Sunday, April 25, 2010

Much to Be Thankful For

On this Sunday morning I have much to be thankful for:

~Alexander will be 14 on Saturday. When I look at him, I am so impressed and amazed that I had a part in creating him.

~Since going off Arava on Wednesday, the pressure in my ribs has disappeared.

~In two short weeks Sophia's performances of "A Little Princess" begin. Her part in the play is small but the experiences she has gained already are huge!

~My amazingly creative sister Sherry is back to reading lots of books and sharing ideas with me.

~Steve has a gig tonight. I LOVE watching him perform.

~In two weeks my mom will be in Chicago for a short visit. She is flying in to see Sophia's play and because she loves us. Also, my brother Mike has a meeting in Chicago and will be able to see Sophia's show.

~In a little over a month I will be married for 22 years. I can't imagine my life without Steve. He makes me smile everyday and even on my worst RA days makes me feel like the most beautiful woman alive.

~Alexander and I watched Food, Inc. last week. Watching the film sent chills through my body but also gave me a greater appreciation for the food coop we belong to where we are able to buy free range meat and eggs from farmers we trust. Unfortunately, due to overwhelming harassment by the FDA, this coop can no longer provide fresh dairy to its members which makes me very sad.

~I have a job that I really like and works around the needs of my family.

~My dad used to sing to us when he woke us up in the morning. I do the same thing with my kids. I think of my dad every time I start singing my corny made-up songs.

~Alexander is teaching me about the Cuban Missile Crisis as he learns about it. Learning is so fun when you are taught by your children.

~Sophia often has strangers tell her that she has a beautiful smile. It is true. Like Alexander, I look at her and feel amazed that I helped create her.

~In July my sister Stacey and her boys are coming for a week long visit. I can't wait!

Some days are tough for me but each day I have these amazing things to wake up to. It is great being me!

Note: Once you start listing things that you are "thankful" for, the list becomes longer and longer. Give it a try. Leave a comment of something you are thankful for today.

Thursday, April 22, 2010

Stunningly Beautiful Gray Hairs

I haven't touched on the topic of natural hair color (aka gray hairs) in a while, but wanted to share what happened today.

After coloring my hair for two years, I went totally natural - gray hairs and all. This look has felt comfortable for me. That is until a few weeks back when I saw my friend Arwen. Arwen, who went natural about the same time as me colored her hair and it looked beautiful. I see her several times a week now and with each visit I feel inspired to do something fun with my hair too.

Today after classes I looked in the mirror of my car and thought, "Maybe I should just do one of those temporary 30 day colors." Then I didn't think anything more about it and drove to Trader Joe's. As I made my way over to the produce department I noticed this stunningly beautiful woman. She was about my age but had a lot more gray hair. Like my grays, they are nice and shiny. I am embarrassed to say that I was mesmerized by her and found myself right behind her during my whole shopping trip. Finally I took the plunge, walked up to her and told her that her hair color was beautiful. She laughed and said, "Yeah, yours too." As we talked a while about hair color I found myself really checking her out. She had an attractive 40 something body, an adorable hair cut and absolutely no wrinkles on her face - not even laugh lines around the eyes, although she did look like someone who enjoys smiling. As I talked with her, I couldn't imagine any other hair color on her. It seemed to just fit her skin tone and eyes perfectly. She was absolutely beautiful.

Not all people like natural hair color, especially the gray hairs that show up before feeling ready for them, but looking at this woman today I realized that it is a look I like. Despite her many gray hairs she looked young and energetic. She was the perfect role model I needed today. Isn't life great that way?

Wednesday, April 21, 2010

Thank you to Helen at Pens and Needles for the Sugar Doll Award. What a fun way to concentrate on something other than RA! Plus, it is a nice way to learn something new about each other. I like that - community building. I have enjoyed reading new things about my RA blogger friends.

Part of accepting the award is to share ten things about myself and then nominate five other people. Here are 10 things about me.

1. CRAP is about the worst word that comes out of my mouth. I have just never been one to use profanity. It doesn't bother me that others use it, but is just isn't me. My kids refer to "crap" as the "K word" because when they were younger they thought it started with a "k".

