Log in

Nov. 30th, 2015 | 07:06 pm

Art of Crochet is a collection of crochet couture patterns that will knock your socks right off
(and give you the chance to stitch them back on again).

Sexy patterns with instructions for sizes 0-26 and full-color photography set in fabulous downtown Chicago, this book is visually lush and fashion forward. Detailed instructions remove all guesswork and contrasting examples encourage the designer in you.

This website was designed to spoil you, and change how patterns are published.
  • The Pattern Generator takes your measurements and turns them into patterns tailored exactly to you -- with no extra numbers to circle or row counts to fiddle with.

  • Video Stitch Guides for every single stitch used in the patterns.

  • Photo Gallery with hundreds of extra photos, so you can see the exact fit and drape (as well as outtakes and bloopers to tickle your funny bone).

Link | Leave a comment {262} | Share

Aug. 26th, 2014 | 03:18 pm

I haven't written here in a long time.

So long, that this is almost like a secret place again.

I want to say to her so many things. But love catches our voices, doesn't it?

I want to say - but you weren't there for me. You abandoned me, right when I needed you like you need me right now. You turned your back. And that other friend you decided was a better option - well, we both know why she's not there for you, and I am.

It's not that I do not want to help you. I want to save you.

But I lost everything when I needed saving, because I sunk. My whole world crashed at once, and I'm a really good swimmer but I still ended up washed up on the beach, face in the sand.

I just needed one person, just one. So it's not just you who turned away, but you're the only one I still care about.

I want to say to you - if you had just jumped on my magic carpet none of this would've happened to either of us. I want to shake you and shake you because it's true. What was lost, for reasons that only cut and cut again... well, darlin, I did it all. I climbed up and out and did it all, without you. And you would reel with envy if you knew the whole story, the adventures, the wonders, the freaks. But it could've happened differently, and it could have been our story.

And here we are now - old. And you need me like I needed you. And I'll be there. Because I love you. I want a pure heart in this. I want to purge those remaining bits of resentment and hurt. I want to hold your hand without memory of mine being empty.

I am seeking a peace, for myself, for us. I don't want to trip you up right now, or ever. And I want you to lean as much as you need. I guess that means I have to let myself grieve for what never was, and just get over it. It hurt so much I locked it up and stuffed it down. But it found its way out. There's no way I could tell you any of this. You are too fragile right now. And there won't be a point once these moments have passed and you are in a better place.

But I wonder if it even crosses your mind, and that's the part that hurts today, the new wound. Do you even realize what I'm doing, and remembering that you didn't.

Link | Leave a comment {1} | Share

Nov. 4th, 2013 | 03:27 pm

Good news for a change!

My new rheumy supports my need and desire to be treated with rituximab infusions. Additionally, she did a complete panel of blood tests (SEVEN vials) and is evaluating my overall immune system situation. I presented with actual joint swelling, too, which normally mysteriously vanishes when I have a rheumy appointment. The doc wants an MRI of my ankles before she'll call it RA. She also heard a friction rub in my heart.

It may seem bizarro, and it does to me, to be happy that I have signs of active, and multiple, and organ-threatening diseases, but getting the right treatment paid for by insurance all depends on a fairly arbitrary rubric and now I finally have enough boxes checked off. Yes, I am walking like a gimp because any pressure on my heels causes my ankles to sing and I've had persistent (and getting worse) chest pains with each prednisone step-down.

So pred was masking all this stuff, and now it's not, and the treatment for the sum total is not steroids, it's a biologic. And even though it is off-label and in trials, rituximab has already become a doctor-preferred standard when it comes to serious forms of Grave's disease... because it is *that* successful.

I could see remission as early as January.

I'll then have a significantly hindered immune system. But, if it works, I won't have to worry about waking up blind and all these surgeries won't be for nothing.

Now I just have to be chill until the 21st (next eye surgery). Then all the docs will email conference, and put the next part of the plan into action.

Link | Leave a comment {1} | Share

Oct. 27th, 2013 | 11:54 am

I'm in a foul mood. I've been generally irritated since my last eye surgery making my vision worse (although it is a process, and the surgery was a success for its intended purpose).

But part of my crankiness has been brewing because...

well, I disconnected from nearly everyone in my life when I was 25, and started over and found new relationships. Then I got reconnected. And it seems that all at once, a bunch of those people started acting in the exact ways that put me off to begin with.

It's so odd to love someone but struggle with liking them, and wondering what to do about that. Do I change my attitude, do I write a person off, do I try to communicate with them about an issue?

Farts Rainbows is a perfect example - she actually farted a rainbow (or came as close to that as is possible without a colonic cleanse and bright lighting). When I read her post I didn't know whether to laugh or cry, considering that's been my internal snarky nickname for her for years. I thought (hoped) she had grown out of her presuppositions, her biased hierarchy, her...


I've been trying to gather the pieces and parts for an internet experiment in non-linear interactive literature. I keep hitting a wall because I can't get out of the darkness. I'm disappointed in people, the people in my life, and I want the project to be more than merely exposing the shitty ways in which people are willing to treat each other.

As a teen, I thought I'd grow up and eventually write horror fiction. I could house my project in that construct, I suppose. My hesitation is that I do not want the message lost in the metaphor.

Link | Leave a comment {4} | Share

Oct. 2nd, 2013 | 11:49 am

Next surgery is November 14th. It's been moved up because the previous surgery caused changes in position that have severely irritated the muscles that were not worked on. The doctor called the vessels in my eyes "angry".

I see neuro-ophthalmology on Friday and get more news about rituximab.

But I'm sorta worried about that exam, which is mostly of the optic nerves. I have gotten worse. At this point, my option would be IV steroids and a hospital stay until stabilized.

I have to call my mom. I can't just ignore her. And I don't know what is best. If I told her "it's over" she'd respect it without saying anything but goodbye. Maybe knowing that is part of why it all sucks. But anything more and I'd have to deal with her tears.

Whatever. I can't waste anything on that right now. My health issues are as much as I can handle. And right now, at noon-ish, it's time for bed.

Link | Leave a comment | Share

Sep. 15th, 2013 | 06:27 pm

I've never been this pissed off in my life. And it's all the time.

Tomorrow I jump through another hoop just to see if insurance will pay for the one and only medication that has even the remotest possibility of preventing the flares that could lead to me waking up blind.

It's fucking ridiculous. I have 2 diseases that would benefit from my being on rituximab, and 3 separate top-of-their-fields specialists have stated they've never encountered anyone with such a damaging, non-stop, every symptom on the extreme end of things, case of Grave's disease. What more do they need? I just found out it might not ever get completely out of trials for Grave's because they've taken the research as far as they need to make credible medical claims and the rest of the process for the FDA to make in an on-label use might not be worth it financially.

And in the meantime, I have minor flares at least monthly. My only option to keep it all under control is prednisone and I've been taking so much for so long that the side effects are building up and causing new medical issues.

I just had so much hope for my last eye surgery and I feel betrayed... by nothing I can point at except all of it.

But tomorrow I see the head of endocrinology who is supposed to have conferenced with my other docs plus the head of rheumatology and he'll let me know if they think they have a strategy that will lead to me getting rituximab. And I have to put aside any anger, because I need these docs to go above and beyond and that's more likely if they like me. But my last several appointments I haven't been able to maintain my usual dark cheer, and instead have been complaining, irritated... a bad patient.

And I'm really over having strings of nightmares and stress dreams every night.

Another surgery in December. Then another 3 months later. Then at least one more after that. This feeling isn't going anywhere. They've all but admitted that they will not, after all, be able to restore my eyesight to non-visually-impaired. Better than it is right now - most probably - but good enough to ride a bike... ehhh, well, let's wait and see (hahaha).

I'll get through this because that's what will happen through no effort or fault of my own.

Link | Leave a comment {4} | Share

Aug. 21st, 2013 | 05:13 pm

My brain is ringing.

I need more than I have.

I keep trying to inspire myself, but that now approaches what could only be considered denial.

I am reminded of what got me here. I mean what *really* landed me where I am.

I cannot contain my rage any longer. I thought my days of burning were in my past, but it still eats me away.

Do you know that I've thought about causing a bad lupus flare just so I can qualify for rituximab? All I have to do is spend a couple of days in the sun, and then get my heart rate up way high for a few hours and I'll flop right over.

