Bad Flare & Mind Games
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- Опубликовано: 21 апр 2019
- I've been having a really hard time lately with my symptoms. I also discuss some common issue that we face as chronically ill women.
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I'm a SAHM of 4 boys, living with a chronic illness. I also have a special needs child who suffers with ADHD, anxiety and High Functioning Autism.
My name is Meredith (aka Meri) and I'm a stay at home mom of 4 boys (including twins). I also suffer from an autoimmune disease called Sjogren's Syndrome, which makes each day a little more challenging. I am also the mom of an ADHD ODD, Asperger's child.
Like most of you out there, I'm just a regular (crazy) chic trying to survive as a mom. I'm far from perfect, but I do my best to get through each day while keeping everyone alive. I also share what works for me for managing the day to day madness of being a family of 6.
Please feel free to leave me feedback. I love to hear from everyone!
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I totally feel you. It's even worse, if you're a young guy with SJS-Symptoms. Not a single doctor believes me, that there's something wrong. For the chronically ill people, it's not only a battle against the illness, but also a battle against the doctors.
You are so right! I go through the same issues...especially with the doctors! I hate going to the doctor! They don't care about their patients anymore.
I feel for you, especially having to go through this with young children when there is so much to do! Hang in there and take care!
Mark Culley
You’re right I feel the same, doctors don’t care anymore , I have SJS too
This is exacly what we go through! It is reassuring to hear someone else explain how I feel. I also tend to surpass myself because I try to tell myself I am not sick... but I know it is not the way to go.
I so related to everything you said. I have progressed to the point of being housebound and have become one of the invisible ones. How you do this with childrenI can't even imagine. You are a warrior but plz don't do what I did and hide it keep pushing yourself it will bite you in the end. Learn to say no, ask for help because what people think doesn't matter.
I know this video is over four yrs old, but I really needed to see this. I was diagnosed with Sjogrens about four years ago but the symptoms goes back almost twenty years only to be told by drs in my early twenties that my joints were hurting because I was getting a little older, that I was tired because I was a working mother, and basically the other symptoms were in my head. I really need to find a support group because it's hard when I'm having a flare but no one understands.
I follow your post and i have same issues as you. Your post help me tremendously and i can see how strong a woman you are and it makes me stronger. Thank you
Hope you are having better week. I've been a subscriber since you started and I have an autoimmune disorder and currently am in a huge flare. I'm so grateful you share so much because it makes me and others I'm sure feel less alone in this.
I don't like pity neither or attention. Maybe that's why no one would ever believe me if i tell them that i am sick 24/7, im always in bed, i have doctors appointments 3 times a month, im on 14 pills a day. Im always in pain, and the list goes on and on and on. Nooooooo one will ever believe me, so its easier to say "im fine thank you. "
I follow you also, you are much younger than I am, but I didn't get a pSS diagnosis until I was in my mid 50's. I believe my illness has been with me much longer because I was sick a lot even as a child with really bad things. First came the diagnosis of fibromyalgia and after that, everything was fibromyalgia until someone did the right test on my blood and found the pSS antibodies. Even so, my rheumatologist still pushes quite a few things into the fibro basket. :( Perhaps you could put up a whiteboard and have some small chores the boys could do to help you, clear the table, pick up toys, pick up dirty clothes, etc. That helped my grandson (whom I am raising) a lot. Of course it was hard at the time, but sticking to it will get it done. And you have your husband too to encourage the boys to help you also. I hope your flare passes soon and you get some good days.
I thank you so much for sharing your frustrations, most especially when you tried getting doctors and others to know that you weren’t well. You’re right. Women aren’t heard regarding some of their symptoms for anything, even up to this day. I am now going through testing to see what autoimmune disease is attacking my body...my doctor suspects Sjogren’s Syndrome and Fibromyalgia. I’m looking forward to having an answer to the chronic fatigue, pain, etc...then I’d know what I’m dealing with. To be empowered with answers helps...somewhat.
I appreciate you so much!!!!! Everything you describe in your videos is exactly how I feel!!! Even how sick you are and your symptoms!! I experience everything you experience. With the doctors, the weakness, etc. I have a wheelchair for places like the zoo or malls etc. I have a shower chair, and I have a cane. Anyway thanks so much for sharing your journey!! God bless you!!
Thank U 😊 💗 So much for SHARING, I have hope after listening that this I'm going through is REAL and how you make things work out. 🌻
Thank you for the update. So many times i'm like omg, you stole my diary. We had a similar Easter what with my illness acting up. Sigh. Oh the mind games... I've got lots of emotional trauma starting from childhood that make it even worse. PTSD, rsd from add. Ugh. It's traumatizing to me to want somebody to give sympathy bc nobody ever does but also absolutely not want it at the same time lol
Happy Easter . I had a bad day also and it was a stay at home by self .I was unbalanced shaky dizzy and itchy and my eyes were full of sand or sandpaper I mouth was on fire I was having chills my every bone in my body ache I was the same way as you honey I was thinking of you have a nice day hope you feel better I am one day a good two days bad but what we’re hanging in there girl thank you for keeping us posted. Love you and understand you .
