you matter

four.5 hours of sleep

I don't think I could possibly stress enough the importance of sleep! I truly can see what inadequate sleep does to my body, especially since I already have to deal with daily fatigue from my dumb broken thyroid! (lack of sleep effects my heart rate and gives me chest pain and makes it hard to breathe as my main symptoms.) My nights have always been very scattered, and being a Night Owl doesn't help; I used to blame it on being a Mom and having to go to kids in the night, but as they are mostly sleeping through the nights now (hooray!), I realized I couldn't say that anymore. (boo!) It turns out that I just can't fall asleep easily, and I can't seem to stay asleep for long.  

Last week I was dealing with insomnia of sorts--- I don't think it was a true case of it, as I would eventually sleep, but I would be up until 3:30am some nights, willing sleep to come. It's not that I had my mind filled with thoughts or worries either; I had a blank mind! It was frustrating!

Imagine my delight when I finally slept last night! A whole four and a half hours!!! 

In.A.Row.

With dreams!

 
I am one happy mama again!!!

recovering

This is just a gentle reminder to myself, and to anyone else with chronic pain and illness.

I understand.

Some days will be rough and you'll be on the couch resting, trying to breathe, and that's ok. Don't beat yourself up. Some people will understand (hopefully you've surrounded yourself with more of those people) and some won't (hopefully you've disregarded their words and realize they are from those who just don't get it.)  


Good days will come again!

cardiology update

After being late for my Cardiology appointment last month (I thought for sure that it was at 1:30, but when I arrived just before that time I learned that it was actually at 1 and I was considered a No Show. Oops. My bad.), I finally saw my cardiologist this morning. (that is, after he was an hour late. I thought he was getting me back or just forgot about me, but it turns out he has a 3rd year student doctor with him today and she didn't appear to be too bright)  He said that my latest ECHO shows a "normal" heart. The percentage was 65, which is perfect ("like an Olympic athlete.", were his words!)....not that I know what that means when I relay it back to someone, but it made sense in the office! 

My Mitral Valve Prolapse is still considered "mild" and my regurgitation (where the blood falls back out past the valve) is "Mild to Moderate." He still can't hear the "click" when he listens to my heart, which is also good. (MVP is usually diagnosed by an Echocardiogram, as in my case, or by hearing it on a stethoscope. Your heart will sound like this: thump..click-thump. I thought that sounded musical!) 

As for the fatigue, chest pain, lightheadedness, numb or tingly fingers or toes, or flip/floppy heart palps and breathlessness that I occasionally get, he just said that it is hard for me being a mom to 5 kids. Which is the excuse my own doctor gives me as well. Argh! It's so frustrating hearing that! Funny, how I never use that excuse!

 My BP is a bit high, so he is putting me on a med called Coversyl (the box say it's Perindopril Erbumine if anyone knows what that means) and is going to get me a free BP machine. I see him in 6 months to see if there is any change!

So that was that!  I ended up leaving feeling good, despite not getting any real answers on my other symptoms (which he asked me if I had). I am going to rest on the fact that this specialist says that my heart is doing well, is considered normal, that I had this since birth (it's in the family; my Opa has this as well) and that I will continue to have this. According to his tests and reports, I am doing well. So I guess that means I continue to keep my anxiety down with breathing exercises and Bible memory and prayer, which seems to help so far.

Foggy Moments

Please excuse the absense, it's been a bit of a crazy busy June so far. It usually is, but this one seems to be more so. There's been a lot of end-of-unit field trips, birthday parties, and bbqs, and not many quiet evenings, lazy weekends or early nights. Then you add into it a wonky thyroid and medicine doseage changes and you've got a mixed up me.

I've had a few "brain fog" moments this week. Remember me talking about that last summer? It's used to describe symptoms such as forgetfulness and inability to focus. I just can't seem to think straight lately! 

My not-so-steller moments include getting ready for school one morning and not being able to find my glasses. I thought I had put them on top of my dresser, but the pair on there did not look familiar. They were the same purple-red colour, but I didn't think the design on the arms or the thickness was correct; this was an old pair.  So I looked out on the kitchen counter, another favourite place to leave them, but no luck either. So back to my room: I thought for sure that's where I put them the night before!  Seeing as it was getting later, I needed to just grab a pair and go. To my surprise, when I put on the old pair on the dresser, I could see perfectly fine! There were indeed my current pair! I felt a bit silly. How could I forget what my glasses looked like?

My next incident happened yesterday when I went to swith the clothes from the washer to the dryer. I walked into the basement and opened the washer, which is the lower machine in the stack. When I reached in and touched the wet clothes, I sighed in annoyance.  Why were they wet? Did I not turn on the dryer? Argh!
....and then I remembered they were supposed to be wet: this was the wash machine! I came down to put the clothes into the dryer!  Sheesh!

And then tonight, I found my thyroid pill on the counter. And now I'm wondering if I remembered to take it this morning!  Oh great!

Silliness.

I need sleep!  And some quiet nights!  
Just a few more days left of this school year....

just breathe (wordless wednesday)

ETA: (ok, so that wasn't very "wordless". oops.)

My bra tried to kill me

My day started out as most mornings go. I begrudgingly got up to the alarm and I wake the kids; I help get breakfast for the boys and encourage the Olders to eat while they can. I remind them to pack their lunches in their backpacks and help search for missing shoes and then I send them on their way to school. After an hour (sometimes more), and definitely after a tea, I finally get around to getting dressed. It was as I was changing into my shirt and my bra that the pain arrived.

