Gratitude

Sometimes, I get so very caught up in my own world.  I feel like I am swallowed by own self pity.  I think it might be part of my life long belief in fairness.  I, since I was a kid, always focused on what is "fair."  I would wallow and obsess about "that's not fair!"  I found myself falling to these weakness thru my adult life.  Sometimes, I would go tilting after windmills over the trivial causes thinking that if I could make something fair life would be better for me and for those around me.  Sometimes this would make me nuts and other times, it could give me a feeling of peace.
  This past few years, I keep asking..."why me?  oh, poor me.."  I thought it was not fair.  What had I done to deserve this illness.  Was I really ill?  What had happened to me and why?  I guess this petty thought  kept running around in my head and heart.  It did not give comfort or give relief.  I still find myself in my own trap. 
  Well, in the past month, I have learned that as sick as I feel, compared to my fellow workers in the National Guard, I am much better off.  I have people fighting for me right now that are sicker and facing a more dreaded future than I do.  I just today was reading about my friend, co-worker, and fellow guardsman, Jim.  His wife keeps a blog about his ordeal with cancer.  He has been sick on and off with Cancer since 05.  Now he is literally fighting for his life in the ICU.  He wife and children keep giving him love and encouraging his fight all the time.  He is really going thru hell... but you know what he said to me last time I saw him last year?  He said he felt lucky that he was not feeling like I was all the time. 
  Another new friend and fellow Guardsman, also is fighting her illness.  She is struggling with her symptoms and still doing her best with two young children and normal busy life of a wife and home keeper.   But with all of this, she finds it in her heart to fight for not just her health but over a dozen other people that we believe are ill from something at work.  She is relentless and keeps pushing so hard to get the doors to open to anyone to listen to us.  She has only given and keeps fighting for us all.
  I guess seeing these people that are in a much more difficult situation and continuing the fight makes me feel grateful.  I know I am luckier than many people.  I have children that love me and help me all  the time.  I have parents and siblings that offer encouragement all the time, too.  I have leaders that try to give me purpose.  I have so many people trying to help me.  I look at where I am and what I have, I can not help but feel grateful.  I am grateful for what I have and that includes the courage I see in my friends.

Another week gone by

I knew I would have trouble filling a blog slash journal for very long.  I feel like most of what happens to me is so mundane and boring.  I do not think that anyone could really be interested in what is happening to me and my life.  However, I have gotten a couple people that have given me some feed back and want me to continue.  I will try, but if you are bored with my ranting,... I warned you. 

  Along with all my stuff going on at my former work site, I have two great kids.  I know everyone thinks they have great kids, but I am lucky with mine.  They both have good hearts.  I think they are smart, too smart really.  They seem to pick up some of my bad habits and it is hard to get after them when they do what I do.  I enjoy teaching them and trying to get them to learn lessons without having to go thru the problem themselves.  Sometimes, I might expose them to stuff over their head or that they should be sheltered from, but I believe that the world is something that children need to be aware of so they are careful, but not afraid.  Sometimes, it bites me in the butt.  My son asked me what birth control was this week.  11 years old.  If I had hair, I would go gray after realizing what is happening this him in his world.  We talked about it and then he asked me what a condom was.  (More gray hair?)  I guess it is not that shocking... I had my birds and bees talk after 3rd grade before going to a camp.  Mom wanted me to know about it before I heard about it all from the older boys.  I still didn't know all the details, but I wasn't as surprised as some boys.
  My daughter and I made an agreement last summer no more growing up.  She could have her 7th birthday and then we were going to stop and just stay the same from now on.  I am sure it is in defiance she has grown about 2 inches since our agreement.  She can be stubborn and I have no idea where she gets that from.  My children are my anchor.  They keep me tethered to this earth.  They are everything to me.  Before I got ill, I was trying to do an "adventure" each week with my kids.  We would go on short hikes on the trails above the city, or go out to the lake, we went to movies and we went to see some natural Bald Eagles living near the Great Salt Lake.  Sometimes, it was fun, sometimes, it was boring, but we did something every week together. 
  Why share this stuff?  Because I can not longer do those things.  Before I got ill, we had a fun life.  Camping and travel, all kinds of stuff.   Now, I am trapped each day in my home.  The impact on them is amazing.  They entertain themselves when they are with me, but it is not the same.  While I have gained weight from my rounds of steroids and inactivity, I have seen my son do the same.  In many ways, I do not care for my daughter as much as her big brother does.  I talk to my kids all the time, but when I am so tired that sometimes, I can not even play a game of chess, I feel like I am letting them both down very much.  I keep thinking that I can just push myself thru this.  I have done that so many times in my life.... just put your head down and walk into the wind, but this is something else.

