Sunday, December 27, 2009

a pattern?

I think I'm noticing a rough pattern with me that as I feel a bit better, I think more about things, don't come to good conclusions and end up feeling worse, I think it's a pattern that still places me in depressions, because the ups are still well below normal mood. But I think it's going to be mental strategies that move me forwards at these stages.

Thursday, December 24, 2009

The presents are wrapped...

...or rather placed in paper bags, I intended to wrap them and we have plenty of wrapped gifts from other people, so we won't lack for unwrapping fun. If it all works out ok tomorrow, then I'm highly tempted to do this again, but maybe make a big deal of decorating the bags. Part of the issue was stocking overflow, if we were going to include Grace in having a stocking we needed to acquire another one and in discussing this decided that it would be fun to all have stockings. We had a very lucky stumble across and found gorgeous knitted stockings at a dollar each, but smaller than the ones we've used the last 3 years, but with those in mind I had a few small presents for the kids that didn't fit in this years stockings.

We've also mucked up somewhat by having had a brilliant idea for something to get Sausage Boy, which was also a moderately pricey brilliant idea, but have failed to have a brilliant idea, or even an idea for what to give Banana Girl. I think she'd love something from the Littlest Pet Shop range, or maybe My Little Pony, but I stared at them in the store and couldn't make a decision, I think we'll have to take her to choose something for herself next week!


I'm coming to the conclusion that I don't like holidays (by holidays I mean Thanksgiving, Christmas etc.) particularly the way they are approached here, where we seem to bounce from one special day or holiday to the next and every single one is over commericalised, I don't like the continual cycle of build up, anticipation then it all being over.

Don't get me wrong, I'm thrilled to celebrate the birth of Christ, though in many ways it's something I do or try to do daily. I'm a bit disappointed we don't get to go to church on Christmas Day, if it's all about Him, then why do we relegate services to the evening before?

Wednesday, December 23, 2009


Sometimes our minds have thoughts that we don't really want to be having, though before anyone worries I'm not contemplating suicide or self harm.

I read somewhere, probably wikipedia, though it doesn't seem to be there now that there is a presumption that a mentally well person could not possible wish to kill themselves and thus death by suicide indicates mental illness whether it was diagnosed or not.

I may be remembering wrong, but my recollection is that though this is not the view of the experts that it is a commonly held view.

I can't with any certainty recall where I've stood on this in the past, but my thinking now would be that even when there is a mental health problem that it may not always be correct to point to that as the cause of the suicide.

As you all should know I'm a Christian and thus I believe suicide and self harm to be wrong though sadly none of us live lives free from sin. But without a Christian world view on what basis are they wrong? I can see that repeated incidents of self harm cannot be good for your long term mental health, but I'm beginning to see that in the complex world we live in there could be many complex situations where suicide would seem like a reasonable option and thus in the opposite direction threat of suicide doesn't necessarily imply a mental health problem.

That was some pretty bizarre rambling!

Sunday, December 20, 2009


I've never been averse to having a child in bed with me if that was what they needed to do to get to sleep, though it isn't my first choice.

Grace has in many ways been our easiest sleeper, I think I got lulled into a false sense of security! About 6 weeks ago she stopped sleeping through the night and it wasn't just a case of waking a bit earlier, it was waking 3+ times with no longer stretch between any of them.

Her first waking became before I even got to sleep, even if I went to bed right when she did.

Then she started rejecting her cot, she'd been a dream, we could put her down awake and she'd go to sleep, now we can rarely get her in there asleep, however gently we try and move her!

So I started lieing down with her when she'd feed anywhere between 10pm and midnight and I'd end up falling asleep too. I worried because of the meds in my system, but despite no concrete evidence I decided that even with them I'm not a heavy sleeper and she's no longer a newborn that can't wriggle, move, roll etc. so on balance the daytime risks to all the children of me getting minimal sleep are probably greater than the risk to her of me sleeping next to her.

It's been about 3 weeks now and I'm beginning to feel that we're both figuring out what to do and sleeping better, though last night wasn't so good.

Unfortunately she's having the same issues with daytime sleep, so it feels like it's a constant challenge to ensure she gets enough sleep.

Saturday, December 12, 2009


We've been wanting to try a new chinese restaurant near our house, but whenever we pass it, it's busy to overflowing, but today worked out such that we were there for an early dinner and we could be seated without waiting.

The kids have some favourites, which they were disappointed not to find on the menu, which resulted in a bit of a strop from one of them, but we made our choice, not really knowing what we would get.

One dish was something we've not come across before, they brought a bowl of what looked like rice krispie treats, and poured soup over it. We'd chosen chicken and mixed seafood and it was gorgeous!

Grace is at a challenging stage for dinners out, not ready for the high chair, but rather wriggly and grabby for sitting on knees! We managed, just! Eating with chopsticks is definitely the way forward for one handed eating - thinking back, I remember the summer after banana girl was born, I'd make myself a salad for lunch and eat that with chopsticks.

head to toe

Woo hoo, this time I thought of a title first! It's a bit random, but I thought I'd try and sum myself up from head to toe!

My hair seems to be growing at a rate of knots and I haven't really noticed the increase in hair loss that comes after birth. I seem to be losing hair at a rate that is entirely appropriate for it's length and thus capacity to tangle and get yanked out by a hair brush. My gold highlights seem so recent, but are way away from my roots, I'm in the mood for something more dramatic and one of these days I really should try a spiral perm, though I don't know how easy or difficult the Sarah Jessica Parker look of soft ringlets low down is to acheive.

My eyes don't like this weather, cold and dry is not good, nor is the bright sun and I'm not the best at remembering that eye drops exist and help, I just rub them and my eyelashes fall out and if I'm wearing eye make up, I make a mess! It's probably time to change my contact lenses, I take them for granted now, but extended wear contact lens have been life changing for me. Roll on the day that they invent ones that react to light and become sunglasses too, as steamed up sunglasses have been bugging me this week!

My face is in major breakout and has been for a while, I've never had the greatest skin, but I think this counts as bad for me, frustratingly it breaks out and feels dry at the same time!

My chest is still congested and it's hurting when I exert myself, I feel like I need a good slap on the back to get all the gunk out! I'll definitely be mentioning this to my doctor when I see her on Tuesday.

I suddenly seem to have started producing even more milk than usual, poor Grace is being overwhelmed by it and I'm exploding out of bras and tops that fitted a month ago and I'm getting a bit self concious about it. I put it down to the new med I started on, but looked it up and saw reports of decreased milk production, which might be a fantastic example of how different meds can have different effects on different people.

My nails seem to be getting a bit stronger than they were, not sure if that's pregnancy, or not having worn false nails for a while. I try to keep them long, but I'm still figuring out what shape I prefer and how to maintain that shape. My cuticles are hard and difficult to control, I should put something on them every day, but needless to say, I don't!

My waist is still non existant, but thinner than it was, thank goodness for draw string trousers, though I'm pushing the limits on my existing ones and really need to spend some time trying trousers on, but that will have to wait.

My c-section scar is bright red and quite thick and all the feeling below it seems to have returned, it's beautifully situated such that if other bits of my mama body allowed it then it would be completely hidden. I think about taking pictures of it because I'm proud of it, it's a badge that reminds me that even in a roundabout and non ideal way that I did make a good decision for me and my family and that even though it took a lot of drugs that I was there for the birth of my beautiful baby. It also seems to have consumed a keyhole scar, reducing the total from 8 to 7!

My hips are surviving, with the help of pain killers, but I'm struggling with stiffness in the low back. I mostly lift the bad way because I discovered that lifting the good way is actually much more difficult for me, I had an old lady moment last week when I tried to get up off the floor and couldn't, thankfully I was by a chair and could yank myself up! When I think about it, the state of my hip worries me, it doesn't seem to have a state where it is only slightly painful, it's either pain free or moderate, or worse and though it's being controlled well with painkillers right now, they are strong ones, which does build tolerance, requireing a higher dose even without increased pain and I suspect it is going to get worse, but I've no idea in what time scale. Which is why I don't think about it, other than in the very general sense of trying to get my weight back down to reduce the strain and reminding myself that I probably do need to think a bit more about nutrition for bone and joint health.

My thighs should probably be hidden from public view for a long time, enough said there, I think!

The niggly knee seems to have gone away, fingers crossed! The keyhole scars on the other near have been white and paper thin for years, to me they look like eyes with the bottom of the knee cap making a smile!

It took extreme force to zip up my knee high boots a few weeks ago, so some calf toning is on the agenda, I also have matching bruises, which surely can't be from that long ago, but what other explaination is there for matching bruises!

I have ankles rather than the cankles which were on display at the end of pregnancy, but at this time of year they get to hide under socks, I'm fussy about socks, I have high demands on what constitutes a comfortable sock, though these do tend to match with cheap socks!

My right big toe and I are still not best of friends, though the joint is in a good mood right now and the nail is neatly trimmed. My feet appreciate a bit of looking after, wearing crocs (or rather a cheapy version) in the house really works for me, even though they are not good for lots of walking. Frankly I'm amazed my feet held up so well last summer with cheap flip flops, which I got in the habit of wearing with those cankles I mentioned. I love slips ons and I got lucky last year and found a pair I could fit my orthotics into with just a tiny blue bit showing, but this week I reluctantly exchanged them for the fur lined shoes I found in the same sale, not quite as convenient for getting out the door, but rather more appropriate for the frosty weather.

