how i get through hard days living with a chronic illness | days in my life with gastroparesis
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- Опубліковано 1 жов 2024
- Hi friends! In today's days in my life living with my chronic illness gastroparesis, I show you what I do to try to cheer myself up when I have particularly hard days.
It is so important to allow yourself to feel your negative emotions in order to get through them, but I also like to do things for myself and remind myself what I am capable of and what I enjoy doing.
So in today's vlog, I go to the craft store to get various sewing supplies, thrift shopping and to target/starbucks to get my favorite drink from there.
And then I tell you a little more about what went on behind the scenes of my doctors appointment. I really hope that section didn't come across the wrong way and that you understand where I am coming from! It is important to advocate for yourself when you know you need something!
And this video is also filled with some exciting news, packaging my etsy orders, mini grocery haul, organizing my garage and preparing stuff to sew for my etsy.
Taking that extra time for myself to do what I love really helped me get through these tough times.
You all are so strong but it is also okay not to be strong all the time. Just don't forget who you are and what you love doing!
I hope you enjoy the video and don't forget to give this video a like, comment and to subscribe for new videos every Saturday! And as always, don't forget to spread kindness and joy!
✩My instagram: kenna.krueger
✩For business inquires: makennakrueger@gmail.com
✩My Etsy: www.etsy.com/s...
Music
✩Music by The Ambient Light - Back to Life - thmatc.co/?l=2...
✩Music by Ping Pong Club - She's Your Trouble - thmatc.co/?l=C...
✩Music by Mr. Jello - Serenity - thmatc.co/?l=1...
✩Music by Fiji Blue - It Takes Two - thmatc.co/?l=C...
#chronicillness #gastroparesis
Hi friends! Thank you all for watching this video. Chronic illnesses come with a lot of up and down moments and that is completely okay. During those down times, surround yourself with things or people that make you happy! I am so glad and so thankful that I have all of you to help me get through the hard times as well! I hope you have a beautiful weekend💚💚
We all seem to get referred to psych services suffering from Gastroparesis and EDS etc. I also feel bad for those that are firstly incorrectly branded as having an ED (Eating Disorder) and that being used to deny some patients the tests and treatments they need. However for those suffering from ED’s I don’t feel there is the right and best care for these people either. Good luck with the next batch of pads & clips 💗and a house move how exciting xx
Yes it seems so common! And that’s what I don’t like about that either. People with EDs deserve treatment and even people who have had EDs in the past and now have Gastroparesis still deserve proper care for their Gastroparesis. There is soooo much that needs to be fixed! And thank you so so much it is so exciting!
@@KennaKrueger I couldn’t agree more with what you wrote hunny let us all know how the move goes I’m in the middle of packing up a 3 bed 2 storey home to be downsized but being messed around won’t know now after packing up so much stuff if it’s going ahead or not until mid week it’s a nightmare and my tube has blown a hole through the G & J tube after I had a blockage and where I live in the uk south west a tiny town called Swindon that’s sucky! It takes them over 6 months with a tube that’s non functional and I was left this way last year until my Intestinal failure team in Southampton UK stepped in and admitted me 12/21 to 01/20 this year it was a hard time and now I don’t know how, who and when my now broken tube will be replaced only managing 10ml/hr and vomiting as it’s going into my stomach 🙈😂😢us tubies have it hard at the best of times sending love & positive vibes for your move from the UK ♥️🇬🇧
I totally understand you on the psychologist front. I was on my second admission to hospital for life threatening low potassium due to GP and they wouldn’t give me any investigations for my GP which was undiagnosed at that point until I spoke to a psychologist. It’s so frustrating that they ignore mental health until it’s convenient for them to blame all my symptoms on that, it’s like you have to justify your symptoms and it’s not fair. I could hear the medical team talking outside my room that they were just waiting for the psychologist to come in to diagnose me with an ED and then they can discharge me, even had my gastro dr tell me I could stop losing weight now cause I’m skinny enough, when I was literally starving to death without treatment. Had the GES 3 weeks later and only had 16% clearance at 6 hours, I wanted to go back to the drs and shove the tests results in their faces to prove it wasn’t all in my head. (These were all hospital staff, my private specialist has been amazing and I honestly owe him my life, he has always believed me)
Reading this broke my heart, but thank you so much for sharing your story. I cant believe that this is real, happens frequently and is allowed. I love what you said about how they ignore mental health until it’s convenient for them to blame the symptoms on that. That is so sad but also so true. I am so so glad you are finally getting the treatment you need, you deserve that, we all deserve that, but I am also so sorry you had to go through all that in order to get where you are now. It must have been so scary and frustrating.
