shelleynshaggy
Distinguished member
- Joined
- Sep 2, 2009
- Messages
- 280
- Diagnosis
- 08/2009
- Country
- US
- State
- OH
- City
- Brunswick
I just need to write this for me and to share with someone but don't feel that I can do it on my general blog so I have to share with my ALS/FTD family. I know I am safe to have my pity party here.
For quite awhile I have been beating myself up for not taking care of me. Every day I get everyone going, I get Jim's meds taken care of yet I forget mine. I cannot myself up and going. I do only what I need to. My sleep issues are mounting though I have what is considered chronic insomnia I am always tired and find myself sleeping more and more yet never rested. I ache like I have the flu - but no other flu symptoms. My doctor wants me to follow up with psych and sleep disorder specialist but I just can't seem to do it. We exhausted our MSA account over a month ago and have meds added since. I tried psych once and just got sick of explaining FTD and ALS to the counselor. Plus I feel that the current issue is me - not Jim. I feel like each day I lose my empathy and apathy just like him. My emotions are gone. I ache.
During all this they have started to test my 6 yr old for ADD. This means more specialist visits. I am watching my girls who were raised for 2 1/2 years mainly by Jim struggle with their social/ emotional/ behavioral deficiencies (as the schools say.) Now I am trying to minimize the damage done. I see dad's lack of empathy coming through in their behaviors.
I also found out our specialist copay is going up at the first of the year. My MSA limit is nearly maxed out already at minimum copays and rx coverage.
Then last week, 2 days before my birthday, I was diagnosed with fibromyalgia. At least it explains a lot. But really? It explains the pain, fatigue, migraines, insomnia, constant sleepiness, unrefreshing sleep etc.
The day after my birthday I find out they are cutting our hours at work by 10% (again.) This is actually costing me almost 17% of my pay because I earn a "bonus" for working weekends that is based on the number of hours I work - so I lose an extra 20 min of pay on top of each hour cut.
Ok... so I hit rock bottom .... again.... right? Of course not...
Today we took the next step in the bankruptcy procedure - a date before the court. It was postponed another 2 weeks but not before this b$tch behind the desk decides that our assets are too high and we will have to pay to keep our van --- something I have always owned free and clear. Not sure the amount yet but somewhere in the tune of $3000. I couldn't even react - I just wanted the f' out of there before the tears I have not found in so long burst through.
I get to the parking garage to have some low life attendant yelling at me that we have to pay and parked in the "wrong handicapped spot. That one is for vans only." I am assuming wheelchair accessible vans though there is no loading room. He is threatening to ticket me! Mind you this a$$ was nowhere to be seen when we parked. You pay on your way out AND the only sign is the "standard" blue and white handicapped sign. I literally threw the money at him and got in the van somehow without this guy's head in my hands - literally ready to rip him a new one.
I am sick of seeing those who have done nothing right rewarded. We don't qualify for $hit because I actually married the man I had 2 kids with, carried insurance that has paid for all of this. I have gone through college in 3 years and my medical training and externship while working full-time. Waited to have my kids until after completing my training and getting a job -- and 5 yrs of marriage. We got married young - but originally had our house scheduled to be paid off in 10 years. Ya that came and went over 2 years ago.
Now I am being judged by this emotionless b*tch who is deciding what I owe to keep my run down, dented, bald-tired van that is parked in the wrong handicapped spot.
I know people who live frivolously paycheck to paycheck. I have stretched that gap 7 years starting when my 1st pregnancy ended up complicated and with no maternity leave. Bounced back. Lost my job. Bounced back. Worked every spare position I could find and got a "good" job. Saved up, "fixed" everything. Saved a maternity fund. Then decided to move on. Four months into that pregnancy FTD symptoms started (I now realize). Jim lost a job, then another, a 3rd, a 4th. So we overcame - he stayed at home and I was working for the both of us. Jim got into "the" car accident. He was then diagnosed with FTD. I lost my 2nd job. Jim was diagnosed with ALS. Etc. I am so done.
Every day at work and elsewhere I see these families scamming the system. The get daycare, groceries, healthcare etc because they "qualify" yet our medical expenses don't count - just my income. So I am making less overall even with "good" coverage. Maybe I would feel better if I had a couple big screen tv's, a nice car or a house in good repair as a reason for the debt issues instead of a pile of medical bills and debt run up by someone who did not get the concept of spending. Maybe it would be different if this bankruptcy would really set me free and clean my slate. But it doesn't and unlike most of my class I have the school loans to prove it.
All my mom can do is cry with me. My dad is still being unsupportive - now watching mom's money so that she can't help. (We still think there is dementia setting in there - the mean kind.) He is now feeling "put upon" since "he" - not my mom - watches my family every weekend. I feel I can't be 100% candid with my support system because I know that they can't do anything else but worry and that doesn't help anyone. So here is my release..
So all of this is running through my head on the ride home the long lost tears come rushing. AND Jim turns to me and says .....
Wait for it......
What's for lunch?
FTDers truly get the comedy of that one!
