Flares... Flares... Flares... Do We Realize When The First Begin for Us?

I just read an article posted by a friend on the issues of an RA Flare. In general, when the word "flare" is mentioned, I think more on the lines of Lupus and a Lupus Flare. In fact, up until recently, I was kind of wondering why they call an "attack" of FM a "flare". I was thinking that FM, and CFS more came on and were "there" with you all the time. I was not really thinking of them as an illness that "waxes and wanes" as a flare does.
I have definitely got a grasp on a Lupus Flare. I am not sure if I have thought back after one gets so bad that I must go in for medication, how it first "began", how long it took to get bad enough to see my doctor and get medications, then how long it takes with meds to get over it and feel like yourself again.
The article talked about those first stages, of just feeling "off". You can't put your finger on it, but you just do not feel like yourself. You feel like you really don't want to exercise, all of a sudden, it seems like a monumental task. You feel twinges of pain off and on, then it becomes more of an ache in the joints and in the muscles also, In fact your body "aches" all over. I often with a Lupus flare, have what I call a "Lupus Migraine". NO amount of regular pain medication will get rid of it. The only thing that will is a strong dose of Solu-Medrol, and then the step down days of Prednisone. I have found that out over the years of suffering with these. It is totally different than my old regular Migraines were and are. Actually for some odd reason, I don't have my regular migraines as much anymore, not like I do the ones from a Lupus Flare. Yet, it does make sense because I have enough regular pain medication with the pain pump, that I think it takes care of the chronic migraine type of headaches. That is how I almost know for 100 percent sure, it is coming from the Lupus. Because pain meds won't touch it. But, if it were a regular migraine, then the prednisone probably would not do much to top it. So, they are definitely much different in nature. I then just develop more of a feeling of not any well being. I lose my energy to the point I just can't and don't feel like doing anything, not baking, not being on the computer, my stomach gets upset badly, I hurt all over, I can't sleep, I am "cranky", and get upset easily over every little thing. Anything as I said from taking a shower to making the bed is a monumental task. I just cannot muster up enough energy to "feel" like doing anything. I don't want to go out in public. I prefer not seeing anyone, or even talking to anyone... all of it a part of these illnesses and what they do to your body, your mind and your spirit. They just knock you on your ass, and you must be prepared to stay there, no matter what the time frame might be. You may feel this way only a few days, and then again you may feel this way for days, weeks, hell even months... nothing really "helps"... you must just try and deal with all of it, one moment at a time... one foot in front of the other, taking one task at a time, and finishing it before your bit of energy for that day is gone. I have been dealing with either a horrible flare, or flares... plus side effects from new medications and upping one of my medications... and believe me, I don't think I'll ever get better. Every morning I wake up thinking okay today I will feel better... only to be disappointed that all of those crappy feelings are still here. I wrote this below that goes with this on FB this morning, so I will post it for you also...

Below is my FB post that goes with the above information.....

The article was good. Actually kind of gave me a perspective of what I go through but i just don't think about it. Especially during the "initial start" of a flare. I think for me, and Anthony I think you are the same, and many of us, we have "dual" or more illnesses. I have RA, and Lupus, and Sjogren's, Raynaud's .... and so forth. Now I have developed the other symptoms that go along with MS. I have not even went to try and really get it diagnosed, because honestly I am not sure for one it will do any good. For the 2nd, I am really not sure who to go to. I realize that Neurologist's usually deal with MS, even though it is an AI illness. And Dr. Q. already kind of was in "agreement" with me, that it did sound like it was a good possibility that I have MS on top of everything else. In fact, when he told me he was not actually as "up" on MS, and a Neurologist, maybe better, I was kind of shocked. I felt like since it is an AI illness he would have some answers for me. Yet, he is really more leaning to be an expert in RA. In fact we rarely even discuss the Lupus, etc. My regular MD has always taken care of the Lupus flares, etc... and I go see the Rheumy for the RA. Of course many of the treatments are the same for all of them, thus I am on what I need for Lupus and RA. But, recently I wonder if I don't need more for the MS if I do actually have it, I am having massive issues, with weakness in my arms and legs. They feel like they weigh a hundred pounds each. Even when I first get up, I have a hard time sitting here trying to type. Also, with that, I have seemingly more "brain fog".. almost a bit different from the Lupus side of it. And this business about constantly dropping things, tripping, almost falling, is nuts. I have been doing that now for about 4 months or so. When I think back about "symptoms"... I had thought well I don't have any "bladder" issues. But, YES, I DID... I already had Bladder repair surgery... that we felt like I did not need, after I went through it. That specialist should have tried medication BEFORE putting me through the horrible surgery! That was the worst I have ever had I think. The recovery from bladder surgery is awful and it takes weeks and weeks, or more like months and months. Then, even after I had "gotten well", it really felt like it was all for nothing. I still had some of the same problems I had before the surgery! It took over a year for me to finally "see" a bit of difference. Then that surgery left me with some other side effects that suck. I always said if someone asked me about bladder repair surgery, I would say HELL NO! NOT until you have 2 different opinions and have tried everything else... there are several medications first, and I would have several opinions and do lots of research if I had to do it again. I was not thinking when I had it done. I just "took that doctors word" and went along, rather than really questioning it, and making sure it was the right thing for me first. What really was bad, AFTER THE SURGERY, and I was still having issues, THEN he wanted to try MEDICATION!!! What the hell??? I just was so mad at myself, for not doing the usual, and "listening" to my own body and mind. I decided after that unless I really have more than one opinion and I have researched and asked plenty of questions, and found out all I need to, I won't have anything like that done again... Anyway this article does kind of allow you to look "down" on yourself before the "flare" really gets bad and see what happens in the beginning...  I will give you the URL where this article is. They have some good information there about different realms of RA, and other AI illnesses, along with FM...

http://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/90.html

Maybe this will also help you to gain perspective on how a flare begins for you...

