Dark and Silent – A day with a Migraine

On April 2, 2014 By WendyIn Chronic Illness, Meniere's Disease, Migraines6 Comments

When a migraine really takes hold of me, it’s time for a day with no light and no sound.

Take my medication and try to sleep. Oh but the pain, sleep just will not come. A tiny bit of light maybe? Oh no, not yet.

I must say I’m grateful that I can just leave my cochlear implants off and I’m in silence. I don’t have to worry about sounds sending me into an abyss of pain. My room is cloaked in darkness. I do have to have nightlights, they all point to the floor, showing as little light as possible. If you are like me and have Meniere’s Disease with hearing loss, you will understand why I must have some light. There are TWO main reasons:

First, I cannot walk in the dark. Literally, I cannot tell the direction I’m going in, often I can’t tell if I’m going up or down. Walking in the dark, is simply not something I can do. I haven’t been able to stand up in the dark for many years, long before I was diagnosed, or showed any signs, of having Meniere’s. I remember being told I was just thought to be a little off. I also get Migraine Associated Vertigo, another reason why it is not advisable to walk in the dark when having a migraine, even if I didn’t have other balance issues.

Second, I cannot hear in the dark. Let me explain. The only way I can hear…really hear anything, is with may cochlear implants. If I don’t have them on, I can’t hear. I have to see to hear. I have to read my husband’s lips or the little bit of ASL (American Sign Language) that we know. That’s the only way I can communicate. Yes, he could write things down, but I’d need more light to read it than I need to see his hands talking to me.

After taking my rescue medication, then my backup medication when that didn’t work…I finally start to have some relief. No I’m not pain-free, I’m just not lying on the bed with a huge ice pack on my head wishing that someone would just cut my head off! The pain has gone from being very close to a 9 (10 is going to the ER pain), to about a 6 or 7. Remarkably, this amount of pain I can deal with fairly well. Don’t get me wrong, I’m not bragging that I can take the pain…Oh no! This comes from the fact that I have Chronic Daily Headaches, so every day my headaches are on the 2-3 level. I don’t complain until it hits a 5, and only then because I know it will be getting worse. At a 5 I will often take something, but I need to be careful, I can’t take something if I’ve taken something for too many days in a row, this will cause rebound headaches. I never want to have rebound headaches! Before I knew about rebound headaches I took too much medication. I hurt, I took something, that’s the way it works right? But you can get to the point where your body says, OK, it’s time for you to hurt so I can have that pain medication. It’s strange. I know I’m not giving sound medical rationale about this, but that’s the way I think of it.

I’ve been told that today is a very beautiful day, with temperatures close to 80 degrees F. The sun is shining and the flowers are starting to bloom, a great day to take out the VW Bug convertible (that I got a few years ago, and now I can’t drive…but I still enjoy it). Instead of having a lovely day out with my husband, I’m closed up in my bedroom (I literally haven’t left this room in a week, or more. I’ve had so many migraines and vertigo taking the stairs is just too risky.)

I’m only able to write this in small increments with my computer screen dimmed as far as it can go without being black.

Why is the Botox not working? I have no idea. It normally takes a week for it to kick in, but it’s been over a week. I hope this doesn’t mean that this treatment has stopped working for me. I’m not sure what we’d do next.

Days like this…well the week like I’ve had, makes me feel so useless and..oh I don’t know how to say it, I feel like I’m just alive, but I’m not living. Understand?

If you have times like this, what do you do? How do you start to feel useful again? I feel it’s been so long since I’ve really been useful. So many people wish they could just lie around in bed all day, never having to do housework, always having someone to wait on them…..but I tell you, it’s not really what they want. Living like this is torture. I want to be able to cook and clean. Work in my studio. Have a Garden. But, it’s just too much on this body and mind of mine. I say figure out something small, but I’m out of suggestions. If I didn’t have this blog, and the blogs I follow….my friends in my computer, I would feel completely worthless. Thank you all for giving me that gift.

I apologize that the pain is talking so much today. May tomorrow be a more pain-free and steady day.

This is my brain on Menieres

On April 1, 2014April 2, 2014 By WendyIn Chronic Illness1 Comment

I can really relate! Extraordinary Spin-ster, a new blog dedicated to Meniere’s Disease, Anxiety Disorder, Panic Disorder, and ADD….be sure to check it out!!

I can really relate! Extraordinary Spin-ster, a new blog dedicated to Meniere’s Disease, Anxiety Disorder, Panic Disorder, and ADD….be sure to check it out!!

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BraveHeart Award!

On April 1, 2014April 1, 2014 By WendyIn Chronic Illness7 Comments

I have been nominated for the Brave Heart Award by former winner, Madelyn Griffith-Haynie, MCC, SCAC of ADD and so much more. Madelyn is an ADD Advocate, ADD Coach and Mentor, and ADD Poster Girl”, but she is so much more! Madelyn not only helps those with ADD, she helps others (like me) who live with someone who has ADD…and again, she does So Much More! Madelyn is not only a survivor of abuse from many people who just don’t understand living with ADD…and more, she is also a survivor of a vicious attack. She and a friend were mugged at gunpoint. With bones and bodies healing; it was time for a realization that these attackers hurt more than her body, her mental health was also hurt. She is a strong survivor of abuse!! Please read more about this wonderful woman, how she has been dealing with the aftermath of her attack, and how she helps so many with ADD world…and so much more! Thank you Madelyn, you are a great inspiration!

