04-20-2018, 08:21 AM
(04-19-2018, 03:26 PM)MoJim Wrote: Thanks, Rafterman. CLL can be slow or fast growing. I fall in the middle. When originally DX the prognosis was 6-8 yrs life expectancy. At 8 yrs I would live long enough to see my youngest child reach the age of 18. I accepted that, if all my children were adults when I passed. Thanks to seeing, literally, some of the best CLL specialists in the world and the changing landscape in blood disorder field, we celebrated her 23 birthday a couple of days ago. I see my onc next week and I believe I'll be back in the infusion center by the end of the year. I know my CLL well and can feel all the signs and symptoms when it is progressing.
Though looking into SSD might be worthwhile, I wonder how the process would work since I'm officially retired. I'm sure the Union pension plan would have something to say about the additional income. I had planned on collecting SS at age 62, but riding SSD to 65 is appealing. I think when I'm actually back in treatment it will be a subject worth revisiting.
Thanks Again
MoJim
Wow, God bless you, MoJim. That means that you have already lived 13 years when they gave you an 8 year max. You keep fighting it, my friend. I have a somewhat similar story to yours. I was diagnoses with ALS 2 years ago, but have actually had it for over 5 years. I avoided getting it officially diagnosed cause who in hell wants to know they have that disease for certain? I met a specialist from NJ who hooked me up with IV drips of Interferon-A, Digoxin and Copper. It has slowed the progress to a crawl and I actually think my hands have come back a little bit. I am back to typing. Never give up. This disease is supposed was supposed to kill me by last year. I am nearing 60 and people that old do not fare well at all with it.....On your other point, I had a similar situation with a pension when I applied, and was approved for, SSD. I started feeling sick, retired and took my pension, but didn't have a diagnosis yet. When the SSD kicked in, it did affect my pension amount, but I still came out ahead. Let me tell you about it. Theoretically, I should have still been able to receive 100% of my pension payments and 100% of my SSD payments. I paid into both for my entire career. But the law said that one of them had to have an "offset". I could receive 100% of one, but only 60% of the other (the 60% one was "offset" by 40%). So I get 100% of my SSD, along with 60% of my pension. I was getting 100% of my pension, and 0% of my SSD...so I am pretty happy. Your pension provider may actually welcome you going on SSD because it may save them money. The SSA can be bastards, but there are several conditions that are supposed to gain automatic approval. If you may be interested in moving forward, I would ask a lawyer who only handles SSD cases. He would know what really flies and what doesn't, in the real world of SSD. CLL may open the doors you need opened. I know a phenomenal firm out of Philly that have one of the highest winning percentages in the US. I believe that the can represent someone in any state. If you ever decide you want to explore you options, I will hook you up with them, if you like. Take care for now. Rafterman