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Q&A with my Mom | Being a Parent to a Chronically Ill Child
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- เผยแพร่เมื่อ 22 ม.ค. 2018
- If you have anymore questions for my mom and I, leave a comment and we will try ton get back to you!
Instagram- @life.with.stripes
Blog- www.lifewithstripes.blog
Thanks for watching!!
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This was so sweet. My mom is quite the same way. With the difference of she would have no problem assessing a port. My journey first started when i was 10 weeks old. I had meningitis inside and was hospitalized. Was always the one sick out of my siblings. Then was diagnosed with type 1 diabetes at 13. And it just got worse from there. Now at 29 we found out about my EDS. I am hospitalized at least once a month. My mom has been my warrior as far as i can remember. With every diagnosis and problems i have, she researches and learns everything she can. She has told doctors off as well as some nurses. I tried to tell a nurse my blood sugar was dropping and she said, we just checked u ur fine. A few minutes later i became incoherent and violently shaking. She yelled at the nurse and said, she said shes going low, u need to test her or get me someone that will...i had dropped to 17. I could not talk, but i could hear and somewhat see. I could hear them freaking out and everyone running in. The doctor, with an attitude said. What happened. My mom, pissed. Said, do u believe us now that somethings wrong? Either u admit her and start figuring it out, or im having an ambulance take her to a hospital that will. She has spent countless hours with me in the ER or in an icu room. She is my hero.
Ashley Gibson BIG Yay for your Mom too! Great that you appreciate her❤️🌺🌺
Yes, my mom is amazing. :) she taught me to never give up and to keep fighting.
Behind us strong zebras is an even stronger mum. Our mum's are so alike ♥️
I have seen countless uneducated and simply mean doctors. When you finally do find a good doctor, it's like finding a gem.
You guys are awesome. Your family has your back and has a positive attitude through all of the ups and downs. Way to go!
Hey, This vídeo is awesome.. as are all your videos! My 11 yr old daughter and I both have EDS.. we also have both recently been diagnosed with AAI, CCI, and myself also Chiari - Malformation. Right now we are fund raising for both our fusion surgery’s ( myself also decompression too) its so very hard seeing my baby struggle, with all the illnesses.. that I have her. It’s also very hard caring for a chronically ill child while fighting chronic illness myself. I have had to fight so hard to get help and diagnoses for my child in these last few years, which also led to diagnoses for myself too after spending most of my life before sick and years of misdiagnoses and been told it was all in my head! I fought so hard to fight for answers for my little girl so that she would not have to go through years with such pain and no answers like I did. We are so blessed to have found diagnoses for us both and we will have surgeries that will help us with the most life threatening issues in our sounds etc ASAP. So great full for this and that we found help for my daughter when she is still young. You and your Mum are wonderful examples and you are such an inspiration! Keep fighting! 🦓💪( I hope it’s ok that I mention this? If not pls delete my comment and I apologise so much if it’s not ok) but My little girl began a TH-cam Chanel soon after we were diagnosed with EDS, to help her process everything she is dealing with. It’s called Me, my Mom And EDS. She would LOVE it if you would check it out! You are so strong we love your videos! 🦓💜
I was wondering if you could do the same sort of thing but with your brother and sister please? and a separate video but with your dad if possible please? I would love to know what they think about having a chronically sick sister or daughter as this has really helped me to understand why my parents are like they are unfortunately they don't understand my health issues and they often say that I am making it up or that it can't be that bad? It just helps me to understand how or why they think like that. Very good video maybe we could do another one later on and see if the answers they give changes and why did it change? And maybe we could ask some other questions if that is possible? I love your channel and family. Your channel is one of my favourite channels that I can't wait to see your video's. Please take care and God bless you all lot's of love from me kelli xxxxxx
As another parent of a chronically ill child, while it can't compare to your situation, at all, I related to this SO much! Thank you for sharing, and please thank your mom as well! 💕
My mother passed away 8 months ago and this has been the first time I have been able to watch something ‘mum’ (I’m Australian so not ‘mom’) related without bursting into tears! I am just simply happy that you have an amazing woman by your side.
this made me cry. you are so inspiring and amazing you are so brave and i have looked up to you for 2 years. i love your stength and hope
Love this video♡ It made me really think about my moms point of view
Wow. Your mom is awesome! Because you're awesome. Stay strong young lady. You're an inspiration to others, me especially. Thanks y'all!