Remember you can find Madelyn at http://addandsomuchmore.com

Rules for Accepting the Award

Thank the person who nominated you.
Take the 12 question interview and share it on your blog. (see my interview below)
Nominate 12 blogs. (my list of nominees are at the bottom of the post)
You cannot nominate blogs that have already won the Brave Heart Award.
Share your 12 nominees website/blog links on your blog page.
Include the Quote below with the notification to your nominees.

Madelyn formatted this to be ADD-friendly – it has “shorter paragraphs and (is) slightly adapted” — I used this version to be able to nominate those dealing with chronic illnesses (both physical and mental) – “abuse that results from the actions and comments from the many who simply don’t understand. The original version contained the word “abuse” alone, which has a more specific meaning to those who have been physically or sexually abused – or to those diagnosed with PTSD.” The original version can be found at the bottom of this post, right before the list of my nominees. (the words in quotations are Madelyn’s words.)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Stand Strong You Are Not Alone

I call you a survivor, because that is what you are. There are days when you don’t feel like a survivor and there are days when the memories trigger your past and it feels like you are losing the fight – but you are not. Take the past and heal with it. You are strong.

I want you to know that any abuse you experience as a result of your diagnosis is not your fault. It does not matter what age it happened. You did not deserve it, you did not cause it, and you did not bring it on yourself. You own no shame, guilt, or remorse.

In your life, you have faced many demons, but look around you and you will see there is hope and there is beauty. You are beautiful, You are loved, there is hope.

You deserve to be loved and treated with respect. You deserve peace and joy in your life. Don’t settle for anything less than that. God has plans for you. Your future does not have to be dictated by your past.

Each step you take you are not alone. Stand Strong.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

12 Interview Questions:

1.Tell us a little bit about your blog. Who designed it?
2. What is the title and description of your blog?
3. Who is your intended audience?
4. How did you come up with the title of your blog?
5. Give us an interesting fun fact about your blog.
6. What other blogs do you own and what makes them alike?
7. Do you have any unique talents or hobbies?
8. How can we contact you or find out more about your blog?
9. What can we expect from you in the future?
10. What can readers who enjoy your blog do to help make your blog more successful?
11. Do you have any tips for readers or advice for other writers/bloggers?
12. Before you go, could you share a snippet from your blog?

First – Thank you Madelyn for nominating me!

The answers to my interview questions:

1.Tell us a little bit about your blog. Who designed it?

I used a template from WordPress to design my blog. It takes me forever to go through all the Themes and find just the right one that I think fits just right. I don’t want my blog to be too busy. I like a Custom Header of some size, and a Custom Background. I update the look of my blog about once a year. Right now I’m using the Yoko theme. I found an black and white image on line that was free to use and changed it up a bit with Photoshop. (I cropped it, changed small things in the image, changed the background color, and added the ants). At some point I may pay to change this to my own domain instead of using the free WordPress options, but right now, this works for me. (when working on changing the look of my blog I have a private blog that looks like this one and do all the tweaking there, then I change things on my real blog easily and no one is bothered by my constant changing to get it just right.)

2. What is the title and description of your blog?

The title of my blog is Picnic With Ants. When I first started my blog it was just to help me deal with what was happening to me. (the rapid progression of Meniere’s disease.) I also wanted to talk about the other chronic illnesses I have. There are a few Tabs at the top of my blog that you can check out to learn more about what my blog is all about. This blog has grown because I found I was reaching people who suddenly found they were not alone. Just helping one person not feel alone when dealing with chronic illnesses, is worth all the work I put into this blog.

3. Who is your intended audience?

Oops, I kind of answered this in the last question…..but I’ll be more specific. My intended audience is anyone who has a chronic illness (physical or mental), even if it isn’t one of the illness I have, there is a comradeship found with those who deal with illnesses on a daily basis. Hopefully, this blog can also help those who care for and love people with chronic illnesses. Truthfully, I started this blog to help me, I was the intended audience. That has grown, still I write to not only help others, but to help me deal with my every day struggles as a person with chronic illnesses. I invite others to join me on my journey and share their stories with me.

4. How did you come up with the title of your blog?

I came up with many titles before sticking with this one. I actually got suggestions from friends and had a poll for the most liked name, and Picnic With Ants won. It was too difficult to come up with a name that covered everything that I wanted to talk about on my blog. As I tell in the sidelines, I like to think of my life as a wonderful picnic, then the ants come and bite me in the butt! (the “Ants” are my chronic illnesses).

5. Give us an interesting fun fact about your blog.

Let me think……an interesting fun fact. I laugh a lot and share this with my readers. I share the good, the bad, and the very ugly. I think some people are shocked at some of the things I’m willing to share, but that’s a part of this life. A fun fact…despite being disabled due to my chronic illnesses, and at times mostly house bound, I normally find humor in every day. I share much of this with my readers. My husband and I have the most loving and amazing relationship! We giggle and laugh…A LOT! There is much miscommunication due to my hearing loss….for example, I once thought I heard him say that Jesus was Jimmy Buffett!