 

Fixing The World??!!

I can't believe it is Friday! This has been another one of those mess up weeks for me. Between going for the infusion, and feeling like I lost a day there, then everything else going on, plus feeling like hell physically, I just do not know where the time goes any longer. It seems each day passes by faster than the last. I know I get to where I wished I would not even listen to the news anymore. I rarely read much of it in the mornings now. It is so terribly upsetting to see all of the hateful, greedy, wrathful, rumors of war, people harming their own people, Mother Nature's destruction one after the other, and our leaders have NO CLUE how to handle what they need to do in order to put this country back together again!, that it just makes me sick to my stomach to see or hear about it. You have to ask yourself "WHY"? Of course many of us already know that answer... it is because of the greed, lying, stealing, vengeful, hateful, and that list continues of those who could care less about the fellow human, and are all for themselves. Whether one person or a huge corporation, GREED has taken this world OVER. From the Middle East, to the USA GREED is ruling us! If you don't believe it, read, really READ or listen to the news. I can guarantee your conclusion will be much like mine... people (not all we still have some good ones left) but as a whole... as a society in all do not give a damned about their neighbor. Hell they do not care about their own relatives! Until we get out of this "me", all for "me" kind of mentality, nothing is going to change. All we shall see is the destruction of everything that has been built up over the past couple of hundred years. Technology cannot save us, the moon and stars cannot save us, having big homes, luxury cars, and lots of money in the bank shall not save us, fighting war against others will not fix us... ONLY WE, as human beings can FIX what is wrong. Until the "mental" part of humanization changes, NOTHING will get resolved. Yes, I guess that is my wrath for today... that is not what I came to say, but it is what came forth as I typed. so I shall allow it to remain.... Have a good weekend... Rhia


After reading a post from a friend that posted on FB, this is my new post for Saturday morning in regard to hers...

Thank you so much Carole! I appreciate your candid take on what the heck is going on with the nation and the world. It is frightening when you fear even taking a look at the headlines of the paper, or opening the internet front page of your favorite online place to read the news. Gosh, speaking of, Wow, what a blow to the East Coast again!!! To believe that the iconic Seaside Park there in NJ took another hit, this time with fire. I was just staring in disbelief when we started to watch the news yesterday evening. Those people have been through so much! On the other hand you look at Colorado, Boulder and so many towns around it, and their they are, have 70 plus people missing with flood waters that appear to look like raging rivers, where only a trickle was flowing just a couple of days ago. I have just been really concerned for one word to use, over "Mother Nature" and her "wrath".... from the wildfires that are burning up what seems to be half the West, and portions of the Rockies and Mountain Time states, to the severe droughts like this one in  TX, that has almost the entire state in an emergent place. We are literally burning up everything around. In my small town, where trees that are over 100 years old stand, they are almost bare of leaves. I look at my beautiful crepe myrtles, that are usually in a wondrous bloom of hot pink, and they barely bloomed this year. In fact they were so barren of leaves, we got to see more birds nests and baby birds than ever this Summer. But the sad part is, because the trees have such thinning of their leaves, that it is so easy to spot the nests. That is frightening. We have already lost a HUGE pecan tree on our back "40" as we call our big lot behind our house. It was probably 50 years old or older, and half of it was dead at the beginning of Spring. Now the entire tree looks like a dry huge mass of sticks. It has just lost every green piece that was on it. Then our Hackberry trees that everyone plant's here because they can withstand these conditions and they grow so quickly, all of a sudden look "diseased". They already are not the prettiest trees because they have a "knot" that forms on their leaves, that makes them look funny, but now, every one even in our neighbor's yards appear like they are so sick they also might just die. I thought they were covered in web worms, but when I looked closer, I think it is just disease from the drought. I fear spraying them due to the terrible condition they are in for fear they may not withstand any type of poison on them like that. It just breaks my heart to drive through town, and see how many iconic trees we have lost, or are going to lose if we do not get rain quickly. That does not include all of the flowers, shrubs, bushes, that everyone has been taking care of and had them looking so good. Things are are the most hardy for TX, that should withstand anything are withering away in the dry, rainless heat. That in itself is scary enough. Then the state of everything else around the globe from more hurricanes, tornado's, huge ice storms, more and more places with either drought conditions of more flooding, or fires. It seems every where you turn there is some type of disaster happening. I just even despise getting started on the state of our nation and the world. I never remember being this concerned about just what state our country is in morally, mentally, emotionally, financially... it is not just the fact that we are a nation that used to be the leader, and now we are "broke"... but the moral and mental dilemma that so many are in. More and More people are turning into depressed individuals that are desperate for jobs, for money to take care of their families, for educating our kids, for getting out of the wars and staying at peace for a change... none of us want war... I feel everyone would greatly settle for peace for a change. Yet, our government continues to put us in a place of war everywhere we turn. I do realize the hatred we have seen abroad, with the killing of many, many innocent lives should NOT be tolerated. Yet, we can't even get our own nation in order, why and how do we expect to get another country "fixed" when we ourselves are broke, still at war elsewhere, and have enough violence we need to end here first. I do agree that whomever is using chemical weapons on anyone needs to be stopped and punished in some way, and we should never allow them to "get by" with such horrendous actions. Yet, we are allowing some of almost the same kinds of behavior here. MORE guns??? Hell we need to "disarm" America first! I can't believe in towns where mass murders with guns have happened that they want "more guns"... schools do not need more guns.... more is NOT the answer... taking up the weapons that only belong in a war zone, the battlefield, or possibly some in the police hands and getting them out of the hands of citizens is the first thing that shall help to stop these insidious crimes against humans. Allowing hundreds of bullets of almost totally automatic weapons like used in war being on our streets is certainly never a good spot to be in. If we had NONE of those as some countries have done, ban all of them. We would not have the issue of them falling into the wrong hands of killers, and those that mentally are insane. Why we cannot find a way to agree on that one is beside me...

