Im a retired hospital pharmacy tech. I've actually mixed the IVIG. These infusions are not fun. But you will begin to feel better soon. And I will be praying for you every time I sit down to do my devotions. You do whatever you need to do for you and your family. That said, I just today spoke to a Dr. who actually HEARD ME!!! I've been struggling with an illness and was dismissed. Oh you have to expect these things because your 65 yrs old now. I finally just asked God to specifically send me to a Dr. who would hear me. And today he did. So I hear you and I feel you. Hang in there sweetie. Know that you guys are added to my prayer life. ❤❤❤
"When you're ill yourself and you're the caregiver of someone who is ill"...my story. Lifetime illness and caretaker of my adult daughter. Totally understand medical gaslighting and the trauma of not being heard. Sending you hugs and prayers that the ivig helps you feel so much better! xoxo
I’m a retired nurse so I totally understand all of this… and so glad that you were finally diagnosed after all these years.. agree we have to be our own advocate .. I just want to give you a hug.. you are such a beautiful person inside and out and you deserve to be understood !! God less you and will continue to pray for you and Jason .. Please continue your channel and I so enjoy your vlogs. Sending love to you !
Thank you so much for sharing, Leslie. I’ve been sick my entire life (I’m 55) and I just don’t even talk about it with doctors anymore because I never get any answers or help and I feel like I’m being perceived as a hypochondriac. I always get sick - as a kid I got severe tonsillitis constantly up through teenage years, missed so much school. Used to have continual UTIs, yeast infections, swollen lymph nodes. If anyone around me has a cold or flu I’m guaranteed to get it but it always hits me much harder and much longer than it does them. I hurt all over every day. You’ve made me think that maybe I should go to see an immunologist! I’ll be praying for you, my sister-in-Christ! ❤
@@lisa.1771 PLEASE consider mykotherapy medicinal mushrooms to strengthen your immune system naturally. There's great information all over the internet and the mushrooms are to be found for free in your local forest. 👍👍
Wish I could give you a big hug. Retired nurse here. This speaks volumes. Praying the immunotherapy goes well. From a childhood Christian song,” You are precious in His sight” this is a ministry. 🙏🏻💗
It took 40 years before I was taken seriously and diagnose with FM and ME/ CFS. I also care for my husband with ALZ. I’m so glad you shared this. Yes, we are in the Lord’s care and His plans are good. I’m praying for you🙏🏻💕
Leslie, I had no idea that you were dealing with sickness. Thank you for sharing your story and being vulnerable with your viewers. I'll be praying for you.
You are me accept you handle it better. I sat watch with tears. I have been on IVIG for about 14 years. I feel your frustration. In addition I had Covid Pneumonia in December and now have been diagnosed with long Covid. Talk about making things worse.
I am the parent of two critically ill/disabled children. One has left us and one is in her late twenties. There is absolutely no question that this level of intense caregiving has negatively impacted my health. Despite that, there is no question of stopping. Your voice reaches so many, thank you for raising this issue and having this discussion. 💜
Thank you for sharing your journey with us. I don’t feel so alone. I Have rheumatoid vasculitis & care for my husband/w dementia. Had to advocate for a specialist for auto immune issue also. Prayers, hugs & healing to you You’re an amazingly strong & beautiful person God bless you 🥰🙏🙏🙏
Can’t believe how many female Drs/GPs/specialist are dismissive with women!! Like myself. Whats up with THAT?? I’ve pushed back far too many times and at 63 I’m frankly getting tired of it. I’m like Leslie..I push thru every single, solitary day and do quite well considering how much pain I’m in or struggling. Thanks for identifying medical gaslighting..what a perfect analogy!
I want to say thank you to you and all nurses. My medical experience is that nurses tend to know more than doctors do generally speaking. I understand there are some technical things about more complicated medical issues that doctors do know more about, however. Nurses see and hear everything everyday, over time you start learning things on your own. Nurses are the ones that take all the information and listen to the patient say what is going on, I presume this also has a lot to do with them being more competent than many doctors! 😆
Oh Leslie! I was a hospital administrator for several years and my boss who was an RN had her breast cancer dismissed as nothing by 2 drs before she saw the third who confirmed what she felt. Such a great video to advocate for people to be their own medical champion. It's a MUST. PS I know how hard it is to care for someone when you feel bad as I am caring for a friend with dementia and have been sick myself with covid. Hang in there, you are right Jesus loves us! xoxo
It doesn’t always have to be “enjoyable” content! This was very informative and I’m sure there will be a lot of people that will be grateful for you being so honest and transparent! Thank you!
Finally after all of these years, you have a diagnosis! What a weight off of your chest-we love Leslie no matter how many breaks you take, you are not alone! Take care of yourself and congrats on taking a chance and making that appt. with a new P.A. This is a major breakthrough for you! You and Jason are in my prayers.
As a fellow RN, I hear you loud and clear. So glad that you were able to use your venue, to spread the word. Proud of you for finally putting yourself, maybe not first, but higher on the ladder. Continue to be your beautiful self... 🙏
Hi Leslie, I’m also a retired nurse and it’s so frustrating to get dismissed. When I was working, the pressure was to see as many patients as possible so the providers just didn’t have the time to spend with our patients. After years of this, I just couldn’t take it anymore and just retired. Thank you for highlighting this very real issue and encouraging us to be our on advocates! God bless you and Jason and I’ll be praying for good success with your treatment. ❤️Becky
I just went to my doctor and told her something is not right. I keep getting sick and her response was “ do you know how many people come in saying that now days ?!!! 😢…Thank you so much for making this video, such good information. God bless you🙏
This is one of the best videos you've ever made. It's always about stuff or Jason and hearing about you is also what we're interested in too. To hear you as a great advocate to encourage others to push and advocate for themselves. We cannot care for others if we don't care for ourselves first. Make what videos you can, when you can. Hugs to YOU!!!!!
Oh Leslie, you made this for me. Your story is incredibly familiar. I am mysteriously chronically ill (currently been sick for a month with 3 different illnesses). …I started to share more of my story with you just now and deleted it all. I realized I simply want to say what I wish I heard more often: I hear what you are (and are not) saying. I see how strong you are (even the beautiful strength in your weakness). I understand that place of existence between uncompromising faith and just trying to survive yet another round of the really, really hard. And I honor you, my sister in Christ, for your courage in showing His light in darkness. Thank you, to infinity, for sharing. (I’m going to go be my nerdy self and research your diagnosis. Who knows, maybe that will lead to answers of my own! ❤
I hear you, Leslie. I, too, have a chronic illness (Sjogrens Syndrome), and I, too, am the caregiver for my husband who has Lewy Body Dementia. There are days when I have a flare-up and feel like I have the flu, but I have to keep going for him. I've also had to change doctors a few times until I found one that would really listen. You're not alone, and I wish I could give you a hug. ♥️
Hi April. Can I ask you how you got diagnosed with Sjogrens syndrome? I was diagnosed with fibromyalgia 10 years ago but feel like there is more going on then that. I tried to get an appointment with Ruemetologist but have to see my GP first then he has to refer me. I need to have more tests or something to help me find out what is going on. Bless you in your journey 🙏
@@ruthmiller4513 It was a series of tests that started with a blood test that measures inflammation markers, then a biopsy of a saliva gland in my lower lip, and an eye dryness test called a Schirmer's test. My blood test was enough for the rheumatologist I was seeing at the time, so she diagnosed me without the other tests. The next rheumatologist I started seeing wanted it confirmed with the other two tests, so I went through those just to satisfy her protocol. Around the same time, I was diagnosed with Celiac disease--another autoimmune disorders. It was hard to tell which one was causing which symptoms for a while. I'm better now and inflammation markers have been normal for several years, but I tire easily and have lost a lot of strength. I hope you find some answers and solutions for what you are experiencing.
@@apriljohnson4793 thank you so much. I appreciate you letting me know. Hopefully I will get some answers soon because this has been such a struggle for so many years and as I get older it just gets worse. I'm happy to hear that your doing better. God Bless
I also have Sjogrens and it took good through 4 other rheumatologists before I found one that diagnosed me. He did labs - ANA, immunoglobulins, RF factor (positive in conditioner than RA), etc. But my Dr said it’s more than just labs. Keep pushing till you find a dr that will listen to you. Like Lesley said!
As a lifelong migraine sufferer (until 2 years ago) and the last 20 years of Fibromyalgia I can really relate. Thank God I don’t have to be a caregiver (so far) as I find it challenging just dealing with my own issues. Decorating videos are so much fun and takes our minds off other things but this is real life and we all need to know we’re not alone in our struggles. I often say to myself, “suck it up Buttercup, life isn’t supposed to be easy or pain free” but I will never stop looking for answers! You inspire so many people I just want to thank you and send His blessings your way. I’ll support you no matter how many videos you post.
Can I ask how you got rid of your migraines? I suffered too for MANY years. 14 to 16 a month. I literally have lesions / scarring on my brain from them. I was on so many of those instant meds. but they only ever worked just 1 time each for me. Then finally seizure meds that helped a bit. But the biggest cure for me (And I had zero idea) was my divorce. It's been almost ten years now and I went from that suffering to maybe 4 over the past entire 10 years put together!! My migraines were have to be in a black room. Zero sounds. Like the neighbor taking the garbage our 2 blocks away would kill me!! I'm so thankful for my divorce. They were literally life altering. Alot of people just don't get that. Im thankful you dont get them anymore! Congratulations!!!
@@COEXIST-ny4db I started getting them as early as I can remember like 3 years old. I had high hopes they would go away after menopause but they didn’t. I had every kind of test under the sun and tried every kind of drug. Imitrex injections finally ended the trips to ER. About 2 or 3 years ago I started taking Aimovig injections once a month. Finally, something that actually worked! My life was controlled by my migraines. I prayed for help in all those years and they were finally answered. Praise God!
@coexist2020 I can’t say that I have any experience with this but I recently heard a friend of mine saying that he used to suffer with terrible migraines until he had his blood thinned. He said that took care of it and he never had any more. I just thought you might like to look into that. Wishing you the best!!
