New Post for Pseudogout, Blood transfusion, Severe Anemia, RA Severe Pain & COVID Virtual Visits & more...

I really have SO MUCH to try & catch up here on, so I am going ton"Post"n some of my ongoing chronic health issues, things about COVID, my 2 unit blood transfusions RA, other meds, so many Lab tests, Virtual Visits and more...

More about my Life Living with RA, Lupus, Pseudo-Gout, Severe Anemia & Making My Home Put Together Alone, through the Pain and all that comes with these illnesses.

As I said day before yesterday I CAN HAVE THE STRANGEST MESS HAPPEN AT MY HOUSE!!! 1ST OF ALL I am so embarrassed to even talk about it..I HAD A "VIRTUAL VISIT SCHEDULED WITH MY RHEUMATOLOGIST AT 2:40PM OR 2:15 PM.. THEY SENT ONE THE 2:40 FROM HIS NURSE AND THE APPT. PART OF THE PORTAL SAID 2:15 OKAY as usual between my dogs up & down and the pain in my back & hips, and hands.. I was UP by 3:30AM yesterday morning...Well, I did several things during the day around the house, did laundry, I have even putting things "more in order" rather than scattered around, for instance al of my hand cleaners & sanitizers.. by the way I DID GET MY 2 CORDLESS NEW BLINDS UPAFTER 3 DAYS OVER THE KITCHEN SINK AND THEY ARE AWESOME!!! ANYWAY, I WENT AHEAD ORDERED 2 MORE FOR THE NORTH SIDE OF MY KITCHEN, SINCE INE OF THOSE WERE FALLING APART & I wanted 2 get them ALL THE SAME! So, those were so much easier than dealing with over the sink and around "rotten light fixture that is another story. I also KNOW I have to put up a new light over the sink, because it is so "rotten" where some of the plastic things are they have cracked, and after 14 years, it is just a mess. I spent some of yesterday trying to find one of those that was NOT $$$ of dollars! I also looked for a few other minor things for the house etc... Also I was HURTING LIKE HECK... THE HUMIDITY WAS HORRIBLE & AFTER UP AND DOWN THAT SNALL LADDER WITH THOSE BLINDS, AND THEN WORKING ON THAT DANGED ROTTEN TREE, THEY WERE AND ARE IN BAD SHAPE...Plus I of course have things around the house I can "work on" .. my HAIR is a mess to say the least and since I had that Virtual APPL. with my RHEUMY yesterday I had tried to do "something with it" Well it was about an hour till the computer visit and more, so I decided to it down with the pups for a few minutes, decide on dinner, then it would be time. NOW the fans are going, the A/C Unit is on and all are LOUD.. I had the TV on.. the dogs were right beside me and of course when I NEED them to BARK they don't.. So suddenly I jumped up & I had DOZED OFF & WASALREADY LATE FOR MY APPT!!!! and of all things it was with DR.Q. HIMSELF, AND I RARELY GET TO SEE HIM! I usually see his PA.. I was headed to the computer & to get the program pulled up and my home phones rings! It is MY DOCTOR!!!!! Plus after the call, I found out he tried 2 TIMES ON MY CELL (BUT IT WAS CHARGING IN THE OFFICE & I COULDN'T HEAR IT & I NEVER HEARD THE HOME PHONE THE 1ST IME HE TRIED EITHER... OMG!!! I WANTED TO CRAWL UNDER THE COMPUTER... I WAS TOTALLY MORTIFIED.. NVER , EVER HAD I DONE THAT.. NOW GET THIS.. HEB AND I WAS TALKING ABOUT MY MEDICAL STUFF ON THE PHONE WHILE I PULLED UP THE VIRTUAL PROGRAM THEY USE AND FINALLY ABOUT THE TIME I CAN EVERYTHING SET UP... MY DOG IS BARKING, BARKING AND MORE... & I KNOW SINCE IT WAS JUST IN THE NEXT ROOM in the living room, at the front door MY DR. COULD HEAR IT!!! Anyway, he did say that the program they use to do the visit had problems yesterday and he thought maybe I was having issues..plus he was working "from home" and not the office yesterday. He isSTILL very DISTRESSED over the ANEMIA... & wants to do some other types of blood tests, and he wants me to see a HEMATOLOGIST FOR A BONE MARROW BIOPSY. Which is what I thought also.. he put me back on the Colcrys for the Pseudo-gout.. and he thought "maybe" the "MTX" the Methotrexate I take and have been taking a long time off and on "maybe" making the anemia worse. We talked about some other meds etc, but 1st he wants that bone marrow biopsy. BUT RIGHT NOW I AM EXTREMELY FEARFUL OF HAVING THAT TYPE OF PROCEDURE DURING THIS PANDEMIC! He told me he would find a very reputable Hematologist but I also have to make sure my insurance TAKES THE DOCTOR. AND USUALLY HE LET'S DR. B.; MY PCP'S OFFICE DO MY BLOOD DRAWS, SEND THEM OFF & SEND THEM PCP AND MYSELF.Well he was at home & was not sure about getting the Lab orders over to my PCP's office, which he could send them to me on the portal & I can take them... I have CLUE where the closest Lab Quest is & I am NOT driving to Dallas for it... Quest picks up with my PCP.. so all I need is Dr. Q to give the orders to his office or over the portal.. anything to save me driving somewhere especially right now in a busy Lab office somewhere in Dallas.THEN to top it off after dinner I went outside like I always do and walked around & everything seemed to be 'Fine".. I went back in for about an hour & had my front door partially shut do to the heat but I walk out and my Bird Bath is completely turned over (it is anchored in the ground" even though it is fairly lite) then I see FEATHERS everywhere! Then I walk to the North side of the house & the cat that hangs around was laying in the neighbor's portion o the drive way but nothing like feathers so I figure the bird got away..Well SOMETHING TOLD ME to check the ground to the SOUTH side and look. Sure enough here is the remains of a large bird probably a dove, one wing one place and turn up another part of the bird further down right beside my house!!! Well by Now I am TOTALLY LOSING IT!!!

