Wednesday, December 21, 2011

yay me

Still a few days before Christmas and my shopping is basically done! I cannot believe it, I am generally one if those crazy Christmas Eve shoppers, cursing the other people filling the shops and making things difficult for me... You know, why on earth would they leave it to the last possible day to do their shopping!

Presents have nearly all been wrapped too, with just two more left to do. I am home alone with my boy this week, and on Friday we all leave to spend Christmas with my folks. The week so far has been good - we have not really done too much, just some playing at home, at Granny's, at a friend, and then another outing to visit a friend after nap time today. Tomorrow another playdate planned, for which I am going to have to make this place look somewhat presentable - it is complete chaos...

Christmas has really snuck up on me this year. With the New Year just round the corner now I have been thinking about what I would like to do / achieve / change next year. I do not make resolutions - I have done them once or twice in the past (but a very long time ago), and they never lasted. But there are a few things I want to change next year, and I think those will be my goals for 2012.

Since a week or so after he had his grommets done, my boy has been talking up a storm. He suddenly started making a lot more, and longer, sentences. The granuloma seems to have cleared with the drops, and we have had no further issues with his ears again. I am amazed at his development at the moment. He is still very busy, and has not given me much time to relax over the past couple of days. Some time soon we will be shopping for bedding and a mattress as I am thinking of moving him to his big boy bed when we are back next week. Yesterday he managed to climb into his cot, with the side up! Getting out is a bit easier..... So I think we are ready.

I had my check-up with my pulmonologist yesterday and all is looking good. My lung function tests and lung x-ray show no change - a good thing, since my lung function tests had already improved earlier this year and is within the normal range, and while the X-ray still shows the sarcoidosis present in my lungs, things have not progressed. My SACE level has increased again slightly - it is now 42, with 50 being the upper limit. At diagnosis this level was 115, went down to 21 after steroids and methotrexate, then increased to 35 at my last test after I had been off the steroids for a couple of months. The doctor is not concerned about this as it is still within range, but I will continue methotrexate for another 4 months before we review again. SACE is a test used to see how active the sarcoidosis is, so obviously an increase is not wanted, but another test I had done showed I am vitamin D deficient, which he believes could indicate the sarcoidosis is not that active at the moment as people with sarcoidosis tend to store excess amounts of it.

My HbA1c reminded at 6.8 %, which I am pretty happy about. I attempted basal testing a couple of weeks ago, failed miserably, but did make a few changes. The changes seem to have worked, but since been on holiday I have been having lows about 2 hours post breakfast - not sure if I am just that relaxed, but I will be watching those in the next day or two. And likely connect a CGMS before going back to work.

Monday, December 5, 2011

the jolly season

I love this time of year. For me all that is missing is winter, and maybe even snow - the way I think this season is supposed to be.

I love everything about it - the tree, the carols, and even the movies. I am happy this time of year, but also a little sad at times that another year has passed. This year is no different I guess, although I have been looking forward to it more than other years. I am looking forward to spending some real quality time with my boy over the holidays, and enjoying Christmas with him.

I have just felt that I needed this year to end, with everything that has happened. I felt as though with the year coming to an end, so will all the issues in terms of health, and that next year may be a bit easier. Looking back at this year I seem to remember too much bad things, and in a way if I had to sum the year up it would go something like this:

Tired, swollen optical nerve, failed FET, loss of sense of smell, headaches, swollen parotid glands incorrectly diagnosed as mumps, cranial nerve VII palsy (diagnosed as Bell's Palsy), going to the doctor way too often, diagnosed with sarcoidosis based on SACE and chest x-ray showing lung involvement, second MRI (this time with contrast) showing swelling of right temporal lobe and the cribiform plate area, treatment started (steroids and methotrexate), waking up to my son's right year bleeding (granuloma), return of the ear issues, having to redo grommets, and then waking up this weekend to his left ear bleeding...

Now there has been some good in terms of the health too - my SACE levels has improved and I have been weaned of steroids completely, my HBA1c has gone back to below 7% (after increasing to above this for the first time since before falling pregnant).

I know it could be a lot worse, and I am not want to seek sympathy for anything that we or I have had to go through. I do not deny the fact that at times it is hard, but we cope, and honestly, it really could be a hell of a lot worse.