6. What other blogs do you own and what makes them alike?

I have 2 other blogs that I used to keep up with very diligently, but as I have had to start dealing more with my health, I have let the other blogs go. One is called Create to Heal…it is about being creative to help in the healing process. I am a trained artist, and I believe creating makes people feel better. Often it can help you say things that you can’t say with words. I still create art and write, but I do not have the energy to work on blog posts to share this with others. My other blog is called Wendy Cooks….it’s about cooking while have Fructose Malabsorption and Gluten Intolerance. I haven’t been posting in this blog because my balance issues and vertigo have made it impossible for me to cook on a regular basis (I hate to admit I’m not cooking any more because I love it) How are these blogs alike??? They all deal with illnesses and healing. Reaching out to others and sharing how I deal with being sick.

7. Do you have any unique talents or hobbies?

I’m an artist. I can’t do everything I used to, but I still draw in pencil and ink, I also paint. My husband says I have many talents that I just don’t think I see….so perhaps he’d be better at answering this question…..hummm that might be a Too Much Information Moment. *giggle* Hobbies…I love to read, write with dip calligraphy pens….I’m trying to learn more about calligraphy, make up silly songs about our cat and things around the house, watching cartoons……let’s say I try to stay busy.

8. How can we contact you or find out more about your blog?

I guess the best way to find out more about my blog is to just look around. Comment, and ask questions. If you want to contact me directly check out my About Me page and for more information. I’m always happy to hear from people.

9. What can we expect from you in the future?

Hopefully a lot more posts. I want to talk more about the different chronic illnesses I deal with, instead of focusing primarily (almost exclusively) on Meniere’s Disease. More of my artwork to go with posts. Hopefully, more guest writers who can share their stories and give hints on how they handle day-to-day life. I also plan to talk more about how people with any type of illness can deal with life in general. (Hygiene, Oral Hygiene, Sex, Food, Stress Reduction…..ect.) If there is any subject anyone wants me to cover please drop me a line and let me know.

10. What can readers who enjoy your blog do to help make your blog more successful?

Make sure and let me know what you enjoy the most. Tell me what you would like to read more about. If you have something to share, please reach out and do a guest post. Share with others that you found a blog you really like. : ) Mostly, just keep me informed, if I start to be boring don’t just drift away, tell me…..I may need a kick in the pants! Who knows I may just need to know someone out there cares about what I have to say! And always click LIKE if you like a post. Comment if you want to hear more on the subject. Share with others so I know many are interested.

11. Do you have any tips for readers or advice for other writers/bloggers?

Speak from your heart. Even if you have a humor blog, make sure you are sharing humor that touches you. Read. If you like to write, you have to love to read. If you want to grow your blog, visit many blogs, like a post so the writers knows you were there, follow blogs that interest you….it all comes back to you. The biggest advice I have for writers is to reread your posts and edit your grammar and spelling. (this is something I think is very important, but something I often don’t find myself doing….I promise to do better) If your blog is important to you, that should be all that counts. I write because it helps me. I continue to write publicly because I feel my writing has helped others in some small way. Just as other blogs have helped me.

12. Before you go, could you share a snippet from your blog?

One post on my blog that has meant so much to me is My Songs Of Silence.
This was part of the WEGO Health Activist Writers Month Challenge in 2012. At the time I was losing my hearing pretty fast (I’m deaf now), the challenge for the day was to create a song for your health focus or your blog. I could no longer hear music….but I must say, I think a friend of mine and I came up with a pretty cleaver theme song. I hope you enjoy it.

The original version of Stand Strong You Are Not Alone

Stand Strong You Are Not Alone

I call you a survivor, because that is what you are. There are days when you don’t feel like a survivor and there are days when the memories trigger your past and it feels like you are losing the fight – but you are not. Take the past and heal with it. You are strong. I want you to know that the abuse was not your fault. It does not matter what age it happened. You did not deserve it, you did not cause it, and you did not bring it on yourself. You own no shame, guilt, or remorse. In your life, you have faced many demons but look around you and you will see there is hope, and there is beauty. You are beautiful, You are loved, there is hope. You deserve to be loved and treated with respect. You deserve peace and joy in your life. Don’t settle for anything less than that. God has plans for you. Your future does not have to be dictated by your past.

Each step you take you are not alone. Stand Strong.

My Nominees

In no particular order.

To all my nominees: You are some of the bravest people I know! I am honored to know each and every one of you. I know many of you may not be able to do everything required to receive this award, but know, in my heart, you are all Brave Warriors!!

Phylor’s Blog: Pain, Poetry, Bipolar, Prose (and a little bit of whimsy..)

Soul Comfort’s Corner: This lovely lady deserves this award. I have learned so much about her over the time we have followed each others blogs and emailed each other. I know she won’t accept this award, because she doesn’t do things like this….but I wanted her to know how much I think she is a BRAVE HEART!

Hibernationnow’s Blog: Life with Fibromyalgia, and so much more….

Bipolar BarbieQ : Writing about Bipolar, and life

Lipreading Mom : Hard of Hearing, Deaf, Bullies….

Another Boomer’s Blog : Hard of Hearing, Deaf, ASL…..