And I cannot stop obsessing about things long in the past.

It's all related. Another study came out re: thyroid disease and something they weren't even looking for popped up - women who experienced physical abuse as children are 40% more likely to develop thyroid problems.

I've always thought the stuff my parents did to me was what turned my immune system bonkers. Fear causes adrenalin and cortisol rushes, and both are responsible for immune system regulation.

But that's worse than Grave's when it comes to healing. I'm off-the-charts with Grave's, unusual, extreme. I'm sadly typical of those who went through abuse as children.

I'm having nightmares, if I sleep at all.

One pain triggers another triggers another.

I get brief moments of detached clarity and I try to use them the best that I can.

But I am empty. Spent. Can't afford hope because I can't take more disappointment.

Link | Leave a comment | Share

Aug. 21st, 2013 | 09:24 am

My eye surgery did nothing to improve my vision. I will need at least 2 more muscle surgeries. The surgeon said it was the worst she's ever seen, and my eye muscles are so bunched/swollen/tight that she can only do so much with each surgery - they have to be stretched and loosened but only so much can be done at once.

I am in a lot of pain. My eye muscles keep cramping. Turning my eyes sends pain up into my head and all the way down to my neck.

Ibuprofen was helping but now I have a GI bleed, so it's back to the nearly useless tylenol.

I'm feeling grim. All this trouble and pain for no noticeable improvement, and several surgeries ahead.

Link | Leave a comment {4} | Share

Aug. 6th, 2013 | 04:17 pm

All these eye surgeries are going to be for nothing and I'll end up blind anyway if I don't get biologics.

I have now had 3 different teaching doctors in 3 different specialties tell me that I have the worst thyroid eye disease they've ever witnessed or treated. This is confirmed by my Grave's forums experiences - everyone else gets pages of other people's experiences; I get:"wow. that sucks. good luck".

I have a great team when it comes to Grave's - all three eye docs AND endocrinology. They are fighting for me, and convincing rheumatology to play along and make a case for rituximab for lupus. This puts me in the position of actually hoping my echocardiogram shows mild pericarditis.

I'm a little less anxious about the post-surgical adjustment procedure. The one right after surgery should be easy - I usually get 4-6 hours of time that I can't remember too much of, so I should be doped enough to be compliant and not apt to have an adrenaline rush. I'm still very concerned about tolerating a second adjustment a week later. Even if I don't need any adjustment, I still have to let the surgeon cut back the sutures. Conscious and eyes open. No way to use visualization, so all I've got left is breathing to help control any ascent into panic.

The stress I am experiencing is so intense I am dissociating. and thankful for it.

Link | Leave a comment | Share

Jul. 30th, 2013 | 02:25 pm

After discovering that some additional medication took away the constant tremors and unwell flickering, I just added it to my routine. It's working too well to stop, and it tells me that my anxiety is really high.

I'm really focused on gaining weight. I'm counting calories and using a spreadsheet to mark targets and estimate excess calories. I'm getting a scale, so I can adjust accordingly. I want to gain 1-2 lbs/wk, and not more. When I get to 115, I'll keep the same calorie goals and add back some exercise and yoga so I can build muscle.

I was really losing my perception and computation skills there for a while. My thoughts were ranging from obsessive to harmful to bizarre. I think I finally understand why my coping mechanism as a youth and young adult was to feed the fire and burn burn burn... because then it would become so loud the logical part of me that recoiled in horror at my actions was unheard.

Surgery is 2 weeks from tomorrow. Next week I have a 3 pre-op consults: one with the surgeon who did my decompression, one with the surgeon who will be operating on the 14th, and one with anesthesiology.

I'm pulling myself along. I know this surgery, especially for its benefits, is pretty easy. It the whole adjustable suture thing that has me freaking out. I mean, I do have some... generalized anxiety about having surgery, in the sense that I've had so much done in such a short time and my body just doesn't want to be cut or otherwise fucked with. The rebellion, as usual, will be in the form of swelling.

Link | Leave a comment | Share

Jul. 25th, 2013 | 12:55 pm

If I wasn't having surgery in 3 weeks and I didn't need to be healthy in the meantime...

after covering it for 3 years (and me being on it for 6), Medicaid decided to deny klonopin. I ended up paying for it out of pocket, and will need to do so from now on apparently.

Abrupt cessation of klonopin can be deadly. If I didn't need to be healthy, I'd let the withdrawal process start, then I'd end up in the ER with a 150 resting heart rate, cold sweats, tremors, possibly seizures, hallucinating, paranoid and loaded with magical thinking.

Then Medicaid would end up paying for a hospital stay while I go through withdrawals.

But I have to stay healthy for surgery, so I had to buy it myself. It was a lot (to me - $48) at Walgreen's, but I needed it before I could resume the capability to shop around for better pricing. Thankfully, Costco (you don't have to be a member to use their pharmacy) has it for $12.50/mo, so that's where I will be refilling it.

Benzos work for me without turning my mind into soup. The state prefers buspar over benzos, and I do not tolerate buspar *at all*. Benzos do their job without a lot of side effects, AND I'm on a relatively low dose, so my crazy isn't obliterated, it's moderated... and likewise my logic circuits.

But this all makes me terrified of what might get denied re:meds after eye surgery. I've left a message for the doctor asking her to go through the pre-approval process now, but it's the stupidest system. Only the doctors can make the requests, but they don't tell the doctors anything about approval/denial. Instead, they SNAIL MAIL A LETTER TO ME. So it's 7-10 days after the request is made that I find anything out from them.

Like I wasn't stressed enough about this surgery. Worrying about not being able to afford post-op antibiotics and pain relief scares the fuck out of me. And then it happens again in the fall when I have the second surgery.

It's defeating. More cuts to Medicaid are coming. And higher copays.

It's making me very sad, on the verge of tears. fight fight fight. I'm fucking sick. Fighting *that* is all I've got, but I'll end up dead if I don't find the reserves. Expenses are going up, with no increase in revenue in the next year, at least.

It is what it is, so I need to process the emotions and move on. surgery money bureaucracies travel needles

and strange dreams.

Link | Leave a comment | Share

Jul. 23rd, 2013 | 10:32 am

I am so glad to be off of Geodon and on Seroquel. The Geodon was really messing with my thoughts and energy and outlook. I am WAY better.
It's sorta crazy how much more energy I have now. AND my appetite is slowly returning. I'm augmenting with protein shakes until I am up to 115lbs, and then I'll adjust to maintain that weight.

Today I hope to get rest as I've been a little taut for days. My mom was rear-ended by a semi and her back is messed up. She just barely recuperated from shoulder surgery. I feel really badly that she is in pain yet again.

Also, there's this:

Super Summer Sale

Link | Leave a comment {2} | Share

Jul. 2nd, 2013 | 08:22 am

I'm really fed up with my life revolving around medical crap yet not getting any better. I should be grateful... I may not be better but I'm alive and not blind, so there's that.

I don't get why I'm so skinny. I had gotten up to 135lbs, and while that might've been the high end of acceptable for my height, I liked it. Right now, I'd be happy if I could get to 115 and be able to maintain it without crying while I choke down food.

I'm going to try Boost drinks. Out of all the "nutritional" drinks, this one seems the best option. But unless I get them off of Amazon, they are WAY expensive. Almost a penny a calorie. I figure I need 2 of them per day, plus whatever else I can get down, in order to gain weight.

The good news is that I seem to have more of an appetite since reducing the Geodon. One of the side effects is anorexia, which I already have (not the psychological variety, but a physical aversion/bad reaction to eating). I kinda want to smack my doctor because I was already very underweight when I started the Geodon.

I see the head shrinker this afternoon, and I'll find out what options I have left. It's going to be a Medicaid nightmare to get a new prescription - because of the holiday and then weekend, I'm guessing it won't be until next Monday, at the earliest, that my new med gets approved.

Geodon withdrawal is unpleasant. By the time I need to take the lowered dosage, I'm shaking and sweaty. Then, after I take it, my stomach starts turning over. I just realized this in the last couple of days since I've been experimenting and trying to differentiate my own diagnosis.

