The Battle Within Myself.

Just one battle that has damage to my body, that I had no control over and nothing will ever fix. I am sure some of you feel I complain a lot lately . I am in a battle of hell, of darkness, a place I have never met before. Having a hard time accepting many things and not looking forward to what comes ahead . I have IIH some say its a fat issue maybe so maybe not I know many from a wonderful support group that are bean poles that battle this . I am unlucky or maybe I am special. I am not for sure yet, but this has caused damage to my eyesight ,it has flatten my pituitary gland that produces hormones its the central station it in your head it controls everything. When weather changes or i am sick or under stress or just because the pressure builds up imagen your brain in a vise grip. This acts like a brain tumor with all symptoms . There are two meds out to treat the fluid build up I have tried both its as bad as ,meth, the best solution is getting lumbar punctures and getting drained unfortunately i have to travel to have these done. and the risks are high now that I have a blood disease that affects my body mainly my spine neck its not so much a great option for myself. We have talked about shunting but with my conditions I am battling my neurosurgeon agreed we don't need to complicate things more, as shunting there are always problems and many surgeries. I will only shunt if my eyesight gets worse it all depends on the pressure but I know the signs now. I am learning to balance things out. I encourage young girls to educate themselves on forms birth control as so many cases have linked back to certain ones . this is not the case for me. I truly believe mine happen during childbirth found by accident by an episode i had while i was getting blood work done history of spells but this one day a new dr was working and would not leave me leave until things were further checked as I had always blamed these spells due to blood sugar or heart rate issue. CT was done and was found it is a very rare disease. Its very painful at times and makes you feel like you have lost your self and gone crazy. I am blessed to have had many medical professionals and personal support on this long journey . This is was just the start of things for myself. after many years pieces are coming together , confirmation that the fibro is real as i had always question it , arthritis taking over parts of my body the wear and tear. if this was only things in my life. it would be so much more simple. This last year I had been dx with Spondyloarthritis (AS) all these years of chronic inflammation and pain i have a name. i would not wish this on anyone I have the genetic gene its a blood disease in the HLA family with this piece now maybe we know the reason for the funky heart conduct issues other issues that come with this. as a kid I was sick all the time I don't know why I was not checked back then with all the bleeding ulcers and the polyps i have had cut out just as a kid still doing the same things to this day. Staying as active as I can is the key and it has been a challenge with our in pain and some nights not able to walk to the bathroom you think I am going to go spend thirty minutes at the end of my day to walk 45 minutes hell no. but i know its a must biking is my things is not as hard to do but its hard to get off that bike after the miles are put on. when one things flares it effects everythings. becomes a storm and does not calm down for a very long time. my meds i am trying have weaken my immune system so anything kids get i get ,takes me three times longer to fight it. i am constantly fighting I am getting tired I had said a while back there not much more I could take well careful what you say. I have thyroid issues been doing well with meds . I went in with a lump to have checked out did a scan was going to do a biopsy well not just yet. and the biopsy not even for the lump like what the hell. Its for the other side and some other things going on. I am now off meds for a month so i can do a nuc scan which i guess takes two days . before this last bump in the road I was already battling keeping my mind healthy I am not going to lie it went downhill fast you just get tired of being tired and fighting sucks when your body does not want to get ahead and everytime your sick uti, resporrity infection, something. I have gotten to a point of saying screw it. I am not ok. I am so lost not even sure what direction to go . never have i have been to this place. It would be much easier to just have one thing and know have answers and know what meds will work and not worry what meds will interfere with others that causes other issues. Its all about balancing. I recently seen my neurosurgeon praying that he would be able to help with my spine and pain. maybe a miracle he had the same talk with me as many others. I am pretty stubborn and when i don't want to believe or her i keep seeking for answers. I am accepting this i am owning I will never be pain free I am aware that things in this journey of mine will progress as it has. I understand that what works now may not later. I know if I just quit and give up i will be in that wheelchair sooner. somethings that hit home thats clicked to just accept things is when the dr said surgery will not fix it alll losing weight won't fix it. It's in your blood and we can not change that. At that point in time tears and emotions flooded i don't normally show my weakness but that was a kick in the gut. I am 40 years old i guess i will be 41 in a few months i have four children at home that see me at my worst they hold me up when needed i know this is not easy on any of my family, I am trying but there are times I question why who wants your babies to see you and to have to have them help do things to help with daily things that should be simple some are personal. They all have big hearts and never complain even when I am angry or when i have fallen. I know they are my reason in life . The next weeks to come will be a test for my emotionally state my pain level i am already struggling. Taking my support away pill wise i am already feeling it. I stopped the rummy meds until i know if this is cancer or what we are dealing with. the meds i take side effect is cancer makes no sense to me they give cancer pts same meds different doses to cure and kill but they give autoimmune ppl same meds with the a pretty good risk of cancer . but it's a risk you take to live it's not about quantity or how long i am going to be here it's about quality and making the best of the moments in life it's not even about days to me as life changes minute to minute. whatever comes of this its just another dx on the list . I hit rock bottom very recently the lowest of lows I have recently had a awakening i have always had god by my side and a true believer. during this darkness i was challenge i kept crying why do you not hear me. Why are you punishing me i have asked forgiveness for those things i have done in my life that was wrong i am a sinner every day . you have given me everything I had ever asked for . why leave me why am i so far from you. He finally spoke or maybe I finally was open to hear him it was awaking that i have never felt or had in my life I am not ready to share but will in time. I am going to be ok. even when i am not ok. and i am learning things about myself that i never knew I am going to pull through this battle and no matter what is to come it's ok because he took my hand and said do not fear . I need an army on my side for myself and family love positive energy I know I have this I have angels around me with my spiritual guide working over time I feel them i hear them I am blessed even on those days I am unable to see.