Showing posts with label Lupus. Show all posts
Showing posts with label Lupus. Show all posts

Friday, November 24, 2017

Check out my Daily Newspaper for the latest articles on Chronic Pain, Autoimmune Illnesses, such as Lupus, RA, & joint issues, plus many more "health related" information!


This is just one article from today's addition, and I have discussed this several times over the years, even my Mom used to say before she passed away last year, she did not know people could go and withstand the types of chronic pain she saw myself and many others go through....

 

http://www.clinicalpainadvisor.com/chronic-pain/suicide-attempts-in-chronic-pain/article/697827/



Here is the Latest Addition of my Newspaper for today Friday 24th, 2017


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


Life Chronic Pain Autoimmune Systemic Diseases & Dementia



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!!!!


Friday, September 22, 2017

I REALLY GOT RIPPED OFF & I KNOW BETTER BUT BEWARE, THEY ARE OUT THERE, ESPECIALLY AROUND THE ELLIS COUNTY TX AREA! LOTS of money he took and left me hanging.

I needed my home painted outside. I had boards on the bottom that were old and rotten. I wanted them removed and new materials put there so it would be closed off, look nice, & keep animals etc out from under my home. I had several other very rotten boards, a broken window (that I had the glass and materials I needed help putting it in), then it painted properly, which was white everywhere but red around the trim on windows and doors. I found this man on Facebook "not far" from my home. He came over, gave me an estimate, told me exactly what he would do (including power washing the house before painting it), and stood in my front yard (after he found out I had Lupus, RA, and was "disabled completely", and literally "cried" about his Mom, she has Lupus, and how bad it hurts him to see her hurting, and how he goes and helps her all the time. He acted like he had a wife, 3 boys, and like a normal guy his age (around the age of my grown kids) 34, and said he would start the day after Labor Day. Well he called and said he would be "late". He had to take "one of his boys" to school up in "Irving".

 I thought that was strange since they lived in my county a good ways away from where he said he lived. But he showed up, pulled off the old boards on the bottom, then he was doing it so hard, he pulled my plumbing line on the outside of the house loose, and water was running under my house. I had to "tell him" how to turn off the water! HE did, and I even went and got the parts and brought them back so he could repair it. Now he is the one that "broke" it. Then all of a sudden he leaves, he always left and never "told me" he was leaving, when he would be back etc. So, the next day, I had been running an errand and this was up at noon and he had not been there. He was parked on my lawn, which was messing it up, and wanted to use "MY POWER WASHER" to wash my house. I asked him if he had "Simple Green" or some other cleaner to put in it, and he said yes. HE also wanted to "borrow" my two very good and expensive extension cords, again I thought odd. He had one but it looked old and worn out.

Well, about 45 minutes later, I look out and he is GONE! I went out, and the house was NOT WASHED PROPERLY! He did not used any cleaner, and I could tell places he never bothered to really get the dirt off. (By the way, stupid me, and I know better, I guess I was just sucked in to his "story", because I paid him $5,000.00! Up front! I never would do that, so I guess I was just pulled into this bull. But, a couple of days later, I had not seen or heard from him, and he finally calls several days after the last time I saw him, and said he was waiting for the wind to "be very light" so he could paint.

 (He was painting the white with a sprayer). So, the next day, I leave to go to a doctor's appointment, and this again is at NOON! I had not heard a word from him, BUT I LEFT A VERY LENGTHY NOTE STATING THE THINGS HE "MISSED" some rotten boards, in fact several, and other stuff including "ruining" my doors on my storage building, because they were already "fragile" and he pulled them out of the tracks, and they were falling into the building, so he just "locked" it so it would hold up the doors. And he had also "borrowed" my weed eater, to get the ivy from around several places around my flower beds. But he NEVER pulled OUT all of them stems etc, which HE KNEW needed to come out so that they would not be left under the house, he messed up an entire two front beds and a side bed of my ground cover and Ivy, and almost ruined ALL of it! Plus I have # HUGE house plants, (I put my house plants outside on my porch during the warm months, they do so well)..he had just pulled them off a HUGE Boston Fern (probably 10 feet around), A HUGE PALM that stands over 7 feet tall, another huge house plant that is about 7 foot tall, and several a bit smaller plants, after me telling him he had to be cautious and they could not go in the direct sun and lots of wind...

he pulled them all out in my front lawn and left them in the sun, and I will be fortunate if they live! These plants would now be worth hundreds of dollars, if you had to buy them as huge as they are! He had "sprayed" the white, but places were "missed" had very little coverage where he had sprayed, he got "overspray" all over my lights on the front porch, all over all of my windows, on my mailbox, my front porch, everywhere! And when I asked him about all of where it appeared there was very little paint etc, he said "well I put 2 coats on) and I said well then you need to put a 3rd coat on, and cover up all the places he missed PLUS never FIXED ANY OF THE ROTTEN BOARDS HE JUST PAINTED OVER THEM! So, I go in it was hot my two pups one of them only about 8 weeks old, needed me to get them out f their kennels, and love on the little one, settle them down, change my clothes etc. I looked out and HE HAD JUST LEFT AGAIN! Not a WORD just Left, and LEFT THE LENGTHY LETTER I LEFT FOR HIM ON THE GROUND! So again I hear nothing for 3 days or more. Then a week ago today in fact, he shows up and starting "painting the red trim" around my front door. I asked him about closing the windows so he could spray and he said he was "through" spraying the white and was going to paint the trim! He spilled red paint on my front porch, did not paint but about 12 inches of that, left and again never said anything. I happened to have a "nurse" that visits me once a week here, so I was in the house busy with her and he had left within 15 minutes or less! So, I go a week and try to "contact" him on messenger on Facebook, and he proceeds to tell me that "he came by" to "paint the red" several times and I was "not home" and my neighbor told him he did very bad work and he should fix all he has made a mess of. Well, I had no clue my neighbor had seen him. Plus I don't think he had been by because for the most part I had been at home over that weekend and for the next several days until this past Wednesday. So, I believe that was a lie. He said since I was "not home" and he "paid for gas to come over several times" that he was not doing anything else to my house!

 Then he typed out a message with all kinds of misspelled words (this guy is supposed to have a business) and told me "Have a Good Day"... So, I am OUT OVER $5,000.00 WITH ABOUT ONLY 50% of the WORK DONE, AND HE LEFT ME HANGING. Then I go and begin to try and find out , AND ALL OF THE JOBS HE LISTED ON HIS FACEBOOK PAGE WITH ALL OF THESE PHOTO'S NOT ONE PERSON SAID HE DONE THE WORK, OR HOW GOOD IT WAS ETC. I think HE DID NOT DO ANY OF IT, AND HE JUST MADE PHOTO'S OF SOMEONE ELSE'S WORK AND TOOK CREDIT). WHEN I began to "research" things he has complaints against him, he has lived in about 8 places, and has used about 10 different names. PLUS HE TOLD ME THAT THE Hardie Board he put around my house was "$700.00" more than he thought. Well, if he was a true businessman, why would he give an estimate and not find out how much the materials were 1st? Plus he told me that him, "his wife and 3 boys" were getting "kicked" out f their home because the guy they rent it from, "sold it and did not tell them". He said the "new owners" knocked on the door one evening during the time he is doing "my work" and told them they had 15 days to "get out"... well now I know that was a lie. He was "trying" I think to "play" me for more money. I think he thought I would "feel sorry" for him and give him more money. This "guy" knew "exactly" what to say to me, after me telling him I was disabled, living on a very small amount of money, that I had saved this money up for a long time to get my home "fixed" so it did not fall down around me.