Leslie I remember when this video came out, I too as a child up to present at 62 always sick. I use to receive gamma globulin until I was in my late 20’s , which helped! I started with a new primary and it was always well your under stress ,and I was most definitely because I was working and caring for sick parents 4 children and then my husband received a diagnosis that was terminal. I would end up in tears because I knew in my gut this is not just stress . Well I thought of what you said on here and asked God for the courage to have my hematologist do blood work AGAIN! I received a phone call stating I have low IgG subclass 1 , and low IgG subclass 3. Same questions were asked do you get sick a lot ? Yes! So I’m a candidate for immune globulin infusions. Thank you for your encouragement to advocate for myself. May God Bless you ! 🙏
OMG. This has been my life as well… I’m 78 now and I’m just learning about my autoimmune disorder. Having said that my daughter is a doctor and she too has had a hard time when going to doctors. I now have my doctor daughter advocate for me and now at my age I’m finally am learning about my issues. God bless you. I will pray for you and your family. ❤
I do not have the same diagnosis as you but I have been I’ll for 30 years. I have Complex Regional Pain Syndrome (CRPS). , Fibromyalgia, CFS/ME, was just diagnosed with Congestive Heart Failureand my husband was recently diagnosed with Mild Cognitive Impairment. He’s been my caregiver and I’m so scared because they just can’t give us much direction with his diagnosis. I hav had cognitive problems since I got sick 30 years ago and was completely dismissed so I noticed his issues after going through it myself. I’m scared about how we will handle things and watching your videos have helped so much. We have no idea how he will progress or if he will and I keep getting new diagnosis myself. I will send my email and maybe we could exchange info and talk? It’s totally up to you but I have suggestions after being ill for so long and I’m sure you would have them for me. If I don’t hear from you it’s ok. I will send my email and phone number through Messenger on FB. Anyway, I wish you all the best.
I am a retired nurse, and I know so many "professionals" don't listen because they have the "knowledge" BUT listen to your body, make them listen! Be your advocate. Bless you, and may the Lord keep you strong. Fight for yourself!
I think you speak for so many when you say, "You learned to live with it, because you have to go on." And good for you for pursuing the help you so badly needed. Wow, you obviously were ignored or dismissed for so long. That's awful. You are strong and beautiful and amazing! Thank you for sharing from your heart. I pray for you and Jason and send you love and hugs. 🙏💖🙏
My daughter (38) has auto immune disorders and it took awhile to get diagnosed, not nearly as long as some though because she was so persistent. She is taking a lot of meds to help symptoms. It’s been a long 3+ years, but she’s feeling better. God bless you during your struggle.
Omgosh I just talked about IGG to my chiropractor recently! Since getting _vid in 2020 I get sick all the time. I started crying when you said if just one person watching etc. I'm one person. Thanks for opening up to us about your health struggles. I feel validated and will address my issues with my doctor. Thank you Leslie. Healing prayers for us. ✨💕
Oh bless you-I relate! I am an RN, was caring for my stroke effected husband until he passed in 2021. I was diagnosed with Scleroderma, Pancreatic NETS, IBD, Uncontrollable Hypertension. I had so many weird sx, and it was challenging sometimes to also be a caregiver when not feeling well myself! The Lord got us through, and you are right, Jesus will continue to hold you in his care. My husband no longer suffers, and I have been given a gift of healing from the Lord and wisdom how to make changes in diet to continue the healing. Keep on being faithful, you are a light and an example of sharing in Christ's sufferings.
❤Leslie - I actually have heard of IVIG from another channel I watch. The person who began IVIG had a simply amazing recovery, and I hope you will too!! You truly are a ray of sunshine, and no one would have suspected you weren’t well. I will continue to look for your channel and to send you all the positive energy I can!!! Feel better and be well! ❤
Leslie, I understand! When people say, well you don’t look sick… I could SCREAM! I too have been ill my entire life. My biggest hugs and prayers coming your way! Take care of YOU! We love you! 💖
I too have CVID Common Variable Immune Deficiency. The struggle is real everyday. “Jesus is my strength and song “ Exodus 15:2 He has truly helped me everyday. I was finally diagnosed back in September 2019. I give myself subq infusions at home once a week. It is literally a blessing and I’ll never take it for granted. I’m still sick though with sinus and ear infections ~ had surgery this last Oct and I’m still sick and the Surgeon and his nurse are dismissing me and not willing to look more into it, or help me to get better. So I truly needed to hear and see this video today. I’m going to call them back today again and push back. They never returned my call sense last week, and I had just resigned 😑 to just dealing with it and just wait for the healing that they said could take 3/6/9 mos to a year. Thank you so much for sharing your struggle, sickness, and your heart of all that you have been going through. I’m sorry that you have had so much to deal with~ the IVIG therapy I hope will give you much healing, strength and hope in a better everyday life. It certainly did for me. Just a bump in my journey that I need to push through and get this past surgery resolved. I wish you health and happiness. You are very strong, and a very caring and kind person. God bless.
Retired nurse here too- feel so bad for you!!! You are dealing with so much with Jason’s diagnosis and always seem so upbeat. It’s ok to be real and I’m sure you will help someone in doing this video!!!!! I hope you get the help you need and feel better for the first time in your life. I have some chronic issues and you just learn to put up with them but it would be wonderful to be rid of them!
Leslie you always look so put together one would never know your struggles. I am a retired nurse who battles with depression and totally understand the outward appearance can always be deceiving. Being dismissed by another healthcare person is maddening. Bless you for your determination to persevere through all this. I have such respect for you. Will keep you in my prayers. ❤
Aaaaw I know that feeling hon! I've been going through medical appointments for so long and yes you are in charge of your own health! 👍 It took me 7-10 yrs to get my Fibro and Sjogren's diagnosis. I went through hearing EVERYONE tell me there's nothing wrong with you!! You can't possibly be in that much pain! Nothing is showing on your labs! Please put yourselves first love and I will be here rooting you on. I just got diagnosed with Lewy Body and your videos are key to my learning. See ya on Instagram 😊
I don’t understand Instagram. I went over to follow you and there are all sorts of other things and people on what I thought was your page. I did sign up to follow you so I guess I’ll just see what happens.
Tears in my eyes not only for you but also for me. I am currently being dismissed. I thought by changing from a PA to physician, I’d be listened to…NO! Throw me pills with horrid side effects. I’m going to seek out a naturopath physician. I’m also an RN but patient first. Not being believed is the ultimate for me. Prayers for US, Leslie. I’m so glad you were listened to…I’ll wait my turn! 😢
If you've ever heard of functional medicine, that is a route to look into.( I can't find a naturopath around me) I'm currently doing that and they take a deep dive into your health and use nutrition among other things to treat the root. Not to mention they take lots of time with you, and your not rushed in and out and dismissed.
I needed to hear this so badly! As a momma of a cancer survivor I have always told any who would listen to advocate, advocate, advocate for those you love with people in the medical field. It is very easy to feel like you are not being heard. But for myself I never even try with my own health. It has been on my mind a lot lately and your sweet video was just another witness of that!
This is going to help alot of people. Our family will appreciate your transparency. You are right On track doing what you love as you can and are able. It’s your “ministry” to us and you are not done!
This whole video my heart was embracing you, Leslie. I am thanking the Heavenly Father that you have found out why you’ve been suffering all your life and praying that you will be able to receive the medical help you need. You have indeed been a master at hiding your health issues behind the joy and passion you bring to us your TH-cam family. I always look forward to your Sunday videos and will be here every time the notification bell rings!
Oh, Lesley. You are such a special person. I’m sorry you’re dealing with all this. I’m keeping you and your family in my prayers! Hang in there, friend!
THANK YOU! I am that one person. I am on the liver transplant list at 58 years old. I was dismissed for years, and even my transplant team dismissed me in this past year. Every high fever, all the terrible pain in my joints, just the psychological waiting. My final visit in Boston they had the nerve to say well you look good. (my scores were bad as in still qualifying for a transplant) but I look good? I am in no way good. They actually told me that it would be years to wait due to the day drinking during Covid- I had been essentially 'bumped'. My husband and I went home, sold our house, and relocated to FL. This transplant center wants for me to get a liver and live. This institution treats me like a sick, but hopeful, person. Your video is 100% necessary for the friends and family who are well and cannot imagine what we chronically ill people are experiencing. I believe that my life has purpose and that I am in God's hands. I wish you more answers, more treatments, more days pain free. Thank you, again.
You are such a trooper! Praying for you and Jason. I currently take responsibility for my 88 year old mom, my 72 year old husband and my sister and I. I have had to advocate for all of us and I so appreciate your words today. God bless you! And YES, I’ll be right here when you post, regardless of when your last one was!
I’ve been dismissed by several doctors for the past year 😢 still have no answers for the pain and issues I’m having! I truly feel like they just don’t care. I’m sorry you’re going through this too! 🙏 for all of us
I'm a retired nurse and totally understand how you feel about being ignored or dismissed by doctors. I knew something wasn't right with my health and went to several doctors with no diagnosis. Finally found a doctor who listened and cared. Finally dx with RA and Fibromyalgia. Treatment has helped and I learning what helps and what doesn't. I'm so glad you persisted and got answers. Prayers for you and family. Take care and do what is best for you. We will be here waiting. ❤🙏
My husband was I’ll, diagnosed with MS 3 months after we were married. I was his main caregiver for 22 years. I wish I had known this when it all started, you have to have a consistent relief person. You have to remove yourself and just concentrate on self care. Please do this for yourself. I will pray for you.
I am so thankful you posted this! Sooo many people are at the health professionals’ mercy. I pray you will get a handle on your condition and live without sickness in your daily life. Thank you! ❤
As a RN also newly retired, I have seen this happen so often! Unfortunately the medical community is not like it used to be! I also have issues and I don’t even share with my family as they don’t understand! I’ll pray for you! Keep the faith!
Wow, I am so sorry you have had to deal with your immuno deficiency for a lifetime. I can't imagine how exhausting that is. It took courage and energy to make this video for us, and I thank you. I really hope something curative or at least helpful will come of all the testing you've endured.
