I needed this so much suck in severe chronic illness burnout. Nobody understands how exhausting managing help is. Currently journaling while listening.
This hits so close to home, I needed to pause bc I hear myself, so tired of trying not to sound ‘crazy’ - but it’s too late. I’ve been drowning in cortisol way too long & my body is completely broken down. 8 of the past 9 surgeries ultimately resulted from chronic mental and physical stress. When I have good days I find I use that type of adrenaline to try catching up on so much life lost to total overwhelm and breakdown. And help dwindles when you may need it more than ever. Times like this it’s not a relief to see I’m not alone in the burnout. I am P*SSED that anyone should experience this. I’m angry bc I want to defend you. Which helps me remember I’m supposed to defend MYself with the same level of compassion but guess what? 20 yrs of hinting I’m crazy absolutely takes a toll. Sometimes it’s too exhausting fighting for truth in all this gaslighting. Utterly heart-breaking. ‘Your body keeps the score’ (book) has been a game changer in understanding what’s happening and why. YOU have been a game changer in my ability to keep going no matter how low I’ve been pushed. I write just as fast and ‘crazily’ as I talk now. Only here do I feel okay not explaining myself into worthiness. Is safe here and I know so many thank you for that.
@@diannethomas3536do you have fybromyalgia as ime unsure if I have leaks I don't have conventional migraines anymore it's upper body shoulders in constant any help appreciated
Thank you so much for talking about this. The validation was needed so bad I almost started crying. I have my own chronic health issues. But I'm also the parent of two chronically ill young children (chronically ill kids are 3 and 6. The other two are 4 and 7) and it's exhausting mentally. It's taxing in a way I can't describe. And no one seems to get it. As the primary parent it's all so much all the time.
That ultrasound joke is comedy gold!! 😂 I seriously cracked up! That helped with my current cluster headaches and broken leg and lumbar back pain are too much all at once grumpiness. Thanks! 🤗 ❤
This really resonated with me. After multiple procedures and years of being bedbound there are no more cards or casseroles coming anymore. And just trying to explain my daily life to others can be exhausting. People aren’t sure how to react to an illness that lingers on for so long and one with so much ambiguity.
Please let me say Thank You for finding the strength to deal with the stress of dealing with Buddy's health crisis. We understand that you are not healthy yourself and are also a mother of 2 young babies. All of your fans of your RUclips channel have bonded with you and with Buddy. We would all be devastated if something happen to you but we are also devastated to hear Buddy has a tumor and needs his own surgery and we have been Praying for you to find the strength to deal with Buddy also. We love Buddy as much as we love you. Good Luck.
Burnout is very understandable. It’s a frustrating loop. Takes so much effort to live life with a chronic problem and it takes a lot of energy to get help.
You’re on my prayer list to heal. I can’t imagine what you are going through. I had three months of this spinal leak this last summer. I had two blood patches and am feeling wonderful. I am 78 and don’t have all the responsibilities that you are dealing with at this time. I am praying for you.
Thank you for being open, and talking about how most of us chronic folks feel on a day to day. Some better, some worse, but this channel is our compassion space, were we can learn, help, write, and listen for support to and from each other. It’s nice to have an open space like this.💖✨🦋
Hey, sitting here witnessing. I understand what’s happening times a hundred. I’ll write more when I can but I too and burnt to the point that I have withdrawn any remaining support until the end of the year out of desperation (because I truly don’t think I’ll manage continuing to breathe if I don’t for now). Praying and totally in your corner! Love to celebrate the wins and commiserate the hardships (and yep this is one and it is justified!) even when they happen at the same time.