Extraordinary Spin-ster!: Meniere’s, Anxiety Disorder, Panic Disorder, and ADD

Meniere’s Warrior : Life with Meniere’s Disease

Miss Crabby Ass : A Bipolar Lady

Adventures of a Deaf Adult : Deaf, Hard of Hearing, Cochlear Implants

Sunshine and Chaos: Living with Invisible Chronic Illness

Taking Life for a Spin : Living with Vertigo and Chronic Illness

Self-Care Cheat Sheet – repost from Honor Yourself Now

On March 20, 2014March 20, 2014 By WendyIn Life8 Comments

I found this wonderful post on Honor Yourself Now. It’s for everyone, not just us chronically ill peeps. There are some things you may have to adjust depending on your abilities.

For example, I can’t exercise. But I can couch dance to something silly on the TV, I can sometimes go downstairs, or just walk around the room. That’s moving it for me, I’ll even sing in my head – “You’ve Got to Move IT!” (don’t you love that song from Madagascar?

I do try to laugh each day, really I don’t have to try, my husband and I are pretty silly. That’s a big for me. I believe in not being too serious about things all the time. Seeing the levity in a serious situation has gotten me though a lot of hard times.

So take care of yourself!! I say, take some time and pamper yourself a little too.

Self-Care Cheat Sheet.

Please click on image to be taken to the original post on Honor yourself Now

A Tiny Bit of Independence Restored.

On March 19, 2014 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 Bipolar….will I ever really be stable?

On March 10, 2014 By WendyIn Chronic Illness, Mental Health20 Comments

Note….At this time one of my medications has stopped working, my psychiatrist has replaced it with another medication, but at this point, I am not stable. I have recently read through the past year of my blog and my personal journals and feel I haven’t been completely stable for a long time, but I have been manageable….most of the time. When I reference Bipolar Illness below I am referring to Bipolar I. There are different types of Bipolar, when you think of classic Manic Depression, you normally think of Bipolar I.

This post is going to come from the heart, and will reveal things I haven’t freely talked about outside of my therapist’s office.

From all the tests, and talking, and everything else psych doctors do, my psychiatrist feels I have had Bipolar tendencies most of my life. My first suicide attempt was at 11 years of age, but it wasn’t the first time I thought of it. It just isn’t right for an 11-year-old to think that dying would be for the best. I remember my sister and I had been arguing….I think…I don’t remember what it was about, or if it really even happened. I guess that wasn’t important. I know I silently went into my parent’s bedroom, they weren’t at home, I opened the top drawer of my father’s chest of drawers and took out his pistol. I knew nothing about guns. It was in a little holster thing. I don’t think I even took it out….after all, wouldn’t a bullet go through that leather? I put it to my head and pulled the trigger.

Nothing happened. I tried again……Nothing. By this time I was shaking and thought my sister might find me, I replaced the gun right where I found it, after all it didn’t do me any good. I don’t know if the gun was empty, if the safety was on…or what. All I know is that it didn’t do what I thought it would. What I wanted it to.

How can an 11-year-old child be so depressed that she puts a gun to her head, and pulls the trigger? Was I scared, yes. But not because of the reasons you may think. I was afraid of being caught, afraid of doing it wrong, and very afraid of who would find me and have to deal with the mess.

I didn’t tell anyone. Not for years and years, actually, not until recently. Since then I’ve had 3 more suicide attempts and serious thoughts and plans for others. When I’m depressed I simply cannot believe it will ever get better. The lady in the dark is whispering her promises that it will be better with her, and she is all I can hear.

When I’m more level, or a bit manic, I cannot believe I would ever think that way. I even have a hard time when others are feeling suicidal. How could that be? I have had a number of friends reach out to me when they have felt the cold comforting hand of death reaching for them and they are so very tempted to reach out and take hold. I often just can’t understand how they could feel that way. They have friends, they are loved…look, they have me. But didn’t I have friends? Don’t I have friends? Was I not loved? Then why…why can I feel it would be so much better if I simply didn’t exist? Please don’t get me wrong, I can empathize with my friends who are going through their own darkness, I talk to them and understand their feelings…or at least most of them. But feeling suicidal is very personal, each person has their own demons. I know I can’t understand all my friend is feeling because their demons are their demons and I can’t hear or see them. I can only see the light on the outside, and try to help them see a little glimmer of that light, just enough to give them a bit of hope. However, I would never judge a person who cannot find that hope….that flicker of light that they need to help them out of the darkness.

Many people think ill of those who commit suicide, and even those who have fought the battle and continue to fight. I’ve heard how it’s the most selfish thing someone can do. How they are doomed to everlasting hell. I don’t think like that. I know many people who contemplate suicide do so because they think they are such a horrible burden on the people they love. They are trying so hard not to be selfish. They do not want to cause those they love any more pain. Yes, the pain from the suicide is something a loved one cannot get over, but to the person who is deeply depressed and sees this as the only way to save their loved ones…it is the most selfless act they feel they can perform. Do I think someone who commits suicide is doomed for everlasting hell….no, personally I think they have already been living in it or they never would have committed suicide in the first place.

Suicide is not performed by people who are mentally well. I will never judge a person until I have lived their lives while looking through their soul. A mentally ill person does not see things the way a healthy person does. My views on suicide are just my own. Please do not judge me. And please, at this time, do not argue with me….I’m not even sure I could handle a grown-up discussion of different views. You see, I’m having trouble with my medication, and I’m not stable. I need to release some of these feelings, but I’m not stable enough to debate them. I promise, when things are better, I will open this discussion up again, if anyone wants me to, and we can discuss it then.

