How Scleroderma Can Change A Person's Looks!!
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- Опубликовано: 12 апр 2018
- Living With Scleroderma | "How Scleroderma Can Change A Person's Looks!!"
How Death Saved My Life, my book about my recovery from two simultaneous potentially fatal illnesses - scleroderma and late-stage cancer - is available on Amazon at amzn.to/2uvr1Vi
I'm really putting myself out there with this one. I am going to show you exactly what I went through as I LIVED with this illness progressing in my body. This walk down memory lane has reminded me of the treacherous terrain I walked to get here. My purpose is always to encourage hope, and inspire you to find the strength already in you to persevere.
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THIS EPISODE'S LINKS:
Prayer for Healing: • Guided Christian Medit...
MOUTH EXERCISES
1. www.ncbi.nlm.nih.gov/pmc/arti...
2. www.inspire.com/groups/sclero...
3. healthunlocked.com/sruk/posts...
HAIR LOSS & SCLERODERMA:
1. www.inspire.com/groups/sclero...
2. www.vincihairclinic.com/hair-...
3. sclerodermanews.com/blog/2016...
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FOR YOUR VIEWING PLEASURE
Traveling Easier With Disability video: • Living With Scleroderm...
Weight Management video: • Living With Scleroderm...
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STAY CONNECTED!
FACEBOOK: rainblowinbloom
INSTAGRAM: @rainbowinbloom
SNAPCHAT: www.snapchat.com/add/bluesmyle
INSPIRE: www.inspire.com Search ScleroGirl
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CONTACT ME!
E-MAIL: rainbowinbloom@gmail.com
#beauty #chronicillness #sclerodermasymptoms
Thank you for sharing this. I didn't know these changes were normal! I have felt so alone in this struggle. I have all of these changes...it has been so hard. Thanks again. ❤
Hi Jessica. I’ve had all those changes also
I'm 19 yrs old Sceleroderma patient and recently I have depression and I feel like the pain will never end I feel pity for myself and I feel really scared to face my death.Thank you for giving me strength from this video❤
hello my love. So happy you found some comfort from this video. Don't give up! I know it's so hard and confusing. You feel lost in the abyss. But allow yourself time to adjust. Give yourself other things to focus on - make plans, go out when you can, just to be outside, work on a hobby, get dressed up sometimes...
Hey baby. There is a way to reverse every disease. God said so. Follow this #1 nattokinase reduces fibrin build up. # 2 chanca piedra herb breaks down calcium build up. #3 vitamin K2, magnesuim and vitamin E. Removes calcium out the arteries and to the bones where it should go. #4 chlorophyll and Nac removes heavy metals and toxins out the body so your liver can work properly and clean the blood. #5 serrapeptase will help with inflammation and pain. #6 is the most important. You must go alkaline vegan ( fruit and veggies only). You must stop using and eating all toxins. No sugar, no bread no white flour, no dairy , no eat, no meat, no soy. #7 chinese medicine has reversed this find a good ole chinese doctor or go to Dr. Robert morse office in florida. Find him on youtube. In the beginning there was the garden where sickness and disease did not exist. If you want to heal go back to the garden. Love you all
tawana wilder I'm not sure if I have this yet but I'm positive for the blood test. I definitely agree with you. It took me awhile to learn this. I was exhausted for a few years and vitamin C IV's (combined with other vitamins and micro nutrients) helped tons. I think what you said and also bringing up the immune system helps all autoimmune diseases.
Thank you for sharing. I know I’m not alone. I was diagnosed : 3 yrs ago with diffuse systemic scleroderma and I have had all the changes you described.
You're welcome Cheryl 😊
Wow. You have gone thought so much. I did not know it could be so bad. Hugs…🤗🤗🤗🌸🌸
God bless you..you are a beautiful person..my son was just diagnosed...Thank you for being an inspiration❤
Hi Marianne! So sorry to hear about your son. It takes a while to adjust to a life with scleroderma for the person and the family as I'm sure you know. But hope is on the horizon! I talk about the TRAIL protein being researched right now at Johns Hopkins, in my latest video. Take care!
Thank you so much for this video. I was diagnosed a month ago and your positivity really helps me.
Thank you so much for the inspiring words and the truth on what to expect. Sending much love
Thank you for directing me to this video.
You look beautiful! Thank you for the video...I subscribed!
Thank you so much!! This was very helpful ❤
I stopped posting pictures of myself before I was diagnosed. Felt weird. People to this day still ask me If I had plastic surgery done since my face changed so much, everybody (that doesn't know) still thinks I went rhinoplasty.
You look beautiful by the way.
Thank you so much for sharing.. God Bless you and all of us..
