Posts Tagged ‘Health’


English: The location of the nine paired tende...

English: The location of the nine paired tender points that comprise the 1990 American College of Rheumatology criteria for fibromyalgia. (Photo credit: Wikipedia)

I had my first rheumatology appointment.  It was the intake, so it lasted about two hours.  I went in prepared with a printout of every symptom that I have frequently and my history over the years that may have contributed or could have been early signs of Fibromyalgia (or something else).  I went in with an open mind that I was wrong about the Fibromyalgia thing.  Even so, I started to feel panicky when she started to make comments that she didn’t seem to think that’s what I have because it took me so damned long to even get into a rheumatologist and if it’s not what I think it is then who’s going to treat me?

Then she tested the trigger points.  With everything I know about Fibromyalgia (including the damn trigger points) I didn’t even realize that’s what she was about to test.  I thought she was going to test my spine for MS first since we had just finished talking about.  Suddenly I felt like I was exploding from the inside, and everything was about to fall off of me.  I nearly jumped out of my skin and wished I could leave my body.  I admit it… I cried.  I couldn’t catch my breath from the pain.  I’m in tears right now recounting this to you.  It’s a little more than 12 hours later and the trigger points still hurt.  The doctor seemed surprised that when she just (apparently) gently pressed my trigger points I had such a strong reaction.  It was a similar automatic reaction as when you have your reflexes tested with that little rubber hammer when they hit your reflex point at your knee.  Except for the fact that it’s a combination of pain, intense shakiness from within and without, breathtaking, shocking to the entire system with each trigger point, a bruised feeling in a center point that radiates outward to everywhere, the most intense centralized nerve-like pain… I could go on but I honestly am not sure I can adequately describe what it’s like to someone who wouldn’t feel anything at all when their trigger points are pressed.  The intensity is just… there’s an emotional response to go with the physical.  It’s incredibly scary even once you realize what’s going on.  I’ve had it done once before to diagnose the Fibromyalgia and I knew nothing at all about the disease back then, knew nothing about trigger points or what the doctor was doing or why.  I only knew it left me limp and crying.

I was still limp and crying yesterday but at least this time I knew why.  I pray to God and all the Saints that my daughters never, ever have to go through this if only so that they never, ever have to have their trigger points tested even once.  Sorry, I got a little off track.  So the doctor was a little surprised because I think she had decided that I had something else.  She said,

“Oh! It appears you have ‘some Fibromyalgia!’ Do you know what that is? What that entails? You said there are family members with it but are you educated at all about it?”

LOL LOL LOL again.

She asked me this while I was still crying, and in the physical and emotional mess I was already in I just cried harder.  I couldn’t even nod my head.  She put her arm around me and had me lay back on the exam recliner (not a table because let’s face it, people with connective tissue disorders have a hard time laying down all the way on exam tables).  She gave me some time to catch my breath and calm down.

And then she proceeds to tell me what she thinks she knows about Fibromyalgia and how we’ll go about treatment.  Which is that she can diagnose it, but she doesn’t prescribe medications for it.  She can prescribe therapies and she did… hydro-therapy, so yay for that… and she can recommend to either my neurologist or psychiatrist medications that she thinks would help because,

“It’s a neurological disorder brought on by lack of sleep.”

O’rly? is what I think my exact response was.  Of course it must have been paired with an incredulous facial expression because she repeated what she said with a little bit of defensiveness in her voice and expanded a little bit like she was talking to a child.  Given all I know about Fibromyalgia, that was NOT what I was expecting to hear from a top-rated Rheumatologist.  It felt like the appointment came to a screeching halt.  I was so shocked that I had trouble forming a sentence to tell her what I knew.  I see in a month or so, which means I’ll be printing out a metric shit-ton of articles that I’ve shared here proving it’s not just neurological and not “brought on by lack of sleep” but that there’s actually an issue with the nerves.  That it’s biologically based.  That it can’t be remedied with sleep.  I’ve tried.  Chronic Fatigue Syndrome is part of the disorder.  It doesn’t mean I’m not getting enough sleep.  It means that no matter how much sleep I get my body doesn’t recognize it as “enough.”  There will never be enough recuperative sleep or rather… I will always go through phases where my body doesn’t recognize that I’m actually getting enough sleep.

