Stop Talking!!

I can’t stop talking. I talk on the time!

I’m driving myself crazy and I’m sure I’m driving Stuart crazy.

During the day I talk to KIki (our dog) a lot. I think she likes, but how would I know? Lately I’ve been trying to figure out why I talk so much and how I can stop. I’m trying hard to notice and stay silent, but I tell Stuart everything that’s going on even if it’s not the slightest bit important. For example, just now I showed him a pdf that was a page that listed everything that is recyclable here, and told him I printed it and taped it by the bin. That was good, he’s been looking for that, I should have just stopped there. Then I started pointing out that the page had a blue background because our recycling bins are blue and it says to “Use the Blue”, I went on to say, however, the one I printed out is not blue because our printer only prints in black and white. All of this transpired while he was trying to read. How he gets any reading done I have no idea.

That is just a tiny example.

If I’m not talking I’m often slightly moving my lips because I’m actually talking in my head, but unlike most people I feel the need to say it out loud. A couple of months ago this actually got worse because of the mania, and I really noticed it then. I talked more and very, very fast. Now I’m back to my normal speech, but I’m really noticing how much I TALK! When did this start? I haven’t always been like this. What on earth prompted it?

Well I have a few theories.

When I first started losing my hearing I realized that I would often talk over people, I realized then it was for two reasons. One I couldn’t hear everything they said so I often didn’t realized they were still talking. (I wasn’t very good at reading lips, or even noticing that they were still moving….duh). I made a conscious effort to get better at that and I think I have. When I’m with others, like going to breakfast every Sunday with Stuart’s father, I don’t talk over anyone. I try very hard to understand what is being said and add to the conversation when appropriate. (hand patting back, I got that at least).

Another theory is, when I first got sick and for a long time after that, Stuart worked from home. Even at his last job he worked from home a lot. Here, he is gone all day, I’m alone and basically have no contact with people; especially when I’m having a flare and can’t drive or get out at all. I’m often texting, but that’s different. (I probably do that too much too) So when Stuart gets home he is bombarded with everything I’ve been thinking all day and everything that is happening since he’s been home. I have noticed when I’ve been in silence for hours and I suddenly see someone, like when Stuart gets home from work, I can’t understand much at all. His voice sounds all garbled and tinny. That’s just weird to me. I normally have the TV on all day trying to hear something so I’m not hit by that, but even with that noise going I still get bombarded by this garbled speech when I first see someone. Is that one reason I talk? So I won’t hear that?

I used to get so mad at him because he didn’t hear what I said. He would be watching a show or reading and just not hear, after all, he didn’t know if it was important or not. How could he, I talked all the dang time. Recently we made a pact that if we need the other to pay attention, we would let them know and ask them to stop what they are doing and pay attention., but other than that, I could just ramble, if he hears it, that’s okay, if not, no worries. I really want to stop talking so much.

In Buddhist teaching we find that talking all the time or for too long is a form of selfishness, while being easy to talk to shows respect, generosity, and courtesy toward others. Buddha saw being easy to talk to as an expression of love (Sn.143*). Listening is a virtue, not talking all the time.

So how to I stop this constant chatter? First I think I should meditate more, I’ve lost that practice along the way, not that I ever did it much. Practicing to sit still in silence has to be good for this person who can’t be silent. I know I won’t be able to silence the chattering monkey mind for a very long time, but if I can just keep my mouth shut for a while, that would be a big step forward. Perhaps I can remember the Buddha’s teaching each time I start to ramble. I shall also try hard to listen more, how can I be listening if I can’t stop talking. Of course there aren’t many people around for me to listen to, and often when I try I can’t understand what they say anyway…..part of the problem huh? I have noticed when I’ve been in silence for hours and I suddenly see someone, like when Stuart gets home from work, I can’t understand much at all. His voice sounds all garbled and tinny. That’s just weird to me. I normally have the TV on all day trying to hear something so I’m not hit by that, but even when that noise going I still get bombarded by this garbled speech when I first see someone. Is that one reason I talk? So I won’t hear that?

