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!!!

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!

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....

The 50-State Network Health Advocacy, Creaky Joints, The Global Healthy Living Foundation and "Patient Counsil" that are at the heart of these Arthritic Illnesses & "Chronic Pain" Foundations

I've been a "member" and follower of "Creaky Joints", and "Arthritis Power" plus following Seth Ginsberg for a very long time. He began his venture of these websites, due to his own struggle with pain and arthritic illness that began very early in his life.

I've always admired his tenacity, and the way he gives each of us, the patients a "VOICE' about our own Pain problems and Arthritis health problems, and there are many. I can definitely attest to the MANY types of Chronic Pain, that myself and MANY of us have to try and deal with daily. Which includes trying to get to the proper doctors, get the medications we need, get insurance to pay for the help we need, all the while also fighting "Congress" on the Federal and State Levels, so we can continue to get the "Best Healthcare" for "Chronic Pain" possible. I believe that many people that have not experienced health conditions such as Rheumatoid Arthritis, Osteoarthritis, Juvenile RA, along with several other "arthritic" conditions, don't get the "horrid" pain all too often patients live with. Of course, pain, is not the only factor that effects every part of ones life. We often live with stiffness, joint swelling, mobility issues, medications that cause some "harmful" effects, such as corticosteroids. Like my PCP says to me, Prednisone is a "necessary evil" for me. Yet, I already was predestined to have osteoporosis, thus with my body frame being small, the medications, along with RA and Lupus, have me at the "severe" range of osteoporosis. This simply means, THAT is more than likely why my hip fractured after the fall I took in December last year. If I had not had osteoporosis, I may have came out with just a very bruised thigh and hip. Yet, it was fractured in two places. Also, those of us with this dreadful disease also run the risk of "not enough bone" to have surgery on. I have ran into that one with my neck. After this 2nd surgery, now I face "not enough vertebral bone" to even "repair" anymore. So, this 3 level surgery I had in April HAS TO WORK, as my Orthopedic Surgeon put it. If not, then I run the high chance of having a "totally fused" neck, where I could not look UP or down... or move my head very much side to side.

I had a very informative "phone conversation" with several of the people from the  50 State Network and the Patient Counsel all a spin off by Seth, as well as The Global Healthy Living Foundation this afternoon. I feel very privileged to be a part of these foundations. I hope to help further educate patients, doctors, find ways to get bills passed at the State and Federal Levels of government, along with other ways in which they help patients, there families, and close friends and help to pave the way for more guidelines on several extremely important topics that effect many of us, from "biosimilars", to "all ways" that patients are effected by health insurance or lack of, medications, finding doctors that can help, and ways to cope with the red tape involved when you are chronically ill,

Most that know me, know my own personal journey through the pitfalls, the times of doubt and sorrow, and the sometimes triumphs over these diseases. All too often patients like myself, have "several" pain problems, not just one. Which makes our life a living hell at times. We fight for treatments, medications, insurance that pays, along with every step we take. When you are chronically ill and/or in pain, it's difficult enough just to get out the bed each morning, much less take the stresses of finding proper care, proper medications, trying to get insurance to pay, and now fighting the government so we continue to be able to get the care we need on ALL LEVELS.

The 50-State Network Patient Network, along with Creaky Joints, and The Global Healthy Living Foundation are helping to get our governmental bodies "on board".  I am also now a member of the "Patient Counsil", and will update you more as I move forward in my own venture and learning about everything. They provide a great deal of information for patients, as well as those who are playing other "active roles" in these foundations Rather that taking away what we need to survive and try to thrive through all of the days of outrageous pain, we are out there fighting for not just ourselves but ALL CHRONIC PAIN PATIENTS, LOVED ONES, FAMILY, JOBS AND MORE!

I am hoping to become more active in a role with the 50-State Network, already involved in Creaky Joints, and to learn more about the Global Healthy Living Foundation. As the days go by and I learn more, I will definitely keep you posted, on how you can contribute. In the meantime, all of the links are below, so YOU can go to the sites an find out more also.

