Orencia - CELLULITIS - and other known biologic medications, for RA, Lupus and other Autoimmune Diseases"....

OF course all of us know that "biologics" in total can cause infections, cancer, especially lymphoma, TB, and other some "serious" side effects. But, I NEVER have had "CELLULITIS" before in my life. I "thought" originally this cellulitis on my left thigh (top) was from possibly a sliver of tree bark that I thought happened about 8 weeks ago or so while I was cutting some branches up. But, the more I think about it, the more I "see" that both thighs at that particular place is where I usually take my Orencia Injections. It is so happens, about 3 day ago or so, I noticed a "small" (like possibly pea size) "lump" on my right thigh almost in the same spot. Of course it could be any number of things, but I am beginning to wonder if the injection type of Orencia that I had in that last "box" may have no been contaminated... because having "bacteria" on the skin OR on the needle in itself, can of course cause cellulitis... and the "medication" in itself, can also cause it also. I am almost "overly" cautious when it comes to my weekly injections. I use a couple of alcohol preps, wash my hands first with antibacterial hand soap, then make sure I clean the skin well around and out from where I put the medication. Yet, I am leaning towards the possibility of the "injection" needle in itself as I said above possibly being "contaminated"... anyway, the huge lump is definitely going down now. It is now about the size of a "little smokie" LOL... or I guess the very top portion of my thumb to the first knuckle size approximately. NOW though, after having the severe intestinal issues with the antibiotic I had here, while waiting on the doctor over last weekend to call me in the two for a 2nd round, which is Omnicef, that is the culprit of causing me to have SEVERE problems with not being able to "keep" anything in my digestive tract. I FINALLY thought I had the "gripes" I think as it can also be called, have basically stopped (I pray) BUT I woke up very nauseated this morning. I took some of my meds for it, and thought I would be okay in a bit... but a bit earlier I began to be sick to my stomach and was "throwing up" and all I had at the time in my stomach was some green tea iced... so if it is NOT "ONE" end, it's the other... Gosh I am so sick and tired of being so SICK< SICK< SICK!!!!  Anyway, I am trying to get myself back on schedule with everything, but getting so nauseated this morning put another damper on my schedule returning to whatever "normal" is for me.... If YOU or ANYONE you may have heard talk about getting "CELLULITIS" from "Orencia" or another biologic, please post and let me know... I would like to see if there are others here that may have had the same type of issue...

US Pain Foundation September Pain Awareness Month & our Local Mayor signs Proclamation & is allowing me to do the "Beautify in Blue" Campaign for Pain Awareness!

I am totally psyched over our city Mayor signing the Pain Awareness Proclamation for September! Also, they are allowing me to set up the ribbons, signs and so forth for the "Beautify in Blue" campaign by the US Pain Foundation! I am so elated to be able to bring this "home" as far as awareness about chronic pain, and just how much it effects so many people's lives... and so forth. The city has just been very receptive in helping me, so that makes it even better! Here is a pic of the signed Proclamation!

Trying something new - A "daily" Online "Paper" about Autoimmune Illnesses, Writing, Chronic Pain, Family, Coping, Surgeries & more

https://paper.li/ravishingrhia/1438808814#

Autoimmune Arthritic Systemic Life Daily – Rhia

 

A "Daily online Newspaper"  I am "Customizing"  for my own interests, advocacy, activism,Ambassadors, Illnesses, Family and Coping...

This is new for me.. not sure if I will keep it.. it depends upon time, and all in between. I don't want to begin yet another "tool" since I really need to put my efforts into finishing my 3rd book and my blog, advocacy etc. But I thought for the moment I might give this a try.