Oh, the Bipolar…..That is what I started to talk about isn’t it. It isn’t all about the depression that takes me to the depths of my own hell. There is that other side, the euphoria of mania. It can be so seductive. Many people who are Bipolar I, will often stop taking their medication because they feel numb. No, they don’t miss the depression, but the mania….it’s like a drug. Some of the best artist (of all kinds) have been Bipolar, or more as it was more commonly known, Manic Depressive. When one decides to go off their medication, I don’t think they think about the depression that seeps the life out of them, they are thinking of the high they get from the mania. Speaking from experience, it is so very hard to feel that high of creation when you are taking your medication. I used to have sparks of inspiration and spend days in my studio, never leaving, barely sleeping….painting, and painting, and painting….I have never felt that surge of creativity since I started my medication nearly 20 years ago. Do I miss it? I could never express into words just how much I miss it! I do not believe I have created a piece of artwork that stands up to anything I created before I was diagnosed. So yes, I miss it. But do I miss it enough to risk the rest….NO.

Bipolar doesn’t just include the extreme lows of depression and the euphoria of mania….it also includes uncontrollable anger, confusion, for some a loss of time, and a myriad of other symptoms…always to the extreme. I used to notice when I got happy from something, it simply didn’t stop. I didn’t just get happy, it kept growing and growing….oh it’s so hard to explain, but that’s how I felt about most of my emotions. The emotion would start, like any normal person’s emotion would, but my emotion wouldn’t stop….it grew, to the point where I felt the emotion was no longer mine, I was the emotion. I have huge gaps where I simply lost time. I have no idea what happened during that time. There have been out of control arguments, but I can’t remember anything about except the anger.

When I first started getting serious with Stuart I decided I had to be honest with him if we were going to have a real relationship. It was very hard to tell him I have a mental illness, I am Bipolar. Due to this, I have no idea how many men I have slept with. He took it like the man he is, with grace and sympathy. He held me while I cried and explained more about my illness. How I was being treated…ect. (He is a very good man.)

There is much more to my story, some I can never tell, because I simply do not remember it all. Some I can tell…perhaps I should write a book. *smiles*

Please forgive any typos, or grammar errors…or anything like that. I started to proof-read this and needed to stop. If I have offended anyone I apologize. I hope I have brought a little bit of understanding about what it means to be Bipolar I. Or what it means to be me.

Blogging Brings out the Best of Me!

On March 6, 2014 By WendyIn Chronic Illness5 Comments

The prompt from BlogHer today is “Does blogging bring out your best or worst self?” This was an easy one for me to answer….Blogging definitely brings out the Best of Me!

The Best of Me! photo taken Aug.2010 — The Best of Me!
photo taken Aug.2010

As any long time reader of my blog knows, I tell all the details of my illnesses, I don’t sugar coat it, but blogging helps me put it all in perspective. The people I’ve met through my blog encourage me, support me, and have made me want to be a better person. A better advocate for those with the same illnesses. A person who doesn’t give up, one who always strives to make life better….even if there is no way to make an illness better.

When I feel down about things, I tell about it here, but by telling it here makes me want to feel better about things. I don’t like it when I feel I’m not handling things well. A friend says that she will “Fake it until she can Make it.”, meaning she will Fake feeling good until she really starts feeling better. We both realized that when we catch ourselves slipping into that dark, sad state, if we try to keep our thoughts positive, we will soon feel more positive. No, it doesn’t always work. But it works enough that I keep doing it, and have noticed a big difference. (I must note here, I do have a mental illness, Bipolar I, therefore sometimes it doesn’t matter how much positive thinking I may do, nothing can help if my medication isn’t working.)

Blogging makes me stretch myself. I think about things I may not normally consider. I dare to write about things I may not have even talked about before. Why? Because I know there are others out there who are going through the same type of things I am, by telling my story, in detail, I might reach someone who really needs to know they are not alone.

Having multiple chronic illnesses has reduced my self-esteem immensely. Through blogging, I now feel I have something to offer, my experiences, and I have found I can write pretty well. No, I’m not the greatest writer, and the way I write may not appeal to everyone, but some people really find my writing interesting and easy to read. I’m thrilled to learn this and hope I can continue to reach those who may benefit from what I’m writing about.

Blogging makes me accountable, it makes me follow through on what I start….most of the time…if I tell my readers I’m trying something, I do it!

One day I decided to start a blog, an on-line journal if you will, to keep up with everything I was going though…..then one day someone took the time to email me about what I had written. She told me how alone she had been feeling, and how my blog had helped her. After that day, each time I write I think about how my words may reach someone who needs to hear just what I’ve written….Yes, blogging brings out the Best of ME!

The hardest thing to hear….”There’s nothing more we can do.”

