Finally getting a diagnosis has helped a lot.

Getting a lawyer for my SSDI case, is also helpful. But...

How am I supposed to rehab my darn knee that started all of this if I'm in pain and swollen for 2-3 days after a simple PT eval???

I am struggling (ok, battling insurance) to find a neurologist who will take medicaid and actually knows something about RSD.

I am not seeing anything in the road ahead besides the bumps that cause increased pain.

I am trying so hard to get back to normal. Back to work. Back to life. I am almost to my 'quit date' with smoking. I only have my final clinical exam left before being able to take state boards. I only need one form from my last employer to reinstate my IL LPN license. I only need a copy of my title to get my car plated in IL. I'm tired. I'm hurting, physically & emotionally. I can't go and see my new grandson. I'm going to have a hard time moving at my daughter's wedding.

I need hope. I need someone to enlighten me on how to move forward. How to get help with the pain. I'm used to being on the other side of this. I need help learning how to ask for help.

Remember Hadrian - Brick by brick good citizens of Rome...

It is easy to get run down by the tenacity of this damn disease. I think it is especially hard when the logical, goal oriented part of our minds tries to comprehend why we aren't getting anywhere fast. The things you are dealing with, pending exam, SSDI, licensure; all those would be stressor annoyances to anyone who was not in pain. Pain makes you tired, wears you out emotionally and physically, steals your resistance. Some days just doing your ADLs takes fortitude. To work around this you must approach the large goals in smaller components that are achievable and give yourself praise for meeting the smaller goals. This is the new normal, you still deserve praise for doing less than you used to!

The smoking cessation date will arrive. Getting the form from the employer sounds doable. Every smaller goal you meet will make you feel stronger and more accomplished. The large goals will diminish in chunks, not all at once. Do as much as you can and forgive yourself for the rest.

Are you able to get to a pool? I don't remember... I can't say enough about Aqua therapy when everything else is causing pain. Can you tolerate any sort of compression or ACE wrap? Have you tried kiniseotape? I find it helps with swelling and microcirculation (my skin looks normal color underneath as I take it off then goes mottled). I wear it for a few days then stay off a few. I am sorry for the bumps in the road. They are tiring and frustrating, I am sick of them myself but don't see any other option other than to get as much life back as I can and try not to be devestated by what is missing. For another inspirational quote I'll go with Churchhill "If you're going through Hell, keep going!" Hang in there sister, cuz you can't give up till I do and vice-versa. And Skype with the grandbaby when you can if you aren't already, not as good as smelling their little heads but at least you get a visual.

Sending extra Healing Love,
Littlepaw

LP

No access to a pool. I have a (smaller) whirlpool tub in my bathroom, but it's incredibly difficult to get in & out of and I can't get the jets to the right places/right intensity (even if that means "off").

Most days I can make it to the commode, I put the same clothes on that I dropped on the floor in the potty palace the night before while sitting on the commode. I can make it to the sink to wash my hands/brush my teeth and back to my bed to take my meds...and/or walk downstairs to let the dogs out and back upstairs to complete the above tasks. At that point, I'm spent for a while. Sometimes it's only an hour, sometimes it's several hours, sometimes it's the rest of the day.

I can stand. For about 10-15 minutes before the intense tingling/stabbing in my foot starts. I can walk without the tingling/stabbing for about 50-75 feet before the shooting pain in my knee starts. I feel like if I could rehab my knee more, I could rehab the peroneal palsy a bit. But that (knee pain) is not really being addressed. The PT that did my eval suggested (several times) that I contact my ortho about pain management. That is incredibly difficult for me. I tolerate pain pretty well and can be laughing with a pain level 6-7, but it gets to an 8-10, I'm quiet or crying. My experience with my endo pain years ago (before the major "drug-seeker" movement) was a rough one. Probably what makes me not want to ask for pain meds. I don't want that label. Funny that I didn't become addicted when I was on 20mg oxycontin twice/daily with 10mg oxycodone for breakthrough every 4 hours for 8 months.

I think I'm just tired of the tendency of those around me to disregard my pain as though I'm not really in pain at all. That perception contributes to me not discussing pain management with my ortho. Please tell me I'm not alone thinking/feeling this. When in the process did you think/feel this way? How did you deal with it? How did you begin your conversations with your MD to address your pain? What about family/friends?

