Saturday, 5 September 2009

What's been going on?!!


After a long, unexplained absence I am back. Let me explain the reasons for my online disappearance...


Firstly, the mundane and practical reason I have not been able to visit my blog is that I have been without a computer for six weeks. A long story I won't bore you, which involved the breakdown of our laptop and investigations that revealed that it would be more expensive to repair than to replace blah, blah, blah. The long-and-the-short of it is that we finally have a new laptop up and running, although none of the data from our old one (we are working on this). It has been a nightmare as I've only been able to pick up emails sporadically and not able to visit livingwellwithlupus.org at all. Strangely, it felt like I'd lost one of my senses. Now I've finally had the chance to get back online, I have discovered a number of new messages and introductions from some fellow loopies out there who have stumbled across the site. Thank you so much. I often feel I am writing into the abyss so it is really motivating to have your support and to find that what I am writing means something to someone; to be reminded that I am not the only one trying to navigate the unpredictable minefield that is lupus. Now I am happily installed back in my little office which has stood empty for so long, I will be responding to each and every message so I hope you haven't given up and will be back to see.


Meanwhile life during this period has been far from uneventful. I discovered, mainly unexpectedly that I am pregnant - now 16 weeks (I told you the holiday in Italy was good) !!!!!!??????????!!!!!!!


Tony and I had planned to start a family after we got married in 2006, but thanks to lupus it was not to be. My doctors knew this was our wish, but until recently the medications controlling my symptoms meant that it was out of the question. Over the last six months they helped me juggle my medicines to find a way to make the prospect feasible (mainly by switching from MMF to Azathioprine and getting the steroids down as low as possible) which wasn't without its problems, but eventually worked. We'd all but convinced ourselves that after everything we'd been through over the last four years in particular, conception probably wasn't going to be straight forward but nature took its course far quicker and more easily than we'd expected, so we both went into shocked disbelief when the pregnancy test indicated positive. After four tests and confirmation from the GP we started to believe it may be true, but were scared of running away with the sheer wonderfulness of the possibility, because we knew matters relating to my health are rarely straight-forward. Sure enough week six into pregnancy the lupus decided to flare. Apparently this happens to approximately 30% of SLE patients, although I understand for many pregnancy also temporarily ‘cures’ symptoms. Things have been controlled and settled to some extent by an increase in steroids and generally I have been doing well. Fortunately, I do not suffer with certain key things that are known to complicate lupus pregnancies, such as sticky blood and so far I’ve been fortunate enough not to have had any kidney involvement. Anyway, regardless of how I am when we got to see the baby at the 12 week scan it certainly looked full of beans!


Managing pregnancy let alone new born babies when you have lupus is a whole new territory for me and is not something that our research explored (let’s be honest the fact that no respondents who were pregnant or with young babies volunteered to take part probably speaks volumes in itself!) so I guess learnings on this topic will be working progress. I have now stopped working entirely for the time being so have more time to dedicate to livingwellwithlups.org and plan more regular postings. So for now it’s a case of ‘so far, so good’, and we are touching an awful lot of wood and keeping fingers and toes crossed at all times.

10 comments:

Suzanne said...

Congratulations Daisy!!! I'm really pleased for you :o) I just wanted to say that you aren't writing into the abyss at all. i really love your blogs and want to thank you. you are able to put into words exactly how i'm feeling. This has helped me explain what i'm going through to my family & friends.

Poodle Soup said...

Congratulations Daisy!! What wonderful news. I am so relieved as I only just found your post a while ago and was worried that you may have had a serious flare or worse....glad to know you are ok and looking forward to your new adventures!!
Im living proof you can have a baby and Lupus. I was only diagnosed about say 3 months ago. But looking back I am positive I had Lupus flares for at least 3 years before hand and never realized what I had! I got pregnant last January and gave birth last October to my little baby boy. Remembering now I am sure I had a Lupus flare as you did around the same time of pregnancy: I got strange rashes, mouth sores and felt really weak and tired. I was also really really thirsty and my mouth and lips got really swollen and sore, the rest of my pregnancy was a beautiful breeze even though I was on no medication (hence having no idea I had Lupus). After I gave birth I believe I had another flare, got a weird butterfly rash on my arms and felt really weak and sick, I had much trouble breastfeeding as I had such limited milk, thinking al of this was just part of being a new Mum I didnt do anything about it. I then got so weak and sick and also contracted the CMV virus a few months later, this ended me up in hospital and finally finding out what was wrong with me all these years....LUPUS!! Anyhoo, cutting a long story short, I was finally diagnosed with SLE, am on Prednisone thats being lowered every month, going through Chemotherapy to try and kick the immune system into control and finally feel great!! I believe all of this wouldnt of happened if I was diagnosed sooner but am just grateful my pregnancy had no complications and my baby was fine and is as fit as a fizzle. Its sounds weird but am so relieved to be diagnosed. I have more energy and am managing being a Mum with Lupus really well. It can be done!! Im wishing you all the best and any help or advice, back up support you need from one Loopy Mum to another :)
Yay and congrats again!!
V
xoxox

Daisy Seale-Barnes said...

