Hey guys! I wanted to finally share with you guys my diagnosis. I have known now for about a month but it was a little difficult for me to film this video and finally get it posted for some reason. I am doing my best to stay upbeat and positive about the situation! I have been feeling sick for years with no idea what was going on with me, but now I have a name to put to it and hopefully a way to mange my symptoms! The thought of not being in pain/uncomfortable all the time or dealing with the crushing fatigue is really exciting and I am hopeful I will start feeling better! Love ya💖
I have RA border line Lupus and also Fibermialgea. Sorry if that is spelled wrong. So I know exactly how you have been feeling. I hope you get all the medical help you need. This is a long journey.❤
Sometimes with big news you just need time to reorder your own thoughts and feelings before you're ready to really share it out into the world. I've felt that way about a few of my chronic illness struggles, I just didn't want to be processing it out loud with other people until I was ready. That is pretty normal! And so is not always feeling positive, so don't worry about having bad mental health days and just remember that all you can do is your best on any given day. Here's to hoping that your doctors find a good treatment protocol that helps you feel better quickly!
Girrrrlll, I was diagnosed with Lupus at 12yrs old. My mother passed it to me. I was WONDERING this the whole time. I’m so sorry. But I’ve got 28yrs of SLE under my belt. I can answer anything I can for you. I’ll be 40 in November. I became legally disabled at 23yrs old. Then even more diagnoses. If I could go back and talk to myself during my early diagnosis I would tell myself, let yourself rest, if friends don’t understand-screw em, don’t over do yourself or you’ll be in a worse flare. Do not guilt yourself for being sick. Love yourself, stay away from stress- huge trigger for flares. You’ve got this. ❤
Great advice! Stress is horrible for AI. Anytime I go through a lot of stress/worry, I can pretty much guarantee that a flare-up will be in my near future.
It’s people like you, that gives me hope for this world. Your kindness is infectious!! I don’t know you, but I just hope you know that being positive , understanding , caring and supportive is making more of an impact than you think. Thank you for shining your light on other’s. YOU ARE ENOUGH!!!!♥️♥️♥️
My mom was diagnosed when I was 9 and it runs heavily in our female line! I have so many symptoms but I have never had health insurance and can’t afford testing/treatments. Nobody ever understands why I’m always sick and tired 😞
I love your honesty, sometimes I think you might stroke out... ANYONE saying expecting value for what you pay for is being ungrateful is the type of fool that keeps companies spewing garbage every year.
Seriously! And she's the most positive supposedly "negative" reviewer I've ever seen. Like she's never mean and makes good points about value. Those negative comments towards her videos honestly make me angry!
I have lupus. It’s a wild ride. I’ve been diagnosed now for 12 years. It’s a delicate balance to get it right. It takes time. Be good to yourself and be patient with yourself. No one is ever an expert in lupus because it’s an ever changing illness that is different for every person that has it. My lupus is not your lupus. You will learn to manage it, you will learn to adapt, and you will learn to thrive. Take your meds, hydrate, rest, and be so gentle with yourself right now. You can do this. There is a whole community of us that have your back. We love you.
Hang in there girl...I was diagnosed with Multiple Sclerosis in 1971....worked hard to learn how to walk again...am 77 now, still walking, use walking sticks when out in public, so I don't faceplant myself on the sidewalks. You have to learn what works for you, what you read may or may not help, but you be you. I love your videos...they bring me joy!
I was diagnosed with MS 3 years ago and I’m 45 but the first neurologist about 10 years ago wouldn’t diagnose me because I only had 3 lesions. But we all need to stay strong and live our lives to the fullest 💜
@shellykozun3813 I know she would be honest" even if it was ALL free!! Get ur Fred stuff alex !! Why not. Just stay humble and real with us !! Love N Hugs **
People complaining that you're telling the truth are idiots. I watch your channel BECAUSE you tell the truth, and the fact that you purchase the calendars gives you the right to complain if it's filled with crap. Now to your health, it's ridiculous that it took ten years to be diagnosed. I have fibromyalgia, and the symptoms are similar. It took years to be diagnosed with me too. I'm going to keep you in my prayers, because it really does help!! I hope you feel better really soon, and that it won't take as long as normal for the meds to kick in! 💕❤💙💜💛
The best part of advent calendar season is seeing you react to the *audacity* of so many of these companies with their terrible advent calendars and be impressed with the ones who actually try to do a good job! You are doing a service to humankind with those reviews!!
Yes! It is good to find out which ones are actually good, but I get way more excited about the bad ones! I know there will be some really fun reactions and a cathartic rant. High quality content to me.
Same here RA but I often have the other Lupus symptoms. Auto immune disease is not nice but manageable. Half the battle is knowing what is going on. I have learned to listen to my body. I rest when I feel the need. I've had it for over 20 years and yes it is not great but I'm able to live my life. Okay I can't trek and run like I used to but I'm 63 so there is that. 😂😂😂 onward and upward warriors!!
I appreciate your criticism of the advent calendars that are ripping people off. Your humor and rants are entertaining, and it's stopped me from buying certain calendars. Please don't stop
I agree! Don't let people's comments affect YOUR comments, Alexandria!! You ALWAYS give honest reviews, and that's what we all appreciate!! WE LOVE YOU, GIRL!!! ❤
I can relate to the "at least it's not lupus". My neurologist told me multiple times "it's not MS". 3 month later, a spinal tap revealed that it WAS MS. I found that knowing what it is helps a lot.
Same. After multiple doctors and ER trips, they finally did an MRI and said “we think we see something “. Got admitted for a steroid round and a spinal tap, which confirmed MS. I had just turned 28.
Hi! Brain injury here. Think of a "diagnosis" not as a definition of you but a framework that you can work within. Big diagnosis can be overwhelming, it's like you just figured out your pant size and now you can shop and always get exactly what fits. Join a few online support groups to get tips and support. You got this, your how to operate Alex guide just got another chapter. Don't let it define, let it guide you. Hugs!
Girl, don’t apologize for your brand: you’re not negative. I feel like you are so hopeful for stuff, you give them the benefit of the doubt every year. It’s obvious that advent calendars ought to provide some value (especially if they’re for gifting or something) and the almost never bring the value. We love what you do or we wouldn’t be here. Keep your chin up over your diagnosis, it’s ok to feel overwhelmed at the same time as you feel relieved to know more. Keep it up!
😂I also welcomed her to the spoonies 🫶we are a welcoming bunch for being so ill. We really do spread the love in our pain...howdy fellow Spoonie,I hope today you have many spoons to give ❤
I’ve never heard of spoonies either. As someone with Crohns and RA, the fatigue and constant pain sucks. I hope everyone here who’s suffering is able to find some relief 😊
As a healthcare worker, I can tell you that Lupus treatments have come a long way. You got this! And we will always be here for you. On another note, I find you are so positive with the advent calendars and so polite if they are bad. I wouldn't be nearly as sweet as you. If you spend, $200 and you get a compact mirror, you'd be pissed off, right? I love your advent unboxings. I also love advent calendars and I am anxiously awaiting the Harrod's Fragrance one. TFS!
You're in a unique position where you can experience a plethora of advent calendars because it's the "job" you've chosen. I don't see an issue with you being "negative" about them because a lot of them are pure garbage. The average consumer will have a limited budget to spend on something like that and personally I would be so disappointed if I spent a ton of money on an advent calendar and got stickers, key chains, and hair ties. You're spending your money on them, giving an honest review, and hopefully protecting the average consumer from buying a huge disappointment.
People whining about your calendar reviews simply don’t get it. It IS corporate greed and they need to be called out, and you have a voice to do that. I will say this year look into cool and different ones like from etsy shops. It’d be awesome to see some indy brands too. But i love all your videos, please dont stop doing what you do.
Agreed. I wonder if a lot of those comments are from misogynists. I’ve noticed (esp in politics, but everywhere really) that men (and some women) called ONLY women “ungrateful”, as if women are lucky to make any choices or see any financial/career success. I have no studies to prove this, but I feel like it’s worth pointing out
Having a diagnosis can be so freeing. Having an answer can be a relief. When I was diagnosed with cancer I was like..oh, that totally makes sense. I noticed your butterfly right away at the beginning of the video.
@dsfv100 ugh hate when docs assume it's just anxiety simply bc they can't find the problem at that time. Most of us know our bodies pretty well, and we know when something absolutely is not right/going sideways.
@@dsfv100oh my god i’m so sorry, of course it was ovarian as well, they never pay attention to womens problems it’s infuriating, took me years to get diagnosed with pcos and endo, all they kept saying was “go on the pill” or “eat healthy and work out”, it is not so simple as that. being a woman is a burden sometimes, especially with healthcare.
