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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The new plan

In an effort not to be ashamed of what has been going on, I've decided to be as open as I feel possible here. Some stuff is relational stuff, not just with my spouse, but others too, I have to be respectful to them and keep that stuff off here.

On Friday night it became clear that I have issues with paranoia and not seeing things as they really are. It does seem to be that I magnify small things in the correct direction and that things that aren't there at all aren't an issue, no voices in my head, no psychosis, just making more of a deal out of something simple like an unreturned phone call than I should.

As a result of this some friends encouraged me to consider assessment at a local behavioural health facility (the politically correct word for loony bin!), I agreed to that and it was suggested that I consider their day treatment program, to which I eventually, with great trepidation agreed.

It begins on Monday morning, they couldn't give me an exact timetable of what would happen, but it sounds like it's two approx one hour sessions of stuff in the morning, lunch, then the same in the afternoon. The idea is that the baby will be brought at lunch time for me to feed her, the intake person we saw seemed very supportive of that.

I'm still pretty convinced that I "just" have severe post partum depression, but that because of particular dynamics in our household and family situation that it presents slightly oddly, that what my psychiatrist calls "acting out", isn't a mood swing or a cry for attention, but more related to my inability to deal with situations, both because of lack of skills and my depressive illness.

There, I've said it, lack of skills, one of the things they teach in the day program is various skills for coping and dealing with difficult situations.

The good thing about a day program should be that it's less dehumanising than an inpatient program, without all the hours of boredom, instead of being completely cut off from the outside world, I get to come home each day and stay involved with real life too, though that is a bit scary, as I think the sessions will take a lot out of me physically and emotionally and people around me are not just asking that I take the step of going into this program, but also many other things.

Thursday, October 15, 2009

tough times

If it's not one thing, it's another, at least that's what it seems like in this house!

I had an appointment with my psychiatrist on Tuesday afternoon, it started with her telling me she'd spoke to my neurologist and he hadn't been able to confirm that I had narcolepsy. What? I was stunned, did I miss hear him 2 and a half years ago? Apparently I'd never done the main diagnostic test, but she couldn't remember it's name, erm, well, it's called a multiple sleep latency test and I've done it! We continued to go round in a circle with me saying what tests I had done and when etc. and her continuing to disbelieve me.

Then she said there was no medical explaination for what had happened last Wednesday and tried to blame it on anxiety, seeming pleased with herself that we'd apparently had a "difficult" appointment that day. However she did still say I shouldn't take Cymbalta. However anxiety also doesn't give an explaination, I know I wasn't anxious, I don't know what happened, I do feel pretty confident it was related to the Cymbalta as the timing fitted so perfectly with the way the dose would have been released into my system.

After that I don't really remember much about the appointment, I was pretty distraught over the the narcolepsy thing. Afterwards I had to go straight to pick Sausage Boy up from school and as soon as I got home called the neurologists office, I got a call back pretty quickly from his assistant, who hadn't even bothered to get my chart out before calling me, she started off by trying to tell me I needed to book for this test, I pointed out that I'd had it and she tried to tell me I needed to do it again, I pressed the point, did the records show that I'd had it or not, which was when I found she wasn't even looking at them, then I sat on hold for a while and she came back on the phone and said oh I had done it and no I didn't need to redo it and to come in for an appointment. I asked them to call the psychiatrist and explain their mistake.

To their credit, they did do that and she called and left a message apologising, which is pretty rare for a doctor to do. However, what they now want me to do is to change meds to one which I've discovered is uncompatible with breastfeeding, though I don't know whether that thought would have crossed either of there minds. So the appointment tomorrow could be interesting, particularly as neither Andrew nor I think the current medication is causing any problems, if anything it's days when I don't take it that are problems.

I went last night for an assessment for a type of group therapy called DBT, I tried to go with an open mind, but I really don't think it's the right thing for me at this particular time, the commitment is just too great, it's 28 weeks long! They also want you to be established with an individual therapist and as last week I decided to seek a Christian therapist and am thus just starting out, that also doesn't fit. In particular with this group therapy, they make you commit financially to the full 28 weeks and even my psychiatrist was suggesting "try it for a couple of months", which basically isn't allowed.

I met with the new therapist this afternoon, it's hard to say from the first meeting what I think as it was mostly just her asking questions.

Tonight will be my first opportunity to go to women's bible study at our church, they met for the first time last week, when I was in the hospital.

I slept very badly last night, it seemed like everytime I got close to sleep something would disturb me. Andrew gave Grace a bottle very late, probably about 3 hours later than usual and he disturbed me coming in to get her and coming back again to go to bed himself, despite that, she woke up earlier than usual at about 20 past 5. I think I got about 3 hours sleep last night!

