Friday, August 9, 2013

How I did it!


Many times I get asked what I did to get myself into remission. I thought I'd write a post sharing just that. I actually spent the good part of a year in bed. All that rest did play a good part in my remission. I understand that it's not realistic for most of you to do. My wish is that you take what works for you and integrate into your life and your routine. I was able to test my knowledge on a friend of mine recently. She has been flaring for months. She took what I've learned, used it, and is in much better shape than she was. I'm hoping I can help you too.

UPDATE: The friend I mentioned above is now in remission! I think I'm on to something here!

Educate Yourself
Know your disease and what makes it tick. With all the misinformation out on the Internet it's hard to get a good handle on what Rheumatoid Arthritis is and what to expect. A while back I made a post explaining just that. Click here for the post. Other trusted sources are the Arthritis Foundation and the Center for Disease Control.

Medication
With RA comes multiple medications covering many different medication classes. It is key to become familiar with each medication class and how they will play a part in fighting this disease. Learning about them will make you a better advocate in your care. RA medications and their side effects can sound scary. Remember the doctor is prescribing them because the benefits to you outweigh the risks.

Another point I want to touch on is that you need to take your medications exactly as directed by your physicians. Taking a medication 3x a day does not mean breakfast, lunch, and dinner rather every 8 hours. Never discontinue a medication without your doctors consent. Doing so may be deadly. 

Your Wellness Team
Become familiar with the roles of every one involved in your care. You will have many different professionals advising you in your road to remission. Knowing what you should expect from each one will enable you to see the big picture and feel more in control.  Your wellness team doesn't stop there. Your spouse, family, and friends can also be of some support. You must feel comfortable communicating with everyone. If you feel uneasy then change things. You teach people how to treat you.

Another point I want to touch on regarding your personal relationships. Make sure you give the good with the bad. I have a very dear friend that always took me to my infusions at the hospital. We got into a routine, every few weeks, we stopped at Dunkin Donuts before, we had a certain section in the room we would sit.  We spent the afternoon catching up. After she would bring me home and stay for dinner with my family. She made infusion day really nice. She's an angel here on earth. She really comforted me which is why what I'm about to tell you never occurred to me. Seeing me in the state, driving me to the hospital, and taking care of me...she saw sick me. She never spent time with “well” me. I would have a spurt of energy and I would go out and have a good time. It never occurred to me to call this good friend because I saw her quite a bit already with my infusions. She ended up being really hurt and had every right to be. She told me she missed the old me. And out of everyone, besides my husband and daughter, she deserved to see and enjoy the times when I felt like my old self. So please remember to keep that balance. 

Diet
There are many diets, supplement drinks, and programs out there claiming to cleanse your body, cut down on inflammation, and some to even cure arthritis. I am here to tell you tread lightly because most are a scam. Don't waste your money. You can figure out a diet yourself using your doctor. Eating healthy and portion control will always benefit you RA or not. For every 1 pound that you are overweight that’s 4 pounds of pressure on your joints. The hardest thing to do when you are stiff and in pain is to exercise but honestly that makes a world of difference. If you can get moving just a little it will help in the long run. It can be as simple as walking up and down the hall. Any movement.

There are many arguments that avoiding certain foods will lessen the inflammation in your body. This is true. However, it's not the same foods for everyone which is contrary to popular belief. Tomatoes may cause you inflammation but for me I can eat them and I am fine. There is a blood test called the LEAP MRT- lifestyle, eating, and performance mediator release test. Your doctor can call Lab Interpretations, LLC at 1 (775) 851-3337 for the test specimens.

Document
Buy a day planner, an app for your smart phone or tablet, something you can keep with you all the time. I have included a picture of mine. Every Sunday I write down in the to do section what I need to get done by the end of that week. Phone calls to doctors and insurance companies, picking up a gift, mailing something out, working on my blog. Any little thing that needs to get done. On Monday if I have the energy I'll do something on my list. If I don't have energy I'll do it Tuesday and so on. You do what you are up to each day. Having it all in front of you will make it easier and less overwhelming to get things done. 

Journal how you feel. Keeping track will help you to spot patterns. Are there days where you feel 20% bad and 60% good but you go out and do things as if you feel 95% good? Think about how you can change things. I had a friend that would go to the doctors twice a week. After the doctors she would be hungry.  She figured since she was already out of the house she would go sit down at a restaurant and eat. Going home and cooking would take to much energy and everyone has to eat right? One day I asked her to try something. Get take out. Go home. Get snuggled on your couch in your jammies and slippers. Then eat your lunch. After doing this a few times she saw a huge difference in her energy level. Just from that minor change.  

