Today is definitely a rest day. I've been napping up a storm the past week or so, especially since I had that really rough day without the meds. I've spent the last few days trying to recover from that, but I pushed it too hard and went down yesterday. The awards ceremony really took it out of me, and yesterday when I met up with E for a lunch meeting followed by work, I almost passed out in the restaurant. I was soooo sick.. apparently I went whiter than a sheet, and I barely made it out the front doors to the car. I had to leave my car there while she drove me home, and needless to say we didn't get to work that day. (No paycheck this week. Bummer.) She called me today, worried like crazy, but I assured her that I am alright. Apparently she had a panic attack on the way home, she was so worried, and she was talking about it with her husband (who adores me like I'm one of his own, and I totally love him too). Poor E. I did just what she said and rested as soon as I got home, though. I spent the rest of the day in bed feeling pretty lame after sleeping a few hours, and I've done the same today. Just woke up from another 4 or 5 hour nap. Sleep is nice. It keeps me from hurting while I'm doing it lol. Also, I haven't been sleeping well due to nightmares and increased pain at night, so I often wake up after a few hours, stay up with C until he goes to sleep, then crash out again with him. It's nice to be able to spend so much time with him, though!

I sincerely hope that this passing out thing is just a fluke, a product of overextending myself and using up all of my resources, rather than a new symptom come to torment me. I've been struggling with lightheadedness and fatigue for some time now, but this is new... and really, really unpleasant. Truth be told, it's terrifying. I'm scared to leave my house now. What if it happens while I'm driving? While I'm out and about on my own? Bad enough that I never know when a twitching fit is going to strike, but now this? I'm scared that it's a sign that my body has taken another step on the road to breaking down. Maybe I'm a hypochondriac, but dysautonomia was the first thing that came to mind. Of course. lol. But then, how can you not be a hypochondriac of sorts when you don't know exactly what's wrong with you and you've got a whole buffet of symptoms at your disposal that could point to a bagillion things? Yep. You just roll with it and keep your fears to yourself... and then spill them onto your blog. Heh.

I broached the topic of guilt with E while we were driving home yesterday. She put me in my place for even daring to compare her sickness and mine, vehemently stating that she deals with a different illness with different symptoms and she has to take care of herself in different ways. She said there was nothing to apologize for when I told her that I was sorry I couldn't work and that I was sick, and she told me not to ever apologize for that again. I love that woman. I explained to her my guilt about her working so much and being so sick, yet I can't/don't/won't. She just shook her head and said that she has to see the HJ grow. I brought up my theory about that being what she has to do to survive, but it's not me.. and she kinda agreed. Like, the HJ is her baby. In the big picture, she has to see it grow and flourish. It is necessary to her personal well being, even if that means putting up with sickness in the meantime. I want to see it grow and flourish, too, but it's just not the same. And so she has to hid her sickness in a way that I don't have to, because she's being watched by certain people and agencies in the community and they will strike at any perceived weakness. One thing I do know, though, is that she would be far sicker without me. I help her a ton, and we help support one another. We hold each other up. So my guilt is alleviated. We both survive on our own terms, and mine isn't wrong... just different.

On a happier note, J officially booked the ticket that will take me to her family's home so we can spend Christmas together! Bwaaaaaaah! I'm so excited. We haven't seen each other since... since... like, spring of 2012. It's been a year and a half, abouts. Far too long. But distance cannot separate the hearts of true roommates! Haha. Anyway, her parents are being super generous and buying me a ticket to fly out there, then she and her mom and I will drive back to Y and drop me off before they continue north to see J's uncle and J flies back home. I still am having a hard time absorbing the reality of this. I mean... that is so incredibly generous and kind of Uncle S and Auntie C. I just... wow. Wow. Like, what did I do to deserve this? Makin' their daughter happy, probably. lol.

Coraline has become quite brave and comes into C's man cave with no trepidation, rubbing up against C's computer chair and accepting petting from him. This, from the cat that fled to the other end of the house at eye contact with him just a week and a half ago. It's because she and I bonded well, she trusts me, and so when I "lured" her into C's room while he was in there she trusted that it was ok. After the initial exploration of trepidation, she's a bold little bugger. Her favorite new toys are a pink eraser and a white board eraser. She plays with those things with such ferocity and focus... it's adorable! I am keeping both kitties inside today, though, especially Coraline the black. People do sick things to cats on Halloween, especially black cats. I'm sad to say that this is the case, but you just work with the reality you've got.

I made a tentative friend through an online forum, and C and I are going to meet her for the first time tomorrow. I've been looking for female friends in my community, since most of the friends I have are guys, and all of my good girlfriends are eons away. I'm lonely for ladies. However, it's not like I can "get out" and make friends, so I am cautiously trying the internet. Taking C with me is a good precaution, I feel. I have a good sense for creepers and so does C, so if anything's off the odds are that we'll notice. Plus we're meeting in a public place, so that's much safer. I hope it pans out! As much as I'm an introvert, I do miss having friends over just to chill now and then. I kinda wish I was well enough to do something for Halloween. I miss dressing up, mostly because it's fun and I love the theatric, but also because of the social aspect. If I were feeling ok, I might even try a bar this year, just to see what all the fuss is about. Not like I can drink anyway. But eh... I'm going to keep the porch light off, ignore the knocks. We didn't buy any candy, and I do not have the energy to get up and down answering the door every few minutes. I wish that I had The Nightmare Before Christmas to watch, though. I love that movie... C hates it. He and his brother are both super freaked out by claymation. Funny fear, right? Anyway, today's the perfect day to watch, especially with C at work. It's a family favorite. I have so very many pleasant memories associated with that movie... very nostalgic. I like nostalgia.

Survivor's guilt. Wikipedia says, "Survivor, survivor's, or survivors guilt or syndrome is a mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not. It may be found among survivors of combat, natural disasters, epidemics, among the friends and family of those who have committed suicide, and in non-mortal situations such as among those whose colleagues are laid off."

 I think that chronic illness fighters deal with a type of survivor's guilt, though it's not the standard definition. I mean, we have survived a traumatic event in a way, as our illnesses frequently strip away even the vestiges of our former lives, carving us into a hollow shell of what we used to be and planned to be. The guilt, though, lies not in the fact that we have survived and others haven't (in the sense that we lived and they died), but in the sense that we have survived and they haven't had to learn to survive this at all. We feel guilt because we do things differently to survive, and we no longer fit in with the lockstep of "normal" expectations. I feel guilty because I am a survivor, and I do whatever I have to to make it through the day. I feel badly about myself when others around me do not have to take such drastic measures to cope with the daily, minute stressors, when they are able to sally forth into the dawn, skipping meals and losing sleep and still able to put forth energy that comes from some boundless spring. Sure, maybe it's not as boundless as it would be if they properly tended it, but I have to concentrate all of my efforts and planning and foresight into cultivating the same trickle that they get when they carelessly wander through a day.

I feel guilty for surviving on my terms. 

I feel badly about myself when I don't have a concrete answer to hand out to people when they want to know what's wrong with me. I can't adequately combat the well-meant suggestions because I don't know if it would work or why it didn't work when I tried it, because I don't really know what's wrong with me.

What do you say when someone asks if you're feeling better? I smile, I make something up, and I feel guilty. I survive, however I have to.