2. I am seriously jealous of the birthday party Sophia recently attended. She and three other girls, along with the birthday girl's mom and dad of course, stayed at the Four Seasons in Chicago. They ordered room service, went on a carriage ride through Chicago, swimming and much more.

3. My grammar/spelling skills are weak but somehow I still managed to minor in English and currently teach English. I often feel that I am learning as I teach. My only problem is that if it isn't meaningful to me, I forget it and have to relearn it.

4. I love watching marathons of sitcoms with the kids. Right now my favorites are That 70's Show and Seinfield. Two of our favorites from the past are The Dick Van Dyke Show and Mary Tyler Moore.

5. My daughter Sophia recently asked me what was on my bucket list. I don't have a bucket list but as I listened to hers, I was motivated to make my own. It was a great way to really think about what I would like to do in my lifetime and came up with three things that could actually all be done together: learn Spanish fluently, travel through South American countries and do a really big hike in the mountains.

6. When I was a little girl, teenager and young adult my neck would break out in hives when I was nervous. It only occasionally happens now.

7. When I was a kid in school, I was always in the lowest reading groups. Two years in a row I was pulled out for extra services. It was great! We got to use the typewriter, knit, play games and spend time in small groups with the math/reading aid. It was one of my favorite times during elementary school.

8. I have flat, thin nails. I keep them short because they break really easy and tend to curve as they grow.

9. In my future I want to be a massage therapist or something similar. I would really like to work on elderly people that aren't touched often and people with chronic pain. I am not sure how this is going to work with my stiff and swollen fingers, but for now that is my goal.

10. I wish I could find a swimsuit that really fit and didn't ride up my butt.

Now, for the five people I would like to nominate for this award:

1. Rheumatoid Arthritis Guy - I know you all know him and love him but I just want to say he has been a great friend.

2. Hope Floats - Melissa is one blogger friend I have been fortunate enough to meet in person. She is a great gal. You will find many amusing things on her blog.

3. Joanne at Reasons to Be Cheerful cracks me up. I love reading about her life. She has had a lot of down times the last year but always keeps a great attitude.

4. Ra is Wild - Judy is taking on her RA through a raw diet. She provides lots of great looking recipes.

5. Dual Sport Life - Terry writes about his adventures with RA and motorcycle riding. Lots of good reading.

*RA Guy and Terry, I hope you don't mind being a Sugar Doll for a day. :)

Each of these people are part of our rheumatoid arthritis community. I am not sure who started this award but it has been a great way for us to learn about each other in a new way.

GMA's Biased Look at Unschooling

I know many of my cyberspace friends have learned a few things about unschooling here on my blog while reading about my experiences with rheumatoid arthritis. This week Good Morning America did a very biased piece on unschooling and in case you saw it, I just want you to know that it does not represent the magic of unschooling . My sister Stacey, who works in the public schools, saw it and was not happy. She sent in this comment to GMA:

My nephew and niece are unschooled and I have to say that they are much better educated and behaved than the students that I work with in the public school system. Many unschooling kids meet with other families of unschooled kids, therefore they get lots of socialization. Kids have a natural curiosity about things and they tend to remember the things they enjoy and like. Memorizing things for a test, which is often the case in public schools, is not effective. Unschooling promotes children thinking for themselves and pursuing their own interests. Unschooling does not mean hands off parenting. In fact, I would say that real unschooling parents are more involved with their children and spend hours of quality of time together, thus enjoying a much closer relationship with their children. My sister suffers from arthritis and I have been so impressed with how her children have stepped up without complaint to help her. This is directly contributed to the time they spend together "unschooling". I do believe they will both grow up to be productive adults and the main reason is because they are comfortable with who they are and like themselves. Their interactions in life have been mostly positive, therefore they are positive and happy people; the kind you want to be around. I think in the case of this story, the GMA reporters put their own slant and bias on unschooling and did not portray it as it really is. It is different, therefore a hard concept to wrap on minds around, however, just because it is different, it doesn't make it wrong.

Due to an overwhelming response to this piece, GMA went back and did another piece which was still biased in my opinion. I was glad to see this article by Lee Stranahan of the Huffington Post titled "Unschooling: How Good Morning America Got It All Wrong".