I'm concerned that full withdrawal could trigger a flare, so I'm hoping I can stay on the lowered dose of Geodon until I get whatever new medication is prescribed. I have the pills, but I don't know the medical protocol. Geodon has a really short half-life, so I don't think it should be necessary for me to be off of it for any length of time before starting something new.

Link | Leave a comment | Share

Jul. 1st, 2013 | 08:13 am

I'm stunned at how much better I feel since cutting the Geodon down. WOW was it messing with my head and energy levels. What a weird medication.

I don't know what options I have left, although I am guessing there are plenty. I want a medication that causes weight gain, too. I'd rather be chubby than this skinny again (100 lbs).

But for all I know I was going through a flare, because I was having a lot of issues with eye swelling and that has resolved, too. I don't know if Geodon could make that worse.

What I do know is that if I could rely on the energy I've had for the past 3 days, and after I get my eyesight returned, I would be a capable person again. But I'm not that stupid any longer. It will last for as long as it does, and then I'll flare again.

Dammit anyway, I want to go on a biologic and get this shit under control. I'm only 42. I want a middle age that isn't riddled with health issues and an old age where I am infirm. When I look into the future and see that possibility - that's when the dark thoughts take over.

Also - I need people in my face-to-face life. I've been a recluse for almost 2 years. I'm finally in a financial position where I can have a limited social life - a cuppa cuppa and a pastry are in the budget. Most of the people I care about, though, live quite a distance. And I'm not someone who can manufacture intimacy, yet I am an over-sharer (obviously). So I tend to scare new people off. I *am* a bit of a mess and even the people who've known me for decades get worn by my trials and are always concerned for me... how do I start something with someone new?

There are a few Chicago former LJ peeps that I could reach out to, I think, but I feel SO needy and I don't want to exhaust someone.

Yet again, I wish... I wish that my family wasn't so screwed up.

Link | Leave a comment | Share

Jun. 30th, 2013 | 12:58 pm

The dark cloud was definitely strengthened by the Geodon. I've been on a half dose for a couple of days and it's made a big difference. I'm going through withdrawals of sorts - my whole body is shaking by the time I take my daily dose.

I see my psychiatrist on Tuesday, and hopefully I'll get a prescription for a substitute right away, and I can go off the Geodon and have any withdrawal effects modified by the new prescription. However, I anticipate it taking at least a week for a new medication to get approved, at least in part because the place I go to for mental health care is slow with getting paperwork in, and my doc is only there part time. I will, of course, discuss this with him at the appointment.

I also have A LOT more energy during the day. I'm still out of it at night, though, even when I nap. A lot of it is that my eyes get really really tired.

Link | Leave a comment {1} | Share

Jun. 28th, 2013 | 12:03 pm

I realized today that a lot of my dark thoughts come from a worry about the future. And I can't really put that into perspective until I know how much of my eyesight will return, and what I'll be able to do after that point.

But even so, the long term seems scary. My disability is barely subsistence and everything keeps getting more expensive. I'm 42. Scraping by for the remainder of my life seems daunting. It's not that I currently want for anything. In fact, my budgeting skills and ability to hold off until I get a clearance item with a coupon code and free shipping means that in the immediate my needs are met.

But for how long and what happens as I enter old age?

Also, I've been obsessed with death, dying, illness, etc. I'm worried about my mom, my cats, Bob, myself, my friends, other family.

Today is better than last night, which was pretty awful. I took 1mg ativan eventually, and that helped. I'm going to experiment with taking the Geodon today. I'm supposed to take it with a meal (not just some food, but the target is 500 calories and that's way more than I eat all at once). I also take it all before bed. It gets really difficult to make sure I'm hungry enough to even eat 1/2 that many calories at 9-10pm. So today, I'll try taking it after dinner, but put off my benzos until bed time, and see if I get too tired or can't sleep later or what happens. I probably will end up off of it rather soon anyway.

Link | Leave a comment | Share

Jun. 28th, 2013 | 08:06 am

Battling very bad very dark thoughts. I thought the news of the upcoming surgery had banished them away, but only for a couple of weeks... now I'm back to being the really bad sort of crazy.

And I need to stop Geodon, apparently. Out of nowhere, I start chewing. I guess this could become permanent. I haven't been liking it much anyway, but I'm running out of alternatives. My body is SO sensitive. Combine that with my weight issues and a wonky-fast metabolism and I tend to get many side effects from medications... let alone how they all interact.

I'm concerned with my level of fatigue, but in another sense it helps me rest all day and helps pass the time between now and surgery. I am SO limited until then, and I know a lot of the fatigue is brain strain from not being able to see.

I'm mostly able to push the dark thoughts away, but I'm feeling it all in my body as well as my mind. I think part of that is the Geodon. I'm mostly ok during the day, but as the night wears on my mood gets gloomy.

FUCK. It really comes down to being able to see and waiting around. Just under 7 weeks to go.

Link | Leave a comment | Share

Jun. 26th, 2013 | 09:11 am

Patching again today - brain just can't handle the double images. I had to stop for about a week - the lack of light was causing depression, plus my right eye has uncrossed a bit. But for some reason, today I can't deal.

It's really weird. I can usually see my monitor unpatched. The doc says I have one distance and position where my eyes align, and it's about 18 inches in front of me. I still close one eye a lot when using the computer, but today I need the patch.

I'm also able to use my lens prism again with some success - it's good enough for watching TV or talking to Bob. My glasses totally mess up my close-up vision, though, so I have to take them off to do dishes or deal with my phone or eat. I only have one pair, so I hate always taking them on and off. Most of the day they are off, unless I am out and about.

7 weeks until surgery. Today, that seems like a long time but I know that it will fly by... especially as the date gets closer and I have all the pre-surgical consultations and testing. Plus my disability review happens right in the middle of now and then, and while I'm nearly 100% certain it will go through again, there's still all the bureaucratic baloney and hoops to jump through. I'm still really irritated that the SocSec office is so difficult to get to through public transportation, especially considering how close I live to it.

I'm really hoping there's some sort of decent work from home situation I can find after I can see again. I don't need to make much, but I'd like to be off of disability pay, and paying into soc sec, for a while. It'll mean better benefits down the road, but also I just want to be productive. And not through spending money on crochet stuff that just barely pays itself off.

I keep wandering between worrying about now and worrying about the long-term. I suppose that is pre-surgical anxiety, for the most part. But also - I look into the future and know that my disability benefits are not going to keep up with increases in rent and utilities and such and it feels very unstable. Especially as I get older and my skills get dusty and I get more difficult to employ.

I suppose I should concentrate on right now. Right now, I'm financially stable. I have just enough, but it's enough. Anxiety about surgery is normal, and it's not at an unreasonable level. Although I imagine as it gets closer I'll have more sleep issues because that's just how it goes.

Link | Leave a comment | Share

Jun. 24th, 2013 | 11:36 am

I am so glad the days now get shorter. The sunlight has been getting to me, and not even having nighttime for a walkabout has sucked. The heat this week... well, today isn't so bad because it's cloudy. As long as it stays that way, the apartment doesn't get too bad.

My eyes feel a little better today. Hopefully the weandown can continue. It could be that I'm just experiencing extreme lid droop, except that my upper cheeks are so puffy I can see them. That doesn't make sense if I am going down on prednisone.

My wacky relationship with sleep continues and it makes cognitive functioning a challenge, not to mention I get really tired at odd times and can't seem to get regulated. I need a schedule, and one that does not include being wide awake at 4 am, but I keep passing out before 10pm no matter how hard I try to stay awake or whether or not I've napped.

I'd like to be napping right now but I've got the shakes. So I'm wearing my eyes out because then at least I feel the need to keep them closed for a while.

I'm slowly putting together a super-sale of my patterns, with an accompanying email campaign, in order to raise the funds for another year of hosting for both of my websites. I've made enough money through the course of the year to justify it, but at the moment those accounts are drained and I'd like them to pay for themselves in the immediate. August will be an expensive month, with the surgery and taxis and likely eating take out for a few days at a time.

Then the time between then and the second surgery will also likely be loaded with appointments... all the ones I am skipping now, plus follow-ups and then another round of pre-surgical consults... which I need every time because of lupus and Grave's and the complications I have. Besides that I have tachychardia and a prolapsed mitral valve, I have a history of pericarditis. My thyroid levels need to be normal, too, or they'll cancel surgery. This one isn't eyesight threatening, so I have to be in otherwise stable health. They don't expect "good" health from someone with lupus, but the heart stuff is always of concern.

