Category: Chronic Illness

I need to admit it, I’m having a hard time.

On By WendyIn Chronic Illness12 Comments

Ahhhh!!!  I wrote more on this post, I revised it, I saved it, I really did.  I wrote more on it last night, and saved it.  I opened it this morning and wrote more, I revised….I just tried to put in a photo and finish it up….error.   Really?  So I thought, I’ll save it and then try again.  It asked, “are you sure you want to do this?”  I knew it was too late then….all my work today was gone.   Oh but wait, a lot I added last night was gone too!  All my revisions.  What the???

I can’t do it again.   So all the revisions, all the changes, you aren’t going to get.  Because now I have a migraine.  I really want to post this today.   The parts that say today in here, are really yesterday….that was fixed in the revision, but Oh well!  This is what you get today.  I was feeling better today after voicing a lot of this, so today it was changed to be a bit more positive….you wont’ see that.   WordPress is not being kind, and I’m going to live in this moment and not deal with it. haha

So….here you go….the post that is kind of what I wanted to write.

Wendy charcoal

I haven’t written much about how I’m really doing.  About how some things have been getting to me a bit.  I’m trying hard to keep mindful and stay diligent with my mindfulness practice, but I have to admit, I’m not far enough along in my mindfulness studies and practices to counteract my feelings right now.

When we first moved to Charlotte, I was feeling so much better!  I was able to do things around the house, to take walks, to well….do things!   I could hear.  I was thrilled the last time I went to Durham I had a long conversation with my old neighbor and not once did I have to ask her to repeat herself.  Not once!  That was amazing!!  That has drastically changed.

Right now I can’t walk very far at all.  I can’t walk at all without pain.

I still haven’t been able to start physical therapy.  It’s mostly my fault…bad decision in the beginning, I thought I should wait until I saw the hip doctor to make sure he didn’t want to add things to the PT orders, or something, heck I don’t know, it seemed like a smart thing at the time.  That delayed things almost a week, then we called to set up an appointment, it was a week out!  So that is 2 weeks I wasted.  So my first appointment was supposed to be today.  I had a cluster headache last night, when I woke up this morning I had no balance and felt like I had a hangover.  There was no way I could go to physical therapy.  I could barely stand up.  So again a delay….until Friday.  *sigh*

My back actually feels better, I don’t have a lot of pain shooting down my leg any more.  My hip still hurts a lot.  But the hip doctor said nothing is wrong with my hip.  He was actually not someone I would want to see again.  He was the type of surgeon who looks at a scan and says, “Your CT scan is basically normal, there is nothing there I can fix.”  and then proceeded to tell me it was therefore all coming from my back and good bye.  Even though I didn’t hurt my back until after my hip pain started!  The back doctor said, yes I have a herniated disc, but I also have hip problems too.  The back specialist was wonderful!  He believes in conservative treatment first, and explained things well, was very knowledgeable.  I would recommend him to anyone!  This hip doctor, was knife happy.  If he didn’t see something he could immediately cut on me to fix, it wasn’t his problem.  No matter how many questions I had.  I told him that I could have gotten that information on the phone, and I was sure that was the quickest visit he had that day.  He said, he loved giving good news.   Ugh!!!

I’m trying hard not spin “what if” stories about the future with the hip/back thing.  I will live in each day.  I WILL!  I will work hard at my physical therapy and get my muscles back in shape, and deal with how it turns out when it happens.   This I will do.  It is just really hard.

Since the Fall weather has begun my ears have started to tell me they are in charge of my life again.  I was having multiple vertigo attacks a day.  Just little ones, I handled them pretty good.  It was exhausting.  It was driving me crazy.  I was trying so hard.   Every afternoon around 4 or 5pm I start having tinnitus that is pretty relentless.  It is hard to deal with.  It can drive you insane to hear this very loud noise every evening for hours.  My hearing sounds like I’m listening through a deep barrel.  This reverberating noise.  It has gotten much worse since I had the very bad Meniere’s attack about 3 weeks ago.  My balance has gotten much worse too.   These things have been exceptionally hard to deal with.  I can’t stand to be in a crowd, heck I can barely stand for Stuart to talk to me in the evenings.   I have been having slow vertigo almost constantly.  If I focus on one thing it moves.  Nothing is ever still.  I always feel like I am slightly moving.  This scares the mess out of me.

So where am I now?

I’m scared.  I’m lonely.   I’m sad.  I’m mad.    And I’m determined to NOT feel like this for long!!!!

