I have had severe RA since my late twenties...thought my outdoor days were over. With help of my podiatrist as well as great rheu and his wife my Internist, i went on week long backpacking trips!! I also have lupus with MCTD and other health problems.
My point is...please do not let the RA stop you!! you sound like a fighter and I am positive that you are fighting to have your life. There is always hope!! We never know how week later we might feel or every year from now. Might have found the right combo that enables us to have a great life again!! Good people are working on just this and i do believe that soon a cure or better drugs etc will help us. . My nephew in law has Psoriatic Arthritis..started getting it in late teens same as me..he just climbed Kilimanjaro !! So proud of both my niece (has malaria) and him!!
So just know even with RA and fibro there is hope!!
Excuse me if I'm repeating something from previous posts. I didn't take time to read them, but will later.
Tiana, I think that for many people the treatment they choose is a financial matter or distance between patient and other types of care. What will my insurance cover? What can I afford to invest in for my health? I find it really sad that most insurances cover conventional medicine and no alternative medicine choices are paid for. And then there are those people who live so far from any city where alternative care is offered.
I use a mixture of traditional American meds and alternative. I love, love, love acupuncture and chinese medicine. I feel the same about chiropractic and gentle massage. My current insurance pays very little for these each year. I'd go to acupuncture twice a week if I could.
You use whatever works for you, Bravo to you for standing apart from what traditional medicine would have you do.
Tiana, if you are like me, my body doesn't do well with pharmaceuticals. Dietary and lifestyle changes, plus learning about other healing traditions has helped. Stress reduction is great, but I often neglect it. I'm learning, slowly, and have to be very careful, more than one diagnosis.
We all are different, and what is golden for one person is poison to another. By finding what is useful to you personally, and ditching the rest, you are making your life better. Good for you! I'm sorry to hear your "support group" is a bit closed minded.
Fibro chu : ) So agree with you about other fibro sites ....I had to leave , no positive talk all complaining . Does not help the soul at all and was bringing me down . To the subject at hand my TENS unit is my best friend , along with a multitude of vitamins , ice packs , heating pad ,mediation and yoga. I do take take 2 traditional meds . but they help a lot . At one time I was on at least 7 meds. ....no good , felt awful and totally out of it !! Talk about fog , everyday was a haze. I am so happy that is over with and I have moved on .
You are a fighter and I have every confidence that your efforts will result in you feeling better.
In recent weeks, I've experienced episodes of horrific pain, 9.5 out of 10. I would sit in my dark room, head in my hands wondering what the hell I was going to do. Clearly, the pain pump was not working and the medication they approved for breakthrough pain (vicadin) is not that type of drug and therefore, did nothing for my pain.
Finally, I decided to get back to basics and even though the very last thing I wanted or felt I was able to do was move, I moved. I stood up and walked to the door, shaking the rust out of my arms and neck, kicking my legs a few times. I then walked back to my spot and laid down. There were tears in my eyes because of the pain and my neighbor must have wondered why I was groaning so much. Every half hour, I repeated the exercise.
Guess what happened? Well, the pain did not go away, but it became much more tolerable.
Movement is the key. The human body was not meant to stay still, not until we die anyway. Use it or lose it is my mantra. That, and wet the sponge.
Thanks...but i think you are the hero here by doing what you felt was so wrong but your body knew it was the right thing!! i know how hard those steps were....i been there. I been out removing snow and started crying because it hurt so bad...but i could not get to the doctor unless i removed the snow! I am not kind of person who cries in public...if anything i do my best to avoid it.
If you know of others who need to move and are afraid...or maybe you even might what to take a look there is game called SUPERBETTER.com. I saw the woman behind it on TED Talks. She was bedridden and her body said she must move also. So she made a video game to help herself and other people move. It is like you get points for just moving out of your bed and to the kitchen....small steps but she bumps it up. Plus people behind it are very interesting and have really helpful sites about Pain and how it works in our brain...what we can do etc.
So you must like photography if you have dark room...thought only my dad still had one! lol! He does ansel adam style of b/w photos. At least it sounds like you do have things you love or enjoy.
