Canceling Christmas and that’s okay.

On By WendyIn Christmas, Chronic Illness7 Comments

Today we are officially canceling Christmas dinner. We were supposed to be hosting dinner for the family at our house this Saturday night, but plans needed to be changed because of my health. It was hard for me to admit it at first, but finally I realized, even if, by some miracle, I could get it all done, I would not be well enough to enjoy it. The probability that I’d end up in bed during the whole thing was high. So, as I prepared to have a “talk” about cancelling Christmas with Stuart, he proceeded to tell me that he felt we needed to do so. So glad we are a team.

For years now we’ve worked at making Christmas our own. We stepped back from the hustle and bustle and spent time together doing our special things. This year, we are in much closer proximity to his family and I really wanted to do something special for his dad, so Christmas dinner was planned. Then I got sicker and sicker with a UTI and more, and suddenly this Christmas started to feel like an albatross around my neck. I desperately wanted it, but my health simply did not agree, and I’ve come to understand that it’s perfectly okay to cancel plans when you need to. If anyone is disappointed or upset because of this change of plans, then I’m not sure I’d want them at my house anyway. (We are going to try to do the dinner on the 29th, but if I can’t, I can’t. Playing that one by ear.)

I feel like this whole experience has made me get back to my mindfulness practice, and Buddhist studies (I consider myself Buddhist inspired). Letting go of the plans for Christmas, not focusing on what may be with my health, just living life moment to moment as best I can, that is where I like to be, I feel like I lost that somewhere along the way.

Mala Beads.

For the past year I’ve had this bracelet that helps you meditate, it is based on Mala beads, but on a much smaller scale. Mine has 21 beads, where a true Mala has 108. Mala beads are used to count mantras when meditating, I think if it kind of like a Rosary. I have used mine at times when I have a few moments to meditate, I simply hold a bead between my fingers and take a deep breath in and out and then move on to the next bead. Sometimes I’ll focus on counting, or a single word or phrase. It has helped me with anxiety and being centered. I realized just how much I had gotten away from my mindfulness practice when I stopped using my beads. Recently I had a mammogram and I had to take my jewelry off, I had almost everything off already, Stuart was holding it for me, but I had my beads on. I had to take them off, so I put them with my clothes. When I got home I realized I didn’t have my beads. They are very inexpensive and don’t look like much, so no one would have saved it. I was devastated. I had just started using it again and it was helping me through this tough time, and suddenly it was gone. I ordered a new one, but it was different. It didn’t feel right. This week Stuart surprised me with a new one just like my old one. I will be using it often now, I’m so very glad I found this way of simply letting the world go for a little bit. I often get anxious when meditating because I can’t tell how much time has passed, by counting my beads, I have a know that completing one round is a good amount of time, I used to be afraid I’d look at the clock and only a minute had passed, this is a perfect solution.

Another tool I’ve used for a long time that I’m using more often now is chanting. This is not for everyone, some find it much more religiously centered. I don’t really. I do try to practice the Buddha’s teachings, but I don’t feel I really know enough to call myself a Buddhist. I try not to talk about religion on my blog, I respect one and all. I feel we all have the same basic beliefs, we want to be happy and want the same for others. In other words, do good and good comes back to you. I think you should do good no matter what, but again, I’m getting off subject. (and at this time in I’m not sure how many people agree with any of that)

About the chanting. I learned a chant when I was taking yoga, many moons ago, and it stuck with me. Whenever I have a bad spell Stuart and I will chant this chant.

Oṃ bhūr bhuvaḥ svaḥ

tát savitúr váreṇyaṃ

bhárgo devásya dhīmahi

dhíyo yó naḥ pracodáyāt

Translation:

 (O) Supreme one; (who is) the physical, astral (and) causal worlds (himself).

