Tag: Hope

Feeling Better….Part 3 – Mindfulness

On By WendyIn Chronic Illness, Mindfulness11 Comments

When I mentioned writing Part 3 in this series I said it would be on Mindfulness Based Stress Reduction.  I will touch on this subject, but I do not feel qualified to base my whole post on it.  I will tell you how I got involved in mindfulness and how it led to Mindfulness Based Stress Reduction.  (Note: I may refer to Mindfulness Based Stress Reduction as MBSR throughout this post.)

mindfulness quote

There have been a few times when I have read some of the Buddha’s teachings.  My husband has called himself a “non practicing Buddhist”.  After really studying more about Buddhism, I find this funny, but that isn’t a discussion for here.  I mention his interest in Buddhism because it is what caused me to start reading about it.  As I started reading and studying the Buddha’s teachings I found I was happy.  It made me happy.  Buddhism can be thought of as a religion or a philosophy.  Many do not consider Buddhism a religion because it is non-theistic.  You can follow the Buddhas teachings and continue to follow any other religion.  However, that is not part of this discussion, I just thought it was interesting.

An essential element of Buddhist practice is mindfulness.   Mindfulness, as defined by Psychology Today, “is a state of active, open attention on the present. When you’re mindful, you observe your thoughts and feelings from a distance, without judging them good or bad. Instead of letting your life pass you by, mindfulness means living in the moment and awakening to experience.”

I’m sure you have noticed in many of my posts that I have mentioned that I am staying in the moment.  I no longer dwell on the past, I do not worry about the future, I live in the now.  This is just a part of being mindful.  It is also important to note the part about…”without judging them”.  Always be gentle with yourself.  I used to be very bad about that.  Even my doctor used to tell me, “Wendy, give yourself a break.”  This was when I was very sick, I felt guilty about it.  Now when I feel those thoughts come up, I will observe it, and sometimes I get wrapped up in it for a little while, then I notice it and take a deep breath and tell myself.  “Wendy, be gentle.”  and let it go.  I bring myself back to the moment.   I’m still in the infancy of mindfulness, I’m just learning, there’s much more to it than I know.

I have had many people get in touch with me who have Meniere’s disease, and I think every one at one point has said, “I just want my old life back.”  This is, of course, a natural feeling when we get hit with such a devastating illness.  However, this feeling often stays with us for a very long time.  I realized through mindfulness I could let this go, and it was the best thing I could do.  Looking back at my old life and wanting it back was not helping my life now.  Nor was it helping to longing look at the future and hope for things to get better, or to look at the future and just know things could only get worse.   I started using mindfulness to just look at today, and stop looking at my old life, (honestly, I didn’t look at the past for long, I’m one of those people who when they get hit with something says….”what now?”)  However, I was constantly looking forward.  Either with all my hopes on the next thing we tried, or when it failed believing that nothing was going to work and I was going to be bed bound and useless forever.  (no I didn’t feel sorry for myself, I thought I needed to be prepared. well sometimes I felt sorry for myself.)   With mindfulness I stopped doing that.  I started just looking at today.  Living in this day.  That doesn’t mean I don’t make plans, that means I just go with the flow if plans change.  I don’t freak out, I just go with it.   NOT worrying about my future has made my future open to be written as it comes.

One symptom that has changed in such a drastic way because of this practice has been my vertigo.  When I first started my mindfulness practice I was able to stay calmer during an attack.  Then I was able to get through an attack without freaking out at all, I could stay completely calm.  This turned to starting to focus on an object about 18 inches or so from me, I put my hand down on a solid object and breathe, telling myself aloud…”you feel the object is not moving, this is not real.  This is not real, this is solid beneath your hand, it is not moving….” continually focusing on the object.  Soon, I never saw the room spin unless I looked up from the object.   Now, if I feel an attack coming on I can normally take a deep breath and center myself, focus my eyes on something still, and pull myself out of it.  I usually stop the attacks now.   Sometimes it takes a bit.  I have to get cooled down and I need to be still for a few minutes just focusing, but I never start spinning. It will start to rotate a little but I will pull my eyes back to center, take a deep breath and just feel where I’m at.  Tell myself it’s OK.  I’m OK.  If it happens I’m OK.  It’s not real.  Stay centered.  Stay right here.  I’m really just doing what I did during the attacks, staying focused, telling myself it’s not real, but now I’m simply being gentle with myself and letting myself know I’ll be OK no matter what, and it calms down and goes away.  I started to panic the recently and I came very close to having a full-blown attack, we were in the small moving van getting things that were missed by the movers, riding to Charlotte on the freeway.  I was scared because of where we were.  When Stuart was able to stop, I calmed down and got everything under control and it went away.  I was shocked.  I was starting to spin.  It was going, then suddenly it wasn’t.

Mindfulness and my mental health.  My last visit to my psychiatrist was so happy.  She was so impressed.  We talked and I said something about what I told someone in answer to something and she said, “you really have been practicing mindfulness haven’t you?”  We continued to talk and she reduced my anxiety medication.   I’m not sure if I will be able to have more of my medications reduced, but I’m thrilled about this.  It has been almost 2 months and I’m a happy person.  I’ve had some periods of depression, but they were warranted, and were not prolonged.  I have not been seen my therapist in over 2 months….I have been released to see her only as I need.   So far, I haven’t felt the need.   Great news!

Practicing mindfulness is the best thing I’ve ever done for myself.

That was how it started.  Just little things.  It moved to more things.  Somewhere along this journey I started reading about Mindfulness Based Stress Reduction and Mindfulness Based Cognitive Therapy. Mindfulness Based Cognitive Therapy I’m interested in but know very little about, Mindfulness Based Stress Reduction I’m very interested in, I’ve read a lot about, and want to share some with you so here’s a little introduction to it and how I found out about it….

