WELCOME AND GENERAL INFORMATION, FIRST RHEUMY VISIT, MESSAGE TO "LURKERS AND NEWBIES"

jess53 — Thu, 14 Dec 2006 09:32:23 GMT

WELCOME AND GENERAL INFORMATION, FIRST RHEUMY VISIT, MESSAGE TO 'LURKERS AND NEWBIES'
Posted : 12/9/2006 6:37 AM
PLEASE DO NOT POST MESSAGES OR COMMENTS ON THIS THREAD -START A NEW THREAD TO POST YOUR RESPONSE - THANK YOU
Re:Welcome and General Information 2
Posted : 11/25/2006 1:01 PM
Revised 11/25/06 with no additions, to bring closer to the top.

Message from Grandpa Van:
This is the main post on this thread but it is not the oldest post on the thread so it can be brought to the top if it gets buried very far down the thread. If anyone has suggestions for changes to this thread please send me a PM.

First there is a welcome and some information about the board that might be useful. This is followed by general reference information, mostly with links to where details can be obtained.

Welcome to all newbies. We try to give support and information to all so please feel free to join in and post. You can read more about many of us by clicking on our author name. You also have a Personal Web Page at this site that you can reach by clicking on the blue box at the left. You can post whatever information about yourself you want to share with us. It helps us to know you better and respond better. We welcome all new members and hope you enjoy being here. We look forward to hearing more from you.

There is also a site e-mail that does not go out to the web but is accessible from this site only. Click on "Start Page" in the blue block on the left and you can read your e-mails or send e-mails. Remember to put in a subject or the recipient cannot open the message. You can also send e-mails by clicking on the envelope under the author's name for any post. If you want to keep a copy of the e-mails you send, remember to copy them to your word processing program before sending them.

The board contains "threads" that consist of an initial post and any replies that are added by clicking "reply" under a post. A new thread is started by going to the view that shows all threads and clicking "new thread" at the top of that page. If you are changing a subject it is best to start a new thread.

Another feature is that we sometimes talk about sharing spoons. That is based on a story to explain the trouble with a chronic illness.

Spoon Theory
http://www.butyoudontlooksick.com/spoons.htm

General information about RA
http://www.arc.org.uk/about_arth/booklets/6033/6033.htm
First Visit to Rheumatologist
http://arthritis.about.com/cs/docpad/a/rheumatologist.htm

RA Criteria (Any 4 qualify for positive diagnosis)
1. Morning stiffness, lasting for at least an hour, present daily for at least 6 weeks
2. Arthritis of 3 or more joints, lasting for at least 6 weeks
3. Arthritis of the hand joints, lasting for at least 6 weeks
4. Symmetric arthritis, lasting for at least 6 weeks
5. Rheumatoid nodules
6. Positive rheumatoid factor (blood test)
7. Joint changes on x-ray

Drugs and interactions
http://www.arthritis.org/conditions/DrugGuide/index.asp
http://www.drugdigest.org/DD/Home
http://www.drugs.com/
http://www.mayoclinic.com/health/drug-information/DrugHerbIndex

Lab Tests
http://arthritiscentral.com/html/testslab.htm
http://www.labtestsonline.org

Financial assistance
https://www.pparx.org/Intro.php
https://www.helpingpatients.org/Intro.php
http://www.needymeds.com
http://www.themedicineprogram.com
Http://www.rxassist.org
http://www.medicationfoundation.com/
http://www.nami.org/Content/ContentGroups/Helpline1/Prescription_ Drug_Patient_Assistance_Programs.htm
http://www.qdrug.com/sf/
http://www.freemedicineprogram.com
http://www.rheumatology.org/public/acrast.asp?aud=pat
http://www.joniandfriends.org/helps/financia.shtml

Social Security Disability Benefits (SSDI and SSI programs)
http://www.ssa.gov/d&s1.htm

RA treatments
http://www.hopkins-arthritis.som.jhmi.edu/rheumatoid/rheum_treat.html

Complementary and Alternative Medicine
http://nccam.nih.gov/health/RA/

Food Intolerance
http://www.foodintol.com/food_intolerance/food_intolerance.htm
Antibiotic Therapy - Road Back Foundation
http://www.roadback.org

Aggressive Treatment
http://rheumatology.hss.edu/phys/musings/pagetStandardsRA.asp

Emotional Coping with RA
http://www.hss.edu/Conditions/Rheumatoid-Arthritis/Emotional-Impact-Of-Rheumatic-Disease

Fatigue in RA
http://www.hss.edu/Conditions/Rheumatoid-Arthritis/Fatigue-In-Rheumatoid-Arthritis

Assistive Devices
http://www.webmd.com/content/pages/25/113258.htm?z=1834_00000_2244_HZ_06
www.beabletodo.com

Stress (Good, but technical)
http://rheumatology.oxfordjournals.org/cgi/content/full/38/11/1050

First rheumy appt, how to prepare
Message compiled by JeriBeriNanaBana Posted : 12/7/2006 7:59 PM
From arthritis.about.com:

First Visit To The Rheumatologist

A rheumatologist is a medical doctor who specializes in arthritis and related diseases. Most often, a patient is referred to a rheumatologist by their primary care physician after presenting symptoms of arthritis. When preparing for the first appointment with the rheumatologist, there are primarily three things for the patient to consider:

*What should the patient take to the first appointment?
*What can the patient expect?
*What questions should the patient be prepared to ask?