I love my new bra (and my Hunny who bought me a whole bunch of expensive under-things. I haven't spent that much money on these things in years--the joys of being a mom!) I love how it fits and makes me feel.  However, these feelings of typical comfort and sexiness was not to be today. Instead, my chest felt compressed, as if in a vice. Instead, it felt tight and bound.

Pain started in my sternum and I felt breathless within minutes of putting on that new and beautiful bra. So much so that I had to take it off.  I'd like to say that the pain left soon after, but that was only wishful thinking. The pain moved up my sternum and radiated to both sides of my chest, with a crushing grip. It felt as though I was in an incredibly tight bear hug.

I am thankful that I have a diagnosis of Tietze Syndrome and can see the symptoms and know how to deal with them, although I've never had my bra bring on a flare up. That sucked.

Actually, I disagree with the doctor on the Tietze diagnosis and feel it is more likely Costochondritis.  Tietze is painful inflamation of the ribs and cartilage in the upper chest, often effecting the second and third ribs, causing swelling. Costo is painful inflamation of the joints between the cartilages that joins the ribs. The pain can be felt all over the chest and into the shoulders, and is "sharp and stabbing in nature." (hmm...that sounds familiar)

And, yes, that picture (which I got off of a Costo support group on FB) really IS what it feels like.  Whenever I get a flare up, I often wish I could rip open my chest! It hurts. It hurts to move, and to breathe. It generally really really sucks.

Hopefully this pain will not last long. That would be nice.

I don't have a diagnosis of FM, but I did have a Rheumatologist tell me years ago (when I was suffering with a painful back) that I "most likely" have it, but it's too early to tell for sure. I'm not too sure if I do or do not, but I do have many of the trigger points, just not all. I'm not too worried about it, since, well, I have other health mysteries to figure out! But I wanted to add the picture above to show you the symptoms of Costo.

*just to clarify, costo and tietze are incredibly similar. A lot of doctors still think they are the same. But in Tietze, you have swelling along with the cartilege pain. You don't have that with Costo. I am still trying to see if there are other symptoms and if I do actually have swelling. (I haven't noticed yet)

The nice thing about both is that doctors (and the internet) wants you to believe that it only lasts for a few weeks. Okay, that's only nice if it were true. I think that it can be true, depending on what caused it. If you were given a diagnosis of it after a sports injury, then yes, there is a chance you can recover completely just fine. However, most of us with this, have it due to an autoimmune issue. (which is why many will also have other health concerns, such as FM or even Hypothyroidism, like me.) But the other other nice thing is that the severe pain comes and goes. You can have a flare up (like me), and you will be in a lot of chest pain, but it will eventually settle for a bit. But it will come back. But at least you have that break for a bit.

I'm waiting for that break again. It's been three days now.

Thankful Thursday

 Welcome back to Thankful Thursday, a feature started by Louise at Talk Nerdy to Me, where we look back over our week to remember our blessings.  It is so good to see the good things that have happened, especially if you have had a particularly tough week. Being grateful is good for the soul. Here are just a few things that I am thankful for...


1. digging

We began to dig up a bit of our backyard this weekend for a new veggie garden. It was a family affair, with even my mother-in-law coming to help out!  (not that we needed that many people for a small patch, but it was good to all be involved)  I'm not a big gardener (I tend to kill plants) but I do enjoy digging in the dirt!

2. Bryn's heart

I took the kids to the park where there were two other kids, a little boy around two years old and a baby girl. The little boy wanted to go on the turnstile (what do you call that playground toy that spins??? we used to call it a Sick-mobile as a kid!)...the merry-go-round-thing (I'll have to take a picture of it next time) with Eden, and Rhys,  so Bryn would push it slow enough for them to be spun but not fast enough to get flung off! When his Mom said it was time to go home, the boy started to cry, and so Bryn did the sweetest thing: he put his arm on the boy's shoulder and got on his knee and tried to comfort him in words. It was such a gentle thing for him to do! I don't think it made the boy less sad to leave, but the gesture was so touching. I was impressed with him. His heart is so good and open to the Lord.

3. Beautiful weather

It was up to 16 degrees this weekend! The kids were in t-shirts and playing outside and it was oh so beautiful.  I told my hunny, "I don't want to alarm you, but even I am getting warm!" I am always cold (dang hypothyroidism) but I took off my sweater for a bit! Hooray! Spring-like days sure give hope and spirit.


4. Worship

I love music. I love to dance. I love to sing. Music just speaks to my soul. Our worship singing at the beginning of our church service is always one of my favourite parts. Our leader sang this song, which I had never heard of before, and it was so touching.  It's called "At Your Name" by Phil Whickham. Yahweh Yahweh! We love to shout your name!

5. Fellowship

My BSF classes are on Spring Break this month since schools are, but a few of the ladies in my group got together for an evening of chatting. I love that our group is close and that we can take time to share our own stories of how God is working in us. In meeting like this we strengthen our own faith, and we gain encouragement, and we find God bringing things to our minds when others speak the truth. I am thankful for how He works in each of us and yet weaves our stories and lives together. 

6.  guest lecture

My Husband is a Machinist and the place where he works often has students walk through on a tour to check out different shops and how they run. After speaking to a group in the Fall, the Instructor asked if he would be interested in coming in to teach! This week was his second time guest lecturing at University of Fraser Valley. I think he really enjoys teaching; he does seem to have a natural ability to lead groups (he has been teaching our grade 5/6 class at church for a good 7 years!) and a passion in his industry. Who knows where this will lead, but I am thankful for opportunities for him to use his talents and for chances to try out other ways to work in his career.

