Rheumatoid Arthritis (RA) - Introduce yourself and meet others

My doc wants me to take embrel. It is over $1700. I can not afford that. What to do?

I am an 82 year old retired teacher who spent most of my life in northern Labrador when I started teaching Inuit children mostly at Nain. I was in the U S Army for three years, spent mostly at the Arctic Test Center in Alaska doing research on frostbite and chilblain. I believe my situation started from skiing and snowshoeing a lot when I was younger and frostbiting my feet many times when I didn't head home soon enough.
Over the years I had arthritis in different parts of my body after falling when jogging in the rain and slipping on grass and hitting my elbow on a rock. I fell later at my cabin and had a concussion that was followed by all symptoms of parkinsonism that lasted for around 5 months , slowly recovering.

I think my present condition started around two years ago with neuropathic ulcers on my feet, mainly toes. The ulcers have flared up with bleeding periodically. I wore oversized shoes, and lastly boots four sizes too large, wearing them with thick wool socks. They aren't too wide, and give my toes free rein. This has helped a lot to reduce the neuropathy. If ulcers break open, I clean them with rubbing alcohol and put a mild antibiotic and band aid on them for no more than three days. Every morning I rub my toes with Jojoba oil a pen-friend sent me and the rest of my feet with Vaseline Intensive Care. I did go once to the emergency at the hospital here . The doctors prescribed a strong acid antibiotic that caused the skin to peel off my feet, so I stopped using it. I told them that I thought the problem was from frostbiting my feet. Later I saw on line that my feet were identical to a photo of neuropathic ulcers on the feet of someone with diabetes. I went to the pharmacy where I now live in central Labrador and was given a blood sugar testing kit, thinking I might be diabetic and not damaged by frostbite. My blood sugar level was shown to be normal.
I have symptoms of R A. My eyes are causing me increasing problems. I have struggled with events in my life resulting in depression and anxiety. These seem to follow flares with the R A.
This psychologist with the Geriatric Outreach Program in Ottawa, when I went down there to help my son, wanted me to go on drugs for depression and anxiety, but I didn't want to do that. I think the mind is the best way to deal with issues with the mind. I later read certain drugs for mental issues can interfere with drugs for R A.

I have lived here for over three years in a shed on one of my son's land. I am happy as the storage shed I live in has a wood stove, and I feel like I am in the cabin we built up north. I went out to check to see if some ravens that I have been feeding came behind my place to eat. I slipped on the icy snow. I hit my back on a wooden support for a lean-to covered with a tarp. This resulted not just in a sore back but later with pain in my arms and shoulders, legs, places I didn't even bump. I think this is an aspect of R A, as it goes where anything is not strong and makes more trouble, as with my eyes. I am getting very sensitive to bright light. My daughter sent me good clip-on sunglasses. I think before that a lot of issues were taken on by the family as a whole, even the extended family. This seems to have been eroded by the decline of the family farm. The nuclear family resulted in the scattering of family members. Still friends can be a true family.

I find that I get tired very easily now. Before I never fell asleep except at night. Another issue is the dysgeusia. This seems to follow with erratic flares with RA. Food that can taste alright can the next day taste rotten, and vice versa. Two foods that taste alright by themselves can taste rotten together, and the next day taste all right. Favorite comfort foods can be just the opposite with no warning. It seems no place in the body can't be affected by issues in the autoimmune system. My schools teaching or substituting for 46 years has made me very patient. I am now actually more at home with children than adults, although I rarely see any. I haven't seen my grandchildren for three years. The R A has taken me to a totally different level. The depression seems settled on going back years and years, even to my childhood, remembering every detail,, where I should have stood up for myself, but didn't. Now the people I should have stood up to are gone. I think this has been a factor in my R A experience. When people force you into a situation where you can't be yourself, it seems something has to happen and the autoimmune system is just waiting to "open the door" to what really were unaddressed issues. Then neuropathy and R A are let loose. I still don't regret what I have done, but loyalty and perseverance have very dark shadows. It doesn't seem forgiveness for others, or even oneself can change things. We can't change the past. We do need to find healthy way to lives on into the future. Wanting to die is not a solution, as it goes on to be falling out of the frying pan and into the fire.
I have feeders for the birds and squirrels. The little chickadees eat out of my hands. They always give me comfort. There are all different forms of medicine. We have to make an effort to find them.

@kstar077 I know medicines are way too expensive but the drug companies do want to help.
Check out this link and call the company to see if they can help.
https://www.enbrel.com/en/financial-support
Will you let me know what you learn?