You two! This video was an assignment for my a Child Life class and I am absolutely in love with you guys now! Can't wait to watch more. You sharing your journey is going to be incredibly insightful for me.
Mickey,
You're awesome. I have a muscle disease and so I can relate to you on so many levels. You are an inspiration and strong for keeping on keeping on.
Take care,
Floyd
Thanks for sharing your story! I'm binge watching all your videos right now and love them all. I have fibromyalgia, mental health issues, back problems, etc. i can relate to so many things you talk about regarding chronic illness. Especially the part about the good doctors leaving and feeling like you had to start all over again and then getting an even better doctor. That's not always been the case for me, but recently my pain center closed and it was a headache even finding a new pain center, to take me cause I couldn't get my records (they were transferring them but it took months longer then they had said) and no one would take me without them and I was going to run out of meds and the pain center I ended up at, ended up having an amazing doctor, who for the first time in 10 years didn't treat me like a drug addiction or seeker, and saw my pain and adjusted my pain meds accordingly. I was finally on a med and doses that helped me get through the day with less pain. It was a blessing in disguise, I only wish I had my current doctor sooner.
I love how Godly and positive yall are❤️
Mickey, I watched this when you uploaded it, and now I watched it again. So much has happened in the meantime. I would love to see another video with you and your mom. To hear her thoughts on the past few years and on how she managed to deal with your really bad struggles and on how some things are so much better now. Best wishes!
Hi, I am new in this channel, but I want to say to you how wonderful attitude you have bout things you’ve been through. Love your smile, your energy to share your inspiring story. Just keep going. Many can learn from you, I already did. Wishing many happy moments...
Awh your mum is a wee cutie you can defo tell she loves u biggest much xxxx
Love this video, to get your moms point of view. Wish my family had that perspective with me and my chronic illnesses
Your mom is great! I wish I had someone like her helping me fight through everything, especially bad doctors! I sure know how frustrating that is.
I expect to see more of her in your videos :-)
I’ll answer the first question from my perspective: hell yeh, I love medical stuff and learning more about central lines and such
I was glad to hear the part in the video where you are living for today , to be quite honest I was about to cry . If not for seeing you too sitting there so strong the helplessness in my gut would never go . I subscribed and look forward to updates , God bless , you are in our prayers .
I see where your awesome attitude and outlook comes from :)
I love that your mom is a badass and tells off doctors
I for sure thought your mom was your twin lol!
Awesome video ❤️
Love this video! Great advice and thank you for sharing!
My question is, How do family vacations differ for you and your family?
You and your mom are so pretty! ... and I really like her necklace :)
Love this!
You have a lovely Mum, Mickey xxxx
Yeah, that one about accessing ports reminds me of a bit of my childhood. When I was almost nine, I had open heart surgery for an atrial septal defect. One of the things my mom kept commenting on even later, was how small I looked in the hospital bed. Well I was small in that bed, I was the size of an average 5 year old in a full size bed. LOL I think one of the other things that has helped here is that it's clear that your parents started fairly early on getting you to manage a lot of you care. It's a huge thing because it's very empowering. Your mom and dad "done" good girl!
