28 April 2010

Major Pain

So, today is the third time I have dislocated my right shoulder. Okay, maybe not totally dislocated, but it is not in the right place.  I have had to "pop" it back in several times.

It really hurts tonight.  I popped it back in and then Max came out to get a hug.  I lifted him up to sit him on my lap and pulled it out again.  I cannot wince in pain when he is around.  It was completely my fault that it happened and if I even flinch, he feels like it was his fault.  He cries so hard when he thinks he hurt Mommy.  It breaks my heart.

Pain Killers and ice...that will be my life tonight.

20 April 2010

Just Tired

I have to say that I am just tired.  I feel like I could sleep more hours in the day than I want to be awake.  I sleep from 10 or so at night to 6 or so in the morning.  Then I take a nap in the afternoon with the kids, at least one hour.

So, I am wondering if I am tired because of my body or because of my mind.  It makes perfect sense that I would be tired.  My poor little body works overtime just to keep itself together.  It takes more effort for me to do everyday things.  Walking is difficult, not impossible, but not like a normal person.  It does take more for me to do all that most people do in a day.

I am wondering if I am just giving into that idea or if it really does take this much of a toll on me.  I am tired and I know that I am struggling with this diagnosis.  I feel some depression, so is it depression or is it physical?  Mental or physical?  I am so not sure.

I do get things done around the house and take time to play with my kids.  It is just not as much as I would like to do.  My dad and step-mom are coming here tomorrow.  I feel embarrassed about how my house looks.  It feels like it is a total mess to me.  I know that it is not, but I just don't have the energy to do anything more right now.  I am feeling limited.  I have never felt this way before.  Before, I knew that I was just lazy.  My house was a mess because I just did not feel like doing anything about it.  Maybe it bothers me now because I don't feel like I can do it all.

I am sure this makes no sense to all of you......I am not even sure it makes sense to me.  I am just feeling crappy and not sure what to do about it.  It is probably coming all to a head with me right now because Matt is out of town and I am getting ready for my parents to be here.  I have been on the brink of tears several times, but never actually gotten there.  Frustration is at an all time high.  I am trying to take my anti-anxiety pills.  Not sure how much longer that will happen.  I am taking my daily pills....all that stuff.  I am doing all right with the pain level, but on the brink with the mental side of it all.  I may just have to give in and take the pills.  I am struggling with this whole issue.  Just like I am struggling with it all.  I am trying not to give in to the idea that I am broken and tired or the idea that I need the extra help for my mental status.  Maybe help with one will help with the other.  I am just feeling so lost about it all.

There are other factors in my personal life that are making it all that much harder.  Have you all seen those commercials where the big C follows people around them....reminding them that they cannot run away from their choices?  That is what I am feeling this week.  A series of poor choices when I was 18 and 19 have come back to haunt me, if you will.  I guess not haunt me because it is not all bad, but it is heart wrenching.   I am sure that these emotions are not helping me keep things straight this week.

What I do know is that I do not want to not be here.  I don't want to quit on me, my husband, or my kids.  I love my life and all that God has blessed me with.  I have been given an abundance of blessings in so many ways.  I may have had the door closed physically, but there are so many windows open to that beautiful blue sky.

Wow, I am all over the place tonight.  I suppose that is why I have this though.  Sometimes I just need a place to express things....whether there are people out there reading this or not.  It is my space to vent.

13 April 2010

Long Day at the VA

Yesterday was one of the longest in my life.  I went to the VA in the AM to see occupational therapy.  That appt went great.  I got all my braces for my arms and hands fitted properly and was excited about it.

Now for the long part.  I have been having trouble breathing lately.  It has hurt all across my back to just breath. I have been shallow breathing for awhile.  So, I went up to the clinic where my arthritis doc is.  Well, that clinic was closed yesterday.  So, I was sent some where that I could not find.  I tried the PT advocate.  The office said open, but no one was there.  I waited 15 mins and gave up.  After talking to Matt we decided since I was having the problem right then, I should go to the ER so someone could see me while I was having the issue.

The ER at the VA is a total mess.  I was taken back right away because I was having breathing problems.  I went the back, but when they realized that I was not turning blue, I was left alone there for awhile.  I tried to tell them about my EDS, but no one would really listen.  So, I explained that I was having trouble breathing because there was horrible pain in my back each time I took a breath.  The doc finally listened to my chest and thought that maybe my lung was collapsing.  Really?  A collapsed lung?  So, I had an EKG, a chest xray and some labs done.  I tried to explain that I did not think that it was any of that.  I told them that I thought that possibly I had dislocated a vertebrae and it had gone back in place.  No one would listen.  Instead, they gave me a strong anti-inflammatory.  Seemed to work a bit, but not really.  So, I lie there a bit longer.  Finally, I decided it was time for me to go.  The pain had lessened and there were many others who needed to be seen too.  I was angry that no one listened to me....but I have to say that when they were going to send me home I finally got someone to listen about something.  They wanted to send me home with flexiril as a muscle relaxer.  I explained that I had taken that before for many years and it did not work for me.  So, they sent me home with something else.

So what they sent me home with was more of a neuro-blocker.  They called it a muscle relaxer, but really?  It never actually works on the muscles. Seems a bit odd to me.  Whatever, it kinda worked for a couple of hours, but the pain in my back returned.  Oh well, it happens.

I am just going to keep going.  Breathing is easier today.  I am happy about that.  The pain is just going to be part of my life.  I need to figure out how to live with it.  The meds I took yesterday worked for a little while without making me too stupid.  Maybe that will be a course for the future.  We will have to see.

I am feeling pretty pain free today.  Hopefully having spent some time in the ER will put this more on my record so people might start listening to me.

06 April 2010


We went out to see my in-laws for Easter weekend.  We had a really good time.  I put my hip out and I am still not sure if it is in or not.  It hurts to walk and you can feel something move when I walk if you press there.  Not sure what to do.  I am still mobile, so I am going to let it go and see if I can just work it out.

We went to Church in Holyoke for Easter.  It was awesome.  The sermon was about how Jesus died for us to free us from sin.  That we are blessed people no matter how hard things are here on earth, Jesus died for us all to be able to go to heaven.  Pastor touched my heart so much that I started sobbing in church.  Everyone says, "there is a reason for everything."  Most people think that it has to be some grand help everyone in the world thing, I think the reason for me is to bring me closer to God and my belief in him.  My mother-in-law gave me a wonderful Bible that has the explanation of each verse at the bottom of the page.  I am really excited to start my Bible studies.  I think I may have to get up a half hour early to start it.

My back is a little sore today from the 4 hour drive.  My hip hurts a bit.  And the kids are grumpy for little sleep, but the sun is shinning and we are all here together.  I am so blessed to have all these people who love me and support me.