tag:blogger.com,1999:blog-77194521762867745782024-02-07T00:59:22.951-07:00Ehlers-Danlos Syndrome-Deal With ItBubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.comBlogger168125tag:blogger.com,1999:blog-7719452176286774578.post-70886408151451892872013-06-05T01:13:00.000-06:002013-06-05T01:13:06.736-06:00Mombie... It's like a mom, but a bit more zombified.<br />
<br />
It's amazing how little sleep you can live on when you're a new mom, and an insomniac...<br />
<br />
When I do finally have an opportunity to sleep (like right now, as my tiny person has been asleep for 5 whole hours in a row!) I am so horribly wide awake, and with the whole <a href="http://b-u-b-b-l-e-girl.blogspot.ca/2011/12/i-found-interesting-article.html" target="_blank">EDS/epinephrine</a> thing, I couldn't sleep right now unless there was an elephant tranquilizer involved...<br />
<br />
So, my sweet little not-gaining-weight-fast-enough person has now gotten over that... She sucks down no less than 10 ounces of formula per day (mostly when mommy's sleeping, and daddy is watching her {such a good hubby I have}) as well as all the boobs she wants (which is a lot... Boobs are Awesome).<br />
<br />
She is hitting all of her milestones earlier than the books say "most babies should be able to." This includes being able to roll from her tummy to her back, on a soft surface like the bed, since she was a week old. Rolling on the floor took a couple more weeks, and I've now seen her roll both directions from her tummy.<br />
<br />
The Nurse Bully from last post turned out to be worse than I thought. She called my doctor, and tried to convince him that I was a bad mother, too. She called him twice, complaining about me. He told me about it at the last visit, and said that he isn't at all concerned about the things she was complaining about, and he could completely understand why I told her never to call me again (which is one of the things she complained about, as apparently nurses are supposed to keep in touch with new mothers on a weekly basis for some reason). <br />
<br />
...<br />
<br />
Did you know... That babies are the best comedians?<br />
<br />
They are the most hilarious people in the world. <br />
<br />
My tiny person has 1001 faces, and most of them make me laugh. Some of them look like grumpy old man faces, and some of them are serious faces, and there's a plethora of different happy faces. Then there's the hungry face, and the sleepy face, and the full face. <br />
<br />
She also has the funniest farts (you'd think the house is full of obnoxious teenage boys by the sound of it). Seriously, they've turned my husband into a five year old again, as often as he's laughing at them. And all the squirming and grunting she does when she's got gas is cute. <br />
<br />
Then there's the sleep-smiling, and the eye-crossing, and the million and one other things that you just don't know babies do until you have one of your own. <br />
<br />
...<br />
<br />
Being a parent is a funny thing. I want my baby to "hurry up, and slow down." I can't wait for the next milestone to be hit, but I don't ever want her to grow up. She's perfectly perfect the way she is. BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com1tag:blogger.com,1999:blog-7719452176286774578.post-84632838429118218542013-04-22T11:40:00.001-06:002013-04-22T11:40:55.802-06:00Bullied By NursesMy baby, who was born at 7lbs 11oz, and is 19 days old today, has not returned to her birth weight, after losing over 10% within the first couple days of life. <br />
<br />
She eats, she sleeps, she pees, and she poops. Frequently. <br />
<br />
She has quiet alert periods. <br />
<br />
She has an extremely strong cry.<br />
<br />
All of the signs point to the fact that she is doing well, except for her lack of weight gain.<br />
<br />
The nurses we have spoken to, and seen several times now, all kept telling us that she needs to put on weight faster, and I need to supplement my breast milk with formula, because she's "not getting enough milk."<br />
<br />
They're telling me that I'm starving my baby.<br />
<br />
After an appointment with the nurse, at which we took another weight measurement, which was under the birth weight, and another lecture about adding formula, and another lecture about breast pumps, and the need for getting more milk into my baby, we were told to take her to the children's hospital emergency department for an assessment.<br />
<br />
Up until this point, I, the mother of this perfect little baby, was not concerned.<br />
<br />
But now they tell me to go to Emergency? As in, the place you go when there's an immediately life-threatening event occurring???<br />
<br />
Now I'm a bit concerned.<br />
<br />
After subjecting my little lady to the indecency of an I.V. in her little tiny hand, and a blood draw, and pokes and prods, and rectal thermometers, and nurses, and doctors, and tests, and bright lights... Guess what they found?<br />
<br />
My perfect little lady is healthy. She's perfectly perfect, except for the lack of sufficient weight gain.<br />
<br />
Aside from further, frequent, weigh-ins to check her progress, we need no further intervention at this time.<br />
<br />
Now, you know what I want to do?<br />
<br />
I want to yell at all the people who made me feel two feet tall, all the people who made me feel like I was starving my baby, all the people who tried to tell me I was a bad mother (without ever saying those words). I want to tell them all to piss off, and leave us alone, because we're bloody well fine, dammit. <br />
<br />
Mother's instincts told me I was doing well, they were right <em>(I WAS RIGHT)</em>. But I was bullied into tests, and I was bullied into feeding formula to my baby.BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com2tag:blogger.com,1999:blog-7719452176286774578.post-21972084068007346092013-04-14T16:28:00.001-06:002013-04-14T16:28:27.410-06:00Beautiful Baby GirlI had my baby! And she's perfectly perfect! 10 long fingers, 10 long toes, cute button nose, and the lungs of an opera singer.<br />
<br />
When I got to the operating room, they sat me on the table, and got me full of I.V.'s, and set up for the epidural. I had a nurse standing in front of me, asking me questions, and holding my hands. I'm assuming it was her job at this point to keep me calm. After a few minutes of getting everyone set up, the anaesthesiologist came over and said "Take a deep breath. I'm going to insert the needle in 3... 2... 1..." *poke* At this, I winced ever so slightly, and continued my conversation with the nurse in front of me. She looks at me (with a surprised-almost shocked- look on her face), and says "You have an extremely high pain tolerance." So after a minute for the freezing to take minimal effect, he jabs me with the other needle, and it's totally off-center. I can feel that it's off-center, and after a couple seconds of jiggling, he says we'll have to try again. Second stick was off-center the other direction, but in an acceptable position, so they got me to lay down.<br />
<br />
At this point, they start loading me up with drugs, and poking me, and pinching me, and asking what I can feel. It soon became apparent that I was only freezing on my left side, so they tilted me to the right, and injected more drugs, and poked and pinched some more. After what felt like an eternity, everything that needed to be frozen was frozen, and they sliced me open. <br />
<br />
During the delivery portion of the event, they have to push the baby down from the outside... Which feels kind of like having an elephant sit on your chest. there's some tugging sensations, some weird pressure sensations, and "It's a girl!" followed by the most beautiful cry I've ever heard. Then exclamations of "She's already pooping... And peeing! All over the floor!" Then they take her to the incubator for measurements, a needle, and some eye goop (which took 2 doctors to administer, because my little lady was very stubborn from the get-go).<br />
<br />
They used dissolving sutures (apparently I'm allergic to staples, as well as them being a bad idea for EDSers), and used more of them than normal people would require, commenting that my skin was thin and stretchy. Aside from a bit of puckering, the skin seems to be healing quite well, and the incision is almost invisible, just a pink line, with one little scab left.<br />
<br />
While they were stitching me up, I felt odd tugging sensations in my pelvic region, and it also felt like someone was pulling on my lowest right rib... I commented on this, and someone promptly went about massaging, and manhandling the rib back into place.<br />