On February 27, 2014 By WendyIn Chronic Illness, Meniere's Disease19 Comments

I haven’t been posting on a very regular basis because I’ve been having daily vertigo. Sometimes it’s a short bout of spinning that I can handle pretty well, other times it has been the horrific bouts that cause me to throw up for hours, and lose all bodily functions. (I know you’ve heard the details before, I’m sorry for the graphic description)

Daily vertigo is so draining. The constant disequilibrium is one thing, but the vertigo…it’s the most debilitating thing that has ever happened to me. To have this just hit me out of the blue, leaves me with such fear. This past week I’ve woken up with vertigo at least 3 times. One time I was on the verge of throwing up, and I admit, I completely freaked out. That bothers me so much. I have been keeping my cool through the attacks, but then that happened, and I’m terrified. How can I feel comfortable ever leaving the house when I know that daily I have these attacks?

We can’t be sure if the vertigo is being caused solely from Meniere’s, I also get vertigo from the Idiopathic Intracranial Hypertension (IIH), and Migraines. I saw my otologist (ear doc) yesterday and told him everything that has been going on…..he was so distraught. There was another doctor in the room with him from Turkey, and both agreed, there is nothing that can be done.

Some people have said I could kill the balance nerves, but that is not an option for me. For a number of reasons. At my age, it’s almost impossible to learn to balance with just your eyes…and when they say that you balance with your “just” eyes that’s not really right, you use the balancing nature of your muscles, bones, ect. It’s easier to do this at a young age, children can often overcome the loss of balance from the ears. But this 50 year old woman who has been using her ears to help balance for her whole life, and who has trouble with her hips and pelvis so her gait is off, well I would almost definitely end up bed bound having vertigo constantly. I’ve never been so overcome with emotion. I just cried, I had a very hard time composing myself. My doctor looked so tortured and kept saying he was sorry. I told him he didn’t cause my ears to be like this, but I know he wants to help. It hurt him so much to tell me he just couldn’t help. He told me if he finds out anything that might help he will call me immediately. I know how much he cares, and it pains me that my illnesses has made him feel useless.

I feel odd today. I’ve felt so defeated and depressed lately. It’s simple, I just didn’t feel I could continue to exist like this. When you feel your life is only just existing, and that existence is completely miserable, then why are you existing at all.

Today, after learning there really isn’t anything medical that can be done, I actually feel like a weight has been a bit lifted. I know I have to deal with this, I can’t just keep thinking that there must be something that can be done. I’ve come such a long way in dealing with my vertigo attacks. Often, I can stop them from getting to the most horrific stage. It’s difficult, and it’s challenging, but it’s helpful. I’m still stuck being very still, not allowing myself to look beyond an article just in front of me (if I focus further away I will spin harder), trying to stay calm, taking deep breaths, and telling myself over and over that it IS NOT REAL. Of course, getting the meds in me as fast as possible has helped a lot too. So now I know what I have to deal with.

I know stress is making things worse and my normal exercises that I have come to rely on to reduce stress is not working, so I have to do some research and try something new. I’m thinking about hypnosis, after we have income coming in. I have a focus now….what can I do to reduce my stress? The stress of:

my husband being out of work since April 2013, and me not being able to work.
having my disability denied and now that we are in the appeal process they are saying it will take over a year before my case will even be heard.
my father just started treatment for liver cancer
the continued asthmatic symptoms without being able to get much relief.
an increase of migraines….is Botox no longer working, or are the migraines being caused by the IIH
an increase of IIH symptoms
breaking my foot
not feeling stable at all. Not knowing where we may end up, not knowing what is going to happen…this is not good for me. I do not do well when I feel like my life is up in the air.
not being able to be intimate with my husband…and yes, even with everything that is going on with me, I would like that part of my life back.
……….that’s enough to list isn’t it? yet, yes I can think of more. (Deep Breath!! In…Out…repeat) OK, that’s a little better.

How do you handle stress? Any suggestions. I’ve done a couple of things, but more needs to be done. My stomach hurts all the time….this cycle has to be broken.

An Accident leads to overcoming a fear…

On January 28, 2014April 5, 2014 By WendyIn Chronic Illness, Meniere's Disease6 Comments

x-ray of right foot poster image from allposters.com — x-ray of right foot poster
image from allposters.com

On Monday, January 20th, my husband left for Las Vegas (I’ll explain more of this later if anything comes from it). He left the house at 11am, his flight was supposed to leave at 1pm but it was late. By 2pm he was on his way, and by 3:30pm I had broken my foot.

I keep thinking how nervous I was about him leaving on this trip. He’s been away before and yes I was a bit nervous, but this time I was scared. I just didn’t feel good about it. Perhaps it was because of the many asthma attacks I’ve been having, perhaps it’s because I realized just how phobic I have become about so many things….I don’t know…but I know that I’ve had feelings like this before, and they seem to be almost premonitions. Something didn’t feel right….and soon something big wasn’t right.

How did I do this? Well, let’s see if I can explain, I had to explain it over and over and over…but I will admit here, I’m not 100% sure exactly how it happened. When Stuart is out-of-town we move my essentials downstairs, so I won’t have to use the stairs while he is gone, I have plenty of food in the fridge, and I’m all settled on the couch. Oh, and one big thing, I promise not to try to walk around the house without my walker, just in case vertigo hits out of the blue, or the disequilibrium knocks me off my feet. (we all know this has happened….often) So, I got up to go to the bathroom, wheeling along with my walker. Unfortunately, our bathroom doors are TINY, and we haven’t been able to find a walker that will fit through them, so I leave my fancy walker at the door and hand off to another walker in the bathroom. The walker in the downstairs bathroom has little wheels. The walker in the upstairs bathroom doesn’t have wheels, I’m used to it. I caught my foot on the little wheel and was thrown off-balance a bit. The world swirled and I stepped sideways and fell up against the wall, only a few inches away, I just kind of leaned up on the wall but my foot turned, and I felt a SNAP! I’m really not sure which foot hit the walker, or anything, it happened so fast, and I was far from being stable.