Chronic Fatigue Syndrome, Fibromyalgia and more information from research...

http://simmaronresearch.com/2013/09/foremost-virus-hunter-finds-biomarkers-few-viruses-chronic-fatigue-syndrome/


I thought it was odd, I had always read that the Epstein Barr virus was one of the huge markers of this illness. Yes, you are correct though. They are just now touching the very tip of the iceberg as to the cause of these illnesses. I still think that FM and CFS, run hand in hand with autoimmune illnesses such as Lupus, RA, and so forth. They have so many similar things as one another, and it just seems they are too close not to all be inter related to "the autoimmune system" and its response to what happens when it is compromised in one way or the other. When we have "too much" of our immune system fighting our bodies, that is not a good thing. Then our own bodies are fighting against themselves, which is was Lupus, RA, and so forth are doing. Then you take other AI illnesses such as diabetes 1 and many others and either the AI system is not making enough of something, or not making it at all, or the body for some reason is unable to process what it needs to so the body can respond properly. I feel in the near future we are going to make headway in the fact that many of our illnesses have to do with the AI system, and the way our bodies react to what is happening. Even cancer has some unique properties much like many of the AI diseases. Either it grows out of itself and becomes over powering of the body, or the body shuts down and does not make a certain thing we need thus the AI system again is involved. It is like the response of "inflammation". They are seeing an inflammatory response out of so many illnesses. That response is one of the keys to diagnosing just about every illness out there that is chronic in nature. Inflammation has a huge involvement in CFS, FM, ME, Lupus, RA, osteoarthritis, look at allergic responses, you have a sudden inflammatory process that causes all of the problems from an allergic reaction. Research is getting better, and showing more progress in all of these chronic illnesses, yet we still need so much more. If we are ever going to finally get the "final" blow in and stop them from harming us, we have to have those researchers, the people that go in and volunteer, the companies making the medications to make clinical trials with, our scientists and doctors out there using their own genius minds to begin to uncover all that happens when these illnesses take over, and I feel headstrong that we will finally have the answers, and maybe not a cure soon, but at least a way to stop these before they become so horribly chronic and do so much damage. The main issue is DIAGNOSING THEM EARLY!! This bull about it taking YEARS AND YEARS to finally know what is wrong is just BULL!!! We have to get someone to find a way to absolutely know what you have, and find out very quickly so treatment can begin early in life. NOT after these have just taken over your life. Then the medical system takes a stab in the dark, throws tests and medications at you, and sees if something "sticks"... well that is NOT going to get us well! We need more specific tests, and ways to get through and know for sure very, very quickly, such as we do with many cancers, so we can treat immediately... I so wished I was a bit younger, and had stayed away from marriage for awhile and went on to be a nurse, and possibly onto being a research doctor. If I had only known of course what I do today, I would definitely be someone in this field of medicine, getting into the heart of these chronic illnesses and how to diagnose, treat, and hopefully cure them... some day maybe my own great grand kids maybe involved... we never know...