Hand X-Rays Show the severe damage of Long Term Inflammation, Pseudo-gout & Chondrocalcinosis & More...,

After weeks of waiting due to mostly the COVID-19 Virus pandemic, I FINALLY got the copies of my Radiology Reports on the X-rays of my Left and Right Hands...

                                      So Here is the "NOT SO GREAT NEWS...

Well after (not very patiently awaiting) my Radiology reports on my hands.. as I figured the news is NOT great on my left hand...much like "gout" and "pseudo-gout" (which the pseudo-gout is one thing wrong".. I have chondrocalcinosis (calcification within cartilage) found which indicate long term inflammation..( I suspected for years I almost constantly had inflammation in the left hand especially between my joints in most of my fingers) from the RA and probably osteoarthritis also. That calcification is caused also by a build up of crystallization from certain minerals in the synovial fluid between the joints and I have a narrowing between most of them but the base of my thumb and my wrist under my thumb is moderate to severe from the X-rays and Exams by my PCP, Rheumy and Orthopedic surgeon. My Right hand also has much of the same, but it is not as bad as the left one is. Same thing the crystals that are causing the cartilage to calcify rather than be "like softer cartilage like your outer ear for example)" as it should be. There is no "treatment" really. I cannot take NSAID's other than aspirin, and Motrin, etc... the prescription doses is what would possibly help is anything. I am on all of the medications they use, unless we change and go over to another biologic.. I am on Enbrel right now.. along with Plaquenil, prednisone small daily dose, the Enbrel, Methotrexate (which if I do not get ill with an infection they can increase my dose on this), the BC Powder, Colcrys (which I found out can be increased also but it's the latest one so I am sure they are making sure I do not have any side effects first).. what concerns me, is that this may be also what is effecting my lower back and hips also. It does tend to go to those as well as the feet.. About the only thing that would possibly be the answer would be hand surgery..especially on the thumb, and where this cartilage is getting hard... This of course is chronic and will not get better, only worse as time goes by.. unless we have a miracle.. Right now the miracle needs to be for the COVID-19 virus. It was honestly a bit better than I expected.. I felt with the way my fingers are bending and trying to twist on my left hand it would show to be worse. Going to and already does.. make very hard for me to don anything with my hands and fingers..type, open anything, zip anything, you name it, it either is impossible for me to do or hurts like hell to do it. Until this Pandemic is cleared where I can see my PCP, Rheumy etc.. I will not have any answers, but at least now I DO know (THANKS TO MY PCP for sending me the reports and explaining them) :) HE is my lifeline... so all I can do is read more on this & pray all of this Pandemic clears up and PEOPLE can get well, stay well, and try to get back to some type of "good new normal".. although my stuff is certainly not good, right now at this moment, I am not ill with the other and praying I don't and everyone in our town, county, nation and world gets well.. I have to admit I was quite upset when I read these reports.. even though I knew what they would probably say... but life goes on and so shall I. My prayers to EVERYONE!!! Stay In, Stay Well, & let's keep HOPE ALIVE!!!

MTX AND folic acid crucial together for many!!!

THIS IS SO TRUE!!! W/O FOLIC ACID I WOULD HAVE MASSIVE MOUTH ULCERS

Methotrexate is a medication that doctors prescribe to treat certain conditions, including adult rheumatoid arthritis, some cancers, and severe psoriasis.

https://raawareness.com/methotrexate-and-folic-acid-for-rheumatoid-arthritis/

Catching Up, Letting You know what is going on in my neck of the woods, and telling you I am still here and will be working on my blog.., so don't give up on me....

 

 What's Going On with Me, Facing Surgery on my neck and lumbar spine, The RA getting worse, going to the "casino" hopefully & giving you a thumbs up I am STILL HERE!

 

 

 

https://www.winstarworldcasino.com/

 

http://www.medicinenet.com/script/main/art.asp?articlekey=17685

I've got my reservations to go to Winstar on Monday and stay overnight. Of course I've tried to go at least 3 times over the past couple of months., and something always either happens, or the Lupus Flares on me, so I have to postpone my trip. I DO have many things to attend to, and feel guilty even running off overnight. But, unless this "cold" or whatever the hell hit me a couple of days ago, I hope to be able to get away for a day and night. Lord knows I need it. Actually I need about a week's vacation away from everything. But, then I have the fur-kids, and they already give me enough grief when I leave for a few hours, even with the "sitter" coming in a couple of times a day, they would be a total mess, if I left for that long.

Ironically, now that I am just "me" and "them" (Bub's and Peanut) I spend more times "talking" to them, or talking to me, or singing if I am in the car, or I go into the stores, and I am constantly trying to "quietly" talk to myself. My way of making sure, I don't forget anything important when I go out and do errands.

I've got several decisions to make, some of them have got to be made SOON, like about my Humana insurance. Open enrollment will end on Dec. 7th or so, so I have to make up my mind whether to keep what I have or go to a different plan and so forth. Some things are probably going to change now as far as my insurance, etc. I feel my best thing is to stay with what I have now, even though a couple of my own doctors are not "preferred providers"... this plan allows to me go to a "non-network" provider, and the insurance will pay some after I meet the deductable. That seemed to be okay last year. The only real issue is that my special orthopedic surgeon, unless things change is NOT a preferred provider, so I have to pay his portion of surgery out of pocket, but I know last year that was not all that bad, and the hospital WILL get paid as a preferred provider, so, that makes it a great deal better. I've learned after my hernia surgery, when my doctor was NOT a preferred provider, but the surgery center was, he was kind enough to knock down the price on his end, so I didn't have to pay him a great deal, and in fact I think they sent me back a little bit of a refund.

