We are all in the same boat so to speak. We are all living with our bodies and the things they do to us. I have on many occasions said, my body has betrayed me. Should we really attack, badger, and belittle each other for the decisions we make. I have never told anyone they should not do something or that I think they are making a mistake. I have asked friends to be careful and keep a close eye on themselves. That was merely out of concern though. Never would I degrade a person for the decisions they make. Don't we all deserve that same curtesy. I do understand how excited people are when they "FIND" a new regime. Could we all just maybe sit back and think before speaking. You never know how a person may react to what you say on any given day. There are times I take things to heart. I feel attacked and belittled or degraded by things that are said. Not necessarily because that is how the person meant it, but because that is where I am. It is hard to always be up when you are always in pain. I am trying to monitor my interactions with everyone, simply so I can help instead of hurt. I would hope and pray that we can all support each other in this journey.
How a person with Rheumatoid Arthritis decides to treat their disease is a very personal and soul searching one. For most of us it is anyway. Personally I sit down and actually research a medication before I start it. Usually I am given a choice and I make an informed decision on which to go with. That being said, I don't delve so deeply that I scare the crap out of myself. I have done that before and it is too stressful. Stress isn't good for a person who has any kind of illness, ours feeds off of it though. Too much stress = flares = having to up pain medication = being miserable and or the inability to function. Unless I am starting a new biological I do a cursory look at things like, what side effects do I need to go to Accident and Emergency, if I experience. I also check to see if any red flag articles have been published, that will keep me from trying the medication. I have only found those types of articles with biological medications though.
After I start the new med I pay close attention to my body for a few days. If I experience something that I think may be a side effect I will again look the med up. If it is but falls into an acceptable category, then I continue on. The thing I have found out about ALL the medications I have been put on is that the side effects I have experienced are self regulating in the body. SO once my body grows accustomed to taking the med the side effect usually lessens and go away after a short period of time. Like when I started plaquanil, I had a fairly bad headache for about six weeks. Yes in the life of a person living with RA 6 weeks to adjust to a medication is considered a short time. Now even I have to admit there have been some drugs, take Enbrel for example that I almost quit because of the side effects. I had such horrible migraines after starting it, that the relief I got from my RA Symptoms didn't matter, while I had the headache. Some of those headaches lasted for days as well. I did continue on though, and the headaches lessened.
I will never say that the path of taking medications for our disease is an easy one. It isn't, we have to consider it carefully. The thing is that even if we did decide to go and change our diet, and limit our intake of certain foods and substances, we could still be suffering damage. If you aren't paying attention to what your blood markers are saying, you aren't paying attention to your disease. My disease despite being on a biological that is lessening my pain, is still active. I am still suffering damage and swelling despite the drugs. Before you say, well then you should cut out certain foods. I have tried that, in fact currently I have cut out all the added sugar in my diet. Being a Southern Gal from Tx and Tn I love my sweet tea. I cut it out though, and it has made NO DIFFERENCE what so ever on my inflammation. I have made a huge change in my diet and calorie intake, in fact on top of the sugar I have also cut out caffeine. I didn't do these things for my RA I did them to be healthier overall. Is that happening YES, but again it is not making a difference with the RA itself. What I find so interesting is that the research I have done on diets for RA, they all say, it's proven, it's tested, but I have not found any actual proof.
“There are different theories behind certain diets,” said Kare Hagen, the lead review author. “There are some reports showing that food allergy or intolerance is present or even common in RA patents.” However, she said, “No body of evidence exists for dietary intervention for RA.”
Read more:No Proven Role for Diet in Treating Rheumatoid Arthritis - Arthritis -Dieting -http://www.health.am/ab/more/diet-in-treating-rheumatoid-arthritis/#ixzz1kurrm6ts
I have found no proof that a gluten free, sugar free, or any other diet improves the symptoms of RA... Also I have found no proof that alternative therapies improve symptoms of RA.
Rheumatoid Arthritis has no known cause and no known cure. One thing to consider is that if and when we are put on immune suppressants it is in order to stop or slow down our immune system. Why is that important you might ask? Well because our immune systems are the very thing that is causing our problem. If you are going the alternative approach and improving the way your immune system acts, then are you really helping your case?
I am glad that so many people take in upon themselves to try and improve the condition they are living in. I also think that alternative therapies and medications are great, but not at the risk of your health and mobility. If you want to try an all natural approach to your RA that is fine great even. Although I would behoove anyone to take a measured approach. If you want to do this, get together with your medical team. Let everyone know what you are doing and KEEP AN EYE on ALL your blood levels. From experience I know that damage can be done without pain. I have an entire wrist that is basically useless, and never once before the damage was done did I have pain or noticeable inflammation of any kind in that particular joint. Our bloods let us know if there is inflammation we can't see. Our Rheumatologists do more than write scripts for us. They do joint counts and they keep track of how active we think our RA is, and how active our bodies tell them it is. No good Rheumy goes by bloods alone, just like no good Rheumy goes by what we say alone. That is how it should be. If we have pain, and our RA appears to be in control it is time to start looking at other possible scenarios. Autoimmune disorders tend to run in packs. Personally I have 3 known disorders and migraines to boot. NEVER should you discontinue the use of your medications because you are fed up with them, or because you think you know better than your doctor. I think many times we just don't feel that our doctors are "hearing" us. If that is the case then it is time to have a frank conversation with said doctor. Never should you leave the office feeling emotionally like you have not been listened to. If your doctor does not like the idea of what you want to do, see if you can compromise. If they really just don't want to listen then it might be time to change doctors. The thing is that quite a few of the all natural treatments can do good, but if implemented in the wrong way they can be bad as well. As a young adult I went to a church once where a man who was in remission from cancer started supplements. He did really well for a while, but in the end when he stopped the supplements he had no immune system to speak of. He ended up in a worse position because instead of consulting a professional he did it all himself.
I have to say I have fallen prey to the "miracle cure" fads. I heard that so and so stops it in it's tracks. yes it seemed to, but ultimately didn't. There is a reason we are told to wait 6 months before we decide a medication has failed. That is because things take time. It takes medications a while to get into the system and work. If you aren't willing to give it time, you won't get any results. It also takes time to see if an immediate improvement from an alternative therapy will continue.
It bothers me beyond belief when people tell an RA patient what they think that patient should be doing. If they don't have it, they don't have a clue what we go through on a daily basis. It is our disease, our pain, and our decision.
The thing is the same thing applies to our daily lives and interactions with our friends and families as with our medical teams. We should never leave a conversation with a friend or family member thinking sheesh they just don't get it. We should put up boundaries, and make the family and friends adhere to those boundaries, because they are important for our health. We need to find our ways to cope with our conditions. It is important that we are okay with the decisions we make. That is why I think the online support groups are so great. Anytime we have one of those, "You should be doing this" conversations with anyone you can at the click of a mouse be with friends.
I think what I am trying to say is that you should feel empowered by the decisions you make. We should never question ourselves. We make the decision that is best for us at the time. We can only make decision based on the information available to us at the time. Don't question yourselves, yes you may make a decision that does not ultimately work out, but you made that decision because it was best for you at the time. Never let anyone make you question yourself. You are your own best advocate and that will never change. No one will ever be as invested in your health as you are. Learn what you need to know and stick to your guns.