In Honor, and Giving Those Lost All of the Glory... 9/11

As I pause for a brief moment, after another day of "junk" in life, I think about the men, women and children we lost on 9/11/11. Honestly, I feel there are no words that can truly describe that horrendous act upon our people, and it has effected each and every one of us, and for the rest of our lives, we shall think back to that fateful day. I find myself often looking over my shoulder, or turning my head to look around my surroundings when it is in a huge venue. However it "hit" you, I am sure you are very much the same. Of course the "danger" of that day has never ending. Those lives were taken for no good reason, on a "regular" day for the nation, people going to work, kids to school, and doing all of the things we expect to do on a sunny normal day in September. Yet, today, those thousands are not here to look at the leaves turning. They are not here to see the Fall colors that shall be here soon, or the excitement of football season and watching the games to cheer their teams on. They are not here to go to music or dance lessons, or practice their cheers for cheer leading. They will never again study for a chemistry test, or fill out applications for college. Each and every one of those special lives shall not get to allow "freedom to ring" in their own hearts again. We put a beautiful place there to remember them by, and it is incredible. We can put flowers out by there names, and give our honor, and those lost the glory, as the fire fighters and police men, charged in knowing they may never return, along with the every day men and women that stayed to help, rather than run from the dirty breath sucking rolls of all kinds of stuff in the air... So, WE united as ONE NATION, need to take a very GOOD LOOK back at that fateful day. We need to stop our BICKERING (meaning our government) and start taking CARE OF EACH OTHER AS A WHOLE!!! It should have been a very big lesson, one that cost more than money could ever buy... that it is time to get our stuff together, and unite our nation, and then ONLY can we unite the world!!!!

My "Mind" Runneth Over.. While My "Body" Runneth on Empty

Second Infusion of Rituxan behind me now. Seems like a day that took forever and a day. I have my post that I wrote for FB, and am posting it below. Before I do that though, I want to say some things here. First of all, I appreciate those who come here and view my blog. I realize I don't have a great deal of traffic. I wished I did. For this blog, is going to and is already a HUGE piece of my writing for my 3rd book. It is a very intimate look at my life now, with all of its down, outs, and highs... and will be some of the "glue" that shall hold my "old" life in with my "new" life as I tell my story through as I called it earlier, the "muck and mire" of illness, abuse, living, loving, hurting, crying, screaming, climbing, falling and crawling my way back up on the mountain top over and over again. I used to pour my heart out in poetry. Daily, sometimes several poems a day... but it seemed at least one a day for years... I wrote "short essays" novelettes, thoughts, however you want to name them, but I never had began to try and put everything into a "book". I knew I would someday. I have had it inside of me for many, many years. But, up until reaching the "middle" part of my own life, and being able to look back at the things I have been through, where I have gained, wisdom, power, weakness, and humility, am I able to really "tell" my own story. I want to be able to take my own self... within and without... and give it to the reader. My hopes are that those who read it, will be able to identify, understand, and find a renewal of their own hope and faith through it. I hope to touch others hearts, yet never "feel sorry' for me. I never have wanted anyone to feel sorry for me. I am thrilled with the prayers and concerns, and the love all give, but sorrow, I have enough of myself, and the "negative" is what I am trying to lose... so the positive will shine through. What I "have" to do, is put my mind, heart and soul... right here in front of this computer daily, and just WRITE! Forget all of the crap of daily living,
Of course I still have to make the bed, dress, feed the dogs, and so forth, BUT rather than get too caught up in other time consuming things, my thoughts need to be here. On the "blank page", thinking only about the sounds of my nails on these keys, and the thoughts of what I want to say through my heart, to my readers. Then and only then, shall I be able to really pour out, what I want to say to you.... below is my FB post from this morning... it talks more about yesterday... more to come ....


Facebook post below from earlier this am....

