Health Stuff… If you’ve ever gone through it you probably dread the conversations you get. So many people mean well and try to help. You get all sorts of diet, treatment suggestions, news and magazine clippings…. it does get tiresome.

I have added to my diagnosis in the last few months. I’ve been diagnosed for the last two years with Meniere’s Disease, but in the last several months have received a diagnose of “likely” seronegative rheumatoid arthritis. I had been having joint pain all over since October (which was a rough month for flu bugs at our house.) I can’t help but think that may have triggered all the problems. Right now they’re trying to regulate medicines, but I’m on the prednasone, plaquenil, a couple of allergy medicines (as that is a trigger for the Meniere’s…. (sigh) and a myriad of more conversations I can have where I get recommended foods that are antiinflammatory. I know – they are trying to help, but good grief… sometimes you just need to try one thing at a time and see what happens. (Unfortunately many of the treatments take a while to take effect, or have side effects that are scary.)

May/June was a very active spinning stretch. I had about 5 episodes through a stretch of a few weeks. It seemed like a spin every 3 days. I think the start of it was a missing of the allergy shot due to a fever and then several necessary visits into the attic to identify a leak location. So, I’ve had it all lately vertigo (although it was “mild” vertigo – I didn’t have the MAD spinning that I have experienced before…)

I can’t help but wonder if the two diseases are related for me. Both of them seem to have inflammation as a symptom and autoimmune related causes. I guess my immune system is just working too well…

Here’s a weird note. For some 20 years I’ve avoided milk like a vampire avoids the sun because of several experiences of terrible stomach upset after milk. For the last 15 years I really had wished I could drink milk and resolved to try it again when I had a free afternoon (because I new I’d feel like I had a stomach full of knives afterwards.) Well. Sunday evening I took a chance and poured a skim milk, added chocolate (great cold drink for a late spring (Hot) evening btw..) No bad effects. So, every night this week I’ve done likewise and have been on a roll energy wise (I’m thinking that may play a part in my energy of late as I’ve been on this low dose prednisone for quite a while so I doubt it’s that.) If anything my stomach/digestion seems to be perking along better than it has been over the last several months.

So…. that’s weird. I’m assuming that before maybe it was the fat (I seem to recall that it was something like 2% skim and I think what we have is …. well best described as 0% skim.) Who knows, maybe my stomache chemistry has changed?

I don’t know exactly when I first read “the spoon theory” – but WHEN I did, I knew “that’s me.” I hope it’s okay to repost this here, it was originally posted at But you don’t look Sick. Last I looked I wasn’t able find the writeup on the butyoudontlooksick.com site. (Although I did find a fun list of the top 10 worst suggestions given to someone with a chronic illness. I’m sure most everyone can relate.

The Spoon Theory
by Christine Miserandino

www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never- ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

It’s hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© 2003 by Christine Miserandino Butyoudontlooksick.com
Please note that this story is copyrighted and should not be reprinted in any form without permission from the author.

Feel free link to “The Spoon Theory” at www.butyoudontlooksick.com/the_spoon_theory – Thank you!

What a fun winter it’s been! (Slight sarcasm.) I enjoy snow and we’ve had it in spades this year in a way we haven’t seen for many years. I haven’t really been able to enjoy it much though for the joint aches and pains which seem to be worse in the cold. After my last post I had another vertigo attack on January 6th. How do I remember the date? It’s funny – I usually have a hard time remembering what I had for lunch yesterday but I can recall the dates of my attacks for quite some time. I remember it was a Wednesday and I had to cancel the afternoon portion of my schedule to get to the house and crash. Thursday was a wash as well. I started a round of prednasone that day as well. My joint aches seemed better over that following weekend. Which unfortunately has made me suspect that this may be Rheumatoid Arthritis coming on.

I finally had an appointment with the Rhuematologist almost two weeks ago now and had another round of blood drawn for yet more tests. (7 this time… I think that’s a new personal record.) They prescribed meloxicam as an anti inflammatory and I was told not to take ibuprofin while I was on it. I was also told it would take about a month for me to tell if it was working or not.

