So Discouraged
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- Опубликовано: 18 авг 2019
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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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You are not alone. Sending you virtual hugs. ♡
I have every single problem you have. We are duplicate copies. Only difference is I have taken to the bed. The pain issues, physical and emotional, have become too much. Besides the SS and fibromyalgia and osteoarthritis, I also have CHF and Chronic pulmonary failure. I have had these problems for 12 years. I just turned 65 last month and I have decided on palliative care. Life doesn't seem fair, especiallly for you because you have small children. I pray for you dear! Please get strong and healthy! I encourage you to seek help from the Mayo Clinic in Rochester, Minnesota.
Hi what your describing sounds like another autoimmune disease. I literally felt like l was dying from the inside out. I remember standing in my kitchen crying because I couldn’t do the dishes. It’s the worst feeling in the world. I hope you get answers soon. ❤️💐
I so understand 😥 my exhaustion gets so bad that I can’t talk on the phone or to my family members. I wanna just sleep. Hang in there doll. I know It’s heavy to carry this and try to take care of others when you can’t take care of yourself. I totally get this. Ugh!!!! Praying for you 🙏🏼
I feel you sister. It seems like we have had a lot in common in terms of medical issues and medical PTSD.
I know what you mean about the fruit and produce! I have to throw so much out for the same reasons. It's such a bummer. Also I can't keep up with the plants outside so they are neglected and die. Doesn't stop me from buying the produce or planting the plants year after year. Lol
Somebody Someone yup!!!! But I’ve given up for now on the outside plants :(
@@sweetandmagical Me too
Meri, I wrote on another vídeo.. I had been like you for 6years and then things got even worse. I got now debilitating xerostomie and that does not allow for rest, sleep..so, please look for alternative treatments. Regular doctors are killing us slowly by removing organs, drugging us. Sorry, I see myself in you and I am worried.
my mother has leukemia and has previously survived lymphoma I wish you the best! please keep hope I know you don't belive in God but positive energy is for anyone and can have a positive affect on the body. I messed up my life big-time but I'm staying positive. I was suicidal I believe in you! many people watching this no doubt believe in you. Sending positive vibrations towards you! Much love!
It Breaks my Heart that my Meri is so sick. I wish I could take away her illnesses and keep them with me. I LOVE You my Darling. But you do impact so many people. I'm so Proud of you my Love Child
Thank you.
My heart goes out to you! I have Sjogrens too tho my tests come out negative also, very discouraging. I went back on preadazome and it helped me a lot this time but I can't stay on that for long. My face is big from it. So I'm winging off of it so now my pain is coming back! My sister's came out for dinner and I kept it simple too but it put me down for a few days. You are a young mother and I feel for you, my children are grown, I'm 62 and have been trying to figure out what's wrong with me for near four years. Hang in there, stay strong!
The “invisible illness” I hate those words....
Legit had this day yesterday !! Today is starting off good and I have hopes it will continue... one day at a time.. thankyou for sharing I enjoy your videos and wish you all the best x
I HATE SJOGREN'S!
100% Relatable #we'rewarriors
One thing at a time...
You are right. Thanks so much for watching ❤️
You are amazing thank you for speaking so honestly about your experience. You make me feel a little less alone and it feels good to hear someone relates i have lupus and RA I'm 30 and have a 3 year old and im a single mom and it gets hard .
Thank you. Stay strong!
I have sjogren's and fibromyalgia, have you ever tried dribose? I take about 2 pills 4 times a day when I have a major flare up and 50 mcg of CBD. Dribose is helpful to get energy to the muscles so I don't feel so weak and the CBD helps with the pain and inflammation. Thought I would share my experience. My typical flare up is numbness from mid back down to the tips of my toes with burning, tingling and cold feet, extreme weekends in my legs and of course all the fun dryness in mouth and eyes along with the joint pain and anxiety that comes along with feeling all those sensations in my body.
I'm so thankful for your videos..its helped me out alot ..I really hope you start to feel better I can't wait to they find something that really helps u
Can totally relate hun we just have to somehow keep hanging in there...though some days it feels like there’s nothing to grip xxx
The same for me. I understand. I have also had to throw out fruit and veggies or watermelon because I am too tired to cut it or be creative with meals. I have a grown son with autism whom I take care of and it is sad when I know he would like to go somewhere like out of town or even the beach but forget it. My feet have horrible pain when I drive and my neck and back cannot handle it. Then the next day I cannot move and he needs me. I just have to keep going. Faith in God that some day all will be better helps me. I hope and pray you feel better too ! ((gentle hugs))
Gluten isn’t the only food you should watch out for.
