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/

National Pain Awareness Month and What you Can do...

All of the links below are about September being National Pain Awareness Month! It is a very special time we can all cry out in ONE VOICE, and be heard through out the nation and the world! I hope you join in, even in your own small way, or huge way to help us get the word out there. We are not some "idiots", or "junkies" looking for medications. We are not "lunatics", "depressed", "hypochondriac's" wanting attention, we are not "doctor seekers" just needing a doctors attention, we are not trying to ruin anyone's lives, or make yours worse... we are true chronic pain patients, no different from diabetics, those with high blood pressure, or any other type of "chronic" life long, life altering illness. The ONLY issue with us is that there is NOT ENOUGH KNOWLEDGE OUT THERE! There are not enough researchers, because pain is a huge challenge. A challenge for those in it, and a challenge for those trying to help cure it. It is far worse than many cancers, because with pain, chronic pain, you never "see" an end in sight. You know each day there is no "cure" right now, and you must wake up and face the day again, and again, and learn to "cope" the best way possible. We are your everyday faces, your bankers, nurses, lawyers, hard ware store workers, those that wait on you in the restaurants, or in your local retail store.... PAIN does not discriminate other than it seems to strike more WOMEN than men for reasons we still only guess at. So, it is OUR month to once again SPEAK, TELL, SHOW & try to find RESOLVE WITH THIS life altering, life stealing illness!


http://www.apmhealth.com/blog/bid/278353/September-Pain-Awareness-Month-Recap

http://www.healthcentral.com/chronic-pain/c/5949/119382/september/


http://uspainfoundation.org/september-pain-awareness-month.html

http://www.inthefaceofpain.com/take-action/pain-awareness-month/?gclid=CJKMgcmKr7kCFSgS7AodBmUAiQ

http://www.theacpa.org/news/National-Pain-Awareness-Month

http://www.national-awareness-days.com/pain-awareness-month.html

Last Entry - I FINALLY realized not one soul cares what I write - and I am a FOOL!

It FINALLY after half my life is over, that I am done, over and a damned old fool. I have spent all my life writing crap that not one soul cares about reading. Why I have spent and wasted time on it, I don't know. I guess we all think we should have something "good" we do. Well, I should stick to crocheting or something at least I have to show for it..

I know no body reads this so it does not matter, but I am also closing down both of my books... I will no longer embarrass myself or my family with them being up... so you no longer have to "watch" me be a stupid idiot... and my posts will not be anymore... if I feel some body else has something to say, I will post their stuff, and give them the credit they deserve... and to my dear friend who does have talent and much that people want to hear... I am so proud of you... you are a beautiful talented woman, with a huge career in front of her... I pray the illness bids itself goodbye so you can pursue even more that touch so many..... Rhia

Getting My First Infusion Of Rituxan, Bits, Pieces and Life with Lupus and RA...

Okay, we start here on Monday... :)


Well it is Monday, once again! I HOPE, I PRAY, that this week is NOT like last week! I don't think I can take another one as like week was. You name it, it went wrong, did or did not happen, it was just one of those "Murphy's Laws" entire weeks. What makes it even worse, it continued into the weekend! My medication that comes by mail, that my doctors nurse did NOT get called in, when she was supposed to did NOT arrive Saturday, as we hoped. Thus I ran out as of Saturday night. So, that has not been a pretty sight in the least. What makes it worse, it that she had plenty of time, and for some reason I cannot fathom, she was contrary enough that she waited until Thursday AFTER THE PHARMACY CLOSED to call it in! Well, they are in DALLAS and have to MAIL IT TO ME! I usually do not have any problems, but so happen the woman that does the medication for some reason was not doing it. So, this other idiot, and I could tell she was not going to do anything right, waited too long, thus even though sometimes the pharmacy mails it on one day and due to it being so close (Dallas that is), I get it the next day. But of course they mailed it on Friday, and I did NOT get it Saturday. Now, due to her bull, we BOTH need to be gone at the same time this morning, and someone HAS TO BE here to SIGN FOR THE MEDS! I have a dentist appointment, and Jim does deliver food for the elderly at that time on Mondays. So, if we miss him, I am screwed again. They keep those priority boxes if you are not home until that evening on their trucks until they go back to the office. So, that means I would not be able to pick it up until TOMORROW! So, NOW that is THREE days almost without meds, and guess what??? TOMORROW I NEED TO BE IN DALLAS ALL DAY WITH THE INFUSION!!!! So, due to her "lack of doing her job" she has caused a huge mess for my family, and it was totally unnecessary. It could all have been avoided has she called that script in when she should have. I know she did it on purpose, I could just tell the way she talked to me Wednesday on the phone she had some kind of "bur" up her butt and was being a jack ass, and why I did NOT know. I never have this problem with the other woman. I call my meds in at the same damned time every month, so it was not early... they tell me to give them 5 days due to it having to be mailed... thus if I was to run out this past Sunday, then even Tuesday would not be too early. Then they could have done this Wed. as she should have, no harm, no foul! It is just another one of those many instances, that this did NOT have to happen. But, someone decides NOT to do what is right, thus what they do not know is that they put a "kink" in several other people's lives. If something happened and that package is "lost" or went to a wrong address and so forth, that means more hold up, because the pharmacy will have to research that, find out where it went, and in the meantime send mine again! Hopefully if it is lost the pharmacy usually takes it upon themselves to bring the medication to me. Still it is ridiculous for her not to do what she was supposed to for whatever silly reason she has... Alas, I HOPE my week is NOT like the last. That was just ONE of the million issues that were not pleasant last week.

