Cochlear Implant #2…a short update

On October 9, 2013 By WendyIn Chronic Illness, Cochlear Implant15 Comments

I haven’t been on the computer much since my surgery. I simply do not feel well shortly after I get on, I get all hot and dizzy…so no computer for me. (please note, I didn’t read this after I wrote it, I am just too tired, please forgive any strangeness, grammatical errors, or anything that is just wrong.)

However, I did want to update all as to my recovery.

Incision the Day after surgery, — Day after surgery, Sorry it’s not cleaned up more, but I hubby just took this picture to show me, and then we forgot to take another one.

Had the Cochlear Implant surgery on the 25th. The incision looks great. It still hurts a bit, not terribly bad, but annoying (mostly it’s just itching now!). The tinnitus has been going Crazy!! As I mentioned in an earlier post prescription pain relievers have been making me itch, so I’ve had to try different things.

I tried Arnica Montana (most just call it Arnica) in the oral form. I’ve used the topical gel many times with much success, but I’ve never tried the tablets. Before surgery we checked to make sure it wouldn’t be adverse to my medications, but didn’t see where it said not to take it if you are allergic to ragweed. (guess what my number one allergen is? Ragweed!) So I took it for a day and my muscles seized up. I couldn’t even sit up without help. So no more Arnica for me. It took about 2 days for me to not hurt all over. Kind of ironic, I used it to help with the pain and ended up in more pain. But, hey, it took my mind off of my ear!

I am able to take an NSAID by injection. I can’t take them orally because they have caused me a lot of stomach troubles. So I have Toradol injections. Unfortunately, I can only have 2 a week. But they do help, a lot! I use this for my most intense migraines too. We decided to try 1/2 a shot to see if it helped, and it did! Yay! So I was able to have more shots just at a lower dose. This helped a lot, especially when I couldn’t sleep. But really, over all, I haven’t been in much pain, just uncomfortable with my glasses.

The vertigo started about 3 days ago. I don’t know what’s going on really, I’m sure it has to do with the fluid from swelling and it going down…or something. It’s not the normal Meniere’s vertigo. It’s often positional, so if I lie very still I don’t spin. I’ve also been having this strange sensation as if I’m having vertigo, but I’m visually spinning. I feel my body/head moving, but I’m not moving, nor do I see anything moving. It makes me just as sick as vertigo does. Strange huh? I’m still so grateful I was able to get Phenergan injections that hubby can give me. I think it has saved me many times.

I was supposed to be activated and get my processors on the 8th, but the vertigo would not let me. I thought I probably could have made it through the doctor’s visit, he is just checking the incision site, but going through the audiologist appointment would have had me on the floor! That is a LONG visit. Not only does she actually turn things on, she has to adjust things as I tell her how the beeps sound.(called MAPping for those with CI’s, or those who are just interested). Then I have to have a hearing test, not just a regular hearing test, but a very long and detailed test. I get so tired and worn out every time we do this I often have an attack that evening, so going there with me already feeling wonky in the head, would not have been wise.

Unfortunately, that means that I may have to wait until the first week of November. We/They are trying to work it out so I can get in sooner, but the way I’ve been feeling I wouldn’t say it will be too soon anyway. The office is looking to set up the appointment with my doctor on one day and then the audiologist on a different day instead of trying to do both in one day. This should be easier to schedule. Plus, it should also be easier on me. At Duke they normally try to schedule as much on the same day as possible because so many people come from far away to be seen. We often have to remind them we just live about 10 minutes from there.

So that’s my news for now. I’m tired a lot, sleeping a lot…..guess I’m healing. (oh who am I kidding, I was sleeping a lot before the surgery!) Catching up on some reading, and watching TV. The new season of Rupaul’s Drag Race just started! (actually, they are showing season 1 again, it’s a hoot!) If you asked me last year if I watched any reality shows I would have said no, but I love Rupaul’s show! after all……

“If you can’t love yourself how the hell are you going to love anyone else?…..can I get an Amen?” – Rupaul signs off each show with this quote!