I also live with a chronic disease, large granular lymphocytic leukemia. I understand when you say you feel bad everyday and just keep the smile on your face! Or, but you look good…it makes me want to cry when I hear that. I for one will be with you whenever you are here, I’ve learned a lot from you through the years!❤
I am a TRUE ZEBRA!!! It took me about 25 years to get a diagnosis. I have Primary Immunodeficiency. I’m a Nurse. Very sick frequently. I am here for YOU!!!
Leslie, our daughter has Dysautonomia. It took 2 years for her to get a diagnosis. So many doctors, and the majority of them dismissed her. It’s a common practice amongst doctors and women patients. Praying for you to get IVIG quickly. It has helped her tremendously. Thank you for sharing your experience. No one knows how bad it can be until there’s an illness that’s out of the ordinary. Sending lots of love and hugs your way sweetie.
I’m so sorry you are going through this. It amazes me that you made it through Covid, multiple times no less, without dying, with having such a poor immune defense. I’m so glad someone finally listened to you and I’ll be praying that there is something that can be done to help you. Even strong women need help. 💛
You are so inspirational. You brought tears to me and I feel I love you even tho I don’t know you. Thank you for sharing from your heart. I totally see you!❤️
Leslie, you’re an outstanding human being! I’m a nurse, too & I’m amazed that your immunodeficiency wasn’t discovered sooner. I hope you feel a sense of relief knowing what’s wrong & knowing you can get care for it. I wish you all the best. 💖
I can so relate to your story. I've had several years of misdiagnosis and no diagnosis. I finally got a diagnosis after years of suffering and pain. I got to the point where I couldn't even walk. Finally, someone convinced me to see the right specialist because I gave up trying to figure out what was wrong with me, and it was determined that I have MS. It was a relief to get a diagnosis and get on the proper treatment. Finally the pain is under control, I was able to walk again, and I'm doing very well. Diagnosis is the first step in controlling your health.
My daughter has a diagnosis that is unusual. Watching her for almost 2 years go through multiple doctors and tests that showed nothing… doctors finally started giving her pain meds and antidepressants. I was so over it. I am a nurse too. We took out an equity loan on our house and I got her an appointment at Mayo Clinic diagnostic services in Arizona. Within 48 hours she was diagnosed. If I had giving in to all those doctors- she would have given up. I am thankful to God that we were able to get her to a place that has doctors that listen.
I can imagine how hard it was for you to film this video, know that we are always here for you. So many prayers being sent your way, for both you and Jason…
You have to be your own healthcare advocate! You know your body & mind like no one else. We love you because you are “real”. We all have stuff we go through & it’s nice to know we aren’t alone but we also love the escape we get through you. Sending big hugs from Alabama to you Leslie & Jason. ❤
I am a retired RN and thank you for sharing this! EVERYONE needs to be encouraged to find those who will LISTEN! I always told my patients, “the squeaky wheel gets the grease.” My most rewarding time as a nurse was doing in home hospice. I received excellent and ongoing education on symptom control, especially for pain and agitation. So doctors would listen to me when I would call for help for my patients. Thank you again! ❤️🙏❤️And I am blessed to have a doctor the past 20+ years who listens, even if she doesn’t agree with my diagnoses for myself, 🤣, and she understands the pain I deal with osteoarthritis, including two surgeries, and how emotional pain can settle in our bodies and actually lower our pain threshold. Caring for Jason is similar to my dealing with my adult son’s death as it increases our vulnerability. God bless you both! And I am adding you to my prayer list.🙏🙏🙏
Thank you for making this video! The invisible diseases are hard to battle. I was diagnosed with SLE at 19. At the age of 56, I pushed back and stood my ground. I was diagnosed with Polymyositis in Feb. 2020. Within 12 months, I had over 12 inches of bowel removed due to acute diverticulitis, basal cell carcinoma, and breast cancer. Each day is a struggle, but I’m grateful to have life each day!
Hello Leslie It’s been 20 years that I was diagnosed with fibromyalgia. Other doctors say it arthritis, others say it’s RA and Fibromyalgia together and still other doctors say fibromyalgia is not real but that doctors say that when they don’t know what I really have. . Either way pain is 24 hours but the worse pain is during the night and many people don’t understand this pain because they see me moving constantly. I have to go on with my life! I have my days of tears that no one sees. I understand you perfectly my precious friend. I am so glad that they know what you have now and praying you get the treatments you need. You are a beautiful strong woman and the Lord will continue to honor your faith in him and will help you continue doing what needs to be done. I pray for you and your husband to get through this life one day at a time. God is with you, in you and around you. Enjoy the good days. Keep up that beautiful smile. If you need to share with us and cry. Go ahead. Tears are free and also healing. We are here with you always whether you take a break or not. It’s going to be alright because God is on your side. He fights our battles. ❤
Omg. I can't believe I saw this right now. My daughter is going through the same thing but no answers yet. I shared your video with her. Thank you so much for putting this video out. I enjoy all your videos and you are such a a special soul. I am glad you got answers and I hope you feel better. We love you! ❤️
Thanks for the good advice, Lesly. I’ve been in the “I’ll just live with the pain boat” as Drs. haven’t diagnosed me. One even told me I needed a psychiatrist! I hope your diagnosis brings you better health! Take time off and don’t worry about the algorithm. ❤We’ll be here waiting for you to return ❤️.
Isn’t it awful we women are always put in a box of needing a psych doc because we have health issues or any other problems needing a man to intervene! A human male! My help comes from the Lord He doesn’t box us in!!
Sending you prayers and strength as you navigate this diagnosis…. Wishing you all the best and yes I will still be watching your content no matter how much or few! 🙏❤️
Leslie, my prayers are with you. I took care of my husband and mother for many years and one of my biggest fears was that I would become sick and unable to care for them. They passed within three months of each other and that pressure is gone, but I’m exhausted. My prayer for you is that your health be totally renewed and you have the strength to live your life well.
Hello from Montana! I love that you and Jason do these videos. I hope it helps to know that your family is a blessing to many. And it helps you feel like you are community. So many, many, many, many new normals for you and your family. Take it one second, one minute,one hour, one day at a time🐻 The two of your love story is absolutely beautiful and has touched a deep part of my heart 🐨
Just wanted you to know I will certainly pray for you. Also, for someone who is chronically I’ll, you look great! And I’m not saying that in the vein of - “ how can you be sick? You look to good! “ I’m saying it, “ wow, in spite of being so ill, you look great!” Your hair is so, so pretty, I would kill for that beautiful head of thick, non frizzy, curled hair! Anyway, I’m just so sorry you are and have gone through so much. Hoping you can finally get it resolved. Thankfully, the great Healer is your good friend. He brought me through a debilitating autoimmune disease, He will do it for you!
Just wanted to thank you for sharing your experiences, caring advice, and beautiful spirit with us. Whether we need this gentle push now or sometime in the future, it’s a good reminder to have courage to speak up even to medical professionals. Watching this video made me think of the quote “Just because someone carries it well, doesn’t mean it isn’t heavy” Jesus in you is so evident, thanks for pointing to Him. I appreciate your content- real joy even amidst hard circumstances is rare. Praying for you and your husband!
Dang! This sounds like my sister. She gets sick a lot! Thank you so much for making this video. I’m going to send this to her. Thank you, Leslie. Us women are so good at just carrying on ❤️
An RN here also. So glad you finally got a diagnosis and a treatment plan! I became immunocompromised following a flu shot. Had GBS. It took years to get fully recovered. I have autoimmune issues now. But, having had that experience and immune issues, am now able to forgo all shots in the future. It took a bit, but finding a doctor that listened made all the difference. The stress of caring for someone with Dementia is an immune buster in and of itself. You are blessed to have a great support network. Ptaying for you!
What a blessing! With being a caregiver for 31 yrs our special needs son. He’s has 27 surgeries and so many time I had to step up to be his advocate. But now I had started catching everything that comes along. About 5 years back they said you probably have fibromyalgia but just three weeks ago I had strep and I felt good for two days and then I tested positive for Covid. It just keeps coming back to back anymore. you’re right you still have to be a caregiver but you’re right. Also with God there by your side, you can make it through anything.❤ keep on for Jesus and your hubby! ❤
Prayers for you Leslie! You have a lot on your plate and yet you’re still always so positive and looking out for others. Please take care of yourself too tho! We’ll still be here ready to watch! And you’ve got loads of prayer warriors out here ❤
If nothing else, Leslie, by sharing your story, by educating the public and your friends about the symptoms and severity of immunodeficiency- I HOPE the people who hear you will take time and care to be EXTRA vigilant around anyone who is immune compromised. All during the COVID epidemic I felt so frustrated that some folks felt they could ignore the needs of others and their own responsibility to help to keep others safe. You are very brave to share your story. Thank you.
My husband has been getting IVIG therapy for 5 years for CIPD. He too was ignored and then blamed for “drug seeking” for pain no one wanted to investigate. But God has lead us to new practitioners to give us answers. God bless you as you walk through these trials may you find springs along the way to refresh you!
My daughter who is 28 was just diagnosed with Specific Autoimmune Disorder and will do infusions once a week probably for the rest of her life. She is 28 and your story is just like hers. I've talked about you and she wants to follow you now. And your journey. She is also Christian but is struggling a lot.
I hear you, Leslie. Currently still advocating for myself and my husband. Spent years advocating for my parents. I was a shy, quiet child. However, events in my life from 22 years of age until now (67) have made me learn how to advocate for others and myself. It makes us stronger. I could relate to everything you said today deep in my heart. You and Jason are a blessing to all of us. Thank you for sharing. 🙏
Thank you for speaking up and out about this very real topic of being dismissed. I am so glad you finally have a diagnosis so you can have a plan moving forward. I had a gastroenterologist put his hand on my knee and say "you know, sometimes when we're afraid to be sick, we make ourselves sick." implying it was all in my head, just because after months of testing, they couldn't figure out what was wrong. The only reason they kept searching was because I said "I understand you don't care if I die, but my family does!" (people who saw me literally thought I was dying of cancer because I had lost so much weight and was so week I couldn't walk). Turns out I have gastroparesis. It was worse than they've ever seen. My stomach was totally paralyzed, not just slow functioning. And this dude had told me it was in my head!!! So, thank you, form the bottom of my heart, for telling people to keep pushing. It truly could save a life.
