Feeling totally destroyed, Mad as Hell, and wondering WHY LIFE can be such a torment for some rather than a joy!

I've kept my mouth shut about some of the feelings I have about this entire ordeal of myself, and my Mom being not well, not well at all. I refuse to ask for help, because I know that it will NOT happen, thus I do all on my own, from fixing a lamp, to fixing my plumbing to hanging a new ceiling fan (which that one I have not done yet) I am living now with TWO severely infected places on each thigh, one of which had already been incised over 6 weeks ago and should be well. But, it has taken much longer, I guess just due to my immune system issues... then 2 weeks ago, after hearing a "weird" beeping, during one of our bad weather days, I found out my internal pain pump has a "motor stall" and I had to scramble to Dallas, to my pain docs office to meet a Rep from Medtronic, so they could turn the pump down to a "no flow" basically, and then I went in on Tuesday to see my doctor. Well, it seems on that Sunday before the pump restarted itself again. So, he turned it back to my normal rate of medications, BUT he messed up on my Bolus' that were supposed to be 1.001 every 8 hours and he put .1001, which is a huge difference. I left 2 messages, two days in a row, and I knew Friday the office was closed. So, I just kept taking my oral meds to supplement the difference, and about 9:06 AM Friday morning, the pump had another "motor stall".. so as I was about to call and leave a message that the thing had another motor stall, the nurse called about the bolus, well I stopped her, and told her we had more problems, than a bolus not right, and let her know what happened... this was in the middle of all of the horrible weather, rain, and I was not about to make a trip to Dallas for a 3rd time in a week, not in weather like that... luckily, one of the Medtronic Reps, drove all the way from Dallas, and came to the hospital here and met me to turn down the pump once again to mostly Off, no medication is being given basically, so again I can take the oral meds, and he was to "silence" the alarms, and yes they were until about an hour ago, and now for some reason, just like last Sunday, the "alarm" on the damned thing is going off again..... so I am not sure once again what is happening, because once he turned it to certain settings my own "PTM" that I use to check it and give myself the bolus' is not working. So, I have no clue what the "error message" is that it is giving.... Mom lost over 14 pounds in about 6 weeks, and I am still not having an easy time getting her to eat, and she is always confused about how to take her medication, no matter how many times I explain it, write it down, she even has a 7 day pill holder, but with the addition of a couple of new pills, she never gets it right... so I never know for sure if she is taking her medication, correctly, and when and as I said I have tried everything, from telling and explaining, to writing down the names, doses, and when to take it.... but none of that matters, she cannot get it right.... I have not even been able to go over there this weekend.... with both of these abscesses on my legs, and my pain pump stalled, I need to be close to home, plus the weather still sucks, it is cool, and cloudy, and dripping and I already feel like I have allergy mess like all of us since this rain came in and the weather changed so quickly..... but then the "trial" was supposed to be "next week" for the wreck Jim was in, in March 2014.. what a joke.... I cannot tell you what a freaking mess that entire thing is in, BUT I will tell you "how our lawyer feels" about me being sick..... after he spoke with me late Friday evening, and I told him ALL of what was going on, and he knew a part of it, because I had emailed him, but he did not know about the abscess stuff, because that had not happened yet... and his answer to me was, "Well, you KNOW you STAND TO LOSE a LOT OF MONEY if you do not testify!!!!!!!!! " and my comment back was ALL THE MONEY IN THE WORLD IS NOT WORTH MY HEALTH and what can I do with money if I DIE!? I am SO SICK OF THIS FREAKING TRIAL CRAP, AND IT IS A BUNCH OF CRAP! I wished i had never even been put into the "mix" of it all.... I stand to gain NOTHING ANYWAY, because, since we are divorcing, that means I am not "with him to help" so HE gains TWICE as much money since he will supposedly have to "hire" someone to take care of him.... and the lawyer gets all of a sudden 40%!!!!!!! I was told 30% in the beginning, which to me was too much, and now I know how he affords that huge, lavish, office on top of one of the largest buildings in Ft. Worth overlooking the entire city etc..... at 40% that does not leave MUCH for the injured party for sure.... I have kept quiet about this mess long enough.... I am SICK - MOM IS SICK, and I cannot even get my own church to put us on the prayer list! And it is funny HOW MUCH I HAVE GIVEN TO SO MANY because I wanted to, all types of help, information, and assistance, and YOU THINK ANYONE HAS ASKED IF I OR MOM NEED HELP??????? NO! So, the lawyer can KEEP his money, as I said if I am in a "Urn" or grave what the hell good is it to me?????? I have never "had money" and I never intended on "getting rich" off of an accident..... so they can take their money and shove it, because I wash my hands of it all..... the audacity of some to do and say what they do.... and furthermore, I want no "I am sorry" or it will get better crap either... I've heard that and it only GETS WORSE!!!!!!! Certainly NOT BETTER..... I do not think ANYONE UNDERSTANDS THE EXTENT of how serious my own health issues are at the moment, nor my Mom's.....

It is lie one day last week, I was looking at a newspaper online, probably from Corsicana. I happened to have seen an obituary about a woman from that area, and her, her husband and their entire family are very well known there. She had passed away, and I was trying to find how to get in touch with one of the sons.... he had helped me years ago, when I was having some really tough issues, and even came and took me out for my birthday in 2001, right after my heart attack. We went over to Waxahachie and ate and then he took me and bought me a box set of Stevie Nicks songs... that I have cherished and still have for years.... there were many times that I "hid" out there, when no one else "believed" what my "then jerk" of a husband was doing to me, and how much I felt threatened.... and him and I became "friends" and it was that, friends... he also had been through a tough divorce, had a "step-daughter" that totally made him almost hate kids, and I always felt I had a "safe haven" when I needed one.... even when he was not home, which he worked a lot, I could go if I needed to and stay..... I can still remember many times we spent listening to Brooks and Dunn, and several songs that totally "touched us" both at that time... and maybe.... just maybe if I had stayed in TX and not left for Seattle, something could have developed between us, but I left, it didn't... I come back and 10 years later, find myself again single....and then the irony hit.... I noticed in his Mom's Obituary it said something about she was "proceeded" in death by a son, and it was his name, I had to stop, blink and again, think gosh no, he was only about 3 years older than me, and even though he had a health issue, he actually had that under control, and was doing well.... but that was 10 years ago.... or a bit more.... actually longer than that, because I left TX, in October 2001 for Seattle.... and I did not return until Dec. 2005 and it is now 2015 so actually more like 13 or more years since our last conversation...... and then I do a search, and I find HIS OBITUARY! He passed away in 2012. I think... and I had no clue, have no idea why, how, if he got sick, or hurt, or what happened... my heart sunk... here was someone who honestly gave me the courage to get up, get out, and change my life, when everyone else thought I was the "one" with problems, and no one believed the other party had issues (until he wound up in prison, and is back again) - not even my own Dad believed me... he thought I was making it all up and I had the "problem"..... so, I was just at a loss, and trying to think of someone who might be able to tell me what happened... and there are a few people I could contact, but I am not sure I even want to "stir" that can of worms from BG....... so life can throw you a horrible curve ball, or MANY curve balls, and you never know when that ONE will be the "end"of your "earthly career"..... I am honestly MAD AS HELL right now - and normally the "hope" keeps me afloat, but at the moment I only see HURT and PAIN ahead, at 55 years old, my life totally sucks!

