It broke my heart to read a recent post where someone said "There were a few people that I tracked when I was trying to decide if I should take this leap of faith and start working with Dr. B - I was looking forward to 'chatting' with them, and now - POOF - they're gone and it's been awfully quiet." I was one of the ones who "poofed" away early last year, when after finally getting to a good point after 16 mo's in treatment (I'd suffered with IC for 10 years prior but it became extreme in 2008), a freak injury quickly snowballed into a yearlong nightmare, as I’ll explain below.  Recently coming back onto ICAMA, I've been saddened to see the marked decrease in participation, and I've been wanting to post but waiting to improve a bit more so I could offer more hope.... reading this patient's post, now seems like the right time to explain and share my story.

So as I said, by early 2010, my bladder had finally healed significantly.  Then, during my exercise routine I did some squats with weights, and I felt a little sharp pain in my left knee.  Since nothing showed on later tests, it was likely a minor strain/stress fracture (perhaps from incorrect positioning / too much weight / not doing squats regularly / previous high-incline walking).  So I lay low with my exercising for a while.  A couple times I think it may have been close to healing, but my carrying heavy groceries up the stairs -- although a usual occurrence -- may have re-exacerbated things?  Soon, even walking seemed to inflame it and cause a weird discomfort like my kneecap was rubbing against my femur.  Then, I started getting arthritic-like symptoms in my knee, and found it harder to do stairs or sit normally with my leg bent, all of which was so bizarre.  (I think my living in a three-story place with so many stairs partly exacerbated everything.)  And before long, the other knee unbelievably developed the same symptoms (maybe partly from compensation, esp on the stairs).

During this time I stayed with Matia, who was working on treating my legs.  She said that while she'd never seen anything exactly like this, in that it snowballed so quickly, she thought it was IC-related and would just be a short-term issue.  But I also sought out several Western doctors and had many tests because I was doubtful of Matia’s helping me since I kept getting worse.  The first orthopedist was a joke (I should've listened to my gut then to get a second opinion).  He prescribed physical therapy and because I felt strongly there was a structural component, I started PT (against Matia's judgment, as she advised almost complete rest).  While a few times I seemed to feel better afterwards, it messed me up more in the end, so I stopped. 

Then bad went to worse.  Within a month it spread throughout my legs, to all the muscles and joints, with indescribable, constant pain and weakness.  First I had to stop driving, then working, then almost everything else.  My legs developed the worst throbbing pain, and deep to the bone aching, and burning as if they’d been set on fire, and super-sensitivity that made any position uncomfortable.  They also kept getting weaker and weaker.  My knees felt like twigs and my legs would shake if I stood.  It felt like they'd give out any moment.  I also became unable to lift even the lightest objects or pull out a chair or other everyday necessities, because we don’t realize we use our knees/legs even to a small degree with these things.  It got to the point where I could barely stand.  And sitting was impossible, too painful.  Lying in any position caused intolerable discomfort.  So I was pretty much left with lying flat on my back.  In a matter of weeks I'd gone from limping to walking with a cane to not even being able to sit in a wheelchair or leave my home.  Almost totally incapacitated, I could not do anything for myself.  I could barely stand long enough to shower or take my pills.  After a few months, I had to move in with my parents in another city where I could have more full-time care.  I shot down to a frightening 99 pounds (I don’t think I even weighed that much in high school!).  And I was so immobile that I started getting bedsores.... yes, bedsores!  My young and formerly active self was suddenly trapped in the body of an elderly person. 