I completely understand the feeling of being told to see a therapist. I think they really do help but I understand why it’s so sensitive bc to me it feels like they are saying it’s all in my head.
Yes exactly!! Definitely not a bad thing, especially if a doctor would suggest one for coping but if it is more of suggestion to see one as an implication that the symptoms are in your head when there is evidence it is not then it is not good
Another thing that the doctor might be internally thinking is "Gee, if I was experiencing all of these chronic health issues, I would be super depressed and anxious, so this person obviously must be super depressed and anxious." But in reality that doctor has lived a privileged life going through med school, is making tons of money, is living a very comfortable and posh life, and has never had to face or overcome any major challenges or hardships in their life. Sure, they likely wouldn't be able to deal with any of this if they suddenly had to experience it everyday. However, they can't truly put themselves in a patient's shoes to see how the patient is truly feeling, adapting, and coping with their health issues. They might assume that the patient needs a mental health referral to help develop coping skills, when the truth is that the patient has already developed healthy and effective coping strategies already - simply out of necessity.
Sorry for the bad (mental) health days. I was recently diagnosed with gastroparesis, and your videos help me so much - keep up the awesome work ❤
Thank you! And I am sorry you also have this diagnosis but we can get through this together!!❤️❤️
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I am so glad I saw your channel today. It’s been a hard few weeks for me and usually I am very positive but today it’s been so hard for me. My name is Gloria and unfortunately I’ve been diagnosed with many health problems that forced me to go on disability. I used to be so active and loved to exercise and was a workaholic. Now I am lucky to get out of bed, since I’ve been diagnosed with fibromyalgia and neuropathy. Usually I get up and get ready even if I am not leaving the house, but lately I haven’t felt the strength to do that. I wish you the best during your journey. You are so young and beautiful. I am 45 now but got severely sick when I was 32. May God bless you always
always remember that YOU are the only person living in your body and you know when something is wrong! medical invalidation is awful but i’m praying for you!!
Yes that is so true I need to remember that! Medical invalidation is so prominent. While it sucks I am kind of glad I was able to fully experience it so I can be more empathetic to others who go through the same thing because I really didn’t know how prominent it was.
In my experience they send patients to psych because they are out of ideas. I agree that psychology can be helpful for learning to cope with declining health, but it cannot fix gastroparesis. Maybe you could look for a new GI doctor? (I know the struggle, I am on GI number 4 since my diagnosis 1.5 years ago) I hope you keep talking and sharing about it. Many people can less alone when watching videos like yours and relating to similar symptoms.
Yes that sounds about right! I will have to look into one that will hopefully have some new ideas. That is so many GIs and unfortunately that’s what most of us have to go through because either doctors don’t know much about the condition, they don’t believe you or they just don’t know what else to do! I definitely plan on continuing to talk about it because we need more awareness!
This is an excellent comment by Lois! A psych referral of someone with complex chronic illness is almost always due to the doctor giving up on the patient, because they either don't want to admit that they're over their head or simply don't want to put forth the effort to figure things out and find a better treatment plan. I went through issues like this before my Ehlers Danlos syndrome was figured out, since doctors were completely clueless about it. Since this doctor seems to have given up on you, this is just a sign that you need to see a new doctor. None of your doctors have even tried other digestive motility treatment options such as Mestinon or some of the other medications! There are several treatment options still left on the table to try with you, and this doctor is just walking away!