Another Update - Pain Pump "motor stall" again this AM, a;long with BOTH left and right lumps appear to be abscesses - AI. Lupus, Sjogren's, horrible weather and also HAPPY HALLOWEEN TO ALL!

Well, Of course with me "anything" is possible or impossible... I now have what appears to be the left lump Re-infected and I am on antibiotics and an appt on Monday to incise the right one, which my thoughts are that he also "opens up" the first one also... AND if he feels they are "deep" enough, then he will probably do it over at the Surgery Center (Outpatient) and fortunately it is here in Ennis.... and then almost at the exact same time, but Thursday and this time Friday. my internal pain pump has a "motor stall"..... yes again, and I was lucky enough that the Medtronic Rep was kind enough in this horrible weather, to meet me here in Ennis at the Hospital.... thus we got it done in the lobby, and I am so pleased they have went out of their way to help me.... but I face "surgery" now to replace the pump - BUT that can't be done until these "abscesses" are under control - no way no how will they take a chance if I have an active infection going... so pray these things heal quickly.... I want to wish everyone a very SPOOKY HAPPY AND CANDY FILLED HALLOWEEN! I just hope it stops raining long enough for the kids to have fun.... I know lots of the churches will be having them inside, so the kids are not in the weather.... I am totally wiped out... I wanted to get SO MUCH MORE done today, but I think I am losing steam quickly and am headed to the sofa to watch a movie with Bub's - it is "our time" together to do that if possible....

The GOOD news is Mom's "leaky" valve is NOT why she is getting out of breath easier lately... it is due to her being so ill, losing her not just fat, but lots of muscle... so she "beefed" up or rather told her she has to get a great deal more protein in her diet AND start doing some exercises... I am taking a small 2 pound weight to her and some of the "bands" that she can attach to a chair leg etc and exercise her thighs like that... but Lord prayers answered, her heart actually sounded BETTER smile emoticon BUT of course, now I face having to have this right "lump" cut open... it is abscessing... so I see the surgeon next week... and heck the other one is not well yet completely.... when does it ever end........

My Granddaughter Turns 18 Years Old today!!!! I am so totally proud of her!

 And of Course Happy Halloween to all of the little ghosts and goblins, and those Adults that are having parties have a great celebration and be safe!

Just adding in a bit more of the above...

Well, as it stands now, the Medtronic rep, Michael, met me yesterday at the hospital here in Ennis. Due to the horrible weather I had told my pain doctors nurse there was no way, I could drive in the downpour to Dallas
yesterday. So he did meet me about 1PM or so, and he turned the pump basically down to "minimum flow" like they did last week, so I can take my oral meds and not hear that "beeping" from my side every 10 minutes.... as I almost knew this means surgery and a new pump... but it has to be approved through the insurance and so on.... BUT there are the two "lumps" both of which are abscesses, and the right one appears like it could burst open itself at any time, and it hurts like heck, especially even if I lightly brush across it with my hand.... the other one, seems a bit "better" but it also has abscessed and I am not sure what he will do... whether he will try to open it up again, as before or allow the antibiotics to try and work, probably both... and at first I thought this 2nd one on my right thigh was "smaller" but as it has become abscessed, it appears to possibly be larger and deeper than the first one... So this may call for him actually bringing me over to the surgery center and putting me to sleep in incise these both. I feel as if I am "repeating" myself here but honestly, it seems every moment something happens or changes, so I keep trying to update things, for I know some of you want to know what is happening..... Right now, I am hoping that this right one does not "burst" before Monday.... This all could not come at a worse time... for many reasons, one of which there is a possibility that the "trial" from the wreck in March 2014, may start next week. At this moment, there is no way I can go... my doctors have already cautioned me, and really prefer that I stay out of the public, since now I am even more suseptable to "more infections", and they also really prefer that I am more "off" the legs, and somewhere at home, where I can be careful NOT to either burst this right one open before I get to the doctor's office and honestly with my pain pump now basically turned to "nothing", the oral medications as strong as they are, do not really do nearly as much good as my pump.... which makes sense..... so I am not physically, nor mentally up to making a trip back and forth to Dallas, to sit in a court room at this moment - There is no way that any amount of $$ is worth me risking my life for.... I know that is a difficult thing to say, but at this moment, I would be risking me being much more ill, if I had to run back and forth for several days... I just cannot do it at this time.... as I told them once I see the surgeon on Monday afternoon, and see what he has to say, then I may know more, but frankly I do not intend on leaving the house at all if I don't have to... and I hoped to be able to go to church Sunday, but I also know that I may wake up and not feel well at all.... between the strong antibiotics and then not being well, my stomach can also give me issues... so even that I am not sure of..... again I appreciate all of your concern

UPDATE!!!! Pain pump stall, My Mom's health issues and finding out today about this breathing problem and hoping it is NOT her heart valve & dealing with LIFE and Autoimmune everything!!!!

Okay everyone, please PRAY for MOM and MYSELF! She sees the Cardiologist this morning, and I PRAY her shortness of breath is NOT her HEART! She has a very "leaky" valve and I think I explained before why the shortness of breath... and our Cardiologist has had it under control with medications, and her not taking in as much fluid daily... but she has not been well at all over the past 2 months or so... and now her Kidney functions are low, which they were a bit better earlier this week but she still has to see a Nephrologist next week. I am praying the shortness of breath is possibly allergy related, because she does have allergies, like many of us, developed the late in life.... but if it is her heart, it could mean open heart surgery.... AND as far as my pain pump... I am NOT out of the woods yet.... it appears that it "restarted" itself out of the stall on Sunday... which is weird, because the Rep from Medtronic that saw me last Friday, had turned off the alarms, so they would not drive me nuts, but I kept hearing it go off, until Sunday.... but they had turned the medication basically to a minimum so I could take oral pain meds until we do surgery to replace the pump.... SO, yesterday my pain doc... did put my meds back going as they were... and he told me, not to get too excited yet, because it could do this again, and for the next 48 hours or so, I am having to watch it very closely... BUT, he also made a mistake when he reset the pump to send me the meds.... I have an "optional" Bolus every 8 hours... I can give myself an extra amount of medication... well he sat it WAY LOW rather than were it should be.... it was supposed to be 1.001 and he missed the decimal and put it at .1001 which is a HUGE difference... so now my bolus is really not doing a thing for me... that is just nothing compared to what it should be... so I called yesterday and left a message... but I guess I will here back today sometimes.... so between all of that, Mom, and now it looks like this stupid other "lump" on my right thigh is also in the process of going to "abscess"... it is now turning red and appearing like it might... plus I had been running fever off and on for a few days... which I thought was the pump issue causing it, but now I thinking this stupid lump could be the problem... when it rains it comes a flood on my life it seems.... lots of other things also... so there is what I know for now.... I appreciate all of you that are praying for us.... Rhia

When LIfe decided is to Just apart where do you turn, what do you do, and how to cope, deal, and figure out all of the why's, what's, how's. when's... chronic pain and I am in INTRACTABKE OAUB due to my PAIN PUMP STALLING & Meaning surgery for a new one!