He heard me say I had Lupus, RA, Sjogren's, many surgeries, a fractured hip six months ago, SO HE PLAYED ON MY PORTION by telling me that "his MOM" had Lupus, and just how terrible it was to watch her go through it, and blah, blah, blah... he was "playing me" and as I said i am NOT one to "fall" for this, but I guess I needed the job done, at the time had not "found" anything bad against him, although due to "recent" posts here for one, I did FIND OUT JUST WHAT A LIAR, A CON MAN, CROOK AND A SCAMMER HE IS. His "business name on Facebook is "BD HandyMan" Service and his facebook URL is:  https://www.facebook.com/bdyourhandyman/ other places he has lived  TX, Lancaster, TX, Irving TX, Red Oak TX, Arlington TX  Midlothian TX is "where he claims" he lives and his business is at Tio's Tony's but he had addresses I found in Duncanville, Lancaster, Red Oak, Irving, and Arlington all in Texas other addresses 606 Middale Rd, Duncanville TX 75116

Saturday, September 16, 2017

FINALLY NEW ACTERMA APPROVED AND HERE FROM HUMANA! Good Gosh TOO many ISSUES around the House, Not enough sleep with the new puppy, trees, painter is an idiot, faucet leaks, and you name it, I've had heck...

Good gosh! By the time you read all of the information on this new medication, you may be too frightened to even try it! I've been giving myself injections with the other RA medications, some are in a "pen type form" which makes them a bit easier to use. I also give myself B-12 injections each month, with an "allergy medication" type syringe... and although I know they can cause all types of issues like TB. severe infections and so forth, this particular one has been "very rarely" known to cause MS (Multiple Sclerosis) which I don't believe the others were apt in very rare circumstances to cause MS. Anyway, this one is in a "pre-filled syringe" rather than the pen type. 

So that makes it a bit more difficult at first to get used to using. It f course has ONE HUGE set of instructions about "main side effects" how to give yourself the injections, and so forth, then there is a 2nd very LONG paper on ALL OF THE THINGS IT CAN CAUSE, SIDE EFFECTS, AND THE information that is more for the doctors - the medication guide, which of course is extremely detailed. Anyway, it will take me 2 days to just read through it all! I've already done research on it, from the website, but I am having heck again being able to sit for very long at the computer. Now that the one hip is injected and it feels somewhat better, I have the "lumbar thing" I think going on, because today I have pain down my legs, which is usually more about my lumbar sacral spine issues that just the hips. I can't win for losing LOL Plus I am just exhausted. I've got so many things I need to do, and I finally BOUGHT THE FLOWERS to take to the cemetery for Mom, Dad and my Grandparents vases.. plus I have some here at home I think I will put with them so I will have them a bit more full. 

Danged silk flowers are so expensive, and if you buy the 97 cent ones at Wally World or the 1.00 ones at Dollar Tree, then you need twice as many to fill the vases full enough! But, I am just too tired to go out and do them right now. The new puppy Bella has been waking me up at 3AM, most mornings, and then she gets me up, I get my coffee, sit down to watch a bit of Netflix and then SHE GOES BACK TO SLEEP dammit! LOL! But last night, she woke about 1AM, I took her to go to the bathroom, and she got a drink, and I put her back up with me, and she went right back to sleep! :) BUT THEN PEANUT, MY TWO YEAR OLD TERRIER, for some very ODD reason, woke me up at 3AM! He was standing pawing at me, and he wanted me to get up... I kept wondering and asking him if he heard something (but he was not barking) or if he was sick or what. So, then of course he wakes Bella up... Well I never figured out WHY or what he wanted! But of course I say to heck with it, get my coffee, and then BOTH OF THEM GO BACK TO SLEEP, ONE ON EACH SIDE OF ME!!!!! OMG! I was like danged I get one to "behave" and the other one acts out! The "only thing" I think he may have woke me up about, it that he has "seen" and basically "caught" a couple of those little baby "salamander's that I STILL CANNOT STAND! But, they get on their paper under the plastic, and it's slick so that can't get off of it... so I've noticed him looking all around the house sometimes, because I think he may see one, I know a couple of weeks ago, we both tried to get one and the little devil got up under the door and disappeared, before I could get him!!! I HATE THOSE THINGS!!! EEEWWW!!! they creep me out, but I will either swat them, or I have made spray from "hot pepper sauce" which nothing "hurts them" dammit, but it will make them run the heck off my front porch... so sometimes if I can't reach them to swat at them then I keep that spray out with me at night, and spray them. They then fall, LOL, and run off. Anyway, the little babies sometimes get in under the door from my laundry room to my kitchen, and that is where Peanut has pawed a couple, then he gets me, and knows I will finish them off and throw them out!!!! Then My crepe myrtle trees are just worrying me. 

They look so bad, especially the one out by the road. I've not been able to really trim it like I did the others. and it's so full of dead limbs'- I did take my pole saw, and cut a few limbs out of it, and then a couple out of my one by the driveway.... I found out they probably have aphids, for one, but trying to spray them even with regular insecticidal soap is almost impossible because they are so huge. I need a sprayer to go onto the water hose like my Dad used on his Pecan trees... but I threw mine away because it was worn out... and have not gotten another one... plus I CANNOT FIND MY CHANNEL LOCKS! I am so peeved, I have a pair, and then I have other plumbers wrenches but they are too huge. I do have a leak at the spout bottom and I probably need O-rings. But, I was going t take the "ring" loose and see for sure what parts I need, and I don't have the wrench I need to loosen that "decorative" piece over it... and now after reading, it may not even "screw" at all, but just "pry's" off. I've tried to find the right directions. I found the parts, but I can't find exactly mine to know if that piece that fits over it unscrews or if I just need t pry it up, I know the knobs well. I've replaced the cartridges in the hot and cold water faucets several times. 