Monday, October 12, 2009

Facebook note about Wednesday

Some of you have asked what it was that I reacted to, it was Cymbalta, an SNRI type antidepressant. It comes as delayed release capsules, I took the starting dose of 30mg at 10.30am, as instructed by my psychiatrist. The first signs of a reaction started to appear mid afternoon, I felt like I was running a fever, but when I took my temp, I wasn't. By about 6.30pm I was completely unable to move or speak, I could blink and just about squeeze someones hand and make sounds when exhaling. All I could do was pray and eventually someone called 911.

The 911 people were fantastic, they saw pretty quickly that there was something wrong, mostly due to observing that my pupils were dilated. They took my blood pressure and it was only slightly high, they didn't seem to think that was significant, particularly because Andrew said I had high blood pressure, he was referring to me having suffered high blood pressure at the end of pregnancy, my BP the day before had been 120/80, but he didn't know that, my BP as taken by the EMTs was 150/100.

A second ambulance came with what I think had people with more medical training, they decided I was stable enough to transfer with the first ambulance guys, but it took all 4 of them to get me into the ambulance. Thankfully as Andrew's mum was with us, Andrew could get straight in the car and come with me.

Unluckily, the nurse that met me on arrival was not particularly kind to me, I don't think she believed that I really could not move or speak and because they had the information that I had postpartum depression I think she was treating me as if I was actiing up. She kept asking me how old the baby was, but 'f' is a sound you really need your tongue to make, so I couldn't tell her, though I tried hard. Fortunately the ambulance guy stayed with me a while and was telling her that I was happy and he could see my eyes light up when my husband spoke to me and stuff like that. But she still acted as if I was fighting her rather than just completely unable to assist in getting a gown on.

Because Andrew had travelled separately he was waiting outside for them to check me in so I appeared in the computer system and he could get a sticker to say he was visiting whatever room I was in! Thankfully he was with me before the doctor, otherwise any kind of communication would have been interesting.

What I didn't manage to communicate was how much pain I was in, I'd lost the ability to move with my neck in an odd position and various bits of me were agony as I was unable to move to take the pressure off them. He ordered blood work and zofran for the nausea I was experiencing and benadryl (an antihistamine) to deal with the reaction.

My friend Anita was also there, as I'd called her earlier in the reaction and it was her calling to check on me, then dashing over when Andrew said I couldn't speak that had triggered actually calling 911. It was so helpful having two people there as when I tried to communicate they could guess and feed of each other and listen for my reaction! It also meant Andrew could go and get some food without leaving me alone. At my request, she read the bible to me, which was fantastic.

Then movement gradually started to come back, my tongue and neck first which meant I could try and ease the pain there my stretching and also communicate again! The doctor came back and told me that they were admitting me and I asked him about getting something for the pain and he said yes, then must have got distracted and forgot to sort it out!

I finally got some, though it didn't completely take the pain away. Meanwhile the automatic BP readings every 15 minutes were climbing and setting off alarms, though no one came running!

When the hospitalist arrived to sort out admitting me, my blood pressure had hit 170/132 and he said pain and anxiety could be causing that, I didn't feel anxious, as I felt totally confident in God having a purpose of this experience. However he said that because it was an antidepressant reaction that anti anxiety meds would actually help restore normal brain function, so I said ok and he had the nurse give me some of them and more pain meds there and then and wrote me up for more once I was on the ward.

Most of what happened the next 24 hours is a blur, I guess because of all the drugs. I had an MRI, which was normal, as we expected it to be, but I think they needed to comfirm I hadn't had a stroke or something.

I came home Friday morning, emotionally I'm doing well, physically not quite so well, I think it's just going to take time, there must be plenty of stuff that an MRI can't see that still needs to heal, I think various receptors in my brain must be all confused!

Just reread my last post!

I just reread what I posted on Thursday - quite a few spelling and gramatical mistakes, not that those are usually my best area anyway!

I was still in the hospital at that point and fairly drugged up, I was getting pain meds and antianxiety stuff, even though I wasn't feeling anxious, the doctor said that because this was a reaction to antidepressants, the antianxiety meds would help with restoring brain chemistry. I did need them to get the MRI done as I struggle with claustrophobia.

I had the opportunity yesterday to write a fairly detailed note on Facebook about what exactly happened on Wednesday, I'll copy it here soon.

As for how things are now, well, that's a relatively long story. Andrew's mum broke her wrist yesterday falling down the stairs whilst carrying a laundry basket, they had to put her under some kind of sedation to set it, Andrew had left her at the ER after they sorted out all the admission stuff, then we had dinner and I went back to be with her, I arrived whilst she was under and was sent away, I don't think she'd have been aware whether I was there or not and I think they don't like people to see what people are like under that kind of sedation, I'm glad I saw what little I did as, though I saw her moaning in agony, I knew afterwards what she'd been through and could rejoice that she genuinely did seem unaware of it, the nurse was also glad someone had arrived to be with her as they wanted me to keep her talking to check she was ok after she'd come out of it. It was amazing to see how fast she changed and how quickly the stuff must have got out of her system. She went to see a hand surgeon this morning and he was pleased with it, so it looks like she will avoid surgery.

