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...
So, just a vent this morning. I needed to get this off my chest to someone who can understand my frustration.
Went to the In-laws yesterday, it is rainy and damp here, and the day after my Enbrel shot, so Saturdays usually aren't great days for me anyway.
My Father in law and I were talking about health insurance and how I am waiting for the plan changes for next year so I can figure out which one I can afford that won't put me in debt up to my ears before I reach my out of pocket maximum. He has decided that I should just apply at the Marketplace and I will just be able to get a better plan cheaper. I tried to explain that it doesn't work that way and I will not get any subsidies due to my employer offering an "affordable" plan at no cost. The "affordable" plan is just not one that will work for me as it doesn't cover Anything until I reach $6350.00 in out of pocket. So far this year the insurance company has already paid in excess of $40,000.00 in care costs for me.
Then he tells me that I need to find a new doctor because the one that I have apparently doesn't know how to cure me, so I must have something else wrong with me and this guy is just taking me for a ride. Really?
He proceeds to tell me that I need to just stop taking my medicine that it is probably not doing anything for me anyway. I explained that I have tried once to come off the Enbrel, I get non-functional fast, and one other time we tried to take it to once every 10 days instead of once a week and I can't do that either.
I don't know how to get them to understand. They have been here since the start of this, it is not like I just walked into their lives last month.
He just says that arthritis shouldn't be like this. When I explain that it is not just arthritis, they seem to shut down.
They don't understand that the meds that I take allow me to continue to work 45 - 50 hours a week. So if I sleep the weekend away or stay on the couch because my body is just done it is something that I am ok with.
The conversation ended when he said, so you have this arthritis thing and you have breathing problems what next? I told him next is a higher chance of Heart Disease and it starting to affect all of my internal organs; they can control this, they can't make it go away. He just looked at me.
I just don't know how to deal with them. Sometimes I think the Hubby understands, other times not so much.
We are going to a concert tonight, I have been looking forward to this for months. I took tomorrow off of work to recoup. The Hubby says, "Why do you need to take a day off of work? You will be home by midnight." Again Really? It is going to be 6 hours walking up and down hills and on my feet. Oh, if looks could kill...
So I just needed to vent. Thanks for listening.
Kim
Went to the In-laws yesterday, it is rainy and damp here, and the day after my Enbrel shot, so Saturdays usually aren't great days for me anyway.
My Father in law and I were talking about health insurance and how I am waiting for the plan changes for next year so I can figure out which one I can afford that won't put me in debt up to my ears before I reach my out of pocket maximum. He has decided that I should just apply at the Marketplace and I will just be able to get a better plan cheaper. I tried to explain that it doesn't work that way and I will not get any subsidies due to my employer offering an "affordable" plan at no cost. The "affordable" plan is just not one that will work for me as it doesn't cover Anything until I reach $6350.00 in out of pocket. So far this year the insurance company has already paid in excess of $40,000.00 in care costs for me.
Then he tells me that I need to find a new doctor because the one that I have apparently doesn't know how to cure me, so I must have something else wrong with me and this guy is just taking me for a ride. Really?
He proceeds to tell me that I need to just stop taking my medicine that it is probably not doing anything for me anyway. I explained that I have tried once to come off the Enbrel, I get non-functional fast, and one other time we tried to take it to once every 10 days instead of once a week and I can't do that either.
I don't know how to get them to understand. They have been here since the start of this, it is not like I just walked into their lives last month.
He just says that arthritis shouldn't be like this. When I explain that it is not just arthritis, they seem to shut down.
They don't understand that the meds that I take allow me to continue to work 45 - 50 hours a week. So if I sleep the weekend away or stay on the couch because my body is just done it is something that I am ok with.
The conversation ended when he said, so you have this arthritis thing and you have breathing problems what next? I told him next is a higher chance of Heart Disease and it starting to affect all of my internal organs; they can control this, they can't make it go away. He just looked at me.
I just don't know how to deal with them. Sometimes I think the Hubby understands, other times not so much.
We are going to a concert tonight, I have been looking forward to this for months. I took tomorrow off of work to recoup. The Hubby says, "Why do you need to take a day off of work? You will be home by midnight." Again Really? It is going to be 6 hours walking up and down hills and on my feet. Oh, if looks could kill...
