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September 26th, 2006

01:34 pm - Healing
It's been a long time since I've written.

Life's been eventful. I went into a wheelchair, and God brought me out of it. That was last November. Since then I've hauled myself around on a cane, and taken dilaudid (sometimes lots) to get by. But God is good.

Last weekend something so incredible happened it's hard to even describe ... but I can't properly call this, "EDS Living" any more. I can only point to my main blog post, Dancing for Jesus (yes, I really did dance!):


Praise the Lord!

Check over there at kathisharpe.wordpress.com for further updates!
Current Mood: rejuvenatedrejuvenated

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August 8th, 2005

08:15 pm
At this point, I don't know what to do.

I know some folks have been reading all along, and some people'll come over from the forum to read... so I'll do it like this:

Without rehashing my last six or eight months overmuch - we'll leave it at "I had a major downhill spiral" with my health of "unknown origin". Until the last two months or so, we'd all been chalking it up to my joints further deteriorating, really. Then the last couple of months I'd been having symptoms that were truly *frightening* - ranging from memory loss and communication difficulties to falling down and neurological symptoms. They'd gotten rather extreme, in fact. A couple weeks ago I ended up at the doc's office over it. He was sending me to a neurologist's, but before I could get there, I'd fallen twice and scrambled my brains. Things were looking pretty bad, so they admitted me to the hospital.

While I was there, firmly tethered to solid ground via an IV cable, the somber-faced doctors poked, prodded, subjected me to all sorts of drugs, radiation, magnetization, and threatened me with catheritization and worse. (I felt like threatening them... believe me.

They diagnosed me with everything from MS to adrenal insufficiency to thyroid dysfunction (they did get that right - partly) to yellow fever to rabies. I haven't seen the bill yet but I'm betting it'll top $75K to the insurance company.

Guess what the one thing that seemingly wasn't done while I was in the hospital?

Between the hospitalist, two neurologists, and an internist - it would seem no one checked the medications I was taking to see ... hmmm.
VERY dizzy?
Numbness, tingling?
Trouble walking, falling down, ataxia?
Mind-shattering fatigue?
Bladder, bowel trouble?
Communication problems forgetfulness memory difficulty trouble writing typing etc?
symptom after symptom... side effect after side effect.

I am rejoicing and praising God for two reasons - first of all, because now that I'm totally off this medication, the SIDE EFFECTS are slowly-but-surely going away (a friend who is a doctor and prescribes it often says that this happens to people rarely, and that when it does, it takes several weeks to recover)

Secondly, God used this mess in a Romans 8:28 sort of way - there in that hospital bed I became so close to Him... it's so precious and I would not change that for anything. :D

Yet I am so angry that between four doctors (actually it's more like seven - if I add one outpatient doc plus two ER docs) no one seemed to have a CLUE, no one looked at this as a possibility, no one said, "hey wait a sec. This list of side effects looks awfully like what's going on here. Let's talk about this before we do all of these tests."

I brought this up to a doctor in the practice of the paindoc who prescribed me the medication (Mandy, the doc who wrote the original scrip, is on vacation). At first, he was like .... "that medicine can't do that..." but as I went on describing the symptoms to him, it was obvious he was putting things together because he eventually began nodding his head and he agreed that it must have been the drug.

--> NOTE: I don't consider the side effect misinterpretation to be my paindoc's fault, exactly. I should have done a better job communicating to her what was happening, rather than chalking it up as neuro symptoms. If I'd been more specific to her, this actually might not have happened. :(

More from me later - this post isn't finished yet. :sighs:

Oh, by the way - if you visit cymbalta.com, you won't find most of what I'm talking about in the fluffy "patient information" - read what the doctors are supposed to read, though. PDF File on Cymbalta (from the Cymbalta Website). Give it a few minutes to load.

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July 25th, 2005

03:23 pm - Wow.
Thanks for all the positive, inspiring, up-beat and encouraging notes, everyone! It really makes my day when someone lets me know, "Hey, been there - you'll get through it" or "I'm praying for you".

The internet gets blamed for so much *blick* (often rightly!), I count myself privileged to see it used for good, and even GREAT, things.
Current Mood: chipperchipper

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July 16th, 2005

01:05 pm - well.
It's hard, to not know what's going on.

I fell yesterday. Fortunately not hard. I'm a fast learner, I try to keep either a wall or furniture object nearby when I'm up and walking. So I was passing the end of the bed, and started to feel that dizziness, and tried to sit down. The covers slipped, and down I went in a puddle of down comforter. DD and Lucy (dog) were trying not to show how upset they were. DD doesn't know yet that we suspect MS, no sense in upsetting her; but on the other hand I might HAVE to tell the kids because it's starting to really show that something bad-beyond-normal is happening.

Anyway, I stayed down for a while, and when the dizzies went, I tried to get up. No legs. Just like last night. I could move my ankles and toes fine. When I tried to move my knees, they wouldn't exactly go where I wanted, but they tried to. No cooperation from the hips. DD tried to pick me up, and Lucy tried to bolster me, but no dice. Ken wasn't there. He tried to blame it on the medicine. :::foul look:::

After a few more minutes, I pulled myself by my arms (OUCH) up onto the bed, with Lucy acting as a grab-bar by the collar, and DD pushing on my legs. I finally got up there and collapsed. She pretended like nothing was wrong. Poor girl. :( Lucy, of course, got lots of treats.

I'm sending DD to her friends to spend the night, to get her away and let her de-stress a bit.

I'm going to have to hang the cell phone around my neck, I guess. What if that happened and I was alone?

RATHER afraid of falling and hitting my head, at this point. We're in the process of evaluating some things; I'm going to have the kids re-arrange the living room for better access thru with the wheelchair. I wish we could get a smaller bed. Then I could access the master bathroom.

If I do have MS, we'll have an awful lot to look at, as far as sorting our lives so that our lives will remain as "normal" and productive as possible.

If I don't, I am not sure I want to contemplate what could possibly be bringing on these symptoms. I keep joking that "maybe I have the flu" or "perhaps I have a vitamin y deficiency" ... but I know that's just not true.

A good friend of mine who is called by God to be an exhorter mentioned to me that she has the sense that I am a lot like Paul. I have an apostolic calling, and right now I am writing from within a prison (my own body).

I wish I had the passion of Paul... the endurance... the faith. Lord, I believe - no doubt about that! Help my unbelief!

I was writing this morning after my Bible study and prayer time that I feel very ... passionless right now. Medically speaking, that's from the level of pain I've been in, the huge quantities of narcotics I've been taking, and some of the complications I'm having. But spiritually speaking, my response to this latest round of difficulty has not been good. While I *have* been "spending time with God" every day, and feeling rather proud about it, it's been dry, perfunctory even; and then I go on to the next thing I have to do with an equal level of passion. I go from thing to thing(sometimes "doing" and sometimes just looking at, deciding it's too much, and going on to the next - all day long!) and then eventually I go to bed. I'm very ... withdrawn. And really, this has been creeping up on me for months.

Most of the time, I'm "ok" with the fact that I have pain. I don't like it but I live with it. I don't worry that I'm going to die, or anything weird like that. The type of EDS I have is a royal pain in the backside and most everywhere else, but that's it. But MS... that sort of gets your attention. It *can* kill you, and it makes life an unpredictable chaotic struggle up until then.

I guess in one way it goes back to the question I get asked all the time about my EDS - "How do you handle living like that?" --- well, it's normal for me. I guess for people with MS, it becomes their version of normal, and they deal with it. For the Christian, they don't even deal with it alone - God's on their side. I have to trust that if I DO have MS, God's not going to let me down. He's going to work that out, too, for His glory and for my good.

I have to recover my passion. My vitality. My heart for Christ. I need to be able to rise up and worship again, even if it's seated in my chair and my arms are just too heavy to raise and I'm doped to delerium.

Lord, grant me recovery... of my heart.
Current Mood: determineddetermined

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July 14th, 2005

08:46 am - Oh My.
This is the story I've told four of my best friends, two doctors, my husband, and God this week. Now I'm going to tell it here. Then I'm done for a while. :(

It began, I think, back in 2002 when I had that seizure. Shortly after that, we began that I was "losing my words" - during conversations, I'd forget what something was called, or I'd lose track of the conversation. Sometimes I'd type something wrong - like a few seconds ago, I typed "converstations".

