My Lupus Journey: From Severe Flare to Diagnosis! 💪🔍

I get my diagnosis and what was my first bad Flair like [Music] I started experiencing symptoms at about 12 or 13. the first thing that was happening was I was losing like clumps of hair literally clumps of hair but this wasn't constant it was intermittent although of course it was concerning then I was getting these fevers of like 103 and I would have like full body muscle Tremors um and then when I'd be brought to the ER they couldn't figure out what was going on and this was happening pretty consistently um I was also having these fits of like I would feel like I was too hot and too cold at the same time somehow I don't know how else to explain it and like my heart was beating too slow and too hard I don't I don't know how to it's really weird and that I would pass out completely lose Consciousness It Happened One Time in the middle of the County Fair um it it happened enough times to really be concerning but again it was really intermittent it was not that frequent and only happened a number of times um so it was just really strange I was also having a lot of joint pain and like some muscle weakness and I was having a lot of trouble getting up for school which became a problem but mornings were extremely difficult for me I would always wake up feeling exhausted now at this time my mother's a nurse she's been a nurse for a long time and at that time she was working in the emergency room I believe at my hometown Hospital so she saw Lupus patients coming in and out of the ER and she knew what she was seeing she took me to a rheumatologist in Albany New York and they only did an Ana test my ANA still negative by the way and the Ana came back negative they thought I was just a kid that didn't feel like going to school and I was just trying to get an excuse to get out of school because certain joints were hyper flexible instead of having limited range of motion this was their idea of diagnosing lupus back then um I just was a kid that didn't want to go to school right so fast forward to my early 20s I moved to the West Coast I was in Portland Oregon and if you've ever been to Portland Oregon then you probably know that there's certain parts of that city where it's just more of a pain to drive your car even though I had a car at my disposal at that time so I was taking the bus and to get to this bus stop there was this very Steep Hill and I started having problems going up and down that Hill it was like the muscles in my legs would just not the joints the muscles themselves would just lock up and it was like I can't take another step it was really bad it was like I had just gone to the gym and gone beyond the point of muscle failure my muscles would literally lock up and I felt like I couldn't walk anymore and it was happening very consistently fast forward to 2016 which was when I really started having problems even back then I had goals of relocating to another country I was working very hard I was working a lot of hours um I was just I was working way too much more than anybody really should I get like very like laser focused on on my goals and sometimes it's a problem so the first things I started to notice was um my hormone level seemed off and I knew that that's what it was because it was like my weight was fluctuating which I've never had a problem with in my life I was starting to lose a couple pounds here and there and I thought that's weird um and my hair was falling out and my like the tail ends of my eyebrows were falling out my eyelashes were falling out it's just things that you know I was getting hot flashes really bad and it kind of menopausal symptoms actually to be honest so it was things that as a woman you know like oh this is hormonal this is really weird I'm not anywhere near that age it shouldn't be happening but I kind of I was working I had goals I ignored it this was where I was so wrong a couple weeks go by I ended up moving I was in Florida at that time I ended up moving back to New York and all hell broke loose I'm telling you really quickly these hormonal issues are what I thought were hormonal issues got really bad um I started losing like five pounds a week it was really weird uh until I was about 102 pounds now I'm like five five and a half and my normal weight's about 127. and my adult life I've never really fluctuated in my weight I've never had a problem with weight loss or weight gain it's just ever I've been about 127 my whole adult life and up to this point I went down to like 102 pounds inside of a month it was insane so at this point I'm losing weight rapidly I'm going to all these Specialists no one could figure out what was going on finally I got referred to an endocrinologist who were did all these tests they thought it could be Hashimoto's Addison's disease they tested me for all these things it turned out that I had subclinical hypothyroid and they put me on levothyroxine except the way problems only got worse on level thyroxine actually everything got worse um and when you have hypothyroid you should be gaining weight uncontrollably not losing it so it really never made sense there were more than one occasion where my thyroid was actually enlarged also now my mother has Hashimoto's the antibodies the thyroid antibodies were negative so it just that didn't make any sense but the endocrinologists did find was that my testosterone levels were low even women have testosterone but it's of course in much lower levels than men but mine were like non-existent um not even measurable literally so I had muscle wasting at this point obviously with the weight loss and the low well really no testosterone I had muscle wasting at this point um my vitamin D was low my testosterone levels were low my DHEA was low my cortisol was low uh estradiol was low and of course I had that my TSH was off so I was right and assuming that it was hormonal but that was a that was only the beginning um my hair thinned drastically it became bratty and brassy and I had started developing these round bald spots and like the crown area that was bad but also what started to happen during this weight loss I started to become so extremely fatigued and exhausted and no matter how many hours I slept I would feel like I never slept at one point I was sleeping like more than 18 hours out of a 24-hour like period