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...

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! 

 

 

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...

"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...,

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!

Dementia linked to Autoimmune Illnesses? This is both interesting and frightening....

Dementia Risk Up with Autoimmunity

http://www.medpagetoday.com/rheumatology/generalrheumatology/63498?xid=nl_mpt_special_reports_2017-03-09%20&uun=g773630d0r5952786u


Here are a few excerpts from the article on Medpage Today...

Among the 25 autoimmune diseases, 18 had significant positive associations for dementia (P for all <0 .001="" p="">

• Addison's disease, RR 1.48 (95% CI 1.34-1.64)
• Multiple sclerosis, RR 1.97 (95% CI 1.88-2.07)
• Psoriasis, RR 1.29 (95% CI 1.25-1.34)
• Systemic lupus erythematosus, RR 1.46 (95% CI 1.32-1.61)
• Thyrotoxicosis, RR 1.31 (95% CI 1.27-1.34)

Of the 81,502 patients with autoimmune disease who also developed dementia, the subtype of dementia was identified in 42,568 -- 20,032 with Alzheimer's and 22,536 with vascular dementia.


Risks for vascular dementia but not Alzheimer's disease were increased for idiopathic thrombocytopenia purpura, pemphigus, scleroderma, Sjogren's syndrome, systemic lupus erythematosus, and most notably, for polyarteritis nodosa, with a rate ratio of 2.12 (95% CI 1.42-3.05, P<0 .001="" p="">
I have a "genetic" factor for autoimmune illnesses on my Mom's side... and also Dementia and Alzheimer's on my maternal side... Cause to really be upsetting and hope they do much more research into this....

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 

 

 

 

 

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

For All of you that may not know that I also have a Daily Newspaper that contain all types of articles about Chronic Pain, Dementia, RA, other Autoimmune Diseases, Lupus, and everything that pertains to these types of Systemic Illnesses, Chronic Illnesses, Dementia and Chronic Pain Issues.

From articles about medications, and the "trauma" we are in as far as getting our pain and Opioid prescriptions, our doctors, the government involvement in medications, Chronic Pain people and how more and more people are becoming "victims" of these diseases, Sjogren's is another one.

There are articles about Cannabis and how it is helping some Chronic Pain patients, and other alternative types of treatments, from Acupuncture, Yoga, other relaxation treatments, and the latest on research of new and upcoming medications and other things to help ALL of the horrible illnesses and diseases, plus I also put my blog posts there usually. But, there are video's and articles from anywhere like the Arthritis Foundation, to Lupus, and the Alzheimer's and Dementia Non-Profits.

Please stop by daily and check it out. I would really love to have you come by. I update at least once daily, sometimes more than that, so it is always current.


http://news.autoimmunearthriticsystemiclife.com/#

The name of the Newspaper is:

Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®

With Will, Hope, Faith, many prayers from many people, I am able to do some things I thought I would never do again after the hip fractures.

I couldn't resist taking these photo's today. First of all, I actually put MAKE-UP ON twice this week! LOL!! Then today I went over to Waxahachie to Lowe's and I found the cabinet I was looking for. But. I just had my car, so I knew I could not fit it in... I'll either order it and have it delivered, or Jason may help me sometimes next week. I really need to research some of the wallboard etc to put up in the back bedroom and finish out the laundry room....

 Anyway, I actually went over there and decided since I am "very stable" especially the hip now, I would wear my new "ankle boots". They have a small heel on them but i felt I could handle walking in them, so on they went. Also, a couple of the nurses and my Orthopedic surgeon, and the anesthesiologist even all were taken back and kind of made fun of my belly button ring. I had forgotten to take it out before they took me to surgery, so I was already on the operating table and I took it off and they taped it to my bed. ;) So, I made a photo of my belly button ring, just to show you can be (OH LORD) 57 yrs old and still 'court" fashion. 