<br />
After this point, details are a bit fuzzy, as I was pretty drugged for the first day, and since then I have been running on extremely little sleep.<br />
<br />
They kept us in the hospital for 4 days. First they said she was good to go, but I needed more time for my incision to heal, then I was good to go, and she had lost over 10% of her body weight, so we had to stick around until she'd started gaining again. <br />
<br />
Then I had a couple of nurses report me for a "less than happy" mood, which was followed by the pediatrician accusing me of being schizophrenic, and ordering a psych consult (fun, right?).<br />
<br />
The psych consult was just about the best experience I've ever had dealing with mental health professionals, as well as being the most comfortable I'd felt since being in there. She told me I was perfectly fine, and that the extreme tiredness, combined with the stress of having a newborn, and the doctors, nurses, and other staff coming and going at all hours of the day and night (and the wonderful construction going on directly above my room), was perfectly natural. She said I was coping as well as could be expected, and gave me a clean bill of health. It was gratifying. I'm used to doctors calling me different types of crazy for different reasons... But being told I'm perfectly healthy (emotionally) by a trained mental health professional has never happened before. <br />
<br />
As soon as we got home (me, baby, hubby, and my mom for support) everything was so much better. I wasn't stressed. I wasn't anxious. It turns out I didn't even need my mom for anything, except company, and I had things well under control.<br />
<br />
We've already had our first doctor's appointment, with a new doctor, as mine has moved, and he was a jerk, so I opted to see one of the other doctors who was taking patients, and so far he seems to be a good doctor, and a good listener.<br />
<br />
I've dislocated my pelvis again, as well as most of my left ribs, shoulder, tailbone, collar bone, etc. But I seem to be doing pretty well, as I can hold my baby for extended periods of time, with significantly less pain than I was expecting.<br />
<br />
I think that's about all the important stuff... <br />
<br />
I hope everyone is doing well!BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com1tag:blogger.com,1999:blog-7719452176286774578.post-60121113996342454262013-03-24T10:13:00.001-06:002013-03-24T10:13:45.520-06:00Half a DiagnosisI saw the Cardiologist on Friday. She was wonderful. She took all my complaints seriously, and we had some pretty good conversation.<br />
<br />
She told me I have either Vasovagal Syncope or POTS, and that since the treatment for both is the same, there's no point looking for the actual diagnosis. <br />
<br />
The treatment is salt, fluids, and compression socks. So, basically, keep doing what I've been doing, and buy some compression socks. <br />
<br />
Apparently beta blockers are no longer being used in the treatment of POTS, as doctors are finding we need higher and higher doses, and once we're taking beta blockers, we can never stop taking them.<br />
<br />
10 more days until baby comes!<br />
<br />
I'm excited! And nervous!<br />
<br />
And tired.<br />
<br />
I can't sleep in any position for more than about 20 minutes. I wake up 47 times per night with dislocations, and because I have to pee. I also have some pretty horrendous lower back pain. Hopefully, once the baby's out, the pain, and dislocations will go back to their previous levels.BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com2tag:blogger.com,1999:blog-7719452176286774578.post-53599986107537996972013-03-14T11:23:00.001-06:002013-03-14T11:23:57.208-06:00Cardiologist!Apparently, a resting heart rate of 130bpm followed a few days later by a blood pressure of 149/98 is enough to get me in to see a cardiologist next Friday.<br />
<br />
This was the first time I was immediately ushered into the room where they check your blood pressure, after walking in from my car, instead of having to sit in the waiting room for 15-45 minutes. So I'm thinking that had something to do with my blood pressure. After sitting down for 5 minutes, it went down to 138/89, and my heart rate dropped to 108. This is the first time I can remember having abnormally high blood pressure. It's usually on the low side of normal.<br />
<br />
They're going to set me up with a 24hr Holter Monitor, hopefully before I see the Cardiologist, so she can look over the results.<br />
<br />
After being on a waiting list for a cardiologist for over 2 years (and who says Canada has great Health Care?) I'm finally going to see one, and only because I'm pregnant.<br />BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com0tag:blogger.com,1999:blog-7719452176286774578.post-10467146425554200622013-03-11T14:53:00.001-06:002013-03-11T14:53:22.340-06:00Anesthesiologist ConsultI saw a really cute doctor today! <br />
<br />
And he was really smart, too!<br />
<br />
Gotta love it when that happens, eh?<br />
<br />
I went into my consult expecting to spew out all of the EDS-relevant facts, figures, and information I've found through years of research, and talking to other EDSers. And guess what? I didn't need to tell him anything!<br />
<br />
Not a single thing!<br />
<br />
All of my little tidbits were already in his pretty little head (seriously, the guy was gorgeous). I was pleasantly surprised. <br />
<br />
He went over the 3 different ways of anesthetizing someone for a c-section, and all of the inherent risks/benefits for otherwise healthy people, as well as the EDS-specific risks/benefits, as well as the POTS-specific risks/benefits, and the EDS & POTS-specific risks/benefits. <br />
<br />
As I said, very well versed!<br />
<br />
He performed a poor-man's tilt-table-test on me (lay down for 10 minutes, check blood pressure and heart rate, then stand up quickly, and re-check blood pressure and heart rate... Keep standing until a specific interval has passed with heart rate not going back to normal), and he agrees that I most likely do have POTS, even though it effects my heart rate much more noticeably than my blood pressure. <br />
<br />
It seems that the most likely way they'll anesthetize me, is with an epidural. This way they can more safely leave a catheter in my spine, and push more medication as necessary. With the POTS, they would also slowly work up to the dose, to avoid blood pressures and heart rates going wonky. He was worried that having a spinal block, which is a one-shot deal, could become problematic if the anesthetic wears off too quickly. It's also easier on mom, and baby if it's done under a regional anesthetic, as opposed to a general.<br />
<br />
The baby date is getting closer, and I'm getting nervous!BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com0tag:blogger.com,1999:blog-7719452176286774578.post-52066452238400737792013-03-04T13:42:00.001-07:002013-03-04T13:42:42.304-07:00Bad NightLast night was horrible. <br />
<br />
I had to get up to pee 3 times, even though I quit drinking anything long before I went to bed, and made sure to pee right before bed... My bladder is a punching bag, apparently, and a trampoline, and it's frustrating.<br />
<br />
Also, last night I had the misfortune of dislocating my hips, shoulders and ribs multiple times. I was unable to lay on my back, as it was hard to breathe, and I had to switch from my right side to my left side, and back again, about every 15 or 20 minutes, as I dislocated the shoulder and hip I was laying on. <br />
<br />
My tiny little Tummy Monster is also beating relentlessly on my sciatic nerves, causing searing lightning-bolt pain, and numbness in my legs. And she's got herself wedged into my pelvis in such a way that my stupid pubic symphysis is separated almost constantly. Same goes for my stupid tailbone, on both sides. And my stupid SI joints. Basically, it feels like my pelvis is jello. Painful, painful jello.<br />
<br />
All this to say, I got no more than an hour of sleep last night - total. I'm fairly sure I'm capable of functioning with little to no sleep, as it's been the norm for me due to insomnia for the past umpteen years, but I really would like to be able sleep <em>sometimes.</em><br />
<br />
