03 October 2009

Can you believe it has been 6 months?!

Wow! It has been a while since I last posted. No good reason for not posting, so just going to start a new.

It has been about 6 months since I started taking Rituxan. The drug worked really well for me. I have hardly had any flare ups over the last few months. I even survived a week in Reno. The bf and I went to Reno to check out the Reno Air Races. It was awesome! But for someone with RA and Lupus, any vacation can be a scary thought. You are out of your comfort zone, you are on someone else's schedule, the weather is different, the food is not your normal food, and any little thing could set off a flare. And the trip was awesome! It was not until the last day, that my knees and hips decided to give me a little attitude for making them walk all week in the heat. But I survived! It was a great little victory for me. It really made me smile and be thankful for where I am today.

Yesterday I went for another Rituxan treatment. It went surprisingly well. I had no side effects this time, no shortness of breath, no fever and my blood pressure stayed at its normal low. And I was done in 5 1/2 hours. It was great! I even had a friend visit for a little while. It was great to catch up. I could not have asked for a better day.

Today I am doing fine. The only way you would know I went through the ordeal yesterday, is if you spotted my nicely bruised hand. In my eyes, it is a badge of success. A badge of how far I have come this year. Of all that I have accomplished health-wise.

Now I just have one more treatment left. Even though yesterday was easy, I am still not looking forward to it. Oh well...

22 July 2009


"I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when ...
it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain."

---Frank Herbert, Dune

One of my favorite quotes keeps running through my head as the last few days have been filled with fear and trepidation. As the medicine taper continues, my body is beginning to show its strong distaste to the taper. The body is temperamental these days, starting off with a small whine of annoyance that I would dare remove the precious steroid to the all out temper tantrum, that has me in near tears.

And then this week I must taper even further. I must drop to 5 mg. While I should be shouting for joy, that this glorious moment has arrived, that all of these past 5 months have been worth it, I am paralyzed with fear.

I want to up my dose. I do not want to keep decreasing. I do not like the way I feel. The way the body screams back at me on a daily basis. The way I have to hide it from the world. I mean, I am getting better, I am not supposed to have set backs. I am not supposed to hurt. I am not...

These setbacks are preventing me from committing to events that I want to commit to. For instance, I really would like to compete in a triathlon. Not one of those Iron Man's or anything. I know I do not have the skills for that event, but one of those small, I could walk it if I had to, triathlon events. There is one coming up. It is short. Some friends are doing it. I could possibly compete in it with some training. BUT I am afraid to commit. I am afraid since I tried to bike ride this weekend and it was a huge failure. Part failure due to the equipment and part because of me, because my body decided to throw a small temper tantrum. I could barely make it around the block on the bike. I am scared because I do not know what my body will be like tomorrow, much less 2 months from now.

I feel like I am giving into my fears. I hate that. I do not know what to do to fix it. This is not one of those, just push through the pain moments and you will succeed. Not one of those, "Don't be a wuss moments". These days this is the reality that I am struggling to not only accept but make life work.

I only hope that in the end, that I could be exactly where the quote ends, "Where the fear has gone there will be nothing. Only I will remain." Then I will be in a better place and it will have all been worth it.

I think I will go watch Dune tonight - the David Lynch version.

24 June 2009

Grumbles Out Of Bed

Stayed up way too late last night, working on a new quilt. Almost finished the top. Have one more seam to go, well, must rip it out first, then re-sew.

Ended up getting up early to have a nice productive day at both work and home. But realizing that after 5 hours of sleep and a rather un-productive morning, it may not have been worth it. Plus grumpy because my hands have decided to be purple today.

Oh yeah, I brought my quilt in to work today, so that I could use my down time to rip out the one row. And I forgot the seam ripper on the kitchen table.

I should just go back to bed.

23 June 2009

Is It Back?

I should be rather excited today, but I am not.

I am steadily decreasing the amount of prednisone I am taking, I just finished the quilt top I have been working on for months, I have fresh veggies from my garden, and all else in the personal life seems to be going well.

I have been feeling rather uncomfortable the last few days. My knees are starting to resemble good sized cantaloupes and it is beginning to hurt when I walk. I just was hoping all of this was done, at least for a while longer. And I am worried. As I decrease the amount of steroid in my body, the joints seems to be a little more achy.

I hope this is all in my head and not the start of another bout of fun.

18 June 2009

Weird Day

Today started out great! Went to a WW meeting and found out I had lost a few more pounds (total lost so far is 7.8 pounds). Work was good. Everything seemed to be going well.

Then I decided to go for a walk. I have been walking at work a few times a week. There are lots of great trails by work. And the two trails I usually go on are 3.5 and 4 miles each. So I figure I have been doing pretty well. However, I started out on the walk. And things just began to feel bad. My knee started to ache and it was not a sore over use kind of ache. It is the kind that makes me go, Oh crap! Not this again!. After about 15 more minutes of walking, my hip began in on the fun. Not one to every want to miss out on fun! The hip started to pop in and out. Lovely! Luckily for me, my friend who I was walking with, was also not feeling up to the usual long walk, so we turned around.

