womans worst nightmare....

So lately I have been feeling good..better than in January and before the steroids. I don't have many flares or eye issues either. So I brought up how I would love to try to have another baby soon. Aiden is 2 trying to get potty trained and loves babies. Me and Chris always mentioned that we would try this summer and whenever Aiden was 2. Then I got sick and we then said once I feel good. Well...I'm all the above. I have read all about it and I have faith that I can have a child regardless of the miscarriage scare..I tell Chris hey, its either a cat or a baby. He says you are allergic to cats so....ding ding ding a baby it shall be hahaha. Well he tells me call the insurance,call your drs,and then we will see. So I call insurance company and all my drs visit would be paid for which is awesome since I would be a high risk pregnancy patient. Then I could save up for the delivery. I had Aiden naturally before and pray that the next would be the same. Then I call my one Dr bc I had fo pay a bill anyways. I tell him that we are debating on trying what is your input... " well....I really advice you not to not simply because of the lupus but bc of the kidney failure..there are many scares involved woth pregnancy and these diseases. You could lose the baby,you could become even more sick,the baby become sick,you both could be in danger,your whole pregnancy would be a big risk,your blood pressure could rise causing preeclampsia (spelling?), just more trauma to your body than what you really can handle. But then again you could have a great pregnancy if you take it easy and not work and relax bit its all a risk a big risk for your health and your baby's health" Then...I cry, I cry so hard, for so long, for days and days. I'm crying now as I write this. I cry when I hear about ppl having babies,I cry when I see babies,I cry when I see pregnant women,I cry when I hear someone say they are trying or want to try,I cry when someone says I can't wait to have a big family. I just cry and cry and cry. I feel that emptiness in my heart she. The drs told me I was sick,the same pain when I have lost someone,the same pain as if I didn't accomplish something...I feel defeated! Defeated by this sickness that won't go away. That is slowly taking my life away. Miracles do happen and I'm grateful for having aiden. But as a woman who wants a family of four..the mom,dad,and two kids then you feel my pain of being told no. The pain of saying its your body but no you shouldn't. I have met so many amazing women who.can not for some reason have kids and I always prayed for them a miracle and always said I never wish that on anyone not even my worst enemy. I feel their pain now. I see parents who abuse their children daily,who don't want to be around them and party all night and day,leave their kids with family or friends,and I say how can they be blessed with so many children and I can only have one?! Yea their is adoption but seeing what we can make is the most amazing feeling ever. I never wanted to be a mother until I met my husband. Now I want more bc I see how amazing my son is. I'm grateful for what I do have that's for sure. But that spot in my heart,mind,and soul will always hurt no matter what I guess its a woman thing or maybe just me. I'm trying to cope and understand. I pray daily for understanding and strength. One day at a time.

what next...

Ok its been a while since I have written anything and I apologize. I have basically been out of it I guess you can call it. First, I was in happy mode and felt so amazing after they took me off steroids. Then I took a turn down south and became super depressed. I don't know what came over me but everything makes me cry and my anxiety has gotten worst. The day after they took me off of steroids I noticed my heart rate was high,my chest was in pain like an elephant sitting on my chest,and horrible headaches. Went and got my blood pressure checked and it was sky rocket high. So high they checked me four times and had me stay to monitor me. Then the next day and the whole week it was high. Very frustrating that something else is added on to my list of health scares. Well I ended up buying an at home blood pressure monitor so now I check it all the time. Some days its high some days its lower never just rt though. Ever since I was taken off of steroids this is happening. I have also noticed that my anxiety has gotten worse. A million things run through my head,taking care of a now 2yr old,medical bills,working full time,and just marriage on top of it all. My plate is full that's for sure. I was so proactive about my illness before but a slump has come over me. I guess no steroids and the energy that it gave me I was rolling with it. But being off of them I'm wore out all the time! I just need someone to help me more.

slicing my finger off...check

Ok so I was at work..had a flare cut my finger while chopping Bacon. I literally cut down on my thumb..nail, finger tip, and all chop! I heard the nail like I just cut through a crispy slice if Bacon but it was actually my nail. Weird part....it didn't hurt,didn't scare me, didn't even really phase me bc I was in a flare. I just said oh shit..went to sink took my glove off and blood started gushing out nonstop. The tip of my finger was coming off and all I could was laugh bc I was disappointed in myself that I cut myself. I have only cut myself once while cooking and burned myself 3x so I took pride in that. It is still slowly but surely healing..yes I know i probably should have gotten stitches or something but I was in a trance. Didn't help that blood was being poured out of me and I'm anemic but I was so out of it. I went home early of course bc it was so tender that I couldn't do anything. It's been a week and its still split open a bit. Im a mess! Haha ;p

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.