Strange Days

Today is a strange day. My boyfriend and I packed up our apartment, and he headed down the road to our new destination – we are moving from Jasper to Calgary (hm, seems I will have to change the title of my blog... Meniere's Disease in the Mountains won't work anymore! Back to my old title I suppose : ) ). I will be staying up here in Jasper for a few more weeks, staying with a friend. I don’t yet have a job lined up in the city, so it didn’t make much sense for me to leave quite so early. I will join Cole in the city in mid-November.

I am both excited and nervous about this move… nervous because I don’t have a job (yet!), and because this is the biggest thing that I have ever done with someone else. I have moved across the country, and done plenty of challenging and interesting things, but they have always just been about me. To think that I am doing this with Cole is both thrilling and scary – but also wonderful and exciting! SO many mixed emotions. I will miss this wonderful mountain town so much, and will miss the wonderful people that I am close with here even more. The city brings lots of new and fun things, which Cole and I are both really looking forward to! It will be refreshing after having been in a small town for so long.

I am happy that I will be closer to a specialist – and was referred to a new doctor in Calgary by my dizzy specialist back home. I do not have an appointment yet, but hopefully it doesn’t take to long to get in, and I will be able to have some tests done soon (I keep forgetting to call the office during work hours. I tend to avoid things that I don’t want to deal with, and while these tests will lead to new treatments and healing hopefully, I know they won’t be fun to go through, so I think I am avoiding a little!).

I had a really bad spell last week, and dealt with my ears being really ‘off’ for several days. Wednesday night it got worse and worse, until I was in full blown ‘attack mode’. I tried a sleeping pill for the first time – something just prescribed by my GP here in Jasper. Its effectiveness was rather limited, as I threw up very soon after taking it. I am not entirely sure if it was the pill that made me throw up, or of it was just time – the pill DID seem to expedite the gut expulsion process! Throwing it up was also quite terrible – if you have ever thrown up medicine and had that terrible metallic/medical taste in your mouth, you know what I mean!

I am doing my best to keep my stress level down, but with this move, and hunting for a new job, it’s not easy! Hoping that I can find work, and that we can get settled in a new place quickly. With lots to do and think about I really can’t afford to be sick right now, but I know that both negative and positive stress can make me more susceptible to a spell, so I will keep my fingers crossed and keep doing everything that I can to avoid it!!

Let's Catch Up....

Once again, I am a bad blogger! It has been a while since I updated…. I have been trying NOT to think about it!

I finally got to see my specialist, Dr. John Rutka at the beginning of the month while I was back home for my long awaited trip and  very good friend’s wedding! The trip was great, and for the most part I felt pretty good while I was there. I had to excuse myself form a couple of events early, and was sick in the middle of the might one night, but happily I managed to avoid any major spells… yay! I am always a little bit unsure when it comes to travel, as between the change in both routine and altitude, as well as the fact that I am likely more tired than usual, I know I am more likely to have a spell (I find too that both negative stress and positive stress seem to leave me more susceptible to a spell – my body doesn’t know the difference!). I try to keep care of myself as best as possible while travelling, and I think that helped me.

As for the specialist appointment… I made a small amount of forward progress. I reported my symptoms, including increased hearing loss, tinnitus, and ongoing spells. Dr. Rutka outlined the three options that I have, which I was essentially already aware of (gent. injections, steroid injections or a small device with a handheld component that helps with aural pressure). He could not suggest which might be best, as I need more, and updated, testing. He is to refer me to a dr. much closer to where I now live who can do the testing for me, which I am actually looking forward to. I have yet to hear back from this referral, but am planning to follow-up if I don’t get a call back next week. I know these folks are busy, but it has been nearly a month!!

While I didn’t get any real answers or solutions, it is nice to be on what seems like the right track. I have read some review on the doctor that I have been referred to, and they range for horrible to absolutely glowing. I like to make up my own mind about people, but I certainly found this interesting!

I did forget to ask Dr. Rutka about prescribing me a medication to help me sleep/stay asleep when I am having a spell. Gravol used to work wonders, but I think that I am getting somewhat immune to it, taking it so often. I know that a lot of patients in the US are prescribed Vallium, which scares me a bit! I’m not opposed to it, but wondering about other options too. Let me know if you have any input!!

