Advice for Better Living Archives

I am a mother of 3 young children about to enter my first holiday season with arthritis. HELP! How do I get everything done without having a big flare?

Holiday Help: for Xmas shopping I would check out things on the internet or through mail order catalogs. ( My kids don't understand why some days the UPS truck drives right by - I order so many things LOL ). Also, start decorating early, and just do a little bit each day. For gift wrapping, keep it simple, wrap the gifts in a comfortable area so you don't get too stiff. Also, do a few things at a time, or use gift bags. Think about getting together with friends for a cookie exchange. That way you still get a variety of Christmas cookies, but only need to bake one or two types yourself, and make sure you choose easy to make cookies, or even bars. Put on some Christmas music, and relax also.-Sue

I am a mother of 5 children the oldest is twelve and the baby is 5. I was diagnosed with ra in the spring of 1996. That first christmas was something. The hardest thing that i have found to do is ask for help when you need it. Delegate some of the responsibility of wrapping and such to the kids, your husband, or a good friend. I was surprised to find out later that the ones that were closest to me were afraid to offer help for fear of making me feel more helpless. My fear was asking because i did not want them to think of me as a wimp. So just communicate your needs. And be ready...your true friends come to the surface when you are diagnosed with ra, and your true friends will help in any way they can. finally get enough sleep. It can be your best friend!!!!!If any one would like to talk my e-mail is lynderlou67@aol.com -Lyndee

10/02/00

I have very bad Fibromyalgia and Polymyalgia. I am so tired all the time, overweight and too tired to exercise. How can we cope with this??? Please tell I am not alone, I have been to a lot of classes, but no one has these two together.

You are definitely NOT alone. I do not have your exact diagnosis but I do have several forms of arthritis and a weight problem. (Just look at the Wooster pictures if you dont believe me.) I dont know the answer. But I do know, my value is not based on my dress size. And neither is yours. Work at your weight problem, the best you can. But dont beat yourself up about it. All you can do is the best you can. I still struggle with my self-image. But what I do here and at alt.support.arthritis, has much more to do with who I am than what size I am. And I am finally beginning to believe that. God made us all different shapes, weights, and colors, for a reason. - Arthritis Insight Member Char

You are not alone! Exercise is difficult for many of us, no matter what the diagnosis. Let's hear from some of you.

9/28/00

How do you convince doctors who haven't followed you that you're not just looking for more medications? They look at the list of 'diseases' and your list of medications and just write you off as a flake. How do you get them to take you seriously without putting on an Academy Award performance for them?

If your Doctor doesn't advocate for you, then its time for a new Doctor that believes in you and works toward the best care no matter what the diagnosis is as all the medicine you are taking figures into the final picture. Remember you are the one paying the price with the illness along with dollars.-TT

I was told by a doctor once to NEVER mention other diseases, especially psych ones! Not if they do not have DIRECT bearing on the others. This also means you leave the meds for those diseases off the list of meds you're taking. Let your pharmacist deal with checking for potential drug interactions, it's their specialty, and they're better at it than the doctors anyway. If there is an interaction then the pharm can call the doc back and ask for a substitution and offer choices to the doctor. The doctor who told me this has a wife with Sjogren's. They absolutely never mention it unless it has direct bearing on the current situation, because otherwise doctors will chalk it up to the Sjogren's and not do the battery of tests they would normally run. (This is why you don't mention psych diseases. There is still so much prejudice out there -- I am Bipolar, and no matter that I have been well stabilized for years, if that is on the list, I am automatically a crackpot) Along this same line, this doctor and his wife were told by their rheumy that he knows for sure she has Sjogren's but he was not going to do the last of the confirmation tests, as he didn't want it in her permanent record, because it would affect her insurance. So he keeps the diagnosis as vague as he can get away with in her records. If that doctor retires or something, of course, the situation gets a little messier, but you can always explain to the next doctor and they have the prelim. bloodwork and such from the orig. doctor to back you up.-Aim

The problems I have had with not being taken seriously by doctors is not because of my lupus, but because I also have panic disorder. The panic disorder is under control, but I have a specific phobia about medical testing, and being at doctor's offices. My therapist said it's a result of being ill with autoimmune disease from a young age, it's not an unusual phobia for adult survivors of chronic illness.
What I use to do was try to hide it, but the blood pressure gives it away every time, it's normal at home.
I've also had to face my worse fear, which is having a panic attack in front of people.
Now, I bring up the subject first, sometimes on the phone before the first appointment. Some people don't like treating certain illness. I think that's fine as long as we can all be honest, and approach the other medical problems from the perspective that they will have to work around my anxiety disorder.
-Arthritis Insight Member Mary

Any advice from fellow actors? Tell us!

9/21/00

I have arthritis in my right hand, which is slowly getting worse. I use a computer for my work and my employer will obtain a special mouse for me if it can improve my working situation. I need some info' on available mouses (not mice) or even joysticks if they can be configured to work as a mouse.

I like the Expert Mouse by Kensington. It has a large rolling ball in the center and two flat buttons on either side, allowing you to use any part of your hand to roll and your thumb to click. It also works with my left hand quite easily, even though I'm right-handed. -Ann

I swear by the Logitech Marble Mouse. It is the one that is elliptical in shape (so fits in my small hands nicely) and has a very large red ball on the top of it. The buttons are on either side of the ball, so your thumb or pointer can go on the 'regular' button and your pinky and/or ring finger on the right-click button, with the middle fingers free to roll the ball. The size is good, and it is synchronized well so that it does not take too much hand movement to move your cursor. No dragging a mouse, so no wrist issues, and the design is such that it NEVER bothers my fingers or hand.

