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

Dealing with a Charge of $4,500.00 for a procedure you need....

Okay, hold onto your "hats" because if this one does not upset you, floor you, and make you want to run like hell away from insurance companies and medical care, then you are much stronger than I am...

I have been awaiting a call from the "infusion" clinic all week long. My Rheumatologist and I decided it was time to stop the Humira, which seems to not be working for me. He had two choices for me, both of which are infusions. One of them, I would have to have an infusion once a month, which meant a trip to Dallas every month. The other, Rituxan, that I have two infusions to begin it, two weeks apart, THEN I can go anywhere from 4 TO usually 6 MONTHS before I need another two week treatment!!! Well, you can imagine my decision! Of course going a couple of times a year versus a monthly trip to Dallas was music to my ears, and pocket book. He also agreed that the Rituxan seemed to be a better fit under the circumstances of the fast degeneration we are seeing in my joints . So last week, I believe a week ago this past Wednesday, he began the paperwork. In fact, I went for a new bone scan and blood work while I was there at the University where he practices, and by the time I finished those, the infusion department was calling to tell me they were already working on getting me approved through insurance and so forth. So, I thought WOW they are on the ball with things.  So, I felt like this would be done very soon. I really never gave much thought to my part of the "co-pay". I knew it would be considered more on an "outpatient" either hospital or stand alone treatment center, so my part should not be but about $100.00, possibly $200.00 depending on how they coded the center itself. Even though we have been out a butt load of money lately, I knew we could swing that. Anyway, I did not hear anything last week, but I knew that Humana usually drags their feet on prior authorization stuff so thus I figured it would be this past Monday or Tuesday before I heard anything. Well, over the weekend on Saturday, I went to my Mom's for a short while. When I returned my husband said that a woman from "Humana" (Right Source Pharmacy is how the call came up on caller ID) called and said that I was "approved" for the Rituxan! So we were just elated! We though wow, quick, and for the insurance to call on a weekend, that was a small miracle. So, Monday I waited all day for a call, and nothing. I called the infusion center late in the afternoon on Monday, and was told that they "may" have that paperwork, but it would not have had time to be processed and my "treatment" plan worked out etc. So, I thought okay I will hear the next day. Well, Tuesday came, nothing, Wednesday came, and I even got a letter from Humana saying I was "approved" for the medication. I was starting to get antsy by then, so Thursday afternoon late, I called the infusion center again. I was then told (by someone else) that YES, my insurance approval was in, BUT they were still working on the treatment plans and I should hear shortly, Well, we were "miffed" about it, mainly because they had acted SO QUICKLY right from the beginning, calling me before I could even leave the facility the week before and now it was like, well we will get to you when we can kind of an attitude. AS all of you know, and have read, my last couple of weeks, and more like couple of months have been just about more than a human should have to ever deal with. Everything that can have happened, should not have happened, etc.. DID or DID NOT happen for me. Between dentists (several appointments including two teeth pulled), glasses for us both, the entire realm of our PCP NO LONGER wanting to have my husband as a patient, having my hips and elbows injected, and finding out I have much more degeneration than just a couple of years ago, and the list goes on...I was just impatient as heck. So, yesterday, amidst waiting on a call about one of my own medications that I will be out of over the weekend, and my doctors office has usually called it in well before now, and the infusion clinic, and some other stuff (it is even down to the fact that we ordered Mom's glasses from the same place we did ours, and when they got to final inspection something was wrong, and they had to make them over again..which we are thrilled they caught the problem, but again it delayed her getting them)... that my nerves have had about all I can take. Behind the "scenes" of doctors, being sick, the pain.... etc... I helped my Mom order a new "settee", a new glider recliner, got her on a new phone service that is WAY cheaper than AT and T is charging her for LOCAL SERVICE ONLY, and just a whole barrage of things for her, and our own daily stuff. So, my plate has been full, running over, and just needing to be all thrown out and re-ordered (LOL).. even though some of it is "good stress", it is still stress...
