All of you know all about RA ,so I need not go into the details of living with the disease. When I first bcame sick I had a sudden,acute onset. I also had several other health issues hit me at the same time. I was basically crippled up, and in great pain. My cognitive abilities lost due to a severe B-12 deficit.
Well, I had to leave a lucrative practice as an Optician. My combined illnesses stole away the ability to work at all. As you know even getting thru a day at home can be very challenging. Losing my career was extremely devastating.
As with everyone out there, somedays are worse or better than others.
For Christmas having low funds, my daughter {who is ten} and I made some simple earrings for the gals in the family. My daughter did the plier work. And I printed off some photos put them in frames. Those were our gifts.
The only interaction I have with the outside world is with my family, and two doctors.
At Holidays and family gatherings I don't complain. I put on some makeup, and try to look presentable. I put on a smile, and do the best I can. I try to be helpful to the best of my abilities.
I have a small outside family. Its my in-laws on both sides mother,father, sister and brother in laws. I have no family of my own.
Again, as everyone knows becoming approved for disability is a long and difficult process.( I have had benefits since 2002 ] The other day I received a letter from S.S disability saying I was being investigated, and re- evaluated! So I had to filll out pages of paperwork. Which left my hand swollen and very painful not to mention the stress of the limbo of waiting to see what is going to happen. Will I have to endure the whole process again... will I lose my prescription drug coverage, my insurance , my small income.... what will I do .....
I guess that the Christmas gifts gave this particular spiteful in law reason to question my disability. Its all I can think of of.
At the time I noticed and even commented to her she seemed perturbed. She said "well I'm In pain" She is constantly complaining with monthly female problems and headaches, etc.
I believe by the process of elimination that this family member must have decided I should be working. She has always been resentful of me, and I don't know why... these people do not have an inkling of an idea what we go thru with an illness like ra.
I'm hurt and feeling betrayed obviously venting. I'm sorry for that, but thank you for listening.
Ginni
Oh Ginni~I'm so sorry to hear what a hard time you are having. I'm also disturbed by this other matter of your disability. Is there a chance that they are just investigating this on their own and it has nothing to do with the in-law? I do think sometimes they do that....and you might be getting worked up over this "family" member for nothing.
I hope that's the case; other wise.....that's the worst thing I have ever heard.
Don't give up. It wil all work out. Try to stay positive.
Hi Ginni
I am so sorry you have been through so much, with losing your job ( which takes away not only your income but your individuality).Its hard to put on a smile everyday just to please other people as well. None of us like to moan about our illness but to pretend to people doesnt help either.We need to make sure they are well educated on our disease. If they dont want to know then thats their problem, you have too much to deal with.
I think its wonderful what you did with your daughter with regards to the christmas presents, even with all your pain and discomfort you still tried to show you cared.Does your husband show you support?
I lost part of my disability benefit due to re-evaluation but am back n track now.I know the worries you are experiencing and wish you all the best with it.
Please feel free to vent on here as we have all done so a few times
Ginni, Social Security does do reviews over a period of time. That is probably what is happening. Look for a disability advocate in your area to help you through this process.
The family problem is harder to deal with and many of us have faced that. You do have to educate them. Sometimes you have to confront those attitudes. But right now, you sound really down.
See if there is some kind of counselor available for you to help you deal with these family problems. And, I bet your daughter will treasure forever what the two of you did together. In bad times, my kids have risen to the occassion (most times) and it has made them people of great character. That's the best gift of all that you give your daughter.
Don't let the selfish views of others take that from you. You are doing the best you can with what you have. Nobody, but nobody, can ask more of you than that. If they think you can do more, offer to let them spend some time with you, walk through your day with you. And stop pretending that it isn't bad. It is. You have to face it and so do they. Sorry, that's just the way it is.
Post often so that you can get some more encouragement.
Social Security checks my blind pastor every 3 or 4 years to see if he is still blind, lol. You were awarded in 2002 and I think also that it could just be SS re-evaluating you. I was told that I would have the same thing after being awarded. If it was a family member that turned you in shame on them! Your Dr's records should prove otherwise.i think you should probably also join a local chronic pain support group, or the local arthritis society meetingsGinni, I KNOW what you mean. My family gets tired of me being sick just like I do and they don't want to do things for me. I don't blame them. After time though they have gotten better. My extended family was very concerned when I am using the cane, but I noticed what I thought was suspicion when I went there without a cane last time I visited. PEOPLE JUST DON'T GET IT. I applaud your effort at Christmas gifts and those are the kind of gifts that should be appreciated the most. You have to learn to not let this in law get to you. You know how ill you are and how unpredictable RA is. We have to all learn we do not need validation!!!!
Being re-evaluated would really upset me too. I just got on SSDI. Let me know how the process goes. I hope it is over and done with good results soon. Come here for support - YOU GOT IT
I know you don't want to complain, but I think you had better make it clear to your family how ill you are. Maybe a simple letter to each family memeber, something to the extent of: "I hate to complain, but it has come to my attention that some of you do not know the seriousness of the rheumatic autoimmune disease I live with. I am not able to (list all daily functions you cannot do), etc. Quote some Johns' Hopkins, etc, websites that go into the details of how people with RA are more likely to die young, heart attacks, etc (quote all the grim statistics). Make sure you print out the picture from the JH website that has the fingers curled up and crippled.
It is hard for people to understand how serious a disease called "arthritis" can be. I know my kids were the only reason I was able to live through the pain-- without them I would not have wanted to live like that. Luckily, I am in remission now thanks to AP. You need to try not to be so stoic. Explain that you cannot function. I will try to get you some webstires to quote...
Thank you ...all of you. I definitely feel like I have a support network with you guys, and Karen I'm going to follow your advice, so if you find those websites let me know. I have made a concentrated effort over the past few years to hide my illness. To the extent of near social isolation. So, its no wonder the family that I have outside the house would lack understanding. I have been quite stoic.
Sophistablack -your right I do need to find a support group. I'm going to check my local newspaper for one. And Angie you did write what you wrote perfect. You really helped me put things in perspective.
Thank you also to Lovie, Pin Cushion, Deanna,Bonnie and Roxie.
Ginni - so many of us know on this site what you are going through so please visit here often - it is really a lifesaver for some of us. I have had RA 10 years & I am now going to stop saying 'I dont blame them for not understanding' - I think family & friends need to make some sort of effort to understand what we go through & we have to make sure they do - like it was suggested find all the worst details of RA, print it out & hand it out. I especially think for the young ones that are going to be afflicted with this disease then we need to tell it how it is. I would start with your cruel family member - I guess we have all come across someone like that - it is ignorance. I think your ear