Lotions & Potions: What helps my dry skin, hair and lips.

I know everyone has various levels of dryness with this crazy disease so I hope this helps you like it has me!

BODY: I use Olio di Argan Shower gel with pure Argan Oil. I allow my skin to air dry and then I apply baby oil. Allowing your skin to air dry helps keep your bodies natural oils. I also alternate using baby oil (stronger) and sesame seed oil (weaker) depending on how much moisture I feel my skin needs. If I need extra moisture throughout the day I use Eucerine Cream or Cetaphil Cream. The creams last longer than a lotion on my skin. I also exfoliate as needed using the Clarisonic Plus with the body attachment.

HAIR & SCALP: I use Agadir Argan Oil shampoo and conditioner  (sulfate free). When needed I use a deep repair mask by hi.pro.pac (Moroccan mend Argan oil).

LIPS: I use Aquaphor Lip Therapy by Eucerine.  Aquaphor is my life saver!!

FACE: I wash my face with Fresh Soy Face Cleanser and I apply Murad Invisiblur Perfecting Shield SPF 30. I also stopped wearing all makeup.

EYES: Systane Ultra High Performance lubricant eye drops.

NOSE: Sterile Saline Nasal Mist or Simply Saline Nasal Mist

I have tried so many different products over the last 8 months and these products have been my best of the best. I really hope this will help you too. I hope  anyone with dry skin, eyes or nose can benefit from this post.

Sick of being sick... April 29, 2015

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Pictures of progress April 29, 2015

Please follow me on my blog at http://awindowintomyworld.weebly.com/1/post/2015/04/pictures-of-progress-april-29-2015.html

Pictures April 1, 2015

 

A close up of my spots on my left leg 

Shingles on my right cheek.

The peeling between my fingers. 

 My toenails and cuticles have gotten worse.

My left  arm. Looking good! :) 

My right arm, looking good!! Already so much better. 

My left leg. Looks so much better! 

A close up of a spot on my left lower calf. 

Here is how my face looks. You can see the Shingles on my right cheek have started to heal. Also my poor lips have gotten worse. :( 

My right foot. I used to have beautiful feet. No matter what I do I can't get rid of the exfoliating skin. I can get it all off one night and it will look just like this a few hours later. I could only imagine how bad they would be if I did nothing. Just thankful I can still walk!

My left foot. The bottom of my feet have gotten worse. It's so gross! It turns the bottom of my feet yellow. My feet have began to swell so much that I have to wear a half size larger in shoes. I also wear flats unless I have very, and I stress, very important plans. :)

Week Two on Absorica (Acutane) - March 30, 2015

Wow!! I can't believe how great my skin looks. Only two weeks on this medicine and my skin looks amazing. I have had more side effects this week then last. Unfortunately the side effects I had last week have not gone away and I've only added to the list. this week my scalp became very dry and it looks like I have dandruff. I also have extremely dry skin around my eyebrows, nose, lips and chin. I have also started to have peeling  between  the webbing of my fingers. My hands and feet have began to swell, and are painful.  Another new side effect is that I have learned if I do not eat enough food I will become very nauseous and throw up. Unfortunately, my poor toenails and lips have gotten worse. The worst side effect of all would be the shingles on my right cheek. I went to the doctor this morning to have it cultured. She said she is unsure if the shingles is actually a side effect from the medicine.  She said she thinks it's because my immune system is so low right now. 

I did received some very awesome news today. My doctor told me that I will be able to take this medicine for 6 months and try to decrease the dosage overtime. She said that we would continue at the 60 milligrams I'm on now for the next 6 months. Then I will be able to lower my dose to 40 milligrams for one month. Then lower it to 20 milligrams for one month, so on and so on. The only way that she will stop lowering the dose is if my disease comes back. She said the worst case scenario is that I would have to go back on the medicine. I am so so so happy to hear this news!!! I honestly thought I would have to be on this medicine for the full 3 years. I did not know how my body could handle such torture. I can honestly say that I would take all the side effects this medicine has given me in exchange for my disease. It is all worth it! I thank God everyday that he has blessed me with strength and healing.

Pictures March 20, 2015

I now have the first spot on my face :(

A close up of my left arm. All of the redness and irritation is gone! You can even see some of the scars have faded drastically!

