New Doctor

Today I met my new doctor. She was really awesome. She did everything one would expect of a doctor, but that my previous doc failed at.

We talked for an hour. About my medical history, how I was doing and any little minor annoyance she wanted to know about. She even touched me. She treated me as a whole person. Not just a paycheck. It was nice to find a very personable doctor.

The good news is she thinks I have been misdiagnosed, that is also the bad news. If she is right, things may get more complicated down the road, it may be even harder to breed, but the medications will not need to change. If she is wrong, it is still the same game, same meds and still there is always questions about breeding. I do not know which I wish for. Both options have interesting paths and both have many difficult unforeseeable moments.

Right now, I have committed to her to go for further testing. To see what is really going on. Her reasoning for the further testing is simple, to check out those minor annoyances in my life, which to her could potentially mean other issues.

So I will keep my fingers crossed and hope for the least interesting path, whatever that may be. I love adventure, challenges and puzzles, but I think I have had enough of these health adventures to last me a little while.

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.

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.

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.

ZZZZZZzzzzzzzzzzzzzzzzzzzzzzzzzzzz

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.