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08/29/2009 04:28 PM

Feeling helpless, but certainly NOT hopeless!!!

mikenmattsmom
mikenmattsmom  
Posts: 11
Member

I'm 36y.o., was diagnosed w-RA a bit over a year ago.

I have 2 beautiful boys & a husband who's support has worn thin. In fact, it has taken a toll on my marriage and with my employer. I read somewhere that RA is a "lonely" disease. I can absolutely relate to that, to say the least. I call it:The Luck of the Draw Disease-can't predict my painful flare-ups, but feel super lucky on the days they dodge me!! I joined this group seeking support & perhaps some legal advice regarding persons with such disabilities & their employers. At this point, I feel as if I have to be bleeding out of my eyes & ears for my spouse, friends, family, co-workers & my supervisors to believe that I'm in pain & have a chronic disease & realize that it's a disabeling disease. Sometimes it requires me to be homebound, frequent visits to the hospital/doctor's. I can explain the disease until I turn blue, but it's hard for others to understand. I get frustrated when requesting reasonable accomodations at work during my flare-ups or simply asking my husband for help, because I get the look of doubt...I'm not asking for the Red Carpet/VIP treatment, just want those who don't walk in my shoes to have a heart & some knowledge of the card I've been dealt with!!!Sad

Post edited by: mikenmattsmom, at: 08/29/2009 04:36 PM

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08/29/2009 04:55 PM
ammelo36
ammelo36  
Posts: 104
Member

I know how you feel. One of the reasons my ex left me is because of the RA. Not just the aspect of helping me, but the financial aspect as well. My kids refuse to help me, and the few friends I have, they acknowledge that I am in pain, but they think I should be able to continue to do everything I could before the RA. I was a stay at home mom while married. Now I am finding it twice as hard to find a job, because of the RA and the lack of work experience.

08/29/2009 05:36 PM
ypiper1973
ypiper1973  
Posts: 21
Member

I'm sorry to hear what you are going through. I am lucky enough to have an employer that preaches health and family first, but my husband just doesn't get it. I'm plagued mostly by fatigue and he feels I should be able to do what a healthy person can. He constantly over schedules our activities and then gets upset when I cancel. He thinks I am lazy when I take naps. I've taken him with me to Dr's appointments and have given him articles about RA to read to no avail. I wonder what he tells other people. I've more or less given up trying to explain and am concentrating on taking care of myself. If it ends my marriage, so be it.

08/29/2009 05:43 PM
ammelo36
ammelo36  
Posts: 104
Member

I wish fatigue was my only problem. This flare up has me swollen and in major pain. hard to get up and down, hard to walk, hands ar so swollen i can't grip anything. yet i am somehow suppose to be able to do everything myself. it sucks big time.

08/29/2009 05:47 PM
kvnj
kvnj  
Posts: 3907
Group Leader

Im there with you. My husband doesnt get it at all. Told me today to stop taking the methotrexate( which I do tonight) because if I am having side effects and cant do my usual duties with the kids and house on Sundays that it will inconvenience him. Ahh to heck with becoming crippled. Im READY for divorce. Would welcome the peace. At least I wouldnt be subjected to his rages anymore.

08/29/2009 05:51 PM
ammelo36
ammelo36  
Posts: 104
Member

sounds like my ex.

08/29/2009 05:54 PM
ShepherdTrainer
ShepherdTrainer  
Posts: 562
Member

Welcome Mike and Matts Mom: being from the other side of the fence "a male" my complaints about family, friends etc not being able to understand what is happening to You are the same. My heart goes out to all the female RA members who have so many more things to deal with then i do.

Today I even managed to aliened my dog's as i failed for the first time to take them for a good walk. My fatigue overwhelmed me not to mention pain. Tonight I will try again as i got myself up and moving about. My wife is a Angel together we raised two sons and two adopted autistic children plus we had a German shepherd Rescue. But recently I have gone out of control with my health and i feel She is overwhelmed and scared about what is happening to me.

My family Dr. is also a family friend and told Her what to expect in terms of my failing health and the strong hope that with new medication, the meds will stop the disease from attacking and give me back a normal life.

My family can see the progression of the RA in and on me as my fingers and toes have went from normal to now looking more like claws and i have shown them my xrays and lab reports and a laymen can easily see I'm getting my rear end kicked by a disease called RA.

I can advise You to quickly seek out a knowledgeable attorney who can advise You how to deal with the potential problems with your employer, Insurance, Social Security and family law so that You know in advance who what and where and can make some kind of plan for the future.

While down right now I know i will respond to treatment and rebound and return to

the person i used to be" but" i must prepare for potential flare-ups and look out for side effects of the meds.

So I'm telling Ya this old Dog still can lift my leg and pee on this RA and being a old fossil if I can do it so can You. hopefully your husband remembers those vows for good times and bad times as my wife and i have been to hell and back many, many, times and were still here riding this roller coaster called life.

Your now in my prayers and Your in a fabulous group filled with love and care.

Your: Shepherd Trainer who's tired of complaining and ready to kick so RA behind ! Please join me in the fight. Tommy


08/29/2009 05:57 PM
kvnj
kvnj  
Posts: 3907
Group Leader

<~~~~~ Pulling on my S.K boots!!!!!!!!!!!!!!

08/29/2009 06:06 PM
kvnj
kvnj  
Posts: 3907
Group Leader

By the way ladies, welcome to the group! We're glad you joined us, and as you can see its a great place to connect with others in similar situations, vent, and learn from other's experiences. We're all kind of living parallel lives....

Im sure you'll be getting many more responses as the weekend wears on.

Wander through the different forum headings .. theres a lot of interesting stuff on here Smile

May you all begin to feel some relief from your pain, exhaustion, and frustration very shortly Smile

karen


08/29/2009 06:11 PM
mikenmattsmom
mikenmattsmom  
Posts: 11
Member

OMG, I'm filled with tears right now! I cannot believe what I just read from all of you!! I'm overwhelmed with all the support!! I AM NOT ALONE!!! I am so grateful for all of your replies, as this day started off on a wrong note for me. Now I feel understood!!! THANKS O'BUNCH for your warm welcoming!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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