Tag: Fear

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.

 

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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?

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.

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.

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.

An Accident leads to overcoming a fear…

On By WendyIn Chronic Illness, Meniere's Disease6 Comments
x-ray of right foot poster image from allposters.com
x-ray of right foot poster
image from allposters.com

On Monday, January 20th, my husband left for Las Vegas (I’ll explain more of this later if anything comes from it).  He left the house at 11am, his flight was supposed to leave at 1pm but it was late.  By 2pm he was on his way, and by 3:30pm I had broken my foot.

I keep thinking how nervous I was about him leaving on this trip.  He’s been away before and yes I was a bit nervous, but this time I was scared.  I just didn’t feel good about it.  Perhaps it was because of the many asthma attacks I’ve been having, perhaps it’s because I realized just how phobic I have become about so many things….I don’t know…but I know that I’ve had feelings like this before, and they seem to be almost premonitions.  Something didn’t feel right….and soon something big wasn’t right.

How did I do this?  Well, let’s see if I can explain, I had to explain it over and over and over…but I will admit here, I’m not 100% sure exactly how it happened.  When Stuart is out-of-town we move my essentials downstairs, so I won’t have to use the stairs while he is gone, I have plenty of food in the fridge, and I’m all settled on the couch.  Oh, and one big thing, I promise not to try to walk around the house without my walker, just in case vertigo hits out of the blue, or the disequilibrium knocks me off my feet. (we all know this has happened….often)  So, I got up to go to the bathroom, wheeling along with my walker.  Unfortunately, our bathroom doors are TINY, and we haven’t been able to find a walker that will fit through them, so I leave my fancy walker at the door and hand off to another walker in the bathroom.  The walker in the downstairs bathroom has little wheels.  The walker in the upstairs bathroom doesn’t have wheels, I’m used to it. I caught my foot on the little wheel and was thrown off-balance a bit.  The world swirled and I stepped sideways and fell up against the wall, only a few inches away, I just kind of leaned up on the wall but my foot turned, and I felt a SNAP!  I’m really not sure which foot hit the walker, or anything, it happened so fast, and I was far from being stable.

I knew somewhere in the back of my head that it was a break.  But I didn’t want to admit it.  I often turn one foot or the other, it always hurts, often swells a little, but is alright.  I just ice it over night and the next day it’s better.  So I packed it in ice and elevated my foot.  Then I looked at it, and it looked a bit too puffy….getting a little blue.  I touched it, it just didn’t feel right.  Dangit!  I was a bit paralyzed as to what to do.  Call an ambulance?  For just a broken foot?  Ugh!  And trying to talk to a 911 operator when you can’t hear them…well that was scary…but really I just couldn’t bear the thought of calling an ambulance for a broken foot.  That’s not an emergency.  I could feel my toes, they weren’t blue, I had sensation all over my foot….not an emergency.  And I was still a little bit in denial.  “Maybe it was a tendon just snapping over the bone.  It might just be a bad sprain….”  But as the night went on, I was more concerned.  I instant messaged a friend who I knew would help if he could, and he would at least calm me down.  He did calm me down, but he couldn’t come help, I understood, he has a pretty severe chronic illness himself and lives about 2 hours away.  Finally, I saw an old friend who I hadn’t seen in a long was on-line, so I gathered my courage and instant messaged her and asked if she could help me.  That was very hard.  She has a family of her own, a 3-year-old little girl….a busy life….and we haven’t kept in the best of touch.  Don’t get me wrong, she hasn’t forgotten me, she surprises me with cards and such, and we see each other on Facebook, but it hasn’t been the same since I’ve gotten so ill.  I haven’t seen her in person in a very long time, we don’t have long phone conversations, it’s different.  I asked if my foot was all swollen and blue the next morning could she take me to Urgent Care.  She said, “Yes!”  So the next morning I texted her…I had to go.