I've never had another seizure, but that problem has gradually grown worse, bit by bit. It got to the point of frustration, so I went to see the neuro I went to after the seizure. He found out that I was taking topomax for depression/pain, and recommended I stop - apparently that drug has similar side effects. I stopped it for about 3 weeks, and during that time I took no medication at all. Because the pain and depression worsened and I noticed no change in the "words" problem, I simply went back on it. Then again, a few months ago, my paindoc put me on cymbalta. Once I was stable, I came off the topomax w/her permission. Although the cymbalta had helped my pain somewhat, when I came off the topomax it worsened. So - back on it I went after more than a month off. During that time, my words problem was the same.

About a week after that, a couple of strange things happened all at once.

First, it started raining. Then, the remnants of hurricane/TS Dennis came - and stayed. And are still here. Tropical weather makes me hurt badly enough that I could scream

Second, in the midst of all that pain, my words got far, far worse. Suddenly started losing my way on familiar streets, forgetting my phone #, forgetting how to spell common words. Like huge. This morning I spelled it HUJE. :::bonks head:::

Third, I got really wobbly. Not because my hips and knees hurt. This was weirder than that. It was like I lost my place in space. I nearly crashed through the bedroom window. Even sitting my head feels like a balloon. Also, I am so sleepy I've nearly fallen asleep on the road, but I can't sleep. I wake up early, and I'm not particularly tired at night - not really an insomniac. Just not tired then. But at the times when I AM tired, I am literally so tired that my vision doubles, triples, quadruples.

I also (this is a little embarrassing) have constipation, and a hard time getting going, when I have to urinate. Or it just stops, mid-way through. Feels like I'm done, when I'm not.

AND - and, and. :( I have days where my feet ITCH to where I want to chew the skin off them. (and hey because I have EDS, I can reach 'em to chew it) Right after the thumb surgery, the anesthesia guy warned me that I'd have odd feelings for a day or three in that left arm. A couple weeks later when I saw OT, I asked if it was normal to have feelings of cold water running down BOTH arms (and both are, of course, dry and warm).

Today, both of my heels feel like they are alseep. I also have little spots in my hand that are not exactly "numb" but aren't exactly "feeling"; they almost feel like my feet, but not quite as tingly either.

So -- I talked to Jules about this the other day. Then Joy. Both said, "And your neuro appointment is when?" :sigh: Talked to Cat who said, "Don't MESS with it." Mentioned to my pain doc this morning that I was going to the family doc today, and described the symptoms in much less detail than above, and she said, "neurologist, not family doc." I said no, familydoc - there's things to rule out first. NO, Neuro. NO, Familydoc. NO, NEURO. We went back and forth. ;) In the end, the family doc confirmed I was right, there are blood/urine tests that the neuro would have just sent me back to him, to do, before he would see me - I'd have wasted the office visit.

But he told me two things. The first is that everyone's instincts are right - while there's some things that the blood/urine tests will rule out, these are the hallmark symptoms of MS. :::boggles::: The second is that if I'm having problems urinating, I should go to a urologist and get some sort of dialation and probably a catheter done. I said... welllllllll.... it all still comes out, eventually......

God and I had a long, long talk this morning. Ken's car is still in pieces (waiting for a part to fix the brakes), so I'm having to run him back and forth. On the way home, I treated myself to a venti coffee (nine sugars and half-and-half) at Starbucks, and me-n-God had a rap session about What is This?. Basically, it went like this.

"Ok, Lord. There's weird stuff going on. I know, you're used to hearing me say that - I live in a body with EDS, you've given me Bobby to raise, I live in a house with five cats, and you made EW my ministry. But I mean, REALLY weird. I have suspicions, my friends have suspicions, the docs have suspicions... but YOU are the only One how has the truth. So I ask, Lord, that You would do one of two things, according to Your supreme will: either heal these symptoms completely, or reveal their cause and how I should respond to them quickly. In either case, Father, I ask that Your hand be upon me, that the shalom of God would be upon my household, especially upon Ken, and that You would supply me with the grace to be able to show your glory to the world through what is happening in my body."

As I prayed, a sense of peace I haven't yet had in this two weeks came over me - Praise God! :)
Current Mood: sleepysleepy

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July 12th, 2005

07:55 am - woke up this morning
I woke up at about 4:45. Sleep eludes me, it seems. I went to the bathroom, then dozed back off until the alarm went off. I've been working with Lucy to help me get up, if I don't notice the alarm because I'm too medicated - but she seems to sense that I need REST and I think she wrestles with herself over this! She's such a sensitive dog!! But she came and nosed me gently and whined and stared at me until I got up to shut it off. Reset it until 6:30, then I got up for good. Every time I got up, I needed my cane because my legs just plain aren't working - just like last night.

Wish I knew what was going on :( It's like from the hips up, I work, and from the hips down, I'm confused - they've forgotten how to move together correctly.

Pain this morning is about a D- ... it's a little bit better than last night. Not a lot, but a little. I'll take any improvement I can get.

I've started sorting through all of my cookbooks and memorized recipes. I'm getting rid of all of the cookbook clutter, and moving them out to storage. I can't reach them down for myself, anyway. I'm copying out the recipes I actually USE and am capable of cooking (not too much time, effort in making or cleanup, or expense - my family likes - or my kids can cook). One of my criteria for "main meals" is that it either makes abundant leftovers, like a roast, or that I can easily double, triple, or quadruple it. Ideally, I want to be able to take the "raw" recipe and dump the ingredients into four places: 1 being the pot it's being cooked in, and 3 gallon size zip-lock bags. Four meals made. When I want to eat that meal again, it's already prepared, right down to the spices. Just take it out, defrost, add water/milk/whatever and cook. Most of the meals are slow-cooker recipes, which really suit our lifestyle. Doing our meals this way will save me an incredible amount of effort - and having everything already in the freezer, already made will save so much time, effort, and MONEY (eating out) ... it's going to be incredible. :)

I also am working on a "household notebook" - I have read that people who are disabled/have chronic pain/brain fog function much better with everything written down to the most minute detail. So I now have a daily schedule, to-do list, daily devotions, homeschool stuff, list of things to look up on google, ebay lists, menu plans, important information... when I'm done, I'm going to upload it to the web and perhaps market it... we'll see!

And now my schedule says I've got to do something else... so... away I go! Fortunately I don't need to get up on my feet to do it!
Current Mood: contemplativecontemplative

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July 11th, 2005

05:31 pm - Tropical Weather
It's tempting to move to Aridzona or somewhere else that it never rains. We had the remnants of "Cindy" last week, and today we have bands from ex-hurricane Dennis coming across. According to Mr. Weatherman it's going to rain/thunderstorm ALL WEEK.

I have been taking morphine daily now for over a week. It's actually Avinza, a long-acting 1-dose per day form of the drug. It helps considerably, but it robs me of my independence. I'm unable to drive, and also to really think and process properly. I can either take 30 or 60 mg. If I take only one, I still have a good deal of pain. When I take two, I don't quite trust that I should be left alone - I'm a bit wobbly.

I see Mandy at the pain clinic on Wednesday; hopefully she can prescribe me something better. Fentanyl comes to mind. Never been on it but I'm told that it's a good drug. Another option might be short-acting morphine - that way I can manage the pain versus when I'm going to need to drive, and not take unneeded medication on days that I'm *not* in pain.

I think I'm also going to go and see my family doctor, I'm having some troubling symptoms. I had a talk with Jules yesterday, and Joy today about them (and Joy would know), and she's urging me to inquire. I'm going to wait a few days to see if things change - and then go, I guess.

The GOOD thing about all of this pain is that at least I have the wheelchair now! When I go out, I can get around! Six 1/2 miles an hour, and I can actually do donuts in the thing!! Can you say, "Zoom Zoom!"?


More from me later.

