Wish me luck RDP fam!

[wishiknew]

You are a very powerfull woman comend your strength hope you beat this soon

 

[HTTP404]

Good going girl!

Just keep doing what you are doing!

 

[DaytonaBabe]

So glad to read that you are doing so much better! Keep kicking butt, girl!

 

[Lucky Larry]

Chanel West Coast . . . Or Chanel So Cal

How are you doing? How’d you do thru the latest round? Continued prayers.

“Mrs.”

 

[Socalx09]

Chanel West Coast . . . Or Chanel So Cal

How are you doing? How’d you do thru the latest round? Continued prayers.

“Mrs.”

I have been enjoying life so much in the last few weeks, I haven’t been on much. I can’t seem to say no to any invitation out after being home bound all summer and being in pain. It’s amazing how much more you appreciate life and the little things after going through all that.

The IVIG knocks me down for a few days with migraines and fatigue. My next months round is Nov 16, 17, 18th. After about 5 days, I bounce back. My face is healing quickly! Almost all the blisters and scabs are off. I have blotchy red scaring, but they told me it would fade, plus make up. I am totally ok with that. I am out of pain and haven’t had new blisters. I am so grateful for that. My scalp is also healing, it feels soft still, but I feel like by December it will be better. I am not sure how fast my hair will grow back on the top of my head, but that’s ok.

The doctor is thinking of keeping me on monthly IVIG for year or two since the studies show after two years flare free, it may never come back. I still have two more rituxan infusions to do this year. They finally are tapering me down on prednisone. I will be down to 60mg in a few days. I was on 150mg at the hospital. Hoping my steroid round face and water weight gain will start to disappear. I already have my wedding dress.

So I am doing pretty well! Infusions days and the day after suck, but the progress is amazing once it kicks in.

Really appreciate everyone kind words and support. It helps a lot!!!


Side note- I know the girls on here will know how much this would suck. When the disease flares up, there is to be no damage to the skin. You cannot shave, pluck, wax, use any abrasive cleanser, mani, pedi, basically nothing that can injure the skin. I am not a girly-girl, but I felt like a man all summer. I can actually get my nails done next week. I learned the hard way after trying that you will get blisters in your cuticle beds.

Here’s some pictures.

This is the worst of my face after I was hospitalized in late September. (Warning, not pretty at all. I know)
And, the next one is today.

this is a picture of what the blisters look like. So the blisters fill with fluid and constantly pop fluid or bleed. They refill and start again. It was an endless cycle. My whole back and chest/stomach in sept were covered like this.

Todays picture.

 

[wishiknew]

Good lord that looks pain full hope it goes away soon prayers sent

 

[riverroyal]

Wow. Just wow. Hang in there.
Getting off prednisone is no joke. Be patient.
I was on those dose amounts for a heart condition and it took a solid year of cutting amount, then up, then down.
Great medication, just tough on your system. Obviously do not go cold turkey, I’m sure your aware.

 

[Xstream]

Stay positive we are behind you continued prayers.

 

[DaytonaBabe]

So glad to read that you are continuing to improve!

 

[OLDRAAT]

Glad you are showing noteworthy improvements. Stay positive young lady and hopfully you will get better soon.
Lot's of good folks on RDP pulling for you. Take care.

 

[RichL]

Glad to hear that you're on the upswing. You've got this.

 

[HBCraig]

Hope you get well soon

I have been enjoying life so much in the last few weeks, I haven’t been on much. I can’t seem to say no to any invitation out after being home bound all summer and being in pain. It’s amazing how much more you appreciate life and the little things after going through all that.

The IVIG knocks me down for a few days with migraines and fatigue. My next months round is Nov 16, 17, 18th. After about 5 days, I bounce back. My face is healing quickly! Almost all the blisters and scabs are off. I have blotchy red scaring, but they told me it would fade, plus make up. I am totally ok with that. I am out of pain and haven’t had new blisters. I am so grateful for that. My scalp is also healing, it feels soft still, but I feel like by December it will be better. I am not sure how fast my hair will grow back on the top of my head, but that’s ok.

The doctor is thinking of keeping me on monthly IVIG for year or two since the studies show after two years flare free, it may never come back. I still have two more rituxan infusions to do this year. They finally are tapering me down on prednisone. I will be down to 60mg in a few days. I was on 150mg at the hospital. Hoping my steroid round face and water weight gain will start to disappear. I already have my wedding dress.

So I am doing pretty well! Infusions days and the day after suck, but the progress is amazing once it kicks in.

Really appreciate everyone kind words and support. It helps a lot!!!


Side note- I know the girls on here will know how much this would suck. When the disease flares up, there is to be no damage to the skin. You cannot shave, pluck, wax, use any abrasive cleanser, mani, pedi, basically nothing that can injure the skin. I am not a girly-girl, but I felt like a man all summer. I can actually get my nails done next week. I learned the hard way after trying that you will get blisters in your cuticle beds.

Here’s some pictures.

This is the worst of my face after I was hospitalized in late September. (Warning, not pretty at all. I know)
And, the next one is today.





