So today is the day. I'm headed to the University to see the good ol' doctors and hopefully, hopefully get some answers, maybe move forward an iota in this journey. My friend drove me, and we've been having a grand old time. She's a pretty new friend, but we've bonded quickly and have a lot in common. I really enjoy spending time with her, and she doesn't mind driving me these long distances so it's a really good symbiotic relationship.

It has been so long since I've gotten out of the house and just had fun, but when I'm out on road trips with Cheryl we have fun! Granted, they're medical road trips, but who cares? We went and got pedicures last night after getting into town because I've needed one desperately for some time. The bottoms of my feet and my heels were dried, cracked, peeling and bleeding but I can't reach my feet to take care of them anymore. (I can't soak in the tub any longer either, because I can't get myself up and out; it's too painful and difficult.) I haven't been able to bend like that for some time, just because of the spine and ribcage and stuff, and I have more difficulty bending my knees now. I ask Corey to help me now and then, but he blows me off because he doesn't want to do it, like most of the things I ask him to do for me. Massages are the most frequent request, but he finds them boring and so it doesn't happen. I'm hoping that he can learn to grow and change with the situation and become more proactive, more helpful. When we talk sometimes he says that he doesn't know what to do to help with my pain or other troubles, but that's not the truth. He knows, because I tell him. I ask for things, I don't just assume that he knows what I need. He just… doesn't wanna do it.

Cheryl and I have been talking about a very wide range of things on this trip and I've gotten to vent about the hurt and frustration I'm feeling in this season of life. It's not just one thing, of course, but a whole kaleidoscope of minor and major stings and slashes and bruises. I'm just trying to make things better. I hope it works. The best thing about our conversations that range all over is that not only are we so much alike but she understands from the chronic illness standpoint as well. Her disease came out of a long remission about 4 or 5 years ago, so she's feeling the sting of losing the normalcy and routine of the life that you lived and maybe loved. I'm going on 3 years and I still have a hard time making heads or tails of it. Yes, Friko, there is more to me than illness, but I just live those parts. I don't need to blog about them because they don't cause me pain, I don't need to sort through the feelings. A lot of who I used to be and what I used to do is gone, though, and I'm trying to figure out what fits in the gap. It hit me like a brick last week to realize how dependent I've been forced to become and that just galls. I was such an independent woman, a "doer", a travel across the country by myself, backpacking, hiking, counseling and administrating, housekeeping, job holding person who could drive herself to the store if she needed to. I can't do any of that anymore. I can hardly cook for myself these days, me who used to cook for our family on a daily basis. I'm a damn good cook, but it's too painful and exhausting for me to pull it off any longer.

So all of that is tumbling around in my mind like a rock polisher hard at work as I face this appointment. I have no idea what to expect, but I know what I'm hoping for. If they can actually definitively tell me what disease I have then logically there will be a course of treatment that will help me to at least stabilize, but hopefully to become functional again. That is what I am looking forward to. I resent my dependence and so does Corey. He's resorted to mechanical functioning and nothing I do can bring him out of his shell. He won't even say "I love you" unless I say it first; it's just a response. He doesn't kiss me, I have to go up and kiss him. It's like he doesn't want to interact with me anymore beyond a superficial basis-- I kiss him and tell him I love him when he goes to work, I kiss him and tell him I'm glad he's home when he comes home (all true, by the way). We'll fix ourselves something to eat, watch a few episodes of whatever show we're watching together, take a walk for half an hour or so, and then he retreats to his man cave to play computer games and I do whatever it is I need to do (sleep, read, slowly accomplish some chores) until it's time to go to bed. He doesn't cuddle with me in bed anymore, either. Lately there's been a teeny bit more of that, but it's because I cuddle him, wrapping an arm around him or entwining our feet like we used to do…

I don't know if it's the truth, but I feel like the health and happiness of our marriage is intrinsically tied to the state of my health. If I can get a good diagnosis and course of treatment, I can get somewhat better. Then Corey won't be as stressed or freaked or whatever he is, and he'll return some closeness, maybe? Hopefully? I'm reminded of a time we were talking about something or other and he said, partially in jest I hope/think, "I don't want to deal with cripples," or some such. I just kind of laughed, patted him on the shoulder and told him, "Sweetie… you're married to one."