Round and Round I go…where or when I’ll stop nobody knows…

On September 19, 2013 By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease6 Comments

I feel like I haven’t been here in ages, and I probably haven’t.

I have to make this short, but wanted to give a little explanation as to why I’ve disappeared…when I have so much to say! And give a tiny update.

On a Carousel at the NC State Fair – I’m on the left, Jenn in on the right, and Stuart is in the mirror. As you can tell, this photo was taken before I started having Meniere’s symptoms so often. Taken Fall of 2005….I think.

I’m having a LOT of VERTIGO! Luckily it’s not the severe- losing control of all bodily functions for hours -kind of vertigo. It is much slower, and less horrific. But it’s happening almost every day, often more than once a day. I’m getting to the point where I’m terrified my worst fear may be realized…..at some point it won’t stop.

I am so happy I am handling it so much better than I used to. I used to freak out even if it was a mini attack. These attacks are more than a mini (one that happens for just a few minutes), but not a full blown severe attack. Hard to explain, but I have a routine now that really helps. When it starts, I take my meds, I get ice and put it on my chest or wrap it around so it hits my back and chest (I always get very hot and if I can cool down fast it helps). {I keep these things close when I’m alone, when Stuart is home he helps, but I am always prepared.}Then I put something close I can focus on, usually a cup. I hold it with my hand…and close one eye, that seems to help a lot….I tell myself….actually I think it is important to say this out loud if you can.., “This is not real, you know your hand is not really moving, so nothing is moving, This is not real…this is not real….” I also try to control my breathing. Normally, I start breathing short and fast, now I try to take deeper breaths and tell myself to calm…remember, it’s not real! At times I chant, Stuart will chant with me…it’s very soothing, even when my body is telling me that nothing is as it should be. I’m also very lucky that I now have Phenergan shots at home. My otologist (for those who may not know, an ENT is an otolaryngologist – study of Ears, Nose, and Throat….my doctor just specializes in Ears…the oto- part.) couldn’t give me a prescription for injections, but my Migraine doctor can because she is a pain specialist. The Phenergan shots help stop the vomiting, and that’s more than all right with me!!! (I do need them when I have migraines too) I do still get nauseous but I’m pretty sure that’s mostly because the acid in my tummy gets all churned up due to the stress.

OK…so that’s why I haven’t been around.

Now….why I might not be around…but I might….

My Cochlear Implant surgery for the right ear is next Wednesday, the 25th! I’m not sure how recovery will go, we know that I can have the same surgery many times and each recovery is different. I’m really hoping that this one is easy because I’ve developed an intolerance to narcotics. So, no pain pills for me to come home with. My husband has a call in to my migraine doc to see if there is any options. I do have some meds from her for migraines but I don’t want to use those without her telling me exactly what to use and how often.

Depending on my recovery, I may be on here a lot, or I might not be able to be on here much at all. Hopefully, I can post again before then.

My senior quote in high school: “By the time you figure out what makes the world go around, you’re too dizzy to care” hmmmmm, prophetic?

Me So Stoopid!

On May 26, 2013 By WendyIn Chronic Illness, Headaches6 Comments

I know I’m having a hard time with cognitive issues lately. I can’t remember a lot, and there are times I’m just confused. I should have taken precautions because of this…but I didn’t even think about it.

I goofed on my medication. Don’t say it…I do have a medicine box….and Stuart fills it for me lately because I’m so wonky in the head, however, I always take my Diamox (the medicine that keeps my CSF lower) at a different time than the rest of my meds. I take one as soon as I wake up, even if I’m going back to sleep, I need to keep the night and morning dose less than 10 hours apart. I also take my night dose just as I’m going to go to sleep…..again to keep not too many hours between them. If I don’t I get a blinding headache when I wake up. I also take one in the afternoon….I don’t take any other med in the afternoon, so I don’t have a 3 slot box….just AM and PM. (I hope that makes sense)

OH, I should say….I take one in the AM, one in the afternoon, and 2 at night. (the 2 at night helps stop the headache thing)

