Wednesday, August 1, 2012

Where am I headed?

The last time I posted I was going through a really rough spot in my life, like I really needed more of that. But there is a light at the end of that tunnel, my wife and I are trying to work things out, and I couldnt be happier!
 I do have more medical stuff I have been learning about that I have, Ehlers Danlos, for instance..When you have an autoimmune disorder, it usually comes with a "friend".
Ehlers Danlos, or EDS, is a connective tissue disorder, which means my body doesn't have the collagen it needs to hold joints together correctly..I am "double jointed" or to be more correct, have hyper mobility. Which sounds fun, and it is sometimes, but, not always..I have bad joints, they hurt so bad all the time, and I have many problems with hyperextending joints and dislocations..I am luckier than some though, some of my friends are worse than I am, some have more problems. Many are either in wheel chairs, or using a walker. I'm not there..yet.
   Which leads me to the question..where am I headed?
I keep having troubles with my health, its not getting better. That is very scary sometimes. I had to go to the ER today in fact because I couldn't breath, and my heart was beating so softly my wife could barely even feel it when she pressed her head against my chest. I couldn't think straight, and was very, very tired. I was given a shot of a fast acting steroid to help me quickly, but I think I need a higher dose of my normal medication for this problem.
 I have learned that this can lead to a lot of the problems I've had and didn't even realize were related...Moodiness(read that as bitchiness,lol), passing out,lethargy, breaking out in sweats to name a few.
 My hearingg to decide if I will get disability is in a few weeks, and to be honest, I am scared. I cant work, it only pushes me even faster to my grave, but I have to have something going to help with finances. I don't feel like a man right now because I cant do that by working anymore. It was a real blow to me when I came to the realization that I wouldn't be able to work any longer. That was a huge part of my identity, the provider..I took care of my wife, I worked hard and was on my way to a really good position for the company I was working for..All gone now. I am still a Daddy..and I love that..I am still a husband, and I love that as well..but part of me is missing, and Ill never get that back. I mourn for that part often.
So, where am I headed? Well, I don't know. I am here with my wife, my family ..where I belong..that lifts my spirits so much..but my health is such a question mark. I fight with all I have..sometimes it isn't very much, but I haven't given up, not yet.
I have APS, APS does NOT have me!


  1. I know exactly how you feel, Richard. It's been almost a year to the day since I had to leave my job, and I feel the pain of not being able to help provide financially every day because I handle our finances. I am so scared of filing for disability, but I know I need to.

    On top of that, I am constantly reminded of how lacking I am as a mother. I have three boys, one with special needs, who need me, and some days it's a fight to give them even the basic necessities. But there is no one to help. And there is no money to hire any help. Being a disabled stay-at-home parent is no easy task, as you well know.

    I'm glad we have each other in our online community to lean on. It would be much more difficult to do this alone. I'm praying hard for success at your hearing.

  2. Fight like hell man. Some how it all works out. Not always like we want it to.

  3. Oh Richard. Don't you have ANY good news? It seems to be one thing after another with you bro. But I have read enough of your postings to know you are a fighter. There is good group on FB for APS Come by and bs with us. Take care of yourself buddy. -Carson.