So, late yesterday afternoon (after the phone RINGING ALL DAY LONG FROM JIM'S CLIENT) I had just about given up on a call. I was NOT hearing from the infusion center, I was NOT hearing if my medication got mailed out, and we both were just puzzled about all of it. Okay, the phone is FINALLY from the infusion center. So, we got excited! I began with an introduction from "Lynn", and as she started off, I could tell in her voice, she was "hesitant" about discussing benefits etc.. The first part of that conversation started with well, we have spoken with your insurance company, and your part to pay is $4,500.00!!!!!!! YES!! You are not seeing things! She did day FOUR THOUSAND FIVE HUNDRED DOLLARS!! And quickly she began saying BUT we have a CHARITY PROGRAM YOU MAY QUALIFY FOR ON THE BALANCE! Well, all I heard was that astronomical figure and here I was thinking $200.00 at THE MOST!! So, I started asking questions, like YOU ARE IN NETWORK with HUMANA RIGHT???? She told me yes several times. Now by then I was in tears, and I still have some of the laryngitis, thus I told her I would let my husband finish the conversation with her. By this time I was sobbing uncontrollably with my puppies on the sofa. Here was one FINAL HOPE with MEDICATION to possibly SLOW DOWN the horrid symptoms of RA, Lupus and possibly now they feel I "may" have MS, and my insurance has totally lost their minds., and there was NO WAY, NO HOW, I could EVER AFFORD that! I am already still reeling over the cost of a damned root canal and crown! Jim was still talking with her about this charity application, and continuing to question her about my insurance. It just was NOT RIGHT! All I should owe if they are IN NETWORK was a 100. or 200. co-pay! Hell I have had inpatients stays, major surgeries, was in the hospital 6 WEEK! and none of that cost anywhere near that figure. Inc fact for the most part I paid very little with the exception of an inpatient room charge on a couple of occasions. So nothing made sense. Jim was being send via email this "charity" application, and in the process he asked her if they would PLEASE HAVE ONE OF THEIR SUPERVISORS CALL HUMANA and RE-VERIFY benefits!??? She said of course, and Jim also got on the phone and call Humana also. He is so lucky, he got through quickly and even got transferred up the "food chain" to several people that were "higher up" and had more knowledge and more "pull". In fact they even put one of their "reps" online to go over my benefits again and see what the hell was wrong. Well, I KNEW, then they were trying to put the medication under PART D DRUG PLAN, rather than as an OUTPATIENT VISIT TO THE INFUSION CENTER! I knew that had to be "co-pay" in regard to "dough nut hole" crap with my Part D, drug plan by the conversation he was having with this guy. Well, in the meantime, after a very long talk with him, and I am saying benefits were verified WRONG, they are trying to say it is like me going to the "pharmacy" and picking up some "prescription" medication that costs thousands of dollars, then of course I would owe a co-pay etc.... and so forth, meet "deductibles" and so on. The phone rings again as we are talking about all of it, and I am saying NO WAY, NO HOW, and I WILL NOT TAKE CHARITY! I will just go back on less expensive injection at home. It is Lynn, the first lady that called me. I walk outside and Jim is saying, say that again?? He said, well we can "deal with" that. And he is smiling at me... I am so totally distraught by now, I did not even care. Well, come to find out, I WAS RIGHT! HUMANA verified benefits UNDER PART D, NOT PART B and that was totally WRONG! I do and will only OWE 100.00 !!!!!! They totally did not give any information correctly to the infusion center, and I guess the infusion center (even though they said that kind of out of pocket they do not see often) never questioned why so high??? Humana was basing everything on like I said I went in and got the Medication itself from the pharmacy.... and NOT as an outpatient "treatment".... By the way, Humana got their butts reamed by the Infusion center supervisor, and I have not called them yet, but believe me they are going to get an ear full...this has happened more than once this year with myself and my Mom... SO TO MAKE A LONG STORY a little shorter. the fact is I ONLY OWE 100.00 "CO-PAY" & I am set up to have my 1st infusion TUESDAY! So, I am already deciding what to take with me, since it is about a 6 or more hour process... :):) My main question and moral to this is HOW does someone elderly without anyone to help them DEAL WITH THIS??? If no one was around to help my Mom, like I do fighting them tooth and nail all the time, she would be paying lots of money out of pocket that she does not owe. She tried to do it with the surgery center last year. They filed with a wrong code, Humana paid it wrong, and they tried to charge Mom over 600.00 that she DID NOT OWE! It took me A YEAR to get them both straightened out... with an apology finally from the head guy at the surgery center... So, this frightens me on so many levels... I feel for those who "do not know" better.. and also HOW AND THE HELL IS ANYONE SUPPOSED TO AFFORD THOSE KINDS OF ASTRONOMICAL TYPE OF CHARGES... IT IS INSANITY!!!!! It is a wonder I did not have a heart attack... I am so very, very thankful that God was walking with me through it all... That is MY STORY and I pray I do not have to EVER GO THROUGH THAT AGAIN!


