Showing posts with label osteoporosis. Show all posts
Showing posts with label osteoporosis. Show all posts

Friday, January 26, 2018

Arthritis Foundation and Washington DC March 2018!

It's Time to be United! In the Fight Against this horrific life altering diseases



It is almost here! Another year gone by and time to get to Washington DC with the Arthritis Foundation to get on the bandwagon and get the House of Representatives off their "kiesters" and on up to getting a Cure for RA, Osteoarthritis, and all the many other diseases that an be "packaged" into these... we keep hearing more and more about "pain" and now this "opioid crisis"... 

If there was a "cure" or a way to "regenerate" the damage that so many of this horrid illnesses cause some would NOT NEED pain medications!!!

So, those who get to go, tell them YOUR story, your children's stories, or whomever you are there to represent!


Wednesday, July 19, 2017

Visit with follow up on my Cervical Neck surgery, and facing Lumbar Sacral Surgery in the near future...

I saw my Neck surgeon yesterday, and I told him that I thought I had "bursitis" in my hips, they both hurt so badly, no matter If I walk, don't walk etc... but he says it is my lumbar/sacral spine, as it has been, just getting worse. 

So, I may try to have my pain meds "upped" just a bit, until at least another 6 weeks. He said my neck is "okay" as far as he sees for now. He said of course he can't tell how "fused" the fusions are, but so far, he told me "I am doing everything right" and to keep doing what I am - 

he told me I could drive with either of the neck braces, and that when I am out in public that I really need to wear one or the other, and to continue to use the bone stimulator, and "hopefully" my neck will fuse, then we MUST take action on my lower back. I've had problems for years, and it is really progressing... the pain is horrible and effects my hips more than anything... they have hurt so badly for the past 4 weeks almost that I just want to scream.... plus I am having other issues that are caused from the lumbar spine issues.... 

So, I know I face that.... but I heard a "little bit" of "hope" yesterday about my neck, yet he is still extra cautious wanting to give it all the time we can to heal properly.

Sunday, July 2, 2017

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

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

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

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

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

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

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

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

Monday, May 22, 2017

Deep Bone Stimulator, Cervical Surgery and Life...


I am asking this because I knew when my Orthopedic Surgeon sent in the request for my neck surgery to my insurance, he had added something about a "deep bone stimulator"... I knew they used them, especially on osteoporosis patients, that have issues with bones not wanting to heal as properly or quickly as some others without the issue. Plus even with osteoarthritis, and like RA using Prednisone, and some of the other medications they use for RA, they can have an effect on bone healing, especially in the thigh and spine. BUT, he said NOTHING to me before the surgery or after. Even when I went in for my 1st recheck after the surgery, not one word was said, although he expressed concern about the bone back in my cervical spine not being much left there to do something with surgically if this didn't work.

Which left myself and my son and daughter concerned. Thus I am in this damned hard collar for these 5 weeks, which last time i only wore about 2 weeks, then wore a soft one, but I also was able to not wear one and could drive especially here locally. Anyway, I got a call from a Rep about a "deep bone stimulator" but it came in on my cell phone, I guess last Thursday or Friday and I never got the voicemail. I've noticed that happening some, not all the time, but at times either the phone does not ring long enough, or I don't find out about a voicemail or even text message for a day or at least a few hours. So this guy I guess works for a company in Plano TX, and was going to be down here last Friday in the area close by, in Waxahachie, and was supposed to try and get down to me, because MY DOCTOR had ordered it and my insurance had approved it... well I knew that it had been approved for a YEAR! I got notice from my insurance company twice in fact 3 times about the surgery and this stimulator being approved by my insurance. Anyway, so I didn't even get the message until yesterday, and called him back and left a message. What did get me, I guess the main company maybe located out of state or something, but the phone number he called from and gave me was way out of state, like on the

 East Coast, but he did say he was located in Plano.... so those kinds of phone calls get confusing. I've had several calls on my cell lately, that are "bogus" or either someone who had the number before gets a call and that has happened a couple of times, but what I thought is they HAVE TO HAVE CALLER ID. I know on my home phone if they don't have caller ID, I have them blocked... anyone legitimate will have a caller ID name... now I know they can get around that now and do by putting something in their that is not their real names, but it burns me up, for one and I am going to let my cell phone company know I am NOT getting my voicemails promptly, and that numbers are coming up "odd" and with no caller ID on them... so when I number comes in from some state that is strange and I do not know anyone from there, I don't answer it or it is usually someone trying to cause problems so I block that number. Fortunately, the guy left a message, so I knew to keep that number, but he had his name on it also. What also gets me though here it is 6 WEEKS, almost 7 since my SURGERY, AND THEY ARE JUST NOW GETTING THIS BONE STIMULATOR ON ME???? I read that should have been done on my 1st FOLLOW UP VISIT, NOT 8 OR 9 WEEKS AFTER SURGERY!!!

 I was so pissed about it, because I hate this damned collar, I am worried as hell and want to do things around the house, but everything I do I feel like I am not sure whether I should or not... even typing on the computer, I am concerned over... I know this doctor is going to get a piece of my mind when I go back in... this is ridiculous to not have something that important with me to use, supposedly 2 hours a day! I am so fed up with the entire thing. I am mad that I have to have this one for the holidays and my daughter and her family are coming, and it is my youngest Grandson's birthday... this will be the FIRST BIRTHDAY I get to celebrate with him since we live so far away from one another... I am so excited about it and we are taking him to the Fort Worth Zoo and in fact I have never been to it, I have the Dallas one, but not the one in Ft. Worth! I hope the weather is decent... I know right now it is not looking all that great for the holiday weekend.... and the Seniors are graduating this Friday also, so I hope they can have it in the football stadium... and they will if the weather holds out.... anyway, life sometimes just irks the heck out of all of us I know...

Tuesday, May 2, 2017

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

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

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

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

Wednesday, March 22, 2017

Rheumatologist visit went well, start Enbrel when insurance approves it, still pissed at Congress, dealing with severe pain in many joints & trying to get the word out for everyone to write Congress & let them know about the business of insurance, cutting "entitlements" and more...

I had a very "good" visit with my PA yesterday at my Rheumatologist office. She FINALLY BELIEVED AND SAW JUST HOW SEVERE my RA has gotten since September last year. She immediately saw the severe swelling and inflammation in 16 of my JOINTS! 
 
I also have "synovitis" in between several of my finger joints on my right hand, swelling in my ankle is somewhat from the RA, and the stiffness, weakness in both hands, my ankles, hips, feet all related in some way to the RA and Lupus. She has put me on Enbrel. She felt the Xeljanz would not "touch" the severity of the RA now. She said if the Enbrel worked somewhat in about 8 weeks or so, she may consider putting me also on the Xeljanz also, to help the Enbrel. She said we would "try" to get me off the daily Prednisone, due to my osteoporosis being so bad, and she agreed it probably has something to do with my fractures of my hip. My Orthopedic surgeon said the same and so did my PCP. They felt although the fall was very hard on that hip that I may not have had a fracture if I had not had the severe osteoporosis that I do. 
 
I see my Cardiologist next week, and if she says it is okay for me to be put back on one of the pills for osteoporosis, although mine is already severe, it "may" help to protect me from just having a joint "break first" then me fall. That happens at times with severe osteoporosis. It happened to my Grandmother. She did not fall 1st then her hip break. It broke and then she fell. My parents next door neighbor also had that happen. She was just walking down the hallway in her home, and her hip broke. So, thus the reason for trying to get me off the Prednisone and hopefully on one of the pills, like Fosamax. I cannot have the injections again. 
 