But... not for me, but for my boy - I hope that if this is a granuloma again it will be sorted before this year ends and that next year we will not need to deal with it again. It is scary waking to blood on a pillow that is coming from your son’s ear. I hope that the short term grommet in his left year does not get pushed out by the granuloma, and that it lasts a full year. I hope the long terms grommet stays put in his right ear and does the job it is there to do well. (He had to have a long term grommet inserted into this ear, as during the procedure it was discovered that his right drum had completely retracted - no air between the drum and middle ear).

And for me - a lung x-ray showing no worsening in my lungs in a couple of weeks, a good SACE level, and good lung functions test results (like the last time)

So that was a whole lot about health, and not much about the jolly season...

Monday, November 21, 2011

Grommets take 2, done

My boy had his second set of grommets inserted today. The procedure was quick, and he seems to be doing much better at the moment. He was quite out of it, with a whole screaming and crying match afterward, that felt as though it lasted for much longer than it probably did. He complained of some pain this afternoon, but ended up having quite a good nap. Will likely keep him home tomorrow, probably just the overprotective mom in me :). On another note... We did a 5k walk for diabetes on the weekend. MIT was fun. The walk has grown so much over the past few years. It is huge now! Lost my phone at some point though, which is quite a pain. Hope to have everything sorted and have a new one by the end of this week. And is it just me, or is this a bit weird.... For a "snack" after his procedure he got - a can of coke, a bowl of icecream, and a bowl of jelly. I was expecting a yoghurt and couple of biscuits, which it what he got last year, and what a friend got for her 4 year old a few weeks back. I think the "food " may have been meant for someone else - like perhaps someone having a tonsilectomy (there was a girl in the ward that had one done). Or else I am a bit disturbed that a hospital would have a catering company give a two year old a huge can of coke as a drink! And then considering I told him he is allergic to sodium benzoate too - which is in coke!

Thursday, November 17, 2011

world diabetes day - what I did

This year I attended a photo exhibition of what my doctor calls "the real heroes" of diabetes. I was asked if I would be willing to participate, and been eagerly anticipating Monday's opening. It went well, although seeing people looking at my picture made me feel really self conscious! I also had to write a short piece to accompany the picture - that was hard!

On Saturday we will be doing a 5km walk - I have been doing this walk since it started, and my husband has been walking with me since the second year. Last year my son joined us too. I enjoy doing the walk, and also knowing that I am surrounded by other people with diabetes. And spotting insulin pumps on others.

And maybe Saturday will motivate me a little more to get some basal testing done. I hooked up to my CGMS again last week, but just never got round to doing it. It is like a mental block - when I know I am going to be doing it and will not be able to eat, it is as though my body wil just need something! Or my BG will not cooperate entirely at the slot I think of doing. I am in desperate need of a little tweaking - I think, as I have not done this in quite some time and have made some basal changes...

Tuesday, November 8, 2011


You turned two just over a week ago. Two! I cannot believe how much you have grown and changed this past year. You run everywhere, and never sit still for long - except for the movie Cars. You are talking loads, and even making short little sentences. You love pointing things out to me, particularly cars, busses, trucks, and "man on motorbike". You are a real little boy - running and playing with cars, with bruises and scratches across your legs and dirty hands. I love you more than I ever thought possible.

Tuesday, October 25, 2011

kicking diabetes and sarcoid butt

It has been so long since I have updated...

Today I had my first pulmonologist check-up after stopping steroids completely about a month ago. Things are still looking good. My HbA1c has improved from 7.4% to 6.8%, but diabetes control has become so much easier again (not easy, just easier) since stopping the steroids. I hope that I can stay off them permanently. I am still on the Methotrexate, and will still be continuing with this. My SACE has increased slightly from 21 to 36, but the doctor did not seem too concerned about this. I will be doing a full visit again in two months, with lung function tests, X-Ray and blood tests (also particularly to test the level of Vit D), and if things are still looking good they will start to consider a reduction in the methotrexate. The only symptoms remaining now are loss of sense of smell, tiredness (I am still sleeping a lot more than before all this started), and slight weakness in the facial nerve.

I am so relieved that my HbA1c is going in the right direction again, as I tried so hard to get it below (and keep it there) before falling pregnant. I managed to do that, and keep it below 7 for the duration of my pregnancy, and only saw the increase to above 7 again after being on the steroids.

This week is very special for me, filled with special memories (and scary ones). On Friday my son turns 2. More on all that later.

My Endo's practice has arranged an exhibition for Diabetes month and asked whether I would participate. It included a photograph, and I have had to write a short few paragraphs to accompany it. The focus with mine is pregnancy and healthy baby with diabetes.

