Taking A Moment Away from the Griping and Fussing over illness and pain to say " Happy Mother's Day" to All!

Before I get back to my griping, fussing and being "sick and tired" of feeling "sick and tired" I thought I would stop and take "inventory" of Mother's Day, coming up on Sunday. It used to be a "tradition" of ours, to take my Mom, and the three of us go to one of the casino's. The last several years, we usually go to Oklahoma, to Winstar, because it all has you could ever want or need, plus it is quite a bit closer than going to Louisiana. :)

After my husbands accident last year in March, that kind of put a damper on things. In fact he was still in the hospital at Mother's Day last year, and Mom and I went together, just the two of us, and had a wonderful time. We usually have a blast together, whether it be at a Casino, or just a day away for a "window shopping trip".... so not being able for the 3 of us to go right now, kind of changes the scheme of things. Yet, life is like that. We never know when within a breath's space our entire lives can be changed forevermore.

This year is going to be a real challenge for me. Now I face yet another round of tests on my lumbar/sacral spine. They just called to sit up a "discography" to be done in Dallas at Medical City. I chose to wait until the last part of the month, on the 27th, which now I am wondering why I decided to wait that long. Today, I feel like I've been ran over by a train, and then backed over and ran over once more. My back had been feeling "somewhat" better. And of course between our freaky weather, and all I've been doing, my back hurts like hell right now. But, so does the rest of me. So, I figure I've either came down with a slight "bug", or it is a "flare" trying to come on... fatigue, pain, lethargic, nauseated, my head feels like it could explode and our humidity has to be at 100%!!!!

Anyway, I said no "griping" on this post :)  So, again below is what I posted to all of the Mom's on Facebook. Thus, here it is for all of you also.

Enjoy your kids!!! They grow up much to quickly. Just turn around once, blink your eyes, and within a breaths space, they are grown, often married, with family's of their own, jobs, and all that life entails for them. So, everyone with little tot's please enjoy every moment of the funny, silly, and sometimes messy things they do... for it won't be long, they will be out of high school, out of college and out into the world all their own....

And you shall be wondering where the time went....

With Love, Honor and Wishing All Mom's out there a very Happy Mother's Day!

I wanted to post a "shout out" there to ALL MOMS! Mothers Day is here on Sunday, and before I get too wrapped up in things I want to make sure to let every Mom, Step-Mom, and so on know just how incredible you are. The many nights we've stayed up with them when they were little, or ill, to the days of school, lunches and parties. From the PTA meetings, cupcakes for the class, all of the special birthday parties, holidays and decorations we put out for our kids to enjoy. From the days of worry over them as they grow a bit older, and pray "we've raised them right... those times we think "they didn't come with an instruction manual, and that pain we endured when they were born, and how quickly it melted away as soon as we heard that first cry. They always remain "Our kids" no matter if they are 3 yrs old or 35 years old... kids still are kids to parents... I am so proud of my two "kids"... although both grown, my son 35 soon to be 36 (I think) and my daughter 31soon to be 32 (I think);) and her awesome husband and my 3 great and wonderful grand kids. I so wished we lived closer, we just don't get to see one another as we would like. Yet, life is life, and sometimes things are not exactly as we would like them to be. So, thank goodness for FB, so she can keep me up to date, with pictures of all of their events, and I have got to watch them "grow up" via Facebook! :):) For that I am elated. I wish each and every Mom out there an incredible Mother's Day! Whatever and wherever you get to go, or stay home, visit, rest, and however you celebrate, may you be well, free from pain, if only for that day, and know in your heart, you are a fantastic Mom!!!! 

"World Autoimmune Arthritis Week" Race Around the Globe! Are your Ready! by the International Foundation for Autoimmune Arthritis

WOW! May 2015 is going to be a very busy month for all advocates!

We have several "awareness" things going on for May and one of them is the "Race Around the Globe" for a week of spreading awareness about Autoimmune Arthritis!