Made it back to the office in one piece. But kept thinking how I wished I had my cell phone to call someone to pick us up. I am a little worried that this might be the beginning of a flare up. Even if it is not, it is definitely something to be cautious of. And I am worried how the rest of the day, week will go, if this achiness keeps up.

At least I have a fun movie night to look forward to! (a nice sedentary evening).

12 June 2009

Time to be thankful

This week has been pretty nice. I really can not complain. I have been reading other blogs about life with RA and feel pretty fortunate. My life of chaos and extreme discomfort is slowing moving to a more normal functional realm. After a long year, some much needed time off from life, drastic changes in my medical care, and a lot of faith, I am finally feeling better. I feel like I am normal. Or as normal as any of us really are. I can do the everyday mundane things and the not so mundane things.

I think the hardest part of this disease is that it blindly strikes, hard, quick, out of nowhere; with periods of peace which trick you. They trick you into forgetting what the disease is like, the constant pain, the inability to do simple tasks. The way in which your body can go from normal to completely broken in 0 to 60 in a blink of an eye... And for me it was only 2 short months ago, where I was struggling with just about everything. Trying to cope with it all. Trying hard not to depend on others too much. Never wanting to be a burden and always wanting...

It is good to remember what it was like. It is good to know that all the changes and hard decisions made over the last few months were worth it. That my body has responded amazingly well. And that is definitely something to celebrate and be thankful for!

And this is not only noticed by me, by how I feel each day and perceive myself. But by others. YAY! This weekend a friend told me how it was nice to see me so much more animated. It is not the first time that I had heard that, but each time I hear a comment like that, it makes me stop and think about the toll this disease takes on a person as a whole and how much I have to be grateful for. I definitely enjoy being more active and positive. It just feels good!

The highlights of the week
  • wonderful comments from friends about positive attitude ~ which is great since I feel I can be quite a downer and have tend to view the glass as half empty
  • increase in energy
  • making time to workout ~ walking at work 3.5 miles 3 times this week and dance class (but I still gained weight)
  • pills decreasing in number ~ I am down to 20 mg prednisone a day!!! WoOT!!!
  • seeing the squash and tomatoes on the plants grow + building the trellis for the peas with the bf
  • making time for and having a great date night
  • success at work ~ smoothly accomplishing something (that had to do with a someone) that I was dreading... but hey, it was smooth as butter
  • and possibilities at work ... keeping fingers (and toes) crossed on this
My life seems to have a balance or as close to one, that I have not seen in years. The body works. I feel good. I have more energy than I have in a long while. Right now the key to keeping things running smoothly seems to be structure - planned diets, sleep schedule, medication schedule, lists for just about everything under the sun... I am a little tired of the schedule and plans. But when I do not get enough sleep or eat the wrong thing, I start to feel bad again.

I guess it is all about balance.

I do miss some of the chaos. May have to run amok a bit.

02 June 2009

Strength and Inspiration

As I am sitting here, reading others blogs, I came across a posting by RA Guy which was all about strength and inspiration. He had a face-to-face meet with a woman who has lived with RA and was willing to share her stories, the good and the bad. So check out his post Wonder Woman, My Mentor.

It is a good read. Definitely inspiring to all who have any struggles, no matter what size.

28 May 2009

Weighing In

I was a little nervous today about going to the WW meeting. It was just the first week of working the program, but it had been a rough week of staying within my allotted points. It was a long holiday weekend, a holiday that is surrounded by food! I mean, there was carne asada night at my folks, wine tasting with picnic, mimosas, and who can forget the all-you-can-eat sushi joint. But I was good, I tried really hard to choose what I wanted and have correct portions.

Then there is today, Thursday. Which is a good thing usually since the science team (my team) at work has free lunch while we usually discuss whatever is the hot data for our team. I brought my lunch, knowing that the lunches provided are usually hard to say no to and full of calories and fat! Then they go and have make your own tacos! TACOS!!! With all the fixings.... YUMMY!!! I could not say no. I had 2 tacos with extra veggies, a little bit of guacamole, beans and rice. Then I went for the shortbread cookie. I had to! I only really wanted a taste (and it was not worth it). One taste of cookie that really was all that I had. So I ended up going over my points for the day by 2, but that is ok. Even with the crazy eating weekend, I hardly used up the extra points for the week. So I was safe.

But I still had to face the scale this evening. And with the bf doing so good, I was a little nervous. OK a lot nervous. I weighed in. The WW leader was quiet. Looked at me, looked at the scale and then back to the computer. She was quiet. I was getting more nervous. Then she says, "Congrats! You did great this week! Can I give you your award publicly in the meeting?" WHAT?! I did good? I get an award? How good did I do. I lost 6 pounds during the first week! I am pretty jazzed about this. I was hoping for 1-2 pounds this week, what with all the drugs I am still on.

Now I am doing the happy dance. Wanting to celebrate by eating out. But I know that that would be the wrong thing to do. So I am going to reward myself with some pudding and a silly movie.

And the award was to mark that I had lost the first 5 pounds. A good goal! Now onto the next goal, my 5%... so only a few more pounds to go...

Less is Better

Almost done with my second week of work since my return to the real world. Not quite two full weeks, but it is close enough. Each day is a little bit better. Each day is less.

