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Nekhbet
09-30-2007, 05:50 AM
I'm tired of the lupus. I'm tired of being scared to tell the Dr anything incase he puts me on more medicine or tells me we can't try for a baby yet again. I'm tired of all these stupid little things, the rashes, the sore joints, dropping cups in resteraunts as your wrist couldn't handle the weight, bits of me going numb, the constant headaches, the cold feet :mad: . I'm tired of all those little things that I don't think are serious, but then the rheumie goes and makes it sound like I'm falling appart or something. I'm tired of being tired. I'm tired of being sore.

I'm tired of only slightly abnormal blood tests- which really confuses my husband as he keeps asking if I *want* them to be abnormal. No- I just want them to make sense.

It makes me doubt the diagnosis, but then some new symptom comes up and I know that the symptom is pointing me straight back to the lupus diagnosis. Then I am straight back into denial.
I hate the uncertainty. I spent yesterday crying and my hubby doesn't understand why. Heck, I don't understand why.

Everything is conflicting. Including what I think/say. I'm tired of being sick, but tired of feeling essentially fine and told I'm sick. How does that work? Yet, that is what I think.

I know how much worse this could be, and that kills me again. What right have I to complain about anything, when others are so much worse. why can't it all just make sense??!
:mad: :mad: :mad: :mad: :mad:

hatlady
09-30-2007, 02:21 PM
Gentle hugs, Nekhbet.... Oh I understand. My tests usually look the best when I feel the worst. My rheumy just shrugs and says that's the way it is sometimes. My primary care phycisian says "we listen to how our lupus patients feel, that means more than the numbers."

Hmm, next time I see him, I'll have to ask if he has anyone in his family with lupus or related - he seems to understand.

Some days I wake up alive breathing deeply of life. I drive to work singing (only old musicals fit that - "OH What a Beautiful Morning!" from "Oklahoma" seems the preferred). Other days I can barely crawl out and the drive to work feels hours long. Pain all the way. Sometimes I'll try to sing then too - knowing that the extra oxygen might help me feel a bit better. Sometimes it does.

I do my best to remind myself that each day is a blessing - and know that some days I feel more blessed than others. It is so helpful to know there are others who understand, and who I can lean on when I need it as well.

Many gentle hugs -

Saysusie
09-30-2007, 02:25 PM
Oh Nekhbet;
I can feel your frustration and confusion and anger :lol: Please believe me, I truly understand because I have been exactly where you are (and I bet that there are others here who have also been where you are). When we, ourselves, cannot make heads or tails about what is going on with us, then it stands to reason that our loved ones are in total and complete darkness and at a loss as to how to help us. That, alone, causes stress and misunderstandings which, in turn, exacerbates our symptoms.
I think that the real problem is that you are trying to apply logic and a clear delineation to a disease that defies both!
Lupus is nothing, if it is not unpredictable (as is almost all auto-immune/connective tissue diseases). Your quandary is due to the fact that you have not received a definite diagnosis and your tests never pinpoint any specific disease. Unfortunately, for most of us who suffer with auto-immune disorders and/or connective tissue diseases....the uncertainty is our normal. In other words, the very things that you find frustrating about your illness are the things that are normal with your illness.
You have probably read, in many threads here, about how so many of us were finally happy to have a diagnosis after years and years of doctor visits, tons of tests, years of dealing with the naysayers who told us it was all in our heads, watching as different specialists just scratched their heads and give us confusing (if not conflicting) answers! That, sweetheart, IS OUR NORMAL!! I'm sorry to have to say that to you, but it is true.
You are going to cause yourself too much stress if you keep trying to make logical sense out of an illness that is illogical, if you keep trying to make your illness and your tests follow some form of clear delineation when there is no such thing in these groups of illnesses. Take a deep breath and know that, the only logic and clear cut path you will have is the logic of paying attention to your body, taking the necessary steps to avoid a flare, protecting your health as best you can and knowing what life-style changes you will need to make in order to achieve some form of "normalcy" that works for you.
As you said and as has been stated in these forums, Lupus does not follow any specific pattern (nor does any other auto-immune disease), in fact, its symptoms mimic those of so many other illnesses. Many times, doctors have to wait for symptoms to appear or to worsen before they can determine if they are due to Lupus (or another auto-immune/connective tissue disease). Try to concentrate on lessening your symptoms and paying attention to your body and learning as much as you can. It is not always going to make sense, but you will always be able to know what is happening with you and what works for you!
We are here for you.....always!

