Sending the wrong message??

On May 19, 2014 By WendyIn Chronic Illness8 Comments

I started this blog because I needed it.

I needed to put a voice to my illnesses. To help me get through.

I continued this blog because I felt it helped others. It helped them to know they were not alone. It helped to know that just because you have a chronic illness it doesn’t mean your life is over. I thought I was sending a message that said, yes, this is all a part of me and I’m alright with that. I have multiple chronic illnesses, some are invisible, some are not so invisible. I work very hard not to dwell how my life has had to change because of my illnesses, I strive to focus on how happy my life is now.

I wanted to help others realize that their lives can be pretty darn great too.

Recently, it has been pointed out to me that I have failed.

Not only have I not succeeded in showing people I am satisfied with my life, I have failed in helping others realize they can be happy with their life after chronic illness hits.

This blog has never been all about the sunshine and roses part of the chronic illness world. I do talk about every part of my life. The good, the bad, and the very ugly parts. I don’t hide. I don’t want people who are ill to think they have to hide. I’m beginning to think I may be wrong about that. I hope not.

The past year….plus….has been extremely difficult for me. I have had a lot of physical and mental challenges on both the home front and with my health issues. Of course, these challenges have come across in my blog. Every time I’ve written about a challenge, anything from my husband losing his job, to my increased vertigo attacks, I have tried to write each entry not just with pure emotion but with simple facts. This is what is happening, this is how we are dealing with it…ect. And I always try to end on a positive note. After all, I really do not feel negative about everything that has happened. Things happen to people, why should I be so different? This is my life, illnesses and all. Life is a gift, I’ll take mine the way it was given and I’ll make the most of it…..I’m learning how as I go.

Someone recently told me that my blog is a place I go to vent. I agree, I do vent on here, sometimes. I never thought that was all that I did. I just went through ALL of my post from January 2013 until now, and I have to admit, if you just look at the surface, most of them do seem like they are simply me venting about what is going on. Ironically, the past few months many of my posts have not been that kind of post. I’ve had plenty to vent about, and have posted about some things that I feel were very important…things that should be “vented” about. However, I’ve also written some pretty light-hearted posts.

I was also told recently that I can be a bit negative. Well, not in those exact words, it was more like….people don’t want to hear negative things all the time… I agree. I didn’t think I was a negative person. At least not all the time. Recently, I have had some things to post about that needed to be talked about in a negative manner, for example, when a doctor treats you improperly. Over all, I believe I have a more positive outlook about my life than negative. It saddens me if that does not come across.

Today, I wrote someone in my family an email. I hadn’t written in a while and apologized upfront, explaining that I had been having a rough month physically, but wasn’t going to talk about that and it was no excuse for not writing….then proceeded to write the email informing her of some positive things that were going on. I soon got a reply telling me how UPBEAT I sounded, and how she hoped I felt as good as I sounded…..ect. I was confused. I did mention in the first sentence that my health had been bad this past month, but all she heard was the UPBEAT tone. hmmmm. Do I normally sound like a sourpuss?

All of this, combined with a lot of soul-searching lately has made me wonder, am I doing any good here?

Yes, I started this blog just to help me….it was a private blog in the beginning, just a journal.

However, as I learned to accept living with my illnesses I felt my blog blossom into something much more. I felt it was touching others. I wanted to help other people know they aren’t alone, and you can have a great life. (Even if you have a lot of bad days.)

Let’s face it, it is easier to write when I’m having a hard time. When I’m feeling great, I’m too busy trying to live every day the best I can! On the bad days, I know my friends are here.

So I have a poll for you

Living in This Moment

On May 6, 2014 By WendyIn Chronic Illness, Meniere's Disease5 Comments

A train of thought post. One thought moving to the next…..

A chronic illnesses can shake your foundation, it can make you question everything…..

“Can I really live this life that has been handed to me?”
You question…..”Why, is this happening to me?”
You think….”I just want my life back….”
You create a story….”My life would be better if only….”

In the very harshest moments, the fear takes over.

What if this doesn’t get “better”? What if it doesn’t end? What if I’m always like this?

