Friday, July 30, 2010

I'm a User

I am now officially a user of Enbrel. The first shot went smoothly and the home nurse sent out by Enbrel said I did "excellent".

I signed up for Enbrel support and received my needle box yesterday. Unfortunately I signed up after paying my $50 copay. But hey, insurance saved me $1910 for a 30 supply so $50 seems like pocket change, right? As part of the Enbrel support the next six months will be copay free and then just a $10 copay afterwards. Enbrel has called several times to make sure everything is okay and let me know about their free services. At first this was nice but is now starting to feel a little freaky. Last night Walgreens Speciality Pharmacy called to see if they could be my "middleman". As my "middleman" they would call and remind me when it is time for refills and then set them up for me. I told them I can handle that part on my own. Poor Methotrexate never got this kind of royal treatment. Hopefully this drug lives up to all the attention it is getting.

Thursday, July 29, 2010

Today is the Day

My sister Stacey has been visiting since Wednesday. We have had an awesome time so far. My energy level has been amazing and my pain level low. (I am at ten weeks on Methotrexate.) This makes me extremely happy. I have enjoyed making meals together, talking, sight seeing, morning walks, and just hanging out. Her visit has been good for me.

On Sunday I received a call that my Enbrel prescription was approved and ready to be picked up. Yikes! My rheumatologist said it would be two to three weeks, not days to have it approved. As my sister and I headed over to pick it up I felt this sense of anxiety. I told her, "It isn't the anxiety you are thinking it is." She has patiently listened and lent support to me over the years as I have shared my concerns about the side effects of RA medications. On Sunday my anxiety wasn't coming from the side effects. I am finally at peace with those possibilities. While driving, I felt this sense of anxiety that this drug might actually really work and if it does, that could change my life. The longer I am on methotrexate the better I have been feeling and the more I have accomplished. I love this feeling. So, what if adding Enbrel boosts me up to the next level where I can sit on the floor again, go bike riding with my family regularly, stir our dinner without pain in my wrist and shoulder, workout or even make a complete fist again. The thought of these possibilities overwhelmed me and I felt myself tearing up. I don't want to place too much hope that I will be amazingly better, but others have felt this way after starting Enbrel so it is possible.

This afternoon a nurse sent by Enbrel will be coming out to the house to show me how to do the injections. I actually feel excited. I am glad that my sister will be here to ask the questions I might forget and to lend support as needed. I have gone back and read posts from other bloggers about icing the injection area before giving the shot. I am so grateful for that information. Wish me luck today that all goes well! I feel optimistic that it will but knowing I have lots of positive thoughts backing me up gives me that much more strength.

Thursday, July 22, 2010

The Appointment

If you are anything like me, once you acknowledge that you are angry and experience the anger, it is so much easier to move on. Yesterday I felt a lot of anger and I shared it with my blogger friends. As I joined my homeschooling friends, I still felt the anger but as I checked messages on my iPhone throughout the day, I felt tears forming as I realized I didn't have to share this with others because I was getting so much support and encouragement yesterday from those of you who are experiencing the same thing. Thank you so much if you responded to my post yesterday. I needed to hear your words more than I knew.

Today was my appointment with the rheumatologist and I wasn't angry when I went to the appointment as I expected. My heart felt calm and as I talked with her I realized that my PCP was very smart in recommending a new rheumatologist to me.

Dr. J. started the appointment by asking, "Does the weather bother your joints?" (First rhuematologist said research didn't support that theory when I brought it up.") Then she totally won me over when she said, "this is up to you," before presenting any of her recommendations. We went over my recent lab work. My inflammation rates are still really high. We discussed how I have a lot of daily hair shedding and nausea the morning after taking methotrexate. Then she really won me over. She stood up and felt my hair and said, "If it continues to thin out, we will take you off of it." (When I had the same side effect with rheumatologist #1 in 2004 he said, "Oh, it is hard to tell since you have so much hair." I felt like I was making it up until my hairdresser asked if I was taking hormone therapy because it had thinned out so much). I appreciated that Dr. J. acknowledged that this is a concern for me and decided against increasing the methotrexate.