Well yesterday, and I’m not sure I didn’t mess up the night before too….I just don’t know, I tell you I’m confused…and it’s worse now. But, yesterday morning I took 2 instead of 1…..my CSF (cerebrospinal fluid) dropped, too low. So I stayed in bed lying flat trying to keep my pressure as even as I could. Not a good day. I did not take my afternoon dose, and I thought that would be it. I went one over, so taking one less should make it right. Ummmm, nope. I took 2 at bed time, and I got so sick! I had a headache at an 8 on a scale of 1 – 10. Luckily, my migraine meds and ice on my head lessened the headache…but I was swimmy headed (as my mother used to say), and very nauseous. And so confused. I will lie here and think, “why am I here?, what am I supposed to be doing?, why does my head hurt? why is the roaring in my ears so LOUD?…” I start to get to get all teary because I’m just so off…..it’s very hard to explain. I feel lost and very anxious about it.

Description from confusedcartoon.blogspot.com These cartoon cats are looks confused. One of them said that " I'm just so confused". Their faces are really crazy as funny cartoon faces. — image from, http://confusedcartoon.blogspot.com/

This morning I woke up and felt great! For the first time in months. Stuart was still asleep and I actually pondered going downstairs and making him breakfast, but didn’t know when he’d wake and wanted him to sleep as long as he could….he’s been feeling a bit run down…I wonder why? Then I got up! Oh no, I would not be trying to navigate the stairs today, I wouldn’t be doing much, but lying flat….again. Damn. I was so happy when I woke up, but that bubble busted pretty fast. I was so ticked off, then Stuart pointed out….how many days have you woken up feeling good lately? None….for a LONG time. So even that is a victory. We’ll get this medication mix up straightened out. (he will be giving me that medication from now on, or until I stop feeling so wonky in the head anyway.)

FYI – Speaking of Stuart…..he has had one or two phone interviews and has more lined up….and possibly an in person interview soon. Most local. I don’t think we will have to move…but if we do, we’ll handle it. As long as we’re together.

Cough….cough….

On May 23, 2013 By WendyIn Asthma, Celiac Disease14 Comments

asthma-airways_lg — To find out more about asthma please click on this picture, or search the internet.

Yes, I am coughing a lot again. I’ve been coughing for quite some time, it got better, but it has gotten worse again. So much so I had a hard time swallowing because my throat has been so raw.

It started getting worse on Friday, I saw the doctor yesterday. She says my Asthma is not uncontrolled. So I’m on a different inhaler for a while, she said I’d probably start to feel better in about 4 days, I know I slept better last night. Thank goodness.

This issue has been causing a lot of symptoms that we thought were from my other illnesses. I have not been getting enough oxygen, they tested it yesterday and it was at 95%, not bad, but not great…..and I wasn’t having an attack, so my oxygen levels will drop a lot during those times. I was also given another test…and frankly I’m not sure what it was called, I had a hard time hearing the doctor, her frequency just wasn’t hitting right. Anyways, the test showed how much air you can expel when you blow out as hard as you can. It was supposed to read 380, the highest I could get it was 300, I had to blow 3 times, and I almost passed out.

So what does this mean? Not getting enough oxygen, and not having my lungs working properly can be causing a lot of my dizziness lately. Especially when I go from sitting to standing. I was getting worried because I can’t walk from one room to the other without getting winded and the room starts to move. I thought the getting winded was because I can’t really do cardio, it hurts my head too much….it raises my CSF pressure. But now I found out that I’m getting winded so easily because I’m not getting enough oxygen. I also found out this is probably why I’m so exhausted and lethargic all the time. I sleep so much, and have no energy to do much of anything except maybe watch TV, and sometimes read. But reading takes comprehension and recall, things I simply haven’t had lately.

Having your oxygen levels just a little bit lower than it should be can really cause havoc. I knew my mother was going through a lot when she had lung cancer, and her oxygen levels were low, but I feel so much more for what she had to put up with. I remember the insurance company not wanting to pay for my mother to have oxygen at home…I don’t remember what level they said she had to have but her’s wasn’t low enough. I can’t imagine losing any more breath than I have and being told I can’t get help. Luckily her doctor called the insurance company and wanted to know how they could say what her patient needed when they aren’t doctors and haven’t examined her. She demanded that my mother get oxygen, and she did. I was impressed with her doctor for that…for some other things, well she took good care of my mother, but she did not handle things well. But that’s for another rant sometime.

