Tag: Disability

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.)

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

Gratitudes in the middle of a mess

On By WendyIn Chronic Illness13 Comments

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

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

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

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

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

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

I’m grateful there is a park nearby.

I’m grateful Stuart works very close.

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

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

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

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

And yes, I do mean that.

quotes-1523
mediawebapps.com

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

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

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

 

Moving Day…kinda sorta

On By WendyIn Chronic Illness6 Comments
moving-day
We left all of this stuff behind!!                                                     found this cute clip on wanderingbohemian.blogspot.com

I wish I had been writing short little post all along, because now I really have no idea where to begin.

This has been so very, very, very hard.  Yet in many ways it has been so very liberating.  Liberating because I feel I am being unburdened by so many things that I do not need.  How did I get so much stuff?  When I met my husband I lived in a studio apartment.  Where did it all come from?  And truthfully, for just me, I had too much stuff then!  Getting rid of all of this clutter is freeing.  I keep thinking, for the past few years I have lived without even thinking about this stuff why do I need to have it around me now?  There are some sentimental things I’m having a hard time parting with, and I’m holding on to some of those.  I think I’ll have a second ‘cleansing’ later.

Then there have been so many other very hard parts.

Physically.  Physically, I just couldn’t do as much as I wanted.  As much as I felt I needed to do.  I got so sick.  All the dust and stress, and just everything caused me to have major symptoms.  My breathing.  I had the hardest time breathing on many days.  Twice while I was sorting through things I realized I was confused, once I was giddy, I got up and couldn’t walk straight.  I got out of the room and each time Stuart saw me and helped me to the couch.  Then I started coughing.  I’d cough up a lot of mucus and need my inhaler and a nebulizer treatment.  I was not getting enough oxygen.  I wasn’t wheezing yet, so I didn’t even realize it, but my lungs were filling up with mucus.   This whole situation, has really opened my eyes as to just how little I understand about my lung issues.  I’ve had to cancel many appointments with my lung doctor because of vertigo, and now my doctor is finishing her residency with Duke so I would be seeing a new doctor, so I’m going to start looking for a new doctor in Charlotte as soon as hubby’s new insurance kicks in.  I’ll post more on that when I see the new doctor, I don’t want to say more about it until I get more information.  For now I’ll say, I’m keeping a closer eye on how I’m feeling, how I’m breathing, and how it’s all going together.

The breathing difficulties made it very hard for me to help as much as I felt I needed to.  Yes, I do mean needed to, because no one else could say if my stuff was to go to the new place or not.  And we did not have the luxury of just packing it all and deciding what to keep later.  We are moving from a 2300 sq ft home to a 700 sq ft home.  Things had to be trimmed!  So I tried wearing a mask, it worked somewhat, but it made me less air flow, this made me feel like I couldn’t breathe….maybe I’m a bit claustrophobic?  Maybe a little, but I wear that mask out all the time with no problem, but I’m not exerting myself.  I guess that’s what was making it difficult, or perhaps I was just already so irritated.

Then the headaches were getting bad.  Maybe because of the breathing issues, maybe because of the stress, maybe because of all of the above….or the weather, or ……my head was / is hurting.

I was having more vertigo.

The last 5 days at the house I spent most of 4 of them in bed.  Talk about GUILT!   However, I got a lot done from the bed.  Stuart would bring me things to go through in bed.  Not sure that really helped me much physically, but mentally it helped.

I have not been doing well with my Mindfulness Based Stress Reduction studies.  I think if I had been doing them longer I would have been able to deal with this better, but nope, I didn’t deal well.  Kind of went right out of my brain.  I’d try every now and then….and then I’d just look around at my completely torn up house and think….how on earth are we going to do this?  and FREAK OUT!

Well, things got done, as much as they could.

Movers came today…..Oh that’s a story.   The relocation movers.  Couldn’t come until today, the 17th.  Are giving us a FOUR DAY WINDOW to deliver.  That means delivery could happen on the 21st!  That’s the day Stuart was supposed to start work!  Ummm…..this is the relocation company that Stuart’s company uses.  So, luckily his boss is very understanding and he is going to start work on the 28th.  Phew!

Can I just say, moving under the best of circumstances is not easy.

Downsizing like we are makes it more difficult…..even if you want to do it.

Having very little to no help makes it extremely difficult!

Having a chronic illness on top of all of that can make it pure hell.

