I'm Kind of Out OF it these past couple of days...

Sorry gals and guys. I have been in kind of a "funky" mood, state of mind, whatever you want to call it this past couple of days. It's not any "one" thing I can put my finger on, just a lot of little things here and there that I have kind of had to "mull over" and have reminders of awesome stuff, like my Tazzy, and then "not so great stuff" that I will not even mention... plus some of my family have been having "stuff" in life go on also, so I am concerned for them, and for Mom, and what the outcome will be on her visit Monday to the doctor. She has not felt "well" again now all week long... and I realize she is 80 years old, BUT, it is "not just age". Up until about 7 or 8 months ago, she had some issues, but nothing like I see now daily... she called me early this morning to ask me if I was "having surgery today"???? I told her Mom you know I just saw my Heart doctor yesterday and we have put off the "neck" surgery till the first part of March, and I do not even have a date yet.... and how she could "think" with no one "taking me", and me not saying a word, even yesterday when I went by... but those are just the things that tell me it is much more than just "age related".... anyway, I just have not even been able to post on my blog, which is unusual for me... I think I am just also worn out... I had been "running" since last week Before we went to the Casino last Thursday and then this week I have had stuff all week long I needed to do, catch up on etc... so I think I am just tired and probably need to take a break... and allow my mind to catch up with my body LOL! Have a good Friday everyone tomorrow... and hopefully by Saturday I will feel more like getting into posting etc... after over $130.00 YESTERDAY between MY CO-PAY AT THE DOCTOR, THEN THE CAR INSPECTION AND THEN I CAME HOME AND REGISTERED THE DAMNED THING ONLINE, AND ALL OF THAT WAS 135.00 JUST YESTERDAY!!!! INSANITY!!! Rhia

Thank You for the "Happy Birthday"!

Since some of you may not be on Facebook, I wanted to tell you "Thank You" for all of the Happy Birthdays!

It is so wonderful to have my "extended" online family here, on FB and so forth! You guys and gals really make me feel great when the days that I feel "not so great" come along!


So, I post a "Happy Birthday" and "Thank You" Graphic for ALL of you!

I hope from this day forward to give you many more very good posts, articles and information on all types of health issues, and especially those related to these autoimmune illnesses that plague so many of us.


Much Love and Thank you to ALL who read and follow!

Rhia

Happy Valentine's Day to All!

Wishing you and yours a Wonderful and Happy Valentine's Day! Enjoy the love that surrounds you, whether by family, friends, that special someone, or just loving yourself! Hugs to All, Rhia

Dealing with an Elderly Parent who also appears to have either Demenia or Alzheimer's when YOU are in Chronic Pain and have Chronic Illnesses.....

I took my Mom, (we have not been in almost a year due to both her and I being ill, so this was supposed to be an incredible trip!

Mom has been showing so MANY signs of either Dementia or Alzheimer's now for 2 years or so to me. Yet, the last 6 months have gotten terrible. I could write a book on just what I have been through due to her "diminishing" ability to "think, not be confused, not to almost burn the house down, to not be able to pay her bills, or even read her mail" and the list goes on and on... and remember I AM ALONE NOW, I AM CHRONICALLY ILL WITH SEVERAL AUTOIMMUNE ILLNESSES MYSELF, AND LIVE WITH HORRIBLE CHRONIC PAIN... so to have to also deal with some of these things with her some days is more than I can handle almost...

So, this is a bit about our overnight trip to the Casino at Winstar in OK....

(From Friday evening after getting home)
TOO WORN OUT, TO EXPLAIN all the HELL at the Casino the past two days, but yesterday ALL OF THE MACHINES WERE DOWN MOST OF THE DAY! TODAY MOM LOST ANOTHER credit card! I JUST HAD TO CALL ONE IN LAST WEEK SHE LOST here in town. So, today, she "discovers" she lost another one! Then she misplaced her cane about 10 TIMES at least... other than that, and HORRID nightmare traffic going especially but coming back also ROAD CONSTRUCTION EVERYWHERE!!! But, other that those things all in all, it was a GOOD TWO DAYS!!!! LOL!!! Oh and my kitchen was still standing when I got home. LOL... The pups were in the kitchen with their quilts, food, blankets, toys, water, etc... and actually I still had a house standing.... LOL!!!! More over the weekend, I am totally wiped OUT! But, I came home with only 20.00 LESS THAN what I went with... so I guess that is a good thing .....

