As excited as I am about getting the Cochlear Implant (CI) next week, I’m nervous too. I realized this yesterday. I had appointments scheduled for this week and a dinner with friends scheduled for Sunday, and I told Stuart I just couldn’t do it. I simply feel like there is too much stress on me right now. With all the stress, I was making myself sick.
So what am I nervous about? You would think I’d be nervous about the surgery, but I’m not. I am nervous about the nurses finding a vein for the IV before the surgery, that is always an ordeal with me. However, mostly I’m worried that the surgery will be postponed. There have been so many delays, I’m having a hard time believing it’s going to happen. I am expecting something to happen…I’ll get sick, my doctor will get sick or have to postpone for some reason….anything.
Now that I realize what has been bothering me so much, I’m dealing with it much better. I know the surgery will happen. If some unforeseen circumstance causes the surgery to be delayed , I’ll deal with it. I know it will happen, if not next week as scheduled then as soon as possible afterward. I still don’t want to be stressed out more by going to the dentist, having a mammogram, and having a dinner party. These things will just have to wait.
Now, let’s talk a little about the surgery. I’m pretty lucky really, about 90% of the surgery has already been done to me. Since I had the Endolymphatic Sac Surgery, they don’t have to drill a hole in my head. It’s already there. All that has to be done is thread the wire from the CI into the cochlea, and place the implant.
There were 3 companies for me to choose my CI from, each had positives and negatives but really they were all pretty close. I chose Advanced Bionics. This is a very personal decision for each person who gets a Cochlear Implant, I felt that the Advanced Bionics CI would fit best in my life style.
I’m so happy that Duke is a two processor facility. The processor is the part that you see on the outside. Since Advance Bionics offers more than one processor, I was given the choice of getting 2 the same or one of each. I chose to get one of each. One processor is called the Harmony, it is a Behind The Ear type. I liked this model because the T-mic (microphone) is located at the opening of your ear, so it will be easier to talk on the phone, and my ear will act as a natural buffer for noises, like your ear normally does.
Here’s a photo of the Harmony Processor:
Harmony Processor – photo from Advanced Bionics website.
The Harmony comes in a variety of colors. I think I was allowed to choose 5, but it’s been so long now, I don’t remember what colors I chose. We’ll have to wait and see after I get hooked up. You can use regular hearing aid batteries, or rechargeable batteries, I’m sure you know which ones I’ll be using. I was able to chose different types of rechargeable batteries, small and large. The small battery doesn’t last as long as the larger one. I ordered both.
The other processor I chose was the Neptune. The Neptune is capable of being Water Proof, it’s the only CI that is Water Proof, so I can swim in it! The Processor is not behind the ear (BTE) it can be clipped to different things: an arm band, your shirt, a lanyard, your hair…ect. The microphone is on the part that fits to the head.
Here’s a photo of the Neptune:
Neptune Processor – photo from Advanced Bionics
I realize the photo above doesn’t give you a good idea of what the Neptune really looks like. So here’s a few that will give you a better idea:
This photo shows the Neptune Processor. The thinner profile is not water proof, you must add a different piece to the processor to make it water proof, that is shown on the thicker profile. (photo from AdvancedBionics website)
This shows the Neptune on a child while swimming. The processor is hooked to the arm band. (photo from Advanced Bionics)This shows the processor clipped in a pocket, and in a girl’s hair. (my hair is long, I could completely cover the CI in my hair if I wanted.) (photo from Advanced Bionics)
With the Neptune I was also given the opportunity of picking all kinds of colors. I know I picked a brown, and the lime green seen above, but I don’t remember the rest. We’ll all be surprised when I get hooked up.
The CI will be turned on 2 weeks after surgery. That will be the beginning of August, hopefully the 2nd or 3rd.
Anybody want to know anything else?
I know this is a LONG post, but it’s full of information, right?
There is so much I wanted to accomplish during my little hiatus. Paying more attention to the spiritual side of me, painting, working on some things in the house….
What have I been doing? Sleeping. A lot.