Mindfulness For Beginners by Jon Kabat-Zinn cover photo
Mindfulness For Beginners by Jon Kabat-Zinn cover photo

Mindfulness-based stress reduction (MBSR) (as defined in Wikipedia) is a mindfulness-based program designed initially to assist people with pain and a range of conditions and life issues that were difficult to treat in a hospital setting developed by Jon Kabat-Zinn at the University of Massachusetts Medical Center, which uses a combination of mindfulness meditation, body awareness, and yoga to help people become more mindful. In recent years, meditation has been the subject of controlled clinical research that suggests it may have beneficial effects, including stress reduction, relaxation, and improvements to quality of life, but that it does not help prevent or cure disease. (There have been some studies that contradict these findings, but I found many more studies on the positive side than the negative.)  While MBSR has its roots in Buddhism , the program itself is secular.  (funny thing, I always thought secular meant religious, but it means not religious, so when I was saying non-secular, I was really meaning religious.  I learn something new every day!)

The MBSR program is an 8 week workshop taught by certified trainers.  I have not been to one of these workshops.  They are often expensive.  The one at Duke is very expensive.  When I first read about the classes it was from a brochure at Duke and I was instantly drawn to it and turned off at the same time.   It looked very interesting but the cost was outrageous.  I remember thinking it must be some new age thing geared toward the rich, since the workshop was so expensive and insurance didn’t cover it.

A year or so later, I started learning about mindfulness on my own.  I came across books by Jon Kabat-Zinn.  He talked about how this is something anyone could do and it didn’t have to cost anything.  I knew then MBSR wasn’t meant to be simply for the rich.  I’ve read his book Mindfulness for Beginners, it is very good.  I’ve also read parts of some of his other books.  (they are always on hold at the library and I haven’t been able to finish them before I had to take them back…..so I’ll get back to them…but there are more…Full Catastrophe Living, Wherever You Go There You Are, Coming to Our Senses.….)  I’ve read books by other authors, I’ve read a lot about Mindfulness Based Stress Reduction on the internet and there are a lot of YouTube videos on the subject, many with Jon Kabat-Zinn speaking.  You can even hear some of his books read through YouTube, I found that interesting.   I am reading the book called Mindfulness: An Eight-Week Plan for Finding Peace in a Frantic World, by Mark Williams and Danny Penman with the Foreward by Jon Kabat-Zinn.  This book is much like a journey through one of the workshops.  I’m only on week two, but it is very interesting.  It has deepened my mindfulness practice and awareness.   I had much more of just an informal practice before, I now have a formal and informal practice.  I take a certain amount of time to formally practice mindfulness, and I informally practice it throughout the day.  Before, I would kind of formally practice it occasionally, but now, I have a set time that I practice.  I also had a very hard time meditating before.  Now I’m much more gentle with myself.  I don’t feel I have to do it right.  Ya know, I don’t think anyone really, does it “right”.  It’s right for you. (or for them)  It is will change as you change.  So for now, I must have guided meditation.  Perhaps I always will.  Both of the books I mention above have guided meditations included with them.  There are also guided meditations on YouTube.  (luckily I can now understand recordings through my blue-tooth to my Cochlear Implants, meditation would be much harder for me if I couldn’t do guided meditation).

I realize this may sound like I’m crazy about Jon Kabat-Zinn, not really.  I wanted to learn more from the person who started the program first, but I have found wonderful information from books that were not by him.    Also you do not have to practice MBSR to practice Mindfulness.  It’s all mainly just mindfulness, I think the MBSR books are simply written more therapeutic and less spiritual.   Many of the spiritual books that I found that talk about mindfulness kind of got on my nerves a little. Yes, it’s comes out of Buddhism, but it’s not about religion.  It’s simply a good thing, and I’m sure if you looked in other places you’d find something like it, maybe not as detailed, or called the same thing.  Plus, Buddhism been around a very long time, so they got a jump on it I guess.  haha

This is my story so far with mindfulness.  There is a Mindfulness Based Stress Reduction program offered here through Carolinas Health Care (where hubby works now) that is much more affordable. (no he does not get a discount)  They will even work with people who cannot afford the class, they don’t want anyone to feel they cannot attend because of funds.  We are thinking about attending the workshop in the Spring.   If we do I will certainly blog about the experience.

This concludes my Feeling Better Series.  Hopefully, it will not end my feeling better.

I will now return to my regularly scheduled program…..

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Gratitudes in the middle of a mess

On By WendyIn Chronic Illness13 Comments

It’s time to take a little time to notice some of the things I’m grateful for…before I completely meltdown (again)…I know this will help!

This move has been extremely challenging, mentally and physically.  I am very grateful that I (and I am serious here) am not curled up in a corner crying and trying to hide from the world.  I’m also grateful that I am still able to get out of bed and accomplish some things.  Yes, I am in a lot of pain but, I’m still doing much more than I have in years.  I am so VERY GRATEFUL for this.  I told Stuart last night, I just can’t believe I started feeling better (no not well, but a bit better) right before all of this happened.  Wow!  If I was still like I was just a few months ago now.  This move would have been…..uh, well I just don’t want to think about it.

I’m grateful I sold almost all of my fused glass supplies.  I have only 2 things left and they should be very easy to sell!  Because of this we didn’t have to move any of that!  Yay!!!  Also, because of this I was able to buy our living room furniture.  This made me feel so good.  I was able to contribute to the household.  This is the first time I have been able to do this in YEARS!  (We had to by new living room furniture because the furniture from out old place was too big.)  This is a loan to the house though, as soon as we can pay it back that money goes in my service dog fund.)

I’m very grateful that I met the nicest lady when I sold my fused glass supplies and she actually sold my kiln for me!  How cool is that?

I’m grateful that our new place has a beautiful backyard.

I’m grateful that we live within walking distance to a grocery store and other little shops.  I hope it really is within MY walking distance.  If not now, soon.

I’m grateful there is a park nearby.

I’m grateful Stuart works very close.

