I have not been blogging regularly due to being too busy living life. That is great news and I'm not complaining by any means, but I do always have random ideas floating through my head that I wish I had time to put out into cyberspace. I like to be able to share my experiences if only to inspire someone else who is struggling to live with Meniere's disease.
Today, my day off, I have a litany of things I "should" be doing, but I really wanted to summarize my experience thus far with the allergy testing and treatment I have been undergoing at House Ear Clinic with Dr. Derebery. This is a long, wordy post. It is not meant to make up for lost time blogging. It is just that I don't have much time to spend on editing today and I'm not sure when I will have the time so I will just post as-is.
I chose to pursue this line of treatment because, despite all that I have tried, including IT and oral steroids, diuretics, IT gentamicin, oral and nasal allergy medications, and antiviral medication (which I still take), I continue to cycle through Meniere's attacks on a regular basis. The symptoms and pattern have morphed over the past three years and my most recent attacks seem to be occurring every 1-3 weeks and consist of 2-3 weeks of minispins throughout the day, general dysequilibrium, chronic low-grade nausea, fatigue, brain fog, and a buzzing sound and sensation in my right ear. The attack eventually abates and I am left virtually normal except for a soft whooshing sound in my ear and a little positional vertigo if I turn my head a certain way - all very tolerable. The time during the attacks, however, not so much. Though I get by.
I have blogged previously about the beginning of my allergy journey and I've mentioned that I had never considered myself an allergic person. However, since starting this line of inquiry, I've found that I definitely do have some problems. Most notably with dusting and vacuuming. For 24-48 hours after doing this kind of cleaning, I notice a significant uptick in my symptoms. The more dust I am exposed to, the worse it is.
So I wrapped up the second part of food allergy testing on Tuesday and was relieved, though not surprised, to find out that I did not test positive for any common food allergies. As I had previously tested positive for several inhaled allergies to things like cats, molds, and common local plants, Dr. Derebery recommended allergy shots. She explained that for some people, allergic reactions can manifest in our ears. She is adamant that she does not attribute allergies to the cause of Meniere's disease, but her studies have shown that attacks can be minimized by treating coexisting allergies. She goes on to say that oral allergy medications typically are not effective enough and do not cross into the inner ear where the reaction is taking place, hence the allergy shots are the only way, other than avoiding all allergens, to effectively treat the symptoms.
I started allergy shots about a month ago and I honestly cannot say up to this point if I've felt worse or better in relationship to the shots. Dr. Derebery said to expect it to take about three months before noticing a significant difference in my symptoms. In the meantime, I will continue to take weekly shots and this week I even learned to give myself my own shots. I was a little creeped out about the thought of doing so, I hate needles, but my 16-year old niece who has had type I diabetes since she was five inspired me. If she can give herself shots of insulin several times a day, I can give myself an allergy shot once a week. I was surprised to find it was painless! I had been getting the shots in my upper arm and that would be a little sore, but now I give them in my hip where I guess all that fat really helps to blunt the discomfort. Woo hoo!
In addition to the weekly shots, Dr. Derebery also recommended I follow a yeast-free diet. Apparently about 10 years ago, some doctor claimed that people with mold sensitivities (i.e. Moi) are more likely to have cross-reactivity with yeasts in the diet. At the time, Dr. Derebery said, this doctor's assertions were poo-pooed by most allergists, but now recent studies have given some credence to the theory so she has begun incorporating the recommendation into her own practice. While I was given written instructions of what foods to avoid, a quick Google search, if you're interested, will yield lists of foods to avoid including, but not limited to, bread (duh), all alcoholic beverages (boo), cheese and yogurt (wah), anything with vinegar (lots of those things), dried fruits, and most processed foods. I am going to have to really think about this one. Many, many of these foods are in my regular diet and I already have a hard enough time finding things to eat that are relatively low in sodium, which I try to stick to if only because it is good for you, and also does not contain beef, pork, cod, or pollack. The first two meats = yuck. Cod and pollack produce a terrible GI reaction in me and we'll just leave it at that.