My name's Kim. I just wanted to let you know that what you've written here has helped me, just like Leslie's video has helped. You too are an inspiration for me to keep seeking answers to my personal health issues!! So thank you🥰💜
I went my while life feeling sick. I got dismissed and actually called a hypochondriac and dramatic and overly sensitive. Every dr told me I had ringworm and gave me steroid creams which took away the ring patches but I still felt so bloated, had diarrhea, brain fog, social anxiety, major depression and so much more. Anyway years later a woman from my church told me she thought I have celiac disease and encouraged me to get tested and sure enough I texted positive for celiac disease! I felt amazing within 2 weeks of only eating whole foods and gluten free. It all makes sense and I have gained my confidence back. I always felt suppressed by family members and Dr's. It was a horrible and lonely feeling. I STRUGGLED allgrowing up. I am so thankful for that woman who told me about celiac disease. What a true gift she gave me.❤
You are on my prayer list along with Jason. There are a lot of people that are on my prayer list but GOD IS GOOD! Retired nurse here also and it’s always good to advocate for yourself and not rely totally on the medical profession. It will sometimes take years to get to the right doctor who will take into account the entire body! I’m so lucky that I have one who listens well and also lets me research my natural remedies. God bless you and your family.
Preach Sister!!! I have MS. It is invisible to everyone else and I make it so. If people had to live in my body for a day then maybe they would understand all the things. Praying you get the help and treatments you need soon and it makes you feel better!!! 🙏
Oh Leslie, I'm sitting here watching this with tears streaming. I see so much of myself in you. I have been very sickly all my life. 12 years ago I was diagnosed with a rare auto immune disorder Dermatomyositis. I have taken IVIG every two weeks for all these years. I just want you to know that I SEE you and the wonderful person and caregiver you are. As a caregiver myself you often feel like you are "circling the drain." This is a very odd question, but were either of your parents in Vietnam? They think a lot of my health issues stem from my Dad being there when they sprayed Agent Orange.
my husband came home with boils on his chest and back from Agent Orange. He had a work ethic and worked long hours at UPS 40 years. He died from Agent orange cancers , 8 to be exact. He was a marine till the end. We found out that Agent orange goes to the 4th generation with these awful conditions and one of my daughters has horrible boils now. They poisoned many many of our brave men and women who served in wars and now we our paying the price..I know where my brave Jim is and he has no more worries He is with the Savior. The devil did not win..I am praying for your dad and you…..
Hi Leslie! I love decorating shows but interestingly enough I've been drawn to your vlogs about the journey you and Jason are taking through this world of dementia. I'm a recreation therapist who works in senior care and I feel a burden and passion on my heart to understand as much as I can about dementia and to help others understand. I want to be able to relate to the people in my care the best way I possibly can. I've been so inspired by your journey but none quite so much as to see this video of you here. Thank you for being so real with us. I believe in Jesus and he is my rock and I will be praying for you and Jason, particularly as you are navigating yourself through this new diagnosis.
I’m so sorry you have this. All of us that have autoimmune diseases understand. Takes 9-10 years for diagnosis. And each time you see the doctor you have another autoimmune disease. I’m sorry to say I don’t think you will notice people understanding you are truly sick even though you don’t look it. In 15 years I don’t notice compassion. And people don’t want to hear it. I do know the struggles and I’ve learned to care for myself. But it makes me lack compassion for those who showed me none. Give yourself time to cry and mourn the person you were and the things you used to do. Wish you and Jason the best
I take my hat off to you! I was a caregiver for my mother who had dementia and Alzheimer’s until she went home to be with Jesus. To be ill and a caregiver is unbelievable. You pushed through and found answers and good for you sweet lady. I pray God’s healing power over you. That He gives you strength and wisdom to continue to do what He has for you to do. Heal her Lord…in Jesus name.
When You know something isn't right you have to become your own advocate. I was in urgent care the ER Doctor told me it was probably skeletal I disagreed and after 6 hours he came back to me to tell me I had cancer all through my abdomen!! I was diagnosed later with Lymphoma so your message is very relatable and important! Thank you for sharing! You are not alone!❤
I totally understand being dismissed by healthcare professionals. I was constantly dismissed for 11 weeks after I gave birth to our son in August. I had to advocate for myself for them to take me seriously. Come to find out I had retained placenta! Had I waited like they told me to do, I could have gotten severally sick. I completely agree that when you know something isn’t right, you fight and make sure you aren’t dismissed and they take you seriously. Because you know your body and you know when something isn’t right. Praying for you and your treatments!
You have such strength of character and you’re an inspiration. I’m sure it was such a relief to finally have some answers to your health concerns… that is half the battle! May you have good health, love and joy in the days to come.
What an amazing video. My husband was terminally ill and I always felt he was ignored during doctor visits as the doctor would talk to me as if he wasn't in the room . I felt my husband was disrespected at his most vulnerable time. Kudos to you for being a champion of your own health
I have been taking IVIG I fusionsfor 15 years...every 5 weeks for 2 consecutive days...about 7 hrs. Per day...keeps me going for a chronic illness and allows me to lead a semi-normal life. To look at me, you would never know that i have a bad debilitating disease. Hang in there! We just play the hand we are dealt. In my prayers! Ronda from Alabama
Dear Leslie- my husband has Lewy Body Dementia too. I love watching the videos of you two together. His mother had LBD too, so we know what our future holds. I have chronic immune problems and constant pain, so I understand how you just have to carry on. You just power through because you have no other choice. For the last few years I’ve been having memory problems and finally last year I got a new doctor that actually listened to me. After much testing and an MRI I got diagnosed with Mild Cognitive Impairment. No one wants to label me yet with young onset Alzheimer’s, so I go along doing the best I can. My husband and I are quite the pair now! I believe this is your time to slow down and take care of yourself. Learn to say no and learn that things don’t have to be perfect. Take time to enjoy the little things in life and cherish family more than ever. I feel strongly that you will begin to feel better and it will be life changing. We all support you and we’ll be here for you if and when you make another video. ❤
There is something tragically liberating to finally have answers. :( I appreciate the tears (my body reacts negatively to my tears... no break for the empathetic!) so I get the reality of the exhaustion, dry eyes, and maybe headache, on top of the "vulnerability paranoia" putting yourself out like that. You articulate this journey so beautifully.
I feel like you are speaking my story! I rarely feel good. I’ve been to the doctor so many times. The rheumatologist said fibromyalgia. Yes, I hurt all over most days and have major fatigue, but that never explained why I’m sick all the time. I stopped trying to get to the bottom of things. I’ve definitely been dismissed many times. Thank you for sharing this, Leslie! I hope I can get the courage to fight back! Jesus is my Savior too! ❤
OMG Leslie, I can not believe your dismissal by your own medical community. I thought I was crazy to present symptoms and be told to drink more water. I ended up so sick that I called my husband from work to get me medical help. I could barely walk or anything. By pure luck I ended up at clinic with a doctor who helped save my life. I had a perforated duodenal ulcer that damaged my colon and lead to sepsis. A very long road to recovery. You being a nurse I'm sure you know what I'm talking about. You are helping others to ask more questions. Thank you! Bless be with you and Jason. 🙏💖
Very educational!! I am 71 yrs old and I do not feel heard by my drs anymore. I have several autoimmune diseases so I understand where you are coming from. Jesus is all that gets me through each day. My prayers are for you and Jason. God bless you!! ♥️🙏🏻
We have your back, girl. I thank you for all that you continue to do for this community. I am a 3 yr long Covid sufferer, neurological impact, as well as experiencing compassion fatigue from care giving. We have to take care of ourselves. We’re going to be right here for you. Blessings to you and Jason
Girl! Look at all the love after you just posted. I have soooo much admiration for you. I can’t even imagine what you’re all capable of if you felt good on a regular basis and didn’t have to be a caretaker full time and and a mom and grandma. OMG. This is a beautiful vlog. Inspiring at the very least. God be with you and your family and your journey.
Another retired RN here! My husband thinks that nurses have some kind of "secret clan" that we don't even have to talk, we just KNOW. I understand your frustration, feeling dismissed, labeled etc. It took a long time but after years of strange symptoms, aches and pains etc was diagnosed with syringomyelia in 2006, also congenital. Drs and Clinicians, please LISTEN to your patients!! Praying you get relief soon, I know you're relieved to finally have a diagnosis.
I am a retired teacher and I have learned to push back because if I didn’t people would walk all over me. Being a teacher I had to be listened to and heard.
Im a retired hospital pharmacy tech. I've actually mixed the IVIG. These infusions are not fun. But you will begin to feel better soon. And I will be praying for you every time I sit down to do my devotions. You do whatever you need to do for you and your family. That said, I just today spoke to a Dr. who actually HEARD ME!!! I've been struggling with an illness and was dismissed. Oh you have to expect these things because your 65 yrs old now. I finally just asked God to specifically send me to a Dr. who would hear me. And today he did. So I hear you and I feel you. Hang in there sweetie. Know that you guys are added to my prayer life. ❤❤❤
"When you're ill yourself and you're the caregiver of someone who is ill"...my story. Lifetime illness and caretaker of my adult daughter. Totally understand medical gaslighting and the trauma of not being heard. Sending you hugs and prayers that the ivig helps you feel so much better! xoxo
I’m a retired nurse so I totally understand all of this… and so glad that you were finally diagnosed after all these years.. agree we have to be our own advocate .. I just want to give you a hug.. you are such a beautiful person inside and out and you deserve to be understood !!
God less you and will continue to pray for you and Jason ..
Please continue your channel and I so enjoy your vlogs. Sending love to you !
I am a caretaker of my adult daughter and am looking for support and people to connect with. Thanks for this channel . Every bit helps.
