Author: Wendy

I'm taking a journey learning to live a mindful and happy life, while living with Chronic Illnesses. I'm a bit of an idealist. I want everyone to be happy and think everyone should want the same for others. I don’t understand mean people. I cry easily and laugh often. I love cartoons, Dr. Who, and my wonderful husband...not in that order!

It’s just so hard sometimes…

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

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

photo by w holcome
photo by w holcome

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’m simply not dealing well.

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

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

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

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

I did it Alone. Spinning another day…

On By WendyIn Meniere's Disease4 Comments

At a little after 6am Stuart was leaving for work and I woke up and decided to eat a little something and take my first steroid of the day.

I woke at 8am with my stomach hurting…ugh, steroids.  Then I thought,  “Oh good, it is better today, knock on wood”…and I really did!  I took an antacid for my stomach and went back to sleep.

I woke up at 10am with horrible heartburn and spinning.  sometimes you just want to cuss!

I thought, ok….slow.  I can handle slow.  I hope.  I took meds and slowly, very slowly started to get up.  Ah…let’s just lie here for a minute.

Try again….slow.  VERY SLOW….  I feel like I’m walking on a merry-go-round, and it’s on a rocking boat….ugh…my stomach takes a lurch…it’s ok, just stop here for a second.  Grab my walker….oh nice walker, I love you so much.   slowly I get up…I am sure no one has ever seen anyone move so slowly.  Once I am up, well kind of up, I am hunched over the walker with my head leaning to one side, I am doing pretty good.  I start to head to the bathroom.  WAIT…phone!  I grab my phone, just in case.  If I fall, I need to make sure I can get help.  and off to the bathroom.   I DID IT!  I got to the bathroom ALONE!  During vertigo!  it was a very slow spin but I did it!!

I did it 4 times today!!!   I have been slowly spinning all day!!!   If I keep my head exactly still things are pretty still, but if I move, WHOOSH!

This morning I was very proud of myself.  Not only did I get to the bathroom alone, I got in the kitchen, grabbed a banana, a couple of pancakes that were in the fridge and got back to the bedroom…got my CI’s….and things I’d need for the day  (meds and such) and go myself to the couch.  Once I went from the standing position I was in to sitting the vertigo went WILD!  What on earth?  who knows this is the most bizarre thing in the world, no rhyme or reason to me!

So I collapsed and tried to calm down…and hung on!  Whew!

It slowed, and I was ok, but not great by any stretch of the imagination.

It’s about 11am by now.  Stuart had an appointment this morning and texted to check on me.  I told him I was spinning but I handled it, however, if he could stop by on his way back to work and help me get settled it would be great.  So he did….and I sent him on his way!  Even though I was not doing well when he left.  It is now almost 4pm and I have done a good job of handling things today.

I’m proud of me.

I still want to share with you guys just how I got through some of the roughest parts this past month, and everything that went on in my head, and heart.  Things I didn’t want to admit to.  I was ashamed to admit I wasn’t handling things as well as I thought I would.  But I got through it, and learned a lot along the way.   Of course, I’m still going through it….so…we’ll get there.

One thing that really helped me get through all of this…..

So I feel bad about it…feel bad.  That’s OK.  Acknowledge it.  Don’t feel so guilty about it.  I don’t have to feel positive all the time.  My positive go to attitude is still there, but it is perfectly fine to feel bad about this, to feel sad, angry, and well….just bad.   I’m not going to wallow in it, I’m not going to get stuck in it, so I don’t need to beat myself up over it either.  Accept it, and have some self compassion.

Things I should note today….  woke feeling better around 8am.  Woke with vertigo at 10am.  Had rotational vertigo all day, various degrees of spinning speed.  Right side of face/head felt funny. (by this I mean, it feels thick).  Had a migraine.  Took a Maxalt, pain got better, but side of head sensation did not go away.   *could some of the vertigo be migraine related?   Ears feel full, but not as full as they have over the past few weeks.  When I drink I can really feel the coolness in my right ear, it actually feels like water gets in my ear.  there is not water in there if I feel in there, but it feels very strange.  am I just noticing this because I’m hyper aware now?

 

Not the post I planned….

On By WendyIn Chronic Illness, Meniere's Disease6 Comments

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

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

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

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

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

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

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

Now what?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It has taken me all day to write this.

I hope it makes some sense.

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

hope you don’t mind….

I might just need someone to listen.

 

Thanksgiving often forgets those without……

On By WendyIn Chronic Illness, stress12 Comments

THANKFULI love the sentiment behind Thanksgiving.  Take the time to be thankful for what you have.