I'm coming up with a new way to rate pain, because the 1-10 way really doesn't work. Today I'd call myself a 10, but obviously if someone took a razor blade and scraped off my skin and rubbed salt in the cuts, I would hurt worse. Or if a bus ran over my foot...

A being great, B being good, C being ehhhh, D being bad, F being in bed. X is sick with an illness, Y is injured by EDS, Z is injured by a "hit by a bus" sort of injury.

Then I will add + and ++, - and --. With me?

So today's pain scale is a D--. In other words, I ache all over, I can hardly walk, my neck won't move, and even my toes are screaming.
Current Mood: soresore

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April 28th, 2005

04:50 pm - Thumb update
Well, the thumb is doing pretty well. Praise God!

They glued, rather than stitched, the incision. I highly recommend this for people with EDS... it's a very nice looking scar. No hints of coming apart at the seams. In fact, the spots where the pins were are more evident than the scar itself.

The scar is perhaps 3/4" long. Not bad. :)

I'd guessed before getting the cast off that my wrist would be floppy from having been in a cast so long. WOW was it floppy! Also, at first I could not move the tip of my thumb. Now I have about half the range of motion I should. I can do many things with my hand that I couldn't before the surgery!

It's not a surgery I would say to people, "Go and choose to do this". However, if you're faced with severe pain from arthritis or thumbs that plain slide out of joint and you're not able to use your hand... I do recommend that you consider it.

Current Mood: chipperchipper

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March 18th, 2005

08:35 am - Cymbalta and my thumb
Been a while since an entry.

The neurontin was a dismal failure. As soon as PMS hit, I knew I couldn't handle the stuff. The urge to run people off the road or re-create the texas chainsaw massacre was too great. Plus I was forgetting my own name a bit too often, leaving hte keys in the car, getting lost in familiar neighborhoods... thought I was losing my mind!

Doc is trying me on cymbalta next.

Had my thumb operated on. Fused at the middle joint due to massive deterioration. I think it will be good, Dr. Koman is excellent. However, Baptist Hospital's treatment of me left a lot to be desired. Including outright abuse from a nurse. I *think* patient relations will address it, but that remains to be seen. Hopefully we won't need to drag it through courts, the prospects of that are immensely dreary. Note: I'm talking about "she actually injured me" ... ::sighs:: Once I have her last name, I'm making a complaint to the nursing board down in Raleigh, too. I thought about pressing criminal charges, but I have the sense that it'll be handled from within.

Fortunately although it was a bad moment, a quick-thinking nurse's aide prevented it from being worse.

Another annoyance about the hospital: In the OR prep, I told them, "You can't start that IV down there by my wrist, it'll blow." The nurse said, "oh, sure, we can... it'll be FINE."

Um... no, you can't. I know what I'm talking about. Sure enough, 30 seconds later, my arm swelled up like a balloon. Two weeks later I still have a green, blue, and yellow arm.

Why is it that nurses can't listen to EDS patients? She absolutely refused to believe me, putting me at risk.

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February 24th, 2005

08:46 am - Sighs and cries
Finally got in to the pain clinic.

The doctors there are very nice. I like them a lot.

Got put on neurontin.... which I asked to try. Works GREAT on my pain. But it turned me into the queen bitch, and I get lost on familiar streets and parking garages. So the other day, the doc started decreasing my dose... but I'm asking today to come off it altogether because I just can't handle it.

I guess cymbalta is probably my next step.

VERY unhappy about this development.
Current Mood: crushedcrushed

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January 23rd, 2005

07:35 am - The most helpful tip I know
I haven't posted tips in a while, so I thought I'd do one:

Do not tear open plastic bags (frozen veggies, cereal, chips, toys, etc.) with your hands. Keep a pair of scizzors handy for this purpose (tie them to something in the kitchen with a 3' cord, if your kids keep stealing them or you're prone to wandering off...)

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January 22nd, 2005

08:27 am - a GREAT site

Found this yesterday. Fantastic!

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January 17th, 2005

08:35 am - Thumb Fusions

Dr. K wants to fuse my thumb. He says that it looks like the cartilage has died, which would certainly explain my pain level and also my inability to pinch.

I need to do some research on this, and also on the surgery. I don't want it, but

a) I can't live in that stupid brace forever (not to mention that hand therapy will NOT follow my instructions to make the blasted thing RIGHT for an EDS patient)

b) I'm having pain

c) I'm not able to use my left hand for much when the thumb's involved in the motion.

This morning I tried to test it with something very easy - putting toothpaste on the tube - errrrr... no. Couldn't even get a pea-sized bit of paste out.

On another note, I saw another doc regarding my rib. He gave me a CT scan, and although the pain is at the second rib (including if you push in there), there's no injury there. There is a current/healing/healed fracture (they couldn't tell) at the FOURTH rib. He said he wasn't sure why it would cause me pain, and my immediate thought is that a nerve has to go up through there. I experimented last night with poking along the fourth, and think I've found the break - it dips in, and there's a spot that just feels "wrong" - and when I poke it, it doesn't hurt too badly there - but the spot at R2 kicks up a fuss. Weird.

So - he's sending me to the pain clinic. They might be able to get me sorted.

For right now, I just keep praying. God's got it all in control. :)

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December 16th, 2004

04:57 pm - You can decoupage a cast!
I've got a nice green cast over my dislocated but healing thumb. Not fun. Boring.

It takes two people (you need a third hand). Cut out your shapes (stick to the simple). I used a candycane and a snowman. Get a LOT of glue on the back - more than you'd usually use - and have your helper hold down the first edge of it on the cast. Now frantically dab more glue over the surface with a brush, and smooth the whole thing down with your free and AND the brush. You've got time to work, which makes things a little difficult because it'll want to peel up... but you can do it! Once it's adhered, let it dry. Then you can put another coat of glue over it, and then a coat of triple-thick shellac over that! Voila! A fancy cast! All dressed up for Christmas!

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December 14th, 2004

04:21 pm - Honest Questions
Honest questions are always good. They lead to understanding. They have to be asked by honest people in appropriate venues.

I can appreciate that sometimes that's hard, especially if you've been hurt before. If that's the case, and hiding is needed, perhaps it's best to create a yahoo account, and email me from there... that allows you to speak your piece, but keeps your personal information a secret still. I don't mind that.

We're not going to agree on everything, P... but... on some of what you've had to say in a certain place... you and your friend D are right on. Couldn't agree more. Especially with regards to what you've said about children. :nods:

But what will you do about it?

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November 10th, 2004


Don't use 'em.

We had trouble with them years ago, when Ken got a bipap machine. I should've known :::rolls eyes:::

They told me back when I first saw them that THEY would take care of getting the prescription from my doctor, now that THEY knew what I needed.

I also got a call well over a week ago from the insurance lady over there, wanting to know my SSN and Ken's birthday (the first of which is not necessary, the second of which, their guy already had). I called her back immediately, did not reach her, left a message - she didn't get back to me until today.

She told me that it wasn't THEIR problem to get the prescription - it was mine - didn't I have a letter explaining the procedure to me? Errrr... no. Jack never gave me a letter. Letter? Procedure? What letter? There's a procedure?

No, she said, I have to call and get my doctor, who's wanting to be rather specific, to write a prescription for a generic power chair and cushion. Well that's not what my doctor wanted to do - that's why he sent me to the wheelchair clinic to be evaluated by these fools - he wanted to write it for a specific chair and a specific cushion. That avoids all sorts of trouble with the insurance company.

And Jack told me that he'd get a request to Dr. Koman for it... but no... Tracy says "We can't do that"

I told her that they ought to just give me the chair then... Then I told her that it was fine, really, I'd just have another company get me the chair. And I called Advance, who's given my family excellent service for years and years...

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October 23rd, 2004

08:53 am - Well, we have one on order!
Invacare Storm Series. Not a bad chair. It's much quieter than the Quickie. Smoother manuevering.
Current Mood: goodgood

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October 18th, 2004

08:39 am - Thanks :)
Thanks to the folks who've written... either as comments, or just dropping email... I've gotten a lot of supportive notes lately, and that means a lot. God bless you all!
Current Mood: jubilantjubilant

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08:22 am - Well, I go tomorrow
I go tomorrow to the eval for the wheelchair.