But then this is part of why I’ve blogged about the fact that I don’t think a Rheumatologist is THE Doctor to treat Fibromyalgia.  We need a Fibromyalgist.  Not treatment between several different doctors… a doctor who specializes mainly/only in Fibromyalgia and related/similar disorders.  It’s my own fault for going into this with really high expectations and hopes.  Fibromyalgia may be one of the disorders that this office can diagnose and treat, and call it one of their specialties, but it just means that they’re qualified to diagnose it.  Anyway, there’s more.

She said that we do still need to figure out if there are any additional diagnoses on top of the Fibromyalgia, and she strongly suspects that there may be.  I have to get an X-Ray for something I forgot why because I haven’t had enough coffee this morning.  I have to get some comprehensive blood tests for vitamin levels and various diseases and disorders.  She’s very bothered by the fact that with all of the easily-broken bones and sprains I’ve had since childhood, not one single person or doctor thought to run tests or figure out WHY these things were happening.  She’s very bothered by the fact that no one ever picked up on all of the various infections and illnesses I’ve had being abnormal and WHY didn’t they encourage me to figure out why they were happening and insist on running tests.  I told her that I’ve actually asked the same questions, I’ve asked my doctors and even begged to the point of ordering my doctors to run certain tests that I hoped would give answers.  She’s bothered that not one single doctor except my now defunct gastroenterologist took some initiative in helping me figure things out and pointing me in the right direction.

This doctor is going to help figure out what diagnoses I may have in addition to Fibromyalgia and/or rule out everything else.  And she said that that’s basically all she can do.  She’s a diagnostician.

So I’m really left with a neurologist who doesn’t feel comfortable prescribing Fibro-related meds because it’s “not her specialty” and a reticent-to-believe-in-Fibro-as-biologically-based psychiatrist to take her recommendations and/or be willing to try various Fibro meds until we hit one that works.

Mixed bag right there.  I’m still a bit of a wreck physically and emotionally, so I’m not really sure how I’m going to feel about the appointment itself for a while.  I do know I was excited as soon as she prescribed the hydro-therapy with a real, um, what’s the word? Not just therapist… damn.  Word recall.  Help.  Eep, it’s past time to get ready for work, but I’ll be thinking on this and probably add a new post for anything I haven’t thought of right now.  Coffee may help with that process.  🙂

But blessed Baby Jesus… I pray that no one ever, ever, ever tests my trigger points ever, ever, ever again.  That sucked donkey balls more than I can ever express.

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Severe Autism to the merest touch of Autism ie. Broad Autism Phenotype

Severe Autism to the merest touch of Autism ie. Broad Autism Phenotype

I’ve never kept it a secret from my daughter that she has Autism.  When she cried because “her brain doesn’t work the way she wants it to” sometimes; when she started to notice that some things are easier for her sisters and cousins and friends than for her; when she started to notice that her little sister was taking on a care-taking role with her very early on and was reaching many milestones at the same time or earlier; when she noticed that not all of the children in her classes required pull out time or a paraprofessional (she prefers the term teacher’s aid)… I didn’t hide the reason why.  Even from a young age she was begging me for answers; even when she had trouble formulating sentences, she needed to know why.

I have always presented it in a very positive way for her in spite of her difficulties.  I have explained why there are certain foods she shouldn’t have (it’s easier for her to think and concentrate and makes her feelings feel better).  I have explained that her Autism helps her think differently and creatively, and that there are very wonderful ways of thinking and very wonderful ideas that she has that I never would have imagined because my brain is “only typical” compared to hers.  I let her watch the movie Temple Grandin.  She connected with it.

We have more good days than bad, lately, but I think it’s because I don’t hyperfocus on what she can’t do anymore.  I fully accept her Autism, which means I accept HER.  She used to tell me that she hated her brain and her Autism and wanted to be just like her sisters and friends but now? She wants to be herself.  I saw her the night before school at the school picnic and a gaggle of her classmates came in.  This huge group of 5th grade girls saw Gracie and they all squealed, “GRACIE! YOU’RE HERE!”  She smiled and waved and said hi to them in her sweet, gentle way and I couldn’t help but get teary eyed.  The girls surrounded her and they all took turns asking her permission for a hug, telling her they missed her.  She actually gave them all permission for hugs.  She was in her glory.

Oh fluff, I’m crying right now retelling that story.

Don’t get wrong here.  We have some really bad moments.  Thankfully some of the “bad” times are just momentary and I’m thankful.  She’s having an easier time lately getting herself under control.  I think it scares her when she can’t control it.  We have bad half days.  We have bad days.  Weeks.  Months.  But my darling girl… she accepts herself and knowing what’s going on in her own brain helps her self-correct.  She knows to accept help when I offer… and I know to back off if she refuses.  She has learned to figure out her own warning signs and ask for help in holding them off.  She asks to help satisfy her sensory diet.  I was never sure she would get to that point.