I tend to get my hopes too far up in the sky and then bemusedly wander around, dripping with my own blood, when those hopes fracture and come crashing down on me to crush and transfix me. It's kind of a weakness. But is a diagnosis of what is clearly a destructive disease really that big of a dream? I mean… shouldn't it just be kind of a realistic thing to expect from life? And so I welcome you to the times and trials of the chronic illness patient.

(If you want to hear a neat song about high hopes, check out Sinatra's song about high, apple pie in the sky hopes. It's adorable.)

I really need to have sex with my husband. Not just want, although that's definitely a factor, but need. The problem is… we're not exactly having sex these days, at least not on a regular basis.

It came up in a talk we had as we drove back from the pain doctor last week. I am regularly flirting with him, throwing out double entendres and dirty jokes, making sure to touch him and get Physical Touch in there, and I get chuckles out of him and sometimes a bit of reciprocating physical affection, but more often than not it's just a verbal acknowledgment of the joke and an implied rejection in the silence that follows. Sometimes I get an overt rejection, and rarely rarely rarely does he actually take me up on the offer.

I mean, I get why this is. His reasons are perfectly valid and acceptable, but that doesn't lessen the sting of rejection or the cumulative hunger and longing. It's stress, you see. Our life is super mega stressful right now because of the finances and my physical ailments, and it's been building and building and no matter what we do it just seems to keep piling up around us like a big, invisible grave and I just want to scream because it's just so hard. I feel like I can do anything, take on any challenge, with Drogo by my side, but the stress is eating away at him and burying him deep in soft, suffocating layers and I just don't know how much by my side he is anymore.

I'm a very sexual creature. I am, and I own that. (It's remarkable to be able to say that without shame; something I would never have been able to do a year or more ago!) It keeps me feeling emotionally connected, it relieves stress, it fights pain, and it regulates my mood and keeps me some above the incessant swirling blackness of depression. Being celibate on my terms is one thing, but this enforced dry spell? I'm not handling it well. He said that stress has killed his libido, and okay, that's valid. That's legitimate. But it hasn't killed mine, at least not entirely. Granted, I don't want to have sex as much as I did anymore. I just don't have the energy, I'm usually feeling crappy, and I just… don't. But I have never, ever turned him away when he makes advances. I know that if I give it a minute or two I'll get into it and want to proceed, and sure enough, that's what happens. It's just… you can only be turned down so often before it's just not even worth trying anymore.

I'm constantly flirting, trying to initiate… and now I understand the stories told by men with frigid wives, wives who have lost interest or gotten too busy and distracted with the family. I so get it now. The awful part? The awful part is that I know specifically several men and women who would jump into bed with me if I so much as gave half a consent. I can name them, count them on my fingers right now, but the only thing stopping me is loyalty and love to my husband. It just… it hurts, you know? I know it's not about me, but after a while you just kind of start to wonder, is it me? Do you even want to be in this marriage with me? Why am I so undesirable to you? How can I be such a hot commodity to everyone else, but you won't give me the time of day? And I can't… I can't do that anymore. So I guess I'm going to stop trying. What's the point? It only ever works when he feels in the mood anyway, so why bother? I'm so tired of getting turned down, turned away. Take your stress and leave me the hell alone.

…he doesn't even cuddle me anymore. The loving byplay of yesteryear is gone, and I am so achingly empty and alone. He knows how I feel-- I've not been secretive about this--but I suppose he feels as helpless as I do. He understands it, too. His comments and conversation on the topic makes that blatantly clear. But I just want to feel loved again… I know he loves me-- he says so. (Usually after I've said it first.) But I don't feel it. I feel like a nuisance, a burden, a more or less welcome roommate, an expensive pet maybe. No, he cuddles and caresses the cats more than he does me, so I don't even rank that high.

