.. to your life since being diagnosed with RA?
Being newly diagnosed, and having gone through a terrible "introductory flare," we are contemplating moving closer to family next year. They live 12 hours away and we have two young children, ages 1 and 3. My husband has family here, but to say they are not very compassionate or helpful is an understatement; whereas, no one gets what I'm going through quite like my mother. I think she knows more about the disease than I do after researching it, and if I've learned nothing else with all of this, it's how important it is to be surrounded by people who understand, who care, and who want to help in any way they can.
I was wondering who else has made a major change in their life such as this, and how it's worked out for you?
GingerR
Ginger I can totally relate with not having people around that can truly understand. Hubby is trying more, but at first he was totally blocking anything out that I was saying. (If I give her compassion it will play into the pain and make it worse) We have worked on that for about a month.
I guess I am still at the discovery stage of this disease. I would love to be by someone with some understanding. I used to be a full time Elementary School Teacher...now I sub about twice a week. That is all I can do. I hate to say it, but it is. Also, I have to be ever mindful if I exhaust myself today it will take at least two days to make up for that. Sometimes it is worth the risk, other times it is not. I have also made the realization that outside people do not deserve the little energy I have as much as my family does. I try to do little things for them all of the time. So, I guess my priorities have changed toward what I accomplish and who I accomplish it for.
This change is hard and very frustrating. I told my husband after a two hour nap yesterday...I could have just turned over and gone back to sleep...I am so tired today. He asked why didn't you? Guilt!!! I should be doing something. Still learning!
Dear Ginger, I think Shelly touched on what we all feel that 'we are still learning'. This is such a confusing disease(one minute we can feel great then next minute we're in bed suffering) this is so hard to EXPLAIN to other people. I'm so glad you have your understanding mom, but I can relate to the huge distance between you. we are 8 hours away from my son and it is a bad drive this time of year (snow and fog...). I understand, also about the inlaws not 'getting' it. as I have the too. My DIL thinks if I just eat more broccoli or something I will be fine! Huh!
Adjusting and changing our lives never ends. We don't even know what we used to be able to do that we won't next week. It is a struggle. With children so small I can understand your fears for the future.
I sure hope the medications help you as there are so many new treatments now (I've had this for 15 years), that can really make a difference. I think there are more doctors, also, to help us? I HOPE!
Goood luck with this and please know people on this forum understand and hug your little ones (and your mom) for me. I sure hope you can move closer to your mom, she sounds like such a dear.
Lynda
Shelly, that sounds just like something I would do - getting up from a nap out of guilt, and exactly how my husband would have responded! He too was, at first, reluctant to acknowledge that what I was feeling was anything more than just regular, run-of-the-mill arthritis. But he read up on it a bit and his attitude has really changed, and he's been much more helpful too.
And Lynda, it is very confusing, so unpredictable, and ugh- so hard to explain. I am very lucky to have my mother, and that my husband is considering moving close by, even if it means moving away from his family. Now, go eat some broccoli.
for me moving closer to family was the best thing i did. i did it however after i made sure i had a secure job there.
the most impoirtant thing you can do is to get with a financial planner and get your finances in order for the future
Hi Ginger,
I don't know what your diagnosis is mild, moderate or severe, but you may want to give your drugs a chance to kick in before you make such a major move - especially if you aren't in the severe category.
I have a mild/moderate diagnois and it took a good 6 - 8 months before I really felt the positive effects of the MTX (that included a dose increase from 15 mg to 25). I went from a slow shuffle/walk to now being able to run, hike, bike -- to do anything I want. Yes, I still feel the RA once or twice a week, but I'm glad I didn't make any major life changes during that first flare.
As for finding people who understand, I'd also recommend a RA group if there is one nearby and hanging out here on AI for people who know what you're going through.
All the best,
- Joy
Plaquinel is a very light medication. Speak your rhuemy about adding additional DMARDs that just might make a huge difference for you.
It is always a good thing to live close to your best support system if you can make the financial side of life line up OK. Definity something to consider but probably nothing you need to get in a panic about.
I've been riding this RA roller coaster 30 years and I still don't have all the answers except that this disease is highly variable - not only when you look at others with RA, but looking back over my own medical history. There have been times when I felt normal, and times when I have been very handicapped.
Welcome!
Ginger - I also moved closer to my family since I was diagnosed with RA. It is great for the holidays. The one thing that makes me sad is as my disease progresses, I know they are worried I will become a burden. That hurts but who can blame them. It does not sound like your mom will be that way.I have mild/moderate RA, and I dont live near my mother either. However my son (18), hubby, MiL and colleagues at work are all fantastic. We have agreed that if they want to know how I'm doing (if they cant tell by looking at me
I'm coming up to a year since dx and a good friend of mine, Cordy you know who you are, told me to take each day as it comes... and I do just that. It makes the variables of the disease easier to cope with. Learning to listen to your body is another must. And as Jay says, if you are ever needing to vent, moan etc your family here are generally always about.I changed from working on the floor (mechanic) to going into management. I simply can not do the physical stuff anymore. I guess I am in the moderate RA catagory. My wife tries to understand how I am feeling, and my family asks how I am doing but in a conversational sort of way. We are close to both of our families about 1 hour in opposite directions. We do talk about moving to a Ranch style house currently in a 4 bedroom 2 story.Less partying, no more all-nighters. I used to go out once a week or so with friends; I used to occasionally stay up all night long reading or working on projects, from programming to sewing to woodworking. Now I'm rarely up past 11:00.
i guess for me its more about scheduling my day- planning a nap during the day, no more going out all night, no parting (for me recently no drinking for my 21st birthday has been an issue) or staying up past 11, taking a shower at night and getting all the stuff for the next day ready the night before so i could just focus on getting up and out of my house, setting my alarm an hour earlier than i need to be to give my body enough time to "wake up" because just shooting out of bed doesn't seem to work, planning when i'm going to eat compaired to when i get breaks at school and at work so i can take my meds.
I use to be very social but all my friends were outdoors people - mainly hikers. I have become homebound and a recluse. Thank God I have a big picture window in front of my recliner. At least I can watch the weather. I watch tv and never used to. I put up with more from my caretakers as I know I need them. I appreciate my daughter more. I really appreciate good days with low pain. I had two days that I could completely walk. I was elated but I took it for granted. I thought my Lyrica was making able to walk for good but the third day I could not walk again. I wish I would have gone somewhere. At least now I know the possibility is there. I am more spiritual. My family means more to me. I am obsessed with my pets. I don't cook or clean (that is a good thing LOL ) I shower way less. A good conversation that does not include talking about RA is precious to me