We have always been an unschooling family. For us, it has always felt right. Tonight Alexander and Steve were out buying supplies to make their own radio like they did in WWII. Both kids read in bed for pleasure until they fell asleep. As unschoolers we have had many friends leave us and experiment with school for short periods. For most, their teachers were not even aware that they had never had a formal education because they did so well. However, for most of our friends, they didn't stay in school long term because they found school limiting. We have also had many friends who were first public schoolers and came to us burned out. At 10 years old they no longer enjoyed reading or writing because so much had been forced on them. As someone who truly enjoys reading, this makes me sad.

I have one goal for my children and that is that they grow up happy with who they are. If they can accomplish that goal, than everything else will fall into place. We have chosen a different path because we want something different for our children. As parents we each make the choices that work best for our families. Our world is big and there is room for all of us - public schoolers, private schoolers, school at home, and unschoolers. Together we will make this a great place to live. We just have to learn to be open to new possibilities.

Off the Arava and More

~I am off Arava for a week or two to see if the increased joint pain, tightness in ribs, slight nausea in morning and swollen glands is from the drug or just a coincidence.

~I was walking into work with a gal yesterday morning. As we approached the steps she said, "Your knees are really bothering you today, aren't they?" She started asking questions as the tears started building and I told her it was too early and too painful to talk about right then. She said she understood but just wanted to say, "You look GREAT." I laughed and she said, "Maybe you can just stand there without moving looking great." That made me laugh again.

~In six years I have never talked about my RA at work but since I am teaching in the mornings now, there is no way around it. By the time classes were over yesterday my body had loosened up a bit. So, when another teacher walked out with me and mentioned that it looked like I was having a bad day I was able to talk without crying. She had a million questions and stopped once and said, "I hope you don't mind all the questions." I didn't. Actually, I liked that she had such good questions and she didn't tie any advice to the questions. She just truly wanted to know the information.

Monday, April 19, 2010

The Law of Giving and Receiving

The Law of Giving and Receiving: The universe operates through dynamic exchange – giving and receiving are different aspects of the flow of energy in the universe. And in our willingness to give that which we seek, we keep the abundance of the universe circulating in our lives. ~ Seven Spiritual Laws by Deepak Chopra

I believe that the things we think and the words we use become our truth. I consciously try to create feelings and beliefs that work towards healing and happiness rather than negativity because I want that to be my truth. After falling asleep around 4:30am and sleeping in until 8:00am, I woke up feeling like I had left a post on my blog that didn't feel right to me. I reflected on Deepak Chopra's daily inspirational guidance for today which says, "Today I will gratefully receive all the gifts that life has to offer me. I will receive the gifts of nature: sunlight and the sound of birds singing, or spring showers or the first snow of winter. I will also be open to receiving from others, whether it be in the form of a material gift, money, a compliment or a prayer." My previous post feels very self centered. Rather than accepting this gift of words my friend has chosen to give me, I have turned it into a negative that focuses on my pity party that has lasted the last few weeks and needs to move on so that I can get back to thinking positive things and accepting the positive that comes from others.

Not everyone can understand each of the challenges we face in our lives. I am reminded of this today as a friend is mourning what would have been her son's birthday. I can't truly understand exactly how she feels today or even have the right words to say to her, but I do know that throughout the day today I will be sending her extra healing thoughts because I know today is hard for her. I know in my heart that my friends do the same for me. Each of my friends is different which is what I love about them and because of their differences from each other and me, they are going to communicate to me in a way that works for them. I have been given a gift with my friend's words to look outside of how I am feeling and see that deep inside my friends still see the beauty in me that has nothing to do with rheumatoid arthritis. It is just about them loving me for who I am. What a wonderful gift.

Plus, after getting up and getting myself ready I looked in the mirror and realized that I do "look" good. I am eating healthy, I am walking when I can, my weight is down, my skin looks healthy, and I am happy with my life. No wonder my friend keeps telling me, "You look so good." It's true.

I saw this on someones Facebook post today: "Lots to do today--choosing Joy is at the top of my list." Wow. That is something to think about.