Then I look around.  Is that really what I see?  There is so much talk of spending time with family and friends and eating and …and…and  Well what is a person to do who has no one, or who has very little?  I have very strained family relations.  I am never invited to any family function.  This can be very hard.  Some years it hurts more than others.  This year I became very melancholy about family, I’m sure it is because I have been so sick and the steroids have been turning up my emotions a bit, but seeing all the stress on how we should be with family and how things “should be” started to make me feel even sadder about it all.  (Don’t worry, all is good with me.)  If that could happen to me imagine what it could do to someone who is really depressed?  Someone who has no one?

I remember those times.  I have spent Thanksgiving and Christmas, alone.  On occasion I was invited to friend’s for dinner, sometimes they were fun, other times they were miserable.  If you reach out to someone and invite them over for a holiday meal, please try to include them in your festivities, not just feed them.  I have never been more miserable than when I went to a holiday meal and felt I was a charity case.  Sitting in a corner alone watching people have fun is worse than sitting alone by yourself knowing people somewhere out there are having fun.   I’m not saying, don’t reach out and invite someone over….please do!  But include them in your festivities.  Do not have family gift exchange in front of someone who is alone for the holidays.  Do not do your yearly family traditional …. whatever….and not include this person.  Do something that includes this person.  Make them feel welcome and special.  Make them feel you are Thankful they are there.  If you have a special family tradition that you cannot include this person in, then invite them to come later, or have the tradition after they leave, or find a way to somehow include them.  Some people may not have a hard time with this kind of thing, but I did. It was torture to see a happy family doing things that a family does knowing my family didn’t want me with them.  That is not to say I was not grateful to everyone who had me over for a holiday meal, I was.  I have been to some homes where I didn’t want to leave I felt so welcome and included.  (little hint, if you have someone over….get them involved.  Treat them the same as you would anyone else.  I loved it when I was put to work, or was told to help with the kids, was taken aside by grandma and told story after story….when I was treated like family, that was the best.)

It’s also that time of year when I see so much food everywhere!  I hear people talking of family and friends and togetherness and FOOD!

I’m amazed at how much food is wasted in this country, yet so many people go hungry.  There is no reason for anyone in this country to go to bed hungry.  There are so many things wrong with this I just don’t know where I would begin to talk about it here.  Not today.

Today I want to just say, when you are planning your Thanksgiving meal, think about the people who don’t have one.  When you go to the grocery store and you see that box that at the entrance where you can donate to the local food bank, please put something in there.  People are using the food bank more and more these days.  The place to go when you are in dire need is overwhelmed with people in need.  Every time you go to the store, please put something in that box.  If you can donate to the food bank, even better, then they can buy fresh food to give out.  This is very important, even when the needy are getting something to eat it is often so far below nutritional standards they are so malnourished they are getting sick and often still starving.  Most of the hungry are children and elderly.  1 in 5 people in the United States are hungry.   When you are wearing your elastic pants this Thanksgiving so you can eat too much, remember there are people who don’t have enough….some who don’t have any.   Remember, they won’t have enough the next day either, so continue to give. Project Sunlight is a great place to get ideas on more ways you can help.  At Feeding America you can find more about hunger in America and you can find your local food bank and see what they are doing in your area.

Remember, after Thanksgiving people will still need food.  We often give more to make sure people have this wonderful meal on this day, but then they go hungry again a few days later.  This year won’t you say thank you for your bounty by sharing a little throughout the year.
no one poor

Now…for a few things I’m very thankful for this year….

  • I cannot say how thankful I am for my husband, without whom I do not know how I would manage to navigate this world.
  • After 15 months without a job, my husband found work.  Not just a job, but one he enjoys!
  • this moment is good.  (it has been quite a ride of ups and downs this past month, the past 2 days have been better…one moment at a time…accept and make the most of it.)
  • I had nearly 5 months of feeling so much better than I thought was possible.
  • for learning more and more about living more mindful
  • for learning to be less judgmental of myself and others.
  • for having a roof over my head, heat when it is cold, food when I am hungry, water when I am thirsty…
  • for feeling safe.
  • for having at least one friend I say anything to and know it will be OK.
  • for a very special email I received the other night that helped more than the sender could ever possibly know.
  • for learning how to forgive, and knowing that forgetting isn’t as easy.
  • for remembering again and again….I can do this….one moment at a time.

There is so much more I can’t even think right now….actually…I can’t really think right now.  Unfortunately, I’m getting a bad headache…ah the joys of weather change.

What is wrong with me??

On By WendyIn Bipolar, Chronic Illness, Meniere's Disease9 Comments
image by w. holcombe
image by w. holcombe

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

that is the story of my last couple of weeks.

It has been hard.

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

Deep Breath.

Finally I understand….they really aren’t bad people.