First I’ve been having much more Migraine Associated Vertigo (MAV), one day I had 2 attacks in one day! That’s never happened before. On those days I understand why I’m so whipped out, but there are many days where nothing has happened, but I feel like I can’t keep my eyes open. I’m wondering if one of my medications is bothering me, but nothing has really changed recently. I was taken off one drug, but nothing was added when this started.
On the 12th I had the Pneumovax -23 vaccine. It’s a vaccine for 23 different strains of pneumonia. Including one that causes meningitis. This vaccine is required for anyone who is getting a cochlear implant.
Unfortunately, I’m one of the people who had side effects to the vaccine. Including extreme soreness of the injection site, and my whole arm, fever, swelling of injection site, redness of injection site, diarrhea, and extreme fatigue. Normally, all of the side effects subside within about 5 days, but some people feel some of them (especially the fatigue and malaise for 14 days or more.) I think I’m in the more category.
This has been an experience. Most of the symptoms did disappear after the first few days. The injection site is still a little pink and warm to the touch, but I can lift my arm, not fever, the extremely gross diarrhea didn’t last long, I’m grateful to say. (too much information following) – One day I was having loose stools, nothing serious, but I felt so exhausted, so I decided to take a nap. While I was asleep the diarrhea struck, it didn’t even wake me up! What a mess. That was a scary thing indeed, for a long time I was afraid to go to sleep, but I was so tired. We decided to put a pad under me on the bed so I knew if something happened I wouldn’t ruin the bed, then I was finally able to go to sleep. But I had 3 times where I had to RUSH to the bathroom before sleep finally came…and I’m happy to say the extreme diarrhea stopped.
Still I’m tired. It’s been 19 days. I don’t think this is just the vaccination. I think it’s a combination of MAV (yes I’m having it almost daily, luckily this vertigo isn’t as intense as my vertigo from the Meniere’s. It is easier to get through.), some medication, and probably just some of the stress from everything. Plus, maybe some of the medication.
I am putting together a post about my journey on my way to getting a Cochlear Implant (CI), mostly it’s a lot of waiting. Next week I tell them which processor I’ve chosen, and I find out where we are with the insurance. I’m really hoping this will happen soon. I’d like to have it turned on by my birthday…what a present that would be!
In the next post, I’ll explain more about what is going to happen, which processor I’ve chose, and a bit more about the process I had to go through to get qualified for the CI.
Until then, I think I’ll take a nap. After all I only slept 12 hours last night. : )
On May 1st, I saw the audiologist and ear doctor and as my ear doctor said…..”Your hearing sucks!”
On my hearing tests the word recognition in my left ear was again 0%, and the right ear was 28%. So it’s pretty obvious I don’t understand a lot of what’s being said.
On Friday, May 4th, I had the official hearing test to determine if I am a candidate for a Cochlear Implant. Yes! I am!!
Advanced Bionics – Harmony- Cochlear Implant.
Next step. Insurance authorization. It can take 4-6 weeks. During this time I need to decide which device I want (there are 3 available, and each have some pros and cons…so a lot of reading and research). Also, during this time I need to think of any questions I may have, and be prepared to ask them all. However, I understand the surgery, how the cochlear implant works, how I’ll be hearing differently, and most everything I can think of right now. I’m sure questions will arise though.
After the insurance approves everything, we just have to schedule the surgery…and it’s go.
About 2 weeks after surgery they will turn the device on. I’ve been warned I may not hear much at first. As time goes on my doctor thinks I will hear better and better. If after a few months I feel I’m hearing better out of my left ear than my right, it is a VERY big possibility that by the end of this year I may be getting a second CI. They say if you need 2 it’s better to get them close together if possible.
I was told that I am in a good place about all of this, I’ve only recently lost my hearing and people who get CI’s who recently lost their hearing normally do much better.
Right now, I’m excited at the possibility of hearing again…but cautious. I know hearing through a CI is not the same as hearing normally. I understand all surgery carries some risk. So naturally I’m cautious.
But how would you feel if you were told that in just a couple of months you could go from 0% word recognition, to hearing again. Yes, I know I may not understand everything in the beginning…heck, I may not understand anything….but it will come. I will be able to hear again.