I totally get what you are going through. I do find if I have the shakes that a sweet drink of tea can help. Hopefully your infusion will kick in soon. Take care x
Thanks for being so open. When I was a teen in the early 60s I had a lot of foot ankle toe pain and my Mom would take me to lots of doctors. It took over 5 years to diagnose me as having Rheumatoid Arthritis. At times I could not walk at all and had to crawl. Very frustrating to say the least.
This all sounds so familiar. I'm sorry you are having such a bad go. I just found you and am so interested in watching all your videos! Thanks for sharing and keeping it all so honest and real! I have suspected Sjorgrens that is I believe a comorbidity to my Ehlers Danlos. Everyday is such a struggle but looking for the bright lights, even if they are a little dim. Thankful for another day with my daughter, my husband, my dog, having something to eat that I can not feel sick....laundry list of little things that I can hang onto and be happy. Sending you strength and hoping you feel not alone. Yes for sure the mind games. We seem to all be just hanging on best we can, some days by the fingernails but just hoping for an okay day and loving it when it comes. Hang in! 🌸
I just love you, Meri!!...Keeping it real is so good for you, us all...NEVER, NO DOUBT (Yes-Gwen Stefani, right? but NEVER DOUBTING "SELF"...YOU/WE KNOW WHAT WE KNOW; OTHERS JUST GOTTA CATCH UP--THAT'S THE ADDED PAIN!..You know that I'm THANKFUL for your channel of truth--it's mine and so many others' "place and space"of human connection on a level that is so dismissed because of closed minds and even hearts (and that includes medical professionals, until sadly they or their loved one is affected--and no matter what I would never wish that my past or current or future challenging state of being on any other human, in all my hurt, pain, agony, exhaustion, debilitation, and/or limitations; as I wouldn't wish any of it on my worst enemy, and I don't have any and especially regarding my medically conditions, I accept and know my body, so self-love and UPlifters are my support, like you!)...and my great hope would be: "Oh, that empathy prevail and, us all....You know that I'm THANKFUL for your channel of truth--it's mine and so many others' "place and space"of human connection on a level that is so dismissed because of closed minds and even hearts (and that includes medical professionals, until sadly they or their loved one is affected--and no matter what I would never wish that my past or current or future challenging state of being on any other human, in all my hurt, pain, agony, exhaustion, debilitation, and/or limitations; as I wouldn't wish any of it on my worst enemy, and I don't have any and especially regarding my medically conditions, I accept and know my body, so self-love and UPlifters are my support, like you!)...and my great hope would be: "Oh, that empathy prevail and foster a greater love and investment in the human connection where we are touched in such an close snd intimate "space and place", so deeply equal to knowing even if we do not ever experience that which affects you or me or the baker or librarian or the astrophysicist or the 5yr old next door daily---just plain EMPATHY, AND GREAT ADMIRATION and SUPPORT (by asking, but even in silence, especially if it it will not add positive forward motion for anyone), but absolutely NOT PITY....for THERE IS ABSOLUTELY an uncomfortability in society and in many cultures regarding illness and things they can't relate to (find it difficult to understand). And people tend to be much more comfortable with their ego-centered, the-world-revolves-me existences, and if you do have similar and familiar happenings, sadly there is less connection to "outsiders"especially if medical conditions rear their socially disconnected heads--BUT a world of no sympathy for someone could sadly be just a doctor's visit and diagnosis away for someone who just did not get it when you spoke about your inability to "just" fold your laundry--which I get-- but now that person actually may "get it" doubly, meaning must know now the amazing awesome courage it takes to chronically strive to daily live and be "the best at doing 'your YOU' daily" (whatever "it" was that they did not really seem to even believe existed for you because they were sadly diagnosed with worse). IGNORANCE may appear to be bliss for those just can grasp your truth, "until Until", because "Everyday IS Different" and then it's really not as hard to become emotionally connected how a total stranger is feeling or what it must be like to just be you everyday--through both EMPATHY and SYMPATHY...STAY lifted UP, Lady! 042719 (Sadly, I hadn't been able to watch lately due to Sj😭& way M😰, hence the long winded-comment...hope you got the gist and felt the energy and vibes!🤗)
I follow your channel as well amd wish you always good health.my daughter has sjogrens age 19 and i and am amazed at how you manage. Younare amazing.
Feel better💕
Hope you feel better . I woke up today and yesterday like I had just walked threw the Sahara desert, dried up and sucking ice cubes . The cane thing I struggle with because some days I do not need it other days I am walking like I am 100 years old . Hang in there sounds like your prioritizing well . I have to learn that .