Well, that's it, quite a fun exercise for me!

Wednesday, December 9, 2009


Do you ever want to ask a question, invite someone to an event, but then stop yourself because you wonder what people will think that they'll be trying to work out why and possibly therefore what you want.

I have a problem with this, it's a bit irrational though as I don't do any deep thinking when questioned, offerred kindness etc. but when I think of doing something, I usually panic about what it might be interpreted as and probably 9 times out of 10 my thought is lost. But when it isn't, when I carry the thought through, there are still the doubts in my head, the fears about communicating a demand or incorrect message.

My experience in the real world suggests I'm not the only overthinker, but not everyone is an overthinker, I need to calm my overthinking tendancies to the level where they don't avoid action and hope that if they hit another overthinker that it would be easily resolved.

Tuesday, December 8, 2009


A while ago, I read a post on a blog of a mother with cancer how she disliked some ways of using the word fighting. The crux of the matter was that you didn't beat cancer based on how hard you faught, some will die, some will survive and to consider those that died to have somehow not faught as hard is wrong. Now there may be some fuzziness around the edges with that, I've definitely seen new articles announcing research about the good effects of positive thinking, but it's still a pretty fair statement.

Now, here I am, feeling like really in the 8 months that I've been treated for depression that I'm really still very unwell, but with mental health issues I rather suspect that fighting does make a difference, though ironically the illness may take away your ability to fight. So does the fact that I'm here now mean I've not been fighting? I think not, an obvious consequence of depression is suicide, I'm still here, I think this means I'm fighting.

When people are fighting physical diseases we seek to encourage them, do we believe that our encouragement will cure them? It's usually something we just do, it just is what one does when someone is ill, subconciously I think we're actually trying to prevent depression, which as it turns out is an entirely reasonable thing to, not just because we want to avoid that suffering, but people with depression do have a reduced life expectancy that isn't entirely accounted for by suicide.

Monday, December 7, 2009


Recently I've been asked what my diagnosis is as if my answer might change what they would do. In those instances I don't think it would have made much difference, but I have no diagnosis to give them other than plain old vanilla PPD.

Labels can be good and labels can be bad. Getting a formal diagnosis of Ehlers Danlos syndrome was helpful in many ways, but also allowed me and my doctors to say that my hip pain was simply due to EDS, when in fact there was a bony abnormality, hip impingement and an actual injury, a labral tear.

But when we get to using diagnoses that are very vague and arbitrary, how helpful are they? Particularly when they change every few years. What's worse is that once you place a diagnosis upon someone, particularly within mental health, what that then makes others assume about them.

When I entered the program at Fairfax, I think they were using depression as a diagnosis, but within minutes of meeting me and barely having talked to me, I could observe a few occassions where something I said or did was interpreted very differently because it was seen through those glasses. My new psychiatrist chose to get to know me without any notes from anyone, though she has finally decided to ask for my previous psychiatrist's notes, which could be interesting!

I hate titles

Why is it so difficult to choose a title? I've lost count of the number of times I've got to this page, been stumped by choosing a title and not made the blog entry I was musing over that brought me to this page.

Blogging has been hard for me lately, but then frankly, so has expressing myself in any way, shape or form.

I'm still really struggling with chest congestion, I get out of breath at quite trivial things. The problem was unintentionally aggrevated last night by DH lighting a fire, something I've now banned until my chest is clear. We have clear, cold weather at the moment, I don't know if that makes pollution hang low, or just lots of people had fires last night, but the school run increased the level of discomfort signficantly, it makes me wonder how anyone with a lung problem manages.

I'm going to hit post now, I've deleted several things, but nothing seems to come out quite right.

Saturday, December 5, 2009

Busy week

I haven't posted for a week, not because I've nothing to say, but because it seems to take too long to say it.

It's been a moderately busy week and I actually feel like I've accomplished a few things around the edges! Shopping has been quite a big feature, I usually get groceries from Amazon Fresh, but there are a few things I like to have around from Trader Jos and some things we buy in bulk at Costco, both trips were managed, though the Costco one did end with me dropping Banana Girl off with Andrew at work saying please feed her and don't bring her home until you've picked up Sausage Boy from school, which isn't ideal.

We managed to make a Christmas cake after having spent a small fortune on dried fruit and a long time wandering around the supermarket trying to figure out where the glace cherries and mixed peel might be, or if they even sold it and assuming it probably wasn't called that so I couldn't even ask, turns out they do sell them, glace cherries are just labelled red cherries and mixed peel was labelled fruit cake mix and they were in the fresh fruit section.

I'm still not shaking off the remnants of flu, I tried not taking my cough medicine to see if I could shift some mucous (sorry if that's TMI), but it didn't seem to and just resulted in more coughing, I'd rather not cough, so it's back to taking the medicine! They gave me a 12 day prescription, so it lasts until the middle of next week, I don't hold out much hope for being better by then, given it's been about two weeks with no improvement.

I'm not sure if I mentioned that about 10 days ago I started an extra medication for depression. I'll very cautiously say that I think in the past couple of days I've noticed some improvement, with yesterday possibly having been the best day in several weeks. I've also been trying to take some non medication steps, I'm well aware of the need to exercise, but it's not easy to fit in and going for a walk isn't realistic in this weather, so we bought an exercise bike! I'm not fond of exercise bikes, I much prefer treadmills, but they take up more space and my hip is much more liable to complain, so recumbant bike it is and I'm determined to use it, however with the above discussion of my remaining flu symptoms my attempts to work out turned into chest pain and shortness of breath. I'm taking a couple of days off, but when I go back to it I need to look at the instructions to lower the resistance and keep the rpm low so I'm at least preparing my legs for some more intense cardio work!

We're also looking into getting a therapy light I've been convinced for years that I suffer from some degree of seasonal affective disorder. So with light, exercise and the right combination of meds I might actually be vaguely human in a few weeks!

Saturday, November 28, 2009

A very speedy visit to the ER

When I started coughing up tiny bits of blood yesterday I realised I needed someone to listen to my chest again and check that I hadn't managed to get pneumonia. Our doctors' office was closed for Thanksgiving and the nurse line for our insurance said I should go to the ER and thankfully it's covered 100%, so we didn't have to worry about that.

I was in and out in about 35mins, must have hit them at a slow time! I saw a physician's assistant rather than a doctor and she decided that I had subacute bronchitis and the blood likely came from my throat being irritated by the repeated coughing. So she prescribed me some stronger cough medicine.

We took the prescription along to the pharmacy and the assistant told us it wasn't a prescription but an over the counter medicine, but didn't give us any help with finding it, I had a good look and came to the conclusion she was wrong, but instead of going back to the pharmacy counter I went home in a grump.

I called the hospital and they told me to take it back to the pharmacy and have them call the hospital if they couldn't work it out. The next person I gave it to took one look at it and told me it was a very strong cough medicine that was definitely prescription only, so they filled it and I went home!

It actually seems to work, I was a bit skeptical as I'd already been taking a prescription one without much luck, so hopefully this will now be the start of getting better!

Friday, November 27, 2009

Long weekend

With Thanksgiving yesterday, we have a four day weekend, which should hopefully be a chance to recharge our batteries a bit!

I'm still struggling with things left over from swine flu, my chest is still really mucousy, though it's still clear, suggesting no secondary infection. The right side is particularly bad, the whole ribcage is sore from repeatedly coughing, but it feels like there is deeper pain and at times breathing becomes very painful, but I'm not actually short of breath.

We had a lovely Thanksgiving meal with friends and their family yesterday, the kids had a great time and didn't want to come home!

We're avoiding the shops today, everything is crazy busy with the biggest sales of the year. We need a new dishwasher, but I'd rather go and choose the one we want when we actually have space to browse and make a good choice!

Wednesday, November 25, 2009

Well baby visit

Grace weighed 13lb8oz, which is a little lighter than I expected, but satisfactory, with the charts our doctor uses it's 8th centile. Her height was 25 1/4 inches, which is 50th centile, which surprises me as neither of our other kids have ever been anywhere near that tall, she does seem to have a longish body, but not long overall. Head was 16 1/4 inches, 25th centile. Everything checked and asked indicates that she really is a "well" baby!

We talked about solids and the doctor reminded me that breastfeeding is still the primary food and agreed that Grace didn't seem ready yet as she still has the tongue thrust reflex. She is suggesting we start with iron fortified cereal though, which I wasn't planning to do but because we weren't starting solids anyway, I hadn't reviewed the facts as to why I don't think this is necessary, I just quickly checked here and confirmed I hadn't got my facts mixed up. I know my iron is good, I had it checked 2 weeks ago and the doctor was surprised how good it was for 6 months post partum, so I know my milk is going to contain plenty of it!

Tuesday, November 24, 2009

6 months

Grace is 6 months old today, I can't quite believe it! I took some pictures of her earlier, but I haven't downloaded them yet.

She's become quite a social little girl, loves to interact with people, she even held her hand out to shake hands with someone at church on Sunday. She is very wriggly, to the extent I'm a little surprised she's not managed very much movement. I've had to move her crib so it's not touching our bed as her wriggles were wobbling it and stopping me from getting to sleep. Almost every time she goes down, she wriggles until the top of her head is touching the end of the crib, then goes to sleep, it's almost as if she needs something touching the top of her head to sleep!

She rolls both ways, but mostly one way then back to the start, not the full 360! She can sit up on your lap, but seems quite a long way from sitting by herself.