On By WendyIn Chronic Illness, Cochlear Implant, Disability, Meniere's Disease6 Comments

I wrote this a few days ago, but did hit enter.  I wanted to read over it and make adjustments….but I had a vertigo attack..and another, and another.  I’ve been having many vertigo attacks since November 1st.  They come on fast and the spinning is very fast.  They last anywhere from 30 minutes to 3 hours.  Yesterday I had 6 of them.  I can’t be on the computer very often the rare occasions when I can.  I can’t read much.  I don’t know if this is Meniere’s or Migraine Associated Vertigo, or a combination.  My guess is a combination.  We have calls in to both my doctor at Duke and the doctor here….yes the doctor here….I’m desperate…and read below you will understand why I’m giving him another chance.

So I don’t know when I’ll be back.  and I didn’t read this over.  thank you all for supporting and hanging in there with me.  You are the best!

So the people at Charlotte Eye Ear Nose and Throat are not so very horrible.  Stuart talked to the head of the Audiology department today.  She said that the doctor I saw has spoken to her twice about making an exception to see me.  Shockers!  Also there seems to be a pretty good reason for them to not see people from different clinics.  They don’t get paid for it.  Yep, it’s in their contract that they don’t get paid for MAPping cochlear implants that they didn’t implant.  Sad.  (for those of you scratching your head right now thinking, what on earth is MAPping? It mainly means when the audiologist adjust the CI’s so you can hear better…but here’s a link to nice explanation with more detail, if you are interested.  It is in easy to understand terms to don’t worry. Mapping a Cochlear Implant).

The audiologist then told Stuart that they made an exception in 2 cases, if it was a hardship for someone to go back to the place they had their CI surgery done, or if they couldn’t travel that far because of a physical problem.  She said, in my case it is both.  Because of the Meniere’s it is a hardship because I can’t drive and I have to depend on getting someone else to drive me.  I am also physically unable to ride that far because of the herniated disc, and because of the vertigo.  So, they are going to see me at this office!

I really wish they had told me this before.  I do understand they they don’t want everyone to know there are exceptions because then people would be trying to bend the rules.  However, if they had just told me they didn’t get paid, I would have understood.  That would have made me very understanding.  I feel horrible that they don’t get paid.  I do not feel right taking advantage of them.  If I only have to see them once a year or so, we will just pay them for the visit.  If I have to go numerous times, I will try to go back to Duke.  Right now, I really need to have this done, and I can’t afford to pay for the visit.  I am so very thankful that they are willing to help me.

My suggestion to them in the future…explain to the patient that they don’t get paid.  I sure wouldn’t have thought they had awful business practices if they had told me that.

On a not so good note.  Well, first a good thing…I woke up on Halloween…No vertigo.  Yay!   By late that night I had a little.  It decided to come back faster than before.  I fell like its toying with me.  Oh my goodness it has not been fun, if I move my head I get sick to my stomach.  I have a headache all the time because I have to concentrate so hard to focus.  Then night before last….major attack!  Dang!  I didn’t handle this well.  Mindfulness…yeah I’m not doing well.  My brain is not staying in this moment.  I keep thinking, what if it doesn’t stop.  After all this slow stuff has been going on for a while now.  I can’t stop my brain from saying building up these stories.  It’s harsh.  And it is making it worse.  Last night I had a little bit more than a mini attack but not a major attack.  I handled it better, and got it to slow down.  I’m just so sad about it.

I’m working on a lot of self care.  Eating well, pampering myself a bit, reading things that make me happy, watching good things on TV, reaching out to people I know give me good advice or just make me feel good, getting good sleep, and enough rest.  Making sure I take my medication on schedule.  Keeping a routine as much as possible.  This is very important.  If I don’t do these things I know I could slip into a deep depression.  I know this because I’m biploar.  But this is important for anyone.  Especially those of us with chronic illnesses.  We can get sick easily when we are under stress, we have to take care of ourselves, and when life hands us some extra challenges we have to be diligent about taking care of ourselves.

I also have to rest more…that may mean taking a nap, or just resting more.  I need to meditate more….now during these times I won’t be able to quiet my mind.  I know that.  and that is ok.  I will just sit quietly, and breathe.  As a thought comes up I will acknowledge it and tell it to move along…I will probably be doing that the whole time…and that is ok.  It will still do me some good, and I’m sure I will feel better.  I need to not give in to my impulse to eat more, especially junk.  Yes, when I get upset, I want junk.  I can’t do that to myself.  Just as I can’t drink or do drugs.  I have to stay as healthy as I can to keep my depression at bay.

So I’m off to do some reading that makes me laugh.

Just wanted to share this great news!