I take my pain pills, knowing that they're damaging my body and not a long term solution. But what can I do? I went without for less than 24 hours and I was so sick that I could not sleep or eat, in addition to the ripping pain. Even now, I'm on my proper dosage but I've got this ever-increasing migraine pressing down on me. I know that a vanilla coke will go a long way towards setting me to rights, and I know that some folks would disagree, but I'm surviving.

What gets me the most is when I have to make the public appearances, to go out and do stuff, and people see me and think that I feel better. They have no concept of what I mean when I say that "I'm sick a lot. I'm sick right now." They absolutely cannot fathom the levels of energy that I'm losing just by sitting in a crowded room buzzing with conversation. They don't understand how much it takes out of me to sit in a chair and focus my attention on a stage, on the words being said. When I say I'm tired and I want to go home, it's not because I'm bored, or a little fatigued from the day's efforts. No, I mean that it's probably dangerous for me to be driving but I'll do it anyway because I have to. I mean that I'm having a hard time focusing my thoughts on conversation and it is difficult for me to focus my eyes. I mean that my body aches and my stomach is as upset as if I had a stomach virus. I mean that there is a thick, wet blanket between my senses and the world they're supposed to be interpreting. I mean that my pain levels are spiking, and I'm likely employing breathing techniques just to keep from groaning aloud. I mean that I can feel that I am going to be punished for this in not too short a time, and I don't want to be around people when it happens. I don't want them to see me at my weakest; it will just alarm them. I don't want the energy drain that comes from being around people, any people. (Except my husband, oddly enough...) I don't want noise, I don't want conversation... I just want the comfort of silence, my cats, my couch... familiarity. Comfort. Cool quilts against my face. A glass of water at hand, a mug of peppermint tea for my inevitably upset stomach. Dim lights for my aching head.

And so I try to leave before I get to that point... but I feel guilty. I feel guilty because I'm surviving, however I have to. I hate being in that place, the crash after the adrenaline-fueled outing. I'll do what I can to avoid it. And yet, so often... I feel guilty for surviving on my terms.

Why? I know why.

It's because I don't believe myself.

I know my body. I know my pain patterns. I can tell when I'm getting sick, when the pain is spiking, when I NEED another pain killer to stymie the big spike that's coming that kicks off a cycle of uncontrollable, fully body pain. I can tell when I need a nap. I can tell when the autoimmune side of things is flaring. Granted, there's still a lot I don't know, but there is also a lot that I've gotten good at pinpointing. I know when I need to eat. I know when I need to sleep. I know when I need to stop doing an activity. But all too often... I ignore myself.

Why?

Because I minimize. Ohhhh, do I minimize. I catch myself doing it when I do presentations about my abusive past. It wasn't really that bad, if you think about it. I mean, all that happened was... Did that really happen? I think I'm probably exaggerating what happened. It wasn't that big of a deal. I need to just get over it and stop assigning so much importance to little things.

I didn't realize how much I minimize until C and I were discussing some of my symptoms, and he mentioned my need to eat frequently and right. when. I'm. hungry. If I delay, I get very ill. He's seen it. It's not a secret. It's something I've been dealing with since my teen years at least, and it's just one of those things that we work around in every day life. And yet hearing him describe what happens to me when I get sick from lack of food, well... it was... empowering. It was like a light bulb went on in my head and I thought, "Aha! It's real! I really do get sick! I get very sick, and someone else has seen it! Wow... that sounds terrible. That's kind of a big deal. Huh."

I had a big tussle with minimizing after my rheum blatantly stated (twice) that she didn't see the need for me to be using my walker. I came away seriously questioning myself in many aspects, wondering if I've been wrong and just exaggerating my symptoms all along... if I can really trust myself to know when and if I need something... because, after all, she's a doctor, so she must know, right? I felt guilty for surviving. C tried to put that to rest, assuring me that I use it and my pain meds wisely and judiciously, and that I know my body. He stated emphatically that I am not a wimp or a complainer (which is a great fear of mine-- perish the thought that I should ever become a weak, dependent, whiny loser like G!), and that I know myself. I know what I need to do, and I do it, and the doctor can go fuck herself. I'm inclined to agree... when I'm thinking straight.

My emotions and the self-talk going on in my head tend to get all tangled up in a tangly ball of tangledness, and it gets messy up in there. One of these days soon, I want to draw up a list of "what I tell myself" and "what is, a.k.a. the reality of the situation". Kind of like a cross-referencing chart, you know? So that when I begin to tell myself a certain thing, I can look at the chart and say, "Nuh-uh, that's not how it REALLY is!" Then I can follow that up with the truth. I'm excited for that. I just don't have it in me to create that right now.

I went to an awards ceremony for contributors to the local community because I nominated THJ as non-profit of the year, and we made the cut into the final category! We didn't win, but we still got an award for making it into the nominees. One of our volunteers was also nominated for Volunteer of the Year, so she got an award too. It was a fun chance to dress up and meet a lot of important people, but I'm still getting over being so sick yesterday and I was drained and ready to go home by the time the mingling hour was done. By the time I left I felt pretty bad, and I am definitely being punished for my outing. But you know what? It was worth it. I have some thoughts on my boss's own chronic illness and pain and how that helps/hinders our working relationship and friendship, but now's not the time. This is long enough already. However, I'm not working tomorrow because I did tonight, and that's a whole 'nother load of guilt. She's all sick and in pain too, but she works herself into the ground from her home office... while I'm at home, lying on the couch. I'm sick, she's sick, but she's the one doing so much work... and I feel guilty for surviving however I must. But I must remember that working myself into the ground and possibly ending up hospitalized doesn't do either of us any good. I'm trying to cope long-term, here... trying to survive in length. But oh, the guilt...

I know it's there. I know partially why it's there, even. But what I haven't figured out yet is how to be rid of it. I think that chart would help. I need to set the Should Monster straight again. It's been too long.

Coming soon: a post exploring "survivor guilt" and a check of self-talk vs. reality. Something that's been building for a while, especially now that I'm gaining weight. Just wanted to put this out there so that I remember, and so that I'll actually do it. I need to think through it, and this is where I do some of my best thinking, but it takes emotional effort so I can sometimes tend to avoid it.

I'm holding myself accountable. Hah.

And now to go get fabulous for a big-deal fancy dinner thingie because I nominated our nonprofit for Nonprofit of the Year for our county, and I really hope we win! I'm going to wear the green dress that I originally bought for my wedding, the one I wore the other day to the haunted house when I went as Meridah. (Meridah with really short hair and no bow lol). It's lovely, it's comfortable, and it's not too over the top. I would wear my shiny blue halter dress, but I fear it's too formal. It's more fitting for Prom, and I don't want to be overdressed. I may look like a weirdo in my renaissance dress, but I'd rather be a comfortable weirdo than a shiny, out of place weirdo. Of course, I'll have my walker to complete the weirdness. Maybe I should lash one of my swords to the side of the walker? Or one of C's axes. LOL. They probably wouldn't let me in. Hehehehe...

"Hang in there. We're all praying..."

News flash. I'm not getting better.

Chronic illness. Chronic pain.

Chronic.

Maybe I'm a pessimist.

So sue me.

Here. Alive. Still recovering from the vigil...

That, and C's computer "broke" two days ago, the very day that I wanted to spill myself all over the keyboard and leak into the screen. Didn't happen, obviously, 'cause the computer was down. Then it fixed itself. I made C back up his most important stuff, just in case, since he had never gotten around to it.