I’m grateful we found a restaurant that will make meals that meet my food requirements, and it isn’t far away.  Plus, the very first time we went we got the best waitress, she is the bomb!  We’ve been there one more time and asked for her, she remembered what I needed and helped me order!  Wow!

I’m very grateful I’m still losing weight.  It feels so good to be getting in to smaller clothes and seeing a smaller face in the mirror.  I’m grateful that the diet is making me feel so much better!  What you eat really can make such a HUGE difference in how you feel!

I’m grateful I have the coolest cousin in the world living close by!  Can’t wait to see him and his brood this week!  And it’s so nice we can call on each other!  He’s real family!  If your reading this, I love you man!!!

I’m grateful things are coming together……wait, did I just say that?  do I believe it?  Am I just saying it or do I believe it?  hmmm, let me think.  (Jeopardy them playing in my head…)   I’m not sure.   One thing will happen and it looks like things are flowing along then one thing will happen and things just start going backward…but I know things will end up…the way it’s supposed to be, after all how else could it be?

And yes, I do mean that.

quotes-1523
mediawebapps.com

I’m grateful I wrote this post, because I needed it.  I needed to remind myself that things are going happen.  They are going to be the way they are, no matter what.  I keep trying to bend things the way I want them, I keep fighting to make things happen faster than they are going to, and well, I needed to remind myself…..it’s going to happen, or it’s not, and that’s OK.

Yesterday is gone, I can’t worry about what happened, tomorrow isn’t here yet can’t do anything about it.  So today I’ll do what I can, and that’s it, if something comes up and makes it so things get in the way I’m going to go with the flow and not get all out of sorts.   Just breathe.   It will get done, or it won’t, maybe it wasn’t meant to be.  I’m so very grateful I realize that.

Today’s meltdown averted…..maybe I should have written this yesterday.

 

GRATITUDES in abundance this week!

On By WendyIn Chronic Illness, Disability, Gratitude16 Comments

I’m fickle!  The name Attitude of Gratitude isn’t going to stick.  I didn’t like the attitude part.  Just recognizing that we have things to be grateful for is the most we can strive for sometimes, so my weekly posts will simply be called GRATITUDES!   (I realize this isn’t really a proper word, but I like it!  It has a bit of an, shall I say, Attitude!  ha!  Feeling a big cheeky today aren’t I?)  Now, on with the GRATITUDES!

I have so much to be grateful for this week!

Not to say that there haven’t been challenges, but this post is going to focus on the many things that I am so very GRATEFUL for!

Hubby is working!!!  This week Stuart started a part-time contract position.  It is a position that he is very excited about, doing something that he wants to do.  The company is new, so it’s not full-time, yet, and we don’t know when it will be.  There is more about this that I will tell later…..right now, I just want to say…..I am so grateful that my husband has a job, and it’s a job he is excited about.

My father’s tumor is GONE!  My father was diagnosed with liver cancer this winter.  He has been undergoing chemoembolization treatments.  He went in for tests on Thursday, before setting up his final treatment, and there was no tumor to be found!  He will need no further treatments.  He does have to go back in a few months for an MRI just to be sure, but all looks great.  I’m amazed at this treatment.  Each treatment he has gone in, had the chemo delivered straight to the tumor, and has gone home the next day.  He feels icky for a couple of days and then he’s fine.  He had 3 treatments.  He says he feels great, just old.  : )   Also said, he wants to lose 10 pounds, and he’s thrilled he still has all his hair!  How many 81-year-old men can say that?  I’m so grateful my father’s cancer is gone.

Baby Bunnies
Baby Bunnies

Baby Bunnies Safe.  Stuart was mowing the lawn this week and uncovered a nest of Baby Bunnies!  He was so upset.  He just fretted over these poor little things.  He actually mowed right over them!  They didn’t really move, acted like they didn’t really notice.  He covered them with an upside down flower-pot.  Then he asked me about it.  He thinks since I grew up in the country I know everything about all woodland animals and plants.  I know a little…like the fact that baby bunnies are called kittens, and they have their babies in a nest, but that’s about it.  So off to the internet!  He was afraid mama bunny was going to abandon babies.  He found out that the mama only visits during the night a couple of times to feed the babies.  It said to cover them with loose grass or straw, we had dried corn husk so he put that over them.  It said if there was any sign that there was any digging around then she had been there and all was good. (He saw digging, and the second night, he even saw mama bunny, he was so relieved!) Since the ears are up, and eyes are open, these bunnies are about the go on their way all by themselves.  I told Stuart he was a good Bunny Daddy.  He said NO, he wasn’t their daddy.  I said, Step Daddy….he looked, shook his head and said….Foster Dad.   I liked that.   Bunnies are safe, and the nest is just right outside our back door.   Might be a good thing we don’t have a garden this year.   (our back yard does back up to woods so these bunnies will have a perfect place to grow up.)   I’m so grateful that the bunnies are safe, and that my husband has such a kind and compassionate heart.

I had a BATH complete with washing hair and shaving legs – this may sound like a little thing to many, but this is a VERY BIG DEAL FOR ME!  I have a very hard time taking baths and showers.  Showers are worse than baths for me.  I have to stand in a shower, the only thing helping me stay stable is my feet and my hands on the walls.  If my hands are on the walls how am I supposed to wash myself?  So stability is not very good.  Falling is very easy.  Shower has equaled many disasters.  (I have tried a shower chair, it was not a success.) I can only take a shower if Stuart is with me, unfortunately this is not nearly as much fun as it used to be!  (darn)  A bath is easier, but still a challenge.  This week I did it!  I will tell you all a little secret.  This is the first time I’ve washed my hair in 6 weeks.  Yep.  That’s right.  I washed my hair the week right before my Walmart expedition.  Then I had weeks of having vertigo on and off and constant disequilibrium, I couldn’t wash my hair during that time.  My personal hygiene consisted of washing up at the sink or sponge baths.  Therefore, I am very grateful that I was able to take a bath, wash my hair, and shave my legs!!!

