What – Vitamin d deficiency and rheumatoid arthritis – isn’t this a Meniere’s disease site… Okay, so at this point you know I’ve diverged from talking about Meniere’s disease as much and now focusing on Rheumatoid arthritis. why? Well, frankly it’s been more of an issue for me the last year or so than the Meniere’s has. I have been pursuing Rheumatoligist appointments in an effort to get part of my life back just like I had been pursing allergy and ent appointments…

Vitamin D Deficiency and Rheumatoid Arthritis

Well, for background I’ve taken traditional approaches to Rheumatoid Arthritis treatment. That is to say, prednasone, plaquenil, meloxicam, methotrexate. Really those seem to not have made much difference over the last two years. I was afraid that I was heading towards being in that statistical area of people who have to quit work within 5 years after diagnosis and try to find a way to live on 800-1200 a month disability.

At 38 years old with a wife and two young children that really is not an option. (As if it is for anyone…) So I’ve been desperately looking for solutions. The most promising so far is antibiotic treatments. Pioneered by Dr. Brown and now the standard bearer is a Dr. Mercola. Basically the premise is (as I mentioned in the last post) that a bacteria, mycoplasma is responsible. This makes sense to me since my initial symptoms started after an infection that resembled the flu. For almost 3 months now I have been on antibiotics and things seem to be going well.

However as the weather has turned I’ve been waiting to see how my symptoms go. They tend to be worse over the winter and why is a mystery but my rheumatologist seems to recognize this as a fact that so many people see worse symptoms in the winter months. Why?

I’ve spent a lot of time musing on this. The last week I’ve noticed my symptoms were worse. This week was Thanksgiving and it was so much better a Thanksgiving than the one two years ago. I felt ancient then. This was so much better, but my symptoms had started returning enough to make me aware that I was not cured yet.

The day after Thanksgiving we had our first fully sunny day in a short while and it dawned on me one potential reason for the seasonal variation in symptoms. I’ve given a lot of thought and there are few reasons why winter should make much of a difference for RA. I mean, let’s face it, most of us have central air or at least heating enough that we are in 65-75 degrees through the winter (same as summer). Sometimes the humidity is a bit lower indoors in the winter, but that shouldn’t be a problem. There must be something else. I can’t imagine that the air pressure is that much different in winter than summer.

The sun…. I remember a year or year and a half ago. It was winter and I felt awful. Everything hurt. I desperately wanted to get out into the sun even though it was 50-60 degrees out. Maybe there is something to that.

Some quick research on vitamin D is that there does seem to be some link between vitamin d deficiency and rheumatoid arthritis. Hm…. research was done showing that people in the northeast were more likely to show symptoms of Rheumatoid arthritis. Promising… Maybe there is a link.

I’ve read more and more and am putting it to the ultimate test. I did spend a couple days out in the sun in short pants. Froze too! But I’m not taking the chance that the suns angle is too low for vitamin d production. (Vitamin D is produced when UV-b hits the body.) In just 10-20 minutes exposure you can generate around 10000 units of vitamin d-3. I looked through my supplements and discovered that I’m getting around 400 IUs of vitamin d from my supplements. The RDA is around 600 it looks like and so I’ve gone out on a limb.

I’m taking supplements of Vitamin d-3 now. 10,000 IUs a day. I’ve taken them for 2 days now and am curious to see if my aches may improve even more. From what I’ve been able to read about vitamin d deficiency. The symptoms can develop gradually over time. (So it may take years of being vitamin d deficient before you will see symptoms.)

By the way it looks like toxicity to vitamin d-3 is in the range of above 40,000 ius per day. Vitamin D generation in the body is not something that would contribute to toxic levels (sun exposure for vitamin d self regulates.)

I’m also now wondering if vitamin d deficiency my not also have a link with meniere’s disease as well as with the Rheumatoid Arthritis. Wouldn’t that be a fantastic connection! I am reading that there are speculations of several auto immune diseases that are exacerbated by or brought on by vitamin d deficiency. I’ll check back in on my experiences over the next couple months and let you know how I fare through the winter!

The last two years have been particularly hard. It was October 2009 when I had a sudden onset of some sort of infection. I thought it was the swine flu and I would have continued to think so unless our oldest son hadn’t brought home what was tested and verified as swine flu which then spread to his younger brother, his mother and finally to me. So, I had something that wasn’t the swine flu early in October and lingering achiness and stiffness in the joints.

By Thanksgiving I felt like a very old man… every move was painful, standing or sitting was uncomfortable.

By December I managed to get some testing which didn’t really turn up much and then a referral to a Rheumatologist. I was throwing down tylenol and advil daily.

The tests that they did all were inconclusive, but they called it seronegatoive Rheumatoid Arthritis (meaning that the testing does not yet show it, but everything else does.) They put me on prednisone and meloxicam and sent me on my. Came back in a few months not much better and plaquenil was added to the mix with instructions to get my eyes checked. (Plaquenil can damage the eyes ability to see red over time.)

So by September of 2010 I was doing a bit better. Enough to occasionally kick the ball outside with my kids. October set in and the window of opportunity closed. I was back into the bad aches and pains. By midwinter they wanted to add methotrexate to my medication list. I remember that first dose of methotrexate I felt like I had an appointment with the gallows. I didn’t know what it would do to me. I researched and read a lot of users experiences with it and decided to take it in the evening on Saturday so I could sleep through most of the side effects.

It leaves me feeling clobbered on Sunday though.

At first it seemed to be helping some and then over time not as much and they had to raise the dosage.

Then late this spring (2011) I had some sort of upper respiratory infection and went to get an antibiotic prescription. (Zpac). For the several days I was on that my aches and pains eased to a point where I felt like the sun had come out and I was able to do things again. Unfortunately it was a short window. Because when I went off the antibiotic things returned to “normal.”

I had been researching antibiotics for RA for quite some time. Dr. Browns research seems promising and I must admit that I had ulterior motives when I went to the Dr.’s office to see if I could get antibiotics for my upper respiratory infection.

So… I logged everything over the course of the ZPac and on my next RA appointment presented the details and asked my Rheumatologist if I could try low dose antibiotics. He agreed and took a couple days to review the dosages.

Doxycycline was prescribed (from what I read – it’s not as effective at permeating the cells as minocin, but it is cheaper.) I have had a constant improvement with it. It’s now past October again and I must admit this last cold spell has had more aches and pains than 1-2 months ago, but I’m doing much better than 3-5 months ago!

The theory behind the antibiotic therapy is that a small bacteria family known as mycoplasma may be to blame for a great number of autoimmune diseases. There are lots of different varieties of the bug and it is unique in that it is the smallest known form of bacteria. They lack a cell wall which enables them to infiltrate the cells of a host better. In many ways then it would make sense if a species of mycoplasma preferred synovial fluid, or connective tissues to live in, that it would migrate there after initial infection and the immune system would keep hammering at the cells trying to get the invaders out.

I’ll check back in over time and let you know if this continues helping!

It’s been a long time since I’ve posted here or on my other sites. This last year has been rough, but not for Meniere’s Disease. My Meniere’s symptoms have been mostly under control, with occasional flares. Most of my challenge the last year and a half has been Rheumatoid Arthritis. Truth be told, the last year has been pretty rough. Medicines have not seemed to be working since last fall. I have just had the best two weeks since last fall though and am starting to feel like I’m coming back. I plan to write all about it here (as I don’t intend to start an RA blog…. may change my mind on that though…)

I can’t say when I’ll get things written up here, but am eager to write.

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!