Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts

Saturday, October 27, 2018

Colonoscopy and Endoscopy - Just another procedure to put us through....n Life with Chronic Pain, RA, Lupus & chronic illness

Going through the Ordeal to get Ready for an Endoscopy and Colonoscopy!


Also Barrett's which I have and my Anemia is getting worse every 3 months, and my Parathyroid Labs are all "off" also....


So, I started to see the surgeon on Thursday afternoon, to see about scheduling that endoscopy and colonoscopy... and about the time I was leaving the house, I "felt" one of those drenching sweats coming on, plus they were supposed to put the holter monitor on me for 24 hours while I was there... I almost called and cancelled, but decided I would "try" to at least get into the surgeon... 

and wait on the monitor... because the leads will not stick on my skin if I am having one of those horrible drenching cold sweats... so the doctor was running over an hour late! I knew I was getting worse, but fortunately it was not a terribly bad one, but I did put off the monitor and told them I would try next week... and I did get in, so I have the endoscopy and colonoscopy on November the 14th!!! And now the way they "clean out" your digestive tract is almost silly.... 

rather than drink that "lime stuff" like you used to, you get 2 32 ounce bottles of Gatorade or Pedialyte... 2 bottles of "Miralax"... and 5 Ducolax pills... and mix the Miralax in the Gatorade and drink it like a glass every 10 minutes until you are finished with it, this is at noon and you are "fasting" anyway, with jello, etc the whole day before", and then at 6PM you drink the other Gatorade and Miralax and I think in between take those Dulolax pills!!!! 

Good Lord I hope that does not make me sick... that is a lot of Gatorade, and I guess it helps to "hydrate" you, rather than used to, you would be almost dehydrated doing it the old way.... anyway, I just hope they can do it early in the morning on the 14th and get it over with... I've got to get hold of my son, and see if he can get off work to take me... of course they put you to sleep so you have to have someone to drive you home after it's done.... I still have not heard from the Endocrinologist... but I guess I will call myself and try to schedule an appt if I don't hear from them by early next week....


Wednesday, August 8, 2018

Our "fur-babies" & just how critical they are many of us our Live's, chronically ill, unable to get out, or have little or no family nor friends


I realize many people in the nation and around the globe have "fur-babies"... I know there are a great deal of us that think of them, as a family member, & crucial to our daily living.

When you get a puppy, kitten, or any type of animal that you can "bond" with, that bond can be so tight that either "you" or your "Fur-kid" can be severely upset for one or the other to not be around.

I know for me, if I didn't have my two "fur-babies" I don't think I would survive with all of the health problems, loss of two other precious pups, so much pain, & the "difficulty" in life to survive all we go through.

Those with pets, know they love unconditionally, they are loyal to the "inth" degree, and they treasure YOU as much as you treasure THEM!

It even makes me upset just to have to go away for a day and night, and them not be able to go... I worry like it was another "human" family member, they are who keep me smiling when I want to "pitch life" down the drain and say to hell with all of it.

So, I "lost" two of the most precious pups of my entire life... my dearest Tazzy, my Pug that I got for a Christmas present and she was only about 7 weeks old when I could finally pick her up. She was everything to me, no matter how sick, how much pain I had, how things seemed just out of kilter, there Tazz was to make me smile... Then several years later, I decided to add a 2nd fur baby to my home. So, Bubba Gump, (Bub's as I called him) who was part "doxie" and part "chiquawa" but I didn't see much of the 2nd part in him... they called him a "Chi-weenie" but the "Chi" was not there in looks. Anyway, he also came along at about 6 weeks old, so tiny he could sit here on my desk with me. Tazz was about 6 almost 7 years old, when one morning I noticed she was "acting odd". From the time I got her, about 10 times during her entire life she would get a "seizure like" episode, and would shake, shiver, get tired, and we had to hold her, talk to her, and in 15 minutes she would usually calm down, and be fine and ready to play. One morning, she just acted like she didn't have an energy to even walk to the kitchen. I went to look for her, since she was not coming when I called her, and she was laying beside her water bowl, so weak I had to literally help her put her head up enough to get some water. I almost had a heart attack.... I went into almost the worst panic attack I had ever had, and immediately picked her up, wrapped her up and rushed to our Vet, who thank goodness is only about 3 blocks from me... they took blood work, and Tazzy, just was limp and weak... and my heart broke to see her like that... I will never, never forget that feeling I had... so the Vet said she felt like taking her home with me was the best idea and then bring her back the next morning for more tests... Well, I think the Vet and I both knew Tazz would not go to the Vet the next morning....

It's taken me a while to even try to finish and post this. I still feel the pain from such a great loss, of my two fur-babies. Those that don't have pets, may not understand the way they become a family member. When you live alone, or don't have much family, or many friends around, that one or more pet, whether it be a dog, cat, or others, are what keep you going. The days when the pain is severe or any number of symptoms arise, I can look down at Bella and Peanut, and know that I am "needed and loved unconditionally by those two small tiny fur-kids....

I wanted to get this published, but I will close this one now, and do another in a few days.

Wednesday, November 8, 2017

Trying to "find a new path" and Easier "lifestyle" for me, because i simply am not able to do all the stuff around my house I need to...

Lots going on, and much of it to do with my house, the lease on my car, and trying to "cut down" on my stress level, on my expenses, and get myself where I can spend more of my time doing the things I want to do, rather than drive myself insane with worry over "fixing" something every week at my house, and my own health, and pouring money into it that it is getting out of hand..

I never thought I would "want to live" in an apartment agai, BUT with the ways things are, the expenses of trying to keep a house "together", painting, roofs, inside work, floors, putting walls up in the laundry room, MANY trees that either need to be cut down or trimmed, and more.., the list is endless, and I have to face the fact I can no longer, "hang ceiling fans" and stand on a ladder to paint, or buff hardwood floors, fix a dryer again that has gone out, try to "fix" what the "scam artist" made a mess of with the repair and paint "job" he was "supposed to do on the outside of my house, and again, everyday there seems to be more, that keeps me away from my writing, my blog, my advocacy work, spending time doing the things I "want" to do, rather than a never ending realm of "repairs"..... so after the holidays, I am selling my home, and moving probably closer to my daughter around the Corpus Christi area, in an apartment, where I am no longer having to do ALL OF THE UPKEEP, MAINTENANCE, AND EXPENSE OF LAWNS, AND SUCH!!!