I knew somewhere in the back of my head that it was a break. But I didn’t want to admit it. I often turn one foot or the other, it always hurts, often swells a little, but is alright. I just ice it over night and the next day it’s better. So I packed it in ice and elevated my foot. Then I looked at it, and it looked a bit too puffy….getting a little blue. I touched it, it just didn’t feel right. Dangit! I was a bit paralyzed as to what to do. Call an ambulance? For just a broken foot? Ugh! And trying to talk to a 911 operator when you can’t hear them…well that was scary…but really I just couldn’t bear the thought of calling an ambulance for a broken foot. That’s not an emergency. I could feel my toes, they weren’t blue, I had sensation all over my foot….not an emergency. And I was still a little bit in denial. “Maybe it was a tendon just snapping over the bone. It might just be a bad sprain….” But as the night went on, I was more concerned. I instant messaged a friend who I knew would help if he could, and he would at least calm me down. He did calm me down, but he couldn’t come help, I understood, he has a pretty severe chronic illness himself and lives about 2 hours away. Finally, I saw an old friend who I hadn’t seen in a long was on-line, so I gathered my courage and instant messaged her and asked if she could help me. That was very hard. She has a family of her own, a 3-year-old little girl….a busy life….and we haven’t kept in the best of touch. Don’t get me wrong, she hasn’t forgotten me, she surprises me with cards and such, and we see each other on Facebook, but it hasn’t been the same since I’ve gotten so ill. I haven’t seen her in person in a very long time, we don’t have long phone conversations, it’s different. I asked if my foot was all swollen and blue the next morning could she take me to Urgent Care. She said, “Yes!” So the next morning I texted her…I had to go.

Another fear I had to face, going out in public. Since I’ve been having so many asthma attacks I’m very scared to go out in public. So many triggers out there, and only my inhaler to help. But I did it. We went to Urgent Care, and it was FULL. A minimum of a TWO HOUR WAIT to be seen, not including if you need x-rays and such. So we ended up down the street at the Emergency Room. I was seen right away. Then sent to X-Ray. Then taken to a room…in the children’s ward (that was strange, but I guess they had an empty room there). The doctor looked at the X-Ray and said I had a spiral fracture of the 5th metatarsal (right above my pinky toe), she said I had to see an Orthopedist specialist. Then they wouldn’t let me eat or drink anything. I was there for 7 hours at least. Finally, the Orthopedic Surgeon came. He decided surgery wasn’t necessary, and I could have a boot instead of a non-weight bearing cast. I didn’t realize that there was a possibility of surgery, but I was so ready to get out of there, and I could tell my friend was anxious to leave, I didn’t even ask….just let me go. Later I looked at all the paperwork, and there was a possibility I needed a pin in my foot since it was a spiral fracture. They discussed putting me in a non-weight bearing cast, but decided not to because I would be at home alone. If they put me in that kind of cast they would have kept me at the hospital until my husband came home. After a little research I’ve learned this is the most common broken bone in the foot, and it takes a long time to heal because there isn’t a lot of blood flow to that area….*sigh*. I’ll have x-rays again in a couple of weeks if it’s healing well – great, if not, surgery could still be a possibility. I have faith all will heal just fine.

Whew! What a day!! After I got home and all alone, I realized I needed a change of clothes from upstairs, and someone needed to take care of Max, our cat…..so again, I overcame a phobia…I reached out again for help. I texted my neighbor, she has a key in case of emergencies, and asked if she could come over the help me a bit….I’m a lucky person that I have a neighbor who is such a dear. I cannot say how much I love and respect this woman! It took a lot for me to ask her for help, but she came! She helped, and even just visited with me for a bit.

Stuart came home the next night. I had taken care of an emergency! Somethings I probably could have done better, but I did it! And I’m pretty proud of myself. Stuart is less tense about leaving me alone now. (FYI..I did tell Stuart what was going on while he was on his trip. I thought about not worrying him, but that’s not the way we are, we communicate about everything, and it made it easier.)

Sometimes no matter how prepared you are, something might happen you just didn’t expect and you have to deal with it. No matter how scared you are.

Why don’t they listen?

On January 13, 2014 By WendyIn Chronic Illness, Deaf, Health Care5 Comments

I read about this a lot, and I wonder about it myself….when we go places, especially to the doctor and we tell the staff that we need special attention to be understood, or to understand….or to walk, ect… Why do we have to say it again, and again, and again!

image from www.someecards.com — image from http://www.someecards.com

Why don’t they listen to what we say? It has always bothered me, even before I became as ill as I am, that first you would fill out all the paperwork stating why you are at the doctor’s office, then you have to go over it with the nurse, then again with the doctor….why don’t they just communicate? Do they think I’m lying? “If we ask her the same questions over and over we might get different answers.” Just talk to each other, and listen to your patients, please.

