Showing posts with label WEGO. Show all posts
Showing posts with label WEGO. Show all posts

Tuesday, November 22, 2016

Monday WEGO Health Blog Challenge for 21st of November - "Motivation Monday - A "Life slogan? What helps to make the experience so special?"

Monday, November 21,2016 WEGO BLOG CHALLENGE - "Motivation Monday" A Life Slogan that gets Me Through The days, that something are less than expected to be...




As I've always said in life, "IF you want the job done, and done well, you must dig your heels in, get your hands dirty, and stains on those "white jeans" and do that job yourself.

 My "mantra" has not changed all that much, other than the fact like this past 10 days, for 2 weeks I WAY OVERDID EVERYTHING!! Cutting down tree limbs, cleaning up my yard, re-potting plants, throwing out an old loveseat I had to literally take apart to get it out of my door, then dragging a heavy 10x 12 area rug out so I can replace it, re-arranging furniture, brought ALL of my very heavy houseplants in just before the cold got too bad for them, and I am talking about a palm 8 foot tall, my fern is about 12 foot around at least, my ginger plant is over 8 foot tall, and several more not quite as heavy but still burdensome to get into the house, after having to clean them all up, clean the pots, re-pot some, pulled one air conditioner unit out of one window, that I needed to throw away, and it was the small one. The large one is on the fritz and I have to get it out of that window, but I think my neighbor may have to help with that one...

I have TWO BROKEN WINDOW PANES, well I really have 4, these old glasses after 50 years are so brittle, but I am replacing them with plexiglass so for the most part I can do it myself, rather than have to be concerned about holding a piece of glass in place, while you try to place the push pins in, then get the glazing around it... so I am going to opt for plexiglass for now, and then worry about something else later... and I've baked some, and that is not including the running around errands, the regular house work, and my list goes on and on... thus I KNOW I did this to myself, with the assistance of Lupus.


#HAWMC
I also know some things like hanging a ceiling fan now, and other things that require me to put my arms up and hold things up very long, I am going to have to get help with some of those, and the heavy stuff... after all of the lifting, pulling, pushing, etc... every joint, every bone, every muscle hurt, I even thought I had broken ribs it hurt so much to breathe... but ALL OF ME WAS SORE, EXTREMELY SORE, I had a horrid Lupus Migraine for days and days, the night sweats (cold ones), fever off and on.... my joints in my hands and thumbs are now so bad, my Rheumy will not believe how bad they got within 3 months or so...

But, even as my PA told me yesterday, she "understands".... she said I could "scold" you BUT, I DO THE SAME THING! I can't afford someone to cut tree limbs, and shrubs, or do lawn work, and lots of things that need to be done, she said there is just ME, and I have to do it come heck or high water... but THEN she said BEFORE MY CERVICAL SPINE IS WORSE THAT IT ALREADY IS, I'VE HURT IT TWICE AT LEAST WHEN MOM WAS SO SICK. Then I hurt my lower back here doing all of the stuff at home... to the point that NONE of my pain medications would touch it, BUT corticosteroids, are about the only thing that will get rid of this "type of pain"... it works on my other pain fine, but when it comes to "inflammatory" pain, all of the regular pain meds in the world will not get rid of it...

So, my "life's talk" to me is still the same, for the most part, "If I want it done correctly, and when I WANT IT DONE(like NOW) I must dig my heels in, hands dirty, clothes dirty, and "remember" to take it either slower, or try and get "some help" for some of this stuff that now is beyond my body's capabilities...

That is what gets me through my days, that and my two fur kids, even though sometimes they grate my last inkling of nerve I have... and knowing life goes on...so I can get up and DO SOMETHING, OR I CAN SIT AROUND, HURT, MOAN, GROAN AND FEEL SORRY FOR MYSELF. (Which for me is NOT what I want, nor need to do.)

Sunday, November 20, 2016

Shout Out Tuesday! (I missed!) sharing the love to those Health Activists that Truly give me a "hand and foot up" when I need it the most! (TUESDAY 15th ,2016)

TUESDAY 15TH - WEGO BLOGGERS ANNUAL EVENT -  shout out Tuesday to some of my great people in the HA and friends world!




I must thank Laura Keivel with the Arthritis Foundation. She has helped me and continues to help me get through some of the very tough times these illnesses , and life can throw us in. From all of my own health issues, to Jim's accident while I was at the Summit with them in DC in 2014, Laura has been right there, helping me in any way she can as a mentor, a friend, and giving me advice to make me feel like I can still "charge through these things" and bring my activism and writing back on tract. Laura, you are just a true angel.


Barby Ingle and I got to know one another through chronic pain, and also with her writing, her testimony and advocacy skills, and also someone who can be so ill and in the hospital yet bounce back and be on the road again, never allowing the pain and chronic illness steal away her "show" through her goals, Barbe Ingle, you are an inspiration.

Kerri Fabert I met during my 1st Summit in 2014, She lives about a bit over an hour away from me, and has Sjogren's that now is effecting her sight even worse than ever. Yet, again, she is a loving wife, Mom, and works in the medical field, as well as does the Jingle Bell Run, and other events to help get the word out about autoimmune illnesses and yet how we can ALL can contribute in one way or the other, Kerri THANK YOU FOR ALL OF YOUR KIND WORDS and being a role model in so many ways, activism, being a fantastic Mom, Wife, and friend.


WEGO Health has SEVERAL INCREDIBLE PEOPLE, that always are there to answer my questions, and listen when I need an ear to "bend".  Susan Mees, Danielle Schroth, who is Community director and also works with Cure Ckick, helps to make Cure Click something that everyone can do to help spread the word about Clinical Trials. I am so proud to be a part of Cure Click!

Pam Gill, from the more "local" part of the Arthritis Foundation, I met at the 2014 Summit, is just a sweetheart. She is a huge advisor for our District in this Central portion of Texas, and keeps everyone up and going' excited about all of the activities, from the National, to the State and Local parts of the AF. Thanks Pam for being a great friend and even though we don't speak much, I always know I can email you for guidance and help.

KRISTEN AT WEGO is such an upbeat and sweet young woman! She is always giving up hope, encouragement, and reasons why she feels "we" are what makes "WEGO" work! - "the patients"!