Another fear I had to face, going out in public.  Since I’ve been having so many asthma attacks I’m very scared to go out in public.  So many triggers out there, and only my inhaler to help.  But I did it.  We went to Urgent Care, and it was FULL.  A minimum of a TWO HOUR WAIT to be seen, not including if you need x-rays and such.  So we ended up down the street at the Emergency Room.  I was seen right away.  Then sent to X-Ray.  Then taken to a room…in the children’s ward (that was strange, but I guess they had an empty room there).  The doctor looked at the X-Ray and said I had a spiral fracture of the 5th metatarsal (right above my pinky toe), she said I had to see an Orthopedist specialist.  Then they wouldn’t let me eat or drink anything.  I was there for 7 hours at least.  Finally, the Orthopedic Surgeon came.  He decided surgery wasn’t necessary, and I could have a boot instead of a non-weight bearing cast.  I didn’t realize that there was a possibility of surgery, but I was so ready to get out of there, and I could tell my friend was anxious to leave, I didn’t even ask….just let me go.  Later I looked at all the paperwork, and there was a possibility I needed a pin in my foot since it was a spiral fracture.  They discussed putting me in a non-weight bearing cast, but decided not to because I would be at home alone.  If they put me in that kind of cast they would have kept me at the hospital until my husband came home.  After a little research I’ve learned this is the most common broken bone in the foot, and it takes a long time to heal because there isn’t a lot of blood flow to that area….*sigh*.  I’ll have x-rays again in a couple of weeks if it’s healing well – great, if not, surgery could still be a possibility.  I have faith all will heal just fine.

Whew!  What a day!!  After I got home and all alone, I realized I needed a change of clothes from upstairs, and someone needed to take care of Max, our cat…..so again, I overcame a phobia…I reached out again for help.  I texted my neighbor, she has a key in case of emergencies, and asked if she could come over the help me a bit….I’m a lucky person that I have a neighbor who is such a dear.  I cannot say how much I love and respect this woman!  It took a lot for me to ask her for help, but she came!  She helped, and even just visited with me for a bit.

Stuart came home the next night.  I had taken care of an emergency!  Somethings I probably could have done better, but I did it!  And I’m pretty proud of myself.  Stuart is less tense about leaving me alone now.  (FYI..I did tell Stuart what was going on while he was on his trip.  I thought about not worrying him, but that’s not the way we are, we communicate about everything, and it made it easier.)

Sometimes no matter how prepared you are, something might happen you just didn’t expect and you have to deal with it.  No matter how scared you are.

A little update….

On By WendyIn Asthma, Chronic Illness12 Comments

I wanted to let you all know I’m OK, I know I haven’t been around for a while.

I have had some challenges – emotional, physical, and mental.

Wendy - photo manipulated by W. Holcombe
Wendy – photo manipulated by W. Holcombe

First, the trip to Las Vegas, was postponed and we have no idea if it will be rescheduled. This doesn’t give me a good feeling about the company, and that’s sad, because I think Stuart would have liked that job, and we could have saved a lot of money living there. But hubby has had other interviews since then, and it looks like he will have multiple offers…I’m just not sure if he will be happy at these jobs, but right now we don’t have the luxury of him being able to be that picky, and that worries me. We also won’t be able to save as much money as we would have at the job in Las Vegas. (about the same salaries, but in places where the cost of living is higher)

The week of Thanksgiving my father was diagnosed with liver cancer. He has been sent to many

My Father (he's a bit thinner now)
My Father (he’s a bit thinner now)

doctors for many tests, and still he must have more test to determine if the cancer has spread. If it hasn’t the cancer may be operable. It appears to be contained at the moment. I feel guilty I can’t help, and I feel guilty that I would be afraid to help if I was able. I took care of my mother when she had cancer, it was the most difficult thing I’ve done, and the most rewarding. But my mother and I were very close, my father and I have always had a strained relationship. Don’t get me wrong, I love him, we simply have different outlooks on things, and I don’t see him being the easiest person to care for. I feel like that makes me such a bad person. However, I also know, if I was able, I would swallow my fears and help in any way I could. Right now I am hoping he is not in pain, and will not have to go through the horrors of advanced cancer. His birthday is tomorrow, he will be 81. I don’t think he looks it. My father has a full head of the most beautiful white hair. Well enough about that for now. I’ll know more soon.

