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