It hurts. It just hurts. And I don't know how to fix it except to fix myself and get better so there won't be any more crazy bills and not enough money in a paycheck for our basic necessities plus my medical needs and he won't withdraw every night into his man cave and while away the hours not thinking, not feeling, until he climbs into bed and falls asleep.

I know he loves me. But why can't he suck it up and show me? I want that more than anything in the world right now.

Update-- After posting this, I went ahead and succumbed to my grief and the body wracking sobs, though I tried to keep it mostly quiet. Somehow, Drogo has this freaky, uncanny talent of knowing 99% of the time when I'm crying and where I'm at, and today was no exception. I was just picking up my laptop again to edit the phrasing on some of the words (can't even remember now…) when he came into the room, laid down just behind me, and wrapped me up in a big, spooning embrace. That, of course, made me lose it even further, but I feel like I did a good job pretending that I was unaffected, even if he could completely see right through it. At first I thought that he was going to bed but it was much too early for that, so when I guessed/asked about it he answered wryly but truthfully.

As we lay there, ensconced in one another's arms, I found my courage and slowly spoke of most of what I'd written here, not even bothering to change the words. a.) I found them in the first place and I can re-use them if I so desire, b.) they applied so perfectly to the present situation.

Anyway, he vowed that he would be more affectionate with me, said that sometimes he forgets I need the touchy feelies so much. I really appreciated that (still do), and the conversation was quite productive. I feel much more loved, and in fact he answered one of my questions with a surprising yet pretty much protected wet boy. He retreats into his man cave and immerses himself in a fantasy world (whether it's games with the guys, anime, stumbling websites, etc.) partly because he just doesn't like seeing me sick all of the time. Who does? I reframed the question for myself, trying to imagine Drogo in my place and mine in his, and I can honestly say that I have zero confidence that I would not immediately do the same. I would hate to see Drogo sick day in and day out, being helpless to do a damn thing about it, and feeling like a big and clumsy oaf if I try to help him with day to day tasks. No, I completely understand why he does as he does, or at least well enough, but that doesn't lessen the sting or sort out the snarl of emotions.

I'm optimistic about the future. When he realizes there's a problem and says he's going to do something about it, he damn well does it. I don't expect to get more sex, and honestly this wasn't a ploy for more. If I can't get it without resorting to cheap parlor tricks and frosted glass bottles, then I can do without. I'm just really happy that he understands that this is a big deal for me and wants to make it better. I love that man. Oh, and he says that he loves me "lots and lots" :)

It's weird. I don't know exactly how to explain it, but I feel so completely lost right now. I'm all out of sorts… and I don't even know why.

I'm tired. I know I'm tired. But it's like I'm so tired that I don't want to sleep. And I'm hungry (I think), but I don't feel like eating.

Also, I'm worried about meds. The perennial, anxiety-inducing worry of mine. I have pain pills now, yes, but not enough to get me through to see the pain specialist, even if I take them only every 6 hours. Will the new rheumatologist see that I need continuous pain meds and give me a script? Will the insurance let me cash it in? Will I have to spend a few days here and there throughout the week with little to no meds at all in the hopes that the pain docs will write me a script at our initial consultation? I don't even know what to expect. I need consistency in this, and in switching my care from the less than mediocre, I feel as though I am throwing myself off a cliff with no idea what awaits me in the abyss.

I wish I could just worry about, you know, "normal" things. Like holding down a job. Pursuing a career. Going to school. Planning a family. Taking care of my house. Saving up for vacations. Enjoying hobbies. But it seems as though my entire life, every minute of every day, is dominated by the draining, overshadowing worry of, "What if, by taking this pill to relieve my suffering now, I am dooming myself to even greater suffering in the future?" I am drained. I am tired. I am tired of worrying about how I'm going to survive. So very, very tired. I wish I had doctors that would champion for me, that would worry about this for me, or that would make the situation so that I would not have to worry.

I'm so tired… so very, very tired of being sick. Of being in pain. I'm all out of sorts. Now that the initial surge of joy from getting my pain killers has passed, the waves have receded and left me once more run aground on the rocky shoals of "what if".