In regards to Tator: "You do the best you can with the information you have." All the information you had at the time was that cytopoint would not affect his seizures and it was a treatment option that would help your poor, itchy boy. Don't feel bad about doing what you thought was best for him at the time, especially since it was recommended by the vet 💞
My boyfriend has lupus and I've got a different autoimmune disease as well! As for lupus, he was diagnosed when he was in college. The fatigue is real, the body aches are legit, and its a difficult autoimmune disease to manage but you got this!! Listen to your body. With autoimmune nothing is black and white, whats true for one person may not be for someone else, so work with your body and work with a doctor you really trust. ♥️
I’m so sorry Alexandria, but I was born with complicated congenital heart disease and had my first open heart surgery at 7 years old and it was a 50-50% of survival as it was an experimental procedure. I’ve done so much that people didn’t think I would able to do, I’ve even worked in ski results in France (I live in the UK). I’ve got a 25 year old son (my generation was the first generation with my condition that have been able to have kids), I’ve had two more heart surgeries and now a pacemaker. I’m almost 60, my parents were told if I didn’t have the surgery at 7 I would probably in a wheelchair for life, still don’t need one. Just keep going Sweetie and keep fighting their expectations.❤❤❤
I was afraid that Lupus might be your diagnosis but at least now you know and can be treated properly. I'm really proud of you for pushing to get it all figured out though, that does take courage.
For Wren- make sure they are also getting an x-ray of his neck. Smaller dogs can get a cough related to a tracheal collapse (when the cartilage around the trachea weakens). It can be worse after activity, excitement or if they have a leash attached to a collar and they pull on it.
That’s what happened to my Pomchi! He had the cough, collapsed treachea, and ended up also having a congenial heart defect. When I adopted him I was told he was 5 - turns out he was actually 10. He was diagnosed 2 years after I got him and put on meds I couldn’t afford, so luckily my parents stepped up and took him in and paid for everything. He’s 16 now and still a cheerful lil guy who loves life. So grateful it’s not always a death sentence and they can still live a happy life.
I am sorry to hear about your diagnosis, Alexandria, but as someone who has dealt with lupus since the mid 1990’s, I can honestly tell you that it is not a life sentence, in fact, my lupus (sle) has been in remission for the last 5 years & I have never felt better (I will be 60 years old in November). I actually got better when I went off the steroids & other medications. I felt the medications were making me sicker. This being said though, please listen to your doctor, but more importantly, listen to your body. A good rheumatologist is key & it sounds like you have one. It also sounds like you have a lot of support. Reading your comment section, it seems that you have a lot of subscribers who have lupus, so please reach out to us with questions & concerns. You are loved & I am praying for you. 🙏 xo
I was have Fibromyalgia and Rheumatoid arthritis and I wondered about Lupus for you, but I want you to know it's okay to be sad about it. It's okay to be sad, and angry, and to grieve. Having a chronic illness is very upsetting and hard to come to terns with even if you've been struggling with symptoms for a long time before diagnosis. I started having fibro symptoms at 14 was diagnosed at 22. Came down with RA symptoms in 2016 diagnosed 2018. Each time there was a process of grieving and anger and I still struggle with that sometimes. One thing I will say is dont wait to get assistive devices. Pillows, cutlery, speciality knives, etc. It can feel a bit embarrassing at first but you don't deserve to be in pain when you don't have to be
I was just recently diagnosed with lupus 2 years ago. Still trying to find the best treatment for me. Don’t let it take you down but try to rest when you can. ❤
I have SLE. Was diagnosed in 1998, I am currently in remission. My grandmother had it. I have experienced and been in the SLE world since I was 13. I’m also a retired medical professional. Reach out if you need someone to talk to. It’s scary at first, but you can live with it a long and happy life.
Have the vet check Wren for a collapsed trachea...🙏🙏🙏🙏 I had a pug diagnosed with one ❤️. I'm sorry about lupus & poor Tater. I'll keep all of you in my prayers
So relatable. People think when you get a chronic illness diagnosis that you break down with immediate dread. But honestly bc it takes so long it's a relief to know it's not just in your head. It feels good to know it has a name and you're not alone.
You are not complaining or ungrateful with advent calendars. You are honest and looking out for the interest of your supporters and the public. It's why l only had to watch a few of your uploads to decide to subscribe and stick around. You are appreciated xxxx
With the plaquenil (aka hydroxychloroquin), make sure that you get your eyes examined regularly! It helped me for MANY years, but then, I found out that I had a really rare complication from it (retinal toxicity). It's important to just keep an EYE on it (pun intended 😉)!
My Rheumatologist requires the eye exam every year to renew my Plaquenil prescription. Part of it is a field of vision test because it can affect your peripheral vision. The ophthalmologist also looks at your retina to make sure you don’t have issue you have. My doctor said he’s never seen a case of it, but you’re proof it does happen.
@SueLW65 unfortunately, yup, I am, lol! I swear I get ALLLLL of the rare stuff and the worst of the possible side effects for everything, lol 🤦♀️ I'm always glad to hear about rheumatologists taking it seriously - and mine did too, actually! I had been getting tested every 6 months to a year, but somehow, it still happened... 🤷🏻♀️ Now I am still tested often and have an ophthalmologist who specializes in it who follows me (added her to my long list of specialists - I joke that I have one of each except for a proctologist at this point!!! 😂😂😂😂). Stay vigilant! I hope your lupus is well controlled? But yeah, this really screwed up my vision... I have almost zero night vision now, which really sucks! But the plaquenil really helped, in conjunction with my cytoxan (cyclophosphomide) and Imuran... now I'm on Cell-Cept and a ton of other stuff. My journey with all of my autoimmune issues and everything else has been a loooooong one, as I got sick/started showing symptoms around 11/12 and was diagnosed with juvenile arthritis at the time and "asthma" (which turned out to actually be "pseudo-asthma" caused by pulmonary vasculitis from my lupus). Then, at around 21, I was finally diagnosed (which was easy to do as it was attacking pretty much every organ/system and joint in my body by then). Since then, I have had more than my fair share of struggles, ofc, but it also made me and my family become extremely close and I have had 2 AMAZING service dogs in my life who helped me through it, too!
I also have an autoimmune disorder without a diagnosis. I hope you don’t let this discourage you too much and remember you are NOT alone. Knowing this can help your doctors help you manage symptoms and feel the best you that you can be. We love you Alexandria and we are here with you for the journey.
Me too. My previous doctor thought it was very likely that I had (have?) lupus. It was amazing to finally be able to put a name to the issue after all these years, but that doctors has since left the area. My current doctor thinks it is probably porferia. Having the theory change felt like a rug being pulled out from under me, and I don't why. I suppose it's related to all those years not knowing. But again, still yet to be officially diagnosed with anything, just some people in coats with strong opinions. We shall see. Wishing you all the best.
For me the first year was the worst. You mourn the person you were going to be. My 9 year relationship ended because he couldn’t handle it. Not saying that will happen to everyone but it can happen. It’s rough and it’s okay to cry and feel bad for yourself. Sending love your way. ❤
You cannot beat yourself up about not doing something for your health when previous providers cleared you. You can only look back and say okay. I don’t have SLE, but fibromyalgia and went well over a decade before finally being diagnosed. For nearly another decade after my diagnosis I was angry. Angry at myself and angry at the doctor I had when my symptoms started. For years I lived in anger and wallowed in pity for myself. What I should have done and what I encourage other spoonies to do is take it one day at a time and sure get upset, but remind yourself that you can’t fix the past, but only move forward. Thank you for sharing something so life changing and difficult. You are an inspiration to me.
I received a diagnosis of Ehler Danlos Syndrome. A genetic condition. So I have had this my whole life. And I'm 55, So I really get your feelings. I live in Sweden. I absolutely understand the long way to get a diagnosis. And for many cases to get the right treatment. I hope you will feel better soon. And you can always google and find out more about it. And find other people with the same illness. Wishing you all the best! ❤
I see sooo many people these days talking about being diagnosed with hEDS, so I'm guessing it must've been something that doctors didn't used to test for much?
It wasn’t added to the diagnosis manual until something like 1998, so us Gen-X who have (or suspect we have) it, went our entire childhood without anything TO diagnose. I remember reading an article in a magazine about it when I was in college and showing it to my mom saying “I think this is what I have!” All the parlor tricks were fun as a kid but are so painful now. Being able to do the splits as a fat kid made me feel special, but I didn’t know I should protect my joints and I was doing so much damage.
@@vj4195 I was dancing ballet from 5 years old until I was almost 13 years old. I was my ballet teacher's pet. And got to dance 🩰 in these and with senior guys in dance show's. I really got hurt many times. And I have ADHD. I was a really wild kid. I was skateboarding. I climbed on absolutely anything. Looking back at all the things I did. I'm surprised it didn't end up much worse. 🌻🥴
My mom has lupus and has had it for years. It’s struggle and an adjustment, but you’re doing great ❤ I wish the best for you and I’m sending you lots of love and prayers ❤
I’ve learned over my 68 years that we need to advocate for ourselves. I’m glad that you finally have a diagnosis and hope that you find a good health care provider that listens to you and helps you to understand your symptoms and options. You are such a beautiful light here on CZcams and I love watching all of your videos. Please be kind to yourself and take each day as it comes.🙏🏻
Chronic illness sucks, but getting that diagnosis after SO SO LONG is so satisfying, speaking as someone who kept seeing multiple doctors for years over the same issues and they all drew a blank. It took me almost losing my eyesight to finally get that diagnosis.