Well Hell, Just AS I THOUGHT! The dryer had the thermostat for some reason "short out" I think by the looks of it... so it (I can see) it "burned one of the tiny connections on the heating element... the element looks "okay" but with that piece damaged, I didn't take a chance. I ordered the ENTIRE ORDEAL, thermostat, the thermo fuse, heating element, and then the wires that go onto the thermostat and heating element. This is just about what happened before. I looked it up and it was in mid 2013 that we replaced all of that before. 

Thank goodness for AMAZON and keeping up with orders. I could go back and see exactly what I ordered then and so I knew exactly what I needed!!! It does piss me off that in 4 years it has gone out again, BUT when I MOVE, if the apartment does NOT have a washer and dryer, I am leaving mine to go with the house, or selling them and will buy a new washer and dryer. I bought them 2005, or early 2006 when we first moved back to Ennis, so they have served their purpose. We did have to replace the parts before 4 years ago just like this in the dryer and then I know there was also the front "button" in the door that broke, and we replaced that, and I "think" something on the washer had also gone bad at one time and we replaced it also.,, SO ON THIS DREARY VERY COOL, RAINY CRAPPY DAY, I'VE been pulling the back off my dryer in that very TINY damned laundry room that has NO light worth a damned, so I was trying to hold the flashlight and the the damned hex screws loose from the back of the dryer, LOL..."Tis done and I've put the order in for the parts, which will come in on Friday! But, of course I may not get them early enough to put it back together until Saturday... 

I was SUPPOSED TO ONCE AGAIN GO TO THE CASINO ON SUNDAY! But, now I am not sure if I will, Bella has surgery next Wednesday bless her little heart...I had to postpone it from this past Monday, I've been under the weather with a headache, sore throat, very hoarse, and my right shoulder and elbow are about to drive me nuts. I guess I've been using it painting outside and putting down that edging that I have to use a rubber mallet to drive the stakes into the ground that hold that edging down... plus cut more tree branches down and still need many more. but today I "think" I am just about through for the day..., I got up again very, very early and didn't sleep worth a damned, and I am exhausted honestly..  it seems to be non stop worry over this house, the yard, how many trees need to either be trimmed or cut down, and I am just no longer able to do even with the "cordless" mower, weed eater, chain saw, and so on...

If my neck and shoulder specialist "knew" what I've been doing he would probably have a cow! I am really taking a chance with much of what I have been having to do myself, between the hip fractures last year in December to the 4 month ordeal getting over neck surgery this past April, along with my lower back, now the shoulder that has been replaced and that elbow on the right side just giving me hell with pain, and the weather does NOT help for sure...,

I "PROMISE" to get back TO YOU GUYS, MY READERS, AND THOSE THAT FOLLOW MY BLOG, MY NEWSPAPER, MY FACEBOOK, TWITTER AND SO FORTH... AS SOON AS I AM OUT OF THE HOUSE, IT'S SOLD, AND I AM SETTLED INTO AN APARTMENT, MY HOPES ARE THAT I CAN ONCE AGAIN FOCUS ON THE THINGS I WANT TO DO, BLOG, WRITER, BE WITH MY TWO FUR BABIES, AND SPEND MORE TIME ON MY ADVOCACY WORK!!!!


Tuesday, October 17, 2017

"National Pain Report and a New Book about FM and CFS....


 

FIBROMYALGIA and New Book You maybe interested in.....


http://nationalpainreport.com/new-book-gets-to-the-underlying-cause-of-fibromyalgia-8834612.html


Since I really LIKE what National Pain Report says, here is a new book they are talking about, and it's in regard to FM, (Fibromyalgia) which I know MANY of you have, have been diagnosed with it, or told you "may" have it or what they also referred it as, "Chronic Fatigue Syndrome"... I know MANY years back when I was trying to find answers to my "nightmare of several times a month migraines" I had several physicians tell me they thought I "may have" Fibromyalgia, or then also they referred to it as, Chronic Fatigue Syndrome... 

back then it was so NEW, they really had NO CLUE about it at all what it was, what caused it, or EVEN IF IT WAS A REAL DIAGNOSIS... I know MANY women continued to "hear" it as a diagnosis, when doctor's did not KNOW what was wrong, with WOMEN especially so it was either you have FM, CFS, or you are "stressed" or "depressed".... which aren't we ALL those things, whether we are "chronically ill" or NOT... plus being stressed or depressed it NOT just for women, but MANY men now days also... but since I realize that IMOP (which my opinion is not really a matter here) but I THINK that FM is an "autoimmune illness" just as any other like Lupus, RA, Sjogren's, JRA, and the

Monday, July 17, 2017

How does one find "hope" when your life feels like the meaning is gone... Chronic Illness, and Chronic Pain how it takes its "toll" on your mind, body, life and soul.

Lots on my mind... I miss "life", I miss what I loved so much, that I feel was lost in "translation" somewhere along the way. I've not had much to say, because I cannot stop the tears from falling. I've been trying to pull myself out of this "funk" but honestly, I cannot find motivation to do much of anything.

Living from surgery to surgery, not knowing from one day to the next what will happen as far as my stupid Lupus, RA and such, not having the love in my life that I had, I feel so adrift, so lost... There is so much to say, but I am so choked up that I cannot even find enough words to type, write, and I feel "useless"... I always had something to look forward to each morning, I always had "plans" dreams, had faith, and all of that has just faded into memories... 

I told a friend this morning that now I know why as much as I love music, I find myself almost unable to listen to it... used to I had the radio on, everywhere, all the time, or the I-pod on walking, and now it's too hurtful to listen to what hurts so deeply in my soul... too many of the very songs I loved, bring back too many memories, and I've lost just about everything that I've ever loved, and held so precious. I used to be able to find a way to pull others out of this kind of horrid emotion, yet I cannot find a way to pull myself out of it... I feel so "forgotten".... and I think that is because I made the mistakes, that made others "forget".... I blame me, for much of that....

All that I "lived for", hoped for, had faith in, over the years the constant concern, over my own health, and my loved ones health... then the surgeries, many, and the severity of pain, sometimes even with medications, it seems it is relentless... and then to think that you may "lose" how far your life has come, fighting to find relief, find great physicians, that understand, and try to help make you more comfortable so you can find greatness in life and love again, could be thrown out by the governmental bodies, that have not one clue what we endure on a daily basis.

If someone would have told me in 2004, that I would lose the love of my life, that I would have to endure so much chronic illness and pain, that I would find myself so lost, and feel as if anything that I was ever "worth" or worthy of, no longer am I worthy or worth anything.... not worthy of being loved, not "worth" the paper either of my published books are on, and that all I hoped to do in the future, to help others, I find I am drowning in so much heartache, that I feel nothing, but pain, loss, and see no way I could help anyone, when I no longer can help myself.