More things I’m grateful for this week!

dandelions
Flowers my hubby brought me when I couldn’t go outside.
CIMG3324
Blue skies I could see from my window. Grateful I could still enjoy the blue sky even if I was too dizzy to go down the stairs.
CIMG3341
Grateful my husband can cook, and made such a wonderful meal! Yummy, Orange glazed Cornish hen with quinoa and roasted asparagus. (no we don’t eat like this every night.)
CIMG3331
Grateful Max still likes to play, and spends a lot of time with me when I don’t feel like doing much. Loving this picture, showing so many of his extra toes!

That’s it for this week.

Some major things to be grateful for, and a few things I’m grateful for that some people probably wouldn’t notice.

What are your GRATITUDES this week?

Me and my blog…..it just is.

On By WendyIn Chronic Illness, Health9 Comments
hearts gray scale
w. holcombe’s heART

After more thought, and feeling much love, I realized hearing the “criticisms” about my blog, and/or me, hit home because I was feeling critical about myself.  I don’t think of myself as a negative person, but I was feeling it, and didn’t even realize it.  My life has changed drastically over the last 4 or 5 years, and the one thing I felt I held on to was my ability to see the best of the situation.  I never asked “Why me?”  I said, “Why not me?”  This is very important to me.  This is a part of my very essence.   I was afraid I was losing me.

Let’s face it, the past couple of years have been very challenging for this household.  Yes, we’ve met these challenges head on, but they just kept coming…..and coming…and coming……..often the solutions have not been as easily forthcoming.

It has been wearing me down.  Much more than I realized.  Not one to dwell on things, I normally allow myself to feel the emotions that go along with a challenge then I make a plan, and deal with it.  “How do I handle this?”  “What can I do?”  “What’s the best way….????”   Unfortunately, many of the challenges I’ve had to face recently have been completely out of my control, or the resolution is not easily obtained.

  • My husband lost his job…..what can I do?  I asked myself that often.  I felt guilty that I couldn’t work.  I tried to get disability and was denied.  (yes I’m appealing, but it’s taking a long time.) Totally, out of my control.  No easy fix.
  • Sandy died.  My best friend.  My constant companion.  I felt lost.  In many ways I still do. I felt guilty.  I felt I let her down.  I know that’s not the case.  The grief has taken a lot out of me.  Out of my control.  No easy fix.
  • I’ve had added health issues.  Out of my control.  No easy fix.
  • My health issues have gotten worse.  Out of my control.  No easy fix.
  • My father was diagnosed with cancer.  Out of my control.
  • ect…ect…ect…….

Yep, I was having a hard time being me.  I’d look in the mirror and think, where are you?  I know you are in there somewhere….come out!   I was ready to hide.  After everything, I felt broken.  And I could not admit that, not even to myself.

I talked on here about my fears, my pain, everything.  I’ve been honest.  However, inside I could not wrap my head around the fact that I was really and truly scared that things would never get better.  No matter how many times I might have said it, and wanted to believe things would get better, the fact that they may not was driving me crazy.  The thought that things would not get any better…..that was just not acceptable.

Then I realized, I’m looking at this all wrong!  I’m thinking too much in the future.  I don’t know what the future may hold.  I have been freaking out over what has been happening, and I have been building up these stories in my mind about how my future might unfold.  These stories have not been great.  This is not a healthy way of thinking!   I cannot live in the future, no more than I can live in the past.  The only place I can live is in the present.  Yes, that sounds very Zen.  Yes, I’ve been reading a lot about this, but it makes sense.  If I’m constantly thinking about what tomorrow might bring, good or bad, I’m going to miss out on today.  That doesn’t mean I can’t make plans, but it does mean I’m not a slave to them and I’m not going to get all bent out of shape if something happens to change them.  It also means I’m not constantly looking back thinking, “I just want my old life back.”  that’s not going to happen, I’ve known that for a long time.  Focusing on the present gives me the opportunity to enjoy my life as it is, without disappointment about dreams that didn’t happen, or romanticizing about a past that I can’t have anymore.

In short, my outlook is changing.   Luckily, so are things around me.  Would my outlook be changing if things were continuing to be spiraling downward?  Yes, I think it would.  I think it has been, I just haven’t been writing about it here as much as I probably should have been.  It’s a work in progress, or to put it more correctly, I’m a work in progress.  I always will be.  So will this blog.

I want to share with my readers, my friends, this side of me.  It is time to share more of the side that is brave, positive, compassionate, and thankful!

Yes, I will continue to come here and speak open and honestly about everything – all of it!  I can’t help it, it’s who I am.  If you would have suggested that I close the blog, I would have turned it private and continued to write, just for me.  This stuff has to come out somewhere!  However, I want you to see how I am handling the rough patches,  how grateful I am for all the little things in my life, and how much I really do enjoy my life….”ants” and all.   But there will be times when I don’t handle things well, and you will continue to hear about that too.  It’s all part of living with chronic illnesses!

I’ve decided to challenge myself a bit.  Each week I plan to write a post called Attitude of Gratitude.  These posts will include things I’m grateful for that week.  These posts may include pictures, drawings, stories, words…..or some times it may just be one word….who knows.   I want to make sure I never let a week go by that I don’t think about things for which I’m grateful.  I try to do this every day, but we all know some days we just get a bit overwhelmed.

You are welcome to join me in this challenge.  We can make it an official challenge if people are interested.   I’m going to do it, for me, and hopefully to inspire others with chronic illnesses to look around and notice the little things that they can still be grateful for.

Thank you all for taking my Poll!  It was an overwhelming landslide that I should continue to write as I do.   I promise I will continue to write as open and honest as always.  I will continue to show the bad and the ugly sides of my illnesses, but I want to even it out and show the more positive sides too.  Yes, there really are some!

I’m so very grateful to have such wonderful friends!  (many who I have never met in person)

The comments and emails I received after my last post amazed me!  Thank you all so very much!

