Ash’s Advice: Part One of Many To Come

Recently, friends have suggested that though I may be sick in body, I’m still a good writer, and that maybe through my writing I could find a way to help other people, especially other women, who are going through the trials and tribulations of chronic illness, whether it’s called:

  • Chronic Fatigue Syndrome (CFS)
  • Myalgic Encephalomyelitis (ME)
  • CFS/ME or ME/CFS
  • Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)
  • Fibromyalgia Syndrome (FMS)
  • “chronic Lyme”
  • Virus Induced CNS Dysfunction (VICD)
  • or… the list goes on!

Not all of these are exactly the same thing, but many of us out here receive a diagnosis of at least two of these, if not more!

And there are all the things that go along with the above:

  • Neurally Mediated Hypotension (NMH) which is also called
  • POTS (Postural Orthostatic Tachycardia Syndrome
  • Adrenal Stress Syndrome
  • Reactivated EBV (Epstein-Barr Syndrome), or HHV-pick a number (Human Herpes Virus, of which there are quite a few varieties)
  • XMRV (Xenotropic Murine-Leukemia Related Virus) – the new retrovirus that seems to play a part (or not, depending on who you believe)

It’s not bad enough that you get really sick, you’re exhausted constantly, in pain pretty much all the time, and suffer from cognitive impairment (“brain fog”), but you have to learn all this new medical lingo, while suffering from short-term memory loss, and become your own Patient Advocate!

A Patient Advocate is someone who represents the patient, goes to doctor visits, keeps track of meds & their side effects, tracks test results, tracks down new doctors and investigates new treatments, studies the latest developments and passes this information on to doctors, arranges for tests and appointments, keeps lists of symptoms, etc. An excellent discussion of what a Patient Advocate does is at the CFS Patient Advocate’s Blog.

But most people will not have a Patient Advocate – they will have to learn the lessons the hard way.

There are many websites out there that give good information on what CFS, etc. is, though, really, that is a constantly changing thing, as scientists are learning new things all the time. And the shear number of sites can be overwhelming – especially since many of them are really supplement companies trying to peddle some herb or other nutritional supplement which they claim will cure your illness.

So, I decided to start a series of posts in a new category: “Ash’s Advice,” which is not an attempt to replace the many comprehensive, medically related, websites, but to pass on some of the often hard-learned lessons of being a patient with any of these illnesses.  I’m going to try to keep these posts short, since 1.) It really makes my back hurt to use the computer, and 2.) If you’re a patient, dealing with cognitive & memory issues as I am, info needs to be short and to the point.

Topics I hope to get to will include:

  • The importance of finding a good doctor, and how to find one. And what makes one good and another merely sufficient.
  • Dealing with your doctors
  • Lab tests you should insist upon – and what to do if your doctor disagrees
  • Learning the lingo
  • The Best Sites for Info on different topics
  • The usefulness of blogging & Facebook
  • Helping your family & friends understand
  • And lots of other things that don’t come to my currently mostly-blank mind.

And that’s the end of part one!

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One thought on “Ash’s Advice: Part One of Many To Come

  1. Good idea. Just about everyone can use this kind of information. Sometimes it gets so frustrating and complicated just to keep up with all the medications and to tell if the Dr. is paying any attention to what you are trying to tell them about how you feel, or if they understand what you actually have. If it is so hard to deal with just your regular ever day illnesses, it is wonderful to have someone that knows how you feel and understands the puzzle of dealing with all the medications and just life from day to day.

    Hang in there and keep up the good work.

    Like

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