28 February 2009

Sleep + Robots + -1005

Last night I was really looking forward to sleep. All the "tough" decisions have been made. I have a plan. The plan is being put forth. So now it's time to sleep. I mean really sleep. No waking up at 3am thinking about health, work, anything. Just pure sleep.

But then the dreams started. And let's just say it was just as bad as being awake. The dreams were a surreal mix between work and life. Robots were sending error codes to my head, not just to my phone, so I was seeing error codes flash across my eyes and frantically trying to solve communication problems. I felt like I was living in a Dali painting, as the error codes floated by.

Thus the much needed rest, was interrupted.

At least it's the weekend and it should be a relaxing one at that!

27 February 2009

Girls Scouts




Momentarily sated stomach, followed by the need for more cookies.
This could be bad for the waist line or maybe me just doing my part to help the economy.

nom nom nom

26 February 2009

What's in a week?

A week ago today, I got news that rocked my world. In only a week, a very short week, I have started to come to terms with what this means for my life and that I have to start making tough decisions.

I never came out and said what I was diagnosed with last week. Mostly because I did not understand what was going on. So here it is, the short and sweet. I have:
  • Juvenile Rheumatoid Arthritis (and was diagnosed at the age of 3)
  • Lupus (officially diagnosed last thursday)
  • myopathy (officially diagnosed last thursday), which is a neuromuscular disease in which the muscle fibers do not function for any one of many reasons, resulting in muscular weakness. In my case, my immune system is compromised and is attacking good muscle tissue. Good news is that it is only affecting leg, arm, liver but not the kidney, lungs or heart. So it looks like we caught it early! YAY!
  • and some sort of thyroid issue (unofficially diagnosed last thursday), causing me to feel as if I am going through menopause. Hot/cold sweats are no fun!
With the JRA, I have lived through many a flare up and have functioned as a normal human being hiding the illness as best I could. There were days I had trouble walking, driving, using my upper body, but there was always a work around or maybe it just took me a bit longer. But let's just say I never let it be an excuse. I tried really hard to not let it prevent me from going to school, playing with friends, playing sports or working. I think mostly, that attitude was fostered by my parents and my brothers. They made sure I always felt normal, never felt left out and could try to be/do anything. Thanks fam! But with all of these new UNKNOWN, SCARY TO ME things going on, I am afraid that attitude may change. I mean, I am going to have to take days off for drug treatments and that scares me. I really do not want to GIVE IN to the illness. But maybe, just maybe, I just need to look at it in a new way.

The new drug regime:
  • high dose steroids - can you say side effects and its only been a week! Crazy hunger, random anger (but holding it in check), the shakes and today my hands swelled up, making it difficult to hold a pen. And I am going to be on this indefinitely...
  • aspirin - really not worried
  • plaquenil - been on before not worried
  • Rituxan - which is a drug primarily used for treating Non-Hodgkin's Lymphoma (NHL) and in smaller doses RA. This is the drug I am worried about. It targets the CD20-positive B-cells and is supposed to work well, if it works. It is a chimera antibody (both human and mouse) so there could be rejection issues. But it's still a scary treatment, where I have to go into an oncology clinic and get infused with the drug over a period of 6 hours. Good news, I only have to do this twice. Great news, if it works I will see results n 4-6 weeks!
So in a short week, I have "come to terms" with my illness, accepted an agressive drug treatment plan, made an appointment to find out what is with this thyroid problem, and have a scheduled appointment with an oncologist. This statement freaks me out, I have an oncologist. Weird. But these docs have been administering this drug for a while and they are good at what they do, so why settle?

There are still a million and one little details to figure out and organize, but I think that with this weeks progress, I may get a few hours of uninterrupted sleep tonight.


25 February 2009

What a difference a doctor makes...

The doctor's visit was awesome yesterday! I now understand what is going on within my body. I have not 1 chronic issue, but it looks like a total of 4 issues going on. It mostly makes sense. And I have a plan, that I can live with. The drug treatment plan was not my first choice, but looking at all the options available and how soon I could expect to see results, really narrowed my choices down.

