My advice for the newly diagnosed. #whyistherenospoonemoji
Not today Justin
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@makearthritisstophurting
My advice for the newly diagnosed. #whyistherenospoonemoji
RA problems:
Trying to seem normal and like youāre not in immense physical pain to accommodate the people in your day to day life.
http://www.worldautoimmunearthritisday.org/guinness-world-record-attempt.html
Tired of hearing āYouāre too young to have arthritisā? Awareness is coming, get involved!
Tag @spooniestrong if you pledge / reblog too!
Man I just love it when my entire body is in pain, go away ghost of arthritis past , and you too scoliosis / hip pain of the future , at least carpal tunnel of the present is no where to be found... If only I lived near a rheumatologist that my insurance covers .. But I don't. Just wanna know what's going on with my body , is that too much to ask?
Seronegativity for Dummies: A Lesson in Seronegative Blood Results
How many times have you heard of doctors relying solely on blood results and not enough on the physical symptoms? How many times has your family ignored your doctor(s) claims of illness despite blood markers because itās āunheard of?ā How many of you were confused when your doctor told you there was nothing wrong because you showed no Rheumatoid Factor or Positive ANA, but you felt horrible? How many of you never actually understood the science and reason behind seronegativity? How many of you donāt even know what Seronegative means?
A Lesson in Seronegativity: ANA, Rheumatoid Factor, CRP and ESR.
When I was first diagnosed, I was told I had Seronegative Autoimmune Disease, most likely Rheumatoid Arthritis (though others still remain in the mix). I was told that 70 years ago this disease was a life sentence and crippled and killed its victims, but now there were treatments and remission. I thought within a few monthās time and with some pills, Iād be better. I took it head on. My family didnāt take it at all. The lack of a Rheumatoid Factor meant I couldnāt possibly be sick. It left a doubt: is this really the diagnosis? Will it change in a yearās time? What if theyāre wrong? It took opinions from three different doctors and excessive suffering before my family accepted the illness for what it was. I remember the first call I got being told my SED rate and CRP were elevated above normal levels. My response to the nurse on the phone āSo Iām NOT crazy!ā I was elated. But for some, seronegativity creates doubt and confusion, perhaps denial.
What does Seronegative mean?
Seronegative means that your blood does not produce the antibodies that show up when tested for various autoimmune diseases, such as Lupus or Rheumatoid Arthritis. The most common antibodies to show up are called Anti-Nuclear Antibodies and the Rheumatoid Factor. Both are indicators of autoimmune disease, but as well all know autoimmune diseases are rarely by the book. It is possible to have these diseases without showing positive blood work. That is when your symptoms and inflammation rates (SED rates and C-reactive protein) come into play.
If you know in your heart that something is wrong, do not stop searching for answers. Itās unfortunate, but not uncommon for physicians to make decisions and diagnoses based strictly on blood tests. While there is nothing wrong with having faith in medical testing, there are exceptions. They are not all that rare, either.
How common is Seronegativity?
Not uncommon at all, though it is often misunderstood or not recognized (and this usually results in a misdiagnosis or no diagnosis at all). About 30% of Rheumatoid Arthritis patients are seronegative, which is not too small a percentage when you consider the amount of people affected by RA. Seronegative Lupus is not nearly as common as S-RA, but it is possible and does happen. This seronegativity can occur in hoards of different diseases, from Rheumatoid Arthritis to HIV to Lyme Disease. Stillās Disease, RAās very complicated/rare sister-disease, is distinctly marked by seronegative findings, which make diagnosis even harder.
What does seronegativity mean for your disease course? Is there a difference between seronegative and seropositive patients?
Generally seronegative patients do not develop Rheumatoid Nodules, but there are always exceptions to this finding. There is also speculation that seronegativity is an indicator of less severe disease and slower progression, but again, there are exceptions. I am one of them. It is so so important to remember that whenever you read any online health article that you keep in mind no patient is the same. I have a fast progressing severe case of Rheumatoid Arthritis, yet I am seronegative. Someone else might have joint pain here and there, no other symptoms, and be seropositive. Never compare yourself to others or studies, because those studies did not study you. Be educated and knowledgeable, but do not put yourself into those articles. This one included.
Once seronegative, always seronegative?
No. Seronegativity can changes and often does. I am tested regularly for RF and a positive ANA (among other antibodies) because with disease progression and immunological changes, your blood results may change. You can also be seronegative for one disease and seropositive for another.