 (you are) the source of all, deserving all worship

 (O) radiant, divine one; (we) meditate (upon you)

Propel our Intellect (towards liberation or freedom)

I can’t really remember how to pronounce the last two stanzas, but we know the first two by heart and I find them very comforting when I’m in a lot a pain, or having vertigo so very bad. It doesn’t really matter to me what the meaning is, it’s the chant itself that helps. When in pain I chant this and sway back and forth, it honestly helps. Since I had the akathesia side effects last Spring I rock myself to sleep. I simply cannot be still. Since I’ve been so sick, I find myself repeating this mantra every night. That or the Lord’s prayer, which is kind of funny to me.

The next 2 paragraphs are all about my current health condition, feel free to skip it, but if you are interested, here goes:

As many of you will know from my previous post, I’ve been fighting a UTI since late November. I’ve been through 3 rounds of antibiotics and I had another infection from a cyst removal on my scalp that still hasn’t healed. (that procedure was done the third week of November, over a month now). You may also recall that I’ve been going through a Bipolar mixed stated mania phase, and had to change my medication a couple of times. Yesterday I saw the doctor again. I was running a fever, but not incredibly high. My pulse and BP were a little high, nothing worrisome. I have been having severe stomach pain with retching (very little vomiting, just heaving horribly) and the nausea has been so severe, I just can’t express that feeling. My bladder and back still hurt. She also checked my wound and it is still draining, but it’s yellow now. ewww. She’s a little concerned about the possibility of sepsis, since I have infections in 2 places that haven’t healed, but I don’t have that high of a temperature and I should be either vomiting or having diarrhea, and I’m having neither. I’m had my blood drawn just in case. I also had a urninalisis, so far it shows that my UTI is clearing, but I have blood in my urine, so I go to have a kidney/bladder ultrasound tomorrow morning. (At 11:30 in the morning, after no food or drink for 8 hours then drinking at least 32 oz of water before the test without peeing. Talk about torture.)

She thinks this has all probably been caused by adding too many medications at one time and they didn’t play nice together. Stopping the antibiotics will hopefully set it straight. Of course, that wouldn’t explain the blood in my urine, but why worry, it is what it is.

*the first image was created using imgflip.com the second image comes from https://chopra.com/articles/the-benefits-and-uses-of-mala-beads I believe each are open source photos.

Mindfulness Monday: pain

On By LorraineIn Mindfulness, Pain, Quotes2 Comments

“Healing is an art. It takes time. It takes practice. It takes love.”

Maza Dohta

Being present, being in the moment can be difficult when in physical pain. To transcend that barrier; to be aware of breath and heartbeat over the noise of pain synapses. When the levels of my physical pain increase, as they have of late, I struggle to own my pain, rather than it owning me.

Helping Wendy with Mindfulness Mondays is therapeutic; choosing a topic; searching out the quotes; formulating the post – all help me focus, to remember to breath.

I hope this week’s Mindfulness Monday quotes help you be mindful of the pain and of the moment.

“Some people think that to be strong is to never feel pain. In reality, the strongest people are the ones who feel it, understand it, accept it.”

Anon

“Mindfulness can play a big role in transforming our experience with pain and other difficulties; it allows us to recognize the authenticity of the distress and yet not be overwhelmed by it.”

Susan Salzburg

“Chronic pain or other challenges are invitations; gifts that challenge us to learn how to manage the mind.”

Cheryl Richardson

image: (c) Lorraine

 

Cochlear Implants Are Different

On By WendyIn Chronic Illness, hearing loss7 Comments

Most of us have seen the videos of a someone who has been deaf their whole life who  receives a cochlear implant and can suddenly hear. (or maybe people just send those to me)  The wonder on the their face is very touching and can be described as miraculous.  I will not get into the debate over whether or not a child, a person who has been deaf since birth, or a person who has lost their hearing should be implanted, that is a very personal decision that I have no right to weigh in on.

I do want to talk about how not everyone with a cochlear implant hears the same.   Recently I read an article that talked about having a cochlear implant, the person writing the article has been deaf his whole life, does not have a cochlear implant, and has chosen not to get one, I respect that decision.  Many of the commentors did not.  The comments on that article were argumentative and down right rude.  I found it very interesting, and a bit disturbing, that so many people assume that the experience they have with their cochlear implant is the same experience everyone would have. That simply is not true.

