sjogrins....(sho-grins)

So I may have another auto immune disease that is attacking my kidneys called sjogrins disease. It deals with the moisture of thebeyes and mouth. Well...about a cpl years ago rt before Aiden I started noticing I had dry mouth a lot. But after Aiden it got worst. Dry mouth leads to cavities which lead to just unhealthy teeth. I went to dentist after the kidney Dr suggested to get them checked out to make sure nothing else was happening. My teeth are losing the calcium and everything in them. How embarrassing ya know. I smile alot and I smile big! Everyone knows that so it sucks when my teeth chip or I break easily. The first break was when i was pregnant and i fell standing on the bathroom seat. Leave me alone we just moved in I have ocd/add type acts where I like to organize and rearrange everything and it so happened that I needed a clock Hung and bang I fell knocked the tooth out almost all rt before a friends wedding too!! I got it fixed though. The other time was eating a hard chicken tender and it cracked my tooth this was after Aiden was born..and lastly the one yesterday where I tried to open a bottle and idiot me used my teeth and it cracked the same spot that i got fixed a cpl months before. Sigh I'm a big ball of mess basically! I went and got my teeth fixed today and it didn't hurt but it wasn't fun. It's so difficult bc now I'm on a special toothpaste,two mouthwashes. One for dry mouth and one to make them stronger. It's all so crazy to know that from this auto immune disease my teeth are in danger and my eye sight isn't any better! I have to use those eye drops all the time or else I basically go blind. I barely can see and i wear eye glasses. It's ridiculous! It's like a weird hazy layer forms over my eyes and I just can't see its a blur! I laugh it off a lot with my teeth breaking and the blurry vision bc its happening and there is only so much I can do...but laugh and try to make light of the situation. My mouth is also having a chemical reaction like to the steroids, mouthwash,thyroid meds, and anything I eat or drink..my tongue feels burned and irritated alot which sucks bc I love to eat a lot now and its all uncomfortable. Waah waah waah Haha but this is by far the only thing that bugs me about this whole sjogrins crap. My mouth acting weird. I'm getting old..I can't see,my mouth hurts,my teeth are brittle,my knees hurt,I pee on myself,what else. Hahaha 28 ha more like 70 man. But I'm hanging in there..day by day, bill by bill, laughing and smiling the whole way through! thank God and Chris for insurance :)

"over it"

Sorry I haven't been writing as much. I have a lot to say and always say I should write about that..but then I get to my quiet time and would rather zone out than write honestly. But I made a vow to do keep ppl informed about my new life so you all can be more aware of the situations we go through. Lately I have been having a lot of good and bad days. One day its amazing beyond belief the next day its hell on wheels. The flares are diff lately since the steroids. My vision is getting worst and I use the eye drops like prescribed but everything is a blur and I can't even squint to save my life. My memory and concentration is whack now. I make plans and I just forget. I feel like I'm losing my mind. I need to.make a note and go buy a new organizer a good one so I don't lose. My joints are starting back to hurting also in my hands and wrist. My knees today were swollen and I feel just uggh...Im in a zoned out world. Im like a teen high for the first time..useless. I don't know why the steroids arent working. I plan on calling new Dr tom and getting an appointment. I will be at a month mark on the steroids in a wk so hopefully somethin is working. It better be..I don't like the way it makes me feel at times. I eat like a maniac now. I mean I can eat!!! I'm noticing the bloating in my stomach and face also. Guess that's why I'm working out a lot also to maintain it. I feel jittery,I feel strung out like I can't slow down and when i do I'm wore out. I'm a slave to this disease man! Haha. But overall I'm hanging In there. My honest thought lately is...I'm over it all..I'm over crying everyday,I'm over having flares,I'm over drs visits I'm over thinking about the future. I'm.trying to enjoy the good days as much as possible but man those bad days make me just say oh f it..

im lost...

Like stitch says off of Lilo and Stitch.... I feel lost. This past week I have never felt so defeated. I went to work and felt horrible had to leave early or not even show up and even cut my hours. It's like its starting to begin where I I just can't physically or mentally do a lot. Which makes me feel defeated. I feel lost, hurt,confused,abandoned,exhausted,and just over it all! I went to the gym to run after work one day and this is after I got my records from my Dr saying thay I am at stage 4chronic kidney failure. At that moment I was empty..i didn't understand what that meant. What is stage 4 and how many stages are there. What happens at stage 4 should I be feeling some type of way? Bc really I feel fine I am just exhausted and pee a lot not including my normal flares. I'm on the phone with one of besties, Autumn asking questions bc she is married to a nurse and also works at the hospital as a X-ray and ultrasound tech..basically they know more than I do so it helps. I'm livid bc I'm finding out about this through a sheet up paper and I'm nervous to what it all means. I go to the treadmill and turn it on and at my gym they have online and tv's on the treadmill so I was contemplating on looking up stages of CKD ( chronic kidney disease) I start running then on my Pandora to Gnarles Barkley radio and its some relaxing hip hop instrumental soothing good stuff..it zones me out even more than I already was about thinking about that D word..dialysis. I then get the nerve and search online. Yes there are only 5 stages and dialysis is the next stage and then transplant. So my heart races and I look up and I see a young guy running in front of me with a shirt that reads..." You are home don't worry" with a cross and sunset. I cry and I run harder and longer and realize I am not alone..I guess some would think home as dead, heaven,etc..I thought I'm home here with more life bc of my faith and believing in Him. So I ended up running 2miles and feeling golden! I cried, ran,and realized I am not alone:) my girlfriend Kathy works at my gym also and I went to her for a good cry and hug. It's amazing how at every turn literally every turn or every call,text email,fb,this blog..I have support. So how can I be down and LOST!!?? I have too much to live for right now for sure. So that brings me to why I decided to create a "cause" page and a charity event in September this year. I am going to.draw awareness to all the invisible illnesses out there and bring everyone that supports me closer to network and understand what people like myself go through on a day to day basis. I found a charity I want to donate to also for more research..I'm finding my light at the end of the tunnel through this bc I need to take the negative and make a positive! I can't feel lost forever and I can't let people not understand what Im going through. God gave me a voice and I will use it for the good of the ones who do not like to speak out. Bc we all know I don't mind ;)

