Yes, you can have a migraine for over 2 years.

I haven’t been here in a long time, the pain hasn’t allowed it. It was much easier to blog when I was just dealing with Meniere’s, at least I had breaks. Yes, I had migraines then, but not like this. Nothing like this. And I’m not dismissing Meniere’s, it has been hell. I’m so very grateful that it’s soooo much better even the recent spell I had was nothing like before. I rarely have full rotational vertigo. I do get the vertigo that feels like you are moving and you aren’t, kind of like walking on a boat, but there’s no boat, no water. Occasionally I’ll get the drops, as I call it; it feels as if I stepped into an open elevator shaft and just keep falling. Luckily, that doesn’t last too long. I just hug the floor and keep chanting “I’m not falling”.

I veered off course there a bit. This post was supposed to be an update on my migraine situation, and just life in general.

Migraines have been extremely high. My number scale has completely changed, I didn’t realize that migraine pain could get as high as it has. I also don’t think I really understood fatigue until recently. I am so tired all the time. I fall asleep during the day. When I walk, I feel like I have to push through the air, as if the air was partially solid. That sounds weird, but that’s what it’s like. I fought it for a while, but lately I just sleep when I can; if I’m sleeping I’m not aware of the pain (most of the time).

My doctor called in a “migraine cocktail”, I have to go to an infusion clinic to get it on Friday. It can’t be soon enough for me. I don’t know what’s in it, I guess I’ll find out once I’m there. Maybe it will work, I’ve had migraine cocktails before, but different places combine different drugs and call it the same thing. If it doesn’t work, I hope they can admit me and do something to break this cycle, it’s been over two years now. If it breaks then maybe the preventatives will work, I don’t think they can really do their job when you don’t have a break. Maybe that’s not true, but it’s my belief.

Dad is doing better. I don’t know it I wrote about the bleed he had in his stomach. They put him on blood thinners because of his heart, then he had the bleed and ended up in the hospital for about a week. He still looks pale to me, he is still anemic. He hasn’t eaten red meat in many years, not the doctors told him to eat it. It’s quite funny to me, he stopped eating it because of his heart, not he needs to eat it. If he’d eat spinach and legumes he’d get more iron than eating red meat, but who listens to me? Next week he gets a device called The Watchman inserted in his heart, it stops blood clots from forming in the heart so he can get off blood thinners.

Well the computer is getting to me, so I will close for now.

I want to apologize to everyone who has emailed or texted me, I just haven’t felt up to answering a lot of things. I also haven’t felt up to looking at and reading blogs, some I have read, but I haven’t been able to comment. Being on the computer for long is crippling.

So I will sign off for now.

Hopefully I can come back soon.

Maxi-Me Update

We had a beautiful sunset recently, this is the view from my house. Too bad there’s power lines in there, but the cactus silhouettes sure are pretty

I’m shocked that it’s been so long since I wrote an update on me. The last month, or more has been stressful to say the least.

I just looked back at my last few posts and it looks like I have a lot to catch up on, forgive me if I really have said some of this. I wish I’d written it all before, I like to keep up with things and this is one of the best ways I have of documenting things. So, here goes…

I went to Barrow Headache Clinic in Phoenix, and I really like the doctors there. I saw a neurologist who isn’t part of the actual headache clinic, this was the best way to be seen sooner, the wait to see one of the doctors in the headache clinic was much longer. However, the doctor I did see has been working with the doctors who specialize in headaches. I’ve actually had 3 doctors working on my case. When I had the appointment I didn’t feel rushed at all. I felt like I was respected, that they understood that I’m very knowledgeable about headache disorders (mine in particular) and they trusted me when I told them what I had tried and what didn’t work. They are working hard to help, but they aren’t doing in-patient treatment right now because of the increase in Covid cases. That’s hard. However, they are trying new medications, have changed up some that I was already on (increased some doses, changed forms of some…) So far, I’m very impressed. The only thing I’ve had a hard time with was that I had a hard time getting the patient portal to work, and no one could seem to figure out why. I’d get in, but it had no record of me being seen there, no record of upcoming appointment, no way to message my provider…nothing. Finally it is fixed, that’s making things much easier.

