A Good Scare

Rituxan treatment yesterday. As the treatment was finishing up, I started to lose feeling in my arms and legs. It was a weird feeling. It is hard to describe. The areas between my elbow and hand on both arms and between my knee and foot on both legs, had a strange pressure sensation. It felt as if that part of the body was not there. I could walk and use my hands, there was no signs of a lack of circulation in my fingers or toes. It was a strange paralysis that would occasionally creep further.

I was worried enough to call the on-call doctor at the clinic, and luckily my doc was on call. He was definitely concerned as this is not a typical side effect with the drugs I was given yesterday. And I was told to go to the emergency if it proceeded to get worse and did not show signs of relief by morning. What a scare!

Over time, the feeling of paralysis left my legs and by morning it had left my arms. Now I am left with a tingling sensation running up and down my arms, from shoulder to fingertips.

I am scared. The lack of sensation, the lack of control that came with my temporary paralysis was unnerving. I am planning on calling the neurologist next week to see what is going on. His secretary probably already thinks I am crazy, as I kept calling her last week to get some information. Oh well. This call needs to happen. Crazy or not.

As scared and worried as I am, I am really thankful for what I do have, for the life I still can live, for the strength and functionality I still have in my body, for the love of my bf and my family and friends. Yesterday I was just reminded how quickly it can all go away. So tonight I am going to celebrate life with friends. And continue this celebration as long as I can.

I still have a lot left to live for!

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...

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...

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.

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...

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.

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?!

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