struggling – day 121.month 4
4 months.
This drags on and on.
It’s funny how quickly we adapt. At the same time, i don’t want to adapt to this. I don’t want to accept this. I am not okay with this.
Exactly four months ago, I was crying, accepting my fate while hurt by the fact that the foot i once knew would never be the same again. No matter what..there was no turning back..
Exactly four months ago, I signed the papers saying whatever happens is out of my control..
Exactly four months ago, I got an iv, a nerve block, “do” written on my right leg, a paper shower cap for my hair, and away i went.
Exactly four months ago, I woke in shrill, unbelievable pain. The pain that makes you tap your fingers and toes..clench one hand with the other…anything to distract..anything to make it more tolerable while waiting for it to be over..But unlike a shot of anesthetic, this wasn’t a simple 10second injection I had to wait through…this was the state of being.
That’s okay though. That was four months ago.
Four months ago, i had surgery…bones cut and drilled..tendons cut and relocated…muscles and skin cut and stitched back together…After all that, of course I had pain..
Totally expected and reasonable. Four months ago.
But now, it has been four months.
My bones have fused, the tendons unpacked in their new locations, scar tissue formed, and muscles began to regrow…Everything physically shows a phenomenal job; an ideal outcome. Everything structurally turned out exactly as one would hope – the calcaneal shift wasn’t too far or too little…the lateral lengthening that wasn’t done wasn’t needed…no major nerves were cut, no post-operative embolism or issues with the bones fusing…everything went beautifully.
And yet that pain remains.
It comes and goes – never hitting the absolute be-all-end-all it was immediately post-op. But it has yet to leave..
It’s not predictable, nor is it satisfied remaining in a single, pin-point location. Instead, it feels best spreading out into any region that has the potential for it to plant roots. And it wavers and settles and surges and flitters..but it never goes away…
So here I am…four months later…
And so is the pain..here..four months later.
And I can’t walk unassisted..and at times, such as an hour ago, out with the dogs, a boot, and a cane…even with assistance, it still is not enough while each step is embraced with enough pain to cause my breath to stutter.
Other times I’m more fortunate. I can make it into a store for 15minutes with a boot and no cane..Do some things around the house with just one crutch…
Like I said, it’s never predictable. Never consistent.
So here I am, four months later.
And here is the pain, four months later.
If it hurt…still..always..but I could still walk…If I could trade the spikes of 8 plus the lulls of 2 for a constant 4…a lot of ifs. But none of them are…
So here I am…
and I try to keep my head up. Try not to think about it and just push through – the same way as it was pre-op…really seeing it for what it has potential to be..really seeing that…this is now four months…there still is hope, but i’m starting to walk toward that line of a very undesirable, permanent state of being…I don’t think about such things..don’t think about any of it..just keep on keeping on as I know that such thoughts serve no purpose and will only destroy me…
So I bypass them…keep up with the concept that this is acute…this is post-op…this is transient..and really…just no concept at all..just going..doing..being…stand up each morning and reach for the crutches…that’s just how it is…
But I tire. After four months..the ease of a handicapped parking permit has long since lost its novelty..the kindness of strangers opening doors…asking what happened…telling stories…standing out at the gym as the crutch girl…being incapacitated..uneven..unable to compete properly…
I like swimming. Though I’ll never be able to truly flip both ankles like Michael Phelps, that is the one place left in the world where I am still on even ground. The moment I enter the pool, the field is the same for me as it is for those next to me. If I put everything into it; train with everything I have…outside of the normal genetic predisposition that provides advantages to each of us in certain arenas, I have just as much chance of winning a race as anyone. On land..I could ‘train’ with everything I have..but I can’t win a marathon…I can’t even walk one.
I’m tired of the inability and immobility. I’m tired of being incapable of covering my differences; hiding weakness.
I’m tired of standing out.
i know that others have issues permanently and i shouldn’t whine. I still have a chance..
I still can drive..I can stand..I can odd gimp around the house when I have absolutely had it with crutches..I can ride a bike trainer (though I can’t bike outside as true hills…my ankle will NOT allow)..there’s a lot i still can do…and a lot other people out there will never be able to do again..
I still have legs. And feet.
When i get out of bed, I don’t have to reach for a prosthetic..
If there was a fire while I slept, I never need worry how I’m getting out – I still could gimp…
So I shouldn’t complain. I shouldn’t whine. And I know this. But sometimes, ‘shouldn’t’ gets run over by reality.
And reality is…this is wearing…
Overall, I don’t think about what’s going on and what my prognosis is..I really don’t..Up to now, I suppose there has been no reason..It was post-op..It was acute. There was no reason to begin to think otherwise. But each time the calendar page turns, a little piece somewhere deep inside wakes up. A little piece that gnaws at the bars in which I hold it..
That little piece..the dates that keep passing…the changes that are minimal to unexistent..i put on blinders. Carry on. Ignore.
But sometimes..the blinders wear thin…the energy wears out..and that little piece raises the doubts…
Sometimes, it’s all I can do to not be pulled under.
So I return to the pool. The world where I’m equal. And i still might be have issues breathing while swimming, but I’m working on that..But even if all I ever do is the backstroke, sidestroke, and modified crawl…it doesn’t matter. In the water, i’m the exact same as every one else there.
I’m not an invalid..I’m not incapacitated..My foot may act up, but it’s never close to the degree it does on land…instead, it becomes just another body part…a lot of them have complaints..so be it..
In the water, I become whole…and wholly capable.
i miss that. i really do.
sympathetic nerve block –day 120 (17wks 1 day)
One day short of exactly four months, I returned to the hospital where I had my surgery – this time to have a sympathetic nerve block.