I know there are "lots" of sayings, what does not "kill" us makes us stronger, when life gives you lemons, make lemonaide.... and so forth but WHEN ENOUGH OF DESPAIR, GRIEF, AND MISERY... ALONG WITH EVERYTHING GOING WRONG... COMES AROUND all of those "sayings" fly the heck out the window.... i was already in enough pain and despair, and now for my pain pump to decide of all times to "stall"... this is just not a good thing at all for me.... I am desperate....

Yes, right now is the very WORST time for my pain pump to decide to go out... and there is no way to "fix" it... once it "stalls" as mine has, then major surgery and a new one is the only way to take care of the issue. OF course my pain doctor prescribed a massive dosage of Morphine Extended Release to try and make up for "some" of the lack of the pain pump, but there is really no way to give me enough "oral medication" to take care of all the pain.. I have had a bit of what I might call "withdrawal" but not so much that as it is severe and almost intractable pain since it finally completely went out. They basically "stopped" it on Friday - Medtronic who makes this pump, has reps that help with these matters... so one of the Reps met me at my pain docs office on Friday morning, and even though he was in OR, his nurse was able to get hold of him and they decided to turn the pump to "a minimum" dose which is basically nothing... once all of the meds finally went through the catheter that delivers the meds to my spinal canal, then of course the pain began and yesterday was horrible. I almost did not even find the morphine... in fact I called here in my home town almost every pharmacy before leaving Dallas... because I felt I may have problems finding that high dose of medication in Ennis. But, fortunately one of our pharmacies did have it... so I came straight home, dropped it off, got Mom to her house, and picked up the meds.,, I knew I did not have very long before I would not have any medication in my body, and so it was... by the time I picked up the script, got home, and settled in, I had to take a pill, and since then I am alternating between the MS Contin ER and then my Oxycodone, which is my oral medication I took even with the pump for times that I had more pain than others... It is very difficult to take someone who was being given about 11mg's right into my spinal fluid daily of Dilaudid, and try to replace that with "oral medication"... as I said they really cannot give me enough, not by mouth .... the pain pump delivers it straight to my spinal fluid, thus I never had any side effects, no breathing problems, or anything that oral pain medications cause. Since they do not go through my entire system, then I take a much smaller amount daily, yet it is much much more efficient, and without all of the issues that as I said oral meds cause... I knew that the pump had about a life of 7 to 10 years... and then it would have to be replaced... the battery life in them is about 8 years average, thus they were puzzled as to why it had a sudden "motor stall"... it is rare, very rare, but heck whatever is "very rare" I can know will happen to me, always does.... they even asked me if I had been around anything electromagnetic, like an MRI, or such because that will cause it to stall, but no the only thing I went through was at the court house two times to take paperwork in to the District Clerks office and went through the metal detector, but that has been now about 2 weeks since my last time, so that should not have caused the problem... I even stay away from my microwave... I turn it on, then back away... even though it is not supposed to have any effect on it, I have always been extremely cautious because of the pump and knowing that certain things can harm it.... I have been to the docs offices several times over the last couple of months, with me and my Mom, but still nothing as far as any type of equipment that should effect the pump... I even thought since I had been doing lots of stuff here at the house, moving big plants around and lifting some stuff maybe I did something to it, but nothing like that would cause the motor to stall... and as far as the tubing from it to my spine, it was there in the beginning and has been "grown into " the place now for 5 plus years, so that should not effect it... I had a couple of chest Xrays but that should not bother it either.... I had been moving plants around and potting soil... so I had lifted some things that I probably should not have but that was more due to my back, and my shoulder replacement, and nothing to do with the pump... and why now.... who knows??? as I said this is the very worst time for this to happen... I have Mom and her problems and she has a couple of doc appts but both fortunately are here in town, so even if I can't go she can go by herself... she would not understand anything they say probably... but that I can find out so I am not all the concerned about that... but then there is the issue of the "court hearing" if the truck driver that ran over my soon to be ex-husband that now they still have not offered a settlement... so if that does not happen this week basically that means a jury trial that may last a week or more and that means a trip to Dallas every day for me.... and if I have surgery, there is no way my doctor will allow me to even "ride" to Dallas and sit in a court room, much less drive myself... and this needs to be done ASAP - as soon as the insurance gives the okay, the pump surgery needs to be done.... which hopefully will be this week sometimes.... I have all of the divorce paperwork done and the court date for that is not until Jan 4th, so that is not a problem... thank goodness I did get the papers all done and filed.... anyway, I was in the middle of trying to adopt a new puppy also, and now I thought Mom's stuff would make me postpone that but now, until I have this surgery, I have to postpone getting a new puppy, and will probably have to have my dog sitter to come over and check on Bub's.... I maybe in the hospital 2 days and a night... and should be home after that... but I will be sore and tired for a few days once that is done.... anyway, it is all just a horrible mess right now... and honestly I don't know which way to turn... I had to miss church this morning, but I am in so much pain, there was just no way I could get dressed to go... plus the weather here is horrible, cooler, still raining, and even though we did not have as much flooding, some of our roads are still flooded in places, and you have to watch where you drive.... anyway, I have not even felt like getting into the shower and I have to do that, but I thought I would wait until a bit later in the afternoon, and when I have enough of my pain meds in me, then I can get in the shower and I am sure the warm water will help some of this pain... I have discovered one thing..... again not good... MY LOWER lumbar spine does need surgery.... after the pump meds began to wear off, my lower lumbar spine/sacral is causing me so much pain, almost more than anywhere else... so now I know why at times even with all of the meds I've had problems there... I had been told I needed at least a one level surgery there, but I know that does now need to be addressed.... it is effecting even my legs badly, the pain down both of them is terrible.... so again not a good thing... but it does tell the story of what problem I am having with my lower spine that effect my hips and my legs.... Thank you all for the thoughts and prayers... I cannot really sit here much, so I have not been online other than now, and earlier to post at first what was going on... I need all the prayers I can get right now... I don't even know who will get me to have the surgery, then drive me home afterwards.... so there are many "little" things that are "big things" with all of this....

NNow just when I thought it could NOT get WORSE my Pain pump Stalls!

Well I only thought things could not get worse - my PAIN PUMP "Stalled" yesterday and now I am probably getting no medication at all from it... I did not figure out until late yesterday the "beeping" sound I was hearing was my Pump going off and not my weather radio! O had taken a bolus in the morning about 8 AM yesterday, but then at 4 PM I started to give myself a bolus and it make the sound  like not it was not time yet... so I looked at it and discovered it was sending out an error message "8476" that means "Call your doctor, pump has stalled" now it is going off about every 15 minutes and I am beginning to "know" by the way I feel I am not getting medication.... but my pain docs office is closed on Fridays and I left a message at almost 5 yesterday in fear I would hear from no one, thankfully the nurse had gotten my message, called the Rep from Medtronic who called me right back himself... but the only way to know what is going on for sure, and what to do to "fix it" is meet him where he can run diagnostics on it... that means going to Dallas this morning in possibly HORRIBLE weather.... which I hate Dallas without slick roads much less slick ones and raining... but I have not much choice... I am beginning to "feel" the withdrawals from me not getting meds, and the pain is slowly getting worse... I have oral pain meds to take, but I have to make sure, that I am not getting meds from the pump, so I don't take too much oral pain meds... I am just through with it all... I've already been in a horrid mood and feeling about things all week, with everything going on, the vvery last thing I need is to possibly face "surgery" on this pump... if it cannot be "fixed", then they can turn it off, but that mean oral meds, which will take a great deal more medication than with the pump... I am just at my wits end... I did not sleep, I am beginning to know the pain meds are not in my system, and the pain is increasing, and now I face if I go horrible weather to boot to Dallas..., it never ends... plus No one to take me on top of it all....