Gosh, then there is Laurel, Jackie, and so many at WEGO Health, that I am so thrilled to be in touch with from time to time. Everyone At WEGO are just wonderful people, and I feel blessed to be a part of the patient team.

There are so many more of you that give me hope, lift me up, and give me the strength to move on, even when I feel I am not make enough of a contribution,

Clarissa Shepard who has a huge following on her Facebook group about FM, and the illnesses that go along with them. Clarissa is also a dear sweet lady and friend, who is there when you need her, and works herself day and night keeping up with all of the information about FM, and the other illnesses that go along with that fight, Much like other autoimmune illnesses, Fibromyalgia, is yet another one of those mystery illnesses that we still have a very long way to go before we understand the issues surrounding this horrid "disease". I appreciate you Clarissa and thank you for your hard work and friendship.

This is hard to do because I know I am missing many... but know ALL of you are in my heart, and I am so elated and feel honored to know each of you in all ways....

Friday, November 11, 2016

WEGO Health Day 11 - Bloggers Challenge a "TOP TEN "must follow" Lists From Facebook Twitter, and Blogs....

This one is kind of a mixed up "bunch" for me. I have those that follow me on Facebook, but they may rather follow my blog posts, or I know I have a good deal of following on Twitter. I really never have "kept up" with the number that come back again and again, but do know those that comment and read often, because they either give me a thumbs up, mention my "Newspaper" yes, I do have a Daily Newspaper I put out, FOR Chronic Pain, Chronic Illnesses and Dementia. I send it out daily on Twitter, Linkedin, FB, plus there is a follow page on my blog, in case you want to joint my daily Newspaper. I will say the newspaper "seems" to be giving people a great deal of information, because the articles are from reliable sources for the most part, I have also "tailored" it for those with the Autoimmune, Chronic Illnesses, such as Diabetes, Heart problems, and so forth, plus Chronic Pain, and all that comes with the controversy on it now, especially on our medications for chronic pain. Plus I added "Dementia/Alzheimer's" after my Mom passed away last June 9th, due to the fact I "feel" that it may run in our family, on Mom's side. Both of my Grandparents had it, but my Grandfather, had full blown very difficult Alzheimer's. Mom's turned into an aggressive, what we feel was the "Lewy Bodies" Dementia, that I watched take a woman of 78 years old, who could still drive, clean her home, and cook, etc... to within 4 months go to being bedridden, in diapers, could not even remember her home, who she was, and mostly had no memory most of the time of who I was. Within 2 more months it took her life. One of the most difficult times in my life, and something that has "changed" me forever, in SO many ways.... some good for the most part, and some may say things that may not be so good... but I know to just roll with the flow of it all, and NEVER take ONE MOMENT of life for granted.

So, Here is kind of a "mixed list" of blogs, Facebook friends, Twitter followers, and those that comment, and are "followers" in one way or the other....

Facebook Followers and I follow them also

Denise 

Venetia Shafer- FB

Amanda Matheny - FB

Cynthia Carr Czaplicki - FB and she really is wonderful about making comments and reading, plus she is a relatively new friend there. 

Betty Walters - FB

Raymond Veditz - FB
Judith Flanagan  - FB
Barby Ingle - FB
Nancy Hershalman Gipson - FB
Jean Marie Ely Breaux - FB
Jane Gill-Wilson  - FB

Blogs I follow (and love to tell others about)
Arthritis Foundation (I know it is a website but they have a blog also)
The Hurt Blogger
Rheumatoid Arthritis Guy
All Flared Up
Little Miss Autoimmune
Barby Ingle (all of her writing, articles, books & more)
Float Like a Buttahfly
Not Standing Still Disease
An Autoimmune Arthritic Systemic Life (of course my own  ;)
WEGO Health's Blog, & ALL of the Help. Challenges (good kind) and assistance they give to all of us!! (Website in general)
Creaky Joints

Twitter Followers

JoJo @SuzieMay08
Told You I Was Sick (Also great blog/writer!)
PajamaDaze
Arthritis Foundation
WEGO Health
Cure Click
Cluster Shade
Patient Power
Elizabeth@themamaspace
A Chronic Voice
 

And there are so many more, that either follow me, or we follow one another on Facebook, Twitter,Linkedin, Blogs, and even emails. There are many URL's that truly "help and guide me" at times.  US Pain Foundation, and International Pain Organization, Med-Page and any "medical newsletters I get and save. they are also a wealth of information.

So, to those who I may have "missed" here, I apologize, because I do see and read you, your posts, and know much about your lives and what all of you are going through.

 

So, Here are my lists!

 
#HAWMC  
 
 
 
 

and by the way, here is the link to my newspaper and the name of it!

http://news.autoimmunearthriticsystemiclife.com/#!headlines

Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®

"All aspects of autoimmune & chronic pain illnesses, fighting to survive & grow past them"




 
 

 
 
 


 
 





Sunday, November 6, 2016

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

WEGO HEALTH

https://www.facebook.com/hashtag/hawmc?source=feed_text&story_id=10154656411124254 

 FACEBOOK URL FOR POSTS FOR THE BLOGGER'S CHALLENGE

 

 

Friday, September 25, 2015

#RABLOG Post WEGO Day 5 - Your Favorite Exercise and How to try to stay in Shape

For a huge many of us, even those without Chronic Illnesses, joint problems, RA, Diabetes, and the list goes on, we DO HAVE problems finding the proper exercise that fits into our "health problems", that gives us enough exercise to get the heart rate up, curb the fat intake, and keep muscles in tone, and help to keep our bones in much better condition also.

I have to admit, all the time I was in Jr. High and High School, I was never one for working out, being in Volleyball, playing Basketball, or playing in Little League. Throughout the most of my younger years up until about the age of 21, I had a weight problem. I was not just hugely obese, but I did have more weight on me, than someone with my build and height.

I also had actually while playing baseball with my friends and cousins at the age of about 14 years old, was used for "2nd base" rather than the base itself. I had a very severe tear of cartilage in my right knee. It got bad enough, that I could not participate in any type of PE classes, and that next Thanksgiving Holiday weekend, when I was about I guess 14 or 15, I was in Baylor Hospital, the children's wing for Orthopedics.

