Wish me luck RDP fam!

[Joe mama]

Never even heard of this. I pray this works out great for you. As all have said your one of the good ones on here and we all are hoping for the best and a fast recovery.

 

[zhandfull]

Hope this works for you.

 

[DB / HAV]

We have never met, I love your posts and positive attitude. Please know you have a lot of people praying for you and a lot of people that will help you with anything. . Just let us know.

 

[buck35]

Best wishes young lady, doing infusion myself.

 

[28Eliminator]

Wow that doesn’t look like any fun at all.. hope it works!! Sending good vibes your way!!

 

[sgtskidmark]

Prayers your way, please get better!

 

[Socalx09]

Just wanted to do a quick update because I can barely keep my eyes open. No reactions besides sleeping and being very fatigue. Finished on time and now home about to pass out.

Thank you all so much for your kind words. I’m overwhelmed with the messages. I will read each message when I have more energy.

 

[HTTP404]

@Socalx09 My wife has been getting that infusion for about 5 years. If you have any questions send an IM.

 

[Lucky Larry]

SoCal,

You come across as a brave, tough girl & we also enjoy your posts. Never heard of this ~ what you learn on RDP. That looks so painful, I can’t imagine every time you wash your face or your hair ~ ouch. Praying that these treatments work for you with no side effects. Wishing you the best & hope you get a river trip in.

“Mrs.”

 

[Carlos90041]

I’m sorry you have to go thru this. I hope this treatment provides you with relief and puts you on the path to a complete and speedy recovery.

 

[Uncle Dave]

OUCH. sending positive healing vibes.

Keep fighting!

 

[monkeyswrench]

@Socalx09 , whenever I read posts, I usually have an image of the person. Some here, myself included, are kind of like the crotchety old guy from "Up"...the "stay off my lawn" types. Others are goofballs, some are absolute geniuses. You however, are more of the bright and shiny, energetic "youth". You've shared with us some of your battles, both of family and your own, and you've met them with both strength and a positive attitude. Your actions and efforts are highly commendable, and we should all take notice.

Hopefully you can get some rest, and the medicine can do some work. I know what a drag it is to miss out on the lake or river...but sometimes different things come into play. The main thing is to get better.

There are positive thoughts and prayers coming from people far and wide.

 

[Long Way Home]

The longer you hang in there, the greater the chance that something will happen in your favor. No matter how hard it seems, the longer you persist, the more likely your success. You can’t quit or give up before you get to the river..

 

[Ducksquasher]

God Bless You! Prayers!

 

[FCT]

wishing you nothing but the best. I hope it works and you’re able to be pain free and healthy

 

[dave29]

I'll say a prayer fpr you. Hope is a wonderful thing. You must keep it foremost in your battle. Looking forward to hearing from you after the infusions are completed.
God bless.

 

[racektm]

Sending positive thoughts for a speedy recovery.

 

[Dan Lorenze]

Wishing you good health... I'm sorry you have to go through this. Keep us posted

 

[Music to my Ears]

Wishing you a speedy and complete recovery. We need your positive spirit around here as soon as you’re feeling better.

 

[MPHSystems]

I have no idea what any of those big words or acronyms mean but it looks horrible and I not only wish you “good luck” but I say a prayer for your too! (No extra charge).

 

[Warlock1]

As a person that also has health issues, I feel for you and will say a prayer for healing.

 

[OCMerrill]

Hang in there as relief is on the way. You will be back at the river enjoying as before.

 

[Socalx09]

All your positive and loving words brought tears to my eyes. There are times I have broke. down, but now I will always go back to this thread and re read everyone’s words to keep me going. It was overwhelming to read all the messages. I never really thought after joining this site a few years ago, I would gain a family I mostly never met. Truly feel very blessed to have all of you on this site. I really miss positing my river weekend photos and sharing the good times. I will hopefully have a thread this weekend about my trip as modify as I can make it. I have approval to go as long as I feel well enough and not to get in the lake. The weather looks like I can spread a few hours a day out there. I would love to join the regatta and alley party, but with being this compromised, large crowds aren’t a great idea.