They ordered a Tilt Table Test to see if I’m having blood pressure problems when i stand, or if I have POTS (Postural orthostatic tachycardia syndrome). It did show that my BP is dropping significantly when I stand. (Orthostatic hypotension — also called postural hypotension) It doesn’t appear that I have POTS, if so it’s mild. As you may recall I have been having some pretty high spikes in my BP, which caused a Branch Retinal Vein Occlusion in my left eye, it seems I’ll never recover all of my eyesight in that eye. It’s not bad, but the lower part of my vision is very blurry, it makes it hard to read and to see things clearly on my left side. It may get better, it probably won’t. The last time I went to the retina specialist (about a month ago) it showed that it had bled again, that’s why my vision was a bit worse. I got another shot in my eye, and i go back to him next week. (It was supposed to be a couple of weeks ago, but I had a Meniere’s Flare that lasted over a month). He told me that the reason it bled again is because I had another spike in my BP since the last time I saw him. So, what do we do about my BP. I’m on BP meds for hypertension, which may be causing my BP dropping problems, but it might not. I see my PCP in a week or so to discuss this, I really hope we can figure something out. I’m tired of feeling faint when I stand, my vision blacking and the pain in my head spiking when I squat down and get back up. It’s difficult, if this is contributing to my pain, this needs to change.

I do have hope, but I’m very tired.

The Meniere’s flare really did a number on me. My ENT put me on steroids to break it but it seems to make it worse. It also caused me to be ravenous, emotional, paranoid, restless….it was hard. I looked over my journal entries during that time and they are dark, and very sad.

I’m having wide spread pain. I was diagnosed with fibromyalgia many years ago, but after I made a lot of diet changed, it seemed to calm down a lot. I’d only have short-lived flares. But lately, it hasn’t stopped for quite some time. My body hurts.

I’m very tired. Exhausted.

Stuart is starting a new job next week. It is only paritally remote, he will have to go in to the office some. That makes me nervous. I’m okay, trying not to worry about the future, sometimes I succeed, sometimes I don’t. Of course the Meniere’s flare showed me the worst that could happen. I had severe disequilibrium and minor vertigo for so long. I couldn’t even walk by myself. My walker was of no use, I was way too off balance and would just tumble over. S even had to help me to the bathroom. I didn’t realize how often I pee! I met with a couple of my neighbors and asked if they knew of anyone who might be able to helpo me when S has to work in the office, taking me to some appointments, perhaps coming to help if I’m too off balance…anything that comes up. Both immediately said they were very willing to help. one can’t drive me to appointment right now (she’s having some trouble with her back and it’s causes neuropathy in her feet, hopefully that won’t last), the other is more than willing when she can. She’s a bit busy so I need to make plans as far in advance as I can. I really hope this works. I’m so amazed how the people in this neighborhood have embraced me. I’m sad I haven’t had the opportunity to meet more of them, but Covid got in the way. I can’t believe we are going on 2 years of this. I don’t think it will ever go away, but I sure hope we can deal with it better/easier in the not to distant future.

Another big stressor, my therapist is retiring. At first I thought it was no big deal. I was okay with everything. Now, not so much. I’ve been very anxious. And I realized just how much I am going to miss her. When I first moved here I knew no one, she was my only real contact with people other than S’s family. That’s not good. So she didn’t just feel like my therapist, she feels like a friend. I’m really going to miss her. It makes me cry just thinking about it. This week I met with a therapist who may be my new therapist, I believe in meeting at least 3 times before deciding that, but I felt very comfortable with her, I think it might be a good fit. She even said that my old therapist could join us in a session to help with the transition. I decided that would be too hard on me trying to hear them both, so they are just going to talk so my old therapist can give her an idea of who I am. My present therapist told me, “I’ll tell you everything we talk about” She is so supportive of me. She’s always telling me how special I am, how se admires how I handle things, how strong I am….I don’t think I come across that way to many other people, I’m glad someone does. I do try so very hard.

Well, I’m getting very emotional so I don’t think I can continue right now.

And I haven’t read it over for errors, I’m sure you’ll understand and it will give you an insight as to how I think I guess.

What I love about the holidays during COVID-19

Image by Jill Wellington from Pixabay

As much as I love most things about the holidays, the stress is not one of them, and oh, how stressful they can be. This year, it’s different.

Having multiple chronic illnesses that have kind of ravaged me lately, I’m thankful this year the holidays mean no stress…or as little as can be.

There’s one person (or maybe two) that I always have to see during the holidays that I’d prefer not to spend time with. This year is different, I don’t have to. When we were asked what the plans were for the holidays, it was nice to say that we are isolating. (With the number of COVID cases rising each day, why would anyone risk getting together? I don’t get it. I’d rather have my loved ones alive and well so we can get together when it’s safe.)

