Wednesday, December 30, 2009
A bad pain.
One of those "I just wanna go lay down for a week or two" kind of pains... But laying down hurts, sitting hurts, standing hurts... I can't get comfortable... The best I've felt in the last week was last night with an ice pack on my neck for 4 hours, and the times I've been so high on pain killers that I couldn't function.
Christmas was stressful. Lots of travelling, lots of indecision, and lots of food.
Everybody loved their hats! Yay me! (I've had requests for 5 more hats, and a scarf) I should have pictures in the next couple of days.
I did manage to finish my brother's sweater... But the hood came out HUGE, and it looks like a monk's hood... But my brother loves it, so I'm happy.
So, pain... Ribs are doing better, neck is nearly unbearable, I need to keep my head tilted slightly to the left... Hands are functional-ish, painful, dislocating, the usual. Umm... Ankle is still not healing, and my brace is causing my foot to dislocate at odd times.
I painted my finger nails with clear polish, and snowflake stickers, they're pretty!
What's new with you?
Thursday, December 10, 2009
Christmas presents: I've gotten about 2/3 through my list, and that includes all of the major ones... I've finished all of the pieces of my brother's sweater, I just have to sew it together now. And I think I may have added 5 more people, plus 2 gift exchange presents to my list of stuff to do. There's FOURTEEN DAYS UNTIL CHRISTMAS, AM I INSANE!?!?!?!?
The weather is making me extraordinarily busy at work, as well as increasing my achy pains everywhere. It's getting quite difficult to have any kind of restful sleep. Last night I slept for 4 hours, and woke up with minimal pain (and minimal energy). The night before I slept for 8-9 hours, without moving, and woke up with numerous dislocations (lots of energy upon waking, which was quickly sapped away due to the pain). I have to find the sweet spot again, the one where I get enough sleep without waking up in pieces. It's a difficult balance.
Speaking of dislocations, my hands and ribs are getting worse, and my ankle is still struggling to remain intact inside my brace. I would really like to be able to wear my winter boots, but it's an either/or with the brace.
I've also been randomly depressed the last couple of weeks, I just feel like I need to cry, and I honestly can't find a reason for it.
Don't know if I'll be able to post again before Christmas with all the projects that need finishing... I haven't even made it to the chiropractor in over a month...
Tuesday, December 1, 2009
I can't remember his voice.
In other news...
I started crocheting my brother's sweater again... Twice... The first sweater I made was too small, so I switched to a bigger crochet hook, and went up a pattern size. That one turned out way too big for my brother... But it should fit my husband. Then I started another one with the bigger crochet hook, and the first pattern size I used. It looks like it should fit nicely.
I also made my gramma a poncho. It's charcoal colored chenille. It's so SOFT! And WARM!
And I made my sister's hat. It's purple, and pink, and FUZZY!
Oh, and I fell down on the weekend... My hubby smacked my ass, knocked me off balance, and I just crumpled to the floor. I wasn't wearing my ankle brace, so I re-stretched my still-not-healed tendons. That was fun...
Thursday, November 26, 2009
Not so happy death day Dad :(
Three years ago today my father passed away while on vacation. He went peacefully in his sleep. It was his father's birthday.
Since then I've lost so many people.
Today will be a day to reflect on life, and death, and family.
Tuesday, November 24, 2009
But yesterday was beyond words. On top of everything I'm about to tell you, yesterday felt like my body had Alzheimer's... My feet forgot how to walk, my hands forgot how to write, print and type, and my tongue forgot how to speak...
I finally finished my brother's sweater that I was making him for his birthday (originally) and that didn't work, so I thought I'd give it to him for Christmas... but... It's too small, and I have to start again (the way it's constructed is not conducive to alterations after the fact) . So yesterday... I went shopping for more yarn to add to my mountain and hill of yarn, that continue to grow in my living room. And as I was walking my ankle had one of those horrendous *CRUNCH* moments, and I almost screamed. Off I toddled to the nearest seat, tore off my shoe, gingerly removed my brace, poked around a bit, then gently (and with a lot of force) tied my brace back on tightly enough that my toes started losing feeling. Then I was on my way again.
Once I got home, I quickly put all of my things "away" (haphazardly threw them onto any available surface) then curled into the fetal position, and didn't move for 2 hours. After that I was on my way outside for a smoke and three steps toward the door had me almost in tears from the pain. I went back the three steps I had already taken, and grabbed my emergency medicine, so I could smoke some of that too. After my self medication I was finally able to concentrate on something other than the pain, and after a while I went to bed. You know what fish do, when they're out of water? Lots of flopping? That was me until 3am 'cuz I was still in too much pain to get comfortable enough to sleep (and my emergency pain medication usually knocks me out pretty well). Then I got up at 6am, and went to work... Grrr...
At work, writing, which I do a LOT of EVERY DAY... I bent my index finger knuckle really far the wrong direction. I need some ring splints... Lots of them. Soon. I still can't use my index finger, and my ring finger on the other hand seems to think sympathy pain is a good thing...
After work today I get to do the whole process again, because I couldn't find enough of the yarn I needed last night...
...Oh, and I broke my husband... I feel REALLY bad about it :(
Wednesday, November 11, 2009
Which is also the bad news, because I have nothing to post about.
Well... I could talk about the wonderful world of PROPRIOCEPTION. That would be fun, right?
So basic overview... Proprioception is the inner sense of where your various body parts are in relation to each other. When you're pulled over by police, and they do a field sobriety test, proprioception is what allows you to touch your nose with your eyes closed.
In people with Ehlers-Danlos syndrome, proprioception is permanently impaired to different degrees (presumably in relation to the severity of EDS). When a limb moves beyond the normal range of motion (eg: dislocation, subluxation, or increased flexibility) it is easy to lose a sense of where the limb is in relation to the body.
