Undifferentiated Connective Tissue Disease

And that, ladies and gentlemen is what I have. Yes, I do, after almost a decade, have a diagnosis. My latest rheumatolgist asked me enough questions, read through all my recent blood results and there it is. You can read up in it here UCTD. Basically, my antibody tests all show a connective diease (ANA, Anti RO, ANCA) and my symptoms are typical of a connective tissue disease (CTD). BUT I do not meet the necessary criteria for a diagnosis of any one CTD, like Lupus or Raynauds. Sometimes, people with UCTD will go onto develop full blown lupus or equivalent, but since it’s been…relatively stable it’s more likely it wont attack my organs in the same way Lupus does. Photosensitvity is very common with UCTD and that’s good to know.

The criteria are relatively straightfoward, a positive ANA on two occasions and symptoms suggesting UCTD…so really the diagnosis could have been made a long time ago, especially with the symptoms.

  • arthralgia (joint achiness);
  • arthritis (joints that are swollen and hot, often with redness of the overlying skin;
  • rashes, usually on the face, which can worsen due to sun exposure;
  • alopecia (hair loss);
  • Raynaud’s phenomenon (color changes in your hands and feet in response to cold);
  • oral ulcers (sores inside the mouth);
  • xerophthalmia (dryness of the eyes due to decreased tears);
  • xerostomia (dry mouth due to decreased saliva);
  • low-grade fever (usually under 100o f);
  • photosensitivity ( development of rashes or other symptoms after sun exposure).

I have everything apart from swelling of my joints. It’s annoying it took so long to diagnose, but here we are. My treatment of hydroxychloroquine is appropriate for UCTD too, so I’ve been told to increase my dose and she’ll see me in July.

Baby is doing really well, I’m 25 weeks now, no signs of heartblock, and she is leaving the danger period for that anyway. There is still a chance of neonatal lupus, but it’s small and we know to look out for it. She is measuring on target, and I’m getting scans every four weeks. I have a retest of my gestational diabetes at 28 weeks. I passed the last one so well, that I’m hoping for a similar result but the weight gain has been too fast this time.

Today, we went to Gwyrch Castle, a mostly derelict 19th Century ‘castle’. But it was really atmospheric there, such a shame it was in such a state. I actually did the entire thing in a wheelchair, my husband was exhausted. Fun though

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And here is a picture of little Joey.

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Happy Angel Day Gideon

4 years ago today, was the hardest day of my life. I had to say goodbye to my wonderful baby boy. We had only met 17 days before, but I felt as if I’d known him forever, and forever we will remember him. I know I think of him every single day of my life, some busy days go by and I realise I haven’t thought of him, but he will be the last thought as I close my eyes at night. My angel. As I look over at Benedict sleeping, I think of Gideon, so far away, and I remember all the time we spent together. I am proud to be his Mama.

Today, we went to the Seaquarium – I went by wheelchair as I’m 21 weeks and it’s a scary time, plus my SPD is very severe. Benedict loved the Sea Lions but was a bit uncertain about jellyfish and sharks (because he knows that they can hurt from Octonauts). Then we decided on the spur of the moment to take him on some rides on the little fun fair along the promenade. He went on a helter skelter and a little rollercoaster with his daddy, and then we had chips at a little cafe. He thought it was all brilliant, but he still said he loved the Sea Lions best.

Overall, it was an enjoyable but quite a hard day, I felt close to tears sometimes, but we had a lovely time and we released a balloon at the beach . When we got home I made gluten and dairy free ice cream brownie cake, Benedict sang happy birthday, I did suggest angel day, but he knows birthday, so we sang that.

There are some pictures but my phone isn’t allowing me to access them, so I’ll add them another time.

Happy Easter

I’m 20 weeks today. So half way (or more than halfway as I doubt i’ll go full term). It is also Easter Sunday and so I made Benedict an Easter Egg hunt, he searched around the garden for things, mainly small sweets and an Easter egg and chocolate bunny. but he preferred the stickers, he doesn’t eat many sweets or much chocolate, when he does he only has a bite or two. He had a good day in the garden with daddy and Nana, while they did gardening, I cannot do much of course, so I knitted. A blanket for this little girl. I can’t knit anything more than a blanket at the moment, but I need to relax a bit, so I’m knitting a sampler blanket.

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I have my anatomy scan  on Thursday, and an appointment at the high risk clinic on Wednesday. It was meant to be the diabetic clinic, but i did my GTT on Thursday morning and I tested my own blood after the two hours and it was only 5.1!! Which is amazing, so I think somehow I passed! No diabetes. At least for now, but by the time they took it it was over 20 minutes, and 5 stabs later. Plus a long walk to find a better phlebotomist. Silly veins.

But I do have the anti ro to consider, and baby girl needs monitoring for heart problems. I’m just glad I have my own doppler to keep an eye on her heartrate, because due a “mix-up” with my rheumatologist, I’ve been unmonitored. My rheumy wrote to my GP and told them my tests were all negative. My consultant checked for me, and my anti ro is positive, my ANA is 1:1280 and I have p-anca. So, hardly negative, so I’m hoping to see a better rheumy as a matter of urgency.

The anti ro can cause heartblock, so I’m monitoring my baby for bradycardia daily. Autoimmune wise I’ve not been well this pregnancy, better than not in pregnancy but I’ve felt a persistent low level flare, and of course the sun doesn’t help. I just need to get another 17 weeks and I baby can be safely here.

a link about Anti ro for those interested. It doesn’t mean i have SLE (lupus) for definite, but with the ANA and my symptoms, it seems a fairly straightforward diagnosis.

And here is a nice photo of the fog tonight. It’s very creepy indeed, I can’t even see the ocean from my window.

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Happy 4th Birthday to my Gideon

On 30th March, my wonderful little angel would have been 4 years old. If he was going to be traditional schooled, he would have been going this September. I think he would have been a very excitable little boy running around, playing with Benedict, causing chaos and filling my house with noise and laughter.

But he’s an angel. I don’t know what he looks like, or anything about him. I can only dream of what it would be like to see him again, and try to remember every tiny detail of his little body and face. I can only imagine the kind of boy he would have been and how different our family would have been if he had survived.

I made him a cake. An owl cake that Benedict chose from pinterest.

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We usually release a balloon on our local beach, but apparently holding onto a balloon was too difficult for my husband and he lost it before we got it back to the car from the shop. So no balloon release today, it breaks my heart. I know Gideon doesn’t really mind, but I worry he might think we have forgotten, or not bothered with his balloon.

But we had cake. Benedict offered to blow out the candles for him, and we sang happy birthday. And next year, if all is well, we’ll do it all with a little girl too. With extra balloons. That I will hold onto.

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So happy birthday Giddy yums. Words cannot describe how much I miss you or how sad I feel that you cannot be here today. But you are always with us, and we will love you forever. You have sent us not one, but TWO beautiful rainbows and both of them will know all about you and celebrate your life with us.

Today, Benedict asked “where is Giddy?”

Dancing in the clouds, my love. He is dancing in the clouds.

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

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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.

15 weeks

I am 15 weeks today. My SPD is already really bad. I have to do nothing or risk not being able to even walk upstairs, the other day I walked around the play park with Benedict, I did not lift him (hubby was there) and I did not do much else, but it was enough to hurt my pelvis. I am planning on seeing an osteopath next time I get paid (in a week). I am hoping and hoping that she can do something otherwise it’s going to be a very painful pregnancy. But it’s my last and I’ll make it work, even if it means not leaving the house except on the weekends in a wheelchair.

I’ll be finding out the gender in a couple of weeks (they are making me wait until 17 weeks). I still don’t know, but Benedict is insisting “sister” but he lifts his own top and says “me has baby brother in tummy” lol.

We are getting close to that time when I pprom’d with Gideon. I knew it was around this time, but I have timehop and timehop yesterday said “wow that was a big needle” 4 years ago. I know that referred to my anti-d shot after I first sprung a leak, which means that pprom happened about tomorrow, the 2nd of March. I didn’t realise I was leaking amniotic fluid otherwise I would have rested of course. I can’t believe it’s been 4 years. My angel would be school age this year. It’s hard to believe that it’s been so long.

We found little Joey on the doppler easily yesterday, he was kicking it and swishing around. I’m already getting some movement. Just tiny swishy kicks, which is lovely and reassuring, I started getting them for sure right around 14 weeks, but I had some very light movements before that. My midwife will tell me it’s impossible of course (because of my weights) but I can tell baby movement from usual bowel stuff, and I felt it around 16 weeks with Gideon, and around this time with Benedict.

I should be failing my glucose tolerance test in about a week and a half. Not looking forward to that.

And Benedict has well and truly hit the terrible twos. in the shops today he just lay down and refused to get up. I tried all my usual gentle/respectful parenting methods and he still wouldn’t get up. So to my horror we had to pull him up kicking and screaming. Oh it was awful. We’ve had so many tantrums recently, and he’s not sleeping well. Trying to not get annoyed and stick to my well researched methods is quite difficult – it means no punishing him, but lots of limits and plenty of talking. Luckily he is quite good at talking and can usually tell me what he wants, but today he just said nothing.

Fun time to come I can tell you :) I wonder how he’ll cope with a little brother or sister? He does seem excited about it and keeps asking if Joey will play doll house with him.

Surprise!

I know it’s been a frightfully long time since I’ve written anything. Somehow time got away from me. There is one other reason of course…

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Meet “Joey” (as named by Benedict). I am 13 weeks and 4 days pregnant right now. I wasn’t actually trying to hide this, I even wrote several half blog posts but never got round to publishing them. i don’t know where the time goes these days. Hubby got a job working during the day,rather than nights, I’m working 3-4 hours a day from home and doing my degree and I never seem to stop.  And I’m adding a little person into my crazy house :D.

I am not known for my fertility, so when i was pregnant on the first month we decided to “sort of try” I was shocked, amazed and utterly in awe. I was expecting to wait at least a year. I felt the day of implantation and thought, “I wonder if that was implantation,” and decided it was impossible. At 9 days past ovulation I got a positive pregnancy test! I also had a dream about this little guy implanting on the left side of my uterus – and that is exactly where he/she is.

And even before I took a test, Benedict knew, he was chatting all month about babies. I didn’t even know why. He kept telling me about his “sister”. It would be amazing if this is his sister!

I had my cerclage on Tuesday, it went well enough but I woke up with all my muscles in my neck, jaw and stomach hurting. Very weird. I’m trying to relax as much as possible, but it is much harder this time, looking after a toddler.

I asked my doctor why my last cerclage “came undone” my previous cerclage doctor has retired, so she didn’t really know. She did seem surprised though, and discussed the likelihood of my irritable uterus being the cause, and if I do get contractions I need to get my cervix scanned to check for funneling and dilation as then I really DO need to stop.

Benedict is a whirlwind of excitement, learning and joy. So much energy and love. Today, he said to me “me make mama happy again” because I’d not been playing as much since surgery. Poor little guy. I can have entire conversations with him now, full sentences about all manner of things. He also tells people “me miss you” when he sees them. I love him so much.

He even talks about Gideon. He wanted to bring food to Gideon’s grave one visit, I had to explain that Gideon doesn’t need food, but it was very kind to offer.

And he is so excited about Joey. He asks all the time to see baby, or to play with baby, or hug baby. He is really sweet, of course he has his tantrums and we had to move him to his toddler bed as I can no longer lift him, so he does often get up in the night and wake me. But he is such a bundle of fun.

Well, hopefully I’ll update more soon. My gender scan is around in around 3 weeks.