I don't know that people who do not have pain can really, truly understand what it's like. I think I don't get tired of them not understanding because I simply don't expect them to. Having worked in healthcare for years and years in hospital settings I can honestly say I had no concept what pain was really like. It didn't matter what my training was, how empathetic I was, how many patients I was around on a daily basis. It didn't matter that I'd had root canals, kidney stones and given birth. Until this nerve injury and CRPS business I STILL didn't get it!

The only people I expect really understand are fellow sufferers. My mother has MS so is sympathetic, my best friend has a badly herniated disc and was laid up for months. I find I excuse everyone else, seeing as for a long time I too was like everyone else and had no idea what this was like. That's why coming here is helpful, people understand. It is really important to have the conversation with your ortho about getting more comfortable until you have a PM doc. It is not a failure to admit this crap hurts. You have identified nerve damage, that's a legitimate as it gets. The pain is not helping you get better, it is slowing down recovery. Don't be stubborn about asking for help with it. I was just frank with my doctor about needing to try something else. Broach it as a short term solution until you have the right specialist. Explain that you need to rehab, they are used to people hitting a wall sometimes. Start with something low end like tramadol if you don't want to ask for the heavies. Don't give up on the pool. A whirlpool is not the same, it's the non-painful gait and standing that you need. Community /senior center? Private club? Y? hospital? What does PT say about where you can go? Sometimes assisted living facilities or retirement communities have them and will let you come in for a nominal fee. Let people know what you're dealing with, ask for help, they may make an exception on access.

Don't give up, the PT eval was a setback but gave the therapist starting point. That means you are moving forward no matter slowly.

Littlepaw

AB,

I wish I could enlighten you on how to move forward, but all I can do is offer a relative perspective and hope it helps.

I found comfort in a really strange paradox. Hesitate to write about it because it might not make a whole lot of sense when put into words.

But here goes. I would point first to your screen name.

I always believed there IS a reason for everything. In Einstein's words, "God doesn't play dice." (Paradoxically, I didn't believe in "God" either, but this forum is about healing from RSD rather than religion.)

That belief led me to many understandings, because within my own relative experience, it turned out to be true.

The first and maybe the most important understanding was this: just because I disagree with something 100% - just because it makes no sense to me - doesn't mean it's not 100% logical.

Saying that "There is a reason for everything," is the same thing as saying "Everything has purpose."

And eventually I came understand that everything - even accidents - are actually purpose veiled by my own ignorance.

That started with openmindedness. A willingness to admit and then to accept my own ignorance. My own powerlessness. And that's what I hear from you AB, and that's why I wanted to post, even though this could just come off as a crap ton of nonsense.

But then how to apply openmindedness to where I was? I mean, how would any of us here on this board apply something like that? Where I was, was in excruciating pain and suffering that looked hopeless from every single angle I looked at it. To truly apply "there's a reason for everything" would either be saying that this is 1) God's fault, 2) someone else's fault, or even worse - 3) this is my own fault.

Now that's a scary thing. But I didn't have anything to lose. My worst fear was helplessly withering away in pain hurting all of the people I care most about, and that's exactly what was happening.

So I surrendered. Admitted I didn't know CRAP. (And still don't.) So I went with option 3 - this is my own "fault."

But the key - and I can't say this enough - was in how I went with option 3. Rathering than putting blame on myself for how things had turned out in my life, I accepted responsibility for it. All of it.

And I know that sounds like a bunch of fluff... philosophical BS... but I can't overemphasize how important this was. For me at least. Accepting responsibility versus Placing blame. Two sides of the same coin. Truly different perspectives.

This led to the craziest paradox. Admitting and accepting that I was completely powerless - surrendering to it - actually gave me the power to change. Accepting the fact that everything that had transpired in my life had led to this moment, right now... Regardless of how "good" or "bad" I was in the past, HERE I AM.... it was a fundamental shift in perception for me.

What it did was two things:

1) Allowed me to forgive me, God, and everyone else for how awful my life had become.
2) Set a clean slate for the future.


