A Really Long Update

water droplet on sage leaf

I’ve been saying that I’m “working on a post” for a while now, but I haven’t.  I’m not sure why.  I haven’t been too busy.  I think I’ve just been avoiding talking about things.

My bipolar episode has lasted much longer than I ever anticipated.  I’ve been stable for over 20 years and suddenly I had this awful episode that left me feeling like I didn’t deserve the life I’ve built for myself. I knew if things didn’t change soon, I wouldn’t be able to carry on.  After trying to get my medication working and failing, we decided to go back old school, I’m on Lithium again.  This is the first drug I was put on when I was first diagnosed.  It worked for a very long time, but it damaged my thyroid and we decided to try something else.  Fortunately, at the time, I responded well to the alternative medication.  Since the damage to my thyroid as already happened, there is really no reason for me not to take it, and fortunately, it works really fast.  After being on it for about a week I could tell a huge difference.  I’m still having that low hum that makes me feel like I’m going to explode at any moment.  But I don’t explode, I might get angry, but I don’t have the rage I was experiencing. I just increased my dose, so I’m hopeful that anger hum will diminish soon.

That is the good news. I’m leaving out all the rage episodes, the night I was actively seeking for a treatment center to commit myself because I was very afraid I was going to harm myself or someone else, the anger I felt toward my psychiatrist because I can’t hear a word she says and I have to have my husband in there to help me.  At this last appointment I was so distraught by everything I couldn’t really talk at all, he had to tell her everything.  Before we left I asked where I should go if I were in crisis, she asked if I felt suicidal, I told her how I had been feeling, she simply told me which facility I should go to, but I didn’t feel like she took me seriously.  Perhaps I’m being overly sensitive and she understands that hubby will be here to monitor me and see me through this trying time. It’s very hard to get to know a doctor when you are in the throws of a  (disphoric mania) mixed stated bipolar episode.   Yes, I did say, mixed state.  I’ve only talked about the rage here, but I’ve been bouncing around from extreme anger, severe depression, and wanting to jump my husband’s bones….all in the same day. Sound a little crazy?  Yep, I felt that way too.  Thankfully, it’s calming down and I’m feeling more like myself.

Unfortunately, I can’t say the same for my health.  The vertigo, migraines, and hypoglycemia have had me pretty sick, most of the time. Last Saturday we went out to breakfast with my father-in-law, shortly after getting our food the world started to spin.  I lowered my head, took my meds,  and told them to continue.  I was sure it was going to be a quick attack and I’d be okay in just a little bit.  I might not be able to eat, but I could take it with me.  I was wrong. The spinning got worse and I was afraid I was going to vomit right therein the middle of the restaurant.  I got Stuart to get me a throw up bag from my purse and I clutched it tight.  I told him it was BAD, REALLY BAD, and I needed to go home.  I motioned for him to get the food to go.  Hey, I wanted my pancake!  I really didn’t think about how hard it would be for me to walk out.  I couldn’t focus and I felt like my body was moving in ways that my brain really wasn’t telling it to.  The sensation of  being moved from forces that no one else sees is very disturbing. I used to think I had gotten to the point that I was okay with all of this, but I really,really hate it.  I knew my feet weren’t going straight, I kept trying to compensate, that seemed to make it worse.  I clutched on to Stuart for dear life.  It was absolutely mortifying.  The only thing that would have made it worse,is if I had thrown up too.  I will say,my brain seems to deal with the episodes better than it used to, I rarely throw up anymore.  Of course, I did get a Phenergan in me at the very first sign of the attack, and as soon as we got outside Iused my vape pen that’s 4:1 CBD:THC just a little and it calmed my stomach right down.  I also never feel the psychoactive effects with this ratio.  Itis still illegal to use medicinals in public, under normal circumstances I’d never do it, but we were away from other people, and since people use those cigarette vape pens, no one knows what I’m doing. But as I said, normally, I’d never use that in public.  I thought about using an infused candy or tincture, but they simply don’t start working fast enough to help stop vomiting.  But I digress….  This was the first time my father-in-law has seen this, that was hard, but I’m relieved he does understand some of what I go through before he moves in with us.  He also handled it with grace and was very helpful to Stuart.  Not that I really noticed at the time.

