Friday, February 26, 2010

The XMRV controversy continues.... 

Well, now we have a third study reported in the past two months that casts doubt on XMRV as the primary cause of CFIDS. Article courtesy of the CFIDS Association of America newsletter:

Playing A Weak Hand Well

I suspect that CFIDS is multi-causal, or that there are different types of it, just as I feel strongly that there is more than one type of fibromyalgia. I think eventually, these will be categorized as different ailments, such as Sudden Onset Fibromyalgia or Post-Infectious CFIDS. They all seem to have the central sensitization spectrum in common, but the outcome is quite varied. I hope that because XMRV is not a certainty that the medical community doesn't go back to labeling CFIDS as a psychosomatic condition.

Sunday, February 14, 2010

Have a joyful heart day! 


Tuesday, February 09, 2010

The depths of Myalgic Encephalomyelitis..... 

Got this from the Hummingbird's Guide to M.E. newsletter. You think this ailment isn't serious? It was for this woman.....

Lynn Gilderdale's moving account of why she decided to end her life

One of the most frustrating aspects of this and similar illnesses is that it is mistakenly believed to be caused by depression, rather than the other way around. It is the not being taken seriously, the unrelenting agony, the isolation, the dependence on others for basic needs, etc. that wears one down and creates the deep hopelessness. It is truly heartbreaking that some are never able to escape the eternal sadness.

I perhaps don't mention enough how truly lucky I am to be for the most part depression-free. This is not to say I don't understand where Ms. Gilderdale was coming from; in fact, some would be shocked just how dark my world gets sometimes. But I am not nearly as severely affected as she, and I got to marry and be happy prior to becoming ill; perhaps that is what enabled me to make peace with my ailments and to be so willing to carry on despite them.

Thursday, February 04, 2010

Listen closely to the lyrics.... 

Rob Thomas wrote this about his wife, who has lupus....

MORE rheumatologist and insurance company woes! 

My regular rheumatologist is on maternity leave again. My December appointment was canceled, and the earliest I could see her after her leave is end of June. Not acceptable as I'm supposed to see her every four months and the last visit was August 2009, so I agreed to go yesterday to the rheumatologist that's filling in, someone I already have a rocky relationship with.

The fill-in doc three years ago disagreed with my Sjogren's diagnosis, insisting I have a repeat lip biopsy (instead I had the original re-confirmed by the Mayo Clinic) and telling me that strenuous cardiovascular exercise would cure my fibromyalgia. Needless to say, I didn't go back to her. But here I am, hoping we can just note that I was there, refill my current medications, schedule the tests my regular rheumatologist wants and then I can be on my merry way.

Naturally, she sees "fibromyalgia" on my chart and ignores everything else. She proceeds to try to talk me into going on Savella, despite that it is noted in several places that I have unfavorable reactions (including permanent brain damage) to ALL types of anti-depressants. She was skeptical of the fact that I cannot tolerate dozens of medications.

Then we do the physical exam. She asks when I fractured my back. I never have, but she confused the compressed disc noted on my chart with a compression fracture.

She asks if I am exercising hard enough to elevate my heart rate, and I reply that I am not able to tolerate that but do six days per week of less intense workouts. She insists that only vigorous exercise will generate enough endorphins to conquer my pain. I wasn't gonna get into that argument again, so I gave her my best fake smile.

Luckily, because I am not her patient, I was allowed to stay on my current medication, and she set up the usual blood work. But then she dropped the bomb: the rheumatology office, which is the only fully functioning one in town, will no longer be accepting my new insurance! I already know that if I go back to the Mayo Clinic, where an excellent rheumy offered to take me as a patient, that it won't be covered either, and I cannot drive myself the three hours to get there, and my husband can't get the time off work to take me anyway.

So then I go to do the x-rays that had been scheduled. Came to find out that my new insurance won't pay ANY of the cost for them! My choices are either to pay full price on a $5000 out-of-network deductible at that location, or go to a facility my doc doesn't contract with and pay full price toward a $2500 deductible!

