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Using All The Spoons

Using All The Spoons

I think I’ve said that flare-ups suck donkey balls.  I’m fairly certain that I’ve said it, but if not, I’ll say it now.

Pain flare-ups from Fibro suck donkey balls.  Especially when said flare-ups last more than just a few days or a week.  I’m going on a little over a month.  Feels like it’s getting worse instead of better.  I can understand why some who have Fibro turn to narcotics or to medicinal Mary Jane.

I’ve been in such a bad pain flare-up that I just can’t seem to get out of it, and I’m having trouble now caring about how I handle it.  Not caring about avoiding trigger foods; it’s an effort to ignore the danger foods at picnics and as a guest at someone’s house.  Not caring about how much pain I’m actually in as long as I can rest and not think about much.  Reading helps.  I doze if I watch TV.  The chronic fatigue hits badly during this flare.

I can’t even muster up enough energy to feel discouraged.  My body is tired, my brain is tired, and I’ve been feeling Mom Guilt over not being available for all of the girls’ school things the way I should be.  The way I promised I would be, and I promised wouldn’t change when I went back to work.  I never imagined my weekends would be for recovery and I would dread going out anywhere most times on a weekend, especially on a Friday after work.  I dread going anywhere on a day after work.  I’m off today, though, to attend a PPT and for another appointment.

Since starting work again, my social life has definitely tanked.  I’m just too tired.  Friendships have suffered.  My wallet enjoys the paycheck for sure.  So do our groceries and bills.  But I’m nearly too tired for anything else.  Gracie frequently asks me when my boss is going to fire me.  My youngest, 9, recently informed me that she also hates it when she’s home and I’m not there to greet her off the bus.  The girls are all three of them upset that the “new” routine of 19 MONTHS now means I’m not home as much as they’d like.    They’re upset that I’m in more pain more often, and it seems to them I’m more tired all the time.  I probably am.  So, you know, Mom Guilt.  Especially when I have to send The Husband in my place.  The sad thing? The girls are getting used to it and don’t complain much any more when I’m in so much pain or feeling so sick from the pain that I can’t go with them all.

Weekends are usually used, when possible, to recover from the week.  I try to take it easy and do what needs to be done at a leisurely pace.  Of course that isn’t always possible.  The flare is not going away, and I wonder if my inability to have any sort of recovery time is to blame.

The past two or three weekends were unheard of.  Just on Memorial Day weekend: two birthday parties and a barbeque, one party for each day of the long Memorial Day weekend.  This weekend we had my beautiful niece “Kay” sleep over and she’s just a joy to have around no matter what.  Thinking about her is making me grin while I write this.  Then Sunday after bringing her home, we celebrated three more birthdays and stayed out all day long.  I overdid it both weekend.

I did wake up with a new pain in my right shoulder which could be due to being manipulated and maneuvered by my PCP yesterday at my physical.  I could have slept wrong last night, but in any case it’s there.  Sharp.  Worsens when I walk or move my left arm (what???) or turn my head or try to flip pancakes.  I’m going with “happened during the physical because of how she made me position myself.”  OH!!! I’m so special that she likes to see me for an annual physical every six months now.  ::sigh::  But here’s why I love her: she has clearly done a lot of homework regarding Fibromyalgia.  She wasn’t quite as knowledgeable the last couple of times I saw her.  She was ok with the knowledge but a lot of it had been somewhat outdated.  This time she was on the ball and up-to-date and far more compassionate.  She’s always been compassionate but she was able to connect so many issues I’ve had for years and asked me a lot of questions and said,

“Oh, don’t blame yourself on this.  It’s the Fibromyalgia.  You try.  You work hard.  But you still have the Fibromyalgia and that makes it harder.  I’m not worried about your weight.  Maybe you now pay attention and eat more calories and get more fat… your body is making too much sugar and you don’t get enough calories.  But you eat right, you are active and you work and spend time with your family.”

I do love this doctor.  She’s really good, with a great bedside manner.

I was so anxious about going to that appointment.  I always have anxiety going to my physicals.  When I walked in yesterday it was an increasingly high pain day, and she noticed.  I think everyone noticed.  I think I’ve fooled myself into believing that when I’m having breakthrough pain, pain that my Gabapentin can’t reduce my daily pain to “still hurts but is tolerable and can be ignored,” I can still hide the face that I’m having severe pain.  Pain that, if I weren’t taking the Gabapentin I would be writhing on the floor crying.  Anyway, she noticed and was very gentle and I could see the compassion on her face.  I didn’t see that compassion on my rheumatologist’s face.  I’m still certain that my rheumatologist thought I was drug-seeking.  Luckily my PCP knows me and has since I was 25.

We actually talked about that yesterday: pain management and being fearful of looking like a drug-seeking addict.  She turned to me and said,

“Don’t ever say that.  You need to manage the pain.  Pain is not good for the rest of your health.  If you’re in pain, you can’t be healthy or do anything.  Besides, you went far too long to even ask for help managing your pain. ::scoff::”

And then I remembered how she has tracked my pain, and how when I asked her how to go about diagnosing and getting a rheumatologist, etc, she chastised me for waiting so long to ask for help managing the pain (gently and like a mother).

I know, pain is a bummer of a topic but hey, it’s sort of in my face right now.  It’s not really a bootstrap moment.  But that’s another blog entry.

I know I have a lot to be grateful for.  I’ll even do a gratitude journal, which I haven’t done in a long time.  It’s not about not being grateful.  It’s not about not counting blessings.  It’s about, well, the nature of depression, anxiety, and the pain that came and triggered it.  The pain is just so much to deal with that I think when it gets this bad for so long, my brain breaks a little bit.  My word recall and memory are sucking wind.

Hell, just do a search in my search bar for “fibro fog” and Fibro and you’ll find a mess of stuff about why I feel this way in my brain.  My brain is so foggy right now I don’t think I can go through the whole fact thing again and repeat it in this entry.  It’s already taken me five or six stops and starts and several revisions on this entry.  :-)

I know I’ll shake it off eventually.  For now I think I need to feel this.  I need to go through it and cycle it.  I make great efforts to remain positive as long as possible every day, but I admit that it’s much more difficult when the pain is so high and I lose hair in handfuls from the flare up, sometimes three times in a week.  Maintaining the positivity and the hope for extended periods of time… well… that can feel fake and make the anxiety and depression feel worse.  But then I don’t want to bring anyone else down.  That feels stressful and… I snap.  And I know I’m not as nice as I should be.  I find it harder to censor my brain-to-mouth stuff, and people look at me funny.  Well, half the time it’s probably because it came out with words in the wrong order or I stated the definition of a word instead of the word itself.  But with my nice-filter off… oh, I’m not nice.

I can be vicious.  I don’t like being vicious.  It’s worse if I feel as if someone has personally attacked my character and motives.  It’s much, much worse if I don’t get my morning coffee.

Pain, pain, go away, come again, like, never.