7. heath changes

My sister-in-law has a ton of allergies, many of them food-related, that makes life difficult for her. To help combat her Jobs Syndrome, she has been having blood transfusions for four years on a weekly basis. This week, she went to see how her allergy to pineapple was, and happily discovered that she is no longer analyphalactic to them! Hooray!  In November, she will see how she does with latex! Then we can have a pineapple and balloon party to celebrate!

8. Provisions

Sometimes, okay oftentimes, we are living paycheque to paycheque and we need to be creative to stretch out our food and gas those last two days before payday. I'm sure we aren't the only ones! It's not easy, but it is teaching me to trust and wait for the Lord to provide. I admit that I am still working on that. It's easy for me to say that I have faith that all of our needs will be met, but I sometimes don't live like I believe it. I am so thankful that He is willing to be patient with me, and to keep giving me opportunities to learn. I am also thankful that He does indeed provide, even if it is through an insurance cheque for B's dental appt last week. 

9. Sunbeams

I love my little couch (well, actually I don't and would like it replaced, but I love that I have a couch and that it was free...) and I love the sunbeams that fall across it during the afternoon when I am resting or writing or planning or reading or drawing or...you get the point.  I have done a fair bit of resting this week thanks to my thyroid and the dumb time change! I am thankful for furniture, sunbeams and restful days.

10. lettering

I was on Instagram the other day checking out other posts similar to mine and was encouraged to keep working on my lettering. It's something that I have always loved to do, and grew up watching my Dad paint his own lettering signs, but something that I never worked on to grow in. Until now.  It feels good to Letter!

So that's my week. How about yours? What are you thankful for? You should start your own list. You may be amazed at just how many blessings you have been given. If you do start, I'd love to share in your thanksgiving; let me know in the comments!

Year of Specialists

I am fast beginning to realize that this is the year of appointments.

This week we have a Breathing Test for Abi. That should be interesting. I'm curious as to what will show up and what the specialist will suggest or say about her lung function.

We have her ENT appt booked for May. Yay! She has struggled a lot this winter with her tonsils and asthma and so I am happy to have this addressed. Especially when every doctor we saw (her own, plus two at the medical clinic) mentioned how Huge her tonsils were, so much so that our own doctor said that they were "almost kissing"! That can't be right!

We are finally seeing a new pediatrician for Rhys! I am so excited about that! We have actually seen this doctor before, when Bryn was a baby and struggling with reflux. This doctor also, incidentally, was the one on call when I brought Rhys into the ER at one month old and very very sick, and he's the one who did all sorts of tests on him (including spinal tap) to determine why he was having apnea spells. That was a scary visit! But this upcoming visit next month will be better! I'm looking forward to seeing a new doctor and hopefully getting something sorted out for Rhys. I hate having this Mommy Gut tell me something isn't "right" with my boy, but also having him "well enough" that I need to explain and justify myself.

For Kai, we got confirmation for his annual cardiology appointments in August, which is nice. I hate having to call BCCH to get our appointments booked. It is such a hassel and the receptionist never calls you back!  The doctor also has his 24-Hr Holter Monitor booked, as well as an exercise test, which shall be interesting.

Of course, we also have our usual dental visits (I'm not looking forward to an upcoming one) and an annual eye appointment next month as well. But those are normal.  Hopefully our "un normal" ones will give us good answers though. And for that I have hope and slight anticipation!

thankful thursday

Welcome back to Thankful Thursday, a feature started by Louise at Talk Nerdy to Me, where we look back over our week to remember our blessings.  It is so good to see the good things that have happened, especially if you have had a particularly tough week. Being grateful is good for the soul. Here are just a few things that I am thankful for...

1. this girl

I am so thankful for Abi; for all that she is to our family. She babysits for us when Hunny and I need to go out somewhere (like our parent-teacher interviews at the schools, or for grocery shopping, or even just a quick step out for a coffee and a breather), even when she sometimes finds it frustrating. (we do pay her often. Sometimes in small gifts of a latte, and sometimes in cash, or in paying for new books for her to read, like we did this week!)

 
I am also so very thankful for her creativity and resourcefulness. When I was out at my dental appt recently, and Hunny was working late, she saw to dinner plans and made something for everyone. It was so good of her and I was so blessed by her thoughtfulness and her ability to fill a need. I don't know how I ended up with a girl like her! 

2. this silly girl

The Fiesty One decided to cut her own hair one morning while I was still in bed.  I know that a lot of kids do this; I certainly did as a kid, and even into my teens! But it still made me nervous to see her own handiwork!

I was thankful that it didn't really look too bad! I felt mixed on whether I should commend her on her abilities or tell her how it was a bad idea!

3. A friend of ours had her story published! 

A friend wrote a story for a grade five class project two years ago, and her teacher suggested she publish it, so her mom loked into it this year! A small company accepted it and the book came out just recently! It's so exciting! I see many years ahead of her developing her writing skills and growing her talent; she is already a great storyteller!  

Check out more information on this story, and how you can get your own copy!  We should support young talent, and local talent!  the lotus princess

4. a shameless promotion

 I don't join these things to gain followers, but I thought it was neat that Pinterest was using one of my boards in their "you may want to check this out" email this week! *patting myself on the back for being awesome*  It was neat to think that Pinterest wanted to promote me and my silly board on building projects! It made me feel pretty good! I'm thankful for small and un-important things like this that make me feel happy.