(Today Saturday morning I continue)  .......
Those issues, and that we had not really gotten to play much at all on Thursday, (can you imagine how much money the Casino lost?) Their "main server" went down for some weird reason that does everything for all of the slot machines! In fact I sat down and played, and was going to switch machines, and it would not print me a ticket with my money on it... so then I began to notice ALL of the machines were "blinking" and people we saying the same thing I did!!!! So they really had one heck of a mess. And of course the day we decide to go of all times!!!!! I am so totally worn out today thought... Mom "lost" can her cane 5 times. Once I had to go and ask about it. And "lost and found" brought it to me, someone had turned it in... the other times "I" finally found it, once she could try and recall which machines she had been at. It was a nightmare... then when she found out her credit card was GONE... I just went nuts almost. Thank Goodness it was a "credit" card and not a debit card for her checking account. They may have been much worse. I had to get home first, find an old statement of hers, so I could even find where to call to cancel it... and then bring her information home and call them. Then she could not decide to eat at the Casino (we did not eat breakfast at first like usual) and just played thinking we would play an hour or two, then eat and leave. This was like 6:30AM or so... so by about 10AM, even I started getting hungry. The night before she would not even eat down in the Casino like we usually do. She wanted to get something and take it to the room... which was fine with me, but just weird. We went up "early" about 7:00PM to the room, and had gotten some really good fish and fries, much, much more than either of us could eat... we should have ordered just one and split it. So, I turned on the TV and was watching a movie... the next thing I know she is in the bed, with the extra blanket, already asleep by about 8:30PM or so. I could not believe it, and she never woke up at all, and usually she is up and down several times a night.. I finally decided to lay down also, so I changed and got in bed, and I woke up by 5AM on Friday and HOPED the slot machines were okay... But. I was already drinking a cup of coffee, I had made their in the room (which sucks) but I needed something... and was almost dressed by the time she was up moving, ready and packing. Like I said it was just strange everything she did. Heck, when we were going to the Casino, she sat and spent like an hour almost going back and forth through her purse. I thought maybe she lost something... but she was just "confused" I think about everything... then she kept saying we should be there already, and I said YES, if we had not been in stop and go traffic for about 35 or 40 miles or more off and on, we would have been there in about 2 hours... it took almost 3 and a half or more hours to just get there this time! Anyway, I parked and again she began going through her purse, and taking stuff in and out... and I finally asked her Mom have you forgotten something? She just said I cannot get it all organized, and then she had her "Players club card" in her hand, or lap and started saying she "lost it"... I looked down and said Mom it is right there in your lap..... anyway, I knew then it was not going to be a incredibly exciting trip... and one time about 2PM on Thursday, I told her to "SIT" and do NOT move from a certain spot... I was headed to get some tea, and go to the restroom, which was a long ways down, and then I told her I was going to try and check in to the room... so DO NOT MOVE! I get back and she is GONE! So, I thought gosh knows where the hell she is now... so I started looking, and finally spotted her rambling around, and I said WHY DID you MOVE??? She said well you were taking a long time... and I said I TOLD YOU, it is a MILE almost to walk from where we were to the HOTEL to check in! So, yes by the time I got there, got something to drink and went to the restroom it took a while, but why the hell you did not STAY where i said to... and she just looked at me... LOL! Anyway, it was okay and I had a wonderful time JUST BEING AWAY FOR A DAY OR SO AND A NIGHT, from the house, dogs, and just "Life".. BUT, I FEEL Mom will not be going back there again... if we do go to one, we may have to go to one of the smaller ones, who has already grown huge also... but she even said it, I just don't think I can go through this again, OR put YOU through all of it... and I told her Mom, it is fine, I did not mind and We BOTH needed to be away for a day and night... I told her I have my OFF days also... BUT now she really sees what I have been seeing for several years, and really bad the past 6 months... she goes to our PCP on the 22nd, and I am going to have a huge discussion with him... this is not just "old age", this is definitely more than that... I just PRAY it is not Alzheimer's.... Dementia is severe and bad enough, but the other, I watched my Grandfather go through that, and I surely do NOT want anyone to have to deal with Alzheimer's it is a horrid illness for sure..

