One more thing... Juneaux is pathetic. As soon as he has the halter on, he just flops over. He thinks he can't walk. He belly crawls from one place to another, if he moves at all, and he hauls himself up on furniture by his forelegs and claws. He thinks he can't jump, either. Try to stand him up and he just flops over. Just take a look and see...

video

Still working with depression. Where I'm at in the menstrual cycle isn't helping. I suspect that part of it is due to hormones. Regardless, today was an off day, mentally. Sort of.

I am damn tired. Worn down. Beat up. This effing pain just won't quit, won't go away, and it's driving me insane. I mean, I can take it, and have been taking it, but you can only take so much, you know? I always tell myself that tomorrow will be the day I snap, because tomorrow never comes, so I'll always make it through today. Heh.

Today, though, I was a bit rebellious. Maybe I just gave into the "eff it" mentality, and maybe I just wanted to stop trying so hard to be good when it seems to help so little, if at all. Yeah, I ate something that I am really not supposed to. I think I am allergic to every single ingredient. Regardless, it was yummy. If I hadn't eaten that small portion of the forbidden goodness, I was legitimately going to go out and buy a pizza and a donut today. Cheese and veggies, and Bavarian creme. It was all planned out. But I didn't. Because of the other (free) thing. And while I didn't have any gut reactions to it (yet), I did have a small amount of throat swelling and itchiness/rawness. It felt like I had a mild throat infection. Scary. So now that it's more than just my guts involved, I'll probably be better about being strict... which means not cheating once or twice a year. (Really? Can I get much better about avoiding allergens? C and I don't kiss after he's eaten allergic stuff, and we even use separate sponges for crying out loud!!)

While I was out running errands, I also picked up a pint of ice cream for myself (safe ice cream!) and a bunch of movies from the library. I've spent the rest of the day watching movies and eating the entire thing of ice cream. Guess who doesn't care? This girl!

C will be home soon. That means he can finish watching The Fantastic 4 with me. I love that movie, simply because Jessica Alba is so smoking hot. I could watch her all day. C and I are supposed to take a walk when he gets home, though... which will be good for me, pain or no. I need to work off that ice cream. Hah. (Oh yeah... and those 13 boxes of cookies.)

Quick note of happiness: When C and I went back to PetSmart to exchange harnesses for Juneaux, the cashier asked me about my walking stick, since he's only ever seen me with my walker before. He asked what disease I had (one of the first to assume I didn't have some sort of acute injury!), and when I gave him a brief explanation of fibromyalgia (and mentioned the connective tissue disease too, but no explanation) he looked me in the eyes and said, "So you're just really tough, then." We all laughed, but that comment lit a warm glow inside me. I really appreciated the acknowledgment of how hard it is to live in constant pain from someone who doesn't see anything but a passing glimpse, and yet still sees how hard it is. That was cool. And you know what the funny part is? I'll wager that he has no idea how much that passing comment meant to me, or that I'll remember it for a long time to come.
The pain always gets worse as the day goes on.

If I'm this messed up just upon waking, I can only guess the torment that is in store for me today.

Stupid "bald bastard" pharmacist and his refusal to fill my perfectly fillable prescription.

At least I'm not the only one that knows he's a jerk. I can't wait to get back to my regular pharmacy.
I'm just kind of thinking about life today... You know, 42. The meaning of life, the universe, and everything. Well, my life, anyway...

Don't get me wrong. I like my life. Love it, in fact. I've got a little house of my own, I've got a solid relationship with a wonderful man (though lord knows it took years for that to be able to happen!), my husband has a steady job that pays our bills (mostly... if I could keep out of the danged emergency room, that would help), I have health insurance, the medicines that I need to keep me alive (wish I were exaggerating on that one), I have a job that I love with an understanding boss, and we have food in the cupboards.