My asthma has been acting up horribly. I start coughing and wheezing with just the tiniest bit of exertion, and just forget about laughing, that will send me into an asthma attack faster than anything. I almost had to have an emergency visit because of it, but a double treatment with the nebulizer calmed things down. I was doing better for a while, but it’s sad to think that I have coughed every day for over a year. I have also been having sinus drainage, this has not helped the cough, and sore throat (from coughing), but I can tell the difference in the cough. The production is different…let’s just leave it at that. My whole body hurts from coughing.

I haven’t been able to make it to the audiologist to have my CI adjusted, so people are still sounding a bit like they have huffed helium. I’m getting awful sound headaches after wearing my CI’s for just a short amount of time if there is more than one noise in the room. (like the TV and Stuart talking). But I’m pleased to say, I’m still hearing more music than I have in years!!

I’m having some pretty bad headaches/migraines lately. I’m not sure the Botox really helped much this go around, and that makes me pretty darn sad. However, I think a lot of it is my Intracranial Hypertension. I wake up with a horrendous headache almost every morning. Another major trigger, is a deviation in sleep pattern, and I can tell you, my sleep pattern simply doesn’t exist! I am not sleeping well. Some days it’s because I cough all night. Some days I don’t know what it is. The other night I felt like things were biting me….like little no-see-ums. I drove me crazy. So sleep is erratic, and that’s a major trigger for my migraines and vertigo. Yes, that’s acting up too. I keep feeling like I’m on a boat, not a great feeling.

I’ve noticed I have pretty severe social anxiety. I do not want to go anywhere. I don’t want to be around people, especially people I knew before all this started and I haven’t seen much of them (if I’ve seen them at all) since then. I don’t want people to see that I’ve gained so much weight. I don’t want to be in a situation where I’m lost because I can’t hear. I’m terrified to have an attack in front of people. I feel I have so many phobias now I live in fear. The only places I’ve been since we have returned from Tucson is to the doctors, and to a couple of restaurants (this took a lot of courage for me, and we had to go on off times so the restaurant would not be crowded). Every time we go out, even to the doctor’s offices, I get so worked up I have to come home and rest. (all my spoons are gone!)
I don’t feel like anyone understands me. I wish I had some local friends with chronic illnesses that felt well enough to visit. I think part of this started because I can no longer drive, so I can’t go anywhere by myself, this puts me in the mind set that I shouldn’t be out. Or maybe I’m just trying to justify the phobias a bit more. It’s not good to be isolated, I know, but I’m really scared, and often I get so sick before going out that I simply can’t go. You can’t imagine how many doctor appointments I’ve had to reschedule.

On the other hand, there are days I think I can do things I used to do, so I try…and usually fail miserably. This doesn’t help my self confidence about going out.

I think the title of this blog post is wrong. This turned out to be much more than a little update, and I’m cutting it short!

I’ll be back soon. I have much to share. Plus photos of my new CI’s.

What’s up and on my mind…a Free Write…

On By WendyIn Chronic Illness16 Comments

Please note…I’m just going to write and not pay too much attention to grammar or spelling or anything like that, I’m not going to re-read because I don’t want to filter what comes out.  This is an experiment, something I sometimes do in my journal….let’s see what comes to the surface….

