Day 23

On February 25, 2012March 9, 2012 By WendyIn Chronic Illness, CSF, Fructose Malabsorption, Headaches, Meniere's Disease, Migraines, Pain12 Comments

*first….I’m having trouble with my blog, I’ve written WordPress but don’t know what’s going on yet. I cannot post any images or tags. Sorry*

Last night I started on Diamox, per doctor Gray’s instructions. Still talking a little Topamax, I have to wean off of it.

I admit I still wasn’t feeling great in the evening, well I haven’t felt “great” for a long time, but I wasn’t feeling good. We decided to watch some things on Netflix because I was afraid to go to sleep. First we watched Donkey X, a silly animated movie about Don Quiote and Sancho as told by Sancho’s Donkey….OK…that’s the very short synopsis, but really that’s not why you are reading this post is it? Then we watched a number of old Dr. Who’s – the old one’s with Baker…if you are a geek/nerd type then you know Baker is the Doctor who had the very long scarf and the curly hair. (perhaps the most famous Doctor of all – unless you are under 20, then it would be David Tennet) – again, not why you are reading this post huh?

Finally, I decided to try to sleep. I have found I feel a bit better if I’m not lying flat. So I propped myself up a bit and I do believe I was asleep before my eyes were shut! I woke up about 4 1/2 hours later with a headache in about the 4 range. A 4! OK, for those of you who don’t realize what I’ve been going through (here is where I really wish I could post photos), I have been in the 7-9 range for days. Occasionally hitting a 6, and if I hit a 5 I was pretty doped up! I was so happy. I thought, “Yes, this is going to work!” Then I thought, “Well, this means I definitely have high pressure.” You see, if I didn’t have high CSF (cerebrospinal fluid pressure) this drug would have made me feel much worse, so I took a great risk taking it, but I was willing to try ANYTHING!

I decided, to try a little experiment and lower my head a bit, I woke up at about 9:30am, and my headache had climbed to about a 6, I should have taken a pain pill, but didn’t want to do that on an empty stomach. Unfortunately, I didn’t trust myself to go downstairs to get anything, and Stuart was too exhausted to get up yet. So I went back to sleep. When we woke again, my head was back to an 8. Stuart made me some breakfast. I ate, took my morning medications. Including the Diamox and the little bit of Topamax. Shortly afterward the world started to spin. Luckily, if I stayed very still on my right side it was almost still. So I dozed. But if I tried to move it went crazy again! (and oh how I had to go to the bathroom! Isn’t that always the way?) This last over 2 hours.

My headache has been around 7 -8 most of the day unless I took a Maxalt or Hydrocodone, then it would ease to a 4 or 5. But I feel much more dopey when I take those than I used to. I wonder if they Diamox makes them more potent, or if it’s just because I’m sleep deprived. Unfortunately, often when I try to sleep I start to spin. That just happened a little while ago. I gave up and decided to update all of you.

All and all, I take last night as a good sign. Perhaps we can get this medication worked out and I can at least get things under control enough so I can get out of bed! It’s horrible. I have 2 people living in my house and I haven’t seen them in days. I’m still lonely. It’s sad really. But it’s hard. People don’t want to intrude when I’m like this. I admit I don’t like for people to see me when I’m having a vertigo attack, or in horrible pain…but I am lonely. Thankfully, I do have Stuart, and he tries so hard to keep me entertained. : )

I’m not crazy about being on Diamox. The side effects aren’t fun. Well, two in particular. One is this tingling sensation. Kind of like when your hand or foot starts to go to sleep, but not quite..and it’s just an icky feeling. The other is brain fog. Often very intense brain fog. So we’ll have to see if I can deal with that.

I will say, either the Topamax or the Diamox (these two drugs are in the same class) is already reducing my appetite. Thank goodness, I needed that! I weighed in at the doctor’s on Wednesday at 200.9 lbs. I NEVER thought I’d ever see 200lbs. I’m only 5′ 4 1/2″. I do realize it was the day before I started my period, and I was fully clothed in jeans and tennis shoes, but that should only take away about 5lbs. I was happy today to feel like my appetite was much more back to normal. Ever since I started having trouble with this fructose intolerance I’ve been so hungry. Having cravings I just couldn’t satisfy. Top that off with not being able to exercise. I gained about 55 lbs. Now it’s time to take that off!

