In My Absence: Part III

The Sky Is the Limit, or the amount your body and mind can take, given disease and sleep deprivation.

So I’ve been trying to keep it together and so far so good.  I’m tired and my skin is showing the results of drinking Rockstar, but otherwise, I’m doing well.

I guess my main complaint would be that I don’t feel as competent as I’d like in any area of my life right now.  There’s a point in any job or class that you want to feel like things are just smooth sailing.  And for me, even though it’s getting close to smooth sailing, I’m still on bumpy turf.  This morning for instance, I’m working at Gnomon School of Visual Effects.  The person that trains me is out for the day.  So I’m having to ask everyone else how to do everything.  Granted, I’m learning way more this way by doing, but I’d rather it be that I just felt comfortable, you know?  Even answering the phone, because I haven’t done it all that much, still feels awkward.

Zbrush class is starting to get a little more fun now that I know my way around the program a little bit better.  At the same token however, it still feels foreign and I have to re-read my notes and google questions that I have for most things with the program.  I’m also having to watch Zbrush tutorials for refreshing.  But I’m loving the program and just wish all I had to do was live and breath Zbrush for a while.  This weekend I’m going to give my 3D character my all since mid-terms are coming up.  Depending on how it goes, I may post it.  :)

The bowling alley is another story.  I am getting better at it but boy is it hard work.  I never realized that working there would be so tough.  I really thought that I’d have very little to do.  So I’d rather have it be tough and busy so that I actually make money than have me just standing around.  Time goes faster when you’re busy too.  On Mondays I wait on Leagues back to back.  I don’t know how many leagues I wait on, but I have tables too.  I’m guessing since I have 10 lanes and each lane has around 5 people, that I’m potentially waiting on 50 people, give or take because not everyone orders.  But if you can imagine, 50 people, plus other tables, it can get quite busy sometimes.  And I wait on one league and then another.  So I’m constantly putting in orders, memorizing names and drinks.  It’s much more difficult that I could have ever imagined.  But I am enjoying it now that I’m getting to know people and their drinks a little bit better.  On Tuesdays, the other server can’t come in until 7.  So from 5 till 7 I wait on 24 lanes, one of them being a league.  Sometimes it’s not as difficult as it sounds and sometimes it’s REALLY difficult.  This past Tuesday took the cake.  I was exhausted!  My feet simply couldn’t move fast enough for everyone’s orders.

But what else is new?  Well, I’ve joined twitter officially.  And that means I’m posting frequently.  I am in charge of marketing the studio that I work for.  And this past week I’ve decided to take the studio into twitter world.  And doing so, I realized that I needed to tweet more often too.  So I’m double tweeting…  tweeting for me and tweeting for the studio.  I like it,but it’s a whole new world that I know nothing about.

And of course, keeping everything straight in my head is a challenge.  I find that answering the phone for Gnomon School is probably the most difficult, given that for the past almost 5 years, I’ve been answering the phone (and still do) for S4 Studios.  So every time I pick up that phone, my head literally says, “‘Don’t say S4 Studios’, Say ‘good morning gnomon'”  Since I’m only at Gnomon two days a week and I don’t always answer the phone, it’s something I haven’t been able to turn into a habit yet.  You would think out of everything I do, this would be the easiest task, but it’s quite the opposite.  OMG and transferring calls is another task I’m just not used to.  Oh well, I will get it eventually.  I was told I won’t be feeling comfortable with all the ins and outs of this internship until the second semester.

With all of that, I’ve been debating whether I should do a couple more things.  Like I should add anything more to my schedule, right?  Well, the two things are these.  First, I was asked if I’d like to work a Sunday bar-tending shift for now on.  I told the manager that I would have to think about it.  Normally I would say no.  But in reality, I think bar-tending is a pretty good skill to learn for living in Los Angeles as a female.  Female bartenders can make a lot of money at some places.  And although I probably wouldn’t make all that much here, it would give me a chance to really learn how to bar-tend.  So I’m leaning towards asking if I can alternate Sundays, that way every other Sunday I will have a break.  That’s what I think I’ve decided.  Stay tuned and I’ll let you know how that goes.