I had a spell yesterday, and had to miss work, as well as an interview with the local newspaper for a writing position. I was very disappointed to miss this interview, as I had been really looking forward to the opportunity. Unfortunately, I do not have another change to interview right now, but maybe in the next few months. I can’t help but feel like my Meniere’s kept me from this opportunity, which makes me feel very frustrated. At the same time, I suppose everything happens for a reason, and maybe this just wasn’t meant to be. Trying to stay positive, even though I am having a bad day today... I just feel like things have been boiling up lately - feeling frustrated with work, some relationship 'stuff', and of course always battling Meniere's. Today I just felt frustrated, especially when a few things at work made me really frustrated... kind of reached a boiling point. I am feeling a little bit better now, and hoping to go and enjoy some nice warm weather and sunshine soon : )

Right on Schedule

I'm still on my usual schedule of on spell a week, as I had one on Monday - luckily it wasn't too bad though, and I was able to go to work on Tuesday (fairly unusual for the day after a spell!!). I am going to up my dose of serc, and am hoping that helps, as I am out of options now until I get to see my specialist on August! I live 4 hours away from the nearest large city where someone might be able to help whit with Menieres (not on in town knows much about it!), which can be very frustrating. I will be on the others side of the country when I see my specialist in August, which is not very handy for follow-up!! I am hoping that he can refer me to someone out here. I wouldn't trade where I live for anything, but it's not terribly helpful being so far away when I need medical help/advice!

I have been having a good week since Monday, and got to my lunch time yoga session today - I missed a few between being sick, and having meetings at work, so it felt good to get back into it!! It has been raining a lot here in the Rocky Mountains, and some sunshine would be a nice treat... hopefully soon we'll actually get real summer weather soon!!

That's all for today... Happiness and health to all!

Drop Spell

Well, I am sad to report that mere hours after I wrote my last post, I had another spell. I was just preparing to enjoy a great sushi dinner, when I became dizzy very suddenly. Within 10 minutes I was spinning with vertigo and ready-ing for ‘combat’ on my bathroom floor. This is often referred to as a ‘drop spell’, since it happens so suddenly. Some people with Menaires get these quite often – I am lucky enough to only have had a few so far. They are one of the more dangerous things that can happen to those of us with MM, and can be fairly upsetting (especially when one gets in the way of sushi dinner!!). I had to call in sick for work two days in a row, as I was still dizzy the next morning when I woke up, and wasn’t right until a full 48 hours later. That meant almost 4 days straight of feeling sick… not fun!!

I have just started a lunch-hour yoga course, which I will be taking twice weekly for the next six weeks. I am really excited about this, am very much looking forward to getting back into my yoga practice (I’ve been slacking a bit lately), and to see if it has any effect on my MM – I have been sick frequently lately, and maybe the yoga will help. It is certainly beneficial for my body and mind, but it is a little advantageous to think it will truly have an effect on my MM – as it hasn’t in the past, but one can always hope!! Stay tuned, as I often say.

PS I changed the blog title and look a little, hope y’all like it! Still getting the feel for it…

UHG Day

Yesterday was a write-off for me - I slept in, but woke up feeling 'off', and though I just rested (and watched Heroes!) all day, I just felt worse and worse until I was fully sick and making trips to the bathroom by 6 pm. Very frustrating, as I was hoping to enjoy a day off with my BF, but alas I was on the couch all day, feeling terrible (I did get to spend the day with Cole watching Heroes though; he is wonderful to me, when I am well or sick!). It was a funny day, because I wasn't dizzy per say, but my head just felt very heavy, and my stomach was bloated and off as usual. Do any of you out there with MD get days like that, too? I took my serc and trizide when I woke up in the morning, but they didn't seem to help, obviously. Funny how last week I had a SUPER dizzy spell that didn't last too long, and then this week had one where I wasn't very dizzy, but it lasted for 12+ hour. I'm not sure which is worse!!

I'm looking forward to enjoying the rest of my week - have a few things planned, including a date night with Cole - so fingers crossed for a healthy rest of the week!

Nagging Thoughts

Well, I got away with almost 2 weeks spell free… but alas not. I woke up in the middle of the night on Sunday, and didn’t even realize anything was wrong at first… I stood up to go to the washroom, and almost fell flat on my face! I haven’t been that spinny in quite a while, so it was a little unnerving. My discomfort increased, and the steadiness of my stomach decreased… I was awake for about 2 hours or so, very, VERY uncomfortable and back and forth to the washroom the whole time – actually considered just bringing my pillow to the washroom, seemed like less work to just stay there (wouldn’t have been the first timeJ ) ! Luckily I have Mondays off, so I slept and slept until about 2 pm on Monday, and felt okay upon awakening. Yay! It was the most ‘violent’ spell I’ve had in quite a while, but at least it didn’t last long.