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Source: https://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&docid=NuIqSZjxBauA8M&tbnid=S6HgtM3YkTX2-M:&ved=0CAQQjhw&url=http%3A%2F%2Fhittingthewall.paulglover.net%2F20130509-fibromyalgia-awarness-day-2013-show-someone-in-pain-you-love-them%2F&ei=QSgwU-n5OcK0yAGF8oGwCA&bvm=bv.62922401,d.b2I&psig=AFQjCNEOFLYng877JZKQ1bt8jREYuBaWug&ust=1395751334502767

Fibromyalgia Awareness: Pain Flare Up

I’ve been working my way through what feels like an endless flare and as each day goes by, it seems harder and harder to get through.  Of course I still get up each day and as each individual day goes by, the day is harder to get through.  It’s par for the course, really, but this has been a really long flare that’s been going on for well over a month.  I’ve had mini-flares within the flare.  Weekends let me know just how badly I’m really taking care of myself during the week by slamming me with the CFS.  I wish I could give in to it, but 3/4 of the time I really can’t.  When I do, it’s sweet heaven and drifting into sleep, pained as it is, gives me the only relief I can get sometimes.  I’m still on a half dose of my Fibro med and have about seven days left on it before I can titrate up.

But now? During this past week specifically? The CFS is starting to kick in during the week.  I’m having worse trouble in the mornings not just getting up out of bed (that’s always a given) but waking and shaking off the grogginess.  I’m afraid it won’t be long before I can’t hear the blaring alarm that’s next to my head nor feel the vibrating phone alarm under my pillow.  I’m feeling the CFS at work now.  I’ve been successful in shaking it off at work, but I’m worrying about reaching a point where I can’t shake it off so that I might not be able to drive home. I already keep my cane close by and use it frequently.  During my flares I use it nearly constantly.  My balance is much worse; I can fall over out of nowhere for no reason; my sciatica gives me bursts of searing pain and completely goes out on me; I get other back pain and myofascial pain and other random pain that requires the support of the cane so that it helps ease things.

I was out at the store a week or so ago to run an errand and a lady came up to me to tell me that she used to use the same cane.  It’s purple with colorful flowers all over it.  I thought she was coming over to be nice.  Then she said,

“I was at a therapy session one day and my physical therapist saw my cane and asked me why I used it.  I told him why and his response to me was to throw it away and just stop using it.  And do you know he was right? It was the best thing I ever did.  You should do the same thing! It will be the best thing you ever do! You’re too young to use a cane!”

The smile that I’d had on my face must have faded instantly and I must have had daggers suddenly shooting out of my eyes, because the smile she had been showering me with faltered.

“That’s so nice for you.  I don’t suppose you have Fibromyalgia like I do.  I wish I could just throw away my cane.  I’ve done physical therapy but it not only didn’t work, it made my chronic pain disorder worse.  The cane helps me relieve some of the pain, but without the cane I wouldn’t be able to rely on my balance and I would fall more often.” 

Then I saw a light bulb.  I had been afraid I would see a slack jaw.

“Ah, I have a friend that has Fibromyalgia.  My mom, God bless her, had it too.  I understand.  Bless you.”

Then her smile returned and I felt at ease again enough to return her smile.  As I continued shopping I started to feel a different kind of unease and my frustration returned because I kept turning that incident over and over in my mind.  As I’ve gone over the past week (or more) I’ve continued to think about it.  I’ve been trying to figure out why it continues to nag at me.  It’s more than the immediately apparent unsolicited advice.  It’s more than the rampant incorrect assumptions being dumped all over me in that exchange that lasted all of 3-5 minutes.  It’s more than how quickly a seemingly positive random interaction soured.

Then throughout the past week or so, I found that I was paying more attention to how people respond when they realize I’m using a cane or I’m in visible pain.  When they can “see” my invisible disability by proof of the cane they’re very polite and smile and will give way.  People sometimes will offer to give me their place in line if they see I have fewer items in my cart/basket.  People are even more compassionate if I have my girls with me and they’re on their best behavior with me.  If I’m feeling tired and I’m sure it’s on my face, again, people are even more compassionate.  If I’m moving slowly, carefully, and purposefully, people are kinder and gentle.

But only if I’m smiling.  Only if I don’t let the pain visibly show too much in my face and posture.  Only if I can manage to control vocalizing unexpected bursts of severe pain that take my breath away.  Because if I’m not smiling… if I look like I’m ready to cry… if people can see just how much pain I’m in and maybe even hear it then the discomfort is palpable.

As it turns out, my pain and discomfort and feelings of sickness due to the pain aren’t really about me.  Of course not, why would my disability be about me? The things I go through are about everyone else.  I’ve always known this on some level, but I didn’t realize until recently just how much.

I can’t just deal with my pain and try to get through it.  I have to help others through my pain as I’m trying to cope with it myself.  I have to reassure them and explain it to them.  Until I thought about it, and thought about specific recent incidents in a new way, I didn’t realize just how much effort it takes to put up the appearance that my pain isn’t nearly as bad as it is even when it’s so bad that I can’t hide it and it breaks through and takes my breath away and I shriek.   I realized that I could not only see the discomfort others feel over my pain but that I was actively pushing against it trying to care-take others’ feelings and worries about my obvious pain… even strangers.

I reassure people that I am, in fact, all right (fine, even) and “this is normal for me.”  Because somehow, if “it’s normal for me” then I must be used to it and I must have a high pain tolerance.  I do have a high pain tolerance, but come on.  Pain is pain.  Severe pain is severe pain.

People will ask with fear, “Are you all right?” and I can tell that they’re hoping I’m going to minimize the situation, brush it off for them.  It’s rare that I tell the truth about how bad it is.  It’s par for the course.  It’s my normal, yes, and I have to get used it.  I have to endure it. Even when my baseline pain increases, I just have to get used to it.

I have to say I’m fine because it’s expected.  No one wants to hear the details of pain or what Fibromyalgia is like or what it means for my life and my family.  No one wants to know what struggle it is for you to even be standing up right in that moment.  You suddenly feel like you’re that elderly relative that’s asked how they’re doing and they give you the laundry list of every single ache, pain, illness, bowel movement, skin tag removal, kidney stone, colonoscopy, and family gossip because you see That Look come over the other person that lets you know they just don’t want to hear it.

Except I’m not really all right. I just can’t let anyone know how “not all right” I am because pain like this? Nonstop, constant, chronic pain that has severe flare ups? It’s taboo.  I’m not really supposed to say, “No, I’m not all right.”  If I say that then that implies, apparently, that I have expectations of other people to actually physically or verbally or emotionally help me and I shouldn’t impose that on people when it’s not their business and they don’t know what to do.

Maybe that’s what’s most uncomfortable for other people.  It’s uncomfortable because they don’t know how to make it better (they don’t have to make it better), they don’t know what to say or do, they don’t know what’s appropriate because there’s no rule book.  If someone else’s pain can’t be easily soothed because it’s more than surface pain (or what I call Less-Than-Labor-Pain Pain or for men to relate, Less-Than-Kidney-Stones-Stuck-In-Your-Urethra-Pain Pain that never, ever stops) this “look” comes over someone’s face.  This look that says my pain is not only uncomfortable emotionally for them but it’s an inconvenience.  I’ve put them into a position where they have no choice but to think about and deal with something that they haven’t ever had to think about before.  I’ve put them into a position where they can’t actually help.  I’ve put them into a position where they have to witness someone else’s pain and discomfort and yes, agony, and they don’t know the right thing to do.

