Dealing with life..

By Michelle Monday, November 17, 2008

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Hi Im new to this site..Im a 32 yr old mother of 5 beautiful kids..Ive been diagnosed with RA..Fibromylgia..and Lupus. Not fun let me tell ya! I was diagnosed with Lupus at 20yrs old..but didnt know what that was so never took care of my self until 4to 5 yrs ago...when I was in so much pain then started getting other symptoms and was diagnosed with everything else..THis last year has been such a struggle..I dont know how I do it.. I have my husband and my kids that do help me ..but since my husband works so much and is gone days on end..I have to rely on God and Myself..I guess my family is to busy with there own lives and to them I really don't look sick..Its hard..very depressing at times..I didnt know live could be like this..Especially when I was so active...Always at the gym..I cant even open my own med bottles..or walk..The heels on my feet hurt so bad..My husband literally have to hold me up...I feel like screaming at times because Im sure everyone here knows ..we just feel alone..Or at least I do..I have noone to talk to about this..Im so glad I found this sight! ITs such a relief to know that Im not going nutts!! and that there is a lite at the end of the tunnel!

Does anyone, Ever feel Guilty about this Disease!! Like your Cheating the ones you love!!

Comments (21) | Add comment

Laura Tilling

11/20/08 10:09am

Hi Michelle,

You are not alone, although at times dealing with all the pain is a very lonely experience. Unless you walk in our shoes, there is no way of even beginning to understand what a struggle living is. When pain is the biggest part of your life it is depressing and scary. Stay in touch with other people. Make them your lifeline, it helps.

Laura

Michelle

11/20/08 1:43pm

Thank you for welcoming me! I do get very lonely at times..And the pain is unbearable..It really does help to talk to you all..Im reading so many post that wow Im in awe now! Im relating so much to you guys and It feels nice to know that really, were going to make it!!

Thanks again

Michelle

Lene Andersen, Health Guide

11/20/08 10:50am

Welcome to our "club"! I like to say that we thought of having a secret handshake, but it was too hard on our joints, so now we just give verbal hugs instead!

Whoa, that's a lot for one person! And taking care of 5 kids, too - I'm in awe. Sorry you have to deal with so much. This site is fantastic - everyone's so nice and supportive. Thanks for doing a SharePost and please write more as often as you want - we're here to help you.

Michelle

11/20/08 1:48pm

Thanks for the comment! It really is a verbal hug let me tell ya!

My kids are 14,12,10,9,7..But I wouldn't change it for the world..It is alot on me! but Im glad I found this site..It really has helped me these past days!

THank you for the welcome...and for taking the time and commenting my post!

Michelle

sylvia

11/20/08 12:05pm

I can only say how very sorry I am for your pain. I hope the doctors can do something soon to help you life more comfortably.

take care

Carol F.

11/20/08 2:01pm

Dear Michelle,

I'm sorry for your pain!! I too have RA and fibromyalgia. It's no fun at all. I have three daughters 30,23,13. I was married for 27 years,divorced for 4 and now making plans to remarry my ex. I love him dearly, but have a desperate need for the insurance he can provide me. I've had none and can't take the proper drugs because of the high costs!! I have a strong faith and just know that someday there will be a cure for us, or at the very least, drugs available that won't due more harm than good. God Bless you, and know that you're in my prayers.

Michelle

11/20/08 2:07pm

Thank you!

I really appreciate the well wishes! I hope the same to you! God bless ya!

Michelle

11/20/08 2:11pm

Wow your marrying your ex..I Know what you mean about the insurance! I wish you well..And I hope and pray that there will be a cure..Because I dont know how much more of this Anyone can take ..Its so painful!! I wish you well ..Congratulations!! And you to will be in my prayers..

Thank you

Michelle :)

Margie

11/20/08 3:44pm

Just like to let you know that we wish you well.

Expectly with the kids,and christmas around the knore.

I don't know how you do it . I have RA & OA and that painful .

God Bless you .

Michelle

11/20/08 4:19pm

Thank you so much! Gosh I hear that OA is painful..let alone having RA. I to wish you well..And I hope your Thanksgiving & Christmas are fulfilling for you! I really dont know how I do either!! THe Grace of God! let me tell ya!

