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.

Men & APS (Antiphospholipid Antibody Syndrome): A New Year !

Men & APS (Antiphospholipid Antibody Syndrome): A New Year !

Life is....

 Life is so different to me now...I get it. I understand how fragile it can be. Sometimes, it isn't so clear, it all goes by without much thought. I get it.
 I cherish the time I have been given, time for my wife, time for my chidren. Time for me. Everything can be gone in the twinkle of eye, or it can drag on and on...it just depends on your outlook.
 I don't know how long I have, but I have never tried to convince myself I will live to be 100. APS will take me. I will fight it, but it will win eventually. It will take me when I don't have the strength to fight back.
 Right now, I can fight back, right now I have the strength. But I can not promise that tomorrow. I can not fight forever. I can promise I will help anyone that I can in the same fight as me. With information, support, a hug or smile. I know why I am here, on this Earth, to spread awareness about APS and help those suffering silently to cope. I will not stay silent. I will not just lie here and die. I will not follow a doctors word blindly.
 I am not crazy, it is not in my head. APS is real, and so are the symptoms..and not just clotting and miscarriages! APS is not just a womens disease. Women are diagnosed more often, but only because miscarriages is one of the only ways any doctor even thinks of checking for APS. Men have it, but we die before we get diagnosed. CAPS is mostly diagnosed during autopsy after multiple organ failure for no know reason.
 I will fight, untill my last breathe.
                    I have APS, APS does not have me.

Facing my own mortality

  I got my first clot around the age of 22, that was in 2001. No doctors could figure out why an otherwise healthy young man would be clotting without apparent reason.  So, I was put on coumadin, and told it might be life-long.
  Nine years go by, still no ideas on why I clot.  I keep taking coumadin, and try to get my blood checked like I am supposed to.  Then one day, something goes wrong.  I am admitted to the E.R. with extreme pain in my hip. 
  Many tests are performed; X-Rays, MRIs, etc..it turns out that I am bleeding internally, but still clotting at the same time. Nobody has heard if this happening before.  They give me large doses of vitamin K to reduce my Inr (international normalized ratio), how "thin" my blood is, in hopes of stopping the bleed. This is what should work for a normal person.  I am about to find out that I am not normal.  Morphine is administered every four hours through my I.V. but it doesn't really help, the pain was so bad.  I begged my nurse to just give me enough to knock me out, "Please!", I begged.  She didn't, but what she did do was start hiding, and not giving me my pain meds on time.  She told my mother that I was a junky just looking for some meds. 
  I am not a junky, never have been. As a matter of fact, I avoid taking pain medication for anything. When I am given pain med. for something, I don't hardly use any, if at all.  I don't want to be one of those people that needs horse tranquilizers to get rid of a little head-ache.
  My mother called my wife, she was shuffling the kids between babysitters so she could stay by my side, and told her what was said.  So, my wife called my room and asked me how I was doing. I told her, "Something is wrong, Baby."  She immediately called my Dr. at his office and told him what I said, he said "Oh Dear!" and dropped the phone.  He was just getting to work, it was early, so he cancelled his morning appointments and rushed over to check on me.
  When Dr. Jeff (wont use his last name, but he is my hero) arrived in my room, that nurse was nowhere to be found.  He had to track her down.  When she was brought into my room, he kinda patted my lag, and asked how I was doing, and what my pain level was right then.  I told him it was about a 4 or 5.  He then pointed out my blood pressure and heart rate to that damned nurse, then told her(I am not quoting, but this is how I heard it, sorry for the language) "This guy is in pain, his blood pressure is sky high and he says his pain is only a 4 or 5?  I know him, he has been my patient for years, he is not a pill head.  His pain tolerance is incredible, he's no p*ssy. Get him his pain medication, NOW!" After she returned, they had a little talk outside my room, with the head nurse on duty at the time, and he forbid her from being in my room, ever.
  I hope she got fired.
  Since the morphine wasn't doing the trick, they decided to put me on Dilodid, that did the trick!  I could sleep now. 
  After more tests, and consulting with other doctors from all over the country, or so I've been told, they figured out what was going on with me.  The clotting, the bleeding, multiple organs affected...I had APS. Catastrophic APS to be more exact.  I didn't know the diagnosis yet, because I had already fell into a coma.
  I don't know how long I was out, but I remember waking up, sort of, with my bed tilted, feet up, while a doctor was doing something to my neck, it hurt.  I asked him if I was supposed to feel it, he said it was ok, and he was almost done. He was putting a port in my neck for chemo and plasma pheresis. It turns out that this was the second time they had put one in, the first time it wouldn't work, so they put it on the other side instead.  I passed back out.
   I don't know how long it was, time is a blur from then.  My wife told me that Dr. Jeff actually stayed by my side while I was in ICU all night, a couple of times.  He had just gotten married, and he stayed with me overnight, that, my friends, is a good Doctor!
  I remember being in a lot of pain.  I begged God to take me, let me die.  I was ready, really.  God spoke to me, told me that it was not time for me to go. I had to take care of my wife, my children. "Go to them" the voice said.
  I woke up, and between my feet, taped to the footboard by my sister in law, was a picture recently taken, of my three youngest kids.  I still get choked up telling this story.
  I started getting better, and was placed back into a normal room again. I have been in the hospital for over a month. A couple days later, I was put on a Medi-Flight to Rochester, Minnesota, the Mayo clinic.
  I stayed there for about another month, slowly getting better.  I lost a lot of strength, and weight. I didn't have spare weight to lose, I started out at about 200 lbs. when I went to the E.R. and when I left Mayo clinic, I weighed about 145.   I am 6'3", that is thin.
  I went home at the end of May, 2010.  My wife and I rented a car, she drove, a couple days after my release.  Time to go home. 
  After getting home, I was still in rough shape, I couldn’t walk unassisted, so my father in law gave me a cane.  I was so tired, and would get winded just getting a drink from the kitchen. My wife thought it was just depression at first, until she got a good look at me when I had tried to get a drink. I had asked her for one, but she told me I had to get up, I couldn't lay around and give up.  Well, when she saw me do that, and my lips turned blue, she figured out I wasn't being lazy.  She  called Dr. Jeff right then, and I was squeezed in an hour later. When he saw me, he sent me straight back to the hospital. Great.
  Well, after some more tests and monitoring, it was deduced that my adrenal glands had failed.  Nice.
  I got better, slowly. I went back to work, I am bull-headed like that, against everyones advice. I had to take care of my family!  Bad decision.  I wind up getting sick a lot, going back to the hospital like 15 more times over the next year, until, finally, I get fired.  Now I am trying for disability.
  That’s where I am right now.  Waiting.
 I have basically known since I was 22 years old how I was gonna die.  I will be 33 in February.  I know I shouldn't be alive right now, hell, most don't live through what I survived.  But I did, I am alive.  So I think God for the gift He gave me, one more day.
                        I have APS, APS does not have me.