Post below from (Tuesday) early am Yesterday....

Do I laugh, or do I continue to wonder if "Murphy's Law" is still on my side for the week? Well, I changed my dental appoint from 11 am to 3 pm yesterday. Jim delivers food on Mondays to some elderly people, and he has to be gone at 11:00 (which I had forgotten when I made the appt weeks ago). But, he could have dropped me off, then picked me up. So, that wouldn't have been an issue. BUT, due to the fact that MY MEDICATION did NOT come in Saturday (and by the way, I got the tracking number, and it was send "1" Day Priority Mail and supposedly "free" Saturday Delivery) so why it did not come Saturday I am not sure. I do know my tracking it, for some reason, it did not go to the main postal service area in Dallas until 10:00PM FRIDAY night! Why I am not sure. The pharmacy called me on Friday early afternoon, around lunch time and said they were sending it out right then. They have pickup several times daily for meds that go out Priority Mail. Anyway, so I get the tracking number, find that out, and still it did not show it would be "out for delivery" yesterday, and if so, I KNEW, and would bet my "bottom" dollar if BOTH of us were GONE at the same time, the MAILMAN WOULD COME EARLY!! He NEVER comes until at least 1:00pm, but if we would have been gone even 15 minutes, then I can guarantee I would have been screwed again. So, I changed my appointment luckily they had another opening at 3pm yesterday. Which sucked also, because my entire mouth was still dead at dinner time, and I did not get to eat really anything. Besides the point, the MAIL did not come even BEFORE 3!!!! LOL! I knew then it was "out for delivery" but of course now the mail is "late" compared to the usual. So, I go onto the dentist, and Jim calls me about a minute before I was called in and said well, your script IS HERE and then we were expecting something from his client that came in also... so good news on both of those... of course in my head I thought "well they probably have the wrong medicine in the box and it belongs to someone else)... LOL!!! Anyway, I get home, all is well, and my meds are FINALLY HERE. NOW this started LAST TUESDAY! And if "she" would have just got the script in Thursday during the DAY, while the pharmacy was OPEN, all of this could have been completely avoided! By the way, I DID CALL the doctors office, and tell the office manager (who I know very well), what went on. As I told her, I DO NOT LIKE to gripe! I prefer not to have to say anything, but I felt it was very important NOT just FOR ME, BUT for OTHERS as well! Anything can happen, scripts get accidentally not called in, or mailed wrong, or the pharmacy be out of meds for one day, etc... so cutting it "too close" is just as bad as filling it "too early"... as far as patients are concerned. I did NOT want it early... I just wanted it ON time! That was my gripe. Then I did explain a little (even though I told them it was beside the point) the her actions, or LACK of actions, caused us more issues for this week. Me having to scramble for one of us to be here to sign for the package, maybe not getting it then, and not being able to pick it up today, because I have to be in Dallas at 8:30 am for the first Rituxan infusion... and that is an all day ordeal I am sure... at Least 6 hours, and I am sure more like 8 being my 1st time, and by the time things are set up, etc... and so forth. So we expect to be in rush hour traffic going and coming home probably... It was just something that did not need to happen, and causes "grief" that was stupid... anyway, so I knew my Mom's GLASSES were also coming in. Well, I called her fairly late in the afternoon and they had not come yet. My mailman sometimes is the same one as hers so I thought I bet he is running late for her also. She calls me fairly late yesterday evening, to tell me her glasses arrived! I asked her how she likes them, and she says, well, fine EXCEPT I CANNOT SEE OUT OF THEM AT ALL!!! I of course said "what"???? She told me she sees out of her old ones much better... dammit, here we go again!!! So, as I explained, there is a 100% money back no questions asked guarantee for the first 10 days, and after that they give 50% for the next 30 days... but we do not know if it is on "their" end or ours... I DO KNOW that I did put the script in correctly! I have already checked that out. But, when I was putting it in, it just seemed "not complete" to me. I kind of wondered at the time, if it was correct. But she has had cataract surgery, so I know that "helps" vision a great deal. Yet Mom had been almost "legally blind" with a terrible astigmatism since she was born I guess. I have one but not as bad as hers. So, when JIm and I looked at the script this morning, we still feel by looking at it, sometime is not right. I think the doctor either messed up, put something in the computer wrong, gave her someone else's script etc. So, I will have to find out Wednesday. But, it is so disappointing for us. Hers were not "right" at the "final inspection" a week ago and the had already "remade" them at 39dollarglasses anyway. So that already delayed her getting them a week or more. Now after ours are so great, hers are not right at all. Talk about what will happen, DOES happen! So, once again, I am in the middle of yet another problem, that more than likely is someone else's mistake. Maybe it was an "accident", but it sounds more like someone did not do their "job" correctly to me. We shall see. I am taking her old glasses, and the new ones down to be checked to see if they are anything alike. Her eyes had not changed that much, thus they should be pretty close to the same script. That is my story, and I wished I did not have to stick to it...

