Wow, I remember what I used to feel like after football practice when I was young. That is how I felt after trimming my yard last week. I am getting back to norm now and have some more to do. Once I get my pension I will hire crap like that out.

Okay, to put this in perspective......20 months rent/housing costs....$10,000.00 (500.00 a month). Heat bill.....$1800.00. Electric....$1000.00. Water and services,....$400.00. Groceries and other non needed items,...$6000.00. Medical bills (no insurance left or medicare yet),...$15000.00. Vehicle repair,...$800.00. Gas and oil,...$400.00. Car insurance,....$800.00. New computer,...$1000.00. Clothes,...$100.00. Phone,...$1000.00. Another non-essential item....Cable TV,...$600.00. Misc.,...$1000.00. There, pay that off with your $1250.00 (and still pay your normal living expenses.) a month Mr. (Laughing in the background.) Gee, why do you need a little entertainment? Getting angry? Not trusting anyone? That is too bad,....have a nice life. We are sure sorry for your inconvenience. Oh, and thank you for paying your taxes faithfully and not using the system to your advantage......HAHAHAHA! SUCKER!
And oh yes, do not forget to pay your lawyers. They did so much for you. WHAT? You want additional help,...sorry you make too much money. (Hideous laughter.)
All I can do is be thankful it was not worse.
Hi ho...Hi ho It's not to work I go. I get no pay , I had my play. Hi ho Hi ho.

I guess this has kind of changed into a journal. FINALLY I feel like I am getting back to normal after having strep throat. I was in bed for four days and nights except to go the doctor. Seems like I don't get that kind of sick very often but when I do it drops me.

I think all in all the Worker's Compensation Insurance Industry made a statement that I would not be covered anymore no matter what I did for a living. I was too much of a liability for them....so take your S.S. and be gone with you. Which is sad in a way that a pencil pusher that never has done a lick of physical labor can get rid of someone that easily. But, hey whatever I can roll with the flow.
My attorney for work comp. explained that their reasoning was that it had happened before. Imagine someone working construction had scaffold fall on them....cut their hand.....hmmmm. Must be Hunter's Syndrome. It was a way out for the insurance companies and always is as long as they have lobbyists controlling our congress.
Since the past twenty years every claim is denied automatically anyway. THEN, you have to take time off work to prove what is already known. Sometimes I am glad to be out of the game.

One thing I should apologize to people about is I think they know what is going on. They don't.....I assume they do but as usual my communicative skills are lacking. This is the best place for me to get across what is going on.
It also woke me up to the old saying "If you have your health you have everything." Of course a little money helps. I went from a good paying job to "making it." Which I am glad I can make it. I still think this is the greatest country in the world but needs some help with empathy. I can make it because I worked and paid into the system.
I have to admit working a job for cash at age 20 sounded good but now I am glad I didn't do it. People worry about Social Security not being there. SOMETHING will be because it is a consumer based economy and they cannot have fifty million people sitting around with nothing to spend. All they have to do is leave their grubby hands off of it and it will be fine. Uh oh....starting to get political....sorry.
Oh....have a good day!

Been a while since I have added anything....so here goes. It costs me more to run my air conditioning but to have it less humid helps my joints alot. I noticed in late May....early June when I could open the windows my shoulders and neck would really get to hurting. Like I say it costs more but I have to do it.
Making this blog has helped me get rid of some of the bad feelings I have towards lawyers, insurance companies and Social Security but it will never be fully repaired. To this day I loathe dealing with them all.
Then to go out and try to socialize and get called various names by people that have sat on the same barstool for 25 years and have nothing really irks me. The one thing they did have that I never did was their health and they wasted it.
People that waste a good healthy life are on the bottom of my list. I let them know it anymore also...I used to be a quiet nice guy but someone says anything wrong to me now. I avoid them like the plague. Life is to short to put up with pessimists and the naysayers.
I also would like to thank those that support my website. Ya just never know when you might be the one who needs help. Thank you all.

One thing about life is there are balances. For instance I cannot do what I used to do physically, but the age also brings with it experience and the know how to get things done. When you are young and starting out you do more physical work to get the money to get by.....when you are older you use the mind. I love seeing my friends kids getting a taste of life . My nieces and nephews are doing the same things. I love what I have been through but once was enough and I wish all the young folks a very hearty good luck.
I have never been a parent but have many "kids." Well....about done with my say and I thank you for even reading this blog.