I expect a baby this age to be "mouthy", but she seems even more keen on this than the other two and she seems to prefer soft things to hard things, so not really a teething behaviour. She'll use her own clothes for this purpose if she can't grab anything else.

She had a really cute moment yesterday where it seemed like she suddenly discovered her left foot, hiding in side her sleepsuit, she had a good look at it, then tried to shove it in her mouth. I tried to introduce her to her right foot, but she wasn't having any of it.

She's breastfeeding great, we've finally got to a point where I don't have to work to make enough milk for her and I'm verging on having an overactive letdown and she coughs and splutters because it's flowing too fast, which is such a nice feeling as it's taken so long to get here!

We're not planning to start her on solids yet, she doesn't seem anywhere near ready, if I'm right about when she was conceived, she was almost a month early, so it's not all that surprising. However at this point if she does grab something on our plates that's ok for her, we won't stop her. We'll be careful with dairy as I still have a nagging suspicion she's sensitive to it and because I don't eat wheat, she's not been exposed to that indirectly, so we'll be cautious about that too. This is the longest I've exclusively breastfed, Sausage Boy needed some supplementation and Banana Girl reached out and stuffed a fairy cake in her mouth one day before 6 months, so it's only one day longer!

I looked at the other kids' red books and saw what weights they were at this stage, Sausage Boy was 13lb, having barely gained anything in the 6th month, but it was more than double his birth weight! Banana Girl wasn't weighed as it was obvious she was doing just fine, but she must have been 16-17lb, barely double her birthweight. Grace was under Sausage Boy for a while, but 2.5 weeks ago she was over 13lb, so I'm guessing at her visit tomorrow she'll be around 14lb, which won't be double her birthweight. They don't measure length in the UK, so heightwise I can't really compare, but then all our babies have clearly been on the shorter end of the scale and she's no different!

She's just woken up, so I guess that's the end of "Grace at 6 months".

Thursday, November 19, 2009


I'm finally starting to get my head round the need to actually think about and do some planning for Christmas. I'm finally accepting that the burden of planning and organising seems to fall on mums and what I make of it is going to create the memories the kids have for the rest of their lives.

For some reason when they woke up this morning they were all excited about presents, which seemed to come a bit out of the blue and bothered me a bit, but then getting presents is exciting, so then it bothered me that they probably won't have that many to unwrap. I actually rather like small presents and nik naks, I think on average they probably give more pleasure and if it misses the mark then it's not a great cost and maybe it will eventually find a good home. There are a few things around the house that were presents like that for me as a child which my children are now finding pleasure from.

Banana Girl and I went through photos from this year and picked out twelve, roughly one for each month. The intention is some kind of photo gift for family, but I can't decide whether or not to try and pull something together myself, or hunt around for somewhere I can upload them and get a calendar or something.

Maybe this year will be the year I actually manage to print out address labels, but realistically am I really going to overcome my hatred of printers, probably not!

Wednesday, November 18, 2009


I've been thinking a lot recently about home, nationality, cultural identity, that kind of thing. Eventhough I don't feel this causes a lot of surface emotion for me, I think underneath it's something that is causing me to feel quite unsettled and causing me some anxiety.

We've been here 3 years now and have no imminent plans to return to the UK, we don't even really have any vague plans. Last time it came up, I think we both still felt that in the very long term we'll be in the UK, but that's only very vague and I can easily see that it might not happen.

Either way living here has changed me in so many ways that I don't think England will ever feel truely home.

In all this I have to remember that all this is in God's hands, when we first moved here I felt very secure in the knowledge that it was His plan and that He knew the plan for our future even though we didn't. I can see now that as we settled in and things weren't quite so new that my thoughts didn't turn to this very often and then it's hit me today that I'm not trusting Him about the bigger picture, though I'm not taking it into my own hands and planning my own future either, I'm just not thinking about it at all.

This then makes me reflect deeper about how we are supposed to live and I'm not sure that's even a place I have the resources or strength to think deeply on right now. All I know is that right now this is making me feel quite unsettled and frankly I don't know how anyone copes with that on a purely human level.

Monday, November 16, 2009

The therapy without a name

I'm seeing this psychiatrist who uses a type of therapy that is so new it doesn't have a name. It's based on neuroplasticity in layman's terms it's about rewiring the brain, hunting down bad connections that feed low mood and creating new one. In practice it seems to be a lot about being aware of your body and she often asks "what are you noticing?".

I'm not really sure what to make of it. I'm a bit uncomfortable with the focus on the individual, one analogy she uses is a lifeboat bobbing around on an ocean and we can't control the ocean, but we can make the lifeboat more comfortable.

I also struggle with the mind/body connection. I don't want to deny it, but it's had a bit impact on my past, I had postnatal depression after my first child was born. My 2nd child was born 2 years later and I had an horrific time physically, but in seeking to get help with that I still had the label of depression and it was a battle to get the help I needed, I've got copies of some of my medical records from the time and I have letters from my psychiatrist saying things like "The lady is not depressed, her pain is purely physical, please deal with it". I know there is a huge connection between pain and depression and that I didn't get depressed at that time is something I want to celebrate and in someways marks a success in mind/body separation. My body isn't fully healed, it never will be so there is some element of fear in opening that connection.

Sunday, November 15, 2009

2 down, 3 to go?

Sausage Boy is now down too, he went to a gymnastics thing last night and went flop and had to come home early, then was up in the night and in pain. I'd asked DH to go out and stock up on various things, children's tylenol being one of them, but he hadn't. Fortunately I found some ibuprofen and he seems grateful to be given something and went back to bed. He caused a slight panic this afternoon when he went up stairs and was then not to be found in his room or our room, for whatever reason he'd decided to go to sleep in the spare room, I suppose at least there he won't be disturbed.

I've been doing a bit of research about when complications are likely to occur, which apparently is 3-5 days after onset of symptoms, so I'm not out of the woods yet, I've been this congested in my chest before and it not developed into anything further, though it's less than 2 months since a CT scan for other reasons showed an incidental finding of fluid on my lungs, though a follow up x-ray was fine. I don't follow the exact medical connection, because until this happened I wasn't aware you could have it and it not be a problem, but I have read somewhere that some organisation is now advising that all people hospitalised for flu should have a CT scan to check for this, so there is a little nagging in the back of my mind that if I managed to get it for no reason then maybe I'm going to more vulnerable to complications.

The good news is that Grace seems to be completely fine, as if she did get it she'd be very vulnerable being under 6 months and tiny with it, thank goodness for breastfeeding! My supply must be dipping though as I've completely lost my appetite and she has been eating through the night the past few nights, but it doesn't really matter as I'm snoozing at other times too, everything has blurred into a bit of a haze.

Friday, November 13, 2009

more bizarre treatments

The nurse told me on the phone that I wanted to get my temperature up to 100.5, but as soon as it hit 101 that I should take paracetamol. I'd already been taking paracetamol for pain, so I was told not to take any more until my temp was up to 101, when DH woke me to feed Grace I was at 100.9 after feeding I didn't wait for the thermometer to settle on a reading once it got beyond 102, it was time to take those pills!

We've no idea where we picked this up, we know several people who've had it, but around a month-6 weeks ago, so it probably isn't directly from them. Kids, Grace and DH seem fine, so I'm keeping my distance other than to feed Grace, which should hopefully protect her. I'm even wondering about pumping and turning it into chocolate milk for the other kids.

It would probably be useful to think of other ways we can boost their immunity, chewy vitamins perhaps.

it's official

I have flu, instructions are to rest and gargle with hot water every two hours. I asked about tamiflu as I'd thought that was supposed to the weapon to prevent spread, but this group of doctors are not doing that, they say the side effects aren't worth it. Time to try and sleep!


I've been asking myself can it be flu without a temperature, but now my temp has started to climb, which made me realise I didn't know what to do, we'd been in the doctor's office at the beginning of the week and I don't remember seeing anything. I put my thinking cap on and figured the best thing to do was to call and ask, afterall, if they asked me to come in, I could always say no. So I called and asked if they have a system to avoid me coming in and infecting everyone and apparently they do, so a nurse will call me.

Thursday, November 12, 2009

knee is playing tricks on me

ok, so my knee isn't a sentient being and isn't able to play tricks on me, but that's certainly what it feels like. I can't remember the first time my left knee yelled at me, but it's been intermittant for a while and more frequent since Grace was born. The reason I say it's playing tricks on me is that it comes and goes without rhyme or reason, I really cannot fathom any triggers or cures.

What seems to happen is everything is fine, then I'll take a step upwards and the pain hits and it's so intense ans such a surprise that I may well cry out, stupidly I usually then try again a couple of times, then resort to taking stairs one at a time, right leg leading. Then I'll forget all about it, until the next time I climb stairs or cross uneven terrain. Sometimes the first pain will be the worst pain, sometimes not, often it goes away completely between triggers, but sometimes doesn't.

I rather suspect that this is yet another hint that I need to get fitter and stronger, which is something I still need to figure out how to do. I really have to do something, I should talk to Andrew about pilates, because of everything I've done that really does seem to work for me, but as the private sessions do seem to make a big difference in it's effectiveness, it's a cost issue as well as a time issue.

The dinner they ate!

Whilst cooking yesterday's dinner, I was thinking it would be one of those dinners that wouldn't go down well with the kids. It was a packet of ginger coconut rice, that we've never had before and grilled scallops (from a packet that's been in the freezer too long!). Both of them ate it all! I'll have to buy that rice again as usually they aren't very good with rice, I love scallops, so I'm glad that they are on the menu!

