Sunday, July 18, 2010

Perplexed...and yet, Still Bitchy

I'm too smart for my own good. I don't mean as in I've cured RA for good brilliance (don't we wish). I'm not even smart in a way like my hubby whom despite also having 3 degrees, can get under the house with the best of them and figure out why our washing machine isn't working.

No, I'm smart in a really annoying way. I also hold two degrees; I'm no slouch, but I have this irksome observational intelligence. I notice details about people, places, situations, rooms, outfits, body language. You name it, I notice it...And then somehow, I file it in a part of my brain for future reference in some (apparently) neverending storehouse of details fileboxes.

So of course; what ends up happening are one of two things: Either I see things coming for miles bofore anyone else...which annoys me and them. Me, because it takes forever to get validation, and them b/c I'm always right. Or, the second kind...and this is the one that keeps me awake at night, requires an ambien script, and still wakes me up 2 hours later anyway. I notice things, things that are too "non-random" to be coincidental, but I DON'T know what they mean. Obviously, I'm not meant to. I mean, I've lived long enough to realize God reveals everything in time. Yet, why does he let me see these connections if he's going to make me wait so long to find out what they mean.

And here's a big example of what I mean. I've mentioned it to a couple of bloggers, and their answer was that maybe we copy each other...but I really don't think it is that. I mean, RA behaves differently, for each one of us. And yet...there are certain periods where I swear my RA is acting like a lot of yours. And it seems to be the same 10 core people. For instance, I just went through the best three weeks I've had in two years, and now I'm crashing hard. I could tell without it having to be confirmed that many of you were having more good days...because we were all too quiet.

And I remember a time when (even though I don't struggle with my hands so much as most; mine is more in the larger joints) I was having a really hard month with my hands. Three bloggers posted that same month, one even featured new gloves. RA Guy is one and Remicade Dream, and the three of us are roughly the same age. There are more, but I guess I just wanted to raise this awareness for those of you that haven't already seen it too.

But I swear to you, I stay up night TRYING to figure out, "Why now? What's different? What did we do/didn't do that we did last month?"

So this is what I KNOW. This RA thing has a pattern. It may be slightly different in all of us, but there ARE remit/pain cycles that are consistent across the board. If I can see it from my little house in the sticks, where are the scientists, the Einsteins, the brainiacs? They could use an Oprah a-ha moment if you ask me.

I do know some docs see it. I believe that is why many are starting to read our blogs. It may have started as a conversation with one dr., and then another. And then more patients reported something. Each time we think we're on to something, its only a piece. But as random as RA seems, there are times its not. So there is a bigger picture we're all overlooking.

And as God as my witness, if someone could figure it out, I'd empty this entire damn detail file in my brain, including the HORRID picture of my newest sister-in-law wearing a TIARA at her wedding. Really, Sweetie? A tiara? In your 30's? Damn details.

22 comments:

  1. Well lets see, if weather travels across the US from west to east then it follows that similar RA folks will be having RA pain at near the same time. Or following another's. Following the weather maybe? Probably. Doesn't answer why your hands are hurting now when they didn't before...Just RA's way of saying Gotcha! Wish it could be a simple as we hoped it would be.

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  2. I am very surprised this was not written at 3 am. This is what I am usually thinking, while reading the blogs, in an ambien haze, wide awake at 3 o'clock in morning. Hand pain is the worst and for me one of the hardest to hide. Yesterday I tried to "play" with my kids slip n slides and RA do not mix I am paying for it today. I had a doctor tell to "apply myself" once well you shouldn't feel so damn bad the next day wen you do. It is possible we feel the same things so we can have someone to relate to, Only positive way to look at it.

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  3. Thanks for your comments guys - but I KNOW there is more to it than the weather. Trust me. Its sorta the way I predict couples that will get married or divorced, or the plots of all movies. There is SOMETHING else tying us together...too many coincidences. But I'm glad to hear I'm not the only one up at 3am thinking about it!!!

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  4. OoOoOhh - spooky. I have been having a good few weeks. And I'm always quiet during that time because I almost feel guilty about it. Can I tell you a secret? I went running! Like 5 times in the last month! Sure, it was only for a few minutes at a time, but still. RUNNING!!! That has been one of the hardest things for me to give up... and I got a glimpse that maybe I don't have to give it up completely... Of course, then the other day I was back to limping up the stairs. I blamed that on the weather... but perhaps it's not just that. Very interesting... I don't know what it all means, but like you, I don't much believe in such coincidence.
    (As for being an observer/predictor, I am a bit that way myself. My pregnancy-radar is legendary! LOL)

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  5. I am a firm believer that the weather is a huge factor.....and it isn't so much "the weather" as the barometer and the pressures. I think it is a magic combination of that plus stress and food. I try to eat everything with no preservatives, low fat, lots of yogurt and fresh fruits and I have been holding my own for two years with out medication. Over the last 35 years I have been on everything from placquenil to humira and I mean everything.....gold, methotrexate, enbrel, arava, and the humira put me in the hospital twice with sepsis. I am lucky to be here today, so I finally said no more! I take fish oil and vitamins and an occasional ibuprofen and muscle relaxer. Rest is a huge issue also. As far as them findng a cure....I think it is all political. There are so many fat cats involved, its all about the money !