I cannot sleep, I live with severe cold night sweats, and night terrors, ever since my husband left me, just walked out after 13 years, and then my Mom passing away in 2016... I've lost all will to "walk on"... to "look forward"... I stand stagnant, I cannot find the words to express the severity of gloom that deems to cover my heart, my soul with a darkness, that I am not sure I will ever get out of... not a "hole" but just an ever surrounding era of darkness, and each day, I used to think it would get better, things would change, I would find the "light" again. Yet, light only makes it hurt worse.

When i look in the mirror, at myself now... I don't see the "young at heart" 50 plus year old I was... I see the older, lonely broken-hearted woman, that who would want to have any longer? The Sjogren's took all of my teeth nearly 4 years ago... that was one of the things in my life, I never wanted to have to go through... it is a "loss" that makes your reflection in the mirror so different... you feel "older", your feel any "beauty" you had has been suddenly taken away... I used to be overly obsessive because my teeth were pretty crooked, but then when you lose ALL of them... and have to try and endure total dentures, at a young age, they never are "like" anyone says that they are... they are just a total pain, in the mouth, in having to deal with them, in you not wanting anyone to see you without them...


I'm also dealing with a different "medical issue" that I have brought up to my doctors several times, but I've still not really gotten an answer, or what to do about it...


I've been having heck with "nighttime cold clammy sweats"...NOT a "hot flash" but I wake up shivering, my clothes, pillow, and bed sheets completely soaked in sweat. I've also had night mares horribly and have an issue about waking up around 3 to 4 am each morning, and not able to go back to sleep. I had quit drinking coffee because of my GERD, and didn't drink any for about 2 years or more. 

But, recently, even with the heat, I've almost "craved" coffee but only early in the morning. I have mentioned these cold shivering mainly happening night sweats to my doctor several times and really expressing that it concerns me. I don't think it is "hormonal related" because as I said above, it's not like a "hot flash" and 99% of the time they come on in the middle of the night almost at the same time. In fact, the past two nights it's been really bad. I had to get up, get my thick robe last night, and as "warm" as it is, I had to put that robe on and sleep in it, because I was shivering I am so cold. About 2 weeks ago, I had one before I went to bed. I felt it coming on, and it usually starts on the back of my neck or my head becomes suddenly soaked, then the rest of my body follows... so I've done some research and it sounds like "hypoglycemia" but a specific one that usually only happens at night, like this causing a cold clammy sweat that soaks your clothes, sheets blankets and all. Plus the waking up at 3AM is another sign of it, and the night terrors I have can be a symptom. I am a huge fresh fruit eater.

 I try and stay away from high calorie foods, I eat whole grains, and try to stay away from white flour products, but I do love sweets. Yet, I bake my own often using whole wheat flour, canola or coconut oil, Splenda, I've not used very much "sugar" for many years. I've done a great deal of research on different types of flour, and as I said most everything I bake I use whole wheat flour, recently I've tried adding some Coconut flour to a few things, but it is really hard to "adjust" to. You don't have to use very much at all, like a 1/4 of a cup, can take the place of over a cup or more of white flour, or even wheat flour. It gets "thick" very quickly, and I use "egg beaters" mainly. I am not a huge beef or pork eater, but mainly chicken, turkey, fish, beans, peanut butter and even though I love cereal of just about any kind, I usually stick to something like plain cheerios, or some such as that, then add just a tiny bit of some other one that is a bit sweet.... 

What I didn't realize is that "hypoglycemia" can be a precursor to diabetes. With my RA and Lupus, I do have a higher chance of having diabetes, thus I watch the sugar intake, etc... try and walk, exercise daily, of course lately with the neck surgery, it's been rather difficult to do other exercise other than walking, plus I've had so many problems with at first my right hip and thigh the one that was fractured causing pain, and sometimes walking makes it worse, but now both of my hips hurt, and I have to wonder if I have bursitis in both of them. 

I've had it before and had both injected, once or twice at the same time. Since I did not have a "complete hip replacement" after the fractures, but a "gamma nail" and screws i found out I could still have "bursitis" in that hip. I've also noticed especially since the hotter weather arrived, I have a very hard time with my "body temperature" inside. I'm either too "cold" with the A/C on, OR I turn it where it comes on less, then I am too warm... like my body just cannot adjust its temperature.... Has anyone experienced this type of problem with the cold clammy sweats, I mean soaked clothes, sheets, blankets and all... and get up and often my clothes are still damp, even if I got up and changed during the night.... and if so, did you get a diagnosis, or what have you done to try and help it?

Friday, February 10, 2017

I was given a "press release" that I am very proud of ;)m- Goes to show ANY Advocacy Work is well worth doing especially for Chronic Pain and Illnesses


I've really been down and out lately at the numbers that are coming to my blog. Used to I would have at least 75-100 and sometimes 300 or over. But, over the past 4 months, even before I went into the hospital I noticed a huge drop in those coming to my blog.

I know "Google" have changed a great deal of their SEO stuff, BUT, I have many of their ideas and recommendations that I use. I've not went through the entire "book" of recommendations, BUT, I usually post everyday, sometimes more than once. I do miss sometimes, such as when I was "out of pocket" due to the hip fracture, but even then I still posted once I was feeling a bit better and had my laptop to post to all of my social media places.

The one thing that I have not done "much" and continue to try and not do, is get too deep into the "political" issues that are invading our lives DAILY! I know many are like myself and HOPED that AFTER THE ELECTION some of the DAILY CRAP WOULD STOP!

Well, I should have known much better than that. With the "Donald Duck" elected LOL, there is NO way to SHUT HIM UP NOR the NEWS. Everything he does, tweets, says, posts, and probably what he eats for his 3 meals a day are NOW LARGER ISSUES ON THE NEWS, THAN THE ELECTION!!!!!

I am SICK TO the point of NAUSEA hearing about "The Duck" this, that and the other.... I cannot even "type his name" it makes me so ill to see or hear about one damned thing he does.

I was a "voter" and I've voted for many years, without missing many. Of course I feel if we "vote" then we do have a right to GRIPE! But, for those WHO DO NOT VOTE, then you do not have the RIGHT TO FUSS because you did not allow YOUR VOICE TO BE HEARD!