I have also had to make the decision to tell work what is going on with me. That is easier than it sounds. It is really hard to admit to anyone, especially work (for me), that I am sick and going to have to take days off for treatments. I can still do my jub, but you know, you have to plan for the unknown. As I am not sure how my body will respond to treatments or in general how I will feel.

I just know that today, a few more things were checked off the "TO-DO" list, and that helps. It also is great to know that work is going to be supportive. As that takes a big weight off of me.

The silent illnesses are sometimes like dirty little secrets that can creep up on you. Sometimes it's easier not to share. Sometimes its better to just be open. I think now, I need to be open and honest, so that there are no more surprises. But with any illness, there will always be surprises.

23 February 2009

Breathing a Little Easier

What a crazy weekend! Between robots failing at work, trying to deal with all of this bizarre health news, not sleeping, and weird emotional turmoil that I am not typically used to. Plus being ripped off of all my meds to switch to a bunch of steroids, I have been a very unstable girl. I never really think of myself as unstable, but this past weekend has proved to me that I need a time out or at least part of me does.

After flipping out a bit at work on Saturday, I realized that I could not sit at work for 16 more hours when what I really needed was a day away from everything. A day to just be numb. It was very difficult for me to come to this decision, and prioritize me. But I did it. And maybe not in the best way, as I was completely irrational female by this point. I did call the person I have been working for and set some boundaries about work and stated that the data will not be generated on time, and that I was sick and needed a break, etc , etc. I wish to say I was strong and my rant was brief, but in all honesty, I do not remember much of the phone conversation nor much of Saturday. I am surprised that the work I did do on Saturday did not quite suck. And that the repercussions for not having the data in on time, are not that bad. I guess when you have instruments misbehaving people are understanding. Or maybe, just maybe, when you explain the limitations on the process, people are more understanding.

Whatever it is, I think I need to learn to set more appropriate boundaries. Boundaries that help make me a priority. So I started doing that a bit this weekend. I took a nap! And what a nap it was! And I watched great movies (ok bad movies, but I REALLY REALLY like bad movies) with great friends. And then I did nothing. A friend came over on Sunday and we did nothing but hang out and knit and watch a zombie flick and chat. And can I say my perfectly purply hands that have moments of going white and blue are perfect for zombie movies. Let us just say I know how they make zombie flesh, cuz I have it! And trust me, it is really not contagious (muahahaha or is it...) It really was perfect. No emotional outbursts, no overwhelming moments, no thoughts about "Oh God, what's next?!" or "What do I do now?!". I was calm and all was good.

Then the stress and worried thoughts came back in my sleep and I feel like I need a nap, but there is still so much to do. Today I apologized for my freak out call on saturday to the guy I am working with and without telling him what was going on, he understands and says work is work and you have to take care of yourself. And that set the tone for the day. Instead of stressing myself out more and searching out things on the internet, I made an appointment to see the doctor tomorrow and just ask all my questions face to face. And then make educated decisions about what the next steps are.

So it is a start. Establishing boundaries, making ME a priority and taking actions in order to make some really important decisions.

21 February 2009


I started this blog with good intentions last year. I wanted to talk about projects and life and then well, life took over. But not necessarily in a good way. So why shouldn't I talk about the craziness that has become the norm? I mean, it is what is going on in my life.

I have had a chronic disease since the age of 3 and have dealt with it fairly well, for the most part. Learning to deal with flare ups, weird random pains, issues that never make sense, millions of doctors appointments and drugs, oh yes, the wonders of modern medicine. While some days, months, years I am perfectly "normal"; there are also those days, months, years where you wonder is this all there is in life? Where should I go next? Well, I am in one of those down phases. It's a phase as tends to be the cycle with any illness. But seriously, it's been a down hill 2 year cycle, with an amazing last 8 months, that makes me wonder what other things can be thrown my way.

