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KATROACH1972
04-14-2009, 10:42 AM
I am sooooooooo tired, and sick of everything! Ready to just give up! Between misdiagnosis and feeling horrible, and everything else I just want to go on vacation to laa laa land! Sorry just frustrated!!!!!!!!!!!!:hissyfit::wacko::unsure::sk eptical:

Oluwa
04-14-2009, 11:07 AM
Head hugs...Talk it out with us, Kathy....what's going on.....it can help, chatting about details to put things back into perspective, regain footing and move forward.

I dislike the stupid hole...I find if I don't find ways to manage my frustration, disappointments I fall in and my symptoms grow ten-fold...

Love..hugs,
Oluwa

KATROACH1972
04-14-2009, 11:32 AM
Just frustrated! Been misdiagnosed 6-7 years with lyme, meanwhile getting worse! Seen rhuem who was wonderful and even though my ana was negative with my symptoms and my family history, treating for sle. Then I have new primary, who questions that diagnosis, and sends me for mri which has lesions on brain and refers me to neuro. who cant see me till 23rd! Mean while I have hallucinations (only while laying down!) and headache(only when laying down!) and I tell primary and he says to cut my prednisone in half, but I am in flare for atleast 4 months now and my crp is high, and my c3 complement is high(so this is inflamation!) I call my Rhuem and hes out of state, and his nurse said dont cut your dose you are not on a high enough dose to make you have pyschosis. Which I being a nurse for 17yrs know it cant! Ive had diarehea 10 to 11 times everyday last 2 years! I have bright red cheeks, and constant low grade fever, with joint hurting, bladder urgency,bowel urgency ect........ I am just tired of everything! Sorry! This is only 25% of it my thoughts a are not correlating, cant think cant talk right, dizzy, crybaby! :hissyfit:
Head hugs...Talk it out with us, Kathy....what's going on.....it can help, chatting about details to put things back into perspective, regain footing and move forward.

I dislike the stupid hole...I find if I don't find ways to manage my frustration, disappointments I fall in and my symptoms grow ten-fold...

Love..hugs,
Oluwa

wrightrs
04-14-2009, 11:41 AM
Please don't give up.:3: Up you have so many people that love you and count on you.:smlove2: Your family your children and us!!!!!:hug:

KATROACH1972
04-14-2009, 11:47 AM
Thanks you ladies! i will not give up, just been very hard last few months! Hugs to u all

Oluwa
04-14-2009, 12:08 PM
Head hugs....Never apologize for being sick and talking about your woes. I understand your frustration, anger...blah feeling, wanting to give up...losing trusts in the doctors....

It is okay to crack up...we can always put ourselves back together again...

Right now just breathe in deep, hold and let it out slowly through your nose...one more time...

Can you take a soak, find some quiet time...to bring your thoughts and mind to a calm...

I don't know all your syndrome, diseases, medicines and etc....so, you know me, I toss ideas out there to help you gain footing because I feel being in control can help symptoms subside...

Does your RheumBA have a doctor in partnership in his office...could you do a walk-in with him?

Have you been tested for CNS vasculitis? Is that what they plan to rule out with your neuro? Maybe you should go to the ER....

With constant diarrhea you maybe experiencing low sodium...that could cause hallucinations...or even Plaquenil...Hydroxychloroquine ..are you dosing with it. Plaquenil can cause diarrhea too....

Have they tried other autoimmunesuppressant drugs to help surrender this SOS flare...clearly you need something?

What has your gastro said about the diarrhea?

I wish I could do more, but all I have is ideas, thoughts for you..head hugs...

Prop yourself up in bed...turn the TV on low..draw the drapes..find a calm, say a prayer....say I can do this. Because our disease loves stress...it feeds it and it gets bigger (symptoms...)..

"An ancient principle reminds us to look for salvation in the darkest, most painful parts of our lives. We emerge into the light not by denying our pain, but by walking out through it. The common turn of phrase we apply to this wonderful action of
grace is: 'that was a blessing in disguise.'"