Life with Autoimmune Illnesses, Lupus... back sugery, dealing with chronic pain, US Pain Foundation and September Pain Awareness Month, Proclamation, family and coping

Things here are still really insane... it "seems" that my intestinal tract "maybe" improving... I hate to say that and jinx myself... but yesterday and last night and so far this morning it is much better than a week ago... but I still have Mom and her injections to deal with, I still need to get the chest X-ray.. I hope and pray that is 2nd round of antibiotics will completely rid me of the cellulitis... I found another "lump" on my right thigh a couple of days ago, and I was praying it was not more - but I am on the Rifampin and the other one (can't think of the name of the moment) LOL.. but between lack of sleep for nights and nights... and the heat, and stress, worry... my mind is about null and void anyway... Good news!! I am okay for the City Of Ennis to go ahead with the National Pain Awareness Campaign in September "Beautify in Blue"!!! Our Mayor signed the proclamation, and the man that I needed to speak with about signs, ribbons and so forth told me it was fine to go ahead and put those up for next month!! I am truly thrilled to be able to get "my home community" involved in this... even he said he suffers from migraines... so he totally gets chronic pain... I will keep you informed, make photos and post them etc as I get the stuff and get it up here in town... other than that, I HAVE TO GET WELL so I can have this back surgery... I will more than likely switch Medicare Plans for next year and that probably means I could lose my surgeon, so I have to get it done before the end of the year... all of that has been a nightmare also... to find out that my own HOSPITAL does NOT take the Medicare Advantage Plan, after I was told they did... but it is a huge ordeal and AARP should be ashamed of themselves for even sponsoring Untied Healthcare and what they have pulled on their clients... it is all over the internet how they have really messed so many of us up on our providers... I am still very concerned about Mom and all of the "memory" issues and things I've seen over the past several weeks... although I know from experience, lack of sleep, pain, new medications, stress can all be huge factors in our memories etc - it seems to be over and above all of that... anyway, I am playing catch up after being ill for so long and I am still not at my best (whatever that is anymore ) ;) just wanted to touch base with everyone and let you know I am still "alive" and not really "kicking" at the moment...

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

"Cure Click" and a Few Informative Items

 

Trying to find "balance" between being a "Patient" and a "Caretaker"... a writer, a blogger, an Author, an activist, an Ambassador... and battling Lupus, RA, Sjogren's, Lumbar spine problems and chronic pain

I WILL BE SO GLAD WHEN THIS WEEK IS OVER!!!!!!!!!! I has been something everyday this week and today once again. AT noon Mom has an MRI on her lumbar spine. She HATES MRI's because of like many of us the noise and being so confined & be still... so I hope she makes it through okay. They did tell me that there is a doctor there at all times, & if a patient is extremely anxious, he can administer a really light sedative just to make them feel a bit more calm... where was that the last MRI I had??? I am not "fussing" about helping Mom out at all. That is not the meaning of this post. I know for her it is very difficult to go through all of this. In fact she missed PT yesterday.  Even though she has the schedule hanging right up on her calendar, she got confused I guess, so I went at 1:45 to pick her up, and she was not ready..... and when I said something about PT, she said today?? I said yes  - Mon. Wed and Fri.... all of this along with the medication I think the pain doctor gave her to take at bedtime so she can sleep, (she had not been sleeping due to the pain for weeks) it may have her a bit confused. She so rarely takes anything but basically blood pressure meds, potassium, Lasix, and Crestor... so having other meds in her system, I think has her kind of fuzzy.... hell I am FUZZY MINDED ALL THE TIME (LOL)!!!! Anyway she does know I am picking her up at noon today for the MRI... and then tomorrow she goes for the PT again. What I am seeing and thinking, if she goes a couple more times to PT, just about all they are doing for her, and some of it she is doing at home a couple of times a day anyway, she could probably go twice a week, and be fine. She can do the rest of it at home... and I do know she has been doing the exercises they showed her... I think that in itself, just not having to run out 3 times a week in this horrible heat, may help some. It is honestly so danged hot here, and we have a butt load of humidity to make things worse... I can't even stand in my kitchen giving the dogs their medications without sweating... insane. I have been turning the A/C off early when I first get up, then back on about 11 am or so, but I went and turned it on the "humidity" setting for now to dry out this "sticky, damp" feeling.... anyway, things here are nuts... I take my last round of antibiotics today for the cellulitis.... but the lump is not gone... so I am not sure if that is okay and the medications will continue on to work to get rid of it, or if it will just be a lump there for awhile, OR if I need more antibiotics.... I HOPE NOT the 3rd! They have really put me into one helluva tail spin with my stomach. Plus make me feel so tired and fatigued... on top of what my usual is, and I am just drained about all of it, but I don't want to wind up in the hospital either.. Mom will go in for the injections once the MRI is done and our pain doctor has the results. I figure sometimes next week, which will mean a VERY EARLY trip to Dallas, and way up Central Expressway to a surgery center on Greenville Avenue... so I don't look forward to that one either. I've just made this trip myself for my injections, and then the discogram a few weeks back... so once again, off to Dallas...