The other thing I’ve been debating is becoming a vendor at Venice Beach.  I was thinking of doing portrait sketches, as well as selling paintings.  The only problem here is that you have to be there by 5 a.m.  Any later than that, and there’s no chance of getting a spot.  I’ve heard that the money potential is fantastic.  Not only that, but it would give me a day at the beach, more exposure as an artist, more practice as an artist, and it would help simply get my name and S4 Studio’s name out there.  But late nights plus a 5 am. morning Sat and/or Sunday would be really difficult.  So I’m having a tough time trying to figure out how to wing it.  I currently have all the supplies ready to go.  So I’m prepared to do it, I just have to try.  Stay tuned and I’ll let you know if I give that a shot this weekend.

Can my plate be more full?  Probably not but don’t freak out.  I’ve always been this way.  Having RA has really slowed me down, or at least it has made me slow down.  I’m finally getting back to feeling like my normal self again, grabbing the bull by its horns and going for it.  For the past five years I’ve worked really hard at finding the answers for my RA.  I won’t say that I’ve found the answers exactly, but I will say that after all these years of research, my daily supplement routine has finally made it possible that I can do what I’m doing now.  I wish you all the best success that life has to offer.  Thank you for your support!

Oh and one more thing!  Wish me luck on getting the RA scholarship that I’m hoping for, from http://reachbeyondra.com  I hope they give it to me so I can pursue 3D animation and modeling with a vengeance!

In My Absense

I have a friend who asked that I just write something every now and then.  In fact, he requested that it be a little more personal because the other articles make his head spin.  I explained to him that my most popular post was “Polypodium Leucotomos” for a while, so you see, not everyone wants to hear something personal.  After-all, I’m not Rheumatoid Arthritis Guy.. :)

There is so much I could talk about, but where to begin?  First, it’s been a busy Holiday season for me.  Though I work part-time, I have a plethora of to-do’s and so much is changing in my life.  I’m in the process of moving.  Of course, I don’t know where I’m moving to.  My husband got a job in another town where I will commute a 3-hour drive to see him.  It was very last minute, but absolutely welcomed with this economy.  Because our apartment was too expensive for just one person to live, I was forced to move out and I am currently staying with a friend while looking for a different living arrangement.  My husband found a nice town house, much nicer than expected because the town he’s now living in is very affordable.  It’s definitely an upgrade compared to the smaller spaces I’m accustomed to in L.A.  So at least on the weekends, if I survive the monotony of the drive through the grape-vine, I will stay in our nice place.  Of course there are drawbacks to living in a small town, or at least for me there are.  I grew up in a very small town until I was 18 and then I moved to yet another small town, near where my husband will be until I was in my late 20’s.  I haven’t experienced much and I certainly haven’t traveled, so I just can’t go back to the simple life at this time.  I’d rather deal with the traffic and people, where communities are a mixture of all races and beliefs and I can have a late night dinner if I want to.  A city has 24 hour access and boundless options.  This small town however, is literally asleep in the early evening, businesses close down and there isn’t a car on the road past 10.  Even on New Year’s, I felt like we were the only car traveling down extra wide roads that probably see more trucks than economy sized vehicles.  To some it is heaven, but for me, for right now, it’s just not what I want.

For a week, my husband had been visiting this small town, looking for places to live and running errands related to his new teaching job, all the while I’ve been frantically trying to get all of my stuff done.  Though we’ve successfully moved out and he’s successfully moved in, all of that wasn’t even on my first priority list.  One of the things that I accomplished in January was starting and finishing a painting.  It is not, (ahem), hate to say it, one of my best pieces.  I struggled on this one and I don’t know why.  I even started over at one point in time.  I’m sure to many people, it’s a great painting, but I wanted it to be one of my best.  It’s of a dog, a very cute dog, but aren’t they all cute?  How can I mess up a dog, right?  I wouldn’t call it messing up per se, I would call it… oh I don’t know, just not my best…I guess there’s no other words that I can think of to describe it.  Luckily my customer received the painting and fell in love with it.  Even if I am my worst critic, I am glad that someone was happy. :)

