Answer to New Massive Pain in the First "Square" We looked at? Back to it I think...

Morning All... Well for me it may be back to square one on the massive new pain issues. After all I have been through for months now, over the past two days, the pain is so bad, once again I am now thinking this pain pump is not doing something correctly. I have once again trying to survive this gnawing, burning pain, much of which is in my legs and feet, but I am also having pain all over my body, even the joints that I have had surgery on. I have noticed even my arms and legs feel, "weak", as if they are almost like rubber at times. I felt at the very beginning of this in January, it was all due to the "flu". From there I was totally convinced the pain pump had stopped, or done something to make the medication not flow all the time or correctly. We changed the medication in the pump, there have been no "warnings" from the pump itself so far, but my body is certainly warning me something is wrong. When I had the pump put in, in late 2010, it was just a matter of a few weeks of medication "titration" that I was a different person. Of course nothing will "cure" any kind of chronic pain 100 percent. I do not think that is even the way anyone with any type of pain issue should feel, unless it is acute pain, such as a tooth ache, broken bone, etc... something temporary, that can be fixed, and heal. With Chronic pain, there are so MANY CAUSES, so many things that can effect it, from weather, to what you do or do not do, stress, and the list goes on and on. Nerve pain and RA pain... the pain of FM, CFS, and so forth, they are all never completely gone, but lots out there can lessen them to the place that you are able to "deal" and live in enough relief mode to have a half way normal life. But, as with myself, all too often it takes years, and many doctors, many tests, and doing the same thing over and over again, giving the same information, trying 100 different medications, alternative therapies, and you name it... before you find just the thing that works for you. I went from not even having to take an oral "break through" pill after the pump was correctly dosing my meds, to now even strong pain medication orally, along with whatever this pump is doing or not doing, is not giving me relief enough. I am "sequestered" (seems like the proper word) to pain, even worse than it was before. It is insanity. I have been though enough tests again and doctors for a small army. EMG's, NCS, blood work, a artery biopsy, (they have not done a muscle biopsy yet), more CT scans, 4, yes I said 4 NEUROLOGISTS, my pain specialist, my regular doctor, and I have lost count of just how many times I have seen them, including my Rheumatologist, and had tests ran. I have "other" issues, like new "nerve pain" stuff, from what the EMG shows, it seems there is a possibility my RA medication may not be doing its job as it should, and I have an issue with some abnormal blood work, that leads to muscle destruction, which can cause severe pain, yet at this moment we are not even sure why it is going on. They took me off my "statin", because they are known "rarely" to cause this anomaly, but after I came off of it, even the last test was still positive for something that should not be there. I had another test ran last Friday, but do not have results yet. I guess I am going to have to ask again myself what the results are. I am still in severe pain, and something it just plain wrong.
I began researching my pain pump again this morning. Their web site is full of great information, and can be a terrific help when it comes to these incredible machines. And there are times they do "fail".. either from the machine part (it is a microprocessor of course, and then the catheter can fail, by kinking, pulling loose, eroding etc... not something that happens often, but all do happen and sometimes the only warning is like myself, sudden new pain, that does not really make sense.
Life is just not fair at times. For some, life is just not fair and can be rotten more than others also. I question my "actions" in life, trying to figure out why I feel I am being "punished". Have I lived in such a horrid way, that this is my "cross" to bear? To live in horrible, almost inexplicable pain, and can't find answers, or reasons, or some fix that does not go away? It is a burden I have carried off and on through out my entire life. It seems to wax and wane, almost as the rivers, mountains, seas, and moon. Coming and going, ebbing and flowing. In between I have beautiful glimpses of life without suffering. Those moments I cherish. I hope to have some today, yet I am already suffering, and trying to ignore it. The realms of our bodies can be a blessing or a curse... thus mine tends to be cursed more than blessed.....

Rhia

Lots of things "resolved", others to pop up, still baffled by my issues with severe pain in my legs & some other joints...

Well, I will say the weekend was pleasant. I got a great deal done, plus got to rest also. I began work on a new quilt (FINALLY), I have been wanting to begin piecing together now for at least a year, possibly more. Between surgery, illness, and all of the other stuff life "chunks" at us, I am just now finding time to start on it. This week for a CHANGE, I "Hopefully" have no doctors visits (like I said I hope), and have completed several things that have been outstanding, as far as around the house, paperwork and so forth. I needed a document completed, that I thought would be an "easy" thing to get done. Turns out I ran into issues with one of my doctor's office managers. He was a real jerk honestly, which is nothing new. But, the entire situation that has been building now for awhile (I am not the only one that does not appreciate his derogatory ways), thus it in a way got settled last week. I am hoping it has been understood between that office, and myself. I hate to have to "fight" for everything when it comes to medical things. It if is not a prescription, it is an appointment, or the insurance company, or the pharmacy, or the incompetancy of someone, and lack of caring about people, and their own job. But, I can say between a prescription that I had to go to "bat" on, to an outstanding insurance claim on my Mom, that I finally had to write a long, detailed letter on and send it to a physician that has a stake in this surgical center, to finally getting "hopefully" a phone call stating my deep freeze ((it has now been over a dozen phone calls, emails & over 12 months of mess) to get this deep freeze that is just not sealing right, replaced. I added it up last night. If the company and I am going to mention them, "Haier" would have just "replaced" it at first, rather than try to fix something that had a flaw from the very first at the factory, they could have saved themselves well over 800.00 or MORE in time, parts, labor, phone calls and head aches. Now they still have to bring us a new one, and pick this piece of crap up, after all of their loss. It is insanity!

Actually, going quickly back to the entire "medical" situation. I just read a very interesting article about "doctors and their lack of communication" with patients! That is a subject I often speak about myself, as well as hear it from scores of online as well as close friends and family. It is one of the most frustrating things to go through, and it makes for a patient not understanding their own health needs. Plus it also causes a great deal of missed information if the doctors do NOT listen to us. Not two days ago, over that paper I needed filled out, I said "IF they would have given me 2 minutes" I could have explained what I was asked to do, and then the doctors office personnel would have understood my position. But, instead, the form was literally "thrown back into my lap" by this person, and I was basically told,  the doctors says go to this "other type of doctor" to get it signed. Well, in the first place, I did not even NEED that "type" of a doctor, and why would I go to a complete stranger to sign a form, that needs to be signed by my own physician that knows my entire medical history??? It was totally stupid. But, again this article is talking about just how patients do not understand, or doctors miss vital information because they do not listen, so tests get done wrong, or don't get done. Or worse, tests you do NOT need that drive up medical costs are done and not even necessary. Plus it makes for a mis-diagnosis that could result in issues of possible law suits. Having an extremely STRONG "communication" level with your doctors to me is even more important than some of the other things. Items that might get overlooked, are put out there, thus both parties get more correct information, which results in less office calls, visits, or hospital stays. It is a win-win, but many doctors were never "trained" in patient handling. I have heard it all. The ones that really drive me nuts are the ones that act like you are "nuts", or stupid. You come in, with possibly information you learned on line, about your symptoms, and you want to ask questions. Maybe they might be relative to your condition. Yet, you are quickly cut off by a disgruntled tone and look, along with something to the effect you do NOT know your self as well as the doctor does! Now, I understand THEY are the ones who went to school, etc... BUT an "INFORMED" patient about their on conditions, body, feelings, and symptoms, is normally a HELPFUL patient! We tend to give more information to HELP get diagnosed, not try to act as if we know it all.As my husband says, when we are chronically ill, we tend to concentrate our "research" on that one or more illness or illnesses, thus we get a great deal more understanding about one or a few things, which can be extremely helpful. Whereas doctors, have to know so much, about so many things, they may just "miss" something due to the fact they do not have time to do that much extensive research on something like RA, Lupus, FM and so forth.

Okay, enough of that. Off my "soap box". I could talk about that subject for weeks.