Thank you for being so open and honest! I am always glad to be your shoulder, because you have been there for me when I needed encouragement. I am not going to say you got this, because we all know you do. What I want to say is the thing I think this channel is built on: I get you. We all understand the struggle and the stress. We can't take it away, because it is often the result of something we need, but we can share the load. Vent, cry, complain, ramble, and laugh. We will be here to help as we can. That is what this channel is for. We have a loving community of people who just really get it. I feel truly blessed to be part of it. ❤❤❤❤
Thank you for being so vulnerable to share all of these things that you’re going through. It’s very helpful as we go through these things to know that we’re not alone. Time in the Word can be very refreshing and comforting. I love that you mentioned spending time in the Word!!❤
Literally cannot empathize more. As someone with 12 surgeries under my belt and one spinal tap/ Ct searching for a leak we didn’t find and now moving to next steps. In the beginning everyone is so helpful and they are constantly checking in and then it’s just another surgery or another patch or another tap yet for us it’s even more exhausting than the firsts. Like you, I do all the planning myself and have a 16 month old. Sometimes it would so much easier to go heal on a private island. The explaining is soooooo annoying, most people don’t even know what CSF is!!! Ugh I’m here with you, girl. I have my second opinion this week. Sending prayers and hope for you. I’ve been following along to know what to expect and it’s rough. 😢
im watching this while getting ready for a musical im doing while i have a migraine and thinking about how hard it is is a lot, i dont know to put it into words
Totally get it. I am so exhausted with feeling I am in a good place and then doctor randomly changes my medicine therapy and wanting to send me somewhere else. On top of that I am co-caretaking for my Mom. She has been having chronic recurring infection for over a year. So many appointments and antibiotics and it never all the way gets better. One infection clears but immediately another one occurs. Last night I had a panic attack. It's all just too overwhelming. Today I stayed in bed. Feel better Jen!
Lots of luck Jen with the future procedures. I’ve had two blood patches, getting Ct myelogram soon. Some drs really think it’s all in your head because of their lack of knowledge on CSF leak. We physically might look fine but internally we don’t. I was told by my Dr that my hole keeps closing and reopening on its own. I have symptoms of intracranial hypertension and hypotension. You can’t have a normal life. I really hope you can get back to normal soon so you can enjoy and be there 100% for your kids. Stay strong and lots of luck.
Thank you for talking about this and drain it is dealing with all the appts and feeling like you want to back off into your cocoon. I've been going through this lately and finally getting the process of preassessment for EDS before being put on the waitlist for the only clinic in the entire country (Canada) for it with an up to 24mth wait. I'm usually drained enough already this time of the yr then add this on top of things and extra exhausted. I'm glad that it seems things are lining up and someone's finally listening but it's still exhausting to go through the process to get there. I love my people that support me but as you said sometimes it can be overwhelming and sometimes easier to just be quiet than to explain everything all the time and to have all the things that go along with that. I also try to not bother anyone because I don't want to over burden anyone else
I am exhausted. I am here at Ceders and had all the testing and go fot patching on Tues. I am so excited and nervous at the same time. This is my thirs patch but first at Ceders.
I wish I could be this kind to myself, and be okay about the fact that I AM exhausted. I have chronic mental illnesses since 20 years and meet with the psychiatry on at least a weekly basis. I've been treated horribly some times, and great some times. It is so emotional even going to that place, knowing I've been inpatient there sometimes, and euphoric and hypomanic sometimes. To add to my chronic stress and trauma-memories, I had a BLOOD CLOT in September. Yes, a real-life blod clot, that I went with for 2 weeks because I didn't seek help. Why? Because I was certain of being brushed off and ridiculed by the doctors, resulting in depression and despair, which is what usually happens when I seek care. I had internalised so much of the "you're too sensitive and over-exaggerating" the health care told me that I literally put my life to risk. If I had died it hadn't really been my fault, but the fault of all the doctors that have treated me shitty and rude over the decades... Anyway. I'm EXHAUSTED! I have anxiety 24/7 on a normal day, and now I had a life-threatening condition! I'm still on blood thinners, and I can't focus on anything else that this. Am I sitting too long? Oh, a small pain in my hand - another blood clot? What if I got the clot because I was unhealthy? (It was because of a hormone pill.) I need to walk more! Exercise more! Eat only healthy food! Oh, did I mention I've suffered from very severe anorexia that still isn't completely gone? Wohoo, great reason for blaming myself and my eating/exerceise. Thing is, I still blame myself for being tired. Seriously - it's been 2 months, get over it! Even though it takes me two days to recover from 2 hours of social interaction, apparently I'm supposed to just forget I almost died. And I don't do what I'm "supposed" to, working on the books I really, really want to write. No, I'm just tired or do other things that aren't as challenging - and blame myself for being lazy! Maybe it's okay to be chocked and exhausted after an experience like this, when you only lived with 20% battery every day (compared to 100% for healthy people) before this even took place. Maybe I need to be kinder to myself. I can't though...
