I think I’ll just make a list of things that have been going on, then I’ll expand on them later….with some pictures.
First, the day after I wrote my last post be got a Foster Puppy. (that’s why I promised the next post would be happier.) For 2 weeks, we have the love of a 5 month old lab/Shepherd mix…this is a big puppy. But he was adorable, and we loved spending the time with him, fortunately Max (our cat) did not share our enthusiasm. I’ll write more about that later.
Then I had a migraine that lasted for 5 days without letting up, my meds would take the edge off a little, but not much. I spent those 5 days in our bedroom with blankets on the windows, and the doors closed. Most of the time I also had my hearing devices off. The light and sound was so unbearable. I really hate have hormone headaches. And this month was horrible. The cramps, the ….well you know what happens during that time of the month, but I will say, this was one of the heaviest periods I’ve ever had. I’ve heard that some women right before they start menopause they have worse periods. But I really don’t know about that. I need to look up much more about menopause.
Hearing with my CI is getting better. Stuart and I went to a restaurant that I can never hear in, and I heard the waitress, I ordered for myself! I carried on a conversation! This are still a bit distorted, but I’m beginning to tell male voices from female. Some things sound as they should. More on this later.
Tonight my hubby made homemade chicken soup for me, can you guess why? That’s right, I woke up in the middle of the night last night with a cold. I can’t remember the last time I’ve sneezed so much, and where does all this stuff that’s coming out of my nose come from? Ick! (btw, that’s not a serious question)
I probably have more to tell, but my head is hurting too much now. And I should try to get some rest….and some tea…oh yes, some tea will make it better.
The chicken soup was AWESOME! if you’d like the recipe you can find it here: http://wendycooks.wordpress.com/2012/04/15/the-best-chicken-soup-ive-ever-eaten/
Stuart did change one thing. We just made a huge pot of Chicken Stock, much richer than the broth the recipe makes, so he used that for the liquid. Sure is funny how chicken soup can make a cold sufferer feel so much better.
It has been a very hard week. I won’t go into details as it concerns people in my family, and I won’t talk about my family on my blog again. I’ve been contemplating all week simply closing my blog and disappearing, or making it private. But that’s stress talking, I’ve found so much support here and I want to think I’ve given a lot of support and information here too. Plus I need a place to go and just get it out. Even when I can’t talk about all of it. Let’s just say, it’s settled for now….maybe.
Photo by Vincent Morrison – Manipulated by Wendy Holcombe If photos could show feelings…
On the 15th, I got hit with a huge stessor! I was under extreme stress and confusion for hours. Finally, things were calming down. I was relaxing in bed, tying to breathe in the ill feelings I felt towards me, and breathe out happiness and goodness to all. I decided to have a little pineapple Greek yogurt, with a banana and nuts for desert. It is delicious. Well, what I got to eat of it. Right when Stuart brought me my decadence, I had that Wonky feeling in my head…so I took my pills and hoped it was just a blip on the radar. (Yes I know, how could I think of eating if I was feeling Wonky, but I’ve been having a lot of Wonky spells that just turn into nothing lately.) Unfortunately, before I was even finished with my treat the world was in full spin! This was one of the longest attacks I’ve ever had….and one of the strangest. It was Meniere’s, not vertigo caused by a migraine. I went through all the stages…and all the grossness. (some how while throwing up I bashed my elbow on something, and it has had a knot on it since then. It’s getting better, but I was afraid I had broken it the next day.) Again, all the throwing up and losing all bodily functions. Not being able to lift my head, except to put it in a bucket. (I even threw up on our brand new carpet….not much, thank goodness, but Yuck!)
So the vertigo kept changing speeds, it would be wild, so fast I couldn’t recognize the things spinning by, then it would slow down to the point I thought it was going to stop any second….I even dozed off a few times, just to be jerked awake by vicious spinning again! This went on for over 16 hours. Luckily I didn’t throw up the whole time, I did keep heaving though. Even before I threw up the first time, I would have the worst muscle spasms and just heave, like I had dry heaves, but nothing had started yet. This often happens to me when I have an attack, at he beginning at least, I can’t figure out why. Why does it have to hurt so bad??
Even after the spinning stopped for the next day I kept feeling like they would start back up, I couldn’t walk straight. It was a very rough 2 days.