Ken's been in Russia... so he knew I was going to ask Dr. Koman about it, but I had to fill him in on the details when he got home. When I told him, he was like... ohhhhhhhh. OK. So I don't know what he REALLY thinks about it. Other than I think he's really afraid that I'll end up like Mark and Jeff, which is a totally irrational fear since they have MD and I don't, and nothing on me is going to end up paralyzed. I can't blame him for being fearful, though... there are a lot of unknowns, and he loves me. I have such a good husband :)

Sooooo. I don't know what's going to happen tomorrow. I hope they're not going to try and make me get one of those stupid scooters. I don't want a stupid scooter. I want a standard wheelchair, probably a Quickie like I had before.

I probably should cruise around the net today, looking at what's available... I bet that a lot has changed in ten years. (For those who don't know I was in a chair a long time ago, for a couple years, when I dislocated both my hips. That was temporary. This... well...
Current Mood: peacefuljoyful!

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October 15th, 2004

04:19 pm - Wheelchair approved!!
Well, I went to see Dr. Koman. He kind of shocked me. I asked for the wheelchair and got it with no argument. I half expected him to say, "Well, let's try this, this, and this first" - he is, after all, a surgeon - but instead Susan appeared a moment later with a prescription.

I have an appt. on Tuesday to see the wheelchair clinic about it.

I need to call and find out when my medicare goes into effect... I might have to wait to actually GET it until then. Plus I'm going to have issues with a lift for the truck... but I'm just going to have to trust God to provide!!
Current Mood: awakeAHA!

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September 20th, 2004

11:09 am - wheelchair
Well, I called this morning and learned that I've got an appointment on 10/6... not too far away... so I'm waiting to talk to Dr. Koman until then.

I just took Lucy on a walk up to the road and back - not far, not even 1/8 of a mile... and I'm now so sore that I'd like a codeine.

So much for exercise doing me good.

Current Mood: crankycranky

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September 18th, 2004

08:34 am - Yesterday....
yesterday was a long day. Spoons!

Sherra had aquired tickets for us all to go to Charlotte to a rally for President Bush... on the same day that the remnants of Hurricane Ivan was going through.


Not Sherra's fault, nor the President's, nor his schedulers... who could have forseen this mess?

The day started early. I wasn't doing too badly in spite of the abysmal weather... so I figured all would be well. Ashley and Sherra arrived, and we headed out.

We'd not gotten far down 85 before I realized that things were NOT good. It began to rain... and then rain more... and then rain even more. There were times that I'm not sure Ken could see the road!! Traffic in Charlotte was characteristically bad, too... but not as bad as normal, I guess some people stayed home due to the weather.

We went and had lunch first... Wendy's... I took a chance on the french fries not being contaminated with gluten. I ought not to do that. I've got blisters, mouth sores, and my stomach's distinctly unfriendly.

We got to our destination, took one of the last handicapped spots, and got into line. Yikes. We were in line for almost two hours! Later, I found out that if we'd but asked, we could have been moved to the front, sent through security, and safely ensconced in seats... but since I saw other disabled people standing in line it just never occurred to me TO ask. Apparently many of the folks that had noticable disabilities (such as using a white cane, or in a wheelchair) were directed inside by event organizers... but since Ashley (who has MD but is able to walk short distances), Kayti and I look pretty normal no one could tell and we stood. Next time I'll ask.

Security was the one real nightmare of the day... because the Prez was going to be there, of course everyone and everything had to be searched... on 4000+ people! They had metal detectors and people to search through purses, and the security people were moving RIGHT along. However, as people handed in tickets and moved in from the outside into the queue, they refused to get in line behind us since there was an open space in front of the door and they could simply butt into line. We were "fronted" by a gaggle of private school girls and their sneering matron... they actually separated Ken and I, and when I gently complained the lady simply stood there. Another couple in line asked her to move aside and she said she would, but then she started shoving the schoolgirls through the line in front of her. :::sighs:::

Once I reached the security screeners, I figured I'd end up in the same trouble I'd had at court. (I did leave my back-brace screwdriver out in the car, just in case). My brace set off the metal detector so I had to be "wanded". I explained to the guy that I wore back and leg braces and he asked me if he could check. I offered to show him and he said no, he could tell just by patting me down. So he very gently put his hand on my back, and then on one of my legs, and said I was just fine. Then I wandered over to where my purse was being sorted. They were VERY thorough... everything in every pocket was opened... but it still took the lady less than 90 seconds... and that was including my explanation of the epi-pen (which I do by rote when going through security)... but guess what, she actually knew what it was and gave me no grief over it. The courthouse folks could learn a lot from Secret Service!

Then we went along in a much smaller queue into the hall. At first we were sorted into a "standing-room only" area... many more people came, I think, than they expected!! Ken and Sherra went over to ask the organizers if there was ANY way we could have seats due to three of us being too disabled to stand the whole time. I think the girls were a little skeptical... three in a party of six and none of the three of us LOOK disabled... but then they saw how Ashley walks, and I let one of them feel of my brace and told them Kayti has similar problems... once they understood that we weren't trying to get over ;) they let us all go sit down in the wheelchair section. It kind of made me wonder if some non-disabled people had lied in the past.

What a blessing it was to finally sit down... but by that point I was in a LOT of pain. I'd left my codeine in the car, too, or I'd have taken one.

Once things began it was a VERY exciting event. Everyone who was anyone in the party for that part of the state was there, plus we got to hear from Elizabeth Dole twice... she was supposed to introduce the President the second time, but he "snuck" into the room and up on the stage... it was funny.

I was more impressed with President Bush than I'd expected to be... and I'm already a big fan of his. In person, in that format (they actually had everyone remove jacket and tie, it was rather "informal") he's very charming, very relaxed and relaxing... he put his audience at ease, which I greatly respected.

He talked in very straighforward terms about his agenda... many people did hopping up and down style cheering. I stood to applaud a few points, but if I'd gone up and down like a jumping jack I'd have been hauled out by EMS before it was over, I'm sure.

One thing he talked about extensively was medical reform... and the right of patients and doctors to make medical decisions, not bureacracies... HURRAY!!

After it was all over, the handicapped section was dismissed first. If we'd been a little faster we'd have gotten out before the President left the room... at which point they froze everyone in space and we stood for about five minutes. Normally it wouldn't have been bad, but for me it was awful. And there was no way to get a chair to me, standing there in the middle of a huge crowd. I found myself quite jealous of the people in wheelchairs.

I immediately downed a codeine. Kayti needed one too but she refused to take it... on one hand I wanted to cheer her courage, on the other, seeing her face pinched up really hurt me.

The parking-lot was atrocious... there was one red van that absolutely refused to merge and so we sat there for long enough that Ken pulled back out of traffic, put the car in park, and shut it off. Why waste gas? We felt really bad for one family who was desperate to get out... the mother-in-law was diabetic and had given herself too much insulin... she needed some sugar NOW (and since no food or drink was allowed inside the event, she had none. Fortunately we had an extra coke, which I hope helped her to wait in traffic and get down the road.

We then headed out... finally... and got into the right-turn lane onto Independence... which turned out to be fine, since there was a K&W not too far up the road, and traffic going the other way on Indy was backed up for miles. So we had a leisurely dinner, and by the time we left traffic had cleared.

I do have to commend K&W for one thing - the man who rings up your order saw Ashley and I coming... him with his characteristic wobblehobble, and me leaning heavily on a cane, and he got someone immediately to carry our trays... we didn't even have to ask. What wonderful service!

I made a decision yesterday... since I'm having a hard time, oftentimes, getting around in large stores like Wal-Mart... and trips like the zoo and yesterday have been disastrous pain-wise... I'm going to talk to Dr. Koman about getting a wheelchair. I won't use it all the time (unless I'm injured), but for going places and doing things... :::sighs:::

Which is better? To continue to walk, and drive up my pain level so much... or avoid the pain to begin with? I probably could have done yesterday with just tylenol/aspirin combo, rather than a narcotic, if I'd not had to stand for so long, and if I'd had a gentle seat rather than a folding chair.