In a previous post, you mentioned that you seemed to be on the hypermobile spectrum. Since Hypermobility Spectrum Disorder, Joint Hypermobilty Syndrome, and the 13 different types of Ehlers Danlos syndrome are well-known for causing gastroparesis and intestinal dysmotility; I highly recommend you see a rheumatologist or other expert to screen you. If you have one of those as a unifying diagnosis and identified as the root cause of your digestive issues, it would give you a whole lot more clout and firm ground to stand on in the future if other doctors try to chalk up psych issues as the cause of your issues.
Don't give up on getting answers, and don't give up on exploring all of the various treatment options that are available!
Thank you so much for the advice and for supporting me! I am not going to give up because I know there is something better out there for me!
At 12:56 is some incredible cinematography and camerawork! It added some extra fun and artistic touch to hearing the amazing news about the house! Congratulations on the house!
Haha thank you! Whenever my boyfriend has the camera he likes to play around with different angles! And thank you so much!
@@KennaKrueger Please let him know that I enjoy his camera work! Also, I think I saw his brother in an earlier video, and that guy is hilarious! Please bring him back!
My first doctors didn't believe me and just said it was my anxiety so i understand questioning if you really have an illness or not, you're not alone in that. And the mental toll this disease takes is a lot but we just take it one step at a time. Thank you for sharing and inspiring! It's helped me not feel alone in this struggle. Best wishes and congrats on the house!
I feel like unfortunately we all go through similar experiences like that! I have 3 positive GES and other tests that align with Gastroparesis and I still question myself sometimes because of what I am told. I am glad I am not alone in that! And yes it is hard but we do just have to take things one step at a time. Thank you for watching and supporting!!💚
@@KennaKrueger All of my GES tests have been inconclusive because it's gotten so bad i can barely hold water down, so i find myself questioning if i even have anything even though the symptoms are there. Coming to terms with gastroparesis is hard and i have to remind myself that it's okay to go through the stages of grief. But we're not alone in these struggles, even if it can feel like it at times. Keep going! Just one step at a time! And when i feel down I'll look at the tubie pads and clips you made and smile, knowing that I'm not alone!
Aww no I am so sorry! I feel like we all have periods where we questions ourselves and our symptoms but you know your body, you know what is really going on and your symptoms are valid! You are definitely not alone and we will get through this one step at a time!
I just got around to finishing this video. The Mayo fatigue is unreal as you know. Hah! OMG you got a house! I jumped up and down for you! Getting a house is such a huge relief. We just got ours less than a year ago. It is going to make life easier for you to not have the worry or moving over and over. Life is so much calmer. I am so happy for you!!!
The fatigue is soooo bad!! And I did I am so excited it had been such a big relief. Thank you so so much!!
Shopping therapy IS a real thing .....gets you out of the house, distracts your mind from worries for awhile and you sometimes end up having a good day after all!
Yes it is! I am so glad I ended up getting myself out of the house and distracting myself. It helped soo much!
I have been going through allot of stomach issues for the last 2 years and struggle to eat. The doctors didn’t believe me and thought it was all phycological and sent me to a phycologist for 4 months. It didn’t help my symptoms but was beneficial to speak to someone, keep on fighting your symptoms and feelings are valid don’t let doctors take that away from you. X
Aww no sorry to hear you are experiencing similar symptoms as well. I am happy to hear that you got some benefits out of the psychologist and I hope you are getting help for your GI symptoms now too. And thank you so much!
I understand the apprehension and agree that many doctors will send patients off to therapy rather than actually helping them. It has happened to me. But it should be both, not either or. I do not know if you have every done therapy before, but I do think doing at least one round of sessions with a good therapist is very useful to help us deal with our conditions and changing circumstances. I encourage you to find a therapist that is either specifically a pain therapist (often attached to a pain management department) or deals with patients with chronic health conditions. And if the first therapist does not work, I would encourage you to try someone else. I do think it is worthwhile to get a good one.