My proprioception seems to be getting worse, especially in relation to my hands, as my joints become more and more unstable. Last week I dislocated the same finger twice while stapling files at work. I have a hard time grasping my coffee cup: it feels like I'm going to drop it when I pick it up, so I have to pick it up with both hands a lot of the time. While typing, I've always had to look at the keyboard, but I have been making increasingly more typing (not spelling) errors lately, because I can't seem to feel if I've hit the key or not. --Just in that last sentence I had to retype the same word 5 times.-- I also have been having issues writing, because I can't seem to grip a pen or pencil tightly enough. I find cursive to be easier than printing when my hands are being mean.
I have always paid more attention to where I'm putting my feet than most people I know. I've gone for hikes (many years ago, when my joints still worked), and not noticed a single detail about the scenery until we got to our destination, because I've been looking at my feet the whole way. This makes getting lost significantly easier, because I've been paying attention only to what's below me.
I have more good news! My nephew that gave me swine flu is healthy again. He wasn't sick for very long, and it hit him like a normal flu. His mom didn't get sick... And both of them had their swine flu shots the day before my nephew started showing symptoms (so he already had it before he got the shot).
Tuesday, November 3, 2009
You hear that?
H1N1 IS NOT THAT BAD.
I've been sicker, for longer periods of time, with exceptionally less-talked-about illnesses.
Food poisoning at grade 5 camp? Way worse than this.
The flu I caught when I was 9? Way worse... Normal seasonal strain, fever of +105F.
This one differs from the rest in that there's more chest involvement. Like a bad chest cold with a side of flu.
I would advise (not medical advice, just personal experience advice) normal/healthy people to just suck it up and go without the flu shot. Unless you are in the high risk group, or are in contact with high risk people, or have pre-existing breathing issues (asthma/bronchitis etc.), I would say H1N1 is a lot less bad than the media would have you believe.
I Survived H1N1 2009!
For anyone out there keeping track, I caught it from my 10 month old nephew. He was the last little kid I visited that weekend, so I didn't pass it on to the other 2 kids, YAY ME! My nephew was just really snotty (like running out both nostrils faster than you could wipe it off) and he seems to be on the mend now. He had a fever and a cough, and the fever's down. His mom is pregnant (due in January) and she doesn't seem to be getting sick, so that's a good thing. She is in 2 high risk groups. She's pregnant, and she has chronic bronchitis, so think healthy thoughts in her direction!
Sunday, November 1, 2009
Friday, October 30, 2009
I will come back and post when I'm healthy-ish again.
Oooh... Is it irony? ... I come down with H1N1 the day after the vaccine clinic opens up... THREE BLOCKS AWAY FROM MY HOUSE...
Monday, October 26, 2009
Okay, Friday night was my best friend's birthday party, and we went out to karaoke. It was nice, I got to meet new people, and I got to sing. I sang Hands by Jewel, then I sang Angel by Sarah McLachlan, which made the karaoke host cry. After that my best friend and I had a friendly competition with The Cranberries' Zombie, she won... The prize was a drink from the karaoke host, but my friend's pregnant, so I got the drink, and we were also playing for the right to sing that song when we go out together, because we always fight over it. After that I sang Thank You by Dido, and the karaoke host teasingly sang the first couple of lines of Eminem's Stan. All in all it was a pretty fun night.
Saturday night was my guy friend's birthday. He's in the army. Last year he didn't get a real birthday party because he had to fly out to the base the next day. This year he was pretty sure he was getting time off on his birthday, but the day before they told him he couldn't leave. He apparently updated his event on facebook, but I didn't get the memo, and neither did the only other guy I knew that was going. The two of us stayed until the bar closed at 2:30. It was so much fun!
I got there at 9:30, because I had to drive over an hour to get there, and I wasn't sure if I'd be able to find the place, so I left early. When I got there, I ordered a drink, and sat down with a good view of the door. I was sitting near a group of already drunk people. One of them threw a paper plane at my face, and missed thankfully. As an apology, he bought me a drink, then invited me to his table (my party still wasn't there, and I'd been there for an hour at this point). Right after I sat down at their table, a round of shots was bought, and I was three drinks in, without knowing what was going on.
Finally my one friend got there, looked around, then dragged me over to the other bar in town (to look for the birthday boy), where I saw someone I haven't seen since high school, and she did one of those flying Superman hugs, and almost knocked me over, she was so excited to see me. Once we stopped jumping up and down hugging each other, and squealing like school girls, we talked for a few minutes, and she decided I was spending the night on her couch (which was a huge relief, as my ride flaked on me, she went to bed at 9:00, and I had already had too much to drink to allow myself to drive anywhere).
So me and guy friend went back to the first bar, and talked for hours, until the bar closed, and he had to drive his GF home. At the point that I had bought my fourth drink, I set it on the table, and a drunk guy almost knocked the table over when he walked past. My drink was airborne, and I managed to pull a wikkid awesome ninja move, and I caught the drink without spilling a single drop!
I walked back to bar number two, and waited for my gal friend to get off work, then we walked back to her house, and stayed up talking until 3:30 in the morning. I crashed on the couch, and woke up to a 4 year old staring at me.
He was soooo cute though, and eerily quiet... I didn't even hear him get out of bed. He's not one of those kids that cries when he wakes up, or has the insane urge to run in circles. He was perfectly content to just sit there until I woke up, then he proceeded to SHOW ME EVERYTHING. He showed me all of his toys, and all of his little brother's toys, and all of the movies that the toys came from... "This one's the bad guy, Randall, from Monster's inc." But he did this with EVERY toy, and then all of his stuffed bears, then "Do you want to see my HALLOWEEN costume?!?!?!?!? Come to my room!!!! I'll show you!!!!!!!" On and on it went, until finally little brother woke up, and went downstairs... Then we watched Scooby Doo.