Friday, September 16, 2011

friday :)

I am so relieved that it is Friday after the week that I've had. Looking forward to a relaxing weekend with my boys, and hopefully getting out too...

The party is practically completely planned now. Venue has been booked, and cake has been ordered. I just need to sort out the invitations still and send them out. We are having the party on the Sunday after his birthday, and on his birthday (the Friday) we will likely have some cake and tea with the family. I really cannot believe that he is almost 2 - I probably say it way too much, but I am just amazed at how fast these past two years have gone.

He has been accepted at the other nursery school we applied to. In terms of location it is quite convenient - very close to where he currently is, and on the way to work for me (about halfway or so). Their opening times are slight different (shorter), but I am sure it will be manageable.

His vocabulary is growing daily now. He still repeats most of what we say, and sometimes (a lot...) surprises me with a new word or two. He is as stubborn as can be at times. He still loves playing with cars, and Cars is most definitely his favourite movie.

He will also be getting a nephew soon (from his dad’s side). Not sure what his name is yet, but he should arrive on my boy’s birthday. In a way it saddens me to think that they may likely not “grow up” together as that part of the family doesn’t spend that much time with us. I am actually a bit confused about how I am supposed to act, or how much I am supposed to do/ask/give etc., because of the nature of the relationship between us. I am not even sure when (and if) to visit after the baby arrives. (To put it in simple terms, she neither visited while I was in hospital nor after I was released or my boy came home. I hate having to put it that way – “I will do to them what they did to me”, because that will also be wrong.) I really wish I knew what to do and that it were easier. Family dynamics can just be so complicated to deal with!

Diabetes has been a bit difficult to control at times. Most of it probably due to weaning steroids, but I have also been sick in the past two weeks. I still have about two weeks of steroids left, then I go off it completely. I will see my pulmonologist and have some bloods drawn about a month later. Today I am seeing another doctor (it is crazy, another specialist, but hopefully it will be more of a routine visit than anything else).

Friday, August 26, 2011

weaning steroids and refusing vegetables

This week I started the next "step" in the steroids weaning process. I am now on 5mg on alternate days. Today is my second "steroid free" day. I had not really expected to be affected by it, but it turns out I was wrong. Blood glucose chaos... with me stressing about it a lot, because I was already anticipating the issues to come the following day and the next. Well, yesterday was not a good day either, and today is not going too much better either. Four more weeks or so to go before I stop them completely. I am really looking forward to that as at least then, after dealing with the "aftermath", things should be back to being a bit more stable again.

My boy is growing up so fast. He continuously repeats things we say, learning new things every day. He seems to have entered the toddler eating stage with a vengeance now - refusing vegetables, or eating it with great reluctance. One day this week he ate all the chicken on his place and demanded "More, More". We have had a few mornings of tears at the day care - breaks my heart every time.

Thursday, August 18, 2011

the wee wee

Yesterday I bought a potty - one that can be used as a stock standard potty, a step stool to reach the basin or be able to get onto the "proper toilet", and a removable seat which can be attached to the toilet. Up to now I have only had one that qualifies more as a travel potty - you are able to use it "on the floor" with little baggies, or as an attachment on the actual toilet. At first my boy did not like sitting on the real one. I did not push the issue, left the potty in the bathroom, and never tried again. Eventually he started putting 2 and 2 together. A couple of weeks ago he started pointing at it saying "wee wee". When it was bath time and he did it I would let him sit on it for a while. He has never actually done anything in it of course... He seemed real excited with his new, as he calls it, "wee wee" yesterday. Of course it was carried all around for some time, used to sit on in the lounge too, and opened and closed numerous times. He sat on it before his bath last night, and again this morning during a nappy change when he asked for it. I am sure we still have a very looooong road to travel, but it is exciting to be reaching this milestone. I have been told that boys take longer / start later / are more difficult than girls, so I guess we have our work cut out for us!

Thursday, August 11, 2011

rewarding bad behaviour

A recent blogpost by Blackhuff reminded me of something that happened a little while ago, which is slightly related to what she was discussing...