Anyone out there want a weight loss buddy? As soon as I can do any exercise at all I will be easing into something slowly. Stuart surprised me, he’s looking into getting a therapeutic pool. I don’t think we can afford it. But it sure would be nice. First things first, I need to get this vertigo under control first. Can’t be getting in water when I can’t see straight. : )

OK, as you can tell, I am sleep deprived and just rambling.

with no photos…my posts are a bit boring huh?

I leave you with this…..

Draw the Shades Today
Migraine Pain Robs One of light
New Meds Can Give Hope

22 days…

On February 24, 2012March 9, 2012 By WendyIn Chronic Illness13 Comments

Trying desperately to hold on to the computer and write these words. Concentrating up close sometimes helps…today I’m not so sure.

Here’s a Haiku that probably breaks all the rules, but bear with me today….it’s been a really rough few weeks. Last night and this morning being the worst.

Migraines,Vertigo – Bad!
Weeks full of pain and spinning,
why can’t someone help?

My symptoms have changed. Doctors look more confused when they look at me. That’s disconcerting.

As you know I saw Dr. Gray, my pressure was a little over 21. That was what my closing pressure was the last time when I felt my best…confusing. She mentioned that pressure doesn’t take into account volume and my volume was higher because of the excess fluid from the surgery..so does that mean my pressure was high or low? She’s thinking high. I wrote about this earlier, I think, so I won’t go into it again. But I do feel like I’ve kind of stumped her….maybe just a little. I do wish I was one of those patients who’s tests were more cut and dry. Here, let’s take this blood test…oh you have this, take this and feel all better. Or at least, you have this, here’s how we’ll treat it, but I’m sorry it won’t go away. I can handle that. But this. I’m having troubles with.

I really understand now how my friends feel who have no diagnosis. Like Allison and Maureen who know they have some vestibular issues but have no idea what it is. I just keep thinking…why can’t they fix this?

Yes, I have Meniere’s we all know that. But these migraines are much worse than they used to be, and the vertigo is very un-Meniere’s like. I keep having positional vertigo. That doesn’t go along with Meniere’s. (and why did I have the 5 months of no symptoms last year?)

The other night I had vertigo all night long, but I was alright as long as I lied on my right side. At first I didn’t realize this, I happened to be on my right side, everything was calm and I went to turn over, I got half way there and screamed. I actually screamed. I scared myself, I had no idea the scream was coming out of my mouth. So back to the right side I went, but that is the hip that is in constant pain so that was not the most comfortable position to be in, however, if I moved, I started spinning. Finally, I fell asleep, and you can guess what happened, I turned over in my sleep and woke up spinning like crazy. Ahhhh! It was a long night.

I saw the neurologist who is a headache pain specialist on Wednesday. She looks like a Pixie. : ) She seems very intelligent and knowledgeable about my case, and migraines. But she really didn’t look like she had knew what to add at this point since Dr. Gray had just seen me and added the Topamax we kind of needed to see if it will work first. She said to continue the Topamax Dr. Gray prescribed but she wants me to ramp up slower until I hit 200mg. So I went from 50 to 75mg Wednesday night. Last night was one of the most painful nights I’ve ever had. My headache pain was at a constant 8 or 9. At one point it reached a 10 but I was too weak to ask Stuart to take me to the hospital. I kept ice on my head, and kept drinking water. I was so very thirsty. I could not keep my eyes open. It was a strange thing, I didn’t feel like I couldn’t’ stay awake, I felt like I couldn’t stay conscious. I had horrible dreams, in which I would just sob and my head would pound. I know the dreams were caused by my headaches, but they were so disturbing. In one Sandy was bitten in half by Alligator, and was still alive and suffering. See horrors!!

Today Stuart has called all 3 of my doctors. If you are seeing 3 doctors, who do you call when things go so terribly wrong? First he tried Dr. Atkins, but we didn’t get a direct line to her nurse so he had to leave a voicemail in the generic mail box for the whole practice…who knows when she will get that message. He called Dr. Kaylie. He said, he thinks I should get another LP (lumbar puncture). oh joy. He called Dr. Gray. They had a long discussion the consensus is that I still have high pressure. She wanted me to come in tonight but it was 4:30pm and she still has 2 patients so she didn’t think it would be wise, so she is talking about Monday. However, she wants me to take some Diamox tonight. She said that will tell us if this is high pressure or not. I was in tears, my head pounding as Stuart was on the phone…I yelled, “Fine whatever, just make it stop!!”

Of course, now my fear is, it will just make it worse.