 

What’s right is:

  • Please, try not to make someone else’s disability be about you
  • Please remember that those of us who have chronic pain are not lazy or making it up
  • Please don’t judge us as drug seekers… we are trying to relieve pain that causes many people to commit suicide; and if we are on pain relieving medications, don’t assume that we’re addicts.  If the medications work in some manner then they’re doing their job
  • Please remember that we are not intentionally inconveniencing you no matter how frustrated and annoyed you may feel over our pain
  • Please understand that we are not choosing this and if we had the choice we would make it stop forever and ever, Amen
  • Please know that without a doubt, we have tried every natural non-narcotic remedy that we can think of because we are desperately afraid of the mere whiff of appearing to be a drug seeking narcotics addict even if the pain relief medication/s we take are not narcotics nor addictive
  • Please remember that as uncomfortable as you are about someone else’s chronic severe pain, that other person is far more uncomfortable than you are 24/7
  • Please treat people with respect… not just people that have disabilities, but all people and that way when you see someone that has a disability you don’t have to wonder how you’re supposed to treat them
  • Please don’t apologize
  • Please don’t assume that you’re required to help unless we ask you, but we always appreciate heartfelt offers of help
  • Please be compassionate

 

Do I sound bitter? My apologies.  This flare up over the past nearly-two full months is having an effect on me that’s not pretty.  I’ve had ever-increasingly worse CFS due to the pain.  I think I said that already.  Fibro Fog is sort of chucking me on the chin here.  It’s easy to tire because the pain comes on so badly that all my body wants to do is attempt to sleep in order to escape.  Soon I’ll be allowed to titrate up from the lowest dose of the medication I’m on, which should help, so I pray that my insurance won’t take the stance that I’m a drug-seeking addict even though my prescription isn’t for a narcotic.  You know, because they’re idiots.

After all, I have laundry to do.

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Major brain structures implicated in autism.

Major brain structures implicated in autism. (Photo credit: Wikipedia)

There are probably hundreds of blog posts and articles and thousands upon thousands of Facebook posts regarding this specific article and reblogging it dragging it up as if it’s new and shiny and a huge blow to the medical community and Pro-Vaccination Supporters:  Courts quietly confirm MMR Vaccine causes Autism (source is “Whiteout”    click here).  It’s very misleading and the article ignores facts, as usual.  But this article and dozens like it are being spread around as gospel truth without fact checking.  I suppose what’s understandable is that most people that fall for what’s in that article is because they don’t really follow through and find out the facts.  People rely on those they trust to interpret these things for them.  They rely on assumptions that what they’re reading is true and correct and unbiased.  That it’s factual.  That it can be proven.  Scientifically, even.

The “court” that is referred to in the Whiteout article and ruled against vaccines for causing an injury was the Italian court.  Court rulings, especially from the Italian court, do not equal science.  No court ruling, if we’re being accurate, equals science especially if it’s not the specially set up Vaccine Court.  The judgment from the Italian court wasn’t based in scientific fact or forensics, but they’re not typically known for that.  Hell, they like to retry people who were already found innocent in their own court system if their prosecutor didn’t like the result so that he has another chance to try to prove them guilty (Amanda Knox).  They even found six scientists guilty and gave very severe sentences to all six of them for failing to predict an earthquake (2009 earthquake).  EVEN THOUGH it’s beyond the ability of ANY modern scientist to predict an earthquake.  An Italian court ordered a father to pay his 32 year old employed, professional daughter that still lived with him her allowance and since he had stopped paying her, and he was forced to pay over €12,000 in arrears plus reinstate a €350-a-month allowance.  My point is to take the original article for what it’s worth, which is less than nothing.

Additionally, the claim by the petitioner was  originally that Ryan Mojabi had Autism as a result of the MMR (measles, mumps, rubella) vaccine, but the Secretary of Health and Human Services did believe that he had Encephalopathy as result of the MMR vaccine.  Also, they ruled only that compensation is appropriate under their rules.

Regarding whether the MMR actually causes Encephalopathy ie. Enchephalitis ie. disorder of the brain:

…In the section Post-Marketing Reports, encephalitis (infection of the brain) was added to reflect the receipt of reports following ProQuad vaccination. Previously, this adverse reaction was listed under adverse events seen after MMR or varicella vaccination. Encephalitis has been reported approximately once for every 3 million doses of MMR vaccine. Post-marketing surveillance of more than 400 million doses distributed worldwide (1978 to 2003) indicates that encephalitis is rarely reported after MMR vaccination. In no case has it been shown conclusively that encephalitis was caused by a vaccine virus infection of the central nervous system. There was no proven causal relationship between ProQuad and any of the reported cases that prompted the change in the label…

SOURCE: http://www.fda.gov/BiologicsBloodVaccines/Vaccines/QuestionsaboutVaccines/ucm070425.htm

It sounds scary but even in cases where someone contracted Encephalitis/Encephalopathy after receiving the MMR vaccine, it can’t be considered a causal link.  One huge reason why is because Autism and Encephalitis are not the same aka Encephalitis is not Autism.  It may share some similarities but it is not Autism.  Encephalitis does not lead to or cause Autism.  Secondly, someone contracting a disease after they receive the vaccination against it is not proof that the vaccination caused the disease.  Other contributing factors are ignored.  Thirdly, someone showing symptoms of a disorder after receiving a vaccination is not, again, not proof that the vaccination caused the disorder.  Many times the signs and symptoms of Autism Spectrum Disorder NATURALLY do not begin to show persistently until the same time certain vaccines are routinely given.  In someone who already has ASD in their genetic code, it’s possible that vaccines could be one of the environmental triggers, sure.  That’s being researched by reputable scientists.  We saw a dramatic increase in symptoms and massive regressions when we moved house at the age of 18 months.  At the same time, we tried to take away the pacifier and and encourage moving out of the crib to a toddler bed.

There are many causes of Encephalitis.  The claimants ended up revising their claim to (paraphrasing) saying that the MMR caused Encephalopathy/Encephalitis that led to Autism.   However, in an U.S. court it’s very unlikely that they would have won.

Oh wait… more facts.  I love facts.

The The Encephalitis Society that’s based in the UK has a brilliant fact sheet about Encephalitis (go ahead, click here).  They clearly state their view on MMR vaccination:

Measles infection and encephalitis
Measles causes encephalitis in around 1 in 1,000 children. Measles encephalitis
caused the death of Roald Dahl’s daughter Olivia in 1962. He became an ardent
supporter of measles vaccination as a result of the tragic loss of his daughter. He wrote
a letter to parents encouraging them to get their children vaccinated (see copy of letter
attached). He dedicated James and the Giant Peach and the BFG to Olivia.
Other countries such as Italy and Ireland have had epidemics of measles in recent
years because not enough children have had the MMR vaccine. As a result, children
have developed encephalitis and children have died from measles in those countries.
Measles is also the cause of a disease called Subacute sclerosing panencephalitis
(SSPE). This is a rare condition that can develop some years after natural measles
infection. The average time between someone having measles to the fi rst symptoms of
SSPE is around 8 years. It is a degenerative neurological condition which progressively
destroys nerve cells in the brain almost always leading to mental deterioration and death.
Children are especially at risk of SSPE if they are very young when they catch measles. It
affects around 1 in 8,000 children who are infected when they are under 2 years old.
SSPE is not caused by the MMR vaccine. Measles vaccine and MMR vaccine directly
protect against SSPE.
Since the introduction of measles vaccine in the 1960s, the numbers of people
diagnosed with SSPE has decreased dramatically, and the death rate from SSPE is
expected to fall even further if measles remains under control.

Mumps infection and encephalitis
Mumps virus frequently infects the central nervous system. Before the MMR vaccine
was introduced mumps used to be the most common cause of admission to hospital
with meningitis or encephalitis, occurring in 1 in 200-5,000 children. It also causes
deafness. MMR vaccine has had a dramatic impact and hardly any children are
admitted to hospital with mumps these days. Outbreaks of mumps have occurred in
the last few years in older children and young adults who were too old to have received
the two doses of MMR vaccine recommended before going to school.