My saving grace, as always, having a spouse who is willing to go that extra mile to make it as comfortable for me as possible.

That’s why, today is moving day….and I’m sitting in a hotel room with Max the many toed cat.   We didn’t need a freaked out cat there while the movers were doing their thing, and I didn’t need to be there with more breathing irritants and getting more stressed.   (ahhh…deeeeeep breath!!!!)

I’ve been a bit scared that this whole thing is going to make me go back a bit….meaning, I’m going to end up back having daily migraines, tinnitus, pain, vertigo…  Not being able to do much at all.  I have been doing so much better.  suddenly, I have been really scared…..

Then I thought.  That’s tomorrow.  I have no control over tomorrow.  My worry isn’t going to change it.   I can only continue to do what I know to do, and if I feel good, great, if I don’t, I’ll reevaluate.  I’ll just live in the moment.  That’s all I have.  And right now, this moment is pretty good.

Hubby should be here soon.  Max is dreaming kitty dreams.  I see kudzu taking over the fence outside my window.  It’s a normal day in “The South”.

 

GRATITUDES in abundance this week!

On By WendyIn Chronic Illness, Disability, Gratitude16 Comments

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

I have so much to be grateful for this week!

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

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

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

Baby Bunnies
Baby Bunnies

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

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

More things I’m grateful for this week!

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

That’s it for this week.

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

What are your GRATITUDES this week?

Hey Doc, You are Fired!!

On By WendyIn Chronic Illness, Mental Health11 Comments

you're Fired

Small note…I started this post on Friday, April 18th.  I updated it today.  It’s a bit long, sorry.  I apologize if it is a little bit jumbled, my head is in that frame of mind right now.  Trying to get everything in, and just now knowing where to stop.  As normal, there may be grammar, typo’s and all kinds of mistakes, if it’s too much, just let me know.  But you may get a long letter back.  : )

After much toil and trouble trying to get help from my psychiatrist, it’s time to give up and move on!

Hey Doc, You’re Fired!

I wonder if firing a doctor makes them understand much, after all, they still have a job, but they don’t have me as a patient any more. If she continues to treat patients the way she has treated me, I don’t see how her new practice is going to survive!  Also, where I’m concerned, she will be told why she no longer has me as a patient, maybe it will bring some understanding.  I’m sure part of this is my issue, but some professionalism must be maintained between a doctor and patient.

From my last post you may remember that I saw my psychiatrist on Wednesday, April 9th.  (This was after a month of trying to get my medication straight and get an appointment to see her.  All of that after having side-effects from a medication that I should never have been put on.  She did not look at the medications I had been prescribed by other doctors.  If this had happened, and we had discussed this, I would not have been prescribed a medication that interacted with my other medications.)   On the 9th, we discussed my medication, and I discussed the fact that I felt the need to start an emergency plan in case I was going to hurt myself because I was having many thoughts and desires of doing just that.  I really felt this was not taken seriously, perhaps because my husband is with me most of the time, and cares for me?  I don’t know, I do know I left the office wondering why that was just brushed off.  One reason she may have thought I didn’t need more discussion on this is because I was taking precautions.  I had my husband lock away all of my medication and only dispense them as they are prescribed.  I had him looking for more clues, other than just me balled up on the floor falling into an abyss.  Yes, I was cycling, so on the good swings I was able to try to set an emergency plan in place.  But on the down swings….well, that’s a different matter all together.  However, I cannot stress enough, if you have any mental health issue and feel you may harm yourself, try very hard to make a plan that will help you.  If you want to know more about what I did…please contact me, just look at my About Page.  It may not be everything, but I found it a great help that I knew I was helping myself in some small way even when things were spiraling out of control.

During the latest visit we did make a plan for my medication, but she wanted to talk with my neurologist to make sure the medication she put me on wouldn’t interfere with any other medication she had me on.  Finally, I thought, a Great plan.  She said she should know by Friday, April 11th,  and would be in touch.   That didn’t happen.  My husband called on Friday, Monday, Tuesday, Wednesday, Thursday….and Friday (when he called on Friday the 18th he learned the office was closed for Good Friday).  Each day he only got a recording to leave a message, he never talked to a real person.  I emailed the main office on Wednesday to reiterate that my husband was trying to get in touch, and no one had called him back.  I also made sure they were aware that he is authorized to speak for me, as I cannot talk on the phone.  (This is listed in my files, he has full power of attorney for me.)

