31 March 2010


Hello world.  I am so tired today.  It has been a long weekend and beginning of the week.  We spent the weekend doing spring cleaning.  I spent most of the weekend on my feet...it hurt my knees and back.  I went to the park with the boys yesterday for 2 hours.

I am paying for all of that today.  Last night I hardly slept because my legs were hurting so badly.  It was a horrible ache all night.  I woke up at 1:30 and never went back to sleep.  Rolling around, trying to get comfy, made for a long night.

I have to admit, though, that my life has changed a lot since my diagnosis. I have realized what is important in my life and what is not.  I am over all the petty things that make people so angry.  I am finally living by my dad's words.....If you are not going to be upset about it tomorrow, why be upset about it today.  I am just more calm about things.  Well, not about the kids being pains, but everything else.  I have been trying to be better with them too.

I am sitting here in pain today, but enjoying watching the kids play with the trains on the floor.

26 March 2010

Paying for It

Explicative, explicative.  Pain has enveloped me today.  I had a hip pain last night and it was bad.  I used ice and managed to get it to not hurt so bad.  (I am trying not to take pain meds.)  I hardly slept last night when the pain started in my back on the left side (not the normal side)
I do believe that the pain has a direct correlation to the time I played outside yesterday.  I think it waited because I was busy all day yesterday.  I think the pain started when I slowed down.  I still have not taken any pain meds. I am home with the kids and cannot take any.  I try to be awake and alert for them, but today may end up different.  I just want to curl up and die right now. I have not had this much pain in a long time.

25 March 2010


Yeah!  The boys and I went out and played in the snow this morning.  I did not hurt anything and we had a wonderful time.  It was my littlest one's first time to play in the snow and it was amazing.  The snow was hard this morning and even though I did not get hurt, both of the boys did.  Max got a bloody lip, but did not want to stop playing.  Ben got hit in the face, but we did not realize he was hurt until we got inside.  Now he has a black eye.  We all have so much fun, I cannot wait until the next snow day.

23 March 2010

Dang Thumb

Crap, crap, crap!!!!  I am so frustrated with my right thumb.  It just seems to get disjointed so often.  I was putting Max to bed and playing with him.  We have tickle wars before bed....I did something and dislocated my thumb right then and there.  I jumped away and Max freaked out.  He feels so bad when I get hurt playing with him.  He feels like it is his fault.  I feel so bad.....I wish I could explain it better to him.  It is not his fault at all.  Maybe I should not play so hard with him, but that does not seem fair either.  I am going to play with my boys no matter what, so I am just going to have to not react so much when I do get hurt.

My thumb still hurts pretty good..  It is the second joint back and that one is hard to reset by myself.  Matt is at an internet thing.  I am going to just have to wait.  I am going to have to wear my cast splint tomorrow.  We have a play date tomorrow and I am not going to keep my boys home, no matter what happens.  They deserve to live a life and not have to be stuck at home or miss out because I am hurting all the time.

I know that I am rambling, but that is how my brain is working tonight.  I just feel awful.....not so much for myself, but for those around me who have to deal with my situation.  It is my alignment, not their's.  I wish that they did not have to feel the repercussions from it.  My little boys know that Mommy is fragile and they try to be careful, but they are little boys.  We play and I love it, but sometimes I get hurt.  Matt is afraid to touch me sometimes, for fear of hurting me in some way.  It is hard to handle.......I am fragile and things happen, but do I stop living and doing the things I love so I don't hurt myself.  Or, do I keep going, enjoy what I can and deal with the consequences.  At this point I am willing to give all I can and enjoy every minute I can now....I will never get this time back with my family.  My boys will only be little once.  As they grow, I know they will not be so physical playing with me.  So, enjoy it now is my new philosophy.  I will deal with the rest later.

Pain in my right hand is pretty bad.  I also tweaked my knee earlier...not complaining, just stating facts these days.  No more reason to complain about it.  It is part of my life and I am okay with that.  I am just going to state facts the way they are.  I hurt and that is my life.  No sense in dwelling on it.

