Anyone with Lupus

[Guest guest]

Does anyone have Lupus that could share their experiences with me? I don't know

what to expect. Thanks,

[Guest guest]

Hi

 

My name is Miriam and I was diagnosed with lupus.  Before I tell you my

experince with lupus, there are a couple of things that I think I should point

out to you.  Lupus is a disease that varies in every individual and that means

that the lupus I have is very different from the one you have.  I know quite a

few people that have lupus and the symptoms I have are different from the ones I

have.  I know I'm being redundant but if I'm going to tell you about my lupus,

I do not want you to think that you will have the same symptoms I have.

 

When I was diagnosed with lupus, my mom accompanied me to the rheumatologist and

in the waiting area she decided to ask the other patients about their experinces

with lupus and she ended up crying (almost hysterically) becuase she thought I

would get everything simultaneouly.  I remeber three ladies describing their

symptoms and I  will tell you for sure that I have not gotten one of them.

 

I was diagnosed with lupus in march 2005 and RA in october 2006.  When I was

diagnosed with lupus, I was classifed as having lupus arthiritis and lupus

serositis (lining of lung was inflammed) and was hospitalized for this.  Three

months laters, I was hospitalized again for brain inflammation and my kidneys

were acting up. I was going to school when I was diagnosed and had to drop out,

but after my 2nd hospitalization, I waited 3 months and I went back to school

(sometimes full-time and sometimes part-time).  I experince quite a bit of

fatigue and headaches and have had TIA's (warning strokes).  Last year, lupus

severely attacked my kidneys, something called lupus nephritis.  I was

hospitalized and my doctors did a biopsy to check on the severity of the damage

my kidneys had.  Since then, I have flared up and have had pericarditis and now

I seem to have neurological problems.

 

You want to know what to expect and to be honest with you , you will never

know. Lupus will decide what it wants to attack and will most likely catch you

off guard.   I believe that the most helpful thing you can do for yourself is

to educate yourself in every possible way about lupus and know your body.  It

can be quite scary and daunting when you read about how lupus can wreck havoc

on the human body and that there is a possibility you might have to go through

it.

 

My lupus was under complete control for about a year and I was on minimal meds

to maintain it that way.  In december of 2009, i began experincing overwhelming

fatigue and my lymph nodes swelled quite a bit. I noticed that i was not peeing

enough and my knees and ankles were getting puffy.  Also, when I peed, my urine

would be very foamy.  I had read up on lupus so much that I new where I was

headed.  I was seeing my doctor every 3-4 months, but because of the symptoms I

was experiencing, I wasn't going to wait that long and decided to go see my

doctor in order to prevent further kidney damage.

 

Living with lupus makes life a little harder.  Your life turns into an

emotional and physical rollercoaster.  Lupus can cause you to loose control on

the physical part but definitely not the emotional one.  Lupus has made me mad

and depressed, but I don't let it last more than a few hours.  Your emotional

being is the greatest asset in combating this disease and the many symptoms that

it might throw at you.  Keep your spirits high even when you are feeling low

becuase of how crappy you might feel.  It definitely makes the day better.  Go

out and do stuff can your body lets you.  Communicate with your family and let

them know how you are feeling physically and that there are certain things you

can not do because of X reasons.  There will be people that will try to

understand and there will be people who are a**holes and will be rude to you. 

One thing about lupus is that it shows you the people that truly love you and

care for you. 

 

I apologize if I went on a tangent on certain subjects but I hope this helps you

out.  Seek knowledge and inner emotional strenght to fight lupus and whatever

else comes with it.

 

Hugs

 

Miriam

 

 

From: emily <eandsspivey@...>

Subject: [ ] Anyone with Lupus

Date: Sunday, March 27, 2011, 2:10 PM

 

Does anyone have Lupus that could share their experiences with me? I don't know

what to expect. Thanks,