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Next post to go with the one above...

I can say that I am GLAD that I DO KNOW it well enough to KNOW THEY WERE WRONG! I guess if I have any type of thing the Lord has given me, is the "sense" enough to know when someone is being ripped off, used, abused, and taken advantage of. I have helped my Mom, and several others with things that without my help, they may have paid a great deal out of pocket that they DID NOT OWE! So I am very thankful that I have been given that "talent" if you want to call it that. It burns me up to no end to watch someone take advantage of someone else. Or someone do something or not do something right just because they are lazy, inconsiderate, OR like a good for instance just today with me, someone feels the "need" to exert their "power" over another to show they can.. I have ONE medication that comes from a pharmacy in Dallas. Always has, always will. That is how that doctor wants it, and he had them ship it "priority" mail to me. But, I still have to call about 5 days early, I usually do it about 4, unless a holiday is in there, or sometimes I know he is only in the office on Friday half a day. So, that is what happened this time. I called my script in Tuesday afternoon. I am due to RUN OUT by SUNDAY. So, because he is only in the office a half day on Fridays and he also does surgeries now sometimes on Wednesdays. I wanted to make sure I did it just early enough that I would not run out and be left hanging. Well, the "usual" woman that takes care of all scripts must be out for some reason. Because she usually gets it out the same day, or always the next day, I get a call from that pharmacy, they send me the meds, which unless something happens, and it has before, I get them the next day. Well I called and just left a brief message asking the other lady if she did get my request (you have to call their refill hotline to ask for refills) and make sure that the hotline did her the message. Well, this other "hair brained" witch must be doing the scripts for some reason. Maybe the usual woman is out this week etc. So, this other "butt" calls me back yesterday about noon and says "yes, I am calling it in today.. you were a day or two early... well no I was not, it has to be mailed... but I kept my mouth shut... well I know how she is... she loves to "play" MS. Authority... she WAITED (and I knew she would, I just felt it in my bones ) until LATE LAST EVENING. to call it in. so the pharmacy did NOT get it in time to MAIL IT YESTERDAY. SO, NOW, I call them and they are "getting it ready" and it will go out today!!!! Well that is cutting it TOO CLOSE!!! SHE should have DONE HER JOB CORRECTLY and called that script in early yesterday. She had it for two days, and could have already done it. It was only about 4 or 5 days before it was to run out... but she is that kind of person, if she thinks she can MAKE HERSELF LOOK LIKE SHE IS SOME KIND OF AUTHORITY, then she does it and guess who suffers??? The Patients!! There was NO reason to HOLD it up, other than being a jack ass. The normal woman would have called it in on Wednesday, I would have them no later than today... no harm, no foul... now if something happens, I may not have it tomorrow... hopefully the mail will go as it should and I will receive the package tomorrow... but SHE wanted to make herself LOOK like she was IN CHARGE!!! Those are the kinds of people that just burn me up!!! They DO NOT give a damned about anyone but themselves. She could care less if she harms or hurts someone else as long as she "got" her way... and that was just to be ridiculous!!! I see it time after time... and not just myself... I watch people bless their hearts get run over like a tractor trailer by garbage like that... and they just "take it" because they do not know NOT TO! People do that with their doctors. We were "taught" that doctors are "Gods" ..What they said was the BIble and we MUST abide by it... BULL, if you go to a doctor and you are not satisfied with their practices, or you feel like they are not taking care of you as they should, then GET ANOTHER ONE!!! Do NOT think they are PERFECT! We now tend to know better, but many people still and my Mom is one of them, think what that doctor says is gospel,., it happened with her heart... the "1st" test they ran on her heart back in January showed "extreme mitral prolapse" BUT MOM was NOT having the SYMPTOMS that really showed it being to the point of being SERIOUS! The doctor was already talking about taking her to Dallas, doing a procedure, then doing open heart surgery etc... and it MAY COME TO THAT LATER BUT... I sat down and said, can we not do something else first, before we jump off into major heart surgery??? So, due to her NOT taking her meds that morning of the first test, and having a great deal more fluid on her than usual, the doctor thought that could be contributing to it "appearing" worse than it was. Well, the doctor put her on a larger diuretic pill, and asked her to drink some "less" fluids, especially the 3 days before the next test... and when they did another test... it was NOT severe, and in fact it was not even bad enough to go for another special test in Dallas! So, there are times if you do not say something, or someone does not say or do something, you may go through something totally not necessary.... and I guess somewhere in my "genes" is something that makes me want to "protect" those that are taken advantage of, in any way, abuse, of any kind... and of those out there that are like a pack of wolves, just waiting for some poor soul to come along they can "pounce" on..


