Health

     I've been AWOL yet again.  I always mean to come back and start writing again but life has been so horribly hectic with everything going on.  It's been a year since I cut bio-mom out of my life.  Stress wise, it's the best thing I could have done.  The constant feelings of never being "good enough" or "worthy" of her time. love and attention were issues I didn't need to experience while dealing with other issues. 

     When I started writing on here, I knew I had health issues.... many joint issues and surgeries.  The why wasn't anything I had bothered to even try to figure out.  It was... and still is... my life.  Fall a foot, rip 7 tendons off 2 shoulders.  Yep... that's me.  2 tummy surgeries, 2 prolapses, back issues, fatty tumors, 12 joint surgeries and never-ending joint issues. Welcome to my life.  And then a doctor finally put it all together.  I was diagnosed with EDS... Ehlers Danlos Syndrome.  They affectionately call us "Zebras".  The reasoning behind it is that doctors are taught that when they "hear hoof beats to think of horses - not zebras"  In other words, think simple and common - don't go looking for the exotic.  But we are the exotic.  Misunderstood and misdiagnosed constantly.  People thinking that we "look healthy = we must be faking or we are healthy".  Our pain and issues overlooked and we're called "pain seeking or drug addicts", "hypochondriacs", of just plain "crazy".  We couldn't possibly have the issues that we complain about and how can people hurt in different places by the hour or week.  How can someone who (at that time) hadn't turned 40 yet, be looking at their 10th joint surgery.  How can we do the "parlor tricks" that come with being hyper-mobile and look fine yet be living in never-ending pain and collapse without warning.  

So what is EDS?  It's a genetic disorder.  It is a SYNDROME which is how so many of us go undiagnosed or misdiagnosed.  While there are similarities with people who have EDS there are 14 (currently) sub-types of which the "experts" have changed the number and name of the sub-types as well as the diagnosing criteria several times just in the last few years.  People who were considered to have Hypermobile EDS (hEDS) - some of them have now been dropped down into a sub-category known as Hypermobile Spectrum Disorder (HSD).  Since there's no genetic marker for hEDS - from what I can tell, it depends on the doctor and how he feels you fit the current criteria.  Good luck.  Some people have all kinds of issues with docs and support.  I've been fairly lucky that I've had good luck with finding decent docs.  My doc came to me with a diagnosis and since then, I've had 3 other docs confirm.   There are genetic markers for some sub-types but not all.  Even people with the same sub-type might react differently to the different treatments (of which there are many and differing ideas even within the medical community of what works).  We have different co-morbidities (different other diseases that come along with the syndrome).  Our collagen is faulty.  Some people say ... well, take collagen or collagen substitutes.  I had (what I thought was) a good friend tell me to "just take vitamin C and you'll be cured".  Yep.  Taking vitamin C encourages collagen production.  The problem being... "normal people" who make collagen make cake mix.  People with EDS make brownie mix.  So even if I took a supplement to make more collagen (like Vitamin C), I'd make more brownie mix.  It's not going to change what my body makes.  Adding more flour to a brownie mix doesn't change it into a cake.  Adding more brownie mix to brownies doesn't make a cake.  You just have more brownies.  And what makes it harder is no one knows yet why we're defective.  We just are.  All they can do at this point is manage the symptoms and damage and different docs who are "specialists" can't even make up their minds or come to a consensus as to what works best.  Because for some people PT is king.  You build the muscles up to where you incur less damage.  And maybe that works for the younger ones suffering if they catch it before too much damage is done.  But what about people like me?  People who have already done more damage to their body (unknowingly) than can even potentially be fixed.  Well, sometimes PT works, sometimes it doesn't.  Depends on the joint and the amount of damage that I've already done.  Depends on if the PT has ever heard of EDS before.  Anyone want to do an experiment, just out of curiosity - ask any or all of your docs if they've ever heard of it.  Let me know how many of them have any familiarity with it at all. 