My husband also talked with my neurologist.  She said the medication would be fine.  (I’m not sure if the psychiatrist ever actually got in touch with her or not.)   Thursday, April 17th hubby and I talked and decided we would ask my neurologist or general doctor if they would write the prescription for the medication.  Preferably, my neurologist because it is a medication she often prescribes.  (I had already decided I was going to change psychiatrist  but I needed to start the new medication now, who knows when I’ll get an appointment with a new psychiatrist.)

The plan for Friday was to call the psychiatrist first, trying to reach out one more time.  Then call the other doctors mentioned, and to get in touch with my therapist, and hubby’s therapist to see if they might have recommended psychiatrist for me to change to.   However, when hubby called, (as I said earlier) the psychiatrist office was closed for Good Friday.  Yet, she still had not returned any of our calls!  (yes, I am so disappointed in this woman, you have no idea!)  He also called my general doctor, and her office was closed.  He called my neurologist, and she was in!!!  Yay!  She also called in my prescription!  (she was already calling in a prescription for me for steroids to see if we can break this cycle of the killer migraines).  I must say, most of my doctors are WONDERFUL!  I love them, and I know they care about me.

These are just a few of the reasons that I’m firing my psychiatrist, but there is something else that really bothers me about the whole thing.

When I first saw this doctor I had a very good first visit.  It felt right.  Then when I returned for my second visit she seemed to have forgotten everything we talked about.  No, I don’t expect my doctors to remember everything from every visit, but I do expect them to look at my file and be a bit up to date when they walk in the room.  She met me by telling me that she was leaving the practice I was seeing her at, when I was referred to her I was told she was not taking new patients, but since she worked so well with my therapist  she would accept me.  I was conflicted about this because my therapist is with that practice and I like for my doctor and therapist to have a good working relationship.  But I felt very good about the first visit so I decided to follow her to her new practice.  (and when I say new, I mean, they were just starting it, so it’s a big deal for the doctor’s involved.  I realize this has to be a lot for her to deal with, but it shouldn’t be at the neglect of her patients).

Now that I think back on this, it bothers me.  First, it was questioned if she was taking new patients, and she decided to take me on because she likes my therapist so much….ect.   I was thrilled at the time.  Now I think, she should never have taken me on as a new patient when she knew she was leaving that practice.  She had to know, my first and second appointments were only 2 weeks apart.

I know this post is getting a bit long, but I feel I would like to say some good things too.  When I first saw this psychiatrist, I felt validated for the first time in years.  She understood how I couldn’t just exercise…ect.  She seemed to really understand my chronic illness and was willing to work with me.  We discussed that at some points I may have to cancel my appointments on short notice, she understood and set me up special appointments on her planning days, so if I couldn’t come, she wasn’t losing any money.  This plan was still in effect at her new office.  I only had to cancel at her new office ONCE, so I don’t think this should have been an issue; but I don’t really know.  There are 2 other big things that bothered me when she moved.  I have severe asthma.  She put an aromatherapy thing in her office, I could not breathe in there.  I put on my mask and got way to hot and couldn’t stop coughing.  We had to move to the conference room.  I was very uncomfortable there.  We were even interrupted by her husband and that made me feel very odd.  I know it is too much to ask, but after her extreme understanding, or so it seemed, at our first meeting, I kind of expected the smelly thing to be gone from her office when I returned.  I guess she doesn’t have any other patients with scent issues.  One huge thing, as you all know, I have a big problem hearing. this doctor talks very fast.  I ask her often to slow down.  She will apologize and then continue to speak at the same speed.  This is the reason I have to have my husband in my sessions.  I would prefer not to have him in there.  It takes more time, and I feel I’m just spending time going back and forth trying to understand things.

Now, we wait for a bit to see if she will actually return my husband’s calls next week.  If she does, he will explain in detail why we will no longer be in need of her services.  If she doesn’t, I will be writing her a letter.  At this time I’m not sure what other actions I may take.  I do feel doctors should be more responsible for how they treat their patients.  They are in charge of a person’s health.  A mental health provider could the that cog in a person’s life that changes a life forever….or puts it in a delicate balance of life and death.  Am I being overly dramatic here?  I don’t think so.  If I believe my doctor cares and is trying their best to help me, I feel better.  If they ignore me when I have made it clear that I am in a very tenuous state, I feel less like a human.  This is a huge responsibility.