A Tiny Bit of Independence Restored.

On By WendyIn Advocate, Chronic Illness, Deaf9 Comments

On the 18th I had an appointment with my neurologist, she is a headache pain specialist, to get the Botox shots for my migraines.  I get these injections every 3 months.  They do help.  No, they don’t take away all my migraines, but I don’t have to take near as much medication, and I’ve noticed the migraines I do have are very often much less severe than they used to be.  Also, No, they don’t work on wrinkles.

fairy doctor
Doctor Fairy: fairiesbynuria
(Please click on image to be taken to fairiesbynuria’s etsy page,
she makes the cutest fairies for all occassions)

My doctor is a little lady, so very cute and sweet.  She reminds me of the good fey (for those of you not into fantasy books, according to Wikipedia, “Fey is an umbrella term referring to fairies, pixies and sprites in the broadest sense“…this is a very simple definition, but you get the idea).  I have told her she’s my sweet good fairy who gives me little bee stings that make me better.  It has become our little joke.  It’s also quite amusing to me as fairies are normally very mischievous and often not of a good nature…so giving me little bee stings would be something I think just might do!  *giggle*

This dear sweet woman has the softest most feminine voice I think I’ve ever heard.  I cannot imagine that she could ever speak loudly, believe me, I’ve seen her try.  She has tried to hard to make sure I could hear her, but I just couldn’t.  Therefore, I’ve never been able to have a conversation with her.  She always looks so sad, yet hopeful, when talking to me.  Sad that I haven’t been able to hear her, yet hopeful that I will be able to some day.  I have been seeing her since before my first Cochlear Implant surgery.  Now I have 2, and the last time I saw her I had recently had the second one turned on.  I still couldn’t hear her.  She looked so….well, sad.

When she walked in the room yesterday the first thing she said was, “How’s your hearing? How are the new CI’s working?”  And I answered her.  I heard her!!!  So I could actually answer her, not stare at my husband waiting for him to answer for me.  She was absolutely giddy!  I know I kept her too long and made her get behind schedule because she and I just chatted for a little while.  I’ve never seen her so delighted.  She told me when she saw my name on the list of patients for the day she was hoping I could hear.  Isn’t that just the nicest thing?  I thanked her for thinking of me, she answered that she thinks of me often.  Wow!  What a great doctor!  And she’s not even my ear doctor!  (Just a note, if you are suffering from Migraines, try your best to find a neurologist who specializes in headache pain, this has made the world of difference for me.  It has given me a better quality of life…at least on that front.  If you want to ask me about my doctor at Duke, feel free to write me.  Look under the About Me page.)

After receiving my “B” stings.  (yes, B stands for Botox…hahaha…I’m being a little silly today too!)  We wrapped up the visit and she started to leave, I came so close to grabbing her and hugging her, but I wasn’t sure about how she would feel about that.  She started out the door, then suddenly came back in and grabbed ME and gave me a hug!  I was so surprised, she was just so thrilled about my progress!  She made my day!  I would have been thrilled at the fact that I could hear her, but to have her get so emotional about it, well that made me feel so loved.

Before this visit I thought about requesting CART (Communication Access Realtime Translation) for my visits to see her.  I decided not to because while giving me the shots she spends a lot of time behind me, and I have my head down so I can’t see anything, a translator wouldn’t help much.  To find out more about CART, please hover over the word CART and click to follow the link to the National Association of the Deaf.  I’m so thrilled I didn’t have to use this service to be able to hear my physician.  Hearing her without my husband’s help was so liberating.  Just a tiny bit of my independence restored.

A New Year….what will it bring?

On By WendyIn Chronic Illness9 Comments

“Change is inevitable, growth is intentional.”    -Viktor Frankl

In the beginning of 2013 I was so sick I didn’t even write a New Year’s post.  I was so depressed, and so very, very ill.  (yes, I know this one is a few days late, but it’s still the beginning of the year, right)

So what will the 2014 bring?  I’m not sure, but I know it will be a change.

Nothing is ever permanent.  I may feel I’m always sick and feel horrible, but if I look at every day, every moment, that isn’t true.  It’s not a constant.  Life is not constant.  I want to remember this, and work at being mindful about each moment.

I don’t want to make resolutions, because, let’s face it, very few resolutions are actually carried through.  But there are a few things I want to strive for….if I don’t get there, it’s OK.  Things change.

  • As I’ve already said, I want to be more mindful about each moment.  If I’m doing something I want to really pay attention to what I’m doing.  I do not want to multi-task.  I want to be present in the moment, each moment.
  • I’m trying to eat much less meat.  I know this is going to be a challenge because of my food limitations, but I feel the need to do this.  One day recently I realized if I had to kill the animals we were eating I wouldn’t eat them.  I’ve felt this way for a long time, but I didn’t really take it to heart.  But now, I simply feel I need to do this…so I’m going to try.  I’m taking it slow, and I’m not going to go crazy if I happen to have a bit of meat…just one moment at a time.  (I am still eating eggs…trying to only get pasture raised, and I’m eating some dairy…trying to only eat dairy from a local farm where I know how the cows are treated.)
  • I want to meditate more…I’d like to do this much more regularly than I have been.  I have found that this really helps me when I’m having a vertigo or asthma attack.  I can calm myself and that makes things much easier to get through.  However, I’ve found it is hard for me to meditate for long times, at least for now…so I will start off slowly (if I strive for a couple of minutes, then I’m sure I can succeed)  and work my way up..
  • I want to become happier with my appearance as I am now.  I’ve been so obsessed about losing weight, it has caused me to have very negative feeling about myself.  Yes, I haven’t been able to lose weight because of mitigating circumstances (like not being able to exercise, and taking meds that cause weight gain), but I blamed myself.  I feel if I feel better about myself the size I am I will have accomplished a lot!  I also feel that until I feel more self-confidence about my appearance, it will make it harder for me to lose weight.  That may sound counter intuitive, but when I’m unhappy with my body I get discouraged, and think why bother.  Discouragement, breads self-deprecation for me.
  • I’d like to blog more.  This past year was very hard, I can think of a few reasons it was harder than normal, and hopefully these things will be changing soon. (for example…Stuart getting a job, me getting the asthma under control….)  I don’t like to always sound like someone who is just full of heartache when I blog, so I didn’t blog as much.  I have found that I need to share more with others, the good, the bad, and the ugly.  Someone out there may be feeling the same way.
  • And I’d like to challenge myself more.  I know I will have to do this when Stuart goes to work out of the home, but I think it will be good for me.  Sometimes, I feel I rely on him too much.  It’s much easier to ask him for help with something than to risk doing it myself.  My mantra on this must be….”slow, take it slow.”

