Invisible Illness Week – 30 things you may not know…
September 10 -16 is National Invisible Awareness Week – If you’d like to get involved check out the official site.
30 things about my illness you may not know.
(warning, some answers may give too much information, but it’s not detailed)
See, I don’t look sick. This photo was taken in 2009, right before my first ear surgery.
- The illness I live with is: The main illnesses I live with are Meniere’s, chronic Migraines, Bipolar I disorder, and chronic hip and pelvic pain. If you are interested in my other illnesses please see the the tab above titled The Ants That Bite.
- I was diagnosed with it in the year: I don’t remember any more. I think I was diagnosed with Meniere’s in 2001, Migraines (I’m not really sure, I’ve had doctors tell me on and off since my teens that I have migraines, but they became chronic in my late 20′s…I’m 49 now), chronic hip pain and pelvic pain – they haven’t figured out what is causing all the pain, so no diagnosis. Bipolar I – 1990 then was told they were wrong – re-diagnosed in 1994.
- But I had symptoms since: Meniere’s – the first attack I remember was in 1993. Migraines – the first one I remember, I was 11. The pelvic pain – in my early 30′s, in the mid 1990′s. The hip pain – 2008. Bipolar – in my teens.
- The biggest adjustment I’ve had to make is: These are a few major ones for me…. Losing my hearing. Not being able to drive. Not seeing my friends like I used to. Realizing that I will never be cured. Not being able to have a sex life without pain. (but I’ve dealt with, or am dealing with all of these. They will not keep me down.)
- Most people assume: I can do much more than I can, after all, I don’t “look” sick. And some assume I use my illness to get out of social situations, but honestly I hate being so solitary
- The hardest part about mornings are: Never knowing what the day will bring. I often wake up with a blinding headache, I know what that day will bring. But if I wake up feeling decent I never know if I’ll continue to feel that way, or if I’ll be hit with a Meniere’s attack or Migraine. However, I try to make the most out of every day.
- My favorite medical TV show is: Ummm, funny, I used to watch some medical TV shows, but I don’t any longer. I think I see too much of the medical community in person.
- A gadget I couldn’t live without is: I suppose I could “live” with out most gadgets, but there are some I wouldn’t want to! My Cochlear Implant, I can hear so much more now. My laptop -so many of my friends are in there!
- The hardest part about nights are: Trying to sleep, and trying to stay asleep. Fear. Fear of having an attack just as I’m falling asleep (this happens more than I’d like to admit), fear of waking up with a blinding headache……However, each night before I sleep I acknowledge my gratitude for the day, and plan what I’d like to do the next day. I always have hope I will have a good day, and if I don’t I still know I’ll get something out of it.
- Each day I take __ pills & vitamins. (No comments, please) 18 daily (this included the total number, not different medications), 5 as needed, 4 vitamins daily, and one B12 shot a week.
- Regarding alternative treatments I: have tried many, including chiropractic, acupuncture, certain vitamin routines…. I found medical massage helps my migraines and hip pain a lot. I also use a special diet to treat gluten and fructose intolerance.
- If I had to choose between an invisible illness or visible I would choose: I don’t think anyone would choose to have an illness, but I’ll deal with the hand I’ve been dealt.
- Regarding working and career: I don’t work. I don’t have a career. Takes a lot out of conversations with others. My doctor suggested I look into filing for disability, but I haven’t done it yet.
- People would be surprised to know: I often don’t wash my hair for a month or more. Water on my head is a trigger for me, especially if I have to close my eyes. Luckily, my hair is pretty dry, and it’s long so I just tie it back.
- The hardest thing to accept about my new reality has been: There are a lot of times I have to say” I can’t” or “no” to people…and to myself. Losing most of my independence. Not being able to drive. And not being able to have a normal sex life.
- Something I never thought I could do with my illness that I did was: Find the positive. Become my own advocate. Fire a doctor.