Yes, it is a miraculous thing to suddenly be able to hear.  (for some for the first time, for others to hear again, like me.)  The thing is, we have no idea what those people are hearing.  It could be words, or it could be clicks and whistles or a combination of many sounds.  If you never heard a sound before, would your face not show amazement?  We cannot judge what they are hearing by a simple video.  My audiologist told me that they she cannot understand what I hear, because she doesn’t have a cochlear implant and if she did, it could be totally different.  Some people who only hear little bits might be able to hear more later, some will not.  I met a lady at the Hearing Loss Association meeting who has cochlear implants and she can hear very little.  She cannot hear speech.  Her cochlear implants allow her to hear emergency signals, and not much else.  I am amazed at how well she gets by with reading lips, but she does get lost, and I do wonder how much she misses.  Often she simply smiles and nods, something I find myself doing way too often.  But she is very grateful for the hearing she has. I can’t imagine.  There are some people who hear almost as well as a normal hearing person, I can’t imagine that one either. 

So many people assume that cochlear implants are like hearing aids,  They are not!  Hearing aids amplify sound, but the person can still hear the way they are supposed to, just not as well.  In other words, no one had to implant something in their head to help them hear sounds.  “a cochlear implant bypasses damaged portions of the ear to deliver sound signals to the auditory (hearing) nerve.” (WebMD)  I have a device that was surgically implanted in my head and through the cochlea of my ear to deliver sound to my brain.  I do not hear with my ears.  No matter how high I put the volume on my cochlear implants it will not improve my hearing.  I know it’s confusing, but trust me, I’ve had both, a hearing aid and a cochlear implant, they are not the same in any way.

With my hearing aids I could turn up the volume and hear, no they were not perfect, I still had trouble with wind, noisy situations….all kinds of things.  The point is that the only thing that a hearing aid can do is amplify sound, if that will help you, that’s great.  I honestly wish I could still be helped with hearing aids.  I was not deaf without them, without my cochlear implants I hear nothing.

When I started losing my hearing I asked my doctor if I should learn sign language, he said, “You will never be deaf”  I realize now that he meant that even if I lost my hearing, he would simply give me a cochlear implant.  Which he did.  In hindsight I should have learned ASL (American Sign Language) before I started needing it.  I do not believe he understands the limits of the device

My audiologist warned me that some people do not hear speech with their CI’s, some only hear arbitrary sounds (clicks, whistles…)  She told me that people who have had hearing often do better than those who have never heard.  Their brains simply do not have anything to relate the sounds to, that isn’t always the case though.  (again, I know it’s confusing, we’re just different)  I heard speech immediately, but it sounded strange.  Everyone sounded like Mickey Mouse, luckily I like the Mouse, but it did get a bit annoying.  Gradually I began to hear people the way I remembered they sounded.  It’s a little funny that still sometimes when I meet someone new they will sound a bit like a cartoon.  And do not ever ask me to understand an accent.  

In the comments connected to this article people talked about how they could talk on the phone, play music, go to plays….and they spoke of them as if everyone with a cochlear implant can do those things.  I can’t.  I cannot talk on the phone, and those caption phones are a joke.  They don’t keep up with the caller and they get a lot of stuff wrong.  It’s more annoying than simply saying, “I can’t do it”  and that’s sad.  I miss music.  I miss music so much.  I am literally tearing up just writing those words.  I sing often, but I can’t remember the words to many of the songs, so I make them up.  I want to be playing carols this time of year, but alas it will not be.  I can’t hear it.  I can hear the melody, but the words, nope.  And that makes it just sound garbled.  I do so miss music.  I have been able to go to the movies thanks to the caption boxes, but it is difficult.  There is one theater close to me that is looped, (A  hearing loop (sometimes called an audio induction loop) is a special type of sound system for use by people with hearing aids and cochlear implants. The hearing loop provides a magnetic, wireless signal that is picked up by the hearing device when it is set to ‘T’ (Telecoil) setting.)  So the sound is piped right in my ears.  You would think this would be perfect, but it’s not, I still needed the caption box, but I didn’t use it near as much.  It’s an independent theater though, so I’m still out of luck when I want to see a popular movie.  I cannot imagine going to a live event that has not captions. 