You should be exhausted after all of that!! Even after months. I believe it takes the body a while to release the mind's trauma, if that makes sense. Be kind to yourself 💜
Yeah I’m in a similar boat. My symptoms are literally 50/50 (scoliosis causing neuro issues, theres treatment but in scoliosis world hard to get help) Don’t give up and cherish the good days until you can get things right 👍
I see and love what you are doing. Thank you for your vulnerability and honesty in all your videos. I truly do admire your bravery in every way, from getting real and bringing to light what many people experience with doctors and specialists in healthcare, to sharing your experiences and your life so openly and true. Many people give up after years of trying to help themselves because of the opinions of some doctors who shouldn’t even be in that field, who lack compassion & knowledge and do it for the paycheck. Your videos make people want to hang in there and not give up on themselves. If you feel something is not right in your body, don’t give up until you find someone who will journey with you to find the root of the cause. It just might give you your life back. That’s the overall message I get from your videos. And I take that in 😊 God bless you and your beautiful family in every season that your journey brings. Ps also for reminding people how tough “invisible” chronic illness can be on the one who is dealing with it and the people who suffer alongside. No one wants to live that way so it boggles my mind how some doctors and just some people in general can be sooo.., in a sense cruel with their perception of people who struggle just to live life with chronic illness.
Thank you, this was heartwarming and I appreciate the heart connection. Agreed on that last bit - like yeah I LOVE being broke and on meds and getting poked. Way better than being healthy *sarcasm* 😅
❤ Right exactly! It’s so fun 😂 I appreciate your humor throughout it all as well. Your energy n realness is refreshing and again, admirable. Got ya in my prayers girly, as well as your family. Keep up the amazing hard work! It’s so encouraging. You got this! 🤗
Trust me, you aren’t alone. I finally saw a neurologist here in Georgia to find out I have to be an established patient for 2 years before they will refer me to file for SSDI. I was already denied 4 times in Texas. But hey during these next 2 years let’s try medication roulette again with stuff that has less than 25% chance of doing anything for my type of migraine. How about y’all pay me for playing roulette this time? I’ve been at this for 12 years now.
It is funny, I could have made this video today and I am so sick of negative test but I am struggling with imposter syndrom and I have no reason to be feeling anything but a full time permanant patient and I dont have kids. Thank you for showing me reality and I am not alone.
Hey Jen, I absolutely get what you are talking about. I am having my major surgery on November 6, and I’ve been waiting for this surgery literally four years. In the last couple of months it’s been absolutely crazy. I’ve had no less than eight appointments between videos, phone calls, and in person visits. I only live 50 miles away from where my doctors are, so nothing near where you have to travel, and I am done with the back-and-forth. So I can only imagine how you feel, and I don’t have little kids. My children are in their 30s. My best advice to you, cut yourself some slack. Feel whatever it is you need to feel, react however it is you need to react, and if “they” don’t understand, not your monkey not your circus, not your problem. Anybody that’s got your sixth is going to support you regardless. So whatever you need, let them help, it’s sometimes hardest to let other people help especially when it’s something that you know how you want to have it done. But my advice is just let them help. Give them something to do that makes them feel like they really can do something tangible to support you. And you just take it easy on yourself.
I will be thinking about you on the 6th!! We are going through so similar yet different. Different hards. Big hugs from ahardship. You have a cheerleader in me!
@@MommingwithMigraine Thank you. I’m so thankful that we both have doctors who really listen to us and our symptoms, and not just view them as complaints. It makes such a tough battle that we face a little easier to take. ❤ Thanks for your support, you definitely have mine. I’ll be sending up prayers for you, and your family including Buddy. 😊❤🙏🏼
@@alykil6333 thanks for asking. My surgery although complicated went well. Unfortunately I’ve had a couple of pretty bad setbacks, so I’m still in the hospital. I’ve got a good team of doctors this go round, and they’re doing their best to resolve these issues. It’s unfortunately going to take more time to recover.