If she calls, we will simply discharge her.  I can understand that she may be way over her head in the new office, that she may have hired the wrong front staff people….ect.  I feel compassion for her about all of this.  There may be extreme circumstances in her own life.  In a business, especially one of this magnitude, extenuating circumstances should have been relayed to the patient and taken care of by another doctor on call.  But she doesn’t even call???  No one called.

So now you know my whole story.

On closing….my therapist got in touch and recommended a new psychiatrist.  We have been in touch, and will see where we are going from here.  I’ll keep you updated on that.

Always remember, we need to be an advocate for ourselves!

If a doctor doesn’t treat you with respect, or if you are just uncomfortable in their care, and you have any way possible, change doctors!  I know some people just can’t do this as easily as I can.  I grew up in a very rural area, I had two choices for a general doctor.  No choices for specialist.  The nearest doctors of choice were over an hour a way.  (this may have been a major reason I was not diagnosed with Bipolar I Disorder as early as I might have been.)

Yes, I may have a mental illness, and recently I may have been very depressed because of my medication has not been working properly, but I am a human being.  Oh a better note, I am feeling much better (I know I need to get my medication straight because with Bipolar I Disorder I might feel fine one day and not so much the next).   Doctors still need to take patients seriously.

Yet, I realize that a lot of people will think, “She has a mental illness, is admittedly not stable, she is probably exaggerating about things.”  Or something like that.  I’m lucky I have someone (my husband) who can also help be an advocate for me and explain this is not “all in my head”.   But what if I didn’t?  What if I didn’t have the ability to just change psychiatric doctors?

There needs to be much progress made to help people who need mental health care.  (or health care in general) If they can’t afford it, they are often put on a LONG waiting list to see someone that the state provides.  They have no choice in doctors.  They are often lost in the system.  When you are having mental health issues, trying to navigate the system to be seen at all is extremely hard.  (Yes, I am speaking from experience).   Things need to change.  How can we bring about a change?

I’ve thought and thought on this issue, and I just can’t see how to make things better in this country.  Are the mentally ill meant to live a life of less?

Mental Health care (and general health care) in this country is great….if you can afford it!

Thoughts?  Ideas?  I’d love to hear them.

The Bipolar Cocktail – when the mixture isn’t right…

On By WendyIn Bipolar35 Comments

Medication_cocktail_by_LaChixMany illnesses are treated with a cocktail of medications, Bipolar type 1 is not different.  For me, I must have a mood stabilizer, an antidepressant, an anxiolytic (anti-anxiety drug), and….I can’t remember if there is anything else.  I think that’s it.  Right now the mood stabilizer is working.  The antidepressant isn’t working, and the anxiolytic is trying hard to work but I have a lot of reason to be anxious.  (that’s what my therapist told me on Thursday anyway).   Of course, you could say I have a lot to be depressed about too, but I don’t normally let depression take over my life.  I’m fighting hard to keep telling myself, “This will get better.”, but it has been a bit overwhelming lately.

The tears, so many tears have fallen.  The words, “I’m sorry.” have passed my lips so many times I’ve begun to wonder if I can finish a conversation without saying it.  I’ve been told by professionals that I don’t “wallow”.  Oh if they could see me some nights, they might just change their minds.

Recently I completely lost control.  In a complete panic! I needed to leave.  I needed to get away from my husband before I hurt him any longer.  I know I’ve become such a burden, I’m not a fun person, I’m worthless, and useless.  I wish this wonderful, caring man had never met me.

How could I leave?  I can’t drive.  Where would I go?  I have no money.  What could I do?  The only answer.   Take the dark lady’s hand, I hear her promises to make it all better.  To help my husband.  To end the pain for both of us.  I reach out….and suddenly I stop!  NO!  This is my illness talking!  It will get better.  My husband loves me, and if I leave with her, he would be devastated.  I can’t hurt him.  “NO! my  lady I will not leave with you.  I’m stronger than you!” … at least for now.

I knew my resolve was weak.  I knew I couldn’t trust myself.  I grabbed my computer.  I searched and searched….I needed an inpatient hospital.  Somewhere I could go for just a little while.  Somewhere I could be made to not listen to the dark lady beckoning to me with empty promises.  I found a listing, I hit on it…..Site Not Found….What???  I went to the next place on the list…it wasn’t an inpatient facility…the next, same thing….again…again!  I threw my computer!