Since then, I got another allergy shot and now am feeling a bit low the tail end of this week (as usually happens after the allergy shots…) I just get so tired in the days following the shots…. it’s hard to describe, but everything seems to be fatiguing. Well, my joint aches are worse right now too. I don’t know if it’s the weather change or the shots. I’m beginning to think that the shots may correlate with more aches and pains.

I had a call from the Doctors office and called back today and while they didn’t detail the results from the blood tests they said that it was a potential connective tissue disease and they would talk about it more at my next appointment (which is in March.) So, I looked just to confirm what was a “connective tissue disease” and sure enough…. Lupus, Rheumatoid Arthritis, Sjogrens Syndrome and a couple others are in the same family of ailments.

At my appointment he had speculated a few possibilities. 1) Since it coincided with having H1N1 it could be lingering joint inflammation from that infection – it’s not unheard of for such things to last a year after the event. 2) the beginnings of Rheumatoid Arthritis or 3) Siliac Disease – which as I understand it is a severe form of Gluten Allergy. But, from the testing now it’s sounding as though we’ve found the beast behind door #2.

Yes, I’m down today. Of course, I was also down the day my first round of testing came back and everything was normal. I started questioning my sanity and if all of this pain wasn’t just my mind making it up for me. I can’t win – it sounds as though it was what I expected and I’m down. They also said the tests are not conclusive, but for that matter it could just be due to being in an early stage of things.

RIght now I’m REALLY hoping that in the next couple weeks I’ll notice an improvement with this medicine. So far it doesn’t seem to be an improvement, but even the drug information said 2-3 weeks (although we’re closing in on 2 weeks.) I guess what I’m really scared of is if it is related to the shots. I really don’t want to go back to where I was before I started the shots. With the near constant ear pressure and roaring, dizziness for weeks on end. While they certainly haven’t cured me as the January spin proved, I seem to have found an equilibrium of sorts. (I had been delayed getting a shot due to snow before the cycle that led to the last vertigo.) I seem to be better off if I go exactly every two weeks.

But then, if that’s encouraging and leading to the joint pain? Hurt all the time or give up your hearing and balance in one ear. There’s a good menu of options. It’s like the do you want it to hurt now or later commercial…… except more along the lines of do you want to ache now or be nauseous and deaf now? I’m not sure which to choose, but I’d probably have to choose deaf and nauseous. If anything else maybe that illustrates how bad these aches have been. Sometimes I want to make a request for a reward for the whereabouts of the person with a voodoo doll and pin.

I know there are a lot of people worse off and I suppose there’s a lesson in all of this, perhaps to slow down and not pour so much time into work. I wonder if the stress from that is what has brought all of this on. In spite of that, I just need a day to be down about things I suppose and think through them…. and get ready for what comes next.

Sometimes it really feels as though if you change the routine just a little bit things go spinning out of control. Side effects from one medicine, change the timing of something and everything falls to pieces. For a long time I’ve been getting an allergy shot every other week (every second Monday.) I get a bit of ear pressure and roaring for a couple days. I feel like I’ve run a marathon and am worn out for a few days, but the spinning usually doesn’t hit. Well… we had a big snowstorm and I missed my usual time and made it Wednesday instead. It (as expected) hit me harder than usual. I didn’t make it to full vertigo but had a day or two of dizziness (moderate to heavy). I consider the dizziness to be a stage below the vertigo and it hit New Years day. (No alcoholic drinking was going on either.)

But currently that little bit of dizziness is the least of my concerns.

Back in October I had something that I thought might be H1N1. It was upper respiratory and I missed about 4 days or so of work. Then about two weeks later I got what we know was H1N1. That stuck around a bit longer but was just as fun (!) Around that time I had started having some pains in my left hand. Almost like electric shock running out my fingers. But by November both hands were doing it and there were strange achy joints everywhere as well. I mentioned the sharp pains to the doctor at my visit in mid October and he screened for a couple things and said it should get better soon, it may be slow healing but it should be improving.

Well, it improved a slight bit, but it seemed everything was hurting by Thanksgiving. I had a rough week prior trying to get all my work done before Thanksgiving and didn’t get much sleep and chalked it up to fatigue, but by the time the Sunday after Thanksgiving came around I really didn’t feel like charging into work. So, I somewhat glided through the next couple weeks before Christmas putting off until January what I possibly could hoping things got better.