Once you have those for a few years, due to the other issues that can cause, with a particular type of complicated femur break, I would have to just go on the pills instead. I see my orthopedic surgeon next Monday to hopefully begin getting me prepared and okayed by my insurance for my neck surgery. I am in so much pain, honestly all over, I can barely stand to move, yet if I sit for just a bit, then I am so stiff, I can barely get up and try to walk. So, it's damned if I do and damned if I don't. Plus now not only am I fighting those damned red "paper wasps" already, but the yellow jackets, and last night those damned "salamanders" showed their asses on my porch. I happened to have my fly swatter and knocked the hell out of him. Hopefully that is one less, it was a grown one so those are the ones that can breed the little devils that can breed in dozens very quickly. Then the gnats are nuts, the "May flies" are crazy, fire ants... dammit without any "winter weather" all of the "bugs" are just everywhere. We still don't know what this "bite looking rash" is... she thinks maybe some type of dermatitis, but I still think it is shingles... just not as strong of a case of them due to the Valtrex, which she said they do use for the shingles. I hope the insurance approves the Enbrel quickly and gets it out to me... I am in such severe pain, it is horrible....

These are the very issues, like insurance and the Enbrel, and "cutting things like Medicaid and other entitlements to those who need the insurance so badly due to severe and chronic illnesses, many that need expensive medications and continued medical care that means "Specialists". We also NEED the NIH to be able to have funds to continue research on so many illnesses... things are just a damned mess with our government and only us, the PEOPLE can do something about it!

Friday, February 17, 2017

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 :)




Thursday, December 29, 2016

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?


Tuesday, January 26, 2016

Boron Borax Therpay for Arthritis, Osteo,RA, Osteoporosis, Joint Pain, Inflammation - A Natural Supplement we often Lack - been known since the 60s

I happened upon an article about Boron or Borax therapy, that proves to be extremely interesting. I know that Borax that I buy in the box and put in my laundry is an all natural type of supplement, and I had heard about studies on it back in the 60s and the health benefits it has on us.

We NEED an amount of Boron in our systems, to help keep us from having JOINT PROBLEMS, arthritis, stiffness, swelling, osteoporosis, even helping to keep you from having kidney stones, and so much more. I had forgotten about it until I read another article this morning, and I am doing some research on it, but I think I will take some Borax (i just used the rest of my box in with Arm and Hammer Washing Soda and mixed them, so I will have to buy another box, but basically it is the very same as going and buying Boron Tablets. 

You can mix like an 1/8 of a teaspoon in a liter of water, and drink it. There are several ways people do it, drinking it during the week, and then not on the weekends, or drinking it one week, and not the next, and alternating. BUT after reading several articles on this, I think I will buy a new box and give it a try. I looked up the pills, but that means another expensive and it is all the same. 

One in a box for laundry and cleaning and the other in a pill form, of the same thing. I think it is well worth the try when you read about the outcome from many people... and of course our doctors, and pharmaceutical companies do NOT want this information to become viral, because if what I am reading it true, it would put some out of a job, and do away with some of the horribly expensive medications we are given.... I am still reading on this but here are a few links....



http://www.health-science-spirit.com/borax.htm


http://cheflynda.com/…/the-inexpensive-arthritis-osteoporo…/


http://invalid.invalid/


And you can do a search and find all type of articles about it...

I am very impressed as to what I have read, and as I said above, I had heard about this several years back, and seen a new article about it, so I decided to do a bit of research on the subject.

I have to go to the market and get a new box, since I just emptied mine and mixed it with Washing Soda, I mix both of them and put it in my laundry, and use it around the house as a natural cleaner, with no toxic chemicals in it... 


Of course before you try it, I would make sure it does not interfere with any of your others medications, and you may want to ask your physician. Although for myself, since it is a substance in our bodies, that we probably lack due to all of the other junk and chemicals we put in it daily, I see it like a green tea pill, or other types of supplements. I already take B-12 in pills and monthly injections.

But, as I said I am NOT a doctor, so make sure you do what you need to do before trying this, or anything....

Wednesday, December 23, 2015

PLEASE REMEBER to Put Your Personal Stories and Comments in - THE CDC NEEDS TO know how we feel! This can have a dramatic effect on our lives in the future!


The link below will take you to the docket and to where you can comment. As of this morning there are 500 comments, and we need more like 5,000 or 50,000!!! I know there are MANY, MANY MORE out there that have not commented yet on this vital and important subject. PLEASE take a few minutes and go to put your comments in.

I know we are busy with the holidays, but this could truly effect the rest of our lives and holidays in the future!

I saw many "names" I recognized, and also you can be "anonymous" if you prefer. Whatever you do, get your comments in no later than January 13th, which is not far away.



By the way, the link works, not sure why this "sign" comes up as far as the link:


http://www.regulations.gov/#!documentDetail;D=CDC-2015-0112-0001

Here is my comment and gosh I could have written 4 times this much!

Here is my "comment":


"First of all I want to Thank the CDC for allowing "us" as patients, along with physicians, caretakers, and those who see what chronic daily pain does to people's lives. Even in my 20's, and 30's, due to severe migraines, although trying to work, raise two children, go to college at night, and do everything in life that needed to be done, I found myself in the emergency room once, twice, even three times a month. I missed days of work, that led even after being employed for 6 years or more, to me either resigning due to the severity of pain, nausea, and all that went along with migraines, other than being fired. As time went on, in my mid 30's my joints literally began to fall apart. I had knee pain, neck pain,shoulder pain, elbows, hips, and went through surgeries trying to rid my body of pain, so I could have "a life". Back then women stood as being "stressed, having hormone problems, have anxiety" when we went in complaining of "pain". I went through every type of treatment, from injections into the back of my occipital nerves, to chiropracter's, to every type of a specialist, even being hospitalized with special treatments, yet nothing helped. My Internal Doctor would give me "some" pain medication at times, but never really enough to help me with the severe pain. By the time I was 35 multiple joints had been through surgery, I had a hysterectomy, and I knew even back then "they" the medical professionals were "missing" something. I ate properly, I exercised daily, I kept my weight down, I "appeared" healthy, but the pain continued. At 40 years old, I had my 1st heart attack. Out of the blue, no "symptoms", just on the 8th day of January 2001, I took myself to the ER, a drive of 20 plus miles to the ER, and I was having a heart attack. I was told that if I did not get away from the "abuse" at the time that I had been enduring, either the "ex" would kill me, one way or the other. So, I left my home & moved to Seattle WA. I spent 6 years there, "getting well". In 2003, I began to have severe pain everywhere. I was seeing a pain doctor, who was giving me a very tiny dose of pain medication, again but not anything that was enough to help me to try and "live" with a quality of life. I was so ill, I had no choice but to resign my job, and file for my complete disability. I could no longer work, any type of job I was trained for, under as much pain as I was in. I had been told by a PCP at the time, he felt I had some autoimmune problems, & should see a Rheumatologist. With no insurance, no salary, it took also almost 3 years and 2 appeals to get my complete disability, when I did go in front of a disability judge. By this time, I lost my Dad, & was my Mom's only child, & had to move back to TX. After many surgeries, knee replacements, shoulder replacement, elbow surgeries, back and neck pain, my PCP did some extensive blood work and I had Lupus, RA, Sjogren's and Raynaud's. Which all explained the deterioration of my joints, connective tissues, my spine "giving way" (I also have osteoporosis in the most severe of forms), yet still I fought to find a pain specialist, someone who could take care of the pain problems, that had plagued my life for 40 years, and that meant medications. We "fixed" what could be fixed, but some things are just going to cause chronic daily pain, and the only way for me to have any quality of life, is the medications, that are of course opioid in nature, narcotics. They are the only things that "helps" me to get the "edge" off the pain, so I can have somewhat of a normal and decent quality of life. I have never had a "high" off of them, not even wanted one. All I want it to try and have enough pain control, that I can try and enjoy what time I have left, after 55 years of living with so much severe pain. And no they cannot "fix" or completely rid anyone of all pain. But, they can give enough relief so you can deal with what pain is there for the most part. It infuriates me to be "lumped" into those who "choose to abuse". The people that either steal medications, or "quacks" that cause us as legitimate pain patients, to feel like we are "addicts", which we are NOT! If I could throw away all medications now, and not have pain, I would be happy to. Even after all I have endured, I came down with abscesses from my "Rheumatoid Arthritis" medications, so those had to be stopped. I need two new surgeries, due to degenerative disease in my cervical and lumbar spine again. My story and journey through this is so long, that I am writing a 3rd book about my own nightmare of pain, of not be treated when I should be, not getting the medications I needed, and the horrible time I see so many others having, all of their stories much like mine. I am an Ambassador for the Arthritis Foundation, an advocate, doing activist work, all for autoimmune, chronic pain, heart disease, trying to get new medications, new treatments, a way to change the "Faces of Pain" forever. We can and need to move mountains. "





Friday, July 3, 2015

Necrotizing Myopathy: Are Statins to Blame? Article from Med Page Today! Something you may need to know more about... "Muscle Pain"? Not sure why? On a "statin"?? This maybe the answer...