Back to getting some things caught up. OF course that means "Murphy's Law", or more like "Rhia's Law", when you feel caught up, look out, something else will happen, break etc. I got that paper fixed, we did finally get the right part for our clothes dryer and it is fixed. Our music room is cleaned out pretty well, and things put up in the attic. We found out the parts we need for our leaky kitchen faucet, and I ordered those. I got my Mom's income taxes done, signed, sealed and sent off yesterday. She is doing well, and I am so thrilled about that. The weather is getting nicer by the day. But, on the other hand, since we had little to no "winter" weather, the bugs, vermin, and those damned "lizard" things I hate are already rearing their ugly heads. I saw the first one on the porch last night dammit. No matter what anyone says, those things freak me the hell out. And nothing gets rid of them! I got a new hummingbird feeder in also, that is supposed to be "ant and bee" proof, thank goodness. We lost hummingbirds (well they would not stay) last year due to the stupid bees. We know we have a huge nest close. They were on our back lot in an old piece of a bus, but we think they have moved. Yet, they are close enough that they can find that hummingbird food if it leaks out the least bit, they can find it. Thus the number that come so suddenly, makes us know they do have that hive fairly close. We used to see them coming out of the side of the bus, but we did not last year. Thus we think they may have moved, just somewhere else, but still close.

I am hoping to get some work done on my 2nd poetry book this week also!:) Of course, if the days this week go by as fast as yesterday, it will be next Monday, before I even know what happened. I felt I got little done yesterday, yet it was almost 5 pm before I even looked up to see the time. So, I am going to try my best to combine house hold chores etc, with a week of reprieve hopefully from doctors appts, and be able to work on the quilt and my book! I still want to meet my own "deadline" on the 2nd poetry book. I really had my heart set on getting it published by the end of May. But, that will be here before I know it. So, I have a great deal of work to do before that deadline. If not, possibly by mid-June, depending on all of the other things in life that decide to interrupt us.

Take care... and thank you for "listening"... please comment any time.. I would love to hear from you!!!

Rhia

And The Days Goes By - With Nothing Else To Do...

Ah, anyone that happens to be a huge fan of my greatest "mentor", the one person I have I guess you may say "idolized" for many years, she who inspires me, the one that gives me words, when it seems they fail me, and she is so much of a mystery, yet so open to me, Stevie Nicks. The "Title" of this blog, is a portion of one of her songs, and I shall let those that know her well guess which song...

My writing today, consists of some relief, some concern, some disdain, a great deal of aggravation. and I guess the list goes on, as to what feelings I am coping with today.

After a year or more, after 6 or 7 Doctors (I have lost count), after endless tests, blood work, CT's, eye exams of every kind, some I have never knew even existed, after even being put to sleep and have a "temporal artery biopsy", going through Neurologists, and even Higher Specialists, the news yesterday about the "double vision" I have been experiencing for a year was a relief first of all. But talk about feeling also feelings of "I told you so", I knew It all along, I said it in the beginning, what a waste of our time, our money, and much aggravation... we find out that more than likely the Lupus, along with some of my other chronic health issues & medications are the culprits. From the beginning, I had said I felt it was just one more symptom of the Lupus, MTCD etc. Yet, there I went through the most extensive work up any one person could go through... with the exception of BRAIN SURGERY!, every damned test that could possibly be ran was done. The new doctor yesterday, another "Neuro-Ophthalmologist", confirmed my suspicions. He did more testing himself in the office, and ones that I have never encountered. But, when I began to look them up. they also were very specific for double vision, and how to correct it with the proper "prisms" in my glasses. Well, that was the very first thing my own Ophthalmologist did when I saw them. They "corrected" the double vision by putting prisms in my glasses. they at the time I think suspected it to very well be something to do with Lupus, but due to my health issues, and the complications  I have they felt a specialist needed to go into further testing to make sure I was not dealing with yet another chronic illness, like MS, Myasthenia Gravis etc. or also as the idiot, insane doctor did the biopsy on the temporal artery. I got the impression that this new doctor yesterday may have ran some of the tests that I have had, but I gather he may not have went into as much depth as the others did. We were of course relieved at first. But, we were also disgusted, pissed, upset, disappointed, and a number of other things that first of all, I thought it all along, and should have "listened" to my own feelings about all of this, plus if one of these others would have made a damned "diagnosis" rather than continue to jerk me around all over the universe with this. it could have and would have been over months and months ago! The amount of stress, trauma, testing, money and time that went into all of this was ridiculous! I "get" that with my amount of complications they take "extra" precautions, but I feel that this went far above "normal" precautions. Second of all, of course, there is no "cure". My only way to resolved the "symptoms" is to wear the "prismed glasses" which will "trick my eyes" into thinking the brain is sending the signals correctly and my muscles will be tricked into looking both the same direction. What is happening is that the signals go to the eyes from the brain, so the muscles of the eyes will line up the same, and you see one image. My eyes due to a weakness of muscles especially when I am more tired, can't hold the 'signals" to be straight together, thus one eye travels off a different way slightly, causing the double vision. The doctors "goal" is to give me the proper prism and proper amount in my glasses so I never see double vision when I wear them. So, I already have a prism in both of mine now, and I have a new prescription that will be a stronger prism, plus my vision has changed a little, thus correcting the double vision even more hopefully, maybe enough that this does the trick for good. But, there is much more he can add if need be.
All of the crap I endured, and both of us, plus my Mom and family endured to find out it is what I thought anyway. Then they wonder why people don't like going to the doctors and dealing with all of the "drama", time and expense. Often it is just like this incident, it winds up being something you already knew and it is a "benign" situation anyway. Other than my regular eye doctor not being able to say for certain it was the Lupus, they "corrected" the issue from the beginning, and probably could continue to "upgrade" the prism as needed in the future if it is needed.
Our part did come in and it fixed my clothes dryer problem!!! HOOOOO RAYYYY!!! Now I have to catch up on all of the laundry... not too bad with the two of us, but more than usual of course.

The weather SUCKS! Yesterday a.a. on the way to Dallas it really sucked. The rain was so bad, along with the blowing wind and it still being so dark, you could barely see the road and I saw several getting off to wait until they could see to continue on. Of course we had rush hour traffic to deal with, and needed to be at the doctor online, thus we marched on, and got there without any problems, but on the other side of the highway as we reached downtown Dallas, they had a major pile up!!!! A Fed-Ex truck, and several other huge trucks were jack knifed, and then many cars also wrecked. So, that was not a pretty sight for sure. That is why I HATE DRIVING IN BAD WEATHER!!!!! Especially in lots of traffic and on busy highways.. it is just pure dangerous...
Needless to say, I am worn to a frazzle today. Everything on me hurts, and my mind, body and spirit are all just exhausted. My plans are to NOT leave this house, but do laundry, and rest today. I have to get to feeling better so I can sew on my quilt and work on my book!!!!! I still intend on making my deadline!



The other issue of course is North Korea. I am just all up in arms over the entire thing. I feel their "leader" is a total raving insane lunatic! And I am not very optimistic. As I told my husband last night, all of us better have "our" business straight with our "Maker". I am feeling that a nuclear or chemical weapon situation is upon us, or close enough to us with allies that we WILL feel the effects of it. I see it turning into WWIII honestly. This guy is totally psychotic, and he has brainwashed an entire country to totally believe him! Talk about one scary situation! Those people hate us, and they do not know one speck of the truth about us, about any of the world, etc. All they know is lies that have been fed since birth. I feel he has no remorse, and no "feelings" for humanity. IF he harms his own along the way, I feel he could care less. It is truly unbelievable that situation is such dire straits. But, my thoughts are I take it very seriously, and feel that as I said, we better have our hearts set in the right place. I do not want to sound like some kind of weirdo saying "The end is near"... but I tell you I am totally beyond a little leery about all of his threats....



I end today with did you "find out the Song" the name of this blog today lyrics are from by Stevie Nicks?