A close up of my left leg, the biopsy sites have completely healed. (The two large red spots) Also look at how much better it is, the redness and irritation is all gone!

My right arm.

My left arm.

This is a picture to show you the redness that comes and goes. I pushed my thumb on my chest to show you the difference. It's so crazy how hot I  get. 

This is how I look on week one.

My poor chapped lips :(

Week One on Absorica (Acutane) - March 10, 2015

Due to the side effects of this medicine I have to be approved every month by IPledge to receive my medicine. To get started I had to have 2 negative pregnancy tests, and 2 rounds of blood work showing my organs functioning properly, both tests a month apart. I also have to answer questions online about birth control. It is very important not to get pregnant while on this medication. The birth defects are  major and severe. I was approved and my medicine was ordered and on it's way. Well if you know me then you know my luck... there was a bad snow storm up north and my medicine was stuck in it. This delayed me from starting my medicine by one week. 

I finally started my medicine on 3/12/15. I honestly had no clue how potent this medicine was. I already have experienced numerous side effects from it. I can't express how chapped my poor lips are. I have to apply chapstick every 45 minutes to an hour or they feel like they are on fire with pain. Have you ever sunburned your lips really bad? That's what it feels like. I also got a sty in my left eye on the outside corner. Not fun :-( I also became very nauseous and had to leave work a little early. (I have learned that just eating a croissant is not enough food for this medicine) My face peels around my nose and mouth, and my face is dry and itches. The strangest side effect is my skin will turn bright red as if I have a sunburn and then go away on its own hours later. Oh and I was not expecting the hot flashes, I feel like I am going through menopause really early. LOL! Thankfully I have been able to handle all of the side effects so far, I was just really shocked that I had them the first week on the medicine.

I am really excited to share that I can already see a difference in my skin. My arms are already showing improvement. It is drying the old spots out and limiting the new ones that appear. I have discovered that the disease chooses a new spot to attack. First it was my right arm, then my left arm and my scalp. My legs, feet and stomach were next. Now it is on my back. I find this disease to be very odd, I never know what to expect next. I have noticed fewer spots coming up but they are a little larger than when it first started. When everything began it looked like little bug bites, the largest would be around the size of a pencil eraser, now the largest are about the size of a dime. I have also noticed by looking at earlier pictures that the scars are slowly disappearing. This makes me so happy :) I know it's vein but I really didn't want to look like a spotted person the rest of my life. I'm really shocked that I am already seeing improvement. This is so great!! I'm not going to get my hopes up because my Dr did say it will get worse before it gets better. I guess my hopes are that because we caught it so early, maybe it will make a difference. Unfortunately most people with this disease are only diagnosed in the third stage. This is when the unique characteristics of this disease come out. I am very blessed to have been diagnosed in the first stage,  I found out this is extremely rare. My hopes through all of this is that by me sharing my story and pictures that someone else will be able to be diagnosed earlier. 

Through research I have discovered just how rare Pityriasis Rubra Pilaris really is. On one UK site it started that out of their whole population of 58 million people only 156 people have this disease. That really put it in perspective for me. I have searched the internet looking for similar numbers in the US, but I have come up empty handed. Don't worry I'm on a mission to educate the public, so what ever I find I will share. Speaking of sharing my favorite website on Pityriasis Rubra Pilaris has been http://www.prp-support.org/wp/ I am so thankful for this website! I have been able to learn so much about my disease in one place. Thank you to the person who made this site, I am very grateful! 

Pictures March 10, 2015

The little kittens I rescued on Labor Day. 

This is how it all began... little red dots on my right arm. Before I scratched them they looked like a small pimple or ant bite. (2014)

This is my left elbow, you can see the different stages and the swelling in this picture. (December 2014)

My left arm and legs after my biopsy. You can also see some of the bruises. It would itch horribly before anything ever showed up, and again immediately after the spot would appear. (January 2015)

A few days after my biopsy. Its healing great! :-) (January 2015)

Two weeks after biopsy, it's healing great except for the tape allergy. It's always something with me... lol! (February 2015)

Another picture of my leg. I've never been more thankful for the Benadryl cream. It has helped me so much! As you can tell in this picture I still scratch, but not nearly as much as I used too. (February 2015)

Unfortunately I now have it in my hair. :( I just pray I don't lose my hair.