As directed, i showed up an hour early, filled out paperwork, got put in a ‘room’ (partition), got my stats taken, and got an iv. (Though painful, this one was nowhere near as bad as the one I got pre-op…I still hate getting them though!)
And then, I got to wait…and wait..
Similar to last minute thoughts I had last night – such as for the first time, starting to really think about the procedure and immediately finding myself queasy, I began to worry.
Amazingly, for the first 20minutes of waiting, I managed to ‘read’ the only magazine there was nearby..but then i reached the end and…my brain began..I’d never met the anesthesiologist before..as per his online profile, he’s a year younger than me (a. makes me feel old since i’m transitioning from the world where all doctors are always at least 20yrs your senior…b. makes me feel that he can’t possibly know anything/be an experienced doctor if he’s only my age!..)…anyway, my brain began a stream of doubts.
He arrived about 10minutes late – which, for my brain, was just in time as it only allowed a good 5minutes of spinning last minute doubts. Were he an hour late, I would have either needed a sedative, would have left, or would have again entered the zen calm that from time to time i find myself oddly falling into during this process when I know that there’s nothing i can do to change things and..what happens..is. (Perhaps it’s some kind of ..so anxious that you come full circle, breaking through to the side of complete acceptance?)
So, he showed up and almost instantly, I thought he was great. He reminded me of my surgeon which is a wonderful thing..Unlike the MD I met with at the pain clinic, he seemed a lot more approachable/reasonable/open..
He pulled out a piece of paper that gave a basic overview of the process. While showing it to me, he said that there is an organization that makes the rules and declares specific criteria for CRPS. And some people clearly follow in that criteria – they have a, b, c, d and have them all at the ‘expected’ levels. But not all people are that clear…some have some symptoms but not others..and it’s not a straight forward condition. So, he prefers to go off of clinical analysis and looking at the particular patient instead of simply, blindly following the exact specifications declared. This was actually quite similar to what my surgeon had said previously (e.g. the concept that it’s not black and white like a broken bone).
Following this, he stated that this procedure wasn’t to eliminate my pain, it was a diagnostic test for CRPS. This was the first time anyone had said this to me – as per his assistant? for all intents and purposes, I’d be pain free for a long time..No one – while making the appointments, or when first calling me back to bring up the block – said why/what the block was really for. I figured it out based on the procedure he was doing, but if I hadn’t, I would have been in for quite a surprise given what I was told.
He showed me the overview paper while stating that the other doctor at the pain clinic might have already shown me this..I said no..I told him I had asked the other doctor about a block as my surgeon had sent me to the clinic listing it as one of the things they could do for me, but was told that I didn’t need one..and then the next day, got a call that he (the anesthesiologist/head of the medical section at the clinic) had reviewed my file and wanted to schedule a block. He then said something along the lines of ‘yeah, that’s basically what I was saying along the lines that some people follow the strict a,b,c whereas i look at the individual case and try and see if there’s something we can do that could help this patient.’
The likely underlying message got through, though he said it pretty tactfully – but then, entertainingly, he followed it with something along the lines of ‘that’s my politically correct reply’.. Which made me think he was all the more spiffy as I really didn’t bond with the other MD…The other MD seemed a black and white a2+b2=c2 approach while…patients are people and don’t always follow in the spots you have preformed over the many years you’ve been an md.. (maybe the fact that the anesthesiologist was my age isn’t such a bad thing after all)..
Anyway, it was something along the lines of …i felt quite frustrated after the clinic…wasn’t warm and fuzzy about the md I met there…this made me feel all the more stuck with this whole thing…meanwhile, i’m meeting another potential md that i might be able to work with and not only do i feel like he’s easy to talk to, he seems to have some similar opinions as i on treatment/patient approaches…andddddd i was in high-worry mode as it was right before the block – and he immediately put my mind at ease. so, all of this combined meant I thought he was mighty spiffy.
Soooo on to the point – he showed me the sheet. None of it was unexpected as I of course had already read all about it 🙂 But it had the basic outline – they give the local anesthetic, followed by ink, followed by the final anesthetic. He then took the temperature of my feet and went in to the room where I was to meet him..
The nurse wheeled my bed into the room (holy cold!). She was there, an x-ray tech, and of course my doctor.
They had me get on a narrow table, put a pillow under my hips, one under my head, and one under my feet. They lifted my shirt, pulled down my pants in back a bit (plumber level) and tucked the blanket into my pants. My back was cleaned and then they started doing who knows what to prepare. During this, my anxiety began to increase..I was partially okay – I knew why I was there, liked the doctor, and was okay with it..But I was also part…quite afraid…So I was contemplating asking if they could give me something and right then, the nurse verified with the doctor that she’d be giving me fentanyl and versed. Woo.
When she said it, I asked if she was referring to a pre-procedure calming thing…The doctor then said yes, but i could have as much as i wanted – was i worried about being given it? I replied emphatically that I was worried about not being given it…Please, make my iv worthwhile!
And so she did.
Within moments, the world was okay..whatever they were going to do was…okay..
The doctor asked what music I liked to listen to and much to my surprise, he found it with his iphone which he then put on a table near my head…This was even more surprising to me as – I had music with my mri – but it was in horrible old airplane style earphones…this – we were all in a small room together – what i heard is what they heard…so, i thought that was pretty great..Though as soon as I realized what was going on, I thought (but didn’t say as i was..out of it) that it should be what he wants to listen to – after all, he’s the one with a needle near my spine.