I don’t have to get upset if I’m not invited to parties.

On the other side, when I am invited to a party, I don’t have to worry I won’t be able to go, or might get sick while I’m there.

I don’t have to decorate my house for drop in guests.

I don’t have to feel bad when I can’t host a dinner…no matter how much I’d like to.

This year it will be quiet. I still feel like I need to make nice meals, and cookies, and…. But I don’t have to, and if I don’t, no one will know.

I can just sit back and watch Christmas shows on TV, sing carols out of tune, and eat Chinese take-out if I want.

Okay, the first two, yeah, that will get done, but the Chinese take-out might not. We’ll probably have Dad over for a social distance meal on Christmas, but who knows. Maybe not. It’s a no stress holiday after all.

Remember, we aren’t STUCK at home, we are SAFE at home….and so are our loved ones.

Merry Christmas!

I didn’t close my blog, I promise

It’s been so long since I posted I’m sure you all thought I was gone for good. Unfortunately this has to be a very short post.

Presently I’m in a lot of pain all the time. I still have that intractable migraine I’ve had since late April, luckily it varies in intensity, often having much lower pain days. However, there are days it is absolutely excruciating. That isn’t the worst thing I’m having to deal with right now, I’m also having very severe nerve pain across my shoulder, down my arms and the worst is my hands. It’s better when I’m lying flat with my arms at my sides, but I can’t do that all the time. I’m getting a CT scan soon to see if the nerves are impinged in my neck, if so the pain doctor will give me an epidural to help. It hurts so much I have to stop posting this every few seconds just so I can tolerate it a little.

On top of it all I’ve had a severe rash for over a month. The doctors aren’t sure what it is. It is incredibly itchy, it is torture. My allergist thinks it’s the rash you get when you are Celiac and got gluten, dermatitis herpaformis. I had a biopsy last Thursday to hopefully get an answers.

This is in various places all over my body, my back and this arm are the worse. There are many, many bumps you can’t see in this photo.

I think I’m a pretty strong person. After all I’ve been dealing with Meniere’s for MANY years, and I broke my neck in 1992. I’m not a stranger to healty adversities. But I have to admit, this is really getting to me. It’s just so much on top of another. It hasn’t just been a straw that broke this camel’s back, I was hit bye an anvil! I’m so grateful my antidepressant (esketamine) has been working, or I’d be worse than I am now, and right now I feel like blowing my head off.

Now I have to close, I simply can’t type any longer, but I have so much more to say. Hopefully I can post again soon.

Nothing is working

Photo by Anna Shvets on Pexels.com

Last I was here, a loooong time ago, I mentioned all the new things I’m trying, or would be trying. Well, nothing is working to get rid of this migraine. Some of the devices (Nerivio and Ceflay) help reduce it so I am somewhat able to do things on better days, but they never take it away.

I had my Vyepti infusion on the 26th, I should have seen progress within the first week, unfortunately there has been no change. I still have this migraine I’ve had for MONTHS now. Some days it’s a little better, many days I just want to rip my head off. The pain really gets to you, especially when it’s accompanied by other symptoms that aren’t so pleasant. The light sensitivity is especially hard for me, I feel like I’m living in the dark all the time, if I’m not in the dark I’m wishing I was. I live in the desert, it’s friggin’ bright here! And the heat! Last two months have been the hottest on record, thankfully it’s starting to cool down a bit, we’ve had some days that have been in the 80’s this week. Yay! I’m finding that bright light and heat are a trigger for me. Or maybe it’s just because I have a migraine that WILL NOT STOP!

So I wrote my neurologist (who is a headache specialist) and asked about two things. I wanted to know if I haven’t seen results from the Vyepti by now would it be worth trying the higher dose. I also asked about a new symptom (I’m having some weird headache pain when I turn over in bed at night my head will suddenly explode in severe pain. It feels a lot like when I was having Idiopatic Intracranial Hypertension, but I’m not getting symptoms when I’m horizontal or vertical. (normally when you have intracranial hypertension the pain is much worse when you are lying down and relieved when you sit up, if your cerebral spinal fluid is low then you have pain when you are up and not when you lie down). In closing I asked her if she had any recommendations.

I received an answer that was disturbing.