Easter Blessings, News on A Medical Center Specializing in Chronic Illness, and More...

Lots of bits of great information today! First of all, wishing everyone a Blessed Easter! Whatever your beliefs may be, is not the main issue... the main thing is we all would love to have peace... of heart, of mind, of body and soul. So, I wish everyone a day full of peace, of joy, of family and friends, laughter of children looking for those hidden eggs, and all that today means for you and yours.

I had seen the the "mini-series" "The Bible" is on the Discovery Channel, and thought I missed it. IT appears to really be a great movie, however your beliefs stand, I was really intrigued by the small bits I saw advertised. Enough that I went and found I could down load it all today. There are about 5 different two hour shows to it, so it will be one to watch over days to come for sure. Just a quick thought in case anyone is interested.

Now for other things. I was reading the news this morning, and found out about a new clinic in Scottsdale AZ, who specialize in treatment of chronic illnesses, such as Lupus, FN,, CFS, Chronic Lyme Disease, and also Cancers. They seem to have a totally different view of these illnesses, believing of course, that Fibromyalgia and Chronic Fatigue Syndrome are very REAL! That is not just some "made up" thing to use when doctors have problems figuring out difficult illnesses such as these, or the ones that think women are "depressed, hypochondriacs, nut cases" of whatever. They seem to belief all of these stem from a particular virus, (which I have thought for a very long time that FM, CFS are some how related to Lupus, RA, and all of the other autoimmune illnesses) and that it is these viruses that need to be treated, because they are at the core of why these illnesses come on. As often said, you may carry this around for many years, then a traumatic event, a wreck, an accident, a loss of family, even a stress such as a wedding, etc.. maybe something as benign as having a tooth pulled sets these viruses suddenly in motion, and thus we come down with these life-altering chronic diseases that can just totally ruin our lives in so many ways.

Here is the URL:  http://www.envita.com/

I hope you will check it out. I was truly bowled over with some things I read there. They do make sense in many ways, plus they treat the "entire person" and not just pushing some pills down your throat.

Also, horrific news in a neighboring country Kaufman County TX. They found their District Attorney and his wife shot to death yesterday in their home. They feel this is connected to the murder just aouple of months ago of one of their Assistant DA's. It happened on a work morning around 9am, right in front of the court house. Someone shot him in the middle of the day and got away. I even read that the gentleman in CO, (an official) opened his front door and someone also shot him standing in his front door at his home. They talked as if they suspected the three slayings may all be some how related. I know it rattled me. What a horrible situation.

We are already battling I am sure with the notion of a nuclear situation with the idiot over in N. Korea. It is difficult to fathom that one young man could have that much power over a country of people. I was reading this morning about how he does not even allow them internet, and they sure never get the truth about America and our people. Those people over their think we are horrible, and that we live entirely different than what we do. It was just ridiculous the things I read that they are told there. When you read a headline that says something like "N. Korea's Ominous Bluster" you can't help me be frightened that his insane actions could lead him into making one mis-step are all out nuclear war begins. I know we don't like to think about it, but how can you not when you hear what is happening over there. Things are almost a nightmare in our own country, and some of what is going on, but that over there and those threats are nothing to sit around and laugh about I don't think.

I had talked about my latest venture in making a new quilt. I have had the "fat quarters" of material now for a while. I bought them at a huge discount a while back, knowing they should come out making a Queen Sized Quilt. I already have a backing material, thus other than having to possibly purchase more battling, I don't like much putting it together. I have not been able to get to working on it over the past months due to my own surgeries, illnesses, and everything else in life that goes on. Thus after being able to have a break from feeling so rotten, I got out the sewing machine, and all of those pieces of material, and put a quilt top together over the past couple of days. LOL, I have to laugh at myself though. I was going to make it "plain" for the most part. The material is all different colors, thus it is a patchwork of color for sure. And I was just going to put it together like it is, with some material I have had for a while as the backing, that is kind of a patterned very light peach and white, with the batting in between, and sew in the seams to "quilt" it down. Then yesterday, I got out a couple of the books I bought about quilting and then got to thinking about doing an applique or doing some other type of stitching into it, etc! I don't want to get too carried away with the "fancy" things, because then I will get disgusted with it, and not get it completed. So, after getting the whole thing sewn together, it dawned on me, if I were wanting to do something special on the individual squares, like an applique, I should have done that BEFORE SEWING the entire thing as a top!!! LOL, now if I decide to do something so technical, that means having to have the entire heavy quilt top at the machine all at once. Which is fine, and I may not do that particular thing anyway. But, it just goes to show I am out of practice unlrss I a hemming pants, or doing something simple. Hell, I got confused in putting the thread into the machine correctly, and had to get my book out to make sure I was doing the right. It had a "self"threading device on it to thread the needle, and I have still not figured that out even with the book! It just does not make sense to me the way the directions say. So, as usual, I thread it by hand... easier and much less stressful! :) So, there are my bits and pieces of things for the weekend.

I am not sure if I mentioned here that my Mom's 2nd round of tests on her heart were much, much better! IN fact, so much better, that she does NOT face further testing or surgery for now! Just the same routine of medication and watching very closely her sodium intake. That made us extremely happy last Tuesday! We were all truly blessed and relieved to have the good news on that one.

Still waiting on the "thunderstorms", that so far have not been here. Ah, but it is TX! So, one moment the sun is shining and the next it is black as coal dust and ready to blow you away....

May you enjoy your Easter Day, Rhia



As I wrote this yesterday, I had forgotten to add that Eater Sunday was the day my Dad passed away in 2005. It seems impossible it has been 8 years! There are times it feels like forever and then other times it feels like it was just yesterday. Honestly, as much as I still miss him everyday, he is much better there than here. My Dad would not be able to handle all of the tremendous changes in our world today. He had a large enough issue with the changes about the last 15 years of his life. He was so used to a "small town", with a very small town attitude, that he found it hard to accept some things that the world brought in so quickly. Things like a cellphone, even a cordless phone, he just did not understand it. Heck for years he was "leasing" a phone from AT & T and they were charging Mom monthly for that until I had it fixed! He came from a time, during the Great Depression, that there were no televisions, only radio's, there were no cars when he was very small, a school was a one room building where all grades First through Senior were in the same room. He was Valedictorian of his graduating class. He was not really able to accept why I would go to college, and even though he could see why I needed to work, he felt a woman should really be at home, and the man be the main money maker, just as it was with him and Mom. A Computer??? Forget it! No way he would fathom that. He was more of a stickler for the "old ways". Even though some of that changed as he saw the world change, he really never was able to accept most of it. Anyway, if he were here now, and saw all of the horrid things that are happening daily in our nation and around the globe, even the "good" things like technology, it would just be something he could not accept. As things go, I guess we shall all be that way in one realm or other. So much changes so quickly. We have news and information, of the latest at our fingertips. When you think about what changes have happened over the past 50 years it is mind boggling.  Anyway, I felt I needed to add this since it was the Easter part of the day he passed away. 

The Merri-Go-Round of Insanity with Doctors & Pharmacists!

