Information & encouragement to fight RA
Absolutely! I love your response to #4 though I might say it’s like confusing a chainsaw with a chisel, it’s more benign than a hammer. great post! I don’t get much confusion anymore about how RA impacts me, not from family and close friends anyway, they’ve seen what I go through. I wish all RA patients had family and friends that were so understanding.
Number 3 & 4 particularly resonate. I cannot abide the implied or frankly straight out comments regarding medication. It’s almost as if you must be quite stupid to take it with ‘all those side effects ‘. Diet must surely help there must be something your doing wrong! I hate that!!!!!!!
Let me tell the world I am waiting to be approved for Actemra and I am desperate for it – I need it – currently Vegan and taking many supplements as I have for a long time. I still need Medicine.
People have a way of saying insensitive, dismissive things about the various maladies of others. RA, diabetes, migraines, …you name it. They just don’t know better.
But rheumatologists, that’s another story. They should know better. You should write a similar list of insensitive comments from them. Like “I don’t understand how you can still be in pain. The ( biologic) should be working by now.” “Normally I see patients improve by 90%. Something just isn’t quite right (implying you’re not quite right).”
You got it Scott – it’s on my list. there are hundreds of those already in the tens of thousands of blog comments here plus thousands more in social media – can’t believe I haven’t got a top 10 yet, but I will. thanks.
When I was first diagnosed in 2005, a family member told me “well…that’s what happens when you get old.” I’m serious, she really said that. I was 38. The first 10 years, I was mild to moderate. I had flares, but they were very manageable. Some days where bad, but for the most part, I responded very well to the meds and biologics. Then….it all changed. A horrendous lung infection, a collapsed lung, 4 months on antibiotics, two plural effusions with two thoracentesis to drain them, final diagnosis – RD-Lung, and 2 to 4 years to go, literally. Yes, RD can be deadly. I am now prednisone dependent and have gained 60 pounds in a year and 1/2. Yes, and the moon face. At the moment, I am also nursing a new case of pulmonary embolism (Clots in both lungs and both legs) and spent 4 days in ICU back in late November. I was told then, the tissue around the clots has already died (infarction) and I will never breath the same again. I also now have it in my eyes. If only I had a nickel for every time I’ve been told “you can’t get arthritis in your lungs!” and then I have to explain. I’ve started just telling people “just google it”.
they won’t have to just google it when my book comes out! We have to improve this ignorance in the medical profession that RD is harmless.
@Scott – My Rheumy told me just after the lung diagnosis “You’re not nearly as bad off as some of my other interstitials”, as I sat there ready to eat my hair to muffle the screams of pain from every breath I took. I told her, “that’s nice, but I’m not worried about your other patients, I only have the mental capacity at the moment to worry about MY health. But thanks for the encouragement”. Her look was classic….like “oh man, I shouldn’t have said that”. One thing I’ve learned in my 12 years of this monster, doctors don’t know everything.
I am glad to hear she looked like she knew she had done wrong. I haven’t seen that look from an md.
And the way she said “interstitials” as if it’s ok to refer to human beings that way. At scientific meetings I hear rheum docs say “rheumatoids” about people with rheumatoid disease (PRD). That’s why I coined the term – people with diabetes are PWD and no one calls them “diabetics” any more.
In pain all the time .
Tired and never feel like doing anything.
All the things that I use to enjoy had been taken from me.
One day all I want to do is sleep and the next day I am up all day and all night because of the pain.
What do you do?
CRP tripled in 3 months, feel terrible all the time, now on Humira and MTX. I was only on MTX before. I have run through several biologics in the past. None have worked for long. I am praying that this works for a while and maybe gives me part of my life back. Am trying to get off prednisone again down to 5mgs right now. Have managed to lose 2 pounds would like to loose the 20 I gained when they put me on Simponi, it didn’t help my symptoms just made me gain weight.I am always in pain somewhere, my rheumy said you must be in pain given my labs. Told him it would be easier to tell him where I didn’t hurt.
I was diagnosed nine years ago and it hasn’t got easier for me. I send to like cooking and knitting and all of that disappeared because of my hands being all curled up on both hands (except the one I’m using to type this) as I’m left handed.
My rheumatologist is very good and I really like her, she wil let me talk about anything that’s bothering me. I think the biggest thing I miss is going to Church (sorry if I’ve offended anyone). I used to take an active part in the musc team but that all stopped about four years ago.