 I posted this one also yesterday on Tuesday before I left for the infusion...

I posted about the infusion taking place today, in the post below. Since that one is all about everything else also, I thought I would post it separately. Please keep me in your thoughts and prayers today. I have never had this kind of treatment, thus I am a bit nervous. Plus with everything else as of late, my nerves are already worn extremely thin, so I am just a basket of a nut case I think It is for the Rheumatoid Arthritis... and it is taking place of the Humira injections I had been on for about a year now. After my Orthopedic surgeon took Xrays, and saw my hips, thumbs, elbows etc. continuing to show degeneration, and my Rheumatologist also feeling we need to try something else, this is what we came up with. It was his suggestion. He suggested this along with a couple of other things, but this one made the most sense. I ONLY take it TWICE now in two weeks, then I get to wait 4 to more than likely 6 MONTHS, then I take two more again, two weeks apart!!! So, this is really a great deal of relief of not having to deal with this weekly, especially if the Rituxan works. I am a bit nervous of a few of the "side effects" but I will be in the very best medical facility in Dallas, with my doctor just a couple of floors away, and three hospitals right there, so I feel assured I will be fine. I gather they give me some medications before the Rituxan itself, so I don't have problems with some of the side effects, which is great! I probably won't get back feeling like getting on the computer tonight. I imagine even though I will be just reading or something, I still will be worn out.. so you will hear from me probably in the morning. I can get online there, so if I do, I'll try and jump on FB and say hello!!! Thanks each of you for your friendship and caring.

(Post from FB to some of the ladies in one of the groups and some of my friends... but also out to each of you that I may not even know are also keeping your good thoughts going for me.... )    This was this morning... below...