fiesty is my middle name

So recently I have been dealing with stupid drs yet again! It's been 2 wks and I have not gotten my full biopsy test results back. Said he would call that Monday after Easter and its two weeks later. I call everyday and everyday that stupid secretary is like I will let him know...ugh. I also have been having side effects from steroids. My heart races fast and beats like its going to pump out of my chest but i also can't really breathe. My hands go numb sometimes. I have headaches and I still have flares! How anbouig that they say steroids help.. BS! but anyhow I call my Dr that dumb sloth of a secretary days she will.let the nurse know and they will get back to me. They NEVER do! Well this one particular day I was over it so to say. I went there chewed out the sloth and she had the nerve to sit there and talk about her child and Aiden. Hunny, I am not here to be your friend. My life is on the line and you guys won't return my calls or respond back with my results! Then next day Dr morris calls and says he tried calling I say yea one time and I called back in an hr and they said you were already gone. Ugh. Doesn't help that both of these days that I am talking to these idiots I was having horrible horrible flares! So feisty is really an understatement :) I'm already feisty with no flare so its like x10 when i have a flare and I'm dealing with idiots and my life on the line. So I go get my records bc I make an appt with another nephrologist to get a second opinion. They can't give me my records just yet bc he hasn't signed off on them! What type of crap is that?! They are mine!!!!! I just laugh and leave at this point. Bc I'm over it! I go to new Dr next day and basically he breaks down everything. Draws me pictures of my kidney tissue to explain the biopsy and why I'm on steroids. Bc usually if you have chronic kidney failure you don't take steroids but since I have two auto immune disorders the steroids should help it all. He reassured me that my Dr is doing what he his doing rt and that he will.get in contact with him to let him know that I am nervous and.need more details and communication. I will stay with my.Dr for the rest of the month trial on steroids and take the exams to see if it helps..if it doesn't then I will.start going to.new Dr for another theory. Oh joys of drs visits and the amount of money we pay them for this bull...atleast I feel better about what is going on with me and the next steps.

the villians have got me...

"Prednisone" my evil villain has got me.. So I am now on a one pill prednisone...first couple of days sucked butt...I felt jittery, nasueas,upset stomach,headaches,period delayed,ate a lot,bloated,throwing up..you name it I felt it. But then I felt no arthritis pain which was pretty different for me. Today..Saturday the 14th was the first day I felt really ALiVE. I mean beyond feeling just good..amazing..ridiculously amazing. I some up early..4am wide awake that is def a good and bad thing. I can't sleep but I feel good and rested. I feel wired. Im still up from.waking up this am at 4 and it is midnight my time. I feel great. My soul feels warm. I went to the gym with a friend went to lunch afterwards and felt great. Ran a mile which I haven done since I met Chris..running used go be our thing but after aiden or let's say after I got the man I stopped trying Haha. I went home cleaned the house full of energy then went to family dinner and ate alot. Then enjoyed a nice Saturday church service with my sister. It was just a great overall healthy day . Cons about meds..I'm up,jittery,bloated,hungry all the time,headaches Pros baby is getting back! I have always been a small girl with no shape but I'm getting something :) I have energy,I don't hurt,I have time to enjoy with Aiden playing,I'm feeling alive! No naps,no exhaustion all the time :) Woohoo!!!!!!!!! Start of something new my friends. the villain may have won but I'm only getting my energy back to kick some butt!!

i just did what...

I just peed in my pants a little..is that possible at 27yrs old. Hahahahaha I feel like an old lady sometimes bc I can't hold my pee and I always have to go. Which is one of the reasons we thought maybe diabetic at first. But I guess this kidney is no joke. I mean..eating a nice sushi dinner with Chris and Im running to the bathroom and I tinkle in my pants. Go ahead...laugh..laughter is amazing for the soul :) can someone buy me depends for mothers day??!!

the day before easter...

