Sometimes it feels as if they aren't my legs

Exactly! Like it's somehow not connected..

Hey AB,

I am sorry to hear things have gotten worse. UGH! SSDI is difficult in that it seems like if you have one working limb they think that's adequate under the guidelines. I understand wanting to get back to work and keep looking at PRN type things myself, but I am not physically ready yet. However, I have noticed in looking that there are some telecommute ops for Health Coaching, probably part of the new healthcare regs. Also we used to always have a need for PRN chart review, QA, utilization review, etc. Any possibility of doing some part-time admin stuff that would keep you off your foot?

Littlepaw

I guess if it was as simple as being off my foot, I would find something. I still have pain in my knee, all the way down my leg and my foot. A sitting job would be great - if I could sit longer than 2 hours at a time without my leg swelling and pain getting worse. I really could use some type of healthcare job thing I could do at home. The only thing I found, I have to have an old school land line and pays $0.25/minute. Knowing my luck, I will carve out 8 hours and get one 10 minute phone call. Probably more options when I get my RN, but my doctor won't sign the physical form I need to take my final clinical exam to get my degree to be able to take state boards.

I'm just really feeling like I am totally on my own in all aspects here. I can't function enough to unpack my clothes, how can I function well enough to work? It took me 4 days to do 6 loads of laundry and that was sitting down in between each load!

I'm thinking I will call my PCP office on Monday but I know no one is going to order any therapy until I get that MRI...good luck getting medicaid to approve that quickly...

You may qualify for jobs that give first priority to disabled applicants--including potential government jobs that are answering calls from home. The best place to start would be with a Voc Rehab Agency. If they decide you are too disabled to perform any work, than you have documentation for SS. If you need additional testing or training, they will provide it for you. Either way, it should be helpful.

You should explain to your PCP that while you understand the need for introducing one medicine at a time, you are unable to work even part time at your current pain levels. Starting a journal with notations of how much time you're spending in and out of bed, or on the sofa with your leg elevated, would be very important. What activities (and how long are you doing them) are causing swelling and escalations of pain? This may be helpful to provide SS with info about your Activities of Daily Living as well, at some point. Your doc can then hopefully prescribe meds that will help, or at least refer you on to someone that will. If you are not taking any opiates, I would suggest starting with low dose naltroxone first. Perhaps bring a print out about it to your next appointment.

Neither you, your doc, nor SS, really can guess how you'll react to treatment and/or meds. You might not even have found the best doc for you yet. While it's unfortunate that the SSDI process can be long and complicated, it is just the reality.

It's a really good idea to encourage your healthy friends and family to research and invest in Long Term Disability Insurance, to help with exactly these types of problems. (Those that live in CA, HI, RI, NY and NJ at least have short term disability provided by the state available in many scenarios.)

Thank you for the voc rehab suggestion...probably my only (last) hope.

I'm okay with the long SSDI process...what I'm NOT okay with is having to tell my docs what to document and stand over them making sure they do. I'm also going to be unable to switch docs that easy due to medicaid. This one took me 2 months to get into after waiting 2 months to get approved for medicaid. Pretty done all the way around.

Pain management...right. I would laugh if it didn't hurt so much.

Having a Functional Capacity Evaluation, which your doc can then use to fill out RFC forms with, or a questionnaire prepared by your attorney or non attorney rep, will likely cover much of what you need, so long as you're pursuing aggressive treatment and going to your doc/s at least once a month. It also, just takes time to generate the type of records SS expects.

If it turns out you will need a cane or walker long term, you might just qualify for SSDI with a Listed Impairment--which could mean a faster approval.

There are certainly Medicaid patients receiving pain management care. Another option that docs might be more willing to prescribe than opiates is methadone. There are lots and lots of different options! Most of us are still trying new meds and treatment options even if we've had RSD/CRPS for a decade or decades!