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Third to go with 1st two....

The "benefits" and entitlements we "should" get that honestly, we the people paid in for all the years we worked seem to have gone for everything but OUR entitlements! That "robbing" Peter to pay "Paul" ... thus now when we are having people work many more years, and then retire at later times, they also collect more of their entitlements like Medicare and Social Security for more years. I guess no one thought about that when people lived to be only in their 60's or so. Now we have MANY elderly that are still driving their cars and taking care of themselves into their 80's plus! Thus we are going to need more money to pay our their benefits, and then we have children that soon will be in the work force headed for either "put your own money aside for retirement" or get older and have nothing. It has not been that long ago, that my Dad retired. After 45 years at the same place, he got a retirement and between that and his Social Security, they did okay. But, that was also when interest rates were high and they made a good deal of money on investments. Now that same money is making NOTHING! I see what tiny amounts Mom's little bit of nest egg makes and there no way one she could "live off what little interest" that money makes now. IT is insanity. It seems I use that word a lot lately... but it is this entire nation, our entire world has just dropped down to dog eat dog, and GREED is the name of the game. I am truly "ashamed" of humans and some of the horrible stunts they pull. So, I get the entire thing about trying to get "benefits" you are due to even work for you. And now I read that our UPS corporation is cutting their employees families completely out of the health insurance! I don't even think they are going to "offer" the benefits if you pay out of pocket for them! And UPS is NO SMALL corporation! I also cannot fathom that "cities", huge cities in the US can go "bankrupt"???? How does a city spend so much money when taxes are paid by citizens and all kinds of "revenue" is made, go "belly up?" What does that tell us about our nation? heck our World? WE have "nations" in the same shape! Their "money" is not worth the paper it is written on... same way with homes here. How can you take a home that was just valued at 300,000. a couple of years ago, and it only be worth 100,000.00 today!???? Where the hell did all of that come from??? Property "used" to be the "best" investment you could make. We were told it "always holds its value"... well I am here to tell you NOT ANYMORE! I don't think there is one item in this world that truly will hold its "value"... everything is volatile... nothing is "steady"... we live in a world much like a volcano... we never know when it will explode or worse implode all around itself...


Ah, and I am quite sure... and am NOT quite... through....


  

Giving a "Voice" to All of the Frustration of Being Chronically Ill Human Being...