Where do you turn when there is nowhere to turn you feel like???

I just cannot begin to even tell what all has went on with me over the past 10 days, but this has been one of the worst weeks in my life, and it is like I see no end in sight...


I had a "plumbing" issue and thought I had taken care of it... well then I go to check my "clean out" to make sure, and I still had some standing water, from my washer in it, and I knew the weather is going to get back, and with Winter coming on, I certainly did not need a plumbing problem... it sucks because I just had all new pipes put i=under the house, and then even replaced a large section of our outside sewer line a couple of years back. So, it is all almost new, and even the cleanout itself we added a new one in, in order to hopefully not run into bad issues again....

In fact one of the guys from out city water dept. told me tree roots are really bad about getting into the pipes as they age... they can somehow get into them, and he told me to get a cheap container of bleach, and pour down that clean out once every month or so, and that would stop the tree roots from getting so bad... and it has slipped my mind, but once I had poured some of that in, and also went and got some liquid cleaner and poured down it, I thought I had remedied it... so Monday, he comes out, runs the auger through it, said he cleaned it out over 90 feet, and the only thing he found was possibly some ball of cotton or something, and it was okay... well that took 5 minutes and 130.00 later out of my pocket to be fixed....

Okay, then my Mom and I have been for followups for our PCP..he keeps an eye on her, blood pressure, and she has had some issues with UTI's and he watches me every 3 months due to the Lupus.... of course I have just went through the abscess on my left thigh, and it is still not completely well, and I still have the hard lump on the other thigh, but it just has not gotten larger... but it is there and should not be, and if I can ever get the other leg well, I feel it needs to come out and be biopsied due to the Lupus, RA, Sjogren's and my history of autoimmune stuff, and the medications, it could be a "sarcoma" and/or maybe just a benign lipoma, but still I do need to have the surgeon remove it.... so my blood work comes back and again I am still anemic... which I have been now for a couple of years, enough that I take B-12 injections every month, and should be taking pills daily, but with all of my other meds, my stomach just had a difficult time with so much medication....

So, then I get a call, and my Mom's "kidney function" labs, came back very "low", which means her kidneys for some reason are not ridding the waste as they should... so she went back for more labs yesterday, but I had to find a Nephrologist, and she sees him in early November.


She is still too thin, lost way too much weight, she stays totally confused about her medications, appts, even going to the store, I almost feel she is just not able to go alone right now... whatever we both went through at first about 3 months ago with what seemed to be a "stomach bug".... has worked into neither of us eating very much, nothing tastes right, and there is not much I can even think of that I want to eat... and I have lost weight also, but I wanted to... so for me that was fine... I did not lose like she did...

She is getting very feeble, and if she does not take the Meclazine, like I do daily, even yesterday I could tell she was kind of "off balance" at Wally World... and then to top that off she is complaining about being short of breath, which last time we went through that we found out she has a "leaky valve" in her heart, that lets the blood with oxygen flow backwards, thus not getting enough of it through her body and lungs... but we had fate on our side, and for the time, her cardiologist was able to contain it without open heart surgery, by reducing her fluid intake, and her taking more Lasix, which keeps the flow a bit lower, and it does not flow backwards as much...

But, now once again, and it could be allergies, it could be a touch of COPD, her age, and even her just being so ill for so long... she went through a huge ordeal with her intestines and stomach... and come to find out she had not been taking her GERD medications in months and months I guess. She was on one prescription and somewhere down the line, I guess she lost track, or whatever and she was not taking GARD meds, which was a lot of the stomach issues, and then she tends to be "obsessed" in going to the "bathroom" - and when I began to read on this, the elderly people especially if they are having some dementia issues, or Alzheimer's, they become "obsessed" with their bathroom habits... how much, how many times a day, and on and on - and when we finally thought all of it had been resolved, then she takes a medication the doctor gave her "if" she is constipated.... but if not then she does not need to take it.... but again, she did not understand, so then she began having "accidents"... and I told her Mom, you do not need to take that medication, if you are not having a problem going... it will cause you to have "accidents" if it is not necessary.... anyway, I also have told her over and over, and over again, if she will USE THE FIBER DAILY, she will NOT have issues with being constipated.... and then she will not need that medication..... Once I found out about the "fiber" that is now "clear" and is does not "thicken" up like the first ones that came out, or even the Gummies... I hate Gummires but if I take two of those in the morning and two at night... then I have no problems as far as my stomach, intestinal tract and so forth..,

So, then I wanted to get a new puppy. I've decided that even though it has not been that long since Tazzy passed away, I felt that both Bub's and I both would "feel better" and have something "positive" to look forward to and I just feel that it is a good thing for him and myself.. but I've been through the mill trying to "adopt"... I never had to give out so much information, and have all of these references, and on and on.... I've adopted several pups in my years, and even a few cats.. and of course they wanted to "know" some about me, but not like it is now.... and I "get" they must watch whom they have that adopts these animals, but I've had dogs now most all of my grown life, and cats... and I got Tazzy in Seattle for a Christmas present, and we purchased her, and I also purchased Bub"s as a puppy, so I've never had any issues when it came to adopting or buying a new pup....

So, in beetween trying to find time to go look at a puppy over in Waxahachie, and trying to take Bub's in for his shots, and nails clipped, and then I have about 50 houseplants I needed to "de-critter and bring in before the weather gets bad, and then having to take Mom for all of her stuff, and run errands... and you name it, put my own lawn mower back together, and went and bought a new gas can, since my neighbor never returned mine, and I guess I am too stupid to use the "new ordeal" types of gas holders, because I poured gas on my hands and so forth yesterday evening, just rying to put some in the mower to see if it will crank... I replaced the entire pulley mechanism, the air filter, the oil, and the spark plug, but I have heck trying to start it, because I no longer have enough strength in my arms to pull on it....

Well, I had also spent two weeks cleaning out my storage building and throwing stuff away that had been under the carport... and guess what? Do you think one neighbor would ask me if I needed help???? They even saw me this morning, regrettingly having to toss away some of my beautiful house plants, but ants have taken up around the roots, and the only thing to do is throw them away,,, and one of them was my very first "airplane" plant, the "Momma" plant, and out of it, I had between 50 to 70 plants, along with a couple of others.... so I bring my Palm in that doubled in size over the summer, and some of my other larger plants, I get them in, and then find ants in the bottoms of two of them outside.... so then I got paranoid, that these in here maybe have ants, and even after spraying them, and letting them stay out until they dry, I now am making to watch for signs of ants, because I certainly do not want those in my house....