I won’t deny it. I’m scared.

I’ve had vertigo every day for 22 days. No not constant, but at some point during the day for varying lengths of time I’ve had vertigo every day. The severe disequilibrium is not as debilitating, but it’s not picnic. And I think I’ve talked enough about the headaches.

The Good, The Bad, and The Ugly – all in just a few days.

On February 5, 2012 By WendyIn Chronic Illness26 Comments

This is not the post I’d planned to write, but life has thrown me for a loop so I’m telling it all….

The Good

On Thursday it was a beautiful day. The weather was perfect with temperatures in the 70’s F, and clear skies; an amazingly gorgeous day for the second day of February. I decided to take a drive for the first time since June. I haven’t had vertigo for over a month so why not? I went to a small town just north of us, it wasn’t a long drive and I chose that route because there is very little traffic on the road. The top was down in my little car, and I had a blast! What a milestone!!

Not so good – we went to our ASL (American Sign Language) class Thursday night. This was our second class. I’m not sure I’ll go back. I keep telling the teacher and the students I’m hard of hearing. I’m so very lost in the class because i can’t hear what’s going on. If Stuart tries to tell me what I’ve missed then he misses something. I was so upset, I teared up 3 times, and came very close to just walking out. To explain some of my frustration,, we have exercises where we each say things in sign language. Then the teacher will call on someone to translate what the person said, I couldn’t hear what the person was saying so I have no idea if I understood what the person was saying in sign language. (note, this is just one example). I do not see how I’m going to get anything out of this class. Stuart is going to write the teacher. One huge problem, they allowed too many people in the class. So there are 16 people in there and I’m the only one who is hard of hearing. I feel so isolated and sad. The one place I thought would be more understanding, and help me, is simply ignoring my needs.

The Bad

Friday I had slosh head all day, and was afraid I was catching a cold. The weather had changed, and we had cleaners come in on Thursday (I’m sure they kicked up a lot of dust), so I wasn’t that worried about it. Probably just barometric pressure change and allergies. Yesterday, I had minor slosh head, better than the day before, still didn’t think much of it since it was now raining. We decided to go out and do some things. When we were in Earth Fare (a small healthy grocery store), I turned to look at Stuart and the world spun around. I tried to brush it off as a little disequilibrium but couldn’t. We went to the little cafe they have so I could get something to drink and take my pills. I sat for a little bit but things were not getting better, I had the overwhelming desire to curl up on the floor. We hurried and bought our little bit of groceries and headed home. Once in the car I was still feeling horrible and got Stuart to search around for something I could throw up in if I needed to. I then took another Valium. I don’t normally take them so close together, but we had a 25 – 30 minute drive home, and I did not want to have a severe attack in the car! Wonders upon wonders it worked. When we got home I was still pretty off but I knew the worst was not going to happen.

The Ugly

** some of the following may be too graphic for some readers.

Today I was just waking up and stretching when I felt my husband kissed me. A pretty nice way to wake up huh? The first thing I really noticed was how loud the tinnitus was. My head was still a bit sloshy, and today it was also screaming at me. Since I was a bit off, Stuart made me some breakfast and brought it up to me. (oh, I have to admit he does this a lot any way…what a guy!). After breakfast I felt exhausted and thought perhaps I should sleep a bit more. I put my sleep mask on and started to doze, suddenly I felt like I was moving. Stuart walked in the room and I told him, he grabbed me some pills. I had to go to the bathroom. He helped me there and left, but I ended up having to call for him to help me. I couldn’t stand, pull up my undies, or anything. He rushed in and helped me and nearly carried me to the bed. By then I was in full spin. I grabbed a second Valium (it worked the day before!) and Stuart helped with a Phenergan suppository. *ick*

I kept trying to focus on one spot but the spot kept moving around and around…I was getting sicker by the moment. I was nauseous, but hadn’t had the tell-tell sign of the extreme heat that usually precedes the vomiting. Oh…but the diarrhea….I knew it was going to blow if I could make it to the bathroom or not. I also knew if I moved my head enough to get up and go to the bathroom I was going to start throwing up. What to do? I was getting pretty upset by this point…all the chanting of affirmations and envisioning myself as a tree with strong roots that cannot be moved were not working…I was starting to panic.