5. Jamberry party

For Abi's birthday party, she wanted to have friends over for a sleepover, but also do something fun, so we invited a woman over for a Jamberry party. I had heard about Jamberry this year, but had never had a chance to try it out myself, or to go to a party, so when we saw someone at a craft fair promoting their own business, we thought we'd try it out!

I'm a nail biter...I know, I know. It's a terrible habit. I really thought I would be over it by the time I hit my 30's, but by then the habit was set strong, and habits are hard to break.  I had heard that having a manicure would help, but since I don't have the money or time (or interest, really) to have one, I had heard that having pretty nail decor would help too.

My nails looked good!  My cousin's wife said that it helped her out, but if she had a snag or it bubbled up or frayed, she would pick at it, and I found out that to be true for me as well! Sadly, they did not make it a week! But I am going to try it again (after all, I did buy a few sets!) and hopefully I will be stronger this time!

I thought it was cute that even Eden was included! Our nail instructor, Kelly, applied Eden's nails for her, which I thought was very nice, considering I wasn't expecting her too. (you never know how some people will respond to a toddler, you know, when it involves their business, but Kelly was so wonderful!) She loved them!  *

6. Christmas music

I pulled out my Christmas cds the last week of November! I have a small collection that I listen to often, and I would say that my absolute favourites are the ones by Michael W. Smith. He has three...no, wait, I think he just came out with a new one, a Christmas with Friends one where he duets with others.  I love his Christmas music, they really do touch my heart. I love that he adds a symphony orchestra and many choirs. Oh, my heart is so happy and at peace when I listen to it. 

I was so happy to find his cds on youtube, so I've been listening on our tablet to the mix' while I prepare dinner. It really has helped with my peace!

All is Well (the song in the picture above) is a song off of his first Christmas cd, way back in 1989! It is actually sung by the American Boy Choir, and wow, it is so touching. Especially if you listen to Frank Peretti read his story of the same title. *tears* (I think you can listen to the story here. I'm not too sure since my computer isn't running very well right now, so I can't test it.)

7. custom card order 

I don't know if you are aware of this, but I love making cards and I really love making cards for other people. So I was pretty excited to have a custom order of 20 thank you cards to make for a friend!

8. Medication!

My thyroid is kind of ...off...this week. I have been in a lot of all-over body pain, having heart palpitations, feeling so so so cold, dealing with insomnia as well as fatigue, and been angry and frustrated yet also apathetic and depressed. It's been a really rough week!  So I was so thankful that my doctor called in my prescription to the pharmacy for me when mine ran out and I struggled.  

I may not always feel like my doctor is doing enough for my thyroid care, but I am sure thankful to have something to take that helps just a bit! Hopefully this will let me feel more..normal...again.

9. Snow!!!

The first snowfall of the season is always exciting!  Usually when it snows in other parts of the Lower Mainland, it won't fall at our house since we live at the bottom of two or three big hills, so I was quite surprised, and very happy, to see how much we received in the end! And ours lasted longer than my parents' house in Chilliwack!

The kids were going to go play in it, but that lasted hardly even 10 minutes. It was just too cold! We still have this arctic chill going on! Brr!

10. Swim lessons

We finished up our swimming lessons. The Youngers had a blast! They loved learning to swim, and they loved their teachers, and they were proud of themselves for what they accomplished; they started out timid and gained new skills. They didn't pass their levels, but that's okay. They learned so much and are able to now get their faces/heads wet, and that's a big step from when we started!

They keep asking about swimming, so I definitely see us repeating this in the Spring!


So that's my week in a nutshell!  There is so much to be thankful for!  What are you thankful for? If you start a list, let me know. I'd love to share your happy news too!



* I was curious as to how long Eden would keep her nails on, just to find that she had pulled them off in bed that very night! haha.  Of course, she wanted new ones on the next day!

Thankful Thursday

Welcome back to Thankful Thursday, a feature started by Louise at Talk Nerdy to Me, where we look back over our week to remember our blessings.  It is so good to see the good things that have happened, especially if you have had a particularly tough week. Being grateful is good for the soul. Here are just a few things that I am thankful for.. 

1.  Those who serve

I need to start off on a serious note, since it is so heavy on our minds, and on my heart.  I am so thankful for our soldiers, who serve overseas, who serve in our own country, who give themselves to keep each one of us safe. 

I am so heavy-hearted for Nathan Cirillo's family as they have to bury their son, brother, father, nephew, as he died while serving. It was supposed to be a relatively "easy job", standing guard and watching over the Tomb of the Unknown Solider, but that is where he was shot and killed, and the irony aches. Who kills someone at a National War Memorial? I mean, it's to memoralize those who have been killed in war. It's a place that is trying to show peace during heartache.

Thank you to all who do their job to keep the peace, but to those who also have to use force to protect us (like Kevin Vickers did). Thank you to those who dedicate themselves to keep us safe. Thank you to those who, with fear and pride, lend us your children, your spouses, your family, to stand for our country. Whether it be as a soldier, or law enforcement, or emergency responders, or intervention programs....thank you for being brave and standing up for the people.

 Everything after this may seem frivolous or too light-hearted, but I think that we can be thankful for the big and little things in our lives. It all matters.

