Monday, January 31, 2011

I Am A Different Person Now

I had an appointment with my rheumatologist today.  It was a little weird.  I didn't have any of the anxiety I often have with appointments to this office.  In fact, I was very calm.  She went through her routine of questions and had me do my routine of movements.  They were all so easy.  Last year at this time I was struggling to get on the patient bed because my shoulders and wrists were in so much pain. I remember they lowered the bed and then it hurt my knees to bend down.  Today everything was easy.  In fact, I didn't have a second thought about jumping up on the bed. The only complaint I had was about my feet and toes which have been hurting quite a bit the last few weeks.  She gave me a referral to see a podatrist.  I will think on whether I want to go that route or not.  My white blood cell count was down in previous blood work, but is within normal again.  In fact, all of my blood work is "really good".  She was happy I haven't been sick at all this winter or suffered any infections.  My last chest x-ray did show some scarring.  I am not really sure what that means, but she said we will do yearly x-rays to monitor it.  She also took a look at the nodules on my elbow and shoulder.

Towards the end of our visit she asked me to explain how difficult it is to get out of bed.  It was with this question that I realized that physically and mentally I am a different person than I was eight months ago.  I am different because when she asked that question I realized that I don't think about getting out of bed anymore. (Tears of happiness streaming down my face right now as I say this.)  It is just a normal routine for me again.  I no longer wake up and wonder how I am going to roll out of bed without crying in pain.  I no longer worry about my joints being so stiff and weak that they won't help me out of bed.  Rheumatoid arthritis pain no longer consumes my every thought and action. I am different now.  I know that at any time I can wake up and be that person again and it does scare me, but I am where I am now and it is a great place. 

Feeling constant pain bogged down my mind more than I ever imagined and it took being free of that pain to realize the happiness I feel at this very moment.  My rheumatologist kept asking me questions about pain and finally I just said, "Really, except for a few minor flares, life feels normal again." I have come a long ways and I can't stop feeling giddy with excitement at the little gifts that life has given back to me.        

Sunday, January 23, 2011

Date Night

For the first time in 14 years, Steve and I planned an overnight trip alone without kids.   We didn't go far, just thirty miles away to a hotel located in downtown Chicago, but it felt like we were far away from home and all responsibilities.  I hope to have many more date nights like this with my husband.

Steve made reservations at a steakhouse a couple of blocks from the hotel, but with the windchill around -15, I  couldn't handle the cold, especially in a dress and heels.  Instead, we stopped at the Italian restaurant right outside of the hotel that just happened to have a gluten free menu.  Less fancy, but still incredibly enjoyable.

Here we are in the hotel.  I am wearing one of the dresses that Steve bought for me last month.  He saw me when I tried it on at the store but surprised me once again by being in total awe of how I looked in the dress.  I honestly have the sweetest guy ever.  I want to wear dresses all the time now!  Also, I am carrying a purse given to me by my grandma.  When I was a little girl, I would ask her if we could go visit the purses in her basement.  She would always satisfy my need to see them.  Together we would walk down the stairs.  I knew exactly where they were located, but never walked ahead of her.  I always respected that it was her job to get the box of purses down and share them with me.  Inside the box were about five purses she used during her younger days when she and my grandpa went out partying.  Several years before she died she told me she had something special for me.  She wanted me to have her purses.  This has always been a gift that I have treasured like no other.  I still get them down from my closet occasionally and just starting using them in December when we attended holiday parties.  I am guessing they are around 60-70 years old and still absolutely beautiful.   

Friday, January 21, 2011


Tonight I have a somewhat spontaneous date planned with my husband of 22 years. He has planned everything. My only responsibility is to make sure the kids have food for the evening and to make myself beautiful.

I woke up early this morning excitedly thinking through what I want to do to make myself beautiful for this evening. One of the things on my list was to paint my toenails. As I began the process of painting, I studied my toes. Despite the huge reduction in pain and inflammation recently, my toes are experiencing some physical changes and as with all change, I experienced a moment of panic. “Where are these changes taking me? How can I stop these changes? I’m scared.”

I took a deep breath and as quickly as the panic took over, I was able to focus that breathe back on my evening plans. All the panic and fear disappeared. In that one instance I knew that it didn’t matter what changes rheumatoid arthritis or even age have to throw at me because in the eyes of my husband, I am the most beautiful person alive.

My sister just sent me a text that says, “Isn’t it awesome to still be giddy about a date with your husband after all these years?” It is awesome. It is awesome to not just feel giddy, but to know that throughout all these years together we have developed something stronger than my heart could have ever imagined possible.

Saturday, January 15, 2011

P90X, Paleo Diet, and Rheumatoid Arthritis

Yesterday was day 90!  Steve and I completed the full 90 days of the P90X program (minus their diet plan and shakes).  I am SUPER proud of myself.