I didnt think the mtx was working either til I stopped taking it. 3 weeks later I knew it was working as it caused my sjogren's to flare
Sending happiness your way I'm sorry meri ...if they can send men to space then why can't they find find answers. 🤔
I have Hoshimotos disease i was diagnosed at 8 most are not diagnosed untill there 30s ..ppl just dont understand when my body hurts i have zero energy heart palpitations that cause panic attacks ..severe anxity amd so much more ...i often get called lazy and get told to suck it up move around do something anything but they just dont get it . i dont look sick so it doeant register or i get "you never feel good" its hurtful amd depressing my body has been fighting its self for 27 years . alot of damage has been done to me from having active Hoshimotos for so long . 😢 I have 2 kids who arw much older 21 amd 17 but i was told i may never have them both pregnancies were hars but the last one my daughter almost killed her and i both . shes fine healthy and beautiful and a senior in high school. The rest of my family just doesn't get it .
I'm so sorry you are going through this. Having family support is so important emotionally. I hope you find your tribe of supporters. Stay strong ❤️
I understand what you mean about getting a diagnosis. I feel the same way. I’m waiting on my skin biopsy for neuropathy as well. If mine comes back negative I’m not sure what’s next.
I hope you find some relief soon. One day at a time.
I’m in the same boat you’re in. I had a scan last week to see if they could find a tumor it was clear, I hoped they would find something so they could take it out and I’d feel better. Yes that fruit sits on my counter and taunts me “ hey lazy you were going to make something nice out of me and here I am growing a beard.” Yes it SUCKS!
hang in there i know it sucks to be ill and not have anything to do to fix it it really stinks especially when you cant get out of bed and take care of yourself. just remember. you have your family there to help i totally get it you arent doing well with it just do the best you can. i wish i was there to help. praying to you. hugs to you. maybe try another different kind of meds. maybe the meds your on arent working
your not alone my aunt had cancer but is doing better now but no medical issues so far
Regards the fruit and veg. Cook fry or purée and freeze them, then cook with them later
Great advice, Thanks so much ❤️
Sending love and prayers. I understand; give yourself grace. It sounds to me that you’re needing another doctor. Make sure they’ve checked viral sources. Fibromyalgia and ME/CFS have normal lab results,
Is this drug for arthritis? Have you seeked an holistic practitioner to check your internal inflammation? Digestive and internally? There may be natural options for you. 🙏🏻 I hope you feel better!!!
Stick all veg in a pan, cook then freeze for a sauce later
I feel like the words you spoke could have easily come out of my mouth. Hang in there, your not alone.
Stay strong ❤️
I hope you have answers soon. I have had to struggle with finding answers outside of my Lupus. I was diagnosed with sjrogens and I have nuerapathy just recently...your videos have really helped. I feel your frustrations. I hope tomorrow is better. 😞 ( oh btw...feel you about produce it made me so angry that I just cried)
I'm so happy my videos help. Thanks for watching. Stay strong 😊❤️
How has ur hair been doing? I just watched the video u posted a few months back related to hair thinning
I get what you're going through so much!! I HATE this!
The past couple of weeks have been increasingly harder for me....the fatigue is ridiculous.....and the pain all over and through my body makes my days hard...but harder is the fact that folks cannot see my illnesses....they think I can just "make myself get up and do something"!!!! I wonder does anyone really know how I feel? I had the lip biopsy about 20 years ago....and I absolutely hated it! I am a wimp when it comes to pain, so you can imagine my whining....but it did finally prove that I have Sjogren's. I now have lupus and rheumatoid arthritis. Mix all of that together and you get a hot mess! I try very hard to just let folks think what they want to think. Most seem to think I am just lazy, I reckon, but I know how I feel. I know exactly where you are right now....it is a place I hate in a mighty way....but I am learning that I will get out of that place soon....it may not be as soon as I want, but it will pass. It does make you really appreciate the good days.
Just curious if your ANA comes back positive? I’m going through the same thing right now. Have positive ANA, positive rheumatoid factor. Both are lower positives though. Also have extremely low vitamin d, but doctor is on the fence bc rest of labs are good.
my ANA is always normal. My blood has always been normal. However, for the first time ever, my SED rate is high. so odd
I am in the same situation as you and I am often very discouraged. Do not know how it can go on .... I received my first rituxumab infusion 1 week ago and the second one next week. Hope so much that it can help me. Unfortunately, it did not last long with you, right? Do you also take Cellcept and Prednisolone? I wish you that you feel better and that there is a way for you to live better with this disease!