Happy Valentine's Day! to All! I wish everyone a Day of Reflection, of Love of Yourself, and of someone else, if there is another love in your life...

As the "day of Valentine's comes Around, no matter Well, Sick, or Somewhere in the Middle, we either have a Love of Our Life, Or Maybe wishing for that love or find ourselves in a place of not being sure. 

Whether anyone is "separate" from you and you find love there, "ALWAYS REMEMBER TO LOVE YOURSELF FIRST"!

We all too often especially those of us with Chronic Illnesses and Pain think we are "not lovable", but that is just not true. Love can come in so many, many different ways... yet to find you love yourself, shall bring love to your life, whether friends, family, or that special someone, you are truly Special.

I wish each of you a very special Valentine's Day! 

And thank each of you for coming to my blog and "supporting" me by reading my blog, and hopefully learning something at times also....

Rhia

I know It has been a couple of days.... from HELL! Life in the not so fast lane, as I plan to go to the Casino BY MYSELF ON THURSDAY! SHHHH! No Ones knows yet. :)

My Birthday is the 15th, and I am sick and tired of being at home, running errands, going to doctors, taking care of this, that and the other, and not getting a break, SO I MADE A RESERVATION (COMP ROOM0 Overnight at the Casino for Thursday night... could not get the 14th of course due to Valentine's Day and President's Day on the 15th....

Anyway, it has been one helluva weekend, Mom's phone has been OUT since last Thursday and it was the PHONE COMPANY'S FAULT and they did not fix it until ABOUT AN HOUR OR LESS AGO!!!! So, here she is 81 years old without a phone all weekend, well 5 days at least, so guess who had to go check on her everyday all weekend, and that is just the half of it.

I face my neck cervical possibly on Feb 18th, which is about the time I hoped for... right after my birthday!


Here are a few new pics of the fur-kids... the older one Bubba does NOT LIKE sweaters, even though he is so cold all the time, so it was a bit of a chore to put his on.,

I thought I would share a few with you....

So Much Going On and Not Feeling Like Dealing or Coping - Life with Invisible Illnesses, Communication with Family, Friends, & Daily Living

I realize i have not posted in a couple of days. I feel badly about that. I know without new material, new posts, new information, that my audience gets "bored" with my blog.. mmm, new name 'Bored With My Blog?" Just a pun there, a spin on words.

Portions of me have been in a strange state of mind. I have many decisions to make for the upcoming couple of months, and since I am not feeling the best, albeit many do not know that, I've found myself wandering both physically and mentally around like a lost soul in a vast desert, seeing nothing but sand in each direction... the grains gritty, my thirst parched, and longing for a "drink" of sanity that will point me in the direction of an oasis of decisions.


I am having to deal with deciding when to have my cervical neck surgery. I opted for right after my birthday which is the 15th! Yes, almost a Valentine's Baby, so guess who gets flowers, cute stuffed animals, candy and the like a day "after" Valentines Day? In a way, it is nice, because I usually get more simply because much of it is marked down by 50%!

So, after two calls over a weeks time to my orthopedic surgeons assistant, she finally calls me yesterday. My surgery is tentatively set for Feb 18th. So, it may or may not be on that exact day, depending on what they get set up.

Things have been so crazy here, between my Mom's health issues, and running her back and forth to the doctors, plus my own problems that for months and months I dealt with just to get 'well enough" to have surgery. Thank goodness, I believe the abscesses have healed finally. And my pain pump surgery is over, and my new one is in place.

But, the invisibility of these illnesses, does NOT mean we can just say "okay, i just don't feel good, I am not going to the market, paying bills, taking the pups to the Vet, cleaning house, washing the car, taking out the trash, cooking, cleaning... not when it is just YOU, and your two fur-kids! And "they" are surely NOT going to run to the market, or run errands and clean house! :) Although at times I sure wished they could.