My Chi-Weenie Bub's already has a very huge issue, with allergies, and sneezing, plus he stays "itchy" all the time... and sometimes snores... so I something he is allergic to and I surely don't want to make it worse by finding I have brought ants in the house...


I've had to miss twice being able to go see a new puppy due to running everywhere else, and now the weather was suppsed to get very bad, so I postponed Bub's Vet visit for today, and now dammit the weather seems fine and I could have taken him anyway... s that upsets me.... his nails are so long, and he will not allow anyone to touch his feet, last time I had to muzzle him, because he nipped at my Vet's assistant and I just hate having to put that thing on him,,,,,

Now my own Rheumatologist appt did not really turn out well... of all days, and I had been ill for weeks with a Flare before i went, and then finally the day arrives so I can go see him, and that is the one day, I am "feeling better" and my knuckes were not swollen as they have been, then he gives me a flu shot, and I will be damned if for the first time, the shot made me sick!!! I know they should not, but I came down running a fever, chills, feeling totally exhausted and weak for like 5 days after the shot.... I even asked my PCP and my Pharmacist if they have had others complain about it, and I know my Pharmacist said Yes, so I figure due to my autoimmune issues and all of the added stress, I may have had a "case" of the flu, and but I had a Lupus Flare, but until I had the vaccine for two weeks, they could not give me one at that moment, because it had only been a week, and it takes two for the vaccine to have its full effect... and if they had given me an injection and dosage pack then it may have made the flu vaccine less effective... so now it has been two weeks, and I still have the flare, but I feel like hell now and my fatigue is so bad, I don't even have enough strength to take myself to see my PCP...

Then there is the ordeal of finding a New "Medicare Advantage PLan"  especially for me... even though the "Obama" ordeal should have stopped the "Medi-gap" policies for "discriminating" against me because I am not 65 yet, they still do... and the one I found would cost me 700.00 A MONTH just to have a Medi-Gap" policy.

But, Untied Healthcare, Secure Horizons SUCK, SUCK, SUCK, AND MORE SUCK!!!! That was the worst mistake I made changing from Humana over to them last year.., they are liars, they are scammers, they drive myself and my Mom nuts with constant phone calls, mail and you name it.... wanting to have a "home visit" or "check my medications" and as I have told them, I DO NOT NEED a home visit, and my medications are fully understood, and I have no need for them to disrupt my life, and furthermore I AM TOTALLY PEEVED AT AARP!!!!! They should be ashamed of themselves for "sponoring" such a lousy, no  or even our Urgent Care.... it is insane.. so now I have to make that decision for both Mom and myself as to whom to go to and what type of a plan etc....

Then there is this entire ORDEAL about this "accident" that happened in March 26th 2014.. when my soon to be ex-husband as I had been told at first was accidentally "tapped" going into the Dallas area on I-45, and they spun the car out of control, Jim claims he remembers nothing, and now they are saying that "HE" initially hit the edge of the Tahoe on the back, and it went off the highway, but an 18 wheel tractor trailer who was behind Jim, was on his cell phone, and if he had not been, he would not have RAN OVER the car!!!! This had not been like 18 MONTHS ago and is still ongoing!!! Rather than "mediate" which is what we felt the whole time they would do, it appears they will go to trial, which means once again, my life turned upside down and right side out, and in all honesty, I do not even know WHY I am a part of this????? Jim left 4 months ago, and I found out, that he stands to get "double" the suit, if I AM NOT with him!!! Good reason to suddenly move back to Seattle, and me not know why.... after 13 years together, and 10 married, even with all of his issues now not able to walk, drive, and the list goes on and on, he all of a sudden gets a ticket, and flies back to Seattle.... So, later I learn that he gets "double" the money if I am not "his caretaker" anymore... and what about my CARETAKER????? I can't even get a neighbor to help me move something heavy, and now they act like I "ran him off" the ones next door will not speak, and he used to mow the lawn and help us out, the whole time Jim was here, the day Jim left, it is like I DO NOT EXIST!!!!!

Now, it appears this "could go to trial" which means a week or more going to Dallas everyday to a court, and honestly, I feel this has all been a "shaft" on my acct... he is getting the money, unlike what I was told in the beginning, even though it has caused me to LOSE all of my Teeth, have major complications with my Lupus and RA, the stress I am already under is bad enough, and my doctors continue to tell me if I don't get some "peace of mind" I may not survive a 3RD ONE!!!!!!

So, I am SICK AND TIRED OF ALL MY LIFE, TURNED UPSIDE DOWN... and I feel as if I am just a DOORMAT.... when I can "help" then everyone is after me... yet, when it comes to me needing help, everyone seems to "disappear".....

I feel like my time is so totally wrapped up in something else, or someone else, that I can't sit down to work on my blog, write my book and finish it, I feel like I've had to let myself get behind on my advocacy work - everything my life that "matters" to me, not just health wise, but my pup, and now after Tazzy passing away, Bub's and I feel all alone, and I can tell he is continuing to miss her terribly... but because of other "stuff", I could not even shake loose long enough to go look at a pup for adoption, and had the chance today, yet the weather says we are supposed to have 100% thunderstorms, lightening, flash floods, and is could even hail... well, I can't run over to Waxahachie, not knowing whether the weather might turn horrible within moments... it just now began to sprinkle here, and I could have went and took Bub's for his shots and his nails cut, but it appeared as if that weather would be here about the time I needed to go to the Vet... and alas I could have gone, never fails... so now that is postponed, and I had to postpone going to Waxahachie, as I said I certainly can't take a chance into getting into a flash flood, or powerful thunderstorm, or some idiot running over me.. which happens quite frequently on 287 when the roads are DRY, much less any rain on them....

Then it is my own health issues, lots I have "left undone" simply because I have to get my Mom feeling better, and make sure she is not having some really terrible kidney issues, or something going on now with that valve in her heart.... those things are terribly important.... yet, my life, my home, my car, my Bub's, me.... all of that is also crucial, if I a not WELL, whether emotionally, physically, or mentally, then I am certainly no good to anyone else...

It always takes me back to the "spoon theory"..... I ONLY HAVE so many "spoons" a day and it gets to the place, that I feel as if I have "less" each day.

So, when I have, let's say 10 spoons - and to do my laundry, take out the trash, put a chicken on to cook in my Crockpot, bake a cake, and try to deal with just getting a "few" of my houseplants in before the cold hits.... that is already over 5 spoons, and if I take a shower, than that uses at least 2 to 3 spoons, depending on it I have to dress to go out to town, run errands, and so on.... by the time I "fix" Bub's and I dinner, make sure all is well, locked up, and even try to get online enough to write either here, on FB, my blog then I have already "borrowed" spoons from the next day....