Sorry for my english, it´s not very good....
Best wishes from Germany,
Milka
Shoulder pain. Dry eye and mouth. Have been tested two prior times for RA and nothing. Now I have a positive ANA test so they are sending my blood to mayo. I have every symptom of sjogrens...I’m 60 and starting a new job in a few weeks. 🤦🏻♀️
Do you mind me asking what type of issue you are having with your skin? I have a skin issue that they can’t figure out at all. As for my sjogren’s I too have tried so many things and nothing has lasted very long. It is so frustrating and it is discour. Sending you you gentle hugs.
I get what looks like pimples, but they are actually painful infections that linger. Very painful too.
My mom gets so mad at me when I'm off is all I want to do is lay in bed and sleep from being so exhausted. Right now I've been out of my Plaquenil and my mind isn't all here and my body feels so drained. I'm gonna try the CBD hemp oil like you said. As I'm still waiting for my eye exam for the Plaquenil to go to my Reumotologist.
So sorry to hear it. I hope the CBD helps you. Stay strong. ❤️
Hang in there!!!!!
As my husband and I have been saying the past few years(me: fibro him:seizures, fibro, possibly something else)....good news is we see nothing wrong, bad news is we see nothing wrong.
Do you ever have pain in your ribs or lungs?
I hope. You feel better. What would happen if you got off all those meds & took a more natural approach? I have sjogrens I'm tired sometimes but I do supplements. And kombucha etc.. I agree about the fruits & veggies I waste alot too.
Yet another video that's basically what my diary would be. Sending you hugs and umm companionship in discouragement, is that what it's called?
Thanks so much *hugs* ❤️
Do you get burning eyes?
Not often. Only if I cry.
Well, young lady, you know I understand more than most. Also, how about I drive myself out of my bed to come visit you soon. We'll call it a tentative plan. Message or text me. I say tentative because of the nature of how we feel, but mostly because my sister-in-law is 9 months pregnant. So, as long as she doesn't give birth or go into labor then I will make it. But, definitely message me. As alone as you feel, you are not alone. Be well!
I know where your at lam kind of disgusted, l’ve even stopped going to Doctors’ l have been sick for over 30 years , l know what you mean about the way you feel , lam getting sicker by the days , flu symptoms, pain all over , irritable bowel symptoms, every flare l get a new symptom. “I am the same way with fruit meat when l feel better l think l can cook, bake l buy things they go bad , l know l have Sjrogens no doubt , just need to get up enough energy to find a new doctor! because the other one had a bad attitude and no patience whatsoever, l also get so many symptoms here n there , lam a lot older now , l am scared doctors will say now “well you are 74 years old your not young anymore, The thing about it is l have been this way since l was a young woman and doctors never understand me , it’s like they were ignorant to these types of illnesses, l think they only work on the less complicated issues “l never had much money the good insurance so l can find the right doctor ‘if l have to fly to another country , but lam just a poor senior person! with a lot of things going on with my body every one use to tell me well you don’t look sick “ And believe me l look sick Now ! after these many years without being treated for this problem that l can’t seem to get anyone to acknowledge! I have preferral neuropathy in my fingers “ Doctors don’t want to address that either l guess it’s too much for them ! To handle 🙏 💁♀️💕
Find a functional medicine doctor, it's worth a try. I'm going to for my issues, gotta heal the gut and give the immune system a restart.
Thanks for the suggestion. Never heard of that kind of doctor.
Try LDN
I've asked many of my doctors. None will prescribe it for me.
I don't think sjogrens is doing all this, do you? Now they say I DON'T HAVE IT! I YES! IT DISAPPEARED! have been made to feel CRAZY! WHY do they spend an hour asking questions if they only go by their tests??? I've gotten so much worse with age but it flares up whenever. When it's not flared up, it's STILL BAD....THEY BLOW WOMEN OFF COMPLETELY! I AM TOUGH AND NOT LAZY. The medical field has made me feel worthless and crazy...best wishes...I can't get simple stuff done too often. leaving the house now is a BIG DEAL. so many things have gone wrong with my body, it simply can't be coincidence. Why can't anyone see this, or do they simply don't know so they blame their "histrionic" patients? My hope is gone. Comfort is my priority. I'm very upset with doctors who pretend to care but really just want the simpler patients...God forbid you wear makeup to the doctor, even if you apply it lying in bed, you are truly judged. It has more value to the doctors than what you tell them....sorry, i'm so fed up.
Plaquinil .........does it make you fart?. I sympathise with you wanting your mum to look after you.
I haven't noticed that side effect. Everyone is different though 😜❤️