Acceptance is not the same as giving up, but if I’m not careful it can slip into that.  I’ve accepted my illnesses, especially Meniere’s with hearing loss, for a long while now, and I’m really ok with it.  I realize things aren’t going to get much better, and my not get any better….now is that giving up?  not saying I’m OK with it, but saying it won’t get better?  When my husband was worried because I had been feeling worse for a while he wanted me to think about going to the doctor and he said, “I just want you to get better.”  I got so mad and upset.  What?  Get better?  What delusional state are you living in?  Do you really think I’m going to get better???  I felt like he didn’t understand….then I realized…after a long discussion that he meant he wanted me to feel better than I had been for the past month, he felt something new was wrong and wanted me to check it out.  Then I thought….could I get better?  Have I given up?  and decided, yes, to a certain extent I had given up.  I was so determined to accept my life as it was, I had given up that it could be better.  Maybe the hearing can’t get better….well, the doctor has told me that much.  And possible the vertigo will never get better….but who knows for sure, I accepted my fate.  I’ve also accepted living in pain.  Hip pain, pelvic pain, Vaginismus, neck pain, arthritis pain….and my other illnesses….I accepted my fate, I’d live with these forever, but really, do I have to?  Yes, I’ve put these issues on the back burner because the Meniere’s, Hearing loss, and Migraines have taken over my life, but as I’ve found that my Migraines can get  better, I can hear better (thanks to the computers in my head) maybe not the same or as well as i once heard, but I can hear….why should I not believe some of my other issues can be helped.  No, I’d given up.  I’d given up on having a normal sex life, given up on being able to walk for any distance without being in horrible pain, given up on so much….  I feel better that I’ve accepted the things I cannot change, but I’m ticked off at myself for giving up on the things I could.  This has changed!!  I’m not giving up on getting better…the things that can get better….I’m not giving up on me.

I had a realization the other night.  I’ve been having full blown panic attacks lately…yes, feeling like I can’t breathe, my chest tightening….everything.  I realize most of these have been triggered by the loss of income in the family, then me being denied my disability claim, and I’m still mourning the loss of Sandy.  (yes, it’s been over a year and an half)  Losing a friend who was so close to me for 19 years has taken it’s toll on me.  I can honestly say I have not grieved for anyone more than Sandy except for my mother.  Maybe it’s because of everything else that has happened in the past couple of years, everything just building up on it…but I don’t think so…my Sandy girl was just so special.

I HEARD MUSIC!!  Yes, that’s right!  I actually heard music for the first time in at least 3 years!  Stuart was out of town for a job interview, and I was watching a movie, they started playing Credence Clearwater Revival’s Have You Ever Seen The Rain?  And I actually heard it!  I understood the words, I heard the music!!!  This new CI likes music.  I still can’t understand many spoken words on TV, but I heard music!  I didn’t realize I missed it so much.

Well, I think that’s all for now.  I’ve been having a hard time keeping my CSF pressure stable, and today is a bad day.  My doctor raised my dosage, and I need to take my meds.  I also have to see a neuro-opthomologist.  (Yes another thing I had accepted, and felt like it wouldn’t get better, I know it won’t go away, but hopefully, it will get better)

My asthma symptoms were much better but not great, my doctor added another medication, and now I’m much worse.  Bah!  Hoping this will get better.

Oh, Stuart’s interview in Las Vegas went well.  We are going to go look around soon and then he will make a decision.  Lot’s to do…well, not as much as I thought, they said they will pay for the move.  : )  But selling the house when we aren’t here, that is a scary thing….at least to me.

Keep meaning to take pictures of my new Cochlear Implants…I want to take a photo of the new beside the old, so you can see the difference.  It’s amazing how much it changed in just one year….but I don’t think it will change that drastically again for a while.

More soon….thanks for putting up with my babbling.  AT least this has some coherent thoughts some of my journal free writing doesn’t.

Learning how to hear….again.

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease4 Comments

I know, I got my processors on Halloween, and I’m just now writing.  What took me so long???  I wanted a picture.  But I still don’t have one.  Sorry.  I promise I will soon.

Here’s a link to a page all about my new processors if you are interested. http://www.advancedbionics.com/com/en/naida_ci_q70.html

Here's a photo from the Advanced Bionics site. My Naida processor is orange, not white.
Here’s a photo from the Advanced Bionics site. My Naida processor is orange, not white.

