Should Have Seen It...

"I know of no other disease, potentially curable, that can lead to permanent disability and death. A disease doctors don't want to treat and one that they think is fine to spend years on "watchful waiting." I also don't understand why doctors think it is morally acceptable not to work to understand a disease in their expertise or complain that it is too hard, leaving the patient to their own devices to solve the problem on their own. I wish that we were treated by oncologists, because I think there would be different attitude." -Deb

Deb said it best. What Deb doesn't get into is the fact that many of us will go beyond broke trying to find help in far away states. Help that, if the doctor's took the time to learn, should be available within driving distance. If I as layman, can pick up a medical journal, or find one on google and read and understand what they are doing is wrong, what is their problem?

We should never have to become doctor, lawyer, lab tech, and insurance rep to get help, especially when we are already fighting an uphill battle. I tell you this, had it not been for my wife and our church, I would be gone. She had to fight to get me to surgery with everyone when I had given up because I couldn't fight anymore. The church helped get us to where we needed to go and would have to stay for awhile.

Now, I am still not well. I manage on a day to day, and hour to hour bases. One has to wonder how well I could have done had the doctors not failed to rescue me in a timely manner.

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Recovering from the latest infection. Things are OK. I wish I could say it was great. I am still trying to adjust and recover. As I move closer to the two year mark since my surgery and "cure", I move from trying to recover to mostly trying to adjust.

I know everyone is tired of it. Thinking about it. Talking about it. Living it. The thing is, I am tired of it all. The doctor offered to have someone come talk to us at home for mental health. I think I will take her up on the offer. I think...I Think it is not healthy to dwell on what I lost physically, mentally, and emotionally.

I know I have said it before, but I am not sure how to do that when you live with the after effects of the past disease and the current effect of the new one, Addison's Disease. Surely there is some way to come to terms and go on. I am not sure how to fit that in between the puking, nausea, utter exhaustion, sleeplessness, constant infections...you get the point.

I feel ashamed for still feeling bad. People don't really want to hear about it, even though they ask how are you. You can see it on their faces, "I hope he just says ok", and that is what I tell everyone now. I used to tell everyone I was fine, out of habit, but it feels like a lie every time I utter it. I know I sound ... negative or something bordering on it. If you haven't went through it, it is hard to understand. After years of living it, it is hard not to let it consume conversations and thoughts. You just want people to understand why it is you miss work, church, social events, ball games and the list is long.

I don't want pity or tears, but it would be nice if people understood my life. Not because my life is any worse than anyone else having problems, but because I have to live in this egg shell that is my life. I just want to be understood.

I do have good things that happen. I have adjusted somewhat. I don't feel negative about life or living. I am quite happy about that latter. I miss things I used to do but have time to do things now I really love. I assure you, that I am thankful for everything in life, but when you live a constant illness and feel crappy, what can you say?

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alive and holding on to hope. Read more!

It has been a long time. I have little energy to write. My mind is cloudy and unclear. I sleep often and then I go days with little to no sleep and walk like a zombie. It is like a nightmare at times. Lonely. Lost. Alone. Unloved. Hopeless.

Then there are times, sometimes lasting minutes or hours, that I feel alive. Not well, but alive. Thankful. Appreciative. Hopeful. Smiling. Loved.

It is in these minutes of being alive that I write that I might remember and come back here to read. To remember. To heal. To hope. To love. Be thankful. It could have all ended with no cure and an unhappy ending to my disease. The tumor(s) are there but the damage can no longer be done. Cushing's isn't killing.

While I am cured, the damage is done. I may find, in time, some things are better. Months of therapy have left little doubt that many things are not going to change, or may change a little. I have little hope of working anything other than a few hours a week. I will never walk without crutches again.

But I am watching my children grow. I am there for them when a lot of parents are still working. I spend more hours with my wife than most husbands and we love each other more each day. It is the sunshine and the rain. It is the ying and the yang. It is a time for all seasons. It is the good and the bad. It is in everyone's lives. My circumstances are just different, not better or worse than anyone else. Who am I to complain?

I need to find a place in the world. I need friends. I have lost mine in these years of being sick. I need to find something to make me feel whole. I need to matter. Read more!

Dear Me,

I just thought I would update you. I am still doing therapy once a week. They are adding speech therapy and a neuro psychologist to try and patch up more holes with talking, therapy, medicine. My problem solving skills are still there, but its hard to reach them and they are working on singular tasks. Tasks, like driving, are hard.

Earning a living isn't easy anymore. I have lost my ability to multi task, which you need building software. There are something that run a singular path, and I can do it slowly. I am not the hot shot super star programmer I once was. I am trying to find my place in the workforce, but it is hard when you work a few hours a week. I am so tired from the time I wake up till I go to bed, if I can sleep. On the days I sleep well, I sleep most of the day.

Miami Valley Hospital applied for a service dog for me. The dog will help me be more independent. It can pick things up I drop. Grab my medicine when I am to sick. It can go find help. It can do much more. I think it is a good idea, but two years to wait for one is a long time.

Certainly I am not the only one with a BLA or Addison's Disease to feel this bad? I have less energy and stamina now than before the surgery. In some ways I feel as bad or worse. How can that be? I was sick with Cushing's a long time and it really got bad for a few years. Is that why it is worse?

Time is all I have and time is what I am spending everyday. I am patiently waiting to get better and actively seeking ways to help with that. Things are improving, just not in the area's I need or want them to. I feel better than I did with Cushing's, generally. I can do things to fix the ickiness, like sleeping and taking meds that didn't work before.

Each day brings to reality that my daughter probably suffers with the same tumors. MRI scans seem to give life to the probability as well as two positive lab tests. You would think that would be enough, and probably in a lot of things it would. She doesn't face just a few more tests, but probably months or years of more testing.

Months will go by with negative tests, and then a positive. The positive will keep the doctors looking and the negative tests will cast doubt. Family history and the few positive tests are not enough. An 11 year old girl is sentenced to months and potentially years more of headaches, flu like illness, weight gain, body changes and more. In more advanced stages, it is bone loss, muscle loss, massive/many infections, diabetes, blood pressure problems, loss of vision, and more.

I shudder to think about the mental changes. I have been there. I know and I am worried. I know what it did to me. I know what is better and I know what is not. The longer this lasts, the worse it will get.

So each day, I get up to fight for her. It is a purpose, but it is one full of waiting and patience. There is only so much you can do. The doctor's are in control. We just have to know when to push and if the pushing doesn't work, the wisdom to get out and find someone else that will help. Me and Brooke are going to keep on truckin. Momma keeps us moving, lest we stop or quit.

Your Friend,
Us

ps
go to bed now.





***The author, Steven Owens, suffered from Cushing's Disease for a number of years. Years of testing led to brain surgery at MD Anderson Cancer Center, which failed, leading to a complete removal of adrenal glands 20 months later. Trading Cushing's Disease for Primary Adrenal Insufficiency/Addison's Disease, the author continues to pick up the pieces and try and get his daughter diagnosed. She exhibits the same symptoms, both physical and mental. They are very visual.***
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