There are many more things I could add to this, but as I said, this isn’t a list of resolutions, just some plans that may change as the moment changes.

note: for some reason WordPress would not let me insert a picture in this post…sorry for just words, words and more words.

DENIED!

On By WendyIn Chronic Illness, Disability6 Comments

 

Disability Knocks
Disability Knocks

Yes, I know MOST people are denied disability the first time they apply, but this is the first time I’ve heard this crazy reason!

I was found to be DISABLED….Yes!

But was Denied because I waited so long to file.  What?So what is too long?  I had to be disabled before 2010.   Again, What?  My disability date was November of 2009!  So what are they reading?  And how can you screw up that bad?

So the appeal has been started.  We do have a lawyer who is taking the case, and she is kind of scratching her head asking….What?? too.  This time I will have witnesses as to when my vertigo actually started interfering with my work.  The disability date I used before was the date I had the vestibular testing, since that’s a requirement for Meniere’s to be considered a disability.  However, in 2002 or 2003…I’ll have to look it up…I started having severe vertigo, was sent to the emergency room.  I was managing a Custom Frame Shop at the time, can we say Dangerous?  I was found on the floor in the frame shop in full spin, another time I made it to the bathroom and was in there for close to 3 hours throwing up.  Fellow employees from a different part of the store had to take me home more than once.  We had to close the frame shop many times.  I had to quit because of my health.

There are more stories like this…soooo, they denied my disability claim that started in late 2009, now they may find out I was disabled before that, and they have to pay from the date of disability.  Think it would have been better if they had just approved it the first time.

Even if I had not worked within the given time, it’s not fair to be denied.  I was lucky, my husband made enough money that I didn’t need disability, but times have changed.  I need this now.  I should have filed earlier, but I didn’t.  Now, I’m being punished for not taking money from the government when I didn’t need it.

So as I said before….What???

Filing Disabilty

On By WendyIn Chronic Illness, Disability4 Comments

We finally filed the paperwork for disability, and two days later I got a packet wanting more information about how my illness(es) limit my activities.

This entire process has taken so much out of me, it is so depressing.  I do not think of myself as being so dependent and disabled as i really am.  Writing it out is taking its toll on my psyche, and making me very scared about hubby taking on more responsibility outside of the home.

I was just filling out the papers and it asked what I could no longer do because of my illness that I used to do.  It gave me one line.  Really?  One line?  I realized I could probably write a book!  I listed some of the most important things and then said there were way too many things to list in that area.  I should probably add a new page.

When I think about it, the question should be, what can I do now that I could before.  I used to do be able to do more than I do now.  Now, I spend most of my time in bed.  That needs to change, even if I just go to the couch.  But the headaches are happier in a dark room, and my bedroom has been made dark, no other room is.  I can still type on the computer…well some days.  Some days, like recently, I’ve been having low-grade vertigo for days.  I have been having a heck of a time.  Every day I feel like I can’t move my head, things move, just not very fast.  In the evenings it gets worse, much worse.  (perhaps my Intracranial Hypertension meds need to be adjusted?…who knows.

The paper asked me if I have any unusual fears or behaviors.   Wow!  That got to me.  I actually had to admit my fears.  My fears that I will have an attack in public, my fears that an attack will hit any time (of course these fears are very justified).

The Bath by cristalart at deviantArt.com
The Bath by cristalart at deviantArt.com

But then there is the fear of taking a shower or bath…yes, I am absolutely terrified every time I have to bathe or shower.  I’ve had an attack in both places, I never feel steady in either place, and I’m simply scared.  I can’t be in either without someone (Stuart) in the bathroom with me, often in the bath or shower with me.  Washing my hair is the worst.  Having the water on my head, the temperature change, my head goes crazy.  It doesn’t seem to make a difference if my hair is long or short, it is hard.  At least when it’s long I can go longer between shampoos, I can just put it up in a pony tail and no one knows.  (luckily I have dry hair).  I normally wash up at the sink, and when I can’t do that because of my wonky head, I use wipes.  Still, I miss my lovely baths.  I used to relax and enjoy a bath.  I’d light candles, read, or just soak.  It helped my sore muscles and it made me feel pampered.  Now, I’m embarrassed because I’m a bundle of nerves and crying just thinking about the fact that I need to take a bath.

Many days I’m afraid to get out of bed.  I will wake up and I’m just not sure.  OK, I feel like I could, but do I risk it.  The last couple of weeks have been vertigo attack after vertigo attack, I hate to be unprepared for an attack, and it’s easier to ride out in my bedroom.

I’m not trying to sound pitiful.  I don’t want that.  I am trying hard to make things better, and I have had a few decent days.  Yes!  Celebrate the good days!!!  It has just been hard writing down all my limitations.  It’s also hard telling them, well sometimes I can do this, and other times I can do this, but most of the time I can’t do most of it.  However, I do hope it gets better.  I even said that in the paperwork.  I do hope I will be able to do more, but I know I will always have severe limitations.

Funny thing….when they asked what I used to do that I can’t do now, I just realized I didn’t say “Hear”.  Ummm, you would think that would be the first thing I thought of…but no..?

But that’s another story.

