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Medical Forum / Diseases and Disorders / Arthritis / August 2006Update: had doc appt
Saw my doctor today, she confirmed I have what is called Zero-Negative Rheumatoid Arthritis. She is putting me on Methotrexate 10mg a week and Relafin and keeping me on the prednisone lowering from 5mg to 2.5mg to see if that will be low enough for me or not. On top of all that is going on having a very bad day. My DH doesn't understand how much the pain can be sometimes and how badly it can get to me and make me fustrated. I do love him but not sure how to make him understand that there are some things I just can't do anymore. One of them is to take my son down the steps. He is only 14 months and since May when everything started acting up I have not been able to get him down the stairs in the morning. I am afraid that I will be walking down the steps and fall with or without him. Now my DH wants to leave me because he can't handle the sudden overflow of things and all I really want from him is his support at this point. Jennifer > > On top of all that is going on having a very bad day. My DH doesn't > understand how much the pain can be sometimes and how badly it can get to me > and make me fustrated. I do love him but not sure how to make him > understand that there are some things I just can't do anymore. Hi Jen: Yikes, hubby wants to bolt, huh? Wowzer ... that must really break your heart. I recall when that happened to me years ago. There were too many straws on my DH's back (like a camel) and eventually the camel's back broke ( he left for 7 months). My OA and clinical depression then just got to much for him to handle. He thought the grass was greener on the other side. It wasn't. It was a blessing when we reconciled and our marriage is stronger than ever. It is amazing how we take our marriages for granted. Some more than others .... quite often the spouse watching the sick person and feeling helpless. Family reacts severely when we become chronically ill. Bottom line - When I came down with FMS/CFS/SS/DDD I gave my DH and family any and all the infomation I could find on my *invisible illnesses* and tried to have an open dialog with him whenever possible. There is a good web site about *invisible diseases*: http://www.myida.org/index.html Also, the Arthritis Foundation has a book written by a husband who was extremely affected by his wife's chronic Illness, "Beyand Chaos: One Man's Journey Alongside His Chronically Ill Wife" http://www.arthritis.org/afstore/singleproduct.asp?idCat=&idSubCat=&idproduct=2746 Yes, it was very hard to ask for help back then. I was afraid to ask and I got angry at myself. Time has healed that part of my life. It is part of the grieving process. Your family, I pray, will adjust and take on more resposibilities, Jennifer. Mine had to. They saw my pain ... I asked for help, I grieved. Life is getting better for me. > One of them is to take my son down the steps. He is only 14 months and since May > when everything started acting up I have not been able to get him down the stairs > in the morning. I am afraid that I will be walking down the steps and fall > with or without him. BTW - your 14 month old can scoot down the stairway feet first and be fairly safe. You go first and watch him. Her? Babies can do more on their own at that age. My youngest son had to as a toddler. Make it a game. They love that. > Now my DH wants to leave me because he can't handle the sudden overflow of things > and all I really want from him is his support at this point. I feel helpless about your situation with you DH. Do you have an Arthritis Support Group near you? Will your DH go to the doctor with you to hear the situation from him/her rather than you. Sometimes just a little nudge from another person will make sense to our family. They might not believe us in the beginning but will accept it from a doctor or nurse. Go figure. I will put you and your little family in my *prayer bubble*, Jennifer. Warm Thoughs and Breezes, Meg Ty, he hasn't learned how to scoot yet down the steps, I have shown him a few times but he still hasn't gotten it figured out yet. He was a bit premature at birth and is about a month behind other 14 month olds. Jennifer >> > On top of all that is going on having a very bad day. My DH doesn't >> understand how much the pain can be sometimes and how badly it can get to [quoted text clipped - 58 lines] > Warm Thoughs and Breezes, > Meg Hey, Jennifer, Meg had lots of really wise words. I just want to add a few thoughts. Now in my case, my arthrtis preceeded meeting my husband so he knew what he was getting into - in fact Newsweek had a cover article on RA about a month after we started dating that he kept for years as it helped him understand what was going on with me. (My dx later changed to PA, but they are similar enough.) He also was able to see how my whole family deals with chronic illness as each of us has at least one chronic illness going on. Still, there are times when he just doesn't want to deal with it because he so deeply wants to "fix" me and there just isn't anything he can do about the underlying disease. It took me a while to get through to him that sometimes a big hug and a little help around the house REALLY is what I need most and how he can help me the most. NOw that he finally understands a big hug really helps me relieve stress, regain courage and strength and generally feel better, he'll stop just about whatever he's doing when I declare, "I need a hug!" because it's something he *can* do. It is so hard to watch someone you love suffer, even more so when there is nothing you can do that directly makes the person feel better. Perhaps that is what bothers you husband so much. I don't know what the best way to address it with him would be, but perhaps if you can get a conversation about that possible desire to want to "fix" things, it will help the situation between the two of you. We've reached the point that I can see it in my husband's eyes when he's wishing he could cure me and I try at those times to thank him for what he DOES do. just thoughts..........  SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare >>> On top of all that is going on having a very bad day. My DH doesn't >> understand how much the pain can be sometimes and how badly it can get to [quoted text clipped - 58 lines] > Warm Thoughs and Breezes, > Meg Jennifer, I'm am so sorry that you are going through this. It is enough that you have RA and your life will never be the same it was. Not bad, just different. But you are trying to make these changes. You will learn to do things differently over time to make do with everyday living. This will take time. My mother had JRA and rasied three children. You will be able to also. Just differently. You are still a good mother. As for your husband. You can try and educate him as much as possible, but that is all you can do. My ex never got it and still doesn't. I have raised a disabled daughter and still need his help sometimes, but is never without him complaining. As far as the stress I've been much better off on my own. My stress level is down and make my pain level down. Don't give up on him yet, Offer all the educational material, take him to your doctor, etc. Then there is nothing more you can do. I wish you the best of luck, debbie m. > Saw my doctor today, she confirmed I have what is called Zero-Negative > Rheumatoid Arthritis. She is putting me on Methotrexate 10mg a week and [quoted text clipped - 13 lines] > > Jennifer jennifer, you've gotten some good advice. i just wanted to add my sympathy. it's got to be so hard for you right now. i want to drop kick spouses who don't understand, but this must be a scary and uncertain time for him, too. i LOVE the idea of having him go to the doctor with you. he needs to hear from someone other than you that your pain is real. by the way, it's SERO-negative RA, which means you don't have the RA factor showing up in your blood. i'm also sero-negative. it still hurts every bit as much! diane Jennifer, I'm sorry but I got a chuckle from zero-negative. It's sero-negative, hon, meaning the blood tests don't show it, but your physical symptoms and maybe your xrays do. It took my hubby having a bulging disk before he truly understood the daily pain I'm in. At first he would never say anything but by his attitude I could tell he just didn't get it. He hurt his back and after about two days he said, "How do you DO this day after day?" From that time to this he watches over me carefully - not getting in the way, but ready without my asking to help. He does all the vacuuming, sweeping, carrying, etc., even with his back. He tells me, "You wanna be out of service for a week? Let me do that." I have to watch over him, too! LOL I'm gonna have to say the same thing the others have.....educate the man. Give him things to read and take him to your doctor. Sometimes you may have to bash them on the head to get them there, but they tend to believe other people before they'll believe us. Hugs - DeeTee > Saw my doctor today, she confirmed I have what is called Zero-Negative > Rheumatoid Arthritis. She is putting me on Methotrexate 10mg a week and [quoted text clipped - 13 lines] > > Jennifer > I'm gonna have to say the same thing the others have.....educate the man. > Give him things to read and take him to your doctor. Sometimes you may have > to bash them on the head to get them there, but they tend to believe other > people before they'll believe us. Works the other way, too. Since we met, Mary has been to every doctor appointment I've had. I introduce her as my "hearing aid" since I have a severe loss. She's witnessed 2 biopsies, several DRE's, knee and sholder injections, everything that didn't involve X-rays/CT/DXEA exams. When we return home, we can compare notes to determine how many instructions I didn't correctly understand. ... Charter member of the Obsolete Equipment Club of America. It does help when you have a spouse that suffers some sort of disability...but fortunately everyone in the world doesn't have one... I pray that your husband "Grows Up" a little...enough to try and find out what your day is like and care enough to learn to handle it... It is hard enough to live with these DD's taking care of ourselves without taking care of a toddler and a husband... You have gotten some good advice here.. In his defense...It is hard enough for us to learn to accept our disease and our limitations...I have FM, OA and DDD...And I still go through the cycle of Denial,grieving, and acceptance...And not understanding...So I know it is hard for someone that doesn't suffer to understand... But I am fortunate..That my husband and my family probably accepts it better than I do... So I am sending my prayers and hugs that your husband will come around...and if he doesn't...Then as painful as it is...The removing yourself from the stress of him not understanding...will probably make your life easier in the long run... Lots of hugs Cindy > Saw my doctor today, she confirmed I have what is called Zero-Negative > Rheumatoid Arthritis. She is putting me on Methotrexate 10mg a week and [quoted text clipped - 13 lines] > > Jennifer Oh Jennifer, I am sorry you are going thru this. I wish our spouses would get with the program. It is not like we want our bodies to be like this. We would change in a minute if we could. None of like being like this. I can understand your concern about bringing your son down the steps. That would be scary. You just never know. I hope the meds work for you and that you get better quickly. SignatureLove and hugs Jo (\__/) .~ ~. )) /O O ./ .' {O__, \ { / . . ) \ |-| '-' \ } )) Warning: squirrels. .( _( )_.' '---.~_ _ _& > Saw my doctor today, she confirmed I have what is called Zero-Negative > Rheumatoid Arthritis. She is putting me on Methotrexate 10mg a week and [quoted text clipped - 13 lines] > > Jennifer I would like to thank everyone for their advice, I have actually let my DH read a few of what you have said. Because of the 2 kids he has not attended a doctor's appt. I go back in September and maybe I can take him into going with me. Maybe that will help him understand what is going on and actually how much pain I really am in some days. Today actually has been a good day for me (Friday). I have been able to do more then I have in the last few weeks. In fact I've been almost pain free today for once. Have a little bit of pain in my fingers but otherwise doing good. Jennifer > Oh Jennifer, > [quoted text clipped - 24 lines] >> >> Jennifer If you have a local arthritis organization they may teach an Arthritis Self-Help class- which covers many important topics on living with arthur. Ours are 6 weeks of 2 hour classes (1 per week). You get a wonderful book, great support and best of all your hubby could attend free. (cost is $35 and you get the book) You both would learn and he may feel more comfortable with what is happening. Mine was freaked out too initially- didn't take it seriously. We have both learned and survived. Good luck, I'll keep ya in my prayers. Kate > Saw my doctor today, she confirmed I have what is called Zero-Negative > Rheumatoid Arthritis. She is putting me on Methotrexate 10mg a week and [quoted text clipped - 13 lines] > > Jennifer |
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