But, of course, since I put off TWO surgeries last year, both of which this orthopedic surgeon is the ONLY one I trust to do anything to my neck or spine, I will have to encounter bills from him for that. By the time one surgery is done though, I should meet that deductible thus that way, I may not be out of pocket a great deal for the 2nd one. My neck is a must. Plus I don't know what we are going to do about the RA. My right hand, of course my "dominant" hand, is in such horrible shape now, that after trying to stir something, or cut a couple of small limbs, or paint on a wall for even a half hour, cannot open jars, and I can't carry much of anything with that hand and arm. The swelling had increased so much between my thumb, forefinger, and now I have developed a "lump" on my forefinger, which is probably from the RA, and that arm and hand, wrist, continue to grow weaker all the time. I FORCE myself to use it, so I can keep at least some strength in it, but it will almost "lock up" at times, with the RA, so bad. I had a follow up with my Rheumy about 6 weeks ago, and they put me back on the MTX, but it is not working at all. The dose is not as much as when I was on it before, but I don't think it will be the answer.

I also suspect that some of the pain, weakness, and so forth are from my neck, rather than just the RA. With one almost completely flattened disc, and another one probably almost as bad, those in themselves can cause the weakness, pain, stiffness, and some of the symptoms... plus now I find it harder to turn my head, my shoulder blade is beginning to have that "burning sensation" from the compressed nerves in my neck, and now even sitting here for a little while trying to type, that hand, arm, shoulder blade, and even down into my "side" are hurting and feel like muscle spasms, especially in my right side. Of course everyone with any type of joint, cartilage, and bone issues, know that when this weather changed, it did NOT help matters.

As I mentioned at first, I'm either fighting off a cold, or hopefully NOT some type of throat infection. I even almost felt as if I was losing my voice, late yesterday afternoon, and my throat has been kind of sore, along with my lymph nodes once again hard as marbles under my ears.

So, that is why I said I "hope" to be able to get to go to the Casino without having to postpone it again, since my body is trying to fight off "something"... here in town there are a growing number of strep throat issues, along with what they may call it scarlatina, It is a very red rash that goes along at times with strep throat, and there was an article last week in the paper here that our doctors are seeing many cases cropping up...

Out of everything I HAVE had, (I hope I don't jinx myself) I've never had "strep throat".... I had horrible tonsillitis & had those taken out when I was about 12 or so. But, I've never tested positive for strep throat, which is a good thing. You can be a "carrier" though and not have a case of it. Neither one of my kids had strep either, ear infections, they outgrew, but not strep.

Anyway, I am actually working on a "list" or in the process of, the things I need to get done (LIKE GET MY HUGE HOUSE PLANTS IN) before the weather gets too bad on them... and believe me, almost all of them, especially 3 of them are so huge, thank goodness I have this "roller type dolly" made for plants to try and get them in the house. My Palm tree now that has put on 3 or 4 new prawns over the summer, stands taller than my front door. And my fern, that started from a half dead 2.00 one I got at HEB is about 20 feet or so in diameter, and they take up a great deal of space, and are very heavy.... plus I have 4 HUGE Airplane plants, that are as large as I've ever seen so they also are extremely heavy and bulky... so again I am glad I bought that plant dolly a couple of years ago.

The BEES are about gone! He came back out last week and collected as much honey out of that bus as he could reach. It was between two of the heavy metal pieces inside the bus, and he had to cut into all of that to get to the main hive, found the queen, and he said there are now more than 40,000 bees, that came out of that bus!!!!

But NOW, getting someone who has the truck, trailer and wench to pull that piece of heavy bus up onto a flatbed, and haul it to Maverick or someone they can sell it to, will be a chore. I've tried to get the word out, because I am sure with all the heavy metal in it, it would bring some bucks, if you could get it hauled to somewhere like that, that buys scrap metal.

Anyway, there are always a billion and one things you can find that need to be done when you have a home.... I had almost forgotten I STILL HAVE THAT DAMNED BROKEN GLASS in my back bedroom... that I have almost solidly taped in with Duck Tape, and have cardboard over it, but I fear at anytime it could come crashing out of there. I could put a new piece in myself, but needing someone else to help hold it up while it is "pinned" in and then glazed or hell I've put some caulking in a couple of mine in that back room for now. It helps to sturdy that old glass pane stuff, for now, and really those 5 windows need the other "storm type windows" put over them like the rest of the house...So again another project... they just keep coming and coming...

I have got to get busy, so I close for now.... again still lots of stuff needing to be done, taken care of, and so forth... thus the reason I am not here very much. I am online some, looking things up and so on, but I don't have a great deal of time to post on FB. I do well to post on my blog, and do a couple of other things...

Hope all is well with each of you.... Me....

From Running, to walking, to running, and trying to get my body to keep up and the Lupus and RA to "behave" - Remodeling, Houses, Contractors, and Coping