He then gave me the local anesthetic injection and oh yeah, it hurt…One of those moments where you tap your foot/your fingers/squeeze your hands together…anything in an attempt to distract and offset while waiting for it to be done..Undoubtedly though, the pre-procedure drugs helped..
A short moment later, he began with the dye and then the final injections..With each needle push, there was definite pressure..It did Not feel good..It wasn’t sharp pain like the local, but it was not a pleasant thing..again though – i’m thinking it would have been quite worse if i didn’t have the iv drugs..At the very least, I would have tensed up, anticipating each future push of the needle – which definitely would not have helped anything..
Three songs later, and he was done.
Again – three songs..about nine minutes…no iv drugs..i wouldn’t have held up so well.. with them..it was done before it began..
He then showed me the x-ray screen – where the dye was and where they don’t want it to be (which, it wasn’t). Again, the temperature of my foot was taken and I was wheeled out.
My foot definitely began to warm and turn red.
After about 30min, he finished with another patient and came out to measure my foot’s temperature again. He then tested sensitivity to touch which, same as before, most spots on my foot were dandy..But to my surprise – the yucky lateral spot (which I have been working on desensitizing *every* day) – it felt weird…not ideal…I wouldn’t seek out someone to touch it, but…I would be fine if I went to PT and they wanted to massage the area..it would no longer make me smacky..nor did my foot auto-jerk away when he touched it.
That was quite a change..But I wanted to know about what was far more important to me – walking.
So, I got to try it. And I could walk!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
It hurt. Oh yes indeed. But I was able to heel-toe push-off with NO crutches.
My knee didn’t buckle..again – pain and then some, but it hit a 7-8 while I completed each step. Normally, it hits an 8, my knee buckles as any further pressure would hit a 9+ and I don’t even have the option of carrying on..
I was elated. On the one hand, given what the response to the block could mean, as mentioned, I don’t want it to work..but…all the same..to be able to walk again – if only for a day..even in intense pain…to even be able to..four fucking months…it’s crossing from the acute to the chronic…it’s begun to raise the question if i truly will ever really walk unassisted again..the longer it continues, in my mind, the more it raises the potential for my body to begin making permanent/associated changes…changes that lock in this new way of being…the – i can fix it now..but if it’s not shifted back to normal now…this will be the new normal..
To walk…no boot…no crutches…
Part of me wanted to cry.
I was given a pain diary sheet to fill out and was released…
When I got home, I couldn’t sit down. Though irrational, I had this feeling that if I stopped…as long as I kept on my feet, kept walking, I could keep the miracle alive..but once I sat…once I rested…it would all be over.
I put away laundry, put together some IKEA boxes while standing (and doing a heel-toe rock that had full weight on my bad foot)..ate while standing/pacing…anything to keep on my feet..
During this, the pain actually dropped a bit – from a 7-8 to a 7 – with at least a layer of the pain being an arthritic stiffness/lack of proper use for 4months..
I then remembered my treadmill that has begun to gather dust…I walked 1.2 mph for 10 minutes…By the end of the ten minutes, the pain had begun to increase..It had been about two hours since I got home, so even had I sat instead, I think it was simply..time was up…
During the last two minutes, I had to use the treadmill’s bars to hold some of my weight…and, shortly after, though I was still trying to continue on unassisted, I had to go back to one crutch.
What it all means…perhaps placebo effect…perhaps the pain killing power of the fentanyl + the relaxation of the versed made it possible…perhaps it was the block…I don’t know..And what happens next…I’m still trying to get a follow up appointment scheduled.
But for those two hours…I once again was full of awesome. Full of pain, yes, but..I was on top of the world..I was walking again..
yep –day 117
day 117 on 1.17..fascinating, i know.
and today is Chris’ surgery. Hi Chris. I hope it went well!
Moving on to the post…
Again, not much to report. My nerves are still on low – but they still are ‘on’. This means that I do have moments here and there where I forget about my foot – which is a lovely break after all of this..But they are far overshadowed by the rest of the time when it hurts/cramps/burns…just not severely so.
And I still haven’t written about the pain clinic…I really should do that before time passes. In the meantime though, I am scheduled for a sympathetic nerve block on Friday.
Were my pain in the higher level, I’d be looking forward to it. As is, i’m more apprehensive as, as-is, I’m similar to how i was pre-op – afraid of the grass is greener getting me to do something that makes everything brown…And of course I don’t know if i want it to work or not.
Supposedly it is used to help with a CRPS diagnosis. But also supposedly, one can not respond and have it – or respond and not have it..So yay for diagnostic tests..
Anyway, there also of course is the fact that it’s a new year, new deductible, new yearly max – which means I’m easily looking at about a grand for this block – out of pocket..
And that everything I’ve read about its longevity is drastically different than what the person on the phone was saying – though she also said that she just started in November and all of the questions I was trying to ask, she answered more as an ‘this is what I’d do’ as opposed to what I was asking for which was statistical results/medical reasons..
Reading online, the first one doesn’t last very long – though future ones can build on it…the person on the phone was saying oh, no, it lasts for months…(I can’t find anything that backs this up).
So, there’s the question of do you go through all of that for a brief respite?
And, were my nerves flaring, yes.Yes. yes.
And not only yes, but it would have a very clear and drastic demonstration if it worked or not..As is…is it worth it? taking pain from a 4 to a 3?
I gave it more thought though and – i still can’t walk without crutches. So, while I may have far lower levels of NWB pain, I still have extreme challenges with mobility – which could show quite well if the block worked..And, I also feel like..