Wednesday, November 11, 2009

something rather than nothing

Well it looks like my slight symptoms over the weekend really were something, I don't know what, as according to my little table for differentiating between cold and flu, I have some symptoms more common with flu, and am missing symptoms that should be present for a cold, such as nasal congestion, but I don't have a fever. I'll go with not flu, not a cold, but something chesty for today's supremely accurate diagnosis work!

Had to do a bit of looking up to see what was ok with breastfeeding and robitussin cough is, but so far it hasn't worked! I'm just hoping I'll sleep ok tonight, then we can face the world tomorrow with my hopefully somewhat improved.

The only way is down!


I spotted this when we were out looking at trains on Sunday!
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Tuesday, November 10, 2009


My mood is definitely better than it was, but I'm still struggling with motivation, or "get up and go". I'm at a point where I know things need to be done, but I can't face the idea of even making a mental list of what needs to be done, so therefore I don't do anything, unless it's right in my face, i.e. looking after Grace. I feel very lazy and I don't deny that a tendency to laziness is part of this, but it's more complex than that. When I'm not depressed, I definitely have a tendancy to do things that are pleasureable rather than work, but now I'm not even doing things that are pleasureable, I'm just surviving.

Monday, November 9, 2009

too many appointments

I saw my psychiatrist and counsellor today, and realised that this isn't a good idea. One of the reasons I'm with this psychiatrist is that she does do counselling, but it's a very different style from regular counselling, so I think that at least for now I need to keep working with the counsellor as well, even though I've found it quite difficult.

I think I probably have quite a difficult personality for counselling, when I'm asked what I want to acheive by the sessions, my usual response is "I don't know, that's why I'm here". I feel that if I knew what I wanted to acheive I wouldn't need a counsellor to help me acheive it, though I think that is a very simplistic view of things.

I really need to fit exercise into my schedule, there are two problems with making an effort to walk more, the rain and the fact that I do still have pelvic instability, 20 minutes at a brisk pace can really set some pain off it those areas. I know what has worked for me in the past, but that's also something difficult to organise and finance, pilates is the type of exercise that works for me, but I have enough needs that group classes are not ideal. I also am not keen to put Grace in gym daycare, it's supposed to be well child, but with incubation periods of various illnesses that doesn't help much, I've got to figure it out, but I need some help with getting effective pain relief whilst I do that.

Saturday, November 7, 2009

maybe something, maybe not

My feeling slightly coldy increased fractionally today, but it's still far from a full blown cold - maybe you'd call that a mild cold! I'm wondering if it may be slight allergies as whilst we were getting Grace weighed, I suddenly got a whiff of some kind of plant and felt a suspicious tingle (not sure how to describe the feeling, if you've experienced plant allergies you'll know what I mean, if not, I'm not sure anything could describe it), which turned out to be from a large pot plant in a room across the corridor.

Yesterday I was lucky to get a quick response from my doctor and I was able to take the migraine preventer within two hours of the first symptoms, it worked! At least it worked on the headache and visual component, but still left a fair amount of nausea, which is exactly what happened last time I took it, but I was pregnant then, though I didn't know it.

After trying a friend's baby bjorn carrier last weekend and finding it infinitely more comfortable than the one we have, we reached deep into our pockets and bought one, it really was deep as the one we tried was an active version with extra back support, which I could feel was making a big difference for me. Now I'm going to have to use it as much as possible to justify it! Carrying her just in arms, or lifting the car seat was really bothering various bits of my body, so the discipline will hopefully be good for me!

Friday, November 6, 2009

bother, migraine

I've been disorganised, my neurologist wrote me a prescription for a medication you take as soon as you feel a migraine coming on, but the pharmacist wouldn't fill it as she was concerned about it's possible interaction with lexapro, my doctor knew about the lexapro and also gave me some samples, but without actually asking him I can't assume that he knew about the possible interaction, but also thought it was ok, or whether he didn't, or had forgotten I was taking lexapro. So I don't even want to take one of the samples until I get an answer - I called his office, but it's possible they won't even get the message until after the weekend and if they do, I'm relying on the goodwill of his assistant to actually pass it on today rather than wait until Monday. I tried to leave a message that was apologetic for my own disorganisation whilst still communicating that a quick answer would be appreciated. I also discovered that I didn't refill my antisickness tablets and there is only one left, our pharmacy takes 12 hours to do a phone refill and this script got written as regular tablets not ones that dissolve on your tongue, which seem to work better.

To add to all that I'm running really low on painkillers, but as my regular doctor is on holiday right now for two weeks, when I called to make an appointment about two weeks ago, it ended up being almost a month away! So I'm really feeling like a bit of a lemon, I had plenty of opportunity to have plans in place for the likely occurance of a migraine and I didn't, talk about sticking you head in the sand!

I really shouldn't even be sat here blogging, I have two sleeping kids, I should be taking all possible actions to avoid this getting any worse, but having taken my afternoon dose of adderall my brain doesn't want to relax.

did I ever mention

Grace shares a birthday with Queen Victoria, 190 years after her, this also means that Grace shares a birthday with her Great Great Grandmother, born in 1900, who was named Victoria after Queen Victoria.

That Friday feeling

Ok, maybe it's not a Friday feeling, maybe it's just how I'm feeling, emotionally I feel fine, physically I'm definitely not 100%, maybe the sniffle and the scratchy throat won't turn into anything, then again, maybe they will!

The good thing is that it seems that Grace probably wasn't reacting to ambien yesterday as this morning, instead of sleeping fo ages she just fed constantly, it's frustrating to have a milk supply that is so sensitive, getting slightly full yesterday seems to have led to less milk today.

More than one person suggested I try caramel apples, for simplicity, but that just made me all the more determined to make real toffee apples. This was accomplished with the aid of a brand new saucepan, I was actually given the money to buy one 4.5 years ago!

In finding a new recipe, I discovered there is some dispute as to what temperature the sugar should reach, ranging from soft ball to hard crack. What to me is a traditional toffee apple has very brittle toffee, which with my limited sugar boiling experience is hard crack. I discovered in the first attempt that hard crack on my sugar thermometer is the low end of the possible range and the resultant toffee wasn't really hard crack, so this time I let it go about 10 deg F above the hard crack line and it turned out perfectly.

The other tricky thing is keeping the sugar at a temperature where it isn't bubbling, but is still runny enough to cover the apples, none of the instructions I found suggested anything but taking the pan off the stove, which I did initially, which worked for the first few, then it became impossible to twist the apple as the sugar was so stiff, so I reheated it, then left the ring on low, which seemed to work.

Some day, I'd like to make Edinburgh rock, which is a favourite of mine, one I haven't had in a long time.

Thursday, November 5, 2009

Sleepy Grace

I really hope this isn't a consequence of the ambien I took last night, but Grace slept for almost 4 hours this morning, then fed, had an hour of being awake and happy then zonked out again. Maybe she is catching up for yesterday when she didn't really nap at all, or maybe she is fighting a virus. I checked "Medication and Mother's Milk" and it says it's undetectable in breastmilk 4-5 hours after taking it, she didn't feed until about 9 hours after I took.

Problem is, if it's a virus she could continue this behaviour for a few days, so it could take a week or so to determine if it's the ambien, because I don't want to discontinue it based on one day.

As far as I can tell, the only harm from infant drowsiness is that they are not awake to absorb the world around them and do the developing they need to do, so I feel reasonably confident that a week of figuring it out won't harm her. The conservative approach would be to not take the ambien tonight, but I feel so much better today, even without having taken the extra adderall this afternoon, that I really don't want to do that. It seems to me like when you do something positive in recovery from depression that it gives you more boost than logically it would, but that the same is also true, make a backwards step and the fall is further.

Wednesday, November 4, 2009

Moving forward - I hope (and pray!)

In the past few days I've been able to step back and look at the bigger picture of how things are going. I'm trying to see it as a positive thing that I can step back, but unfortunately when I do, I really don't like what I see.

When I do step back, I realise it's been a year since I first saw signs of depression, 7 months since I started treatment and yet I'm still far from well. One way of looking at it is to say that after Sausage Boy was born, it did take until after Christmas for things to really start looking up, but I wasn't depressed in pregnancy with him, though as I do think there is a hormonal component to this, perhaps that time frame is how long it takes for hormonal normality to be restored.

On the other hand, I have to consider that maybe time isn't going to do the trick and that somehow we have to make changes, both in life and with my medication to turn the corner.

I've been reading a little bit about symptoms of depression and how they would influence medication choices and I'm feeling that just an SSRI probably isn't a good fit for me, however, having had a severe reaction to Cymbalta, an SNRI, then taking any that have an effect on norepinephrine is something that needs to be approached with caution.

I felt like I was stuck on what else we could play around with medicationwise, because of breastfeeding and I was beginning to consider that maybe stopping breastfeeding might be best for the whole family. I made sure to say this all to my doctor today, including how I really didn't feel comfortable about stopping breastfeeding. Thankfully she had other ideas, that we should try to address my sleep issues more effectively as it's obvious that these are having a huge effect on my coping ability. We haven't seen any evidence of Grace reacting to the adderall I've been taking, so she suggested that I take an extra half dose at about 2pm. She also suggested that as I got good results with ambien for sleep that I go back to that, I'd stopped it back in April because my previous psychiatrist felt it contributed to lowering my mood, but the new one thinks that it's worth trying.

