IFAA, Tiffany and the Entire Dedicated Group with the International Autoimmune Arthritis Foundation - Thank you!

I had a very pleasant surprise at my door step Tuesday after the holiday weekend! My “regular” mail had already came. But, later in the afternoon, I stepped out on my front porch to see a large package with my name on it!! At first, I thought it was the “blue ribbons” that I am waiting on for pain awareness month. They have not sent them yet… BUT, IT was ALL KINDS OF AWESOME STUFF FROM THE IFAA AND TIFFANY! I was so thrilled when I opened it… an awesome very sturdy reusable bag, along with others that are also perfect to take to the market from the WAAD 14! I also had a nice pen with the IFFF Logo on it, and a huge book that came from the Autoimmune Summit 2015 - with all of the data from research and so forth they discussed at the Summit in New York! smile emoticon I am really enjoying lots of the data in there… extremely interesting to me… anyway, I will get a better photo up later. I had to take this one with my “web cam”. I am charging the battery on my good digital camera. So, I will make more when it is charged. Again, Thanks to IFAA, Tiffany and the entire gang… what an awesome job all of you do…. I hope to soon participate more. Due to all of the “circumstances” between my own health, My Mom’s health, then all of the other personal “agenda” that I HOPE to have basically over with in October… my hope is to get back on tract with my activism, advocacy, my own research, and doing more writing on my book, as well as working even more on my blog… by the way my blog seems to be “getting more attention”… and I am thrilled about that…

 To Learn more about IFAA, want to join in their Advocacy team and more  the URL IS:

http://www.ifautoimmunearthritis.org/

The "NEVER ENDING" Saga of Rhia, Autoimmune illnesses, cellulitis, abscesses, and feeling the pain, disgust, frustration for others like myself that seem to NEVER get a break

This is a post I sent to a friend on Facebook... she also is just having one hell u va time, dealing with "crap", illnesses, and all that entails when you feel life NEVER gives you a break! I realize some of it I've already posted, but believe me... I feel it is totally worth repetition... so others KNOW they are NOT alone!

 

 

 

  I SO, SO, SO can empathize with you and how you feel. It has been so much the same for myself. Between the already issues with Lupus, RA, and so forth, then the accident last year in March that my husband was in, now he has left and moved back to WA state.. we are filing for a divorce and honestly I am NOT sure to this moment WHY? Then I need lower back surgery, then my Mom in the midst of me finding out what was wrong with my hips and legs, which was my back, she comes down with a severe hip issue, that also turns out to be her lumbar spine also. She is 80 years old, and they do NOT even want to discuss surgery on her...but they are trying with medication, PT and supposed to do some epidural injections on her. About the time we got those scheduled her last living sibling, a younger sister, passed away of a rare stomach cancer, she had been fighting for a couple of years, then BOTH of us come down with some kind of stomach virus, & I spent several weeks of it seeming to come and go, and even got ill Sunday morning...I was so upset, I felt "fine" was dressed, and was about to walk out the door, and my stomach felt "odd" and sure enough, I almost did not make it to that bathroom and was sick to my stomach again, out of the blue... then I have been dealing with a "lump" on my mid left thigh now for about 9 weeks... my PCP thought it was cellulitis, and of course with my immune system being so compromised, he immediately put me on TWO antibiotics, which helped some, but after 3 ROUNDS of them, 7 days each, he wanted me to have a surgeon look at it, and cut it out...well, I had a hard time finding a surgeon close enough that took my insurance, finally did, but he could not see me for over a week! So, all of a sudden this "lump" that showed no signs of an outside infection... has not been red, warm, or appearing to be infected on the outside, but a week before I was to see the surgeon I woke up to it being very red, warm, and appeared to almost be trying to burst open... so I quickly called mt PCP and told him... so he put me on another round of the antibiotics until I could see the surgeon. Well by the time I saw the surgeon which was last Friday, it has abscessed inside, and he had to "CUT" it open, and let all of the infection out of it! He also sent some to be cultured, and I must have had "two layers" of infection. One kind of shallow, but another much deeper. Now he did this in his office, just injecting lidocaine in it, which hurt like hell and burned worse...and I am "tough"... nothing usually bothers me... but then I had to take the bandages off twice daily, after getting home, and "clean it out" with Q-tips and peroxide... when I took the bandage off the first time on Saturday, OMG I have a HOLE in my thigh deep to it almost feels like it is to my bone, and wide... like 2 inches deep and that wide... I almost could not do it, but I knew I had to.. so I did that and then finally yesterday, it was not quite as painful so I took a shower and used antibacterial dial liquid body wash which I had already been using, and he said to allow the soap and water to get into it, and clean it out... I did, and it hurt some but not all that bad... but then this morning, I began to take off the bandage and it again looked awful to me... it is still draining a bit... but I see him tomorrow thank goodness... now he did not address the "other lump" on my right thigh, almost in the same spot as this first one. It came up after my PCP began me on antibiotics, but I never said anything about it, thinking that medication would take care of it also... well it is still there, a bit larger, and I fear it may be the same thing. I had told the surgeon's nurse Friday, but I guess he forgot about that once he was working on this other one. So, I've got to point it out to him... it is just like the other one... it shows no "outside" appearance of an infection, it is just a lump under the skin.... to top that off my Rheumy wanted to put me on a new RA Medication, but before we could change I had to do a whole entourage of blood work, TB testing, Hepatitis, etc... well all was "okay

