Feeling off.

I've been sick, and fatigued too, but I think that partly had to due with being subconsciously aware of this date. Why do I feel so stupid posting about Gabriel? Why does it feel like I'm obsessing? Why does it feel like I'm overdramatising it? He would have been a year and a half old today. That means something. I don't know. I hate when I feel like this.

My gallon pin!

I had talked to Dr. Kingsley about donating blood the last time I saw him, and he said there wasn't a problem, so off I went to give the gift of life.

I love donating blood. I wish I could do it every week. I've given single and double pints, and I've even tried apheresis but my vein collapsed. I mean aside from knowing you're helping someone, there's free juice and cookies, and the neon-bright bandage you get to wear is so damn sexy.

I went through my interview and all went well; I even told them about the APS but the Kingsley had said it was fine. So I get to the machine and twice I clotted it up. They actually told me to take an aspirin before I donate next time. I found that hilarious. I wonder if that's something I should mention at my next appointment? Either way, aside from juice and cookies, I got my gallon pin. That so rocks: a gallon of my blood is flowing in someone else's circulatory system. I love it.

Nauseated and exhausted.

Last President's Day I had to work at Cherry, for Red Rock. It was great, since I got double-time...in fact, I got paid double-time for the whole weekend, which amounted to an excellent paycheck. But I thought of it as a milestone: I'd just gone back to the field, and was thinking about what next President's Day would bring.

Too bad I'm too horrendously ill this year to enjoy it. Didn't get paid for yesterday (being a union-sanctioned holiday) and had to take today off, which doubly-sucks since I had already RSVP'ed to a company dinner tonight, and I'll have to cancel. There's no way I can attend, I can't keep anything down for more than an hour. Not even Pepto, or water.

I'm halfway thinking it was because of the food at the shithole we went to when we met with Mada and his girl. It was a bar (and you all know my love for bar food), and the lights weren't really working, and it was just...not the greatest place, really. I like Mada's girlfriend; aside from liking dark chocolate, she prefers no ice in her drinks. Right on. But really, she seemed nice, and open, and real. And Mada was happy, which is all that really matters.

I got sick later that night. Mada got sick Monday, and Tannah today. The only think we had in common was the food at the bar. Ick. I'm never going there again.

Fear and Loafing in Las Vegas.

Interesting service at church...Corey Levitan of the Review-Journal appeared as a guest speaker. Every week he takes suggestions for a job he can take for a week, very much Des Bishop-style, really. This week, apparently he came as a pastor. He says he wrote to over 300 places of worship and he got only one reply back: that from Community Lutheran.
At the end he apologised and said he hopes he did it right, being that he was Jewish (though not practising). I think he did fine. He covered the material and made some good points. I think it's excellent that he can look beyond his own beliefs, as a person, and we can look beyond our own beliefs as a church. I hate that some think religion is like an exclusive club, and non-members are to be avoided. Once I see the story about his "job" as a pastor, I'll post the links.

And tonight Tannah and I are going to meet with Mada and his new girlfriend. So far she's fine by me: she likes dark chocolate. That's a plus right there.

Good advice.

[Note: I think the advice here could go for any kind of illness.]


Manage Your Job and an Autoimmune Disease
by Dan Woog
Monster Contributing Writer


Just as millions of Americans hit their stride professionally and personally, their bodies turn on them -- literally -- sometimes bringing careers to a screeching halt.


As many as 50 million Americans, or 20 percent of the population, must manage one of 80 serious, chronic diseases that cause the body's immune system to turn on itself, according to the American Autoimmune Related Diseases Association (AARDA). Among the most well-known conditions are lupus, rheumatoid arthritis, multiple sclerosis (MS) and scleroderma. Symptoms include numbness, fatigue, cognitive dysfunction, muscle tightening and cramping, dizziness, pain, visual disturbance, poor balance and clumsiness.


For unknown reasons, 75 percent of AI diseases occur in women, usually appearing during their childbearing years, according to the AARDA. Because this is also prime career-building time, managing these disorders can be particularly difficult. Together, these disorders represent the fourth-largest cause of disability among American women.


Many workers with autoimmune diseases retire prematurely. But health-oriented job counseling from professional rehabilitation counselors can help them keep working, according to Saralynn Allaire, research associate professor of medicine at Boston University and a specialist in AI work disabilities.


Accommodating an AI Disorder


Each state offers federally funded vocational rehabilitation programs, usually run through their education or health departments. These programs work with employers, but employees usually must initiate contact. Rehabilitation counselors prioritize an employee's health issues and help devise solutions. For example, if fatigue makes working an eight-hour day impossible, accommodations might include extra rest periods, reduced hours or the ability to work at home. Simple accommodations like a different keyboard or nonhandheld phone also can help.


Out-of-office issues affecting work, such as a long commute or family responsibilities, are also assessed. AI diseases often result in fatigue, so conserving energy is crucial. Workers with AI diseases can make life easier by getting household help, using convenience foods, commuting at off-peak hours or obtaining a handicap sticker for the car.