IT is all like insanity! Some of the things we go through people just don't believe! For instance, I had a prescription I have been taking for years. (My generic diazepam). Every month they have to as the doctor for an okay on the refill. Every month for 5 or more years he okays it, they fill it, and no problem. Week before last on Friday, I cld and put in for a refill. I went in on Sunday and it was not there yet. Well I had forgotten he was on vacation, thus probably the delay. So, Monday evening I go in, still nothing. Then the pharmacist (some new jerk that I can't understand) told me there was NEVER a call for it! Well, I knew that was bull because they had already filled my other script, the muscle relaxer, which he does the same thing approves it monthly at the SAME TIME AS THE DIAZEPAM! So, I call the doctor, They say they sent the script ON FRIDAY! But, they "resent" it. I went through that same thing 3 MORE TIMES! Then it dawned on me, they sent the damned thing to "WAL" MART not Wal Greens! So, I call and someone named "Kelly" at Wally World told me "YES" they had it and they were filling it. She asked me if I still wanted it filled, and I said YES! I was not going through another battle to get it, so I would pick it up the next day! I get there, and they proceed to tell me there is NO script for me!!!!!! One of the girls stepped up as I argued and told what my story was, and she said "well I think I recall m PCP's office calling and "cancelling" it out"!! Well that was a lie, because I was told it was already in the system, being filled, yet she says there is NOTHING IN THE SYSTEM! Well, if they called and it had already been in the computer, the script would show it was there and was cancelled by the doctor. So, I am pissed by now. I called the doctors office, in Wal Mart, and I ask for the nurse. I told her I even told them there at their office to MAKE SURE it was going to WAL GREENS! not Wal Mart. She swore they had sent it to Wal Greens 4 times! In the mean time, I finish shopping, go home and call Wal Greens. Not only did he have it he already filled it!!! AFter I had to have the nurse CALL it in verbally! All 3 of them were lying. No one had done their job right, and I knew it. And then people wonder why we go crazy!!!!!! Hell who wouldn't. When you are ill, in pain, trying to take care of a home, family, a Mom, and everything else, doctors visits etc... then you have to jump through those kinds of hoops for one script, heck it would make Jesus Nuts!!!!! So, when you have to do what you are doing, having to GO BACK due to their incompetence, it is just nine kinds of WRONG!!! Jim read an article about a woman who now charges her doctors for HER TIME if they run late on her appointments. IF she has to sit there more than 10 minutes for a "scheduled" appointment, she send them a bill for every moment of her time spent waiting for the doctor! She sent all of her doctors a formal letter telling them what she was going to do, explaining "her" time was just as important as theirs and they would charge her if she was late or did not show, thus she would do the same! She sent one of her doctors a bill, when she had to wait something like 2 hours (happens to me all the time) over her appointment time, and they PAID IT! That is what all of us need to do. We have to stand up for our rights. Another thing that irks me. I needed a very simple form with two of my "diagnosis" codes on it (I had everything else filled in but that) and my doctors signature. I needed it by 4/1, well before that because I had to either fax or mail it! I took the form in last Tuesday early am. I had a note on it, and told the girls my situation. They totally ignored me. I sent two emails to my doctors nurse, asking her to please check on it. No response. I cld. Thursday evening, and one of them was so rude on the phone. She said "well he fills those out late evenings, or at the end of the week" Well guess what, yesterday was the "end of the week" and they close at noon, and I have NO PAPER! (It is a form I need to send in about my disability). You know how the government is, even State, if they want something and you do not get it there by the deadline, they will cancel everything and make you start all over again! I realize I am not the ONLY patient, but heck, he does all kinds of other crap, he had time to tell his nurse to fill in those codes (hell I know them myself) and then he sign it, or they "rubber stamp" it half the time with his signature! But they DO NOT CARE! We are not as important. We are how they get paid, but it does not matter if they mess up our lives, and then we suffer for their lack of caring, and incompentancy. As I said it is nuts. I have so many stories where I have been screwed over. I guess you read the one I posted about that stupid Neurologist "firing" me! What an idiot!!! I would not take my puppy to him.
So often people do not understand just how frustrating things are with physicians. IF you do not go very often to a doctor, or for tests, or do not deal with a pharmacy very often, then you can't possibly get it, I understand that. But, the millions of us out here that DO deal with it, on sometimes a daily basis, it is definitely enough to drive a very sane person over the edge. It wastes OUR time, our money, and often it causes more hardship on us, by having to go back to the pharmacy, or make more phone calls, and then the doctors now get pissed if you "call more than once". All of them now have a message that says "if you call more than once it may delay your prescription etc.) WELL if they would GET THINGS TO US ON TIME!, we WOULD NOT CALL BACK! So, they have issues for sure. It is a constant merri-go-round of crap to deal with. Then they wonder why we have so much stress, anxiety, depression, and often just plain anger. Well as I said, even Christ would be angry over some of the mess I deal with. 

Whom Can "Fire" Who?? A Doctor "firing" a patient? Why can't we fire them???

Maybe some of you have had this happen, but in all my years of doctors this as a first! I got a letter in the mail this week from the neurologist that did my EMG/NCS about 4 weeks ago. ALL he was supposed to do was those tests, nothing else. Well, he did this whole gamut of crap, and then told me I needed to see a Vascular doctor, and have more blood work(I just had the same stuff), plus he wanted ANOTHER CT SCAN that I just HAD 4 MONTHS AGO and spent a fortune on that showed NOTHING! Well, I spoke to my own doctors about the whole thing, and they told me none of what he wanted was necessary, but if I did want to have my arteries checked out my cardiologist told me it was an okay idea but no huge hurry. Well the letter told me he as of me receiving that letter cancelled the "doctor/patient" relationship. I thought maybe he was in trouble or something so I called. Just because I DID NOT GO TO THE VASCULAR doctor immediately (when I had already told them I had my Mom's mitral heart situation to clear up first), plus HE WAS NOT MY DOCTOR, HE was to do JUST THE TESTS!, anyway He basically "fired" me as a patient!!!!! What an ass! In the first place I was not going back and did not even have an appt with him. in the 2nd place my pain dr. who requested the tests already has seen me and the tests and has told me what I needed to do. And in the 3rd place CAN WE FIRE OUR DOCTORS WHO TREAT US LIKE CRAP??? MAKE US GO THROUGH STUPID EXPENSIVE TESTS that we do NOT need??? What a jack ass!!! We had a huge laugh over it! So, any of you been "fired" for not doing EXACTLY what your doctor suggested??? I thought this was a "free" world....

One Baby Step At A Time "Life's Surprises"