In October Steve mentioned that he was thinking about trying out the P90X program.  He would soon stop riding his bike to work due to temperatures dropping and felt he needed something different in his workout routine.  I was two and a half months into my use of Enbrel and felt my body needed to get back into a workout routine. After about a two and a half year break from any regular exercise or even much movement in general, my body felt really soft.  I felt like I wanted to work my body hard.

In all honesty, I was still having some flares when we started the P90X program and was also in physical therapy to work on mobility and strength in my fingers, wrists, and shoulder.  When I decided to join Steve in the program, I wasn't sure how much of it I would be able to do and told Steve if it was too much I would stop.  There was only one day in the first month that I wasn't able to workout due to a flare.  I think that is pretty amazing considering this time last year I was struggling to get in and out of the car. 

In the beginning, I did have to make some adjustments.  I started off with extremely low weights or no weights at all and always followed the modified moves.  But, as we continued waking up each and every morning, I felt my body gaining strength.  The pain and stiffness in my shoulder left.  The weakness in my wrists disappeared. After several weeks of doing the program, I was pleasantly surprised to realize I was no longer doing the push-ups on my knees and with time my body told me when it was ready to add more weight.  I am still working on getting those fingers to bend completely, but that will come with time.

This exercise program is the most difficult workout I have ever done on a regular basis. Before this more than two year flare hit me, I worked out regularly, but never like this.  This program changes daily and works every muscle group. Just when you think you can't take it any more there is a yoga day, a rest day, or a stretch day.   I am not sure that my body needs to be worked to this intensity on a daily basis, but it feels wonderful to know that I can do it and I DID DO IT!  

Along with doing P90X, I have continued following The Paleo Diet which I love!  I don't even think of it so much as a diet anymore, but a lifestyle that makes me feel good.  I have followed the no grains, dairy, legumes, and sugar at about 98%.  Instead of consuming these foods, I have been filling my body with tons of veggies, meats (fish, chicken, beef, lamb, and pork) and plenty of good fats.  Yesterday I was at an all day meeting where we were to be fed pizza.  I packed a lunch of meatball soup in a thermos, Applegate pepperoni wrapped around baby carrots, two clementines, a Larabar, water/tea, and beef jerky from Trader Joe's that I didn't need.  In the past I may have felt I was missing out on something while everyone else was eating pizza, but I didn't feel that way yesterday.  I had enough foods that I really enjoy that I felt content and nourished.   Plus, I didn't feel sick afterwards.

I frequently visit Sara Fragoso's site Everyday Paleo for meal ideas. She has recipes that work in portion sizes for a family of four.  Sometimes there are even leftovers for breakfast or lunch. Her meals are amazing and I feel like I am becoming more confident in the kitchen.  Last week I created my own meal idea and it was a huge success.  It is going to become a weekly regular.   Sara has a new book coming out and just started a podcast for Paleo moms.  I also spend many mornings listening to Robb Wolf and Andy Deas at the Paleo Solution as I walk Izzy.  They often answer questions that pertain more to the heavy duty athlete on their podcast  but still focus a lot on how foods affect autoimmune disease that really interests me.  Personally, I need to understand completely why I am making the food choices I do.  These podcasts provide a lot of that information while also being fun to listen to.

I feel like I have become physically active through P90X, walks with Izzy, lots of snow shoveling, and other activities.   I have found a way of eating that fits both my food politics and health beliefs and I have found a nice combination of drugs.  All together, I am happy with how all of these different things have come together so well.  I feel awesome.

Thursday, January 13, 2011

It's the Simple Things in Life that Make Me Smile

When I look at my life as a whole, it is the simple everyday things that make me the happiest.  This sweet border collie of mine makes me smile every single day.  Whether it is early in the morning when she army crawls her way between Steve and me for some lovin', when she runs at full speed in the backyard while I play ball with her, when she is frightened by the noise of a new toy, when she follows me around the house night or day, or when she comes to me with a ball in her mouth squeaking it to say, "Let's play." She makes me smile when she runs to the door in excitement if asked if she wants to go "bye-bye" (a ride in the car) or when she listens attentively on a walk in the morning.  (Unfortunately, this doesn't happen all the time.) Yesterday she made me smile again with a habit she has of refusing to move from her spot on the driveway when we shovel.  She finds a bed of snow to lay on and refuses to move from that spot.  We shovel around her thinking she will move, but she rarely does.  Even if she does get up for a second, she goes right back to her bed of snow.   She will sit outside for long periods of time letting the snow fall gently on her body.   

Sunday, January 9, 2011

Loving With Chronic Illness: Spotlight on ME!

The year 2010 brought a very sweet addition to my life when I became friends with Maya from Loving With Chronic Illness.  Although we have not yet met in person, the smile she shares on her blog along with the  positive energy that oozes out of her in personal emails has been a much needed addition to my list of friends and support.  She is definitely one special gal to have in your life. 

