Wednesday, June 30, 2010

RA (and my daughter) Always Teaching Me New Things

Yesterday is history. Tomorrow is a mystery. And today? Today is a gift. That's why we call it the present. ~Babatunde Olatunji

It has taken me six years but I think I have finally learned a few very beneficial lessons for me regarding rheumatoid arthritis.

1. Rather than always looking for a way out of this disease, I have come to realize in the last month that what works for me right now is to eat healthy the majority of the time and not feel guilty when I don't, take my supplements and meds as prescribed and most importantly, RELAX about this disease. I put a lot of pressure on myself to always be on the lookout for new ideas on how to get myself out of this disease. I have finally come to the point that I am okay relaxing and letting things be. (This may be a temporary, but I hope it lasts a while.) When I started feeling good a little over a month ago, it was when I stopped worrying about everything and felt a sense of peace with where I am.

2. After a month long break (mostly) from RA symptoms, I started having some downhill days again. They aren't as bad as a few months ago and are very unpredictable (changing throughout the day) but they have slowed me down a little. My wise daughter Sophia said, "Well, at least you had a whole month." She said this sentence as if I should be proud of myself! This made me think about my actions during my "whole month". Rather than focusing on when the next bad day would come or feeling depressed that the streak might end, I focused on each and every day that was good and felt appreciation for little things like walking the dog, reaching a set of bowls, or the extra smiles I was able to give. I appreciated my good days 100% as they were happening and didn't worry about tomorrow. As some rough days sneak back into my days, I am realizing that I can use the day as a day to pamper myself with TV shows I enjoy, long naps, reading, cuddling, take out food, laying in the sun, etc. In the past I might have felt guilty or frustrated with my body for this kind of leisure time but now as I plan ahead for these days, I almost feel excited. It's like planning for a mini vacation. On Tuesday I asked a friend who usually picks my kids up for homeschool group (I meet them after work) to also bring the kids home. I left work and came straight home and took a long nap. Although I am sure I was missed (smile), everyone seemed fine with me taking the time off and I was able to give so much more of myself to my family that night. (Thanks Dee!)

This new way of thinking as taken a lot of pressure off of me and in reality made my symptoms relax also. I have always said that Sophia is the one in our family that helps us "live in the moment". I have spent too much of my RA life worrying that I have lost my life from before or worrying about what will happen in the future. This last month and a half I have spent just enjoying my good days as they are happening and being good to myself on the rough days. I am proud of myself and proud that Sophia brings out that feeling inside me. The present truly is a gift that needs to be treasured. It is a lesson that is long overdue for me, but like everything in life, comes when it is ready.

Thursday, June 24, 2010

Positive Thinking

"All that we are is the result of what we have thought. The mind is everything. What we think, we become." - Maharishi Mahesh Yogi

My dad, who is facing some serious health issues, recently said something like, "I have had a good life. Things have always turned out good for me." When he said this, I thought, "Do good things really just happen to him or is it a matter of the way he thinks?" Is it possible that the same situation could happen to two different people and one would think things turned out good while the other felt his/her life was doomed?

My mom has a severe case of fibromyalgia. It would be so easy for her to feel that her life is doomed. However, at almost 70 years old, she gets her cane out and lives life. She recently returned from a 10 day trip to England. She ended up having to use a wheelchair more than she would like, but she didn't let that stop her from seeing the things she wanted to see and enjoying the company of the people she was with. In fact, she has several more trips planned this year in and out of the country.

I have been fortunate to not only have parents and siblings that view life in a positive way, but my journey in life has led me to numerous homeschooling friends, bloggers, spouse, children, educators, alternative care providers, etc that see the positive in every day living and even in the obstacles of life. I find myself wanting to soak of the energy of these positive thinkers.

Rheumatoid arthritis has been a struggle for me. There are days I am upset that it chose me (or I chose it). But most days, I realize that RA has helped me grow as a person. It has led me to wonderful people. I have learned so much about food and nutrition that also helps my family. It has exposed others to alternative lifestyles. It has been a positive in my life and when I seriously look at all the positive things that have come from rheumatoid arthritis, the list is long.

I think there is always one thing we can count on in life and that is that no matter what life hands us, we always have choices. We can choose to feel we are doomed and have no luck in this life or we can view the situation as something positive. Rheumatoid arthritis is part of my life. I can sit back and feel sorry for myself or like my dad I can view life as always turning out well and like my mother, get out and enjoy every minute of it! I choose to follow in the path of my parents. Thanks Mom and Dad for being who you are!