My joints ache. I’m not sure yet if it coincides with my allergy shots (or the Meniere’s symptoms that fluctuate after the shots.) Given that Meniere’s may be autoimmune and Rheumatoid arthritis is as well I’m suspecting there may be a link. Also my Aunt had Rheumatoid arthritis and I understand there is a potential family history connection for that.

I’ve been to a doctor again and he ordered a long list of blood tests including 2 rheumatoid related, thyroid, folate and b12 level tests. But as you can imagine it feels as though things are spinning out of control again. I had been taking B12 for a numb spot on my leg which I since discontinued after determining I started the last bottle of b12 around the time this all started. I’ve had to discontinue the benadryl which I had been taking to try to keep the ear pressure at bay. (I had been taking 50mg each night and 25 or 50mg during the day depending on symptoms.) This has been the first shot cycle for me to coast without that or my allegra. (Although when I’ve had a sudden sneezing fit I broke down and took a 25mg benadryl. That happened twice in the last couple weeks.)

I don’t know quite what to do as I await the results of testing. I’ve already been referred to a rheumatologist, but am told it may be 6-8 weeks before I hear something there.

In searching around the Meniere’s forums I see others asking about connection between RA and allergy shots (which I find interesting) and many other chats about correlation between RA symptoms and allergies acting up. It makes sense as traditionally allergies cause inflammation in the sinus passages why not elsewhere????

Don’t know what to think really, just tired of this persistent aching and sudden pains out of nowhere. It’s not that it hurts so much all the time it’s just that it’s so persistent, unrelenting aching. Sometimes it’s punctuated with a sharper pain in a random joint for what seems no good reason.

(sigh….) I don’t know what to hope for. I don’t know whether to hope they say that I likely have Rheumatoid arthritis or that they don’t see anything that would indicate a problem. Sometimes you just feel like you’re going over the edge and if there’s no tangible proof of something wrong well…. maybe I’m losing my mind. Could my mind be making up all this pain? Anyway, I should hear something as early as tomorrow. Tomorrow is also the time to try and dive back in to work. I’ve tried to get some things ready over the last few days because I punted an awful lot of stuff to January. It’s set to be some month trying to get it all done. I just wonder at what point I have to just quit pushing.

As it is though, we don’t make enough to keep all these doctors employed….. Now I’m going to be adding another one to my “staff”. (sigh).

Here’s hoping things are going better for the readers out there in the ether.

I’m really glad to see October go. I alternated in the month of October between working way to much and then spending the next week sick, then working way to much and the next week sick. The first week I missed I thought was due to a mild case of H1N1, the second week I missed WAS a case of H1N1 (H1N1 log if you’re interested. Anyway, the really unfortunate thing was that I had decided to try and wait three weeks between my allergy shots again. So…. after the three week gap I got a shot and the next week I had all sorts of symptoms (along with H1N1). I had started on prednisone two days before I came down with a fever, that day I had spinning, and kept the stuffy ear and tinnitus for a bit better than a full week with it culminating in not one but two spins towards the end as the flu was going on it’s merry way.

So, in other news…. I’m still trying to decide if I want to add in mold allergy for my shots. When I was first diagnosed with allergies mold and dust mites were the culprits and apparently they set me up for shots for the dust mites. I’ve procrastinated on deciding for a while and thought I’d try pushing things back a week with the shots to see if that would work. (Nevermind..)

Sometimes Health can be such a challenging thing to manage! Anyway, I think I’m mostly over the flu at this point and my tiredness is back down to the general cyclical fatigue that I get due to the allergy shots/meniere’s symptoms and the benadryl which I’m afraid to miss taking for the symptoms. To roll the clock back to the beginning of my bad week with symptoms that was the only stretch for a while I haven’t taken the benedryl regularly as I was afraid of mixing it with the other cold/flu cough medicines that I was taking. I suspect some people may wonder if I have a non-prescription drug addiction in the benadryl, but really it does seem that two at bedtime and then one or two during the day depending on the amount of ear pressure really has seemed to keep things at bay. When I finally resumed the benadryl after the flu was subsiding it was only a day or two before the symptoms subsided.

