A well deserving update for you all and more to come

Hello there all. I know it has been a great deal of time since I have posted. Shame on me. My plan was to do this blog often and always but I guess when you're in kidney failure the normal things like a working brain that doesn't hurt all the time or not puking after every treatment you take for granted. I wanted to get back on here and update all of you as to whats been going on in my life now as well as health and how I’m doing. Great to report that I did have a kidney transplant!!! My wonderful mother was my match. I did hemo dialysis through my tunnel catheter from April 2014-Nov2014 and had my surgery at Loma Linda medical Center on November 24, 2014. Just so happens that it was my Dad and my father in laws birthday. Thats right I am Married now too!! Got married in July. I had been planning for an October wedding when I went into failure but because I got sick we moved it up. I wanted to be able to share the wonderful unity and experience of marriage with the love of my life incase something were to happen to me before that October because I was in pretty rough shape. Dialysis for me was terrible. I feel so sad for anyone who has to and has had to experience this in their life or will go on to have to experience it. At first I thought it was a cake walk because I had so much fluid to lose initially from the hospital, but after a month or three when your body is suppose to adjust mine just never did. My gains between sessions (weight between days) which I went 3 times a week, Monday, Wednesday and Friday for 3 hours was never very much. We tried many sessions of just cleaning the blood (just rinsing with the solution and filtering the toxins than removing fluid) because whether we pulled 1 or 3 bags of fluid, I was always so ill and barfing. Just happened to turn out that my body didn’t like the bath (solution of chemicals used to clean the blood along with the filter) and I have no control over if I wanna do it or not because my life depended on it, so for me it was a living hell. Treatment days were bad, non treatment days were bad. I had everlasting headaches and I craved, cried, screamed and prayed for normalcy in my life if even just for a few minutes even seconds to please get a break. The times I wasn’t sick from treatment (which was hardly ever) I was also dealing with my flare ups of fibromyalgia (an autoimmune disease I had developed from the last 13 years of being in kidney failure and it putting extreme stress on my body, more than it can handle so it finally "broke"). After transplant I still deal with the fibro on an almost daily basis. At first it wasn’t too bad because transplant meds have the high doses of steroids at first and it was keeping it at bay, but as I go down on my pill levels it seems to become more frequent, more intense and its absolutely debilitating. I’m working with doctors now to try to find a more permanent solution to helping with the pain . Ii is just a constant flaming  on fire feeling of bone on bone grinding against itself from my shoulder to my finger tips and my knees to my toes. The last year we had been using fentanyl patches to try to control it with some other opiates for break through, but I’m trying really hard to get myself off all opiate medicine for long term. I was thinking of posting a video for all of you soon, kinda giving you an updated POST TRANSPLANT LIFE STORY, as well as putting together and releasing the footage which I shot from transplant with pictures and some videos that I took with family. This whole journey for me has been such a long one and I’m making progress slowly but surely. Its all baby steps in this world and I’m the type of person who wants to take gazelle leaps so it has been a very difficult learning experience to say the least. I am so happy to get a second chance at life. I get to spend more time loving my family/friends and my somewhat “new” husband and our dog. I got a wonderful new camera for my bday/ Christmas (which I also made it to, success!!! We didn't think i was going to, or at least I didn't think I was going to make it to see another year, I’m being serious when I say I was circling the drain people.) I cant wait to share more of my journey and life and wonderful adventures with all of you. Happy new year too I hope 2015 is finding everyone well and you are getting settled in! I’ve also made the decision that I’m going to be posting more than just my sick, sad, sob, stories on here since my blog's name is... in SICKNESS and in HEALTH, I want to share my good experiences too and give you an inside view on just my life in general: Random daily things that me and my family are doing and experiencing at the time. Sometimes it may be different since I am an organ recipant but also you will see I'm just a crazy regular young adult still navagating my way through life with a much more crazier man (since he willingly chose to marry me....twice, I might add!) who decided to keep me around for good. Oh and our baby furchild izzy dog. Again, if there's any first time readers I am also here for anyone going through this scary and sick experience! Please don’t ever feel shy to reach out, or ask questions. I am an open book and the reason why I started this was because I wanted to raise awareness and give everyone an inside look on what its really like being CHRONICALLY ILL and having a potentially life threatening disease that it out of your control. I want to continue to advocate for this cause whether or not Im on dialysis or feeling better. It's all apart of my life journey and you don't have to do this feeling alone! Look for the video soon, I will have to get it ready for you guys ;) , edit it all together so give me a little bit of time a week at most because I am still recovering from an injury of falling down my stairscase the other day and I did retear/repull my operation sight area tissue/right oblique. (which I had already pulled last month so it was barely getting better) I’m now set back 2 extra months in healing time. These crazy immune suppressants really change your body as far as not just weakening your ability to fight off sickness and diseases, but it also slows down all healing to your body substantially! Instead of bouncing back in a week like a "normal" person or how I am use to from growing up, it's taking many many slow slow slowwwww days and what will continue to be slow months before I will be back to where I can do everyday normal people stuff instead of sit on my couch watching netflix or day time television for hours on end whilst having hot sweats and wondering what the hell I'm doing with my life and how much longer do I have to wait to properly begin this life I fought so hard to keep and know each day is more valuable than the next. At the end of the day it's still A LOT BETTER THAN DIALYSIS!! Never again, I pray! I am so thankful for all of you for following me through this crazy long journey crazy that by the end of this it will be going on 3 years of being sick and healing and two years of you wonderful people following my story.  I’m so thankful for my family and friends who have supported me through this! Thank you to my wonderful strong enduring husband, a big fuck you to death for knocking on my door constantly trying to take me away from such a beautiful life I have here on earth and another Giantic THANK YOU to God, for not letting it take me. 