I am seriously very inspired by you...i know exactly how much guts it took and still does. I am glad you listen to the small voice inside in you that knew what was best for you!!
It could possibly be that they feel someone is taking advantage of her but than you should still be kind. I do not get it but know that in groups dynamics can be very strange and many have click of friends and they do not want outsiders.
This is where a really strong but kind leader is can make the support group better.
But i belonged to one where there was not many people, maybe 20. There was very clear click going on between the woman behind the site, administrator, and her friends. A newbie wrote in about how her religion was great strength to her. She did state what kind of religion it was. The leader attacked her for bringing in religion to the group...it was not acceptable etc..just really shamed the poor newbie. If that was not bad enough, than all the leader's friends went after the newbie. The newbie answered and you could just hear the tears. it was really heartbreaking.
I did stand up for her. I tried to do it in very diplomatic way..so not harsh or unkind. Well i was than told that any thing i would post had to be approved from now on. I was okay with it as i been going less and less.
So what happen is everyone left that site except the few friends. I checked about 6 months later and there was less than 5 people in it and they were saying what has happen to everyone? Anyone know why they all left? Well not much longer i got a noticed the site was closing due to lack of membership. just deserts in a way!
But my point is ...people can just be mean...i get sometimes when we do not feel well we get short. It is okay just apologize later.I am sure all of us would understand. i am just glad that this site has nice people on it!
If the group is affiliated with non profit company maybe she can contact them and let them know what is going on....it might at least have someone look into it.
Hero? Not me. I'm just trying to get by the best I can. Back when I had JUST FM, I was able to work despite the FM. I so long for those days. I was forced to go on disability in March of 2000. At the time, the plan was to be off work for six to nine months. Unfortunately, the pain that forced me into disability was diagnosed as RA...and I had it bad. Chronic fatigue followed in 2002. During all this I was home raising my daughter, volunteering in her classes, able to be there before and after school. It was the best time of my life (other than the day she was born). In 2007, I had two major back surgeries for spinal and forminal stenosis. It was at this point, my wife left me unable to deal with my continuing disabilities. We've been separated for almost six years now. Surprisingly, I met a woman and fell in love again - something I never thought was possible. In March 2012, I woke up unable to stand or walk. My back is so screwed up now in so many ways the only thing they can do is attempt to control the pain via an intrathecal painpump which feeds medication directly to my spine. After twenty months, my new love left me for the same reason my wife did.
I am alone and have accepted that I will be for the rest of my life. I've loved two women and because of my disabilities, I've hurt them to the core. They loved me but made the choice to get away from what I am dealing with - they loved me but they left and I know it hurt them tremendously, but the pain they felt was less than dealing with my disabilities. Frankly, I do not blame them and harbor no ill will. This is why I am alone and will be as I will not put anyone else through thecaretaker hell I put my two loves through.
So trust me, there is no hero here. I'm just trying to survive the challenges God has placed before me. As to the dark room, I should tell you that when my pain gets to 9+ or I am dealing with fatigue, I tend to be sensitive to light, sound and smell (figure that one out!!), so I draw my shades and sit in the dark - not a dark room. I do have many hobbies but photography is not one of them, though I love taking pictures of my dog and my daughter with my camera phone. For the past two years, I've been writing a novel. At 70,000 words, I am nearly finished and have given myself a date of November 30 to complete the final edit. At that point, I'll be sending it out to publishers and plan on papering my wall with rejection letters. I thoroughly enjoyed the cathartic process of creating this novel and starting January 1, I'll start my next one. I already have ideas. As to hobbies, I'm addicted to The Walking Dead, love to read (just started the Steve Jobs Biography by Walter Issacon), renting books from my library through my kindle as well as words games on my kindle. I also try and spend as much time with my kid as possible but she is a senior, captain of the #2 ranked varsity volleyball team, is taking four AP classes in the morning and goes to college in the afternoon, chairs several committees in shool and has a busy social life. I used to see her everyday. That is not the case anymore.
I sent you friend request. We have a lot in common both as to health issues plus The Walking Dead we love as well and read a lot too!