That being said, there's also a lot that sucks. I mean, it's hard. Really hard. Every day is a battle, and a fierce one. I'm very grateful for my antidepressant. Even just the low dose that I'm on has helped to smooth out my peaks and valleys so much... it's a relief. That was a hard, draining battle to be fighting all the time, and it was making my health struggles worse. Still, I must fend off the grasping tendrils of depression almost every single day. There are days when I wake up bright, cheery, and not an emotional cloud in sight, but... those are the invisible pink unicorns, pretty much. The purple elephants. Oh, sure, I don't spiral downward into the black gaping maw of that horrible pit that I grew to hate and yet know so well. Well, not often... but I still have those voices in my head that scream and holler at me my worthlessness, my failings, the futility of my fight or of pressing hard after anything good in my life... because really, I do have to chase the good things in my life. Nothing has fallen into my lap. I've worked damned hard for the good things I've got, and I refuse to let myself botch them up.

I've had a lot taken from me. My childhood, for one. Abuse, molestation, more abuse, dysfunctional family dynamics, playing the mother to everyone including my mother, more abuse... My family. Sibling bonds torn apart, taken from my mother on more than on occasion, divorces and betrayals... My sexual purity. I can't even be sure I was a virgin when C and I went on our special camping trip. I have no way of knowing, really, because so many of those years are lost to the blackness of my mind, willfully blocked to save my sanity. My mind. Poisoned genes passed down to me through generations of mental illness, a past that guarantees PTSD and depression, and I am helpless to resist the black tide that has washed over me for so long.

And just when I thought I had it all beat... just when I had climbed out of the fighting pit that I was thrown into at birth... I get sick. Real sick. Fuck my life. Now my livelihood is taken from me. Parts of my identity. Dreams. Plans. Hopes. Aspirations. Gone. All gone, in the span of a year. In place of my bright future, I am left holding ashes. The family that I thought I would have... gone. Two miscarriages and a diagnosis later, I am left wondering if I will ever hold the living embodiment of our union? I wanted to travel, to work for the forest service or a national park, to live in Alaska and hike Denali, to hike Mt. Whitney, to travel the floor of the Grand Canyon from rim to rim, to fly to distant lands and eat the local foods... I can't even eat out at restaurants. The past few days, I haven't been able to stand for longer than 5 minutes because of pain and fatigue. I want to see my friends, to go to movies and go out to eat and hang out at houses and go to the store or even just window shop, but I can't. Those basic, simple pleasures of life are denied me, and I weep.

I weep for the unfairness of it all. Haven't I suffered enough? Haven't I been through enough? When will it end? I was going to be a massage therapist, a mighty advocate, an outdoorsy photographer. I was going to be a survivalist, living off of the land and cutting my own wood. I was going to bear and raise children. I was going to visit every single state in the US, and other countries besides. I was going to go to Italy, France, Scotland, Ireland, England, Japan... And now? Now I lie on the couch, watching the clock and anxiously awaiting the time for my next pain pill.

So how, I ask you... how the hell am I still happy when I see my husband walk through the door at night? How am I still happy when I go to work and spend my hours tidying, filing, typing, creating, listening? How am I still happy when I create some especially tasty dish to savor, or even when I have a good cup of tea or a particularly perfect bowl of oatmeal? How am I still smiling when I see the pictures of my tall, beautiful sisters clad in pink and white and covered in flowers?

I don't know. I really don't. By all rights, and if I didn't have love to anchor me here, I would have killed myself by now. I am tempted to believe that the heart can only take so much suffering and pain before it breaks and all hope is lost, but... it seems that my heart has the capacity to absorb more suffering than I ever would have imagined. Maybe it's love that pours in to regenerate and heal the broken, bleeding parts of the heart so that it can go on? I know that my heart didn't start scabbing over until I went up north and found... love. Pure love, in the arms of a sister/mentor/friend, and in the warm circle of an honest, human, humble family. Things I had never experienced before. No, not even with C. We loved each other, true enough, and passionately. I would gladly have spent my whole life by his side, even then. But I was broken, so broken... even he, my life vest, couldn't reach the broken parts of me that needed healing. It had to be someone else, years later, when I was ready to face the truth of my brokenness.

Maybe that's why I can still smile. Because I've faced down my brokenness and I know that I cannot be conquered. All of the loss, all of the suffering, all of the agony... and I'm still here. Weeping, smiling, laid out on the couch like a corpse at a wake, but I'm here.