If all else fails, I can always tape my mouth shut…that will teach me!

**Everyone should read the comment by Kara, it is a wonderful contribution to this post. Don’t wait, go there now!

*Sutta Nipāta, ed. D. Andersen, H. Smith, PTS London 1913

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Playing Keep Away with Medication

I’m so fed up.

An article found in the American Council of Society and Health gives “A Brief History Of The Opioid Epidemic” it list what has transpired since the mid-90’s that gets us to the point we are now. Number 6 is the most important “Deaths from prescription opioids alone are rare”. Yet this is what has been attacked. People are killing themselves now because they can’t get their medication to help relieve their pain. I do acknowledge that opioids were over prescribed for a while, the article explained some of that reason. I remember getting prescriptions from multiple doctors, being told to fill them if I needed them. Often I didn’t, but I can see where that could fall into the wrong hands, and that was the biggest problem, they often ended up in the wrong hands. However, this does not mean you should stop prescribing, or drastically reducing, medication to those who DO NEED IT. People are now killing themselves because they have no hope of pain relief. That is a travesty. We as a nation should not be letting this happen. We as human-beings should not be letting this happen.

image by pixabay.com

Caz wrote on Invisibly Me this week that she was not able to get her regular B-12 shot because they are cracking down on it due to
 the ‘craze’ of ‘fashionable B12 injections’ celebrities touting. Really? B-12?!? What does this say about us, we keep people who need a vitamin away from them because of a fad? Jump over to her blog and read her story, it is eye opening.

If it’s not the government it’s the doctors keeping us from our medication.

In my case it’s my migraine doctor (or insurance company, I’m not sure which yet). I had to find a new migraine specialist when I moved to Tucson. I made the appointment before we even moved. I’ve seen him 3 times so far, each time I’ve had issues with him.

During my initial visit he told me he didn’t believe I had every type of headache I have been diagnosed with, until I said, “I don’t know, that’s what they told me at Duke”, then he changed his tune (he also seemed to check over everything with Stuart, to make sure he agreed with that I said, like I would make this up?) My second visit was Botox, which I didn’t really want, but he wouldn’t prescribe the new headache prevention medications until I tried it, at that visit he boasted he could do the injections in less than 2 minutes (very professional there huh?). The third visit was a Botox follow-up, we were interrupted so they could ask if he would see someone who arrived late, he said he would, then when the nurse left he proceeded to tell us how he’s in such demand he shouldn’t put up with things like that. I had to reschedule my last Botox appointment because of the infection I was fighting. My next appointment is on the 24th, I’m refusing the Botox.

I don’t know what happened, but I just got my Maxalt refill and it is for FOUR pills for a MONTH! I have a headache all the time, every day. Because I’m only supposed to take medication for 10 days a month to prevent medication overuse headache I tend to wait until my headaches get to an 8 or 9 before taking a Maxalt, if I don’t then I will run out long before the end of the month. This often means that I will have a severe migraine for days, or weeks, because I’ve waited too long to treat it.

The prescription is normally for 9 – 12 tablets depending on the doctor (my last doctor wrote it for 18, but she was in a headache clinic where they only treat headaches and could get insurance to cover it.) Maxalt is to be taken at the start of a migraine, if you do not have relief in 20 – 30 minutes take a 2nd one, not to exceed 2 in day. So if you end up taking 2 for a headache and you get 9, you will find relief for only 4 headaches and pray the next headache only needs one. When you have chronic migraine like I do, that means you have a migraine at least 15 days a month, did I mention I have a headache every day? So, even if I get relief from one pill each time that still leaves me with …heck so many migraines without medication I can’t even think, that really sucks.

So FOUR are only going to treat 2 – 4 headaches, see the problem?

Right now I honestly can’t say if this is an error, or if the insurance company did something screwy, or what. If the insurance is the problem then that’s a whole other issue, which is also a thorn in the patient’s side.

We should never be made to feel that our medication is being held hostage.