XOXO

Tashara

Updates... Me adjusting to the transition of dialysis and my life at end stage renal failure

Hello everyone, 

Its great to start to feeling back to myself. I realized I hadn't updated by blog since October and I was in the process of editing a video for you guys on my latest updates so far and ended up taking a turn for the worst in my health and not getting it out there. I’m about a week fresh out of the hospital so I ask everyone to please bare with me in the post if their are any spelling or grammatical errors or I don’t make sense, I am still adjusting to all the new life changes and rehabilitating myself from my hospital stay and life changing event. So here is a little update. Last time I wrote I spoke of my gallbladder surgery and hospital stay that was successful and I ended up going home and recovering fine even tho I went into the hospital for other reasons than that mostly being my kidney, not feeling well the edema happening again and also for constant radiating body aches. The follow month to the exact date so November 4th I had another surgery removing what they thought was one but turned out to actually be 3 big tumors from my breast to test for cancer, they came back benign thankfully and I made a full recovery from that surgery as well. Since then like I said I went to the hospital for completely different reasons then what they treated me for. From November till now I have had constant body aches so that I’m always in pain and have been on pain meds every day or every other day for 6 months and was still continue to bloat and have an overall unwell feeling. I went to a rheumatologist and they also diagnosed my with fibromyalgia after running a complete lupus and autoimmune disease panel on me coming back with two false positives. The fibro happened because of the constant stress on my body for the13 years with my kidney disease and I was living everyday in excoriating pain during the flare ups. After being sick for 13 years I know my body and I know when I’m doing well and when something fishy is starting to happen. I kept up with my nephrology appointments and in November my function was 22%. In order to be on referred to transplant for my kidney disease you have to have two lab kidney function tests under 20% function so I was still too high. We waited about 4 months because of shoddy referral work of someone messing up my paper work and I was finally seen again in March which I was very unhappy of missing 3 months worth of nephrologist (kidney doctor) appointments as we were monitoring my function closely to try to transplant without dialysis. In March my kidney function had dropped down to 18%. This was bad but good news as we could record this down for transplant. My doctor told me to come back in two weeks and we would record our last one to get me referred over to Loma Linda transplant center. My function seemed to be low but holding in their strong he estimated maybe a transplant by December if we found a match right away and if my function held up (I was losing about 1% a month), completely skipping the step of dialysis. When I went to the doctors that next apt my function had then dropped to 16% and I realized the harsh reality that it went from dropping 1% a month to now 1% a week and that by 6 weeks I would probably start dialysis. For those of you that don’t know you start dialysis at about 11% kidney function. So we got referred to transplant I made my orientation and testing date for June 12th which was the earliest available appointment and was crossing my fingers and saying my prayers that my function would hold out for as long as possible maybe even go back to dropping 1% a month. That whole week I wasn’t feeling myself and left my fiance house for doctors apts. When I went to my primary doctors my blood pressure was 190/130 normal is 120/80 so it was extremely high. They sent me to go and get labs done which my nephrologist was angry they let me go at all when I called to update him on the status of my health as my nephrologist is in Loma Linda and my primary doctor in Rancho Cucamonga. As I was going for my labs I was just feeling completely out of if and faint. I remember going to get my labs but they were closed for lunch and trying to swing the big door to open took all of my strength that I nearly passed out. I knew at the time something was not right and I needed to go to the Emergency room. We rushed me over to the ER where they pumped me with fluids beside my cries for them not to because I knew my body could not handle the excess fluid intake as I was already having bad edema that wouldn’t go away on its own. The next thing I remember because I was feeling so bad with vomiting and just out of it, was being in twilight with my head and neck on an operating table awake but not feeling pain getting an emergency catheter stuck in my neck to perform emergency dialysis on me. The first time I did dialysis I was petrified in fear. I think it was the most still I have ever been in my whole life. I couldn’t look at my neck or down at the tubes of blood and sat like a statue as my family and fiance watched with tears rolling down my face. At that point it was the hardest thing I have ever had to endure. The first two sessions they cleaned by blood without any fluid take to get me use to the 4 