I guess you can cry and smile at the same time.
I realized very recently that it's been just about a year since I started manifesting with fibro pain and increased fatigue. And what a year it's been...

Ups and downs. Lots of both.

I'll admit, though, I am struggling since I got back from the wedding. A lot of pain, a painkiller that's pretty mild and only takes it down to "barely tolerable" (meaning I'm holding my breath, gritting my teeth, and sighing loudly a lot), and overwhelming nausea from a med that's supposed to help with the pain. I'm not sure which I'd rather have... the pain, or the nausea? I really don't appreciate having both, I'll tell you that!

Anyway, I've just been a bit down. Beaten down. The symptoms (the PAIN) are relentless, and I find myself rubbed raw and beginning to bleed. Even my guts are getting in on the act.

So yeah... maybe I'm a little depressed... but I know I'll survive. I mean, I've survived every day before, yeah? Even if it's flat on my back, I'll make it through the day. The trick is to not think about the rest of the day and the cumulative suffering, or else I'll just lose it.
The drive up was pretty uneventful. We didn't have to leave by any certain time, really, so we both packed the day of (because I was overworked and exhausted the day before), though I'd already stocked the fridge and pantry with my provisions for the week. C drove most of the way, though I took over for a few hours so he could nap. It was much different than the other times I've made that drive, where I've always been by myself and had to drive the whole way. Then again, I'm also in a different place physically than I was the last time I made that drive a year and a half ago.

Due to traffic and construction, we arrived a little later than we thought we would, but in enough time to surprise J as she and a couple of others were preparing to leave the house and stay in Lton for the weekend. While I wasn't able to sneak up on her like I would have wanted (she knew that a "surprise" would be coming up the driveway), she was definitely enthused and surprised. Funnily enough, so was K, because she had forgotten that we were coming that day!

C and I spent that evening recuperating some, as we were both exhausted and not feeling well after the long trip. He fell asleep super early and slept all night. It was difficult to get a good rest upstairs because it was so very hot (no AC, much to C's consternation lol), but we managed. The next day was Friday, and we headed into Otown to pick up my medical records, show C the town, and see a few old friends. We also had a lunch date set up with a couple of my friends, but I found some time in the morning to go out to the gardens and relieve a few strawberry plants of their burden. I didn't even get close to picking all of them, as they're not being picked on a regular basis and so are overloaded, but I got a sizable batch that I split into 3. One was for B, one for my friends M and S, and the other for J. We hung around in Otown for the afternoon then drove into Lton for J's rehearsal dinner. I'm glad that I wasn't able to make it for any of her bridal showers, as I admit that I would have had a hard time swallowing my jealousy. I know that the pre-festivities have no bearing on the wedding or marriage itself, but I still do feel gipped. Oh well. It is what it is, and I'm very happy regardless.

At the rehearsal dinner (which was beautifully set up, I might add!) C got fed with some good food and I munched on what I had brought with me. Before we even got around to the dinner, W and J led an entourage the block and a half from the church to their new little apartment that they're leasing. It's really cute! Small, but cute. They actually don't have much less square footage than we do, but the way ours is laid out makes it look much bigger.

The next day we headed into town to hang out with H, her husband S, and the two kids S and A. The kids were so excited at the rehearsal dinner when they found out that we would be coming to their house the next day! S was actually jumping up and down with excitement. It brought a warm glow to my heart, because it was me he was so excited to see. They call me Auntie Cassandra, which I think is awesome. Anyway, I made it into the gardens before we left again, so we went to H's house armed with a large tupperware container full of freshly picked, ginormous blueberries. We ended up eating most of them while we sat around looking at wedding pictures on my computer and telling funny stories. C and S seemed to hit it off quite well, and C was very impressed with the K's as a whole. He could tell that they are good people, and he said that if all Christians were like them then the world would have a LOT less problems, and the church too. I was invited to "girl's night" at the hotel in Lton, but it's 2 hours away from home and I knew that I'd need to be rested up for the next day, which was the day of the wedding.

