thinking of you and praying , you have taught me so much , just found out the other day my son age 17 has eds , took forever to figure it out , you are making a huge difference hun thank you for sharing your life and awareness
Hi Cheyenne, I’m so sorry all of this is going on with your Blood Pressure. With me it’s the opposite, mine is so high I was hospitalized around Christmas because they couldn’t get it to come down. It was 198/125., and I was on medication for my blood pressure issues. Now they can’t find a medication that I’m not allergic to. It’s scary for me because I have vEDS, with 2 Aneurysms in my Brain and they found that my Aorta by my heart is starting to dilate. So now I’m terrified, and afraid to go to sleep. The other thing is because it’s so high I’m having panic attacks, even in my sleep, and horrible anxiety. My doctor just told me “Well go find a Cardiologist “, not so easy to do. I had one and then she said my health scared her and she didn’t know what to do and that I needed to find another PCP. I’m am dislocating more too, it’s all just too much. I’ve already had 3 strokes. So sorry for going on about myself, I guess that’s what happens when you have no one. I lost my mom when she was only 38 yrs old from cancer, my brother and my beautiful grandma. Anyway, please keep your spirits up, you always do, you are so strong. I’m so happy you have all the love you do around you. I’ll be praying for you…always. ✨💫🦋
Glad to see you’re back to posting. I can see you’ve been juggling a lot these past few weeks. Thank you for taking the time to teach us what to look for, what questions to ask, and for explaining connections the way you do. Watching your video today was a bright spot in my day. I love how Teddy rests his head on you. What a cuddle bug! ☺️ Thank you, Cheyenne!
Love your videos 🥰🥰 would also just like to say hi to everyone on here !! I have Ehlers-danlos syndrome, POTS, MCAS, Gastroparesis and more ! We have no EDS specialists in Ireland so I set up my RUclips channel Lisa's zebra life to raise awareness and spread a bit of joy and positive vibes! It would mean the absolute world to me if any of you would subscribe!!! All my love, Lisa xxxxx
I have MCAS and I’ve don’t have a dr that really knows how to treat me. He’s an allergist and is aware of MCAS, but basically I’m my own dr. Do all my research off the internet abs your channel has been so helpful for me. I know you’re a patient of Dr Afrin. Do you know what he feels about people with MCAS and the Covid vaccine? Are people with MCAS able to receive the vaccine or should we not?
Hi, just saw your post and the title really got my attention. Every time my daughter told someone she was allergic to LR they questioned her. Now I think we know the reason. So, thank you for the post, and now I will call her home health care to find out who processes them. She also has MCAS and cannot get the vaccine, yup allergic to one of the ingredients so, I feel your pain with these maskless sneezing coughing ding dongs
I'm so sorry you're experiencing all this As a side note, your pink mask looks very pretty on you, especially with that pink top too! Teddy is so sweet how he is laying on your stomach
I’m so glad you are getting everything all sorted out! It would be great if you can get to point that you don’t need steroids daily as their side effects are horrendous long term. Despite many tries we’ve not gotten my adtenals going again. I too had a long time tpn pharmacist leave suddenly after making my TPN over 15 years. He just knew me well and had an incredible memory. Unfortunately, all the little things about what I could and couldn’t tolerate were not in their written notes at the pharmacy and its made the switch extremely difficult ! I’m now keeping close track of those things, but I know how frustrating that is!
I know about skin issue's. I feel for you.In 2016 I got an ostomy lost my bladder. My skin around my stoma,is alway's very sore.I have skin burn's all the time.I also have a true latex allergy blood test confirmed it. You are in my thought's and prayer's. I do hope thing's get better. You are a very strong person your amazing. 🌈🌈🦋🦋🌈🌈🦋🦋❤💚💜💙💛
I feel for you. I was just on the phone for the last hour trying to find one of my prescriptions made by a specific manufacturer. Apparently they are all out because after trying 9 different pharmacies I found that none of them had any and none of them could order any. Most of them carried a brand that I could not find any kind of an inactive ingredient list on, but one did carry a third brand that I found a list for and all of their inactive ingredients were ones I had taken before with no issues. I was literally in tears trying to figure it out.
I wash only thinking the other day you not produced a video in a while. I wish some of your doctors in the uk actually listen to you and not dismiss everything and clump medical issues to one umbrella term ie back pain and knees and hip pain is due to weight not actually something or depression causes all pain
Hi 🥰🥰! I have Ehlers-danlos syndrome, POTS, MCAS, Gastroparesis and more ! We have no EDS specialists in Ireland so I set up my RUclips channel Lisa's zebra life to raise awareness and spread a bit of joy and positive vibes! It would mean the absolute world to me if any of you would subscribe!!! All my love, Lisa xxxxx
I’m so sorry girl 💕😢 I’m so sick of learning the new things that I’m allergic to... like what are we to do when we can’t even get the vax without a humongous risk..?
Good to see you Cheyanne. Prayers for a wonderful week, and for your BP to stabilize!
thinking of you and praying , you have taught me so much , just found out the other day my son age 17 has eds , took forever to figure it out , you are making a huge difference hun thank you for sharing your life and awareness
Hi Cheyenne, I’m so sorry all of this is going on with your Blood Pressure. With me it’s the opposite, mine is so high I was hospitalized around Christmas because they couldn’t get it to come down. It was 198/125., and I was on medication for my blood pressure issues. Now they can’t find a medication that I’m not allergic to. It’s scary for me because I have vEDS, with 2 Aneurysms in my Brain and they found that my Aorta by my heart is starting to dilate. So now I’m terrified, and afraid to go to sleep. The other thing is because it’s so high I’m having panic attacks, even in my sleep, and horrible anxiety. My doctor just told me “Well go find a Cardiologist “, not so easy to do. I had one and then she said my health scared her and she didn’t know what to do and that I needed to find another PCP. I’m am dislocating more too, it’s all just too much. I’ve already had 3 strokes.