**In other news about me…… The migraines are so much better!!! I had another round of steroids, and hopefully they have stopped the cycle. (There is some doubt right now that I have Intracranical Hypertension. If I do, it has not escalated, and the medication that should help didn’t help much. The migraine treatments have helped much more. My last lumbar puncture did show high CSF, but not very high. Actually, it was pretty low in comparison to most people who have IH…..so we don’t have to worry about a shunt any time soon, hopefully, never!)
Stupid computer can’t figure out what I want to do Can’t get the dang program to close…ugh….can’t make a slideshow…I know I’ve done it before…why do I want to throw it out the window.
Heard from friend was nice, but it’s hard. Can’t do so much. Other friend told me I wasn’t a good friend because I didn’t keep in touch and didn’t make time for her when I was feeling good, she’s the busiest person I know, I looked back in my emails, the not getting together wasn’t all my fault..I apologized. A lot. But the reply I got back seemed so cold, so sterile. I just couldn’t put more of me out there…..not with everything, I just couldn’t. She wanted so much more than I could give. I want more..but when you can’t just chat on the phone, and people don’t like to email or take your written words wrong it’s so, so hard. And to see someone in their prime doing everything you will never be able to do and everything is about that, and all I can think about is my illness, what is left? I miss her…I miss them…but I have nothing….I really feel I have nothing to offer. What can I offer. I can’t even hear them to talk to them. I focus on if I can get out of bed, brush my teeth, walk outside….maybe if I’m lucky a little more….what can I talk about to people who have a full life? a job, children, acitivites, friends, interests? I’ve been so consumed with just staying alive the past 2 years. Well that’s stretching….Well no it’s not!
This past year I’ve been through so much…and I’ve persevered, and now I’m mad at me!!
I was told I was better, and would be better!!! Damn the doctors! How could they do that to me!
I had 5 months of a new life! A better life! No vertigo. I was moving on. I started to become a Foster Parent, I started to drive, I got a CAR! I was making a life….I didn’t think it would be ripped out from me.! I was so busy….I didn’t think it would end…
After those 5 months I went through 7 more lumbar punctures SEVEN with 5 or 6 sets of patches down my spine. I spent about 6 months in bed with not only CSF problems but gut troubles too. I’ve gained nearly 60 lbs. I feel old, fat and ugly. I don’t like me any more….yet I do. I do. I’m proud of the way I’ve handled things.
I’ve had 2 in depth surgeries on my ears. Surgeries that took my ears almost completely off and drilled to my brain, and left holes in my skull the size of a 50cent piece. But they worked…I think.
I’m now told I have high CSF pressure…Intracranial Hypertension. Serious, rare. My hearing in my “good” ear is almost gone.
Now I’m falling apart….and I’m angry at myself about it!!!?????
I’ve been so resilient, so adaptive, so….I can handle it.It may not be what I expected…so I’ll change what I expected…NOW….I’m just plain scared and mad. I thought I was mad at everyone, I’m taking it out on everyone….But I’m so angry at me. I’m angry I’m not bouncing back, and I’m angry I’m not more tenacious, and I can’t do more and damnit….I’m angry that my body is doing this to me! I’m angry I can’t lose weight….I’m MAD AS HELL!
I’m angry I’m sick! And I have to deal with it. I have been dealing with it. But right now…I’m not doing the best with that. However, I know me, and I will. I’ll get it together, and get myself another lease on life. Life is good.
I have such a good husband. It can’t be all bad. I must think of the good days.
What? Okay, let’s not actually “talk”, let’s type a bit shall we. Ah, that’s better, I can understand this much better.
Recently I saw the Audiologist and had my hearing aid adjusted. By recently, I mean 2 -3 weeks ago. I was amazed. I was hearing things I didn’t know I’d been missing. For days I kept asking Stuart, “What’s that noise?” I do believe I was driving him crazy. He kept having to think, what noise? then he’d realize, oh, she heard the truck outside, or the plane over head…I hadn’t been hearing these things.