:::sighs::: Not an easy decision to make.

Ken and Sherra were very concerned, due to my pain level, if I'd enjoyed going... OH YES. I'll go and see Bush again, if I ever have the opportunity. :)
Current Mood: awakeawake

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September 15th, 2004

12:57 pm - groans
Last night I was talking to Sherra, and walking through the kitchen... I sneezed and ended up on the floor when several ribs forcefully dislocated from my breastbone.


One won't go back in....

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September 4th, 2004

12:30 pm - gak.
I'm simply spending today in bed. I'll probably get up at some point, to take a hot bath... then i'm coming right back here.
Current Mood: gloomygloomy

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September 3rd, 2004

10:02 am - For some reason
I am in an incredible amount of pain. I wish I could figure out why. Off and on I've been able to attribute it to tropical weather... but right now at this moment the sun is shining and there's no storm (Frances is brooding off the coast though - the respite is brief).

So why am I hurting so badly?

I'd like to claw a few ribs out, do surgery on my left wrist, replace my jawbone, and refuse to walk again - ever.

Today I'm curled up on the couch, adamantly refusing to move from here. Thank goodness for laptop computers. I'm popping bunches of pills but can't take narcs until after 5... got to take Bobby to drivers ed. :::boggles:::

I have a hoard of morphine for Monday when the storm hits... although in fairness I may take it tonight. :(

Why? Why? Why? What have I done to cause this?

I'm wondering tho... I'd commented earlier that I had not eaten any gluten (which exacerbates my pain) but I'm wondering if i have because my face is broken out which generally has an allergy connection. Hmmmm. Will examine the diet. Might need to pare down to rice and juice for a few days.

I did have one success this week; yesterday I started teaching Lucy to pick up my keys if I drop them... she got the concept almost instantly although she likes to toss them up in the air rather than giving them to me. But it's progress! :) (For new readers Lucy's the puppy I'm training as a service dog)

Off for now...
Current Mood: soresore

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08:07 am - pain is a pain
ehlers danlos hypermobility life tips, from Harvard Neuro's web forum.

Above offers some tips for dealing with it.

I'm about sick of it.
Current Mood: annoyedannoyed

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August 31st, 2004

08:34 am - Blame Gaston
Gak. Gaston.


Perhaps, when they're off in the Atlantic, large explosives could be detonated within these storms to blow them to smithereens so they're just so many little rainstorms?

I spent yesterday on the couch praying for codeine, unable to take any because I was going to have to take Bobby to Driver's Ed and then both kids to Explorers (they're both Junior Firefighters).

It was very, very, VERY bad.

It started to feel better around the time I took Bobby to DE - the sun came out a little and it got VERY VERY warm. Kayti and I took Lucy to the park for some training. It turns out she is very afraid of strangers!! How wild is that? We'll have to work on getting her acclimated, can't be having that!

Today is a little better. The left hip hurts but that's been bad all along. The ribs/back are a little better, Ken rubbed them last night and popped a few rib heads into place. Hurt at the time but then it felt better! :D

Today I'm propped on the couch again, doing online stuff (might write an article - heh). I *might* do a little housework today... the bedroom's looking bedraggled, there's piles of clothes and junk all over the place in there. We'll see. B+K are working on their schoolwork, it's very quiet in here! We've got DE at 3. Might buy some ice cream while we're in Randleman...
Current Mood: contentcontent

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August 25th, 2004

12:28 pm - I think every bone is dislocated and twisted.
I don't know what I've done to myself. I really haven't done anything, which is what is confusing to me... I ache everywhere, my joints all hurt, all my ribs are out, there's a huge lump in my left hip-bone, when I open my mouth my jaw pops out, my toes are all popping and snapping... should I go on?

It doesn't seem to be the weather, as it's sunny out. There's no hurricanes. I've not been foolish with exercise or doing too much. But honestly, truthfully, I'd like to curl up in a corner until my body is done its present level of betrayal.

I've gotten to where I don't mind not being able to do things most of the time - I can accept my condition, that I'll not go jogging and that my fingers will do strange things and that I'll crunch if I turn wrong. Some things are just predictable. If I stoop down to pick something up off the floor I will hurt myself. If I roll over wrong, I will hurt myself. If I pick up something heavy, I will hurt myself. Predictable.

I can't stand this when it's unpredictable, when nothing happens, when I do the right things, and I still hurt.

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August 2nd, 2004

09:44 am - Alex'd and Codeined
Tropical Storms should be outlawed.

TS Alex, the first named storm of the '04 season, is simmering off the Carolina coast. it's EVIL (no offense to any human who happens to be named Alex).

The very outer bands of the thing spun up here to Greensboro yesterday. I didn't even realize it, I just knew all of a sudden at church that


People started asking if it was due to the storm.

Storm? What storm?

Then people started muttering about us being at a high security alert for terrorism.

Alert? What alert?

Then the missionary who spoke last night said that some churches in Iraq had been bombed.


We have this expensive sattelite and don't bother to even watch the news OR the weather.

I'm spending today in bed - not even bothering getting up. Not going anywhere. Too much pain... serious, serious pain. Already took codeine so won't be driving anywhere at least until late this afternoon. :(
Current Mood: soresore

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July 29th, 2004

07:14 am - It's a zoo around here...
Ken found a $2 coupon to the zoo in Sunday's paper, so we went on Monday. I figured it wouldn't be too bad, because the weatherman said it was going to be a nice, cool day. We slept in (we actually forgot about going, we were so tired!!), and remembered at about 11!! Got there about 12:15, so it wasn't an all-day affair. We figured we could just take it slow, ride the tram a lot, and it'd be ok.


After about 45 minutes, DD started eyeballing the people in motorized wheelchairs and sighing. After about an hour I was doing the same. She got grouchy because she hurt. We'd left the codeine in the car because we didn't figure we'd need it until our late lunchtime at least. ::sighs:: I'm such an idiot.

By the end of the day, we were both limping around.

Yesterday I drove over to W-S and had my appt with Dr. Koman about this damaged middle finger. He felt of it, and didn't feel the nodule at first. The x-ray showed it, tho... He hollered to Susan - "Come look at this!" and I inwardly groaned. Came back over and felt of it again and asked "Is it bad enough for me to do surgery on it?"

Ummmmmmmmmmmmmmm ::::squick::: nooooooooooooooooooooooooooooooo.

He says it's either a calcium or collagen deposit, and it might go away on its own. Since its not impeding range of motion, not causing too much pain in daily use, and its presence actually gives more stability to the finger... !!!! well, it won't kill me to leave it alone and see what happens. OK.

Here's what I want to know - and will ask next time we're up there - if EDS patients don't build collagen, HOW CAN THAT BE A COLLAGEN DEPOSIT?


Maybe it's like an inside-out keloid scar? Keloids are collagen-gone-wild on the skin, which makes no sense in someone with EDS (to me) but it happens. DD has huge ones. So perhaps it was like that.

Sooooo... I was prepared to holler at Susan and Dr. Koman, if necessary, about the pain clinic problem and the diagnosis problem... turned out that I didn't need to holler at all. I told them about the zoo incident and both of them were very moved by it, and by the fact that the PC's we've contacted either didn't want to deal with EDS or didn't want to deal with a minor :::sighs:::. Dr. K said that there's an excellent pediatric pain doc right there at the hospital that DD may be able to see! :::happy dance::: And then, I mentioned the diagnosis problem (Dr. Jewitt says that DD *doesn't* have EDS although her symptoms are the same as mine and worse), and he said that this doc he wants to send K to may be able to help sort that problem out! :::happier dance:::

Someone, somewhere, needs to give the girl a definitive diagnosis. If she doesn't have EDS, then IMHO I don't either. Two people can't have such consistent symptoms and not have the same problem! And if EDS isn't our problem - what is? Dr. Koman grinned and said "ligamentous laxity...or, EDS" and ducked.... because really, it's the same thing.