Well, (NO I am not well), but I guess that is the way we often start a sentence... ;) I am home. It seemed like it took FOREVER yesterday for the infusion. We had to be at the University Hospital by 8:30 am, and of course even though we left extra early both I45 and I 35 were in a snail's crawl and I thought we were going to be late. In fact I even called the infusion clinic to let them know we were on our way.. We did arrive only a few moments late thank goodness, and got our car "valet parked" (they do it for everyone that does not want to have to park about 10 blocks away, then ride their van service back and forth). But all of the doctors will validate your parking so it costs you $5.00 to park, and a tip for the guys if you care to leave one. So, for us it is worth the 5 bucks not to have to carry handfuls of stuff with us and go back and forth on the van. Anyway, they got me checked in quickly, but I could tell they must have been having an "off" day. Even the girls at the check in area did not seem like themselves, as they did two weeks ago. I sat about 5 minutes or a little longer, and they called me back. Well, I noticed even before I got in my room, the entire "staff" seemed "off". They were in a hurry, there were not explaining things as usual, never asked us if we wanted to order lunch, and so forth. In fact the nurse came in, said she would be "taking care" of me and she was the supervisor for that day also, so she may be pulled out of my room if there was something one of the other nurses needed... anyway, I could just tell, they were not being "friendly", they seemed just generally "out of it" when it came to really taking care of my needs. Nothing like my first trip. My first trip was incredible. The nurses were extremely attentive, and this bunch barely spoke the entire time I was there. It was just not as pleasant as my first experience at all. In fact the nurse handed me my two pre-meds, but nothing to drink with them. The last time they even asked me what I wanted to drink them with, and offered coffee, water, juice and so forth.... so I had to ask my husband to please go down and get me some water, and some coffee (of which clumsy me again, spilled part of it in the floor and all over my dress that I had on and I love that dress. I hope it is not stained)... it keeps happening more and more frequently. This constant dropping, spilling, tripping to the point I almost fell at least twice yesterday if not more. I can't hold onto anything. I get to where it seems I either spill something, or make a mess some how, or just am so clumsy about so many things... between my brain seeming not to work correctly at times, and this constant dropping, spilling and tripping, I am really concerned about the MS, truly being a new issue. I am just not sure how I want to handle or even who to go see. I have already seen several neurologists, and also my Rheumatologist thought it was possibly I have MS... but he of cours is not the "nerve" expert, thus trying to decide whether to see the neurologist here I went to before, or someone else... I am just not sure... I feel I may need some type of medication for this... yet then I am already on so many meds... some very similar in nature to the Lupus and RA meds... I fear anything else may just make things worse... just an entire battery of crap to consider... I am not sure which way to turn. I USED to trust my PCP but now I am not sure about him... rather than try and help me, I am sure the first thing he will do it try to pawn me off to another doctor again... he always does that, then that doctor NEVER takes my insurance... so I have to find a doctor on my own anyway... just a vicious cycle of crap to go through... So, I got all of the pre-meds done, and my doctor as far as I know did not change anything. If he did the nurse acted like she did not know... the only thing he probably did was up the Solu-Medrol, but honestly she was not in the mood to look, so I just said I would deal with the "side effects" this time with the doctor and call immediately if I have them again this time... From there it was hook up to the main thing, the Rituxan and start that 5 hour process. This time it seemed it took FOREVER!! I think they dripped it more slowly the first part of the drip than before... then as they saw my blood pressure not dropping any lower, they increased it quite a bit... but it was after 2 pm before we were out and getting the car... and it felt like I had been there for days,, rather than hours. I was just totally exhausted. My stomach has just been giving me heck for 2 weeks now, and yesterday was no different. So, we ate on the way going yesterday but even at lunch time I did not want anything really. I ate some graham crackers, while Jim ate lunch, and I noticed when I started to the car, I was extremely dizzy and weak... partial meds I figure and partial just sitting there so many hours... Anyway, thank goodness we got out of there before rush hour, so traffic was not bad coming home... but I was so totally exhausted. Even though I did not do a thing but sit there, I just felt so drained...Of course though we got home to my flowers outside drooping (it was so early and dark I did not get to water them yesterday before we left) and even though it was supposedly "Cooler" they were not happy. So, we got in, got the poor dogs settled down. I hate having to put them in the kitchen and lock them in. But they have gotten so bad with being left alone and both have anxiety issues, that they sometimes pee in the floor. So, we have just gotten to the point we have to lock them up in the kitchen if we are both gone. Neither of them ever used to do that at all. Then about a year ago we began to have issues with them about every once in a while peeing in the floor... we know they both have separation anxiety... and cry when we leave for a little while... even with the radio on, their favorite blankets with them, food, water, extra paper and so forth... they just hate it when either of us are gone, but worse when neither of us are home. We both got them settled, got things put away, changed clothes, and so forth and so on... then I got a glass of tea and was headed for the sofa and or course it dawned on me that I had to water my flowers! So, I tried to stay out of the sun, while I got them watered down enough until morning, and finally got in to sit and watch a movie. By then it was time for dinner, and neither of us were hungry. So, I wound up having some frozen yogurt, and cool whip with the puppies, and Jim was still full from a late lunch. He had a meeting at 8 pm. I was on the sofa still tired, and did not even get up to write last night. I gave myself a reprieve and did not fuss at myself too much. It was just an exhausting day... and I was just out of it, mentally, emotionally, and physically. Of course I wake up this morning, with an upset stomach, and still dizzy and feeling almost drunk. I took my stomach meds, and some of my medications for the vertigo... and here I am... my mind racing a million miles an hour... what I need to go, not do, go, fix, clean, buy, not buy.... do for Mom, for us, need to do my huge monthly market trip... re-pot many of my plants before I bring them in for the Winter... and I mean many. Gosh several of them are so huge, it may take an 18 inch or larger pot for them to fit in. They have all went nuts this Summer. And I used the "Osmacoat" fertilizer my daughter suggested and everything has went nuts, and blooming like crazy!!! I also FINALLY HAVE HUMMYS!!! this past about 10 days they finally came in and they are just something else... we have been having a blast watching them... LOL, they sometimes will fly right up to us and look at us like, what the hell are you looking at"... but I love watching them. 2 at least are "babies" and must have been born earlier in the Spring. The others are at least 3 or 4 "couples". This year we have seen more than the others, which I am so happy about. As you can tell by my post, my mind is moving quickly, but I do not think my body is going to follow very well. I am thinking after this morning until later this evening, I may have this burst of energy, then the time will hit for the other shitty symptoms. I hoped I would not have those as badly, but I just feel it in my bones, that I will have to deal with those also. Just getting a quick talk with one of the nurses yesterday, and she re-affirmed the "strength" of this medication and what it does to your body, makes total sense as to why my side effects are as they are and what even my mind goes through. This is a chemo-therapy drug they use for a couple of kinds of Leukemia. I believe I said that before in another post. So, I can definitely expect some of these effects since this is so much more of a stronger medication than even some of the other biologics out there on the market for RA. I will try my best to wade through them as they come, and try to remember they are just "temporary" and will leave after a few days. And I pray that after those subside, it is known that people may feel better after only 2 weeks from the 2nd infusion!!! That would be heaven as far as the RA goes for me... :) Okay enough blabbing... will post more on other things... I am still so totally "off" I am not able to really "write"... I just pray that also changes... or at least I am not writing the things I want to write about... and am just having to put up with "garbage" writing as I call it, until my brain cells kick in again... I hope... I truly still want to get my book out about my own journey through the muck and mire of illness, abuse, and looking for the light to the way back... and if God willing, I shall find that in me to put on paper.... Hugs, Rhia

2nd Infusion of Rituxan Today...

