New here! Struggling with SLE

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Npierce1122
New Member


Date Joined May 2014
Total Posts : 2
   Posted 5/26/2014 10:53 PM (GMT -6)   
Hi i am new to the group. I am a 27 year old female recently diagnosed with lupus. I had my sweet baby boy back in march of 2013 which is when my joint pain started. I thought i was just having a hard time recovering from child birth and exhaustion from having a newborn. Finally in December of 2013 I went to an urgent care facility where this awesome doctor randomly drew an ANA test. It came back off the charts at 5120! So that set me down the rhuemy/autoimmune path. They did further labs that solidified the lupus diagnoses. I have a very high anti-DNA number, high sed rate, low vitamin d. They started plaquelinel, Vit D 50,000 and prednisone and sent me to the kidney doctor because I had protein in my urine. After an ultra sound and 24 hour collection (soo fun!) they decided it's only trace protein and just needs to be monitored twice a year to make sure it doesn't get worse!! Yippee! I found a new rhuemy in March that I really like. He verified all my labs again and said I would be an excellent candidate for a trial study for an infusion drug call ezparth... Something. Well we spent two months trying to get me in the trial but the first time I got a sinus infection right before my start date so we had to start over and then the second time my liver enzymes shot up, got an ultrasound and my lover was inflamed so they would not allow me to be apart of the study. :( so back to the rhuemy last week. He retested liver enzymes after 3 weeks and they had gone back down so he prescribed Imuran. My biggest complaint is my joints. I have severe pain in my hands, wrists, knees and feet. With all the storm pressure recently it has flared up so bad! I struggle with hair loss, photosensitivty rash, severe fatigue, unexplained fevers and general crapty feeling. I realize I am lucky to get a quick diagnoses but am getting frustrated with how sick I still am. Between the prednisone weight gain and acne and the hair loss from the disease I barely recognize myself and hate the way I look. Meanwhile I chase around a 14 month old and try to work 3 days a week. I feel like I am barely surviving. I have good days but a lot of bad ones too. I just hate this! I know my husband gets tired of hearing about it. I am doing the best I can but feel like I am burning the candle at both ends. I can't gety numbers down or my pain under control. I am also bummed because they have told me not to have another baby for quite some time until my health is better. This turned into much more of a vent than an introduction but thanks for reading and any words of incouragment would be greatly appreciated!

Spunkymonkey
Regular Member


Date Joined May 2014
Total Posts : 31
   Posted 5/26/2014 11:09 PM (GMT -6)   
Hey there! Welcome to the forum. I'm sorry you are having so much joint pain, I am going down the diagnosis path now (I'm 19 year old female) I am hoping I can get a firm diagnosis so I know before having any kiddos ;) I'm not a very severe case although the last few days have been some of my hardest.

I understand where you are coming from when you say your husband is probably sick of hearing about it, Although I'm not dating or married my parents and brother are so ultra sensitive to me mentioning anything. My parents think i'm wasting my time trying to get a diagnosis and some help because they don't believe i'm sick. I'll briefly mention a rash or stomach pain and they get set off so I have to live a 'fake' life around them a lot of the time. Pretend I'm fine so they don't get upset.

I'm sure your little one is adorable, and I agree that its probably best to wait until you are feeling better to have another even though I know that's probably hard because you might want your kids close in age. I know I always wanted to have siblings closer to me in age but it's also nice to be your own person.

Welcome!
Maddi

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/27/2014 4:05 AM (GMT -6)   
Welcome,
Are you wearing sun protection? I've very photosensitive and I have to wear sun protective clothing, hat, gloves, and sunscreen.
Try taking bioten for your hair loss. My hair grew back curly from taking it.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Npierce1122
New Member


Date Joined May 2014
Total Posts : 2
   Posted 5/27/2014 8:39 AM (GMT -6)   
Thanks for the reply spunkymoney and couchtater! Spunky- I hope they get you all figured out soon and can start feeling better Soon! I was lucky for how quickly they diagnosed me once I sought a doctor. And I know it's for the best to wait on another child it just sucks being told you can't. I mean really I don't hVe the energy for another right now it just made me sad knowing I can't even if I wanted to but hopefully in a year or so we will be able to. I am sorry your family isn't as responsive as you would like. I think lots of times my husband doesn't know what to say. I just want to hear "I am sorry babe that must suck!!" He is starting to get better. I hope your family doe too. Couchtater - I just started loading up on sunscreen before going out for any length of time. My doctor told me this would happen but in a way I still can't believe I have this disease and am surprised when these new reactions happen but this last time the rash took 3 weeks to go away so I am not risking it again. I think the last time I was kind of testing the boundaries a bit, never again!

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 5/27/2014 10:37 AM (GMT -6)   
Sometimes it helps if we actually tell family members what we would love to hear - like the, "I'm sorry, that must suck" from your husband. Also giving the family a copy of this www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpoonTheory.pdf helps explain some of what we are going thru.

Cheers
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

LnghrnFan
New Member


Date Joined Apr 2013
Total Posts : 15
   Posted 5/27/2014 11:34 AM (GMT -6)   
I'm so sorry that your hurting, and you haven't been able to get this under control :( I'll be praying that your doctor is able to find the best treatment for you and that you will find peace and comfort in the days ahead. Blessings!

hannahp
Regular Member


Date Joined May 2014
Total Posts : 22
   Posted 5/27/2014 4:18 PM (GMT -6)   
Sorry.to hear your story my symptoms started before I got pregnant I had my first flare which doctors thought was an allergic reaction and my symptoms really started after I had my two children it's so hard isn't it being a mum and dealing with symptoms good and bad days to cope with. I'm always here to talk I'm going through a flare had a crapty day to hope u feel better soon x

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 5/27/2014 5:19 PM (GMT -6)   
Hi Npierce and welcome :)

I do what Lynnwood suggested with my husband. I tell him, "I need you to say this sucks!" he will smile and say "it doesn't just suck, it sucks eggs!" sometimes they don't know what we need, they don't know what to do or say. When I tell my hubby what I need he is happy to oblige, I make it easier for him :) no guessing required!!!

Hang in there, you will find lots of caring and supportive people here.
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss
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