We left the house on Sunday at a compromised time of 10 so that I could get to the hotel in time to finish getting ready with the girls of the wedding party. C took my laptop and a movie and sat in the hotel lobby (fully dressed for the wedding in a 3 piece suit!) to watch the movie. The timing was perfect, because I had just enough time to get myself ready before we headed over the park, and I also arrived with enough time to be partially through curling my hair when J showed up and I got to help her into her wedding dress. She was a truly beautiful bride, and I loved her hairdo with the fresh flowers that were slipped into it. She appeared to be much calmer than I was on my wedding day, but then again I have no way of knowing what kind of vibe I was giving off, so... Then again, she had everything organized and laid out, whereas I didn't as much.

When I was done getting ready I collected C and we headed over to the park to eat a light lunch. We wandered around sorta helping out, greeting old (for me) and new (for C) friends, and just observing. I was careful not to do too much because I was already not feeling too hot, and I knew that I'd need a lot of endurance to make it through the rest of the day. I got called over to join the family wedding photos at one point, which made me feel very special. I know that we consider each other to be sisters, but it's the public inclusions and acknowledgments that seem to be able to make or break the affiliation, especially in others' view. D was not there, obviously, and that was a sad thing, but W and J used his Bible with the well worn pages for their service, and there was a chair reserved for him with a single red rose placed in front of a sign that read, "In Loving Memory of D S".

C and I were in the third row, so we had a clear view of all the proceedings, and they were beautiful. I liked that the service was short, sweet, and to the point, but obviously very meaningful and thought out. You could just see the happiness radiating off of those two! It made me smile :)

After they ran back down the aisle as Mr. and Mrs. for a little quiet time, we wandered over to the reception area and sat at an empty table to see who would join us. Our table was sparsely populated until toward the end, when H and S joined us, though H was running around like a chicken with her head cut off. It only makes sense, as she was the wedding coordinator, and was probably doing the same at my wedding though I hardly noticed! The couple took pains to provide gluten free options for everything, so I ate very well and even had TWO pieces of cake! I had not had cake in so long, and it was a bit shocking to my stomach because of all the sugar, but it was totally worth it. I went through the receiving line and hugged the bride and groom and was once again hit with how grateful I was to be there. I would have been so very disappointed to have missed that.

There was only one hitch, which happened sometime between pieces of cake, and that was that a yellow jacket somehow crawled up my dress. The bees and yellow jackets are terrible up there this year, and as J's decorations were comprised primarily of flowers we had a lot of them hanging around the wedding and reception. We were leaving each other alone just fine until I felt some sort of a itching sensation to the right of my sacrum (lower back), so naturally I reached back and sort of felt around/scratched to get rid of the problem. That's when I felt the stab of pain, instantly realized that I had been bitten or stung by something, and crushed the area with the flat of my palm as hard as I could. I guess I got the thing, because I didn't get stung again. I did, however, scream very loudly, jump up and knock both my chair and my neighbor's water glass over, and shout some sort of expressive phrase like "good grief" or something. (I am soooooo glad that my brain's filter was firmly in place this weekend and I didn't drop a huge, loud F-bomb right in the middle of my sister's reception. Considering that 99.9% of the attendees were good, staunch conservative SDA's... that wouldn't have gone over so well.) H came to the rescue with a plaster of mud and wet paper towels, and that took the heat out of it for a while. One of the other guests picked some plantain that was growing at the park, and I chewed up the leaves and held the poultice on with a couple of bandaids overnight. The sting went away with no trouble, but I had a lot of itching and redness, even some swelling, from the adhesives on the bandaids. Oh well. It was the lesser of two evils at that point.

After the festivities had wound down, the marriage license was signed, and the garter and bouquet thrown, the guests formed a corridor for the couple to dash through to their getaway car while we showered them with dried lavender flowers. The park smelled great! Hehe.