I was diagnosed with rheumatoid arthritis at age 12. (They originally thought Lupus) I’m now almost 54. It’s been a long road. They have lots of medication they didn’t necessarily have for me in the early 80’s. So that’s a good thing. I wish you all the best Alexandria. 🙏🏼🙂💗👍
Plaquenil/Hydroxychloroquine has been a life saver to my lupus. My arthritis disappeared! I got back on it a year ago and I’ve felt my best! And lol yes, that’s a rheumatologist for you. Looks at blood work, you kinda got to say what’s bothering you or new symptoms before they disappear. I have SUCH high hopes for you on this medication. But Theres always others.
I was diagnosed with Lupus at age 20 after five years of being sick, misdiagnosed, improperly medicated, and gaslit by doctors who thought it was all in my head. That was 20+ years ago, and I still need to make adjustments in my daily life. My advice is: rest when you need to, slather on the SPF when you go out (even if it's for short periods), and don't overdo OTC pain meds - they cause all other kinds of damage. Thank you for being honest and sharing this with us. ❤️❤️❤️
If you don't mind my asking what is the sister to lupus? I enjoy learning about these things... I also am disabled, I severed my Sciatic nerve from running away from an abusive boyfriend and there where stairs and I didn't see them bc I was looking back and bam I fell hard on my butt and it just snapped my nerve honey my leg swelled up like a balloon... I was in the hospital for three weeks and came a hair of losing my leg... Thank God I didn't... So that's my story of being in pain the rest of my life....
@@terryblevins2516 so sorry to hear that but glad you made it out! I have vgkc encephalitis. It’s a super rare autoimmune disease. They call it the sister disease to lupus only bc it’s closely related in symptoms. Unfortunately with mine there is currently no known treatments.
I was diagnosed with RA at 14 and Lupus at age 30. Have I got stories for days! I am stubborn, bossy, determined with a wicked dark sense of humour which has helped!! “Welcome” to our world!
Advent calendars feed of FOMO and the curiosity of consumers. I literally found your channel because i was researching Ipsy back in the day to see if it was worth getting. You’re providing such informative content for those who care about value gained from these “surprise” boxes. I appreciate your honest opinion because you’ve been doing this for a file and you know what’s up!
Im disabled (mainly from stage 4 Endometriosis and Cyclic Vomiting Syndrome) from chronic conditions, so my heart goes out to you ❤ sending you all the love, hugs, and all my extra spoons🫶
I live with Fibromyalgia and it has taken its toll on my life...meds to manage pain etc...now I have a new problem... there are days I just want to cry...but I do what I can and push thru...so hang in there Love...it will get better...❤❤❤
None of us wants our pets to get sick and it seems that you are doing everything you can to keep them healthy and happy. But also, I believe that one of the most important lessons they gift us, is learning to deal with death, loss and grief. And they’ll wait for us on the other side of the bridge 🥰😇
I love hearing you say "i told my husband i wanted to get tested" having your person by your side during chronic illness is everything. ❤as a fellow Spoonie,i see you and im holding space for your journey. Autoimmune conditions are a journey.🦋 You've got this, especially with your husband by your side❤
This is so crazy. I’m going down the path right now of getting diagnosed with Lupus. I have my first Rheum appointment on rhe 7th after having a 320 ANA. Just know you’re not alone and thank you for making me feel less alone.
Girl I’m so glad u do hold them accountable we pay a lot to buy these boxes through the years . I was diagnosed with fibromyalgia and it’s hard not to get down but you adjust your life to changes nearly 4 years ago I had cancer once surviving that everything else seems small good luck 🍀 hang in there it’s going to be ok
Im glad you persevered to get your diagnosis. Rooting for you! On the calendar front - don't ever change. i'm pretty sure 98% of us are here specifically because you are honest and unafraid of calling out these multi million dollar scam companies. You are our consumer champion queen! ha (also for your charm, humour and great company of course).
I know I'm only one voice, but I love how brutally honest you are with advent calendars. You're also very entertaining. 😂 I'm not sure what you're supposed to be grateful for when you're spending a ton on calendars that aren't worth the box they come in. I'm happy you got your diagnosis. That's going to lead to a level of peace for you. I love the fur babies and I'm sending them positive energy for health. I love your channel.
Oh no... but finally a diagnosis. Now, it's time to make the lifestyle changes to put it in remission. My bff, Tracy Lynn, has Lupus. She does a lot with her diet. Best of luck to you. You got this!! ❤
I am so sorry. I was diagnosed with lupus 7 years ago. That diagnosis came at least 14 years after my first symptoms. I am doing well now and I hope you will be, too!
I love that you tear apart the advent calendars, and I bought one BECAUSE you reviewed it, and another one just because my daughter wanted to play CZcams reviewer. It was a lot of fun and I hope I can again soon.
It must feel great to finally have a name for how you've been feeling. I truly hope and pray you get relief from the meds sooner rather than later. I'm praying for ya, Girl. Thank you for sharing with us. That's really brave. As for the advent calendars, it seems to me that the ones from Europe (especially England) seem to be so much better, BUT the shipping is insane. I love watching you open anything. I love your honest opinions and rants. Please don't change.
The extent of my knowledge of lupus is that it's an autoimmune disease, Selena Gomez, Toni Braxton, and Seal have it, and various forms of lupus affect various body parts and/or organs. For example, Toni's lupus affects her heart whereas Seal's lupus is responsible for his facial scarring. But there's a silver lining here. Every one of them are still making it and are still thriving and you can too.
I love that you have such a great provider! I am currently on the way to what is likely a narcolepsy diagnosis, and my nurse practitioner is the same way. There is a pulmonologist that is the actual doctor over her, and hes the one who scored my sleep study and does the analysis on my lab work, but sjes the only one Ive actually had appointments with. She has walked me through each result step by step, answered any questions, and is the only provider I have had who walked into an appointment prepared with answers to questions I might have. For example, my last appointment, we started a new medication, Nuvigil, and as she was talking about how she thought that was the best course to try first, she said "oh, and I ran the report already with your other meds and there are no conflicts but both can cause this symptom, so you may need to keep an eye out and then separate the times you take these two if it causes issues." Every time Ive seen my GP and we are changing meds, I will ask how it interacts with my other meds, and hes said "let me check" and ran the report right there. She not only did it ahead of time, but also made me aware of a potential issue that isnt flagged in drug interaction reports.
As someone who has been living with a Lupus diagnosis since I was a teen (for like 20 yrs now, but had it long before I was diagnosed) and I suspected you might've had it - so welcome to the "club" (the club no one WANTS to join 😅). Like you, I have had it for a long time... and I have had a bumpy road, but it could always be worse! Lupus isn't the end of the world, I promise (it does suck, though...) If you have any questions, I would ve happy to help if you're interested... 💜
The criteria for diagnosing lupus has changed in those 10 years as well as the testing they do to determine what is going on. That could have something to do with no being diagnosed the first time. As a fellow lupie here, take your meds and wear your sunscreen! Also, be your own advocate. You will probably have to explain things to quite a few doctors throughout your journey. I had to tell an ER doc that my medicine had a contraindication with something they were trying to give me. 😅
Yes, self advocacy is crucial with AI and CI in general! So important to learn about your meds and diagnoses bc it's not an automatic given that other non-rheum docs will immediately know how to proceed. I saw my PCP the other day and was showing her my rheum labs and kinda getting her up to speed on what's been going on, and she straight up told me that rheumatology and hem/onc are two specialties that she does not know a ton about - hence why we have specialists I suppose lol.
I am sorry to hear about your Lupus diagnosis but it is nice to always have a diagnosis. The unknown is so frustrating. I am an autoimmune and chronic illness warrior as well. We are here for you and understand the good and bad days. You are amazing and keep trying to remain upbeat
I’m so sorry you were diagnosed with Lupus BUT I agree that there’s more positive than negative in it. Now at least you know why you feel the way you do, what is causing your symptoms, and you were able to start treatment. When the new meds kick in and you start feeling better I bet it’ll be easier to cope. I’m super excited for you to get some relief from all that pain and fatigue. You deserve to feel good! Also can’t wait for advent calendar season and ALL of your HONEST opinions! And I sincerely hope lil Tater can also get some relief from his seizures and allergies very soon. ❤ 🤗
This is such a positive way to view things. A diagnosis does not give you an illness, you had the illness and now it has a name, doctors, and treatments
So glad to hear that the staff at your rheumatology visit gave you a very thorough explanation of your labs. It’s honestly not that common to get good information out of the time in any doctors office. Regardless of her position in the office ( doctor, nurse or other); she is amazing for giving this diagnosis the attention it deserves. ❤
I said in the last video the ana was the same as mine and I was diagnosed with SLE lupus almost a year ago finally after telling multiple Drs for like 12 years that something was wrong with me and they just fed me pain meds which caused me to turn my world upside down several years ago no more of those meds for me cuz thankfully my now primary care Dr actually listened to me and paid attention to things and said we're doing autoimmune screenings and bam a few days later I get the call that it's SLE lupus... I immediately freaked out panicked and googled all about it but yep it all makes sense now why I feel like I do and man did it make my depression go through the roof too. I'm so glad you have answers now and are finally taking care of yourself girl ❤
i hope you will feel better in no time with the right meds Alexandria! your videos have given me company and comfort for years and i truly wish the best for you 💞
Having a diagnosis is really a relief, it takes time to come to terms with it. I'm glad you have been advocating for yourself! You have inspired me to be more assertive with my doctor in requesting tests. I love your honesty in the advent calendars. If someone doesn't get that, it's their issue, not yours! Don't give them any of your energy. Take care of yourself!