I KNOW that my "typical" daily life may not interest you. thus I "try" my best, to put something useful, fun, information that you can use, new items from The Arthritis Foundation, to WEGO, to other health and human information especially for us that remain all too ill, from Chronic Pain and/or illnesses.

I am HAPPY that although I had TWO HIP FRACTURES, now in 3 days it will be 90 days since that 1st surgery, and I am doing very well. Even without a cane, and in fact, I left it at home yesterday and did not even take it with me.

I realize at times, I am still leery about being almost too cautious, in fear that another fall could even be worse. I also am in fear that if I don't try and do all I can to "never cure" the osteoporosis, BUT try and build "muscle" and "put protein" back into my body, I have a far better chance of not being a "fall victim".

The woman that was in the room at the Rehab place with me for part of the time, had already been in the hospital like 3 times BEFORE CHRISTMAS, IN LIKE 3 MONTHS! She had pneumonia a couple of times and was put in for that. She has also been a "Diabetes 1" victim since being a teenager, which I watched even after all these years, especially without a proper diet like she should have had in Rehab, she was always having way too many problems with her Diabetes. Then she had fallen and been in Rehab before Christmas I guess in August or September, then fell broke her pelvis, WHICH SURGERY OFTEN CANNOT REPAIR A BROKEN PELVIS, thus you have to spend WEEKS AND WEEKS IN BED TO ALLOW IT TO HEAL ON ITS OWN! Her pain had to be horrible. I know HOW MUCH PAIN I WAS IN WITH THE FRACTURES TO MY HIP, and I was yelling, screaming, cussing, bitching, crying and my entire neighborhood probably thought someone was attacking me, or I had just lost the rest of my mind. MANY of them came when they saw my son's vehicle here to ask what happened, that I was SCREAMING AND CRYING SO MUCH, they could not imagine what had happened. No one I guess heard me screaming and yelling and crying, while I was still in the house for over 3 hours, being too stubborn to call the ambulance. I "hoped" I had a "bad bruise" NOT a damned brake to my hip. But, alas dammit the news was worse, because I had TWO breaks in it.

I cannot begin to even express "ALL I LOST" in those weeks and weeks, through the surgery, through being an inpatient in a Rehab Center, from my own self-esteem, pride, I felt unworthy, useless, a burden, and just a totally screwed up person to be going through this and making my kids go through this also.

LOTS played into my issues with the entire thing, because of losing Mom to Lewy Bodies Dementia in June of last year, and having to take care of her, the 6 months prior, I was already more than behind on "caring for me"... I cancelled neck surgery at least 4 times, and just put my RA medication on hold, since I just felt I COULD NOT leave and go to Dallas for a few hours.

I AM STILL trying to "clean up" everything that needs to be done, and actually am totally confused, because I feel I did not "grieve" enough before trying to begin taking care of other affairs once she past away, that now I get to a place I am not sure what, what not, which, how, is done, not done, and my own "Christmas Present" to myself, is still sitting in my hallway, along with the new rug for my living room. But, now with the hip thing, I fear trying to turn the old sofa over in order to get the backs off of it. That is what has to be done, before it can be taken out of the house. Once that is gone, I can once again clean the hardwood floor very well, put the rug down and get my new sofa/futon/chaise lounge finally put up and using it.

So, NO the political issues I speak of are usually tied into "medical things".... whether clinical trials, or laws, or trying to get the government to fund certain research projects, and so forth, my "own personal beliefs" in whom should be or not be President, and so on down the agenda, I feel I did my part, I can now bitch all I want, AND then go on with my life and pray we have NO ALLIES by the time one YEAR has gone by with the "Donald Duck"....



P.S. I WILL POST THAT PRESS RELEASE AS SOON AS MY NEWSPAPER PUTS IT OUT.


Friday, January 27, 2017

After Surviving Two More SURGERIES, fractured hip 2 places, a Hematoma Softball Sized, and my 1ST TRIP out by myself in over 6 weeks!! And Mourning The Loss of By Precious Fur-Baby!

I came in from my 1st TRIP out ALONE earlier this afternoon..made it to the market, to my pharmacy, & to pick up the Angel that ever's had given out in a celebration of our loved ones who passed away last year. I missed it due to the fall resulting in the fractured hip, then another surgery to remove that softball sized hematoma. One of the women at the market, knew what happened, because she was buying groceries also, and came to me, hugged my neck and told me just how much pain I've been thru, that she said she could not be as strong as I have been. I hugged her back, and told her, that inside, you "find" the strength, and from "above" to help you to try and heal, to try and regain your own life, even though the loss has been tremendous. So, I got home, & Peanut was waiting for me, I let him out of his "carrier" (he love the thing and gets in it all the time himself... as I carefully brought one sack at a time in up my front porch that has only two smaller steps, and began putting them up, 

I went to put up some dog treats, and all of what happened that night with Bubba Gump came rushing over me and through me, and I had to come to my desk, as Peanut knew I was upset so he is sitting beside my deck, on the sofa.... so I opened up Bub's beautiful cedar box, and broke down and sobbed.... it is so hard to believe those few ashes, were once my sweet Bubby's..... 

I will NEVER be able to forgive myself, because I feel Bub's would be here, had I not been gone so long... he mourned himself, sick, and stopped eating and drinking, even though my son and my dog sitter were coming by each day to play with them and make sure they had fresh water, fresh food and clean paper...

 but I will never forget the night I held him so close to me, and talked to him, and kissed him, and he licked my face, laid his head on my chest and took a last breath..... all of these losses, are just about more than I can handle... Anyone that has "fur babies" or any pet they become attached to, and that pet attached to them, it is a loss of a family member if not worse. I just heard on the news last night, that a child will say at times, they love their fur-baby more than their parents at times... a pet loves unconditionally... and I know he is with Tazzy... and someday I will be with them, but right now it plain hurts....

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

 

 

Saturday, September 10, 2016

Grieving the Loss of a Loved One BEFORE they are no longer gone but you are a caretaker due to a chronic terminal illness...