Little brother came upstairs a while later in Dad's arms, and I was sent downstairs for more sleep. Upon waking up again, I was officially introduced to the 2 little guys, and I got hugs and kisses, and cuddles. The littlest man called me auntie, and it was so cute! He's really good at apologizing too... First he poked me and said "I sorry, I sorry, I sorry" then he kissed it better. He did the same when he sat on my foot, and then when he pulled on my necklace... That time I got a kiss on the boob. It was too cute. I also got random hugs and kisses. The first time was when somebody else was leaving... Hugs and kisses for everyone. Then I was standing beside the chair the little man was sitting in, and he hugged my leg and kissed it, then I got one more hug and kiss when I finally left.
You guys have no idea how tempting it was to just stay there... The kids were so cute, and the parents were almost too lovey with each other, but it was such a happy atmosphere.
After I left there, I went to birthday girl's in-law's for supper (I brought timbits for dessert) and they were nice enough to feed me, even though I was unexpected. I visited with them for about an hour, and got drooled on by my nephew.
I finally made it home at 10:00 last night, stayed up with hubby to watch a scary movie, then we went to bed.
With all of the walking I did between the two bars, I'm glad to say that my ankle didn't give me any trouble, I had the brace on the whole time. Oddly my shoulder has been feeling worse and worse since Friday afternoonish, and it's to the point now that I can barely even move it enough to type without wanting to scream.
I started this post pretty early his morning, and it is now 4:01 in the afternoon. I think that's enough for today.
Friday, October 23, 2009
Ummm... Yeah, no clue...
So to get on with this posting business, I'm going to talk about books. Vampire books.
My friend e-mailed me a new series Vampire Academy last Friday or so. I'm now about 20 pages from the end of book 4. I'm enjoying them immensely :) (Finished book 4 now. It ended with a cliffhanger... now I have to wait for book 5 to be written and published...grrr...)
Ever since I started reading vampire novels, I fell in love with them, and I have a theory as to why that is:
Vampires are virtually indestructible, they heal extraordinarily fast, and they're immortal. They also have superhuman strength and stamina.
It's so easy for me to get lost in these books, and live a life full of energy, exploits, and health, even though it's just in my head. I enjoy the escape they give me from my life, which is completely the opposite: I injure myself doing the most mundane tasks, I take months or years to heal what normal people heal in a few weeks, I get so fatigued, and weak feeling that I can't do simple tings like laundry or dishes. Sometimes I can't even hold a book to read.
So in short, yes, I am a vampire addict, but in a different way than a lot of people. It's not just the mystery, sex or intrigue, it's the feeling of freedom, a feeling I don't have in my real life... So I read.
Update: I clicked "post" and I remembered... I have a freaking nickel allergy, and it's driving me insane... I want to peel off all my skin just so it would stop itching... Stupid pants...
Tuesday, October 20, 2009
I'll be going to 2 different parties (so long as the birthday boy does not have H1N1). One will be relatively close to where I live (lady friend) and the other one will be close to where my lady friend lives (about an hour away) and I'll probably be spending a very drunken night on my lady friend's couch :)
On a completely unrelated matter, I woke up on Friday morning, stumbled to the fridge for a glass of milk, and found a pair of jeans ... in my fridge. It was the weirdest thing that's happened to me in recent memory, and I found myself laughing about it all day.
It turns out my friend (who had spent the night at my house) had gone for groceries before coming over, and as a reminder to herself she put her jeans in the fridge so she wouldn't forget her groceries when she left in the morning (she obviously wasn't leaving without her pants). It was brilliant, but it was strange...
Updates... I still haven't touched my brother's sweater again, but I have finished my niece's blanket, as well as a matching hat, and I have started on another hat for the birthday boy, and I'll still have to make the birthday girl's hat after I'm done.
Weird coincidences... After 2 years of living in the same place, I fell down our stairs, then my hubby fell down our stairs the same week... On the weekend my pretty lady friend that spent the night fell down NOT our stairs... but still, in like 1 month 3 people fall down the stairs... It's ridiculous!
On another note, I've been having a lot of left hand joint issues, a lot of dislocating the left floaty (bottom) rib issues, and my ankle feels entirely unstable with the brace off, and I've been in so much pain recently(with and without the brace), I keep thinking it wouldn't hurt so much if I cut it off... with a plastic spoon... over the course of a week...
And I still have this stupid cold...
But it's been rainy here the last couple of days, and aside from the bitter cold that comes with it, the rain does make me smile... :)
Sunday, October 11, 2009
I've been off work all week, taking some much needed vacation time, even though I spent it all at home, and Hubby came home from work this week with a cold. He gave it to a co-worker, and between the two of them I've got it now. It feels like my head is going to explode.
On my first day off, I did 3 loads of laundry, and I did the dishes, and I cleaned some of the kitchen. On my third day off I made quiche. It was really good! A double recipe lasted that night, and until lunch the next day... So I made it again Thursday!
I've been working on my brother's sweater... It's driving me crazy... I don't think I'll make another sweater again, unless it's bigger yarn, or a looser stitch... It hurts my hands if I work on it for more than 5 minutes. So I took a break from sweater making, and started on my youngest niece's star-shaped afghan last night. I used an entire ball of yarn (one of the bigger ones) before I went to bed.
One day (possibly even yesterday) the toilet overflowed... So I got to clean the bathroom, and I figured I'd clean the rest of the kitchen while I was at it. (Hooray for vacations!)
And I finally saw my chiropractor last Sunday. After a month of not seeing him, and falling down the stairs, he had to do quite a bit... My right leg was an inch and a half shorter than my left from favoring my left ankle.