You get to the point where you can tolerate what your body is going through. You shrug it off as if its just normal wear and tear, like you overdid it at the gym yesterday and you ache a little. You just get use to it. You push yourself, because we all need to feel like we accomplish something, feel like a part of society in some way.

Last month, I learned that I have a new disease on top of everything else. YAY ME!!! And it is worse in the cold. It effects my extremities (hands and feet). The thing is is that it is not super painful, I just lose feeling in my toes and fingers and they are either dead white in color or that dead purple-grey color. As I work in a lab and have lots of meetings it is difficult to hide how one's hands appear. I am able to function since I seem to have a high tolerance for pain and am very stubborn. I have also felt if something needs to get done, you just push through as if nothing is wrong. I am having to learn that this is the wrong attitude. Rather difficult. So now I am supposed to wear gloves 24 hours a day and take this nasty medicine that gives me migraines and drops my blood pressure. The medicine I can do without. But the gloves! Oh my! I think I may have found the new love of my life. The gloves are working miracles. Gloves can be fashionable, they can be now. Right?! Now just to find fashionable form fitting gloves that are easy to work in. :D I see new projects in my mind as I have found some glove patterns I can knit and make custom to fit my hands and use up some of the yarn in my closet.

I am trying to accept what is going on and stay positive. This year was supposed to be about healing, about being healthy. The new years goals were simple: eat better, try not to get stuck in the bathtub anymore, and to take time out for me. The year started out great! My bf and I love to cook. We found great healthy recipes. We ate well. We ate lots of fruit from our backyard. No fast food, very little eating out. I even lost 5 pounds just by changing my diet (or so I thought). Then I had a bad food week (lots of drinking, taco bell, etc) and that's ok, because no ones perfect and sometimes you just need a break, but I lost another 4.5 pounds that week. Now for the bathtub, well, I need that upper body strength back...

So I thought I was doing pretty well until this past week. The doctor called at 4:45pm the other night and changed all those thoughts. Here I learned some crazy news about my insides not really working the way they are supposed to, elevated enzyme and protein levels that should be otherwise, possible new chronic illness brewing and the oh great, the drugs aren't working, stop everything and go take some steroids. Steroids the gool ol' fashioned cure all for ever ails you, even if its a tic-tac substitue or a way to keep functioning at a level to keep your (high-paid) job. Sorry to much reading about A-Rod these weeks. This is fun, since I just finished battling the health insurance company to get the last batch of drugs that arrived last week. Oh the fun.

Now its decision time. What to do, what to treat, how to treat, can I still have kids? How does this effect my relationship, my livelihood, my physical state, not to mention my mental state. I mean I am only 32, some of these decisions that I need to make are so personal yet I feel that my choices are so limited. I am way out of my comfort zone here. I am scared and nervous. But really, it is just hard to admit to myself that
  • 1) I am sick. Yes really sick.
  • 2) no matter what I do, I need to make ME a priority (easier said than done)
  • 3) the illness has not won (although it feels like I am admitting defeat), I just need to treat me, and
  • 4) I need to learn to be selfish. All easier said than done.
I just wish to be normal and healthy. I have been really lucky so far. My support system has been great with the few friends that know what is going on, my family and my bf. The bf is great! I think he is a little overwhelmed by all of this. He hides it well and really tries to help me take better care of me. He is great! SO thank you to everyone.

I really did not want to blog about this stuff, but it is on my mind 24-7 for the last 8 months or so. Which is why I really have not posted anything. I have written lots and realized I never posted any of it. I guess I did not want to share this stuff, burden people. Or admit, through writing, what was going on. I found a blog, The Single Gal's Guide To RA, a few months ago about someone going through something similar to me, and I found it refreshingly honest, funny and surprisingly helpful. It made me realize that maybe I am "normal" and "healthy" just in my own way, and reminded me that these set backs are just temporary, as scary as they may be. So as things pop into my head, hopefully I will write more, and not worry about just randomly chatting away.