Hubby decided we needed to celebrate.    Dinner tonight…Steak with roasted green beans and new potatoes.  And for desert….a parfait made with bananas, berries, Greek yogurt, walnuts and a touch of maple syrup.  Double yum!   (Ok, so I have that desert often.  It’s really good and good for me!  I feel good knowing I’m taking care of me.)

You can’t help me hear better why??

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease35 Comments
wendy charcoal CI
Me. Image by Me.

I broke down and sobbed at the ear doctor’s office yesterday.  I actually left there sobbing…in the elevator, out the door, in the parking lot…had to stop in the parking lot and catch my breath because of the sobs…then into the car…….

I could not believe what I had just heard!

Not from the doctor, that hurt but I wasn’t surprised.  He mainly said, I had to live with it.  I didn’t realize I was hoping for more until he said it.  but I was crushed.  I was about to cry then.  But I held it together, I knew I would cry later, but just a little…a little mourning once again.  Knowing that I may live with this constant vertigo forever.  The fact that my worst feat was coming true….well just a little.  It isn’t fast vertigo, that is my worst fear.  I will not build up that fear.  After all I may not live with this forever.  I do not know the future!   but the wound was open, and it was raw….I was acknowledging these feelings…it hurt.

Then we went to set up an appointment with the Cochlear Implant audiologist.  Thank goodness, I really need my CI’s adjusted.  When ever I have a Meniere’s attack my hearing goes wonky.  They refused to see me!!!!!  What The *%&^??

First the doctor had said that they didn’t see people who went from Charlotte to Duke to have their Cochlear Implant surgery because they do the surgery there.  OK? well that makes sense I guess….still that is not right.  So you choose to have your surgery somewhere else, then we will not help you after your surgery.  They want to people to have their surgery there that badly?

But he said, since I lived there and moved here, maybe it would be OK.  So they went to set it up….NOPE.

Then they came back saying it is their policy not to take transfers from anywhere in NC.  What?  Charlotte is on the far side of NC.  NC is a VERY long state.  If someone moved here from the far side of NC they couldn’t get their CI’s adjusted here?  That is like 10 hours away.  What?  That is just messed up.  What if my surgery had been done poorly and I needed help?  Oh I’m sure they would help me then, that would be surgery.  This is just seeing the cochlear implant audiologist. I still don’t understand.  They get paid for this.  It’s not like it is free.  The appointment last for 1 1/2 to 2 hours.  It’s expensive.  Frankly it feels like discrimination.   You are one of those people from Duke, we don’t like your kind here.  I am just floored.

So, they say I will have to ride 3 hours to Duke to get my CI’s adjusted.  Yes, that is just torture for someone with vertigo!!  Then to have the CI adjustment is very hard on me.  It always makes me sick and I get a migraine.  Then I will have to endure the ride home…another 3 hours.  (of course if I have vertigo really bad it will take us much longer, we may even have to stay the night somewhere.)  Ugh!

I am at a loss.

There is no other CI clinic in this city.

Right now we are making an appointment at Duke.  I can’t see me actually going to this place after this anyway.  How could I trust my care to them?

I’m complaining to the manufacturer who makes my CI’s because I was told by them I could get my adjustments done there.  I’m sure they have no idea that this place is refusing patients who have Advanced Bionics Cochlear Implants.  (or any other implant from another clinic)

I am really beside myself and this is starting me to spiral out of control.
I am going down…down…down…

I am working hard not to let it.

I am tired of feeling that everything is out of my control.
I can’t even make calls about this.

I want to call that audiology department and find out why this is a policy and see if they understand my situation.  I feel this is malpractice, but according to the Audiology society where I could file a complaint it isn’t.  It is their business practice rules and that isn’t considered something I can lodge a complaint against.  It is discrimination!  I am being discriminated against because of where I had my surgery.

I just can’t believe this.
Normally I would never think of going there after this.

I would want to make them pay, but I wouldn’t let them touch me.

but I don’t want to go so far away every time I need to be seen.

*sigh*

I don’t have a choice.
I can’t do anything, and let’s face it, Stuart is not good at these things….and this stupid office had no way for a deaf person to get in touch with them!!!!

I can’t email them!

I’m not good on a computerized caption phone.  There is always such a delay, and there is always words that are translated so wrong.  I gave up.

I want to scream. guess I could since our neighbor moved this past weekend.  LOL

OK….

I’ve vented enough.

That’s my predicament
on which I will lament.

Wanting to take care of me
but have to depend on he.

How do I reconcile myself to this half-life?
or do I continue to wrestle with this internal strife?

Many of life’s offerings I willingly accept,
but loss of all control, I’m not so adept.

This is today, I can’t predict tomorrow.
let me, wipe away these tears, let go of the sorrow.

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!