My lupus diagnosis story

hi guys welcome to my channel i am theresa from dreamcatcher fitness and i recently was diagnosed with lupus sle systemic lupus erythema instrument i'll put it right here i can't pronounce it but that's okay um also was diagnosed with sagran's and i've already had hashimoto's and i've already had itp which is idiopathic thrombocytopenia purpura which is a blood clot or blood platelet disorder um so pretty much my body is like a jerk and attacks everything all the time so i wanted to talk about my actual leading up to my diagnosis because if you are watching this i'm assuming that you may think that you have lupus so this is to um you know make you feel not as alone because i scoured and scoured for hours and hours just trying to find answers so um yeah let's dive into it okay guys so the first thing i want to let you know is that um looking back i've definitely had it for years um but you know you i'm a personal trainer and i've been physically active for seven years now when i started my lifestyle journey um so i always attributed everything to over training i had no idea what was going on with my body um you know i'm gonna speed up to november of 2020 because that is when everything hit the fan for lack of a better phrase i started to have issues with my short-term memory in november of 2020. i didn't really think too much of it you know i've got four kids two being under four or a four-year-old and a two-year-old now so he was one year old um when all my symptoms started um really bad to where it was an everyday occurrence it wasn't just a flare here and there and i would feel amazing in between you know i mean it was every single day so it started with the memory issues um my husband started saying like why i don't understand i just told you this like why like what's going on why can't you remember or i would just on top of normal mom brain you know what i mean like going somewhere forgetting why i was there things weren't looking familiar when i was driving um you know i've lived in the same city for years and years and years and drove down the main road bazillions of times and i wouldn't remember houses being there things just didn't look the same um and then uh probably about february that progressively started to get worse um probably january februaryish of 2021 i started having like a really crazy pain under my armpit my it started with my hands tingling and then my entire arm went numb excruciatingly painful but then it went numb and it felt like if you've ever had surgery where they sever the nerves and then they grow back just that weird feeling and even to this day it still feels weird um but that's kind of what started to happen i lose i lost grip in my right side i started noticing things on my right side of my leg like i thought i was having a stroke i went to the emergency room everything was fine they did a mri of my brain and a cats or no i'm sorry they did a cat scan of my brain in the emergency room everything was fine because originally i thought i had ms because of the tingling and all this stuff that was happening i get no sores in the inside of my nose mouth sores fever blisters stuff like that but i get them inside of my nose um [Music] so went to the emergency room i ended up going to my primary care doctor because i was like something's not right you know i thought i'm a personal trainer so i was like well maybe i pinched a nerve or something and that's why my hands are going numb um but it was it got to the point to where i couldn't grip things i was having a hard time holding my child walking up the stairs um when i would work out my legs i would get electrical pulses down my right leg like just to where i could i mean literally felt like electricity was shooting down my leg and i couldn't understand what the hell was going on so um fast forward to my primary care doctor where i went in and told him what was going on of course you're young you're active you're invisible you know you're in great shape i'm sure everything's fine i just pinched a nerve blah blah blah and like it's been two months it should be better by now um it's definitely not a pinched nerve i told him he performed a short-term memory test in office which i failed um so then he gave me a referral to a neurologist so fast forward to march of 2021. okay so i went to a neurologist who did an mri the mri was totally fine he did an eeg which is the brain waves so he did an eeg which my right side of my brain their brain waves were slower on that side of my brain the i did a nerve test which was not very fun on my right side which showed weakness on the right side and then i actually went to a neurologist um a neurological psychologist and had the full memory test done which i failed um a few of those areas which um like when i was drawing a clock for instance um i forgot the 9 10 11 12 when they told me to trace or copy what i saw um so i was diagnosed with adhd um which makes so much sense from when i was growing up she said i had a cognitive dysfunction unknown source she didn't think it was dementia or like early onset alzheimer's or anything like that so pretty much after all of the testing my neurologist was like something's wrong but we don't know what's causing it great so because he said there was nothing structural so i did there was no mass or anything like that but it's definitely functional so something is going on we just don't know what i actually was in the middle of a very bad flare when i went to the neurologist and then really randomly it just started to get better in june so for that flare that neurological flare had lasted from november all the way until probably may or june and then it started to get a little better now we went on vacation and i was in the sun for maybe 10 minutes it wasn't even it was cloudy as heck we were in california we were on the beach it was super cloudy but everybody knows you can get very burnt even in cloudy weather so um no matter how much sunscreen i put on like i just it didn't work i was like what is going on with my body that's so weird well the first day we were there it was super cloudy the baby was taking a nap i'm like i'm gonna go sit out in the cloud and in the clouds and just enjoy the the beautiful weather right 10 minutes you guys i got so burnt on my chest i'll see if i can put a picture up for you um i got so burnt on my chest i've never been burnt like that for 10 minutes it was insane my face got so cherry red it was so burnt i had like this crazy line and then you guys my knees swelled up so big and i got like this crazy rash on my knees and it hurt like my skin was tight and i'm like what is going on um and for years i've had like the butterfly rash i did a video if you wanted to check that out about what i use and what helps me um but i had the butterfly rash for years and i thought it was rosacea i had no clue it was a lupus rash um everybody all my doctors told me it was rosacea like no one figured it out so um that was the first time that i have had noticed uh photo sensitivity um where it was very prominent um like people were like what is going on like you are so red holy cow so that was another sign um that something wasn't right so let's talk about the dreaded fatigue that comes along with lupus or any autoimmune diseases really your body is pretty much in overdrive right so you're attacking uh your body is attacking itself essentially so my very first flare that was serious enough to cause knee alarm it attacked my neurological system um so that flare had died away in may or june and then in august i live in arizona