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Fibromyalgia & Lupus ForumsGeneral & SupportNew to group, daughter just diagnosed
02/17/2012 03:17 PM
JillAJaX
 
Posts: 1
New Member

Hi,

I just joined this group because my almost 21 year old daughter has been undergoing tests since November for an autoimmune disorder (high ANA 1/640, 2 false positive RPR's, speckled pattern on ANA). She saw a rheumatologist in early Feb and was told she likely either has lupus or Sjogren's. More tests were ordered (urinalysis and 8 viles of blood). Today my daughter went to see the ARNP at the primary MD's office for her second ear infection in less than 2 weeks. The Nurse Practitioner pulled up her recent blood work and up popped the results of the lupus testing. Although it hasn't been confirmed yet by the rheumatologist the nurse practitioner told my daughter that all the indicators are showing lupus. The news was not unexpected but it was still hard for my daughter to hear and we were not with her when she got the news as we thought we would get the results at the next rheumatology appt March 2. As the mother of a young woman with almost certainly lupus is there any advice you can give me and my husband in helping our daughter deal with this disease? We know it is manageable and we both work in health care so chronic diseases don't scare us but sometimes it's hard to be as supportive as we need to be be. Any advice or support would be greatly appreciated! I am also encouraging her to join some sort of support group.

Thanks!

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02/28/2012 05:43 PM  Top
starkeeper
 
Posts: 145
Member

My name is Dawn. I was diagnosed with Lupus when I was 17. Just support her and know that when she doesn't or can't do something it's not her fault. Try to research and find as much information as you can on it. Know that she is still her. My parents abandoned me after I was diagnosed and I had no support system due to agoraphobia. It was the hardest thing I have ever went through. Though I'm 29 now it still hurts that I have not heard from anyone in my family in over 4 years. Love her, and support her as much as you can. Sometimes offering to bring over dinner a night a week just so she doesn't have to can be the biggest relief.
Conditions: Type 1 Diabetic, Purchers Retinopathy, Legally Blind 07’, Chronic Pancreatitis 07’ with Malabsorbtion, Herniated Disc at C-7 07’, 3 fractures in spine upper, middle, lower, Fibromyalgia, and Cutaneous Lupus, Chronic Sinusitis, Plantar Fasciitis, Migraine Headaches, Anxiety Disorder, Severe Social Phobia, Seizures, Stroke 08’, Not all mental health issues listed.

Medications:
 Lyrica 100 mg in morning 150mg at night
 Zolpiderm 10 mg at night
 Omeprazole Dr 20mg 2 x @ day
 Camrese .15mg/0.03mg 1 tab once a day
 Tramadol 50 mg 1 tablet 2 x @ day
 Naproxen 500 mg 1 tablet 2 x @ day
 Sertraline HCL 50 mg 1 tablet at bedtime
 Pancreaze 21,000 units 2-6 with each meal 1-2 with each snack
 Fentanyl patch 100mcg Apply patch once every 60 hours
 Levemir pen 40 units at bedtime
 Humalog 4 units per 50 over 150 and 1 ui per 5 grams of carbs at meals
 Odansetron 4 mg 1 tab every 6 hours
 Losartan Potassium 100mg 1 tablet @ day
 Hydroxychloroquine 200 mg 2 tablets @ day
 Savella 25mg 2 times @ day
 Metaxalone 800 mg 1 tablet 3 times @ day
 Prochlorperazine 10mg 1 tablet 2 times @ day
 Metoclopramide 10mg 1 tablet 3 times @ day before meals
 Advair 250/50 1 puff 2 times @ day
 Pro-Air HFA Inhaler As needed
 Lorazepam 1 mg 1 tablet @ 12 hours
 Morphine Sulfate 100mg/5ml Soln – 1/2ml by mouth @ 2-4 hours as needed
 Albuterol Nebulizer 3 x @ day

Please note that I am not a doctor, psychiatrist, or psychologist. My opinions are personal only.

Please help me to get my surgery any little bit helps: http://www.youcaring.com/medical-fundraiser/Fighting-Chronic-Pancreatitis/26044

Resource for the Disabled : http://www.disabilityhelpsite.org/governmentbenefits.htm

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03/11/2012 08:50 PM  Top
Pandora74
Pandora74
 
Posts: 1985
Senior Member
I'm an Advocate

I think Dawn gave you great advice. I think as parents we want to just protect our children from all the bad things and when you have a disease like Lupus creep into your lives you have to face it and that is the only way. I know when I was diagnosed I appreciated little things that made me feel loved. My mom would come over and help with my laundry or dishes. She would make dinner and call to tell me she wanted me to come over. They are my neighbors so its not that bad. LOL. They will also be tough when I am falling into the dark side of Lupus. My mom once asked me, "Are you going to change out of your pajamas this week?" Looking back now it seems so funny but I was sick, tired, and just didn't want to face the world yet. Its a hard balance for our loved ones to let us know we are loved but to also be tough on us when they need to be. Our group will give you some great support as you go through this. Prayers to your family.

April

Yesterday I dared to Struggle. Today I dared to win- Bernadette Devlin
When you get to the end of your rope, tie a knot and hang on-Anonymous
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