She is accepting of herself, and realizes that her Autism is part of what makes her such a special young lady.  Being autistic is just like saying her hair is blonde, her eyes are blue, she loves strawberries, and she’s lactose intolerant.  If only others were so accepting and unafraid.  When the majority of autistics are not severe, when the spectrum is so wide that the majority isn’t even noticeable enough to require diagnosis, I wonder why so many are fearful and hateful and choose to remain uneducated.

I see her and other children she’s grown up around in school that have Autism and I see little people.  Future artists and engineers and technicians and actors.  I see the gift that they are.  I don’t see brain injuries  nor a disease because they’re not injured or diseased.  They are gifts.  They are treasures.  They have a disorder because they think differently in a world where most people don’t think the same way they do.  Oh well.  We can’t make the world change for them, but we can’t expect them to change for the world either.  Instead, I choose to prepare my daughter to cope with that world without having to change who she is.

It took me a long, long time to view my daughter’s Classic Autism, high functioning as it may be for her (and let’s face it, our family unit), as a gift.  It was difficult to see an end to the days that were endless struggles over everything.  I mean… everything.  When she didn’t know what was wrong and I didn’t know how to fix it.  Then I stopped looking for “why” it happened and I stopped asking God.  His answer to me was, “Why not.”  I had to be the mother she needs, and not the mother I wanted to be.   I’m a control freak and I had to let go.  I had to accept that things can be untidy and still turn out all right.  I had to trust in “not knowing” and even though I still worry and control what I can, it’s getting a little easier to let go.

Let go and let God.  But also, let Gracie.

And then today, I stumbled on this and it made me cry.  A young woman attending college and happens to have Autism.

My name is Shaina Barnett. I am 22 years old and a student at a community college in my area with high-functioning autism. I was diagnosed when I was only a toddler, in 1994. The funny thing was, I wasn’t truly aware of being different until I started asking myself why I could not somehow click into the crowd of kids in my classes. I was about 8 years old or so when my mother gave me the talk of autism. She said it was a gift I was given from God and with it, if used correctly, I can do wonders, move mountains, maybe even change the world. Of course, at the time I did not believe her. I just wanted to be able to play with the other children and share their experiences without being ridiculed or told of my faults. Middle school was such a nightmare. Other students knew I was different, but they used it as a weapon to break me. They pulled cruel pranks on me and called me hurtful names. Being a teenager at the time is hard enough, even without having autism. My safe haven was drawing comics, writing stories and poetry, and singing. Years went by and I felt I began to grow and blossom into a young lady. But I could not have done it without my high school mentor who was also my beloved homeroom teacher. We still remain very close. Being in and out of social skills programs gave me tools to be able to talk among my peers, however, I advanced past the expected curriculum. When I attended a Jewish summer camp, it greatly build my self-esteem and helped me grow to be the adult I am. I’m proud to have such positive experiences. I thank my superhero of a mom for being my support and my rock. She was right all along. I don’t think of my autism as a curse; if anything, it is my superpower, a power that not even DC Comics or Stan Lee could come up with. I have been BLESSED.

Shaina Barnett
Van Nuys, CA

SOURCE:  Autism: The Unexpected Journey (click here)

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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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espresso-spoonsAfter three years, a rheumatologist has finally accepted my referral.  I can’t even express how this makes me feel.  There’s such a sense of relief.  I don’t think I’ve ever been so excited about a doctor’s appointment except when it was to confirm a pregnancy and see sonogram pictures during my pregnancies.  I’ve had several referrals sent to different rheumatologists but they either weren’t accepting patients or I somehow didn’t have enough Fibromyalgia for them.  

 

I called the doctor’s office and asked if they were taking patients.  The receptionist was actually kind to me, and said,

 

Yes, both of our doctors are taking new patients.  Whichever doctor you choose might depend on your schedule since Dr. C is here from 7:30 to 3:30 and Dr.  H is here from 9:00 to 5:30.  I should tell you that this office does require a referral, though.”

 

Yes, of course they do.

 

I mentioned my previous issues regarding the referral process and my diagnosis.  I mentioned how the doctor that made the diagnosis went about making it, and she said that sounded correct.  Then I mentioned how he refuses to release the records where he made the diagnosis even though it’s in my file because he’s claiming it’s in his “personal notes.”  That he even refused to release the records to the State when they requested the entire file.

