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 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)
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.
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’s #HAWMC prompt is: First, let’s get to know each other! What drives you to write about your health? What do you want other Health Activists to know about your condition and your activism? Reflect on this for 15-20 minutes without stopping…GO!
What drives me to write about my health? Since the prompt says to write for 15 – 20 minutes I’m going to write stream of conscious, if I repeat myself or have grammatical errors please forgive me.
I started writing about my health for the same reason I still write about it, to help others who feel alone when faced with the same conditions I have been faced with. I’ve found support through my blog and I hope I give the same.
I try to bring awareness about Meniere’s Disease, Chronic Migraine, and Bipolar Disorder and let other’s who have these diseases know they are not alone.
I also have other illnesses that I mention along the way. Like Degenerative Disc, Hypothyroidism and others. I’ve also recovered from Avascular Necrosis in my hip and like to give others with this condition hope.
What drives me is my illnesses and my love for others. My compassion for others and myself. I write because it helps me and in turn I hope it helps others.
What do I want others to know about my conditions and activism?
Well there’s an awful lot to know about my conditions, as there is more than one condition to cover. I’ll pick just talk and see what comes out.
Meniere’s Disease – Meniere’s is diagnosed by the symptoms, there is not definitive test for it. The symptoms are: Random attacks of Vertigo, Fluctuating hearing loss, the feeling of fullness in your ears, and tinnitus. If you have all of these symptoms and they have ruled out other illnesses then by process of elimination they diagnose you with Meniere’s Disease. The progression of the disease can be different for different people. It is normally only in one ear, it can attack both ears. I have it in both ears. It used to be thought that the disease would “burn” itself out. As the patient lost more hearing the vertigo got better, until there was a leveling out period where the patient no longer has vertigo. As can be seen with me that is not necessarily the case. I am deaf now and still have vertigo often. There is not sign of a “burn out” for me. I do want everyone to know that this disease does not progress the same for everyone. just because I lost my hearing does not mean other people will, I still have vertigo, but that doesn’t mean other people will. I’m in a very small minority.
Bipolar Disorder – I want people to know that people aren’t crazy when they have this. Being Bipolar doesn’t stop me from living a normal life. I want people to know that not everyone is the same with this too. I am lucky. With medication and therapy I am doing very well, and have been for years. Others are not so lucky. Medication does not work for everyone. Everyone with this disorder has to work hard.
Chronic Migraines – I want people to know that migraines are not just a headache. They are so much more than that. They make you sick all over. Having a migraine for more days during the month than not can put a huge damper on life.
It takes a lot to face the world with a smile on your face when you are faced with these illnesses and more, but with the help of mindfulness and a support from those who care about me I get by better than I could ever imagine.
This is some of what I want you to know about me and my illnesses and why I write. I hope you will join me on this month long journey. Wish me luck that I can accomplish this goal of posting every day this month!
*this post mentions poop. if you are uncomfortable reading about poop or the smell of poop well, you probably shouldn’t have read this sentence….oops. Really this is as bad as it gets so if you’ve gotten this far, you’ll be okay.
The past few days I’ve been a big poopy pants. No really. I’ve had some kind of bug that had me running to the bathroom constantly. I’ve been trying to loose weight but this was not the way I planned. I’m sure most of you can relate.
What most of you can’t relate to is how this virus affected the rest of me, namely my vestibular system. When something like this hits me my vestibular system seems to think it needs to attack me too. I was suddenly having vertigo while fighting a vicious virus, well poop. Running to the bathroom with the room spinning can be a challenge. (thanks hubby for all the help, sorry about the smell.)
Any kind of stress can cause a person with Meniere’s to have more vertigo. When my stress levels rise there is a strong likelihood I will have vertigo. When my body is under stress there is even a greater likelihood that I will have vertigo. A virus will often have my head spinning. If I don’t have vertigo when I am stressed at the very least my balance will be more compromised than usual…yes even more than usual, it really is possible!
What can I do? When I have a virus there isn’t much I can do about reducing my stress levels, but I can try. I practice deep breathing exercises, not only does this reduce stress, it helps reduce nausea. I sleep as much as possible. When your sick sleep is a good thing. Really there isn’t a lot I can do, so when the vertigo comes I ride it out the way I do every vertigo attack and hope it isn’t going to be a bad one. Luckily, the attacks I had during this virus were not very bad. As long as I stayed calm, practiced mindfulness, and relaxed as much as possible I was able to get through it with as little extra stress to my body as possible. This was very important, as I was really sick.