22 March 2010

No travel alone

My husband and I have been talking about me traveling home with the boys.  I live in Co and would have to travel to Il.  Matt cannot take a lot of time off during the summer because it is his busy time at work.

I have thought about driving.  That would be an 18 hour trip...I would have to stop one night, at least.  We talked about taking the train....that too would be an 18 hour trip, but straight through and no driving.  We talked about flying...total travel from door to door, most likely 8-9 hours. So, having considered all of these things, I have decided not to travel home.  I cannot imagine being with my 2 and 4 yr olds and having something happen on any of those trips.   Can you imagine me with a dislocated hip or shoulder and two small kids.  No one there to help me fix it??? and having them look at me all broken.  It does not sound like a good idea to me.

Maybe air travel with the boys would be more reasonable if I was in a wheel chair.  At least at that point they usually let someone go to the gate with you....or there would be a sky cap to help.  Just a thought.  We will have to see how it all works out.

I am still waiting on most of my adaptive gear.  It has been one week, but I am hoping to get some of it soon. I would give just about anything for the parafin bath tonight.  My hands hurt a bit. I would like some of the things I could use in the kitchen.  I do some cooking yesterday and thought about how nice it would have been to have some of the things they are getting for me.

I am feeling pretty upbeat despite all the things that I have to think about before I do anything...ie traveling.  I am getting out of the house at least every other day now, and not just to take Max to school.  I went to my very good friend Joanna's for a scrap-shopping thing, then went to scrapbooking crop at Cynthia's on Saturday.  Tomorrow we are going to the library....it is Max's spring break so they have fun things going on.  Wednesday we have another library trip and then a fun playdate at Joanna's with her two little girls.  I cannot wait....Max really enjoys them and Ben has not seen them in a long time.

I am still doing my Close To My Heart stamping workshops every month.  I am also going to start doing a card work shop quarterly.  I am looking forward to that in a couple of weeks.

We will be traveling to Holyoke, 4 hours from here, for Easter.  I am very excited about that.  I know that our plans have been moved back some, but I am still looking forward to looking at some houses out there.  I love visiting out there.  My in-laws are so wonderful.  They always make staying there so much fun.  I am looking forward to all the good cooking..... Rita is great.  I am also looking forward to the egg coloring and egg hunt.  I love visiting with our friends Luke and Shannon along with their girls.  I cannot wait to actually move out there and not have to make the four hour drive.  It is painful for me....sometimes we stop and I get to walk and sometimes we just drive straight through (depends on the trip).

All is well in the land of Charlee....hope everyone else is doing well.


It is a Monday morning and things are going fairly well.  I have some pain in my hip, but it is not bad.  I just cannot get over how much pain there is.  I have decided not to use my pain pills unless I really really have to do it.  They cause me to be sick to my stomach and groggy.  I miss my family when that happens.

My boys are still the light of my life.  They make it all worth the effort these days.  My husband is such a great support and I cannot thank him enough for all he does.

There are so many things to think about now....a little stressed out now....will post more later.

19 March 2010

Cold day

It is a cold day here.  The snow has finally started, but the front come in late last night.  I could feel every degree and change in the barometer.  I do not have arthritis so much.....but it sure feels like it.  I am wondering if I do have some sort of arthritis????  I suppose it is totally possible.  Since the ligaments are stretched out the joints do grind upon each other.  That could make the arthritis pain, I guess.

I am hoping to stay inside today......

17 March 2010

Playground Mishap

I took the little ones to the playground today.  We were having such a great time.  It was fun fun fun.  That is until Ben started to fall off the side.  I went to grab him and out went my shoulder.  Yep, dislocated my shoulder right there at the playground.  Think I may have scared a few parents and kids too when I yelled.  I managed to round up the boys and get them to the car.  I was able to get them buckled and get home not using my right shoulder/arm.