But, this is the 1st time I've ever had it to leak at the bottom of the spout itself... so between that, and the "bar" the holds my hand held shower sprayer up in my shower that a piece broke off, I glued it back, and I knew it would not hold very long. I have a hand held shower sprayer that I got from TXU and it's heavier that the ones that came with the shower. Plus the tub is now 10 years old, and the "bar itself" is metal chrome, BUT the two pieces on the top and bottom that hold it up are "plastic"... so a piece that holds that screw into the shower wall, broke off inside that plastic piece... Since I have TWO hand held showers one on each side... I am going t try to "glue it again", take the piece off the other side, use it on my side, then put the glued one over on the side I don't use. I can then just eve eave the sprayer off of it completely, that way it won't have weight on it... but I've got to do something. I've left the screw itself in place, so I don't have water leaking behind the shower. 


Just a bit of ALL THINGS NUTS THIS PAST WEEK OR SO!

Talk about "one of those WEEKS!" I've been FIGHTING with the insurance for 3 WEEKS to get my new RA Medication, finally yesterday they called and it should arrive tomorrow, (hopefully, but talk about bad mess... I has to go have blood work done for an appt in two weeks, then went to the hospital to pick up my bone density scan results, from there I went to Waxahachie and sure enough I have bursitis in BOTH hips (as I tried to TELL MY OTHER ORTHOPEDIC SURGEON WHO WILL NOT GO ALONG WITH ANYTHING A PATIENT SAYS) OR SUGGESTS... so I got the left hip injected and go back next week for the right one... 

I got home and the "guy" that I hired to paint the house, and do the new boards around the bottom, had not shown up for days because he was going to "spray" part of it, and it was too windy. I didn't leave until NOON and he was NOT here when I left, but the doctor was over an hour late, so I didn't get home until after 3PM... mu little puppy was upset because I put her in the big kennel rather than lock them in the kitchen... it was cooler in the living room, and then her and Peanut don't pick on each other if I am gone (LOL) 

I think Bella the 9 week old picks on Peanut more that is 2 years old... then I drive up and here are ALL OF MY INDOOR HOUSE PLANTS, THAT ARE ON MY PORCH, SOME OF WHICH CANNOT JUST BE THROWN IN THE SUN, AND HE WAS THERE TO PAINT, BUT THROUGH ALL OF THEM OUT ON THE YARD IN THE SUN! Then I HAD TOLD HIM I WANTED ROTTEN BOARDS REPAIRED IN THE BACK, AND THERE ARE ROTTEN PLACES ON THE END BOARDS, ETC... NONE OF WHICH HE HAD FIXED, I also left a 3 PAGE MESSAGE ABOUT WHAT I EXPECTED, SAME STUFF WE TALKED ABOUT WHEN HE GAVE ME A QUOTE... and he was about half "pissed" at me... and HE WAS PAINTING, GOT OVER SPRAY ON MY WINDOWS, MY MAILBOX, ON MY FRONT LIGHTS ON THE PORCH AND HAD NOT FIXED ANY OF THE ROTTEN BOARDS. plus the paint he sprayed he cannot think he is not going to spray another coat! It looks like I took a "can of spray paint" and tried to paint my house with it! 

Anyway, I had put chili on in the crock pot before I left, I had to come in and calm the little pup down, and she peed all over me! LOL!! And calm the other one down, Peanut was all upset over the paint and the noise... he even painted over OLD CHRISTMAS LIGHTS, THAT HAD BEEN UP ON THE TOP WHERE WE NEVER GOT UP AND TOOK THEM DOWN, THEY WERE THERE WHEN WE BOUGHT THE HOUSE, and he KNEW they should come down, HE PAINTED WITH THEM UP, AND DIDN'T GET RID OF A COUPLE OF LIMBS FROM THE TREE AND HAD PAINT ALL OVER THOSE, paint on my ELECTRIC METER!!! 


Of course NOW, my "rod" in my "big honkin' shower" that holds my handheld shower device up" had a piece break off where it's screwed into the shower wall. Well, I think I found one, if it is the right length, and I believe it is, but just another damned thing to fix. I tried 'gluing" it, and put a "ring" in there to help hold it, but I figured with it being plastic as far as that piece it would not hold for long. So, after about a week, it broke off again. I have two. 

One on the other side I never use, but I still would have to find a way to get that bottom piece to at least hold up that bar. I could leave the hand held shower piece off of it, so no weight is on it... I think I can buy something to fit, just as I said something else to aggravate the crap out of you... and I am so worried about my Crepe Myrtle trees - I think they have either a type of Aphid on them, or what they call a black powdery mold... both can be "fixed" but I just cut another huge "dead" limb off one. The thing it they are about 30 feet at least tall... taller than my house, and have been that tall since I moved here in 2006. So, I know they are getting old. I read that these can last 50 years... but this house was built in 1950. 

I don't know when those trees were planted but they have been here a very long while. I can't stand the thought of losing even one of them. They are one reason I bought this house. They are just gorgeous... pink blooms all spring and summer, then in the fall the leaves turn all of the beautiful autumn colors, and the "bark" peels off of them at a certain time of the year... the 1st time it happened it scared the heck out of me, but it is one of their unique things, so then they have this "patina" almost kind of look... but again I have so many dead limbs, some small but some pretty large... and then just didn't bloom as they usually do... they have LOTS of buds on them, but they are just not opening like they usually do... part of it is the "weird" weather because of us having almost a "spring" like weather so early this year, they bloomed earlier, and now they should still just be filled with hot pink and they have loads of buds but not many are opening... then my Oleanders didn't bloom this year at all. I planted them like 3 years ago, and they have been fine. 

But, this year all I have is "greenery" but not one bloom all season... it 's just a pain in the butt... and of course my damned storage shed doors are screwed up, and I found a "kit" with the new "plastic" gliders etc I "think" will work, but heck again, trying to research, find it, wondering if it will work, and now my faucet in my kitchen, which I've repaired the hot and cold sides several times, and keep spares for them. But, the middle spout where the water comes out, has "appeared" as if it is getting wet around where it goes into the faucet.  

At first, I thought it was just from me, washing it, or getting water on it, but now it feels "loose" so I think it needs a part in it... again now I have to do the research on that faucet, and find out which part that is and then order it.... OMG! sometimes I just think selling and moving into an apartment would be easier..no maintenance, no lawns, no trees, no stuff to do the yard with, not having to deal with "pests" in and out of the house, and so on, no painting inside and out... YOU call THEY fix! LOL!!!

Wednesday, August 9, 2017

SICK and TIRED of the "stigma" placed on so many of us with Chronic Pain and just how horribly it effects our lives, I feel it's time for me to step up and also state my feelings on the subject!

For a long time, I've kept my "mouth shut" when it comes to the business over those who want to make EVERYONE, with Chronic Pain and Chronic Illnesses, look like a bunch of junkies! But, I am just too fed up with it! It's gotten to the place that rather than focus on other countries who could destroy our nation with bombs, or talk about how to "help" those with pain problems, or use their talk to make available more research dollars, funding to help those who are ill, rather than make us all feel as if we are doing something wrong. 