hours of laying there. The point of the dialysis machine for those of you that don’t know is to clean your blood. Your kidney is your filtration unit; what it does for you is filter your food and liquids and other ingestibles that are processed and broken down in the kidney and out puts it as urine. Thankfully I still have enough function to urinate on my own but am now down to 6% function out of 100%. My body however could not get rid of the excess fluid on my own. I went in prehospital weight about 110 lbs and gained 24 lbs in fluid retention alone. So my last dialysis treatment I had 4 in the hospital with a week long stay they pulled fluid from me for the first time about 2.0kg which if you think of the saline bags of fluid they give you at the hospital thats the amount they are pulling so 2 of those. I was then released from the hospital on no rest I hadn’t slept and was swollen beyond recognition. The edema was so bad in my face that it had offset my whole jaw and I had to take a muscle relaxer to ease the twitch in my jaw and was drooling all over myself and not able to talk. I felt like I had the intelligence of a third grader, and was also unable to write because I was so swollen. The very next day I started outpatient dialysis I am now set up for every Monday, Wednesday, Friday. I go in and sit for 3 1/2 hours while they pull fluid from me till they get me back to my dry weight. For those of you that have this disease and are worried about the feelings of dialysis for me the first week did not hurt. I had so much fluid gain and was so out of it that they were pulling 2.5 every time. The first outpatient I felt my jaw snap back into place and by the second my face started to look like me again. I am now a week done with out patient and I’m almost at my dry weight (pre hospital weight without the fluids) which is where they want to get you. The first 3 days getting home from the hospital I did not sleep. I was in fact a basket case. I had reached delirium and the doctors accidentally dropped my blood pressure to low. That third day was the hardest that I had to endure. I went from living with my fiance and being a normal young woman to having my whole world turned upside down and moving back in with my parents and supervised by my wonderful grandmother who has taken the time to really help me in this stage because I need the extra help until my catheter is healed and I’m feeling back to normal. My fiance works full time with maybe two weekends off a month and lives about an hour and a half away with our dog who I hadn’t seen in a month now and for me emotionally the adjustment of not having them everyday was weighing heavy on me. I cried basically every day for a week in fact there’s only been about the past 2 days that I haven’t broken down from one thing or another. So back to what I was saying that 3rd day was the hardest they dropped my blood pressure and I had to go to emergency care and they gave me something for sleep. I told my parents that if I didn't sleep that night they would have to have me readmitted to the hospital and seriously think about putting me to sleep because I knew I had reached my breaking point mentally. The sleeping pill didn't knock me out. Luckily it cleared my head enough for silence and for me to make my own good thoughts instead of negative ones and I got 4 hours of sleep that night, which to a lot of people might seem like nothing but when you are running on 0 its life changing. I woke up with a clear head and so thankful even tho my current circumstances because no matter how bad they are they are better than the alternative of death. From that night on I continued to get sleep on my own without any medication and continued with my dialysis session and got myself up and walking and out of the house. It’s been about a week and I am finally feeling somewhat myself again. I still have bad days and good and like I said only 2 days of not crying. Its going to be an adjustment but hopefully we will get me back to me and I will then start the journey for my transplant. Today I had my week check up following the visit when they dropped my blood pressure too low. I’m 118 lb. my blood pressure was perfect and they cleared me to wear pull over shirts which was nice because I’ve been living in button up PJS. As far as dialysis goes for those of you who have this disease and are reading or know someone going through it or for those of my friends and family that would like to know it is hard. Afterwards you have the worst head ache, are so dizzy and drained you feel like you could sleep for 100 years and it takes some getting use too. The first sessions were scary I couldn't get myself to look down at the tubes of blood or look at my catheter in the mirror or on me, it was too much too fast and I needed to take my time to process everything. Now that I’m a week in, I can look at my catheter in the mirror I can touch it I can look at the tubes of blood and touch them during dialysis and it isn’t too scary for me anymore, whats more scary is the unknown of what is next for me. This disease is an incurable disease and the only thing that will save me and give me a chance at a somewhat normal life now is if someone donates a kidney and I have a transplant. Even then I will have to go through that surgery and anti-rejection