Wednesday, June 23, 2010

Growing Up Is Fun To Do

I think I am one of the few moms that doesn't miss my children being babies. Don't get me wrong, I loved when they were babies. I loved nursing them, reading together, sleeping together, and playing together. Really, I loved everything about them as babies, toddlers, and children. I feel like Steve and I embraced each age to the fullest and rather than missing something we had, we enjoy who they are now. Plus, in reality, they are still the same basic somebodies they were then. When we look at video of them as toddlers, we still see the same person inside. Sometimes now, as I did when they were little, I find myself watching them in amazement wondering how the two of us produced something so absolutely perfect!

I love that their bodies are both changing in dramatic ways. I like having conversations with them and hearing their thoughts on topics. I love that they are making close friends while still needing lots of hugs during the day from me. I love that they have minds of their own and are following paths that suit them as individuals.

The other day Alexander was a little frustrated with me and snapped at me which he has never done. At first it hurt my feelings but then as I thought about it, I realized that he has a mind totally of his own now and sometimes we aren't going to agree on things. That's okay. He did later apologize (twice) which I told him wasn't necessary but appreciated. We were able to talk about it together. I like that too. I like that they are growing up and feel lucky to be a part of the experience.

Friday, June 18, 2010

Reason To Celebrate

I just looked at the calendar hanging from our refrigerator (each Friday that I feel good I put a smiley face) and realized today marks one month of feeling good! One month, can you believe it? Also, I am 100% off of prednisone as of last Monday.

I am waking up in the morning with very little stiffness and no pain. By early evening I have some stiffness in my shoulders and some pain in both knees but it is nothing compared to where I have been. It is strange to have easy mornings.

Oh, also, the last few years I have not enjoyed the swimming pool because when I go from the heat of the day to the coolness of the pool, it causes my joints to tighten up and I leave the pool feeling terrible. This year, I haven't noticed any changes. Maybe those contrast showers are paying off.

Anyhow, I just wanted to share my good news. I feel so lucky today!

As always, I am sending each of my friends healing thoughts today and hoping that my good feelings are contagious.

Tuesday, June 15, 2010

Following Our Passions

When I met Steve, we were both education majors. I was focusing on elmentary education and he was focused on music education. Since he was 14 years old, Steve has paid for all of his music lessons and equipment himself. It has always been his passion. Once he got to his student teaching however, he found out that teaching was not his passion.

For a few years he worked factory jobs until he decided to go back to school for computer science. That is now his profession, but still not his passion. His passion is still guitar.

Steve has been in several different bands, but trying to find people you are compatible with that also are willing to make a committment to band practices and communication can be difficult. So, about a year ago Steve decided to do a one man band. He now plays guitar and sings on his own.

I am not a musical person at all. In fact, I am freakishly not musical. Generally in the car, it is quiet unless someone asks to turn on the radio. I have no particular preference to any type of music. However, when Steve practices on the weekends, I absolutely love it. Not only do I like the sound of his voice and guitar but I love that at 43 years old he is still following his passion. I am extremly proud when friends and family come to his gigs and hear him play.

The philosophy of life we both share for our children is that they follow their passions and share the unique individual gifts they have with others. Steve is not only going to work daily to provide for us, but he is coming home and living the dream we have for our children. He does not let obstacles get in his way. I love this about him.

To hear Steve, visit his site.

Monday, June 14, 2010

Prednisone

Yesterday afternoon I was cleaning the kitchen and realized I had forgotten to take my dose of Prednisone. Oops. I have been down to 5mg and figured next week if all was going well, I would eliminate it anyhow, but since I was feeling good and didn't seem to miss the dose, I decided to make yesterday the day. Generally when I reduce Prednisone, I have flu like symptoms for a day or two with joints that are stiff. After a short nap yesterday, that is how I felt and I was a little nervous about what today would bring. But guess what? I woke up feeling less stiff than my new normal and full of energy!!!

What is weird about suddenly feeling well day after day is that it doesn't seem normal anymore. I have almost forgotten what it feels like to not have pain and stiffness and feel like I am trying out someone else's body. I like it, but I keep finding myself thinking, "IF I feel good tomorrow." I guess at this point it is natural to not let your brain feel disappointed if things turn around.

I did make a decision the other night that I wish I hadn't made. One of my goals is to be able to sit on the floor with ease. I love sitting on the floor. I tried it and it didn't turn out like I imagined in my mind and instantly felt disappointed. This is what I need to avoid. With this turn in feeling good I want to take things slowly and do only what my body feels it is ready for and rejoice in that instead of trying to rush and do everything at once. I am learning. Slowly, but surely I am learning.

Saturday, June 12, 2010

Rheumatoid Arthritis Integrative Plan- Something is Working!

Yesterday marked three full weeks of feeling good!!! When I wake up in the morning after a full night of sleep (woo-hoo) I am still stiff in the shoulders, fingers, knees, ankles and toes. But it is a different kind of stiffness than I have experienced in the past. First of all it doesn't come with lots of pain. Second, I know that with movement, this stiffness will work its way out enough that I can do most of things I want to do during the day.

