Big Update

Well, I owe you all an apology. This blog has been abandoned for four years, and a lot has happened in that time.

Katie is married, about to finish college, and expecting her first child!

I went back to work in 2013! I work from home, but I work full time doing technical support for Apple, Inc. as a Senior Technical Advisor. I hope to get back to doing QA, technical writing or business analysis (see my résumé if you’re interested!) but this is a great start. I’ve worked for three years now, so I’ve proven to myself that I can work reliably.

I’ve been diagnosed with Ehlers-Danlos Syndrome (hypermobility type), which explains a great deal, like the fibromyalgia symptoms. EDS is a genetic disorder that affects the connective tissues and, in our case, leads to loose, frequently dislocated joints and chronic pain. (I had asked a pediatric rheumatologist about EDS in Katie many years ago but he blew us off.) EDS is a genetic disorder and there’s evidence of it in two generations of our family, with anecodatal data of it in a third. The fourth generation hasn’t been tested yet but I’m hoping she will be.

The symptoms are still the same, as is the management. I’m on the same medications for management—Lyrica, with occasional opiates and muscle relaxants for breakthrough pain. I stopped taking narcotics on a regular basis a few years back so that I could return to work. Controlling stress is very important, and building up the muscles around joints in order to avoid dislocations is, as well. There’s a lot of documented trouble with dysautomnia, particularly Postural Orthostatic Tachycardia Syndrome (POTS), which I seem to have but haven’t taken the nasty tilt table test to have confirmed yet.

But I’m able to work, which is the important thing. I’m in a stable, supportive relationship with my partner Rick, who has no online presence to speak of. We live in metro Atlanta with our dog Harpo and cats Django and Tully and a varying number of kittens fostered from Lifeline Animal Project.

So that’s me. What about you?

April 12, 2016 · Cyn Armistead · One Comment
Posted in: Ehlers-Danlose Syndrom, employment, Personal

Being an active part of your own health care team, part I

People who have chronic or complex health issues need to take an active role in their own health care. That doesn’t come naturally to everyone, and in fact it runs counter to the traditional way of interacting with “Doctor God” that I, for one, learned from my own parents. In this series, we’ll talk about some of the things we can do to take an active role in our own health care.

First, we’ll talk about medications. Many of us take a cocktail of medications and supplements every day, prescribed by everyone from our primary care providers to pain management specialists, rheumatologists, allergists, and neurologists. Keeping up with them can be troublesome. Just remembering to take them can be difficult!

I’ll be honest: if I don’t set up my big weekly medication box as well as my smaller one once a week, I’m just lost. I found it online (I no longer recall where) and it is divided into nice, large compartments with four sections for each day of the week. The little box is just for my thyroid supplement, which has to be taken as soon as I wake, apart from anything else and before I eat anything. I use those boxes and alarms in my phone to remember to take my meds, and I’m fully compliant. Before I set up that system, I just couldn’t manage to remember any of my medications until I was already in really bad pain or having symptoms that reminded me of something else I’d forgotten to take.

If you set up a medicine box and reminders, you only have to think about what to take when once a week. You can even get a caregiver or other helper to do the setup for you, if necessary. I usually check my drugs a couple of days ahead of time to be sure I don’t need any refills.

Speaking of refills, running to the pharmacy can be real nuisance when you feel like crap. It’s so much nicer to have your medicine come to you! If your health plan offers a mail-order pharmacy option, check into it. It can save time and money, since most health plans offer lower co-pays when you use the mail-order option. Add in the fact that you can often get a 90-day supply of medication rather than a 30-day supply that way, necessitating fewer refills, and it’s a no-brainer. Some drugs, of course, are limited so you can’t fill them that way, but use it when you can.

It’s important to keep every member of your health care team up to date on the treatments you’re receiving, especially the medications and supplements you take. It’s also important to have a list with you, in case you’re in an accident. If you get in the habit of doing so, you’ll never again have to rack your brains while trying to remember how that weird name is spelled or what the exact dosage of those three different white pills you take is. That’s just not what you need to be worrying about during an emergency, especially.