Less weird at work ~
  • less comments/questions about where I have been
  • less discussions about my health
Less in life ~
  • definitely less high fat foods
  • puffy cheeks are starting to lose some of that puff
  • the bf weighed in after week 1 of WW and is doing awesome! Less 6 pounds without cutting the hair! YAY!!! Way to go! (I do not weigh in until tonight, but hoping to also report a little less poundage)
  • I am wearing rings today! No swelling of the fingers and I have been at work all day, typing away. What an improvement!
  • Also, my feet are wearing fancy schmancy shoes (ok, fancy for me) and those feet are still in the shoes. No tap dancing around the office barefoot today.
These small changes of less are HUGE!

Every day is a little bit better than the last. Hope this trend stays for a while.

25 May 2009

Relaxation and Then Some

For some reason I have had no energy this weekend. I am completely wiped out. I have not done anything that would require extra energy, that would give me cause to say K take a break, you have worked hard. Nothing. Nada. Zilch. The weekend composed of eating way too much at my parents on Friday, massage on Saturday, being lazy and a nap on Sunday, movie and wine tasting today. LAZY!!!

So why do I feel like the aliens have landed and have decided to leech my life force????

The massage was awesome! My girlfriends had given me a massage for a b-day gift and I finally had time to schedule it. The masseuse was very good... until he got to my feet. And then he touched something and OUCH!!! The reflexologist in him, says the ouchie spots are due to issues with bladder/kidney areas. Ok, I can believe that, what with all the drugs that are in my system. But still OWWW!!! Who knew a single point on the pad of my foot could be so sensitive. Other than that, it was great. I am thinking of doing this more often. I believe it will be good overall. Good for the circulation. Good to work out some of the kinks.

Now must go back to figuring out how to combat the life force leeching aliens. The bf says I need to start exercising (bike rides are his suggestion) to combat these evil forces conniving against me. Hmmm... not sure about that... will think about it while I drift back to the sewing machine.

21 May 2009

Coming To Terms With The Scale

While I must admit that I LOVED having the time off from work (more than I ever realized I would). I now have to deal with the reality of returning to work and oh my goodness!, what changes have occurred within / around / near my body. Somethings I am powerless to change ~ the deep sunken eyes and the swollen, puffy cheeks ~ all due to steroids. And will come off eventually, when I am no longer taking them, but that is going to be a while. This is my mantra ~ it is not permanent...

It really is the overall weight gain which is stashed somewhere between the thighs and boobs that has caused me to no longer fit into my pants which were swimming on me in February!!! To do something about this weight gain, to make me accountable for what I stuff in my mouth, I joined Weight Watchers today. I knew I had gained weight. The clothes did not fit. I just do not like the way I look. But the WW scale tells no lies. In this short 10 weeks, I have gained 27 pounds! YIKES!!! It can be "hidden" with properly fitted clothes. But I really do not wish to have to buy a new wardrobe. I like the old size 10 body and my wardrobe is FINALLY fitted to that old body.

I knew I had gained weight. Who is to blame? I could blame the weight gain all I wanted to on the steroids, other new drugs, feeling bad for myself, just eating MORE, being sick, etc, etc. But I will not! I need to take ownership of my body and my life. WW will allow me to be honest with what I shovel into my mouth and with my true weight. Hopefully, even with the steroids and other drugs, I can begin to lose these extra few pounds.

It may take a while, but no more excuses. The first goal is just to lose 9 pounds ( or 5%).... we shall see how long this takes...

Even the BF is going to do the WW plan with me. YAY for support!!!
Wish us luck!

What People Say

Yesterday was my first day back to work after 10 weeks off. It was a nice mellow day full of interesting comments and really no work. Most of the day can be summed up within the following four topics:

  • welcome back - how are you feeling? (talked more about my health yesterday than I had all of last month).
  • you were gone??? (this by someone in marketing who I rarely interact with, so it is ok).
  • the one I was dreading - You have gained weight! ~ Really, no way, I would never have noticed that! Who says that to someone? Really? SRSLY??? Yes, I know I have gained some weight, but hey, I have been sick and recovering.
  • and my personal favorite of the day, sincerely meaning this: "You have such a good attitude about you today and I noticed you are smiling a lot. It looks good on you!" ~ What an amazing thing to say! The person then asked me what the difference was, I said that I am no longer in constant pain and getting away was a nice break, good both physically and mentally.
Now people, when someone comes back from an illness, focus on the positive DO NOT TELL THEM THAT THEY ARE FAT, cuz I am sure that they know that they are no longer the svelte beauty they once were. And it is just rude! But I was expecting the fat comment, from somewhere, someone, just was not expecting it yesterday. Oh well. It was rather funny. At least that is how I took it.

19 May 2009

Almost Back to Work

My last day of FREEDOM is today. What to do? I have a to-do list a mile long, of all the things I should get done before I go back to work, of all the chores around the house that have been left undone, of all the the things I want to do... what should I do?