Then my hearing started to drop. Just like my left ear did this past summer. It started sounding like a busted speaker. Things didn’t just get quieter like it originally did when I lost the majority of the hearing in my right ear. In my right ear, after each Meniere’s attack I simply didn’t get all my hearing back, things got duller, softer. This is different. Things sound tinny. Broken. Today it’s a bit better, but it’s still there. For some reason, my left ear’s nerve was damaged. Dr. Kaylie said it’s not that uncommon with Meniere’s patients. He said the way I was losing my hearing in my right is more right is more common, but it’s not completely uncommon for it to happen like the left. My worry is, the left ear’s hearing dropped so suddenly. It fluctuated a bit for 3 months, then it didn’t come back.
I just tried to watch something on Netflix. I didn’t realize it didn’t have subtitles, but since I had my hearing aid adjusted if I listened with my iCom (it puts the sound right in my hearing aid) I’ve been able to watch some things without subtitles. This show started, I could not hear anything. I checked the volume on my computer, it was all the way up on the computer and on the site. I could only hear tiny little squeaks. I would not have thought it was anything if I wasn’t trying to hear something.
It bother’s me so much that Netflix has so very many movies and shows that are not subtitled!!! It’s ridiculous. They have a list of some they do have (it is not inclusive) and there is no way to sort it by genre or anything worth while. You can sort it by title, year, rating, and how many stars it got. Big deal. I’m looking for a Sci Fi movie…help me out here. Geez. We usually have to order discs because more discs have subtitles. Ummmm, if the discs have subtitles why aren’t they available on streaming? Really. Do you realize the market you are missing?? OK. Off Soap Box.
My worry about the hearing loss.
image from Wikipedia
I know I will need a cochlear implant. I really don’t want to be completely deaf this late in life. But will they go ahead and do it with everything else going on? Or will they need to get this all settled first? What if I completely lose my hearing in just a few short months? Or less? (I know I’m looking on the dark side, I’m just looking at the worst case scenario, and remember I went through this last year. And right now I can barely hear!) So, tomorrow we are going to call the audiologist and make an appointment for a hearing test. So I can be armed when I talk to Dr. Kaylie. So I can ask him, if I need a cochlear implant soon, will we need to wait until the intracranial hypertension is under control first? Heck, couldn’t another hole in my head be a good thing? cause a little leak in there doc, just a slow leak…yeah….then I won’t need the shunt. hahaha
Does anyone out there run a fever at night? Or know why you might? I had all the test run recently…autoimmune, inflammatory…ect. all perfect. Even my fatty liver is not fatty. It has fat on it, but the liver itself is not fatty. Great news. No autoimmune markers….so yes, I am allergic to wheat, and intolerant to gluten, but I do not have Celiac. *sticking my tongue out at a certain doctor* Why am I swollen every morning? I had that answered by one of you lovely friends. Bed bound people retain a lot of water. So I’m trying hard to move more, but not move so much that my pressure gets all raised and I get a spiked headache. I’ve also cut way back on the salt.
Anyone else out there have hearing troubles? I know you are out there….do you think you will ever have to get a cochlear implant?
Normally when I’m not feeling great, I turn to my blog. When I’m happy and want to share, I turn to my blog. When I’m mad, I turn to my blog. Well, you get the picture.
Lately, I just haven’t felt like it.
I’ve thought of much to say, but it all sounds like a big jumble to me. No real coherent thought. I’ve been happy, sad, mad, confused, in pain, sick as a friggin’ dog (where did that saying come from anyway? Or Weak as cat pee? that person evidently never smelled cat pee!)…see what I mean…all over the place.
I do feel I owe an update. Today is day 12 of feeling like crap. I’ve decided to name my Slosh Head – Alvida – after a famous female pirate. My head feels like I’m living on a very rocky boat, I’m sure the first Alvida (often spelled Alvilda) spent many days on a rocky boat, hence the namesake.
Alvida cannot seem to get her “sea” (or in our case, very rocky land) legs. We wooble..but unlike the Weebles we can fall down.