Ran out of pain meds yesterday morning-- took the last one sometime before noon. Not even 24 hours without prescription meds and I was a quivering, whimpering mass of painsomnia and awful flu-like symptoms. I essentially staked out the pharmacy this morning until they opened. I still hurt now that I've got the real stuff in me, but it's so much less in comparison that it's almost laughable. And maybe it's just that the overall general crappiness has been diminished to the point where I notice the really specific and intense pains?

You know what? I don't care. I just care that I can breathe again, and look in the direction of the fridge without threatening to toss my cookies... or think the word "cookies" without threatening to toss them.


I don't care who disapproves. I love my pain meds, and I cannot function without them. I would sell my body for money if I had to, in order to be able to afford them. I joke about that sometimes, but I'm deadly serious about this one. With the memory of my Night of Horror so fresh in my mind, I know that I would do a lot of things short of thievery or murder to make sure that I stay in meds... if I could move well enough to do them, that is.

 Yesterday was crap for both C and I. (I'll explain later.)

Today is D's birthday, or would be if he were still alive. I've already spent some time weeping loudly and rocking back in forth in grief, and it's only 9 a.m.

Tonight is the vigil.

I woke up with trouble walking in addition to the usual high pain levels. Yesterday when I practiced my song, my wrist and arm was spasming and cramping for the next 5 hours. Mer.

But I'm determined that today will be a... well.. a good day? An important day, if nothing else. I can still move around, albeit slowly, and I did most of the prep for the vigil yesterday. Yeah. It'll be ok. I'm nervous, but that's always the case when I get up front for stuff. I get nervous before hand. It's my fear of failure.

Oh, and I made the front page of the local paper yesterday with an article about the abuse that I survived as a child. Part of the publicity campaign for the vigil, and because I'm one of the speakers. When I read it, it's like I'm reading about someone else, and it horrifies me that someone should have to live through that. When I think about my own experience I minimize, minimize, minimize. But seeing it in black and white, in someone else's words? Yeah. It makes it real, and then I'm like, "Shit. I'm amazing!" LOL

So. On with the day. I'll report back... eventually. Work laptop died yesterday (told you it was crap) so I'm using C's comp again, and it's kind of a pain to boot this thing up and then sit in one position in the computer chair. I don't care so much for it.

I had some great things happen to me yesterday, of which I will speak later, but for now I'm going to bitch and moan briefly. Why?

Because the fibro (and whatever else I've got) life sucks.

Because...
 I feel crappy and the past week has been crappier feeling than usual.

I've spiraled down even further and I don't know if this kind of crappy is gonna be my new normal like how I keep hoping that each new downward spiral isn't my new normal but it turns out that it is.

I am having a difficult time practicing for my performance for the Vigil because of my hand and arm problems, and that bothers me on so many levels. I like to be prepared. And I like being able to use my hands and arms for stuff.

I really just want to take a bunch of pain killers and not feel crappy anymore but I can't cause I'm so damn responsible and I refuse to abuse my pain killers again.

I've figured out an analogy for how I feel: it's like a very bad flu (lethargy, fatigue, nausea, headache, blurred vision, tender skin, weak, shaky, achy), and then it's like your entire body has the worst period cramps you've ever felt, all at the same time.

It's so hard to try to live a normal life day after day. It wears you out.

I truly resent and then feel bad for resenting those whose biggest health problems are the cold they caught once this year.

I dragged myself to group tonight, to be there for the girls. (I often question whether I'm really needed there when there are other facilitators, but I realize that I'm the young, happily married one that pressed charges against her abuser recently. I fill a vital role.) I claimed the couch for myself, and as I settled in wincingly and groaningly E announced to the girls that I was feeling sick today but that I would be better soon. Doesn't she know any better? She, of all people, knows that I'm not going to be feeling better soon. Pessimistic? Possibly. More realistic than anything else. Just looking at patterns. It contributed to my foul mood in a way that I don't quite understand.

I am filling up the tub for my second hour-long-epsom-salt-super-hot-soak-to-try-to-bear-the-pain today.

I've taken more pain killers than prescribed today, but only when I felt the pain rushing and rising in the familiar way that tells me that it will soon be at a 10. It goes from 6 or 7 (where I'm at with pain killers) to 10 so quickly... within minutes. I have to act fast to have any hope of catching it at a catchable place. I would have tried to wait out the 6 hours between pills like yesterday if it weren't the same pain and same levels as yesterday, which had me contemplating the emergency room on the verge of tears while I waited out those 6 hours. And I had work today. Not happening. Totally incapacitated.

I came home and yelled and slammed stuff while I made a bowl of oatmeal and scared the cats. Oops.

I spent most of the day lying on the floor of my craft room on a heating pad. I spent most of yesterday lying face first on my bed with my hands above my head because it was the only position that didn't bring tears to my eyes.

I hate this part of my life.

I have to get up at butt-thirty tomorrow morning to speak to the military leaders about domestic violence, and I'm nervous.

I'm breaking up with my rheumatologist tomorrow, and I'm nervous.

Okay. Rant over. I'm going to soak in this lovely lavender scented tub and finish watching the Avengers and play with my pumpkin kitty that is goofing off next to the tub. (She has SO many funny quirks! One of them is she can't stand to be separated from me, especially while I'm in the bathroom, and especially while I'm in the tub. She hangs out with me the whole time and either naps or play-fights the rugs in between peering over the edge of the tub and asking for head rubs.)

Life's not all bad. Just sometimes my frustration quotient hits max capacity and I have to blow off some annoyed steam. I do feel better now, actually. Got the negative out so that I can focus on the positive.

Thank you, blog. You're always here for me :)

Dear Dr. L,

I feel as though there are some things that need to be clarified that have been impairing the
effectiveness of our doctor-patient relationship. I am open to the fact that I may have misunderstood
things, and that you may have been working with thoughts and motivations completely unrealized by me. If that is the case, I apologize. However, I do not feel that maintaining my business with this
practice is in my best interest as a patient. In the past year that I have been a patient of yours,
my overall health and subsequent quality of life has decreased to such a point as to be laughable, if
one were not too busy crying and pitying me. Despite seeing me regularly through this time, the
records of my visits routinely note that "the patient has no difficulty performing daily activities",
despite my consistent and frequent protestations to the contrary.

My husband brought up a very poignant illustration of just how far my health has deteriorated. This
time last year I could almost hike to the top of Telegraph Pass, he said. Now, I'd be lucky to make
it out of the desert parking lot and up to the trail before having to turn back from pain, fatigue,
and general weakness. I have continually emphasized how regular, normal activities are becoming harder and harder for me to perform to the point that I am at the point of almost total debilitation, yet I do not feel that I am being taken seriously. Perhaps the blame lies with me in not being clear enough
about the severity, frequency, and variety of my symptoms, but the sense I get is that I'm being
dismissed. It's like if I come in and say, "Oh, my sickness is at a level 7. It's debilitating, it's
ruining my life," you take it as my sickness is really only at a level 4 and I'm not really that
impaired. I even brought in that "FMS Rating Scale" in an attempt to get you to understand the
severity of my pain and other symptoms.

