Creativity As A Way To Cope

On February 23, 2016February 23, 2016 By WendyIn Bipolar, Chronic Illness, Creativity7 Comments

As you look around the chronic illness community you will often find that we use creativity as a coping mechanism. There is science to back up our intuition that creativity is a good thing for us.

“When we are involved in (creativity), we feel that we are living more fully than during the rest of life,” Csikszentmihalyi said during a TED talk in 2004. “You know that what you need to do is possible to do, even though difficult, and sense of time disappears. You forget yourself. You feel part of something larger.”

This quote comes from a much larger article on this subject I found on CNN’s site. I thought it extremely interesting, perhaps you will too. This is Your Brain On Crafting.

Today I thought I’d share with you some things I’ve been doing recently to spark my creativity. I received a tablet for Christmas, it comes with a stylus so I can draw right on the screen. I love it. It’s hard when I have very little space, and I often have to stop working very quickly to bring out a lot of art supplies, so learning how to create art on the computer has been wonderful. I’ve been using an app called Sketchbook. They post challenges that you can take on if you like. This has been perfect for me. I have had a very hard time creating art in the past year, deciding on what to do has been too hard. The challenges give me a focus. It’s like having an assignment back in school. I get so involved in these projects that times goes by without me noticing.

If you would like to see the photos larger just click on one and you can see a slide show that will show them in a larger size.

The assignments were:

Upper left – Biggest Fear – Title “The Monster Within”
Top Right – Female Human Animal Hybrid – “Butterfly Woman”
Middle Right – Modern Mythical Creature – Loch Ness Monster “Nessie”
Bottom Left – Person I’d most like to meet – “Siddhārtha Gautama” (Buddha)
Middle Bottom – Abstract Tree
Bottom Right – Dream Home

Do you have a creative outlet? You don’t stress thinking you are good at it or not, just do something. No one else ever has to see it. Coloring books are really popular right now, this is a great way to get your creative juices flowing. Is there something you have always wanted to try? Photography? Learning how to crochet? Knit? Cook? Stamping? Paper Crafts? Jewelry? Poetry? Writing? So much to try, so little time!!

After decades of research by Professor Mihaly Csikszentmihalyi he found getting involved in something creative produces the same effects as meditation. Something he calls flow.

If you’ve been reading my blog for long, you know I’m very into mindfulness and the benefits of it and meditation. So learning this made me very happy, especially since I just haven’t been able to meditate recently.

(shh, I’ll share a little secret with you, I’ve been really depressed for a long time now. The antidepressants I’m on simply aren’t working. Things need to change. I’ve had a psychiatric nurse practitioner here who writes my prescriptions, but she isn’t very good at working with me since things have changed. I’m bipolar, I’m having a severe mood change, I need help. So I’m searching for someone I can really work with, and I think it’s time for me to go back into therapy. I’m working on it, but it is taking a bit of time. While I’m finding the right doctor and therapist that click with me, I’ll be trying to do as much work as I can to help myself. Including, being a lot more creative. I plan to post much more about my days, to see just how I’m doing, the good days, the bad days, and all the days in between. I hope you will join me on this journey. I might even post more of my challenges.)

Keep Calm and Create

Chonic Pain/Ilness Photography 2015 Project Week 3

On May 25, 2015 By WendyIn Chronic Illness, Photography6 Comments

This is the final week of the Chronic Pain and Illness Photography Project I have been participating in for the past 3 weeks. Facilitator Stephanie Blumensaat did a marvelous job putting this project together and keeping the group running smoothly. What a wonderful group of creative people who were willing to share so much of their art, their lives and their souls. Simply amazing. Stephanie has a blog, Chronic Pain Life, that you just might want to check out. She will be putting together future projects that some of you might want to participate in, I know I will.

I hope you enjoy these photos and insights into me….

Day 15 – Gratitude. – posting a day late

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I have much to be grateful for every day, yesterday was no exception, but it was a very rough day, things happening all around me that I could not help with or do anything about. (my dog had an emergency trip to the vet and I couldn’t move my head without vomiting to help…it was a very hard day.) Yesterday was filled with rapid vertigo. Yesterday I had a very long, rough day with vertigo. I am very grateful for the bucket I could throw up in if needed….and all the medication I had that made me not have to throw up so much. (I’m most thankful for my darling husband for taking care of our furry baby…she’s fine…and taking care of me.)
Truthfully, I’m very grateful the day is over.

Day 16 – Dreams

One dream I always had was to go to Disney Land, not Disney World, I wanted to go to the original.

Right before I got very sick, I was able to go. This is the land of dreams….a place where dreams come true…..the photo is the refection of the castle. I think this photo is very symbolic of my dreams today, they are very vivid and beautiful, a little wavy, and sometimes a bit upside down….that doesn’t mean I’ve stopped dreaming.
I still have many dreams, some are short term, some are long term, some are very attainable, some probably aren’t. And that’s OK. I think healthy people have the same kind of dreams….not all come true.

Day 17 – Identity

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The image I chose for this prompt is a mask I made….the outside shows how most of the world sees me….the invisible illness, my cheery exterior…is that part of my identity….yes, I think so. The inside of the mask shows how I feel about things and how I feel about me. I think this is a good representation of my identity.

This prompt was very hard for me. If I were able to really get up and out and create a new photograph for this prompt I would have done something different.

How do I Identify myself now? I’m still Wendy.

Day 18 – Know This

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Know This….You are not your illness/pain.

Your illness and pain are a part of you but it is not YOU.
Do not lose yourself.

Day 19 – Spirit

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Showing my spiritual side. I hope you enjoy this photo as much as I do.
I took the selfie yesterday and manipulated it in Photoshop to show my spiritual side.

I study Buddhism,
I follow a mindfulness way of living.
This has made a huge difference in my life, and how I deal with chronic illnesses.
Namaste

Day 20 – Goals

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Take more risk…..overcome fear….first step!….walk out the front door…..

My goals….get out more.
We moved to a new place in August of last year. During the move my hip started to hurt. I haven’t been able to hardly walk since the move. I had hip replacement surgery on the 14th. I’m starting to walk again, that is going very well. However, I’ve had vertigo attacks every day for over 30 days. Fear rules my life. I started to get in the shower today, and was then going to go to the store with my husband. A first outing since my surgery, other than to the doctor….

right before I got in the shower I was on the computer and the world started to tilt……suddenly it started to spin, violently…for 5 hours I was spinning with violent vertigo, so very, very sick!!!

Then I slept for 2 hours and I still feel like I have no balance and my head is mush.

Deep Breath!!!

This is a HUGE GOAL!
Get out that door!
Expand my life!
I know I can do it!

if not…my Goal is to be perfectly happy, in the life I have, just the way it is.

Day 21 – Invisible

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Invisible Illness and me

“You look so good!”
Just beneath the surface
no one can see
the cracks….
the cracks…..

Day 22 – Music (bonus prompt)

As most of you may know, I’m deaf. My chronic illness took my hearing. I haven’t been deaf long, and music is still in my head and I still sing and love music…I just can’t listen to it. (I have Cochlear Implants and can hear some music but not like I used to. Hopefully, I will be able to hear it better in the future, but for now, not so much.)

When I relax I often hum, when I’m up I often sing, my husband and I often make up silly songs and laugh…..the silly songs are wonderful, they make me feel normal, and keep up my spirits. Music can be very therapeutic.

Today I wanted to share something different with you.
A few years ago, right before I lost all of my hearing I sat down with a friend of mine who is a sound engineer and he did a pretty good recording of what my tinnitus sounds like. These are the sounds I hear all the time. I don’t hear the worst of it all the time, but I do hear some of these all the time.

One day recently I suddenly didn’t hear anything and it scared me. I felt completely alone and was terrified. It didn’t last long. These sounds can drive me crazy at times, but they can also be very soothing.

This is my music….my Sounds of Silence.

Day 23 – Art (bonus prompt)

I use my art to help me with my chronic illness in many ways.
Here you will see where I have three expressions of me.
Silly loving Me.
Chronic Pain Me.
Natural, Strong Me.

I try to create something every day….drawing, writing, photography……anything creative…..
My art helps me heal, even if I’m just doodling, creating heals my soul.

(sometimes when I can’t voice my pain, I can show it in my art)

The Chronic Pain and Illness Photography Project is over now. I’ll be returning to my regular scheduled programming. 🙂

I’m sure my regular readers are curious about my hip replacement surgery recovery. I’ll give you a thorough update in the next post….here’s a little spoiler….my hip is doing GREAT!