I've reached the point in my pregnancy where putting on socks and shoes is extremely uncomfortable. So is just about everything else. I've only got 4 or 5 more weeks, though, before she's on the outside, and I'll have my body to myself again (don't laugh, I know she'll be pretty much attached to me still).<br />
<br />
Oh, and as if I hadn't enough to deal with... I'm twitching like a crazy person again. <br />
<br />
<br />
<br />
BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com2tag:blogger.com,1999:blog-7719452176286774578.post-16905373603261569322013-02-26T09:22:00.002-07:002013-02-26T10:18:48.033-07:00Odd MomentsToday would have been my father's 52nd birthday. <br />
<br />
Would have been.<br />
<br />
If he hadn't died ,unceremoniously, without warning, and for no apparent reason, 6 years, and 3 months ago.<br />
<br />
So, for the past 6 years, and 3 months, I have been having a dream. It's got different details, but the broad strokes are always the same:<br />
<br />
He shows up, unannounced, and says "I'm sorry I faked my death, can you ever forgive me?"<br />
<br />
Usually, at this point, I either hug him, and start crying, or I punch him in the nose, and scream at him (and then hug him and start crying). <br />
<br />
The frustrating thing is, though, that the dream will continue, and I will spend a week or more catching up with my dad, telling him about all the horrible things that have happened since he died, and feeling like I might be able to forgive him for leaving, because his reasons (though never the same) were good enough.<br />
<br />
Every time I have this dream, I wake up expecting it to have been real. I wake up expecting my dad to be alive. I wake up, and reach for my phone to call him.<br />
<br />
Then the dream shatters, and reality comes crashing down. And I have to live through his death all over again. <br />
<br />
Pregnancy hormones cause dreams to be much more vivid. <br />
<br />
It sucks.<br />
<br />
Not only do I miss my dad, and feel bad that he's never going to meet his granddaughter while I'm awake; I also spend time with my dad, being excited about the baby, and even having some dreams where I can see the two of them playing together, which I have to wake up from. <br />
<br />
Happy Birthday, Dad. I miss you.BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com2tag:blogger.com,1999:blog-7719452176286774578.post-13591282386970192982013-02-19T15:22:00.000-07:002013-02-19T15:22:36.265-07:00No News is Good NewsI have my third ultrasound scheduled for tomorrow. I'm pretty excited to see my little Monster's face again! <br />
<br />
As of last week (at 31.5 weeks gestation) I had gained a whole 8.5lbs from my pre-pregnancy weight. Nobody seems concerned that this is too little at this point, so I'll keep doing what I've been doing (which is eating lots, and lots, and lots of fruits-as well as pretty much anything else that comes close enough to my mouth to be devoured...). <br />
<br />
I've found that Tums, and a glass of milk about an hour before bed keeps the reflux/heartburn at bay overnight (and it helps me get my Calcium). Yay!<br />
<br />
I still can't sleep much. Getting a few hours a night, between EMERGENCY PEE RUNS. It's crazy... I'm laying there, with no notion that I've got anything in my bladder, then suddenly my bladder is kicked, punched, or head-butted, and it feels like I won't have time to make it to the bathroom. Add to that the part where sitting up to get out of bed requires some of the same muscles as peeing, and I'm surprised I haven't wet the bed. <br />
<br />
My pelvis is still loose, and dislocatey. My shoulder is still ridiculously loose, and unstable. My arm randomly goes numb, or tingly from either nerves or blood flow suddenly getting smushed.<br />
<br />
I went to the optometrist last week, because my vision has been time-to-get-new-glasses fuzzy. I've been wearing glasses for 20 years, so I know when fuzzy is fuzzy enough to require a new prescription. But apparently, I'm totally bonkers, as my vision was 20/20 when he checked it on Thursday, and the only reasonable explanation is that the oils, and other liquids on my eye are not properly balanced, causing fuzziness (which apparently goes away if I blink 47 times in a row).<br />
<br />
BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com0tag:blogger.com,1999:blog-7719452176286774578.post-12618546238621186482013-01-22T14:34:00.001-07:002013-01-22T14:34:58.972-07:00Where'd my toes go?I have to lean over a bit to see my toes now. If I don't lean, all I see is boobs and belly.<br />
<br />
I'm waddling quite nicely now. Somewhere between a duck waddle, and a Quasimodo waddle-shuffle, depending on how much/which things hurt.<br />
<br />
I've got some lower back pain from my tummy throwing me off-balance, and I have to stand, and rock myself back and forth to fix things. It's amazing how many things are fixed by rocking... Lower back pain, dislocated tailbone, dislocated pelvis, constipation, gas pain, and restless baby... Gently rocking for a few minutes gets everything back to where it should be, and convinces my little monster that my ribcage should not be her hideout.<br />
<br />
On another note, I'd like to find the person who smuggled steel-toed boots, a pointy helmet, and a sledgehammer into my womb. Okay, not quite, but it's amazing how strong she is in there. <br />
<br />
I'm getting a shiny new car this week, because my current car is crap, and I don't think I'd feel safe having a baby in it. <br />
<br />
I think my appointment with the High Risk Pregnancy clinic next week is finally going to get me an OB/GYN. Amazingly, at 6 1/2 months, I still don't have one. <br />
<br />
My appointment last week with the Chronic Illness & Pregnancy clinic was interesting. For 2 hours I had a nurse, an intern, and a doctor asking me question upon question, and writing notes.<br />
<br />
Weird part, though, is that they knew enough about EDS that they told me, "we're not concerned, because you don't have the vascular type." Which is great, they know that Type IV is the most problematic when it comes to pregnancy complications, and such... But don't sit there and tell me that I'm going to be fine, especially after I've detailed the extreme dislocations, the extreme pain, and the scary-as-hell near-syncope events I had all through my first trimester, coupled with the ever-looming possibility that this pregnancy may end with me in a wheelchair. Telling me that "at least it's not type IV" doesn't earn you any brownie points. It doesn't make me feel better. <br />
<br />
Oh well. At least they knew some things.BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com5tag:blogger.com,1999:blog-7719452176286774578.post-69826706679797164092013-01-10T10:16:00.000-07:002013-01-10T12:58:01.057-07:00Tummy Monster is Kicking My ButtSo, I just passed the 6 month milestone in my pregnancy. I also finally got back to my pre-pregnancy weight, after losing 20 pounds in my first trimester. <br />
<br />
My pelvis now dislocates in up to 4 places simultaneously. <br />
<br />
My intestines seem to be doing their job again, since I started eating a lot more fruit. <br />
<br />
The tiny little person I'm growing can stretch to amazing lengths already, poking me in the ribs on both sides, as well as just above both hip bones, at the same time. It really is one of the strangest sensations I've ever experienced.<br />
<br />
I am exhausted, all the time. I still can't get much sleep, but I am getting some. <br />
<br />
My geneticist has referred me to 2 different high risk pregnancy centres, and I'm still waiting to hear back from them about an appointment.<br />
<br />
I saw my chiropractor yesterday, about the 4 wobbly bits in my pelvis, and he adjusted them (which really hurt) and they felt so much better afterward, for about an hour and a half. I had to break out my cane. He also gave me the number for a place in town that sells braces, and told me to see if they have any pelvic braces to help stabilize me.<br />
<br />
Also, my husband spoke to my prolotherapy doctor, and he seems to think we'll have to wait 3-6 months after baby is born to start prolotherapy again. I am really distressed by this, as I can barely walk for 10 minutes now, and I seem to be getting worse almost daily. Once I know his reasons for waiting that long, I'm either going to try to convince him he's wrong (if I think he is), or try to convince him to do it a different way, if it's the drugs/breastmilk he's worried about.BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com0tag:blogger.com,1999:blog-7719452176286774578.post-44399852508868025642012-12-13T12:10:00.001-07:002012-12-13T12:10:15.917-07:00Relaxin... Not RelaxingMy pubic bone is permanently subluxed now. It grinds against itself if I stand/walk more than 10 minutes at a time. My left shoulder hasn't been properly in its socket for over 2 weeks, probably closer to 3. <br />