What should you take?

Take your insurance cards and a photo I.D. so that the office personnel can begin to build a medical file. Be prepared to fill out a medical history. Bring along information about medications you take including the name of the drug, dosage, and schedule. Know the dates of pertinent visits to other doctors related to your current situation (i.e. orthopedic surgeons, internal medicine doctors). Be able to describe your current symptoms and the date of onset. If you have prior x-rays which are related, acquire the x-rays and/or reports so the information can be included. Present information about past surgeries (procedures, dates, and name of surgeons).

What can you expect?

You will be taken to an examining room by a nurse. The nurse will take your vital signs and ask you to briefly explain your symptoms and why you have been referred to the rheumatologist. After making a few notes, the nurse will tell the rheumatologist you are ready for the consultation/ examination. The rheumatologist will again ask you to explain your symptoms, in more detail, while examining you. Based on your answers and the findings during the examination, the rheumatologist will order more diagnostic tests.

According to The Collaborative Arthritis Research & Education Services Program, expect the rheumatologist to ask:

*Where and when does it hurt?
*When did you begin to feel the pain?
*Is the pain dull or sharp?
*How long does the pain typically last?
*Do you have swelling or redness of any joints?
*Do your symptoms affect your ability to perform any daily tasks?
*Have you injured the affected joint(s), been in an accident, or recently overused the joint(s)?
*Do any family members have the same or similar problem?
*During the physical exam, the rheumatologist will look for visible evidence of swelling, redness, inflammation, tenderness, rash, nodules, or deformity. The range-of-motion of your joints will also be assessed.

The combination of your medical history, physical examination, and diagnostic test results will help the rheumatologist decide whether or not you have arthritis and what type of arthritis you have. There are over 100 types of arthritis.

What questions should you ask?

Following the examination and interview by the rheumatologist, you will have the opportunity to ask questions. Have your questions pre-planned as much as possible and written down so you will be less likely to forget. Preparedness will afford you the best chance of leaving your initial visit with the rheumatologist armed with a plan. Consider asking your rheumatologist the following questions:

*Do I have arthritis? What type of arthritis do you suspect?
*What treatment will be tried initially?
*What is the action of each medication prescribed? (i.e. Is it a painkiller? Is it an anti-inflammatory drug?)
*When should I expect to notice an improvement?
*If this treatment plan does not work, what would be my next option?
*How will you monitor my progress or the possibility of adverse effects? *Will I require routine blood tests?
*What other avenues should I consider for better management of my arthritis? Regular exercise? Physical therapy? Occupational therapy? Weight management?

Early diagnosis and proper management of arthritis is imperative. A good relationship with your rheumatologist is an integral part of the process. A successful initial consultation can set you in a positive direction.

Re:
Posted : 12/8/2006 2:57 PM
Message from Susan on Whidbey:

Posted : 9/4/2006 12:21 PM
You've found a very active board and should probably start by reading Grandpavan's introduction which we try to keep near the top at all times.

I'm writing because it seems appropriate, with so many joining our ranks, to talk about the emotional upheaval you're now experiencing.

You should know that most of us have gone through the process. First you're just peeking at the posts because you KNOW you probably don't have RA, but there's that nagging fear.

Then, as more symptoms seem to fall into place, you decide to find out for sure because you know SOMETHING is wrong.

Then there is, for many, an interminable wait as symptoms get worse but the blood tests seem normal. And NO you're not a hypochondriac. Take that one off your list right now.

Then, though it may take a second opinion or three or four, you have the diagnosis. You'll feel a smidgeon of relief, but now you've opened up a whole new can of worms.

And right here, when you're really feeling awful because none of the medications kick in for an eternity, you need to look carefully at the rheumatologist and decide whether this is the person with whom you want to be sharing the battle against the rheumatoid monster. This is your first really important decision. You'll read here of the frustration and disappointment that comes of a poor match between patient and doctor. Making the most of your health depends on being able to stay upbeat- and that ain't happening with the wrong combination, no matter how diplomaed he/she is.

But all the while, you'll be going through the classic stages of grief. The sooner you work through denial, anger, guilt, the better. Bottling that stuff up 'for the sake of the family' only holds you back. Go off by yourself, if you must, to scream and cry. Or come here to vent. But get that bad stuff out so you can devote your energy to taking up every sword you can find again the RA monster.

Please know that you are NOT alone. Chances are there is someone here who has already experienced the strangest symptom you can think of. It would be SO much easier if there were a predictable pathway of symptoms and outcomes.

There's not. You'll have to do battle as your body dictates. In that sense, it's a lonely struggle. But this community is united in sharing support, and from that you will gain the strength to keep taming the beast within.

Information about RA? There's loads of it here. Hints, tricks, and inside jokes to boot. But underneath all that is sharing a lifeline with all who join us. Please do and help make us stronger by your participation. Susan-on-Whidbey
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WELCOME AND GENERAL INFORMATION, FIRST RHEUMY VISIT, MESSAGE TO "LURKERS AND NEWBIES"