This is a time when I have to be careful not to dip into depression.  I have to pay close attention to my bipolar signals.  I have to up my coping mechanisms.  Be sure to get plenty of rest, keep up with my stress, take my meds on time……pay attention to me.  Bipolar can sneak up on you at times like this, even when you’ve been stable for a long time.

Before I was when I was really sick and I was alone because I felt so ill.  Being alone was felt better for me.  I was almost afraid to be around other people.  Now, I don’t feel that bad…I’m not in horrific pain, I’m not throwing up all the time.  I just can’t stand to be around people because I can’t hear them.  I get confused.  Noise drives me crazy.  I can’t go for walks.  I can’t get out in the neighborhood and meet people.  I’m very disappointed right now.

I wanted to do things here.  I wanted to get out and really have a life.

I’ve been stuck on this couch for so long.

am I giving up?

What do you think???

I have an appointment with a new otolaryngologist here coming up soon.  Will he be able to do anything?  Maybe not.  But he will be able to give a new perspective on things.  This is a big clinic here and they are doing some studies on Meniere’s.  I probably won’t qualify for any because I am so advanced, but since they are so interested in the disease means they have some people there that are open to different things.  So who knows?   I will also be getting my Cochlear Implants adjusted.  After I have a major attack I always have to have them adjusted.  They think it’s because when someone with Meniere’s has an attack the area in the cochlea swells, well that is where all the wires are for the cochlear implant, that is how I hear.  They get pressed on and it changes things.  So things have to be adjusted.  This doesn’t happen a lot with people who have Meniere’s who get CI’s because usually when they get to that stage they have stopped having vertigo attacks, or they don’t have them very often.  This has become a pretty routine thing  with me.  So I had to find a CI audiologist close to home.

Even if the new doctor doesn’t help….I will deal with things.  I’m sure we can get my hearing better.  If not, I will deal with it.

That’s what I do.  I accept things, and move on.  That’s life.  and as much as the road as been a bit rocky lately and I have had a hard time dealing with things, I still love my life.  really I do!  I have a lot to be grateful for…I’m just a little overwhelmed at the moment.   Having a little bit of difficulty with “not wanting things to be different”.   I want things to be different.  Right now I want that very much.  If it doesn’t change?   I will adapt.  I will change my expectations.  I will accept.  It will just take me a little bit.

#BAD2014 Blog Action Day 2014 – #Inequality In Mental Health

On By WendyIn Chronic Illness, Mental Health13 Comments

Blog badgeI admit I had not heard of Blog Action Day until yesterday.  I left a comment on fellow blogger Kitt O’Malley’s blog and she told me that it was worthy of a post for this year’s theme Inequality.  Kitt is an amazing mental health advocate, please go and check out her blog.  Kitt O’Malley – Living with Bipolar. Loved by God.

Inequality and Access to Mental Health Care

Sometimes you need help.  You may or may not want it.  You are a risk to yourself or others.  A stay in a psychiatric facility is needed.  The care you receive will vary drastically depending on your financial means.

This is my story…..a 30 something white woman, with not the best insurance, with no savings, and no other financial support….

I was involuntarily committed to a psychiatric facility, I was suicidal. I had called a Suicide Help Line and was talked into coming in to a mental health facility to “talk”.  They wouldn’t let me leave.   I was taken from there to the psychiatric hospital in the back of a police car.  It was scary.  Really I wanted to be committed, I was afraid of what might happen, but officially it was involuntary. My insurance would only pay for inpatient treatment if it was listed as involuntary. However, once I got in, I wasn’t told my rights.

I wasn’t treated badly. I actually had a good stay for the most part. There were no windows my room.  The view from my window in the main room was through a thick metal screen, it was more like a prison. But it was a nice atmosphere for the most part, and it was clean and the people were good and they had really good food!!  It was surprising to me how much the patients were supportive of each other.  There were times when you would hear screaming and there were times when everyone was rushed into their rooms and closed in….but for the most part, it was a quiet and restful stay.  This hospital had separate wards depending on the seriousness of the illnesses.  This is not always the case.

My biggest problem was the psychiatrist they made me see. He made me very uncomfortable. I was a rape victim and he gave me the creeps. He insisted on being in the room alone with me. I complained and complained and I couldn’t get this resolved. He said I had Borderline Personality Disorder and my complaints were part of my disorder.  (I had already been diagnosed as being Bipolar.  This diagnosis was again confirmed by a different psychiatrist.)