God Bless u to!!

carol beam

11/20/08 6:32pm

i'm going to be 55 yrs old tomorrow, nov 21. i was diagnosed with R.A. when i was 32 yrs old. my son was about 8 yrs old. i didn't know how bad it was for him until he asked if i was going to die. i couldn't walk and i was in a lot of pain. i told him i wasn't going to die for a long, long time even though i felt like i was any minute. i found a dr. that gave me gold shots and pills for a year and a half. i was able to walk and did real good, (even building fences in the country)my R.A. seemed to go into a kind of remission or something. it was like i didn't have it. then about 8 yrs ago i fell at work. i got a neck injury. this caused me to get fibromylgia, which caused my R.A. to come back. i'm able to walk but i have a lot of joint pain and stiffness. my rhumataligist told me they don't use gold any more. nothing they give me really helps much , so i just take each day one at a time. my husband has been with me for 36 yrs, he has helped me in the past and he helps me now with what i'm not able to do. some husbands wouldn't have stayed but he did. our son is 31yrs old now, married and has given us two grandsons. when my son and his wife need us for the boys ,we both go and take care of them. my husband will change diapers , put them to bed and anything that i can't do. we do everything together and it makes it easier on both of us. you just have to do what you can when you can and rest when you can't. thats how i get by. my husband and i are happy. we had to change our life style and adapt it around my illness but we still have fun and enjoy things in life. its just different things than before .you learn what you can and can't do.

Michelle

11/20/08 9:21pm

I understand what your saying! I guess its me, my own emotions that take over you know! I feel like im not worthy sometimes..Ive even told my husband to leave me and himself a whole woman! I know it sounds crazy..But really thats the way I feel..We do everything together also! HE helps me out so much especially with the kids! BUt I cant help feeling that Im cheating him out of alot!

I to feel like im going to die..sometimes..I tell my husband that..I love him so much ..I really dont know what I would do with out him..We have been married since we were 16yrs old.. We got married in Vegas..And have been together ever since..I just dont want him to be with me..because he feels bad for me!! Im learning how to cope with this!! I have had alot of anger! At myself but now Im learning..THanks for the Advice..I just imagined life so diffrent..WHo doesnt, Right?

WIsh you well..Hope your feeling better!!

Michelle

carol beam

11/21/08 9:57am

i felt the same way you do. i told my husband to leave me when i was at my worse. he told me that he loved me no matter what , though the good and the bad. he also said if it was him that was sick would i leave him? of course i said no.now he has two vertabras deterated in his back and can't work. but we will stick together though this also. you never know whats around the corner in your life.you just have to take what comes.when life gives you lemons make lemonade.

Phillip

11/24/08 3:03am

Wow! I have told my wife the same thing. I know she hates to hear it and thinks I'm being dramatic, but at times I really mean it. I can't help but wish that she didn't have to deal with me. She is so good to me even though I'm practically useless to her and the insurance she has is the only thing that keeps me going. I know that's the wrong attitude to have, but we are human and with such an uncaring disease... sometimes we will be down on ourselves.

The important thing is to get back up and keep going. Enjoy any and every good moment and try to think of those during the bad.

Michelle

11/24/08 1:26pm

Yea its pretty hard, To have my husband work 100 hrs a week..than he comes home and helps me out..I feel useless at times!! But thank god he has stood by my side!! I have one of the Great ones!! I dont know to many 33yr old men!! THat would do this..

THanks for the comment..

Its crazy because...We all feel the same!! We Will make it..and You do deserve her..We just have to be as good to them!!

I hope your feeling better today!!