C and I headed home and pretty much collapsed into bed. Well, I did at any rate... (Ok, maybe after having a little fun of our own...) I had to say my goodbyes at the reception, as that was the last we would see of anyone before we skipped town. The next morning C and I packed up the truck, tidied the house, and headed back home. That trip is a post in and of itself, so I'll save it for later. I will say that I am thrilled to have Juneaux back home with me, though! He seems to be adjusting well, though he hasn't been outside yet. That'll happen in a few days, after we get him a collar and tag. We wanted to make sure he'd come back, so we've been keeping him inside. I don't want any Milo and Otis/Homeward Bound stuff going on, with him trying to get back up north! This is home now.
It may be a while 'til I post. My laptop died this morning, and we be poor. Don't know when I'll get ahold of a new one, and it's kind of awkward to blog on C's computer. Like, it's not mine... I dunno. At any rate, I'll be back... sometime.


C and I have both seen this video and find it hilarious, which is why it was also funny the other day when I likened having fibro/connective tissue disease to a horribly slow murder with an extremely inefficient weapon.
Haven't had the gumption to blog lately. Too much happened, and the thought of trying to write it all down is overwhelming and exhausting. Just haven't had much of anything in me lately.

Wedding was great.

Trip was... eventful.

Juneaux is fine.

I am in pain.

My husband is wonderful... if a bit stubborn at times. :)

I am tired.
So I couldn't say anything here or on fb for fear of ruining the surprise, but C and I drove up to Id for J's wedding weekend! Yep. We are now firmly ensconced in the S's home, watching over it while they're all crammed into a hotel room together. I'll be doing some cramming of my own over the weekend, but it's nice to have a peaceful, quiet place to relax in. Although C did most of the driving, it was still a grueling trip, and neither of us are feeling very good right now.

C, J's mom, had told her this morning that she would have a surprise rolling in about noon, but she had no idea it would be us! Her delight and enthusiasm more than made up for the difficulty of the trip, and I for one am thrilled to be here. A HUGE thanks to my mother for supplying the gas money and making it possible!

It is strangely sad, though, to be here and know that D is dead. It casts a solemn pall over what would otherwise be a strictly joyful trip, but that's to be expected. I knew this would happen, and so did C.

Also, when I went outdoors and called Juneaux he appeared immediately and was incredibly happy to see me. He had no troubles remembering his mother at all! That made me happy. I missed my sweet baby boy.
Another rough few days. Pain has been quite bad, and the meds that I'm taking only take it back down to the "Okay, I guess I won't kill myself" level. There is no such thing as pain relief, only pain dampening.

I got turned down for my new pain killer prescription last night, after some crazy runaround with different pharmacies because the one didn't have enough to fill it, etc. It was some pharmacist that I didn't know who called me and told me they couldn't fill it, and the tone of his voice was... humiliating. Like I was hoarding the drugs to sell, or trying to get more than my fair share so I could get high or something.

So I went home and drank some rum, which served to make me just not really care about the pain or my sadness and frustration anymore. Today I'm nauseous (what's new?) and very tired, but I don't know if that's backlash from drinking or just normal fibro stuff?

I do like my rheumatologist. She takes me seriously and is genuinely trying to help me. She's switched my appointments from being every two months to every month, so we can more closely monitor my condition and adjust med dosages. Also, that way I will be less tempted to take more pain killers than I've been prescribed, which I'm totally guilty of doing. That's how I got into this whole mess with the hydrocodone. It's just that... when the meds you're taking aren't helping, it's so easy to double up the dose and get the relief that you are so desperate for. So anyway, I signed a contract with the rheum's office yesterday, and gave them urine for a drug test. I'm now subject to random drug tests if they want them, which is fine. I want to be, and mostly am, a responsible patient. I just don't want to live my life in a weepy, couch-ridden daze.

Anyway, I've got some stuff to do this morning despite my fatigue, so I'd better get to it. I'm waiting for a call back from the rheum's office as to what to do about this pain med situation. Again, she takes me seriously, so I know I can trust her to help me out. I'm really glad that I can trust my doctor. So many of the chronic illness survivors I know spend a lot of energy looking for a doc they can trust.
Thursday evening I took my friend to the doctor's appointment she'd gotten set up at the free clinic. We basically sat around in a (very) cold room for 2.5 hours, then were shuttled off to the crisis intervention clinic to sit for several more hours. She wasn't allowed to leave, because she's a suicide risk, so I left and brought some food back at one point. They "committed" her without consent, again, because of the suicide risk. So when I got home after 1 a.m. (the initial appointment was at 6:30 p.m., mind you), C laughed long and loud at the fact that I accidentally committed my friend. Oops. But she is getting her psych eval tomorrow, which will get her the help that she needs, so I have no qualms.