The International Foundation for Autoimmune Arthritis (IFAA) is putting this week on. It begins on Ma15th, and around the Globe many entities will be participating in it.

Here is a link to the official "PR" release:

http://www.prweb.com/releases/2015/WAAD/prweb12684750.htm

For More Information about This Amazing Race Around the Globe - Host by IFAA, where you can also sign up to participate see:

http://www.worldautoimmunearthritisday.org/home.html

Lupus awareness Month Started May 1st"

Here we are, the time flying by. It seems like just yesterday was the beginning of the new year. Now we are already experiencing "spring" in the air, Fall has faded, Winter has "winterized" and with Spring Comes "Lupus Awareness Month"!

There will be MANY activities this month from walks, to all types of other advocate projects that you can help with.

The most important thing you can do is "Spread the Word" and educate others about Lupus!

I have literally been surprised at how many people, including  Medical Professionals, are not familiar with Lupus. Difficult to believe with all of the information out there about treatments, medications, new medications on the horizon, social media, U-Tube, and many, many of us are continually "hooked into" being online in some realm.

So, it is time to tell your story about Lupus. Tell a friend, post it in your local newspaper as an Op-Ed, or send a Letter to the Editor. Post a poster on your Facebook, or blog.

There are many ways you can reach out and let others know about this serious, life altering, life taking illness.

The "New Addition" the the Royal Family in Britan - New LIttle Girl is here!!!

Kate and William brought out the little bundle of joy for all the world to behold today. This is after delivering yesterday!!! Kate looks amazing, but I bet she is give out tired.... ;) and running on "that after glow and excitement".... I am thrilled it was a girl... I had hoped it would be... it will be awesome to watch how they dress her....

So, Congrats to the Royal Couple, their Little King and their latest Addition of the "Princess"....

Where do you Go? Hip, lower back pain - CT Scan shows "something" yet it seems like now enough to cause this type of pain...

I've been going over and over this stupid CT Scan from a month ago. I wished I could get more information, but when I look up what is being told on it, I am getting a "google" search of all types of issues. Some of them may pertain to me, and others I am not sure of.

I am sure of a couple of things. I almost am to the point I cannot sit at my computer. If I sit here more than 10 minutes, my hips, butt and lower back just throb, burn, ache, and it feels like very deep bone pain.

Nothing has really changed since the injections (Transforminal Epidural Steroid Injections) which were two weeks ago, as of tomorrow. I thought I had felt a bit of relief that first couple of days afterwards. But, then I began to notice my hips once again feel like they are on fire if I sit for very long at a time. I can get up, walk around for awhile, then the pain comes back, resonating kind of from my tailbone, down into my hips, around the outer part of my thighs, and often into my calves and down into my heels. I notice if I try and get out in the yard to pull weeds from the flowerbeds, pick up things and put them in our trash cans outside, try and break down small limbs from the trees and also trash them... after a bit, again that deep down kind of like a burn starts again. So, if I sit for too long, especially here at the computer, or if I go and walk or stand is the worst for a long time, my hips and very lower back just hurt like hell.

I am still in the thinking that I have two problems... the hips and then my lower lumbar spine about where it joins at my tailbone. That is actually where the CT picked up some issues, I have vertebra I think, that has "slipped forward"... plus I have the Retrolisthesis


which is also meaning it has slipped the opposite of what many of them do... plus I have known about my "crooked spine". Now the levoscoliosis I guess is enough that it shows on the scan. All of which even though don't appear on the CT as being horrendous, as before they have done Scans, X-rays, MRI's that show not so bad. Then they decide to open the joint up and take a look, and sure enough the "arthritic" degeneration and damage was where it was not seen on those scans.

http://www.spinal-foundation.org/conditions/vertebral-slippage... 

It has been exactly two weeks ago today, since I had the "Transforminal Epidural Steroid Injections" in my very last Lumbar spinal vertebra L-5 and then I believe S-1 shows issues also.