I've been going through a really "odd" (pr what I felt was odd) kind of issue since Mom passed away in June. I kept telling others that I almost feel as if I am "still in shock" rather than in the "grieving process" and all these weeks and weeks, I kept "waiting" for those signs to appear, and they have in some ways...

yet I have felt angry and almost ashamed of myself, for "not showing" grief in losing Mom... daily now for weeks, I keep wanting to "call her" or run over to tell her something, and even though I am there almost everyday doing the remodeling, this feels different... then of course I realize no longer can I "talk with her here", call to see if she is okay, and usually have my own set of "life's issues" that I could talk to her about... 

well after much thought about it all, right now I am dealing with a great deal of almost feeling like "her life was dropped in my lap" kind of thing, but, I looked it up, and as I've mentioned, I had been "grieving" the loss of my Mom for months and months way before she was "bedridden"... 

and didn't know me, nor even where she was or who she was... I had that "grief" daily, from moment to moment, it was every changing, depending on what was going on at that time, or on that day... thus although it still sounds horrid, when she took that last breath, I felt at that moment "relief" for HER... no more suffering, hurting, crying, diapers, and lying in bed, she was finally "home" with Dad, and her family.... 

so here is one article I just read and decided I would post it...for weeks now I have felt like I am just "insane" yet what I've been through and am going through is all a part of the process... 


https://www.agingcare.com/Articles/grieving-before-death-terminally-ill-116037.htm


Monday, August 8, 2016

A Petition to sign for Chronic Pain and such, along with information on Your Congressional Members and Town Hall Meetings!

https://petitions.whitehouse.gov/petition/direct-dhhs-fund-and-implement-national-pain-strategy-reduce-public-health-burden-chronic-pain-0


Above is a link to Congress a Petition to sign about Chronic Pain and its effects on our soldiers and Armed Force and everyone else....

Also anyone who attends town Hall Meetings in your area, congress is out for the next month and most are doing them. So, be sure to find your s and see the schedule. Here where I am mine is Joe Barton, so here is his schedule for those around in the counties he serves.... 6th District in TX.....


https://joebarton.house.gov/press-releasescolumns/rep-barton-releases-town-hall-schedule/


Town Hall Meetings with Representative Joe Barton, while Congress is out for this month... be sure to check on yours if you want to go and give your reasons for anything... from chronic pain and such, to the focus on how horrid our governmental situation is now...


I KNOW SPEAKING UP WORKS!!! It has helped myself as well as many others, so SPEAKING OUT TO YOUR ELECTED OFFICIALS IS IMPORTANT!!!



Friday, July 8, 2016

Texas - And Violence too Close for Comfort just up the road, and an Officer from a Neighboring Town

It seems that no matter where we turn there is little peace on this Earth anymore. We continue to see more violence, more rage, more terrorism, whether from afar or from "home grown" people that sometimes I feel "give up" on the faith of humanity. I realize that ALL of us have a place in us that can "get to the place we have had more than we can take"... I've been there as far as illness, chronic pain, and then watching my own Mom pass away of something horrible that took her within just a few short months... actually weeks honestly. Yet, somewhere we MUST reach DEEPER within ourselves, and FARTHER into our own faith to know, that violence and harm to others is NOT the answer, it just makes things worse for everyone.... it's hard to fathom that "humans" can take the lives of other "humans" yet it is all around us, from small towns like mine to huge towns like Dallas and all over this nation and the world. Answers? None of us have really have "answers" other than trying to "hold onto" what we feel is right from wrong, and what we have been promised by our own "Higherpower"... Lord bless and look down upon all of those families, friends, and co-workers that have lost so much... this will impact many, many right here in our own community, as well as others.... May they find some "peace and understanding" through the wake of such horrific violence.


Tuesday, June 14, 2016

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.alz.org/








http://www.alzquilt.org/








Thursday, June 2, 2016

Update on Mom the Alzheimer's, getting home from the hospital and of course hurting my back again, and so forth....

You are all such a blessing, and know you are so loved and appreciated... Mom and I had "hell" getting into the house last night. They did not officially discharge her till like 6PM! And I had to get her into the house by myself, so with her having having both back and front, I chose the back, with two lower steps, and using her walker, we very SLOWLY and with a few "choice" words, LOL, made it into the house, and finally to her bed. Hospice DID come by last night around 7PM, I was so shocked, I did not expect a nurse by, plus they had a courier bring some stronger pain medication for her, and now all of her medications will come via courier.... so that will be easier... of course now Hospice has taken over for the doctors etc as far as the dementia, and anything "to do" with that diagnosis, etc for now.... so I am hoping it will "settle" down a little... I really did a huge NO NO though - I injured my LOWER back, which already needs surgery, between all of the walking yesterday back and forth, our hospital is laid out so stupid, and you have to walk what seems like a mile just to get to patient's rooms, but then getting Mom in the house, I did a real number on my lower back and my neck.... I got her settled in and came home very early this morning to do some stuff done here, that I have to do and then I will head back over there, because her Social Worker, Aid, and so on will be coming sometimes after 8AM I gather... so it will be another day of hell I think, just being up on my feet, and getting stuff in order and so on... but now the Ensure, pads, Depends, and any and all "medical stuff" she needs, they will automatically bring us. and I no longer have to be picking those things up, including I gather most of her "meds" ... not sure if it is all of them yet, but ones that go along with the hospice diagnosis they will get and have brought to me... which is some help... then they have a list of people I can have either come "sit" with Mom in the week, night, day, etc for a few hours, some volunteer, some I will have to pay, but I can still go with ""Home Instead" which is a "sitter service" BUT they will have someone there, and I don't have to worry over if I get sick, or need to be away, and someone HAS to be with Mom, even though it means paying for them, they are bonded and so forth, I've met with one of the main case workers already.... and it is MUCH less although not cheap, than putting her in a nursing home, which means about at the lowest 3,000.00 a MONTH for room and board.... so hopefully we can keep her at home, where she REALLY wants to be, and hydrated, and well enough to avoid the hospital again... I can't say how much I appreciate all of your thoughts and prayers... and I need to get busy getting things done here, etc... but I will post when I can... Love to all of your guys and gals, Rhia Steele "All things Autoimmune"

Saturday, April 23, 2016

The Latest Addition of my Saturday Newspaper All Things from Chronic Pain to AAI illnesses, Lupus, and so much more.... great stories today!

Latest Saturday Addition of My Newspaper "Life with Chronic Pain and AAASD's"'' LOTS of great articles from Arthritis, to AI illnesses, including Lupus Awareness Month coming up, Chronic Pain Patients speaking out about the medications they need for a quality of life and even so much more! Check it out, please forward it, and sign up to get the updates daily!  Thanks to all of you, Rhia Steele "All things Autoimmune"​



http://paper.li/ravishingrhia/1438808814?edition_id=1522ce40-0766-11e6-8e8c-0cc47a0d15fd


Saturday, April 9, 2016

Latest Addition on Saturday of "All Things Autoimmune""

Latest Saturday Addition of Rhia's Newspaper "All Things Autoimmune" - Chronic Pain, Health, Laws, the CDC, technology and so much more... feel free to subscribe to have it come to you daily via email!





http://paper.li/ravishingrhia/1438808814#!headlines


Tuesday, March 22, 2016

DOES IT EVER END????