So my dear friends, I haven’t meant to stay away so long, or so often. I simply haven’t had the energy. For example, today I woke around 11am, I went back to sleep about 1pm, I woke coughing and sick to my stomach about 3:30pm….it’s now 5pm. It’s the end of the day for most people, and I’ve only been awake for a total of 3 1/2 hours. I will probably stay awake for a few more hours, but I’ll be asleep by 11pm at the latest. You can do the math to see how many waking hours I will have today, it’s too hard for me to think that much.

Update on other things. My darling hubby hasn’t found a job, but he has a phone interview tomorrow, and he had a long talk with a recruiter today (they really think he’d be “perfect” for that job, but we’d have to move to Nashville….if he thinks he’ll be happy, I’ll live anywhere. The big worry he has is leaving me alone all day. He’s worked at home for years now, even before I got sick. I think it will be good for him to get out and go to an office…..I’ll be fine, or I’ll hire someone to come stay with me. Another big worry about Nashville…my doctor’s aren’t there. I’d have to try to find a Neurologist that’s a headache pain specialist because I have to get the Botox shots every 3 months, and I can’t see Stuart taking a day off every 3 months to bring me to Durham. I’d keep my ear doc, after having the second CI implant…..(I still don’t know when, I’ve had to cancel many appointments with him..dang-it.)…I won’t have to see him very often unless something goes wrong. And it just won’t…enough of that!

I mentioned the Botox shots, I got my happy little Botox bee stings on the 7th, and I’m a happy camper! Oh my goodness those things sure do make a difference. I’ve gone from having pretty much, NO, pain free days, to mostly pain free or very low pain days. I’m not afraid I’m going to run out of medication, so I take it earlier and abort the migraine before it takes hold and ruins my life. My doctor also prescribed an NSAID shot that Stuart can give me if I have a really bad headache or have one that last more days. That makes me feel good to know that it’s available. She also prescribed a muscle relaxer….after I asked about it….I feel that my migraines last longer because I tighten up so much during it and just can loosen up even after I’ve taken my migraine meds. She said they do often use that as a cocktail to help. And it has helped! I can’t take pain medication any longer…..unless I want to itch for at least a day. For some reason, I’ve become very sensitive to pain medication. We’ve pretty much tried them all, but since they are mostly all opioids I’m having a lot of the same problems with all of them. And I can’t take NSAIDs by mouth, my tummy does not like them! So that put a big dent in how I could fight my migraines. Now I feel we are on the right track. I hope the Botox last a good while….I don’t want to be bombarded with migraines before it’s time to visit the Botox Bees.

There we have it, an update on my little family……oh Max is doing fine, right now he’s trying to push my laptop off my lap. He loves me so much more when I’m doing something.

“Ow! Ow! Ow!”

On February 12, 2013 By WendyIn Chronic Illness15 Comments

I was awakened, after being asleep less than 2 hours, by hearing the words: “Ow!, Ow!. Ow!”. Imagine my surprise when I realized the words were coming out of my own mouth. Suddenly I realized just how much pain I was in. My head was at an odd angle and my neck was screaming with pain, my head was throbbing, and my stomach and bladder were causing extreme discomfort. As I hobbled to the bathroom I found the words, “Ow!….” continuing to come from my mouth. (Funny thing, I can’t really hear me say it, but when I woke up it really did sound as if the words were coming from outside my body….strange how deafness works sometimes.)

