Tag: Meniere’s Disease

Sick and Confuddled

On By WendyIn Chronic Illness16 Comments
mushroom with quote
photo by S. Holcombe.

I recently wrote a post that could easily have taken up 3 posts worth of writing.  You know if I wrote that much in one sitting I have a lot on my mind.  You also know if I’m making up words to say how I feel, I’m in a one heck of a state!

Some of the things I have written you will still see, I’m breaking it up into a couple of post, some of it you won’t….I have decided I just can’t talk about it here.  Maybe some day, but not now.  I want to, I think it will help some people, but it’s just something that I can’t talk about yet, at least not here.  And that’s hard on me, for a number of reasons.

So…on to what I will talk about…   (and it turns out this post is MUCH longer than anticipated….yep it’s one of those days.  as you get to the end you will understand, but forgive any errors please, I couldn’t go through and edit this, I am in too much pain.  But I wanted to get it posted.  at least part of it needs a voice…..)

Saturday my father and sister came for a little visit.  It was nice.  Even though we only live one state away we don’t get to see each other much.  They don’t get to come often, and I can’t travel very often.  Unfortunately, since our trip to Tucson, 2 years ago, I haven’t been able to travel at all.  I thought it was going to be better the last few months, but then I hurt my hip.  Now I can’t ride in the car across town without being in severe pain.  So who knows when I can go to South Carolina.  Thankfully, my sister brought my dad to see me.  We had a nice lunch and visit, then they were on their way.  Before they came I decided to get a shot of Toradol, an anti-inflamatory to help me not be in intense pain while they were here.  I wish I could have them more often, but you can’t take them on a regular basis.  I was very pleased that I could visit with them without worrying too much about the pain.  I was also happy I could hear them fairly well.  I couldn’t hear my father at first, but after a little while I realized if I sat closer to him I could hear him better.  What a relief.  I felt bad that I could understand everyone else, but was having such difficulty understanding him.  All in all, a good visit.

After they left I decided my hip was still feeling well enough we could go and meet the dear lady from the agency who had Kiki and make her adoption final.  So off the Pet Supermarket we went.  Luckily, they are very nice there and let me have a chair to sit in while we shopped a bit and adopted our newest family member.  Since the vet thinks Kiki is between 1 1/2 and 2 1/2 we decided that her adoption date is her 2nd birthday!  So September 27th is her birthday!  She was lavished with gifts.  She got a new sweater, because she has been cold on some of these early fall mornings when she goes out.  It is red, and looks quite fetching on her sleek black and white body.  She also got a new toy that she loves!  She has abandoned all of her other toys for this toy, it is so funny!  She also got a new tag, a little purple heart with her name and phone number on it….we need to get her microchip reprogrammed.  She is officially ours now!   I was so very happy when we were in the store and one of the people who work there told me that he had seen Kiki so often when she was there waiting to be adopted and she looks like a different dog.  She is so happy and well mannered.  He said it is amazing how much she has changed in just the short time we have had her.  That couldn’t have made me happier.  I knew then, that yes, Kiki really was meant to be our little girl.

Saturday night I was getting ready for bed.  I was sitting on the side of the bed taking my night meds and suddenly I felt the Meniere’s signals.  Okay, this has not been unusual lately.  I’ve been very acute for the past month or more.  Having mini attacks many times a day, so I wasn’t worried.  I took a deep breath and calmly tried to focus.  Then FLUSH..heat through my body.  Ugh. OK.  Calm. Focus.  You got this.  Whoosh.  better lie down.   Focus.  feel the hand on the table it is steady.  you are not moving.  HEAT.  HOT. I’M ON FIRE.  Stuart walks in.  “Attack?”  “yep. ice.”  Focus.  breathe deep. calm. calm.  Spinning faster.  wow.  deep breath. focus calm. you got this. it’s ok.  spin. stop. spin. stop.  breath…..Ice..Good!  Still hot.  chest hurts.  can’t breath deep.  calm. spinning fast still.  calm. calm.   it’s ok.  it’s part of you.  you can do it.   “Stuart…shot please”   focus calm.  calm. so tired.  (took meds earlier.  Stuart got shot ready,(I’m lucky I have Phenergan shots available to me, it is an anti-nausea/vomiting drug) he was about to give it to me and dropped it. Couldn’t find it.  suddenly spinning stopped.  yes.  OK. rest.

BAM. started going the other way!  What the?   OK…calm down. but this is weird.  you can do it.  focus. feel your hand. –  what the heck is happening? this is not right. –  it’s  all OK.  focus. calm calm.  focus.  it’s just different. – no, this is very different.  now it’s jumping all around.  what is going on? –  calm down. calm down.  calm calm.  focus. it’s kind of freaking me out he can’t find that shot – focus on your focal point.  it will be alright.  – I need the damn shot!  I’m getting scared. –  shhhh. calm down. focus. focus.  breathe.  calm..calm.  this is not real.  the room is not moving.  You are not moving.  calm breathe.  – Ah…shot.  It will be better soon. –  Calm…calm…shhh.  AH! oh my gosh….”Stuart”.  “I’m right here babe. I’m not leaving you.”  “I can’t stay awake.  I’m all dopey.  If I fall asleep it gets worse!  I’m so sick.  I’m scared.  It hurts.  My stomach hurts.”  “I’m right here, you are safe.  I’ll try and keep you awake if you want”