PS. Many of the reasons as to why we have to deal with something as awful as this aren't definable within our current perception of reality (ie this space of time we're occupying from birth to death.) That's why this is so tough. (Understatement of the century. Or millenium.)

And most importantly AB - KUDOS to you for everything you're doing.

Addiction to pain meds is a bad thing because your quality of life will always be reduced. Dependence on pain meds can be acceptable, if quality of life is improved with them.

You need to concentrate on your own acceptance that RSD/CRPS can be a long term, life altering, medical condition. Your family and friends opinion of your health is their issue, not yours, and you need to stop focusing on it. If they stick around, they'll figure it out, and if they become less involved with your daily life, than you'll need to adjust.

Even those that have supportive family members in the early stages, often find that they are lucky if they have even one or two people they can count on long term, in any type of meaningful way. You can help: by actively learning to adapt, seeking out a therapist to learn how to adjust, and not having any unrealistic expectations of others.

From your postings of how you're struggling physically, it seems unrealistic that you can get through your RN testing. And if by some miracle, you do manage to get through it, the result might very well be that it undermines your SSDI claim. This is an example that would very likely confuse your family and friends, as well. If you can't accept the new limitations your facing, how can you expect them to?

What happens with RN candidates that are wheelchair bound, btw? Are special accommodations made for them? If you were in a wheelchair, could you manage the testing more easily?

Vis~
Thank you for your input. Without going into the long sordid tale, I grew up with blame for everything placed on me by my parents. Everything was my fault...but only if it was bad. If something was good, I had nothing to do with it because, according to my parents, I would never amount to anything.
Which, in essence, means I've was raised under #3. When my son was diagnosed with a heart defect, I blamed myself. Never was I responsible for promoting (and even providing) the quality of life he had for nearly 18 years. Something I did almost single handedly. When he passed away, it was my fault.
My adult life in the 9-1/2 years since then has been spent trying to undo all that my parents had me believe for so many years. Letting go of the responsibility of everything bad being attributed to something I did, or did not do. Letting go of placing blame, period. However, stating that something just 'happens' is outside my heart's makeup. Something/someone/somewhere played a part. I have discovered there is a difference between acceptance and acknowledgement.
My screen name is what I keep trying to tell myself, not what I truly believe. As much as I wish I was that strong person everyone thought I was raising my son, I was not. I failed my other children when their brother passed away. And I am failing myself now.
I am trying to push forward. Trying to recognize my limits. Some days I don't want to try any more. Some days I want to try harder. I'm trying to keep trying.

LL~
I definitely recognize the difference in addiction and dependence. I suffer from neither. Never have-even in the height of when I was on some serious meds. At this time, I don't have that option. Coming from the 'provider' side of things, I hear it discussed all too often and I don't want to be one they are talking about. Hence, the reason I am not asking for anything...and I suppose, ergo the reason my rehab most likely won't progress.

See my last reply regarding acceptance and acknowledgement. Although I am not certain that I cannot come to a place where both fit into this little struggle of mine. I'm also not certain I can, so I will stick with acknowledgement for now. I have only recently begun the whole responsibility for someone else's emotion is theirs not mine, so I needed that reminder.

My expectations have remained the same - help move boxes/furniture so I can maneuver/go through them and help get some (a lot) of items ready to sell. The conundrum of "independence" and "consideration" have been a subject of conversation, in that I have attempted to squash the notion that notifying me that you will be out for several hours isn't 'answering to me', it's allowing me to adjust my location to enable me to reduce my walking if something comes up (dogs need to go out, someone at the door, a meal, etc.). Would it be nice to be offered food when my pain level is such that I only venture to the bathroom twice in 15 hours? Yes. But I have learned to address that better and not place that onto someone else as much as myself for not mentioning it in the first place.

Ahhh...the dreaded RN exam. The program I am in requires a 3 day final exam. It consists of writing the care plan and performing the care for 5 patients, as well as demonstration of skills in a lab. The requirements to take the final exam are completion of necessary/required coursework, the ability to provide patient care, including positioning, transferring and mobility. That's where I don't meet the ability. Accommodations are made for the mobility challenged by: reducing the number of patients to 3; ensuring patients are located close together; allowing extra time and extra rest periods. While the accommodations would suffice - I cannot meet the provisions to providing patient care. Neither could someone in a wheelchair. Perhaps extra accommodations would be allowed after speaking with administration, but I seriously doubt it and either way, my PCP won't complete the paperwork until/unless I can meet the primary requirement.