We then discussed Enbrel. I teared up as usual. She said, "These are scary drugs." BINGO! She was validating my concern. Rather than scaring me, it calmed me that I wasn't overreacting to the side effects of these drugs. We then discussed how RA has progressed even in recent months.

I left my appointment feeling calm and ready to start treatment. I feel optimistic. I feel like all the work I have been doing the last two years has not been a set back but instead preparing me for now. As my immune system is suppressed by the new drug, a good diet is going to be needed more than ever. Having a strong relationship with my naturopath to work on supplementing side effects of the medications is more important than ever. Yesterday I felt like I was taking steps backwards but today I see that I have only been preparing myself for today.

Wednesday, July 21, 2010

Feeling Angry Today

I realized on my walk this morning that for the last few days I have felt angry.

Tomorrow is my appointment with the rheumatologist and I have decided to listen to what she wants me to do and then follow it. This, along with a list of other things this morning makes me feel angry.

I feel angry that yesterday when I was sitting with friends I ran my fingers through my hair and the hair kept falling onto my clothes reminding me that even when I am enjoying myself and forgetting about RA, it is still there. I am also angry that I then couldn't stop running my fingers through my hair to see if it would stop falling out. It didn't.

I feel angry on Saturday mornings when I wake up to nausea from taking my methotrexate the night before.

I feel angry that on my walk this morning I was hit with the scent of some one's dryer sheets. I try so hard to keep chemicals out of our house but still get hit with them, even when doing something as simple as taking a walk.

I feel angry that our dog Izzy has to walk through fertilizers in order to get exercise. Our holistic vet mentioned that Izzy's recent all night vomiting could have been from something as simple as licking fertilizers off her paws.

I feel angry when I read alternative newsletters that say with a little work and determination I can heal myself. (Well, I still believe the body wants to heal but feel angry that with all my work my rheumatoid arthritis has become more severe rather than improved.) I just feel angry reading articles that make it all sound so simple.

I feel angry that I am no longer Steve's bike riding partner. I truly miss riding with him but so thankful that it is my son Alexander who has taken my spot.

I am angry that we are continuously pouring out money to make sure our family has foods that will fill them up with nutrients rather than sugar and artificial ingredients and that we have to pay extra to have clean water to drink and bathe with. Shouldn't everyone be guaranteed these things?

I feel angry that if I don't prepare my own meals I have no guarantee that I am eating meat that was humanely raised or veggies that were grown without pesticides or washed without chemicals. I often wonder how years of being exposed to chemicals contributed to my compromised immune system.

I feel angry that in the last few months I have enjoyed some meals out with family and friends and immediately PMS symptoms returned. I am also grateful for this because it does remind me that clean eating does pay off.

This is a list of what makes me angry today. I don't like putting negative energy into the universe for others to read and apologize to my readers. Yet, I felt this need to share today. I feel I needed to let this anger out of my body so that I could find the real reason I am angry today because the list above are things that bother me on a daily basis.

So, what I am really angry about today? I am angry that I wasn't one of the rheumatoid arthritis people that succeeded without drugs. I wanted so desperately to be different. I wanted to be unique in my approach to rheumatoid arthritis and felt deep in my soul that I would be different.

I ran into a holistic friend the other day that asked how I was doing. I said, "I am back on meds." She replied, "You really gave it a good try but it is nice to know the drugs are there to help." I felt a sense of relief that she seemed to understand the commitment I have made to dealing with this alternatively but also felt ashamed that I wasn't able to make it work.

Yesterday I read a commencement speech given by Erica Goldson, a valedictorian in New York. It is definitely worth reading if you have any interest in education. She started her speech out with the following story:

There is a story of a young, but earnest Zen student who approached his teacher, and asked the Master, "If I work very hard and diligently, how long will it take for me to find Zen? The Master thought about this, then replied, "Ten years . ." 
The student then said, "But what if I work very, very hard and really apply myself to learn fast -- How long then?" Replied the Master, "Well, twenty years." "But, if I really, really work at it, how long then?" asked the student. "Thirty years," replied the Master. "But, I do not understand," said the disappointed student. "At each time that I say I will work harder, you say it will take me longer. Why do you say that?" 
Replied the Master, "When you have one eye on the goal, you only have one eye on the path."