I am greatly anticipating a trip that I am taking home to Ontario in August – only 74 days away! I will be home for a good friend’s wedding, and will be bringing my wonderful boyfriend with me to meet the family (and friends!) there for the first time. I have lots of great plans made… but that little voice in the back of my head keep popping up when I get to excited, and brings up those nagging thoughts... ‘Hm, what if you get sick? What if you get sick the day of the wedding? Or if you can’t go for dinner to that favourite restaurant? What if you’re spinning and can’t drive to the airport to pick Cole up?’ I hate these thoughts, because as much as I know to ignore them and not focus on the negative… easier said then done. It COULD happen! It is these same thoughts that come up when I think about how fabulous it would be to take a year off life and go explore the world, or pursue my ultimate dream of travel writing…   

I know that there are much worse things that many people face that make it challenging to do things and follow dreams that they may have… I am lucky to only have to deal with this, as frustrating as it is. When it come to specifics, like the Ontario trip, I just have to keep reminding myself that no matter what it’s going to be a great little trip, and if I get sick, well I’ll get sick and deal with it when it comes. Ultimately I hope that I’ll be feeling at least a little steadier by then, but who knows. Stay tuned!

What a Day

Well, today work has been crazy, I finally (?) signed up for Twitter, and the sun is shining.

It also marks a week and a day since my last spell... BUT, I am trying not to think about it!

I appreciate the reaction to my blog so much - it is awesome to put something out there, and get a lot of interesting, compassionate and helpful feedback. Thanks to everyone who has commented and/or e-mailed me.

Ironically, I actually was more social than usual this weekend, going on a rafting 'booze cruise' on Friday, a wonderful sushi dinner and then drinks on Saturday, and then a great girls night on Sunday. I figured I would be out with a spell since I messed with my sleeping patterns, but seem to be having a good health week, regardless!! Who knows, maybe it's just my new med regime finally kicking in, or maybe my body DOES like to mix it up once in a while!

My poor boss has been away sick for two weeks with dizziness - I feel terrible for her, as she is having a difficult time of getting back on track. At least she will have increased empathy when I am sick! Speaking of the work place and being sick, I read an article yesterday about a woman who has MS, but has not disclosed this to her colleagues. I found this very interesting. Her reasoning make sense to me, however any work place that would discriminate against me because of my disability is not a place I imagine I would want to work. It can certainly be difficult to put out there the things that affect us, and may cause us to be 'different' than your 'average' employee, but I think that it is important for the betterment of our society that all types of disabilities be recognized - only in this way can we work towards a society that is inclusive of all. Society often tells us that showing any kind of weakness is bad, and that we should hide our flaws, sometimes at any cost; I think that many times it is our flaws that truly make us who we are, because it is often the weaknesses in things like our health that truly make us stronger individuals in the ways that actually count.

You can ind the article on the Globe and Mail's web site: http://www.theglobeandmail.com/life/facts-and-arguments/the-essay/why-ive-chosen-to-hide-my-ms-from-co-workers/article2023933/

Once a Week....

I really should start writing about my good days, too! Had a spell again yesterday, which keep me on the schedule I have been living of one a week. I had to miss work this time, as well, which adds to the frustration, especially since I am covering a maternity leave and don’t have sick time benefits right now!

I am feeling frustrated because despite doing everything ‘right’ (meds, sleep, diet), I am still getting sick with almost alarming frequency. With still three months to go before I see my specialist, it’s hard to know what to do. I know that the doctors in my small town won’t be able to offer any suggestions I haven’t already heard, but I am tempted to try anyway. It would be nice just to have a break for a couple of weeks, especially now that the weather is getting nicer! It seems to be that the way the weather affects me, I often end up ‘sick’ on sunny days – that’s just mean!!

I find that my mind races sometimes when I am sick, and I often think of seemingly profound thoughts and ideas while I am laying in bed in discomfort – these ideas seem to either fade away, or are not nearly exciting the next day when I am feeling better. I swear if I could manage to work a key board while I am sick, I’d have a book written by now!! I need some voice to text software I suppose!!