💗💗💗💗 Thank you for this video
I have lots changes also thank you for sharing this I have felt so alone this struggling it's has been so difficult thank you again
I just came across this. Thank you so much for sharing. I thought I was the only one dealing with these symptoms. God bless you. I hope you are doing well.❤️
Hello Molly. Thank you for your kind words. I felt the same way. I'm doing well. Hope you are too.
Thank u so much for yo video u have built up my confidence
You look amazing BTW. Love yr spirit. I can relate but I recovered on my own too. It's such a strange condition, I couldn't accept the changes, in denial and just wanted to live my life
Very well done video. Thank you🙂
Thanks, Angela.
Thank you ♥️
thank you. i have the sclerodermea and i live in Sénégal
You are beautiful..thank you for the video! It gives me hope..I recognized almost all those symptoms in my face..just didn't realize it..but I don't seem to do as well as you..what am I doing wrong? I am almost completely house bound..but I don't really have a support system either..or any social life
Hi Linda. You're not doing anything wrong. You're seeing the result of a 10+-year journey. It took a very long time and profound, unexplainable suffering to get to this point. Check to see if the Scleroderma Foundation has a chapter in your area and if they hold meetings in person or online. You can also go to inspire.com to connect with people around the world. Definitely do everything you can to try to build connections. It's important. Best wishes to you. You can reach out at rainbowinbloom@gmail.com if you want. And I'm ScleroGirl on the inspire website.
Came here from Jordan's channel, she has the same thing. Thanks for info, this is all new to me. You and Jordan are beautiful ppl 😍
Someone I know is on a collegen diet. Kinda scary tbh
Lady mopar What do you mean you said that you are on a collegen diet ? I do know that Scleroderma is a autoimmune disease with an overproduction of collegen in the body, that's why I don't understand what kind of diet you are referring to.
@@coraburns5810 I don't know I was confused I personally don't diet one of my co-workers was on the college and diet I don't understand what that is. Because of the research I did on this subject I just found it odd. Thank you for your input I hope everything goes well
I took your advice and did my own disability paperwork and was approved.
Awesome!! Congrats!
Can I apply for temporary disability in between that can I submit an application for permanent disability ? How long did it take your disability to get accepted ?
@@rosachavez6394 Rosa I don't think you would qualify for temporary disability because this condition is considered permanent. How long it takes depends on several factors, including if there are no issues with how you completed the application and how fast your doctors submit the necessary backup documents and how fast you and/or your doctor respond to follow-up questions.
Thank you for replying and giving great information! By the way You looks so lovely.
Hi Melissa, I was diagnosed with Limited Scleroderma and Erythema Nodosum in early 2018. Occasionally, I get the purplish bruising on my legs, just below the knees and the arms. I'm taking Methotrexate so I have experienced the thinning of the hair. In 2011 I did the big chop and went natural so I loved my thick curly hair, now it's really soft, thin and curly. I've also noticed the lines on my chin. I didn't know until I saw your video that Methotrexate was a chemo drug. Would have been nice to know but, I guess.
Hi Ms. Sharon. Please read the scientific research on methotrexate. It sharply increases the risk of cancer. I didn't even take it for long. I pray for your full and complete recovery.
Hello,Ms. Sharon, I've read your message here on RUclips. I have Limited Scleroderma as well, I haven't found more ppl with the limited form of this disease.
I'd like to know what treatments do you take?
I live in Mexico city México and here doctors don't know much about this illness.
It's depressing.
❤️❤️❤️❤️
Hello. I was very moved by your book. Very taken by your fortitude. I have scleroderma and myositis. You wrote you were healed by immune therapy?.. do you mean immune suppressant medication or stem cell transplant procedure?..thnks
Hi Michael. Thanks so much for your kind words. The Hodgkins lymphoma was cured through immune therapy. But I think the reset of my immune system also helped the scleroderma problem. Well, that and the chemo...
Hello. Thank you very much for your reply!. You are a great inspiration. I purchased your book. Your courage and attitude is impressive. So glad you're doing better. I wish you wonderful health and blessings. People take their health for granted while focusing on wealth, career etc..when without health simply living day to day becomes a challenge. Thanks again
Hi, I've suscribed to your chanel. I'd like to know where do you get treatment? I'm in Mexico city México and I haven't been very lucky. I have to be like my own doctor.
Here doctors never hear, never Believe you. I'm scared of them.
I have symptoms, positive labwork but I don't have any treatment.
I feel lost honestly. I don't know if I ever have a more normal life. . .
Thank you.
Hi Lily. Location is definitely an important factor for proper treatment. I'm in the Philadelphia area so there are many options. UCLA has a Scleroderma clinic called Scleroderma Center of Excellence.