My dearest darling husband created the portable bed pan (a trash can with a liner) once again, like he did when I was stuck in bed for a week after surgery not able to raise my head. So I scooted my butt off the bed over the trash can, keeping my head very level…and exploded! Oh my gosh, I had no idea that was going to happen. Sometimes the suppository makes me really feel like I have to go, but it just dispels what’s left of the suppository and a little bit more. This was gross. I was so embarrassed and just completely grossed out. I kept apologizing and crying a bit. After that ended, the vertigo started to subside.

Stuart was so wonderful. He told me he’d much rather deal with the bed pan situation, than for me to throw up. He said it’s so much easier on my body. And he’s right, but the diarrhea in the make shift bed pan, and having to have him clean me up…that’s much higher on the embarrassment scale. I guess I just need to get over that, and I’m so grateful I have a husband that will do anything to help me feel better. He’s very right though, the vomiting is terrifying, and much more painful. So I’ll swallow the embarrassment I guess.

I’m still slosh headed, and feeling a bit wonky. I’m exhausted, have napped a bit on and off, but I keep waking up feeling worse.

When we walked out of the store yesterday, with Stuart helping me hobble to the car, I said to him, “Well, the surgery is supposed to make the vertigo 70 – 90% better, they never said it was gone.” Very stoic of me, holding it all together. However, once we were in the car and on the way home, I broke down. I thought about how I drove just 2 days earlier, what if this had happened then? I thought about how all I wanted to do in that store was curl up on the floor and pray for the room to stop. What if I had been alone? I feel like every time I feel I’ve made an advancement and can make some plans, the floor falls out from under me.

Even more reason to live every day as it comes! I do not regret my drive, and I wasn’t far from home. If I had gotten sick, I would have pulled the car off the road and called for help. I would have handled it! If I had been at the store alone…well, that would have been more difficult. I probably would have taken my pills and left the groceries. Gone to the car and called for help. I’d rather be alone in my car dealing with this than in a public place. I may worry, but I’m confident if the worst happens I will be able to handle it.

Good Days, Wonky Days, and Great News

On January 13, 2012 By WendyIn Chronic Illness13 Comments

What shall I start with… How about the GREAT NEWS!

Stuart accepted a job yesterday. He had two companies make offers and it was hard to choose between them, but he chose the job that allows him to telecommute. I believe his title is Senior Software Engineer at MEDSEEK. (he’s been working with the medical industry for a long time and enjoys it. Hopefully, he will be very happy in this new position.) We’re excited! He starts on the 23rd.

Also good news, Stuart’s sister had her second child today….well technically yesterday. He will be sharing the same birthday as my sister. (I hope that doesn’t jinx him, at least I’ll never forget it!) His name is Johnathan David…after his grandfathers. Looking forward to pictures.

I’ve had some good days, today was a pretty decent day. We got out of the house, and went grocery shopping. Yes, I was excited about that! I cooked a great meal a couple of nights ago, and am looking forward to cooking more often.

However, I’ve had some Wonky Slosh Head days too. The 11th…not a good day. It was overcast or raining all day, and my head felt like it was full of goop, and my brain was sloshing around inside of it. For the first time in weeks, I felt I needed help walking.

Today, I had the strangest tinnitus. I always have some sounds, and at times they can get pretty obnoxious and just odd, but this time I could feel it. What comes to mind is the poem, “I heard a Fly Buzz” by Emily Dickinson, luckily I wasn’t dying. However, I could also feel the thing in my ear. The vibration was so annoying…and dang it all…strange. I sincerely hope I do not have that sensation again.

My hearing, is also strange. The ear I had operated on in December had 0% word recognition in November. Now it’s fluctuating, a lot! Sometimes I hear nothing out of that ear, sometimes I can hear Stuart talking when I don’t have my hearing aid in the other ear. And I promise I’m not hearing out of that ear! Speaking of that ear, I think my hearing is dropping and/or simply getting more distorted.

ASL the hand signs for the letters A-S-L American Sign Language. — the sign for ASL (American Sign Language) - photo from Lee Clarion University where ASL counts as a Foreign Language Credit

I’m so happy we are starting our ASL classes in 2 weeks. I really need a back-up way to communicate.

I have a question, for those of you with Meniere’s. How many of you were told you would have “burn out”? I learned today, from a hearing loss specialist, that they no longer believe burn out happens. I’m involved in an email group from The Say What Club (SWC), they have a few groups for people who are Deaf or Hard of Hearing. I’m a member of the Meniere’s Group. Everyone on there has some pretty profound hearing loss. I’ve found that a few on the board are a bit older than I am. I know one man is 76. No one has experience “burn out”. Only one member has no vertigo any longer, and he had Streptomycin injections, so he had no balance center.

