Monday, March 28, 2011

who are the kids in this family

Over the weekend the three of us visited a new shop close by - stocking only Lego. We went in, not intending to buy anything, only look at what they have available. There were so many cool things in there!! Both my husband and I had to contain ourselves... My boy was also very excited, walking around and pointing excitedly at some of the boxes. We ended up leaving with a Lego toy box and two sets of Duplo. Back home we emptied the Duplo he already had into the box, and opened the one box to add to it. The nicer set - a Cars Duplo set with 3 cars and a "petrol station" has been left packed away for later. I am going to have to stay away from this shop!!

I have connected the CGMS to start basal testing. I hate inserting it so much, and the insertion device just never seems to work for me. Hope to start running tests tomorrow. This time round I really want to get it done quickly and really get my basal rates sorted. I have been using the bolus wizard on my pump, and I must admit that it has been working well - much better than I expected. I am anticipating some insulin to carb ratio changes and I am pretty sure I am compensating for incorrect basal rates with these. Will feel so much better one these are done, as it will mean that if I need to go onto any treatment for the sarcoidosis it will be easier to manage any changes.

Thursday, March 24, 2011

health update

I more often than not guess the carb content of my food, and take insulin based on this guess. I would say I have a fair idea of what my insulin to carb ratio is, but it is not perfect. Nevertheless I have managed over the past couple of years to keep a pretty stable HbA1C, and generally stable blood sugars. My only problem has been over treating lows at times, and over correcting highs. Sometimes those numbers just freak me out a bit, and I just want it fixed right then...
Because of the possibility of steroid treatment in future I was told to try using the Bolus Wizard on my pump, just to make things a bit easier when and if that time comes. I have been using it for a few days now, and so far so good. Still pretty stable numbers, but I still have not got it all properly worked out yet. Because of insulin resistance, mainly after my pregnancy I started metformin about 3 months ago - 500mg XR. I have just increased this to 1000mg, and also now waiting for this effect to kick in.
My appointment with the pulmonologist went well. He is a great doctor, and spent a lot of time with me. My lung function tests were all within range, except oxygen usage (but level not low enough for any concern). I had to do a TB test which will be "read" tomorrow, but there has been absolutely no reaction to the PPD - but the chances of TB was low anyway. He confirmed my diagnosis, and said that the swelling in my lungs are generally only caused by three things - sarcoidosis, TB, or lymphoma. With the other symptoms I have experienced over the past few months he is about 95% certain of the sarcoid diagnosis. TB will now be "ruled out", but the only way now to rule out lymphoma, and get a 100% diagnosis would be a lung biopsy, which he does not suggest at this point (unless I feel I want to do it now). If it were cancer it is highly unlikely that my parotid gland swelling would have started to clear with no medication, and it very rarely / never presents with the facial palsy I had. I also lack a few other more common lymphoma symptoms.
So for now no treatment. I need to see the ophthalmologist in a couple of weeks to check on the swelling in my eyes, then I will see the pulmonologist again. If my sense of smell has not improved by then I will immediately start steroids. If it has improved we will wait another month at which time I will have another lung x-ray, lung function tests, and more blood tests to see the progression of the sarcoidosis.
I feel quite relieved at having a diagnosis, but of course I do feel a little let down by my body. There does not seem to be any link between sarcoidosis and Type 1 Diabetes, and I also know of no family that have sarcoidosis. However, sarcoidosis is an immune-type disorder, so it has that in common with Type 1 Diabetes. Seems as though my immune system was just not happy enough with only my pancreas ...

Saturday, March 19, 2011


I have never been the type of person who shared a lot of intimate or personal details about myself, or any deep feelings etc. I can't really think of any particular reason for this - I don't recall any situations where I was deeply hurt because of this. I guess I am just not that type of person. I have had many close friends during the years, some who I am still in some contact with, some from whom I guess could be said I have moved on from, a couple I know I can count on no matter when last it is we spoke. I do not have a lot of friends, my time is generally spent with my family (meaning my husband and child) and a few friends. Seems also I have the knack to become friends with people who either live really far, or who move away at some point. My husband is very similar. There are times I wish it were different, but mostly I am happy and it does not bother me.

At the end of last year I started sessions with a life coach - mainly for work, but obviously my personal life is also a big part of our discussions. Actually most of our sessions up to now has focused on personal issues rather than being solely work focussed. From the start it has been hard, because I find it so hard to share or talk about certain things. Some of the sessions have been great though, and often she makes comments or observations about me that are spot on. Recently we had a session after some time, and following the health issues I have had. When I go into these sessions I always "tread lightly", I am the type of person that will never accidently share more than I want. (And if you have any secrets to share I can assure you that the chances of me breaking you trust is very slim, really it would never happen) She made such a true observation, that I use information to distance myself from things - so for instance when I was diagnosed with diabetes I gathered a load of information but used this to make it a separate entity in a way from me. That way I do not need to "feel". I have done this with the fertility treatments, and now I am doing it with the sarcoidosis diagnosis. Sometimes I feel that I do not have the right to feel, or that somehow I need to do something to earn that right or deserve it. Same with when I don't feel well, I tend to ignore it or try justify it somehow, and feel that I don't have the right to for instance feel tired. In a way - always put others first, and I could go on... It sounds odd I know, I mean why (and how) would someone need to earn the right to be sick...