Allaire says professional rehabilitation counselors can also inform those with AI diseases about their rights under the Americans with Disabilities Act. Counselors can alert employees to resources such as the Job Accommodation Network and help workers ask for accommodations appropriately. And if employees can't make changes or long-term prospects appear poor, counselors can help them change positions or look for new work.


Flares, or sudden, severe onsets of AI disease-related symptoms, present a unique challenge. Allaire advises judicious use of your sick and vacation time. If you sense a flare coming on, take a day or two off to manage it early rather than waiting until you're in a full-blown episode. Some people think reducing stress helps ease or prevent flares, though there is no scientific evidence of this.


Should You Tell Your Employer?


An issue for workers with AI diseases, particularly women, is whether to disclose it to colleagues and employers. Rosalind Joffe, founder of CIcoach.com, a Boston-area firm that helps people with chronic illnesses thrive in the workplace, says that because most AI symptoms are invisible, others are often unaware you're suffering. "Illnesses that create severe fatigue or cognitive problems can feed into cultural stereotypes about women as workers," explains Joffe, who has MS. "That puts the burden of proof on the sick person, requiring a well-honed level of emotional intelligence and good communication skills."


Elisabeth Lanjuin, vice president of the Lupus Foundation of New England, urges workers with AI diseases to be cautious about disclosure. "People can't see fatigue, but even after disclosure, some people might think it's just an excuse for not working hard," she says. "In a perfect world, you'd disclose and your employer would accommodate, but that's not always the case. If you do disclose, be ready to provide your employer with educational resources."


How you approach your employer is key, says Joffe, particularly if you expect accommodations. "You have to think about what you want to say, how you want to say it and how you want others to respond," she says. "Unfortunately, the onus is on you to present your employer not with a ‘problem' but with a solution that is clearly in their best interest."

Belated V-Day.

Since I had class on actual Valentine's Day, we celebrated on Friday. Tannah's brother recommended Buca di Beppo, a place he'd taken his girl and really enjoyed. Having never been, we thought it was worth a try.

I know I've mentioned here a few times that I have an enduring love for Grey Goose. When I saw that the menu offered a cocktail called Cosmo Bella, made with Grey Goose L'Orange, I absolutely had to try it. And I'm glad I did, it was awesome. I forget what Tannah had, he didn't have anythign alcoholic though and that's likely why it slips my mind. Since it was a special dinner, we went for an appetizer of apple and gorgonzola salad, with candied walnuts. I had one much like it at Red Square, the Russian restaurant at Mandalay Bay a few years ago. I think it's still my favourite salad, ever. (And I make a mean salad.) We were adequately warned by the waiter that as this was a family restaurant, everything comes family-sized: each small entree serves two, and a large one serves four. There was no point ordering separately, so we compromised on a spaghetti and meatballs...these meatballs were the size of a man's fist. It was insane. We had plenty to take home with us, which is great...leftovers are exciting!

Honestly, I like Buca di Beppo...it's so vastly different than the run-of-the-mill Olive Garden or Macaroni Grill. And I like that my husband and I are open-minded enough to not stay in a rut, to try new things, to keep life fresh. It makes everything so much brighter.

VD (Not what you think you sicko.)

So it sucked, mostly because I had to go to school tonight. Which was worthless, no one did anything, we didn't study. In fact we collectively bashed some foremen (one in particular), watched some guy beat Super Mario 3 in eleven minutes, discussed VD and the art of tackling bushes...we kind of went over homework, in that I now know the diffference between AND and NAND and OR and NOR, but that's about it. Got a 92% on my last exam. Sweet.

New aspect of the trade.

Immersed a bit about programmable logic and motor controls, which is what we're doing in class but it's so completely different that what I'm used to, as far as the electrical trade is concerned. I'm used to solid wire, 4-square boxes, MC and PVC; here, it's stranded wire, DIN rail, rigid conduit, Rob-Roy...I could go on.

I'm learning but seriously, I feel like a first year all over again. Industrial work is not only different as far as material goes, but even the pace is different. It's not any more difficult, it's just something to which I've never been exposed. Frustrating.

Thursday!

Acme does payday on Thursdays, and since the WRF (Water Reclamation Facility, or "Shit Plant" as the guys like to call it) is right down the street from Sunset Station, alot of guys from the crew go to the Costa del Sol Oyster Bar there are grab dinner. (They also cash their checks at the casino cage but I'd rather just deposit mine in the bank...I've seen guys I work with lay down $100 for roulette or craps, or even video poker and lose it in fifteen minutes. I won't even tempt myself.)

So anyway, I decided to go today and lo and behold....it was closed for construction. Santi was devastated, he lives for Thursdays. It was my first time so I was dissapointed too, but I didn't know what I was missing, either.

The guys cashed their checks and we stood around the casino's center bar and had drinks while we tried to come up with a plan. Santi was buying drinks, so I had a Guinness. For some bizarre reason, they all told me Guinness was a "man's drink" and nearly every guy on the crew commented in surprise when they saw me with it. I don't get it. They said they all expected me to get a cocktail. I would have; I'm a die-hard fan for Grey Goose and cranberry, but a cocktail at a Station Casino would run upwards of $10, I'm sure. I really don't need it that badly.

