last infusion for a month..hopefully

Dec 17th I got lucky and they said it would be my last infusion until Jan 27th hopefully if my test come back semi positive and we can just handle the pills ;) my Bp has gone down due to the high Bp.meds and my heart rate is ok I still have papaltations and have to be careful. But hey no.more getting iv's like clock work...yeaah buddy!!! As of how I felt after day one last treatment I felt like crap for a cpl.hrs like usual. Out of it,In a zone,dazed,achey,sore..but today my first morning with out it I'm ok... About to take hot hot shower,relax eat well and try and enjoy a day with bubby. I do have a headache slightly but not as bad. So let's say our prayers that I don't have to go every day again ans maybe 2-3 days until I hit REMISSION BABY!!!!! New year new me can't wait! Xo have a great work week! Now off to attack.mommy duties.

glass mouth nightmare

Had nightmare I was driving had a piece of gum and ate thin paper slices of glass it had my mouth all cut up I was in a bad woodsy area road and was driving on gravel. A baby in a back seat crying I was dying and choking on sharp glass from a pack of gum I ate... 530am I want to thank u for letting b myself was on radio. I went under a bridge and my tongue was bleeding horribly. I could taste the blood so I woke up screaming and brushed my teeth over and over! Nightmares medicine goodness..goodnight

reba mcyintire

Ok I don't know what I ate or drank before bed but Reba talked to me when I woke up at 4am after my 2min which seemed like 30min pee break and laid back down. She had on a hot pink cowboy shirt with white trimmings that sparkled with high wasted denim jeans and a white cowboy hat hanging on the back with long red hair. She rode a white horse on the beach and said "gennifer,don't let this get you you are strong like the ocean and the wind blowing on the beach." Smiled and then started singing God is with you God loves you...Riding off on the horse. What the what!!!!!! Bahaha bizarre dreams I tell ya but hey I'll take that one for sure but God, I ask you...why Reba and her country voice?! ;)

itchy itchy my skin is burning..

I have been itching like crazy. Can't sleep. My skin is burning it hurts so badly. Maybe the meds,the lupus,the kidney failure ..who knows all I do know is it sucks!! I also am having the lupus rashes show up more on my chest and face..they burn also! My body is so inflammed I can't get comfortable. I feel like a true crack head scratching all the time and looking wore out! If only ppl knew what i go through....Xo

4am defeat and mother natures cruel games

It's 4am again and Im up at it! I just instantly wake up and and have energy. Not a lot of energy but more than during the day. Well I woke up from sleeping in Aidens room he had to hold my hand going to bed ;) moments I will always cherish! I wake up and notice Chris is just going to bed ( yea opposite schedules I tell ya) he kisses and hugs me tight bo says his goodnights and off to bed they go while I turn on family matters and polish my nails. Well try! My hands have been shaking like crazy lately like horribly shaking where i can't do much. I have always polished my nails so when I noticed I was having trouble keeping my hand steady I started to get frustrated a bit. bc its such a simple task and all of a sudden I can't even do that. It took me 2hrs to polish my nails! A simple coat 2 freakin hrs!!!! I couldn't even cry bc I can't produce tears and I wanted to cry so bad. I already had a bad day and I just felt defeated. There is that Damn word again...defeated! I hate feeling that and I'm working on over coming that feeling. Well its rainy and gloomy so mother nature hurts me more the next day! I mean I am flat out on my butt wore out. Flares left ans right body aches,swollen body,sore throat,puffy eyes and face..the whole shabang! Im so loopy that I sleep for 3hrs straight and dont really know what's going on type loopy. I felt drugged! My body was so heavy that I couldn't move. I couldn't see anything my vision just gave out! I was cranky and irritable thank goodness Aiden was not there. Everything annoyed me! I took 4 showers today to calm my body down and to try to wake myself up. I fell in the shower bruised my knee a bit probably something else too I will find out later when it shows up or hurts. The thought if a cane is becoming more and more likely I tell ya..I'm.beyond clumsy when I have a flare or get weak. Oh what a wk this has been for me..well actually month! I'm losing my mind I'm so forgetful I feel yet again lost! I'm just a being in this world standing still while everything moves so fast around me....

Losing my marbles,nose bleeds,and the shakes!