I’ve had a lot of challenged with my balance this past month.  Kinda regretting buy a car, but even if I can’t drive it, it’s nice to have a convertible in the family.  I am very disappointed that I can’t drive though, having that feeling of independence was nice.  I was still having vertigo occasionally, but it didn’t last long, it was mild in intensity, and I always had signals that twas about to happen, so I wasn’t afraid to drive.  That all changed.  I accept it, but it makes me sad.

I found a new ENT and I really like his so far.  He admitted that I’ve had all the treatments that he could recommend, yep, I’ve had it all really.  He did say he could give me steroids to try to help with this flare, but since I had Avascular Necrosis that they think was caused by steroid use, I don’t use them if at all possible.  He understood.  He suggested trying Benedryl everyday because it’s a vestibular suppressant.  I never knew that.  I tried it for over a week and didn’t get the results we’d hoped for. So I asked if I could take diazepam for a week or two to try to calm itdown and he said yes.  Also, the Audiologist there called and said she isn’t as experienced working with my brand of cochlear implants so they are having the Advanced Bionics specialist come in to do the adjustment to my CI’s (mapping).  I was so very impressed with that.

I’m also working on getting a new migraine specialist, I really don’t like the guy I’ve been seeing. So cross your fingers I like the new lady.

I’ve done something that I’m afraid I may have a very hard time pulling off.  We had planned to be in our house by now and we planned to host Christmas there.  Well….I decided we still needed to do it, but man is it going to be a lot of work.  I’ve invited the whole family, and one friend. That’s 6 adults and 2 children.. 

But this is the first Christmas that Stuart’s step-mother will not be home.  I feel it’s important for his father to be surrounded by all of his family for a Christmas celebration.  We are having it on the 22nd so Dad can spend Christmas day with his wife. We have been thinking about joining them, but it’s a busy time at the home, and her daughter and her significant other will be there.  So, I think it will be good to go have dinner with her between Christmas and Thanksgiving.

I’ve been trying to make cookies, the kind you decorate all pretty with royal icing.  I decided they were WAY too sweet with the icing, since it is just a sugar cookie, so I’ve been trying to make the icing less sweet.  Problem is, as I have been working on a new recipe I have to keep tasting it.  This stuff is super sweet…cloyingly sweet.  So twice now, I’ve had a hypoglycemic crash.  Feeling dizzy, light headed, sick to my stomach….ok so none of that is new….cold sweats, shakes, stomach cramps….I even threw up.   Yep, blood sugar drop.  Now I’m not even sure I ever want to decorate cookies.  My back always hurts when I do it anyway.

Oh…other challenges this week.  I had my physical on Monday.  All my numbers were good!  Even my triglycerides, they have only been normal one other time in my life. Shockers!   However, I was having a slight pain in my kidney area and asked if she’d check my urine.  I’m so glad I did!  By the next day I was in severe pain, still am if I’m honest, and the nurse called and said that I have a UTI.  HAHAHA I found that amusing because I really had no idea when I asked for the test.  My back has been hurting so I thought it was just that, it was obvious the next day that is wasn’t.  So now I’m taking antibiotics…eww.  Can you imagine how much worse it would have gotten if I had needed to go back to the doctor for a test?  Phew!  that was lucky.

I also got a pneumonia vaccine, I had to have one when I got my cochlear implants, and I was supposed to get a booster in a few years, I’m about a year late, but I got it done. (it is supposed to reduce the chance of meningitis)   1% of the people who get this vaccine have a reaction to it.  Yes, I am that special!  The injection site swelled up and turned read.  It measured about 3” in diameter, and it was so painful.  If I moved my arm a very sharp pain would shoot through, not as if the muscle was sore, a very sharp pain.  I couldn’t lie on that side for over 3 days.  Finally it is feeling almost back to normal.   Golly, that was an experience.

There I think I’ve caught you up on all things Wendy for now.

I hope you are having a joyful holiday season.  Try not to overdo, as you can see I probably am…..big dummy.  😊

*photo, “Water Droplet on Sage Leaf” taken by W. Holcombe.  Please do not use without permission.  All rights reserved

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Mindfulness Monday – Dizzy

dizzy winter

“Looking up gives light,
although at first it makes you dizzy.”

