As Good As It Gets-Now What?

By Jamie Tuesday, April 07, 2009

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So, at month 7 and still in the tight grips of my first flare I have been pondering my life. I now realize I have been putting it on hold for the elusive "tomorrow I'll feel much better". I have been through the disbelief stage (maybe the dx is wrong?) and am coming out of the grieving stage. I am left with the question, what if this is the best the RA is going to get? If that's the case, I now need to figure out how to go on with life as best I can. So, I have started back with an exercise routine, walking, elliptical and light weight lifting. It feels good to move. Sometimes the RA bites back and puts me down the next day but I am going to keep on going. I hurt when I don't exercise and hurt when I do so I may as well bite the bullet and go anyway as it can only benefit me. I have been shy about making any commitments to do anything as I don't know how I will be feeling that day but I am now going to start filling my calendar and if it's a bad day I will take extra pain meds and maybe I have to be the first to head home but that's ok.

I am learning to live with the unpredictability of RA and not fear it. It is what it is and in accepting that I am finding greater peace and letting go of anxiety and depression. I have been rereading Eckhart Tolle's "A New Earth-Awakening to Your Life's Purpose". Chapter Five introduces the most interesting concept called "The Pain-Body". It is a fascinating chapter and RAngels can really relate to it. While reading about the Pain Body I at first became a bit depressed as I realized that I have a very heavy or dense Pain Body. But then Eckhart gave me incredible hope as he states that those with the most dense pain bodies have the greatest possibility of enlightenment and awakening. Many of the wisest, most enlightened men and women on our planet once had a heavy pain-body. I am now beginning to feel hopeful and alive again despite not having any physical improvement from my drug regimen.

I am wondering if anyone else has read Tolle's books or are interested and would like to share their experiences or interpretations and how we can use his concepts to make peace with our bodies instead of war. Instead of thinking of it as a fight, what if we make peace with it? When you make peace with it it no longer defines you or has power over you.

Cheers to all. Looking forward to exploring this journey and hearing your thoughts.

Jamie

www.eckharttolle.com

Comments (6) | Add comment

Tracy M

4/ 9/09 11:20am

Hi Jamie!

Great post! Again I share your sentiments... I have both of his books, but havent yet gotten around to reading them. You have inspired me to get going and read! Have you read Louise Hayes book " You can Heal Your Life" ? She talks alot about your mind set and the power you have over your thoughts, living life in the present, and the effect of our thoughts on illnesses. Very simple to read, with lots of daily affirmations to help one. We cannot change what has happened in the past, but we do have the power to control how we react to the present, and this in turn will affect our future.

Talk soon

Tracy M

Rita

4/ 9/09 1:03pm

Reminds me of what Paul says in the bible about how our suffering draws us to rely on God:

2Corinthians 12:9

⁸Three times I pleaded with the Lord to take the pain away from me. ⁹But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. ¹⁰That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

I'm on month 7 too and my suffering has helped me to turn to God to carry me throught the hard time of battling RA. Shame on me to think that I can carry the burden all on my own or that I attracted this to myself. God's love and mercy endures forever and his love comforts me and gives me the strength that I get not thru me but only thru him. I agree that being in pain helps me to turn to God and to read his words for encouragement and builds my faith this draws me closer to Him. If I did not have the RA to deal with then I would probably not crave and long for that that spiritual hunger of knowing God. It has made me more spiritual. I read the scriptures to affirm that I am blessed, accepted, adopted and reedemed in Him and that God has only good plans for me. May God bless you and may he give you encouragement and strength to know that you are not walking alone.

Isaiah 40:31

³¹ But those who hope in the LORD
       will renew their strength.
       They will soar on wings like eagles;
       they will run and not grow weary,
       they will walk and not be faint.

Lene Andersen, Health Guide

4/13/09 7:49pm

It's quite possible that this isn't as good as it gets- you meds may kick in more or you may end up switching to another medication that will work better. However, you're on to a good thing when you've decided not to put on your life on hold anymore - this is an unpredictable disease, but you can't stop your life, because then you'd end up existing instead of living. Sometimes, it needs more pain meds and sometimes you need to cancel, but you have to keep going out there.

