shelleynshaggy
Distinguished member
- Joined
- Sep 2, 2009
- Messages
- 280
- Diagnosis
- 08/2009
- Country
- US
- State
- OH
- City
- Brunswick
Feeling down - I am so angry with EVERYTHING! I feel so bad - Jim is having a hard time and I feel angry with him. He is saying he is having problems opening and closing his eyes (okay not angry on that one.) He is back to getting up several times a night - but having problems getting in and out of bed so he is waking me everytime he gets in or out of bed. Last night he literally rolled out of bed and he got stuck on the floor. I am now on Cpap (who would have thought I would have one before him?) and so I am having to get up several times a night to help him, readjust the cpap and try to sleep. I am upset about my whole cpap thing too.
On top of that I just found out this AM that I am positive for a genetic mutation that prevents me from properly processing antidepressents. Good news is there is a "medical food" I can take that will help to correct this - but of course insurance does not cover this - so it is more $$ a month. On top of this, this gene increases my risk of blood clots and arteriosclerotic coronary artery disease.
What the hell else can Jim and I pass onto our kids? All of Jim's genetic tests for ALS and FTD have shown negative so far but his maternal grandmother did have PSP and his dad was adopted so his gene pool is murky. Last month he signed onto a new study to have ALL his genes mapped for mutations (part of a FTD study from NIH).
Then yesterday I wake up to a dripping sound - it is raining INSIDE. Our fairly new bedroom window is leaking. I just want to cry. My strength is crumbling fast. I cannot take much more! I hate the cards I have been dealt, I hate this house, I hate my life. Our anniversary is quickly approaching and all I can think is this is NOT how I pictured any of this! I SO miss the man that I married! I think I could handle this better if we were older and we weren't dealing with dementia an "old person" disease in our 30s. I don't have the strength to face the day anymore, it feels like the harder I try the more life throws at me. I am quickly reaching my breaking point.
On top of that I just found out this AM that I am positive for a genetic mutation that prevents me from properly processing antidepressents. Good news is there is a "medical food" I can take that will help to correct this - but of course insurance does not cover this - so it is more $$ a month. On top of this, this gene increases my risk of blood clots and arteriosclerotic coronary artery disease.
What the hell else can Jim and I pass onto our kids? All of Jim's genetic tests for ALS and FTD have shown negative so far but his maternal grandmother did have PSP and his dad was adopted so his gene pool is murky. Last month he signed onto a new study to have ALL his genes mapped for mutations (part of a FTD study from NIH).
Then yesterday I wake up to a dripping sound - it is raining INSIDE. Our fairly new bedroom window is leaking. I just want to cry. My strength is crumbling fast. I cannot take much more! I hate the cards I have been dealt, I hate this house, I hate my life. Our anniversary is quickly approaching and all I can think is this is NOT how I pictured any of this! I SO miss the man that I married! I think I could handle this better if we were older and we weren't dealing with dementia an "old person" disease in our 30s. I don't have the strength to face the day anymore, it feels like the harder I try the more life throws at me. I am quickly reaching my breaking point.