- The commercials about my illness: The only one of my illnesses I’ve seen commercials for is Migraines. Commercials are always drug companies wanting you to talk to your doctor about their drug. I’m not comfortable with this, and normally the side effects they list are pretty scary.
- Something I really miss doing since I was diagnosed is: I miss being able to go places alone. (the answer to this question changes often, but right now, not being able to go anywhere alone is very difficult.)
- It was really hard to have to give up: My hearing. Even with technological help, I have a cochlear implant (CI) and a hearing aid, it is still very hard to hear at times. I know my hearing with the CI will get better, but it has been very hard to loose all my hearing in one ear, and almost all of it in the other. Without technology, I can’t hear anything.
- A new hobby I have taken up since my diagnosis is: Blogging. Reading a lot! I’ve always liked to read, but now it’s almost an obsession. (thank you to Kym for my Kindle! Oh. another gadget I wouldn’t want to live without.)
- If I could have one day of feeling normal again I would: I would be so very thankful!! Then I’d spend a day pampering my husband, in and out of bed. ; )
- My illness has taught me: To be my own advocate. To be more tolerant…I thought I was tolerant before, but I realize I needed a wake up call on that one. That I’m not alone….this one relieves me because I needed to feel that someone understood, but it makes me so sad that others have to go through what I have. And that I can handle much more than I ever thought I could.
- Want to know a secret? One thing people say that gets under my skin is: Any form of, telling me I’ll get better. “When you get better….”, “You will beat this….” NO, I won’t. This doesn’t go away. I may be able to find something to make it more tolerable, but it will never go away. And often treatments that work, stop working. I also hate it when people say, “You don’t deserve this” I know they are trying to be kind….but I never thought I deserved this! And one more….”But you look so good.“
- But I love it when people: Tell me how they are doing, want my opinion, want to talk to me as a friend…..Don’t get me wrong, I don’t mind if someone asks about my illness, if they are interested and want to know more about it. But, sometimes I feel like people forget I’m anything more than my illness.
- My favorite motto, scripture, quote that gets me through tough times is: This may not be the life I expected, so I’m changing my expectations. I don’t know if this is a quote or anything, it’s simply something I thought one day and it has helped me through accepting a lot of things that have had to change.
- When someone is diagnosed I’d like to tell them: Often people who have been recently diagnosed find my blog and it scares them, so I start off telling people: Everyone’s journey with Meniere’s is different. Most do not get to the stage I’m at, so please don’t think you are going to lose your hearing….or any number of things I’ve been though. I’m in the very rare group. I let them know there are many treatments to keep Meniere’s under control, and point them to sites and other bloggers who can give a different perspective. Most importantly, I assure them, they are not alone. They can contact me any time, and there are online groups.
- Something that has surprised me about living with an illness is: That my husband and I have gotten even closer. Thank you to our therapist, I think having to go to a therapist about all of this surprised me too. I was not handling losing my independence very well, and hubby wasn’t communicating very well. But by going to a therapist we began to communicate out needs much easier, and recognize our needs. Another big surprise is that people will reach out to me. I’m very surprised that I’ve touched people, and made some honest friendships with people I’ve never met.
- The nicest thing someone did for me when I wasn’t feeling well was: (This does not include things my husband does for me) Come to visit me. It doesn’t happen often, but I do enjoy other people’s company. I hate that I often have to cancel when someone wants to do something with me. I’m already so isolated, and if I have to cancel people often think I don’t want to see them, or I’m just too much trouble. I don’t blame them, most of my friends have families, and they have to work their schedule around a lot of things. So missing a visit makes it harder to make plans the next time.
- I’m involved with Invisible Illness Week because: Because I have more than one. Some people I love and care about have invisible illnesses. We need to let people know we are still people, but don’t judge us by how we look.
- The fact that you read this list makes me feel: That you care, and maybe you understand some things about me you didn’t before.
