Perfection, Complete Absence of Pain, and NO NAPS

[Carolina]

Ok dearest Sjogren's Angels,

All I've ever asked for is Perfection and Complete Absence of Pain.  (this isn't possible, of course, and in some psychiatric circles it is known as a "Death Wish" actually).

Now I'm adding:  NO NAPS

You may recall that I never nap. It is my credo, my mantra.

I have to be really sick before I nap.  In fact taking a nap is a sure sign I'm coming down with something.

Yesterday afternoon I took a two hour nap.  I woke up tired today, and took a two hour nap THIS MORNING!

Eeeeeeeeek!   

I am very tired, my skin is burning, there is no point in anything I do (that is depression, of course).  I am not sick, in fact I don't GET SICK now that I have IVIG.

What I am having is another freaking FLARE.  A week out from my IVIG, for no apparent reason.  Taking 2.5 mg of Medrol still.  And here comes another FLARE.  What I'm feeling is the results of inflammation, even my teeth hurt.

Granted, it isn't 'end of the world flare'.  But wait, when I take a nap and wake up tired that IS the end of the world as I know it.

SO:  I took another Medrol, AND another Gabapentin (both more than the regular dose of each).  Now I will wait and see what happens.

You know, I keep forgetting that flares happen for no apparent reason.  I mean they are the result of inflammation, and the inflammation is the result of my Immune System attacking my organs/systems.  I KNOW this.  But what I don't get is WHY?  What has triggered this.  I do think, going over my record, that I got several last Spring, so perhaps it is Spring?

Actually when I review my notes, I have had episodes of mild flares all along.  AND YET I FORGET THEM!  Indeed, once the flare is gone it just slips into amnesia.  This is why the record is so important.

I can go back and see that this is something that comes and goes, in spite of the IVIG, in spite of the Medrol.  If I tried the IVIG Without the Medrol I would be in one long increasing flare until my life became unbearable.  But the Medrol isn't completely stopping the flares.

So I tried taking 2 mg more, and 600 mg of Gabapentin more.  And now I'll just sit here, or maybe I'll take another nap.   

Hugs,  Elaine

[cccourt1942]

 

[A66eyroad]

Elaine, I'm sorry you're going through this flare right now. Hugs to you! I hope you're back to your feel-better self soonest!

But you brought up a great point that I've wondered about --- I don't remember being sick, either! And it seems like whenever I go to the rheumy it's during a feel-good spell, so he has no idea that I'm still so sick so much of the time.

I don't want to be that impossible and oh-my-gosh-here-she-comes-again patient who is always kvetching about one thing and another. So my question is, how do you whip out your handy notes and talk about your pain and nausea, etc. without sounding like (a.) the village idiot or (b.) the cranky woman who's always yelling at the kids to get off her lawn?!?!?

[Kathy57]

Oh Elaine!

I am so sorry!  Hope this flare doesn't hang around too long.  I feel I'm in a bit of a flare also, but perhaps not as bad as yours.  I'm thinking it is Spring, too because I was miserable last year at this time.

I feel fatigued but no naps so I have more energy than you.  My lungs are bothering me and my sinuses which the Sjogrens likes to do to me.  I'm currently on 30 mg of Prednisone for 3 to 5 days depending on how I feel.  (I can tell u now that it will be five days!)

That is what my Asthma Dr does when my asthma kicks up,  and my Dulera has been increased but it takes a couple of weeks for that to kick in.  Meanwhile it hurts a little to take a deep breath.  Lungs are clear.  The good news is that I am starting to feel better because of the Prednisone. 

I'm not coughing as much and the secretions are diminishing!  If that's not indicative of inflamation then I don't know what is!!!

I also purchased some NAC on Amazon and it should come next week.  I'm going to try it for its mucolytic effect.  I suppose I should tell my asthma Dr, first.  I tried to buy some yesterday and I couldn't find it except at Walgreens and it was behind the counter! 

Then they wanted to charge me twice as much for half the pills compared to Amazon so I just bought through Amazon.

I could have checked around some more but that would have taken time and driving.

Today I am babysitting my 3 month old grandson!  He is so cute and sweet and EASY to take care of!  He doesn't care if grandma coughs, clears her throat quite a bit, and has dark circles under her eyes.  He also likes my singing no matter how bad my voice is!  Ha ha!

Sjogren's has done a number on my voice!  I won't be asked to sing in the choir, but I used to!

I'm so sorry that you are feeling poorly, and hope this passes soon.  (We can hope even though we know that Sjogrens has its own darn time schedule regardless of what we want or need!)

