Me stroke...not quite, but close call

November 30th...three doctors appointments, in laws coming in town, and a happy 2 1/2 yr old! Go to Kidney dr..results are great say I can wean off of meds woohoo what I prayed for. Then I go to lupus dr and notice Im hot, sweaty, dizzy,fatigue,and have a horrible horrible migraine. Not headeache migraine! They take my bp it's 168/140 or something bizarre heart rate is 112 they rush me to er..I cry bc I'm overwhelmed. I check myself in and they rush me back. They are scare Im going into shock and could have a stroke. They pump me with steroids and high bp meds it's all a blurr. I'm alone, I want to be alone avtuslly. Why would I want anyone else going through this pain and struggle also. I can breathe better being alone. Chris is working alone tonight so he can't come. His parents just made in town So they have aiden ( thank God for that one) my sis is on her way to give me soup and magazine since they say I have to stay overnight. I'm in pain so much pain like never before. On top of pain Im nervous of what if I had a stroke and passed and my last time with aiden was a quick goodbye. He's my world! I start praying over and over just thanking God for everything over and over! They do MRI and X-rays on me again and same thing I'm just really inflamed and need immediate medication through the veins. I can't sleep My heart is pounding out my chest feel like death is coming sadly. They noticed that even when I sleep its pounding and that is where the lovely "enlarged heart disease" comes into play! I laugh and say I just have a big heart ;) but man I feel different now that's for sure. I can't even walk down the street without feeling winded. I have noticed for a while now that when i lay down it hurts to breathe and all but thought it was the meds..my bp is also out of control so I'm on more meds with that. Well Chris gets off work and stays with me for some hours along with Raychell and James..we polish our nails to pass time while the boys talked it was good then they all left and yes even Chris so we could all rest! I was in high spirits. I slept good the meds worked, i got to go home! I did get horrible bruises from the shots in my stomach i still have them and it's almost Christmas! So next days I rest and go to lupus and primary dr to catch up with them. Turns out my lupus got really really out of control to the point of really hurting me in a bad crucial way..the bp hurting the kidneys,the kidneys hurting me,the heart hurting my breathing and living, the INFLAMATION hurting all joints,organs,and muscles. Weewh..I'm just hurt but still alive! Wellin the end result..im back on meds! Kidneys may be ok but the rest of me ain't! So I'm now on 6 pills and solumedroyl ( however you spell) infusion treatments daily for 30min until my lupus levels go down from 90 to below 20%.wish us luck!

Boobies,vagina...nooooooo!!!

Ok shit just got real...Haha Well I have been having horrible pain in my left breast. I mean to touch it by accident I felt like I was getting a titty twister. ( sorry I'm a little vulgar but hey it's life) all around sore, there are two lumps, the shoulder blade hurts, the middle of my chest hurts,my heart hurts..I go to my Gyno and she says since I have so many health issues I need to get a mammogram. Well I go and thank God it's no cancer bc cancer doesn't usually hurt but they give me an ultrasound and there is a type of infection in my breast basically from the medicine and there is major inflammation..hence the excruciating pain in my muscles and chest. Oh and going to a breast center Is pretty depressing in itself. I mean everyone in pink,everyone sad, everyone's twiddling their thumbs waiting on results..stressful and I commend any woman and family going through that situation.. Oh and while at Gyno we talked about dadaada..children! Ugh I hate that topic. I'm over it I've researched and weighed out all my options and I'm over it! We talked about freezing eggs ( soooo expensive) we talked about surrogate,we talked about me carrying and why I really shouldn't, we talked about adoption, we talked about it all..blah! Then she checked me and noticed yet again that same damn thing I have been hearing at every dr...INFLAMATION! Ok this is where i am about to get personal, deep, real..whatever you want to call it but like I said this is my life and it's reality of the beast I live with. To let you all inside of my life for a moment to understand the effects these illnesses have on people is only a teaser. You don't feel what I feel or go through the changes like I am you are just reading it and imagining it. Basically with kidney failure and auto immune diseases you get infections constantly..I get them In my mouth from sjogrens,my breast,my vagina,my eyes,my face, and my organs. For a WOMAN to get it in her private area and to feel uncomfortable down there due to her body attacking itself not from her mistakes SUCKS ASS! Sex..not the same..I don't produce moisture due to sjogrens. See sjogrens is a bitch in so many ways and I find it funny no one knows much about it! I get nose bleeds,my eyes dry up to where I have cracks in the lenses why I'm partially going blind, I have dry mouth,sore throats,cracked crack head lips,and dry itchy skin constantly. ( and that's just the sjogrens!) so I can't have kids, sex isn't the same, I have horrible eyes,dry itchy skin,losing hair,horrible kidneys,infected breast,inflamed entire body, cant eat or drink anything,and get fatigue whenever the lupus feels to act up...but guess what Im beyond thankful I can write this and tell you all my life story! There is the positive in this. The positive out of this is I have a child already a healthy nutty one, I have an amazing amazing husband who is supportive and understands that sex is not everything, I have family and friends who support me on my good and bad days, I have my breast still, I have hair still and it's a funky new one, I have eye sight, I have God...see I still HAVE so much even though these little things that people think are so important and they need need need..well some can't have or never had. I'm so grateful for this life lesson God had given me...opens my eyes more every day well my one good eye haha..come on laugh people and go enjoy some great sex with your partner for me! ;) don't take life so seriously is what I'm getting at!

