Another year on and being grateful

Hello peeps out there!

It's another year on and I thought it was time to say hello to my blog again! Life has been busy and the months have gone by.

I'm still in remission which is most excellent. I'm grateful, very grateful that I'm here. I'm not taking it for granted. I don't think you ever do when you've been in a deep dark hole you'd thought you'd never get out of.

It's Winter now in OZ and joint issues are always much worse at this time of year. The tin man has resurfaced yet again. After an hour of getting up I move much more freely.

I'm very conscious to keep myself warm, lots of layers and always socks. My hands are freezing cold as I write. I think it's time to put gloves on even to type! Gloves on but it makes typing much more tricky!! You can't use the track pad. Doh!! Irritating.

Health wise there's a couple of new challenges that I didn't invite along. My reflux has flared and I'm now on maximum meds for that. The irony of this is I'm such a foodie. I often wonder what will happen longterm. Will I end up with a feeding tube in my stomach or a central line and TPN (Total Parenteral Nutrition)? I think it's hard to have all this and not wonder where you'll end up as you get older. I try not to dwell on it as It's too depressing but now and then I dare to go there.

Something else that invited itself along for a free ride is awful sacro-iliac pain. It's got so bad this month that I can't bend over to feed my 3 crazy cats. I can kneel on the floor and feed them but I can't bend. It's frustrating and painful. Eventually I found a great solution, some catdishes from Alessi that have long cats tails as handles. Whoever created these is a genius :-)

Sometimes I politely ask my other half, Simon to feed them. He's very kind and will often do it. It's that first hour from getting out of bed that's particularly tricky. After an hour my flexibility improves.

It never crossed my mind that at age 48 I'd struggle to dress myself and put pants and socks on.

I've been reading too much Google (as I'm sure we/you all do) and decided that I've got AS (Ankylosing Spondylitis). I've got to go for an Xray and some blood markers this week. I'd rather know if it is this or not. Luckily my Rheumy agreed it was a good thing to rule out and she didn't roll her eyes at me! The pain is just horrendous and nothing like I've had before. Having Lupus you always have pain, oh and Fibromyalgia. The 2 go hand in hand. I long for the day I don't mention the word pain and I'm not popping the painkillers. It won't happen. Suck it up Princess.

My Rheumy gave me 2 huge steroid injection s into my sacro-iliac. It helped but only for 2 days. And I screamed and cried like a baby when I had them!!

The weekend has been challenging so I'm a bit negative today which is rare for me. Usually I can poke fun at any situation. The 'no children' thing hit me this weekend. It arrived like a bolt from the blue. I was attending an event as a sponsor and I ended up talking to a heap of mums who all had young babies with them. I felt left out, the odd one out. I'd not felt this before and it was really hard.

Also all my friends on Facebook had kids that were attending their prom's. Again it hit me. I was never going to experience this. Lupus has robbed me of my chance to have children. My disease was so unstable that I've got 5 Angels waiting for me in heaven. My day job revolves around babies and children, oh the irony. Usually I can put my personal stuff aside but not this weekend. I sat in the bathroom last night and howled until I had no tears left. It did feel better but it's something that I have to deal with constantly. I get asked all the time if I have children and then that's often followed by more probing questions. 'Did I want children?', 'Would I adopt or foster?', 'I'd make such a great mum'. It's like they're trying to make my life better, more complete. But they can't. If I had a child would I even be able to have the energy to care for one properly? I think not. So my writing and my business has taken over from the baby I couldn't have. It's my big sadness and nothing ever can heal that weeping sore. I've become a mad cat lady with 3 crazy fur babies. Does it compensate? No, but it helps. Those that have children will never know how this feels and thank you for trying to make me better...but you can't.

It's important to acknowledge these things that we didn't plan for. It's not nice having to 'go there' but I know if I don't I'll never heal. As I said before I'm grateful that I'm here and what I've got in life. And I know none of us get everything. Acknowledge the pain and emotional shit, move on and smell the roses. And be grateful that you can get out of bed everyday even if some days you can't put your knickers on!!

Moving in and moving on and miscarriage no 5

It would have been rude to refuse such a kind offer! I'm referring to my new boyfriend, Simons' insistence that I move in with him. 

I was so 'off' men that it wasn't even funny. My trust had got up and gone. But I figured that I had to make a choice. My housemates were moving back to their respective countries. So it was either recruit new housemates and live like a perennial Bridget Jones or bite the bullet and just do it.

The litmus test was my tabby cat, Starsky. She'd taken to Simon immediately so it was a real no-brainer. When my recent blind date from a dating website had gone wrong, Starsky had pooped in the corner of Cathy's room. Yes, Starsky was one very astute cat. And Starsky was a real lady and never pooped anywhere apart from the litter tray.

So that was that. Simon said, 'Go to work, I'll pack all your stuff up, hire a van. You just go to work as per usual and when you come home it's all done and I'll look after you and Starsky.' Too good to be true? No not at all. As I said previously, I'm still there 8 and a bit years on! I told Simon all about my Lupus. Did he bolt and run for the hills? No, he didn't. He was a man and said no problem I'm here to look after you and Starsky. And he did and he has. He is a rare diamond. I owe my remission to Simon. He has believed in me and that belief has led to some amazing things.

I can't lie though. There have been a few blips (all health related) and they have been bad but I can't tell it all at once. I'm a writer. We like to string the suspense out a bit!!!

And here comes the thing that cascaded the awful events that have happened to me.

Because I was nearly 40 and Simon was 43 we decided that we should try for a baby. It was something we had both been denied in our previous marriages. I knew it was risky and knowing what I know now would I have changed my mind. No, absolutely not.

I got pregnant easily and had the usual bleeding at 5-6 weeks that had characterised my previous pregnancies. The scans were A OK so I relaxed. Ten weeks came along and I was feeling amazing. I had an inner glow.

I had no reason to think anything would go wrong once I'd got to 12 weeks. I really thought I was home and dry. I went for my 12 week scan by myself as Simon was busy at work. Within minutes of getting on the examination couch I sensed something was badly wrong. My face had suddenly become very red that morning as well. There was no feral heart. The baby was dead. My blood pressure was sky high at 170/110. I was pre-eclamptic at 12 weeks. Holy F**K.

I screamed, I sobbed. The noises coming from my body were like a wounded wild animal. I was left to cry in a corridor for ages. There were no kind words, no tissue no comfort. Just awkwardness. The Dr was embarrassed. He didn't have a clue what to do with me or what to say. I'm a midwife and I've had to work with him since. Double awkward. Every time I see him I'm taken back to this day. It's still raw.

I was on Clexane and Aspirin and Prednisolone 20mg. It didn't make any difference. I was utterly bereft. Simon was really good. He was upset too. I knew then, that this was my very last chance. I was never going to become a mum.

My job involves helping mums and dads with their babies, helping them learn to sleep, feed and develop. It's confronting. I get asked, "Do you have children?" quite often. Mostly I reply, "Unfortunately it didn't happen for me. I'd have liked a few." It leaves my clients/parents feeling awkward. Some press the point and ask, "Why" or "What happened?" How do you package it up nicely and not make them feel awkward? Its difficult. I belong to a very big family. I have 21 cousins,  most have children, several. I've become very motivated with my career. It fills a big void in me. It's also why I write. It helps.

 

I've since asked an Obstetrician/Gynaecologist why it happened. She said it most likely my very unstable lupus. So not all of you will experience such a disaster. But some of you will. I think the Lupus together with the Antiphospholipid Antibodies/syndrome were the problem.

I'm now a mad cat lady. Some people say they're my children. I don't see it that way. Cats are lovely but they're not children. They're cats.