I was so livid!  And so…..I don’t know….I really don’t remember what happened immediately after that.   I know I ended up getting in the bath, (for those who regularly read my blog you will know how odd this is for me, I’ve become quite phobic of the bath due to my vertigo, but in the bath I was.) and my husband joined me.  He held me, and we just laid back in the water.  I talked, he could only listen.  (I can’t wear my cochlear implants in the tub, so even if he talked I wouldn’t have known.)  I cried, he held on tighter.  I told him everything.  He knew most of it already.  He did witness it.   When we got out of the bath, and readied for bed, I gathered all my medications and gave them to him.  I took out 3 pills that I might need during the night, knowing that even if I took the 3 together I would not cause myself harm.  I told him to lock them away, until I was better.  Only giving me the medications as I needed them.   (this happened a few days ago)

My cocktail will be remixed on Wednesday.  It will take a while to know if this mixture is working.  Until then, I will be cautious.  I’m still crying a lot.  The words “I’m sorry” are continuously spewing from my mouth.  I not only feel sad, angry, lost and riddled with panic….I feel sick.  My body feels as if it is fighting off an invader.  I keep running a low-grade fever, on and off.  I am hot….I am cold.  My head, throat, all of me hurts.   I had one of the worst asthma attacks I’ve had….ever…yesterday.  It scared me….suffocation is terrifying.   Once I knew my rescue inhaler was not going to work, we rushed to get the nebulizer up and running.  Luckily, I began to feel relief very quickly.  A trip to the ER was narrowly avoided.

Yes, I have an emergency plan in place now for my deepest levels of depression.  Of course, I have my husband watching my behavior.  I have all my medications that could harm me locked away to be given out only at specified times.  We have the address and phone number of an emergency psychiatric hospital.   At times I am thinking clearly.  Other times I feel so engulfed by the depths of depression I cannot imagine a way out, it feels as if I’ve stepped in a tar pit and it is constantly trying to pull me under.  I have to keep my mantra in my head….”I know it will get better.”   I’ve had problems with my medications before, I KNOW THIS WILL GET BETTER!

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.

Being Bipolar….will I ever really be stable?

On By WendyIn Chronic Illness, Mental Health20 Comments
Bipolar
Bipolar by SimoneBryne at deviantArt.com

Note….At this time one of my medications has stopped working, my psychiatrist has replaced it with another medication, but at this point, I am not stable.  I have recently read through the past year of my blog and my personal journals and feel I haven’t been completely stable for a long time, but I have been manageable….most of the time.  When I reference Bipolar Illness below I am referring to Bipolar I.  There are different types of Bipolar, when you think of classic Manic Depression, you normally think of Bipolar I.

This post is going to come from the heart, and will reveal things I haven’t freely talked about outside of my therapist’s office.

From all the tests, and talking, and everything else psych doctors do, my psychiatrist feels I have had Bipolar tendencies most of my life.  My first suicide attempt was at 11 years of age, but it wasn’t the first time I thought of it.  It just isn’t right for an 11-year-old to think that dying would be for the best.  I remember my sister and I had been arguing….I think…I don’t remember what it was about, or if it really even happened.  I guess that wasn’t important.  I know I silently went into my parent’s bedroom, they weren’t at home, I opened the top drawer of my father’s chest of drawers and took out his pistol.  I knew nothing about guns.  It was in a little holster thing.  I don’t think I even took it out….after all, wouldn’t a bullet go through that leather?  I put it to my head and pulled the trigger.

Nothing happened.  I tried again……Nothing.   By this time I was shaking and thought my sister might find me, I replaced the gun right where I found it, after all it didn’t do me any good.  I don’t know if the gun was empty, if the safety was on…or what.  All I know is that it didn’t do what I thought it would.  What I wanted it to.

How can an 11-year-old child be so depressed that she puts a gun to her head, and pulls the trigger?  Was I scared, yes.  But not because of the reasons you may think.  I was afraid of being caught, afraid of doing it wrong, and very afraid of who would find me and have to deal with the mess.

I didn’t tell anyone.  Not for years and years, actually, not until recently.  Since then I’ve had 3 more suicide attempts and serious thoughts and plans for others.  When I’m depressed I simply cannot believe it will ever get better.  The lady in the dark is whispering her promises that it will be better with her, and she is all I can hear.