Well, I have a theory that is 110% unsubstantiated by anything but my thoughts ->
My theory is that people who have surgery with no nerve block -or have issues with the block taking – have a *much* higher chance of developing nerve issues because their nerves never get a chance to calm down. From the moment of surgery, the nerves go up in arms…and the excitement continues to the point that the damage is no longer feeding the nerves, the nerves are simply in a self-perpetuated spiral.
Whereas, if one has a block, by the time the nerves wake, the worst of the trauma is done…So they wake and get upset, but it’s a *drastically* different level of upset as the damage has already been triaged and healing has already begun.
So, to me, throughout this, I kept thinking – if I could just get my nerves to settle – even if i went in for a full 100% block, not a diagnostic, a full shut everything up – if i could do something/anything to get my nerves to just stop for a moment and reset…pause and then review the current situation as it is – not the story created by the self-perpetuated spiral – that I could get this to stop..That it would be okay..
And, if I couldn’t get them to stop…well…then i’m facing some potentially serious trouble.
I was hoping the drugs would silence them, but so far, they have only dampened my nerves’ enthusiasm.
So, even though my pain isn’t at an 8..the fact that it’s also not at a 0 means that I need to do something…Thus I reckon on Friday I’ll be getting a needle stuck in my spine.
Other than that..truly not much has changed..still can’t walk without crutches or a boot…can’t walk the dogs very far…can walk more (e.g. into a store) without the cane (still with the boot though)…my foot isn’t as swollen or color-shifting (the color is usually 95% normal)..and actually hasn’t been since my nerves started to settle..this means my foot no longer has to be elevated nearly as often which is quite a nice change…and i can even sleep with it flat again – which is also lovely..
i’m somewhat contemplative tonight, so i guess i’ll leave it at that.
—
one thing I keep forgetting to mention:
the fibula/calcaneus pressure/pain has pretty much completely subsided. So, it does seem that given time, with the support of the new heel placement and new tendon, the medial tendons/muscles do begin to build enough resistance to counter the lateral’s pull.
So, as much as the rest of this is…kind of…anything but ideal. My foot doesn’t pronate..it doesn’t seem to overly supinate (if it supinates at all – it’s hard to tell as I’ve lived my life with pronation so anything that’s different feels like it’s ‘wrong’)..the fibula/calc pressure/pain have resolved…So, putting the nerve struggles aside – all in all – short-term at least – truly phenomenal surgery results..
hmm –day 112 (week 16)
hmm…
I haven’t written for..well, for me, it’s been a mighty long time.
I still need to write about the pain clinic..and of course everything else. So, I suppose I’ll start with the everything else and …go from there..
My nerves have continued to be on low.
On the one hand, this makes me elated. I’ve been able to make *so much* progress in the last week or two..I’ve made it to the end of the pool while walking – the full 3.5’…I can do a jumpy step in the 4.5′ depth – which requires a ‘bounce’ on the ankle that was previously inconceivable..
I switched to one crutch about two days ago..Some hours I have to return to two, but overall, I am able to do one crutch – with a heel-toe push-off.
It hurts, of course…but seeing as it was previously pretty much impossible, this is huge.
My knees HATE me. Truly. They would file for knee protective services if they could.
My right knee is worse (the PTTD side), but both..not happy.
I think there are two parts to this – one – as I mentioned – I cheat..at times I walk funny around the house instead of walking ‘proper’ with crutches.and that definitely tweaks things..This tweak is further exacerbated by using the boot..I think that my funky walk puts my knees on edge, and then i use the boot and it’s just too much..So, I really have to stick to the crutches – even more so as it seems the more I slack from them, I begin to forget how to walk properly..
So yeah… knee pain..and foot progress..
But..My nerves still hurt. I have yet to have a block in a day with no nerve activity – and I’m certain were I to get rid of the gabapentin, I’d feel it..but it is less than it was..
Conversely…I’ve been through this..I’ve thought the big wooohooo my nerves are calming, things are going great…and then slam..
So right now, I don’t know what to feel..I think this is the longest they’ve been calm(ish) for – but that doesn’t mean they’re done..
I was hoping that they’d diminish…kind of the they started to settle and then progressively decreased in their upset until I never heard from them at all again as they returned to normal..But instead it seems that there’s the flare point and the non-flare point..and neither are normal..and neither are progressive to normal..they both have their baselines and both baselines are..pain..one just has less of it..
But, there’s still time..my foot isn’t going anywhere…so maybe this low will shift into normal given enough time..I have absolutely no idea what to expect.
So perhaps that’s why I haven’t written..I just don’t know what to write.
On the one hand, I’m beyond done with anything to do with my foot – and writing about is just another thing to do with it..and yes, by comparison, i’ve made huge strides – i still can’t walk no crutches heel-toe..but the fact that i can even put down one crutch at points during the day while i do walk heel-toe is huge…making it five+ blocks with the dogs & the boot is also great..and as much as the burning and fizzling and clamping sucks..if this is how it is…people are adaptable and i guess i too shall adapt. but i have no idea what to expect..no idea ‘how it is’..no idea if i should be excited or waiting for the next crash..no idea what i need to accept and adapt to..no idea. at all.
the good –day 106 (15wks 1day)
15 weeks 1 day
That alone is depressing.
I wasn’t depressed really before I saw that, but now…well..I best try to redirect my thoughts back to what I was originally planning on writing because 15weeks…that hits hard..
The good:
*My nerves are still outside of a flare – which isn’t to say they are pain free or ‘normal’…they’re definitely not back to a calm level and still have mini-flares..but the drop does mean that the pain spikes are far fewer, the NWB pain is far less intense, and I’ve been able to make some rapid progress in recovery.