Thank you so much for sharing, Leslie. I’ve been sick my entire life (I’m 55) and I just don’t even talk about it with doctors anymore because I never get any answers or help and I feel like I’m being perceived as a hypochondriac. I always get sick - as a kid I got severe tonsillitis constantly up through teenage years, missed so much school. Used to have continual UTIs, yeast infections, swollen lymph nodes. If anyone around me has a cold or flu I’m guaranteed to get it but it always hits me much harder and much longer than it does them. I hurt all over every day. You’ve made me think that maybe I should go to see an immunologist! I’ll be praying for you, my sister-in-Christ! ❤
@@lisa.1771 PLEASE consider mykotherapy medicinal mushrooms to strengthen your immune system naturally. There's great information all over the internet and the mushrooms are to be found for free in your local forest. 👍👍
Sending prayers your way Leslie.
Sending you love hugs prayers and kindness with blessings ❤❤❤
Wish I could give you a big hug. Retired nurse here. This speaks volumes. Praying the immunotherapy goes well. From a childhood Christian song,” You are precious in His sight” this is a ministry. 🙏🏻💗
It took 40 years before I was taken seriously and diagnose with FM and ME/ CFS. I also care for my husband with ALZ.
I’m so glad you shared this. Yes, we are in the Lord’s care and His plans are good. I’m praying for you🙏🏻💕
You are another amazing lady. God bless.
Leslie, I had no idea that you were dealing with sickness. Thank you for sharing your story and being vulnerable with your viewers. I'll be praying for you.
P
Standing in prayer
You are me accept you handle it better. I sat watch with tears. I have been on IVIG for about 14 years. I feel your frustration. In addition I had Covid Pneumonia in December and now have been diagnosed with long Covid. Talk about making things worse.
I am the parent of two critically ill/disabled children. One has left us and one is in her late twenties. There is absolutely no question that this level of intense caregiving has negatively impacted my health. Despite that, there is no question of stopping. Your voice reaches so many, thank you for raising this issue and having this discussion. 💜
So sorry!😞 I'm a special needs mom too and it can be a lot at times, but never gonna stop for my precious son. He's a blessing! God gets us through. 🙏
Hugs and prayers 🙏 ❤️
Thank you for sharing your journey with us. I don’t feel so alone. I Have rheumatoid vasculitis & care for my husband/w dementia. Had to advocate for a specialist for auto immune issue also. Prayers, hugs & healing to you You’re an amazingly strong & beautiful person God bless you 🥰🙏🙏🙏
💕💕💕
I’m also a special needs Mom. My son recently passed and I am blessed I had the time to be with him. Much love to you.
Nurse here too. Medical gaslighting is such a horrible, widespread problem. I’m glad you’ve gotten some answers and hope you start feeling better.
Can’t believe how many female Drs/GPs/specialist are dismissive with women!! Like myself. Whats up with THAT?? I’ve pushed back far too many times and at 63 I’m frankly getting tired of it. I’m like Leslie..I push thru every single, solitary day and do quite well considering how much pain I’m in or struggling. Thanks for identifying medical gaslighting..what a perfect analogy!
I want to say thank you to you and all nurses. My medical experience is that nurses tend to know more than doctors do generally speaking. I understand there are some technical things about more complicated medical issues that doctors do know more about, however. Nurses see and hear everything everyday, over time you start learning things on your own. Nurses are the ones that take all the information and listen to the patient say what is going on, I presume this also has a lot to do with them being more competent than many doctors! 😆
Oh Leslie! I was a hospital administrator for several years and my boss who was an RN had her breast cancer dismissed as nothing by 2 drs before she saw the third who confirmed what she felt. Such a great video to advocate for people to be their own medical champion. It's a MUST. PS I know how hard it is to care for someone when you feel bad as I am caring for a friend with dementia and have been sick myself with covid. Hang in there, you are right Jesus loves us! xoxo
It doesn’t always have to be “enjoyable” content! This was very informative and I’m sure there will be a lot of people that will be grateful for you being so honest and transparent! Thank you!
Finally after all of these years, you have a diagnosis! What a weight off of your chest-we love Leslie no matter how many breaks you take, you are not alone! Take care of yourself and congrats on taking a chance and making that appt. with a new P.A. This is a major breakthrough for you! You and Jason are in my prayers.
As a fellow RN, I hear you loud and clear. So glad that you were able to use your venue, to spread the word. Proud of you for finally putting yourself, maybe not first, but higher on the ladder. Continue to be your beautiful self... 🙏
Hi Leslie, I’m also a retired nurse and it’s so frustrating to get dismissed. When I was working, the pressure was to see as many patients as possible so the providers just didn’t have the time to spend with our patients. After years of this, I just couldn’t take it anymore and just retired. Thank you for highlighting this very real issue and encouraging us to be our on advocates! God bless you and Jason and I’ll be praying for good success with your treatment. ❤️Becky
I have an autoimmune disorder and take IVIG every four weeks!
Jesus. Yes! ♥️ I believe and I’m believing for you.
I just went to my doctor and told her something is not right. I keep getting sick and her response was “ do you know how many people come in saying that now days ?!!! 😢…Thank you so much for making this video, such good information. God bless you🙏
This is one of the best videos you've ever made. It's always about stuff or Jason and hearing about you is also what we're interested in too. To hear you as a great advocate to encourage others to push and advocate for themselves. We cannot care for others if we don't care for ourselves first. Make what videos you can, when you can. Hugs to YOU!!!!!
Oh Leslie, you made this for me. Your story is incredibly familiar. I am mysteriously chronically ill (currently been sick for a month with 3 different illnesses). …I started to share more of my story with you just now and deleted it all.
I realized I simply want to say what I wish I heard more often: I hear what you are (and are not) saying. I see how strong you are (even the beautiful strength in your weakness). I understand that place of existence between uncompromising faith and just trying to survive yet another round of the really, really hard. And I honor you, my sister in Christ, for your courage in showing His light in darkness. Thank you, to infinity, for sharing. (I’m going to go be my nerdy self and research your diagnosis. Who knows, maybe that will lead to answers of my own! ❤
I hear you, Leslie. I, too, have a chronic illness (Sjogrens Syndrome), and I, too, am the caregiver for my husband who has Lewy Body Dementia. There are days when I have a flare-up and feel like I have the flu, but I have to keep going for him. I've also had to change doctors a few times until I found one that would really listen. You're not alone, and I wish I could give you a hug. ♥️
Hi April. Can I ask you how you got diagnosed with Sjogrens syndrome? I was diagnosed with fibromyalgia 10 years ago but feel like there is more going on then that. I tried to get an appointment with Ruemetologist but have to see my GP first then he has to refer me. I need to have more tests or something to help me find out what is going on. Bless you in your journey 🙏
@@ruthmiller4513 It was a series of tests that started with a blood test that measures inflammation markers, then a biopsy of a saliva gland in my lower lip, and an eye dryness test called a Schirmer's test. My blood test was enough for the rheumatologist I was seeing at the time, so she diagnosed me without the other tests. The next rheumatologist I started seeing wanted it confirmed with the other two tests, so I went through those just to satisfy her protocol. Around the same time, I was diagnosed with Celiac disease--another autoimmune disorders. It was hard to tell which one was causing which symptoms for a while. I'm better now and inflammation markers have been normal for several years, but I tire easily and have lost a lot of strength. I hope you find some answers and solutions for what you are experiencing.
@@apriljohnson4793 thank you so much. I appreciate you letting me know. Hopefully I will get some answers soon because this has been such a struggle for so many years and as I get older it just gets worse. I'm happy to hear that your doing better. God Bless
Hugs your way
Prayers
I also have Sjogrens and it took good through 4 other rheumatologists before I found one that diagnosed me. He did labs - ANA, immunoglobulins,
RF factor (positive in conditioner than RA), etc. But my Dr said it’s more than just labs. Keep pushing till you find a dr that will listen to you. Like Lesley said!
As a lifelong migraine sufferer (until 2 years ago) and the last 20 years of Fibromyalgia I can really relate. Thank God I don’t have to be a caregiver (so far) as I find it challenging just dealing with my own issues. Decorating videos are so much fun and takes our minds off other things but this is real life and we all need to know we’re not alone in our struggles. I often say to myself, “suck it up Buttercup, life isn’t supposed to be easy or pain free” but I will never stop looking for answers! You inspire so many people I just want to thank you and send His blessings your way. I’ll support you no matter how many videos you post.
Can I ask how you got rid of your migraines? I suffered too for MANY years. 14 to 16 a month. I literally have lesions / scarring on my brain from them. I was on so many of those instant meds. but they only ever worked just 1 time each for me. Then finally seizure meds that helped a bit. But the biggest cure for me (And I had zero idea) was my divorce. It's been almost ten years now and I went from that suffering to maybe 4 over the past entire 10 years put together!!
My migraines were have to be in a black room. Zero sounds. Like the neighbor taking the garbage our 2 blocks away would kill me!! I'm so thankful for my divorce. They were literally life altering. Alot of people just don't get that.
Im thankful you dont get them anymore! Congratulations!!!
@@COEXIST-ny4db I started getting them as early as I can remember like 3 years old. I had high hopes they would go away after menopause but they didn’t. I had every kind of test under the sun and tried every kind of drug. Imitrex injections finally ended the trips to ER. About 2 or 3 years ago I started taking Aimovig injections once a month. Finally, something that actually worked! My life was controlled by my migraines. I prayed for help in all those years and they were finally answered. Praise God!
I have fibromyalgia too it’s awful so much pain every day
@coexist2020 I can’t say that I have any experience with this but I recently heard a friend of mine saying that he used to suffer with terrible migraines until he had his blood thinned. He said that took care of it and he never had any more. I just thought you might like to look into that. Wishing you the best!!
Did your migraines go away two years ago. What was the cure?