The cold room, the stress, and the late hour all hit me like a brick the next morning, Friday, which also happened to be the morning that I ran out of pain meds. Of course. I had an appointment with my GP who graciously gave me a stop-gap prescription for pain meds, but upon trying to fill them I found that the insurance regulations wouldn't let me. I had gone through the other meds too quickly, and they are a controlled substance. I went to the rheum's office in tears and pain, and they moved my appointment up 2 weeks which is great. They also suggested a way to possibly get my scripts filled, which I tried to no avail. Fortunately, I kept the pieces of paper and was able to get them filled elsewhere later that night.

First, though, I came home and collapsed tearfully into bed where C was lying. He held me as I sobbed my despair, pain, and frustration, suggesting that I take a hot bath to ease some of the pain. I took his advice, then took a several hour nap. A couple of hours later, we were able to get one of my scripts filled, and that's what's been keeping me sane. I'm still trying to break the pain cycle that lapse caused, but it's tough. I couldn't walk around the grocery store that night so I used the electric cart, which was an interesting, kinda fun experience. They're not terribly fast, but they corner pretty well.

Yesterday C bought me rum and coke, in the hopes that I wouldn't have to use as many pain pills if I were liquored up. It was a good idea... until I did some research and discovered that acetaminophen and alcohol is a big no-no. I'll have to wait until I've got a different sort of pain med to take advantage of boozing it up, or risk liver failure. Not a pleasant prospect. I hope I didn't hurt it too much with what I drank yesterday. It was only one glass, though, so I think I'll be ok.

Other than trying to beat back the pain (and it's a doozy), I've officially joined the guys in nerding out. M is DMing a campaign that I've rolled up a character for, and we had our first session last night, so I'm a DnD player now I guess. I never thought I'd "stoop so low", though I'm finding that it's actually a fun pastime.

I'm just tired. Tired of hurting so badly... and for no good reason. Almost every morning when the pain starts hammering at me really bad, I just kind of sit back and marvel in puzzled confusion at the phenomenon of seemingly causeless pain. I don't understand it. Why do I hurt all of the time? It's not fair, really. But, hey... it's my life right now. What else can I do but bear it and try to make the best of things?

I suppose I'm not in the most cheerful of places right now. I feel like I'm being ground down to a stump by this damn pain. C was really good to me on the day without meds, more than usual. (If that's possible.) When I was crying in his arms, I wailed to him to help me, please, help me. I know it bugs him that he can't do anything to help me, so he just kind of puts it out of his mind and doesn't worry about it, but that day he was more solicitous and affectionate than usual. It was very sweet, and I reveled in it. He also put a quick end to my death wishes, which is easy enough because I really do want to live. I just yearn for the utter peacefulness and desensitization that the grave promises. I'd settle for a coma, really. Anything to end this damned pain. When I sniffled to C that I was depressed, he agreed with me completely.

Don't misunderstand me. I'm not suicidal. I don't want to die. I just don't want to hurt anymore. But I love life, my life, far too much to follow the path of that thought. My hubby needs me. After all, I'm the only woman he's ever loved. :)


I came across this little video last night, and showed it to C when he got home. He laughed and said that it was "good lines". He's right. lol.

I also asked him a similar question-- have you ever loved anyone else? His answer was... no.

I am the only woman he has ever loved.

Stick that in your pipe and smoke it.
I'm lying here, in a world of hurt, contemplating tomorrow.

I don't understand why my pain has just been getting worse and worse, but I'm hopeful (and fearful) that tomorrow will hold answers for me. Well, truthfully, no matter what the tests say I will have answers. Either I have MS or I don't. Either it's lupus or it's not. Either they see something wrong with me or they don't. Either we know what's killing me slowly or we know to look somewhere else, to some other solution.