By the way when I was reading through the documentation from "Creaky Joints" one "phrase" really stuck out to me. Of course much of it is brilliant and so helpful to patients, caretakers, families and close friends. We've all heard the phrase "Do No Harm" which is of course the main "vow" of physicians. One of the things they pointed out though was that does not "just mean" physical harm, but mental and even "financial". I felt that really "struck" a nerve with me. With the very high cost of surgeries, and the ones I've had are always over the $100,000.00 dollar range... yet, unless you really "ask" for help, either for a payment plan, or "financial aid" of some type, often you are NOT offered it. I've found out there is NO SHAME in calling a health care provider, especially with a huge "bill" from surgery etc. and asking for some type of help. Often if you "pay it all" at once, they will give you a percentage off the bill, or like myself, on this "Bone Stimulator" that I was not told runs $5,000.00 AND ONLY LASTS ABOUT 6 MONTHS, and is NOT reusable for future surgeries. So, my part was going to be over $600.00, and that is just a "drop" in the bucket of bills, from hospitals, doctors, the Ambulance, ER, Anesthesiologists, Radiology, and so forth. I called and found out that I "qualified" for complete "assistance" for the entire 600.00. Yet, if I had not "asked" they never would have "offered" for sure. Just on portion of what we deal with on so many levels, with any chronic illness. 

Also, those of you who deal with the stresses of "Arthritic" illnesses may want to check out the app "Arthritis Power". The details are at the URL listed below... and you can also get it at the "App" Store at Apple.com or on Google Play.


Please visit the sites, and see just how incredible these places are along with seeing how YOU the PATIENT can be on board also, to fight the "good fight" for all!

https://creakyjoints.org/

https://www.ghlf.org/

https://www.50statenetwork.org/

 

https://arthritispower.org

 

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?

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....

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....

World Autoimmune/Autoinflammatory Arthritis Day

World Autoimmune/Autoinflammatory Arthritis Day

@WorldAutoimmuneArthritisDay

 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! 

 

 

RA my Enbrel came in, Lupus flare, Neck surgery coming up, 100% flattened disc, bone spurs, and joints giving hell, along with being tired and feeling lousy.

I FINALLY GOT THOSE two mini blinds up in my living room. This time I didn't step "hard" off the step stool. Thank goodness. But, the wood in this house is so HARD it is extremely difficult to put a screw or nail into the wood! It was definitely made from some extremely hard type of wood for sure. Anyway, my neck and entire body knew that storm was coming. I've hurt for several days and day before and yesterday was really bad. I had to make myself get up and do something. 

So, I baked a Lemon Pound Cake, got those blinds hung up finally, walked Peanut for a bit several times, and forgot I was completely out of any fresh fruit, and didn't even have any of the fruit cups or canned fruit I keep usually just in case I run out of fresh and don't feel like running to the market. It was almost 3PM by the time it dawned on me, but I threw some different shoes on, went to HEB & picked up a cantaloupe, a couple of plums, a couple of Gala Apples, and a HUGE Mango! I "hoped:" the Mango and cantaloupe were both good. I was almost too tired to get them prepared, but I finally decided I would get that cantaloupe scooped out, and cut up that Mango and they are both awesome! Sometimes the fruit is very good and sometimes very BAD! I hate when I pay expensive prices for fresh fruit, and it tastes like "cardboard". 

Then I picked up a red bell pepper, some tomatoes, and a cucumber. I've been eating salads again almost every evening for with dinner. So, I decided to add a couple of things that I've not been eating lately. THEN I FORGOT to get a new head of lettuce of all things. But, I still have enough for another salad tonight if I want one, so I am good until tomorrow at least. But, by the time I got to the house, and started to take those two sacks in, I was so tired I could barely pick my feet up off the ground. I don't know if it is just all of the running to Dallas Monday to see the Orthopedic Surgeon, plus last week the drive to see my Rheumatologist up there, and today I see my Cardiologist... but I feel just drained of all of my energy.