My second problem was I was told I needed to stay beyond the time my insurance normally pays and that they had gotten approval from my insurance company for the extended stay.  They didn’t do that.  Since they didn’t get that, my insurance didn’t want to pay for the rest of my stay. Well I had no way to leave. They wouldn’t let me. Plus, I didn’t know they didn’t get approval for the rest of the stay.  I left there with a HUGE bill.

This stay ended up making me almost declare bankruptcy. did it help me mentally? Yes. Mainly because it got me in the system and I was able to continue treatment.

I did end up not having to pay for the psychiatrist outrageous bill he tried to saddle me with because of the complaints I had made against him and the many request to have him removed from my case. I also had most of the bill from the hospital dropped because they didn’t get it authorized, and since I was involuntarily committed I couldn’t be held legally obligated to the papers I signed when I was admitted. I wasn’t of “sound mind”.

However, I lost my job. I couldn’t pay my bills when I got out. I was single and alone. My roommate stole from me when I was in the hospital.  I had no one to help me.  If I hadn’t been so determined to get better, and stay the course, I would easily have stopped taking my medications….I had a hard time affording them. I would have stopped going to therapy and to a psych doc….again it was very had to pay for it.  However, I wanted to be more normal.  A lot of Bipolar people really miss the highs…I did.  I’m an artist, and I will say, I feel I creating has been a lot harder than it was before. But I will not jeopardize my health.

These are trials I had and I was really there because I wanted to be. I didn’t have an advocate. I wish I had. There were a lot of things going on with my case that no one told me about.
If I had not been so eager to want to get better, I don’t know if I could have done it.
The system is so very far from perfect!
I worked so hard. I still work hard at it.
many people who are involuntarily committed won’t be committed to working at it.

Many people who need help and want it won’t even be able to get in a hospital because they don’t have the funds.

No one should feel they have to declare bankruptcy because they need help with their mental health.  My credit was ruined for years after this hospital stay.  I was afraid to answer the phone because of bill collectors.  Yes, I was able to finally get the bills straight with the hospital, but it put me in such financial straits with everything else it followed me for years.   My employer didn’t hold my job for me.  So when I got out of the hospital, I had no job, and a whole lot of bills.  I was still in a very fragile state of mind.  This is not the ideal way to enter back in society after leaving a psychiatric facility.

Can you see the Inequality in the Mental Health Care system?

Can you see how different it would have been for me if I had the financial means to pay for a higher quality facility, and have an advocate help me?

Can you see how different it would have been for me if I had not had the financial means I had?  If I hadn’t had insurance?  I easily could have either have been ignored, or put in a state hospital.  I could have been put in a ward with people who were very dangerous.  I could have gotten lost in the system.  These kind of things happen every day.

What can we do to stop the Inequality in the Mental Health Care System?

The first thing we can do is talk about it.

Talk about it more….and more….perhaps the more we talk about it the more attention we call to it.

The more attention we call to it….the more noise we make about it…they will have to do something about it!

How? What?  I don’t know.  I don’t know how to fix it.  I wish I did.

But I do know this is an inequality that must end!  People cannot continue to suffer because they can’t afford mental health care.

 

To read more on Psychiatric Hospitalization please visit the National Alliance on Mental Illness site.  NAMI

 

 

A time to think of my…Gratitudes.

On By WendyIn Chronic Illness9 Comments

 

gratitude quote

There are days when you have a hard time.  Days when you can’t think of anything but what is going wrong.  It’s on those days that I find it most important to step back and look around me at the things I’m grateful for.

Today is a day I want to really look around and pay attention to what is in front of me, I know I have so much to be grateful for!