On Friday I had an appointment with my headache pain specialist (neurologist). I was supposed to get Botox shots for my migraines. Many people have had good results from this procedure. I was a bit nervous, they do 31 shots in your head and neck/shoulder area. Alas, I did not get it done. Once again our insurance did not send a pre-approval, they didn’t deny it, but they didn’t approve it either. Just like with the Cochlear Implant. What a pain in the butt that was. Luckily, they did pay for most of it. They didn’t cover a procedure that cost about $500, testing the device after they hooked it up to me to make sure everything worked right. Can you believe? What if they hadn’t tested it, and later found out part of it wasn’t working? I’d have to go through another surgery to replace it. How bizarre. Stuart called the insurance company on Monday, I have been approved for the procedure, it just seems no one knew it. So now I have to get another appointment with this doctor…..hope it’s soon.
Sunday I had another scare. but not with vertigo. Really I wasn’t scared, it’s happened before, and I’ve been checked out, still it’s uncomfortable and yeah, it’s a bit scary. I had heart palpitations. I figured out why, but it lasted a long time. I wasn’t as careful Sunday about what I ate or drank. I do not drink caffeine very often, and if I do, it’s just a little bit. I also don’t eat much sugar. Well…I wasn’t so bright on Sunday. We were out and I had Mandarin Orange Green Tea, not thinking that Green Tea has caffeine. That would have been fine, but later in the day we were at a store and I started feeling funny, and very thirsty, we couldn’t find anything that didn’t have either caffeine or sugar. I decided to take the caffeine since I wasn’t sure if the sugared drinks had fructose. I only drank about half of the soda. After dinner I decided to have some ice cream we bought, it is Fat Free, and I was thinking Sugar Free too. Not bright. I only had about half a cup, but it was enough. I started feeling strange. I thought my blood sugar had dropped, so I ate some protein. But it didn’t work. I was sitting on the couch watching TV with my hubby and I felt like my heart was going to beat out of my chest. The doctor told me to massage one side of my neck, and it should help, she also said to put something cold on my wrist. Well I did both, for a long time. This lasted longer than I was comfortable with. Finally, things slowed down….and all was alright.
I hate how much I have to watch everything I put in my mouth. It would be difficult enough if that was all I had to deal with, but dealing with all my food issues and my other health issues is hard! I’m dealing with it, and I’m lucky I can eat as much as I can…right? I just need to be more diligent.
Getting Prepped for Surgery. (photo by Stuart Holcombe)My Surgeon’s Signature. Marking which ear they will be operating on. (photo by Stuart Holcombe)I’m a FALL RISK! When you have Meniere’s as a diagnosis, you are pretty much so labeled a FALL RISK. Funny, I don’t really see where they do anything different. I did get an escort to the bathroom, but if I had fallen, she wouldn’t have been able to hold me up! I think I’ll keep the bracelet and just keep putting it on when I go to Duke, no sense in wasting them. : ) (photo by Stuart Holcombe)At home, tucked in my bed with Monkey after surgery. Sorry photo is a bit dark, but I didn’t have time to adjust it. photo by, Stuart HolcombeTaken 7/23/2012 – The oily part and yellow part is the stuff they put on the protect the wound until it has healed enough….I get to wash my hair on Thursday. I do not have any stitches to take out, all will dissolve. (photo by Stuart Holcombe)Another view of incision. It was hard to get my hair in this position to show how much was shaved. It is very easily covered up. photo by Stuart Holcombe
Sorry I haven’t posted, and unfortunately this post won’t have photos, I promise they will be coming soon.
My surgeon told Stuart that my surgery went “perfect”. Yay!
Of course, I’m a weird patient….I had a reaction to the antibiotic. Not a severe reaction, but I looked like a clown. I had very red cheeks. Nothing serious, and it faded the next day, I didn’t even have to change my antibiotic, but we had to keep a watch out for a little while.
I also had a reaction to the adhesive they used to attach the heart monitor to me. I looked like I had huge hickies from an octopus hugging me. But again, nothing serious.
The pain isn’t bad. But it is there. Yesterday was worse, probably because I hate taking pain medication and was tired for feeling drunk. I am swollen, but I think it’s better than it was yesterday. I’m very tired, and I’m having some killer migraines. That’s why I haven’t posted before now. The migraines made it way too uncomfortable for me to look at the computer.
So….everything is fine! I’m doing well!
My Cochlear Implant will be activated on the 31st.
I’ll get photos up as soon as I get them off of my phone! They look much like the photos from the endolymphatic sac surgery…same smiley cup and everything. Wait until you see how much hair is gone! (really, not much at all, you can barely tell!)
I’m sorry to my followers, my friends, that I have not been around much. I am a bit overwhelmed by so much that has been going on that I haven’t told you about, and I’ve been sucked into a depressive state. I keep trying to pull out of it, I even have a new medication, but I’m still just blah. I wake up in the morning, and often feel awful for the first hour or two, it takes me a while to feel like a real person, then when I actually feel alright, I think what reason do I have to get out of bed?
