About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Monday, April 2, 2012

You Never Get a Second Chance to Make a First Impression...

So doc, what do you  really want?

What to do?  Later this week I have an appointment with a head honcho at a major university medical center, a huge guy in the insomnia/sleep field.  As much as I'm hoping and praying for miracles and as much as I try not to get my hopes up, I just know we are in for a huge let-down.  On the other hand, all bases need to be covered since I am getting too old and too sick to deal with this huge sleep disorder without real help. I am really, really desperate. I don't want lip service.  I simply cannot afford it any longer. 

In earlier posts I wrote about the importance of first impressions with anyone in the medical field and just how important the almost superficial factors can influence the care you may receive, unfortunately.  On the other hand, I've also written about how you really do NOT want to look too good (if at all!) when going to a doctor because of the "fooling" factor.  On the one hand, I strongly believe my doctor needs to see what I really look like and what insomnia is doing to me, with no cosmetic concealer hiding the worst of the damage.   

However, on the OTHER hand, I've seen doctors who are .... humm ... well, just plain nuts, to put a nice spin on some experiences I've had.  One HUGE expert in CFS (and with him I'll use the dreaded and hated title because he does NOT deserve the "enlightened" title of CFIDS nor ME with his name) had so many facts wrong in the follow-up letter he sent me after my appointment that at first I thought he'd put another patient's letter in my envelope by accident. Understand, months in advance, his office sent me a questionnaire, along with a "request" for a multi-thousands of dollars check, due thirty days in advance, or no appointment.  I didn't really have a huge problem with the payment because I knew that a 35-year history of this illness was complex and how much money had we already spent on so much testing, treatments and so forth over the years?  Actually, because the questionnaire was so comprehensive, at the very least twenty pages long, asking every obscure question imaginable, down to even my grandparents (which impressed me to no end) and mailed to the doctor a MONTH in advance, gave me high hope that finally I'd found the right person. Wow!  He'd really be familiar with all that had happened over the decades.  The questionnaire was so long and complex that I could only answer a few questions, my brain fog, pain and a myriad of other problems forcing my hubby to supply and write down most of the information, which I then edited and checked over a period of a few weeks.  The FBI under J. Edgar Hoover was less thorough.

The mistakes in the evaluation letter were big as well as small.  Many were ones that would not have been made had he read my history, that is the answered questionnaire, while dictating his letter, or had he really listened to me in the first place as I spoke, actually listened to the answers I gave HIS questions and then had he jotted them down on paper during that infamous visit instead of trying to impress me with his new tiny laptop which he spent way too much time piddling around with as he tried to enter information. Furthermore, yes, I have brain fog.  Because my brain is so befuddled when I speak, as well as my well-established position in the strong belief of a health advocate, as well as for there to be no misunderstandings, my daughter and hubby were there with me to fill in anything I couldn't remember or was unable to answer.  This had worked well in the past, after all.

To make things worse than the huge number of errors in the objective aspect of this whole consultation, this doctor made very uncomplimentary comments - in the letter to ME - about my appearance that I shudder to think what he might have written behind my back had I given him permission to send any correspondence to any other doctor.  For example, I had worn a very simple, loose black dress because I was given instructions to wear loose comfortable clothing - evidently there was to be movement involved (there wasn't).  And I wore no makeup precisely so that he could see my true coloring but instead he wrote words in my report which basically read that I was a lazy, plain-looking woman who could not be bothered getting dressed up for him, nor putting on any makeup for him, and saying in fact that because of this, it was his opinion that I was depressed.

On the other hand, the next-to-last sleep doctor I saw said I was a very attractive, well-put together female who appeared NOT to be depressed as my hair was well groomed, I was dressed nicely and I had make-up on.  He added "slightly-overweight" and since I was, I had no qualms about him adding that. It was honest and I liked that.  Unfortunately, he'd never even heard of melatonin.

So, what to do?

Maybe I should just bring pictures to this new guy, give them to hubby and have him ask the doctor which he'd rather see, the good ones or the bad ones, as I sit behind a screen so he never sees me.  No touching is needed, after all - how many neurologists bother seeing what your reflexes are, or CFS doctors want to see if you also have trigger points, if your lymph nodes are swollen and so on.  Heck.  Maybe our appointments should just be by Skype, something that some of the younger doctors are seriously considering, insurance companies are pushing, but scares the HECK out of me.

What do you think?