I spent 7 days in the hospital after having a very huge surgery at that time (it meant cutting along the inside of my knee and the scar was about 8 inches or so long. In fact my Dad came and ate Thanksgiving Dinner with me, since everyone was at my Grandparents having a feast, and he dd not want me to be alone. The funny thing was, they brought 2 huge plates with all of the Thanksgiving fixings on them. But, they accidentally left the slices of turkey off of mine... it was so funny! But, that right leg, was in a full cast that as from my toes all the way up to my hip as far as they could get it. I was in that hot thing (thank goodness it was Fall/Winter, for over 3 months! My Orthopedic Surgeon, who did work on the Dallas Cowboys at one time, did an excellent job. They had done a special type of scan the night before, and he feared I may have some type of a tumor in my knee. He was not sure exactly what it was, thus the morning they rolled me into the huge OR, I had been told, I may come out and not have all of my leg left. If it was "cancer" then they would have to remove as much as they could in order for the cancer to not spread.

I came out fine and the "lump" formed due to the damage in my knee. In fact, before the surgery it had gotten so large that my muscles on the side of my knee would "jump" over that lump. So, I spend 3 months at home, no elevator in our old 3 story, plus a basement high school. So, Mom and Dad picked up my books, and lessons, and then turned them in for me each week.

But, that one incident put me on the road of having to be cautious the rest of my life about what type of sports I played in, or anything that I may put a large amount of stress on that knee.

I went ahead to snow ski for several years in my late 200's and early 30's. I became an AVID walker, and walked at least 5 miles a day, 6 days a week, and sometimes 7 days a week. Then as the years past, the lawn work, gardening, even snow skiing had to come to a halt once I was diagnosed with SO MANY joints in bad shape. I had a left elbow and shoulder surgery in my early 30's. I also had the left knee with torn cartilage and had to have surgery on it. Then I had rotater cuff tears, in both shoulders, a couple of times, thus I had arthroscopic surgery on those at least 2 or 3 times each. Then I needed both wrist fixed, both with carpal tunnel, and chose to have the left one done, then so many other things developed, that right wrist was the least of my worries health wise.

This was about the time my PCP after seeing me for months, following all of my joint problems, labs that came back "odd".... he did a total screening for ALL types of autoimmune illnesses. His guess was right on the money. I had RA, Lupus, later came Sjogren's, also Raynauds. I also have Degenerative Joint and Disc Disease which also contributed to more surgeries, than I could even count.

In 2007, if my memory serves me, I had 8 SURGERIES, that one year! Finally ending with both total knee replacements, then after several scopes, I had a complete "reverse" shoulder replacement of my right shoulder. I've had gallbladder issues, and had that removed, and in which complications sent me quickly to Dallas at the Methodist hospital, where I spent 6 WEEKS, and they never really "got" exactly what was wrong, and at the end of my stay, I had a 2nd heart attack, before leaving the hospital.

I've had to have a 4 level cervical spine surgery, replacements and fusions, my hips have been injected with corticosteroids numerous times. I recently had DOUBLE hernia's that required surgery, and in the middle of all of that, I lost ALL of my teeth to Sjogren's. It took over a year to get the bad ones out all the way and then get my dentures in, then wait to have the bottom ones "mini pinned" in.

So, after all of that I am sure you are wondering what the heck does that have to do with my "exercise" program now?

Now, I walk daily. Whether it is outside, around my long driveway, or around the house looking things over and making sure all is okay. I also try my best to do ALL that I can on my own at home. Whether it's vacuuming, doing laundry, cleaning the floors, cooking, cleaning, errands, some light gardening in the cool mornings or late evenings. I have a pedometer that I try to keep up with my "up" times. And I've found, as far as keeping in good shape, physically, mentally and emotionally, just being outdoors, looking at the trees, birds, waving at the neighbors, and so forth those are my ways of staying in shape.



I even cut smaller tree limbs when I can, or put leaves in a pile and use the trash can lid to help scoop them up. As I said, I have learned to "improvise" in many ways, yet the challenge of opening a jar lid, or getting on a chair or stool to put things in the upper pantry, or whatever the task is, if I feel like i can at least do some of those things, the less I feel depressed, I feel even though fatigued, especially if I overdo it, yet it is often a "good type" of tiredness. 

So, whether I am outside trying to clean flower beds, and walk all over my small bit of land in the back, or make 20 or 30 minutes around the driveway, to keep I am less stressed, more energized, and I feel at the end of the day, I have "accomplished" something worth while that day.






                  #RABLOG



Wednesday, September 23, 2015

#RABLOG WEGO's Week long RA Blog - Day 2 - How to "fight" RA Fatigue

This is one tough "cookie" so to speak. Some of us battle more often than others I am sure.

Those days when I get up and feel like an "18 wheel tractor trailer" ran over me and then backed up and did it again. There are times, that I try to just push through the temptation to get back on the sofa, and watch movies all day long.

Yet, life some days, even with chronic pain and chronic illness may not allow a day to "hide out". So, those times that I KNOW I am going to have to be up and about, I try to "plan" for it ahead of time. You can't "plan" the fatigue, but you can plan a time before you may suspect a very busy day, and that fatigue can come with those days. So, I tend to try and get to bed or at least relax a bit earlier that afternoon and evening before.

I try my best to find ways to doing some things either  during the time of day that I feel "less fatigued". O if I know that I have something that will take more energy than "usual" I try to rest the day before, or sleep by going to bed a bit earlier.

I also have found to make doctor appointments, or anything type of appointment where I need to go here or especially in Dallas, to make them between about 11:00AM and 3:30 PM. That way I can avoid that "fatigue" in the morning, and yet not have to deal with the more fatigue that comes on after a busy day... around 4:00PM.

I also try my best to "combine" things. If I need to stop at several places running errands, I plan my route where I can do the one that is further away, then work my way in to the closer things, so I am close to home as possible after I finish. I also at times have to do part of errands, shopping, house work and so forth and then finish it up the next day. If I have a large amount of groceries to buy, then I do that one day, and save the other errands till the next day. Plus if I can possibly get medications by "driving" through a drive through window, or even at the bank, I try to use the drive thru anytime I can where it is possible.