Speaking of my left ankle, instead of being a complex arrangement of bones, tendons and ligaments, it feels like someone put in a bag of marbles and a large wad of chewing gum.
Aside from all of that I've also not been sleeping very well, and it is currently 2:09 AM, so I'm sorry if my post is scattered.
Friday, September 25, 2009
Anyway, I've been wearing this ankle brace for most of my waking hours since I bought it. It fits mostly okay, and it reduces the movement I have in my ankle. However, it goes from about the middle of my foot to about 1/4 of the way up my calf, and in so doing, it does not restrict enough of the movement in my ankle, and it does absolutely nothing beneficial for the looseness of the bones in my foot.
After that little episode, I've been extra careful how long I stand with any weight on that foot with my brace on, and I actually managed to do all my dishes without dislocating anything!
Another wonderful thing about my ankle brace, is the hole they have for my heel to poke through... It's just big enough to be troublesome. It seems to direct my heel to the outside, without doing anything to the rest of my foot. I find that especially when I'm sitting with my feet flat on the floor, it feels like my ankle wants to fold in on itself, starting with the heel.
I also managed a highly improbable sublux while wearing my brace, in the exact spot where it REALLYFREAKINGHURTS, because I was taking off my shoes. Once the shoes were off, and I'd wiped my tears on my sleeve, I tightened my brace, and that helped for an hour or so.
Still really considering the whole cast option, as I still have problems sleeping without moving...
On another note, I had an itch between my shoulder blades yesterday, and I reached to scratch it with my left hand... (Stupid!!!) and I subluxed my shoulder in a way that caused my entire arm to go numb, tingling, and very weak for a few hours. You'd think I'd know by now NOT to use my left arm for reaching... But you'd be wrong, even geniuses have blonde moments...
Monday, September 21, 2009
At my follow up appointment with an ortho surgeon on Thursday they booked me in for 9:30am. I got there, and I signed in... waited... waited... finished the book I was reading... waited some more, they brought me into the little "room" followed by more waiting...
Out comes this nice little lady, after looking at my x-rays from emergency, and she has a posse of 2 additional doctor-type people. She's stage whispering "You guys should talk to that lady right there," she points at me, "she's interesting."
Having someone call you interesting in normal social situations is perfectly acceptable. It's nice when people think you're interesting. But in a hospital, when someone says 'interesting' they mean 'Medically Interesting' which means a lot of ogling and a LOT more poking, prodding, twisting, pulling, stretching, and PAIN.
So the nice lady comes over, and she says "You have Ehlers-Danlos Syndrome? Hypermobility type?" I say "Yes, you've heard of it?" to which she replies, "I've seen several people with EDS."
At this point I'm sure there is a look of utter shock on my face.
Then commences the poking, prodding, pulling, twisting, man-handling, stretching, and other various torture. When all of this is finished, the nice lady calls over her 2 partners in crime, and says to me "Don't tell them you have EDS." Once the guys get over there she promptly tells them "It's NOT in her head... It's all in her collagen" (with a conspiratorial wink to me). Then she leaves them to torture me some more.
The first guy goes through the whole process again, asks me about previous injuries, laughs at me a little (in a concerned, and caring way). Then says "You have Marfan Syndrome." To which I reply, "Nope, that's my husband, try again." I figure the guy gets some points for trying...
Second guy goes through the whole thing, and comes up with Ehlers-Danlos, but he's not sure which type, because there's "Like three different types, right?" It's MY turn to laugh now as I inform him there are many more than 3 different types, and I have the Hypermobile type.
At this point I got to show off my pretty Medical ID Dogtag (IdentifyYourself.com), on the front is my name, and on the back it says:
"EHLERS DANLOS SYNDROME
HIGH RISK OF JOINT
LITTLE OR NO TRAUMA
The nice doctor guys said it was nicer than a lot of the bracelets they've seen. I agree.
After all of this fun, I am nearly crying because of the ridiculous torture they have inflicted upon me. And the first guy tells me it's a couple of stretched tendons, and I need to go buy a brace, and wear it "until it's healed" no time frame on that one.
I'm VERY VERY tempted at this point to go back and request that they cast the stupid thing, because this brace, in order to be effective, needs to be TIGHT. When it's tight enough to be effective, it either cuts off some circulation to my toes, or it digs into my shin, and the top of my foot (or both). It also has the added bonus of needing to be removed for sleeping. Waking up at 3am on a Saturday is bad enough without the "HOLYMOTHEROFGODPAIN" that comes out of my mouth because I had the nerve to move my foot as I slept.
The only problem with this is I work for a living, and taking another half a day off to go to the cast clinic is not really an option.
So for now, I get to pretty much suck it up and deal with it.
Spellcheck is funny, it doesn't recognise: Ehlers, Danlos, Hypermobility, Marfan, Hypermobile, or HOLYMOTHEROFGOD as words...
Wednesday, September 16, 2009
Monday, September 14, 2009
I wore high heels.
I drank some alcohol.
Now picture someone with really loose joints going down some stairs. Now imagine this person has little to no balance at the best of times. Plus alcohol, and high heels.
I put my left foot on the top stair, lifted my right foot, and by the time all of my weight was on my left foot... BAM! Dislocated my ankle.
Usually I'm pretty good at catching myself when I randomly dislocate something and start to fall over, but not when I'm slightly intoxicated, and wearing high heels. My right heel caught on the second stair, so my right ankle collapsed, I landed on my knees a few stairs further down, and all of my weight was then transferred to my left foot, which in retrospect, most likely caused it to dislocate either further, or in a different direction.
Luckily for me, being intoxicated helped to put me to sleep that night.
I was convinced that I had broken my ankle, but I wasn't going to go to the hospital at 3am, especially when I know it's not an "emergency" and then you have to wait for a ridiculous amount of time because it's Friday night/Saturday morning.