I managed to get us all home and decided I wanted to take some pain meds.  I cannot get my bottle open though.  I decided to wait for Matt to get home to get meds.....not sure I want to teach him to open med bottles yet.

I called Matt and he is going to pick up dinner for us.  Today is our anniversary....sucks, I am going to have to take some pain meds and end up in bed.  I am really sad about that.

I am not sure I totally got my shoulder back in properly.  I am still in pain and I am not sure how to make sure it is in all the way.  Not even sure how to do it without making more pain.  Going to wait for Matt to get here, eat something and take pain meds before I try to have Matt pop it back in again.

Oh well....that is part of how this all goes.  I just keep in mind that I was taking care of my babies.....I actually had a thought the other night about the rest of my life.  Actually it was a whole series of thoughts about the future.  I have lived a full life already and I am in no way giving up, but I will do all I can for my kids.  I want to protect them and take care of them.  The pain to me is just how it works....obviously I will not be going out of my way to hurt myself, but I am not going to let them get hurt because I am protecting myself.

Pain Level:  TOO MUCH

16 March 2010

Extra Stuff

Wow, I actually made it to the Occupational Therapist yesterday.  I was so surprised at all the things that had for me.

First, they were able to give me special braces for each of my fingers.  They are funny looking rings to help keep the joints from dislocating.  They also made a cast like splint for my right hand to keep my thumb in place.  I am also getting 2 neoprene braces for each hand...those had to be ordered.

I was totally amazed at all the things that were ordered for me.....a number of assistive devices.  It is awesome.  I am going to be getting a parafin bath.....the heat from it is suppose to help with the pain in my hands.  It is also going to make them nice and soft, just like going to the spa.

The guy ordered an automatic jar opener...it is huge...guess it is worth it.  I have lost a bit of use of my right hand.  I am also getting a nifty little tool that will open soda cans, pop bottles, and cans.   I am getting a number of spongy things for pens and pencils to make them bigger for me to hold.  I also got some tubing type stuff to put onto silverware to make it thicker.

A hair dryer holder....it is suppose to hold up my hair dryer so I don't have to use my arms to do it.  Might be nice on my shoulder....we will see how it works.

Some sort of device to hold books open while I read...that way I am not stressing my thumbs.

A strange looking thing that slides across the counter so I don'.t have to lift full pots to get them to the sink.

Thicker tweezers and nail clippers.

I am sure there is more, but I cannot think of all of it right now.

Yeah, someone is at least helping my situation be easier....not better, but easier.

11 March 2010


Tonight I am sitting here, happy and content. Unfortunately, I did dislocate my thumb today.  I picked Ben up and was playing.  I had him in my arms and pretended to drop him....and just as I caught him......ouch.  Popped it back in, but it still hurts.

Overall, today was a good day.  I managed to get the walmart shopping done.  I even went back again for shoes for Ben....Max got some the first time, but then we realized Ben needed some too. We managed to get all the grocery shopping done too.  Yeah.

Ben managed to throw up all over the house again tonight.  I am not sure what is going on with him.  He did not really want to eat and we tried to make him eat anyway.  I should know better.  He always seems to throw up after we force him to eat at night.  Not sure what is going on with him.

Tomorrow is a stay at home day...possible a pj day.  We like those days.   We most likely will be downstairs.  I have to get the house cleaned up for my stamp club this weekend.  I also need to finish the 2nd page for this meeting.  I am really excited about it.


Today is another day.  I woke up pain free.  That is so awesome.  I slept fairly well, I guess.  Again, I was on the couch.  That makes such a difference.  I am not sure why, maybe because it is so soft?

This is on the same thought....promise.  Matt and I were thinking about going to Fl to see my parents.  Southwest now flies into a city near there....$139 per person one way...so, for four of us, it was about $1200.  Matt and I talked it over and as much as I would like to see my family, a new mattress would be better.  It would be so nice to be able to sleep in the same bed as my husband again.  So, we are going to forgo the trip to FL and save that money for a new mattress.  It is not like we had the money for the tickets right now anyway.  We will have to save for it still.