I was relieved when the painting arrived safe and on time and I got word that the customer loved it.  Getting that off my hands was 1st on my list and caused me a lot of stress, but now that it was over, it was time to put all of my focus into packing.  On one of my frantic packing nights, I packed boxes past 2am.  Then I got up at 7 am to get some reserved boxes from a grocery store.  The next night I slept for one hour.  I packed all night long.  Yes, I know I have Rheumatoid Arthritis.  But my husband was going to be starting his new teaching job in less than two weeks, and I was going out of town, and he was out of town… I just had to make sure that before I left for Sacramento to visit my mom, that things were in order.  I’m not sure if you would call this overkill, controlling, or smart to make sure that most everything was packed, but that’s what I did.  I kept waiting for things to feel “mostly complete” and unfortunately, it took all night and all morning to give me that feeling.  I felt completely exhausted from all the packing and lifting.  I had bruises and tight muscles, along with extra painful joints for the next week, but what can I say, I have a knack for packing.  And so I felt extra obligated to pack things right, after all, I was the one that possessed the skills!  After my hour of sleep, my friend called me and we then drove for 6 hours to Sacramento.  Despite my fatigue, I had a great time and enjoyed the hours of resting in the car.

Sacramento was for the most part relaxing, except that my mom keeps things much cooler than I’m used to.  No matter what I did, I couldn’t seem to get warm.  One of the interesting things of having autoimmune diseases, is the constant quest to get things “right” with your own body.  It’s like you’re on a treasure hunt 24-7, only the goal is to have fleeting moments of feeling normal again.  While many people leave it up to their doctors, I leave it up to myself to figure things out.  I use intuition, I read as much as I have time for, and I experiment in the safest route that I can find.

Change for me is big right now. Not only am I moving..and I don’t know where, but I’m also going to be starting up a class to improve my animation abilities starting on the 14th.  The class will average about 12 hours of homework per week but I’m sure I’ll be doing more.  The program (Maya) is intense and I look forward to broadening my skills.  I’ll also be spending extra hours in the lab, trying to learn other programs while I have DVDs and computer technology at my fingertips.  I’m entering a scholarship and hoping that I get some help with my education, so that I can continue taking classes every ten weeks at night or on weekends.  Wish me luck on that-the essay, application and recommendation letters are due in March!  Can we say STRESS??

My RA has been doing great.  I take a lot of pills, each doing their own thing to my body and keeping me in check.  I have been taking prednisone… 2.5mg regularly.  Back when I took the turmeric placebo and got really sick, I’ve been on prednisone since.  After reading about a new time-released prednisone, that releases 4 hours after you take it, it dawned on me that I should test what prednisone would do to me in a small enough dose at night, so it won’t keep me awake.  I figured out through trial and error that 2.5mg was a good dose.  I could even go up to 3.5 without any problems, but the smaller the amount, the better.  And wow, what a difference!  If I took that dose during the daytime, I wouldn’t notice anything.  In fact, I’d have to take 10mg a day to do what 2.5mg does for me at night.  Somehow, taking it at night really makes my hands feel nearly normal again.  Although I am well aware of the damages that may be occurring from the long term prednisone use, I am utterly gleeful that I can make fairly tight fists every day.  Long term prednisone use at such a small dose probably isn’t doing too much, but it could potentially damage eyes, cause calcium loss and deterioration to my bones, even if it is only slowly over time.  Still, it’s about quality of life, not quantity.

Now that the holiday “break” is over, I’m relieved.  I had a lot of time off, yet it felt like a whirlwind of constant going and constant work.  Even my mind felt like it was going to explode from all the stress, along with not really knowing what day it was anymore.  I am glad to finally be doing a little less, and to be on a path that feels like a positive direction.  I’m glad all the packing, the driving and the unpacking is over.  I’ve had many other adventures and stories I’d love to share, of what I’ve done in my absence.  But alas, another day, another story.  I hope to keep up better with this blog this coming new year and I have other resolutions I hope to stick with as well.  I’d like to get thinner, fitter, just feel better about myself and be in a real routine of working out.  I’d like to write more, paint more, and just get more projects finished.  And I would love to get better about taking all the pills I need to take on a daily basis.  Because I feel pretty good on fewer pills, I have a tendency to take less than I should.  I know that if I took everything, I’d feel fabulous.  But it can definitely be hard to stick to a real regimen.  So hopefully this year will be a new year of wonderful change.  And I hope to share these wonderful changes with all my listeners, my friends and family, who have emotionally supported me through some of my toughest moments.  Thank you all, I am forever grateful and happy New Year!