Do you know what it's like to live in fear that the economy will tank, or there will be some national disaster or something because then you will not be able to get the meds that are keeping you alive, that are making life even semi-bearable? I literally live in terror of that thought.

I suspect that it's the looming closeness of the appointment with the new rheum that has got me all worked up. The unknown, it mocks me. Can this doctor help me? Will we begin finding answers at last? What is wrong with my body? Is it treatable? Is it curable? Is it fatal? Is there irreparable damage? Will you take me seriously? Will you help me, and not expect me to do your job for you? I'm so scared… scared of another dead end and even further declines in my health. How much further can I sink? Where will I go? How sick do you have to get before your body or your mind (or both) finally says "Enough!" and just stops? How miserable does life have to get before you just kind of snap and try to end your own suffering? So far I've managed to resist the temptation. It's been hard. Very, very hard. I have stayed, though, because of those who love me and want me to stay.

I don't think they realize what a sacrifice I am making for them by staying, by living in this body and abiding with this pain and sickness day after day. Every day that I am alive is a monumental declaration, a neon sign that says, "I care about you more than I care about not hurting anymore. I will continue to hurt so that you do not have to feel the agony of losing someone dear. I languish for you, dear heart, for you mean the world to me. Your happiness is more important than my own. I hope you know that." I would dearly love to put an end to my pain. Oh, yes. I would. But I care too much. I love too much. I don't have it in me to hurt the ones I love like that. So… I try to find the happiness here, with them. I try to find the smiles and the joy and the laughter. I try to find what makes it worthwhile staying here… and I have. In many ways, I have.

I do like living. I would like it better if I could actually live, I think, but it's pleasant enough. At times. It would probably be even more pleasant if I could at least have a piece of pie once in a while.

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.

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

You know what I've realized? My diet is pretty pathetic.

I mean, it's not that I eat unhealthfully, per se, but I know that it's pretty unbalanced. How's that, you ask? Well, I pretty much just eat the same things all the time right now, and even though they're "good" things, constant repetition is not exactly your friend when it comes to meeting nutritional requirements.

It started when I cut out gluten and soy from my diet. That helped some, but I was still in a lot of agony a lot of the time... plus I didn't know what to eat. In addition to that, I was at a school where meals were prepared en masse and served up at certain times. I had very little control over my food, but I managed to scrape through... somehow.

Then I was diagnosed with a bunch of food allergies. What the heck do I eat now?!
As I fumbled my way into my new lifestyle, I had friends with experience in the allergy realm helping to guide me.

Then I moved in with the S's, and the education began. I learned to cook-- I mean really cook-- and how to feed a family. I don't think I've ever eaten so well as that year and a half that I was with the S's. It seems to me that having other people around that eat similarly to me, or that can at least help guide me (a.k.a. kick me in the butt to create real food) is a key part of my adherence to actual meal creation. Once it was just me, well... It's hard to cook for one person, especially when you're living with non-allergy people, and there's no room for you to stockpile ingredients or freezers full of pre-cooked foods. That's been the situation so far. I've moved into previously established non-allergy households, and carved myself a little niche, but I've never really had my own space to stockpile what I needed.

Once S moved out, that changed some, but I've become so sick that food doesn't even really hold any appeal for my any longer. I get hungry, sure, but that's the only reason I eat. Cooking is not enjoyable for me. It's a chore.

No, I take that back. I do enjoy cooking, but I'm usually nauseous or just plain sick while doing so, and the energy it takes just doesn't seem worth the outcome.

Also, I went through that phase where my guts were rejecting anything "heavy" or remotely resembling protein, so I've pretty much been on a tweaked version of the BRATY diet for the last three months or so.

I don't even have to take a list to the store with me anymore, a remarkable feat for my foggy self, because I know exactly what I need and in what amounts to make it through an average week. Some weeks I find myself actually hungry, and I eat more, but some weeks I find that I'm sicker than usual and I hardly eat at all. So I may run out, or I may have excess... regardless, the amounts usually don't vary.

