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....

How to React to an "invisible bacteria" invading your body, when Autoimmune Diseases are involved & how do you know when you are "well"?

Good question! For myself, YES, it is!  Whether it is a "missing" bone out of my spine, that was found after 55 years of life, or an unusual "lump" on the top of my let thigh, my entire "medical" life always evolves around being unusual, unique, complicated, complex, and some doctors almost "fear" having to treat me at times.

We all in the world now share an added sense of "something is worse now" than 20 years ago. Bacteria now that invades our bodies have mutated and changed so much, many of the well known medications to treat these bacterial infections no longer are able to do so. I found that over the years our bodies do have an extremely interesting way they fight certain things... like this lump on the top of my left thing. IT is my own immune system although compromised, that began getting that infection "rounded up" an circled to push it into this lump, in order to try and stop it from spreading more. So even with a body and immune system that tends to not work properly at times, I still have enough of my immunity, that the body tries its best to fend off the bacteria, thus the "lump" under my skin is cellulitis. But, unless you know about it, or it breaks to the outer skin, it can go possibly not noticed. Of course when the lump came up and began to grow so quickly I knew there was something very wrong.

things with myself and my Mom are just insane. Between my own needing for back surgery, and now to find out my Mom, who we thought has a hip problem, find out it is also her lumbar spine and arthritis. So, between running to doctors, to therapy, for tests, some local and some in Dallas, and then me to come down with the cellulitis, plus I have not even gotten the chest X-ray so I can go on Xeljanz. My "TB" blood test came back "inconclusive" but they feel it is because it did not get tested quickly enough, thus that happens. But, until I have the X-ray, my insurance will not approve the medication.

Of course the sweltering temperatures are not helping... we are under a heat warning for at least the next 5 days and more... looking at temps above 105 plus the heat indeces bringing it up to 110 and above at times...

Things are just a mess right now and I am about ready to throw in the towel, throw my hands up, and then hide under the bed for the next month or so... Gosh knows when it rains it pours... and my doctors all agree, I am a "complex and complicated" patient... YA THINK???

I apologize for not posting more here, but due to my health issues and then all of Mom's things, I have really not been able to sit here for very long to post... I decided I did need to come in and post a few things and share why I have been "lax" in my postings lately....

Here are a few links also I want to share with you...

http://blog.arthritis.org/stories-of-yes/miss-teen-minnesota-juvenile-arthritis/

http://www.lupusresearchinstitute.org/lupus-facts/fight-lupus/lupus-and-your-skin


http://www.lupus.org/general-news/entry/statement-on-the-results-of-epratuzumab-study-for-the-treatment-of-lupus


http://blog.arthritis.org/living-with-arthritis/omega-3-fatty-acids-arthritis/?utm_source=facebook

By the way, talking about "Fish oil" and such especially for your pets, dogs in particular, I had a friend tell me about her dog, who was very, very old and had severe issues with joints. She had put her on "Canna - Pet" which is "industrial hemp powder".... I tried it for Tazz a couple of months... and it just helped her immensely. I was so surprised and thrilled. BUT I was NOT thrilled with the PRICE! The stuff is like $30.00 for a month's supply. In fact, it would be 60.00 a month if you gave them 2 a day... anyway, I did my own research on this "hemp powder" and began to find that there are many "humans" that use it for all types of problems. Especially joint pain, and inflammation... even allergies and so forth. So, I looked on Amazon and found a bottle of "100% hemp powder".... and this has NO THC or whatever the initials are for what is in cannabis that humans use to smoke... it contains none of that... so there is no "high" anyone would get, and it would never show up in the bloodstream or urine. So, I ordered a fairly large canister full at about $10.00. Well, the price right there was much better, but I was not sure how well it would work... It works just as well if not better than those capsules, costs a heck of a lot less, and both dogs even like the taste of it. I can take a treat, or a piece of fresh fruit etc... and roll it in the powder and they just love the flavor. So, I've been giving it to them every morning, and then I put a bit on their food.... I can see both of them up playing, and doing things that before they just almost could not do, especially Tazzy.... I wanted to share this with all of you, and also the fish oil they love too. I feared they might eat their food, but they eat better with the fish oil on it.... LOL!!!! Anyway, a bit of information for some of you..


http://www.medpagetoday.com/Rheumatology/Lupus/52814


Lots of great news above... from information about Fish oil and its benefits, to a new Lupus medication on the horizon, Miss Teen who has made her dreams come true in spite of fighting Juvenile Arthritis, and more... I think you will like reading these...

http://www.ucb.com/presscenter/News/article/UCB-announces-Phase-3-clinical-trial-program-for-epratuzumab-in-Systemic-Lupus-Erythematosus-did-not-meet-primary-endpoint-nbsp

Autoimmune Illnesses - Does Illness, Doctors, Tests, Treatments and Medications EVER END???!!! I am just totally wiped out.... A Week from Hades for sure!