I thought right after the injection that it felt better. Yet, after a couple of days, I began having the same types of issues, pain when I sit for very long at the computer, pain if I stand too long in one place, or even if I walk for a long distance, especially like shopping... where you stop, then walk a few steps, and over again....

My thoughts are that I have two issues, as I've said all along. I feel both hips are a part of this, simply because this is what has happened a couple of times over the past 6 or so years. It seems about once every two years my hips act up, probably more like bursitis. Which, my orthopedic surgeon seems to think that "bursitis" of the hip would not cause all of the pain I am having! WELL, I have news for him. I've had it before and it hurts like hell. So, where he gets off thinking that my hips are not the issue and my back is, I am not sure...

Anyway, I am headed to Dallas in just a bit to follow up on those injections. While I am at my pain specialist, I will ask him what his opinion is on having this discogram/discograph... that the ortho doc seems to think I should have....

When I return, I will update everyone on the situation!

WEGO Writer's Challenge! "You have made it!!!! 30 days and 30 posts! #HAWMC

Wow! What a fast month this has been. I realize I post on my blog daily most everyday of my life. Unless I am sick, having surgery, or out with myself or family at the doctor's I keep my blog very current. Often times more than once or twice in a day. Depending on what I am finding online, there maybe several posts in a days time.


This has been a wonderful and thrilling April 2015! thank you WEGO Health for the chance to be in this "writer's challenge" and I hope to be able to do it "annually" for as long as you offer it. The prompts were fantastic and it really gave me a much broader sense of what to write about. Sometimes as an author and writer, and blogger, I feel I get "stuck" saying the same things over and over again.

So, having another party give me the "prompts" helped to open my mind and heart up to write about some things I may not have thought about. So, I commend all of you for the hard work, for the "tweets" for all of the other writers, bloggers, and authors out there that I have gotten to know over this past month. That is another awesome thing about the Writer's Challenge. I've been able to "meet" new people, and see what they say about some of their own battles with all types of health problems. I thoroughly have enjoyed all of what I've read and I have learned so much from each of you. That in itself is such a wonderful blessing.

Oddly enough, now that we have become an "online" world, where "everything" can be known within a few short clicks on the keyboard, makes our world seem to be a much smaller place than it used to be. So, I may make friends with someone right here in the North Texas area, or maybe someone in Australia. I love being able to know people from other states, and countries. To see how their health care is, how far ahead some are from us, especially the UK, when it comes to Autoimmune Illnesses. They seem to be several steps above us, with new medications, research, clinical trials and more.

It is difficult to pick any one thing about the "prompts" or the entire Writer's Challenge that I could say I was not that crazy about. I felt that you did an incredible job of really making us dig deeper, and really think about different things when it comes to our own health issues.

I loved ALL of the prompts. Of course there were a few I liked more than others. I have to say the "acronym" was one of the biggest challenges. I liked it, but it was one that I guess may have been down on the scale of being a favorite. Yet, I learned things from it also, so it maybe a "less favorite" but I did partially enjoy the challenge.

The product review for me is somewhat a difficult one. I feel that I may not really understand exactly what you guys and gals were looking for. I tend to write and blog more about medications, research, new clinical trials, and so on. So, it took me awhile to decide whether the "favorite" products should be something more on the "medicinal" side, like prescriptions, or more like things we buy over and beyond the physicians, medications and so forth. For instance what I use on my mouth, corners of my mouth, my skin due to the Lupus, discolorations and so forth. Some I am sure have other types of devices that may use, such as a "zipper pull" or something to help get things off of tall shelves, and so forth. I am sure many have types of gels they use for sore muscles and so forth. So, I tend to go into the "mini implanted titanium rods" that hold my dentures on the bottom very tight. After losing all of my teeth within a year to Sjogren's, those have been lifesavers for me.

I would love to see even more types of "prompts" possibly on a more personal level. You already have given us quite a number of those that required us to open up more about our battles with health problems. But, I could see maybe a prompt next year that asks us to open up and tell some of the even more hardships, and things we go through that we may not write or speak about much.