I am still quite puzzled as to why after all of the MRI's, CT's, X-rays, and tests on my lower back all these years, that not one test ever showed me missing the "lamina" that I was born without.... I've always said I don't think some of these scans and so forth are nearly as accurate at times... I can't think of one of them that was very accurate on me.... every time I've had a surgery, once the surgeon is actually looking inside, there has been a great deal more damage than what any "scan" ever would show.... even with my neck surgery, shoulder... knees... any of them... in fact I believe it was my cervical spine, the severe damage was in a "hidden" spot that the CT could not pick up from my understanding... so that makes me wonder how many of us suffer and doctors do these tests, and they don't look so bad, so they think we are just "making it up"... or it is not bad enough to warrant surgery and so forth. I have certainly fought with one doctor for 2 YEARS before they finally fixed my left elbow. I had about 19 steroid injections in it, before I found a doctor that did surgery right away, and sure enough the tests didn't show all of the damage....

I've also now am having issues with my right hand and fingers worse, but both hands and fingers. I've got swelling that is usually not where it is now, and I can barely stand to type for very long, and they hurt almost all the time. Always something... so to all have a good day.... I've got to do a few more things and then get ready to take Mom for the MRI.... more to come

"I feel as if I should have a full-time TV "Reality Show".... called "Chronic Illness/Pain patient - Caregiver This is MY LIFE! REALLY!

Lupus Patients in the Hospital and Infections on the Rise....

I certainly find this very frightening... Since I have "cellulitis" which I am still not so sure may land me in the hospital on IV antibiotics, plus I need to get my back surgery... even thinking about having Lupus, RA, Sjogren's and other autoimmune "compromised" issues... this is something we should ALL take into consideration. Now I feel we ALL need to be very proactive when we must be in the hospital, clinics, have surgery and so forth... we know that the "antibiotic resistant" bacteria's are out there and prevalent. Never would I have thought I would get cellulitis... yet I went in due to this "lump" on my top thigh... just in time before I did have to be admitted and given IV antibiotics... and even now, I've been on the two different ones now for 5 days... and this lump may have went down a tiny bit, but it is still there... so infections as even with my own personal experience as nothing to put off, and even more difficult to try and avoid...


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

Not my "usual" type of Post but I feel I it's a very important one... When Government, Big Pharma,Medications for "Chronic" Illness/Pain play a hand in your treatments

As I've said in Facebook about this post I am putting up now, I almost NEVER talk about anything "political" or "religious" on FB nor here on my blog.

Not that both subjects are a very important portion in my life, but it is more about how "personal" and private those subjects are to many of us. Not that I don't share some things "religious"... in fact I just posted over the last two weeks, that I have decided I needed to step back into fellowship on Sundays with one of our local churches.

I had talked about being raised kind of "Catholic" and "Baptist". My Mom was Catholic and came from a Czech background. So, when I would visit my Grandparents or go stay over the weekend with some cousins, I usually went on Sunday's to church with them.

My Dad was Baptist. He in fact was one of the "founding" members of the church that is way less than a block from my parents home, and through the years, for the most part that was where he was on Sunday mornings. I went with him many Sundays, in fact probably any time I was at home on Sunday morning, I went with Dad to that church. So, I had "leaned" towards being "Baptist" most of my Adult life, although I don't like to judge anyone else's faith. Faith, Hope, Praise, Glory... all words we so need in the days we face ahead, as a country, as a nation, and as a World.

Anyway, to finish that piece, I went this past two Sundays to one of our Methodist Churches and really enjoyed it. I feel I maybe going back and am even thinking about getting involved in own of the Sunday School classes where I would "belong"....