Today December 14th I woke up happy and feeling great! I put on a cute outfit and felt good about myself. The weather was going to be sunny 60s and nice..I woke up early to take meds and eat a great breakfast. Aiden woke up to tell me bye and feel better. Even said I looked pretty! I went to gas station and they had my favorite v8 fusion pomegranate berry drink back. I was golden! I head to treatment and get an amazing phone call from a friend saying she is going to start going to my dr too for her fybro..she said I encourage her and uplift her..made my morning even better to know I helped someone! I go in and it's a quiet morning not busy at all..I like! We do the usual how are ya and what's the pain tolerance today..my only complaint is heart papaltations and horrible rt hand shakes! It's getting worse! My hand even turns red and blue. My left hand shakes but not as bad it's annoying! Me typing is annoying! Then we get the treatment going she does my left arm instead of the rt this time somi don't bruise below and when she inserts the I've in ( this is gross) but it felt like my heart popped! It was weird like heartburn but strange. I turn on my Marvin Gaye,close my eyes, and go to my happy place (aidens smile) my heart calms down and the burning of the meds take place. I start itching and I start with the metal mouth again...thank goodness for my v8 drink! 30min come on let's get this over it! I start feeling tired..I ask is it going to rain bc my head and body hurt more than usual..yes actually it is ;( I sit for a moment after the infusion and just try to catch myself. I feel weak. I go home and to a happy home..aiden and bo running around Chris relaxing before work..my bubby's ;) all is well! I get lil man dressed so we can go have lunch with his aunt gg and I still feel weak but ok.maybe just hungry. I get her we enjoy soup and salad and time with aiden. I end up seeing an old friend turner and he says how great I look ;) good day still..so far. Then I go run errands for Chris and realize I'm getting loopy. I have my phone on me and I drive to his job and some how i lose my phone in my truck within 5min! After that all I know is I flared up, got bitchy, and didn't know where I was besides in a parking lot with aiden and Chris.. My mission was I lost my phone the rest I was lost! Completely confused, annoyed,lost,frustrated, and just hurting! My eyes swelled,my body hurt, my mind hurt, my marbles were lost! Chris felt useless bc I was heated and having a flare. Man, when I have a flare back the f off! I'm not myself! I'm a monster,a beast,a quick tempered annoyed bitch! I'm abrupt,rude,and fiesty. So he gives me his phone I case of an emergency I head home and go straight to sleep. Well...wait. Driving home i did something horrible which I have only done two times now...I yelled so hard at aiden and cussed him out! Yes I said I was a monster! I then pulled over prayed and collected what little mind I had and said I was sorry to him and that mommy is hurting and sick rt now and that I need him more than ever to just listen and be quiet. Well Gid gave me a miracle baby for sure...for a 2yr old he said sorry mommy your body hurts, I luh you, and ainen be good..I have to potty! Haha I said ok lets go home bud! Made home and he kissed me listened and went to take a nap with me and Bo! I woke up heart racing and a major nose bleed. Have I not had enough today?! I go clean the car out and what do you know the damn phone is in my door pocket thing! Ay yi yi gennifer! Ok so then I have to laugh bc today was a blurr! From 1-7pm I was in a blurr..oh wait the day isn't over! Sis and mom come over to take me to dinner and spend time with me..I eat aiden eats and behaves but I just feel horrible still. Cold,hot,achey,sore throat,eyes hurt,body hurts...come home starts raining explains the arthritis pains..let bo out, turn on shower,lock up the house,turn on batman for aiden,turn on pandora gospel station and zone out in a hot hot hot shower! My whole entire waist below is swollen! Thighs,knees,ankles,feet, and toes! My eyes are swollen,my face is puffy, my throat is swollen and sore! My hands are shaking my nose bleeds yet again and then there is aiden putting Vaseline all over his face and Bo's face! I ignore and just relax! Now I'm watching teen titans with them and about to take last of meds for the day and hit the sack! A long day indeed is finally over! Maybe a little pimterest will ease my mind...Tom is a new, glorious, and fulfilling day :) I think I will bake cookies and listen to some prince in the am ;) xo

Sit in a recliner,lean back, and lets shoot up...

