Tips and tricks that help me going!
Biggest alteration in my daily life after Pemphigus vulgaris that affected more were the basic necessities. The items added down are ones recommended by my doctor and some products that are personally helping me till date.
- How do I protect my skin from friction during open wound? : While sitting on the chair and while sleeping, I use under pad sheets (only change is use the plastic side of the pad). Yes, they produce heat but they are best for frictionless and better than cloth rubbing on the wound. It is impossible to carry ourselves without FRICTION.
- What clothes can be worn? : I’ve been using hospital gowns at home, front opening as they will not affect my under arm (axila) and bigger the size bigger the comfort as they don’t disturb with the movements. For hospital visits cotton dresses preferably front opening and bigger in size than normal.
- What helped with dressing the wound and helped heal them better? : Bactigras has been helping me from the start, from the day of my hospitalisation where I had 90% of skin erosion. As they have the ability to stick to the wound with the medicine, they protect it from infections or external environmental dust.
- What is the primary dressing material that is needed? : in my words never compromise SALINE WATER BATH, after shower it’s highly recommended to use saline water; number of bottles of your choice. Pour them on open wounds to keep them clean and to maintain sanitation.
- Recommended body wash and foamer: initially i was using cetaphil body wash (as my skin was very sensitive and had many open lesions) and now Palmolive coconut body wash (*of my choice as I’ve been using it for ages now). Using loofah you can create foam to use it on your body.
- What kind of foot wears are best? : when it comes to weight bearing areas and friction prone areas, feet plays the key role so we need to be careful . In case of wounds and blisters once use hotel slippers are preferred or any slippers made out of cloth that is soft and bigger. When it comes to general walking and protection I would prefer crocs bigger in size.
- How is the scalp and hair maintenance? : one of the most difficult places to be treated is hair and scalp for Pemphigus vulgaris so highly recommended to have short hair as much as possible and when it comes to scalp my doctor recommended ketoconazole shampoo keraglo-AD. Hair wash on alternative days.
- How do you protect your oral health? : using baby products ie. Using baby tooth brushes because they’re extra soft for gum and baby toothpaste.
- How did you raise your protein levels? Any protein powder that was given for you? : Yes, I was given protein powder Hinex and was advised to drink it 3 times a day mixing in warm water. My protein levels were so down that hit 2.3 (normal 6-8) so to bring it up I was given bottles of albumin and plasma protein transfusion.
- THINGS NEEDED TO BE AVOIDED!!!
- Avoid ground areas
- Avoid wearing fit clothes and materials that could irritate your skin.
- Avoid spicy and avoid adding garlic and onions in foods
- Avoid allergy foods and processed foods
- Avoid sugar as they could promote itching
- AVOID VISITORS please make your loved ones to understand that it could be ill for your health
- Avoid perfume or scented candles they can irritate the skin
- Avoid wearing tight under garments
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