We decided on Hooters. That was kind of a dissapointment in itself. I mean, it's bar food. It can't be that great. Sure the waitresses all wear little tiny shirts and such, and they all have nice bodies...but that's it. I'm paying neighbourhood grille prices for seedy bar food, just to see, well, hooters. Wasn't impressed.

The only thing that made it worthwhile was the dialogue between Neph and Santi over the girl serving our table. They kept trying to outdo one another in an effort to get her phone number. After we pooled our money for the meal, sant took it and said loudly to her, "I got it", implying he was paying for all of us. He even patted her hand as he gave it to her and said "There's a little something in there for you, too." We laughed, and Neph chimed in with, "Thanks, Dad", which got us laughing harder.

Maybe next Thursday I'll learn the joy of Costa del Sol's Linguine and Clams...

Full day and...

It's been a long time since I've participated in a wire pull. I think we had a few major ones as a first year, and a couple minor ones and the bowling alley at Sunset Station. So yeah, I'm not exactly a master. But then, a monkey can pull wire.

Nineteen 12-gauge wires in a two-inch pipe, 280-foot run. Not only must the wire reels be set up on jack stands, but everything must be labelled properly. The head has to be made up, and it's got to be strong, sturdy. Teams have to be coordinated: everyone must know their task, and we all had radios to communicate in case of a snag, lost wire, fallen reel...anything, really. We started initial set up right before break, and were ready to pull right before lunch...it took close to four hours to set up. Unbelievable. But if it needs to be done correctly, it takes time.

The funny part is that it took less than a half-hour to actually complete the pull. How's that for irony? (That's really usually how it goes, I think. But I always find it funny anyway.)

We heard about a few deaths at City Center today. Apparently carpenters were working on moving a form for a wwall, or maybe the wall itself. (Having not been there, I really don't know.) The foreman was called away from securing it, and I guess everyone thought it had been checked, so when the crane lifted it, it wound up falling and crushing two guys, killing them instantly, and critically injuring two others. I remember working on that kind of thing at the Wynn, as a second year, huddling as I worked, as if that would make me a smaller target if the crane dropped the wall being positioned only feet away from me. Crazy how that works.

Two happies!!

I went to see Kingsley again. I asked him about my films showing a discrepancy in white matter changes and he looked exasperated. (Luckily, not at me.) He said it's really impossible to say that, since the films weren't compared. He said before I allow Dr. Brown to test for MS, before I put myself through the hell of a spinal tap, insist the films be compared. He also said he doesn't think it's migraines or epilepsy at all, he thinks it's all related to the APS, and he wants to bring my case up to Hematology Board for review, to possibly have me put on Coumadin. I hope so; Coumadin would increase my risk with injury on the jobsite but if the rest of my issues clear up, it's worth it. I'll find out in May.

Also, I recieved a package from Aunt Debbie and Uncle Leroy in France! It made my day. Inside was a letter, a few Carambars, and three magazines to practice my reading comprehension: 20 Minutes, Métro and Courrier International. I keep meaning to send them goodies. I don't know if it slips my mind or what, exactly, but I really should. It's so awesome to gets packages in the mail. Maybe I should mail off my sister's too.

Discouraged and frustrated.

Firstly, I think going to a neurologist is a waste of time. Dr. Ginsburg didn't send my records to my hematologist (Dr. Kingsley) and even though I made the appointment today for the "specialised" neuro (Dr. Brown) on his behalf, he didn't send records there either. I made the appointment three months ago. It's like, what the fuck.

So this new neuro specialises in epilepsy. I said flat out that I didn't think I had epilepsy, and I told her my history and why I was there. The numbness, temporary blindness, all of it. And she said, "Well I don't know what it is, because some MRIs say there are white matter changes and some don't".

[Note: Dr. Kingsley says its from minor strokes. Dr. Ginsburg says it could be migraines or epilepsy...even though every test he's given for it has been negative. Dr. Brown says maybe multiple sclerosis, but MS is known to be the most often-used misdiagnosis for people with APS, my type of clotting problem.]

After taking my history down, Dr. Brown says, "Since Dr. Ginsburg didn't send your records I'll just assume he thinks you have epilepsy, because that's what I deal with." So she wants me to have an "ambulatory EEG", which is a very expensive (several thousand dollar) test that I'll have to miss work for. I really dont want to. It's such a waste. Why cant my physicians agree?

Dr. Kingsley was a little frustrated when I saw him last. Ginsburg hasdn't sent him any files, records, updates, nothing...he didn't even know I was still seeing a neurologist. Let alone two of them. And there's now muscle weakness that's seeming to worsen...I don't know. I'm so frustrated. I hope this test shows nothing so it's a big fucking waste of money and Dr. Ginsburg will finally get off the epilepsy deal.

I see Dr. Kingsley again Monday. I'll ask him why there are changes on some MRIs and not on others. I hope he knows. I hope I get a definite explanation. I'm just so sick of all this.