Well, rapid by comparison to the alternate progress.
I’ve been able to walk heel-toe better and better with two crutches. To the point that if things keep up, in a week or two, I could see myself switching to one crutch.
I’ve made it past the 3.65’ mark in the pool – almost to 3.5’, but that’s definitely pushing it, so I turn back right before that..
I’ve been able to walk further with the dogs (with the cane and boot) – both in distance and time spent out. It’s nothing magnificent..perhaps 5 blocks or so. But compared to what it was a few weeks ago, it’s huge.
*I am able to put enough weight on my foot that I can step into the shower without needing to rely on the handle I have attached to the bathtub edge.
*There are brief moments…rare and brief, but there…where I see what others must see with this surgery..were it not for my nerves, it’s really not a bad surgery at all. Truly. So much of my misery has been nerve-related – which I also see as I’m able to differentiate between ‘nerve pain’ versus ‘standard surgery ache/pain’ more and more as time progresses. The latter…really not that bad. I would be far more active, definitely walking the dogs a lot…In general, things would be pretty spiffy right now were it not for the former. The ‘standard’ pain, at this point, I would say is none or next-to-none..very, very rare..and probably would only hit were I to do something like try and walk 1/2mile which…I’m still relegated to 5 blocks with a boot due to my nerves, so that’s not happening..
It also is reasonable pain – it hurts when you’re on your feet for too long – you get off of them, and relief…This alone makes it fully dealable. Or rather, for me, would, if it were all I had to deal with.
*I can do all of my PT exercises outside of the pool – *except* for normal heel-toe walking. But sideways walk..any flatfoot funky walk, I can do (at least for the 20 PT steps..anything longer might get a bit wonky)..
*I can stand in the shower – I think this one is more of a testament to the fact that I’m utterly sick of sitting and my other foot/leg have increased their tolerance of holding most all of my weight as I’m really putting no more weight on my bad foot than I was pre-op at which point it was easier to sit…but, feeling comfortable standing again is nice.
*I’m able to tolerate more and more weight on my foot in general.
I cheat.
I know I’m supposed to do heel toe and not walk if I can’t walk proper..and I’m supposed to avoid the boot for my nerves. But I get up in the morning and I don’t want to always reach for the crutches…some times I go in the kitchen and want to carry something..and so on..
Previously, this meant that I did a very funky twisty walk that was shifting the weight off my leg/foot as I walked..Now, it’s still a funky walk, but over half of that is just due to the heel-toe part, not the basic weight bearing issues.
And…the bad…well..as it seems that most of it is actually not really related to standard PTTD operation results, I shall put that in a separate post instead of starting a separate pain blog as I’m attempting to parse out ‘progress reports’ for those who only want the directly PTTD related info.
That said, I will first add that I am very torn. My foot is behaving more and more. As above, I’m suddenly able to make progress again. It still hurts..still mini nerve flares..still a lot of not fun. But by comparison, a world of difference..
I’ve been out of a flare now for about 10days and..to be able to already make it almost to the end of the pool, walk multiple blocks with the dogs, see the switch to one crutch in my near future…It’s all so hopeful and wonderful and feels happy and inspiring and like I’m almost out of this..it is going to be okay after all..in fact, it’s going to be great as I’m going to be able to get on with my life.
But so far, based on the albeit brief history, I fear another flare..
Or rather, not the flare itself, but…if I get happy now..if I let myself think positive and look for the future and moving on – the same as I did about a month ago…if it flares again..it will crush me..so instead I’m almost oddly pushing myself to be pessimistic…but each day that passes, I naturally get a bit more and more hopeful…Particularly as the history is brief – maybe this time I am getting out of it..maybe it’s done flaring…and things are starting to go so well..
But with each day that hope grows, I have that much further to fall if the flare hits..
bitter – day 104
I have a lot to write…a lot of catching up to do.
I went to the pain clinic yesterday which took a while to digest (still in progress, i guess)…a big one I shall undoubtedly rant on is again opiates…The md there was blatantly anti-opiate from the second he opened his mouth..And it drives me nuts – black and white for or against – telling me i should blindly take them every day, several times a day, or blindly that they are evil and must be stopped…Not keen on either..
And very not excited when I say ok – I don’t need them if i have something that works. but, what if i switch to x drug and have breakthrough pain – what do i do?
The response – an NSAID gel or acetaminophen..
But NSAIDS and acetaminophen don’t do jack for me – if it’s at the point of taking something, i Need something..otherwise, i don’t take anything and just deal…
Well…the NSAID gel..
And here, you should take this SNRI that causes known physical dependency and is known to be atrocious to get off of…and is new so we have no idea long-term effects of it, but hey, right now, society says it’s good therefore it is…and opiates are evil.
yeah.
anyway, don’t want to spoil my whole rant! It wasn’t all bad…like i said, it was a lot to digest..i just didn’t get any version of comfort from the md there..and in reality, kind of was about to break down and cry over the whole thing as i left..but…pulled myself together and..carrying on..not much of a choice i suppose.
