Living with Ehlers-Danlos Syndrome

Healing

2006-09-26T13:38:54Z

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!):

http://kathisharpe.wordpress.com/2006/09/18/dancing-for-jesus/

Praise the Lord!

Check over there at kathisharpe.wordpress.com for further updates!

edsliving @ 2005-08-08T20:15:00

2005-08-09T00:46:12Z

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.
Dizzy?
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.

Wow.

2005-07-25T19:25:57Z

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.

well.

2005-07-16T17:40:10Z

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.

Oh My.

2005-07-14T13:48:43Z

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! :)

woke up this morning

2005-07-12T12:12:02Z

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!

Tropical Weather

2005-07-11T21:48:59Z

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!"?

hehehehe....

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...

So:
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.

Thumb update

2005-04-28T20:55:21Z

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.

:)

Cymbalta and my thumb

2005-03-18T13:51:44Z

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.

Sighs and cries

2005-02-24T14:07:45Z

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.

The most helpful tip I know

2005-01-23T12:37:05Z

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...)

a GREAT site

2005-01-22T13:27:51Z

http://www.restministries.org/ARTICLES/art-brokenbutdont.htm

Found this yesterday. Fantastic!

Thumb Fusions

2005-01-17T13:41:17Z

Urg.

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. :)

You can decoupage a cast!

2004-12-16T22:02:11Z

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!

Honest Questions

2004-12-14T21:25:43Z

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?

OOOOOOOOH I AM SO MAD

2004-11-10T13:25:34Z

APRIA HEALTHCARE.

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...

Well, we have one on order!

2004-10-23T13:30:25Z

Invacare Storm Series. Not a bad chair. It's much quieter than the Quickie. Smoother manuevering.

Thanks :)

2004-10-18T13:05:17Z

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!

Well, I go tomorrow

2004-10-18T12:39:14Z

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...

Wheelchair approved!!

2004-10-15T20:45:59Z

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!!

wheelchair

2004-09-20T15:10:50Z

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.

:::sighs:::

Yesterday....

2004-09-18T13:59:06Z

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.

Urgh.

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. :)

groans

2004-09-15T16:58:18Z

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.

SCREAMS

One won't go back in....

gak.

2004-09-04T16:31:30Z

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.

For some reason

2004-09-03T14:12:21Z

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...