So far I’m pleased with these, but I have a long way to go with the right ear.  Presently everything sounds a bit high-pitched, or underwater.  When she first turned it on people sounded like Charlie Brown’s teacher, but I could understand some of the words.  I also find that most people sound like they have a very southern accent.  People whom I know do not have one, people who may not have ever been in the south!

I haven’t really started auditory therapy yet, mostly I’ve just been wearing the new processor every day, trying to get used to how it works, and simply hearing something on the right side. I’ve  been VERY tired lately.  I know it’s to be expected with the new CI, but exhaustion is a bit much.  I’m also having headaches, my headaches have been reduced so much since I’ve been getting the Botox shots for migraines, it’s difficult when I have one every day to the extreme I’ve been having.

photo from medicinenet.com balance disorders slide show.
photo from medicinenet.com balance disorders slide show.

The vertigo has been pretty predictable lately, every evening I normally have at least a small attack, and often more than one different times in the day.  I’m handling the vertigo well, but it’s so dang annoying, and frankly it’s starting to get a bit boring.  When it’s going on all I can do is focus on one spot, often with one eye closed, and tell myself it’s not real, all while keeping my breathing deep and steady….after a while it gets boring.  Never thought I’d say that about a vertigo attack, but the attacks I’ve been having recently are not the horrible fast spinning kind that last for hours.  Sometimes I do wonder if they would be if I didn’t get the meds in me fast and start this meditation type routine that I’ve come up with.  One day last week I had very fast vertigo I couldn’t focus at all, still I calmed myself down.  It has helped so much to tell myself, “This is not real. You are not moving, This is not real.”  But everyone has different ways to cope, and some may not be able to do this.  I know I would not have been able to just a year or so ago.

I realized something the other day….I gave up.  My husband was talking to me about things that have been going on with me lately and how we needed to talk to the doctor about it and how he wanted me to feel better.  He qualified that he knows it will never go away, but it used to be better.  I shut down.  I actually bothered me to hear he wanted me better.  Then I realized it was because I didn’t believe I would get better.  Ever.  I’ve gotten tired of asking doctors about things and hearing, “I wish there was more we could do”.  I didn’t want to hear that again, so I gave up.  This sounds odd after hearing how I handle my vertigo so much better, but I don’t believe the vertigo will get better.  I used to.

Now I’m in this realization mode, and fighting with myself.  I know I can’t give up!  I have a life.  I do want to get better.  Some of my illnesses may not get better, but I know some things can.  I KNOW this. But with the loss of income, and everything else, I have put myself last….and feel guilty every time we have to spend money on me….so I gave up.  I didn’t want my illnesses to sap all of our funds and energy.  It could get better, but it may not, and I got to the point where I just didn’t want to have my hopes shattered again, especially if it was going to take more of money, simply to be told it won’t get better.  As I write this and think more and more about it, perhaps I never gave up, perhaps I felt I needed to put me on hold.  The situation we are in right now is very stressful and taking much out of both of us.  I do not feel comfortable concentrating on me, I need to concentrate on us.  (this does not mean I’m being negligent about my health, if there is something I really need to see the doctor for, I will go.)

A realtor just left the house.  Yes, it’s time to sell.  I’m afraid we’re going to lose money on the house.  The market has come back a lot in this area, but some houses in our neighborhood sold for so little, it is going to cause our selling price to be greatly reduced.  No matter where Stuart gets a job we want to downsize, hopefully, we won’t have to wonder about our future much longer.  Another phone interview for my hubby in the morning…for a job in Las Vegas.  I cannot imagine living in Las Vegas. I wonder if they have decent doctors.  : )

I realize now that I’m rambling.  Yes, I do that when I’m nervous.  I’m still grateful for so much….our life may hold many questions right now, but it’s a mystery…soon to be an adventure, and I’m sure we’ll be happy with how things turn out.  We’ll be together, and that’s all that counts.