On another note, there are a few on there who have Cochlear Implants, and love them, they say they are they are much clearer than hearing aids! I’m beginning to look forward to the time when I can get one. Then I think, I may just want to embrace the deaf world. I’ve been pretty conflicted. Then I thought, why do I have to choose? I think I’ll probably do a bit of both. If I can get a CI, I probably will. But I want to know ASL and be involved in the deaf community too. You never know when technology may fail.

Coming soon…learn all about a different part of my life. Bipolar I Disorder and Me.

Hard to believe it’s Winter.

On January 8, 2012 By WendyIn Chronic Illness16 Comments

Volkswagen-New_Beetle_Convertible_2003_on the road with the top down — Sorry, Not an actual photo of us, but I'm sure you can feel of the sensation! Whee!

On January 6th, and 7th, we went driving around in my Little Yellow Bug with the top down! That’s right, the convertible was being used with the TOP DOWN, in JANUARY! Woot! Last winter was full of snow, and rain, and ice…and well it was just miserable. Much colder and much more snow than North Carolina normally has. However, if there is one thing I’ve learned about living in the South East, weather is anything but normal.

This winter has been mild so far, just a few freezing days, I think I could count them on one hand. I’m loving it, but it’s odd, even for N.C. We will often have a warm patch in the winter, but this is like Spring. The plants are so confused. My herb garden has new growth, my neighbor’s Irises are coming up, yes, the people and plants alike love this weather, but I’m afraid the plants will suffer greatly when the freezing days arrive again. It looks like it will be cloudy and/or raining for most of the week. I bet it turns cold after that.

Pink Wildflower from my garden 2011 — I took this photo from our wild flower garden, Fall 2011

I’ve been feeling better than I did before the surgery, some days I feel really good! Like yesterday, it was a good day. We had to do a little shopping, so we put the top down, and took the long way through the country to the store. It was blissful. We came home and I worked in my studio for an hour..maybe two. Earlier in the day I threw some things in the Slow Cooker, so I even made dinner!

I’m still having a lot of GI issues. I can’t figure this fructose thing out I guess. I finally found a book I’ve been told will help me so very much! The book is not available in the U.S. (at least not yet.) It was published in Australia. I started to give up and order it from Australia, but it would have cost me close to $70 with shipping and tax. I just couldn’t do it. Finally I found the book at a used book store on-line, thanks AbeBooks. For less than $45. They only had one copy. I snapped it up! So I should get it in a couple of weeks. I also found a nutritionist who is “well versed” in Fructose Malabsorption and the low FODMAPS diet. Woo Hoo! Finally! I may start seeing her later this month, or early next month. I want to see what the book says first. This running to the bathroom 6-10 times a day is old! I’m really tired of my GI system just refusing to work right. **TMI time…I had a rush moment to the bathroom today, I’d already been 4 times, this one was very loose and black…yes, black. Scared the crap out of me (pun intended) . I thought OMG I’m bleeding internally. Then I remembered I took Pepto Bismol last night, a bit more than I intended to. Please, if you take Pepto, remember it can turn your stools black, and your tongue a funny color too, but I’ve only had that happen once. So don’t let it scare you….like it seems to always catch me off guard.

Today, I have Slosh Head. I feel stuffy, and woozy. I’m nauseous most of the time lately. If I’m eating, the nausea is relieved, but shortly after I eat it returns. ick. But today is worse. The tinnitus is screaming, my hearing is down! (I only heard 3 dings..barely..when I turned my hearing aid on, I normally hear 5…they are different frequencies, so I’m not hearing some of them) The TV sounds tinny, Stuart sounds muffled. I just don’t feel good at all today. I feel like Mr. Meniere’s is battling with Allergy Man and Human Barometer is getting his licks in too! All inside my head..and tummy! Just ick.

**GREAT NEWS** Now the reason I can even consider spending money ….Stuart has been offered a job!

Actually he’s negotiating with TWO companies. One is telecommuting, one is ‘local’. Stuart has asked the recruiter for the ‘local’ job, if they would consider allowing him to telecommute and come in perhaps one day a week. (commuting to and from Raleigh. the next city over, is not fun! Rush hour is horrible, he’d spend at least 3 hours a day in his car…plus the wear and tear on the car, the extra pollution, and parking…ect…it all ads up.) They have until Tuesday to make a decision and an offer, he told the other company he would give them a decision on Wednesday. They both sound like excellent companies, and Stuart enjoyed his interview with both. So, either way, I think he’ll be happy.