medicine regimen and I realized I will be on a handful of pills for forever if I’m lucky. Its very hard to accept and take in that this is now my life and will be for the rest of my life. I guess being young with this disease I coped by keeping myself a little in denial, I never thought I would end up here and nothing can mentally prepare you for the change and the adjustment you must make in your life to survive. I’m taking baby steps and putting my faith in God that this is all for a purpose what that is I’m not sure but I’m hoping he will keep me safe on this journey he’s embarked me on. Now that I’ve removed most of the fluid we are starting to suck less from me because its a give and take of fluids a balance to filter my body. My body does in 3 1/2 hours what yours does in 24 so you can imagine the stress dialysis days puts on me. I’ve had nothing but good experiences since I started beside yesterday in the last two minutes. Since we are getting close to my dry weight they are taking less fluid this time 1.5kg and I thought this was going to be a breeze only to have the machine feel like it was slurping blood from my heart like someone was sucking on a straw is the best way to describe it but they lowered the pull and it went away and then the last 2 minutes I felt like a 500 lb. man was sitting on me and it became very hard to breathe. When anything like this happens you are suppose to let a technician know right away there is more than one on the floor for outpatient and I did. I then needed oxygen and to stay later because I started getting little flutters of cramping in my chest, which they say you will in your hands legs chest, head aches and as we get closer to my regular weight because its a constant take and give I will feel more cramping until we find exactly where I need to be as far as taking every time I come in to maintain my weight and weight gain because you do gain weight which my body now can’t lose on its own so it is in turned sucked out at dialysis. I just wanted to say thank you to everyone for all the prayers and out reach that you have done for me in this time it doesn’t go unnoticed or unappreciated. If you reached out while I was in the hospital and I haven't or hadn’t gotten back to you I apologize I’m just now starting to come back into the social outlets of the world and use my phone again and feel like myself so hopefully I will only continue to get better. For those of you wondering about the emergency catheter in my neck it is connect to the vein and artery directly in my heart. When I go to dialysis one tube pulls the blood and it goes through a fake kidney or dialyzer and cleans it and then returns it via the other line. I’ve decided that my blogging is going to be a healthy outlet for me so for those of you who have been following my sickness, are just starting to read or what to keep following me I’m going to be blogging the good the bad and the ugly of this SILENT ILLNESS. My disease isn’t silent anymore, I’m officially handicapped and in end stage renal failure and making the best of a bad situation. To end on a good note and not a sick one some good things that happened to me while I hadn’t updated is I got engaged in November to the most amazing man I could have ever hoped to meet. He has stuck by my side through this whole experience and isn’t going anywhere. I cannot stress how lucky I am to have someone so caring and selfless, loving and supportive in this time that would stay with someone going through this kid of sickness and disease. It is more than a lot to handle and I am beyond blessed to have him in my corner to keep me calm, strong, motivated and pushing on. I also got a fur child before I was sick, who I now miss who heartedly everyday and hope within a month I can get back to where I once was and only be away from them on my dialysis days. We got her at 8 weeks and she is now almost 5 months old, a sassy little beagle baby that takes after her mother in every bad way possible. I was planning for an October wedding but due to the circumstances the big celebration will be on hold till I get better (positive thinking). And so far thats about it on this journey that I have been on. So that’s what I have been doing the past 6 months trying to fight for my life and adjusting to all the changes, I’m still me but I really see what life is all about. It puts into perspective the things that we worry about on a daily basis are so unimportant if you have your health, and the people you love. I harbor no more hate in my heart and forgive people for their wrong doings to me even without apologizes. It has taught me patience and humbled me in every way and I just hope that at the end of the day everyone realizes we are all the same, we are all human. Every one goes through their own troubles trials and tribulations, we all make mistakes on a daily basis but I think that if we all start having more compassion for others we will ultimately live much happier lives and really appreciate what we have instead of wanting more and will also be able to be open and relate more to strangers and new people. If you took the time to read this thank you so much! You guys are the best support system and I am so blessed to be able to share my story with people that actually care. Until my next update, Thanks for stopping by