So, I trudge on, day comes, things need to be done, and then evening comes, I fix dinner, have to clean up afterwards, and then on the sofa for a movie, and here lately I seem to be ready to sleep much earlier than usual. Last night all three of us, myself, Bub's and the newest addition "Peanut"... well less the nuts, since he was just neutered! LOL! Yes, maybe a bad pun, but I still thought it was too funny not to say... "Sometimes Peanut acts and feels like a nut, sometimes he don't, Peanut, used to have his nuts, now he don't" - Okay the story behind that is with each pup over the past 15 years or so, that I get, I find some new little "tune" that becomes their song... and I sing it to them every once in a while... and bless their hearts, Tazzy, even though she has passed away, and I miss her so much, Bub's that is getting up older now and having his own issues with hip problems, and arthritis, and of course the new "Holy Terrier" Peanut, now each have their songs....

These past two days have been very difficult for me, in every way. I have not felt well, nothing I can put a finger on, just overwhelmed with fatigue, no energy, pain always pain, and just a general feeling that I have of not feeling like myself... even in a mental way.... foggy, and not wanting to deal with daily life.

I felt I would just pop down on the sofa yesterday and not do anything, yet it was trash day, of course I had to feed the dogs, water them, change their paper, straighten up the house, and I was COLD all day long. I rarely have those days, but I could NOT get warm... no matter how I tried, or what I did, I was COLD! And it was cold ALL Day Long! No Matter what I did I could not warm up. Finally, about 4PM, I took a hot shower, and after that I kept pretty warm... today it is a cold morning, but hopefully the sun is out and it will warm up. Our issues here are the wind makes it colder also these past few days.

Again, though this morning, I wake up, not honestly wanting to do anything. I am still just worn out like I have ran a marathon that was 20 miles or more... and my body is trying to recuperate. Yet, if I were to get dressed and go to town to some of our store's, NO ONE would know the difference. They would not "tell" that I am totally wiped out, and unless my brain fog causes me to do something silly in the store, the "invisible" part of Lupus, RA, Chronic Pain, and so much more, are difficult to explain. I feel guilty if I am NOT up and doing things. But, I feel lousy when I have to make myself get up and do things...

I think people tend to see me as lazy, or lack of want to, or whatever. And I do that to myself also. I want to think that I am just being lazy, if I sit down and not move forward with all I need to move forward with.


There is lots going on with my Mom, that has been quite concerned. I had seen the signs of Dementia or worse, Alzheimer's in her now for over 2 years... little by little, but now with these new symptoms, and worsening signs, of forgetfulness, loss of time, loss of what day it is, shuffling her feet, rather than picking them up and walking, loss of much weight, and having issues even getting her to eat, and being just overly concerned about her "bodily functions".... and talking about those day after day... forgetting checks in bills, not understanding no matter how plainly I have it typed out, how to take her medications, she cannot "get it"... losing her credit card earlier this week, she just has so many numbers of things that point to some of one of these illnesses... there is lots more, leaving a pot on the stove until it burned.... Those things are also wearing me down. I need to make a decision on where to go and take her for testing, and how to go about handling that, along with my own issues of needing surgery, that is very important to my own well being.


There are some person issues I am dealing with also. I have a friend that wants to do a "video chat" possibly once a week. Which is a cool idea, and we would make it, send it to the other, like that. Yet, for me, I never know when I will be "dressed" enough to make a chat, and what I will have to say... there maybe lots to say, like sometimes when I email, and then there maybe times, that things are just the same old thing... I guess I will have to pick a day, I go to run errands, that is when I am usually dressed and have my makeup on etc... and make a list of the things I want to say... like I said it's a great idea, and I want to do it, but for me, it maybe something that takes me a bit more "getting ready for" than for some.

I have felt that these "invisible illnesses" as of lately, have caused ME to be "invisible". I feel as if others to do SEE ME, or HEAR ME... that I am "not be heard as to what I am trying to get over to them. This is meaning friends, doctors, family, everyone. I sometimes feel as if I need to go on top of my roof and shout dammit LISTEN! What I have to say is important!

I realize whether ill or not ill, those moment arise, and give us this innate feeling that no one really values our opinions, our feelings, and what WE think in the world...

Stress, too busy being busy, too many hours of running here, there and yonder... attempting to be ALL to ALL... and it is impossible for anyone just about, but especially those who are chronically ill.