When the days are very hot, or I am just not feeling well, or fatigue has got me badly, then I use my Handicapped parking sign. That is a huge help especially at a very large store, and especially if I am having to buy things that are heavy.

I find also, if I stay "moving" once I am up and around, I am better off "finishing" up all I can before i sit down. If I sit down before some things that need to be done and rest, then it seems I am more tired and fatigued than I would be had I just finished everything up and then sat down to rest.

I keep myself on a set schedule as much as possible, as far as eating, sleeping, getting up and all. If I stay on a schedule, then it seems that also helps to fight the fatigue...

Of course there are times when it is just TOO much, and the fatigue just puts me down for the day... and if that happens, then I listen to my body, and I "take that day" or a portion of that day to give myself the "relaxation" it needs....


I can say also, that "mental and emotional" stress brings the fatigue on worse than ever for the most part... so trying to keep an even keel emotionally helps, but of course we are humans, and we have stresses to deal with... 



#RA BLOG


Sunday, April 26, 2015

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 WEGO Health's Writer's Challenge "How to "Smile" & Try and Feel Better Even Though Things are NOT as They Seem! How to Handle a "Bad Day"

I will attest, WEGO Health and the bunch, you have came up this entire month with some incredible "prompts"!


This is truly a great one also. 5 Tips to overcome" a Bad Day"!

I would venture to say (I guess at the moment I speak for myself), having chronic illnesses and Chronic Pain is almost something "negative" we live with daily. Of course some days are worse than others. We have our "memorable days". Those that we wished we could bottle up, and be able to open and have a sense of remembering them in touch, sight, smell, feel and thought! Of course all of us have those great memories. The idea of truly being able to capture them "hook, line and sinker" as the old saying goes could make them even more capable of giving over to the times when things feel like you are on top of the ever shaking mountain, and could conquer the world.

For me, I usually know very quickly, if I am going to have "one of those days." When I arise from bed, and everything hurts, I realize I have 3 or 4 doctors appointments, things my Mom needs done in that next few days, it is not sunny outside, OR it is HUMID and MUGGY; which brings on even more pain, that is when I feel like crawling under my bed, with my "granny blanket" as I call my favorite blanket with the silk on the edges, and hide for at least 24 hours, maybe more.

So, when things start off like that, I head to Facebook first, to find something "positive", "
funny, strange, thoughtful or whatever some friends have posted, that make me smile because they just have that ability. For instance, I have a dear friend who has a very busy
Fibromyalgia group. She seems to always know, when I need something to smile about. So, often times when it feels like I am "drenched from the fog of a lousy day" she has sent a "bundle of virtual flowers" and a small note to say "I totally get it and I understand". So, my first tip for "one of those days" is to "look" for something positive. If you have a FB page with friends who tend to find either positive things, pretty cards, or something funny to post, go and see if they have posted something. Usually if you scroll through the new posts, you will find one that just "fits" to make things feel a bit better. My next thing is that rather than allow all of that "garbage" to float around in my mind, I write down a list of what has to be done! Whether it is for just that one day, or for the next few very busy ones ahead, by writing them down on a list (I suggest literal paper and your favorite pen) rather than typing them out, making that list helps to put things into perspective. I feel I can better handle it all. I kind of purged it out of my thoughts by writing it on paper with my favorite pen (by the way, no one touches my favorite pen)! So, my 2nd way to make it a bit better is to write a list of what needs to be done, so you can kind of rid your mind of all of the stuff that is floating around almost eating at you.

My next thing I try to do, is take a look at the local weather. As silly as that sounds, once I have down a list of what needs to be done etc, then I want to know what to expect if I am having to go out and have things to take care of outside the house, the weather sometimes really makes a difference. Right now it is "thunderstorm, hail, high wind and possible tornado" time in Texas. So, if there is a 90 percent chance of thunderstorms, that are probably involving hail and high winds, then I decide what things I can do here at home done, and avoid going out in terrible weather. I know the day is only going to be worse, if I am fearing my new vehicle being hailed on, or going somewhere and having blinding, drenching rain, lightening and thunder all around. So, my 3rd thing to make for a better day is to KNOW what to expect weather wise. The weather makes such a difference "physically speaking" also. If I am already hurting, stiff, and feel lousy, then I see the weather has a high humidity, a barometric pressure that is nuts one way or the other, then I can "expect" the pain and stiffness, and "blame it on the weather" or at least partially know for sure, it is NOT helping.

Writing seems to be my way of truly ridding myself of the gunk in life that causes me great grief. So, my 4th idea is usually to write in my blog about all that is really eating at me, or post on Facebook, and ask my friends to keep me in their thoughts that day. Sometimes I just write and not post it. I hold onto it for a bit, to see if I really want to just rain pain down on everyone else. At times a post where I am griping, whining, fussing, and just letting it all out, is perfect for my Facebook page. When I can tell that others are also having a crappy day, pain wise or whatever, empathy goes a long way. Now, when I say empathy, I mean those people that REALLY understand what you are going through. Not the "acquaintances" that don't get it, because they are either not chronically ill, or have chronic pain. But, those friends who are often in the trenches of hell in illness, right along beside you. Or if you see there are other dear friends that are really having one of those days also, then I try and send a post to help lift them up. That empathy, can work both ways. If you are able to put aside your stuff for a bit, and tell someone else you totally understand, and you wished you could fix it, make it go away, or be better you would. Sending a little picture of something cute, or pretty, flowers, kids, beautiful scenery, anything that is positive and just can cut through that bad stuff for a moment, always helps to make me see, "I am NOT the only one having a heck of a day". So, writing and then also uplifting someone else can help me to put my own stuff into a better perspective.