Being deaf is very isolating, even with a cochlear implant.  It’s very hard for me to go out alone, to attend a party, to take a class, go to a restaurant, or…well, so may things.  I’m lucky I have a husband who helps keep me active, and understands my fears, many people do not have this.  If you know someone with hearing loss, reach out, they need all the friends they can get who understand their challenges.

This post got to be a bit longer than I intended, but I hope I’ve helped some of you understand a little bit more about how differently those of us with cochlear implants can hear.  Just because you know me, and my struggles doesn’t mean that the next person you meet with a cochlear implant will have the same issues I do.

 

If you’d like to know more about me and my cochlear implants you might enjoy this post  What it’s like to have a cochlear implant  Just remember, it’s only my story.

*The photo above is of me with my CI taken a couple of years ago.  Yes, it really is orange

Infection – because Zombies are wussies.

On By WendyIn Chronic Illness10 Comments

2ousvb

On November 20th, I had a cyst removed from my scalp that was pressing on my cochlear implant.  I’d had another cyst, in a different area of my scalp, removed the month before without complications, so I felt I knew what to expect, I was wrong.  The cysts are made of Keratin and aren’t a big deal, but they can get rather large and I have 5 that have been bothering me for a long time.  The first one I had removed was visible through my hair…yes I know my hair is much thinner than it used to be, but it was really big.  (measured over 2cm when they took it out)  The recovery from the first removal was uncomfortable, but nothing big.  The recovery of the second cyst started out much more painful, and I still can’t wear my cochlear implant for that ear.  So I’ve been completely deaf, 100% of the time, in my right ear for over a month, and the new psychiatric medication I’m on now causes my tinnitus to increase greatly, the noise is driving me mad!  If I could wear my CI, I would at least have some sound that would help drown out this constant buzzing, chirping, chattering, NOISE!

On the Monday after Thanksgiving (November 26th) I had my annual physical.  During this visit I mentioned that my back was hurting around the kidney area and my bladder had been bothering me a little, so it might be a good idea to check my pee.  I honestly didn’t think they’d find anything.  I had strained my back, so that could explain that pain; and I have irritable bladder that flares up way too often, so these were the obvious culprits, I honestly didn’t expect anything to come of it.  The next day the doctor called to inform me that I have a UTI (Urinary Tract Infection)  They felt they caught it early, so one round of an antibiotic should knock it out.  Sounded like a plan to me.

A week later, I was finishing up my antibiotics and I was in much more pain than I was in before I started them.  Off to the doctor for another urine sample, and it came back positive, I still had a UTI, but it was worse.  So I started Cipro.

During all of this the wound from the cyst removal had swollen three times the size of the original cyst and was getting red.  I was getting concerned, but I was scheduled for another cyst to be removed so I thought I’d just ask then.  But on the day I was supposed to go, my fever was too high and I was having vertigo, so we canceled the procedure and scheduled a wound check.  The night before the appointment the wound started to weep.  It was gross.  I reached up and touched the area and thought, “hey, it’s gone down some”, then I noticed my hand was all wet and gooey.  Ewww.  Off we went to have my wound checked and yes, it’s infected too.  I had one day left on Cipro, but I had to start a Zpack of the new antibiotic because it works better on this type of infection.

That brings us to yesterday, when I was just finishing the Cipro, and my bladder and kidneys still hurt.  I’ve also been running a low grade fever for weeks.  I started yet another antibiotic today!  Yes, this is the THIRD antibiotic I’ve been put on over the last month.  I can’t tell you the last time I needed an antibiotic, and suddenly I have to be on three?  Wow.  Mind officially blown.

One thing though, I don’t think zombies would be brave enough to touch me.