The only side effect I have is being drowsy. I slept most of the day. I am feeling good besides the pain of the disease. I may be up all night because I just rested all day. Felt like I was on NyQuil all day. I have one more infusion to do on the 26th and hoping the blisters will stop by then, my dermatologist thinks I should see healing by October. Hopefully remission by the holidays.

(Some background on what happened, long read)
I have never heard of this disease and it all started from a cat scratch on my eye in late may. The dermatologist didn’t figure it out until the end of July because we thought it was just an severe eye infection. I had a dry itchy scalp and what they thought was oral thrush in July. So initially I was being treated for a fungal infection. A few fluid blisters appeared on my back in July so she did a punch biopsy. A week later, she called me saying she had good news that they figured out what was really going on and said “pemphigus vulgaris” I literally said that sounded like a Harry Potter spell. They put me on 80mg of prednisone and I had to do a bunch of blood work and tests to make sure I could do Cellcept or rituxan. I googled the images and saw how people had no skin on their backs, etc. but that wasn’t what I looked like. Well, a week later, it started to spread. It was like a switch. My back developed 30+ blisters and my chest and stomach have about 15. My face started to blister. I took a shower and saw lots of hair on the shower tile. My scalp started to blister and turn raw. I had an appointment with my dermatologist in a few days and she was shocked on how different I looked.

It takes me a lot of get ready in the morning and to go to bed. My fiancé helps with the steroid creams on my body and scalp with Vaseline. Then I have to apply xerofoam with dressing wrapped around me before bed so I don’t develop an infection and so that my shirt doesn’t stick to my wounds. It’s treated similar to a burn victim. I have a lot of patience and I rarely ever just go off. 80mg of prednisone daily - I just rage.
My fiancé is a saint. He just lets me have my angry moment and moves on. He can’t even really hug me. He will help wash my hair with a roadrunner cup. Im very grateful to have him throughout all this. He’s also been helping with grandma. I’m really hoping I look normal by my wedding in April.

I heard a quote from America’s got talent from one of the contestants battling terminal cancer: it stuck with me. And I try to live by it.

“You can’t wait for life not to be hard anymore to decide to be happy.”

 

[LHC Kirby]

Adding you to my prayer list. I think with the power of RDP prayers… you will be looking great for your wedding.

 

[beaverretriever]

Just wanted to do a quick update because I can barely keep my eyes open. No reactions besides sleeping and being very fatigue. Finished on time and now home about to pass out.

Thank you all so much for your kind words. I’m overwhelmed with the messages. I will read each message when I have more energy.

Probably good you are sleeping lots. Rest is definitely going to help. Get well soon.

 

[Hardly Satisfied]

Best Wishes

 

[Socalx09]

well we learned quickly that being on the boat with the wind would hurt. I drove the car and just met up at the bars. Made it to topock and had one margarita which I shouldn’t have, but f it. It tasted real good!

Saturday- I drove down to the springs and got to actually go on the boat! I faced backwards and we cruised over to 3 dunes. Honestly, the boat ride was everything I needed. Just hanging out on the boat for a few hours was amazing. I felt “normal”
My dad is having a great 60th bday trip. I’m glad I could be there for some of it. I think he’s enjoying not driving his boat and drinking haha.

Here’s some pictures of my weekend. Didn’t take a lot as I was driving around, napping or trying to stay in the shade. I have a full steroid “moon face” going on. Prednisone has added weight quickly despite me not eating carbs.

Got to meet
@wash11 yesterday and get our 1/2 beef delivery! Thank you so much!

Today - I decided to stay in and watch movies since I’m extremely tired. I am so glad I made the trip despite it being not my usual program. A change of scenery has helped my mental state a lot.

Crew is here!

 

[monkeyswrench]

Just the smell of the salt cedars and the water...mixed with a little exhaust...can change the outlook! Glad things are going well for your Dad's B-day as well.