 I was on the sofa although awake but watching "True Blood" (I REALLY got into that series) and drinking coffee. I had quit drinking coffee for a very long time. Then after it began getting warmer, then I decide to drink coffee again. Usually one cup in the morning. But, it seems to upset my stomach, and that was one reason why I quit a year or more ago. It just does not set well sometimes with my stomach. My ENBREL CAME IN YESTERDAY! It was here on the porch when I got home from getting those groceries. BUT, I am about "half in fear" of starting it. When I was at my Rheumatologist office, we were talking about me being on a couple of the other RA injectables. It dawned on me, that when I was on the last one the Orencia, that is when I suddenly developed the cellulitis in both of the tops of my thighs. One week the left one began to have the lump in it, and then about 10 days later the other side in almost the same position began to have a lump. Later that turned into going to a surgeon, who had to open that mess up, and finally he messed up so badly (THANK GOODNESS he retired about 6 months ago) that I had to go to the wound care up at Charleton Methodist for 8 weeks I believe. They had to clean those out and put that special stuff in them to get them to get rid of the infection and finally close up, but I was dealing with that for almost 6 months or more. The Orencia, I feel was "contaminated".... I developed those places within a few days after the injection, in the about location I had been injecting them... and I felt it is was much of a coincidence that they came up a few days after the injection, in the same location from where I was doing those injections. 

Now, I do my B-12 injections monthly, and never have had any issues with those. And I am even more cautious that the doctors offices, when I give myself injections. I clean them several times all around on my thighs with the alcohol preps, and make sure everything stays completely sterile, and always cover up that spot with a band-aid for 24 hours. As most of us know we "carry" strep and staph or many of us do on our skin. It is almost impossible in the world we live in not to have some type of things like that on the surface of our skin. So, cleaning it is essential so not to "PUSH" those germs under the skin. Anyway, this one is in an "injectable pen" which is much easier to deal with, but honestly it to me hurts more than using a needle like I do with my B-12. I use the allergy needles for that and I never feel a thing. So, I put it in the fridge, and decided I would go back over all of the instructions today, and I am taking a shower in just a bit, so after my shower then I will take the first dose. I had to do this one once a week. My neck is definitely "worse". 

I believe I said that last night or night before last. LOL,,, I cannot keep up with the days anymore... it is 100 percent collapsed now and 1 of the ones he worked on before "may" be needing a bit of work, plus this time even on X-rays I showed several bone spurs. He said he definitely knew I had to be in pain, plus I can barely turn my head side to side. So, we are looking at probably the "middle" of April depending on how quickly the insurance approves it. Which they had already approved it last year, then due to Mom and then my hip fractures, I could not have the neck surgery. I think I just kind of "pulled" the muscles/ligaments around my neck and below it. It is much better today, except when I step a certain way. But, it is mostly doing okay thank goodness. Hell, now my elbow on the left arm, that was bad and I had surgery to attach the tendons back onto the bones, is beginning to "pop". It needed surgery at least 4 or 5 years ago, and I just took a couple of steroid injections, and decided to put it off. It is not hurting, so that is a good thing, it is just popping when I bend it or straighten it. If it's not one joint it's the other... LOL....

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

http://news.autoimmunearthriticsystemiclife.com/#

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!

SHINGLES??? What NOW! Always some thing to deal with medically it feels like.

I began to put the cabinet together yesterday. Looks like the actual "corners" that are "damaged" will be on the bottom of the cabinet in the back portion I think. Anyway, I still have about 30% to finish. I was actually putting it together in my hallway, but I am thinking about taking what I have put together now, into the back bedroom. 

 

If I put much more of it together, then it will be too large and probably too heavy to move into that room. I had to take some things out of that room, and make a space large enough to work in. But, I have an "odd" thing going on. For one, although the weather is kind of dreary, cloudy, and rainy looking, it is not all that cold outside, more just a very damp coolness. 

 

But, I've been COLD now for 2 days, upset stomach off and on, and I "thought" something had bitten me, or stung me on my left arm. It began feeling like it has "fiberglass" on it, that tingling, stinging, very itchy feeling. I've not felt all that great now for several days, and I figured it is just the weather causing me to feel lousy. 