C seems pleased at my efforts to be healthy and live a full life in spite of the pain and sickness. We took the snake for a walk tonight, and we walked all the way down the block to the canal, then followed that down to the main road before we retraced our steps. I'm proud of myself. I've made it a goal to take a walk every other night, and C is supportive of that. I love taking walks with him, and there's no point in walking during the heat of the day anyway, so I may as well wait for him to get home before I go out.

I worked several hours today and accomplished a great deal, more than E thought I would. She had to go out and run some errands so I finished the tasks she needed done that day and just kept going with filing and other projects that have been lying around for a while. I've got more phone calls and stuff to make tomorrow, but the good news is that the board approved an hour increase for me, so I can work up to 8 hours a week now! That is, if I can physically handle it, of course. But I really want to try to maintain 8 hours a week. Not only can I use the money, but it is also good for my peace of mind and my sense of industry.

As much as I'm involved in the HJ these days, it came as a funny realization to me today that I really don't feel the need to attend the sexual assault support group for myself anymore. At least, not right now. I'm in a good place, I've got good coping mechanisms and healthy tools in my toolbox, and I'm in a pretty steady place in my life. In addition, most of my energy is focused on the fight for my physical health these days, and my emotional health is not the main priority for healing any longer. I'm sure I'll still pop in from time to time, and there may be a time when I need to go back in a more long-term fashion, but... I guess I've moved to a new place in my healing journey, one where I can give support as well as receive it. I am getting support from places other than group now, and it's enough for me.

It's funny... I was musing today that I have gained a lot from my battle with chronic illness. I've grown a lot as a person, my perspective on life has been refined and tempered, and I am much more intentional in my relationships and my lifestyle. My support network has been finely crystallized into a distinct entity, whereas before I just had... friends. I've learned a lot about boundaries and humility and accepting care from others. I've learned a lot about letting others care for me as a friend, and how to care for others in a truly open way. I've learned even more about taking care of myself in all aspects, and I've learned how to listen to myself. (Mostly.)

So no matter what answers (or lack thereof) tomorrow brings, it's just another step in this rich, tumultuous journey that I'm on. I'm grateful for it... but sometimes I wish it hurt less. In so many ways.

It's true.

I saw this picture and thought about where I was a year ago. I had moved in with C already, I was starting college for the first time, and I was beginning the descent into pain. I was already quite sick, as the first semester proved. If I ever start to think that I'm not a determined individual, I just remember math class and dragging myself there every day through a haze of sickness, extreme fatigue, and gut pain. (This was before the leg/widespread body pain became apparent.) I was also fighting with severe depression and dealing with a lot of junk being dredged up by leading the tween sexual assault survivor group. It brought up a lot of my own stuff to deal with, which was hard.

I believe it was about a year ago that C and I got engaged, as well. I'm going to go check on that real quick... Yes. We were planning the wedding, even if we weren't "officially" engaged yet (as in he hadn't technically proposed yet, but... whatever. If you decide that you're getting married, you're engaged. I don't care what the wedding magazines say.).

A year ago, I knew I'd be married, but I didn't ever envision being so sick. It never, ever crossed my mind that I'd have both a stick and a walker, and use them with regularity. I knew that C intended to buy a house, but it never really occurred to me what being mistress of my own little home would be like. (Probably because the first time I really ever lived in a house was with the S's.) I never, ever thought that I'd stop going to church.

I never pictured that I'd be so all-fired happy. I had no concept of the deep satisfaction that I would derive from loving, being loved, being a wife, being a friend, working, being a badass chronic illness fighter... I have never loved my life more. I also didn't picture the amount of work and personal growth that it would take to get here.

In regards to illness, I'm better in some ways now than I was a year ago, and worse in some ways. Obviously, the pain is much worse than it was, and it continues to develop with the passing of time. However, I don't struggle with gut pain nearly as much anymore, my bowels mostly move on their own these days, my fatigue levels have dropped considerably, and I've figured out a mostly digestible diet for myself. Also, the dizziness is not so much of a ever-present factor, though it does come and go.