See you soon. I’m off to Duke for visits to my doctors tomorrow, and the next day, and the next day….. Yay!!

Chonic Pain/Ilness Photography 2015 Project Week 2

On May 13, 2015May 13, 2015 By WendyIn Chronic Illness, Chronic Pain, Photography4 Comments

The second week of the Chronic Pain/Illness Photography Project I have been participating in on Facebook has been amazing. The people who are contributions and contributors are amazing. This has become so much more than just sharing photographs, we are sharing our deepest fears, pains, joys, loves….our lives. The support that has been given and felt is nothing like I expected from a Photography Project. The project has been consuming. When I’m not working on the theme for the day, I’m looking at contributions, reading stories, commenting, sharing….when I’m not actively working with the project I’m often thinking about the people, or a certain entry that has touched me. This project will touch me forever. I hope you enjoy my interpretation of this weeks prompts…..

Day 8 – Affirmations

I try to live a mindful life. These quotes help me remember to live in the now, and remember that my body, just as it is right now, is just fine (I’m only human).

I also try to remember to be gentle with myself, I’m the only me I have. (I have a habit of beating myself up a bit, expecting more out of myself….my doctors, and my husband have often told me to give myself a break..I’m learning to.)

The photo on the left I took of my toes in the ocean, with a quote by James Baraz –
Mindfulness is simply
being aware of what is happening right now without wishing it were different.
Enjoying the pleasant without holding on when it changes. (which it will)
Being with the unpleasant without fearing it will always be this way. (which it won’t) – James Baraz

On the right, a photo my husband took, with a quote by Pema Chodron –
Realize that this very body,
with its aches and its pleasures….
is exactly what we need to be fully human,
fully awake, fully alive.

Day 9 – Support.

The greatest Support I have is my husband. This photo is from our wedding. When we got married, 10 1/2 years ago, I was sick, but not nearly as sick as I have been in the last 5+ years.
He had no idea what he was getting into, but he has always been my greatest support. He is always by my side, always holding me, understanding when I am a complete bitch to him, helping me with the most humiliating task, watching me go through numerous painful medical tests and treatments….he is the only one bringing home any finances, and he also cooks, cleans, takes care of our pets and me.
I feel he has sacrificed so much to give me the best life possible.

He says I am his support, that I am what gets him through the day, I am his inspiration….He tells me he was a selfish person before me, that he strives to be a better person because of me, he tells me that nothing he does is a sacrifice because he’d rather be with me, than do anything without me. How can this be? How can he give me so much, and still think that I am an equal in this relationship?

Our relationship gets better and better. (we did go to therapy to help deal with me losing my independence and understanding how to deal with a chronic illness. The therapist I went to, and soon asked my husband to join the sessions, works a lot with people with chronic illnesses.)

Our relationship is really my biggest support. Together, we can do this.

Day 10 – Comfort

Comfort comes in all shapes and sizes for me.
When I first thought what I reach for first when I need comforting, I thought of my Monkey. I got him right before I first started getting really sick. He has seen me through a lot. He not only cuddles with me, but he makes a great neck pillow, a lumbar support…ect. I take him just about every where. Yep, this grown woman takes her stuffed animal to the hospital with her!My painting of Buddha meditating represents my mindfulness practice, and meditation. Mindfulness practice has been a great comfort to me. I think it has helped me more than most medical treatments. I have also begun to study the Buddha’s teachings in the past few years and this has also been a great comfort to me.

The photo I took of the wild flower with the little bee on it is comforting to me because it reminds me to appreciate the little beautiful things I see, and not get so caught up in all the pain and suffering. It reminds me that life is constantly changing, just as the seasons change, my life is changing….I take comfort in that.

Day 11 – Who I Was:

This was the hardest prompt for me to date. It brought up so many emotions. When I first read “Who I Was”, I thought, I’m still the ME I’ve always been, yes, I’m sick, but I’m ME….then I started looking at pictures…thank goodness I don’t have a lot of photos of the “before” pictures on my computer. This brought up a lot of emotions. Emotions I thought I’d dealt with a long time ago. But grief isn’t linear, and right now, I’m grieving a bit for some of the old Wendy…..this just touches on some of the old me…A little of Who I Was….
top left: a selfie with (my then boy friend) now hubby – a little sexy thing. I miss feeling sexy, or being able to have sex without pain, or being able to have a normal sex life….no, to be honest, I really miss having a wild sex life! I finally met the love of my life, and not long afterward my sex life was ruined. I’m not that me any more.top right: I’m in the front on the left. This is a birthday party for one of our old friends. This was a normal occurrence before I was sick. I was social, I entertained. I went to museums and art shows and parties…… I had a lot of friends. I’m not that person any more.

bottom left: Me on the left with a friend at the NC State Fair. I was spontaneous, I could run, and jump, and play….I loved playing with kids. I was FUN. (sometimes I still am, but it’s hard..it sure isn’t spontaneous, and I pay for it afterward) I used to do these things without fear. I can’t do that any more. The now Wendy is full of fear.

bottom right: Me cooking…well baking…well, enjoying the products from baking…haha. I love to cook. I love everything about it. I have fructose malabsorption, I’m allergic to wheat, I’m hypoglycemic…..ect… These things, well yeah, I’m sick with it, but it didn’t matter much except when eating out, because I loved to cook! It was just a challenge. I loved to play with ingredients and learn to make new flavors with the foods I can eat. I had a gluten free food blog with close to 2,000 followers. Suddenly my balance issues got too bad. I was having too many accidents in the kitchen. I can’t cook now. I really, really miss this….this is one thing I hope I can get back. I can’t drive either, but I’d rather be able to cook than to drive. And I live in an area where I can’t really get anywhere without being able to drive.

Day 12 – Motivation

LIFE – My little flower represents life….even when it isn’t supposed to be there.

Much of what I’ve already posted are motivators to me, however, I think the thing that motivates me the most is life. I want to live my life. It may not be the life I expected, but it’s still my life. I’ve learned to change those expectations…and simply live day to day.

I read something recently that stuck with me.
Sometimes the best way to motivate yourself is to stop trying to motivate yourself. (That really hit the nail on the head with me. Sometimes I have a hard time getting motivated, especially when I’m depressed. Sometimes I just have to act.)
You do not need motivation to act.
You do have to make a conscious decision to act.
The action could be big or small.
It may not turn out the way you want.
How you feel about that is irrelevant.
(OK…that part is really hard. for me this part means, being ok with how things are, no matter what happens.)
Actions move you forward.
Waiting for motivation keeps you stuck.
What you do with this information, you do in this moment.
The decision is always up to you.
(this came from a website called mindfulness over matter)

I also have to remember to always be gentle with myself and forgive myself if things don’t turn out as I planned. If I can’t get motivated or even act on something sometimes, it’s ok, forgive myself and move on. Give myself a break.

Day 13 – Challenges

Whew – To sit down and think of all the challenges I face each day, I couldn’t sum it all up here. It was difficult to pick what to share with our group.

In the center of my collage you will find a lot of spoons on the floor. If you are acquainted with the spoon theory you will probably understand this immediately. If not, I recommend you read it, you can find it here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ I haven’t been the biggest fan of the spoon theory myself, because there are many days I have no “spoons” and I still do things, sometimes you just have to push through it or you don’t make it to that doctor’s appointment you made 3 months ago (yes, I’ve still had to cancel those way too many times). But for me this represents all the challenges I face on a day to day basis that take every bit of my energy, or that I have to get up all my courage to do (like take a bath or shower) that normal people have no problem with.

From there we will go from top left to right around to the bottom left.

Selfie of my incision after one of my ear surgeries. This represents the challenge that I’ve had many surgeries on my ears and they are still ruling my life. Between the vertigo and the lack of hearing, causing me to shy away from social interaction and have fear almost every moment of the day that I will be attacked by my own head and lose control of my body.

The next photo represents one time I had vertigo when in public and was stuck in a parking lot of over 4 hours, I was 1 mile from my home. I finally got my husband to get me home, I ended up having a violent attack for over 9 hours. I thew up most of this time and lost control of all bodily function. It is a huge challenge to get over my fear of having vertigo in public and just go out, and it is a huge challenge swallow my humility and allow my husband to take care of me and clean me up when I have soiled myself.

