Thursday, January 26, 2012

easing into the new year...

We have settled in well with the new routine at the new day care. I am leaving a little later in the mornings, which is great as things are no longer as rushed as before. I am able to get ready at a decent pace and enjoy breakfast and coffee at home. It does mean lots of morning and afternoon traffic though, but so far things have been manageable. The boy seems to be adjusting well too - still clingy most mornings, but it does not seem to be a matter of wanting to leave, more of wanting me to hang around. But I generally leave quite soon so as not to make things harder for him (and me).

We also started at a new swimming school two weeks ago and things are going great there too. He is now having one-on-one lessons. Generally he seems to co-operate, but sometimes he will just refuse to do something – this week it was blowing bubbles, which was according to him “sleeping”.

The Big Boy Bed is going well too. It has been over a month now. He has gotten out a couple of times. He is quite a funny one – the first night he walked into our room really slowly and then ran to me open armed. This week he walked into our room backwards... I had to laugh, he then turned around and ran to me open armed (again, it is cute) with the biggest grin on his face. He also talks in his sleep, which I used to do when I was little. Last night he kept asking for hi iPad, “I want iPad, I want iPad, I want xxx’s iPad”.

This year has started off with a bang - we have been busy busy busy. I have a few weekend play dates lines up (this weekend, another the following weekend, two second birthday parties, a baby shower, and a camping weekend (what am I getting myself into!). This has been slightly intentional - wanting to get out there and socialise more. The camping trip - well, that is another story. Camping is so not my thing - but I was told that my boy will enjoy it, and that apparently it is going to be fun and really relaxing. I will have to see about that... Generally I am excited about it that is when I am talking about it and thinking about all the fun I could have, but then when I have time to sit and think I wonder what on earth I am getting myself into!

CGMS needs to go on again. This time with a LOT more discipline. I had a little shock when I got another box in December from my local pharmacy - there price was substantially higher than the postal pharmacy I use for my pump supplies.

Monday, January 16, 2012

the one about friendship

During my holidays I read "MWF seeking BFF" by Rachel Bertche, and naturally friendship was on my mind a lot, just in general, as well as my own circle of friends too. I do not have a lot of friends around where I live. I used to have more, but as I got older, and we entered different life stages at different time, these started to dwindle. Reading the book made me realise too that perhaps I do not put enough time into making new friends, and staying in touch with old friends. So I decided that this year I really want to change that.

This weekend my boy was invited to a kiddie’s birthday party and I thought that this may be the perfect opportunity to meet more people with kids. I was not going to know many people there - in actual fact I had only met the dad before, and would know one other parent (who thankfully came). But at this party I was once again reminded about how our city is viewed when it comes to friendships. During the holidays friends from Joburg were down and we met for a day of beach and food. They started to talk about that mentioning that they found people to be less friendly, and more "clique-y", something I have heard people say before. A few years back I may not have agreed with that - that is when I had a larger group of friends. I have to admit, for the first while I was at the party I felt like the odd one out. A group of moms were all sitting together under the trees chatting. Not many dads around. I was actually quite happy when I kept on being pulled to the sandpit or trampoline by my son. One dad struck up conversation, and that was it. The rest of the party I hung with the other mom I had met before (She did not know anyone else either). The other moms pretty much sat in their little circle chatting and did not seem to include anyone else they did not know - I did go sit around them, and probably felt too intimidated to just join the conversation, and nobody else made any effort.

I guess this can be seen from both sides. I did not try making more of an effort - although I guess in a way I felt that perhaps they would / should, as it was obvious that I had arrived alone, and they all knew one another already. I don't think, or at least I don't want to believe, that it is in actual fact that bad that one would not be able to make new friends, or "break into" already established circles of friends. In the past 2 years I have made one great friend, who lives up the road, has one kid that is my boy's age. This all makes for great company - besides our kids' ages we have a lot more in common too. So we can meet over weekends with kids for play dates or outings, dinner, and sometimes a lunch without kids.

Two more moms I met in the past two years I would like to try keeping more contact with. And the mom at the party this weekend - she seems great and today we have arranged a tentative date to meet in about two weeks.

I have a couple more friends I have met online, but whose friendship has gone beyond the online space. I hope that things can grow with the ones who live close by.

This is by no means New Year’s resolutions, and I am not planning on embarking on anything the scale of what Rachel Bertche did. But her book has given me some perspective, and made me realise that perhaps I am not the only one who feels the way I do.

I will admit though that my greatest fear with issues such as these is getting hurt, or not being accepted.

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

two

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.