accept the TB test... that particular test has to be done just a few hours after the blood is drawn or it can come back not accurate... so mine came be "indecisive"... so I needed a damned chest Xray to show the test was just off... well I could not again find anyone close that took this stupid insurance, so I finally was just going to pay our Urgent care to have it done. Well, the order got misplaced that my Rheumy sent them..then due to this lump, my Mom, my Aunt passing away, I got delayed in doing the X-ray... so when I went out to have it done last week, they had NO order, or they just could not find it, and when I called and had my Rheumy fax it, it was for 2 views instead of one... so I did not want to have to pay double if it was not necessary, so I had to get hold of my Rheumy... and have them fax a new order for one view... I FINALLY got that done, and now due to the lump, the infection, the delay of the Xray... I've not had any RA meds in like 9 weeks or more!!! So, my RA, is so bad.. And within all of that is even more crap that has and is happening... and I am just frustrated, upset, disgusted, mad, and all the things you feel... it is like some of us NEVER get a break... EVERYTHING in my life has always been "complicated".... and it is just too old... for sure....there are days I want to crawl under my bed to never return.... and between all of that... my Pug has also had stomach problems and been sick to her stomach off and on also....

My Beautiful Daughter, Her awesome Husband and the two Grandsons, family... and also Heather a Senior this year...

I've got to share these pics with you! My daughter, Amanda, and her husband and their two sons, and also they have a daughter who graduates this school year... I have an awesome daughter, an Incredible Son In Law, and three smart and witty Grandkids... fishing, outdoors, hunting, sports, the lake... you name it they all love it!!!

  LOL!!! AND YES, MY DAUGHTER CAN "ROCK" A CAMO SHIRT AND BLACK LACE SHORTS!!!! ;)  

 

They have a blast down by Corpus Christi, at one of the lakes they go to, and all of them love camping, fishing, hunting, and kind of outside sport... I am so thrilled to have them as an awesome "team" as far as my family!

More on the "Abscess, Cellulitis, autoimmune complications, does our water contain something making us sick, Biologicals, stomach upsets, RA, Lupus and when do it EVER END???!