I decide to go back to the rheumatologist's office and see if I can get an order for the other imaging center. They hand me a filled out form and tell me I will need to call the other hospital's scheduling center myself. I was exhausted and said fine, and went home to get something to eat since my glucose levels were probably low, and the only place I have a phone is in my house.

Had a quick bite to eat and called the imaging center. They asked when the order was faxed because they couldn't find a copy. I said I had it, and they told me to fax it because they wouldn't schedule anything until they'd seen it first.

I told them I don't have a way to fax from my home, and they said to contact the rheumatologist's office again. I did, and was asked what the imaging center's fax number was, and of course I'd forgotten to ask. The receptionist grumpily said she'd see if she could figure it out and said I'd get a call.

No call, yesterday or today. And then when I was putting the x-ray order form back in my purse, I saw a note on it that said "previous compression fracture"! Now I can't decide which is more useless, the doctor or the insurance!

I am generally a pleasant person. I don't enjoy stirring up trouble, and am more than happy to comply with REASONABLE doctor's orders and REASONABLE insurance exclusions. But I only recently finished paying a two-year-old Mayo Clinic bill and am still paying on the surgery my husband had last year, and I can't afford anymore outrageous charges.

I already checked into what assistance I might be eligible for, and the answer is none, not in the state of South Dakota, anyway, because my husband is employed. His income is tiny, but we live in one of the poorest states in the US, so there are many who are much more truly needy than we. The curse of the lower middle class.

At the moment, though, I feel as though I deserve a bailout - from reality.

Wednesday, February 03, 2010

What part of "exercise makes me sicker" do physicians not understand? 

Post-exertional malaise, a phrase well-known to those with certain chronic ailments, is REAL, despite the medical community's doubts. Here are the results of a study of CFIDS patients vs. sedentary but healthy controls....

The Hallmark of CFS

Just yesterday, a rheumatologist was urging me to exercise hard enough to elevate my heart rate (more about yesterday's events in a later post). She seemed to think I was holding back because of pain, when in fact it is the fatigue and shortness of breath that occur afterward that prevent me from engaging in vigorous cardiovascular workouts. I told her this, but she ignored me.

Tuesday, February 02, 2010

Ideas for menstrual migraine relief.... 

What to do for those horrible hormonal migraines? There are actually some excellent natural solutions here....

Migraine Headaches in Women and Celiac Disease

So I guess I'm not the only one who gets a week-long migraine like clockwork that nothing will stop. I may look into some of these remedies as I have tried everything else.

As if the digestive symptoms weren't bad enough.... 

The range of symptoms from celiac disease can be truly mind-boggling. This from celiac.com....

Migraines, Carpal Tunnel Syndrome, Depression, Personality Change,and Psychosis Common in Celiac Disease

Well, I can vouch for the migraines, carpal tunnel and neuropathy, anyway. I find it rather unnerving that the neurological problems are not helped by a gluten free diet.

Genetic links between various autoimmune diseases.... 

If you have celiac disease, you may be more prone to certain other autoimmune disorders but also LESS prone to others. This article sorts it out....

GWAS Meta-Analysis Supports Existence of Autoimmune Clusters

I guess it's nice to know that one can't necessarily get ALL the autoimmune ailments at once, heh heh. It's bad enough when we get more than one.

Monday, February 01, 2010

Who knew ice could be so gorgeous? 

Got an e-mail of some beautiful icebergs that said they were in Lake Michigan. Checked it on Snopes and found out they were actually taken in Antarctica. Here's a link to the original pix:

Icebergs - Australian Antarctic Division

Now, if the ice and snow in my yard were half as breathtaking, maybe I wouldn't complain so much, heh heh. But then, I can't handle the minus thirty degree temperatures here, so I probably wouldn't be suited for even colder weather there.

Ready for "LOST", Season 6? 

I am! Here's an interview with the show creators....

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