friends, family, and how they they SHOULD deal with a friend with chronic illness

  I kind of feel like a slacker lately, I just really haven't felt like working on this blog, but now I feel guilty,haha.
   Ok, in answer to the question, yes I got approved for disability, and I am now working on getting some kind of medical coverage.
  I'm going to talk a little bit about something Ive been thinking about, when it comes to chronic illness in general, and how your friends and family deal with it.
   First, in regards to friends, I know it it is hard to understand what I'm going through, hard to just get it. That's ok. Just please, be patient, I cant go do all the things I used to, and when I try, understand I cant keep going like I could before. That doesn't change WHO I am, it just changes how I do things.
I have come to really understand who are my real friends, who really cares, it isn't hard to see, just pay attention to who still calls once in awhile, or stops by to just hang out.
  We used to have a lot of bar-be-cues here, I make a really killer pork tenderloin that I am quite proud of, and LOTS of people would show up, eat some pork, have some drinks etc..lots of fun. However, I noticed that after I got sick, when I was no longer able to go hang out as often... people stopped showing up, the parties got smaller and smaller until we stopped having them all together. I'm a big boy, I can handle that, but nobody even shows up for the kids' birthday parties anymore, and that is sad.
  My wife and I have talked about this a few times, we know why nobody comes anymore. Its because I'm sick, dealing with my illnesses has pretty much become our lives. So, we don't have much else going on, nothing of interest to a healthy person anyways.
  I think there is more to it than that, though.. when I got sick, I almost died, (Ive said that before, but bear with me here) and I think that many friends don't want to face that. They don't want to think about it. I understand, neither do I. But get this, I don't want to just sit around and get all awareness-y either. If you ask, yes, Id be glad to tell you what you want to know, but that's not ALL i do, not the only thing Ive got going on, I am still the same nut ball I was before, I can still tell a dirty joke you've never heard before. I still have the same stories about crazy fun things we did growing up, like before. I am still the same person I always was.
  So, I guess my message to anyone that may have a fried with some kind of illness is this...have you stopped by lately? when was the last time you called, just to chat? I promise, your friend would love to hear from you. You could offer to stop by and hang out, watch a movie or some Monday night football...or whatever you USED to do together...It really does mean more than you may realize to your friend.
  that is pretty much all I have for now, but I do promise I will be more attentive to my blog,haha.
Remember, I have APS and EDS...they DON'T have me. 

REALLY?!? like, seriously?

I am really nervous today, and honestly pretty pissed off.
    Why am I nervous, you may ask..My disability hearing is in 6 hours. My attorney said that the only reason she can even fathom why I was denied at all in the first place has to be due to my age. That's good. It doesn't stop me from feeling a bit anxious though, if this doesn't go well, I'm screwed, I don't know how we will be able to get by.
    I am pissed off because SOMEONE came over to the house yesterday, while my wife and I were not home, and was let in by our teen aged son and his cousin..and this person went in my room and went through all of our stuff, threw my stuff from the closet onto the floor, which ripped the binding halfway off my FIRST PRINTING of TOM "effing" SAWYER! Needless to say, I am NOT in a good mood at all.
 Things are going pretty good around here lately,(other than the previous mentioned atrocity.)  I have been doing a lot of research and asking questions, trying to learn all I can about what is going on in my body. The three things I have been most troubled by lately are some serious issues with being tired and having trouble standing sometimes, also chorea. If you don't know what that is, I can explain in simple terms for you..my limbs hate me. They jerk and twitch, I can't control them sometimes, especially when I am tired..which is always, or trying to go to sleep at night..that's real fun, I have almost smacked my wife and myself in the face a couple of times, last night my arm decided it didn't like me anymore, and was going to try to rip itself free from my shoulder by jerking backwards and contorting painfully into a pretzel...WEEEEEEEEEEEE!
  I am going to post again today, after my hearing..let you know how I think it went..wish me luck!
  I have to remember.....I have APS, APS does NOT have me.
 

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!

Here I am

  I have to start by apologizing for not being on the ball, I have had alot going on in my life, not much of it very good. I will just have to kinda put it out there where I am, and what is going on right now in my life..my wife and I are seperated..probobly gonna divorce. I moved out, since I wasnt about to throw her out on the street, and I moved for now into my mothers house..seriously, this sux ass...I am 33 yrsld, and living with my mom again? oh well, it will only last untill my disability goes through, then I can get my own place.
  Ok, I guess I can give a basic description of whan I have been doing....lets see...watching tv..reading..sleeping, and staring off the back deck, it is quite a lovely view, but it is getting old real quick.
  That is basically it, my head hurtsI feel like crap, I am out of prednisone and don't know when I will have more. I guess I will have to try to keep this a little more up to date though, so look for more posts soon, and hopefully eter ones, cause I know this one , well, kinda sux, lol.
 I have to keep this in mind though, I have APS, APS does not have me.