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  6. Anon has it... the barometric pressure has a good deal to do with many ailments. For me personally, I suffer most with humidity. Also, with change of season. That is brutal for me. I've been in a very long flare this time and even my doctor is scratching his head as to where to go next in treatment. It's frustrating and exhausting at the same time. I too lie awake many a night wondering what have done different to precipatate this 17 week flare. Did I do too much, too little, not the right things? I don't know. But the nights I've lost to the meanderings of my mind have astounded me. I take my plaquenil, arava, muscle relaxer and pain med plus a boat load of neccessary vitamins for deficiencies and still, it helps little. I'm about ready to abandon the dmards as the damage they can cause is starting to concern me with the little help I'm receiving from them.

    Very good topic tonight.
    Tazzy

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  7. Girl, I am totally down with the "seeing things" feeling you refer to. But I have to tell you that I have been in the worst shape of my life in terms of RA in the last few weeks and didn't blog because I sort of went into a hole of sorts. I am a mess and can't wait to give the antibiotics a whirl. But I did notice that many didn't blog all at about the same time recently. Anonymous nailed it for me though. Since have been med free for two years, I clearly see the things that impact my condition--particularly since our bodies have become so sensitive due to RA flucking with them--and the things she mentions (food, stress) are big. But weather is huge for me. Not fond of the Texas skies getting dark and rumbly. It always brings pain with it. Love that you are trying to bring it all together! There are definitely connections. One day...

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  8. I'm probably about the least "woo-woo" person around, SB, but I'm with you on this one even if I can't put a finger on why. Logic (and as a Scorpio with a good dose of genetic Scandinavian seriousness and practicality) tells me that our collective lack (or overload) of RA symptoms really are related to the season and barometric pressure changes. For those who are feeling better right now, it could also be the summer light, which lifts the spirits of some people. Those of us who are feeling worse might be affected by the damned heat and humidity that comes with that sunshiny weather.

    But that all seems way too simplistic, doesn't it.

    There IS more. I feel that instinctively. But I have no idea what that "more" is. Here's what I'm glad for, though: That we, as a "community" can talk to each other, can be honest about how we're feeling without embarrassment or feeling like a bore or a hypochondriac, and that we can offer each other support, compassion and empathy without judgement or criticism. Personally, no matter how I'm feeling RA-wise, getting feedback from others like me helps me to feel better.

    That's one thing I'm very sure of. We're doing each other a lot of good. Thanks for bringing this strange synchronicity up for discussion. It's fascinating. We may never get it figured out, but trying is therapeutic and soul-lightening all by itself.

    Linking up with a smile,
    Wren

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  9. I think you are too hard on yourself. The way is write is obvious as to how smart you are. Yes, RA sometimes is stronger and smarter than us so cut yourself some slack. Being observant and hopeful are good things. I think that illness makes us see things clearer so you are right God does work things out in the end.

    In my research, I read that some people (this where genetics comes into play) have certain antinuclear antibodies and some people have a Rheumatoid factor. These do not necessarily cause RA to develop; they just make a person more susceptible to triggers to cause the disease to develop. So, for those of in our mid-thirties dealing with similar stressful and environmental triggers, it is not unusual that we have similar symptoms. I don’t really pay much attention to whose RA is worse than mine, but I understand that we are in the same ballpark. On the other hand, pain is different for each of us. My pain is not like your pain nor is your pain like anyone else.

    My hands, too, are struggling this month. It feels like they are so weak, swelled and ache so much. Perhaps it is the humidity, stress, and any number of environmental triggers. I have also had two major flares, one at the beginning of the month which lasted a week, and one right now that is going on almost four days now. So you are absolutely right about the pattern and you are absolutely smart there because I am not sure that a lot of people, including medical professionals (which by the way have no clue what this disease is like), even consider that. I think that this type of research in terms of patterns and symptoms is more important than severity and it opens up the door for better treatment options. (You should lead that research team. :) )

    And you are absolutely right 30+ wearing a tiara – how gross. It is like wearing white to your fourth wedding (a cousin of mine).

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  10. The only pattern I see right now is, every time a storm is coming, I am a useless piece of junk. Might as well use me as a coat rack. Of course this summer has been nothing but rain in the upper midwest! Great for making a garden grow, and aha, makes the joints grow too.

    I am so glad you post the way you do. I have people I thought were close to me that whenever I say RA or my joints, the subject is always changed, so thank you for saying everything I am thinking. Now if only I could quit saying it out loud. Oh well, I guess that is why they call it in-law-itis huh? Too bad they dont make a pill for that!