One thing I did get to do which I really liked was take some writing courses through the local college online. It was fun and I learned from others in the "class." The teacher was great and the atmosphere was so different from the construction scene. I miss my work but not the motels and politics.
It seems to me that all the people I have come to meet with Hunter's Syndrome.....each case is a little different. Probably there are so many different strains of the disease they will never all be categorized.
I know in our family the people that have it are quiet, shy and generally pretty calm people. It has taken me 40 years to kind of lose my awkwardness towards those I do not know. Which is another reason I love the computer. This really has opened up my life, with the inability to hear well, it is kind of a dream come true. I can meet others and show my true feelings without being called something by someone who does not have a clue what you are going through. I don't expect people to know how I feel but then again a little respect would be nice.....I recently joined an MPS and Hunter's forum so I know I am not alone with this.

I am sorry this turned out to be more of a vent or rant then informational. All in all, the doctors commended me and my family has supported me. I moved back to the area where I grew up and love the house I found. I have many friends that I know would be there for me if I needed it. Some of them don't understand that I have changed but are getting used to the fact I can't do what I used to. Anyway not near as often. ( A few took it personal I think but there is nothing I can do about it.)
I have not been able to go to a dentist for over twenty years because of my jaw but have not had any problems with my teeth....thank God. They may not look the best but they are mine. My sister sold me her computer ten years ago and that has helped keep me occupied, once I learned how to use it I was hooked. My doctor asked me if was bored and I said no. The days go by so fast. Even doing this blog has seemed a chore though. I read, watch a little tv, play a game on here. Doing my own cooking and cleaning is about all I can do. I then get tired and lay down for a while.
I have never gotten depressed about having Hunter's, just trying to get help was what killed me. You have the doctors amazed at what you have accomplished and the system putting you down and fighting you. I am glad that part is over. If I make to the ripe old age of 55 I will be fine as my pension will be available. I can make it now but no thrills allowed.

I don't like going on about the ordeal of getting help but I think people should know what they are up against. Finally in the fall of 2002 I recieved a letter saying I would get Social Security. I did not know the first five months are withheld and I also had to pay the attorney. But I recieved my retroactive pay and started to dwindle down some of my debts. (I wrote my senator about the first five months being withheld....that is crazy...that is when a person really needs help.)
Well, with the hurdle of Social Security over my union disability kicked in. Now I was still dealing with a Worker's Comp. lawsuit.
The lawyers for the work comp. insurance company made me out to be a lying, gold digging fool. I was just not used to that kind of treatment and it did hurt what little pride I had left.
But I hung in there and took all their comments and six months later it finally ended. I hardly got anything but I did get a little. That also went to my debt payoff. Now I contacted the state insurance division and entered a complaint against the disabilty company that I had my pickup loan covered with. Two days later that was settled with them paying me the full amount. At least I was finally getting some of my debt paid off and could now focus on my health.

In my telling of the unreal trying to get help scene I have ignored the physical problems and some of the advice I have gotten over the years.
All my doctors have told me that working was actually the reason I am still able to even move. I try to keep active, anyway as much I dare. Yard work, housework, et cetera. My stamina is probably about a fifth of what it was just six years ago. My hearing is very bad now. My eyes are bad and I can bet some part of my body will be aching when I get up in the morning.
I have a niece and nephew with Hunter's and want to see them get a little more physically active. But that might not be possible for them.
The pains in my shoulder are sharp shooting pains, in my hips they are a dull constant pain. I have never believed in prescription drugs and find that Aleve helps. In my trips to the pediatric hospital in Iowa City I see the kids with bad cases and I thank God I was not that way. I pray for the families and wish them the best of luck and hopefully they can get some help from somewhere. They have a new treatment which would help me by slowing the process but it is not affordable.