     So the current excitement in my life.... Joy at getting a walker.  One of the ones with a seat so I can get out and about more.   The other joy was finding out I wasn't crazy.  Yep.  Find out I have a syndrome with no cure and a death sentence and be happy.  Because there is a reason I feel like this.  There is a reason I've gone thru all this.  My body is defective... not my mind.  Ok, maybe my mind is a little defective but I wasn't imagining all the hell I was going thru.  Now I just go thru hell wondering when the idiots in charge are going to mess with my medicine and confine me to bed on a permanent basis.  But that's a rant for another time.  I really don't want to dwell on that fear right now.  The more idiots screw up, the more the idiots in charge punish the people they can get at.  They can't stop criminals from breaking the law because by definition... that's what criminals do.  And if they'll break 1 law - they'll break 10.  So since they can't control the criminals, they punish the innocent.  It's disgusting and a shame that this is what the world has come to.  I've lost several online acquaintances.  They committed suicide... They couldn't deal with the pain and the outlook of knowing it will never get better and there's no relief.  Quality of life non-existent.  Nothing to look forward to other than never-ending pain.  And if you've never had to deal with pain like that to where you can't function, can't breathe thru it, can't move, can't sleep, can't function to where it feels like your whole body is going to explode- congrats to you.  Take the worst pain you've ever felt.  Imagine that you live with that non-stop.  Never-ending and that's all you have to look forward to then take away 95%  of the people that have been in your life.  Because that's what happens when you become disabled and can't get out and about to socialize - your friends and even your family do a disappearing act.  You're no "fun".  You're "never around".  You "never want to go out".  FALSE.  We would love to be around.  We would love to go out.  We are simply incapable.  So people just abandon you.  So you're trapped in a pain-filled hell mostly alone. 

Welcome to our world. 

    

is it nap time?

      So, my intention today was to sleep in.  Nanny called me last night.  She said Colby wanted to know if B could spend the night.  I was thinking - cool!  No having to get up in the morning.  James had the day off so no having to go pick him up.  B gone with Colby means that I can try to get some extra sleep.  I have been so tired.  Not sure why but I imagine it might have something to do with either the fact that I have non-existent B12 in my system (I get to get weekly shots now) or the fact that my blood pressure was so low yesterday (90/53).  Or a combination of the 2.  So, then James slept all day yesterday - only getting up to eat.  And I told him - you're going to sleep all day and then be wandering around the house at night and wake me up.  Oh no he tells me.  Ha!  5:15 this morning.  I'm disgusted.  So much for sleeping in right?  I will exact my revenge.  LOL  That's about strike 2 this week.  I told y'all there's a reason I stay single.  I canna stand cleaning up after anyone that I didn't give birth to.  

   Tomorrow night, B and I are going to the football game again.  My last one for this month and then I'll be back in time for the homecoming game.  B has been nominated for most popular boy in the freshman class and I want to be there to laugh at his embarrassment if he's chosen.  Well, I might go to a football game while I'm in old town.  Maybe go watch some of B's old friends play.  I don't know about that though.  They are all JV players at 5 A schools.  I am afraid that knowing the varsity players and having them hang out at the house and the intimacy of our small community has ruined me for the big 5A games where no one knows anyone unless you're in their little click.  

     So, I was with my little 4 year old cheerleader buddy last night.  She is Colby's cousin and was spending the night at Nanny's house.  So, she told me:  "I goin to Colby's game.  Is you gonna be at the game?"  I said: "yes honey, I'm going to go watch Colby play too".  So she told me "Good, I sit with you".  So, I guess she's sitting with me tomorrow.  Which works on an away game when we can all sit together but for the home games, I can't sit with them because they have reserved seats and we didn't get them.  Unless there are seats open around their seats where someone didn't go to the game and then I can move.  But for the most part- that isn't going to work.  They're going to get my ticket for homecoming for me so that I get in to the game and save me a seat for homecoming too.  Apparently thats the one game that you're lucky if you get a spot to sit down.  And with my body the way it is- I'd never make standing for a whole game.  With me not leaving Dallas and heading back this way till after 2 that day, Colby told Nanny that she would have to put a blanket down for me or something to get me a spot to sit or I wouldn't get a spot by the time I got back this way.  (and we're only talking about getting here at 5 for a 7:30 game).  