He’s been out of work since Halloween. I knew it would be hard to find a job over the holidays, and it was. But he wasn’t idle. He sent out resumes…lot’s of resumes, had interviews, sold things on eBay, cleaned out his office, is preparing to sell the other car….he’s been a busy man…plus taking care of me wasn’t easy right after my surgery. I’m actually grateful he wasn’t working for a while there. Now that the holidays are over, he is in demand! I know it feels good. You can tell he’s feeling good about things.

That’s all for now. I feel like I could just talk and talk. I think I need to write more than I have been lately, shorter posts more often? That may be a good idea!

Dark Days…I’m having a rough time…and a request.

On December 28, 2011 By WendyIn Chronic Illness17 Comments

blue circles on black background that have been warped a bit. — Darkness and Disequilibrium Envelope Me

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.

thank you all.

I am so ‘effing STUPID!

On December 11, 2011 By WendyIn Chronic Illness19 Comments

A very shocked puppy in a picture with the caption..YOU Did What? — Picture by: http://www.theshamsband.com

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.

Endolymphatic Sac Surgery – Recovery Day 2 – 3

On December 4, 2011 By WendyIn Chronic Illness, Meniere's Disease11 Comments

Yesterday I woke with much more swelling and pain. Still no vertigo. But started getting pretty dizzy, after taking pain meds. There is such a fine line between taking enough so I can tolerate the pain, and taking too much to cause vertigo. Often the vertigo will come before the pain is under control. I really hate having to take pain medication. They make me feel drunk, and getting drunk when you have vertigo issues is not a good idea.

Had a great visit with a couple of friends last night. It was so good to see them, I haven’t seen them in a long time, but we keep up regularly through instant messaging and email. When they first got here, I was feeling pretty rough, I wasn’t sure I was going to be able to really enjoy the visit. But I knew these friends would understand.

When they first arrived I had a little bite to eat and took a pain pill, my first in about 9 hours. (I was really very hesitant after the way I was feeling that morning. I do not like the drunk feeling.) Luckily, the pain got better, and the visit was very nice! Plus, my friend brought me a bunch of clothes to try. (as I think I’ve mentioned before, I’ve gained a ton of weight this year, and I just don’t have anything to wear.) I haven’t been able to go through them yet, but I’m just thrilled I will have something to wear that doesn’t feel way too tight.

I had a rough time going to sleep, but seemed to sleep better once I finally drifted off.

Then I woke up this morning…what a difference. I started to lift my head to get up to go to the bathroom, and the world started moving. I put my head back down, things calmed, and I tried again…same results. I decided to wake up Stuart to have him help me to the bathroom. Again, I tried to get up, with his help this time, but the world went crazy!!! I laid back down, and things still were spinning out of control! Thankfully, it didn’t last long, but every time I tried to lift my head the same thing would happen. I don’t know how we managed it but we finally got me to the bathroom…ahh…relief. Getting back to the bed was rough, but once I was lying down again, things were much more stable.

The swelling around my ear was worse, but no fever, no redness, and it’s not hot to the touch. Thank goodness.

I decided to lay with my left ear down, to see if having the fluid drain some would help. I could hear it gurgle, and feel it, but very little came out. I slept for a while. Then I had to go to the bathroom again. Ugh. I tried and tried, and finally I decided it could wait. I feel asleep again. Stuart decided to call the ENT on call at Duke, just to make sure this swelling issue wasn’t something to be concerned about. She said, she thinks it’s just post-op swelling, she suggested ice at first, but we found out fast last time, ice on an open hole to the vestibular system is not a good idea. (Instant Vertigo!) She also suggested elevating my head. We slowly did this, first we got a thicker pillow, then added a pillow under my back (so my neck wouldn’t be at a severe angle), then added another pillow…now I’m at a slight incline, and the swelling has gone down quite a bit. I’m still having bouts of spinning, and sharp pains shooting through my head. Today has not been a great day.

This is so different from the first surgery. I didn’t have this severe swelling. (It has been swollen all around my ear, down my neck, sticking out about an inch.) My ear drained well the first time. I had a tube in my right ear, and it drained a lot. I also have a tube in the left ear, and I know it’s open because I sneezed yesterday and felt the rush of air blow through it, but very minimal drainage. I keep feeling fluid moving around in my ear, but only a very tiny amount is coming out. I did have some very red blood come out this morning, not a lot, but it’s not that clear gooey discharge I had the first time. I keep thinking, if my ear would just drain out, then I’d feel better.

