CRPS/pain syndrome. is it time for a mobility device. Embarrassed.

Yup. Like you said. Exactly. So yeah, like Disney, putting ourselves last and for what? The next days or week when everyone talks about the great time we all should have been having, I will have let my ego decide to not care about my body. This is exactly the reason for the "is it time" post. Even to just save spoons so the days I go even to PT for 30 minutes, life is done that day. Or psychotherapy - that's it for life that day. Maybe even food unless I drive thru McD depending on energy from rarely more than 4 hours sleep for months now. If you see what I posted below, I need a swift kick before it's all gone. I'm already feeling way older than I should. I am not ready to start the slippery slope.

About aging, I actually have been doing mostly good - esp lamictal helps me some - with depression as well. It's COVID in July of 2020 that brought me to my knees. Tho not literally of course! God forbid me trying to get up.

I'm starting to work with habitat who says they can help me get a walk-in shower, stuff to make life easier just in the normal aging process that is not about sick me. I can't find homecare help that Medicare will pay for so it's all on me to find out how to make it work.

I hear you and thanks for sharing. Funny about the shared childhood experiences. Maybe those hits to our adrenals when we are young leave us wide open to many manner of autoimmune issues. I know I have several. Stress terrible for the adrenals. And no kids get out of their teens without adrenal hits. It's why I also take LDN plus a plethora of supplements since COVID.

BTW, it was my 3rd back surgery for slipped disks via an on the job injury when I was 23 and lifted a patient, that caused my CRPS. I woke from surgery with a huge, bright red, burning foot. The kind like yeah, the surgery 4 hours ago on your back is nothing compared to this FOOT! I didn't know at the time, when they called it causalgia how fortunate I was that it was diagnosed day one. The surgeon knew exactly what it was but just told me, told me it was not curable, it was like this for life now, and walked out. I was still hazy from anesthesia. They know so much more about it now. There was zero treatment. It was assumed he cut or damaged a nerve. I discovered I had a civil war injury and that was it for life. I used crutches for 25+ years and eventually had a few remissions. I was out on depakote for seizures before they even knew it helped pain. I was part of the clinical trial back in the 80s. For Neurontin also. At some points, depression was the worst part of CRPS. 23, career and life gone, I had moved 2000 miles from home for a great nursing job when I was 20 but now, back to my parents house, SSDI, 3 months in a chronic pain unit back when workers comp paid for things. and shortly, totally on my own. By choice. And now 67. Who knew a thing like a pandemic would be my downfall. Feeling hopeful right now tho.

Thanks for sharing. Be

Jump to this post

Learned the hard way. Use Word to type a response then copy & paste. Website has malfunctioned a couple of times where it loads forever then errors out.

Wishing you the best. It helps reading about other peoples' journeys. It also gives me an opportunity in this day and age beyond what feels like electronic means to have a real conversation that doesn’t involve tweets or the like in length.

If you could find loophole in Medicaid's handbook, then suing for administrative argument, you may get off cheaply and may get the help you need. Maybe, even have them pay for it, like the story below. Some medical equipment companies accept payment plans. Not sure about medical equipment grants either.

Is there a way to file a reasonable accommodation with Medicaid, and in an extraordinary circumstance such as what I read in your posts, get what you want/need? Google is your friend when looking at keyword searches. Medicaid is a Federal program and they view transparency as important. I can't post websites: "Medicaid Handbook 2022", choose The State Medicaid manual – CMS. By the way, those free attorney consultations that you see on websites or the Yellow Pages can give you access to free information. Educate yourself and fight it if you have to. Use CTRL and F to keyword search within the PDF document or website.

I fought Wyoming Worker's Compensation for years and made them pay for everything. They didn't get out easy. Mayo Clinic alone was $26k out of pocket. Found a loophole when they deny a claim (within your working claim / i.e. many specialist doctors -expensive), you can sue them and they will pay for it. My parents read the handbook and played the game. We won with the exception of not understanding the full settlement terms even with the NY Hospital for Special Surgery saying disability of 25%. They paid a mere 8% disability. Shame on them, stupid me. My point is, educate yourself.