Then he broke my heart... he grabbed my hand and APOLOGIZED to me that he couldn't fix us. He said that he's a surgeon by trade, he likes to fix things; and there's not a thing he can do to make us better. I started crying - both because it really hurts to hear that again, and because it was good to know that he cared that much, you know? He's such a good doctor. I told him that it doesn't matter so much that he can't fix us, it's an incredible thing that he simply understands - we've gone so many years not having anyone who knew what was going on with our bodies. Now we have someone who knows. That made him feel good, I think. :)

When I have the money I'm going to get the kids and I new medic-alert bracelets (prob necklaces) with EDS Type I on it - Dr. Jewitt said that I've got facets of I, III, and VIII - in an emergency room setting type I is really all they need to know (III is so similar in joints, VIII is what affects teeth). The kids symptoms are consistent enough with mine that if an ER watches out for type I symptoms they can't go wrong. I also need to start wearing a peanut allergy med-alert. ::sighs::

Well... that's it, for now...
Current Mood: stressedstressed

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July 9th, 2004

12:32 pm - not much going on.
Now that I've gotten myself splinted to the nth degree, there's not that much exciting happening anymore. Gee... ;)

I do have to be careful with the ring splints, though, if I take them off I have to remember to put them back on the RIGHT fingers. I accidentally swapped the pinkie finger rings between the two hands, the size difference is only 1/2 size but YOWSER that really hurt!!

The other thing I've learned is to put that rib brace on first thing and take it off last thing. Can't remember the last time I needed a codeine just to get through the day...

So that's really about it!

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May 30th, 2004

01:18 pm - I'm SOOOOOOOOOOO bad.
It's been ages since I wrote in here. What's happened?

Ring splints - most of mine fit, after an initial panic that none of them would. I tried wearing them the first night. My fingers swelled up, got black, had to ice my hands and take lots of codeine before I could pry them all off. What was really scary is that some of my fingers were numb for days! And both my hand therapist and Cindy @ Silver Ring were out of town. :::boggle:::

So I went without, and then re-arranged them somewhat. Four are just plain TOO SMALL. The fingertips should have been sized bigger - apparently your fingers widen, esp. when typing, and the ring has to accommodate that.

The first week that I put them all back on, I took the fingertip ones off at night - if I didn't, they'd swell up! But now, I wear them all, all the time. I guess it was a matter of getting used to the things. :)

The only problem I really have with them is that they pinch - I have two on each finger, and they pinch the skin in between. I don't think there's any helping it besides building up a callous.

I REALLY love them! I can do so much more with my hands - especially my thumbs!! It's incredible!!!

Rib Brace- I've gotten to where I wear the thing most of the time except when I'm sleeping. I had been fudging... if I was spending the day on the couch I wouldn't bother to put it on...but by mid-afternoon I'd be in agony from them moving around. Now I get up in the morning and automatically put the brace on. No more problems!

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It's been ages since I wrote in here. What's happened?

<b>Ring splints</B> - most of mine fit, after an initial panic that none of them would. I tried wearing them the first night. My fingers swelled up, got black, had to ice my hands and take lots of codeine before I could pry them all off. What was really scary is that some of my fingers were numb for days! And both my hand therapist and Cindy @ Silver Ring were out of town. :::boggle:::

So I went without, and then re-arranged them somewhat. Four are just plain TOO SMALL. The fingertips should have been sized bigger - apparently your fingers widen, esp. when typing, and the ring has to accommodate that.

The first week that I put them all back on, I took the fingertip ones off at night - if I didn't, they'd swell up! But now, I wear them all, all the time. I guess it was a matter of getting used to the things. :)

The only problem I really have with them is that they pinch - I have two on each finger, and they pinch the skin in between. I don't think there's any helping it besides building up a callous.

I REALLY love them! I can do so much more with my hands - especially my thumbs!! It's incredible!!!

<b>Rib Brace</B>- I've gotten to where I wear the thing most of the time except when I'm sleeping. I had been fudging... if I was spending the day on the couch I wouldn't bother to put it on...but by mid-afternoon I'd be in agony from them moving around. Now I get up in the morning and automatically put the brace on. No more problems!

<bDD's Arm</B>- She rested her wrist down on the couch for a moment, and apparently rested too much weight on it because she snapped it and came to me shrieking. I knew right off that this was serious. Went to the doc the next day, x-rays showed no break but Susan casted it anyways, saying that some cartilage-thingie in there was probably torn/broken/damaged. Cast for three weeks. Urgh... casts are no fun in this heat!!

Well, that's about all = except that the puppy is growing huge!

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May 5th, 2004

07:06 am - Going for another ring splint fitting!
DD and I are going to meet up with Wendi for another ring splint fitting this morning... we're praying that all the splints fit and we'll be allowed to wear them home today!!
Current Mood: anxiousanxious

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May 4th, 2004

07:17 pm - If you live in chronic pain...
this is one of the best examples of what life is like that I've ever read: < A HREF="http://www.livejournal.com/users/rideon/81641.html#cutid1">The Spoon Theory</a>.

Dr. Ross wouldn't call in a scrip for DD... he wants to see her and perhaps put her on something quite strong. She's decided to stick it out for a few days and see if she gets better. On top of it all, she's come down with some sort of stomach virus. She's managing to smile, though, in spite of it all. :)

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May 3rd, 2004

08:16 am - A long long night - again.
I gave DD a temazepam (sleeping pill) and a codeine at about 9... and took one myself. I also gave DS two benadryl because he was a) hurting and b) off-the-wall hyper. He was sitting and picking the nose of some guy on the television set. Then he was running around the house wildly.

For any who don't know, DS has high-functioning autism as well as EDS. He does some things which seem strange to us on occasion.

DS reports that he didn't sleep at all last night. Is that true, or does he see that his sister gets to lay in bed for a couple of hours this morning? We'll never know. He's a mimic. If I stumble going up the stairs, you know he's going to within half an hour. If I fall down, he's going to. If DD stubs her toe, he'll do it worse.

I know that DD got no sleep last night, because I didn't. Temaz usually works on me and Temaz+Codeine knocks me flat out. It doesn't do a thing for her these days. :( With me, I build a tolerance to the stuff rather quickly... if I take it three days in a row, I won't sleep much the third day. So I limit it to when I'm in excruciating pain, and do the same for her. Since she hasn't had any in a couple of weeks, this is no tolerance problem. :(

So, I'm calling the doctor in ten minutes when they open, and asking them what we should do.

- Why don't pain clinics accept children and teenagers? Don't they hurt too? When I talked to the dolts over in High Point on the phone, they acted like couldn't care less that DD was in pain, and implied that nothing really could or should be done until she hits that magic age of 18. THEN she'll be worthy of treatment. ONLY then. What's she supposed to do for the next 4 1/2 years, turkeys?</blue>

Hopefully when we see Susan (Dr. Koman's PA) next week, she'll have some ideas for where we can go.

Current Mood: annoyedannoyed

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May 2nd, 2004

08:33 am - Sighs
We so desperately needed this rain... I hate to gripe about it... but DD and I hurt. She was up all night tossing and turning because her ribs and hip hurt. I sent her back to bed this morning with orders to take a codeine first. She went to bed, not sure she took the meds. She doesn't feel like the codeine does her any more good than Darvocet. I wonder about that, because I read in Reader's Digest last month that some people have genes that affect how they respond to certain drugs... some folks can take triple the dose without much affect, others could get very sick from taking the regular dose.

Went out walking the pup this morning, and my left hip is grinding away. I probably should put my knee braces on, but quite honestly I don't plan on getting up from the couch today. We can't go to church because we have no ride (Tim and Vicky are in Florida)... I'm just going to sit here with the laptop and get some stuff done.

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April 30th, 2004

01:44 pm - Well, Kayti's doing somewhat better...
She's up and able to walk today. Hobble is more accurate. She has a goodly bruise, and her knee looks rather askew but since she says it doesn't hurt much, I'm not going to take her right up to the doctor's. We'll monitor it over the weekend and see (it's not like we're far from the ER if her symptoms get worse.)

It's just really hard seeing her huddled on the couch all day. :(
Current Mood: crankycranky

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April 29th, 2004

07:58 pm - Teeth. Who needs em?
Well... the appointment was NOT what I expected. Nor was it what the dentist had anticipated, having seen me last week with Ken.