Mine did too. I live with chronic illness & have been going through cancer for the last 8 yrs. Food plays a SIGNIFICANT role in our health & with education you can learn ways to help yourself holistically.
Like others have said try to keep your stress levels down, nothing puts me in a flare quicker then stress. The Autoimmune family, we are here too lend you our support. Keep being you and don't apologize for nothing.
Alex ...remember Tater is going through some big stressful changes right now with the move...and going back and forth from the old home ot the new...this can cause more seizures and worse ones just due to stress...if you remember he had more seizures around Christmas time with all the changes that went on with your decorating...so be mindful of the changes in his life that could stress him out
My cousin was diagnosed with lupus at 17 due to a serious illness that landed her in the hospital for 2 weeks. I am so glad you found your answer. Knowledge is power and being able to put a name to a condition is really helpful and yes usually a relief that someone believes you and knows what is wrong.
You are truly a beautiful, wonderful, genuine person! Never listen to the negative people. Your followers love your honesty! Take care of yourself and your fur babies❤
That exactly why I love your channel. That you say like it is to your viewers. 🐾🌻😀 That and your humor and you being real and straight forward way when you talk to us!
Alex, you got this. Getting the diagnosis is really half the battle. I can imagine the stress you're feeling right now. I know you're going to be an inspiration for others with lupus. Sending good thoughts and prayers your way❤
I love how you're honest with advent calendars! I've gotten a variety in the past and like you said if I'm paying the price I expect to see it and some are great and many are not so. I think those who don't enjoy the honesty shouldn't watch then. Love how you're always true to yourself
You are allowed to be sad, you AREallowed to be sad, let it out, go easy on yourself. I’m so glad you finally got your diagnosis, I find that really helps me because then you can move on and start trying to get treatment All my love and prayers, you’re going to be ok God willing❤❤❤
Omg my heart goes out to you. I've been a rheumatology patient since 2017, I was first tested for Lupus but my markers were not 100% aligned for that so I got diagnosed with Rheumatoid arthritis but a bunch of meds, years and other tests later It turns out its dermatomyositis. I think the Dr you saw in 2014 should have done further tests and still started you on treatment because you definitely met the criteria for an autoimmune illness and lab work sometimes can be unreliable. The journey ahead will be hard but definitely manageable, the hardest part is getting a diagnosis tbh
Agree that it sounds like treatment should have begun years ago. Hydroxychloroquine is typically the first line med (along with methotrexate) tried in even suspected AI cases. With my RA being pretty severe, MTX/Humira combo did little to nothing so I'm now doing daily injections of Kineret. They helped tremendously for a while, but now I'm starting to see an uptick in inflammation markers and such again, unfortunately. So important to begin treatment ASAP!
@spinstercatlady Yeah, MTX gets pescribed to basically everyone if they meet basic criteria for autoimmune issues and I was surprised they didn't schedule her for a followup test. I did MTX and Humira for a bit when they thought I had Psoriatic arthritis, the MTX got switched to injections because I didn't tolerate orally then I failed the injections as well because the stomach pain didn't stop, now I take Leflunomide and predinisolone
Almost 2 years ago I was diagnosed with Rheumatoid Arthritis at 33. It’s hard to accept when you get a big diagnosis. Remember to be gentle with yourself! Give yourself grace. If there’s are days you can’t do what you were doing before be kind to yourself!! Sending love your way🖤🖤🖤
I am right here with you. Took my Rhumatolagist 2 years to admit I had psoriatic arthritis ( my dermatologist and oral surgeon said it and told me to see a Rhumatolagist). Then 2 years after that have psoriatic arthritis, rheumatoid arthritis. Had to switch doctors and the new doc calls me after the 2nd round of blood work to tell me I have lupus. Hopefully your meds combo works for you. If not don’t be afraid to tell them. Hugs to you. Loved that Vogue calendar
Autoimmune Issues can definitely sit you down when you want to stand tall. Always trust your body. Rest when you’re weary, advocate for yourself always. I was Dx with MS on Christmas Eve 2018. I’m 45 now. I went through a period of confusion and sadness as well about the diagnosis but once I educated myself and my care team and I found what worked for me, I felt better about things. Love to you and all my Autoimmune family. Rooting for you sis.
My mom was diagnosed in her early 20s. A few of my aunts have it as well. I definitely didn't understand it growing up, but as an adult I understand now. She unfortunately passed away at 47. It attacked her liver and then her other organs. She has been gone 20 years now, but I am so glad that there has been so much research done, and treatment improvements. Please take care of your health first and foremost. People will understand or they just won't. I didn't end up with it, but have diabetes, fibromyalgia and thyroid issues and people just don't understand what is happening on the inside. We have to make it normal and educate people to understand. I'm so glad your being open about it and having your platform to educate as you learn, I'm so grateful for you putting yourself out there.❤
your honesty is refreshing. I don't want to watch someone unboxing a huge corporate advent calendar and say everything is amazing (when it's not) and completely disregard how much they pay for it. Also I hope you're able to feel better now that you've received your diagnosis ❤
I have wondered if you had lupus for a few years- I have it - diagnosed at 32. Praying for you- and know this- you will have a full wonderful life! Learn a lot- do everything you can and ALSO don’t live in your disease- I know so many women that are only their Lupus. You got this!!
Truly wishing you nothing but the best! I hope this diagnosis has brought you some peace. I'm learning a lot from you about lupus itself, the importance of checking in with your body and health, and the grace with which you've been braving these challenges.
So glad you were able to get diagnosed and figure out a plan with your rheum going forward! I remember several years ago, commenting that a LOOOT of your symptoms seemed very much autoimmune/Lupus related. I was diagnosed with RA and APD a few years after getting very sick with reactive EBV/mono in 2019, and so many of my symptoms were/are very similar to yours. Autoimmune diseases can be very tricky to diagnose bc they can often be brewing for years before becoming full blown enough to show up on labs. Getting diagnosed is never fun, but it can be very validating to know that there was indeed a reason for all the seemingly "random" symptoms all along. Will be praying for you, and following along ❤
Sorry to hear that you have joined the lupus warriors. I know when I got diagnosed 7 years ago it was a tough time. But one of the most important things is to not forget to take care of your mental health. Sometimes we work so hard taking care of our physical self to fight off flares that it takes a toll on our mental well-being. And it really helps to know you're not alone.
Hey guys! I wanted to finally share with you guys my diagnosis. I have known now for about a month but it was a little difficult for me to film this video and finally get it posted for some reason. I am doing my best to stay upbeat and positive about the situation! I have been feeling sick for years with no idea what was going on with me, but now I have a name to put to it and hopefully a way to mange my symptoms! The thought of not being in pain/uncomfortable all the time or dealing with the crushing fatigue is really exciting and I am hopeful I will start feeling better! Love ya💖
I have RA border line Lupus and also Fibermialgea. Sorry if that is spelled wrong. So I know exactly how you have been feeling. I hope you get all the medical help you need. This is a long journey.❤
Sometimes with big news you just need time to reorder your own thoughts and feelings before you're ready to really share it out into the world. I've felt that way about a few of my chronic illness struggles, I just didn't want to be processing it out loud with other people until I was ready. That is pretty normal! And so is not always feeling positive, so don't worry about having bad mental health days and just remember that all you can do is your best on any given day. Here's to hoping that your doctors find a good treatment protocol that helps you feel better quickly!
Sending you healing energy and light and love 🫶
I am sorry to hear this. We can all be broken together. I have MS. You got this! ❤
I’m so glad you finally have absolution 🥰 hope you’re doing well ❤
Girrrrlll, I was diagnosed with Lupus at 12yrs old. My mother passed it to me. I was WONDERING this the whole time. I’m so sorry. But I’ve got 28yrs of SLE under my belt. I can answer anything I can for you. I’ll be 40 in November. I became legally disabled at 23yrs old. Then even more diagnoses. If I could go back and talk to myself during my early diagnosis I would tell myself, let yourself rest, if friends don’t understand-screw em, don’t over do yourself or you’ll be in a worse flare. Do not guilt yourself for being sick. Love yourself, stay away from stress- huge trigger for flares. You’ve got this. ❤
Great advice! Stress is horrible for AI. Anytime I go through a lot of stress/worry, I can pretty much guarantee that a flare-up will be in my near future.
It’s people like you, that gives me hope for this world. Your kindness is infectious!! I don’t know you, but I just hope you know that being positive , understanding , caring and supportive is making more of an impact than you think. Thank you for shining your light on other’s. YOU ARE ENOUGH!!!!♥️♥️♥️
💜💜💜You're a Strong Woman 💜💜💜
I love this the world is lucky to have you! ❤
My mom was diagnosed when I was 9 and it runs heavily in our female line! I have so many symptoms but I have never had health insurance and can’t afford testing/treatments. Nobody ever understands why I’m always sick and tired 😞
Anyone who says you're "ungratefull " over the advent calendars doesn't know you! You do you, it's why we love you.
