my frustration with my treatment. I never received a reply. This is just more evidence that you think very little of your patients.
Please cease treating those who come to you with vertigo. Immediately send those patients to a doctor who knows more about vestibular issues than you do.
There are so many amazing people, it is hard for me to pick just a few to pass on to you, but I’ll give it a try. If I don’t mention someone it doesn’t mean that I don’t think you are great!! It just means I ran out of room.
Tweeters worth reading their tweets on Twitter.
@HearingHealthM (Timely information and lively insights for everyone who cares about hearing loss)
Yahoo Answers Post – Pretend you are writing a question about your condition – it can be as silly or humorous as you want. Now answer it. (Remember: Your answer can be just as silly)
I can’t really think of questions like this, so I thought I’d list a couple of questions put to me that I think are a bit silly, let’s see what you think.
(mouthing words to me) “Can you read my lips?” I always think, “Is this some kind of game you play with deaf people?”
This from someone who knew I lost my hearing 3 years earlier. “If you can’t hear how can you speak so well?” What did I forget how to speak? Really, I had to laugh!
Now I just thought I’d share something that I misheard that we still laugh about.
Hubby and I were riding in a car and saw a sign on a church about Easter and Jesus Christ. I suddenly couldn’t remember things about Jesus and asked what he was other than the son of God. Stuart answered, but what I heard was: “Jesus was Jimmy Buffett”. I lost it. “What?” “Jesus was Jimmy Buffett???” I’m dying laughing and Stuart is trying to tell me that what he really said was that “Jesus was a Jewish Carpenter”. To this day in our house, Jesus is Jimmy Buffett. (please do not take this literally)
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.)
Was starting your advocacy journey a hard decision? Were you anxious and hesitant or were you excited and ready to share your story? Tell us how you chose to start advocating for your condition.
The start of my advocacy journey for Meniere’s Disease and other chronic illnesses is kind of a long story. First I found out I am allergic to wheat and suspected to have celiac disease. Here, let me ‘splain….I had been generally sick for a long time when I found out I’m allergic to wheat, so I stopped eating wheat. I started to feel a whole lot better, but I was still getting sick sporadically, so I decided to stop eating gluten. My doctor then suspected that I may have celiac disease. I was given the blood test but tested negative, I was given it again and tested positive. This provided no definitive results, so I would need a biopsy from my small intestines. However, the only way for this test to work was for me to start eating gluten again for a month or two. I asked what the treatment was if I was found to have celiac disease and it was a gluten free diet. Well I was already eating that way, so I decided to just keep on a gluten free diet instead of having the test. Maybe I’ll have it one day, but probably not. The doctors are pretty sure I have it due to the last blood test, I don’t really care, I know I can’t eat gluten.
This was before there was a lot of knowledge about a gluten free life style and celiac disease, so I became an advocate. I started a blog and worked hard to bring awareness. I worked with local groups. I was a taste tester for Whole Foods Gluten Free Bake House. It was an exciting time for me, I felt like I was making a difference. Then my Meniere’s Disease got so much worse.
When the Meniere’s Disease went bilateral, meaning I suddenly had it in both ears instead of one, I had to rethink my life. (if you don’t know about Meniere’s Disease, and you’d like to, please see Meniere’s Disease-My Story at the top of the page.) Once I saw my new doctor at Duke Medical Center I had renewed hope (more than I should have really). I was going to focus on getting healthier. I wanted to increase my exercise and start eating even healthier. I decided to stop writing my gluten free blog and start a blog all about me getting as healthy as possible with Meniere’s Disease and (suspected) celiac disease. This blog was called 365 Days to a Healthier Me.
I soon discovered I was not going to be able to focus as much on getting healthier as I was on simply getting through the day. The vertigo was happening almost daily and I was losing my hearing rapidly. I decided to start writing about my experiences with Meniere’s Disease (I stopped writing about a gluten free lifestyle by then) and this naturally morphed into advocacy. I found others were out there who were struggling as I was and needed some support. Soon I started talking about other illnesses I struggle with on a daily basis, such as chronic migraines and bipolar disorder. I have found that people with chronic illnesses need a voice. I hope I can add a little voice to a lot of other voices.
After the loss of my hearing and with continued struggles with vertigo I haven’t been able to advocate in person, but I continue to try to keep up the good fight via the internet. Sometimes I’m not able to do as much as I’d like due to my illnesses, but I’ll keep trying. That’s all we can do. Keep trying.
I thought long and hard about this question and the first answer I came up with was the only logical one I could think of. My super power would be the ability to control the biological structure of any organic matter. In other words, I could heal. (I’d be able to do harm if I chose, but I’m a good person, so I’d only use my ability to heal. Of course, there are a few doctors that I wouldn’t mind feeling the way I have for a few moments. – NO! Really, I would only use my powers for good!!)
How would I use my powers? Hand on head…”I heal you, and you, and you….” You think that would be simple. I’d heal people. But really things would get complicated very quickly.
I know I’d have to keep my ability a secret. I’d have to be the typical super hero and have a secret identity. I know I wouldn’t be able to help everyone and that would break my heart. How would I chose? Would I only be able to help those who happen to be close to me? Would it simply appear to be a miracle?