  • I’m grateful I woke up today.   What?  You think I’m joking?  I thought I’d start at the beginning of my day, and I thought what is the first think I’m grateful for today?  I’m grateful I’m here.  I’m grateful that I’m alive.  I’m grateful I can breathe.  Oh there is a good one!  Last night I had a very difficult time breathing, I coughed and coughed, and had a hard time taking a deep breath.  I had used my inhaler and it didn’t seem to do anything.  I did a nebulizer treatment, and I could breathe better, but of course I had the shakes for a long time afterward (I really hate that thing, a necessary evil).  Then I started coughing again, and well, it was a not so great breathing night.  Just one of those nights for me.  I did sleep without much coughing, so that is great!  We’re working on getting the chronic bronchitis under control, but haven’t gotten there yet.  I’m not complaining.  Last night was a rougher night than usual, the weather changed….rainy, damp…that makes it worse.  Again, not complaining, just stating the facts.  I accept it as it is, and I am fine with it.  I will be going to a new pulmonologist soon and we will work at getting this more under control.  I am very grateful that I can breathe better today.
  • I’m grateful my husband can walk our new dog every morning, and she is so good about it!  When we first talked about getting another dog Stuart said he didn’t want to have to walk it.  Then we met Kiki, and knew she was the right dog.  I was having hip problems, but thought it was going to be over very soon.  The doctors thought it was just a little inflammation, I was scheduled to get a hip injection and they thought that would be the end of it.  So when we decided to start fostering Kiki, I had planned to be the major caregiver.  Little did we know I would fall the night after my injection causing me to have a herniated disc in my back, and now a month later, I’m still not walking Kiki.  I’m still not walking much at all.  However, Kiki is the best dog about taking walks.  If you are in a hurry, she will go very fast.  She isn’t the kind of dog who will just go out and sniff and sniff just for the sake of it.  If you go out and walk out to the tree and then walk back toward the house, she will go.  No problem.  Often, in the mornings she will run Stuart outside, go real fast, and run back in and go back to bed!  She says….”Bye Dad!  I’m ready to go back to sleep!”  He has even said that he likes taking her for walks!  I’m a little envious.  I’m very grateful they have bonded and the walking issue, never became an issue!
  • I’m very grateful my doctor thinks my herniated disc will heal with just a little physical therapy.  Yep, right now I’m bored out of my mind.  I’m so tired of not being able to do anything. I can’t walk far without pain, I keep waking up because of pain, I can’t sit long without pain, well it just hurts.  I’m so relieved that the spine specialist thinks that I will heal with very conservative treatment!  Yay!!   I’ll happy dance when I can!!
  • I’m grateful I didn’t gain weight while taking steroids.  Oh boy, oh boy can we get happy about this one?!  The steroids made me go out of my mind, I was climbing the walls and wanted to destroy people, but I didn’t gain weight!  I didn’t weigh myself for the past month, it was too hard to try to step on the scales, I finally weighed this past week.  I lost 4 pounds!   For inquiring minds….that is a total of 44 pounds lost so far!! 
  • I’m grateful I understand I can’t trust my emotions right now because of the steroids.  I was actually very proud of myself for my self control and for understanding that it was the steroids that were making me feel so horrible.  They are still nagging at me a bit, I have one more dose, but you know it will take a little while before they are out of my system….so I can’t trust my emotions.  That is a good thing to keep in mind.  It is very difficult for someone who is bipolar to feel this way.  I am always very on top of my emotions, very in tuned to how I’m feeling.  I have to be.  If I start noticing that my feelings are our of sync with how they should be, I need to talk to my doctor.  By this I mean, I need to watch out if  react to something in an inappropriate way.  For instance, the other day, I said to Stuart, “Why don’t you use your damn common sense once in a while?!?”  in reaction to him just asking me a simple question.  This was VERY inappropiate!  I do not talk to him that way, and I couldn’t calm down.  I was sitting there suddenly saying….”I don’t act like this any more!  I don’t feel like this anymore!”   I took some deep breaths, centered myself, and calmed down.  Apologized over and over to my dear husband and explained I couldn’t help it and it would probably happen again.  I was full of anger I couldn’t control and he was probably going to get the brunt of it.  He was a dear sweet love and hugged me and understood.  Yes, he did get it a couple of other times, nothing like that time, and we dealt with it very well because we talked about it and how the medication was affecting me.  I’m so grateful I have a husband that communicates with me and understands about uncontrollable emotions due to steroids.
  • I’m grateful for a small place to live.  I’m grateful for a place to live that is safe.  I’m grateful for a place to live that is peaceful.  I’m grateful for our place.  I have been a little ungrateful for out little place lately, and just now I realized just how very grateful I am for this place.  I really do love this little place in many ways.  I love that it is small.  I am very grateful I do not have to climb stairs right now.  I couldn’t.  It is so much easier for me to get around this little place.  I have been feeling a bit claustrophobic in here lately, and way too isolated.  I know it’s because I just can’t do anything.  My mind wants to do something and my body says NO.  (yeah I’m working on that)  I’m very grateful that of all the places we looked at to rent we found this peaceful little place.  It is quiet here, (yes that is so important to a deaf person…haha).  There is little traffic on the street.  There are more people out walking their dogs in my neighborhood than there their are cars that pass by!  I just think that is so cool!  Yes, as I write this little piece I’m much more grateful about the place I live.