When I woke up in the morning I checked it out, and it looked fine, no swelling, only mild bruising on the top of my foot. But being me, and having sustained various injuries, I didn't think it felt like a dislocation, or a sprain, or a pulled muscle, or tendons or ligaments. It felt like bone, and it felt like broken.
Went to the hospital... got there at 7:30 Saturday evening. They triaged me, sent me for x-rays, had the x-rays done, looked at, and sent a doctor man to talk to me, explain there was nothing broken, and set me up with a follow-up appointment with ortho at the cast clinic. I was out of there at 9:30pm. It was the fastest door-to-discharge I've ever had in my entire life.
So at the hospital, I've noticed they're really good at telling you what's NOT wrong. "Your ankle is NOT broken, you're being discharged, have a nice day!"
I'm the kind of person where I think I would rather pull out one of my toenails with a rusty pair of pliers than go to the hospital. I don't go there unless something is wrong. I would like to know what IS wrong, not just what's NOT wrong.
Am I too demanding?
Oh, and my favorite part...
"HOW did you injure your ankle? You fell down the stairs? Oh, you dislocated it FIRST? And THEN you fell down the stairs? Which caused you to injure it AGAIN?"
Pretty much the conversation I had with every single person at the hospital.
Tuesday, September 8, 2009
Umm... Life has been extra mean to me lately. I have my personal/personal crap that I'm dealing with, my personal/health crap that I'm dealing with, my personal/business crap, my business/business crap, my health/business crap, and my other crap...
So I haven't had time to post anything... and I STILL DON'T HAVE A COMPUTER AT HOME. Not that I'm complaining or anything... (If you could see me, you'd wonder how my eyes stayed in my head with that eye roll... and the sarcasm... not dripping... it's like a cascade, or a waterfall... or if the Hoover dam burst...)
I've almost decided to give up solid foods, and switch to a liquid diet, so probably some variant of slimfast shakes, meal replacement shakes, or ensure, as my digestive system is horribly horribly ineffective at present. Add to that all of the usual female-specific cramping, and the fact that my womanly parts are messed up right now, and you may have some idea of the abdominal pain I've been suffering these last few weeks.
Happy news!!! I received an order for some hats! There's a little store in the trendy part of the city that ordered 10 hats, with a total of 50 interchangeable flowers. I started last Saturday (Aug 29th) and I finished them this Saturday (Sept 5). It was a lot of work. I also have an order from a friend for a crocheted bear (like the one I made for my niece), but blue, 'cuz it's for a boy.
More happy... My hubby and I had our second wedding anniversary on Sunday! Didn't do anything exciting, but it's truly amazing what has happened in those 2 years!
On another note, I read a post about comments recently, and the topic of comment etiquette is intriguing. I see in my little Blogger info thing that I have 15 followers. I am truly amazed by that. There are at least 15 people in this world that care about me, and you guys don't even know me. You just drop in on my life, and read about my struggles, my pain, and my accomplishments. For that I am thankful. If you feel that your comments have to be witty, or funny, or informative, think again! I am happy to know that someone cares. Even if you just say "I get it" that's enough.
Edited on Wednesday, September 3rd to include:
I finished my blue bear yesterday night at 11:00 pm, and his head is wobbly, so I'm gonna make him a scarf, and send him to the studio for a photo shoot, and hopefully get some pic of some stuff...
Monday, August 10, 2009
The pretty hat of many flowers went to a pretty lady very far away from me.
The cute bear was for my niece's 2nd birthday. She loves it! She hugged it and kissed it, and was very posessive the second she took it out of the bag. I have heard (from her mom) that she sleeps with it, and takes it EVERYWHERE with her.
The pretty BLUE hat with 3 flowers I made for a friend that is friends with the first lady that I made the pink hat for(picures on an earlier post), and she wears it all the time (they both do :D). The 3 of us went out in our hats ( I made myself a pretty hat, and it's pink, and blue with a blue and pink flower) last night, and we got some pretty funny looks from some rather strange characters.
Monday, July 27, 2009
After getting a new blister and spending hours worrying if I was going to be able to get it done on time, I was rewarded with a VERY happy 2 year old that wouldn't put down her bear long enough for anyone else to take a look at it (I think I had happy tears in my eyes).
I think I got some mild heat stroke though, after being outside for 7+ hours on Saturday (30 degrees Celsius) and I subsequently slept from about 11:30 Saturday night until 3:30 Sunday afternoon.
I still feel exhausted, but not nearly as bad as yesterday.
Oh, and my chiropractor is being nice... since I need chiropractic adjustments, and I should be going every week or two, he is keeping me as a patient (at his house right now until he can get into another office) and he is going to charge me $15-$20 less than all his other patients. YAY ME!
Friday, July 17, 2009
Thursday, July 16, 2009
But... you can't win 'em all.
A while back I posted about some health issues I've been having. Well, my period was late, and I rather thought I might be pregnant. So I took 6 pregnancy tests (3 home tests, 2 pee-in-a-cup-at-the-doctor's-office tests, and one blood test) over the course of 3-4 weeks. All came back negative. Along with the blood test for pregnancy, the doctor had the guy draw blood to check my hormone levels, my iron levels, and several other things.
My doctor originally thought I had PCOS (poly-cystic ovary syndrome), and I thought that maybe I had a tubal pregnancy, or that my hormone levels were too low to register as being pregnant. When my blood tests came back, my iron levels were dangerously low, my vitamin D was really low, and the doctor told me that my iron was too low for dietary changes to bring it up to a normal level...etc.
I've been taking iron supplements for about a month and a half now, and I'm finally having another period. It's lasted 8 days... and counting... (usual for me is 5). So I'm a little bit less anxious than I have been recently, but more grouchy, crampy, bloaty...