~ Rumi

 

“I am trying so hard to live in the moment and
enjoy it while it’s happening,
because it feels like a moving freight train that I just got on,
and I’m trying not to look back and get dizzy!

~ Laura Bell Bundy

 

“To be alive is to be dizzy
and not to know exactly where to go.”

~ Ander Monson

 

*image by W. Holcombe, please do not use without permission.

 

 

It takes how long?

When you have a chronic illness chances are it’s an invisible illness, others have no idea what you have to do to get through the day.  With my illnesses some days I look sick, some days I can’t get out of the chair and you can tell, I’m sick.  Other days I can get it all together and don’t look sick at all.  It’s those days that confuse people.

I’ve learned that it takes me longer to do things than it does the average human.  There are many days that I can’t accomplish anything, but let’s not talk about those days.  I want to talk to you about the days I am able to do a few things.  The days I appear normal.

Yesterday I started to do the dishes.  The dishwasher needed to be emptied, and there were dirties that needed to go in.  For a normal person this would just take a few minutes.  I started to unload the dishwasher, I got the top unloaded and put away, then I had to rest.  I came back after a bit and started on the bottom, I put away the silverware, and needed a rest.  After about 30 minutes I went back and finished up putting away the rest of the dishes, and started loading up the dishwasher.  While loading it up I took 2 breaks.  Therefore, at the end of this it took me over 3 hours to unload and load the dishwasher.  At this point all I could do was make myself a cup of tea.  This was the end of my ability to do chores for the day.  No one would think that doing the dishes took 3 hours out of my day.  I must say that I’m okay with this.  I’m grateful I can do the dishes at all.  I only wish I could do them every day.

Last week I had an hour to take a bath before a TV show came on that I wanted to see, I thought that would be plenty of time.  Boy was I wrong.  I need to have help getting in and out of the tub because of my balance, that takes a little bit of time, but not much.  I started to take a bath as normal, a little rushed because I wanted to make sure and get out in time, but just a normal bath, then I got dizzy.  Very dizzy.  Try getting a soaking wet 135 lb woman out of the tub when she’s very dizzy, it’s just not that easy, but it’s something that happens a lot around here.  (the reason I am dirty a lot of the time 😉  Getting me in the tub, taking a bath, and getting me out of the tub, took over 2 hours.  Luckily I did have the DVR set for my show.  I know that getting dizzy in the tub is a fairly regular occurrence so I should never put a time limit on it.  But how many people do you know that can’t get a bath done in an hour?

20171028_182659

I don’t look sick.  Taken at a wedding, July 2017

Then there are days when I seem to be able to go non-stop.  Recently I had a weekend like that.  We went to a wedding a couple of weeks ago.  On the day of the wedding, I had my hair done, then I rested a little bit, then we had the wedding at 3pm.  The wedding didn’t actually get under way until about 4pm.  Luckily, I was just sitting talking with people.  After the wedding, we had the reception to attend.  On the walk over, I had a mini vertigo attack, because of my vertigo we didn’t intend to stay long and we had planned to have dinner with my sister and her husband.  Then I started seeing people I have known for over 40 years, and adrenaline took over, about 2 hours later, we were finally leaving  (know that all I did was sit and talk with people).  We went back to our hotel, changed and were off to dinner.  We were finally back to our hotel around 9pm.  I was going full out, all day long.  Boy was I beyond tired.  Not only was I exhausted from the simple physical exertion of it all, and the mini vertigo attack I had at the church, I was completely off kilter from trying so hard to hear all day.  (I did find out that my lip reading skills have improved dramatically.)  Of course, I couldn’t sleep due to painsomnia (insomnia due to pain).  There was only 1 station on the TV that would show captions (yeah, what was up with that?) so I was stuck for hours, watching something dumb, I can’t even remember what it was.  This trip was very enjoyable, I wouldn’t trade it for anything, but boy did it take a lot out of me.  It took a week or more to recover fully.  For a “normal” person they could have made the trip in one day.  It’s about a 3 hour ride (I can’t drive).  We could have gone down for the wedding and come back that night, if I were a “normal” person.  Instead we went down Friday night, so I would be well rested for Saturday, and we stayed until Sunday so I could recover as much as possible before the ride home.  I had a lot of support for this trip or I never would have been able to make it.  My neurologist (headache specialist) sent me home with a series of shots to be given over the weekend to help with migraines and cluster headaches, both of which have increased dramatically recently.   The specialist I’ve been seeing for my back called in extra meds for me for the weekend.  If these two doctors had not increased my treatment for the weekend, I would never have been able to go and enjoy myself.  I will be forever grateful.  While there my sister took me to have my hair done, she made sure I could understood everything, even though I couldn’t hear in the salon.  She then came back to our hotel and ironed hubby’s shirt.  Without this help, I don’t know if I could have made it.