I was also advised to gave two knee replacements because if my RA was making my knees ache..I wish I hadn’t had one of them done as its words than ever. Sorry if this is to depressing lol totally understand if you dont publish it.
On The best side though I have someone who is greater and I can hide under the shadow of his wings and he will keep me safe. (Again sorry if anyone is offended).
Your comments about what helps you and how the disease affects you are certainly welcome here.
I also missed church a long time. We can go now but miss sometimes and miss many events because I cannot get somewhere at 9am or stay somewhere until 8pm – it’s too hard.
In the beginning, I’d struggle to get there and then miss the ability to sing or talk due to my vocal cords being immobilized – I could not clap, raise my hands, or shake hands with anyone. I can’t kneel. Eventually I gave up teaching in church because I could not get there reliably. I’m just telling you my story so you know you are not alone. I had to realize God hears and sees me and sits with me everywhere I am.
As far as talking about knowing God is our true help, please read the last paragraph here: http://rawarrior.com/about/what-is-rheumatoid-arthritis-warrior/
Don’t apologize for your faith! Believing He loves me and is with me always has become my greatest strength these days!
I used to single handedly set up tables, chairs and anything necessary for events ie wedding receptions for 300 people, and then break it down & clean it all up afterwards! Oh, I was so proud of what I could do in my strength.
Today with the severe RD, I might be able to go and SIT on one of those chairs for an event if I’m even able to get ready first at home, ha!
I don’t apologize for having this disease. Yes, some compassion & understanding is always welcome but what I get or don’t get from others is not my strength today. It’s Jesus. And yes, I have had people call Him my “imaginary friend”. I just laugh cause I know that I know and that’s good enough for me! God bless you Kaz & you also Kelly for this amazing website!!
FWIW, some do “get it.” My rheumatologist told me flat out, “You’re a LOT sicker than you think you are. Here’s the deal…” She also told me that while she treats her patients aggressively, with remission as the goal, she knows and accepts that only 25% – 40% (under the best circumstances…her words) will get there.
She also understands what this disease takes from us. She told me to keep doing something, because “I can’t let it take away everything that brings you enjoyment. Just don’t be stupid.”
Now if I can only get my friends to stop “helping”…
She sounds fantastic. If only your doc could be cloned. I hope she teaches.
I know one other rheum doc like that, not mine, but yes they are out there. This is the biggest need, beyond a cure obviously, that PRD have – that they do not receive appropriate care because their docs are not properly educated. My book, written for that purpose, will be an important first step.
I just got home from work and decided to write a post to vent. I AM SO MAD RIGHT NOW! I am so tired of acting like I’m ok but mean while I literally feel like I am dying. I have had symptoms since I was 14. I am now 50 but feel like I am 80. Who knows maybe I feel 100. I can’t remember the last time I felt good. It is getting much worse lately. My feet and ankles can barely carry me anymore. Not to mention my knees, hips, back and neck. I spend most of my day at my job that I have been at for 19 years. Did I mention my hands? But… back to work…the place that I spend 50 hours of my week at. The place that I am told to leave my aliments at the door and that my bosses dad was in a car accident and didn’t feel good but always responded that he was good when he was asked how he felt. The place where I can barely walk myself but am expected to walk the bosses dog 2×’s per day. The same place I was told that if I change my diet that I could get off of all my medications and yes,,,BE CURED! The bosses dog was sick this week and it was a complete crisis which dumped more work on me. It didn’t matter that I went to my rhuematologist Monday and cried because I feel so terrible or that my blood pressure was through the roof and this past Monday at the doctors it was only 115/60. Maybe that is why I feel so light headed and dizzy but hey…you dont act sick (this is what the boss said this afternoon) No…I don’t act sick but I am sick I wish I could leave my “aliments at the door.
I can so relate to the post and many comments here! I’m newly diagnosed with both PsA and RA (yes you can have both) and am now enduring the quackery, why-don’t–you-just-exercise, and the oh yeah my dad/mom/aunt has that too (when they don’t understand OA vs other types). People seem to think I can just power through the flares and that more time at the gym and to shed some weight are all I need. Thanks for providing some answers I can give to the well-meaning but sometimes unaware folks.