<br />
Baby has also decided that when mom goes to sleep, it must be kickboxing time, as she doesn't sit still for at least half an hour after I've laid down. <br />
<br />
I'm still not sleeping nearly enough.<br />
<br />
But as far as the pregnancy is going, everything still seems to be going well. <br />
<br />
I am excited to meet my little tummy monster, but I don't think I've ever felt this unwell for this long before.<br />
<br />
I'm afraid of the next step... Being a mom... But I'm definitely looking forward to not being pregnant. <br />
<br />
Can it be April yet?BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com1tag:blogger.com,1999:blog-7719452176286774578.post-30032945029020778492012-11-29T10:12:00.000-07:002012-11-29T10:12:00.468-07:00Time For Fat PantsMy jeans were starting to get tight around my uterus, so I went out and bought some maternity pants. I'm still barely showing, and I've barely grown any, it's just WHERE I'm growing that's causing discomfort.<br />
<br />
I've now dislocated/subluxated my pelvis a total of 5 times (twice yesterday), and my right shoulder made a wet tearing sound when I reached over to my left shoulder to massage it on Monday. My arms feel like they've been used as a tug-of-war rope, and my entire upper body feels bruised. <br />
<br />
I've also got some new pain, which I can only describe as slowly stretching tissues, just to the inside of my hip bones. And my abs! Even though they never really did the core-supporting they're supposed to, it feels like I've done about a million sit-ups, and they BURN... Holy crap, ow.<br />
<br />
Oh, and now that my pants aren't squishing my uterus, with their too-tightness, I can't feel the the squirmy little monster most of the time now. Except when it's bladder=trampoline time, and I have to pee 5 times in an hour. <br />
<br />
I have so much stuff to do before baby comes. I need to go buy a new car, because I barely trust the one I have with 2 full grown adults, let alone a small helpless person. And I need to buy baby stuff. I have NONE. Nothing. At all. I'm totally unprepared. <br />
<br />
I got a call from my geneticist's office yesterday, and I've gotten a referral to the High Risk Pregnancy Clinic, as well as the Chronic Illness Obstetrics Centre. So I'll finally be having someone take a look at my lady bits (for the first time in 5 years), because I haven't had a family doctor in so long, and these things seem to get put on the back burner.<br />
<br />
Aside from pain, dislocations, cold/flu-like symptoms, and lack of sleep, I seem to be doing alright health-wise. The nausea is gone, to be replaced by near-normal hunger. I still don't eat much, but it's more than I ate before, so that's good. My extreme dizziness, and near-fainting have calmed down a lot.<br />
<br />
I just want to meet this tiny little person, already. BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com0tag:blogger.com,1999:blog-7719452176286774578.post-85564240171337527452012-11-14T13:50:00.000-07:002012-11-14T13:50:49.023-07:0019 Weeks, 1 DayI had my ultrasound today, and I measured at 19 weeks, 1 day. It's 17 weeks, 2 days since conception, and 18 weeks 5 days from my last menstrual cycle. I figure I'm due the first week-ish of April. I hate how there's no clearly defined, absolute rule for counting dates.<br />
<br />
I found out the sex of the baby today, and if you don't want to know, don't read the rest of this paragraph. I'm having a girl! With all the certainty she (the ultrasound technician) could give me, it's going to be a girl. Obviously at this point the accuracy of sexing a baby via ultrasound is not 100%, but she said she's pretty sure it's a girl!<br />
<br />
I've had some nausea off and on, and the heartburn/acid reflux issues at night seem to be less bad if I drink milk in the evening (or eat ice cream). <br />
<br />
It seems the only cravings I've had are sugar-heavy items. Like gummi bears, and slurpees, and chocolate, and cookies... Not anything specific though, just sweet.<br />
<br />
My uterus feels less heavy now, but my pelvis seems to be quite crowded. There's barely room for my bladder, and intestines to be where they're supposed to, which makes the constipation worse, and makes me have to pee... 5 times today, already (make that 6). <br />
<br />
I also have the same sneezy, runny nose, feels like a cold, with the flu-like body aches that I've had through the whole pregnancy so far. It's not nice.<br />
<br />
I'm sleeping 3-4 hours per night, and not having to get up and pee any more, which is nice.<br />
<br />
My left shoulder subluxed, probably a few days ago, and it just won't stay where it should. It's just so loose and floppy right now. Had a new dislocation! Dislocated my pelvis, front and center, with a holy-crap-pulled-muscle feeling more towards the left side. It was one of the ones where when it first goes, you have that terrifying thought that this is it-my life from now on is going to include a wheelchair. But it went back where it should be, and the pain went away after 2 days. It just made it impossible to stand up even close to straight, so I sat until bed time, and slept on my side.BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com0tag:blogger.com,1999:blog-7719452176286774578.post-42983856850579196102012-10-30T08:26:00.001-06:002012-10-30T08:34:45.061-06:00My 900 Pound UterusSeriously, that's what it feels like. It feels like I've got a mercury filled balloon where my uterus should be. A poorly suspended mercury filled balloon. (I was told at my last ultrasound that my uterus was in the proper position... But I was laying down at the time... Next ultrasound, I might ask the tech to check the position while I'm standing to make sure I'm just crazy, and not in imminent risk of prolapsing or something)<br />
<br />
Going up and down stairs, it feels like my uterus is SMASHING into all of my inside bits. If I sit down too hard, it feels like my uterus is trying to fall right out of me.<br />
<br />
Oh, and my bladder? Is about the size of a walnut now.<br />
<br />
And I can't sleep later that 4:00am. Can't. Last night I got about an hour of sleep. Then I had to pee, and once I was done, I couldn't fall back asleep.<br />
<br />
I'm really happy about FINALLY GETTING PREGNANT!!! But holy crap, I need some sleep.<br />
<br />
You know what would be cool, though? If other people could hear the clickety-clack of my ribs rubbing against each other every time I take a step. Seriously, I can kinda hear it, in a vibration-through-the-skeleton way, but it would be such pretty music if other people could hear it.<br />
<br />
Weird thing... My whole pregnancy, until last week, I did not twitch. I think I stopped twitching right after the prolotherapy injections, but I'm not 100% sure. Last week I started twitching again though. It might all be from the joint laxity, and muscle fatigue, as aside from hormones, that's the only thing that's gone through major changes recently.BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com4tag:blogger.com,1999:blog-7719452176286774578.post-84110784460102570742012-10-25T09:57:00.000-06:002012-10-25T09:57:04.444-06:00Most Exciting Medical News... And I Forgot To Tell You<strong>I sent this letter to Chris Eagle, President and CEO of Alberta Health Services in July:</strong><br />
<br />
<br />
I suffer from what is generally regarded as a rare genetic disorder; Ehlers-Danlos Syndrome Hypermobility Type (also known as EDS III, or HEDS). I am writing to you today to let you know that it is not nearly as rare as you think. The commonly quoted prevalence of HEDS is 1 in 5000 to 1 in 20,000 people afflicted. Doctors are now trying to make it known that HEDS is clinically indistinguishable from another connective tissue disorder, Benign Joint Hypermobility Syndrome (BJHS). Hypermobility is found, to some degree, in approximately 30% of the population world-wide.<br />
<br />
The commonly understood difference between HEDS and BJHS, is that one causes early-onset osteoarthritis, and numerous dislocations, which are painful (HEDS), while the other causes extreme joint flexibility, with little to no ill effects noticed such as in ballerinas, contortionists, circus performers, etc. (BJHS). The more research that is done, however, the more clear it becomes that BJHS and HEDS are opposite ends of the same spectrum, and that they should be treated as the same disorder, as more and more of these people are noticing the extreme pain and co-morbid diseases later on in life, and are having their diagnoses changed.<br />