I TRULY FEEL that if I DO NOT MAKE MYSELF get UP each morning, MAKE MYSELF feed the dogs, water them, fix me some hot tea, or fat free hot chocolate, take out the trash, and do my "daily things" then I would NOT get up at all.... I have to "force" myself at times to cook something more nutricious rather than eating whatever is the quickest. It may mean making it ahead earlier in the day, so I do not have to try and make it later, when I am getting too tired in the evening to do much cooking. And I believe since many of us, like myself take so MANY daily medications, it changes our tastes in foods, our appetites, and things I used to LOVE to eat, I no longer can even stand the thought of.

I also know for a fact, once the Sjogren's took all of my teeth from me, and I had to deal with a full set of dentures, THEY have definitely had a dramatic effect on the taste of food. I either can't taste it, or it tastes totally different than before, an even though I may not put them in, and try to eat dinner, the food just does not have the same flavor as it did, before that horrid illness took every tooth in my mouth away.

So, not only the illnesses, but change your taste, along with the medications... all of it combined, can have a definite change on your entire system...


I laugh at myself because I also want strange things, like cravings...something salty is one of them... also I may "think" I want something so badly, yet once I get it, or fix it, I just cannot fathom eating it at that moment! Now the next day, it may totally change, but once I have cooked it, often I really prefer not to eat it.

I find myself lately not wanting to communicate with anyone.. I don't feel like saying much on the phone, in person, online, in emails... and I'm not sure why. Maybe it is due to I feel as if I am telling the same old stuff over and over again. Or that I think I am whining and griping if someone asks me how I am doing, or feeling,


I know I am READY FOR WARMER WEATHER, even though I know we need some COLD weather to drive away fleas, fire ants, and other pests... that will be driving us all nuts if we don't have enough cold to get rid of them... I have already put out one round of granules for all of those pests. I know with this strange weather, we could see flea's , fire ants will run rampant, along with all of the other large number of pests we deal with in TX every spring and summer.


Those are other things that no matter how lousy you feel, especially if you don't have anyone else to help out. I even completely overhauled my lawn mower last year. Yet, I don't have the strength in my arms to pull the rope hard enough to start it... hopefully my neighbor will help. He used to be really good about mowing my lawn... but he began to act odd last summer, in fact him and his entire family kind of shunned me for some reason, so I HOPE he still intends on helping with the lawn, or at the least doing the mowing.       


So, as the story of my life goes, in the middle of this, I have to go over to Mom's. Her hone had been "busy" since yesterday evening, and I thought she had probably left it on as she does sometimes... well this morning by 10AM it was still not working, so I had to dress and go over. To find out, it is NOT working, and she did not even know it. So, I had called her Wednesday evening, and Lord knows when it stopped. I tried everything, and none of the stuff in the house appeared to be an issue. I looked out in the box on the house, and I think they have a wire they never replaced, and it appeared to be possibly frayed or causing the problem. So, I had to call the phone company, put in a work order, and be told they cannot do anything until MONDAY... so now she is without a phone, and as I told her, if she had something come up, take my numbers to her neighbors, she has several or call 911 if it is an emergency... and that I would check on her over the weekend... then she tells me that she fell in the front yard this week on the way back from the mailbox... she again is NOT taking her medications correctly, and I am sure that is part of the problem... so she said she needed a "walker"... the cane was not working well... partially because she does not use it enough, and does not take it where she needs it, and said that is why she is not going to church... so I go, buy a walker, take a bunch of magazines, a piece of cake, some newspapers for her, plus an updated medication list... and I ring the doorbell twice, and knock and she does not answer... so again, probably in bed... where she stays too much lately... so I LEAVE A NOTE, IN THE MAILBOX, AND UNDER THE FRONT STORM DOOR, and tell her stuff is on the back porch including her mail... of course I cannot call, due to the phone issue, but I will go over again tomorrow... I am not going back again tonight, I have once again spent most of my day on her stuff... which is fine, but it leaves me NOT finishing my post, and I am tired now after running around all day....

So, I close this with... INVISIBLE ILLNESSES SUCK... and THEY MAKE YOU TIRED, AND PISSED OFF, AND RUIN YOUR PLANS... and on and on.... and no matter how much you fight them, and life, they tend to get the best of most of us.....