I got back to town and decided to stop at HEB's and pick up a few items. I had a young woman stop me and tell me how great I looked in my outfit... :) That truly made my day!!! So, I share with you what I was so proud of. When i 1st had the hip fractures, I was so bummed, I felt I may never be able to walk without a cane, or at least for a long while, plus I felt I may never be able to wear my "sensible" heeled boots.... and here it is on Feb. 13th 8 weeks, I am able to do what I thought may never happen :)

Finding some kind of "Quiet" in all of the Chaotic Realms of my Own Daily Life, what I want, what I need to do, and why I am NOT doing some of the things I think I "want" to do... as I said "chaotic"

If I sound "off" today, I feel "off".... I've been having so many nightmares, or just plain terrible dreams, I even began waking myself up and writing them down... and my sleep is all off schedule... I get up way earlier than I had been, and by the time 9PM comes around, I am ready to lay down. I try to watch a movie, and sometimes I do, other times I wake up and the movie is over, and the TV is still on... and the weather is really messing with me... although it is warm here, our humidity levels are so high, it appears as if it has rained, and I even Peanut acting a bit "off" ... we did have a full moon, but this has been going on now with me for several weeks. I "think" I am just sick of being in the house so much, and although I have a billion things I can do, for the most part, I just cannot get motivated enough to do them. I've thought it was my diet, so I went back to eating breakfast earlier, like I did while in the hospital...

 so I try to eat by about 8:30AM or so, but then by 2PM, which is too late to eat "lunch" because I eat dinner by about 5:45 for the most part, so I even made some of my own homemade granola... I have to get more stuff to go into it, but it turned out good, and this way I can keep out the nuts and stuff that my dentures just cannot take... I bought some "trail mix" and they have whole almonds in it, and even when I chopped them up more, I still cannot chew or bite on an almond, they are just too hard, and oddly enough, I like the "flavor" of almonds, but I am not crazy about the nuts themselves... I love walnuts, and they are a bit less hard, but I realized while I was looking for granola recipes, you can even put like Cheerios cereal in it, and other things I had not thought about... I used "brown sugar Splenda" in it and a little bit of honey... then put my favorite spices, allspice, cinnamon, cardamon, ginger, and nutmeg... 

and I had a few dried dates, and I took the dried cranberries out of the trail mix, and they had some dried cherries in it... plus I put coconut in it before I put it in the oven... I want to get it a bit "chunkier" though... so probably more honey or brown sugar, so it will "stick together" a bit more... then I need to grab several of my favorite dried fruits to go in it, and those now are easy to find... anyway, I am just having a tough time trying to figure out where to "stick myself"... I came down with a sore throat the last couple of days, and I know everywhere in Ennis I go people are coughing and sneezing, and hoarse, and the flu, and some other viral stuff is going around, plus lots of people are suffering from pneumonia, which I HOPE that new vaccine I took early in the fall helps to keep me away from the pneumonia.. I had it like 2 or 3 years in a row, twice in both lungs, so I don't want any of that if I can stay the heck well. Besides if I come down with something like that it delays my possible new RA medication, and/or my neck surgery... and then this morning, for some odd reason, I was getting up off the sofa, and "hit" the nerve I guess going down my left leg...

 I NEVER usually have issues with that side, but it burned and stung like I was on fire... so I am not sure, if I happened to have "rolled" on it getting up or if my lower back is acting up, but this time on my left side... when I've had kidney stones, my left side usually hurts worse than the right. So, I first thought oh crap, not a kidney stone... but it is more I think all weather related... my hip and right leg have hurt now for about 3 days or so... I even have been getting Peanut on his leash, and the days it is nice outside, we walk 4 or 5 times during the day.... he loves it ... and he got upset with me this morning. I had to go around to the back and get one of the smaller tree limbs that I need to get into the trash, plus I had a whole trash can full of limbs and tomorrow is trash day. I always try and bring the cans up to the side of my house, especially if we have bad weather, so I don't have to go around to the back if it is rainy or cold... so he was upset. I could not hold his leash, and try and bring the limb and the can up to the front... but I had him out for a little while to pick up the newspapers, and it is still damp outside... I figure it will either "cure me" or "kill me: as the saying goes, to get out and walk around for a bit...