I haven't heard of the book you mentioned, but have ordered it from my library and look forward to checking it out. Personally, I've found a lot of help in mindfulness and Buddhist teachings and you may find it interesting, as well. I'll let you know what I think of the book.

sheina

5/27/09 11:38am

Hi Jamie,

I was researching natural remedies and I ran across your post. And as I read along, I could relate to everything you have been going though. I could go on and on with my struggles with this disease, by I rather share with you what has been working for me. I don't know what meds you are on but you might want to ask your doctor about Enbrel. Jamie, I have tried over 10 different meds and this is the only one that works for me. It wasn't easy to get my insurance to approve it, but it was well worth it. I've been battling this disorder for 11 years and preventing cartilage damage is the key. You need to do everything you can to stay off of prednisone. I know there are times when you will need it for flares but trust me avoid it as much as possible. In addition, you might notice that certain foods can trigger flares. I've noticed that seafood, tomatoes, potatoes, eggplant tend to cause flares as well as foods high in sugar or salt eaten late at night. There are so many things that I have learned in this battle and the main thing is you have got to fight. Don't just lay down and let this disorder boss you around and make you into the oger that I was. RA temporarily had me in a wheelchair but now I am back into my high heels. Life is ment to be enjoyed to the fullest. Modern meds have come along way however I realized that negative emotions can cause flare also. If anyone has offended you, be quick to forgive. If you have an explosive temper, learn to manage that emotion. There were times when I would fly off the handle and the next morning I could not get out of bed. I dont' know your whole story and I not here to judge. I just want to share things that I have learned that help me over come the depression that accompany's this disorder. I could go on and on but I just want you to know there is hope. It does get better. I hope that anything that I've shared will benefit you. Take care of yourself. Whatever that entails.

-Sheina-

Jamie

5/31/09 6:36pm

Hi Sheina,

Thank you for the most thoughtful response. I truly appreciate it. I also have great news, since I stopped "fighting my RA and my body" and surrendered I went into remission shortly after that posting! I have been in remission for 7 weeks and having a fabulous time. I did have an active week of RA last week but think it is due to the stress of a court case and will not be a true flare. My intention with that posting was just to say that I am surrendering and listening to my body and am going to stop putting my life on hold waiting to feel better. It was amazing that when I did, I started feeling better.

I am starting to correlate some triggers like you've mentioned that are very helpful. Stress, salty foods, overdoing it. I was literally in so much emotional pain last week that I could hardly walk-it was very enlightening to watch my body say "no". I've also started yoga, meditation and counseling to help with the negative emotions.

I am open to all treatment options but luckily I am having success with the Sulfasalazine and Plaquenil right now. How many years into it did you start on the Enbrel? I am trying to figure out how long from onset do most people start needing the Enbrel. I had a bone scan recently but haven't received the results yet.

I would love to learn from your wisdom and experience. Let's keep in touch.

Cheers,

Jamie

sheina

5/31/09 9:34pm

Dear Jamie,

I am so glad to hear that it is in remission! That is such a blessing. I truly pray that it will not return. God is so good! Keep up the physical/emotion theraphy. We all could use it. You asked about the time frame in which I started the Enbrel. Well first of all, I was in complete denial went I first found out. I was very active working a job and enjoying life. At the age of 25, the occupational nurse at my job sent me to a specialist and it was there that I heard about RA for the first time. I then I went home and thought that this would all just go away. My first doctor prescribed several meds that had little or no effect in relieving my pain. The only thing that worked for me was prednisone. So, I took that for about 7 years all the while trying every new med on the market. Those meds either didn't help or I had a bad reaction to them. Enbrel was my last resort. By this time the prednisone had damaged several joints. I am so glad to hear that you had found something else that works to manage your pain. I am sure that your doctor has warned you about possible eye problems associated with using plaquinel. Just be sure to see an eye doctor regularly. Jamie, it sounds like your case is way less severe than what I went though. I am praying and believing God that it will never again return. He is God and he can and will do it. We have to trust and believe him and do our part by walking in the love of God and taking care of this body by what we put into it. His word states that "He fills my mouth with good things, therefore my youth is renewed like the eagels". I am so glad that you are taking care of yourself. You are getting a jump on this disorder. Like I said I was in denial at first and didn't start to really be proactive until 4 to 5 years after the diagnosis. It sounds like you are on the right track. I am so happy for you. Be sure to enjoy everyday of your life, because we both know it is truly a gift. You really made my day with this wonderful news.

-Sheina-

As Good As It Gets-Now What?

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