On the plus side, my nerves have continued being in an un-flared state which means I feel like I’m finally beginning to make some progress…Unfortunately, despite being out of a main flare, it seems i still have mini-flares such as today where i got out of nowhere attacked with pain..and though i don’t like it or want to admit it, it was going about 1/2 way up my leg – pushing the line of ‘anywhere below this line is subject to being hit’ to mid-calf (two weeks ago, it was pushed above my ankle..before that, it was around the ankle with just the little blip up high on my leg that has rare little shots here or there)..
i missed a dose of gabapentin yesterday due to my appointment. so, i’m hoping it was just from that and will be better tomorrow? in the meantime..not fun..and in the meantime so very close to taking an opiate today 🙂
and …for posterity’s sake, on the subject of pain..it sounds bonkers, i know. completely nutty. but, it has happened several times now in the last two weeks or so, so i guess i should mention it. There are times when i get dagger pain in my left foot – the ‘i swear i could tell you exactly where they cut the bone’ feeling – but it’s in the wrong foot..as well as other daggers…
as mentioned, i’ve had long term issues with that foot – but they’re not dagger issues…the dislocated toe – even with metatarsalgia or morton’s neuroma and the pulling of the third toe into a claw…and of course arthritis and all those associated pains…even the pains along the PTT..but most all of those are mid/forefoot pains and i know the pains…they are familiar..
i could be forgetting and i used to have these pains before at some point for some reason and i’m going with that for now, but if i were to let go of that thought then a giant wtf because i’m magically having hellish pains in the same spots in the wrong foot?
anyway, sounds crazy, like i said. but, also like i said long ago, i’m not writing this to sound like an angel.
on the subject, i did ask the md in passing if it was possible for the brain/spine to get confused and send the signal down the path for the other side (thinking perhaps the paths were *right* next to each other)..he said it would be very difficult – they do have one point where they will cross, but it is not an easy fluke..nonetheless, maybe my body is just a bit disoriented?..
ANYWAY
the point of the post – bitter
I saw an update to a PTTD post on Healthboards (http://www.healthboards.com/boards/showthread.php?p=4904583#post4904583) from someone who had surgery and they updated after two weeks of how lovely they’re doing..and again, like the above, i don’t want to write this acknowledge this, any of it..but my first response was utter bitterness – a “well la dee da fucking good for you”
Wow.
Wow.
What is up with that, I do not know. I might not always be milk and cookies shmoopy oooo i love everyone and i’m sooooo happy for you and everyone and that’s GREAT news!!!!!!!!!!! 🙂 🙂 🙂
but i’m not/or rather never was …that nasty..seriously..my response…two months ago, i could see my mental response of huh..well, i guess that’s good to know that it does work for others..and hey, i can use it as hope that i’m just behind, but it’ll be good.. now though..pure automatic bile.
so yeah, like i said, a lot to say about the clinic meeting.but as one part of their multi-faceted program is dealing with pain issues with a psychologist, i definitely could use that because this whole thing is bad enough without me turning into a pile of ugly bitterness.
new year – day 101
Well, it is officially 2012. A new year.
Last year seemed to be the year of the foot. From the end of January on, there was something to do with my foot – my trying to take time off and follow RICE..it continuing to have issues…my having issues staying inactive and saying ‘screw it’ and carrying on despite the pain…the pain getting worse and worse…doctor appointments..and of course the last 4+months that have all been documented here.
So what does 2012 bring?
Well, despite the fact that it is merely a fictitious demarcation and is no different than deciding that as of June 27th @ 3:19pm, the following year would be different, I’ll play along with protocol and view it as a divisor…
2011 was the year of the foot…so, I dearly hope that 2012 becomes the year of full recovery and moving on.
I’m starting the year at the pain clinic (on the 3rd), so I’m off to a good start…I guess. I’d rather I were already be walking and increasing my distance/endurance etc etc. But, things being what they are, I will be able to start finding out what’s going on and what I can do about it…In other words, I’ll have a starting point to begin moving on; as opposed to now – where I’m kind of stuck in a vacuum.
As for the vacuum of now..My nerves do seem to be continuing their improvement of about a week ago – which is not to say that they are getting better and better – but that the original reduction in severity has continued. So, anything that went from a 7 to a 6 a week ago, continues at a 6 – but it’s not a 7, so despite the fact that I still feel plateaued in recovery, I am at least a step better in some respects.
The last few days, I’ve been walking the dogs twice a day for about 2 blocks with a boot and cane. I have the tendency while out that if it is not excruciating, I will keep going until it is. Which, is not always the best plan as it never becomes unbearable when I hit the front door – it does so when I’m still a block away as, brilliant me repeatedly thinks – hey, it doesn’t REALLLLy hurt after this block, let’s try another one.
So, yesterday I came home after 2 solid blocks feeling like there were 100 razors cutting deeply into my heel with each step. (Oddly, the largest burst of pain was when my heel would raise – not when it was bearing full weight). It didn’t feel like daggers or a knife – they are far too thick of an object with too little of a blade surface space..
But, I made it home..
And today, we did the gimpy walks again…again quite painful, but not to the point of razors – despite going around the same distance. So, perhaps that’s something?
I question giving up the scooter as it is quite expensive to keep, but I don’t know if or when I’ll be able to expand my distance and the dogs surely need more than two blocks. So for now, it remains…
It also seems that perhaps I have made some progress with the walking heel-toe-push-off with no boot and two crutches? I *think* I’m putting a bit more weight my foot while doing so than I was say two weeks ago..The pain is still intense – but, as mentioned, a little piece of the pain has shifted from sharp and shrill to a more tolerable feeling of arthritic stiffness/clenching/immobility..The latter of course isn’t where I’d like my foot to shift to long term, but as it’s a far more familiar feeling and is less all-encompassing-intense, for now it’s a change for the better.
