Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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twyliah 08/27/2013

One. Even when I am not feeling well enough to comment, I gain comfort from reading y'all's posts. Thank you for being such a good, supportive group of people.

Two. I'm not feeling well. For those of you who don't know, I and my body have been battling chronic shingles for about seven months now, nerve pain and all, to go with the RA. I've developed Bell's Palsy, shingles in my ear which damaged my ear drum, swollen ribs due to shingles (they think), etc. I am having a really bad shingles flare right now on my face, head, back, and butt mainly. Also in my eyes. I've developed sun sensitivity to go along with everything else.

Three. I have a wedding to go to toward the end of September. I will be seeing many people that I went to graduate school with. I am worried because they don't yet know about my RA. I have shingles on my face, I will have to remain in my prescription sunglasses even in doors, and I have aged a lot. I look more 52 than 39. I'm not normally vain at all, but I really hate for people to see me struggling. I know all the right things to say to myself and my sweet daughters said they will help me shop for a new outfit and give me a makeover. They are really good girls.

Anyway, I have gotten it all out I think. That's what's going on with me!

deleted_user 08/27/2013

Twyliah - I'm so sad to hear that the shingles are still messing with you, to put it mildly! I want you to know that I think of you often and pray for you. I'm sending you all my best wishes, prayers, and hugs for comfort and relief...

I totally understand about your anxiety about the wedding. I think many of us can relate to that feeling - it's not "vain" - it's human! But you are setting a really good example for your sweet daughters - showing them through your actions that no matter how you feel, you are making the best of a challenging situation. I can't think of a better gift you could give them.

Hugs to you during this painful time...

bluedogs2 08/27/2013

Oh Dear, Twyliah, we are here for you. Sounds like things are really stacking up. That shingles thing sounds awful. Is there a lotion or something you can apply to help ease the discomfort ? Having never had these devils, but watching my mom deal with them I know it's no fun at all.

I know you fell bad and that makes us THINK we look terrible and I understand your thoughts.

Your daughters sound like they are your blessings

Peace and rest when you need to

Bluedogs2

trishcorsi 08/27/2013

Daughter's are a wonderful blessing! Mine can make me feel like a million bucks when I am down in the dumps. And trust me when I said I understand vanity, I think it's my middle name. Shingles are quite awful, my sister has had them & combines with everything else that you have going on is so sad. I'm crossing my fingers for everything to clear up before your event. Trish

twyliah 08/27/2013

Bluedogs, Trish, and Scarlett, thank you for your support, my daughters definitely are my blessings! They are 17 (Maison) and 15 (Maddie) and they are just good, well-rounded, smart, funny, and beautiful girls. I didn't really sleep last night due to itchiness, so being so tired is contributing to my funky feeling today. I do have many creams, some for drying, some for nerve pain, some for itchiness and they do help (I'd hate to be without them) but only a limited amount. I take Benadryl and it really doesn't even touch the itchiness. I'm on a strong round of antivirals again. Hoping they will help.

MaryPop 08/28/2013

Twyliah - I'm so sorry you are going through all of this. Please know you are in my prayers. Take care of yourself and know you are cared for by all of us here!

Melinda56 08/28/2013

Twyliah, I'm so sorry for all that you are going through. No one knows until they walk in our shoes. I pray for a month of healing and strength for you. Prayers

willferg 08/28/2013

Shingles is a horrible thing. I had it in my eye and wouldn't wish it on my worst enemy (feel the same way about RA).

Try to imagine someone you know being in your shoes and having doubts about going to the wedding you'd no doubt think, "No one cares how you look, we just care about you and want to see you!" I think that's how all your friends will feel about you.

I hope you feel much better by then and are able to have a good time at the wedding!

Sunvalleygal 08/28/2013

I am so sorry that u are facing this. RA is horrible enough.... but the singles are HORRIBLE.... My neighbor had them and I felt so sorry for her. I know this must be hard....even if you're not vain we all want to put on our best face when seeing people we've not seen in a long time....like class reunions, etc. I didn't get to go to my 30 year class reunion bc of RA. I'm so glad u have your daughters and i bet ppl will be understanding about your situation! I hope u have a great time.... your health is more important than what ppl think. And things may be really much better in a month!

deleted_user 08/28/2013

So sorry. Sounds like you are really struggling with health issues right now and it's certainly gone on too long! I understand from friends who have had it that shingles is very painful. No one should have to deal with so much at once. God bless your sweet daughters! Let them give you a makeover--it's bound to lift your spirits and theirs. I wouldn't worry about the aging thing. First of all, it's hard for us to be objective about ourselves, so you probably look a lot younger than you're giving yourself credit for, and secondly, I assure you that many of your friends have aged plenty, too!

You're way past due for some relief, so you'll be in my prayers. Hope you can enjoy yourself at the wedding. (BTW, I have to wear sunglasses indoors, too, and it's rare that anyone even asks about it. When they do ask, I just say it's a medical issue and let it go at that.)

God bless,
Marlene

GrammyKat 08/29/2013

Twyliah, I am so sorry that you have this struggle going on. You will remain in my prayers. God Bless,
Kathy

Christine26 08/29/2013

Hi my friend Twyliah, I am so sorry you are suffering so. Oh my goodness. My prayers go out to you. I hope you have improved since you last posted. Hopefully the aging part will reverse itself once you are on the mend and feeling better. My prayers go out to you as you go through this difficult time. Feel better real soon.

twyliah 08/30/2013

I have felt pretty awful the last few days, but my shingles seem to be drying out a little on the acyclovir this time around. I'm hopeful but skeptical because this is the 5th round of acyclovir. I am envisioning a hospital stay and some IV antivirals in my near future.

Thank you so much to everyone for your thoughtful posts, messages, and hugs. It helps a lot. It is very nice to have the support of this group. I really, really appreciate each of you!

nancyfoco 08/30/2013

Twyliah, I am so sorry you are dealing with so much discomfort. You are blessed to have such good daughters. I'm glad the acyclovir is helping. Get some rest and know we are here for you.

Nancy

RetiredNow1 09/01/2013

Wow! You certainly are being bombarded with health issues, right now. I've always heard that shingles is truly miserable, and you seem to have a particularly awful case. Add to that your RA, oh my. You are in my prayers for recovery and comfort.

I understand your feeling about the wedding, but you know that you would regret not going. Your daughters sound like wonderful support and I suspect your friends and relatives will be, as well. I suggest that you go and enjoy, renew those friendships and you'll be able to connect again when you are feeling better.

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