Fighting Dystonia, Chronic Lyme, EDS Type 2 & more… any questions?

Posts tagged ‘Pregnancy announcement’

Three Becomes Four

As some of you may already be aware of from my other social media channels, we are delighted to announce that we are expecting our second child this summer. I had many concerns at the start of my pregnancy due to my previous poor experience in having my health insufficiently managed whilst I was pregnant with my son. This naturally left me with many worries as it was not an experience that I wish to repeat. My current GP is incredibly supportive and refreshingly up-to-date with his knowledge on my mix of conditions which has meant that so far *touch wood* although the pregnancy is complicated it has gone much smoother than we had expected.

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I decided to take a few steps back from my blog in the beginning months. My health was really not great and whilst normally I would process how this was impacting me by writing about my experience here I didn’t want to blog about the pregnancy until we were past the halfway point; nor did I want to write half stories. Over the next few weeks, I’ll be posting blogs reflecting on the different things I experienced in this time. I’ll be touching on being your own advocate to doctors, the emotional trauma/impact of going through surgery without anesthesia or pain relief, and acceptance when doctors tell you your the worse case they’ve seen but there’s nothing more they can do for you. The last few months have been easier than my first pregnancy yet extremely hard in their own way.

I’m currently awaiting the results of further testing as once again my cardiac problems have reared their ugly head. I spend most days with a resting heart rate of 130+. It’s uncomfortable, to put it mildly. We recently discovered that the type of EDS I was originally diagnosed with was incorrect and that I actually have Classical Ehlers-Danlos Syndrome which may explain my current cardiac complications. I have a few more tests to go before we know more.

This has been a very quick overview of the last few months which I apologize for, but there’s a whole series of posts coming soon.

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So This Is Happening…

So, this is happening…Due May 2017.

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As some of you may remember, a couple of months ago I blogged that I was off all my medications and was learning to cope without them. Many of you noticed that I was very vague with my answers as to why myself and my neurologist had made the decision to do such a thing. After all, I’m normally complaining about my treatment being administered late. At the end of the summer I had the biggest surprise when we found out that we are expecting our little boy! Whilst very exciting, this meant a frank discussion with my neurologist about the available treatment options now open to pregnant me. There have been very limited studies done on the medications that I take for my varying conditions in relation to the safety of them in pregnancy, so a decision was made for me to come off of all my treatments and we would judge where to go from there.

I am extremely lucky to have a wonderful neuro who doesn’t mind me/my local hospital inundating him with emails and phone calls as my body plays its usual tricks. Although my body has been misbehaving with varying spasms and dislocations, the pregnancy itself has been progressing well. Due to having a whole host of conditions that are on the rare side of things, I have been under the care of a specialist maternity unit. It’s been fascinating seeing how they respond and their treatment suggestions; and very positive, as for a change they understand one or two of my medical conditions.

Despite weeks of horrendous 24/7 sickness, a spell in the hospital due to my Dystonia going on the rampage and a whirlwind of further hospital appointments as my body learns new tricks, I have continued with my university studies and plan on continuing into my 3rd and final year after the baby makes his appearance.(Thank Goodness for a uni with a fabulous disability team and amazingly supportive lecturers).

I’m looking forward to blogging about Dystonia and Me’s, and bumps adventures.

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