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Archive for October, 2010

Check my other blog, Ancient Reptile, for more detailed info & links to official announcements from the FDA and Sandoz.

For those who are using injectable methotrexate, this is scary. Methotrexate along with Plaquenil (hydroxychloroquin) is one of the first line meds given for rheumatoid arthritis. As the disease progresses, or if the oral dose causes too much nausea, the rheumy doc may prescribe the injectable form. The dose can be lowered with the same disease altering effects compared to the oral form.

There are many of us “out there” who use the injectable form of methotrexate. Having just switched to the injectable form, I was scared when I first heard about it. Then I read it was for glass particulates and not for something really nasty – like bad byproducts or chemical degradation – something that would cause disability or death [doh! the disease causes disability and death, and the meds can cause disability and death, so I’m worried about byproducts or chemical degradation? Well, since I’ve been taking it for several years with good results and few side effects (occasional episodes of horrible nausea requiring medication for THAT)], yeah, I’m worried about byproducts or chemical degradation in my methotrexate!

So that is the news of the day. Next, I’ll talk about fingerless gloves!

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Those of us with physical disabilities find we are deeply fatigued more frequently than others do. For several types of disability, fatigue is the first thing you will notice. Some of those are fibromyalgia, chronic fatigue syndrome (CFS), rheumatoid arthritis (RA), lupus erythematosis (LE), and other autoimmune-related diseases.

Some of the things people do to Improvise, Adapt and Overcome fatigue:

The first thing the professionals tell us is to “reduce stress.” That’s easy to say, but many people have told me being told that doesn’t help. HOW do we reduce stress, when there are bills to pay (that are ‘way beyond our means), the spouse isn’t supportive at all, the family thinks we are goofing off, and our friends think we are hypochondriacs – not to mention our boss doesn’t understand and doesn’t want to understand our limitations. Most of these stressors are beyond our control, so just being “patted on the back” and told to “reduce stress” doesn’t cut it.

We can reduce the effects of external stressors, however, by using any number of coping mechanisms: giving ourselves permission to take 30 minutes to rest and to use the relaxation technique(s) that work the best for us. For me, it is progressive relaxation and light meditation. There are the times we have to “suck it up” and force ourselves to go onward, to accomplish tasks, to deal with the stressors head on. Once we have done these things, however, it is important to take the time to rest and regroup.

Getting enough sleep is of particular difficulty for those with pain. Fibromyalgia involves a sleep disorder – the less sleep, the more pain; the more pain, the less sleep. RA, other immune-arthritis, LE and other conditions involve pain. Back or neck injuries, regional sympathetic syndrome, and other effects of injuries involve pain, also. Medication(s) may be needed to assist – with getting to sleep, with controlling pain. Letting ourselves accept that may take struggle and time, but it is an acceptance you may have to come to. In my own life, there are days when I take pain pills and the rest of the time when I don’t. Sometimes I allow myself to experience the pain, other times I don’t. It depends on what is going on. Each individual must make his or her own decision about pain meds.

Sleep hygiene is something else. Before using sleep meds, most of us try a number of things in order to avoid medications. And there are many things that do help.

A bedtime routine that increases relaxation will help. Any routine that is calming to you is helpful. Things other people find relaxing include aromatherapy (you have to experiment to find the aromas that will work for you), a warm bath, particular music, a sleepmask, something to muffle extraneous sounds, pillows to support aching limbs and joints, a cuddly stuffed toy, cool packs or warm packs, Biofreeze or other rub, and/or a massage from a significant other.

Use of herbal remedies such as Valerian Root

Use of over-the-counter sleep aids such as Benedryl (25-50mg).

Exercise during the day – both aerobic and stretching, perhaps some strength exercises 2-3 times a week.

Another medical recommendation is exercise, and swimming is at the top of the list for those with joint and muscle disorders. That’s all well and good if you have your own pool that you can heat to your need! But swimming at most neighborhood or park pools will only “seize” up muscles and let them become even more painful. Some with arthritis will find the coolness to be bad for their joints. Finding a therapeutic pool is problematic. It may be impossible. For those with fatigue on top of their muscle and/or joint problems, there are the difficuties of getting up the energy to get dressed, pack the swimming stuff, get in the car, drive to the pool, bring the swimming stuff in, change into swim suit, do the swimming exercises, get out of pool, shower, change clothes, pack up swimming stuff, get in car, drive home, unpack swimming stuff and put into the washer, start washer, collapse. For us chickadees, did I mention doing “things” to our hair?

I have no answers to the swimming conundrum because I haven’t found the answer myself. Any suggestions out there?

Another thing the docs tell us is that we have to learn to “pace” ourselves. We do need to do this, but life has a habit of crashing in on us from time to time. How can we “pace” ourselves when we get into a crunch? Well, to my knowledge, we can’t. Once again, we have to “suck it up” and force ourselves to go onward, to accomplish tasks, to deal with the stressors head on. Once we have done these things, however, it is important to take the time to rest and regroup. THEN we can begin to pace ourselves again. Pacing yourself means striking a balance between rest and activities. Look at the activities before you. Determine which should be done in the morning and which should be done in the afternoon, and which in the evening. Rest after each activity as long as you need to. If you need to take a full day after a series activities, then do so. Don’t let anyone make you feel guilty about it. Simply point out that your body needs more rest than their’s do.