2. Sleep-in Fridays

I am thankful in more ways than one for this! Our school (along with a few others) implemented a Late Start Friday to cut down on the Pro-D days they have. This gives the teachers time each Friday to prepare for what they need for an extra half an hour, and it gives some of us parents a chance to not have to rush. I like it! I set my alarm for 7:30 instead of 7am and it is nice! I am very thankful for that extra chance to sleep! 

3. Brunch Date

This week, I met up with friends who I haven't hung out with in a long time. We were all best friends in high school, but a move across the country, children, school, jobs, a move back home, family and every day distractions is what kept us from seeing eachother. I am so happy that we finally planned a date to rectify that!

I am also thankful that my friend picked up my bill as an early birthday gift! I wasn't expecting that! 


4. dessert

Abi has now started her Cooking class in Explorations (not that she needs a lot of instruction), so she had to make us Apple Puff Pancake one evening for dessert. It was really good, too! It's like a thick pancake, or an apple pie, maybe a little like yorkshire pudding...it's hard to explain! (you can find the recipe here)

5. pumpkin patch invite

Bryn was invited out to the local pumpkin patch with his neighbour friend, Josh, and got to take home a nice-sized one. I thought that was so nice!

6. free paint!

I was in need of supplies for a few projects I am tackling right now, so I posted on FB asking if anyone had any paint they were willing to pass along. I was so thankful and happy that I ended up with eight 3-4L cans (some more full than others) from friends this week! All for free and all useable! Hooray! And all great colours! (people like to be able to get rid of things sometimes. Especially paint since it has to be taken down to a recycling depot for disposal, and that isn't always the place you go to on a regular basis!)


7.  Books

We head out to the library every few weeks and come home with a big stack of books to keep us busy; I was so delighted in one particular one. Hugless Douglas and the Big Sleep by David Melling. I loved the story and the illustrations were awesome. We laughed so hard that we cried! Seriously! A herd of sheep are stuck to his back!!! And he sneezes the sheep out of the rabbit warren!!! HAHAHA.  Hugless Douglas is my new favourite kids' series!

 




8. mild sleep apnea

I got a call from the Respiratory Therapist with the results to my sleep test. (remember my lovely headgear that I got to wear to bed for two nights?)  Apparently, I have "mild sleep apnea". I'm not too sure what that all entails (because I never think of these types of questions when I'm talking to them at the time), but it looks like it doesn't effect me much. Which means that I don't need to wear attractive headgear to bed on a daily basis! Hooray! I am so thankful for that! He said that if symptoms get stronger (snoring and sleeplessness and fatigue) I should get another test done in 6 months.

9. testing siblings

I was so impressed and proud of my kids when I came home one night and found homework sheets on the table. 

Bryn has a test on his Mapping Unit on Monday, and he is a bit nervous as he's never had a "serious" test where he was told by his teacher to practice at home. (not to be confused with the weekly spelling or Bible memory tests he does that do not make him attempt to practice at home, haha) Abi said that she would help him out, so she actually went and printed up some sheets. There was the map of Canada he had to fill out, and graphs, and sample questions to answer! It looked so great! I was impressed with how much work she put into it (not so much with how silly B took it, though, from the sounds of it!)  She has a natural teacher's heart, and it is so wonderful to see!

10. A Stress Day Off

I am not thankful for stress... stress is a sign that I am taking on too much and not letting enough go and trying to do it all. It is not something that God intends me to have. Yet I still find myself bogged down with anxiety and stress sometimes. So I am thankful for the days that I cancel things easily and just rest a bit.


What are some things you are thankful for this week? Have you thought of starting your own list? If you do, share it with me, I'd love to hear about it. After all, "a thankful heart is a happy heart". (a bit of wisdom I learned from Veggie Tales and Mdme Blueberry!)

Lovely headgear

When I went to see my doctor the other week for my typical complaint of fatigue, she asked about my sleeping habits. She wanted to know how many hours I slept and if I snored and if I needed naps in the day. Stuff I've all mentioned before. I typically will get 3-4 hours of sleep in a row, before I am wakened to go to the bathroom or a child calls for me. (it's a lot less than I originally thought, but when I started to think about it, that's about the truth of it. Maybe not every night, thankfully, but for the most part. Then if you add in that I can't fall asleep at night, am a night owl, but still have to get up at 7am to get the kids off to school...I am one tired mama!) So yes, I have needed naps mid-day before. (I am so pleased that so far, since school started up again, I have been doing okay and not found myself dragging off to the couch or nodding off in the school parking lot at the end of the school day!) As for snoring...I've been told that I snore, but not very often.  To be honest, that doesn't even bother me at all. I figure that if I was snoring, it meant that I was sleeping! So I'm not embarrassed!

My doctor wants to rule out sleep apnea, which is a good thing, I guess. I'm not convinced that I have it. (although I am nervous to find out!) I rather think that my fatigue is linked to autoimmune disease, since I seem to have a few links.

To find out if I do have sleep apnea, which is not the ceasing of breathing like I thought, but rather an obstruction of proper breathing. (typically the tongue falls back into the throat, collapsing the esophagus...I saw a neat little video with a Respiratory Therapist!) I had to wear this funky headgear for two nights. It captured my sleep patterns and body and my REM sleep depth and whatnot. I'm not too sure how, but somehow it was able to record it.

It was lovely to wear. I look amazing!

I'm glad that I was able to do this testing while my Hunny was gone on his hunting trip. I couldn't see this sitting well with bedtime snuggles and such!