And as far as "government" actually I speak OUT a GREAT DEAL about our Governmental bodies, both House and Senate. When it comes to anything to do with chronic illnesses, arthritis, RA, Sjogren's,

https://www.youtube.com/watch?v=xLx8bLeDdJs&feature=youtu.be

Since any of these chronic illnesses lead to disability, to losing relationships. to causing severe pain, from physical, mental and emotional... we do not have near enough "research", medications, treatments, and the list of the needs when it comes to these most complex and complicated often almost "invisible" diseases, it MUST be that our government helps to play a role in getting many more specialists, more INSURANCE that COVERS treatments, rather than "denies" every claim. It is NOT the patients fault we are ill. It is also NOT our fault that the medications for some of these are astronomical. We are not the ones who "dictate" these costs. Yet, every day you see yet another new "medication" on the market for Lupus, RA, Diabetes, and so on and so forth... with the costs so expensive there is no way a patient can afford to pay for some medication that is 2,000.00 and MUCH MORE for a MONTH"S worth. I was looking at my medications (that happen to be MANY) due to Lupus, RA, Sjogren's, chronic pain, heart problems, and so forth. If I had to PAY out of my pocket for any of them... I surely would NOT be able to do that at all. So, where do you turn? You need these medications to "give you your quality of Life"... yet there is no quality of life if YOU ARE GOING BROKE to pay for your treatments.


I plan on adding more to this, but for now I want to get it posted.... so more to come on this subject...

Even though Dealing with Autoimmune diseases, Chronic Illness and/or Chronic Pain, every once in a while it is OKAY to find some humor in life.....

Some of you may recognize this as soon as you see it. If you are a fan of a late night television show, then I am sure you will.

Plus if you were "born" in the era of a certain band, that had a couple of huge hits, you may also recognize this also.

Actually, right now I am in such "blah" (for lack of a better word) mood right now.

I found out that this "lump" on my left top thigh, was NOT just any old lump. I have cellulitis and that is why I have it there. I had been out about 6 weeks ago or so, cutting up some tree limbs, after all of the wind, rains etc... earlier in the spring, and putting them in a trash bin, so they could be gotten rid of. Well, I never really "felt" anything but I must have accidentally brushed my thigh against one of the limbs, and a very tiny piece, just a sliver of "bark" I think must have been just like a "sticker" or splinter and was in my thigh. A couple of days later, I noticed a red spot there, and it was kind of sore, so I was watching it, putting antibiotic cream on it, and keeping it covered. I just thought I scratched my leg doing something, I did not know at the time something was "in it".... but then I did see several days later, it looked like it has a bit of infection in it... just maybe the size of a head of a match, so I cleaned around it, and was able to kind of push around the outside of the place, and I saw this tiny piece of something come out of it. And also there was a tiny bit of yellow, but it was really nothing I considered to be horribly bad. I kept cleaning it, and squeezing around it, and for a couple of days, again, I might get 4 or 5 drops of what may have been a bit of infection out of it. But, then it began to seal itself over, and I no longer seen anything red, or warm, or looked like possibly more infection. So, I went on about my life, and really didn't even think much about it at all.

Then, it must have been about 7 to 10 days later, I was doing something and brushed against my thigh, and I noticed a small "lump" kind of about where that place has healed over. It did not appear like there was infection, not warm, not red, just a small lump under the skin. Well, as the days went by, I began to notice it was getting a bit larger. I still really never gave it that much thought, and in fact I figured with the way my body reacts with my autoimmune issues and illnesses, that it formed kind of a scar tissue under the skin. Yet, I continued to notice, that lump was growing, and when I decided to have it looked at, it was about the size of a silver dollar. It was not "soft", but kind of hard. It is sore to the touch, and as it got larger I noticed it would hurt a bit when I walked. So Friday, after doing some "google" searching, I kind of got concerned. More about the possibility of it being some type of cancer actually. From some of the different searches and sites I went to, all too often I noticed there might be someone who does get a piece of sticker, or glass etc in a foot and so forth, and after that heals suddenly a lump appears and it is cancer.