I am not sure what has created this positive change in my body but I am afraid to stop ANYTHING I am currently doing. I started a few new things with my naturopath a few months back, that like Methotrexate, take time to work in the body. I am also taking a new supplement recommended by a friend and I took my fifth dose of methotrexate last night. My previous experience with methotrexate was that after 12 weeks of taking it my body was still going downhill. When sharing my fears about this drug with my naturopath she felt my body would accept it easier this time because I have changed my diet so drastically since the first time I took it in 2004. Perhaps I am not giving the med as much inflammation to work through this time and it can focus on the job it was meant to do - slow down the damage to my joints and reduce inflammation. Whatever it is, I am happy. I feel more positive. I feel motivated. I feel focused. I feel strong. I feel like me.

Here is my current integrative plan. As long as it is working, I will not be making any changes:

Contrast Showers - This has become a daily routine for me since March. The longer I do these, the more benefits I feel from them.

Wobenyzm N - This supplement came recommended by a RA friend. I began taking high doses of this at the same time as I began the Methotrexate.

Fish Oil - I have been taking fish oil since November of 2004 but in the last three or four months I have increased my daily dosage to help with the inflammation.

Ribes - Also known as black current oil. I started on this for inflammation when I saw my naturopath in April.

L-Glutamine - I have taken this off and on since 2004 but stuck with it daily in high doses since March to repair a leaky gut.

Mediclear - This is a rice based protein shake used for detox, inflammation, digestive problems and more. I started on it about a month and a half ago. When I was in remission before I used a similiar product called Ultra Inflamx on a daily basis. This makes a quick high protein breakfast!

Diet - I have been following a gluten/dairy/soy free diet for sometime but have also eliminated sugar, processed foods and most grains. What do I eat? A lot of veggies and grass fed meat!

Digestive Enzymes and Probiotics - I take these pretty regularly, unless I run out.

Vitamin D - I have been taking this supplement for a few years. I recently had my vitamin D tested and was told by my PCP that I have one of the highest levels he has seen!!! So, I have reduced this supplement but still try to get plenty of natural Vitamin D by walking Izzy for about 45 minutes every morning.

Exercise - Exercise has always been an important part of my life - bike riding, walking, weights, yoga, pilates, playing with my kids, etc. In the past when I have felt good for an extended time I have rushed back to exercise trying to make up for lost time. This time around, I am listening to my body. I am walking daily to build up my body strength and balance. My body will tell me when it is ready for the next step.

Prednisone - I have been gradually weaning off of this. If I have one more good week, I will be completely off!

Methotrexate - Last night I took my fifth weekly dose of this drug. So far the only noticeable side effect has been a lot of shedding of hair.

Folic Acid - I started this at the same time as Methotrexate since it can create a folic acid deficiency.

Friday, June 11, 2010

Anniversary

Happy Anniversary to Steve and Me!

Like most days, Steve was making me laugh in this photo. I feel lucky that for 22 years that laughter has been a part of our lives. Really, I think it is what keeps us strong. Happy Anniversary to us!

Wednesday, June 9, 2010

Balance

Having more time in flares than not the last few years, my body has lost a lot of its physical balance that came from youth, daily workouts and living life. This morning on my walk with Izzy I decided to test my current balancing abilities by using the curb as my balance beam. At first I felt a little embarrassed being a 42 year old woman walking the curb like a kid (only falling off), but then I became determined to master the balance beam. Soon, I saw myself as a little girl walking the curb seeing who could stay on the longest! What a great feeling!

Friday, June 4, 2010

On A Roll

Today marks the beginning of my third week with low pain and stiffness. I am not sure if it is the methotrexate since I just took week four's pills and the pain/stiffness reduced about two weeks ago or a new supplement that I started at the same time as the methotrexate. This supplement came up three times: a friend that works at the health food store mentioned LOTS of people buy it, a book on pain management discussed almost everything I am doing except this supplement and then what convinced me the most was when a good RA blogger friend recommended the supplement too. It seemed I had to try it. The problem now is I don't know what is helping the most. But the clinical studies showed this supplement worked well with methotrexate and people taking it generally didn't need additional medications. My goal is still to not add on any other drugs and handle this as integrative as possible. Whatever it is - methotrexate, the supplement, or a combination of both - I will accept it! I LOVE feeling good.

On a less happy note, I ran my fingers through my wet hair this morning and guess what came out? Lots of hair. I definitely didn't miss that while off Methotrexate. So, here we go with that again. I was hoping that wouldn't be a side effect this time.

But, no time to worry about hair loss. I am on a roll of feeling good and need to make the most of my good days because with rheumatoid arthritis, who knows how long the good times will last.