Just joined.....about me and my husband

[Guest guest]

Hi Everyone,

So glad to be a part of this group. We found out last week that my husband was diagnosed with RP. We are both still in shock after being told that it is a serious disease. I've taken it as a death sentence for my husband. We are both 35 and were planning (already taking steps) to try for another child in January. Now, it's like, "okay, should we do this or not."

A new and very sweet and supportive friend has been corresponding with me that it is not a death sentence. It was my idea to join this group since I'm the Internet addict in the house and my husband rarely checks his own. So, any information I get from anyone regarding RP will be passed on to him. He said he has not taken it has a death sentence. It's really difficult when you feel like your life is falling apart around you and there's nothing I can do to prevent it. People set plans in their life to do certain things and now, those plans will be altered. It's hard when our daughter tells me to smile at her because I feeling like crying now all the time. And I have to keep up a front for her. She's only 4.

We are waiting to get all the info. back from all tests before deciding about the baby thing. He is scheduled next week for an eye exam, MRI, and CAT scan. So, far, the disease has only attacked his ears and maybe his throat (he'll have the diameter of his throat measured next week to see). The heart valves and aorta have been ruled out with an echo--so thank God it has not spread there. He does experience mid-chest chest pain. They currently have him taking 30 mg. of Prednisone.

I would welcome any and all supportive information regarding RP, whether it be from personal experience or medical evidence. I have a web site myself to offer support to those who suffer from OCD (Obsessive-Compulsive Disorder) and Clinical Depression. So, as you can imagine, since I have both of these illnesses, that it is rather hard for me to NOT go to extremes in my mind regarding this diagnosis. If you're interested or know someone who might benefit from my site, the address is:

www.thereisocdhope.com

Thank you all and I pray God will bless and keep you all safe under his wing.

[Guest guest]

Hi ,

I have had RP for about 4 yrs now.

I also thought I was going to die.

I am still learning alot about this diease but I will tell you, Once your hubby gets his flares under control it will get better.

Just remember, when he gets a flare, make sure he gets on predisone right away so he doesnt damage any part of his body that is flaring.

This group is Wonderful!!!! If you have any questions there is always someone here to help you get the answers.

Also, Tell your hubby that Stress is a reason for flares. Tell him to try not to stress out.

Remember, Things will get better, Right now its all new and you dont know exactly what to expect.

Sounds like you have wonderful Dr's So thats a big help right there.

I also work full time and lead a pretty normal life. Only thing I notice is that I get tired alot easier now so just have to learn to slow down more.

Hang in there!!!!

Carol A from Minnesota

[Guest guest]

welcome LESLIE,

we 're all here for suport all of us.

I'm not sure i 'll be able to help you a lot because i "call "from FRANCE. But you'll find a lot of nice US"gail" in this group.

Bienvenue

Marie-pia

[Guest guest]

Hi ,

I am glad you found us. This group is a wealth of information. It sounds like your husband has a good Doctor and that is half the battle in fighting this disease. If you have questions, ask away.... Someone can help you.

Hugs,

Sandy

-- Just joined.....about me and my husband

Hi Everyone,So glad to be a part of this group. We found out last week that my husband was diagnosed with RP. We are both still in shock after being told that it is a serious disease. I've taken it as a death sentence for my husband. We are both 35 and were planning (already taking steps) to try for another child in January. Now, it's like, "okay, should we do this or not."A new and very sweet and supportive friend has been corresponding with me that it is not a death sentence. It was my idea to join this group since I'm the Internet addict in the house and my husband rarely checks his own. So, any information I get from anyone regarding RP will be passed on to him. He said he has not taken it has a death sentence. It's really difficult when you feel like your life is falling apart around you and there's nothing I can do to prevent it. People set plans in their life to do certain things and now, those plans will be altered. It's hard when our daughter tells me to smile at her because I feeling like crying now all the time. And I have to keep up a front for her. She's only 4.We are waiting to get all the info. back from all tests before deciding about the baby thing. He is scheduled next week for an eye exam, MRI, and CAT scan. So, far, the disease has only attacked his ears and maybe his throat (he'll have the diameter of his throat measured next week to see). The heart valves and aorta have been ruled out with an echo--so thank God it has not spread there. He does experience mid-chest chest pain. They currently have him taking 30 mg. of Prednisone.I would welcome any and all supportive information regarding RP, whether it be from personal experience or medical evidence. I have a web site myself to offer support to those who suffer from OCD (Obsessive-Compulsive Disorder) and Clinical Depression. So, as you can imagine, since I have both of these illnesses, that it is rather hard for me to NOT go to extremes in my mind regarding this diagnosis. If you're interested or know someone who might benefit from my site, the address is:www.thereisocdhope.comThank you all and I pray God will bless and keep you all safe under his wing.DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU