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...