  • I’m grateful Kiki loves her new toy so much!  Yes it is the little things that bring joy into our lives!  Kiki loves her little toy so much!  She has forsaken all of her other toys for the one she picked out at the pet store.  It is a little beaver…I think.  It has a recycled bottle inside so it crunches, and it has a squeaky toy in the tail.  She loves this thing so much!   She carries it around, and gets so excited.  She will chase it, she will play hide and seek with it, she will run and get it and bring it to you just to show it to you…..”Look!  LOOK!  SEE! my toy!!!!”   She takes it to bed with her.  She doesn’t play with it in bed, no she just has to have it with her.   If I’m in a different room she will go check on me then she will go and get her toy and bring it to the door and show it to me….like she is showing the toy where I am??  Then she will leave.   She has so much fun with her toy, and it brings me much joy playing with her with it, and just watching her with this toy!  I will never get tired of watching her play!
  • I’m grateful my husband took me out yesterday for a short trip to the mall and I found a bra that fit – First Try On!!!  don’t really need to follow up on that one….but I will!  I must say, this is the very first time this has happened, and it is amazing to me.  After losing so much weight I went in and completely guessed my size!  I was not up to trying on a lot, this bra was on mega sale and I thought, OK, I’ll try it.  I had on an old bra that was too small, so I adjusted the size from it….and Wow!  I’m still amazed that it fit, and it just looks and feels so great.  No gaps, no pinching, no pulling…..I’m a happy woman!  It was also on such a mega sale I won’t feel bad if  when I lose more weight and soon need a different size!  One thing that is a little different about me losing weight….I have bigger boobs.  I’ve always liked my breast.  I have felt they were just the right size, not too big, not too small…just right.  When I gain weight, they have always stayed pretty much the same.  They didn’t get really big with me.  (a lot of women gain a lot there, I didn’t.)  Yes I’m silly, but just thinking about it, if things keep going as they are I’m going to be a bit bigger.  Right now I’m a cup size bigger than I normally am at this band size.  Stuart likes it.  hahaha  However, I can’t imagine him not liking anything about my body….he is a bit biased.   and I’m very grateful for that!
  • oh there is so much to be grateful for!!   I’m feeling so much better than I was when I started this post!  I’m grateful I have so much to be grateful for...here’s a few more….
  • I’m grateful I got to tell my sister how I was feeling about some things.  It doesn’t matter if things don’t change,  I’m just so grateful that we talked and I know she knows some things now that were stuck in my head and I needed to let it out.  It’s hard to put some things in the past if you don’t know if other people have put it there, or heck, if they even know about it.  Yeah, try to wrap your head around that one.  I just feel better about things.  I’m grateful for that.
  • I’m grateful that I’m emotional.  (no one needs to understand that one.  It just really used to bother me, now, I’m glad.  I like having deep feelings.  It may hurt a lot sometimes, but it is also pretty darn great other times.  Being “emotional” is not a bad thing.)
  • I’m grateful I found this meditation on forgiveness….I needed it…. Forgiveness Meditation    (this is just a written page, not a link to a guided meditation, read if you want.  I liked it a lot.)
  • I’m grateful I have some friends I can reach out to, even if I don’t have any I can see in person.
  • I’m grateful I have clean water.  (I really don’t like the water from our tap here, we have started using bottled water, and I’m so grateful for it.  It really makes me think a lot about people who can’t get clean water at all.  I’m so very grateful that not only do I have running water in my home, but I am able to get wonderfully clean water whenever I want it.
  • I’m grateful I have access to fresh food.  Something else I have thought about a lot lately.  I have talked a lot about the change in my diet, how I’ve lost so much weight and how much healthier I am because of my new eating habits.  I haven’t mentioned some of the other things I’ve noticed that I can only attribute to my diet change.  My hair is thicker.  My fingernails smoother and less brittle.  My skin is clearer.  I can tell you I haven’t changed my hair products, nor have I done anything different to my nails, so I can only attribute those changes to my diet.  I did change my facial wash, but I will admit I don’t use it every day.  I am a self proclaimed foodie.  I love good food.  I love fresh food.  I’m grateful that even though we have had very lean times over the past couple of years, we have always managed to eat as fresh as possible.  We have cut corners every where we could so we could spend a little more on our groceries.   We do still spend wisely in the grocery store, but let’s face it, fresh fruits, veggies, and high quality meats are expensive.   For some people it is a matter of choice, but sometimes it is a matter of not being able to afford food…period.  Can you imagine if you simply could not afford to buy groceries at all?   There are so many people who go to bed hungry every night.  So many people who are malnourished.     My gratefulness about food is huge.  I’m so grateful that I now have the knowledge to be able to nourish my body in a healthy way, and am able to provide it with all the food that it needs.
  • I’m grateful I have this blog to write about things….and I’m very grateful that there are some people out there that read it.   Yep….this is what I needed today.

