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Posted 3/12/2008 10:10 PM (GMT 0)
Hi I'm new, to this site and to lupus. I am a thirty year old mom of five who is completely overwhelmed by what is happening to me. I don't know where to start. Honesty, I think I've had lupus since my mid 20's. It wasn't until the birth of my last son that things got so out of hand I could not simply blame all the things wrong with me on stupid stuff. I'm scared. I realize lupus affects each person different, and there isn't anything deffinative I can find on the web that tells me what to expect. I know I have SLE and it has affected my central nervous system, and my kidneys (according to a neurologist and an internist)and I am ultra sensitive to UV light (this sucks cuz I am an outdoor person)... and I know how I fell right now... like crap, Other than that... I do not know what to expect. I know all about the neurology crud cuz I've spent the last eight months in a neurologist office, but I am just now getting to a Rhuemy. I have an appointment with a Rhuemy on Friday...a really good one supposedly... Where do I begin to research all of this? Where do I learn about the medications and their side effects... or what I need to watch out for? Or how bad this is gonna get? How drastically is this going to change my life? Where do I find unbiased information about this crud? What should my family expect?

Just what the hell am I up against?

Post Edited (jynx) : 3/12/2008 4:44:47 PM (GMT-6)

Posted 3/12/2008 10:58 PM (GMT 0)
Awe geeze, I keep reading on this fourm and everywhere else... and it seems that everyone is having to fight for the care they deserve.

man. i am not up for a fight...???

there is a woman here going to have a baby... i just had my son 8 months ago and i had to fight tooth and nail to get someone to listen to me. i knew something was wrong and NO ONE was listening to me. Aaron came two months early.... unnecessarily... because i couldn't get someone to listen. i am not a first time mom either... i have five kids... i know what carrying a baby is *supposed* to feel like. i think her name is rose?? if you happen to read this rose, please don't give up fighting for your baby. you know your body best. so you have family somewhere else you can stay with and be seen by another hospital until this little one is born? i too was limited on where i could have aaron because of how early he came. heck i live in ohio... university of cincinnati hospital is good, and if your baby came early it could you right down the street to children's hospital.... i'm not sure where you are at...

geeze. i keep reading all these forums online, and all these personal web pages of people with lupus... and everyone is struggling to get someone to listen... to get the care the need... why is getting someone to treat lupus so difficult?? if you had cancer, you could find help just about anwhere and no on would deny it was life threating/altering... nor would they deny the pain you are in. so why are lupus patients so different?? i don't get it. why are all these caregivers not listening to lupus ppl? man, we seriously need a public poster child from hollywood, or something, to bring awareness and research for this crap to the forefront of everyones attention!
Posted 3/13/2008 12:09 AM (GMT 0)
Hi Jynx and welcome! I am sorry to hear you've been having health problems for so long. The best place to start looking is here at Healing well, there is a post called resources. Another good site is https://www.lupus.org , those are good places to start. Of course you will learn a lot by hanging out here and getting to know everyone. Lupus is different for everyone but there is bound to be someone here that shares some of your symptoms.

I hope your Rheumy is a good one and that your visit goes well. I know for me it took over a year to dx although I started having symptoms when I was a teen and I've seen 3 rheumy's. Some are not up to date on lupus therefore looks at things a lot differently. You have to remember lupus is hard to dx, it's like a big puzzle the doctor has to piece together over time and if your labs aren't positive it only takes more time, unless you have a great rheumy that knows to look in the gray area too. Make a list of all of your questions and symptoms and talk to your doctor about each one of them, on a first visit the doc should take a lot of time with you, mine took 1 1/2 hours with me on the first visit and at least an hour each time I see her, which is every 4 months.

Are you on any meds to treat your lupus?