After picking my boy up from day care I decided to take him for a walk in the area before going home. We took a walk and when we got back to the car he was really unhappy – he is such an outdoor creature, just loves being outside all the time. So when I tried to put him back into his carseat he fought back – violently I might add! Just kept pulling his little body stiff and saying “no, no, no”, making it near impossible for me to tie him in. So, because I was in no hurry, I did not force him down immediately, but rather just tried to calm him down, and even reason with him. But of course, he wanted nothing of it.... Another mom pulled up behind me, and wanted my parking spot. I told her that I was going to be a while. She got out of her car and stared at me for a while and said that her daughter did the same (Her daughter is a little younger than C). This is the first time he has protested getting into his carseat, and I knew it was just because he wanted to be outside, so I told her this. She then asks why I don’t give him “something” – meaning a “treat” or bottle of sorts. To which I answered that I do not see the point as it is not that he wants (or needs for that matter) anything, he just does not want to get back in as he wants to be outside. She then adds that she “bribes” her daughter with “Flings” when he daughter does not want to get into the carseat.

Now first off – I do not have crisps or anything of the sort with me at all times to use for bribing. I discussed this later with my husband and a friend. I could not believe that people actually do this, actually I can, and she probably judged me quite a bit on my parenting “skills”. I will NEVER give him a treat in order for him to do something like get into his carseat. What is the point?? – so he will then get into his carseat and eat his snack. Then, next time he will use that behaviour to get a treat, right? I believe that doing so could teach him that behaving in a certain way will get him “rewarded”. And “rewarding” bad behaviour is not exactly something I would want to encourage, and I see this as doing exactly that.

I am pretty sure that at some point I will be faced with a situation where I will be doing exactly what I say I would never do, but I would not want this to become the norm. And I am glad that up to know I can confidently say that I have not yet “rewarded” bad behaviour.

Thursday, July 21, 2011

diabetes 1, me 0

Need a bit of a break from work stuff to think and get my head around things...

I am having a major afternoon blood glucose issue. Well, today and yesterday in particular. I noticed some afternoon spikes a little while ago, but they were minor compared to what I am currently experiencing, and seemed to "fix" itself after a few days.

Yesterday after lunch I did an infusion site change. 2 Hours after lunch I tested and was peaking higher than normal. I thought I may just have miscalculated my lunch bolus, and probably some of it had to do with the site change (I sometimes have a little bit of high issues after a site change). So I corrected and carried on as per normal. A little while later I tested again - and I was even higher. Now hovering just below 20. Not on, another bolus from the pump and continued with life. Then an hour or so later I tested again and still hovering way too close to the 20 mark - had dropped from 18odd to 17odd. So not enough of a drop according to me, especially not with the amount of rage bolussing I had been doing.... So I thought that maybe there is a problem with the site. So another rage bolus with syringe, and site change. This all of course caught up with me later the night....

This morning things were okay-ish. Lunch time I was a bit high, but nothing too serious. Had lunch, bolus, 2 hours later I am above 20!!Now I am going to admit to having a little treat after lunch too, so this may have had a little impact, but not possibly this big! So I assume there are some issues - basal and an I:C ratio likely. Which means a basal test needs to be done ASAP. This really is so frustrating at the moment!

And while on health issues... I saw the neuro yesterday and all is progressing well in terms of my facial movement. My smell has still not returned, and there seems to be a highly likelihood that it may not. But, steroids and methotrexate could both potentially affect smell, so there is still a chance that these drugs are also having an impact - I certainly hope so!

Tuesday, July 19, 2011

a toddler update

So what has happened in the last, oh, more than a month, since I have been here?

Well first off, my car was fixed, and thanks to the witness I was also paid my excess back.

The past month has seen us visiting the doctor numerous times, and also included one trip to the ER with my boy. Mostly because of colds / sinusitis, then conjunctivitis, and then an ear infection. After completing the second course of antibiotics, as well as the course of antibiotic ear drops we woke one morning to blood... So off to the ER we went early the morning and saw the ENT. Turns out he has/had a granuloma on the eardrum, and the grommet is also on its way out. The last of the drops was used this morning, so now I am just watching to see that everything has cleared up.

Despite all this he has been a happy and busy little guy. He is learning new things every day – it is just amazing! His speech is also developing. I realised recently that he actually knows a bit more word than I thought – he just does not use them that often. He still always seems to need to say the word “car” – by far his favourite word, toy, and object. Busses and bikes also feature way up there. Flowers are called “wowers”. He has learnt the power of the word “no”, but unfortunately for him I cannot always give in .

He is growing taller by the day – but I have no clue how tall he is now. I was actually looking around at some growth charts online to put up against the wall. He weighs about 12.2/3kg now – so not too heavy, by not too skinny either.

Still loves loves loves his food. And I have been lucky that he has not developed an aversion to vegetables. Loves peas (although it seems as though he calls most veggies peas). I am glad that I have not had too many feeding issues with him. He is also eating very well on his own.

He is definitely favouring his left hand – and I can even see this when he eats. He messes much less, and I even saw him using his left hand to guide his right hand with the spoon to his mouth once. He still swops between the two quite often. I notice for instance when he wants to wave and has something in his left hand he will swop hands in order to wave with his left.

We have been enjoying the freakishly clear days here, and taking full advantage of them over weekends. My boy just loves being outside so it has really been quite a blessing.

I cannot believe that soon he will be 2. I still have a few months left, but we have started thinking about what to do for his second birthday in October. The only thing I do know is that I want to get him a Cars cake – I will not be attempting to make this myself.

Daycare, Marcia, has not really been sorted out yet... We have enrolled at both the places I visited. At the one we have been placed on a waiting list, and to be honest I doubt we will be getting a place for next year. The other I am not sure of yet. I felt pretty confident after meeting with them that he should be getting a placement there, but I guess only time will tell.

Friday, May 27, 2011

crazy week

Thank goodness for Friday...

This has been one crazy week. I was involved in a car accident on Monday when I guy jumped a red traffic light. He turned right in front of me, and I was unable to stop in time. I was just so relieved it happened after I dropped my boy. Luckily I was not hurt. Now the week has been spent dealing with insurance issues, which are a huge pain! They have been very efficient, with the only outstanding issue now " placing blame". The other driver has, of course, denied fault. There was a witness, so now I am waiting for the insurance to contact me regarding his statement. Hopefully this will all work in my favour and I will get
excess back!

And my car.. In for repairs, with no idea when I still be getting it back! Apparently they are waiting for parts, and there have been major delays with this recently.

The rest of my week, uneventful. Had another awesome swimming lesson. He is enjoying them much now, and so am I. Our place is also finally on the market, so we will also be looking at new property a little more seriously now.

Thursday, May 19, 2011

nursery school decisions

I went to visit another nursery school today. I have only visited two so far, but don't really think I will be visiting much more (there one more possibility, but then that will be it). We have not really made a final decision yet, but so far will be applying at both I have visited, mainly because the first one is already full so we will be placed on a waiting list anyway. There was really not a lot of difference between the two I have visited so far, and I got a good feeling from them both. They are quite similar in terms of what they offer, but there is quite a difference in their monthly costs. Both of these are also substantially more expensive than our current place.

The main difference between the ones I am considering now and the current one is opening times. Moving him will mean adjusting my work hours, but this should not be too much of a problem. Also the one I visited today shuts for a full 4 weeks at the end of the year (I need to check on the other one as I forgot to ask how long that closing time is for).

While he is still able to stay on at the current place I feel I need to trust my gut. And my gut is telling me it is time to move. We have been very happy with the current place. Of course there were little issues, but then no place will ever be perfect, or do everything exactly the way you want it to be done. I also think they were a perfect place for the stage he has been in - baby to entering toddlerhood, but I would like a more structured environment with more focus on education from next year. The current place is new-ish, and was initially only going to take babies up to age 2, so he would have been moving next year anyway.... Only now they have started to expand (and in some ways I think they are expanding too fast...). I feel quite weird about moving him though - he has settled in so well there and has made friends and gets along with the staff. But I am sure he will settle in quite quickly at a new place also.

These decisions are so difficult, much harder than I thought they would be. Just so many things to consider. It amazes me when I talk to other moms and they are just not really aware of all this, or making any plans for their kids yet in terms of schooling etc. They just seem to take every day as it comes, while someone like me has already investigated proper schools and what we would like for him in terms of his education.

So now there are forms to be filled in and deposits to be paid. Then we wait...

Tuesday, May 17, 2011

aaargh temp basal

What a terrible day that could have been better if only I had been paying attention.... My temp 150% basal ended this morning, probably around 06:30. I did not reset it. At lunch I was high - not terribly high, but very high. I just chalked it up to miscalculating breakfast or something (even though I was pretty certain I didn't, and I had not tested after breakfast because of meetings). So I decided to have lunch anyway and just correct because I was hungry. Come 2 hours post lunch and I am now sky high. take correction and as the insulin is trickling in it dawns on me... Hopefully I will be back in range in a couple of hours. I just hate feeling this way!

I had all my blood tests done today in preparation of my appointment next week.

Coming up later this week - preschool decisions. Have another visit set up for Thursday morning. It has been a bit of an issue at the moment, with leaving the planning so late. I guess I was a bit relaxed since he can actually stay at the place he is at now. But, I need to trust my gut, and my gut is telling me to move him.