So I just needed to vent. Thanks for listening.
Kim
My mother retired from nursing about 20 years ago - she really thinks the drugs I am doing to my body is evil, my Dr should just do nothing for a few years and I would probably go into remission. The Dr should just prescribe predisone for 2-3 years, that probably would cure me. As far as the Celebrex that I do take occasionally, I should stop that right away, it is going to harm my stomach. Sure. That all sounds right.I tell her nothing anymore.
My husband is supportive in the fact that if I say I want to get something, because it will be easier for me to do something, he is all for it. But, he does not want to hear me talking about it.
Have a great time at the concert tonight!!
Please don't take this the wrong way but that is plain ignorance on their part. They have what I refer to as "open mouth insert foot".
All it does is cause you more pain & frustration.
I've read & heard is so many in your shoes. People believe what they want to believe & do not like when they are wrong or can't control things around them.
My family will down play my situation. Run away or ignore unless I'm so bad it's not avoidable. Should not have to be like that but it is. Can make me feel depressed, alone &/or hopeless. After all these are the ones that "love" us.
It's not like you ask for this.
You obviously work long hours.
Your husband is lucky your strong & can manage. The least the family can do is attempt to understand & educate.
With that said I'd probably tell them just that.
Until you know what your talking about it's best to say nothing.
Heck I'd probably print literature up & hand it to them.
If you have to live with & deal with the family then may be worth it.
I'm so sorry with all I've said it's still very hurtful to not have the understanding & support.
You know your husband may learn if he goes to an appointment or 2.
Before my DX with RA I had spinal injuries. My doctor told my husband & me I would live in pain the rest of my life.
Even with that said my husband refused to believe there was not a "cure". Deep down he knows but it's just to hard for him to deal with. I'm not fixable & he cannot do anything about it. So he avoids.
I was grateful the doctor at least attempted to explain & inform him.
Life is hard no need for added stress.
I truly hope you gain some degree of understanding.
In the mean time try not to let ignorance get to you to much.
Sammy
I think the main reason I come to this forum is to reassure myself that I am not completely alone in all I go through, because nobody I know gets it either, and I live alone. At least, living alone, I don't have to explain to anyone else why I want to lay on the couch all day before another week of barely making it out of bed and dragging myself into work.
Thoughts I've had this weekend: "This is no way to live." "I wouldn't care if I died right now." "How am I going to take care of myself if I can't even get out of bed?"
Don't worry, I'm not going to jump off a bridge, but I have had thoughts like that through the years as well.
Let's all hope for a better tomorrow.
1. Bombard them with literature from RA sites. Hopefully they will read it.
2. Ask for their help understanding the disease. Play stupid and ask them to help you understand all your options with the disease. Also Stop calling it Rheumatoid Arthritis, Call it Rheumatoid disease. Most people get stuck on the arthritis word. They all have it in their hands.....
you can not choose your family
you CAN choose, knight, activate and hereby bequeath with gratitude, your champions.
gravitate towards the champions, gravitate away from those that leach joy out of your soul (don't forget to give back to your champions which I am sure you already do :)
Depot
I just insist that I am tired and I'm not going anywhere.
Lynne
I just get so frustrated with them. My Mother in Law is one of those who has actually told me, "My pinky was starting to get crooked, I just worked with it for awhile and it is straight now, you should just move your fingers back into place a few times a day, they will straighten out,"
OMG...
When it gets to the point where I am just done, I just tell the Hubby that it is time to go, I need my meds and they are at home. He gets the hint. As soon as we hit the car he asks, "What did she say this time?"
On a brighter note, Rascal Flatts was amazing last night!
I am paying today as it rained on and off and was down in the 50's here last night. Outside venues in Michigan are always a gamble in September.
Time to suck it up today, my Munchkins (22 and 24, so not so much munchkins anymore) are coming over for dinner tonight.
Again, thank you for all of your thoughts and advice.
Much Love and Appreciation,
Kim
My Bff's husband has had RA for years and my daddy had OA.... (which as debilitating for him but nothing like the RA).... I just couldn't understand WHY her husband couldn't do things like my dad... I thought he was lazy, a big baby, and using it all as an excuse... THEN... I was diaged w/ RA.... what a shocker for me.