XOXO

Tashara

 

Emergency dialysis in hospital

What I looked like when I left the hospital & first out patient

Starting to get better and my almost healed catheter

Me now a week after outpatient dialysis & hospital stay

My wonderful Fiance 

Our lovely furchild Izzy the beagle

From the Emergency room and back

(Mom, Me and Dad post-op)

(Family and I being silly day after surgery)

Hello everyone, 

I know its been awhile since I updated, it has been a crazy ride for me these past weeks.  So lets get started! While waiting for my doctors appointment at Loma Linda which is tomorrow finally, I ended up being admitting to the hospital. My stay there was absolutely terrible, worst I’ve ever had and I’ve had my fair share, about 3 times a year since I was 12. I went in for pain in my flank which is my kidney also for; body pain, bruising, loss of appetite, and vomiting(All normal to renal failure). While I was there they did a set of ultrasounds which I found funny because I had done them the Sunday before and they were not able to access them, so I did them over. They noticed my gallbladder was full of stones which the tech had mentioned before. They decided to go ahead and prep me for surgery and take it out. So now I’m gallbladderless. Still recovering now. The surgery went well and I was release from the hospital about a day later. I was so happy and thankful to finally be home, unfortunately my excitement was a little short lived. The next night I started vomiting violently and didn't stop. I could tell something wasn't right and needed to be rush to ER immediately. When I got there I was losing all body functions and feeling like I was dying. I was catheterized because I couldn’t use the bathroom by myself. My body was failing me I couldn’t even walk. Luckily they pumped me with medicine and fluids and I stabilized. It was by far the scariest thing I have been through to date. I was later released that night. They have no idea what caused it and I had elevated liver levels but that can also just be from the surgery, so I will be tested on that again in a week just to make sure. Since then I’ve been at home trying to recuperate and heal. Luckily my grandma is able to come over and keep an eye on me so I don’t die on anyone. I haven’t been taking any pain meds, as I am scared to put anything else in my body now that I am feeling “normal” so everyday is different for me on how I’m feeling. Just trying to take it one day at a time. Tomorrow I finally have my doctors appointment at Loma Lina with the nephrologist (kidney doctor) because I’m still in stage 4 renal failure, my function is about 30% right now so I’m anxious to find out what is next. I’m pretty nervous and emotional because I think that for the most part in order to deal with how sick I am I’ve kinda kept myself in some kind of denial and now I can’t really do that. Everyone has a different way of cooping with things, and I suppose that was mine. Fingers crossed that I don’t have a break down, which I’m terrified of happening. Also I got a call from nephcure foundation where I submitted my story. They are basically the main nonprofit kidney disease awareness group trying to help find a cure because for my disease there isn’t one. I’m hoping that my story will appear on the website soon and I will keep you guys updated. They also set me the sweetest get well soon card that everyone in the office signed and it was so sweet! I haven’t been on the computer much lately or social media. I’m sure I will once I start feeling better but until then I’m trying to take it easy and relax. I just wanted to give everyone an update on whats been happening like I always promised I would. I have more appointments to go to this month and I will update again when I have more information. Thank you all again for the love and support through this journey in my life. Remember life is short, so love the people you care about while you still can because you never know when they can be taken from you or you from them. Out of the last couple weeks what I have taken from everything is that I just want to spend my days loving the people that love me and cherishing the days when my health is good.

(My love holding my hand and staying by my side)

(Card I received in the mail from Nephcure Foundation) 

Xoxo

Tashara

                                                                                     

                                                Picture from after surgery

Guess what guys... I'm still alive (Update #2)

 Good morning everyone! First, I just wanted to take a second to say thank you to everyone who actually took the time to read my blog(about a thousand views) which was amazing to me. I got so much positive feed back and overwhelming love and support! It feels so great to have so many wonderful people care about me even when everyone has their own life going on. Pictured below is a diagram of what a "normal" kidney vs my disease looks like since I've been getting a lot of questions. And I only have ONE (most of you have two, unless you're like me) mine is termed a "horse shoe kidney" but not all of them look like actual horse shoes for clarification.

So as I said before I had Ultrasounds done yesterday, Sunday Sept. 29th, but I will not know the results of those for about 3 business days. I did take my mom with me to the appointment because my family has decided I shouldn’t be going to these appointments alone... I guess it’s “A lot of news to tell a young woman alone”. I was thankful and lucky enough to have my mother come along, so big shout out to Angie, you’re the best. I did find out that instead of having 3 gallstones, I have tons of them now, like my whole gallbladder is filled! The tech thought it was weird that I had so many without any pain(I’ve had gallstones for awhile but if they don’t hurt you they wont remove them, you can live a perfectly healthy life with them in there). Also the tech had a little trouble finding my kidney(that thing hates everyone, which is ridiculous because it's coddled if you ask me) but she did find it and it looks, well, anything but ordinary. Unfortunately I wasn't able to get a picture of it yet, but it looked like a shriveled little sack with a gimpy leg(what would have been my other kidney if it spilt properly in the womb). Not sure if it has always looked like this because I was too young to really care what was going on with me when they did the first one. I do have a disc of it from back in the day that I never looked at, because well, I have a Mac and it only works on PCs so how inconvenient, shout out to Steve Jobs(R.I.P). I will try to show you guys what they found if I am able to pick up those X-rays or get a disk that works on my computer. However, I was able to pick up the film earlier this week of the ultrasound that I had done on the tumor that was in my breast that I told you they had found (pictured below)