I had a-n-o-t-h-e-r lumbar puncture (LP) on Monday. This time it actually appears they caught the high pressure before I had a blow out! It was the highest it’s ever been..then Dr. Gray said something that confused me (of course that’s pretty easy to do right now), she said, that the pressure doesn’t take into account volume, and my volume should be higher right now because of the excess fluid I still have after the surgery. So, can we trust this LP at all? She did a little testing. She added in 3cc’s of CSF (cerebrospinal fluid pressure), and I started to get a headache. She started to take some out, and I started to feel better, then she took out more and I felt weird. She took out 10cc’s all together. (I think that includes the 3cc’s she added….again, confusion).
"Hope" for Dr. Gray - Thank you for giving so many people hope.
I made Dr. Gray a piece of art. I’d been working on it for a while, if you’ve been on my blog Create To Heal you have seen it in progress. I still needed to color quite a bit of it, but I finished it just in time. She loved it! Just gushed. Said she was going to frame it and just went on and on. I’m glad it made her happy. She also said, we could come by and see her anytime, I didn’t have to be getting a hole in my back. LOL.
While in recovery I started to feel MUCH better. I could turn my head without getting sick, I was happy. Then I got up to leave. Ugh…not as good. After we got home and I ate dinner the world began to move again…Dang-it! But Dr. Gray said it would take some time for things to level out. She put me on a small dose of Topamax, to see if we can keep the pressure lower, we will up the dose as needed. Hopefully, we’ll figure this out and I’ll be able to move around soon with out triggering a full blown vertigo attack. Not feeling like I’m on a boat would be nice, but not spinning some every single day would be a miracle right now. 12 Days! TWELVE DAYS! But I can handle it. I know I can. If it ends up that this is the way it will be I’ll figure out a way. Perhaps I’ll need to wear a neck brace so I won’t move my head to fast? We’ll figure out a way that I can deal with it some how, some way. Wow, I just really surprised myself! I haven’t been feeling the most optimistic lately.
After the coldest night I think we’ve had in a very long time (it was in the 20’s F here), we went to the library the next day. Guess what we saw out front?
This photo was taken February 12th!
That’s all for now.
Alvida is telling me that she is not going to allow any more!
I’ve started a number of posts lately and haven’t finished any.
I’m having a rough time lately. I feel the darkness creeping over me, sucking the hope out of me. I’ve had this happen before, and I always pull myself out of it, but it’s hard. Right now, I just wish I wasn’t. (Don’t worry I’m not suicidal.) Sometimes, I just wish, I didn’t exist.
We watched It’s a Wonderful Life on Christmas, one of the only true traditions we have. We usually watch it on Christmas Eve, but we had a friend come over on Christmas day and we like to watch it together.
This movie usually gives me hope. It makes me believe that I could have made a difference and not known it. Just maybe I’m important in some way, that some things would be worse if I hadn’t been born. This year part of this movie hit hard. One of the last parts of this movie made me so very sad. Clarence, the angel, leaves a book for George Bailey and in it he writes, “Dear George, remember no man is a failure who has friends…..” George was surrounded by people who loved him, who he had helped in so many ways that they were all willing to help him, without even knowing what caused his troubles. (if you haven’t seen the film, George finds himself in a huge mess and considers suicide. Clarence, shows him what life would have been like if he hadn’t existed. It was a pretty grim picture. After he sees this, he wants to live, then he finds out that his friends all want to help him.)
I have been feeling I have a lack of true friends lately. Friends I can really call on. I know I have a few. However, not that many. Does that make me a failure?
I’ve had a couple of friends this year tell me I haven’t been a good friend. That I’ve ignored them and haven’t worked on our friendship. That was very hard to hear. Especially from one of them. I felt I’d been there for her over and over, we had been friends for years and years. (though not always in touch) All of a sudden, she felt she was giving all the energy in the relationship and I wasn’t giving anything. I think my illness, and my depression about it sometimes scared her. But I don’t think that was all. We are back in touch, but it’s not the same. The incident has never been mentioned. The other, I could understand how she could see things that way. But it was never intentional. And now, I feel odd about our friendship, and don’t know if it will survive.
I’m lonely, but I have a hard time being around some people. Losing my hearing is hard. Often, I’d rather be lonely alone, than in a room with people whom I feel isolated from because I can’t hear them. I do well one on one, but in groups…it’s so hard. I’m also having a rough time with envy. I want to be happy for my friends, and experience joy that they can do so many of the things I can’t. Sometimes I can do this, other times it just eats me up.