I stretched my neck and put ice on it and it felt much better, my head was also starting to ease some. The pain in my bladder and stomach were a different story. My stomach literally felt like it was being eaten from the inside out. Over production of acid is not a pleasant feeling. I tried to eat a little something to calm the pain down, I took extra medication for my acid reflux, but it takes time to work. I’ve never had it so bad before, I could not touch my stomach without it causing more pain. I would love to have been able to take Maalox, it was always my go-to fix when my stomach was acting like this, but unfortunately I haven’t been able to find Maalox or any medication like it that I can take, they all have something that will cause my fructose malabsorption to attack. I’m happy to report after a couple of days of a pretty bland diet, and extra acid reflux medication, my stomach is once again pain free…..for now. I do try hard to not eat anything that will cause excess acid production, and I don’t think I did eat anything offending before this, however, stress can also cause excess acid production, and the pain from my bladder was causing me much stress.

When I first saw the doctor here I was having pain in my bladder and she tested my urine and found nothing, I have an irritable bladder and we decided it was just spasming. So when this pain started I thought it may be the same. Unfortunately, this pain kept getting worse and worse. Every time I moved it hurt. Sitting was very painful, so was walking. I’m sure everyone who’s ever had a UTI will also know that I was having to go more than usual, but couldn’t urinate once I got in the bathroom…and it was very painful. All of this started on Sunday, the 3rd, I had just finished my antibiotics and steroids for the bronchitis 2 days before. I couldn’t believe I had an infection again. I upped my already large amount of water I drink, trying hard to flush things out. By Thursday, the 7th, I was convinced it wasn’t irritable bladder talking, something was wrong. So off to see the doctor again. Unfortunately, the doctor I’ve seen before is out on medical leave. (I hope she is alright, I mentioned before that she had pneumonia last month, so I’m a bit concerned.) I saw another doctor in the office. Not someone I really want to see again I felt like he talked down to me, as if I was not able to understand things. Stuart thinks I’m a bit too sensitive, and maybe I am, but this visit started off wrong (and Stuart later told me that he didn’t have a good feeling about this doctor either). I told the doctor I have profound hearing loss and could not hear him. He raised his voice a little, but didn’t look at me when he was talking, it didn’t help when I did see his mouth as he had a lot of facial hair and I couldn’t see his lips well enough. I had to rely on Stuart to tell me what was going on. He asked if I’d been running a fever, I explained that my normal temperature is 97.4F, and it has been around 99F recently. He said, that’s not a fever, everyone fluctuates. (Then why ask me??) I told him about just finishing antibiotics and just couldn’t believe I had an infection so fast….he says that antibiotics don’t stop you from getting something else….but it was the way he said it, as if what I said was stupid. I never said they did, I am just overwhelmed that I’ve been sick so much recently. I asked him about a medication I have for irritable bladder that is expired and wanted to know if I should get a new prescription….he went into this long tirade about how medicines don’t explode after the expiration date, and how there have been studies that medication that hasn’t been opened is good for years after the expiration date. I was so confused at how he was talking to me….and yes I heard most of that. I told him that I know different chemicals have different half-lives, and I didn’t know the half-life of this medication. Well he just went on and on about how drugs are not food and they don’t just lose it because of the expiration date.

He did examine me, but I didn’t feel that he listened to me very much. That’s ok, I talk too much when I’m nervous anyway. He told me my urinalysis was negative, but that could be because I was drinking so much water it caused it to dilute the urine too much. He said I had all the classic symptoms of a Urinary Tract and Bladder infection so he was going to treat me for it. He gave me an antibiotic specifically used to treat this type of infection, and told me if I wasn’t better in 48 hours to call the doctor on call or I could wait until Monday and call him. Yeah, that’s not going to happen if I can help it. I’m feeling better. Not well, but better.

On another note….I’m so very proud of myself today!! I took a bath by myself! I even washed my hair! I haven’t taken a bath or washed my hair without Stuart’s help in a very, very long time. I’m thinking over a year. Don’t worry I wasn’t being irresponsible. Stuart was in the house and on alert for my call. He also just couldn’t stay away the whole time and came in to check on me. But I did fine. A little wobbly, but that often happens with temperature changes (cool room, hot water). Or it just happens any time….heck most of the time…so I’m getting pretty used to it and how to handle it. Being extra cautious, have hand holds, non-slip surface under my feet…..