Well I did have one contractor come over yesterday afternoon, and I got tickled - he was impressed how much work I have already done! I told him I would continue to do what I can, what my body and hands allow me to, and that way when they get where they can come, they can do the larger things like the railings, and the fence... and later side that garage and put a new door on it. I am in a mood I guess I cannot describe.... I have not really been here very much, it seems all I do is run, run and run... I had to take a huge amount of shred stuff to Waxahachie yesterday, so I drove the Elantra to get those miles on it so the computer will register correctly for the inspection. Then I went into Lowe's, bought a couple of "toggle" switches, I really want to use those in that house also... and then some plates for the outlets, again several need the updated outlets in them... I looked at flooring, the laid linoleum... even though I would love to do something else, with the pups, I think I am going to have to stay with that, and actually the one I like is a "standard" at Lowe's... plus they would even lay it very reasonably, if so happen something went awry and my contractor could not do it... I FOUND MY GLITTER FOR THE PAINT! I knew they would have it! I had to search and search, then finally asked two people and one lady knew exactly where it was (which was in a very stupid spot if anyone wanted to find it).... I priced fencing, and I did 5 5 pieces of chair railing... that should be enough to finish the living room! So, a few touch ups with the paint, and putting those up.... I have a new door knob for the front closet... that stupid thing broke about a month ago, and there was no way to get into the front closet, I beat on it, I pried on it, I even took the pins out of the door, and I thought I would never get it open... so finally when the plumbers came, they thought they may need to get in there, and they were able (with a great deal of elbow grease) to get it open finally... of course between myself and them we destroyed that door knob... NEVER in my life, have I seen an "inside knob" that damned sturdy.... I never thought I would get it out... so I bought one with the plates and a glass knob on it... I wanted to do that in this house to all of the closets and never got around to it... and on Amazon I can get the whole thing for about 14.00 including the back plate... so I am going to put that up after I get that closet painted... those closets have NOT been painted since we moved in which was about 1964 or so! Dad painted and did everything else, BUT not the closets, they are horrible! So, paint that is left over, that is okay colors I am going to use in the closets.... anyway, I still have lots to go... I am having him build me, kind of like a cedar platform off the front porch, so it will be large enough to hold my inside plants when I put them out during the spring and summer months.... the porch... OMG those rails were so rotten... I took all of them down myself earlier this week. I only like one post, that the concrete bolts had paint on them so I had to WD 40 them and now I can get those loose also.... I hope between me working until the other guy can come, I will have him paint the ceilings also... no way I can do that... and finish up the stuff I cannot do... I will be moving in by the end of October, first of November... I hope... depends on my own health, the weather, how quickly he can come and get on it... like I told him the garage siding can wait for a bit... mainly the fence, finishing up the painting inside, and I've found a kit I maybe able to help the inside of that damned old tub look better... I am going to order one and try it... it is hideous, but having someone come and redo the porcelain on it would be thousands of dollars... I still want to break that sucker into pieces, get rid of it and put a walk in shower in there... but I know the work trying to take a sledge hammer or a saw to that tub and cut it out of there, it takes lots of work...... Anyway, again I am in a "funky" frame of mind right now... I thought moving over there would be what I wanted, especially after the remodel, now I wonder if that is a good decision, but I cannot do the work this house needs... I cannot roof it, and could paint it outside, but only so much, and it just needs someone who can do the things it needs themselves... a time ago, I could have done it all but the roof! LOL! but that was when I was in my 20's and 30's..... I have painted an entire house outside more than once for sure.... but at my age and with my health issues, my body is already mad at me... my right hand keeps swelling up, and my right ankle is still not all the way well.. and my neck NEEDS SURGERY! I was so hoping to get that done before the end of the year... once again I face whether to keep my insurance or go back to another, and that is coming up soon...more stuff that needs to be done!  Rhia

Abscesses, Catching you Up, and letting you know that I shall be back very soon... please continue to follow me.... the realms of life, autoimmune illnesses, Lupus, Sjogren's, surgeries, pain pumps, & the "trial"...

I apologize for being "MIA".... LOTS of stuff happening here... for one I had BOTH abscesses incised on Monday... the "1st" one got infected again, even though we thought it was okay, then the other lump on the right thigh got horribly abscessed, so the surgeon opened the both of them up on Monday... IN HIS OFFICE!! Do NOT even get me started, I am one tough cookie when it comes to pain, and procedures, but I should have been taken to outpatient and put under sedation... I have pics of them on my FB page, and honestly the right one looks worse today than earlier in the week.... I am on antibiotics, but I do not think they are helping the right one at all... I have been on Rifampin and Bactrim now for weeks and weeks... and they have helped the left thigh, but as I said the right one is swollen "angry red" and HURTS like heck to have to open them both up at least 2 times a day and go inside them with cotton swabs and peroxide to clean them out.... and I fear I am running fever.... and some may know that my "internal pain pump" also went into a motor stall... well they had information the first time it "re-started" itself, and my pain doc reset the meds in it, and that lasted about 5 days... then a week ago yesterday, the Medtronic Rep drove from Dallas down here and met me at the hospital to "turn the flow down to nothing"... so just in case it starts again, I won't get the meds much at all, and then they have me on strong oral pain meds for now... so I face surgery to implant a new one, but no way will they touch me in surgery until these infections are cleared up... and gosh knows when that will be... then the "trial" was this week for my soon to be ex-husbands wreck, in March 2014, when I was in DC with the Arthritis Foundation. I did not go at all until yesterday mid-day. I testified, which meant reliving the entire ordeal again... not fun, but then I drove back home. I did not stay, honestly my doctors would have freaked had they known with my current physical issues, drove 35 miles plus to downtown Dallas, went into a "germ filled" courtroom, etc... but I felt I did need to say my own part of all in this.... in so MANY WAYS this horrid nightmare of a wreck, totally "wrecked" my life, physically, mentally and emotionally, and in some ways even more than Jim's... there is a great deal of the first almost 3 weeks, he does not remember at all... and he does not remember a moment of the wreck in itself... anyway, due to all of that, along with my Mom and her sudden new medical problems, I have either been here just a tiny bit, or not here at all... usually on the sofa when I can be, or taking her to the doc, or myself... and then to the court house yesterday for a couple of hours.... anyway, I wanted to catch everyone up a bit... I have felt badly about not being able to "share" posts, and put things up on my blog over this past at least a week or more... but honestly, I have felt so lousy, and with the trial and all of that... plus I am trying to get well enough to "adopt" a new pup... I still miss my Tazzy so much, it just breaks my heart each time I think about her sweet face.... so hopefully after next week... my hopes are there is a huge load lifted off of our shoulders... and I can "hopefully" try and find some way to put my life back together... anyway, I thought the comment was cute Tiff.... and thanks all... also hope to be back here, posting, sharing, and getting back to what I love to do most... my advocacy and activism...


I am extremely concerned about the right thigh and the abscess... it is so totally red, swollen, and it is just a nail biting horrible pain to have to clean it all inside with peroxide and cotton swabs... but it has to be done, and either I do it, OR I do it!