Love that you are doing this! I subscribed and will watch for new posts. I'm going to be doing something similar. I think it's a great way to let others know we're there for them, through our own journeys! Well done! - Tracey Mendenhall Porreca
I envy this so much. Please give your mom an extra hug for me. Even with diagnoses my family either doesn't understand (and so they ignore it and treat me like I'm normal) or deny it and ridicule me as attention seeking outright, like in my mom's case. I don't mean to be a downer, I love seeing videos like these and I'm so happy you have the support of your family 💙💙 Just wanted to mention the contrasting situations and how it can really change our perspective on our illnesses. I know I'm sick but can't get treatment because I have almost no help and I'm unable to do much of anything myself, but pity party aside it makes me 10 times happier to see others get the support and help they need because of it. Love your videos 💙
My mom always said if she could be the one suffering from my chronic illnesses instead of me she would instantly. It must be so hard to see your child suffer. I try not to tell her about my symptoms so she doesn’t feel bad
Thank you for this video. I'm 50, and my mom is still my main supporter, she kept m from giving up. I got ill from lupron shots, and it went downhill after that. I'm not sick anymore, I'm healing, thanks to natural remedies. But it took 17 years for me to find them. My mom still says those things to me sometimes lol 🕊💗🔆kratom helped me save myself
My mom is the one who gave me EDS, she had almost no symptoms, I have a lot of them, it progressed really quickly after my 20s. My only brother also has it, not as bad as me but not as little as her. She had no diagnosis, no way to know, but she feels really guilty about it.
Me and my brother decided not to have children to don't risk tem having EDS, but it's not as drastic as it sounds. He is living with his girlfriend and they really don't want or like children. My husband and I like children and I always thought I would adopt, but with the time I noticed that a child is not in my plans, I like a more independent life, and my health struggles would make being a mom really harder.
I still love my friend's kids, but really don't want to be a mother.
Also, a pregnancy would be really risky to me, I already have several mobility issues. My major fear is an unwanted pregnancy.
Thaise Athayde Maybe too personal a question, but I’m just learning about EDS. Are you able to take birth control, which would really drown out your fears of unwanted pregnancy, or is that just not an option for you?
@@bjf8962 I can't, have really terrible migraines, but don't know if it's EDS related. I use fertility awareness method, that's 97% effective, combined with condoms, that are 98% effective.
Even if I could take birth control it wouldn't solve everything, many friends of mine have kids because of fails in birth control, mainly the pill, but also broken condoms.
I really want to get sterilized, in Brazil, where I live, the legislation says you must be over 25 or have two living children, but most doctors want you to have both. I'll be 30 in March, but since I don't have and don't want children it's very unlikely I find someone who is willing to do the surgery.
@@bjf8962 you can ask all you want, I really have no problems talking about it
Thaise Athayde I understand. I can’t take birth control either because my body just doesn’t like it. I use basically the same method you do to avoid pregnancy. It’s unfortunate that you can’t get sterilized. I’ve had friends male and female that wanted to get their tubes tied or a vasectomy but Dr.s wouldn’t do it because they were “too young”. You know your life and your body and should be allowed to do as you choose with it, if it’s not harming others. It’s not fair or fun to have that lingering fear of pregnancy but can’t 100 percent prevent it. Thanks for the reply to a personal question, I hope you take care 🤗
@@bjf8962 no problems :)
I have one male and one female friend, same age as me, no children, that were able to get sterilized, but it was very difficult for them too.
I have the additional problem that surgeries are riskier in me, I'm recovering from a breast reduction (I was an H cup and my back couldn't take it anymore) and it's taking so much longer then normal, surgery was also more complicated, longer stay at the hospital, blood transfusion...
Doctors can also refuse to sterilize me because I'm a complicated patient and leave me in risk of a dangerous pregnancy.
The main symptom of my mom was how risky pregnancy was. She lost 10, needed C-sections in the two she was able to keep and almost died during birth.
Love from MD ❤️. EDS3 here!
What a great mum xx
my daughter has a lot of health issues too and I just wanted to say that your mom did a great Job
You're both amazing
💗My GIRL has Graves disease. We fight it as a family of 3. Her, sister, ME!!!💗Much kindness!
Hehehe Even when you are sick you still gotta do right! ~ mom (in a way, I could've swore I heard your mom say that.) :)
how do you balance school and your chronic illness?
your a miracle.
You are a very beautiful and strong young lady!
❤️💙 Aww Cute! 💙❤️
Hi mom your amazing.
I should do this with my mom I have gastroparieses
Do it! I would love to see it :)
I was wondering if you will be making a video about how you technically have dwarfism and the shots she gave you your whole life (I assume they are connected)?
Absolutely!!