A Day of Wonders (Cochlear Implant activation)
Tuesday, July 31st, I woke up to this beautiful site:
Tulips from my hubby! What a wonderful surprise!!
I had an appointment with Dr. Kaylie to check my incision at 1pm, and then I saw the audiologist immediately afterward.
Dr. Kaylie was pleased that I didn’t have as much pain or vertigo with this surgery. The incision looked great, and all was a go for activation….well, to get my processor. Dr. Kaylie already checked to make sure the Implant was working when I was in surgery, so that wasn’t a worry. The implant was already working, but I couldn’t hear anything without the processor. It was time to get the processor. So off to see Sara, my audiologist.
It was very interesting to have the processor hooked up. At first I just heard a series of beeps, (that’s what I was supposed to hear). She was determining the volume each frequency should be. Then I was able to hear speech, and when I first heard her talk I busted out laughing! She sounded like a cartoon, then I heard Stuart speak, and he sounded like a cartoon…heck, I sounded like a cartoon. I kept giggling every time someone spoke. Everyone still sounds cartoonish. A very silly cartoon, like on Rodger Rabbit. It’s amusing but also quite difficult. Sara reassured me that all of her patients tell her that it gets better, but everyone is different. My brain has to be trained to hear a different way. Now I’m not hearing as a normal person, I’m hearing by having my auditory nerve stimulated. That kind of blows my mind. (I know my hearing will get better and better as time goes on, but I also know I may never hear like normal ears hear any longer.)
You would not believe how much stuff I got with my processors. Two HUGE boxes full of stuff.
These are the boxes all the parts came in. The coffee cup is in the picture to show scale. It’s a regular sized coffee mug.
This is some of the pieces for the Harmony processor. Yes lot’s of extra stuff. I’m so confused by how I’m going to organize all of this stuff….just look there’s even more in the next box…and this doesn’t include things I’m using, like the processor, and the battery chargers…ect.
This is some of the items that came with the Neptune processor. This is the processor that can be waterproof, and it clips on instead of going behind the ear….but all this stuff, I have to figure a way to organize it, and understand it all. : )
I was joking in the last picture, I was shown what everything did, I just need to work with everything to make sure I understand how it works without anyone telling me, or me having to look it up. Especially all the connections to hook the processor straight up to the iPod, or things like that. The different ear hooks for different things with the Harmony. All the accessories just to make it different looking and some to clip the Neptune on to me, like an arm band and a lanyard…ect.
I have a drying box to keep the processors free of dampness. Each processor came with one, but I like one better than the other. There are different carrying cases, but neither will help organize all the pieces. I feel like I got some very useful items, some fun items, and some useless items. But it’s been like Christmas for a couple of days just playing around with all the pieces and figuring out how to wear them.
Here’s some photos of me with my CI hooked up with the different processors :
Me with the Harmony processor on….I was playing around with the different colored pieces you can snap on to it. The part that hooks to my head….by a magnet…that’s green, I have that in white, black, red, brown, and light brown….and of course lime green. Where the blue is, I have some funky snap on parts there, they are all silly – stars, rockets, rainbows…ect. Or I don’t have to wear one and it will be a light brownish beige.
This is the Harmony from the side. I have the larger battery on the processor in this photo, so the back part (where the blue is snapped on) is longer than it is with the smaller battery. Of course the larger battery last longer than the shorter one….about 4-5 hours longer I think.
This is me with the Neptune on. I just clipped it to my shirt to show what it looks like. When it is waterproof, it’s actually smaller (you take the controller off, so you can’t change the volume or anything when you are swimming, but who would have time?)
Please excuse the way I look. No makeup, in a sloppy t-shirt…and taking photos of myself. How atrocious! haha
So there you have it. Me and my Cochlear Implant with the 2 processors I picked out.
Remember, picking out a processor is a very personal thing. I would never say mine is the best, if you are getting a cochlear implant, do as I did, read up as much as you can on all the ones available, then decide which one will fit in you the best.