As much as I’d like to heal everyone I know I couldn’t, and I couldn’t sit around 24 hours a day just healing people. Would I go around the country with a traveling show healing those who came to my tent? “I Heal You Brother!” No, I don’t think that would work. I know I’d like to heal those who I’ve met who have suffered so much, but there are so many more whom I have never met.
I know I’m going around in circles and repeating myself, but this is the problem with thinking up a superpower. We don’t think about the reality of them. I want to heal people, but I don’t know how to chose who to heal. The reality is I won’t be able to heal everyone. I’d have to live my life in secret. I would only be able to heal those whom I came in contact with. That wouldn’t be enough for me.
I think it’s best to not have a superpower. We have to find our way in the world. Perhaps we can change the world as we are.
Do you remember the day you were diagnosed? Perhaps you were scared, felt alone and surely you had tons of questions. Write a letter to yourself for the day you were diagnosed, knowing all you do now.
You’ve been waiting for this day for a long time. You’ve been diagnosed with Meniere’s Disease before, you just didn’t know that the doctor didn’t really diagnose you. He didn’t know much of anything. I’m sorry you had to go through that. He didn’t even put the diagnosis of Meniere’s in your records, he only told you that you had it. So today you sit there wondering….”Do I really have Meniere’s? Do I have some brain tumor? Is there something worse? Could it be something minor and I’ve been suffering for 7 years because I have been going to a doctor who “doesn’t know much about Meniere’s”? How could he have looked you in the eye and said that? After he has been treating you for SEVEN years? Now that it is in both ears he admitted he didn’t know much. WTF?
So today you are here at Duke Medical Center to see this new doctor. The doctor won’t even see you until you have been through a series of vestibular testing and had hearing tests. Don’t be so nervous. The tests aren’t as scary as they might be, the people who run the tests on you are very nice. Don’t get me wrong the tests are intimidating, but the wonderful people there who are taking care of you make it much easier.
After the vestibular testing and the hearing test you go back to meet the doctor and you are diagnosed with Meniere’s. The tests showed that you have vestibular damage, but there is no cause shown, and you have all the symptoms of Meniere’s Disease. Unfortunately, you have it in both ears. That is going to make it more difficult for you, but you are strong, you will be able to deal with it. The disease is progressive. You don’t know it yet, but you will lose your hearing. That is not as scary as it sounds. You deal with it. Really, it will be okay.
The doctor is very understanding and doesn’t pull any punches. He tells you that Meniere’s is one of the worst diseases he knows of that won’t kill you. There is no cure. There are some treatments, but not a lot. He also tells you that it is a disease of random punishment. He is refering to how the vertigo hits. He explains it is likened to a soldier at war. He knows he will be under fire, he just doesn’t know when. He is always expecting it. You will always be expecting the random punishment of vertigo. It’s a horrible thing to live with. But you will deal with it. One moment at a time.
You learn all of this in one day. Some things you were told gave you some false hope. You will learn there isn’t a “normal” in Meniere’s. There is a lot you will have to deal with over the next few years. Know you will be okay. The more you start to follow a mindfulness mindset you feel better about how things are.
The day of your diagnosis is just the beginning. You have so many more days that are more important than that first day. It was just the beginning. You have no idea what kind of ride you are in for. Don’t give up, even when it seems like there is nothing left. (don’t worry I know you don’t give up….won’t give up!) Focus on each day as it comes, don’t worry about tomorrow so much. Try hard not to focus on the past. It is over and you can’t get it back. Focus on today, right now. Make today the best you can. But remember, we all have bad days. Be gentle with yourself.
Today is day 2 in the #HAWMC. (Health Activist Writers Month Challenge) If you’d like to read more blog posts about this please check out WEGO’s Facebook Page. And don’t forget to Like my Facebook Page – Picnic With Ants.
My blogging process is a bit different as I change it up a bit. For some posts I just shoot from the hip; I write what comes to mind and hit Publish before I change my mind. 🙂 Other posts I do a lot of research so it takes time to develop those post, they can take days to write. Still others I write in advance. I know I am going to post them so I get them ready ahead of time and schedule them to come out.
I do try to edit my posts, unless I do a stream of conscious post, even though it may not seem like it sometimes. Isn’t it funny how you can read the same thing over and over and it looks just right until after you hit Publish then you notice it has a lot of errors? Really, I did read it over for errors, really I did!
Trying to decide what to blog about is the hardest thing for me. I will sometimes come up with some great ideas and I get very excited to write. Other times I’m stuck. I have no idea what to write about. I don’t want to always write about me and the newest things that may be going on with me and my illnesses, especially if nothing has changed in a while. Having a chronic illness can mean that things just stay, well, chronic. They may not progress at all. Things are just the same. It can be a challenge to come up with new topics to write about when you feel things are just the same.
I read a lot of blogs and I feel a lot are either all down in the dumps, or they are all sunshine and rainbows. I want my blog to be somewhere in the middle. I want people to come here and know that having an illness doesn’t mean you have to be sad about it all the time, but you also don’t have to be positive all the time. Here is someplace in the middle.
Don’t get me wrong, here you will find the down and dirtiness of being ill, and you will also find good days and thoughts that may help you along the way.
Oh, I’m moving away from my process. Well sometimes my process is to just sit back and talk to my readers, like I am right now. You are, after all, who I write this blog for. Well you and me. 🙂
Picnic with Ants 