At that point, the whole thing was so beyond frightening and perplexing, I was totally confused and scared out of my mind.  How on earth could a tiny injury become so incredibly extreme, and so quickly?  Why had it spread throughout my legs?  Who do I listen to -- the Western docs or Matia?  How much longer would my legs be like this... or was it now a permanent condition? Matia believed strongly that it was a case of my IC (=systemic inflammation) moving to my legs (=new weak point).  She reassured me that she'd seen all sorts of extreme and weird situations happen to the IC body, that the IC body can have an exaggerated response to all sorts of things including injuries, and she was still fully confident I would get better.    (In my research I also found a rare version of fibro called localized fibro that can start after an assault to the body like an injury and it fit my symptoms (I didn't fit the regular fibro symptoms), but Matia didn't think so and didn't want to put any label on it.)   While I trusted Matia and the holistic approach, and she'd certainly healed my bladder, I had major concerns because I was only getting worse under her care and it had now been months like this.  I couldn't be out of work, out of my home, interminably.  So I sought out further Western doctors.  They didn't really have any explanations but they were alarmed by my degree of incapacitation and weight loss and suggested I get on meds.  But their suggestions (i.e. anti-inflammatories, pain meds, protein shakes for my weight and physical therapy) were all no-no's with Matia's treatment (and things she said would truly make me much worse).  The final internist believed it was a fibro-like situation and biochemical, and that a certain class of antidepressants would truly help my legs and give me much-needed psychological and pain relief, but I wasn't ready to go there yet.  Many of the doctors also expressed disdain, with comments like "It could be the herbs -- you don't know what's in those things."

Though I was exhausted and hopeless after months of fruitless researching, because I still felt strongly the issue could be structural, I renewed my researching.  I ended up coming upon an orthopedic condition, patellafemoral syndrome, that except for the severity fit my symptoms, some of which were very unique.  I realized then that it could be both structural and IC, that maybe the injury set off a structural condition which then set off my IC inflammation.  I'm glad I pursued this line of thinking and kept my scope wide instead of blinding following Matia or any provider, because only we know our bodies best and should honor what our gut tells us.  So I sought out a new orthopedist who concurred and  said I'd recover just fine but it would take a few months, and I needed to get my legs moving ASAP and start the proper physical therapy for PFS.  "Complete recovery?!"  "Only a few more months?!"  I was so happy and relieved.  Finally, some hope.  Finally, a diagnosis and treatment plan and timetable.   (Yes, I felt conflicted, as Matia had been recommending almost complete rest and no PT, though once I told her the diagnosis she said it certainly sounds like it could make sense and I could proceed cautiously, but was still concerned about it inciting the inflammation.)  My excitement, however, was short-lived.  Long story short, while the first few weeks of physical therapy I had small improvements, the minute they put ankle weights on me for my exercises, that apparently reincited the inflammation and I got worse all over again.  I thought it was temporary, esp as the ankle weights were sooo minimal.  But as days turned to weeks, my daily Level 1 exercises remained harder to do and I couldn't progress at all, which was a complete conundrum to the physical therapists and me.  (However, I did continue the PT, as I have to this day, because the bone-on-bone grating resolved and stayed that way -- whether that's from the PT or just from starting to move again, I don't know.)   

By that point, I was deflated.  I had already suffered through plenty of depression and fear up until then, but now I sunk into an even deeper darkness.  It felt unending, inescapable.  Even though Matia kept saying she was certain I'd come out of this just fine, it seemed too improbable, especially as I was only getting worse and as she'd admittedly never treated my situation before and was a bladder not legs specialist, I thought she was just being optimistic to keep me going.  I didn't know how much longer I could live like that, and fantasized about suicide often (though I couldn't bring myself to plan or do it, maybe more out of fear I wouldn't succeed and end up in a worse state!).  I was worn down by months of chronic and extreme pain (and I thought my IC had been bad!).  I was wrestling with intense fear because of the incredible uncertainty.  I was having major marital stress, dealing with a husband who threw his anger on me, as he couldn't handle the stress of it all... me not getting any better or having a timeline, "throwing money down the drain" with so many pills and she had me taking them 5x/day!, going through a probiotics bottle every three days at one point!   I couldn't handle the financial pressure of all the bills piling up.  I started getting unbearable anxiety attacks.  Not to mention I was going crazy mentally from losing my entire life really, and my independence.  I couldn't work, but I struggled with not being productive.  I needed the mental stimulation yet I wasn't able to do much.   I could barely do anything for myself, and I hated that I was so dependent and such a burden on everyone else.  I couldn't get out, let alone do anything out, because I could hardly stand, and I couldn't be in a wheelchair because I couldn't sit.   I could barely handle reading or even watching tv; it's like my brain was fried (which, I've since learned, is basically what happens as your brain chemistry changes when you endure chronic pain long enough).  I had no desire for food.  I was desperately lonely but at the same time couldn't handle talking to anyone!   I was so sensitive to people's energy.  I was living in a city away from my husband, my home, my dog, my friends, my family, my therapist.   I was losing my mind and just couldn't cope anymore.... It felt like all possible ways to challenge me to my limits were thrown at me at once, and I just had no fight left in me. 

