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, November 4, 2016

Day 3 - of WEGO Health Blog/Writer's Challenge - A Favorite Quote and why it moves me #HAWMC

Day 3 WEGO Health Challenge - A Favorite Quote and Why it Moves Me





My "favorite" quote is actually one that comes from myself. "If YOU do NOTHING! Then "NOTHING" gets done!"


I've come to find out after many years of feeling as if I could depend on someone else to do as they said they would, or help me out when I needed help, that I was going to be either, upset, disappointed, feel as if no one cared, have my feelings hurt, and after living with all of those "harsh feelings and emotions" what I "needed done" never got done. The only thing that came out of it, is me feeling lousy. 

So, I am truly a stubborn person when it comes to "asking" anyone for help. Not that I feel someone else can't do it just as well as I can. I am not "narcissistic" per se'. I have been through relationships, whether serious or friends, at work, at home, business, serious, or not serious, the only way, I know for sure, something that truly needs to get finished, and have the job done, is if I do it, and try to not "depend" on anyone else to help get it done. 


Actually, I've been going through these circumstances now for months. My Mom has always depended upon me. Bless her heart, after my Dad passed away in 2005, I, being an only child had to move back to Texas from Seattle, because she could not even put gas in her own car. Much less figure out bills, investments and all that needed to be taken care of. There were times over the past 11 years that "someone else" would offer to do this, that or the other" to help her or us out. Then when it came that time to do whatever it was, guess what? I was left with ME having to take responsibility. That has been really my entire life's story. If I want it done, and to know it was taken care of, I must just go ahead and do it. My Mom after being seriously ill only the first 6 months of this year with what we feel was "Lewy Bodies Dementia" passed away on June 9th 2016. I knew even though at the time I needed surgeries that had been put off, that I sprained both ankles severely the day of her visitation. I was in the middle of a horrible Lupus flare. Yet, I knew I had no choice but to make the arrangements and get things taken care of. No one else, even though some offered would get down to the "brass tacks" as the saying goes and get it done.


So, that was and is still my life. If I want something done or need it done, then my saying always holds true, "IF you do NOTHING, then "NOTHING" gets done!"

Day 2 - WEGO Health Challenge BLOGS - #HAWMC - "How do we blog?" Inspiration, jus start writing, and so forth

#HAWMC Day 2 - of WEGO Health's Blog/Writer's Challenge





Usually I begin by something "hitting me". Like a post on a Facebook page, or something I hear on the news. Sometimes it is a personal issue that I am going through. I also have what I call " a voice".

I maybe sitting here doing something completely different, and the subject for a blog hits me, and I begin writing. My blogs, posts on Facebook, even E-mails tend to be "lengthy". Anyone who has read an email from me, or sees my blogs, or posts anywhere, knows to be ready to spend several minutes reading. I tend to "explain" in detail what I am saying, where it is coming from, why I feel it is necessary that I "tell" whatever that subject is. And until I feel that I've "said it all" on that one subject, I write. I am really bad about not even making "paragraphs". I've had to change that lately. I've come to realize is someone sees a very lengthy post, with no "breaks" in between, it can be confusing. So, I've began making sure I break it the post, blog, email or whatever it is, so it does not seem so long and so tedious.

I also tend to "write out" everything. In other words, if I am going to say, "I'm going to town", I write it out literally, "I am going to town". Oddly enough, I probably do not speak that way, when speaking, but when I am writing, I usually type it all out, without using other forms, like "I'm, I've, even numbers, I tend to type out ONE, Three, and so forth. Sometimes the reason I type numbers out in spelling them, is because I want to "emphasize" that particular number, so rather than 3 little chicks. I may want to write, "THREE Little chicks". So, by spelling the numbers out, I can USE them for emphasis in a sentence, or for some reason.

I know that typing in "ALL CAPS" is almost like "screaming" at someone. I find myself using "CAPS" but not so much as to be screaming in the readers face, but really showing that part, is coming from "deep inside" and it is crucial to understand how important that sentence, or portion of the blog, the post, and so on are to me. So, if you see a post of mine and something is in ALL CAPS, it is because I really want to make that stand out to who reads it.

Actually, I DISLIKE "editing". I know that sounds silly, but I try and make sure I am "saying" what I need to say, as I am writing it. So, I may read over a sentence or two as I finish them. But, I "spell check" as I write, so I give it a once over for spelling errors, then most of the time I hit the "send" button.