Morning All,

I'll be out today for a good while as I am taking my 2nd round of Rituxan by infusion today. I don't mind the infusion itself. Everything went well two weeks ago. I just dread the side effects that began about two days after the infusion. I did let my doctor know so I hope there is something in the "pre-med" like upping the Solu-Medrol or something he can prescribe beforehand that will help to lower those side effects. They really suck. If I could get over the "hump" of those that last about 3 days, it would be okay. Of course I have not noticed a difference yet as far as lesser pain. In fact this morning, the humidity is horrible here. I knew it before my feet the hit floor. My wrists, thumbs, heels and feet are just "hella" hurting and aching, which hits when we have a weather change coming (I think we are having a Cool Front come through in a few days) or rain, and high humidity will do it also.
Anyway, I will keep everyone posted as to what type of effects I have or not... and if I see a difference in the pain and other symptoms or not. I really had a good feeling about this medication, so I hope my hopes are right on, and it will be of lots of help with the pain, and also to help curb the damage. I already have enough joints that need replacement that I am putting off... it would be awesome to not have to have any more.... Rhia

Invisible Illness and Chronic Pain Awareness... more information... and the dilemma caused by some

I just get fighting mad when I read these kind of articles, as well as know the horrid things we, as chronic true pain patients go through to be able to have a better quality of life. Dammit, yes I must take pain medication that is very strong. Yet, without it, I honestly believe I would die. Why?? Because there would be absolutely no way I could withstand the horrid intractable burning, stabbing, unrelenting type of pain I go through without something to help it not be so bad. Yes, and I did say "not be so bad"... NO amount of any kind of pain medication is going to take away "all of the pain". I "live" with a learned amount. All of us do. I don't care if you take aspirin, Motrin, Aleve, or one of the various narcotic pain medications, it only stops so much of the pain, the rest is what you have to learn to deal with daily. I have SO MANY various chronic illnesses there is NO WAY I can be totally without pain daily. From RA, Lupus, Degenerative Joint and Disc Disease, Migraines, Osteoporosis, Osteo-arthritis, MS, and all of the multiple joints I have either had to have replaced already, or the ones that are getting to that place, like my thumbs, elbows and hips... that are going to be there soon, even "fixing" those still does not rid you of it all. BUT, YOU CAN HAVE A LIFE, and you can WITHSTAND IT, IF you can HAVE RELIEF FROM YOUR PAIN MEDICATIONS!! They along with my other types of medications, those that I am able to take (I have had 2 heart attacks, and other physical issues that do not allow me to take some medications), I am able for the most part to try and live a half way "normal" life. Notice I said "half way" normal. There are days, weeks, .... I live with the pain being bad again. Not that anyone really knows why. Even with every test available to the medical profession at times can tell you or your doctor exactly why something hurts as badly as it does. But, when you have "bone on bone" with things like RA, Osteo-arthritis, DDD, DJD, you are going to be in pain. When "parts" of your body wear out, when blood cells are not right, when your bones are not as they should be, when nerves begin to not be coated with myelin, and again the list is endless you HURT! Hell, if it were at all possible, I would throw ALL of my medications, pain and all in the trash and never look back. For the majority of us we hate having to take the meds we do. They cause their own set of issues, due to side effects we endure. But, we must make a choice, to have surgery and get out of some of the pain, to take medications that may cause side effects, but the control from pain outweighs those side effects, or even though you feel it is a total waste of money, you have expensive, needless tests just so you can give your doctors something they have to go on about your medical conditions. It is AN EXTREMELY SAD DAY when DOCTORS who have spent YEARS IN MEDICAL SCHOOL and take an OATH to HELP PEOPLE, are TOLD BY EVERYONE ELSE WHAT THEY CAN AND CANNOT DO, PRESCRIBE AND SO FORTH. There are TOO many FINGERS IN THE PIE, when that can take place. I cannot fathom a "pharmacist" telling a doctor what he can give a patient. Now, if the patient did not mention an "allergy" to something, then those issues are different. But, just to "make a decision" based on their own judgemental, sizing up of someone by the way the look etc.. is purely wrong!!! That is no different than "profiling", which most of us hate when it happens. But, for someone such as a pharmacist, or someone in a business office at a doctors, etc. to jump to some decision about a patient due to the way they look, act or etc... at the office is ridiculous for the most part. Hell many people are "nervous" at a doctors office. It is usually no place you really want to be, thus that is enough to make you nervous. If you have to sit and wait for an hour or more in a little room by yourself, half naked, yes you are nervous... some people hate having book taken and it upsets them... so this business about the staff "sizing up" patients by the way they act in a waiting room is bull. Now, if someone comes in and is aggressive, rude, apparently "high" and so forth that is different. But, just because they seen "nervous" means nothing. I read a great article a couple of days ago about people that are chronically ill, women for the most part, will not "dress up", put makeup on, etc... if they are going somewhere that they feel they need to "show" that they are sick... what crap is that??? but, you know what? I catch my own self doing it. Again, that "but you do not look ill" stuff. Just because we may "hide" the dark circles, or put on our decent clothing, or say and and half way make conversation with someone does not mean we feel on top of the world!! I try my best and "hide" the pain when I am in public. Yet, I catch myself in fear of "looking" nice also. I sometimes will not go to the store, or a doctors office, or the bank "with makeup" on and dressed nicely in fear someone will think "well she does not appear all that sick"... why should I feel that kind of crap! It's totally unfair, but we do it. I know I am not the only one... I get to where I don't know what to say to those who genuinely know me here in town locally, "how are you feeling"? I hate saying like hell... all the time... it sounds crappy for me to "complain", yet I also fear saying "Hey okay today"... thinking now they think I am not really ill at all. There are times when I may be going for the day and taking my Mom a couple of hours away to the Casino for a Mom/Daughter outing for the day. Something for us to "bond" together doing, that gets us away from everything... bills, stress, worry, illness and so forth. Yet, I almost fear telling anyone "good" like this, and have them thinking, "well she is not that sick, she can go to the Casino"... Hey I can't count on both hands how many mornings at the last moment we have had to cancel the trip because I am not well. It happens all the time, with many things. For instance, I have been in pain and have been dealing with several bad side effects or what think are side effects from the new infusion and two others meds, one new, the other the dosage was upped... so I had not been out of the house for over a week. Due to that I had not been able to even run to the store... or clean the house like I wanted... or bathe the dogs... etc... I feel too bad to even cook, or bake... and even the thing I love being outside early in the morning to water my flowers and watch the "hummy's", I barely had the energy to do. So, I never know when I must cancel something we planned. I wanted to go to one of the churches today and still am hoping to. But my stomach is upset, the humidity is giving my thumbs, hands and feet a fit with pain, and I am not sure until later in the morning whether I will get to go to church or not. I won't go if I feel this badly then. I cannot enjoy it at all, and I fear getting sick there at the church, etc. So, there are times you cancel last moment plans, and disappoint those you love the most due to these illnesses and sometimes the pain of all of them. The guilt is there so much of the time. You often feel responsible for being sick. I am always "apologizing" to my husband or my family because I am ill... which is stupid... it is NOT something I have wished for at all... But, you do feel it is "your" fault, when something happens and because you are ill no one goes to something just because of you... So, having your correct medications, whether they are for diabetes, anxiety, high blood pressure, your heart, or for CHRONIC pain!!!, they are a necessary part of your life. They "help" you life whatever part of normalcy is available for those of us suffering... when we suffer, our loved ones and family suffer with us... I am beyond pissed about the entire thing... and it has hit my family of which I never thought it would... and I never thought my "great" MD, would be one of those who somehow, for some reason, still unknown by me or others I guess, why he has suddenly done some of the things he has done and why he is NOT doing things he was doing,.. I feel that an explanation at the very least is necessary... to all of us...
http://americannewsreport.com/nationalpainreport/living-pain-lies-damned-lies-medical-research-8821457.html