HAppy THanksgiving...

happymomma

11/20/08 10:24pm

Hi Michelle! My name is Kellie; I been dealing w/ RA for 5yrs. Just wanted to let you know that you are not alone, it may feel like it but your not. Having this website can be some comfort to you, of course it's not the same as having your family by your side when you are having "One of those days". I too have a hubby that works a lot (74 to 80hrs a week on nightshift) & I have 3 kids. Sorry to hear that your family is not helpful to you; would they be willing to read some literature about your illnesses? Having RA is bad enough but having Lupus & Fibro. as well is just not fair to you. I just went for my check-up on the 12th of this month & things have gotten worse, in fact the past 7 months have been horrible. A month ago I had surgery on my right hand to release the trigger fingers (middle & ring finger) & the middle finger will never be the same because the RA has gotten so bad. Glad to hear that you rely on God to help you through this; I'm truly blessed to have such a wonderful Church, the people there are amazing. If you would like to have a listening ear just let me know I can give you my email address. It does get rough when your hubby is not always there when you need them the most. Take care & God Bless

Michelle

11/21/08 11:08am

Hi Kellie: I really do appreciate the comment! I am doing better, especially since coming on to this site and chatting with you all! It really has helped me!

Yea having all three of these diseases do debilatate me somewhat! I have noone to thelp me .besides my kids and husband of course!! and I pray and read my bible everyday! Only God knows how I go on with life..Because really I have no strength left! I cant believe how many people are feeling just like me..Im really not alone! I thought I was going crazy for a moment! BUt Im realizing its all part of this illness! I wish I had my family to help..But they have there own lives I guess!! My parents are off on a cruise right now! Well deserved..But sometimes I need them to!! My sisters live near me..They wont come to visit! Its hard..It really is..My parents can be down the street from me and they wont come over or call! I have really found out so much about everybody..Now!! I never thought Family would be like THis!! ..

Enough with my sad story..I need to get over it ..I think!!

I hope your doing well today...Everyday is a struggle but We will make it!!

THanks for listening..and yes I would like your email..So we can continue talking!

I appreciate it!

Mic helle

happymomma

11/21/08 10:12pm

Good Evening Michelle! I hope you had a decent day. Mine was okay, just a little rough because the high for today was only 32 degress~~BURRR! As you know the cold can make the pain even more unbearable. I have a 2nd part of RA called Ankylosing Spondylitis, which is where the bones start fusing together. It's mainly in my lower back where I have microfractures but some days it goes all the way up my spine & around to my chest, so for me the cold is not my friend. Anyway, how are you feeling today? Do you have a jacuzzi or whirlpool tub? We use to have one in our old house & it was great & as soon as we get our new home complete I plan on having another. They can be pricey but you can find discontinued models & it's so worth the investment. Enough of that, something funny happened today w/ our 3yr old son that I will share w/ you to make you laugh~~I was in the kitchen doing dishes & I heard our daughter belly laughing. So I came out of the kitchen & saw her standing at the bottom of the stairs looking up. I went to the stairs & looked up & saw our son standing on the stair landing w/ only his crocs on & his ball cap dancing~~can't leave that boy alone for 5 secs. Now I'll let you get some rest & you can email me when you feel up to it~~jkcog1097@yahoo.com

unipat

11/22/08 8:57pm

Welcome, this is probably one of the best decision you have made latetly. On this site you can unwind without anyone to judge you because we are all in the same boat and I speak for myself no matter how discorage I am I always come and I always leave feeling better. This illness is tough but we as a group can be strong. Blessings to you and your family, may you find the strength to fight and conquer this illness. We are here for you all the time.

God Bless

Michelle

11/24/08 1:21pm

THanks for the welcome!! I do feel like I'd made such a great decision...I have had so low points and everyone here is so incouraging!! Im really happy to have found a website where I can share my moments and everyone knows exactly what I feel!! Im the first and only one In my family diagnosed with this..So I really cant talk to anyone else here who can relate to me!!

THanks again..

WIsh you well..

Michelle

srm777

7/31/10 10:38pm

I have a beautiful niece , her name is Lisa and she has lupus.
She and her husband are raising 2 amazing boys in Hawaii.
Her husband re-enlisted in the army and will be going to
afghanistan soon. She has been on a long journey with her
medical condition but along with her medication, she has faith
in GOD which gives her strength and courage to continue with
her treatments. GOD bless all of you and you need to seek your
salvation thru Jesus Christ our Saviour and pray for healing, for
yourselves as well as everyone else that is hurting.
I will pray for all of you and others. Srm

Dealing with life..

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