Rubella virus and encephalitis
Rubella virus causes severe brain injury in children if their mother is infected in early
pregnancy. The brain injury is caused by meningo-encephalitis, part of the “congenital
rubella syndrome”. Rubella virus can also cause a progressive “pan-encephalitis” later
in life in children who were infected in the womb and survived but remain chronically
infected. Before MMR was introduced cases of congenital rubella still occurred in the UK. We could not
control the infection when we only gave the vaccine to teenage girls because the rubella virus
continued to circulate in younger children, teenage boys and young men. The small percentage
of mothers who were not protected fully by rubella vaccine caught rubella, often from their own
children or their partner. The only way to be sure of protecting unborn babies is to stop the rubella
virus circulating in the whole community. Now this has happened, and it is one of the great
successes of MMR vaccine.
Few young mothers will have any personal experience of the effects of rubella today, which were
well known in the past. Agatha Christie illustrated it very well in her murder mystery story, The
Mirror Cracked from Side to Side. An actress murders the person she finds gave her rubella years
before when she was pregnant with her only child, who was born severely brain injured.
Charities such as Sense are campaigning to help restore MMR vaccination coverage to previous
levels (http://www.sense.org.uk/publications/allpubs/rubella/mmrmp.htm)

MMR vaccine
MMR vaccine is a very effective way to prevent measles, mumps and rubella. All three of these
infections are important causes of encephalitis, and before MMR vaccine was introduced all three
infections were common in the UK
There is a wide range of authoritative information available on the good safety record of MMR
vaccine (see http://www.mmrthefacts.nhs.uk/). The vaccine is unequivocally safer than letting
children catch the diseases. 

Useful and reliable websites
http://www.sense.org.uk
http://www.mmrthefacts.nhs.uk
http://www.hpa.org.uk/infections/topics_az/vaccination/mmr.htm
http://www.immunisation.org.uk/

The fact is that United States Vaccine Courts have not ruled in favor of claims that vaccines cause Autism Spectrum Disorder.  The reason is because there is no factual, scientific link.  There was no “black out” in U.S. media regarding the Italian court ruling because no one really takes the Italian court seriously except to ask, “What the ever-loving fuck were they thinking?”

Check this out:

After considering the record as a whole, I hold that petitioners have failed to
establish by preponderant evidence that Colten’s condition was caused or significantly
aggravated by a vaccine or any component thereof. The evidence presented was both
voluminous and extraordinarily complex. After careful consideration of all of the
evidence, it was abundantly clear that petitioners’ theories of causation were
speculative and unpersuasive. Respondent’s experts were far more qualified, better
supported by the weight of scientific research and authority, and simply more
persuasive on nearly every point in contention. Because of pervasive quality control
problems at a now-defunct laboratory that tested a key piece of evidence, petitioners
could not reliably demonstrate the presence of a persistent measles virus in Colten’s
central nervous system. Petitioners failed to establish that measles virus can cause

autism or that it did so in Colten. They failed to demonstrate that amount of
ethylmercury in TCVs causes immune system suppression or dysregulation. They
failed to show that Colten’s immune system was dysregulated. Although Colten’s
condition markedly improved between his diagnosis and the hearing, the experimental
treatments he received cannot be logically or scientifically linked to the theories of
causation. Given the advice that petitioners received from a treating physician, Colten’s
parents brought this action in good faith and upon a reasonable basis. However, they
have failed to demonstrate vaccine causation of Colten’s condition by a preponderance
of the evidence. Therefore, I deny their petition for compensation.

SOURCE: 
IN THE UNITED STATES COURT OF FEDERAL CLAIMS
OFFICE OF SPECIAL MASTERS
No. 01-162V

The decision made on the above-quoted court case has in fact been upheld since the 2009 ruling when appeals were processed and heard.

Here are additional U.S. Court Federal Rulings: http://www.uscfc.uscourts.gov/node/5026:

  1. Court Rulingas Dont Confirm Autism-Vaccine Link – Forbes.
  2. The General Medical Council to Andrew Wakefield: “The panel is satisfied that your conduct was irresponsible and dishonest” « Science-Based Medicine.
  3. Washington Post Article Regarding U.S. Federal Rulings
  4. Washington Post Article Regarding the Debunking of Wakefield’s Hoax
  5. Neurologica: Summary of the Court Ruling That MMR Vaccine Doesn’t Cause Autism
  6. The worst of times for antivaccine believers: Yet another study fails to show any link between the MMR vaccine and autism « Science-Based Medicine.
  7. One Thing We Know About Autism: Vaccines Arent to Blame (via National Geographic).
  8. The Hannah Poling case and the rebranding of autism by antivaccinationists as a mitochondrial disorder (worth noting with this one: Hannah Poling’s mother SHARES THE SAME GENETIC MITOCHONDRIAL DISORDER THEY SUED FOR « Science-Based Medicine.
  9. ‘The MMR-autism theory? There’s nothing in it’ Michael Fitzpatrick talks to Stephen Bustin, whose devastating testimony in a US court demolished the last shred of evidence against vaccines.| Dr Michael Fitzpatrick | spiked.
  10. Statistics Reports Directly from the Health Resources and Services Administration
  11. The Health Resources and Services Administration Vaccine Table (every parent and person who receives vaccinations should have this) AND the revision here 

In each of the U.S. court cases and rulings above, when appeals were heard, they were still denied as being unfounded.  However, this is very interesting to note in the Cedillo case, and I think it’s wonderfully compassionate because of the decision by the Vaccine Court:

….. “After studying the extensive evidence in this case for many months, I am convinced that the reports and advice given to the Cedillos by Dr. Krigsman and some other physicians, advising the Cedillos that there is a causal connection between Michelle’s MMR vaccination and her chronic conditions, have been very wrong. Unfortunately, the Cedillos have been misled by physicians who are guilty, in my view, of gross medical misjudgmentNevertheless, I can understand why the Cedillos found such reports and advice to be believable under the circumstances. 
I conclude that the Cedillos filed this Program claim in good faith….

DECISION
HASTINGS, Special Master.

This is an action in which the petitioners, Michael and Theresa Cedillo, seek an award under the National Vaccine Injury Compensation Program (see 42 U.S.C. § 300aa-10 et seq.2) on account of several conditions, including autism and chronic gastrointestinal symptoms, which afflict their1On October 30, 2008, petitioners filed a notice waiving their 14-day “waiting period” pursuant to Vaccine Rule 18(b) and 42 U.S.C. § 300aa-12(d)(4)(B). Accordingly, this document will be made available to the public immediately, as petitioners have requested.

2The applicable statutory provisions defining the Program are found at 42 U.S.C. § 300aa-10 et seq. (2000). Herein after, for ease of citation, all “§” references will be to 42 U.S.C. (2000). I will also sometimes refer to the act of Congress that created the Program as the “Vaccine Act.”  Daughter, Michelle Cedillo. I conclude that the petitioners have not demonstrated that they aren’t entitled to an award on Michelle’s behalf. I will set forth the reasons for that conclusion in detailbelow. However, at this point I will briefly summarize the reasons for my conclusion. The petitioners in this case have advanced a causation theory that has several parts, including
contentions (1) that thimerosal-containing vaccines can cause immune dysfunction, (2) that the MMR vaccine can cause autism, and (3) that the MMR vaccine can cause chronic gastrointestinal dysfunction. However, as to each of those issues, I concluded that the evidence was overwhelmingly contrary to the petitioners’ contentions. The expert witnesses presented by the respondent were far better qualified, far more experienced, and far more persuasive than the petitioners’ experts, concerning most of the key points. The numerous medical studies concerning these issues, performed by medical scientists worldwide, have come down strongly against the petitioners’ contentions. Considering all of the evidence, I found that the petitioners have failed to demonstrate that thimerosal-containing vaccines can contribute to causing immune dysfunction, or that the MMR vaccine can contribute to causing either autism or gastrointestinal dysfunction. I further conclude that while Michelle Cedillo has tragically suffered from autism and other severe conditions, the petitioners have also failed to demonstrate that her vaccinations played any role at all in causing those problems.” 