Leslie I remember when this video came out, I too as a child up to present at 62 always sick. I use to receive gamma globulin until I was in my late 20’s , which helped! I started with a new primary and it was always well your under stress ,and I was most definitely because I was working and caring for sick parents 4 children and then my husband received a diagnosis that was terminal. I would end up in tears because I knew in my gut this is not just stress . Well I thought of what you said on here and asked God for the courage to have my hematologist do blood work AGAIN! I received a phone call stating I have low IgG subclass 1 , and low IgG subclass 3. Same questions were asked do you get sick a lot ? Yes! So I’m a candidate for immune globulin infusions. Thank you for your encouragement to advocate for myself. May God Bless you ! 🙏
OMG. This has been my life as well… I’m 78 now and I’m just learning about my autoimmune disorder. Having said that my daughter is a doctor and she too has had a hard time when going to doctors. I now have my doctor daughter advocate for me and now at my age I’m finally am learning about my issues. God bless you. I will pray for you and your family. ❤
I do not have the same diagnosis as you but I have been I’ll for 30 years. I have Complex Regional Pain Syndrome (CRPS). , Fibromyalgia, CFS/ME, was just diagnosed with Congestive Heart Failureand my husband was recently diagnosed with Mild Cognitive Impairment. He’s been my caregiver and I’m so scared because they just can’t give us much direction with his diagnosis. I hav had cognitive problems since I got sick 30 years ago and was completely dismissed so I noticed his issues after going through it myself. I’m scared about how we will handle things and watching your videos have helped so much. We have no idea how he will progress or if he will and I keep getting new diagnosis myself. I will send my email and maybe we could exchange info and talk? It’s totally up to you but I have suggestions after being ill for so long and I’m sure you would have them for me. If I don’t hear from you it’s ok. I will send my email and phone number through Messenger on FB. Anyway, I wish you all the best.
I am a retired nurse, and I know so many "professionals" don't listen because they have the "knowledge" BUT listen to your body, make them listen! Be your advocate. Bless you, and may the Lord keep you strong. Fight for yourself!
I think you speak for so many when you say, "You learned to live with it, because you have to go on." And good for you for pursuing the help you so badly needed. Wow, you obviously were ignored or dismissed for so long. That's awful. You are strong and beautiful and amazing! Thank you for sharing from your heart. I pray for you and Jason and send you love and hugs. 🙏💖🙏
My daughter (38) has auto immune disorders and it took awhile to get diagnosed, not nearly as long as some though because she was so persistent. She is taking a lot of meds to help symptoms. It’s been a long 3+ years, but she’s feeling better. God bless you during your struggle.
Omgosh I just talked about IGG to my chiropractor recently! Since getting _vid in 2020 I get sick all the time. I started crying when you said if just one person watching etc. I'm one person. Thanks for opening up to us about your health struggles. I feel validated and will address my issues with my doctor. Thank you Leslie. Healing prayers for us. ✨💕
Oh bless you-I relate! I am an RN, was caring for my stroke effected husband until he passed in 2021. I was diagnosed with Scleroderma, Pancreatic NETS, IBD, Uncontrollable Hypertension. I had so many weird sx, and it was challenging sometimes to also be a caregiver when not feeling well myself! The Lord got us through, and you are right, Jesus will continue to hold you in his care. My husband no longer suffers, and I have been given a gift of healing from the Lord and wisdom how to make changes in diet to continue the healing. Keep on being faithful, you are a light and an example of sharing in Christ's sufferings.
❤Leslie - I actually have heard of IVIG from another channel I watch. The person who began IVIG had a simply amazing recovery, and I hope you will too!! You truly are a ray of sunshine, and no one would have suspected you weren’t well. I will continue to look for your channel and to send you all the positive energy I can!!! Feel better and be well! ❤
Leslie, I understand! When people say, well you don’t look sick… I could SCREAM! I too have been ill my entire life. My biggest hugs and prayers coming your way! Take care of YOU! We love you! 💖
I know exactly what you mean and I never say anything to anyone about how sick I feel and every day I feel awful
So much in common here! Prayers for both you and Jason. I am immune compromised and having infusions. Let’s hang in there together! ❤️
My daughter has infusions too. Same thing I think
I too have CVID Common Variable Immune Deficiency. The struggle is real everyday. “Jesus is my strength and song “ Exodus 15:2 He has truly helped me everyday. I was finally diagnosed back in September 2019. I give myself subq infusions at home once a week. It is literally a blessing and I’ll never take it for granted. I’m still sick though with sinus and ear infections ~ had surgery this last Oct and I’m still sick and the Surgeon and his nurse are dismissing me and not willing to look more into it, or help me to get better. So I truly needed to hear and see this video today. I’m going to call them back today again and push back. They never returned my call sense last week, and I had just resigned 😑 to just dealing with it and just wait for the healing that they said could take 3/6/9 mos to a year. Thank you so much for sharing your struggle, sickness, and your heart of all that you have been going through. I’m sorry that you have had so much to deal with~ the IVIG therapy I hope will give you much healing, strength and hope in a better everyday life. It certainly did for me. Just a bump in my journey that I need to push through and get this past surgery resolved. I wish you health and happiness. You are very strong, and a very caring and kind person. God bless.
Retired nurse here too- feel so bad for you!!! You are dealing with so much with Jason’s diagnosis and always seem so upbeat. It’s ok to be real and I’m sure you will help someone in doing this video!!!!! I hope you get the help you need and feel better for the first time in your life. I have some chronic issues and you just learn to put up with them but it would be wonderful to be rid of them!
Leslie you always look so put together one would never know your struggles. I am a retired nurse who battles with depression and totally understand the outward appearance can always be deceiving. Being dismissed by another healthcare person is maddening. Bless you for your determination to persevere through all this. I have such respect for you. Will keep you in my prayers. ❤
Aaaaw I know that feeling hon! I've been going through medical appointments for so long and yes you are in charge of your own health! 👍 It took me 7-10 yrs to get my Fibro and Sjogren's diagnosis. I went through hearing EVERYONE tell me there's nothing wrong with you!! You can't possibly be in that much pain! Nothing is showing on your labs!
Please put yourselves first love and I will be here rooting you on.
I just got diagnosed with Lewy Body and your videos are key to my learning. See ya on Instagram 😊
I’m so sorry for all that you went through and are going through 🙏🏼❤️
🙏🏽 for you Tory
@@dino946 😊🤗Ty
@@ACharmingAbode your in my prayers for your medical treatment,😊🤗🙏💖🌼
I don’t understand Instagram. I went over to follow you and there are all sorts of other things and people on what I thought was your page. I did sign up to follow you so I guess I’ll just see what happens.
Tears in my eyes not only for you but also for me. I am currently being dismissed. I thought by changing from a PA to physician, I’d be listened to…NO! Throw me pills with horrid side effects. I’m going to seek out a naturopath physician. I’m also an RN but patient first. Not being believed is the ultimate for me. Prayers for US, Leslie. I’m so glad you were listened to…I’ll wait my turn! 😢
Praying for you 🙏🏼💕
@@ACharmingAbode Thank you! ❤️
If you've ever heard of functional medicine, that is a route to look into.( I can't find a naturopath around me) I'm currently doing that and they take a deep dive into your health and use nutrition among other things to treat the root. Not to mention they take lots of time with you, and your not rushed in and out and dismissed.
@@Jen-zz7nv I live in a rural community so I have to take what I can get.
@@Gramsofboys I totally get that. Praying for you.
I needed to hear this so badly! As a momma of a cancer survivor I have always told any who would listen to advocate, advocate, advocate for those you love with people in the medical field. It is very easy to feel like you are not being heard. But for myself I never even try with my own health. It has been on my mind a lot lately and your sweet video was just another witness of that!
May GOD BLESS YOU!!!
✝️🙏🕊️💜✝️
This is going to help alot of people. Our family will appreciate your transparency. You are right On track doing what you love as you can and are able. It’s your “ministry” to us and you are not done!
This whole video my heart was embracing you, Leslie. I am thanking the Heavenly Father that you have found out why you’ve been suffering all your life and praying that you will be able to receive the medical help you need. You have indeed been a master at hiding your health issues behind the joy and passion you bring to us your TH-cam family. I always look forward to your Sunday videos and will be here every time the notification bell rings!
Oh, Lesley. You are such a special person. I’m sorry you’re dealing with all this. I’m keeping you and your family in my prayers! Hang in there, friend!
THANK YOU! I am that one person. I am on the liver transplant list at 58 years old. I was dismissed for years, and even my transplant team dismissed me in this past year. Every high fever, all the terrible pain in my joints, just the psychological waiting. My final visit in Boston they had the nerve to say well you look good. (my scores were bad as in still qualifying for a transplant) but I look good? I am in no way good. They actually told me that it would be years to wait due to the day drinking during Covid- I had been essentially 'bumped'. My husband and I went home, sold our house, and relocated to FL. This transplant center wants for me to get a liver and live. This institution treats me like a sick, but hopeful, person. Your video is 100% necessary for the friends and family who are well and cannot imagine what we chronically ill people are experiencing. I believe that my life has purpose and that I am in God's hands. I wish you more answers, more treatments, more days pain free. Thank you, again.
Can't imagine being the caregiver AND being sick! Being sick is such a waste of time. Blessings on you and Jason♥️
You are such a trooper! Praying for you and Jason. I currently take responsibility for my 88 year old mom, my 72 year old husband and my sister and I. I have had to advocate for all of us and I so appreciate your words today. God bless you! And YES, I’ll be right here when you post, regardless of when your last one was!
I'm praying for your next appointment.
I’ve been dismissed by several doctors for the past year 😢 still have no answers for the pain and issues I’m having! I truly feel like they just don’t care. I’m sorry you’re going through this too! 🙏 for all of us
I'm a retired nurse and totally understand how you feel about being ignored or dismissed by doctors. I knew something wasn't right with my health and went to several doctors with no diagnosis. Finally found a doctor who listened and cared. Finally dx with RA and Fibromyalgia. Treatment has helped and I learning what helps and what doesn't. I'm so glad you persisted and got answers. Prayers for you and family. Take care and do what is best for you. We will be here waiting. ❤🙏
My husband was I’ll, diagnosed with MS 3 months after we were married. I was his main caregiver for 22 years. I wish I had known this when it all started, you have to have a consistent relief person. You have to remove yourself and just concentrate on self care. Please do this for yourself. I will pray for you.