A little about ME

Ok, I've told my APS story, but I feel like I should tell a little about the real me.  Who am I, where do I come from, and were am I going?
 I was born in San Luis Obispo, California, in 1979. My Dad was in the military, so we moved around a lot while I was young. I lived in San Diego, Long Beach, Ridgecrest, Vallejo and Camarillo. Then we moved back to the central coast. All this by the time I started kindergarten. I went to kindergarten and the first grade in Grover City Ca. (now it is called Grover Beach, to attract tourists).
I wont get into the details concerning why, but my parents divorced when I was right about 7. My mom remarried quickly, which seems to be how she operates now. We moved to Coquille Ore...I thought we were going to another country, I remember that now. Talk about culture shock, coming from a California beach town, to middle of nowhere Oregon...We didnt stay there long, I was glad, I hated that house and town.
We moved to Sheridan Or. next, stayed there untill my mom divorced that guy, and remarried someone else. He got a job on a dairy in another town, moving again. I was going into the 7th grade. Two years at that school, then another move..this time to Cusick Washington, on another dairy. Cusick is a smalll town in northeast Wa, right on the Idaho border, on a small Indian Reservation. We stayed there for one year. Moved to ANOTHER dairy on the other side of the mountain, near Chewelah Wa.
Stayed there until my mom got another divorce, and we had to move off the dairy, into town. I finished my Sr yr in Chewelah, then joined the Air Force. Before I went to basic, we moved even farther north, to Northport Wa. about 5 miles from the Canadian border. If you are keeping track, that is everywhere along the west coast from San Diego, to Northport, border to border.
 The Air Force did not work out for me, I was medically discharged after only a couple weeks. It did, however, really mess my mind up for a few months afterwards.
I moved with a good friend of mine, more like a brother, even to this day, to try to get our lives going in Seattle. We stayed at his dads house while we tried to find jobs and get an apartment. Yeah, that was never gonna happen, no way we could have been able to afford to do that, so I went back home. I did get an apartment close to Spokane Wa, with another friend, but that didnt work out very well. We found out, we really couldn't stand each other for very long.
During this time my mom decided to re-marry her secong husband again, and we moved back to California, Pismo Beach. I figured, why not, and me and my best friend Nick(the one I moved to Seattle with) packed our shit up and drove to Ca. We stayed in a camping trailor in my moms husbands driveway. It was a block and a half from the ocean. I started boogie boarding again, and then learned to surf. I also got mixed up with a rough crowd. That area had some bad problems with Mexican gangs, I got in a lot of fights, got jumped a few times, and had to carry a knife to protect myself....I would hang out wit other surfers, and skaters...partied A LOT, and really enjoyed all the pleasures you can find living in a tourist town, on the coast of California. Surf, sun, new girls on vacation every few days...good times. I also made a couple more real good friends, that I still talk to.
My family all decided, for some reason I never could figure out, to move to Arkansas, I stayed behind.
Living in Pismo is expensive, good jobs are hard to find, and life was real tough. I was drinking and fighting all the time. I was talked by my mom into coming out to Arkansas to check it out. She told me how great it was, cheap and easy to get a good job.. She was wrong, yes it was cheap, and easy to get a job, but not a good on. I worked at a chicken plant for two years, untill I started getting clots. I also got married, and had a little baby girl. Unfortunately, that marriage did not last, we were both too young.
It wound up being the best possible thing to leave her though. It opened an opportunity to meet the girl that would wind up being the woman of my dreams. We have now been together for almost ten yrs. Been married for almost five, and have six kids total between us.That pretty much sums up how I got where I am today.
Ok, now about my interests and hobbys. I have been into many different things over the years. I used to love going snowboarding when I lived in Washington, started skateboarding and surfing when I lived in Ca.
Got into BMX riding and then mountain biking later. I am now thinking about learning scuba, but I dont know if I will be able to. My lifelong passion has been art, I love to draw, and more recently painting. I am also thinking about trying sculpture. I have sold a painting, and really hope to paint some more, hopefully I can find a market for my art.
Well, that pretty much sums up my life up to now. I can't work, I am trying for disability, and basically stay at home all the time. I seriously have some cabin fever, since I am not used to staying at home.
I am a mmber of the APS foundation of Ameirca, their website is   http://www.apsfa.org/   and their support forum is at www.apsfaforum.com/
That pretty much tells it all, I may have APS, but APS does not have me.

Rough Times

It has been a rough few weeks in APS land lately. It seems like everyone I know is sick, having a stroke or dying...I really dont have much to say, just needed to put that out there to get it off my chest.

Why do I feel like this?

  I have really felt like crap for a few days now. I don't know what is going on with me, but I feel even more tired than normal, have had dizziness and tinnitus in both ears for about a week now.  I will be going to my doctor next week, hopefully. It has been since July since I have had a chance to see him, since I have no insurance.
 I need to update my Dr. as to how I am feeling lately, and hopefully he will be able to send something to my disability lawyer stating that he feels I am no longer able to work, since this should help my case immensely.
 I had a great idea as to what to do for my birthday this year, hope fully it goes well. I am planning to have a charity birthday party, and instead of receiving gifts, I would like everyone to give, whatever they can afford, to www.apsfa.org which is the Antiphospholipid Syndrome Foundation of America. I would wish that everyone could donate something, whether it be $1 or $100, whatever you can afford.

 My brain doesn't work anymore, its like a huge part of who I thought I was is gone. I can't think straight, or remember anything anymore. I can not spell, or sometimes even make a coherent sentence. I pass out, sometimes without warning. I get dizzy from standing, or at least really tired quickly. My personality has changed, as my wife has pointed out to me. I have also noticed that I have a temper now, which I never had before.
I don't really have much to say today, just felt like I needed to say something.

                       I have APS, APS does not have me.