I get 5 apples, a bunch of bananas (although there was a few weeks where I was just done with bananas), 4-5 sweet potatoes, 2-3 broccoli crowns, a head of cauliflower for baking, and 3 zucchini or yellow squash. If I need onions, I'll pick up a bag, and that lasts me for weeks, depending on what whims of cooking I succumb to. Sometimes I'll splurge on blackberries if they've got them. I've taken to keeping frozen fish fillets on hand for broiling, and sometimes chicken, but usually not. Honey and peppermint tea are kept replenished at all times, and if I have the money I get cashew butter from a store in the Foothills. Of course I need plain rice cakes to put it on, and a few bags of rice/root chips for easy "I need food NOW" moments, or when I need to take food to class with me. (Chips and an apple are easily portable and not disruptive.) At least one jar of unsweetened applesauce is a necessity, and 3 cans each of sliced peaches and pears in fruit juice. I get a bag of Udi's GF granola when I can, but I also found a new GF cereal that I like, which is handy for the mornings when I'm super nauseous but I have to eat something. Some sort of GF hot cereal, be it rice grits or Mighty Tasty Hot Cereal, and rice milk, original and enriched, if I'm running low on either of those things. Last but not least, one large container of Chobani vanilla yogurt, which I sweeten with agave nectar, and sometimes a medium container of the vanilla chocolate chunk if I'm feeling splurgey.

I already have a stockpile of rice at home, so I never need to buy that. I have a can of coconut milk on hand, should I ever get around to making corn chowder. Sometimes I'll pick up GF pasta to use in soups, but I have a bunch of that in the cupboard already.

That's it. That's what I eat these days. And it hasn't really bothered me until now, because I have this tendency to get into food ruts, I guess you could call it. I latch on to one thing in particular and eat it again and again until I'm tired of it. When I was a teen, it was toast with peanut butter, and baby spinach leaves with Italian dressing. Not at the same time, 'cause that's gross, but those were my go-to's. For a while it was boiled red potatoes with salt. When I was depressed, it would be a large container of Arizona green tea and a box of Ritz crackers.

If you ask the S's what "my food" was, they would all invariably answer "rice cakes with peanut butter and fruit". That was my thing, without fail. I finally got sick of peanut butter, and I couldn't stand the thought of rice cakes with nut butter and fruit for a while, but I'm kind of over that now. I think right now my thing is very well baked sweet potatoes, plain. Super yum. The only problem is that it takes time to bake a sweet potato, so you kinda gotta think ahead... A few months ago, I was obsessed with quesadillas for about three weeks.

But I need balance. I need more "real" foods. I just wish that I didn't have to be the one to make them :) I wish that I could just pay someone to cook for me so I can heal. (Although my guts have healed up beautifully, and I've seen the pictures to prove it!)

Anyway, I found this website/blog called 20somethingallergies, and the lady totally deals with a TON of food allergies, and it's all about eating well and real and right so that your body can heal itself. I'm all for that, but I get easily overwhelmed, and often feel judged and very defensive, even if nobody's saying anything. She straight out said on her site that there's no judging, that everyone is at a different place on separate journeys, and that's fine. I love that outlook. So I signed up for the newsletter, "Baby Steps", because that's what I need. Baby steps. One little change at a time. Maybe starting with cooking a "real" meal at least twice a week... and making big batches to freeze the rest for another time.

Drat. Now I'm hungry... and none of my sweet potatoes are baked up. I guess that means cereal... since I ate my salmon and broccoli earlier, and I have no rice cooked, either. Plus it's Grocery Day (um, night? We go when C gets home from work), so I'm running low on supplies. Maybe I'll be able to drag myself out of bed long enough to make that corn chowder today? That'd be nice. I'm going to try subbing turnips for the potatoes in that soup. Though mashed turnips are NOT the same as mashed potatoes, I think that in soups they swap out pretty well.

I came to a decision this morning.

Sure, it's fast, but I'm a pretty fast decision maker as a generality. I like things to happen now!

Anyway, I may go into this more later (I'm hurtin' right now, and not really in zee blogging mood), but I have decided that I will, in fact, postpone the massage therapy program for a year.