I don’t find pleasure in the things I used to be so passionate about, like art, cooking, blogging….ect. I do still find pleasure in reading, perhaps it is an escape? I also still find pleasure with my husband, just being next to him makes me feel better.
I will be seeing my psych. tomorrow, I’ll discuss this with him, and we’ll see if I should increase the antidepressant I’m on, or try something else. I’m sure he can help pull me out of this.
If you have been reading my blog for a while, you know that I’m normally very positive. This turn of emotions has hit me like a wall, I don’t feel like myself. I need to get my positive outlook back.
The ironic thing about this, I’m actually much better. I have the weird feelings when I first wake up, but I think that’s because I’ve been horizontal for so long that my cerebrospinal fluid raises a bit, and I have to sit up for a while, and take my medicine before I feel better.
I’m still having migraines, but they aren’t as intense. I’m still having Migraine Associated Vertigo (MAV), but not as often, and when I do it doesn’t last as long. Maybe I’m just getting the medication in faster, all I know is it’s better. I’m still having chronic migraines though, yes they are better, but they still knock me out of commission for a while, so my doctor is starting a new treatment plan. We want to get it where I’m having much fewer migraines, not just less intense.
No Meniere’s vertigo!
My surgery has FINALLY been scheduled! July 19th, I will receive my bionic ear! (my implant is from Advanced Bionics…so I can literally say I will have a bionic ear!) Two weeks after surgery they will turn on the cochlear implant. (I wrote a post telling all about the processors I chose, but that’s the one WordPress deleted half of, so I need to finish it again…I will try to do that soon, so you can see what will be hooked to the side of my head. I’m sure you are all eager to see that! : ) Just wait until you see it actually on my head!
Other things that have been happening: We got new carpet. We replaced our worn out couch. We had our mattress replaced under warranty…it wouldn’t bounce back. So the house is full of chemical smells, and I’m so sick! I keep trying to stay in rooms with less chemical smells, but I’m still coughing so much my throat is sore, my head hurts, I’m so tired all the time….ect. I’ll be so happy when I can breathe in my own house again!
Tell me is it normal to feel down when you start feeling better? Yes, I’m feeling better but not to the point that I can do everything I want. Since I feel better, I’ve begun to resent that I can’t drive, I can’t have that independence. I hate that Stuart has to be with me for me to leave the house. I know with the uncertainty of vertigo it’s even dangerous for me to walk around the block by my self. I resent that I have to be careful of all the food that I eat. We took a little trip this weekend, and it was so very hard to find food that I could eat. I felt horrible, every time we wanted to eat it was such an ordeal. It’s not so bad locally, we know places that are safe, but I didn’t think about not being able to find safe food on the road. We tried so hard to make sure everything I ate was safe for me, but still I got sick. On the way home we had to stop numerous times so I could run to the bathroom. I was so embarrassed to have that happen in a public restroom. eww.
I used to find it a challenge and a pleasure to cook even with my restrictions. I thought it was interesting to figure out how to change a recipe so I could eat it. Now I resent that I can’t eat some things. That I can’t cook whatever I want. I don’t like this feeling.
Oh, I almost forgot, I had a birthday. July 2nd! My husband is a dear man, he celebrated my birthday for 4 days, and I’m getting my main present today! So, still celebrating… he’s done something sweet for me every day since Friday! He really made up for the one time he forgot my birthday! haha Funny thing, I thought I was turning 50 this year. Stuart and I were walking along one day last month and mentioned my birthday, I said that this one was a big one, he asked why 49 was big for me, I said, “No, I’ll be 50!” He looked at me, and said “No Wendy you will just be 49”. I was sure I was going to be 50! He said, “What year is it?” I said, 2012….Ooooh! I guess I’ll be 50 next year.” How silly was that? Here I’d been telling people for months that I was turning 50 this year! hahaha
Well, I think that’s all I can purge out of myself at the moment.
I will try my best to blog more often, I really want to become passionate about it again. I’ve missed my friends.
I miss blogging, I miss my blogging friends….but it’s hard to get started again.
Now I think of things that have happened since I’ve been away that you don’t know about, and things that are going to happen….so much to talk about I’m overwhelmed. Eh….maybe not so much. My life really isn’t that exciting.
I went through a bout of depression, that knocked me off my feet. By that I mean, I didn’t want to get out of bed. I’d wake up and think, what reason to I have to get up? I couldn’t think of a reason, and the sleeping side effect was not helping!