Also she’s paying for them, so of course she has every right to say “this sucks” or “this is amazing” I appreciate when people are honest
@@boogiebear3095 Same here and I would give my honest opinion too.
I love your honesty, sometimes I think you might stroke out...
ANYONE saying expecting value for what you pay for is being ungrateful is the type of fool that keeps companies spewing garbage every year.
Seriously! And she's the most positive supposedly "negative" reviewer I've ever seen. Like she's never mean and makes good points about value. Those negative comments towards her videos honestly make me angry!
I have lupus. It’s a wild ride. I’ve been diagnosed now for 12 years. It’s a delicate balance to get it right. It takes time. Be good to yourself and be patient with yourself. No one is ever an expert in lupus because it’s an ever changing illness that is different for every person that has it. My lupus is not your lupus. You will learn to manage it, you will learn to adapt, and you will learn to thrive. Take your meds, hydrate, rest, and be so gentle with yourself right now. You can do this. There is a whole community of us that have your back. We love you.
Exactly my RA isn’t your RA. People think because you have that label that everyone is the same. Love your message! ❤
@@JustHarperGrayI absolutely agree!
This!!!!! Perfectly explained 💜💜💜
Hang in there girl...I was diagnosed with Multiple Sclerosis in 1971....worked hard to learn how to walk again...am 77 now, still walking, use walking sticks when out in public, so I don't faceplant myself on the sidewalks. You have to learn what works for you, what you read may or may not help, but you be you. I love your videos...they bring me joy!
I'm 50 2003 I was diagnosed with MS
I’m 39 and 4 years ago I was diagnosed with MS ❤
I was diagnosed with MS 3 years ago and I’m 45 but the first neurologist about 10 years ago wouldn’t diagnose me because I only had 3 lesions. But we all need to stay strong and live our lives to the fullest 💜
MS sister here , you and I said almost the exact same thing ❤
🧡
I 100% appreciate you not taking sponsored advent calendars! This will guarantee that you’re being genuine in your review!
I love that she is always honest in her reviews!!❤️
@shellykozun3813 I know she would be honest" even if it was ALL free!! Get ur Fred stuff alex !! Why not. Just stay humble and real with us !! Love N Hugs **
People complaining that you're telling the truth are idiots. I watch your channel BECAUSE you tell the truth, and the fact that you purchase the calendars gives you the right to complain if it's filled with crap. Now to your health, it's ridiculous that it took ten years to be diagnosed. I have fibromyalgia, and the symptoms are similar. It took years to be diagnosed with me too. I'm going to keep you in my prayers, because it really does help!! I hope you feel better really soon, and that it won't take as long as normal for the meds to kick in! 💕❤💙💜💛
The best part of advent calendar season is seeing you react to the *audacity* of so many of these companies with their terrible advent calendars and be impressed with the ones who actually try to do a good job! You are doing a service to humankind with those reviews!!
Yes! It is good to find out which ones are actually good, but I get way more excited about the bad ones! I know there will be some really fun reactions and a cathartic rant. High quality content to me.
Another autoimmune and chronic illness warrior here. We’re all here to support you. ❤❤❤
Same here 😊
Crohn’s warrior here and I agree with the others we are here to support you! 💜💜💜💜
Same here RA but I often have the other Lupus symptoms. Auto immune disease is not nice but manageable. Half the battle is knowing what is going on. I have learned to listen to my body. I rest when I feel the need. I've had it for over 20 years and yes it is not great but I'm able to live my life. Okay I can't trek and run like I used to but I'm 63 so there is that. 😂😂😂 onward and upward warriors!!
Fibromyalgia warrior here. We are a good group girl, your in good company🎉 Autoimmune warriors unite!
I’m with you all, RA, MS, fibro and Trigeminal Neuralgia.
I appreciate your criticism of the advent calendars that are ripping people off. Your humor and rants are entertaining, and it's stopped me from buying certain calendars. Please don't stop
I agree! Don't let people's comments affect YOUR comments, Alexandria!! You ALWAYS give honest reviews, and that's what we all appreciate!! WE LOVE YOU, GIRL!!! ❤
I can relate to the "at least it's not lupus". My neurologist told me multiple times "it's not MS". 3 month later, a spinal tap revealed that it WAS MS.
I found that knowing what it is helps a lot.
That jumped on me once. I ran it off in the name of Jesus.
Same. After multiple doctors and ER trips, they finally did an MRI and said “we think we see something “. Got admitted for a steroid round and a spinal tap, which confirmed MS. I had just turned 28.
Iatrogenic: means the Doctor and the medicine caused the problem. Of course the allergy meds caused the seizures. Shame on those Docs
@@cgelmore488 What the fuck
I was diagnosed with everything under the son it stopped at MS
Hi! Brain injury here. Think of a "diagnosis" not as a definition of you but a framework that you can work within. Big diagnosis can be overwhelming, it's like you just figured out your pant size and now you can shop and always get exactly what fits. Join a few online support groups to get tips and support. You got this, your how to operate Alex guide just got another chapter. Don't let it define, let it guide you. Hugs!
This. Exactly. She very much needs to hear this. Thank you for your comment.
That's such a perfect way of putting it! ❤
That's exactly how I felt when my son was diagnosed with Autism. It was, "great! We have a diagnosis! Now how can we work with this?"
Chronic illness people unite! You’ve got this ❤
umm people saying your ungrateful IS WILD. you are so genuine and sweet. dont listen to them. ps youre my comfort youtuber. much love
Girl, don’t apologize for your brand: you’re not negative. I feel like you are so hopeful for stuff, you give them the benefit of the doubt every year. It’s obvious that advent calendars ought to provide some value (especially if they’re for gifting or something) and the almost never bring the value. We love what you do or we wouldn’t be here. Keep your chin up over your diagnosis, it’s ok to feel overwhelmed at the same time as you feel relieved to know more. Keep it up!
Welcome to the Spoonies ❤. Chronic autoimmune disease is a struggle but there is always someone who understands. We're here for you!
😂I also welcomed her to the spoonies 🫶we are a welcoming bunch for being so ill. We really do spread the love in our pain...howdy fellow Spoonie,I hope today you have many spoons to give ❤
MS warrior here! Spoonies unite! ❤to you all.
@@MrsMcGwireI have an autoimmune liver disease myself. The fatigue is real. I never heard of spoonies before.
omg i cant believe i forgot to mention spoons in my comment! 🥄🥄🥄🥄🥄🥄
I’ve never heard of spoonies either. As someone with Crohns and RA, the fatigue and constant pain sucks. I hope everyone here who’s suffering is able to find some relief 😊
Watching you open advent calendars and expose corporate greed is my bread and butter!!!
Don’t be scared!! Don’t let Lupus take over your life! You are Alexandria first and foremost!
As a healthcare worker, I can tell you that Lupus treatments have come a long way. You got this! And we will always be here for you. On another note, I find you are so positive with the advent calendars and so polite if they are bad. I wouldn't be nearly as sweet as you. If you spend, $200 and you get a compact mirror, you'd be pissed off, right? I love your advent unboxings. I also love advent calendars and I am anxiously awaiting the Harrod's Fragrance one. TFS!
True, you are so nice about the appalling advent calendars. And so pleased when you get a good one. You are a delight to watch.
You're in a unique position where you can experience a plethora of advent calendars because it's the "job" you've chosen. I don't see an issue with you being "negative" about them because a lot of them are pure garbage. The average consumer will have a limited budget to spend on something like that and personally I would be so disappointed if I spent a ton of money on an advent calendar and got stickers, key chains, and hair ties. You're spending your money on them, giving an honest review, and hopefully protecting the average consumer from buying a huge disappointment.
People whining about your calendar reviews simply don’t get it. It IS corporate greed and they need to be called out, and you have a voice to do that. I will say this year look into cool and different ones like from etsy shops. It’d be awesome to see some indy brands too. But i love all your videos, please dont stop doing what you do.
Oh and BTW, I really like how you tell it like it is and not sucking up to those advant calendar companies. Your integrity is very appreciated.
Agreed. I wonder if a lot of those comments are from misogynists. I’ve noticed (esp in politics, but everywhere really) that men (and some women) called ONLY women “ungrateful”, as if women are lucky to make any choices or see any financial/career success. I have no studies to prove this, but I feel like it’s worth pointing out
Having a diagnosis can be so freeing. Having an answer can be a relief. When I was diagnosed with cancer I was like..oh, that totally makes sense.
I noticed your butterfly right away at the beginning of the video.
Same here. They checked me for every disease. They started to say I was a hypochondriac. I had so much abdominal pain. Stage 3 ovarian cancer
@dsfv100 ugh hate when docs assume it's just anxiety simply bc they can't find the problem at that time. Most of us know our bodies pretty well, and we know when something absolutely is not right/going sideways.
