Living with RA or How to deal with a psychotic disease.

By Bethnbooks Tuesday, February 17, 2009

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Today was one of those days. You know the kind. You wake up grateful it's not taking you forever to bathe and get dress and the pain is slight. The day is sunny and you have chores to do. Today was grocery shopping. I parked walked into the store and by aisle 10 my hands were throbbing from pushing the cart. A couple aisles latter it had moved up to my wrist and the my hips were starting to hurt. I was moving slower and slower. What should have been at most a one hour shopping trip by the time I reached checkout turned into two. I had the luxury of valet packing for my car but unfortunately they don't come home with you. Of course you can't leave the refrigerated or frozen foods in the car so inside everything goes. I spent the rest of the day in bed with a heating pad for my lower spine which is OA of the L5,L6 Facet joints, the ones that cause that lovely sciatica pain down my right leg. Having a chronic illness doesn't bother me it's the unpredictable nature of it that drives me crazy. I never know how long a good period will last. Granted there are things I can do that can help stave off the pain. I had a difficult time coming to terms with my limitations. I still have trouble with it. I guess it just comes down to squeezing as much life and joy out of the good times as possible and hope that when the pain hits it doesn't hang on to long. Here's hoping for more sunny days.

Comments (16) | Add comment

kathyglpn

2/18/09 2:43am

I totally hear you girlfriend! Altough I am beginning to think my days are mainly the pyschotic ones !LOL I have OA of the spine as well as RA too. I see a neurosurgeon March 5th. Facet arthritis has now caused severe spinal stenosis.

It is one of those heck if you do heck if you don't things though, like about everything else with RA and its cousin problems. But, you just make the best desicion for that time and go.

Hang in there hon, many of us are out here cheering for you. Take care of YOU. KathyG

Bethnbooks

2/18/09 7:56am

Thanks Kathy. Sometimes it's so easy to get caught up in the frustration and pain that you forget there are others out there that suffer the same if not more. I appreciate the support.

Beth

kathyglpn

2/19/09 11:56am

Hey Beth, I hope you didn't feel that I was in anyway trying to take away from what you are feeling and the pain you are having. I just have been so relieved to have a forum that I could be honest about how I am feeling and what is going on. Because over the years I feel that most of the medical professionals you come into contact with can't relate and often feel that you are embelishing some how. I am much relieved on an emotional level after reading what you and the others say about their feelings and medical care and I don't feel as alone. I can relate on so many levels. I was also glad to hear that someone else has to leave some of the groceries in the car! LOL Take care kiddo, and as always be good to YOU

travelluver

2/18/09 12:41pm

Beth, I've had that same scenario happen more times than I can count! I get shocked many times when I get home to see it took me 2 or more hours in 1 store. I do the same, as I go thru each aisle, I get slower & slower, then the hips start to hurt & walking is painful. I also know that dreaded feeling of "now what am I gonna do when I get home with all these packages to take in." Sometimes I leave nonperishables in the trunk for my hubby or daughter to take in when they get home. I sometimes can get the packages out but only make it to the steps in our garage. I just leave the stuff on the steps & take what needs to go in the fridge or freezer in.

It is very aggrevating when you want to be independant & you start out feeling well enough to go do your things, then have to face the symptoms afterward!

**BIG HUGS**, rest well today & "tomorrow is another day"!

Bethnbooks

2/18/09 8:18pm

You can get your child to do work around the house? I'm lucky if I can get my children to get their clothes from the floor to the hamper. Of course that has nothing to do with RA I think the majority of parents with teenages will tell you it's like pulling teeth. I'll make sure that the frozen and refrigerated food get packed together and I'll leave the rest in the car for my husband. It's a good suggestion. Thanks a lot for the BIG HUGS. It is nice to know people who understand where you are coming from.

Beth

robin

2/18/09 1:33pm

haha yea, it really is psychotic. i love that description. im lucky to have my mom help me with groceries. hey, have you ever tried that home delivery service for groceries? i just thought of that. it might actually be good to try. i see the trucks around my area but never figured out about it.

Bethnbooks

2/18/09 8:27pm

My area has a delivery service. It is just I prefer to select my produce and meats myself. I guess the irony is that half the time I don't feel well enough to prepare meals and the food gets wasted. That drives me crazy so I only try shopping for what I need and that is dependent on how likely it is that I am going to be energenic enough to prepare a full meal or if it is a pizza delivery night. I gave up trying to be June Cleaver years ago.