Not much planned in my world today....play with the kids this morning....school for Max and then the grocery store.  Pizza for dinner so I don't have to cook.  Then survivor tonight.....that is all.

10 March 2010

Just Don't know

I am sitting here alone tonight....boys are in bed, Matt is at a computer thing and I am left to think.  Not a good thing for me lately.  Really, I am trying to be positive and on a daily basis I am generally happy.

But here, I can admit that I am still so not so sure about all of this.  I know that I am going to be around for all the good times with my family, what I am not sure about is what condition I will be in to enjoy those things.

This week has been rough and it is only Wednesday.  Our family ended up with the stomach flu....fun....it was all that they make it out to be in the movies when Mom is sick and still taking care of the puking kids.  My husband was so great Monday to let me stay in the bed most of the day.  I ended up there through the night.  I awoke at 3 AM hardly able to move.  My back was in so much pain that I could not move.  Matt had to get up and move me to the couch. (It is more comfortable there)  In the morning I was still drugged and in pain, so Matt moved me to the basement on the Futon.  I think the couch and futon are nice because they are extremely soft and have something to lean against.  That is beside the point though.  I was still in pain when I finally came around at Noon.  That made me sad.  Just plain sad....I have been wondering if it is going to be like that form now on for me.  Am I going to go through these episodes of pain, take the drugs and be out of it for a couple of days?

I am still in the infancy of my understanding and handling this condition....what I am hoping for is that some day I can come to terms with this and have a plan.  God is out there and put this on me for a reason.....I need to figure out what that reason is....once I do that, I can use it to His work.  I believe there is a reason for this....it is not a punishment, but a blessing on some other level.  I have to say that it has made me appreciate the things in life I can do right now.  I love being around my kids, spending time with my husband and just having a pain free day.

I pray that God will show me the way and I will take the time to see what he wants for me to do.

What Is Next

I am not entirely sure what is next.  I know that the VA has pretty much washed their hands of me.  Unfortunately, that is my healthcare right now.  I am okay with the fact that there is not going to be any huge jumps forward in my condition.  I have accepted that. 

What I cannot accept is that there is so little information out there and nothing helpful out there.  I have decided that this must be my calling in all of this.  I am going to start putting together information about EDS and what you can do for it all in one place.  I will also put info about what others have tried and what has worked for them.  Maybe even a list of good docs?  This is just my dream right now...hopefully I will be able to afford to run a website one day and have it help everyone.  Money is too tight right now, but we shall see. 

06 March 2010


It is the beginning of what promises to be another long day.  Matt has wrestling today....all day.  I am not feeling well.....my throat hurts, head is stuffy and my chest is getting filled up too.

Good news is that nothing else really hurts today.  I am hoping to get my scrap page done for next weeks stamp club.  It makes me happy to have these type of things to do.

05 March 2010


I went for my brace fittings today....that was a joke.  We will have to see how they turn out.  The guys did not really seem to know what he was doing....the lifts might turn out well.  He did take a full impression of my foot.

My knees are another story....he took one measurement. That was it.  I am hoping it gets done properly.

The SI belt will be interesting too....he went on google to find one.


04 March 2010


I am feeling better tonight, maybe not physically, but mentally.  I am happy....I have just found myself.  I realize that I cannot let this stop me from living my life.

I am going to keep playing with my kids and enjoy every moment of it.  I cannot live my life afraid of dislocating something.  It is bound to happen no matter what I do, so why not take the time I have to enjoy life.  I love my kids and I don't want them to feel like their mom is missing in their lives.  I can do things, it hurts and I could get hurt even more, but I am willing to take that chance to "live" my life.