So…. I am glad to see October go. It was NOT a fun month and at this point in time I’m looking forward to somewhat of a break in the coming month or two. I am greatly looking forward to some rest around Thanksgiving and then Christmas. Hopefully I will have caught the last bug for this calendar year!

First off, I think I’ve finally managed to learn how to spell prednisone! I was just about to call this prednasone and meniere’s disease… but I think I’ve finally got it straight. (Although my spell checker thinks it’s wrong either way. I guess I don’t have medicines in my spell checker?)

Anyway… I have been on prednisone again this week. This is, I think the 4th time I’ve had a short run of prednisone. It’s been prescribed with the idea that my symptoms are a result of inflammation. (I see a lot of references to prednisone being prescribed for auto-immune type issues.) Anyway, it’s been some week! Saturday night I had a lousy nights sleep. I was spinning in my dreams and woozy Sunday morning. Got the prescription filled and was starting to get things done Sunday evening (I think I worked on my antivirus removal tools page at hubpages that night.) I was feeling better though…. and then I didn’t sleep much that night.

Then Tuesday was the first day of school for our oldest and I didn’t sleep much going into Tuesday, then ditto Wednesday and Thursday nights as well. I’ve probably had about 2-4 hours sleep per night. It’s so frustrating I’ve gone to bed and just laid there. I close my eyes and just lay there, occasionally I think I drift off to sleep, but usually I wind up getting uncomfortable, rotating, looking at the clock, fidgiting. Get up and work on the computer because another thought came to mind. Go sit on the couch in front of the tv and try to be a zombie…. well… frankly trying to be a zombie isn’t necessary. This is because I’m still taking the benadryl as well. So…. I’ve got drowsiness from that, insomnia from the prednisone. But, hey, my ears aren’t stuffed up and I’m not spinning. So, it is a plus(!) I feel like I’ve put on 20 pounds in the meantime. (Prednisone always makes me want to eat every 2 hours I think..)

I feel as though most of the week I’ve been oscillating between my usual personality + high caffeine, some crazy lunatic that flies off the handle at little things and can make anything into a crisis and someone on dope in la-la land…. (I was translating beatles songs into spanish on the way home yesterday…. “in el pueblo en que nací vivó un hombre que zarpó el mar….” is it really submarino amarillo? oh nevermind….)

Well, I have got quite a few things done, but I’m really in need of some good sleep I think to get back to some sort of balance. (Temperament wise, the vestibular balance has really been better.) Do they sell straight jackets on ebay?

It seems like the last round of prednisone I was prescribed may have been a lower dosage to start out with (like 5 pills of 5mg on day one, stepping down to 4, 5mg pills, etc.) This time around it was 2, 20mg pills for the first three days and 1 for the last 3. It has seemed more effective this way, but like I say the side effects are tiring.

It has at least kept me from a really bad spin. Sunday morning was not fun, but I’ve had much worse. It isn’t often that “the vortex” invades my dreams like that but it’s not a good way to start the day.

I don’t know how else to put it, but the benedryl fog. The last month or 2 benedryl has helped to keep me from experiencing the worse stuffiness/tinnitus/spinning, but it’s making me feel like a zombie. I take a full dosage in the evening around bed time, but several days I have also had to take a half dose during the day. I’ve been taking one in the morning and if necessary (more crackling/stuffiness) then one in the late afternoon. That along with astelin and I feel like I’m just a fraction of myself. I don’t have energy or spark to get out and do anything. I spin my wheels at the work that I start, I feel like I’m thinking in oatmeal or molasses. So, today the question was what else can I try to keep the stuffy head stuffy ear/ear pressure away while I’m continuing with the allergy shots.

So, I have a few fresh prescriptions to try. One for allegra which I had tried some years back, although since the shots it seems that the allergy medicines have a better chance of doing something. Also, I have a sample and prescription for veramyst which is a new one for me. I really hope that between these I’ll be able to taper off the benedryl and not get back to where I was late May/early June. This seems to be an unbearable equilibrium I’m at these days. Either take medicine and be doped up or don’t take the medicine and spin, have vertigo, lose hearing. Gee…. isn’t there a third choice?