If you look at everyday I have a few hour span where I can rest. That is key. I know a lot of you are reading this and thinking of why you don't have time to rest. I am telling you, right her right now; Stop the excuses. You are reading this post because you want to be in remission or stay there. I can not stress enough that you need to rest each end every day. If you are serious about changing your life to get to remission you will make time. Which brings me to the next topic.



Listen To Your Body
Know your body. Listen when it's tired. Think about what you just did and how you can alter next time to save some of your energy. Every bit counts. Use assistive devices anytime you can. Who cares what  you look like. Try and tell me that saving energy with assistive devices, energy you can use later in the day, is more important than time with your loved ones. 

The medications that you take weekly, take them on the same day. Then you will hopefully only have one hangover day. Always plan your hangover day on a free day, or a day that you have the least going on.

If you have a good day don't start acting like your RA is cured. You and I both know there is no cure. You are having 1 good day. Why not go at a medium pace instead of full throttle. You will thank me for this the next day. And maybe, just maybe, you might feel good for 2 days.

Don't Assume Everything is Because of RA
I was exhausted. I was sleeping 18 hours a day. Never felt rested. Well of course! I have RA don’t I? I am on medications that exacerbate any sort of sleepiness. My rheumatologist couldn't figure out why nothing was working. Why I was in so much pain and my blood work was coming back normal. At some point she suggested a sleep study. I figured I'd get around to it someday. I just wanted her to fix my RA before I even dealt with something else that might be wrong with me. 

This time last year I went on vacation. The friend I was visiting asked me if I knew that I gasped for air  during the night. Apparently she had heard a choking sound a few times. She actually tried to wake me and couldn’t. I just kept snoring away. When I got home I went to my GP and she sent me to a sleep doctor. Well the sleep doctor could not believe I was functioning after I told her my symptoms. I kept saying “yeah but this is all just because of my RA”. She kept saying something else was wrong.  

The next thing I knew I was packing my overnight bag to stay at the hospital the next night for a sleep study. OK, I thought, I'll humor her. If nothing more than to tell her she was wrong. So Saturday night I went to get my sleep study done. The results were so bad they expedited getting them to my doctor. Instead of the 2 week waiting period I was in her office Monday morning. I indeed had severe sleep apnea. I stopped breathing 40 times an hour up to a minute each time! I was only breathing 20 minutes of every hour! That night I start using my CPAP machine she prescribed. The next morning I woke up rested. As the weeks passed I noticed my blood pressure was lower, no more night sweats, pain and swelling went down, and I had so much energy. I went to see my Rheumatologist. Then she says that word to me. That word everyone longs to hear. REMISSION! REMISSION! REMISSION! All this time I had been in remission. It was the sleep apnea. WOW. Just WOW. 

Now there is remission with meds and remission without meds. I am still in remission with meds. With all the craziness going on with my knee I need to stay on the meds a bit longer. Later I will wean off them and that will be one happy day.

I guess the main point I want to get across is its all about priorities. YOU need to make it a priority to change things. What you are doing now isn't working so who could it hurt? I wish you well and I hope you can take something away from this.




5 comments:

  1. thanks for this. It was very informative.

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  2. Hi, , its a critical disease as we also supply a wide range of natural medicines at big level. Thanks for sharing.

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  3. Congratulations on your remission and your articles! I agree with everything you have said including that there are a lot of people who are always looking for ways to scam their way into someone's pocket. The best advise is old advise, "return to nature". Use what God has already given us for food and medicine.
    "...The trees will provide food, and their leaves will be used for healing." Ezekiel 47:12

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  4. I am going to keep a journal and I do try to nap every day when my daughter does. I love your idea about a weekly to do list. I usually do a daily one and get frustrated when it isn't accomplished. However, I have learned that i need that rest every day! Right now I am on bed rest per Dr. When I get off of bed rest I will not go full throttle. Loved this by the way. Thats me and i try to do everything in one day. I can't do that anymore. Am I able to print this off and post it in my house. I need that constant reminder and if I see it on a daily bases it will trigger my brain to stop and retrain myself. My hubby will see it. Is this ok????

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    1. Absolutely you can print it off. Hope it helps.

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