 


This is very similar to what I went through a couple of years ago. I was on a statin, NOT for cholesterol issues. But, a statin, a small dose of blood pressure medication, and Lasix has became a "norm" for many who suffer a heart attack. IT seem the combination help to lessen chances of another MI. But, when I went in with severe muscle pain, especially in my calves... plus fatigue, weakness, and so forth, my PCP checked to see what my levels were to make sure I was not suffering not just from Myopathy, but worse, it can turn into Rhabdomyolysis. plus due to the fact that I also suddenly had double vision which grew worse as the days went by, my blood tests confirmed I had "muscle damage" in my blood. Much like the "enzymes" they look for immediately when the suspect an MI, also basically the same he found those enzymes and I should have not had any. Of course my situation was even more complex. I already had 2 "heart attacks" not just one. So, it was even more important to try and do any and everything to NOT risk another. Yet, the myopathy can be dangerous.... and it can cause permanent damage if left unchecked... so I had to go off the station for 3 months, or until my blood work showed NO muscle damage. So, just like "Prednisone" as my PCP calls it for me a "necessary evil"... without it, I honestly think I maybe unable do do much of anything. It helps to keep the severe inflammation down, but also again in turn, now I have severe osteoporosis due to the Prednisone and I am also "pre-destined" to have it due to genetic reasons and even the AI illnesses. Seeing this article once again brings to mind HOW MANY COMPLICATIONS, other illnesses in "tandem"... the meds and their side effects... all come with Autoimmune Illnesses, and arthritic illnesses, and many other chronic diseases, such as FM,CFS/ME and MANY others.... as PATIENTS so MATTER "what" a doctor might "tell me" I AM STILL going to be an EDUCATED patient~~~ I thoroughly believe some of my treatments, and even maybe some of my diagnosis, would NOT be right.... had I NOT became an EMPOWERED and EDUCATED Patient! I also know there is LOTS and LOTS of "bogus" material out there in the WWW... so you truly have to be diligent when it comes to what you think is accurate... but I NEVER hesitate... IF I Read, or see something online I feel "maybe" something my doctor had missed or not thought about and so forth... I PRINT IT, TAKE IT and Ask him to either allow me to ask questions, or let him read it.... or us just discuss the "main" issue whatever I bring in maybe relative to my situation.... of course I AM NO DOCTOR and by NO MEANS think I "know it all" ... YET, when it comes to OUR BODIES most of us especially women KNOW things very well..... Sometime I feel as if I am "educating" my doctors, and sometimes they tell me, that I am helping to bring new light to the subject.



Monday, June 29, 2015

Ankylosing Spondylitis, Spondyloarthritis, Axial Spondylitis, AI, Hip,Lumbar/Sacral Spine Pain, Surgery, and Tests, Discogram

This comes at an EXTREMELY important time in my life as of now. I saw on my orders last week for the "discogram" that "Spondy" was also what my Orthopedic Surgeon felt was a part of my issue. I already have severe osteoporosis, which shows in my lumbar spine, my hips (both), and then in my "femoral" portion of my leg. 

Honestly, I didn't know a great deal about Spondylitis, Spondyloarthritis, or even Ankylosing Spondylitis, until lately. Of course I knew it is an autoimmune disease, and knew some things about it, yet, not until I began to have the very severe problems with both hips, especially the horrid pain, I can't sit for long, or walk for long... many things do really make the pain much worse. 

Then I began to look a bit into it, and mentioned it to my Orthopedic Surgeon. 



This in red represents my own DEXA scan (a 2nd one) and the results of what is shown to be severe osteoporosis.

DEXA Scan Results for myself in 2013

Summary :
 
Osteoporosis in the lumbar spine, femoral neck and total hip. The
bone density at the spine was overestimated due to degenerative
changes, as suggested by the significant discordance in the
density of the individual vertebrae.
Area BMC BMD T T% Z Z%
L2-L4 43.92 33.73 0.768 -2.8 71 -1.8 79
Total Hip 34.44 21.84 0.634 -2.5 67 -1.9 73
Femoral Neck 5.34 3.06 0.573 -2.5 67 -1.5 77

Comments:
DXA of the lumbar spine (L2-L4) reveals a bone density of 0.768
g/cm2. This value is 2.8 standard deviations below the mean for
young adults, and represents 79% of the mean density for
patient's age. Femoral neck bone density is 0.573 g/cm2. This
value is 2.5 standard deviations below the mean for young adults.
Total hip density is 0.634 g/cm2, a value that represents 2.5
standard deviations below the mean for young adults. Hip density
represents 73% of the expected density for patient's age.

___________________________________________________________________________________

These numbers show my hips, lumbar spine as talked about and femoral neck bone all show severe osteoporosis. Thus this could be also associated with spondyloarthritis, axial, and so on... As horrible is it is to know I am "shrinking, now by almost 3 inches in the past about 5 or 6 years... and knowing a fall, or sometimes with severe forms of this, you can actually do nothing but walk across a room and a hip break, or the compression fractures are usually a huge concern, which is one reason they are considered about anyone "shrinking" We all do to a certain extent as we age, but this is different for sure. I was happy to see this article and wanted to share it with all of you. 


 http://www.medpagetoday.com/Rheumatology/BackPain/52341?xid=nl_mpt_DHE_2015-06-29&eun=g773630d0r

Friday, June 26, 2015

NEVER HAVE A DISCOGRAM if you can AVOID IT!!!

Gosh, talk about the test from HELL!!!!!

I am home now though... and through... just HOPING they FIND the problem... I know I just cannot fathom NOT finding something... so I shall see... they did 4 levels...


and those needles DO NOT FEEL good and when they put pressure in them with the dye that is even worse.... anyway... awaiting the results and I hope that is early next week... I HATE having to wait for test results...

by the way NO SEDATION, NO PAIN MEDS nothing... I knew they needed you Lucid enough to be able to tell them about the pain no pain where and so on... but usually they at least give you a mild sedative to help you relax.... long story... I shall tell more later... I am off the to sofa the rest of today, and maybe a bit tomorrow...


oh by the way I noticed "ankylosing spondylitis" was actually "one" of the diagnosis was that my Orthopedic surgeon had down... even though he "blew me off" when I asked when I saw him, but he did have it in with my diagnosis!!!!



http://www.mayoclinic.org/tests-procedures/discogram/basics/definition/prc-20013848

My Facebook Post about this Ordeal!!!!




Okay guys and gals... just a quick update!! FIRST OF ALL - NEVER have a DISCOGRAM if you can POSSIBLY AVOID IT!!! No "sedative" at all... no IV, no even pain meds when they were through... and he stuck needles in FOUR different places in my lumbar/sacral spine!!! It hurt like hell, and even hurt worse taking them out... needless to say, I PRAY we get some "positive" news... so I can move forward and get out of this horrid pain.... ALL that you read about these things and MORE are TRUE!!! BUT, of course that is the purpose... to inject that dye into the places the doctor deems causing the problems, THEN the dye pressure gives you either "pain" like you have, or MORE pain, or even a "different" pain... or sometimes no pain... thus it is strictly a diagnostic tool, so you have to be "lucid" enough to be able to tell them what it "feels" like, BUT some of the docs at least give you a bit some type a sedative, so you are at least relaxed a bit.... anyway, it is over and done with NOW... hopefully I will know something next week. In fact my Orthopedic doctors nurse actually called me while I had it done, and so I called her back to tell her yes, I just in fact finished it and was leaving the hospital... I was supposed to already have had it done several weeks back, but with illness, flares and so forth I had put it off. So, I HOPE they FOUND something!!!!! The last thing I want to hear is they FOUND NOTHING.. that would suck... I am off to go back to the sofa and rest for the day with the pups.... and will tell you more later when I am feeling a bit better...
Here is a link to just one site about this....

