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!

Thank you Extended Thoughts, Gratitude, Life, Lupus,RA, & All of the Health Issues In between...

First of all, I want to extend a very heartfelt Thank You, in behalf of myself, and my family for all of the support, thoughts, prayers, and the many that lifted myself, Mom and family UP, while she went on to be in a much better place last Thursday morning.


It was serene and surreal - both - me there with her, holding her tiny hand in mine, as I "knew" like I said I would that "time" was near, and she was ready to go "home" to be with my Dad, and all of the loved ones, that had passed away before her. As I sang several hymns to her, all of which were songs that she so loved to hear my Dad sing, and did here him sing, many, many times over, and I finished the last of the old hymn "Pearly White City", Mom drew one last breath, and that was it, and it goes "Tis' finished".

There was such a mixed emotion there just the two of us, so silent, yet the moment spoke in volumes that I knew she was at peace, no more pain, no more suffering, no more of laying there, having no quality of life... and I had lost not just my Mom, but someone I had grown very close to over the past 10 years in different ways, and the thoughts of all of our laughs, fears, talks, trips to the Winstar over the years, and all came flooding over me, like some of the floods we have experienced as of late, yet much in a good way.

I suddenly felt "peace" also. I suddenly in my heart of hearts knew, that all we had "endured" over the past at least 8 to 9 months and really much longer, now was over, and we could both rest in the fact, that she moved on to be "better" and my own "job" here on Earth is far from finished.

Not just "things" to do because of her passing, but LIFE to live, that I know now was waiting for this to happen. NOW, is when after things are settled that I shall finish my 3rd book, because "her story" shall be a part of that book.

I want to once again extend such a thank you to our Physician's Choice Home Health Care here in Ennis, as well as our Family First Hospice. All of them, especially that last week with the Hospice people would been so much more difficult had it not been for them. They look this horrible situation, and made it a bit easier to bear.


I am in gratitude of Keever's Funeral Home, Father John from the St. John's Catholic Church here in Ennis also, the Ennis Flower Shop who did such a beautiful job on the casket spray, and everyone else who sent their wishes, flowers, donations, and put their love and arms around my family, as we dealt with and continue to deal with a very sudden loss.

As the days move forward I will now be able to begin another realm and branch of my journey here, in my writing, and in my life. Of course there are still many things on the "list" of to do's, yet as I do those, I will now be able to get more back into my own writing, and pray that my "voice" shall once again speak to me in order for me to complete my 3rd book, and publish it.


I also have more advocacy work to do, since Alzheiemer's/Dementia, especially Lewey Bodies Dementia, will become a huge part of my advocacy work....

I wanted to catch each of you up, and let you know what is happening, give you some links also, and again tell you how much I so appreciate your reading my posts, and continuing to follow this journey we call life.....

http://www.jekeevermortuary.com/home/index.cfm/obituaries/view/fh_id/13137/id/3742850

http://www.physicianschoicehomecare.com/

http://www.familyfirsthospice.com/contactus.aspx

   http://www.alz.org/

http://www.alzfdn.org/?

http://www.alzquilt.org/

#invisibleillness Blog Post - and talking about the "fight" of our Life!

"Invisible Illness"? A term to some that would or may not make any sense. Usually for the most part, if you have an "ailment",  surgery, are ill with bronchitis, even things such as diabetes, people tend to "see" outwardly some signs of "illness"... a cold, the flu, even something such as hypertension, high blood pressure, will bring some outward visions maybe the person's face tends to be red, or they may show signs of edema, swelling.

Obesity, is a disease. Of course that, or anorexia, those ailments are also able to be seen.

Someone who has a loss of use of their limbs, such as legs, arms, or have an injury severe enough to require a cane, or a walker or wheelchair... all that can be seen....


Yet, when you "see" a person with Rheumatoid Arthritis, Osteoarthritis, Lupus, Chronic IBS, Pernicious Anemia, MS - at some levels, Mysethiana Gravis, Sjogren's, or chronic types of nerve pain, migraines, and the list goes on and on of true illnesses, that are often not "witnessed" by the outside world. Chronic Pain, which can result in so many, many 100's of different ways, may not absolutely "show" to the outside world.

So, when you see a person parking in a handicapped zone, and they have a placard, even though they may "appear" to be "fit as a fiddle" - never assume that is so. Some days, I may not use mine, or feel like I don't need to. Other days, it is almost imperative for me to try to park as closely as possible, especially is a large store, such as Wally World, Beall's, Penney's and you know the rest. I maybe in so much pain, or feel so weak, or so fatigued, it is all I can do to go in, get exactly what I need, and get out. But, outwardly someone passing by, may not see that in me.

I am a recent new member of a church. Some people there know me, or have made it a point to get to know me, thus they can "get" some reasons why I may appear to look one way yet feel totally another.


I've found that even with my own physicians... if I "remotely" go in for a follow up visit, especially with the Lupus, RA and so on, I had better NOT "appear" all that "better"... in other words, you walk in and even though that physician may have been seeing you for years, if you come in dressed in a nice dress, or nice jeans and shirt, have makeup on, and your hair in place... and jewelry on, some see that as meaning you are "okay"... which can be as far from WRONG as possible!!!!

