Wednesday, August 28, 2013

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
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