I don't know about him personally but Dr. W. Leroy Griffing is a Scleroderma specialist in Phoenix, Arizona. Go here to read reviews about him
inspire.com/groups/scleroderma-foundation/discussion/specialists-at-mayo-clinic-scottsdale-az/?t=1638563400936. You will have to create an account. This site is for Scleroderma patients.
Otherwise, if you need funding to travel to the U.S. to see a doctor you can try GoFundMe... I helped somebody raise $10,000 USD for a multiple sclerosis treatment. It can be a real option for you.
It is not unusual for doctors to be dismissive and skeptical. Don't lose heart. Just do as much research as you can because knowledge is power and it helps you when people treat you like you're lying or crazy.
I am diffuse sclerosis pt diagnosed a month ago.. I have very bad hair loss.. Plz any one can tell me what to do? I tried many recipes already.. Seroms.. Shampoos.. Henna. But nothing worked.
Hello Sara. So sorry to hear of your distress. It is a very traumatic thing to go through the changes experienced in this illness. It's so sudden and dramatic and difficult to accept and adjust to.
The first thing I want you to know is that at the beginning of your scleroderma journey things will very likely get progressively worse. That's the bad news. The good news is that your body will eventually fight back less feverishly and your symptoms will eventually show some improvement. Hair loss is a part of that. I have mentioned it in previous videos.
The problem with your hair has to do mainly with inflammation. Although decreasing blood circulation could also play a part. So those products do not address your issue. You have to decrease inflammation. Ginger, turmeric, bromelain, etc. Prednisone, on the pharmaceutical side of things, is extremely effective. You can email me at rainbowinbloom@gmail.com for more information.
Be well.
I have a line across my nose. Have you ever heard of that? I also have CVID as well.
Wow! I had to google CVID! That sounds intense too. My goodness. As far as my nose, it's evened out a lot but it's still a little lighter than everything else and there is a line but it's like an upside down v. So many weird things can happen. LOL
Rainbow In Bloom that made my heart melt with gratitude that you even googled my condition. They think I have scleroderma too. Well, you are beautiful!! Thank you so much for your reply.. I’m about to sub to you. It took me many years.. actually, it took me going to Emory to get a diagnosis. Luckily.. I do live in GA. Now I compare them all to Emory 😜 I lost a lot of trusts with doctors. But anyways, thank you so much ♥️♥️
products for skin
Hi. I think I'm only now seeing this comment! I've been meaning to do a video on products for skin other than the one I did on sunblock! Will do soon.
How did u manage it
Just kept my head down and kept looking forward. Anytime I thought about it too much I would feel completely defeated because there was nothing I could do about it.
Hello how can I contact u.
Hi. Yes. Rainbowinbloom@gmail.com
How did you reverse your scaloderma please?
Hello. It was indirect. I had cancer and the treatments for that, including chemo, a stem cell transplant and immune therapy put it in remission along with the cancer.
I had a childhood friend who had this disorder and her face in particular. This woman says her cheekbones got higher. I as a layman, don't really know a lot about scleroderma but I can't imagine her "bones" changed. I truly believed, and still do, is what was really happening was she and other sufferers was losing the fat and her skin is becoming very taut and stretched across the bones, thereby making these people look like cheekbones were getting higher!!! I don't believe it!!! Cheebones did NOT get higher!!!
The changes in appearance are caused by inflammation, which can include creating the effect of higher cheekbones. We don't mean that the bone structure changes, I did not make that claim in the video and you're not saying that your friend specifically explained it that way. It could also be phrased as "the inflammation in my face caused the round part of my cheeks to be fuller and protrude upward more" but 'my cheeks got higher' is good enough. You can see it in the picture I inserted so I don't get where the disbelief is coming from. Scleroderma is an inflammatory disease of the connective tissue. Taut, stretched skin does not create the appearance of high cheekbones, just a thinner, stiff face. By the way, if you want to be a true pal, try learning more to understanding what your "friend" is going through, instead of assuming, doubting and criticizing. People suffering need empathy.
@@RainbowInBloom I have positive ANA and have been very sick for the past year with all of the Lupus symptoms. I am currently going through more test to see which MCTD I have but my cheekbones have changed in this way as well. Now I am so worried its Scleroderma. I don't really resonate with much of the other symptoms some but more so Lupus symptoms, but my cheeks/face have changed so much. My cheekbones seem to protrude high around my ear area so much that I can't stop obsessing over it. Its on both sides but right side is worse, it looks swollen but does not feel swollen. My face is becoming asymmetrical from it. My glasses even sit crooked on my face.
What demon disliked your video???😒
meh. it's only one demon lol
@@RainbowInBloom yeah only one demon... not bad but still though😒. That's crazy. What an incredible story and awesome encouragement for folks!🤓