Monday Musings on Bipolar Disorder

On By WendyIn Chronic Illness4 Comments

Once again, I’m stepping away from the normal Mindfulness Monday format.  As many of you know, I’ve been going through a psychiatric crisis due to a bipolar mixed episode.  At this time, I am beginning to see the light.  I won’t say I’m “stable” yet, but I haven’t had the intense rage for a few days now.  Stuart even said to me that he thinks my new medication is working because I spilled something oily all over my shirt and didn’t completely lose it.  I was actually very calm, I simply took the shirt off, got some other clothes together and threw them in the wash.  HA…I just remembered, they are still in the washer!  Hope I remember to put them in the dryer in the morning.  LOL

As I looked for quotes that showed hope at surviving with bipolar disorder, I was amazed at how many focused on the use of Lithium, and other medications. I’m the first to admit that I take medication for my illness, just as I would for any other illness, but it is not a cure all. We can’t just take a pill and suddenly be a “normal” person. It takes a lot of hard work, and we must be on guard for the rest of our lives to try to keep our moods in check. By “in check” I do not mean stifled, I simply mean, not exploding to the extremes that can cause me or others danger. I would never want to lose me, in all of this. I am a beautifully complex woman who feels deeply. It has been said that I’m “too sensitive”, to that I wonder, do they not feel the joy and sadness in the world? I do, and I’m glad I do. But I digress, the quotes that act as if you can just take your medication and will be well, they are simply ignorant of the total picture. Not only do the people who respond well to medication also have to work hard, there are many people who are medication resistant. No matter how much medication they take, no matter what drug they are given, they will never be free of their mood disorder. This is not addressed enough. I am very grateful that we seemed to have found a combination of medications that are working for me. But we must all be aware that just because someone suffers it does not mean they aren’t taking their medication, or that they refuse treatment, often they have no choice. I’ll try to talk more about that in an upcoming post. For now, I hope you enjoy these quotes by people you might recognized who also have bipolar disorder.


“Though I am often in the depths of misery, there is still calmness, pure harmony and music inside me.”

~Vincent Van Gogh (Dutch Painter)

“I think when people refer to me as being bipolar, it’s something that is true—I am bipolar—but I don’t like people to use it as a label. It’s something that I have, it’s not who I am.”

~Demi Lavato (American Singer/Songwriter)

“You can have manic-depression without having an ounce of creativity”.
– PATTY DUKE (American Actress )

Bipolar disorder can be a great teacher. It’s a challenge, but it can set you up to be able to do almost anything else in your life.

– CARRIE FISHER (American Actress)

“Even when I’m in a really great, steady and stable place…I’m clinically bipolar, so that always exists – a darkness always exists.”

~Mary Lambert (American Singer/Songwriter)

Mindful Monday – Mental Illness

On By WendyIn Bipolar, Chronic Illness, Invisable Illness, Mental Health, Mindfulness14 Comments

Today’s Mindfulness Monday is not really quotes on mindfulness, they are mindful quotes on mental health.  There are more quotes than usual, I actually found over 30 that I liked and finally cut it down to these 7.  After each quote I will explain why I chose that particular quote.  I hope you will bare with me, as most of you know I’m working through a mental health crisis of my own, and working on this post has helped me feel not so alone.  ***Please note that this post contains a frank discussion on mental health issues including suicide ideation.

“Beautiful fake smile.

All it takes is a beautiful fake smile

 to hide an injured soul and

they will never notice how broken you really are.”

~Robin Williams

I chose this quote because we I often use a fake smile to get through the day.  Whether it be because of my physical or mental illnesses, that fake smile makes others believe I’m okay, and that makes dealing with the general public, and sometimes even those closest to me, easier.  I don’t have to explain, I don’t have to deal with the awkwardness…..the fake smile, is a shield I use to deflect the judgments from others.  

“Be proud of every step

you take towards stability,

no matter how big or small.”

~Jessica AnnHardy

I have been feeling like all the work I’ve been doing to overcome this crisis has shown little improvement.  I chose this quote because it reminded me that even the smallest steps toward my stability are worth being proud of.

“I’m still me no matter

my mental health”

~Niki McBain

Earlier today I texted a friend how afraid I am that this is my new normal, all the anger, and simply being a bitch all the time.  I’m no longer a nice person.  I told her, “I feel like I’ve lost Wendy”  I chose this quote simply because it reassured me that Wendy is still in there somewhere.