Sunday, June 7, 2015

Osteoporosis And My "Severe" Range Numbers...

I haven't been able to sit and write much. I was gone for a couple of days for a "girls get away" trip with my Mom. We went to OK, to the Winstar and just had an incredible time!

But, with the issues I've had with my very lower spine and hips, the sitting really did me in. I've spent the last two days trying to recuperate, and I am already having massive issues with severe pain, burning, even all the way down into my heels at times. A CT scan shows some issues at L-5/S-1 & 2. But, it is really not able to tell us just how badly it is. I suspect a probable compression fracture or maybe 2 due to the severity of my osteoporosis. It was something I never really thought much about until I had my first bone scan about 3 years ago. I was totally blown away by finding out I had not just the disease, but SEVERE osteoporosis.

I began doing research to find out, due to the RA, Lupus, Prednisone for the illnesses, my tiny bone structure, and several other things all contribute to my having this disease. My hips are totally with it, as well as my "femoral neck" and my lower lumber spine. Thus I feel that is where the compression fracture or fractures could be. Due to having a internal pain pump I can't have an MRI. But, we already know, I have had more than one time of having a "scan", then going on with surgery only to find out the surgery really showed the severity of my problems. My joints are just being destroyed.

Anyway, I had not wrote but a bit about it, so I decided to at least post this, along with this URL:

http://en.wikipedia.org/wiki/Osteoporosis

And I will continue later... ;)

Thursday, May 21, 2015

Women, Fashion, and Our Health "HIGH Heels" How many of us would say "we don't like them?"

As I had posted on my Facebook page, that all of us as women, and especially those who have worked or work in many type of business scenes, of course felt HIGH heels, were almost a must.

I know for myself, being in the banking industry for so many years, and then in a business office for a hospital for years also, for the most part dresses, or skirts and tops/suits were a requirement. It just made sense to have a nice pair of heels to go with certain attire. Or take for instance, going "out of the town", or to a party! If a woman is dressed to the "nine's" in a beautiful evening gown, heels are usually a must. I admit I had a pair colored for just about every outfit I owned. Yellow, several pairs of black and red heels, white, orange, green, royal blue, silver, and some of course that have been my favorites are platforms heels. I have two pair in my closet right now that are about 6 inches and platform. I LOVE those heels! I got those back years ago, before "platforms" and "extreme heels" were in fashion. At that time it was almost hard to find a platform very high heel, let's say like my idol "Stevie Nicks" wears.... and at past 60 years old, probably closer to 65, she STILL wears them! And she still ROCKS the stage.


Yet, most of us knew and know that heels are horrible for your back, legs, feet, and body in general. If you take a "spill" in a pair, you can do some damage to yourself also.

So, now at just over 50, if I could still "rock" those heels, believe I would. I still have my white pair from my wedding, and I have a pair of black patent ones that I still brave at times.

But, I've had two knee replacements, a complete shoulder replacement, a neck surgery, more issues with my lumbar spine now and legs. Plus I have osteoporosis. So, me trying to wear a pair of really high heels, could cause several broken bones, if I were to fall.

I still love them. Each time I walk by the shoe department in some of the upscale places, I almost cry, because I could and would love to have a pair of several each time I see them.

But, as this article states, they are not good for us at all, and quite frankly most of us, if we really tell the truth, they are uncomfortable on our feet. After walking in them for a while, it is just horrible, yet we put up with them in the name of "fashion".

So, here is the URL to the article:


http://www.bbc.com/news/health-13725998?post_id=10205650591438923_10205650591398922#_=_

Now these are what I miss!!!

Tuesday, March 24, 2015

A Bit OF "Personal" Goings ON I wanted to share....

In between all of this, I have not mentioned that I got a call from Mom last night. Her last living sibling, her sister, who is about 3 years younger than Mom, has been battling "terminal" stomach cancer for a long while. Well, my Uncle called Mom and told her that my Aunt now has Hospice coming in all the time. I feel from what he said she does not have much longer. So, this week is so nuts for myself and Mom, that I hope and pray my Aunt Geri makes it till Thursday. They live in Mesquite up by Dallas and it is not far from my Pain Doctor. I have an appt with him on Thursday afternoon. So, our plans are to go up and visit my Aunt for a bit, then go on over to my doctors for my appt. This is a horribly busy week for me, and I am already feeling run down. I had the CT Scan done earlier this morning, and now we shall see what that has to say. I fear it will not "show enough"... which as stupid as this sounds, I hope it DOES show what the heck is causing all of my added pain!!! My pain doctor is going to "up" my medication in my pump, so we need to know where the freaking pain is coming from. I feel it could be from "compression fractures" due to my osteoporosis being so severe. But, I am also having major pain in both hips... and then down the back and sometimes front of my legs, all the way to my heels. So, please keep my Aunt, My Mom and our family in your prayers. This is my Mom's last "close" family member, besides myself and my two kids. So, she has lost my Dad, both her parents, and then her brother and sister in law. I know she is taking this much harder than she lets on. I am worried about her too... she kept repeating herself and asking me the same questions over and over today when I dropped by, so I know she is just upset, plus I feel she may have some "dementia" herself. Both my Grandfather, he had Alzheimer's and my Grandmother had dementia... so it runs in her family... also my daughter and her husband and kids are really going through a tough time right now.... more on the level of a job situation, and has to do with the oil business. Her hubby has worked for this company for 10 years or more... and there is lots going on for them also... so I would really appreciate your positive thoughts our way...

 

 

Of course, everything always is either feast or famine and we don't realize at times when something either keeps us "home" rather than going where we feel we should be, or having to be some place and you never expected that either. I've been waxing and waning now for months with this "new" type of almost at times unbearable pain. But, this is my hips, my lower back, then down my legs almost into my heels. It seems to be worse on my feet, or if I stand or walk a bit more than around the house. Yet, now I notice if I sit here at my computer in my chair, I also begin to hurt and I have to get up and walk away... so it is almost damned if I do, and damned if I don't.... I shall update my post as things happen.... until then keep all of us in your thoughts and prayers.... Rhia

Thursday, March 12, 2015

Advocacy, Ambassador, Activist, Volunteer - All out of a Desire, Passion and Compassion to help others... and the heart of my own dilemma this Annual Arthritis Summit 2015

I have something to share with my dear "Online" and "Off Line" Friends. Each of you have been and continue to be a true inspiration to me. Whether it is about something I write, my books, poetry, my blog, my pursuits as a patient with several chronic illnesses and chronic pain issues, wife, now also a caretaker for Jim after the accident, that will be a year ago March 26th. It seems impossible but most of you recall I was actually at the Arthritis Foundation's Summit on Capitol Hill last year, when I got the "call" that everyone dreads... an accident, all the way back in Dallas, my husband. Basically, "ran over" by an 18--wheel tractor trailer from behind. I am STILL and always WILL BE EXTREMELY THANKFUL for the Kindness, the compassion, the friendship, and the honor that all of the ones there at the Summit, as well as those in the Foundation who helped me get aboard a plane in DC just hours later, headed back to Dallas, to Baylor Hospital. The outcome I was not sure of, and I was so very blessed by those who directly helped me that fateful day. Chris Nieto​ was and still is an angel. He helped me with everything from taking all of the information down from the Emergency Room Trauma doctors, to making sure Laura helped to get me board the plane, and he happened to have been flying back to Dallas himself, so he, Serena, and others from the Summit gave me such a "foundation" to stand upon, as my entire world literally crashed down around me. I look back, and I crumbled to the floor as my daughter told me about the wreck, and Chris began to read off the "numerous" injuries Jim sustained. From almost EVERY RIB broken, to his back basically "broken in two" - - from C-7 through T-7 back surgery done within hours of the accident. A concussion, fracture of the shoulder, possibly a leg, a "nick" in the aorta, and the list just read on and on.... Anyway, all of 2014, we spent either with him in the hospital and the rehab hospital over 3 months. Then several more months of going back and forth several times weekly for rehab... and just a score of doctors visits... plus of course all of the "red tape" that yet has not been settled...