Regarding the Hazelhurst decision:

Hazlehurst decision:

The published articles on which petitioners rely most particularly are the Wakefield series of articles and the 2002 Uhlmann article (the judge here is referring to Wakefield’s hoaxed article in the Lancet). These articles were addressed in Section III.C.1 and Section III.C.4.e, above, and were determined to be scientifically unreliable. Dr. MacDonald testified about the problems identified by the scientific community with
each of the articles in the series of publications by Dr. Wakefield and his colleagues. See Hazlehurst Tr. at 629A-638. Dr. Bustin, Dr. Chadwick, Dr. Griffin, and Dr. Ward also testified about the published findings and the practices at the Unigenetics lab where similar findings were made; they addressed in detail the questionable test results reported,
the irregularities in laboratory test procedures, and the inability of accredited laboratories to replicate the positive measles findings. See Section III.C.4.g and Section III.C.4.e, above.

Dr. Corbier’s opinion regarding the role that vaccines play in causing autism is premised, in part, on studies that have reported a finding of measles virus in the tissues taken from the gut of autistic children. See id. at 327A. Dr. Corbier admitted during his testimony that if there were no evidence of persistent measles virus, his current position of vaccine-related causation would be “lessen[ed].” Id. at 416A

Because the linchpin of petitioners’ theory, the finding of persistent measles virus in the biopsied tissue taken from the gastrointestinal lining of autistic children, is glaringly unreliable, the basis for Dr. Corbier’s opinion that the MMR vaccine was causally related to Yates’ autism and his gastrointestinal symptoms is critically flawed and scientifically
untenable. Petitioners have failed to prove that their theory of vaccine-related causation is biologically plausible as required by the first prong of Althen. Nor have petitioners demonstrated that the unsupported links of their proposed causal chain cohere to establish a logical sequence of cause and effect as required by the second prong of Althen. Having failed to satisfy their evidentiary burden, petitioners cannot prevail on their vaccine claim.

Accordingly, the undersigned need not reach or consider any alternative theories of causation.

V. Conclusion
The Hazlehursts’ experience as parents of an autistic child, as described during the evidentiary hearing in this case, has been a very difficult one. The undersigned is moved as a person and as a parent by the Hazlehursts’ account and again extends to the Hazlehursts very sincere sympathy for the challenges they face with Yates. The undersigned’s charge, however, does not permit decision making on the basis of sentiment but rather requires a careful legal analysis of the evidence.

The parties have submitted a wealth of evidence and have presented the testimony of a number of experts who have extensive clinical and research experience in the particular areas of interest in this case. Having carefully and fully considered the evidence, the undersigned concludes that the combination of the thimerosal-containing vaccines and the MMR vaccine are not causal factors in the development of autism and
therefore, could not have contributed to the development of Yates’ autism. The weight of the presented evidence that is scientifically reliable and methodologically sound does not
support petitioners’ claim. Petitioners have failed to establish entitlement to compensation under the Vaccine Act. Absent the filing of a timely motion for review, the Clerk of the Court shall enter judgment accordingly.

So.  You’ll also hear that bowel disorders, which are statistically high in people that have Autism and other neurological disorder, are “linked to vaccines.”  Remember that this claim comes from Andrew Wakefield.  When he first claimed this his peers worldwide rejected his hypothesis and his findings as fraudulent immediately.  Do you want to know why it’s common for there to be bowel disorders in autistics? Because when the baby is still developing and the cells are forming, the cells that will become the brain and the cells that will become the bowels ARE RIGHT NEXT TO EACH OTHER and there’s a possibility that some of those cells were initially shared.  That also explains food sensitivities and allergies that are common in autistics.  The biological basis for this is factual, not supposed or guessed at.  I think I’ve written about this before.  And because I love to point out how Wakefield is a jackass that can’t be trusted:

The General Medical Council stated this in their actual report against Wakefield:

In reaching its decision, the Panel notes that the project reported in the Lancet paper was established with the purpose to investigate a postulated new syndrome and yet the Lancet paper did not describe this fact at all. Because you drafted and wrote the final version of the paper, and omitted correct information about the purpose of the study or the patient population, the Panel is satisfied that your conduct was irresponsible and dishonest.

The Panel is satisfied that your conduct at paragraph 32.a would be considered by ordinary standards of reasonable and honest people to be dishonest.

The General Medical Council found Andrew Wakefield UNFIT TO PRACTICE MEDICINE due to his fraudulent claims.  He was stripped of his license to practice.  It only took 20 years but it happened in 2010  and it was a glorious day for Autism Advocacy.  Why? It was acknowledged in the scientific community publicly that he intentionally produced fraudulent results.  There is actual proof of this.

Hmmm… how do I know this?  I don’t know…. maybe I have more proof such as this:  The General Medical Council Fitness to Practise Panel Hearing 28 January 2010: Andrew Jeremy Wakefield: It lays out very clearly the fraudulence and how it was determined.  It’s very, very thorough.  He is called dishonest, misleading, and irresponsible by a council of his peers.  It was found that he lied to an Ethics Committee about his findings and how he obtained them.  He even gave the few “clinical” subjects he had experimental drugs of his own that weren’t approved for trial.  The General Medical Council applies the standards of the Criminal Justice System.  That means that they rely on proof beyond a reasonable doubt.  They can not apply the standards of the Civil Justice System.  Remember…. these are medical professionals in a medical hearing poring over every single shred of Wakefield’s recorded actions, words, “studies,” and anything else he provided himself.

All of that said, I do not deny that vaccines can cause injuries.  I know it happens.  There is a VERY GOOD REASON FOR VACCINE COURT TO EXIST.  There is a VERY GOOD REASON AND RESOURCE IN THE VACCINE TABLE.  I know that vaccines can affect the nervous system.  Most sensitivity reactions and allergic reactions are temporary, thank God.  When those reactions do happen, it makes perfect sense to never give that person the same vaccine as a booster later on and question the safety of vaccines and their specific ingredients as triggers for that specific person and their family members.  My own mother can’t have the egg-based vaccines due to a serious egg allergy.   She can’t have the annual shot in the arm for influenza.  I have friends that are so immune compromised that they can’t have the vaccines at all due to the risks of their disorders.  So I weigh the risks.  I weigh statistics.

My efforts here are about debunking the harmful beliefs and harmful spreading of lies that vaccines cause Autism.  It perpetuates the idea that Autism is an injury, and therefore horrible something to discriminate against.  Let me state this clearly.  Autism is not brain damage.  AUTISM IS NOT BRAIN DAMAGE.  Ask some adult autistics and see how they feel about that.  You might be shocked at their opinion of the Vaccine Denialism movement.

