Friday, September 23, 2011

Kissing Cousins of RA

A very dear friend of mine called me the other day to say that her sister was recently diagnosed with hepatitis C.  Immediately I thought of a blood transfusion as the cause. Boy, did I have something to learn. She in fact was diagnosed with autoimmune hepatitis. What in the world is this?

And that was the inspiration for this post. The longer I am blogging, the more I learn and the more I have to learn about what seems like to me, the many autoimmune illnesses that are kissing cousins of ra.  Yes, I know, what a lovely thought.  More things to possibly have to worry about.  But I am putting this information out there because so many of us have so many symptoms that just don't quite fit under that tidy one diagnoses we were given.

So here goes! Here are some of the kissing cousins of ra...

Medline Plus gives us the following examples of (kissing cousins of ra) autoimmune diseases:

And if that isn't enough to digest, here are a few more that I recently found out about!
I have no doubt I have missed a few of our cousins out there. So if you know of any others, ask them to join this dysfunctional family through a comment.



Sunday, September 18, 2011

Fall Festival of Blogs

It's that time of year again! The pumpkin spice candle is lit, the leaves have begun to change color and I have decided to have another blog party!

So come on in, browse awhile on the wonderful new blogs I have grown to enjoy.  Perhaps you can leave a comment or two so they know you have visited.

I hope you enjoy them as much as I do...
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Does It Get Any Easier?

 This morning started off like every other morning. Just getting out of bed and coming downstairs did me in. The pain and stiffness upon waking on this chilly morning makes it clear that I am going to need extra time to get through morning routines and get kids ready and off to school. The problem is that there is no extra time, I spent that lying in bed waiting for my morning medication to kick in. Gentle stretching to try to loosen up joints was to no avail this morning. My jaw ached like never before but I guess I shouldn't be surprised it too is a joint. It is going to be one of those days that is clear. Ready or not I had to get up...http://myinsidevoicespeakingout.blogspot.com
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A little different type of blog post today.  The lighting is bad I know.  I can't tell my right from my left.  Hey I'm learning!   Here it is. You can click on the right I think and watch it in YouTube or just watch it in blogger. I hope you like it!...raawareness.blogspot.com


Notes From A Spoonie Chick: My Thirty Things...http://spooniechic.blogspot.com
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Appalachian Trail


Woke this morning with all systems go. Back to baseline, not perfect, but good enough.
I have thought about a thru hike on the Appalachian Trail since my older brother and father went with their scout troop when I was in junior high. I have two shelves of books on backpacking and the Appalachian Trail. It’s one of those dreams that has remained a constant. I always believed someday I would do a thru hike...http://wovensongs.wordpress.com
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Care for the caregivers...

On the eve of the close of National Invisible Chronic Illness Week, I'd like to focus instead on caregivers. Whether you are a spouse, significant other, adult child or parent caring for a chronically ill person, your partner's disease will take a toll on you too. Relationships can be difficult when both partners are healthy. A chronic illness can make a relationship much more stressful. We know the person who is ill needs support, but caregivers need support too. Extra burdens, physical and psychological, are shared by both partners. And they are often different burdens even though they share the same source. This is for the caregivers....http://makethislookawesome.blogspot.com 

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FIGHTING DEPRESSION AND LIVING WITH ARTHRITIS

It’s my opinion that arthritis is one of the most difficult diseases to live with.  I am not suggesting other diseases are a walk in the park, but arthritis has with it four distinct factors that make it so difficult. 
 These include the extended period of the disease, the limitations of mobility, the continuous rollercoaster in fluctuations of how the body feels and the constant pain.  It is easy to see how one living with arthritis can easily become and sink into depression...http://www.livingwitharthritistoday.com
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Thursday, September 15, 2011

Will Dr. Watson get it right? Taking the prejudice out of diagnosing invisible chronic illness

                                                                         photo: News: Auto Express News

I was so excited when i got an alert on my blog about Dr. Watson. He'll get it right! He won't be prejudiced against the hundreds of patients suffering out there and who have been run over by the medical profession and told, "It is in your head."

I jumped up and did my pre ra happy dance which is kinda like the moon walk but with arms flapping to and fro (not really but doing it in my head is my modified way to celebrate now). Is this it? Is this the answer to getting treatment for those patients with autoimmune disorders that put them in terrible pain and with severe fatigue? Can they finally get a diagnoses rather then condemnation to suffer on.

Will we for once have a non prejudiced observing mind that will take in the facts, digest them through millions of nano bytes and graciously and without prejudice give out a diagnoses? I surely hope so! 

This week is National Chronic Illness Awareness Week. I want to shout it from the rooftops that we are here, we are chronically ill, we need for the medical community to rally for us, we need researches to help us find cures. We need for those that are still suffering and yet diagnosed to be put on the road to treatment, to join us as part of our unity. For these patients I worry the most. They are still left out in the dark. They are still alone, frightened and often made to feel inadequate and at fault for their illnesses. This is wrong. This is how I hope Dr. Watson can help.

Dr. Watson was featured on Jeopardy. He won!  Medical News Today wrote an article entitled: "Doctor" Watson to Inform Medical Decisions: Not Sherlock's Assistant, But A Computer. It is ironic that I who always believed that finding a doctor with compassion and empathy is the key to coping with chronic illness would support a computerized doctor. 

Having a doctor that will listen and work with you during your long journey is critical in being an empowered patient.   But unfortunately I also realize that so many of us can't find those compassionate doctors that will listen patiently, take notes, and search the archives of medical knowledge to help diagnose those perplexing symptoms. Dr. Watson will! He may not have the compassionate component of human interaction but for those patients that have been left in the dark for weeks, months and years….they won't care. They will be happy to just have a name, a diagnoses to help validate their suffering, their right of passage into the world of invisible chronic illness.  And more importantly, a passage into the world of treatment. Perhaps in this case, human prejudice is best left out of it.

And I do believe that is why so many are left undiagnosed and still suffer. We are humans after all. And that includes doctors, nurses and the mass of the medical community at large. We are what we learn. We are what we experience. And that is the very essence of the breeding grounds for prejudice.  The very causes for why so many doctors default to the it is in your head, you are to young to have these problems, you are working to hard,  you are depressed, you need to take off some weight, you need to learn to deal with it…the prejudices go on and on.

I never in a million years would have believed that I could have so much hope and faith in a non human being.  In a computer program that will diagnose patients objectively and without prejudice. Welcome home Dr. Watson! I am so looking forward to you heading up my team!

What about you? Would you be willing to be diagnosed by a computer?