Wednesday, September 11, 2013

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

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


Facebook post below from earlier this am....

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