There are so many things that I’ve been having a hard time with.
I was reading back over my blog from this year, and my journal from last year, and found I’ve been on a sickness merry-go-round that goes something like this….hell – much better – hell – much better….over and over. I’ve been given hope and felt better and then had the rug pulled out from under me so many times I’m dizzy just thinking about it. (pun not really intended, perhaps I should say, dizzier?)
I keep thinking, even if this surgery ends up working, when will it stop. Will I have 2 months…4…12??? (Dr. Kaylie said to give it 3 months before we really judge it. This really takes a long time to heal.) When I had this on the other ear, I had 4 months vertigo free, then I had a spell of 11 days with a Meniere’s attack. Hearing down, tinnitus up, and vertigo on and off…for 11 Days! But caused by the other ear. Then I started in the Cerebrospinal fluid study, and things have been up and down since then. For over a year.
In the past 2 years I’ve had 9 decent months. Not a bad number, but they weren’t great of course, I’m just talking 9 months where the Meniere’s was better. 5 months where the headaches were better. And very, very few where my GI system was better. I even had a few where the pelvic and hip pain were better, but not many.
Speaking of GI issues. I’m still having diarrhea very often, and have gained so much weight. I’m not keeping much food in me, almost every time I eat I’m running to the bathroom. Yet, I’ve gone from 147 lbs in the beginning of 2010, to almost 200 lbs. now. (and most of that I gained in 2 months time, in the fall of 2010) I hate to look at myself, and the idea of people seeing me like this, or having my picture taken terrifies me. I grew up in a house where my father would often tell me I needed to lose weight, and would talk about others who were, what he considered, over weight. I knew even if he didn’t say it to my face, he would be calling me fat behind my back. (this caused a teen eating disorder) I haven’t seen him in long time, and won’t now. The idea of it, just hurts, I could not bear the thought of being told I’m fat, or knowing he would be telling others how fat I am. (BTW, this is not a man who has been in shape for as long as I can remember.)
So to sum that up, I do not have the Fructose Malabsorption under control. Elimination Diet started today!
We watched Despicable Me on Christmas Eve. One of our favorite movies. I think this was the 4th time we’ve seen it, and still laugh so hard. But it also makes me cry. This time more than usual. When he falls in love with those girls, and they become a family, it’s so touching. All I could think about was the fact that earlier this year we were making plans to become foster parents. Now we’ve given that dream up.
I’m still stuck in bed most of the time. When I get up I get the worst headaches! Also, I feel like I’m on a very rocky boat most of the time. It’s horrible. I’ve felt unsteady for a long time, but now, I walk a bit like I’m drunk. I have to walk very slowly. To top it off, I feel sea sick. Strangest thing about that – the only time I’m not feeling nauseous is when I’m eating. (is that weird or what?)
This is also a difficult time for me because my mother’s birthday was New Year’s day. It was such a special time when she was alive. No matter where I was, at some night club, or party, or what ever….as soon after midnight as I could I would call my mom and wish her a happy birthday! I remember one year I was at a bon-fire, and I had to drive about 10 miles to find a phone so I could call her. Now, most years, when midnight strikes, I’m just home. Stuart often doesn’t even make it to mid-night. He doesn’t like to be on the road on New Year’s Eve because of all the drunks. I understand, but it’s hard on me. He promised last year, this year we would do something special. We were going to check into a hotel, party in their and we wouldn’t have to drive anywhere that night. Perfect. But, as you can probably guess, we can’t do that. Plus, I’d probably be miserable because of my hearing troubles. So what to do?
I don’t like it when I get like this. (I logically know part of it is PMS, and I will pull myself out of it, but it’s a rough time.)
I’m certain I can deal with whatever the future has in store for me, but right now, I hope it doesn’t throw me another curve ball too soon. I need to catch my breath, and renew my outlook.
Now for the request.
As I’ve mentioned on here, I started a goal list for the Day Zero Project. You list 101 things to do in 1001 days. I have one thing on my list that should be easy, but it hasn’t been, and I was hoping you guys could help.
