Rheumatoid Arthritis Patient Calls Out to Churches & Communities

During my life, when I felt healthier, my mother was very sick with Rheumatoid Arthritis. Often she was in bed or just rocking in her rocking chair. I remember the bad times and good times. One of the bad times was being dropped off with my sister when we were in our early teens. We did what we always did when we arrived at her house and ran into the kitchen to see what was in the refrigerator. Was there bread? Cheese? Crackers?  Were we lucky enough to find peanut butter? Are we extremely lucky to find jelly too? She was on disability and food stamps; contrary to what others may believe it is not a living and far from it. It was never a surprise to find her in bed, which was pretty much the norm with her struggle with Rheumatoid Arthritis. It is strange; I always thought it was her bipolar medication that kept her in bed, so yes I was in total shock to realize how hard the fatigue was from the Rheumatoid Arthritis. Anyway, this day was different, she called out from the bedroom that she needed the phone. We did what we always did and helped her when she needed it. But this time I could hear her telling someone she needed help before she hung up the phone. Sometime later the paramedics showed up to help her. I could hear them commenting that she had been there for awhile because the bedding was so soiled. I can’t say at that age I completely understood, but as an adult suffering the pain she felt I can understand.

Sometimes those flashbacks of what she went through during my own pain can lead to me crying and others may not understand. I am not really depressed, I may seem a bit crazy, but I am just shocked and fear that unless others learn of how hard Rheumatoid Arthritis is more this type of suffering will continue. The need for better care for patients that live alone needs to be addressed. Healthcare for patients living alone should include phone calls and visits by nurses so they can be sure the patient gets help when they need it.

What does all this have to do with churches and communities? There were also other times around Thanksgiving and Christmas that my mother would worry some and then light up with such excitement. The worry would start before the holidays as she would be hoping that church would show up with that special basket that had a turkey or ham and all the fixings. She would wonder what fixings would be in the basket with the turkey or ham. What would she do if they did not show up? If they did, would she have stuffing? Potatoes? Corn? After Rheumatoid Arthritis hit my mother I do not remember her making it to church often, but somehow those church members always knew how to find her. Maybe she signed up even though she couldn’t walk in the door, I don’t know. I just know I will never forget her excitement or her appreciation when they showed up to give her something to help her feed her family a traditional meal during the holidays. She never expected them to show up, but she surely hoped they would and was very appreciative when they did.

So on World Arthritis Day, to those churches and community members that are strong and able, please find those patients that cannot afford that turkey, ham or fixings, please keep searching to find them. I know they really will appreciate it, even if they cannot walk through that door for church or to be that productive member of your community. Maybe find out if they are able to cook that meal, if they able to join you for dinner, or if they need you to just bring them a plate because they do not have the strength to join you for the day. Rheumatoid Arthritis is a very draining disease, the fatigue is very hard as well as the pain and stiffness, which can hit at anytime. One minute we can be fine, the next we can be in pain or wiped out.

Please hear my call out and donate to Rheumatoid Patient Foundation so they can get the changes we need to survive this hard painful and draining disease. We need this organization for patients by patients to have the funds needed to make a difference in the treatment of this disease, treatment which is far from perfect.

Rheumatoid Arthritis patients here is another song to help lift you up during your pain. Remember we need hear your voice, even if it is just by clicking Like or Retweeting on Twitter what other patients are saying with #rheum. Even that simple thing will help your voice to be heard, search engines like Google see that and it will help your voice be heard even when others are writing it out for you.

3 Responses to Rheumatoid Arthritis Patient Calls Out to Churches & Communities

  • Annette says:

    The good part of the story is that the help from churches and the community made your mom happier some of the time. I read that fewer people are volunteering these days. Your story is an effective reminder of how much of a difference that kind of real help can make for people.

    There are so many people with illness who are on their own. On the plus side the internet is a great way to connect with others with similar problems. For some people a donation of a computer would be a godsend. I have a relative who is only connected to family by computer and free wifi at coffee shops because he has no phone.

  • Tanya Martin says:

    It could easily be a campaign to help anyone with a disease that keeps them from getting out often. Thankful for my computer, but even have times I’m to wiped out to think to type. Facebook “Like” and Twitter “Retweet” is usually used more often then. Seems funny to appreciate that “Like” or “Retweet” button.

