I know this is alot to put out there, but trust me that it's not 1/100 of what all we've been going through. I so appreciate anyone hanging in here with me through this.
My name is Kim, and I'm here as the loved one for someone living with autoimmune dysfunctions...now looking at lupus as well. I'm 45 and my daughter turned 21 this past November. I'm the grandmom of two and am a site co-administrator of a very large mental health online support community.
My daughter was always different. She always had strange/different illnesses and problems. She started her period at nine, had patches of gray hair by eleven and was built like a mature woman, as well as strange pains, illnesses, etc.
When she started her period and shortly after things really ramped up. After her grandmother's passing at 15, all heck broke loose physically and as a result, some emotionally.
Along with all her different problems, she started with a couple of different weird rashes at 16 and started having these "episodes" that she didn't tell me about
until she was 18. One rash was at the base of her neck and diagnosed as ringworm. It came and went over the next five years without anyone else getting it or any meds helping...not even her newborn baby getting it. She's always had the red cheeks...always. The other rash was very scary. She would itch really bad at times and blood would literally pool under the skin...once it was so bad on her belly that I couldn't hide my horror when she showed me. We later came to find out that this correlated with the times that her liver was inflamed.
Just after her 19th b'day she found out she was pregnant...while on the pill. At her first OB appt. they asked about
thyroid and we told them that she'd tested low a couple of times but not enough to indicate any type of treatment. They did testing and called us three days later with an appt. with an endocrinologist stating that she was severely hyperthyroid.
At that first appt she was dx'ed with Grave's Disease. Her liver was inflamed and she was very ill. He started her on meds but she was incredibly ill throughout the pregnancy and the dr. didn't even consider the baby until she was 8 months. He didn't think her body would maintain the pregnancy. Four weeks early the baby slowed significantly and it turned into an emergency C-section at which brought us an amazingly healthy, beautiful baby boy. That was 18 months ago today.
The endocrinologist said that my daughter's case was one for the books or journals. It was literally a race at the end to get the thyroid out. They had to put her on SSKI just to get her to the surgery and through it. It was very scary but she made it.
After getting things settled down there, things still weren't right.
She still had these "episodes" she told me about
where she'd have a weird thought and extreme nausea with weird vision and smell, etc. (I'd just assumed it was some weird side affect of the Grave's). I finally was able to witness these and realized there was a bit of time that she was "gone" and had zero memory of even being gone. During these times she'd do very basic functions or nothing. I realized then that she was having some kind of absent seizure.
Nothing shows up on the EEG or the MRI...both are normal...but yet she's having dx'ed seizures. She also still gets the on-again-off-again ringworm-type rash at the base of her neck. She has mild to severe joint muscle pain. She gets sores on her privates (only twice) and in her nose (I don't know that they're actually sores. She says they don't hurt and almost look like blisters but aren't). She has all kinds of belly and chest pain. She has the rosy cheeks still. She gets swelling in her ankles. Her liver is inflamed for about
the seventh time. We don't know about
her kidneys at present, but they've been abnormal in urine as well. She has periods of time where she's just over-the-top emotionally...everything is so out of proportion for the given situation and she cries and rages. Now that has gotten some better with the prozac. Just today we had the second appt. with a hematologist because her WBC has been elevated for months now and continues to rise. He did a blood smear and said that there's an inflammatory process going on that the blood is responding to...probably autoimmune.
Her endocrinolgist did tests for both lupus and rheumatoid arthritis due to her multiple organ involvement but said they were both negative.
I know, however, that my daughter has lupus. We are to be referred to a rheumatologist soon. There aren't many close, but I'll travel to another state to get her answers. She's so tired of suffering with no answers. She feels crazy and disbelieved, BUT I BELIEVE HER. I know how she suffers and I'll move heaven and earth to find her answers and relief.
I've known for about
a year that she has lupus, but prayed that having her thyroid removed would clear everything up...knowing somewhere it wouldn't. She has just about
every symptom there is listed and some things that aren't but I suspect are symptoms that aren't as common and listed as such.
I just wanted to vent, guys. I need support while I try to find the strength to keep her going for herself and that precious miracle baby. The endo said there are no odds to say how she even got pregnant with him, let alone gave birth to a healthy baby. A miracle was sent to save my daughter's life...of that there's little doubt.
Any support, advice for a newbie, suggestions to say/tell dr or other things to look for, etc. would be great.
I'm so glad you're here. I know how blessed and comforting peer support is in times like this and I'm the one needing the support, shared experiences, the works right now.
To anyone who hung in for this, thank you. I look forward to responses and getting to know you and your stories. Don't hesitate to link anything for me that will help me get to know you. :)
Post Edited (Jessicas Mom) : 2/2/2009 7:13:54 PM (GMT-7)