                           

#TheRealRD Rheumatoid Arthritis Rare Remission - Daily Pain and Suffering

#TheRealRD #7 - Remission is Rare and Daily Suffering Is NOT!


As I read over the 7 ideas that the #TheRealRD asked for bloggers to blog about for RA Awareness Day, which is on February 2nd, and also happens to be Groundhog Day, and was my Dads Birthday, yet he passed away 10 years ago.

Ive come to know and understand the true chances of myself, and thousands of others out there like me, who suffer from this Autoimmune Illness, have MUCH pain, sometimes daily, and we KNOW all too often no amount of medications our Rheumatologists give us, the pain, the stiffness, the swelling, the lack of use of that particular part of your body like your hands and wrists become a severe problem. Take someone like myself that is a published author, and avid blogger, trying to set at the computer daily, for often hours at a time, if you intend on keeping a blog up to date, and writing a 3rd book, I must be at the computer.

Yet, daily pain keeps me from making my goals, that I had set even two years ago. So, when I saw this opportunity to write a blog post in honor of February 2nd, RA Awareness Day, by the Rheumatoid Patient Foundation (RFP), I am thrilled for the opportunity.

Honestly, and I am sure many of us could write about all seven of the topics. I have been through so many different medications and combinations, that either did not work, or caused severe other health problems, mainly all types of infections. I feel we do NOT have nearly enough research funds to get to the root of this hideous life altering disease. I also know so MANY others may not know that RA can effect all different types of organs in the body, from the heart, causing the heart attack number to DOUBLE for those with RA. It effects the joints, and usually many joints. Feet, toes, fingers, wrists, thumbs, the spine, the liver, lungs... It is a systemic disease, of which can harm any and/or various other vital organs of the body.

The daily pain is what many do not often understand though. Those who do not know the treatments, may not realize just because we are on medications, that does not mean, that all that often the pain subsides. I spoke with a member of my Rheumatologist staff two weeks ago, and when I explained to her the amount of pain I live with was high on the 1 to 10 score, she looked at me and said that is NOT Acceptable! No one should live most of their daily lives in that much pain!

After speaking with her it dawned on me that I DO accept an unacceptable amount of pain most days of my life. I have gotten to the place I think this is just how it is, I WILL have to just LEARN to ACCEPT that on a scale from 1 to 10, pain at an average of 4 will have to do, which is so WRONG! A level daily of 4 for most people not used to chronic pain would be excruciating! And it is not right for me to have to deal with ongoing pain of that magnitude day in and day out, yet what do I, or WE do about it?

I have a great Pain Management Doctor, who has implanted my pain pump, and will up the dosage as I need it, plus he gives me oral medication for breakthrough pain. Yet, I feel that is part of the problem. I have TOO MUCH breakthrough pain, on almost a daily basis.

MANY of US as Chronic Pain Patients, whether from RA, Lupus, other bone and joint problems, spine and back issues, severe nerve pain in different regions of the body, for many reasons, from diabetic nerve pain, to nerve pain and other types of chronic pain, that even our doctors do not know WHY it is there or sometimes even HOW to treat it properly - we are told that WE MUST LEARN TO COPE with a CERTAIN AMOUNT OF PAIN! It is not that I do not agree with that, I do. NO MEDICATION will take away ALL of the pain. YET, with the proper treatments, diagnosis, sometimes surgeries, some combination of medications, certain types of exercise, some diet changes, and some natural types of therapy pain can be diminished much better. IT IS FINDING that right combination of all of those or part of those things that can give us that type of relief, BUT it make take weeks, months, even years to get that all adjusted and working. There is NO ONE treatment, or magic pill, to just take and chronic pain subside for good.

All too often I feel that RA is a very misunderstood disease. Even though we have LOADS of information about medications, ads on the television, and in magazines, I feel that as a society those that are not patients, caretakers, or close to someone with this horrid disease do not fully understand what it can do. It as not as simple as taking an NSAID over the counter, or even taking one medication that is a prescription. At times, some of us DO fine the correct medication, or combination of medications and find relief. Yet, those that do, are far and few between.

