Tuesday, August 11, 2015

Cellulitis, Antibiotics, MRSA, Catching Up, and what "normal" is when you battle with autoimmune illnesses

Gosh Lord knows I need all of the prayers I can get for sure... I did find out yesterday that this stomach mess that began last Friday maybe a "stomach bug" going around. I spoke to my pharmacist about a medication, and they told me that lots of people had been in over the past week or so, with the same thing... really nauseated, feeling lousy, and be "sick" to their stomach... I kind of thought that maybe what it was after I spoke with Mom Sunday over the phone and she was sick Sunday morning with about the same thing. I believe mine was a bit worse just due to the fact, I had already had such severe intestinal issues from the antibiotics, and I am just "worn down" from the cellulitis, not sleeping, the heat does not help and so forth... hopefully I will NOT encounter any more of that mess for awhile. I am still NOT at 100% though. Yet, at least I am COMPLETELY THRU with the antibiotics. I officially took the last 2, yesterday evening. Although the "lump" is still not completely gone away, I think I will just see what happens over the next couple of days. I certainly do not want another round of antibiotics, especially since they are some they use to fight really, really tough cases of infection. I do not want to become "immune" to them and then not get what I may need, if so happened I did come down with some type of very bad infection... MRSA always remains in the background when I think about having to take antibiotics. Although my PCP does not just hand them out for anything, but with me being more prone to having an infection, I have had to take more than I really want to over these past few years. I GO TO the Cardiologist this morning. Just a routine follow up, but her appts are always too EARLY... this one is at 11AM so not too bad, but I always prefer to have appts. very early afternoon about 1PM... that way I have all morning to do things and get caught up on stuff, and I don't waste time having to get ready for a doctor in an appt that is way early... Then the rest of the week is actually pretty quiet as far as going to doctors etc. I STILL NEED to go have the damned Chest X-ray done... I got sick and had to postpone it again... and I know my Rheumatologist is really wondering what the heck is going on. Anyway, I will be playing catch up on lots of stuff over the next few days... so I appreciate everyone and your well wishes and prayers... and I hope things "settle" a bit now, and I will feel better over the next few days, get my strength somewhat back, and be able to get back to "life" rather than a sofa and movies 24/7... Hugs to all... Me

It SUCKS big time, when you feel your life is totally out of your own control, and you have no way to "fix" things... you just have to succumb to the sofa, resting, and putting a whatever you could call "life" on hold.

This past 6 weeks or so have been a total nightmare. Combine all of the issues with the lump on my thigh, cellulitis, high powered antibiotics, my own lower back, pain, stiffness, and a seemingly "worsening" of RA symptoms. My hands and wrists, along with fingers and thumbs are really bothering me worse than they ever had. My right hand has several swollen joints and even the cartilage between my fingers seems to be swollen, puffy and very stiff.

I have actually missed my Orencia now for the 3rd week (in fact I usually take it on Tuesdaus - but after all of the issues with cellulitis on the top of my left thigh in a place that seems where I usually do the Orencia Injections, first of all, with the infection I feared taking it, and 2nd of all, I am not through researching it, but I feel I may have gotten a "contaminated" needle giving myself the injections... I am a stickler for the skin being very clean, and make sure that the alcohol swabs get all in the area, and I always have clean hands, and usually put a bandaid over that spot at least for a day... and I realize with any type of autoimmune issue, I am more apt, more prone, to have these types of issues, but when you get so ill, that your entire life goes on hold for several weeks, it is surely difficult to deal with. 

Anyway, I just completed two 7 day rounds of Rifampin and Bactrim - I hope and pray after 14 days total of these two powerful antibiotics, this cellulitis is gone, and what small "lump" that is left, will just take a bit of time for my body to "absorb" it. I've never had to deal with cellulitis before. So, what portion I do know about it, is what my doctors, my pharmacist and my own research has told me.

I don't want to have to take anymore antibiotics if I can avoid it. I already have infections at times like pneumonia twice in the past year or so that require them. Thus, I worry so much about getting "immune" or something mutating to where the antibiotics do not work. Actually that scares the hell out of me.

But, I must be sure that all signs of infection are gone. I can't take a chance for sure. Plus I feel if this does not do the trick, I will have to be hospitalized and put on IV antibiotics, which I don't have time for, and is surely NOT a convenient situation for me financial wise, time wise, and due to me being here, with the pups, and no longer having another person here to help out, I just can't be gone several days to the hospital. Of anything that sucks about being alone, to me is just that. I can deal with "alone", like many of us do. What I can't deal with is the times I need to be gone for more than a day... then that requires so much change. I must find someone to watch after the pups, and that is not an easy thing... fortunately there is a young woman, along with her sister and Mom that do come to your home and watch after them. But, mine are both so totally ruined, they have a hard time with a stranger, or with me being gone for any time over a day, or a day and a night... so it is like having kids... you can't just leave them at the house for a few days, run off to the hospital... you must have them watched over... My Pug, is really get very stiff herself... she is up in age and has a difficult time getting around... can't jump up on the sofa anymore by herself... and she requires a bit of extra attention, plus I give them both medications daily and so forth...

Even though some may not comprehend how an animal or animals can be so much of your life, but they are... anyone that is an animal lover, and has or had a dog(s), cats and do forth totally "get it"... they become a part of your family and for me right now, they are my family...

Even though I think I should have "more time" now, I feel as if somewhere my time is being "sucked" away... the days feel shorter, and the number of things that need to be done, longer... and I never seem to be able to find enough energy to complete the tasks that I should be able to... I've tried everything... lists, organizing, I multi-task, although not as well as I used to be able to... but it is like life goes into overdrive... and rather than slowing down, and things getting "less" all needs are more... whether it is my own health, my Mom's, the house, the pups, everything seems to suck time away... I spent over a week more or less on the sofa... so I have all of this stuff piled up... and all of it important in its own way... but it is impossible for me to handle it all anymore... the age, the autoimmune illnesses, along with everything they bring and take away... my body feels "worn" out rather than better....





















 

Friday, August 7, 2015

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...

Thursday, August 6, 2015

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...

Friday, July 31, 2015

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

Thursday, July 30, 2015

"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!

Wednesday, July 29, 2015

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

Tuesday, July 28, 2015

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...