“It’s exhausting to fight a war

inside your head

every single day.”

~Mickie Ann

If you don’t have a mental illness I don’t think you can ever understand this quote, if you do, I doubt I have to explain why I included it.  This constant battle going on in my head is driving me insane….or perhaps I’m insane is why I have the battle in the first place….these are the kind of questions that bombard me all the time lately.  Every… Single….Day

“Surviving a psychiatric crisis is one thing.

Overcoming one is something completely different.”

~Chris Curry

I hope to somehow understand this, and hopefully so will my husband.  Right now we are in survival mode, overcoming it is going to be a long, hard process.  (I’m not sure it will ever happen completely)

“The bravest thing I ever did

was continuing my life

when I wanted to die.”

~Juliette Lewis

Okay, I’m admitting something here so other’s my hear my pain, and will perhaps not feel so alone.  Each day since this crisis began has been a fight for my life.  More than once I’ve thought it would be best if I were not here.  I’m not being selfish, of looking for the easy way out.  I’m hurting the person I love most, over, and over, and over again.  When I’m having the most severe emotions, rage, despair….and the psychosis (auditory hallucinations)  I cannot see that removing myself from this world would hurt him worse, I can only see that I’m causing him so much pain, and at that moment I believe that if I’m wasn’t here it would be better for him…and others I love.  I want to remove myself from the situation.  Actually, that’s exactly it, I am simply trying my hardest to get away from the war inside me, I simply need to escape.  The pain is just too great.  Please do not judge me, if you do, keep it to yourself, my psyche can’t handle it right now.  I am not in danger, my husband and my psychiatrist know about this and I’m being watched….like a child….I hate it.

”You know when you’re in a bad dream

and you’re trying to run, punch, kick, or scream,

 and your body just won’t move?

You open your mouth and nothing comes out.

You feel frozen or in slow motion,

 and no matter how hard you try to fight it,

nothing changes.

That’s how it feels to battle mental illness.”

~Evyenia

When I read this quote I thought….Yes!!  It is often like that.  I feel like I scream and scream and even when I’m making noise it makes no sense.  I’m stuck, I can’t get out.  I just want me back again!  There are so many people who feel like they aren’t themselves after they start their psychiatric medication, especially those who are bipolar I, like me.  I will admit, when I first started my meds I wondered if the changes in my moods were making me less….me.  I was losing part of who I identified as me, but after I was stable for a while I realized that the real me was the stable person.  I no longer had times of extreme mood swings, I no longer did so many dangerous things, I felt more in control.  Yes, I missed being able to pain for days on end, I don’t feel I’ve been as creative, and I miss the times I could read 2-3 books in one day, but I don’t miss buying a car I couldn’t afford, or having sex with someone and not remembering it, or losing days that I don’t remember.  That wasn’t me.  When I’d relapse, which has never been as bad as this crisis, I’d run to my doctor immediately for help.  I didn’t like that feeling at all, I was suddenly not me.  And suddenly after 20+ years, I’m having a severe crisis.  It scares the hell out of me.  I will say, I think I’m better today than I was 2 weeks ago, but I still have a long way to go.

I just want to be Wendy again.

***by the way, the photo above is a self portrait I took a few years ago.  I haven’t been in the mood to take many pictures lately, and I felt this photo was appropriate.  (all right’s reserved)

A Really Long Update

On By WendyIn Bipolar, Chronic Illness, Meniere's Disease14 Comments
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

Mindfulness Monday: #GivingTuesday

On By LorraineIn Mindfulness, Quotes3 Comments

“Those who bring sunshine to the lives of others cannot keep it from themselves.”

J.M. Barrie

“. . . It’s a beautiful dance, this giving and receiving!”

Heather Powers “Grateful Girl”

“The true meaning of life is to plant trees, under who shade you do not expect to sit.”

Nelson Henderson

Tomorrow, Tuesday November 27, is #GivingTuesday (Giving Tuesday) — the first Tuesday after American Thanksgiving.