I really would like a break form this – endless nights of spinning and nausea followed by days of exhaustion are not fun. At least time to recover from one spell before I have another would be nice!!

The H Word

Well, last week I had my first spell in a while, and it was a big, bad, scary one. It was also a frustrating one because it came on very, VERY suddenly, and meant that I had to cancel plans I had that night with a girlfriend. I wasn't spinning as much as I have, but very ‘off’. This one was based more around my stomach than anything - I was in the bathroom every 5-10 minutes for about 7-8 hours straight, only finding relief when I managed to fall asleep briefly.

This is one of those spells that has me contemplating a trip to the emergency room while my head is buried in the toilet. I know that there isn't much that they could do to help me, an IV for fluids, and something to help me sleep would be welcomed. However, the sheer idea of going to a hospital is quite daunting. First, I would have to get out of the house, and get myself to the hospital, which would be reasonably easy since I have a great boyfriend to help take care of me when I am down and out. The 10 minute drive to the hospital would be okay, as riding in a car often soothes my symptoms, at least until it stops. But then things get scary... the thought of walking into a brightly lit emergency room, having to explain my situation to likely several different people, and having to wait to be seen, all while throwing up at the rate that some people breathe, is essentially terrifying to me when I am in the middle of a spell. I am happier to stay in my dark room, propped up on pillows and forcing myself to take a couple of sips of water or Ginger Ale after every time I throw-up. There have been times that I have been very close to going to the hospital, such as the one time I have thrown up blood - and one time when I did go to the hospital, which was the day after a particularly bad spell when I was too weak to do anything and fainted (alone in my apt!!). There are times when I likely should have gone, but as noted, the entire prospect is just far too daunting. I would be interested to know what other folks who have gone to the hospital during a spell have faced….

I am having a better week so far this week, and even got to engage in a conversation with my pharmacist yesterday, who had never actually talked to someone with Menieres, and had many thoughtful questions for me. Always happy to educate!

Spring

So I guess I haven't been a very good blogger!!

I have been doing well lately - have not had a spell in almost two weeks now (knock on wood!!). I have been doing my best to get a good amount of rest, and to eat well, things which I know help me, even if just psychologically. I have also been doing yoga almost everyday, even if only a few relaxing poses, and have been on a run outside - even though there is still snow on the ground. It feels good to get out and start to feel healthy again - but I do live in a bit of fear of when my next spell will happen. They can be so unpredictable, and can throw off even the healthiest regime.

Stay tuned.

Today is a 'Good Day'

One of the most frustrating parts of Meniere’s is the lack of specific definitions, and how it differently affects each sufferer.

When I am in a situation where I need to tell someone about my Meniere’s, I usually just tell them I have an ‘inner ear thing’. Only when I need to be more forthcoming and provide more information, to I actually use the title Meniere’s – why? Because no one has heard of Meniere’s, they don’t know what it is or how it affects me – it’s a lot easier to say ‘I get dizzy spells’, or ‘I have an inner ear thing’.

The main pitfall of this is that people naturally attempt to offer suggestions or stories about their sister’s friend’s uncle’s dog walker who had dizzy spells and managed to solve them by specific stretches/certain pills/eating carrots/something else that either sounds ridiculous to me, or that I’ve already tried. Not that I don’t appreciate people trying to help, but this isn’t your run of the mill dizzy spell.

For those who may not know… Meniere’s is an idiopathic disease, meaning that doctor’s don’t know what causes it (a source of much frustration for those of us diagnosed with it). It affects the ear(s), and many other bodily systems. It causes severe vertigo, ringing in the ears, hearing loss, severe nausea, headaches and more. Some people will have ‘attacks’ that last days or weeks, some just hours. For me, a spell typically lasts 8-12 hours, during which I am dizzy or simply off balance at best, or have extreme vertigo at worst. Along with this, I get very bloated and nauseous (I have had days where I throw up every 20-40 minutes, all day) – the type of nausea does not discriminate, as when I am having a spell I can consume ginger-ale and crackers, or a steak dinner, or simply water, and I’ll be throwing up no matter what.