One final diet recommendation Dr. Derebery apparently recommends to just about everyone is not to eat the same foods two days in a row. Apparently it is felt that by eating the same foods everyday, the immune system can become over-sensitized to the allergens (proteins) in the foods and eventually put allergy-prone people at higher risk for developing a food allergy. So she recommends a 4-day rotation of foods and provides a rotation diet cheat sheet to help with this. I have to say that at this point in time I have enough on my plate. This is enough to push me over the edge and since I am not struggling with any direct food allergies, I am going to respectfully decline to put much effort into this right now. Given that most people in the world eat the same foods every day for their whole lives and are the same populations that have the lowest rates of allergy in the world, I have to second guess this recommendation. If true, I am sure it's our first world habits and culture that have somehow set us up for immune dysfunction in this regard.
I think that about summarizes things for now. During the bad weeks, my mind spends a lot of time considering a laby. I had a hearing test this week and my speech discrimination in my right ear is down to 44%. And I think some of the words I got right might have just been good guesses. I really wasn't sure about anything I heard in that ear. At some point I'd like to discuss the laby option and consider having some testing done to pinpoint just how much vestibular function I have in my bad ear. If not for the fear of going bilateral, I would have no second thoughts about having a laby. But I have to remember that this bad ear is going to be of little help in the event of my good ear going south anyway. Something to still consider, but I need a little break from doctors and appointments for now. I am still grateful to gent and antivirals for controlling my symptoms just enough to give me more time to consider all of my options and still get by in life.
Thursday, January 26, 2012
Tuesday, January 10, 2012
Riding the Waves of Uncertainty
Yesterday my employer informed us that our company has been purchased by a multi-billion dollar corporation. This news wasn't entirely unexpected but I think most of us had hoped we would be picked up by another investment group who would allow us to continue along our current business model. Our manager admits he doesn't know what exactly this will mean for each individual, but there will be some duplication of positions that will need to be eliminated as the merger between "them" and "us" occurs over the next three to 12 months. My colleague and I are not optimistic about our lot for several reasons. However, we will heed the advice of management and keep our noses down and our attitudes positive.
I work for a relatively small home infusion pharmacy that has made some steady strides in growth over the past two years. I've enjoyed being part of a company it's size - not too big, not too small. I've had the opportunity to work on cases with employees at many different branches and across many disciplines. Many of the employees have been with company for a long time. I suspect the feel will not be the same under the new ownership.
On a positive note, if I am retained, the new company is said to have great benefits. Oh, wait. I don't qualify for those benefits as I am a per diem employee. In fact, if I am laid off, I don't think I will even qualify for the rumored severance package. Given my health and the fact that I have three young-ish kids at home, I have chosen to work part-time. The only problem these days with part-time work in the healthcare field is employers tend to consider part-time as working 32hours per week. Yup, four 8-hour days. Those of us wanting to work a little less, even though we hold a regular schedule, are relegated to per diem employment. The pros: I set my own hours and only have to commit to work a minimum number of hours per pay period. The cons: no health benefits, no retirement benefits, and probably no right to a severance package. It's been a fair trade, I suppose, given the circumstances of the past three years.
It's only been 24 hours since getting the news, but I've been sitting with my feelings and considering the possible scenarios. If I am retained by Big Brother, there is the possibility it will be with the caveat that I work more hours - or fewer. I really don't want to do either. I work about 20 hours a week now and that is perfect. I may be required to do more work out "in the field". I admit I have missed face-to-face patient and customer contact tremendously in this position but, given the unpredictable nature of my health from one day to the next, it has been a relief knowing I only have to show up to my quiet, nearby office on work days. My communication with others is limited to a few office staff and phone contact with patients. If I am required to spend more time in my car or in the field, I am not sure I can do that reliably. I know I cannot. Driving itself isn't always the problem, it's stopping. Or rather, on a bad-ish day, the sensation that I am still driving long after I am not. During those times I tend to walk around looking and feeling disoriented. Then there's the brain fog...