So, moving forward... I was HONORED to be given such an incredible title in my advocacy work, as "Platinum Ambassador" for the Arthritis Foundation. I spent time when I was not either ill myself, or having all of my teeth pulled, and replaced, or any number of other things, to be able to attend the "conference" meetings, make some relationships with some of our Congress People, and do all I could with a true passion to HELP ALL of those out there like myself, suffering from these dreadful diseases....

After my DC visit in 2014, I was so totally elated and felt so privileged to perform one of my "long time" dreams, and that is to "stand on the White house steps" and TELL MY STORY! Well, that dream came true last year in March, 2014. My plans were also to BE BACK  this year in just two weeks, and again be able to STAND with such an INCREDIBLE Foundation as the Arthritis Foundation, and be a part of their wonderful advocates!. When I found out at the very end of 2014 in December or so, that I WOULD BE ABLE TO GO back to DC I was on "cloud ninety nine"!  Of course, my health has waxed and waned, I still have yet to COMPLETE my entire ordeal of these "mini dental pins" in my bottom dentures... due to all kinds of complications, including an "oral-maxillary communication" in other words a "hole" between my mouth and my sinus cavity... and infections etc... yet, I had bought new boots, had all of my clothes lined up, my "ducks in a row" all ready to go back to DC in two weeks!!!

Well, these illnesses "don't care"... they don't care if YOU have PLANS... they don't care if you have to "miss" something you so want to do, they don't care what else is going on in your life...  if "they" decide you will be sick, then sick it is... YES, you can try and push through it, you can try to ignore a flare, or not deal with medications, or not rest, and just do as you wish. But, when it is time for a chronic illness/pain issue arises, it WILL put you DOWN... and you have no choice... you cancel parties, plans, dinners, you don't celebrate holidays when you should, or you miss birthday plans... as we speak of often in the "spoon theory"... you have so many, and you can "borrow" a few... but when there are none, there are none.... thus... due to my own personal bout with several health issues due to the RA, Lupus, Sjogren's, and so forth, my "health" has been not so great, and I've been trying my best to "ignore" the ugly truth... but much to my disappointment... I am still not well, I probably am going to go through some major medication changes, now I am FINALLY going to have the bottom dentures pinned... after all these months of waiting... and not being able to eat much, or if I talk much, the bottom ones slip and slide around thus, I have heck even keeping the top ones from slipping also... my pain level has jumped through the roof. We are not sure if it is lower back disc compression fractures due to the osteoporosis, the RA and my hips, other leg, nerve issues, or what... plus I have just all of a sudden soared in having several Lupus Migraines... they have gotten so bad... and with Jim not able to drive, and his own medical issues with the  Paraplegia causing bad balance problems, where he can't bend forward, or he would fall, he can't go down stairs without help, there are just many things we take for granted daily, that after something like his accident, are things that are just not possible, no matter how small they may seem. He is not able to get things if they are pushed back far into the Fridge, or in a cabinet. He can't climb up to get things out of our very top cabinets... and so that makes it also very difficult for me to be gone for several days... we thought we had that all taken care of, and that person now is having some other family medical issues, thus I don't have them to come and help him out while I am gone, as we thought. So, between all of the "little things", the big "elephant" in the room of course is... I with very deep sorrow and disappointment, must bow down and not go physically to the Arthritis Summit this year. It took me over a week of crying, kicking myself, feeling guilty, being mad, sad, and all of the other billion emotions wrapped around this for me to just have to admit that I am just not physically able, and with family things also, to go this year. I will of course be ON BOARD 500% as and "E-Summit" Attendee... and PLEASE ALL OF YOU take a moment, and go to the link I have provided several times and send in your letter. They WILL BE HAND DELIVERED to YOUR Representative. So, it is vital you get to say your own personal things about these dreadful and unacceptable diseases. I hope to be able to "pinch" myself, and wake up from this nightmare... but no - not a nightmare... it is just the truth and I had to face it... one thing I have "gleaned" (honestly many) but one thing that I have learned about my personal advocacy, activist, volunteer and ambassador work, is that it comes from A VERY DEEP PASSION AND DRIVE and it just as important if not MORE IMPORTANT than a "regular job" People that do this type of thing do it from their hearts, minds and spirits.... we "live" to help others... no "glory"... no "personal gain" honestly... but out of the sheer passion of knowing WE HELPED - WE GAVE VOICE to a patient, or patients... that is WHY MOST of us do this... out of the desire, love and compassion to help others feel better, and live a better quality of life....


Rhia

Please see this URL to SEND IN YOUR LETTERS!!!

http://www.arthritis.org/advocate/advocacy-summit/virtual-summit/letters.php?utm_source=LetterWriter&utm_medium=email&utm_term=Advocacy&utm_content=body&utm_campaign=031115
 

Sunday, November 9, 2014

Some of Life's Little Disappointments - Especially When It Involves People, Promises and Illness

I've been on what some might call a "tear", "Rampage", "soap box", "griping session", or just plain bitchaaaching and griping over the past couple of weeks.

As this age, one would think by now, I would totally understand PEOPLE will let you down, disappoint you, make you feel less than, not as good as, or like you are some 3rd "rate romance", in some "motel rendezvous" - Touche' as some would say. A title to a song by Sammy Kershaw if my memory or what's left of it serves me correctly. Well, someone may have actually recorded it before him, but I do remember liking his version, especially with his voice singing it.

I am NOT "literally" speaking of any "incident" involving some 3rd rate romance or any kind of motel rende-anything... but the "feeling" you must have when you feel like you have some how it "bottom" of the pile of humanity. Those that seem to be sitting on top of you, and not even caring they are smashing your
"innards" onto the floor just beneath you.

I will say, taking totally up for ME, I've in all honesty, sick, not sick, felt like crap or not, kind of like "sickness and in health" have worked my butt off the past two years and honestly more, as a voice, advocate, volunteer, activist and Ambassador for the things I hold near and dear to my "stance" about humanity. I am definitely and maybe even a bit defiantly cut from a "different mold" than some. I would think that from the time I was about 4 years old, I totally became different than many kids, and later on, than many adults I have known or heard of. I have kind of "beat and whistled" my own horn and drum so to speak. I rarely go for the "normal" of anything. I've never felt being "normal" was anything but basically boring. And who in this day and age of almost being able to do anything... the SKY literally is the limit... would want to spend their life normally boring??? I did for years, OR I tried to "think" I was going with the general flow of those around me. Well, hell, I can attest that now I realize where I went, what I did, who or whom I met, saw, spoke to, and how I decided many years ago to live my life... was for many NOT considered anything but normal.