Monday, May 9, 2011

diabetes and sarcoid treatment

About 2 and a half weeks ago I started treatment for Sarcoidosis. The decision to start followed my second brain MRI (this time with contrast), which confirmed neuro sarcoidosis. It does not seem “too bad”, but my doctor wanted to get a neuro consult and start treatment immediately.

I started on 20mg prednisone per day for the first 10 days, and then reduced to 10mg. The effects on my blood sugar set in about 5 hours after taking my first dose. I increased my basal rate up to 150% gradually over two days and things seemed to settle there. But then a couple days later I started experiencing some lows around midnight, and had to start adjusting. The weird thing was that I still needed to run my basal at 150% for most of the day, but not at night. I reduced my rates, and strangely ended up on LESS insulin between about 10:00 and 02:00 than before the prednisone. I know this sounds a bit impossible, but things have seemed to be a bit more stable since. After reducing my dose to 10mg there were no real changes.

I am also on 15mg methotrexate per week. I have not experienced anything too bad related too this. I had slight cramping now and then a day or so after taking it. I noticed after the second dose that I was losing a bit more hair than normal, but nothing too bad. It was decided to add the methotrexate in order to keep the prednisone dose as low as possible. My doctor does not like prescribing it to women of child bearing age, or women who still want to have kids because of the possible side effects on fertility. But because of our fertility history this was really not an issue for me. I am also taking 5mg folic acid per day, along with a multi vitamin.

I have a couple of bruises on my legs, which I think is possibly because of the meds. Headaches are infrequent now. My facial movement has mostly returned – my smile is still a bit skew, and then I also don’t have full movement back around my eye. I am still without my sense of smell – which sometimes I think is a blessing in disguise. But I do miss it a lot. My taste is also still a bit altered.

I saw the neurologist who was happy with everything. I will now just monitor the improvement in my facial movement, and if in about another 4 weeks (6 weeks from my visit with him) there has not been much changes, I will go for a lumbar puncture. This will be mainly to determine whether the dosages are sufficient. I have a blood test in about 3 weeks – recheck my SACE level , and some other tests to see the effects of the methotrexate on my blood levels and liver. A week later I will another lung x-ray and lung functions done and see my pulmonologist for an update.

To be honest it all probably sounds a lot scarier than it is. Most of the time I do not feel sick. I feel tired a lot, but that is about it. And most of the time I am just glad that I got diagnosed in the end, because I realise it could have taken a lot longer than it took.

Thursday, May 5, 2011

an award and update

So much to update on, so little time....

I am back at work after a short holiday. The holiday, albeit short, was much needed and thoroughly enjoyed. We visited a small town outside the city for a few days, just chilling (and trying to keep warm, as it turned out to be freezing there due to the early snow....). I even fitted in a little Spa treatment!

It was so much fun being able to spend such a lot of time with my boy. He really is growing up fast now. 18 months... where did the time go?! He is an active little boy, running and hardly ever walking, climbing and jumping on anything, and talking all the time - even though he does not have too many words yet. He has become quite a lovable little guy, dishing out hugs and kisses to mom on demand most of the time. Cars are still his favourite toys, but he has starting enjoying paging through his books a lot more recently. And of course his favourite book is one with pictures of cars and truck in it! Feeding is still mostly an easy task, as he will practically eat anything. But of course anything that mom is eating is a hit right now.

I visited a preschool a couple of weeks ago. The visit went well, but unfortunately they have a waiting list for next year already. We will likely put his name on the list and see what happens toward the end of the year. I will also be contacting another preschool in the next week or so. He is still able to stay where he is now next year, but I am still of the opinion that we should move him.

Thank you Blackhuff for the Versatile Blogger award (it took me long enough!) So 7 things about me....
  • I am an online gamer... Few people know or would probably expect this. I do not play nearly as often as I did before having my son, but I still enjoy playing a lot.
  • I HATE shopping – absolutely detest it.
  • I grew up in a small town, but I always knew I would never be able to live there. I could not wait to finish school and get out of there.
  • I would not say I am addicted, but I do spend a large part of my day online.
  • I love reading. Finding time to read has been hard, but since getting my Kindle (Best Gift Ever!) I have started up again. Just really need to control myself – buying books is way too easy now!
  • I get along really well with my in laws ... yes, even my mother in law.
  • I do not like having my picture taken. I also do not generally take a lot of pictures. This does not include pictures of my son though – but lately he will not stay still enough to have decent ones taken!