I have done therapy many times. CBT, MBCT, Pain therapy, etc. Sometimes it has helped me deal with my health situation by giving me someone to talk to who can help validate what I am feeling. Other times it was not only not helpful, but the therapist had a fundamental misunderstanding of what "chronic" means and seemed to think everything was exaggeration/anxiety simply because "you're still young". For example, I am often very anxious about how my condition and symptoms effect my family and friends. A bad therapist would focus on the illness itself, saying I need to think more positively about that and not catastrophize it. A good therapist would focus on the circumstances and feelings surrounding the illness, saying I need to think more positively about my value and not catasrophize how other people feel/think about me. Same concepts, but different focus. I personally find Mindfulness Based CBT, the concept of impermanence, and working on accepting my current situation to be the most helpful approach. By accepting the situation I can then strategize working around it, rather than fighting against it. Always pushing for a better quality of life and seeking health, but living life to the fullest and being happy now rather than putting life on hold until I "get better".
I also deal with a lot of fatigue due to GP/POTS/pain. Something that has really helped is Modafinil, the slow release version of which is Armodafinil. It is a very, very mild stimulant typically used for narcolepsy, but also for other conditions which cause chronic fatigue. I've taken other stimulants in the past which either bothered my stomach, made me more tachycardic, or made my brain feel wired or jittery. But this medicine does none of those things, it just helps keep you awake and gives a little more energy. I used to fall asleep everywhere, even during conversations, and now I can stay awake through the day. And although I can take it up to twice a day, I take it more as needed based on how I'm feeling. My primary care physician prescribes it specifically noting it is for fatigue related to my conditions, listing them out. If a sleep specialist writes the script and narcolepsy is not notated then insurance will not approve the claim, so having your primary or another specialist do it is better.
Yes exactly! And I personally haven't seen one but it would probably be beneficial if I looked into it. Thank you so much for all the detailed advice! It sounds like you have a really good therapist that is helping you navigate the hardships of a chronic illness. I appreciate you sharing the details of what you have worked on. It helped me realize more how I cope with things and what to focus on as well. I am also happy you were able to find a medication to help with your chronic fatigue. That is one symptom that is so tough to continue to deal with and I feel like hard for others to understand how difficult it is!
I understand the whole psych part of it. Give it time to go through the process but the process is only going to take time. You got this girl. Keep it up!
Thank you!
And congrats on the house!! 🙂🎉
Thank you!
hey bestie!!! how is your pelvic floor therapy going? have you noticed if it has helped you a lot? i start mine soon! i love all your videos!! stay strong girl
Yes I think it has helped me! I still have issues with constipation because of slow transit but not as bad because my pelvic floor is starting to work correctly. I’m actually in the process of trying to lower one of my medications for constipation because I saw some improvements after pelvic floor therapy! Good luck with yours and you stay strong too!
You know yourself the best... never first that! Doctors see you for such a short period of time they don’t always look at the whole picture. As long as you give all treatment options a true chance then the doctor will try other things. I get this so often!
Yes I need to remember that! Thank you so much!
I love watching your videos so much, I find them so calming and therapeutic! 🤷♀️🥰
Aww this makes me so so happy, I love that they do that for you!💕
Good video❤️
Thank you!
I completely get this! For a long time, I was told I had an ED. I even went to an inpatient program for patients with eating disorders. It didn't help at all. I had to prove I didn't have an eating disorder to get the tube I so desperately needed. I totally get it! I'm here.
By the way, I loved the tubce pads I got from you.
Oh my goodness I am so sorry you had to go through all this and to “prove” yourself. I hope you are getting better care now and thank you so much!
"Sweater material" if it's cotton should be cooler than man- made fibres
Hello from Wisconsin. Congrats first of all on your house🏠 And I see your subscribers going up, I think people like you👏 I don’t have a chronic illness, but after my second Moderna shot, have had stomach ache for about 10 days, I think and hope it’s getting better, but it just gave me a hint of what it feels like to get up everyday and know your not going to feel well. It does weigh on you mentally. So again much respect to you, your videos are a ray of sunshine in our week☀️
Thank you so much! I am sorry you had to experience that as well even if it was only for a short time. Stomach issues are no fun!
One step at a time. Remember its best to treat the whole body. It can only be beneficial.
Yes so true!
Yay was so excited to see ur upload my surgery is Wednesday im so nervous
Thank you and good luck with your surgery you got this!!