Put on your purple chucks and donate!

It's The end of September and we ave finally made it to the big charity event for chronic illnesses. I'm nervous but ready for it to be over! I planned everything on my own and being sick and planning a huge event well it's overwhelming but worth it! Everything was donated! I mean everything..the food,the venue,the music,the silent auction pieces, and the flowers! The food came from none other than Carrabbas, the desserts came from yours truly..myself ;) music from Becky and her band and also dj Crumbz,flowers from Fluer de List in Germantown, and tons of paintings,jewelry,services,and more from so many of my friends businesses. I enjoyed helping them as they helped me! Me and Chris looked spiffy I had on my wedding dress which isn't fancy smanshy like most wedding dresses ( we eloped its knee length) along with my new short hair and purple chuck Taylors I was set..Chris in his blazer and purple shirt along with our purple and green ribbons I made everyone to wear we were set. All my closest of close friends showed up some that I expected didn't. Yes like an emotional baby I cried. I guess my feelings were hurt. I understand ppl are busy but when you RSVP and talk it up and then don't show it hurts. It's one night $10 amazing food and company for a great cause! But I had the most amazing ppl there to support me and we realized that's all that mattered. I needed up making more than my goal amount of $1000 and we doubled it! So overall it was successful for my first ever event that I did all on my own! I know now that i take the money before hand instead of at the door. Oh and I mentioned new short hair earlier...I forgot to mention I cut it off for two reasons...1.for children's illness month in october & 2. My hair is thinning badly and it's quite depressing being in the shower and pulling hair out and crying naked,alone,with handful of hair...yeah depressing! Haha so i chopped it off..well my hairstylist which is just my sister who so happens to only know how to manage my hair! It's like a halle berry short do I like it,everyone likes it,and it's super easy! So far it's been an ok fall..

Let's play catch up..one on one;)