I am also not that great at "coming back" to a post that I have written, and "add" to it. If I know for sure, I want to say more on that subject, I usually make a new "Part 2" post about it, but once I am through with what I have said, for the most part, I don't edit and add to a post. Now, I may go in and fix a link, add a color, or a photo. But, if I want to say MORE, then another "post" will come and I add it as another "Part" of the original.

I was always an excellent speller in school. I won spelling bee's, had all 100's on my spelling tests, so when I am typing and writing, and a word is misspelled or I cannot for some reason spell it at that moment correctly, it will drive me CRAZY! I will go back and try to spell it myself correctly several times, without looking it up. There are times, I finally give in, and go do a search to spell it, and often as I am typing it to look up the correct spelling, then I do spell it correctly during my "search". I have to laugh and blame it on the "Lupus fog", because most certainly my "age" could not be a factor.

Day 1 - #HAWMC - WEGO- Health 30 Day Blog Challenge - What drives us to BLOG!? (running a bit behind)

WEGO Health Blog/Writer's Challenge Day 1 #HAWMC


I've been a "driven" writer since I was abut 13 years old. I began writing poetry back then, and a few short stories. I was even the "editorial" writer for our High School Newspaper. I took on a few tough subjects, from "Holes in our student parking area", to giving our students more of a challenge when it came to subject matter and getting us ready for what we would face in the real world; after high school and college.

I continued to write in "handwritten" form, before computers. I have notebook after notebook filled with my writing. I have most of them still with me, and have been able to put much of the material on the computer.

At the age of 14, I had a neighbor who was a RN at our local hospital. I seemed to "soak up" everything that was "medical" in nature. I volunteered as a "Candy Volunteer, I guess then called a "striper" and I stood beside her every chance I had spending all of my free hours learning about the medical world. From watching them deliver babies, to taking care of those babies and Moms, and learning at that time how to "pack instrument" packs, because back then most instruments were not "disposable". We had certain instruments for certain surgeries that had to be cleaned, disinfected, wrapped together, then put in an "autoclave" that sterilized them further to be used in surgeries.

From there, my mind was made up, I would be in the medical field. Of course things change, and I got out of high school early, wanted to go to work, and married young. We had my son 2 years later, but by the time I was about 22, I knew that is not what I wanted for my life. I went on to divorce my 1st husband, and then was a single Mom, with bills to pay, and went to work at a bank in Dallas. Still I was restless because I was not doing what I felt was my calling, my heart's work, and what I was supposed to be doing in my time here. I left the bank, remarried a couple of years later, got some college under my belt, and went to work in a hospital, but in the business office.

Those 6 years there made me know even more that I wanted to find a way to be in the medical field, more hands on, and not behind a desk collecting money from sick people.
Yet, again, even after having an offer from the hospital for them to fully pay for me to go to college and get my LVN degree, at that time, I had two younger kids in school, and was unable to go to school full time, and support my family also. Oddly, enough, I went ahead and took the "entrance exam" to get into the nursing program and passed it as #1! That made it even more difficult for me to pass up the opportunity. I not only had the drive, I had the offer to pay for my classes, then work for that hospital for a year to "pay back" a portion of my college. Then I could have went any direction I pleased. Yet, family came first, and with a heavy heart I declined that opportunity.

I was friends with a woman that was the head of nursing there, and there were days she was almost unable to walk. Her feet would hurt so badly, she could barely stand on them. I found out she had Rheumatoid Arthritis. That and another young woman that worked in the hospital pharmacy, had a type of "stomach issue" autoimmune in nature, that there was little known about, much less on how to treat it, and give her the life back she wanted.

All those years I continued to fill notebook after notebook of my writing and poetry. That was the one "steady" in my life, my writing. I did go to college, and took accounting classes and business classes, and almost had my degree in business. I was struck with Migraines, that were horrific. Over the years they would make me so ill, I would miss work for days at a time. I never "hid" that I had the headaches, but I could not predict when and how long they would come on and last. In fact, I lost several jobs either having to resign jobs, due to missing so much work because of the headaches, and other health issues, including needing surgery on several joints. I had painful problems with my knees, shoulders, hands, and elbows. Again, missing work for surgeries on painful joints, in my 30's that the doctors could not really explain.

I had went to a "pain specialist" long before they were really heard about, mainly to see if he could help the migraines. I had injections into the occiptal nerves in my neck, was hospitalized, had every test available, yet no doctor could put the pieces together as to what was "wrong" with me.

At 40 years old I was an avid exerciser, daily, I ate only healthy foods, watched every pound of my weight, and did everything "right" for my health. Yet on January 8th 2001, I suffered a heart attack.