Over the past several months, it seems each day I find there is something new in my life. Yet, those new things are often "not good things". New symptoms of illness have plagued me now since early January, and even though I have been to numerous physicians, through many tests, and it seems I either have no relief, no answers or develop another new almost unbearable symptom. I have tried to piece the puzzle of this mysterious illness together, trying to gather information from my own searching on line, to trying to put what tests have been done in order that they make sense, and I have honestly has more "luck" than the doctors have had. I have figured that even though the double vision began several months back, long before the severe leg pain, fatigue, abnormal blood "myoglobin", & all of the what seems like new side effects that have just suddenly hit over the past few months. OF course they could be related to anything. They also could be related to one another, even though they came on at different times. I finally got one issue straightened out yesterday with my pain specialist. After several phone calls that were getting me no where fast, I just made an appointment to go up and see him. Once we could get on the same page face to face (which I find now is almost impossible when leaving messages with nurses) he was in agreement, that at this moment the pump does NOT look responsible for the issues, and it seems to be either muscle and/or nerve in nature. Thus if it is a type of neuropathy and/or myositis, or muscle issue, then doing any kind of surgery on my body ti check the pump is a total waste of my time, his time, and a waste of putting me under anesthesia for no very good reason.
We still honestly do not have an answer. I could be looking at a viral thing that did start first (the double vision was the very first about 9 months ago), but it seemed like a flu bug. During that time as I have explained more than once I developed severe muscle pains, mostly in my legs, down the back and front, but in my feet, ankles, toes and even the bottoms of my feet. At the time I thought it was from the flu. All of us that have ever dealt with a case of flu knows you have horribly painful muscle aches for days, sometimes for a week or more. But, rather than begin to get better once some of the other symptoms got better, the pain in my legs, from my lower back and sides, down to the bottoms of my feet got worse. That was about 4 to 6 weeks before I finally went to my doctor, and finally called and talked with my pain specialist. It also happened that he had refilled my pain pump during this time. Thus we felt it could have something to do with the pump at the time. (I still wonder if some if it does not.  About 5 days after he emptied it completely and refilled it, suddenly the pain did improve), so I wonder if there was something somewhat wrong with the medication, but it took longer to get a grip on the pain since I was in such horrible shape, plus I was also on oral pain meds, which helped to change the pain enough to make it noticeability different. Either way something began to change. The pain was not all over my body as it had been, my legs still hurt badly, but not as badly as they had a week before that. All the while each and every type of specialist known to man was running their own tests on me, and not sharing the information with my other doctors, thus not one soul, with the exception of myself, was able to put two plus two together and get the correct answer... 4! I began to look at the test results, do enough "Googling" and see that in many ways all of the symptoms, all of the test results do interrelate to themselves in one way or the other. I for the life of my cannot fathom why doctors will run a million tests, never look at them, or share them with all of the others involved, at least the PCP! So, not one soul knows the entire story, especially those that half-assed listen to me, and none of them can possibly "guess" if they do not have all of the things in front of them. Hell, even the tests that get ran are half the time not looked at by the very physician that asks for them. A great example was yesterday. I knew what my EMG said. But, even though my doctor who is a great pain specialist, missed the entire boat, because he had never really looked at the very test results he asked for. So, I was told several times, he HAD looked at them, and nothing showed, thus it was not the issue. Yet, yesterday, when he LOOKED AT THEM while I was sitting there. I feel that is really the first time he saw any of what showed on the EMG and NCS. So, no wonder he was still telling the nurses to schedule a surgery! What if I had not been so astute? I would have already had surgery, and for what? Not for what needs to be done as far as it looks now. I have to wonder how many patients just take the "nurses" for their word, thinking they must be right, and have a surgery that is not necessary? I will bet there are many. They have insisted on me, for the 4th time in that many weeks to do surgery as "per my doctors orders" and were very insistent that it be done! Luckily, I DO understand, thus I kept NOT having the surgery, putting it off until we had all of the tests back, and then I did GO UP THERE to talk to my doctor himself! IT is true insanity. You cannot trust any of the nurses, I have found out lately, half the time they do NOT take messages correctly, or tell the doctors exactly what you said. They do NOT get information correctly from the doctors to tell patients, but I think they just make something up about half the time, because they are either incompetent or just don't care anymore. They do a piss pour job, get paid, and go home. NO longer it is on their shoulders to make sure patients are done right. I realize not ALL of the nurses are that way, and we have many awesome ones that deserve lots of praise, but they are getting less and less. More and more we are seeing the others, like yesterday. I called (I am NOT exagerativing 4 times) on one of my meds. I got the run a round from both ends, the doctors office and the pharmacy. On the 4th TIME when I called the doctors office, I TOLD THE NURSE to MAKE SURE the prescription was being sent to the CORRECT PHARMACY! They kept saying they were not getting it! FINALLY, after nothing again, I CALL THE WRONG PHARMACY! and where it is sitting??? At the very pharmacy I told the NURSE NOT TO SEND IT TO!!!! How many times I said that through 5 conversations I don't know but they had also gotten the original request for a refill from the correct pharmacy1 Yet they still could NOT GET IT RIGHT! I gave up, told the other pharmacy to fill it please and I would pick it up today. I had already had well more than enough of the back and forth game, and not one person was doing what they should. I was wasting my energy, my time, and getting more upset by the moment. It was not even worth it, but my doctor will get an ear full when I see him again.

From here I plan to finish my 2nd book and get it published hopefully by the end of May, or the first part of June. I pray my body will allow me to work on it. I am about half way or more through, but I have lots of the prose to go through. Those are what take the time to make sure they are correct, in grammar and spelling. So, I will be trying to get those in their, and decide what way I want them organized. The name of the book is "Time Tattered Musings"- Reflections Through The Looking Glass of Wisdom. I hope to "meet" my own personal deadline which is to be by the end of May. I hope to have it completed and ready to publish by the first week in June, if life permits.

Wish me luck, and I shall continue to keep you informed, and will blog here also. Their will always be something going on that I need to talk about in my entangled web of what I like to call "Life".... Hugs, Rhia

Lost My Reasons For What I love To do...