    Well, off here to relax before mopping the next floor.  So far today, I've gotten the regular housework done (vacuum, dishes, counters, picking up, laundry) and moved on to cleaning off the fireplace mantle and running all my crystal thru the dishwasher.  As well as mopping the kitchen.  I still want to mop the boys bathroom and the front entry.  And I had to wash the blankets that B keeps over his couch as James went in there and laid on his couch after not showering in several days and put his nasty feet on the one.  Better for me to wash them now than to listen to B take a fit about it later.  They are about done in the dryer so I need to get them folded and put back up before B gets home and I get to listen to him throw a fit over James messing up his room.  I'm all for avoiding yet another issue.  So, off to make things all better before Colby brings B home and there's bloodshed.  Ms Minnie - you keep telling B that he can come live with you.  Would you like to come help break up the bloodshed that occurs when someone messes with "your boys" room?  I think he's like that because being the youngest, he never had anything that was "all his" for the longest time.  Now he's a bit of a possessive jerk about it.  

HA

This post has been moved to:

http://texaskid55.wordpress.com/

Please contact me for the password

Today

Today I go pick up the truck.  Today we load it up.  It's going to be a busy day for sure.  

Yesterday, my Little Man got a rude awakening from his friends.  Yesterday would have been his last time to go to the karaoke place with his friends.  They only let teens in on Tuesday nights.  And a lot of his friends hang out there.  Tom, who has had his truck parked here since Friday, snuck in and drove off in the truck to karaoke without saying a word to Little Man.  Little Man is at that stage where he thinks that his friends are the be all to end all.  That they are the "only" people who understand him and care about him.  Of course those nasty old parental things are too old to remember anything about being a teen and what it feels like.  It's a stage.  Little Man thinks that his friendships with his 379 friends from high school will last thru life.  And some of them will.  Some of those friendships will be for life.  But, in reality, most of them will fall along the wayside of life.  Time, circumstances, and differences in life choices will take the kids down different paths in life and they will probably not have much in common in a few years.  And I believe that Tom will be one of those friends who Little Man will be better off knowing in the long run.  I think Tom has some issues from his family situation that makes him fairly selfish and unable to be a very good friend.  Unfortunately, this is going to be a lesson that Little Man isn't going to like very much.  It's going to be a painful one for him to learn.  Hopefully, time and distance will make the transition a bit smoother.  

One other little tidbit.  Daughter posted pictures of her and SD on her myspace account.  SD looks rough.  And I don't mean that he looks like he needed a shower - although that would be true too.  I mean he looks like he's 60 years old.  His hair is gray.  He looks gaunt.  He's lost a lot of weight and not in a healthy looking way.  The man is 43 and looks 60.  He looks sick.  In the pictures, he looks yellow.  He told me last year that he was having liver problems.  I would believe it after seeing these pictures.  Of course, he had a beer in his hand so that just might explain the liver problems.  He's an idiot.  I've lost some weight too.  40 pounds as of yesterday at the weigh in.  But, in my case, I had it to lose.  He had some excess weight to take off too but in his case it's obvious that it's coming off due to drugs or ill health - not because he wanted to lose it.  The 2 of them were at a anniversary celebration together Saturday night.  They were both drunk.  Ugly drunk and acting stupid drunk.  Daughter managed to totally hurt April's feelings by first not recognizing her and then telling April that if she cared enough to know April she could have looked at her pictures on Aprils myspace.  As they are on each other friend's list.  Did I mention that daughter is lacking in any and all social graces?  If not, I should have.  The 2 of them will probably end up drinking and drugging themselves to death.  What a waste.

Well, off to the races.  I need to get the shed packed up into the trailer before it gets too hot.  Y'all take care!

Explanation

I was asked by a friend if knee replacement were not an option.  It is an option.  It's probably going to happen way sooner than I want.  My right knee needed replaced last year.  They would prefer that I stay in my own knees for as long as possible.  And I LIKE my own body.  I'm partial to these knees.  We've seen a lot of miles together.  

Going back:  The first time I had a joint issue, I was 18.  I slipped and fell and ripped 3 out of 4 ligaments in my ankle.  It took 3 surgeries and a tendon graft to put me back together.  A tendon graft is where they took a piece of one of my tendons and used it to re-form ligaments.  A few years later, I started having problems with my right wrist.  Diagnosis- carpal tunnel.  Then my discs in my back started going (I'm missing 8 at last count 3 years ago).  Then both wrists went.  The one that they had already done- plus the left one now too.  I'm considered a "chronic pain patient" by this time (at that time about 15 years).  I've lived in 3 states and probably seen 5-6 orthopedics plus primary care physicians.  My legs and back only work part of the time and I now I have a wheelchair.  But they're still treating me joint by joint.  I'm starting to think I'm NUTS because it seems that every year/every few months - something else has gone/is going  wrong.   Going back, the first time they told me that I might never walk unassisted again, I was 20.  Going into the 3rd surgery on that left ankle.  The repairs the Dr. kept doing kept falling out.  They said my remaining ligaments were too "shredded and porous"  to hold the repairs.  (The Dr. ended up drilling a hole thru my ankle bone to hold the sheath).  And as time has gone on- it's been a never-ending round.  I really did think I was going nuts- that it was all in my head.  