Thanks Denise Tekell and Yes Nancy Hershelman Gipson this "thing" that began as a lump on my thigh has turned into yet another one of my difficult situations, that sometimes even the doctors are not sure the "why", when or how of it all. What makes it worse is that I have not really said much to the doctors that is, about the "lump" on the other thigh... I cannot fathom how I would have "two" abscesses, in almost the same location, yet one on each thigh... unless as I had suspected, it has something to do with my biologic Orencia injections. I take them at just about where these lumps originated. So, some where I have this gut feeling, those needles from that batch of Orencia, were contaminated... I "thought" originally that this one that now has turned into an abscess... I had gotten a very tiny sliver of wood in it. I had a very small kind of gray looking spot come up, that kind of appeared to be like what you see after something such as a splinter gets in to your skin... it seemed to be a tiny bit of trying to get infected... I kept working with it, keeping it clean, and finally I thought got out a very, very tiny almost little sticker out of it. At that time, there was just a very little bit of stuff that was a bit yellow that also came out with it. But, I cleaned it up put Neosporin on it, covered it with a band aid, and in a couple of days, it seemed to close over and be well. It was about 7 days or so before this other "lump" began to form, and it was actually a bit above where that sticker was... not really right on that area. I did not give it much mind, until I noticed not only did the lump get "sore" it was getting larger. By the time I finally decided it needed to be seen about... it was just a lump, no redness or anything visible on the outside of the skin, just the lump that was then about the size of a silver dollar or maybe a bit larger. I went into my PCP, he took one look at it, and knowing my health issues, said it was cellulitis, and he immediately started me on TWO different antibiotics... I found out one for staph and one for strep... which would be the way to do it, especially with my immune system so compromised. ell, I took those for 7 days, and even though it got smaller, it left almost harder, so I called him, and he put me on a 2nd round of the same antibiotics... well 7 days later, the lump did not shrink anymore, plus it began to be sore, to the touch, so I went in that time, he said, of course my immune system still was not able to fight it off enough, so he did one more rounds of the same antibiotics, and said if there was no improvement, he wanted a surgeon to remove that lump and have it tested to see exactly what we were dealing with. Well, I went through hell and back trying to find a surgeon fairly close that took my insurance. I finally did, but he could not see me for like 10 days, and by now the lump began to show OUTER problems, with redness on it, even more sore, and seemed to be almost "swollen" around the lump.. So, that was a week ago last Friday... again I called me PCP told him that now it was showing outward signs of infection, and told him the surgeon would not be able to see him for another week, and I was very concerned... so he put me on one more round of antibiotics until last Friday, when I went to the surgeon. He came in took one look at it, and said it was an "abscess" that needed to be "cut open" to drain, and sure enough, after I almost fainted from the pain of the damned Lidocaine injections to just deaden it, which they hurt and stung like HELL!! Then even with the deadening, I could feel it when he was putting Q-tips inside of that opening to clean out all he could get out... he then proceeded to tell me he was going to "pack" it, and I needed to remove the packing the next day, and at least twice daily remove the bandages, clean it with Q-tips dipped in peroxide and he said I could just put a large band aid on it... on heck no... it is still so sore, I don't dare NOT cover it was gauze pads and medical paper tape... I can have pain with it, just walking, much less if I were to accidentally hit it etc... Of course you saw the photo's I took those yesterday.... and today it almost looks "worse" to be than better... but I really am not sure, so I've been doing exactly as he told me... and it still has a huge hole in there, that is as wide as the top portion of my little finger, and is at least that deep... and the length is almost1 1/2 inches or more... enough that I can get 3 Q-tips or 4 in it at once, and I still almost feel as if I am hitting "bone" at the bottom... I see him Wednesday... to hopefully find out "what" was in it, and maybe why... but also figure out if this other one is the same thing, or something entirely different... Needless to say, between that stupid thing, my Tazz, my Pug has been sick to her stomach, I've had to cut her down to eating a bit of white rice, a bit of yogurt, and drink....and I got sick before going to church yesterday morning and have no cue why... I "felt" fine, I thought, got dressed, did my makeup, had my hair looking okay, and just about 10 minutes before I walked out of the house, it was like my stomach "flipped" 2 or 3 times... and I was running for the bathroom, sick to my stomach, almost got my dress messed up and wound up taking meds for my stomach and staying at home yesterday... in fact I needed to run out quickly, grab some more gauze pads for my leg, and get a "coke" which settles my stomach, and I thought again I was fine, but about the time I was pulling onto my street to get to my house, I almost did not make it.... I ran in and again was sick to my stomach... just insane ... and my Mom has been having the same issues off and on now for weeks too... I've even changed over to bottled purified water for now, thinking it is a bacteria in the water... it can happen this time of year, and in fact there must be something going on with our water... because there was an article in our local paper Saturday, about they were going to do some "testing" and it may have a "bleach type of smell" and for those who put it into medical devices, may want to use bottled water for a few days, like dialysis machines and so forth.... So, now my RA etc is acting up, due to fearing to even attempt to take my Biologic - plus my Rheumy is trying to get me switched over to Xeljanz, so I would not be able to take it and the Orencia... it is just a living hellish nightmare, all ofit....

This is what an "abscess" Looks like on my Thigh! I gather I did have cellulitis and then came the abscess afterward....

Cellulitis? An Abscess? A Boil!!?? What is it, was and what is the difference???

