Welcome to the MEETING MINUTES for November 10th, 2018 ANNIVERSARY EDITION!
Happy 9th Anniversary to all the members past and present. Special “Shout Out” to Diana, our very first member!!!
And HAPPY VETERAN'S DAY to all who have served, or held down the homefront while their loved one was serving. We greatly appreciate your service! Special Shout Out to my favorite Vet, my husband Pat! (How cute is Marlie in her Army hat?)
Attendance: (9) Joanne, Patrick, Pat H., Jeff, Jenny, Sharon, Addie, Kathleen, Anna
Welcome New Member Kathleen!
Our website had 720 Unique visitors in October! That means we reached 720 different people who needed our support! The numbers continue to grow month to month! It wasn't that long ago I was super excited about reaching 100! Keeping the website running is the best way for people to find us and get the assistance they need. So FAR IN 2018 ALONE we have HELPED 4,657 unique visitors!
Donations collected at meeting: $20
Average Monthly Cost of Operations: $100
Deficit for the month -$80
Ice Breaker: #1 Since it is November, we always do “Name 3 things you are thankful for this year?” Let me take this moment to let you all know that I am thankful for each and every one of you! For you have all supported me in the journey of my illness, as well as in keeping the group going! Thank you all!
Ice Breaker #2, just for fun, we answered “If you had a time machine that you could only use once, were would you go, past or future and why?”
OPEN FORUM
One member shared an article that Pittsburgh opened a whole place dedicated to Autoimmune Diseases. Here is a link: https://www.upmc.com/services/rheumatology/services
He shares that Summit Hospital Overlook has an autoimmune disease focused department in the Medical Arts Center: Institute for Rheumatic and Autoimmune Diseases with offices located also in Bridgewater, Martinsville, Clark, West Orange. For more info click this link: https://www.atlantichealth.org/conditions-treatments/rheumatic-autoimmune-diseases.html
Discussion revolving around benefits some members gain from making dietary changes.
One-member states dietary changes and quality supplements are a big help to him, as well as quality sleep/rest. All group members nod in agreement about sleep being HUGE in feeling better.
One member shares that if you get infections very frequently, you may want to ask for the IGG Subclass breakdown of blood tests. He had pneumonia and the flu at the same time which sparked his doctor to order the IGG Subclass and it found he was deficient in subclass 3! Now he gets monthly infusion of IGG (which is a big part of your immune system) and he has not gotten so sick as to be hospitalized since he started the treatments. This member cautions that it is possible to have "Normal" TOTAL IGG levels and still have a subclass deficiency. Here is more info on this very interesting health challenge: https://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/igg-subclass-deficiency/
One member discusses Vitamin D levels as being very important. It is involved in thousands of processes throughout the body. Ask your doctor how many i.u. you should be supplementing with. Several members swear that they have lower pain levels once getting on Vit. D. supplement.
One member puts the question to the group, “Why don’t doctors talk more to their patients about research that is going on?” His doctor told him that it could be detrimental for a patient’s mental health since research is usually in the infancy stages of any form of medication or treatment. But we discussed amongst ourselves that it can provide much needed hope. How do you feel about it?
One member had her diagnosis changed recently from Rheumatoid Arthritis (RA) to Fibromyalgia (fibro). Other members had similar experience wherein they were told one diagnosis first and then changed it down the line. (We hope this is happening less as doctors are getting more adept at treating autoimmune and testing earlier). I found this thought provolking article on how/why we can be misdiagnosed: https://info.dralexrinehart.com/articles/functional-testing/autoimmune-disease-antibody-testing
One member shares great article on the AARDA.ORG website called “Closing the Care Gap in Autoimmune Disease”. Click this link and then scroll down to about the 5th or 6th article on the right and click "read more". https://www.aarda.org/closing-care-gap-autoimmune-disease/
One member loves their doctor: Dr. Elliot Rosenstein at Overlook Hospital for Fibromyalgia (fibro) Stating she finds him to be knowledgeable and not condescending.
One member ponders whether one can simply “outgrow” their doctor… that perhaps you come to the end of the road with one and starting with another can bring fresh perspective. Maybe it’s not a bad idea to get a “new set of eyes” on the problem.
One member is having surgery on her hand. We wish her speedy recovery! Keeping you in our thoughts my friend!
One member describes a Fibro-Flare pain as “flu-like” feeling and that there were times she literally could not tolerate clothes on her skin because of the pain.
One member has recently begun Humira injections which she tells us can take up to 16 weeks to get to full effectiveness. Wishing you well on this journey!
One member just got diagnosed with narcolepsy and is now on CPAP - wishing you good luck and great sleep!
One member shares that his doctor cautions on making a diagnosis because some of the markers they look for are going to be “off” due to the body’s inflammation/immune response and may cause a misinterpretation of those lab results.
Member chimes in stating their doctor’s philosophy is to treat the signs and symptoms and not the numbers.
One member wants to know if anyone else experiences the sensation of having low blood sugar after taking Motrin (Ibuprophen). I found this in support of what this member experiences! https://www.ehealthme.com/ds/ibuprofen/low-blood-sugar/
One member shares that there is a Sjogren’s like illness called SICCA which is negative on the lab test this article compares Sjogrens vs. SICCA. Click this link: http://info.sjogrens.org/conquering-sjogrens/bid/353580/Sjogren-s-Vs-Sicca-Syndrome
One member is getting good results from a migraine “inhaler”. X-Sail
**** NEXT MEETING: Saturday, December 8th, 2018
It will be our Holiday Party!!!
Everyone please bring a dish to share (lets try to have some options that are gluten free, dairy free) also please note we do have the following food allergies
STRAWBERRY
NUTS
SESAME
We will do our annual Gift Grab. Participation is optional, if you would like to participate, bring a gift in the $10-$15 range suitable for man or woman, wrapped up, and you will get to SWAP it for someone else’s gift! We will decide that day if we want to do it “Yankee Swap” style.