As I use the example of someone with Diabetes, would you take away their insulin? A person with high blood pressure would you deny them medications to lower their blood pressure? I've been thru just about every type of other "pain reliever" you can imagine. chiropractors, injections into my spine and occipital nerves in my neck, injections into just about every joint on my body, I am on several medications for the Lupus and RA, yet some other medications that I had MANY SIDE EFFECTS FROM, that were supposed to help with chronic pain, I have every surgery that is a promise to help my pain, I walk daily, I don't stay sedentary, I try and do all I can to ease my pain. I've gone through NSAIDS that can cause me to have another heart attack. 

My 2nd MI partially was caused from chronic pain, and after the fractures to my hip, my pain level increased, due to many things such as the change of my gait, my neck in such bad shape, that he has to "stretch" it 2 INCHES, because I lost that much disc space... So, I KNOW ABOUT ALL F THE alternatives. Some of which work wonderfully for some people. I am thrilled that some find relief from things such as Gabapentin, which caused me to "hallucinate" even on a small dose. So, after going through SO MANY YEARS, of every type of other treatment available, what "works" for me, may not be what works for someone else. "Chronic Pain" in itself is extremely complicated. Due to having SO MANY CONDITIONS, that can cause this type of pain, it's taken an "army of physicians", medications, treatments, surgeries, injections, therapy, you name it, I've done it to find "what works" for me, with the least amount of side effects possible. 

So it just "burns my butt" to hear the crude and down right stupid remarks some say about us patients, that live with pain daily. I give a good example. I had NO CLUE, HOW PAINFUL, a fractured hip was, UNTIL IT HAPPENED TO ME! That was one of the most excruciating times in my life, as far as pain goes. OMG, kidney stones are horrible and unrelenting at times. But those two fractures of my right hip.... were almost unbearable. Every tiny movement caused me so much pain, I thought I would go into convulsions. Even being put on the stretcher and taken over my lawn to the ambulance, I was literally screaming, crying and probably cursing so badly and loudly, all of my neighbors heard me! I even waited over 2 HOURS, before calling the ambulance.
  


I wanted to "make sure" I had a fracture, and not just a "bruised hip" before calling the ambulance. Then them trying to do an X-ray or moving me in any way, I shook and screamed in so much pain. And those things are "acute pain" issues. So, you take some of those and put them with someone often daily or many times in a month's time, and see how well they would function in life for very long. I tend to be one of those people who try and not "show my pain" or illnesses in public. But, believe me just because I am not limping or using a cane, or whining and moaning in pain, does NOT mean that it's not there. So, some of you may get sick and tired of seeing me post about all of this ridiculous uproar over this so called "crisis", but I intend to keep on getting the word out as much as I can, and supporting EACH OF US, who would be "lifeless" if we had to withstand chronic pain and illnesses without any type of relief. 

The LONG LIST of illnesses that can cause relentless pain are endless. You can have "diabetic neuropathy", many different types of arthritic illnesses, autoimmune illnesses and syndromes, nerve pain from degeneration of the joints, of bones, of the spine, migraines of many types now, TMJ, FM, torn muscles and ligaments, surgeries sometimes can cause pain, "neuralgia" comes from so many types of illnesses, whether sciatic nerve pain, from a lower back issue, or pain in the arms, wrists, fingers, from a cervical neck problem, or from problems with diseases causing bone pain, cancers of many types, all types of "myalgia's", torn muscles, chronic sprains, cartilage gone in joints, certain types of chronic bladder problems, certain intestinal chronic health problems, and the list goes on and on about health conditions that can cause or contribute to chronic pain and chronic illnesses. 

I've decided that I am going to "fight" as much as I can online, with petitions, letters and such the ridiculous claims that "everyone" who takes a pain medication is "addicted" or an abuser. Whether it be governmental bodies, the DEA, the FDA, or the President, (HOW CAN any of those people who have NEVER HAD A SEVERE AND CHRONIC PAIN DISEASE POSSIBLY UNDERSTAND OR KNOW ALL OF WHAT WE GO THROUGH IN A SINGLE WEEK?" ALSO, I am SICK OF the health insurance companies "calling" constantly, wanting to "go over" your medications "over the phone" when NOW THEY DON'T EVEN SAY WHO THEY ARE ON CALLER ID! Now rather than saying the name of the company, Caller ID usually say "1-800" number calling... how do I KNOW THEY ARE WHOM THEY SAY THEY ARE? Why do I want to "discuss" something that honestly, is NONE OF THEIR BUSINESS! That is between MYSELF, MY PHYSICIANS, and if I NEED HELP, MY OWN PHARMACISTS? It is insane how many calls I get from so called health insurance, wanting to discuss, "this, that or the other" about my "health".... I HAVE A LIFE TOO, and I don't care to sit on the phone for an hour telling a person I don't know and have no earthly idea who they are about my medications or anything else for that matter!!!!! 


We are WARNED AND WARNED ABOUT NOT GIVING OUT PRIVATE information over the phone to those we don't know.... so this is a prime example of what irritates the hell out of me!



I got a call earlier in the week, from a "guy" who I didn't even "understand" asking for me? He never said where he was from, or whom he worked for, and then when he mentions my medications, I got irritated and told him I was NOT at that time discussing it with him. In the first place, THE MAJORITY OF THE TIME, THOSE PEOPLE EITHER CANNOT SPELL 

MY MEDICATIONS, OR THEY HAVE NO CLUE WHAT THEY ARE FOR! Why should I have to "explain" those things over the phone to anyone????



So, some of you may get sick and tired of my ranting on the subject, but enough is enough!













Sunday, August 6, 2017

The Memories of Life BEFORE Chronic Pain & Illnesse"S", thoughts of simpler times, knowing one should NEVER be "complacent" & not share your feelings, all too often "we" lose out

In The World We Now Live In, All Too Often Many Of Us Remember Times that were Simpler, Many of Us Without Chronic Pain and Suffering, not Fighting to Get Into See Physicians, or Fighting to Get Insurance Companies to Pay the Bills. We also Were Not "Surrounded by A Sea of Specialists" Parents and Kids Never had to Be Concerned Over "kids Abusing Drugs", we could Leave Our Windows Open, Our Doors Unlocked, Those Time When a "Mean World" did not exist. You Could Walk down The Street, You could Drive down The Highway, Kids could Play in Their Yards, We were not a Country, And World filled with Violence, Hatred, Bigotry, None a few years ago would have been a "Suicide Bombers" or 'Home Grown" Terrorists; in fact any type" of Terrorists

 

 

Time were filled with good memories, vacations with families, getting together with the Neighbors, Having a "treat" of a Hamburger and Fries on Paydays. Deer Hunting, Fishing, and Our Minds Filled with The Promise of a Brighter Future... now WE LONG for those times that gas was .50 a gallon, and $10.00 would buy enough groceries for a month. We have such gratefulness and I know for myself, a "Longing" to live in "that World" again...

