Category: Meniere’s Disease

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’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

Living in This Moment

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

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

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

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

In the very harshest moments, the fear takes over.

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

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

BREATHE

IN

OUT

BREATHE

ahhhh, just a little.

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

Stay in this moment.

Do not think about the next moment.

Stay here…right here.  In the NOW.

 

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

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

It is the MOMENT.

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

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

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

Everything changes.

Each moment is a moment.

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

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

It is the moment I have.

I will live in this MOMENT.

 

 

 

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

On By WendyIn Chronic Illness, Meniere's Disease8 Comments

 

Courage1
by W. Holcombe

 

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

 

I can’t stop a vertigo attack.

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

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

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

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

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

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

So I ask again.  What did I learn?

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

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

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

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

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

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

Will this knowledge prevent future attacks?  Maybe

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

I can never be in control.

 

An Expedition – One Mile From Home

On By WendyIn Chronic Illness, Meniere's Disease8 Comments

I was feeling good on…oh what day is it now?   It was on Thursday…yes, that’s right.  We needed a couple of things from the store, and since I had been doing better, I decided to join Stuart on the expedition.

I was so proud of myself, I had been going downstairs pretty much every day, I had taken 3 baths! (for those who know, that’s a big deal for me, I’m terrified of having a vertigo attack in the bath)  I felt I had made strides.  I was feeling good about them.  Yet, I was feeling jumpy, a bit rough around the edges, but thought it was just nerves, and anxiety about doing more.   I even noticed that I was feeling a bit, shall I dare say, manic.  It wasn’t full-blown, I even told Stuart, if I didn’t feel ill I would be feeling really, really good!  It was odd.  A jittery sort of odd.  But I felt BETTER!  I even got up and put make-up on…and everything.  I realized I haven’t paid much attention to me in a long time.   I want that to change.  So….I did what I could to head out with my husband.

As we started to leave I got a little antsy and started not to go.  Just felt like my footing wasn’t right.  It took me a minute, a few deep breaths, but I was dong so well, we decided to just go pick up the 2 things at Walmart because it’s just ONE MILE from my house.  That way if I started feeling bad, we could get home quicker.  That was a good plan.  Just this little shopping center a mile from the house, I can do that!!

When we arrived I was doing well so we wandered a bit.  Then we went down a row of canned goods.  They all decided to just roll down the aisle a bit with me.  I stopped, focused down to the basket, concentrated, calmed myself and was steady again.   I told Stuart that I thought we needed to leave.  He, of course, was more than agreeable to get out of there, but we got to the line and the first few were FULL….I was feeling anxious, nervous, and a bit claustrophobic.  Suddenly, the bitch came out!

Stuart:  “It’s going to be a while.”  Me:  “NO, there’s a shorter line right down there!”  He goes toward it, I am looking at the next line, someone jumps in the line I’m looking in and he jumps out of his line.  I’m fussing, “What are you doing?”  He’s telling me he didn’t know what I wanted….ect.  I just needed OUT.  I was getting more and more anxious even though I wasn’t “feeling” worse.  I wanted things to not be as they were!!  (not a good thing, I should have just calmed down, taken stock of what was going on…probably unplugged my CI’s because the noise was getting to me, and taken some meds…..but instead, I reacted, poorly.  And now I’m wondering if I don’t always do that when this is happening?

Stop! Yeah…..you, Stop the story!  

What?   Who’s that?    Oh….it’s me talking to me….what have I done now?????

You are not telling it right.  Just tell it.  Don’t analyze.  You are telling part of the story you shouldn’t even know that yet.  You are already asking.  “What did I do?, Why did this happen?, What caused it? Why didn’t I notice the signs?”…. so   STOP.  Now….just tell the story, then after it’s over, maybe you can look back and see if there were things you missed, triggers that you didn’t notice, anything that might help, but now…..STOP, it’s self blame for something you have no control over!!!!

OK……I guess I should listen to me.   So….the rest of this story….have I completely screwed it up so far?  Should I start over?   eh….I’m way too gone to think of things again.  I’ll just tell what happened next….  So where was I????

We took our stuff to the car.  I wanted to go to another store that was in the same shopping center, so I mentioned that it would take just a minute to see if they had what I wanted.  Stuart kindly said, “or we could come back tomorrow….”   Bitch attack again!!   “Do you realize how much more that would take out of me?  It takes so much for me to come out and we are right here…..”  and I stop!  In mid-rant.  What the heck?   I was so sorry.  I was aggravated, but there was no reason for me to act like that.  I was so agitated!  Then I was so remorseful.   I couldn’t believe I just went off on him because he was trying to be thoughtful.   So, apologies flew from me, and we prepared to drive over to the other little store.   We backed out of the parking place….drove down the lane….and

walmart vertigo
photo manipulation by W. Holcombe

This Happened!

