My Story – Being Bipolar

wendy hairOn this the last day of Mental Health Awareness Month I’ve decided to tell a little about me.  I have a story.  I feel it needs to be told.  If for no one else, this is for me.  (This is the very condensed  PG version.)

Something was wrong.  I didn’t know what it was, but I was wrong.  I was wrong inside.  I didn’t react to things the way other people did.   I knew it.  I could see how other people were different.  I was always told to be myself.  But I just wanted to be like everyone else, I didn’t understand what it meant be  “myself”.  I spent days in tears feeling like I had this black cloud over me.  At a very young age I longed for my life to end.   Other days I was flying high.  I could not control my thoughts from going everywhere, I could not control my actions, I could only follow them.  This wall all considered a natural part of growing up.  I was just a moody child, then a hormonal pre-teen, a troubled teen….  I look back and don’t know how I, or the people closest to me, survived.  There are many stories from this time that are very hard to tell.  They may come out at a different time.

My ups and downs carried on for years, and years, and years…. the older I got the worse it was.  After all when you get older your actions have many more consequences.  However, when the moods were swinging to either end, those consequences simply didn’t exist in my mind.   On the down swings I was fighting for my life, literally.  On the up swings I couldn’t rationalize things.  I couldn’t see beyond the emotions.

After a failed suicide attempt at 25, I finally started getting some mental health treatment.  I was told I suffered from Manic Depression, and was put on Lithium and an antidepressant and started seeing a therapist.  Maybe if I had just been able to stay the course that I was originally put on life would have been different, but things changed.

I was re-diagnosed a number of times.  Things changed so much over the next few years it was a constant battle of up and down trying so hard to get a grasp on reality.  The biggest mistake that was made, I was told that I did not have a mental illness, I had hypoglycemia and the fluctuating blood sugar levels were causing my mood swings. I was so relieved that I didn’t have a mental illness.  I was normal like everyone else.  I simply had to watch my diet and everything would be alright. I believed this for years and tried so hard to control everything with my diet.  If things got out of control, I would beat myself up for not following my diet strictly enough.

People couldn’t see just how bad I was because I was still able to hold down a job, even if I changed jobs frequently, I seemed normal, I was just “moody”.  I went through friends like water.  Friends I made when I was manic, couldn’t stand the depressive side, and friends I made when I was depressed, didn’t understand the up me.  Friends I made when I was in my normal state couldn’t understand my swings and they simply disappeared.

I had a job, but I also had a lot of debt.  I lost days.  There are huge gaps in my memory.  I’ve met people while I was in a normal state and had no recollection of meeting them before.  I didn’t remember men I obviously knew very well.  I did drugs.  I stayed up for days.  Risky behavior?  There were no thoughts of the risk.  Nothing could hurt me.  And if it did, so what?  In both states there was not much thought about my own safety.

Then the day came when the depression took hold so tightly I held a razor to my wrist and started to slice.  I just made the most cursory of cuts, deciding exactly the way I should do this, how deep did I have to go, how much would it hurt, how long would it take….then suddenly I thought….The Mess.  There will be such a mess and my roommate will find it. Someone will have to clean up the mess.  That thought saved my life.  That thought gave me enough pause to call a suicide hotline.  I would not tell them where I lived but I promised to go to the out patient center of the mental health department and talk.  I drove there, and when I got there I talked and told what happened that night.  I could not promise I would not harm myself if I left.  I honestly don’t know if I could have or not, but I knew I needed someone to help me.  I needed to know for sure that I could get through the next day.  I knew if I said I would not be a threat to myself or others then I would not get the help I desperately needed.

Since I was not able to say I would not harm myself I was not allowed to leave, I was told I as going to be admitted to a mental health facility.  I admit I actually felt a relief.  I suddenly felt safe, at least for the night.

The police came and took me to the hospital.  I was entered as a non-voluntary admission.  That is the only way my insurance would pay for this, but I had insurance now, this was what got me into this facility instead of the state hospital.  I had no idea the amount of debt I was about to get into.  I needed help, that is all I thought about.  I no longer cared what people thought of me, I no longer cared if this would follow me forever, I only wanted to lie down and never wake up.  I knew these thoughts had to stop, I knew if something didn’t change I would end my life, soon.

(If you would like to know more about my stay in the mental hospital please see my post: Inequality in the Mental Health System.)  The stay in the mental hospital changed my life forever.  I was there longer than I thought I would be.  The little overnight stay turned into two weeks,  but when I left I was in the mental health care system.  I had group sessions set up, I had an appointment with a new psychiatrist and therapist.  I had a new lease on life.  With another wrong diagnosis, Borderline Personality Disorder.