The pain from the first surgery was much more intense after the feeling in my ear came back. The damage to the cartilage was intense. Question now is, if I’m this bad off now, what’s it going to be like when the feeling in the ear comes back?

I’ve started writing this post about mid-day yesterday, now it’s late Sunday night, and I’m just wrapping it up.

To sum things up, I feel horrible. Today has been very uncomfortable. I feel like I’m burning up with fever, but if you take my temperature I’m not. If I move my head, the world moves….sometimes much, much worse than other times.

(Please forgive me, but I did not reread this post for errors. I simply don’t feel well enough. No picture either? I really must not be feeling like myself.)

Tomorrow I should be posting for the next PFAM blog carnival hosted by Sharon over at Bed, Body and Beyond, submissions are due tomorrow by midnight, in whatever time zone you happen to be in! (Luckily, I wrote most of my entry before the surgery, so I just have to touch it up a bit.)

The topic? Why do we write? Please think about sending in your own submission. Sharon is great, and if you can’t make it by midnight tomorrow, drop her a line, she can probably give you a little more time. The carnival will go up on her blog on the 7th. So check out her call for submissions here: http://sharonwachsler.blogspot.com/2011/10/call-for-subs-pfam-blog-carnival.html

Surgery Over – Day 1 recovery

On December 2, 2011December 2, 2011 By WendyIn Chronic Illness14 Comments

Post surgery photo, Me lying in bed with large cup and bandage on my ear. — Getting ready to go home, after a long day!

Surgery went well. I had an Endolymphatic Sac Enhancement Surgery. After much searching, I found that different doctors do different surgeries and call it the same thing. Basically had a Mastoidectomy. (surgical removal of the mastoid process) with extra stuff. Dr. Kaylie removes more bone so the sac can decompress (on its own) and will have more room to expand. Leaving the endolymphatic sac and dura with no bone covering it. However, most of this is under your ear, so it’s pretty protected.

Hopefully, this surgery will stop 70% – 90% of the vertigo caused by this ear. I had this surgery on my right ear in April of 2010, it appeared to work. But since I’m bilateral, sometimes it was hard to tell if my vertigo attacks were caused by my right or left ear. Sometimes I could really tell, but since my hearing has diminished so much, and the tinnitus has gotten so much worse all the time, it makes it harder to distinguish.

I got home about 7:30pm. Had to be at the hospital at 11:30am, surgery was to begin at 2pm, but it was delayed until after 3pm because they had to give me a pregnancy test. I told them there was no way I was pregnant even explained that because of my hip issues, we haven’t had “intercourse” in a very long time. They asked again, how I could be sure I wasn’t pregnant. I told them, “let me put it this way, there has not been a penis in my body for months, because of my hip pain, we get creative, but we haven’t had intercourse. And I haven’t skipped my period.” (they considered giving me a test anyway, but I peed right before they took me back, and since I hadn’t drunk anything for about 14 hours, there wasn’t any to come out.) The nurses accepted this, but come to find out, if you are of child-bearing years you must have this test, hospital policy. So I squeezed out some urine for them….and we waited….and waited for the lab to do the test. So that delayed the surgery, luckily I was his last for the day so it didn’t put anyone behind.

When they decided I just had to have this test, Stuart joked, “Well, if you are giving birth to the messiah we want to make sure we don’t cause him to have birth defects.” Only, Stuart would come up with that one!

Before leaving the hospital they did have my pain under control, but I was hurting quite a bit shortly after we got home. I was sick to my stomach, (lot’s of anti-nausea medication), and pretty dizzy. I slept some, but I woke a lot because of the pain. I don’t think I took enough pain medication until about 4am. Finally, it started to work. I’d wake up in a few hours, and take half of a pain pill, this seems to have kept things under control. One thing that was odd, I had this horrible taste in my mouth I just couldn’t get rid of. Tasted like plastic and medicine. I swear I tasted that same taste as they were putting me under. I don’t remember this ever happening before. It was gross. I’m also having some crazy post nasal drip, and a cough. Of course, my throat is sore from the breathing tube, but it’s better today too.