Anyway, to ALL of my followers here, please forgive my brief absence... and I shall be posting more hopefully from now and forward... by the way, the damned pain pump keeps turning on and then stalling... each time it does that, my "side" starts beeping... that was a real "hoot" yesterday at the trial... everyone would look at me... I had to wonder what they thought... they were supposed to have been told about it, but I think that did not get mentioned, thus it was kind of funny to see people staring at me....

Sharing the Excitement of the Coming Months! (Trying to Ignore the PAIN of these Illnesses - RA, Lupus, Sjogren's, MS, Myasthenia Gravis, Perniscious Anemia and the list grows)

I have been trying my best to "brave" the chill in the air, knowing that means several things. Shorter days, cooler weather, Fall colors and Autumn leaves coming down. Holidays here before we know it, cooking, baking, and the smell of Thanksgiving, pumpkin pies, rolls, wonderful home made quick breads, and spices like cinnamon, cloves, nutmeg, and those "pungent" aromatic hints that Winter is here, Christmas, and before we know it,  2014 will be a memory, and 2015 shall be in full swing.

My bones, joints and most of my body HATE the cold, aching, throbbing feelings that are the "bad" stuff following along with the good.

I LOVE to bake! I have always loved to bake anything sweet. From cakes, pies, cookies, cobblers, and the calories that go along with fudge, peanut brittle, and the confections that almost feel like they are going straight to my hips as I just think about them.

Alas, the fight against pain, fatigue, and stress versus the fun of baking, cooking, and the heavenly sweet potatoes, gravy, ham, turkey, stuffing.... and yes it makes me hungry just thinking about it. But l know that I must start early - each year even earlier than the last if I truly want to make all of those goodies, getting them all packed up with bows and in beautiful sacks, boxes or containers to give out to our neighbors. I recall the first year not too long ago when we did it, I had made like 5 different types of quick breads, fudge, fruit cakes, candies and cookies with ribbons and cards tucked away for remembering our neighbors and to bring good cheer to those who surround us with their friendship truly is throughout each year. We have wonderful neighbors. They do some great things for us during the year and we try to reciprocate with the baking and cooking.

It is also getting close to that time we make our "New Years Resolutions"  or more like rather than "resolutions" trying to set "goals" for 2015. Of course after March 26th, 2014, and all that transpired on that one fateful day; as I sat gracefully awaiting Jim to arrive in Washington DC, those words still ring in my head that "your husband has been in a very severe car accident". He was "ran over" by an 18 wheel tractor trailer...

At that very second, I knew that ALL of my "goals" for 2014 just were blew out of the window, thrown in the street, and ran over by a bus... train and then hit by a plane... Of course goals were the very last thing on the agenda once all of that hit.... every and any plans I had made for this year went out the window, bath water, tub, soap, and almost the baby... if you take the old saying to heart. ;)

So, the very last thing I want to do for 2015 is make "grand plans" only to be on the floor again, cleaning up the mess. Lord knows this year has been a ball of twine, rolled and knotted, with no signs of ever getting it ready to crochet a sweater from.

Thus, I with much hesitation begin thinking about my "gifts" for 2015. My hopes are that I do get to put as much of myself into the throws of activism, ambassadorship, volunteer work, and advocacy for all of us. We definitely NEED many, many more "educated" people when it comes to the world of Arthritis "101"!!! As a friend of mine and myself had an email conversation a couple of weeks ago, it continues to overwhelm me just how many people in our world, very well educated at that, do NOT get "ARTHRITIS" & all of our Autoimmune issues.

Many of the specialists we go to that are supposed to BE SPECIALISTS in these fields and have the knowledge to HELP US. YET, many of them are NOT educated, especially on the latest of technology, advancement in medications, & having so many clinical trials that have came into play, BUT we still don't have many of the answers we continue to search for.

I believe as "patients", loved ones, and close friends, we are "drawn like moths to a flame" when it comes to anything we can "throw" at an arthritic illness, autoimmune illness, chronic pain and/or other medical issues. We tend to spend more time researching these new ideas in science.

From a supplement, to an older drug used for malaria, to a brand new biologic making its debut in the news. We have made some head way by turning back the clock, starting over at the beginning of when it first arrived.  I am not sure if I believe in some of the stronger more advanced biologic medications. Some of the side effects that seem to be almost worse than the diseases, illnesses and syndromes themselves.

So, as I am contemplating the things that so far have been "diced, sliced and served up" on my "plate" for 2015, my hope is that I will be able to continue to do those, along with find the place where my "voice" is for my next book. I had made myself a wager, that I would at least complete 75% of the 3rd book by the end of this year. Alas, as I began stating in this post, never will I again allow myself to get so overly thrilled with the idea of finishing the 3rd book that I forget the many factors that can "over throw" your ideas. And if they can, and do... they will.

I pray that I DO get to write that book. It maybe the last one I complete, but I will be always trying to strive to write daily, no matter to be published something once again. Life begins where it wants to... sometimes and then it takes you further and further into the realms of distant waters, surrounding you with ocean waves and not one iota of land in sight. After days and days  the clouds roll away, the thunder and stormy waters return to a calmness, and "Voila'" you are back on the correct path again, with the sun shining on your face.

Cherish those moments.... never let anyone or anything keep you from "your own dance".....

:I will be adding my "list" of things I would love to see me get my "teeth into" firmly.... not as in a vampirical status, but in the place that I can "taste" what I have been put here to do... help others...

                                                                                                                                                                                                                                     

Life this week... kind of like "Hell" Week - from Sjogren's, to RA, to not getting to see my Rheumy... to every other appt on the planet...