Anyway, I’m not sure if I can do more weight than say a week ago, or simply am more okay with the amount of weight I have used since I first got out of the boot. Either way, it does seem that if I am making progress, unless something else helps along the way, it will be a good 1.5 months before I’m able to switch to one crutch..Better than never, I suppose.
Meanwhile, walking in the pool…Some days I get to perhaps 3.65’ others, I can’t get past 3.9’…but all days end the same – feeling pretty much stuck despite the fact that I’ve been in the pool for what now feels like forever.
The latter drags on me a bit as I’m used to pain..(or at least cause and effect reasonable levels of it, not cause and I’MGOINGTORESPONDLIKEYOUSTABBEDMEOVERANDOVERANDPOURED-SALTINITANDSETMEONFIREEVERYDAY pain) and as I’ve undoubtedly said, I push through it, ignore it, carry on despite it, breathe past it, accept it…I don’t let it stop me. But this…My usual methods of dealing, my usual defense, I get dragged down because none of what I know, none of how I have handled things successfully for my entire life, works.
In the pool, I hit 3.65’ and reach points where I say I DON’T CARE!! I’M GOING TO GO FURTHER! I DON’T CARE HOWMUCH IT HURTS!!! And I take that step and start to do the push-off and my knee collapses in agony. It’s not weakness…it has nothing to do with my significant lack of calf strength..it is 110% pure pain.
And then, not only am I left with trying to keep ‘walking what I can’…accepting limitations – and still walking instead of getting out of the pool because holy crap this is pointless…I’m left trying to keep my head up…trying push on mentally that yes, it has been..?6 weeks in the pool and yes, I really haven’t made …really any progress..at all…and yes, my normal mechanisms to get through such a situation are utterly useless…but I’m going to keep going…
It’s hard.
I don’t bother trying to cheerleader myself..I don’t get into that with myself as at this point, I could counter-point any cheerleading quite easily..Instead..it’s not up for discussion… And, sometimes, it’s hard.
So, yeah, 2012…maybe the new numbers on my checks and doctor forms and blog posts will offer a change of direction. Even if it takes longer than planned, if it happens, that’s good enough for me.
yay –day 97
Amazingly enough, my foot wasn’t upset yesterday from the usage of the day before. My knee on the other hand was far from excited – which clearly indicated that my odd walk in the boot is a bit too odd to attempt on any regular basis.
In addition to not being upset about the day before, my foot actually felt like my nerves were beginning to settle a bit yesterday. It still hurt of course, and my nerves had their bites and jabs, it was just less severe…it felt like it was in more of a recovery state as opposed to a stasis pain state. It felt how i’m thinking it should have felt about a month ago.
So, later than ideal, but if it’s happening at all, I’m happy.
And today..again…my foot is feeling better. It definitely hurts, but…as best an example as I can give – when I try to walk a heel-toe push-off, for the last month, it would immediately hit a knee-buckling level 8 of pain. Today, it’s more of a 6-7 of pain plus a 1 of just standard arthritic style stiffness/lack of use…The latter of which – I can fully deal with..And even though 7+1 still = 8, the fact that even a little of the pain has shifted from the intolerable back to ‘normal’ pain (and for what it’s worth, pain I’d expect), gives me hope.
I then took the dogs for a walk with no opiates, the boot, and a cane.
We walked a block..
They of course found it beyond boring as I walked the speed of a snail and then poof, I declared the walk done when they had just begun, but – progress. And, progress I couldn’t even make two days ago..again pointing to my nerve flares intercepting my recovery process.
By the end of a block, my foot was beyond done. Pain upon pain..But that was the first time in …97 days.. that I’ve walked a block on land with just the boot and a cane.
I could undoubtedly look at that with dismay – that I’m this far along and only able to walk a block. But, the alternate reality I’ve been living keeps it in a different perspective – I made it a block..I’m getting somewhere.
Given that my nerves seem to be settling a little bit, I feel a bit stupid for going to the pain clinic as I feel like I don’t need to see them, I’m just behind in recovery, but will recover just fine…Unfortunately, I’ve been through this cycle before and the past cycles have ended me up with a flare and all recovery stopping..So, if nothing else, I need to see them as a just in case – such that should a flare re-occur, I’ll already be ‘in’.
I do wonder though – if I go in there and things are ‘better’, can they properly help/diagnose me?
Who knows. If nothing else, my nerves might not be at the peak of a flare, but they are still far from quiet, so perhaps they can help with that…
And in the meantime, a block is something..
—-
for reference:
My pink splotch on the face of my foot seems to be completely gone.
About 1.5 weeks ago, I had a purple-ish splotch show up along a line of my PTT that has been hurting a lot lately. It is partially purple and partially little capillary lines. Yesterday, I was looking at my foot and it had spread all from the base of the tibia along the PTT path and then along the medial part of my foot, up to the base of my big toe.
Today, it’s pretty much gone.
So, not sure if it’s related, but it seems that I quite possibly am losing one color splotch only to have it replaced by another..
day 95
95 days…That just sounds like a long time…Which actually goes pretty well with what I was going to write before I even realized it was day 95..
I tried to take the dogs for an actual walk. I thought I’d walk a block with the boot and no crutches.
I made it 3 houses.
On my way back from our super long walk, I saw a neighbor that I haven’t seen in a while..We mostly talked about feeding the birds and squirrels in the winter and the different birds that stick around for the winter. He did however say a few things in between our conversations about this (my foot) taking way too long…
Later, I took the dogs for a proper ‘walk’ which meant I used the scooter.