This has been going around my head for the past two weeks. The symptoms are not getting better. Are the side-effects from the medication making it even worse? Dealing with vertigo, and dealing with the side-effects from steroids are, mind b-o-g-g-l-i-n-g. My brain will not keep still, no matter how hard I try. BREATHE I keep telling myself. JUST BREATHE I’m jumpy, nervous, anxious, scared….and I’m so woozy, dizzy, sea-sick…..

BREATHE

OUT

BREATHE

ahhhh, just a little.

NO, NO…don’t move your head. You would think after two weeks I would know I can’t move my head. I guess that’s an over-statement. I can move my head, just very, very slowly. Still, I feel as if the room moves with me. The unsteadiness is disconcerting, and is causing the bile to rise in my throat. BREATHE. It is just a MOMENT.

Stay in this moment.

Do not think about the next moment.

Stay here…right here. In the NOW.

I was thinking. I’ve been thinking a lot recently, probably way too much. I have been through a lot of medical tests, procedures…..ect….in my life. I’ve broken bones, had major surgeries, I have dealt with pain, a lot of pain. When I have been undergoing a test or treatment and it is very painful my medical team will often ask if it is “tolerable”? I have only said “no”, once. And I soon went back to that test and finished it. The thought that it will end, makes it tolerable to me. It will only last a moment. I’m in that moment. I know this will end. I can handle anything for a moment.

Why is it different now? The pain is not “worse”. The vertigo is not “worse”.

It is the MOMENT.

I cannot stay in the moment. My mind has jumped to the story….”What if this doesn’t end?” The moment is not just a moment. But wait! Every moment ENDS. Each moment is different!

Look….the moment you just read that is different from this one. It just is. You couldn’t predict it. It is different from this moment and will be different from the next.

If there is one thing I’ve learned over the past few years, nothing is permanent.

Everything changes.

Each moment is a moment.

It is not the past, or the next. it is not better or worse…it just IS.

it is the moment. and I can handle any moment. After all, it’s just a moment.

It is the moment I have.

I will live in this MOMENT.

Just thinking today…..

On April 21, 2014 By WendyIn Life2 Comments

Daffodils, March 2014 by Stuart Holcombe — The Changing of the Seasons.
Daffodils, March 2014
by Stuart Holcombe

Change is the law of life.

And those who look only to the past or present are certain to miss the future.

– John F. Kennedy

A tiny little update

On April 14, 2014 By WendyIn Bipolar, Chronic Illness, Meniere's Disease9 Comments

After my last post I feel horrible I haven’t been back here sooner.

I’m not having a good time with the vertigo recently. My dear friend, Mr. Meniere’s, has decided to settle in for a visit. A long horrible visit…so this really will be very short.

Saw my psych doctor last Wednesday. She is supposed to be talking to my Neurologist (headache pain specialist) about a drug we discussed putting me on. (a good idea huh?) But it’s taking a long time. I did see her late on Wednesday so things probably didn’t get started until Thursday…but my goodness. Well, I won’t get in to all of that. I’m upset about that visit….but I’ll vent later.

I am having a better time of it. Not cycling so much now, I’ve been pretty level for a couple of days now. I’m reading more of the Buddha’s teachings, and it helps. (I’m not pushing Buddhism here….I just get very comforted when I read his teachings and try to follow the practices.)

I really need to control my anxiety. I know the vertigo is more out of control because of the stress. It is my greatest trigger for Meniere’s.

I need to have emergency plans in place…just in case. This helps relieve my anxiety about a situation I have no control over. It gives me a little control. For example, I have an emergency kit for when I have vertigo attacks. I feel my severe vertigo attacks have fallen drastically since I created this kit. I have one for home and one for travel. It eases my mind.

When I started feeling suicidal, I knew it was my illness, but it didn’t really matter. So when I cycled enough out of it to be able to really communicate with my husband, we made up an emergency plan. I know where to call, or go if I feel I am going to hurt myself. My husband put all of my medication away and gives it to me as prescribed so I will not….tempted when I fall in the darkness of my soul. We have a plan. It has helped me so much. I now feel that I am understood. My husband knows how I’m feeling, as much as he can. He’s taking me seriously, and helped me to have in place a way to make it easier when (or if?) the dark lady returns.

