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!
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.
Yes, after writing such a positive post about all the things I’ve been doing lately, I’ve spent the last two days in bed.
Oh my aching ear! image courtesy of dreamtime.com
I have an ear infections, AGAIN! At least I’m pretty darn sure I do. The left ear, the one that I recently had surgery on, started draining more (it has been draining since surgery, this is normal, but it was clear and getting to be less and less. It drains out of my ear because I have a tube in that ear.) It started hurting, and the consistency of the stuff draining out looks like puss. I’ve been running a low-grade fever, mostly at night. And I feel very icky!! Ugh! So the world is very off-balance.
Please, don’t think ill of me, but I have about half a bottle of the Cipro Ear Drops my doc gave me last time, so I am treating myself. (I would normally never do this, but I’ve had so many ear infections, I pretty much know that’s what it is. I know…I’m recovering from surgery and should get it checked, if it’s not better Dr. Kaylie will see it on the 30th.) I just didn’t want to deal with making an appointment, and going to Duke, ect ….ect….just days before I have to go in for blood tests, an MRI, and visit Dr. Kaylie. Also, I didn’t want to suffer all weekend when I could get the medicine started.
Yesterday and today have been a bit rough. I feel like a human gyroscope. My head feels like my brain is lose and moving around. I was sitting on the toilet last night and the tile on the floor wouldn’t keep still. They kept going round and round in a clockwise spin. Ahhhh! I hate this, but at least I’m not throwing up for hours on end.
The weather has also changed, so that is a contributing factor and I’m fighting migraines. To top it all off, I’m just about to start my period. That always throws a wrench in things. Not a happy girl right now, but I know it will get better, so hope is always on the horizon.
Does anyone else have a really hard time going to sleep because of spinning? Even when I’m not feeling off, when I close my eyes and try to go to sleep I will start to feel like I’m moving. I jerk, and have to calm myself. Over an over…I’m actually afraid to try to sleep now. Many nights, I don’t get to sleep until absolute exhaustion overcomes me. Normally between 3am and 6am. Last night was a 6am day.
However, another obstacle to my sleep is pain. Headaches, muscle aches, hips…ect. It’s all worse now that the weather is colder and it’s raining. But I can’t live on pain pills. What to do, what to do? We know sleep aids just don’t work for me….I’d really like a good nights sleep, preferably on a regular basis. Exercise would probably help, but that’s just not possible right now.
Whew…a lot of whining today huh?
Don’t worry, this is just a little bump in the road, one step at a time, one day at a time….the sun is right over the horizon…I can feel it…and know I’ll be back to my normal positive self in no time.
**Please note, I have been reading all my friend’s blog entries, thanks to my new phone, I can read your blog entries anywhere. I really need to acknowledge a couple of posts here, but I haven’t been feeling up to par, and simply haven’t been on the computer as much. I’ll try to catch up on everything soon. But I may miss commenting, please don’t be offended. I’m still reading, and thinking of each and every one of you.
As I’ve mentioned before, I haven’t had the greatest sleep schedule, or sleep at all really. So my doctor put me on Rozerem. Rozerem is a sleep aid, but it isn’t addictive, and can take up to a week for full effects. 4% of the patients had increased dizziness compared to 3% who took the placebo. So a good choice for me, right? Umm, not so much. It was prescribed before my surgery and each time I took it I woke up with vertigo.
Rozerem Ad
Last night I decided to give it a try again, thinking possibly it would be different now since things have calmed down so much.
Yes, I should have known better. I woke up, not with vertigo exactly, but the world is not being still! I’m using the walker to get to the bathroom and every time I move my head to either side I feel like I’m going to barf. I have acid reflux so bad, it hurts all the way down my esophagus and into my stomach. Neither my prescription acid medication nor Maalox is working. And the diarrhea is back. (yes I had one day of normality, yesterday, I’ve not eaten any vegetables, except a pickle and a piece of lettuce on my burger yesterday, for 3 days. The burgers I made, so I know they were safe. I think most of the diarrhea today is because of the spinny head. It does put me in the fight or flight mode, constantly expecting a full-blown attack.
I got the book Food Intolerance Management Plan by Sue Shepherd yesterday. It has the most up to date information about Fructose Malabsorption and other food intolerances. Sue Shepherd is considered THE expert in Fructose Malabsorption (FructMal). So I looked at the book, from cover to cover yesterday. I just knew I’d find something I’ve been doing wrong. Nope. I’ve been eating all safe foods. This book gives a lot more variety than I’ve been eating, and says I can eat much larger servings than I have been. So why is it that every time I eat a vegetable, I get sick? Ugh! I’m working on it. That’s my big goal this year, find out how to stop this GI trouble! Then I’ll think about losing weight.
So enough about my bad day. (we all know, it’s just a day, one day at a time right?)
Did you see the last part…Wikipedia will join the Blackout!!! (Don’t forget the Blackout is the 18th, so you may be on line and not be able to find many of your favorite spots.)
If Google would join, that would make all the difference. Could you imagine a day without Google? Even just shutting down their search engine would make a huge statement. But alas, I doubt they will.
However, it also looks like WordPress has joined the strike, so my blog may not show up anyway. Neither would any other blog on WordPress.
On a different soap box….Don’t forget to PLEASE sign the petition about Headache Disorders – The Petition is Here.
