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