The last on the top row, another selfie, represents my challenge of living with Bipolar I disorder. I have been mostly stable for about 20 years, but it is still a challenge. I have to be very dilligent about taking my medication and taking care of myself. I have to really pay attention to my body and my mind. If I notice any symptoms returning I need to get in touch with my doctor immediately. There is always a chance the medication my stop working. Having Bipolar I is classic Manic Depression, and it is very challenging.

The middle row left is a do not disturb sign from a trip my husband and I took before we were married. This represents the challenges I have having sexual relations with my husband. If anyone wants to talk about this, I will be more than happy to. I know this is something that is very hard to talk about, but it is very important to break down that barrier. You are not alone.

On the middle left top is a self portrait of me painting. This is a big challenge now. I can paint, but I get confused. There are many days I simply can’t paint due to pain, but I also have a hard time with subject manner and style. I feel more empty inside about my art. I would like to put my illness on canvas to get it out, but I just can’t. I’ve done a couple of commission pieces, but I have to have no deadline. It’s simply a really big challenge. My doodles make me happy, at least I’m doing something.

Just below, you will see my arm with many hospital bracelets on me. This is actually from my last visit to the hospital. This represents the challenge of having to go to the hospital so much. To so many doctors. To owe so may hospital and doctor bills that only my husband can pay. To me it even represents fighting for disability.

On the lower left you will find my Headache Pain Scale. This represents the challenge I have always found in telling doctors how I feel. I don’t feel that doctors really understand patients a lot of the time. I’m lucky I have many good doctors. I’m also lucky that I have the kind of insurance that if I don’t have a good doctor I can fire them. (and I have) But finding a doctor who really understands is a challenge. (also not being able to hear makes it hard for a doctor to make himself understood to me….we definitely can have communication troubles.

The last photo on the bottom left represents the unknown. They have come to the point that they have told me that they don’t know what is wrong. We know I have a vestibular illness, probably more than one, but they don’t know what. I have been told for many years I have Meniere’s disease. I have been through more tests and treatments than you can believe, now I’ve been told, they can’t do any more. I’m stuck with the unknown. There are other conditions they don’t know about, the Avascular Necrosis in my hip, they don’t know if I will get it in other joints….good chance. Some doctors have said that other diseases I have may all go together, other doctors say no? I think my body may hate me. The photo is an x-ray of my hip on the left, and a photo of my ear on the right that I have manipulated beyond recognition.

These are some of the challenges I face. Sorry I couldn’t keep it shorter

Day 14 – My Body

It’s cute….but very fragile.
(note, I could never get in this position, not now, but I used to love yoga, I could have…)

*this is a straw wrapper version of me, created one day when I was playing with the wrapper from my hubby’s drink.

As you can see the Chronic Pain/Illness Photography Project has become much more than sharing photographs. Everyone in the project is sharing a part of their soul. I feel so honored to be a part of this project. One week to go…..

I Didn’t Expect

On April 27, 2015 By WendyIn Avascular Necrosis, Chronic Illness, Hip Replacement, Pain, stress5 Comments

I didn’t expect the depression I’m feeling….

I saw the signs, I have so much going on, there are so many outside reasons….but I’m struggling….this is why I’ve been away so long, why my blog has been suffering, why I simply haven’t.

Today, I’m going to write, I have too much to write about, I am overwhelmed by how much I have to write about, but I need to…..

I didn’t expect to have vertigo almost all day the day before surgery.

I didn’t expect to have vertigo in the waiting room right before surgery.

I didn’t expect the intense pain after my surgery. During surgery the back injury that just got better was aggravated. I was not just dealing with surgery pain, the pain I expected, I was dealing with the back pain and severe sciatic pain. To make it worse, I couldn’t move to make the back and sciatic any better. I was stuck, in so much pain. We could not get this pain under control. I have issues with pain medication. Everything makes me hypersensitive, I feel like things are on me, it makes me itchy. So I was only prescribed Tylenol and Tramadol. This didn’t do it. They tried to put me on my side to help, this caused me so much pain I swear I wasn’t even in the room it was just pain. Luckily, it didn’t last long. I decided I’d rather itch. They tried Hydrocodone. nothing. I don’t know what all was tried. at 2am they tried Toradol, this is a NSAID given by IV or injection. I’ve had it for my migraines before. This finally worked. Probably in conjunction with everything else. I finally fell asleep. Only to be awoken at 4am to have my blood drawn. Then at 6am for something and at 7am because shifts changed….it was an exhausting. But I have to say, the night nurse who was trying to help me was absolutely wonderful, I couldn’t have asked for better care.

I didn’t expect to have low blood pressure, a magnesium deficiency, and have to stay another night.

I did get out of bed the first day and walk a little, I was told I did great. (the intense pain hadn’t started yet) I had my morning Physical Therapy on the second day and did well, even though I was a little dizzy. I didn’t expect to have a vertigo that afternoon. During my vertigo attack I had 3 different people come to work with me, including my Physical Therapist. No afternoon PT, no going home. They also had to make sure my pain was under control before I went home. It was better that night…but I had to sleep in a recliner, glad we bought one for me the right before I had my surgery. (ugly thing) I didn’t expect to HAVE to sleep in a chair for many nights after I got home. I didn’t expect to cry from the pain so much, after my surgery.

I didn’t expect my sister to come and help. I am very grateful. I didn’t expect it to be so hard for Stuart to stand back and allow someone to help. He said he’s just used to doing it, it’s hard to ask someone else to do things. Yep, I know that feeling. It’s very hard to ask others to do things. Especially, for me to ask for the little things. It’s hard to ask for things like something to drink, or a snack, to reach something for me, to get me a blanket if I’m cold….ect. Yep, I’m having a hard time asking for things too. I’ll ask for someone to go to the store, or do some laundry, things like that…..but it’s the little things that get me. It makes me feel so helpless. Eh…I guess I am. (I feel pretty weird having anyone other than Stuart do private things for me too…that is one of the hardest things I’ve had to deal with…one of the hardest)

I didn’t expect to have vertigo every day since my surgery.

I didn’t expect for Stuart to have to take off a second week from work. (I think he got in a little bit of work the second week…but not much.)

I didn’t expect…..

I didn’t expect to have a death in the family two days after my surgery. It was my extended family by marriage (my cousin’s daughter’s husband), I didn’t know him personally, but the circumstances of his death were hard….so very sad. He was young, in his late thirties. He was EMT on his way to work and pulled off and parked at a gas station, they found him slumped across the steering wheel dead. The autopsy has been inconclusive. There are still test out, but they don’t expect to find anything. They will probably have no idea why he died. They also found out a lot about him that his wife had no idea about, it is very, very sad. It also makes you think…..and think….

I didn’t expect for one of my father’s friends to die the next day. I knew him growing up. He worked with my father, they used to Barbeque (or barbecue in some parts) together. When I say Barbeque, I mean Southern Barbeque; a huge hog in a pit, slow roasted all night long….oh my it is good. We used to have picnics and things over at his farm. He let me touch my first cow, it was much softer than I thought it would be. He was 12 years younger than my father. As you get older you see more and more friends die, I wonder if my father is having a hard time with this? I’ve noticed he goes to a lot of funerals. That’s a subject that would be hard for me to broach with him.

I didn’t expect my friend Laurie from Hibernationnow’s Blog to die on April, 21st. She caught the flu in February and that just snowballed into more and more, she just got sicker and finally her body couldn’t take it any more and she died. I’m in complete in shock about her death. I keep looking for updates to her blog in my email. I look for her to chat with me on Facebook. I heard from her in some way nearly every day. It may not have been personally, but I always knew she was there. Now she’s not. Just like that….suddenly her voice is gone. Her thoughts are not in my life any more. Laurie fought fibromyalgia, she was quirky in ways and loved the color yellow, she loved the ocean, writing, and most of all her family. We were both foodies, and we both lost a dogs who left huge holes in our hearts, and later we both adopted rescue dogs who took over a new place in our hearts. The one thing we disagreed the most about was our feelings about the chef Alton Brown. She hated him, I love him…..it was quite a debate on one of her post! I will miss you Laurie. All the support and love you gave me, and our friendly banter. May you be pain-free in a nice warm place near the ocean taking a walk with your father.