Do you get dizzy and shortness of breath?
I do
well, I just had 18 blood test come back. I was at the end of a Terrible flare up, but my results showed bad c reactive, sed rate, ANA was low positive, and more. thing is, the tests were worse in the past and my symptoms seem to have been dismissed , AGAIN! TODAY I HAD BACK INJECTIONs. I'm hopeful...AGAIN, you describe my symptoms, yet I get no diagnosis..i sent rheumatology to PLEASE summarize results. I don't understand many tests...yes, being very still feels best. the sweating and freezing doesn't end...I pray you feel well soon and continue to pass on info. I've been inquiring about autonomic neurology as you suggested...when I lie here, with my sore muscles, skin, bald head, fatigue etc.., and recall how I hustled to run a successful buss. years ago, painted my home, went out dancing, etc, I KNOW I AM NOT CRAZY OR HYSTRIONIC! NOR ARE YOU! I know NO ONE could function feeling like this!!!! I WANT TO BE ALIVE AGAIN! your words have such true meaning. my words to docs have no meaning, nor do my test results I see...if they gave me one good year to live or this continued suffering indefinitely, you know I'd take the year...or less, just to wrap up things so as not to burden my family...I do not feel sorry for myself, but this is like a personal prison monopolizing my body and mind. THANK YOU AGAIN AND FEEL BETTER SOON
Hi I don’t want you to give up searching for an answer. I suffered horrendous fatigue for years and years. I was tested for everything from lupus to sarcoidosis. Turns out I have non-alcoholic cirrhosis of the liver and I’m going through menopause so my hormones where totally out of whack. So I started hormone replacement therapy and I feel fantastic, the bone crushing fatigue is gone. I can also now say what is from my liver, and what is other issues. And I’m 45. So maybe get your hormones checked because they get forgotten about, and I really hope you feel better soon. ❤️
Going through this at the moment. Back in 2015 I had a positive ANA and RNP 2.5. I was referred to a rheumatologist. Once I seen him and he retested, everything was negative. He diagnosed me with fibromyalgia. I seen the rheumatologist for about 2 years and my symptoms kept getting worse, new symptoms developed. Finally he said there was nothing else he could do for me, I was a complex case. I went a good year or two without seeing a doctor or being treated. My symptoms got even worse and I had a few new symptoms pop up. 7 months ago my primary tested me twice in 2 months and I had a positive ANA and RNP 2.5 again both times. I was referred to a different rheumatologist. It took 7 months to get in. I went last Wednesday. I told him of all my symptoms, he did blood work and told me he would call me. I've been monitoring the trickling in of the bloodwork online and so far, everything is completely normal! I'm so frustrated. This past Saturday, I sat outside for about ten minutes and within that time, my skin became red and splotchy. It became inflamed and itched. Every since that day I have felt worse and worse. Today I am using a cane to get around bc I hurt so bad. All I can do is lay around. I just know that when I hear from the doc he is going to tell me that everything looks ok and its just my fibro getting worse. That makes me want to vomit and cry. It sucks knowing that something is wrong with you but there is no laboratory proof. I am beginning to wonder if it is all in my head. Obviously I'm not as sick as I think I am. I am to the point of Eff it. Ill push myself until I collapse and maybe then Ill be taken seriously.
Have you tried the autoimmune diet? It helps, but no more pizza. The RUclips videos of MD Terri Wahls explain how diet and lifestyle changes reversed her MS.
Lee Health. Keeping you balanced is a channel you might chexk out for your balance issues. I believe you. You will pass out but probably in the hot shower. Thats were I did. I have the sickness dizzyness, horrible brain fog muscle pain headaxhes, muscle.pain, cramps and spasms from my head to my tpes and finger tips. 3 rypes of neuropathy thanks to good ol sjogrens. Eyes mouth throat esophagus stomach and everything below. Horrible ringing in ears. Just to name a few and to let you know if not for your chanel i would b feeling so much worse because no one understands especialaly my husband and friends. It nice to know someone does out there so thank you for your channel. God bless.
I am 42 living with SS. At this.time I am in very bad pain(legs throbbing, sharp hip pain,headache) my Dr gave me a prednisone tapper. I am waiting for an plaqlinel increase 400mg. So you have any advise. Working is becoming way to hard. I cried at work & went home early. Thanks for your videos.
@Nyisha Brown, Miss Nyisha, wait a 3-4 weeks to see if the higher plaquenil dose reduces your symptoms. If it doesn't and you still have clinical symptoms your doc could out you on another DMARD along with your plaquenil. Hopefully you are seeing your rheumy for follow up within the next 1-3 months. Hang in there sometimes it requires a combo of DMARD's to get inflammation cooled down. 💜
Im just wondering if holistic healing may be an alternative for you..ugh Meri im so sorry get better 💗🌷