I believe the very first thing I want to point out is in the "title" of this blog post. That is the two words, "Human Being". None of us are robots, although as of late, many act like it. None of us are beyond mistakes, stresses, illness, economic woes, job losses, kid issues, family problems, and an entire gamut of "what could" and does happen to "good" people. When I say "good" people, I am speaking of us main stream normal everyday folks, that try our best to do our jobs, take care of our bills, raise a family, and be a "stand up" kind of person, who wants what is best for all. We don't begrudge others a nice life, a good vehicle, health for them and their families, and the ability have have what is considered a "quality of Life" we feel is truly worth living.

All of that sounds very simple. Life.. used to be "simple". I know what some will say to my next statement, "life seemed a great deal more simple, when we did not have but a one room school house, raised our own food and animals, got our milk directly from the source, had the "ice" man delivery the "ice" block for your ice box, had a radio NOT a TV, not the internet, not fast cars, cell phones, video games, and back when kids went outside to play. When kids played then, even in my life, I went out to "use" my imagination to occupy time. I was an only child, thus I spent Summers outside, with my dollar, my little table, making up all kinds of different things that kept me out in fresh air, active, and not sitting in front of a television for 12 or more hours a day. I can see now "hind sight being what it is...20-20" many things that are contributing factors to all of our "hardships", our downfalls, our chronic illnesses, whether emotional, mental or physical that we want to shove under the rug, run to the doctor, take a quick pill, much like running through the "drive-thru" for coffee, we are too lazy to park, get out of the car, and go into a place to get coffee anymore.. our excuse?? We are TOO busy! Well, if you are TOO busy to go inside and buy your lunch, get a donut, pick up a six pack of beer (now that you can even drive thru for freaking beer), then I say you are TOO DAMNED BUSY!
All of the above seems to not have much to do with what the title of this post is, nor does it seem any of it relevant to chronic illness and chronic pain. But, it is all relevant. Our entire lives have evolved, in good ways, I will not say that all we have accomplished is "bad". But, we have also "engineered" ourselves right out of jobs, "automated" our lives into a never stopping conveyor belt of high prices, lower quality items, food that is "tainted", medications that are "tainted", people that are not willing to get up off their butts and do their jobs. If they can't sit behind a desk and be "boss", then they think the job is "beneath" them. Boy, you cannot tell me you do not know those like that. I have met several in my life time so far, and it gets worse everyday.
We will not accept that WE HUMANS HAVE RUINED OUR WATER, AIR, AND LAND!!! WE have MELTED THE POLAR CAPS. WE have CAUSED CANCERS, HEART ATTACKS, AND STRESS THAT SEND PEOPLE RUNNING TO THE NUT HOUSE! Or "self-medicating"... how many do you know that weekly, daily use alcohol, food, TV, video games, being on line in a social media place, possibly other drugs that are not "legal", sex, shopping, spending more money than they make... and the list goes on and on... of ADDICTIONS! We totally rely on so many addictions, whether to food, spending, or alcohol to "prop" ourselves up daily so we can do it all over again in this rat race we call life.
We will bitch, moan, whine, and stomp our feet, of things we do NOT believe are RIGHT! BUT, take action?? IF you can gripe about it, then you can DO SOMETHING! Write an email, a letter, make a phone call, attend a rally... do something other than give these things "lip service". I can tell you right now WORDS with NO ACTIONS, gets you NOTHING BUT FURTHER UPSET AND STRESS! It only leads to more frustration, more depression, more attitude of giving up and throwing in the dish towel of life. So, why are we so in "fear" of voicing how we feel???
What makes us rant and rave "online", but come up to the person, or place, or thing that is upsetting you, and lips are closed, mouth shut, and a "pleasant" face put on... in other words DO NOT rock the BOAT!!! Why??? FEAR???? Have WE as a society that is supposed to be the MOST DEMOCRATIC (I get to where I despise that word... we need a "new" word for those that can give "voice" to their opinions and thoughts, without feeling like you have to "apologize" for what you have done or said. As long as you are NOT HARMING YOUR NEIGHBOR, or causing misery for someone else, you SHOULD BE ABLE TO STAND UP AND SAY HOW YOU FEEL! You should not feel as if your friends, family, doctors, other professionals, anyone is going to "stop" seeing you, not take care of you, no longer "fill" your medications... just because you may not "see" something the same way that another does. WHY are we SO ASHAMED of our own thoughts and feelings.?