Although I imagine I will tire of them quickly, Cliff bars aren't as bad as I remember and I can get one down and get 240 calories. Even if it takes me an hour to eat it, it's still probably the densest and most nutritious of the convenience food options I have. I think I can make a proximity of my own, that I'll like better, but for now the total convenience of food from a wrapper is sadly in order.

Link | Leave a comment | Share

Jun. 22nd, 2013 | 04:49 pm

Heat wave this week. Thankfully, I have no obligations and can just relax indoors and avoid the sun entirely. I'm supposed to see the dermatologist on Thursday, but my regular doc is out for the summer (teaching hospital) and I'm not in a skin flare and they've already said they won't manage my plaquenil, so I'm rescheduling for after my surgery stitches are out. Sometimes stitches make me flare, so that will be a good time for a checkup with them.

With that out of the way, I don't have anything until July 9th, when I see the headshrinkers. I was able to set an appointment for both my therapist and doctor back-to-back, which is awesome. I wish I could ask for 2 months of refills, but instead I'm going to ask for an alternative to Geodon. It's just not working out. I mean, I have almost 3 more weeks to give it a go, and maybe I'm still in the adjustment phase.

Also on the medication front - I don't think the prednisone weandown is working out. I've been really really puffy and my eyes always feel tired. It's only been a week on the lowered dose, so I'll give that another week-ish, too, unless it gets worse. For right now, ibuprofen and cold compresses are helping. I'd rather take ibuprofen than prednisone, but both have long-term-use side effects.

I can't risk not having the surgery in August. It'll crack me if I have to wait again. So even though it means going to the eye doc during what I was hoping was my break from docs will be needed because he'll want to see me before re-upping the prednisone dosage, and I might even need another scan. I kinda want a scan, to be honest, because it's the best way to tell the specifics. If it's just eyelid fat that is swelling, there's no big deal beyond discomfort and even more limited vision and it won't affect my eye position. If there's interior swelling, not only are my optic nerves in danger but my eye position could shift yet again, and that's what will rule out muscle surgery.

I have a stash of prednisone and I'm somewhat tempted to just up my dose myself and call my doc and tell him that's what I did and see if it makes a difference. I probably shouldn't only because it's better to have everything documented by them. Needing to up the prednisone means, technically, I'm still flaring... we just have it under control.

I figured as much because I'm losing weight again. I'm really working on eating so it doesn't get even worse. I can barely manage 1200 calories/day. Granted, my activity level is really low so that isn't as awful as it sounds. I'm trying to boost it with more whole milk. And the least offensive convenience food I can find - whole meat chicken tenders. All the breading makes them high calorie, but I can only eat one, maybe two, at a time. I wish I even liked high calorie snack food at this point, but the only thing I can think of is pudding and even that has probably gotten too sweet for me. I like pita chips, but it's not like I can eat a bag of them in a day. A couple handfuls at most.

French toast seems to be a good thing. Although again, I can't eat much at once. But if I use thick enough bread, I can get a whole egg on one piece and actually have something of a meal. Still not a lot of calories, but at least they are good ones (compared to the high calorie crap I seem to be faced with).

I'm contemplating energy type bars to add to the mix. I'm not a big fan but I weigh 100lbs.

Link | Leave a comment | Share

Jun. 21st, 2013 | 03:36 pm

I got to see my mom and it was good. That she is a nurse really helps... she gives me perspective because her viewpoint is medical, not emotional. Plus she's not apt to make excuses for anyone, especially me. So when she tells me I need to cut myself some slack, and roll with the very normal emotions I am experiencing, it sets me at ease.

When you live it, it becomes a norm of sorts, and so thinking of my illness(es) as serious conditions is something I forget. I don't forget how I feel, I just stop giving myself credit for trying. I discount what I *do* accomplish because I don't consider my circumstances and I compare my daily deeds to those of my peers.

It doesn't help with the mind-crushing boredom, but it does give me hope that when I can see, I will find something to do... because I always have. I've never been a sit around kinda person. I've always been as involved as I can get.

More than anything, costuming has pulled my interests again, although I did just design a new sweaterdress that I think I will have to stitch up.

But I also want to find a way to contribute to my world, and not just do stuff at my own whims. I've thought about setting something up where I make scarves and hats and use the profits to make hats and scarves to donate, but that leads to self-promoting crap. If I could find a charity like that in existence that subsidized materials, I would jump on it.

I'm almost in the mood for administrative type stuff... anything with MS Office. But... while I think I'll have 20 hours/wk to give after my eyesight returns, I can't predict when those 20 hours will happen so work outside my home isn't realistic... yet. It's still my goal, although no one else (doctors, mom, Bob) seems to think I'll reach it.

Link | Leave a comment | Share

Jun. 20th, 2013 | 11:26 am

I'm going to see my mom tomorrow and we're going to the National Museum of Mexican Art. I can't really see any details, but I've been there a bunch and she's never been.

I kinda just want some time to talk though. I need my mom, eh? She's been through her own stress and I hate to pile on, so I'm going to try and keep it on the easy side... but still, I...

Ok, maybe dumping here will help. I thought the dark thoughts had lifted after I found out my eye surgeries had been moved up. And then I stopped patching to stop the effect of the literal darkness. But...

distant yet persistent thoughts of self-harm haunt my edges. I can push them away, almost laugh at them, but the shape they take is scary because they're easy to accomplish. SO if I am not in some sort of balance, I worry my ability to bat those thoughts away won't be so simple. That I have a brand new therapist does not help. It's going to take 4-5 sessions just to give her the basics, so she can understand where I am at and why. And I have to talk about shit that, while I am mostly over, still drains me emotionally and physically.

The darkness comes from feeling useless and being worried that my eyesight returning won't help much. I'm not getting back into the business of crochet. The money isn't there as a pattern writer, and I don't have the time/energy to both create and market and sell completed works. I need something completely outside of self-marketing, to be honest. Self-employment was great while it lasted, but I need to find something work-from-home where someone is signing a paycheck.

And before that happens/is possible, I need something to do with my time that is productive. I am thrilled that I'll be able to clean again once I can see again, but this place is small and upkeep isn't a full-time job, even with cooking regularly.

8 weeks until muscle surgery #1. Excited. A little scared. Hopeful.

Link | Leave a comment | Share

Jun. 20th, 2013 | 09:08 am

I had the realization today that no... I do not, in fact, want to be responsible for raising a child at this point in my life. That realization made the mourning feeling almost disappear. I'm sure I'll have lots of emotions over time about this, and always have a regret, but seriously...

the thought of being the go-to person for a forming human is just not in my bag of tricks any longer.

I'm so glad I am realizing this about myself. I think Bob probably feels the same way, but just doesn't realize it because he hasn't done it before. I know him, and the constant neediness of a child would stress him to the max.

I've spent the past decade trying to get healthy with one major purpose in mind - to get pregnant. Everything about the future was predicated on the idea that there would be a child to take care of. That being changed, I need to re-imagine the next few decades of my life and figure out where to go, what to do.

That will wait, though, until after I know how much of my eyesight I get back and how my new levels of fatigue even out after I can take less Geodon (when I'm weaned lower on prednisone - I'm on 30mg/day right now).

I'm skeptical of the wean-down, though... my eyes are a lot puffier again. I've been using cold compresses and they help physically but I don't know if they do anything physiologically (ie help enough with the swelling to keep my optic nerves out of danger).

I need to quit smoking... again... the prednisone crazies got me started again. I feel like such an ass. I went through the process of quitting only to start up again and need to go through that pain again. SO STUPID. What I need to do is find a not-too-expensive not-too-bad-for-me snack that I can eat when I want to smoke, and then I can gain the weight I need AND lose the monkey.

Link | Leave a comment | Share

Jun. 19th, 2013 | 10:42 am

Made bread yesterday. Not fancy artisan style, just milk bread. But I wanted something rich and a little cake-like, that would stay moist for a little while. It's an effort to get me to eat sandwiches, and the grocery bread keeps drying out (I get it from the bakery, and their options are limited to crusty varieties, and I'm not a fan of mass-produced factory bread).