So, I know you all have been anxiously awaiting the results of my biopsy. I got them back the Saturday before Easter. I get a phone call from my nephrologist saying he is sorta shocked at the results. He only got a phone call from the pathologist so not a hard copy in front of him to really go over or send me. He says that I am negative for Lupus in my kidneys. Which Is good but I have another auto immune disorder in my kidneys called Sjogrins disease. Basically my moisture glands in my eyes and mouth are gone and some side effects are kidney disease and gland failure. They don't know for sure yet if this Is what I ultimately have but the symptoms I have with the blurry vision and dry mouth and feeling dehrydated all the time makes sense. I then ask out of confusion does this mean I have no lupus and does this mean no dialysis?!! He says no..you do still have lupus just hasn't affected your kidneys like we thought yet. But there could be a chance they could if we don't figure this out. Also, there still is a chance you could have to get dialysis we just can't rule out anything rt now bc we still don't know. Then he tells me bc I'm still confused and annoyed almost at my body and the lack of results I guess in my eyes it was not to the point you have this! He tells me that I have had kidney failure some time. My kidneys are heavily scarred showing to us that this has been for years. Which in anyone's mind who knows about kidney failure you think..oh shit what does this mean for me and how did I not know I was this sick...he says that I still have kidney function which is what we want but it is scarred badly and that.......super sad face....I have to try prednisone for a month to see if that may help. To me thats saying Genn-0 Devil-1....but then my competitive mind says ok..no problem one month I will give you one month and then we try things my way. The Dr agrees and says we will test in 4 wks to know if its helped you any which in his eyes it will..he thinks it will help with the arthritis,lupus,thyroid,and the kidney. So with that said we shall see.. My feelings..my deep,honest,gut feelings about this all... I'm speechless,scared for the first time,annoyed,and over it. I haven't even looked up the sjogrins disease bc I don't believe in it just yet or kats put it his way..I don't want to learn it just yet bc I just learned about lupus and what if I don't have lupus after all those positive tests and what if I don't have sjogrins and what if I have some weird not heard of disease so basically I don't want to learn anything new to learn I have something else new. I don't want to learn more about it to learn the symptoms are what I really have. I don't want to learn about it to learn that I could die or there is no cure. Im over being sick and Im not going to allow myself to live life in a bubble bc of it. I still have strength and life left in me so I'm living off that feeling not what drs are telling me. That...that is how I honestly feel.

what has 5 letters,can take you far,and noone can take it away?

Faith........ I personally live off of this more than I used to. Not since I got sick, since I got pregnant. I strongly feel that if you have faith in whatever you choose then it will get you far. Noone can take it away from you, you can achieve a lot if you just believe,and its rewarding when you give it all up and rely on faith and it proves to be a better way than doing it on your own. I have to rely on this to get me through the hard days,the pain,the stress,the emotional rollercoaster I'm on.. I have to rely on this to be strong for my family to know they shouldn't worry either. To be Aiden's teacher and teach him that his life depends on how he grabs it ans runs with it and that faith and trust in God will get him far helps me to build my trust stronger. I have a little man looking up to me. What makes your faith and trust stronger?

yay, two scars on my back now...:(

So I have pretty much caught you all up to present day now. On April 5th at 630am I went in for my second kidney biopsy. This time sadly I was not happy go lucky.. I was more a ball of emotions. I went in and just kept praying for an answer. I did the same thing as last time me and Chris went in checked in with the same ladies at front desk. We went to the same day operation and checked In with the same lovely ladies as before. They were shocked to see me back but also delighted bc of how happy and entertaining I was last time. We are at this point like family. They weigh me and I weigh 108lbs which is awesome bc I was 104 before. So that was probably the only good thing so far. They tell me that I am in the exact same room as last time. I don't know if that's a good thing or a bad. It's almost like I'm too familiar with this place that's not good but then to feel comfortable with these people and in "my room" sorta makes me feel like I have nothing to worry about. But anyways we do the waiting game...I watch my Fresh Prince re runs and know them all by heart..which sort of makes me realize I may have watched too much tv back then Haha. Chris is on the computer like last time. Mrs Opal comes and checks on me, takes my vitals,ask all the questions, and prays for me. I close my eyes for a bit and wake up to my name being called to take me up. I say my goodbye to Chris as he waits patiently for my return..I say my goodbye's to the ladies and they say are ya soon girl..like its nothing which helps. I get strolled on the bed as if I'm super weak and so ill..I could have just walked and probably would have helped my nerves of being driven slowly to my "pain" the torture room! I get up in the waiting room and watch some tv they had freakin detective stuff on about wives killing and young kids dying. I fell asleep and woke up dreaming about that mess. But the Dr comes, he's a young,handsome, Asian Dr who smiles and puts on his concerned face. Like when you are talking to a child that's not yours about being careful and why its important. It was like a soap opera episode and I am the dying lost god daughter of a rich wealthy family and they want me dead to get their half of the money and I have a Dr who's being concerned and feels I'm in danger. Ok sorry I babble..but he goes over the procedure again and tells me everything and how he is sorry I am back blah blah.. I pretty much could be a Dr for biopsy by now. But he's nice and I ask him do I have the same drs with me this time? He says yes and I for some odd reason start crying not from being scared of the operation..fear of what if I have to be back in a month bc they didn't get enough again. I don't mind going back if they did a test to see if meds helped but to get it done again bc they fail to get enough is wasting everyones time and money. He then tells me that he will see what he can do. We go back and there is that darn bed that I have to lay on and be super still on. There are the machines,the needles, the markers,the drs,the lab coats,the gloves,the stillness of a hospital room that scares many including me shitless..I just breathe and I look at the clock to keep time. It was 935am they mark me with the markers clean my back with alcohol and tell me to breathe and relax. They put on their gear and he says I'm about to give you the numbing medicine. I don't speak. He says breathe in, I do..he says now breathe out and hold..the stinging pain that soon went into my body made tears roll down my face but I was in silence. The stinging, burning, liquid going in me burned my heart that I was in this situation, burned my back,my side,my stomach, and my pelvic area. They hit a nerve and it stung. More tears, more prayer,more looking at the clock to just watch the hands tick. When he gets done with the pain meds I breathe hard and tears start rolling harder and harder. I feel helpless. I don't want to do this anymore. Then I remember the hard part is over. That was the pain now I shouldn't feel anything else...I should rt?! Well they start sticking he needles in and he moves it around and it just hurts and I feel the needle in me I say ouch..and I cry more. He wipes my tears away and tells me I'm doing great. I do the breathing in and out and hold over and over and I'm just clenching my fist and digging my nails in my hand to take pain away, to take the fear away, to just zone out. I look at the clock again its 10am. Are they done yet?! Then they cone in and introduce me to the man in charge of the operation who will be watching over the Asian Dr. Turns out the Asian Dr will complete the whole operation. He wants to be the one to blame if something happens good or bad. I liked that. I felt comfortable in his hands. He tells me are you ready bc we are. Just hang in there and we will get enough I promise. He says breathe in and out and hold shoots the gun and says good job they check that under the microscope and say its perfect. He says no I will take another..Breathe in breathe out hold and shoots again..they check and say Sr this too is another perfect sample. Are we done they ask him. He says Genn if you can handle it can we do it one more time. My faith in this man grew so much just from those simple words of caring and understanding I can't physically or mentally go through this again. I say go ahead I'm ready just shoot he gun now. I felt my faith grew again and my strength was coming back. I felt in control when I really wasn't. They went in for last one..breathe in breathe out and hold POW we got it and its another good one..the excitement of hearing I have three not one good sample and that there will be answers next week made more tears roll down..this time from pure happiness and release of tension. The nurse and Dr came and said I did amazing gave me a head rub as inlaid there exhausted and ready to get the needle out of my back. They pull it out and I felt released..set free..not tied down anymore. I look at the clock its 1045. That was quick,painless,emotional,and very intense. I'm ready to sleep and just go home. I get wheeled back to my room and Chris is waiting to say hi and goodbye he had to be at work. It sucked bc I needed him but had Meredith there to take place. Plus a childhood friends husband was my nurse after the operation. What better way to end this and have to take care of me than a best friends husband and a best friend :)

