Ongoing Lupus, RA, trying to cope with Loss of my Aunt, and all that is so complex when you are fighting a chronic illness/pain issue, dealing with stress, surgeries, and grief

Life can be so awesome one moment, and tragic the next. My Aunt Geri, Moms last living sibling, her younger sister passed away yesterday afternoon after battling a rare form of stomach/intestinal cancer now for a long while. I believe it has been at least 3 years, if I am remembering correctly. She went through lots of chemo therapy, but we knew for one it was not operable, and two the doctors had already said that it was terminal. Yet, for the Grace of God, she lived to see her first Great Grand daughter born, and then some. She lives up in Mesquite, so we don't have any details at the moment. Even though her family, along with my Mom and I knew it was coming, you are never really prepared for something like this. Especially with Mom and her lower back issues, and all we have been through and are still dealing with, plus my own issues with my back, needing surgery, then things getting complicated with me contracting cellulitis, no 3 weeks of antibiotics later and the lump remains on my thigh under the skin. When I saw the doctor Friday, he said if this last round of antibiotics does not show signs of going away this, then I will need to see a surgeon, have the lump removed, and then they can determine exactly what it is. It has now gone from being about the size of a silver dollar, kind of a bit hard, but never feverish, red, and nothing ever burst through the skin, like you would assume cellulitis would. That is kind of the reason why he and myself are baffled as to why it remains. It has now turned into being about the size of a quarter but very hard, sore to the touch, plus I developed another lump on my right leg, that is almost in that same spot, just on top of my right thigh, and almost exactly across from the other one. It is not nearly as large, about the size of a pencil eraser, but sore to the touch, and like the other one pretty hard, and does not move around under the skin. At the very first, before I even knew what it was, it was a bit softer, and it kind of moved around underneath the skin when I would try to check out how large it was. Then of course, I had ran out of Orencia - now I guess it has been about 4 to 5 weeks ago. I had issues getting the insurance to get off their butts.. I needed a new script from the doctor, which they received, so I thought they were going to fill it and send the meds to me as usual. Well, after going another week, no call and no medication, I called them. I found out yes, they had the new script, and even though i had already asked for it to be refilled before they got the new one, they did not fill it. Instead they were waiting on me to call back and ask for it to be shipped. In the meantime the lump formed, all of the other stuff came up with both Mom and myself, so I have not had any Orencia in weeks. I feared my last couple of injections may have been contaminated somehow and caused the cellulitis. I am supposed to be on Xeljanz anyway, did the blood work and labs, then the TB lab test came back indecisive, thus I still have not been able to have the chest X ray ... I was hoping to do that last week, then I came down with the stomach bug, and I am still not completely over something with my stomach. I am still somewhat nauseated, which I contribute to the heat, already being sick, a headache, all of the stress about my Mom, my own things such as the back surgery, and so forth. So, now my fingers on both hands, and in between my fingers are swollen, my knuckles really don't want to work correctly and I am having hell with the RA in both hands and wrists. I have always had some issues with them, but more in both thumbs. I have not been able to get the swelling down, and just trying to open a bottle of coke or anything is so painful, plus my grip is really bad right now... and then my darned keyboard that I love... it is solar, seems to be going out on me, thus this one sucks and does not even allow me to do a hyphen or quotation mark, and It is really irking me to no end...PLEASE continue to keep my Mom, and the family in your thoughts and prayers... as I had posted before, this is Moms last sibling, she has lost both parents, a brother, a sister in law... and most of the family on both my Grandfather and Grandmothers side.. of course we lost Dad in 2005... and am sure that brings up things such as that for Mom anyway... I appreciate each of you... I am thinking about trying to get ready for church. I missed this past two weeks because of being so sick and was going to try and go this morning... but I am still dealing with a bit of stomach issues, and with all going on, I HAVE to go and have my pain pump refilled tomorrow, I have no choice. We waited this time until THE DAY my PTM shows the refill date to be. For some reason it almost falls every time where I have to have it filled too early, for one reason or the other... so it worked out to be on the day this time.... more later...

I appreciate your prayers, and yes mine are with you also... this is just proving to be "another one of those tough years".... I had so hoped that 2015, would bring more Light, Hope and Positive things to our lives. Yet, once again so many of us are trying to cope with all types of chronic illnesses, pain, mental and emotional pain also, the loss of loved ones, and this entire nation in general... I can barely stand to watch or look at the news anymore. It is almost too depressing to see just how horrid people can be. From harming their own family, friends, to those who just do NOT care about humanity... the greed, corruption, the back biting, back stabbing... those that get rich off of our own misfortunes, from lack of care from insurance companies, to the extremely ridiculous prices of medications, even generics now are soaring out of the roof... and people have to almost feel as of they always have to look over their shoulder, whether in a huge city, or a small town... so many as I said above that have no remorse, or regard for human life. Even all of the "election" stuff... it just almost makes me physically sick to my stomach at the thought of just about anyone running for President of our nation next year and anyone of those possibly winning... we are already in a terrible condition, not just nationally, but internationally... countries going bankrupt... people not able to find jobs to support their families... and the amount of ever growing medical issues... our water, air, soil... all polluted with Lord knows what... or whether you will walk out of your local market, or church, or movie theater and be taken down by some "home grown terrorist"... I despise even the sound of that... hard for me to fathom any human especially in this great nation being "home grown to terrorize, and kill others... the insanity grows daily.... we have the weight of our own issues on our shoulders, along with the weight of this entire nation and world, as far as the safety, security, and welfare of all of us.. again thank you all for your continued thoughts and prayers... my Mom and I, along with my kids and family appreciate each of you..