I have had amazing experiences in my life, I have, and still do, love deeply, I have laughed so hard it hurt, and cried just as hard too. Sometimes I think that I am so afraid of rejection or hurt to become too close or share too much. But sometimes I think it is making me miss out on so much.

Thursday, March 17, 2011

finally... diagnosed

For now I don't have much to say, not about how I feel about all this, or anything for that matter.

My endo visit this morning was a relief of sorts. (Oh and my HbA1c was well within range, much better than I had anticipated... 6.1%) I spoke to him about all the symptoms I have had over the past couple of months and he, like me, felt that it could not all be "random". That they were all likely related. And the first thing He thought of was also what I had diagnosed myself with a couple of weeks back (thanks to hours of consulting with Dr Google...). I was sent for a lung x-ray to confirm, as well as a couple of blood tests. The chest x-ray points to sarcoidosis. I will be seeing a pulmonologist on Tuesday for lung function tests etc. And discussion of the next steps.

I don't know enough about this to really "feel" too much right now. Besides relief that finally I have an answer.

Tuesday, March 15, 2011

the big test

It really feels like forever since I last saw my endo. And to be honest, I would rather keep it that way for the moment.... My next appointment is on Thursday morning. Which means I need to do the dreaded HbA1C by tomorrow latest. For the past two years or so it has been great. When we decided to have the little guy I got those numbers in check. By the time I was pregnant it was about 6.5% I think (6.9% a month or so before), and since then I have not seen a number over 7%. And it felt really good - you get the result and the appointment just goes so much easier. I feel as though I need not explain anything, make excuses, or give long explanations about anything. But this past couple of months with everything that has been going on, diabetes control has taken a little bit of a back seat. So I have the perfect excuse, but I still feel judged based on that number, who am I kidding - I judge myself based on that number!

And on other thing A1C - a friend has just been classified as a "high glycator", which got me thinking about the test again. I really need to read up more about high and low glycators, as it seems this can have quite a significant impact on your result.

Thursday, March 10, 2011

sick days

What a week, or should I say few weeks!

The weekend away and wedding was wonderful. I wish we could have stayed a bit longer... It was so great being out of town for a few days. Unfortunately there was not really much time for relaxing, but we enjoyed the time there nonetheless.

So a bit of a health update... I am definitely improving, and I must add that it has been by far the longest few weeks of my life! I have some movement back in my mouth, although my smile is still completely lopsided. My speech has improved, but I still slur my words at night when I am tired. Some movement has returned in my cheek to - just slight, and it mainly twitches when I try to move it. My eye is basically shutting at night now, but still not blinking 100%, so I am still suffering a bit of dryness during the day. But I am so relieved! After seeing a few more doctors and having some blood tests done, it was established I never had mumps. The parotid gland swelling finally started going down at the end of last week. This has not yet fully recovered either.

And then yesterday I get the call that my boy is running a fever and not eating. When I collected him soon after they had tried feeding him more but he did not keep anything down. Back to the doctor we went (I think we need a frequent visitor card now or something!). I stayed home with him yesterday, and he seems much better today.

Wednesday, March 2, 2011

tantrums are here...

Where do kids learn the ins and out of tantrums? No, seriously, who teaches this to them??

My boy is starting to master the art of a tantrum. While we have not yet had any major blow outs, with arms-and-legs-flaying-screaming-on-the-floor sessions in public, we have had a few mini-tantrums at home. He does not get his way, body pulls stiff, if he is on the floor legs kicking, and a lot of time he tends to turn his back on you while doing this. It is SO hard not to laugh! I am just hoping that we will be spared the embarrassing public ones :)

He is getting busier and more active by the day - if that is even possible! 2 blue knocks on the forehead to prove it, and last night he ran, slipped, and again hit his head full on. Poor baby.. But that does not deter him or stop him in any way. Once the crying is over he just continues whatever it was he was doing before.

This weekend we have a family wedding out of town. I am looking forward to it as we decided to spend the whole weekend away. Got a dress and everything sorted for the wedding, and even had a cut and colour over the past weekend. Really that was to make me feel a little better because of my chipmunk face and half a smile which I am still dealing with.... Hope I don't look to weird on the photos!