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.


  1. It makes me so frustrated that you have to deal with this. Come on modern medicine, get with the program! Fix this!

    I can empathize a little bit with the need to contribute and lead a normal life. That's been one of the most frustrating thing about the migraines: how much of my time they take away from me.

    Speaking of migraines, there's a supplement I take that reduces mine drastically. It's coq10, and might be worth asking your doctors if you can take it.

    And finally, thank you so much for posting about this stuff. It makes me feel better that I at least know what's going on, and know that if there's something I can do, I'll be in the loop.

  2. Thanks! It's just been a frustrating week. I really did not know until these past 2 days how much I have been bottling up (mentally and physically).

  3. Awww, I'm so sorry you are going through so much. Finding the right balance of meds is not easy :(

    I'm glad you are writing about it though - bottling up is not good!