After that, doctors began "speculating" what was medically wrong, and a huge amount of "stress" was a portion of it. My 2nd marriage although lasted 15 years, put me in a horrific "trauma" day after day, and that stress my doctors seemed to feel was what partially caused my MI at such an early age.

I began to have tests, be able to see better and more advanced physicians, and around the age of 45 I had a young PCP, who finally put the pieces together, along with the proper blood work and finally was open minded enough, to "listen" to me. He found out that I had some "type of autoimmune issue"(s). He sent me directly to a Rheumatologist, who ran more tests, and determined I had MCTD, or possibly Lupus, RA, Sjogrens' & Raynauds.

I had already discovered a whole new era in "writing". Online communities, of people such as I, and that my "writing" could really be helpful through these communities, through my own "blogging" (at the time I really did not even understand what a blog was) and that even though I never was able to go into the medical field to help people on a plane such as a nurse, doctor, or in research. I COULD bring my story as well as a great deal of information to so many others such as myself, that were severely in need of answers, of the questions to ask their doctors, of information on new medications, and through other telling them their own stories.

Thus, my writing and medical "knowledge" finally came together about 10 years ago, and I began to "help" others through my own frustrations and information about the diseases they had been told they had, but were frightened to even ask their physicians for more information.

So, out of my own Chronic Pain, many surgeries, dealing with several autoimmune illnesses, tests and knowledge, was born my own blog, and my own way of helping those who are in such need for someone "listening" and truly understanding their problems.

Tuesday, November 1, 2016

Cure Click - More Clinical Trials!



Urinary Incontinence from Multiple Sclerosis or Spinal Cord Injury


Do you or a loved one have urinary #incontinence due to #MS or #SpinalCordInjury? A new research study is testing a potential treatment for those who have failed oral medications. Learn more. http://curec.lk/2eJlaCs







Pediatric ADHD

 Child with #ADHD acting out? Local studies enrolling now. Payment up to $700. Act now! http://curec.lk/2f2lBIY






Trial for Dementia with Lewy Bodies

 Do you have #LewyBodyDementia? A New investigational drug trial is enrolling now. Take the pre-screener now. #Dementia http://curec.lk/2e1mP5t





Gastroesophageal Reflux Disease (GERD)


Can't find #reflux relief? #GERD studies enrolling now. No-cost study meds or placebo. Payment varies by study up to $850 if you qualify. Learn more. http://curec.lk/2dw9oHn

 

 

Recruitment for Post-Shingles Pain Study

 

Nerve pain after #shingles? No-cost study medication for post-shingles pain. Enroll today. http://curec.lk/2cmiXxc





 

 

 

 

Chronic Lymphocytic Leukemia (CLL)


 If you or your loved one has #CLL, consider joining a clinical trial. A new #ClinicalTrial is enrolling now. There is no placebo. Click to learn more and see if you qualify. http://curec.lk/2bF6WTi

 

 

 





Tuesday, October 25, 2016

Dealing with Daily "Issues" that for those who are NOT ILL, can deal with them fine! Take someone with RA, Lupus, Joint Issues and they are Major problems! Here is my Story!

I would have to write a BOOK to tell all I've been through this past few days. First of all, my pup, Bub's who is highly allergic to any type of "bite"... was clawing and scratching himself yet I could NOT find one flea, have not seen a flea, and had been driving myself crazy. He has always had skin issues, especially being hyper-sensetive and itching... and he was whining, crawling up in my lap, and even when I asked him"Bub's are you itchy?" - he would head for the kitchen so I would give him a Benadryl. Anyway, I FINALLY got him where I could really take a good look on Friday, and found a bit of "flea dirt' (which honestly I had not known about) on his bottom...where I knew any flea loves to hide... yet still NO flea's! 

So, I sprayed him, sprayed the other one down Peanut, then salted and and put the washing type of Borax own my rugs, and let that sit. That was after spraying the outside of the house, getting more granules and broadcasting them in the back, front and everywhere I could outside. I sprayed down everything in the house with "Flea Enforcer" which a few years ago, worked like a charm, and you can spray it on even your bed, pillows, sofa etc.... so, I got some of that done, had to leave the salt and Borax to sit for awhile, and went to run errands. I was SUPPOSED TO LEAVE YESTERDAY FOR THE CASINO! 