Grateful during a Rough Year

On By WendyIn Chronic Illness12 Comments
Buddha, by Wendy Holcombe
So much to be grateful for…

Yesterday Stuart and I were talking and I told him I was grateful for many things this year.  He looked at me a but stunned.  Yes, it’s been a rough year.

  • I was diagnosed with Idiopathic Intercranial Hypertension, this knocked me off my feet for a while, and I got a bit depressed over it…but I’m so very grateful that the medication works!
  • I’m still having severe vertigo attacks….but I’ve only had 3 or 4 this year…That’s amazing, and something to be grateful for!
  • I have migraines, and migraine associated vertigo – I’m grateful I have a super doctor now who specializes in headaches.  I’m also grateful that the vertigo I have with migraines, is not as severe as the Meniere’s vertigo.
  • I lost my dearest companion of 19 years….I still miss my Sandy so much every day – but I’m so grateful she did not suffer, and I’m grateful for all the wonderful memories I have of our lives together.  “Everybody Loved Sandy”
  • I’m grateful my father pulled through a near death experience, and my sister was there to help him.
  • I had a very hard time after someone wrote me a note that simply shook my world, and not in a good way.  I’m grateful (thanks to studying Buddhism) I can breathe in that hate, and breathe out happiness and love toward others.  I’m also grateful that I do not have to send a reply.  It’s a rough thing to accept, but some people will not like me, may even hate me, but as long as I still like me, I’m ok.
  • I lost my hearing in my left ear as of July last year (2011), and have greatly reduced hearing in my right ear.  I’m very grateful for modern technology, with my cochlear implant (received July of this year) and hearing aid I can hear.  I may not be able to hear as well, but with the help of technology I am not deaf all the time.  I’m so very grateful for this!
  • (**a TMI note)  I was diagnosed with vulvar vulvodynia, a painful condition of the vulvar region.  I’m so grateful that my doctor gave me topical Lidocaine, now my husband and I can have relations with much less pain.  (thank goodness there are times my head stops spinning long enough to try this.)  : )
  • I’m grateful we were able to come to Tucson for the winter.  The trip out was not as hard as I expected….Thank Goodness.  The time we’ve been here so far has been rough, but I have faith I will feel better and better.  I’m so grateful for the beautiful weather we’ve had so far.
  • With every challenge I’ve been through this year….and I haven’t mentioned them all….I’m so grateful my husband has been right beside me, holding my hand, being the best advocate for me (he has to make many calls for me since I can’t hear on the phone, he’s a wonder at making doctors understand), he loves me, and thinks I’m so very special.  I tear up just thinking about how very lucky I am to have married this wonderful man.  (I am most grateful for my husband and our relationship.)
Stuart and me, a couple of years ago.
Every time I look at this photo I can feel the love pour over me.
I’m so very grateful for the love my husband shows me. (photo by Jenn Dorff)
  • And last but not least, I’m grateful for my friends.  Especially the special people I’ve met through this blog and others.  It makes me sad that others have to go through chronic illnesses with pain and suffering, but I’m grateful we can share our experiences with each other and know we are not alone.

There are many other things I could list that I’m grateful for but this post would be very long indeed.  This post has made my lightened my heart and helped with things I was coming more and more depressed about, I believe I should take the time to notice the things I’m grateful for much more often.

If you are in the US, may you have a safe and joyous Thanksgiving.  (remember, take care of yourself first.)  I was not able to partake in the family festivities today, a migraine and unsteadiness simply would not allow it.  (especially with all the noise, I admit I was afraid, this would have been the first get together since I got my CI, it’s scary going into a situation with a lot of noise when you can’t hear like you used to.)

May we all remember to take time to think about the things for which we are grateful.

Invisible Illness Week – 30 things you may not know…

On By WendyIn Chronic Illness, Disability, Meniere's Disease10 Comments

September 10 -16 is National Invisible Awareness Week – If you’d like to get involved check out the official site. 

30 things about my illness you may not know.

(warning, some answers may give too much information, but it’s not detailed)