Tomorrow will be my first day back at work after my 10 week leave of absence. WOW! 10 weeks went fast! And what do I have to show for it?!
  • progress on quilts and knitting projects
  • a veggie garden that is starting to bloom (I have baby squash) - such a proud mama
  • a healthier, happier body that has been relatively flare free
  • an awesome support network of friends, family and doctors
  • and a body that needs to go on a diet (YIKES! Steroids are not good for the figure)
  • vacations to see family and friends
But the thought of going back tomorrow terrifies me. I know most of the people there. I guess the company has expanded with sales and marketing folks since I have left (and you know how those teams grow and multiply!). I am worried about how I look. My face is horrible! I haz the cheeks that can store nuts for a whole family of squirrels for an entire winter or two. Plus my face is so red. My face will calm down once I get off some of the extra drugs, but that will still be awhile. It is the one obvious way people can tell that I am not normal. It really bothers me. The rest of the weight gain (about 20 pounds) can easily be hid as long as I wear clothes that fit... must admit to weight gain and buy new clothes.... So not too worried about that.

The other thing that bothers me is what will people say to me? what will it be like to go back? what will I be working on? It is all those first day of school/work type jitters. I guess no matter how old one gets or how many new jobs, you never really get over those feelings. I also am worried that people will see me as less than whole. Like I can not do the job anymore. Which is totally not the case. I am completely fine! I can function as well as before. I just know I have a few boundaries that I need to work into my day, like no more forgetting to eat, making sure I get to bed every night at a decent hour, things like that. I hope people do not just see me for my illness but for me, the me that can function normally (well, as normally as any of us really function) as an adult. I mean, I am no longer getting stuck in places anymore! I can touch my toes, well sort of, as long as it is not one of those crazy yoga poses - but then again, I could never do that.

Today will start with a Costco trip and hopefully some fun will follow for my last day of freedom! For tomorrow is back to the normal working adult world.

15 May 2009

Fridge Clean Out

Over the past few months I have been switched medications over and over and over again. So I have (or had) a nicely stocked fridge of Enbrel and Humira. Hoping I could donate it somewhere, to someone. My doctor kept telling me to hang on to it, just in case and wait a few months, then donate. But between leaving for Reno and coming home, our fridge went out... so all the meds have been room temperature for about 3 days. Not good for the meds.

I guess this is one really expensive fridge clean out!

Stronger Than Before

My 12 day adventure came to an end. And what an adventure it was!

Texas was amazing! The weather was perfect Texas weather ~ nice and warm with a tad humidity and a chance of thunderstorms. It was a great chance for a good flare. But nada nothing zilch happened. YAY!!!

My twin nephews are adorable. I managed to gobble them up every chance I could get. They were both a bit sick and unhappy in the beginning of my trip, but by the end of the trip, they were smiling, playing and just so happy. The twins even wanted to show us how to play with the Wii. Running around, pretending to throw the controllers and growling at the TV. It was pretty silly.

Walking around stores in Texas with the twins was quite interesting. People will just walk up to the boys and touch them or try to pick them up. I was not use to that at all!!! My brother says that this is just normal. And NO he has not gotten use to it! WOW!!! Not sure how I would feel about that if it happened all the time. Everyone was real nice. I had no problems with anyone. It is just a weird feeling when someone approaches you and makes a bee-line to the child.

I managed to catch the twins cold. Which amazingly was great for travel. With the swine flu scare, I managed to get the whole row to myself. No one wanted to sit next to a coughing, nose blowing chica. Oh well. I flew home nice and comfortably into SFO. Caught the dance recital by Peck Peck Dance Ensemble while in SF. And had a really good time seeing the performance and catching up with my folks.

With my cold full blown, I caught a plane ride to Reno and tried to party it up. Ok. I went to bed early every night, but I still gambled my little tushy up and had a great time with the girls. I need to do these little mini trips more often. It is just so nice to get away and be with your girlfriends.

After this amazing, hectic 12 days, I feel surprisingly good (with a little tired and a nose that wishes to be on someone else's face). I really expected either the weather or the travel to cause some sort of physical ailment in my body, some sort of random flare moment. But really nothing. Maybe the Rituxan is working... Wouldn't that be awesome! I am tapering down the prednisone and am currently down to 30 mg a day. Half of where I started with no ill side effects.

Yes, I can not wait to be completely off the prednisone and able to lose the sunken in eye, chubby cheek look. I want my body and face back! But I really should not complain. I am a million times better than I was 3 months ago. My recovery is going well.

I am even going back to work next week. The true stress test... but will discuss after I start back...

02 May 2009


With this almost rainy day, one really wants to just sit with a cup of hot cocoa and watch a movie or two. However, I am swamped with a mile long to-do list as I begin my first true adventure since taking a leave of absence. It begins with me going to a bachlorette party, then heading to Texas, only to come back to California for a day, before I head to Reno all in a short 13 days. The adventure begins this afternoon and I am procrastinating packing for the overnight party. Somethings never change.

Today I woke up and there were certain things that just made me smile...
Pure blissful happiness...

Finishing the first row of the quilt. It is coming along nicely.

Finding that perfect container that fits (almost) all of my daily meds.

And seeing my garden grow. :D

new growth (but I can not remember what is planted here)
and tomatoes and squash and all are still doing well

Now to packing and adventure and hoping that my body stands up to it all!

30 April 2009

Today's horoscope reaffirms my need to learn to finish what I start!