#26 on my list is to Make a list of 20 things that I like about myself and stick it to my mirror. (to be read every day)
I’d like to change that to Make a list of 20 things others like about me and stick it to my mirror.
Can you help? Can you tell me something you like about me? Not only will it help me check something off my list, I think it would help me during this dark time to hear some good things about me.
Today, we washed my hair! Wow, a bit of an ordeal, but it was worth it! I’m glad I have dry hair, but even my hair was beginning to get a bit gross after 17 days of not being washed! (I can hear the collective…”Ewwww” from all of you right now!) I did use a bit of the dry shampoo, but it didn’t work that great, it’s hard to use on long hair.
I wish I would have had one of these…in my size.
Now this would have kept the water away from my ear!! image from lulusoso.com
Recovery from the Endolymphatic surgery is still progressing, things are starting to itch! So it must be healing, right? and the little bit of hair they shaved is all prickly, it feels funny…and itches too.
I see my doc on Tuesday, so I’ll have a better update then.
Strangest thing, recently…past few days, I’ve been able to hear more. I had a headache and decided to sleep early the other day, I kept hearing this sound..thought it was tinnitus, but it was so strange, so I put in my hearing aid to see, and found out I was hearing the TV, very low, but still I could hear it! So I took my hearing aid out and got hubby to talked to me, I heard it! Yes, very muffled, but I heard it with my left ear, the one they just operated on, the one with 0% word recognition the end of November. Again, today, I took my hearing aid out of my right ear and could hear people talking, could understand…they were very close to me and have a good frequency for me…but I heard it! I’m flabbergasted. I know it could just be fluctuating again, but it’s strange.
The surgery on this ear has been so different from the surgery on the right ear. With the Rt. ear…no vertigo, a lot of pain, ear would drain a fluid (not bloody) but a lot of fluid, hearing dropped and never came back but stabilized so hearing aid helps a lot. Left ear… much vertigo, not a lot of pain, ear is draining blood (not large amounts most of the time, but blood not that clear fluid), and hearing seems to be improving.
I’ve realized that when we go in for surgery and ask the doctor what to expect, he can’t know for sure. Every person is different, and every surgery is different. I had the same surgery by the same surgeon on both ears, and the recovery was as different as could be!
I do hope they both have a high results rate! I really want to stop spinning multiple times a week…ummm day!
a great milestone today. (must make note, have to remember how important each little accomplishment is.)
Do you ever feel like you have accepted everything, are doing well, being productive….ect. Then have a dream of what you were like in your old life? That happened to me last night. I’ve been a bit melancholy all day. Next Post…I’ll tell you about it. Warning, it will be another T.M.I. post. Sex will be included.)
OK, today will be day 9 since they cut my ear from top to bottom around the back, and pealed my ear forward (basically, off), then they took a piece of skull from my head, and opened up the cavity a bit more, so my endolymphatic sac would have more room, and I, hopefully, will have much less vertigo.
That’s the jest of it, and as you can imagine, it takes some time to recover from this. A bit more than 8 days.
For a week, I had constant vertigo, could not even get out of bed to go to the bathroom. Then it started to settle down, I started to walk again, I believed I was on the mend (still do, but no thanks to me.) Yes, two days of improvement, and I think I can conquer the world…or at least the bathtub.
I’ve had a very hard time hearing recently …the past couple of days or so. I hear about every third word my husband says. I sound like a parrot who only knows hot to say, “What?” The TV sounds like it has a broken speaker. The tinnitus has been going crazy. I’ve been getting more and more frustrated. Not only because my hearing seems to be all wonky….in my right ear…my better hearing ear, but also because I am so tired of being dependent on someone else for everything!
Yesterday, I think a lot of the sleepless nights, and being a constant caregiver started to take its toll on my husband. He was worn out. I wanted something so badly, but I wasn’t about to ask him for it. I wanted him to rest, and I was already feeling bad about how I was treating him. When I get scared and frustrated…well, I sometimes start a fight. I think I just want to be in control of something.