 I've got fire ants coming out again, so it is time to get the fire any granules out, but also time to spread the granules out I buy for spring and summer. I have to do it early as of now, since we have basically not "had any real winter weather yet" so the bugs, ants, and every other kind of insect, fleas, will be in the yard if I don't get them under control BEFORE they start.. Anyway, Lots of things I could do, and I need a cabinet, preferably with doors on it. I want to take all of my tools and such I have on two tables in my back bedroom, and get them organized into the cabinet, and off those tables... The room is a damned mess... and although it is my own "controlled chaos" (I KNOW where everything is) still it looks horrible, and I've got to go through some boxes of stuff and throw away some things... but I have so many "hand tools" like pliers, screwdrivers, my cordless drills, and nails and the list of "things" I keep and need the small stuff, just needs to be organized, and put away neatly so I can get that room painted, and get the window repaired that is still broken from hail over 2 YEARS ago,...

 I fear anytime one of these bad winds will come, and it will knock out my "duct taped" window, and I will be up the creek - and mad because I have not fixed it yet... so I have MANY PROJECTS, like my writing, around the house, my advocacy stuff, and my lists go on and on, but my "motivation" is lacking right now.... I just cannot stand to "feel this way"... like I am kind of "lost" in my own sea of "stuff" and can't find which way to get my bearings and "sail" the path that I 1st need to, then go from there... I SWORE TO MYSELF after I got home from the hip fractures, I WOULD WRITE THIS NEXT BOOK... yet I continue to "not be able" to "begin" ... I almost feel like starting at the "back of the book" and work forward, rather than beginning and then coming to an end... the "latest" things to go in there are very fresh in my mind, thus the other stuff is already written down, but i must wade through all of it, and get it in some type of organized chaos, so it will half-assed make sense to whomever reads it...

 I have my drums and keyboard, BUT the right leg, will be the one along with the right foot for the bass... and the type of exercise I would get from "banging" on the drums maybe actually good for my hip and foot... it may help to strengthen those muscles both in my upper leg and in the foot also... My crap with the writing also has to do with my shoulder, and neck... and actually my lower back also, and might as well admit it my hands and wrists... When I sit here for very long, typing etc. my shoulders, neck, wrists, fingers and lower back begin to just burn... from the impinged nerves... and now the RA has gotten to the place my thumbs, wrists, and portions between my fingers are swollen, and stiff and it hurts to type for very long... I THINK IT IS TIME FOR ME TO GET THE HECK OUT OF THE HOUSE OVERNIGHT, THEN GET MY NEW PUPPY... AND try to take all of the chaotic crap, I "feel" I need to do, and sit down to re-organize my priorities again... I've drifted again between those things I "want" to do, and those things I feel I NEED to do... and what lies in between is a bunch of stuff, that keeps me in knots half the time....

Talking about our own Advocacy work, activism, the GOOD you TRULY DO, & What makes "us tick" - all of us differ one to the other... and Chronic Illnesses and pain can create and reek havoc on us, as well as age....

I have a "surprise" for everyone, but I wanted to wait until our newspaper publishes it here locally, then I will post it on Facebook, in my personal newspaper and on my blog. I have a "Press Release" from a project, that is really a vital program for research in many different realms of chronic illnesses and/or pain. I've participated two times so far, after they "found" me. 

The 1st time, I guess we did not do a news release, but they have this time. I was so thrilled about it, because I always have to sign a NDA (non-disclosure affidavit) each year they ask me to do my part. I want to share it, not just because if it being "me" but MORE to show ALL OF YOU, HOW YOUR INPUT, YOUR ADVOCACY, WHETHER ONLINE, emails, a blog, Facebook, Twitter, or however you may help out when it comes to activism DOES MAKE A DIFFERENCE! I've done advocacy and activist items now for about 5 years, for different organizations and in different realms. Some of them, really in depth, like getting to go to Congress in Washington DC with the Arthritis Foundation, or posting blog articles, or my Facebook things that I read, post, and try to help provide viable and possible solutions for so many of us, that truly need to be helped, whether through knowledge (which believe me KNOWLEDGE IS POWER, ESPECIALLY WHEN IT COMES TO YOUR OWN HEALTH, ILLNESSES, PHYSICIANS, SURGERIES, and all types of medical needs we step into during life.) I found out that although "some doctors do not like "educated" patients' MANY OF THEM are extremely happy to see patients taking an initiative to reach out, look for answers, make lists, ask questions, and not sit back and just rely on what our physicians tell us. 