<br />
HEDS causes severe pain. Not directly, but through recurrent dislocations, and subluxations of some or all of our joints. For example; my left hip dislocated, on average, five times every day for over a year, and my left shoulder has only had 2 blissful weeks out of the last 15 years where it hasn’t dislocated at least once per day (and I’m only 25 years old). HEDS also causes recurrent sprains, strains, and other various injuries due to the extreme laxity in our joints, and since we can never seem to catch a break between injuries they can take many months, if not years, to be considered “healed.”<br />
<br />
I have had the misfortune of injuring 3 major joints to the point where “normal” people would have surgery to repair them, but since I had been diagnosed with EDS, I was told that surgery is not an option. I am very thankful that the surgeons I saw were aware of the poor wound healing, and the poor outcome of surgery in EDSers, as I have heard of many patients who have had reconstructive surgeries before diagnosis, which have been repeated upwards of 30 (yes, thirty, it’s not a typo) times, as they didn’t work. I have heard several first-hand accounts of patients resorting to complete fusions of wrists, ankles, and shoulders to stop them from dislocating, while also severely limiting their ability to use said joints. The most beneficial surgeries I’ve heard of are tendon and ligament replacements, using cadaver tendons.<br />
<br />
Since surgery is only to be considered as a last resort, we have to make do with physiotherapy, bracing, and reduced activity, as the only ways to manage our condition. The problem with that is that since the disorder is classified as “rare” and doctors are taught in medical school that they “will never encounter someone with Ehlers-Danlos Syndrome” (a quote from the very rude gastroenterologist I had the misfortune of seeing ) nobody is properly trained in how to help us. When I sprained my shoulder –while washing dishes- I was referred for physiotherapy. I phoned several physiotherapists in Calgary, to see if any of them had treated anyone with EDS, and I was met with answers that were not the least bit comforting. Most of these professionals deal with very athletic people, as they are usually the ones to sprain their shoulders (quarterbacks, baseball pitchers, and professional swimmers). None of them had ever worked with EDS before, and most were not interested in researching the disorder. If I had gone through with physiotherapy, there is a very good chance that they could have injured me further, by treating me as an otherwise healthy person with an injury.<br />
<br />
The main reason I am writing to you today, is that I have found a treatment for HEDS. Through years of internet research, as well as talking to many, many other people with HEDS, I have managed to find Prolotherapy.<br />
<br />
“The basic mechanism of Prolotherapy is simple. What most people are surprised to find out is that the body heals by inflammation. In other words, we need inflammation to heal our bodies. It works because it actually stimulates an inflammatory reaction in the body. We inject Prolotherapy solutions into the affected ligaments, tendons, and/or joints, which leads to local inflammation in the injected area. The localized inflammation triggers a wound healing cascade, resulting in the deposition of new collagen, the material that ligaments and tendons are made of. New collagen shrinks as it matures. The shrinking collagen tightens the ligament that was injected and makes it stronger. Prolotherapy has the potential of being 100 percent effective at eliminating pain and sports injuries that are a result of ligament and/or tendon weakness.” (http://www.caringmedical.com/therapies/prolotherapy.asp)<br />
<br />
“Traditional Approaches to Treating Ehlers-Danlos Syndrome or Joint Hypermobility Syndrome: Although traditional medicine does not have a treatment for regenerating connective tissue and is therefore unable to heal Ehlers-Danlos Syndrome, several options have been suggested, including exercise to improve joint stability and strengthen muscle; self-management to protect joints from injury, reduce pain and conserve energy; and surgery to correct fractures and dislocated joints. The problem with any of these options is that they do little to strengthen the loose joints in the body and, thus, do not alleviate the chronic pain that people with Ehlers-Danlos Syndrome experience.” (http://www.caringmedical.com/condition_details/Ehlers-Danlos_Syndrome.htm)<br />
<br />
I want to let you know that this relatively inexpensive treatment could save hundreds of thousands of dollars spent on unnecessary, and usually ineffective surgeries, while also lowering patients dependency on pain medications, and giving them some semblance of normality. I mentioned that I’ve had 2 blissful weeks without dislocating my left shoulder, and it is because of the prolotherapy injections I received. After just one treatment I am already noticing significant pain reduction, and more functionality. <br />
<br />
“ I want to shout from the rooftops "Ehlers-Danlos sufferers! Get Prolotherapy!" Sure, it's unpleasant, and sure, it's lots of needles, and sure, your doctor may not think it's even worth sending you for a consult, because they have no idea what our lives are like. BUT... WHAT WE HAVE IS A CONNECTIVE TISSUE DISORDER, WHICH CAUSES OUR CONNECTIVE TISSUES TO STRETCH, AND BECOME LAX. PROLOTHERAPY CAUSES THE TISSUES TO TIGHTEN, AND BECOME STRONGER. Surgeries cause scar tissue, prolotherapy doesn't. Steroid injections may temporarily block pain, but they also cause joint degradation; prolotherapy causes some short-term pain, but actually causes tissues to grow better, stronger, and thicker, alleviating the pain. Physical therapy may strengthen muscles, and allow some people relief, but many physical therapists do not know enough about us not to hurt us in the process. Prolotherapy gives you your tendons and ligaments back, which in turn allows your muscles to do their own job, instead of doing double-duty, and being tense all the time. <br />
<br />
“More people need to know about this. More people need to be made aware. This is THE TREATMENT. This is our hope. This is the light in the darkness we've been searching for.” (http://b-u-b-b-l-e-girl.blogspot.ca/)<br />
<br />
It is at this point that I plead with you. PLEASE raise awareness about this disorder among doctors. All doctors, in every field should get a crash course in EDS, the signs to watch for, the simple Beighton score/Brighton criteria. Ehlers-Danlos Syndrome comes with many co-morbid conditions (approximately 75% have some form of dysautonomia), most of which have treatments. If we were properly diagnosed, we would have access to these treatments. <br />
<br />
Please, also, help displace the misinformation running rampant through the healthcare system. This is a degenerative disorder, and it does get progressively worse throughout a patient’s life. <br />
<br />
<br />
<br />
<strong>I received a reply from Alberta Health Services.</strong><br />
<strong><br /></strong>
<strong>Here are some excerpts:</strong><br />
<br />
“It is clear from reading your letter that you have thought about this matter a great deal and you are well informed on these subjects to a far greater extent than most people, including physicians.”<br />
<br />
“Knowledge of hypermobility-specific measures, such as the Brighton Criteria is not common-place in primary care, but would be part of the knowledge-base in rheumatology. Patients with issues of Hypermobility may often present to their family physicians. Often because of the musculoskeletal symptoms, Rheumatologists may be consulted for more advanced forms of the disorder.”<br />
<br />
“You have raised concerns about the general level of knowledge about Hypermobility syndromes and the amount of physician education in this area. While Alberta Health Services is not directly responsible for undergraduate or postgraduate medical education, we commit to you to pass on your concerns to those post-secondary institutions responsible for providing undergraduate medical education and post-graduate medical education in programs such as rheumatology and physical medicine.”<br />