And if I am already not well, especially dealing with a Lupus Migraine and a flare, then that strips me of 4 spoons or more before anything else begins in a day.... then errands, medications, taking Mom to the store, or to do labs, or to shop, or having to go and pick up 5 or 6 gallons of drinking water... we refuse now to drink our tap water, or if there are bills to pay, or I have medications to pick up, and I've used DOZENS of SPOONS way too far in advance, trying to upstop my sewer line, completely redo the wiring in a big lamp... I have a ceiling fan, and I need to get it up in my living room, then I find that I don't have just ONE broken window that has been "broken" and held together with duct tape and cardboard now for months, due to it hailing, I also found another broken one yesterday in my bedroom and I have no clue to even why it is cracked all the way across it side to side.... plus in that spare bedroom where the other one is, I have another one that someone tried to "repair" by caulking up the hole in it, but all of those 4 or 5 windows back there are so brittle, and they are so loose, because all of the sealant has fallen away or had gotten so brittle, that they ALL need to be replaced or at least replace the two that are broken and then pin and glaze the others... and I have the push pins and glaze, but guess what??? I know how, but cannot find the time to do it, nor can I find the time to pain my house.... which I wanted to do before the colder winter came in, I have two gallons of brand new outside white paint, and I have already had them back once to be shaken so I could begin painting, but of course there is always something that takes me away from what I feel I need to be doing... all are important and yes, I could "hire" someone to put in the ceiling fan, and replace the windows, but on the monthly check I receive from my Social Security, there is no way, I can afford to have people hired to come to do it.... and as I said, above, as many times as I have done things for others, out of the kindness of my heart, you think anyone standing in these yards around me, will offer to help??? NOT ONE!!!!

I have to wonder where I went so wrong, that I feel I am totally being punished, and I have no clue as to why.....

As someone told me not long ago, "You are TOO nice"! Start saying NO to some of this stuff... if it is going to cause me to lose out on time I need to spend doing things that are important for myself, Bub's and my home, then there needs to be a moment to stop and say, hey, I would love to, but I am just too far behind, and I am too overwhelmed as it is, so I have to decline.... but I find it difficult to do that....

Dowes this have anything to do with autoimmune illnesses, Lupus, RA, Sjogren's, Invisible Illnesses, Chronic Pain, Chronic Fatigue, medications and so forth YES!!!!! Yes it has all to do with them... I am no longer able to DO it ALL! BUT WHERE DO YOU FIND A PLACE TO FINALLY SAY NO!.... THERE IS WHERE I AM AT A LOSS...

Life Ongoing and Fleeting, Memories of a Time that seems like a blink of an Eye ago, dealing with AI's, Lupus, RA, Friends or lack of them, & All we are thrown daily to contend with....

WOW! I bet a few of you are saying! It has been a long while since I posted so early. I used to be up by 5AM, and that all changed several months back. I began to stay up much later than I did, thus I find myself not getting up before the dawn appears. I am honestly not looking forward to cold weather. It at one time was almost my favorite time of year, especially around the 2-3 weeks of February. Not due to my birthday BUT that is when we always planned and went on our annual snow skiing trip... it happened to fall right around my birthday, and WOW, I planned for that all year long... before we even finished getting home good from one trip, I was already setting up a "Christmas fund" at the bank where I used to work, and that money was always for the trip & Christmas also. I watched the weather all the way up to that last moment, just thrilled to be going back to Wolf Creek Pass, and Pagosa Springs CO... and also Santa Fe NM... Some of my most incredible memories are wrapped around that time in my life and I would give anything to be able to go again... I am not so sure about the skiing anymore even though I would love to try once more... but that was long before knee replacements shoulder replacements, cervical neck surgery and autoimmune illnesses.... so it would also mean in order to snow ski, back to walking that 5 miles a day I did for the entire year before we went.... and even at that, it still wore me out to ski especially if we skied 4 days rather than 3... I did have several video's of us, we took a camera and taped us a couple of years, and right now I am not even sure where those are... since then with all of the moving etc... they have been placed gosh knows where, but I still can replay each moment in my mind... my favorite part which was like a half open pipe, the sides way high up so when I skied, I went up one side, down into the "pipe" and back up the other... everyone knew if I was difficult to find that was where I would be LOL....then there was the time, and I had a pair of NEON GREEN snow pants/snow suit - and it was a pretty sunny day and I had been headed through some trees, and as I made one last little jump, one of my skies decided to stay behind, so here I was sliding through the trees on my stomach flat and just laughing... some guy and his wife were behind me and saw it, and he yelled at me "Looks good from behind here"! OMG - His wife hit him.... LOL! another one of those "moments" that get etched in our minds, and something that I will never forget... like the outdoor hot tub and it snowing on you when your were in it, and the indoor pool we ran and got in as soon as we got out of the hot tub... and the place we ate breakfast each morning, where the Elk came came a hill on the other side of the road and we watched them each morning, or the Mexican Food place we ate at when we got back from skiing - and they would fix me a "hot toddy" because I would always come in with a sore throat... LOL!!!! and how Pagosa Spings (which was like "Hot Springs Arkansas) due to the hot springs there the entire town smelled like rotten eggs.... LOL... you just got used to it after a day or so... and it did not matter because.... I WAS SNOW SKIING! I could sit here and almost write a novelette about my experiences going skiing for many years there during my 30's I believe.... and why that came to mind this morning, I am not sure, maybe the Winter/Fall chill in the air, or the fact, that rather than think about ALL I need to get done, I would much rather think of just how incredible those years were for myself, friends and my kids even went a couple of times... that was when Amanda my daughter was probably about 8 or so and the first time I sent her for "lessons"... she came walking down the hill with one ski in her hand... and I thought she was hurt... no, but the tree she ran into was bruised and her ski broken! LOL! She decided she did not need lessons, so off she went on the "bunny slope" herself, ran into a tree and busted the boot off of her ski first rattle out of the box! Thank goodness they were rented and insured so we got a new one right away! :) Those years have come and gone, but the memories made will remain brightly lit in my mind forever.... (or I hope they will).... Lately, life has been nothing more than one big ball of knotted, tied up, strung out, a mess of a ball of thread... it seems everywhere I turn there is something I need to do, somewhere I need to be, or an errand to run, medication to pick up, and now I have to all a plumber today... I thought I had remedied my problem but I have not, thus now I plumber has to be called and I don't look forward to that... it does not take long for a bill to get large when you have to call in a professional... in all of my undertakings, as FINALLY I FIXED A LAMP that my Mom had and it quit working. It is a pretty lamp, nothing wrong but I knew the "socket" had gone bad in it... well I bought the kit, with even a new cord in it, just so I would make sure ALL was new... it took me about 5 days in all to figure it out, and even though it was not difficult, in my head I had a portion that I was seeing to be more difficult than it was... so on Friday, it dawned on me what I was doing wrong, and sure enough, I got it all together and working! So, my DIY skills can work still, sometimes it just takes longer than it used to... same way with anything now days... I find myself yesterday in need of needing to sweep well (Swiffer), then "Wet Swiffer" my hardwood floors and mop my kitchen... and then I needed to vacuum, dust, etc... BUT, it took me so long to just get the hardwood floors done, in between all of the other "little" things I had to do, that by the time I was ready to vacuum, it was already after 4PM, I had told Mom I would drop by an lite her heater again, so I had to stop, decide to vacuum "tomorrow" so today, and then I wondered why it took me so long to do those floors??? I used to have been able to clean the bathroom, do all of that vacuuming, dusting, mopping the hardwood flooring, and so on, and still have plenty of time... but not anymore... for one, my energy is not what it used to be... I am much slower about things now... I had not been to church in 2 Sundays to do being sick, so I wanted to make sure I went yesterday. So, even though I knew I would come home to "chores" I got dressed and went to church first...yet by the time I ran home, changed clothes, went and picked up a couple of things from 2 stores, got home, and done that cleaning, it was already 4PM! By the time I got over to Mom's, lit her heater, visited for a bit, and got home it was already almost 5:30 and I had no clue what I wanted to have for dinner... and Bub's was looking at me like, "Hey, you have to feed us!" LOL!!! I almost settled for PBJ Sandwich, but I had some leftovers I managed to warm up and add a bit to, so he and I had a good dinner.... I guess he did he was not really even wanting dessert later in the evening when we watched a movie! Now, once again it is Monday - another ONE OF THOSE! I am sure that sounds silly for someone who is disabled, and does not have to "leave home" for work any more... but you know, I still have as much if NOT MORE to do now, and a lot less energy to deal with it all... so "Monday" is also one of those "Mondays" for myself also... it is trash day, and the beginning of usually errands, doctors, meds, running, phone calls and "stuff" to take care of... and that is exactly right... I have a list on a smaller yellow pad BUT it is 2 PAGES long! So, just because I am no longer "employed" outside of the house, I still have a ton of stuff to take care of... I need to have some of my meds refilled, and call to schedule an appt for my Mom at one of her doctors, and take Bub's to the Vet in the next couple of days, he needs his rabies shot and his back toenails cut which I DREAD! Neither of my dogs liked their feet touched... and he actually "nipped" at the Vet's assistant last time I had him in, so that means I have to "muzzle" him and I hate that!!! Thus of course his nails are way too long and no matter how I try he will not let me cut them... I have tried every thing in my power to get him to let me cut his nails, but him and Tazzy hated their feet messed with... ONE THING I WILL do differently with a new pup.... CUT THEIR NAILS RIGHT OFF MYSELF... and avoid having to take them in, have to muzzle one, like Bub's, and it saves a great deal of time and heart ache for me, because I just hate having to put that thing on him....and I even tried at home at one time to muzzle him, but he is so strong with his front paws, that he can pull it off, if I don't have anyone to help hold his feet down while I do muzzle him... so to the Vet we go, and I know she will faint, because most women would envy how long my dogs nails got and get... it is just nuts... but since they are in the house, they don't wear them down like outside dogs do....