Mental Toughness:

These days I hear from quite a few people that say I am being too hard on myself. I feel I have to stay disciplined in my mind because if I relax it may go away, but generally, short-falls hurt and I do all I can to make things right. That changes a person. Do it enough and the power of brain neuroplasticity begins. Like the saying goes, use it or lose. The same works in reverse and in physical therapy is where I saw this phenomena. I typically listen to YouTube, best motivation or self-motivation, when I feel all depressed, down on myself, abilities, lack of knowledge, low self-esteem, severe flare-up pain which causes a different set of emotions counteracting and causing problems amongst themselves. Yay.

Although not likely true because CRPS does cause mental issues over the long term. My opinion is because the body is in constant flight or fight mode and consciously knowing this reality is a fight between systems. I think to some degree we tend to beat ourselves up when life isn't perfect, doesn't feel perfect, and television, magazines, social media tells us what to think. I believe in a clinical setting and a professional environment you will not be judged. I have a quote I keep close by as a reminder for how far I've come and that life is always changing.

You may not be where you're supposed to be. You may not be what you want to be. You don't have to be what you used to be. And, you don't have to ever arrive. You just need to learn to be the best you can be right now. -Unknown.

Wishing you the absolute best and hope you do make the journey to the Mayo Clinic. The three weeks I was there was a very good experience.

Jump to this post

Fantastic, @chuck406, I did not realize you went. When did you attend the Mayo Clinic Pain Rehabilitation Center? What was your best takeaway from the experience?

Jump to this post

Hi @bebold. You have some good, progressive thoughts flowing in a positive direction. Awesome! Yes indeed, Mayo PRC helps with sleep hygiene, and definitely gets you motivated and reawakened. Having a team of professionals and peers encouraging you for 21 days is quite remarkable. It was an experience unlike I have ever had, which is why it was truly life changing for me. If you can make it work, by all means GO FOR IT! Understand that it'll possibly be the hardest thing you've ever done, but most rewarding and worth while.

Not sure if you have explored the Mayo PRC site yet, here you go...

Mayo Clinic Pain Rehabilitation Center -

- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

You also can apply to the PRC program directly through this link -

- http://mayocl.in/1mtmR63

You've been through a lot these past few years. I'm so sorry about your Mom. Your psychologist is spot on. I'm glad she is advocating for a forward moving plan.

I hope your week kicks off right and you continue to feel motivated. Looks like you're in control of that magic wand all on your own. I'll just poof you some good, positive vibes of support. Keep up the good work! Will you update me on any progress you make going forward?

Jump to this post

Chuck a word of caution with Oxy I took maximum doses for 4 yrs. and finally got off of it last year because I keep falling down and breaking bones ( broke both of my wrists and knee cap) be careful!

Jump to this post

1. Insurance affirms 100% payment.

2. Completed online application.

3. A little fearful and mostly hopeful. Maybe I won't need to think about a wheelchair! Kickstart me back into life and out of constant fear of an uncertain future.

Thanks! Be.

Jump to this post

Okayyy, I see you, Be! 🤩💪Congratulations on taking the first big step. I was fearful too, right up to the day I was actually going. As you say, "mostly hopeful" . That is what will keep you focused on the prize. I think you know that you're worth it.

Do you have a good PCP who has your medical records history all together and will gather it to submit by fax to Mayo? Self referring is a good start to begin the process. Sometimes it's best to have your doctor refer you as well. Will you keep me posted after you hear from Mayo PRC and they advise you on the next steps?

Jump to this post

PCP is working ASAP to get records faxed. For sleep reservations at air BnB, I need to schedule very soon and I need to go before the prices go up for the winter. So, I'm hoping its a soon acceptance or it's possible I would have to wait till April/May and that is not a good idea for me to be 6 more months in bed. I don't know that by then, my "sleep" money won't be spent on a wheelchair or my hope will have waned. So, it's out of my hands except to keep on my doctor's staff to "ASAP" and understand why. In face, I have another doctor who could send records as well, they would be duplicates, contain no additional knowledge and I know she would take at least a month or more and would most likely want to see me first and she is booking many weeks out. So I'm not even asking her. If I thought it was important documentation, it would be different.

That's the poop. It's already being hard to find an affordable place to stay for a month so just waiting. What will be, will be. Out of my hands. Staying hopeful but can't stress about it. Thanks. Be.

Jump to this post