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LupusPoopus
New Member


Date Joined Aug 2009
Total Posts : 12
   Posted 8/8/2009 8:35 AM (GMT -7)   
Hi everyone,
 
I'm LupusPoopus - a name my children have given this crazy disease back in 2004.
 
I'm 33, married, with 2 kids, and I have Lupus Poopus aka SLE.
 
Here's my story:
I clearly remember it was Friday, April 2 2004. The girls and I were getting ready to go out for our weekly dinner while Dean was at work. I felt like I got hit by a mack-truck and had a ‘control-type’ fall onto the bed. The next thing I knew, Dean was waking me up; it was after 10pm. Apparently the girls tried to wake me with no success so my oldest daughter took care of dinner and her little sister until Dean got home. (she was only 9 and I will forever feel guilty for doing that to her)

I had a hard time waking up and felt very *off*. I didn’t feel sick per say but something wasn’t right. The next morning, I woke up with paralyzing pain from my hips down through my legs. Something WAS wrong. At the hospital, they tested me for everything including a series of STDs with one battery of blood test after another but only one thing was certain; the doctor had a real concern tone that worried me.

I was given some heavier medication to help with the pain but I instantly started feeling worse and the room was spinning. Within minutes, the nurse told me it was time to go home and rest. She advised the results would arrive in a couple of days but the ANA would take two weeks.

Between the pain and the dizziness, I barely made it to the car and although the house was merely a few minutes away from the hospital, the ride home felt like hours. Dean helped me out of the car and I told him to run for a bucket…

The next few days were the same. I couldn’t walk, couldn’t do anything for myself and I was so tired. I felt so useless. But the worse was the medication which made me so sick. My doctor switched the prescription several times to no avail.

The words ANA played heavily in my head. Once I started to feel better, I researched ANA: Antinuclear Antibodies – When tested positive, it could be a sign of Lupus. Lupus? No idea what that was so of course I researched some more. Scared? Yeah you can say that! Especially reading that it is potentially fatal.

My ANA did come back positive which meant another series of tests and A LOT of appointments. I was immediately referred to a rheumatologist who explained I scored 7/11 out of the criteria. I received my diagnosis within a few weeks which was confirmed by three other doctors. They also confirmed that my Fibromyalgia from when I was 15 was a misdiagnosis and they should have tested me for Lupus then. GREAT!

I spent more time in the hospital that summer due to infections, pain, burning, swelling, rashes. I often felt like my hips were locked and I couldn’t move or walk. Needless to say, I learned more and more of the things I should avoid to prevent these flares. We moved to NB in November of the same year and although I continued to visit the hospital on a regular basis and still had many infections, my doctors weren’t convinced and didn’t treat me as a Lupus patient which became very frustrating. I no longer had prednisone or anti-inflammatory meds. Little by little, I got better but I was also more careful not to cause any flares. I still had pain every once in a while but nothing like it was in April/May of 2004.
Christmas shopping in 2004 was incredibly difficult to the point Dean would try to convince me to use the store scooters. No Way!

Fast forward to today. I'm back in Ontario since September. I have been having more pain in my hips and legs when I’m walking for a long period of time (ie. Visiting a museum) and I have to take stairs slowly. Any quick jerks and the pain starts to burn, either in the knee or hips. (And thanks to this forum, I now know that this could be caused by muscle weakness - will talk to dr.) I’ve also noticed some weight gain again. My skin is very itchy, I have spontaneous rashes, more headaches and masked migraines, I'm often lightheaded and dizzy, sores/blisters are appearing on my mouth, nose, face and arms, heart spasms, my cysts keep swelling, and my anxiety seems worse. Somehow, I didn’t put two and two together but when I told my doctor about everything that is going on lately, she nodded and said: “I think we should be sending you for blood work”.

She asked me series of questions all confirming that my remission might be over. She advised me on certain things to do to ease the current symptoms I am having and to try to keep another flare at bay.
I came home and cried in Dean’s arms. I’m so lucky to have his support. Over the past three days, the itchiness has been almost unbearable on my face, arms, chest and legs. Removing the creepy factor, my skin feels like a million ants crawling all over me with tiny tacks on their feet; especially on my face and shoulders.
 
Lupus Poopus

LupusPoopus
New Member


Date Joined Aug 2009
Total Posts : 12
   Posted 8/8/2009 9:51 AM (GMT -7)   
Well it appears we can't talk about a certain celebrity in this forum... my post got deleted which is really a shame because those wore sincere concerns I was questioning!

 

Katie aka Lupus Poopus 

Dx: Lupus, Hypothyroidism, Anxiety disorder, Bipolar,

Possibly misdiagnosis: Fibromialgia

Suspected: Sleep Apnea, Carpal Tunnel

No current medication

 

Quoted from about.com:
The majority of lupus patients lead normal lives. The worst adversary comes from within, when the patient loses hope, loses will, and gives in to frustration and depression.

 

We must all stay positive!


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7024
   Posted 8/8/2009 9:59 AM (GMT -7)   
I'm the only Lupus moderator on in the last couple of hours & I haven't deleted anything, so I don't know what 'celebrity' you might be talking about. I don't know if someone from another forum might have visited or not.

I can tell you that the intent of Healing Well is mutual personal support, and outside issues such as politics, religion, etc are not really welcome. There are a number of fourm "DOs" and "DON'Ts" that we ask everyone to read & adhere to. www.healingwell.com/community/default.aspx?f=46&m=106997

Thanks.
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7024
   Posted 8/8/2009 10:01 AM (GMT -7)   
Back to the subject at hand:

Welcome to the lupus forum! Your story sounds oh so familiar. This is such an insidious disease.

I'm sure others will be along to welcome you shortly - we have a number of active regular members, but it does tend to get slow on the weekends.
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


LupusPoopus
New Member


Date Joined Aug 2009
Total Posts : 12
   Posted 8/8/2009 10:07 AM (GMT -7)   
Thank you for the welcome Lynnwood.

there were no politics or religion mentioned in my missing post. I was simply discussing how upset I was that Michael Jackson kept his story so personal. He could have brought light to the disease. I fear that people will now this as a disease for the weird and mentally disturbed... I'm going to go do a search for it. Maybe I mistakenly posted it elsewhere.

 

Katie aka Lupus Poopus 

Dx: Lupus, Hypothyroidism, Anxiety disorder, Bipolar,

Possibly misdiagnosis: Fibromialgia

Suspected: Sleep Apnea, Carpal Tunnel

No current medication

 

Quoted from about.com:
The majority of lupus patients lead normal lives. The worst adversary comes from within, when the patient loses hope, loses will, and gives in to frustration and depression.

 

We must all stay positive!


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/8/2009 7:34 PM (GMT -7)   
It wasn't me either.  I just saw this post now.  Sometimes the "internet ghost" will do crazy stuff smhair
 
Welcome to the forum Katie!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums

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