You Said…

We asked: What are some of the problems you encounter that ‘normal’ parents don’t have to deal with? And how did you solve them?

And you said:

Well, I’m a parent but do not suffer from arthritis. I employ a very special person who works 5 states away and is a parent. She has suffered severely for a while now and has just been diagnosed with RA. As an employer but more so as a friend I wanted to learn what to expect and how I could help. All of your comments have helped me realize what she is going through. Tomorrow I’ll ask the other people at the office to read your notes so they’ll also understand why she may have to break during the day because she is absolutely worn out or why she can’t just run upstairs and get something or why she must take a break from the keyboard. Unfortunately she has other health issues that complicate things even more. BUT – she is wonderful, mega-talented, disciplined, a great employee, super designer, great mother, great friend and will continue to be, I’m sure. Let me suggest something — if you need others to understand your condition whether it’s a family member, friend or employer like myself it would be very helpful if they read all of your comments. Now I can adjust around her needs. Thanks DH

 

Added June 17, 2001:

‘I have a 18 month old who is always on the go I want to do things with her that I know I can’t. I feel like the burden is all on my husband and I feel guilty.’ -Denise

 

Added March 31, 2001:

‘I have just recently developed osteoarthris in my knees and can no longer walk up stairs or run. I am a single parent with two teen-age sons, one of whom has ADD(very active, very impulsive). I am trying hard to get things back to normal, but there’s just a lot of things I can’t do. I have tried to explain to them that I need more help from them. I don’t have as much energy as I used to and I feel like they are being cheated. They are my only support network, so I hope they will learn from this to be more nuturing, more care-giving and more independent. The pain and fatigue sometimes make me more emotional in my conversations with them then I used to be. I get upset and frustrated easier. The only thing I know to do is recognize the underlying problem and talk to them about it when everyone is calmer.’ – Geri

‘The fatigue and not being able to run after them and play a lot. I have two girls 4 1/2 and three. They are very active and want me to do everything with them sometimes I get depressed because I can not do a lot with them.’ -TERESA(STICK)

 

‘I have two young boys 4 and 2. If my 2 year old falls asleep in the car close to nap time, I have a very difficult time carrying him up the steps to his crib. So, I try to keep him awake until we get home. I have ankle problems. I cannot ‘run’ after my kids. So, I keep them very close by in parking lots, etc.’ -Sue

‘well… the splints most parent’s don’t wear splints I have to on one wrist, the fatigue, the other personality that (sometimes) takes over when I’m flaring extremly BAD the ‘I’m not feeling well today guys’ They know it’s the arthritis. Explained to the kids just why? I don’t feel well it’s actually all they’ve known so it’s really not like a bombshell.’ -Teena

‘Picking Amanda up and down brings pain to my knees. Also, waking up and trying to get to her is sometimes slow due to early morning stiffness.’ -Bridget

‘I have found that getting them to all their activities has been a real challenge at times. Luckily I have friends that help out in a pinch.’ -Beth

‘When they were babies I had a hard time getting them in and out of the crib and changing their clothes while supporting their head. My husband did most of that for me. Sometimes I can’t do activities like bike riding with them, they go with their father. He makes up for most of the physical things I can’t do, thank God. I am really tired a lot too and can’t do all that class mother type stuff. It has always been like that for them so it seems like they are ok with it. Sometimes I think they get scared they are going to get arthritis. I tell them if they get it, they get it, there’s nothing they can do to prevent it. At least now there are new drugs so if they do get it they won’t necessarily be crippled or deformed.’ -Maria

‘Not feeling well most afternoons, and finding that I had to lie down at about the same time that they came home from school, since it was when I came home from work. Also not being able to go on any class trip when it required a bus ride, since I would end up not being able to move. Also always being too tired to do many activities.’ -Barbara

‘Fatigue, dealing with medication side effects, photosensitivity, inability to do things normal parents can do with their children like rough housing and strenous outdoor activities such as motorcycle riding, snowmobiling, snowskiing, waterskiing.’ -Stephanie

‘Keeping a house running smoothly with regular nutritious meals-haven’t really solved them, except have lowered my expectations.’ -N.

‘I haven’t figured out how to handle them yet.’ -Cris

‘Today…painful elbows…padded rocking chair arms with blankets and using a ‘snugglie’ for when I need to carry her.’ -Amy

‘Trying to change my sons diaper or give him a bottle when I have a ‘flare-up’ in my hands is very hard and painful…..I have a toddler also, that by the end of the day, I am exhausted from pain and I can’t play with her. This is hurting her and I.’ -Amanda

‘Fatigue!!! I just explained to both of my daughters that I am not able to do a lot of things that I use to do with them like play basketball & tennis, or run because I know have a disability, and they both seem to understand now that they are older’ -Pam

‘Mainly the overwhelming fatigue I feel on a daily basis. I work full-time, and many days don’t have the energy to go anywhere else when I get home. At this point, I haven’t solved this problem.’ -Lynn

‘I didn’t call them problems – instead I said they were challenges – and a victory was always possible. The biggest ‘Challenge’ was (and still is) keeping this RA from effecting the quality of our family life. Mountain climbing was out but short hikes were fine. Instead of feeling guilty for not having a spotless house – I learned no one noticed a layer of dust but they did notice – and resent – a parent too worn out from still trying to ‘DO IT ALL’. The truly important things got done.’ -Diane

‘Just the day to day struggle with fatigue and the occasional flare- I think that babies can tell when their mommies aren’t feeling well and cut them some slack…’ -Debbie

‘Initially I dealt with disability issues, such as how to pick up and carry a heavy baby with sore painful hands, how to keep up with 2 little kids while working and in pain and exhausted….
Now, 3 1/2 years years later, I am eternally grateful that arava has really brought my disease under control. But now I deal with managing lots of prescriptions and refills, while keeping up with a 4 year old and 7 year old. I try my best to keep my life as ‘normal’ as possible…but it’s a pisser when there’s a line at the pharmacy and we’re late for soccer practice…and oh no, it’s been almost 7 weeks since I got my labs checked…it’s really time consuming to keep up with a chronic disease.’ -S.

What do you say?