On the other hand, I could be let go. Unemployed. God, I love working! I fear staying home all day, every day. I've done this and I almost lost my mind. As much as I admit I am a homebody, I am not mentally equipped to maintain a healthy psyche without outside stimulation. Yet, as everyone in the Meniere's world will understand, the thought of looking for and starting a new job can be just enough stress to send one into a downward spiral - pun intended. I cannot imagine having the energy required to be "on" during training sessions and meeting and becoming acquainted with a whole new group of people. I just cycled through a bad week with lots of dizzies and exhaustion. I managed to get to work every day, but only because I can do my job with my eyes closed - sometimes literally.
This news has bummed me out in another way, too. Before Meniere's, I might have been excited about new prospects. I like a challenge and I enjoy the process of growing personally and professionally. But Meniere's now significantly limits my enthusiasm to do new things. I spend an awful lot of my energy fighting my negative emotions. I have to be mindful. I have to give myself a lot of positive self-talk just to maintain my status quo.
Ironically, I was recently invited to sit on the board of the local chapter of people-who-do-what-I-do. My first meeting is tomorrow night. I will take this as an opportunity to network and put my feelers out for anything I might be able to do should I find myself unemployed sometime in the near future. I will try to keep an open mind and a positive attitude. Best case scenario will be that I can stay in my current position with the same general hours and expectations. But only time will tell and I have to be prepared for anything.
I work for a relatively small home infusion pharmacy that has made some steady strides in growth over the past two years. I've enjoyed being part of a company it's size - not too big, not too small. I've had the opportunity to work on cases with employees at many different branches and across many disciplines. Many of the employees have been with company for a long time. I suspect the feel will not be the same under the new ownership.
On a positive note, if I am retained, the new company is said to have great benefits. Oh, wait. I don't qualify for those benefits as I am a per diem employee. In fact, if I am laid off, I don't think I will even qualify for the rumored severance package. Given my health and the fact that I have three young-ish kids at home, I have chosen to work part-time. The only problem these days with part-time work in the healthcare field is employers tend to consider part-time as working 32hours per week. Yup, four 8-hour days. Those of us wanting to work a little less, even though we hold a regular schedule, are relegated to per diem employment. The pros: I set my own hours and only have to commit to work a minimum number of hours per pay period. The cons: no health benefits, no retirement benefits, and probably no right to a severance package. It's been a fair trade, I suppose, given the circumstances of the past three years.
It's only been 24 hours since getting the news, but I've been sitting with my feelings and considering the possible scenarios. If I am retained by Big Brother, there is the possibility it will be with the caveat that I work more hours - or fewer. I really don't want to do either. I work about 20 hours a week now and that is perfect. I may be required to do more work out "in the field". I admit I have missed face-to-face patient and customer contact tremendously in this position but, given the unpredictable nature of my health from one day to the next, it has been a relief knowing I only have to show up to my quiet, nearby office on work days. My communication with others is limited to a few office staff and phone contact with patients. If I am required to spend more time in my car or in the field, I am not sure I can do that reliably. I know I cannot. Driving itself isn't always the problem, it's stopping. Or rather, on a bad-ish day, the sensation that I am still driving long after I am not. During those times I tend to walk around looking and feeling disoriented. Then there's the brain fog...
On the other hand, I could be let go. Unemployed. God, I love working! I fear staying home all day, every day. I've done this and I almost lost my mind. As much as I admit I am a homebody, I am not mentally equipped to maintain a healthy psyche without outside stimulation. Yet, as everyone in the Meniere's world will understand, the thought of looking for and starting a new job can be just enough stress to send one into a downward spiral - pun intended. I cannot imagine having the energy required to be "on" during training sessions and meeting and becoming acquainted with a whole new group of people. I just cycled through a bad week with lots of dizzies and exhaustion. I managed to get to work every day, but only because I can do my job with my eyes closed - sometimes literally.