I didn’t expect my dearest friend’s mother to die this week. She has been battling Amyotrophy Lateral Sclerosis (ALS, otherwise known as Lou Gehrig’s disease) for the past 9 months. I’m actually relieved she didn’t have to live in her body with her mind fully aware without being able to communicate with anyone for very long. I loved Kathy very much. I wanted so much to be there to help care for her. I wanted to be there for my friend and help her through this difficult time. Now I can’t be there for her again. The death of her mother is going to devastate my friend. She was closer to her than anyone. They talked daily. They were best friends. Her mother’s illness took a toll on the family. Yes, she will have a lot of people around her, but I know she needs her best friend. It is extremely hard not to be able to go. I am so tired of feeling useless. But this should not be about me, it should be about Kathy. She was such a strong woman. A single mother, raising 3 children mostly by herself. She was so generous and kind. She worked so hard and hard and hard….and she gave and gave and gave. This probably gave her more joy, but from my view I wish she had been able to take more time for her. She was just about to retire when she got sick. I know Kathy did have a good life, and celebrated life, but I also know she was looking forward to slowing down and just enjoying her grand children. Please don’t put off living until tomorrow. Kathy was one of the best people I knew. That sums it up pretty well.

I didn’t expect writing this post would make me feel better.

Surgery Date, and Vertigo

On March 17, 2015 By WendyIn Avascular Necrosis, Chronic Illness, Hip Replacement, Meniere's Disease20 Comments

I will be having my hip replacement on April 14th.

I admit I’ve had my surgery date since right after my last post, but I didn’t want to make a post that just said my surgery date, so I’ve been procrastinating. I’ve also been busy getting ready. There’s really a lot to do. Had to get blood test to make sure I’m not anemic. If I had been I would have needed to start a drug to build that up a month before surgery. Since I’m not, I still need to start iron supplements 2 weeks before to reduce the chances of needing a transfusion. I’ll soon be having the post-surgical mobility people come out to help set up our home so I’ll be all set up after surgery. For now there are certain things we know we need to do and are trying to get those things done. (like lift a chair for me, and the bed…) There’s just all kinds of things I have to do……

Aqua Therapy www.physiotec.ca — Aqua Therapy
www.physiotec.ca

Aqua Physical Therapy has been going well. It is magical. I get in the water and suddenly I can walk with no pain. I go from not being able to put weight on my leg without excruciating pain, to no pain! Amazing. Some of the exercises to hurt, can’t avoid that, it’s so different than normally being in physical therapy when you feel better and better as you go along. My pain is getting worse. We understand why, of course, but it’s difficult. However, I am getting stronger. I can do more repetitions on some exercises, can walk further, I just can’t certain exercises any more, and we have to change other exercises . She has mentioned how amazed she is at how much better my balance and vertigo have been. I noticed it too. When I first started going to the pool I was a woobly mess; the last session, on Thursday, I walked the length of the pool without having to have her hold on to me. That’s huge really.

On Sunday I woke up with vertigo. Just a moment and it was gone. I started to move and it was back. Ughumph. Back to my head on the pillow and it settled down. What the? I tried again. Same thing. So, I tried moving my head on my pillow….sure enough, if I moved my head a certain way the vertigo would start, fast! Oh it was BAD! Head back to neutral! Positional vertigo! I have no idea why. Normally when I have positional vertigo it is in conjunction with a migraine. So I took my migraine medication. It didn’t work. All day Sunday and Monday if I moved my head I was spinning. My only relief was to lie on my LEFT side. During the night on Monday it woke me up when I moved my head the wrong way in my sleep. I almost threw up in the bed. ughumph! Then I woke up on Tuesday still feeling very off. I was so cautious, I wasn’t sure I even wanted to attempt to move my head, I decided to just go to the bathroom. I hobbled to the bathroom with the help of my walker my head tilted to the side. In the bathroom I held on to the sink and straightened my head. No spinning. Good sign. I tilted it back. No vertigo! Really? I rotated it around …very…very…slowly…no vertigo. WOW. Yes I’m still very wonky and feel…well…off…but I’m not spinning! thank goodness.

What would this mean if it happened right after my surgery. Should I be thinking about this now? Really how can I NOT? I know I can’t change it if it happens. So, I have to think about it, I just do! I need to figure out a better way to handle this situation if it happens during my recovery. The only way that I was able to really stop the vertigo was to lie on my LEFT side. I’m having my LEFT hip replaced. I won’t be able to lie on that side for a while, at least not constantly for two and a half days. I’m not going to be able to figure this out right now, but I have to think about it. Getting up and down and keeping to the “rules” on how I can bend my hip was pretty darn impossible too. But that will have to be done. Hopefully that will be easier when I have a chair set up for me. Also being able to just lean to the left in the chair but not put all my weight on that side might would work better in a chair? If I have a bad attack and I can’t tell what way is up, or down, or left, or right….I have no balance at all….really, it is VERY hard to explain…there is no way I will be able to control how I fall in a situation like that. I’m not just dizzy, I have no clear vision at all, what I’m seeing is like a camera that is just spinning around and around as fast as it could be….and it doesn’t stop. I can’t tell what my body is doing. It’s not just what I’m seeing, my body feels as if things are moving too. When you are dizzy you feel a little off-balance. When you have vertigo at its worst you feel as if you are being tossed around. When I tell people I get vertigo, they often think I get dizzy. It isn’t the same thing. It’s funny, when I haven’t had vertigo for a long time and then I have an attack I forget just how bad it is. Not really….it is there in my mind….but my body forgets. It has to I think, for self-preservation. If it didn’t I think fear would control my life.

Imagine walking in your house when it looks like this, but it is moving, and you feel like everything is moving? — Imagine walking in your house when your porch looks like this, but it is moving, and you feel like everything is moving?

As it is now, my body handles it much better than it used to. As long as I’m in a safe place, lying down. I ride out most attacks pretty well, thanks to my mindfulness techniques, and a little help from medication. If I’m walking….that is terrifying. When this first started happening my head turned the wrong way when I was coming out of the bathroom and I started spinning fast! The walls moved, the floor moved, I grabbed the wall and held on! Luckily Stuart was right there. (I’m so lucky that normally when I need him most he is right there.) At this time my head tilted to the left and the world straightened. Oh, I had my head at the wrong angle….duh. I knew this was positional vertigo. Remember, living one moment at a time….without judgment.

Since this happened I think it showed me I can’t wait until it happens after my surgery to think about it. I have to think about it now. I am going to talk to my physical therapist, and the post op physical therapist about this. I’m lucky because my physical therapist who works with me in the pool is also a physical therapist who works with patients as soon as they come out of surgery to help them understand the right way to get up and down and stuff like that. She has already showed me some things so I’ve been practicing. I think that’s a great idea, that way I think I’ll be much less likely to goof up after surgery if I’m already getting up and down the way you are supposed to.

Not long now, and I will be in much less pain, but I’ll need to be careful. A few restriction that I think will be hard to stick to. I was talking to a new friend who had this done for the same reason a couple of years ago, and she said that it went so easily that it made it difficult to follow the rules for as long as they say….but it’s very important to do so. I’m going to try my darndest! I’m really good at following instructions, I think, why go through all of this and not follow the recommended instructions? I sure don’t want to mess up and end up having surgery again.

So, this time I think there is a bit of thinking about the future to be done. Not really thinking about it as in, worrying, or planning it out and being disappointed if it doesn’t happen….but making plans to be better prepared. That’s all I can do. I’m not going to fret about it. I will try to be as prepared as I can, that’s it. If things still happen and I end up falling and the worst happens, well then it happens. I will know I did all I could do to prepare. There’s a difference in living in the moment, not living in the past, not worrying about the future….that doesn’t mean you can’t make plans try to be prepared. However, if things go south, don’t get all out of shape, you tried to prepare, that’s all you can do. Keep being mindful. Take one moment at a time. Take care of yourself. That’s all you can do. That’s all I can do.

Avascular Necrosis….that’s a scary diagnosis

On February 26, 2015 By WendyIn Avascular Necrosis, Chronic Illness15 Comments

It’s official, I have Avascular Necrosis (or Osteonecrosis) in my left hip. What is this? Let’s look at the word Osteonecrosis, Osteo – bone necrosis – death. You have to remember that your bones are living things. They have a blood supply. When this blood supply is lost, or disrupted, the bone begins to die. That is what is going one with my hip. Particularly, the head of the femur.

click on photo to find out more about osteonecrosis

I’ll tell you more about this condition after I see the doctor on Monday.

Right now….I can tell you I have it.

I had my CT scan on the 13th. I’ve been dealing with a lot of waiting with this whole thing and I’ve been handling it well, but I decided I’d check in with my doctor via email yesterday, just to see if he could look at my CT scan and let me know what he saw. I was getting a bit anxious. My pain has been intensifying, and my balance has been even worse (not just from my ears), I thought, “Hey, the worst he can do is say he can only tell me these kind of things in person.”