It is so hurtful when you are putting every ounce of energy just going to work every day and no one at work understands. I wish I could just change my diet and be cured. I too have PSA as well as RA. But sometimes I think I have Lupus. The rashes I get, get worse under the ultra violet lights or sun. Plus the plaquinil helps the rash instead of making it worse. It just really upsets me that I am thinking about how much longer I am going to be able to work and my boss thinks nothing is wrong with me. 😢 I am so grateful for this website. People actually understand.
I can remember the day when an acquaintance asked me if I was in pain today. I just said of course, I’m in pain everyday. She was shocked. It never occurred to her that having RA means daily pain.
Good point. Surprise is common. But what bugs me is 3 days later, some people still act like they didn’t know that. I don’t feel believed by most people. I stopped telling the “truth” about it a long time ago because I feel they think I’m exaggerating.
I agree ra 13 years. My response is I am fine or I am ok. I try and put it in a box and do my best to ignore any symptoms I can. Thinking about it all is so constant and overwhelming it’s depressing. I thought I found someone I could vent to but then they started with the u should try this (juice) I heard it cures people smh. I have found only people with this disease understands.
RA is awful and painful I would not wish on anyone. I have tried remicade, prednisone, metheltrexate, humira, sulfasalizine nsaids all which give me little relief, except prednisone and ibuprfen.
I feel best when I just eat green veggtables and especially when I juce them . I cannot eat dairy or grains without a terrible flare. Jucing helps calm my RA, not to a point of no pain, but it drops it from an 8 to 6 pain level.
Folks without RA just are ignorant of the pain unless they see a swollen joint. I have head my knees aspirated over 20 times. If a freind sees my crooked feet they beleive me
Well, this is discouraging. I came to this website along my journey with Epstein Barr Virus (EBV) which I contracted last July. It now looks like I may have RA. It’s only been a little over a week, starting in my left middle finger but it is popping up now in other fingers, toes and a shoulder.
I am of the opinion at this point that my RA is directly asociated with my EBV infection. At least that’s what I hope as some people claim cures for EBV. The symptoms of my EBV and RA both seem to ebb and flow at the same time with my treatment for EBV.
After a thousand dollars spent on traditional medicine to little affect I decided to go homeopathic to relieve my symptoms from EBV (fatigue, tingling, muscle aches and occassional shakes). The anti-biotics I was on only offerred mild, short term relief and the Zithro caused heart pains.
I started with Chapparal mixed with Burdick root for tea twice a day. This was great at reducing EBV symptoms but only treated it and supposedly can do organ damage used more than 3 months.
Three weeks ago I added colloidal silver which has also helped. On 3/07 I woke up with my left middle finger hurting like it had frost bite. It became worse through the week and has now started in other joints.
On 3/10 I switched to ionic/colloidal silver which, when held in the mouth before swallowing is supposed to get it into the blood better than through the gut.
Now to the interesting point. One thing I have noticed is that when take the tea and particularly the silver my joint pain decreases by up to 3/4s about 20 min.s afterward along with much of the EBV symptoms. So at this point my guess is that my RA is from EBV which, I believe, hides in bone marrow much like chickenpox hides in nerve ganglia. EBV has been detected inside T-cells which are created in bone marrow so I believe this is where EBV hides. I’m following cures for EBV hoping the RA is cured as well.
My personal theory, and that’s all it is, is that EBV hides inside bone marrow when it goes latent in the rest of the body even if the EBV symptoms disappear. If and when the immune system detects the EBV it attacks the bone resulting in RA.
Additionally, the fatique people describe with RA sounds like Chronic Fatigue Syndrome which is associated with EBV. Fatigue does not sound like it would be associated with bone deterioration but it does make sense for an infection of the immune system by a virus/mycoplasma.
My approach at this time is to reduce or kill the EBV in the bone to stop the RA rather than simply treat the symptoms.
Right now I’m doing:
Chapparall and Burdick root tea 2x day for symptoms.
Cetyl Myristoleate for bone/joint support.
2 pt.s .0005 – .0008 micron (clear), 20ppm ionic silver orally.
For a proper therapeutic, low-micron (promotes permeability) ionic silver I use a generator and make it myself. Small micron silver will be perfectly clear. The yellow-brown silver colloidal silver is mostly for topical use.
I’ve read several cases of people curing their EBV using ionic silver, including intraveously, but nothing on it’s affect on RA. So, my hope is I have viral RA from EBV. Kill the EBV and I kill the RA which it is causing from my body’s attack on the virus.