I found it on www.pricewatch.com for $19.95 refurbished, and it is available in any computer supply store for around $30.

Hope this helps. - Arthritis Insight Member Aim

I don't have a great mouse but I wish I did; I have a great deal of problems with my hands too. I do have a suggestion for you that has helped me a great deal with my hands
I was given exercises to do for carpal tunnel syndrome from a friend. I do these exercises every evening while watching TV and they have greatly improved my flexibility and pain is almost gone. You can get a copy of the exercises your local library in books on the carpal tunnel syndrome.
I hope someone out there does know of a special mouse, I loved to own one.
Arthritis Insight Member Lynda

No mouse, but what about voice recognition software? My supervisor told me months ago that if my hands ever get to the point where I can no longer type or use a mouse, the company will purchase the software for me. Arthritis Insight Member DeeTee

I use a Logitech wheel mouse at work, which I like for a couple of reasons:
- the shape supports my hand
- the wheel makes it easy to navigate quickly through a large document
Not everyone likes the feel of it, but I like it better than the Microsoft IntelliMouse that I have at home.
Computer and office stores often have many varieties out on display, so you can get an idea of the feel of what is available on the commercial market.
Good luck! -Arthritis Insight Member Beth

I just found a site called Keytools.com
It looked pretty interesting. I haven't tried their products and don't know about prices but sure looked promising. -Arthritis Insight Member Melanie

We're still looking for a great mouse!!

9/14/00

How do people deal with calling in sick to work when they're having one of those days where you wake up and can't move?

Hi, I am fairely new to the site but I wanted to let you know what happened to me. Last Wednesday, I was not feeling well, I was hurting and had no medication left. I called my job (a small business) and told them I was not feeling well. I had knee replacements in February and July and I was still having a great deal of pain.
Nothing was said when I came back. On Friday Sept 15th I was told at 4:30 that I was laid off. Business was slow. the other workers consisted of the owners and one other fellow who is the bosses best friend. Even though I have more seniority it just didn't matter. Arthritis Insight Member Sandy

I have been EXTREMELY fortunate in my employer, that's why I'm still with them after ten and a half years. I became disabled while one of their employees and they've watched me go downhill. Another fortuitous circumstance is that the two NASA scientists I support here at Goddard Space Flight Center are also disabled - one has epilepsy and the other has such a bad spinal column that it hurts to watch him walk. They've both been very supportive when I've had to be out for any reason. I can 'make up' my hours by working on Saturdays or Sundays if I run out of vacation/sick leave hours. So I do not hesitate if I am having an unusually hard morning to either come in late or make it up on the weekend. Also, I tend to move slowly most mornings, so I can come in at 10:00 and just work until 6:30 or 7:00 on the days I need to. Arthritis Insight Member DeeTee

I put the Family Medical Leave act in place so when I couldn't get there on time or couldn't make a whole day or just couldn't do it that day, my job was not jeopardized. I also met one on one with my boss and explained my situation and what I was dealing with daily. She allowed me to take work home and credited me for those hours so I was able to do work and rest in between when I needed to. Primarily, I made it clear that I wanted my job and was willing to do what I had to to the best of my ability to remain on the job. It worked for me until I just couldn't go anymore. Arthritis Insight Member Melanie

As the manager and the opener of the store I run I have no one to call off to. For me it is just the point that I have to be there no matter what the pains is I might be having. Without my job I would not be able to afford the doctor care or meds. The alternative is not an option. However on the extremely bad days I will pull my self up and go to work (and believe me there are days I want to go into the back room and just give in and cry from the pain but I don't). After I get done what has to be done then I will start making phone calls to get someone in to take my place after 10pm. (my day starts at 5 am at the store). I don't let myself give in to the pain. I can't. When I finally get to leave I usually end up back in bed as soon as I get home and go from that point as needed. If you are someone who can call off then I would make sure your employer knows what is going on and talk to your doctor so you can have some form of written excuse and a letter from your doctor for your employer explaining the seriousness of your arthritis. I have done this with my supervisors and it does help the situation. My employers know I am going thru a rough time right now and I have sat down and talked with them and their parting words at our last meeting was 'to do what I needed to do to get thru this time right now' Talking and education does work. Good luck. Arthritis Insight Member Vickie

When I hurt to the point I need to stay home I call my boss and leave him a voice mail (ok so I'm chicken and I call in before I know he'll be in the office).
Seriously, I have no problems when I call in or I am at work and hurt to the point I need to go home. I have sick leave and use it when needed without any problems. I work for the military and currently have 2 understanding bosses, however this changes every 2 or 3 years. I have provided doctor's notes a couple of times when I've been required to do something that I knew I couldn't or shouldn't do. For the most part I'm very lucky and have no problems when I need to take off. Arthritis Insight Member Tery

Hello-I'll bite in this one. The university department I work for is really understanding and I'm so grateful for that. They know about my OA. I've been able to set up an option for myself where I can work from home occassionally if I need to. There are times when I can do that rather than just call in immobile. If I wake up and it's one of those 'I can't move' days I'll call in and tell them I'm having a bad arthritis day and I'm not coming in. Good question! Arthritis Insight Member Raven

Hello! I work part time and I am the boss. But I do have a boss to answer to too. She knows I have RA and have some bad days. When I first get up I take a warm bath or shower and take my meds. This seems to help. The more I sit around and hurt the more I hurt. It seems when I get to my job the people around make me not hurt so bad. I have had to have my husband pull me up and get me on my feet to get me gong. It would be rough to have to work 40 hrs a week. The warm shower really helps. Less stress and some good rest. Take care. Arthritis Insight Member mcclintic