Within 2 hours the nurse called Stuart and told him that my doctor was out of the office, however, she got another doctor to look at my CT scan and yes I have Avascular Necrosis. She also moved my appointment date up from March 24th, to March 2nd.

At this point I don’t know what stage I’m in, but I do know it hurts, a lot…..more than I care to admit. There are treatments that they do try when you are in the earlier stages but, it is a very small chance that you won’t end up having to have a hip replacement. The earlier treatments are kind of like a stop-gap. They help for a while, but most of the time it comes back. It sounds to me like end up doing a hip replacement most of the time. The amount of pain I’m in tells me I may be a little bit further along than we thought, so I may not have to even worry about thinking about all of that. My doctor didn’t sound like he was very keen on putting people though unnecessary surgeries, just to end up having a hip replacement anyway. So, I’m looking at a hip replacement. I know it will make me feel better, and I’m very relieved about that. I look forward to discussing everything with my doctor on Monday and making a plan.

I won’t lie, I’m very nervous about all of this.

Oh heck, I’m TERRIFIED.

I’m afraid of having a hip replacement. I’m afraid of Stuart having no help. I’m afraid of getting this place ready for me to be able to get around in during recovery. I’m afraid that I will get this necrosis in other joints. (since they think my Avascular Necrosis is because of corticosteroid use, it could show up in a different joint, normally the other hip.) I’m afraid of the pain after surgery, I don’t deal with pain medication well, it makes me itch. I’m just scared, OK?

I’m trying very hard not to think about the future…succeeding very well aren’t I?? I’ll be seeing the doctor on MONDAY. We will make a plan then. I will have more answers at that time. Me getting all worried and fretting is doing no one any good, especially ME. So what am I going to do for the next few days until I see the doctor?

I’m not going to read anything else about Avascular Necrosis, or Hip Replacement Surgery.
I’m not going to talk about it….well not much.
I’m going to meditate.
I’m going to do relaxing things….maybe watch a movie, read some of the book I just got from the library on my Kindle…..ect.
Spend some quality time with my husband, something we haven’t done enough of lately.
try my best to enjoy myself….laugh!
eat good and healthy food. I made up a new recipe, I hope Stuart’s up to trying it out.
Take care of ME!

If there is one thing I’ve learned about me, it’s that I’m pretty darn tough!

No matter what, I know I can handle this.

Chronic Illnesses, one comes up, another is put on hold….

On February 10, 2015 By WendyIn Chronic Illness16 Comments

I know, I haven’t posted in a while. I feel like all I do is the same old thing, talk about me, and how I’m falling apart….or how I’m dealing with my life and not falling apart. Hopefully the later more than the former.

Well, here I am again, writing about things going on in my life….I was writing a friend a letter and thought, I really should put this in a post. This is part of the reason I started a blog. It isn’t just for other people, it is for me. To get things out, and to keep up with things. Sorry folks, I hope you don’t mind sometimes just coming along for the ride.

Of course one of the main reasons I started this blog is to let people know they aren’t alone on this Chronic Illness journey. If you are anything like me, if you have one Chronic Illness, you have more….and things are always coming up…..so this is what’s going on right now……I’m a little overwhelmed…again. I’m trying hard to take it one moment at a time, then some times I’ll sit down and think about everything that is going on and just feel drained. Whew! Am I really stressed and just don’t know it?

I seem to always have something new come up and have to deal with it, then I have to put something else on hold. You will understand as I continue. I’m going to try to make this as short as possible.

I’ve had some bladder/urinary tract troubles. I’ve been to a few doctors for this, they run a urine test and it comes back clear, my blood work comes back clear. But I’m in severe pain. They will call it, bladder spasms, irritable bladder, non-infection cystitis….but they all say, they think I have Interstitial cystitis. I need to go to a urologist to be properly diagnosed and to get better medications to help with it, but there is no cure, and some people don’t react to the treatments. I’m lucky I don’t have severe flare-ups very often. However, I do have little flare-ups often. This has been a VERY SEVERE flare. I went to the doctor on Monday, February 2nd. Of course, everything was clear, but I felt I needed to go to make sure I didn’t have an infection. She did give me an anti-spasmotic and they helped get me through the rest of the flare.

This sweet doctor was scratching her head with me, she said, “You have a lot going on for such a young lady.” She kept saying, she couldn’t help but wonder if there wasn’t one thing that caused many of my issues. Some umbrella condition. You know I’ve never had a doctor say that to me before. I’ve had Stuart say it, and friends say it, people on my blog say it, but doctors, not so much. I couple of doctors have thought my migraines and Meniere’s may have a commonality but then they kind of ruled that out…maybe….kind of. I think I might just talk to her again. (she works with my new PCP)

On the way home from this doctor’s appointment I had a vertigo attack start. Got home and it was BAD. I’ll leave it at that. You all know how what a BAD vertigo attack is like. I didn’t keep up with how long it lasted. I know my appointment was at 12:30pm and she was on time, and I was finally able to fall asleep WAY after dark. I woke up sick again and it was about 11pm. I was so nauseous for 2 days. I’m not normally like that. Usually after an attack the nausea leaves me after a few hours. The anti-nausea meds work pretty well. This time, I was really sick for days. Ick.

On that Monday I was supposed to have my intake evaluation to start my physical therapy for my hip. This had to be rescheduled. They didn’t have anyone who could do this for TWO weeks. 1st thing that was put off because of something else going on with me.

The next day I had an appointment with a new neurologist at the Headache Clinic. I had to reschedule because I was simply too exhausted to even move my head, and too nauseous. I was afraid if I pushed it I would have vertigo again. Now my appointment is in March. *sigh* 2st thing that was put off because of something else going on with me.

I went to see a new Pulmonologist on January 30th. My breathing test came out good. I do not have COPD. That’s good to know. So why am I coughing up phlegm every day? EVERY DAY since October of 2012? Yes my breathing is better, but this coughing up stuff is gross. I get awful looks. People seem to think I have some horrible disease. I’m on 3 medications for Asthma that I take every day, and I have an inhaler, that I use often, and nebulizer. And my new doctor said, “I don’t know if you have Asthma.” What? He said he needs to see my old records. He also said that you can be clinically diagnosed as having asthma but they actually have to do a test to really diagnose you, and they often don’t do this test. A lot of people don’t want to do this test, they’d rather just be treated for the symptoms. Usually the symptoms present themselves so clearly that they are sure enough that they clinically diagnose it. That is what the doctors did with me. However, I was not presenting with the symptoms when he saw me. So he needs to see my records.

There is a possibility that my acid reflux may have something to do with this cough. So I need to have a barium swallow on Friday, February 6th . Oh wait….I was still too wiped out from the vertigo attack and in too much pain from the flare-up to be able to do this, so I had to reschedule to February 20th. 3rd thing that had to be put off because of something else that is going on with me.

I did finally get an appointment set up for the CT scan for my hip. It is set up for this Friday, February 13th. I will know soon if my hip does in fact have avascular necrosis. If it doesn’t I do hope this CT scan shows what the problem is, with all the pain I am in, I will be very disheartened if the doctor tells me he can’t find anything. (not that I’m looking forward to, or wanting, a hip replacement)

Trying hard not to think about what may be, just living in the now, and waiting for what will come. After all, none of my worrying about it will change anything.

Want to hear something really funny. After all of the things I’ve been through. All the crazy tests, all the things I’ve been told to give up….different foods and such (for example, I eat mostly whole foods, no refined sugar or gluten. I only drink water. I can’t eat onions, garlic, apples, pears….all kinds of foods…it’s challenging sometimes. But I have to use these food restriction of I get sick.) I have been told in the past to restrict my intake of chocolate because of migraines. Well, I found I could still have a square of dark chocolate now and then and it didn’t bother me. I just didn’t over do it and I was fine. Really, I could eat more and I didn’t have problems with my head, my tummy or bladder might not like it because of the caffeine, but my head was OK. But if I limited it to my little square I was good, all the way around. And I was a happy girl. I could still have chocolate.

Dark Chocolate image from medicalnewstoday.com — Dark Chocolate
image from medicalnewstoday.com

Then it happened. I had my square and immediately I got the worst migraine. Oh no! and my bladder started to scream! What? No!!!!

I waited a week. I tried it again. It happened again! NOOOOOO! Not chocolate!!!!

I literally cried!

I’ve given up so much.

my beloved apples.

dried fruit.

asparagus

onions and garlic

NOT CHOCOLATE!!!!