 

But, this now severe itching is driving me nuts. I found what looked like one small "blood blister, about half way up on my upper arm, up from my elbow. It almost reminded me of the severe wasp sting I had last year, but as far as I know, of course I have not been stung by any type of wasp. Plus, I don't think mosquito's are out and even if they were this is not from a mosquito, I don't think either. 

 

*By what I know about "shingles" and what I have looked up, and with my Lupus and RA, that makes me a higher risk to get them, it "might be" shingles dammit. If anything touches my skin from just below my elbow, in the bend of my elbow and then about up to this "green spot" it makes me want to scratch the heck of out it, but it burns, stings and tingles. I did not know that you can have shingles and not have an eruption of the blisters/rash that usually appear. My guess since I read that the rash actually may not appear for several days after the pain and itching has happened, it kind of looks like I may have some "rash-like" places especially in the bed of the elbow. Good gosh, what else... I also have doctors appts. Monday for my hip f/u, Tuesday to Dallas to see my Rheumatologist, and Thursday back to Dallas to have my pain pump refilled. I also have been fighting a bad headache along with my upset stomach. Anyway, I guess I will just wait and see what this looks and feels like tomorrow. I thought I would be putting that cabinet together the rest of the way today, but with my stomach so nauseated, right now I think heading for the sofa is best for while at least until my tummy feels better. Take care everyone, there are all kinds of "bugs", the Flu and other illnesses around right now... Rhia Steele "All things Autoimmune"

 

Here are a couple of websites with information on Shingles:

 

http://www.healthline.com/health-slideshow/early-symptoms-shingles 

 

http://www.mayoclinic.org/diseases-conditions/shingles/basics/symptoms/con-20019574 

 

 

 

 

Stressing Out, Trying to Cope, with surgeries,health,family,doctors, and trying to "get over" all that I cannot "fix".... Weather,Chronic Pain,RA,Doctors,Hip surgery & Life

For some reason (and I know partially some of the reasons) I am just in such an odd, feeling like I am just totally forgotten about, crappy mood that I've been trying to "shake" now for a week or more. I know the weather does not help, this HOT one moment, and in a few hours, COLD, dreary, and you need a coat on, and then that makes my entire body almost have this deep ache, especially in my joints. Even the entire leg from the hip all the way to my foot, has an ache to it... and it was not like that right after the surgeries. In fact after it was repaired, I did not have a HUGE amount of pain, but enough I had to take medication to do my PT, etc... 

But now, even again this morning, I woke up to a horrid headache, that then made me sick to my stomach, and I knew better than to drink any coffee if my stomach is nauseated... that just makes it worse. So, I made a cup of hot tea instead and that seemed to help calm my stomach and I took my nausea meds also. then of course although it was sunny yesterday, with the wind it was still really to COOL to do much outside.. So, wake up this morning to not rain yet, but now it has clouded over, and we have a pretty good have of rain or even thunderstorms later this evening, in to tomorrow and maybe rain on Tuesday also. Plus the ordeal with my Surgeons' office Friday left me pissed... I wanted to make sure I had seen him BEFORE going to my Rheumatologist, so I would have the latest X=ray and know how the hip is healing etc. Plus I have a bit of a purple spot, and have had some what I figure is "nerve pain" down that entire leg, but more than likely that is from my back. 

It is still annoying because I get home to find out they rescheduled my appt for the SAME DAY AS MY RHEUMATOLOGIST IN DALLAS!!!! Well, of course that won't work, so now I have to get them to hopefully schedule it BEFORE I go to my Rheumy. because we want to try new medication the RA is getting so much worse, especially in my thumbs, fingers and wrists. My right hand has swollen spots on it almost all the time now or especially if I do lots of things using my hands... from cutting small branches, to washing my car, even driving makes my thumbs and fingers (the 2 next to my thumb) "go to sleep" or be numb. It is annoying plus that tells me the RA is progressing, which is the last thing I need to happen. I've been trying to keep as busy as possible doing cleaning, throwing away stuff that needs to go, taking care of all of my plants, ready to put them outside as soon as I can... a couple of them HATE being inside during the winter and will look like they are going to die while inside.