This news has bummed me out in another way, too. Before Meniere's, I might have been excited about new prospects. I like a challenge and I enjoy the process of growing personally and professionally. But Meniere's now significantly limits my enthusiasm to do new things. I spend an awful lot of my energy fighting my negative emotions. I have to be mindful. I have to give myself a lot of positive self-talk just to maintain my status quo.
Ironically, I was recently invited to sit on the board of the local chapter of people-who-do-what-I-do. My first meeting is tomorrow night. I will take this as an opportunity to network and put my feelers out for anything I might be able to do should I find myself unemployed sometime in the near future. I will try to keep an open mind and a positive attitude. Best case scenario will be that I can stay in my current position with the same general hours and expectations. But only time will tell and I have to be prepared for anything.
Monday, January 2, 2012
Quote of the Day
“Anger always comes from
frustrated expectations.” -Elliott Larson
This was the subject of a post today at Tiny Buddha. It came along in a timely manner as I woke up with significant brain fog this morning. Today my head just doesn't feel at all attached to my body and just for kicks, I guess, Mr. M throws in a minispin here and there to needle me even more.
I started the day disappointed and a little frustrated. But as the hours went on and I muddled through some housework, I reminded myself that this will pass in a day or two and better days will come. I also reminded myself that I am vertical and, by all outward appearances anyway, am functioning.
So I lowered my expectations for the day and am now floating through the day in relative peace.
Sunday, January 1, 2012
The Versatile Blogger Award
I am humbled by my friend, a fellow blogger, Wendy who writes over at Picnic With Ants for nominating me for this award. I am even a little embarrassed as I have not posted anything here for, let's see, exactly two months! Bad blogger! Bad! No, really, this is good news as I have just been too busy to sit down and write. As someone with a chronic, and sometimes debilitating, disease, being too busy to do something is a very good sign.
So to honor Wendy's kind mention of my desire to lift up others who suffer from Meniere's disease, or any other chronic condition for that matter, through my blog, I have set aside some time to post 7 things you may not know about me and 5 deserving (IMHO) bloggers.
Seven Things You Probably Don't Know About Me:
1. I was born in Los Angeles, but grew up in Northern Idaho. As a young adult, I returned to Southern California and met my husband shortly thereafter. We have since lived in every county in So Cal from Santa Barbara on down to the Mexican Border, with a year each in San Jose and Monterey thrown in. I've lost track, but I think we have moved upwards of 20 times since meeting. And, no, we are not in the military.
2. I know a Nobel Prize winner. My husband worked with Kary Mullis, the man who developed the technique for DNA fingerprinting, at a small start-up bio tech company about 15 hears ago. I believe one of the first big cases in which this technique was used was the OJ Simpson trial. Very interesting guy! Kary, not OJ.
3. Even though I have lived within an hour's drive of either the Canadian or Mexican borders my entire life, I have never left the country.
4. Of my three children, the two youngest are twins. No, they don't run in my family, I didn't take fertility drugs, and they are not identical - one is a boy and the other is a girl. Yes, I have my hands full. No, I am not brave. And, yes, I feel like I won the lottery.
5. As a dietitian, I specialize in home nutrition support. In other words, I work with people who for one reason or another cannot swallow or digest food the normal way, so must be on home tube- or I.V. feedings. I love my job and about the only food advice I give to my patients is, when possible, to eat MORE fat and MORE calories. I am not someone you want to ask for weight loss advice!
6. I got my driver's license when I was 14-years old. That was the law in Idaho back in the day. A scary thought looking back on it.
7. I am half Norwegian, a quarter Italian, an eighth Irish, and an eighth Cherokee. I have very distinct physical and temperamental traits from each of these ethnic and racial backgrounds.