 

I had been "going over" all kinds of memories, good times. lousy times, and all of the "quickness" of how time goes by. My daughter and I were talking on the phone yesterday. She had taken the boys to get school shoes and clothes. She was saying that of course Logan, the youngest, still has a "school supply" list, yet James, who it just dawned on me, my oldest Grandson is going into JR. HIGH SCHOOL this year. So, of course they wait for many of the supplies because the teachers will want different things. That got me to thinking and remembering what seems like just yesterday, that Amanda and Jimbo brought James up from Corpus, he was only about 6 WEEKS old, born on December 6th, 2005. I had really just moved back to Texas, after being in Seattle for almost 5 years, and only had been back myself for about 2 weeks or so.

 

I got to looking at all of the photo's over the years, how little James was, then Logan, who is almost 5 years younger than James, is also getting much older, growing like a weed, and is now I believe 7 and going into the 2nd grade! Heather my Granddaughter, who was only 2 years old when Amanda and Jimbo began seeing one another, is now been out of high school over a year, and is starting on her 2nd year in college, working, and getting ready to go to nursing school probably next spring. As I thought about my years, my hopes, dreams, possibilities, the things I accomplished, things I wished I had accomplished, and that "list of deals, times, events, and yet dreams" of what we "hope" we get to do, before we are "no longer here" on this "plain" and have stepped into another realm. I've been blessed with the incredible children, grown, never was into loads of trouble, drugs, causing problems, both have the high school diploma's and have some college, certificates and so forth. I had a son in law that is that is the most caring, nurturing, loving, comforting, care taking husband, son and Father I believe I've ever known.

 

 My daughter and him met when she was about 15 years old, and as of today, and what will probably be the rest of their lives, that have a stable, happy, loving home, with three incredible kids, and they are blessed, and I am blessed and a better person for my daughter, son and son in law. When I think about how much I "missed out on" from my personal ideology that I so wanted to accomplish, I began pondering that first of all, when I was in school, and for the most part when my kids were in school, there was NOT a great deal of "meanness" of drugs, of those who choose to terrify other kids... life honestly was much simpler, especially when i was in high school. Yet, the very things I felt I would either "do" etc in my own personal life, much I never accomplished. I wanted to be a nurse, and in the medical profession, from the time I was about 13. I began my "writing" at 14, and felt I would be compelled to be a very accomplished author in the time to come. I wanted to travel much more, even overseas to many of the European countries, yet I've only been out of "the states" once, and that was to Mexico. I never even got the chance to go up to British Columbia when I was in Seattle.

 

It happened that I went shortly after 9/11, and things at the borders had really changed. In fact, I never owned a passport. I've seen many of our states, had many vacation from those with my parents, to those that I took my kids on, to those I've been with someone else, and then even by myself, to Austin TX, to Lancaster CA, to Phoenix AZ, been snow skiing, and have had many great experiences, even though I also "missed out" on many, that for one reason or the other, life turned me a new direction, thus I did something else, other than what I "thought I would".... at 57 years old, and suffering from several chronic and severe illnesses and pain, it makes it more difficult that when I was younger and in better health to jump up and spend a weekend in San Antonio, or go to Dallas dancing, or just for a night out on the town...

 

 I still have "some of those dreams" on a list, I don't really like the term "bucket list"... for some reason that just does not sound correct to me... but I have come to see that life is a challenge and LIFE FLIES BY TOO QUICKLY, you blink and you are in college, and you blink again, and you are over 50... pondering over where the time went, and why you did or didn't do some of the things you did. I've had many people over the years ask me how I "withstand" the illnesses and pain... 

 

well "faith" and "hope" along with what little bit of family I have, along with my "fur babies" keep me trudging forward even when i feel like throwing in the towel. So, tell everyone you love, that you love them, every chance you get, never take one moment for "granted" for the next one may not be there, never pass up an opportunity, if you can, to do something you have always wanted to do, be kind to those around you, be courteous to the elderly, those who are suffering, and even if you don't "give financially" giving FROM THE HEART, and with NO expectations, other than it made you feel good to do something... for coming from the heart and soul, is truly blessing someone else. I sit here today, alone, well Peanut is here, but no other "human" - and I do get lonely, I do at times feel that I've "failed" at marriage more than once. But, in my heart of hearts, i do cherish the "love" I've had, have and maybe someday have again.... Thanks to each and everyone of you, that give me a "lift" when this life seems to "weigh me down".... for you are a true blessing yourself....

Saturday, July 29, 2017

AS I post this, and see how many concerned people come to my blog over the Healthcare Crisis I spoke about... I continue with things I usually don't discuss - Our Political "Future" and the Effects on All, Especially the Chronically Ill



As I watched the Night New last night, and once again, the "fight" over Health Care, continues to cause many, many of us terrible stress. Either we are ill, or have children or other family members ill, or cannot afford the outrageous and constantly rising costs of healthcare and health insurance.

Believe me, after the hip fractures last December, then the cervical neck surgery this past April and the RIDICULOUS CHARGES FROM MY DOCTORS, FOR A CERVICAL BONE STIM DEVICE, TO the the rest of the charges from an ambulance, to the radiologists, the anesthesialogists, to medications, and more, it is like that governments just soon us to "die" rather than "burden" the nation with our chronic health problems.

But, look at "John McCain"... you can bet the government is making sure he has the very, very best care, and all of what he needs to hopefully survive the tumor they found. Which of course I hope so also. I "no matter what "party" I lean towards" would not want anyone in our governments bodies to be ill and pass away.

But, those Congress men and women, and all of our governmental people get the best care the rest of their lives. Even after they are no longer involved and "retire" they still are well taken care of, with pensions, healthcare and benefits.

Which I am not putting down, BUT WHAT ABOUT ALL OF US THAT ARE HERE SUPPORTING THEM? Their own constituents that are the ones that "vote" them in? I am sorry but our President is just not the right person for the job. Not when it comes to many things, he just does not know or understand how to handle. And this constant "tweeting" of major information I feel is somewhat ridiculous. Not ALL that goes on, due to many reasons, needs to be "tweeted" over the world!!!!!

Here is my post from Facebook, as to what I went through last week with doctors and now more health issues that I am fighting with...

I'm totally exhausted! Yesterday having 2 doctors appts in Dallas, that were scheduled one for early morning and the other mid afternoon in two totally different locations, about got to me this morning. But, my son and I did have a great time together. I was glad he went. We got to talk about lots of things, as well as he got to see my Rheumatologist and my Pain Dr. whom he had not met either. I wanted him to witness himself what fantastic doctors I have, and he immediately saw that my Rheumatologist was truly a "God-send" as well as my Pain Doctor also.