So I took my extra dose this afternoon and I definitely feel a lot better at this time than I did the past few days, which is encouraging. I need to get the ambien prescription filled before bed, but I'm hopeful about that too.

I find this particular doctor very encouraging, it's not anything she says, more her whole personality. Even though I've only seen her three times, I felt with very little explanation from me that she understood how I felt about breastfeeding and grasped that I was at a point where things really needed to change and that for me to be even presenting it as an option that I really was feeling pretty desperate. She's given me the confidence that I can make it a few more weeks which will give Grace her 6 months of exclusive breastfeeding and gives me more time to see if time is helping. I'm really pleased about this as yesterday I wasn't sure how I'd even make it to the weekend.

The big toffee apple disaster!

On Monday I mentioned the British tradition of toffee apples on bonfire night to Sausage Boy. As you would expect he wanted to make some. I've done it before and both kids have demonstrated they can be trusted to follow instructions in the kitchen, so I wasn't overly concerned about them being around boiling sugar.

The problem came in finding a recipe, I think I last made them when pregnant with Sausage Boy, so seven years ago. So I googled for a recipe and used the first one I found, BIG MISTAKE, after I eventually got the sugar to the right temperature, it became obvious that there was way too much fat in the recipe and the toffee just slid right off the apples!

Fortunately I'd already laid out foil trays for the leftovers, so I've just made a rather larger quantity than I expected of toffee!

I've done a bit more googling and found another few recipes and I given I have lots of apples, I think I will try again, even if it's after bonfire night, this time I'll go for fat free. Another suggestion I found was to have the apples in the fridge before you dip them in the toffee, so it sets quicker, so I'll be trying that too.

The kids were actually really good with preparing the apples, they carefully peeled off all the labels and then washed and dried them all, not a single one ended up on the floor, they struggled a bit more with pushing the sticks into the apples, but that isn't surprising.

I'm also very tempted to use this an excuse to buy a new saucepan as some of the non stick coating on mine came off and there was the odd black fleck in the toffee mixture.

Tuesday, November 3, 2009

up and down

It was so good to feel a bit perkier yesterday morning that I was disappointed as the end of the afternoon came that my mood started to fall, particularly as I'd got some rest, the kids were being pretty good and dinner was planned. Unfortunately that's the nature of depression, looking at the negatives not the positives, but even by the end of yesterday I had at least realised that that was how I was looking at things and went to bed feeling encouraged that I'd had several hours of feeling better.

Unfortunately I took a long time to get off to sleep last night and Grace woke early and though I fell back asleep, she only slept another 1.5 hours, so I'm feeling sleep deprived today.

I also had to be out early to meet with Sausage Boy's teacher at 8am! I took Grace, even though she didn't need feeding so that Andrew wasn't having to juggle all three of them. Apparently he is a delight to have around and she doesn't really have any concerns about him, everything is average or better, in particular his speaking, he's not really a surprise to us as though he wasn't an early speaker, once he got going, there was no stopping him and he uses some pretty big words. We found last year in kindergarten that he's a natural when it comes to public speaking.

One thing that does bother us is the maths curriculum, I suspect it's one of those things where it's better than previous ones for weaker students and similar for the vast majority of students, but that it holds back the brighter students. It insists that they show working for things that last year in kindergarten working wasn't required, so to do something like 5+3, instead of just answering 8, they have to write 6 7 8 above the 3 and it's absolutely rigid in requiring that they do it that way. I remember at school, showing your working was always encouraged, but rarely demanded, if you didn't show working but got everything right you wouldn't lose marks, just earn a comment of "please show your working"! Thankfully it seems that unlike his parents Sausage Boy so far is very content to do as he is asked, but as the weeks go on, what he does in his head just because he wants to is rapidly diverging from what he does on paper. I can see that when it gets to multiplication he will have likely taught himself his timestables then be taught to draw everything out and at some point he may well not be so happy to oblige. For now we'll continue to encourage him to produce neat and accurate work and keep our concerns to ourselves, but it seems inevitable that at some point we'll have to consider our options.

Monday, November 2, 2009

Fall Festival


Instead of dressing up for Halloween, our kids got to dress up for the Fall Festival at Banana Girl's preschool, I tried to get a picture of them all dressed up, but as usual it's close to impossible to get them all looking good at the same time, this is about the best.
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A little brighter

I slept badly last night, I was awake before Grace woke up, which I prefer, but not when I look at my watch and realise it's only 5am! I was then bright and wide awake and couldn't get to sleep, then conked out after 7am. Sausage Boy has a random day off school and kindly played with Grace whilst I had a shower and for the first time in weeks I felt motivated to do stuff and plan stuff, so I have a list of things I need to do this afternoon and some ideas for later in the week, I'm trying to be realistic with myself and am letting myself take some timeout right now, whilst Grace is napping.

I had a counselling session at lunch time, it's only my 2nd with this counsellor as she had to cancel last week, but I feel positive about it, even though I think it's going to be challenging.


We've been wanting to get a new sofa for a while, when we went to Ikea in the summer, I saw one I liked and it's just been a matter of finding the time to get it. One of the cushions on our current sofa had a rip in it that was getting bigger and bigger and really frustrating me and I was getting pretty strong in saying we needed to do something about it.

Somehow not having a plan for dinner on Saturday, turned into a suggestion of going to Ikea to eat and sorting out getting the sofa delivered, which then turned into not eating at Ikea, but Andrew taking all the kids out afterwards to sort things out.

When he saw the boxes, he realised he could get them in the car, though he thought it would take two trips, so he arranged for them to be held for 24 hours, then brought the kids home, took the seats out and headed back for the first trip. It turned out that by a hair's breadth, he could get everything in so after 9pm on Saturday, we had all the pieces to build a new sofa.

I felt a bit mean and lazy, but after having read the approach to EDS that I recently posted, I decided not to push myself, but to be careful, which meant Andrew did a lot of hard work and I did a lot of unwrapping of plastic! I also took the conservative approach of going to bed promptly, leaving the job unfinished and suggested that Andrew did the same, thinking it would keep me awake. However he put it all together, for which I am very thankful and his activities didn't keep me awake, so on Sunday morning I came downstairs to a transformed living room, but empty boxes to climb over and a 3 seater sofa in the only available space left downstairs, meaning direct access from the kitchen to the dining room table was gone!

After letting the kids play with the boxes, they did make their way to the recycling on Sunday afternoon, thank you Andrew! But the extra sofa is still there, Andrew is convinced it will fit in the car, I'm not so confident, but fingers crossed it will and the tip is open very late, so it should get taken tonight and then we'll have space to move around again!

Sunday, November 1, 2009

safety during surgery

Over the past couple of years I've seen numerous articles like this, yet whenever I discuss this kind of thing with someone in healthcare, it seems like they are extremely defensive.

I was pretty stunned at the statement "Some have also implemented a check list system for each individual patient.", to me that seems obvious, surely someone should be checking the big picture, if the patient comes from a ward where they've been prepped, to you assume the people up there did everything right, how many times are basics missed like not having put surgical stockings on?

I've had a few surgeries now, in several different places, private and NHS in the UK and here in the US, obviously the type of surgery influences exactly how it is handled, but I've definitely felt more confident when the process has begun in an area dedicated to surgery than on a ward with a mixture of stages, I suppose because everyone is focused on preparing you for surgery and it seems less likely that something gets missed.

Only once in all that time have I spoken to the anethetist before the day of the surgery, which I've now decided is a very good idea and I'll always try to do in future. The opposite situation arose when on anethetist could only vaguely remember what Ehlers Danlos syndrome was and asked me if it would cause any problems with knocking me out!

Saturday, October 31, 2009

Good nutrition

I really don't eat a good diet, over the past few months I've got into some bad habits that it's time to change. Breakfast is my worst meal, mornings are such a struggle for me that I've been grabbing bars to eat, they are ok in terms of having a good amount of protein in them, but they do have artifical sweetners, one of them even has green vegetables somehow squashed into it. However, it's time to change, once the current boxes are done I need another plan for breakfast. I'm also trying to be realistic, I'm not going to eat something that takes lots of time to prepare.

I just put quinoa flakes on to cook in our little dipper crockpot, it's pretty bland and requires scrubbing out the crockpot afterwards, so it's not a solution for every morning, but it's a step in the right direction.

I'm also beginning to think about how we'll introduce solids to Grace, I'd prefer to let her lead the way, but that still requires us to put something in front of her to allow her to choose and I'm feeling surprisingly stumped for ideas considering we've done this twice before! Sausage Boy adored chunks of cheddar cheese, but I'm not sure that's something we want to do with Grace, I'm still musing over whether she has a dairy or other food sensitivity, so I think we probably need to be more cautious than with the other two, particularly as we completely failed to notice that Banana Girl was having a slight reaction to dairy until we were told to cut it out by a natropath and things improved!

An EDS plan

I found this on an EDS blog today, written by Sama Bellomo, I do intend to comment on it, but I'm letting it have it's own post to avoid any confusion as to who the author is, as in it's not me that wrote it!


Mastering EDS: A mind and body approach to education, adaptation and acclimation

I write this plan to take control of my health, acknowledging both mind and body as integral to gaining control.