I hope you at least have pleasant dreams. 

Kathy

[Helene]

Flares always seem to sneak up. I spend a lot of time trying to figure out what triggers them, but almost anything seems to. Spring brings pollen which makes allergies worse which triggers a flare. I actually think that depression itself will trigger a flare as well as the other way round. Anything that puts the slightest strain on my system can trigger it. It's like I'm always on the edge of an abyss of exhaustion. So I know how you feel. I just wait for it to pass so I can taste another small morsel of my life.

[Nymph]

Hi Elaine,

When I read your title I though you had achieved immortality. 

I am so sorry you're in a flare. I understand about forgetting once it's past. I do, too.

I hope this one passes quickly.

hugs,
Nicole

[Deb 27]

Elaine, I hope you come out of the flare quickly. It certainly sounds like you are doing everything you can. We've had a lot of rapidly changing weather here in the south. I don't think that helps us.

You bring up a good point to keep records or a journal. I think I am going to start keeping a journal. You are so right that we totally forget the flares and little details about our flares and such. I think we would be overwhelmed if we remembered all the details about being unwell.

Feel better soon! 

[meow]

Flares come with allergy season for me.
I also know that if I go longer than 3 nights in a row without decent sleep, I am putting myself at risk. So those times, I will definitely nap.

[Carolina]

Oh meow, I ALWAYS get decent sleep.  I'm the sleep master in fact.

But I woke up tired, so the tiredness is a result of the flare, not the cause the freaking flare.

I keep a record EVERY DAY, since I started Infusion of IgG.  I write in the morning, first thing,  When I'm checking email.  And sometimes I go back and add things during the day, like today I took more meds so I write that down.

And Abbey, I don't whip out my list, but I DO go over it and make some notes.

My notes for the meeting in June with my Immunologist will be:  X number of flares,  Y of them when my Medrol was low,  Z of them at other times, all of them with profound fatigue (requiring naps!) pain (including jaw and tooth pain) depression and itching burning skin.

In my case I will plead to increase my dose of Medrol (corticosteroid) and KEEP it at the same level all the time.  For Quality of Life.

Generally things told to doctor follow this schedule:

1.  MOST IMPORTANT THING FIRST. (no 'working up' to the grand finale)

2.  Type of pain (stabbing, throbbing, aching, intermittent, constant), Meds taken, Length of flare (last one day, two days, etc), level of disruption of life (work missed, for example if I were working),  Frequency of this type of episode, relational issues (time of day, food eaten, lack of sleep, environment change).

3.  The key is that doctors have a huge data base from education and experience.  They are rapidly scanning your data and synching with their data base.  Tears do not help since they are subjective.  Some of us have very high pain threshholds and NEVER cry.  Just like I 'never nap'.

4.  This is what makes us so difficult:  we have stuff many haven't heard of, we have such a wide range of reactions to drugs so we are hard to help.  It takes a special doctor to want to spend the time and effort and never achieve perfection for us.   It makes many doctors feel bad when they can't help.  How much easier to move on to someone they can help!

So we need the really good ones!  They exist, usually in University Medical Centers where their special talents are appreciated and they get lots of fascinating cases.

Yes, I have searched forever for perfection and complete absence of pain...and one of my 'problems' is that I think I'm 'doing it wrong' because I haven't achieved the unachievable!

That's why my mantra is:  Patience, Persistence, Acceptance.

It takes real talent to know when and what to accept. Often accepting myself is the hardest part!

Hugs,  Elaine

[warmwaters]

flares are kind of like child birth, a few weeks later and you forget most of the details. 

But you said it right, sometimes flares just come and hit you. But the human mind craves reasons.  It thunders because Jove is angry, I burnt myself because I forgot to throw a pinch of salt over my shoulder, and I got a flare cause I ate a chocolate chip cookie.

We'd love to have reasons for our crazy health issues, because then we could fix them!

Still, the medrol issue seems real for you.  Good luck with getting the doctor on board.

[lane]

[size=12pElaine... Great post on Dr appt prep (but sorry you have gained so much experience) .I think patients need a glossary of medical terms.  I once told a doctor about pain in my leg and was dismissed. I complained to his nurse who said " well, if you'd said stabbing pain it would have been meaningful".  Well it was stabbing but I hadn'T thought of that word!  Frustrating!!!t][/size]

[eye2dry]

Sorry your in a flare Elaine.

A flare to you means you have naps.


To me a nap in the middle of the day is bliss


take care and bounce back soon.

shelly