Your horoscope for April 30, 2009
Look before you leap today. There is a very good chance that you will step off the edge of a cliff if you are not careful. Errors can easily be avoided by simply taking the time to think things through carefully before you act. You are great when it comes to starting projects, but not so great when it comes to finishing them. Today would be an excellent time to practice your follow-through.


29 April 2009

7 Years In The Making...

I joined the Stashbuster's Class at Always Quilting this past month. It is great! You show up once a month, work on any of your UFO's and then get "stash" money when you finish a project. So I came home and fished out all sorts of old projects that have never been finished. You see, I am really good at starting projects, really bad at finishing said projects. Now all I see are "stash" money to buy new fabric for more projects!

The first quilt top finish is a Stack N Whack I started in 2002. My mom and I took a class to learn this technique. She finished hers, I never did. I really should have taken a picture of my unfinished quilt, because as I unfolded it last week there were all these yellow topped glass pins still stuck in it. Holding bits together. After looking at the quilt, I realized I only had 4 seams left to sew. That was it! Then to just add the border.

The construction is really poor (but no one will get to see that once it is all quilted together). But I do love how it turned out!

Here is the quilt top with the border attached.

Now onto picking backing fabric so I can finish the project and use the lovely quilt. And round up some stash money for fabric for more future UFO's.

21 April 2009

How does your garden grow?

After what feels like months of having the weak, I finally am starting to feel "normal". Or at least feel like I am showing improvement. My bf has been working hard at weeding out the area behind our fig tree, so that I could plant a veggie garden. I really wanted to do the weeding. But I tried and FAILED!!! The weeds were mighty! They fought hard to stay in the ground and won. So the bf used his brute strength to get rid of all of the weeds.

Yesterday, I went out there and planted the veggies. YAY!!! And there was a teeny tiny section of weeds staring at me. Not much, but right along the wall. They were taunting me. I got out the hula-hoe, just like before, but this time I won the battle! I was so excited. Small win for me! Then I completed the planting job. After it was all said and done, the plants and seeds were all in the ground, I was covered in mud and sweat, I felt really good. This was the first time I have really done something physical in months. It is a good start. A good sign. Times are a changing. I am on the mend.

Here is the veggie garden. My big accomplishment for Monday!

I think we might have over did it for our first veggie garden. I planted tomatoes, squash, pumpkin, honey dew, leeks, spinach, snow peas, snap peas, and some different pepper plants. Now hopefully it will grow and we will get to eat the harvest before the 007 squirrels get to them.

18 April 2009

Round 2

Yesterday I had the second round of Rituxan treatment. I met with the doctor and we discussed the few side effects I had last time. Then he walked me over to the clinic and the nurses whisked me away....

It was a long day. The plan was to drug me and ramp the drip up to 200 cc/hr and leave it there until all 1000 cc were in me. They loaded me with Benadryl, Tylenol, and steroids to prevent any side effects and started the Rituxan. The rest of the day was really uneventful, at least for me. I watched movies on the iPod and crocheted a blanket and chatted with my neighbors and people watched (good people watching day). And then my day was done.

I was the second person in the clinic and one of the last ones out. At least this time I was not THE LAST ONE on a Friday night there.

Now I just wait to see if it all works. Hopefully it will work. And if it does work, then I will be back at the clinic in six months to do 2 more rounds of treatment. The treatment really is not bad at all. It is just a long day stuck in a chair hooked up to an IV people watching and keeping yourself entertained.

I did find out how much weight I have gained. They weighed me 2.5 weeks ago when I met with the doctor and then again yesterday before treatment. I have gained 9 pounds. Not too bad. But I think most of it has landed on my face! I have chipmunk cheeks that the squirrels would die for! Definitely storing food for the next few winters. Luckily, most of my weight gain is due to the steroids I am taking and should come off once I stop taking them. Who knows when that will be. In the meantime, I just need to keep watching what I eat in a healthy way, not the watching the food go from plate to fork to mouth kind of way, and keep exercising.

Fat Face

The other day, I was hanging out with my grandmother and her older sister. Now my grandmother has Alzheimer's. We were looking at photos and my great aunt was asking if grandma knew any of the people in the photos. Grandma looks up at her sister and says she does not know who she is. Then turns to me and says, of course I know her, that's Fat Face.

Well, that's a new one on me. I know I have gained some weight, but SRSLY! Fat Face!!! My grandma has always had issues with weight. She would live off of lettuce leaves and broccoli and always had a comment about someone's weight, especially if they were related. Weight and body image were very important to her while growing up. And continued to be important to her as she raised her children. But now that she has full blown Alzheimer's there is no filter.

We ended up taking grandma out for ice cream. And while at the parlor there was this one family there, a mom and her 2 kids. What was interesting about them, was that they were the family that Super Size Me is about. The family was overweight and the kids wanted ICE CREAM!!! They all had a cone when we walked in. They ALL ordered ANOTHER cone while we were eating ours. And then they left. But only to come back, so that the son could have another cone. The mom said it was ok as long as he ordered a sorbet. The daughter also wanted another scoop, but her wish was not granted. I was shocked.

Growing up, we would go out for ice cream as a treat and there was no way we were getting a second ice cream, much less a third. I had never seen anything quite like this before. And amazingly grandma kept her mouth shut! She just glared at the family, but never said one word. Probably because it was stuffed full of her single scoop of cookies n cream.