Other than that, hats off to everyone! From all of the gang, of gal and guys at WEGO Health, to everyone who participated in the Writer's Challenge for this year, I commend all on their awesome posts, and what they said and chose to say that truly gave me new insight to myself and other illnesses, medications and how many of us are so "near" one another with our stories.

I loved many of the prompts. The "word cloud" was new to me and I really enjoyed it. The "Hindsight is 20/20" I truly liked. Stress Awareness, "telling someone "off" when they hurt your feelings", and the "travel" prompt was great also. It is difficult to pick one over the other because all of them were enjoyable. 

 I will be so excited to see what you "prompt" us with for next year! "If I am here, able, and still kicking, I look forward to participating in April 2016!!

I do hope and pray that by the time we do this again in 2016, my 3rd book will be completely written and published!!! By the way, that is another thing doing this has helped me with... material to use in my book. It also has given me some very good ideas about what to say, how to say it, and gotten me in the habit of the daily writing. I hope to take that even further, so I can finally finish my 3rd book (my own autobiographical journey) through the madness of chronic illness, autoimmune diseases, chronic pain, and all in between!

Again, I am just elated, yet a bit sad that it is over!

#HAWMC

Again WEGO Health, I've had a blast with these this month! I appreciate ALL everyone does for us as patients! You guys and gals rock!  Rhia

"I Wish I would have known? - WEGO Health Writer's Challenge - April 29th, 2015 Wednesday

Today's "prompt" for the next to the LAST day of the 30 Day WEGO Health Writer's Challenge, is "What I wished I had known in the beginning of my patient journey?" In other words, when you were first diagnosed, what do you wished you could have known, asked about, done, been more capable of understanding and so forth.

One thing that comes to mind is I wished I had known more about different types of "Rheumatologists". Our physicians (and I say this often) have almost "specialized" themselves out of the everyday field of medicine.

Rather than have as we did not that many years ago, a doctor, or physician that could see you for a flu bug, take out your appendix, deliver your kids, and give your kids their immunizations. My kids are now 35 and 30 years old. Yet, they both were delivered by our regular physician, that did all of those things. Even if one of mine had been Cesarian, he could have delivered him or her.

A medical doctor was a doctor of "all". Unless you had something that was really extremely unusual, they did not send you to a specialist to "set a broken arm". If you needed stitches, they did not send you to a plastic surgeon. When babies were born, you didn't have to go to an OB/GYN. Even some surgeries, were performed by your regular physician, unless it was some "off the wall" type of surgery.

I began to notice, right after my youngest was born, that doctors began to "not" do everything. If one of mine had an ear problem, off to the ENT doctor we went. If you needed surgery, let's say "female surgery", a hysterectomy, you saw your OB/GYN.

Then when it came to cancer, you were sent to any number of "cancer" specialists. It began as kind of an "umbrella" physician, an Oncologist. Then you began to see that branch out into "breast cancer" specialists, brain cancer specialists, intestinal cancer specialists, and the list continues on.

If you had a joint that needed surgery. It maybe that your regular "Orthopedic surgeon" may not do a "hip surgery" or "elbow surgery". You had to take yet another step into the "Orthopedic Surgeon" who specialized in that particular joint.

Now, it is almost insane. When I hear or see just home many "specialists" there are depending on what is wrong, it can make your head spin.

So, had I known that a "Rheumatologist" that worked with RA or Lupus patients, maybe totally different than one that was more into other autoimmune illnesses, I may have seen the proper doctor a great deal more quickly than I did. My very first "Rheumy" as we call them, was very up in age. In fact, he still gave "gold injections" and this was about 2007. So, at the time, seeing him may have been the right thing to do. He "named" off after extensive lab studies, and also seeing me several times, a "few" different autoimmune illnesses that I have. He began with MCTD ) "Mixed Connective Tissue Disorder", Raynauds, Sjogren's, possibly Lupus, but he was not "set" on RA. As I said he was really up in age, but honestly he was one smart "cookie".