Peace and Blessings
Saysusie

seafoam
10-01-2007, 07:20 PM
[color=cyan][/color I just want to say for what it is worth, that I agree with the other posts about how we feel and what a diagnosis and validation of our symptoms, but I really find that when I am in a flare - my mood hits the skids - it's like it flares too. I find I am really tearing and even though I know I don't have symptoms as bad as others - i feel sorry for myself at times. I have given myself permission to feel sad (and angry) about how unfair, uncool, not understood, etc - especially when those moods hit. When I am in a better state of mind, I look back and think how crazy I must be, but oh well - I think it keeps my doctor on her toes when she opens the door to the exam room!!

vw
10-04-2007, 07:14 PM
I know - tired - tired of being tired - aching , sore and confused about it all. There are days I just want to cry but I think we just have to feel blessed to have the strength that we have . Lets face it you have to have alot of strength to deal with this crap ... So chin up and smile we are all blessed..

vw :)

browneyedgirl53
10-08-2007, 04:38 PM
Hi Nekhbet,

I think between Hatlady, Saysusie and all the others; everything's been said. Saysusie is right, we're dealing with a disease that defies boundaries, blood test and "routine" symptomatology.

As my grandfather used to say to me when I would ask him how he's doin'.....he would say "Well, Darlin' as long as I'm on this side of the dirt...it's a good day for breathing and dreaming"!!

We ALL need to be able to vent, cry, scream if we need to, ask questions and find ourselves in the company of people who truly know what it means to have a "too sore to stand, to weak to sit, everything hurts"...and that's why I love WE HAVE LUPUS. I believe it by far the KINDEST network of caring people who make it positive, productive, compassionate and safe.

I'm glad you're with this group; keep coming back - it helps us all when we can be here for each other.

Attitude has alot to do with how we live with this disease. There are so many wonderful and funny people on this site....so for today, and if only for this minute....choose joy! In the midst of your frustration, there is comfort in knowing that you are not alone....AND THAT IS WORTH ALL THE GOLD IN THE WORLD.

We care about you and you will be in my thoughts and prayers. Hang in there.

Much love,
Browneyedgirl

LAURIW
10-11-2007, 12:38 AM
hey all
Oh my, I can so identify with this! it's actually scary!
I've made a concious decision to accept the way I feel and expect everyday to be like that and when I have gud day, i feel excited and amazed, in a sense i've identified a NORMAL that relates only to me, basically a state where there is always a dull ache lurking somewhere, where I always have to wear flat, comfortable shoes to avoid aching feet( I'm only 28yrs old but haven't worn heels in years!), where i always anticipate a fever coming along etc) I think if ppl without lupus should live an day our lives, they'll appreciate their NORMAL so much more!

I know it's difficult but try to saty positive and 'always look on the bright side of life' or shall I say, SEARCH for a bright side of life! :wink:

thinking bout all of u always
Lauri

beth2300
11-08-2007, 09:42 AM
just read this post and cried. ditto... it is exactly the way i feel, just couldn't put it into words.

angela
11-08-2007, 09:44 PM
ditto beth2300.

nekhbet, your words could have come straight from my mouth too. everyone here has those feelings, im having one of those 'tired' days today too. so i wont say too much other than to say hang in there, it really does gets better. and that you have every right to feel what ever, however you feel. NEVER deny yourself that! for me, the first step was realizing that i really had to allow myself to feel how/what ever i was feeling. and that it is what it is my.

and just that my dearest - it is what it is, when it comes. saysusie, browneyed girl, and so so many others here provide us with so much..... (and i'm sure it's hard for them to do that too!! :lol: ). use this resource.

be well my new friend :wink:

http://princesstinybutt.blogspot.com

mnjodette
11-11-2007, 06:00 PM
I'm still catching up on some of these posts - Oh, did this one ring my bell! It IS so confusing - and somedays it feels like I'll never understand what's happened (and is still happening) to me. And because lupus never 'attacks' two people in exactly the same way, it's not always easy to draw comparisons to someone elses experience. But this place is THE BEST. I can find support, humor, information. Nobody judges how I feel or thinks my questions are dumb. Thank you, Saysusie, for all that you've done to make this possible. Nekhbet, always know that there are others feeling things just like you do - never doubt that! God bless - I hope you're doing better.

Jody