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A Letter to Patients With Chronic Disease

A Letter to Patients with Chronic Disease by primary care physician, Dr. Rob

An amazing letter that helped me understand where my rheumatologist is coming from and how we can be better patients to help our doctors help us.

“You scare doctors […] Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease […] you possess deep understanding of something that many doctors don’t possess.”

A must-read for my followers. I’m just posting the link for now (Read it!), but am dissecting it and writing up a commentary about the doctor-patient relationship with the chronically ill.
 

    • #Chronic Illness
    • #Chronic Pain
    • #Rheumatoid Arthritis
    • #Health
    • #medicine
    • #Medical
    • #Doctor
    • #Rheumatoid Arthritis
    • #MS
  • 1 year ago
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Have I Spoken Too Loudly? Being a Survivor & Being the Change for Autoimmune Arthritis

                                          
Terminal illness vs. chronic illness; a lack of publicity. Refuse to be a part of the forgotten majority.

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    • #Arthritis
    • #Autoimmune
    • #Autoimmune Arthritis
    • #Chronic illness
    • #Chronic pain
    • #Dear followers
    • #Health
    • #JIA
    • #JRA
    • #Lupus
    • #Medical
    • #Medicine
    • #RA
    • #Rheumatoid Arthritis
    • #SLE
    • #Still's Disease
    • #MCTD
    • #UCTD
    • #DLE
    • #Invisible illness
    • #Disability
    • #AS
    • #Ankylosing Spondylitis
    • #Awareness
    • #Advocacy
  • 1 year ago
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The latest campaign from The International Autoimmune Arthritis Movement, for those of you who are interested in making the video to explain the difference between AA or OA, or JA in this campaign. This project is an extremely important one and another way we can stop the confusion and misonceptions our society has about these diseases.
How can you help? PARTICIPATE. It takes only a minute to make a quick webcam video.

Make a video for a friend, for one of over 300,000 children in the U.S alone suffering, for me, for yourself. It’s called activisim for a reason— it requires you to act.
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The latest campaign from The International Autoimmune Arthritis Movement, for those of you who are interested in making the video to explain the difference between AA or OA, or JA in this campaign. This project is an extremely important one and another way we can stop the confusion and misonceptions our society has about these diseases.

How can you help? PARTICIPATE. It takes only a minute to make a quick webcam video.

Make a video for a friend, for one of over 300,000 children in the U.S alone suffering, for me, for yourself. It’s called activisim for a reason— it requires you to act.

    • #IAAM
    • #International Autoimmune Arthritis Movement
    • #Arthritis
    • #JA
    • #JRA
    • #JIA
    • #Rheumatoid Arthritis
    • #Autoimmune
    • #Autoimmune Arthritis
    • #Health
    • #Medicine
    • #Medical
  • 1 year ago
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It’s Time to Speak Up: 13 Reasons Why This is Not a Joke

It’s truly frustrating when chronic autoimmune diseases, especially Autoimmune Arthritis, are just kind of pushed aside. Terminal illness blog on tumblr? 10,000+ followers. Chronic illness blog? Why?

“…”Arthritis” Blog? Uh—why? What does Chronic Curve even mean?” is the reaction I get a lot, even from friends.


Why, you ask? This is why:

  • There are more than just two kinds of arthritis. There are over 100 and they are all different.

  • Autoimmune arthritis is not an elderly disease. It is not Osteoarthritis. It is not caused by age or wear and tear of the joints


  • Autoimmune arthritis means that one’s immune system has outdone itself by attacking the joints and various organs and tissues by mistake, thinking they are foreign pathogens and invaders. It is doing its normal job against the wrong area.


  • Autoimmune Arthritis is not just a take an aleve and move on with your day-kind of ordeal. Many patients require long-term, low dose (comparatively speaking) chemotherapy medications via self injection. They lose hair and suffer the same symptoms the same way cancer patients do…only their disease is very rarely advertised appropriately or cared for.


  • Many children, as many as 300,000 in the US alone, are affected by a type of arthritis.


  • AA can cause blindness, lung disease, heart disease, chronic fevers, fatigue, rash, “secondary brain fog,” joint damage, organ damage, vasculitis, debilitating pain, swelling, and death.


  • Autoimmune Arthritis patients have higher mortality rates: “Median life expectancy was shortened an average of 7 years for men and 3 years for women compared to control populations. In more than 5000 patients with rheumatoid arthritis from four centers, the mortality rate was two times greater than in the control population…” (Johns Hopkins)


  • Disability is common. According to Johns Hopkins, “patients with rheumatoid arthritis with 60% being unable to work 10 years after the onset of their disease.”



  • A flare can occur at any time without warning, or one may flare consistently while symptoms change, but never go away. No patient is the same, but all patients suffer.




  • Many AA patients are seronegative (false-negative blood results) and are misdiagnosed and untreated for years. Many resort to suicide and the physical damage due to no treatment cannot be undone  by the time a diagnosis is reached.


  • AA can also be a secondary condition to Lupus and various other conditions.



  • Per person, research allots to 25$ PER PERSON in Autoimmune Arthritis funding. Go ahead and do some research to find out how that compares to other diseases.



  • There is no cure.

Now can you tell me these diseases do not deserve apporiate advertising, funding, and education?

Now can you tell me why my disease is not important?

Now can you tell me why my blog is not important?

Now can you tell me chronic illness does not come with its own terminal life sentence?  The only thing certain about these diseases is that there is no certainty, no predictability, no end, and no cure.

I am important
My health is important
This disease is important
And as my disease is invisible and misunderstood to nearly all that I know,
It is my responsibility to help bring it to light.

I hope you make it yours too. Please reblog,

    • #Health
    • #Medicine
    • #medical
    • #Arthritis
    • #Autoimmune Arthritis
    • #Lupus
    • #SLE
    • #Chronic illness
    • #Chronic pain
    • #Autoimmune
  • 1 year ago
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The “Difficult” Patient: It’s Time to Replace the D-Word

thepremedpatient:

I hear the phrase a lot from doctors, physician bloggers, surgeons, nurses, fellow patients and loved ones; being labeled the “difficult patient” because of a chronic or complicated illness.

I’ve heard “the difficult patient” referred to as a lot of things: the patient with a nasty attitude; the patient who refuses treatment or refuses to take care of their body; the patient with a complicated family situation; the patient with a terminal/complicated disease pattern; the patient whose disease remains a mystery; the patient who can’t give a straight answer; the patient who has a chronic illness.

Most of those definitions I understand. But it’s the phrase I have an issue with when it comes to being the chronically ill patient.

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My latest article on my sister-blog, The Pre-Med Patient. Read & Follow if you don’t already. It’s definitely relevant to all of you :)

    • #Health
    • #Chronic Illness
    • #Chronic Pain
    • #Medicine
    • #Medical
    • #Doctors
    • #Science-related
    • #Autoimmune
  • 1 year ago > thepremedpatient
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Avatar A 21 year old student and ePatient advocate working to help others navigate through life with chronic pain, chronic disease, and disability. Sharing resources, advice, helping others find a voice and become empowered patient advocates. Raising awareness for Autoimmune Arthritis and Autoinflamatory diseases.

Read more about Chronic Curve here.

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