So I got all hot under the collar, and got up and went in the bathroom.
And took a Bath! Yes, this is the part where you can say…ARE YOU STUPID, or CRAZY, or just what ever word you want to use to show I was not using the best judgement. But oh, the water felt so nice, I relaxed so much, I dozed off for just a moment…then Stuart came in to check on me. (what a guy, I blow up at him for nothing, and he still comes to check on me.) I thought, perhaps now would be a good time to soap up, rinse off, and get out of the tub while I have him there to watch over and help me.
All went pretty well, until I started to get up and out of the tub. Then it all fell apart! Stuart always wants to help, but I’m not a small girl, he only has about 30 lbs on me. So I’m always afraid he will hurt himself, or we’ll end up falling together. Plus…I’m like a kid sometimes…”NO, I can DO IT! Let me DO IT!” you understand.
Stuart was close, and trying to help me as much as I’d let him, and I slipped. My knee hit the bottom of the tub, both ankles bent under me, and I hit my head on either the wall or the side of the tub. I lost it. I completely broke down. Not because I was hurt that much, but because I did something so stupid. (When I say I completely broke down, I mean sobbing and heaving and not being able to catch my breath because I was so upset. I started to get dizzy, I started to feel sick….I had to calm down, but I couldn’t. I knew taking a bath was beyond my limits right now, but I just had to do it! How many times have I encouraged others not to do what I did tonight? To take care of yourself, to listen to your body? If you don’t take care of yourself, you won’t be able to help others… Did I practice what I preach? Heck no.
So now I have two twisted ankles, a bruised and slightly twisted knee, and a very small sore spot on my head. I’ve had my legs elevated and ice on everything. It looks better…we’ll see how it feels in the morning. (I really hope I haven’t sent my recovery backward.) It really doesn’t hurt any longer, I’m hoping it will all just be a bad memory in the morning.
Then to top everything off, I started to put on this oversized t-shirt I like to sleep in, and caught the neckline on my ear! Yes…that ear! Hours later and it still hurt. Luckily, I didn’t rip open the incision. Sturart says it looks good. A little red at the bottom, but I think that’s because it’s itching and I keep rubbing spot right under the incision so I won’t scratch it!
So the next time you think about doing something that you know your body really isn’t up to…take it from me…Don’t do it!!
Take care of yourself.
I hope my husband can have a little off time tomorrow or some day very soon. A friend is coming to visit soon, she wants to give Stuart a little time off….at least a few hours. (thanks Linda). I hope he will take it.
What bothers me the most about all of this. Stuart was already exhausted, then he had to save me, and take a lot of time taking care of me, all because I was just dumb.
Today I can get up and go to the bathroom on my own!!! Well, with a little help, and it wears me out every time…but walking those 10 feet is a great milestone after being stuck in bed for a week. To go from not being able to lift my head, to being able to walk those 10 steps to the toilet…what joy!
With Stuart’s help, we even brushed my hair today. I do believe a little family of mice were about to move in, they’d already made big nest! Thank you to whoever, invented the detangling spray.. Perhaps, Johnson and Johnson – No More Tears detangler…I have an off brand, but still no tears! It did wonders. The mice will not want to take up residence now!
The pain is minor to moderate, depending on the time. The headaches are still there, sometimes much worse than others. Pain medication or Maxalt seems to be helping with those. I’m still seeing blood from my ear, but nothing yellow, and it appears my temperature has returned to normal!
I really didn’t expect to have such strides so fast, but I’m thrilled that I was wrong. I know, I may have some set-backs. Especially since the feeling in my ear still isn’t completely back. Let’s hope that the severe vertigo stays away! (we even got my ear ring back in. I thought I wouldn’t see that ear ring back in. When I turned 35 I had my upper ear pierced, sill I know, but it meant a lot to me. So we took advantage of my ear still being a bit numb and put it back in!)
To close…a drawing I colored last night/today.
Christmas Tree - by w. Holcombe
…Welcome Christmas bring your cheer
Fahoo fores dahoo dores
Welcome all Whos far and near….
an excerpt from Dr. Seuss’ “Welcome Christmas Song”
Picnic with Ants 