This National Pain Report.com is full of great information ... Their main URL is:

http://americannewsreport.com/nationalpainreport/

More on Chronic Pain Awareness Month...

There are many things you can do to bring more awareness as to how this illness brings life down to "Zero" at times when the pain is bad. It harms not just the person with it, but their entire lives. family, friends, activities... relationships... everything suffers... jobs, schooling... whatever you are doing in your life is effected by this horrid disease.  The issues remains even many doctors have no clue how to address these types of issues. There are many underlying causes of chronic pain, and chronic illnesses... all of which can be complicated, and can be piled one on the other. If you have Lupus, then more than likely, you can have RA, Raynaud's, Mixed Connective Tissue Disease, Chronic Fatigue Syndrome, FM, and the list goes on.. all of which have their own set of side effects and symptoms from rotting your teeth, to severe unyielding pain at times. You can be severely fatigued for weeks, days, or months. You can gain weight or lose weight. You can have such brain fog you are unable to even think, much less do a job right... all in the name of Chronic illness and pain... so we MUST get the word out... more and more of everyone need to know and UNDERSTAND the workings of these... without that research, hope, and a cure will never exist... so take a moment to tell someone, put signs in your car windows, I did. I printed these we have online and taped them in my back car window last night, along with on my front door at home... make flyers if you can put them out... hand out a card you make, take a flyer to doctors offices for them to hand out... do something, sign a petition, make a petition, write your own letters, or emails... make a call... do something... there is lots you can do, right at your own desk, that can make a difference... share the pics on FB with your friends.... but just do something!