(at this point I got too hot while writing this and started to feel funny, so I had to put it down. Today, Tuesday February 12th, is the first day I’ve felt like coming back to the computer. I think I’ll end this post here If I start where I left off I’ll be writing another VERY long post….so I’ll have to write more soon)

It’s so bad…

On December 16, 2012 By WendyIn Chronic Illness, Meniere's Disease10 Comments

This is the third attempt at writing this post.

So I shall not try to explain things, or guess at things, I’m just going to tell what is happening.

Vertigo!!! Nearly constant. mini spins, mid-line spinning, and horrendous attacks. When I was diagnosed with Meniere’s I was told it could be one of the worst things you can get that won’t kill you, but you may wish it would.

For the past few weeks, I wish it would.

I’m so miserable. I can’t walk without aid, and then it’s very difficult. I often can’t move my head without going into a full swing. Right now I’m having a decent moment, so I’m trying to write.

I’m scared. I went to a doctor here, and he thinks it’s allergies. (I’m not so sure, I take 3 different meds for my allergies.) He put me on steroids and gave me drops to reduce the inflammation. No infection was seen. I feel have been worse since starting the medication. I’m supposed to see him again on Friday, the 21st, but Stuart is calling him tomorrow.

I can’t be left alone. We are having a hard time. Stuart needs to leave to go grocery shopping and such, but it’s almost impossible. He left for a bit last night to shop, and I ended up spinning and terrified. I called him, but of course I could hear when he answered, I just kept saying help. He found me in a lump on the floor. I know it scared him as much as it did me. I am not prepared to take care of these attacks by myself. I know I have, but it is terrifying even with help.

We came to Tucson hoping I would feel better here. Oh how wrong I was! I never thought I would feel worse! The same maybe, but not worse. I’ve seen family once the whole time we have been here. I haven’t seen any friends. I’m just so sick. I often can’t even move my head.

I want to be home where my doctors are. I don’t know if Tucson is doing this to me, or if it would have happened any way, but either way, I want my doctors! But now, I don’t know how we would get home. Riding in a car is torture. I can only imagine what riding in a plane would be like. I often can’t lift my head without spinning very fast.

So that’s all I can write for now.

I made a huge mistake, I should never have left NC. Having family and friends close here is nice, we do have some people we can call on…but this is new to them, how long would the charity last? At home we don’t really have a support system….but I have my doctors….and that’s important! If I could have the support from those here, and my doctors in the same place, I would be a much happier person.

Anyone reading this who are close to us now. Stuart could really use some help….it’s hard for him to admit, but he is overwhelmed by all of this, I can tell.

(also my migraines are back with a vengeance. I think the Botox has worn off. It really seemed to help for a while!)

A cold is not cold, so why do they call it a cold?

On October 23, 2012 By WendyIn Chronic Illness5 Comments

Opps I forgot to Publish this…*smiles* So it’s a little out of date, but much of the info is still good. This post was more of a Freeform post….I just sat down and wrote, if I felt like it or not and didn’t re-read or edit so please forgive the errors that I’m sure are in abundance…..so…here’s for a bit of out dated news (I’m pretty much over my cold, it’s still hanging on with Stuart)

You will not believe this, but I thought I finally published this yesterday! I looked today…no it was not there. I think this post is haunted….read at your own risk.

For the past week I’ve been taken over by the cold virus. (you aren’t normally cold when you have a cold…so where did that name come from….and no I really don’t care enough to try to look it up…just pondering.)

My dear sweet husband that does so much for me caught my cold around day 4 of my dreaded mucus maker. He is such a trooper. I can look look at him and tell how bad he feels and how tired he is, but still he would take care of me. I will admit, I have not been able to walk very well since I caught this virus, my ears do not like a head cold! I started feeling better a few days ago (ok, maybe 2), but when I’d try to walk around I’d start spinning. Back in bed for me. So Stuart has been left to nurse his own cold and take care of me too. We’ve had a lot more takeout this week. Honestly, for me, just put my meds close enough and feed me (a lot, this cold has made me ravenous….strange for me when I’m sick!), and I’m ok. I have been sleeping more than I thought possible.