The moral of the story is….you can take away everything else from this woman, but chocolate is her breaking point!

It’s just so hard sometimes…

On December 8, 2014 By WendyIn Chronic Illness, Meniere's Disease, Vestibular Illness3 Comments

This is a stream of thought post. I just needed to talk and get some things out. So no fixing of grammar or anything. One thing I do want to say before you read this…..I’m not suicidal.

Is everything just so hard right now or is it the life through steroids?

I feel like I’m slipping away. I don’t know who I am half the time. I’m really not handling things all that well….yet in the next moment I am….then I’m not…then I am…then I’m completely melting down and that has been the last two days, and

I just feel like a weight is on me that I cannot lift and it is crushing me,grinding me down further into the ground past the point of breath….I’m buried alive….why, why cannot I still just not die.

Oh I am so ashamed to feel this way. I am just so tired. So tired of feeling the ups, the downs, the hope, the devastation when life kicks me in the gut over and over. And I can’t believe I’m actually writing these feelings out here where everyone can read them.

I do not feel like this. I don’t. This is not how I handle things any more. It has to be the steroids messing with me…it has to be….

But then…there has been so much loss lately…so much stress…and I found out yesterday that it is worse than I thought.

When you can’t hear very well…..let’s face it, I can’t hear at all without my cochlear implants on and working, and for a while now things haven’t been sounding right. So conversations with my husband have not been as communicative as they normally are. I have always been so proud of how our relationship has been so good, because we communicate so well. When you can’t talk a lot, communication seems to fail. He thinks I hear things I don’t. I think I hear things he said differently. And things simply do not get talked about. I’ve been feeling like we just talking much about stuff….and when we do, things just don’t get anywhere, we just get a bit frustrated because I don’t understand things….well…I really didn’t understand something, and I got really upset about it yesterday. I lost it, completely broke down, and I’m still spinning about it.

I thought our finances were doing ok. Not great of course. Tight. We do have a mortgage and rent and everything. But I thought we were ok, not in the negative ever month, being able to pay our bills…paying off credit cards….ect. We aren’t. We are still in trouble. I’ve been spending money recently. I’ve told Stuart when I was going to, or asked him….he didn’t say…”we really shouldn’t be spending”. No I haven’t gone crazy, but I’ve spent when I didn’t need to. We bought Christmas for our niece and nephew that could have cost half what it did. He said, “It’s what we would normally spend.” This makes no sense to me. I’m so distraught. He said….that in about a year we should turn the house over to the bank. What? and we can spend money on gifts??? I can buy things for me? NO. I knew we were in real trouble when Kiki started having diarrhea Friday night and Stuart said, “Oh Kiki please don’t get sick, we can’t afford it.” What? We discussed this before we got a dog. If we couldn’t afford a pet, we should not have gotten one. In my opinion, that is one of the worst things a person can do, and I know Stuart feels the same. (I know we would have found a way if Kiki would have needed to go to the veterinarian, but that comment really scared me.) We are in this situation because of me. We have not been able to sell the rest of the stuff out of the house, or get the house on the market because of me. No, the house may not have sold yet, but we are nowhere near even getting it ready. All because of me. I have gotten too sick for him to leave me alone to go to Durham and take care of things.

Now, how can I not feel guilt about being sick?? How can I not feel guilty for every doctor appointment I have? How can I not feel bad about every extra thing we have to spend because of my illnesses? How can I not feel bad about the trip we have to take to Duke….tomorrow?

We were talking about taking me to special clinics to look for more answers…..HOW could I even think of this??? I cannot allow my husband to lose everything for me. I cannot allow him to work so hard at his life and never be able to own another home, never be able to retire, never be able to do anything but take care of me! NO! I will die first. Please, please, let me die first. I simply cannot live with this guilt or with this lack of quality of life. How do you choose? How do you choose? Am I selfish and allow him to sacrifice everything for me, to help me…where it may end up there is no help, that I will end up just like this forever. Or do I stop it. and say enough. I accept that life will be like this.

I have ups. We’ve seen this, over and over. I have some good times. I had them not long ago. I went for over 4 months feeling so much better. Then I have times like this. Will I be like this forever, or will I have the good times again. Who knows. I cannot predict the future, and I have to stop making up the worst case scenario in my mind.

We have to get more stable financially before I can allow him to sacrifice any more. He does so much. He is so exhausted so much of the time. He doesn’t even see that it is because of me. At least he loves his job now. It is not draining him. He really enjoys it. I don’t worry about him so much there, but am I jeopardizing it? I hope not. Right now that is all I can do. I have to trust that his boss really is as understanding as he says he is. I have to believe. I know his hours are flexible….I hope they are as flexible as they are making them. He does a lot for me. They work around my appointments. Sometimes he leaves in a moments notice when I have an attack. He always gets in the hours, he gets his work done….he says that is all his boss is concerned about. But I am concerned. I do not want him to risk this job over me. (they did just put him in charge of a project, so they must believe in him, right?)

I have to be more involved in the finances and everything as often as I can. I have been hiding. I have not been able to handle the stress of it. I do not deal with instability.

I’m not dealing well with not being able to do anything. With not being able to help at all.

I’m simply not dealing well.

I do so wish we had some help. I wish someone would give us a maid for a day as a Christmas present. Or better yet, a maid service. We used to have one, got a great deal on Groupon, had a maid come in just once a month, and it was perfect. For this tiny place, I’m sure it wouldn’t cost much….well for some. But it would get the deep stuff done. Things that just don’t get done…..oh who am I kidding, a lot doesn’t get done lately. (I think that’s why Kiki got sick, she found something on the floor, I swear she’ll eat anything she finds!)

I’m tired. So tired. Between the spinning head and the aching back, sleep is hard. And now my brain will not shut off….I worry.

Please Please tell me I will be able to deal with this better again after I get off of these dang drugs! But then will the awful vertigo get worse again? I live like that either.

Why does it have to be so hard????

Not the post I planned….

On December 1, 2014 By WendyIn Chronic Illness, Meniere's Disease6 Comments

So I had this post all planned out. I had been working on it in my head. I even had a few little illustrations to go with it. Neat huh?

I really wanted to talk about what has been happening to me over the past few months. All the stuff that has been going on…Physically, Mentally, and Spiritually.

I thought I could get it out. I haven’t been able to write much. To read much. To do much of anything because of the vertigo. Finally, I thought I could do it. I started getting it together. but that’s not how things happened…..

I started getting ready for bed night before last. I had had a strange day. I hadn’t had vertigo, but my ears felt off. (if you have Meniere’s you can know what that means….or it could means something different for me….what they were doing, well, they felt very full, and my hearing was weird – best word I have – I thought that would stop when I lost my hearing and now hear through cochlear implants, but no, my hearing still gets wonky, unless of course I turn them off, then I just hear the increased tinnitus….oh yeah, I didn’t mention that, I also had increased tinnitus.) I also had this weird fainting type of spell. I didn’t faint, but I felt like I was going to, like I was hit by a tranquilizer gun. It was strange. I had to fight hard not to just pass out. I could have gone to sleep, I guess, but it was too scary of a feeling, like if I went to sleep I might now wake up. This has happened a few times lately, I have blamed the steroids, they can make your blood sugar drop, so I eat something and feel better. This time was a bit worse, as it came on very suddenly, and I was hard pressed to even move……so….Stuart checked my blood sugar. I’d just eaten a banana, my blood sugar should not have been low. My blood sugar was indeed not low. It was on the higher side of normal…hmmm. Not that strange since I just had that very ripe banana, but strange since I felt like I was fainting from low blood sugar??? what on earth? Well I ate some protein anyway, and maybe it was the placebo effect, maybe the spell was just ending, whatever…I started to feel better. But I still felt off…and I admit, I ate more, I ate too much probably. But I felt better.

A little while later I went to get ready for bed. I was brushing my teeth and looking in the mirror and thought…why am I moving? Then I feel it and think…”oh shit.” Yep, vertigo. No warning, no strange feeling, nothing….I was just moving….what the?

It was slow so I rushed to go to pee real fast but had to have Stuart help me to bed. (I always try to pee really fast before it gets bad because I always have to go when it happens. It is horrible lying there about to bust to pee and can’t move because of vertigo, but it happens every time! And if I vomit, I will pee too, complete loss of control. So rush to pee, if I can…..so strange how things have changed for me with this…I never would have considered trying to run to the bathroom when this started a just a year ago, now, well….things have changed….)