Thanks Suzanne. I am really glad that you find the blog useful.

I find explaining how you feel to others one of the hardest things. It's nice to hear from people who understand.

Keep in touch (and feel free to add anything you learn / pointers that you can as extra ideas help me loads!)

Daisy

Daisy Seale-Barnes said...

Hi V

I am so glad you are still there. I was really touched when I read your last message - my heart went straight out to you because it sounded like you had just come through a very nasty phase, and in light of my current situation I was also immediately interested when you said you had just given birth. It is really reassuring to me to hear your little boy is doing well and you are finding a way of being a successful 'loopy' Mum!

Isn't it wierd that diagnosis, rather than being a horrible shock, can actually come as the biggest relief? I felt the same way. It means suddenly things fall into place and odd things in your history begin to make sense. It also means you finally start getting the right treatments. From now on, be suspicious that lupus is the culprit whenever you get any odd health issue - it is amazing how much it is responsible for!

I have been warned that a flare after the baby is born is also likely. I was also interested to hear what you had to say on breast feeding. I am wondering if the meds I am on will cause problems with this? I am also concerned about energy levels as friends WITHOUT lupus are completely wacked by new babies, so am not sure how I'll get on!? It sounds like you are finding a way which is very encouraging.

I really hope your recovery continues (sounds like you are on some 'nasties' medicine-wise, but I console myself witht the thought that at least they ususally do the trick). Thanks for inspiring me.

Daisy

Soleilluna said...

Congratulations!!! I was diagnosed after the birth of my son dec. 2006 who is happy and healthy! Just came across your blog as I have started my own to raise lupus awareness in Alberta Canada (http://livinlifewithlupus.blogspot.com/) - I've enjoyed what I've read so far and even though I don't know you, I am gushing with your news of expecting. Congratulations again from another Lupus mother!

Soleilluna said...

Oh one more thing - I flared right after my son's birth - I breast fed for 3 weeks, but when I was put on steroids and immunosuppressants, I discontinued because I didn't want to take the risk. Just try to prepare for a flare after birth because like you said in your post just above, it's likely to happen. I was in the hospital for a month before I got discharged - it was hard, but with wonderful support and like you said, wonderful doctor's, it makes that transition a whole lot easier!

Anonymous said...

Hi Daisy and congratulations to you! I have only just discovered your blog and am enchanted by how well you write about your experience of lupus.

I have probably had lupus since my teens when I was (mis)diagnosed with Juvenile Arthritis and subsequently had kidney and liver failure. I then had skin problems and panic attacks/depression in my 20s which at that time I had no idea could have been related. I had my first baby at 33 with no particular problems but then had 2 miscarriages after which I had tremendous difficulty in getting pregnant again. However, I was helped by the wonderful people at the Recurrent Miscarriage Clinic at St Mary's and got pregnant with my daughter just before I turned 40. It was at that point that the various tests I had showed up all the markers for lupus plus sticky blood as you mentioned (I just had to take aspirin luckily). I was also told that I had the anti-Ro antibody which not only made me more prone to stillbirths but also made the baby more likely to have foetal heartblock - please do check to see if you have this antibody as it's best if the doctors are aware of this.

I have also trained as a breastfeeding counsellor as I really wanted to breastfeed my baby the second time as it hadn't worked for me first time round. Please get in touch with one of the voluntary groups who help mums with this as they will be able to give lots of useful advice and support - I trained with the Breastfeeding Network and they are totally up to date about which drugs you can safely feed with etc as well as practical advice about positioning etc. It makes a huge difference to have that support and I ended up feeding my little girl until she was 2 years, 3 months!

I do hope you have a smooth pregnancy and birth and that you don't flare afterwards. Being a mum is the most wonderful thing in the world!

Daisy Seale-Barnes said...

Thank you both so much for your encouragement and advice. I've taken on board all your comments which are SO helpful as this is my first ever pregnancy (there were times that I thought I'd never even get to this stage!) so I'm really excited and happy but obviously also keenly aware of the potential problems.

Please keep reading, posting and sending me your 'loopy Mum' input as I'm going to need it!!!

Daisy x

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