To summarize: We don’t always look at bad as we feel, we often need to rest more often than what is considered “normal”, sometimes we have to have a lot of support to do things that “normal” people do without thought….and that’s okay.   We normally appreciate things much more than “normal” people.  We care deeply.  We can still live a full life, it’s just different than a “normal’s” life.  and that’s more than okay.

 

 

Stop apologizing

I don’t often reblog a post from so when I do you know the person said something I think is important.  What Denise, from Hearing Elmo talks about is important.  We have to stop apologizing for our “normal”.  Please check out her site for many more important topics, Denise is an amazing advocate.

The other day my iPhone died before I was getting ready for bed. I was a little shocked, because I rarely have it just “die” on me. The new ones have batteries that last much longer – even if you are a frequent user of the device like I am. I stood there with dead […]

via My iPhone Lasts Longer Than I do — Hearing Elmo

Update 5.10.2016

bird on handicap sign.jpg

It’s been a while since I’ve written a simple update about me.  Other than the migraine scenario.

What’s going on right this second?  My head hurts!  Yes I’m still fighting migraines.  I’m also having vertigo again, every day for the past week.  Yesterday I had it all day long!  It would go absolutely crazy, then it would slow to just barely moving, then it would go crazy again.  This went on for 12 hours.  I’m starting a regimen of steroids.  I don’t like being on steroids because they think that may be what caused the Avascular Necrosis in my hip, but I’m desperate.  My headache speicalist and my ear doctor both agree that steroids is the best thing to stop this cycle.  So here we go again.

I finished my Vestibular Rehabilitation Therapy.  It was a great experience.  I hope it did a lot of good.  I say hope because I wasn’t having much vertigo when I was going through therapy.  I was amazed at how well I progressed through the exercises.  On the last day, I had a vertigo attack start right there in the exercise room.  All I could do was hold on to Stuart and my therapist and squeak out, “I want to go home.”  A wonderful way to close out an otherwise great experience.  Since that last appointment I haven’t been able to do any of the exercises without falling.  I’m sad and pissed.

I’ve decided not to do the gentimicin injections.  There are so many risk.  When I’m at my worst I will think I don’t care about the risk, I’m willing to try anything, but I just went through a month of very little vertigo.  If I have the gentimicin injections I may never have good days.  I might not be able to learn how to balance without my ears.  And it does nothing to stop the vertigo caused by migraines.  What if most of my vertigo is migraine related?  I would still have vertigo and have to fight having no balance system in my ears.

My new ear doctor is thinking about trying steroid injections in my ears to see if it helps. (one ear at a time) But we will wait until I’m really bad again.  (If things keep up like this past week, we’ll be talking about this fairly soon.)  Steroid injections don’t carry the risk that gentimicin does.  It wears off, so if it works it often has to be repeated every 3 months. Since they think my Menerie’s is autoimmune, this is a good diagnostic tool, and if it makes me feel better, great.  Therefore, this is a good thing to try before deciding on gentimicin.  My new doctor is not a fan of gentimicin, but did not say he wouldn’t rule it out as a very last resort.

I’m sad right now.  Things aren’t going well.  Too many times I feel I’m saying, “I’m having a bad day.”  There have been days I’ve been so angry I felt like I didn’t know myself.  For the first time in a long time, I feel handicapped.  I hope all of this is part of my health not doing well, added stress and maybe menopause.  Not my bipolar medication taking a nose dive.  We’ll have to wait and see.

I have a couple of questions for those of you who have seen a naturopath or holistic doctor; Did seeing one help you?  How did you chose which one to go to?  I’ve been thinking about seeing one to try to get my over all health better, but I have no idea how to figure out who to pick.

As always thank you for supporting and caring about me.

