Hi, I have had Ra for 1 1/2 years. My household is mostly men and I don't feel like I get any support.It's kinda like " I've know people who has arthritis all their lives and they keep on working." I tried explaning RA, but I fell like I am butting my head against a wall! Has anyone else experinced this, any recomendations? I feel crappy most of the time and I have gained about 20 pounds. I was on Hummira for 2 months until my insurance decided they won't pay for any RA medications.I can't afford the injections on my own, so I am only taking Methotreax. Katie
Sorry that you are having such a hard time.....My husband is very supportive...so are my daughters and thier families....problem is NO ONE WHO DOESNT HAVE THIS GOD AWFUL DISEASE will EVER EVER understand....If you down loaded any info would they take the time to read it.......At least you know that this group of people do understand......Did you have an appeal proces through your insurance company....if they still reject....alot of drug companies will work with people to get them meds at a much reduced cost...you will have to contact the drug compamy yourself though....Good luck.
Hi Katie! With the Humira, call this number 1-800-4HUMIRA and find out about being qualified for their drug assistance program. They dont have specific qualifications on income but most of the time if your insurance will not cover it they will find a way to help with getting you the drug. They are all really nice over there. Thats what i do with my Humira. A lot of the drug companies are doing that now. If i remember correctly if the drug is generic theres not much help there but there are a lot of companies that have precription programs that will get you the drug at a discounted rate. Also, with your family, go to www.butyoudontlooksick.com and print out the spoons "story" it is a great way to explain how you are feeling. The story talks about Lupus but it also is exactly how we are feeling day to day. I can get you another story about what RA feels like too if youd like just PM me. Hope things work out Shannon I would print out copies of what RA is and post in all over the house. They might not read it, but just the point of them having to look at it every day will help get the point across. Make sure you are familar with key items and every time they say one of those stupid comments, you point out on the official information the correct answer. First, RA is not OA. It is not the "wear and tear" of bones and joints getting older. That is what they are referring to even if they don't know it. It affects your body on a systemic level, which means that it is not just the joints, it can be your heart, your lungs, your eyes... And, if it is not properly treated, you will either be permanently crippled or you can die from complications of the disease. Lots of people don't want to mention that. But it is the truth. It takes careful, constant management and lifestyle changes to keep that from happening. It is not the same thing. I have OA and RA. They can surgically repair the OA. The RA, not so easy. Educate them and you don't have to be nice about it. You are sick. You've had to face it and so do they. That's it. It's time they grew up and quit acting like little boys.
A year ago I had to sit my family down and state what I can and cannot do (I also live with all males) crying the entire time and when I got specific they changed a lot. They still forget sometimes but informing them how they could hurt and how they could help really changed some things. Some things never change but my life is much better with their help. I'm not sure that they totally understand but they are getting there. When I am really swollen they can see and I make sure to show them what RA does to me. I'm sure your men love you and it is hard for them to understand going from supermom to, well you know. Tell them very specifically what you cannot do and the understanding of RA may take more time but anyone can understand "I cannot do this anymore!" Then there is the other side of the coin as if I can once in a while do something my men keep on saying "I'll do it" and once in a while I like to do something that most of the time I cannot do. If I don't know when I might be able to do more how can they know so I have found that it comes down to specific communication. Take care. Sometimes in life you have to demand support and respect. This may be one of those times. Take the above advice to heart and help them understand. It's your health and life and you deserve support so that you can live your life the best you can. It will make everyone happier. I know it's just one more thing to put on your to do list but it will make life so much easier. Oh, I love that one. That is cool!!!!! I also make a point of keeping my kids informed of what I am going through. We have an agreement that I will not gloss over the ugly parts or keep things from them. It's been a little easier with my kids because they've seen me hospitalized and thrown off work more than once with this. Now friends are the hard ones. Think as RA as a sifter. You throw all your family and friends in there and the ones that are still there, you keep and nourish. The ones, like your husband and kids, you educate so they stay keepers. It is hard. But just be stubborn. This is a life lesson that they need to learn. You have to face the fact that they have this illness and there will be no slacking from the sidelines.
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