Everyone spell is different, as sometimes I get VERY dizzy (I have at times had to ask my family or someone with me if the room is ACTUALLY spinning – as I cannot seem to make it stop going in circles), and sometimes the sensation is more of a headache and feeling of being off balance. Sometimes I will throw up countless times, sometimes only once, or not at all. I am very lucky in that I do not get much ringing in my ears, but I notice that I hear more non-noise in my ‘bad ear’ as I get older. I also have a constant loss of hearing in my right (‘bad’) ear. Meniere’s typically affect only one ear, at least at first, but can affect both (this is termed bi-lateral Meniere’s). I get my spells a few times a months, and can be debilitated with them for a few hours, or a couple of days. I have at times gone for 3-4 months without a spell, and at other times had them once a week for several weeks on end.

Some people with this condition live with loud ringing in their ears all day everyday, some have complete hearing loss, some are dizzy more often than not. I consider myself very lucky to not be one of those people, and as I try to remind myself when I am feeling sick and low – it could always be worse.

I have just come off a bad stretch, two weeks in a row when I had to miss 2 days of work due to my spells. Last week I 'got to' work all five days, and this week is going okay so far for me. I did have a cold, which always seems to throw off my head, and caused me to have a spell with extreme dizziness. I have been taking a weekly yoga class, which helps me to relax, which I try to tell myself keeps my spells at bay. Of course there are no guarantees, a spell could sneak up on me at any time – but I take it one day at a time, and today is a good day, so far : )

Welcome!

Thanks for visiting, and welcome to my blog about life with Meniere's Disease!

A 'unique' and very challenging condition to deal with, life with Meniere's Disease can be scary, isolating, and immensely frustrating. If even one person who suffers like I do can find this blog, and feel some sense of connection, I will be happy!

My story with this condition has many hills and valleys, as does everyone's. The basics of my story go something like this:

I was diagnosed with Meniere's younger than most - I had only just turned 19 when I had my first 'spell', as I refer to them (six years ago!). I was in university, and living in a townhouse style student accommodation in St. Catharines Ontario. One of my first spells came in the middle of the night - waking up dizzy and nauseous was terrifying - I managed to 'sleep it off', but when I had 2-3 more of these spells, I decided that this was NOT okay, and that I needed to get checked out. Not only was it strange and scary, but it was interfering with my life - I was a varsity swimmer, involved in student government and other volunteer pursuits, had a part time job and school work, too! The nurse at the health clinic immediately assumed I was pregnant (spells of nausea, extreme fatigue), and tested me for that. Once it was determined, a few times over, that I was NOT pregnant (sometimes I think that would have been easier...), I was checked out in further depth. Unable to find much, I was referred to an ENT. It was determined that I had a loss of hearing in one ear, and more tests were done. Many ear tests, and at least 4 MRIs, and nothing really in way of a diagnosis. Meanwhile, I was still getting these spells - in the beginning they were almost all the same, the room would spin, my stomach would spin, and I was just generally miserable. The spells seemed to get better, lifting from once a week to once a month or so, which allowed me to go about my life a little bit more 'normally'.

I was finally referred to a 'dizziness specialist' in Toronto. After several tests, some of which actually MADE me dizzy (seemed counter productive!), I was offered a diagnosis of ‘Meniere’s Disease’. While this didn’t really mean much to me or my family, it was a relief to have a name for what I had been experiencing. I was followed by this doctor, have gone though several more tests, tried numerous drugs, and many other treatments for my condition.

I now live out in Jasper, Alberta, at least four hours from the nearest specialist who may be able to offer me assistance. I recently made an appointment with my doctor back in Toronto, for August when I know I will be back in Ontario. The last few years I have been up an down – sometimes enjoying more than three months without a ‘spell’, sometimes feeling crappy everyday but managing to exist, sometimes being hit with a debilitating spell unexpectedly on days when it is terribly inconvenient. I have tried being ‘drug free’ or taking my prescriptions religiously, I have tried not eating salt, I have tried meditating and crystal healing, I have visited naturopathic doctors and tried various remedies, and yet it seems that Meniere’s will simply do what it pleases. I will never stop searching for something that helps, because while I respect that I could suffer with something much worse than Meniere’s, and that it not a fatal condition – it is still something that I would not wish on my worst enemy.

Please feel free to contact me with questions, stories, thought or feedback on my Meniere’s musings. If you are reading this, and like I did, feel alone, frustrated and occasionally pretty hopeless, know that you are NOT alone. There are others like you, no matter who or where you are, you are NOT alone.