That big cup they put on my ear, filled with gauze and stuff, I swear it causes more pain than the actual surgery. There was too much gauze and it pressed on my ear. When you have a hole drilled in your head about the size of a 50 cent piece, you don’t really want to feel something pressing on it. Thankfully, we got to take it off today, I removed all the stuff from inside, ewww, and just put a little packing back in, now it feels better, and I can sleep with out the worry of rolling over on that ear. They said I could just take it off, but the ear will drain for some time.

I have a tube in that ear, so the drainage comes out the ear a lot. This is actually an advantage. My Eustachian tube is very sore, so I know it’s handling a lot of drainage too. If I didn’t have the tube I think I’d have a much harder time with vertigo and pain.

My main nurse during pre-op, Janice, was amazing. She was so caring, compassionate, and professional all at the same time. She looked pained to hear what I had been going through. I told her one of my mottos, “Life isn’t what I expected, so I’m just changing my expectations”. I didn’t say this to be profound our anything, I said it to let her know, I’m OK with things. Yeah, it’s hard, not what I expected, but I’ll make the most of what I have. She was really stuck by this. She said everyone could learn from that, so many people get caught up in the what if’s and can’t get past it to see what they still can be. Right before I went back, she patted me on the arm, wished me the best, and said that she was going to remember to change her expectations as things change.

I was so humbled, and touched.

They had a hard time getting in an IV, one nurse tried, and even though she gave me lidocaine, it really hurt and it wouldn’t go all the way in. Janice came in and took over, she had a hard time finding a vein, I remember telling her, I wished I could help. She told me I was such a good patient. She soon found a vein, and I didn’t even feel her stick me! Amazing. (about IV’s, I had another one in my other arm when I work from the surgery…wonder why? I’m very glad I was out for that one, it was inside my wrist, a very painful place to get an IV.)

Everyone was very nice to me, and very professional, but Janice was exceptional.

Now, I’m getting tired, and a bit nauseous. I’m thinking all this drainage, and post nasal drip, is making me sick to my stomach.

think I will take a nap.

For now, all is well…I may be posting a lot during my recovery. I want to keep up with all my symptoms, so I may get a bit boring. I thought of keeping a written journal of it, or on my calendar, but I know I’m much more likely to come here, and talk.

Thank you all for so much support! You cannot imagine how much it means to me.

Suicide because of Tinnitus

On November 26, 2011November 27, 2011 By WendyIn Chronic Illness8 Comments

A friend sent me this story, he has Meniere’s too, it’s very sad, but shows just how severe Tinnitus can be.

Rock Fan Kills Himself After Concert Left Him With Tinnitus

Published November 18, 2011

A British rock music fan stabbed himself to death after a night out watching U.S. band Them Crooked Vultures left him with severe tinnitus, a coroner’s investigation reported.

Robert McIndoe, 52, was unable to sleep for three months after seeing the band – made up of former band members from Led Zeppelin, Foo Fighters and Queens of the Stone Age – at the Brixton Academy, south London.

His psychiatrist, Dr. Helen Stinson, said, “He accepted death as a side-effect of stopping the noise,” the Daily Mirror reported Friday.

The inquest heard he tried to commit suicide by taking an overdose at his home in south London in the same month that he fatally stabbed himself.

McIndoe’s wife Shirley said, “He just wanted not to be suffering.”

Tinnitus is characterized by a constant ringing in the ears, with the noise coming from inside the body rather than an outside source.

Woman with headphones listening loud to music, looking like in pain — image from http://www.dreamstime.com (free stock photos)

I know I’ve had tinnitus so severe that it would have driven me crazy if it had lasted for long periods of time. Luckily, it usually only last for a day, perhaps two.

I feel so bad for this man. It must have been so traumatic to have this hit him to this degree all of a sudden. My tinnitus is usually a low roar, and has only recently raised to the point that I just can’t stand it for short periods of time.

I know so many people who went (or go) to very loud concerts, or shot guns, ect…. with no ear protection. After the first concert I went to I would always wear ear plugs. I could still hear the music fine, but I didn’t have the ringing in my ears for days, ect. Yes, I have tinnitus, because of Meniere’s, not because I didn’t take precautions when I was around loud noises. People, especially young people, need to understand how they can permanently damage their hearing by loud music…ect.

Be sure that your friends and children know how easy it is to damage their hearing.

May none of us ever have tinnitus so bad we would consider something like this.

Picnic with Ants

Tag: tinnitus

Day 23

22 days…