Does it ever end? I DID get a new rug cleaner, and even got an extra $10 coupon off of it, so I have it at home, out of the box, and trying to get the "opt" piece to line up and then there are 2 screws to put in once it is all lined up. I was just too tired, too aggravated, feeling just sick, after an all day of running again yesterday. So, I DID GO TO THE DOCTOR yesterday!!!!!! I called and they told my doctor what was going on and he wanted to see me at 11:30 yesterday morning. I had already felt like something was not right about this growing "lump" on the top of my left thigh. It began getting larger almost each day. And it is about the size of a silver dollar or maybe larger. Sure enough, I have cellulitis. NOT GOOD! If I had not went in when I did, I may have found myself as an inpatient on IV antibiotics over the weekend. He said that he was giving me two different antibiotics, both very strong and in fact one of them they actually use for certain types of Tuberculosis. (interesting since I still need to get that Chest X-ray) and have NOT found time to get it yet! So, after I saw him, I had already been to Wally World and got the rug cleaner, and then I went by Mom's. Well, of course she had not picked up her meds yet, so I had to go get mine, one of them my pharmacy did not have and was not going to have it until Monday.... and it was one of the antibiotics, so I did not want to go without it if possible. So, I went across the street to pick up Mom's scripts, and I happen to have a copy of the prescriptions. They did have enough of the other antibiotic, so I asked them to fill it and I would pick it up in an hour or so... so I visited with Mom, explained her meds, and left to go pick up mine. Then I came home and was just exhausted. It was already something like 4:00 PM and again I had been "running" since about 6 that morning. So, I changed clothes took the medication and got on the sofa with the pups. But, I was just restless and honestly really concerned about this cellulitis mess. That lump has already been there about 4 weeks, maybe longer. So, it really worries me since it can turn bad very quickly, especially when we are immune compromised. I want to use my new carpet cleaner, but my stomach is just YUCK! I think it is the antibiotics. I have a billion things to catch up on.... here at home, online, and then I have 3 days of PT for Mom next week, plus I need to schedule the MRI for her, and then they called about the ESI (Epidural Steroid Injections) already and want me to call them back Monday to schedule those. So, I am not sure if the doctor wants the MRI first, or if he wants to go ahead with the injections.... but that means a possibility of either having a test or going to a medical "something" everyday next week! Plus I have not even had the time, nor the energy to go and have that damned chest X=ray yet. So, I am exhausted to the bone today, and feel like hell. Keep Mom in your thoughts and prayers... she seemed to be better yesterday, but we all know with especially "back pain" one moment you can be fine, and the next in almost unbeatable pain... so one day of feeling good certainly does not constitute it is over yet. I am going to try and stay online this morning and catch up on a few things. But, I will see how I feel. Right now I hurt all over and as I said, I have to take those antibiotics on an "empty" stomach of all things.... as if they are not bad enough to take with food.... I wish everyone a good weekend.... and I will be "around" off and on, just depending on how I feel. and by the way, THE MAYOR SIGNED THE SEPTEMBER 2015 PAIN AWARENESS PROCLAMATION!! I GOT IT in the mail yesterday... BUT they must have not let the ink dry enough before sticking it in the envelope, and a couple of the letters on a couple of words have been pulled away.... so. I am not sure even trying to "go over" those can fix it... I may have to have the woman that did it, redo it and send me another one. I hate to but I've tried to kind of go over them and it just looks horrible. I may try to scan it in, match the typeset and "fix" it in Photoshop if I can... I shall see.....

The Arthritis Foundation - Becoming an "E-Advocate" and How YOUR VOICE DOES MATTER!!! YOU CAN make a DIFFERENCE!!!