Morning All. Just a few days ago, I was "Up" I thought about my 2nd book to be published coming along. It has been slower than what I thought, just due to my own unexpected illness issues, and things with my Mom we did not expect either. Of course that is life. Things go on when you least expect them to, and especially when you have other roads to follow, it seems you find you are on a completely different path all together. From pavement, that seems smooth, all of a sudden to a dirt filled, rocky, full of ruts road that is taking you to a place you had no idea you would even be going. Ah, 'tis "Murphy's Law"... or may I paraphrase that now to say "Rhia's Law". IF it is going to happen, it shall happen to me, and usually not in a good way. No different is like yesterday. I felt like a train had ran over me, then backed over me, and ran over me again. Even though we had a wonderful time on Sunday for our day trip to the Casino, I always pay for it the next day with aches and pain, and being tired. Thus, even though I was worn out, I thought I would get something done around the house. So, I wanted to change the way the ceiling fans are to move, back to the correct way for Summer. Well, as soon as I got up close enough to move the button,  I saw just how dusty they were. So, of course I am not going to leave them that way. I get my dusting items, dusted them off, and when I completed cleaning the one in our living room, I turned it on. All seemed fine, so I went to the one of the office. Well, it is new or fairly new. We had to replace one I believe last Summer. In the process, we had a blade that has a bad thread where you put a screw in. Thus after the entire fan was completely up (again Murphy's Law) the very last blade was the one we discovered with the spot in the threads and we broke off the screw into the hole. So, that left only one screw in that blade, and of course how are you going to hold that on? Well, you can drill it out, but then you still have the question of how to get something in there to hold that blade on correctly? Anyway, we had ran it with one screw, but just on low for the Winter. Due to the direction the blades for for the Winter, as long as we kept it on low it did fine. But, after I cleaned it, I happened to have knocked that blade out of position, and of course it went nuts when I tried to turn it on. So, I quickly turned it off, and decided to let Jim tighten the other screw in that blade, and he had an idea of epoxying the other side on to hold. In the meantime, I glance over to our living room, and suddenly that fan just stops! I was like "what the hell"??? I thought possibly one of our breakers tripped or I did something while cleaning it. Well, I also turned that one off. I tried several times, and it seems like the motor is probably shot in it. When Jim got home, we both agreed the motor is probably going out, but if you turn it on, and help the blades go at first it will run for now. So, we can do that for the next few days until we get a fan and can put it up. Of course this week is already sort of booked with several things to do, thus time is never on our side when it comes to projects at the house. So the whole story I tell to show that here I am cleaning even though I am feeling lousy, and wouldn't you know I clean the fan and the damned thing goes out. I guess I would have been better to just leave the stupid thing dusty! So many times in my life, just when I feel I am doing something that is "good", I find I should have just "left it dusty" after all.
thus, it is that way about my writing and my book being published. I was so elated to get my 1st book published. I never in my life dreamed that wish would become a reality in my life, yet it did. So, at first thinking about a 2nd, and then a 3rd one was really something that seemed to keep me feeling like I was on the right road of life. Yet, every stone in the world has been thrown at me to knock my "horse" and it's rider (myself) into the dirt. Chronic Illness on TOP of LIFE is just not pleasant at all. Life is already difficult enough, and can at times be more complicated than we care for it to be. Then you add a condition, or conditions that are a daily part of your life, such as Lupus, MS, RA, FM. CFS, Diabetes and the number of other chronic conditions that are always either on the fore front or the back burner of your life, and your pot tends to boil and run over more than you care for it to. Plus, that boiling point tends to be at a lesser "degree" than if you did not have the chronic issues to deal with frequently. I thought about this Saturday afternoon and early Sunday morning as I readied myself for a day away at the Casino. When you have a type of illness that tends to "rule" your life, such as Lupus or RA, or many more, all of the things involved with that illness have to be taken into consideration even on a trip for the day! Medications have to be either taken with you, or watched when you take them. What you wear, especially shoes due to all of the walking can effect you, thus you may not be able to wear a certain outfit or shoes. Or you do wear them, and just suffer through the day. Then you may have a special diet you have to stick to, pain that shall pop up if you have chronic pain issues. You must be sure you have your health information on you, especially your medications, and if you have something that needs special care, such as I do, with my pain pump(I cannot have a MRI), you must have that all written down in your wallet or purse where it can be located for site. Other items would be insulin if you are diabetic, and/or sugar pills, candy etc. Maybe you have a walker, cane, or other item that helps you walk. Also, for some it may be you are not able to ride for but a small period of time, then you must get out and stretch your legs. Even though our trip is not that far away, and the ride is not all that long, stopping for breakfast about 30 miles before the Casino is a nice break out of the car for a little bit. Riding for any length of time with joint issues, back issues, and so forth will put you in a strain, and make you sore. So, even a quick few minutes out of the car to stretch helps if it is possible and needed. Then of course if you have any other considerations like animals at home, any thing that can be effected by being gone for the day, all of those things must be addressed before you leave. Hell, even just going for the day somewhere can wear you out just getting ready to go, much less the trip and getting there.
When it seems you begin to be much slower at things, whether it is getting dressed, cleaning the house, going to the market, or whatever it may be, you being to get frustrated with life in general. That includes even a trip you look forward to. It used to take me an hour to get ready, now it takes three! That does not include the day before I spend trying to decide what to wear and so forth. With Lupus and/or many of these other chronic illnesses you begin to be slower at many things. Like I said, rather than an hour to get ready, as it was just a few years ago, it takes three or more. Age already does that to you. The older we get for the most of us, the slower we are at certain things. Your balance is not as good. Your thought process is not as good. You tend to forget certain things, or must double check yourself to make sure you have what you need, and have done what you need to do before you leave the house. I also get much more frustrated now when anything happens to "change the plans". Whether it is a good change or just a delay of some kind, once I have "planned" things out a certain way, that is what is in my mind. So, if a sudden last minute something interferes with the plans, then I am just out of sorts for the next few minutes. It happened yesterday in fact. Mom and I were supposed to be going alone yesterday. We had asked my hubby to go several times, but he had said "No", he wanted to stay home this time and work on the new web site. I had even asked him late Saturday afternoon, and he said no he was staying home. So, in my head, I had it planned out when to leave, when to have Mom drive over here so Jim did not have to get out to take me to her house, etc. Plus there was NOT any bad weather in the forecast for the entire week and weekend. All week long I had watched the weather here and in OK carefully to see there were no changes of rain or thunderstorms here or in there area. Thus, my plans were for Mom to be here around 7:15 am. She could see to drive by then, and did not have to be concerned about driving in the dark. She does not do well driving when it is dark. So, I knew it would be light enough for her to make it here. Well, I got everything ready, showered, dried my hair, and went to put on makeup, and Jim mentioned getting in the shower. Well, this was about 5:30 am! I was like, what the heck is he showering so early for, when he has the entire day to take one or whatever. Then he comes out of the shower dressed like he is going somewhere. I stepped out on the front porch, and i was shocked. I proceeded to ask him what his plans were since he had planned to stay home, yet at 5:50 in the morning he was dressed up and ready to go! Well, he comes out with "if you don't mind, I thought I would go with you two after all today". Well, I know I had an odd look on my face, not meaning to say no at all, But, I was just bowled over that he so suddenly changed his mind and decided to go. That was a change in plans I did not expect. So, that meant having to change things around. We had to fix up some place for the dog for the day. So, we turned the kitchen into a play room for them, but that took putting extra food out, water, their blankets, and so on so they would be okay until we got home late that night. Then we had to get hold of Mom, tell her NOT to come over her, and that we would just come over to her house instead and leave from her home. I had to turn the phone over to ring the cell phone. We had to leave some lights on, lock everything up, make sure everything was turned off, and so forth. I know it does not seem like a lot, but it does add up to more time and trouble since we were both going to be away for the day. It is funny that way, that not many years ago, I was puzzled by my own parents being set in their ways so much. I am not that much older now, but between aging a few years, and then the matter of having chronic illness to deal with, every little thing that does something to put you "off schedule" or disrupt what you thought was going to be one way, seems to just upset your entire world. Once plans have been made, I guess I am so set in my ways in essence, that it throws everything out of sorts for me. I always hated being late, and now it seems I am late no matter how early I start to be ready. Whether it is cooking, cleaning, going somewhere, I always start earlier, yet it seems I still tend to run late. My Dad was such a stickler for being ON TIME! He was EARLY everywhere he went and everything he done. So, if you were one minute late he would be just totally tore up. I am sure that is where I got the thing about being "not tardy". He was that way until the day he passed away, he believed people did not have many excuses about being late. He understood emergencies, but just being "lazy" and not being on time was a huge "No-No' to him. It used to drive him nuts because my half brother was NEVER ON TIME for anything. IF he said he would be there at 4, look for them around 6. Plus do not expect a phone call telling you they are running late. They would just be there when they got there. Not Dad, if I was cooking Christmas dinner for all of us, I made sure if I told him to be there around noon, I was dressed by 11. He was going to be at least a half hour early or more. So, I can blame my times of duress on those things that suddenly change without notice on age and illness. Right now I am just in a place that I am not sure who I am, where I am, what I want to or don't want to do. I am very "scattered" to the four winds about life, about being ill, about all of the annoying chapters of life, that seem to rain down on me, just when I think things are looking better. I honestly feel quite useless. I even got out my things in my sewing machine cabinet and measured out pieces to make a quilt. I am so entirely disgusted with feeling like crap, feeling like I write nothing but crap, feeling like everything I do turns to crap, and I am just at the bottom of the mote of what living is all about, that I do not care anymore about what used to seem important. Even what I am "blogging" about at this moment, seems more like I am blathering on, rather than actually saying a damned word anyone cares to hear..... (so I think it is just time for me to stop right here and call it day on the blog) and bid you a much better day than mine seems to be.

A Very Good Article that Explains so much about CFS/ME & many other often "unknown chronic illnesses"

A friend of mine has this posted on her group this morning in FB. It so relates to what is going on even in the realms of Lupus and other autoimmune patients. I also wrote this just before I read the article, and it explains why I feel we have such a "downgraded" medical situation here in our nation. There are lots of things "broken" here, and the way patients in the realms of chronic illness is one that is definitely busted for sure. All too often when we "enter" the medical realms with a chronic and sometimes rare set of bizarre symptoms, it takes often YEARS to get a proper diagnosis. We can say that is for many reasons, from the screwed up way medical personnel are educated, from way too many doctors, too highly specialized, yet do NOT communicate with other doctors or their patients, so we get left in the middle. Then it is like "pulling teeth" to find out what the hell is wrong with you. I have also been given a different diagnosis, by several different doctors. One doctor sends me to another, and that doctor does his own set of tests, tells me something entirely different, then send that over to the first doctor, who then send me office to yet another specialist who reruns the SAME TESTS!, and gives me some other diagnosis. Well on the merry-go-round you are on then. You are sent from one doctor to another, none of which have the others information, thus everyone has their own opinion. How can a patient really BELIEVE what the hell they are told, when you are told so many different things Honestly my latest diagnosis for the double vision, the high abnormal myoglobin, the severe pain in my legs and back, has been diagnosed by the latest neurologist of suspected myasthenia gravis! Well talk about scary! Then I know the myoglobin situation could lead to acute kidney failure if it is there long enough, etc. But my doctor that told me that one is out of town for the week. I really need to talk to him because he left a message and told me to STOP a medication that I AM NOT ON! So, they call to set up another blood test in three weeks, yet it will not help to do that, if he thinks this other medication is causing the issue, yet I am NOT taking it. As I said, it is literally a night terror if you sit down and listen to what I have been through. I know people probably do NOT believe what all has happened and not happened with my illnesses. It is nuts, insanity, and the sad thing is rather than getting better, it is just getting worse! Here is the URL to the article, and a copy of my post from FB this am:
http://phoenixrising.me/archives/16291