I remember watching the Super Size Me documentary thinking that you do not have to order everything on the menu, you do not have to get a large. But here in front of me it was happening. It was a very surreal cultural moment for me, one that I had not really experienced before.

Ironically, later that same evening, grandma told me how great I looked and that I had lost tons of weight. Now I have gained some weight and it is REALLY obvious in the face, so I just laughed and joked around with grandma.

What else can you do?

04 April 2009

One down, one to go

As nervous as I was yesterday, things went fairly smooth. The clinic and the nursing staff were awesome! You walk in and there is a great big nursing station with quite a few chairs around it. You walk in, put your paperwork in the tray and pick your chair. I brought a backpack full of food and things to do, plus a blanket and pillow. So I sat in my chair and waited. There was only one other person there at 9:30 am. It was a slow morning the nurses said.

They gave me some Tylenol and hooked up my IV. And started the Benadryl through the IV. All went fine. Could not feel the IV hardly at all. Once the Rituxan started going in, my fingers on my left hand (the one with the IV) started turning purple, so I grabbed my gloves and modified them. I now have a glove that only comes down to where the IV was. Nice and convenient for the rest of my treatments. Since the medicine is at room temperature, it was causing the Raynaud's to act up.

The next four hours went by no problem. They ramped up the drug from 50 cc/hr to 275 cc/hr, monitoring my vitals every 15-30 minutes. I had a small fever and my blood pressure was going up, other than that all was fine. But then after about 4 hours, I had a reaction to the drug. Nothing big, so it seemed. But I got in trouble for not reporting it soon enough. I just felt flush, my heart was racing and I had shortness of breath. They stopped the IV, gave me some more Tylenol and Benadryl and some steroids, and everything calmed back down about 45 minutes later. The bad news, was that we had to drop the flow rate down and could not raise it, so it stayed at 150 cc/hr. The rest of the afternoon went fine. The slow flow rate made it a long day at the clinic as they needed to get 1000 cc of the fluid into me. We ended up stopping at 5:30 pm with about 50 cc left in the bag. Not too bad.

The clinic was good for people watching as it would be packed for a few hours, then empty and then packed again. Everyone who came in was really nice and lots of different types of treatments were being offered. My dad even came by for a surprise visit!

I go back in two weeks and they want me to come in early. The second treatment should go smoother (less than 4 hours), but since I had the reactions they are worried it might be another long day.

Now it is just the waiting game to see how my body responds to the Rituxan. Today I got some weird aches and pains in my legs and my hands swelled up. The bf and I went for a walk, thinking I just need to get some circulation going from sitting around all day yesterday and then sleeping. But the pains got worse. They are starting to wain now.

All in all, it really was not that bad. I have had more traumatic experiences giving blood! I am hopeful that I will be symptom free soon and able to get back to my normal life.

But for tonight, I am off to see a friend's concert for a wonderful evening full of jazz, broadway and pop songs.

03 April 2009

Treatment Day

Well, it is finally here, after more than a month of waiting, I am going in for the Rituxan treatment. The bf made me breakfast, so I could start my day off right. I have my go-bag packed with goodies to eat, stuff to do, blanket and pillow. I am really not looking forward to the day, but am anxiously awaiting the results.

In the past two weeks, I have started to flare up, in my old school normal flare way. This means my knees and hips act up. I am used to this. But I forgot how having two softballs for knees looks and how when you walk, your hip locks and clicks with every step. The nice thing about this flare, is that the prednisone causes no joint pain and I can move around. I just feel sluggish and have huge joints.

Hopefully with today's Rituxan treatment, I will start to see some positive changes.

Off to see the clinic...

02 April 2009


The last few weeks have been a mix of keeping up with the doctors, trying to stay busy at home and getting some exercise. And also lessons in patience, communication and physical limitations.

First the fun, what have I been doing: I have been working on random small projects about the house and started a new quilt project that I have been obsessively working on. For the quilt project, I had to cut out over 2500 pieces. It is a double wedding ring quilt. I spent the better part of one week cutting and then sewing non-stop. But then had a nice little flare up to de-rail my progress. I am still slowing sewing the pieces together, but it is at a snails pace.

Exercise: I have attempted to get back into the pool. Swimming was always something I enjoyed, I could just jump in, swim an hour, no problems. Boy, has that changed. It was a real challenge to do 30 laps. It took me 45 minutes with lots of rests. The pool is nice, heated to a wonderful 93C. I even took an RA Foundation water aerobics class where I was the only one in the class. The steroids have helped me to regain motion, just not strenght, so the instructor advised me to take a different class to help with strength and conditioning.
And I borrowed a bike from a friend, so have been riding a few times, just 30 minutes at a stretch. Boy that is a lot of work.
Baby steps... I remember it all being easier...
I have added seeing a chiropractor and hopefully will start some physical therapy soon.

Doctor Fun: There were horrible communication issues between the first oncologist, aka Doctor B, the health insurance company and two different pharmacies. It took 2 weeks for the health insurance company to just say they would not play ball. So I had to go to a new oncologist, Doctor C, at a different clinic and re-start the process for pre-authorization with the health insurance company and get a consultation with Doctor C. The good news, was that Doctor C's office got me in right away and he was awesome! He was able to answer all of my questions that Doctor B could not answer and made me feel at ease. His clinic is great! There is even a treatment wing of the clinic, where all patients getting various treatments hang out with the nursing staff. All went well, but then we had to wait over a week for the health insurance company to say yay or nay.