As we begin a Brand New Year with New Congress Members of our 114th Congress officially now in. We want to further our cause on the issues surrounding Advocacy for Arthritis - Ra and Osteo, plus Juvenile Arthritis. I would love for you to joint MANY others around our nation in support by being an "E-Advocate" for the Arthritis Foundation. You never have to leave home, and your input can mean SO MUCH when it comes to legislation about health, from medications and the "tier" programs, to making Medicare sustainable, to giving out funding for so much needed research in order to give "a quality of life" back to the hundreds of thousands of women, men and children that suffer from these horrid diseases. I am including a link to the page where you can sign up and also read more about being an "E-Advocate". My emphasis on "YOU MAKING A DIFFERENCE" is critical. Because I used to think probably what you sometimes think "Oh, how can I, one voice make a difference?" Well, I can tell you from personal experience that YOUR VOICE can move mountains. Also, your members of Congress DO HEAR YOU! So, you helping to send your opinions and how you feel on health matters - does matter! I urge you and I know many of you have a "full time" plate, of family, children, jobs, and living, and also many of you are dealing like myself, with chronic illnesses like RA, Osteoarthritis, JRA and many other illnesses very much related to these... whether it be other Autoimmune Illnesses, such as Lupus, Sjogren's, MS, Myasthenia Gravis, MCTD and the hundreds more (I met a woman yesterday who is a lab tech and drew my blood for some lab work - finding out she also has an autoimmune illness - at 25 she suffers from Diabetes 1) ... so "we" are out there... and finding your "niche" where your voice can be heard is an incredible thing to do. I can say without any hesitation that my advocacy with AF, IFAA/IAAM, Lupus Foundation, WEGO Health, my "consumer reviewer" with the DOD I served as last year, my trip to D.C. with the A.F., my work I did with IFAA and all they continue to achieve is just almost mind boggling, my blog, my writing, my Facebook posts, as well as groups... and then illnesses such as FM/CFS/ME (that I continue to feel are all autoimmune related illnesses) .... and so much more... being a judge for WEGO Health Activist Awards, getting to tell my story on Capitol Hill last year and then again a couple of times in the year to my Congressional Representative and my Senators.... and now I would like to further my own Advocacy in my State... I feel it is crucial that we make headway in Texas on a State Level of our Government with these illnesses. It means getting our State Congress on board, and even down to our County and Town people in positions of government, all instrumental in making great things happen when it comes to health care, medications, research, and healing those who truly would love to have another "normal" day in their lives... most of us wished we could gain just a portion of our "quality of life back"... and that in itself would mean the moon and stars to so many of us... as patients, as caretakers, as family, friends and often even our medical providers. They would like to have more options to address our every growing and changing autoimmune illnesses, chronic pain patients, those of us that our joints just deteriorate and often there may not be a "good" explanation as to why... yet they would love to be able to know themselves and to be able to tell patients the "why's" and "how to" fix them. After the numerous surgeries I've been through, more than I can count on BOTH hands... I can say, that the thought of having to undergo another surgery honestly scares the hell out of me... even the idea of being ill enough that I may need to be hospitalized terrifies me. Each night I pray that I will NOT be ill, especially never again so ill, I must undergo a hospital stay. After knowing what I know, and then watching an hour documentary just yesterday, on just how many "Superbugs" there are just lingering around every nook and cranny of a hospital, it terrifies the hell out of me.... With an already very compromised immune system... with illness, and then even more compromised due to medications, the idea of going into the hospital already ill, and hoping I don't become even worse in there than before I went in... just puts me in a place of mortal terror. The last bout I had with double pneumonia, and had a fever so high for me at 103 degrees that I was literally hallucinating, could not type, could not walk straight, could not see... and if I had not finally figured out to check my temperature, at the time Jim was still in the hospital, so alone it really didn't dawn on me.... then seeing how high my temp was, and in so bad of shape I did not even trust myself to drive alone.... it really was yet another eye opening experience for me. I got by the "skin of my teeth" from being hospitalized. Because my temp was not going down initially even with Aspirin, Tylenol, and so forth... and having it in both lungs... I convinced the physician at the Urgent Care (he also is an ER doctor at our local hospital) and I knew him... to allow me to go home first, and see how I was in 24 hours with medications... he still was almost to the point of sending me via ambulance to the ER... but I swore to follow his rules, and if the fever got any higher, or I became more ill, I would immediately dial 911 and go to the ER... thus I avoided that one. But, here I am already a compromised immune system, Jim had then been in the hospital about 3 weeks out from the accident... he still was so out of it, he was not able to truly grasp the idea that I was so ill I could not at all come up to see him... and for a full 10 days, I stayed HOME, on the sofa, taking my meds and doing exactly as the doctor told me. The very last place in the world I needed to be was in the hospital myself. So, as I tell my own dilemma from 2014, my point is that STILL when I could even through the entire ordeal with Jim's accident, my own illnesses, then the whole situation with the Sjogren's and my teeth literally falling out weekly, then getting Jim home, to proper doctors, getting medications, finding how the hell to survive the ever growing costs of meds, doctors, since there is NOTHING to pay any of it but us.... to my own issues with all of the dental bills also NOT COVERED... and fighting (no pun intended) tooth and nail for Humana to freaking pay... IT WAS AN ILLNESS that TOTALED MY TEETH, not a "DENTAL" problem... and the vicious cycle and circle carries on. So MY FIGHT is the "good fight" for ALL of us... it is time to put the USA on the World MAP as being a "premier" nation that DOES FIND CURES or WAYS TO PUT THESE HORRENDOUS ILLNESSES INTO REMISSION... to stop the damage they cause.... and we NEED YOU... and your voice also.....

http://www.arthritis.org/advocate/join-the-movement/sign-up-to-be-an-e-advocate.php#