(I had been answering a post from a dear friend who lives in Malta when I wrote this)

You know Suzi(by the way it is good to see you) I trust MY OWN diagnosis almost better than I trust the doctors at times. It may be greatly different in Malta. Here our doctors are too filled up, too busy, have way too many "irons in the fire" so to speak with paperwork due to the government telling them what they MUST do because of Medicare, they have a shortage of GOOD nurses, our hospitals staff are not well educated at times, and the things WRONG here go on... thus our doctors DO NOT have the time (say like I do_ to sit down and really PUT all of the pieces of a patients medical facts down, study them all together, and then be able to know what is going on to make a correct diagnosis. Another problem is we have TOO many specialists now. Every little thing has some kind of "specialist" now, and every one of them wants to do their own testing and run bills up higher and higher with us and the insurance companies. BUT, then rather than SHARE INFORMATION so all of your doctors know everything going on, THEY WON'T! I have spent hours and hours, on the phone, paid money for, went and picked up all kinds of medical tests and the results so I can take them, copy them, and be sure all of my doctors have them. Then you know what, most of them never look at them. Other than my family practitioner, and possibly my Rheumatologist, the rest of them could not tell you anything about my medical issues, other than something they "worked" on, did surgery on etc. Right now, I know for a fact my pain doctor has had my EMG/NERVE conduction study records for a week. In fact they called me on Monday and told me they are ON HIS DESK! I have YET to hear from him. Now I cannot MAKE HIM look at them. I did everything I could to get them there to him. I checked on them, had them re-faxed, called to make sure his office got the fax... and now I know they are on his desk. Does that mean maybe he is out of the office or something? Well not one soul had told me that. So, yes I trust him as my pain specialist but I feel somewhere in his office is a huge break down of communication. IF things were right, with him, staff etc.. he would have already seen those tests and called me. Now here it is Friday, and I need to call for a refill of the medication he had given me for this nerve pain, yet he has not even seen the tests results, plus he does surgery and is only in the office half a day on Fridays. There are lots of issues with our nation now from the entire Medicare thing that hurts doctors, hospitals, patients and the nation, along with a lack of GOOD doctors (doctors used to be doctors because they wanted to help people), now there are those out there that just are in it for the money (as per the neuro-opthamologist I saw, that just is an ass), and as I said I feel this business about them not often times sharing information, thus us, as patients must try and get the paperwork to them, THEN get them to see it!, plus we lack medical STAFF THAT CARE! I have seen more NOT trained staff, or they do not CARE, or something is wrong, from the hospitals to especially the doctors offices. They do not care about doing their job correctly, OR they just do not care at all. Maybe because they do not get paid enough, lack the proper training, or something, but even my primary care doctor cannot keep staff! Every time you go in, just about the time someone their gets to know you as a patient, they are suddenly gone! I bet he has been through 50 different staff people in a year. I am not sure if that is because of his huge patient load, long hours, pay amount, maybe someone in the office is impossible to work with(they have an office manager that is just a jerk), but something is wrong when a busy office, that has plenty of work to do, cannot keep good staff there. So, we have all kinds of issues, that also relate to reasons WHY we as PATIENTS get left out, overlooked, mistreated, misinformed, and then that can lead to misdiagnosed. You are right you must BELIEVE in your physicians and trust them that they are diagnosing you correctly or you can never trust that you have been treated for what you need to be treated for correctly.

What Is Truly Normal? & How Do I Cope When It All Seems To Much?