I have been through an entire gamut of all types of medications for RA and Lupus. In fact, I just saw my NP from my Rheumatologists office 2 weeks ago. As we spoke about my pain, the daily swelling, stiffness, I am losing more of my grip in both hands, the weakness, losing the ability to do everyday things, buttoning a shirt, or even zipping a zipper... I have watched my body especially my hands, wrists, fingers, thumbs are very bad, feet, ankles and now my spine begin to degenerate even more than ever before due to RA.  She made a remark that upset me when she said, that I had tried all kinds of medications and none of them seem to work. What upset me about it so much, it was like she was blaming ME for medications not working! Some of them caused too high of infections in me. I had double pneumonia at least twice, then had cellulitis in both thighs, that then turned into double abscesses, that took 4 or 5  MONTHS to get well. I had to make a weekly trip 35 miles ONE WAY for weeks and weeks to a Wound Care Specialist in order to HEAL those abscesses! It delayed me in having a cervical neck surgery I needed badly, as well as my internal pain pump had a permanent motor stall, and I needed surgery to replace it! But not one surgeon would touch me until those abscesses were basically well, and I was free of infection.

So I spent months without most of my RA medications, plus a couple of months without my pain pump working, and suffered endless weeks of having to have wounds the size of a silver dollar and as deep as half my thumb getting debrided until they finally got well. Our pain is NOT just as simple as from a joint. It is not as simple as taking one pill. There are so many medications, yet like myself, daily, I am in pain. Especially for the 1st few hours of the morning. As joints start to be effected MORE by this disease, then the pain can become almost unbearable, and at times, even in my lumbar spine, I have enough degeneration from this hideous illness, that it hurts so badly, I cannot even sit to type, to write, or often not be able to have the quality of life I so want to have.

Honestly, I cannot recall unless maybe a very rare occurrence that I have read or heard one person tell me, I am in remission, and I have finally no pain from Rheumatoid Arthritis. I do not believe the cases are out there, and if they are, very, very rarely do they happen.

When I saw the article about raising awareness on February 2nd by the Rheumatoid Patient Foundation, and that I could participate, and tell my feelings on 1 of 7 subjects, I wanted to tell my feelings, and story, because awareness is something we so desperately need so much more of.

#TheRealRD

You too can learn so much more at ...

www.rheum4us.org

Blog Post for Feb 2nd For Rheumatoid Arthritis Day!

The Rheumatoid Patient Foundation

has given us bloggers, or those who would like to post 7 topics to pick from to post about for National Rheumatoid Arthritis Day! I had picked the 7th one and am working on my blog post now. But I wanted share to these with you and the article in case you would like post post or blog about it!

 This began in 2013, and done so well, they decided to make it an annual event! I am proud and honored to put a blog post in. Of course for me many of these subjects ring like a bell in the night over things I, myself have been through and I am sure so they do for you. Be sure to include the hashtag ---

#TheRealRD in your posts!

Those are many great topics to blog about ad gives e an idea about where some of my blogging may go this year when it comes to RA!

 

To find out more details about how you can either submit a blog post or even send your thoughts in, see their website at---

http://rheum4us.org/rheumatoid-awareness-day-2016-the-real-rheumatoid-disease/

Hallucination, Premontion, Trying to Help My Mom Understand an ODD Happening... sometimes we just do not totally understand odd things....

Okay, I have a very odd situation going on with my Mom. I called her yesterday evening about 7PM or so, and she was crying. It scared me to death, thinking something was really very wrong, and then I was upset she had not called me. So, she starts out telling me that my (sister in law) Madeline, who has not spoken to any of us since my Dads funeral in 2005. My step brother Larry, and her were at the funeral home I guess they day they were picking out the casket, and so forth. I had not made it in yet from Seattle, so I was not there to know what happened exactly. 

But, from what Mom said, Madeline (who honestly always acted like we were trash, and not good enough since we did not live in a huge fine fancy home and so forth) is was born and raised in England, and had a little girl Karen who was just about 3 years younger than me. 