Sounds exciting huh?! Haha.. well you can take my place any day crack head anyday ;) So I go to rheumotologist (Lupus and Sjogrens. Dr) every day in the am for approximately 2hrs. The infusion takes 1hr usually from start to finish. The medicine is only 30minutes going in me but the whole process of calming my Bp and heart rate down takes an hour usually in itself. My first cpl times I was nervous. I mean before getting sick I never had shots,needles,hospital,drs nothing! I only got tattoos ;) so for me to sit there with an iv in me was like "I am warrior hear me roar" I felt strong! Bc I did it..alone. that's another thing..I do a lot of this stuff alone (drs,hospitals,infusions,phone calls) bc I don't want to see ppls expressions,don't want to hear their worries,and oddly enough for a very emotional sensitive person..I don't want the "pity" feeling. I am strong and I want you all to be strong with me. So having someone there to just sit and be scared does NOTHING for us both! I'm not mean I'm just real. My Bp and heart rate doesn't need the next persons sorrows I can only deal with mine,aidens,and Chris's at the moment. Chris is the only person usually ( besides my sister Gina and God in my closet) that see me break down and all the way down. They are my light in the darkness from day one.. I married Chris and said until death..he should only have to carry my burdens. Our way of living not yours..it helps me stay calm actually. I post in a blog my feelings,I fb status it but to actually break down will be rare. Bc if I do I sort of feel like I gave up on God. He told me personally he has me and I'm not defeated! That was a struggle with in itself for months I "blamed" God and felt "defeated" beyond belief! Why me feeling and I'm doing everything "right" and my test are coming back horrible! I almost wanted to give up and but then I look at those hazel eyes of aidens and that smile he gives me and he now says " ma,u my est fran!" ( I'm his best friend) that's what keeps me going! So back to infusions... I sit in the recliners,relax,and watch tv and ppl watch. I'm nervous..everyone is not there for treatment so they stare back and I get TONS of stares ( I'm the youngest,sickest,and perkiest) they all ask me in a not threatning way do I just have RA ( rhuematoid arthritis) oh how I wish! They all are mainly late 30s and way older with RA only. Few have lupus or fybro. But its a handful. I on the other hand have a handful of stuff but the least to complain ;) Go me! A lot of them beg for meds and get mad when they say no you have an infection or your sick and we have to clear that up first. They talk about how they can't go on another wk like this or another minute! Then the nurses come to me ask me my info..how do you feel,what's the pain for the day,how's the kidneys,how's the blah and blah..the whole shabang and they just get quiet. They all start asking more questions say bless your heart your so young but have a smile on your face. Love your positive attitude blah blah...I changed their attitude by saying snd doing nothing...Power of God in me for sure! As the infusion goes on I watch my show Kelly and Michael,play on pinterest and listen to relaxing music..I try my best to stay calm and think happy thoughts.. by the middle of infusion my mouth tastes like metal so I stop drinking water and start on my berry smoothie since I can't have caffeine ( candy they provide for the metal mouth) and then like that my eyes get heavy,my face feels droopy,I feel loopy,I'm tired. Everyone notices and they just stare in disbelief I guess..from how happy to how quiet and dazed I can from in minutes. It's my life I'm used it..hey even Aiden is. He says mommy body hurts for a minute but her heart is happy! A freakin 2 yr old!!! Hes beyond amazing I tell ya! Helps to not sugar coat anything to them. I'm very honest with him about drs needles,hurting,being tired,and patients! He's very well behaved for my illness and for a 2yr old. He's compassionate,out spoken,and a realist ;) like his mommy When I leave the infusion I'm not totally out of it but I'm tired. I always try and dress decent when I go to..I want to feel good and not just wear pajamas all day that's lazy! I wear what I can and try to be presentable basically..I'm not all decked out in heels Haha never me! But being in the sun hurts me but it also gives me a little pep to my step so this amazing weather lately has me more active and happy! Usually after infusions i go home cuddle with the boys,make lunch,and relax for a bit before i start my day teaching lil man. Infusions have given me a new insight on my illness..I have realized finally I am SICK. I was in denial for sure. Im sicker than I believed to be bc I didn't want it to begin with. I feel a difference I feel weaker in my body but not my mind. I mean I have lupus fog like no other but I'm still capable to do a lot. The infusions are what I needed to kick my butt into gear for this new amazing year! That's all we can hope ans pray for right?! With God all is possible!!!Xo