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RA, Lupus, Chronic Pain - the Complexities of Living With an Autoimmune Illness and/or Chronic Illness - How Do you Live with the all too often feelings of "guilt" of not fulfilling your destinies...

As you can see the very "title" of this post is complicated, to say the least. As I've had to succumb over the past almost 3 weeks of cellulitis, strong antibiotics that totally messed my entire digestive tract up, to the addition of a "stomach bug" that is going around here locally, I find myself full again of guilt, of shame, of feeling as if I am letting my obligations down as an advocate, a "voice" for others, of my own writing, my blog, my Mom, and everything else that I've had to "put on hold" due to once again the "arrows" of dealing being chronically ill.

There is NO EASY part to being ill with some disease that is so often "invisible", that drags you down within a few moments totally catching you off guard. One moment I maybe feeling great and within hours I can be immersed in sickness, more medications, doctors visits, and so forth that drive me to the sofa, rather than here online, or out and about doing all of the other things that are SO crucial to me in life.

I cannot even begin to count the numerous times that I have the sinking feeling of "letting these diseases" rule and ruin my life. Being ill with something such as an autoimmune disease(s), you feel as if those totally reign over and above any and all plans, decisions, and destiny that you have for your life. They control the very essence of daily living. From whether I feel like going to do shopping and errands, take my Mom out, or to a doctor's appointment, washing my car, cleaning my home, taking care of ALL the things like my flowers, my lawn, having the energy to even re-pot a plant, or give the pups a bath... sometimes just giving "me" a shower can be overwhelming.

No one ever gave us 150% PROOF from the moment we take that first breath that life will always be filled and fulfilling... and that we will live and love without illness, with out difficulties in life, and sometimes the "hopes and dreams" we have had turn into a totally different way of being, that we ever expected. I have not done a "real investigation" but I would bet the number of relationships that "withstand" the all too often complicated life of living with someone chronically ill, that remain SIDE BY SIDE together... is quite low. I am most assured, as with cancer patients, sometimes a spouse, or dear friend, even a family member can reach a place they just can't cope with all of the complex nature of constant doctors, meds, surgeries, procedures, sudden illness... is can certainly be like the "elephant" in a 12 by 12 foot square room, quite OVERWHELMING...

I sometimes see the frustration even in my physicians faces, when I come in with something that is so complicated and complex, they themselves may not be sure what step to take next.

I am not one to "gripe", "Whine", complain, or even remotely think the "my medical issues" are "worse" than other people's... Pain and/or Chronic Illnesses mean different levels of frustration than others. I have had so many people tell me first of all that I am the "strongest" person (emotionally and mentally) they have ever seen... yet, honestly I don't feel that way. What I try to do, if at all possible, is to put "my feet" in that other persons shoes... if you can remotely imagine what someone else is going through, all too often, it makes your health issues seem small  - and I am NOT discounting that yes, I am have several very serious health problems, and have been through some extremely difficult and serious surgeries, procedures, medications and at times any and all of us, including my own physicians, maybe puzzled and perplexed about certain things that happen to me as far as on a medical level. "Who woulda thunk it"? that I would come down with "cellulitis".... and in fact, we "think" - my PCP and myself, that I had a case of shingles about 7 weeks ago or so... they had cleared up by the time I saw my doctor, but the small scars were still there, lined up almost in a row after row inside of my right knee, and when I explained what they had been like, he said that it more than likely had to be shingles... nothing else as far as some type of a rash would have came up in that kind of specific "pattern" as they did... and I have this uncanny "act" of I will be on a medication for one thing, and it so happens, I may come down with something totally unrelated, yet the medication I am on, will help that also. The "shingles" were that way... I had asked my PCP to be put on a daily dose of Valtrex. Since I started the journey with Lupus... I constantly am fighting fever blisters... not so much now in my mouth, but the corners of my mouth were almost a constant bright pinkish, with a bit of blistering it in. He would give me a "high dose" for 2 days, it would clear up, and then a few days later come back... well I had not even taken the "daily doses" but possibly a day, and all of a sudden here comes this "rash"... well the Valtrex would be exactly what he would have given me for the shingles... thus there you have it...

I am really down and out though since all of the illness, back stuff, Mom's back, and so forth, have kept me from writing here on my blog as much, have slowed once again my completing of my 3rd book to a snail's pace... and have just "thrown me" for a loop when it comes to ALL of the things I truly NEED to be doing... but as my Mom and I both said earlier this morning... it ALL happens for a REASON... so there must be at least a "billion" reasons that I get thrown off course, and my sails catch a wind into foreign waters, all too often.

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....





















 

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...