Sigh... It is what it is not what it should be. I will bounce back.
Ok I vented... no sympathy wanted. Just needed to get it off my chest. I am hoping this is the "true" bottom because I'd hate to think of the next one.
For quite awhile I have been beating myself up for not taking care of me. Every day I get everyone going, I get Jim's meds taken care of yet I forget mine. I cannot myself up and going. I do only what I need to. My sleep issues are mounting though I have what is considered chronic insomnia I am always tired and find myself sleeping more and more yet never rested. I ache like I have the flu - but no other flu symptoms. My doctor wants me to follow up with psych and sleep disorder specialist but I just can't seem to do it. We exhausted our MSA account over a month ago and have meds added since. I tried psych once and just got sick of explaining FTD and ALS to the counselor. Plus I feel that the current issue is me - not Jim. I feel like each day I lose my empathy and apathy just like him. My emotions are gone. I ache.
During all this they have started to test my 6 yr old for ADD. This means more specialist visits. I am watching my girls who were raised for 2 1/2 years mainly by Jim struggle with their social/ emotional/ behavioral deficiencies (as the schools say.) Now I am trying to minimize the damage done. I see dad's lack of empathy coming through in their behaviors.
I also found out our specialist copay is going up at the first of the year. My MSA limit is nearly maxed out already at minimum copays and rx coverage.
Then last week, 2 days before my birthday, I was diagnosed with fibromyalgia. At least it explains a lot. But really? It explains the pain, fatigue, migraines, insomnia, constant sleepiness, unrefreshing sleep etc.
The day after my birthday I find out they are cutting our hours at work by 10% (again.) This is actually costing me almost 17% of my pay because I earn a "bonus" for working weekends that is based on the number of hours I work - so I lose an extra 20 min of pay on top of each hour cut.
Ok... so I hit rock bottom .... again.... right? Of course not...
Today we took the next step in the bankruptcy procedure - a date before the court. It was postponed another 2 weeks but not before this b$tch behind the desk decides that our assets are too high and we will have to pay to keep our van --- something I have always owned free and clear. Not sure the amount yet but somewhere in the tune of $3000. I couldn't even react - I just wanted the f' out of there before the tears I have not found in so long burst through.
I get to the parking garage to have some low life attendant yelling at me that we have to pay and parked in the "wrong handicapped spot. That one is for vans only." I am assuming wheelchair accessible vans though there is no loading room. He is threatening to ticket me! Mind you this a$$ was nowhere to be seen when we parked. You pay on your way out AND the only sign is the "standard" blue and white handicapped sign. I literally threw the money at him and got in the van somehow without this guy's head in my hands - literally ready to rip him a new one.
I am sick of seeing those who have done nothing right rewarded. We don't qualify for $hit because I actually married the man I had 2 kids with, carried insurance that has paid for all of this. I have gone through college in 3 years and my medical training and externship while working full-time. Waited to have my kids until after completing my training and getting a job -- and 5 yrs of marriage. We got married young - but originally had our house scheduled to be paid off in 10 years. Ya that came and went over 2 years ago.
Now I am being judged by this emotionless b*tch who is deciding what I owe to keep my run down, dented, bald-tired van that is parked in the wrong handicapped spot.
I know people who live frivolously paycheck to paycheck. I have stretched that gap 7 years starting when my 1st pregnancy ended up complicated and with no maternity leave. Bounced back. Lost my job. Bounced back. Worked every spare position I could find and got a "good" job. Saved up, "fixed" everything. Saved a maternity fund. Then decided to move on. Four months into that pregnancy FTD symptoms started (I now realize). Jim lost a job, then another, a 3rd, a 4th. So we overcame - he stayed at home and I was working for the both of us. Jim got into "the" car accident. He was then diagnosed with FTD. I lost my 2nd job. Jim was diagnosed with ALS. Etc. I am so done.
Every day at work and elsewhere I see these families scamming the system. The get daycare, groceries, healthcare etc because they "qualify" yet our medical expenses don't count - just my income. So I am making less overall even with "good" coverage. Maybe I would feel better if I had a couple big screen tv's, a nice car or a house in good repair as a reason for the debt issues instead of a pile of medical bills and debt run up by someone who did not get the concept of spending. Maybe it would be different if this bankruptcy would really set me free and clean my slate. But it doesn't and unlike most of my class I have the school loans to prove it.
All my mom can do is cry with me. My dad is still being unsupportive - now watching mom's money so that she can't help. (We still think there is dementia setting in there - the mean kind.) He is now feeling "put upon" since "he" - not my mom - watches my family every weekend. I feel I can't be 100% candid with my support system because I know that they can't do anything else but worry and that doesn't help anyone. So here is my release..
So all of this is running through my head on the ride home the long lost tears come rushing. AND Jim turns to me and says .....
Wait for it......
What's for lunch?
FTDers truly get the comedy of that one!
Sigh... It is what it is not what it should be. I will bounce back.
Ok I vented... no sympathy wanted. Just needed to get it off my chest. I am hoping this is the "true" bottom because I'd hate to think of the next one.