Now, I’m going to take a nap, and hope my head is less wonky when I get up!
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.
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.
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.
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!
A Butterfly for Stuart - by W. Holcombe (all rights reserved)
My dear, dear friends, thank you so much for the very kind words that you said about me after my last post.
I kept reading these comments, thinking…”Yeah, I like that about me too!: Some I hadn’t thought of, but realized after reading them, that yes, that is a part of me. It made me realize, I can write the list as 20 things I like about Me. I just needed a little push to remember some of those things. Thank you! And I guess, after this past two years, I needed to hear that there were still some things about me that others think are likable. Thank You Again!
I sat down and had a talk with myself. It went something like this….”OK Wendy, you’ve been telling people you will just change your expectations of life, since things aren’t what you expected. Now, You didn’t mean you’d expect things to be bad…no Mam! You simply think things are different, and you can work with that. You are strong, and you can find the light that will lead you out of this tunnel! So pick yourself up, dust yourself off, and get moving again! Remember, success is getting up once more often than you fall down.” (yes, when I talk to myself I have a VERY Southern accent, it comes out any time I get angy. I am originally from Charleston, SC after all.)
So I made a plan. I have been so sick for so long, I haven’t been taking the best care of myself. Partially because I couldn’t for a while, but some days because, I just didn’t have the drive. I thought, what’s the use, I can’t do anything. Why get dressed? Why shower? Why do much of anything? Even on the days when I could (Physically)….sometimes I just couldn’t (Emotionally). After my little talk with myself, I decided, it doesn’t matter if I have nowhere to go, if I can get out of bed Physically, I will take care of myself more. I will get dressed every day, even if I don’t step foot outside. If at all possible, I will at least go downstairs to work on the computer and do my artwork. I will try…very, very hard to get out of the house more often, even if it’s just to walk to the mailbox and back. And last, but certainly not least, I will try my best to be around people more often.
Pretty big change from my last post huh? Sometimes I think I need to hit that dark place, to make me realize I need to pull myself out of it. This was a slow decent to a place I was scared of, and I didn’t like myself one little bit. A friend of mine once told me that he admired how I could pull myself out of times like these. It isn’t easy. (plus I’ve been through a LOT of therapy!) I have bipolar disorder, I can tell when depression is enveloping me, just as I can tell when I’m starting to fly in with the mania. My psychiatrist once told me that I was more in tuned with myself than any patient he had, I’m grateful for that. If I feel I’m swinging one way or the other, first I tell myself…this will pass! I will NOT feel like this forever. Then I try some exercises my therapist has helped me with, or I meditate, or I read something I find helps…I try to help myself before things get too one-sided. If I can’t then I get on the phone and call my psych! That’s what he’s there for. Luckily, I didn’t have to do that this time. My pep talk to myself, the affirmations I got from my friends here, and reading some Buddhist teachings, helped to pull me out of it. (and I have an appointment with my psychiatrist next week, so I knew if that didn’t work, he would be there for me.)
One day, I’ll write more about being bipolar. I’m lucky I am stable, have been for years now. When I feel one emotion going too extreme, I know what to do. I recognize it and can get help before I get to the breaking point. However, I had a lot of struggles to get here, and there are many people out there who aren’t as lucky as I am. I think the one factor that made the biggest difference in my life with this disease, is finding the right psychiatrist and therapist. I’ve seen a few, but they weren’t a good fit with me. It’s very hard to understand that when you are ill, but I finally realized if I’m not comfortable with the person treating me, I shouldn’t stay with them. Now I don’t mean, my therapist said something I didn’t want to hear, so I left. I mean, our personalities didn’t mesh, I didn’t feel I could trust one of them….have you ever been with someone and they gave you this funny tummy feeling? Like something just isn’t right? That’s what I mean, that tells me that things aren’t going to work. Finally I got a good match, and that made all the difference.
So…I took my own advise today, and got up, took care of my personal needs, got dressed, put on make-up!, and then I rested! Whew, that was a work out!
Hubby needed to run some errands, so I decided to get out of the house. Today I had the least amount of disequilibrium I’ve had in a very long time! Mainly only when I bent over, or turned my head too fast. Luckily, I didn’t do that very often.
We went and dropped off some donations, and I bought a pair of shoes, and a purse at Goodwill for $5.00!! I love Thrift Stores!! We went to Michael’s to exchange a picture frame for the right size. Had lunch out. That’s always a challenge with my hearing, and food issues. So we went to a place that has one thing I know I can eat safely, I let Stuart order for me so I didn’t have to try to hear the person taking my order, and we sat where no one would be behind me, and a little away from as many people as we could. It made things much easier. I found if there is a lot of noise in a place I get dizzier. On top of the anxiety I’m feeling because I can’t hear, it really makes it hard…but I did it! We also dropped by the grocery store for a few things. A busy day. However, we took our time. I took rest breaks, and I don’t feel I over did it! We’ll find out tomorrow.
Once more I want to thank you all for being so kind, and helping me out by telling me things you like about me. Please know you are very special people. Look at how you reached out to help me! How you support me and others. Please know, that you are loved.
My this New Year bring all of us greater health, happiness, prosperity, and love! (and anything I may have left out that you are wishing for!)
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.
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.
Picnic with Ants 