But, now my Rheumatologist wants me to see another "specialist" which I did not even know existed, which is a Metabolic Mineral and Bone Specialist, mainly due to the Osteoporosis, in which he was extremely concerned due to those that have "fractures of the hip" especially due to osteoporosis, have a 20% HIGHER mortality rate than those without one and without osteoporosis, plus just having the RA and Lupus, already leads me into a higher possibility of not "living as long" as others without it. This doctor also may have other options to "treat" the osteoporosis, and may provide answers about why I'm having the "chilled totally drenching night sweats, since this could be related to an "insulin" problem with my metabolic systems, which can be a "parathyroid" which is NOT related to regular "Thyroid conditions" and other issues that may lead us to find out more about chronic health illnesses, that maybe what I could be having and don't know it. So, I have to have another bone density scan next week on Tuesday, then schedule an appt with the specialist at at SW Med Center in Dallas.

I have to have the scan and results to take with me, so I am waiting before I schedule the appt. Hopefully it will be soon, so we can find out what could be going on, which as he also said, I am a very "complicated" patient, which ALL of my doctors say, so we shall see. Then I had my pain ump refilled, and I guess i should have "insisted" he up my meds. I am in so much pain again today, I am about in tears.

 Also he thinks my finger problems, are eczema, so he called in some oinment for those increased my Sulfasalazine, by 500 mg more twice daily, and if we don't see results in 2 months then we probably will move on to Acterma for the RA... the Enbrel may not be dong it's job, if by 2 more months I am not much better. So, again a med change... probably.... anyway, lots going on, and I hurt like hell... but I've got to get out briefly for a couple of things, then I hope to have myself on the sofa. We have yet another horribly hot day with "heat warnings, again... for about the 5th day.... I will probably not post much more today, just wanted to let you know a bit about my appts yesterday...

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?

Sunday, July 2, 2017

Fourth of July Already here, Time flies by too quickly, Cervical neck ongoing getting well over surgery, lumbat/sacral surgery, osteoporosis,bursitis.RA,osteoarthritis, and living....

SUNDAY ALREADY! SEEMS IMPOSSIBLE HOW THE DAYS, WEEKS AND MONTHS ARE FLYING BY SO QUICKLY. I am so "bored" with everything. I did put up my window "cling" that looks like stained glass. I love it, found it when I first moved into this house and put it on my front windows. It has been there about 10 years or really I guess more like 11 years, and it still looks awesome. So, I decided to put it on more windows, especially those that face where the sun comes in especially in the evenings. It looks wonderful and comes off easily, never fades, and does look like stained glass. I have 3 brand new mini blinds, that I've had for weeks for the office. One of mine was just about to come to pieces so I ordered all three new, so they would be the same. The others were old and getting to where even trying to wash them would be nuts. 

The less expensive ones are much to difficult to try and wash, and it is less hassle and cheaper to just buy new ones, since these have probably also been here 10 years or more. Right now after the rain from day before, and the cloudy weather over the past several days everything is so wet, between rain and dew, it's hard to get outside. I thought about going over to the walkway the city built buy one of the small lakes, not far from me... I broke down and bought new athletic shoes, Sketchers, a couple of weeks ago to walk in. I have some but they were really not enough support to walk very far in, so I broke down and bought better ones since I really need to be walking as much as possible. But, my street is so damned bumpy, and narrow, it's difficult to walk down it, and not get ran over. 

People run the stop sign right here at my corner one house down from me, and it's a wonder someone has not killed someone as fast as they drive down this street, especially with the kids out of school and the ones on their bikes, that are too young to really be riding out there with no parent supervision, but I see it all the time. A week or go, I looked outside and one little girl, about maybe 8 to 10 was riding right down the middle of my front lawn!!!! I was so pissed, and stepped out and told her I had better not see her, nor any of her friends riding through my lawn again! Parents don't watch and don't care, they just let them do as they please. It was so rude, and I told her, don't you know it's rude to go through someone's yard without permission? She just stared at me, and finally rode off. 

Anyway, I am not sure about the whole hip and thigh pain. I am thinking now since "both" hips have pain in them, and almost in the same spot, my left one I can trace the pain in it... and I think I may have either bursitis in both of them (which I have had before I broke the right hip) and have had them injected before, a couple of times. In fact about 4 years ago, I did have severe pain with both of them, and my orthopedic surgeon at that time, did inject the both of them at the same time. A bit later, my new Orthopedic surgeon, who does my neck, and did my right shoulder replacement told me it is my lower back making my hips hurt, and L-5 and S-1 and bursitis may or may not be the problem. I surely don't look forward to any other spinal surgery, especially lower spinal surgery, since so many horror stories come out of back surgery. 

But they have improved their process, the way the do the surgery, and what they have including "artificial discs" they can put in place of discs that have ruptured. That is what they did with my neck in the first surgery. One of the levels, he put a disc in place. The other are "fused" with cage and chips of bone from the bone spurs I had, rather than using artificial materials, or donor bone, they try and use your own, even if they remove it from a hip. I read they can do that, but with me having such severe osteoporosis, I imagine they don't take a chance of getting bone from any place else on me. Of course after the fracture to the right one, they would not touch it, but my issue is after reading, I am wondering down the line if I may have to have a total hip replacement, where he repaired it with the gamma nail and screws. I've read and that maybe what is already happening, that hip is developing arthritis in it, after the fractures and repair. 

So, between bursitis, which can even be "infectious" where they have to drain it, and probable arthritis, that could be what is causing pain in the right one, and my left one maybe effected by either osteoarthritis, or even the RA, which is what my 1st cousin had, RA that caused him to have finally both hips totally replaced. I've been trying to keep up and keep busy, but when you cannot or should not do things where you have to hold anything over your head heavy, etc, it's difficult to find things to do.... after having my neck in the brace for so long, I have come to realize how much you do that effects you having to move your neck up, down, sideways, and every which way, from driving, to putting up these blinds, to even sitting at the computer, potting plants, and even laundry, cooking, cleaning... you name it, even taking a shower, or like me wanting to have my hair cut, she usually has to have me bend my head forward to get it short and cropped in the back, but I need it cut so badly, so I may have to have her improvise, cut it and just do as much as she can without me having to bend my head forward etc... I don't think I can go another week with it as crappy as it looks. 

Honestly, I've almost thought about "razoring" the top and sides myself. I do usually when it is cut very short, and she razors it. So, I've thought about using mine and just get the horrible ends off of it, until I can see her. I just don't want to "chop" on it too much and then she can't cut it like I want. I let it grow out again longer, but now with it so hot, I like it really cut short... where I can put my "goo" on it, spike it up and go... no brushing, hardly no blow drying it, by the time I wash it, towel it off, and run my fingers through it, it's dry and I can put my "goo" in it and go.... no fuss no muss... I love it that way, and the way it is now, I am really better off doing it like that, especially if I am having more surgery in the next few months... I am really not sure what the hell I will do about my lower back... when it gives me so much hell, and I am in so much pain, I want to sit in the floor and scream, cry, and feel as if I am going insane, I want it "fixed"... but the idea of a lower brace, probably much more "time healing, and getting it well enough to do things," then I want to "back off" no pun intended, and say I will just put up with it... but I also know it won't get better over time... it will just get worse....

