Sometimes you just have a gut instinct. I'm a midwife and the thought of not having children of my own was just about unthinkable. It still is. But I've had to accept my reality. Just the same as I've had to accept Lupus (SLE), fibromyalgia and every other shitty diagnosis I've collected along the way.
I distract myself with lots of things. I write when i have the time and energy. This week I've done three overnight stays helping families teach their babies to sleep. I'm a baby sleep guru. And I'm feeling officially f***ed. I have a slightly potty mouth at times. That's just me. So I have used all my spoons up. I managed to get myself out of bed, dressed at 4pm and I'm sat on the couch blogging. It'll be a glass of red and an early night tonight!
I've learnt to give into it.
By miscarriage no 3 the hospital decided to investigate. They said next time I got pregnant I should take aspirin 100mg and Clexane sub cut injections. I was happy to try anything if it meant a pregnancy that went past 8 weeks.
My marriage was a bit rocky. My husband was being a b**tard. He didn't want kids but couldn't tell me. Yet we weren't using any contraception.
After miscarriage no 4 the hospital investigated and did a full blood screen unbeknownst to me. I thought I was going back to hospital for my results of my D&C and histopathology of the retained products of conception.
Instead I was told it was almost certain that I had Systemic Lupus Erythromatosis. My ANA was off the richter scale. It was 1:1280 and i had the speckled pattern that is consistent with SLE.
http://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Antinuclear_Antibodies_(ANA)/
It was the highest it could be. I had inflammatory markers. My ESR and CRP were raised.
I was stunned.
They told my husband that the first 5 years of my disease progression would give them an idea of my disease picture and what was likely to happen to me. My husband thought his life was over. It was almost like he was being given a death sentence, not me. He sat there shocked and silent. I felt numb. It was really hard to take in.
http://www.allergy.org.au/patients/autoimmunity/systemic-lupus-erythematosus-sle
I was referred to the complicated disease and pregnancy clinic to see a Rheumatologist.
http://www.lupusresearchinstitute.org/lupus-facts/lupus-diagnosis
At this time I had 5 of the 11 diagnostic signs of SLE.
The “Eleven Criteria”
- Malar rash: butterfly-shaped rash across cheeks and nose
- Discoid (skin) rash: raised red patches
- Photosensitivity: skin rash as result of unusual reaction to sunlight
- Mouth or nose ulcers: usually painless
- Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
- Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
- Neurologic disorder: seizures and/or psychosis
- Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
- Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
- Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
- Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.
I had no 1, 3, 4, 5, 9, 10 and 11. Seven of the eleven criteria. I also had anti Ro (SSA) which can cause heart block in your babies. Just great.
http://goo.gl/M0VwSZ
http://goo.gl/XXLj32
And I had the anti-cardiolipin antibodies.
http://www.hughes-syndrome.org/about-hughes-syndrome/what-are-the-symptoms.php#.Uz5hGF55i3U
The roller coaster had arrived.
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