<br />
“One particular part of your communication relates to the use of prolotherapy. I have consulted with two physicians in Alberta who are knowledgeable of prolotherapy, and one Rheumatologist – a sports medicine specialist with known national expertise in this subject. As you know, prolotherapy is not widely practiced, and it has particular usage, these days, in sports-related injuries, and is often used in the treatment of elite athletes. From what we understand, investigation of prolotherapy in broader musculoskeletal disorders perhaps requires more attention.”<br />
<br />
“This raises the question as to whether or not we should ask the Province to look more carefully at the broad field of prolotherapy and musculoskeletal disorders. We will do this as a consequence of the points you have raised and refer your letter to the Alberta Advisory Committee on Health Technologies. This may or may not lead to a provincial-level review of prolotherapy and possible recommendations as to where prolotherapy might fit in the treatment of musculoskeletal disorders. Of course, during this review, any sound evidence that is out there that points to the use of prolotherapy in Hypermobility syndromes will be given prime consideration.”<br />
<br />
“In summary, I thank you for your letter and for raising a number of points for us to consider. I will ensure to follow-up with the University of Calgary and the University of Alberta’s undergraduate and post-graduate medical education departments, and I will send a letter to the Alberta Advisory Committee on Health Technologies and raise the issue of the role of prolotherapy in musculoskeletal treatments. As and when appropriate, should I receive further information that bears on the contents and the issues in your letter, I will contact you again. In the meantime, thank-you for being an inquiring and thoughtful patient that helps us examine our processes and our approaches to care with the overall intent of making it better for those who suffer the affliction of disorders such as Ehlers-Danlos, or other variants of hypermobility.”<br />
<br />
BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com1tag:blogger.com,1999:blog-7719452176286774578.post-78428040813960628212012-10-23T11:40:00.000-06:002012-10-23T11:40:02.146-06:00So Broken...Yesterday totally sucked.<br />
<br />
I woke up with 4 dislocated ribs (at the spine) and they stayed wobbly and not-quite-right all day. This caused some wonderful muscle spasms throughout the day. After work, I decided to go grocery shopping, because we've been out of food for about 2 weeks. <br />
<br />
I got to Safeway, and parked in one of those wonderful handicapped stalls (because I finally am disabled ENOUGH to warrant one-at least temporarily), and hobbled to the front door to grab a shopping cart. I used the shopping cart as a walker, because my left hip has been feeling like there's a knife stuck into it since Saturday. I made the trip through the necessary aisles to get everything on my list. Then I went to the front to pay for everything.<br />
<br />
This is where everything fell apart. There were about 40 or 50 people in line to pay for groceries, and only ONE TILL OPEN. So I stood in line... For 35 minutes. Now, most of the time, this wouldn't be a huge deal for me, but as I said, hip, ribs and back spasms had been haunting me all day. After about 3 minutes in line, I had a white-knuckled grip on the shopping cart, and I was shaking visibly. After another few minutes, my back started spasming really hard, and I looked like I was having partial seizures. Then my chin started quivering... Preparing for the tears. <br />
<br />
By the time I got to the check-out, I was ready to lose consciousness from the pain in my back, and the low blood pressure. I was ready to abandon my shopping, and just go home... I felt defeated.<br />
<br />
I paid for the food, stumble-shuffled to the car, and cried all the way home. <br />
<br />
I used my absolute last ounce of energy to get the groceries into the house, and half-crawled up the 6 steps to my comfy chair.<br />
<br />
By the time I was done, I wasn't even hungry... At least not hungry enough to tackle those damned 6 stairs...BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com3tag:blogger.com,1999:blog-7719452176286774578.post-35357049226306534222012-10-10T10:22:00.000-06:002012-10-10T10:22:53.018-06:00My NewsSo, the reason I've had to stop Prolotherapy, and the reason all of my joints are extra floppy, and the reason my blood pressure has been super wonky is...<br />
<br />
I'm Pregnant!<br />
<br />
After 5 years of trying to make a baby with my hubby, we've finally done it!<br />
<br />
I am currently 14 weeks along, and the baby is due in early April. <br />
<br />
I've lost 20 pound since becoming pregnant, due to the lack of hunger, combined with all the wonderful nausea, and lack of sleep.<br />
<br />
And, holy crap, my boobs hurt. <br />
<br />
We've told only close family and a couple friends at this point, so to all my Facebook friends, please don't comment on Facebook, as we haven't gone "Facebook official" with the news yet. <br />
<br />
Right now I'm anxious, and worried, and wondering if I'm going to have a healthy baby. After all, there are many things that could go wrong still, and 2 different genetic connective tissue disorders to watch for.<br />
<br />
But the cute little monkey was doing headstands when I went for my ultrasound last week, and it was SO CUTE!BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com5tag:blogger.com,1999:blog-7719452176286774578.post-74349403527963393542012-09-10T13:59:00.000-06:002012-09-10T13:59:47.446-06:00A Bit of an UpdateSorry I've not posted in a while.<br />
<br />
The company I work for has undergone a change of management, and I have been doing what amounts to 2 full time jobs simultaneously. It's not fun.<br />
<br />
On top of this, for reasons I can't get into at the moment, I have had to stop Prolotherapy injections for the foreseeable future. So I'm in a crapload of pain in my everywhere... Again. As soon as I'm medically cleared, I will start them again.<br />
<br />
You wanna know something weird? After my wonderful 2 weeks of significantly fewer dislocations than I've had in over a decade (thanks to the Prolotherapy), once the tissues started to loosen up again, and I started to dislocate my "normal" amount of times again, the pain suddenly seemed so much MORE. It's as if my mini-vacation was enough for my body to forget what 24/7 HOLY CRAP PAIN was, and more importantly, forget how to deal with it.<br />
<br />
My wonderful insomnia is back with a vengeance. I'm getting about 2 hours sleep per night, spread out over 8 hours lying in bed... Ugh. Oh, and my blood pressure is totally wonky, and I've had about 10 "near-syncope" events in the last couple weeks. Those times where you have just enough warning that you're about to lose consciousness, that you can sit down quickly, or lay down, before you actually pass out.<br />
<br />
I'm trying to keep my fluid intake to a maximum, but I just can't seem to get enough into me to raise my blood pressure.<br />
<br />
That's all I've got for now. I'll try to update sooner next time.BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com2tag:blogger.com,1999:blog-7719452176286774578.post-3127827222811432722012-07-23T13:33:00.001-06:002012-07-23T13:33:36.311-06:00Love Hurts...I had sex on the weekend.<br />
<br />
Five times!<br />
<br />
It was really good sex, too... Until it was over, and I rolled over, and felt that I had somehow managed to dislocate SEVEN ribs. Seriously... Ow. So I have to be really careful about stairs (because any slightest bounce, and my boobs pull on my ribs). And I have no position that's comfortable to sleep in; my ribs are either being pulled apart (on my front or back) or they're being squished together (on either side). Coughing and laughing are also painful.<br />
<br />
But, I didn't dislocate my hips! Yay!<br />
<br />
And the only other injury sustained was a really bad foot cramp, and I had to manipulate the crap out of my foot before the tendon snapped back into place.<br />
<br />
As usual though, with these types of injuries, TOTALLY worth it!<br />
<br />