Oh, I must tell this story. I always thought I was very careful with my medications….but I did a really stupid thing the other day. I have my Diamox sitting by my bed because I have to take one as soon as I wake up to keep my cerebrospinal fluid regulated. I reached for it and took a pill….then thought, that pill was way too small. I then really looked at the pill bottle. My prescription for Ambien had been left on my nightstand, instead of in the drawer, and I took one of those. You can guess what happened, I went back to sleep and slept all day! But first I decided I should try to do a couple of things….like answer some emails….not the best idea. My husband also told me of one thing that happened that I don’t remember at all. Yes, I thought I had always been very careful with my medication, but I will me much more diligent now!

As a result of this cold I shared with my hubby, we have decided to post pone our leaving for Arizona by a week. We should be leaving on the 3rd now. The cold just put us way behind in getting things ready to go.

It also postponed my hair appointment. So it’s still long. And I may keep some length. The test results didn’t show any reason that I should be losing my hair, and my doctor said I may want to see a dermatologist. But she also put me on Biotin. I changed my shampoo and condition to one that is supposed to give you more lift or something, I got a real boar’s hair brush, and I’m taking the Biotin. Much to my surprise, I looked at the back of my hair this morning and I couldn’t see scalp. I asked Stuart and he said he didn’t see the “balding” spot I’ve had for a while now. My hair seems to be getting thicker. So….my hair appointment has been changed to Halloween. We’ll see what happens. Stuart said it could be a horror, or perhaps magical. (the magical suggestion came after I told him he was mean and scaring me.)

I’m a bit disappointed we are leaving later now. I love Halloween, and I’m not prepared for it. The house isn’t decorated, I have no costume, I don’t have the treat bags put together, and would need to purchase more stuff. I think our house will lose its reputation this year. (the first year we lived here we had less than 20 kids Trick or Treating….last year we had about 100, they come from different neighborhoods to come to our house….it has kind of gotten a little out of hand….but I love it!) But I’m not prepared! This year, the kids will just get candy. (normally, they all get treat bags…made for different age groups…with things like pencils, stickers, Play-doh, glow sticks, temporary tattoos…..all kinds of things….plus they get candy.) yes, my house is the house to come to! We often have a grave yard set up with a fog machine….oh I love Halloween. The decorations are just so cool.

Yes, I’m rambling a bit. I’m still tired from my cold and when I’m tired I ramble….or sleep…..I think that’s next. No wait, I’m hungry!

BTW: I always buy my treat bag goodies right after Halloween for the next year, I don’t spend a lot….and it’s really worth it to see how the children love them.

Migraines, Vertigo, Disequilibrium, Pain – mix and repeat often

On September 22, 2012 By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain12 Comments

Where have I been you ask? Or perhaps you haven’t noticed (don’t tell me, I want to think I was missed) I haven’t been commenting as much on other blogs, or chatting away on mine (I know for a while I’ve been a little silent here so you probably didn’t notice), I haven’t even been able to answer emails in a timely manner. I logged on today and I had over 230+ emails in my inbox. Normally there are about 30…so how many days has it been??

I’ve been much sicker, if that’s the word to use, lately. I’m not really sick, it’s my chronic stuff, plus a little oops added in. First I’ll tell about my oops.

I know in my last post 30 things you may not know….. I mentioned how hard it is for me to wash my hair. It’s normally easier in the bathtub than the shower (I’ve fallen too many times in the shower), but I’ve decided that my bathtub is evil. I’ve had heart palpitations in the tub and nearly passed out, I’ve slipped a few times trying to get out, once I smacked my head against the wall. My latest fight with the tub? I pulled the tendons in my left ankle, and knocked everything out of whack on that side from my foot to my lower back, while I was lying in the tub. Yes, I said, LYING IN THE TUB! Only me right? Ok, it was a little more than just lying still. I had scooted down in the tub to rinse my hair, then I pushed with my feet to scoot up – my left foot slipped and went in a direction it shouldn’t have. But I must say, it really didn’t hurt. When I got out of the tub I could stand fine as long as I didn’t go up on my toes. So I’m thinking, no big deal. Then Stuart looked at my ankle and said, “Oh My!”. My ankle was very swollen!! My lower back hurt, but my ankle really didn’t. If you touched the swollen area it hurt, but not much. This happened last Friday night. On Wednesday the swelling was down and I had a massage, she helped the leg and back, but last night my ankle was swollen again. (not that I’ve been on it, I had vertigo all day yesterday so I was in the bed.) So now you know. I am afraid of my tub and shower….makes it pretty hard to keep up personal hygiene, but I manage….thanks to that darling man of mine.