I can imagine how you're feeling....so much going on for you for so long. I'm done with all this nonsense after only 1yr+. I'm tired of doc appts and medication trials. I'm about to say NO MEDS and just go along the way I am, with no hope for change. That's what one doc told me - I've reached maximum medical improvement. I'm tired of people telling me "you look so good! You must be better!" NO, I'm NOT better 😤. God bless you, Jen. Stay strong, my friend. (blessings for Buddy too 🙏)
Yes, the struggle gets real, everyone has time and willing to help at first. but ya, everyone taking time off work, and spreading the load can only last so long before people start pulling back :(
Hey @jen love what your doing I stumbled upon you looking at service dog gear, and then notice the migraine thing (which just before I had spent probably 3 solid months or so bed ridden from daily migraine) then via you I've learned a lot and am by far by own advocate due to ignorance here. Thanks. Anyway which type of "tissue" do they tend to use with looking for a halo sign. I'd like to try one at home to use to solidify what my thinking is! Not for any legitimacy
I understand your stress. Recently a lot Has Been going on in my life too. Do You know, what helps me temporarly relax? The sounds of cracking / singing ice on Jonna Jintons channel and watching her videos full of nature
I needed this so much suck in severe chronic illness burnout. Nobody understands how exhausting managing help is. Currently journaling while listening.
This hits so close to home, I needed to pause bc I hear myself, so tired of trying not to sound ‘crazy’ - but it’s too late. I’ve been drowning in cortisol way too long & my body is completely broken down. 8 of the past 9 surgeries ultimately resulted from chronic mental and physical stress. When I have good days I find I use that type of adrenaline to try catching up on so much life lost to total overwhelm and breakdown. And help dwindles when you may need it more than ever. Times like this it’s not a relief to see I’m not alone in the burnout. I am P*SSED that anyone should experience this. I’m angry bc I want to defend you. Which helps me remember I’m supposed to defend MYself with the same level of compassion but guess what? 20 yrs of hinting I’m crazy absolutely takes a toll. Sometimes it’s too exhausting fighting for truth in all this gaslighting. Utterly heart-breaking. ‘Your body keeps the score’ (book) has been a game changer in understanding what’s happening and why. YOU have been a game changer in my ability to keep going no matter how low I’ve been pushed. I write just as fast and ‘crazily’ as I talk now. Only here do I feel okay not explaining myself into worthiness. Is safe here and I know so many thank you for that.
The chronic cortisol, the grace for everyone but me, loving being seen but HATE that you resonate... I FEEL this message.
I'm so tired too sick and tired of the symptoms and pain. Meds not working . The patches have had 3 already and the pain goes on fir two years. 😢😢
What illness operations has the cortisol caused I have heds fybromyalgia and wondering if it's caused some of mine
@@diannethomas3536do you have fybromyalgia as ime unsure if I have leaks I don't have conventional migraines anymore it's upper body shoulders in constant any help appreciated
You are totally right. You feel its hard because it IS hard.
One step at a time.
Thank you so much for talking about this. The validation was needed so bad I almost started crying. I have my own chronic health issues. But I'm also the parent of two chronically ill young children (chronically ill kids are 3 and 6. The other two are 4 and 7) and it's exhausting mentally. It's taxing in a way I can't describe. And no one seems to get it. As the primary parent it's all so much all the time.
That ultrasound joke is comedy gold!! 😂 I seriously cracked up! That helped with my current cluster headaches and broken leg and lumbar back pain are too much all at once grumpiness. Thanks! 🤗 ❤
Nothing blows off steam like a good belly laugh. Glad you loved it. Glad I decided to share it 😅
Also... Oh no! all of that. Are you serious??!!! My heart goes out to you
I’m glad you shared it, too. And yep thank you. I’ll get through it. 🤗🙂
This really resonated with me. After multiple procedures and years of being bedbound there are no more cards or casseroles coming anymore. And just trying to explain my daily life to others can be exhausting. People aren’t sure how to react to an illness that lingers on for so long and one with so much ambiguity.
Do you have migraine so true
It was a hysterical joke because it was so unexpected and unused as a joke. 😂❤❤❤ and really witty. New material!. Love it!
Please let me say Thank You for finding the strength to deal with the stress of dealing with Buddy's health crisis. We understand that you are not healthy yourself and are also a mother of 2 young babies. All of your fans of your RUclips channel have bonded with you and with Buddy. We would all be devastated if something happen to you but we are also devastated to hear Buddy has a tumor and needs his own surgery and we have been Praying for you to find the strength to deal with Buddy also. We love Buddy as much as we love you. Good Luck.
Thanks so much sweet friend
Burnout is very understandable. It’s a frustrating loop. Takes so much effort to live life with a chronic problem and it takes a lot of energy to get help.
❤️ sending love your way. Same.
You’re on my prayer list to heal. I can’t imagine what you are going through. I had three months of this spinal leak this last summer. I had two blood patches and am feeling wonderful. I am 78 and don’t have all the responsibilities that you are dealing with at this time. I am praying for you.