Ground rules:
-Overcome, adapt, keep a level head, keep going!
-What we cannot cure, we must endure.
-Accept that laxity and dislocations are going to happen

Short Term:
-Let it hurt, get mad, emote
-Draw, write, sing, paint
-Move on, find self-worth

Educate myself about my condition
-Recover health records
-Recover diagnostic imaging
-Read enough to understand, but not everything

Let friends, professors, health care help
-Build concise list of communicative sentences
-Talk, type
-Stay involved with the world

-Identify hardest obstacles and overcome/adapt
-Environment (messes, furniture, ergonomics)
-Holding pens, cracking fingers, loose wrists
-Cracking ankles, feet, toes
-Make time and compartmentalize it

Be realistic
-Accept pain and accommodate rather than resist
-Plan ahead to avoid complications
-Maintain what is currently in good health
-Find ways to have fun without getting injured

Take care of my body
-Find a healthy exercise program that feels safe and effective

Make peace with my body
-Treat it with kindness, mindfulness
-Push it to its limit, but not beyond
-Adapt with splints and surgery (only when necessary)

Let society deal with society's stigmas
-Become self-confident in my abilities
-Let people ask and be answered
-Understand how my environment works for/against me from my own perspective

Be well,
Sama Bellomo

Friday, October 30, 2009

Still surviving

The way I feel is kind of a mixed bag, I still feel pretty close to tears a lot of the time, yet I'm also able to smile and laugh and enjoy a conversation. I'm completely exhausted, despite Grace having returned to her usual sleeping through the night, it seems like sleeping at night isn't restorative.

I got a massage this morning, I'd scheduled it as a desperate attempt to try and reduce pain levels, but I was still surprised just how tight and tender some bits of me were. I think that's kind of reassuring that even if my depression is affecting my pain by causing bits of me to tense up easily, it probably isn't affecting my perception of pain, considering how tender some bits were I was surprised that I hadn't been experiencing much worse pain. I paid for 4 sessions and plan to go weekly for 4 weeks to see if I can break the cycle.

We have an event at preschool tonight, the fall festival, it's their alternative to halloween, though still too close for my tastes, too many smiling pumpkins for comfort - it's interesting just how strong symbolism can be, I don't know how long I've known about the meaning behind a carved pumpkin, but it's so strong for me that I'm always uncomfortable seeing one, or any kind of representation of a pumpkin and a face, so despite not celebrating halloween Banana Girl's classroom was decorated with several different pumkins decorations, most of which had faces on them.

We've taught Sausage Boy about what a Jack 0'Lantern is but have allowed him to go to a party at school today, they went to a pumpkin patch yesterday and chose a pumpking and they are doing something with them today, which is supposed to be a surprise, so it will be interesting to see what he does as once he believes something he's very strong with them and not ashamed to proclaim them.

This gives us a lot of responsiblity as parents, one issue we've had to deal with is the pledge of allegience, how to explain to him why we don't want him saying it, but also to be respectful to others, as for us, it's not just that we're not Americans (and you could argue that we choose to live her, so should support it), but we feel that pledging allegience to a flag is verging on idolatory. I also feel uncomfortable with the words "under God", to say that with full meaning should be a big deal for anyone, so the practice of saying it daily in school is not one I support.

The next issue could be veterans' day assembly, I've nothing at all against veterans' day, but I have a hard time processing that with regards to current conflicts, I prefer the British name of Rememberance Day and I'm a big fan of the two minutes silence. I know they are trying to have current/recent veterans there, so we really know nothing about what will be said and he's pretty much unaware of current conflicts, the school's idea of what is appropriate for a 6 year old might be quite different to ours.

Thursday, October 29, 2009

So, how am I doing?

I've had two full days at home, doing normal life, so it seems like a good time to evaluate how I feel it's going.

Bottom line is, we're surviving. One of the main things that was bothering me about being at the hospital was how the house, which isn't generally very tidy was disintegrating further. We have cleaners every other week at the moment and I felt my main job was to get the place ready for them coming yesterday morning. I managed that reasonably well, but I still feel there is more that needs doing before I can even think about setting up regular routines.

I'm struggling with exhaustion, narcolepsy isn't a good starting point and I've come off the drug that was making me sleep, unfortunately still having to replace it, with something that I think gives me a lesser quality of sleep (type of sleep is a characteristic feature of narcolepsy and contributes to day time tiredness). I could definitely do with being more physically fit, my plan is to start dancing again in November, but that may not be enough.

Since coming off Seroquel, I do feel my mood is lower, but it's stable, rather than volatile, which is definitely a good thing. I find this time of year hard anyway, I don't like the US way of doing Halloween and we don't have any family traditions around it. To me a carved pumpking with a light in is for the purpose of warding off the devil, so there are no carved pumpkins in this house! On facebook and in real life, I see most families having some kind of family tradition about acquiring pumpkins, whether that be at the supermarket or the pumpkin patch.

Preschool has a fall festival as an alternative to Halloween, but even there, there doesn't seem to be much understanding of the origins and smiley faces on pumpkins are a common occurance and it still has a lot in common with US Halloween, rather than the complete detachment alternative events I've been to in the UK have had.

Obviously Bonfire Night isn't celebrated here, I never really thought I'd miss it, but I do, we often used to go to my rowing club, which allowed kids to get a good view of the fireworks without the big bangs and it was an excuse to make toffee, or toffee apples.

Thanksgiving means nothing to us, so it's kind of an annoying long weekend, shops are mostly closed on the Thursday, then completely overflowing on the Friday.

Christmas is what we make of it ourselves and as yet, I don't feel we've established traditions, of the seven years we've been married, 3 were spent in the UK, 1 in Korea and 3 here and it's only since we've been here that we've had children old enough to really know what's going on. I try to keep up with traditional British christmas foods, but it can be hard to get ingredients and other things traditional about Christmas aren't easily available, such as crackers. I miss going to church on Christmas morning, here, most churchs have a service on Christmas Eve. There also isn't for us the mad dash of trying to squeeze in visits to all our relatives, which leaves me wondering what to do between Christmas and New Year.

Monday, October 26, 2009

time is ticking

Grace woke up and needed a change and feeding, which I took as a chance for me to rest and listened to "The Unbelievable Truth" a comedy panel game on radio 4. Meanwhile Banana Girl managed to spend that whole time washing her hands, or rather flooding the bathroom, thank goodness for tiles, she was happy, I could let her enjoy herself!

After feeding Grace occupied herself with thoroughly cleaning out her bowels, lovely, she needed a complete change of clothes, so I took the opportunity to give her a bath and Banana Girl "helped", which turned into her having a good look through my jewellery box whilst I got Grace dressed. We had a good discussion about crosses, she found one and identified that it should go on a necklace and even though it's decorative with a stone in the middle, she linked it to Jesus dieing on a cross, I asked her why she thought I might wear it and she told me why Jesus died on the cross and I discussed with her that I could wear it as a reminder to myself about that, or because I wanted others to know, she told me that we should tell other people about it.

Interestingly, today's devotion in My Utmost for His Highest was about that, but emphasising that we tell people because Jesus commanded it, not because of wanting them to know. I guess my take on it is that Jesus commanded it because he wants people to know, so we would also want people to know, but that perhaps in exhortations for evangelism we focus a bit too much on the side of wanting people to know, rather than bring it back to basics, that it is what we are commanded to do.

It's about half an hour until I leave for the psychiatrist, I'm going to make my task for that time to collect all the rubbish from upstairs, so off to get a big black bin bag!

Got discharged

I was discharged from the partial hospitalisation program today. So I'm home earlier than expected. I have a little under 2 hours until I need to leave to see my psychiatrist, so I need a plan of what I want to accomplish in that time to avoid wasting it!

still awake

I took my "sleeping tablet" 3 hours ago and I'm still awake, this is my 3rd night free of Seroquel and I did manage to fall asleep the last 2 nights, though Grace prevented a good nights sleep!

She's trying hard to do the same tonight, she's up for the 1st time already, but she's getting a bottle.

I don't even feel drowsy and still feel a little anxious (the sleeping tablet is lorezapam, so should act on anxiety as well) about tomorrow, not so much the hospital, but more tomorrow as a whole, I'd like to take Sausage Boy to his maths olympiad prep to see what they get up to, DH took him to the first one last week.

I'd also like to take Banana Girl to preschool, ideally leaving Grace at home, so I can walk in with her and give her my full attention.

I don't really want to take Grace to the doctors, I just don't like finding out her weight and being disappointed by it, even though the doctor isn't worried there has been enough doubt put in my mind both from the lactation consultants and how Sausage Boy's weight was handled. I'm also thinking I don't want her to get any of the vaccines she had a month ago as it seems too close and even though the doctor has been fine with it so far, at some point she might get unhappy.

However I don't feel that I'm mulling all this over in my mind, I feel like I don't want to lie still, I'm fidgity, which isn't conducive to falling asleep!

Sunday, October 25, 2009

How to cook wheat free for one meal

This is a brief guide for anyone who brins us a meal, or has us over for a meal, I'll write it using local shops, though the same general info would apply to anywhere else in the world.

Firstly I need to clear up wheat free versus gluten free, I'm only wheat free, gluten free usually means someone has celiac disease, which I, thankfully do not. Wheat for me causes inflamation, which usually means pain, I've become increasingly sensitive since I cut it out, so, for example, I reacted to eating meat balls at Ikea. One interesting aside is that I've noticed I rarely get plugged ducts, which were frequent with the other two children.