 

I really do appreciate life so much!

I love my life!

Do I have challenging days?  Yes!

Will I feel bad on days again?  Yes!

Do I accept my life the way it is?  Yes!

Do I wish it were different?  Sometimes….I’m working on a NO for that answer, but I think “Sometimes”  is pretty good.   I still love my life, just as it is, even if nothing changes, even if it gets worse, I still love my life!!

That’s pretty important I think.  I love my life, all the good parts, all the bad parts, all the fun parts, all the hard parts….I love my life!

 

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.

 

 

 

 

 

Our Family Grows

On By WendyIn Chronic Illness11 Comments

On Sunday, September 7th we walked into Pet Supermarket to get Max some cat food and met this little girl:

10635901_10203173624444748_2641088124266372651_nShe was very scared and shy.  She wanted me to pet her, but wasn’t sure.  Then she looked at me and I think she suddenly she realized, I was a good one.  I bent down to her and she came up to my face and gave me the tiniest lick on my nose.  Tears welled in my eyes.  I knew this dog needed me.

Her name is Kiki.  She is about 2 1/2 years old.  She is a Terrier mix.  Looks like she is probably a Rat Terrier, with maybe some Chihuahua in there?  She is a little thing, she weighs about 13 lbs.  One of the first things you will notice about her is that she has a crooked front left leg.  This is part of her sad history.

Kiki has had a rough life so far.  We know she was in an abusive situation, that is where the broken leg came from.  It healed without being tended to.  I can’t imagine the pain she had to have been in.  She then ended up in a shelter where she was adopted by a lady who had 11 dogs.  She was a hoarder.  The dogs were not house trained.  They were not socialized or exercised.  Her neighbor had adopted a cat from the agency that ended up with Kiki, the Tasha, the founder of the agency, tried to talk the lady into letting her find homes for some of the animals but she wouldn’t let her.  The lady was subsequently evicted and that is when the Tasha got Kiki.  She had her for a month trying to get her socialized, at least partially house trained, and just calm before trying to find her a forever home.  Kiki has been with her for about 3 months and has really shown what a wonderful dog she is.

When we first met Kiki she would growl at Stuart sometimes.  Actually, she growled here and there at anyone.  Stuart said she growled at me a couple of times, but I never heard it. (the wonders of being deaf, huh?)  We talked to her Tasha and asked about fostering her for a little while before deciding about adoption, explaining that we weren’t sure if our big old cat would accept a dog in the family.  We did foster a dog for a little while once before and Max did not accept him at all.  However, he was a big dog, and a puppy.  We were hopeful that this situation would be different.  Kiki is smaller than Max, and she has lived with cats before so she is used to them.  Tasha understood and said she was willing to let us foster her for a few weeks before we adopted her.  We took an application with us to talk it over and get things started.

On Thursday of that week, right after I got my hip injection, Kiki arrived at our home.

Kiki’s arrives.

She was not too sure she really wanted to be here at first.   I felt so bad.  She was very attached to Tasha.  Kiki cried and cried when she left her with us.

IMG_20140911_200349

After a few hours she got a bit more settled.  She did play some with me that night, and slept curled up beside me.  It became apparent she was going to bond with me, but it was going to be a little bit harder with Stuart.   So I had him give her treats, and spend more time with her and suddenly I came out to find….

Stuart getting kisses from Kiki!
Stuart getting kisses from Kiki!

They are best buddies now!  She is still wary of him when he has on his work clothes, but she warms up fast as soon as he puts on his every day clothes.  I guess she just doesn’t like a man dressed up!  She used to get very upset when she got crowed.  We live in a small place now, if two people pass in the hall, it is crowded.  Kiki would often growl and cower if we were suddenly over her, she has gotten used to it now.  She is adapting so fast, I’m so very proud of her.