  1. Hi Irene. I found your blog through Treya's blog. The sleep problems really are the worst of the CFS, that is fer sure. I hope you find some help and relief, and I look forward to hearing how it goes for you. Some CFS sufferers find insomnia relief from low dose Trazadone (50 mg). I haven't tried that yet. I'm so spooked by meds, in general. Sometimes though, I'll take a low dose Valium (5 mg) to relax me enough to fall asleep which gives me a few hours sleep before I wake up in the middle of the night. Sometimes I can fall right back to sleep. I won't take the Valium more than every few days because I don't want it to stop working and I don't want to get addicted. So far so good, as I've been doing this for 14 years. Melatonin, valerian, etc., don't do squat for me. Once upon a time I tried an Rx of some sleeping pill (Lunesta, I think). Hated it. Sometimes I took the over-the-counter Simply Sleep (Tylenol PM without the Tylenol), and it helped until it started upsetting my stomach so I stopped. Oh well.


    1. Hi Judy! So nice to meet you, though sorry about the WHY! As it turns out, I wasn't able to go to the appointment. So sick I couldn't stand and kept falling, legs giving out, the whole bit. We hope to reschedule (again!) and then to also book a hotel room for the night before and after the appointment. Crazy since it's only a 90 minute ride by car, but...
      Unfortunately, the night meds are a must in my case. Will talk about it later in a post. I think you are wise to take just the bare minimum you can....BUT that's just my own opinion!!! Understand the Lunesta...it was almost fatal for me. But I do have to take others.
      Yes, this sleep problem is more than a problem. It affects your entire life. I do hope you'll find help here or somewhere else... Just hang in there - how easy to say that but, hopefully, it helps to hear it coming from a "fellow- sufferer."
      Take care of yourself!

    2. That's an absolutely horrendous experience with a doctor. I don't think I'd go back to him. Criticizing your appearance instead of dealing with your medical problems puts him immediately on my Do Not See list.

      Since this is very expensive anyway, why don't you find one of the known physicians who treats people with ME/CFS? There are a number of them in different locations, Dr. Cheney, Dr. Petersen, Dr. Levine, Dr. Klimas, Dr. Enlander and more.

      At least they know what the symptoms are and various medications needed. This would not be a mystery to them and they try different solutions. They do understand the sleep disorder problem.

      I would do that -- unless you find an understanding and knowledgeable and non-arrogant doctor -- and not deal with the frustration, misunderstanding and condescending attitudes.

      I just knocked myself out cleaning my apartment, which I never do, and all of the symptoms you describe above descended upon me. I can't do anything now.

      Lunesta was horrible for me. I tried it a few times and could not stand up, had to hold the walls and felt like I'd fall on the floor. A half of one made me dizzy, unable to walk around or take a shower or prepare food so that doesn't work for me.

      People take a lot of different things for the sleep disorder, from Ambien to Klonopin to Doxepin to Elavil and more.

      Valerian did nothing to me and I won't take Melotonin as there are warnings for people with immune disorders.

    3. Kathy D, welcome!  

      I usually try to stay positive and upbeat, but bringing back the experience of "that" doctor still does damage to me, and I certainly would never, ever, consider going back to him.  In fact, in my nightmares I've often wished there were some place I could get him investigated.  I worry what harm he may be doing other patients with the opinions and so-called knowledge he may be providing, given my experience with him. And don't forget, I had two witnesses with me, so it wasn't brain fog at play here. 

      Actually I should have run the other way the moment I saw him.  It was a bit (!) of a mix-up that I did see him at all.  Think back to the doctor with whom you were upset enough to have written a comment to. (Hint! Hint!  Hint!) There you go!!! I though I WAS going to one of the best CFIDS specialists - his "partner." Furthermore, I thought I was seeing the first doctor you mentioned above. Unfortunately they had split up and somehow there was a mix-up. I wasn't seeing the CFIDS pioneer, but this rude and not very knowledgeable person.  He may look good on paper, but in real life, he is not THAT exceptional.  I learned nothing new, I was given no real advice there in his office nor in his follow-up/recommendation letter. 

      I've seen many of the "best" specialists in the CFIDS world.  I have had some really excellent care.  Yes, I am a case that is so complicated that some of the best are trying awfully hard to manage my care.  But oh my yes, I HAVE been, or at least been in contact with, the best, one way or another.

      BTW, one teeny tiny aside since you mentioned melatonin.  I was taking 3 mg of melatonin, along with the rest of my arsenal of meds. HE thought I should up it to 9 mg.  Scary.  

      I've not told you all of the bad.  But my hope was that by knowing some of what I'd gone through, you'd feel encouraged/strengthened by the fact that you wrote that brave comment to his blog (?).  I'm very sorry that you missed that message.  I probably wasn't clear enough in my  comment on your blog.  I'm glad you told him what you "objected" to.  Too bad he can't hear anything but his own voice, an ineffectual and damaging one at that.
      Thank you, Kathy D. I do hope you return to this spot. Btw: loved the asides on all those "fun" book titles!  And I hope we don't have to go into such dark issues as what was said just now. On the other hand, the "bad stuff" needs airing too when need be.