Yet, due to his not wanting to be as "aggressive" with the latest medications such as the biologics, I make the decision to find another Rheumatologist that would be. Well, little did I know, until after seeing 5 or 6 different ones, finding someone that would "treat all of them", in an aggressive manner was not easy. Each one either specialized in Lupus, RA, and so forth. Plus they were not much into the latest of medications.

So, had I truly known the factors surrounding getting into the proper Rheumatologist, I may have been able to "prevent" some of my problems that were getting worse, due to not being treated.

I also wished I would have began researching the medications, treatments, and doing my own blogging sooner. Even though I had done a great deal of research, when it came to the Sjogren's especially, I didn't do enough, soon enough I fear. Had I really known just how quickly Sjogren's was completely destroying my teeth, I would have searched for either a dental specialist on Sjogren's, or made sure my Rheumatologist did know about Sjogren's and was more apt to let me know just how bad it could get so quickly. By the time I knew just how bad my Sjogren's was, it had already rotted my teeth from the inside out. It was not until after the first two broke off at the gum line, and I went in to get a full mouth digital X-ray, that my teeth were goners. There was no more patching to do. There was basically nothing left to try and "save". So, wishing Sjogren's had been one of these that a really got adamant about, maybe, just maybe, I would still have some of my teeth. Now, my dentist told me, that even if I had known around 2007 more about it, since there are really no "medications" designed to fight it off, and the two I took really didn't do much. It was already too late. Thus, I spent all of 2014, getting the entire mouth of rotten ones all pulled, getting dentures, then going onto having "mini implants" for the bottom dentures, so they will stay in place.

I also wished years before I got an "official" diagnosis with the autoimmune illnesses, I had really pursued the reasons why, at well before the age of 40 years old, my joints were in need of surgery. I had 3 knee surgeries, an elbow surgery, a shoulder surgery, and many of my joints injected from about the age of 21 to 40! The answer I got for the most part when I did try and ask "why". was always met with, "Well we don't really know, But I feel you probably have "arthritis" that has surfaced early due to "genetics". Well, it was true, my Dad and Mom both had arthritic issues fairly early in life. Yet, nothing like mine where anything I did hurt.

So, more research, a better understanding of doctors, and asking more questions are things I do wished I would have done differently, more, better, etc. when I think back on when all of my health problems first began.

#HAWMC

#HAWMC WEGO Health Writer's Challenge - April Tuesday 28th 2015 - Favorite Health Product

What product in relationship to my own unique health issues us a favorite of mine?

This particular subject has came up over the past couple of weeks several times. I really don't think I've ever given it much real thought, other than of course the special medications I am on for the RA, Lupus, Sjogren's, Heart Issues and so forth.

After it has came to this place of m being questioned, I've given serious thought to what items that I absolutely buy and use specifically for the autoimmune diseases, and or the symptoms that are always causing me some sort of grief in my daily life.

Even though the Lupus I have is not necessarily the "skin" type, I still have huge issues with discoloration on my skin, blotching, red spot, I do get the "Lupus Wolf Mask", my lips and especially the corners of my lips seem to always be very pink, or splitting. They have been horrible the past almost a month about splitting at the sides of them. I also have ulcers that develop due to the Sjogren's. It is also another "skin attacker". Our medications, for instance the Prednisone I take daily has a terrible effect on the skin. It can cause the red spots, thinned skin that is so easily bruised, plus a whole host of skin issues.

So, trying to find a product or products for my skin in different areas is difficult. Many either are too greasy or oily feeling. I put it on, and rather than sink in, it just feels like I have rolled in "lard" and have it all over me. So, I have come to find that if it is 100% Cocoa Butter, then I seem to be able to use it, and a huge plus is I can use it on my lips, the corners of my mouth, on my hands, arms, legs, just about everywhere, and even though it may feel "thick" at first, it starts to soak right in and give your skin a smoother feeling, without being greasy or oily.