Now that I have issues that must be addressed for me to get what I need from a doctor’s visit, it’s worse. I try to be very understanding about people forgetting that I can’t hear, or that I have balance issues and use a walker, therefore I walk very slowly. I realize that humans take a long time to develop habits, and most nurses and staff I see change a lot, or I don’t go to their office much, under these circumstances I do my best to pleasantly remind them, over and over, that “I can’t hear you, I need you to look me in the face so I can read your lips, and I need you to talk slowly.” They will say they understand, but then they will look at their computer and talk instead of talking to me. Often I will just act like they said nothing to me. My husband will turn and tell me what they said and I will answer, “Oh, I noticed you were speaking but since you weren’t speaking to me I thought you were talking to my husband.” I get a blank look, then a light bulb….OH yeah! She’s deaf. Then they do it right for a question or two, then it goes back to talking where I can not understand. A friend of mine who writes at: Another Boomer’s Blog, says she wants a shirt that says DEAF on the front and STILL DEAF on the back! Yep, Still Deaf. She also has some great posts about this subject, you should really check her out, especially if you have hearing issues.

As I said, I do understand that most people are not used to dealing with people like me. They aren’t used to dealing with the deaf, and they aren’t used to dealing with someone who has to walk slow with a walker, or suddenly sit down because of balance issues. Yes, I have nurses try to show me to my room and just take off and leave me. I just say, “I’ll get there sometime.” If they turn a corner, I sometimes just stop. When they return, I simply tell them, “I didn’t know which way to go, I couldn’t see you.” I really don’t mean to be rude, and I am compassionate, they are used to doing their job one way, and I’m asking them to change. However, what happened to customer service, why are people not mindful of what they are doing….everything they are doing? If a patient comes in, you pay attention to their needs, PERIOD. Just as you should for any person you meet. (you open a door for someone who needs it, you pick up something a child dropped…..you help people out when you see it, why doesn’t this happen all the time? Or am I just assuming most people would treat strangers like that?) We need to pay attention to others. Show love and compassion, why do people often have to be the “squeaky wheel” before they are paid any attention to?

At my otologist’s office I do not accept that the staff is not trained to deal with people who are Hard of Hearing or Deaf. When I check in, they are looking at their computer….these same people have been working with me for over 3 years, I normally check in with the same person, he knows my name, he knows my husband’s name, but he is not trained to deal with a deaf person. He does finally understand, and he moves his mouth more clearly than the other front staff, that’s why I try to check or out with him. But why are they not trained better? I have one nurse who normally works with my doctor, she is a dear sweet person. She really cares. Sometimes she will slip up and speak while not looking at me, but she usually catches it and quickly changes. Also, she will come and get me in the waiting room, the other nurse that calls me back occasionally, just calls out my name. I can’t hear her! Why does it not say in big red letters on my paperwork, DEAF….and any other instructions they may need. Why?

I had a test performed a couple of years ago at a different hospital. I had to check in and I was shocked at how trained the check in person was. I don’t know if everyone there was as great as she was, but she said they all had training on how to deal with certain situations. She spoke clearly, looked at me, marked it on my chart that I could not hear and would need assistance. My husband was with me, but that didn’t make a difference, they treated me like I was the patient and I had needs, they didn’t treat me like my husband was supposed to pick up the slack for me. This hospital assigned a volunteer to walk me to my testing area, to stay with me until I was called back, she escorted me to the room I was to be in and explained to the person performing the tests about the situation. You could have blown me over with a feather!

So now, I ask why? Why don’t people listen to us? (no matter what your special need) Why aren’t more people trained like the staff at the other hospital I went to? Why aren’t we all more compassionate towards others?

Yes, people should understand when we need special arrangements so we can be less disabled and more independent. Not only that, but we need to get the same care any other person would, that is our right.

On the other hand, we also need to give people some slack, no I don’t mean the whole rope…just help them learn. Think about the person who is treating you this way, how have they been trained? How hard would it be for you if you were in their place to suddenly have to do everything different from you are used to? What if this person has just dealt with an emergency and they are still shaken up but trying to do their job without letting you see it? There are just so many things that can contribute to why someone isn’t understanding about what we are going through. Don’t get upset….at least not at first….realize, it’s not about you, it’s the fact that they are human and humans are not used to change, and we simply don’t get it all of the time. Try to pleasantly remind them what you need.

My husband used to always step in and try to make things right, but I want to understand the doctor and nurses myself, I don’t want to need him to always be there….plus, I’m not sure he always remembers everything they say. So I started telling him to be quiet unless he was asked something, or if he needed to ask or input something (he is my caregiver after all), but if he talks he will have to stand by the doctor so both of them can face me, so I can hear both of them at the same time. No more him beside me, and the doctor in front of me. There are types of interpreters that I can request to help me at the hospital or doctor’s office, I will explain these in a later post, and why I haven’t taken advantage of them.

I have found that simply not answering, or acting like I’m lost because I can’t keep up, has helped. Just asking again doesn’t seem to do it most of the time, but if you make it harder for the person who is learning how to deal with you, then they are more likely to change their ways faster.

Of course, some people will never learn.

and often the people closest to us are the hardest people to understand a lot of this….but that’s for another post.

Picnic with Ants

Tag: chronic illness

Dark and Silent – A day with a Migraine

This is my brain on Menieres