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lagrace
07-07-2009, 01:13 PM
Hi everyone...I guess I need to vent. Sometimes I feel that I should not write here because I don't have a diagnosis or even sure that I have Lupus. I am not looking for a diagnosis, just answers. I am seeing a new rhumatologist at the end of this month. I guess I need some reassurance that I am not crazy. My hands and fingers are still bothering me...I just had the splint on and my fingers felt numb. I have restless legs especially on my left side as well as floaters in my left eye. I am tired all the time. I find myself laying down alot and wanting to rest. Sometimes I blame it on my weight. I have joint pains that comes and goes. I seem to be in a fog, forgetting things and then thinking to myself "boy was that stupid to forget". I also drop alot of things. I guess I am just rambling. My ANA was a positive with 1:8, low positive. Is that possible and still have lupus? And I forgot to mention that I am iron deficient. I feel like I am complaining. I felt relief when I saw the first Rhumatologist who had reasons for my discomfort and symptoms. However reading here, I am not so sure that I should dismiss the ANA results. AAHHHHHH! I cannot really talk to anyone here. My husband does not understand. He feels that the first doctor was good enough, why look for something that is not wrong. My mother will obsess over the situation. Well, I will stop complaining/venting. Thank you for letting me.
Lisa

Angel Oliver
07-07-2009, 01:21 PM
Hi Lisa,

You are in the right place and never worry about feeling you shouldnt be here, BECAUSE YOU SHOULD BE!! I too am undiagnosed and ready your thread is like a mirrored image of me,except i dont know about numbers n bloods as in the UK my doctors arent very giving when it comes to asking for stuff like that.Its even an effort for them to look and examine me never mind talk,some even keep yawning or prefer the dead patients...long story.
I too come here to vent often..sometimes about burnt hair,sometimes about crazy neighbours,sometimes about my dog who died but most of all about how i feel no matter how small it seems...at the time that one small thing is HUGE to me.
So you keep coming and vent ...we are all here for you and will help to support you through it.I myself do come here as family n friends have either gone or just think im lazy.So we DO understand.
Sending you gentle hugs n lots of love
Amanda.xxxxxxxxxxxxxxxxxxxx

rob
07-07-2009, 01:47 PM
Hello Lisa,

I don't think you are crazy at all. I think you have some very legitimate complaints and health concerns, and as such, you should try to find out the cause. I've been a Moderator here for awhile now, and a member for even longer, and I can say that you are very much like many of our members here. Like Angel for example, she doesn't have a for-sure diagnosis as of yet, and there are many others just like her, and like you.

You are not only 100% welcome here, you absolutely belong here. There never has been, nor will there ever be a requirement that a person be diagnosed with Lupus to be a member here. The only real requirement is the desire to learn about Lupus. You may, or may not have the disease. The best way to figure it out is to learn, and that's one of the main reasons for this site. Please, make yourself at home here.

Rob

Lala
07-07-2009, 02:51 PM
You guys and gals are so awesome, thank you for all your support, even though I have been feeling pretty good for a couple weeks I keep waiting for IT to hit again. I never go more than a month in between, knowing that we are so welcomed here is awesome!!!
Lisa I hope you get answers soon, and if you do not for a long time that's okay cuz we are here for you and for each other.

mountaindreamer
07-07-2009, 03:27 PM
to lisa and laura,

i just want to let each of you know that we are happy that you are here. I am sorry that you both are dealing with pain and daily debilitation, but this is a great place to find people to help you through these tough times.

Hope both of you are having a good day.

p.s. amanda and rob....you are the best.

Oluwa
07-07-2009, 03:34 PM
Lagrace...

The doctor said to disregard the ANA test? Why?#@! Did he rule out other possibilities, other diseases?

We look for a second opinon because we don't trust the diagnose or the words the first doctor says. Seek another..it's your body, your health...

We don't look for something to be wrong, we look for what is wrong with us, why we hurt, why we are sick in hopes to make ourselves well...

You're not crazy..if you are..then all of us are...and well, I know I am not.