I am so thankful you posted this! Sooo many people are at the health professionals’ mercy. I pray you will get a handle on your condition and live without sickness in your daily life. Thank you! ❤
As a RN also newly retired, I have seen this happen so often! Unfortunately the medical community is not like it used to be! I also have issues and I don’t even share with my family as they don’t understand! I’ll pray for you! Keep the faith!
Praying for you and Jason. The Lord is your strength and you are such an inspiration to so many. Love your channel!
Wow, I am so sorry you have had to deal with your immuno deficiency for a lifetime. I can't imagine how exhausting that is. It took courage and energy to make this video for us, and I thank you. I really hope something curative or at least helpful will come of all the testing you've endured.
I also live with a chronic disease, large granular lymphocytic leukemia. I understand when you say you feel bad everyday and just keep the smile on your face! Or, but you look good…it makes me want to cry when I hear that. I for one will be with you whenever you are here, I’ve learned a lot from you through the years!❤
I am a TRUE ZEBRA!!! It took me about 25 years to get a diagnosis. I have Primary Immunodeficiency. I’m a Nurse. Very sick frequently. I am here for YOU!!!
Leslie, our daughter has Dysautonomia. It took 2 years for her to get a diagnosis. So many doctors, and the majority of them dismissed her. It’s a common practice amongst doctors and women patients. Praying for you to get IVIG quickly. It has helped her tremendously. Thank you for sharing your experience. No one knows how bad it can be until there’s an illness that’s out of the ordinary. Sending lots of love and hugs your way sweetie.
I’m so sorry you are going through this. It amazes me that you made it through Covid, multiple times no less, without dying, with having such a poor immune defense.
I’m so glad someone finally listened to you and I’ll be praying that there is something that can be done to help you. Even strong women need help. 💛
😅🤣😂 Can't be that bad then eh?
@Angela Petrie it is to different people. The problem is, no one knows who will end up with long haulers etc...
You are so inspirational. You brought tears to me and I feel I love you even tho I don’t know you. Thank you for sharing from your heart. I totally see you!❤️
@@Floatingaccidentallike Same as any other viral infection, or any infection then. 🥱 Next!
Leslie, you’re an outstanding human being! I’m a nurse, too & I’m amazed that your immunodeficiency wasn’t discovered sooner. I hope you feel a sense of relief knowing what’s wrong & knowing you can get care for it. I wish you all the best. 💖
I can so relate to your story. I've had several years of misdiagnosis and no diagnosis. I finally got a diagnosis after years of suffering and pain. I got to the point where I couldn't even walk. Finally, someone convinced me to see the right specialist because I gave up trying to figure out what was wrong with me, and it was determined that I have MS. It was a relief to get a diagnosis and get on the proper treatment. Finally the pain is under control, I was able to walk again, and I'm doing very well. Diagnosis is the first step in controlling your health.
My daughter has a diagnosis that is unusual. Watching her for almost 2 years go through multiple doctors and tests that showed nothing… doctors finally started giving her pain meds and antidepressants. I was so over it. I am a nurse too.
We took out an equity loan on our house and I got her an appointment at Mayo Clinic diagnostic services in Arizona. Within 48 hours she was diagnosed. If I had giving in to all those doctors- she would have given up. I am thankful to God that we were able to get her to a place that has doctors that listen.
I can imagine how hard it was for you to film this video, know that we are always here for you. So many prayers being sent your way, for both you and Jason…
You have to be your own healthcare advocate! You know your body & mind like no one else. We love you because you are “real”. We all have stuff we go through & it’s nice to know we aren’t alone but we also love the escape we get through you. Sending big hugs from Alabama to you Leslie & Jason. ❤
I am a retired RN and thank you for sharing this! EVERYONE needs to be encouraged to find those who will LISTEN! I always told my patients, “the squeaky wheel gets the grease.” My most rewarding time as a nurse was doing in home hospice. I received excellent and ongoing education on symptom control, especially for pain and agitation. So doctors would listen to me when I would call for help for my patients. Thank you again! ❤️🙏❤️And I am blessed to have a doctor the past 20+ years who listens, even if she doesn’t agree with my diagnoses for myself, 🤣, and she understands the pain I deal with osteoarthritis, including two surgeries, and how emotional pain can settle in our bodies and actually lower our pain threshold. Caring for Jason is similar to my dealing with my adult son’s death as it increases our vulnerability. God bless you both! And I am adding you to my prayer list.🙏🙏🙏
Thank you for making this video! The invisible diseases are hard to battle. I was diagnosed with SLE at 19. At the age of 56, I pushed back and stood my ground. I was diagnosed with Polymyositis in Feb. 2020. Within 12 months, I had over 12 inches of bowel removed due to acute diverticulitis, basal cell carcinoma, and breast cancer. Each day is a struggle, but I’m grateful to have life each day!
Hello Leslie
It’s been 20 years that I was diagnosed with fibromyalgia. Other doctors say it arthritis, others say it’s RA and Fibromyalgia together and still other doctors say fibromyalgia is not real but that doctors say that when they don’t know what I really have. . Either way pain is 24 hours but the worse pain is during the night and many people don’t understand this pain because they see me moving constantly. I have to go on with my life! I have my days of tears that no one sees. I understand you perfectly my precious friend. I am so glad that they know what you have now and praying you get the treatments you need. You are a beautiful strong woman and the Lord will continue to honor your faith in him and will help you continue doing what needs to be done. I pray for you and your husband to get through this life one day at a time. God is with you, in you and around you. Enjoy the good days. Keep up that beautiful smile. If you need to share with us and cry. Go ahead. Tears are free and also healing. We are here with you always whether you take a break or not. It’s going to be alright because God is on your side. He fights our battles. ❤
Omg. I can't believe I saw this right now. My daughter is going through the same thing but no answers yet. I shared your video with her. Thank you so much for putting this video out. I enjoy all your videos and you are such a a special soul. I am glad you got answers and I hope you feel better. We love you! ❤️
Thanks for the good advice, Lesly. I’ve been in the “I’ll just live with the pain boat” as Drs. haven’t diagnosed me. One even told me I needed a psychiatrist! I hope your diagnosis brings you better health! Take time off and don’t worry about the algorithm. ❤We’ll be here waiting for you to return ❤️.
Isn’t it awful we women are always put in a box of needing a psych doc because we have health issues or any other problems needing a man to intervene! A human male! My help comes from the Lord He doesn’t box us in!!
Sending you prayers and strength as you navigate this diagnosis…. Wishing you all the best and yes I will still be watching your content no matter how much or few! 🙏❤️
Leslie, my prayers are with you. I took care of my husband and mother for many years and one of my biggest fears was that I would become sick and unable to care for them. They passed within three months of each other and that pressure is gone, but I’m exhausted. My prayer for you is that your health be totally renewed and you have the strength to live your life well.
Hello from Montana! I love that you and Jason do these videos. I hope it helps to know that your family is a blessing to many. And it helps you feel like you are community. So many, many, many, many new normals for you and your family. Take it one second, one minute,one hour, one day at a time🐻 The two of your love story is absolutely beautiful and has touched a deep part of my heart 🐨
Just wanted you to know I will certainly pray for you. Also, for someone who is chronically I’ll, you look great! And I’m not saying that in the vein of - “ how can you be sick? You look to good! “ I’m saying it, “ wow, in spite of being so ill, you look great!” Your hair is so, so pretty, I would kill for that beautiful head of thick, non frizzy, curled hair! Anyway, I’m just so sorry you are and have gone through so much. Hoping you can finally get it resolved. Thankfully, the great Healer is your good friend. He brought me through a debilitating autoimmune disease, He will do it for you!
Just wanted to thank you for sharing your experiences, caring advice, and beautiful spirit with us. Whether we need this gentle push now or sometime in the future, it’s a good reminder to have courage to speak up even to medical professionals. Watching this video made me think of the quote “Just because someone carries it well, doesn’t mean it isn’t heavy” Jesus in you is so evident, thanks for pointing to Him. I appreciate your content- real joy even amidst hard circumstances is rare. Praying for you and your husband!
Dang! This sounds like my sister. She gets sick a lot! Thank you so much for making this video. I’m going to send this to her. Thank you, Leslie. Us women are so good at just carrying on ❤️
An RN here also. So glad you finally got a diagnosis and a treatment plan! I became immunocompromised following a flu shot. Had GBS. It took years to get fully recovered. I have autoimmune issues now. But, having had that experience and immune issues, am now able to forgo all shots in the future. It took a bit, but finding a doctor that listened made all the difference. The stress of caring for someone with Dementia is an immune buster in and of itself. You are blessed to have a great support network. Ptaying for you!
What a blessing! With being a caregiver for 31 yrs our special needs son. He’s has 27 surgeries and so many time I had to step up to be his advocate. But now I had started catching everything that comes along. About 5 years back they said you probably have fibromyalgia but just three weeks ago I had strep and I felt good for two days and then I tested positive for Covid. It just keeps coming back to back anymore. you’re right you still have to be a caregiver but you’re right. Also with God there by your side, you can make it through anything.❤ keep on for Jesus and your hubby! ❤
Lifting you up in prayer! So proud to hear you kept searching for answers and got them!
Prayers for you Leslie! You have a lot on your plate and yet you’re still always so positive and looking out for others. Please take care of yourself too tho! We’ll still be here ready to watch! And you’ve got loads of prayer warriors out here ❤
If nothing else, Leslie, by sharing your story, by educating the public and your friends about the symptoms and severity of immunodeficiency- I HOPE the people who hear you will take time and care to be EXTRA vigilant around anyone who is immune compromised. All during the COVID epidemic I felt so frustrated that some folks felt they could ignore the needs of others and their own responsibility to help to keep others safe. You are very brave to share your story. Thank you.
My husband has been getting IVIG therapy for 5 years for CIPD. He too was ignored and then blamed for “drug seeking” for pain no one wanted to investigate. But God has lead us to new practitioners to give us answers. God bless you as you walk through these trials may you find springs along the way to refresh you!