He was prepared for my terror of him (and handled it VERY well, indeed) and he was prepared for the condition of my teeth. I was somewhat prepared for the terror, they gave me a room with only a small silver mirror in it for "dentist tools" -- no drills hammers needles screwdrivers.

I dislocated my jaw getting the round-your-head x-ray taken. Not a big deal, happens all the time, but it freaked out the nurse.

Doc came in, put me at ease, and announced that my teeth needed to be pulled. Then he dropped the bombshell: My jaw joints are in such bad condition that if he pulls my teeth, they'll deteriorate in a matter of a few years and need to be replaced with artificial joints. This, of course, is highly contraindicated with EDS.

He said a real danger for me is one day not being able to open or close my mouth... it'll just get stuck.

He wants me to see a regular dentist, and gave me a referral to a friend of his that he says is excellent. He's going to talk to the dentist about if there's ANY way to save ANY of my natural teeth. He doubts it, but since he's an oral surgeon not a dentist, he's going to let this other guy make the call.


I knew my jaws were bad... but... not bad enough for someone to ever mention my name and joint replacement in the same sentence! This is like being between a rock and a hard place.

BTW, if anyone's in the Piedmont Triad area of NC, Dr. Kent in High Point is THE DOC to go to for oral surgery of any sort. Gentle yet no-nonsense. And very clueful about EDS.
Current Mood: shockedshocked

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07:49 pm - Kayti fell down and went BOOM :(
Was cooking dinner... DD was walking toward the washing machine behind me. All of a sudden I heard a muffled scream and a deafening THUD... but I wasn't deaf, the screaming continued to escalate.

She landed right on her left hip with her full body weight. If it was me, I'm sure we'd be talking about a broken bone or two. With her... I'm not even sure she's dislocated anything. It's VERY painful all over, and there's a small amount of swelling and quite a bit of heat in it... but I think she managed to stay in place. God's grace? DEFINITELY.

She's in enough pain that I gave two codeine, a large ice pack, and a strawberry popsicle. She's camped out on the couch for the night. We'll see how her toes are in a little while - if they're not turning colors or getting cold, we'll see how she is in the morning.
Current Mood: melancholymelancholy

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April 28th, 2004

09:34 am - Snooze Alarms, Kayti's Ribs, and PUPPY
I keep hitting the dratted snooze alarm. Why oh Why? Because I hurt in the mornings, and the covers are warm, and I'm abundantly a lazy cocooner. Need to cut it out, mornings are prime writing time. Plus I *need* my time with the Lord before the kids roll out of bed, or it ain't happening until after they go back to bed, and by then I'm ready to snooze myself (oh the joys of teenagers!)

DD is having bad problems with her ribs... three or four at a time pop out of joint. I tell her that she's going to need to get a brace like mine, and she snipes and growls at me because it's big and hot and ugly and she feels like everyone will stare at her (probably the truth). Not sure what else can be done, though. :(

Lucy, our sweet, innocent-looking little pup that we'll eventually train as a service dog for me, is no innocent . I took off my hand splint this morning and left it on the bed. Got her out of her crate and took her out to pee, then busied myself with coffee. Since her breakfast had to wait for Ken to get home with the storage building key, she decided to help herself to my splint. It's fortunately not totally destroyed, but most of the padding is gone from the inside.

I swear this dog eats everything. Even the kids can legally say, "The dog ate my homework!"
Current Mood: stressedstressed

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April 27th, 2004

07:25 am - Mornings
Some mornings, I wake up rarin' to go. Other mornings, "my get up and go got up and went".

This morning, I've got good energy. Must have slept pretty well. Could dance the cha-cha except I've got one rib that's annoyingly out and since it's one of the lowers, it won't shove back in. Might try twisting in a little while... and I have one toe... ONE TOE... that's out. Will probably get up the gumption to put that back in shortly. Other than that, I feel great. For the most part, I don't even have all of my aches and pains! Praise God!
Current Mood: chipperchipper

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April 16th, 2004

12:15 pm - Fingers
What do you do for a little girl who's fingers won't stay in joint? Just tape them all up? That's what we're doing, and it really, really stinks :(

I hope those ring splints hurry up and get here.
Current Mood: enragedenraged

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10:34 am - Of COURSE they have EDS.
We've had a confusing two weeks, and I guess I'm just still confused... but a bit reassurred in the end.

Our orthopedist, Dr. K, sent us off to Medical Genetics last week to determine what type of EDS we have, once and for all.

Dr. J over there looked at me, looked at DD, and poked over DS but didn't give him a thorough exam.

She announced that I have EDS - but apparently she never actually typed me, which is what we FLIPPIN PAID HER ALL THE MONEY FOR - she's saying that I have aspects of three types: Classical (formerly type 1), Hypermobile (formerly type 3) and Periodontal (formerly type 8).

Then she rocked our world by saying that neither of the children have it. They're not hypermobile, they have no skin signs of EDS, DD's scars have no bearing on the disease, DS's ability to tie himself in knots doesn't matter, his pinkie finger that turns at a right angle is insignfificant... the list could go on and on and on and on.

Then she rocked it a little further, because I of course said, "Well - what DOES cause their joint problems?" and she said, "I don't know. Something I can't diagnose right now. Another genetic syndrome perhaps. Or perhaps just bad genes from you."


Sent me into a tailspin for about a week.

There really aren't any other genetic disorders that cause this symptom set - that I've found - other than EDS. The more I looked at it, the more I became convinced that the kids DO in fact have it.

  • Both bend at odd angles at odd times, right out of joint. No, you cannot take either of them by all four fingers and bend "whole hand" straight backwards - but you can bend individual fingers backwards - and you can also bend individual fingers sideways. They also sublux or dislocate at nearly every other joint - jaw, shoulders, wrists, kneecaps, ankles, hips, neck and backbones... and I wonder if the good doctor would have said "hypermobile" had she seen their toes touch the tops of their feet. Or if she'd seen what their ankles could do.
  • They both have slightly stretchy skin, like me. It's not the VERY stretchy skin that you see on pictures of EDS, although on some areas of his body (like his neck and stomach), DS's got some that's remarkable... other docs have commented that it's just not normal. They also both have very soft skin.
  • Both children have fragile, easily damaged skin with poor wound healing.
  • Neither of them have the bruising issues that some EDS folks have, but they do get some spectacular bruises... sometimes from the inside out. When K's hips pop, she gets them. It's also not uncommon to see shins that are dotted with black spots. They don't happen to be covered now because we've been in school, not out playing all that much.
  • They both have chronic, chronic PAIN. DD far worse than DS, but he's starting to get it. They've both had the excruciating growing pains that I grew up with, the pain from repeated subluxations, the body aches.

So we go back to see Dr. K this week, and he wanted to know what Dr. J said. I told him, and he dubunked it quite thoroughly. "Of course they have EDS," he said. "You have it, they have it." He'd just wanted to make sure we didn't have the very dangerous type 4... he said not to worry about what she'd said.

So now where does that leave us?

I trust Dr. K far more than Dr. J... we've had a relationship with him for months, he knows us, he's seen us, he's treated us...

I guess it leaves us right where we started: the three of us DO have EDS. What type do we have? Well - that's undetermined, but the more I examine the evidence I think we probably have classical type, not hypermobile as we were originally diagnosed. The scars fit better with classical. My teeth surely do. Come to think of it, so does the skin. I've met one person with classical (our physical therapist)... and it's not out of line, I think.

Next steps - need to get my teeth out. Dr. J DID say that my teeth are definitely CAUSED BY EHLERS-DANLOS SYNDROME, no doubt about it. Dr. K backed that up 1000%.

Need to get our eyes checked by Dr. Young. I didn't know that eye problems can be concurrent with EDS. (Incidentally, she wanted DD to have her eyes checked too. Now, if DD doesn't HAVE EDS why would she want them checked? DS had just had an exam so he wasn't an issue :::snark:::)

Dr. K is going to follow the children's scoliosis... DD's is only 10%. He says it's not a big deal. It looks like a big deal to me, on the x-ray! But he says it's not a big deal. He's also going to look at DS's fingers and see if he needs ring splints. I'm 100% sure he does on that one pinkie finger... the rest I'm not sure about. He's got some hypermobility in them but not quite to the extent that DD and I have!