The short period of time that I was using prescription pain killers in excess was a desperate attempt
to to control and somehow manage this pain; to get back to a somewhat normal standard of living. I
have, I thought, been very clear about the profuse, intense, and increasing amount of symptoms that I
have to deal with, and the disability that has come as a result. I feel that not only is my sickness
not being taken seriously enough, but I feel that the measures I am taking to cope are being
dismissed as exaggerative, such as the need for further pain control or for mobility assistance
devices like my walker. I am not sure how you were unaware of my having it until now, as I've brought it to several appointments with me, and I have had it since last December. I bought it for the plane trip back to W to visit my folks. I knew that I did not have the physical endurance to both walk
through the terminals and carry my bags without becoming so ill as to be rendered immobile. The cold of a W winter, and the fact that I was not yet on pain killers, forced me to use it for mobility's
sake while I was there, as I could not walk normally due to pain. (This was back when the pain was
localized mostly in my lower half.) When I got back home, I didn't use it for a while, feeling that I
did not need it for basic mobility. After a time, I began using it when I knew that I would be
standing or walking for a long period of time, and the pain from that would make moving very
difficult. It was also handy for the fatigue that accompanied long periods of walking or standing. As
time went on, my pain increased and my endurance decreased, and I began to use the walker more and more. My husband got me the walking stick that I think you remember so that I would not have to cart the walker around and endure the stigma of a young woman with a walker (no matter now neatly
decorated), but that way I still had something to help with mobility issues due to pain and fatigue.

That worked well, until recently the pain in my hands became so great that using the stick is out of
the question, and I have come to rely solely on the walker as my means of mobility aid. I explained
to you at the last appointment that I use the walker to help with balance, to help me walk when pain
affects my mobility, and to provide a resting place when fatigue/nausea/lightheadedness overwhelm me, which is frequently. My endurance is at the lowest it's been, and a simple grocery shopping trip of half an hour requires several rests, sometimes ending in my husband or a friend wheeling me around on the walker like it's a wheelchair because I am too sick or in too much pain to walk myself. That happens more often than I'd care for it to... as in, it happens on a regular basis.

Another concern of mine, beyond not being heard and/or dismissed is what would appear to me to be
false reports in my records. In the "Rheumatologic Exam" section of each appointment, results for
various examinations are listed as though the exams were performed at every appointment when this has not been the case. I recall only 3 appointments at most in the entire year that I have been seeing
you that I have been touched or manipulated in some way for an exam; certainly not at every single
appointment. It troubles me that at every appointment my joint and flexor tendon examinations have
results reading "Normal exam", yet I was never examined. The trigger point examination notes diffuse trigger points throughout, but I am not re-examined for this (though it's true). Also, I noticed on my chart that I have an assessment of "fatigue with polyarthritis". Why has polyarthritis never been mentioned to me, and why are we not addressing it if it has been determined that this is an illness I'm dealing with? You have seen my health declining rapidly over the past year, yet it would appear that an apparent lead to managing my symptoms is being ignored. I need an explanation on this. Even my general practitioner, whom I saw recently, is alarmed that no further diagnostic action is being taken given the decline of my health and the elevated titers that sent me to your office in the first place.

I do feel a little more as though you appreciate what I'm telling you with the hand x-ray and
ultrasound that was ordered, but this seems to me to be the first decisive action towards further
exploration of my condition in a long while. I understand that the diagnostic process takes time,
especially with the types of diseases that often mimic one another, but surely there must be a more
aggressive manner to pursue diagnoses? I feel that the symptoms that I bring up are casually
acknowledged and then dismissed. You sprang into action when I mentioned hand pain, but what about the insane spinal pain that I've been telling you about for several visits? It concerns me, but it is
not even mentioned in the notes. The fact that I have recurrent fevers and sores of the scalp, mouth,
and nose seem to be of little to no consequence to you. That you note that I "insist" that certain
symptoms are related to autoimmune diseases makes me feel like I'm seen as some patient who decided she had something she found off of WebMD, not to be taken seriously. My general practitioner affirmed my inherent understanding of my body and the autoimmune connection right away, and while she corrected me on some points I still felt heard, understood, and that she was taking action on my behalf and had my well-being in mind, which I am hard-pressed to say about the care I have been receiving here.

My husband made an extremely valuable point, though, which is that when you see me, I am at my
"best". I'm out and about, I'm dressed, I've got my makeup on, and I'm running on adrenaline to make
it through being out of the house. You see me when I'm "okay". I'm sitting up, smiling, talking,
cracking jokes... it seems that I'm doing okay. But you don't see the aftermath. You don't get to see
that I barely make the drive back home and then crash on the couch for the rest of the day. You don't
get to see the pain spike because I used my energy reserves for the day at that one appointment, or
the fever that comes with overexertion (or for no reason at all!), or the nausea and dizziness that
keep me prone even if I weren't so bone-tired and wracked with pain. You don't see any of that. You
see a relatively happy, healthy looking girl who wanders in with a walker. So I see why you might not
be taking me as seriously as you ought to.

If we do end up working together again in the future, I want you to take me seriously when I tell you
that I am seriously impaired and that I live with devastating pain on a daily basis that is not
adequately controlled by pain medication or the alternate coping methods I employ. I need you to
understand that I am worsening over time, not getting better, that I am alarmed by the rapidity and
severity of my symptom development, I worry that I will be completely disabled in the near future and that my life has literally been ruined by whatever is going on with me. I want you to understand that while it's easy for you to listen to my litany of problems and then wave me out the door, I have to
live with every single one of them, every moment of every day. Nothing we have tried so far has made any of it go away. I want you to realize, truly realize, that I am becoming increasingly desperate
and unsatisfied with my quality of life, and that depression is becoming a major problem for me. This
is why I am seeking help elsewhere.

It's the strangest thing... I was minding my own business, making a bowl of oatmeal, when I was suddenly hit with a very strong and vivid wave of grief for the babies that I lost.

I don't know why I thought of them. But I'm very sad.

I suppose in the grand scheme of things it's "better" that I don't have any chilluns right now, because life is challenging enough with just myself to take care of at this point. It would be hard on the little one, having a sick mother, and it would be hard on C, trying to provide for all 3 of us. (Or 4?)

That doesn't mean it doesn't hurt, though. Even after all these months, it still hurts.

The inside of me wants to do things.

My mind swirls with dozens of different options.

I could organize my craft room some more.

I could clean the house.

I could scrub out both showers (but especially ours!).

I could make those ribbons.

I could get fancy and take that picture.

I could give the cats a bath.

I could paint/draw/chalk.

I could make those earrings.

I could do laundry.

I could put away the laundry that I did last week.

I could cook something delicious.

I could bake something.

I could organize my kitchen cabinets.

I could clean out that set of drawers and move it into my craft room.

I could watch another movie.

I could go for a walk.

I could make some more Christmas presents.

I could wrap some more Christmas presents.

I could practice my song for the vigil.

I could practice my talk for the vigil and the military breakfast.

I could take a hot bath.

But the outside of me sounds a bit more like this...

Hruuuuunggggrrrrrblllllllgrphh.... Why did you do this to meeeeeeee?! Don't you move. Don't even think about moving. You can't do any of those things. I won't let you. In fact, you should actually stop typing now, too. No more typing. No fun things, and I know you consider cleaning to be fun. You can't fool me. You're done. Just sit there and think about what you did.

Worst part is, the concert wasn't even good. But the sex was. And I'm paying for both. (And the day of business before that.)

Not fair, really.

The weekend I have planned:

Saturday
-Watch movie and make DV vigil ribbons
-Visit the library and get more movies
-Skype with J
-Doll myself up, take photographs with a sign for a friend
-Play with kitties
-Go to Classics By Moonlight concert (classical music outdoors by the light of the full moon!!!)