So sorry for going on about myself, I guess that’s what happens when you have no one. I lost my mom when she was only 38 yrs old from cancer, my brother and my beautiful grandma.
Anyway, please keep your spirits up, you always do, you are so strong. I’m so happy you have all the love you do around you. I’ll be praying for you…always. ✨💫🦋
You too stay strong 🤗
Glad to see you’re back to posting. I can see you’ve been juggling a lot these past few weeks. Thank you for taking the time to teach us what to look for, what questions to ask, and for explaining connections the way you do. Watching your video today was a bright spot in my day. I love how Teddy rests his head on you. What a cuddle bug! ☺️
Thank you, Cheyenne!
You are the most educated patient I have ever seen. Pretty amazing. Hope you get to the bottom of some of this, much respect to you 💪
Love your videos 🥰🥰 would also just like to say hi to everyone on here !! I have Ehlers-danlos syndrome, POTS, MCAS, Gastroparesis and more ! We have no EDS specialists in Ireland so I set up my RUclips channel Lisa's zebra life to raise awareness and spread a bit of joy and positive vibes! It would mean the absolute world to me if any of you would subscribe!!! All my love, Lisa xxxxx
Prayers for you Cheyanne!
I am praying for you and your family. You are looking better. I love that Teddy lays with you.
Growing pains is a nice way to phrase your pharmacy issues... I miss Kevin too.
That man was a godsend. I swear…every day of my life since he left, I’m like, “I miss Kevin.” 😂
I have MCAS and I’ve don’t have a dr that really knows how to treat me. He’s an allergist and is aware of MCAS, but basically I’m my own dr. Do all my research off the internet abs your channel has been so helpful for me. I know you’re a patient of Dr Afrin. Do you know what he feels about people with MCAS and the Covid vaccine? Are people with MCAS able to receive the vaccine or should we not?
Hi, just saw your post and the title really got my attention. Every time my daughter told someone she was allergic to LR they questioned her. Now I think we know the reason. So, thank you for the post, and now I will call her home health care to find out who processes them. She also has MCAS and cannot get the vaccine, yup allergic to one of the ingredients so, I feel your pain with these maskless sneezing coughing ding dongs
I'm so sorry you're experiencing all this
As a side note, your pink mask looks very pretty on you, especially with that pink top too!
Teddy is so sweet how he is laying on your stomach
I had the very same thought! So pretty! So sweet!
I’m so glad you are getting everything all sorted out! It would be great if you can get to point that you don’t need steroids daily as their side effects are horrendous long term. Despite many tries we’ve not gotten my adtenals going again. I too had a long time tpn pharmacist leave suddenly after making my TPN over 15 years. He just knew me well and had an incredible memory. Unfortunately, all the little things about what I could and couldn’t tolerate were not in their written notes at the pharmacy and its made the switch extremely difficult ! I’m now keeping close track of those things, but I know how frustrating that is!
I know about skin issue's. I feel for you.In 2016 I got an ostomy lost my bladder. My skin around my stoma,is alway's very sore.I have skin burn's all the time.I also have a true latex allergy blood test confirmed it. You are in my thought's and prayer's. I do hope thing's get better. You are a very strong person your amazing. 🌈🌈🦋🦋🌈🌈🦋🦋❤💚💜💙💛
I feel for you. I was just on the phone for the last hour trying to find one of my prescriptions made by a specific manufacturer. Apparently they are all out because after trying 9 different pharmacies I found that none of them had any and none of them could order any. Most of them carried a brand that I could not find any kind of an inactive ingredient list on, but one did carry a third brand that I found a list for and all of their inactive ingredients were ones I had taken before with no issues. I was literally in tears trying to figure it out.
I'm sorry you're continuing to rack up issues, I hope they get to the bottom of your heart issues! 💕
Love your dress
Cheyanne,you have a beautiful complexion
Can you please use closed captions
You can go to settings in your phone and turn them on. It’s usually in the accessibly section.
Just tap the video and then the little cc in the upper right hand corner. It’ll turn captions on.
I wash only thinking the other day you not produced a video in a while. I wish some of your doctors in the uk actually listen to you and not dismiss everything and clump medical issues to one umbrella term ie back pain and knees and hip pain is due to weight not actually something or depression causes all pain
I had that same exact monitor! My doctor was so confused because I had a “9 beat moment” that didn’t make any sense and told him nothing 😂
How do you know every little thing they give you and do to you etc. I can barely remember what my doc tells me when I go for basic blood work etc.
Because you mentioned reacting to IV bags in another video I was able to figure out that I was also reacting to IV bags
Do you have pots
Yes yes she does
Hi 🥰🥰! I have Ehlers-danlos syndrome, POTS, MCAS, Gastroparesis and more ! We have no EDS specialists in Ireland so I set up my RUclips channel Lisa's zebra life to raise awareness and spread a bit of joy and positive vibes! It would mean the absolute world to me if any of you would subscribe!!! All my love, Lisa xxxxx
I’m so sorry girl 💕😢 I’m so sick of learning the new things that I’m allergic to... like what are we to do when we can’t even get the vax without a humongous risk..?
Your doggie is cute
Dose it hurt
Yet again I don’t know what to say 😒❤️🇬🇧
Adhesive makes my skin blister like a burn. Its awful. Of course I was fine for years, then one day it was like my skin was over it.
She doing well
👸👸👸👸🍀🍀🌹🌹
Not everyone who coughs has Covid..
That’s true but when you have a chronic illness especially one that’s complicated like hers you can’t help but be paranoid