Also. Everyone has different experiences with their CI. I’m hearing words, some people do not hear words when it is first turned on. Others hear words that are much clearer than what I am hearing. Some of it depends on how long you have been deaf, I don’t know the other factors…I just know we are different. So don’t think my experience is the same experience you will have.
The wonders continue!
OH….I did hear my cat purr last night, and it sounded like purring! I was thrilled! The one sound I’ve had a hard time getting used to is my own breath. I feel that’s strange….hopefully I’ll get used to it soon. Breathing shouldn’t be this loud….should it? I’m sure it’s something that will end up just going into the background. I remember when I got my hearing aids the sound of my hair brushing against them drove me crazy….later I didn’t even notice it.
Photo Op! Cochlear Implant
Getting Prepped for Surgery. (photo by Stuart Holcombe)
My Surgeon’s Signature. Marking which ear they will be operating on. (photo by Stuart Holcombe)
I’m a FALL RISK! When you have Meniere’s as a diagnosis, you are pretty much so labeled a FALL RISK. Funny, I don’t really see where they do anything different. I did get an escort to the bathroom, but if I had fallen, she wouldn’t have been able to hold me up! I think I’ll keep the bracelet and just keep putting it on when I go to Duke, no sense in wasting them. : ) (photo by Stuart Holcombe)
At home, tucked in my bed with Monkey after surgery. Sorry photo is a bit dark, but I didn’t have time to adjust it.
photo by, Stuart Holcombe
Taken 7/23/2012 – The oily part and yellow part is the stuff they put on the protect the wound until it has healed enough….I get to wash my hair on Thursday. I do not have any stitches to take out, all will dissolve. (photo by Stuart Holcombe)
Another view of incision. It was hard to get my hair in this position to show how much was shaved. It is very easily covered up.
photo by Stuart Holcombe
Surgery went “Perfect”
Sorry I haven’t posted, and unfortunately this post won’t have photos, I promise they will be coming soon.
My surgeon told Stuart that my surgery went “perfect”. Yay!
Of course, I’m a weird patient….I had a reaction to the antibiotic. Not a severe reaction, but I looked like a clown. I had very red cheeks. Nothing serious, and it faded the next day, I didn’t even have to change my antibiotic, but we had to keep a watch out for a little while.
I also had a reaction to the adhesive they used to attach the heart monitor to me. I looked like I had huge hickies from an octopus hugging me. But again, nothing serious.
The pain isn’t bad. But it is there. Yesterday was worse, probably because I hate taking pain medication and was tired for feeling drunk. I am swollen, but I think it’s better than it was yesterday. I’m very tired, and I’m having some killer migraines. That’s why I haven’t posted before now. The migraines made it way too uncomfortable for me to look at the computer.
So….everything is fine! I’m doing well!
My Cochlear Implant will be activated on the 31st.
I’ll get photos up as soon as I get them off of my phone! They look much like the photos from the endolymphatic sac surgery…same smiley cup and everything. Wait until you see how much hair is gone! (really, not much at all, you can barely tell!)
off to sleep some more.
Thank you all for so many get well wishes.
One Week until Surgery
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.
This is what will be going in my head:
Cochlear Implant from Advanced Bionics. http://www.advancedbionics.com/us/en/products.html
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?
We can make it, one day at a time. : )
Sleeping
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. : )
Cochlear Implant coming soon….
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!)
Wendy just write…. #HAWMC Day 12
Prompt for today Stream of Consciousness Day. Start with the sentence “_______”just write, don’t
stop, don’t edit.Post!
(written April 5th)
image courtesy of http://www.thechicagobridge.org/
“Wendy” just write, don’t stop, don’t edit. Post!
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? You’re Breaking Up…
Let’s talk a little about hearing.
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?
I just haven’t felt like it.
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!
Here’s to getting my sea legs…I hope.