I said to hell with blood sugar and had a piece slathered in nutella. OMG. And it's SO calorie dense. For now, I'm going to say to heck with blood sugar and eat to gain weight and take metformin if I end up needing it. I don't want diabetes, but I'm really really really skinny again and there's a trade-off I need to make.

I just can't do it with meat/flesh. I don't like the fatty stuff, and I can't eat enough of the lean stuff to make it worth trying to gag down.

I'd eat more roasted garbanzos, but skinning them takes for-freaking-ever. I should try experimenting with baking them with the skins on and see... I just know I can't tolerate the skins in soup.

Without exception, up until now I've been excited and happy for people I know who are expecting or have babies. No envy whatsoever. A little longing maybe, but pure joy for the parents. I just found out someone I know is pregnant and it made me cry. This person already screwed up one kid, bounces from relationships, is broke and can't afford the family she already has, and she gets to have another kid. It hurts. The whole reason I'm not trying to get pregnant, even after the eye surgeries, is because it's not in the best interests of a potential child. And someone else who has shown she can't deal with life, let alone being a proper mother, is going at it again. bleh.

Link | Leave a comment {6} | Share

Jun. 18th, 2013 | 07:24 am

I've lost a lot more weight than I realized. I bought cheapo shorts online, in a size 2, thinking they might be a close fit. Bahahaha - they are so loose I don't need to unbutton them to get them on. This is ridiculous.

I don't know how to gain weight the right way. I have to avoid sugar and I don't care much for meat. I wish Ensure type stuff didn't have corn syrup, and Glycerna is way expensive. Besides, a glass of chocolate milk with a multivitamin and a protein boost is probably just as good. I don't have any protein powder but I'm considering it.

My appetite is gone except for the stuff I need to avoid. My lack of calories just makes me carb-starved. My energy to cook is nearly non-existent. I need cheap, easy and healthy and that just doesn't seem to exist.

Link | Leave a comment {2} | Share

Jun. 17th, 2013 | 10:20 am

I should be resting. I have to be awake this afternoon for deliveries of medication that I have to sign for.

I sleep lightly enough, and have a sign on the door that says to knock loudly, so I don't worry about sleeping through... the problem is that when I rise from sleeping, I get about 30 seconds of blindness and the delivery people are in such a rush that I am not in focus when I open the door... and then they're gone and the package is somewhere on the steps or something and the sun makes the incoming vision overbright. All in all, in takes me a full 2 minutes to be able to see outside.

If I'm already upright, but sitting in a lighted room, the whole event is only about 30 seconds as I rise from my chair and expose myself to the sun.

This issue arose after my third decompression. That was almost a year ago, and I still also have facial numbness. I think they are all related, and probably a permanent condition. I also had nerve damage from my thyroidectomy which makes it impossible for me to hold a note when singing (and also causes stuff I'm drinking to occasionally back up into my nose).

bleh - I wish I was more tired right now. I'll be SO wiped out by this afternoon if I don't get some rest. Besides, I'm still in that "nothing to do" phase.

I don't know if I've mentioned it here, but after I can see I've thought about medical billing/coding. Apparently, it is one of the few non-call-center at-home jobs out there... although I am somewhat skeptical about scams. Social Security has a vocational rehabilitation program that I will explore - again, when I can see, and if my energy levels increase enough to include more traveling about.

I am so thankful that I only have one more medical appt for June and only 2 in July (well, 3, but 2 are back-to-back in the same clinic)... because in August I have all my pre-surgical consults, then the surgery, then the post-surgical. Then a bunch of follow-up in September and monitoring for when I can have muscle surgery #2. Then all the pre-surgical stuff starts again. It'll be non-stop for about 3-4 months. But then I'll be able to see again, so it is all worth it.

Link | Leave a comment | Share

Jun. 16th, 2013 | 10:37 am

I suppose I could feel better about today if I just thought of it in terms of honoring the father substitutes that I had that were excellent - my grandfather and great-uncle Jack. But they weren't the same thing as a dad, and I did have a man who stepped into my life and claimed that position.

I don't even have to approach the truly horrible stuff to point out how much my step-father sucked. I knew he was a crooked cop as young as 5. I knew that the drugs were illegal both to use and sell and that he was doing both. I knew the meaning of "hot" and knew that my dad dealt in stolen merchandise and took bribes and participated in other schemes.

Add in the he was a violent addicted predator, and there aren't very many memories that aren't screwed up by something he did.

It's a good thing I'm exhausted today, and I took an ativan to help that along. I'm going to sleep sleep sleep until Bob returns from visiting his dad.

I wish my psych clinic wasn't mostly rehab, because then it wouldn't be such a pita to get benzos. I'm still weaning down off of the prednisone, and when not on it I don't need a strong anti-psychotic. Occasional ativan, on top of regular klonopin, would do just fine and not make me so foggy. For now, and through the surgeries, it's probably ok... I need the rest and the absence of restlessness.

Even though I feel better, being patched still has the effect of a depression, or a pushing down feeling from the side I am patched. It's really weird, and I try to go without the patch sometimes just to let in more light. It seems to help in one sense, but then my brain is tired from the double vision. The best distance is on the computer, and it lets off a lot of light, so I am trying to go unpatched without having to crank up the font.

Link | Leave a comment | Share

Jun. 14th, 2013 | 08:52 am

I forget how much writing here daily helps me (and gives me something to do for a little while).

My disability review comes up in a month. Beyond the apprehension that goes along with dealing with the federal government, I'm SO not worried about getting re-approved. My total medical file between now and the last time they checked is several feet of stacked paperwork. What I do worry about is that it comes as I approach surgery, and with all the pre-op appointments, I'm not going to have a lot of time for getting to the social security office.

Which reminds me... it is in the WORST place ever for public transportation, and disabled people have to get there. How could that not somehow be contrived? You'd think a place where disabled people frequent, a government agency, would have it in the design of things to make getting there easier. The least amount of walking I'd need to do, after taking 2 buses, is 3/4 mile each way... and the building is only just over 2 miles from where I live.

I'm hoping there's a chance it can all be done by mail/internet/fax/phone. I think my end of it consists of explaining my symptoms and how they affect my daily life, and signing a bunch of releases so that they can get my medical records. I think they can request a financial inquiry or bank statement, but that's not an issue.

I have an amazing wonderful 2 whole weeks without a medical appointment. I am going to get as much rest as possible. Bob will be doing Father's Day stuff this weekend so I won't see much of him, which is a bummer. I've been sorta lonely.

I hope we have a long autumn and easy winter so that I can take advantage of seeing again, and actually get out into the world on occasion.

I'm still weaning off of prednisone and I'm hoping that I can reach a level where I can reduce the amount of Geodon I am taking. It leaves me dragged out and I think I have some depression from it. I mean... it seems like I am adjusting the longer I take it, but my energy levels are SO low. I have muscle fatigue and I really have to push myself to get into motion. I get short bursts of energy that I try to use to do stuff like washing dishes or taking a shower. It drives me nuts that it's this bad.

Link | Leave a comment | Share

Jun. 13th, 2013 | 03:43 pm

I seem to be evening out a little bit with the Geodon and sleep and cognitive fogginess. I'm still waking up several times/night but I am able to fall back asleep. And during the day, I have several chunks of several hours of bright awakeness.

Not every day - I still need 2 or 3 days/week where I don't do much more than stay in bed. Those days come after long medical appointment days, usually.

I'm not quite happy with how early I am passing out at night but now that I can force myself to be sleepy enough to lay in bed until at least 6, I don't mind. I hate being awake at 4 and being wide awake. That kept happening for months, but I think I've finally broken that cycle.

After realizing I didn't have a single pair of shorts, not even raggedy cut-offs, I had to make a decision about sizing. Do I get something that fits now, or fits should I gain some weight? I decided to go with now, seeing as how shorts season is fairly brief in Chicago... but jeans are even too hot for inside the apartment unless I blast the air conditioner (not a preference) and I don't want to be tempted into the level of sloth that is sitting around in my underwear. I went super cheap so that I won't feel badly if I only get one season out of them and my fingers are crossed that they'll fit when they arrive (although I can return for free, even the shipping).

