"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Monday, September 7, 2015
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!!!
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....
Sunday, September 6, 2015
Saturday, September 5, 2015
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
http://www.skinsight.com/adult/cellulitis.htm
Thursday, September 3, 2015
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
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
Tuesday, September 1, 2015
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:
Here is more information about RA Blog Week!
This is such an honor! A great way to help others, and find out more about others also!!!!
About #RABlog Week
It is OFFICIALLY September 1st, National Pain Awareness Month 2015 begins.....
Morning everyone here at my FB "family"... It often feels more like "family" at times when I come to my page here, along with my blog. There are several of us, that find comfort in one another, especially when the "storms if pain, illness, and life" begin to be overwhelming. For myself, this entire year so far, has not "turned out" at ALL like I had "planned"... Of course I should already know, after 55 years of living, that "Rhia's Law" is that if it will be COMPLICATED, COMPLEX, CONFUSING, FULL OF DRAMA AND STRESS, DIFFICULT.. just to name a "few" of my thoughts, it shall be happening to ME. Nothing ever comes easy for me... as much as I would love it to, and I've often wondered why, life has to be so darned complicated - as all of us with any type of chronic illness and/or chronic pain, "Living Life" is never "easy"... we battle with illness and pain, we battle with medications, doctors, pharmacies and most of all insurance. We battle just to get up every morning, and try to be our best, whether that means sitting on the sofa all day, being in bed all day, or up and about with errands, work, and the other daily things we accomplish in life. I had just been reading in a local small magazine that usually continues interesting information about our doctors, or different places here involving health... therapy, gyms, alternative medical practices, and the like. They also usually focus on the local people, that either have a beautiful home, like something that may be in the "Historical District" or a new group for different types of illnesses... one such here I was just reading about is Parkinson's. Now even though we are educated about many different ailments, we sometimes tend to think that diseases like, Parkinson's, Dementia, Alzheimer's, arthritis, just to mane a few, are "elderly folks diseases"... yet, right here in our community. One of the reasons why I decided that I wanted to participate in US Pain Foundations, "Beautify in Blue" campaigns here in my home town, is exactly what I have wanted to do for a long while now, with Lupus, RA, Sjogren's, and those living in chronic pain... to begin to educate people here, to bring more awareness, rather than rumors, or misinformation when it comes to any type of severe disease that is all too often "chronic" in nature, and it envelopes and takes away the "life" that you thought you would have. When I began years ago having very severe migraine headaches, there are not a great deal known about them. The doctors for the most part, would either not really know what to do, or give you pain meds... that later ma have been considered "habit forming" and such. But, I worked MANY years at several different jobs, and in one way or the other, the migraines interfered with my job and my life. I wanted to be a nurse, and had my sites on that profession for many years. Yet, when I finally had that opportunity, the headaches would have been an interference in my schooling. So, as badly as I wanted to pursue that career, I knew it was not in the cards for me. I did go to college mainly during the evenings, after work, and got my AD, and the most proud moment is when I was inducted into the "National Phi Theta Kappa Honor Society at the college I attended. I of course still have my lapel pin, and even had special lettering made and put it in my car back glass... I was so thrilled.
But, I still fought around the damned headaches... then new medications came out, none of which I could take, or they simply did NOT work... I always tell this one story, I had to go to the ER one night with a really bad migraine. It had been going on for days, and I just could not get it to "cease and desist" ... the ER doctor, I think rather than giving me what they usually did, decided to give me "Compazine". Well, this nurse came in with a pretty large syringe of medication that I believe was to go into the IV they had started... It did not take long, and I began to feel "odd"... it was just not working at all in fact, and I just felt like I was going "nuts"... so rather than the doctor trying something else, he told her to give me yet another round of it... I literally got up, pulled the IV out of my arm, wrapped it up to stop the bleeding and I left... I was having some kind of horrible reaction to that medication, it was NOT working, and I certainly did not need anymore.... So, those types of events in our lives, makes us want to stand up for not just ourselves but others just as we are... ILL and yet some physicians just DO NOT either listen, or they prefer the patient to be quiet, or there is just too much misinformation being spread around.... SO, TODAY and for the next 30 DAYS I hope you join all of us in promoting the correct information and awareness about Chronic Pain....
Take The 30 Day Challenge by the US Pain Foundataion
Monday, August 31, 2015
IFAA - Register to Walk! Physically or Virtuallly!! You Can Join in!
Who out there lives in or near (or will be in) NYC on September 20th, 2015?
There is a great event that day hosted by American Autoimmune Related Diseases Association (AARDA) to raise awareness about autoimmune disease. International Foundation for Autoimmune Arthritis, official hosts and event coordinators of World Autoimmune Arthritis Day, is attending to support the event and to raise awareness about a much needed AARDA program "ARNet" (Autoimmune Registry Network).
If you will be in NYC on September 20th please sign up to join the IFAA Buttahflies and meet IFAA Executive Assistant, Kerry Wong and other IFAA Representatives. Sign up by yourself or with family and friends but sign up if you care about autoimmune arthritis awareness and have a fun day with IFAA and AARDA!
http:// www.ifautoimmunearthritis.o rg/upcoming-events.html
There is a great event that day hosted by American Autoimmune Related Diseases Association (AARDA) to raise awareness about autoimmune disease. International Foundation for Autoimmune Arthritis, official hosts and event coordinators of World Autoimmune Arthritis Day, is attending to support the event and to raise awareness about a much needed AARDA program "ARNet" (Autoimmune Registry Network).
If you will be in NYC on September 20th please sign up to join the IFAA Buttahflies and meet IFAA Executive Assistant, Kerry Wong and other IFAA Representatives. Sign up by yourself or with family and friends but sign up if you care about autoimmune arthritis awareness and have a fun day with IFAA and AARDA!
http://
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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 abo...
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How can our kids feel safe when WE as adults don't???? I fear Wal-Mart or just walking across the parking lot at HEB in my small lo...
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I finally made a trip to Urgent Care with what I feel is a very bad Lupus and RA flare, but there are several "symptoms" strange t...