"You Look So Good"

My body has a window of time that it feels its best each day. Between about noon and five o'clock I am at whatever best I am going to be for the day. This is also the time frame when I see all of my friends, which is good. I would rather sit and talk during my good time than during my worst. Every week when I see a friend of mine she says, "You look so good." I 100% believe she is telling me the truth and want to believe that I look good even though I may be sitting and laughing while feeling like crap. What I don't think my friend really understands is that my window of time looking and feeling good together is very limited.

My mornings are always rough (the only exception to this was recently when I was on prednisone only. It was glorious to wake up and jump out of bed. Since starting the Arava, the prednisone is not working at all.) Yesterday morning my shoulders and hands hurt so bad that it took both hands to lift my tea cup. I went to get a haircut at 10:30 and the hairdresser had to wait while I maneuvered out of my chair when my cut was finished. That's a little embarrassing! I then came home and put on a little makeup since the boys and I were going out. I no longer use an eyeliner that requires sharpening because in the morning my fingers just can't do it. About fifty percent of the mornings I have my kids spray hairspray on because I either can't lift my shoulders high enough to reach my hair or most likely my fingers are too stiff to push the lever up and down. I have been so thankful lately for the warm weather so I can slip into a dress or skirt and not have to worry about dealing with pulling pants up or buttoning them. I know I could let some of this go - stop wearing makeup all together and get a cut that doesn't require any hairspray. Maybe even go to elastic pants. (Okay, seriously, help me if I get to that point!) But, these things are still a part of me and even though they are a workout, they are a part of who I like being and I am not ready to give them up. So, hopefully the pay off is that I "look" good.

As much as I just want to accept this complement, something about it always eats at me. When people say "you look so good" does that mean they think I am making up my symptoms? Because really, how do you look good but not feel good? I always feel prettier when I feel good so maybe I don't think of myself as "looking good" when I don't feel good. Maybe I am feeling sensitive lately about how people perceive this disease after sharing with two different friends on different occasions that I have been diagnosed with "severe rheumatoid arthritis." They both seemed surprised that I could be managing day to day without even a cane or crutches and still be considered "severe". I understand that this disease can be misleading and unless you sleep over at my house, you don't get the full effect of how rheumatoid arthritis affects my life because most people only see me during my "good" hours.

I am awake right now, in the middle of the night, because my shoulders hurt so bad I have to wake up and think about rolling over. Most mornings I take one step at a time down the stairs and often have to lean against the wall for added support. Many jobs around our house are completed by the kids. My mornings vary in what I can accomplish which is generally why on my days off work I am at the computer. It is one place I generally feel comfortable. Once my window of time arrives I am able to accomplish whatever my body allows for that day. Then around five o'clock when I sit down for dinner, the circle of events unravels itself again and I begin the struggle to get out of my chair and my shoulders, hips and knees start tightening up again. After this point, I feel physically useless.

Rheumatoid arthritis is tricky to understand unless you are living with it. The symptoms can come and go. Laughing and enjoying time with your friends can definitely help the symptoms move into the background and seeing my friends during the best time of the day is a bonus. Honestly I am glad I "look" good. I want to look good. I don't want to look like I have rheumatoid arthritis. So, why don't I just accept the complement and leave it at that? Why do I worry about people not understanding? Not everyone gets a weekly complement of looking good, right? Plus, my friends are very supportive which is another plus. I just need to accept the complement and not put any more thought into it.

This afternoon I am meeting Melissa from Hope Floats for lunch. We have met before and I am looking forward to seeing her again. She will see me during my "good" hours when I look and feel my best. However, since Melissa lives with RA also, she will understand without me even having to explain how the symptoms come and go. It is nice to have friends that have no relationship to RA but also nice to talk with someone that totally gets what you are experiencing. I am looking forward to my lunch with Melissa today. I think I am in need of some RA companionship. But, for now, I really need to get some "beauty sleep" as my dad always calls it or I really won't even "look" good.

Enjoy your day!

Friday, April 16, 2010

In Others Healing Thoughts

Today has been a crummy day for me physically. All the main joints in my body are stiff and sore and this morning I just wanted to sit and cry. But, as the day went on things got better. The sun came out, the kids woke up and cheered my spirits, I accomplished a few things on my "to do" list and I received healing thoughts from others.

This afternoon I received a comment from a reader that I didn't know existed. I was touched that we have so much in common - desire to alternatively educate our children, natural hair color, and alternative health. Yet, when I read "I admire your persistence in exploring all your options in regaining your health and send you healing thoughts every time I read your blog," the tears just ran. I needed them to run so it was a good thing. I was so touched to know that even though I sometimes want to crawl into my own world during the worst of days, that there are still people out there sending me healing thoughts - people I didn't even know read my blog. Thanks Jennifer. You completely made my day! Please keep those healing thoughts coming.

It didn't end there. Wren, from Rheumablog, who leaves the best messages on all of our RA blogs left a message saying, "I'm taking you along with me in my thoughts as I walk Finny today, hoping that you'll soon be able to get back out in the fresh air with your own four-legged buddy. Take care." I read her words and visualized myself in her thoughts as she was out enjoying her walk with her new dog. A feeling of warmth took over my body as I joined her on her walk mentally.

Lana over at Living it, Loving It said something that all of us with a chronic disease face and do so well with - "I like that even though you see the things that are making you feel down, you add a “but wait a minute” to it." It is true. We always have the "but wait a minutes" that bring us out of our slump and back to reality. We can't forget about those "but wait a minutes". They are the joys in life that keep us going.

Some days comments on my blog are just necessary. Today was one of those days. Thanks for not disappointing. My spirits have been lifted and there is a smile on my face.

Random Thoughts

This morning I have several things on my "to do" list but I just can't focus. Maybe it is the overcast morning I woke up to after several sunny days or just the fact that my body has gone back into its flare. Whatever is it, these are the thoughts on my mind today.

~Every day since taking Arava I have felt like crap and I am back in flare mode. I realize it takes time to get into your body and do its magic, but as of this morning I am wondering if I made the right decision.

~Lifting my cup of tea this morning is a struggle.

~For the first time in nine years I am not teaching an evening class. My family loves this.

~My morning class consists of 13 women and one guy. What a fun group of people.

~ I REALLY like my job. I can never imagine going back to the elementary classroom, but I enjoy teaching and being in the classroom with adults.

~My body needed a break from teaching two three hour classes a day, especially since one was in the morning and one was at night. However, I need to figure out a way to supplement the missing pay. I really want a work from home job that pays well. I know. Everyone wants that, right?

~Why is it that when you feel bloated your whole body image goes downhill?

~I am off dog walking duty again. This makes me sad.

~I can't wait for the kids to wake up this morning. They both always give me positive energy.

~I think a big cry is in order today.

~Those stinkin' squirrels have torn apart the cushion on my swing in the backyard. Steve and the kids surprised me one night a few years back and bought it when I was gone to work. That evening we sat in the dark with blankets wrapped around us swinging and talking. That memory makes me happy.

~I want to do something new with my hair but have no idea what. I saw a friend last weekend that colored her hair and it looks so pretty. I don't think I want to go that route again but maybe a new style would be good.

~Days like today I wish I was someone that bought a big bag of kibble rather than a person that makes homemade food for her dog, especially since there isn't any food made yet.I also wish today that I was a person that would drive to Dunkin Donuts and buy breakfast for everyone rather than having to make a healthy breakfast for my kiddos. I know Alexander will make breakfast if I ask him to, but it is really something I like doing for them.

~The last batch of broccoli fennel soup I made was so good! I am eating it now.

~Since I started taking Arava I have had a pain in my left rib at night and early morning. Coincidence?

~I reduce my predisone from 10mg to 7.5mg tomorrow. Wish me luck!

Thanks for listening this morning to my random thoughts. I feel a little better after sharing. However, if you have any random thoughts you would like to share, I would love to hear them.

Monday, April 12, 2010

The Magic of Prednisone Can't Last Forever

For the last month I have been on Prednisone. If I ignore all the side effects that can come from taking this pill, it is a wonder drug. It has taken me out of this awful flare I have been in for too long and allowed me to enjoy the things I love in life - walks, hugs from my family, chores, sleep, and much more.

But the magic never lasts forever. On Thursday I took the first of my Arava pills and by Friday morning my fingers that were almost making a fist were no longer making it more than halfway into a fist. By Saturday night I walked into Steve's gig with sore feet and a pain in my shoulder and by the end of the evening my hips hurt so bad I couldn't wait to get home. Things didn't improve throughout the night and by morning I just wanted out of bed so I could move and hopefully get the pain in my hips out with some movement. We were dog sitting over the weekend so together Sophia and I took the dogs on a very slow and painful walk. By the afternoon walk, I was feeling enough improvement that Alexander and I added about half a mile to our walk. But by evening I was back to a slow painful walk.

This morning I am feeling decent. My hands are not able to make a fist and my feet are still sore. The pain in my hips is still there but it is greatly reduced. I also have this strong pain in my ribs that has been there all weekend. I know the Arava will take about four weeks to prove its effectiveness but found it odd that the day after taking it I started feeling like crap and continued downhill each day. Hopefully today is a better day. As the sun is shining through the window by my desk, I feel optimistic that it will be.

Prednisone has helped bring me out of this long flare but my body is smart and strong. It isn't going to allow me to forget that something is still not right in my body. There is a strong relationship between my digestive system being out of whack and joint pain. So, this week I will work on that. In the meantime, I have been sending out lots of healing thoughts to all my RA friends. I hope you are feeling them.

Dogs Bring a Sense of Community

Walking is one of my favorite forms of exercise. On good RA days I feel like I could walk for hours. Prednisone and draining the fluid in my knee has helped get me out this last month and do lots of walking. For that I am very thankful.

Before Izzy I used to attempt to get out and walk but I always felt lonely. I liked the quiet of being alone, but for some reason felt too alone. Once she started walking with me, things felt right. I could have the quiet of being alone to think but also had the feeling of someone else there with me. Many good things have come from our walks. I get more exercise, more time in the sun, more time to connect and train with Izzy, and I have met so many wonderful people in our neighborhood that I never knew existed.

Last week Izzy and I decided to ignore the rain and go ahead with our longer walk. This walk takes us to the other side of our neighborhood. Before I started having problems with my knee, this was a daily walk for Izzy and I. It feels good to be out doing it again. While we were walking I spotted an elderly neighbor sitting on his front porch. Only something was missing - no Rocky. Rocky was one of the first dogs Izzy met when she was a puppy and I was trying to socialize her. Rocky could always be found in the front yard, without a leash, following his owner. A very calm dog. He was good for Izzy who is full of energy and senses calm from other dogs. I asked about Rocky, knowing as I asked what the answer would be. My neighbor shared that Rocky didn't make it through the winter. I immediately felt tears swelling in my eyes as I know how much Rocky meant to this man. He started talking and met us at the end of the driveway. He shared how Rocky came to them years ago rather than them looking for him - as if they were meant to be. He shared how difficult this loss was for them and how they were trying to look for a new dog but there are so many choices that it is difficult.

As Izzy and I continued on our walk I thought about this neighbor as I have every day since talking. I thought about all the other neighbors that I have met due to having a walking companion each morning. When I walked alone, I would pass people who said "hello" but that was it. With Izzy, I have conversations. I get to know the people who surround me. I like that. I like that Izzy has helped bring a sense of community to my world.

Thursday, April 8, 2010

Releasing My Intentions and Trusting in My New Path

Each morning I like to read Deepak Chopra's Seven Spiritual Laws and reflect. Today is the Law of Intention and Desire. One of my intentions has been to have good joint health. I found myself reading and rereading Chopra's second step for following this law this morning. "I will release this list of my desires and surrender it to the womb of creation, trusting that when things don't seem to go my way, there is a reason, and that the cosmic plan has designs for me much grander than even those I have conceived. "

This morning it dawned on me as I was reading this that I have released my intentions and what is coming back to me is the need to take medications. It isn't the way I wanted this to end but I have to trust that this is the route that is best for me right now. When I saw my PCP last month I surprised myself by asking for prednisone, but that small move lead me to x-rays, back to my original naturopath, and to a new rheumatologist. There is a cosmic plan for me that I don't quite understand but that I need to trust.

I picked up my Arava prescription tonight. I reread all the side effects and went into panic mode. I rang my sister and cried, making sure I am making the right decision. She calmed me and helped me focus on the positives.

Tonight before going to bed I will take the first of my Arava pills. Unlike when I took Methotrexate and imagined all the awful things it was doing inside my body, I will take this little white pill and imagine all the healing that it is doing for my joints. I will be thankful that it is there for me. I will thank my body for working so hard and for so long and for sticking with me as I have fought to do this my way. As I take the Arava I will remember that this is only one part of my healing process. Diet, herbs, positive thinking, and much more will always have its place. Together, the conventional and alternative will find a happy place for me. Most of all tonight, I am going to trust. I am going to trust that I have released my intentions and they are being heard.

Tuesday, April 6, 2010

Naturopathic Appointment and Decisions

Here I am once again, almost seven years later, reading about medications and trying to make decisions that are best for my family and me.

In 2004 when I was diagnosed, I went from waking up with stiff fingers to barely being able to walk in about six to eight months. Before going on any medications I read about diet, supplements and other alternative care but it was so overwhelming to me that I didn't know which direction to go. I do still remember the day that I agreed to take the medications. My daughter Sophia was only six years old and she wanted me to skip with her, something we did a lot. I couldn't. It hurt too much. I remember deciding at that moment that if meds meant I could still be the mom I wanted to be, than the side effects were worth it. That's when I began my journey on meds. Unfortunately, I kept going downhill on the drugs. That is until I started seeing a naturopath. Once she helped me clean out the inflammatory foods and build up missing links in my body, the meds started working and I went into remission with a few flares here and there until the end of 2007 when the painful feet returned. (Also when some inflammatory foods were returned) In early 2008 I went off all medications.

Last week Sophia, Alexander and I spent the afternoon drawing on the driveway. Several times that day Sophia mentioned to me that it was really fun to draw together. It was fun. We spend a lot of time together, but in the last few years, especially last six months, we haven't PLAYED together. I want to still play with my kids.

At my appointment with my naturopath on Saturday she asked me what I want to do that I can't do without the prednisone.

1. Play with my kids.
2. Walk our dog.
3. Bike Ride.
4. Put dishes away.
5. Much, much more.

We talked about my fears:
1. I will go from med to med and they won't work.
2. Side effects.

We talked about my options.
1. I can continue to treat this 100% alternatively. We are adding some herbs that help with joint destruction and inflammation and I can try that for several months and see how I do.
2. I can give the DMARD the rheumatologist wants me to take a try. My naturopath said our goal will be to keep the DMARD at a low dose and not add other meds if possible. She gave me encouragement that my body is very clean compared to 2004 when I started on methotrexate. She feels that with all the good changes I have made that the meds will be able to work with more ease in my body and therefore we won't have to add as much. With her help I was originally able to greatly reduce my meds.

Finally we talked about how this is not a FAILURE if I decide to take the DMARD. This is the most difficult for me and the reason I love my naturopath so much. She just sensed that I was feeling this way. Being med free has been my personal goal since being diagnosed. It has been my passion. I know I am not giving up on all the good things I have accomplished, but is hard. My mom gave me a scenario the other day that really made sense to me. She said, "Maybe you want to have a natural birth (I did) and it just doesn't work out (it didn't) and you end up having a c-section instead of that natural birth (I did). Did you still get what you wanted?" (I did and the births of both kids were still so beautiful). She reminded me that sometimes our plans change and as long as we still have accomplished our goal, we have succeeded. My naturopath and husband have also reminded me to not think of anything I am doing as a life sentence. Instead think of what it is doing for me right now to live the life I want to lead. Even though the rheumatologists say these drugs are a life long deal, I will make my own deals and decisions in the future based on what is happening with me.

I value the opinion of my naturopath highly. She will support me in whatever decision I make, but for now recommends I start on the DMARD with the intention that we are going to keep working alternatively to keep the dose low. Even with the prednisone I have a lot of inflammation that needs to be dealt with and my RA factor came back highly elevated. What I most like about my naturopath over any other alternative practitioner I have seen is that she genuinely cares about my family and me and looks at every side of the situation. She isn't afraid to suggest things outside her field, even medications, if she feels they are right for the time. She doesn’t make me believe miracles are going to happen, but still I always leave feeling such hope.

Thank you so much to everyone that responded with your words of support. They give me so much strength as I make my decision. I almost said "final decision", but you know what? It isn't. Decisions are never final. I am making a decision that fits with where I am in my life right now.

Sunday, April 4, 2010

Easter Day

Easter for my family involved a treasure hunt for the kids, a big breakfast, and our annual Easter walk through a forest preserve. We were able to enjoy the sun and wind before the storm came through late afternoon.

Saturday, April 3, 2010

Pure Joy

On Wednesday I had the appointment with the rheumatologist which has left me feeling out of sorts. On Thursday I finished work, ran a few errands and as I was checking out at Walgreen's, I saw a box of sidewalk chalk calling my name. I quickly grabbed it and added it to my other purchases.

As soon as I walked into the house with my goodies, Sophia said, "You got chalk! I wanted to get chalk." We ate lunch and headed outside to an 80 degree day. Let me just say that this chalk was the best $1 I have spent in some time. We have a long driveway and between Alexander, Sophia and myself, we filled up almost every inch.

Several times during the day Sophia said, "It was so fun drawing with the chalk." It was. It wasn't just being outside and enjoying the sunny weather together, but it was me sitting on the ground (thanks prednsione), me thinking about something other than RA, me just having fun with my kids. They saw the difference. It was pure joy to just live in the moment enjoying my two favorite people in the world. And my favorite puppy of course!

Friday, April 2, 2010

New Rheumatologist Appointment

Anxiety. Definitely not a trait that haunts me often, but when I visit the rheumatologist's office it takes over my entire being . I develop a huge feeling of fear and anger before I even hit the front doors. Why? Once I open the doors to the office building I feel doomed and out of place. With every appointment I have had in this office I sit next to elderly patients that struggle to get up and have never once seen anyone my age, there are posters of joint deformities in the patient's room that scare the pants off me, and I associate the office with all the side effects that come with the medications. I also associate it with lost hope.

When I arrived I was told I couldn't switch doctors without their consent. I explained that when my PCP referred me to the new rheumatologist I didn't even realize that she was in the same office. After fighting with them a while I told them I would just cancel and find another office. They went ahead and let me see the new rheumatolgist, but I could hear them talking in the back room quite surprised that someone would switch doctors without their consent. This doesn't seem that strange to me. Does it you?

The new rheumatologist is young, full of energy, and fast. And, she doesn't have a fear of my feet! The kids used to go with me to my appointments and we would always laugh afterwards because my feet used to hurt horribly and my old rheumatologist would rarely touch them and when he did, you could tell it really grossed him out. We quickly discussed my RA history, she reviewed my recent x-rays and blood work and added some additional blood work. Originally I was negative for RA factor, which I know many people are. She wants to retest and see where that stands now. Also, she drained the fluid from my knee which had ballooned the night before my appointment. There was a lot of fluid. Yuck! The results on the fluid came back with high inflammation. She confirmed that I have severe rheumatoid arthritis which I was already aware of. She would like for me to start on medications and will call next week with her exact recommendations after seeing the rest of the lab work.

I have been awake endless hours thinking about what I want to do. My first reaction was lots of tears and panic. Then I moved to sadness and finally I am to the point of looking at my options again. One part of me really just wants to take the medications, cross my fingers and hope they work. But, there are no guarantees of that. I have read too many stories of RA friends that have gone from medication to medication and still live most days like me. But, they could work too. There are wonderful stories of RA friends that are doing great! It just isn't settling right with me. I have worked too long to be drug free and still trust there is something alternatively out there for me. I am meeting with my original naturopath tomorrow morning to discuss my options. She will be brutally honest with me. If she feels I should do medications, she will tell me. I think she has one more idea up her sleeve though that I have been reading about and it looks promising. I will share more when I have talked with her.

This long, painful flare has reminded me that rheumatoid arthritis is a very serious disease that is a part of my life and will always be a part of my life. I have made so many good changes in my life due to trying to find an alternative route to curing this and I am not about to just give up on that. At some point I may have to integrate more than I am now and many of you may feel that I am living in "La La Land" for not doing so already. But, I have always been good at following my heart and my heart is telling me it isn't quite ready to give up yet. It still sees another way for me or maybe new things about myself I need to learn before throwing in the towel. I am confused, I will admit that. But after a few days of crying, talking, and researching I am finding myself again. I like that feeling. I now have all the current information regarding where my rheumatoid arthritis stands and I will just have to think carefully about how I personally want to treat it.