Tuesday, June 6, 2017

What in the World is going on in our World???? And How Do We Feel Now About putting our "Medical Life stories" out there to help others?

I've kept quiet for the most part when it comes to politics, all of the terrorists horrid and unspeakable acts, and all that goes along those things, from emails being "hacked" to the nightmare of situations in Britain, we "swear" we are not going to "cow" down to these happenings and allow them to change our lives,

Yet that HAVE! They have changed the way we live forever. More people purchasing things to protect themselves, whether it be a gun, tazer, baseball bat, or a large heavy flashlight. I am not trying to be "funny" but there are those that are not as thrilled about some types of things for protection, so like myself, I do have a baseball bat, Mace, a small Tazer, and I do have a very HEAVY flashlight.

What really has come to my attention through all of the "political" dilemma and all of the horrid things happening in our county, from Florida to California, to right new me in the Dallas TX area, is that people are now so "cautious" and concerned for their "Well Being" from those who may want to harm us, that things like our own "health matters" seem to be put on the back burner.

I have noticed that all too often there is SO MUCH taking up the internet, the television, everywhere we turn, that anything to do with health, from heart attacks, to RA, Lupus, and other Autoimmunity or Arthritic Illnesses seem to not be mentioned as much.

In fact, I feel that many of us feel "off" trying to discuss our medications, especially pain medications. Here I have been a blogger for many years, and have a Facebook, Twitter, Pinterest, and other forms of online things where I can reach out to others, yet I am almost in "fear" of talking about pain medications. They have gotten such a horribly bad "rap" that some of our very own "key words" we may use in a post on any of these, you worry if they could be misunderstood, or taken in the wrong context. 

I've often said that I try to stay away from talking or writing about "politics" and anything to do with "religious beliefs"... those things are very, very personal for many, and while some can tell their stories about their religious beliefs, there are some that feel it is a private matter. They may not want to talk about it with someone "online".... and if you do, then you kind of wonder if you could be "targeted" again for making a statement that could be taken wrong.... by anyone.

We also feel that used to like myself, I could put my story and "myself" out there online, not worrying about "hacking", or someone getting mad, or you even be "targeted" or watched and now even with medical things, at times I find myself almost "neutering" my own feelings and my own illness issues.

My issues lately have been since I've had the cervical neck surgery that was so much more in depth than we thought, I've not been able to really sit and type much. Thus I've kind of had to be a bit less here online... but then you hear and see things on the television, news, online, and you have to at times wonder if you really want to "give out" as much about yourself, as you may have 10 years ago....

Something to definitely ponder. .... YOUR THOUGHTS.. would be welcome....



Tuesday, May 16, 2017

World Autoimmune/Autoinflammatory Arthritis Day

 In one week we'll be putting the AUTO in AUTOimmune & AUTOinflammatory Arthritis by hosting a virtual awareness race via Facebook & Twitter - and YOU need to help "drive" the awareness!

Learn more at www.WAAD17.org - and invite others (SHARE!)
— with American Autoimmune Related Diseases Association (AARDA), CreakyJoints and International Foundation for Autoimmune & Autoinflammatory Arthritis.
Take a look at the website, and Facebook page! YOU can find out more at both of those.

It's time to take Autoimmune Arthritic Illnesses, and "run" them off the track! 

 


 

Tuesday, May 2, 2017

Update on my Cervical Neck Surgery..... news is frightening honestly!

My visit went "okay" on my follow up 11 days after the neck surgery. What I found out though this HAD TO WORK AND IT NEEDS TO HEAL AND STAY WORKING! I don't have much bone to even work with anymore... he took out all of the hardware, and one of my other surgery levels had completely fused and was awesome. It was "between" the two the were new and then one that never quite healed right from the 2012 surgery. It is amazing to look at the X-rays and wonder how the heck they get all of that in there, and make it work. I am in the HARD COLLAR THOUGH another 5 WEEKS! 

Then i go to a soft collar, but he told me frankly we needed to take every precaution we could to make sure this does get the job done... my lumbar spine he said, and he was upset I did not tell him months back about how bad it had gotten, but my neck after seeing NO SPACE LITERALLY between two of the discs, and how he managed to put almost 2 1/2 inches of space and then remove a huge bone spur that was also in that area... but lumbar surgery could be done in about 9 weeks if it stays bad or gets worse. He said I could have lower surgery even a bit earlier as long as my neck progresses .... anyway, I then I think put myself in a "tension" after hearing him and then I think I am having muscle spasms on the left side where it is so bad, plus just stressed myself out so 

I didn't sleep again as well as I should have and was up "early" but at least not at 2AM and was actually asleep until about 3:30AM before I finally got up. I don't want to sit and type much. Right now although the pain and burning etc has really gone down so much so quickly, I don't want to chance i and I don't want to run into messing something up.... so that is my report... once I get the operative report, I will have to post some of that so you can hear just how much he had to do in orde to have enough to work with this time...

Saturday, April 8, 2017

"MUCH TO YOUNG TO FEEL THIS DAMNED OLD"! Ra, Lupus, Neck Surgery, Osteoporosis, joints falling apart, knee and elbow issues, and it just goes on and on....


I LOVE my home and I LOVE working on my home and in my yard, BUT it is to the point that the "working" should be more of "enjoyment" rather than feeling like it is making my Lupus and RA WORSE! I've also now "tweaked my right knee and yesterday "bumped" my left elbow that already has screws in it from about a surgery done in 1998 and it was already needing to be worked on again, but I must face the Neck surgery... so I CANCELLED my reservation for TOMORROW AT THE CASINO (as I thought about I HAVE NOT HAD ONE NIGHT AWAY AT ALL OTHER THAN BEING IN THE HOSPITAL IN OVER 16 MONTHS, AND I HAVE NOT HAD A "VACATION" SINCE MY Daughter's wedding and then a trip to Vegas in 2005!) THAT IS WAY TOO LONG TO GO AND NOT HAVE A DAMNED BREAK! I feel like all I do, is work inside the house, work outside the house, buy STUFF TO WORK ON THE HOUSE WHICH IS GETTING TOO EXPENSIVE! 
 
Then after BUYING ALL OF THIS STUFF, EVEN THOUGH ALL Rechargeable battery operated, even the lawn mower, I FEAR EVEN WALKING ACROSS MY HOUSE! IF I go outside, it seems i run the risk of fire ants, wasps, yellow jackets, bees, or having a damned accident, although I am SO CAREFUL. In fact even the BREAK OF MY HIP was inside, me stepping over a small gate i had stepped over a 100 times! 
 