This went on for a long while.  I kept dozing off no matter what.  It was horrible.  I would wake up spinning even more!  Then I got VERY sick.  I was going to throw up.  But nothing came up.  I just gagged, and coughed, and mucus from my lungs came up.  I couldn’t take a breath in!  I had this huge gag that felt like vomit was coming up but it was like a HUGE burp came up then I couldn’t breathe.  My lungs hurt. I was having an asthma attack and trying to throw up at the same time! I was so afraid I was going to have to go to the ER because I could not breathe.  Stuart was holding me putting my inhaler in my mouth for me.  I got enough in to breathe again.  (afterward he told he kept watching to make sure I was getting in some air and not having any signs of needing oxygen….but he is also thinking we may need to see about getting oxygen for me at home.)

Finally, it calmed down enough that when I dozed I stayed asleep.  And I slept!   The pain from my hip did not wake me up at all that night.  I was so exhausted.

The next day, was hangover hell.

I felt so bad.  I was trying so hard not to feel like I handled thing badly.  I really freaked out.  I panicked bad.  I couldn’t stay mindful.  I couldn’t accept what was happening to me.  I hated my body, I hated my life, I was afraid I was dying and hoping I’d just hurry up and die at the same time.

This is not what I have been working so hard on.  This is not mindfulness.  But it is.  Mindfulness is a practice.  You can’t beat yourself up if you don’t live up to your expectations all the time.

Mindfulness is not just about making it better. It is about feeling how you are, how things are now, and not being judgmental about it.  It is about being gentle with yourself.  On Saturday night, I could not accept my condition.  I could not handle my situation without panicking.   That was the way it was.  I could feel every nerve in my body screaming that it wanted this to end.  I couldn’t accept that this was just the was it was…I fought it.   But I was there with it.   I had a hard time looking back at it non-judgmentally.   But now I can.  I can look back and say, I had a damn hard night.  I handled it the best I could.  Things happened that have never happened before, and it really scared me.  Who knows, I may have handled it better than I would have in the past, because of my mindfulness practice?  I’m okay with how I handled it.  At first I was sad about it.  I felt like I failed myself.  I didn’t.   Mindfulness is hard.   Living mindfully is not easy.  But it does making living your life easier.  Or at least it has mine.

So I’m off to being more accepting of how my life is, even when it’s that bad.  It’s my life.  It’s much easier on me when I accept that.  If I try to fight it, it makes it worse.  It really is better when I accept that I have my illnesses, and I have the symptoms, and all the things that they cause.   I have found that I can deal with those symptoms better when I stop fighting them so hard.  I feel better.  I cope better.  Heck, the symptoms have been easier.

I’m just saying how I feel about all of this, I’m feel I’m just testifying..haha.  I’ll write a more coherent post about this sometime.  With references.  Or maybe I’ll find a guest writer.  Who knows.  For now, we’ll just see how it goes with me….hope that’s alright with all of you.

On Sunday, I decided I couldn’t stand the pain and the constant Meniere’s attacks any longer.  They use steroids to break both cycles.  However, too high of a dose of steroids can really mess you up with Meniere’s and make you have worse attacks.  So I started on the dose that the urgent care doctor gave me and put a call in to my otologist at Duke on Monday.  Unfortunately, it was phone tag for a few days, and then he wasn’t comfortable messing with this prescription.  I do not think he understood the situation!!  I am so beside myself right now!  I mean right now, I just found out about this.  I am looking at these pills trying my best to figure out the best way to ramp down off of them without it being too drastic.  Going from 4 on one day to 2 on the next is not a good idea.  So I take out the prescription bottle and count how many I have left.  10.  Wait, I should have more than that to meet the original prescription.  I count again.  10.  STRESS!  I filled this prescription weeks ago.  Will the pharmacy really believe they shorted me?

Thankfully, yes they did.  I got 6 more pills.  I can do this.  Breathe.  Take the day as it comes, and accept it.  That’s all I can do.  So….I sit down and think.  I will figure out how to ramp down the steroids that is between the prescription the urgent care doctor gave me and the prescription my ear doctor gave me before.  I’m sure I’ll be fine.  It’s not quite such a severe drop between going down.  Should I be messing with my prescription?  Heck I don’t know!  But I feel better, with this regimen.  I’m too afraid to ramp down so fast.

For those of you who have been reading for a while….remember the Walmart incident?  That happened because a doctor put me on a high dose of steroids that ramped down too fast.
Now you once again have a VERY LONG POST.

and I’m too tired to read over it to fix any errors.   I’m being a very bad blogger.  I hope you will forgive me.   I just fell again today….I’m not going to write about that now!  I’ll tell all about my back/hip/leg pain after my doctor’s visit on the 6th!  I’m sorry, but I’m not up to being an editor today.  🙂   My back/hip/leg thing…just isn’t going to get better if I keep falling is it?  Of course, that’s why I’m falling!!   I can handle it…..one moment at a time.  I can handle anything for a moment, after all, isn’t that really all we know we have, this moment?

***rest in peace to my cousin Curtis Winslow.  My childhood memories are full of you.  1958 – October 1, 2014

things change….