Now as if things are not screwed up enough!!!! MOM TOOK ALL HE MEDICATION MORNING MEDICATIONS THAT WERE SUPPOSED TO BE THROUGH FRIDAY! all of them already! THEN ONLY TOOK "PARTS" OF THE BEDTIME MEDS... WHEN I asked her why she just looked at me and said well it is so simple I really do not know why I can't "get it"????? Then she DID NOT TELL ME that her legs and ankles were VERY SWOLLEN... now this is since Sunday - well she did NOT take her LASIX all week last week, because she did not take ANY meds last week... and SHE said Well they were "worse" they are better now... BULL, SHE is playing with "fire"... the entire reason for being SO CAREFUL about swelling is TOO much FLUID can cause that "heart valve" to act up and then she is facing open HEART SURGERY!!! So, I MADE HER TAKE ANOTHER LASIX and watched her and then increased it over the next 5 days to 2 every other day, which is what her heart doctor wanted her to do in the 1st place!!!!! 

Then "THEY ARE BACK!!!!!!!!!!!" I was in the back yard a few days ago, and in the back forty lot over some of the "weeds" I saw lots of what I thought were those damned "May Flies" which I hate swarming... BUT NO, THANK goodness I went back today and looked, because earlier I was out there with the weed eater trying to knock down some of the tall weeks before the city freaks and wants me to pay to have someone come and mow it with a tractor... 

BUT I stopped and decided I had enough room to spray weed killer as usual and should knock it down enough, it is all weeds and no grass... BUT, I LOOKED BACK AT THAT OLD BUS again a bit later AND IT'S THOSE DAMNED HONEY BEES!!!! WE "RAN" THEM OFF WE THOUGHT' They built in the neighbors walls... and he almost never got rid of them and NOW THEY BUILT OR ARE BUILDING BACK IN THE DAMNED OLD PIECE OF BUS ON MY BACK FORTY!!! I have been wanting to get someone to haul it and a bunch of old dead trees and tree limbs out, but finding the money is not easy... SO CRAP I have to do something... I just hope I can find someone who will come and "move that damned hive".... what a mess... 

Bub's is better, and I still never "found" what bit or stung him, and he is still not all the way over it, but all of it is looking much better, and I can tell he feels much better... what a damned nightmare... I do not honestly know what to do about Mom... and then I find out something about my car lease that I am really pissed about, but I will "save" that story until I do some research..... anyway, things suck even worse, and I am worn out.... and sick and tired of it all..... does it ever end!!!????

Friday, March 11, 2016

Dealing with Eldery Parents who have Alzheimer's or Dementia, when you, yourself are dealing with Chronic Pain and Illness...

 posted this on my FB page, and I will put it here also... I will be doing some work on my blog, my book, my new newspaper I have began, as well as some other things around my home, and some thinking about life... and how to deal with some really tough issues.... I maybe "away" from FB for a couple of days. 


There are some things I really need to get to working on as far as this new newspaper I am staring. I can customize is a great deal and it could really help me with my blog, as well as with my books , and my next book...plus lots of my advocacy work...getting information out there that would really benefit many people and help make what I want to happen possible ( I Hope)...I have also had some new ideas for my 3rd book unfold in my mind over this past couple of weeks, and although I jotted some of it down, I would like to start writing on it, in the beginnings of the book itself.... There are also some "personal matters" that honestly came up this morning, mainly to do with all of this mess with my Mother, and at this moment I am totally at my wits end, I have no clue where to go or what to do, other than leave her alone, and allow her to figure out "all is NOT RIGHT in her world".... she really hurt me earlier... calls me well before she is usually even out of bed, wanting to know "why I had not called or been by"...

well for one I was there two days in a row, just yesterday for one, and besides she is usually never even out of bed until after noon time... anyway, she asked me what I was doing, and then she told me I was a "blabber mouth", and I should NOT be telling my own kids what is going on... well I tried to tell her the kids are NOT stupid, and they "hear and see" and then she says they are never here nor never call so how do they know anything? So, I hung up... well I called back about 30 minutes later, and began to tell her to NEVER call me a "blabber mouth" again... that it for one hurt my feelings, and for two was NOT the truth, so then she began to tell me that losing her credit cards, not being able to work her stove, put her car in gear, not pay a bill correctly, not take her meds correctly, not know why the alarm clock blinked etc "meant nothing" and why do I even "care"... it is in the past... 

and when I said MOM jut yesterday I WENT TO GET YOUR MEDS AND GO TO THE STORE BECAUSE YOU DID NOT FEEL LIKE IT... so it not in the PAST it is right now... and she made some snide remark oh well, when we get there or if we do, we will handle it then... well WE ARE THERE! And she cannot continue to live alone, and if I tell the doctors about the car incident and and a couple of other things, they will tell her she cannot drive NOT live alone! As I told her and "building you a room" takes more than a few days.... she began to tell me I was full of crap, and nothing was wrong with her.... so I hung up with Okay, I will not "bother" you again, I am NOT calling, I will NOT come over there, and "if" you need me, then call, otherwise, I refuse to be hurt and used like a doormat and then laughed at when I told her that her calling me a "blabber mouth" hurt my feelings... and she said "she never even called me this morning"..... 

so, I have LOTS of things I want to do and get done, and I honestly right now am so totally sick and tired of this crap.... that she may wind up in a nursing home, if she does not want to listen to me.... I don't know what else to do.... but I need to get some rest myself, and do some thinking about several things... so if you do not see me here much, I am okay, just "out of touch" for a few days....

Thursday, February 25, 2016

Eldery parents,caretakers,your own illnesses,surgery,family matters, Humana and insurance,doctors offices and issues, and more...

 Life is not always  BED OF ROSES... but I would settle for a few soft petals for now...