I love to hear success stories!! Thank you for the prayers, the most powerful thing we can do.
What are your symptoms ime diagnosed chronic migraines in the body no headache
Thank you for being open, and talking about how most of us chronic folks feel on a day to day. Some better, some worse, but this channel is our compassion space, were we can learn, help, write, and listen for support to and from each other. It’s nice to have an open space like this.💖✨🦋
Hey, sitting here witnessing. I understand what’s happening times a hundred. I’ll write more when I can but I too and burnt to the point that I have withdrawn any remaining support until the end of the year out of desperation (because I truly don’t think I’ll manage continuing to breathe if I don’t for now).
Praying and totally in your corner! Love to celebrate the wins and commiserate the hardships (and yep this is one and it is justified!) even when they happen at the same time.
Thank you. Rooting for you
Thank you for being so open and honest! I am always glad to be your shoulder, because you have been there for me when I needed encouragement. I am not going to say you got this, because we all know you do. What I want to say is the thing I think this channel is built on: I get you. We all understand the struggle and the stress. We can't take it away, because it is often the result of something we need, but we can share the load. Vent, cry, complain, ramble, and laugh. We will be here to help as we can. That is what this channel is for. We have a loving community of people who just really get it. I feel truly blessed to be part of it. ❤❤❤❤
Thank you for being so vulnerable to share all of these things that you’re going through. It’s very helpful as we go through these things to know that we’re not alone. Time in the Word can be very refreshing and comforting. I love that you mentioned spending time in the Word!!❤
You're welcome!! It really is the best thing but I have to be careful bringing those things up because it throttles the reach for the algorithm
Literally cannot empathize more. As someone with 12 surgeries under my belt and one spinal tap/ Ct searching for a leak we didn’t find and now moving to next steps. In the beginning everyone is so helpful and they are constantly checking in and then it’s just another surgery or another patch or another tap yet for us it’s even more exhausting than the firsts. Like you, I do all the planning myself and have a 16 month old. Sometimes it would so much easier to go heal on a private island. The explaining is soooooo annoying, most people don’t even know what CSF is!!! Ugh I’m here with you, girl. I have my second opinion this week. Sending prayers and hope for you. I’ve been following along to know what to expect and it’s rough. 😢
im watching this while getting ready for a musical im doing while i have a migraine and thinking about how hard it is is a lot, i dont know to put it into words
It really is just that. A lot. It is neverending and a lot. I hope you have fun tonight, despite your migraine 💜
Hang in there Jen.. it seems like shell shock now but as you say when it's all done, it will be worth it.
SHELL SHOCK I needed that. Yeah. Spot on. I recognize it's just a jolt and I'll pull through. Thanks friend.
This too shall pass.
And indeed it did 💜
Totally get it. I am so exhausted with feeling I am in a good place and then doctor randomly changes my medicine therapy and wanting to send me somewhere else. On top of that I am co-caretaking for my Mom. She has been having chronic recurring infection for over a year. So many appointments and antibiotics and it never all the way gets better. One infection clears but immediately another one occurs. Last night I had a panic attack. It's all just too overwhelming. Today I stayed in bed. Feel better Jen!
Lots of luck Jen with the future procedures. I’ve had two blood patches, getting Ct myelogram soon. Some drs really think it’s all in your head because of their lack of knowledge on CSF leak. We physically might look fine but internally we don’t. I was told by my Dr that my hole keeps closing and reopening on its own. I have symptoms of intracranial hypertension and hypotension. You can’t have a normal life. I really hope you can get back to normal soon so you can enjoy and be there 100% for your kids. Stay strong and lots of luck.
Thank you for talking about this and drain it is dealing with all the appts and feeling like you want to back off into your cocoon. I've been going through this lately and finally getting the process of preassessment for EDS before being put on the waitlist for the only clinic in the entire country (Canada) for it with an up to 24mth wait. I'm usually drained enough already this time of the yr then add this on top of things and extra exhausted. I'm glad that it seems things are lining up and someone's finally listening but it's still exhausting to go through the process to get there. I love my people that support me but as you said sometimes it can be overwhelming and sometimes easier to just be quiet than to explain everything all the time and to have all the things that go along with that. I also try to not bother anyone because I don't want to over burden anyone else
🥺💜 Cocoon - that's the need. And feeling like a burden is 1000099900% me right now yes!!!