Monday, April 11, 2011

on biting and swimming

Swimming is going swimmingly. My boy loves it, and so do I. In a way I wish there was some way I could juggle it to do lessons twice a week. Today he was such a cutie, laughing and eagerly trying to do all the activities.

Everything else with him has been great. Tomorrow he has his 18 month check up with the paed. I cannot believe we are almost there! He is such a social little guy too, and just loves going out. Even just a quick trip to the shops! He has made his first “two worded sentence”, which was really cute – “Car gone”. With hand movements to boot! He is such a boy – loving his cars, cars on the road gets him excited, and when he hears a plane or helicopter in the sky he gets even more excited!

We had our first little “day care incident” last week where he had bitten another boy. Luckily he did not bite hard and the mark did not stay too long. I have feared being on the “other side”, as a few weeks ago he was bitten (much harder, as that mark stayed for weeks!). I spoke to the mom this morning, who luckily understands (we had a conversation about biting about 2 weeks ago actually as the boy who had bitten C had also bitten her son – poor baby!). Our concern at the time was that if the biting continues our kids may think that it is okay to bite. My boy has never shown any of this behaviour at home – at home he tends to express his frustrations with flaying arms, and some screaming (luckily not too much!). While I understand that kids bite, and that this is likely to happen in a day care situation I was a bit more concerned when I realised that he was not the only or first one to be bitten. I just hope that this first bite is not the start of a habit for him. It is such a difficult situation to deal with really – I was not sure about the etiquette, but felt I needed to call the other mom (even the parents of the kid who bit my boy never called, or even made any mention of anything when running into each other at the day care – and I feel this is wrong...). Our day care has been great, we have never had any issues, and they really do a great job with the littlies. Our intention was never to keep him there for very long anyway, and in some way this makes me a little relieved – which in turn makes me feel bad, if that makes any sense at all!

On that note – I have called a pre school that takes kids in from age 2 and will be visiting them soon. They are substantially more expensive than what our current fees are, and also there will be more juggling in terms of holidays as they close for all school holidays – they do have holiday care facilities of course (but at an additional cost). We are strongly considering this place at the moment, but I will also need to look at some others and compare.

My ophthalmologist visit last week went well. I have no other/further issues with my eyes; only still have the optical nerve swelling. This week I visit an ENT to have a look see at my ears – the tinnitus, particularly in my right ear, has been a bit of a bother recently. The ear, just in general, also feels “funny” – I am not really sure how to explain it. So just hope the doctor get it! Next week I have a follow up with the pulmonologist.

My BG has been good lately. I feel as though it has been better than it has been a quite some time. I am testing more often, a lot more often, than before. This does help, and in a way makes me feel more accountable. I am getting the hang of carb counting and trusting my pump’s doses.

Friday, April 1, 2011

sniffles and swimming lessons

My boy has been coughing a bit this week, and has a runny nose. Last night he was quite miserable... Unfortunately all I can think of is all the issues we had last year before having grommets put in, and really hoping that this does not turn into all that again. He is not too bad though, so I hope that it will pass soon.

We are starting swimming lessons on Monday! I have wanted to do this for months now, but always put it off. So this week I decided to contact the swim school and they had an opening for him starting this Monday. I am quite excited about it and really curious to see how he enjoys it.

CGMS update: VERY annoying. Two nights of near perfect numbers - a flat line for both, and then this morning from about 02:25 it starts to creep up quite a bit. Why does this have to be so unpredictable!! I did a morning basal test which seemed good, and hope to do the afternoon one today. My breakfast boluses seem to be on track most of the time, but there were some odd numbers - I seem to take really long to peak (peaking at an okay number), and then coming back down also seems to take long. Not really sure what that is all about.... It has really been frustrating me this week.

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!

Thursday, February 17, 2011

new diagnosis

So I do have mumps, but have also now developed Bell's Palsy - facial paralysis on the right side of my face. There is no real treatment for Bell's Palsy, and I will basically just have to "wait it out". The swelling from the mumps has not gone down yet, but this should happen in the next week or so.

Bell's Palsy is caused the by facial nerve getting swollen and getting compressed, and thus resulting in the inability to control the muscles of the face. Luckily it is not permanent, but it will take some time to return to normal. there is no real known cause, but it is believed to be caused by a virus, so in my case most likely the mumps virus.