When you go to bed, you turn on the recorder and it instructs you to lie flat on your back and look at the ceiling while it initializes itself. After a minute, the polite female voice says that it is set up and you can go to sleep now.  If only falling asleep were that easy for me! I wish! (It is for my husband!) You also have to wear this nose prong. It didn't provide any oxygen or anything, but maybe it measured what I was putting out? I don't know. Things didn't go too bad, I did manage to sleep for about 3 or 4 hours until a beeping noise woke me up and a voice prompted me to "please adjust the headcorder, please adjust the headcorder, please adjust..." argh! I pushed on those forehead prongs (there are three stickies that attach to your skin) until the voice stopped. The first night, it happened at 3:30am, the next night at 4:30am. Slightly frustrating! (another reason I am happy I did this while Hunny was away! He would be a grumpy bear if he was woken up two nights in a row to that!)

The results take a few days, so we will see what happens. I am hoping I don't have sleep apnea (I don't think I do); the face mask you have to wear to help you breathe at night looks so uncomfortable! I move around a lot in my sleep; I can't see that going over very well. But I will tackle that hurdle if I ever come to it.

How to help a sick friend without putting an effort out.

  This week, I caught a nasty cold that stuffed my sinus', ached my muscles and gave me migraines, and even though I was handling things okay for the most part, I felt bad for my kids. I couldn't do anything for them and we couldn't go out and it was basically just a weekend of tv watching instead of fun trips like I had planned. Boo!  The Olders could entertain themselves by playing with neighbours, but the Youngers still need someone to watch over them (being only 3 and a delayed-6)  I had posted on FB on Saturday asking if someone wanted to take them since they were so restless, but I was prepared to deal with them myself.("Sure, you can watch fifteen more episodes of Dora and Diego!")

It's been said that you find out who your "true friends" are when you ask for help during a sickness, and it's true. Partially.  My parents and mother-in-law wanted to help, but they were also just recovering from colds and didn't want to expose themselves to more sickness. (I was sick, as was Abi. The others were coughing and sneezing with allergies, but didn't get it like we did. Thankfully)

And I get that. I really do.

I did find out who my "true friends" were and it was a nice surprise. My neighbour, Jenny, offered to pick up stuff for me (like groceries or even just chocolate to keep me going!) and sent over some cold medication for me, which was so wonderful. We were close a few years ago, but then our kids hit a stage where they were hanging out with only their friends and it seemed as though they faught every time they were together, so we didn't see much of eachother either. But I am happy to say that things have settled and has been good again and I am so happy! My friend, Rebecca, also offered to pick up groceries or do anything else I needed, and even called to see if she could take the Youngers for me. (it ended up being at dinnertime and I had things sorted out, so it was too late, but she took the time to call and ask and it was genuine, instead of just pretending to call all the while knowing it was probably too late!)

As for my "other friends"...

I do not begrudge any of them for not responding. And maybe I am just too forgiving (if there is such a thing), but seriously...I understand Life and how it gets in the way of doing things for others sometimes. I know how sometimes you can't seem to figure out how you can help out when you already have so much on your plate. Suddenly your day goes by so fast and you realize you didn't get to do all on your own list; how could you possibly add someone else' tasks? 

I understand not wanting to come into a germy house and face the chance of infection. Especially if you have young children at home still.  I get the idea of not feeling comfortable taking on childcare too, if you don't know the children very well, or if it's not your gift. I know how you can feel unsure about even how to help.

These are legitimate worries and concerns. They can also be excuses. Are they real reasons or are you avoiding offering help? Sometimes I have to ask myself that honestly too.


I offer you a guilt-free list of ways to help friends who are sick and you just don't know what to do, or just can't help out since your own To Do List is too long, or you want to put a minimum effort but still make it look good:

1. call them to let them know you are thinking of them. tell them you will pray for them. (*this may not always work. praying doesn't get the kids' dinners made, but depending on the friend, it may make them feel better knowing that you do care about their illness.)

2. give flowers. pick them from the side of the road, or a neighbour's yard, or buy them, it doesn't matter. Flowers always look pretty and are a good pick-me-up. send them through someone else if you aren't able to drop them off.

3. drop off a dinner. even if it is something bought like McDonald's (kids love McD!), or oven-pizza, or those handy roast chickens from the grocery store already cooked. But maybe you don't find it difficult to make up an extra helping or two of dinner while you are making up your own, how wonderful!

4. send a get well card (even one from the dollar store will do...even if you think they may be better by the time it arrives). or email one. or even post on their FB a get well message. It doesn't take a lot of effort.

5. drop off a gift. nothing expensive. chocolate. small toy to keep kids occupied. even a movie of your own for them to watch (include popcorn!) or a book. or bubble bath. (baths are cozy when you are sick)

6. offer to pick up their laundry and wash it at your own home if you don't want to go inside their home. If you aren't worried, do their laundry for them while you visit! (feel free to clean up their laundry room too, and organize it!)

7. offer to clean for them. Maybe not deep clean (but wouldn't that be an extra blessing?) but everyone talks about having to clean the house during a sickness, and oddly enough, sick people don't seem to find the energy to do that, so maybe you could? (you could even offer to do this as they are starting to recover, then there is a chance that they will help you out and so you don't have to work as hard!)

8. send over a get-well pack: tissues, Halls or Ricola, hot water pack, chicken noodle soup, Neo Citron (love that stuff), vaporub... you get the idea. If you don't want to do all of it, or can't afford it, then even one is a sweet gesture.