@@dsfv100oh my god i’m so sorry, of course it was ovarian as well, they never pay attention to womens problems it’s infuriating, took me years to get diagnosed with pcos and endo, all they kept saying was “go on the pill” or “eat healthy and work out”, it is not so simple as that. being a woman is a burden sometimes, especially with healthcare.
In regards to Tator: "You do the best you can with the information you have." All the information you had at the time was that cytopoint would not affect his seizures and it was a treatment option that would help your poor, itchy boy. Don't feel bad about doing what you thought was best for him at the time, especially since it was recommended by the vet 💞
My boyfriend has lupus and I've got a different autoimmune disease as well! As for lupus, he was diagnosed when he was in college. The fatigue is real, the body aches are legit, and its a difficult autoimmune disease to manage but you got this!! Listen to your body. With autoimmune nothing is black and white, whats true for one person may not be for someone else, so work with your body and work with a doctor you really trust. ♥️
I’m so sorry Alexandria, but I was born with complicated congenital heart disease and had my first open heart surgery at 7 years old and it was a 50-50% of survival as it was an experimental procedure. I’ve done so much that people didn’t think I would able to do, I’ve even worked in ski results in France (I live in the UK). I’ve got a 25 year old son (my generation was the first generation with my condition that have been able to have kids), I’ve had two more heart surgeries and now a pacemaker. I’m almost 60, my parents were told if I didn’t have the surgery at 7 I would probably in a wheelchair for life, still don’t need one. Just keep going Sweetie and keep fighting their expectations.❤❤❤
I was afraid that Lupus might be your diagnosis but at least now you know and can be treated properly. I'm really proud of you for pushing to get it all figured out though, that does take courage.
For Wren- make sure they are also getting an x-ray of his neck. Smaller dogs can get a cough related to a tracheal collapse (when the cartilage around the trachea weakens). It can be worse after activity, excitement or if they have a leash attached to a collar and they pull on it.
This! I am a groomer and i worked for a vet for years and seen a lot of coughs caused by tracheal collapse.
Thank you for this comment!
That’s what happened to my Pomchi! He had the cough, collapsed treachea, and ended up also having a congenial heart defect. When I adopted him I was told he was 5 - turns out he was actually 10. He was diagnosed 2 years after I got him and put on meds I couldn’t afford, so luckily my parents stepped up and took him in and paid for everything. He’s 16 now and still a cheerful lil guy who loves life. So grateful it’s not always a death sentence and they can still live a happy life.
Yup, my aunt’s Pomeranian has it.
I am sorry to hear about your diagnosis, Alexandria, but as someone who has dealt with lupus since the mid 1990’s, I can honestly tell you that it is not a life sentence, in fact, my lupus (sle) has been in remission for the last 5 years & I have never felt better (I will be 60 years old in November). I actually got better when I went off the steroids & other medications. I felt the medications were making me sicker. This being said though, please listen to your doctor, but more importantly, listen to your body. A good rheumatologist is key & it sounds like you have one. It also sounds like you have a lot of support. Reading your comment section, it seems that you have a lot of subscribers who have lupus, so please reach out to us with questions & concerns. You are loved & I am praying for you. 🙏 xo
I'm very grateful that you've shared your experience. Thank you.
I was have Fibromyalgia and Rheumatoid arthritis and I wondered about Lupus for you, but I want you to know it's okay to be sad about it. It's okay to be sad, and angry, and to grieve. Having a chronic illness is very upsetting and hard to come to terns with even if you've been struggling with symptoms for a long time before diagnosis. I started having fibro symptoms at 14 was diagnosed at 22. Came down with RA symptoms in 2016 diagnosed 2018. Each time there was a process of grieving and anger and I still struggle with that sometimes. One thing I will say is dont wait to get assistive devices. Pillows, cutlery, speciality knives, etc. It can feel a bit embarrassing at first but you don't deserve to be in pain when you don't have to be
I appreciate your honesty! Please don't ever change. You talk like you're talking to people you really know, not putting on a persona.
I was just recently diagnosed with lupus 2 years ago. Still trying to find the best treatment for me. Don’t let it take you down but try to rest when you can. ❤
I have SLE. Was diagnosed in 1998, I am currently in remission. My grandmother had it. I have experienced and been in the SLE world since I was 13. I’m also a
retired medical professional. Reach out if you need someone to talk to. It’s scary at first, but you can live with it a long and happy life.
Have the vet check Wren for a collapsed trachea...🙏🙏🙏🙏 I had a pug diagnosed with one ❤️. I'm sorry about lupus & poor Tater. I'll keep all of you in my prayers
So relatable. People think when you get a chronic illness diagnosis that you break down with immediate dread. But honestly bc it takes so long it's a relief to know it's not just in your head. It feels good to know it has a name and you're not alone.
You are not complaining or ungrateful with advent calendars. You are honest and looking out for the interest of your supporters and the public. It's why l only had to watch a few of your uploads to decide to subscribe and stick around. You are appreciated xxxx
My mom was diagnosed with Lupus and rheumatoid arthritis when she was 30. It’s totally manageable. Don’t let this get you down. You got this!
With the plaquenil (aka hydroxychloroquin), make sure that you get your eyes examined regularly! It helped me for MANY years, but then, I found out that I had a really rare complication from it (retinal toxicity). It's important to just keep an EYE on it (pun intended 😉)!
My Rheumatologist requires the eye exam every year to renew my Plaquenil prescription. Part of it is a field of vision test because it can affect your peripheral vision. The ophthalmologist also looks at your retina to make sure you don’t have issue you have. My doctor said he’s never seen a case of it, but you’re proof it does happen.
@SueLW65 unfortunately, yup, I am, lol! I swear I get ALLLLL of the rare stuff and the worst of the possible side effects for everything, lol 🤦♀️
I'm always glad to hear about rheumatologists taking it seriously - and mine did too, actually! I had been getting tested every 6 months to a year, but somehow, it still happened... 🤷🏻♀️ Now I am still tested often and have an ophthalmologist who specializes in it who follows me (added her to my long list of specialists - I joke that I have one of each except for a proctologist at this point!!! 😂😂😂😂). Stay vigilant!
I hope your lupus is well controlled?
But yeah, this really screwed up my vision... I have almost zero night vision now, which really sucks! But the plaquenil really helped, in conjunction with my cytoxan (cyclophosphomide) and Imuran... now I'm on Cell-Cept and a ton of other stuff.
My journey with all of my autoimmune issues and everything else has been a loooooong one, as I got sick/started showing symptoms around 11/12 and was diagnosed with juvenile arthritis at the time and "asthma" (which turned out to actually be "pseudo-asthma" caused by pulmonary vasculitis from my lupus).
Then, at around 21, I was finally diagnosed (which was easy to do as it was attacking pretty much every organ/system and joint in my body by then).
Since then, I have had more than my fair share of struggles, ofc, but it also made me and my family become extremely close and I have had 2 AMAZING service dogs in my life who helped me through it, too!
I also have an autoimmune disorder without a diagnosis. I hope you don’t let this discourage you too much and remember you are NOT alone. Knowing this can help your doctors help you manage symptoms and feel the best you that you can be. We love you Alexandria and we are here with you for the journey.
Me too. My previous doctor thought it was very likely that I had (have?) lupus. It was amazing to finally be able to put a name to the issue after all these years, but that doctors has since left the area.
My current doctor thinks it is probably porferia. Having the theory change felt like a rug being pulled out from under me, and I don't why. I suppose it's related to all those years not knowing.
But again, still yet to be officially diagnosed with anything, just some people in coats with strong opinions. We shall see. Wishing you all the best.
For me the first year was the worst. You mourn the person you were going to be. My 9 year relationship ended because he couldn’t handle it. Not saying that will happen to everyone but it can happen. It’s rough and it’s okay to cry and feel bad for yourself. Sending love your way. ❤
You cannot beat yourself up about not doing something for your health when previous providers cleared you. You can only look back and say okay. I don’t have SLE, but fibromyalgia and went well over a decade before finally being diagnosed. For nearly another decade after my diagnosis I was angry. Angry at myself and angry at the doctor I had when my symptoms started. For years I lived in anger and wallowed in pity for myself. What I should have done and what I encourage other spoonies to do is take it one day at a time and sure get upset, but remind yourself that you can’t fix the past, but only move forward. Thank you for sharing something so life changing and difficult. You are an inspiration to me.
I received a diagnosis of Ehler Danlos Syndrome. A genetic condition. So I have had this my whole life. And I'm 55, So I really get your feelings. I live in Sweden. I absolutely understand the long way to get a diagnosis. And for many cases to get the right treatment. I hope you will feel better soon. And you can always google and find out more about it. And find other people with the same illness. Wishing you all the best! ❤
I see sooo many people these days talking about being diagnosed with hEDS, so I'm guessing it must've been something that doctors didn't used to test for much?
Fellow late diagnosis zebra!!! 🎉 dx at 45!
@@spinstercatladyyes. It was only brought in as something drs knew about better than “so rare you’ll never see” in the last 10 years.
It wasn’t added to the diagnosis manual until something like 1998, so us Gen-X who have (or suspect we have) it, went our entire childhood without anything TO diagnose. I remember reading an article in a magazine about it when I was in college and showing it to my mom saying “I think this is what I have!” All the parlor tricks were fun as a kid but are so painful now. Being able to do the splits as a fat kid made me feel special, but I didn’t know I should protect my joints and I was doing so much damage.