No matter the reason, the 24th will be the the last time I see this doctor.

I am seeing a new specialist in March who is with the Center of Neuroscience. It took me over 3 months to get in, but I’m okay with that if she is as good at my headache specialist at Duke and Carolina’s Headache Center. I’m really hoping to try one of the new migraine prevention medications.

**Everyone should read Kara’s comment to this post it is excellent.

Mindfulness Monday – Changing.

I’ve decided to change things up a bit on my blog. I won’t be posting a Mindfulness Monday every Monday. I will still post once or twice a month, I’m hoping to blog more often with different topics. (health allowing) xo

Remember…

This is my favorite quotes. I hope you enjoy it, I know I’ve used it before. xo

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

My Plumbing Doesn’t Work

I saw the nephrologist today (kidney doctor), she was very thorough and very kind. When I told her I needed to read her lips she immediately started looking at me when she talked and did not forget, not once! That’s pretty remarkable, even people who are around me all the time often forget. I admit it does drive me crazy how often medical personnel seem to just ignore me when I say it. I liked her from the start.

When I told her I was there for hydronephrosis (the kidney swelling due to urine failing to properly drain from the kidney to the bladder, caused by an obstruction ) she mentioned that a stone is the most common cause, but I have it in both kidneys, so that isn’t my issue. She told me “your kidneys are working fine, it’s just your plumbing that isn’t working”. The ureter (the tube that hooks the kidney to the bladder) simply isn’t allowing my urine to flow like it should. We are hoping that it was caused by the urinary tract infection and it will resolve on it’s own. I have to have another ultrasound week after next (our schedule and their schedule didn’t work together before then), to see if I still have the hydronephrosis, if not, then we know it was caused by the UTI, if so, then I’ll need to have a CT scan. I’m having the ultrasound first to try to avoid radiation exposure unless it’s necessary. After the CT scan we will discuss treatment options.

Hopefully it will be all clear, but if pain is any indication then it’s still there. I’m not in pain all the time, but today was a higher pain day. If I drink anything other than water it hurts a lot, I tried that today…I won’t be trying it again for a very long time.

Now I have to pee.

New look and a Mini Me, Update

I hope everyone had a magical holiday season. I hope you didn’t kill anyone. I know I wanted to a few times. Luckily it ended when it did.

I’ve started a new look to my blog, I will probably change the photo soon, but I wanted a better font and line spacing, especially with the new way WordPress is making me format post now.

Thought I’d give you all a little health update since I left things kind of up in the air. My infections seem to be all gone, or at least almost all gone, no worries about that anymore! Yay! But my tests showed that I have an obstruction in my kidneys. Yes, I said, “kidneys” plural. I don’t know what is going on. I had an urgent referral to a nephrologist, but they seemed to not think it was urgent since I don’t have an appointment until January 7th. I have been told that if there is a change in my symptoms to get the ER immediately. Okay, I can do that. I’m thinking this was caused by inflammation from the infections and it will clear up, possibly on its own? (one can hope) Maybe that’s why they weren’t worried about getting me in there sooner? I did have a pretty severe pain yesterday, I decided to drink something other than water and very weak decaffeinated tea and my kidneys screamed in response, so did my bladder. Maybe it’s not just inflammation?

We had a very quiet Christmas. We had breakfast with Stuart’s father, and we watched holiday movies all day. I ate entirely too much the past couple of days. It’s obvious there is something going on there. I simply can’t stop eating. Either this new medication is making me crave all kinds of crap, or I’m not dealing with things as well as I think I am. Maybe it’s a little of both? All I know is that if I’m not eating, I’m thinking about the next thing to eat. (if I’m honest, I know I’m not dealing with everything well, I still have this underlying anger that wants to break through often. My husband has the patience of Gandhi. I don’t know if I would put up with me for this long. He says it really hasn’t been that long, it feels like a life time to me.)