On another note, I injured myself recently -dislocated my hip- while having sex. Usually, I can put it back in easily, and it's usually not too painful, but this time was different. It stayed out of place too long, and I couldn't get it back in all the way, and it still hurts.
My boss sent me on an errand at work the next day, and I was required to lift 2 wheels out of the trunk of my car. In light of my recent hip injury, I thought it would be beneficial to carry both of the wheels at the same time, and only make one trip, as opposed to walking twice the distance (50 feet-ish each direction). So I picked up one wheel in each hand (they're not light) and I started walking. By the time I got them to where they were going I had dislocated 2 fingers; my middle finger on my right hand, and my index finger on my left hand. Apparently, I'm not supposed to favor any joint in my body, because it will cause unexpected casualties in other, unrelated parts of my body.
Oh, and I watched to new Harry Potter movie last night, and it was pretty good, except they keep leaving Dobby out of the movies, and changing which characters do what.
Friday, June 26, 2009
I would recommend a bebook or similar device for anyone who has troubles with heavy/awkward books. Or for anyone who downloads books, but can't look at a computer screen for hours on end. Or even more practically, if you're going to school, instead of carrying around 50 pounds of books, you could carry an ebook with all of your necessary reading material in it, and it doesn't weigh much at all or take up much space (the only difficulty would be finding copies of the books online, and most schools don't offer them except for special circumstances).
I've noticed that the pain in my wrists comes in waves. Sometimes they seem as perfectly functional as I can hope from my body, and other times it's as though if I move them, they might fall off. A bit dramatic sounding, but that's what it feels like.
I've also noticed that my hips and ankles are feeling really loose. I sat in my car too long yesterday, and when I got out, I had to spend about 5 minutes to put my ankle back in place... My neighbour saw me limping slowly toward the house, and asked what was wrong... I told him my foot was on crooked. With my hips it seems like any time I take a step, they click, and when they've had enough clicking, they start to sublux, and once the novelty of that's worn off, they'll throw in a dislocation, and try to introduce my face to the pavement...
On another note, I haven't been sleeping much or well in the last 2 weeks, and I am alternately giddy and zombified...
But thankfully, I can still crochet, and my brother is looking forward to getting his sweater for Christmas :)
Friday, June 5, 2009
Well, that is no longer the case. For the past two weeks, I've had a weird feeling in my right wrist, like it's fatigued after I write. A few days ago the feeling turned into pain, and it's almost unbearably painful to write more than a few sentences at any one time.
Yesterday, at work I had to staple a rather large file, which meant I had to use the rather large stapler. It's a job that would usually require the use of my right hand to use the lever, and my left hand to steady the paper... When I got to the stapler, I looked at it... It seemed to stare right back at me... So I steadied the paper with my left hand, pushed the lever down enough that I no longer had to steady the paper, then I used BOTH hands to push the lever down. I felt the most sickening feeling I think I'm capable of. My left wrist slid out of place... I don't know exactly how far, but it looked like more than 3/4 of an inch. I immediately looked away and stopped pushing down. My wrist made a wet sucking sound, and slid back into place.
Thankfully it wasn't painful. It didn't swell up, it didn't bruise, but afterward it felt really unstable. It still does, and so does my right wrist.
In the last few days I have been subluxing the joints in my fingers, as usual it takes little or no pressure, and I have to almost massage them back into place. I'm going to start looking for some wrist braces or something, because with my left shoulder as bad as it is I have to drive using my right hand, and it really hurts my wrist when I drive now.
Thankfully (as of 2 days ago) I can still crochet without injuring myself.
As it turns out crocheting is about the only thing I CAN do without causing severe pain in my wrists. I did dishes last week and almost cried from the pain, and it took me about 2 hours to finish them with all the breaks I needed to take. I've found that I need to set my books down when I'm reading them, because the weight of the book is too much to hold for any length of time. And I was folding laundry on the weekend, and OMG OWWWW... That's all i have to say about that.
Thursday, May 28, 2009
Anyway, I had some issues, and I tried to figure out what they were on my own... (YAY Google!). I couldn't figure it out, but I thought I knew, so I went to the doctor (for confirmation), and he thought he had it figured out (different answer than I had come up with), and he sent me for blood work, and I have been anxiously awaiting THE ANSWER. He got the results from the blood work last Friday, but since he is not my family doctor (because I don't have one) I had to get my results from a walk-in appointment, so I couldn't go until yesterday.
We were both equally wrong. (I'm just glad I wasn't more wrong than he was).
Results are: my blood iron saturation is at 8%. It's supposed to be around 55% to 60%. The doctor told me that in order to get my iron to "normal" levels I will have to take an iron supplement every day for the rest of my life, and while I'm at it, continue taking the 2000mg of Vitamin C daily, along with Vitamin D, and hopefully that can help with some of my joint pain, and energy levels. Oh, and I am no longer allowed to donate blood. That makes me kind of sad.
Aside from all of that, my hubby had his hip surgery, and he is recovering, but the damage was a helluva lot worse than they thought, and it looks like some time in the future he will need to have a hip replacement. But his doctor is looking at prolotherapy for his knee, and that will hopefully be helpful.
Monday, April 27, 2009
We went to a used book store, and we each found out of print books that we've been looking for, like 6 each I think, and we spent $50.00 on books.
I have to say that the worst part about the entire trip was sleeping in the tent on an air mattress. I subluxed my hips multiple times each night, because of the position I had to sleep in, and every time I did, I'd wake up and have to switch positions, then like 5 minutes later I'd get a cramp and then have to switch positions again.