if you could be a fly on the wall at my job...

Ok so here I will explain how I work and how difficult and amusing it is sometimes. Yes I said amusing bc I make myself laugh quite a bit lately. So I work at a cafe and I open the place by myself. I get there at 5am and do some baking and setting up the shop. When I drive to work I can't really steer well bc my hands are locked up. They are just stuck in a position and won't get out. I usually shake my hands or rub them but honestly that hurts also. I make it to work I get in and I have to cook off bacon first. Well the darn bacon package is probably the most difficult take I have all day! Im laughing thinking about it. Bc I have been trying to defeat this problem. Thinking maybe of i just cut the bag..but hey I can barely hold scissors or a knife rt now. Or maybe I can have the closers open it and put it away..then I think that's just not sanitary. Then I think screw it Genn grin and bear it and open the Damn thing already. It takes me probably 5min to do this task this simple easy task that they even made an "easier open" sign on the package. I'm very competitive and man does that feel like a slap in the face. Then I have to bake and just carrying simple things is almost is as if I had buttered my hands before coming to work..its just hard when your hands ache and your elbows burn from pain. Then here's the fun part..the shift begins and usually I always get one flare. Oh when I get a flare its almost like who let queen Bitch in the building. Oh wait thats just Genn having a flare ;) I get very quiet I mean no talking just nodding and one word answers. At this point though my coworkers just know and step back but step in to help me as much as possible and and usually go in the back to wind down. Bc with the quietness I also get the blurry eyes where I can't really see then the loss of concentration. So that sucks when I'm trying to rush out a breakfast or a lunch and I'm basically dazed and confused. When I have a flare it makes me like I'm high. I don't know if any of you have ever been on a drug ;) but let me break it down to how it makes me personally feel..my eyes start hurting my heart starts racing my body gets jittery as if I just took a drug ( enter your choice of drug here..) then I feel tingling all in me and just out of body experience. My mind is saying ugh get me off this and get it out of my system but my body is saying Haha enjoy it bc I am.. then I get fatigue and thats where the feeling of. " coming down " off the drug hits..I feel loopy and drained. Crazy huh?! I just probably took some on a trippy ride but that's how i feel..out of body and can't control it. But I trying to be a strong woman I try my best to fight through the pain and just work to get it done. But I have found that working makes me forget and stay too busy to realize I hurt or that I'm exhausted. So work..work is good!!

God sent me some angels...

So you guys think that was inspiring and wow factor about Mr Larry Pratcher..well check this out. So I mentioned before that I quit my old job for a more laid back job. I was first working at a jewelry company I loved so much. It's was artsy and fun and I met my very best friend there, Meredith. But I quit to ease up the stress and go back to a cooking bit on a smaller scale. A small cafe where I work with three other people. It was a great relaxing change. Stress free and getting paid good. Who can beat that?! So I start working at this place and slowly everything starts making more sense. First off a little background, my last job I loved but the hours were 9-5 so I couldn't get much done therefore no drs appt or so I procrastinated :) It was semi stressful, I was around chemicals. nothing harmful but later we find out I'm sick and can't be around that stuff. Anyhow, I go work at this great place where my boss is laid back as all get out. Almost like a big brother to me..an annoying, mean older brother who throws slimy lettuce on my arms for fun :) but he offers to give me insurance but instead just adds money to my check since I want to stay on Chris insurance. Then he says if you need off you need off don't stress we are here to help you. You will be better! Then to top it off his dad prays over me!!!! I have another angel praying over me, guiding me to build my faith again. I mean how exciting to know the place you work for is all about healing,God,positivity,and pure bliss..I got Soo darn lucky and blessed for sure! God truly sends people our way to help us we just have to open our eyes and heart and accept the message and love. Man, I'm truly blessed with the amazing angels in my life. All the nurses are my angels bc have yet to have a mean one. All the drs, all the people who cheer me on, my son..oh dear my son is my main angel!! He was a preemie first off. I had difficulty during the pregnancy but the delivery was easy as can be. But with the lupus they suggest that I try not to have anymore due to the high chances of miscarriage and possibly triggering the lupus even more. That was just a suggestion for me I don't know about everyone else. But me and my family choose not anymore bc of my health risk and the future child or the chance of going through something dramatic. So he is my miracle baby for sure. He is by far the happiest little booger out there. When I'm hurt he knows. When I'm down and sad he knows and comforts me unconditionally . A 1 1/2 yr old knowing how to handle emotions. Just amazing :) truly God knew what I could handle in a child and sent him to me. God knew what I needed and could handle for a job and sent me this cafe. God knew I needed an amazing man to be by my side forever and unconditionally and sent me Chris. God knew I could handle this disease and I strongly feel he gave this to me to be a voice and advocate for my illness bc obviously its inspiring you all enough to read and enjoy. Thankful..wait I'm beyond thankful!!