@@vj4195 I was dancing ballet from 5 years old until I was almost 13 years old. I was my ballet teacher's pet. And got to dance 🩰 in these and with senior guys in dance show's. I really got hurt many times. And I have ADHD. I was a really wild kid. I was skateboarding. I climbed on absolutely anything. Looking back at all the things I did. I'm surprised it didn't end up much worse. 🌻🥴
My mom has lupus and has had it for years. It’s struggle and an adjustment, but you’re doing great ❤ I wish the best for you and I’m sending you lots of love and prayers ❤
I’ve learned over my 68 years that we need to advocate for ourselves. I’m glad that you finally have a diagnosis and hope that you find a good health care provider that listens to you and helps you to understand your symptoms and options.
You are such a beautiful light here on CZcams and I love watching all of your videos.
Please be kind to yourself and take each day as it comes.🙏🏻
Chronic illness sucks, but getting that diagnosis after SO SO LONG is so satisfying, speaking as someone who kept seeing multiple doctors for years over the same issues and they all drew a blank. It took me almost losing my eyesight to finally get that diagnosis.
I was diagnosed with rheumatoid arthritis at age 12. (They originally thought Lupus) I’m now almost 54. It’s been a long road. They have lots of medication they didn’t necessarily have for me in the early 80’s. So that’s a good thing. I wish you all the best Alexandria. 🙏🏼🙂💗👍
Plaquenil/Hydroxychloroquine has been a life saver to my lupus. My arthritis disappeared! I got back on it a year ago and I’ve felt my best! And lol yes, that’s a rheumatologist for you. Looks at blood work, you kinda got to say what’s bothering you or new symptoms before they disappear. I have SUCH high hopes for you on this medication. But Theres always others.
I was diagnosed with Lupus at age 20 after five years of being sick, misdiagnosed, improperly medicated, and gaslit by doctors who thought it was all in my head. That was 20+ years ago, and I still need to make adjustments in my daily life. My advice is: rest when you need to, slather on the SPF when you go out (even if it's for short periods), and don't overdo OTC pain meds - they cause all other kinds of damage. Thank you for being honest and sharing this with us. ❤️❤️❤️
I have the sister disease to lupus! I’m so sorry you’re going through this! It’s hard living with a chronic illness! Prayers love
If you don't mind my asking what is the sister to lupus? I enjoy learning about these things... I also am disabled, I severed my Sciatic nerve from running away from an abusive boyfriend and there where stairs and I didn't see them bc I was looking back and bam I fell hard on my butt and it just snapped my nerve honey my leg swelled up like a balloon... I was in the hospital for three weeks and came a hair of losing my leg... Thank God I didn't... So that's my story of being in pain the rest of my life....
@@terryblevins2516 so sorry to hear that but glad you made it out! I have vgkc encephalitis. It’s a super rare autoimmune disease. They call it the sister disease to lupus only bc it’s closely related in symptoms. Unfortunately with mine there is currently no known treatments.
Thank you for sharing this information.
@@miniladybug you’re welcome,love!
I was diagnosed with RA at 14 and Lupus at age 30. Have I got stories for days! I am stubborn, bossy, determined with a wicked dark sense of humour which has helped!! “Welcome” to our world!
I have an auto immune disease, and it's tough, but you're tougher 💪 you've got this! Xxx
Advent calendars feed of FOMO and the curiosity of consumers. I literally found your channel because i was researching Ipsy back in the day to see if it was worth getting. You’re providing such informative content for those who care about value gained from these “surprise” boxes. I appreciate your honest opinion because you’ve been doing this for a file and you know what’s up!
Im disabled (mainly from stage 4 Endometriosis and Cyclic Vomiting Syndrome) from chronic conditions, so my heart goes out to you ❤ sending you all the love, hugs, and all my extra spoons🫶
I live with Fibromyalgia and it has taken its toll on my life...meds to manage pain etc...now I have a new problem... there are days I just want to cry...but I do what I can and push thru...so hang in there Love...it will get better...❤❤❤
None of us wants our pets to get sick and it seems that you are doing everything you can to keep them healthy and happy. But also, I believe that one of the most important lessons they gift us, is learning to deal with death, loss and grief. And they’ll wait for us on the other side of the bridge 🥰😇
I love hearing you say "i told my husband i wanted to get tested" having your person by your side during chronic illness is everything. ❤as a fellow Spoonie,i see you and im holding space for your journey. Autoimmune conditions are a journey.🦋 You've got this, especially with your husband by your side❤
This is so crazy. I’m going down the path right now of getting diagnosed with Lupus. I have my first Rheum appointment on rhe 7th after having a 320 ANA. Just know you’re not alone and thank you for making me feel less alone.
Girl I’m so glad u do hold them accountable we pay a lot to buy these boxes through the years . I was diagnosed with fibromyalgia and it’s hard not to get down but you adjust your life to changes nearly 4 years ago I had cancer once surviving that everything else seems small good luck 🍀 hang in there it’s going to be ok
Im glad you persevered to get your diagnosis. Rooting for you!
On the calendar front - don't ever change. i'm pretty sure 98% of us are here specifically because you are honest and unafraid of calling out these multi million dollar scam companies. You are our consumer champion queen! ha (also for your charm, humour and great company of course).
I know I'm only one voice, but I love how brutally honest you are with advent calendars. You're also very entertaining. 😂
I'm not sure what you're supposed to be grateful for when you're spending a ton on calendars that aren't worth the box they come in.
I'm happy you got your diagnosis. That's going to lead to a level of peace for you.
I love the fur babies and I'm sending them positive energy for health.
I love your channel.
Oh no... but finally a diagnosis. Now, it's time to make the lifestyle changes to put it in remission. My bff, Tracy Lynn, has Lupus. She does a lot with her diet. Best of luck to you. You got this!! ❤
I am so sorry. I was diagnosed with lupus 7 years ago. That diagnosis came at least 14 years after my first symptoms. I am doing well now and I hope you will be, too!
I love that you tear apart the advent calendars, and I bought one BECAUSE you reviewed it, and another one just because my daughter wanted to play CZcams reviewer. It was a lot of fun and I hope I can again soon.
It must feel great to finally have a name for how you've been feeling. I truly hope and pray you get relief from the meds sooner rather than later. I'm praying for ya, Girl. Thank you for sharing with us. That's really brave. As for the advent calendars, it seems to me that the ones from Europe (especially England) seem to be so much better, BUT the shipping is insane. I love watching you open anything. I love your honest opinions and rants. Please don't change.
The extent of my knowledge of lupus is that it's an autoimmune disease, Selena Gomez, Toni Braxton, and Seal have it, and various forms of lupus affect various body parts and/or organs. For example, Toni's lupus affects her heart whereas Seal's lupus is responsible for his facial scarring.
But there's a silver lining here. Every one of them are still making it and are still thriving and you can too.
Lady Gaga had an aunt with it too, she named her album JoAnn, after her.
This is beautifully worded xxx
I love that you have such a great provider! I am currently on the way to what is likely a narcolepsy diagnosis, and my nurse practitioner is the same way. There is a pulmonologist that is the actual doctor over her, and hes the one who scored my sleep study and does the analysis on my lab work, but sjes the only one Ive actually had appointments with. She has walked me through each result step by step, answered any questions, and is the only provider I have had who walked into an appointment prepared with answers to questions I might have. For example, my last appointment, we started a new medication, Nuvigil, and as she was talking about how she thought that was the best course to try first, she said "oh, and I ran the report already with your other meds and there are no conflicts but both can cause this symptom, so you may need to keep an eye out and then separate the times you take these two if it causes issues." Every time Ive seen my GP and we are changing meds, I will ask how it interacts with my other meds, and hes said "let me check" and ran the report right there. She not only did it ahead of time, but also made me aware of a potential issue that isnt flagged in drug interaction reports.
As someone who has been living with a Lupus diagnosis since I was a teen (for like 20 yrs now, but had it long before I was diagnosed) and I suspected you might've had it - so welcome to the "club" (the club no one WANTS to join 😅).
Like you, I have had it for a long time... and I have had a bumpy road, but it could always be worse! Lupus isn't the end of the world, I promise (it does suck, though...)
If you have any questions, I would ve happy to help if you're interested... 💜
I for one like seeing you open different thing advent calendars, not just makeup. And you being a harsh critic is actually quite helpful.
The criteria for diagnosing lupus has changed in those 10 years as well as the testing they do to determine what is going on. That could have something to do with no being diagnosed the first time.
As a fellow lupie here, take your meds and wear your sunscreen! Also, be your own advocate. You will probably have to explain things to quite a few doctors throughout your journey. I had to tell an ER doc that my medicine had a contraindication with something they were trying to give me. 😅
Yes, self advocacy is crucial with AI and CI in general! So important to learn about your meds and diagnoses bc it's not an automatic given that other non-rheum docs will immediately know how to proceed. I saw my PCP the other day and was showing her my rheum labs and kinda getting her up to speed on what's been going on, and she straight up told me that rheumatology and hem/onc are two specialties that she does not know a ton about - hence why we have specialists I suppose lol.