By the time I had finished with Voc. Rehab., I had been to Iowa City to the genetic lab. I had many tests and my health insurance had run out because I was not working. I asked them where to get help to pay the bills and they directed me to Polk County Human Services. I went there and was told I possessed too much to recieve any help. Strike one. So the only thing I could do was throw the bills on my credit card.
The R.A. doctor had told me to file for S.S., I was denied. Strike two. So I started throwing my groceries on my credit card.
The R.A. doctor also suggested that work had a factor in my injuries. Also the genetics specialists agreed.
So I had to hire an attorney and file a lawsuit. All this was completely new to me. I had never sued anyone....never had too. Then the doctor asked if I had hired an attorney for S.S.? This was getting ridiculous. I had three specialists saying I needed to get Social Security yet I had to pay a friggin lawyer to get it? When I found a lawyer for S.S. he matter of factly said when he would get it for me. Then why did I get turned down twice?
All this is going on while you are feeling bad physically, then the feeling of being an outcast sets in. I actually thought I could end up a homeless person. My feelings towards some of them changed because now I see how it could happen.
I had disability insurance on my pickup loan....guess what. They denied my claim. Strike three. Next batter. My union had disability insurance but it hinged on getting Social Security. Steeeerike!
No income for a year and a half, no help whatsoever. Credit card ballooning. This was getting worse by the hour. The worst thing about it is there is nothing you can do but wait and go further into depression. This was the nightmare, the help that was supposed to be there was not there. Excuse me, didn't I pay my taxes or something?
I understand Social Security balking on some claims but I could not change my genetic makeup or pay three specialists to lie. I mean come on people get real. Even Voc. Rehab. could not find me anything.

In the summer of the year 2000 was when things began to happen. I began to tire very easily and started missing some work. I had rarely had to go to a doctor but this time was different. I had had two linguinal hernias repaired years before but like I say this felt different and I knew I was going to need help. The whole 2 year process started with me going to a small clinic in a shopping mall. I was seen by a gal who when hearing what I had recommended that I see a specialist.
I honestly think someone was looking out for me because the specialist I went to was the best thing that could have happened to me. He was a Rheumatoid Arthritis doctor who even knew what Hunter's Syndrome was. I have to admit that I had not met a doctor except at the University Of Iowa clinics who even knew what Hunter's was. He was intelligent, caring and understood what was happening to me.
One thing that was the shocker was when he asked what I did for a living and I answered "construction." He replied,"You are done." He gave me a prescription for Vocational Rehablitation and I contacted them. I went to the office and they set me up for a week long study to see what I could do. I tried various duties and my eyesight, hearing and lack of communicative skills always stood out. At the end of the week they had a conference with the office worker stating they did not think I was capable of holding any kind of job. They were very nice people who truly wanted to help me. But with their evaluation the nightmare would begin.

It would not have mattered if I had known about having Hunter's or not. My dad got me a job where he worked which was decent pay....good actually. By now my jaw was not able to open very wide and my hearing was progressively getting worse. (Just a note on the jaw...if it happens get it fixed while you are young because they say mine is not fixable because of my age.)
I loved the job and stayed with it for the 22 years. It was a very physical job but I liked it.
I traveled extensively. Working in Des Moines, Iowa...Kansas City, Mo.....Denver, Co....New Orleans, La....Rogers, Ar....and about a thousand small towns in between.
Once when I was in between jobs I tried to join the Air Force but was turned down because of my poor hearing.
But throughout my working life....20's and 30's everything went pretty well. I actually was starting to do quite well by the year 2000. Loved where I was living and I was on the union board. Then things started to change and I had no idea what was happening to me.

When I was a young boy I noticed some bumps on my back in the shoulder area. There was no pain associated with them, they were just there. I told my mom and she took me to the small town clinic. The doctor there had never seen anything like this and recommended a trip to the city to see a dermatologist. My parents took me there and the dermatologist cut some of them off to analyze.
As far as I know he could not figure it out either and he suggested the Mayo Clinic. How my parents could afford this is beyond my explanation but seeing how it was in the late sixties, early seventies maybe it was not as hard to get help then. (Because I sure get none now.)
At the Mayo Clinic there were countless doctors and tests. It seemed like to me they took hundreds of blood samples. Actually it was probably few but as young as I was it seemed they were taking blood every hour. Finally we got to go home and that was it. They figured out what I had and I would not know until my early twenties.