Gluten is in more grains than just wheat, if you buy something gluten free, it will be wheat free, but only requiring wheat free allows some useful ingredients you may have on hand, the main one being cornflour for thickening sauces and possibly corn tortillas (I buy the huge pack from costco and freeze in portions).

When planning a meal, either keep pasta out of your head, or pick up some wheatfree pasta, quinoa and brown rice based ones seem to be the best, both for texture and taste, in Fred Meyer it's all separate near the organic section. Consider dishes containing rice or potatoes, bakes tend to transport pretty well. As a family we've never been big on bread as a side dish, but it is enjoyed by the rest of the family, so don't worry about me missing out, I'd probably have skipped it anyway! has some great recipes, though as a gluten free family, they use ingredients which it's not worth buying for one off cooking.

For desserts, I'd skip commercially prepared gluten free stuff, it's overpriced if you ask me! There are lots of ice cream flavours that don't have wheat - skip the cookie dough! Trader Joes do a great gluten free brownie mix and Whole Foods sell a ready baked tray of gluten free brownies, someone located some cookies in Safeway that were free of any flour. My waistline could do without dessert though!


I'm having a hard time getting my head round next week. Sausage Boy has maths olympiad prep at 7.45 tomorrow morning, preschool drop off for Banana Girl is 9am and Grace has a doctors appointment at 9.45, all really annoying time gaps. Then at the end of it all, I have to drive up to the hospital, I'll probably arrive in the middle of the first group session, there could be new people, I've no idea what they will be teaching and I really don't want to have to walk through that door.

Right now it feels like the program is just putting strain on a lot of people and I just want it to be over and to get on with life.

sickness is all around

Loads of our friends are sick, or feel like they are going down with something. Banana Girl complained of a sore throat this morning and I've been coughing away all afternoon. Usually I'm the first to hit the medicine cabinet or the drug store for all modern medicine can offer us for these things, but with breastfeeding, I'm going to have to check everything, my chest feels like it could really use some guafenesin right now...

my body

Due to doing the partial hospitalisation program, I had to cancel some physical therapy appointments, in someways that was a good thing as I don't think the PT was really helping, I think my body still needs time to recover from being pregnant. Some sources suggest that people with EDS should do only light activities for 6 months, though don't mention the effect of breastfeeding at all. Lifting strollers and car seats is almost unavoidable and probably doesn't count as light activities!

Being at the hospital in the day hasn't helped either as I think the sitting as flared up my hip and tail bone to a less extent. My hip seems to be going down hill though, as on Friday I was fine taking a trip to the mall and back, but today it was sore walking home from Radio Shack, which is closer than the mall.

Sometimes I wonder why I went through the hip surgery, but then I have to remember that sometimes it is pain free, when it never was before, the problem is, it just seems so vulnerable and little things send it into a worsening spiral. So far the bes solution I've found is a particular massage therapist, who tells me that the joint capsule itself tightens unevenly. Problem is, that isn't covered under insurance and it takes an hour and I probably need to do multiple sessions.

Saturday, October 24, 2009


Grace gave us the worst night she's given us, waking 4 times! That's the kind of morning when I'm thankful for narcolepsy and having meds to help me stay awake, honestly, if it wasn't for that, it would have been very tricky to deal with our commitments for today. Sausage Boy had a dance competition, which meant I was driving on the freeway like it or not.

Some friends had offered to take our kids so we could have a night out, but we were both so tired that our night out was the local sushi bar and watching an episode of House!

I'm tired and in pain and trying to avoid over reflecting on how my mood is, I think how I handle things is a better indication than how I feel, some woman came up to this morning when I'd laid Grace carefully on the floor whilst I pinned Sausage Boy's number on and had a go at me for how I was handling the baby, I just politely said "why don't you mind your own business", when I could have clammed up, attempted to ignore her and let her make further comments, equally I could have rumminated on it all day and made all sorts of leaps in thought about my mothering skills. Instead, on her comment that when she'd seen me in August I was holding the baby like a sack of potatoes, I've just been chuckling with an image of me holding a sack of potatoes! Grace used to really like what I think is known as colic hold and it is rather like scooping up a sack of potatoes over one arm!

Dance competitions and House watching mean plenty of knitting opportunities, I weighed my yarn before I came upstairs and I'm 16g beyond my target for this week and it's only Saturday evening.

One more


Another cute picture.
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Grace - 5 months





I try to take a picture of Grace on her month birthdays, this time she's playing with Daddy! Her most recent weight was last Thursday (9 days ago), and she was 12lb1oz, so she's probably about 12.5lb now. She's rolling from back to front easily and front to back with lots of hard work! She's starting to grab things and put them in her mouth, she wanted to tast big brother's dancing shoes today! She doesn't seem interested in food, other than as another object that could potentially go in her mouth, we were at a sushi bar today and she was more interested in football on the TV than what we were eating. Because we've gone slow on vaccinations, she'll have a 5 months well baby visit, which is on Monday, at which point we'll be asking the doctor about options for one of her birth marks, I forget the official name, but she has 2 strawberry birth marks on the top layer of skin and one deeper, one of the surface ones is in a nappy area and it's become blistered and is causing her pain.
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Friday, October 23, 2009


My back is playing up badly this evening, it may be related to having carried a sleeping Grace in her car seat from the school car park to Sausage Boy's classroom, I should have got the stroller out, but I didn't want to have to deal with getting it through all the doors!

We had a fairly successful trip to the mall, picking up a butterfly costume for Grace and a princess costume for Banana Girl, however we got that home to find it had a dirty mark on it, so it's got to go back, but thankfully that can be combined with a trip to choose Sausage Boy a costume.

I pulled the exersaucer out of the garage to see if Grace was strong enough for it, which she is, but she's really too small for it, we're hitting the same problem as we had with Sausage Boy as he was turning into a toddler, that even the smallest ride on toy we could find, his feet didn't touch the floor, I don't know what his height was at a year, but he weighed 17 and a half pounds, which plenty of babies are at Grace's age (5 months tomorrow).

Soon it will be time to buy another tripp trapp chair and fish the baby set out of the garage. We plan on baby led introduction of solids, at least to start off with, rather than going with runny cereal! We offerred purees and cereal to Sausage Boy, but didn't really have much success, Banana Girl did like cereal, but it led to her refusing the breast first thing in the morning, which I'd like to avoid with Grace, I'd rather she cut out other feeds first, not that we have any kind of schedule going!


Grace seems to have figured out that she gets her food from source if she demands it in the night, which is rather unfortunate as she had been sleeping through.

I woke up feeling pretty rough this morning, so called in sick again, it was going to be a difficult day to juggle anyway as we're working with one car and everybody's day was going to end at the same time in different places.

The letters I wrote yesterday were graciously accepted. I've learnt a lot about where my boundaries lie, some of them I desire to shift, others I don't, but I'm feeling increasingly self aware, but hopefully not over confident.

Thursday, October 22, 2009


I'm just tucking into some potatoes to make sure I get something in my stomach before taking my meds.

I wrote a couple of letters I needed to write last night, but wanted to run them by a friend before sending them. I wrote them into cards this morning, they were delivered this afternoon, but last I heard were still unread.

It's in God's hands now, I know I'm right before him, I've confessed my sin and stand righteous before him due to the cleansing blood of Christ! Isn't that amazing? If it weren't for that I'd be waiting for human forgiveness that may never come.

It occurred to me that my nausea could be from cutting down the seroquel, so I googled it and this is indeed possible. However I believe I do need to be off it and whilst I don't feel great, it's not awful either. The psychiatrist I saw on Wednesday seemed surprised that I was on it, I think the logic for starting the similar drug was because I presented late in pregnancy and the psychiatrist wanted to get my mood up by the time of the birth, but I've ended up on it for too long. So it's possible I'll feel worse tomorrow as I take half yesterday's dose tonight, then no more.

Andrew is pretty frazzled right now, I don't know how I'll feel tomorrow and Sausage Boy has an event at school in the middle of the day that I really want to be at and the hospital okayed at the beginning of the week, but I'm not sure how that will all work out as we're working with one car tomorrow.

Then Monday we have a well baby visit in the morning, which means vaccinations, so I want to be present to nurse afterwards, then another appointment with the new psychiatrist in the afternoon, so I'm really not sure how my future participation in the partial hospitalization program will work out. I think right now all I can do is wait until tomorrow morning and see how I am feeling.

Still sick

Woke up feeling just as bad as last night, so had to call and say I wasn't going to make it to the hospital today. Not sure what to do with myself, I definitely feel worse sitting or standing than I do lieing down, but lieing down all day probably isn't a good plan.

Wednesday, October 21, 2009

Feeling sick

I feel sick right now - Americans, that's nausea! I haven't changed any meds such that this could be a symptom, I'm pretty sure it isn't mood or anxiety. Occassionaly I get a migraine where the first symptom is feeling sick, but that's not their usual pattern. I took an anti nausea pill, but I only have ones you need to swallow, not orally disintegrating ones like I've had previously, it stayed down, but it was touch and go. I hope I'm not getting something, lots of people out there are sick right now, I'd quite like not to be one of them!


The schedule at the hospital is actually fairly loose, we do check-in each morning, where each of us is asked how we are and how the evening has gone, along with specific questions about things like sleep or substance use, based on that, the therapist decides what we'll do that day.

The first hour is mostly learning about a topic, such as boundaries, feelings, anxiety and the second hour is the same topic, but more about tools and skills. It's very loose though and in someways the main difference is there is more talking in the 2nd hour.

