New Rheum Doctor: Who Did I Piss Off in a Past Life, and Why Haven’t I Won the Lottery?

Saw another rheumatologist this morning.

The good:

  • Very thorough
  • Excellent staff
  • Spent an hour and 20 minutes with me

The not so good:

  • He’s never seen my mutation before (obviously. If Mayo Clinic has never seen it before, why would a rural Thomasville doctor?)
  • There’s evidence of both autoimmune and genetic diseases (no shit)
  • There is evidence of both Lupus and Still’s Disease (no shit)
  • Discussed Mixed Connective Tissue Disease
  • The drug he, like Dr. S, thinks will be most effective is the one damn drug I can’t afford: Kineret. The one that costs more than my rent.
  • No remission for the genetic disease. 
Can we just pause for a sec at the thought of living the next 50+ years without even the distant hope of remission? Yeah. Not a nice thought. I’d love to verify that fact, but there are literally 2 online blogs for this mutation. No organization for the disease, nothing. 
I’m pretty good at being the 1/million and defying all odds, so someone please tell me why I haven’t won the lottery? I mean, they could at least pay me for being a professional patient and statistical anomaly extraordinaire
. 

I still think a research hospital/affiliation will be beneficial, so I’m going to check out Shands. Perhaps the NIH programs for enigmas like myself.

So that’s that and I don’t have the brain power to elaborate at the moment.

For now, I am going to take a large dose of pain medication, sleep, and fight off this looming existential crisis.

What’s in a Name? The Consequences of Labeling RA as “Arthritis”


Rheumatoid Arthritis is not what the rest of society considers “Arthritis.” I put this word in quotation marks because I find that nearly all of the people I interact with associate arthritis with Osteoarthritis— a condition that occurs with wear and tear of the joints with age. Yes, this is the elderly arthritis the commercials and brochures advertise, the kind your elderly relatives likely have some form, but no, this is not an autoimmune disease.



So when you tell someone you have “Arthritis” when you really have some form of Autoimmune Arthritis, you are not doing the disease or those suffering justice. There are so many people, so many children, with autoimmune arthritis who are desperate for better treatments and a cure, but may not live to see one because our society does not realize the epidemic of autoimmune arthritis. You don’t promote the necessary awareness or justification autoimmune arthritis so desperately needs, and so you do every autoimmune arthritis sufferer a disservice. You do a disservice and injustice to all of the Still’s Disease and AA (autoimmune arthritis) sufferers that have died as a result of their disease (yes, you can die from these disease should you have organ involvement or compression of certain vertebrae).



Please, politely correct people when they do not correctly name your disease. Politely correct people who claim that their Osteoarthritis is just like yours. Not to prove them wrong, not to compare who suffers more, but to separate the two very different conditions from each other and educate our society. We’ll never reach a cure if we don’t make it know that we need one.



What’s in a name? Power. The power to create change, end suffering, and be a patient advocate.Whether you know someone suffering or you are afflicted by the disease, never forget to be a patient advocate.

Weekly Link Roundup 09/14/2011

    1. Advocacy For Patients — Amazing amazing resource! AFP, created by a lawyer suffering from multiple chronic conditions, offers free advice and advocacy services to those suffering from chronic illnesses, focusing on everything from health insurance to social security matters to discrimination in the work place. I am linking to AFP’s blogspot, where you will find a link to their .org site. Even if you do not need this resource now, it is a link to tuck away just in case. Such a valuable wealth of information!

    1. Psychology of Chronic Illness — Psychologist Nicoletta Skoufalos, Ph.D.,  discusses various facets of living with a chronic illness, written with the intent to serve as “thought provoking discussions.” Very interesting link for those of you interested or studying psychology or more specifically, the psychology of chronic illness/living and coping with a chronic illness.

    1. Lupus Family — Created by a devoted husband whose wife suffers from SLE. Lupus Family was designed to serve as a “safe haven” of sorts; a “community of support for lupus patients and their friends and families” while providing a “safe haven.” A link to send to a family member or friend who is struggling to be a care taker or on looker of your disease, or a great resource for those suffering to get an idea of what it is like to be in the opposite role— a role that is equally helpless. Geared towards Lupus, but adaptable to similar conditions.



  1. International Still’s Disease Foundation — The only organization I was able to come across that advocates for Still’s Disease. ISDF is a nonprofit organization that provides nearly all the information there is to be had related to Still’s Disease, from research to lab results, to support resources and the latest research. Definitely a site to keep bookmarked if you have Still’s or to send to family/friends.


*Send me your favourite blogs you think should be advertised as blog of the week :) Not only do you get to show off your favourite blogs, but I will have more to look at and stay busy with after surgery!