Sometimes for me, since I love to bake, if things are really horrible, and I want to jump off the Earth, I go and bake something wonderful. Getting everything out of my face and out of my mind, and baking does that for me, can turn a bad day into "okay, I can deal". Then there are times, that I will just think to myself, pain or not, fatigue or not, do something constructive. I in fact have been having one of "those days" now for about 2 WEEKS! So, yesterday, as bad as I felt, I cleaned my house. I "swiffered" my hardwood floors, then I mopped them with my hardwood floor cleaner that smells like lemons. I got out my duster, sprayed some lemon dusting spray" on it, and went over pictures on the wall, around base boards, under the bed where all of those dust bunnies hide, and over some of my furniture etc. I am not talking a huge spring clean, but one where you can do just enough, that gives you a sense of you accomplished something in spite of the junk, and take a smell of just how "clean" and fresh your home smells. That lemon smell, or any type of citrus, just makes everything to me smell like a fresh spring and summer day. Plus, I could visibly "see" that my effort paid off. Things looked neater, cleaner, and I moved around stiffness, pain and all, which helped to take my mind off the pain, the stiffness and I got some exercise with it also.


Those are 5 that come to mind at first. Sometimes I just have to get out, and go walk. I may spend a half hour trapesing up and down my long driveway, ranting and raving to myself, about how life had just wronged me that day. Again, any way I can "purge" my mind of "the stuff the binds me" helps to turn a bad outlook around. Some days I take a drive to where my Dad is buried. He has been gone now 10 years, which seems impossible, but I go out there, and in all of the quiet, peace, the sea of colors with flowers everywhere, and I can quietly "talk" to Dad, there comes some peace of mind.  I may take new flowers to put out on his grave and my Grandparents. I enjoy doing that, so it helps to turn the day around also. When things are just ALL out of sorts, and I am dropping stuff, spilling, stuff, hurting badly, and everything I touch seems to turn into a huge mess, I give up, go set on the sofa with my two pups, one on each side, and chill to watch a movie. Having them beside me, and getting my thoughts off of all of the bad stuff, also puts me in a place of, "Okay now I can handle some of this stuff". Maybe I have some kind of small treat. A cookie I love, or a bite or two of a cake, pie, or something I've baked. Others I may go outside, hopefully with my gardening gloves and literally just pull the weeds, and stray grass from around my flowers. That helps to take my mind off of things.

The very best thing I can do, when it's possible, it try and just get completely away for a day or overnight. If I've had some really busy weeks, things have just been too hectic, too full of illness, doctors, medications, fighting with insurance, and there seems to be no end, then I get my Mom, and we go for at least a day visit, usually to the Casino in Oklahoma. We usually have "complimentary" rooms for a night or two. So, if time permits an overnight stay. As I had said before, being able to just totally get out of the house, of out of town, and away from all of the stuff that can just put you into overload, as soon as I pull into that Casino parking lot, and enter the doors, everything else seems so small in comparison. We are not much as far as gamblers, and usually play the "penny" slots, and my Mom likes the 25 cent slots. But, it is the people, we watch others and see how excited they are, or when you here the cheer from one of the tables, and know someone just did well, or just to relax and eat at one of their great eating places, and walk, walk and walk. The one we go to usually is now once again I believe considered the "largest casino in the world". I can attest to the fact, that a lap or two around the entire casino area in itself, not including the three huge hotels, and then the smaller one they call "The Inn", can give you all the exercise you need for a day or so. Plus there are no clocks, no windows, and with all of the sounds, lights, people, music and noises, everything else pales in comparison. I leave there still kind of in a "trance" almost. Even though it is only a day or one overnight trip, it can smooth the "edges" off of life's rigid times.

It will be interesting to read how others rid themselves of a bad day! I know WEGO Health keeps me busy, and they help to take my mind off of the "bad days" also.




















Saturday, April 25, 2015

Saturday April 25th, Wego Writers Challenge 2015 - "Wordie" #HAWMC





This was really cool!!!! I enjoyed doing it. Wow, I added quite a few words, but I can see making one huge very quickly with all of the primary words from a blog!

Saturday, April 18, 2015

What are 3 Things I am so looking forward to doing this Summer! WEGO Writers Challenge - #HAWMC April 18th, 2015

First and foremost, wearing shorts, sandals and cute Short Sleeved Shirts and Blouses! That may sound silly, but after this cold weather, with always jeans, long sleeved shirts, boots, socks, coats, and so on, I am so ready to NOT to have to put all of those on for a while. Plus I have a few new Summer tops I have bought, so I am ready to take those for a "spin"!

The 2nd activity that really seems to help me physically, mentally and emotionally is being able to get out and walk every day. That becomes my main priority and a great warm weather habit for me. So, I've already been out and about doing some of that, but with the hips and back hurting so badly, I've not been able to do as much as I want. Hopefully after the Transforminal Epidural Steroid Injection into my L-5 space vertebra, and then both hips getting injected next week, that will put me back into the physical goodness I need in order to really get out there and pound the pavement, or usually laps around a local park or my own driveway also!

I love having lots of flowers, plants, trees, and I bring almost ALL of my "indoor plants" outside for the Summer. I can usually take them out as soon as we know there will be no more surprise freezes. Then they can bask in the Summer warmth and sunshine, up until sometimes September. It depends on when our cooler weather hits, but they LOVE being outside on my front porch. Now I am talking about 70 plants or MORE that I have in my house in the winter, then they all but a few go outside in the spring and summer!!! I always giggle when I see the little tags that "NASA" puts on houseplants now when you buy them. It tells you how many "plants" per square feet in your home is best for the air. Believe me, my house is tiny, so I have way MORE than enough to "clear" the air in my home. I get bummed because there are many things that I used to love to do outside, that due to the Lupus, RA, joint replacements, Sjogren's and other health problems, my ability to do a great deal of pushing a lawn mower, doing the weed eating, bending too much, even raking, hoeing, and so much I loved to do, now is no longer feasible or advisable by my physicians. But, I can certainly do other things that are not as strenueos to the body as others.