I'm postponing, not quitting. And it's a mature, thought-out decision, not a failure.

I just don't want to make a bunch of progress towards getting my health straightened back out and then go into a big ol' relapse because I pushed it too hard, too soon. I'm trying to look more at the long-term, and I think that this is the best decision I can make for myself right now.

I talked to C this morning about my thoughts last night, and the possible options, and all that stuff. He's behind me no matter what I choose, but the big epiphany for me was realizing that even if I'm "just" a housewife, he's fine with that. I have the freedom to choose what's best for me, and he's okay with whatever I decide. That is very freeing. To know that he will neither think less of me nor resent me for not "pitching in"... that allows me to make a decision based on what is really the best, rather than a decision motivated by the fear of rejection or other emotions.

Also... this means I can go to J's wedding! I would be lying if I didn't say that this was a slight motivating factor in my plans... But now we can combine the "let's go get my cat and the rest of my stuff" trip with J's wedding, so that's perfect. I'm starting to save up already.

I have other things I can focus on to keep me occupied while I really work on getting myself to a healthy place. It reminds me of what I went through in Id with the S's... I kinda dinked around and kept myself occupied with work of various sorts while I put a lot of focused energy into healing emotionally and mentally from the past abuse. Now that I've advanced much further emotionally, it's time to focus on advancing physically.

Honestly, I do feel relieved having come to an actual decision. This question of "but can you do the massage program?" has been brought up to me many times through the past few months by many different people. I brushed them off as party poopers, determined to charge headfirst into the challenge and prove myself a Mighty Fibromyalgia Warrior. However... I'm thinking at this point that maybe discretion is the better part of valor. I'm still a Warrior... but taking a different tack.

The best part? I feel good about this decision. I believe I'm doing the right thing, and I feel peaceful and settled. I can see that my reasons are good ones, and that I am doing this for good reasons, so I am not afraid. (Much.) Also? It's my life, and it doesn't matter if anyone else agrees or disagrees, frankly. As long as I (and C, since he has a stake in this now) am okay with it and believe I'm on the right path, well... that's what really matters.

Okay, so funny thing about how plans work out... they sometimes don't.

I went to bed all early and stuff... but I can't stay asleep. I'm waking up every hour or so, and now I'm just not tired anymore. (It could be the pain...? But it's not that bad! But bad enough to where I can't sleep in certain positions... I dunno. Whatevs. I took a tramadol and hopefully that will help me knock back out. Gotta do what you gotta do.)

Anyway, as I was drifting off the first, second, and third times, I was thinking about a few things... one of them being how my friend H encouraged me in my writing today. She sent me a message that went thusly:

"So for the whole month of February I've been trying to write one stinkin page on my courtship website and have been having the hardest time doing a page about the Proverbs 31 woman. I thought to myself, I bet I could ask C what she would write and she could come up with a really good intro in like two seconds. Just thinking about talking to you or asking for your help INSPIRED me! Seriously. 

I just finished reading this blog post (SUPER GOOD BLOGGER!) and I just HAD to tell you that you REALLY have a gift for writing. With your fibro thing going on and having low energy and all, you can really make an impact on this world through writing. That IS your gift. I like following your blog - largely because I care about you, largely because it educates me in my pursuit to be a good counselor, but another large factor is that it's just well written!"

Yes, well... clearly, it meant a lot to me. A lot. (And I hope you don't mind my sharing it, H!) And the funny thing is that I've been thinking lately about how I can make a contribution to the world now that I'm so "diminished" in other ways... It's like, "Okay, my definition of productivity has totally been turned on its head. How can I still be productive without judging myself on what I accomplish on a daily basis?" Writing could be it. I don't know what that will look like, exactly, but I feel that my feet are set on that path, and I'm slowly but surely walking toward something. I've felt that way for a little while now, and it's kinda exciting. Hard, 'cause you know me and waiting for stuff, but exciting.

That led me to begin thinking about other ways I can reach out and make a difference (while making a living), and the idea for an Etsy store came to me while I was drifting.