 

What’s this thing called “Vertigo” anyway?

vertigo caught in motion

me during a vertigo attack – photo by w. holcombe

There are different definitions for the word “vertigo” (noun – ver·ti·go \ˈvər-ti-ˌgō\)

Webster’s Dictionary defines vertigo as:
a feeling of dizziness caused especially by being in a very high place

1a : a sensation of motion in which the individual or the individual’s surroundings seem to whirl dizzily
1b : a dizzy confused state of mind

On American Family Physician’s site I found a great article, Dizziness: A Diagnostic Approach.  It describes all kinds of Dizziness, the different causes and treatments.

In it they describe vertigo as : (A) False sense of motion, possibly spinning sensation.

I could go on and give you different definitions, many would be a bit different from others, but the main thing they have in common, one feels as if they are in motion.

Vertigo is not just dizziness, it is a type of dizziness, just as lightheadedness, and disequilibrium are but it is more than what most people consider dizziness.

Vertigo is the sense of motion.  Most often it includes seeing a spinning sensation, it also include other feelings of motion including, a sense of falling, rising or being jerked in one direction.  These are not encountered as often as rotational vertigo. (Understanding Vertigo and What to do if you have it. – The Washington Post – 2014)

I thought I’d take this opportunity to tell you, as best I can, how vertigo feels to me.

I have rotational vertigo (seeing my surrounding spin around), and motion vertigo (I often feel like I’m moving when I’m not.  I will feel like I’m suddenly free-falling, or being jerked around.)

The best way I know to describe rotational vertigo is to give you an example most people understand.  Remember when you were a kid and you used to spin around and around until you fell down seeing the world spin around you, (if you don’t remember this, or have a loved one with vertigo, I encourage you to do it now to have a sample of what we see).  Now that you have that image, imagine seeing that but it doesn’t stop.  When you just spin around the spinning sensation stops in a few seconds, for me it can last a few minutes to a few days.  The average is about 4 hours.  When I have this type of vertigo attack I often get very sick.  Imagine motion sickness times 1000.  I will throw up for hours, it can get so violent that I will lose control of every bodily function.  It is horrific.

I used to have other motion vertigo every once in a while, now it comes much more often.  I often feel like I’m in motion when I’m not.  I’ll feel like I’m on a boat, I’ll even feel like I’m walking around while I’m sitting still.  In the past year I’ve started having vertigo that makes me feel like I’m being thrown around the room (the first time this happened I thought I was dying, after an Ambulance ride and spending over 9 hours in the Emergency Room I was told this is a different form of vertigo.  (freaky)  I’ve also started having feelings as if I’m free-falling, I can only imagine it’s how one would feel if they stepped into an open elevator shaft.  This is one of the most frightening things in I’ve encountered.

Rotational Vertigo is not always at the same speed.  Sometimes I see my surroundings spinning by in just a blur, during these attacks I always get sick.  This will include hours of vomiting and sometimes I will lose all control of my bodily functions.  It’s horrific.  Other times my surrounds will spin by at a much slower rate.  After having rotational vertigo for so long many of my attacks are not as horrific.  I don’t panic now.  I will stay as calm as possible and just watch the world spin by, mostly I’m really bored.  This is the time when my mindfulness practice really comes in handy.

I’ve learned if I focus on something about 12 – 18 inches from me I often don’t see things go by quite as fast.  If the spinning isn’t too fast I will watch TV reading the captions.  For some reason if I concentrate on the captions the vertigo slows down.  This does not happen if I try to read anything else, that just makes me sicker.

I used to throw up no matter what.  I may have mentioned this before, maybe not, but I’ve had 2 doctors tell me that if medicinal marijuana were legal they’s prescribe it for me.  So I’ve tried it to see how it helps.  I can honestly say that I believe it has stopped me from going to the ER many times for dehydration.  It stops me from throwing up.  That is amazing to me.  I very rarely throw up now.   It can also calm down an attack if I use it fast enough.  (if you’d like to know more about how I use this to help, feel free to ask, I will say that I never feel high, I use very little, just enough to help me.)

Now, do you understand more about what Vertigo is and what my vertigo feels like?

If you suffer from vertigo, do you have similar experiences or is your experience different?

The Crud

sick cartoon

The chronically ill get sick, just like everyone else.