So... that was our April Adventure! May May be a better month...
Current Mood: grumpygrumpy

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April 12th, 2004

08:12 am - Easter dresses and ASO's
I have the prettiest linen skirt and top set - it's an off-white linen with blue embroidered flowers at the hem lines. I love it. It's got fairly big shoulder pads, which helps to obscure the top of the rib brace. And the skirt's just long enough to cover the knee braces.

Of course, it calls for white sandals to be worn with it.

I wore it for church yesterday, sans ankle braces. By the time I was done going about church (we go to a BIG church), I was some sore... so I put the braces on with the dress. Urk! Black braces with linen skirt and strappy white sandals. Didn't quite go. But it felt better!

Why can't the people who make the braces make them in white also, and in flesh-tones too? Why just black? That seems silly to me. If I'd had white ones, they would have still been quite visible, of course, but not nearly as glaring.

Oh well. It was a beautiful resurrection day :) The rain held off most of the day. Our choir sang beautiful praises to our King, our pastor preached one of his best messages ever, and we ate a hearty dinner with excellent friends.

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08:11 am - He is RISEN!
Hallelujah! Christ the Lord is risen indeed!

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April 3rd, 2004

11:09 am - Official EDS Symbol
Rabecca Primeau of http://community-2.webtv.net/RLPrimeau/OfficialEhlers/ graciously allowed me to use the official EDS symbol... the frayed knot. Fitting, isn't it?

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March 31st, 2004

06:44 am - Well now...
I shouldn't have done that, I guess.

It was SO nice, we took the dogs for a VERY long walk - all the way around the circle we live on. Not sure how far that is, but for me, it's FAR. I stopped and rested a lot, and by the time we were halfway I was *done* but since I had to walk home anyways, we kept on - after all, it's the same distance, right?

WELLLLLLL. I woke up the next morning with a lump behind my knee. It was warm, reddening, and it really HURT. It hurt worse if I bent my toes back, and if I went down the stairs (same motion). After a few hours, it hurt to walk (heh - partly because of that, and partly because I was unable to put the knee brace on).

Those are the symptoms of DVT - yep, a blood clot.

I went over to my friend Katie's and we spent the morning making pelmeni (russian meat dumplings). She had to do the dough-rolling, I discovered upon trying that I just can't DO a rolling pin any more. :(

As I was there, it was getting worse so I asked her what to do and she fussed that I shouldn't put it off, as soon as Ken came we should go to the ER. She's a nurse and knows about these things.

Well, we didn't, we went clothes shopping instead - I needed something to wear to a dinner that night. Well, after limping around the store for an hour I limped into a dressing room to try on a pair of pants... and the thing looked bigger and rather angry.

So I called my doctor, who said "It's probably not, but given your symptoms and risk factors for DVT... you'd better go." Well doc - can I put it off until after the missions dinner? "No." Can I go to W-L hospital, the *fast* emergency room? "No."


But he was right, it's sort of along the lines of "when you're sixty, eat chili, and get chest pains, you don't wait around on the couch to see if you're having a heart attack, you go and get checked out."

A DVT can kill you. It's a clot in a vein, and if it moves to a heart, lung, or brain... you are seriously messed up, if not dead right off.

The ER was of course, a ZOO. Saturday and no nurses in Triage. Finally got a room and the doc came and felt of it and said, "yep - in all likelihood you have a clot."

I should mention that I had sent Ken and the kids on to church for the dinner, so at about this time, people were beginning to pray for me.

The doc ordered a doppler test, which is sort of like ultrasound. There's apparently one person in Greensboro who does the things, and she was on another call... more waiting. When she did the test, though... she found NOTHING. No evidence of a clot.

I had her feel of the lump, and she theorized that I might have pulled or torn a ligament in the back of my knee, especially with the EDS as a complicating factor. "Check it with the doctor," she said... "you don't have a clot there."

So, I laid around waiting for the doctor... for THREE HOURS. I periodically asked after him, but they said they hadn't seen him. About the time I got a call from Ken, who was about to leave the church, and Katie the nurse yanked the phone out of his hand, I started getting attention from the hospital staff. Katie asked me, "Who's your doctor? Where is he? Why hasn't he been back?" and I told her. Then she hollered (ouch!) "WELL WHO ON EARTH IS YOUR NURSE?" and I started naming names. Got rather vocal about the fact that I'd laid there for three hours, and that if they'd discharged me on time, I could have gone to the presentation part of the dinner. Not nasty... just.... vocal.

Well, the gaggle of nurses overheard it, and within a minute - literally - they had flagged down a wandering PA, who came in to discharge me. She told me to go ahead and stay on the phone... but then she squeezed my leg and smiled and said, "Does this hurt still?" I hung up on Katie and resisted the urge to smack her and say, "Does this?" I WAS GOOD. I really was.

So the PA agreed it was probably a ligament, take some codeine and call your doctor on Monday, and she sent me home. I made them give me a cane. That took a while too, but it was helpful that night and Sunday morning.

By Sunday afternoon I was hobbling better without it, and now - Wednesday - there's still a little tenderness and if I step wrong, I know it... but I was able to get the brace on yesterday, and the kids and I took another walk before it started raining. This time, we just went across the street to see the cows. Took me a while to get there, but I did! I guess I learned the lesson of starting small, eh?

• Age greater than 40, and increases with age
• Birth control pills
• Cancer (although having a clot does not necessarily mean that you have cancer) and chemotherapy
• Certain congenital heart defects
• Congestive heart failure (CHF)
• Chronic respiratory failure
• Hormone replacement therapy (HRT) (often administered to postmenopausal women)
• Obesity
• Prior DVT
• Prolonged immobility or paralysis
• Stroke
• Surgery, including orthopedic, pelvic, and abdominal surgeries (which can trigger the formation of blood clots)
• Trauma
• Varicose veins (varicosities)

Symptoms of DVT may include pain, swelling, discoloration of the affected area, and skin that is warm to the touch. But up to 50% of deep vein thromboses produce minimal symptoms or are completely "silent."

Because a number of other conditions, like muscle strains, skin infections, and inflammation of superficial veins (phlebitis), display symptoms similar to those of deep vein thrombosis, the condition may be difficult to diagnose without specific imaging studies.

Symptoms of DVT may include:
• Pain
• Tenderness
• Swelling
• Discoloration
• Warmth

Because inactivity slows down blood flow, patients who are paralyzed by a stroke are at high risk of DVT. So are postoperative patients who are confined to bed, or anyone who remains relatively immobile for hours at a stretch, such as during a long automobile ride or airplane flight.

For more information, visit: http://www.dvt.net/html/signs.html

Copyright © 1999-2004 Aventis Pharmaceuticals Inc., USA. All rights reserved.

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March 26th, 2004

07:45 am - Taking a WALK!
Wow - it's nice enough that we're going to take the dogs for a walk this morning!! Hope we don't hurt ourselves in the process.... Yikes!

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March 25th, 2004

10:21 am - I know, I know, I've been lazy
but it's spring, and I'm feeling ever so much better...hard to sit here and update this journal when it's nice outside.

I'm actually feeling a little bit better.

Enough that I could get out and plant some seeds in the herb garden! Hoed it out and put in compost, and planted seeds. I even helped Ken with clearing some brush and burning it the other day. THAT I paid for. I'm laid up on the couch now, but even though I hurt, I feel pretty good.

I started having some bad pains in my thumbs the other day, couldn't figure out what was wrong, popped them back into place (they subluxed at the very very bottom). Finally I figured out that the wrist braces ride along the bottoms of the thumbs, and were aggravating the joint. Haven't had the braces on in 4 days, and they're not hurting... but the wrist pain is starting to get to me again. :::Sighs:::

I need to start walking every day. It's a gorgeous day outside, almost 60 already, I think we'll go for a walk in a little while with the small dog! :)

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March 18th, 2004

07:47 am - I'm practically tap-dancing around...


Go and check this website out... type in specific dislocations and subluxations in the search box.

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