Mr Larry Pratcher

So I told you all that March was an amazing month. Well along with feeling better, more energy, and a new f ound positive attitude...I met an amazing man. So I usually go visit Chris at his job, which is a restaurant. I go by when they are about to close and get a hug,kiss,and a goodnight. We are on opposite schedules which yeah, its hard but we deal and enjoy the times when we are with eachother. But I went in he was a little busy trying to get everyone out..I was about to leave but he asked if I would just hold on and he would walk me out. I said sure sat down at the pasta bar like usual and there was a man sitting there eating and drinking some wine alone. Very clean cut nice looking gentleman. I smiled and asked how he was enjoying his food like I normally do to customers. I then sat there waiting snd talking to the kitchen staff when one of the servers came..Rhonda and said Genn let me introduce you to Mr. Larry Pratcher. I said my hello and nice to me you. He joked around about marriage and who is the saver and sp ender in the family. He joked about who uses the toothpaste and gets a butter knife to scrape it out :) real laid back dude. So we joked talked laughed I stayed longer than expected. Then he talks about family and I ask for his personal advice on how would you discipline a child in certain situations. Then he talks about his son and mentions he is a pastor. I pause and say really what church! Rhonda knew he was a pastor Chris did not. He was a regular that always came in but Chris never knew. Right then I get teary eyed bc I just had my biopsy done two days ago and here I'm talking to a pastor and maybe he could pray for me. I have all you guys praying but I just thought how amazing if he could pray over me. We talk some more and he asks me..if you don't mind me asking why are all the servers asking if you are okay..I tell him I just had a kidney biopsy two days ago. He says what was the reason. I tell him my story about thyroid,the kidneys,the lupus,the eye problems the whole ordeal. He stops and says the devil is an evil sight. He then tells me how his wife was diagnosed with thyroid issues also. He tells me I can't claim it and I should just live life and pray. I say there and talked to this man for three hrs almost and felt so alive and reassured that I am going to be healed. He gave me his card we talked about his passions and how it led him here from Chicago. That God told him to do three things and he followed his word and is now happy and successful here in Memphis. He preaches at 201 poplar and a church in Whitehaven. I said I would love to come to his church and he told me the place and name. I don't believe he believed me :) we sat and talked and I told him that I didst expect to stay so long but I'm glad I did..he tells me that he came to clear his mind bc he just lost a really close friend who passed a couple days ago. So we helped eachother clear our minds for that small moment. Well I went home higher than ever. I couldn't stop smiling. His charisma and attitude he believed in me and my strength and doesn't even know me. As a cpl days went on I kept dreaming about a man that looked like Mr. Pratcher holding my hand and guiding me to happiness. I dreamt that he was telling me over and over Genn you are strong just believe. He was guiding me to this amazing bright light..not like I was dying but more of a at peace place. Every night from then on I kept dreaming of his voice that smooth deep male voice saying Genn you are strong don't give up just believe. So I was very determined to go to his church to are him again and tell him how much appreciated his influence on me. I looked up the name of the church and could not find the address or a number. I felt so defeated again and confused. My sister finally found it Sunday morning and we quickly got dressed and went. I took a leap and said I will go to an unfamiliar church and learn something. So we went and I forgot that he said he was going to be out of town for the funeral. It was a small church. Total of 14-20 ppl maybe. They were so warm and welcoming though I felt comfortable. They prayed and got up and talked about testimonies. A couple ppl got up said theirs and then a man got up and said his thank you to God and praised him but said he felt there was a strong presence in this church today. Then this one lady gets up and days her story of how she is positive for lupus. I stop breathing and tears roll down my face. They pray over her and I still keep quiet. The next lady gets up and days I sure feel there is someone here who needs the prayer more than anyone. I still stay in my seat quiet. Another older lady gets up and says I was diagnosed with lupus 10 years ago and look at me now. I'm stronger than ever she was around late 60s I want to say. I then began to ball my eyes out and my sis clutches my hand and says thank you for bringing her with me today and feels it was God sending me there to hear these strong women fight through it. The testimonies get done and they keep mentioning there is a song presence in here today I feel it..they ask if they are any guest..well of course we stood out like a fat elephant in a rats pile. We stood up and I stated I came bc I met Mr. Pratcher last Sunday and told him I would come. They were thankful that I did. Then my lovely outspoken very Christian sister says I just want to thank you all for allowing my sister to witness this. She too was diagnosed with lupus and kidney failure and had a failed kidney biopsy. Well I thought It was going to be a I will pray for ya type thing. Nooo they took me up front prayed over me and hugged and kissed me as if I was their family. That man said you are the one that brought this strong presence in and he is trying reach out to you. How crazy right?!! But how amazing?!!!! I will never forget Mr.Pratcher and my experience with him and his church. They lifted me even more than I possibly could have imagined.

no pain,no gain...NOT!!