On By WendyIn Chronic Illness, Mindfulness13 Comments
Everything Changes - photography by w. holcombe
Everything Changes –
photography by w. holcombe

Trying to hold on to the good days, thinking life will stay that way forever is fruitless.  It will change.  And it has.

My hip flare up, that was just this little thing, that was supposed to calm down after the cortisone injection….has become a complicated mess.

I had my hip injection on September 11th.  We got Kiki that evening.  It was an exciting day.  I expected to be sore that night.  I expected to possibly be sore the next day, but would probably feel better….and continue to get better.  That didn’t happen.

I’m not sure if the shot did anything.  I don’t think so.  However. on the night of September the 12th, I got up and went to the bathroom.  I started to sit on the toilet and lost my footing and fell, hard, onto the seat.  My elbow hit the back of the toilet where I keep a box with things in it and I got a nice little scrape on it.  The big hurt was my hip.  OW!  The pain shot through me, from the top of my buttock, along my side down through my knee….I was in PAIN!   I have been in constant pain in this areas since that night.  The pain ebbs and flows, but never gets better than a 6, and if often hovering around an 8.   I had Stuart give me a  Toradol injection.  This really helped.  Toradol is a nonsteroidal anti-inflammatory drug.  (I can’t take NSAIDs by mouth because they tear up my stomach, but I can have these injections occasionally.)  Since this worked to take most of the pain away I was sure I hadn’t broken anything.  I was also hoping the cortisone shot would kick in and help.  So I waited….

The cortisone didn’t help.  I went back to the doctor on the 18th.  She was disheartened.  She suspects that my pain may be coming from my spine, and maybe also from my hip.  She set up a CT scan with contrast dye, and she wants me to see a spine specialist, and a more specialized hip doctor.  (she is actually a PA in the office, she wants me to see a specific doctor in the practice).  I will have the CT scan on Friday.  (I was originally supposed to have the CT scan today, but I didn’t sleep at all last night and I can’t control the Meniere’s vertigo today, and since I could get in closer to my doctor’s appointment I decided to change the appointment.)  I see the hip specialist on October 1st, and I’m not sure when I see the spine doctor yet, I haven’t heard from their office yet.

How am I handling all of this?  Some days very well.  Some days not well at all.

I have had a hard time not getting really stressed out about this.  I’ve been creating “what if” stories in my head.  My mother started having back problems in her 50’s and it really changed her life.  She died of lung cancer when she was 64, but I’ve never been convinced it really didn’t start in her back.  There are many reasons I believe this, I won’t get into them here.   What if I have to live with this pain forever?…….See the stories I have been spinning in my mind….this is not a good thing.  This is not a mindful thing to do.  It does NOT make things better.  It makes it worse.  The stress builds, and everything spirals out of control.   When I think like this I can feel the depression creeping up over me.  It is oppressive.

Then I try to be more mindful.  Being mindful is hard.  It isn’t something you can just click on with a switch and suddenly you think mindfully all the time…I wish I could, I think I would handle things better.  I’m trying.  First, I am trying hard to stay present.  I cannot change what we are going to find out, but I sure don’t have to make up all these horrible scenarios.  I could have something easily fixable.  If I have something that is more difficult to deal with, I’ll deal with it.  Either way, I don’t have any idea, so stop speculating.  Keep my mind in the present, right here, right now.  That is the least stressful thing I can do.

I also got so stressed because we got this precious little dog, Kiki, to take care of and suddenly I can’t take care of her.  I can’t even feed her.  I can’t take her out.  I can’t care for her at all.  Stuart would not have signed up for this had he known he would have been the sole caregiver for me, Max, and now Kiki.  We would not have adopted Kiki at this time.  Does he regret it?  No.  But would he have done it?  No.   So I have been having that emotion that simply doesn’t help…..guilt.  I have put more work on him, and I feel guilty because I can’t take Kiki on long walks and to the dog park and do things I feel she needs.  I can’t focus time on training her.  I feel guilt.  Ugh!  useless!

Not sure how that is handled in mindfulness, but I know for me, I need to channel that into something constructive I can do.  Haven’t figured all of that out exactly, but I will.  Yes, this is not how I planned for things to go, so I need to change my plans.   I have been playing with Kiki more indoors as much as possible.  She will bring me a toy and I will throw it.  She brings it back and drops it in my hand. (how cute it that?)  I have taught her to sit before I’ll throw it again.  (really, she was already doing that most of the time.)  I will hide it and have her find it. (I think this is a newer thing for her!)  So we are working on some training.  It’s just different from I planned.

Then I go back again to how I feel about my body, and what is happening.  My Meniere’s is acting up big time!  I always tell myself to stop trying to figure out why, it used to drive me crazy, and I would end up blaming myself for my attacks, but this is pretty obvious.  The pain will not allow me to sleep or rest enough.  I can’t relax.  Also, it is Rag Weed season.  I think I’m handling the rag weed pretty good, but I can’t keep up with the exhaustion.  My hearing is going up and down; yesterday if I was blind folded I would have sworn a jet engine was in my living room.  When the noise started I kept asking Stuart, “what is that noise?”  He looked at me funny.  I said, “You don’t hear it do you?”  I realized it was just me…dang.  Then it got louder and louder and louder….and it lasted for over 2 hours at the loudest point.  I’ve never had that happen before.  I’ve had very loud tinnitus, but I’ve never had that it that loud for that long.  It continued to be loud for the whole night but it did dial down a bit.