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  11. LOL - That's cute, Anonymous. In-lawitis. And I know, sometimes it spills out IRL for me too. I think my In-Laws wish my hubby would have just married a quiet, healthy woman. Oh well, they got me!!!

    Sorry it took me so long to respond anto everyone. I had a Rituxan infusion Monday (10 HOURS LONG!!!) and all these storms keep knocking me off line.

    Lana - Thanks for thinking I'm smart. My major skills most days are playing with tiny motor vehicles and wrestling prescription costs with drug companies. ;) But you made a lot of really good points. But we should all be leading that research team! :)

    Wren - I am just like you. Ms. Scientist in many ways, but I can't ignore the stuff I can't explain either. Since I am so rational, I know I'M not crazy. LOL!!! But thank you so much for endorsing my opinion, b/c sometimes I wonder if I am the only one.

    RheumforGod - That is a good point! I have been on meds for so long, there are some possible triggers I may not be aware of, but then again, meds. only work about 50% for me (thus far, hopefully!), but I do notice a difference with some naturally occuring things...fish oil, epson salts, I should do a list of them!

    Tazzy - Nice to know there is another severe insomniac out there. I decided to go off the ambien, b/c even with it, I hit a 72 hour streak with no sleep this week, and that was after swalling ambien. I think we're going to explore some other options, b/c I can't sleep every 3rd day. No sleep is one of my biggest triggers. It is a bad cycle, isn't it?

    ValleyWriter - I'm glad I got your gears turning! You have one great mind to devote to the cause!!!

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  12. Sorry for the typos everyone. I have to post while I'm still online these days. The only good thing to come out of this is that each day we go without internet for any amount of time, they knock a day off our cable bill. I think we're down to paying for 2 days the entire month! LOL.

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  13. I love your blog! Sarcasm is something not many appreciate or enjoy, but I think its hilarious! Keep up the good writing! Wanted to let you know you won a blog award.

    Michelle

    http://thelifeandtimesofagirlwithra.blogspot.com/2010/07/i-win-blog-award.html

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  14. you're an idiot

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  15. Hmmmm...Anonymous, You are entitled to your opinion, but at least you could be brave enough to identify yourself. And though you may disagree with my opinions, I doubt anyone else would agree that I am, in fact, "an idiot." Anytime you want to go toe to toe on an IQ test, I'm ready, dumbass.

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  16. P.S. Anonymous - Rumor has it that you ugly and your mama dresses you funny. You may want to work on that and spend less time reading "idiotic blogs." Just sayin...

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  17. Well, I didn't comment the first time I read this, but gotta say that the idiot comment is totally uncalled for. Obviously, you are NOT an idiot.

    Scientists haven't yet figured out what causes RA. People who actually deal with this disease do see patterns. When enough patterns are reported, then the researchers will have information to go on. Maybe someday there will be a cure.

    I've found it interesting that using plaquenil as a DMARD is due to the number of RA patients who took this drug to avoid malaria on vacation, noticed the improvement in symptoms, and reported it to their doctors. After a while, doctors recognized the pattern and conducted some research to see if there was any merit to people's observations.

    We should all be speaking up more, sharing our stories, so that perhaps future generations won't have to deal with this.

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  18. Socks,

    I didn't know that about the plaquenil. That is very interesting.

    You know, my hubby and I were trying to figure out why this post out of all of them angered Anon. since this post is probably the least offensive I've written. Then we decided she must've worn a tiara to her wedding.

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  19. You definately have something with your pattern theory. Being diagnosed at 35, I was always the one person under 80 sitting in the waiting room. I take Actemra infusions and am one of only 3 patients in the practice on it. The infusion nurse said that she noticed that while we had nothing in common with the majority of their patients that all three of us were the same age, all diagnosed with agressive RA, all had unexplained autoimmune "complications" (which I take to mean we all get shuttled from dr to lab to specialist then back to lab back to same specialist to be referred to another specialist for further testing and eventually back to original only to be chalked up as inexplicable and therefore untreatable). I find that I have the most in common with people around the same age. I'm not sure if it was something environmentally around that time (like maybe certain antibiotics that were used in this area during those years or some particular virus that spread during that time and acted as the trigger and set the hyper auto-immune system off). It's definately worth comparing notes and exploring and I can't imagine anyone being offended by the idea. Oh....I also agree that a tiara should be worn as you're delivering a heartfelt speech about world peace, while you're lording your popularity over hordes of students in dresses you will regret in ten years or while you're ruling a country and nowhere else.

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  20. Hey girl!

    I've thought about you a lot lately and have wondered how you are doing. I have a couple of awards for you at my blog. Hope to hear from you soon!

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  21. I would like to suggest you visit www.roadback.org and look into low dose, long term antibiotic therapy.

    There is also a book you can read on the subject. "The New Arthritis Breakthrough, Including Dr. Brown's classic, The Road Back by Henry Scammell"

    I can't offer much in the way of info, since I am new to it myself, but I sure wish someone would've told me about it years ago.

    Take care,
    Gina

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