Which lead to one of those ‘you know it’s bad when…’ scenarios. In this case, it was: when a complete stranger who lives 4+ blocks away and you’ve never said a word to says “Are you ever getting out of that cast?” (referring to the boot)
Time flies quickly when something happens to someone else. Thus, the usual recognition would be more along the lines of ‘wow, I didn’t realize it had been that long’. So when, to a stranger, it is clearly a long time…Something’s up.
I paused in response as – a. I was a bit stoned since I had taken 2 dilaudids (more on that below) and b. 100% sober, I still didn’t know how to respond as I have that same question..and I don’t know the answer other than what I eventually replied – ‘I sure hope so!’
‘Can’t they fix it?’
‘Well, i had surgery…’ (Not mentioning that this was what got me in the boot in the first place).
‘ohhh’
So, yeah..No idea who this person is..I’ve wheeled past his house a fair amount in the last few months, but …that’s it..It’s possible we’ve said hello once or twice before in passing, or even a comment on that the dogs should be pulling me as has been exchanged with several neighbors, but that’s it..So, the fact that he knows that this has been a long time..kind of points out that indeed it has.
As for the dilaudid..As mentioned, I’m focused on getting on with life – and using opiates as a tool to do so as I simply cannot without them.
I took a dilaudid yesterday evening simply for the pain. Today, I wanted to try and get something done & do so either with no boot, or no crutches – and after starting the day with my 3house dog walk, my foot was beyond done. So, I took a dilaudid then..
But, within about an hour, I needed another in order to continue on. (And I do believe that given my activity of today, tomorrow morning, I will be hurting).
I hate to think that it is more painful than it used to be, but i guess, if I do think about it..it blatantly is..
At first I thought perhaps it was just tolerance, but I then realized I can gauge my pain not just by the opiate dose, but also by how much I avoid movement when I am trying not to take an opiate..
With two crutches & the boot…one crutch & the boot..by the end of two weeks with those scenarios, I could get some stuff done without needing an opiate..not a lot, but some..and the time that I didn’t take an opiate..there still was some basic activity on my part. Whereas now, no opiate = avoiding mobility..So I suppose that it’s not just a tolerance thing. With no crutches or no boot, the pain clearly is a chunk higher; there is a clear difference in my simple ability to..function on a basic level.
I’ve also noticed that a lot of my pain does indeed seem to be nerve related..Though there seems to be a variety of ways the nerve pain feels for me, I have been having an easier time of late identifying ones as such…
I previously assumed things such as – I’m standing on my foot, my heel hurts – therefore, it is surgery pain..
I’ve come to realize though – often that pain is not the standard pain, it is the sharp, filamenty pain – which is nerve related..
How my nerve pain could be worse when I use the foot I don’t know or understand as I would have figured that it would be usage independent..but…some of these pains that occur during usage are pretty clearly from my nerves.
So – as much as I’m not excited that using my foot makes them activate, it actually is somewhat hopeful to me – since, if this pain is my nerves, it is quite possible that once i get my nerves to finally settle, i just might find that overall, my foot itself is plenty fine…it has a few aches/pains here or there, but nothing of consequence.
In other words, it may very well be that once I get the nerves situated, I might be tromping around the hills without issue again..
I dearly hope so…
unsettling –day92
I’ve been very, surprisingly….calm overall about the nerve issues post-op. Assisting in that has been the fact that they do start to settle – or at least they did. They would flare again which…wasn’t exciting, but then they’d start to settle again…
So, despite my surgeon bringing up RSD at both of my last appointments, I have somehow retained a calm detachment from it. It is quite possibly, simply nerves that need to fully settle and that will be that.
I do however have a few occurrences that are starting to bite a bit at my resolute zen.
1. I never mentioned this to him, but…the hair on my foot and leg were crazy long…I’ve not shaved before and the terminal length of hair on my leg is about 1/2″ max. This was at least an inch…
Additionally, the hair on my toe and foot – long, dark……
I wrote off the leg hair to my leg being in a cast..perhaps hair grows differently in one..
And the hair on my foot to the fact that the face of my foot was shaved for the fusion – whereas my other foot wasn’t..so maybe it’s that thing where shaved hair comes back coarse and long? (I’ve yet to find out if this is true or not, I’ve heard both throughout my life).
The hair on my toe…well..that’s tough..but my other toe has a tattoo, so maybee i just can’t see the hair clearly for a comparison.
Okay.
2. Sweating.
I mentioned a little while ago that my foot had begun to sweat.
It hasn’t stopped.
This is the more disconcerting one as I haven’t been able to find a wayo explain it away…it isn’t always hot and sweaty…sometimes it’s cool/outright cold and damp…
I’ve thought that maybe I just only notice it now on that foot, but…there are points where I’ve touched them with my hands to verify what my feet are saying and…one foot is pretty much dry and the other..isn’t.
I also can slide my toes against each other – on one foot, they slide easy and it makes that farty sound kids make by sticking their hand in their armpit..the other toes…don’t really slide against each other as they’re pretty dry, and..no sound..no chance for it as again, not really sliding..
Somewhat unrelated but just weird is that I’ve been having a lot of ‘old’ damage show up. Such as – I wrote way back – I wore the brace – and if I pulled it any tighter, it cut hard into my sural nerve – that exact spot, that exact feeling, it now comes back to haunt me. And it’s not the only thing i did in the past and thought nothing of that now…it’s like photographic cell memory or something. Weird.
Anyway, I figured I’d throw this stuff out there for posterity’s sake…later on, I can look back and know what happened when…or later, someone else can read that I too had sweaty feet, etc and turned out just fine..
In the meantime though, the sweaty foot is getting a bit distracting to my calm.
pttd surgery 