I know I’ve said this before: As secure as I am in my choice to vaccinate my family as a very safe and very sound judgment call FOR US… I do have moments of doubt.  They’re fleeting and maybe once every couple of years.  Sort of like any other parenting decision my husband and I make.  It’s hard to feel like an adequate parent when you have a child with Autism.  I do often wonder if I’m the mother she needs.  But I see so much improvement in her with each passing year.  I remember the complications in my pregnancy and delivery.  I remember how my doctor was hesitant to intervene so that we could see if the delivery complications would resolve themselves.  I remember hearing she had a murmur and tiny hole in her heart that resolved itself, but we still have to check it every well child visit.  We still made sure that all of our children, even before having an autistic child, were on the delayed vaccination schedule because that’s just how we roll and we found a pediatrician who automatically followed the recommended delayed schedule.  From birth she NEVER hit any of her physical milestones and at birth (in fact in utero) showed immediate signs of Sensory Processing Disorder.  The nurses and pediatrician noticed, as did I.  But I didn’t realize what the SPD would mean.  Throughout her babyhood, she was always in the extremely late end of typical in achieving milestones.  We did have her neurologically tested but it was inconclusive.  She didn’t walk until she was a week or two away from turning 2 years old.  And yet when we had her evaluated then…. it was within normal limits.

So I guess the purpose of this post is to ACTUALLY educate people.  Fear tactics only use partial truths to try to boost their arguments, and that’s simply not right.  It’s downright dangerous.  Make decisions, even if you’re still uncomfortable vaccinating in the end, having read fact instead of fear-based propaganda.  Weigh the risks… because there ARE risks.  In other words if your instincts tell you not to do something? If your gut says, “We shouldn’t vaccinate.” then that’s splendid reason enough not to do it if you have support from your pediatrician and your own primary care physician.  You don’t need my approval.  I won’t pass judgment.  Truly I won’t.  I might judge if your decision was based on advice from Jenny McCarthy, though.  ;-)  I don’t really care one way or the other because my family IS vaccinated.   That means I’ve given my family the protection that I felt was safe.

What I care about is being truly informed and educated rather than relying on partial truths and twisting them around to fit an agenda.  But the suggestion that Autism and other neurological disorders are caused by vaccines doesn’t make sense.  There has never been evidence supporting the claim that vaccines cause Mitochondrial Disease or Autistic Disorders or Encephalopathy.  Autism is mitochondrial ie. genetic and there is more and more overwhelming proof of this coming out year after year, day after day.  It’s so easy to find.  So, so so easy.  It’s not hard to understand the information when you find it.

Relating to fear-mongeringand the dangers :

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Fibromyalgia

Fibromyalgia (Photo credit: Kindreds Page)

Did you know that Fibromyalgia is officially recognized as a disability by the Federal Government?

Think about that for a moment.  Fibromyalgia was officially recognized by the Social Security Administration as a qualifying condition for Social Security Disability Benefits in a July 25th 2012 ruling.  That means that even though there are doctors and other people in our lives that believe Fibro is all in our heads (in spite of the new overwhelming evidence that Fibro has a biological basis and is not psychosomatic) the Federal Government recognizes with adequate diagnosis and proof of diagnosis that you have a disability.  This is extremely important if and when you ever reach a point where you’re forced to stop working due to pain and/or chronic fatigue syndrome as related to Fibro.

Check this out:

SUMMARY:   In accordance with 20 CFR 402.35 (b)(1), the Commissioner of Social Security gives notice of Social Security Ruling, SSR 12-2p. This ruling provides guidance on how we develop evidence to establish that a person has a medically determinable impairment of fibromyalgia, and how we evaluate fibromyalgia in disability claims and continuing disability reviews under titles II and XVI of the Social Security Act.

Titles II and XVI: Evaluation of Fibromyalgia

Purpose: This Social Security Ruling (SSR) provides guidance on how we develop evidence to establish that a person has a medically determinable impairment (MDI) of fibromyalgia (FM), and how we evaluate FM in disability claims and continuing disability reviews under titles II and XVI of the Social Security Act (Act). [1]

Citations: Sections 216(i), 223(d), 223(f), 1614(a)(3), and 1614(a)(4) of the Act, as amended; Regulations No. 4, subpart P, sections 404.1505, 404.1508-404.1513, 404.1519a, 404.1520, 404.1520a, 404.1521, 404.1523, 404.1526, 404.1527-404.1529, 404.1545, 404.1560-404.1569a, 404.1593, 404.1594, appendix 1, and appendix 2; and Regulations No. 16, subpart I, sections 416.905, 416.906, 416.908-416.913, 416.919a, 416.920, 416.920a, 416.921, 416.923, 416.924, 416.924a, 416.926, 416.926a, 416.927-416.929, 416.945, 416.960-416.969a, 416.987, 416.993, 416.994, and 416.994a.

Introduction

FM is a complex medical condition characterized primarily by widespread pain in the joints, muscles, tendons, or nearby soft tissues that has persisted for at least 3 months. FM is a common syndrome. [2] When a person seeks disability benefits due in whole or in part to FM, we must properly consider the person’s symptoms when we decide whether the person has an MDI of FM. As with any claim for disability benefits, before we find that a person with an MDI of FM is disabled, we must ensure there is sufficient objective evidence to support a finding that the person’s impairment(s) so limits the person’s functional abilities that it precludes him or her from performing any substantial gainful activity. In this Ruling, we describe the evidence we need to establish an MDI of FM and explain how we evaluate this impairment when we determine whether the person is disabled.

Policy Interpretation

FM is an MDI when it is established by appropriate medical evidence. FM can be the basis for a finding of disability.

I. What general criteria can establish that a person has an MDI of FM?Generally, a person can establish that he or she has an MDI of FM by providing evidence from an acceptable medical source. [3] A licensed physician (a medical or osteopathic doctor) is the only acceptable medical source who can provide such evidence. We cannot rely upon the physician’s diagnosis alone. The evidence must document that the physician reviewed the person’s medical history and conducted a physical exam. We will review the physician’s treatment notes to see if they are consistent with the diagnosis of FM, determine whether the person’s symptoms have improved, worsened, or remained stable over time, and establish the physician’s assessment over time of the person’s physical strength and functional abilities.

II. What specific criteria can establish that a person has an MDI of FM?We will find that a person has an MDI of FM if the physician diagnosed FM and provides the evidence we describe in section II.A. or section II. B., and the physician’s diagnosis is not inconsistent with the other evidence in the person’s case record. These sections provide two sets of criteria for diagnosing FM, which we generally base on the 1990 American College of Rheumatology (ACR) Criteria for the Classification of Fibromyalgia [4] (the criteria in section II.A.), or the 2010 ACR Preliminary Diagnostic Criteria [5] (the criteria in section II.B.). If we cannot find that the person has an MDI of FM but there is evidence of another MDI, we will not evaluate the impairment under this Ruling. Instead, we will evaluate it under the rules that apply for that impairment.

A. The 1990 ACR Criteria for the Classification of Fibromyalgia. Based on these criteria, we may find that a person has an MDI of FM if he or she has all three of the following:

1. A history of widespread pain—that is, pain in all quadrants of the body (the right and left sides of the body, both above and below the waist) and axial skeletal pain (the cervical spine, anterior chest, thoracic spine, or low back)—that has persisted (or that persisted) for at least 3 months. The pain may fluctuate in intensity and may not always be present.