LIFE and PATIENTS are too many and too busy, and our medical people NEED us to know all we can... so it saves lives, even our own. If you KNOW your medications, what you take, what you are allergic to, or have an idea about all of your medical issues, your surgeries and symptoms that are due to either a chronic medical illness such as RA or Lupus. Or if you are diabetic, you KNOW your own body, what you CAN eat, how to keep your blood sugar evened out, or other medications, know the side effects, understand when you NEED to call your doctor, OR when that side effect may not HURT you or even after a few days go away, rather than trying to call a doctor's office, and either stop the medication or go on taking it when something may not be right about it. I can almost go in when one of my joints, or my spine, or my muscles, or tendons (since MUSCLES CAN BE TIGHTENED BY EXERCISE) and TENDONS HAVE TO BE SURGICALLY REPAIRED OFTEN TIMES BECAUSE THEY DO NOT GET TIGHT AGAIN, LIKE A MUSCLE MIGHT...

That is why when you have a "torn rotator cuff" in a shoulder, you "may" strengthen the muscles, but if those "tendons" that make up the rotator cuff are too lax, or torn completely away from the bone itself, surgery may be the only option to get back mobility, strength, get rid of pain or much of it, and then strengthen the muscles after the tendons are repaired. You would be shocked and I know even ...

I recently began to totally "understand" the true difference between tendons and muscles. I "asked" the question, and my foot specialist explained it to me... like a rubber band may "stretch" like a muscle... but if it is attached to a board, and you actually tear it away from that board, no amount of exercise will give you back the loss from a tear. I now also realize WHY when someone TEARS TENDONS in their foot, or leg, it takes MONTHS AND MONTHS EVEN WITH SURGERY, to get that tendon "healed". It has to "attach" back to that bone. So, like my shoulders, or my left elbow the "severe tennis elbow" I had was "torn" away from the bone. My orthopedic surgeon attached the tendons back to my bones, with screws, nuts etc... BUT it took a long time for that tendon to actually "grow itself" back to the elbow, and often times, they don't attach back themselves, that is why, so often you never can do some of what you did with that shoulder, elbow, ankle, and so forth as you could at one time.

Before I broke the hip, I had just about made up my mind to try and snow ski one more time in my life. That used to be my "birthday present" the week of my birthday for many years.... but after the replaced knees, and the shoulder replacement, I felt maybe I should not chance "wrecking" one of them again. But, I had decided I would give it a try once more... and thought about making a trip to Santa Fe NM, I've skied there as well as Wolf Creek Pass that I LOVED! 

But Santa Fe has lots of new courses, and much more to offer than they once did, and it is about 7 hours closer than Pagosa Springs, CO where you stay to ski Wolf Creek. But, once the hip was fractured, I then knew there would be no way I would try to ski... not really because of the break of the hip BUT a fear now since my bones are so severely taken away with osteoporosis, my fear would be to "break" more bones, or another hip, or injure my back worse, thus my days of skiing are over with. I have great memories... and in fact yesterday when I was going through looking for the photo's with the fish, deer etc... I started to scan a pic of me, when the "big hair" craze was in... Gosh I wished I still looked that young.... ;) Alas time has become somewhat of an enemy when it comes to skin, aging, and how our lines, wrinkles and so forth seem to develop out of nowhere.....

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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



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

Saturday is "D" Day for me (Discharge Day) from Rehab - Excited,Thrilled, Terrified, how to "move back" into real life yet knowing the Osteoporosis could cause further issues

Finally I knew that day was coming soon - the "D-Day" of my own life, discharging and going home from Rehab...

I've been asking "how much longer" now for months it seems; although it has been "weeks" and not months... Yet, after being told yesterday, I would be leaving Saturday, I felt a "good panic" and a "bad panic" in my head and gut.