A third thing, that I LOVE to do is put my Hummingbird Feeders out, and we both love to "bird watch" all Summer long! We have SO MANY different types of birds, and we have watched them and know so many of their "habits", why they do things a certain way, and really have an awesome time all spring, summer and into fall watching the birds. Of course the Bluejay? is the Texas "bird". But, we have loads of red birds, wrens of different kinds, finches, woodpeckers, mockingbirds, doves, black birds, and Purple Martins. There are more, but of course I can't name all. We have one pair of very "yellow" birds. They come in every year at the same time. They stay together, and usually only nest in a very thick "cedar" tree across the street. In fact, it is so "sticky" with sap, plus it has such pointed and scratchy leaves, that nothing wants to go into it, but them. I think they use that particular tree because cats, not even other birds will mess them there. We think they are a type of finch, but we find it odd that there seems to be only one pair, that come back each year. So, bird watching, we now look for the nests, and have found several nests that we've watched the little ones hatch, and how the "parents" train them and get them out of the nest within weeks. It is amazing.

I like to be able to "open up" my house and have the fresh smell of green grass just mowed, hear the birds, and just enjoy all of nature that I can soak up this time of year. I am still very much a "people" watcher, so I enjoy just watching people and see what they maybe buying or wearing this time of year. It is very interesting to see the things that others buy, and then "guess" as to watch they maybe doing or where they maybe going. When you see all of the ice chests, chips, charcoal, buns, cokes, beer and so forth, usually a picnic, a visit to one of our lakes in Texas, or on a vacation with their family.

This is also the time of the year, that I want to "rid and shed" my old self, and not just be able to put on summer clothes, but to take an "inventory" over my own home. I like to do away with things that I realize I have not used in a long time, or know for a fact just need to be done away with. As I have gotten a bit older, and as time has gone by with the chronic illnesses, pain, age part that I feel I am no longer able to take care of, like lots of knick-nacks around the house, some old clothes that we feel we just don't want to let go of, but to do an "inventory" of my home, and my life. Then I feel it is time to "spring/summer clean" out my closets, rest of the house; along with some of the "cobwebs in my mind", and from my body! Even though we always have that time of "closure" and "renewal" at the first of every New Year, to me spring and summer are also a time for renewal, to take out what we feel is "weighing" us down, and lighten up the load in our homes, minds and bodies.

I know that as I mentioned above, there are many things I used to love to do inside my home and outside, that I can no longer do, because of my chronic illnesses, joint issues, and so forth. But, I DO have MANY things I CAN still do, to take stock and move forward!

So, there are MANY things I love to do this time of year! I have to "pick and choose" now due to illnesses, and chronic pain. But, I still try my very best not to miss out on what I love the most, as I've written about above!

Happy Summer to ALL!!!









Wednesday, April 15, 2015

#HAWMC WEGO Health Writer's Challenge April 16th 2015 - "Life Goal" - Can you Achieve it ot possibly more than one -

The one goal that I've been working on now since I was about 15 years old, is to be an "author and writer" and have my books published.

That had been a goal that I had committed myself to, back then even as a teenager. I guess I really never gave myself a "time frame", but of course it is something that I want to do, and be able to see if what I write helps to make a difference in someones life.

Of course a "portion" of that goal I have already achieved. I had the honor to have not just one, but two of my books published in 2013. They came out about months from one another. Those were poetry and prose. And each time I hold one in my hand, I am so thrilled at the accomplishment I achieved.

Yet, the #1 goal even in the author and writers achievements, is to finally put all of my "life's journey" through the many things I have done, endured, and certainly will have a up close and personal look into my chronic illnesses and pain. I am working on that book, already have "named" it and got a "cover" for it done. I've gotten many of the chapters already completed, so I am on my way to hopefully completing this goal at the end of 2015 or early 2016. I just feel between my blogging, my activist, and advocacy role, and being an Ambassador, I am "giving of myself" exactly what I am supposed to be accomplishing. But, this book is what I hope to truly make others know for sure, they are not alone, they are not crazy, and all they experience it truly not "acceptable" as far as health goes, and we must try to move forward, to achieve victory over Chronic illnesses, such as "autoimmune diseases and others" and chronic pain.

I never fulfilled my greatest "desire" or goal that I had thought might happen very early in my life. That was to be a nurse. I also dreamed of being able to write my own songs, the lyrics, music, and sing them too. I knew a long time ago, I would never be the next "bright and shining" star of the music world, but I can dream about it.

Of course, I've had to "redo" my "course" several times when it comes to completing this 3rd book. I find myself taking on way too many other things that to me are very important. When I allow that to happen, then I have change my course, and get back on track of what I truly feel is the most important, which of course is this 3rd book. I have already decided there maybe yet another to follow it, and give more insight to things I dealt with in life.

        

WEGO Health Activist Writers Challenge!

 

Monday, April 13, 2015

Perfect comeback #HAWMC Wego Health Writers Challenge April 13th 2016

I have to say for the most part, I don't have many people that are "on my back" about what I do, don't do, should or should not do, when it comes to my chronic health conditions, RA, Lupus, Sjogren's, Raynauds, heart problems and the list continues.

There is one exception to that although. Mothers have a tendency to be "overprotective. It matter not if the kids are 2 years old or 52 years old. For them, a Mother is always the protector. So, my Mom I must say would be the person that I am constantly having to give a "perfect comeback" to when I want or do something, and she feels it is harmful to me, or could make my conditions worsen.

So, when the subject comes up about I should not do something such as do light yard work, or gardening. Or a good one is always how upset she gets when I must drive to Dallas to see some of the physicians there. She feels I should not "drive" that far (35 miles one way), and of course he concern is more about the high amount of traffic in the larger city, than the mileage.

My "perfect comeback" for many of her needless worries is that "if I don't drive there, or I don't do the light law work, or go wherever she feels I should not especially "alone" I ask her who will? She is 80 or going to be in August, and in all honesty, she can't even put gas in her own car. My husband is parpalegic and he is not allowed to drive at all, and would not be able to if he even thought he could. Both of my grown kids are a very long distance away. Especially my daughter. She is about 8 hours away. My son, although closer is still far enough away, that he can't simply drive down here anytime I need something, or need to go somewhere, he has his own life to deal with. We have no "friends" that can do any of these things. So, if I don't clean, cook, take us to doctor's appointments, pick up medications, make sure clothes are clean, the trash is out, and the list of course is endless, then it would not get done at all. Do I like it that way? Of course not. Before my husbands accident a year ago, he was "my caretaker". He did some of the dinner cooking, could run to the market if I was not feeling well, and even though I still did many things, when it came down to it, errands, groceries, some of the cooking, etc. he could do. Which took a huge load off of my own shoulders. Now, it is no longer that way. He can walk, but not far, and not without a cane. He is not able to drive, he can't bend over, his balance is very impaired, and so forth, so "me" is the only "person" I have to depend upon.