I've been in such a tangled mess with my life in the past several months... I feel as if I am NEVER "caught up" - I always feel like I am 5 steps behind what I need to be doing, I am so slow at everything... I even had my hair cut all off short, so I don't have to take time with it because I feel as if I can spend that time doing something else other than messing with my hair...but the sad thing is I bought color for it gosh, 3 or 4 weeks ago I guess, and I STILL HAVE NOT found the time to color it! Something else always seems to take priority or by the time I may find a moment to do it, I am too tired to fool with it, so here it sits on my desk, as a reminder of one of the MANY things that need to be done....

As I stopped a moment to make out a Birthday Card for My Granddaughter, Heather, who will be 18 on the 30th of this month, again memories flood my heart, she met me when she was only 2 years old, and "Nana Pam" now is what her and both of her brothers call me. I've been able to "watch" them grow up through here, Facebook, - my daughter has been so great about posting all of their vacations, school functions, prom, homecoming, football season, Heather being a cheerleader, in volleyball, their vacations, the boys and all of the excursions they go on with their Dad and their Mom, my daughter Amanda, and again, how time has flown by so quickly just makes me wonder how life can go by within the beat of a heart, within a breaths space.. it seems I just met her - a tiny little thing, and here she is all grown up about to be 18 and off to college! My how life can truly rush by... at times I am sad because I am far enough away that I have not been there physically to witness all of their triumphs, but as I said my daughter blesses me with so many photo's of all of their special times that I feel like a piece of me is always there - watching as they grow into young guys and soon Heather a young woman off to college to follow her own dreams.

I often "feel" for our kids now days. This world has truly changed so much, and in many ways, NOT GOOD! There is so much more rivalry, rather than chivalry out there now... where there used to be goodness and gratefulness, has been moved to being greedy and just down right hateful and mean.... people are "bitter" about so many things, and of course in some ways, they have the right to be bitter. When you stop a moment, and think of all the horror daily not just in other countries but right here on our own soil, in our schools, colleges, Malls, everywhere there are "people" there seems to be a "person" which is is difficult to call someone a "person" when they want to do harm to other innocent people... but it is all around us... NONE of us "immune" from that fact.

Yet, there are still "good people" those who are kind and generous. They do for others, and not because they have to, but because they "want to".... I have a dear friend who is really going through a very tough time .... she is fighting the big "C" word, after having it back a first time while we were basically still in High School - and then here it is 30 plus years later, and again she is battling it... trying to work, never has a bad thing to say about anyone else, an is always so very grateful for those around her that do all they can to help, out of the kindness of their hearts, not because they "have to", but because they "want to"....

And I partially because most of my family is gone, My Dad and all of his siblings, parents and so forth passed away, and even some of his cousins and so on also gone. I was basically an only child, and have a "half brother" but he was at least 15 years plus older than me, went into the Air Force and spent 20 years much of it overseas in England. He retired from the service years ago and then they settled in North Richland Hills in the Dallas area and he was working for one of the big helicopter flight simulator places I believe. So, my Mom's parents have both passed away, she has lost both siblings, an older brother and his wife, and lately her younger sister to cancer... so when it comes to "family" especially close family, I really only have Mom and my two kids and of course my daughter's family. Even at that they are hours and hours away, and my son, also at least an hour or so away, with a job of his own, and life to also deal with.

So, last week when it came time to try and "adopt" a pup I did not realize the entire realm of red tape involved. It has been years since the last time I actually adopted a cat or dog... my last two, Tazz was a Christmas present and we bought her in Seattle, and Bub's I also bought him when he was just a puppy.... so when I get this email wanted ALL of this stuff and THREE references - asking ALL about my home, yard, how I was with my past animals etc... I was like I don't have that many people that are here close enough to give me 3 of them... but Jim was gracious enough to fill one out and my Mom helped me out, and hopefully with those, and everything I've told them, along with Vet records from my current one, whom is just a sweetheart and I am so happy she is back in town also... we went to school together... and then my other Vet that took care of them for years before Venetia Shafer at BlueBonnet Vet Clinic came back... I am hoping that is enough .... I've been racking my brain to think of someone else... of course my daughter could help out or my son, but they are so busy, taking to time fill out a long form for them is difficult... with kids, jobs, home and so on, I can't believe they keep up with everything as it is....

I guess that is the one thing I hope "joining the Methodist Church" would help me with... now that it is just myself and Bub's... I have Mom, but really no one that is a "close friend"... and a couple of people "close to me" but not like we do things together etc... so I was hoping by getting involved back in Church, and hoping to find some other things to participate in, I would find some "friends"... and we all know with the autoimmune illnesses, the Lupus, RA and so forth... my life "daily schedule" varies from one moment to the next... depending on how I feel, or how Mom is doing...