I am exhausted. I am here at Ceders and had all the testing and go fot patching on Tues. I am so excited and nervous at the same time. This is my thirs patch but first at Ceders.
I wish I could be this kind to myself, and be okay about the fact that I AM exhausted. I have chronic mental illnesses since 20 years and meet with the psychiatry on at least a weekly basis. I've been treated horribly some times, and great some times. It is so emotional even going to that place, knowing I've been inpatient there sometimes, and euphoric and hypomanic sometimes.
To add to my chronic stress and trauma-memories, I had a BLOOD CLOT in September. Yes, a real-life blod clot, that I went with for 2 weeks because I didn't seek help. Why? Because I was certain of being brushed off and ridiculed by the doctors, resulting in depression and despair, which is what usually happens when I seek care. I had internalised so much of the "you're too sensitive and over-exaggerating" the health care told me that I literally put my life to risk. If I had died it hadn't really been my fault, but the fault of all the doctors that have treated me shitty and rude over the decades... Anyway.
I'm EXHAUSTED! I have anxiety 24/7 on a normal day, and now I had a life-threatening condition! I'm still on blood thinners, and I can't focus on anything else that this. Am I sitting too long? Oh, a small pain in my hand - another blood clot? What if I got the clot because I was unhealthy? (It was because of a hormone pill.) I need to walk more! Exercise more! Eat only healthy food! Oh, did I mention I've suffered from very severe anorexia that still isn't completely gone? Wohoo, great reason for blaming myself and my eating/exerceise.
Thing is, I still blame myself for being tired. Seriously - it's been 2 months, get over it! Even though it takes me two days to recover from 2 hours of social interaction, apparently I'm supposed to just forget I almost died. And I don't do what I'm "supposed" to, working on the books I really, really want to write. No, I'm just tired or do other things that aren't as challenging - and blame myself for being lazy!
Maybe it's okay to be chocked and exhausted after an experience like this, when you only lived with 20% battery every day (compared to 100% for healthy people) before this even took place. Maybe I need to be kinder to myself. I can't though...
You should be exhausted after all of that!! Even after months. I believe it takes the body a while to release the mind's trauma, if that makes sense. Be kind to yourself 💜
Yeah I’m in a similar boat. My symptoms are literally 50/50 (scoliosis causing neuro issues, theres treatment but in scoliosis world hard to get help)
Don’t give up and cherish the good days until you can get things right 👍
I see and love what you are doing. Thank you for your vulnerability and honesty in all your videos. I truly do admire your bravery in every way, from getting real and bringing to light what many people experience with doctors and specialists in healthcare, to sharing your experiences and your life so openly and true. Many people give up after years of trying to help themselves because of the opinions of some doctors who shouldn’t even be in that field, who lack compassion & knowledge and do it for the paycheck.
Your videos make people want to hang in there and not give up on themselves. If you feel something is not right in your body, don’t give up until you find someone who will journey with you to find the root of the cause. It just might give you your life back. That’s the overall message I get from your videos. And I take that in 😊
God bless you and your beautiful family in every season that your journey brings.
Ps also for reminding people how tough “invisible” chronic illness can be on the one who is dealing with it and the people who suffer alongside. No one wants to live that way so it boggles my mind how some doctors and just some people in general can be sooo.., in a sense cruel with their perception of people who struggle just to live life with chronic illness.
Thank you, this was heartwarming and I appreciate the heart connection. Agreed on that last bit - like yeah I LOVE being broke and on meds and getting poked. Way better than being healthy *sarcasm* 😅
❤
Right exactly! It’s so fun 😂
I appreciate your humor throughout it all as well. Your energy n realness is refreshing and again, admirable. Got ya in my prayers girly, as well as your family. Keep up the amazing hard work! It’s so encouraging. You got this! 🤗
Trust me, you aren’t alone. I finally saw a neurologist here in Georgia to find out I have to be an established patient for 2 years before they will refer me to file for SSDI. I was already denied 4 times in Texas. But hey during these next 2 years let’s try medication roulette again with stuff that has less than 25% chance of doing anything for my type of migraine. How about y’all pay me for playing roulette this time? I’ve been at this for 12 years now.
A long and messy road! I'm not on ssdi either 💜
It is funny, I could have made this video today and I am so sick of negative test but I am struggling with imposter syndrom and I have no reason to be feeling anything but a full time permanant patient and I dont have kids. Thank you for showing me reality and I am not alone.