Anyway, we also talked about the possibility of adding aspergillus (sp?) to the shot routine which is a possibility if these other items don’t make a difference in the coming week/weeks.

It’s kind of funny, he noted that I had a bit of congestion as he checked out my nose, (I had taken a full benedryl last night at bedtime and a half dose this morning along with astelin at bedtime and this morning.) I told him that really this was pretty good as far as things went and was worlds better than 2 or 3 years ago.

This site is really coming in handy for me though as it gives me a good way to go back and review my case history before I go to the doctor. Everything is running together for me over the last few years. I have a hard time remembering when it was I started with which treatment or when I last had a more serious attack, etc. The paper journal that I was keeping I haven’t kept up with in some time so most of my events get recorded up here.

Well, time to press on and attempt to get some work in this afternoon. It’s really hard though the benedryl took my get up and went!

On the plus side I have had some promising news in other areas today so, maybe I can use that to psyche myself up to get some things done!

I think I mentioned that since that last round of attacks I had been perhaps a bit too eager to take my allergy medicines to try to fend off the next round of attacks. Well, after the really big slip up on a Thursday of Zyrtec the night before – 2 benedryl and then alprazolam (xanax)…. I had decided to not take zyrtec at all since 1) it was 24 hours and I had a tendency to forget the next day that I had taken it. 2) It really hasn’t been as effective as the benedryl. So…. I had been taking two benedryl at night (the full dosage and one in the mornings, one in the late afternoon to fend off the beginnings of stuffy ear. To put it simply the last few weeks I’ve felt fairly lousy. I seem to have no energy, no get up and go (all got up and went…) Well, Sunday evening it was almost a week since my last shot so I thought it might be time to lay off the benedryl and I didn’t take it before bed.

When I got up, my ear was NOT stopped up so, I didn’t take it that morning either. Monday was the best day I’ve had in a month. I had energy, some real enthusiasm, didn’t feel like Eeyore all day, got in my ~2 mile walk. I was jazzed! I didn’t take any benedryl Monday night and then woke up Tuesday morning with a stuffy ear starting. So, I took the benedryl first thing (1) and wihtin a little while I was back in the same fog. No pep, no energy, no enthusiasm for anything. I spun wheels half the morning. After lunch I actually took a nap before having to go to a late afternoon appointment. By about 9 in the evening I was finally feeling a bit better, maybe not jazzed, but at least not so low energy that getting up seems like too much trouble. (By the way, my ear cleared up sometime during the day, another sign that at least for me these symptoms are allergy related.)

I took 2 benedryl that night out of fear that I would wake up with stuffy ear starting. So, I slept late today (Wednesday) and had a very slow start this morning – not much energy. I didn’t take any benedryl this morning though and by afternoon I have been feeling back again! Now it’s early evening (a bit after 8 ) and I’m feeling pretty good. Fair amount of energy and seem to want to tackle a half dozen new projects.

Through all of this my head still feels a bit scrambled still from the last round of attacks, it’s like I’ve got to relearn to process the movements of my head/body each time I go through that. It seems like a slow gradual return to feeling as though I am actually “back in my own head”.

But that’s the dilemma it seems these days. I either take benedryl to ward off the stuffy ear and go through everything like a zombie at 50% of my usual intensity or don’t take it at all and run the risk of a spin in several days time as the symptoms progress. (Not to mention the funk you go into when your hearing closes down for several days on end.) I may be finding a bit of a balance by taking the benedryl just at night. I’ll have to experiment more I guess and see if I can cut it to just one at night and still manage to ward off the stuffy ear which is usually the start of the next attack.

On top of all of that, I’m also somewhat jazzed to actually find that there’s someone still in me somewhere that has energy and enthusiasm to do things….. the last few weeks I wondered where that person had gone. I actually have felt alive again 2 of the last three days!