"1. so any new headache as you might imagine I cannot assess by email. I would need to see you in person to really thoroughly discuss and evaluate. We can set an appointment but I am taking off a week at the end of the month and have surgery so my schedule is a little bit messed up 2. We can certainly try the 300 mg however it is not covered by any insurance and statistically it was not that much better than 100 mg so unfortunately it would probably be a cash pay situation which I would not suggest. However overall I would have expected some benefit by now. 3. Next option would be to get another opinion unfortunately best next opinion in my opinion would be in San Diego"

My response to that, which I haven’t sent, is 1. I already have an appointment set up for October 7th, I doubt I can get in before then; even when she doesn’t have all these things it’s impossible to get in to see her in a timely manner. I sure hope this new headache isn’t anything serious. 2. Well no I don’t want to try the higher dose under those circumstances. and 3. Well it’s obvious I’m beyond her capabilities. I understand how frustrated she may be but, San Diego?!?! That is over 6 hours away from here! I do not understand why there isn’t anything at Mayo, it’s just a couple of hours from here. I am willing to go anywhere but not when my husband doesn’t have a job, and often insurance companies won’t pay for treatment out of state unless it’s an emergency. I tried to go to a doctor in San Diego before and my insurance would not approve it. Perhaps if my doctor here is sending me it would be different? Who knows, my insurance can take months to decide things anyway.

Stuart still doesn’t have employment. He did have a very encouraging interview, so we are hopeful, but who knows. It’s a big pay cut if he gets it, but it’s much better than nothing., and it’s easier to look for a job when you have one. We are doing okay financially, but going to San Diego right now isn’t possible, and when he gets a new job I can’t ask him to take time off to cart me to a different state for treatment. I’m hoping when he gets a new job that we have better insurance. The one we have now is a pain to deal with. It was much easier with Blue Cross. Not that any insurance company is great. I’m so grateful I have Medicare to supplement my private insurance.

I’m so discouraged. It seems like any treatment I’ve gotten for my pain hasn’t worked. My pain management doctor tried injections in my neck and it didn’t work. I can’t take most things they give people for pain. I can’t take opioids, they make me itch like crazy! I can’t take NSAIDS because they eat up my stomach. I started a new medication, Low Dose Naltrexon. With this medication I probably won’t see any effect for months. We’ll see, but after everything, I don’t have a lot of hope. (this is the same medication they use to help with opioid addiction, but at a much higher dose. You can read more about LDN on the LDN Research Trust site.

I realized the other day just how long I’ve been dealing with being sick. I’ve basically been sick most of my life, but things got much worse in 2001, that’s when the Meniere’s disease started getting worse and basically consumed my life. In 2008 I stated seeing new doctors at Duke and they told me I was disabled, from both the Meniere’s and my chronic migraines. It took me until 2015 to accept that and actually file for disability. I just realized though how many treatments I’ve tried to help me, and how long of a fight it has been. 19 years I’ve been dealing with being severely chronically ill. I’ve been ill for basically my whole life, but it wasn’t severe until 2001, it was at that time that I had to stop working full time, it wasn’t long after that that I had to quit working all together. I’m so extremely lucky that I was able to not work.

I’m still trying a few things, I’m seeing an allergist next week, maybe some of my migraines are coming from that. Stuart is going to call the doctor in San Diego and see if they have virtual visits, how the insurance works, how they treat intractable migraines, and if there is a patient portal or email so I can communicate with them directly. Then he is going to call Mayo with the same questions and see how different it is.

This is getting long and I feel like I’m just whining. I don’t mean to be. I realize that when you have a chronic illness you end up having to grieve over and over, every time there is a loss. Having my doctor tell me she can’t help is a huge thing I have to accept. I have to accept that no one may be able to help. Right now I’m just trying to survive with a status migraine (formerly called an intractable migraine) and increased Meniere’s attacks (a lot more vertigo, hearing changes, even with my cochlear implants, and the feeling of fullness in my ears.

One day at a time.

Light Switch Flipped

Image by Arek Socha from Pixabay

This is going to be just a (relatively) short update, if you read my last post you will have a good idea of what goes on during my treatments. My dose pack was increased back to 3 (84 mg), but the “trip” that I had the last 3 treatments was not as intense at the first time. It was pleasant, fun even, but not the same. My husband is so patient to put up with this, he says it isn’t bothered by it at all, but I have to wonder. He is not the kind of guy to just let loose and have fun with you when you are intoxicated and he’s not, and I’ve only seen him a little drunk once; and let’s just say he cannot sing but he’s a much better dancer when he’s a bit tipsy.