2. At least 11 positive tender points on physical examination (see diagram below). The positive tender points must be found bilaterally (on the left and right sides of the body) and both above and below the waist.

a. The 18 tender point sites are located on each side of the body at the:

  • Occiput (base of the skull);
  • Low cervical spine (back and side of the neck);
  • Trapezius muscle (shoulder);
  • Supraspinatus muscle (near the shoulder blade);
  • Second rib (top of the rib cage near the sternum or breast bone);
  • Lateral epicondyle (outer aspect of the elbow);
  • Gluteal (top of the buttock);
  • Greater trochanter (below the hip); and
  • Inner aspect of the knee.
Fibromyalgia Tender Point Sites

Fibromyalgia Tender Point Sites

b. In testing the tender-point sites, [6] the physician should perform digital palpation with an approximate force of 9 pounds (approximately the amount of pressure needed to blanch the thumbnail of the examiner). The physician considers a tender point to be positive if the person experiences any pain when applying this amount of pressure to the site.

3. Evidence that other disorders that could cause the symptoms or signs were excluded. Other physical and mental disorders may have symptoms or signs that are the same or similar to thoseresulting from FM. [7] Therefore, it is common in cases involving FM to find evidence of examinations and testing that rule out other disorders that could account for the person’s symptoms and signs. Laboratory testing may include imaging and other laboratory tests (for example, complete blood counts, erythrocyte sedimentation rate, anti-nuclear antibody, thyroid function, and rheumatoid factor).

B. The 2010 ACR Preliminary Diagnostic Criteria. Based on these criteria, we may find that a person has an MDI of FM if he or she has all three of the following criteria [8] :

1. A history of widespread pain (see section II.A.1.);

2. Repeated manifestations of six or more FM symptoms, signs, [9] or co-occurring conditions, [10] especially manifestations of fatigue, cognitive or memory problems (“fibro fog”), waking unrefreshed, [11]depression, anxiety disorder, or irritable bowel syndrome; and

3. Evidence that other disorders that could cause these repeated manifestations of symptoms, signs, or co-occurring conditions were excluded (see section II.A.3.).

III. What documentation do we need?

A. General

1. As in all claims for disability benefits, we need objective medical evidence to establish the presence of an MDI. When a person alleges FM, longitudinal records reflecting ongoing medical evaluation and treatment from acceptable medical sources are especially helpful in establishing both the existence and severity of the impairment. In cases involving FM, as in any case, we will make every reasonable effort to obtain all available, relevant evidence to ensure appropriate and thorough evaluation.

2. We will generally request evidence for the 12-month period before the date of application unless we have reason to believe that we need evidence from anearlier period, or unless the alleged onset of disability is less than 12 months before the date of application. [12] In the latter case, we may still request evidence from before the alleged onset date if we have reason to believe that it could be relevant to a finding about the existence, severity, or duration of the disorder, or to establish the onset of disability.

B. Other Sources of Evidence

1. In addition to obtaining evidence from a physician, we may request evidence from other acceptable medical sources, such as psychologists, both to determine whether the person has another MDI(s) and to evaluate the severity and functional effects of FM or any of the person’s other impairments. We also may consider evidence from medical sources who are not “acceptable medical sources” to evaluate the severity and functional effects of the impairment(s).

2. Under our regulations and SSR 06-3p, [13] information from nonmedical sources can also help us evaluate the severity and functional effects of a person’s FM. This information may help us to assess the person’s ability to function day-to-day and over time. It may also help us when we make findings about the credibility of the person’s allegations about symptoms and their effects. [14] Examples of nonmedical sources include:

a. Neighbors, friends, relatives, and clergy; and

b. Past employers, rehabilitation counselors, and teachers; and

c. Statements from SSA personnel who interviewed the person.

FOR MORE VISIT THE ARTICLE LINKED DIRECTLY BELOW

SOURCE:

Social Security Ruling, SSR 12-2p; Titles II and XVI: Evaluation of Fibromyalgia (click here) 

 

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English: Common signs and symptoms of fibromya...

English: Common signs and symptoms of fibromyalgia. References fibromyalgia-symptoms.org (Photo credit: Wikipedia)

I finally got my doctor to test my thyroid properly.  She did all six panels after the nurse practitioner explained to her why she should.  That’s a whole ‘nother post, but I’ll spare you.  I got the results and it came back as “normal.”  I also had her check for a systemic candida overgrowth, but that came back as “normal” too.  That means that neither of those things are causing any Fibromyalgia symptoms.

A full thyroid panel would be: TSH, T4, T3, Free T4 ,  Free T3, Reverse T3.

[EDITED FOR DETAIL:

The results are discouraging since they’re not what I was expecting, but I also realize that it helps narrow things down.  I’m starting to feel more and more pushed towards having to figure out if I’m sensitive to gluten or not.  A gluten sensitivity can exacerbate my Fibro symptoms, so it’s looking like it’s time to try an elimination diet regarding gluten.  I had success eliminating meat and becoming vegetarian and that that should be encouraging, right?

Here’s another interesting tidbit… I’ve always been aware of this, but a gluten sensitivity can make Autism worse or mimic symptoms of Autism.  When Gracie was very small we tried an elimination diet of gluten that didn’t seem to work but if I’m going to attempt to go gluten-free then I’m going to try to get her to go gluten-free as well.  She gets the so-called chicken skin on the backs of her arms and it bothers her a lot because she thinks it’s ugly.  Then she tries to scrape the bumps off and there’s a scab.

I brought up the idea to my daughters.  Gracie acted as if I said nothing, so there’s nothing new there.  She just wants cake.  As long as she can have cake that tastes like cake I think she’ll be fine.  Juliana thinks it means she’ll never be able to socialize at school lunch or have sandwiches that taste good ever again.  She’s also worried about pasta.  And crackers.  I’d like for her to try it willingly due to her ADHD, but she’s almost 13.  I need her cooperation.  Anna? She thinks it’s unhealthy since we have whole-wheat-everything.  I tried to explain that there are alternatives that are healthy.  I might have to get sneaky and creative.  :-)  That’s sort of the definition of cooking as a parent, though, so now I just have to learn the language of gluten ingredients in the ingredient labels and find some tasty recipes for special occasions.

I have to give it a minimum of three to six months.  Longer if possible.  I’ve read that it can take months to years to rid the body of gluten.  I don’t consume a lot of it in the first place, but that’s a little disconcerting.  I don’t know a lot about going completely gluten-free yet.  I do know that it can be very involved.  Crossing my fingers.

I’m nervous.

[EDITED:  Not gonna do it.  Gluten free just isn't really an option, at least not right now.  I don't think I buy into the whole thing for either myself or my daughter/s anyway since we don't show true symptoms of gluten intolerance or insensitivity.

And also, for what it's worth, I'm not 100% certain that my doctor was 100% truthful about the Candida results or thyroid results so when I see my rheumatologist for my first appointment at the end of September I'll be sure to ask her to go over those tests.]

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I’m so over this Fibromyalgia thing.  Can I just? You know, be over it? Be done, be completely done and never look back? I’m sick of the character building.  I’m sick of the whole systemic issues thing.  I’m sick of the whole progressive degenerative disability thing.  I’m sick of the unlikelihood of there ever being a cure thing.

I’m feeling overwhelmed.  Can you tell? Can you just?

I have periods where I feel better than others.  Where my baseline pain is my “normal.”  I may have twinges here and there of something annoying and more noticeable like a migraine or some shoulder pain or back pain, but it’s mostly manageable.

Then I have times like the past week where I have the majority of my days where all I feel like doing is breathing and sleeping.  I can still move.  I can still drive, I think, since I can type this morning.  But it was painful putting my feet on the floor just to get up to pee.  It hurt to brush Gracie’s hair to get her ready for the summer school bus.  It hurt to lift my coffee mug.  It hurts to hold my cane.