So, Friday, I tried to get into the chiropractor before we left, and I called, and I had missed him, he was out of the office for the day. So I called his other office, and I talked to the receptionist, and she called the chiropractor, and he said he'd see me at his house, and gave me the address. I googled it and went over to see him. He adjusted me, and I told him about my blog, and the fact that I posted about him, and my doubts about him, and the nail gun it felt like he used on me. He didn't have any problems with it, and he laughed a the nail gun part.
I'm going to go see him again after work today :)
Friday, April 17, 2009
I went to get lunch for the office staff, and I went to to food court at the mall near us. I got out of my car and started WALKING... not limping, not waddling, not shuffling, but walking. It was amazing. So after work, I went shopping, and I continued to walk. My left knee was getting fatigued at the end of shopping, but it was so much better than the constant pain I'm usually in.
So I went home from there, and I started doing my dishes; while they were soaking, I put some laundry in the washing machine. I got my first sink full of dishes done, and I went to check on the laundry... It blew the breaker... So I turned it back on, and went back to my dishes. When I was done my dishes, I went to check on the laundry again, and the breaker blew again. I turned it on, but it wouldn't stay on for more than a second. So I checked, and nothing else on that breaker was turned on, so I stood by the breaker box and held the darn thing in the "on" position. For half an hour. When the washer was finally done, I switched everything to the dryer, and went out shopping again.
I was supposed to get food, toilet paper and light bulbs. I forgot light bulbs. With the weird power situation where I live, we burn out a lot of light bulbs, I've tried the low energy, the normal ones, the "green" ones, the cheap ones, the expensive ones... They last about a month on average... So anyway I got home from my second shopping trip, and I took in all the stuff i bought, then I went out and cleaned out my car.
After this, I still had unspent energy, but it was like 9:30 at night, so I started watching a movie, and painted my nails. Then I didn't like the color, so I took it off. Then I finally went to bed.
I haven't had that much energy in so long, I wanted to use it all up, just in case it's that long again before I have that kind of energy, but I ran out of time to do stuff.
Needless to say, I'm a little stiff today... But it was so worth it.
Thursday, April 16, 2009
About 2 minutes after he was done adjusting me, I felt a really stupid pain under my left shoulder blade, almost like someone was stabbing me in the lung every time I took a breath, but after a few minutes of NOT crying (but I was really close) it started to fade. Then I went to walk to the front to pay, and it felt like instead of using the clicky thing to adjust my hip, he used a nail gun. That feeling didn't go away until this morning, but it still feels oddly tight/burning.
So after my chiropractor appointment, I went to the mall to buy a few supplies for camping (going on a road trip to Vancouver). And I was shuffling, I couldn't even waddle for the first half hour. After a while I realised that I wasn't limping, but it wasn't because it didn't hurt, it was because there was a war between my left knee and my right hip - they were deciding which was the worst joint, and they tied.
Then I went to bed, and woke up this morning with some weird pain in some unexpected places. I'm going to go back to the chiropractor when I get back, mostly because I don't want to spend $50 for my first appointment with someone else, but also because he does it differently than my old chiropractor, and I'm interested to see if I get any kind of beneficial results with his method.
Monday, April 13, 2009
I 'm having some weird issues with my ribs lately. I used to have one rib on the left side that frequently subluxed, and it was easy to put back in place. Now I have (approximately) 4 ribs on the left side, and 2 on the right side that are subluxing FREQUENTLY, as in multiple times a day, and they take longer to put back in place, and they're more painful.
Aside from that, I had a wikkid Easter with all my family, and I ate a LOT of good home-cooked food ( YAY no instant mashed potatoes and KD Mac and Cheese!!!)
Oh, and my mom and step-dad built a 100ft wooden sidewalk, and my mom told me afterward "I think I have SOME idea of the pain you go through every day." - This was after she saw that I did as little as physically possible for 3 days, and saw me wince in pain and limp around the house.
Oh, and weird thing last night... I had NO balance AT ALL. It was like I was REALLY DRUNK. I hadn't had anything alcoholic to drink, and I can't think of anything that I could have eaten that would do it. I was also NOT taking ANY medications for anything. Anybody know if this is an EDS thing, or if it might be an EDS-seems-to-come-along-with-a-billion-other-medical-zebra-type-issues thing? Or is it just a normal-people-get-dizzy-too thing?
Monday, March 23, 2009
I, on the other hand, sublux my shoulder so often I barely even notice anymore, and dislocate it frequently. I can pop it back into place 'easily' and I've never been hospitalized with a dislocation. By the time I make to the hospital, or doctor there is nothing "wrong" with my joints, and they can't understand how it could have been dislocated, and popped into place again in such a short amount of time, and with no medical help. With my left knee, I dislocated it severely, and when I tried to stand up, the weight of my leg pulled it back into place, and I couldn't get a doctor to listen when I said it was dislocated... They simply didn't believe me. They told me I probably just stretched the tendons or ligaments, and that I should wear a brace when I walk or stand and it should be fine in a couple of weeks. This happened almost 3 years ago, and I still walk with a limp.
Okay... so back on topic... Even though I do have a friend whom I've known since I was a year old with the exact same genetic disorder I have, I still feel all alone, like I have nobody to talk to that could possibly understand me. Oh, and my husband has a disorder similar to mine, but all of his joint issues have specific reasons behind them. His left knee is screwed up because he was hit there with a baseball bat years ago. His hip is screwed up because of a work related injury. So again, it's hard for me to talk to him, and to have him understand that even though you can't SEE anything wrong with me, I am in pain all the time. Since I dislocated my right knee (not as bad as my left) I occasionally don't walk with a limp, and people close to me assume it's because I'm not in pain, but the reality is that I am in more pain than usual, it's just pretty even between the two knees, so I walk without a visible limp.