Soon after starting to see my new psychiatrist it was then determined that I do indeed have Bipolar I disorder.  I started being treated with Lithium and other medications again and things finally started to get on track.

It took some time to get the medication just right.  It took a lot of time in therapy.  It takes a lot of work to get things right and get better.  It takes a lot of work to keep struggling through the system.  It takes a lot of work to help yourself when there doesn’t seem to be an out.

I’m a lucky one.  I was able to find help.  I was able to get a correct diagnosis.  I was able to get a treatment plant that worked.  I’m still able to get the help I need, when I need it.  So may people are not as lucky as I am.

There are many obstacles in getting mental health care.  I fought hard to get where I am today.  I still fight hard to ensure my mental health is a priority.  I will never give up.

Too many people are fighting for mental health care and have so many obstacles in their way.  If you are one of these people, please don’t give up.  Reach out. In my experience, things don’t always go smoothly, but getting help meant my life is so much better than my life was before.

National Suicide Prevention Hotline    If you are in crisis please call.  1-800-273-TALK (8255)

American Foundation for Suicide Prevention

Mental Health Alliance (This site has a lot of useful information, including help getting care without health insurance.)
National Institute of Mental Health
Seeking Mental Health Care: Taking the First, Scary Step (this is a very useful article from Psych Central)

Mental Health Care Awareness Month is closing, but we should always be aware and working to obtain equal and affordable mental health care for everyone without stigma.

 

 

Hey Doc…What the……?

I went to the new ear doc to get the results of the vestibular testing, and I felt like I walked into the Twilight Zone.

twilight_zone
link to source

He walked in the room with his too big smile, shook my hand and told me something about the test…that didn’t make a lot of sense.  He said that it showed that I had reduced cochlea function in both ears.  That at my age he would expect it to be a 21, but my right ear is a 4 and my left is a 13.  I asked…”What does this mean?”  He said that it meant that my cochlea wasn’t working as it should in my ears…well duh.  I repeated, “Yes, but what does that cause?”  “It means you have vertigo.  And you might have this thing called Meniere’s”

WHAT??  I MIGHT HAVE WHAT?  DO YOU KNOW WHO I AM?  YOU DON’T REMEMBER ME?  YOU DIDN’T LOOK AT MY CHART BEFORE YOU CAME IN THE ROOM?

Okay, another reason that whole thing was weird….cochlea function refers to hearing.  My cochlea is not going to show up working on any test, I have cochlear implants, I have a device in my head that is coiled around my cochlea that vibrates so I can hear.  It doesn’t work on it’s own.  And the tests I were given doesn’t even test that.  But the numbers he gave me do correspond to the main test that I was given.  That was just so weird.

He also talked about a hearing test I had last February, I told him I didn’t have a hearing test last year.  He argued with me and pointed to the computer and said, that it said the tests showed my right ear had severe to profound hearing loss.  I looked at him and took off my Cochlear Implants and showed him and said, “I have Cochlear Implants, why would I get a hearing test?  However, I do have some residual hearing in my right ear, but…”  and he interrupted me and said….”That’s impossible, if you have Cochlear Implants, you can’t have any hearing…blah, blah.”  Stuart tried to explain to him that with the newest CI’s you often keep any hearing you had…he still argued.  Dang-it, I think I know if I can hear or not!  When I told him that I wouldn’t need a hearing test I saw the nurse point out to him that the date on the hearing test was not from 2015.  It was 2014, shortly after my CI surgery….of course he didn’t put that together, that I can hear out of my right ear, a little bit.  And he did not admit to us that he got the date wrong.  It’s also very sad that the audiologist that gave me the test knew that the new CI’s are often allowing people to keep some of their residual hearing, she was not surprised that I can hear a little out of my right ear.  (I want to explain, I can only hear a certain frequency, I can’t hear much.  For example, I was sleeping through the fire alarm at the hotel in December, yet Stuart said it was hurting his ears.  So it isn’t much hearing, but there is some there.)

Finally, I got tired of dealing with him.  I asked him a couple of questions, which I don’t really trust the answers to now, then I said, “So the plan is, I start Vestibular Rehab, I keep working with my migraine doc to get the migraines under control, keep up the low sodium diet, and taking the Valium twice a day.  After I go through the Vestibular rehab we will talk about the gentimiacin injections.  That’s the plan.”  Then I stuck out my hand to shake his.  In my mind he was dismissed.   He just had that plastered on smile like he had the whole time, and shook my hand and said, “That’s the plan.”