Ok a lot has happened since June which was my last post. It is now sadly December and I am just now writing. Let's see June we left off with me not being able to have kids. I was hurt,confused,disgusted by others pregnancy,etc...now I'm at a better place with that. I enjoy having one and at the bad moments I thank God for my one child bc in reality I cannot handle more than what I have (He sure knows what we can handle!)ok July comes around I am still sick and Chris decides to take me on a surprise trip alone to six flags. I love love rides but man was this the ultimate test for my pain,fatigue,and tolerance to the heat and sun. I had fun and enjoyed the alone time we got to share but did get really annoyed and fatigue faster than ever before. But I pushed through and enjoyed every bit of it. He really spoiled me ;) It was an amazing get away from reality..just what we both needed. well I am feeling fatigue more.. noticed that I am just not myself. When you know your body you just know something is up. At this point with the drs my rheumatologist basically ignored me and doesn't really do much besides tests and more tests.( which equals more money and more money) But no medicine, no feedback..so makes me believe I am not that sick with lupus or sjogrens but why do i feel like pure shit and they say i am sick? So august comes around and work is getting difficult for me. We cut my hrs..I mean I was working 5 days to 3 to 2 day down to 2 measily hrs every other day. I would pass out, feel drained, feel like pure crap that I knew I was just hurting myself more. We filed for disability and just waiting for that whole process to go through. Which I hear is A horrible,long,drawn out task but I'm hopeful and hey I tons of proof that what I have is no joke. So now we are in September and October...I'm really fatigue but push through. I def feel my body take an over haul. I feel completely different than ever before but just thought its my kidneys or I'm overwhelmed. I am a full time stay at home mom and I got qualified for disability within in three months they said I would wait ( God is amazing if you believe and stay faithful) I changed my whole diet completely. My goal was to get my kidneys stabled. I know I have Chronic kidney failure and there is no cure for it and we can not reverse it. Duh?! But I do know I can at least savior what I do have. I already don't eat salt/ sodium or caffeine. I usually have caffeine every now and then well completely cut it out this time. Noticed I was sweating a lot and getting exhausted after a sip of a iced coffee latte. I also cut out my all time favorite dill pickle chips :( that was torture but man was it torture on my body! I would eat two darn chips and with a 2 glasses of water (to justify..don't judge me haha) and I would sweat,bloat up horribly,headaches,nausea,fatigue..the whole shabang! I felt like death for the next day over a small handful of chips! So while you enjoy your chips and drink of choice I will sit here drinking my water like its a large sweet tea from mcd's with a smile on my face and my carrots and ranch dip haha. I also cut out red meats and cut down on my meat intake. I eat only turkey,chicken,and seafood and TONS of veggies! I make soups a lot with salads. I cook for Chris and Aiden normally just no red meats unless it's pot roast their favorite and I just eat the veggies. I cut down on potatoes, I don't eat fried anything, and I don't west sweets unless it's my Swiss roll cakes! I only drink milk with medicine and cut down on dairy. A lot of these foods cause inflammation so to eliminate these as much as i possibly can helps so much and lessens the medicine intake..what I'm shooting for! So basically my diet SUCKS for a cook and baker! I miss cooking and baking whatever now it's is this healthy for me and I can't add salt or overload in seasons. Everything has salt in it! I now homemake everything! I'm starting on gluten free breads, I make my own salt free pickles, my own sauces,soups,dressings,aidens snacks, and soon my own chips..SACRIFICES! I also did my first charity eventin September for national Chronic awareness month ( next blog more details) So, I started noticing pains in other areas and go to the drs for all that ( next blog) and realize that I'm not letting this take over my whole body..I for a moment stopped going to my drs bc really going to the drs every 2 wks sucks butt and it was really depressing me. So now I was like ok by the new year I want to be healthy and happy! So I go make all my appointment my kidneys are horrible the creatinine levels are ridiculous and they are talking about diyalisis sooner than the possible 2-3 yrs. scared shitless eh?! So they put me on a lot of prednisone and get blood work constantly to see where I'm at my best in meds. Well the meds seemed to work some magic along with the numerous prayers I receive daily..my kidneys kick back down to a 1.8 from a 2.8 hey they still suck but for me and being they are CHRONIC I'm happy with that number. I did something I changed that number! Defeated not! So then I decided I'm gonna try a second opinion on lupus and sjogrens..so glad I did and i got an appointment the following wk which is rare especially for this dr! I was like God you really do got me! So I go to this dr the wait was long but they knew exactly what I had by looking at me and then did some test and showed and EXPLAINED I was crucially crucially sicker than I thought to believe! Yet again scared shitless! I was in shock. I knew yeah I have lupus symptoms and blah blah but showing me the results of X-rays,MRI's, and my blood levels and explaining each one! Basically my whole entire body head,eyes,all the way to my pinky toe is inflamed! The lupus level numbers are supposed to be BELOW 20% for an average lupus patient mine....wait for it..a freaking 90! that's why I hurt and pass out and what not! Next I go to my eye dr and dentis for sjogrens and they show I'm really sick and it's also taking a toll on my health with the eyes and mouth slso explains the constant nose bleeds I always have..I have no more moisture in these areas! I don't freaking cry anymore!!! Im almost like a little kid who is fake crying no tears what so ever! Guess..no need to cry is the story behind that one ;) ok I think I caught up enough..we are December now but I will write in other blogs about the new life of mine! So much has happened in 3 months! I hope this caught everyone up enough from June! Goodness I'm a slacker haha my apologies! This is very therapeutic for me so I do not need to stop especially if helps you all see what life is like inside a 28yr old warrior or for ones who suffer like me to know there are others in this "beautifully broken" world of ours..xo

Let me fly ....

Right now I feel like a bird caged with out a key..everyone comes to stare at me..they don't know how I feel inside, through my smile I cry. They don't know what they do to me keeping me from flying..she's so rare and beautiful why not just let her fly fly fly fly..spreading her wings and her song.