So after a torturous month going up and back on whether to take meds, I finally decided to start Elavil (for pain & depression/anxiety, usually Matia's first drug choice).  Even though it was a beyond-low dose, half of the smallest pill they make, the side effects were really rough but finally abated after a month.  They also worsened my bladder very briefly, then Matia got it under control.  But at that point the benefits outweighed the risks.  Even though my experience was still hell, the meds made it a more bearable hell.  I was definitely better able to cope.  They also helped me regain some appetite, sleep and mental clarity, which was huge.  (That internist who had thought my issue was biochemical and had wanted me to get on a drug like this was happy with my response and wanted me to continue going up on them, as he believed it would 'cure' my legs.  But I stayed at the lowest dose per Matia's strong advice that any more would be problematic and even if I improved symptomatically, it would drive the inflammation/imbalance deeper into my system to later come out in another way, as she discusses in her dissertation.)  I started having tiny improvements around that time, though Matia said the meds just don't work that quickly, but oftentimes in extreme circumstances the meds' psychological effects can actually allow her treatment to work better.  Looking back on those months now, though, I can see there were some gains (and even before the meds I was responsive to her treatment).  It's just they were just so tiny (given how very bad off I was) that they didn't have much merit to me, plus after the meds I wasn't sure how much to attribute to them.

Finally, toward the end of last year, I started experiencing more (and more sustained) improvements and the pain intensity and duration gradually lessened.  Progressing in what felt like inches (just how it had been with the bladder!), I slowly was able to stand and sit more, then work a little, then work more, then drive recently.  Today, I am back to a fairly functional existence.  That said, this is not a complete success story -- yet.  There is still much more work to be done on my legs.  They are still weak, I still have mild discomfort, and I'm still limited in what they can handle, i.e. I still can't progress in PT, I can't kneel or squat down or run even a few steps, let alone do any activities I used to do like yoga or bike riding.  I'm also a little nervous about what will happen when I start tapering off the meds hopefully soon.  And my progress still has ups and downs or plateaus.  (Matia says eventually it will "catch," just like it did for the bladder, where it stops wavering and reaches a strong point.)  But the most important thing is that, even though it's still so slow, I keep moving forward, and Matia has gotten me back to living more like a functional human being now and out of major pain.  What's also amazing is how well overall my bladder stayed strong through some intense herbs for the legs.  Sometimes it did & does act up, but Matia's been pretty good about managing it all.  Even though I certainly want a full recovery, if I only got to this point, that alone is huge.  Where would I be without Matia?   No other doctors had much of anything for me, and I truly believe in my heart I'd be worse off if I'd followed their advice.

I'm sorry all this history took so long, but with a year's worth of travails it was hard to condense.  The real reason I'm writing is to share some of the biggest lessons I learned through this experience in the hopes it might be helpful to others.  I hope it doesn't come off as preachy... that's far from my intent... I just want as much good as possible to come out of the suffering and to help others struggling as I've struggled.