The other thing we hear from our docs is really good advice for everyone: have a healthy lifestyle. that means eating well, drinking plenty of fluids, not smoking, not drinking more than 2 oz of alcohol a day (1 beer, or 1 glass of wine, or 1 mixed drink). Regular exercise of some sort is recommended, and a hobby or career that you enjoy and find fulfilling is important.

Comment back with your hobbies. Mine used to be woodworking, but now it is surfing the internet for funny or weird things that will make me laugh. I know someone with RA who makes jeautiful, individualistic jewelry and donates part of the price she charges to an RA awareness group.

For chronic fatigue, there is little that science has found to help. An expensive drug called Provigil has been used with some success in some people, but does not make us feel “normal” all the time. As fatigue is a component of depression, antidepressants may help with that, although it won’t cure the overlying chronic fatigue problem. For pain, your doc may prescribe Acetominophen and NSAIDS. If you have sleep problems, your doc may prescribe sleep medications (or, you might try over-the-counter sleep aids such as benadryl, Valerian Root, chamomile, tryptophan, Kava Kava, Hops, passion flower, California poppy, Skull cap, catnip, St. John’s Wort, and melatonin. SAMe has been used to treat chronic fatigue, and is said to promote healthy sleep cycles.

Some herbal blends for sleep are AmbeSleep, Lunexor, and RestAid. Some people like one better than another. Alteril is a mixture of valerian, melatonin and tryptophan. Many people have had good results from this. Each person will have to do their own research as owha woks best for them. Just a note of caution – be sure you let your doctor know what you are taking. There may be some interactions with medications you are prescribed.

If you have other remedies, please let me know! Fatigue is such a common problem among the auto-immune and pain-related disabilities – we need to find ways to fight it!

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There are several things in homes and elsewhere that require you to press your finger against them to cause an action. The elevator comes, the oven is turned on, the dishwasher is turned on. There may be buttons or there may be a flat surface with areas indicated for pressing.

I don’t know about you, but most days, now, my fingers don’t want to do that. If I insist, my fingers YEEE – OUCH!

A few years ago, my husband (AKA the Ol’ Curmudgeon AKA Himself) made a wooden mortar and pestle for crushing herbs and spices. It worked, but he eventually obtained a ceramic mortar and pestle (not as big as Julia Child’s, of course!) and retired the wooden set. It’s rather pleasant to the eyes, so I insisted we keep it. (More about keeping things later.) I was looking for something to use to press the various controls, when Himself suggested getting that pestle and using it.

Wooden Pestle in Hand

Wooden Pestle

Wooden Pestle

Wooden Pestle in Hand

As you can see, it is about the right size – at least for now. I can still grasp it. Eventually I will need an object somewhat larger in diameter. But, as I said, for now I can use it.

Oven Controls

Oven Controls

Our oven has the kind of controls I mentioned.

Pestle Used on Oven Controls

Pestle Used on Oven Controls

And this is how I use it on the oven. Being rounded it doesn’t harm the surface of the control. (It’s hard to take good pictures of myself doing things, but Himself cooks and doesn’t “do” photography!)

Hot Water Dispenser

Hot Water Dispenser

The Panasonic hot water dispenser makes Jim-dandy hot water for making my tea each morning (I drink two huge travel cups of it daily). But the controls require pressing.

Using Pestle on Hot Water Dispenser

Using Pestle on Hot Water Dispenser

Using Pestle on Hot Water Dispenser - 2

Using Pestle on Hot Water Dispenser - 2

The wooden pestle works great on this appliance, too.

I also will use it on the dishwasher (on the infrequent occasions I actually “do” dishes), and the washer and dryer, as necessary.

You can also use the handle of a plastic utensil or a tableknife. They work. I’ve tried them.

Happy innovating! Remember to Think Outside the Box!

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Those of us who develop a handicap or disability often find ourselves unable to function in the non-handicapped world. Tools, kitchen utensils, even toothbrushes seem to defy our ability to use them. Perhaps others in our families just don’t understand why we can’t continue to function as usual.

My handicap is rheumatoid arthritis (RA). I am blessed to have a mild-to-moderate case at this point. I am careful to add the “at this point” because I never know from day to day how I will be the next day. I could suddenly find myself completely unable to walk, to use my hands, to raise my arms. And so it goes. There is the pain factor – not to be sneezed at – and the fatigue factor – another misery, as if the RA patient didn’t have enough to worry about.

My motto is a saying that my ex-Marine husband uses a lot: “Improvise, Adapt, Overcome.” I need to Improvise and Adapt in order to Overcome the disabling effects of my RA.

So this blog (which supersedes “Ancient Reptile”) will detail the various things that can be used to Overcome disabilities. There will be a new post about twice a week, sometimes more often, and frequently accompanied by photos to show how something works in the “real” world of one handicapped / disabled woman.

There will be, I hope, some guest posters, who will share their accommodations to their disabilities. In addition, I hope you, the readers, will contribute comments that will include suggestions for items to use or ways to do things. If you have suggestions for how this blog should be arranged and organized, I’m all eyes (and ears)!

It will be several days before the next post, but, in the meantime, I hope you will subscribe via RSS or e-mail.

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