Talk about nuts! That does not even describe what this week is and it is just Wednesday.... my Rheumatologist appt got postponed until Sept.... he had a schedule mix up and could not be in the office yesterday. I had been sick to my stomach all day and finally had gotten in the shower (my appt was not until 3pm) taken a shower and gotten myself a bit better as far as my stomach, and as I was drying my hair, I could hear Jim on the phone with whom sounded like my Rheumy's office, I could tell, it was going to be cancelled, and I knew then it would be weeks or months before he is in again. Now that he does research, teaches and just sees a few patients, getting to see him takes a feat of God almost to get in to see him. But his office manager told Jim to have me send them an email & he will see if there is something he can do as far as medication etc before the first part of September until he can see me. So, then I DO HAVE A PIN HOLE pulled in between a molar and my Sinus passage. That is why water pours out of my nose when I try to gargle or anytime I have some water in my mouth and I bend my head over. Plus "air" swishes out of it, making a really odd noise and talk about drive you nuts. He is trying to allow it to "seal up" on its own if possible. He said that one "socket" is healing a bit slower than the rest, but he hates to "mess" with it. He would rather see if it does seal over by the time my dentures comes in  - about 7 to 10 days it looks like... then if it still has not sealed over, he said he would do a minor procedure to seal it in. Of course it always has to be ME with some WEIRD and strange issue... never fails.... he did another type of "warm wax" impression on Monday. He is doing some special work on my front upper teeth to try and minimize my overbite as much as possible. So, he took that in order to do more fine tuning into the dentures before they are made. I am supposed to get to see them next Tuesday I think on the computer. He was still adjusting on them this week, so he say now it should not be much longer now. Wow, when he just put that wax in there my mouth felt so "full".... I hope the hell I can stand those dentures in there. It seems like my mouth is so much smaller than what they will be like in there. I pray it all comes out okay. This has been a great deal of time, patience, money, and more money.... to just get my teeth in, so this has be RIGHT!! And Work! I am hoping that even though I cannot have a biologic right now, I maybe able to be put on "Xeljanz" in with my MTX, or at least up the MTX a bit until I can get something further done for the RA/Lupus pain, swelling, stiffness... I am having mortal hell with it, and there is no way with me going through all of the mouth stuff that my Rheumy would allow any biologic at this time. Anyway, I am sending him a message today asking him if we could try the upping of the MTX or the Xeljanz or anything right now until I get through with the teeth and any chance of infection. Then we can go back to some type of biologic. Things are nuts here... so if I am not around much, it is just because we have an appt every day this week. Plus I feel like someone ran over me twice and back over me 3 times with a train, plane and automobile today. We are expecting storms anytime and bad ones possibly. By the way my body feel, it should be a damned monsoon.... hope all is well with you and yours.... Hugs. Rhia

Border for Illness? Researchers for Chronic Illnesses, Autoimmune Diseases Connected in many Ways?, Lupus, RA, Sjogren's - How Many are you diagnosed with?

I post this morning getting off the "days gone by" and back to the medical world at at hand. This particular post came on one of my Med Page Today's News letter I get daily. It caught my eye for several reasons. First of all, this particular "illness" can be caused by being in water that carries it, dogs can carry it, rodents, which means larger cities with people that live on the streets could be more prone to it etc. But, in everyday life we, meaning any of us could come in contact with it. I young boy came in contact with it after being in another country, and he got ill after returning home. He was in and out of the hospital with what seemed to be aches and pains, stomach upset, and almost like flu symptoms. But, after researching his travels of latest they were able to put together the child had contracted  (leptospirosis) http://www.medpagetoday.com/Neurology/GeneralNeurology/46185...

Some of these types of illnesses are difficult to detect if they right questions are not asked, and now I have noticed more and more doctors asking me if I had been on a plane lately, traveled to another region overseas, been anywhere out of my normal home life anywhere, where you can pick up some of these illnesses. Not that they are not only there, just like this one, dogs can have and carry it, but it is more likely to be a more aggressive strain that your body may not be able to fight off unless you tell your physician right away following a trip to somewhere you have been, then suddenly you come down with symptoms of illness. Even around our world today, it seems Polio, which I can barely believe is back on the playing field of illnesses, and with a rampant rage from what I have read. I honestly thought polio was another one of those illnesses like "small pox" that had been eradicated from the world. Yet here were are with Polio showing up and in a good number since at one time we had cases almost down to nothing.