It’s the black mass with the measurement going through the middle of it in the top one so you know what you're looking at in both. I joked with my family and said it looks like I’m trying to smuggle a yam in my tata and that I was lucky for not getting stopped by airport security during their X-ray checks when I went on vacation this summer. “Uh excuse me miss, you are going to have to come with us, seems to be some sorta yam shaped contraband in your boob.” I thought to myself geesh I bet the Mexican drug cartel could make a lot of money if they just made yam tumor looking packaging and implanted them in women's boobs(they can pay me in royalties for the idea later). Not that I condone drug use, or drug smuggling into the U.S. or accepting money for the Mexican cartel, I’m just saying if money decides to “appear” in my bank account, I wont be mad at anyone, haha. I guess I just have a weird sense of humor or have seen one to many Drug Inc on NatGeo. 

Anyways back to the point, I go to my surgeon on Thursday and will bring the X-ray pictures with me and he will determine if we are going to remove this sucker right away or if they are going to try to wait till my body is more stable for surgery. For everyone wondering if it’s malignant(cancer) they aren’t sure yet! It does share some characteristics of a type of rare cancer but for the most part they said it will probably turn up benign(not cancer). They are however opting for removal instead of needle biopsy because they are unsure and also because of the size. So after removal they will run tests on it and I’ll let you guys know what they find.

I also dropped off my 24hr urinary analysis last week as well. Which basically is just a fancy term for you need to pee in a bucket for 24hrs and make sure to refrigerate it! Gross, like I want my pee next to my food!! Luckily, I have a bar fridge that isn't in use so I kept it there. (Pictured below is me driving my urine 24hr sample back to the lab. Safety first, no one wants pee all over their freaking car when taking a corner too fast)

The next doctors appointment, I'll hopefully get some more answers on how toxic my body is(with taste of a poison paradise, I'm addicted to you, don't you know that you're TOXIC; haha Britney Spears song reference hehe) and that will be on Friday the 4th, with my primary physician. All my tests will be completed by then; Ultrasounds, blood, and urine. So hopefully we can shine a little light on my unanswered questions.

In other news, I also had to stop taking one of my medications because it was causing confusion among other things. I could barely hold conversation and make sentences(confusion was a serious side effect and I was feeling very off). Also I have random bruises appearing daily. I would accredit them to my Anemia but my last lab blood report said my iron wasn’t too bad, so the bruise count is up to 14 I believe. I’m just over here looking like I took a hard tumble, which wouldn't be surprising to anyone who knows me(I’m very clumsy which is strange because my balance is excellent, so I suppose it's more carelessness on my part to not watch where I’m going, sorry world). This is only from part of one leg so you can get an idea, but they are appearing all over me. I notice a new one each morning I wake up and they range in size(they are a lot bigger than they look and they are tender).

I’m trying to think what else....I guess in regards to how I’m currently feeling. In two words; "Absolutely Terrible" but it could be a lot worse. I went to a wedding(my best friends little sister got hitched CONGRATS TORI AND ZACH) and proceeded to dance the night away with what engergy I could muster up. I’m pretty impressed I felt “normal” had to take occasional breaks and drink some water but other than that thought it went fine. When I woke up the next morning, my body disagreed. My joints are achy and killing me, I can barely limp around, I feel trapped in a 90 year old body, with a 20 year old spirit. I slept alllllllllll day yesterday after my ultrasound because I was a straight up gimp zombie at that point. I wouldn’t have done anything differently tho. I think its important to continue doing things I normally would with family and friends so that I don’t lose who I am as a person and let my bad health take over my life. Next time, I just wont pretend that I’m invincible when clearly I am. I was thrilled to be able to share their special day with them the wedding was beautiful.

Just wanted to update you guys again like I promised I would. Sorry I don’t have more answers yet on my progress and whats next. Believe me I’m just as eager and anxious as you, if not more. I will update on Friday and let everyone know how my next appointments went and what the Doctors say. Until then, thanks for reading, caring, and supporting me through this tough time in my life. 