It has also effected my poor feet and toe nails. :(

Both of my big toenails are effected. It turns your toenail yellow halfway down the nail.  Normally doesn't effect the nail bed, but mine are bruised. My doctor thinks it's because I'm on my feet all day for work. It also pulls the nail away from the nail bed, as you can see in the pic, it's already doing that too. :(

My Diagnosis: Pityriasis Rubra Pilaris

MARCH 10, 2015

My Diagnosis: Pityriasis Rubra Pilaris

I rescued these adorable little kittens from an abandoned house on Labor Day in 2014. These little babies had a severe case of ringworm along with many other issues. When I saw the first spot on my right arm I thought I contracted ringworm from the kittens. At first I only had a few spots on my right arm. Then I began to notice them on my left shin and calf. I really thought I had a bad case of ringworm. I treated them with over the counter medicine for ringworm. It continued to spread, and spread, and spread. My rash is extremely itchy, with very small circular scabs with "horns" (as they call them).


By December 2014 my rash had spread, now effecting both my arms, and legs, my stomach, neck and chest. I had gone to my doctor and she gave me a round of medicine and a steroid shot to get me well. Unfortunately that didn't work. The spots honestly looked like the chicken pocks. I began to really worry why all of the medicine was not relieving my symptoms. I was so miserable, I couldn't even concentrate because I was so itchy.... I was just plain miserable. I ended up going to the ER for help. I thought for sure they could help me on a Friday night. Well the on call doctor said I had folliculitis and gave me a shot of steroids and told me to take some Benadryl, and that I would be fine. Well unfortunately for me he was wrong. I accepted his diagnosis and went on about my life, the best I could. I started to get  really sick by the end of December. I would have night sweats, major fatigue, and fevers. I would also have what I would call hot flashes all day long, while constantly scratching so hard I would bruise and bleed. I went back to my doctor and told her all the trouble I was having and she referred me to a dermatologist.  

January 2015 came and I was still battling all of the symptoms above and I started to get even sicker. I was having dizzy spells with a very high resting heart rate (147bpm @ one appointment). I went back to my doctor and she sent me for multiple test, and to multiple specialists. I finally had my appointment with the dermatologist. She said she was unsure of what I had. She took a skin sample (a skin shaving) and sent it off for a biopsy. I need to come back in 2 weeks to get the results. During this time I was able to see the cardiologist he diagnosed me with a condition known as Vasovagal Syncope. This is what is causing my heart to beat so fast all day, the night sweats and the hot flashes. He started me on medicine and asked to see me in 3 months . I also saw the pulmonary specialist, like my doctor he did many tests; chest xray, a comprehensive breathing assessment, CT Scan of my sinuses, the whole works. The last week of January I got sick with an upper respiratory infection.

February 2015 was my month for answers!! My dermatologist gave me my test results, I have a very rare skin disease called Pityriasis Rubra Pilaris. I had never heard of this disease before. Once she told me the name I honestly just kept repeating it in my head over and over. I didn't even hear what she was telling me. I know she said I needed to start this medicine, but I had to be approved before I could take it. I will be taking Acutane, I can not get pregnant while on this medication nor 2 months after stopping use. There are many side effects and it is very bad for your liver so I have to take a blood test and pregnancy test every month before they will give me the medicine. I was sick in February with an upper respiratory infection and then the flu. I think I should now have frequent flyer miles at my doctors office. LOL :) I also went to an infectious disease doctor for help. I really don't know why I keep getting so sick. 
I honestly think at this point I'm going to run out of blood if they have me do one more blood test. LOL.

March 2015 I am supposed to start my medicine this month. I have been approved, just waiting for it to arrive. I had my last hoorah with all my friends since I'm not going to be able to drink for a very long time. I did find out that my immunoglobulin m & e are high. My pulmonologist said he wants all the test results back before he makes his diagnosis. So I will continue my day to day life :)




I will try my best to keep this site updated regularly. I hope this will help others with this disease. Never give up! All things are possible to those who trust in the Lord. Our God is an AWESOME GOD