I saw no reason to spend any more time with that man. It was obvious he did not review my chart before he came in the room.  I do not understand how he could not remember me.  He told me when I saw him last time that I am the most advanced case he has seen, and how many other patients do you think he has that have been to Duke and John Hopkins?  Plus, Stuart and me together are pretty darn memorable.  I have NEVER had a doctor make me feel like they didn’t remember me.  I “might have this thing called Meniere’s”…geez…are you kidding me?  He said a number of other things that just didn’t make sense…like, “I thought you had gentimiacin and it didn’t work.” He just said that I might have Meniere’s and then he said he thought I had gentimiacin injections?  dodododo

About the tests….well he only gave me the numbers for the biggest test they did.  The Caloric Stimulation Test.  (click on the link if you want to learn about the test)  This is used to for damage to the acoustic nerve (hearing and balance) and it test the brain stem.  It is the only test that test the ears separately.  The numbers he gave me fit right in on this test.  21 is normal.  He kind of dismissed the 13, I really didn’t understand that.  Of course, the one that is really out of wack is the right ear coming in at only a 4.  So, I’m thinking when we get to the point of killing off the balance center we will do the right ear first and see if it straightens things out, or makes it so much better I don’t feel I have to do the left.

Now for the big decision, what do I do about this doctor?  I really don’t trust him enough now to let him give me a shot in my ear that will kill my balance center.  Heck I don’t trust him enough to give me a B-12 shot.

What do I do?  I can’t find another ear doctor in this whole city that knows anything about Meniere’s except for the other guy I went to who thinks he is a god.  He doesn’t listen to his patients…at least not to me, and according to his ratings on-line and on Angie’s list, he doesn’t listen to most people…he didn’t believe I have vertigo as often as I do.  Really?  Does he think I use a walker just for fun?   Ugh…..I hear stories like this from so many people with chronic illnesses, we have such a hard time finding doctors who are compassionate.  I’m lucky, most of my doctors are wonderful, but I’m having a heck of a time finding a good ear doctor since we moved.

I found an ear clinic I would like to go and check out that is close to 2 hours away from here.  I have a list of questions for Stuart to ask them on the phone before I even think about making an appointment.  If they treat people like it appears they do on their website, I think this would be a very good place to go.  They are very well versed in advanced Meniere’s, and they aren’t afraid to treat it.

As you can see, I do believe in being an advocate for myself, but I know when I can’t burn my bridges just yet.  I’m also not afraid to fire an incompetent doctor and as soon as I find a new one, I promise this doctor will know why he is being fired and I will write a review on him letting others know what I think.  The group does have a good support staff, too bad he is the only one in that group that (supposedly) knows anything about Meniere’s.

 

Why don’t they listen?

I read about this a lot, and I wonder about it myself….when we go places, especially to the doctor and we tell the staff that we need special attention to be understood, or to understand….or to walk, ect…  Why do we have to say it again, and again, and again!

image from www.someecards.com
image from http://www.someecards.com

Why don’t they listen to what we say?  It has always bothered me, even before I became as ill as I am, that first you would fill out all the paperwork stating why you are at the doctor’s office, then you have to go over it with the nurse, then again with the doctor….why don’t they just communicate?  Do they think I’m lying?  “If we ask her the same questions over and over we might get different answers.”  Just talk to each other, and listen to your patients, please.

Now that I have issues that must be addressed for me to get what I need from a doctor’s visit, it’s worse.  I try to be very understanding about people forgetting that I can’t hear, or that I have balance issues and use a walker, therefore I walk very slowly.  I realize that humans take a long time to develop habits, and most nurses and staff I see change a lot, or I don’t go to their office much, under these circumstances I do my best to pleasantly remind them, over and over, that “I can’t hear you, I need you to look me in the face so I can read your lips, and I need you to talk slowly.”  They will say they understand, but then they will look at their computer and talk instead of talking to me.  Often I will just act like they said nothing to me.  My husband will turn and tell me what they said and I will answer, “Oh, I noticed you were speaking but since you weren’t speaking to me I thought you were talking to my husband.”  I get a blank look, then a light bulb….OH yeah!  She’s deaf.  Then they do it right for a question or two, then it goes back to talking where I can not understand.  A friend of mine who writes at: Another Boomer’s Blog, says she wants a shirt that says DEAF on the front and STILL DEAF on the back!  Yep, Still Deaf.  She also has some great posts about this subject, you should really check her out, especially if you have hearing issues.