Xoxo 

Tashara

Scars simply mean you were stronger than what tried to hurt you; HEALTH ENTRY. #1

So as promised (Even tho I’m about a day late) I said on instagram that I would update everyone on what is going on with my health issues. Explaining it over and over to everyone can be exhausting and I decided to track my journey to bring an overall awareness to people suffering with silent diseases such as mine. Close friends and family already are aware of the battle I have been fighting for years now and even unfriendly people who still remain anonymous seem to have a know it all opinion on what is going on when they have not even the slightest clue of my journey. For those of you whom are reading this and just finding out my, I guess you can call adventure, although not a very fun one, I welcome you. 

It all started when I was about the age of 12, I went to sleep as usual nothing out of the ordinary but then woke up to violent pains in my left side (flank pain) is the medical term for it and excessive vomiting. I was unable to walk, stand and could only shout for my parents to carry me to the car, it was unlike any pain I had ever endured. I was then rushed to the ER where they ran tests and after a day or so released me saying it must have been an infection and I was able to go home on bed rest. Being home didn't last very long by the end of the night I was back in the ER with the same systems. This continued to happen over and over again from age 12-17. I cannot even begin to count how many times I was hospitalized in those years but I was averaging about 3 visits a year most of them being about 2 week stays. 

Test were ran constantly blood work every morning at 5am, being woken up to be given something to help “fall asleep”. I could not eat when hospitalized the thought, smell or sight of food would send me into violent episodes of vomiting. Pretty sure they drug me up with every antibiotic possible and not to mention the pain medication I was given daily for comfort I began to grow dependent on. Having Morphine withdrawals when you are 12 years old is not fun. I became very frail, sickly and dropped down to about 87 pounds. I did have a team of Doctors trying to figure out what was wrong but a couple wrote it off like it was in my head even tho I had abnormal lab levels, wasn’t keep food down and was in so much pain. This infuriated me who would wanted to spend their preteen/teenage years in the hospital barfing all day! 

Luckily I had two amazing Doctors a urologist who took on my case even when signs were pointing to my kidney and another Doctor who was a nephrologist (kidney doctor) that were sympathetic and could see the pain and stress I was going through. They believed in me and they believed in how I was feeling and at the time when no adults besides my family seemed to listen to me really it really meant something and I am forever grateful. They found out that I only in fact had ONE KIDNEY and that my kidney had fused together when I was a baby making one large horse shoe shape kidney but only half of it was working (I like to refer to it as my lucky kidney kinda like finding Nemo’s lucky retarded fin).

When I was 17 they finally did a kidney biopsy and found that I have an incurable and untreatable kidney disease called focal segmental glomerulosclerosis I know big word right? They call it F.S.G.S for short. Each person has two kidneys in their lower back(except in my case I only have one). Each kidney is made up of approximately one million tiny filters called “glomeruli.” Much as a coffee filter keeps coffee grounds in, glomeruli keep valuable cells and protein in the blood. When glomeruli become damaged, proteins begin leaking into the urine (proteinuria). Proteinuria causes fluid to accumulate in the body, and prolonged leakage can lead to kidney damage and even failure. Focal Segmental Glomerulosclerosis (FSGS) is a rare disease that attacks the kidney’s filtering system (glomeruli) causing serious scarring. FSGS is one of the causes of a serious condition known as Nephrotic Syndrome (http://www.nephcure.org/fsgs-facts). The problem here is that you can’t reverse the scar tissue only try to prolong it so eventually my kidney was going to fail at some point the doctors said it could have been a week or years. 

I have been online bullied in the past by people telling me that I must be pretending to be sick for attention because I don’t look sick or act sick and also went to the extent of saying that I should act differently for having such an illness and posted really nasty things anonymously on a website that has since be removed. They talked about my disease like they knew something about it, joking that I was going to die from blood in my urine. To think that someone could stoop so low to make fun of a sick person and a disease that I have absolutely no control over is beyond me, I believe they are the ones that need to take a step back a reevaluate themselves as a person, so if that person is reading this today you should be ashamed of yourself. 

The struggles I have faced along this wild and hectic journey have been difficult but I am glad that I am a strong willed and stubborn and have not lost my fight to this disease even tho I had come very close to losing my life in 2010 when I was in the ICU. I try to be as open about the topic and light hearted with people as possible. Sometimes I even forget the seriousness of it when people ask me questions and I reply because it has been apart of my life for so long, living with it is as normal as brushing your teeth in the morning. I would rather sit here and tell the truth of my condition than to have bits and pieces falsely relayed thats why I decided to share whats now CURRENTLY going on in my disease if you have any questions I will be happy to answer them, they wont offend me in any way, I think thats what most people are afraid of. 