Good doctors will look at your medications before prescribing anything new, checking for known interactions, but few of them are really well-educated regarding medications, and too many of them just know whatever a pharmaceutical salesman has told them. That’s why a good pharmacy with a pharmacist you can trust is vital. I cannot stress this enough: get all of your prescriptions filled at one pharmacy!

Even with a good pharmacist on our team, it’s extremely important for us to read up on the medications and their interactions. Read what the pharmacy gives you with your prescriptions, but also consider using a site like Mediguard to track what you take. They’ll let you create a profile and save it, then they’ll notify you of any new information about your drugs, like recalls or new notices regarding interactions. All you have to do after the original entry is add new medications or remove the ones you’re no longer taking.

With today’s economy, I hear from many people who aren’t taking all the medications they’re supposed to be because they can’t afford them. I can’t stress this enough: talk to your doctor! She may know about ways for you to get the drugs you need. She may have access to samples. She may be able to switch you to a cheaper alternative. She’ll probably be willing to help you get help from a patient assistance program if you find one at NeedyMeds (it’s always worth checking there!). If there’s really no way for you to get the drug, it’s often important to taper off slowly instead of quitting it all at once. Either way, your doctor must know what’s going on with you. Don’t be embarrassed—everybody is having financial issues right now.

If you’re on Medicare, every state has an “extra help” plan that helps cover medication co-pays for Medicare participants who meet certain income guidelines. Those programs aren’t well-advertised, so you could qualify right now and not know it! Call Medicare to find out.

July 16, 2012 · Cyn Armistead · One Comment
Tags: , , , , ,  · Posted in: Managing Your Healthcare, Medications, Resources

Fight Brain Fog!

Or, at the very least, give yourself more resources to fight it!

Cognitive abilities are like muscles, in that they have to be developed and exercised regularly, even stretched to keep them flexible. We can’t necessarily avoid the cognitive deficits that come with some of our illnesses, or as a side effect of our medications. What we can do is improve our faculties, giving us a better level of overall functioning despite those deficits.

Ways to Improve Your Mental Fitness
is an excellent article on the subject. I recommend reading it and noting some new things to try.

Personally, I find that doing things like a Sudoku or crossword puzzle or a couple of rounds of solitaire Mahjongg each day help me “wake up” my brain and think better. I’ve long wished I had access to the Nintendo brain training game (Brain Age? something like that), as it sounds like just the thing.

I really worried about taking college courses, because I know that if I had to take an IQ test these days, my score would be markedly lower than it was pre-FMS. Happily, I found that taking the courses helped me to regain some mental agility. I still have memory problems, and all bets are off during a bad flare—but I definitely feel that I’m coping better on a day to day basis.

Now that I’m not in school formally, I’ve been learning to program. It’s another kind of thinking, and one I’ve thought about acquiring for years. It hasn’t been easy, but I’m doing it, and it certainly is stretching my mental muscles.

Making music is another thing that works for me. I’ve been re-learning to play the ukulele, something I originally learned in the second grade. I used to know how to play piano, flute, and other instruments

I’ve always been a singer, primarily, though

, and I’m surprised at how much I’ve forgotten about reading music. I “know” the notes, but I’m so slow that I have to stop and think, “Now, wait, that’s two lines below the bass clef, so…” when it used to be as easy as reading any English text. The more I work with it, though, the more I find the exercise of thinking in another language to be useful as an exercise.

What are you doing to stay sharp? Have you tried any of the activities recommended in the article?

July 15, 2012 · Cyn Armistead · One Comment
Tags: , , , , , , , , , , , , ,  · Posted in: Resources

Canaries Are Us

Have you ever heard of how miners used to use canaries to test the air in mines? The birds would get ill, or even die, from bad air much more quickly than humans would realize that the air was bad, allowing the humans to get out of the mine.

Those of us who have serious cases of FMS and CFS/ME are human canaries. We often react far more sensitively to EVERYTHING – medications, weather changes, temperature changes, drafts, outgassing from new upholstery or carpets, VOCs in fresh paint, cleaning chemicals, pesticides, air pollution, preservatives – you name it. Anything which puts any kind of stress on your body or your psyche can provoke a flare. Most of us react by trying to avoid stressors as a main strategy.