I’m pretty darn lucky that I have a great hubby to help take care of me when things like this happen. REALLY LUCKY!
Now it’s time to catch up on life. What’s up with you?
I keep being told by my therapist that I need friends. People I can spend time with, not just friends I text, email, message, blog with….. She wants me to have local friends. We’ve lived in this area for over 2 years and I don’t really know anyone.
My question for all of you is, How do I make friends?
I’m chronically ill, I can’t drive, I don’t go anywhere without my husband, I have a very hard time hearing in public places….
Where do I meet people who are willing to get to know me through all of those obstacles?
I don’t go to church. I did look for a Buddhist temple in the area and there are a couple of places, but they do not practice the type of Buddhism I do. I don’t think I’d feel comfortable there. It’d be like a Fundamentalist trying to go to a Catholic church, they are both Christians, but they are very different. (well it might not be that different)
I don’t work, so I won’t meet people there.
I don’t have kids so I won’t be meeting people through my kids.
I looked for a support group where I’d fit in, I can’t find anything. Before you suggest it, no I’m not going to start one, I would not be able to be reliable enough to do so.
I really think it would be best if I met people who have chronic illnesses, I think they would be more understanding of my “eccentricities” 🙂
My husband works in a small office where there isn’t anyone to really become friendly with.
I’ve met the neighbors on each side of me, one is an elderly couple who prefer to keep to themselves, the other is a family who are always busy. We don’t really fit in with either.
So, any ideas? I’m not adverse to meeting people, I just don’t know how.
My biggest problems are: I can’t go out alone, can’t drive, and my hearing issues.
Really, I’m looking for suggestions. Any body got any??
This past Saturday was our 12th anniversary. With my husband being my caregiver it is hard to find days where we can find time for just us without my illnesses playing a major part. Saturday was one of those rare days.
Recently I’ve been feeling pretty darn good. I have my days of not feeling well, my balance will be way off, and I’ll topple a lot, but for the most part I haven’t had any major vertigo attacks. That’s huge for me. I had a few days last week where I just didn’t feel good. I was afraid I wouldn’t be able to spend our anniversary out of my recliner. But I was surprised. I woke up feeling good, so we headed out for a day of adventure.
We had a few plans for the day. Stuart asked me what I wanted to eat on our special day and I wanted crab legs. So we found this little restaurant that is on a small lake. I love being close to water. I was such a happy girl when we were sitting there on the water I teared up. After our wonderful lunch we walked around the lake and watched the ducks. We took pictures and just enjoyed ourselves. We then went out of frozen yogurt. The whole day we flirted like teenagers. It was such a good day, but it wasn’t over.
We stayed in a hotel for the night. It had a big whirlpool tub, and was in the ritzy part of town. We decided not to go out for dinner we instead went to Whole Foods and loaded up on the Salad bar and went back to our room. That may not sound romantic but it was so nice to just curl up in bed with my hubby eating salad. 🙂
It was a very romantic day. We had planned to do more on Sunday but we were both exhausted from our anniversary celebration. We came home and just vegged. I slept sooo much. On Monday I was still paying for our little adventure and felt like I was catching a cold, but by Tuesday I was feeling well again. Which was great timing as Stuart had Tuesday off and we decided to go back to the boardwalk and just walk around and watch the ducks. We had ice cream outside enjoying the beautiful weather. It was a very relaxing afternoon. Sometimes even though I know I’ll pay the price later the price is worth it.
It is so very important to take the time to spend as much “us” time with your significant other as you can. My husband is my caregiver. Even when I’m too sick for days like Saturday (and Tuesday), we try to take some time for us. We may curl up and watch a movie together, or have a special dinner, just sit and talk…anything that makes things special. One big thing we do a lot is flirt with each other a lot. I am not able to follow through on a lot of my overtures but it doesn’t matter, he knows I want to. That is what is important. It’s important that even though we can’t be as intimate as we’d like as often as we’d like that we let each other know we’d like to, but it’s okay that we don’t. It’s okay that we just cuddle, that we are with each other, that we are so in love that not being able to have sex as much as we’d like isn’t going to come between us. And it makes those special nights in a hotel all the more special. 😉
Today marks the beginning of 
Picnic with Ants 