I am so excited - My NEW CORDLESS Weed Eater Came in yesterday! No more trying to pull those heavy cords around the yard, and I can take this out into the "back forty" also. Plus it is really almost lighter in weight than the corded one, and certainly lighter than the "gas" one. I can't weed eat for any long length of time, but I did discover, as long as I take it slow, and take breaks fairly quickly in between, then I can do lots with it. I can't start my darned lawnmower, because I do not have enough strength in my arms anymore to pull it quickly enough for it to start. It sucks, because I just put almost everything new on it last summer. I put the new pull cord device on it, a new air filter, changed the oil, a new spark plug, and fixed the "baffle" on it that deflects the grass. So, I am hoping my neighbor who used to mow the lawn will still do so, and he can see if i did a good job in the "overhaul" I guess when it plays out on me, I may have to get one that is "push button" for starting or something. I no longer can pull the cord quickly enough to start those kind. Anyway, right now I hope "nothing else" breaks or needs replacing around here. 

I've got the surgery to pay for, a doctors visit tomorrow that will have to be paid in full right now by me... he is my PCP and the ONLY doctor NOT on my "preferred provider list"... Hopefully since Aetna bought Humana, (they are on Aetna's plan) finally it will come together and they also will be on Humana's also... it is so odd, Humana used to carry them as a preferred provider for years.... anyway, I am having HELL with the surgeon's assistant that is doing my neck surgery. I go through hell with them on insurance every time... I FOUND THEM AND CALLED NOW 3 TIMES to make sure his clinic is on the "preferred provider list"... and I have seen it and they told me AGAIN ON THE PHONE YESTERDAY, that they are on Humana's "preferred providers list".... BUT the doctors office said the insurance said that they are not... well the issue is they have it listed under their "clinic name" which Humana tells me that means "the doctor" is covered... and I even got a special number on the phone yesterday as a confirmation that he is a preferred provider that I faxed to the doctors office... anyway, I have a 750.00 deductible on any "non preferred" provider then the insurance will pay 60% of the bill anyway, and then I pay 40%... so if it comes down to it, once that 750 is met, I would owe 40% of whatever, office visits, etc... and sometimes that 40% is actually "cheaper" than the co-pay which now is 20.00 for a PCP and a specialist is 45.00 in co-pay.... anyway, between that, trying to get Mom all figured out as far as her medications, and so forth, making sure I have someone to get me back and forth to the surgery next week on my neck and I think my son will be able to, he has to check with his work, then I will be in a neck brace for about 4 to 6 weeks...

 I will be able to drive after a week or so, but being in that neck brace makes it a bit more difficult, plus my pain pump has to be refilled around the 18th or so.... gosh always something... I won't be able to bend over, so I will have to get "creative" in changing the dogs paper and feeding/watering them... the little one is so full of "pee and vinegar" as the old saying goes, LOL, I will have to be extra careful with him after surgery so he does not trip me, or make me do something to "injure" my neck for the first couple of weeks... anyway we have all of that going on, and some others things, with family going on... I think all of us are more stressed out than we can almost handle... keep your thoughts and prayers with all of us right now.... I know my family will appreciate it for sure... 


My daughter and her family are under a great amount of stress due to jobs issues... things are so up in the air with the oil and has industry, and her husband, my son-in-law has worked with that type of thing now for over 10 years... yet with the extreme drop in oil and gas prices, of course it is taking a toll on so many of the companies that have anything to do with oil and gas right now... It is wonderful for us when we go to the gas station, but a nightmare for so many who may lose their jobs, and so forth. Talk about a double edged sword... so I have her and her family in my heart and am concerned for them, as I know this is a difficult time for them also. He does not really know from one day to the next if he will have a job with the company or not, and after having that security, benefits, insurance and so forth for over 10 years, that is difficult to deal with.


Saturday, February 13, 2016

Dealing with an Elderly Parent who also appears to have either Demenia or Alzheimer's when YOU are in Chronic Pain and have Chronic Illnesses.....

I took my Mom, (we have not been in almost a year due to both her and I being ill, so this was supposed to be an incredible trip!

Mom has been showing so MANY signs of either Dementia or Alzheimer's now for 2 years or so to me. Yet, the last 6 months have gotten terrible. I could write a book on just what I have been through due to her "diminishing" ability to "think, not be confused, not to almost burn the house down, to not be able to pay her bills, or even read her mail" and the list goes on and on... and remember I AM ALONE NOW, I AM CHRONICALLY ILL WITH SEVERAL AUTOIMMUNE ILLNESSES MYSELF, AND LIVE WITH HORRIBLE CHRONIC PAIN... so to have to also deal with some of these things with her some days is more than I can handle almost...

So, this is a bit about our overnight trip to the Casino at Winstar in OK....

(From Friday evening after getting home)
TOO WORN OUT, TO EXPLAIN all the HELL at the Casino the past two days, but yesterday ALL OF THE MACHINES WERE DOWN MOST OF THE DAY! TODAY MOM LOST ANOTHER credit card! I JUST HAD TO CALL ONE IN LAST WEEK SHE LOST here in town. So, today, she "discovers" she lost another one! Then she misplaced her cane about 10 TIMES at least... other than that, and HORRID nightmare traffic going especially but coming back also ROAD CONSTRUCTION EVERYWHERE!!! But, other that those things all in all, it was a GOOD TWO DAYS!!!! LOL!!! Oh and my kitchen was still standing when I got home. LOL... The pups were in the kitchen with their quilts, food, blankets, toys, water, etc... and actually I still had a house standing.... LOL!!!! More over the weekend, I am totally wiped OUT! But, I came home with only 20.00 LESS THAN what I went with... so I guess that is a good thing .....