We can’t avoid all stressors. We can’t mandate that everyone at the grocery store refrain from using fragranced products. I’m finding that we can’t always count on vital parts of our support network staying in place, because people change. We can’t avoid the weather and its effects on us.

And sometimes we need something, like radiation therapy or chemotherapy, to treat another condition, and we know that it will be a major stressor. There is no guarantee as to whether or not you’ll have a flare provoked by radiation therapy, of course. If your oncologist says that you need that in order to treat cancer, it probably isn’t wise to refuse it. 1 However, what you should do is make sure that you take really good care of yourself otherwise, and reduce your body’s overall stress load.

The best way to deal with being a canary is to take good care of yourself. Take care of the basics by doing all of those things you know you should do anyway.

  • Establish a regular sleep schedule that ensures that you get plenty of quality sleep, and stick to it. You may need regular naps as part of your sleep schedule. My rheumatologist prescribed brief hourly naps for me at one time. Do what you need to do.
  • Eat enough of the right kinds of foods to nourish your body and spirit, and make sure that they’re of good quality, as fresh and free of chemicals as possible. Many people find it better to eat multiple small meals throughout the day rather than to have three larger meals separated by many hours of nothing.
  • Make sure that you have a safe, quiet retreat that is clean, free of pollutants, and quiet. If you’re prone to migraines or otherwise sensitive to light, put in blackout curtains so that you can control the light in your safe space.
  • Get enough light. Your body needs it to produce vitamin D. If you don’t get out in the sunshine very often, use a light box. There are some very good, inexpensive ones available now.
  • Get in touch with nature if at all possible. Even if you only go outside for five minutes a day, you’ll feel more grounded and refreshed for that time.
  • Move. Be gentle with yourself, but get up and move at least once every hour. Stretch your muscles and get your blood moving. It will help.

1 This isn’t theoretical, but a response to a reader.

July 6, 2012 · Cyn Armistead · One Comment
Tags: , , , , , , ,  · Posted in: Chronic Fatigue Syndrome, Fibromyalgia

Getting Better

I’ve been very busy over the last six months and had some major changes in my life that have been very stressful. As I’ve said elsewhere, my main strategy in dealing with fibromyalgia has been to reduce stress in my life as much as possible.

Unfortunately, the main source of stress in my life over the last year was my relationship with my life partner. That ended in January, which led to a brief period of greatly increased stress—moving house, major lifestyle changes, etc. I ended up in the hospital for a brief time due to depression, which is one of my biggest health issues.

However, I had begun making some big changes a few months earlier. I had started on Weight Watchers, sticking to mostly fresh, local food. I had re-committed myself to exercising, joining the YMCA and getting serious about fitness. I had also found a good therapist and begun Dialectical Behavioral Therapy, which combines mindfulness techniques with cognitive behavioral therapeutic basics.

I believe those changes allowed me to avoid a total collapse despite the major crisis that struck in January. I’ve also lost weight, although that isn’t the primary goal of the changes. My total pain levels have been reduced and I’ve been able to reduce the dosage of one of my medications and stop taking two others. At this point, I’m hoping that I can return to work before too long.

I’m not always able to get to the Y when I like, and weight-bearing exercise is still painful (I have degenerative disc disease and arthritis), so I’ve had to be creative in finding ways to be active at home. It’s possible to do so, though.

As little as five minutes of activity at a time throughout the day can make a major difference in pain levels, believe me. I’m fortunate enough to have access to a pool in the neighborhood, but if you don’t, you can stop and stretch for a few minutes. Or hope about some light yoga? I found some free yoga videos that are accessible to anyone with a net connection on YouTube and various web sites. There are even chair exercises for those who aren’t able to get up and move around. Anything will help.

Remember to stay hydrated, before, during, and after your movement periods. It’s summer in my half of the world, so heat that requires more hydration all by itself.

Let me know how gently and gradually increasing your activity levels works for you, please. I’m interested in hearing from you!

July 5, 2012 · Cyn Armistead · 4 Comments
Tags:  · Posted in: Fibromyalgia, Pain