Showing posts with label RA. Show all posts
Showing posts with label RA. Show all posts

Friday, July 21, 2017

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



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

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

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

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

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

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

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

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


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

https://creakyjoints.org/


https://www.ghlf.org/


https://www.50statenetwork.org/

 

https://arthritispower.org

 


Monday, July 17, 2017

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

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

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

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

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

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

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

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


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


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

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

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

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

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

Sunday, July 2, 2017

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

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

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

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

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

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

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

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

Tuesday, June 6, 2017

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

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

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

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

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

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

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

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

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

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



Tuesday, May 16, 2017

World Autoimmune/Autoinflammatory Arthritis Day

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

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

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

 


 

Wednesday, March 29, 2017

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

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

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

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

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

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

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

Tuesday, March 21, 2017

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

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

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

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

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


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

Thursday, March 16, 2017

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



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


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

Come by, visit and give me your feedback!

Sunday, March 5, 2017

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:
 
 
 
 
 
 


Sunday, February 26, 2017

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

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

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

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

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

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

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

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

Friday, February 24, 2017

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®


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 :)




Sunday, February 12, 2017

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....

Saturday, February 11, 2017

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.....

Friday, February 10, 2017

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


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

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

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

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

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

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


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

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

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

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

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

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

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

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



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


Wednesday, February 1, 2017

Right Foot "diagnoses" and causing much of my stability issues on the right side, answers & hoping I continue to improve... Foot issues, Want the Neck Surgery done) and wanting to get some new RA medication

I went out for a 3rd time myself yesterday, and went to run a couple of errands, then went by Legend Oaks to visit the lady who was in the room with me a part of the time. Bless her heart, she had been in the hospital a couple of times before Christmas with pneumonia, and she has had Diabetes 1 since she was a teenager. 

They were not really keeping it under control, and she was on several different types of insulin shots... and she was in there for a broken pelvis which COULD not be repaired by surgery. So, it takes much longer to heal on its own, when you have nothing there to try and help hold it in place and heal it. So, when I left I knew she would be in a couple more weeks at least. But, she has pneumonia NOW again, and it was bad yesterday when I went to see her. What makes it worse, is the woman they have in there now, I guess had a fractured hip etc... but she was a "chatter box"... had company running in and out, kept interrupting me as I tried to talk with Mary, and Mary looks really bad, she needs IV antibiotics with all she has going on.... I felt so badly for her, so I am going to see if there is anything I could take her with her having Diabetes 1 (and THEY DO NOT have a "diabetic" diet there, I thought that was stupid, with many patients having Diabetes) Anyway, everyone there could not believe how well I was doing... they were so pleased to see that I was back in my jeans, and clothing for town, and without a walker, and in fact, I carry the cane, especially in the stores, but I don't use it much here in the house.

 The main thing making me UNSTABLE is my FOOT AND ANKLE. I was correct, I kept feeling like my hip was very stable but that right foot felt terribly unstable and I was having to watch it almost more than the hip. So, sure enough, I went to a foot and ankle specialist that is in the same office of my orthopedic surgeon that fixed my hip, and I was correct. Due to the severity of the sprain in June on that right ankle, and then I did catch and twist it the morning I fell. That is what made me fall. I've been thinking over that morning, and now I recall that foot "hanging" and when it twisted, that is when I fell so hard to the floor. So, that means torn ligaments/tendons and I am extremely flat-footed. 

I had known that since I was very young. So, between the two, I have that type of "injury" (Posterior Tibial Tendon Dysfunction) or even a "Lisfranc) issue, but without a break so far they do not see any break, but of course my RA/Arthritis I know has a great deal to do with it, because the very 1st Rheumatologist I saw, X-rayed my feet and toes, and my toes "roll under" and are kind of crooked due to the RA. So, he put an "orthotic" in my shoes, to help with the flat feet, then put a steroid injection (WHICH HURT LIKE HELL) into that ankle and foot, and I am going to PT outpatient for a couple of weeks, 2 times a week, to let them teach me some exercises to try and strengthen those tendons and ligaments. I know that ankle has endured two very severe sprains, one when I was 40, then again last year, and before and in between it has always been very "unstable"... and that is exactly what he said, because I told him my hip feels stable, but the foot is what wants to "roll" or not be stable when I walk, which can be another cause for a fall. 

Thus it has to be dealt with... so I am hoping between all of this I see some improvement. I know from others that foot surgery takes weeks and weeks to get over, especially the tendons and ligaments, and you wind up in a "boot" sometimes for months.. last thing I need. I need to see my Rheumy and have my neck surgery first... and pray the foot gets better with this other stuff. 

Friday, January 6, 2017

Fearing...Home...Falling Again...Loss..Bad Blood work...Grieving, and more.... So Many Questions - Looking for Answers

I can't "fuss" too much about the care I've received in both the hospital and now the Rehab Hospital. Thank Goodness, it is NOT anything like a nursing home!

Although they have "long term" patients, there are 4 "Halls" of which each serves a different type of patient. So, those that like myself, are trying to "rehab" so they can go home and be able to care for themselves, we are all in one hall.

The others are for Dementia/Alzheimer's patients, and those that are probably here for the rest of their days.

I really have not encountered much that I would say was "wrong".... I usually get my meds when I ask within a reasonable amount of time, even though there are times, they have patients coming to to be admitted, or things get crazy, and I may have to wait a bit, or remind them. Most of the time, the nurses are apologizing to me, because they were not "prompt" in getting me my pain, muscle relaxers and my diazepam in a timely manner.

I've been able to shower by myself the past two times, and I am getting around MUCH better this past 4 or 5 days. Enough so, I am READY TO GO THE HELL HOME, I am SO BORED WITH IT ALL NOW!

But, complications, like a huge hematoma, at the repair site on my hip, has caused a delay in getting the staples out, my liver functions are all high, and my anemia really was a very huge concern. So far, it appears after the 3 units of blood at the hospital were given to me, my red blood cell counts have gotten better, but I look for them to bottom out again, once I am not here and on the supplements, besides I still feel that I have pernicious anemia, which is an autoimmune illness, plus even the liver issues, probably have to do with Lupus and the RA, causing the issues with my red blood cells being so low.... etc....

I realize I face yet another surgery my neck surgery,if I can recover from the hip fractures (or actually WHEN I recover enough to go and have it done...plus my lower back has to be fixed also....my lower back and neck both were already needing surgery, then between trying to take care of Mom, and now the "jolt" from the fall, both are worse than ever.

ALL OF YOU, PLEASE stay with me!!!! I am certainly NOT giving up on my blog, my advocacy, writing and my other things I participate in so I can HELP OTHERS understand they are NOT alone.....

I am trying to find ways to increase my readers here on my blog, but I know I really need to make sure I have interesting and valuable information here for everyone, or all of you will get bored with it.

IF YOU have any ideas of what you may like to read, hear about, or have me talk about, PLEASE let me know. You can always email me at: ravishingrhia@gmail.com

Saturday, December 31, 2016

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