I see the difficulty with SSDI and obtaining my RN, and I would much rather have my RN and drop my SSDI claim. The difficulty comes in when I am unable to attain either. At this point, PT thinks there may also be an issue with my hip and is insisting I use a walker at all times. That effectively removes me from the ability to take my final exam, leaving me to focus on my rehab and let my lawyer work on my SSDI claim.

[QUOTE=Always_Believe;1131235][FONT="Comic Sans MS"][COLOR="Purple"]LL
At this time, I don't have that option. Coming from the 'provider' side of things, I hear it discussed all too often and I don't want to be one they are talking about. Hence, the reason I am not asking for anything...and I suppose, ergo the reason my rehab most likely won't progress.


Hey Girl,

I have been sitting with this statement for a bit. At first I didn't want to respond because I have to say honestly that it made me kinda mad. My first thought was What? no! Rehab is probably your best shot for improving your functioning and I don't really believe you would throw away the opportunity over what looks like pride and concern about what others think. I am hoping you made this statement out of an abundance of fed up-ness. I don't know how many articles I have looked at that stated the aim of a sympathetic block was to bring the pain down enough so people could rehab. You need rehab to function better! It was difficult to get, don't blow it by not participating fully. Orthopedists deal with people needing pain control so they can work in PT, this isn't unheard of. So what if they talk about you? It's your life, your body, your outcome. Focus on the long term goal, getting some life back and to hell with what people think. We have all lost vanity and pride over this disease. I lost mine dragging myself across the floor on my butt for months to get to the bathroom when even being up on crutches was too much. This wrecks havoc on pant seats, I gotta say. The only reason I don't have to do that anymore because of rehabbing persistently.

Have your fed-up day, we all do, but then let it go and move forward even if just a little. You got PT to go to after all...

I am sending more Healing Love,
Littlepaw

PS I apologize in advance to you or anyone else who might take offense at my post. I am not mad at you. I just feel strongly that we have to take care of ourselves even at the expense of our self image and regardless of other people's lack of understanding.

LP~
I love your honesty. I love you rooting for me, on my side. I don't get to have anyone on my side. No one roots for me.

As for the statement...I wasn't referring to blocks...given that my ortho has only seen me twice and has a hard time swallowing the "RSD thing you speak of", I don't think he would start with a block. I hate being 'that guy'. I was 'that mom' for years when my Adam was in school/hospitals...I had to be, he couldn't. I hated that.

My PCP won't refer me to PM yet. I got a referral to neuro but I can't find any in the area that will take the medicaid plan I chose. Nor can I get my insurance to assist with the issue. There's a neuro who also does PM that shows up on my plan, but he sees patients in WI and I can't get a clear answer as to whether or not IL medicaid will pay. See, he's on the consult list at the local hospital, so that IL address shows up on the insurance list first...with a WI phone number that is the billing department. I know this because I went through 15 pages of neurologists. Looked them all up. Crossed off the ones dedicated to pediatrics and sleep disorders. Crossed off the ones dedicated to Alzheimers and that had horrible (and I mean horrible) reviews. Called the rest of them to confirm if they accepted my plan or not. I was left with this ONE in WI. I don't know where to go from here.

I want to rehab. I WANT to go back to what I have loved my entire life. What I have wanted to do since I was 5 years old. I buried my son. That should have been enough. It wasn't. There's more. Someone out there somewhere won't be satisfied until I have lost everything.

It won't happen without a fight. I'm gonna get bruised, battered, broken and torn. Some days I might be shattered into a million pieces and cannot see anything beyond my tunnel of self-pity. I am grateful I have you all to put a band-aid on my wounds and pull me out of my tunnel and back into the ring.

I'm waiting on a call from case management with my insurance. I'm sure that call won't come. So I will call my insurance again. Until I get an answer, I will call. I have an appointment with my ortho next Monday. I made a mistake when I made the appointment, so I will ask to speak with the nurse when I call to cancel that and make a new one.