Sometimes I have to wonder if that is the reason I am "chronically ill".. as silly as that sounds, let me explain further. For those of us that are fortunate enough to have very little issues with our health, then you truly cannot possibly put "your feet in someone's shoes" that are chronically ill and/or in chronic pain. If you have been one of the people that rarely missed a day of school, went on to college, and the same happened, then you went out into the working world, got a job, and you just never miss work because of illness, surgery, and so forth. I have to wonder if that is even the "norm" now days. Maybe it is because I am a fully fledged "chronic illness" survivalist, that knows rarely a day that everything physically feels ALL RIGHT! It is usually one, two, three or more things happening to me physically, that effects my emotional and mental health also. If you awake to pain every morning of your life... you know without a shadow of a doubt (unless some miracle happened in the night) that you WILL awaken with some kind of ache, pain, or something that kind of makes your start of the day, a bit slower than many. For those like myself, that have to run to your desk (well almost more like crawl) take all of the "early morning" medication that you HOPE will give you a reprieve from pain, illness, or whatever maybe happening on any given morning of the week or weekend... so that is in itself is your 1st priority. Then you dive into go and turn on the coffee pot, and probably take a look at the MANY things on your list or lists that you either NEED to, HAVE to... get done... or more like what you can possibly PUT OFF until the next day or later in the day once your joints, bones, hips, shoulders, neck, feet, ankles, thumbs and probably the rest of you are kind of "lubricated", jump started like a small car battery, & then after the brain fog lifts... you maybe able to begin your day.

ADDING THIS FROM TODAY SINCE IT KIND OF GOES ALONG WITH THE ABOVE... NOVEMBER 9TH 2014...

AND HERE I GO AGAIN... STILL ON MY "SOAP BOX"....


As if I were not busy and stressed enough I decided to take the Defensive Driving Test again... just for the 10 percent off my insurance but all and any discounts help for sure. I am doing it all online which is great. But, damned I don't remember it being as long as it is now. It has been a long time I guess since I took it last. So, they have probably added more to it due to cell phones and all of the new technology in cars that can help and also hinder with distractions.... so now I am in the middle of that, along with waiting for Geico to answer a question before I change policies, and then I had paperwork to come in for another thing I am in that has to be done every 7 months, I have three appts next week, the dentist, blood work and my heart doctor, plus my last Arthritis Foundation Ambassador meeting for my year of training is Tuesday afternoon, so I find out it if I've done everything to be an Ambassador, plus possibly did the extra things in order to be a "Platinum Ambassador". I found out the article that I've sent to our newspaper goes in (either it went in yesterday and wouldn't you know I did not get my paper) or it goes in tomorrow. I had an email from the new editor of the paper. I had sent it in about 3 weeks ago, and heard nothing. So, I resent the email, and still did not hear anything. I went down there early last week with a copy of the email and the article. The woman told me then they were having a change of staff, thus the delay. Well, I got a very nice email from the new "editor" who told me he was going to make it a "Highlighted" Article in the "Life Style Page" with my photo on it and everything! So, it is in the works also... but through all of this, then have have a "week" reprieve from APPTS!!! - only to have ONE EVERY DAY OF THANKSGIVING WEEK!! I HAE TO HAVE my pain pump refilled 2 days before Thanksgiving, Mom and I see the PCP the Monday of that week, and then I have to go back to Dallas to see my Rheumatologist the day BEFORE Thanksgiving... when ahe the heck am I supposed to have any time for a holiday... sometime next year I guess!!! It is insanity, and that week will be nuts anyway, due to many being off the entire week, kids out of school, parents possibly taking a few extra days off... I hate to think about Dallas Traffic... especially during the week of a major holiday... nuts, they already can't drive on normal days, much less during holiday time... I dread it... MY problem is also I am not feeling very well at all... I thought a few days ago I might be either coming down with something, or had a flare coming, ... and I just have not had the energy I really need to get over all of these doc visits, taking care of the house, grocery shopping... speaking of... I went Friday for my "stock up" we are OUT OF everything grocery trip... and I knew it would be a load. I took in about 7 or 8 reusable bags knowing I would probably fill them full. Well, I got about 3/4 of the way through my list, and I was hurting so badly in my lower back, my right hip and lower back, and side began to just hurt like hell. My feet were hurting like they do in the mornings when I first get up, and I was just almost not able to push the basket around. I had to LEAVE off part of my list, get in line, check out, get them to carry the bags to the car, and go directly home. I was a total wreck, by the time I drove home, got 7 bags of groceries that I could barely lift into the house, and then had to put it all up... myself... Jim helped by helping me empty the bags and sort stuff out, but he can't bend over, reach up, get on a chair etc... so of course I still had to get everything put away, and was grateful I saved 46.00!!!!!! in coupons... but it took me a couple of hours to print some, cut all of them out and organize them, then get them and me to the store, and get them out and double check them as I bought items to make sure everything was correct and check out....then of course as I said above get them home, put up etc.... I have and continue to discover between the time it takes me to get ready, shower, hair, makeup, then to get everything prepared lists, coupons and so forth, put myself in the car, get to the store, and walk through a huge store then get everything home... it takes all of my SPOONS for the Day and then some... and IT SUCKS!!!!! It sucks to feel ill, it sucks to feel old, it sucks to look old, and it just all sucks right now.... I cannot seem to get myself organized enough anymore to keep me from taking 5 times as long as I used to before the illnesses....

Tuesday, October 21, 2014

When You are Fighting Chronic Illnesses, Chronic Pain, Doctors, Pharmacies, and Medicare Advantage Plans - you need lots of ammunition and tenacity...

I have wanted to be able to get to this subject for all of you over the past couple of days. Of course about the time I have a "clear slot of time" open, my email decided to blow a gasket on me. I had also not known about a follow up appointment Mom had to have her semi-annual "cardio-sonogram" yesterday. So, I had to pick her up and take her to have that done yesterday. It's not that it takes that long, but by the time you dress, pick her up, have the testing ran, then get back, visit for awhile, and I also had a couple of errands to run, I felt like my day was gone and I did not get anything I wanted to get done accomplished.
Plus, I had "overdone" it and used to too many of my "spoons" last Friday, so all of the plans I made to do things around the house both Saturday and Sunday, got basically chopped in half. Saturday I was in so much misery, between stiff, sore, pain, a splitting headache, almost as if I had another Lupus or RA flare hitting, that I spent Saturday on the sofa for the most part, and that really frigged up what my plans had been. I have SO MANY things I want to get accomplished around the house, from repainting my kitchen, painting and redoing our spare bedroom that is our "music room", getting the floors put down in the kitchen and bathroom, and laundry room, we still never got all of the outside of the house painted... and things just really took a nose dive when Jim had the car accident, was in the hospitals for so long, in rehab for so many weeks, thus lots got put off until we could get back into some kind of whatever normal was as far as a routine. Well, we have still to find that "normality" or routine. I feel like I fly by the seat of my pants most days... either waxing and waning one way, or flopping around like a fish out of water in another. Nothing ever seems to come easy, no matter how simple, you can guarantee there will be some kind of snag in the line.

But, when I got this ridiculous letter from Humana, My Medicare Advantage Plan. I have had them ever since I first got my Medicare parts A and B, which was about 2006 or so. They have now decided I guess to probably NOT Pay my PCP enough OR my PCP has gotten "greedy", thus he will no longer be a "preferred provider" come Jan 1, 2015!!!! Which totally sucks green pecans, if you know what I mean. This primary care physician of mine is the ONLY ONE who out of all of the tests, doctors, surgeries, and so forth I had had, the LUPUS, RA< SJOGREN"S, and the list continues. Well, Dr. "B" as I will refer to him as, had just gotten to my home town and I was one of his very 1st patients. At the time he was brand new, he was "brilliant" when it came to "discovering" the unusual, he looked at everything with a "fresh" eyes, and he was "up" on the latest when it came to autoimmune illnesses. But, even though I was one of his very first patients, including I got MANY others to move over to him, because I so so pleased. He got me on the right medications, and I did go and find try to find a Rheumatologist, in which I did. But, the Rheumatologist were more on the end for the Rheumatoid Arthritis end of the ball park, Dr. "B" took care of the Lupus. When I have flares, he is the one that gives me the Solu-Medrol injections, the larger 14 days step down doses of prednisone. He also prescribes my MTX, Plaquenil, and small daily dose of prednisone. So, without him I would be back and forth to some doctor in Dallas, that would be the waste of an entire day, more money, more time, for something that can be handled here, usually by a phone call, me coming in, getting an injection, a script and I am on my way.