Five Deserving Bloggers:
I'm afraid I don't follow too many blogs. I've checked out a few other Meniere's-related blogs. Some, in my opinion, share unreliable and confusing information, but most just depress me and some downright frighten me. I love Wendy's blog, though, as she doesn't whine and complain, at least not nearly as much as she's entitled to. Rather, she is quick to find something positive in everything. Despite all that Wendy goes through, she remains sharp as a tack and the artwork she shares is inspiring. Anyway, here are a few blogs I like to read and why:
1. I enjoy reading Nicki's perspective at Fleetly Dreaming. Nicki and I have a lot in common, but she has muddled through Meniere's much longer than I and has managed to have children, work (until relatively recently), and take life one day at a time, living it with grace and fortitude.
2. For similar reasons, I like to read Faith, Hope, and a Fighting Spirit. Deb also has unilateral Meniere's and manages to teach, as well as coach gymnastics - of all things! I can't imagine being in a gym full of noise, watching people do flips and twirls. Sometimes when I think I should just throw in the towel and file for disability, I think of Deb and think I can handle my quiet office job a little longer. I especially appreciate her spirituality and the strength she seems to draw from it.
Now for some non-illness blogs I really enjoy reading:
3. Tiny Buddha. While I am a Christian, I find a lot of practical wisdom in Buddhism and relate very much to the notion of being mindful of the present. After all, that's all there ever really is. When I remember that, I find tremendous peace in my circumstances. One of my favorite sayings which happens to be from Buddhism is, "Suffering is the result of wanting things to be different than they are." In my mind, there are no truer words.
4. I have to be transparent here: Jennifer is a close, dear friend of mine. Her husband and mine have been the best of friends since high school. Jennifer is one of the most creative writers I know. Not that I know many. None really. But her writing style and subject matter never cease to entertain me. Jennifer has published a series of children's books, tweens really, about a London squirrel in 18th century Williamsburg. If you want to read something funny, witty, thought-provoking, and often off-the-wall, check Jen's blog out at Of Course, What Do I Know?
5. As someone who works in healthcare, as well as a person with a chronic, idiopathic, progressive condition, I find reading about healthcare from the perspective of the doctors very interesting. That's why I like to read KevinMD. The blogs are written by many different doctors and other healthcare providers and I find their honest, often fallible, admissions to be a reminder that they don't know all the answers. They are people with doubts, opinions, insights, and questions about medicine and human nature just like the rest of us. While I've seen many good points made here, I like that it reminds me that ultimately I am the one who is responsible for understanding my condition and how to treat it.
So, that's all for now. I am hoping to post a little more regularly here in the coming year, simply to share the little things that, when we are feeling well, we take for granted - but shouldn't. Though, realistically, there will probably be some bad days thrown in as that is what Meniere's disease likes to do to us: give us just enough freedom to regain some semblance of normalcy, then strip it away from us like a super-sticky Band-Aid being ripped mercilessly from a hairy piece of skin. Gotta love it.
So to honor Wendy's kind mention of my desire to lift up others who suffer from Meniere's disease, or any other chronic condition for that matter, through my blog, I have set aside some time to post 7 things you may not know about me and 5 deserving (IMHO) bloggers.
Seven Things You Probably Don't Know About Me:
1. I was born in Los Angeles, but grew up in Northern Idaho. As a young adult, I returned to Southern California and met my husband shortly thereafter. We have since lived in every county in So Cal from Santa Barbara on down to the Mexican Border, with a year each in San Jose and Monterey thrown in. I've lost track, but I think we have moved upwards of 20 times since meeting. And, no, we are not in the military.
2. I know a Nobel Prize winner. My husband worked with Kary Mullis, the man who developed the technique for DNA fingerprinting, at a small start-up bio tech company about 15 hears ago. I believe one of the first big cases in which this technique was used was the OJ Simpson trial. Very interesting guy! Kary, not OJ.