>>  You CAN heal.  I esp wanted to share the details of my story because a millions times during this ordeal (and I admit even today, now and then) I doubted Matia.  It seemed like treatment wasn't working, and in many cases seemingly making things worse or causing new problems (something you'll hear often in others' stories), but a small voice inside me always believed she was the right course for me.  As many of you are facing much less extreme circumstances (though no less difficult or painful), it should be a huge example of how if I could heal, you can too.  Although many patients progress fairly quickly and without major upset, for others of us, progress can swing back and forth or plateau, and things can get worse before they get better, whether it's your actual condition or die-off effects or both.  In the moment, too, things can seem like they're not progressing, but once you get further along you can better see there actually were improvements back then, however small.  It's so bizarre that it doesn't make intuitive sense, as holistic and Chinese medicine operate so differently from what we're used to, and because you can't wrap your mind around it, it makes you feel more out of control, which stirs up more anxiety.  And aside from the illness, the demands of this treatment can bring up whole new wells of fear and anger and sadness and grieving and doubt.  But none of this means you won't heal in the end.  As I told a soon-to-be-patient recently, you don't have to believe it will happen for you.  I know some posters on here have said, "You really must believe you will get better."  Listen, there's much to be said about optimism and hope... they're helpful tools, even likely to promote/quicken healing.  But when facing intense-enough suffering, especially for the many of us with chronic illness who have a susceptibility toward fearfulness/anxiety/depression, it just may not be realistic.  If you've got that strong optimistic spirit in ya, more power to you, but if not, I say, Just believe it's possible.  Because it is.  Despite your fears and doubts (which are only stories anyway, not the truth), the evidence bears out that most patients recover in time, believers and doubters alike.  And Matia is a genius, no doubt about it.

>>  Vulnerability.  I want to touch on the vulnerability component, because in my story (and many others'), there's a common theme of IC/other physical ailments striking during/after a very stressful period.  For me, I was under tremendous stress at the time, one of the most profound stresses of my life, actually.  With having chronic illness, our bodies are more vulnerable to begin with, and then when we subject them to considerable stress, we become weakened even more or sometimes break down.   That doesn't mean we caused our illness, but it does provide a partial understanding of how things can happen as well as help us consider changing our circumstances/reactions so we can avoid or minimize future problems. 

>>  Give yourself a break.  Unfortunately, I bullied myself about how I handled this illness because in the prior few years I'd done so much spiritual work and had so much personal growth, how could I become so "weak"?  How could I get so fearful?  How could I succumb so quickly to depression?  So for months I was fighting down most of my feelings, telling myself I have to be "strong" and live my spiritual understandings.  Thankfully, with the help of my skilled therapist (I broke down and started doing call-ins with her a few months in), I began seeing how in my attempt to "be spiritual" I was actually being anything but, because I wasn't being real.  Trying to be superhuman by suppressing your emotions isn't admirable, it's fraudulent, and frankly, unhealthy.  It's no wonder I often felt like I was going to explode.  I had a lightbulb moment when I said to the therapist, "I'm so angry I just want to scream!" and she replied, "Well then, why don't you?"  So my advice?  Scream.  Cry.  Grieve.  Beat pillows or anything that isn't alive or too expensive.  It may not heal you but it will help you, clearing that pent-up energy that I learned the hard way needs to be released.   I also worked on seeing how much if not all of my response was just a normal, human response to extreme pain and stress.  This one's still a toughie for me, though.  I'm the world's worst -- I've been told I'm like the horse and the jockey, always whipping myself while running like mad.  But for goodness sakes, we need to be kinder to ourselves, and more realistic.  Who wouldn't feel terrified, angry, devastated, abandoned or hopeless when sufferings of these magnitudes strike?  Maybe a saint.  Then again (and I'm not religious, it's just a historical example), even Jesus on the cross purportedly asked God "Why hast thou forsaken me?"   When I asked a wise spiritual teacher of mine what courage is, he told me that just bearing it and not giving up is 99% of it.  I still don't know if I believe him entirely.  But darn it, I'm trying.