I’ll knock on wood, but I’m not too foggy right now.  My plan is to take it slowly today and not to stress out.  I have a lot to do having taken work off last week.  It was a good thing I did, since it was the girls’ first week of summer vacation but it was also a very painful week.

Oh, I would love to put this thing on the shelf.  Wrap it up in a box, put a purple bow on it, and put it on the furthest section in the back of the closet shelf.

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FIBROMYALGIA

FIBROMYALGIA (Photo credit: *SHESHELL*)

This could be really good, really big news for those of us who have Fibromyalgia.  If there’s a known source and cause, then that means there’s a higher chance of finding a cure… and finding it faster.  Or at least drastically reducing the pain.

Rational Biological Source Of Pain Found In The Skin Of Patients With Fibromyalgia (click here).

There’s also this article: 10 Causes Of Fibromyalgia Your Doctor Doesn’t Know About (click here).

I hesitated to share these articles, though, because nothing in them can really be certain.  Fibromyalgia is different for everyone that has it.  The types of pain are different.  The cycles are different.  What triggered the onset of the Fibromyalgia is different.  The progression of the disease is different.  Exacerbating factors are different.

There’s also the fact that while I’ve only had the diagnosis for a couple of years, I see the history that others I share the diagnosis with have gone through.  There have been supposed breakthroughs before.  Hopes are raised and then dashed.  What works for some doesn’t work for most.  I’ve experienced this with Cymbalta.  It works great with anxiety, to a point, but doesn’t do a single thing for the pain.  That has my shrink baffled, but I’m not surprised since she comes from the stance that chronic pain due to Fibromyalgia is actually psychosomatic and caused by stress, depression, and anxiety.  I do have those things, but they’re not causing my pain.  Not when those factors are under control.  And not when the pain is what makes my depression and anxiety worse rather than the other way around.

Anyway.

My real purpose was to get these articles up and shared.  I have some other issues I’d like to discuss but I’m feeling foggy and jumbled.

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My eldest daughter just asked me if being vegetarian was easy.  I had to be honest with her.

“Most of the time it’s easy, unless bacon is involved.”

I haven’t found a way to keep bacon in the house and prepare it for others without wanting to eat the whole pound.  As a vegetarian I would still eat bacon wrapped bacon, and then as someone with Fibromyalgia I would regret it for the next couple of days with some pain issues.  Even as I regretted it, I would consider it worth it because it was bacon.

Otherwise I don’t miss meat.  I miss some of the seasonings used.  For instance, if I’m craving buffalo wings I realize that it’s not the meat I’m craving but the buffalo sauce and dipping it in ranch or bleu cheese dressing.  I found a fix for that.  I put hot sauce on my pizza.  I also do something after that, which I used to think was gross when I heard people talk about it:  I take the hot sauce pizza and dip THAT into ranch or bleu cheese dressing.  It’s perfect.  Not vegan, but I’m not vegan.  :-)

I also enjoy seasoning my tofu with hot sauce and chili pepper, much like a taco, and while it will never taste like taco filling and will never be the same texture as any sort of recognized taco filling, I get the seasonings I love and top the tofu onto rice and black beans.  Sometimes the tofu has curry, sometimes Lawry’s salt.  Sometimes I put it in a chef salad with avocado in place of BBQ chicken.  It’s EVEN BETTER than BBQ chicken that way.

The hard part is if/when we go out to eat at a restaurant although most seem to be catering more to vegetarians these days.  It’s harder when you’re a guest in someone’s home and nearly everything they’re serving is meat or was cooked steeping in meat.  Making adjustments and accommodations is necessary, but it’s hard to compromise when it’s for health issues.  That’s what I’m slowly coming to terms with.  The rare cheat just might not be worth it.

So yeah, vegetarianism is easy when I consider the alternative.

Except when I’m confronted with bacon.

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Fibromyalgia Awareness

Fibromyalgia Awareness (Photo credit: Kindreds Page)

New England winters are not for Fibromyalgia sufferers.  I don’t know whether to count this flare up as a new one, or a continuation of what I’ve been feeling for the past month. I get several days in a row of some of the worst pain in various areas of my body on top of my baseline pain, and then a day of relief with nothing but baseline pain.  Then I get up, it hurts to roll over in bed to get out of it, and I feel shock waves of pain as my feet touch the floor.  Reaching to remove the blankets sends rockets of pain through my back and shoulders.  I hobble to the bathroom.  It hurts to get in and out of the shower.  I feel grateful that when we moved in, the previous owners had already altered the tub so that it has handle bars inside on the walls.

As I wash and rinse my hair, I realize that I have a brand new clump of loose hair.  Not the regular that you lose while washing or brushing your hair… but twice or triple that amount.  Even though it happened several days ago instead of like a normal person with a normal amount, monthly.  I try to wash my calves, but it hurts.  I nearly trip getting out of the tub because I realize I can’t lift my legs up high enough.

Advil isn’t working.  Hydrating isn’t working.  Cymbalta isn’t working.  Positive thinking isn’t working.  Cussing isn’t working either.

The biggest insult isn’t the difficulty losing weight.  It’s not even having to use the cane and by the end of a day, hunching over from exhaustion and pain.  It’s when you have clusters of flare-ups and, as a woman, the hair loss is noticeable.  It’s when, as a mother, it hurts to hug your children because your skin is so hyper-sensitive.  It’s when, as a wife, you’re afraid that your husband thinks you’re using your pain as an excuse not to participate in certain aspects of the relationship and chores.  It’s when in spite of living a healthy lifestyle and eating well, you see positive results and think you have it mastered but then the hammer comes down and you get a solid month of, “Yeah, right.”

It’s when you wander in the fogginess at unexpected times, and it makes your usual sharpness and intellect seem dull and fleeting.  Stuttering, flaky moments, long pauses trying to find the right words… things that used to be blamed on Mommy Brain but are too far away from the newborn and toddler days to be Mommy Brain any longer.

The entire disorder is an insult.

I can’t afford to sleep all day.  I can’t afford to eat Advil nonstop.  I can’t afford to push my children and husband away.  I can’t afford to cry and use up all of my tears.  I can’t afford to use up all of the hot water to try to soothe the aching muscles and nerves.

I want a hot tub.

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Manage My Pain Lite app

I have an app on my phone that helps track my fibromyalgia symptoms.  I added it last week.  It’s called Manage My Pain.  I got the Lite version, which is free, but still very detailed.  It has things in it that I didn’t think of or forgot were related to fibromyalgia.  It’s a great app.  I just have to consistently remember to enter my symptoms as I have them.  I found the app on Google Play. [edit: I forgot to mention that if a symptom isn't already suggested in the app, you can add it in to the list yourself. It's very easy to add things into the app as needed.]

Speaking of symptoms, the fatigue has been hitting me like a Mack truck.  I feel it hit me at 2:30 and if I don’t lay down to nap, I find my eyes burning and nodding off.  It’s a good thing I’m waiting for the paperwork right now to go through in order to go back to my new job.  It’s been going on daily since Friday or Saturday.  When I get the nap, you would think I wouldn’t sleep through the night but I’m still sleeping very solidly through the night.

Chronic Fatigue … I wish I could shake it.  It shakes off briefly when I do an activity, but it reaches a point when I can’t ignore it and the distraction of the activity, the momentum of the activity simply doesn’t work.  Everything becomes too heavy, tired, slow, aching, and so necessary to simply sleep.  CFS.  It’s hard to explain to people that it’s not laziness.

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