Comments on: My Decision To Not Use Medicines Right Now Is All About Personal Responsibility

By: Khadija

Khadija — Wed, 18 Dec 2013 17:00:39 +0000

RA Guy, I LOVED reading this post. I’m so sorry that you are receiving those type of messages, but I totally applaud your ability to speak your truth in spite of it all. We all have to realize that life is about learning from the various experiences along the journey and coming to the right choices and situations for each of us. It may vary by person, but that doesn’t make one individual’s decisions and outcome more valid than the next person.

The great thing about personal freedoms is that we are FREE to exercise them! It’s funny, because I just wrote a blog post about pushing past the fear of backlash and negative comments when it comes to sharing alternative and holistic ways to manage chronic disease (I’m a 10 year Lupus thriver). Worrying about the types of comments you’ve received- despite my sincerity has cause me to procrastinate up until recently. But I’ve come to the conclusion that I have to speak my truth and share what I know because if it helps just one person, it will all be worth it. You can check out the post here if you like:

http://thrivewithlupus.com/2013/12/14/fearlessly-fighting-lupus-or-on-speaking-my-truth/#sthash.h6EZ6f9Z.dpbs

Keep up the good fight!

By: Mnoone

Mnoone — Thu, 12 Dec 2013 16:50:33 +0000

I just found your website last week and have read a lot about your struggles and your wonderful humor. I have AS which has similarities with RA. My first doctor concluded I have RA and never introspected my condition futher. I followed her direction diligently but later on, I questioned it. It’s good to question what I was doing to my body especially with so many meds. I later pointed out my one common problem she overlooked. It was where the pain was consistent and recurring…my spine. I never thought a doctor would be so wide opened in disbelief and gave me ‘how could I have missed that’ look. Inspite my suggestion to look at my situation in a different way, she ignored it. “AS and RA are treated the same way, if it is AS,” as her claim. I am so lucky to have another doctor who is so willing to see my condition futher in a different perspective. From there, my xray and test results showed positive AS. My new doctor and I met halfway on what I would like to take but of course, she hesitated in the beginning. I was taking NSAID (relafen) prescription since 2004 and I used it properly and cautiously. It slowed down the disease progession for years. Thanks for all the alternative ways we treat ourselves, including Proper DIET and EXERCISE. I like this liberty we have now. Thanks for the people who kept me in a long leash and trusted my judgement. Life is good as I see it.

In the past months, my one prescription medication is no longer effective since it has a different effect on me now or something I am not sure about the med. I changed my diet to regular diet for more than a year now. Whatever I have done in the recent past, I know I wanted to do it.
If a professional doctor can make a mistake, I can too. Likewise, if a professional doctor can make it better, I can too. Either way, this is my body and I want to take care of it.

I like your blog and it is very inspiring! I just realized, there aren’t as many AS community compared to RA. That is OK since I can easily jump from one to the another anytime. I guess that puts me in the “mixed” category.

By: Annette

Annette — Sat, 23 Nov 2013 22:16:46 +0000

I have been diagnosed and I have been relying on green smoothies with turmeric root, organic ACV vinegar with raw honey and green tea. I still have pain but it helps take the edge off. However, during a recent flare up my Dr decided to put me on prednisone which I’m familar with from using for my asthma a few times out of the year. He decided to put me on Cymbalta which my body totaly rejects. I will no longer use that medication, the side effects are terrible. He also will be starting me on Plaquenil in a few weeks, I’m not quite sure if I want to use that either. I feel that it should be up to each person to decide what works best for them. I’m a phlebotomist and I don’t feel comfortable walking around feeling like a zombie on all these medications. I have to stick people for a living and some of the side effects are hazardous to myself and others if you ask me.

By: Deanna

Deanna — Thu, 14 Nov 2013 18:42:46 +0000

I am newly diagnosed and still trying to get a grip on the idea of medicine to “fix” me as my doctor says. At the same time I was diagnosed my husband and I were ready to try to start a family. We can’t try for a baby and “fix” me too. I am 37 years old so we decided our focus is on starting a family. So I am on Prednisone for now, my OB doctor is ok with it since it is the lesser evils medicine wise. It is keeping me functional and working but not ideal and I am having almost daily headaches and dizzy spells now. Thank you for this site, I don’t have much time to go through it but am enjoying what I have seen. I am interested if anyone has had luck with diet changes. In preparing for a baby and now this I know I need to make some changes.

By: Debra Thorpe

Debra Thorpe — Thu, 14 Nov 2013 12:50:27 +0000

I’m sorry about all the negativity you receive about med issues. Your site is one of the things that gives me hope and an occasional attitude adjustment. You are truly a superhero to many.

I hope you find a way to try biologics. They are still a mixed bag (I’m on miracle drug #5 now), but they have kept me employed and more or less functional. My hopes and prayers are with you on your painful journey.