I know part of the depression started when Sandy died. But the biggest problem is a bit strange….at least to me, my therapist says it’s normal. I’ve been feeling better. The Meniere’s isn’t bothering much at all since the surgery in December. The Intracranial Hypertension (High CSF), is minor and under control with medication. My migraines are not as painful, but they are causing vertigo often! So much so that there is no way I’ll ever be able to drive again. The Migraine Associated Vertigo (MAV) gives me NO warning. I wouldn’t even be able to pull over to the side of the road, the world just goes crazy immediately. I can’t even walk around the block by myself, or do things in the yard. I tried one day, and it did not end up good. So I’m stuck in our house, unless I have someone with me (meaning Stuart). I know there is plenty I could do in the house, but when you can’t do things you want….well everything else kind of falls flat.
But I’m better. Really. It’s kind of funny. I was watching Sponge Bob Square Pants and he was singing, “I’ve got an attitude of gratitude….” And I realized I used to every day think about things I’m grateful for, and I hadn’t been lately. So I started thinking about it, and I felt better. Also we’ve been talking about fostering a dog, or perhaps adopting. Sandy was a rescue dog, and we’ve been thinking that taking care of another dog who needs rescuing would honor her. This has made me feel better about things, I really miss Sandy, and do NOT want to replace her, but the thought of honoring her by helping another dog….that makes me feel better inside.
Now that the sleeping has gotten back to normal, I’m feeling better about other things too.
We went to see the audiologist on Wednesday. I picked out all the options for the Cochlear Implant (CI) that I want! We expected to have heard from the insurance by now, but it’s seems to be a big old pain in the butt. And all I can do is, wait patiently. I’m not the most patient person!
Now, I’m started… let’s see if I can’t make a habit of this!
There is so much I wanted to accomplish during my little hiatus. Paying more attention to the spiritual side of me, painting, working on some things in the house….
What have I been doing? Sleeping. A lot.
First I’ve been having much more Migraine Associated Vertigo (MAV), one day I had 2 attacks in one day! That’s never happened before. On those days I understand why I’m so whipped out, but there are many days where nothing has happened, but I feel like I can’t keep my eyes open. I’m wondering if one of my medications is bothering me, but nothing has really changed recently. I was taken off one drug, but nothing was added when this started.
On the 12th I had the Pneumovax -23 vaccine. It’s a vaccine for 23 different strains of pneumonia. Including one that causes meningitis. This vaccine is required for anyone who is getting a cochlear implant.
Unfortunately, I’m one of the people who had side effects to the vaccine. Including extreme soreness of the injection site, and my whole arm, fever, swelling of injection site, redness of injection site, diarrhea, and extreme fatigue. Normally, all of the side effects subside within about 5 days, but some people feel some of them (especially the fatigue and malaise for 14 days or more.) I think I’m in the more category.
This has been an experience. Most of the symptoms did disappear after the first few days. The injection site is still a little pink and warm to the touch, but I can lift my arm, not fever, the extremely gross diarrhea didn’t last long, I’m grateful to say. (too much information following) – One day I was having loose stools, nothing serious, but I felt so exhausted, so I decided to take a nap. While I was asleep the diarrhea struck, it didn’t even wake me up! What a mess. That was a scary thing indeed, for a long time I was afraid to go to sleep, but I was so tired. We decided to put a pad under me on the bed so I knew if something happened I wouldn’t ruin the bed, then I was finally able to go to sleep. But I had 3 times where I had to RUSH to the bathroom before sleep finally came…and I’m happy to say the extreme diarrhea stopped.
Still I’m tired. It’s been 19 days. I don’t think this is just the vaccination. I think it’s a combination of MAV (yes I’m having it almost daily, luckily this vertigo isn’t as intense as my vertigo from the Meniere’s. It is easier to get through.), some medication, and probably just some of the stress from everything. Plus, maybe some of the medication.
I am putting together a post about my journey on my way to getting a Cochlear Implant (CI), mostly it’s a lot of waiting. Next week I tell them which processor I’ve chosen, and I find out where we are with the insurance. I’m really hoping this will happen soon. I’d like to have it turned on by my birthday…what a present that would be!
In the next post, I’ll explain more about what is going to happen, which processor I’ve chose, and a bit more about the process I had to go through to get qualified for the CI.
Until then, I think I’ll take a nap. After all I only slept 12 hours last night. : )
On May 1st, I saw the audiologist and ear doctor and as my ear doctor said…..”Your hearing sucks!”
On my hearing tests the word recognition in my left ear was again 0%, and the right ear was 28%. So it’s pretty obvious I don’t understand a lot of what’s being said.