I hate to say it but, I’m just one big vertigo attack.  I try to control them but that is exhausting too.  Most of the time I’m spinning at least a little bit.  I have been able to control it enough that I haven’t had full-blown… spinning so out of control that I can’t see what is in front of me… vertigo, but this constant boat feeling and everything waving is driving me crazy!   I keep focusing on my breath…grateful I am still breathing.  Then I laugh…they say breathe, take a deep breath..ect.  It’s not like we are going to stop breathing.  It is something we do.  Do you ever really focus on your breath?  Really think about it?  If you have ever gotten choked and couldn’t breathe I’m sure you did then, but normally we just take it for granted, like we do our heartbeat, and how our brain works, or the fact that we blink…ect.   So,right now suddenly I’m thinking about my breath, not just the in and out, but the actual breath.  How it works.  I have pulmonary problems so I don’t take my breathing for granted all the time, and I know a lot about how my lungs work….so I think about it, and really I’m thinking about how the oxygen goes through my body, how it nourishes my whole body, how my breath goes through all of me, down through my toes even.  and suddenly I just realized….just now as I am writing this that I have calmed down and feel more in tuned to this body and it is just fine.  It is working pretty darn good.  It’s my body.  I like it.  I love me.  I’m at peace with it.  I accept it the way it is.

Now that is mindfulness.  That is what paying attention to your breath is supposed to be…..wow.  I feel better, right now.   I know this isn’t easy.  I’ll be working on being mindful forever.

 

 

 

 

 

I’m a Spinning Hipster

On By WendyIn Chronic Illness, Hip pain, Meniere's Disease6 Comments

It is a challenge to always be aware of what is happening right now, without wishing it were different.  However, that is the basis of mindfulness, and it does help when you live a life full of chronic illness and pain.  Sometimes I just can’t do it, sometimes I wish things were different.  It’s not that bad right now.  Yes, I’ve wished it were different at times, but I haven’t been too worried about it.  I know things will change, and I one very big thing I have learned, even when I can’t be mindful enough to be aware of what is happening in my life right now, without wishing it were different, I can be non-judgmental of myself.  That’s a big thing for me.

Traveling back and forth between Charlotte and Durham over and over again during this move has worn my body a little bit.  My hip left started to protest a little over a month ago.  We came back from Durham and I wasn’t walking very well.  I rested it and after about a week and a half I it was acting more normal.  Then we went back to Durham.  When we got back, I was much worse.  This time it didn’t settle down.

hip x-ray courtesy of http://www.orthop.washington.edu
hip x-ray
courtesy of http://www.orthop.washington.edu

I ended up going to the orthopedic urgent care on the evening of August 29th, yes they have a special urgent care here just for hip and knee orthopedic, isn’t that amazing?  I was shocked at how wonderful this place was.  I didn’t have to wait long.  They didn’t rush me in and out, the doctor took his time with me, they all worked hard to make sure I understood what was being said after they learned I was hearing challenged.  (nice way of saying, one of my Cochlear Implants was broken so I was really not hearing much of anything!)   The x-rays showed that everything looks good.  He thinks the labrum is catching, but really we aren’t exactly sure.  I’ve had trouble with the other hip too.  Could just be in my genes.  My father has trouble with his hips (well he had trouble, now he has new hips) and my aunt has trouble with her hips.  It could be arthritis starting, just not to the point of showing up on an x-ray yet, or I’m just wearing out.   The doctor wanted to give me steroids to get the inflammation to go down.  He said when inflammation starts it is very hard to get it to stop, it just kind of get out of control.  I explained to him that I am very afraid to take steroids because they often cause me to have severe vertigo attacks.  He respected that and said he didn’t blame me.  He suggested getting a shot in the joint.  I agreed.  Then we realized the holiday was coming up.  I was in a lot of pain and told him to write the prescription for a very low dose of steroids and I would take them.  We filled them on the way home and then I chickened out.  I couldn’t do it.  I’d rather hurt, a lot.

I had a follow-up appointment scheduled for Tuesday afternoon.  I was awakened on Tuesday morning by a Meniere’s attack.  Full blown vertigo!  There is no way for me to prepare for that, couldn’t center myself and get calm, all I could do was grab the trash can!  I was totally unprepared!  Stuart had just left for work.  My phone was across the room being charged, this is strange, I normally charge it on my night stand, for some reason I plugged up across the room.  My emergency kit was in the living room.  I was really unprepared.  I started to panic.  Then I stopped.  I took a deep breath and said, “NO”. “Calm Down”  “Feel the Night Stand under my hand, it is not moving.  I’m not moving.  Look at the bottle on the night stand.  It is not moving.  Focus.  Calm Down. You are safe.”  It was very hard because I was SO HOT!  I had no way to cool down.  That was making me very sick.  I did get in a Valium and Phenergan. I was calming down but the heat was still making me sick.  I started to control the spinning but was still throwing up because of the heat.  I was able to lunge for the phone and text Stuart…”vertigo help”  all of this had happened so fast.  He had just parked at work and gotten out of the car, he turned around and got back in the car and came home.  (I found out it did take him longer to get to work that day because he stopped to get gas, so it didn’t happen as fast as I thought.)  He came home and got me an ice pack and cooled me down.  Then I could really make peace with everything.   I did a good job handling things.   I will say, I did want things to be different.  I’m not that great at that part of mindfulness all the time yet.  In that instance, if nothing else, I wanted me to be more prepared.  I haven’t had anything like that happen in so long, I got lazy.   I can accept the fact it happened.  It is the nature of the beast.  It happens.  I was very upset that I was not prepared.