Okay, related side note: S has found a place to live and will be moving out within the next few weeks. That means that we'll have a spare bedroom, and C said that I can have it to move all of my crafty stuff (and wedding stuff) into! That means that I'll actually get to set up my easel! So I was thinking about how, once I have a space to work in, I can start making stuff, and how therapeutic it was for me to make that spoon last week...

And that led me to thinking about creating an Etsy store that specializes in survivor awareness jewelry, keychains, bookmarks, and art. Survivors of chronic illnesses, survivors of abuse, invisible illnesses... Like, I could have a whole "line" of stuff just for and about spoonies, featuring and made of spoons, and I could even make more of those "inspirational spoons" and feature them as gifts for the spoonies in people's lives... and I could have another line of stuff related to abuse survivors... and I could also put up the art that I create in various mediums. I'm thinking of a name something along the lines of The Art of Survival, or something like that. While the majority of profits would go towards defraying my medical bills (I really want to help R out on that one!), 10% of any profits would go toward various organizations that promote awareness of and healing from chronic illnesses and abuse.

While I don't have the resources to invest in jewelry and keychain making materials, I can definitely pick up cheap, older jewelry from thrift stores and take it apart to reassemble the parts into what I desire. As far as bookmarks and art goes, well, I'm always seeing things at Goodwill and the dollar store that I'm like, "Oooh, you know what I could make out of that?"

C says that, if I think I can do it, go for it. I'm thinking that I'll wait until after the wedding to even try thinking of it. I may put it off until this summer, even, when I don't have classes. We'll see. Definitely not until after the wedding, though! I think it would be fun to try to pursue this, even if it doesn't pan out like I'd hope that it would. (Hoping to become somewhat self-sufficient, income wise!)

And for now, I'll be patient and see where my writing takes me. I feel like I can't really contribute much in the way of fibromyalgia awareness or anything until I get mine under control, you know? My diagnosis is so recent and my symptoms so unpredictable that I feel like the only thing I really understand is the "freak out" stage... and I don't even have the answers for that yet!! lol

We'll see. We'll see. For now, it's enough to just dream...

So I had my first real conversation with my real dad today.

Wowza.

I can't even begin to process through it all right now, because it's a lot, and there are a ton of attendant emotions, but I can say a few things right now...

1. He and C (his wife) aren't going to be able to come to the wedding. I cried after I got off the phone, because I'm super disappointed. What is touching, though, is that they tried everything they could to be able to work it so they could come, but finances are just too constraining right now. Mer :( It hit me hard, because in the past 3 days I've heard that both of my best friends are not able to come, C and D aren't able to come (because of D's cancer) so I've lost a set of parents, and now T and C can't come. J and K are thinking they'll be able to come but it's still not set in stone and if they don't make it down then H won't be able to swing it financially on her own, so I'll lose my wedding coordinator. Good Lord. I was crying because not only am I sad about T and C not coming, but it feels like all the people I care about just aren't able to be there-- is anyone going to be able to come? Is there a point in having a ceremony at all?! *Sigh* I'll get past this, I know I'm just grieving, and it'll be okay.

2. We are freakily similar in little, odd ways... and some bigger ways. Even if we didn't look alike, which we do, I would not question his paternity after this convo.

3. It was really good. I just... yeah. A ton of emotions. I can't even begin to sort through them right now. But I'm just really happy. I was really apprehensive, unsure of what to expect, but I like him. I really do. He's good people :) And I think that we can definitely have a good friendship from here on out.

4. I was really touched that he would make the move to contact me, to own up to his fear and overcome it for the sake of building a relationship. For a long time I've questioned if he cared at all, but I know now that he does... not only because this was a huge step for him, but also because he choked up and even cried several times during the conversation, as did I. Like... I just really felt like he cared about me, and that in and of itself is enough to bring a lump to my throat and tears to my eyes. I didn't realize that there was a hole inside of me where a father's care should be, and that I was missing it or that it would mean anything to me to know that he cares, but... I dunno. It just twists something inside me that feels soft and a little bit sore... like a pulled muscle, almost, but on an emotional level. I didn't know that it was there until it got tweaked. But it feels good. It feels really good. And strange... but good. I know that R cares and loves me as his own, but something is different, knowing that it's the person who contributed to my creation, you know? Sure, R chose our family, but T made me!