I also realized that if it were not for my Mom, I have no one to "assist" me with anything, say this plumbing issue... or anything like that... I don't "know" enough people well enough in town, even though I have been here for all my life for the most part, I guess due to my "life when married" I kept myself more at home, almost locked away, busy with those things, I did not get out in the community to meet others... and here I am 55 years old... and unlike a couple of my friends, or like my neighbor, they have "friends" that are helping them building a two car HUGE GARAGE that is as big as my home! I "Lack" that type of support system... I am "new" to the church, been going now for about 3 months, but sick some of that time... I have not gotten out and about to meetings, or even to the Saturday Farmer's Market and so forth, so I must find the "funds" to pay for my plumber, or have work that is so in need on my home, or any and everything that comes up, there is not anyone I can have that could help out... and you know, that frightens me honestly... of course I have my Mom... and my daughter and son, but they are as I said hours away, and have their own jobs, lives, and so on... so I am upset with myself... that I have allowed myself to stay "almost too alone" to have any kind of support system... my neighbors have "helped" some, but I have been quite honestly upset with one in particular... he used to always be here asking if we needed anything... when Jim was here, he constantly was mowing the lawn, and I usually paid him, even when he said he did not want it... but I knew they needed the money at that time... and my other neighbors have a very ill Mom they take care of and another one is up in age, and she needs help herself... so it gets to this spot in life, that you begin to think, what would I do if I needed this, that or the other... I can guarantee my Social Security Check pays the bills barely, and that is all... in fact I am very upset with my car insurance, it seems every time they bill me, that bill is higher, even though my car is older... and now I must spend Lord knows how much time trying to find a "new" and hopefully better Medicare Advantage Plan... the one I chose for this year has sucked more than I can say, and they are someone I would NEVER ever recommend to anyone! I am extremely disappointed in AARP for even "sponsoring them" - they have done some really horrible things this year to their patients, and I am just mad as hell honestly, because now I must spend days trying to find another plan that will cover ALL of my doctors, my medications and that is a hard thing to do now days... our doctors are all shy of even Medicare and a supplement these days... they DO NOT get paid for months and sometimes a year or more, thus they are leery.... Well, I need to get busy on other stuff as you can see, but I wanted to take time to first tell those who do help THANK YOU! Whether a kind word, or support of my advocacy etc.... I appreciate all of you.... and to let you know there are many things right now in my own life that are frightening.... I am going through a great deal of emotional distress... and "losing" a relationship after 13 years and then losing Tazzy after 3 years, have really put me in a place of even more distress.... there are other things playing into this but, I shall stay quiet for now about those.... but to all, remember the great memories and hold them close... remember time is fleeting, and before you know it, you are in your mid 50's and wonder what the heck you really have done in this life.... and to hold on to whom and what is dear to you.... Rhia

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More News You can use - an article about what a patient with Lupus wished other people without it Understood and more...

I began this "daily paper" and it is based on the information that I would like to share with others. Health, Technology, sometimes specific information about cancer,Lupus, RA and other illnesses... but usually a couple of times a day I refresh it so the latest news comes up when someone reads it! I've not said much about it yet, since I was trying to get a feel for if it would be something worth my time... and now after several weeks, I do feel it brings forth some very interesting information that is specific and pertinent to what I want to share with my family friends, and readers, and of course now my blog people! So, there has been an add for it on the right side of my blog for awhile, and I decided to post a blog post about it now, so others can see what it is like, and see if some of the information is helpful to you! The link to the latest addition is above! Please tweet, or share it if you feel you would like to pass it on, and if you want please comment so I know how you all feel about the articles.... more to come soon Rhia

IF my typing is "off" I broke a pinkie nail off below the quick yesterday evening closing my back fence! So, I am trying to catch any thing I misspell :)   )

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

What "Out of the Mouths of Babes" Taught Me this Morning about Lupus and Advocacy!!!!

I have to post this in regard to ALL of us EFFECTED by LUPUS!!! My daughter called a little while ago, as most know she lives about 8 hours away around the Corpus Christ area, and she was talking about Selena Gomez having Lupus. I told her I had just began to read that, and she said that the woman she works with, has a son who is 24 years old, and he was diagnosed with Lupus... recently he almost died due to it almost shutting down his kidneys.. and then "out of the mouths of babes comes" This is not a "rare" disease, it effects so many and there needs to be much more awareness about it!!!! As I almost fainted because of course here I am her Mother who has it among other A illnesses, and of course I am a huge Advocate for Lupus and RA...Sjogren's and so forth. So, the "point" here it dawned on me, that first of all of course she knows that I have Lupus, but her thoughts have been it is a "rare" disease, and she knows that I help to spread awareness and then it dawned on me - 



UNTIL WE make LUPUS a COMMON HOUSEHOLD TERM like CANCER - never will all of our advocacy be enough.. even those out there educated about it, with a family member with it, like a Mother, and all she knows about me, it still to her seems to be a "rare" issue - then when she said, but Mom is is NOT - the news always makes it sound like some "rare" disease but it is far from being rare... it touches MANY people's lives daily and then she said and they give "chemotherapy" medications for it - that Selena Gomez is on a much smaller dose, but it is a "cancer" drug that is used"- now my kids know that I am on medication and neither of them live close enough to "see me" when I am ill, or see what the doctors say, and so on 0 but of all of the advocacy work I do- I "missed the boat" in telling my own daughter that I am TOO on chemotherapy type medication just also in a much smaller dose.... I felt as if in my own way, to those closest to me, I have FAILED miserably in my "activism" and voice for these diseases..... again that is when it dawned on me until we QUIT having people think of these diseases as "rare" and they become as "well-known" as cancer, heart disease, diabetes etc.... then we shall never HAVE ENOUGH AWARENESS out there.... I told her that kids as young as 9 MONTHS old can be diagnosed with JRA.... and I did not have time to explain more about how that is found, but it surely hit me square in the face, that our activism, advocacy, and awareness need to be MUCH, MUCH more...Lupus as I said, needs to be a "household" word......


So, I now am even MORE AWARE that we need MORE AWARENESS! All too often these types of illnesses are considered "rare" yet as we know now, daily, we hear of many, many more cases, and people that have it Lupus, RA, Sjogren's and such for YEARS and they do not get diagnosed until after they are much more ill that they should have to be!


This to me is just NOT ACCEPTABLE and it should NOT BE acceptable to any of us.... whether you have Lupus and so forth, or a family member with it or a friend, and so on, awareness is they key to finding a cure, a reason for, how to STOP LUPUS before it attacks someone so young, that their kidneys fail..... Her comments to me certainly gave me chills down my back, to think I was diagnosed about 2009 or so with Lupus, RA, etc... and even though I have made it very well aware to both my kids and my Mom and other relatives, friends and such... and even put my heart and soul into all of the Advocacy I can, it is NOT ENOUGH1 STANDING on those White House Steps in 2014, and telling CONGRESS having these disease is NOT ACCEPTABLE and yet each day we grow it seems almost further from education people about this not being some very rare something, but it is a part of MANY and THEIR EVERYDAY LIFE!!!!!


I have to keep DIGGING away and trying to do all I can to spread information about Autoimmune illnesses and just how deadly they can be.....

WE must ALL do so!