When your disease gets you down

Pain and Depression can go hand in hand

When it comes to chronic disease, we all have setbacks. Since last Wednesday I’ve been experiencing a flare. It’s honestly the first that I’ve had in a very long time that was quite this bad. It could be due to stress or medications or both. Compared to how I used to feel before alternative medications, this flare is a breeze. I can still lift my shoulders, tie my shoes and walk without wincing. Flares can vary so you never know what you’re going to get. For me, having Rheumatoid Arthritis can sometimes feel less of a joint disease and more of a systemic disease. For those of you that don’t know, RA can affect the organs just as much as the joints and it can mimic other diseases like Lupus.  I can see what’s happening to my joints….my fingers get more swollen than usual, but when it comes to my organs I can only guess what’s happening.

These last few days I’ve been getting up in the morning and feeling like I’ve smoked a pack of cigarettes. I don’t even know what that would feel like but I’m guessing this feeling is similar. There’s a sense of congestion and heaviness, accompanied with some discomfort to breathing especially if I bend over and especially when I first get up. Just like my joints, this feeling lessens as the day goes on. There are times that it feels like my heart is beating harder or having trouble….could it be Pericarditis? I simply don’t know. And there are moments when my sides have dull aches as if someing inside me is a bit more swollen than normal. Times like these I can only guess what’s going on. Without insurance, there is no way of knowing without going to the doctor and paying an arm and a leg.  Seeing that I can barely afford my supplements on my own, I simply can’t afford a doctor’s visit. Besides, I know the answer to the problem…..reduce the inflammation in my body and everything will be solved, including my sour mood.

If only it were that easy. I could take some Prednisone which sits in my cupboard. But after a year of trying to get off that stuff, no thanks. I’d rather not feel even more moody than I already feel which is what Prednisone would do to me.  Flares are bound to happen from time to time. I have been lucky to avoid having a flare for the past six months or so. I’m also lucky that this one isn’t all that bad. When I did have a doctor I had the same complaints: chest pain and congestion, rib pain, organ pain, and just about everything and everywhere hurt. Knowing that I have the least amount of pains now that I don’t have a doctor, it makes it all the more simpler to not worry and just keep going on with my life. A flare will eventually subside.

Extreme tiredness is another problem that accompanies most chronic diseases. It doesn’t seem to matter how many hours of sleep I get, I’m still tired. I can say however, the more I sleep, generally the less pain I wake up with. Depression is the other thing that pulls me down. People close to me try to perk me up and they say, “Don’t let yourself get depressed.” It’s hard to have that kind of self control. You go to lift something and you realize you don’t have the strength. You plan a day of activities to realize you don’t have the energy. You have aches and pains and have no way of relieving them. People want to spend time with you but you don’t want to spend time with them…..you are at a loss for words and feel like you might fall asleep in their presence. You find yourself stuttering. You spend more than your share of time in the bathroom to accomplish nothing. (Inflammation of the intestines can make you very constipated). People cook you food and you barely eat. I think faking the way I really feel takes its toll and adds to the depression. People ask on the phone, “How are you doing?” You answer, “Fine and how are you?” But the real answer would depress other people. “I feel extremely tired and sad that my weekend was taken away from me.” People don’t want to hear that so you hold it in and take one for the team, the chronically ill team that is.

What’s it like to have a chronic disease? Well, honestly it really takes it’s toll on your body and spirit,  especially when you’re going through a flare. The pain, the medications, the tiredness….none of it is easy. I can say that since I’ve been treating myself with alternative medications I feel WAY better than before, when I was on chemotherapy drugs and steroids. But even this path isn’t easy for reasons like expense, feeling alone on this particular path, and the amount of pills I have to take can be annoying and tiring.