I have the crud.  A sniffling, sneezing, aching, coughing, stuffy-head, fever, so I can’t rest cold, and unfortunately NyQuil doen’t help.

When you have Meniere’s disease you can get really sick when there is too much fluid in your head.  I haven’t talked to anyone who has Meniere’s Disease who doesn’t have more symptoms when they have a stuffy head.  No one knows what causes the symptoms of Meniere’s one main theory is that they result from increased pressure of an abnormally large amount of endolymph (fluid) in the inner ear.  Doctor’s usually put us on a low sodium diet and often diuretics to reduce the fluid in our ears.  When anyone has a cold they have a lot of fluid building up in their head; their nose gets all stuffy, and their ears can feel full: put that in a person with Meniere’s and you have one wonky person.  Right now, I’m one of those people.

Nothing I can take can make all that fluid go away. Yes, I can take a few things to help “dry things up”. but I’m sure all of you have had a cold, and you know that no matter what you take you will feel a bit stuffy and all full in the head.

My symptoms are exacerbated.

  • My tinnitus is going crazy, as I’ve said to Stuart: “Really? You Can’t Hear That??” The noise will be so loud at times I could swear my body is vibrating with it.  Other times, the pitch is so high I will suddenly buckle over from the pain.
  • The fullness in my ears feels like there is wet cotton in there and it just keeps absorbing more and more fluid, soon it will be dripping out my ears I’m sure.  (this won’t happen unless I get a bad ear infection, it just feels like it.)
  • I feel much more dizzy and lightheaded than normal.
  • My hearing is just wrong.  I have cochlear implants, I don’t hear like other people. “Cochlear implants (CI’s) bypass damaged portions of the ear and directly stimulate the auditory nerve. Signals generated by the implant are sent by way of the auditory nerve to the brain, which recognizes the signals as sound.” NIH Publication No. 11-4798  You wouldn’t think that I would have the same problems as other people with Meniere’s concerning hearing fluctuation and sound sensitivity, but I do.  It is much worse when I have the cold, but it happens pretty much every evening, I’ll suddenly have my hearing so all funky; I can’t understand Stuart and often things sound so loud that I have to remove my CI’s.  Thankfully, I can take them off and just hear nothing, except the tinnitus that doesn’t go way, but hearing nothing can cause other problems.  When I take off my CI’s and stop hearing anything, I can get dizzier, and feel really confused.  I don’t mean I’m confused because I can’t hear, I have severe brain fog.  If I’m reading, I often can’t comprehend what I just read.  I think this is because I notice the tinnitus so much more and it is bombarding my system.  When I’m not sick, sometimes taking my CI’s off is often a pleasant sensation, to just relax in total quiet (as long as my tinnitus is being good and staying low).  I do this every day when I meditate.
  • My oscillopcia is worse. (Oscillopsica is a visual disturbance in which objects in the visual field appear to oscillate. The severity of the effect may range from a mild blurring to rapid and periodic jumping.) It can be incapacitating, luckily mine just causes me to see things weird sometimes.  I often see things as if there is this funky shadow surrounding them, like they are slightly vibrating but I can’t really see the vibration I can only see the after image after.  It’s hard to explain.  On a good day, I don’t have this, or barely have it.  Today, I’ve had to stop writing this post many times because I am having a hard time focusing. (note, not everyone with Meniere’s has oscillopcia)
  • I think everyone has a headache when they have a cold, I don’t know if mine is worse than it used be before I got Meniere’s or not, that was a long time ago.  I know it’s worse than my persistent daily headache.  I’m at a 6 or 7 on the 0 – 10 scale all the time right now.

So far I haven’t had a full blown vertigo attack.  I keep feeling like it’s coming, but it hasn’t.  I’ve been having so many good days recently maybe this cold won’t set it off.  I do constantly feel like I’m on a boat and a bit car sick, but the full rotational vertigo has not come around.

Having a cold and Meniere’s at the same time can be challenging.

If you have Meniere’s and you feel cruddy because you have the crud, you aren’t alone.  Know that it gets better.

If you don’t have Meniere’s, now you know a bit about what people with Meniere’s go through when we have a cold. Some people have more symptoms than I listed, some people have less, but normally people with Meniere’s have their symptoms increase when they have a cold.

Today I have the crud….it just is.