<br />BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com5tag:blogger.com,1999:blog-7719452176286774578.post-77617159130498215052012-07-13T13:45:00.001-06:002012-07-13T13:50:37.695-06:00Recovery, and PraiseI've had all of my most problematic joints injected. This includes my left shoulder, left scapula, 3 left ribs, entire spine, left and right SI joints, and both hips. This was done over the course of 4 separate 30 minute appointments. My next appointment, to have everything injected for the second time is on October 3rd, when I have booked a 2 hour appointment to have everything done in one go.<br />
<br />
There are 2 reasons for this. First, the two days of really tight, swollen, tendons and ligaments is quite painful. I would rather have the 2 days of pain done and over with, instead of having 2 days for each joint, for a total of 8 days in pain, like I've just had. Second, the immediate tightness causes things to pull on each other, like my shoulder pulling on my neck and back, which caused a great amount of discomfort. I don't want that to happen again.<br />
<br />
My Doctor was surprised that I needed to have injections into my scapula, at the bottom, where it connects to the muscle that connects to the spine. This was necessary, since when I bent forward, even with my shoulder being tightly bound to itself, it would still dislocate forward, because there was nothing holding it back. Now, when I bend forward, and let my arms dangle, they're the same length! My left one isn't 3 inches longer anymore! And it doesn't go *slip, thunk* anymore either.<br />
<br />
My pain levels in my shoulder have decreased significantly. And this is after only one treatment! My shoulder has only dislocated from being slept on since the injections, and even then, not nearly as bad as it used to.<br />
<br />
When I had my spine and neck done, there was a "war of the tissues" going on between the muscles wanting to pull my neck and shoulder toward each other, and the ligaments trying to pull my neck more upright. Because of that, I had a 2 day migraine, which made me feel pretty crappy, more sensitive to light, with the wonderful sensation of having forks in my eye sockets, and an ice pick to the back of my skull. It has since subsided.<br />
<br />
I want to shout from the rooftops "Ehlers-Danlos sufferers! Get Prolotherapy!" Sure, it's unpleasant, and sure, it's lots of needles, and sure, your doctor may not think it's even worth sending you for a consult, because they have no idea what our lives are like. BUT... <b><u>WHAT WE HAVE IS A CONNECTIVE TISSUE DISORDER, WHICH CAUSES OUR CONNECTIVE TISSUES TO STRETCH, AND BECOME LAX. PROLOTHERAPY CAUSES THE TISSUES TO TIGHTEN, AND BECOME STRONGER.</u></b> Surgeries cause scar tissue, prolotherapy doesn't. Steroid injections may temporarily block pain, but they also cause joint degradation; prolotherapy causes some short-term pain, but actually causes tissues to grow better, stronger, and thicker, alleviating the pain. Physical therapy may strengthen muscles, and allow some people relief, but many physical therapists do not know enough about us not to hurt us in the process. Prolotherapy gives you your tendons and ligaments back, which in turn allows your muscles to do their own job, instead of doing double-duty, and being tense all the time. <br />
<br />
More people need to know about this. More people need to be made aware. This is THE TREATMENT. This is our hope. This is the light in the darkness we've been searching for.<br />
<span style="background-color: white;"><br /></span><br />
<span style="background-color: white;">Is it a miracle? No. Will it solve everything that's wrong with us? No. But as far as our joints-that-are-hypermobile-to-the-point-of-constant-pain-and-dislocation issues go, this is what we've been waiting for.</span><br />
<span style="background-color: white;"><br /></span><br />
The silver lining is looking ever brighter. I am still waiting for an appointment with a cardiologist to have me tested for POTS. That seems to be the biggest issue I've got right now. The constant nausea, dizziness, and incredibly low blood pressure, and the exhaustion. Once I find treatment for those, I think I'll be able to <i>live </i>again.BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com2tag:blogger.com,1999:blog-7719452176286774578.post-3290317959098088442012-07-06T12:46:00.004-06:002012-07-06T12:46:59.325-06:00So Many Needles...Okay, so the whole waiting thing didn't work.<br />
<br />
Once I'd had the doctor stab my shoulder, after a couple of days I could feel that my shoulder was tight enough that it was pulling on other, looser, bits of my anatomy. So I called his office and booked 2 more appointments, for Tuesday, and Thursday this week. During those appointments, I had my entire spine done, as well as my left scapula, and 3 left ribs where they attach to the sternum. And my S.I. joints. I still need to have my hips done, and I'm on the cancellation list for the next available appointment.<br />
<br />
I had my neck and lumbar spine done yesterday, and today they are quite sore. The doctor bruised me at one injection point (left S.I.) but it's not causing any extra pain, it's just an ugly bruise. My neck is feeling very tight today, and I had problems finding a position to sleep in last night. But I am sitting straighter, and holding my head in a more natural position than I usually do. I usually crack my neck several times a day to relieve the pressure that I feel, which also allows me to maintain range of motion. Since the injections, that pressure has built and built, and I can't turn my head to the right, as it pulls on some very tender bits on the left side of my neck.<br />
<br />
Looking at the injection points on my spine, my mom exclaimed "holy crap your spine is crooked" as it seems to curve about an inch and half to the right, right before it meets my hips. This is a new curve that wasn't there the last time I had someone look at the curvature of my spine, and I'm assuming it's like that from all the limping I do onto my right leg, causing really asymmetrical pressure.<br />
<br />
My wonderfully stabby doctor has informed me that I'm responding well to the injections so far, and that I'm tolerating them better than he had expected. He's also surprised by my ability to spew out medical research, terminology, and "big words" like <i>proprioception </i>without getting tongue-tied. He seems to be quite impressed with my knowledge of how prolotherapy works on the body, and how those effects affect other things.<br />
<br />
It's nice to have a doctor that realizes I'm not like some people that Google medical-related things for a few minutes, and proclaim themselves to be educated. He can tell that I actually do know what I'm talking about, and he treats me with more respect than I've ever had from a doctor. He also explains things to me as -not quite an equal- but as though he were talking to someone whose opinions and knowledge were beneficial to him.<br />
<br />
So to sum up: I feel like crap, but I also -and more importantly- feel like I'm benefiting from the injections.BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com0tag:blogger.com,1999:blog-7719452176286774578.post-61449862307678280202012-06-21T15:00:00.000-06:002012-06-21T15:00:10.153-06:00Prolotherapy AppointmentI had my first round of prolotherapy injections into my left shoulder this morning.<br />
<br />
Turns out, all my fears about the local anesthetic were unfounded, as this one didn't cause searing pain, and amazingly offered some relief during the injection process - enough that it froze the skin, and some soft tissue, but the lovely *poke* into the bone wasn't comfy, and the fluids going in were unpleasant as hell. The doctor did listen to all of my concerns before the injections, and he answered all of my questions afterward. I think he might have been having an off day last time I saw him, because he was nothing but nice today.<br />
<br />
On my way to the appointment, my resting pain level was about a 6... So I wasn't feeling all that great to begin with. During the injections, the highest pain spike was a 9, but it only lasted 2-3 minutes, before settling down to an 8 for the rest of the injections. About 15-20 minutes after all the injections were done, all of the local anesthetic had worn off, and my shoulder pain was down to about a 7.<br />
<br />
We're now at 2 hours post-injections, and the resting pain is about a 6 again, but when I move it too much, or in certain directions, it'll spike to an 8 or so for a few minutes.<br />
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The next step is (for me) the hardest... Waiting...<br />
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Waiting to see if this offers any lasting effects...<br />
