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Sending well wishes. Iâm just watching you knit as I recently tried and failed miserably. There is definitely a skill and you have it. You are a strong woman. Hugsâ€ïž
I ordered two of your books. I want to share with my grandchildren. You are amazing!
Hope your pain improves. I can't believe how strong you are to not take pain medication after surgery. Bless you đ
Wishing you the very best and that good pain relief will be found.
I love the book and the tree is gorgeous!!! Its always a blessing when our mast cells cooperate so we can have a little bit of normalcy! The adhesive on the patches tore my skin apart. The part of the patch with the medication on it did not bother my skin at all so what they had us do was peel the medicated part of the patch off of the adhesive prt and put it on using hypafix, iv3000 or tegaderm. They are heat sensitive so you donât want to put it someplace that gets too cold or too hot and be very careful if you develop a fever you might get way too much. If you do you have a fever however you can cover half of the patch up with the backing you peel off before putting it on. Do you guys have any kind of ornament for the tree to celebrate you being married? A couple of little lovebirds would go perfect! Have a wonderful weekend!
Your book sounds amazing! Love the video. Sorry about the new fractures. I hope the pain patches work.
Well done Cheyanne. I just bought your book for the kids of my friends. My kids learned by seeing what I have been through but Iâm lucky enough to have friends who want their young kids to understand too, especially as they are just starting school. I hope it helps them meet other kids with struggles. I have publishing ambitions myself but I always struggle with constant fatigue, other nasty symptoms and constant hospital visits. As someone also has chronic illness, you encourage me to keep trying. Well done to you for your achievements đ
Hi from the uk đŹđ§ đđ»ââïž - you are a true warrior xoxo you inspire me every day to keep on going so thank you đđ»
I have taken Belbuca for a few years now. I did fine with the adhesives, but they donât come in as strong a dose as the oral patch... maybe they can double them up Iâm not sure.
But please- if you get the oral do what no one told me- put them under your tongue and not inside your cheek where they are much more likely to hang out and leave residue on your teeth. They should dissolve within an hour. After that, please PLEASE brush your teeth, or at least wipe them down really well. Right before I started the oral ones I just happened to have a yearly dentist appointment and I just had 2 minor cavities. They were fixed and on with my life. 1 hear later I felt some really odd âholesâ in my very back molars, on my gumline.. right next to where I put the patches. I think that minty flavor (which really gags me after taking it so l on now) has some sugar or something in it. Unfortunately upon examination ALL BUT 2 OF MY TEETH were rotting to some degree. It would take $20k of dental work I canât remotely afford to save my teeth, and close to that for full-mouth implants. Basically just been dealing with the pain and decay since then... donât really know what to do, our dental insurance isnât any use for anything that isnât minor. Kinda just expecting to die before I have to really deal with it....
I just love you and your family ! I have medical issues... not like yours.. but together we trudge along with side effects, trials , tests, medications and life. â€ïž
Make sure you use a little bit of fishing line to tie to tree to the wall just in case the cat jumps in it.
Hi Cheyenne đ€. So glad you had a great Thanksgiving and your mast cells have improved a bit. Congratulations to you and your husband on your recent nuptials â€. You guys make such a cute couple
Love your videos can't wait to order your book!
You're in my prayers, thoughts and heart †℠đ you are a wonderful woman who has a great heart and soul bless you dearly â€
Hope you're doing well this holiday season! đ đ€¶đ
I love your courage...I wish I could talk to you about after surgery care for people with special needs...my son is three with autism (I know that is completely different from ur situation) but I feel u have unique knowledge of after surgery care that many of us don't have. He is having a tonsillectomy at our local Children's and to say I am nervous is an understatement...stay awesome and stay informative đ
What an amazing book! I love it!
Well done with your book đ
hope you have a good Christmas!!!
I had butrans patches. But I got very irritated skin and even burn blisters. So then I got the fentanyl patches and those worked great.
I am on butrans patch 5 7days a week it has helped alot for my pain the only thing is the first week it made me very nuaseus until my body got used to it. The patch site gets itchy but not that bad. My mast cell has been k on it. It can make your mouth dry. But it has helped my pain so much.
Aww hun sorry to hear that
Hi, Cheyanne! Greetings from Berkeley.
What a great idea for a book. And I hope u have a great Thanksgiving! Lovd ur channel
Super videođâ€â€đđđđ°
Have you ever tried/heard of Nucynta? It has been such a great pain med for me!
I love Nucynta, itâs so expensive ($1200.00 a month my insurance pays for it) but my pain is only about a 3-5 but without it my pain levels are in excess of 8! No side effects & 95% of people will not go through withdrawals when they quit taking it! Iâve been on it 3 years now..
@@shelley6746 YES! I don't understand why it isn't used more! I used it for years too...until I no longer had somebody to prescribe it for me. Never withdrawled, never felt high on it, nothing but good to say about it. It was worth the money to me...i paid out of pocket, I think it was quite a bit cheaper than that for me.
What a bummer about those new fractures ... not the news you wanted to hear. Glad to hear the pain patches are helping. Your Christmas tree is so cute! I have a question for you. Once the vaccine for COVID is available, will you consider getting it? Or are vaccinations something that could trigger a mast cell reaction?
Wow
As weird as it might sound, you mentioning all those pain meds reminded me of my problems. Is there a chance for some private conversation about some things that make me suspect, maybe some of my problems over the last years are also due to a mast cell abnormality. I also have two EDS mutations not specified to me yet, because the genetics doc is still writing the letter but was kind enough to call me and inform me that they found something.
I know, it is not your job to diagnose, I just feel like talking and sharing some experiences with someone having similar issues. Do you have any suggestion on how to write privately? Or do you have any suggestions for forums or other ways to find people in similar situations.
How are you doing ???