@@KennaKrueger ur too sweet doll
They do that all the time doctors ask if you have a psychologist and yet what’s that got to do with stomach issues I’ve heard it so much over the years but with all my health problems why could you or why would anyone want to suffer when you find out what it is I would make sure you let the same doctor know ....my back is still painful there’s like fluid on ,u spine and it’s feelable on the right side more my pelvis had moved higher then I got the fluid and pain and now I can feel like cyst like things I have an mri next week and the surgeon finally messaged me no results just she wants to see me she said she wouldn’t if she couldn’t help me so I’m now stressed about is it surgery time or can she help me without a stoma 💕
Yes I feel like a lot of us have similar experiences! I am so sorry you are still in a lot of pain, but I am glad you finally have an appointment with your surgeon and I hope she can help!
@@KennaKrueger I feel we do sweet don’t feel alone with the doctors who like to comments about it being mental health related you will find out what is wrong with you fully I know you will ...thanks love it’s very you have been with me through this long process I did ring the receptionist for my surgeon to say what’s the results she said she would send it in a separate letter so then I may no more of what’s wrong 💞
You GO girl!!!! You have totally inspired me to get back into my sewing......Amazing. And first cab off the rank is a pinafore dress, which I don't have a pattern for. So instead of buying one I've used a super baggy pair of cotton overalls made by Mossimo, that I bought in Target here in Australia. And best part is I get to use my New Retro style computerized sewing machine made by Singer. Love love love LOVE the pantts you made also. I too am hooked up for overnight and part of the day feeds through an NG. Ill find out on the 5th of July whether or not I am getting a G Tube. Fingers crossed all goes well. Your right about keeping yourself occupied as I seem to ignore the stomach pain . Thankyou from the bottom of my heart for all the help and advise you have given me.🤗😉😎😲😢🤕😷💖💝💜💛💚💚
Thank you!! And aww yay I am so glad you are getting back into sewing it is so fun!! Ooo that’s awesome that you are repurposing a clothing item and that new sewing machine sounds awesome! Good luck with your appointment I hope it goes well! You are so welcome and thank you so much for your support!
You know what Kenna, I feel you. My previous GI doctor recommended me also to see a Psychologist but I really insist that I dont need one because I know my body and I know that there is really something wrong with me. But now, after all the testing I did the other week I realize that only God can heal me. I said to my self that I will keep on moving forward, just take my meds and enjoy my life every single day. Because worrying wont give me a single releive. So I will put all my worries to the Lord and He will guide my path. And I will share the same thing with you. I dont know if your a Christian but let me share you a verse from the Bible Jeremiah 29:11 " For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future". .......which means that it is not a promise to immediately rescue us from hardship or suffering, but rather a promise that God has a plan for our lives and regardless of our current situation, He can work through it to prosper us and give us a hope....Take care. Remember your a beautiful person. Enjoy your life because Life is too short.♥️
It is so much more common than I thought that people with our condition get referred to a psychologist. Thank you for sharing your story. I am so happy you were able to find peace with it and I love your change in mindset. I may not necessarily be a Christian but I definitely relate to what you are sharing! I do my best to enjoy life every single day and do believe everything is happening for a reason! Thank you so much for sharing how you are coping and sharing a verse because it helps me and I am sure other people who come across it, it will help them too! You are a beautiful person too and I hope you continue to enjoy life as well!
Yup gastroparesis is not fun and I’m dealing with bleeding in my vomit tmi but yeah and I can smell it also coming up from my throat and nose idk I might need to get another upper endoscopy ugh I hate them but that’s just life with chronic illness I think I need to get it checked and I’ve also been having a hard time eating still gastroparesis isn’t fun at all and today I’m gonna just eat soft foods
Aww I am so sorry it sounds like you are going through a really rough time. Definitely talk to your doctor about your new and worsening symptoms and hopefully they will be able to help!
I’m the third comment!
Yay!
@@KennaKrueger omg you actually saw my comment!
I love your vids and I find them so beautifully done!
Of course I did! And Aww thank you so much!