Since I just about "fainted" a few minutes ago, I am making this short... and will give more information either this evening later, or tomorrow. I saw the surgeon yesterday and the "lump" on my leg, after changing from "cellulitis" had actually formed an abscess under the skin. So, he wanted to "open and drain" it... and of course send off some of the infection to find out what caused it. He told me that there was "little"cellulitis left... so I was confused, and came home to read and find the exact differences between an abscess, cellulitis, impetigo, and then you can have an infected hair follicle etc... well, it probably began as "cellulitis" which was infection in the deeper portions of the skin... usually no formation of a "pocket of infection" but an infection spread over an area of the underlying skin. Where the abscess was actually a "pocket" of infection that had to be opened up and drained... Now most of you know I am one tough "cookie" due to the many surgeries, procedures, and so forth I've been through, but this FREAKING HURT!!! When he went in and began to injection the Lidocaine to "numb" the skin, I almost jumped off the table! OMG, it stings anyway, but this was even worse than it going in your upper palate of your mouth for a tooth to be fixed or pulled. It kept jabbing around putting an ass load full of Lidocaine in it, and then of course I was lying down, and he had a drape over my leg, but he "cut" in incision into my thigh. I did not feel much of that, but when he began to go into it with peroxide and Q-tips to clean it out, I wanted again to cry.. Lidocaine or NOT it freaking hurt like hell.... he then "packed" it with gauze and his nurse covered it over with gauze and tape. He asked me if I had someone at home to help clean it out a couple of times a day, and I told him I did not think my pups would be too thrilled - LOL... of course I said I could... yet I still did NOT know the EXTENT of this HOLE in my thigh!!! So, about an hour ago, I knew I had to take the bandages off and clean it out, and then put a band-aid or something to cover it back on....Well, I started to pull all of that gauze off the top and OMG, it was soaked in mess that drained out and blood... then I came to that damned packing... I had to pull that out also... and it was about 25 inches or more LONG.. by the time I got all of it out... also soaked with dry blood and pus that came out of the wound... and then there it is this HUGE HOLE IN MY THIGH!!! It is over 3 inches LONG and about 1 1/2 inches DEEP!!!! Now as I said I am not a cry baby about most stuff... but I had to take Q-Tips and put Peroxide on them and literally go inside of that hole to clean it, and he said to do that at least twice a day!!!! Honestly, I cried while I did it.... So, I do that and he will see me back on Wednesday, and said he should have the results back off the culture... but believe me, I NEVER want to go through this again... and I am not sure even what the heck is up with the lump on the other leg.. I did tell his nurse about it, but he really did not address it, and took care of this one first. I guess time will tell... this other one on my right leg could be nothing, or if it is something then it will certainly show more signs, like getting larger etc.... I thought I would be find one that was done, but believe me... it hurts to even walk on that leg.... so that is my "LABOR DAY" excitement... I hope the rest of the holiday is not like that for sure!!!! When I clean it up later again today, I will try to take a photo of it.... but not sure anyone really wants to see it... I cannot fathom how DEEP and wide it is... just a HOLE, where I guess it "ate away" at the tissues there.... 


http://www.skinsight.com/adult/cellulitis.htm 

21st Century Cures - The Roundtable and UT Southwestern Medical Center!

http://www.newswise.com/articles/u-s-rep-michael-c-burgess-m-d-hosts-roundtable-to-discuss-pivotal-21st-century-cures-act-and-future-of-biomedical-sciencehttp://www.newswise.com/articles/u-s-rep-michael-c-burgess-m-d-hosts-roundtable-to-discuss-pivotal-21st-century-cures-act-and-future-of-biomedical-science

Groundbreaking and exciting News from the 21sr - Century Cures and my Congressman Joe Barton who is a part of the roundtable!

I am also quite partial to SW Med University because my Rheumatologist and Eye Specialist are both there. It is an amazing facility and my Rheumatologist also teaches and does research in the realms of Rheumatoid Arthritis!!!

Pain Pain, and more Chronic Pain - "Legitimate" Pain Patients and "Good" Pain Physicians Suffering from the few who Abuse!

This is a HUGE GROWING Problem for SO MANY of us, with "legitimate" Pain problems. I realize "some" abuse it, but WE as true patients should NOT be punished for those who abuse.... and the ones the at abusing, will find it one way or the other for the most part.... I also feel sorry for the Pain Doctors, that truly are also legitimate... they continue to have more and more hoops to jump through, and put their PATIENTS through.... which is difficult on everyone!

This has always just irritated me to no end, when I read articles, such as this one! We have so MANY "legitimate" pain patients, that would not be able to have ANY QUALITY of LIFE, hence without their medications.

Yet, due to the "few" either "fake patients", or doctors who are not in it, for the REAL Patients, but are in it for their own GREED, have made many of us go through so much paperwork, go through so many questions, go through hoops and hoops in order to receive our medications.

I totally understand "addiction" by those who abuse meds... but, they will abuse, no matter how they get the meds... whether they by them off the streets, or through the black market... they will get them....

Being that is it NATIONAL PAIN AWARENESS MONTH!, I feel even stronger about standing up for everyone who totally is in pain, and like myself, I would never be able to do much of anything if it were not for my medications.... and believe me, I've been with my same Pain Specialist, now for t least 7 years or so, and I have nothing to hide - NEVER have I "ran out of meds early" or lost a prescription, and so forth... never!