I am thrilled to GET HOME! To my life, my eating, sleeping, and living habits, BUT I am still going to be limited as far as "what I can and can't do" - and that scares me. I am so used to doing my own thing, going to the market when I want, cleaning my house the way I want, messing around in the yard, caring for my plants, doing laundry, and all of the usual stuff, from vacuuming, cooking and cleaning, yet just now I figured out with this walker and going home, that even carrying a cup of coffee is not going to be the easiest thing in the world... trying to push that walker with one hand, and carrying the coffee was kind of "difficult". But, I've got to learn to "make my own ways" around, and hopefully I will be on a cane soon, where one hand will be free to carry some things...

BUT, on the other hand I am totally terrified to go home... since I left lots has changed just within a month tomorrow actually. I fell on the 13th of December and had surgery that night. I got to rehab about the 18th or so, and in the chaos of it all, I lost my precious pup Bub's who I feel grieved himself to death missing me. He was so upset for me to leave for a day, or a few hours, I think he just quit eating, drinking and laid on his favorite spot, and wasted away, waiting for me to come home. He passed away, and he had lost so much weight, I just could not believe it, when he died in my arms a couple of weeks ago. Peanut, is so much younger, so he has gotten used to Jason being there, and he so far seems to be doing okay.

I am going to be getting another puppy soon. But, first I've got to get me at the house and settled in. I need rails built on my front steps, and I need I feel a new set of steps built on the back. The concrete ones back there are so steep, even with rails, I feel they maybe too steep for me to try and bring groceries in, and so forth.

I never thought I would be one to be worried about being alone, but that is not because I fear someone getting in etc...I fear having an accident, and hurting myself again. This hip fracture was a total accident, but I am going to have to try and learn to slow down, not try and take on so many projects at once, and know that "tomorrow" on many thing is another day. After all, I face neck surgery soon, and possibly lower back surgery this year. I have that new car sitting there, and I am so used to doing so much on my own, waiting to have "help" putting on the plates, putting in the sticker and so forth, I am not one to put off something waiting on someone else to do it for me... So, my fear is my own restlessness. I also need to rearrange my kitchen where I can reach things that now are in the top shelves, and I must stand on my little 3 step ladder to reach. But, my kitchen cabinets are not all that great, and trying to arrange them will be difficult. Now I wonder if I should have picked Mom's house, maybe it would be easier to get around in... yet it is what it is and I've got to cope - I also know I am going to owe $$ on this damned fall and hip fracture, plus I'll have to cough up funds on the neck surgery, and lower back surgery also... so those in themselves are enough to worry me. My credit issues I spent 10 years or more getting straightened out from my 2nd marriage and all of the high bills he ran up maxing out credit cards, the last thing I need is to screw it all back up with doctor and hospital bills.

So, YES I am thrilled, and YES I am TERRIFIED to go home at the same time.....

Chronic Pain Patients and the "absurd" information on abuse and New Medication for pain with Abuse Deterrent in it

https://www.madinamerica.com/…/stop-the-war-on-chronic-pai…/



 I found this article interesting and more to the point when "chronic pain patients" are attacked for something they are NOT causing. I great example (I was not attacked but) since I had to have surgery yesterday, of course I had to be "NPO" thus I could have have ANYTHING to eat, drink and even my meds were taken away after midnight... all of which is necessary, BUT my surgery was NOT until 1PM the next day!
So, like MOST told me and I know myself, I could have been given my critical meds, such as my muscle relaxer, pain med, & my anxiety med...but I was made to wait UNTIL AFTER 3:30PM or longer, rather than just stopping it at 8 hours...


IF the surgery would have been early morning such as 6 or 7 AM etc then it would make sense.. anyway, same with this... "true and legitimate patients are being "punished" or horrified, because with all of the "crap" out there in the news we fear being without our meds.... yesterday, I was in horrid pain by the time I got to the hospital after waiting so long, then checking in, getting prepped for surgery, & then going under (which I was thrilled to go under anesthesia, knowing then I would be free of pain, plus I would FINALLY get some pain meds for relief.... 
  

It is a nightmare if you live in terrible pain daily, or almost daily, and then are terrified all of a sudden your meds could be jerked away... so those that don't understand, should be "educated" on just how chronic pain invades and takes over your life... and quality of life goes null and void, for the patient, family and way of life...

And from the Pain News Network....

https://www.painnewsnetwork.org/stories/2017/1/9/fda-approves-new-long-acting-painkiller

FDA Approves New Long Acting Painkiller  

 

Just came out a couple of days ago!