I've never had the pleasure of going anywhere out of the United States for any type of trip. So, I do know about all of the "standard" inoculations you must take in order to go to certain countries and so forth. These are due to coming in contact with some illnesses that may not be here, but they still exist in other parts of the world. Which leads me to the question... we are growing daily in to a "smaller world"... before you can type this out everyone all over the globe can be reading this in just about any country, any nation, any household, within the "hit" of enter on the key board. Thus it is no wonder why so many of these diseases we once considered gone from out nation and possibly world for good, are alive and thriving in the country you are flying to, or even the person you are sitting by could be carrying that illness that might be able to get on board your track or any numbers of illnesses such as these, that we don't often think even exist in in the USA, but could lurk in the very person sitting next to you. As highly intelligent as we are here in the USA, along with the brilliant researchers in the UK, China, some places such as India, we have the smartest doctors, researchers, fellow medical personnel that have ever been. But, our "diseases" seem to be getting a bit smarter also. Autoimmune Illnesses such as RA, Lupus, Sjogrens, MS, Still's disease, Diabetes 2, Myasthernia Gravis, Pernicious Anemia, .... others osteoporosis, FM, CFS/ME.. just a very few of the hundreds and hundreds of chronic illnesses people in our nation as well as all over the world live with, we are as in much deserving of the best treatments, the latest researchers, medications, testing, and all that has been found out by those that use their entire lives dedicated to finding a "reason" for these, finding a way to put them into "remission", medications to help with all of the side effects and other growing number of illnesses that "stem off" from Lupus, and such. More and more we find out due to this "pattern" of the World Wide Web, that at our fingertips, we can "see" how many other have all of a sudden come down with similar side "illnesses" - more like a Secondary to the first one, and often with very similar symptoms. RA and Lupus seem to run hand in hand... along with those I see that Sjogren's, Raynaud's, Vasculitis of sorts, Shingles, Heart Problems, Kidney problems, Liver issues... all almost seem to run neck and neck with what your were initially diagnosed with. It is overwhelming when you begin to research your own "symptoms" and diagnosis, that physicians give you. There is such an evolving realm of the latest and the greatest, of cures, of things to "explain" how Lupus or RA maybe genetic, or how CFS may come from this viral syndrome, or your teeth are falling out simply because with Sjogren's, they literally "rot" from the inside out, not like regular dental caries do. When you went to the dentist as a child, if you went, yo may have had the dentist find a small "cavity" a spot that was starting to become soft and weak, more or less "rotten" as I would call it, but it was "seen" from the outside of the tooth, then usually confirmed by one of the old fashioned cardboard mouth cutting X-rays they put in your mouth, aimed the machine at it, and then had to wait to see how it would look. Of course now it is as simple as holding a small "stick" in your hand, they put a small "digital" X-ray machine up there and they can snap away and get as many as they need. My latest adventure was the "panoramic" one. When that machine began to go all the way around my head, encircling it... and then immediately, I SAW every ROTTEN tooth in my mouth  almost fainted. The difference, these teeth "never" showed signs of issues. I never had a spot that hurt or turned dark, I never felt I needed to go to the dentist honestly, and after not having dental insurance for a long time as long as I brushed, flossed and took care of the, I thought I was "safe" as far as my teeth went. Then wholly cow a year ago, I huge piece of a back tooth broke off while I was eating something, and it was something soft.. Well before I could even get to the dentist another one did the same. I was wondering where all of a sudden this was coming from. I did know that "Sjogren's" could cause dry mouth, dry eyes, and was a pain when it came to those things. But not one of my doctors including ANY of the Rheumatologists, EVER informed me about the very "HORRIBLE" issues of Sjogren's...  Now here I am at 54 years old, of course IF I felt like fighting my health insurance com[any, I may get 60 percent of the $8,000.00! bill paid! But, while I am bickering with them, I am losing more teeth, which means more bone loss daily, which means a possibility of the implants or not wanting to fuse into the jaw bone properly... and you know where I am going..
So, who has "estimates" of $15,000.00 %$23,000.00 or even $8,000.00 lying around to give their dentist? I venture to say NOT MANY! Don't get me wrong, many of us probably have the "credit line" on a card or two in order to come up with $8,000.00. But, I mean "clear no interest cash payment", so when you walk out with all of your new and beautiful teeth, you do not owe on them until your are 95 years old!
I had and have choices to make. I could have "tried" to fight like hell against "Humana" and gotten a possible 60% (by the way even IF THE DOCTOR IS ON their PLAN) they still ONLY PAY 60% and not a penny more, even though this is caused from a medical problem. So, I would have still owed 40% of a bill that in Dallas at any of the larger Oral/Max Surgeons, would have been three times what the other 3 "estimates" were. So, I would have been well away, further from my dentist if I happen to come down with an infection or dry socket in the middle of the night or needed something on the weekend. You can BET there is NO WAY any of those in Dallas would come in, open up after hours... but they would tell you to either call this or that number, OR go to ER! Like the ER is going to do a damned thing about a tooth infection or a dry socket. Where, here my dentist is about 2 minutes away, 5 or 6 "small" city blocks and I bet if a dry socket or infection appears at night, after hours or on a weekend etc... HE DOES open the door to come in and fix it! Then I faced the fact that NOT one soul I know could drive me back and forth to Dallas right now. If I had any type of anesthesia (and believe me this time on Friday, I am asking him to "turn up" the gas) ... they were having heck getting the nose piece to stay where it neded it to be and I was not getting any of the medication I don't think... it never felt any different and I was not more relaxed as I usually am if they used the "laughing gas"... so Friday when he pulls SIX TEETH, I will make very sure I am "feeling some effects" from the has first. In fact I am looking that puppy up today to see how they determine how much and if you can ask them to "turn it up".... ;)




So, right about now you are asking yourself, what subject is this woman on today? illnesses" that come from other country's?, the many different realms of how autoimmune illnesses can turn from having one to several, how we need more informed physicians on these illnesses that will TELL US that SJOGREN"S is ROTTING YOUR TEETH PROBABLY, but we need to look with an X-ray because they are not "regular cavities" ???? or... How OUR world gets smaller, our diseases worse and spreading violently, how the USA does not care about "our healthy" BUT the CONGRESS SURE gives a darned about how much "medications, research, and pharmaceutical companies line their pockets?... Well, if you said ALL OF THEM! YOU get the prize... to me in one way or the other ALL is connected... we have illnesses that don't really "come" from here... but certainly"get here" rapidly from planes and ships, or not just people but animals, foods, anything shipped here from another country could have the capacity to make us "ill".. with one thing or the other... and every time I was an apple, or melon or a watermelon, banana, peach... you name it, I fear I am bruising it due to how hardly I am scrubbing.. like a child with dirt behind their ears ... trying to get every little germ off before I dry it off.
It is to the point we are inundated with worries about "germs", Illnesses, diseases, and all of the viral abundance of things out there that can make you a tad ill to those that can put you into the ICU for weeks on machines to keep your heart beating and your lungs breathing.