99% of the time I go to my doctors, whether the Rheumatologist, my pain doctor, my PCP, my heart doctor or whomever, I make sure I DO NOT appear like "nothing" is wrong. Now, that does not mean go in appearing as if you are on "death's threshold"unless for real you DO feel that badly, and believe me there are times I do look it and feel it... but if I am having issues that I feel I want them to really HEAR and LISTEN to me, then I dress more casual, usually forgo most of the makeup, and not come in joking with the staff, and laughing it up.... because no matter what "medical records" show,  that "appearance" is what can make all the difference in whether your true concerns, pain, illness, problems are truly addressed or are more brushed off due to the fact you appear to be doing fine....


In fact, I know that most of us say, "Hey, how are you"???? or we are asked that in any setting and especially in the doctors office. I've come to the place that I say, well not really as well as I want to be, and that is one of my main reasons for being here, something is wrong, I am in too much pain or this and that are swollen, or whatever all of the symptoms that have been going on, I make sure I totally explain that, and I do NOT any longer, give that "oh, I am doing okay".....

Plus with "invisible illness(es), they are often just that "invisible"... and I always go with a very long list, of symptom, especially new things, of my mental, emotional and physical shape.... If I have heard about a new medication, or something that sounds as if it could be right for my situation, that I put notes down and I go through each and every one of them explaining, what it is or is not, how long, when it happens, what type of pain it is, and as you can tell, I try to MAKE any specialists, doctors, radiologists... whomever is doing something on me that moment... I get all of the information possible, and I ALWAYS ASK for a copy of the "test", lab, dr. findings, surgery notes, and so forth... I get it all, and I keep it all... that way I have PROOF that this, that or the other happened or did not happen so I can keep up with it, and also take it to other physicians that may need to see me in the future...


The EXTREMELY REMORSEFUL thing about having a/AN INVISIBLE ILLNESS(S)... is that YOU FEEL ABSOLUTELY INVISIBLE YOURSELF!!!!

There are so many times in my life, whether it be at a doctor, having surgery, going through one thing of the other... is that I feel as if I am just a "ghost", another "body" for them to work on... and that the "person" that is there, very real, with every breath you take it is like they could care less what you are feeling, thinking, going through... it is all MONEY, POWER AND GREED!!!! I CANNOT SAY how many times I've repeated those words as of lately.... MONEY, POWER AND GREED!! Where is ANY Sanctity for the HUMAN BEING AND HUMAN LIFE ANYMORE????

Lots of thoughts and prayers needed now...

I can't really go into lots of details at the moment, but there are some really life changing things going on at this time for myself, and my family.

When you are chronically ill, and or in chronic pain... at the first you may never have the thought about HOW MUCH your life can change. Then as the doctors visits, medications, tests, surgeries, fatigue.... and so many things change, physically, emotionally, mentally... all aspects of what used to be "normal"... can be gone within a breath's space...

Then you have two people, one that has been "healthier" that could stand in for the other, when illness or flares hit... and all of a sudden that person is also either as ill as you, or even worse. So, that is when nothing is the same... you may think things will improve, we will find a "new normal".... and it just takes time, patience, tenacity... will power, respect, and love to finally find whatever can go on in the future. Yet, a "dam" appears... the river of life that you felt was so awesome, suddenly turns into a raging force, driving one in one direction, a fork you may say, and the other, suddenly winds up in the opposite direction.... and that is when "trying to piece back your life" can either be not really going to happen, might happen, or usually you finally KNOW, things must change... and change drastically, for both of your sakes...

As I said, I can't go into lots of details, and for now, I think those that do know me, and have an understanding of all of the drama, the illnesses, surgeries, doctors, and pain... from the physical, to the emotional, mental, and daily life - has all bundled up into a huge knot, and you just cannot manage to go on that way.


We are NEVER guaranteed anything but to "live" and then to "die".... in between things can be smooth, even, rocky, a landslide, and so often we are left wondering why the hell this happened? All of the questions, why am I being punished? Am I a "bad" person? Why can't I just have a break? Why can't something be "easy" for a change????

None of us know that answer. And throughout my entire life, most EVERYTHING has been a challenge. There are not many things for me, that have came "easy"... I worked, fought, crawled up the mountain, as the stones dug into my knees.... and slid back down again.... and I do know that only through FAITH and HOPE can I continue to one step at a time, moment by moment, then hour by hour, day by day.... week by week... and then months... years... and one day when I am no longer on this Earth... then all shall be revealed.


So, I WILL continue on with my 3rd book... and hope to finish it up on schedule by the end of the year. I WILL continue to be a voice, activist, advocate, and ambassador...
Lord willing, and my health continue to half way act right.... and hopefully the brain fog, pain and suffering may hopefully have something done about soon... either by surgery, by new medications... and so forth...

I shall give more information as the next days go along... so PLEASE continue to come and join in on my blog... and for those who have always been here to support, encourage, provide strength, faith, and prayers... I am so very grateful for all of you....

Sharing" Anothers Bloggers Post - and the Pain that we often fall short of talking about... that relentless endless, intractable PAIN

The link to the post is at :

https://www.creakyjoints.org/no-good-lessons-learned-hitting-ra-pains-rock-bottom/

It is from a "Creaky Joints" post...

RA pain’s rock bottom: NOT a ‘pain made me a better person’ story

 

and it is by: 

Kat Macfarlane

 

 I was so truly amazed with this woman's "honesty" about this type of pain. As I "crawl" through some of the exact same pain with my hips and lower back, and legs, I just want to scream, cry, shout, cuss, say everything my head is thinking, yet not want to offend anyone. So, I don't walk outside and shout, dammit the hell I HURT!! WHY Can't this just go away??? Why the hell do I have to live day after freaking day like this...... and so on... it is MUCH MORE Obscene is my mind for sure...