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!