The negative tests just worsen the imposter syndrome 😮💨 you're welcome. We're in this together.
@@MommingwithMigrainethe only thing worse than a negative test is a positive test. Thank you for taking the time to interact.
Hey Jen, I absolutely get what you are talking about. I am having my major surgery on November 6, and I’ve been waiting for this surgery literally four years. In the last couple of months it’s been absolutely crazy. I’ve had no less than eight appointments between videos, phone calls, and in person visits. I only live 50 miles away from where my doctors are, so nothing near where you have to travel, and I am done with the back-and-forth. So I can only imagine how you feel, and I don’t have little kids. My children are in their 30s. My best advice to you, cut yourself some slack. Feel whatever it is you need to feel, react however it is you need to react, and if “they” don’t understand, not your monkey not your circus, not your problem. Anybody that’s got your sixth is going to support you regardless. So whatever you need, let them help, it’s sometimes hardest to let other people help especially when it’s something that you know how you want to have it done. But my advice is just let them help. Give them something to do that makes them feel like they really can do something tangible to support you. And you just take it easy on yourself.
I will be thinking about you on the 6th!! We are going through so similar yet different. Different hards. Big hugs from ahardship. You have a cheerleader in me!
@@MommingwithMigraine Thank you. I’m so thankful that we both have doctors who really listen to us and our symptoms, and not just view them as complaints. It makes such a tough battle that we face a little easier to take. ❤
Thanks for your support, you definitely have mine. I’ll be sending up prayers for you, and your family including Buddy. 😊❤🙏🏼
How’d you’re surgery go? Hoping you have a quick safe recovery
@@alykil6333 thanks for asking. My surgery although complicated went well. Unfortunately I’ve had a couple of pretty bad setbacks, so I’m still in the hospital. I’ve got a good team of doctors this go round, and they’re doing their best to resolve these issues. It’s unfortunately going to take more time to recover.
I can imagine how you're feeling....so much going on for you for so long. I'm done with all this nonsense after only 1yr+. I'm tired of doc appts and medication trials. I'm about to say NO MEDS and just go along the way I am, with no hope for change. That's what one doc told me - I've reached maximum medical improvement. I'm tired of people telling me "you look so good! You must be better!" NO, I'm NOT better 😤. God bless you, Jen. Stay strong, my friend. (blessings for Buddy too 🙏)
I laughed so hard at your joke! 😂 Thanks for being real with us. I'd have skipped the shower. 😜
I can relate to this quite well especially over the last month. Thanks for sharing Jen!
Dang ☹️ you're welcome- in it together
I hear you, gurl! So burned out 5:15 😵💫😢
I totally get it. I’m having another surgery on Sunday in London UK. I would totally help you 😊
Hope it goes well 🙏 stay strong
I feel you, Jen. The burnout is so real..............
Dory makes it sound so easy to just keep swimming
I have been feeling that way for awhile and in general.. I’m just exhausted. Trying to be productive and purposeful and helpful but just worn out.
All this. The lack of breaks 😮💨
Happy to know that you get postdrome grump and it's normal. ❤❤❤
Yay for showers! 😃I hope you can get lots of rest.
Really really needed this video today!
Huge hug for you 🤗
I so get this. Xo
Yes, the struggle gets real, everyone has time and willing to help at first. but ya, everyone taking time off work, and spreading the load can only last so long before people start pulling back :(
Hey @jen love what your doing I stumbled upon you looking at service dog gear, and then notice the migraine thing (which just before I had spent probably 3 solid months or so bed ridden from daily migraine) then via you I've learned a lot and am by far by own advocate due to ignorance here. Thanks. Anyway which type of "tissue" do they tend to use with looking for a halo sign. I'd like to try one at home to use to solidify what my thinking is! Not for any legitimacy
I understand your stress. Recently a lot Has Been going on in my life too. Do You know, what helps me temporarly relax? The sounds of cracking / singing ice on Jonna Jintons channel and watching her videos full of nature
Burnout really gets thrown onto the end of anything these days lol sorry for your struggles though
Which is why true burnout is brushed off as too sensitive, isolating those people even more.
Out of curiosity what hospital or clinic/facility do you travel to for this? Duke, mt sanai?
Burnout is like my twin by now.
Oh and we are conjoined everywhere my twin and I.
Time for a family nap, the twins and us 😮💨