So IT IS NOT LIKE I AM ON A 8 FOOT LADDER PAINTING, but stepped too HARD OFF A SMALL LADDER AND TWEAKED THE KNEE A COUPLE OF WEEKS AGO, ON THE RIGHT SIDE ALSO, THEN YESTERDAY I HAD THE OLD WINDOW PROPPED UP IN MY OFFICE, PUTTING THE SCREEN INTO THE "STORM WINDOW" ON THE OUTSIDE OF IT, and that window (that I even propped UP MORE than the others because it is more loose and can fall, and dammit it came down on my left ARM, RIGHT AT THAT ELBOW AND THANKFULLY JUST SCRAPED DOWN, BUT STILL LEFT A "GOOSE EGG" KNOT that scared the hell out of me... THEY WENT UP ON MY HOUSE INSURANCE OVER 100.00 A YEAR! MY TAXES ARE GOING UP, The new A/C, the new saw, the stuff for ants, for wasps, for other bugs, ALL OF IT COSTS A FORTUNE, and I CANNOT PAY TO HAVE STUFF DONE! NOT THESE "smaller" daily things like hanging a new mini blind, or cutting a few small tree branches, or putting out fire ant killer... why I would be broke in a year or less, and hell I am going broke just BUYING THE CRAP I NEED! I bet I have spent over 2,500.00 AND I AM SURE MORE, ON JUST STUFF TO WORK ON THE HOUSE WITH INSIDE AND OUT, ..... it is just insane... 
 
If I MOVE INTO AN APARTMENT OR DUPLEX, THEN I DON'T HAVE TO WORRY ABOUT BUGS, ANTS, IF AN APPLIANCE OR WATER HEATER GOES OUT, A ROOF, THE LAWN, IF SOMETHING BREAKS THEY FIX IT! I do NOT have to have HIGH HOUSE INSURANCE OR PAY TAXES ANYMORE! I know RENT IS EXPENSIVE... BUT I CAN DO WITH A 1 BEDROOM small place and I COULD SELL THOUSANDS OF DOLLARS OF ALL OF THIS NEW STUFF OUT, AND NOT NEED IT ANYMORE.... I made my reservation for EASTER SUNDAY! I know that may sound BAD, BUT my kids will have plans, I know my daughter and them can't come up then from Corpus, and I may as well GO AND HAVE A RELAXING TIME FOR SUNDAY AND MONDAY BEFORE NECK SURGERY! I am just worn completely out from all of it, and I AM MUCH TO YOUNG TO FEEL THIS DAMNED OLD! AS THE SONG GOES...,

Tuesday, March 21, 2017

Rheumatologist appt today, hoping for Xeljanz, severe finger, thumbs, wrists pain, stiffness, swelling & needing relief - Also thinking that I have "shingles" and not something biting me

Today is the day! To the Rheumy I go. So far, my hand fingers, thumbs and wrists are hurting and swollen I hate when I go to a doctor and by the time I get there whatever is going on seems to be "better" that particular day! Since this has been going on now for a good while, they have been really bad on my right hand where i do well to type here, cannot open jars, cannot carry much of any weight with that hand and arm to the point it is really affecting my left arm and hand. My left elbow is now a mess I think. I know some of it is coming from my neck, but I knew the elbow has been bad for a long while. I've spoken about it before, after surgery on it in about 1998, now it is getting bad again, and I know it is due to me having to use my left hand, arm, wrist and shoulder much more than my right one. I could barely get my tea holder open this morning, because it hurts so badly to pull the lid off of it. I dread the drive up there though. His office means going on I-45 but then I have to make this horrid couple of miles that is a nightmare in order to get over to I-35 where the offices are for the SW Med Center. 

So, I always hate the traffic. My appt is early afternoon so that will help some, plus I will leave in plenty of time just in case there is issues with traffic, but still just the regular traffic that particular way is terrible any time of the day. Plus the drive home is almost as bad... same deal you HAVE TO be in the CORRECT LANE in order to make the cross back over to I-45 and that is about a 6 lane or more highway there, and goes all directions. Plus they have been doing a great deal of construction in that area so that even makes it worse. Then you have the idiots that don't get in their right lane until they have to cross over 4 lanes of traffic at the last minute and risk a chance of hitting someone with their stupidity. 

I know most of them are from that area and they think the "know" just how to move in the lanes, but usually even if they are driving like maniacs, it gets them no quicker there, than me, who is driving in the correct lanes with the flow of traffic. Speeding, is something I just don't do, BUT as many know in huge cities, with that much traffic sometimes driving the "speed limit" will get you ran over also. So, I've learned over the years in those places to try and drive with the flow of regular traffic, thus usually it makes it a bit easier to be in the lane you need to be and give yourself time to be there. I am a good driver as far as I am concerned, but it the other fools on the road that bother me... trying to look out for all of them, in so many lanes at once, and then trying to not hit someone when they cram on their brakes, or avoiding someone behind you hitting you because they are not watching to see brake lights coming on or they tail gate, which pisses me off to no end. Those that tailgate are just accidents waiting to happen. Anyway, I am hoping we try Zeljanx. 

That is my hope BUT since I am facing cervical neck surgery in probably a month, my fear is that they will not want to put me on the medication, until after the surgery, and a few weeks after it until I am kind of out of the woods for any type of infection. BUT, hopefully that won't happen, and I can get approved for it and get started quickly. I know they will have to send paperwork into my insurance company to get that medication approved. After all of the crap going on now with the government, my fear is many of us will wind up having to either NOT take our medications, because they will not cover them, or our co-pays will be higher, or we will have to try and get the drug companies to help with the costs, which many of them will do now just to be able to get the meds out there and hope the insurance will finally wise up, but I think it is worse when you are on any type of Medicare, especially a Medicare Advantage Plan. So, I am going over things and checking email etc. I will have to get out of here a couple of hours before I need to be there. by the time I get to the Valet parking, and then get in to check in, fill out paperwork since it has been so long since I was there and then all of the things to tell them. They are not aware of my hip fractures and my ankle/foot issues, or the complication with the hematoma on my hip and so forth. So, hopefully this visit WILL help and be one that is not worth going for as they do sometimes. 


I feel that maybe is my what I thought was some type of "bite" or sting, could be shingles. With them being on one side of my body, on my upper arm and on my torso, it sounds like and kind of appears to be those... I take the medication daily for my cold sores, which is the same family of virus that the shingles come from, so my thought it that my case might be "less" due to the medication... 

Thursday, March 16, 2017

Thursday’s Addition of my Newspaper "Life Chronic Pain & Autoimmune Systemic Diseases & Dementia



For those of you who may not be aware of my daily Newspaper I have and put out everyday here is a link to today's latest addition for today's paper! LOTS of great information here on Chronic Pain, Lupus, RA, other Autoimmune Illnesses, Dementia, and more. There are usually pics, along with articles, and video's daily. 


Please stop by and see the daily additions. I usually update it at least once daily in the mornings, and sometimes twice daily if I feel there is more I should let you know. There is also a link that has that information on the side of my blog pages if you can't find it one day. I've been getting quote a good deal of positive feedback, even from Twitter, IN, FB on several of my pages, and more.... 

Come by, visit and give me your feedback!