Sunday, January 25, 2015

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

3 comments:

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