Here at the 'blues homestead, we have opened all the doorways to accommodate a wheelchair if I have to go there. Converted master bath to shower only, took out the tub. dropped the pan so if I need to later, I can roll a walker or Jerry chair in there. All house facets are single lever, all door handles have been converted to levelers - dead bolts can be closed with a cane. All outside facets are levers and are converted to "cold weather facets so I don't have to wrap them. We have 3 jar and automated can openers of different sizes in the kitchen and two in the studio for glaze jars. Installed a 2nd water heater in garage and raised the floors 2 inches in all living spaces so we now pump warm water through tubes in the floor to help with our feet. Removed all steps on the property and converted all to ramps. 22 to 1 ratio, very gentle grades

Hope some of these ideas help down the road.
Peace
Bluedogs2

Sorry - 'ole blue has refused to take any meds except MTX (and all my pills). Would probably feel better is I did, but between what I deal with and potential side effects, I'll just bump along for now

Bluedogs2

Grandmacm,

I was on Sulfasalazine for three years and had to stop it. Then Methotrexate for about four years before my Rheumy added Simponi Infusions to the MTX.

As far as gardening, are there any neighborhood kiddos, church youth groups, who would help water, plant, weed? I've been blessed to have neighborhood kiddos to help out through the years. Depending on their ages, I pay $6 to $10 an hour.

Any jars that need opening, my husband opens them for me, and then we don't tighten them. I moved all my pans to the top cupboards, so I don't have to kneel.

There are some good websites that offer products to help with everyday chores. I read them, and have my husband or friends make something similar because usually the products are over priced. I wonder if you doctor makes a referral for a certain product that will help you with daily tasks, would insurance pay?

I agree with you, this gets dang frustrating. I wish I had more suggestions for you. As you know, there are a lot of smart and creative people on this board, and they will give you some great ideas.

Hugs

If you have the chance to get on one of the biologics, I would say, jump on it. Methotrexate caused kidney failure for me, and Prednisone caused high BP and other horrible side effects (swelling and overall puffiness). Leflunomide also caused high BP. Just watch your lab results on these meds. Everyone has a different reaction to every drug.

thanks for all those helpful ideas from the 'blues homestead. I'll be doing some modifying in the house and didn't even think about the outside house faucets. I have a large jet tub in the master bath and have thought about replacing it with a walk in tub/shower. I'll have to be looking for things like the different sizes of openers. And I hadn't thought about the steps either. So thank you for the insight. Journeythru, I don't have access to kids. We live very remotely and all the youngsters have grown and gone. So we will just do what we can. I have a 47 year old son with a head injury disability who lives close by on our property and he also can help with some of the gardening at times. I'm currently using my husband to open jars also. And will look for some of the websites, He is very creative and can build most anything given some time. Thanks for that idea. Trooper45, I'm having labs drawn once a month to watch my kidneys and from what I read most all of the RA drugs have some effect on them. Thank you for responding I really appreciate your concern. So for now I've decided to not go on the second drug. I think I can deal with the side effects of another couple of dose increases in the mtx. Again, thank you all. I'm sure that all of these ideas are going to help me along the way.

I was not helped by methotrexate, but once a biologic was added, there was major improvement. It took a while to find the right one.

I bought pull outs for my lower cupboards. It is the type you screw into a shelf, got them at Menards, took a few minutes with my drill. For smaller caps, I use a pliers to open those bottles. I also have levers on the doors, including the exterior doors. I am finding the pull strings for "drapes" getting to be difficult, so I replaced those with shades. It doesn't take as much work for my hands. The home improvement places will cut them to the exact width you need.

And yet some more great info. Thank you RASally and 2leftfeet. Sally, I'm an RN and have no clue why I didn't think about an occupational therapist. They are wonderful for devising exercises for specific disease processes. I will surely look into that. I'm sure it would be well worth the 5 hour drive to visit one. And the cabinet changes are a good idea that I can get after while my hands are still working pretty well. Hugs to you all.

Someone may have said this already but am suffering CRS today. Every cabinet in the house, pantry and studio have Alfa roller baskets affixed on to the shelves - got them at the container store

'ole blue

We built the last house I was in, so we put in the straight handles, as opposed to the round ones. You just have to lean on them, to open them. When we moved here, I found the bedroom door was really causing me issues, because I was using it first thing every morning. Hubby went out to a ReStore, and found a nice straight handle for $5 and replaced it. Most of the rest of our house is open, so handles aren't an issue here. I do have rollers on all the drawers, that was a non-negotiable point.

As for the garden, when I first got sick, I had been growing veggies on the ground, and I simply couldn't do it anymore. So hubby built me a raised bed, to see how it worked. It was great, so he built me 3 more. They are only 4 feet by 8 feet, but I do intensive gardening, and get as much produce as I used to in my much larger ground garden. But hubby builds them so they have a ledge, about 2 feet high, so I actually sit on them to plant and weed. Very comfortable, as long as I get the weeds when they are small, very easy. I have a lot of containers for herbs and flowers, which I plant sitting on the patio. I also have a window box that came with the house, and it looks so nice, and very easy to work in, being waist high. I have hoses on both sides of the house, extra long, as I cannot undo them or do them up either. That way I just have them circled up and pull out what I need. The other thing is I put timers on the hose, so they automatically come on and water the garden. That makes for so much less work. The lawn and many of the beds have inground irrigation, which is so nice!

If your hubby has PTSD, then try to explain slowly to him what you are going through. My hubby doesn't have PTSD, but it still took over 10 years before he realized how sick I was. It was when I had reconstruction surgery, he realized the damage that had been done to me. He is pretty good now. Sometimes he forgets and asks me to do things I cannot do, but I just remind him what I am capable of. Too bad I was such a hard worker for so many years. LOL!

As far as staying on just mthx, why would you want to? I was on mthx for 5 years, supplementing with prednisone and NSAIDS. It was a terrible time, and the pain was a lot higher than I thought. When Vioxx and Celebrex were taken off the market, I went to my RD and complained, and adding a biologic changed my life. I literally was almost normal, except for the previous deformities.

My thought is that you really need to talk about a biologic with your RD. There is no reason to suffer, if you don't need to. As for house renovations, you wouldn't have to do them if you got the disease under control.

Too often, disease control seems to be about pain control, when in fact, it should be about preventing deformities. Taking prednisone and NSAIDS may hide the pain, but it won't stop the deformities. You are new enough to this game, that if you make that your objective, you will have a much better prognosis. RA is so debilitating, and stopping the disease really needs to be the goal. One that I am sadly having trouble achieving right now. But if I was in your circumstances I wouldn't hesitate to take what you need to stop the RA and have a much better quality of life, too!

(Side effects? I seriously have never had a single one that affected me long term. And I have tried a lot of drugs, too!!)

Bluedogs2, that cracked me up. I don't remember the last time I heard someone use CRS. It's the story of my life lately.. I'll get to a container store and see about those roller basket the next time we go north to a real city.
MarleneJ, thanks for the hubby talk. That has been one of the hardest things for me as I need to talk about this sometimes. Soooo glad you are all out there in the netherlands for me. This year we are trying some hay bale growing to see how that goes and we are trellising most of the other stuff. If the bales go well then I may have my son help us build some boxes next ;year. I do have a good watering system set up in the tunnel and have timers on the hoses. I'm really anal about the weeding thing. I go out every morning to weed. They aren't allowed to grow in the tunnel. I also use Preen weed stuff as a pre emergent deterent and it helps keep the weed down some. Love and hugs to all.