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Waiting to see if this makes me more functional...<br />
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Waiting to see if this will decrease my pain...<br />
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Waiting for all of that before I can start on any other joint...<br />
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Apparently I did well though. He expected me to cry or something from the needles, and the pressure of all the fluids. But I didn't, because it didn't really hurt any more than my "normal" shoulder pain lately. I did wince a few times, and I think I Grrrrr'd once or twice, but that's about it.<br />
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I'll try to update frequently-ish, so you can all see the healing/recovery/regeneration process.BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com4tag:blogger.com,1999:blog-7719452176286774578.post-1746136289476604462012-06-15T11:25:00.001-06:002012-06-15T14:37:06.847-06:00G.I. AppointmentI finally had my G.I. appointment on Tuesday. <br />
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Diagnosis: IBS.<br />
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Okay, fine, I looked at the symptoms of IBS, and yes, I have many of them. But, I also have symptoms of other things, like delayed gastric emptying, and gastroparesis, as well as extreme problems with choking on everything I put in my mouth unless I'm REALLY concentrating on it.<br />
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The G.I. doc listened to my concerns as far as "otherwise healthy person with some digestion problems," but he told me flat out that "Ehlers Danlos Syndrome has no effect on the digestive tract." When I attempted to inform him that, yes, in fact, EDS DOES have an effect on the digestive tract, he completely ignored me.<br />
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He also said that EDS is such a rare disorder that even though I'm the first person he's ever seen with it, I'm sure to be the last, and because of that he wasn't really interested in learning any more about it; because, you see, he remembers it from med school... The whole paragraph they taught him how many years ago? He's in his late forties or fifties, and the information he learned is SO out of date as to be practically useless to the current body of knowledge.<br />
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I was so furious with him at the end of the appointment, that I must have had a burst of adrenaline, because I had angry, restless energy I needed to expel. So I went home, and started packing up some boxes (because we're in the middle of moving) and I moved them myself to the new house. All the boxes I packed - five in total - were packed as full as I could manage (contents of the fridge and freezer, as well as our canned goods, and non-perishable foods), and I had to take them down a flight of stairs to my car, then up a flight of stairs at the new house. By the time I got all the boxes inside, my adrenaline wore off, and my blood pressure tanked. So I spent 15 minutes laying on the living room floor, watching the ceiling dance, and drinking a bottle of water.<br />
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I've also got a really bad cold, which is preventing me from taking the medication I take to increase my appetite, and decrease my pain. Because of this, I'm too nauseous from the pain to eat anything, and I've lost 20 pounds... in a week and a half.<br />
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To top it all off, everyone at work has the same cold, and my co-worker (the one whose job is similar enough to mine that we share each others work-load) has been off most of the week, putting a lot of extra pressure on me to get things done. This, right now, is the first time I've had all week where I haven't had at least 5 files on my desk with urgent problems to address, as well as a phone attached to my ear, dealing with another file. She isn't sicker than anyone else here, and it really pisses me off that she feels she can just leave me hanging like that, knowing full well that I'm not the healthiest person to begin with. (Sorry, but I really had to rant about that, and now that I have, I feel better)<br />
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Next week is my first Prolotherapy appointment, and I'm really hoping I'll be able to let him know that I don't want to have local anaesthetics injected into my body, without having to resort to the "mom voice." I'm going to try once again to explain the part about paradoxical reactions to drugs. Not just that they are less effective, or ineffective, but that they have a tendency to cause the exact opposite reaction in some people (including myself) with EDS. I'm going to suggest an alternative, if he insists that the solution will be too strong, and that it needs to be "cut" with something. Because, really, it's my body, and I don't want local anaesthetics in it. Simple as that.BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com1tag:blogger.com,1999:blog-7719452176286774578.post-16284659415675114092012-05-25T10:52:00.000-06:002012-05-25T10:52:24.562-06:00Vacation, and Recovery...I went on vacation for a week. All the way to Vancouver. And it was AWESOME!<br />
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Firstly, on the drive there, we'd stop the car every hour or so to get out and stretch, so we wouldn't be too stiff when we got there. About halfway there, I stretched my hips and back to the point where for the first time in FIFTEEN YEARS I was able to touch my toes. I know that's one of the nine possible points on the Beighton scale, and I used to be able to do it easily, but after years of "pain avoidance" and tight muscles, I lost the flexibility in my lower back. Apparently 5 minutes of stretching repeated throughout the day is all I needed to touch my toes... Yay me!<br />
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Next, there was the concert. Also AWESOME!!! I saw Rammstein! And they blew up EVERYTHING. Seriously, fire, fire everywhere, and I'm glad our seats were as far back as they were, or else I don't think I could have handled the heat.<br />
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After that, there was walking. Lots of walking. I walked until I got a blister, then I walked some more, and kept walking until my hip suddenly decided it'd had enough... Then it was bed rest for the next day and a half, and walking with my cane on the one trip we had to take.<br />
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After that, we went to Osoyoos, and attempted a swim in the lake... Which was stupid, because it's way too early in the season, and the water is incredibly frigid... But our hotel had a pool, and we took full advantage of it. Which brings up an odd point... During everyday activities, my left shoulder is mostly useless, and my right shoulder is mostly fine. In water, my right shoulder is almost useless, and my left is mostly fine... I found it odd... Swimming around, and it's the pain in my right shoulder which makes me stop.<br />
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Through all of this, I found that being at sea level, with all the extra oxygen makes it so much easier for me to breathe while I'm exerting myself (and when I'm not). I didn't have any problems catching my breath walking up hills, or over long distances, like I usually do. And something else about Vancouver, whether it's the weather, or being at sea level, or the humidity, my pain levels were so low. Practically non-existent. And when things did hurt, they healed a lot faster too. The hip pain from over-exertion took a day and a half to heal, and I've had similar injuries before which have taken weeks to even start to feel better.<br />
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Now on to the recovery portion... Made it back to Calgary in one piece, but I fell asleep in the car, and really tweaked my neck. It's been six full days of agonizing neck pain, with really stiff muscles. And my left shoulder is seriously annoying the crap out of me right now. Oh, and inexplicably, my twitching and falling have made a comeback. <br />
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And the best part? We're moving over the next couple of weeks.BubbleGirlhttp://www.blogger.com/profile/00932935674980101062noreply@blogger.com4