3. Even though I have lived within an hour's drive of either the Canadian or Mexican borders my entire life, I have never left the country.
4. Of my three children, the two youngest are twins. No, they don't run in my family, I didn't take fertility drugs, and they are not identical - one is a boy and the other is a girl. Yes, I have my hands full. No, I am not brave. And, yes, I feel like I won the lottery.
5. As a dietitian, I specialize in home nutrition support. In other words, I work with people who for one reason or another cannot swallow or digest food the normal way, so must be on home tube- or I.V. feedings. I love my job and about the only food advice I give to my patients is, when possible, to eat MORE fat and MORE calories. I am not someone you want to ask for weight loss advice!
6. I got my driver's license when I was 14-years old. That was the law in Idaho back in the day. A scary thought looking back on it.
7. I am half Norwegian, a quarter Italian, an eighth Irish, and an eighth Cherokee. I have very distinct physical and temperamental traits from each of these ethnic and racial backgrounds.
Five Deserving Bloggers:
I'm afraid I don't follow too many blogs. I've checked out a few other Meniere's-related blogs. Some, in my opinion, share unreliable and confusing information, but most just depress me and some downright frighten me. I love Wendy's blog, though, as she doesn't whine and complain, at least not nearly as much as she's entitled to. Rather, she is quick to find something positive in everything. Despite all that Wendy goes through, she remains sharp as a tack and the artwork she shares is inspiring. Anyway, here are a few blogs I like to read and why:
1. I enjoy reading Nicki's perspective at Fleetly Dreaming. Nicki and I have a lot in common, but she has muddled through Meniere's much longer than I and has managed to have children, work (until relatively recently), and take life one day at a time, living it with grace and fortitude.
2. For similar reasons, I like to read Faith, Hope, and a Fighting Spirit. Deb also has unilateral Meniere's and manages to teach, as well as coach gymnastics - of all things! I can't imagine being in a gym full of noise, watching people do flips and twirls. Sometimes when I think I should just throw in the towel and file for disability, I think of Deb and think I can handle my quiet office job a little longer. I especially appreciate her spirituality and the strength she seems to draw from it.
Now for some non-illness blogs I really enjoy reading:
3. Tiny Buddha. While I am a Christian, I find a lot of practical wisdom in Buddhism and relate very much to the notion of being mindful of the present. After all, that's all there ever really is. When I remember that, I find tremendous peace in my circumstances. One of my favorite sayings which happens to be from Buddhism is, "Suffering is the result of wanting things to be different than they are." In my mind, there are no truer words.
4. I have to be transparent here: Jennifer is a close, dear friend of mine. Her husband and mine have been the best of friends since high school. Jennifer is one of the most creative writers I know. Not that I know many. None really. But her writing style and subject matter never cease to entertain me. Jennifer has published a series of children's books, tweens really, about a London squirrel in 18th century Williamsburg. If you want to read something funny, witty, thought-provoking, and often off-the-wall, check Jen's blog out at Of Course, What Do I Know?
5. As someone who works in healthcare, as well as a person with a chronic, idiopathic, progressive condition, I find reading about healthcare from the perspective of the doctors very interesting. That's why I like to read KevinMD. The blogs are written by many different doctors and other healthcare providers and I find their honest, often fallible, admissions to be a reminder that they don't know all the answers. They are people with doubts, opinions, insights, and questions about medicine and human nature just like the rest of us. While I've seen many good points made here, I like that it reminds me that ultimately I am the one who is responsible for understanding my condition and how to treat it.
So, that's all for now. I am hoping to post a little more regularly here in the coming year, simply to share the little things that, when we are feeling well, we take for granted - but shouldn't. Though, realistically, there will probably be some bad days thrown in as that is what Meniere's disease likes to do to us: give us just enough freedom to regain some semblance of normalcy, then strip it away from us like a super-sticky Band-Aid being ripped mercilessly from a hairy piece of skin. Gotta love it.
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