Head hugs.
Love,
Oluwa

KATROACH1972
04-14-2009, 12:37 PM
I am only on Prednisone, and two bp medicines. I was on Methetextrate for 7 months but discontinued it 5 weeks ago because had stomach flu, and my hair fell out more then usual! I had a test done for the for SLE, Sojournes, antiphospholipid all normal etc.. I have Sle as diagnosis on charts even though ana, negative. My Rhuem says he knows its autoimmune, but it may be my own disease, with no name. I havent complained about diarehea, just stay close to bathroom. The only test that have went up are my wbcs, platelets,mpvs, neutrophils,my sodium is low(but I eat salt?) C3 complement is 212mg suposed to be 83-184, my crp is 5.2mg, and 2weeks ago it was 0.30mg. normal is 0.0-3.2mg. I have a sister with ms, and one with Lupus, both diagnosed after I started getting sick. A neice just diagnosed few months ago with Lupus, and several cousins.(all with positive ANAs) I dont know if antibiotics for 7 years made me not show antibodies, or what. Who knows? Just want to know what i am really fighting, b4 it takes me out! Thanks again. I would love to relax but my 4yr old is sooo energetic! lol no naps, and stays up late! So I gotta tend to her so my hubby who works and my 3 other kiddos can sleep. Thanks bunches! hugs to you sweetie

Angel Oliver
04-14-2009, 04:58 PM
Oh my dear friend. Imagine....you may be so frustrated now and feel so alone.....now close those eyes.....do you feel it? That is the many hundreds of members here holding you up and sending you strength. I know life can be so very hard, but you keep fighting it.We will all help in some little way, but all together it will be a massive help. Its the 15th now, so time will come around very quick for your appointment.
Sending you lots of love
Angel.xxxxxxxxxxxxxxxxxxxxx

KATROACH1972
04-14-2009, 06:34 PM
Thanks sweet friend! Sorry just a bad moment or 2 or 3 or 4! lol Hugs:yes:

wrightrs
04-14-2009, 10:33 PM
I'll be praying for you!!!!:yes:

ashleybaby715
04-15-2009, 04:34 AM
don't give up.

you just have to stay strong, for yourself, your family and ofcourse US! :]

gina
04-15-2009, 05:17 AM
I will keep you in my thoughst. just remember you have everyone on this site for you to vent too. try and keep happy thoughts when feeling bad like the four year old laughing and givin you hugs and sayin i love you mommy. helped me when i was feeling like you. and also remember you woke up today and thats good your family needs you. and you have us to vent too.

keep smiling it helps you feel better watch a funny movie:yes:

Oluwa
04-15-2009, 06:26 AM
Hi Kathy...

Hugs...feeling better this morning..in spirit? Isn't it such an emotional roller coaster ride.

I would mention your chronic diarrhea to your doctor...it could be something as from eating too much fiber. Infection? Allergic to wheat? It could be a myriad of things.

Having symptoms in our digestive tract can affect our whole being because most of our immune system, cells is in our digestive tract...the good and bad bacteria maintains the balance...

Certainly the 7 years of antibiotics could have change the flora in your tract....I would have that investigated...

Soon the 23rd will be here..hang tight...

Love,
Oluwa

KATROACH1972
04-15-2009, 09:04 AM
Thanks Ashley, Gina, Wrighters, and Oluwa! you help more then you know! hugs

KATROACH1972
04-15-2009, 12:21 PM
Thanks everyone! Today is not as bad as yesterday, hopefully tomorrow will be even better!! hugs

wrightrs
04-15-2009, 12:38 PM
Hope your feeling better Today!!!:yes::laugh: So many people care about you!!!:fam21::071:

KATROACH1972
04-15-2009, 12:56 PM
:cute:Thank you my friend! you are wondeful! and you deserve a huge hug!!!!!!!!!!!!!!:yes:
Hope your feeling better Today!!!So many people care about you!!!:fam21::071: