Good Riddance 2010!

Tonight is a definite blog night. I have too many emotions, thoughts and memories going through my head right now and I need to get them out. Whew, have you ever had a year that you just can't wait to end? All I can say for 2010 is "I SURVIVED!!!" I hope one day to look back on this year and understand what it was all about. I've been thinking a lot about this past year and frankly I've been really grouchy this week. I don't know if it is all the memories or just me coming off of my Christmas high. Christmas was wonderful!!! Perhaps it could be my hubby down from knee surgery, the kids home all day fighting and messing up the house, my sleepless teething baby or the fact that I just gave away all of my baby stuff that I thought I was ready to part with...yes I cried. I know with every fiber in my body that I am done having children but it was still a hard step. I am entering a new stage of life and I just hope I can pull it all together and enjoy it! Today is my 12th Wedding Anniversary. Even with the sore knee, my husband took me out to dinner tonight and delivered my traditional roses. I am a lucky girl. At dinner he had to remind me that in 12 more years we could possibly be grandparents! Oh, and then we came home and watched the Bucket List...how fitting!?!? We are such romantics.
Anyhow, I have been looking forward to this New Year, 2011, for quite some time and here it is. What now??? I think I have a fear that maybe things won't turn for the best. What if last years pains and frustrations are just the beginning of the rest of my life? I feel like RA has made me so pessimistic. I catch myself not allowing any anticipation of events. Most likely it is to protect me from disappointment. I really have to work on that. I have a lot to work on but am hesitant to write any resolutions. Last year some of my resolutions got thrown out the window because physically I was not capable of completing them. Feelings of failure always follow an incomplete resolution. I don't want that this year. I want to be guilt free.
With all of these thoughts running through my head I turned to my blog roll tonight. I am so thankful for all of your posts. They helped me make sense of some of this hesitancy and frustration I am feeling as I wrap up this year. Thank you! I wish all of you a very happy and healthy New Year. I'll post again when I am not so grouchy and maybe get some sleep.

Thankful For RA?

I read a post by 'Single Gal' yesterday which has caused more contemplation than she probably ever intended. It is a great post! Find It Here. Am I thankful for my RA? It's been on my mind constantly. I've tried thinking of every possible angle to this question and no matter how I looked at it "NO WAY!" I am not thankful for this disease and the pain and frustration it has caused me in my life. However, because it is Thanksgiving and I want to feel the spirit of gratitude, I have altered the question a little: "Because I have rheumatoid arthritis I have become thankful for..." My mind began racing with little details that I never would have listed on my thankful list if it were not for RA.
1. My slippers. My feet thank them every time I approach the line where my carpet turns to slate tile. I love you slippers!
2. Becky the phlebotomist. After 7 years of this I still hate needles. Question: Do you ever get used to them? I've had my fair share of bad blood draws and so Becky made my thankful list. She works at my rheumatologists office and has never missed on her first try. It is quick and painless. I love Becky!
3. Medication! I have been humbled into loving my meds. Celebrex and MTX have helped me so much. I am very blessed to live in this day and age. Thank you drugs!
4. A normal bowel movement...too much info??? Sorry but when I have a flare up my digestive system takes a hit. Diarrhea is the story of my life. When I have a normal BM I am SO thankful!
5. Weight gain. Between the pain, appetite loss and diarrhea, I tend to lose weight. I get really excited when I see some increased poundage. This was truly something I would have never been thankful for before RA.
6. Digital scrapbooking. This wonderful age of technology has allowed me to keep up a hobby that I love with the ease of point and click.
7. Real food. Since my diagnosis I have made huge changes in my diet and lifestyle. I have learned to appreciate whole, real foods and natural herbs and spices...YUMMY.
8. A good day! I took a lot of my good days for granted before RA came along. I wish I could have recognized how good I had it. However, now I don't miss a detail when a beautiful day finds me. I'm thankful for that.

A Little Liver Lovin'

The liver...not pretty to look at but quite an amazing organ! The Hepatitis Foundation says it much better than I can...

Sadly, people generally have little knowledge of the complexities and importance of the thousands of vital functions their livers perform nonstop.

The liver is about the size of a football – the largest organ in your body. It plays a vital role in regulating life processes. Before you were born, it served as the main organ of blood formation. Now, its primary functions are to refine and detoxify everything you eat, breathe, and absorb through your skin. It is your body's internal chemical power plant, converting nutrients in the food you eat into muscles, energy, hormones, clotting factors and immune factors.

It stores certain vitamins, minerals (including iron) and sugars, regulates fat stores, and controls the production and excretion of cholesterol. The bile, produced by liver cells, helps you to digest your food and absorb important nutrients. It neutralizes and destroys poisonous substances and metabolizes alcohol. It helps you resist infection and removes bacteria from the blood stream, helping you to stay healthy. Arguably, your liver isn't just your silent partner – it's your best friend.

I am on Methotrexate and I read every scary side effect possible. You know you are in pretty bad shape when the risky side effects sound better than the physical reality you are living in. Even with my strong 'natural and organic' history, I honestly hit a point where I would do or take ANYTHING to feel decent again. Unfortunately, my liver takes a hit with this medication choice. Possible liver side effects with MTX include hepatotoxicity, acute hepatitis, chronic fibrosis and cirrhosis, decrease in serum albumin and liver enzyme elevations.

WHAT CAN WE DO?
- We must be diligent with our blood tests! Right now I am getting all of my panels drawn every 6-8 weeks with special attention going to the CBC (complete blood count), creatinine (for kidney function), and liver function panel. Catching problems early means less damage later.
- Avoid excessive alcohol. Overworking an already overworked liver with the use of alcohol can cause liver cells to become permanently damaged, cirrhosis.
- Avoid environmental pollutants such as fumes from paint thinner, bug sprays or aerosol sprays. Use a mask and cover your skin when working in a risky environment.
- Avoid obesity. Watch your calories, especially from proteins and carbohydrates. Excess calories in these forms can cause liver dysfunction and fat deposits in the liver.
- Watch vitamins A and D. Excessive amounts of some vitamins can be an additional source of stress to the liver.

Good news is that the liver has an incredible ability to regenerate. By choosing a healthy lifestyle and proper diet we can help our liver cells that are being damaged by our meds to regenerate, forming new liver cells.

Mortality Rates and Rheumatoid Arthritis

Will I die from my rheumatoid arthritis? Well, it isn't a fun topic to discuss but one I am ready to face. In the articles that I found, most cited a lifespan reduction of anywhere from 5-15 years. With life expectancy in the USA currently at 78.24 years, that puts us at about 73.24-63.24 years. However, positive responses to treatment may indicate a better prognosis along with other factors such as overall health and the absence of other comorbid conditions. It is interesting to note that the risk of cardiovascular death in patients with RA continues to be 60% higher than in the general population. The most frustrating part of the studies for me was there have been no significant improvements in these statistics for quite some time. Even with all of the advances in new treatments and medications, these numbers are staying the same. We must keep searching for a cure!

So there it is in a nutshell and I am surprisingly OK with it. 60 or 70 years is a great life! Let's face it, not one of us really knows how long we have to live anyway. Each day is a gift. I used to have an extreme fear of dying early and leaving my young children and husband behind. However, after experiencing my latest flare up this past year I began to see death as the reward at the end of the fight...no more pain! My thoughts all came together for me one day during a series of doctors appointments. I began my day with my DEXA bone scan appointment, followed by my regular rheumatology appointment, followed by my eye appointment because I am on the medication Hydroxychloroquine. I spent over four hours watching elderly people hobble in and out on canes and wheelchairs, with disfigured joints and hooked up to oxygen tanks. Was this all I had to look forward too? Light bulb moment...I am in my prime and things will never get better or easier than they are today. I better be making the most of what I have right now!

I presently have a deeper fear...RA ruining my quality of life while I am still alive. As a young wife and mother with four little kids to raise, I still have lots of things I want to accomplish in this life. Death is inevitable but living is something I still somewhat have control over. Yes, there will be surprises along the way, like being diagnosed with RA for example. However, I can still choose the attitude to take with me throughout this journey. Also, there are many physical things we can do to help our medications and different therapies achieve their maximum effectiveness in our bodies. For my next posts I want to look into topics such as cardiovascular disease, liver failure, managing stress, exercise, diet, massage therapy, yoga/meditation, etc. I have noticed that my lowest points have come when I have simply been waiting around hoping that my medications would kick in. If I stay busy trying new ideas with diet, exercise, cleansing, meditation, etc, I do much better physically and mentally. It puts me back in the captains seat where I feel like I still have control.

Coming Out Of The Darkness...Depression and Rheumatoid Arthritis

I have not posted for a very long time. This morning I woke up at 5:00 am and couldn't stop thinking about my neglected blog. I am FINALLY feeling better! It has been a LONG summer waiting for my medications to kick in. I began my medications in June but I didn't notice any positive effects until September. I think the switch to the injectable form of Methotrexate helped me the most. However, I also started exercising once again in September too. Who knows??? All I can remember is the day when I felt good enough to go out and work in the yard. I was trimming back some of my neglected plants and started crying because I felt like me again! It has amazed me, as the fog has slowly been lifting, at how dark this past year has been. I let myself get pretty depressed and I still juggle back and forth between the theories of: Was I depressed becuase of my RA or did my RA flare up again because I was depressed with baby blues?

I recently read an interesting article in Arthritis Today:
"Patients with rheumatoid arthritis are twice as likely to experience depression but are unlikely to talk to a doctor about it, according to researchers at the University of North Carolina at Chapel Hill. In the study, published in Arthritis Care & Research, researchers found that almost 11 percent of RA patients had moderately severe to severe symptoms of depression, demonstrating a worrisome link between rheumatoid arthritis and depression.

The study also found that only one in five of the patients with arthritis and depression discussed it with their rheumatologists. Those who did were always the ones to bring up the topic – not the physician. When it was brought up, it was often not discussed at any length."

My baby just turned one! Part of me wishes I had gotten some help with antidepressants or something and so I could have enjoyed my baby a little more. I really missed out on a lot with her this year. I admit, I never have discussed depression with my rheumatologist. I cried my eyes out through my first appointment but the possibility of depression never was mentioned. I don't know how much difference it would have made this past year to add antidepressants into my regimen of meds, but I will always wonder if I suffered more than I needed too.

I also wish that I would have found more people to talk to. There was one particularly hard day where I was done being patient, done searching for natural cures, done hurting, etc. A friend was inspired to call and check on me that day. She told me that I needed to call her old neighbor who had raised six active boys despite being diagnosed with RA at a young age. I hung up and called her immediately. Dixie is older now with grandkids but took the time to talk to me. She described her symptoms and initial diagnosis, her flare ups and periods of remissions, her meds past and present. She shared some helpful advice and gave me the courage to keep going. I knew she knew exactly what I was feeling on that day and she had seen similar ones in her own life. However, she had gotten through them. She promised me that things would get easier and I could live a good life with RA and also be a successful mother. She'll never know how much this phone call meant to me. I hope one day to pay it forward and be there for that someone who is experiencing their particularly hard day.

Invictus...RA and all!!!

With this latest flare up since my baby has been born, I have felt like I have no control and I am simply at the mercy of this disease. I was watching a movie that helped me change my perspective and get some fight back in me. Nelson Mandela, played by Morgan Freeman, refers to the following poem. I immediately looked it up following the movie. It is by William Ernest Henley who at age 12 fell victim to tuberculosis of the bone. His foot was amputated at age 25 and he wrote this from his hospital bed.

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

The last two lines have become my daily motto: "I am the master of my fate: I am the captain of my soul." In my next posts I plan to address my deepest fears of this disease: mortality rates, passing RA on to my children, liver failure, cardiovascular disease, disability, etc. I want to get the facts straight and figure out what I CAN do about them instead of letting fear run my life. I have RA and I will have RA for the rest of my life. I am only 31 years old! I have a lot of life left to live and I will not let RA win. "Invictus" is latin for "unconquered" and that is exactly what I plan on being!

Rheumatoid Arthritis: Involving Your Children

When I was first diagnosed with RA I very clearly remember talking to a friend whose mom had a type of debilitating arthritis and thus had to rely on a cane to get around. She told me how embarrassed she was to have her mom come to school functions or friends come over to her house. That conversation has stayed with me for years and has affected me in negative ways. I believe the time has come to address this conversation from my past. My RA doesn't have to be an embarrassment to my children. I am beginning to see this time around that just the opposite may be occurring...
I had two young children when my diagnosis came in 2003 and I had every intention of hiding my RA from them. The words "rheumatoid, arthritis, disease, sickness" were never mentioned in front of them and I was going to keep it that way. I put a smile on my face and cried at night when they went to sleep. I took my meds in my bathroom where they wouldn't see them. I was determined to do what I saw all of the other mothers doing with their children. However, I do remember on my bad days getting more hugs from my kids and even my 4-year-old mentioning me in her prayers at night...they knew despite all my efforts to hide it! Children sense when those they love and depend on are hurting and it is OK for them to be a part of your bad days. If not addressed it leaves them to worry about the unknown.
This time around I again have two little ones running around but also two older ones now ages 9 and 7. There is no way of avoiding their questions and concerns as they see their mother struggling up stairs or crying over the juice bottle she can't open in the morning. Just yesterday my 7-year-old noticed me taking a longer route in from our backyard to avoid our stairs and asked "Mom, what is that thing you have?" Yes, I didn't even hesitate in saying the words "rheumatoid arthritis." She accepted my answer and moved on with no further concerns. A few days later she asked, "Mom you know that thing you have, are you going to die from it?" I was so glad that our communication had been open enough that she dared ask me that question instead of letting it worry her privately. My 9-year-old prides herself in being able to open jars and bottles for me and helps so much with the younger siblings. Instead of letting anger and frustration take over in those moments as I watch her doing the things I once took for granted, I have been humbled into just being thankful for the help. I have the most amazing children. People often ask what I have done to raise such helpful, caring, and perceptive children. I have also pondered on this question myself and I have to believe that my RA has become a part of them too. They have learned to recognize when others are in need and have found ways to help and serve others as a result. This whole time I have been worried about RA ruining my children's childhood and about them being embarrassed of their mother when really they are becoming strong, loving, responsible human beings as a result of my RA. Let your children be a part of your battle. They have the right to know and the right to grow right along side of you.

Inspirational Example

This video has many similarities to our "new lives" with RA. It gives me courage and hope on those not so easy days. It also encouraged me to start this blog. There is healing in sharing our trials.

http://www.youtube.com/mormonmessages#p/u/4/KHDvxPjsm8E