We live in enough fear of terrorists, of bombs, of those that shoot people for no reason, of the insanity that happens here daily... we are fighting wild fires,, droughts, and ALL OF THE MOTHER NATURE EVENTS that if we look back in history, MAN CREATED HIS OWN DEMISE. We have ignored our Earth way too long. We have ignored polluting it, of using it up, of covering it up with concrete; then all we can do is "finger point" to who did it? ALL of us! Each and everyone of us are contributors to our own realms of waste, pollution, of the demise of the medical profession, of the demise of our own government. We can bitch all we want to, but WE PUT THEM IN OFFICE! If it is broke, FIX IT! Sometimes the well just runs dry and you have to freaking drill for a new one. And this "well" for our government is dry and getting drier daily.

Ignorance is NOT bliss! It is just plain ignorance. And "denying" all of what is happening, is just sticking your head in the sand and watching for the other shoe to drop on it.

Now onto the "REAL REASON" I am writing this morning... As you can tell, if you are following me here, or on Facebook, my life, as well as my family's life has been in a freaking turmoil now for more than weeks, let's try months. Since January of this year, thank goodness for my spouse, and my Mom, and all of those out there that are "rooting" for my side of the ball game.
I began with what seemed like the "flu". Made sense. After all it was "flu" season. Yet, each day, rather than get better, I seemed to be worse. I began to have pain, and it got worse with each passing day. I developed worse fatigue, muscle aches, deep down in the bone pain, in my legs, my feet, my ankles, hips, and lower back. I was so extremely fatigued, that for weeks, I was literally not able to even drag myself around my drive way to walk, water my flowers, hell I could not even sit at my computer. I went to my regular doctor, my pain doctor, to a neurologist, in fact 3 of them... and had every kind of blood test, EMG, NCS, CT Scans... all coming up with "something" small, that may have "contributed" to the pain, etc... nothing that should cause such massive pain, massive fatigue, and make me feel like I had been just ran over by a bus once or twice. We even questioned my pain pump and went so far as to have the medication completely removed flushed and put new medication back in.
this was already mid-February. We did not know where else to go. I had a couple of doctors that gave me a "new diagnosis". One of which was "myasthenia gravis", and they even suspected Multiple Sclerosis, of which had been suspected on several occasions. This went on until about the first of March. Then one morning, I woke up, and all of the "symptoms" seemed somewhat "better"...  each day thereafter it seemed to have a bit better feeling. We never put our finger on the reason why. so in essence I think myself, mu spouse, the doctors "chalked" it up to the "Lupus" and a very bad flare... and the RA, of which the meds were not working as well as they should be... plus I probably did have the flu, and all of it caused that "perfect storm" of illness that raged through my body. What I never did really think about, is in the meantime my pain doctor had "upped" my pain medication when all of the stuff began, and he left it like that. So, possibly I was of course better, other symptoms were going away, but the "pain" could have been somewhat masked over by the increase (change) of pain medication. I got "better", yet I really never got "well". I had other health issues come up, a "myoglobin" issue, that would be a contributor to muscle pain, the RA of course, of which the Humira was definitely not working as it should have been, plus several other things like finding out I had radiculopathy issues, and my lower lumbar spine had definitely done some deterioration in midst all of. Any and all of those things could be combined with my Chronic Lupus/RA issues, to be the culprit of my ongoing new type of pain/illness issues.
Well, the boat seemed to rock a little and put me back in whatever I want to "think" is kind of "normal" for my life. Yet, that was NOT to last long. Come about Mother's Day. I recall it being close to then because I and my Mom were planning to go to the Casino to spend the night. On that Friday before I began to just feel lousy. Again fatigue set in and almost simultaneously, the pain I had so hoped would not return was back with a vengeance. I was definitely in no shape to make even a 2 hour trip to have a good time for Mother's Day, so we decided to postpone and go the following weekend. Well, by then things were already worse. Again, the severe and deep bone pain, in my hips. legs, feet ankles wrists... it was