The first hour after lunch is usually purely talking, we each share and question each other and how things are going, which is of course confidential!

The last hour is art therapy or meditation, followed by check out, where there are two main questions, what are you going to do for yourself tonight and are you safe?

You can get pulled out to talk with the nurse or doctor and you are allowed to go to appointments, family commitments and the like. Today I went to see my new psychiatrist at 2, so I was basically only there for the morning, then a very brief check in before I left.

What I'm finding challenging right now is finding the balance in the information I'm receiving, when it comes from quite a different world view. The topic of boundaries was particularly challenging, as I think that it's possible to set a mature boundary that is still sinful and that an undeveloped boundary might well not be sinful, though it may easily expose you to sin. Selfishness is not considered to be wrong, but a necessary protection of self, which I completely disagree with.

I hope to talk tomorrow about what the plan is for discharge as I was led to understand that it was usually upto ten days that you go to the program and I think discharge in the middle of next week rather than on the Friday might actually work better.

Reasons I blog

I've been reflecting on why I blog, originally, I started this blog to be an outlet during what I expected to be a difficult pregnancy. I kept it annonymous and shared it only with people I knew online and my husband. Somehow I failed to communicate that I didn't want people in real life, particularly my family and close friends to know about it. My family started reading, but I don't think it changed how or what I wrote, writing was still cathartic for me.

It then became as place I could share photos and news about the children as well and a good place to talk about crafty stuff, even though I know no one is holding me accountable to using up a ball of yarn each week, posting pictures and progress here does help me stick to that goal.

One of the benefits I've discovered in the past few days is the ability to go back and read what I've written, it's been good for me to track both negative and positive emotions. I know a diary could do that, but would I have kept a diary for over a year? Probably not, which is why I'm thankful for this blog and why for now it will continue to exist.

Tuesday, October 20, 2009

Just a quicky

My last post must have scared a few people, I'm choosing not to read any comments right now and to stay grounded in the real world.

God is very good, I took the info that Seroquel might cause paranoia and it gave me hope. I'd love to turn to God more easily, but in His great wisdom, He knew that wasn't what was going to save me last night and I praise Him that He did save me - Christians do commit suicide and regardless of how we die, in the end, only God knows whether they are sheep or goats (see Matthew 25).

Stuff happened this evening, good stuff and I am deeply thankful for the people that helped that happen and to their families who were left to manage without them.

We also got home to find messages on the phone about cancelled appointments with the new psychiatrist, so I'll see her tomorrow rather than Monday.

Bad night

I'm having an awful time of it right now, the situation is too complex to explain, but I've got the closest to suicide I've got in this episode of depression and no one seems to care.

I was googling the various medicines I had around to figure out what would work and I found lots of references to seroquel causing paranoia, given that my paranoia seems to be the major feature right now, this is something I've got to act on, however, I know from the one time I did skip a dose that the next day was dire, so I'm not skipping my dose, but I want off this medication ASAP and I'll be asking how to do that tomorrow at the day program. Until I found that out, I felt I had no hope.

People around me are telling me that my view of the world is narrow and getting narrower, I really hope that this explains thing, otherwise I've no idea how we break this cycle.

Monday, October 19, 2009

Ehlers Danlos and Narolepsy

I scanned through my previous posts to see if I had talked about this, it's been on my mind a lot lately, but I don't think I quite got it into blogland!

To me it seems EDS and narcolepsy are a particularly brutal combination of disorders, both are relatively rare, so are often not well understood by those treating you. EDS is something you learn about in medical school, but then forget about, I have to spell it out to most doctors! At least everyone seems to have heard of narcolepsy, but they aren't always sure what it really means, as one doctor said to me, narcolepsy is pretty well known about, but still rare enough to only see one patient in a lifetime.

EDS is linked with chronic pain, in the grand scheme of things I seem to do quite well, I've had a bit of luck (or God given help, in my book) to randomly find good doctors and other therapists to help me manage it as well as some discernment to walk away from those who I think aren't going to help. So for me there are two types of pain, some without obvious cause, and some with.

For example, today my hands are hurting, that's both hands hurting evenly, yet today I've not knitted or typed much, but have been writing and drawing using my right hand, which has been injured in the past and it wouldn't surprise me if it hurt in a certain way, but in fact I just have generalised pain in both of them. That's the part of EDS pain that it's difficult for almost everyone, even EDSers to understand.

On the opposite end of the scale my hip is sore, that I don't find surprising at all, we know there is arthritis in there and I'm aware that the joint capsule has a tendancy to tighten up unevenly and cause pain. This is still part of EDS as I would almost certainly not have injured my hip the way I did if it weren't for having EDS (my hip injury occurred during the birth of my 2nd child, who would probably have got stuck and been delivered by c-section if it wasn't for EDS).

So as I'm coming home at the end of the day, today that was from the day program and picking up all the children, I'm in pain due to EDS and I'm hitting a tired spot because my narcolepsy medication is wearing off. If I wasn't in pain, I might have been able to beat the tiredness, if I wasn't tired, I might have been able to beat the pain. Thankfully today my husband was with me, so he brought the carseat and the sleeping baby it contained inside. Banana Girl had fallen asleep in the car, so he transferred her to bed, I'd have had to leave her in the car, thus requireing me to dash out every few minutes to check she's ok. Sausage Boy needed to do homework, I found the page and told him to get going and today my husband finished off with him, allowing me to have the cup of tea and a sit down that my body really needed.

We are also blessed today that members of our church are bringing us meals, so we have something warming on the stove whilst I feed the baby and write this blog post, but an ordinary day would include dinner prep too.

This latter end of the day is hard for all families, or so I'm told, add in my needs and it become really tricky, I have responsibility to the children, yet push at my physical boundaries to do the best for them at this end of the day is probably going to lead to burn out - and that's if I'm having a good day. It's hardly a surprise that I'm struggling with anxiety right now!

We desparately need to find some help for the end of the day, apparently as long as I find someone over 16, I can give them cash in hand and it's there responsibility to sort anything else out, though it would be good to corroborate that statement. In the UK anything involving children would be a lot trickier than that! I'm unsure how to go about finding someone and it's one task I'd really be happier handing over to someone else.

I've never met anyone with either EDS or narcolepsy, let alone both! With EDS, I have met the odd person who knows another person with it, but my real life experience of meeting anyone with narcolepsy is precisely zero.


Well, I got home to a message on the answer machine, left just minutes earlier from my psychiatrist saying she is dropping me. I'm making myself a shell and just letting it bounce off and trying not to care. In many ways, the fact she drops me just now is probably proof that she's not the right doctor for me and it actually makes it easier for me to justify changing doctors, which I was planning to do anyway.

What's really frustrating is after meeting with the doctor at the hospital, she wanted me to stay with my current doctor and keep my appointment this week, even though it would mean missing some of the treatment time. I think at least she should have carried on until I had found another doctor.

It also bothers me that if she can't cope with me and can't recognise that until a time of crisis, then should she really be practicing psychiatry at all? My crises have actually been very minor when you consider the grand scheme of things in mental health.

I'm still in two minds on the day program, part of me sees that I can learn useful stuff there, but part of me says you can't fix me, you can't suddenly take away my physical pain, or my daytime sleepiness, you can't suddenly make looking after three kids easier, which at the moment, regardless of depression, seems just a little bit too much, though I'm tantilising close, which is frustrating.

Sunday, October 18, 2009


I've been looking through my past blog posts and it's clear that anxiety has been a bigger problem than I've realised, so I'll be sure to mention that to the relevant people over the next few days.

Today seems to have been a day full of anxiety, for various reaons I wasn't able to go to church, which meant I was home with Grace for about 4 hours. Now I'm feeling anxious about tomorrow.

I'm not quite sure what will happen, usually the day will begin at 9.30, but tomorrow I have to be there at 9, but I think I see a nurse to do intake stuff, not a psychiatrist, but it seems that I will see one at some point, it would be silly if I didn't, as this treatment means I've had to cancel my appointment with my psychiatrist.

I'm trying to view it as treatment, rather like chemo for cancer, rather than failure, but it's hard to do that, because mental illness is so tied up with who you are and your personality. A different personality might deal with it better, a different life situation might make recovery easier etc.

I'm really grateful to friends who are helping to make this work, but equally hurt by the odd comment here and there and struggling with coping with the demands friends and family are making on me for me to do this program, though I'm not sure what they'd do otherwise as not agreeing to do or not do a handful of things doesn't suddenly qualify you for inpatient treatment.

What a cutie


Here's a photo I took this morning. She remains our smallest baby for this age, weighing in at 12lb1oz on Thursday, at current rate of progess she'll probably double her birth weight at 7ish months.
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Saturday, October 17, 2009

adventures with sleeves


How much knitting I get done seems to be a reasonable reflection of my mood. I finally picked it up today, whilst we watched an episode of House, on subsequent weighing, it seems that I'd made a lot of progress at the beginning of the week and even though it's only Saturday evening, I have in fact met my target for this week.

The ziploc bags are to prevent the yarn unrolling too easily and being liable to tangling, there has been the odd annoying momement where the ball doesn't seem to want to unwind, but mostly it's worked, both for transporting in my bag, and the actual knitting bit!

The next section requires use of a cable needle every sixth row, in anticipation of this I started carrying on around with me, which seems to mean that I end up spending significant amounts of time relocating it!
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