Sunday
-Browse the newly opened Farmer's Market
-Tidy the house
-Watch movie, make more ribbons if need be, make earrings if not.
-Play with kitties
-Skype with J?
-Call my mom
-Give kitties a bath

The weekend as it will probably go down:

Saturday
-Watch movie, make a few vigil ribbons
-Skype with J
-Doll myself up, take photographs
-Concert
-Hold down couch/bed/pay for the active day

Sunday
-Pay for Saturday
-Play with kitties
-Watch movie
-Hold down couch/bed/continue to pay

Thank the high heavens that my GP gave me a script for pain meds, because even after 3 days in a row of contacting my rheum I never heard back from her. This, after she has told me two visits in a row that if I'm having a hard time in between visits with my pain or going into crisis not to self-medicate but to call her. Hmm. It was going to be a special kind of hell, going into the super busy DV vigil week with all of my speaking engagements and such with no pain killers.

(I was worried about not being able to get it filled, like that whole fiasco I had a couple of months back, but they filled it with no problems and no questions. I hate going for pain pill refills because I always have this horrible feeling (not from anything they do, really, just because) of being a druggie and that they're going to refuse me my meds and I'm going to have to try to eke out an existence without them... and the thought is absolutely horrifying. I think it has to do with my experience with that jerk pharmacist who wouldn't fill my prescription even though he was supposed to. He is the head pharmacist of that place, so he's god apparently... I really dislike him. Clearly.)

Anyway, here's an excerpt from an email I wrote J in the wee hours of the morning. It's nice to know that even delirious from lack of sleep (couldn't sleep 'cause pain and ptsd stuff), I can form intelligent run-on sentences. :)

"But when I visited my general practitioner today, we had a really good conversation. She brought out the connection between my autoimmune diseases and my insufficient adrenals, telling me that the insufficient adrenals makes it harder for me to fight the autoimmune stuff, and also the meds to fight the immune stuff are immune suppressants, and my body has a hard time handling that because it's already deficient in stress-handling materials. Also, she pointed out that my weight gain can partially be attributed to the steroids that I'm on for the adrenals (which I can't get off of, handily enough, or it could make me seeeeriously sick-- I should be getting my medic alert bracelet for adrenal insufficiency, food and adhesive allergies soon!) and the fact that I'm now pretty much completely sedentary due to the pain. The meds have some to do with it, but the sedentary lifestyle is the bigger part. She did make it a point to emphasize that I'm still within healthy BMI limits, just heavier than I was a year ago by 30 lbs. She completely believes me about the autoimmune (and brings it up and points out connections between symptoms at every single appointment), supports me in my decision to switch rheumatologists (she even said that she hopes this new doctor is more aggressive in treating my autoimmune problems because we can't just hang on to an undiagnosed connective tissue disease label forever and call it good, especially since I'm just continuing to decline and not even in a holding pattern), and told me that I've had a special place in her heart ever since she first saw me because I'm so young and suffering from so many different problems. 

It really just kills her that I'm in so much pain and so sick at this stage in my life. She travels a lot, so I think she is looking at me and seeing my opportunities for adventure completely disappeared, much less a typical fulfilling life for a twenty-something... you know, a family and work and such. I really enjoy visiting her, because she genuinely cares and really wants to do everything in her power to figure out what's wrong and to help make it right. That's what I want out of a rheumatologist, but I'm not getting. She even said that my symptoms and diseases are beyond her scope of practice, but she'd help me if she could. I wish she could. She was the one who discovered that my titers were elevated ("very high!") and sent me off to the rheum where I got my fibro diagnosis right off the bat. She's been the aggressive tester and treater, and I hardly ever see her. My endocrinologist is a religious tester as well, and I only see her every 2 or 3 months. I get more tests done from these two than I have my entire year with the rheum, and they're supposed to be the ones figuring out what the heck is wrong with me! Shoot, I saw the neurologist all of two times, and he did more tests than the rheum had in the entire year to figure out the problem. Why did I not see this sooner? I guess I just like to assume the best about people, assume that they're working to their utmost capacity... I sure hope this new practice accepts me. They can decline me, after all."

I think that says it all. Very wordily.

Coraline and Juneaux are adorable, but C is just so much cuter! Last night we were grocery shopping and I was in a lot of pain despite my meds. The longer we shopped, the worse it got with muscle spasms and such, so soon I was not only limping but bent double over the shopping cart. C didn't say a word about it, just stayed by my side and caressed my arm and my back, kept a supportive hand around my waist, etc. All little things to let me know that he saw my pain and he cared, though he couldn't do anything to alleviate it.

Later on during the trip I asked him, "What's the best gift you've ever gotten?", just making fun conversation. He gave me a silly look that let me know he was up to something and held up his left hand, pointed to his wedding ring, and said, "This right here!" with a big goofy grin on his face. SO CUTE!! lol. I told him he definitely scored brownie points for that one, and of course I had to give him a big, sloppy kiss :)

Oh good grief.

I thought I had written a post the other day, but it turns out that I wrote it in my head and never actually typed it up. That happens more frequently than you'd think. Most of my thoughts vanish into the vapor without ever seeing the light of day, and considering how much I talk and write you can see the volume of thought that is constantly pouring through my head!

First of all, my husband is a fantastic support for me. I broke down when he got home and cried (of course) and ranted (naturally) and even went so far as to accuse him of not being supportive of me. I immediately apologized, and he accepted it graciously. He held me close and said, "Well, you're angry. It's ok." And you know what? He was right.

I hadn't realized that I was angry. I am angry. I'll have to explore that more in depth later, but I am angry. I'm angry with my doctor for not taking me seriously and not pursuing adequate testing and treatment options for me, for letting me get to the state of health that I'm in without really apparently trying to prevent this rapid decline, or even believing it. I'm angry that I hurt all of the time. I'm really angry about that. I hate it and I want it to stop. I hate that I'm losing the use of my arms and hands, and that I had to get a friend to drive me to my doctor's appointment because I couldn't lift my arms and I was twitching all over. I'm angry that, despite "treatment" and stronger pain killers (that I'm taking as prescribed!!) I'm still in so much pain that I've cried every day this past week.

Anyway, I then proceeded to vent some more, and we cuddled, and he affirmed me on my physical appearance as I requested, and all was well. Earlier that day I had practically crawled to my friend's pawn shop to take advantage of a dollar sale for Christmas gifts, and I spent about an hour there talking and laughing with two of my friends. It was definitely a mood booster, and even though I felt little better physically my spirits were lifted. Then when C came home and I was able to just explode with the pent up emotions I felt so much better. I was actually laughing and joking lightheartedly by the time I went to bed even though I still hurt badly.

Support systems. They're what will keep you going when you can't go any longer on your own. J, C, E, the M's... They've got my back. I'm so, so grateful for friends that carry me when I don't even have the strength to twitch.

I can't even... I just can't. I'm done. So very, very done.

I didn't sleep last night. (I should be trying to sleep now, but the pain is hammering away at me and I'm thoroughly distracted by it.) I was definitely at a 10 on the traditional pain scale, and having a full body twitching episode to boot. C held me while I cried. Well, ok, I dozed some eventually... but I kept waking myself up with cries and moans of pain and alarm. My PTSD symptoms have been escalating gradually over the past few days, and I'm not sure why. They've been interrupting my sleep, and last night was particularly bad. I've been anxious, too... jumpy. Whatever.