An amazing thing happened at the end of the last treatment, I felt as if a light switch flipped, and I looked at Stuart and said, “So this is what it’s like to not be depressed.” It wasn’t the happy silly feeling I was having when I was high, of course I wasn’t feeling depressed then. And during mania I don’t feel depressed. This is different. As a friend asked, “Is it like in the Wizard of Oz when the Black and White turns to Color?” YES!! Suddenly the cloud is gone. It’s just gone. If things weren’t so crazy in the world I’d probably be really happy right now, but as it is, I’m handling things really well. I had a little spell this weekend where things slipped in and I felt the cloud closing in, so I don’t think I’m quite to the point of going to a maintenance dose yet, but This is AMAZING!

I had another vertigo spell that lasted 3 days this week. It was mostly severe disequilibrium. I had no balance on Friday, I thought I had an ear infection. I could not walk without Stuart’s help, and by help I mean almost carrying me. I was stuck in a chair the whole weekend and couldn’t do anything for myself. It brought back the feelings of complete helplessness I had when I was at my worse. That is what triggered the small bout of depression, but it probably would have been worse before this treatment. I’m a bit concerned that I’ve been struck with vertigo each week I’ve had these treatments. If it happens this week, I’m really going to think SPRAVATO might be triggering my Meniere’s. If so, I hope it gets better the longer I’m on it. If that’s not the case, at least in maintenance I’ll only need it once a month, maybe getting it less often will lessen the risk.

So that’s all for this news. I have more to tell, but that’s for a different post.

Journal Day 2 – Yoga Therapy

It has been a very long day and I thought about not writing today, but the main reason I decided to post these journal entries here instead of writing them in a personal journal was to keep me accountable and keep me motivated, so here goes it.

Firs Saguaro bloom I saw this year.

My 3 day migraine broke about 10pm last night, so I was able to sleep well until 5am when I woke feeling a bit off and went to the bathroom when suddenly vertigo hit and so did the pain in my head. I had a vestibular migraine, with migraine associated vertigo. I’m not sure how long the vertigo lasted. I took my medication, and used medical marijuana to stop the vomiting and waited it out until I could go back to sleep. Stuart stayed with me and then worked from home to make sure I was okay. When I got up at 10am I no longer felt the effects of the vertigo, but the migraine was more intense. I ate breakfast hoping it would improve before my 1pm appointment, but by noon I decided I needed to take something. It took the edge off just enough that I was able to get through my appointment.

Now, about that appointment! I’ve been in physical therapy for my back and it simply hasn’t been helping so I decided to try something else. Someone recommended a woman who is a physical therapist who teaches therapeutic yoga. I’m working one on one with her. The first visit was very interesting. She showed me lots of photos of how muscles work together and we talked about how if certain muscles in one part of the body are not strong then other parts of the body will suffer. My hips and pelvic area are weak. She said that often when those muscles are weak it will cause pain in the back, especially when standing for a while, like mine does. She gave me some very simple exercises to focus on over the next couple of weeks then I go back in. I don’t know if this will help my back or not, but I know my whole pelvic area needs to be stronger so I’m going to work really hard on this. I’m really proud of myself for going to this appointment after waking with vertigo this morning, often that would cause me to be too afraid to do anything for the rest of the day. I was more off balance than normal, but I was determined, and since Stuart was able to take me I felt safe.

After that appointment we went and picked up my new glasses. I got new glasses a couple of weeks ago, but they made the lenses wrong. They had the focal point in the wrong spot so my progressives were not working at all. Now they are all fixed and I can see the computer. I’m not positive I like these new frames, it will take me a while to get used to them. They are SO different from my old ones. I went from dark bold statement frames to clear light weight frames. What a difference. I would post a picture, but I’m in bed. lol

We then went to Walgreens to pick up some prescriptions of mine and get some things straight they have messed up and I had a bit of a melt down. They really have messed up a few of my prescriptions, calling doctors for refills who I don’t see anymore, filling things I don’t need, prescriptions not showing up on line so I can manage them….So I had a list of things that needed to be discussed fixed, but I couldn’t hear anything in there so Stuart had to do the talking. I was trying so hard to follow what was being said, and he would ask me something and I’d try to answer and then I felt like he just dismissed me and half the things on my list were not addressed and it was just a mess. I ended up in tears and went to sit in the car. There has to be a better way for me to communicate the things I need.

I looked back at the situation and when we walked up there it was so noisy I got so overwhelmed told Stuart that I couldn’t hear so he would need to handle it for me. Right there, I gave up my control in the situation, but then I got upset when I felt like he “dismissed” me. When I started to feel like things were not being handled the way I wanted them to be, I should have spoken up and said something. Even though I couldn’t hear well enough, I should have made them slow down and help me understand, even it that meant they had to write it down. This is my healthcare, I need to be more assertive and stop being so afraid.