I should be trying to nap but I had my first appointment with my new therapist and my head is full of junk. I need a doctor who doesn't mainly deal with addicts because an ativan would do the trick. And it's just silly that someone in my situation can't have that simple relief. I mean really - I already take klonopin, and will probably do so for the rest of my life, who the fuck cares if I up the benzos? There won't ever be some need for me to go off of them - I only take 3mg klonopin. I'm not doing any organ damage. Yes, I would suffer withdrawals but the point is that there would never be a reason to need to unless I personally decided I wanted to stop taking it. So why not just let me have some rescue ativan? It helps me deal with medical crap, it helps me relax. And, well, it helps me laugh. It makes me giddy/happy, and I don't care if it's chemically induced.

Thinking about it... my sleep started getting better when I got the news about the surgeries being moved up. It just changes everything to have a date and for it to be within a reasonable reach. I'm being restored.

Link | Leave a comment | Share

Jun. 13th, 2013 | 08:20 am

In my efforts to accept my circumstances, I've been thinking about the upside to not having another child.

The biggest is having *a lot* more money in our old age. This is an entirely selfish thing, to me, in one way, and completely practical in another... because chances are we'll probably never get too much beyond our current standard of living (if we're saving for retirement). Kids are expensive, even when being extremely resourceful.

The downside is not having that wealth of family in one's old age, and that makes me sad.

Link | Leave a comment | Share

Jun. 12th, 2013 | 05:58 pm

I am both disappointed and proud of my decision about having a baby. My desire is not diminished and the thought of not bringing the result of Bob and I combining into this world wrecks me.

BUT it's that exact love I have for a being that does not currently exist that would prevent me from creating it.

I am not underestimating the effect being able to see will have on my whole life, outlook, energy, etc. I know that my abilities to function will go up dramatically.

What I can't know is when or if I will flare again. Lupus flares have been manageable because of medication, but Grave's pops up more suddenly and I get the rarest of symptoms AND my eyesight will always be in danger.

If I had greater resources, I might feel differently about a baby. I don't mean money - I mean people. It took a village to raise me right. I've been so sick for so long that I don't really have that many people in my face-to-face life... and my mom and Bob's mom are at retirement age and have some health issues and live over an hour away. I can't just call someone up and say "hey, today is rough and I could use some help"... I mean, I don't even have access to a babysitter or a companion for medical appointments.

It's not that I doubt my ability to figure it out, it's that I don't think that's the right way to go about bringing a life into the world.

It's mostly moot anyway, though. I have the first eye muscle surgery in August, the second in November and then the eyelid surgery sometime in early spring 2014... that'll put me at 43 years old by the time I can even consider getting pregnant.

Which brings me to the meantime and WTF to do about birth control. I wish IUDs worked differently, but for me personally their mechanism isn't something I can go along with. I don't judge others who use them. That's why I believe in CHOICE. I get to make mine, you get to make yours. That said, an IUD would be ideal for every reason other than the bit about disrupting implantation of an embryo.

and for totally honesty... at this point, I would want to birth a seven year old. An infant - I can do that. But a toddler - the thought actually irritates me. I mean, I know it would be different were the toddle mine own, but STILL, I've done it before and it's a lot of work. 24/7. If I can't think about that work and be joyful, I have no business taking it on.

Link | Leave a comment {3} | Share

Jun. 10th, 2013 | 01:36 pm

All I can think about is seeing again. The effect of the patch, and shutting out half my light and vision, is a sort of oppressive darkness. I believe the roots are physical, but many of the manifestations are psychological and result in a sort of depression.

My mom was patched as a kid for a lazy eye and even though she was just 3, she remembers the feeling I am writing about. It's not depression in a sad or mournful way, but the darkness darkens thoughts, too. It's harder to be happy, or light, or funny.

I've wondered if it matters which eye is patched, if there are differences in the feelings.

I'll still be patched after the first surgery, so I've go 5 months, at most, to go. If I go by how long it has taken other surgical swelling to subside, I'm guessing it'll be the full 5 months because I'll need the full 3 to recover from the first surgery.

My blue hair is growing out. It's still ok looking, but in a couple of months the roots will be at full-blown trashy length. I have a few ideas about pulling through some highlights, but I don't think I can do it myself and a stylist would balk at what I want to do (and charge a steep fee). But I have an idea about growing it out without having to chop too much off at a time, so I can at least have it chin length by the end of the year. Then, when it gets to my shoulders, I'll just lop off whatever blue remains.

Just in time for my eyelid surgery, the last part of the process, and the part that besides repairing my droopy and ineffective eyelids will de-age me by a decade. So I'll have a headful of my own hair AND my eyes back again, sometime late next winter or early next spring. It'll be nice not feeling like a sea hag trying to make the best of it.

Link | Leave a comment | Share

Jun. 7th, 2013 | 02:30 pm

The more I learn, the more I realize these upcoming strabismus surgeries are going to be a breeze. After having bone removed from my skull 3 times in one year, I'm SO not worried about pain that is managed with ibuprofen eye drops.

I'm a little freaked out by the tweaking-the-sutures process, and feel my eyeball being tugged upon through the muscles, but again... compared to sinus debridement... so I'll sit and do choo-choo breathing for a few minutes, while hopped up on some ativan. Not a problem.

5 months, at most, until single vision.

The first surgery will correct up-down and right-left. The second will correct torque (rotation). So I won't have single vision after the first surgery, however my eyes will *look* aligned and centered.

Apparently, the eyelid droop will likely get even worse. *That* surgery will be early next spring, or maybe as early as February. I hear tell the recovery on that one is actually kinda painful but again - I can't imagine it's worse than bilateral orbital decompression. I needed 3 days of a morphine drip. They can do the eyelid surgery under light anesthesia although because I freak out and am a great big baby, I'm getting general... although I'd probably need general no matter what because (as usual) I have complications.

It's really comforting to know that my surgeon usually operates on children. She used to much more delicate spaces on much more precious patients. She's the most sought after strabismus surgeon in the state, and I get her because I'm an interesting teaching case, presenting with the most severe of potential symptoms of Grave's Eye Disease.

She said she'll be placing permanent sutures, too, to help keep everything in place if I should flare badly. I wonder if I'll feel them, or if they'll take any getting used to.

Mostly, I hope the second surgery is a success. The first is almost assuredly going to work because they have all sorts of ways to measure and tweak for up-down and right-left. The rotation, though, is more difficult to assess and perfect, and that's the one that might take a redo if I don't have single vision afterwards.

It's all very exciting. Finally some good news. And a surgery that's scheduled and not on some emergency basis. And every reason to let myself get the rest my body is insisting upon. And a near future with acceptable vision.

I am so grateful.

Link | Leave a comment | Share

Jun. 6th, 2013 | 11:42 am

I can't even express how happy I am about this. It's 2 whole months sooner, and only about 2 months away. That's SO doable, and changes my whole perspective. I was getting really depressed, which is foreign to me, and I can feel that lifting off of me.

I feel like I *can* relax. There's an endpoint to living in this scary dark warped visual world. I won't have perfect vision, but I'll be able to cross a street... wash dishes... stitch... photograph... read...

Link | Leave a comment {2} | Share

Jun. 6th, 2013 | 11:28 am

My strabismus surgery has been moved up (after I begged) to August 14th for the first, and then the second sometime in late October/early November. I'll be able to see by the holidays!

I'm a little nervous, but what I'd consider the normal amount of anyone who is going to have eye surgery. The recovery is sorta unknown - but I know it will be a cake walk compared to the recoveries of last year. Moving a few muscles around is nothing like the trauma of have skull bone removed.

It'll be weird at first because I'll have these adjustable sutures that stick out at the sides and top and bottom, and they'll tweak them right after surgery and then again a week later. The doctor also said it is likely I will have permanent interior sutures because it will help keep everything in place should I flare again.

And that's the big thing for now... NO FLARES. I mean, I'm what they call "hot" right now, but prednisone is keeping it in check and this is probably my baseline from now on anyway. What can't happen is a Grave's flare that causes my eyes to swell enough to shift position again. Then the whole 6-9 month wait starts all over.

So I am not going to feel guilty about sleeping my life away for the next 2 months in an effort to keep my immune system relaxed. After the surgeries, and when I can see again, I'll be productive once more. And that's the goal, so the interim is what it is.