Hoping that 2017 "pushes" out all the grief, sadness and illness and brings peace, wellness and secuirty to myself and everyone!

I have been "quiet" - but I had more terrible stuff going on... Bubba my Chiweenie, got suddenly ill, and passed away in my arms night before last. All of the loss surrounding myself and my family is really taking its toll on all of us. I've had all kinds of complications, from the anemia, to a huge hematoma just where the surgery on my hip was done. I look "deformed" because that hip looks like it is 4 times bigger than it should look, then my liver enzymes and lab work was high and all messed up. 

Then I still have this place on my right foot that I swear has to be fractured. I cannot stand to put any weight on it, which hinders my therapy for my hip. I just want things to get back to some kind of normal so I can go home. Even though everyone is extremely nice here, I don't want to stay one moment more than I have to. I had hoped I would be home by January 1st, but looks like that is not happening. My doctor wants to leave the staples in another 5 days or so, due to the large hematoma where the surgery and the staples are... 

PT is going fine, other than me having such heck with that right foot. They re-x-rayed it last night, and the woman doing the X-rays showed them to me, and said she was not the doctor but it didn't appear to have a fracture, and she mentioned a bone spur... but I still insist that due to the pain, the "redness" where it hurts and the pain and swelling from it kind of around and down my foot, something is wrong, and they have not found it. Anyway, wishing everyone a Safe and Happy New Year's eve and Day... I hope is 2017 brings more happiness, peace, and security, and wellness for myself and everyone.... Rhia

How to Move forward with severa Systemic diseases, Lupus, Sjogren's, RA & knowing when everything feels so out of sorts, even with the New Year Upon me....

A piece of me feels as if I am blocking out all that we went through with Mom, then losing her in June so suddenly. Then the ordeal of paperwork, and all that happens even after the funeral is over.

Then I've went from one issue such as both ankles severely twisted, to sinusitis, to pneumonia, to Lupus flares, then to take such a horrible fall. and break my right hip in two places... to wind up being in the Rehab on Christmas, and maybe for awhile after the 1st of the year.

I just know that things have to get better. I am so terribly tired of being ill in one way or the other. I tried so hard to NOT allow this to happen to me. I knew my chances of a fall could lead to a break of a bone or joint. That is one of the very last things I wanted r needed. But, when I hit that hardwood floor two weeks ago the coming Tuesday, I knew it was not good.

I wanted to believe that it was bruised badly, yet when I could not drag it on the floor without screaming out in pain, I knew then it was bad.

I've been in a turmoil over the state our nation is in. Now with the "person" that is to be our new President, totally terrifies the hell out of me. I cannot fathom him having enough tact with out own Congress, much less any other nation.

I am having to almost "hide" my feelings this season. Here I see many families, together, excited about kids, Christmas, and this very special time of the year, yet I feel left in a "dark fog" wondering once again why I feel "punished", why did I have to take a fall as I did, and break a hip. And what are the chances that I wind up having another surgery if this hip does not work without an entire replacement since the osteoporosis could cause issues.

Frankly, this is one of the very 1st times I've been this worried about my own health issues. I watched my Grandmother and my Mom be able especially my Grandmother take care of themselves for YEARS alone. Now, I fear everything, from just getting out of the bed to going home. I've always been so bound and determined to do my stuff myself. Now, between the Lupus, the RA, the Osteoporosis, and now a broken hip, that I will lose some of my independence, which that thought bothers me badly.

The latest is I have a huge hematoma where the surgery was done on my hip. I knew it had been looking like a I had "2nd hip" and was sticking out but I just thought it was swelling. But when the nurse went to put a new dressing on it yesterday she found it was much more than swelling, and they took pics of it, and sent them to my doctor. Sure enough it is probably a  huge hematoma, and they are putting ice packs on it 4 times daily, and I won't even get the staples out for another week.

My foot still hurts and I still think I have a hairline fracture in it. I guess I should ask for it to be X-Rayed again. I am just so sick of being poked and prodded on, I hate to say that anything hurts.

I have to wonder if anything in my life will ever become "normal" again?