I also LOVE the smell of cocoa butter. I have had several people just lately tell me they don't like the smell of it. But, I do. It smells so wonderful, so that is another huge plus. Anything that has a nice smell to it, you tend to use it more, because you like that scent also. 

I have my hands it seems in water, or cleaner all day everyday. So, another issue is finding something that kind of soaks in and does not just wash off as soon as you wash your hands. The Cocoa Butter does that for me also. I can put it on, and even though I am always cleaning something, washing something, it tends to stay on through a several hand washes before I have to apply it again.

It is not inexpensive for the most part. Even buying the more "name" brand of Palmer's Cocoa Butter products are a bit more thrifty than many of the items out there now days. In fact I was just in the process of placing an order online earlier this morning, and  was glancing through some facial products, lotions and so on. Even on Amazon, some of those items are so expensive. They really know how to "market" to women. I know there are many of us that easily spend three or four times as much as we have to on items for our skin. Whether it be for the face, for the body, feet, hands and cuticles, that is another good point about Cocoa Butter. You can use it just about any and everywhere on your body. So, it is an "all purpose" skin smoother, softener, and I have never had any rashes or breakouts from it. I use it on all of my "scars" from the many surgeries I've had. It does fade those also. It may take awhile depending on the type of scar or incision you have, but with Cocoa Butter, you do find most scars begin to smooth out, lay more flat, and then fade within a short period of time. There are many "scar" fading products out there. Especially when it comes to stretch marks. Again some of them are horribly expensive. There is also some you can get as a prescription, but the main ingredient in it that does the fading smells horrible. I have a tube of it, I do use where my neck has almost a purplish red permanent tint to it. It runs up the sides of my face, under my chin, and even up behind my ears. The ingredient in the fading cream besides smelling horrible, also has to be used with care, as far as where you use it on the body. So, that is another point to consider. 

I know there are "generic" brands out there. I keep the "swivel sticks" by Palmer's with me all the time. I have one in my purse, and another on my desk. I also have the cream and lotion in jars or bottles that I use also. But, I have found that although the generic brands are okay and they work also, it seems Palmer's Cocoa Butter, tends to be a bit creamer, tends to have even more of that wonderful smell, and it not "gritty" feeling. I bought a "generic" brand of the stick one a couple of weeks ago. I noticed immediately when I opened it, it felt a bit gritty, rather than as smooth as my usual brand.

As I said they make several different formulations of it, depending on where and what you are using it on.Even on my toughest parts of my body, like my cuticles is another place I have terrible issues with, this tends to help them to heal better, and again without the high cost of having several different types of creams for different areas of the body.

I feel that the Cocoa Butter for me, is almost a "one stop" shopping article. Just about anywhere I need to use it, I am able to, and I don't have to worry over buying multiple lotions, creams, and then being concerned on where I can or can't use them. 

I would recommend anyone that is battling either cracked skin, heels, cuticle problems, discolorations of the skin, fading surgical scars, stretch marks, or for a general lotion, to try 100% Cocoa Butter. As I mentioned there is one very popular name brand product, and since it is not expensive I would say to try it, rather than a "generic brand". But, a generic brand if it contains the same ingredients would probably give you the same results. 

#HAWMC

Monday #HAWMC - WEGO Writers' Challenge! H. E. A. L.T. H. - April 27th 2015

Talk about a post to think about. So many "words" for so many illnesses, symptoms, medications and the like. So, I shall give this one a try today  - come up with an "acronym" to describe my activist journey.

"Hoping Extreme Activism Leans Towards Healing"

Hoping

Extreme

Activism

Leans 

Towards

Healing

This was is not as easy as one might think. To really use only what "letters" given or a word for example, such as this without putting any other "in between" words such as "IN' An, The, and so forth takes some thought. So, since I do at times "feel" like I want to take my own "Activism" to the "Extremes" so one day, what I have accomplished does lean towards others "healing".....


Great one WEGO!!!!!!

#HAWMC

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