I am so totally touched by all of you! Sometimes we just don't know how many's lives we touch, and come in contact with online, and how important of a "bond" we build with each other. Thank you everyone! I feel it was all of you, that got me through yesterday. The power of prayer, along with the bonds we share can definitely reach up to heaven, and give us victory many times over what ever we maybe facing that is not pleasant. I see it from the "well-wishes" and prayers right here. :):) I must say the infusion center was absolutely perfect! We walked right up to the desk, they already had all of my paper work done and ready. All I did was sign two forms. From there we did not even get seated good, until a nurse came and got me to take me to the back. Each room is small but neatly done in a way there is enough space for the patient, room for a guest, and then the nurses have space they can work, setting up the IV's and so forth. It was just a very pleasant experience from start to finish. The nurses were so cordial. Each one of them with a smile on their face and constantly asking me if they could get me something, asking me how I felt, they went over each thing they did as they did it, & just were as nice and pleasant as they could be. I know there have to be days, like ours at times, they just may have their own issues for nothing, but they certainly keep it in check if they do. Again, it was a very positive day for us for both of us. My husband sends his thanks you's and really is also so humbled by your thoughts, well wishes and prayers. Anyway, It took about 6 hours as they had told me. Once I was "hooked" up they have me medication through the IV to help keep side effects to a minimum, and two pills also. Then they started the Rituxan and it was 5 hours also to the minute when the bag finished. So, far, so good. I really have not felt any "side effects", other than I was just exhausted by the time we got home. But, that may have not actually been the medication, but just a combination of getting up at like 2:00am, neither of us could sleep, and then all of the stress with the infusion (just the not knowing since I had never experienced one before), and the rest of the mess that has happened over the past two weeks. It is like all of it has begun to sink into my brain and soul. Thus, the "anxious" feelings sometimes follow what really has happened. I can go through something that is really stressful, and think okay, well I am a little stressed out, but this is not too bad. Yet, two weeks later after it is all over, then I get the anxiousness surrounding the event or events. My stomach seems a little bit queasy this morning, and I did not sleep but two hours at a time. They have me a Solu-Medrol VI solution med first that took about 30 minutes. That is one they say helps alleviate some of the side effects, plus in about 3 days you get that :boost: of energy that comes on a couple of days after the medication. That sometimes keeps me from sleeping, thus it was sleep a couple of hours, get up for a couple of hours, all night long. Other than that noticing the movement disorder just a bit yesterday about 45 minutes before it through. I am a little shaky this morning I can tell, but all of that is to be expected. So, I am happy with all of that portion of this medication. Now if I see some results as far as reduction of pain, swelling, inflammation and so forth, then that will be awesome. The very MAIN thing I am looking for is the slowing down of the degeneration of my joints. IF we see evidence of that either slowing down or halting that, I will be in great shape at least mentally.... Again I want to thank all of you, and continue to pray we see some results over the weeks to come. Of course with this kind of medication there is always a very small chance of developing a certain side effects that are not all that great, like a certain type of cancer, and a couple of other ones that are not something you would want to have to deal with. My Rheumy said he has never seen a case where anyone developed any of the other side effects later, like the bad ones. So, the chances are definitely minute against what the medication can do to make me better for sure.