stop worrying
image at http://sharifahnorhamidah.blogspot.com

Then I started to worry.  What if I am on my way to feeling bad again.  I had a reprieve of a little over 4 months before, and it all feel apart.  What if…..   What if….   My mind grabbed a hold of that and it kept going back to it.  I would think I needed to stop thinking about the future I can’t control it, but I wasn’t really able to stop my mind from going there.  Finally I was able to let it go.  No I don’t want to end up getting that sick again, but if I do, it’s not the end of the world.  I will make the most of it.  I learned a lot, heck, if it happens again, I think I could handle it a lot better this time.  I can’t control what happens.  I’m not going to worry about it.  I’m not going to think about it.  I’m staying right here in the now.  I’m living in this day, and I like it.

My appointment with the hip orthopedist was rescheduled for September 4th.  I still felt a bit hung over from my attack on Tuesday and my hearing sounded a bit off, but I was able to make the appointment, no problem.  I saw a different doctor.  She was also very nice.  The entire office is very understanding about my hearing, and try very hard to remember to look at me when they speak.  (I did have both my Cochlear Implants in working order at this time, but it is still always a challenge.)  My doctor forgot a couple of times and I gently reminded her that I need for her to look at me, she was so apologetic, you could tell she was trying so very hard.  She is just so used to speaking to both people in the room, and also speaking when she takes notes.  She was a lovely woman who explained things very well, and gave a thorough exam, that HURT! haha  She agreed with everything the doctor said in Urgent Care.  I will be getting a shot on the 11th. I will go back to see her about 4 weeks after that.  She told me to take notice how I felt when I got the shot, if I felt better immediately, when it started to hurt again, if I felt better later….ect..  This is a good diagnostic tool telling them more about what might be wrong, and we will discuss it more when I see her again.

Right now, my hip hurts, but I’ll be getting a shot soon.  I’m feeling happy I’m alive to feel it all, and just be.  I’m grateful I handled the attack as well as I did even though I wasn’t prepared.  I’m grateful my hubby has a flexible job and was able to come home and work from home that day and watch over me….and take the time needed to take me to the doctor.  I’m grateful there is a special urgent care for hip and knee orthopedic needs.   I’m grateful I had such great doctors at both of my visits, the urgent care doctor and the doctor at my follow-up visit.

I have much to be grateful for during all of this.  I will admit there are a lot of challenges.  I am not able to do much without pain, so I can’t do things around the house.  Stuart is once again having to do most everything.  This is taking its toll on my poor husband.  I can see it wearing on him.  There is still so much to take care of with the house in Durham.  So many things to just do.  It doesn’t help to worry about it.  We can’t change things by worrying.  What has happened, happened.  We can make plans for the future, but we can’t get too wrapped up in them.

Something we’ve had to learn because of my illness, don’t fret if something happens to mess your plans all up.  Change your plans as the day changes.  Go with the flow, it’s much easier to float with the current than to fight up-stream.  So when things happen to completely go against your plans, change your plans.  I sound like a broken record, but this is one of the hardest things for people to understand.  Not just chronically ill people, everyone can learn from this.  People get really stressed out when things don’t go as planned.  This goes for what we expect of others too.  Perhaps we should talk more about this at another time….this post is getting a bit long.

Life is a series of natural and spontaneous changes. Don’t resist them – that only creates sorrow.

Let reality be reality. Let things flow naturally forward in whatever way they like.    ~Lao-Tzu

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…..

Feeling Better – Part 2 (Diet)

On By WendyIn Chronic Illness9 Comments
"The Perfect Diet" by Fatal Potato deviantARt.com
“The Perfect Diet” by Fatal Potato deviantARt.com

I’ve started this post at least 4 times….how to explain my diet and why it has changed without telling you my whole history with food and health.

Let’s try to put it in a as few words as possible.  Years ago I had a lot of pain and health issues including Gastrointestinal (GI) issues that no one could really explain.  They gave me lots of labels and none really fit.  Eventually I found out I was “slightly” allergic to wheat, so I quit eating it.  I felt better.  I decided to stop eating gluten all together.  For many reasons.  That’s not what this post is about though…so to make this shorter I’ll leave that there.

I also have migraines, gastritis and irritable bladder…all of these require me to be picky about certain things I eat.  For instance, I can’t have caffeine, red wine, I have to be careful about chemicals in foods, acidic and spicy foods….all kinds of things.  Even my beloved dark chocolate can cause me trouble.  (I am allowed small amounts.  So I savor it.)

What else do you ask?  I have Meniere’s disease as you all know.  With that comes a low salt diet.  I also have Irritable Bowel Syndrome.  And last but certainly not least, I have Fructose Malabsorption. I was going to try to explain this here, but again….trying to make it as short as possible, so I found that Wikipedia really did a good job explaining this, so just click on the word and it will take you there and you can read all about it.  After being diagnosed with Fructose Malabsorption I had to really change my diet, it was hard.  I was put on a diet called low FODMAPs.

blog.katescarlata.com
blog.katescarlata.com

I love the description of FODMAPs Kate Scarlata gives on her blog.  Check it out.  FODMAPs Basics.