  Also, speaking of social life, I live a almost completely isolated life.  I used to be able to do almost anything for myself.  Now, I do not travel.  I do not go see my family like I used to.  I do not trust myself driving.  I tend to fall asleep when I get behind the wheel... I would not travel more than 20-30 minutes. (My whole family lives 3 hours away.)  I do not meet new people.  I do not have a chance to talk to other adults on a regular basis.  The most simple things are even more difficult to do.  I used to just slip on a jacket and walk around the mall on Sundays to do people watching... now, every time I leave my home, I feel like I am packing for war.  I am always tired... I do almost nothing.  I do not go see my mother when she is ill.  I do not pop in to visit family when we decide to run away. I would like to have a simple family life one day.  I would like to find someone to share my life with again, but I do not see that ever happening with what has happened to me.  I hate myself, so I do not see how someone else would ever want to be a part of my life... I just sit here and do what the doctors have told me... wait.
  Anyway... that is some of what has happened to me and my family.   I am going to put a few pictures of my brood here. Some before and some after...

Another Day, another doctor.

I saw another doctor today at Hill Air Force Base.  I like this guy.  He asked questions and looked at my records.  He wanted to make sure I understood my meds and what they are doing for me.  He also explained that with Rheumatoid/ Auto immune dieseases, there is a book about 5 inches thick that explain all these unnamed conditions.  He said they are all related but not names.  I mentioned that I had a boss that didn't think it was real because I could not give him a named diagnosis.  He said that boss was an idiot and was not in any position to make that kind of call.  I think I agree, at least with the idiot part.
  This new doctor wants to make small changes and one at time changes in the the meds that I take.  He said that if I go nuts, he will know what caused it.  He said he want to "wake me up" and give me something to combat the chronic fatigue I feel.  He also told me to sit in the sun and read a paper or a book each day.  He said we need to get to the point where I can walk or exercise 45 minutes before we will see any physical changes in my fitness.  He said we are also going to get better at managing my pain.  He said that the pain I feel is real and I need to manage it to get better.  He pointed out that anytime I try to be "stoic" or "Army" I will tend to throw my healing off course.  He said if we can manage my pain and get some energy going in my system, I will be able to take some portion of control of myself and my recovery.  Makes sense to me.  I like that he listened and was looking up my prior meds before deciding what he was going to do.  He and I will visit again in a couple weeks.  I hope this might be some of the changes I need in my life.

Another thing, I found the website for another friend-co-worker.  His wife keeps a blog of what is going on with him.  I would like to post this here.  If you are interested enough to read my dribble, you should look at this site.  (Also, go to the bottom of her blog to get some music started while you read about Jim.)

Jim's Wife's Blog about his condition.

My internet connection has been up and down the last 2 days and it is getting slower now.. I will post this before it stops all together.