As I said, I do understand that most people are not used to dealing with people like me.  They aren’t used to dealing with the deaf, and they aren’t used to dealing with someone who has to walk slow with a walker, or suddenly sit down because of balance issues.  Yes, I have nurses try to show me to my room and just take off and leave me.  I just say, “I’ll get there sometime.”  If they turn a corner, I sometimes just stop.  When they return, I simply tell them, “I didn’t know which way to go, I couldn’t see you.”  I really don’t mean to be rude, and I am compassionate, they are used to doing their job one way, and I’m asking them to change.  However, what happened to customer service, why are people not mindful of what they are doing….everything they are doing?  If a patient comes in, you pay attention to their needs, PERIOD.  Just as you should for any person you meet. (you open a door for someone who needs it, you pick up something a child dropped…..you help people out when you see it, why doesn’t this happen all the time?  Or am I just assuming most people would treat strangers like that?)  We need to pay attention to others.  Show love and compassion, why do people often have to be the “squeaky wheel” before they are paid any attention to?

At my otologist’s office I do not accept that the staff is not trained to deal with people who are Hard of Hearing or Deaf.  When I check in, they are looking at their computer….these same people have been working with me for over 3 years, I normally check in with the same person, he knows my name, he knows my husband’s name, but he is not trained to deal with a deaf person.  He does finally understand, and he moves his mouth more clearly than the other front staff, that’s why I try to check or out with him.  But why are they not trained better?  I have one nurse who normally works with my doctor, she is a dear sweet person.  She really cares.  Sometimes she will slip up and speak while not looking at me, but she usually catches it and quickly changes.  Also, she will come and get me in the waiting room, the other nurse that calls me back occasionally, just calls out my name.  I can’t hear her!  Why does it not say in big red letters on my paperwork, DEAF….and any other instructions they may need.  Why?

I had a test performed a couple of years ago at a different hospital.  I had to check in and I was shocked at how trained the check in person was.  I don’t know if everyone there was as great as she was, but she said they all had training on how to deal with certain situations.  She spoke clearly, looked at me, marked it on my chart that I could not hear and would need assistance.  My husband was with me, but that didn’t make a difference, they treated me like I was the patient and I had needs, they didn’t treat me like my husband was supposed to pick up the slack for me.  This hospital assigned a volunteer to walk me to my testing area, to stay with me until I was called back, she escorted me to the room I was to be in and explained to the person performing the tests about the situation.  You could have blown me over with a feather!

So now, I ask why?  Why don’t people listen to us?  (no matter what your special need)  Why aren’t more people trained like the staff at the other hospital I went to?  Why aren’t we all more compassionate towards others?

Yes, people should understand when we need special arrangements so we can be less disabled and more independent.  Not only that, but we need to get the same care any other person would, that is our right.

On the other hand, we also need to give people some slack, no I don’t mean the whole rope…just help them learn.  Think about the person who is treating you this way, how have they been trained?  How hard would it be for you if you were in their place to suddenly have to do everything different from you are used to?  What if this person has just dealt with an emergency and they are still shaken up but trying to do their job without letting you see it?  There are just so many things that can contribute to why someone isn’t understanding about what we are going through.  Don’t get upset….at least not at first….realize, it’s not about you, it’s the fact that they are human and humans are not used to change, and we simply don’t get it all of the time.  Try to pleasantly remind them what you need.

My husband used to always step in and try to make things right, but I want to understand the doctor and nurses myself, I don’t want to need him to always be there….plus, I’m not sure he always remembers everything they say.  So I started telling him to be quiet unless he was asked something, or if he needed to ask or input something (he is my caregiver after all), but if he talks he will have to stand by the doctor so both of them can face me, so I can hear both of them at the same time.  No more him beside me, and the doctor in front of me. There are types of interpreters that I can request to help me at the hospital or doctor’s office, I will explain these in a later post, and why I haven’t taken advantage of them.

I have found that simply not answering, or acting like I’m lost because I can’t keep up, has helped.  Just asking again doesn’t seem to do it most of the time, but if you make it harder for the person who is learning how to deal with you, then they are more likely to change their ways faster.

Of course, some people will never learn.

and often the people closest to us are the hardest people to understand a lot of this….but that’s for another post.

Customer Service and Health Care

Doctor's Waiting Room, by CarolynYM at DeviantArt.
Doctor’s Waiting Room, by CarolynYM at DeviantArt.

Why do a lot of doctors and/or their staff think they are doing patients a favor by seeing them?  We are their customers, we are paying them, there are plenty of other doctors in the same field; we do not have just one choice!  (I do recognize that some in rural areas do often have just one choice, I grew up in an area like that.  We had to drive 2 hours for me to see an orthopedist, but still, they need to treat us with respect.)