>>  Anticipatory anxiety.  I see more and more how my anticipatory anxiety is useless.  Oftentimes, what I'm afraid of never happens, and  other things I never anticipated occur.  And if what I'm afraid of does happen, I completely underestimate or can't envision how I'll cope or what will come out of it in the end.  I also see how in hard times I immediately go to the worst-case scenario, convinced it will happen or vigorously steeling myself for it.  But because it's all just stories I'm making up, and I absolutely do not know the future (i.e. what if a blimp lands on me tomorrow? or they find a cure tomorrow?), all that energy is wasted and destructive.   So that's where taking it day by day, as much as you can, is a smart move.  I'd always heard that refrain but never got what it means for real until this:  to wake up in the morning and as best you can focus just on getting through this one day and pretending like there's no tomorrow/future, it's only about getting through today.  It's not denying your future fears but kind of like putting them in a box on a high shelf where they're still there but you're not staring at them or going through the box's contents).  You don't have to like how today is at all, but just try to accept that it's like this for today and let go into it rather than fighting to control what you can't control anyway.  It's hard as hell but when I can occasionally do it for real, or even 50%, life is less overwhelming.

>>  Relationships.  It's been said many times and it's true.  You find out who your true friends are -- or in many cases, aren't -- in times of trouble.  Considering that I've always been a big giver, I was shocked that so few people really helped me when push came to shove.  Lots of people said things like "Anything I can do to help!" but it was mostly lip service.  One friend for whom I'd cooked two weeks' worth of meals when her baby was born, said she could only bring me a salad if she could get it pre-bought.  (I was like, "Really? You can't even throw a bag of organic lettuce in a tupperware and chop up some tomatoes or carrots for all of five minutes, just one time?")  She never did bring me a salad, or call again for months for that matter.  It's so easy to focus on or get consumed by the hurts of those who disappoint us... the betrayal, the sadness, the seeming unfairness of it all, i.e. "I did so much for them, I was there for them, how could they drop me in my greatest time of need?"  It's hard to let go of that.  But I realized that at a certain point, after processing the natural anger and hurt, the lingering resentment was eating me up, while my friends happily, ignorantly carried on their lives.  I was forgetting one of my favorite quotes, by Nelson Mandela, that resentment is like drinking poison and thinking it will kill your enemies.  Also, I saw that I was lucky in a way.  I saw their true colors.  I want friends who are true friends, and better for me to find out sooner than later.  Further, I realized that I didn't really know what their reasons were, that I was making assumptions.  Maybe for some, my illness scared them, or reminded them of their own infallibility/mortality .... Or my illness and level of pain and lack of answers made them uncomfortable, and they didn't know what to say or how to be helpful.  (I had to open my heart to the fact that talking to someone who's depressed can be difficult as it is; talking to someone who's suffering tremendously and a little cuckoo is hard for even a mental health professional.) ... Or they were so overwhelmed with their own lives they really couldn't do much for me.  (I admit, this was hard to swallow, esp for those who had two nannies and a housekeeper, but you know, maybe given the life they'd lived, their level of overwhelmed was different than my level.)   I also saw how I had ignored or dismissed the ways people did attempt to reach out or care, judging it only through my filter of what is a proper friendship.  Moreover, perhaps there were past times when I could have been a better friend to them, things that I was blind to.  My resentment had become pretty self-righteous.  Although I didn't set out to orchestrate it, it made me feel more worthy (with their lousy behavior coming at a time I felt so powerless and worthless), as in 'At least I'm a much better person than they,' which is more evidence of my lack of self worth than their lack of friendship.  Though I admit my resentment can still get triggered now and then, what helped me shift my attitude was going to gratitude, turning my focus to the few who truly were there for me.  Yes, there were only a handful, and only one who truly helped me out, but how lucky was I to have even one person willing to step up and help?  Some people have none at all.  Also, a newer circle of people whom I hadn't known too well before were really there to support me emotionally once I came back to my house and tried connecting with them again.  As a result, I became closer with them and have now forged deep friendships with several.  Now, losing my old friends feels far less important, and it was actually a blessing in disguise because I share much more in common and values with this new group anyway, but during the worst times when things were more raw, any time I could focus on the love or hug or small trinket a new friend brought me rather than the disappointment of an old friend, I was much better off.  So I'm learning that where we put our focus plays a huge role in our attitude and well-being, and maybe even our healing.  If you focus on what's lacking (an all-time favorite of mine), you'll never be wanting for examples.  But if you focus on what's right, on what you do have, that list may be much shorter (at least at first), but you'll be far happier.