 I even put my cool mist humidifier in the room and run it several hours a day. Anyway, I have PLENTY to do that can keep me busy, just going through, and as I said throwing away old things, or getting rid of stuff I know I will never use. I keep lots of things (a few certain things not like a hoarder) LOL that I feel may come in handy later. Sure enough there are many times, something comes up and I need a certain thing, then I recall, I put something away,, that may work, and I don't have to buy anything, or run out to the store, etc. But, there are also things I hang onto knowing fully well, they just need to be trashed. I even do that with coupons now. I cut out what I need and throw away the rest. I had been taking them to the girls at Wal-greens, but so many of them are gone, or they may not have small babies that need certain items that I have coupons for etc. I also pitched a couple pair of old sandals. I had been just using them around in the yard during the hot months, but I had basically "glued" them one or twice, the stone kept falling out of another pair, that we worn out, and stuff like "half-slips" OMG I cannot recall the last time I needed any type of "slip" under clothing - Women's clothes are different or they have a liner in them thus no need for a slip etc. And I had a billion samples of all kinds of shampoo, and those types of things, that I had accumulated over 5 or 6 years, and some of it, was just too old, and needed to be trashed. I also have been going through all of my "hand tools"... like for my plants, hand tools for my yard, spades, things like paint brushes, items to work on my windows with, screws, nuts, bolts, nails, sheet rock things, my screwdrivers, cordless drill, and just an entire "collection" of things such as screws, nuts, bolts, I never throw away, I can guarantee I will need one that size later, so I have been putting those in empty pill bottles, I take off the labels and save some to put those types of things in them. I have several bins, many need nose pliers, vice grips, small saws, hammers, and as I said you name it, I have kept them... so they are going to finally be organized and I went ahead and ordered the "cabinet" with doors - so many, of those types of things can be put away, organized, rather than sitting in a couple of boxes on table tops taking up space, and causing me to have to dig through things when i need something. 

BUT, EVEN WITH ALL OF THAT, I GUESS I AM SICK OF FEELING OR BRING ILL, OR NOT FEELING WELL, or "not doing some stuff" until I get another "review" about my hip and foot. I am just frustrated, with myself, with all of the catching up, with stuff I "am not sure" whether I should do or not... which is really stupid. My surgeon told me last time I was there, I could basically "DO" What I FELT I COULD DO... LOL! not things such as sky-diving, or up on a ten-foot ladder painting right now, or trying to pick up things that are too heavy, and that is more for my neck and back, than it is my hip. I do know I've got some pain from the hip that runs down the inside of my thigh, and they say that can be very present, and is likely after a hip fracture and repair.

 I am also using muscles that were not used for 6 weeks or more... while I was in the hospital and them Rehab Inpatient PT. But, they really were giving me a workout in PT honestly. So, I am avidly doing my ankle and foot exercises, and I make sure I do them with both legs, so both feel strong. I had sprained the left ankle a couple of times also, and due to the flat feet, that tendency to "re--sprain" or for those muscles and tendons to be loose is probably there in that foot too. Right now, I am just having to MAKE MYSELF SIT HERE AND TYPE!!!! It makes my neck and shoulders hurt if I type for very long, a well as my thumbs,fingers and wrists. I guess in "wrapping" up this ongoing FB post, I will close with I know MANY of us are going through the same thing. But, I think I expected "more out of myself" than where I am.

I also felt I would be more "settled" with all of the medical things, so I could get my neck fixed... I know I probably face lower back surgery, especially since we found out I had that "missing lamina" that they feel I was that way, without it there in that area, and I know my discs there are not good either... and even though it's been 8 months or so since Mom passed away, I am still dealing with her, paperwork and stuff, but also that I still in ways grieve for her, and find myself almost "LOST" with her no longer around. I catch myself thinking "I should call Mom and tell her, this, that or the other"... then it dawns on me, that she is not "reachable" from here anymore... so LOTS of "stuff" even more than I've poured out here is causing me to really have a great deal of "stress" that some is really useless... if I can't "fix" it then I should not stress over it....