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).

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.

Progress

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.