so it's extremely extremely hot in the summers i don't feel very good i get extremely fatigued um i just thought it was normal me getting old i'm 42 i have four kids like i just thought i was tired whatever but it got to the point in october september no no no so in august it started again a flare i could feel it starting my legs felt weird they just felt very heavy um when i would try to walk it was difficult for me to get up the stairs i'm not joking when i say everything hurt everything hurt my feet my ankles my knees my hips my shoulders every joint on my body hurt it was excruciating to walk up the stairs if you've ever had growing pains or shin splints that deep muscular pain my entire body felt like that i couldn't stand up in the shower like i had to literally sit down in the shower it was the most intense crazy fatigue that i've ever felt and um my body was just tired you know so finally i ended up calling a rheumatologist who um i felt listened to you know [Music] i was an advocate for myself and i'm really glad that i pushed because she did a full barrage of tests and um i ended up testing positive for um ss a row i'll write it here so you can see it but i ended up testing positive for that um i tested positive for it years ago when i was giving burt not giving birth but when i was pregnant with my fourth child and my ob missed it um we thought all the problems i was having during my pregnancy was from my itp which is my blood platelet disorder everything kind of acts up when i'm pregnant so i you know it was a really dangerous situation for me and the baby so we all just thought it was from that instead of actually being lupus related um so i tested positive for the ssa row i tested positive for the a and and i had a homogeneous pattern and my teeter was 1 320 or something like that which means i was in the middle of a flare you guys can i just tell you that i wanted to cry because when i read all of that stuff it made me understand that i'm not crazy so i went into the doctor's office after all the blood work came back she told me all of my symptoms were [Music] lupus but i also tested positive for uh sjogren's which makes a lot of sense now as far as like the dryness in my eyes and the female areas and just a female area my mouth just constantly feeling like parched you know the joint pain just everything that i'm feeling so um yeah it's been a journey i wanted to share everything with you because um i just feel like there's so little information out there i am extremely physically active so when my grip gave out and i couldn't lift a quarter of what i was would normally lift i knew something was wrong and this is where i need you to be a huge advocate for yourself it is extremely important that you push when you feel like something is wrong we know our bodies and when you have to sit down in the shower because you can't hold your arms up to wash your hair uh to wash your body to pick your child up and take him up the stairs um when you can't pick up a five pound dumbbell because it hurts too bad like there that's a red flag guys um you know it affects nine out of ten of the patients that are diagnosed with lupus are women so especially if you're a woman or a woman please take it seriously get into the doctor and just talk to somebody um you know about your symptoms and if they tell you you're too young you're too you guys find another doctor that listens to you i'm so glad that i didn't listen to my primary care but when i think about it you guys i've had this for years my first experience uh was my ankle swelling up so bad that i couldn't walk and i was doing insanity so i attributed it to overuse you know but it was bad it was so bad that i couldn't walk and it took you know a good month or two of not doing anything for that to get better um my thumbs swelled up i couldn't i couldn't uh grip anything with my thumbs and still to this day they're really messed up my hips locked up and erased that i was doing for i did tough mudder and about a third of the way through my hips locked up and i could not walk um there's been signs there's been symptoms but it's like you just when you're that physically active you think that it's just your body fighting you back like okay lady you need to calm down you went a little crazy now we're gonna show you that you can't walk for two weeks you know what i mean it's like i would do a 5k and be in bed for six days because i could not physically get out of bed so you know that's not a normal recovery process when you've pushed your body too far you know so i just feel like i just really wanted to share this um as an athlete as somebody who is very physically active who loves to push my body those are not normal recoveries those are not normal length um you know for your body to get back to normal it should not take you know you shouldn't swell up that big and have issues walking for for six weeks after you've pushed you know so just listen to your body um you know there's so many signs and symptoms of this disease oh my gosh the depression the anxiety man we're gonna take a break okay so the anxiety after i had my son the anxiety was so bad um i was in a very very very dark place i got put on medication to try to help me um it dulled it but it was still there it's still there now it's very bad so when you feel chronically ill when you have chronic chronic illness and you're hurting all the time and you're swollen and you just feel like crap it messes with you mentally so bad i've had depression the worst that i've ever had in my whole life i've had anxiety the worst that i've had in my whole life but now i don't feel crazy i feel validated like you're okay like you're gonna be okay you're gonna figure this out you're gonna navigate it um and i will be okay now that i know the why behind what's going on um and once you get answers you guys it's just so validating you just feel like all right i'm not crazy like there's something seriously going on you know so um just know i'm going to be doing a series um about my journey i literally just got diagnosed two weeks ago you guys um i am on hydroxychloroquine 200 milligrams um only i opted not to do steroids because i feel like my flair is kind of at the tail end and i'm getting a little bit better right now so i am um taking that i've been on that for about a week a week and a half not really noticing anything as of yet but it's a very slow acting drug and it takes a long time to get built up in your system so um i'm going to be documenting my journey i'm also going to be documenting my workouts and uh taking you guys through some workouts because there is no information out there for us there's not there's just not and when i was looking into programs you know the anti-inflammatory diets like just any any kind of pertinent information for me being physically active already and it's just not there so i found my calling so i will be here to help in any way that i can um yeah and i look forward uh you know to helping as many women as i can because that is my purpose i want to give as many women as i can hope um because there was just so little answers out there so much love hit subscribe and uh you know if you like what you saw if you want a little bit of motivation or have questions or anything just please please please you know contact us or contact me or shoot me questions drop a dm whatever you um you know if you have questions so you

Channel: Dream Catcher Fitness

Views: 9,760

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Id: 5M9tAjyUc3k

Length: 19min 25sec (1165 seconds)

Published: Wed Oct 13 2021