2 years ago a very good friend of mine, Cathy, needed me to go with her to her orthopedic appointment.  She said she'd found the most wonderful Dr.  Now, the appointment was in hickville, TX.  And I do mean HICKville.  But I met the Dr's asst and the Dr.  And he was a wonderfully nice man.  Very knowledgeable.  I was really impressed.  And at this point, my knees were getting so bad, the wheelchair and I were having a much closer relationship than I was comfortable with.  So, I made an appointment.  And I saw his asst., Troy, first.  And when I showed Troy my knees, his first words were "oh shit".  I joke you not.  So, Cathy and I sort of laughed and said- "suppose that's not very good huh?"  Well, Dr M came in next and we went thru my history.  And he said oh you have x.  Well, neither Cathy nor I had ANY idea what he was talking about.  So, as he explained it to us.  I have a genetic condition where my ligaments and tendons aren't attached to my bones correctly.  My knees not only bend the way they're supposed to- I can flex my muscles in my calves and they slide in and out of the joint sideways.  Yes, sideways.  It's really pretty cool.   So, Dr. M wants to know -"how the devil did I make it to my age with no one catching this with all the joint issues I've had".  Cue- dumb look from me.  How am I supposed to know?  I asked him "How many times have you ever set around the kitchen table with company saying "look what my knees do- can yours do this?"  So, he starts looking at my joints.  Not just my knees which is why I went to see him in the first place but a total examination.  Every joint he looks at as too much movement.  I hyper-extend everywhere.  Neat huh?  What this does is: it causes abnormal wear and tear on my joints due to their not formed correctly.  For example, my knee (which he said is about 90 years old) has holes worn in the bone from the bones rubbing against each other.  (that sideways movement I mentioned).  So, knee replacements will have to be done.  But Dr. M said that doing them with the way I'm put together will be "interesting".  And I'm over-weight.  About 80 pounds over-weight.  And for every pound you lose- it takes 4 pounds of pressure off you knees.  My poor knees could use to lose 300 pounds of pressure.  I don't even fit the criteria to have gastric by-pass without the additional health issues.  With them, they couldn't get me in fast enough.  Just joking.  I had to go thru a psychiatric evaluation, nutritionist, heart exam, throat scope, all kinds of stuff.   And my kids, my friends, my mom, Pami and Cal - all the folks who have lived thru 9 orthopedic surgeries with me have been very supportive.  (3 on the left ankle, right wrist 2x, left wrist 1x, both knees, right ankle.  Right ankle has a pig tendon holding it together because the ligament in it was gone.  Like they couldn't even find it.  I had ripped it in 1/2 and walked on it for so long that way that it was all shriveled up and .... well, gone).  

Will this fix the joint problem?  Absolutely not.  Like Dr. M said "I'm not put together right".  However, this will slow down the rate of wear and tear on my hips, ankles, knees, hopefully back.  Anything that's weight bearing.  I'm blessed.  They told me 21 years ago now that I might never walk un-assisted again.  God has given me 21 years worth of chasing kids and use of my body that I might not have had.  I'm just going to help him give me a few more years.  I have to be very careful about exercise.  Sit-ups.... won't work with my missing discs in my back.  PT for me has had to be water therapy.  I'm requesting that Pami and Cal put a nice size hot tub or small pool at the new house.  With Cal's MS- it will be good for him too.  I really do feel blessed to have been able to keep going as long as I have so far.  Raising  5 kids by myself for the last 10 years would have been even harder if I had had to be in the chair all the time instead of only sporadically.  And my boys- they know.  They always offer me an arm or a hand to help walk or to stand up.  There have been times when I've driven home and not been able to get out of the car- they'll run get the chair, get me a drink, settle me in.  Ms D- came to stay with me after the knee surgeries.  That way I had someone to help me get to the little girls room (and I couldn't ask my boys to do THAT!).  And they'll pull together for this too.  

