Beacon of Light in a dark tunnel!

I just want to say something regarding this past years roller coaster.

I , as many of you know, have been in a year long Odessey.

From having to fight for testing to non stop testing , drugs, specialists and a very long list of labels. Bottom line, I will not get better only much worse. Despite this realization, I feel free for the first time.

It suddenly came to me, why did this happen? I think it is time to STOP. So my body brought me a sudden and complete stop. We are all so busy doing we simply forget to be. I have chosen to take back my body. I will not allow any more experimentation. I will be the only person who decides what I will take and what I will not. I intend to let my body heal itself. I have western medicine a year now time for a natural approach. Here goes, I am doing this under doctors supervision. My Rheumy is fully aware of what I am doing. She is very supportive. She knows I went ten yrs without treatment so I now I can handle it. She has arranged for an Internists to see me in lieu of GP. She is the bomb. Find a doctor you trust. It makes all the difference in the world. I think that many health care 'professionals' loose their humanity when faced with so much suffering. It is a survival tool that in my experience, simply does not work. The key is balance.

I for one have , despite the pain, begun to stop and smell the roses. I no longer take the many wonders we have for granted. The ability to walk, care for yourself and simply to be. I was always working fourteen hour days to avoid dealing with the noise my body was making. Now I am learning to listen again.

Stop all the noise from outside and listen to our body. It will never steere you wrong.

Not all doctors, people, health care profe

18 Replies

  • Fair play and good luck in your journey. Someone on here once told me " its your disease, you decide how to treat it "

    Those words stayed with me, keep us updated on how it goes and again, good luck.

  • Good luck with everything I hope things work out for you. I have never had bad ra problems but recently I was trying to get kind of forced into going onto these stong meds but I tried to politely refuse to do that. Since then I started seeing a reflexologist who told me that I still have gut issues etc etc and I saw a Chinese acupuncturist. Have also had tui nu massage etc. I have also been getting a lot of advice from the Melissa ramos forum. At the mo I am feeling great.

    Really hope things work out for you.

  • They must be wonderful but when you can't afford them because your on disability . I wish you all the luck in the world and i look forward to seeing your progress.xxxx

  • hey Sylvi I am sorry to hear about your struggles but even though no one knows my financial situation the thing is I am still a young girl who wants to have a good life for themselves and I don't want to think that I have to be this young person who is gonna have RA for the rest of my life and be on meds. I have been depressed or anything with it and I am a super happy but the thing is even if I had no money I would still have to find a way to treat my RA naturally because there is no way will I will let myself be on meds for the rest of my life. Ok I know some peeps think I am crazy to say that but we all need to do what is right for us. Unfortunately there is a reason why I don't share any of the alternative therapy stuff I do on here cause regardless of what our individual situations I often feel like on this forum not taking meds and doing other things to treat out RA is frowned upon and even though I know you have not said any of this in your comment I am just being honest with ya. Look after yourself.

  • I am not going to condemn you for your choices and i think your very brave to do what your doing. At my time of life it is too late for me. I have used a chiropractor when both hubby and i worked and i found them helpful. I say do what works for you if it is through alternative medicine well go for it i say. It isn't frowned on here it is about the disease and the most importantly it is about the people who have the disease not what they take. Some things work fo some others it doesn't work and i know there are some on here who are doing what your doing and have had a lot of success. I look forward to following your story so please post on here what your doing.xxxxx

  • oh yeah Sylvi I know you haven't but I have often had the feeling that some people think that once you are diagnosed with RA it is something we should have to live with. All I will say is the reflexologist has picked up things in my body like my nasal congestion and how even though I no longer had gut issues they are still there and many other things. Even me being on antiobiotics as a child as made my body quite toxic etc.

    Sorry if my reply came across as a bit harsh but I just wanted to stress that even if I had no money I don't want to be one of those people that go to the drs take there meds and leave again and never think to myself is there anything I can do to help myself. I would of never known what a state my body was in unless I started seeing an alternative therapist and it is actually scary to know that my body is so damaged.