I am NOT downing the place our medical world is taking and has taken us. But, at times we have become so extremely concerned about the aspects of illness, we have a difficult time trying to enjoy those days we are NOT ILL! Now I know, like myself, any and everyone with a chronic illness, from Autoimmune Illnesses, to CFS, to like Jim as I am learning a (SCI) Spinal Cord Injury, & those that have lost limbs, had to have multiple joint surgeries, this list could go on forever about the about of those of us with some type of "chronic pain and/or issue, either in our own life, or in the life someone you are close to.
I've tried to figure out in my own "tiny small half fogged out brain of mine" why is it we seem to HAVE MORE illnesses... when I was a child I did not know nor hear about ALL of these illnesses, those with chronic pain and suffering, and those that had been harmed in an accident or came down with some "foreign" virus. IF there are more now, why? Well, if my own "stupidity" of a self would think again, as I have said before and will repeat myself again I am most sure ... we have MORE PEOPLE, WE ARE over covered in NEWS happening right then... we are stnading under the helicopters when they are searching for a thief. Or we have someone like Richard Engel that sometimes I wonder about) who seems to love to "dig down in the trenches" literally with those guys and girls over their protecting us... so first hand we see the bombs, the shooting, the massive about of bodies being dragged in a pile to be basically push into a deep pit and covered over. Because there are SO ANY BODIES, THERE is no way they could bury them all. Thus they will later probably build some time of "shrine" on that plot of land so they can "remember" those innocent men, women, and children that died needlessly over a "holy" war! This stupidity over in the Middle East is jut that stupidity. It has nothing to do with the "GOVERNMENT" or politics. Oh they may try and tell us that, but it is a war to help the people and to get back to "democracy" but  it truly is a "HOLD ABOUT GREED, CORRUPTION, & POWER... it is about "one's them "God's beliefs " over how they feel about"
It is NOT that MORE of these types of things are happening. Look back and you can see we got these pieces of information, NOT on an "I-Phone" or Smart Phone. We did not open our I-Pad, Laptop, or run to your desk top to check out what was going on . Thus the "news" was happening all along, we just did not know about it until we heard it on the news channel or happened to see it in our local paper or the Dallas Morning News. If bad weather was coming, of course we were informed as quickly as possible on our local news channels, but sometimes by radio, rather than on the television.
It has not been that many years ago, when "kids" were kids. We rode our bikes, went to school, learning math, reading, and thinking about our next Summer Vacation. Now there are kids that were my age in the 5th, 6th and 7th grades that are bringing loaded guns to school and killing  my fellow class mates. I can't even imagine where I would get an idea like that. I grew up in the 70's listening to the Eagles, Stones, Procol Harum, Fleetwood Mac, naming them from Elvis to Porter Wagoner, and NONE of that music made me want to "harm" myself or my parents, or anyone for that matter. But the point of the matter is, we DID have probably many terrible things going on. We were in wars, like Vietam, and the Korean War, & have since then had to FIGHT to keep our Nation a free nation.

I am not saying that it is a bad thing, but kids now days know MORE about guns, war, fighting, drugs, sex, & just about any other crude, distasteful subject you could dream up to talk to them about, and bet is, many of them would be able to tell you something about every category. IF you asked them where they heard about a particular type of weapon, or some type of drugs out on the street, if they want to, I am quite sure they would say one of the other students, or students parents, or teachers (kids of course sometimes overhear teachers and our) conversations.

There are things to this day, that I would be clueless to talk about when it came to certain subjects, and I know my almost 30 yr old and 35  (I think almost 36) year old could come right out and tell me that had known that for years and years!

Eve though our "time lines" in many ways are somewhat the same.... many of us in our late 40's early 50's like clothes, music, movies, concerts etc just like my 30 and 35 year old does. Then there were MANY differences in how I raised them to think versus how my Dad, wanted my Mom to "teach" me. SHELTERED! Keep the women of the house "dumb" or not as intelligent thus men keep control, and things stay "in harmony".... Sorry Dad, but that was total bull crap!

Not me, I tried my best to teach them what was RIGHT and what was WRONG!, how to treat others, and to get the best education (at that time) that you can or find something in a job you "love", and then hold onto that job. If it is not really quite the right one, that one will appear someday if you are patient. Well guess what... most of the things I taught them "stuck" BUT "patience" is NOT one of them... if they WANT it they want it NOW!!! No saving up, no waiting until we have the money, not giving thought to other things that could effect the bottom line, and yes to this day, I hear it from my daughter quite frequently that they are "talking about" saving up for the house they finally want to build.... BUT the next week they will have a new vehicle or another travel trailer when the huge hail storm beat it to pieces down by the Frio River this last before before when they had the BASEBALL sized hail!!!

Okay, after taking the VERY LONG ROUTE to get to my point, is exactly what my point is. As "technologically intelligent" as we are, the things we NEED to accomplish are mind boggling and astronomical. I know with the highly educated, and some of the best genius' that have ever been on this planet, someday, someday, they SHALL bring US the LIGHT! It will "turn onto" a whole new way of treating illnesses for all. It will be something that will totally change Medical Science and send the "older doctors" packing because it shall be that advanced. I honestly have no doubts in that. OF course it is NOT going to happen "overnight", in a decade. or whatever kind of "number" you want to calculate it to.

The ONE THING that SHALL REMAIN CONSTANT throughout ALL OF THIS NEW ADVANCEMENT and what shall NEVER change... and that is "US". WE the volunteers, the advocacy people, the Ambassadors, the Activists... our VOICES MUST remain the one CONSTANT now, and forever until eternity. We are an integral part of what MAKES Laws come from being a "thought" to ACTION! We are the voices that ring out on Capitol Hill with groups such as Arthritis Foundation, IFAA, WEGO, The Lupus Foundation... and SO MANY MORE there are too many to truly name... and within the "cyber walls" that bind us ideas ""give birth".... and they teeter and totter just like a toddler as well make way for bigger and better place to go. And as we Watch that "one small idea" become living and helping out those who need it so desperately... we can thank one another and our own selves for the tireless, no pay, volunteer, hours for making that become what it is today.

So, as I cover many things in this post... I hope you pick up something that gives you a 'light" tonight to take with you... and make your own idea "be born".....


Here is the link what began my "brain" power and thoughts or what is left of my brain... what is left and that is not of too blogged to write the above...

http://www.medpagetoday.com/Neurology/GeneralNeurology/46185

Ra - Orencia and MTX Combined! Initial Studies sound promising...

Orencia Combo Tops in Early, Severe RA

http://www.medpagetoday.com/MeetingCoverage/EULAR/46288?xid=nl_mpt_DHE_2014-06-13&utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&eun=g773630d0r&userid=773630&email=rhia@ravishingrhia.com&mu_id=5952786