In July I started noticing that I wasn’t feeling well, and that my body was retaining water(edema is the medical term). I had this happen to me over the years in the hospital so that was my first sign that something wasn’t right with my body. I had gotten edema a couple times out of the hospital and it’s usually just something that goes away on it’s on. Well I waited and waited, I worked out every day, kept a healthy diet and still realized I was retaining about 10 pounds worth of just water. I had gone to the doctor for something completely different (I have also been having problems with ovarian cysts) so the doctor ordered blood work and ultrasounds. Not only was I retaining water, I was also having my menstrual cycle every other week another red flag (for boys that are reading this your cycle should be once every month or about 28 days) and also having some pain in my left breast. Enough was enough I was tired of feeling like an 80 year old so I scheduled my laundry list of appointments I needed to catch up on. First, I got my labs done and schedule an appointment with my primary physician. He told me kidney function tests were off the charts my BU and creatinine levels were extremely elevated along with dangerously high blood pressure and cholesterol levels which was caused by the stress on my kidney. He called in an emergency appointment with the nephrologist for the next day, and I was to report to the lab right after my appointment for more blood samples (luckily after 12 years of being sick I’m no longer afraid of needles). The next day at the nephrologist office he basically gave me the news that I am currently in STAGE 4 RENAL FAILURE. Which is the bottom of the barrel. I was put on several different medications and have more blood tests,  urine analysis and ultrasounds stacked up to do in the next month before I report back to my appointment on Oct 30th to discuss dialysis options. Along with that, my primary physician found a lump in my breast and ordered a mammogram on it. I went to the Dr. appointment today and the findings were a tumor about the size of a tennis ball that they want to remove immediately and test for cancer. I have an appointment with my surgeon on Oct 3rd and will know more then on how soon they will proceed with surgery, given everything that is currently going on with my health and body. Lucky me right, surgery and kidney failure, jackpot! My next doctor appointment for my ultrasounds will be on this coming Sunday for my kidney, lower abdomen, and pelvis (ovarian cysts) and the following week I will meet with my primary physician to go over the results. 

The last week and a half I had received some of the hardest new of my life and its only just the beginning of the life time battle I will be facing to keep my health and stay alive. I want to thank everyone for all their love and support in this chaotic time for me it doesn’t go unnoticed I promise. Lately I’ve just been very frail, tired and on bed rest. I plan to continue to blog my Journey and keep updates since its easier to inform friends and family this way instead of calling everyone individually and right now I’m doing my best to try to stay as far away from the hospital as possible! So everyone cross your fingers that I make it to the nephrology appointment on 30th without having to go to the hospital before hand.

I’m sure some of you may not always agree with my life choices, I know some people ask if you’ve had a kidney disease why would you have had a drink in the past. To that I answer this is my life, I’m the one that has had to fight this disease and I will be damned if I let it control my life. It could potentially kill me and has come close and I’m the one that has to die when that time comes, so don’t be so quick to judge. Although I am still young a there are many things I would love to do; Travel, get married, have a family of my own. I may never get that luxury but I   will definitely be able to look back on all the good times I have had if it ever comes to that point and think I did live a happy a fulfilled life full of love and wonderful people. Being terminally ill and sick so much really makes you look at life in a different light. I live my life day by day not sure whats around the corner. I’m not here to impress anyone, just here to be me and have a good time. Kidney disease is the 9th leading cause of death in the US and if for some reason I ever become a statistic I want to know that I had the time of my life while I was living. 

Doctor dates: Ultrasounds: Sept 29th

       Primary physician: following the results

       Surgeon appointment: Oct. 3rd

       Nephrologist: Oct. 30th

        *Not to mention the butt load of labs in between*

      Date of surgery: unknown at this time

I promise to keep everyone updated, maybe I will try to throw in some cool/ weird pictures of random tests and sick hospital images haha I may consider doing videos on YOUTUBE (click link to subscribe to my channel) for updates as well. You can also follow me on instagram as well my username is Tasharaaa, thats where I'll post pictures most often. Most importantly I just wanted to get my story out there because there are others that suffer from FSGS or other SILENT ILLNESSES that have probably felt alone at times and I’d love to bring more awareness and better understanding to everyone and remind people out there that they aren’t alone. Keep on fighting and keep on smiling even on the days when there seems to be no reason to, thats the days you need to smile the most!  Until my next update, thanks for reading. 

Xoxo 

-TASHARA