all back once more. This time I went straight to my PCP, getting prednisone injections and a 14 day step down of it, and having them do what they could to "stop" again what we thought was a very bad flare. From there I have battled everything from several of my teeth needing to be pulled all of a sudden, to several cavities, to the double vision I have been fighting for over a year (not one doctor, even the best "neuro-opthamologist") ever figured out why my vision is double., to the excruciating pain I was and this time again it required not only an increase of my oral "break through" meds, BUT an increase of the medication that is in my pain pump. I have spent week and weeks, almost crawling at times around my house, not feeling like even baking something. I have been to my orthopedic surgeon who injected both hips and both elbows that were giving me heck. He feels that my thumbs are too deteriorated to even put medication in, and my hips, and elbows also show signs of further deterioration, which could cause the pain in my legs, hips, lower back, feet and so forth. I am continuing the battle with my own health issues, then week before last I got not only just slapped in the face with, but knocked down with a "suddenly very Odd" "certified letter" from our own Primary Care Doctor. Now this man is wonderful. He diagnosed my Lupus. He had been the doctor who found much of what was going on with me and had been working to "fix" what he could, and sent me to other doctors to do other things to help me feel as well as I possibly could, under my chronic health issues.
This "letter" came while I happened to be at my Mom's and my husband got it. In fact it was for my husband. When I got home, I stepped out to speak with him on our front porch and I could tell by the look on his face, something was very wrong. I had not been gone long, so of course, I was "in a panic" wondering if something happened to one of the dogs, or he had gotten a phone call with bad news. When he began to tell me about this letter, a certified letter he received in the mail, I asked him what he had won? Then I abruptly saw and heard that this was no joke, that this was a serious situation, and after he finished, I had to read the letter and see with my own eyes what he had told me.
It was very formally addressed to him, as if a "stranger" had written it. Yet, this certainly was not a "stranger" at all. This was OUR FAMILY PHYSICIAN that had been our doctor now for at least 6 years. For me, a little longer, because I went to him first. In fact I was probably one of his first 15 patients. He had not been in practice very long at all when I felt like I had found the "perfect march" as far as a family practitioner. Not only did he have an incredible "bedside manner", he is intelligent, he was way educated much more than the usual family doctor, because he tested me and found out things about my health issues that not one doctor in 40 plus years had been able to find.
My Mom was also looking for a new PCP. Her previous one was old, and going out of business basically, so I suggested my new one to her also. She went and also was very pleased. He seemed to be right on top of the latest and greatest. At first, he did it all. There was not any of this referring you to 15 doctors. He tested, found out what was wrong, and with "your" help as an "educated" patient (another big plus in my book, he loved educated patients), he would treat you himself, if possible without sending you all over the country. Again, a small town, with very few PCP in it all the years I was here, this doctor was like an angel sent from above. Things rocked along, and my husband began having issues with his lower back. He does not have insurance. Thus he would be a "cash" pay patient for awhile, until we could afford some kind of policy. But, this new doctor seemed to be much more concerned about "patients" than money, and he charged a very nominal charge to see my husband, he also tried to keep tests, scans, and expensive things out of the picture unless absolutely necessary. So, when my husbands back began to give him more problems other than just the usual three or four times a year, this doctor did a few Xrays, determined the situation was probably something he was born with, and as the years went by, arthritis, and a narrowing of the spinal canal was putting pressure on the main nerves in the lower spine, thus causing horrid pain off and on. Again, we were very impressed. He tried several different types of medications, also treated him for blood pressure issues later, and High cholestral problems, and we were ticking right along, no problems. In fact I had highly recommended him to anyone that happens to be in need of a family doctor.