Same with Ehlers Danlos! I waited 35 years. But it didn’t “exist” in the dx circle before that!
I am sorry to hear about your Lupus diagnosis but it is nice to always have a diagnosis. The unknown is so frustrating. I am an autoimmune and chronic illness warrior as well. We are here for you and understand the good and bad days. You are amazing and keep trying to remain upbeat
I’m so sorry you were diagnosed with Lupus BUT I agree that there’s more positive than negative in it. Now at least you know why you feel the way you do, what is causing your symptoms, and you were able to start treatment. When the new meds kick in and you start feeling better I bet it’ll be easier to cope. I’m super excited for you to get some relief from all that pain and fatigue. You deserve to feel good! Also can’t wait for advent calendar season and ALL of your HONEST opinions! And I sincerely hope lil Tater can also get some relief from his seizures and allergies very soon. ❤ 🤗
This is such a positive way to view things. A diagnosis does not give you an illness, you had the illness and now it has a name, doctors, and treatments
You could open an envelope and we would watch. Your'e a dose of happy. I hope you you get back the vibes you give. Wishing you well.
😂😂😂...you are SO RIGHT!!!
So glad to hear that the staff at your rheumatology visit gave you a very thorough explanation of your labs. It’s honestly not that common to get good information out of the time in any doctors office. Regardless of her position in the office ( doctor, nurse or other); she is amazing for giving this diagnosis the attention it deserves. ❤
The people who say you are too negative are not your people. We want you to be you.
I said in the last video the ana was the same as mine and I was diagnosed with SLE lupus almost a year ago finally after telling multiple Drs for like 12 years that something was wrong with me and they just fed me pain meds which caused me to turn my world upside down several years ago no more of those meds for me cuz thankfully my now primary care Dr actually listened to me and paid attention to things and said we're doing autoimmune screenings and bam a few days later I get the call that it's SLE lupus... I immediately freaked out panicked and googled all about it but yep it all makes sense now why I feel like I do and man did it make my depression go through the roof too. I'm so glad you have answers now and are finally taking care of yourself girl ❤
i hope you will feel better in no time with the right meds Alexandria! your videos have given me company and comfort for years and i truly wish the best for you 💞
Having a diagnosis is really a relief, it takes time to come to terms with it. I'm glad you have been advocating for yourself! You have inspired me to be more assertive with my doctor in requesting tests. I love your honesty in the advent calendars. If someone doesn't get that, it's their issue, not yours! Don't give them any of your energy. Take care of yourself!
My heart sank while I read the title
Mine did too. I live with chronic illness & have been going through cancer for the last 8 yrs. Food plays a SIGNIFICANT role in our health & with education you can learn ways to help yourself holistically.
Like others have said try to keep your stress levels down, nothing puts me in a flare quicker then stress. The Autoimmune family, we are here too lend you our support. Keep being you and don't apologize for nothing.
Alex ...remember Tater is going through some big stressful changes right now with the move...and going back and forth from the old home ot the new...this can cause more seizures and worse ones just due to stress...if you remember he had more seizures around Christmas time with all the changes that went on with your decorating...so be mindful of the changes in his life that could stress him out
My cousin was diagnosed with lupus at 17 due to a serious illness that landed her in the hospital for 2 weeks. I am so glad you found your answer. Knowledge is power and being able to put a name to a condition is really helpful and yes usually a relief that someone believes you and knows what is wrong.
Sending you lots of love ❤️
Thank you💖
You are truly a beautiful, wonderful, genuine person! Never listen to the negative people. Your followers love your honesty! Take care of yourself and your fur babies❤
You got this fellow ##Lupuswarrior 💪
That exactly why I love your channel. That you say like it is to your viewers. 🐾🌻😀 That and your humor and you being real and straight forward way when you talk to us!
Alex, you got this. Getting the diagnosis is really half the battle. I can imagine the stress you're feeling right now. I know you're going to be an inspiration for others with lupus. Sending good thoughts and prayers your way❤
I love how you're honest with advent calendars! I've gotten a variety in the past and like you said if I'm paying the price I expect to see it and some are great and many are not so. I think those who don't enjoy the honesty shouldn't watch then. Love how you're always true to yourself
You are allowed to be sad, you AREallowed to be sad, let it out, go easy on yourself.
I’m so glad you finally got your diagnosis, I find that really helps me because then you can move on and start trying to get treatment
All my love and prayers, you’re going to be ok God willing❤❤❤
Omg my heart goes out to you. I've been a rheumatology patient since 2017, I was first tested for Lupus but my markers were not 100% aligned for that so I got diagnosed with Rheumatoid arthritis but a bunch of meds, years and other tests later It turns out its dermatomyositis.
I think the Dr you saw in 2014 should have done further tests and still started you on treatment because you definitely met the criteria for an autoimmune illness and lab work sometimes can be unreliable.
The journey ahead will be hard but definitely manageable, the hardest part is getting a diagnosis tbh
Agree that it sounds like treatment should have begun years ago. Hydroxychloroquine is typically the first line med (along with methotrexate) tried in even suspected AI cases. With my RA being pretty severe, MTX/Humira combo did little to nothing so I'm now doing daily injections of Kineret. They helped tremendously for a while, but now I'm starting to see an uptick in inflammation markers and such again, unfortunately. So important to begin treatment ASAP!
@spinstercatlady Yeah, MTX gets pescribed to basically everyone if they meet basic criteria for autoimmune issues and I was surprised they didn't schedule her for a followup test. I did MTX and Humira for a bit when they thought I had Psoriatic arthritis, the MTX got switched to injections because I didn't tolerate orally then I failed the injections as well because the stomach pain didn't stop, now I take Leflunomide and predinisolone
Almost 2 years ago I was diagnosed with Rheumatoid Arthritis at 33. It’s hard to accept when you get a big diagnosis. Remember to be gentle with yourself! Give yourself grace. If there’s are days you can’t do what you were doing before be kind to yourself!! Sending love your way🖤🖤🖤
I am right here with you. Took my Rhumatolagist 2 years to admit I had psoriatic arthritis ( my dermatologist and oral surgeon said it and told me to see a Rhumatolagist). Then 2 years after that have psoriatic arthritis, rheumatoid arthritis. Had to switch doctors and the new doc calls me after the 2nd round of blood work to tell me I have lupus. Hopefully your meds combo works for you. If not don’t be afraid to tell them. Hugs to you.
Loved that Vogue calendar
Autoimmune Issues can definitely sit you down when you want to stand tall. Always trust your body. Rest when you’re weary, advocate for yourself always. I was Dx with MS on Christmas Eve 2018. I’m 45 now. I went through a period of confusion and sadness as well about the diagnosis but once I educated myself and my care team and I found what worked for me, I felt better about things. Love to you and all my Autoimmune family. Rooting for you sis.
My mom was diagnosed in her early 20s. A few of my aunts have it as well. I definitely didn't understand it growing up, but as an adult I understand now. She unfortunately passed away at 47. It attacked her liver and then her other organs. She has been gone 20 years now, but I am so glad that there has been so much research done, and treatment improvements. Please take care of your health first and foremost. People will understand or they just won't. I didn't end up with it, but have diabetes, fibromyalgia and thyroid issues and people just don't understand what is happening on the inside. We have to make it normal and educate people to understand. I'm so glad your being open about it and having your platform to educate as you learn, I'm so grateful for you putting yourself out there.❤
your honesty is refreshing. I don't want to watch someone unboxing a huge corporate advent calendar and say everything is amazing (when it's not) and completely disregard how much they pay for it.
Also I hope you're able to feel better now that you've received your diagnosis ❤
I am so happy you are sharing this!!! Thank you! I have Lupus and RA and when I am hurting I watch you all the time...thank you
I have wondered if you had lupus for a few years- I have it - diagnosed at 32. Praying for you- and know this- you will have a full wonderful life! Learn a lot- do everything you can and ALSO don’t live in your disease- I know so many women that are only their Lupus. You got this!!
Truly wishing you nothing but the best! I hope this diagnosis has brought you some peace. I'm learning a lot from you about lupus itself, the importance of checking in with your body and health, and the grace with which you've been braving these challenges.
So glad you were able to get diagnosed and figure out a plan with your rheum going forward! I remember several years ago, commenting that a LOOOT of your symptoms seemed very much autoimmune/Lupus related. I was diagnosed with RA and APD a few years after getting very sick with reactive EBV/mono in 2019, and so many of my symptoms were/are very similar to yours. Autoimmune diseases can be very tricky to diagnose bc they can often be brewing for years before becoming full blown enough to show up on labs. Getting diagnosed is never fun, but it can be very validating to know that there was indeed a reason for all the seemingly "random" symptoms all along. Will be praying for you, and following along ❤
Sorry to hear that you have joined the lupus warriors. I know when I got diagnosed 7 years ago it was a tough time. But one of the most important things is to not forget to take care of your mental health. Sometimes we work so hard taking care of our physical self to fight off flares that it takes a toll on our mental well-being. And it really helps to know you're not alone.