every day it was like this my eyes were black like this I looked like I had two black eyes it was really bad um of course you could see every bone in my body my face was really sunken in I just didn't look very good but also my muscles were extremely weak it was hard to walk um the little the few hours out of the day I was awake it was just like hard to do anything I felt so weak finally the person that I was seeing at the time told me about this doctor way out in the middle of nowhere thank God for her though um that was really good so I went to see her and she was like I think this is autoimmune and she referred me to a rheumatologist so I went to see rheumatologist and she reluctantly diagnosed me with Ana negative systemic lupus because my C3 and C4 complements were both very low at the same time I started on Plaquenil and I started getting better but it wasn't enough I had to obviously resort to you know the anti-rejection drugs and then things like cephanylope and Lista and that's where I'm at now but in between that time it took them over a year to figure it out while I was deathly ill I mean at one point they had me on foreign sure a day I had a script it was crazy I had to go to the pharmacy and pick up these giant boxes of Ensure so they wanted me on foreign sure a day plus three meals a day it literally hurt to eat like none of my body processes like all these normal things that you take for granted in your body that just work normally none of those things were working properly like I was having really severe symptoms of overactive bladder during that point um just everything was a nightmare for me every little thing that your body just naturally does it was a problem and my joints of course were cracking and painful and swollen but it took them over a year to figure it out and at first it was like well could it be Ms I did countless MRIs and they thought it could be a pituitary brain tumor because I had so many hormone levels that were often like it just didn't make sense so I went through that they were looking for a brain tumor then they thought well we want to do full body scan because this must be due to the weight loss and the hormone stuff some kind of cancer that we haven't found yet so really and I just I went through a lot it was really scary and it was always these like really horrible like oh it could be this it could be this and and they were like all the worst case scenario type of things and you know it took so long to figure it out that I just went through this point of like having this like oh it could be cancer it could be a mess or it could be a brain tumor like looming over me for so long it was the worst point in my entire life it was horrible it's very difficult when you're trying to get a diagnosis and you need to advocate for yourself and be as educated as possible and if you're watching this and you're going through something like this and your current doctors aren't figuring it out you need to find someone who will don't let them keep having you come back I'll come back in three months come back in three months and you're not getting any results go find somebody who knows what they're doing because you can suffer for years I lost years of my life to this you know if only a doctor had diagnosed me initially when I was a teenager and I first started having symptoms I wouldn't have lost all my 20s basically to this and so I really just want to caution you this is why I always say on this channel you can fire your doctor if they're not doing what you need them to do buy fired because it can ruin your life and they don't care they have 100 other patients it's not going to bother them it's not gonna bother their pockets just gonna be bad for you it's gonna lose You're Gonna Lose years of your life you're the only one who really gets affected by that not the doctor it doesn't matter what they think at the end of the day don't let what happened to me happen to you I just really want you I'm trying not to get emotional but I just really want you guys to know like I lost all of my 20s to this don't let this happen to you you have to keep going till you get an answer I remember signing myself out of the hospital against medical advice because I knew they didn't know what they were doing they wanted to keep me because the weight loss was so bad and I was like but you know what I'm in Greene County right now in Albany County New York and we don't really have good doctors there so I know that I could go to Kingston or Poughkeepsie or New York City Manhattan if I had to to find a good rheumatologist so I'm going to sign myself out of this crappy Hospital against medical advice and go see them that's what I did and that's how I got diagnosed I I'm not I no I'm not a doctor I'm not trying to give you medical advice or tell you to sign yourself out of the hospital against medical I would never tell anybody to do that I'm just trying to really stress to you that this is what I went through this is what I had to do and I just instinctively knew well I know where there are good doctors and they're not going to help me here so that's how it happened for me I really hope that things have changed um although it seems like it still takes people a really long time to get a diagnosis and that's unfortunate but if anybody meets help trying to figure this out if you think you're having symptoms I mean I'm just another patient but I will help you guys as much as I can and leave a comment in the comment section I get back to everybody but yeah it was it was rough that's how I finally got a diagnosis and what my first really bad Flair was like I was just finishing up editing this video and it was so hard to watch honestly I was in tears just even watching myself talk about how that all went down it was so it was really hard to watch but if you found this video helpful and you would like to see more content like this please like And subscribe it really does help me to keep putting videos out here like this and you know could really help someone that needs this information and this is why I always tell you guys at the end of the video to stay strong

Channel: Sharri K

Views: 9,272

Keywords: SharriK, lupus, lupuswarrior, sle, fightlikeagirl, mylupusstory, lupusdiagnosis, lupusawareness

Id: zR1yJUt1AC8

Length: 15min 21sec (921 seconds)

Published: Sun Dec 04 2022