Oh how I can relate to this! My best friend told me that “I am not trying hard enough to look at natural ways to cure this”. Unless you have RA, you cannot know what it feels like!!!!!
I struggle with fatigue more than pain. I was diagnosed with RD 5 years ago but have complained about fatigue for the last 5 1/2 years. No matter what I try, excercise, elimination diet, eating as healthy as possible, good sleep hygiene. You name it, I’ve tried it. I have lost 45 lbs and excercise regularly. Most people when they start excercising and lose weight talk about how much energy they have and how great they feel. My Rheum Dr said that I never had RA before…think how much worse I would feel if I didn’t excercise. I have to admit that response really annoyed me but what really drives me crazy is when people say we’re not as young as we used to be or that they’re tired all the time too. I never complained about fatigue and I have never experienced anything like this. I never feel energized and most days feel like I’m just going through the motions because what’s the alternative. My husband has said he doesn’t even recognize me anymore….either do I most of the time.
Just a Life with RA
OK. Where to start? I am a man who raised a family, who is faithful and dutiful to his wife. I was positive in nature and outlook. I always tried to help others and gave freely of myself and my resources to the people I loved and cared for, and even to those who care less for me. I believed that there wasn’t anything that couldn’t be worked out, that with hard work and a positive attitude everything could happen and for most of my life this served me well.
I was diagnosed with severe progressive Rheumatoid Arthritis in late 2011. Saying, for the past five years, I have not fittingly handled having this disease, well, that is just a huge understatement. Feeling it’s sort of like when Mary told Joseph that things were going to change a little when the baby arrives.
This disease attacked me like I mistakenly walked down a really dark alley at night and before I had any time to defend myself, I got mugged. I was getting my ass kicked, over and over with no let up, by something or someone I couldn’t see or comprehend. I was getting thrown in garbage and beat down with every step I tried to take, no matter what direction I franticly ran trying to get back out of that ally, I just didn’t know which way is out.
Severe whole body Pain mixed with devastating Anger, bubbling depression, huge chronic fatigue, none of which I could control. I felt crushing uncontrollable grief and didn’t know why. I was outraged about everything and everyone that I didn’t think fit within my tightening realm of control and I exhausted myself trying to control everything and everyone.
So how has that worked out for me? Guess what, none of that came close to working out for me or made me feel even the slightest bit better.
This disease consuming me with the pain and anger, I drove all of those people and things from my life and then got angrier when they wouldn’t understand what was happening to me. I surely didn’t understand it, but I was mad as hell because they should have and didn’t.
Now, here I am. Alone with just my disease. My wife of 30 years, out of here, because “it’s just arthritis, I have it too”, “it can’t hurt that much, I think you’re crazy”, “I really don’t want to hear about it” , “you are no longer the man I married”.
My three adult children, MIA, “we take Mom in the divorce”.
My six grandchildren, “sorry grumpy old dude, just mail the presents”.
All of my real friends, “Bro, AMF”, “you used to be so fun, but now you’re just too hard to be around”. That’s how I saw it.
My mistakes are boundless.
Thanks for all you to bring awareness. I would never wish this on anyone but there are times I think it’s the only way others could really understand the challenges. For most of us, each passing year gets a bit rougher. I haven’t been able to work since July of 2015 and was just denied disability. After putting myself through grad school, working through it, this is the last place I saw myself in my 50’s. It’s not a choice to file but a necessity. It took everything i had the in me to file. I felt like i was giving in to the disease. The ra led to a ruptured ptt and between the pain, side effects from meds, and the inability to walk I thought it would be enough for someone to make the right decision by me. I did the best I could for 15 years. Things are progressively getting worse. I don’t understand what ssdi bases decisions on when medical records support the case. The disease is bad enough….now they add the stress of dealing with a broken system that could take years to get through.
Best of luck to all you ra warriors out there!
Jamie, I don’t know if it would help and I’m sure you are using a lawyer at this point so ask her, but I’d be glad to write a letter of support as Pres of RPF, or testify for you if you have another hearing. much love. xo
I have learned to priortize, ALOT. I try to keep a clean home, but I don’t sweat it. I love gardening so I do it, even knowing I will hurt like H___ afterward. It brings me joy to see the fruits of my labor. I can’t do everything that needs to be done, but, I do what makes me happy.