9. offer to pick up/drop off any healthy children to and from school.  Sick people don't like to leave their house, and school is usually outside of the home and requires driving. Sick people shouldn't drive. Sick people like to sleep instead. This would be such a great thing to do!

10. check in after a few days of their sickness and see how they are faring. Maybe they are better and you can rest easy in not having to do anything at all! But calling (because it is nicer than texting, c'mon!) will definitely lift someone's spirits!



Most of these items don't take a lot of time or effort, and most of them don't even require you to enter a germy sick home (you can leave things at the door), but all of them tell your friend that you care and want to help them out! Sick people appreciate that!

If you ask a friend how you can help, to be honest, most will say that they are okay or answer "nothing", but we all know what it's like to be sick! And we can all think of ways that we'd like to relieved when we're sick! We just need to start applying these when our friends come down with colds and flus. 

Be a blessing!  Be intentional!



**to my "other friends"...I really do get it. But next time, you have no excuse!  ...and now neither do I! So we'll both have to try harder and put this into practice!

Genetics

We made it to Rhys' Genetics appointment. Yep, our time has finally come!  I was so happy that Hunny took an extra day off of work to attend as well, since I was a bundle of nerves. (even though I knew I didn't have to be) And I am grateful for two sisters who stepped in to watch the kids for us so we didn't need to drag them along to the Specialist as well. (that would've upped my stress level. Having the pressure to keep kids still and quiet at appointments is a tough one.)  We weren't too sure how long everything would take, but we had to predict that it would be, at the very least, a three hour day. One hour to drive in to BC Children's Hospital, one hour for the appointment and then one hour to drive home. Of course, there was the thought of the appointment not being on time (our cardiology appointments never are at BCCH!) and then time spent at the Lab if we have tests to do, and then would we hit rush hour traffic? Somehow, your whole day is spent just for one simple appointment!

We weren't too sure what to expect, so I brought along my "Rhys Binder". It contains paperwork from his visits with Infant Development Program (now called Sources), as well as his Speech Therapy notes, and all of his ASQs and Gessell Developmental Assessments (I was so relieved when I finally found his last one, done at 39 months old, just before he was dismissed from the IDP...that is, three years and three months, for those who, like me, don't understand when people use months after a year old!) as well as the medical notes from when he was at BCCH and Genetics at a month old, and the photocopy of the questionnaire
form they wanted me to fill out for this new appointment.  I am trying hard to be thorough, and organized so I can be a better advocate for him.

 Our appointment was rather unexciting!  The doctor was good. I liked him. He has a trustworthy demeanor, and was patient, quiet and slow; he didn't rush anything. (although, at first, I was wishing he'd move along and get to the heart of our visit!)  He started out with reminding us that genetics and science can only explain so much.  He said how a diagnosis would only give us something to fill in the blanks  ("he has ___") and to give a label for the schools to deal with. He mentioned that we shouldn't put a "ceiling" on R (or any child, for that matter) and that teaching, training, encouragement and patience would get good results, no matter the diagnosis.   

We nodded and agreed, and explained that we just wanted to know if there was a reason for his delayment. The doctor suggested that we get an assessment done at Sunny Hill (which deals with rehabilitation for children with disabilities, delayments and autism)....we were supposed to be on the wait list, but we haven't heard anything in a while.  
 

The doctor was the Clinical Professor of Genetics, and the woman who was with him taking notes who I thought was his assistant was actually the Genetics Counselor.  While Rhys coloured pictures, they studied him, and then the doctor measured him (his hand length, finger length, distance between eyes/pupils, length of forehead, size of ears, size of head...) and tested his flexibility (in arms and hands: how far could he hyper extend them), listened to his heart and lungs, checked over his legs and reflexes, and chest and placement of his nipples, and his back and spine, even peeked down his pants at his bottom and front, and checked his feet. I *think* everything sounded okay with the exam, but maybe there were some comments on his feet??? I'm not too sure!

The doctor sat quietly a lot and I wasn't too sure what to say or offer when there was a silence. Was he waiting for us to talk? Or was he using the time to study Rhys quietly? Or pondering different solutions? The Genetics Counselor talked even less! In fact, I wasn't even aware that's who she was until we were home and I looked at her business card!  I found that the difficult part of the appointment. Should we have said more?

He did say that there was a test that he could run, as well as two other tests that hadn't been done before the could be done as well. (Chromosomal Microarray, Sterol Pattern and Plasma Amino Acids...whatever they mean) The results take 8 weeks and they'll call us when they're in.  We weren't able to do his lab tests at the hospital though, since they are fasting ones...and Rhys was eating fishy crackers as we waited! Oops. So I'll have to take him to the local lab for the blood test, which I am not looking forward to. They are good there, and gentle, but it will take a few of them to help with it as R kicks and cries. As awesome as they are at BCCH with drawing blood (since they are used to dealing with young patients), I am not taking an hour drive to see them just for a test. 

 Doctor Boerkoel did say that since R hasn't lost any skills, but is gaining them, (albeit slowly), that he only has mild symptoms, and that is a good thing. He did mention how R has "soft features" and is "elfish". (which is what we've heard from his pediatrician too. ...I think he's just plain cute!)  But nothing that is glaringly obvious.  I mentioned his areas of weakness (gross motor, speech, and some behavioral immaturity) and the tests for Williams Syndrome and for Fragile X , but he said his features weren't "hard" like they are with those. Both of those have tough and hard physical features....the long face, or full lips, or upturned nose.... I have always thought of Rhys as being "delicate looking", and admit that the one factor in making me second guess WS or FXS was that he didn't have it so obvious in looks. My husband did see the words Noonan Syndrome written in the file, but I had crossed that off my list because of the same thought: R didn't fit those obvious physical features. But who knows? I don't know what the note said. Maybe it was crossed off for them as well?