I have to laugh just a bit at myself today and actually at my Mom. I think I had already mentioned her glasses came in day before yesterday. Well, she called me and said "something" was wrong. She just could not see out of them at all, and saw out of her old ones better. So, I went and looked everything up, and I had the script correct in the system. I knew that the online place we bought them did redo them before they even sent out the 1st pair they made. On their final inspection something did not seem right to them, so they remade them. With that it was hard for me to fathom they made them wrong, since they are so particular on that final check before they mail them out. Anyway, my thought was the doctor had her script wrong. It appeared "odd" to me when I first picked it up. I just felt like they "left something " off of it, or maybe it was not really Mom's script at all. The print them now off the computer, so anything could get mixed up. So, this morning (and it is Mom's 78th birthday today)... I call the eye doctor, and so happens they are here today until noon only. So, I call Mom, Jim talks to her first and wishes her a happy birthday... then I get on the phone and begin to tell her we need to get going, so we can go to the eye doctor take the both pair of glasses and the script and find out what the deal is... well she is stopping me, saying on No, forget it. She says she don't know what it was the other evening, but she decided to put the glasses on again yesterday... and that she can "see" fine out of the new ones!!!!!  LOL!!!! I am not sure what happened. I think it was late in the day when they got delivered. She was already tired... and she did not think to keep them on long enough for her eyes to adjust to them. He did not change it much, but I know he did tweak her script some... anyway, now she says that are fine... and she is going to leave them as is... OMG, I just sometimes want to scream... cry... laugh or hit something ;)... anyway, as long as she CAN SEE is what I told her... do NOT keep them if something is wrong... because that is silly... they will redo them for 100% guarantee... anyway, I have not even seen them on her yet, but I am going over there later this afternoon so I will then. Yesterday before they began the infusion of Rituxan, they gave me a 30 minute infusion of Solu-Medrol. That is so they can lessen any side effects that might go on and they also give you a Zyrtec for any type of allergy thing like possibly itching. In fact they gave me a Tylenol, and I guess possibly some may get a slight headache from it. As she was getting the Solu-Medrol going, she asked me if I had it before and of course I said YES!  She said well you know then it may make you have a hard time going to sleep for a couple of days, plus it actually will make you feel "better" ... I said more like "hyper",,, depending on what dose.. and it must have been a rather large dose, plus it went directly into the blood stream through the IV, so it hit me rather quickly. When it is an injection into the muscle, you don't get it as quickly, plus you don't get it as much, as doing it in the IV. So, last night I was wide awake every 2 hours, which for me is really nothing unusual. But, boy talk about feeling like I could jump over the moon!!! I am just fidgety today, and my mind feels like it is going a hundred miles an hour, and I just feel inside like everything is jumping around. Anyone who has injections sometimes of any type of Prednisone, knows what I am talking about. When you get a large dose like that, during a flare, etc... it has a tendency to "hit" you almost like "speed"...LOL, and being that I don't remember having it via IV before, or if I did it was when I had surgery etc... so I would not have really noticed it, it makes you feel almost "invincible"... you just have way more "mental" stamina, and even what feels like "physical" stamina than you really do... So I feel like "super woman" today! LOL!!!! :) If someone could "bottle" this and sell it, without all of the horrible side effects that these corticosteroids cause, they would be very, very rich people. Alas, it does have some horrid side effects if you must be on it for the long haul, especially in larger doses than anyone cares to think about. So, until someone can think of a way to take out what causes the bad stuff, the good feeling only comes every once in a while when you have a procedure like that and need it for a certain medical purpose. We have no "major" plans for the holiday weekend. We may grill some steaks "Rib-eyes" over the weekend. One of our markets has them on sale for a great price, and last time I bought them at that store, they were awesome! So, that is probably our huge "outing" for the holiday weekend... for those of you out and about, whether traveling, boating, rafting, or whatever you may be doing, please take care and be safe, if outside take care in the heat, and watch out for the idiots on the roads... more later, Rhia

Great Articles How Lupus effects the Body, RA Myths,

http://health-tools.health.msn.com/lupus-health-center/how-lupus-affects-your-body/?did=t2_mod2

The link above takes you to a great article that explains how Lupus effects the body in so many ways. It is very plain spoken and easy to understand. For those of you just starting out with Lupus, or one of the other thousands of Autoimmune Illnesses, and you maybe trying to have family and friends understand also, this may prove to have some very useful information in it.

http://www.webmd.com/rheumatoid-arthritis/features/rheumatoid-arthritis-8-top-myths?page=3


This one kind of helps to rid us of some of the various "wives tales" and rumor we hear a great deal about when it comes to RA...


http://www.facebook.com/l.php?u=http%3A%2F%2Fhealthyliving.msn.com%2Fdiseases%2Fibd-and-crohns%2Fdrug-shows-promise-for-people-with-colitis-crohns-disease%23scpshrjwfbs&h=fAQGopu5h&s=1


Crohn's Disease and Colitis also hit those with other Autoimmune related illnesses and/or can be a huge issue for many as "free standing" illnesses. I found this article interesting on some new medication showing promise for these two...

\http://www.facebook.com/l.php?u=http%3A%2F%2Fhealthyliving.msn.com%2Fdiseases%2Fcold-and-flu%2Fcould-flu-shots-help-prevent-heart-attacks%23scpshrjwfbs&h=WAQHWDfNx&s=1

I think most of us know taking an annual flu vaccine is just a smart thing to do. Whether you are dealing with a chronic illness or not, at the rate our flu bugs tend to change and alter themselves, staying on top with the latest vaccination is just smart. Although when you are dealing with either chronic illnesses, or something like have had a prior heart attack, things such as these types of immunizations may prove to save you from another possibly. The article above talks about if getting your flu shot could possibly help to prevent a "heart attack"?


Trying to catch up a little here on my blog. I have been so completely covered up with all of our own "drama" with especially medical stuff, that I feel I have not been here to post as I usually do. So, I shall try to get much of this on here for all of you.... have a good rest of the week... I pray wherever you are reading this, you are either safe from wild fires or drought, safe from flooding and down pours, safe from sink holes, and hurricanes... severe thunderstorms, snow, sleet and all of the other crazy Mother Nature's "little games" that are not so little at all going on... Rhia