As I read this story I realized that since my diagnosis in 2004, I have only had one eye on the path. My sole goal has been to get off medications and stay off medications. There hasn't been any room for anything else. My naturopath realized quickly this high expectation I have placed on myself and asked me to list what I am missing in my life that I would like to change. Hearing my list, she recommended going on medications for now. What I like about her approach with me over the rheumatologist's is to stop thinking of this as a life sentence. Right now my goals are stating that I want a better quality of life and I am emotionally and physically drained from trying to do this without medications. So, think of this as a two year investment in feeling good and doing the things in life I want to be doing because in two years, who knows what other holistic paths I will have discovered that may allow me to reduce or wean off the medications again or perhaps scientists will discover some amazing new research into rheumatoid arthritis. There is hope for my future with rheumatoid arthritis.

This all makes sense and I want to accept it, but I haven't. So, this morning I feel angry and I am sure I will feel angry tomorrow as I go for my appointment. But, the good news is my sister arrives tonight and I will have hours to share these thoughts with her and in her amazing way, she will make me feel better.

Saturday, July 17, 2010

Rheumatoid Arthritis Update

Now that I have been on Methotrexate eight weeks, I went in for my required blood tests last week. I truly haven't missed having my blood drawn the last two years of being off meds. The nurse called Wednesday to let me know my liver panels look great but my inflammation rates are still pretty high. I see the rheumatologist next week. The nurse said she will want to discuss increasing Methotrexate and probably adding on another medication.

I am not surprised at the results. Honestly, I told my husband after having the tests run that I expected them to be high. I have definitely been feeling better overall and enjoying some of the things I haven't been able to do in a while, but there is still an overall pain and the last few weeks it has been intensifying again. Plus, I can't get the swelling in my fingers and right knuckle to go down. And I continue to get cysts (not nodules, although I do have one of those, around my wrists and ankles. My PCP said it is fluid from too much inflammation. Not attractive at all.)

I am not sure how I feel about increasing and adding on meds. My mind changes everyday. Overall, I feel tired of worrying about it. I have made a list of concerns I have with increasing Methotrexate such as continued hair shedding and nausea. I emailed my naturopath yesterday and she said she doesn't recommend medications very often but she feels in my case I need them and she will help with controlling side effects.

This weekend, I am going to let it go and just enjoy a relaxing weekend with my family. Until I hear exactly what the rheumatologist wants to do, I am really just wasting my time worrying. Plus, I am seriously getting tired of hearing myself talk about RA. I will update everyone on Thursday.

Wednesday, July 14, 2010

Seven Days!!!!

In seven short days my sister Stacey and her family will be here for almost a week and a half. I am so excited. Stacey's husband is driving with her from Kansas, staying a few days to do vacation stuff in Chicago, and then flying home for a week. That means I get Stacey and her two boys all to myself (well, I will share with my family).

We plan on doing a few fun things but overall it will be a relaxing week of just hanging out and talking. I feel giddy with excitement.

Tuesday, July 13, 2010

Spending Time with My Gal!

Several weeks back Sophia and I spent the day eating Sushi, getting manicures/pedicures and then out for ice cream. Spending a day with Sophia is one of my favorite things to do.

Wednesday, July 7, 2010

Exercise Slowly Returning

I seem to be having more good days than not lately so I have slowly been taking advantage of the good feeling and trying to get back into an exercise routine. I am walking an average of two miles a day with Izzy and riding a mile a day on my bike. Alexander is doing his first 5K in October so I am riding beside him as he runs. A mile isn't that far, but as many of you know, bike riding takes a lot of joint work. Your fingers have to be flexible enough to brake and change gears, your shoulders have to be free of enough pain that you can balance yourself and of course your knees need to do lots of work. A mile seems sufficient right now. I am happy that this short workout involves spending time with Alexander. Also, I did an arm workout the other day. I used really light weights. And finally, Steve painted the majority of the house over the 4th of July weekend and along with helping with some of the painting, I did a lot of cleaning and lifting. By the end of Monday night I didn't think I was going to move. I decided to take a contrast shower and it helped tremendously. It feels good to be moving my body a little more.