I got my meds in me and it looked like this wold be a short trip. WRONG! It was a long and bad. Over 4 hours….slow, fast, start to sleep – wake spinning fast, terrified – have to go to the bathroom again! can’t get up….bedpan, humiliation, back – pain! – ….FAST SPINNING – help….slow…..fast…..sick…sick….help….tired….guilt….sorry…..sleep….AHHH!…..slow….sleep…AHHH!……….

Now what?

I was supposed to be going down to 1 steroid a day the next day. Yesterday. I did. I felt bad all day yesterday. I hoped it was just that hangover feel from the night before. Then..Last night. vertigo. just a little, all night, I just kept waking with the bed moving. I handled it.

This morning I woke….AHHH! FULL FAST SPIN! Stuart’s at work, and I have to GO TO THE BATHROOM! and I do not mean just for my morning pee. Oh hell. Whoosh! Whoosh! Whoosh! I can’t move. Which world do I try to step in to? They are moving so fast. Whoosh! Whoosh! Whoosh! Oh I am so sick. More meds. sick. I have to GO!

I grab my phone….text….I can’t see the key board, it’s all a blur…WHOOSH! I type, “Spinning” I think…and hit send to Stuart. I don’t want to bother him, I want to be able to do this alone. But how? I know other people do. How do they do it? How do they go to the bathroom? How do they survive without killing themselves (accidentally or on purpose?) Since this has gotten so bad, I have always had Stuart to help me. I’ve only had to deal with an attack a very few times alone. That was so long ago. It was so hard. I don’t know how to not ask for that help from him. How do I do this alone?

Soon I got a text back. I don’t know what it said…..I texted….”help” hit send.

Then I called on voice. I only have to hit one button. I did not have my cochlear implant’s on, so I could not hear anything. I saw the little numbers start counting, I don’t know if he picked up, I just started talking. “I’m not hurt, I have to go to the bathroom. I need help for that. I’m not hurt. please just come help me to the bathroom. I’m not hurt. can’t get to the bathroom, really have to go…..” then said I hoped he heard me and hung up. I really wanted him to know I wasn’t lying there hurt, but I needed a little help….then I waited….

and waited. and held on as hard as I could. I knew I would soon have to try to crawl to the bathroom…..but then what? I wouldn’t be able to get up on the toilet…..what was I going to do? I kept trying to think. the bedpan was in the bathroom. Ugh! The trashcan? maybe. I’m going to kill my back even more. “I have to GO! I’m going to soil myself soon.” (I really think I may have ended up soiling myself before I would have made the decision what to do. My body wasn’t going to wait much longer.) Then Kiki jumped up and ran out of the room…..”Yes, Stuart is here. Whew….”

So I was saved the humiliation of soiling myself, or the possibility of injuring my back more from trying to get to the bathroom by myself…..or injuring myself any number of other ways. *sigh*

The vertigo won’t go away. It slows way down….right now I feel like I’m on a boat with the constant rocking, and if I move, it gets MUCH worse. I will have full blown spins on and off.

I had an appointment scheduled at Duke tomorrow with my ear doc to get his opinion about all of this, now I can’t ride in the car for that long. We rescheduled it for…I think Stuart said a week or so out. I have increased the steroids and am hoping I can get this under control enough by then so I can ride in the car to get there. What can he do? I have no idea. What is causing this? I have no idea. I thought I had an idea, but now, nope. Where do I go from here? if my trip to Duke comes up with nothing….I don’t know. One step at a time.

I can’t control what happens in the future, but that doesn’t mean I can just sit around and not do anything. I have to consider Stuart’s job. His boss has been so very understanding, but this is above and beyond what we ever thought he would have to be doing. First I injure my back and now this? I’m afraid he is being understanding on the outside and not so much on the inside? Stuart is getting his work done. He works the hours, just often not normal hours. Today he is now working at home. He is going to talk to his boss again about this to ease my mind. He likes this job, I do not want to jeopardize it because of me. But I do not know how to take care of me during the attacks by myself. If they are short, fine. But when I can’t walk all day long because of it? How do I go to the bathroom? Get water? food? We can’t afford to get me a helper, and who would know when I’d need one? (I’m spouting off out loud here, I’m not looking for answers…..just where my mind is right now.)

The guilt about this eats me up. It is crazy to feel so guilty about being sick. I didn’t do it. I have no control over it. Yet, this is the one thing I find the hardest to deal with….guilt. I am so very sorry to be such a burden. At times I will feel like I am past this, but then things like this happen and how can I not feel like a burden. How can I not feel guilty? How can I not feel that I am causing so much trouble for my husband? Believe me I could give a list here of a lot of things that need to be done, that he needs for himself…..ect…..that are neglected because of me….because I’m sick. Guilt much?? I’m working on being much more gentle with myself, non judgmental….I’m better than I used to be, but really, I don’t know if I’ll ever get rid of all of the guilt. It’s a work in progress. I can say it is much better than it used to be. I don’t hate myself, and I don’t think of myself as a complete failure. Those used to be huge thoughts that ran through my mind. Those are thoughts that I hear from many people who are chronically ill and have lost so much of their independence. That’s a sad thing isn’t it? Ah…things I’ve been thinking about…..I’m doing really well with much of this stuff. I really do like me. I try my best to be a good person and I think that’s pretty darn important. It’s just that my body often needs help, and I feel guilty about that. Perhaps, if my husband had help it would be easier. …..eh…..going in circles there aren’t I?

No…this isn’t the post I planned to write. It isn’t well thought out. It isn’t illustrated. It doesn’t give a good account of what has happened. It’s just me. Telling you a little bit how it is now. In this world of mine. would I change things in my world today. yeah, can’t say I wouldn’t. Do I still love my life….most of it yeah. This vertigo stuff can hit the highway though…..but I will accept it. I have to.

This is just how things are right now. Just right now. they were different a moment ago…they will be different in a moment.

I’m actually much calmer about things and I’m dealing mentally with things better….yeah I know it doesn’t sound like it….but really I am (probably won’t be when the steroids start kicking in full force again, but hey, at least I’ll know it is the steroids, right? this last round made me a bit crazy….I do not know what if feels like for a “normal” person to be on a high dose of steroids, but it makes me feel like my bipolar medications aren’t working, however, you sit there and think….is it the steroids or do I really feel like this? ugh!)

It has taken me all day to write this.

I hope it makes some sense.

I’m going to try to write more often. I need to keep up with what is happening to me. So these posts coming up may be up and down or start to sound the same or something….but I really need to just write about what I am going through….

hope you don’t mind….

I might just need someone to listen.

What is wrong with me??

On November 15, 2014 By WendyIn Bipolar, Chronic Illness, Meniere's Disease9 Comments

What is wrong with me? This is the question I kept asking over the past couple of weeks. Heck I’ve been asking this question a lot over the past couple of months, I just keep seem to be falling apart. But I don’t think that way….or I try not to. I accept things as they come. I just roll with the punches. Yeah. Well that isn’t how it has been going. I’ve been trying. But I’m not succeeding right now.

It has just been too much. This post is about the latest….

I mentioned a little in the beginning of my last post: VERTIGO…MAJOR!

It started the beginning of this month. I would just suddenly have this whoosh feeling and I’d start to spin. It just felt different. I can’t explain it. Maybe it was different because I had been feeling so off for so long. I had been having the severe disequilibrium for so long (feeling like I’m on a boat all the time) and not being able to focus on one spot without it moving. Maybe? Really, who knows. But these attacks…they are different. The start, it just feels like I moved my head too fast, but I didn’t move…and suddenly I’m in full spin.

One night I had a drop attack, but it felt different from any I’ve had before, and I haven’t had one in a long time. We were watching Jeopardy, and suddenly I felt like an entity had just come up and partially entered my body and pushed me over on the couch and I gasped…one of those screams where you suck in all your breath…I just fell over on the couch and was in full-blown vertigo. If I had been standing, I would have hit the floor hard! It scared me so much. Not just the falling, but that feeling before hand, I literally felt like there was something trying to enter my body and pushed me over. It scares me just thinking about it.

When it started I had just had a day completely vertigo free. I could focus on a spot without it moving, the boat stopped. Relief.