On Friday, May 4th, I had the official hearing test to determine if I am a candidate for a Cochlear Implant. Yes! I am!!
Advanced Bionics – Harmony- Cochlear Implant.
Next step. Insurance authorization. It can take 4-6 weeks. During this time I need to decide which device I want (there are 3 available, and each have some pros and cons…so a lot of reading and research). Also, during this time I need to think of any questions I may have, and be prepared to ask them all. However, I understand the surgery, how the cochlear implant works, how I’ll be hearing differently, and most everything I can think of right now. I’m sure questions will arise though.
After the insurance approves everything, we just have to schedule the surgery…and it’s go.
About 2 weeks after surgery they will turn the device on. I’ve been warned I may not hear much at first. As time goes on my doctor thinks I will hear better and better. If after a few months I feel I’m hearing better out of my left ear than my right, it is a VERY big possibility that by the end of this year I may be getting a second CI. They say if you need 2 it’s better to get them close together if possible.
I was told that I am in a good place about all of this, I’ve only recently lost my hearing and people who get CI’s who recently lost their hearing normally do much better.
Right now, I’m excited at the possibility of hearing again…but cautious. I know hearing through a CI is not the same as hearing normally. I understand all surgery carries some risk. So naturally I’m cautious.
But how would you feel if you were told that in just a couple of months you could go from 0% word recognition, to hearing again. Yes, I know I may not understand everything in the beginning…heck, I may not understand anything….but it will come. I will be able to hear again.
**In other news about me…… The migraines are so much better!!! I had another round of steroids, and hopefully they have stopped the cycle. (There is some doubt right now that I have Intracranical Hypertension. If I do, it has not escalated, and the medication that should help didn’t help much. The migraine treatments have helped much more. My last lumbar puncture did show high CSF, but not very high. Actually, it was pretty low in comparison to most people who have IH…..so we don’t have to worry about a shunt any time soon, hopefully, never!)
Today’s Prompt: Word Cloud. Make a word cloud or tree with a list of words that come to mind when you think aboutyour blog, health, or interests. Use a thesaurus to make the branches of your “tree” extend further. http://www.wordle.net/
I did a little bit of a different take on this prompt. I hope you like it.
Today I’m using a prompt from the Extra prompts they sent us.
Daily Schedule. Write a list of your daily routine from the moment you wake up until the moment you go to bed. Be honest!
photo courtesy of istockphoto.com
Honestly, I don’t have a set schedule for any day. My days are ruled by my conditions. If I’m having a day filled with vertigo, or migraines I spend the day in bed. If my hearing is way down, I spend the day as alone as possible. I often have doctor’s appointments. My days change from one to the next, a lot. If I’m feeling a bit better, I do more….
Here’s a recent weekend day.
After a restless nights sleep I awake around 9am with a blinding headache. I’m seeing double, with shadow spots on the walls. I take the medication that should lower my CSF pressure(cerebrospinal fluid pressure), and wait to see if it will relieve the pain. My husband brings me some breakfast in bed, along with the rest of my morning medications. The headache has not eased. Finally, I decide I should take some migraine and pain medication also. I try to sleep some more, this time sitting up, hoping my CSF pressure will lessen.
Noon – The headache is still there but much better, I’m hungry, but not sure I’m steady enough to go down the stairs. My husband brings me lunch. I decide to check my email, and do some things on the computer. Focusing up close is much easier than focusing at a distance.
2pm – Time for my next CSF pressure pill. I’m feeling much better, and steadier. We decide to take advantage of this time feeling a bit better. I want to go to the local Co-Op to pick up vegetables and meat for dinners for the week. We had a good trip to the store, and a nice ride home.
4pm – Home. I’m tired just from the little bit of shopping we did, and the ride. I help put the groceries away, and start to plan dinner. I turn and feel the world move. Oh no.
5pm – 9:30pm I have vertigo. This vertigo is caused by the Intracranial Hypertension, not the Meniere’s. I can tell because if I keep my head in one position and concentrate on something still close to me I will stop spinning, but if I move, the vertigo returns. If I was having a vertigo attack from Meniere’s I would not be able to stop it, no matter what.
9:30pm I am completely exhausted from the vertigo attack. Finally, I can move. I eat a little something, and head to bed….with a lot of help from my husband. Take my nightly medications, and try to sleep.
This is a somewhat normal day. I don’t always have vertigo. I do normally wake up with a blinding headache that often takes hours to get under control. And we always try to take advantage of any time that I’m feeling well enough to do something. (I know going grocery shopping doesn’t sound exciting to most, but I love to cook, so shopping for food is exciting to me.)
Picnic with Ants 