I’m so glad that you wrote and gave us an explanation of your long experience with RA. And you are very articulate. You have suffered for a long long time with the RA and all the falls and such that you have had. How are you now? Hope you will stay close to the group it’s a great group of people. I’ve learned a lot.

"Thank you for your support and kind words.
It seems that with R A, that I am a child again trying to make a sand castle in very dry sand. I can call on my imagination to overcome reality. There is no clear sense of any concrete progress as much as continually on an ever changing battlefield. I had my eyes checked and have new glasses, but my eyesight is digressing. I can see that going online and texting on my phone are a factor, but there seems to be relationships with different things that don't really offer clear ways to combat them. I was out walking on a trail in the woods to refill some bird feeders I have out there and with no warning fell on my head. I didn't have any chance to put out my arm in time. I just drove my head into the mud and grass. I felt my neck starting to bend to the breaking point and then stop. In late fall the ground would have been frozen. I think that I would be in for another concussion. Now with R A, when I slipped on some ice and hit my back, it felt like my back was welded into a solid mass, and then the pain came out in my arms, like my upper arms were nailed onto my shoulders. It seems with R A, my body is not reacting how it has most of my life. Before I would take illnesses on with a clear motive and plan to overcome the damage. With RA, It seems I am wrestling with some invisible opponent, where what I seem to be engaged in has some sort of gap with what is happening with my mind and body. I am accepting that I have to confront depression and anxiety, but what I have done before is now disconnected and there is no sense of progress. I work on building up confidence to do things I did before, but I somehow feel too disconnected in myself to take them on.
( to be continued)

For most of my life I was able to go on without any recognition and support. I was basically searching in art without any discouragement that it seemed no one was interested in what I was discovering. My high school English teacher encouraged me to write poems, and that was enough to go on writing over a thousand poems over 60 years with no real interest in publishing anything. What happened later was that a group of writers in St. John's, Newfoundland wanted to produce an anthology of poetry from the province and wanted to have representation from Labrador. They contacted me somehow and asked me to send some poems for their consideration. I did, and there was one poem that they rewrote as if I was a Hippie, that I was to agree with, if not, it wouldn't be included. I loved being a father and a school teacher, and had no desire to be an insatiable Hippie. I refused, and the poem never appeared. Years after that I never even considered trying to publish any poems. I bring this up because where before I would just forge ahead with my painting and poetry, totally indifferent to any support or interest. Now with R A, I just can't do that. My life seems in every way a rejection. I am trying to adjust my painting with my shaky hands to a more impressionistic style.

Just how do we face this kind of reaction to R A? They say R A is linked to anxiety and depression. I wonder if R A produces depression and anxiety or anxiety and depression produce R A.

For most of my life I was able to go on without any recognition and support. I was basically searching in art without any discouragement that it seemed no one was interested in what I was discovering. My high school English teacher encouraged me to write poems, and that was enough to go on writing over a thousand poems over 60 years with no real interest in publishing anything. What happened later was that a group of writers in St. John's, Newfoundland wanted to produce an anthology of poetry from the province and wanted to have representation from Labrador. They contacted me somehow and asked me to send some poems for their consideration. I did, and there was one poem that they rewrote as if I was a Hippie, that I was to agree with, if not, it wouldn't be included. I loved being a father and a school teacher, and had no desire to be an insatiable Hippie. I refused, and the poem never appeared. Years after that I never even considered trying to publish any poems. I bring this up because where before I would just forge ahead with my painting and poetry, totally indifferent to any support or interest. Now with R A, I just can't do that. My life seems in every way a rejection. I am trying to adjust my painting with my shaky hands to a more impressionistic style.

Just how do we face this kind of reaction to R A? They say R A is linked to anxiety and depression. I wonder if R A produces depression and anxiety or anxiety and depression produce R A.

I’m so glad that you wrote and gave us an explanation of your long experience with RA. And you are very articulate. You have suffered for a long long time with the RA and all the falls and such that you have had. How are you now? Hope you will stay close to the group it’s a great group of people. I’ve learned a lot.

It seems dysgeusia for me is linked to R A. It is constantly changing. Something cooked exactly the same way one day later can taste rotten, and then in a few days taste alright. Right now my favorite thing to eat is frozen blueberries. I find that food is more edible either very hot or very cold. This seems to fool the dysgeusia reaction.
After my fall before at the cabin and the parkinsonism that came several weeks later, I found it was more manageable than R A, as I did slowly improve. I had been jogging for around 40 years, and then I couldn't even walk without dragging one foot. I often fell in the ditch along the road. I went down out of sight to this sandy beach and tried to run, falling onto the soft sand. I was happy having given up appearances. I did slowly increase my time hobbling and not falling. ( to be continued )