I am not quite sure who is the issue, probably both... it is a well known fact Medicare and especially the Medicare Advantage Plans don't pay worth a darned when it comes to the physicians, But, if you have someone within 5 minutes of home that can do the exact same thing, you save time, the doctors save time, gas, and things run much more efficiently that a trip to somewhere else for a Lupus Flare.

So, this letter that I receive from Humana explains to me that if I have "certain" health conditions that Dr. B takes care of, then they will make an exception and pay him as they always have. So, out of about 15 health conditions names on this paper, Lupus was one of them. So, I fill in the paperwork, send it off to Humana, and about a week later, very late one evening someone from Humana leaving a message about that paperwork. She said she would call back the next day, and so I expected to get a phone call from them the next day. But instead about 3 days later I get this ridiculous letter, stating that "Lupus" and Hip Pain (I have NO CLUE where "hip pain" came in what so ever") did NOT qualify and they would NOT continue after Jan 1 to pay him as a "in network provider". OMG, I was so livid, had it not been late in the evening by the time I got the letter Humana would have gotten a piece of my mind...So, of course you can send in a written grievance in which I did. I also boldly told them they were not going to get by with blowing me off like that. My "condition" of Lupus was serious, it was something that Dr. B is the very doctor who diagnosed it, he is the one that since 2009 or 2010 had taken care of me, which every time he fills my medications, he does the follow up blood work, he takes care of the "side illnesses" that go along with the Lupus, and not one other PCP is going to want to take on my complicated case due to it is a complexity that has to be kept up with. As Dr, B always knows exactly what is going on. If I have a "new" symptom, he knows if it is related or not to the Lupus, and he also takes cares of my mouth ulcers, thrush, stomach problems from Lupus. As I had said and we know for a fact, I can go from "well" to ill enough for ICU within minutes under some circumstances... just like I had double pneumonia back in April. No one was here but myself, so I did not realize I was running such a high fever I was all but see things and hallucinating. Thank goodness I thought to check my temp and even though I never run fever, I did not usually do so, and if it had gotten any higher I may have went into convulsions. Luckily, I was still smart enough and scared enough not to drive alone, so I called my Mom and had her pick me up that Sunday afternoon and carry me to our Urgent care Center. But, if that had been any other time during the week, I would have called Dr. "B" quickly, and found out I was running 103.9 fever, and had double pneumonia!!!! It was so bad the doctor on call at the center wanted at first to send me to the ER and possibly have me admitted. Well, at the time Jim was in Baylor after the car accident, which he was still in Acute Care and had just gotten out of ICU with all kinds of broken bones, a very long 9 hour back surgery, 17 broken ribs and it continued on. The very last thing I needed was to be put in a hospital down here, and have him in the hospital up in Dallas....

So, having a physician that KNOWS my health issues, ALL of them, how the interrelate to one another, and what has taken place, from surgeries, to the 6 weeks I spent in two hospitals, and almost died from what they can surmise had something to do with the Lupus. But, even in the huge hospital in Dallas, and all of the highly specialized doctors there, many of them were NOT familiar with Lupus, nor any of the health problems that come along with it.

So, I got to thinking about this entire scene, and it just makes me even madder than I was when I first got the letter from Humana! In the first place, IF HUMANA was PAYING the doctors better, then the doctors WOULD NOT be dropping out of being "Preferred Providers"... and if the DOCTORS were NOT SO MONEY HUNGRY they would be "settling" FOR WHAT THE INSURANCE pays them, and not setting their GOALS OF MONETARY GAIN so high they cannot either afford to pay the doctors better OR WORSE they take FOREVER TO PAY THE DOCTORS!!! This is NO JOKE and it came directly from the mouth of one of my physicians!!!!

He had TWO SURGERIES, and I know he meant very EXPENSIVE SURGERIES, because it was probably something like having a pain pump internally put it or something like a stimulator put in internally, which the doctor has to implant. Both of them are very expensive. Just the devices themselves run upwards of 50,000.00 or so.

Anyway, he had two patients that AFTER TWO YEARS OF dragging their feet, the Doctor had to take Humana Medicare Advantage plan to COURT IN FRONT OF THE JUDGE, and the JUDGE MADE THEM PAY MY DOCTOR!!!

But, it took him 2 YEARS to get paid on those two surgeries!!! If he has to wait to get paid on many of those expensive procedures, they will all go broke trying to keep up an office, pay employees, pay taxes, and keep an office up and running. It was insane to hear how long he had to wait and then for a judge to have to demand they pay him what they owed him. I just about let my jaw hit the floor. Now, I also know doctors charge WAY TOO MUCH, to try and compensate for what they are trying to make up on those cases they do not get paid, or certainly not enough. So, it is a circle in circle around and around the merry-go trying to get one hand to a one to pay the other. In the mean time guess who suffers through this??? Yes, you have it.... US, the PATIENTS!!! We suffer added money out of our pockets, paying for doctors and the clinics and tests, and in the end, half the time no one has a straight answer for us anyway. So, now this puts myself, my Mom, and Lord knows how many other patients just like us are suffering through the exact same issues. It is damned if you DO, and you be damned if you don't.

I have even threatened NOT TO go to a PCP anymore, but just use our "urgent Care center" here. They have their heads on straighter than most of the primary care physician. The 3 or 4 times I've been out there, one of which was for a Lupus flare during a weekend, and then I could go there and get checked in, checked out, have my injections, get my prescription and be on my way. To top it off they are the ones as I said above that diagnosed me with double pneumonia, took the X-rays right there, right away, were on the ball and I was out the door and headed home without any hassle. And out of pocket for me was my $40.00, plus I did not get exposed to an entire room full of germs and people running fevers, and possibly get something else, other than what I already had. It was a "pleasant"(if you can call having double pneumonia pleasant" experience, just due to the fact there was no hassle, and I was home and on my sofa within an hour and a half. It took longer for the pharmacy to get my script ready than it did to get through the Urgent care in itself.

Now you can get your flu shots, pneumonia shots, even tetanus and so forth at the pharmacy, they will even sometimes check your cholesterol, blood pressure and so on, including hearing test for free at different times. It is getting to where people don't want to step into the room of a doctors office, because it takes too long, they never answer your questions, once you spend hours getting in, they then herd you in and out like a bunch of cattle, not really bothering to answer a question one you may have. I've gotten to where even my "tricK" of taking my LIST of all the thing I NEED to talk about them with, and he is running out the door before I can ask the 3rd question. As someone who believes in researching everything myself, and also believes that MY TIME, YOUR TIME, OUR TIME IS JUST AS IMPORTANT AS THAT DOCTORS TIME!!! So WHY do WE wait for HOURS FOR THEM!!!


Then they have the audacity to post a sign if a patient does NOT call in 24 hours ahead of time to cancel, they can charge you anyway. But, I've had doctors CALL ME ON MY WAY TO DALLAS FOR AN APPOINTMENT and they tell not to come, because the doctor is out in an emergency or had gotten called away suddenly!!! So, now my day had been half ruined getting ready, getting dressed, wasting, time, gas, and everything else, yet it seems to be perfectly "okay" for them to cancel at the last moment. Believe me I felt like sending them a bill for my time and see what they thought about that.

I had read an article a couple of years back where I woman did just that. She had a doctor cancel on her two times in a row or something, so she did send them a bill for her time and trouble!!!  Whether she ever got able paid or not, but I bet it did put it on their minds. OUR TIME is just as valuable as anyone else's is... whether the doctor, nurse, surgeon or the Pope!!!!

Again though it takes time and tenacity to do that I can see where under the right circumstances it would get the attention of those who think they are "better" than use.


I would be interested in knowing how many of you with Medicare Advantage Plan and possibly have gotten the exact same thing. A letter telling us that our doctors won't keep them on and be "preferred provider" after January1st 2015. If you HAVE either post here, or send me an email because I would love to hear from you. Then also what are you going to do under the circumstances? Change, try to keep your doctor, just pay the "extra" amount and stay, or does it even matter....