So, I as "trying" to get ready for that. I had a million things to do, in the yard, in the house, running errands (this was Saturday) and my "light" to tell me my tires were "under inflated" came on. It does that when the weather changes from hot to cooler, but I checked them and they needed air. But, it was already late in the afternoon, I was exhausted, needed to get home to vacuum up that stuff, pack my clothes, so I decided to wait and I would air up the tires Sunday afternoon. So, I get up Sunday, preparing my meds, my clothes, deciding what to wear, and also when to leave to try and "avoid" some of the rush hour traffic Monday morning in Dallas, headed to Winstar. So, I go and get me some quarters (now it is like 1.00 OR MORE for air) and I went to air them where I always do... downtown, at the station across the street fro the automated car wash. Theirs is on the side, and not a lot of traffic etc... so I can park where I can be as up close as I can be... So I get all of them stem covers off, get my quarters ready, and get the line ready to pull, and it comes on, and I TRIED AND TRIED AND TRIED, but my arms and especially HANDS are so stiff, swollen, and I guess weak from the RA and all the trouble I've been having -

 I TRIED THREE TIMES (3.00) and I STILL DID NOT GET THOSE TIRES AIRED UP! By then I was upset, hurting worse than ever, pissed, off (AND THIS GUY CIRCLED THE STATION 4 TIMES, WATCHING ME, YET NEVER OFFERED ANY HELP! THE FREAKING JERK!) Well, It is Sunday, I have no clue where to go to have anyone put air in the tires, and hell now you cannot get anyone to do it, even when I had my oil changed, I was pissed because i ASKED HIM TO AIR THEM UP, MY LIGHT WAS ON BACK THEN) I GET IN THE Car and the LIGHT IS ON, HE NEVER put the right amount of air in them, they take 35PSI IN THE FRONT AND 233 PSI IN THE BACK! I know I've done it myself and hell been doing my own tire airing up for YEARS AND YEARS! Yet, I just could not pull that damned line, hold it up to the stem tightly enough, and the push the nozzle to let the air in.... my hands, wrists, even neck and shoulders just could not let me! SO, I GO HOME IN TEARS, JUST SOBBING.... mad, and so upset, because I would NOT drive the car to Winstar without the tires aired up correctly. I wanted to leave EARLY Monday morning about 6AM or so, so I was NOT going to find anyone to help me and besides by then I did not want to hassle with the entire ordeal. SO, I wound up COMING HOME, CALLING AND CANCELING MY RESERVATION AGAIN!

 I GOT HOME DID THE vacuuming, this was already 5PM or after by the time I finished all of that, and made me and the pups some dinner, and watched a movie. So, that meant NO TRIP again... I've NOT BEEN OUT OF ENNIS SINCE BEFORE MY MOM GOT SICK IN JANUARY! I've not had ONE break, all I have done, is do paperwork (which is still not finished) paint, clean, cut down tree limbs, spend BUCKS to get rid of bees, get stung by those damned wasps, and do any and everything else, but I STILL HAVE NOT HAD EVEN ONE DAMNED AFTERNOON OF A BREAK! MY NECK IS BAD! I need surgery and now, after hurting my lower back again the time Mom got home from the hospital my lower back is always killing me... 

YES, I GO AHEAD AND CUT TREE LIMBS, AND DO EVERYTHING ELSE, HURTING OR NOT, BECAUSE HOW THE HELL DOES IT GET DONE, IF I DON'T DO IT???? If I allowed myself, I would sit on that sofa, and let myself "wallow" in all of the pain, the upset feelings, the hurt, the guilt, and the MAD PLACE THAT I AM over what I TOLD MY MOM SHE WOULD CAUSE, BEFORE SHE PASSED AWAY! NOW she is GONE, AND GUESS WHAT??? Exactly WHAT I TRIED TO WARN HER ABOUT IS HAPPENING! IT IS DAMNED IF I DO, AND DAMNED IF I DON'T.... I am too tired, hurting too badly, and need a freaking moment that I do not have to DEAL WITH CRAP! So, that is why I've not been "online".... I've not felt like it and not only that I HAVE NOT HAD EVEN A MOMENT TO BREATHE... I HAD TO GO, BUY A 12 VOLT Portable Air "compressor".... it runs off of your car, and I bought that yesterday when I found it in Wal-Mart. 

Although I still had to mess with it, and dammit, I know better, I've got to go and buy some stem covers, I always wind up dropping them... BUT I GOT MY TIRES AIRED UP CORRECTLY YESTERDAY AFTERNOON AND THE LIGHT IS NOW OFF! Plus NO MORE do I have to worry about pulling on a damned air hose, I can air my tires up anywhere.... It is small and fits right into my hatchback, with my car cleaning stuff... so PROBLEM SOLVED FINALLY!