(Today Saturday morning I continue)  .......
Those issues, and that we had not really gotten to play much at all on Thursday, (can you imagine how much money the Casino lost?) Their "main server" went down for some weird reason that does everything for all of the slot machines! In fact I sat down and played, and was going to switch machines, and it would not print me a ticket with my money on it... so then I began to notice ALL of the machines were "blinking" and people we saying the same thing I did!!!! So they really had one heck of a mess. And of course the day we decide to go of all times!!!!! I am so totally worn out today thought... Mom "lost" can her cane 5 times. Once I had to go and ask about it. And "lost and found" brought it to me, someone had turned it in... the other times "I" finally found it, once she could try and recall which machines she had been at. It was a nightmare... then when she found out her credit card was GONE... I just went nuts almost. Thank Goodness it was a "credit" card and not a debit card for her checking account. They may have been much worse. I had to get home first, find an old statement of hers, so I could even find where to call to cancel it... and then bring her information home and call them. Then she could not decide to eat at the Casino (we did not eat breakfast at first like usual) and just played thinking we would play an hour or two, then eat and leave. This was like 6:30AM or so... so by about 10AM, even I started getting hungry. The night before she would not even eat down in the Casino like we usually do. She wanted to get something and take it to the room... which was fine with me, but just weird. We went up "early" about 7:00PM to the room, and had gotten some really good fish and fries, much, much more than either of us could eat... we should have ordered just one and split it. So, I turned on the TV and was watching a movie... the next thing I know she is in the bed, with the extra blanket, already asleep by about 8:30PM or so. I could not believe it, and she never woke up at all, and usually she is up and down several times a night.. I finally decided to lay down also, so I changed and got in bed, and I woke up by 5AM on Friday and HOPED the slot machines were okay... But. I was already drinking a cup of coffee, I had made their in the room (which sucks) but I needed something... and was almost dressed by the time she was up moving, ready and packing. Like I said it was just strange everything she did. Heck, when we were going to the Casino, she sat and spent like an hour almost going back and forth through her purse. I thought maybe she lost something... but she was just "confused" I think about everything... then she kept saying we should be there already, and I said YES, if we had not been in stop and go traffic for about 35 or 40 miles or more off and on, we would have been there in about 2 hours... it took almost 3 and a half or more hours to just get there this time! Anyway, I parked and again she began going through her purse, and taking stuff in and out... and I finally asked her Mom have you forgotten something? She just said I cannot get it all organized, and then she had her "Players club card" in her hand, or lap and started saying she "lost it"... I looked down and said Mom it is right there in your lap..... anyway, I knew then it was not going to be a incredibly exciting trip... and one time about 2PM on Thursday, I told her to "SIT" and do NOT move from a certain spot... I was headed to get some tea, and go to the restroom, which was a long ways down, and then I told her I was going to try and check in to the room... so DO NOT MOVE! I get back and she is GONE! So, I thought gosh knows where the hell she is now... so I started looking, and finally spotted her rambling around, and I said WHY DID you MOVE??? She said well you were taking a long time... and I said I TOLD YOU, it is a MILE almost to walk from where we were to the HOTEL to check in! So, yes by the time I got there, got something to drink and went to the restroom it took a while, but why the hell you did not STAY where i said to... and she just looked at me... LOL! Anyway, it was okay and I had a wonderful time JUST BEING AWAY FOR A DAY OR SO AND A NIGHT, from the house, dogs, and just "Life".. BUT, I FEEL Mom will not be going back there again... if we do go to one, we may have to go to one of the smaller ones, who has already grown huge also... but she even said it, I just don't think I can go through this again, OR put YOU through all of it... and I told her Mom, it is fine, I did not mind and We BOTH needed to be away for a day and night... I told her I have my OFF days also... BUT now she really sees what I have been seeing for several years, and really bad the past 6 months... she goes to our PCP on the 22nd, and I am going to have a huge discussion with him... this is not just "old age", this is definitely more than that... I just PRAY it is not Alzheimer's.... Dementia is severe and bad enough, but the other, I watched my Grandfather go through that, and I surely do NOT want anyone to have to deal with Alzheimer's it is a horrid illness for sure..

Tuesday, January 19, 2016

Pain News Network Articles and Information


NO "Epidemic" of Overdoses.... see the article below... great example and reasoning...


http://www.painnewsnetwork.org/stories/2015/6/12/there-is-no-epidemic-of-painkiller-overdoses#.Vp5PM_Y_Lh8.facebook=

here is another article from The Pain News Network talking about "urine tests"... and I agree they add 100's of dollars to a patients bill, and many of the times patients take them, due to metabolism, or NOT DOING the correct TEST (which I know for a fact had happened to a friend of mine) those "pee" tests can be NOT right! I usually wonder why the hell they bother giving me one... my pain pump gives me medications all the time, I take pain pills along with the medication in the pump, plus muscle relaxers, diazepam.... and so forth. I certainly do not NEED anything else, and would not dare even drink since now the pump is in (new new one and running) and I am almost back up to my dose before it had a motor stall. So, I know they check to make sure you are "taking" the medications... and of course if you have other substances that should NOT be in your system... the "reasons" somewhat make sense... BUT as I said, there are some of these medications that WILL NOT SHOW properly if they don't do a "special" test at the lab they are sent to. I can relate to the story in another article about the young woman who "fears" her appts at her pain doctor's. It used to be that way for me... and still is at times... we have such a horrible time getting the medication that goes into my pump.. and it is NOT expensive... that is the weird thing... it is actually much less expensive that most oral medications. But, you always go in with the fear that you won't get your medications, or something has changed (like now my pain doctor has a new rule you must have your medications in a "lock box" or safe" ) Which is a very good idea, if you have anyone else in your home... or have company over etc. But, I am not sure where a man standing in the waiting room got this idea, but he was asking about the lock box, and he was under the impression he needed to have his wife take a photo of her and the lock box and bring to the doctors office for her chart... I did NOT read it like that... but did understand the doctors are trying to get the CDC off their backs, so they TELL patients that, so patients are more aware of "protecting" their medications. NOT leaving them out for anyone else to get hold of... and keeping them in a safe place, especially as I said, if you have others in your home or people that visit, it is a good idea to lock your meds up. One time years back, I had a medication that was a nasal spray for migraines. I had picked up a brand new bottle from the pharmacy, but it was one of those HOT TX SUMMER days... and I guess I did it at lunch time and left it in my car by accident when I went back to work... Well the entire bottle, "siphoned" it's way out of the container, and into the other bottle it was in... plus it was such a tiny amount of liquid it has almost already vaporized by that evening when I got home... I had mortal HELL getting a replacement. I mean it was evident, when I took the bottle in and showed my doctor, then the pharmacist what had happened... but believe me, after that, I was much more careful about where I left my medications. I am so diligent about where my scripts go, that I take them to the pharmacy immediately, and if I don't need them that day, have them on hold for when I do... that way, I don't misplace it and have hell... no matter whether a pain medication or whatever type of medication it is... I try to turn those scripts in immediately. Plus my pain medications are from a specialty pharmacy... so I don't do anything but request my meds when they are due from my doctor, and they take care of the rest. There are times though that they "delay" getting the script to the pharmacy, and I am on pins and needles, if I happen to be running low of meds... so I totally relate to sometimes being "fearful" of seeing your pain specialist...


http://www.painnewsnetwork.org/stories?category=Opinion

Above is a link to another article "Why I am Afraid of going to my Pain Doctor Appts"


http://www.painnewsnetwork.org/stories/2015/9/20/cdc-opioid-guidelines-would-institutionalize-malpractice#at_pco=smlrebh-1.0&at_si=569e5754f5ee1daa&at_ab=per-2&at_pos=0&at_tot=5