Anyway, I wasn't able to drive because I couldn't lift my arms or turn from side to side, but a friend picked me up and took me to my doctor's appointment. While there, the endocrinologist proceeded to exclaim over how I've gained 17 lbs in the past 3 months.

Great. Thanks, doc. I knew I'd been gaining weight, and I'm trying to eat healthy so as not to gain unnecessarily, but I'm pretty much in enforced sedentary mode, here. Not to mention that the Lyrica made me gain some weight, and I never lost the weight I put on from eating all those damn cookies (oh, those delicious cookies!)...

So anyway, I went in feeling crappy and exhausted and miserable and in pain and came out feeling even worse about myself.

I'm so done.

I'm sinking lower and lower into the pit of depression that I recognize oh-so-well... and I feel like I'm too weak to even try to pull myself out, or slow my descent at all. If anything, I welcome the abyss. It's familiar and painful and maybe this inner pain and shredding self-hatred will distract me from the physical pain that is leaching the color from my life and the life from my soul.

Playground school bell rings again
Rain clouds come to play again
Has no one told you she's not breathing?
Hello, I am your mind giving you someone to talk to
Hello

If I smile and don't believe
Soon I know I'll wake from this dream
Don't try to fix me, I'm not broken
Hello, I'm the lie living for you so you can hide
Don't cry

Suddenly I know I'm not sleeping
Hello, I'm still here
All that's left of yesterday

I've been walking in dark places lately, folks.

I know I've said it before, but living with the reality of intense chronic pain and the other symptoms of chronic illnesses just grinds you down, wears you out, and makes your soul shake from the strain of trying to hold it all together. I tell C, "I'm tired," and I don't just mean physically.

I'm tired. So, so tired.

I have a hard time wrapping my mind around the fact that I've only been dealing with this kind of life for about a year now, and not even a full year since it started out from nothing and worked up from there. It's terrifying to realize how much your life can change on the inside of one short year. It makes me fear for my future. A year from now, will I even be able to walk? To bathe myself? Will I be stabilized? Might I be better? Cured, even? I have no way of knowing, none at all. I could never have imagined living this way. I didn't even know that people did live this way. I did not know that there are people who spend all their waking moments in some level of physical pain, through absolutely no fault of their own. I just didn't know.

And now? I know. Dear god, do I know. And I'm tired.

I could list all the things I'm tired of, but I'm too tired to do that. My heart is just tired out.

I don't want to live this way any longer. I know I keep saying that, but it's always, always true. And it's been more true lately than ever, and I've been more tired than ever, and it all just has been culminating in some sad, bad moods. Yesterday was one of those days, and yesterday was the first time in a long time that I seriously thought about taking my own life, or at least bringing myself to physical harm. The absolutely terrifying part of it was the lack of emotion with which I contemplated this possibility, though. Always, in the past, my suicidal ideations have been accompanied by intense despair and distress, an intensity of emotion and thought that whips me into a frenzy, desperate for relief. I am desperate for relief, yes, but not frothing and foaming inside. I genuinely worried myself last night, so I asked C to lie with me a while and hold me and talk with me. He did, and it relaxed me enough to get me drifting off to sleep. Before I went to sleep, though, I sent J this fb message:

"I need help. Some encouragement. Really down cause of pain and sick. First genuine consideration of suicide today. What scares me the most is the total lack of emotion with the consideration.

I need something to look forward to, something to hang on to... Something to live for. Something to get me through because I am weak on every front right now."

She responded with this beautiful show of support:

"Cass, you are so strong and brave. Just the fact that you're asking for support proves that, because you're fighting a war no one should have to face, but especially no one should have to face it alone. You use so much courage every day that it only makes sense that you might borrow some at times!

And hey, the way you feel right now is normal - not good, but it's completely understandable that you feel like ending your life because of all the pain. You're not a bad person to have those thoughts. But please please don't act on them! Your life means so much to so many people. Think of your family - your little sister is going through her own private hell and when she sees you with your happy marriage and productive job, despite everything you have been through and still are going through, I'm sure it gives J hope. And K, and Jr, and your mom, too. And look at how you influenced that high school girl to seek help from an abusive relationship. You affect more people than you even know with your work. And would would E do without you? Or C? You know you give meaning and happiness to his life that he would not otherwise experience.

And of course there's me!! Who would I cry to about all my ridiculous heart-aches and drama?! Besides, I'm counting on seeing you at Christmas. So you can't let me down! 

I am praying for you. (Like it or not! Lol) I happen to believe that God's heart is breaking right now over your pain and despair and that He's longing for the day when He will come back and wipe away every tear, and there will be no more suffering, pain, or death. I don't know why He hasn't healed you now, or even why He hasn't come back yet, but I still believe He will and that He will make all things new. (Too preachy? Sorry.. what did you expect? Lol. But know I'm totally serious. I wouldn't bring it up at all if it wasn't so important to me. Sometimes that's the only hope I hang on to on the dark days.)

Hey, I love you so much. Hang in there, friend! There will be better days. Maybe not 100% better, but better. Don't leave the stage in the middle of your song!"

That, combined with a phone call from her checking up on me this morning, combined with an email from another friend... well, it really helped to give me something to hang on to. C told me last night that another thing I have to hang on for is our future child. He's right about that one.

It's just hard, you know? It's hard to live a life like this. I mean, I know everyone has their battles to fight, and everyone feels like they have it the roughest, and I know that I don't, but it's still so flipping hard.

I read this blog post by Fluted Cups and Ampersands this morning called Sick, Lonely, Brave (Illness is a lonely thing), and it really, really spoke to me. This was another thing that helped give me something to hang on to. I know there's others out there fighting just like I am... and while that doesn't make my pain any more or less bearable, physically, it makes the emotions of it seem less damning and more normal. So even though I'm not super adept at blogging about chronic illnesses and the underlying issues, this girl is, and I think her post is very much worth a read and a share.

Mom told me the other day that her hair has been falling out in clumps. She thought for a while it was just stress, but I told her to go see the doctor. They're running blood panels for thyroid, some other stuff, and for lupus. I hope it's not lupus. It would make my illnesses make more sense if it were, but I hope for her sake that it's not lupus. But, you know, even if it is... I guess I can give her some pointers on living the spoonie life. One of the most important things? Put together a good support system. :)

I'm down today. Just really tired of living life in constant "flu" mode with the intense body pain piled on top of it.

However, I did find a shirt that I want. I think I could wear the heck out of this thing on a regular basis.

Confessions of a fibromite? The fibro life sucks.

I'm having a tough time. I'll admit it.

More mentally/emotionally than anything else... though physically my life has been a challenge lately. Heck, when isn't it these days? That's part of what makes the mental stuff such a challenge. Being sick all of the time and pretty much helpless to do anything to stop it wears out out. It takes a toll on you.

My pain is still nearly unmanageable. I cringe at the thought of calling my rheumatologist's office up between visits to say, "Hey, my pain killers aren't working to control my pain," especially with my brief affair with abusing prescription pain killers. I don't want to look like a drug seeker or an abuser. I just want to live a semi-normal life. I don't want to hurt any more... or, at least, I want to hurt less for longer intervals. Isn't it sad that this is the driving beat beneath the music of my life?

I got blasted yesterday for not being a Christian any longer. I even sorta almost lost my job. That's a story for another time... perhaps. We'll see. There are a lot of emotions attached to that one, emotions I'm not sure I want to touch. But I can say with great certainty that I was not aware there was so much prejudice and stigma against those who choose not to be Christians. It's like we're automatically bad people who destroy everything we touch. Sad. Just sad. My heart breaks for those who subscribe to this philosophy, for they are imprisoned by fear.