“Can you please pull the car over?”

Stuart – “What? Now?”

Me – “I need you to stop the car now please!  I need a shot!!!”   (let me explain about the shot.  Because I have migraines so bad I have a prescription for Phenergan shots.  This normally helps stop a vertigo attack faster than anything else, so I keep some with me at all times.)  I also took Valium at the time.

Yes, that’s when the attack started.  We were driving out of the parking lane, and got close to the end and WHOOSH, the world spun!   (the little snapshot above does not do the motion justice!)  I felt like my head was being thrown around in the car.   Stuart got the shot in me fast!  Suddenly things slowed, then they just went crazy again!  I was stuck huddled in the car for an hour, just trying so hard to hold it together.   Nothing was stopping this attack.   My darling husband spent all this time talking to me, trying to say anything to just keep my mind off of what was going on.  And trying to keep me as comfortable as possible.  I am grateful the vomiting didn’t start in the car, but I was so SICK!  Spinning…spinning….ohhhhhh.

Finally, I asked Stuart to try to move the car a little.  At first I couldn’t stand it, then I just knew I had to get home.  Things were bad and I had to feel safer.  As I mentioned, we live ONE MILE from this store.  He drove home, slowly.  He told me every little turn, every bump that was going to happen…everything.

We got home, he got me in the house.  I collapsed on the couch and started to vomit.   I had to go to the bathroom so bad, I also lost control of my bladder.  But I was safe.  And the attack got better.   The severe spinning subsided.  But I didn’t sleep, I was so jumpy!

After an attack it’s normal to simply pass out from exhaustion and sleep for a long time.  I was still so jumpy and antsy.  I was miserable.

I’ve had a long past few days.   I haven’t had one moment since this attack where I felt my head was steady.  Am I having full-blown vertigo all the time, no.  But, if I move my head….well, let’s just not move my head!   I can only sleep on one side, if I turn over I have vertigo.  I’m a mess.

So this is part 1 of this saga.

As my inner self decided to step in above, I think I’ll take a little time and reflect on this.  Think about what happened, and what I learned.

Next Post…… A Look Inside:  So what did I learn?

A tiny little update

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

After my last post I feel horrible I haven’t been back here sooner.

I’m not having a good time with the vertigo recently.  My dear friend, Mr. Meniere’s, has decided to settle in for a visit.  A long horrible visit…so this really will be very short.

Saw my psych doctor last Wednesday.  She is supposed to be talking to my Neurologist (headache pain specialist) about a drug we discussed putting me on.  (a good idea huh?)  But it’s taking a long time.  I did see her late on Wednesday so things probably didn’t get started until Thursday…but my goodness.  Well, I won’t get in to all of that.  I’m upset about that visit….but I’ll vent later.

I am having a better time of it.  Not cycling so much now, I’ve been pretty level for a couple of days now.  I’m reading more of the Buddha’s teachings, and it helps.  (I’m not pushing Buddhism here….I just get very comforted when I read his teachings and try to follow the practices.)

I really need to control my anxiety.  I know the vertigo is more out of control because of the stress.  It is my greatest trigger for Meniere’s.

I need to have emergency plans in place…just in case.  This helps relieve my anxiety about a situation I have no control over.  It gives me a little control.  For example, I have an emergency kit for when I have vertigo attacks.  I feel my severe vertigo attacks have fallen drastically since I created this kit.  I have one for home and one for travel.  It eases my mind.

When I started feeling suicidal, I knew it was my illness, but it didn’t really matter.  So when I cycled enough out of it to be able to really communicate with my husband, we made up an emergency plan.  I know where to call, or go if I feel I am going to hurt myself.  My husband put all of my medication away and gives it to me as prescribed so I will not….tempted when I fall in the darkness of my soul.  We have a plan.  It has helped me so much.  I now feel that I am understood.  My husband knows how I’m feeling, as much as he can.  He’s taking me seriously, and helped me to have in place a way to make it easier when (or if?) the dark lady returns.

Today, we talked about an emergency plan if my husband remains out of work.  We can’t wait until there is no money left, it will cost us money to leave here.  We need to know at what point do we need to decide to leave.  Where we are going, and how things will happen.  There are parts in there we are pretty sure about, but we need to solidify this plan.  I’m so anxious about our future I feel paralyzed.  I know that it is adding to my feeling so very ill.