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.

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!

How MUCH MORE Can one person stand?! Chronic Illness, Dealing with Life's other issues, & not just losing your mind or collapsing in it all....

Honestly gals and guys... I am concerned that I am either getting "worse" when it comes to the RA,Lupus, and so forth... or I have something else really going on with me... I've just had all kinds of "new" symptoms... first of all, I am having moratl heck with my fingers, worse than ever before. My right hand has a couple of very swollen places between my middle finder and my "pointer" finger next to my thumb. Plus my thumbs are really bad again. Plus, I woke up in such severe pain in my lower back and down my legs this morning, I really thought I had a kidney stone again. It was almost like a "cramp" or what we used to refer to as a "stitch" in your side. But, rather than it kind of working itself out, it went on for a couple of hours, and even now it is not the best .... plus I have this worsening of the "weakness" type o feeling in my legs, almost like they are jello and feel as if they could just "collapse" when I am up walking. I've also had BOTH of my ankles again not so great, but my right one as always, is so swollen and hurts like I sprained it or something... and I still have that "odd" kind of pulling pain underneath my right arm and into my arm pit then kind of a bit around to my back.... my stomach is just a mess... as if I was having or trying to have "spastic" colon issues, but it has been 20 plus years since I had one of those attacks. I used to have them when I was younger and of course they always called it a "nervous stomach" back then. But, it is of course down into my lower intestines, like they are trying to cramp up... and then there is this almost too weird to try and explain, "severe" fog... brain fog, memory fog... and now it is just so bad... I walk around almost as if I am in a daze... and my memory is horrible the past couple of days... but I feel almost "detached" from myself... and I've had that happen a couple of times in the past 10 years or so... where you almost feel like even though "you are here"... you almost feel as if you are looking "down" upon what is going on... and really not "in" the situation,., I know there are terms for it... kind of one of those "fight or flight" responses, that our "mind" uses when we are way overly stressed... and when that "breaking point" begins to be felt... then we seem to "detach" from it all, and become a "quiet observer" because it is just ALL TOO MUCH to deal with... thus it is a mechanism to keep us from going completely bonkers... and my "LISTS of LISTS"   keep getting longer and longer, yet I am further behind more every day.... It seems EVERYTHING right NOW is "priority",.. yet none of us can do 100 things all at once, and really "survive" going nuts....plus the night terrors have been so bad, this place of feeling so totally like a "failure", feeling like I don't "fit in", that people "dislike" me, and they look down on me, because I am not "enough"... Just about every night terror I have has this same theme... either I am "not good enough" for family, or some job, or some group of people I am around, or my "spouse".... hahahaha ..... now you see where I am coming from... I feel that now my life is HALF over or MORE THAN half over and I'VE NOT ACCOMPLISHED  a damned thing I have wanted to... the list of things that my home needs is endless... now many of those that I would LOVE to be able to do... I know are not feasible for me to even give thought to....yet when I get so "bent" as I love Matchbox 20's song, "Bent"  - I feel exactly that way "bent"... I have always thought no matter whether my family, a friend, someone I worked with, associated with... or anyone for that matter, that I am just "not enough", "not worthy",,, I've NOT done, this, that or the other... and that I SHOULD be accomplishing so much more... and the more I try to do, the more BEHIND I feel as if I am..... BUT TWO GREAT THINGS!!!!!! NUMBER1 - I GOT MOM'S INTO PT! And it is here in Ennis AND THEY TAKE THE INSURANCE!!! whew!!!! NUMBER 2 - She is scheduled to go see the pain doctor next Thursday so they can schedule the injections... SO HOOOORRRRAAAAAYYYY!!!!! THAT were two of the things I was most concerned about... so those are good to go.... NOW I MUST being to decide WHAT TO DO ABOUT MY LUMBAR/SACRAL spine fusion!!! I "THOUGHT" I MAYBE able to put if off for a while... but, as badly as the pain has been even worse than before the test was done... I don't think putting it off is an option, well not for long... I think just as my pain doctor said, get it fixed NOW... for it will only get so much worse, and I do not want to wait until I am even worse... then my recovery time OR even (and this may happen anyway) I think when he does surgery, it will be a HUGE worse MESS than any test showed... it never fails for me... it always is like that.... anyway.... I am still knee deep in stuff to do... but it am just totally wiped.... more to come...