No sun. At all. If I must go out then I use a taxi. 2 block walk maximum but NO waiting for public transportation in the sun. Not allowed, not even with a maxi skirt and umbrella. Maybe I'm being a princess but I need these surgeries to get my life back, and then I can worry about pushing myself on occasion.

Link | Leave a comment | Share

Jun. 3rd, 2013 | 08:49 am

phew - I was wrong about the slacker. It's just a dude that, in profile, looks a lot like the slacker. Apparently, my daughter has a type. hehe.

And on the topic of daughters - I really wish Bob could be the one to get pregnant. We've pretty much entirely ruled it out for me. So much that I am considering medications I've avoided because they are Class X for pregnancy.

Fatigue is such a weak word for what I've been dealing with the past several months. Taking care of myself has become a trial. Eating - bah. Takes too much effort to chew, let alone cook. I push myself when I get bits of energy, but I still have to save those up for the endless medical appointments.

This Thursday I have another eye marathon. The entire exam process takes 3-4 hours and at the end I am dilated (and blinded from it). I don't have that many hours in a row any longer. The dread I feel about the appointment makes it really difficult to get my ass there. I rescheduled from last week because I just didn't have it in me.

I really didn't think it would get this bad while I was still this young. I thought I had 20 more years.

I hate how it limits Bob. He's a homebody, so I'm not cramping his style too much, but we can't even go to the store together.

It will be a lot better when my eyes are uncrossed, but that's only part of the issue. The fatigue, while certainly exacerbated by eye-brain strain, doesn't seem to be going anywhere.

If I wasn't already neurotic, I would consider taking uppers. I mean - I drink coffee in the morning, but I can fall right back asleep after 2 large strong cups.

Link | Leave a comment | Share

May. 26th, 2013 | 03:12 pm

Apparently, my daughter is back with the slacker.

They really do love each other, but it's young love. And I feel her inability to really let go is sorta my fault for giving her abandonment issues.

It's not so much that he's a slacker as much as he's a bit of a... well, he's just sorta average otherwise. Not a slacker because he's bored, but boring. I mean, he's friendly enough, and a bit of a joker, but... nothing stands out.

Yes, I'm being horribly judgmental but my daughter will graduate college in a semester, and I'm worried about talk of marriage and worse - babies. I don't think my daughter wants kids for a while, but marriage... who knows? I want her to get out in the world first. So did my own mom, I suppose. But that's part of the point - I made that exact mistake.

She's beaming in the photo where he is kissing her cheek. That does make me happy for her. But... but...

Link | Leave a comment | Share

May. 23rd, 2013 | 09:42 am

I think the Geodon is working better as my body/brain adjusts.

It's been the most effective so far when it comes to bad thoughts and paranoia circles. The sleepiness without it venturing into actual sleep is annoying, but abating slightly.

A lot of it comes down to discipline of routine, and the most difficult part of that is eating. Without an appetite, I just want to eat something easy and get it over with. This leads to a lot of not eating, because I don't buy convenience foods. I eat a lot of bananas.

The Geodon is funky - I have to take it twice/day and I have to take it with food. Supposedly 500 calories, and I rarely consume that much at once... let alone at 9pm when I take my bedtime meds. That's part of why pushing my bedtime later is such a pain - it means taking the meds later and that means eating really late.

Link | Leave a comment | Share

May. 23rd, 2013 | 08:18 am

Bob is in marketing/advertising - so he gets lots of freebies and discounts. SO... it looks like we're getting cable because he can get internet+basic cable for $10 more than we're currently paying for internet. We're just getting the most basic package, so it really only adds about 10 channels we'll actually watch, but I'll be glad to have Comedy Central and Food Network. The other stuff - History and Discovery and A&E ain't what they used to be, but it still seems like some fun fill-up-the-time programming... River Monsters? I'm SO there.

Maybe it will help fill in the time during the day while I wait until I can get my eyes fixed.

My fatigue issues seems to be evening out a little. I'm getting better sleep at night - I'm still waking up a few times, and then I'm wide awake before 5am. My ability to nap is spotty, but on the days I can get 2-3 hours, I can actually be pleasant and alert by the time Bob gets home from work. No matter what, though, I'm passed out by 10pm. I wish I could shift that to around midnight, and then be able to sleep until 6 or 7.

In even more mundane news, I'm finally getting a new computer chair. The one I have was a hand-me-down and it's probably 15 years old. The back is broken. It will suddenly sink if I shift position. I have to sit leaning forward just so it doesn't fall over. I found one at Target for 1/2 price, free shipping, plus another 5% off (thank you Target Red Card). I'm stupid excited about this chair!! I spend a lot of time at my computer and it will make all the difference to not be slouching. Also, the new chair has arm rests, so I'll be able to use it for stitching.

Link | Leave a comment | Share

May. 21st, 2013 | 04:35 pm

Decent mental health care is proving impossible to find. UIC has a 3 month waiting list for meds and no time frame for therapy, so I have to go back to the place that sucks. Except that they closed my case so now there's a hassle getting them to take me back.

All of this blows chunks.

My meds are delayed again this month, too.

I try to get better on my own, and I have, but I've reached a limit of what I can do on my own or without meds. Especially with all the other health stuff and medications messing up my equilibrium.

I wish I could afford the switch to private insurance. Maybe by next year.

Link | Leave a comment {2} | Share

May. 21st, 2013 | 08:50 am

ha - I think I'm so tough. Yesterday's walk led to a 14 hour "nap" (with a few breaks, but mostly I was asleep from 2pm until 4am).

And I'm still tired and I haven't even taken the drool-on-myself meds yet.

It is incidents like this one that really drive it home that I am no longer in any position to be pregnant or be a mother to an infant or young child. I just don't have the energy or reserves. I keep thinking - remission... but I think I am in the closest thing to remission I'm going to get because damage has been done that remission doesn't repair.

Instead of feeling hopeful at the thought of a baby, I feel something akin to dread. Where I am today, there's no way I am up to the task. Add in that I wouldn't be able to do it the way I think is right (likely would need to bottle feed because of the meds I take, and co-sleeping would be really difficult)... and homeschooling...

It's a constant theme of this journal - me getting used to new limitations, and trying to adjust my expectations and lifestyle to meet my abilities. But I've become practically useless. I can't even get dishes clean because I can't see the bottom of glasses with any clarity. I can do laundry. I can vacuum but it exhausts me. I should dust but OMG do I hate that task. Sometimes I can cook, but my appetite is gone so I am uninspired.

I know it will get a lot better when I can see again. I'll be able to crochet and I have ideas for salable pieces. Large scale doilies as area rugs and couch throws. Felted floor mats. I want to dye/paint fabric again, too. I look forward to being able to use my sewing machine without fearing that I'll stitch through my finger.

In the meantime, I'm boring and bored. I'm almost grateful for days like yesterday, where I got a few things done (doctor and dishes) and then slept the rest of it.

How does TV work for some people? It's all so stupid to me, especially the crap that is on during the day. I just need to pass the time somehow... October seems far away right now. I see the strabissmus doc next week and I'm going to really push for an earlier date for the first surgery.

Link | Leave a comment | Share

May. 20th, 2013 | 12:44 pm

I walked home from the train today - about 1.25 miles and several major streets to cross. It was overcast, so the sun didn't zap me too much. I was wobbly, but extra careful. It made me sorta tired, and I'm sure I'll pass out early tonight, but I'm glad I pushed myself a little. I miss moving around and I'm just not one to exercise at home for the sake of it (ok, I do squats and stretches, but that's it).

Link | Leave a comment {2} | Share

May. 20th, 2013 | 07:34 am

I'm still reeling from the events of last month and Bob's job. It seemed inevitable that he'd be out of work, and instead he's improved his situation and made his future at the company *more* secure.

After years of this sort of thing never going our way, after years of wondering how we're going to keep the lights on, we actually have a small savings and enough money for stuff like socks.

I didn't realize the toll of living broke until I was faced with it again.

We live cheaply. No car, no cable TV, basic internet, basic phone. We eat fast food once/wk and have a special meal out once/mo (but we don't get appetizers or drinks but we sometimes share a dessert). When I buy clothing, it's clearance rack with an additional discount coupon or something like that. I indulge in quality coffee beans (but it's still 365 brand, $15/24oz). I indulge in quality cheddar cheese. I'll buy fruit out of season (melon). But I cut my own hair, don't wear makeup or spend money on "beauty" crap and I generally have one pair of shoes for winter and one for summer (with a few pairs of heels that sit around just in case).