There’s something else I need to also look at with this situation though, I had a migraine. The pain had increased to a 7, it was harder to concentrate and focus, my vision was slightly blurred from the florescent lights and the right side of my face was tingling. I honestly don’t know if I would have spoken up if I had been migraine free, but I do think I need understand that migraine changes how you deal with life, and I need to give myself a break sometimes.

Starting to Deal with My Anxiety

I’m in the infancy of dealing with my anxiety and I thought I’d share some of the things I’m working on with my therapist. There are a number of things I’m starting to implement but the very first thing I’m to do is to understand that it’s perfectly alright for me to avoid things that cause me increased anxiety. In the future I will push myself to do things that are uncomfortable, but, right now, I’m going to just back away and take a breather from things that make me the most anxious.

Next is to make sure I’m taking care of myself, eating well, exercising when I can (something that can be a challenge for someone with chronic illnesses, but something that can help a lot I’ve found.), keeping up physical hygiene and getting enough sleep. Sleep is so important that my psychiatrist prescribed something to help for days when I simply can’t fall asleep. I used to sleep 8 – 9 hours a night without aid before the mixed mania episode now I barely make it 4 without help. I had 2 nights last week where I slept almost 7 hours without any help, that’s a great improvement, now if I can just have more nights like that.

My therapist suggested I do deep breathing exercises during times of high anxiety and have reassuring phrases prepared to tell myself.

BREATHE…IN 1 – 2 – 3 – 4….HOLD…OUT 1 – 2 – 3 – 4

IS MY BODY CALM? REPEAT AS NECESSARY

I WILL GET THROUGH THIS.

I AM GOING TO BE OKAY.

THIS WILL PASS.

I have another grounding technique that I got from a friend that I find helpful but it is a bit challenging for me, because it’s based on the 5 senses, so I do it a little differently but I think it works just as well.

You do this grounding technique by taking stock of all your 5 senses. If you can, try to say this aloud as you are processing it, if not, that’s okay too.

5 – See – What are 5 things you see around you right now? I see my computer, my water bottle, my walker, the fireplace, the rug.

4 – Touch – What are 4 things you could touch or feel right now? I can feel the water droplets on my bottle, I can feel the softness of my blanket, I can feel the ribbing on my sweater, I can feel my hair

3 – Hear – What are 3 things you can hear? (okay for me this one is different, if I can’t hear 3 things I list things that could make noise, or noises I’ve heard that I like….) Right now I hear a whistling in my tinnitus. I hear the TV is on. I can imagine there is traffic making noise outside.

2 – Smell – What are 2 things you can smell? I can smell….well not much I have a cold..hahaha…but if I didn’t I could smell my tea, I could smell my dog.

1 – Taste – What is 1 thing you can taste? I can taste my tea.

I’m doing this exercise at least once a day just to become aware of my surroundings and to make sure when I do it when I’m anxious I’ll be able to just easily fall into it and not be freaked out trying to figure out what I was supposed to do. I did that once and it freaked me out worse.

I keep a card in my purse and one in my side table at home that list this grounding technique, I admit I can never remember what comes first and then I get all anxious so it just negates the purpose. On the other side of that card I have the breathing techniques and affirmations written to remind me, because when I’m having a panic attack nothing much is really getting through this noggin’ of mine.

I’m also working on trying to be more mindful. As anyone who reads my blog knows I have focused on mindfulness for a long time, but for some reason when things started to get worse my mindfulness practice started to stray. The senses grounding technique is also a mindfulness technique that’s a good start. I’m also trying to consciously take at least 5 minutes a day to be very mindful aware…. non-judgmentally.

So that’s what I’m doing right now. As I go through this journey I’ll share more with you. I know that my hearing loss and other things in life are causing me to have a lot of anxiety at the present, but I’m not giving up. I also know that it’s not just my hearing loss. Before we moved to Tucson I was starting to really deal with my hearing loss anxiety, I was starting to get out there and push myself. I went to a couple of Christmas parties, and made some friends. I got involved in the Hearing Loss Association. I was driving again, for short distances (the traffic in Charlotte was crazy), but once we moved here my physical health took a turn, and so did my mental health, not to mention the stress of the move itself. I feel like all the strides I took are gone, but I know I can do it, I have. As a friend said to me, “We can get far going one step at a time.”

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