I'm not fully recovered from my ordeal, but do seem to be on the mend, this morning was quite hard getting MIL to the hand surgeon, then Banana Girl to her well child visit, with Grace in tow, then back to pick up MIL. Andrew will pick up Sausage
Boy from school and I do have a plan for dinner. We also have our weekly shop arriving today, I finalised the order last night when I wasn't feeling great, so it could be interesting!

Thursday, October 8, 2009

From one crisis to another

My psychiatrist changed my meds on Wednesday, from the SSRI Lexapro, to the SNRI Cymbalta.

Either it was a major coincidence, or I had a severe reaction to the drug, eventually leaving me completely paralised, not able to do anything, but give a slight squeeze of a hand, breath and in doing so make some attempts at sounds and also some eye movement.

Somehow, despite a doctor in the house, no one seemed to realise the seriousness of the situation and eventually it was a friend ringing and finding out that I couldn't talk that between them they managed to determine I needed help and it was going to have to be an ambulance to get me to the hospital.

The first thing the paramedics noticed were my pupils being extremely dilated. They also recorded my blood pressure as 150/100, I'd been 120/80 the day before. My BP continued to rise in the ER, eventually hitting something over 132, which sets all sorts of alarms off!

The gave me benadryl (an antihistamine) via IV and it seemed to work as I regained movement in my tongue and neck, then hands and feet and by the time I was admitted to the ward I could move pretty well, though not with full range of motion or strength.

My MRI scan was clear, which I presume means no lasting damage, currently reading, writing, knitting etc are all challenges, so I'll say goodnight.

Wednesday, October 7, 2009

Sad News

We just heard today that a much loved member of our former church, Beryl Lawry, died yesterday, she had successful major heart surgery on Monday and was listed as critical but stable, but the LORD took her to join Him.

She was a lovely lady, bright and witty to the end, I've heard the tale of the only recording of the Omani national anthem being sat on many times, but she told it best. I wish I'd had a chance to hear her talk about Bletchley Park in the war.

She joins her husband Tod with the LORD, she leaves a family, though I don't know details of them, they will surely miss her.

Praise the Lord for the life of Beryl, her funeral will be a great testimony.


I was 30 on Monday, I was not very impressed by being 30, however it did turn out to be a good day. On Sunday night I had decided (or rather prodded by God) that I should start getting up at 6, so I could read the bible and pray, so my 30th birthday began with the beeps of my alarm clock, taking my medication, putting my dressing gown on and creeping downstairs with a pile of books.

Very quickly Andrew appeared, bearing a gift bag (actually it was a shopping bag from a shop that I'd bought some gift bags from...), I have to confess that I was a little disappointed when I found my present was about the size of a 100g bar of chocolate, though by feel I could tell it wasn't that. It turned out to be a leather bound copy of "My Utmost for His Highest" by Oswald Chambers, which I'd forgotten I'd even asked for. I was gracious, I hope, and said thank you. It's a book which has a verse and devotional for every day of the year, so each morning, I've read the day, it's now been 3 mornings and today I thanked Andrew from the bottom of my heart, for the best earthly gift I've ever received.

With Andrew's mum here, I was really able to take the day for myself, I had a shiatsu massage and acne facial at the proclub and enjoyed doing some sewing in the afternoon. For the evening, Andrew had arranged dinner for us and 2 other couples and possibly my former dance partner, just as we were leaving he texted to say he could make it, which I was pleased about, though a little nervous about the dynamic. It was gift enough for them to be there, but the two couples who were there both gave me gifts, which I'm looking forward to digging into, one was a book of cartoons, the other a recipe book. I'm very touched that everyone came expecting to pay for themselves, joined in fully, enjoying drinks and desserts, but that my wonderful, generous husband wanted to bless them and thank them by footing the bill.

Today it's Andrew's birthday, not quite so special as he is turning 29, I found it very easy for once to know what to give to him, as after a trip to the gym recently where his carrier bag split, he dropped his t-shirt in a puddle and lost a trainer under the car seat, it was obvious that a gym bag and other items were something he needed. Bags were on a very good sale at the store yesterday and I also got him moisture wicking t-shirt and shorts and some sports socks and prayed he wouldn't find this gift too cheeky or critical, thankfully, he seemed pleased! We will celebrate his birthday by taking the children for a swim, then eating dinner at the bistro probably in their pajamas. The card I got him had two giraffes kissing, which is kind of a private joke between us after a story my grandad had told us about first meeting my gran.

Two sleeves together


I managed my knitting target by the skin of my teeth last week, I knitted all of one of these sleeve bottoms, plus a bit of rib to finish off the left front on Sunday, now I've knitted the bottom of the 2nd sleeve, I weighed it and found it took 20g of wool, i.e. 20% of the total work required in a week to keep on target. It was probably about 2 hours knitting that I did on Sunday to meet the target, so it's about 5 hours a week to keep on target, I'll be trying not to leave it all until Sunday though!
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