When you run out of Words... When What you "say" does not makes sense... When Life seems So "Blown to the Four Corners of the Earth"

I am not sure why I am even trying to "write" today. I have not admitted it to myself yet, and most assuredly not admitted it to anyone else, but I feel I have "nothing" to put down in words that anyone, even myself cares to read, much less understand. I have lost all ability to truly share of my feelings. I fear sharing all of them, because I would never want anyone to deal with the frightful pain this place inside comes from. It is a wound that continues to grow... like a hole in a sweater, you pick on, and it becomes larger, and rips more every time you touch it. My thoughts are so jumbled, my spelling so "off", from the tips of my toes, to the very "synapses" in my brain, nothing is working properly. I can't even look past the emotions that bind me, and try to see anywhere I will recover. All I can do, is barely keep my own self "watered". Much less try to water my outside plants in the early morning light. The very things I used to love, all seem futile. Anything I have ever enjoyed doing, seems hopeless and useless. Where do you go, what do you do, how do you get over... feelings of absolute despair? I thought I knew... and maybe I do for others, but not myself.

My son made a comment to me on the phone yesterday that really hit me hard. He said he wished sometimes I would just say to him, "Things are going to be okay"... they will work out... and I always thought I did say that... to him and his sister, but I guess I was wrong... and for that I am even more saddened. I thought I had "supported" them, and given them legs to stand on, and a foundation to build upon. Yet, now I find out, that I may have not given them half of what they needed from me at all. I thought I have told them "it will be okay"... throughout their lives, when things just go awry. But, after the long conversation I had with him yesterday, I came to realize that sometimes I treat them too much like "adults" in many ways... rather than treating them like they are my kids, even though they are grown. I have always felt like I did not want to "tell them what to do" when it came to them being grown, and having lives. I never wanted to be one of these Meddling Mom's" that was always right up in their business. I had a parent like that, and boy did I ever run the opposite way... with my own. I won't even give them my advice, even when I feel maybe I should. I fear they will not appreciate my view on things, thus rather than "run them off", I have kept quiet and only offer what they ask of me. Now I see I probably have stood off too far, and been more distant than I have wanted to.
I can't go back and change what is the past... but I can change what happens in the future... and I hope they know I always feel like I told them, that things will be "okay"... I just say it in a different way than I guess I should... so I shall try and make that different for them... they both have lots of stuff in their lives that also cause ups and downs... one raising three kids... and the other recently out of a very long term relationship, now with a new job, in a new part of the state... and that is a very, very, difficult place to be. I know... I was there... with a new place, not knowing anyone, new job, out of a home, and a relationship, that even though sucked, I was not alone... and that loneliness sucks... it takes time to meet others, to get used to a new part of the country, to get used to a new job, to find somewhere you can call home... I did it, and I know they can also... and it will one way and one day soon, be just fine... and it will be totally okay... but when you are first there in it, and out of the old... it is just not a pleasant place to be. I can say it was one of the best conversations we had in a very long time... and for that I am blessed...
I am still reeling from my own crap... I am very concerned about the physical issues that face me, and feel all of the doctors have just "missed the boat", on part of what my health issues are... but we know our bodies better than anyone else... and I think they possibly due to it being so difficult to diagnose, have missed out on the fact that many of my symptoms lead to MS. Even my Rheumatologist was in agreement with me two weeks ago. Fortunately, the Rituxan is not being used on a trial basis for MS, thus as he said, possibly we may "kill" two birds with one stone...
My son made another very good point, when it comes to be "lack luster" thought about my writing... it is time for me to "re-invent" myself... my writing... I need to find a new way to express my thoughts, a new reason to write... some other way to bring out what I want to say... and he is right... I think I am bored with my "old ways"... I am sick of my illness, yet I want to help others... I am sick of speaking the same old thing, day after day, and it seems no one gives a damned... yet I write for me... and he is right there... I always began writing for my own self... and then later it became a place that I wanted to share with others... I had written thousands of things well before I shared many with anyone...

So, for all out there... I want to try and give this month over to "National Chronic Illness" Month and Invisible Awareness Week... I am not sure how much I will feel like doing on either, but I began yesterday, by "sharing" the information on FB, and here on my blog...

I will try and get more involved... for 3 years past, I did get a proclamation signed by our Governor of TX. But, somehow I missed doing that this year. I have done it for Lupus also. Of course this year they have a place to post those on their websites for these occasions... and of course this is the first year I did not get one done. I guess with all of the things happening health wise I missed it. I am looking to see if I can still get one signed by our Governor... it is a way of getting our information out there in the public eye for sure....

I hope you also find some small way, or some huge way to also give a moment of yourself to these two special issues... for they are both so critical... and for all of us with illnesses ... we totally "get" both... why do people say "you look good"??? when they do not know... and just the chronic daily grind of being chronically ill...

I hope you also find your niche... your place... your own way... into the light... and out of the dark... I am still feeling around in the dusk... not seeing light just yet... and I pray the words finally come again... my greatest fear is I will lose... my voice... forever... and that frankly scares the hell out of me... for where do I go... what do I do... without it???

September 9th through 15th also National Invisible Illness Awareness Month

Another subject we are all too familiar with and that is "invisible illness". It happens to be National Invisible Illness Awareness Week next week, and falls into National Pain Awareness Month. Here is a good website out there, and I am sure one of many about how YOU CAN make a DIFFERENCE! We sit around thinking we are just "one" person, so how can we make a difference? Yet with one voice, becomes, another, and then 10, and 50, and before you know it, we can have thousands out there telling the stories that need to be heard!!! Please post your own story, your own special sites you like, someone else's story you know about... all of it does matter....

http://invisibleillnessweek.com/