See, I don’t look sick. This photo was taken in 2009, right before my first ear surgery.
  1. The illness I live with is:  The main illnesses I live with are Meniere’s, chronic Migraines, Bipolar I disorder, and chronic hip and pelvic pain.  If you are interested in my other illnesses please see the the tab above titled The Ants That Bite.
  2. I was diagnosed with it in the year:  I don’t remember any more.  I think I was diagnosed with Meniere’s in 2001, Migraines (I’m not really sure, I’ve had doctors tell me on and off since my teens that I have migraines, but they became chronic in my late 20’s…I’m 49 now), chronic hip pain and pelvic pain – they haven’t figured out what is causing all the pain, so no diagnosis.  Bipolar I – 1990 then was told they were wrong – re-diagnosed in 1994.
  3. But I had symptoms since:  Meniere’s – the first attack I remember was in 1993.  Migraines – the first one I remember, I was 11.  The pelvic pain – in my early 30’s,  in the mid 1990’s.  The hip pain – 2008. Bipolar – in my teens.
  4. The biggest adjustment I’ve had to make is:  These are a few major ones for me….  Losing my hearing.  Not being able to drive.  Not seeing my friends like I used to.  Realizing that I will never be cured.  Not being able to have a sex life without pain.  (but I’ve dealt with, or am dealing with all of these.  They will not keep me down.)
  5. Most people assume:  I can do much more than I can, after all, I don’t “look” sick.  And some assume I use my illness to get out of social situations, but honestly I hate being so solitary
  6. The hardest part about mornings are:  Never knowing what the day will bring.  I often wake up with a blinding headache, I know what that day will bring.  But if I wake up feeling decent I never know if I’ll continue to feel that way, or if I’ll be hit with a Meniere’s attack or Migraine.  However, I try to make the most out of every day.
  7. My favorite medical TV show is: Ummm, funny, I used to watch some medical TV shows, but I don’t any longer.  I think I see too much of the medical community in person.
  8. A gadget I couldn’t live without is:  I suppose I could “live” with out most gadgets, but there are some I wouldn’t want to!  My Cochlear Implant, I can hear so much more now. My laptop -so many of my friends are in there!
  9. The hardest part about nights are:  Trying to sleep, and trying to stay asleep.  Fear.  Fear of having an attack just as I’m falling asleep (this happens more than I’d like to admit), fear of waking up with a blinding headache……However, each night before I sleep I acknowledge my gratitude for the day, and plan what I’d like to do the next day.  I always have hope I will have a good day, and if I don’t I still know I’ll get something out of it.
  10. Each day I take __ pills & vitamins. (No comments, please)    18 daily (this included the total number, not different medications), 5 as needed, 4 vitamins daily, and one B12 shot a week.
  11. Regarding alternative treatments I:  have tried many, including chiropractic, acupuncture, certain vitamin routines….  I found medical massage helps my migraines and hip pain a lot.  I also use a special diet to treat gluten and fructose intolerance.
  12. If I had to choose between an invisible illness or visible I would choose: I don’t think anyone would choose to have an illness, but I’ll deal with the hand I’ve been dealt. 
  13. Regarding working and career:  I don’t work.  I don’t have a career.  Takes a lot out of conversations with others.  My doctor suggested I look into filing for disability, but I haven’t done it yet.
  14. People would be surprised to know:  I often don’t wash my hair for a month or more.  Water on my head is a trigger for me, especially if I have to close my eyes.  Luckily, my hair is pretty dry, and it’s long so I just tie it back.
  15. The hardest thing to accept about my new reality has been:  There are a lot of times I have to say” I can’t” or “no” to people…and to myself.  Losing most of my independence.  Not being able to drive.  And not being able to have a normal sex life.
  16. Something I never thought I could do with my illness that I did was:  Find the positive.  Become my own advocate.  Fire a doctor.
  17. The commercials about my illness:  The only one of my illnesses I’ve seen commercials for is Migraines.  Commercials are always drug companies wanting you to talk to your doctor about their drug.  I’m not comfortable with this, and normally the side effects they list are pretty scary.
  18. Something I really miss doing since I was diagnosed is:  I miss being able to go places alone.  (the answer to this question changes often, but right now, not being able to go anywhere alone is very difficult.)
  19. It was really hard to have to give up:  My hearing.  Even with technological help, I have a cochlear implant (CI) and a hearing aid, it is still very hard to hear at times.  I know my hearing with the CI will get better, but it has been very hard to loose all my hearing in one ear, and almost all of it in the other.  Without technology, I can’t hear anything.
  20. A new hobby I have taken up since my diagnosis is: Blogging. Reading a lot!  I’ve always liked to read, but now it’s almost an obsession.  (thank you to Kym for my Kindle!   Oh. another gadget I wouldn’t want to live without.)
  21. If I could have one day of feeling normal again I would:  I would be so very thankful!!  Then I’d spend a day pampering my husband, in and out of bed.  ; )
  22. My illness has taught me:  To be my own advocate.  To be more tolerant…I thought I was tolerant before, but I realize I needed a wake up call on that one.  That I’m not alone….this one relieves me because I needed to feel that someone understood, but it makes me so sad that others have to go through what I have.  And that I can handle much more than I ever thought I could.
  23. Want to know a secret? One thing people say that gets under my skin is: Any form of, telling me I’ll get better.  “When you get better….”,  “You will beat this….”   NO, I won’t.  This doesn’t go away.  I may be able to find something to make it more tolerable, but it will never go away.  And often treatments that work, stop working.   I also hate it when people say, “You don’t deserve this”  I know they are trying to be kind….but I never thought I deserved this!  And one more….”But you look so good.“
  24. But I love it when people:  Tell me how they are doing, want my opinion, want to talk to me as a friend…..Don’t get me wrong, I don’t mind if someone asks about my illness, if they are interested and want to know more about it.  But, sometimes I feel like people forget I’m anything more than my illness.
  25. My favorite motto, scripture, quote that gets me through tough times is: This may not be the life I expected, so I’m changing my expectations.   I don’t know if this is a quote or anything, it’s simply something I thought one day and it has helped me through accepting a lot of things that have had to change.
  26. When someone is diagnosed I’d like to tell them:  Often people who have been recently diagnosed find my blog and it scares them, so I start off telling people:  Everyone’s journey with Meniere’s is different.  Most do not get to the stage I’m at, so please don’t think you are going to lose your hearing….or any number of things I’ve been though.  I’m in the very rare group.  I let them know there are many treatments to keep Meniere’s under control, and point them to sites and other bloggers who can give a different perspective.  Most importantly, I assure them, they are not alone.  They can contact me any time, and there are online groups.
  27. Something that has surprised me about living with an illness is:  That my husband and I have gotten even closer.  Thank you to our therapist, I think having to go to a therapist about all of this surprised me too.  I was not handling losing my independence very well, and hubby wasn’t communicating very well.  But by going to a therapist we began to communicate out needs much easier, and recognize our needs.  Another big surprise is that people will reach out to me.  I’m very surprised that I’ve touched people, and made some honest friendships with people I’ve never met.
  28. The nicest thing someone did for me when I wasn’t feeling well was:  (This does not include things my husband does for me)  Come to visit me.  It doesn’t happen often, but I do enjoy other people’s company.  I hate that I often have to cancel when someone wants to do something with me.  I’m already so isolated, and if I have to cancel people often think I don’t want to see them, or I’m just too much trouble.  I don’t blame them, most of my friends have families, and they have to work their schedule around a lot of things.  So missing a visit makes it harder to make plans the next time.
  29. I’m involved with Invisible Illness Week because:   Because I have more than one. Some people I love and care about have invisible illnesses.  We need to let people know we are still people, but don’t judge us by how we look.
  30. The fact that you read this list makes me feel:  That you care, and maybe you understand some things about me you didn’t before.