“#GivingTuesday is a global day of giving fueled by the power of social media and collaboration.  . . . One of the best ways to get involved is in your own community. . . join the movement and give – whether it’s some of your time, a donation, gift or the power of your voice in your local community.” #GivingTuesday

I am grateful to Wendy for her friendship, compassion, caring, and the chance to participate in Mindfulness Mondays.

Tomorrow, I will give some of myself.

And, just because:

. . . With an open smile and with open doors

I bid you welcome, what is mine is yours

With a glass raised to toast your health

And a promise to share the wealth . . .

Stop and look around you

The glory that you see

Is born again each day

Don’t let it slip away

How precious life can be

With a heart that is wide awake

. . . with a thankful heart

“Thankful Heart,” Paul Williams, A Muppet Christmas Carol

 

Mindfulness Monday: calmness

On By LorraineIn Guest Post, Mindfulness, Quotes3 Comments

“Calm the winds of your thoughts, and there will be no waves on the ocean of your mind.”

Remez Sassoon

“Meditation is not a way of making your mind quiet, it is a way of entering into the quiet that is already there – buried under the 50,000 thoughts the average person thinks every day.”

 Deepak Chopra

“Empty your mind of everything – let the mind become still.”

Lao Tzu

I create personalized “mindfulness” or “grounding” cards. On different coloured index cards, I print out a quote; a saying; a thought gleaned from elsewhere, or sometimes from somewhere inside me.

I carry two with me . . . always.

The first is a grounding exercise to use when I have a panxiety attack, feel like I’m drifting too far from shore, or to help be mindful of my surroundings by using all my senses. *

The other:

“Calm as a koi pond.”

Lorraine

* Borrowed from the “web of thoughts.” Can be modified to suit a person’s abilities and needs; I took the whole.

Look around you and find:

FIVE things you can SEE

FOUR things you can TOUCH

THREE things you can HEAR

TWO things you can SMELL

ONE thing you can TASTE

And, Wendy (who is taking a break from Mindfulness Monday today) gave me a wonderful set of 65 Power Thought Cards, beautifully written and richly, colorfully, and playfully illustrated by Louise Hay.

On one side is a saying; the reverse is a longer meditation on that specific thought/phrase/concept.

I carry around two:

“I am willing to change.”

“I express my creativity.”

Thanks to Wendy, (and Mindfulness Mondays), I am “working” on both!

image: © lorraine

Mindfully seeing

On By WendyIn Chronic Illness, Mindfulness, Quotes10 Comments

“The best way to capture moments

is to pay attention.

This is how we cultivate mindfulness.”

~Jon Kabat-Zinn

 

This week I decided to try to get back to the basics of my mindfulness practice.  When I first started learning about being mindful I would take time to really look at things up close and see all the little things about them. I tried to keep my attention on the object and discover as much as I could about it, is it smooth? bumpy? soft? scratchy? colorful? alive?…… just trying to mindfully seeing the world, one piece at a time.  At one point I took my camera and took a ton of pictures of one object, seeing it through the camera lens made me pay even more attention to it.  This week I did that same exercise.  I’d like to share some of the photos I took.  These are all objects you might see in day to day life, I just got up close and personal with them.  I’m only sharing one photo from each object I looked at instead of a ton of one item, I thought it’d be fun to see if you can guess what each object is?  **answers can be found at the bottom of this post

20181109_08550820181109_08523720181109_08521820181109_08515420181109_102757

I challenge you to go out in your world today and pay attention to the world around you, one piece at a time.

What did you see today?

 

I hope you liked this version of Mindfulness Monday.

**The photos above are of a Dust mop, a plastic bowl on my kitchen counter, the shutters in my living room, the metal grating on my front door (like a super duper screen door, but with heavy metal), and the refection of the pool shining on my ceiling dancing with the shadow of the fencing.  (I have to say the last one isn’t nearly as interesting as it is when you see it literally dancing on the ceiling.)

All photos are the sole property of W. Holcombe.  Please do not use without permission.