Anyway, I could make that a long story, but anyway, something came up at the funeral that Larry asked my Mom about some (insurance policy) that I guess my Dad had many, many years back, and he had probably used it for his burial, so it was no longer there. But Madeline must have stuck her nose in the middle of it, and began asking I guess about that policy, the money on it, and felt it (belonged) I guess to Larry and her! Well, Mom was already in a state of shock, as to how my Dad died so suddenly from a knee replacement that went very wrong... and to this day we are not really sure exactly what happened to cause him to die... but after whatever words transpired, Larry and her would NOT speak to ANY OF US! 

Not Mom, not my two kids who were there, and NOT ME! And I had nothing to do with this, and did not even know it had happened.. so I was totally in the dark as to why they ignored me at Dads funeral, and then at the meal afterwards... and finally I was told that there had been words at the funeral home, before I even arrived.... well, I only know what I have been told... BUT they have not TALKED TO ANY OF US, NOT CALLED, NOT CAME BY TO CHECK ON MOM... AND she helped to raise Larry, as a teenager, and then he stayed at the house even after I was born, and he was there until I was about 4, then he enlisted into the Air Force... he was stationed in England a couple of different times, thus that is where he met his wife Madeline, and finally adopted Karen the daughter... Okay so there is the background a bit... so night before last, Mom said she was in bed, but just got in the bed and was fully awake, and she heard footsteps coming down the hall. Madeline always wore high heels, no matter what, and always was dressed to the (Nines) when they visited, which she rarely would come... anyway, Mom said she sat up, and Madeline was standing at the bedroom doorway, dressed in black, and she is already tall, and in heels she was very tall... and that she began to ask my Mom (Henri (Moms full name is Henrietta, can I come and stay with you?) 

Mom said her voice sounded extremely distraught, and that Mom even tried to speak to her... now at the time I thought Madeline REALLY came there, from how Mom put this to me... so I even asked, how did she get in the house, did you leave a door unlocked, because with screens and doors locked, no way anyone could get in... and then Mom began to tell me, she never said anything, else, and after about 10 minutes, suddenly vanished.... om put this to me... so I even asked, how did she get in the house, did you leave a door unlocked, because with screens and doors locked, no way anyone could get in... and then Mom began to tell me, she never said anything, else, and after about 10 minutes, suddenly vanished.... Now my Mom, along with myself, and both of my kids, have always had this (6th sense) or whatever you want to call it, about knowing when something is wrong, or having a feeling, or I have vivid dreams... in fact I have very bad night terrors, they are better now, but had been very very upsetting... anyway, Mom did not really recall the whole thing until yesterday evening, and then she began thinking about what had happened and was extremely upset that something (bad) had happened, or was going to... 

I finally figured out this was some type of hallucination, or some kind of dream state, but Mom insisted she was wide awake... but it truly upset her, yet she did not call me... and she said i am not even sure why I did not call you... I was so worried.... Anyway, I tried not to make more of this with Mom, not wanting to make her more upset over it, especially late in the evening... so I have been trying to do some research today, to find out about hallucinations, something this vivid, because of course I had been concerned Mom has signs of Dementia or Alzheimers, in which I know for a fact in some cases they have delusions, or Hallucinations, and so forth... but I also have tried to find my step brothers phone number, email or something, so maybe I need to call them... what I did tell Mom is often whatever it appeared to be about, may not be something bad... as I told her, since it was at Dads Funeral 10 years ago, almost 11, that maybe why she was dressed in black, and possibly they are talking about trying to reconcile the situation, knowing they acted stupid, and should have never (cut) any of us out of their lives... so maybe it was a message of almost apology... or that it could mean anything or nothing... it just happened and that is that... 

BUT, I know Mom is still concerned, so I am not sure just how to handle this... she was much better after talking to me about it last night... so I know just telling it helped her to better understand, that it can happen and not mean a thing... yet these things can means physical issues... when I ran such a high fever last time with double pneumonia, I was Hallucinating in the broad daylight, walking around my home talking and hearing voices, that were not here, thus I finally thought to take my temperature, and it was 103... thus was causing me to have hallucinations... she has not been well, she is in pain still some with her back, she is already upset over lots of things, her nutritional level is not good and she is lacking in several vitamins, after all of the weight loss.... so even just the stress of all of that could have something to do with it.... anyway, any of you have any ideas, or suggestions? I would appreciate another point of view... LOL, I will say it kind of (freaked) me out and then I felt odd last night before I finally went to sleep....