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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.


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CNN Stigmatizses Chronic Pain Patients in National Pain Report by Paul Gileno

FOR ALL of us that are Chronic Pain Patients, Caretakers, family members of those who suffer from so many different types of Chronic Pain, many of us daily, and without our medications, along with other ways we "fight" against this epidemic, seeing that the CDC and the government is NOT on our side is frightening and down right wrong!

Those that do not understand chronic pain, from so many different types of illnesses, have no clue what happens to our "daily quality" of life. We would not be able to function normally, from taking care of our families, children, working, doing our shopping, going out to eat on a Friday evening, or even sitting with the family at home enjoying a movie. Chronic Pain without medications and treatments put each of us in a place of "NO life"... we would be sofa or bed ridden, we would not be able to cook, clean, do our yard work, shop, take our children to school or participate in the many, many activities that people that do not know what this type of nagging, gnawing, type of horrendous pain is like.

Many of us understand "acute" pain, from a broken bone, broken rib, from surgery, from an accident, which after a few days or week or so, that pain is gone once that heals. But, those of us with Diabetic Neuropathy, severe spinal pain and sciatic nerve pain, pain from the many Autoimmune Illnesses such as RA, Lupus, Sjogren's, Autoimmune arthritic types of pain, osteoarthritis, neck pain, pain from so many different types of problems that does NOT go away, that it stays with us throughout the rest of our lives... THAT IS THE SOMETIMES INTRACTABLE pain I am speaking of.

It always floors me when someone says, "You don't look ill?" Well, I, like most, do not like to go out in public looking like "death warmed over" as the saying goes. We "try" to put on our "best face"... to try and move through the pain, so we can appear to be "normal, even though our lives, our physical, mental and emotional states are far from normal. There is cancer pain, which in all ways is chronic, when it becomes "incurable". There are problems with bladders that can cause horrid pain, and it also an autoimmune illness. Up until I was "diagnosed" formally with RA, Lupus, Sjogren's, Raynaud's, and so forth, I had Migraines, and those were enough to cause me to have to after 25 or more years fighting them, had to quit working. They were so often and so severe, that I missed way too much work due to those. Then came my joints "falling apart" before I was even 35 years old... "arthritis" and people say how can someone so "young" have that had of arthritis that "eats away" at the joints. Well, we now know that infants can have RA, Juvenile RA, and some of them as young as 9 months old! So imagine, an infant so young, and the parents realizing that this hell of a disease shall effect their child or children for the rest of their lives.

I have always said, for anyone especially those in Congress, in the CDC, and so forth, that would like to "walk a week or two" in my or many others shoes with these illnesses would be screaming out for anything to relieve the pain!

So, the article below is just one example of how we still do not have ENOUGH EDUCATION IN OUR GOVERNMENT, in our NATION and around the World about ALL of these diseases that bring on severe, chronic, daily pain!







http://nationalpainreport.com/opinion-cnn-stigmatizes-pain-patients-8830432.html