Loco...
Love,
Oluwa

lagrace
07-07-2009, 05:23 PM
Thanks everyone for your kind words. I do feel like I belong here. At times I feel like my pain and discomfort is not as bad as someone else who has Lupus. I will learn about this and go from there. Whatever this is, I will overcome it and learn from it. If I can beat cancer, I can beat this! I wanted to thank everyone.:cute:
Love, Lisa

Oluwa
07-08-2009, 06:12 AM
Lisa..

Our pain changes with each, day...with each hour, even from minutes to seconds. Times on a scale of 1 -10...it could a 2 now and a week later a 7...varies. So, worry not where your scale of pain is to anyone else. Pain is pain and it is a signal that something is wrong in our body.

Your positiveness, to be your own advocate, to fight is a big factor in how the disease affects our body...and how we handle our symptoms as they appear. It is a hard road to walk...but I found having a positive outlook helps to manage the disease.

Helps breaks the vicious cycle of falling into the stupid hole, pain grows from that darkness.., hopelessness...the negativity grasp harder and you go round and around..pain, depressed, more pain, more depression...negative. Positiveness does break the cycle...

Enjoy this day..I am so far.
Love,
Oluwa

Delphinia981
07-10-2009, 04:00 AM
Lisa...I feel your pain, much like everyone else here. It took me SIXTEEN YEARS to be diagnosed with Lupus and RA. My GP was convinced that I had it, but my titers and ANA were always negative. Then bam...one day, it showed up. I literally wept for joy in the rheumy's office...as sick as that sounds, I was just SO happy to finally have a freakin' ANSWER...after so many years of suffering, unanswered questions, and myself feeling like a nutcase, hypochondriac, and lost cause. My family was all upset, but I felt vindicated if nothing else. I had looked for so long, and was so lost...it was just nice not to be fighting an invisible enemy any more.

Unfortunately, the good feeling of knowing what my problem was soon went away and I was faced with the cold reality that yes, I DID have Lupus...and even though I had gotten my much sought-after answer, the pain and problems were still there...it's just that now, they had a name. Good news was, I could start treatment. Even though my rheumy wants to keep things conservative for now, I've found a good balanced diet and supplements have helped me tremendously. It's all about finding what works for you. Don't be a dolt like me and wait 'til you get a positive answer to start making positive changes in your life. You don't have to be on meds to treat your Lupus symptoms. Yeah, you'll still have bad days, worse days, and days where you feel that your life is a river of #$@*...but as Oluwa says, positivity has a lot to do with it. For instance, I have now been up for...(checks clock)...24 hours straight with excruciating knee pain that I can't take meds for because I have a toddler to chase after. But you know what? I'm going to make it a good day. I'm going to wrap this sucker in a nice ACE wrap, pop my Tylenol, hit the ice, and give thanks that I have a knee to have hurt. Some days it's forced...God knows, it's forced...but I smile through the pain, the tiredness, and the brain fog. If you dream it, you can achieve it...and I dream of a life where my disease is controlled. I know that one day, God willing, I'll be there...but in the meantime, I pick myself up, dust myself off, and start all over again. It's a vicious cycle, but if anyone can break it, it's us...and know that you always have us to lean on!

Terry73
07-14-2009, 06:41 PM
I understand as well as I too do not have a definate diagnosis....I am in the same boat i have 5 of the 11 criteria but it doesn't show in my blood. I totally understand you carrie when you said u were happy to have a diagnosis cause im right there....i don't care anymore i just want to know what is wrong so i can face it and fix it. And so that i don't think that im going crazy anymore lol. It is nice to hear that others think and feel the same way that i do.


Terry

crmj1183
07-14-2009, 07:39 PM
Lisa,

You are not crazy nor are you complaining..... I would know Im the queen of complaining, at my old job they used to call me princess whines alot, lol. Anyway, you do belong here and if you are looking for answers you may find some here and if nothing else definitely comfort and understanding. Feel free to msg me anytime you wanna vent/complain. Im always here and listening. I hope things get better for you soon.


Chriss

Terry73
07-15-2009, 09:26 AM
lol my husband calls be Big Chief no Fun from the I don't wanna tribe lmao