  • Wayney says:

    This is a great post! Because people in general volunteer more during the holidays, I’d add to your call to churches that they should do as you suggest not only during the holidays, but at all times. Most churches do a wonderful job of remembering others during the holidays, but the holidays are not the only time people need help. When I was in the nursing home for rehab, unlike many residents, I had regular visitors. My husband, at my request, only visited once during the work-week and then every Saturday he and my son were there. I also asked that they only visit every other Sunday in order to give them time to do something together on the weekends. We’ve always had times where our son had time alone with each of us and we also took time to do things with each other when he was not with us. So I saw no reason for that to change just because I was in the nursing home. We had times where my son and I hung out together and my husband either went back home or went and did something else so that we each had time alone. But I met many residents whose family members seldom visited. One woman, her family lived closer than my guys, and her child seldom visited. In fact, she had visitors from out of state one time, and when they returned a few months later, I’d seen them more than I did her local family. Yet another woman’s son was there almost every day before he went to work. He also came and went to church with her at the service we had at the nursing home. Some groups visited weekly, others once a month, and some never visited except right around the holidays. The ones I remember most are not the ones who came during the holidays bearing gifts, but those who visited and made it a point to get to know those they were ministering to. It’s the ones who made certain that the nursing home residents who couldn’t get out got to have church services each and every Sunday morning. So I’d encourage churches to consider that aspect of helping others. People who tend to be thought of during the holidays are sometimes forgotten during the rest of the year. While the environment of a nursing home is quite different than the environment of someone who is more home-bound, their needs are sometimes greater simply because they do not get out often. Some only get out when they go to a doctor appt. I know I’ve had times during flares when I don’t leave the house often. Thankfully, my hubby has things down and is willing to care for things I can’t do.

    In all honesty, churches are called to be models of caring for those hurting and in need. Unfortunately, many equate helping with money. And while the gift of food is a great help to many people, especially those living on a fixed income, there are also so many other ways people could help that takes little money. Sometimes just being there, telling the person who can’t always get out to go to church that you missed them, can make a huge difference. Listening is another help. Just a phone call can be a life line to someone who is alone and has health problems.

    You bring up another issue as well. Those who are fine one minute and not the next. People need to understand that if someone with RA suddenly becomes quite and even withdrawn in the middle of a conversation, it is likely nothing they did or said but it is likely that the person with RA is suddenly in pain or so tired and not wanting to complain. The way pain and fatigue suddenly hit can be mistaken as a number of other emotions. I know when I am in a lot of pain, I tend to sound angry even though I am not. I am just trying to fight my pain which causes me to sound and even look tense or angry. I know that when I am first getting to know people, I don’t always think to explain that and it has caused me some problems over the years with people I don’t know well. I inadvertently offend someone because my voice is tight and angry sounding and I don’t always think to explain since I am so used to having those who know me understand why I sound or look angry. I saw that played out in others during my nursing home stay. For the most part, the grumpiest people were only grumpy when they were uncomfortable. When they were relatively comfortable or had recently been given meds, they could be the nicest people. I know I am more likely to be easily upset by things that really are not hurtful when I am in pain. I tend to be more fragile emotionally. My guys and I have always picked on each other. And I’ve had times when something they’ve said made me laugh, but others when the same words in the same tone have caused me to burst into tears. Thankfully, they understand and don’t worry about upsetting me or feel bad. I don’t feel any anger or anything at them. We just all try to brush it off and move on, chalking it up to pain/flares etc.

    Having a voice is so important. And anyone giving those who have RA or any chronic disease, is doing something important. Especially for those who cannot, for whatever reason, use their own voice.

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Faces of Juicing Book
Biotinidase Deficiency Not RA
Diagnosed with Rheumatoid Arthritis in Dec 2003 because of joint pain and fatigue. Found out on July 19, 2013 that I really was profoundly low on Vitamin B7 because of a rare disease called Biotinidase Deficiency. When I found out I was very weak, hardly could get out of bed, could not turn my head without getting light headed, dragging my feet when I tried to walk, struggled to breath daily for years and was having many many other issues. From the first 24 hours of taking Biotin my symptoms started to disappear and my body started getting stronger again.
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