Anyway, point being the thought of going from frugal to brokeass really messed with my head and I am so thankful that we can continue to afford our simple life.

Link | Leave a comment | Share

May. 14th, 2013 | 02:04 pm

Bob's new supervisor told him he was "sent from Heaven". He finished up a project that had been a thorn in her side in an afternoon - when she thought it would take him most of the week. He's an Excel ***expert***.

More proof that the other team was nutzo.

Link | Leave a comment | Share

May. 12th, 2013 | 06:24 am

Bob being back in a work position where he can flourish means SO much. There was a lot of schmoozing and wooing and networking with the previous situation, and now he's dealing with numbers and negotiations. A much better fit.

It means so much to me because Bob *needs* to get something from his job, something positive, something that makes him feel like he's succeeding.

It's hard at home in the sense that he can't do anything to make me better. When I had the day in the sun about a week ago, and he watched how it wiped me out for days, he said he finally realized something - I spend all day trying to rest so that I can do just a few little things around the house and be happy for him when he gets home.

That made him sad for me. And just sad in general. My persistent fatigue limits us so much. Bob is as helpless to it as I am, and so feeling something positive from his work is mentally/psychologically necessary. Besides that what he was going through was being overworked, publicly belittled and being told it was his problem and if he didn't figure it out he was out of a job.

I am SO thankful to the 2 people who gave Bob glowing recommendations. He earned them.

Link | Leave a comment | Share

May. 10th, 2013 | 06:16 am

Bob's first day went really well. It's a totally different atmosphere than Team Toxic, and back to what he had become accustomed within his company.

And my suspicions were correct. When Bob's new head boss asked around about Bob, before he decided to take him on the team, he got 2 recommendations so positive (and from trusted people) that the Director decided he didn't even need to interview Bob first. AND when told that Bob needs a flexible schedule, he was fine with it and said "just issue him a laptop". Which was all we wanted in the first place. But now he gets to have that AND and better team to work on.

Plus, this position has major job security. It's not tied to one client, so the loss of one client wouldn't put Bob on the chopping block.

He came home and LAUGHED. We watched TV and he actually laughed his funny snorty HAHAHA laugh. First time in a month.

He ran into a few people from Team Toxic but didn't share any information (and they didn't ask). He said it wasn't awkward because they looked a wreck and he was happy as a clam.

Link | Leave a comment {2} | Share

May. 9th, 2013 | 07:25 am

The relief - wow. Especially because this was not a good time for money to be extra super tight.

Last week I had 2 doc appts at different locations, and I took the bus with Bob's accompaniment. It was a very sunny day. All-in-all, I walked about 2 miles in the sun. It knocked me out for 4 days. By the time I got home, I sat down and couldn't move.

Then, I had 2 different doctors (GP and eye doc) tell me I shouldn't travel alone, especially if crossing busy streets is involved. It's not just my eyesight - it's my balance - and the impairment of both means I keep tripping and knocking into things. I still have good core strength, so I don't actually fall all the way down that often, but I teeter and misjudge distances almost every time I stand up. I need to be able to feel my way around. Walking outside is difficult because I have to monitor the walking surface AND where I am going.

Anyway, it all adds up to me needing to get a ride to all doctors appointments. When I take a taxi, it ends up $20 there and back. I'm down to one appt/wk for the next 2 months, so it's a do-able amount of money if we just cut back a little on lazy eating.

Link | Leave a comment | Share

May. 8th, 2013 | 02:15 pm

I suspect that in their investigation of Bob's prior work experience, they encountered his former supervisor. This supervisor really liked Bob, thought he was a great worker, gave him great reviews, and has since been promoted to a super VIP position.

I say this because today, after wrangling for 2 weeks and them acting like nothing is going to change overnight, he was told he has a new position, with a new team, with new hours, with a laptop to take home, and with a clean record. His time with the old team won't be reflected in any reviews and the new team won't know anything of what went down. He's back at the old building, so the gossip won't get very far - especially because all salient details are locked in the FMLA vault and the only thing people know is Bob has been out on sick leave.

That things are happening this quickly... it means a lot. Most important is that Bob is starting fresh, and in a job that is way way way more suited to our needs and his talents. His job is not in jeopardy, and he's already familiar with most of the details of his new position so it's just a matter of getting it formatted the right way.

I am so glad we fought this fight and I am so proud of Bob that he stuck to his guns and didn't let a shitty supervisor fuck his career and homelife. Now he's back in the building where everyone plays nicely and acting otherwise is seen as uncivilized. Back to where work/home life balance isn't just BS, but allowed and even encouraged.

I had a feeling it would work out because Bob's record with the company so far is SO good, and the FMLA puts restrictions on them they can't get around. WA FREAKING HOO

Link | Leave a comment {2} | Share

May. 7th, 2013 | 05:20 pm

Thank goodness for Bob's doctor. She knows Bob, has a several year history with him to back her up, and knows the FMLA law inside out. Bob's job is trying to wiggle around stuff, and she's re-written her release, in addition to the FMLA paperwork, to make it clear that the condition of his return to work is a 40-hour work week. And that's totally within the FMLA, but because Bob's position is, amazingly, *exempt*, their legal department is waffling. They could solve the problem by issuing Bob a laptop and letting him put in the extra time at home - which he has offered, and which has been done for other people. But he's new to the team and position, so it essentially moves him up the list without the seniority, and that's a whole other problem when it comes to team morale.

They asked if he'd be willing to be moved, and he gave a resounding YES and his doctor also included language which supported this option. But it's a behemoth of a company and things like transfers don't happen quickly - there are usually several ranks of interviews even for the most basic positions.

So we still do not know what will happen in the short term except that they can't fire him yet. They can give him a shitty performance review in June/July, but what he's asking for and what his and my doctors support is well within what is covered by FMLA and they can't just let him go for asking. And if they do, we'll fight it while he looks for other work. Where he is at, his benefits are great but his pay is low... so replacing his salary won't be too hard, and if it means less stress then so be it when it comes to paid time off. And nearly all other jobs would include overtime, so if he was pulling more than 40 hrs/wk, there would be some sort of return that could be used to help with my care (like taxis to doctors appointments).

Link | Leave a comment | Share

May. 2nd, 2013 | 04:54 am

When Bob got promoted, he moved to a different location - a smaller company that was swallowed by the huge multi-national conglomerate that employs Bob. The atmosphere there is far more "small business" and they don't really pay heed to the culture that the rest of the company aspires to achieve.

Last year I had 3 major surgeries, and it was never a problem for Bob to take time (the paid time due to him) in order to take care of me or help get me transported. His new supervisor gets pissed when he stops at Walgreen's for a prescription DURING HIS LUNCH BREAK (which is supposed to be an hour).

This year, when I had my ass bandage that needed changing, the same week his team was pulling all-nighters. He had to leave. I had an ASS bandage. It was imperative that it get changed because it went all the way to my butthole and, well, it needed regular cleaning/changing for sanitary purposes. Ever since then, his immediate supervisor has zeroed in on him. She's 27, lives for work, and has no understanding at all. The entire team is like that. The night Bob tried to explain that he has no choice but to leave, one person told him to stop talking because he's depressing her and another asked him if he would've married me if he had known about my future health problems. Exactly the opposite of when he was working in the main building, where the motto is "Family first".

There's more to it - Bob's supervisor crossed many lines and is in harassment territory, and Bob's job was/is in jeopardy because she's responsible for his review.

All of the stress cracked Bob - his anxiety levels soared and he almost went to the ER because he was worried about doing something impulsive.

Which has all led to a double FMLA defense and Bob's psychiatrist actually using the words hostile work environment and workplace harassment in her paperwork. Mine has every line scribbled in full.

We've protected ourselves for now, but this probably limits Bob's future at this company. Right now that is not a concern, though. He's thinking of going back to school part time for a CS degree, and that can be our long-term plan. He put his resume together just in case all of this turns out badly sooner than that.

All Bob wants is a 40-hour work week, and the ability to take his paid time off without a hassle. It seems insane that we need to fill out paperwork ON MAY DAY for shit like this.

Link | Leave a comment {3} | Share