5 years later I just know now that some ppl will NEVER get it.... I just do not bang my head against the wall any more trying to make them understand...Ii avoid conversations w/ ppl that do not support me.
Enjoy the concert...
My MIL is walking back to the car with me & the concrete stairs are not my friend. Not a single ramp at this 10yr old high school. Not sure how they got away with that. Hubs was not happy. My knees have joined the party recently so walking is officially a nightmare.
She asks me what it is I have again because my husband couldn't explain it to her very well. (He can I've heard him she just isn't one who listens to something that doesn't effect her directly. One of the reasons I avoid her if possible.) She's had fibro for 20yrs so you'd think she'd try to understand someone else's pain/condition. I explained my different AI issues. She proceeds to say I'm just eat up with arthritis aren't I? Umm not exactly the same but I wasn't going to argue. I told her RA was different than OA etc. She then says "if you say so but I think they're the same thing". I just kept walking to my car, got inside & closed the door. I did get out & say my goodbyes when my FIL, hubby & grandson arrived. I am a lady not a brat. Usually. Lol
I don't have time to stress over her & her willful ignorance. She's just a big pile of issues that I ran out of patience dealing with yrs ago. I only see her when absolutely necessary. I even gave up hosting Christmas. But I still do Thanksgiving & my son's birthday. I just make sure I invite some close friends as well so I have other people to converse with that don't irritate my last nerve. Since she likes to be the center it drives her nuts and I'm ok with that :)
Take care & don't let them stress you out. It really isn't worth your time or stress levels increasing. Being polite is necessary but a close relationship with vampires is totally not. Just my opinion.
I usually just say rheumatoid or autoimmune disease that's attacking my body from the inside out too. I try not to confuse them with arthritis if I can help it. That makes the convo take a left turn that I usually can't get back on track.
I hope dinner w/your munchkins went well. My stepdaughter, who lives with the inlaws, was absent because of a migraine. Which meant the 5mo old grandson was absent too since she's nursing. It would've been nice to see them but I did get grandson #2 for awhile. That almost made up for it. If only I could bottle a 2yr old's energy!
Emerald
I think you do well you make sure you protect yourself from situations that will bring you more stress which leads to inflammation which leads to more pain which affects your ability to participate in your own life.
Pamper yourself and do what you love to do and be with people who lift you and who need you. This will do you more good and it will help your RA.
Learn a new craft and make something beautiful for the house or for yourself. It's okay to help yourself feel better and don't feel guilty if you can't go to the "family roast". You can always gently and respectfully decline and meet at another time soon. Keeping your RA in check also means avoiding situations where you will be hurt emotionally, which can cause a flare up
I am so very happy we have such good people in this group and I am glad that we have each other to understand the road we are on.
Take care of you
Blessings
My husband has been very understanding so I am lucky. Feel pretty good most of the time but on my off days he leaves me to myself which is the way I like it. He also goes to my rheumy appointments with me so that helps.
I have quickly learned that if I say "treatments" instead of "medicines" things are perceived differently. We do take treatments to fight this battle so I prefer to use that word. I seem to get a little more understanding when I use that word. I also then don't have to really go into any explanation. I don't really feel like having to explain myself all the time and I refuse to do so. I was diagnosed with Lupus at the same time as RA. I now take Otrexup (MTX) shots and Enbrel shots each week. Very few people know about what I am going through and it is because I don't want to deal with their attitude when it comes to "arthritis." Petty I know but I am short on patience anymore.
Good luck to you. Don't let them bother you. I only deal with my MIL when I absolutely have to and I haven't had the occasion to in 4 years now. Too much stress.
Dana
I hate that site :P webmd. Its like a hypochondriacs best friend.
he and i dont talk much becuase of it.
So i simply go with the generalised "I'm fine." Hell. I even say that to people who i think get it because frankly, it can be confusing.
My school mates dont get it either, and really not so much anyone else. I think until you are in the shoes you cant completely get it. My mom and stepdad try to understand as best they can. I mean we've worked out a system where i get one chore a day but if i dont complete it..no big deal. It will be there tomorrow. Its a process to get what people understand or just are completely oblivious that there is a distinct difference. And the best we can do is offer them some insight in our experiences.