Today I am honored to be a part of her "Spotlight on Chronic Illness."  Please check out the wonderfully nice things she has to say about me here as well as other amazing people she has shared in her spotlights.  Also, if experiencing any chronic illness, you will want to read other posts by Maya where she shares some of the ups and downs of living with Spondylitis as well as some of her poetry. 

Thanks Maya for sharing me in such a positive light and for being such an awesome person. 

Friday, January 7, 2011

Rheumatoid Arthritis Anniversary. It's Here Again!

January always marks the anniversary of my rheumatoid arthritis journey. When I think back to the beginnings of this journey an image of myself waking up time and again throughout the night wondering why my fingers hurt so badly and wouldn’t bend always comes to mind. I remember going through my days trying to figure out what I had done that would make my fingers so sore, swollen, and stiff.

I also remember the extreme fear I felt when my initial appointment finally arrived with the rheumatologist. It had taken four months to get in with him. When I scheduled the appointment all the new patient paperwork was mailed and I filled it out immediately. Before going in for my appointment, I reviewed what I had written several months back and realized that within four short months I went from sore fingers to stiff knees that struggled to get down the stairs and shoulders that could no longer help me undress without assistance.

I remember the rheumatologist telling me he was pretty certain I had rheumatoid arthritis. I went home and read everything I could on the topic. My family physician called me on my cell phone at 9:30 at night when I got off work to confirm. I remember sitting in my car hyperventilating I was so scared.

Fast forward to January 2011 and I finished a workout this morning with my husband, I will be walking our dog Izzy shortly, and then I will complete a long list of things I want and need to do. I am full of energy and doing better than I have in years. Getting to this point has not been easy. In fact, it has been the most challenging thing I have ever experienced. It is also one of the things I am most proud of.

When I began reading about rheumatoid arthritis, the things that scared me the most were the deformities (no longer a fear of mine. I know they are happening, but I can deal with them now.), the medications, and the fact that I could not find one single story of anyone that was doing well with rheumatoid arthritis. Why would I want to take medications with extreme side effects when it didn't sound like it helped anyhow? I did take them though because I was scared. I was scared that I would never be able to take my daughter's hand and skip with her again and I just couldn't risk that outcome.

My RA journey has taken me many places. I found success following an anti-inflammatory diet along with meds for several years. I attempted to go drug free with some not so great results, but something I would do again and have absolutely no regrets about. As of last summer, I am back to an ant-inflammatory diet along with medications and doing great!

What I hope to share on my blog for other chronic disease folks is hope. When I went back on medications last summer it took a lot of encouraging from my naturopath. My biggest fear was that they wouldn't work and all the hard work I had done to be drug free would be lost. However, they are not only working, but they are working really well for me right now. Sometimes I hesitate to share how well I am feeling because I would never want to feel I am rubbing it in someone's face who is really struggling right now. Also, there is always a fear that as soon as I share how great I am feeling, I will wake up and not be able to get out of bed.

When I decided to go back on medications, I made a two year commitment to myself. If the drugs didn’t work, two years would give me time to experiment with other ideas. If they worked for even two years and then the effects wore off, then I would accept that I was given two wonderful years I might not have experienced otherwise. I have to enjoy life to the fullest while I have the ability because I now realize that any day it could all come to an end. I need to have memories of fabulous days to guide me through the rough patches. I need to see in writing that not every day of rheumatoid arthritis is awful. I think as chronic illness bloggers we often use our blog as a way to share the down times. I have even seen bloggers absent for months and then return when they are feeling bad again to say that they hadn't been blogging because they were out enjoying life. On my worst days, when I read something I like that I would smile in happiness for that person and wonder, "what does living life with RA mean when you feel good?" I needed to read those stories just as much as I needed to know that I am not alone in my pain.

I have recently been given a very special gift. I have been given my physical life back. I told my husband the other day as I was skipping along next to him that in the last six months I feel like I have gone from being an elderly woman to a vibrant young woman again. My body is doing amazing things right now and with that comes a mind that feels open to possibilities again. I feel like I must share these good times. I don't do it as a way to brag, but because I know how desperately I needed to read the success stories when I was diagnosed and as I moved along my journey. Due to all the horror stories I read, I stopped reading anything about RA until I started my blog here and found wonderful people that understood how I felt. I feel like we must get stories of success out there to give people hope, even if they are only one day stories of success. If you are one of the bloggers that shares what happens to you on good days as well as bad, "Thank you". You have inspired me and kept hope alive for me on days that seemed impossible. During my worst days I needed to know that RA folks were still out enjoying life with their family and friends, that they had hobbies, and that they enjoyed simple things in life. I needed to know that my life would not be consumed by disease. This disease tries to take so much from us, but we are strong and we can keep fighting. For me, it has to be through positive images and postive thinking.