My youngest sister is admitted into the psych ward of the hospital for suicidal ideations. She disclosed to a guidance counselor at school that she was essentially having an emotional breakdown and that she wanted to kill herself in a very serious way, so she wound up being committed. I'm really proud of her. That's bravery, right there. It takes a ton of courage to talk to someone about that, especially someone you don't know. I never did, and many times it was only a sense of duty to my family or a curious hope that things might turn around the very day after I killed myself that kept me from at least attempting suicide.

I have friends that think I should report my rheumatologist to the AMA after reading my letter. I don't know how I feel about that. The last thing I want is to get her in trouble, but if she's genuinely doing something wrong then she must be held accountable. I just don't know enough about what is supposed to happen in the course of rheumatologic treatment to be able to pinpoint discrepancies. In any event, I will wait until after my next appointment and approaching her with the letter before making any move in a "reporting" direction, or in a "seeking a new doctor" direction. I want to at least give her the chance to make improvements in her administration of care.

Well, on the bright side, I do have a bunch of fun craft projects to keep me busy. Most of them have to do with the upcoming DV vigil. I've designed the flyers (which the printing place screwed up BOTH times, and I'm quite upset because they are ugly now and I don't want to be associated with those nasty things!) and the programs, and now I'm creating the big poster board displays for survivor quotes and sayings to be written on. I also have another batch of purple awareness ribbons to create, but that shouldn't take me but the course of one evening. I can whip those out in the duration of a single movie.

So here I am. Toughing it out. One day at a time.

Dear Dr. L,

I want to take this time to clarify a few things that I feel are impairing the effectiveness of our doctor-patient relationship. I am completely open to the possibility that I may be misconstruing events and that you intended to convey a totally different sense of things. I would like to check if this is the case so that we can better work together to identify and manage my illnesses.

First off, you should know that I read the records I received to pass on to Dr. M, and I have them in my possession since the doctor was unable to receive me as a patient. This means that any references I make to my records are direct quotes, and not subjective memories or impressions.

I admit that I was greatly distraught upon review of my records, as I feel that there have been some serious oversights and miscommunications. (Also, I had allowed myself to raise my hopes in regards to seeing a pain specialist, so being denied that opportunity-- again-- really threw me into a state of heightened emotion.) In the "Rheumatologic Exam" section of each appointment, results for various examinations are listed as though the exams were performed at every appointment when this has not been the case. I recall only 3 appointments at most in the entire year that I have been seeing you that I have been touched or manipulated in some way for an exam; certainly not at every single appointment. It troublese me that at every appointment my joint and flexor tendon examinations have results reading "Normal exam", yet I was never examined. The trigger point examination notes diffuse trigger points throughout, but I am not re-examined for this (though it's true). Also, I noticed on my chart that I have an assessment of "fatigue with polyarthritis". Why has polyarthritis never been mentioned to me, and why are we not addressing it if it has been determined that this is an illness I'm dealing with? You have seen my health declining rapidly over the past year, yet it would appear that an apparent lead to managing my symptoms is being ignored. I need an explanation on this.

This brings me to my next, most sensitive, point. It is very clear to anyone in even basic consistent contact with me that my health has declined noticeably and rapidly within the past year. I know that we are taking steps to arrest this downward slide, yet I do not feel that I am being taken seriously. Perhaps the blame lies with me in not being clear enough about the severity, frequency, and variety of my symptoms, but the sense I get is that I'm being dismissed. It's like if I come in and say, "Oh, my sickness is at a level 7. It's debilitating, it's ruining my life," you take it as my sickness is really only at a level 4 and I'm not really that impaired. Remember the "FMS rating scale" that I brought in to show you how low my level of functioning was? I was trying to get you to understand how low my basic level of functioning had fallen, yet in that appointment's notes and almost every one following (with the exception of the last appt) it is noted that the "patient has no difficulties performing daily activities" despite my repeated testimonies to the contrary. I have tried to impress on you the extreme levels of pain that I am in by the hour, the minute, the day. I have been open about my excessive use of pain killers in the past, which was a desperate attempt to control and somehow evade this pain; to get back to a somewhat normal standard of living. I have, I thought, been very clear about the profuse, intense, and increasing amount of symptoms that I have to deal with, and the disability that has come as a result. I feel that not only is my sickness not being taken seriously enough, but I feel that the measures I am taking to cope are being dismissed as exaggerative.

A perfect example is my walker, the "Bling Chariot". (Or, as my brother calls it, "Walker, Texas Ranger". Or, as the lab techs call it, "Luke Skywalker".) I am not sure how you were unaware of my having it until now, as I've brought it to several appointments with me, and I have had it since last December. I bought it for the plane trip back to W to visit my folks. I knew that I did not have the physical endurance to both walk through the terminals and carry my bags without becoming so ill as to be rendered immobile. The cold of a W winter, and the fact that I was not yet on pain killers, forced me to use it for mobility's sake while I was there, as I could not walk normally due to pain. (This was back when the pain was localized mostly in my lower half.) When I got back home, I didn't use it for a while, feeling that I did not need it for basic mobility. After a time, I began using it when I knew that I would be standing or walking for a long period of time, and the pain from that would make moving very difficult. It was also handy for the fatigue that accompanied long periods of walking or standing. As time went on, my pain increased and my endurance decreased, and I began to use the walker more and more. My husband got me the walking stick that I think you remember so that I would not have to cart the walker around and endure the stigma of a young woman with a walker (no matter now neatly decorated), but that way I still had something to help with mobility issues due to pain and fatigue.

That worked well, until recently the pain in my hands became so great that using the stick is out of the question, and I have come to rely solely on the walker as my means of mobility aid. I explained to you at the last appointment that I use the walker to help with balance, to help me walk when pain affects my mobility, and to provide a resting place when fatigue/nausea/lightheadedness overwhelm me, which is frequently. My endurance is at the lowest it's been, and a simple grocery shopping trip of half an hour requires several rests, sometimes ending in my husband or a friend wheeling me around on the walker like it's a wheelchair because I am too sick or in too much pain to walk myself. That happens more often than I'd care for it to. I explained this to you, and in the notes for that appointment you wrote, "The patient requires walker for mobility states she has had this since 12/12, but this is the first that I have known about. Uses it for fatigue, pain, dizziness, tremors." I see that you listened to me, which is awesome, but I got the sense from the appointment (and from the notes, though I was emotional at the time of reading the notes and have since decided that I was putting the wrong meaning into that part) that you think I'm exaggerating. As you put it, you consider it to be "a crutch". (In reality, though, that's what it is, right? Because a crutch is a tool to help you be mobile when you would otherwise be immobile, so... in that sense, it is a crutch.) In short, I feel demeaned, not taken seriously.

