NOT A HAPPY ROLE MODEL
It seems like just 4 weeks ago that I last posted. Oh yeah, it has been 4 weeks...
If I were to follow my gut feeling, it might be another month before you saw anything new. I can't believe that there are still 30 of you who regularly check in to see if I've added anything. How can you do that? Wouldn't you think that I'm all done? That I've finished talking? Well the reason that I've been silent is that I've been hiding. I haven't wanted to talk, or do much of anything.
Feeling depressed... or am I just lazy?? I don't feel like I am able to inspire myself. So how can I continue to inspire others? Physically I had been doing fairly well.
[Last couple of days I've been having a complication and we don't know what it is, but that doesn't explain the doldrums. I'll detail the complications in a separate posting. This posting is just for the wimpy stuff...]
When I was released from the hospital I was so happy that I had reduced my medications to about 1/2 of my pre-treatment schedule. Now I am back up to the full allotment. The only drug I haven't returned to is one that I had taken for many years, to treat ADD. It is the one that I stopped taking, and experienced withdrawal symptoms, when I had the instances of arterial fibrillation. Remember? That is when I was a mean person - and made Robbi cry, and scared a nurse out of my room.
It turns out that I may need to go back onto that medication, as it helps to balance certain brain activities that affect my productiveness and moods. I had thought that I could over-ride the need for that assistance but alas, I am just a human... with a neuro-chemical imbalance... and Scleroderma.
Speaking of Scleroderma: I still have it. I have all of the symptoms that I had prior to the treatment. My recovery from the treatment seems to have been completed - in that I had recovered my ability to move about in the general population without mask and gloves... my breathing was stable and as good as it was in early December... my tolerance for activity was, though not fully returned, nearly recovered... my skin is still the same - I have not seen any softening, as most previously treated people have reported. The skin issue has been a disappointment, I must admit.
For all that I know - that the success of the transplant is measured in years not months - I am still disappointed... depressed, and I can't help but feel that way. Perhaps it is fed by having to explain over and over that the benefits are not expected for many months / years. That the true success is that I might live longer than the 2-3 years that was my expectancy. It does get tedious. But, the questions come from the same people that have literally invested their time and money - and all they want to know is "is it working?" It's a fair question.
Responding to that question has become increasingly difficult, which raises yet another issue - am I ungrateful and rude if I don't want to be an inspirational role model? This is a question that I just now posed to myself as you see it - so I haven't even had the time to consider a thoughtful reply. mmmmmmm - i should probably begin to think these things through before I write & post them. But what fun would that be....
If I were to follow my gut feeling, it might be another month before you saw anything new. I can't believe that there are still 30 of you who regularly check in to see if I've added anything. How can you do that? Wouldn't you think that I'm all done? That I've finished talking? Well the reason that I've been silent is that I've been hiding. I haven't wanted to talk, or do much of anything.
Feeling depressed... or am I just lazy?? I don't feel like I am able to inspire myself. So how can I continue to inspire others? Physically I had been doing fairly well.
[Last couple of days I've been having a complication and we don't know what it is, but that doesn't explain the doldrums. I'll detail the complications in a separate posting. This posting is just for the wimpy stuff...]
When I was released from the hospital I was so happy that I had reduced my medications to about 1/2 of my pre-treatment schedule. Now I am back up to the full allotment. The only drug I haven't returned to is one that I had taken for many years, to treat ADD. It is the one that I stopped taking, and experienced withdrawal symptoms, when I had the instances of arterial fibrillation. Remember? That is when I was a mean person - and made Robbi cry, and scared a nurse out of my room.
It turns out that I may need to go back onto that medication, as it helps to balance certain brain activities that affect my productiveness and moods. I had thought that I could over-ride the need for that assistance but alas, I am just a human... with a neuro-chemical imbalance... and Scleroderma.
Speaking of Scleroderma: I still have it. I have all of the symptoms that I had prior to the treatment. My recovery from the treatment seems to have been completed - in that I had recovered my ability to move about in the general population without mask and gloves... my breathing was stable and as good as it was in early December... my tolerance for activity was, though not fully returned, nearly recovered... my skin is still the same - I have not seen any softening, as most previously treated people have reported. The skin issue has been a disappointment, I must admit.
For all that I know - that the success of the transplant is measured in years not months - I am still disappointed... depressed, and I can't help but feel that way. Perhaps it is fed by having to explain over and over that the benefits are not expected for many months / years. That the true success is that I might live longer than the 2-3 years that was my expectancy. It does get tedious. But, the questions come from the same people that have literally invested their time and money - and all they want to know is "is it working?" It's a fair question.
Responding to that question has become increasingly difficult, which raises yet another issue - am I ungrateful and rude if I don't want to be an inspirational role model? This is a question that I just now posed to myself as you see it - so I haven't even had the time to consider a thoughtful reply. mmmmmmm - i should probably begin to think these things through before I write & post them. But what fun would that be....
posted by DesktopDavid at 9:41 AM
2 Comments:
Dave-
Just wanted to let you know that my thoughts have been with you everyday. Just take care of yourself!!
Amy Daniels
sorry you are having a hard time. I wish I could take away all your pain and frustration. You are thought of daily and take care.
Love,
Devona
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