So that is it.  We didn't go over family history or the questionnaire, and I didn't have any questions for them and they didn't look at my binder! We left with blood test forms and no clear idea where we were headed with everything. We aren't anywhere ahead of where we were before, but it was nice to have a specialist not see anything "obvious" in Rhys, and it was good to have him tell us that whatever we discover, he only has a "mild case".  But it still is difficult to leave without any solid idea of what to do. I really wasn't expecting to have all these answers, but I guess deep down I had hoped we'd have something. But instead we are left with just waiting again.

Next step is to see where we are at with the waiting list for an assessment at Sunny Hill, get those tests done, and just wait.

Thankful Thursday: Fatigue Edition

When I saw this feature on Talk Nerdy To Me, I knew I wanted to start it as well. I figured I could use some more focus on things I'm thankful for. I had read One Thousand Gifts (I totally recommend this book!) and Ann Voskamp's blog and had been trying to change my thinking and to seek the blessings given every day. And I have become more grateful and noticed more of a peace in that, but I still needed something more. Thankful Thursday gives me that challenge.

It started out as a simple list of a few things that made me happy; things that I could be thankful for. But over the two months, I now find myself actively searching; I like looking through each day for gifts. My lists may still seem simple, but that's the wonder of blessings -- sometimes the simple small ones have great impact, if we are willing to see them.

This week has been a bit hard on me as I have been battling extreme fatigue. I'm not too sure if it's from my hypothyroidism, my MVP or an undiagnosed condition, or just too many late nights with not enough sleep and too much heat. But this fatigue is crushing me and it does more than just make me feel tired. It causes me to struggle with breathing, resulting in me panting. It makes my body ache. I lose ability to concentrate or focus on anything. My mouth goes dry and I feel void of emotions. I become unable to cope with anything. Sometimes I feel anxious. And that is just a short list.

As I lay in bed, with my mind still actively running, but my body feeling rather weighted, I thought of how, despite my mobilites and my weakness, I have much to be thankful for.

So here is my Thankful Thursday: Fatigue Edition. (It's going to be a wordy one!)

1. Fatigue is a sign

When my body starts to feel fatigued, it tells me that my body is weak and needs to rest. I am thankful that I have this to remind me to take care of myself. (as opposed to working too hard and ignoring my own body, or not knowing what it means)

2. Helpful children

I have had a few incidents with ailments in front of my kids, and while that is embarrassing to have them see their mom weak, I am also thankful that they understand that I have limits. It teaches them empathy. I am thankful that they show concern for me and are willing to help me. (well the Olders notice, the Youngers don't yet.  It was nice to have Kai ask how he could help me this week, when I lay on the couch panting. He offered to get me something to drink and eat!)

3. Strength Within

I am thankful that despite fatigue, I have been given strength when I needed it and that He is still able to work through me.
^"...Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." 2 Corinthians 12: 8-10


4. Creativity

On the times that I have laid on the couch, trying to rest and control my breathing, I have still been able to use my gifts. I can still text friends, I can still write cards, I can still work on planning events. It takes a bit longer (since concentrating is a struggle) but it can be done, and I am thankful that even when my body wants to drop, I can still be useful.

5. Empathy

I am thankful my Hunny understands my fatigue (or is starting to) I am thankful that he doesn't demand that I get up and attempt to do things, but will help with tasks. (like dinner or putting kids to bed)

I am also thankful that my Mom struggles with fatigue due to her own autoimmune diseases --- ok, I'm not really thankful that she struggles also, but thankful because she understands what I am going through. She can give advice and encouragement and offer prayers. It is good to have someone who understands because they are dealing with it also.  Although I wish neither of us were in this Fatigue Club anyways.

6. Conquering Fear

If have been dealing with fatigue for some time now, and I am starting to recognize symptoms before I get a full-blown attack. I am thankful that time does educate and that I can see connections better so that I am not overwhelmed with anxiety or fear when I feel like collapsing. I don't find myself worrying over possible scenarios or getting myself worked up over imaginary symptoms (mostly) I know that my body is just fatigued. I need to rest and I will get better. I do not need to worry. (even if it means that sometimes I need to remind myself those words!)

7. Not defining

I am thankful that I know this does not define who I am. I am a loving mom, a creative being, a loyal and caring friend. I have many talents and interests that God created in me that makes me who I am. My fatigue is a reaction to health issues that I carry, but it is not who I am. It may beat me up, and try to bring me down, and try to whisper thoughts into my head, but in the end, I am so much more than this.  I know that. And so do others who know and love me.

8. It doesn't last

I have been fighting this fatigue for over a week now and I have often like I've had enough and can't go on, but somehow I manage. I know that even when it drags out and I feel close to the end of my endurance, it will not last forever. My body fights it and I somehow find the strength and I eventually get the rest I need. I am thankful that I can look forward to getting up one day and not feeling this weight upon my body.

9.  All things

One of my favourite verses is Romans 8:28 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose.."  All Things. Those two words are the ones I cling too. It means that everything that happens, every moment, every struggle, every overwhelming and weak day, every joy and triumph...in all things, God is working it out for the good. I don't see a purpose in having to live with this struggle, but I don't have to to believe that there is something good to come out of it.