What happened for that day? What happened after that day? These are questions my mind likes to ask but no one can answer, I try hard to stop the loop of questions, but it’s hard. I’m an inquisitive person. I’ve always been that way, I want to know how things work, I loved science and proving theories. Telling me that no one knows something about a scientific problem is hard for me. I keep thinking I’ve accepted that. And I have. I have. But I don’t want to. I want it to change. I want to know what is happening to me. What changed? And more than that, I want for people to stop asking me that question. It is hard enough for me to not have the answer for myself, but when someone else ask it, it cuts me to the bone. I want to just scream….I DON’T KNOW! Please NEVER say to a chronically ill person, “Why can’t they do anything?” of “I think you need to find a new doctor.” You have no idea how many doctors I have been to and still continue to consider. However, this is my life. It is my decision how I get treated. You do not know what it is like to live with this, and you have no idea what the treatments are….do not tell me what I should do. (unless of course you have this disease then you can talk to me and if you over step your bounds I will feel I can tell you to so. That’s different, we are going through the same crap…excuse my colorful language.) However, normal people do not understand. Heck, some people who have this don’t understand, it’s different for different people.

So….off that soap box and pity party….

I went to the doctor on Wednesday. Yes the doctor here in Charlotte. He really doesn’t listen. I will not go back to see him. I am glad I will be able to see the audiologist here when I can’t get to Duke, but I will have to find a different doctor. (and I don’t feel right going to the audiologist since they don’t get paid, I’ll only go there if I absolutely have to.) They do have a lot of doctor’s in that practice, however he is supposed to be the “head guy” who knows about Meniere’s. I will be doing some research, but if he is the head guy…I am up a creek. Let me tell you about my latest visit.

I did get an appointment rather quickly, that was nice. We got to the office and I had to be taken in by wheelchair. They thought I was in a wheelchair because I had back surgery?? I never said I was having back surgery. I did tell them I had a herniated disc and was having physical therapy, therefore I wouldn’t be able to do vestibular therapy until I got that straight. (Where did this information come from?) He asked me about these attacks, how long they have been happening and what they were like. I told him …bad attacks lasting 30 mins to over 3 hours, 3 to 6+ times a day, coming on with no warning. He asked me to describe the attacks. I looked at him and said. “You know what a Meniere’s attack is like.” Yes, I was a bit snarky. I had been through telling him what my attacks were like the last time I was there. I have never had to tell my last doctor what my attacks are like every time I go in there. He said “Yes, but I want to know what your attacks are like.” I started to tell him, I told you last time, but I didn’t. I said, “severe rotational vertigo, severe tinnitus, want to die!” “Yes, that’s normal” DUH! Stuart them tells him how much my eyes have been vibrating with these attacks. I got him to really look this time, and he really noticed, he as surprised he hadn’t seen it so much before. My eyes really dilate, and I have nystagmus really bad during an attack. I need light or I get really sick, but lights also hurt because my eyes are so dilated. My eyes hurt so much after just a few minutes, after hours…well dang! So the lights are normally dim and my face is in a bucket throwing up, of course my darling husband doesn’t normally see my eyes vibrating. Poor thing felt guilty he hadn’t really noticed as much before. I was having him look because something with Meniere’s one eye will vibrate more than the other telling you which ear is causing the attack…not all the time, and not this time…darn.

Back to the visit. The doctor then looked in my ears and does this thing where he makes me follow his finger with my eyes….he moves his finger really fast. I tell him…that makes me sick. He keeps telling me to look at it. I look but I will not look fast. I am not going to throw myself into a spin in his office just to perform his little test. (I know it is neurological test, I’ve had it many times before, you do not have to do it so fast) I had already taken 3 or 4 Valium that day because of the attacks I’d already had. I can tell he gets frustrated with me when I don’t do the test as he wants. oh well. He asked what I take for my attacks, I told him, Valium and Phenergan. He said, well that’s the best. He asked if I had this happen before. Yes, in the spring of this year, and explained it had been after I had been on a high dose of steroids for my migraines that tapered off too fast. My ear doc had to put me on steroids that tapered off slower. He said, I told me I only have attacks 2-3 times a year. I said, I only have very severe attacks 2-3 times a year, I have small, and mini attacks almost every day. He said nothing. He paid NO attention to that. He acts like since I don’t have severe attacks like I have had the past couple of weeks all the time then this is not debilitating. He really heard nothing I said about how this is affecting my life. He heard nothing about how I can’t focus on things without them moving. He DOES NOT LISTEN TO ME! Why? Later when I got home I was so upset, I talked to Stuart and was in tears, “Did I down play my Meniere’s to him the first time I saw him? He doesn’t understand what this is doing to me.” Stuart then told me…that no, he just doesn’t listen, he only hears what he wants to….I digress again…back to the visit….

So he wrote me a prescription for steroids. Good, that is what I expected. He told me the dose and I thought…That’s High. He then said some people get very agitated and have mood swings on these….I told him I do, and it can be pretty severe on a high dose. He ignored me…”If you have a problem call me” I just told you I have a problem! Listen to me! I explained again about how the high dose prescription from my migraine doctor that tapered off too fast made me spin. He said, “This won’t make you spin, but if you have a problem, call me.” Hmmm, are you listening to me?

I got the prescription and started it. The next day I couldn’t stop crying. I looked that the dosage….and the tapering. 60mg a day for 14 days! then 40mg for 2 day, 30mg for 2 day, 20 for 2 days, ….you get the idea. 14 days then 2 days each…that’s a pretty fast ramp down! and 60mg of prednisone for 2 weeks!! I will be going out of my mind! It is very hard for me to deal with these emotional swings with my bipolar swings anyway. It makes me feel like I am having bipolar episode, and it drives me crazy. I can’t trust my own emotions. I don’t know if all of my mood swings are from the steroids or if I need to be evaluated for bipolar stuff. So, I thought….I can’t do this. I decided to look up my chart on the Duke Patient Portal and see what my prescription was from my doctor there. It was for prednisone, 10mg tablets, so that was all good, but the dosage was much different. I’m following his dosage. He starts out at 40mg for 5 days, then goes to 30 for 5 days….ect. a much slower taper down, and I know I did fine with it. I will also be taking half as many pills.

Is this the right thing to do? Should I be treating myself? In this case….I don’t really think I’m treating myself. I don’t like to go against a doctor’s prescription, especially about steroids they can mess you up! But I know my tolerance to them and I know they do mess me up. I once swore I would never take them again….but sometimes you have to do something that you don’t want to do to survive. I feel like since I couldn’t go to Duke to see my doctor, I’m doing the next best thing. We did call him and he said he felt steroids would help again, but didn’t feel he could prescribe them without seeing me. (My point…as I say in my disclaimer, I am not giving medical advise. I do not advise anyone to ignore what their doctor tells them. This is just my story.)

Good news. The steroids are helping. I’m on day 3 now. The first day I had a mini attack and a few hours feeling like I was VERY drunk, I was more sick to my stomach than I was during most of my attacks, and that is saying a lot! Unfortunately, I had run out of what I had been using to really control my nausea, so I was really sick that night. Yesterday, I didn’t have an attack. I did have that drunk feeling again last night right when I was getting tired, same as the night before, thankfully it didn’t get as bad or last as long. So it looks like things are getting better day by day. Tonight, I am going to force myself to go to bed and to sleep as soon as I feel tired…maybe that will stop that drunk feeling.

that is the story of my last couple of weeks.

It has been hard.

The last few months have been hard. Physically and Mentally. It has also been hard because the doctors I trust are 300 miles away. I’d also like to see my therapist, this has been a lot to process, and I’d like to have her to help me through this with the mood swings. I moved here feeling so much better, with so much hope, so much promise. I thought I was ready to handle anything life through at me. I was wrong. I’m still trying hard to live in the now. I’m trying to accept things as they are, and accept my feelings … nonjudgmentally. that is a BIG thing. I may be having a really rough time, and I may not be able to accept life as it is without wishing it to be different, but that’s alright. I’m just not there yet. Right now I’m hurting, and I need to be here for a little while, and stop judging that. I’m still hopeful and good and happy and loving….it is just that the hurt is in front of it right now. And I’m not going to judge that. I’m just going to wait until it goes away, and since I accept that is here, and a part of me, the faster it is lifting and the other parts of me are shining through.

Deep Breath.

Picnic with Ants

Tag: Pain

Creativity As A Way To Cope

Chonic Pain/Ilness Photography 2015 Project Week 3

Chonic Pain/Ilness Photography 2015 Project Week 2

I Didn’t Expect

Surgery Date, and Vertigo

Avascular Necrosis….that’s a scary diagnosis

Chronic Illnesses, one comes up, another is put on hold….

It’s just so hard sometimes…

Not the post I planned….

What is wrong with me??

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