Then at 7:30 am on my birthday, I got the call, the health insurance company came through! ALL WAS APPROVED!!! What a great birthday present! I went to go make my phone call, to schedule my treatment, only to find out that I have to take a chemo teach class before I can schedule my treatment. So I scheduled my class for this past wednesday, along with 2 other doctors appointments. And during my chemo teach class, the nurse told me the clinic had my drug and was waiting for me. I was shocked to say the least. What?! I could have done this today?? So I went back and met the nurses and re-scheduled my treatment for this friday, tomorrow. And I am scheduled for my second treatment in 2 weeks.

Tomorrow is the big day. They are estimating 5-7 hours of fun for the first Rituxan treatment. I am nervous, but glad to be on the schedule and get it over with. I am prepared, I hope. Made some cookies to bring to snack on, got my bag-o-string cheese and am making a fresh loaf of bread so I can have a sandwich or two. Traded iPods with my brother so I could watch movies, have a few good books to sink my teeth into, and a new knitting project. Hopefully that will keep me busy tomorrow and keep my mind off of what is going on.

It is only one day, it will be over before I know it. And I will be hopefully feeling better soon. Plus I get to start cutting back on the prednisone.

12 March 2009

Pharmacy Update

Good News
  • doctor's office is on top of things
  • they have a call in to a new pharmacy who specializes in these drugs
Bad News
  • it will take 5 business days to process the order
  • may not be able to start treatment next week
  • feel like I am wasting my time off due to what seems like an endless wait
Guess I will go back to my knitting...


Sorry, I guess this is a rant. But after spending over a week hunting down the prescription for the Rituxan. I am very very annoyed!

It really is a simple process. Doctor gives you a prescription, you get it filled. For this, there are a few extra steps, but not too many.

  • Must get health insurance pre-approval = CHECK
  • Doctor faxes approved prescription to pharmacy = CHECK (done last week)
  • I follow up and pharmacy mails me said prescription = NOT CHECK
The pharmacy did not get the fax! They have not got the fax now 4 times! Yesterday they FINALLY received the fax, said someone will call me back that afternoon to schedule delivery. Today, still no call. So I call back. Guess what!?!? Because of the type of health insurance I have and the type of treatment, the doctor has to order the drug from the manufacturer! WHAT?! At that moment, when I heard that, I felt as if I was Linda Blair and my head was beginning to spin.

How long is this going to take now? Delivery from the manufacturer? The doctor must order it? All of my PLANNING has gone out the window. And of course, the doctors office is on lunch when I find this out. So now I must wait for them to call me back. They are really beginning to love me there. Can you fill this form out, now can you make this call...

Scheduling the start of the treatment is not a problem as long as I give 24 hours notice, but they only do treatments Tuesday through Thursday. So what's a girl to do???

I really want to start treatment next week.

I want to get better.

I want to get better...

Frustrated in waiting

Breaks, Time Off, Leave of Absence, Disability

This past Monday was my first day on my break. Err...I guess disability leave... That's right! If you did not know it, I am taking a leave of absence from work, to focus on ME! This will give me time to get the right treatments, get healthier and just breathe. I know it is the right decision to do this, but it really is difficult.

Difficult to have to admit to being THAT SICK
Difficult to not go to work, when your brain and body still function
Difficult, when you look "normal" "healthy" for the most part
Difficult, when you have to look that dirty word DISABILITY squarely in the eye

Friday was my last day of work and I had to wrap a few things up. I really should not have stayed at work until 9pm. But I did. Not because the work was all that much, but because I simply did not want to leave. I did not want to have to deal with anything. I realized as I was walking out the door, tears streaming down my face, that I had used work as a crutch for the past two weeks to help me not cope with what was really going on . That walking out those RainForest doors meant my barriers, that I had so nicely put up in my corner of the RF, came crashing down. Even once I realized what was going on, I could not stop the emotional rollercoaster that followed. So Friday was really not a fun night. It was a pity party! And I was the guest attraction. YAY ME!!! The bf was awesome. He just held me and then when I was calm took me around the corner to the local Denny's to carbo load - mound of french toast, hash browns smothered in cheese - and pound hot chocolates. Oh the hot chocolates they did come!

I am hoping the pity parties are out of my system. But I think they will be back at some point. Just hopefully not for awhile. Maybe they should take a break too.

I was really worried what I would do to fill all my daylight hours. What does one do while on disability but their disability is intermittent? And after a few days of it, realized this was the right decision. As I have spent most of my daylight hours on the phone, hunting down prescriptions, filling out paperwork, sitting in doctors offices, all to get everything organized and planned out. I really want to start treatment NOW!

I find that mornings I am at my best. My hands are working for the most part and I feel good. Usually around 2pm it all starts going down hill. So I take a break and after a few hours of R&R I can use my hands again. So to keep me busy beside the daily office work, I have been reading and knitting. And have actually made some great progress on a pair of socks! The Berry Season sock!