What is SED rate and C-Reactive Protein?
SED rate (aka ESR), or your erythrocyte sedimentation rate, is an indicator of how high (or low) the inflammation is in your body.It is nonspecific, meaning it does not indicate where the inflammation is in oneās body.
C-Reative Protein (CRP)ā another indicator of acute inflammation in the body. It is also used as a measure for heart disease risk. Those with high CRP rates are at an increased risk of having a stroke, heart attack, or developing vascular diseases.
What is Rheumatoid Factor?
Rheumatoid Factorā Your Rheumatoid Factor (RF) is an autoantibody, simply put: a protein that is produced by the immune system. Autoantibodies are what attack your own tissues by mistake. Presence of RF indicates autoimmune disease, such as Rheumatoid Arthritis, however an absence of RF does not mean one is disease-free.
What is ANA?
ANA or Anti-Nuclear AntibodiesĀ are autoantibodies ādirected against [ā¦] the cellās nucleus.ā Like RF, they are markers of inflammation and autoimmune disease. An ANA test is performed using an immunoflorescent techniqueā light microscopy using florescent dyes to examine different cell substancesā and results are measured in titers (measure of concentration).
A normal titer is about 1:40 or lower. Higher titers are indicative of an abundance of these autoantibodies and thus, autoimmune diseases, most commonly Lupus, but also in Rheumatoid Arthritis, Sjogrenās Syndrome, and multiple other conditions
You can have a positive ANA and be completely healthy or you can have a negative ANA and be ill.
Can you have seronegative inflammation markers and still have an inflammatory disease?
Yes. Whether you have RA or Lupus, you can have negative SED rates or C-Reactive protein rates.Ā
In Lupus patients, tests for CRP may be completely normal unless synovitis (inflammation of the synovium, the lining of the joints) is present.
Meaning that one can have serious inflammation, be in excruciating pain, and still seem completely normal. This finding is often overlooked, not understood, and puts patients in the dark thinking they are crazy.
So if this is the case, itās important for patients and doctors alike to realize that having seemingly normal lab results does not mean a patient is in remission.
Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Ā Further Reading:
Antinuclear antibody-negative lupusā¦does it no longer exist?
Seronegative Systemic Lupus Erythematosus (abstract)
The Many Myths of Erythrocyte Sedimentation Rate and C-Reactive Protein
Erythrocyte Sedimentation Rate, C-Reactive Protein, or Rheumatoid Factor Are Normal at Presentation in 35%ā45%ā¦
This made everything click for me! So I'm not crazy , I wonder how I can ask them to consider this next time I go in
Hey does anyone with jra/ra/ scoliosis know of a joint friendly bridal workout routine? I am getting married and I know a lot of normal bridal workouts involve high impact aspects, so I was considering coming up with my own plan possibly Any suggestions?
hey guys psa regarding hospital bills
donāt just pay it. do not automatically pay the hospital bill when you receive it. call your health insurance provider and POLITELY say, āexcuse me, i just received a bill for $1200 for my hospital visit/ER visit/etc., is that the correct amount iām supposed to pay?ā because hospitals bill you before your health insurance and they willĀ take your money no matter how the amount due may change based on your health insurance looking at it. 90% of the time, if your health insurance is in any way involved in the payment of that bill, you do not have to pay as much as the hospital is billing you for. call your health insurance provider first, and POLITELY request clarification, always remember that the person you are talking to is human and this is just their job, and then you will very likely find out you actually only owe $500.
donāt shout at anyone about it, donāt get mad, just understand that this is The Way Things Are right now and call your health insurance provider before paying the bill your hospital just sent you. thereās a chance the hospital bill might be correct, true, but call your health insurance provider.
THIS IS SUPER IMPORTANT. after my car accident last year the hospital billed me ~$8000. They sent me letters asking me to pay, and I called them back saying my insurance was processing the claim. This is also what I told the collection agency when they kept calling me about the $1000 emergency room fee (billed separately from the hospital fee, mind you). Once everything got straightened out, all I was actually liable for was my $200 emergency copay.
!!!!!!! things my ass didnāt know !!!!!!!!
Yes this is a life lesson my adulting ass didnāt know I needed and Iām out 80 bucks for an anti-nausea pill. ššššš
Also if you do pay before insurance goes through or you canāt reach insurance or whatever, insurance will usually reimburse you the correct amount. They mightĀ āforgetā for a long time because insurance sucks and is usually slow, but even if you have to pay more than you should upfront, you should be able to get a check from insurance if you keep on them about it.