I am dealing with this as best as I can at the moment. I will return to work on Monday, as I will no longer be contagious. I look forward to being around people again, but I do feel slightly uncomfortable with the situation at the moment. eating and drinking has become difficult - drinking is more comfortable through a straw, and with eating I get tired quite quickly. My right eye, due to its inability to blink, also becomes dry and I need to use eye drops at least every 2 hours.

It really sounds a lot worse than it is. Honestly, if I have been able to live with diabetes, I can deal with this too. I guess the only difference is that with diabetes you don't really need to share your conditions with others, but with this it may be noticeable to others. While my face is still "symmetrical", it can be noticed when i smile or laugh, and at times when I talk. And at least with this I know that it will pass, whereas diabetes is kinda for life...

Wednesday, February 16, 2011


So what has been happening this past month and a half.....

First an update on the little guy in my life.  He is about to turn 16 months - I cannot believe that soon he will be 2!  He is running all over the place now, and climbing onto anything and everything.  Still a great eater, although there are times when playing with food is a little more interesting.  I think tooth number 7 will be cutting through any day now, and as always he is being a trooper on the teething front.  Words are few, but he definitely understands most of what we say - and obeys little commands (when he is in the mood of course).

He loves going out, and cries if one of us says good bye and/or walks towards the front door.  His cars are still a favourite - and now that he walks he sometimes pushes them while just bending down - a little uncomfortable looking I might add!  And one car is not enough - he needs to push 2.

Things at the day care are still going well, but I need to start looking and making plans for the next step.

My life has been busy, and I have been supporting the medical fraternity the past month.  And not even diabetes related!  Currently I am home with mumps - yes, mumps!  Who would have guessed I would be getting mumps in my thirties.  I took the little guy for his MMR about a week and a half ago, so now I am just hoping that he did not catch it.  Mumps ain't fun either - painful, and makes eating a little less interesting too.  A week ago I had an MRI for mystery headaches, and sudden loss of smell.  The MRI came back clear (relief!!), and I am now on some pills to see if it helps clear things.  Then after a month it will be reassessed.

Needless to say all of that has been playing slight havoc with my diabetes control, although I think things are still in an "okay" range.  It has been about 4 months since my last HbA1C, so I really should be heading for an appointment with my Endo soon.

After some discussion late last year we decided that we would like another baby.  We jumped straight into a FET in January.  Unfortunately it did not work, but in hindsight now with all these medical issues it was probably a blessing, as I would have been freaking out now, especially with the mumps!  During the cycle I was not as stressed out as I was in the previous cycles, I think because this time round I was trying for a second, and I already have my little miracle.  I guess in a way I had much less to loose, whereas before when I had no baby it felt as though there was a lot more at stake - if this makes any sense.  For now the treatments are on hold, and we will re-evaluate it again in a month or so.  We still have 5 embryos on ice, so probably enough for 2 more cycles if all goes well.

Oh, and did I mention that my little guy did not shed a tear or anything when he got his MMR - my big brave boy is growing up :)

Monday, January 3, 2011

a new year starts

Wow, 2011.  A New Year!

This past month has been a daze.  I went on a short break, spending a lot of time with my boy.  And I loved it so much!  It was so much fun to be able to spend whole days with him again.  We stayed home this holiday, and the two of us lazed around at home, visited, and did a couple of fun things like visiting the aquarium.  Christmas was spent with my husband's side of the family, and we had a quiet New Year.  The time at home flew by, and tomorrow I return to work.

And boy has my boy grown!  For the past couple of weeks he has gained so much confidence in his walking.  He walks most of the time now, and has even stopped pushing his cars around because of this - although at times he tries to push bigger cars while on his feet rather than hid knees, this is too funny to watch.  And when he falls over he just gets right back up!  He understands so much more now, and seems to be a real curious boy.  He points at absolutely everything.  He seems to have a few words which at time has meaning.  "Car" is a definite favourite, but also often used for other objects like planes, helicopters etc.  "Dada" has also on occasion now been directed to dad (no sign of mom, mama or anything in that line yet!).

I hope that this year is going to be exciting for us.  We are putting our flat / apartment onto the market at the end of this month.  We will at the same time start looking for something larger.  I hope that we will be able to complete the entire process within the first half of the year - and the quicker the better!  I look forward to having a garden for us to relax and play in, and just having more space generally.  We are definitely becoming a little cramped now with all the things that the little guy seems to "collect".

And some other exciting developments on the cards for us too....  Watch this space for more!