Well, there was a couple of issues that we had to deal with off and on. One, was the "office manager". He was just an ass, to put it bluntly. He always looked down his nose at everyone. He thought he knew it all, and even though he I am sure is "good" at his job... he is NOT good with people at all. I had more than once complained about his attitude and that I did NOT want to be treated as if I am pond scum. I was certainly not bad about being an overly needy patient, and I tried to refrain from asking for too many "favors". In fact, I really never asked for anything other than a few forms to be filled out in order to get my husbands medication filled for free or for much cheaper than the pharmacies.

This doctor diagnosed my Lupus and RA. He was the one that started me on medications for them, and took care of me, while I tried to find a Rheumatologist with some kind of sense for sure. To this moment, I nor Jim, nor anyone can figure out what the hell went on, and what caused this "sudden" issue, when it is plain as the nose on anyone's face that there was an Error, on the part of their office to NOT tell the Lab to DO THE BLOOD TEST A CERTAIN WAY OR, the LAB did NOT run it the way they were told. Either that, or there is SOMETHING, SOMEONE, is NOT telling me! I know what I see. I know what happens when I am around and there to witness it. But, if I am totally left in the dark about an issue, or something not right, then I cannot make an informed "reason" as to why something like this happens.

Now I do know a couple of "facts". First of all, this business about the government, the DEA, the entire realm of mess in Florida with pain clinics and seedy "quack" pain doctors etc.. has definitely put "fear" into lots of people, along with made a "Good medication" when USED CORRECTLY!, Look like a monster! But, as I said "used CORRECTLY"... IT IS LIKE anything else, if you "abuse" it, then it is Bad for you... or bad for whatever... Then you give "too much power" to some people in a place such as someone over the "legalities" of meds without any governing power over them to oversee what is done, is NOT harming some, and you get a freaked up pile of mess, that THE LEGITIMATE PATIENTS suffer needlessly from! There is NO reason, not one that any person that is truly a Chronic Pain Patient, that has NEVER abused anything, that has lived by their "pain contract", that has "passed" "tests" of whatever, all this time, or been treated like things are totally fine, only to be delivered a ridiculous letter, without any type of warning, without one sit down in front of you and explain WHY this is happening! IF anything is wrong with this, THAT POINT is what is MOST WRONG! WHY NOT have a CONVERSATION AND EXPLAIN this to a PATIENT, rather than take the "unprofessional" and just plain rude way, and not speak to them, not answer their emails, not answer a phone call, not ask them to come in and have a visit, nothing... and then you are also seeing their families??? Now how is that going to go? Like I said above, this situation puts me in such a horrid crack... I am stuck between first of all NOT KNOWING for SURE what is going on, only what I see and know... it puts me in a place of course of being upset, embarrassed, and thinking why should I see them if I could get the same treatment. Down the line a few months, and they stop refilling my medications? And I am not talking about pain medications, I am speaking of medications for my Lupus, my blood pressure, heart and so forth. If this doctor is leaving, or is "mad" at my family, or has something with us that he does not want to treat my family, then he should be professional enough, to just speak up face to face, and tell us what the hell the deal is! If I or my husband, or my Mom, have offended someone, or hell knowing this town, God only knows what kind of stupid "rumor" he has been told... because believe me this town is known for its lying, gossiping, half truths. People do NOT get the entire story, so they "make UP" what they want to... in which sometimes people's lives get frigged up due to a flat out lie being told. Before you open up your mouth when it involves anyone's "reputation" or their "good name", you had better give it deep thought, and then really understand what you could cause. If you are going to "stir up harsh feelings" or cause someone to be "smeared" and you are not sure what you are talking about, it is better to just keep your mouth shut, rather than say something you will harm someone with by being nosy. Small town are noted for that crap. One reason why I did NOT want to move back here... the small town mentality, the gossip, the "whispering" behind your back... those things I just cannot stomach. Since I have been trying now for 3 days to "finish" this and post it, I'm going to say it is "finished" enough to post & if I have further thoughts, I will just add it on and let you know there is a new "piece" under it...