So….I’m here.

I’m not on the computer a lot right now because of the vertigo.

I’m working on getting the psych meds straight.

We are working on an emergency plan if hubby doesn’t find a job before we completely run out of money.  (luckily we were able to get on a mortgage assistance plan, or we would be destitute before now.  But right now we don’t have to pay our mortgage because of this assistance.)   This will help me feel less anxious about our future.

I have much more to say….things I’ve been discovering about myself…and just thoughts in general.

Thank you all for the loving support you have shown me.  I have felt these emotions all around me, and it has helped so much.  We may not all know each other in person, but I promise, the loving thoughts sent from all of you have reached me.  And I am eternally grateful.

Dark and Silent – A day with a Migraine

On By WendyIn Chronic Illness, Meniere's Disease, Migraines6 Comments

headache 7

When a migraine really takes hold of me, it’s time for a day with no light and no sound.

Take my medication and try to sleep.  Oh but the pain, sleep just will not come.  A tiny bit of light maybe?  Oh no, not yet.

I must say I’m grateful that I can just leave my cochlear implants off and I’m in silence.  I don’t have to worry about sounds sending me into an abyss of pain.  My room is cloaked in darkness.  I do have to have nightlights, they all point to the floor, showing as little light as possible.  If you are like me and have Meniere’s Disease with hearing loss, you will understand why I must have some light.  There are TWO main reasons:

First, I cannot walk in the dark.  Literally, I cannot tell the direction I’m going in, often I can’t tell if I’m going up or down.  Walking in the dark, is simply not something I can do.  I haven’t been able to stand up in the dark for many years, long before I was diagnosed, or showed any signs, of having Meniere’s.  I remember being told I was just thought to be a little off.  I also get Migraine Associated Vertigo, another reason why it is not advisable to walk in the dark when having a migraine, even if I didn’t have other balance issues.

Second, I cannot hear in the dark.  Let me explain.  The only way I can hear…really hear anything, is with may cochlear implants.  If I don’t have them on, I can’t hear.   I have to see to hear.  I have to read my husband’s lips or the little bit of ASL (American Sign Language) that we know.  That’s the only way I can communicate.  Yes, he could write things down, but I’d need more light to read it than I need to see his hands talking to me.

After taking my rescue medication, then my backup medication when that didn’t work…I finally start to have some relief.  No I’m not pain-free, I’m just not lying on the bed with a huge ice pack on my head wishing that someone would just cut my head off!  The pain has gone from being very close to a 9 (10 is going to the ER pain), to about a 6 or 7.  Remarkably, this amount of pain I can deal with fairly well.  Don’t get me wrong, I’m not bragging that I can take the pain…Oh no!  This comes from the fact that I have Chronic Daily Headaches, so every day my headaches are on the 2-3 level.  I don’t complain until it hits a 5, and only then because I know it will be getting worse.  At a 5 I will often take something, but I need to be careful, I can’t take something if I’ve taken something for too many days in a row, this will cause rebound headaches.  I never want to have rebound headaches!  Before I knew about rebound headaches I took too much medication.  I hurt, I took something, that’s the way it works right?  But you can get to the point where your body says, OK, it’s time for you to hurt so I can have that pain medication.  It’s strange.  I know I’m not giving sound medical rationale about this, but that’s the way I think of it.

I’ve been told that today is a very beautiful day, with temperatures close to 80 degrees F.  The sun is shining and the flowers are starting to bloom, a great day to take out the VW Bug convertible (that I got a few years ago, and now I can’t drive…but I still enjoy it).   Instead of having a lovely day out with my husband, I’m closed up in my bedroom (I literally haven’t left this room in a week, or more.   I’ve had so many migraines and vertigo taking the stairs is just too risky.)

I’m only able to write this in small increments with my computer screen dimmed as far as it can go without being black.

Why is the Botox not working?  I have no idea.  It normally takes a week for it to kick in, but it’s been over a week.  I hope this doesn’t mean that this treatment has stopped working for me.  I’m not sure what we’d do next.

Days like this…well the week like I’ve had, makes me feel so useless and..oh I don’t know how to say it, I feel like I’m just alive, but I’m not living.  Understand?

If you have times like this, what do you do?  How do you start to feel useful again?  I feel it’s been so long since I’ve really been useful.  So many people wish they could just lie around in bed all day, never having to do housework, always having someone to wait on them…..but I tell you, it’s not really what they want.  Living like this is torture.  I want to be able to cook and clean.  Work in my studio.  Have a Garden.  But, it’s just too much on this body and mind of mine.  I say figure out something small, but I’m out of suggestions.  If I didn’t have this blog, and the blogs I follow….my friends in my computer, I would feel completely worthless.  Thank you all for giving me that gift.