Thursday, March 19, 2009
I have a sinus infection. The first sign that anything was wrong was last Wednesday, when I was achy all over. Then Thursday morning I woke up, and I could barely breathe. I went to work anyway, but they sent me home by noon, then I went to the doctor and got some antibiotics. I was off sick Friday too. Saturday and Sunday I was too sick to do anything, except a little crocheting. I finished 2 more blankets.
That's all I've got for now.
Friday, March 6, 2009
That's all I've got for now... the stupid keyboard at home doesn't like me, so I'll have to keep posting from work.
Thursday, February 26, 2009
When I got home, I decided to make the stew I had just bought the ingredients for. In order to do that without driving myself crazy, I had to sweep the floor, and do the dishes, and clean off the counter, before I could start making the stew. I had been avoiding the dishes for a while, so I had to wash quite a few. When I was done washing the dishes(amazingly-no dislocations involved), I took a break to let them air dry, then I put them away, washed the counter, and started prepping for the stew.
When I had the stew ingredients in the pot and cooking, I cleaned up the counter again, then took another break for the stew to cook. When the stew was finally done, it was 10:00 at night, and I wasn't hungry. I watched a few episodes of Charmed, while the stew was simmering, and after it was done I watched another one before I put the stew in containers and into the fridge. When I was finally done, I sat down to read the last bit of the chapter of the book I'm reading ( The Mammoth Hunters, by Jean M. Auel).
My hubby got home somewhere around or after 11:00 from work, and I told him all the stuff I did, and he looked at me, and asked (in a not-unfriendly way), "Do you want a pat on the back?"
I'm sure if I was a normal person, my day would sound pretty routine... Work, go shopping, come home, tidy the kitchen, and cook supper... Nothing spectacular right??? But for ME, it was a HUGE day, and I was pretty darn proud of myself.
On a sad note, today was supposed to be my dad's birthday. He passed away 2 years and 3 months ago. He was a tow truck driver for AMA. He worked there for many years, and as a tribute to him, they put his old truck number on all of the trucks in the city, except the new ones... They haven't gotten around to it yet. I saw an AMA tow truck driver today, and I asked him to tell the people at AMA to PLEASE put my dad's number on the rest of the trucks. He went to his truck, and phoned someone at AMA, and told me they'd do it soon. I also told him to let everybody at AMA know that today is my dad's birthday.
Happy birthday dad, I wish you were here to celebrate it with us.
Monday, February 23, 2009
I started crocheting again, around September of last year, because I felt like I should do something, but I can't do a lot of physical stuff. So this is something I can do, and feel like I've accomplished something. I can't crochet for too long, because after a while it starts to bother my shoulders and my wrists, but I can keep at it long enough to feel like I've accomplished something.
Wednesday, February 18, 2009
I'm trying to find a way to convince my doctor to let me try prolotherapy: a sugar solution is injected into damaged ligaments or tendons, the solution can create an acute and localized inflammation, which can stimulate the body to repair itself. I think that with prolotherapy and large doses of vitamin C to help rebuild the collagen, there may be a chance to do some good.
The biggest issue I'm having with prolotherapy, is that the doctor wants to try it on my right shoulder first. I'm right handed, and I'm a receptionist... If the prolotherapy doesn't work, or if I'm in too much pain to write after getting the injection, I will be unable to work. On top of all that my right shoulder is my "good" shoulder, and if I couldn't use it, I wouldn't be able to drive any more either. I figure, try injecting my bad shoulder first... If it gets worse, I won't be much worse off than I am now... I can't lift more than 5 pounds with my left arm, I can't drive with my left arm, and I have to be careful picking up a cup of coffee... But, if it gets better, my quality of life would be improved.
If I do get prolotherapy, and it works on my left shoulder, I would then go ahead and get it done to both of my knees, then my hips before I would go for my right shoulder.
Ummm... New news... My niece is talking-ish. She knew my name when I saw her on the weekend, for the first time since Christmas.
Less exciting news... I have a cold. It sucks. My normal pain has increased, and I am experiencing more fatigue than I am accustomed to.
Thursday, January 22, 2009
I get to wash cars (some of which are standard, bad with my left knee). I have to go get lunch for the office, which includes walking through the mall, and carrying everything back to my car.
I know it doesn't sound like much, but the amount of pain involved is exceptional.
I've also decided to start myself on a high dose of Vitamin C, 500mg 4 x daily. Vitamin C aids in the production of collagen, and all the information I've found tells me that there are practically no ill effects if you take up to 2000mg per day. (Do not mistake this for medical advice, as I am in NO WAY qualified to give medical advice)
I will try to keep anyone who cares updated as to whether this helps or hinders in any way.
Tuesday, January 13, 2009
It's almost been a year.
The last time I wrote, I only had 3 joints that needed surgery; my left shoulder, my left hip, and my left knee ( in case you are wondering, EDS effects the non-dominant side of the body more than the dominant side [don't tell anybody, my rheumatologist said it's a secret]). Now, I have those three joints, plus my right knee which require surgery.
I have also found out that my husband has Marfan syndrome.
My geneticist laughed at me.
He told me there is a chance that we may have:
Normal children (25%)
EDS effected children (25%)
Marfan effected children (25%)
EDS and Marfan effected children (25%)
And that's if I make it the necessary amount of time into my pregnancy that a baby can survive outside of the womb.
So, if I conceived and the baby was effected by both EDS and Marfan syndrome, I could potentially carry a child that would dislocate its limbs in-eutero, or come out disfigured. Since EDS and Marfan are both genetic connective tissue disorders, and they effect different genes, there is a chance that the child could "double up" on connective tissue disorders.
It's pretty scary.
If anybody out there has ever heard of a case where a person was diagnosed with both Marfan syndrome, and Ehlers-Danlos Syndrome, could you please let me know where I could find information about it?