 

[J&k beer can]

You are a 110% trooper..

Glad you got to go out and enjoy the weekend and get some boatn in..

Did you get the shocks back for the sxs?

 

[wash11]

Chanel, I had no idea you guys have been going through this!

Communications through this 1/2 beef order were pleasant and upbeat as usual. At one point you gave me Roberts cell # with a simple, "I'm starting treatments this week and won't be available." I would have never guessed.

To top it off, there was a hiccup in the cut order for the butcher and your fiancé couldn't have been more understanding or gracious about it. You guys are the strength and positivity that makes the world go around.

 

[Socalx09]

Well things turned a bit south Monday morning. I was in a lot more pain and a lot more blisters showed up. A mini flare up after a rituxan infusion can happen so I thought it was that. I told my doctor I wasn’t sleeping well and that I was really struggling. My scalp got worse and so did my back. We got some scissors and chopped off most of my long hair to a length that that wasn’t heavy anymore. I’m pretty sure I won’t have hair soon as it’s just falling out. My dermatologist told me not to go the ER yet and she would pre admit me on Tuesday, but needed time to set it up.

I get the call to go to the ER on Tuesday night, I walked in and the staff was expecting me. They took me straight back and I waited with some pain meds until a room was ready. My dermatologist knew the ER wouldn’t know what to do with me so she set it all up with instructions on how to take care of me. She was right, the nurses and doctors didn’t know about the disease and an internal medicine specialist had to come down to explain I was starting IVIG that night in a few hours for 5 nights. The disease has spread and they weren’t going to wait for the rituxan infusion to start working. So I started IVIG at midnight for 5 nights. The infusions took 5 hours except one night took 11 hours because I had a reaction of a migraine and nausea so they had to slow the drip down all the way. The kaiser specialists and nurses were amazing. My fiancé got the staff Crumbl cookies one day because they really went out of their way to make me as comfortable as I could be. I was hesitant to go to the hospital, but it was the best thing I could have done. I haven’t slept that well in months. I really needed it. IVIG infusions were harder on me then the rituxan one I had.

I did ask if I made it worse because of the weekend and they explained that the blisters I was having have been in the making for at least a week. So they are hoping the IVIG stops the next round of blisters coming. They were very confident with the rituxan and IVIG infusions combined, I would see blister control results in two weeks. My second rituxan infusion is pushed back a few weeks because my liver values were slightly elevated so my body needs a break.

Took this picture on my way out today with my RDP hat. Happy to be back at home, but do miss the pain management control I had at the hospital.

 

[Socalx09]

Chanel, I had no idea you guys have been going through this!

Communications through this 1/2 beef order were pleasant and upbeat as usual. At one point you gave me Roberts cell # with a simple, "I'm starting treatments this week and won't be available." I would have never guessed.

To top it off, there was a hiccup in the cut order for the butcher and your fiancé couldn't have been more understanding or gracious about it. You guys are the strength and positivity that makes the world go around.

Thank you so much for your kind words! Really tried to keep this low key as I was really struggling with what was going on with my body. Robert had to take over the beef order because I didn’t know if I would have cell service at the hospital.

I can’t wait to start enjoying this batch of beef! You guys were so nice on Saturday! Very glad to have met you both this time. Going to make Mississippi pot roast soon! My grandma absolutely loves the ground beef! She ran out in August, and hated using the store ground beef for the time being!

 

[Socalx09]

You are a 110% trooper..

Glad you got to go out and enjoy the weekend and get some boatn in..

Did you get the shocks back for the sxs?

Thank you!

Yes we did. Such a better set up! Thanks again so much for delivering the shocks. Hope your puppy is doing well!

 

[J&k beer can]

Thank you!

Yes we did. Such a better set up! Thanks again so much for delivering the shocks. Hope your puppy is doing well!

Cool.
Need to have our shocks done.
I hear it's a big improvement over stock...

Doggy is good..lil monster growing fast. Loves the pool the lake n boating. Doesn't care for the car ride to get there..