I apologize that the pain is talking so much today.  May tomorrow be a more pain-free and steady day.

The hardest thing to hear….”There’s nothing more we can do.”

On By WendyIn Chronic Illness, Meniere's Disease19 Comments

I haven’t been posting on a very regular basis because I’ve been having daily vertigo.  Sometimes it’s a short bout of spinning that I can handle pretty well, other times it has been the horrific bouts that cause me to throw up for hours, and lose all bodily functions.  (I know you’ve heard the details before, I’m sorry for the graphic description)

Daily vertigo is so draining.  The constant disequilibrium is one thing, but the vertigo…it’s the most debilitating thing that has ever happened to me.  To have this just hit me out of the blue, leaves me with such fear.  This past week I’ve woken up with vertigo at least 3 times.  One time I was on the verge of throwing up, and I admit, I completely freaked out.  That bothers me so much.  I have been keeping my cool through the attacks, but then that happened, and I’m terrified.  How can I feel comfortable ever leaving the house when I know that daily I have these attacks?

We can’t be sure if the vertigo is being caused solely from Meniere’s, I also get vertigo from the Idiopathic Intracranial Hypertension (IIH), and Migraines.  I saw my otologist (ear doc) yesterday and told him everything that has been going on…..he was so distraught.  There was another doctor in the room with him from Turkey, and both agreed, there is nothing that can be done.

Some people have said I could kill the balance nerves, but that is not an option for me.  For a number of reasons.  At my age, it’s almost impossible to learn to balance with just your eyes…and when they say that you balance with your “just” eyes that’s not really right, you use the balancing nature of your muscles, bones, ect.  It’s easier to do this at a young age, children can often overcome the loss of balance from the ears.  But this 50 year old woman who has been using her ears to help balance for her whole life, and who has trouble with her hips and pelvis so her gait is off, well I would almost definitely end up bed bound having vertigo constantly. I’ve never been so overcome with emotion.  I just cried, I had a very hard time composing myself.  My doctor looked so tortured and kept saying he was sorry.  I told him he didn’t cause my ears to be like this, but I know he wants to help.  It hurt him so much to tell me he just couldn’t help.  He told me if he finds out anything that might help he will call me immediately.  I know how much he cares, and it pains me that my illnesses has made him feel useless.

I feel odd today.  I’ve felt so defeated and depressed lately.  It’s simple, I just didn’t feel I could continue to exist like this.  When you feel your life is only just existing, and that existence is completely miserable, then why are you existing at all.

Today, after learning there really isn’t anything medical that can be done, I actually feel like a weight has been a bit lifted.  I know I have to deal with this, I can’t just keep thinking that there must be something that can be done.  I’ve come such a long way in dealing with my vertigo attacks.  Often, I can stop them from getting to the most horrific stage.  It’s difficult, and it’s challenging, but it’s helpful.  I’m still stuck being very still, not allowing myself to look beyond an article just in front of me (if I focus further away I will spin harder), trying to stay calm, taking deep breaths, and telling myself over and over that it IS NOT REAL.  Of course, getting the meds in me as fast as possible has helped a lot too.  So now I know what I have to deal with.

Just-relax-and-stop-stressing-so-much

I know stress is making things worse and my normal exercises that I have come to rely on to reduce stress is not working, so I have to do some research and try something new.  I’m thinking about hypnosis, after we have income coming in.  I have a focus now….what can I do to reduce my stress? The stress of:

  • my husband being out of work since April 2013, and me not being able to work.
  • having my disability denied and now that we are in the appeal process they are saying it will take over a year before my case will even be heard.
  • my father just started treatment for liver cancer
  • the continued asthmatic symptoms without being able to get much relief.
  • an increase of migraines….is Botox no longer working, or are the migraines being caused by the IIH
  • an increase of IIH symptoms
  • breaking my foot
  • not feeling stable at all.  Not knowing where we may end up, not knowing what is going to happen…this is not good for me.  I do not do well when I feel like my life is up in the air.
  • not being able to be intimate with my husband…and yes, even with everything that is going on with me, I would like that part of my life back.
  • ……….that’s enough to list isn’t it?  yet, yes I can think of more.   (Deep Breath!!  In…Out…repeat)  OK, that’s a little better.

How do you handle stress?  Any suggestions.  I’ve done a couple of things, but more needs to be done.  My stomach hurts all the time….this cycle has to be broken.