You know that saying no pain, no gain..well mine is more like no pain and a lot of gain! The month of March was by far the best month I have had in a while. I rarely had any flares. There were one or two mild ones every other week. I don't know if I'm just getting used to them and just know how to cope better or if they just don't hurt as bad. Well this month I went two days with out any flare. Then it was a lot and then none and off and on. But majority of this month I felt alive and my old self again. It was an amazing feeling that most, including myself took for granted. I cherish the days that I feel great. I do everything that I possibly can and love every bit of it. One day I worked my usual 5-130pm got off, cleaned my car,took my son to park,went grocery shopping,came home and cooked dinner,cleaned house,and still felt good. Like I said before many do this everyday but for me its rare now. I usually always have to take a nap and rest my legs and mind. I usually don't cook anymore. Which who know me its quite funny bc I went to school for cooking.I was very proud of myself that day. I was high off life for sure. Well this little positivity that was put my way made me think back to my normal happy positive, go get them attitude. I prayed and prayed and thought to myself and God..I said God, I truly believe in everything happens for reasons. So I feel that I got sick at this time in my life because I and my husband and child could physically and mentally handle it. I feel that it is to teach me how to fight and how my son how to fight even when feeling defeated. To teach me to cherish every single person good or bad in my life bc they have a purpose in my life. To love everyone and tell them constantly how much I appreciate them. To teach Aiden to love unconditionally yourself and the ones in your life and not just a front. I feel it is also to bring me ans my husband, Chris closer and stronger together. The sickness has made me not stress as much about a lot of things. So having this epiphany made me also realize that I should not be. Inter towards the drs that didn't get enough tissue or the fact that I have lupus and kidney failure. I always have done this thing where I take the negative and make a positive. So I said Lord,I feel they didn't get enough tissue bc you wanted my body to heal a little bit longer and in a month when I go back in the test will either be negative for lupus or nothing serious at all. I understand now what you were doing and I give my body that time to heal. So as I "think" and "say" this I believe that I am healed and feeling good. I realized then that my positivity will get me far if I keep it up. But If I believe I'm sick and hurting then heck yeah I'm sick and hurting. So I have no pain bc I gained a better attitude and allowed myself to see that happiness can happen if I just allow it to..sick or not sick. The only pain I have are these medical bills :)

kryptonite..psshh you cant stop me

Ok so I left off where I found out I had to redo that horrible tissue testing again. Well let just say I cried Soo hard for some days like a baby getting his paci stripped away from them all because mommy read its time to :) yeah that hard and a lot through out random times of the day. At this stage of the lupus I felt my weakest. I felt my trust in God slip. I guess bc I prayed, YOU all prayed sooo much for me that in my mind "at that moment" I felt he let me and my family down. He gave me the wrong drs to work on me, I felt he wasted my happy day, my laughter with those drs, the positivity on these ppl just to say..eh we didn't get enough lets do it again. So like I always do I go in my closet when I feel defeated and I cry and cry and cry and pray and pray and pray for answers,strength,wisdom,and understanding,plus patience. I repeat that over and over to God and soon its to myself to let me understand that things happen in life that we cannot always explain at that very moment why and that have to trust in God that I can handle anything and I mean ANYTHING that is put in my path. So now I have puffy eyes and snot coming out ( lovely image huh) and I go take a shower and just meditate and relax. I have found this is the ONLY thing that gets me through my flares. Ok for those who don't know what I'm talking about when I say "flares" for me, its when my joints every single annoying joint starts hurting or swelling in my knees due from inflammation. Usually its starts with my eyes getting irritated and then blurry,then I get jittery and my heart starts racing fast, I then have achey feelings all over,the headaches come from the pressure of my eyes hurting,and lastly I feel like I can just fall out bc I am so weak feeling and fatigue. Sooo, when all this happens when I'm at home or at a house I usually go take a super hot..I mean knob all the way until it can't go nomore hot, and just stand there stretching each and every joint,muscle,everything. Sadly to say our water bill may be a teensy bit high due to this but hey, I'm not on meds! After this I put lotion on to basically massage out every joint possible but the tricky part is..my hands are my most sensitive body part that the arthritis targets the most..I mean there are time I just want to unbutton my pants and it takes FOREVER! So my solution to that is yoga pants and work out shorts. ( ppl usually ask if I just got done working out hehe sure I did, why else would I dress so comfy?!) but back to my routine, so after that I find a comfy spot on the couch get my large glass of water or whatever usually caffeine free mess but hey gotta do what i gotta do..a snack lately its been fruit and turn my dvr on and watch, don't make fun of me or judge me..nothing but reality drama filled stupid girl fight mess :) my guilty pleasure. Hey I don't eat chocolate Soo I can have something that every girl loves. I usually fall asleep instantly and wake up at 7-8 pm. So I sleep from 2-8pm and wake up eat dinner and go rt back to sleep by 10 usually. My mind body and soul is wore out! A flare knocks me down,drags me out,and spits on me. So when I write on fb saying only 1 flare that is an amazing day for me. Imagine getting them back to back..which I have actually at work. Everyone that is usually around me knows when I'm having one. I'm usually always hyper,smiling laughing,cracking a smart comment..but when I have a flare I.get really quiet and look like Im just wore out. I don't speak or I speak as little as possible bc I'm mentally trying to psych myself out of this "out of body experience" but it never works and never give up trying. One day I will.figure out what triggers my flares and how to control them when I'm out and about not in a shower. Some people I have talked to or heard about say meat causes their flares,spicy food,certain things. Well I have tested all that and I don't know if its another person in my body trying to make me go.crazy but everytime I feel just fine.." my minds playing tricks on me" ( who does that song Haha) but basically that is the jist of my crazy body that i will defeat soon! It's almost like a video game I'm superman and lupus is the bad guys and flares is the kryptonite that knocks me down. In my superhero voice...I will conquer you!!