 

[RiverDiva]

Wow I hadn’t opened this thread before. Your strength and positive attitude are incredible. Have you ever heard of the Medical Medium? He has some amazing recipes, meditations and books on healing yourself from within. There is a ton of free content on his website. He’s the one that started the celery juice craze. His recipes have helped me and others I know over the years. Maybe you can find some help on there as well. https://www.medicalmedium.com/

 

[lenmann]

Nothing but positive thoughts and wishes as you make this journey. Hang tough and take it one step at a time, soon the worst will be behind you.

 

[musicFunsun]

I think the RDP force is with you!! Hope you’re better, soon.

 

[sirbob]

In a world full of “whoa is me” your outlook is very inspirational.

While I know it’s impossible to always have a cheery outlook, keeping at least a neutral frame of mind with the mind set of just putting one foot in front of the other is the key. Strength to you and your family.

Thank you for sharing your story.

 

[Socalx09]

Wow I hadn’t opened this thread before. Your strength and positive attitude are incredible. Have you ever heard of the Medical Medium? He has some amazing recipes, meditations and books on healing yourself from within. There is a ton of free content on his website. He’s the one that started the celery juice craze. His recipes have helped me and others I know over the years. Maybe you can find some help on there as well. https://www.medicalmedium.com/

Thank you so much for sharing this. I will definitely look into this. I have not heard of it. I know my doctors have mentioned diet changes can help reduce future flares once this gets under control, but haven’t got much information other then that. So this is great!

 

[Socalx09]

In a world full of “whoa is me” your outlook is very inspirational.

While I know it’s impossible to always have a cheery outlook, keeping at least a neutral frame of mind with the mind set of just putting one foot in front of the other is the key. Strength to you and your family.

Thank you for sharing your story.

I think the RDP force is with you!! Hope you’re better, soon.

Nothing but positive thoughts and wishes as you make this journey. Hang tough and take it one step at a time, soon the worst will be behind you.

Thank you! I am trying to be as positive as I can. There are some very hard moments when I feel done. But, I find something to distract my mind whether it’s puppy videos or old photos, etc. got to keep positive or it will crush you.

 

[Socalx09]

Cool.
Need to have our shocks done.
I hear it's a big improvement over stock...

Doggy is good..lil monster growing fast. Loves the pool the lake n boating. Doesn't care for the car ride to get there..
View attachment 1158039

Oh I love this picture! Such a happy pup!!! This is exactly what I look for on my hard days!

Huge improvement especially if you added any weight to your sxs. The ride height is definitely an improvement with the shocks. Hoping I’ll be better by thanksgiving to truly feel how the new shocks are.

 

[stephenkatsea]

Socalx09 - You’re truly amazing.

 

[gqchris]

Socalx09 - You’re truly amazing.

You really are! Your fiancee is one lucky guy!

You are so selfless taking care of your Grandma and then your Dad and his challenges, it pains me to see you going thru something so rare and painful.

It is 2am, I am up because my one year old is kicking me in bed and being the lil monster that she is. Lol. I have been having a back pain flare up the last month and feeling pretty helpless with helping my family and trying to keep day to day operations going. Then my bike gets stolen (we all know that thread!) lol

I opened this thread and realized how lucky I am and that everyone fights their own battles, some more challenging.

You got this! Prayers from my family as well and get better soon to enjoy this October weather!

 

[Socalx09]

You really are! Your fiancee is one lucky guy!

You are so selfless taking care of your Grandma and then your Dad and his challenges, it pains me to see you going thru something so rare and painful.

It is 2am, I am up because my one year old is kicking me in bed and being the lil monster that she is. Lol. I have been having a back pain flare up the last month and feeling pretty helpless with helping my family and trying to keep day to day operations going. Then my bike gets stolen (we all know that thread!) lol

I opened this thread and realized how lucky I am and that everyone fights their own battles, some more challenging.

You got this! Prayers from my family as well and get better soon to enjoy this October weather!