I'm pretty open so feel free to ask any other questions.  God bless and keep smiling!

update

I have been home since around 10 AM this morning (although I slept when I got home for HOURS).  The procedure went quickly.  I wasn't even scheduled to go in till 9:30 and I was done, out, and awake in recovery by 9:20.  I got there around 8:20 this morning and they just moved it right along.  The procedure itself (EGD) takes about 20 min.  The nurse hit the IV on the first try which is a BIG plus in my book too.  Although I have a sore throat, I feel great now that I slept off all the anesthesia.  Little Man worked tonight and Ice Cube is out with his gf so it's just me and B at home.  

The Dr said that my throat looked great.  There is some evidence of the hiatal hernia returning but nothing major at this point.  He said there was a spot in my stomach that didn't look right so they took a biopsy of it.  It was red and he thought maybe signs of infection or ulcer- he never mentioned the 'cancer' word so I'm not worried.  

The boys have been great!  Ice Cube got his gf, Ms R, to pick LM and B up for school this morning.  LM asked at work and got a ride home tonight so that I wouldn't have to go get him at midnight.  B and I had frozen pizza for dinner and then he went to the neighbors to jump on the tramp and gave me peace time to read my blogs.  I picked the boys up from school today when I woke up and then stopped by Uncle and Aunts house.  They are just home from Candy Grandma's funeral.  Boy do I have stories to share from that fiasco maybe tomorrow when I'm more awake.  Their 6 year old grandson died today at 1:30.  Tomorrow would have been Matthews 7th birthday.  So 2 days after coming back from IN from Candy Grandma's funeral, they will be leaving Sunday morning to go bury their grandson. Please keep them in your prayers.  

Thank you so much for all your well wishes!  I can't tell you how much I appreciate them all.

Back to bed I go!

The procedure

A few years ago I slept sitting up.  I had such horrid heart burn, I couldn't lie down at night.  It was so bad, I would wake up gasping for air in the middle of the night while the acid went into my lungs.  After 1 such episode of waking up gasping for air I decided that my kids would probably appreciate it if I did something about this before they became orphans.  ;)  I stopped procrastinating and called a Dr that deals with stuff like that.  After some tests he told me that I had such bad ulcers in my throat that ....  well, lets just say that I've never had a Dr. yell at me like that before and we discussed this thing called "Barretts esophagus".  Basically, it means the acid mutilated the throat to the point that it could be a cancer risk.  Oops.  So, I had to go thru a surgery that fixed the hiatal (sp?) hernia and then wrapped part of the tummy around the esophagus so that the acid would stay where it belonged.  The procedure was called a "gastrointestinal fundiplication".  No more acid reflux.  No more waking up in the middle of the night gasping for air.  And I was in the hospital for fewer days than they predicted.  On the downside, I still have to have the scopes every couple of years to check and make sure that those "abnormal" cells in my throat that I mutilated by ignoring the problem for so long- haven't turned into cancer.  And I really didn't "ignore" it.  I was on previcid, zyrtec, rolaids by the truck load, watched my diet, etc...   And for the last 2 scopes, I've had these glowing reports from the Dr. about how great my throat looks and how nicely it's repairing itself.  

I should have had my last scope in December.  Yes, I know- I put it off again.  In my defense, they won't let me drive myself home from these things and finding a ride to my hovel in the country is a pain in the tail.  People object to bringing their cars down my gravel road.  It's rough on the car.  So, tomorrow I go.  I scheduled it.  I found a ride (I hope at least) and I will go get put to sleep and spend part of my day being used as a pincushion tomorrow.  B thinks he should stay home from school to go with (NOT) and I've already had that battle tonight.  So, for all my friends going thru rough times with their ED's - my thoughts will be with you even if I don't make it on to comment at my regular time.  I'm sure by tomorrow afternoon, I'll be up- jumping around cleaning up after boys and missing the 3 year old blondie I've been watching for the last 3 days.  She can't quite say "Amy" and it comes out "Meanie".  LOL  Her mother loves it when I keep her since she never cries when she comes here and the boys spoil her rotten.  

Best to you all.  Thanks to those of you who sent me the passwords I needed to stay up with your sites!

A