IMG_20140914_185351IMG_20140914_185320In these two pictures you can see how her leg healed when it was broken.  We still have to take her to see a vet to see if she is in pain, or if this will affect her in her later in life, or if there is anything we should do about it?  We know we can’t afford to pay for her to have major reconstructive surgery at this time, but if she needs to have surgery, we can start to save for it now.  She does not act as if it hurts.  She runs and jumps without favoring it.  In the photo it looks as if she is favoring it, but when she walks she puts her weight on it.  It breaks my heart to know someone hurt her like that.  I can only promise her that I will try my best to make sure no one ever hurts her again.

We were asked if we would keep her name.  We thought about it….should we change it?  Truthfully, we wouldn’t have named her Kiki, but she likes it.  She listens to it.  We thought about changing it to Mini, it sounds close so I’m sure she would get used to it.  We thought it would be cute because we have a Max.  But she’s Kiki.  Stuart often calls her Kikster!  He has also called her Yoda because of her ears.  She does have Yoda ears.   A friend said she could have multiple names, Kiki Mini Yoda…now we keep playing around and singing her songs every night adding names on to her.  hahaha  However, she is Kiki.

We knew it was a good sign between Kiki and Max when they didn’t chase each other.  They were a little curious, but mainly stayed out of each others way.   Then on day 3 I was lying in bed reading and Kiki fell asleep on one side of me, and Max came up and went to sleep on the other side.  I was in a pet sandwich!  Wow!  I was amazed! Then yesterday I walked in the living room and saw this:

CIMG3448
Max and Kiki

They had both taken my seat!  Most importantly though, I think they are pretty comfortable with each other!  Every once in a while they will chase each other.  I’m not sure if they are really chasing each other, or playing.  I think they are playing.   When they catch each other, they just stop.  It’s kind of funny.

We haven’t officially adopted Kiki yet.  However, we do plan to.  We just want to have her checked out by the vet first.  I can’t imagine what they could possibly say that would make us not adopt her.  We just feel it would be irresponsible for us to go into this adoption without knowing everything.

For those of you who have followed my blog for a while know how much the loss of my dog Sandy left a huge open hole in my heart.  It has been about 2 1/2 years since she died.  We feel it is a good time for us to add a new member into our pack.  We think Kiki is a good fit.  I also feel Sandy has had a little paw in selecting her.  There have been a few little things that she does that are just so “Sandy”.  Suddenly I can talk about Sandy without crying.  I feel this sadness lifted.  She has not been replaced in any way, I feel she wanted me to help another dog the way I helped her.  I feel like I’m fulfilling a promise, and her memory is living on in this new little furry baby.

Sandy
Sandy

This has been a very joyful time and a very hard time for me.  People who are going to adopt a pet have many things to consider.  Chronically ill people have many more things to consider.   This is a huge responsibility.   I have been doing so much better recently I thought I could take care of Kiki mostly on my own.   I was writing stories of the future.  Just as worrying does no good because we can’t do anything about the future, expecting the future to be as the same as it is today is also fruitless.  Everything changes.  We have to remember, we can’t predict the future.  When things hit us from out of the blue, we have to make room for it and adjust.

I’ll explain in my next post.    …..teaser……my hip condition is complicated so, I suddenly have a dog and can’t walk her, at least not right now………

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…..

Not my America

On By WendyIn Chronic Illness7 Comments

This young lady has great courage to voice these opinions! I applaud her and agree with her! Welfare is not a dirty word. Not everyone on welfare is abusing he system. Most people on welfare do not want to be. People in need should not feel totally exposed and violated simply because they are forced to ask for some help.

Amanda's avatarMeniere's Warrior

This is not the America I learned about in school.  

I try not to delve into politics too often because, quite frankly I don’t understand where the compassion has gone.  

When it comes to social services the status quo is to treat people like criminals.  Welfare has become a dirty word.  It always equates to fat, lazy criminals who suckle off the tits of the government.  I frequently have debates with people who believe that more people on Welfare take advantage of it than those that don’t.  I simply don’t believe that.  Sure, there are scumbags everywhere.  There are people who take advantage of systems in this country.  The mainstream media floods our news hour with nothing but horror stories of people taking advantage.  What we don’t see is the real faces of welfare.  We never hear about the majority of people who need short-term, emergency aid.  

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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.