It’s frustrating to find the words to describe what I feel lake in the days and weeks after the last attacks. I had two attacks in one week, which is a first… that was, I think, three weeks ago… I say, I think because it’s all running together. I slept the better part of the weekend following those episodes. I’ve been tired and a little lightheaded most every day since. I’ve also been on the watch for any sign that the scales may be tipping towards another episode and trying to head it off if at all possible. Which led to a big mistake last Thursday…

I have been taking zyrtec once aday to try to keep the allergy symptoms at bay. As I’ve detailed, allergies seem to be the trigger that sets things spinning. If I let my allergy symptoms rage for too long, then I get the pressure in the ear that leads down to the spiral vortex… Anyway, I had asked my wife to pick up more benedryl while she was out as I’ve been using the quick dissolve tabs on demand when I’ve had an allergic reaction to something. (My shots are still progressing and in some ways it’s progress that I actually can tell when I have a reaction to something specific as opposed to being somewhat constantly “gooped up” in the sinus passages.) Anyway, she had got a container of caplets (which is much better than the quick dissolve – since there are only 10 of those strips per package at a decent price)… Reading on the bottle I saw that it was possible to take 50mg for a strong reaction which was twice what I had been getting in the dissolve strips.

Well, I had forgotten about the 24 hour zyrtec the night before. I had just had a pretty intense sneezing/allergic fit over something not long before she arrived back with them and, well I decided I’d take the 50mg dosage. I had already been a bit more muddled in the head and was feeling a bit less steady than before the allergic reaction and thought that might knock the symptoms flat. I proceeded to eat lunch and an hour later was feeling very strange.

Unfortunately, I didn’t think about having taken the medicine…. and has been typical when I think I’m getting closer to a spin I’ll take the alprazolam (xanax) I was prescribed to make the attack less severe. 5 minutes after I took it I realized that I had already taken the benedryl and then recalled the zyrtec…..

Well, I had to cancel everything for the afternoon and I slept for 4 hours. I think I’m only running on 60% of my brainpower still after the last round of attacks and I’ll chalk this experience up to that. If I could count up how much sleep I’ve had in the last 3 weeks… I’d bet my average per night is 2-4 hours more than “usual”.

I started a new vial of the allergy serum Monday and as you might predict by last night (Tuesday) my ear was starting to stuff up. I took a 25mg benedryl when I got home and then 50mg around midnight (I’ve not been taking the zyrtec since Thursday – it only seemed to be marginally beneficial.) I slept fairly well and woke up feeling somewhat better than I have in a bit and the pressure/stuffiness in my ear had gone away.

Since it was a new vial, they cut the dosage back a bit and my next visit I’ll get a full shot (I may make it next Monday.) I feel like this last attack has made me a bit paranoid and “trigger happy” at taking things to try and ward off the next one though.

I should also mention that the weeks leading up to the last attacks (or maybe it was just one that “crested” twice…) I was walking about 2 miles a day 4 days a week and in the three weeks since I just haven’t felt the motivation to be able to do that. I forced myself one day into about a 1 mile walk and felt lousy afterwards. Maybe yet this week I can start forcing myself back into that routine so I can lose the weight I gained on the prednisone… (can’t win…)

(Updated June 5th – see the bottom of the post.)

I see that the last of my scheduled posts about my initial diagnosis have now finished posting. That February trip I was talking about in the last post that I had my first need to get the prednisone filled was February/March 2008 and really the rest of 2008 was on the whole MUCH better than 2007 had been. The symptoms still acted up from time to time, a little roaring/stuffiness in the ear occasionally. Nothing really severe enough the rest of 2008 to require prednisone, but several days that tipped the spins enough to require the xanax to take the edge off. I’ve been getting the allergy shot every other week (Still – backing off to less frequently caused the symptoms to be a bit more active). I’ve even taken to using a rainbow (water based) vacuum at the house in the hopes that the dust will not be blown back out into the room in vacuuming. (The water is essentially the “bag” of the vacuum with the rainbows. The water get’s changed out after each vacuum and we dry it outside so there’s little chance of it becoming a mold risk for us. And no, the carpet doesn’t get wet….)