Yes, I'm new too- would be very interesting. What a lovely Mum you have!❤️from AustraliaXX
Aw, sweet girl! Jesus loves you sister!! ♡
🤪😝😍😍😍😍😍😛😝😂😂😂😂😂😆😛😛😛😛😛😛😛🤪🤪🤪🤪🤪
Hey Mickey you’re totally awesome.
Living with stripes can’t be fun. I have a cousin who has a rare disease. It’s called wolfersshots Syndrome and I feel really bad for her because she will never learn to do the things I have done.
I’ve learned a lot being disabled myself and I just wanted to say everyone who has disabilities is very strong.
My mom said she would never acess my port
What camera would you suggest for me to get for vlogging? I was thinking about the Sony xr3000 ? Wot camera do you use ? Sorry not topic related and cool q&a 👌
I have the Canon G7x Mark ii. It has amazing quality and is lightweight! I highly recommend it! I have also heard many good things about the Sony xr3000 and both are great options :)
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I have my first rheumatology appointment on February 8th, and I was wondering if you have any tips?
Cora Bailey Hi! My name is Max and I see a rheumatologist. Be aware that you may need to do blood work, or x-rays. It really depends on what conditions or symptoms you have. I see my my rheumatologist for juvenile arthritis and Ehler Danlos Syndrome. At first I was frustrated because the doctor couldn't determine my diagnosis. But now I realize that a diagnosis doesn't really matter. I trialed many different medications to find the right combination. I suggest bringing a list of the symptoms you are having, your medical history, medication list, prior diagnosis', etc. The first appointment is usually long because you need to tell them about your health anything and everything from birth till now. If you are getting weird rashes, joint swelling, red hot joints, discoloration or other visible clues I recommend bringing a picture. I had to take pictures of my knees with my phone for my rheumatologist. Bring a game or activity you're interested in to spend the time. I hope your appointment goes well! I'm sending you good thoughts! Bye
Max Nodwell thank you
Cora Bailey thankyou for asking this question as I was just going to say the same sort of thing as I am going to see them on the 28th about possibly having EDS and other health problems? And I was just going to ask how did you get a diagnosis of EDS and what sort of test do they do? I hope that it goes well and I hope that you get the answers you need. I will be thinking of you. Take care and God bless you all the best. Xxx
Max Nodwell thank you very much for your answer it really helped me to roughly understand what might happen when I see them on 28th for a possible diagnosis of EDS and to ask them about other health issues my body has. What sorts of tests did you have for EDS? I know every doctor, hospital and country is different but I will at least have a sort of idea what they might do? I am extremely hospital phobic and have bad panic attacks even though I spend quite a lot of time at different appointments so just to roughly know what might happen and what sort of tests they might need will help me out cause I will sort of understand what they might do. Once again thank you very much for answering the other person question but it will help me to roughly know what will happen. Take care and God bless you. Xxx
kelli shone Hi! I definitely wasn't diagnosed with EDS on the first day. But I had really vague seemingly unrelated symptoms. There is a new criteria to test for EDS. They check if you can touch your thumb to your wrist, if your fingers bend back over 90°, if you can touch your palms flat on the floor, if your knees or elbows bend backwards a certain amount, etc. With suspected EDS they may refer you to a geneticist like I was. Depending on what type of EDS they suspect you may need a EKG for your heart, or further genetic testing. For hEDS the most common type is all based on symptoms as they haven't found the gene yet. Mostly it's just a lot of talking and then they do a quick examination of your body (height, weight, joints, walking in a line, blood pressure, etc.) A rheumatologist never wants you to get hurt so just be open and let them know if you can't do something. I go to a children's hospital in Canada if that helps. Best of luck! I know you will do well. Bye
You are beatiful.
Some of this sounds vaguely familiar. Always remember, special needs children have special needs parents. You have to take care of yourself in order to take care of your child.
Is that really your mom?
I have to say I’ve struggled with doctors, I have dystonia witch is an abnormal muscle disorder and one doctor said it was in my head because I would get upset cause really wasn’t getting answers in the beginning
Hey
Is this disease in the family? Your mother seems so nice. Say hi to her. Also why do you wear a hat?
Come to our church. We will pray for you. You will get recover from illness.