Here is the list of foods I was given, what I could eat, what I couldn’t eat, how much of this and that…..I never got this right and found out some of it I still couldn’t eat.

FODMAPs Checklist

So why did I still need to change?  As I said…I couldn’t get it right!  I’ve been following Kate Scarlata’s blog for a long time.  She is a Registered Dietitian and a huge advocate and authority on the low FODMAP diet.  She knows her stuff.  So when she worked on a book, a diet book no less, that was based on low FODMAPs I was intrigued.  I wondered, why a diet book.  But I looked at it and found, this will help me.  This book could help a lot of people.

www.21daytummy.com
http://www.21daytummy.com

Kate says, “21 Day Tummy is a plan designed for the person with digestive symptoms that also needs to lose weight BUT if you want to just enjoy the amazing recipes and learn more about gut bacteria, inflammation, belly fat and how that all connects to your health…I think it’s a great read with excellent science for just about everyone!” and I agree.

This book starts off with a very scaled down version of the low FODMAP diet.  It has now grains in the first 5 days.  It does have potatoes.  You have a Belly Blaster Smoothie for Breakfast every day for a while.  I thought this would be torture for me, I have always been a big breakfast person, but even after I was able to start eating other things for breakfast I have stuck with my smoothies.  If I eat a “real” breakfast, I normally have a smoothie for lunch.  I really like them.  They are good, and like a meal in a glass.  I have one and I’m not hungry for hours!  I do mean HOURS!  It’s funny, I turned to Stuart the other night and said, “How come I can have a smoothie for breakfast and not be hungry for hours and have a full dinner and be hungry in less than 2 hours?”  He said, “Me too!”  Funny huh?

So I have used this diet as an elimination diet.  It has fewer foods than the low FODMAPs main list to start.  It has great recipes!  Everyone knows how tight we have been on money, so I checked this book out of the library 3 times!  Then I got a $50 Amazon gift card for my birthday and finally bought it.  I also bought the cookbook.  We’ve been cooking exclusively out of these books since the beginning of June.  However, we have eaten out a few times.  Try moving like we have and not eat out a few times.  But I have stayed pretty true to the diet.

How has it worked?  Wow!  I have more energy than I have in so very, very long.  My tummy is flatter than I’ve seen it in years.  I lost 5 inches in my stomach the first week.  When I eat something that doesn’t agree with me I can bloat so much that I will suddenly gain 6-10 inches in my waist, I have measured it.  It is so painful!  This has stopped.  I accidentally got something the other night and was shocked.

I’ve lost 26 lbs since the beginning of June, most of that in June.  When I started the diet it started coming off very fast, I’m glad it slowed down, I was getting saggy skin.  My body couldn’t keep up with the rapid weight loss.  It is still coming off, slow and steady.  However, I have lost my “food baby”.  Yes that’s what we used to call my tummy.  Almost every time I ate, I would suddenly look pregnant.  I don’t look that way any more.  I still have weight to lose, but my digestion is so much better, and I just feel better.

I had a physical in June, just a few weeks after starting this diet.  My triglycerides where in range!  They were lower than they have been in 20 years!  Yes 20 years!  I have weighed much less and been much more physically fit in those years.  My doctor was thrilled.  My bad cholesterol was a tiny bit high, but just a very tiny bit.  Every thing looked really, really good.

Is my diet the catalyst to making me feel sooooo much better.  Where my gut is concerned, YES.  Has it helped my fatigue, I would say Yes!  Does it make me feel good, Yes.  When your stomach doesn’t hurt and you aren’t worried about passing gas or running to the bathroom, or if your pants are going to fit after you eat…you feel better.  Plus, I’m in smaller clothes.  How cool is that?  But really, that’s just the icing on the cake.  My tummy doesn’t hurt any more.  I am having regular poos.  I know that what I’m going to eat isn’t going to hurt me.  And I love my smoothies. haha  Getting some of my figure back is nice, and yes, it is giving me some sexy confidence back.  So that is pretty darn special.

Is it helping my headaches?  Maybe.  Is it helping my dizziness?  Maybe.  There are too many other factors going on at the same time to be able to tell, if the diet has helped  This is not a diet for Meniere’s or Migraines, but I think everything is interconnected, so I’m sure everything I do affects all of me.

I know you are all wondering….what exactly are you eating?

are you really wondering that?   I could give you a list of the foods, but without the book to explain things to you, and tell you why certain foods are good for your tummy and why other foods are bad for your tummy….I don’t think it would help that much.  I know having the list of foods given to me didn’t help me much at all.  But the book really helped.  Remember, I just checked it out of the library….3 times….before I bought it.  If you, or someone you love, have any tummy troubles, I think it’s worth checking out.

The low FODMAP diet is the diet for people with Fructose Malabsorption, no doubt about it.  However, it is also becoming the main diet to treat those with IBS.  They are finding that it is also helping those with many other intestinal disorders: IBD…Crohn’s, Colitis….ect.  Oh…many people were also raving about having their acid reflux go away.  Unfortunately mine didn’t, but as I said, I have gastritis.  I need to have another endoscope, that part of my tummy issues didn’t go away.  Drat.