So, yes. I wouldn't have pictured my life as being like this a year ago, but... I'm fine with that. My life is infinitely richer and more fulfilling than I could have possibly dreamed! And frankly, I'm grateful to finally have hit a "smooth" patch without trauma and drama. It's about time I got to enjoy some normalcy, I think.
I've found my tattoo. Well, the components for my tattoo that I've created in my mind, anyway.

This:


With the word "Warrior" underneath in a cool font... and the letter "I" being a spoon.

In just an hour and a half I begin my first bout of testing for the cause of these twitchies.

I'm a little nervous, I must confess, as C shared with me that the procedure is, well, painful. His mom went through it. How painful it is exactly, he couldn't say, because he's not the one that went through it, and he claims that it's possible that his mom was being a pansy. Problem is... I'm a pansy, too! lol

I figured it might be best not to take pain killers before the test, so that the readings will be accurate, but I was hurting enough that I needed to. The thing with the pain meds is that they don't get rid of the pain, which is highly annoying. They just take it down to (mostly) bearable levels, if I'm lucky. But my stomach hurts a lot with all of this acetaminophen I've been ingesting. I suppose it's a worthwhile tradeoff. Sorta.


Also...


I love the community humor that chronic illness patients have developed. I mean, really... if you can't laugh at this stuff, you'll end up crying about it. And I hate to be droning on about my pain and symptoms all of the time, but... you talk about what's familiar and constant, and this is my life now. C and I were joking about who was going to die first last night. He says that although women generally live longer, with all this stuff wrong with me I've probably lost about 5 years, so that puts us on even footing. He actually thinks he'll come out ahead by a year or two. Could be. I'd rather die first, so I don't have to fight through the grief of losing my mate.

I asked him yesterday about suicide, my suicide. He said that, if I succeeded he'd be very upset, and probably a little angry with me. If I didn't succeed, he'd be very upset and he'd have me committed so that I couldn't hurt myself again. I was feigning offense that he would lock me away and I wouldn't see him anymore, but he assured me that he'd come visit. He also told me that killing myself, or trying, would never ever be doing him a favor. It would never be a good thing for him. I smiled at the assurance that he values my presence in his life, and I assured him that although the thought comes up in moments of desperation, it's never a serious option for me. It's not.

In the depths of my emotional and mental agony and despair, I longed for rest, for a respite from the hurricane of dark forces that ripped through my soul. Now, in the grip of relentless pain, I long for rest and a respite from the endless grinding and battering of burning, choking torment. It's torture, but there is no inquisitioner and no answer that I could give to end the agony.

Despite all that, though... despite the darkness that still rises from time to time to swallow me whole... despite the flames of chronic illness that lap at my naked, defenseless body... there is a solid, shining light that forms a bridge above the darkness, above the flames... and I can crawl to safety. And if I don't have the strength to crawl, at least I can lie on its solid surface and know that the golden pathway remains and will remain. The bridge of light is the meaning and satisfaction that I have found in my life. It is made up of my husband, my work with the Healing Journey, my friends and support system, the simple pleasures of food and tea and good books, the security of my place within my family, and the warm glow of unconditional acceptance from those who have come to love me. It is a bridge that saves me, day after day... a platform to rest upon as I drag myself from the cold burning depths of despair and frustration.

As I contemplate this odd mix of pain and darkness and light and love that is my life, I find myself profoundly grateful and humbled. I have never before in my life had a hope like this to cling to, to save me... and I cherish it. The darkness before was always so chaotic, and I could see no respite but a rock or two to cling to in the midst of the storms. Never before have I had a way out.

I know the pain isn't going anywhere. When I first started getting sick, and for many months afterward, I held on to the hope that this was a passing thing... that it would peak and then recede. I know now, and have accepted, that the pain isn't going anywhere. This is my life now. I fight to diminish it, to overcome it, and to find treatments for what is wrong with me but... this is my future. I don't expect anything else. While that may be considered glum and defeatist by some, I see it as freeing. No longer expending my energy on false hopes, I can focus on walking my shining bridge and beating back the flames that threaten to consume me.

It's an exhausting battle. I won't lie. The darkness still wraps tendrils around me and whispers dark doubts in my mind. But I have something to hang on to now... something that will always pull me back out. And that's why suicide is never really an option.