Today, we talked about an emergency plan if my husband remains out of work. We can’t wait until there is no money left, it will cost us money to leave here. We need to know at what point do we need to decide to leave. Where we are going, and how things will happen. There are parts in there we are pretty sure about, but we need to solidify this plan. I’m so anxious about our future I feel paralyzed. I know that it is adding to my feeling so very ill.

So….I’m here.

I’m not on the computer a lot right now because of the vertigo.

I’m working on getting the psych meds straight.

We are working on an emergency plan if hubby doesn’t find a job before we completely run out of money. (luckily we were able to get on a mortgage assistance plan, or we would be destitute before now. But right now we don’t have to pay our mortgage because of this assistance.) This will help me feel less anxious about our future.

I have much more to say….things I’ve been discovering about myself…and just thoughts in general.

Thank you all for the loving support you have shown me. I have felt these emotions all around me, and it has helped so much. We may not all know each other in person, but I promise, the loving thoughts sent from all of you have reached me. And I am eternally grateful.

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.

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!

5 Random Things About Me

On March 4, 2014 By WendyIn Chronic Illness8 Comments

The prompts on BlogHer this month are all about ME. Well, not just me, anyone who actually uses the prompt. I thought I would use a few of their prompts to get me posting more regularly, trying to get in the hang of it before WEGO‘s Health Advocates Writers Month Challenge starts in April. (WEGO’s HAWMC sign up has not started yet.)

Five Random Things About ME!

My hair wasn’t cut, except for tiny trims, for the first 10 years of my life. I could sit on the floor and completely cover myself with my hair. I pretended to be Cousin “It” from the Addams Family.
Cousin It. image from http://www.fanpop.com
When asked what I wanted to be when I grew up I answered, “a Vampire”. I was very young, but loved Dark Shadows, and believed if I was a Vampire no one could hurt me. My mother’s friends were not amused.
George. When I was growing up I had a variety of pets that I found…..a turtle, a few snakes….ect. I always named them George. (now my computer’s name is George!)
I will hug him and pet him and squeeze him. And name him George.
My husband says that he has only seen me cry from joy twice. The day we got married, and the day I met Mickey Mouse. About the Mickey encounter I said, “I know it’s just some teenager in a suit, but I can’t stop crying!” On both occasions the joy just exploded from me in the form of tears.
At one point in college I had 7 part time jobs. (yes, I still kept my GPA above a 3.5)

This was kind of hard to do. My blog is all about me and my journey with chronic illnesses, I talk about me often, so coming up with 5 things I felt my readers wouldn’t know was tough.

Things on my mind….

On August 27, 2013 By WendyIn Chronic Illness, Cochlear Implant4 Comments

a big sheep on a man's head the sheep has a coffee cup and the man is looking up. a cartoon — Got Ewe On My Mind by LoopyDave on DeviantArt.com

Please note, this post is just random thoughts I’m having and want to get out of my head for a bit.

I’ve had a lot of time to think recently. I haven’t been able to type a lot because I hurt my shoulder. I fell, again. This time I was going to the bathroom in the middle of the night. I was not balancing very well, but that’s normal. I started to fall right at the toilet and fell into the wall. My shoulder took most of the weight. So I’ve tried to just do less with it, but it got worse. So I had to do much, much less. Now it seems to be getting better.

So if I haven’t been commenting on your blogs, it doesn’t mean I haven’t been reading, I just haven’t been typing much. I read them in my email on my phone, it’s hard to comment on my phone, and that would hurt my arm just as much, I think. So in the wee hours of the morning when I’m up coughing, I’m probably reading your blog, and thinking of You.

Stuart has started school. I’m proud of him. I’m also scared and stressed out. I don’t want to live poor again. Not that we are rich by any means, but I used to live paycheck to paycheck and often ran out of money. I remember many times living on peanut butter and jelly sandwiches for weeks to get by, I’d also accept dates from guys I knew I didn’t want to date just so I would get a good meal. Stuart has never wanted for anything really. So I’m much more stressed about it than he is. In my heart I know things will work out. But, in my gut, I’m nervous.

I will be going to Duke’s Asthma, Allergy, and Airway clinic on Friday. Please everyone think about me and send good thoughts that they will be able to stop this dang cough. I’ve been coughing every day since mid October…yes that’s last year!