5. I gave him my blog link... so he might be reading this now. Hi, dad! (Hah! Feels weird to type that! lol) Smile-- you're on candid camera ;)

6. He's funny. I genuinely like the guy. Even if he weren't related to me, I would totally choose him as a friend. He kind of defers the idea, but I think he's good people. I'm looking forward to getting to know him and C better. And I really want to go visit them sometime in the near future, definitely within the next 5 years at most. I wasn't sure about visiting him back when I was all uber Christian, because I knew that our lifestyles totally wouldn't mesh and I wasn't sure how uncomfortable and awkward it would be, but now that I'm out of my Judgy McJudgerson phase I think that it'll be fine. Maybe I'll make a visit out to see him one of the Adventures that C promised to take me on! :)

So, yeah. T and I are gonna get to know each other, baby steps at a time. I'm genuinely excited about this, though I know it's gonna bring up a ton of stuff for me to work through, and it's not all going to be pleasant. I am sure, though, that once the dust settles, I will be so much the healthier for it.

And that, my friends, is all. I have to take a test for my online class before other stuff happens... and if this past week is any indicator, I need to be on my toes.

Funny thing-- I decided to try pork, since I'm already apostatized and all, right?

Yeah, well, it doesn't sit too well with me. Bacon, either... though I love bacon so much more...

But really... It pretty much just makes me sick.

Touche, Jesus. Touche.

On another note, the meds are still kicking my butt, just when I thought they weren't...

Went to bed a little early, but I slept restlessly and woke at 5 a.m., unable to sleep again. Stupid gastrointestinal problems. (This was unrelated to my porcine adventures.) So I had some quality time with my colon, and was finally able to sleep again an hour later. (Interesting note-- this new med has a side effect of constipation. I was already struggling with that! So now it's so much worse... Meaning that I have to go the little old lady route and start taking Metamucil or something.)

After I fell asleep, I proceeded to sleep through my alarms, through my class, and through C getting up to get ready for work. I was out, man. You couldn't have pried me out of bed with a jackhammer. Okay, maybe with a jackhammer. But very little else!

I was able to get out and take a mile and a half walk yesterday, despite having some waves of dizziness and nausea, and I hadn't had the overwhelming urge to sleep in the middle of the day, or those crippling yawns, so I thought I was good, yeah?

Ah, today proved me wrong, on so many fronts. Still, it's not as terrible as it was when I first got on this med. It's getting better. And the joint pain seems to be receding, though I'm cautious of proclaiming myself whole too soon.

Anyway, I had some valuable time for introspection and Should battling because, yes, I felt guilty and lazy for missing class and for not being "okay" and for falling down on the job.

Yo, girl-- you've got a lot on your plate right now. No wonder you're stressed! It's okay. And it's okay to not be okay for a while. You're getting there, a little bit at a time. Now chill, okay? You're doing your best.

Damn straight I am!

Anyway, I used the rest of the afternoon pretty productively, I'd say... I went to my doctor and got her to sign off on some papers I need for the massage program, I got two vaccines, a urine drug test, some blood drawn for proof of two other vaccines, and I located the building for my TB test.

After that, I went on to get 102% on my A&P test that covered bone and muscle structures.

So, despite my "shortcomings" of the morning, I did pretty good today. Oh, and I did dishes and made the bed. And I ate. Twice. (Though this last one was a mistake... ate the pork. Bad idea.)

I'm working on the math that I missed this morning, and soon C will be home from work. We're going to discuss vaccines and our future children-- fun, fun!

Also, exciting developments on the home front! According to C's calculations, we should be ready to start looking for a house about the time I come back from vacation! :D

(WooHOO! I got 100% on my math homework!)

Now people can donate to the wedding fund, easy-peasy. :)