At first I thought twice about writing an entry like this. After all, it can make people feel uncomfortable. But then I thought, why can’t I just be honest? Why spare other people and hold in these emotions?  Is this too much information? Perhaps it is but I don’t care. At least you know when you come to my blog you’ll get the truth and the real me.  Thanks to all out there, who visit.  You are my support and I appreciate you.

Sick Days, No thanks!!

Vomiting is one of the many side effects of Methotrexate

Being part of a support group, I check daily posts written by fellow RA sufferers. In a recent post called “MTX questions” a person asked what others do in regards to taking their MTX, (Methotrexate). Do they take it Friday and feel sick on Saturday or do they take it Sunday and feel horrible for Monday? This is a common question and it gets addressed often. For those of you that don’t know, Methotrexate is a chemotherapy drug, also known as a DMARD and it works by suppressing the immune system. For those of us with an autoimmune disease, the common thought is that an autoimmune disease means an overactive immune system. I have found information that states autoimmune diseases are simply the body confusing healthy tissue for non-healthy tissue, meaning it’s not a system that’s overactive as so much it is an immune system that isn’t working correctly. Suppressing the immune system does not make it work correctly. Instead, it keeps the body from destroying itself, kind of. Methotrexate may cause damage to the liver, intestines and sometimes the lungs, just to name a few. Although it doesn’t seem like methotrexate is a good option, doctors don’t present many other options when you get diagnosed with RA. And you can’t go on living with uncontrollable inflammation. Inflammation in itself, if left uncontrolled can cause cancer, intestinal damage, organ damage, other diseases and with RA will most likely cause joint erosion and deformation. So although taking a toxic drug like methotrexate seems out of the question, not taking it is just as scary.

It’s no wonder I kept searching for alternative options. I was tired of dreading my weekends. On Monday and Tuesday I still felt like I was a little bit “sick” from the methotrexate. If you haven’t taken this drug and it hits you hard like it did with me, this is what I experienced: The next morning after taking methotrexate I would feel more swollen, more painful and more stiff. My kidney area always felt like it had been kicked in the night and this would last until later in the evening. I would feel extremely fatigued and as if I had slept on rocks. Imagine you haven’t slept in 2 days. That’s how fatigued I felt. Or imagine what the flue feels like. That’s exactly how it was, resting both Saturday and Sunday so I could prepare for the following work week. Even running a low grade temperature wasn’t out of the question, of course this could have just been my RA at work. My hair would always fall out in mass amounts on Saturday and it would lessen as time went by. My eyes would be somewhat bloodshot and I would generally feel less hungry than normal for a few days. I wouldn’t exercise over the weekends. Instead, I would try and “recover” until the week started again and try to summon up energy to get myself to the gym after a few days of shaking off the methotrexate side effects. Heck, I was one of the lucky ones that didn’t throw up after taking methotrexate, a common side effect. As time went on having Rheumatoid Arthritis, I found myself becoming weaker and weaker. Workouts were less effective. My resistance level became less and less on the eliptical machine. I no longer did weights because the swelling of my wrists and fingers made it impossible. I continued to at least work hard at strengthening my knee joints. I figured that was the most important-being able to walk, so I made it my top priority.

When I finally freed myself of the methotrexate hangover, I felt like I was on the right path. And speaking of hangover, being on methotrexate meant you couldn’t drink a drop of alcohol because the drug itself does a # all on it’s own to your liver. Being off the drug meant I could drink again. Though I know alcohol is a poison, I tested my theory out on my own liver….just how bad can it be compared to methotexate? I was getting monthly blood tests because doctors have to keep track of how your liver is functioning and I would closely monitor my tests. At one point in time, just 10mg of methotrexate (a very small dose) elevated my liver enzymes. Yet when I went off this drug, one weekend I purged on alcohol. I came in for my test and didn’t tell them I was off of methotrexate. When the results came in, my liver was functioning better than it ever had while I was on methotrexate. Go figure!!

So truly, the reality is methotrexate is hard on your body. For those of you that take it, I feel for you. If your side effects are bad, giving up your weekends to a drug is a horrible thing to experience. I wish you all the best of luck in your journey with an autoimmune disease, or if you know someone who has an autoimmune disease please be compassionate as I’m sure they could use the support.