My daughter who is 28 was just diagnosed with Specific Autoimmune Disorder and will do infusions once a week probably for the rest of her life. She is 28 and your story is just like hers. I've talked about you and she wants to follow you now. And your journey. She is also Christian but is struggling a lot.
❤ 🙏🏼 You are showing us perseverance with grace. Hope you’re feeling better soon and get the coverage you need and deserve for IVIG
I hear you, Leslie. Currently still advocating for myself and my husband. Spent years advocating for my parents. I was a shy, quiet child. However, events in my life from 22 years of age until now (67) have made me learn how to advocate for others and myself. It makes us stronger. I could relate to everything you said today deep in my heart. You and Jason are a blessing to all of us. Thank you for sharing. 🙏
Thank you for speaking up and out about this very real topic of being dismissed. I am so glad you finally have a diagnosis so you can have a plan moving forward. I had a gastroenterologist put his hand on my knee and say "you know, sometimes when we're afraid to be sick, we make ourselves sick." implying it was all in my head, just because after months of testing, they couldn't figure out what was wrong. The only reason they kept searching was because I said "I understand you don't care if I die, but my family does!" (people who saw me literally thought I was dying of cancer because I had lost so much weight and was so week I couldn't walk). Turns out I have gastroparesis. It was worse than they've ever seen. My stomach was totally paralyzed, not just slow functioning. And this dude had told me it was in my head!!! So, thank you, form the bottom of my heart, for telling people to keep pushing. It truly could save a life.
My name's Kim. I just wanted to let you know that what you've written here has helped me, just like Leslie's video has helped. You too are an inspiration for me to keep seeking answers to my personal health issues!! So thank you🥰💜
Advocating for ourselves while feeling bad can be extremely challenging, but don’t give up! Sending prays for answers for you and complete healing ❤️
I went my while life feeling sick. I got dismissed and actually called a hypochondriac and dramatic and overly sensitive. Every dr told me I had ringworm and gave me steroid creams which took away the ring patches but I still felt so bloated, had diarrhea, brain fog, social anxiety, major depression and so much more. Anyway years later a woman from my church told me she thought I have celiac disease and encouraged me to get tested and sure enough I texted positive for celiac disease! I felt amazing within 2 weeks of only eating whole foods and gluten free. It all makes sense and I have gained my confidence back. I always felt suppressed by family members and Dr's. It was a horrible and lonely feeling. I STRUGGLED allgrowing up. I am so thankful for that woman who told me about celiac disease. What a true gift she gave me.❤
You are on my prayer list along with Jason. There are a lot of people that are on my prayer list but GOD IS GOOD! Retired nurse here also and it’s always good to advocate for yourself and not rely totally on the medical profession. It will sometimes take years to get to the right doctor who will take into account the entire body! I’m so lucky that I have one who listens well and also lets me research my natural remedies. God bless you and your family.
Preach Sister!!! I have MS. It is invisible to everyone else and I make it so. If people had to live in my body for a day then maybe they would understand all the things. Praying you get the help and treatments you need soon and it makes you feel better!!! 🙏
Oh Leslie, I'm sitting here watching this with tears streaming. I see so much of myself in you. I have been very sickly all my life. 12 years ago I was diagnosed with a rare auto immune disorder Dermatomyositis. I have taken IVIG every two weeks for all these years. I just want you to know that I SEE you and the wonderful person and caregiver you are. As a caregiver myself you often feel like you are "circling the drain." This is a very odd question, but were either of your parents in Vietnam? They think a lot of my health issues stem from my Dad being there when they sprayed Agent Orange.
my husband came home with boils on his chest and back from Agent Orange. He had a work ethic and worked long hours at UPS 40 years. He died from Agent orange cancers , 8 to be exact. He was a marine till the end. We found out that Agent orange goes to the 4th generation with these awful conditions and one of my daughters has horrible boils now. They poisoned many many of our brave men and women who served in wars and now we our paying the price..I know where my brave Jim is and he has no more worries He is with the Savior. The devil did not win..I am praying for your dad and you…..
Absolutely heartbreaking what they did to our brave servicemen.
Hi Leslie! I love decorating shows but interestingly enough I've been drawn to your vlogs about the journey you and Jason are taking through this world of dementia. I'm a recreation therapist who works in senior care and I feel a burden and passion on my heart to understand as much as I can about dementia and to help others understand. I want to be able to relate to the people in my care the best way I possibly can. I've been so inspired by your journey but none quite so much as to see this video of you here. Thank you for being so real with us. I believe in Jesus and he is my rock and I will be praying for you and Jason, particularly as you are navigating yourself through this new diagnosis.
I’m so sorry you have this. All of us that have autoimmune diseases understand. Takes 9-10 years for diagnosis. And each time you see the doctor you have another autoimmune disease. I’m sorry to say I don’t think you will notice people understanding you are truly sick even though you don’t look it. In 15 years I don’t notice compassion. And people don’t want to hear it. I do know the struggles and I’ve learned to care for myself. But it makes me lack compassion for those who showed me none. Give yourself time to cry and mourn the person you were and the things you used to do. Wish you and Jason the best
I take my hat off to you! I was a caregiver for my mother who had dementia and Alzheimer’s until she went home to be with Jesus. To be ill and a caregiver is unbelievable.
You pushed through and found answers and good for you sweet lady.
I pray God’s healing power over you. That He gives you strength and wisdom to continue to do what He has for you to do.
Heal her Lord…in Jesus name.
When You know something isn't right you have to become your own advocate. I was in urgent care the ER Doctor told me it was probably skeletal I disagreed and after 6 hours he came back to me to tell me I had cancer all through my abdomen!! I was diagnosed later with Lymphoma so your message is very relatable and important! Thank you for sharing! You are not alone!❤
I totally understand being dismissed by healthcare professionals. I was constantly dismissed for 11 weeks after I gave birth to our son in August. I had to advocate for myself for them to take me seriously. Come to find out I had retained placenta! Had I waited like they told me to do, I could have gotten severally sick. I completely agree that when you know something isn’t right, you fight and make sure you aren’t dismissed and they take you seriously. Because you know your body and you know when something isn’t right. Praying for you and your treatments!
You have such strength of character and you’re an inspiration. I’m sure it was such a relief to finally have some answers to your health concerns… that is half the battle! May you have good health, love and joy in the days to come.
What an amazing video. My husband was terminally ill and I always felt he was ignored during doctor visits as the doctor would talk to me as if he wasn't in the room . I felt my husband was disrespected at his most vulnerable time. Kudos to you for being a champion of your own health
I have been taking IVIG I fusionsfor 15 years...every 5 weeks for 2 consecutive days...about 7 hrs. Per day...keeps me going for a chronic illness and allows me to lead a semi-normal life. To look at me, you would never know that i have a bad debilitating disease. Hang in there! We just play the hand we are dealt. In my prayers! Ronda from Alabama
Dear Leslie- my husband has Lewy Body Dementia too. I love watching the videos of you two together. His mother had LBD too, so we know what our future holds. I have chronic immune problems and constant pain, so I understand how you just have to carry on. You just power through because you have no other choice. For the last few years I’ve been having memory problems and finally last year I got a new doctor that actually listened to me. After much testing and an MRI I got diagnosed with Mild Cognitive Impairment. No one wants to label me yet with young onset Alzheimer’s, so I go along doing the best I can. My husband and I are quite the pair now! I believe this is your time to slow down and take care of yourself. Learn to say no and learn that things don’t have to be perfect. Take time to enjoy the little things in life and cherish family more than ever. I feel strongly that you will begin to feel better and it will be life changing. We all support you and we’ll be here for you if and when you make another video. ❤
There is something tragically liberating to finally have answers. :( I appreciate the tears (my body reacts negatively to my tears... no break for the empathetic!) so I get the reality of the exhaustion, dry eyes, and maybe headache, on top of the "vulnerability paranoia" putting yourself out like that. You articulate this journey so beautifully.
I feel like you are speaking my story! I rarely feel good. I’ve been to the doctor so many times. The rheumatologist said fibromyalgia. Yes, I hurt all over most days and have major fatigue, but that never explained why I’m sick all the time. I stopped trying to get to the bottom of things. I’ve definitely been dismissed many times. Thank you for sharing this, Leslie! I hope I can get the courage to fight back! Jesus is my Savior too! ❤
OMG Leslie, I can not believe your dismissal by your own medical community. I thought I was crazy to present symptoms and be told to drink more water. I ended up so sick that I called my husband from work to get me medical help. I could barely walk or anything. By pure luck I ended up at clinic with a doctor who helped save my life. I had a perforated duodenal ulcer that damaged my colon and lead to sepsis. A very long road to recovery. You being a nurse I'm sure you know what I'm talking about. You are helping others to ask more questions. Thank you! Bless be with you and Jason. 🙏💖
Very educational!! I am 71 yrs old and I do not feel heard by my drs anymore. I have several autoimmune diseases so I understand where you are coming from. Jesus is all that gets me through each day. My prayers are for you and Jason. God bless you!! ♥️🙏🏻
We have your back, girl. I thank you for all that you continue to do for this community. I am a 3 yr long Covid sufferer, neurological impact, as well as experiencing compassion fatigue from care giving. We have to take care of ourselves. We’re going to be right here for you. Blessings to you and Jason
Well said
Yes, I too have been dismissed during my life. I am hoping that things start looking up for both you and Jason!🙏
Girl! Look at all the love after you just posted. I have soooo much admiration for you. I can’t even imagine what you’re all capable of if you felt good on a regular basis and didn’t have to be a caretaker full time and and a mom and grandma. OMG. This is a beautiful vlog. Inspiring at the very least. God be with you and your family and your journey.
Q1
Another retired RN here! My husband thinks that nurses have some kind of "secret clan" that we don't even have to talk, we just KNOW. I understand your frustration, feeling dismissed, labeled etc. It took a long time but after years of strange symptoms, aches and pains etc was diagnosed with syringomyelia in 2006, also congenital. Drs and Clinicians, please LISTEN to your patients!! Praying you get relief soon, I know you're relieved to finally have a diagnosis.
I am a retired teacher and I have learned to push back because if I didn’t people would walk all over me. Being a teacher I had to be listened to and heard.