How old is your daughter?!! My nieces did same thing..AP with college while in HS..you should be very proud! Not all students have that kind of ambition or ability. Does she have any idea what college she like to attend plus what she like to study?
I love that age so much!! They have all their life ahead of them...and they feel it...feel like they can take on entire world! I just hired a neighbor's son to help us stack our fire wood. He is sophomore here and already i am bugging him about school, music what he is passionate about. Sure he thinks i am strange...though he known me most of his life. I asked his mom if we could hire both or one of her sons...well guess this one went out and bought a large amount of clothes....so he needs the money to pay for them lol!
I think it is funny about the dark room mix up!! Actually i believe that it is kind of normal for people with fibro to be sensitive to those...just you are more than a lot. I am sorry. I hate loud noises...living in a city...which i tried about drove me nuts all the constant noise.
I need to rest...but answer my request and write you more. Just feel not comfortable sharing it out with all. . You take care..hopefully will write more later!
Kaiser had employed acupuncturist for over 20 years that I know of maybe longer. My mom was getting it from her Pain Doctor in the mid 80's and might be earlier when she started. They also did massage...i had some in the 1970's and my mom again in 80's. Both got them in the physical therapy dept. My rheum would prescribe folic acid which is supplement plus another i just cannot recall in late 80's until i left.
I think it just depends on who is your insurance and /or doctor and what they are willing to push to try and help their patient.
I know many doctors who believe in different ways of healing..what many would and do call alternative.
But when one is sick and in pain, it does not matter what their background might be, most people just want to feel better. Including doctors!!
Eastern medicine is becoming more accepted but even a doctor of mind who came from China says that it is not either or one way.....as in not neither western nor eastern ..neither is perfect. It is when we take the best from each and do what really just helps our patients is what matters the most!!
I remember my sister watching acupuncture surgery performed at Virginia Mason Hospital in Seattle...they used the acupuncture as the anesthesia and the patient had brain or some major surgery and never expressed any pain. She was astounded! This was in the 80's ..again!! So doctors are open to it...we just have to get it where it not even thought of as alternative!! But it does not always work...for everyone...but often this is true in general about drugs, surgeries etc. Still, hopefully it will be included in most health coverages rather than less.
They are not covered by mine either and I so want to go all natural. Can not imagine how with the degree of pain I have. If only they would approve a massage for in the beginning of the week and the end . Maybe in between acupuncture. Sometimes I can not even think I am in so much pain and would welcome some hands on treatment instead of choking yet anther pill down my throat !! My goal is to work out again with weights ....am I dreaming ?? Probably ...do no know if u have seem any of my posts , but ALL my energy is spent on opening up a Furniture consignment shop . Decorating and furniture is all I know . In Massachusetts when you rent retail space you are responsible for renovating putting a fresh coat of new paint on the walls, correcting any ceiling problems , upgrading bathrooms and so much more . Very costly and just exhausting with Fibro. at the moment . Its 2:30 am and no sleep fro me so far . I day dream about all of us meeting and being able to say in person just what has happened to each and every one of us . To have someone look you in the eye and say I hear and understand what you are saying would be music to my ears !! Keep on keeping on all there has to be an end to this madness.
Sure wish there was an easy button we could push and a miracle pill would appear to take all these horrible symptoms away.... but.... oh well. So until that happens we have to listen to our bodies and do what works for us.
I love reading about all the different ideas, and things that work for each of you. It opens so many more options for me. So... dont worry about what others say, you know what is best, so stick with it and try to enjoy life to the best of your ability.
thanks for acknowledging it. Kaiser was thought of as something very negative by many when i was kid in the 1960's on. My brother had autoimmune health problems and no one knew what to do or how to treat him. They did not even have clue exactly what was wrong with him. But Kaiser always got him the right doctors even in the private arena if it was thought to help him.
I personally had my best doctors there. I could go on and on about them and why i liked Kaiser but the bottom line was my doctors. All my doctors genuinely cared about me as a person. We were friends not doctor /patient. I am speaking of the team of doctors i saw regularly. I knew about their families as much as they did mine. I still miss them so very much. I hear from them off and on.