Sjogren's and Just How We Lack Professionals in the Medical Field that truly Understand all of what Sjogren's can do....

Such an important thing - there is certainly NOT enough education, even with the medical professionals when it comes to Sjogren's. I in fact even after trying everything in my power to fight the autoimmune illness, lost ALL of my teeth to Sjogren's. It was a very hard ordeal to go through and even today, it remains something I feel "odd" about,although my dentures are very pretty. But, each and every one of my teeth were "eaten" from the inside out, and no signs of Sjogrens appeared to be causing issues, until suddenly I had 3 or 4 teeth completely break off at the gum line. I went in to see my dentist, who actually sent me to another dentist due to my own having also issues with horrible arthritis that is not allowing him to do nearly as much dental work. He had been a dentist here locally for gosh 30 plus I am sure... anyway, I was given a "full round" scan... and inside just about every tooth, you could see that basically all I had was a "shell" left... thus after over a year of pulling them all, and allowing all of that to heal, along with a couple of dry sockets, then one of the tiny cartilage bones between my maxillary sinus passage was  pulled and thus a tiny hole that they call a "communication" happened. This I had to have that "repaired" two times, then allow it to completely heal over before I had the final teeth removed, and the dentures put in place. After that, I had to wait another almost 3 months for the bone and all to heal. Then I had the "mini implants" put on the bottom dentures to hold them in place... besides all of the time... the COST is ASTRONOMICAL!!! And even though it was caused by a "medical illness" I could never get a dime out of my insurance for any of it... just insanity... and at the very LEAST that type of thing is in the ballpark range of $12,000.00 and usually much more depending on which dentist and what your complications and so forth could be...

Here is an article that gives some answers to questions about Sjogren's...

http://www.niams.nih.gov/Health_Info/Sjogrens_Syndrome/default.asp?WT.mc_id=social_niamstwitter

Oh MY!!! I almost missed it!!! I had my days Mixed up.... #HAWMC - WEGO Health Writer's Challenge

This has not and never will be an easy thing to do. "We" and I am speaking us that are chronically ill and/or having Chronic Pain. All too often others that mean well, can sometimes really say or do some very hurtful things to us. Some, they may mean it to be that way. Yet, often family and friends, really don't want to make us feel badly, yet they do.

I know my Mom will come up with some "hair brained" idea from "television". She will "partially hear or see" something that she thinks may just be the answer to our prayers for me to "be well". A I have tried to tell her hundreds of times, those "gimmicks" are just that. They are trying to get your money, and the majority of the time, whatever it is, would not work.

So, I have gotten to the place, that rather than "appease" her or anyone with these solutions, I inindate them with the "truth". I have taken the Arthritis Magazines to her. Health magazines that cover what is really going on. I also print things from online. I have taken many examples of the "truth" behind my illnesses, my pain, and why I do or don't do some things. What she and others do is try to tell me "what I should or should not do"... I guess that bothers me more than anything.

NO, maybe I should not have been on the chair today putting up a new mini blind. BUT, if I don't, who will? There is NO ONE I can call at the drop of a hat, that can come over and resolve my daily house stuff, that I have to do. My coffee pot went out this morning. I also needed a different size mini blind. Then I saw the one in the next window was also broken, thus I needed two of them. Did I really "feel" like going back to "Wally World" this morning to get those things? No, I wanted to be here, home and writing. But, once I saw that I needed those, plus the curtains in my bedroom needed laundering, so down they come, and into the washer and dryer. I realize that there are things I can't do. I know about how "far" I can push "me" before I am doing something "dangerous". I have osteoporosis, and it is in the "severe" category. So, climbing on a chair hanging blinds, and getting curtains down to launder, then putting them back up is not the smartest thing in the world to do. But, again I HAVE TO! It is up to me. This is our home, Jim is still not able to do much of any of that at all, whatsoever. Thus, I do what I can.

So, when I go over to someone's house, or see them in the store, and they ask me what I've been doing. I tell them. I know one day a lady I know caught me in a "not so great mood" at a store... She began going on and on, about her toe was hurting, and she was upset because her nail lady could not get to her, and she didn't know what she was going to wear out dancing that night. So, I looked right at her and said, "Well, at least YOU CAN HAVE YOUR NAILS DONE, and you can I am so sure color your hair today. Besides run over to Beall's, they are having a sale. Maybe you can find a dress you like, or an outfit. Then I told her, at least you get to go out, dancing, to dinner, with friends on the weekends. I sit at home, ill many times, and can't even go to dinner on my wedding anniversary, the 10th one at that. She kind of backed up and looked at me, and then said, "Well, I guess I didn't realize that you and your husband had that many health issues?" Well, she didn't know because she was too busy running her mouth about her world, her life, her job, her kids, blah blah blah... and so on, and never once asked about my life.

So, when I get "that look" using my disabled parking sign, or I ask someone to help me with my groceries to the car, I just stare back and should say, yes I AM ILL - YOU may NOT see it.... yet it is there... I am to the place, if I go into the store, sometimes I don't have makeup on anymore. Maybe I am not dressed to the "nine's" at times. By the time I do what I need to do at home, then have to shower, dry my hair and dress, many of my "spoons" for the day are used up and I need another handful just to make it through the market, and the pharmacy.

So, people that DON'T KNOW, rather than stare, ask me. My life is an open book. I will tell you all about my Lupus, RA, Sjogren's, knee replacements, shoulder replacement, losing ALL of my teeth this past year and have dentures due to Sjogren's. Ask me about the fatigue, the cold sweats at times, the times that I so wished I could just sit down in the middle of the floor and CRY until either the pain stops OR I can't cry any longer..

Before you "cast" a stone.. try to make sure the target is what you think it is. So, yes, if after a round of "high dose 14 day Prednisone", I have a couple of pounds, I can see, so I know others do too. It may take me a month to get off those couple of pounds, but they will come off.

And if I "can't" go out to dinner, or out shopping, or if I decide there is no way, I can do laundry today, then know when I can, I do, and always will.

#HAWMC