The low FODMAP diet is ideally supposed to be followed for 2-6 weeks under the guidance of a registered dietitian or nutitionist, and at that time they will advise you how to introduce foods back into your diet to recognize your personal triggers.  This is often hard because there are so few dietitians or nutritionist who are well versed in the low FODMAP diet.  Luckily, this is changing as the diet is becoming more understood and well known in this country.  The 21-Day Tummy book does have guidelines in the back to help you reintroduce foods to see what may be your personal triggers.

I haven’t been willing to try to add new foods into my diet yet due to all the stress of moving, I will start adding in new foods soon and will hopefully finalize my diet in the near future.

So now you know a little bit more about my diet.  If you have questions, feel free to ask.

Next part 3 in the Feeling Better series….Mindfulness Based Stress Reduction.

Let’s Talk About Me Feeling Better…..Part 1

On By WendyIn Chronic Illness13 Comments

 

Freedom by w.holcombe
Freedom
by w.holcombe

First, I want to say, I’m not cured of anything.  Nothing is gone completely.  I still have all my Meniere’s, and it’s symptoms.  I’m still deaf, with cochlear implants.  I still have Migraines.  I still have Cluster Headaches.  I’m still Bipolar. I still have Fructose Malabsorption.  I still have all of my chronic illnesses.  I am still disabled  I just don’t have some of the symptoms as severe as I did 3 months ago.  Truthfully, I am living a life that I didn’t think was imaginable 3 months ago, and in this series I’ll talk about some of the reasons I now think it is possible.

There have been a number of things that have contributed to me feeling better and I think it’s time that I laid them all out there for you.  I haven’t revealed everything before for a couple of reasons.  One, I was afraid it was temporary and I still am, 3 months is still a relatively short amount of time to tell if these things are going to continue to work, and two, one of the things is something that could be dangerous (and really may stop working at any time)….let me explain.

I will explain the dangerous one first.  This I wasn’t even sure I was going to talk about…but I think I should.

Remember how bad my headaches had gotten?  The migraines wouldn’t go away, after the Botox had been working so well and suddenly it stopped working?  I went for about 3 months of non-stop migraines.  It was horrible!!  I was put on steroids and had that severe vertigo attack and then was put on a different steroid to try to stop it….remember all that mess?  Then I started getting cluster headaches.  Remember?  If you are a new reader you won’t remember that, but it happened…and then…

by w. holcombe
by w. holcombe

One night I had a bad set of cluster headaches and didn’t wake up the next day until 2:30pm.  I woke up and my first thought was “OH NO! I haven’t taken my Diamox!”   Diamox is the medication I take to control the Idiopathic Intracranial Hypertension (high cerebral spinal fluid pressure ).  Without this medication I normally have an excruciating headache!  However, I suddenly realized, I didn’t have a headache.  For the first time in months, I didn’t have a headache.  Note: NORMALLY, when I don’t take this medication, I would be screaming from the pain in my head.  This day I did not have a headache.

I decided not to take it and see what happened.  No headache.  The next day.  No headache.  Days later, No headache.

Please forgive me for not telling you, but the reason I didn’t mention this before is because going off your medication without your doctor’s supervision can be very dangerous.  I should have called my doctor when I decided to stop taking the medication.  This could have been a medication that I needed to be go off slowly.  I could have harmed myself.  If you feel you are taking a medication you feel you need to come off of, please discuss this with your doctor before you stop taking it.  Do this under your doctor’s supervision.  I did not do this like I did. I was irresponsible.

I soon had an appointment with my neurologist, otherwise known as on here as my headache pain specialist, and I discussed this with her.  Luckily, I didn’t cause harm to myself, but she did say I should have called her and told her what I was doing, just in case.  The drug I was on is not one to play around with.  We aren’t exactly sure what happened.  It was evident that I needed the drug when I was put on it, I had a lumbar puncture to prove it and when I went on it I felt much better.  As I said earlier, normally if I didn’t take it I would have had a very bad headache.  We thought it would be silly to put me through another lumbar puncture just to prove I no longer needed it, as that was pretty evident.  The hypothesis is that somehow my pressure spiked, (perhaps I was lax in taking my medication…I’ve been known to do that before, especially if I have a vertigo attack, I can’t keep medication down, or I fall asleep from exhaustion and don’t take it….) and I had may have had a “blowout” causing my spinal fluid to drop.  I used to have that happen before, but the leaks would heal, the pressure would build back up and the whole thing would happen over again.  That’s why I was put on the medication, to try to stop that cycle.  This time the blowout may have cause a leak that didn’t heal, essentially causing my own “shunt” but without the surgery.  So now I don’t have to be on the medication.  Crazy, but that’s all we can think of???  Or maybe my body just regulated its self?  It doesn’t really matter, I now feel better without the medication.

This is probably the main reason my headaches are so much better.  Again, I still have headaches, both migraines and clusters.  The migraines are just much better than they were.  I can’t say that about the clusters because they didn’t start until right before this happened.  I don’t have a lot of these so far.  I’ve had more than I’d like, and I hope they don’t increase.

This could also have helped some of the vertigo, but I don’t know.  The only time my pressure changes really cause vertigo problems I have very severe vertigo attacks.  I have not been having the horrible vertigo attacks, the kind that where I spin for hours and lose all bodily functions, but I haven’t had those in a while.  I have been working hard to control those attacks.  That’s part of another thing I’ve changed…something I started changing before the whole medication things happened…but I wanted to tell you about this first.   So, to tell the truth, I really don’t know if this has helped the Meniere’s symptoms or not.  Mainly, I think it helped the horrible headaches.