So, usually whenever my Mom, or anyone that knows me well enough to ask me "how I manage it", or "should I not be doing a certain thing"; my answer is usually just as I've said. "If I don't take care of all of these things, then how do they get done, and who shall be able to do them?"

For others in general, I let them know, yes, I have several very "silent" but serious illnesses. But, I do listen to my physicians who all know the massive amount of "stress" related things I have to take care of. If it comes to a place that I get too ill, then I am just on the sofa, for however long that is (last time while my husband was still in the hospital I had double pneumonia) and was down for about 8 to 10 days. I've had pneumonia again since that one, and still I was down for about 5 days. Those are the times, that some things just don't get done. So, I let people know that I am fully capable of taking care of things for the most part, and those that either feel I should "not" do what I do, or those that feel since I am doing everything, that maybe "I am not all that ill"... I give them a quick reminder about the "spoon theory" also. That is one of the best ways to also explain to people about how much you do, why you do things in the manner you do, and when that days "spoons" or whatever you may want to use as an example run over, then I may have to "borrow" from the next days. Then I "catch up" when things are smoother.

It is never easy to explain your "invisible illnesses". But, for those that truly know just how ill you are, it is never easy to explain to them, you also can't just sit down on the sofa, and allow yourself to "wallow" in pity and despair. Life moves forward, and that means I must do so also, even on those days that I may feel I just can't take another step.

Saturday, April 11, 2015

#HAWMC Saturday April 11, 2015 - A Letter to my Two "Fur-Kids" Thanking Them for Their Love and Support

Oddly enough, we hear more about this everyday. Someone critically ill, and they get some type of a pet, dog, cat, or so forth, and their condition sometimes either improves, or the pet may help to "point out" a tumor. Our pets are usually very incredible animals. They are a companion until the very end. They love unconditionally. As long as they are fed, kept safe, have good clean water, and like mine are spoiled rotten. (I always use the old saying "My pups are not rotten, they just smell that way!) I know it used to be a saying for those with kids. They can be providers of comfort, they pick up on whether their owner is not feeling well, or if something is wrong, they can sense something is out of the ordinary.

My two pups, and since they have been grown for a long time, Tazzy, who is about 10 years old now, part Pug and part Pomeranian, and my Bubba-Gump, who is about 5 years old, and he is Chi-Weenie. Part Chihuahua and part "Weenie" or Dachshund as the proper name is for them. Oddly enough, Tazzy is much more Pug than Pom. She looks and has all of the actions of being much more Puggy, than Pom. As far as Bubba, he is definitely a mixture of both. That nose is on the floor, always sniffing, looking for something else, even a crumb to eat. I call him my "crumbinator". He is always getting up any and every crumb I drop, no matter whether I am eating, or cooking/baking, he loves to sit right beside me for those crumbs or a lick of whatever I am baking, just like kids do, when I am ready to wash a bowl etc.

They offer so very much comfort to me. When I am ill enough to be on the sofa, then they are there, one on each side of me, as close as they can get, as if they were like two angels watching over me. If I am upset, they both can tell. Especially if I am crying about something, they both want to come up to me, and give me "kisses" and wipe my tears away. Even though at times, they are almost worse that kids, I just don't know how I would get through most days without them right at the door, when I walk in from errands. Or keeping me company, watching movies with me, when I am not feeling well.

When Jim spent over 3 months in the hospital last year after the wreck, they sensed that I was "alone", and it was like they were guarding me. Day and night, always listening, always watching to make sure their "Mom" was safe.
When I go to take a shower, I leave the door open a bit at the top. Usually it is Tazz, but sometimes her and Bubba will sit right there by the door of the bathroom until I am completely out of the shower, dried, dressed, and ready to come out of there.  They keep watch on me, to make sure I am okay.

No one as far as humans go, I think can show as much unconditional love and care for you than a pet. Especially dogs and many cats. They just have a way to either make you laugh when you are sad. Or they can calm you down when you are upset. If I feel something is wrong or out of whack, you can bet they sense it also. Even in the middle of the night, they can be sound asleep, and out of the many noises, from the train that the tracks are nearby, neighbors cars in and out, both of them will begin to growl very low if they hear a "sound" that is not something they usually hear.

I have to admit Bubba is "bless his heart" a bit skiddish when it comes to something loud like my vacuum cleaner. He will run and get into my husbands arms. He does not like any of my items, such as the blow dryer, the vacuum, my carpet shampooer, or anything that makes much noise. Yet, as soon as I turn it off, and are going to put it in the closet, he will run at it, bark and growl, like he was some huge watch dog. It is just too funny to watch him act like the guard of the house, once it is off and on its way to the closet.

Tazzy does silly things like chase after my "swifter mop" or my duster. She will jump, growl, try to snatch it away, anytime she sees me get those out, she is ready to play.

Bubba loves a game I play with him on marshmallows. I fix sugar free Jello often, and I usually put a few in it. He can sense those marshmallows all the way in the living room, under his blanket asleep. And before I even get those out, he knows the sound of the "jello" boxes I guess. Because as soon as I begin to pour the powdered Jello into the bowl, he comes running. He jumps up and catches them when I throw him one. He loves that so much. I don't think he really loves the marshmallows. It is all about the "game" to catch them.

So, both of them, are my rock, my foundation, my friends, my "fur kids" and they keep me going even when I feel life has truly "beaten" me down. I can walk in and see their wagging tails and those smiling faces, and all is right with my world.


 Bubba Gump (when he was about 9 weeks old)
Tazzy at about 3 years old


Jim, Tazz and Bubba Gump in about 2013


Thursday, April 9, 2015

A "Daunting Challenge in Life" WEGO Health Writers Challenge April 9th, 2015

I could start off with a couple of periods in my life, that offered up a "challenge" or actually more than one, that truly put me into the realms of being not so sure I could "last" through that time.