Sunday, September 14, 2014

Trying to find My Way Back - to What A "Normal" Autoimmune Diseased Life Should Be...


I began this as a post on Facebook early this morning, Sept. 2, 2014. Yet, after writing on it for about a half hour or more, getting up to check on the dog, and my head pounding... it dawned on me, "Get your other stuff caught up... i.e. make some sugar free jello, make the chocolate fudge cake for the weekend, getting the "stuffed peppers" I bought the stuff to make on the day when it was supposed to be cooling down; thus this morning seemed to be the best morning. I had thought about going out to wash my car. I thought if I did maybe rather than continue to "test" and tease us, it would actually rain. Well, so far I was wrong, as it all has done lately. It seems the weather has made many of us hurt terribly. Physicians (some physicians) want to tell us we are full of bull when we say that the "weather" doesn't effect our lives as far as our pain, joints, headaches, and so forth. I know beyond a doubt that from the barometric pressure, to "cool fronts', the humidity, rain, sleet, snow, thunderstorms, you name it, many will more definitely have an effect on chronic pain illnesses, joint issues, and many of the "2nd, 3rd, 4th, 5th and so on, disease that follow right along with the primary diagnosis. I had been concerned lately over "Shingles". I have seen way too many of my online friends, as well as close kin folks and friend that have had a breakout of shingles. I found articles stating people that have never had them, have well over 2 to 1 (50%) chance of having shingles if you have an autoimmune illness. I've been concerned over my illnesses because I feel I can't quite find a place of "remission" in any of them. I am on the medications, I am trying to do everything I can correctly, rest, eat well (ah, that one is hard with the teeth issues I have)           This next paragraph or paragraphs if you would like to say below are what I began on Facebook. I copied what I had already typed on and then decided I am going to "stick" to my word. I am going to post the bulk of the post here, then just put a small snippet in FB, with a link back to it here in my Blog. Blogger has made some changes, some good, giving you more options and other than just add chaos & confusion. I was hoping FM would slow down a bit and give people time to catch up. Sure many of us are "hooked" on line 24/7/365. But, all too often we don't have time to sit around and figure out the "new" things on FB, Blogger, and the numerous other sites we "belong" to. It reminds me of all of the stores I frequent here in my home town. About the time you learn how to use your markets check out debit system,  they bring in one that is "better, bigger, more secure" and also confuses the hell out of me. Then you run over to your pharmacy, same thing, now they handle the entire way you check out totally different. Now try to go shopping two or three department stores! Everyone one of them, either has a new "card" for you to sign up and and get 20% discount. Yes, the first time, and then after that, all you get an email box full of junk from them daily. Then they have all of these mark-downs with an "extra 20% off" at the register, and you either have your calculator out, they might be nice and have a "chart" up on the rack telling you what the cost will be after the "extra" is taken off at the register. Anyway, when you are already dealing in trying to keep your sanity with a brain fog that seems to only be getting worse each week; the lists that have now become the lists of lists you need to take care of and LORD forbid I not forget something for someone, a doctors appointment, or even something as trivial as getting "change for the coke machine, or picking up a drink, some kind of soda that if I don't, no one else would think about how thirsty I get when I am having to drive anywhere, and in fact I cannot walk through a huge store like a Wally World's, unless I stop by a front counter and pick up a drink to sip on while I shop.                                                                                                                 

I've been telling this now for awhile to my family and friends. Not only had my physical  issues change, I seem to have slowed down to a crawl at times. My brain cannot function, I feel it takes me forever to get ready, then I look down and there is always something else that needed to be done, or I forgot to put on "the list" .... heck even times I do well to remember the name of a room, or the name of what is in that room! Store names, my own phone number, it seems that may "brain fog" add          


I thought I would post this on FB at first, then changed my mind. I is a combination of several days posts, I began days ago. I changed my mind and want to put it here first, then really tell about these feelings I have on my blog; then share them that way. I will put this on my blog, but it has been on my mind now since I went to Winstar last weekend with my Mom. As most of you know, due to all of my extensive sharing, I LOST ALL of my Teeth to Sjögren's within a year. It sounds almost impossible, and I know from everything I've read and been told, that they "damage" that could not been seen probably had been going on since I was first diagnosed with Lupus, Sjögren's, Raynauds, RA... and who knows what else. That was back in about 2009-10 when the very first real "blood work" was done, and the doctor took ALL of my years of symptoms seriously to put them together. When he did, I was sent immediately to a Rheumatologist. This gentleman, a Rheumatologist no doubt for many, many years, still even used "gold injections" on occasion on patients. But, he was far from a dummy, and further he end  around the corner there in his office to have blood drawn, urine and he did even a more extensive workup on me. But even that first day, just by an examination of my toes, fingers, wrists, thumbs, feet... he "felt" and the saw the damage. He also saw that I had Raynaud's immediately, and I had an "hyper-extension of many of my joints, almost like being double jointed. Even after that first visit, I was so upset that it had probably been going on for years and years.. my Xrays showed my toes and finger joints being bad already, so none of this happened over night, and not one doctor until my new PCP at the time, could ever put ALL of my symptoms together. It was somewhat almost a relief, yet it also very scary also, No telling what had really come of "damage" not detected since it might have been years this was going on, yet no one could explain the severe migraines, the extreme tiredness, the not being able to "multi-task" as I once could, having just about every joint either already been injected or had surgery or even been totally replaced before the age of 50! No one could truly explain how someone, like myself, a very fit woman, (walked, ate properly, exercised daily, kept my weight down, and yet I had a heart attack at 40 years old and another at 50! Nothing made sense, yet no doctor could put it all together either.. what made my new PCP at the time think "autoimmune issues" I don't know... Maybe a conversation I had with him about me thinking I had "Lupus". Anyway something finally "clicked"... thus here I am today, far into the realms of autoimmune illnesses... and the latest issues the Sjögren's... so here I am now 54 (since Feb 15th) ! battling a battle I thought I would never have... losing my teeth and having dentures... and won't hold until the "mini implants can go in, which will be another 60 days or more. I am not going to lie They are a pain in the butt, or mouth I guess. They seem odd, too much "junk" in your mouth, a pain to have to clean, then put in each morning, then have to brush them, clean my mouth and put them in, then out they come at night... you cannot sleep in them. And eating in them for now is almost impossible. Even my "bite" pattern is completely different, which I am thrilled about, because they are "pretty and I wanted pretty teeth all my life, just never realized they would have to be "fake" and not my real ones. But, I honestly felt like once I got these new teeth in they would "fill in" where I had lost many teeth, which in turn would fill out my lips more, my bottom cheeks and lines around my mouth. I was hoping to "see" a bit different maybe even more youthful (by a few years) me.... but guess what? Nope.... did not make that change nearly as much as that as I had so hoped it would. I just was so disappointed, because I did not realize with the scars from the accident years ago, and the two small scars from my fall right around my mouth. I keep thinking, well, like any other woman, there has to be a way to "tighten" up that skin, or "bleach" out those darkened scars. I even went so far as to  begin looking today and am going to research some of these new facial creams out on the market to see which ones really work, and which ones charge a fortune, yet do nothing. I come more and more to realize I must take even better care of my skin. I have always pretty well used the proper things on my face and skin, lotions, I always take my makeup off at night, allow my skin to breathe and so forth. But, I pray quitting smoking will also reduce some of those lines around mouth. I see elderly women who probably smoked all their lives, and they have all of these deep seeded wrinkles around their mouth, and I always said I never wanted to do look that. But, dammit, when the teeth are out, I somewhat do and it upsets and embarrasses me to have anyone see what it truly looks like. I know we all age, some of us more gracefully than others... and depending on how well we have taken care of our bodies, minds and spirits makes a huge difference in the way you look as you age.

So does having these illnesses like Lupus, RA, Sjogren's age us faster? In all ways, in some ways.... what do you think????? I want to know how you feel about the subject and how many of you really take great care of the hair, skin, nails, including your face? If so, how and do you feel it is making a difference??