Tag Archives: birthday

Gefiliciteerd Oma! & Update

Today is my Oma’s Birthday! I wish I could be there to wish her a Happy Birthday in person! So Oma, sending you lots of Happy Birthday thoughts across the oceans! Hartelijk Gefiliciteerd met je verjaardag Oma! Ik hou van jou!

I had a follow up appointment with my Rheumatologist yesterday. I was kinda hoping he would tell me to stay on the Prednisone until the Plaquenil has had more time to work because I really feel like I need it. The lower my dosage gets the sicker I start to feel again. I knew I was sick, but I didn’t realise just how sick I was till I started to feel normal again.

My thought processes are slowing again, which is so frustrating.. I am getting a foggy head and very forgetful. That had all stopped on the full dose of Prednisone and it was WONDERFUL to be thinking clearly! I have been making really stupid mistakes at work which is not going down very well. I am trying hard to do well but my brain just won’t work!!! The tiredness is coming back.. slowly.. but I am getting back to needing naps again on the weekend, which I hadn’t needed for a while. My joints are starting to hurt again and feel stiff, as well as my back and spine feeling sore and stiff especially in the mornings. My skin is getting soo itchy again. I am getting headaches again, which stopped on the full dose of prednisone. I had always dismissed the headaches as just one of those things.. but it looks like it is connected.

So back to the doc visit.. he wants me off the prednisone as it is not good long term. I know it isn’t.. because I have heard so much stuff about it, and I am gaining weight on it, getting high blood pressure, and my cholesterol has gone up on it. But I just FEEL so much better on it. So basically he wants me to keep tapering the dose, and wants me off it entirely by the time I see him again in 3mths.  He says I need to give the Plaquenil at least another 3mths which makes sense from what I have read as it apparently takes 3-6mths to work. He said if the Plaquenil is not working by then we can discuss other stronger immune suppressant drugs to try which by his expression was not an idea he was keen on, but at this point I don’t feel I have a choice. If the Plaquenil doesn’t work.. I just won’t be able to keep functioning the way I was. 

My blood work again was inconclusive, only showing inflamation again, still even with the prednisone. He said I obviously have some sort of systemic inflamatory disease.. but he just can’t tell me what. [thanks to my very unhelpful bloodwork!]

I can feel all the symptoms slowly coming back and it is an unpleasant reminder of how crappy I was feeling. I so don’t want to go back there as it is no way to live! Not to mention the fact I would not be holding on to my job much longer!!

So I am trying so very hard to think positive that the Plaquenil will start working it’s magic very soon… fingers crossed!

5 Years Ago Yesterday

We lost our darling son Jacob. Sometimes it feels like a lifetime ago, sometimes it feels like yesterday. For those who don’t know the story, he was 18wks when we found out he had a neural tube defect called anencephaly. We still don’t know why he was unlucky enough to have it, since I was taking pre-natals and folic acid and all the rest of it.

Basically it means his spine didn’t form correctly in the early weeks of the pregnancy and he was missing the top part of his head from the eyebrows up. He only had the lower part of his brain, the brain stem. He had zero chance of surival past birth so we chose to end the pregnancy early. It was a very hard decision but the one that was best for us as a family. We did not want to prolong the grief any longer than we had to. As it turned out and to our great relief, he ended up passing away before the proceedure.

Yesterday we had a birthday cake to celebrate his birthday. The kids had lots of questions about him and wanted to see photos. Even though they have never met him, they both miss him a lot as do we. Kyan was fascinated by the photos of him, at how tiny he was and what he looked like. He is still trying to get his head around the concept of not living anymore after you die though and was asking when he would come alive again. I think he is slowly starting to understand that he wont.

I wanted to do a layout about him last night but the kit I wanted to use isn’t finished yet! So it will have to wait a few more days till I can finish it up. Not really sure what I want to put on it yet…

It is all so bittersweet, because as much as we wish Jacob was still here, if he were, Kyan wouldn’t be.

Our Sweet 7 year old

I can hardly believe that Jasmine is now 7 years old! She had her birthday and birthday party on Saturday and had a wonderful time! She had lots of her friends come to her party as well as family and got so TOTALLY spoilt! She got lots of cool presents, High School Musical Singit game for the Wii, HSM Twister Moves, HSM roller blades, Play Makeup and the list goes on.

Can you tell there is a bit of a running theme on the High School Musical stuff, she LOVES High School Musical and is currently saving her pocket money for a Gabriella doll. We were so proud that despite the fact she got so totally spoilt she didn’t act spoilt at all, and at the end of the day wrote us this sweet little note on a piece of notepaper that she got with one of her presents. How cute is this!!

It really made our day to see how much she appreciated her day. It is so heart warming to see she doesn’t take it all for granted and while she got spoilt doesn’t act spoilt. 😉