>>  The Ways We Do/Don't Connect.  Going through this experience finally helped me understand why some patients for whatever reason don't post or stop posting.  Before all this, I was a frequent poster and reader of the blog, and I couldn't get over how people who were sick wouldn't want this treasured resource, or how people who had recovered would leave and not help others.  But when this struck, I was in such a dark place that I just wasn't up to communicating with people, and when I tried it actually felt worse and wasn't helpful.  Plus, no patient had been through anything like my situation, so I couldn't "compare stories" as I was used to with the bladder.  (And the few patients who responded to an early post of mine asking if anyone had problems after an injury reported they were still struggling after many months, which only scared me more.)  Sometimes, talking about things is helpful.  But other times, it just may not be right, or the right time, or the right forum... and for some people it may never be their desired way.  Also, regarding the many patients who drop off once they get better:  as much as it's hard for those still fighting, I do have more understanding for the recovered patients' perspective.  Yes, it'd be so helpful to hear more from them and have their support, but for goodness sakes, IC took over their lives often for years/decades!  Now they're finally FREE.  Maybe they want to stop living in this world and start living their lives. Maybe even going onto the site is too hard, brings up too many memories of what they understandably just want to forget.  There's also the consideration that after so many months/years out of work and the expenses of treatment, many (like me now) are having to work hard/long hours and can't devote the time to the site we once could.  All I'm saying is this experience increased my non-judgmentalness more... I respect that everyone has their own perspective, feelings and way, even if I can't understand it now or ever.

>> Dependency.   During my incapacitation, I was so angry about being so dependent.  I hated what I considered being a burden on others.  But, for one thing, the word "burden" was my perception, not reality.  Moreover, it was an assumption I made about how others felt.  Who knows what they thought?  And the truth is, luckily for me, most seemed grateful to help, and one friend even shared, "Please! You're always the one helping other people, I'm glad I finally have a chance to help you."  Another lesson I learned from all this is that with dependency comes great humility.  Sure, I wouldn't sign up for this experience to gain more humility!, but seeing as it happened anyway, I'm grateful for the lesson.  Sitting back and having others take care of you is hard, especially those who were more givers (like me) than receivers.  Before falling ill, I was always someone focused on giving and had done lots of volunteer work, but in this experience, I realized I wasn't comfortable in (or fully educated on) the receiving role.  There are many reasons why receiving is an equally important ability, but also, to really be a good giver, I learned that you need to know how to receive and put yourself in the shoes of that receiver.  Giving can precariously teeter toward (or have elements of) pity or ego-inflation, no matter how sincere the giver.  Also, and this was a big light bulb moment for me,  my receiving allowed others to give, which makes receiving equally powerful.  (And technically, giving people the opportunity to give is in itself a form of giving.)  With the help of my great therapist, I also delved into how my feelings of being a burden were connected with my childhood feelings of unworthiness and being told in one way or another how unwanted or burdensome I was just for existing.  So I had been mingling the past with the present, feeling myself to be a burden because of past feelings rather than any present evidence.  Once I saw all of this, it allowed me to accept help more easily and graciously, which reduced my self-induced suffering and guilt over dependency.

>>  Illumination.  In hindsight, health crises tend to happen during/after a point where we need change in our lives, where something really isn't working, or where we're perhaps not taking care of ourselves.  It's like the illness pops up to illuminate this and make us change our ways.  I wish this illumination came before illness had to strike, but I guess sometimes it takes a megaphone to get through, or when we're in the thick of things it's too hard to see, or sometimes all the dots don't get connected until long after.  I am absolutely no expert to speak more on this, and I am not insinuating that these awful things happen "for a reason" per se.  No matter what your religious persuasion, none of us really knows the "why" of things.  Plus, I'm not all high and mighty now; I know if things took a turn for the worse tomorrow, I'd be begging for mercy over illumination.  But if we must endure such suffering, finding ways in which our (and others') lives can be bettered as a result of it means that at least some light can come out of the darkness.

Blessings of love & healing to you all.