I am so tired of going to a doctor’s office only to wait way past my appointment time, then I’m rushed through my appointment, and when I leave I feel like I wasn’t seen as a person, I was seen as dollar signs.

I have felt this way too many times.  Often, I only feel this way with the doctor’s staff.  I’ll love the doctor, but their staff is rude and inconsiderate.

I can give you many examples of this, but I will just give you 2 that have happened to me recently.  I wish I could say these were isolated events, but unfortunately they aren’t.

Recently I was looking for a new gynecologist.  The last time I went to my old GYN I had trouble with billing (during my annual visit she found something, I had to go to her office to give me a paper on it, I was subsequently sent a bill for an office visit…What?? Even if I was to be charged this, why was I not told in the office?), and feeling like she wasn’t listening to me or answering my questions.  But, this is a different story.  I asked my migraine specialist if she had a recommendation for a GYN who would work with my hormones to possibly help with my migraines, and who knows more about menopause than delivering babies.  She recommended someone who sounded perfect.  My husband made an appointment, unfortunately I was not feeling well the day before and knew I would not feel well enough the next day.  He canceled before the 24 hour required notification, and rescheduled.  The next time I woke up with a vicious migraine, and soon had an asthma attack.  No way I could make it.  Stuart called and explained, they said they understood and would not charge the late cancellation fee.  He decided to wait to make the appointment again.  In a few days he called to make an appointment, and set one up.  The person making the appointment said that they realize his wife has health problems but she really needs to make sure and keep this appointment.  Stuart wasn’t happy with this, “You can’t say you understand and then follow up with something like that.”……Then he received a call from this doctor’s office saying that the doctor would not see me.  He told Stuart that we had canceled 3 times with less than 24 hours notice.  Yes, my husband was livid.  He got off of the phone and told me about it.  He then called the office back and asked to speak to the office manager.  First, he told the person he wasn’t upset with him personally, but he was upset, so please don’t take what he was going to say personally.  (he is so thoughtful, I would have been upset with him, the man is the office manager, he needs to take care of these things.)  Stuart then complained about the way he was spoken to, and proceeded to explain that they lied.  He explained what was said, and what the truth was, and also said it wouldn’t matter now because I would not go to a doctor who allowed their staff to do such things.

Unfortunately for me, she was the only gynecologist I have found who is just a GYN and not an obstetrician too.  But I did find one who practices Integrative Medicine, and works with balancing hormones.  I will be seeing her in 2 weeks.  Let’s hope things go better at this office.

The other incident happened at my General Practitioners office.  I went to see my doctor about my asthma, I was still having a VERY hard time.  I walked in the office (with the aid of my spiffy walker) and the perfume smell hit me in the face!  I started to cough more and wheeze.  I was having a very hard time breathing.  I asked the front desk if there was somewhere else I could wait because of my asthma….I explained I couldn’t breathe with all the perfume in the waiting room…and it was obvious!  She got all snippy and said no.  So I said I would have to leave. Then she said, “well only if a room is empty” and she went to check. I felt like she took forever.  I could tell I was making people in the waiting room uncomfortable.  I had to use my inhaler 5 times just so I could catch my breath.  Then she comes out and gets me.  I was a mess, and ended up blacking out in the exam room, luckily my doctor and Stuart saw how pale I was getting and got me on the table lying down and helped me before I hit the floor.  My doctor was not happy.  (I must say that since this incident the staff there have been much more supportive.  I think my doctor said something to the front desk. Plus, I think we have been lucky to talk to staff who are much more likely to help.)  Now when I go there I wait in the hall until they can take me straight back.  Luckily, my doctor is in a building that has a huge hallway.

Do others notice that you get poor customer service from the health care industry?

Yes, I have had some awesome care, and awesome customer service.  I have some nurses and doctors that make me feel like family.  But, it amazes me how many times I’ve gone to a doctor and felt like I wasn’t wanted there….that I was a bother.  (once I actually had a doctor, who I was referred to, ask me why I was there???  Ummm, because my doctor told me I needed to come see you.  This was after she left me in the room with the door open and talked to a friend in the hall for half an hour.  She left a lasting impression on me, and not a good one.  I’m often very nervous now about going to a specialist now, thinking they may wonder….why am I there?  I’ve never been so embarrassed or pissed off (well I’ve probably been that pissed off, but boy was I ticked, and for some odd reason, my feelings were really hurt.)

Please note, I do understand that the staff at many doctor’s offices deal with a lot of strife, but every patient is different and should be treated that way.  I’ve worked in customer service, and I would be ashamed if I treated anyone the way I have been treated at some health care provider’s offices.