This February/March I had a similar spell to the one last February. It wasn’t as sudden, my ear was pressurized and roaring for a few days. (I was about 4 days late getting my allergy shot.) Then the moderate to heavy dizzies set in. (Again not full blown vertigo.) At that point I went for a refill on the prednisone. Which did seem to knock the symptoms flat (as well as the fatigue that usually follows. Since then I’ve had bronchitis (I think caused from dust from working on a computer hardware replacement.) I’ve had more colds and other bugs the last 6 months than I ever remember getting. I’m starting to think my immune system is just too busy trying to overcome the allergies with my every other week shot routine.

Well, fast forward to Memorial day weekend, I had been on an every other Monday routine at the allergy shot clinic and of course the “on” Monday fell on Memorial day, they were closed. I had already a bit of light roaring and pressure in the right ear the day or two leading up to it (which is a bit unusual.) (I suspect all the rain we had in May (set a record for May of 9+ inches at the Asheville airport!) may have had something to do with it, better conditions for dust mites and molds….) Anyway, I got my shot on Tuesday and things went downhill from there. By the following Sunday it was a deafening roar, sounds were distorted and made my eyes water, I was a little tipsy walking around and really should have know that “the beast” was approaching. Late Monday afternoon (yesterday) the roaring went away and I came….. “unstuck” you might say…. my balance slipped anchor and I was adrift. bobbing around, I took the aprazolam (xanax) after dinner, but was still spiraling worse. In fact, this one I think I’ll call a mild vertigo experience. There was mild rotation, it was more severe than I remember the other recent attacks being, but full short of the rapid spiraling I’ve had before (the spiraling vortex of death….)

After dinner I went out to make a bit of a walk (stagger) around the yard. I’ve used a walking stick for years. We live in the mountains and a stick can be handy for snakes, spider webs, roaming dogs, but of course, recently it’s had a more immediate purpose. Well, I only fell once walking around the yard. (I think that’s when I realized how bad this spell was, I had been in a bit of denial up until then. I was walking up the hill in front of our house and hear something down the road, turned my head to look and the next thing I knew I was laying on the hill in front of our house. (Self, meet ground…. ground, meet myself…) (sigh).

Well, today I called in for another prednisone prescription and have already started it (I should have called yesterday while the roaring was still there, I really should have seen it coming. I’ve been through this enough times that it really should have been expected. Of course, I was hoping that maybe this time would be different….)

Anyway, I’ve felt lousy today. I’m absolutely wiped out fatigued I’ve slept off and on most of the day, had to call and cancel/reschedule my afternoon appointments. I spend most of my days working at the computer, even when I’m sick (cold/stomach bug/bronchitis), but not for most of today.

Not to self…. learn how to spell prednisone or prednasone or whatever it’s called.

Update 6-3-09 – Balance seems to be better this morning, unfortunately I can tell there’s a drop in right ear hearing. The prednisone seems to be doing something though as I’m starting to experience the usual side effects (I feel like I gain 10 pounds everytime I’m on the stuff…)

Update 6-5-09 – Sure enough that drop in right ear hearing and the roaring returned and last night (the 4th) had another culmination of the attack with a slightly more severe spell than earlier in the week. Was fine (tired/slightly depressed over the roaring in my ear) until the last part of the drive home. By the time I parked in the drive my head was still moving…. waited and tried getting out of the car, fell…. laid on the ground for a while, tried getting up, couldn’t… waited a bit longer and finally was able to get up. Later in the evening started rotational spinning and I think I fought it off (I think). I’m at least going to believe I fought it off…. if only once. Slept 10+ hours…. Canceled everything scheduled for today – feel like I’ve run a marathon, moving slow as I’m still relying heavily on what I see for balance. Headache/fatigue seem to follow these attacks for me. At least I’m able to work/read at the computer today (I couldn’t do much last night it was too hard to focus on (and move my eyes to follow) the words for a while.

I haven’t had two attacks in a week before. My hearing seems somewhat back to normal today. Hopefully that will continue because as long as the pressure and roaring is at bay, then hopefully the rest of the symptoms will be too. (It seems as though the dizziness/vertigo always seem to come as some sort of culmination of several days of pressure/roaring in the ears.)