    Anyway sorry about the rant/take care

  • You have nothing to be sorry for darling and you can rant all you like,you didn't rant at me and what i agree with is if we could afford it would look at the chiropractor again. Some people are trusting of their drs and some people suffer more from the drugs than is worth it. I am happy with what i am on and i am happy to say i am off the steroids ever since i had my weight loss surgery whichis a bonus for me.xxxxx

  • thanks and I agree with you tbh I have a wonderful rheumy he always sees me when I need to see him and he is a great guy and even though some of the drs at my hospital are like what is this crazy girl doing we have all got to do what is right for us. I don't know about other practitioner but I know that my reflexologist will charge less if the person does not have much money to spend she always tells me she just wants to help people. I have my Chinese acupuncture at the integrated hospital in London but we all need to do what is right for us for me I just have never wanted to be on long term meds I know that some people think I am crazy to say that and even the guy that I was kind of seeing is like what are you doing but after my slight blip as I like to say I feel better than ever.

    We will see what happens but the truth is I want to be able to travel more and continue being self employed and know that I can run round like a crazy person but that is just me we are all different.

    Pleased to hear you are off the steroids and I hope your feeling ok. Wishing you all the best :)

  • Lol my brain works faster than my fingers. Sorry for the rant and incomplete post.

    I was going to say not all doctors /health care professionals are created equal. There are some excellent doctors out there and fortunately I found mine. Doc Mollie is fantastic. A doctor who listens has proven such a rarity.

    I am beginning to feel like myself again. I start TM this next week and biofeedback. Both have proven beneficial in the past. I at least want to entertain the illusion of control over my own body lol. At least it can do no harm.

  • Just wanted to say thank you for video's. They are very effective. It will take some practice but so far so good. I have not taken any pain meds for close to three weeks and I am managing very well. I am interested in as natural an approach as we can muster. I will however , continue to see my Rheumy etc. But now that I am developing a more targeted approach to treatment. Now that I know what is normal for me, we can begin again. I may not survive but will enjoy a better quality of life with time remaining.

  • Good luck to you darling your a braver warrior than i am.xxxxxx

  • Good choice if I could afford I would do that just had to have my mental health assessment done because i have asked for a break from medication that has made me so I'll the doctor have said I have no mental health problems and were amazed that I have been assessed for making that choice any way I hope things go well for you let us know your progress

  • I am not sure why a doctor would suggest no mental health problems. I believe that with chronic illness and chronic pain mental health issues are inevitable. Your entire life is altered by this type of illness. I also have Massive Distrust of all psychiatrists/psychologists. As a student I discovered that most , myself included, are attracted to this field of study because they are attempting to resolve their own issues. My one encounter was a very bad experience.

    I was hospitalized because my knee blew up with no apparent cause,. The only bed available was psych ward and head of ER was a shrink. I was also having my one and only experience with hallucinations. (Lupus perhaps). He decided I was suffering PTSD . I had surgery then was discharged with a brown bag filled with drugs. I disposed of them on my way home. Later that afternoon was right back in ER with DT's. I had to be taken off those drugs gradually. Needless to say, now hell will freeze over before I see another shrink. The one I refer to subsequently lost his license.

    That is probably not very helpful. My advise is seek support but trust yourself. Do not be afraid to question your therapists. Remember when it comes to you, you are the only authority. Your mind and your body, you decide what is right for you.

  • Yes good luck and it will be interesting to see how you progress xxx

  • Good luck and all best wishes !!! Please do share your experiences here 💐🍀🤗

  • I wish you all the very best on you journey, and please keep us up to date. Thanks.

  • Today marks the third week without drugs. I am definitely needing to restart heart meds now that I have a baseline. My heart rate and blood pressure are very erratic. Once my Cardiologists deals with blockage perhaps TM will be sufficient way to keep things stable.

    On pain and mobility things are great. I manage very well with breathing, excercise and meditation. It becomes easier with practice. I want to make it an instinctual reaction. I want to be able to consciously regulate body function . So practise , practise, practise. Despite rainy weather I do not feel that bad. So far so good.

  • All the best to you on your new journey. Please keep us informed on your progress.

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