Day 4 - #HAWMC WEGO Health Writer's Blog Challenge - for the Month of November 2016

Day 4 - #HAWMC - A Letter to "Myself" at the time I was diagnosed knowing now what I did not know then....

 

 

Dear Rhia (self),


You had already "figured out" that something must be wrong with your immune system. You had been through enough doctors, tests, had so many symptoms resembling Lupus, RA, and several others like Sjogren's and Raynaud's that you really did not know much about.

When the 1st round of labs came back, from my own PCP (who diagnosed me at first), he knew that you needed to see a specialist. Although you come to find out your PCP has been more beneficial with the Lupus and Lupus Flares, that the Rheumatologist, who concentrates more on the RA than the other Autoimmune diseases.

You now can recall the first Rheumatologist, even though he was quite elderly, had just came back to work after a stroke himself, but his diagnosis, just after a thorough examination gave proof enough to show not only did I show signs of Lupus, RA, Raynaud's, Sjogren's, but had findings of probable MCTD, and that was almost more frightening than the Lupus and the others.

My moments that now I wished I had realized that ALL RHEUMY"S are NOT THE SAME, is something I wished I knew when I was first diagnosed. That caused me going through at least 7 specialists, each of which had a different "edge" and look on my diseases, or lack thereof. Most of them were only "blood work" driven. Not anything to do with all of the symptoms I had for years and years.

I could have saved myself a great deal of stress, worry, and getting nowhere, had I known to search for the "proper" Rheumatologist from the beginning. I've also come to find out my doctors here at my local Urgent Care know more about my conditions, than my Rheumy's for the most part. Plus if I am in a severe flare, there is no way I could get into my Rheumy in Dallas quickly. With those at Urgent Care I can be in and out, have the medications I need, and be hopefully on the road to curving the flare, without having to drive 40 miles each way, and maybe not getting what I need.


When I found out that I had 2 or 3 other 1st cousins, all on my Mom's side with RA, then we each began to piece together that this could very well be "genetic".

I wished I had known more about Sjogren's, for one. Maybe had one doctor done more about the Sjogrnen's I would not have lost ALL OF MY TEETH WITHIN A COUPLE OF MONTHS, requiring severe pain, and many dentists visits, to have all of them pulled that were left, and then try to deal with dentures, and the expense of over 15,000.00! Now I am still left with "pretty straight" teeth, BUT "fake" in nature.

So, I also wished I had more knowledge of how I could have been a volunteer and advocate before I myself had been diagnosed. I think had I been involved in some ways with the organizations who help us I may have felt "better" about myself, and not so ashamed of what these illnesses can do to us, our minds, bodies and souls... plus relationships, friendships, and the way people "see" us after we are ill.


#HAWMC

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The Arthritis Foundation Being an Ambassador & Just how incredible of a Foundation it is.

I've talked a great deal here on my blog, as well as on Facebook, in emails to friends and family, along with spreading the word here in my hometown, and even in our local newspaper, I've had a couple of articles published.

I know at times when we think "non-profit", charity organization, or other ways they are often referred to, it gives the idea that they "collect money through donations" and use those to help others, possibly for some research, and so forth.

Actually, that is not all that the Arthritis Foundation does at all. They are an incredible Foundation, created by some fantastic people, that have changed the face of arthritis throughout the world. They bring "patients" and "caretakers", even our youngest of patients the kids with Juvenile Rheumatoid Arthritis, and have them involved in the annual "Summit on the Hill" each March on Capitol Hill in D.C. in order to have more funds, more awareness, and more support through Caucus' and those Representatives that can help to make research, awareness, and also others types of assistance available for patients, families and caretakers.

They are a true leader when it comes to "arthritis". Whether it be Rheumatoid Arthritis, Osteoarthritis, and Juvenile RA, and/or the complications of those to a standstill. They feel that anyone that has to suffer from these horrid diseases, that can't get the medications and care they need in order to have a normal life, as being totally not acceptable in any shape or form.

They are warriors in the battle of these horrid illnesses and diseases. They have made an impact through not only the Federal Levels of government, but also in our States legislation to chance things so that "we" as patients can have affordable medications, access to the proper care, making sure that "generic" medications are virtually the same as the original name brands.

Not only do they hold the annual Summit each year and see each and every Senator/staff and/or Representatives, they have also changed things that were very wrong with insurance coverage for people with these illnesses, and helped to stop the "insurance" companies from telling the doctors what or what they cannot give to their own patients.

They have also along with the Department of Defense started a program years back, where our women and men that come out of duty home, all too often to suffer from some type of arthritis and/or autoimmune illness, have a "face and name" in that respect. There are studies about why so often a "well" soldier comes in from a stent of duty, only to realize they have been "taken down" by some type of arthritic ailment. The chances of that grows higher each year, with troops coming home to be in much more pain and suffering than to be in the wars.

The "AF" Arthritis Foundation provides dozens of opportunities for those who wish to become a "voice" by being able to become an Ambassador, help with other volunteer efforts, write letters and emails to your representatives, attend different events, such as the "Jingle Bell Run" and the latest which is the annual "Walk for Arthritis".

Over and above all of those, they also have events for those kids with Juvenile RA. They have week long camps, are also there at times to speak to the Congress, and help in some many ways when it comes to fighting for a cure for these diseases.

So, whether you are able to give a few hours of your time to help out, send out emails, hand out information to others in your community, do a local fundraiser, get the word out like this through blog postings, social media, your local government, newspapers,attend a "Town Hall Meeting", or however you can give of your time, all of those things and so much more are crucial to "solve the mysteries" of these life altering diseases.

Please go to:

http://www.arthritis.org/

                      and be a "Champion of YES!"

I will post more about my own "Ambassador" role, and in fact I was made a "Platinum Ambassador for 2014! Which is another one of those incredible honors bestowed on those that give of themselves and of their time to make a difference for "every one"!

 Below explains more in detail of just how crucial it is to be a "Champion of Yes!

 

Champion of Yes.

Our Voice Resonates Loud and Clear
All-In
We are all driven by a passion and commitment to work that goes beyond the call of duty.
Expert
We continually strengthen our longstanding track record of leadership, and apply our authority to initiatives that are escalating technological, medical and scientific advancements every day.
Bold
We are tenaciously and aggressively attacking arthritis and its effects, with a loud voice and loyal persistence that will never back down.
Ever Present
We are here for the long haul —when, where and how people need us — maintaining relevance in every field and facet that affects arthritis.
Brave
Together, in the face of darkness, we possess an optimistic outlook and winning spirit that courageously leads us.

arthritis.org

Arthritis is a thief. People with arthritis know this full well. It steals everyday joys and long- term dreams. It isolates and ostracizes.
It is painful. It induces a spirit of No.
As people close to the Arthritis Foundation, we know that it doesn’t have to be this way. We are in a unique place of authority and action, with the purpose of finding a cure, but also fighting for the everyday victories.
We Exist to Conquer Arthritis
The Arthritis Foundation is focused on finding a cure and championing the fight against arthritis with life-changing information, advocacy, science and community.
Plan for Yes
We chart the course for the arthritis community, helping families develop personalized plans for saying Yes — day after day.