come on, let me stick a needle in you for fun

Dummdummdummmmm...the day has arrived. The kidney biopsy! So I have never ever been in the hospital except for giving birth to Aiden and he was all natural. I don't take meds for anything not even a headache. So this is beyond scary for me. Picture this being laid out on a cat scan bed with three people over you saying don't move one bit, breathe when I say so,hold your breathe when I tell you to,and remember stay still while we poke a large needle in your organ...drum roll please....while you are wide awake!!!! I mean I may seem strong and all but really! Why can't you just give me a gas mask to knock me out..I really wont move then :) but luckily they are dealing with me on a really good day ( go figure, I feel amazing on a day that I'm in the hospital for 8hrs) but I was in a really happy,positive,no achey mood. So I held my breathe said my prayers and put my trust and faith in their hands. I kept praying the same prayer I prayed when I was giving birth.." God doesn't give me obstacles I cannot handle,he never leaves my side,pain never lasts forever,and Genn just breathe and know this soon will pass" I told the nurses ans drs to talk but not about what they are doing. I said talk about food, what they have to do after work,how the weather was..anything but what they were doing. Bc when they described it before taking me in..ugh it was horrible to imagine. In my drs voice who so happened to be so calm and adorable "so Genn I'm going to make some marks on you with a marker then we will take some scans and have you breathe in out and then hold it a cpl of times then I will come in and inject a numbing medicine that unfortunay burns and will probably be the most pain you feel today then I will insert needles until we have the right spot then I will go in with the needle and with a gun take out the tissue. It makes a really loud noise like a nail stapler so don't jump and be aware. You ready bc we are?" I mean can you imagine all that and on your body wide awake?!! I being a weirdo dug my nail into.my hand to make pain somewhere else so I could focus on that and not what they were doing. It helped but that numbing medicine was killer!!!! I didn't feel a thing after I was like so are yall gonna start now with the needles. They said Haha you have a huge needle In your back rt now. I was thrilled bc I couldn't feel anything well...until that darn "gun" the POW of it didn't startle me just the rushing pain from back through my side to my stomach freakin killed me!!!! The dr who took it which was a man that I will never forget (that's later on, on why) and the sweet Dr lady asks sir do you feel you got enough he says yes..he looks at in a microscope..she says are you sure. That kind of scares me but say I'm trusting you all. He says In his exact annoying dumb man voice ( can you tell I'm a little annoyed by him ) I believe I have gotten enough of this poor young girl don't you think Mrs Throneburg! I say I hope so. Well douchebag....YOU DIDN'T! I get a phone call two days later from my kidney Dr saying in an apologetic voice they didn't even get enough to semi test. He was supposed to check in the microscope and make sure before sending you back to recovery. I'm so sorry Genn but...you have to do it again. I cry he cries I yell and get mad he says he told them this next visit is on them. Unlike any normal person I don't heal fast so I can't just go get another biopsy I have to wait a month. A whole month to where my kidneys could keep failing or lupus spreads or anything. Oh I have a sour taste in my mouth for sure...

jug o' pee..why not

So its been almost three month since I found out about my illness so I have some making up to do on this blog :) To help understand what my life has gone through in such a small amount of time I will try and give the jist of how I am coping,my family is coping, and my every day life now. I hope this blog helps people understand more about what an auto immune disorder can do to people and to maybe give hope to the ones who do have this same or similar situation. Ok here I go.... So after we discovered that I have lupus after three test and that my thyroid was not in good condition either. I was then sent to a rheumotologist..Dr Arkin is my Dr. I go to him and they take my blood a lot of it..to be exact 6 freakin tubes of my precious blood. ( if you know me you know I hate shots, yeah yeah I have a lot of tattoos but needles going all the way in and don't get me started on the shaky handed nurses who take blood and miss) but they take a lot of blood, some pee,and make do joint exercises. Nothing major I made them laugh and tried to keep everyone happy. I feel that if I have to get poked and looked at all day why not make the people poking me happy and let them know I appreciate them by being a nice and happy patient. So they get results back and they pretty much match to my other test from my primary Dr. So next step is to get down to why I'm having kidney failure. Is it from the lupus or is it something else basically. The thyroid they gave me synthroid to take once every day. So I go back to Dr Arkin and he presents me with this huge orange jug..the size of a gallon of milk and tells me to pee in this for three days. Ok yes, I was laughing just like you probably are rt now. I said what! He says yes you need to only pee in this for three days and check this out...and keep in a fridge! Bahahaha I laugh thinking about it. Oh goodness..so I started on Friday afternoon and luckily I don't work Saturday or Sunday but Monday morning at work...you can only imagine! So basically I made myself eat and drink two glasses of water before I went to work funny part to this is work at 5 am! I peed before I left and said a prayer that I didn't have to pee til 1pm when I got off. Well....Haha I was fine until noon and realized I was holding it and that was just wrong in so many ways..first off I have kidney failure duh Genn secondly, they need this pee to figure out what's Wrong with me and lastly, well it was just dumb to. So I tell my boss he better not make fun of my jug o'pee or I'll beat him up! I go out to my car bc thankfully it is January and freezing outside so that was my "fridge" I go out get it and run to the bathroom and feel so much better. After work I take the jug o'pee and say to the nurses who wants a glass I got a jug :) they all laughed and said I was probably the most energetic person to come in there. We took more blood and they sent the urinalysis and blood work to get tested. That was step two of this "adventure" step three go to a kidney Dr. Thats where I met a laid back man named Dr Morris. He says with the urinalysis results it shows that my kidneys are only working at 23% he doesn't sugar coat it he doesnt hesitate he just tells me it is not what you are doing so don't think its the foods or what not. We will get this solved ( meaning all three drs working together..how amazing is that?!) He also says he has talked to he other drs and is fully aware that we want to do this meds free if possible. ( now how amazing is that?!!!!!) Note this..through out all this testing going to drs almost once or twice a wk for two months I have never cried..I was never scared so to say. I was a little eh feeling but never just like oh shit what's going to happen..until now. I cried in this man's arms. I asked so many questions and he answered them all honestly and realistically. That day is when it hit me that my life can be taken at any moment. Here's the scary part of my situation..moat ppl with kidney issues have either pains or blood in their pee or even swollen knees or ankles...me I have none of that I mean NOTHING! So with this being said, I could be gone at any moment. So now the next step is ultrasound to make sure there are two kidneys and they are good size and all also to check my ovaries. Then its to get X-ray on my chest then more blood taken more peeing more questions. Yeah, it got old real quick! After all that was done then it was the major step..that darn kidney biopsy!