 

She said that would present a problem in not having a diagnosis to transfer over with the referral from my PCP, but there was another option.  They were willing to take me on with the referral as if Fibromyalgia is merely suspected and I’m going to see them in order for them to diagnose me with Fibromyalgia and follow up with treatment.  She said a single referral from my PCP would be enough, but luckily another doctor said they would also send my file.  But then she said that the wait list would be three months long and they wouldn’t be able to see me at the earliest until November, and that was assuming that my doctor got the referral in to them right away.

 

Less than a week later this very kind woman called me and told me that the referral had come through, they accept my insurance, and guess what else? Someone cancelled an appointment and they have an opening for mid-September.

 

This felt entirely too easy.  I’m not looking any gift horse in the mouth here.  I’m thanking God every minute of every day.  I can’t wait for this appointment.  I’m  so relieved.  I’m anxious, but in a good way.  I have something to look forward to and plan for where I can put together a list of my most common symptoms and history, and know that someone is going to listen to me.  Like… really listen.  Because this office includes Fibromyalgia in their list of specialties.  This office, both doctors, have excellent (above average) ratings on all of the rating sites I’ve managed to find.  They’re very, very local to my job.  It should take less then five minutes to get there from work so that I can walk if I had to.

 

I’m so grateful that I might bring Dr. H a spoon.

 

 

 

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Clash of the Titans (2010 film)… like, never dude.  I haven’t cried from pain in a while but today did me in.  Something felt like it wanted to rip a muscle right out of my neck.  It was downright scary.  It ended up easing up after several minutes.  I don’t even know how long it lasted.  Thank God my husband was here.  If it didn’t stop being as excruciatingly sharp and painful when it did I was going to beg to go to the ER.

When it did let up I couldn’t hold my head up.  I held up my arm and the pain went down as far as my elbow.  It felt like I had been lifting weights.  I’m still sore as if I pulled a muscle, and there’s a headache now that won’t go away.  I’m not sure if it’s from the neck … um … issue? or the weird almost-thunderstorm that passed by.

I do have to say that Sam Worthington is making my day much more bearable.  Clash of the Titans is on TNT.  Oh shush.  I love him.  He’s my boyfriend.   And if Perseus really existed he would rip that pain right out of me just like he ripped off the head of Medusa.  Okay, maybe he sliced it off.  And I know it wasn’t like a precision cut or anything but in any case he would make things better.  All that demigodliness.   I

Also, maybe it’s just that I feel like giving up today but I really want some crab Rangoon.  Delicious fried Chinese take-out goodness with that uber-unhealthy red sauce.  And some real bacon.  That’s what I want.  If I’m going to be in pain anyway then why can’t I eat like shit? Give up the vegetarianism and healthy food? Which brings me to something else.  After fasting I had my blood test.  I mentioned that before.  What I didn’t mention is that my cholesterol was STILL too high.  In the upper end of normal, but away from being in the danger zone by only 1 point.  My good cholesterols were too low.  My blood sugar was too high too.  I’m a tad frustrated.

Perseus would know what to do.  Plus he would go and get me some Chinese take-out, bacon from IHoP, and he’d also anticipate my desire for Ben & Jerry’s Late Night Snack ice cream.  He would buy me three containers of the B&J’s ice cream so that we could share one tonight, and then I’d still have some for later in the week.  He would also think ahead and put the kids to bed for me so that I wouldn’t have to share with them.  Because he’s a hero.  While I’m at it, he could talk to his father Zeus and see about making this shiznit Fibro go away.  Poof.

And then I would let him play on the PS2 with Manny.

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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  Fog - Cognitive Dysfunction Image Source: "Fibro Affirmations" support page on Facebook

Fibromyalgia Fog – Cognitive Dysfunction
Image Source: “Fibro Affirmations” support page on Facebook

It’s hard to explain Fibro Fog to someone who has never experienced it, or to someone who has never seen it in action.  My office mate at work has seen Fibro Fog do its dirty work on me, and she described it once as if my brain got stuck like a needle on a record.

Repeatedly.