That is when I put the two and two together, and knew that lump had to be due to the sliver of whatever was in my thigh. OF course I have heard of cellulitis and was more familiar with it, in those with Diabetes. I knew that pretty often due to their sometimes not healing over quickly enough and also being a bit immune compromised, especially their feet and legs if injured can quickly turn into cellulitis, and even worse.


But, I guess my conception of "cellulitis" was more of "seeing a place, red, warm with fever, and opened up, possibly even have infection draining out of it. I did not know that you may have it "underneath" the top layers of skin, like mine, forming a lump of infection, that grows quickly and of course can spread quickly also.

But, once again my "gut feeling" took over, and I felt it was something that needed to be seen ASAP. Even if it were to be a "tumor" it still needed attention and I knew I should not put it off. So, Friday, early right after my PCP's office opened, I called. They are only open a 1/2 day on Fridays, as far as seeing patients, but she must have went back and asked my doctor whether I should come in or if it could wait until next week. So she came back and told me to be there at 11:30 Friday morning. Again, I still was not really considering "infection". The "signs and symptoms" I am aware of about something such as this, is what I said above... red, hot, feverish, possibly broken open, and/or infection that you can "see", would be what I would look for if I suspected infection.

Needless to say, I definitely learned something new in the medical world. I have cellulitis. So, #1, I DID GO and not put it off. If I had that may have landed me in the hospital for IV antibiotics (I am just praying the 2 oral ones I am on gets rid of it all)...both of them very high powered strong medications for infections.

Even though it had "appeared" that the sliver came out, and what bit of infection I got out, did not rid my body of the bacteria underneath the skin. Thus, this lump would have either continued to grow, spread the cellulitis somewhere else in my body, or it sure would have began to grow red, warm, and possibly show outside on top of the skin. It was bad enough I went for that many days without seeing my doctor. But, HE HOPES these two antibiotics will do the trick.

Anyway, one of them Rifampin has to be taken on an empty stomach! Well, you can imagine, I am already of the tendency, to get sick to my stomach, so put that in there, along with the other one Bactrim, and all of my other medications... and I feel like hell honestly. I have read and re-read about both of them, especially "usual" side effects etc.

Of course nausea, upset stomach etc.. is a major one for just about any type of antibiotic. But, I am also very fatigued, in fact as much as I wanted to go to church this morning, I just felt I a not in any shape to go at the moment. I have not slept well again in weeks.... between the stress of my own health problems, and now my Mom's; along with trying to get her to PT 3 times a week, plus she needs an MRI, plus our pain doctor is going to do the Epidural Steroid Injections... (transforminal). They in fact called Friday while I was in the doctors office. I guess they have already gotten the "okay" for the injections from the insurance company, and are ready to set a date up for her to have the injections done. On top of all of that, fortunately, up until about the last year or so, my Mom has been in good health, for her age. She will be 80 next month, and other than controlled high blood pressure, and a "leaky" valve in her heart, that for now they are also controlling with medication, Mom has no clue about any of this and the way they have to do things now. So, when she would go to the doctor, there was none of the extra tests, and so on... she thought she would just go to my pain doctors office, have the injections done the same day, and come home. As I had explained, no doctor that is a legitimate doctor, will put injections into your spine, without a visit to his/her office, having to schedule it with insurance also, and all of the other red tape that now goes along with procedures. So, that has not helped either. I have began to see, that even though I may go over things with her several times, she still may not "get it"... and I find myself explaining things over and over to her, often more than I think I should have to... but I know she is also concerned, been in more pain, that probably she ever had in her life so far, I still get concerned that she maybe a bit more "mixed up" at times than normal.


So, in some ways, I am also concerned about her memory... and even some of the things she tells me about, that happened a very long time ago, and I a JUST think to myself, wow did that happen? And if it did, at my age, why did I not know that years ago. I was around my hometown most of my life, so some of what she brings up and tells me, almost sounds "too odd", strange, "off", to be true in many ways.

Now, onto the REAL REASON for this post, and it seems I ALWAYS have a way of going "full circle" back and forth in order to "say" what I want to in the first place. That is the true "writer" in me for sure...

I am posting this graphic for all of you.... let's see if you recall anything about it! I know for me, I just about ROFLMAO when I hear or see it!