Thanks for the suggestion and if my mom drove a car I would probably get her to do my shopping. She picks better produce.

Take care,

Beth

Becky

2/19/09 10:35am

I agree with you. My RA is psychotic. Even with good meds you never know when it is going to say "here I am, pay attention to me!" Everything takes longer and people just do not "get it" that you really do not feel well. By the way "The Scream" is perfect for the frustration I think we all feel with this disease sometimes.

Lene Andersen, Health Guide

2/19/09 11:13am

This blasted disease throws as many temper tantrums as a two-year-old on a sugar high. Psychotic is right.

One tip. Enjoy the good times, but stop before you hit your limit, e.g., if you like gardening, do it for 30 minutes or an hour instead of an afternoon or the whole day. That way you have enough energy left to do it again tomorrow, but if you use up all your energy and push yourself to the place where you're in pain, you need several days to heal. Of course, there are times where you don't have a choice and then there are the times when it's just worth it...

am_ruoff

2/19/09 2:52pm

This sounds just like some of my "good" days, but I have been told that my condition is fibromyalgia.

Glori Peterson

2/20/09 12:08pm

I dont know what your on, but latley I've tried humera, im just going on my third shot and that means about six weeks - but guess what, I don't have the long periods of pain so far....it's not perfect, I don't know if this will change tommorrow, but for today the only thing that is bugging is a shoulder OA and I'm too tired, Im telling myself give it time and I'm partly working on trying to get through the tired by getting a part-time , yea right, like there are any, but i think if I'm moving thats god. I don't know what I could do anymore but no choice, now that I've been diagnosed now we drowning in unpaid bills because of lack of income - I'm so scared - I'm in bible study-I know God comforts me-I still have trouble fighting the tired part and getting a job for my family, anyway try something new but don't give up-thats not an option ok....as you notice there seems to be a lot of us out there...lov glori

Bethnbooks

2/20/09 2:02pm

Dear Glori,

I never give up. I'm pig headed that way. I've had RA for 12 years and have been on just about everything. I did have a tremendous 5 year remission on Enbrel and that was when I was still teaching in grade school. The Enbrel unfortunately just up and cut out one day. I've now been on remicade every four weeks for the past year along with methotrexate which I've always taken. The remicade works great until it doesn't and that usually is about 3 to 5 days before the next infusion. As for being tired well I'm always tired. When I was teaching I come home from school and go right to bed at 3 in the afternoon and not get up until I had to get ready for work the next morning. It just took to much out of me. I hope your finances improve. Have you considered applying for Social Security Disablity? I'm sorry money is so tight for you now. If prayer is your venue to peace go for it.

Take care,

Beth

marnie

3/13/09 3:12am

hi there.

i totally know what you mean. i'm only 15 but have had RA for the majority of my life.it is a nuisance and a pain and many days you think why me?

Friends and family will never understand what your going through and that is really frustrating for me. some days i can't eat or just want to sleep all day.

i have not given up yet tho. i am trying to fight this disease.

here's to summer days when your legs don't hurt as much.

i feel your pain

marnie

Bethnbooks

3/13/09 6:59am

Dear Marnie,

You are absolutely correct. Friends and family don't understand but if you ask them I'm sure you will find they are more then willing to try to help you get through those rough days. It's the asking part that's the killer. It feels like you are giving up so much of yourself and your independence. Sometimes though it's needed and you have to be humble enough to ask. If you can get that part down it makes it a little easier. Of course I rarely practice what I preach and prefer to be a hard head and spend days afterward in pain. I'm sure at some point I'll soon tire of that. Or maybe it's what makes me fiesty enough to keep going. Who knows? Just keep moving the best you can. It's when you stop that you find you have a problem.

Beth

P.S. I was thinking of sending my RA to psychotherapy maybe it's not psychotic just bi-polar.

marnie

3/13/09 8:07am

Hi. Thanks for the comment back :)

Yes, I do find asking people for help quite a hard task. im very stubborn haha.

i will try to ask more. thanks so much for your advice. ps how old are you?

thanks again.

Bethnbooks

3/13/09 7:41pm

I'm a 47 year old mom of three. I use to be an elementary school librarian before the treatment for the RA compromised my immune system and I caught everything the little darlings brought to school with them. I miss teaching. I had grades PreK thru 8th and I was pretty good at relating to all age levels. I hope that's not to much info. You take care and you are very welcome.

Beth

Living with RA or How to deal with a psychotic disease.

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