Years and Years ago, when they came out with the "Stadol" inhaler, especially for migraines, I had picked one up from the pharmacy on my lunch hour. Well not thinking I left it in my car by accident and it was a very HOT day in Texas.... so the medication "siphoned" itself out of the bottle due to the heat... I was so upset, because I felt like even back then, I may have problems getting my meds. But, I contacted my pharmacist right away, and called my doctor, spoke with them both, I took in the bottle and container it came in, and allowed them to see what had happened. I got another bottle no problem... but in all of my years as a patient with chronic pain, I've seen even myself have issues with either a pharmacist, or one time a doctor be fine and give me my meds, and yet in a month or two, say they can't give that anymore, or change the dose etc... well it is because of being so totally "frightened" by thinking they could lose their medical license, some are just in fear over patients and pain medications.....

Here is the article... and i am sure you will see by what this says... it can mean Disaster for those who DO NOT abuse their meds...









 http://consultqd.clevelandclinic.org/2015/02/heroin-prescription-drug-addiction-a-full-blown-public-health-crisis/?utm_campaign=qd+tweets&utm_medium=social&utm_source=twitter&utm_content=150216+heroin+prescription+drug+addiction+public+health+crisis&dynid=twitter-_-qd+tweets-_-social-_-social-_-150216+heroin+prescription+drug+addiction+public+health+crisis

3rd Day of the 30 day Challenge for the support and promotion of National Pain Awareness Month

I am taking the "30-Day Challenge for pain awareness".... which today is the 3rd day. Yesterday I wore "blue" along with a sign in my car from a photo I made like this one. Today, I am supposed to write down what I would be doing in life if, I was not sick, and have chronic pain issues. Well, first of all, I would probably be doing something in the medical field. I had wanted to be an RN ever since I was in my teens. But, now, if things for me health wise were different, I could see me being a researcher, and doing research on illnesses, such as these autoimmune illnesses, Lupus, RA, Sjogren's, Raynaud's, and so many more, hundreds, and would be trying to find out the "origin" of what causes them that hopefully would lead to a way to stop their progression OR possibly have a way that NO ONE ever had to even have them in the first place. I would be "more active"... going out more, taking my Mom out more... and doing things with friends... right now honestly, I don't have many "friends" as far as here near me... not those that I could go out to dinner, shopping, a movie, or even to the casino with for a day or overnight.... And the reason for that is these illnesses. I never know from one day to the next, if I will wake up feeling "okay" or wake up feeling like as my Dad would have said "pulled thru a knot hole backwards"... LOL... then there are days I wake up fine, but in a few hours I feel horrible, or can feel like hell when I first get up, and within a few hours, feel better... these horrid diseases, which 99% of them include some type of chronic pain, take over your life. Even though many say that can win the battle over them, and I do for the most part, they still have their way of putting you on your butt, even when you try your best to fight against them. I would also already have my 3rd book published, my home would be "more completed" as far as all of the DIY stuff I've started, and some I can't do simply because my health in one way or the other puts a damper on something. We, even myself, before the AI illnesses, took many things for granted... even though I suffered migraines since the age of 17 yrs old, I still could more or less "have a life"... go out, go to college at night, work, do lawn work which I love, and just go do things like shopping or eating out in Dallas, or going down to San Antonio to the River Walk for a weekend... now those things are either almost impossible, OR they are a bit more difficult for me to plan to be able to do... just the stuff here at my house, painting, laying the floors in my kitchen, bath finishing out the walls in my bath, and wiring the lights in, and things like that, some I can do, and others my body no longer allows me to handle. So, a "new normal" (which by the way is kind of one of my "mantra's".... would be to enjoy and do, all of the simple things I used to be able to do, and now I realize that my life has totally turned around and what was "normal" just a few years ago, is certainly not anymore.... 

If you would like to participate in the Challenge Or just find ways to promote "Pain Awareness Month" you can go to :

http://uspainfoundation.org/30daychallenge.html

And do your own challenge or find ways you can let others know about just how much chronic pain can change your quality of life....


#ITookThePledge  Twitter

WEGO Announces - The 1ST Annual RA Blog Week coming up the week of September 21 - thru September 27!

WEGO Health and the very 1st Annual RA Blog Week!

To find out more about how to participate and have your blog included see the URL:

http://www.radiabetes.com/leading-prompts-for-rablog-week-as-of-august-18-2015/

Here is more information about RA Blog Week!

http://www.radiabetes.com/home/rablog-week-white-paper/

This is such an honor! A great way to help others, and find out more about others also!!!!

About #RABlog Week

About #RABlog Week