We ended up canceling our rescheduled Christmas dinner too. That has been hard on me. Not really that we had to cancel, but that it is going to be very hard to plan it now. and the decorations would have made it very festive, what am I going to do with that empty spot in my corner where the tree was? We moved the furniture and now there is nothing to put there. hmmm. Luckily I like minimalism. We decided we just shouldn’t try to do all of that when we don’t know how I’ll be feeling. So I’m waiting until after I see the kidney doctor before rescheduling. We decided to make this dinner much more laid back though, spaghetti with salad and bread (all gluten free of course). Everyone was all on board with this too, amazing! Most of the time I’m hit with…so and so won’t eat that…it’s hard when you ask and ask what people can and can’t eat and then when you make plans you hear that it’s not right. This might be the last dinner I plan. I now understand why they all go out to eat so much.

There is still so much drama here that it makes my head spin. I’ve just been lying low and keeping to myself. Stuart worries that I need to be more social. Maybe when I feel better, but right now, as long as we get out for a little bit once a week, I’m good, just curled up in my chair with heat on my abdomen and/or back, I’m good to go for now. I’m worried about him, he’s been awfully depressed lately. I think this move took a lot more out of him than he wants to admit too, and he’s worried about me…darnit.

Well, it’s getting late and I find myself rambling so I’ll close for now. I do find myself rambling much more lately, can’t stop talking, a sure sign that I’m still dealing with mania, but I don’t like this new medication. It has too many side effects and too many things that can go wrong. I hope there is another option. I see that doctor late January, she took a lot of time off for the holidays and I had to cancel my last appointment right before she went on vacation because of the kidney stuff. I really need to see her though, we called and I’m on the wait list, hopefully an appointment will come available. We also asked for orders to get my blood drawn, since you are supposed to do that within the first month of being on this medication to make sure your live is okay. Got that yesterday, will be having it drawn tomorrow.

How’s everyone out there? I’m looking forward to having some of these things resolved soon so I can start the new year on a healthier note. I does seem that I either go out of a year feeling like crap or start a new year feeling like crap. Within the first hour of this year I had a cluster headache (and every day since) that’s a sure way to start the year off with a dud. 😉 I’m sure that it will only go up from here.

I will just stop and be thankful for all the support and love I have.

and just breathe.

Just Stop 2019

image by pixaby.com

In 2017 I wrote a post about my theme for the year being “Just Stop”, lately it has been going through my mind a lot and I want to revisit that post today. Once again, making “Just Stop” the focus of the new year. During this past year I had a hard time staying mindful and following the path before me, simply staying in the moment seemed a bit too much to ask. But I’ve found the more time I spend trying to make things better and not accepting things as they are, I’m making things worse. It’s time to pay attention and simply…Just Stop.

  • Just Stop and listen to my body more.
  • Just Stop and listen to others.
  • Just Stop and think before doing.
  • Just Stop and think before speaking.
  • Just Stop and get centered before moving.
  • Just Stop and think before putting that food in my mouth.
  • Just Stop trying too hard.
  • Just Stop feeling guilty for things I can’t change.
  • Just Stop worrying about the what hasn’t come.
  • Just Stop and meditate.

Just Stop.

Mindful New Year

“Do not wait until the conditions

are perfect to begin.

Beginning makes

the conditions perfect.”

~ Alan Cohen


**************************************************************

“Begin doing what you want

you want to do now.

We are not living in eternity.

We have only this moment.

sparkling like a star in

our hand and melting

like a snowflake.”

~ Marie Beynan Ray

**************************************************************

“Be mindful of how you

approach time.

Watching the clock

is not the same as

watching the sun rise.”

~ Sophia Bedford-Pierce


**************************************************************

“Although no one

can go back and

make a new start,

anyone can start

from now and make

a brand new ending.”

~Carl Bard



**I hope everyone finds more joy, health, love, and compassion in the upcoming year. I know it’s been a hard one for many of us. Just a few quotes to share today, more words from Wendy coming soon. 😉

Canceling Christmas and that’s okay.

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.

Cochlear Implants Are Different

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.

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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.