I’m having a…

GIRL! It was quite a shock, I was expecting another boy, but there was definitely no boy parts. Although she did have her legs crossed for a good while.

Here she is

IMG_0002

And this was our announcement yesterday.

announcementI am still in disbelief I think. I keep referring to her as him and my husband corrects me. Even since before I knew I was pregnant, my Benedict was talking about “baby sister” and he hasn’t stopped since. He knew this was a little girl.

Pregnancy wise it’s definitely not going to be an easy one (not that it ever is for me). My SPD is awful at the moment and I have very limited mobility. Today, I made the effort to go out the local home education group, it was the first time we’d been. There was no one there, I ended up walking across a field twice trying to figure out what was going on. Turns out they had the time wrong on their facebook page, sigh. We went home as it would have been too late for my husband ,who needed to go back to work. But by the time I got out the car and had to climb the stairs to my front door…well I couldn’t, and husband had to try to help by half lifting me. The pain is excruciating – and I’m only 17 weeks. I’m seeing an osteopath tomorrow, and hoping for some relief.

And of course, my gestational diabetes is in full swing and I’m trying to take it easy with walking around anyway with my cervix, but I have a toddler and it’s much harder than last time.

But it’s my autoimmune causing the worst issues. I’ve been pretty unwell throughout this pregnancy and developed Raynauds, but my rheumatologist (before dismissing me as ‘post viral’) ran some final blood tests when I was 14 weeks pregnant. Several antibodies came back positive, obviously my ANA is still high at 1:1280, but it has been for years, but also my anti ro and anti la antibodies came back positive, these antibodies show up in lupus and sjorens and in pregnancy they are a risk for causing neonatal lupus and complete heart block. Also I got a positive p-anca. The heart block is definitely worrying, it’s only a small risk – 2 to 5%, but it’s not a good one if it happens. I’m still waiting on discussing it all with my doctor and talking about monitoring the baby’s heart. It should be monitored by ultrasound weekly from 16 weeks, and if heart block is found then I need steroids throughout my pregnancy to try and reduce the severity. But should be is not the same as will be. My local healthcare is not well known for being proactive.

I knew my pregnancy wouldn’t be easy, but this confirms what I’d already thought – this is my last baby. Let’s hope we can get her to a good gestation (preferably full term) and healthy.

I’m feeling lots of little kicks, she is nowhere near as active as her brothers, even on her scans she looks calm and just chilling out, but I get some little kicks every couple of hours or so.

I love her so much already.

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Another pointless appointment

Long, whiny post. Just skip to the end for cute Benedict photos. 😉

I had hoped this would be a better appointment. After all this is a doctor experienced in autoimmune disorders…but it wasn’t. I tried to get through to him how 6 years of pain feels. How right now I hardly ever have any good days. How it hurts to even breath on bad days (especially while lying down). He was adamant that it couldn’t be lupus because “only” my ANA came back abnormal (twice). I have a highish titre of 1:460 – a significant finding, as although up to 10% of “healthy” people do have a positive ANA, less than 5% have one that high. And with my symptoms, so many of them classic autoimmune symptoms…I hoped he would listen. I told him about my extreme sun sensitivity, my facial rashes, the pain on inhalation, the joint pain – worse before my period, the extreme exhaustions, the confusion and disorientation after sun exposure especially, followed my flu-like symptoms for up to two weeks, the low grade fevers, the oh so painful nasal ulcers and oral ulcers, the protein and blood in my urine for no reason, and he just refused to listen. Add into all that the very pprom I had with Gideon and preterm birth, and you have a pretty clear clinical history that something is wrong.

He decided to run one more antibody test, that he says will rule out lupus…even though it’s only positive in 30% of lupus patients. He said it wasn’t RA (rheumatoid arthritis, which I pretty much already guessed) and that because most of my blood work looks normal, I’m probably fine. Well, guess what? I’m not fine. I have the copy of my blood work and yes it does look pretty much OK to me too (although I was annoyed to see my ANA was 1:460, when I had been categorically told it was ‘weakly’ positive – a blatant lie). I would expect to see low white cell count or red cells, my White cell count was 6 during my severe flare last year and 8 last week. But you sometimes have to look beyond that and at the symptoms. If we look at the diagnostic criteria for lupus:

Malar Rash
Discoid Rash
Photosensitivity
Oral Ulsers
Arthritis
Serositis (pleuritis or pericarditis)
Renal Disorder (persistent Proteinuria in the urine or cellular casts)
Neurological disorder (seizures or psychosis)
Hematologic disorder (anemia, Leukopenia or lymphopenia on two or more occasions, thrombocytopenia
Immunologic disorder (positive LE cell preparation, abnormal anti-DNA or ANTI-Sm values, False postive VDRL (syphilis test)
Abnormal ANA Titre

“The american College of Rheumatology (ACR) an organization of doctors and associated health professionals who specialize in arthritis and related diseases of the bones, joints and muscles, has developed and refined a set of diagnostic criteria…if at least 4 of the 11 criteria develop at one time or individually over any period of observation, then the patient is likely to have SLE however, a diagnosis of SLE can be made in a patient having fewer than four of these symptoms.”

I can highlight four of these that I have or have had over the past few years.

Malar Rash (or more like a blush)
Photosensitivity
Oral ulcers
Arthritis
Persistent Proteinuria in the urine
Abnormal ANA Titre

I’m not asking directly for a diagnosis of lupus. I never even mentioned it as I know doctors hate you self diagnosing. But he had a big rant about people using the internet to self diagnosis and then dismissed all of my symptoms, focusing on my joint pain as common “rheumatic” pain. Perhaps it is. But it certainly doesn’t explain the rest of the symptoms.

He says he will see me again in three months unless those tests come back positive, which I doubt. He also took an xray of a dodgy shoulder I’ve had since a car accident a decade ago. One examination it was very “clicky” which it has been for a while.

So…what is my plan? I’m going to do the only things I can, take supplements such as fish oil, vitamins, eat healthier, take exercise when I am able, try to lose weight, and make the most of the good days – no matter how infrequent they are.

I don’t want to spend my life worrying and trying to figure all this out. I had a reasonable day the other day and took Benedict to softplay. I even climbed to the top of the play frame. And then remembered I had claustrophobia and had to keep calm so as not to freak out Benedict who was having a wonderful time. Then i came down the slide (luckily made for all ages – including adults). It was great and exhausting.

Anyway my point is that I need to just keep going, do my best, and hope that either I get better (it could happen) or I get a diagnosis (hmmm) or I get some treatment that works! Whatever is, simply is right now. I’ve done everything I can. I have nothing else to do.

Anyway here is Benedict in the dome, he loved it, but got scared after a few minutes:His dad is behind him by the way, he isn’t up there alone.

softplay

 

and because he has been so…spirited recently (read grumpy, I’m being nice) we took him a little fireman sam ride. It cheered him up.

fireman sam 3

 

I think he’s dropping that first nap. He has always been a nap fighter, and goes through phases of no napping every few weeks, but he hasn’t taken the morning nap in weeks now. So he’s tired, grumpy, fed up and incredibly whiny. If only he would take a long afternoon nap to compensate, but 30 minutes is hardly enough!

I have to think of a way to relax that doesn’t involve eating. I’m thinking of going back to my drawing maybe. Or actually keeping up with this blog 😉