When it happens to me it feels like everything slows down.  I’m painfully aware that my word recall is stuck.  I’m painfully aware that:

  • I’m pausing for too long
  • that I’m stammering and it’s annoying to others
  • that I’m speaking too slowly in order to use the correct wording and
  • so that I don’t stammer
  • that my brain to mouth filter sometimes doesn’t kick in
  • that I sometimes forget what I’m saying in the middle of saying it
  • that I often transpose words and phrases when I speak them or write them
  • that sometimes I have to read and reread something for it to look like English
  • that sometimes I have to ask people to repeat what they’ve just said because although I heard it and recognized it as English, and know that what they said was likely very simple, I didn’t understand a word they said.  And I blame it on not hearing well.
  • that I have to write down everything in order to remember it; that math intimidates me and when math is involved it takes me much, much longer to complete a task.
  • that I sometimes feel like I have ADD, but I know it’s not.
  • that all of these things make me feel anxious, because I feel like I’m missing something important and it’s going to be harmful to someone at work or my children or my husband if I don’t remember what it is.
  • that my coordination plummets, and I can’t do simple things like put a key in a keyhole and my balance (which is already shaky) also plummets.

Luckily, this is not every day.  It happens during migraines.  It happens during very bad pain flare-ups.  It happens during extended pain flare-ups.  Sometimes it does “just happen” although admittedly, if I sit down and think about it, I can usually trace it back to sleepless nights I had due to severe pain during the night.

It’s not just at work when these things happen.  Like sitting with a consumer and trying to listen to an issue they have, and then trying to help them come up with a solution to something and I’m trying to explain my suggestions.  Or I’m going over steps in the process of how we’ll be reaching goals.

It happens at home.  I could be cooking and step away from stove for a moment because what’s cooking can wait for a few minutes.  Except I need to set the timer if it’s not something that can burn or even cook off like a pot of boiling water.  Yes, I can burn boiling water.  It’s not a joke.

When I’m driving, I sometimes forget to take turns even if it’s a place I go to all the time.  I go to the grocery store 3.5 miles away.  I once forgot how to get there at all.  My dentist is even closer than that, and I’ve forgotten how to get there numerous times.  Even though I’ve been going to the same OB/GYN for 20 YEARS I’ve been needing to use my GPS to find her office.   I forget important items on a grocery list or when running a specific errand … even when it’s written at the top of the list.  And it’s the main reason for the trip in the first place.

What helps me? Sometimes…

  • Giving in to a nap.  Attempting to get more sleep.  Except that doesn’t always help because honestly, the reason I’m in the fog to begin with is a particularly bad flare-up which means sleep will be fitful.
  • Heat therapy.  A hot shower is relaxing, and can help with sleep and anxiety.
  • Yoga.  The stretching helps blood flow, and it temporarily helps my mobility.  It also helps get the blood to my brain.
  • Simple sugars from fruit and veggies.  I try to cut down on refined sugars.
  • Walking.  Movement even when I don’t feel like it.  Getting my heart rate up.   It’s easiest to exercise if I can go swimming.  Feeling the water take the pressure off of my joints helps immensely.  It helps relieve pain in a way other things can’t.  Of course, after getting out of the water there’s a heaviness that you feel that’s just… well, it feels like you’re being pulled into the ground.
  • Getting fresh air.  Communing with nature.  Stopping to smell the flowers, as long as I don’t have to bend down.  Because that hurts.  But there’s something to be said for “clearing your head” with some fresh air.
  • Prayer.  Prayer is like meditation, and helps me focus.  I do a daily Bible devotional as often as possible… which means “when I remember.”
  • Get as many fatty acids, amino acids, and antioxidants from natural food sources as much as possible.  I Spicalso take some supplements.
  • Spices and teas.  I find them comforting as well as therapeutic.
  • Having gone vegetarian.  Well, pescatarian.  It’s been nearly a year.  I have trouble digesting meat, and I feel full body pain when I do fall off the meat wagon.
  • Staying hydrated.  Dehydration can lead to a myriad of problems for anyone, and the problems are magnified for the 30+% of Fibro sufferers that get Fibro Fog.

And sometimes nothing helps at all.  I can do everything “right” and still get caught in the fog.  It’s like it’s night time, it’s pea soup fog, and I have my high beams on.   But you know, as I was researching some helpful articles to add to this post I stumbled upon an article that included a link to Fibromyalgia & Fatigue Centers.  I actually found one a couple of towns over from me.  I may just have to give them a call, especially since the rheumatology offices around here won’t even call me back to tell me if they’ll take my referrals from my doctor and if they do, they’re not taking new patients.  Or they don’t specialize in Fibro.

Cross your fingers and toes, and if you’re the praying type…

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