Meant to reply to this sooner. Really appreciate the kind words. I would definitely say I got lucky with my fiancé. You really find out a lot about a person when you are dealing with an illness. Really since July, holding my hand was as close as he could get to me. The nightly bandaid and dressing changes and all the appointments. I am so use to bring the caretaker that I tried to do it on my own, and learned I couldn’t. I never thought I’d find someone who would do the same for me. Not so sure this is a positive, or just sad…but everyone has realized that caretaking grandma isn’t as easy as they thought it would be in the days I can’t be with her. I think they thought I just watched tv with her all day. I haven’t heard one word that I don’t have a “real” job anymore. So that’s been nice lol!

I am so sorry to hear about your back problems. I can only imagine how debilitating that is for you to deal with. I read about it in your other thread.(bike thread) I hope you are able to find some relief soon.

You are 100% on everyone has problems whether we see it or not. Everyone is struggling with something.

I have my next Rituxan infusion on Monday. My doctor also ordered me monthly IVIG treatments until this is under control. My back sores are closing up and I haven’t had any new blisters on my body in a week. My scalp and face haven’t improved yet, but I think the IVIG has kicked in and my body is responding well. I would say 70% of my back is healed. I’m so grateful that finally something appears to be taming this stupid disease lol!

 

[Socalx09]

IVIG round two! This is my 6th IVIG infusion in the last month. I have another one tomorrow and Friday. It takes about 6/7 hours for me. I had two rituxan infusions in the last 35 days so a total of 8 infusions! I have had no new blisters for 2/3 weeks now. I had over 80+ open sores/blisters on my back alone when I hospitalized. I would say 95% of my back is healed to light scarring. I only have a few left to heal in my neck area which keep getting irritated by my shirts. My stomach and chest are mostly healed as well. Still not healing very fast on my face or scalp. But, the yellow crusting has slowly starting to fall off around the edges which I’m hoping this next round of IVIG targets.

I actually can sleep in a bed. I no longer wake up with a bloody shirt and pillow. The sores would constantly open as the skin is too sensitive to stay intact with the disease was flaring. You cannot use regular bandaids because it will keep tearing the skin around it and make a bigger sore. The special bandaids were pricey. I’m glad we don’t have to pay for those anymore. When I was hospitalized, I honestly didn’t see a light when they told me 10-14 days and I would feel better. I just didn’t believe it after being in pain like that for the summer. IVIG is pretty amazing treatment with how fast the body responds. I was able to take a real shower this week. I haven’t stood in a shower since June. I had to use a roadrunner cup to wash my hair and soak in a tub because the pressure from the shower head felt like bbs being shot at me and it would just reopen my sores and hurt my scalp. The little things in life you take for granted.

I’m just so happy that I can move around without much pain and not have to think about every little thing I do. I feel very blessed right now.

 

[HNL2LHC]

Such great news that you are progressing in the right direction. You take care and if anything is needed just post up!!!

 

[DB / HAV]

This is really awesome to hear. I love your positive outlook. As HNL2LHC said, if you need anything, let us know. Please keep posting your progress.

 

[FreeBird236]

Very happy for you, keep up the good work.

 

[angiebaby]

I’m happy to hear you are seeing an improvement!

 

[monkeyswrench]

There was a thread posted today, "Things That Made You Smile Today"...

@Socalx09 , this is one of them! I don't know much about this infliction that has turned your life upside-down, but I can identify with the major things that most of us take for granted. We all seem to have a bit of stubbornness...it makes us who we are. That same trait also makes it hard when asking for help, any help. Just getting dressed on our own, showering or changing bandages...feels like such a major win. It really is, when you've struggled to previous. Those major wins make big changes in how we feel. How we feel, makes a huge difference in how we approach the next day.
I'm very happy for you!

(Don't know your skin type or how the blisters/scarring is, but you may ask the doctor if "triple antibiotics" should be used, or what sunblock. I had to use a ton on my face from lacerations, but kept the scarring down...but my skin is kinda goofy being a "whitesican".)