View attachment 1168681 View attachment 1168682
this is a picture of what the blisters look like. So the blisters fill with fluid and constantly pop fluid or bleed. They refill and start again. It was an endless cycle. My whole back and chest/stomach in sept were covered like this.


View attachment 1168684


View attachment 1168695

Todays picture.
View attachment 1168694

 

[RiverDave]

Your attitude throughout this is inspirational

 

[SoCalDave]

^^^^^This

 

[Activated]

^^^^^This

Seriously this.

 

[SoCalDave]

Seriously this.

 

[PaPaG]

Prayers continue from our family to yours. Your positive attitude helps that is for sure. So glad to see you healing.

 

[Activated]

View attachment 1168755

I was agreeing with you.

 

[Joe mama]

You are definitely one tough cookie. You are already looking much better. I would say your on the downhill side of this. Thanks for sharing and definitely an inspiration.

 

[SBMech]

You can do it! Glad to hear you are recovering and it's a positive outlook from here!

Many positive vibes and prayers still going your way!

 

[FreeBird236]

I pray that you are one of the ones that never has it come back.

 

[rivrrts429]

I pray that you are one of the ones that never has it come back.

This is a hell of a journey you’ve been on and you’ve been nothing short of remarkable throughout it.

Very happy for you that you’re finally on the path to hopefully getting the relief you deserve. Your attitude should be commended. This world could use more people like you.

Cheers to your health

 

[angiebaby]

I’m so glad you are feeling better and the recovery is going well!

 

[jet496]

You're one tough cookie and an inspiration!

 

[Jed-O]

To you guys that have never met @Socalx09 in person, she is definitely an amazing human being. Angela and I had a great time meeting her and her close friends/family back in May and we instantly loved her. We met up with her at the Outer Harbor and low and behold RiverDave walked in shortly after and I was honored to introduce them.
Chanel, thank you so much for your invitation to the Halloween party last weekend, it was so difficult to tell you that we couldn't make it. But we definitely want to hang out with you again soon. You and Angela have so much in common. Please feel free to give us a call, text or here if you want to come hang out in the miserable fuckin white shit. We'll be happy to have you guys come and hang out .
Be well sweetheart, love Jed and Angela Riach

 

[Socalx09]

Wow. Just wow. Hang in there.
Getting off prednisone is no joke. Be patient.
I was on those dose amounts for a heart condition and it took a solid year of cutting amount, then up, then down.
Great medication, just tough on your system. Obviously do not go cold turkey, I’m sure you’re aware.

Prednisone is definitely no joke. They are hoping then when they lower it, I don’t get any new blisters because of the rituxan and IVIG, but the side effects at just bad. It started to affect my eyes at night so I can’t drive when it’s dark out. Hoping I get no serious side effects from tapering down. It’s interesting how they will do a big jump from 80-60, and then will cut it 2.5 mg to 5 mgs from there every two weeks. The probiotics seem to help with my stomach.

 

[Socalx09]

To you guys that have never met @Socalx09 in person, she is definitely an amazing human being. Angela and I had a great time meeting her and her close friends/family back in May and we instantly loved her. We met up with her at the Outer Harbor and low and behold RiverDave walked in shortly after and I was honored to introduce them.
Chanel, thank you so much for your invitation to the Halloween party last weekend, it was so difficult to tell you that we couldn't make it. But we definitely want to hang out with you again soon. You and Angela have so much in common. Please feel free to give us a call, text or here if you want to come hang out in the miserable fuckin white shit. We'll be happy to have you guys come and hang out .
Be well sweetheart, love Jed and Angela Riach

We had such a good time with you both that day! We can’t wait to do it again. Thank you for the kind words. Definitely will take you up on that offer and make plans with you guys.

Congratulations again on getting married a few weeks ago! Angela and you are perfect for each other and she’s great! We definitely have a lot in common. I’m trying to convince Robert to get a jeep in the next two years lol!

 

[Socalx09]

Thank you all for your positive words and continue support. It definitely has been a battle and I won’t lie, there were many days when I was done. I cried, screamed and was really mad at the world. But, you have to continue to fight and hope the next day will be better. When I go into the infusion center, it is very humbling and heavy. There are people in there fighting for another week or month and I need to check whatever anger I have at the door because I’m not going to die from this. Could it be a fatal disease without medical treatment, yes. It is a very painful and deliberating disease. It took a lot out of me, but I can’t imagine what some of the people around me are going through when they have limited time left and they continue to fight for more. Even seeing the loved ones in the waiting room makes you think real hard about what you are doing in your life and what more you could do. That’s what keeps me having a positive outlook.

This is how fast IVIG works once it kicks in which is usually day 10-14 after the infusion for me. My face is already so much better than a few days ago when I posted the other picture. It’s like I have super healing powers right now. I can recognize myself! We are thinking I will be well enough to go to Glamis for thanksgiving!

 

[BabyRay]

I’m new here, and obviously don’t know you, but I’m super impressed with how you’re handling this.