Sunday Trip

Yesterday, I made a commitment to go visit my friend Mark.  He is on my list of friends from work.  He now lives in a nursing home closer to my home.  Only one exit away.  Finding the place was really easy.  Google Earth helps me navigate Utah roads better these days.  I got to the place and took me awhile to find Mark's room.  He wife was with him.  I had not seen her in a several years and I guess the steroids and everything has changed me.  She didn't know who I was.  I told her and she didn't believe me.
  I had been told that Mark was walking and was shocked to see him.  He is still in bed.  He can not walk right now.  He just returned from another bout of infections and had a 7 day stay at the U of U hospital.  While there, Mark old neighbor came by to visit him.  We talked for a while, but Mark's meds kicked in and it became more difficult to talk.  I was having a difficult time, too.  I do not take some of my meds when i am going to be driving so I was uncomfortable and having a difficult time.  I was able to tell Mark and Tiffany, his wife, about some of the information that Megan has found about the possible toxins/ poisons at our worksite in Ogden.  Tiffany's sister, Ling, is also on my list of co-workers.  Ling died a few years ago.  I told them both that while it might be too late to help us, we might be able to work together to save other lives.  I also think it is important to get the word out to Ling's surviving family members.  We were able to exchange some information and promised to keep in touch.  I am going to add their picture here.  Maybe putting a human face on this will make it less of a names and numbers list and more of a real situation. 
  It is humbling and a grave reminder to me how good my situation is right now. Even as sick and tired and worn out as I feel, I still do not have it as bad as some people.
  One other note, Tiffany pointed out that while Mark did get a medical retirement from the government, and disability from Social Security, the VA collects most of that to pay for his long term care and expenses.  After all of this, being broken and hurt, he can not take care of his family.  He is going to be a ward and dependent of the State for his life.  Sometimes, I wonder if that will be my future if things keep going this way.

More news from work

I also found out that there was a Black Mold problem inside of this confined building.  While the danger was pointed out to all, no real decontamination effort was made.
  They remodeled the break room.  When the pulled out the cabinet around the sink, they found black mold.  Most information points out that this stuff is toxic and can spread through out a building.  This was wiped up and the new cabinet was put in place.
  I was told that I have asthma in 07.  Now, being just a little paranoid about the situation at work, I wonder if that is why I cough all the time.

Getting the word out

This past week or so, one of my co-workers has spread the word about the possible toxin exposure at where I worked.  During that time, more people have come forward and shared their own experiences.  Just yesterday, found another woman that worked there for one year that has cancer.  Others are going to their doctors.  What scares me the most, the leadership I contact at my work still do not see the "proof."  I wonder how many people must die before we no longer look for proof before we act.  I wonder when we start saying...hmm... something is going on here. (common scents?)  Maybe we should be safe first and pull the workers until we can find out what is going on here.  But everyone still works.  They found out there is a lead exposure problem about 18 months ago and just put out a bid for a clean up this week.    Doesn't feel like a rush to save lives.   I think it is entirely possible that everyone in the building could die at one time and without "proof" they would put in more workers.  Proof might never be found, but when do we just look at a problem and solve it.
  When I was in Iraq, one of our jobs was to monitor the number of linguists supporting the operations.  We had several ways of doing this.  One break down was by camp and we noticed that one camp had a very upsetting trend in the number of linguist deaths.  Most camps had one to four deaths among the linguists working with them.  But one camp was way over 50.  We realized that the insurgents were targeting the linguists in particular.  I remember talking on the phone with the camp commander and pointing out that he had to protect these linguists.  He said these deaths did not happen during duty hours.  These folks died when they went back to their home at night.  He didn't feel like he had a responsibility for contractors after they left the camp.  I told him to keep them in his camp and try to protect them.  He told me I didn't have proof that they were being targeted.  Later, a female captain I talked to recognized the problem and took on the responsibilty herself.  She ended up convincing the leadership to move all the linguists onto the camp and then started targeting the insurgents that were doing this.
  I wonder when I will find that kind of captain in my own organization.  I worry more will die and suffer and never find the smoking gun.  But they could have been saved if we acted a few years ago when the suspicions were first brought up.