On September 3rd, my hubby and I will be celebrating our 9th anniversary. We can’t really do anything but we’ll be celebrating that we’ve been through so much in our 9 years of marriage and are still madly in love.

The second week of September I go in for Pre-Op for my second cochlear implant surgery.

The surgery is on September 25th. I don’t know why, but I’m more nervous this time than I was the last time. Before I was more excited, now, I’m a bit scared. I shouldn’t have, but I expected a lot from the first CI, so this time I’m not expecting anything. Which is silly, that’s what I have now. No hearing in that ear. Things have to be better when I can hear out of two ears.

Well, I have much more on my mind but I don’t have the energy to write more right now. And you are probably tired of reading my tirade.

What’s on your mind today?

20 years and I still miss you every day….I love you mom.

On June 29, 2013 By WendyIn Life14 Comments

The anniversary of my mother’s death was June 23rd. I simply cannot believe it’s been 20 years since my mother passed away. Cancer is not prejudice it will attack anyone at any time.

Having such a hard time with Asthma lately has brought back some dark memories of watching my mother fight to breathe…… Lung Cancer is an ugly way to die. If anyone who is reading this is a smoker, I beg you to stop. If you don’t want to do it for yourself, please think of those who love you.

OK…enough of this…it’s not how I want to remember my mother.

My mother was a marvel. She hated to cook, yet she could make a feast out of next to nothing. Growing up I didn’t realize we had less than others, I actually thought we were well off, but as I look back I realize just how much that was because of my mom. She was the ultimate in reusing things, and she’d never heard of “Reduce, Reuse, Recycle”. She even had a compost pile, before anyone knew what to call it. She was raised that way, and now I live that way.

She was one of the only people in my life….before my husband….who accepted me just the way I am. She believed in me. I believe she is the only one who believed I would graduate from college. I did it! With honors! She was not surprised….I think she was the only one.

I went to a college that was just a little over an hour from home. One morning before my classes I talked to my mother and told her how much I missed her banana pudding, when I got out of class and came back to the dorms my mother was waiting, with a huge dish of banana pudding. She was always surprising me.

She grew up on a tobacco farm (so. of course. she became a smoker), she didn’t experience much while growing up, even when she was a young adult she really didn’t know much about the world. I don’t mean she was naive, she simply had the heart of a little girl, but the inner strength of Super Woman. We would go places and she would be so awed by the sites. I shared my love for art with her, and she soaked it in.

Amazingly, my mother never graduated high-school, dropping out in the 6th grade to care for her ailing grand mother, who was raising her. She also didn’t know ho

Head Shot of my mom. Christeen Hutchins (Moore-Calloway) — Head Shot of my mom.
Christeen Hutchins (Moore-Calloway)

w to drive until after I was born, and didn’t have a pair of blue jeans until she was in her 50’s.

I remember going to the library with her. She was so intimidated at first, but soon she was deep in the words, looking up things she had been interested in, but never had the nerve to research them. I remember when she got a Camaro, this woman who didn’t drive until her late 30’s loved speed….but she was very careful. Until she backed into a mail truck, but that’s a different story.

She may have gotten her first pair of blue jeans when she was in her 50’s, but after that you couldn’t get her out of them. She loved jeans. Almost as much as she loved pizza!

I don’t think she had pizza until I was a girl. She was thrilled when the cheese would leave a string from the slice to her mouth. I once heard her say she could eat pizza hot or cold, for breakfast, lunch, or dinner. And she liked everything on it!

I mentioned how strong she was, one day on her way home she was attacked and she fought of the attacker by grabbing a rock and bashing him in the head. For days she looked in the paper to see if she had killed him. No notice, but the attacks in the area stopped. She always wondered. Her first marriage ended in tragedy. Her husband had a meeting one evening, he asked if she and their one year old daughter wanted to come, but my mom said she needed to wash diapers. Hours later she found out he hit ice on a bridge and ran off into the water. He drowned. My mother was suddenly a single mother, with no income. She moved in with her mother, went to cosmetology school, and started a life for her and her daughter. Then she met my dad…and the story goes on.

We had such a very special relationship. I do miss her ever moment. I’m so honored to have been raised by such an amazing woman!