When I’m more level, or a bit manic, I cannot believe I would ever think that way.  I even have a hard time when  others are feeling suicidal.  How could that be?  I have had a number of friends reach out to me when they have felt the cold comforting hand of death reaching for them and they are so very tempted to reach out and take hold.  I often just can’t understand how they could feel that way.  They have friends, they are loved…look, they have me.  But didn’t I have friends?  Don’t I have friends?  Was I not loved?  Then why…why can I feel it would be so much better if I simply didn’t exist?  Please don’t get me wrong, I can empathize with my friends who are going through their own darkness, I talk to them and understand their feelings…or at least most of them.  But feeling suicidal is very personal, each person has their own demons.   I know I can’t understand all my friend is feeling because their demons are their demons and I can’t hear or see them.  I can only see the light on the outside, and try to help them see a little glimmer of that light, just enough to give them a bit of hope.  However, I would never judge a person who cannot find that hope….that flicker of light that they need to help them out of the darkness.

Many people think ill of those who commit suicide, and even those who have fought the battle and continue to fight.  I’ve heard how it’s the most selfish thing someone can do.  How they are doomed to everlasting hell.   I don’t think like that.  I know many people who contemplate suicide do so because they think they are such a horrible burden on the people they love.  They are trying so hard not to be selfish.  They do not want to cause those they love any more pain.  Yes, the pain from the suicide is something a loved one cannot get over, but to the person who is deeply depressed and sees this as the only way to save their loved ones…it is the most selfless act they feel they can perform.    Do I think someone who commits suicide is doomed for everlasting hell….no, personally I think they have already been living in it or they never would have committed suicide in the first place.

Suicide is not performed by people who are mentally well.  I will never judge a person until I have lived their lives while looking through their soul.  A mentally ill person does not see things the way a healthy person does.  My views on suicide are just my own.  Please do not judge me.  And please, at this time, do not argue with me….I’m not even sure I could handle a grown-up discussion of different views.  You see, I’m having trouble with my medication, and I’m not stable.  I need to release some of these feelings, but I’m not stable enough to debate them.  I promise, when things are better, I will open this discussion up again, if anyone wants me to, and we can discuss it then.

Oh, the Bipolar…..That is what I started to talk about isn’t it.  It isn’t all about the depression that takes me to the depths of my own hell.  There is that other side, the euphoria of mania.  It can be so seductive.  Many people who are Bipolar I, will often stop taking their medication because they feel numb.  No, they don’t miss the depression, but the mania….it’s like a drug.  Some of the best artist (of all kinds) have been Bipolar, or more as it was more commonly known, Manic Depressive.  When one decides to go off their medication, I don’t think they think about the depression that seeps the life out of them, they are thinking of the high they get from the mania.  Speaking from experience, it is so very hard to feel that high of creation when you are taking your medication.  I used to have sparks of inspiration and spend days in my studio, never leaving, barely sleeping….painting, and painting, and painting….I have never felt that surge of creativity since I started my medication nearly 20 years ago.  Do I miss it?  I could never express into words just how much I miss it!  I do not believe I have created a piece of artwork that stands up to anything I created before I was diagnosed.  So yes, I miss it.  But do I miss it enough to risk the rest….NO.

Bipolar doesn’t just include the extreme lows of depression and the euphoria of mania….it also includes uncontrollable anger, confusion, for some a loss of time, and a myriad of other symptoms…always to the extreme.  I used to notice when I got happy from something, it simply didn’t stop.  I didn’t just get happy, it kept growing and growing….oh it’s so hard to explain, but that’s how I felt about most of my emotions.  The emotion would start, like any normal person’s emotion would, but my emotion wouldn’t stop….it grew, to the point where I felt the emotion was no longer mine, I was the emotion.  I have huge gaps where I simply lost time.  I have no idea what happened during that time.   There have been out of control arguments, but I can’t remember anything about except the anger.

When I first started getting serious with Stuart I decided I had to be honest with him if we were going to have a real relationship.  It was very hard to tell him I have a mental illness, I am Bipolar.  Due to this, I have no idea how many men I have slept with.  He took it like the man he is, with grace and sympathy.  He held me while I cried and explained more about my illness.  How I was being treated…ect.   (He is a very good man.)

There is much more to my story, some I can never tell, because I simply do not remember it all.  Some I can tell…perhaps I should write a book.  *smiles*

Please forgive any typos, or grammar errors…or anything like that.  I started to proof-read this and needed to stop.  If I have offended anyone I apologize.  I hope I have brought a little bit of understanding about what it means to be Bipolar I.  Or what it means to be me.

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.