Now there is a chance that eventually this leak may heal and my CSF pressure will once again build back up and I will have to go back on this medication.  I sincerely hope this is not the case.  The medication that is used for this, is not a friendly drug.  I hated it.  Side effects…ugh.  Again, another reason why I didn’t mention this, I knew there was a very real possibility that it would be a short lasting “fix”.  Now after 3 months, I’m a little more optimistic.

There are TWO other major things I changed that I believe have caused major life/health transformations.

One of is my Diet.   (This will be Part 2 of the Feeling Better Series)

One of is studying Mindfulness Based Stress Reduction…this is the best thing I’ve ever done for myself!  (This will be Part 3 of the Feeling Better Series)

 

 

 

 

 

 

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?

Living in This Moment

On By WendyIn Chronic Illness, Meniere's Disease5 Comments
drawing by w. holcombe
drawing by w. holcombe

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

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

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

In the very harshest moments, the fear takes over.

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

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

BREATHE

IN

OUT

BREATHE

ahhhh, just a little.

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

Stay in this moment.

Do not think about the next moment.

Stay here…right here.  In the NOW.

 

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

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

It is the MOMENT.

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

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

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

Everything changes.

Each moment is a moment.

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

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

It is the moment I have.

I will live in this MOMENT.

 

 

 

An Expedition – Part 2 “A Look Inside. What did I learn?”

On By WendyIn Chronic Illness, Meniere's Disease8 Comments

 

Courage1
by W. Holcombe

 

After listening to myself, I decided I should stop trying to figure things out when a vertigo attack starts.  It doesn’t help.

 

I can’t stop a vertigo attack.

If I try to figure things out during an attack I’m creating more angst for myself.  This is already an extremely stressful situation, adding to it does not help.  The best thing I can do for me during an attack is to try to stay as calm as possible, and ride it out.   Stay safe and take care of me.

It is now a week later, I’ve had time to look back, and think about things:

  • I noticed I was feeling antsy, anxious, even a bit manic.
  • I literally had the feeling of shaking inside. A physical reaction.
  • When I started out to get in the car I lost my footing and felt unsteady.
  • At the store I noticed the noise was too loud.
  • We planned to go for a short trip, but once we got there I decided to stay longer.
  • I had to stop more than once because I needed to get focused.  (I needed to focus my eyes on something still.)
  • I was irritable.
  • People were annoying me.
  • When I couldn’t hear Stuart I got annoyed.
  • The irritability got worse as my focus got worse.
  • When we were in the can goods aisle I noticed that I felt things may be moving.   *** It wasn’t until this step that I really noticed that I was having to refocus on things and that I was feeling annoyed and irritated.  

That’s a lot of things I could have picked up on.  Or is it?

For the past, almost year now, I’ve had a very hard time leaving the house for anything other than doctor’s appointments.  Yes, I’m a bit agoraphobic.  I think it’s understandable.  There’s a real possibility that when I go out I will have a vertigo attack, an asthma attack, lose my balance and fall, ect….   I feel safe at home.   This doesn’t mean I don’t go out.  It means I’m afraid when I do.  Sometimes, the fear wins, and I stay home.   Yes, that’s alright with me.   I’m still able to do go out and do something enjoyable now and then.  I work on it, but I still don’t want to take a lot of unnecessary risks.

Because of this fear, this sometimes paralyzing fear, I did not sit back and really analyze the anxiety I was feeling before we left, or the anxiety I was feeling in the store.  I was proud of myself for going!  I was proud that I got out of the car and went in the store!  I was proud of myself for feeling like I didn’t have to run from the store screaming!   So, not picking up on the anxiety being anything more than “normal”….understandable.

So I ask again.  What did I learn?

First, I did learn I need to think before I leave.  Listen to my body!

Is this feeling because of my fear of leaving or something else?

This time, it was mostly due to the fact that I had been put on a course of steroids and I was having a reaction I had not had before.  Yep.  I’ve heard many people tell me you can have these symptoms while on steroids, I simply haven’t had them before.  However, I was on a short pack of high dose steroids to break a month-long migraine.  It worked on the migraine.  That’s also why I was feeling a bit “manic”, and physically jumpy inside.   The physical jumpy feeling should have been a big clue.

Second, I learned that I do not do Big Box stores well.

Even if I had not been taking steroids, I was not focusing well in the store.  The tall aisles, with the repeating merchandise…..over and over….  The way the noise travels in the store….all of this, simply, is not good for me.  I learned this is a trigger for me.

Would it have helped to understand this during the attack?  NO!

Will this knowledge prevent future attacks?  Maybe

A person who has Meniere’s Disease is at the mercy of a vertigo attack.  A vertigo attack cannot be predicted.  It simply can’t.   Sometimes we have little clues that it may be starting, sometimes we don’t, but never can we predict it.   Nor can we stop it.   It is not our fault if it happens.  No matter what we do.  We can avoid our triggers to try to decrease the attacks.  We can take care of ourselves to try to make it easier to handle.  But we must remember we cannot blame ourselves.

I can never be in control.