I feel that way with my treatment as a whole, frankly. It appears to me as though you are taking me seriously, so you are not seriously pursuing the root issues of what is causing my pain and distress. I do feel a little more as though you appreciate what I'm telling you with the hand x-ray and ultrasound that was ordered, but this seems to me to be the first decisive action towards further exploration of my condition in a long while. I understand that the diagnostic process takes time, especially with the types of diseases that often mimic one another, but surely there must be a more aggressive manner to pursue diagnoses? I feel that the symptoms that I bring up are casually acknowledged and then dismissed. You sprang into action when I mentioned hand pain, but what about the insane spinal pain that I've been telling you about for several visits? That concerns me, but it is not even mentioned in the notes. The fact that I have recurrent fevers and sores of the scalp, mouth, and nose seem to be of little to no consequence to you. That you note that I "insist" that certain symptoms are related to autoimmune diseases makes me feel like I'm seen as some patient who decided she had something she found off of WebMD, not to be taken seriously. My general practitioner affirmed my inherent understanding of my body right away, and while she corrected me on some points, I still felt heard, understood, and that she was taking action on my behalf and had my well-being in mind.

I want you to take me seriously when I tell you that I am seriously impaired, that I live with devastating pain on a daily basis that is not adequately controlled by pain medication or the alternate coping methods I employ, that I am worsening over time, that I am alarmed by the rapidity and severity of my symptom development and I worry that I will be completely disabled in the near future, and that my life has literally been ruined by whatever is going on with me. I want you to understand that while it's easy for you to listen to my litany of problems and then wave me out the door, I have to live with every single one of them, every moment of every day. Nothing we have tried so far has made any of it go away. I want you to realize, truly realize, that I am becoming increasingly desperate and unsatisfied with my quality of life, and that depression is becoming a major problem for me.

While discussing this situation with my husband, he assured me that I am not a pansy, and that I'm not an exaggerator. If I say it hurts, that's because it hurts. I'm not the type to stub my toe or come down with a headache and need the rest of the day off. He reminded me that I am more in tune with my body than the average person, and I have a good grasp on what I need to do to make life work for me as well as possible. Regarding the walker, he stated that I know when and if I need the walker, and I use it. I don't rely on it unnecessarily. I trust his assessment of the situation, as he sees it with more clarity and less emotional involvement than I do, and he also sees the impact of my sickness from a different vantage point. He knows whether I actually need the walker or not. He sees me resting for an hour or more after doing a sinkful of dishes. He sees me curled up on the couch, day after day, because I am too overwhelmed with pain, nausea, and fatigue to be upright and mobile. He also played devil's advocate and made an extremely salient point, which will be my last.

My husband pointed out that when you see me, I am at my "best". I'm out and about, I'm dressed, I've got my makeup on, and I'm running on adrenaline to make it through being out of the house. You see me when I'm "okay". I'm sitting up, smiling, talking, cracking jokes... it seems that I'm doing okay. But you don't see the aftermath. You don't get to see that I barely make the drive back home and then crash on the couch for the rest of the day. You don't get to see the pain spike because I used my energy reserves for the day at that one appointment, or the fever that comes with overexertion, or the nausea and dizziness that keep me prone even if I weren't so bone-tired and wracked with pain. You don't see any of that. You see a relatively happy, healthy looking girl who wanders in with a walker. So I see why you might not be taking me as seriously as I wish that you would.

This isn't an ultimatum. This is a cry for help. I asked you in the past to help me, please help me, and you said that you would. So please... help me. I want my life back. I don't want to live this way. I hate it. I want to be a real person again, with a social life and my old hobbies and the ability to contribute to my household's budget. I want to find out what's going on, what's really going on, why I'm so sick, so I can do everything in my power to control it.

Please, correct me if I have gotten the wrong impression anywhere. I would like nothing more than for our working relationship to be strong and productive, and I apologize if I offended you in any way.

Sincerely,

Cassandra

Today was one of those "I feel like I'm doing life/chronic illness management wrong" days. Not that anything in particular triggered these thoughts, no instances of failure, but I just woke up kind of... off.

It's hard to fight the "voices" when they're indistinct and muddled. If I had a clear thought to combat, then I could make some headway. I do want to start counseling or therapy of some sort again, if I can find an inexpensive/free counselor. With all of the other medical bills I rack up, I feel bad tacking another one on that's not "essential".

I do know that I'm doing the best I can, though. I rely on pain killers to make it through the day, and that's okay. I have to be okay with that, because it is what it is. My not taking the pills won't help anything; I would just end up miserable and incapacitated with pain and aggravation of my other symptoms.

Speaking of aggravation of symptoms, I've been having a horrible time with nasal and mouth sores. The roof of my mouth has been tender, swollen, and ulcerated for almost a week now, and the sores have spread all over my tongue as well. I started taking a B vitamin complex supplement, for the folic acid, and I've also been rinsing with warm salt water. Those both seem to be helping a little, as the sores hurt less, even though they are more prolific. I am also sticking to "mushy" foods, easily chewable and nonabrasive.

I got some super awesome validation from a source outside my inner circle today. I was discussing a project for the upcoming DV vigil with one of the HJ's board members who is also on the Victims' Rights Committee with me, and he spoke about how he always enjoys working with me, and he is very impressed with the quality of work that I turn out. He also mentioned in the course of conversation that I do a lot of work for the committee and the HJ, regardless of my physical handicaps, which he admires and really appreciates. So it was just really good to hear praise from someone who isn't close to me, because it can sometimes seem like your loved ones are, like, paid to tell you nice things. You know what I mean?

I bought the fixins for fall/autumn decor for the house today while I was at the craft store getting supplies for the DV vigil's ribbon pins. (Everyone was so taken with the ones I made for the homicide vigil that I was forcefully nominated to do the ribbons for this vigil as well. I was flattered and excited, because I like doing crafty stuff and being able to contribute, especially when my contribution is so lauded.) C and I have had to hammer out compromises in the realm of decor, as he does not particularly care for seasonal decor of any kind and is pretty staunchly opposed to holiday-specific decor. I went on Pinterest and gathered several pictures of possible decor ideas, and he went through and pointed out the elements that he liked and disliked so that I could get an idea of what to steer clear of. Anyway, now that I have some supplies to round out what I already owned, I plan to purty up the place tomorrow, after cleaning up a bit. My house is never really dirty, but it is in need of a good tidying, especially the bathrooms. (Actually, I take it back. I'm sure that the house could use a good deep cleaning, because everything tends to get a nice thick layer of dust on it due to the fact that we live in a sandy desert.)

I really need to get with the program and buy a medic alert bracelet. Just due to the adrenal insufficiency, I should have one to alert anyone in the case of an emergency that I need a shot of cortisol to keep from going into adrenal shock. That wouldn't be good. Also, with all of the meds I'm taking it's a good idea to have that kind of thing easily accessible for doctors/EMTs to see. The risk of negative drug interactions is not a good risk to take. Ugh. Maybe I'll just bite the bullet and go do that right now, online...

As a parting thought, I'd like to share something that showed up in my news feed on facebook that correlates to my fight for optimism and self-acceptance today:

"Kick fibro in the ass! "What does that mean though?" Kicking fibro's ass just means hey, I take my meds, I do my treatments, if I can go for those walks I will, if I can't go for those walks I'll stay in and let my body rest, I won't PUSH myself beyond what I can't do. I'll try not to be so hard on myself, and I will do my best to release myself from the guilt other people put on me or the comparisons other people put on me as well because I don't deserve to be treated like anything less than a wonderful human being. So go kick fibo's ass, one flare at a time. YOU deserve it. It's not about being "physically strong" all the time. We understand how fibromyalgia makes us all feel, weak, tired, in pain, nauseated, shriveled up with sadness, yet we somehow prevail through it all. It's about giving yourself the credit you deserve for getting through such a difficult battle every day. It's about self-acceptance and empowerment. We all matter no matter what."