Hang in there and don't panic, don't expect the worse wait and see how your appt goes. Feel free to ask more questions. I am sure there will be others along shortly to offer some great advise! Take care
Posted 3/13/2008 12:42 AM (GMT 0)
no i am not on any meds yet, though i think that will change on friday. i've researched my rheumy, and he is with the clevland clinic in ohio... supposedly that is one of the top two hospitals in the US? soo.... i think i will get an answer this time. i have to drive four hours to get there... i'm not sure how i'm going to handle the drive. I also have another appt with a local rhumey in april. i went ahead and scheduled that one because the waiting list to see a rhumey is sooo long around here... i can't risk Dr. B not having an answer and then waiting to see another rhumey. things are getting worse really fast. if something isn't done i know i will end up in the hospital soon. i swell up pretty bad all over, but the sweeling is worse in my abdomen. i can gain 40 extra water pounds in an hour and loose in in 24. i'm overweight, but a "compact" overwieght kinda gal. no fat labs hanggin... if ya get my drift.. but i swell my stomach looks like a balloon and its swishy and pooches out over everything. ugh. its disgusting to look at. the swelling worsens as the day goes on or if i go outside into the sun... i've lost alot of muscle strength on my left side already... i can't tell hot from cold... i'm numb on my face hands and feet. my eyes feel like they are gonna buldge outa my head and they hurt. i ache alot. i have an abnormal sediment count in my blood work... kinda scary high... i have spells when i drink water i'll get sick then go to pee and i'm ok for about an hour... then i get sick again only to find i need to pee and peeing makes it better for a bit. it's a kinda nautious, swimming, viertigo, i'm gonna pass out feeling until i pee. i drink and i pee it out in less than a minute. its awful. i have a wierd rash alll over my body somedays. i get blisters/acnie that i've never ever had before on my cheeks that refuses to go away. i've passed out twice already in eight months. i can go on and on with my list. i think the doc's loose intrest after i list my first 10 symtpoms. oh, yah, the blister like sores in my nose drive me insane. blah. sorry to bore you with my list. i'm sure i've left out a few :oP oh yeah, i have a weird hard swollen spot on my left side around my hipbones, today it isnt soo bad, yesterday it was painfully excrutiating. blah blah blah :o) i just want to know... i just wanna know if i can live with this...
Posted 3/13/2008 4:28 AM (GMT 0)
Hi Jynx!! Welcome to the forum!! You've found a great place to share!! Don't despair sis. All the stories you read are al the frustrated people. The happy lupans with balanced meds don't post . . .they have a life!! LOL so keep in mind that the hard to treat and the undertreated are the ones who really spend a lot of time on-line. Hopefully when you get going on a good treatment plan you'll feel lots better. Each of us is really different and a flare can last a couple weeks or a VERY long time. From all you've listed above . . . I don't think you'll have any trouble getting aggressive treatment. I also live in Ohio and have a rheumy with the Cleve Clinic. He is great. I've had two appointments with him and so far so good. He's got me referred to a GI doc (also at the Clinic) who I just saw this week. So between them . . . I'm feeling pretty confident. DON"T despair. Don't waste a bit of your energy like that. It will sucK the life out of you. You WILL learn how to do this dance. When you feel a bit of energy DON't overdo. The first thing we learn with this disease is how to pace ourselves. When I'm flaring, the only housework that gets done are things that stack up (laundry, dishes and picking up the house). There are lots of good tips in the "Lupus Resources" thread (link in my signature). Keep us posted about your doctor visits!! Glad you found us!!! Blessings!
Posted 3/13/2008 11:48 AM (GMT 0)
jynx, I am on my 5th pregnancy and ironically this one is smoother than the other 4. I may be sick of fighting with idiots who call themselves doctors, but I know all too well what happens to premies- my brother was a premie and he will never be on his own, never hold a real job, never have a girlfriend let alone a wife. I actually said something to the one nurse at the high risk office who seems to have the guts to stand up for the patients and had the jerk been there she would have prevented him from seeing me. As it stands we are in wait and see mode because I am most definately pre-eclampsic. It is in the early stages but if it does not improve soon they will likely have to deliver me earlier than we would like. I have 3 weeks to go until I am 32 weeks and have the best NICU in my state at the hospital where I will deliver- 98% of babies born at 32 weeks there have absolutely NO long term issues from being born early. I have had a 35wk and a 36wk baby a decade ago and back then babies born at that point were usually fine and tended to go home within a week. I am shooting for 35 weeks but will do what I need to.

As to fighting for care, yes many of us do but you have a kidney specialist saying you have SLE so the chances of you having to fight are slim.
Posted 3/13/2008 8:45 PM (GMT 0)
Thanks guys for your support.

Pregnant Rose, I will keep you, your baby, and your family in my prayers. Aaron was my fifth precious one. He came early by two months at 4 pounds 2 ounces, he's a whopper of a boy now. 8 months an 25 1/2 pounds. His only issues has been feeding problems, The little bugger doesn't like textured food... and is really has alot of food allergies already. He lives on sweet taters and pears. ALOT of sweet taters and pears, finely blended, mind you...he's such a bugger! Aaron and Zoey (my two year old) were the OMG there is really something wrong with me indicators. My first three were easy, last two impossible. :o( I wish I could've had more.

If ya'll pass up a teal ford mini van at 4am on I-75 friday morning ya might wanna pull off to the side of the road... sleep deprived, sick to my tummy and no smokes.... i'm a fender bender waiting to happen :oP

blah. today sucks. everything hurts. the world is a spinnin tea cup and i don't have a seat buckle or a stop button.
Posted 3/13/2008 11:28 PM (GMT 0)
Jynx. . . that is a LONG drive in your condition. I hope you have a family member, friend or church budy that will make the drive with you. Please, please ask. Waiting for a detailed report on your first visit!! BTW: Attitude goes a long way with finding a good doctor. So I hope you aren't disheartened by all the doctor-bashing that happens here. Blessisngs!
Posted 3/14/2008 11:33 PM (GMT 0)
Hi Jynx,

   I just wanted to welcome you to the forum. The others had some great advice for you so nothing for me to add. I hope your appt goes well and you get the right treatment to help you feel better. Please take care and keep us updated. You will be in my thoughts and prayers.

                                                              Babs

Posted 3/15/2008 2:43 AM (GMT 0)

Hey Jynx...

Glad you found us - but sorry you had to.

There is so much great information here...but the best part (if you can call it that) is that everyone here can relate.  So - feel free to ask lots of questions, vent, whatever you need.  Honestly - I come here first when I have a question...to get feedback from everyone.

I live near Akron and have to travel sometimes for work...and most often end up in the Cincinnati area.  That is a long haul to Cleveland from Cincinnati...I feel for you.

Take care & let us know how things went.

~Kim

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