Two stupendous subjects as I said at the end of my last post. I face these "dilemma's" frequently. When I say frequently, I mean daily for the most part. We, as being victims of chronic illnesses and/or chronic pain (which by the way usually run hand in hand) always question each day as being normal or not? We tend to think about our lives "before" this mysterious "blackness" washed over us, and up until then, we always thought of our lives as normal. We went to work, we had our family, we cooked, cleaned, went out to parties, dancing, dinners, school functions, and did all of the things that most "normal" people do. Back then I never questioned if things were "hard" to deal with. I just accepted that my life was pretty good, and I guess or may I say "I KNOW" I took those years for granted. We tend to assume nothing will ever change the normality of our lives. Other than kids growing up, going to college, and us growing older, we rarely sit around trying to decipher what might "normal" be if we were chronically ill? Not a question the majority of the population asks itself; UNTIL you are CHRONICALLY ILL. Then that seems to be just one piece of the "new normal" of the rest of your days ahead. Acute illnesses, such as the flu, a broken leg, having a surgery, and so forth, come and go. We may be very ill at that moment, and it might even last several weeks, let's say if you are recovering from a major surgery. But, you know that you WILL FEEL BETTER! It is temporary. Better is coming up.
BUT, when you have a chronic illness, such as an autoimmune disease, things such as Lupus, RA, MS, Diabetes 1 and 2, FM, CFS (it seems we have come to "letter" now for all of our diseases), you know you will NEVER HAVE A NORMAL DAY AGAIN! No matter how "normal" you want it to be, and you do have days that have a tinge of the "normality" in them you once had, but your entire life is turned right side out and upside down, with no way of ever truly finding what is "true North" again. You KNOW you life forevermore has changed. You are either going to battle with some particular illness that has many symptoms, or take lots of medications that can cause lots of issues, or pain that on some days can be relentless. No matter how you try and slice the pie on a chronic illness, that thought of it being "temporary" flies out the door, and you realize that forever more your normal no longer exists. I have attempted to try and create a new kind of normal day. Yet, there is nothing normal about my days for the most part. If I am not fatigued horribly, where I must push myself to do my errands, do things around the house and exercise it is unusual. Don't get me wrong, not every day of my life is dreadful. When I am out of a flare, which sometimes goes for even months, the fatigue and tiredness, the headaches, the joint pain, and the rest of my symptoms are "minor" compared to a flare. I can get myself going fairly easily, but now it takes me much longer to get ready than it used to. Just a few years back, I could be up, showered, dressed, makeup and hair done, no more time than an hour if I was going somewhere special, less if I was just going to town shopping. Now that has turned into more like 2 hours. Plus that does not often include putting on makeup, or really dressing up somewhere to go to like the Casino. That takes at least three hours, if not more. I usually have everything laid out, jewelry and all for the next morning, if we are going very early like usual. I have learned to get as much ready the night before. Even then it takes me at least 2 1/2 hours to get everything on and fixed! I have slowed to a snail's pace when it comes to all kind of things. Buying a large bill of groceries takes me twice as long as it used to. Of course now I coupon a great deal more then back then, but still an hour or less trip now once again is more like 2 to 3 hours. Whatever it was from cooking, to shopping, to cleaning the house, it takes me twice as long. I used to believe it was because I was lazy, or had gotten incompetent, but no, it is just that I do not get around as quickly. My body and my brain work more slowly than they used to. It takes me much longer and it is much more difficult to make decisions. I used to be able to not give something much thought, and I just did it. I did not have to contemplate over some minor ordeal, but just do whatever it was or was not and go about my way. But, even what to eat for dinner, or what to watch at night on television turns into a major item to decide upon. Chronic Illness for me is like the song "Running On Empty"... you feel you are always running on empty and also running behind. Every day of my life feels as if I am playing "catch-up" with myself or whatever I am supposed to be doing. I feel like I have had 5 years of my life on hold, and now I am trying to get back to where I was, before I fell so far behind my own life. There are days my mind may be running a million miles an hour, enough to make more people dizzy, yet it is like riding a stationary bike, or running in place, all of that brain moving gets me no where. I have just about learned, or more like found it easier to just say "I don't care", what I eat, what I watch, where we go, or when we do... just whatever suits the other person... and so forth. It is much too taxing on my body and mind to make so many decisions, thus it is much easier to let someone else lead and I follow. Yet, that gets frustrating because I find that I really DID want to choose at times, thus I am upset with myself that I did not make the effort to do so. So, normality is just not there. Not if you are thinking about your life before chronic illness. It will NEVER be back to that normal. That is sometimes very difficult to deal with and accept. Honestly, for many of us, I think we never truly accept that our forms of normal days and normal lives have past us by. We had a short ride on that carousel, the fall led us down the hill, that landslide we were not expecting, and now we have had to climb back up that steep hill, with the rocks and gravel stinging into our knees as we make our way back up, sliding back a few inches and then making a few inches further up that steep and lengthy mountain. Coping, handling, mentally trying to not give up is yet another issue we deal with frequently.
I go through days, weeks, even possibly months, that I "deal" with the illnesses. I cope with all of the medications, I do not get all that stressed over pain, and in a general context, I seem very able to cope mentally with the issues that lie in front of me. Yet, deep within our souls, all too often, we feel as if we cannot take another day of illness, pain, medications, of not feeling like ourselves. We put on a good show. Sometimes in that 4th act, scene 10 though, we are breaking down, within and then without. I find myself crying in my car, and wondering why. I find myself beating the steer wheel, parked at Wal-greens wondering why I do this anymore. We look for the "good" reasons we "stay" here, rather than drive right out to our nearest bridge and jump off. At times that feels like a much better plan, than closing our eyes, and having to open them the next morning. When you know it will just be more of the same, or what is worse, is that it could be much worse, and not the same, so you have to within find some kind of synergy and opt for taking the high road rather than succumbing to the low road, which would be that selfish way out. Yet, we feel that getting out of this life, would make it easier on our friends and family. The "burden" we give them would be lifted. I often want to play the blame game, and I do it well. I think back to my late 20's and early 30's. I think back t some of the things I did back then, like getting my first tattoo, or going out to the bars with my friends, even single. I want to think maybe there was something I did back in those years that I am being punished for. Did I not take good enough care of my kids, family, home, job? Did I not do "something" right, thus here I am at 50 being "mutilated" in physical and mental ways due to some horrid thing I did back then? Often you hear people say that we shall pay for our mistakes later in life. So, when something like these illnesses, extremely chronic and more often than not incurable, we tend to feel we have been wrong or wronged someone else in our past, thus now the "judgement" is upon us for all of ways we were foolish back then. When I look in the mirror, and I do not see the person I was just a few years ago. I see the way the illnesses have pulled me down, to be a slower, older, and it seems weaker version of whom I used to be, how can I not feel as if something I did, or did NOT do has caused this horrible scene in my life. One that is not something to turn away from. You cannot run from Lupus, you can only run "for" it. You cannot "cure" RA at this time, but you can hopefully "put it into remission" with the right medications, or slow down its progression of damage.Yet, trying to convince your inner self to think you in some way are not totally responsible for this horrendous grief of pain, fatigue, never ending changes in medications, in your own body, your mind, hell... your spirit. It effects every single thing in your life, whether it is relationships, with yourself or someone else, or simply the way you leave the house now. Used to I would get take a shower, get dressed, do my hair. and hit the door. Now days, depending how long I will be out, I have to make sure I have my "PTM" which is the device for my pain pump with me, medications, for my stomach, for pain, sun screen, or may I say sun block, even in the CAR! The sun will blister my cheeks now just coming through the windshield. I have to make sure I have worn the "right" shoes depending on how long I may have to walk. My "emergency" bracelet so people would know about my health issues if something were to happen to me. I also have to carry cards in my bill fold that tell about my pain pump and my metal knees and right shoulder. All of the above keep me from having an MRI of any kind. The list seems to never stop. Then, if I am going away overnight, Lord forbid. Then it is another realm of "stuff" that must go with me. Mainly all of my medications, but there are other things I carry now, that I may not have carried if I were not chronically ill. In fact, to date, since I was diagnosed with Lupus, RA, and so forth, other than overnight, I have not been gone from the house on any type of vacation. We go for the day or for one night to the Casino in OK, and we have not even done that lately due to my own battle with illness and then my Mom's also having some issues. Weather held us up at Christmas. Then New Years was not much better. By the time my birthday rolled around in mid-February, I will ill with the "flu" like stuff that has brought on an entirely new set of doctors and tests. Honestly, I think my PCP maybe onto what is going on with the fatigue, the pain, etc. than the rest that have ran endless tests. He did a special blood test that found something that happens with my muscles which can deteriorate them. As that happens it creates a substance in the blood that cannot pass through the kidneys correctly. It kinds of "clogs" them up, which can cause acute kidney failure if not handled correctly. He, of all doctors, LISTENS, to me, he knows my case very well, and he knows exactly what to look for. Some of my doctors are fairly well educated about all of my complicated things, but he tends to be able to "look" for what is out of the normal when it comes to me, and what maybe wrong with me. Usually, he is right. So, each and every thing in your life seems totally different. We are all used to change. "Change" per se' is not necessarily a bad thing. But, when you talking about the kind of change as in an illness, especially something "chronic" that you know shall be with you the rest of your life, it is not an easy thing to accept, nor deal with even as the years pass by. It is almost as if you are always in the process of grieving. You grieve your lost life. You grieve for the lost person that you no longer see in the mirror. You are in a constant state of guilt, anger, sadness, resentment, jealousy, sometimes almost rage, & sometimes you find acceptance. But, it seems that portion, the acceptance, comes in tiny pieces that come and go more often than you care to talk about. Oh, I can put on a good show for those around me. I can act as if things are okay. I can put on a smile, half way, act like things are not that bad, and play the part when I need to. Yet, anyone that knows me very well, can see through that mask of the challenge of trying to "look" well, and act as if I am not ill. There is nothing easy about this crap, not one thing. I could make it "easier". I could admit and give in to the illness. I could throw up my minds, decide to allow the pain, the fatigue, the brain fog, the slowness, all of the daily symptoms that plague me to take over. I could lie on the sofa more. I could go out less, keep house less, cook even less (since it seems Jim certainly cooks more than I do), and the list goes on. I could do just the very bare minimum to keep the house straight, and he would certainly help to do the rest, even more than he does now, but, there is no way I could do him that way. Plus, I cannot do my own self that way. I can say the on occasion, not all the time, but there are times, when I am just having a really bad few days with this mess, that my Mom's stuff seems to almost be too much. Not very often at all, but if I am already having my own health issues, and let's say we have several issues at home I am having to deal with, then I have to also deal with all of her things at once, I can sometimes feel I am totally on overload and I am overloaded. I hate to even admit that because a huge portion of why I am even back in TX is to help her. But, before making the decision to come back, I was not dealing with all of these health issues. I had a few, but they were not as it is now at all. Thus, when we made the decision to move back and help her, little did I know I at times would barely be able to take care of myself, much less deal with the rest of the drama that has unfolded as I have lived here now for 7 or over years.
Thus all of the above, that you must deal with daily, yet you truly never know what that "daily" might be like when you open your eyes, on some days makes you wish you could step off the planet, and float off to wherever the place of no pain, no sorrow, no illness, no drama is. Now that does not mean I am totally suicidal, or thinking about harming myself. Yet, you do want to at times, leave all of this crap behind. We tend to dwell in that place of knowing the someday all of this WILL be over, and more than likely though it will NOT be here by any medication or physician. There is no magical cures here. Someday, I pray they will figure these autoimmune illnesses, along with many others out. When they do the will be able to "fix" those genetic issues, or cell issues, well before a symptom arises. Or for those with these illnesses, the medications will cure it all, or they will be able to "immunize" you to keep you from having these illnesses.
I don't see it happening in my life. or not even in my kids lives, possibly my great grandchildren may have a grasp of those things. For now, I just pray that my kids, and their kids remain without signs or symptoms of any of this mess.
So, yes we are never "Normal".... an Yes, I Cope, but it is not an easy thing, and there are days that coping is just not there, thus you give into it. Those are they days I am on the sofa with my two puppies, watching Lifetime Movies all day, and praying that this will go the hell away....