I hate to admit this to anyone outside of my family, but I have slept on the couch for a little over a month now.  It has just been more comfortable than sleeping in the bed.  I have been able to sleep a little better, without as much pain, but it is lonely.  I miss my husband.  I miss being in the same bed with him.  I have decided that I am going to take a pain pill before bed and then again when I get up.  It will be nice to be in the same bed with my hubby.  I am looking forward to it.  I have no problem taking the meds when I need them.  I was trying to not use them, but now that I know nothing is going to change.  I am going to use the meds to make my life better.  I can do that.

So, I spent the day playing with my boys, not dwelling on the bad.  I am happy, sore, but happy.  The kids are in bed, survivor is on.....the only way to make this better would be to have Matt home and not at some meeting.

I will continue to post my pain level....it is kind of my outlet.  I can whine here and try not to whine at other places in my life.  Maybe I should get one of those purple bracelets that were so popular about not complaining.

Pain Level:  4-5 right SI joint, right shoulder and thumbs.


  I has been a long couple of weeks.  Everyone is feeling better now and that makes me happy.  Kids are being kids and driving me nuts sometimes, but I would not trade them for the world.

I went to see Dr. Rose yesterday and nothing good came of it.  The visit was actually kind of depressing.  I found out that the PT I have been doing is actually doing more harm than good.  My SI joint is worse than it has ever been.  The ligament is so stretched out that it will never be normal again.  Sucks.  She also hurt me by stretching the SI joint to see how much damage has been done.  PAINFUL.  I am still not pain free this morning.

I asked her if I could see a geneticist.  There is not one on the VA payroll.....go figure.  So, now  I have to wait to see if they will out source such a thing.  I am guessing no.  We will just have to wait and see.  I am hoping they do.....it would be nice to see someone who has seen EDS in a person before and not just read about it.

My meds have not been changed, just increased.  The night pain in my legs is the worst.  She told me to just take my sleeping pill earlier in the evening so by the time I am ready to sleep that I am sleepy enough to go right to sleep and not feel the pain.  Ha, we will have to see if that works....I don't believe it.

I am back to where I started with no hope of improvement.....it is a bit depressing.  I am trying hard to get myself in a better frame of mind......I am not sure what it will take.  I think I need to sulk and get it out.  I am resigning myself to the way this will be.   I feel better already, now that I have written about it.  Seems so silly to be upset about pain when there are so many others who are worse off than I am.

Having said that there are those worse off than I am, I am still going to take advantage of all that is available to me.  I have filed for more compensation from the Army (they made my condition worse) and I filed for Social Security disability.  I know it sounds funny.....I am 34 years old and filing for Social Security.  It still bothers me a little, but the reality is that with the pain and the ligaments stretching more each day, I will never be able to work a real job again.  So, with that said, I filed and we will see what happens.  I would be nice to be able to provide for my family even though I cannot work to do it.  I saw my counselor the other day and she reminded me that I am a person with a disability and I deserve it.  (It is still taking some getting use to)

Friday I go to get my knee braces fitted along with a SI belt and shoe inserts.  The knee braces will help to keep my knees in place, the SI belt too.  The SI belt should prevent the joint and ligament from getting worse.  It is kinda like wearing a gurtle for the rest of my life.  At least it will be trimming and I will always look skinny.  The shoe inserts are to make sure that my back is supported properly.  Hopefully these things will help.

Monday I go to Occupational Therapy for arm and hand braces.  I talked to the guy while I was there yesterday and he is talking fingers, hands, wrists and elbows.  He asked how much mobility I need....I lauged and said that I have a 2 and 4 year old....what do you think?  So, he is going to try to give me some support with mobility for the day time and then braces it all for the night (I sleep with my arms all curled up).  Matt says I seem to hurt myself more at night than during the day.  I guess that is true since I have no control over what I do at night.  At least during the day I can be careful.  Good part of all of it is that it is all removable.  I like that idea.  I can use them all when I need them and not use them when I want to do something.  Example, if I want to play with the boys I can take them off to play......probably not a good example since that is when I should be using them.  We will have to see how it all works out.  Sounds like I am going to be robo-mom......LOL.

Pain Level: 4 -my SI joint is still sore from being manipulated yesterday.