What else had been causing me frustration and just plan fear lately? I was supposed to have the Botox shots for my migraines on the 18th, my doctor was sick and they had to reschedule….they wanted to make the appointment in November! We are leaving for Tucson, AZ the last week on October, we won’t be here in November. So they scheduled it for October 20th…I cried. I had the worst time with migraines this past month. Right before my period started the pain started…they gave me special medication for that time of the month, it didn’t work. I had 15 days out of 20 were spent in a dark room, often without any hearing device on because the light and sound would make me throw up. Throw in some vertigo, and we have a great party going on. Luckily, the appointment has just been changed to October 3rd. This should be during my period, so it will be a real test. Big problem now? If it works I need to have another shot regimen in 3 months, we won’t be here. I’m not sure I can find a neurologist in Tucson who would be willing to see me just once to give me Botox injections. Actually, I doubt I will be able to, so it will be more like 5 months between injections.

Recently I’ve been having more vertigo, and constant disequilibrium. Frankly, it scares me. I’m pretty sure some of this is Cerebrospinal Fluid Pressure. We changed my medication that controls the high pressure to a times released form instead of the kind I have to take numerous times a day (I kept missing one). Since I’ve been on this new version of this medication I’ve been having symptoms like I did when my pressure was too low. I started back on the regular form of the medication yesterday, I hope this really is what’s wrong. Because the vertigo is scary. I’m proud of myself about how much better I’m dealing with it. I don’t panic as much, I’m sure I would if it was a severe attack. My biggest fear I have is that when a severe attack hits it will never end. I’ll give you an example of my days…Yesterday I woke up to the word spinning, slowly, but still spinning…this went on all day. Luckily, I was able to sleep through some of it. Then when it actually got to be bedtime, I couldn’t sleep. So many things going through my head. I kept thinking, something doesn’t add up….but I’m not sure what…at least I finished Uncle Tom’s Cabin…and still laid awake until 5am. Today, I’m not spinning, but I can’t walk straight. I can’t move my head at a normal speed or I will fall down from the disequilibrium. In the past 48 hours, I’ve been to the bathroom once unaided.

OK…I know this is another venting post. But I’m scared. What if the change in medication doesn’t work? Then why is this happening? We’ll figure it out, or I’ll learn to live with it! Right?

The other night I was talking to Stuart and told him that sometimes I envy people who don’t have to feel like I do. Of course, he said that’s natural, part of self-preservation and all that…. I then told him, I would gladly be the only person in the world who had to feel this way if no one else ever did. And I mean it. The thought that others go through this is heart breaking to me.

I do have some good news about my hearing! (unfortunately I had to cancel the last 3 appointments I’ve had with my audiologist because I was too ill to go, so I can’t tell you what she has to say, but I have some Wow! news.) Stuart got The Lorax DVD from Netflix and we curled up in bed and watched it on the computer. I used the direct link cable and linked the computer sound up to my processor. I didn’t expect to hear any better than I hear the TV, I thought I’d mostly read the movie, as usual (thank goodness for closed captioning!), but this was different! I heard the movie!! I heard the characters the way they were supposed to sound! I really heard it all, just right! Isn’t that amazing? That gives me hope that one day my CI will give me sounds that are normal. Right now, I hear better with it than my hearing aid, but sounds are a bit off, however, I understand things more. It’s coming along! And The Lorax is my new best friend!

It’s been a very rough week.

On August 21, 2012 By WendyIn Chronic Illness, Meniere's Disease10 Comments

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.

distorted Wendy — 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.

Well that’s all for this past week.

I promise my next post will be on a happier note.