Visit with My Primary Care Physician

Yesterday I saw my family physician. I really like him. He is about my age, maybe even a tad bit younger. He smiles a lot and talks about himself enough that I get a sense of who he is outside of the office but not so much that I feel like I should be charging him for the visit. (I did once have a chiropractor that talked nonstop about herself. ) He isn't one bit into the alternative world that I would like to totally immerse myself in, but he seems to get a kick out of me because of my alternative beliefs.

We started off the appointment with him reading through the notes from my rheumatologist. I wanted to cry as he read through everything but I didn't. We talked about my concerns with methotrexate and the possibility of biologics which the rheumatologist listed as something to consider. He asked me what I thought about that idea. I love that he listens to my concerns and acknowledges that my concerns with these drugs are something that I should worry about. Next, I showed him the bumps on my ankles. He said they are fluid from my ankles and then asked if he could see the nodule on my elbow that the rheumatologist mentioned in her notes. He said he hasn't actually seen one in person. Delightful! I'm his first look at a nodule.

He took another look at my complete blood count that I had a few months ago and said my results are "insanely perfect"! Yay! Eating well is paying off. Then he suggested doing a yearly flu shot. I said, "No thanks." Then he suggested a pneumonia shot. I said, "No, but thanks for asking." He laughed. Later he joked, "Let's see what other shots I can give you." Next on his agenda was to order a mammogram. I started to share my views on mammograms at 42 years old and then stopped thinking "I don't want to go against everything he suggests." He said, "No, go ahead." I shared some of my views and he shared his and he left it at, "I would like you to have it but it is your choice and I won't be mad if you decide to wait." I like that. I like sharing our views with each other and then ultimately leaving the decision up to me. Oh, and by the way, when doing some additional research to support my views I found this site: Breast Cancer Action "a national education and activist organization that challenges assumptions and inspires change to end the breast cancer epidemic."

Overall, it was a good appointment and I feel happy that I have a doctor that at least listens to my views and seems to respect me, even if he might think I am totally nuts.

Saturday, July 3, 2010

Getting Real with Food

I loved what this blogger at Getting Real with Food had to say about Food Inc. If you have time, check her out.

Friday, July 2, 2010

What did you like about your day?

When my kids were younger, we had a nightly routine where all four of us would snuggle together in bed and answer the question, "What did you like about your day?" I learned a lot from the answers Steve and the kids gave. They were always so simple. We may have had a busy day with lots of money spent on an activity and the favorite part of Sophia's day would be "riding on Daddy's backseat." (Backseat was Sophia's way of saying Steve's shoulders.) Alexander might say, "Showing momma and daddy my new Lego creation." Steve's answer would be something like, "When I played XBOX with my little buddy." I learned from them to look for the little things in the life.....the simple everyday events that bring us endless joy.

Here's my "What did you like about today?" from yesterday :

~A friend sent a link to a rheumatology office in Michigan that does alternative care. My dream is to have a naturopath/rheumatologist team and here is the very first one! I don't live in Michigan but this gives me great hope for Chicago and if I want to drive 4.5 miles, I could even make it a reality now!

~At the swimming pool I heard a mother very gently explain to her toddler that it is unsafe to run near the pool. It makes my heart happy when I hear mothers talking to their children with respect and not yelling at them.

~I went to bed with clean sheets last night.

~The pieces of WWII are coming together for me as Alexander reads and explains to me. I love learning from my kids.

~My body craved the sun yesterday and I honored it with a long walk and time at the pool with the kids.

~Sophia gave me a long hug. It felt good.

~Steve went out after work and enjoyed some time with his co-workers.

What did you like about your day?