Heck, I’ve suffered lesser illness, and I probably wasn’t as positive. You’d have to ask my wife. I’m sure she’d tell you.

 

[stephenkatsea]

Prednisone is an amazing medication. Jerry Lewis opted to take it for his pulmonary fibrosis. It saved his life. Gave him many more years. Our Mother also had pulmonary fibrosis. She opted to not take prednisone. The fibrosis took her life.

Your photos show amazing improvement. You definitely have this condition headed the right direction. Good Job.

 

[Ducksquasher]

God Bless you...you are inspiring to say the least.

 

[rightytighty]

Your attitude throughout this is inspirational

Perfect response and so very true. Good luck and keep fighting!

 

[Socalx09]

Start of round 3 of IVIG. I am well enough to go to Glamis for thanksgiving and ride in the RZR. I was worried I wouldn’t be able to wear a helmet without it irritating my scalp and face. But, my scalp and face have healed enough to do so! We installed the pci race air to protect my face from any irritation from the sand/dirt and to keep me cool. Hopefully I like it. I enjoy the open faced helmets a lot.

 

[stephenkatsea]

Enjoy! Lord knows you deserve it. All the best.

 

[MissB]

@Socalx09 Girl! Holy shit, I haven't seen this thread, I just read though it. You are one tough cookie. I so happy you are feeling stronger/better!! I second Stacy's comment about the Medical Medium guy, celery juice. Keep us posted and have a wonderful Thanksgiving!

 

[DaytonaBabe]

I hope you have an epic trip to Glamis and a very happy Thanksgiving!!!!!!!

 

[HNL2LHC]

Such great news. I love to see the progress on the right direction!!!!!

Hope you have a blast on the Holiday. Be sure to post up images of the festivities!!!!!

 

[Familyties]

Get Well Soon

 

[Socalx09]

@Socalx09 Girl! Holy shit, I haven't seen this thread, I just read though it. You are one tough cookie. I so happy you are feeling stronger/better!! I second Stacy's comment about the Medical Medium guy, celery juice. Keep us posted and have a wonderful Thanksgiving!

Thank you for your words. It’s definitely been an experience these past few months. Every day I’m getting better. I am definitely incorporating what @RiverDiva posted with the medical medium guy. I’ve been listening to his podcasts. I’m on so many oral medications, I think I have my grandma beat! Lol. My dermatologist wants to keep the current plan of treatment until after my wedding in April at least so there’s no flare ups. Hope you are doing well!

Happy thanksgiving too!!

 

[Socalx09]

I hope you have an epic trip to Glamis and a very happy Thanksgiving!!!!!!!

Thank you!! I can’t wait! Happy thanksgiving too!!

Such great news. I love to see the progress on the right direction!!!!!

Hope you have a blast on the Holiday. Be sure to post up images of the festivities!!!!!

Thank you!! The nurses at the infusion center came over to see my progress from a month ago and were so happy to see the improvement. It was a nice feeling to have.

I will definitely make a Glamis thanksgiving thread. It’s going to be a good time!!!

 

[Socalx09]

December IVIG time! Besides the chubby cheeks and weight gain of the steroids and infusions-I am so much better! The scars on my body and face are lightening. I still feel fatigued on a daily basis. I can’t seem to get my strength back to before all this started. I had a minor flare up in the last 10 days that seems to be resolving on its own. Most likely caused by tapering prednisone too fast.

The nursing staff at the infusion center at Kaiser in Anaheim is amazing.

 

[HNL2LHC]

December IVIG time! Besides the chubby cheeks and weight gain of the steroids and infusions-I am so much better! The scars on my body and face are lightening. I still feel fatigued on a daily basis. I can’t seem to get my strength back to before all this started. I had a minor flare up in the last 10 days that seems to be resolving on its own. Most likely caused by tapering prednisone too fast.

The nursing staff at the infusion center at Kaiser in Anaheim is amazing. View attachment 1180471

Looking great!!! So happy to hear things are still getting better.

 

[wallnutz]

Happy you are responding positively to the treatment!!!

 

[spectra3279]

Damn. I hope it works

 

[angiebaby]

I was just wondering about you today! Thanks for checking in!

 

[riverroyal]

I posted back a few pages.
I was on prednisone for about 18 months for heart disease.
It's a great medicine and the benefits out weigh the side effects.
But damn it's tough to ween off. Ups and downs. All I can say is patience.
As much as you think you can stop cold turkey, you can't. Your body will let you know you can't!

Glad to see and read your getting better. We love updates around here.
Just read the speed utv thread. Lol

 

[stephenkatsea]

So good to hear. You and your journey have been amazing. One of the earlier beneficiaries of Prednisone was Jerry Lewis. The med was successful, but he also experienced the added weight, as a much older guy. And then was able to take it off. You’ve got this! Have a Very Merry Christmas. Please keep us updated. Always look forward to your posts.

 

[SBMech]

You look great! Keep it up! I am sure after all is said and done the extra weight will fall off easy once your metabolism evens out.

 

[RogerThat99]

Glad to hear you are improving, and moving the right direction.

 

[HTTP404]

Right on!