I had a couple of those types of circumstances at 25 years old, and having to have my face "fixed" mainly my upper lip from a 4 wheeler accident that honestly I am here today wondering why I even made it? Another story for another time.

Also, at about 40 years old, suffering through a heart attack, by myself during the very beginnings of it, as I was also going through a horribly abusive relationship, him leaving completely, and the decisions that I had to make in order to basically "stay alive". Again, another story for another time.

There was the time at 50, I spent well over 6 weeks in two hospitals, and to this day, I don't think even my doctors knew exactly why I got so ill, in such a very short amount of time, and went through at least 4 surgeries, and was told to "call my family" on one of them, because they were not sure what the outcome would be. Once more for another time.

Then, there is what happened a year ago March 26, 2014. I had been in Washington DC, with the Arthritis Foundation, and their annual "Summit on Capitol Hill" for 3 days. I had found out very close to the date it was actually going to happen, and sent in an application for a "travel grant". I figured for one, I was too late to even get anywhere as far as a travel grant, plus at the time my health had been waxing and waning with Lupus and several severe flares I had been having at that time.

Yet, as "fate" would have it, I DID get the TRAVEL GRANT, and I was accepted to actually to go Capitol Hill, face the very Congress I had always wanted to face, and tell my own story, along with the story of others. I felt if I could do that, I could make a huge difference in how the nation, the world, and those in Congress "viewed" Autoimmune and Arthritic Diseases. Thus, it was a dream come true and I was in shock for a day or so, in disbelief I got the award to go.

Yet, I did. And even up until the very wee hours of Monday morning, April 24th, 2014, I was not sure I was truly well enough to go. But, a very good physician at one of our local Urgent Care Centers, happened to have Lupus himself. So, he gave me the medications I needed, along with an injection of corticosteroids, and I was up on my feet and able to make that flight. I was elated.

My spouses Step Mom lives very near DC, and since I had never met her, plus my husband had not seen in her over 10 years, he was going to fly out on that Wednesday the 26th of March, to meet me. We were to visit and also have a vacation until the Following Sunday, before flying home. It was kind of a trip of a lifetime for both of us. I definitely loved what I saw on Capitol Hill, and had felt like the trip had really given me more hope, that what I was doing as an Ambassador, activist, and advocacy voice, truly would make a difference.

On that Wednesday, my husband was to drive to Dallas, to the DFW Airport. It was about a 65 to 70 mile drive, before flying out. I had been finished with my own items to do with the Summit around noon that day, so his Mom was to come by the Hotel and pick me up. He was to get into DC around 7PM or so.

Just about the time it was close to time for me to be picked up by my Mother in Law, my cell phone began to ring, ring, ring, and ring. I had been outside of the Hotel, it was very noisy, so I really had not heard the phone ringing, until I walked back in. After seeing the number of calls from my daughter, I rang her back right away. Her voice sounded terrified, and as she said, Mom, Jim's (my husband) been in a very severe car accident in Dallas. He is in the ER at Baylor Hospital in Dallas, and the doctors need to talk to you ASAP! I almost lost it then, but I held myself together long enough to make that phone call. As I listened to the "voice" of the doctor over the phone reading out this "LIST" of things wrong with Jim, I just sunk to the floor and was sobbing uncontrollably. So, one of the kindest men I've ever known, had been in our group during the Summit, heard me. He came over and asked about what was happening, and I asked him to please take the phone and write down what the doctor was telling him. Most ribs broken, a very severe back injury from possibly C-7 through T-7, broken shoulder, concussion, a broken leg, a whiplash, a "nick" in the Aorta, and the list continued to seem endless.

About that time, my Mother In Law, came up to tap me on the shoulder. She of course didn't know any of this at the moment, so she thought I was crying because I was happy she was there to pick me up. I had to look this woman, my Mother In Law, that I had never met until that moment, in the eyes and tell her, that her son, was in critical care, headed to ICU in Dallas due to an 18 wheel tractor trailer "running over him" in Dallas. By this time, the woman who I just owe everything to from the AF had already spoken with Chris (the man helping me on the phone with the doctor), and they had made flight arrangements to send me to Dallas within a couple of hours. I am still in such awe and have so much gratitude for them, and her. I still feel I owe them so very much, for their kindness and generosity at that moment.

Basically, when I look back on it, the next 72 hours, I believe I ran off of shock, horror, dismay, and honestly I think I had truly become "dis-associative" in order to be able to "deal" with everything that needed to be done so quickly.

Needless to say, that date was just a year ago, this past March 26th. For almost this entire year, between my own ordeal with totally losing my own teeth to Sjogren's, Jim's long and laborious recovery, the doctors, bills, medications, therapy, the 3 months he spent in the hospital... all of the integral parts of him being partially parapalegic. He had been MY CARETAKER, before the accident. NOW, and probably possibly forever, I've had to become a caretaker for him, myself and honestly often my Mom, who will be 80 years old this August.

I've had many, many people ask me how I have been able to "cope". Truthfully, I am not even sure if I have. There are days, moments, weeks, that I feel so totally trapped, others I feel we will conquer, and times I am so ill myself, like I was last year right after his accident, I came down with double pneumonia. I had to do everything in my power NOT to have to go to the hospital. The doctor really wanted me to. Yet, I just felt if I could get well at home myself, then I could get things accomplished, that I would not be able to in the hospital.

Day to day, moment to moment, hours, weeks, months and now a year later, I'm not really sure if I am "sane", or if I've become insane. I've tried to take each step in stride, hoping for a better tomorrow, week, month, and years.

Yet, I am not sure exactly what to tell anyone in this situation other than, believe in yourself, try to take care of your own health as much as possible, accept others help when they offer it, or ask if you have someone that could help with some things. Try to stand tall, know that each moment, each step forward is one more to whatever a new "normal" will be. Also, keep hope and faith, along with asking others for prayers too, can be a huge help to be able to accept what has happened. You must finally in one way or the other truly "deal" with the issue, and then you can work on all of the other stuff.

Plus just that. Come to your own place that you must, you have to accept, "normal" as you knew it will never be again. You must find a "new normal"... and sometimes possibly several of "new normals" through out the process....

Rhia Steele April 9th 2015