I even managed to finish the heel flaps while at the oncologists office yesterday. Which BTW went well. Looks like I should start treatment next week. Just as soon as I get the meds (which is more of a headache than it should be). But the treatment is just going to be unpleasant. Supposedly during the first few infusions, there is a high chance you get an allergic reaction to the drug. YAY FUN! Thankfully, I only have to do this twice. I just want it over with!

Ok, must re-call pharmacy and find out where's the Rituxan?!

05 March 2009

Picking Your Superpower

Wouldn't it be great, if you were a superhero and you could pick your powers? I have been thinking about this quite a bit this week. Mostly, because I am wrapping stuff up at work and there is never enough time. I find that I am being very productive, but items have a way of slipping themselves into the day. Chasing files down, calling tech support because administrator privileges are not really administrator privileges?, writing SOP's and all that last minute training and the transfer of knowledge. Secretly, it is a little fun. Running from place to place, getting things done. I just find that time is limited and that I really need a nap around 2pm.

The other super power I would want, besides the ability to stop time. I mean, really, what more could one ask for! With time stoppage, anything is possible, right?! But, no, I want more. My BLOG, I get to be demanding!

So here it is: I want the ability to pick the body part that gets to act up, that by the end of the day is swollen and tired. I am over the whole swollen elephant hand look and feeling like walking on pins n needles. Now, I know this is silly, but I really do want this...Alright, here it is, what I really want...so what I want, is my ass back! I would like all of the swelling to just move from the hands and feet and go straight to my butt. This would save me time! No more running around and having to stop to pull up my pants. All of my pants would fit (at least better than they do now) and I could use my belts. Weight loss is great, I am all for it, when it is healthy and not done because one's body feels like doing itself in.

Signing out now, thinking happy thoughts of days when the pants will fit again and there will be enough time in the world to get everything done.

03 March 2009

Wasting Time

With everything going on, I have quite a few decisions to make regarding my own personal health care, work, prioritization of things. And in my head, it seems like it should all fall within a nice comfortable time line. Imagine GIANT GANT chart in my head with things like doctors appointments, work appointments, chores, SLEEP, NAPS, FOOD, etc.

Time lines and plans make me happy. I really like these things. I am not always great at following them, but they give me comfort. This week has been a little uncomfortable as I am realizing I can not plan for the unknown. I have no idea really as to the actual START date of my treatment, for instance when do I need to take days off work, how many days, etc. What will the drug do to me? Then there is dealing with my crazy hands which keep acting up. I was hoping that they would stop swelling, but every day it ends the same, with giant pincer claws as hands.

But today, I had a doctor's appointment. It was in the "schedule". But Quest did not get the lab work transferred to the doctor in time and fax machines were not working, and I ended up getting a bit of knitting done at the doctor's office while I waited. But now I need to schedule another appointment to make up for this one. Oh well!

Later today I find out that the steroids are keeping some things at bay, but not everything. I really need the Rituxan treatments to start to see if they will work and keep the pincers at bay.
Great news = all is approved by the health insurance, the powers that be!
But the Rituxan should work for the RA, not necessarily all of the other pieces. I am a little concerned. But there is a worry about over exposing my body to too many drugs at once.

So as you can see, the time lines in my head are constantly changing. I am not sure how all these pieces will fit in. I do know that I will just have to make time. It will all work out in the end :D


My home computer decided to join in on the drama. It was jealous and needed some TLC. To prove this to me, she got a little virus. And for those of us not very computer savy, like me, a little virus is a lot a pain in the butt. Best part, I had the same virus on my work computer. It was not until Monday evening that my home computer was finally virus free! YAY!!! No more disgusting talks about re-installing OS.

This weekend was rather awesome. And it is all because of you! I have to say I have amazing family and friends who are supportive in ways I could not even imagine. Thank you to everyone! Thank you for the calls, emails, IM's, cards, flowers, candies, and warm thoughts.

The work week ended with Girl Scout cookies. What a way to start the weekend. What is better than GS cookies???

Then there was an impromptu visit from my family and they brought my 2 1/2 year old nephew over. He was great, giving lots of hugs and kisses and he even brought me more chocolate and flowers. It was just nice to relax and play and not think about any of this craziness.

The next day, the bf and I are trying to be productive, but really sucking at it. I managed to lay around and read while he played video games. I think it was just what we both needed. And then we got the surprise in the mail. An Edible Arrangement! This thing was just all full of awesome as you can see!

Doesn't this thing look so scrumptious?!

It really was yummy! Many thanks to MKT, Barb and Miss T for the wonderful surprise. I had many ideas of sharing these luscouis strawberries and fruits with others. Maybe bringing some in to work on Monday... But then the not sleeping happened on Sat night... And the hunger... And a 3am snack of chocolate covered strawberries just hit the spot! It really was better than consuming GS cookies all night. (I can't believe I just said that!)

The weekend just kept getting better and better. Even without really getting enough sleep, I felt good. I was able to catch up with some good friends on Sunday who I had not seen in a while, one visit was planned and the other was a surprise from Florida. It was really nice to visit with people, face to face.

Chores are behind, I am still not sleeping, but I am feeling better thanks to all of the support.

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.