Also, 90% of the time you can get them to schedule you on a payment plan. They know people canāt pay, and rather than just not getting money, they will take $25 - $50 per month instead. Admin J
Today the world lost another beautiful warrior to the realm of autoimmune diseases, Lupus. Her name was Jenny, She was first a girl that came to camp MASH many years ago, then became a counselor for kids just like her, she then pursued the sciences to help offer the slightest bit of relief from the constant fight and even worked at childrenās hospital. I was a camper with her and a volunteer with her. Like many of us she did not let lupus get the better of her days and made the most of every second. She was so young and full of vibrant life despite her lupus. It angers me that these autoimmune diseases in todayās day and age are still claiming lives. But I sincerely thank every single person working for a better tomorrow so we donāt lose any more shining beacons of happiness and hope.
Hi there, I've been doing some research but I cant seem to understand if I have Arthritis or no, recently I noticed when I try to lift something be it a book, bag whatever. My knuckles just start hurting so badly. I do spend a lot of time on my computer and I used to play this game involving a lot of clicking and pen movement. I'm pretty scared, I don't want to have chronic pain for the rest of my life so..
*First a disclaimer: I am not a doctor nor can my advice be treated as a medical diagnosis, so please keep that in mind.
Getting to your question, it actually is a lot simpler than you think. What it sounds like is that you might have some stage of carpal tunnel which is not related to arthritis but caused by repetitive movements of joints.
I personally have carpal tunnel and was diagnosed over winter break because I am an artist and was doing lots of glassblowing and playing games on my phone and writing for senior college classes. Carpal tunnel really isn't too scary to deal with, just mainly annoying. Its symptoms can vary from person to person and so can the severity of carpal tunnel.Ā
My main message is that if you are diligent, carpal tunnel can be overcome! It isn't permanent!
Going to your regular physician or family practice and telling them about these issues with your hands, fingers, and wrists, they will most likely do a quick neurological test ( no scary tools needed, they will do a series of reflex tests and tapping and asking if it makes things feel weird or tingly or you don't feel anything at all, which was my case)
I also had problems where my hand hurt to hold anything and sometimes it would get cold and tingly but when other people held my hand they said it was warm.
Carpal tunnel is actually a very common issue in today's era of technology and touch tech. Some basic wrist and finger stretches in between gaming sessions should help significantly!Ā
But for sure ask to go see your family physician, and if they say you do have carpel tunnel, they will most likely get you wrist splints ( mine are velcro adjustable) to wear at night or during the day that makes your hand into a rested shape to help improve circulation and improve the room of the constricted nerveās in your wrist
I hope this helps and I hope you go to your doctor soon so you can start feeling better!
Go and make interesting mistakes, make amazing mistakes, make glorious and fantastic mistakes. Break rules. Leave the world more interesting for your being here.
Neil Gaiman, Make Good Art (via quoted-books)
Today is one of those days that the slightest movements result in loud popping and cracking noises I swear I'm not the tin man in need of oil, just arthritic is all..,
Today at therapy was really hard. I was sitting here crying, and generally being miserable, when I felt a nudge at my knee. I looked down to see that Zeus, my service dog, was doing his job⦠and brought me a potato. it is very hard to cry with a gift of potato.
Remember this? Iām having a rough time right now. Zeus has a solution.
That would be an empty pill bottle, the *correct* pill bottle, a bottle of embossing powder, and two, TWO potatoes.
Oh my goodness, what a delightful creature.
Dr. Donald Unger conducted a 60-year experiment to prove his mother was wrong about getting arthritis from knuckle cracking. Every day he cracked the knuckles of only his left hand. After 60 years, he had not developed arthritis in his left hand, which was no different from the right. Source
Yes I just love it when my arthritis keeps me up all night
I have been dealing with this pain since I was born, and I will always suffer from it. I have Juvenile Rheumatoid Arthritis (JRA) I take chemotherapy, it makes me ill. I take strong pain meds, and they make me even sicker, but I cannot even describe the immensity of my pain without them. I am...
we are rooting for you!
Let chocolate melt in your mouth and focus on that delightfulness
Focus on wiggling your toes (on the opposite leg if you inject in your legs)
Watch cute youtube videos
Blast a really thrilling or euphoric song (use earbuds to make it more of an intimate and immersive experience)
Count...