Excellent story about explaining how you feel to others

[TrudieC]

This relates to Lupus but could be the same for quite a variety of auto-immune diseases.  I've passed this along to my family members so that perhaps they can understand how it feels to be me and sick.
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

[AireScottie]

I don't have a positive RF factor.  In fact, I had to have a lip biopsy, because none of the antibodies were elevated.  I just had elevated sed rate and C-reactive protein for years, plus constant fever, swollen salivary glands, destroyed nervous system, and of course, Sahara Desert-ness.  My neurologist has seen some cases like this, and she says that if Sjogren's attacks the nervous system, it does that long before other more "normal" symptoms show up.  No improvement with the Plaquenil so far either.  Gah!  But you know, it has way less side effects than the alternative treatments, so it's very good if it works for you!

As for the 14 years, yeah.  You can guess what I think of doctors :)

[TrudieC]

Good luck with everything!  Hope you can get on the Plaquenil and get some relief, keeping in mind it takes a few months.  I go back to rheumy in August and need to try something more.  Not sure what the heck constitutes needing more treatment.  Wish I knew what feeling as good as it gets on Plaquenil means?  

[Lori707]

14yrs?? That's outragious. I heard it can take up to 7yrs but wow. I can't imagine what you went through.
Question: Do you have a positive RA Factor with Sjogrens?

[AireScottie]

Fantastic!  Thanks!  It took at least 14 years for me to get a Sjogren's diagnosis, and I think it's entirely because I didn't look sick to the doctors.  One doctor actually wrote in my file "Patient doesn't look sick.  She is laughing and talking with her friend."  Well, excuse me for trying to be positive while my body falls apart and I can't get any help!  I will definitely send a link to this for the friends who stuck with me.

[Lori707]

I couldn't get up at all today. I woke up feeling such incredible heaviness in my limbs and body along with my usual vibrations in my head. It was hard for me to lift my arms. I never had it so bad before.

As per all of my other symtoms, I can't explain most of what I'm feeling. There's no words to describe it. I go to the doctors and they have no idea what I'm trying to say. All I can tell them is: "I wish you can be inside my body just for 1-2 min. and then you'll know what I mean".  It's so frustrating.

I lost so much weight that I became gauntly looking and bony. Also very pale. As one of my meds kept getting increased, I gained weight from that-22lbs. So now everyone is saying.."You look great..I'm glad you're feeling better".  Huh? I feel **** but they don't get it. Nobody does. I feel helpless.

Anyway..
TrudieC- just saw my rhuemy this week and he said not to take the plaquenil as yet. Remember how afraid I was of it? Now I can't wait to take it because I think it will make me feel better. I'm taking more blood work and we'll see how that comes out.

Be well everyone!

[Smilerdeb]

You deserve a Medal...not spoons lol !
Most find it hard to even literally 'think about doing something'...let alone do it.

I congratulate you and do know where you are coming from.
It does get easier with time and levels stabilised, believe me.
I still get tired but I DO know my limits now.
If it doesnt get done today...the worlds not going to come to an end.
I kept telling myself that as time went past before RAI and I still believe in that thoery.
I started to say NO to people (I am always one to say yes to anyone.) and decided on 'ME' time.
I found I was running myself ragged running round helping other people but they were nowhere in sight when I needed help.
I basically got rid of the 'Freeloaders' so to speak lol.
I turned all negative into POSITIVE as much as I could.
A positive attitude is a great self healer.

[OldFatChick]

I am in awe of her ability to put what I feel into words. I do not have Lupus, at least they don't think so.  I have what is called undifferentiated connective tissue disease, which is another auto-immune disease.  I am also hypothyroidal.  Today I went with my husband to the local home improvement store to pick up some blinds for the house. By the time we left there I was in agony.  I could hardly walk due to the pain in my feet and ankles.  I was spasming so bad I couldn't stand up straight and I had to walk bent over like an old crone. I have been putting off getting the blinds because shopping is such an ordeal for me, but I couldn't stand those windows mocking me for another day so I said "let's go" and off we went.  The entire trip probably lasted no more than an hour.  Earlier I had steam cleaned a couple of high traffic areas on my carpet, so I was already tired, and I had babysat with my youngest grandson for a couple of hours that morning.  For most people that would have been a pretty run of the mill day, but I am so exhausted I can't even get enough energy to go take a shower.  Yuk.  I need more spoons!!!

[joycekatherine]

Just wanted to let you know that I have signed up for email updates on BYDLS!  As much as a shower, shaven legs, shaven armpits and a shampoo makes you feel fantastic, I am absolutely worn out afterwards!!  So, to have to actually *GO* somewhere after accomplishing all that, is extremely exhausting...I have started taking showers, etc., the night before I have to *GO* somewhere!!!  That's one less *SPOON*, I have to worry about, the day of...Thanks again for the "Spoon" story!!  ;)

[Smilerdeb]

I also changed it with my Docotr and explained I had 8 fingers and explained with each finger.
Good way of doing it too.
He looked at me afterwards and I saw tears well up in his eyes.
THAT was the day he finally understood.
No going back since then, full steam ahead with understanding, compassion and working 'together'.

Thankyou for sharing that.

[Smilerdeb]

I read that post when I was going through hyper and graves and it truly helped Robert understand what I was going through.
It opened his eyes and made my family realise I was just a whinger.
Thanks for sharing
Hugs x

[crwstar]

Wow, just read this. Thank you for posting it. I'm still in the process of finding out the specifics of what's going on with me and its sounds like a good part of how I plan my days and even weeks ahead.

Thank you!

[redheadaussie]

Oh lordy! I rarely cry..but that story is my life! I am going to send it to all my family who think I am doing sooooo well! Just cause I made it to my brother's engagment party (2 and half hour drive away but had one of them take me, it was my birthday after all, so they felt obliged..I would never have gone by myself, I would have been too unable to even start planning the enourmous amount of rest breaks.) they told me how fantastic I looked, how calm I am, how marvellous it was to be there! Took me 3 weeks to get over the whole evening! 3 weeks! That was May 30 this year! I only just last week finished emptying my suitcase and putting things back where they belong!
  How many evenings I go to bed with no dinner in my tummy coz I am just too exhausted to even open a frozen meal and shove it in the microwave! I have excellent days and then I have horrendous days...which last for weeks!
That little link you posted was wonderful and beautiful! Thanks so much!

[joycekatherine]

Read it and sent the link to my niece, she was diagnosed at age 9 with Lupus.  She has not let it stop her from becoming an RN and working on an oncology floor.  She is now 28 and has recently told me that she thinks she may have Fibromyalgia, too.  I really respect her hard work and dedication, especially when I know, sometimes, it's not easy just getting up in the morning!  I am waiting for my blood work to come back with possible Sjogren's...at least I have someone in the family, who can understand.... ;)

[joycekatherine]

I am going to read this right away!  I, too, am tired of hearing that...You don't look sick to me...as if it is fun to feel like c*r*a*p all the time, or we're faking it!!  I get tired of going thru all the details for everyone too, just hoping that they will understand...I have thought of printing everything out and giving it to those non-believers!!! LMAO  It's just a lil fantasy that helps me cope... ;)