Still...
alive and holding on to hope.
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Finding my way...
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!
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...
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.***
Read more!
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.***
Read more!
The Broken Toy...
The "Before The Cure" series are items I wrote as I struggled with finding why I was sick and then finding a cure. Some of my writings were dark and dreary, but a lot of them were written to help me remember to have hope. Some of them were poetry. I am not a writer or poet. What I write comes from my heart and how I feel at the point in time I write.
The Broken Toy poem was written because people were really treating me, well, like a broken toy. We were missing family and I believe they were all struggling and trying to make sense of my sickness. I thought that this is how a broken toy must feel, if it could, and a poem was born. I hope you enjoy it.
The Broken Toy
I live in the silent toy box...
broken and alone.
I am the same toy I used to be,
I'm just missing a little foam.
Do you remember the golden days...
like Christmas morning at the tree?
I wonder now when you look,
what do you see left in me?
I am a broken toy...
does that make me worth less?
Just a few moments of your time,
surely I would feel blessed.
Don't look at me with scorn...
Don't look at me with disdain.
I am a broken toy,
but does it mean I feel no pain.
Copyright 2006-2009 Steve M Owens
Read more!
The Broken Toy poem was written because people were really treating me, well, like a broken toy. We were missing family and I believe they were all struggling and trying to make sense of my sickness. I thought that this is how a broken toy must feel, if it could, and a poem was born. I hope you enjoy it.
The Broken Toy
I live in the silent toy box...
broken and alone.
I am the same toy I used to be,
I'm just missing a little foam.
Do you remember the golden days...
like Christmas morning at the tree?
I wonder now when you look,
what do you see left in me?
I am a broken toy...
does that make me worth less?
Just a few moments of your time,
surely I would feel blessed.
Don't look at me with scorn...
Don't look at me with disdain.
I am a broken toy,
but does it mean I feel no pain.
Copyright 2006-2009 Steve M Owens
Read more!
Life, now in HD (where available)...
Life passes me by every hour. At first, it was still about Cushing's. It consumed me all the time, even after surgery and a cure from Cushing's Disease. I have slowly noticed there are some hours I don't remember having it. I know I don't feel well, but the reasons of it seem to either leave my mind or not matter. The weight loss. I remember why that is happening clearly though.
The weight loss started at about 5 lbs a month. In June, it went to 10lbs in three weeks. Now, 11 days later, I am losing a pound a day. The funny thing is, I am taking 40-60mg of cortef a day to stay out of AI and I still don't feel well.
I'm not complaining here because it feels good to loose. I am just wondering if this is a reversal of Cushing's or if Adrenal Insufficiency is a problem too. Hard to tell for me. I think it is probably both.
Cushing's Disease is a large overdose of steroids, usually man made, or in my case, my body made it. It causes massive weight gain in short amounts of time. It destroys the body and in some cases is just as harmful to the mind. My overdose is gone, my adrenals are no longer residing within me. I have Addison's Disease or Primary Adrenal Insufficiency, depending on who you ask. They both cause the same problems, but may be caused for different reasons.
I still feel bad, and really bad most of the time. Every change is a puzzle, every meal a concern for keeping it down. Dehydration is a real threat because I don't want to drink. I leave bottles on my desk to remind me what I have drank that day. I can not remember to eat, drink or take pills, but I use the tools we can think of to remind me.
As bad as that may sound, I am going on and trying to find my place in my new world. I don't work often, but I am trying to find innovative ways to weave in what I can do when I can do it. Life isn't easy for us, but we are living it in the modified fashion we need to do it in. We make adjustments to life and we go on. Work is a hard one to crack. With little energy or stamina as well as other problems, it is hard to do the few hours I do manage. We keep coming up with different ideas to try to help. I'm not giving up yet.
Living with Addison's is far better than dying with Cushing's. A path I avoided twice with the help of a family doctor who wouldn't quit on me, two very skilled surgeons, a researcher in California and a little known Cushing's doctor from Dayton, Ohio. Most of all, I owe a lot to my wife and kids who everyday look out for me and keep me moving.
Read more!
The weight loss started at about 5 lbs a month. In June, it went to 10lbs in three weeks. Now, 11 days later, I am losing a pound a day. The funny thing is, I am taking 40-60mg of cortef a day to stay out of AI and I still don't feel well.
I'm not complaining here because it feels good to loose. I am just wondering if this is a reversal of Cushing's or if Adrenal Insufficiency is a problem too. Hard to tell for me. I think it is probably both.
Cushing's Disease is a large overdose of steroids, usually man made, or in my case, my body made it. It causes massive weight gain in short amounts of time. It destroys the body and in some cases is just as harmful to the mind. My overdose is gone, my adrenals are no longer residing within me. I have Addison's Disease or Primary Adrenal Insufficiency, depending on who you ask. They both cause the same problems, but may be caused for different reasons.
I still feel bad, and really bad most of the time. Every change is a puzzle, every meal a concern for keeping it down. Dehydration is a real threat because I don't want to drink. I leave bottles on my desk to remind me what I have drank that day. I can not remember to eat, drink or take pills, but I use the tools we can think of to remind me.
As bad as that may sound, I am going on and trying to find my place in my new world. I don't work often, but I am trying to find innovative ways to weave in what I can do when I can do it. Life isn't easy for us, but we are living it in the modified fashion we need to do it in. We make adjustments to life and we go on. Work is a hard one to crack. With little energy or stamina as well as other problems, it is hard to do the few hours I do manage. We keep coming up with different ideas to try to help. I'm not giving up yet.
Living with Addison's is far better than dying with Cushing's. A path I avoided twice with the help of a family doctor who wouldn't quit on me, two very skilled surgeons, a researcher in California and a little known Cushing's doctor from Dayton, Ohio. Most of all, I owe a lot to my wife and kids who everyday look out for me and keep me moving.
Read more!
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