reality..can suck sometimes

It makes me a little sad when I come to doctors and im the youngest person in the waiting room. To wrap my head around the fact that I have an illness that has symptoms that older ppl get..my thyroid,kidneys,arthritis...I'm in so much pain that it scares me to realize that this will be a frequent thing for me...being with the old crew.

first time i feel my heart stop..

So Dr Shiffman feels that we need to re test just in case and get other opinions before we go on to the next step of this Lupus mess.. I go to the Dr Jan 27th for more blood more pee testing. Jan 31 st...phone call at 4 pm from Dr Shiffman. "You are still positive for thyroid,kidney, and high protein...(long pause) you also are positive for lupus Mrs Throneburg..are you ok?" My first thought was ok and when do I go to doctor and what's next step. My heart though is stopping but beating outrageously fast I just nod and say ok ok thank u sir..I then hear Aiden in the hallway and tears start rolling down my face. My mind starts racing of I just lost my aunt to this disease I know there was a possibility of this but never imagined it thought it was just eating and anemic. I think I just want to see my baby grow old and see his kids have kids. I just want to always be his mommy to hold and go to. I want to grow old with chris..102& 104 yrs old rt?! I wipe my tears so Aiden doesn't see and I get off the phone with the Dr.. Im in a trance now..I'm so lost and confused but know I can fight this. I'm just disappointed that I have thyroid,kidney, and lupus! Why couldn't I just have a yeast infection Haha I laugh but I'm honest. Not a disease that you cannot treat ever! This is definitely the day my heart stopped...to think no more children frequent doctors visits tons of medicine tons of needles and blood drawn exhaustion scared to even get a cold to think it could harm me in the end. I just need keep m y faith :)

suck it up and go...

So I have been having major headaches,joint pains,fatigue,blurry vision,and just flat out not feeling good. Like any normal person we procrastinate on going to doctor bc A. We don't have insurance B. Scared to get results C. Thinks they can just sleep or nyquil it off :) well I have been saying I've been hurting or just tired for a while now but more since I had my son in 2010. I seriously felt my head hurt from either allergies,toothache,or work. I thought my joints hurt bc arthritis ran in my family or bc of my work. I thought I was always exhausted bc of work or my child Aiden. I thought my eyes hurt bc of my allergies, not wearing my glasses, staring at a computer screen, or yet again from work. I guess you can say I tried to ignore the signs my body kept sending me. My husband,Chris made me promise that in the new year I would go see a Dr to just get a check up since with insurance you get a free one for the year. Well, yet again I sorta pushed it out. But I felt like complete crap all the time. It wasn't until I quit my job making jewelry and got a simple cafe job and I actually had time to make an appt. Well, I was driving home one day and I blacked out..I count see I luckily didnt have Aiden with me but I only blacked out for a min or so which felt like forever. I was at a red light and ppl were honking. I saw a cop and he came to ask me what was wrong. I didn't know what was happening but all I know was at this point..everything was blurry as if I were going blind. Basically from that incident I made an appt with an amazing primary care Dr..Dr Shiffman immediately. My appt was Jan 25th 8am. I went in they took my vitals. In my head I thought am I diabetic,am I hypo-glycemic, or am I just not eating rt. I have been losing a lot of weight since birth of my son. Like every woman wishes I completely lost my baby weight plus some. I started out before pregnancy 120-125lbs on that drs visit I was 118lbs and sadly to say as of today I am 108lbs. I'm only 5'4 in height so I'm little as can be ( in my eyes) the wind could blow me down that's for sure. So the Dr says I'm definitely not diabetic but anemic which I knew. Told him lupus is in my family. He take more blood more pee and says he will get back to me in a week. Well it was the next day bc it was serious. He tells me..you have thyroid problems, you have anemia,you have some protein in your kidneys...wait for it...tells me to take a seat and deep breathe and bear with him..Genn my darling you are positive for Lupus..