My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling With Psychotic Features ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Daily Headache ~ High Cholesterol

Tuesday, June 14, 2011

Fun post!

I got this list from Cover(ed) Girl's blog.

If I were a month, I'd be June
If I were a day of the week, I'd be Saturday

June has lots of Saturdays in it, plus my 30th birthday was on June 12th!

If I were a time of day, I'd be midnight
If I were a planet, I'd be Earth (I'm kinda partial to it)

Mother Earth

If I were an animal, I'd be a inside dog
If I were a direction, I'd be east.

Happy puppy dog!

If I were a piece of furniture, I'd be a huge, comfy recliner
If I were a liquid, I'd be water

Water, an essential ingredient to life on Earth

If I were a gemstone, I'd be mmm...I don't know? I guess my birthstone, whatever that is...
If I were a tree, I'd be a tulip tree

I grew up with a tulip tree in our backyard. They're awesome!

If I were a tool, I'd be a pair of digital calipers
If I were a flower, I'd be a sunflower

When I worked at Briggs & Stratton I never got to use the digital ones!

If I were a kind of weather, I'd be a warm spring day with a cool breeze
If I were a musical instrument, I'd be a makeshift drum

The kinda makeshift drums that really matter ;-)

If I were a color, I'd be pink 
If I were an emotion, I'd be childlike excitement

I'd love to be a pink fairy and play dress up!

If I were a fruit, I'd be a kiwi
If I were a sound, I'd be the sound of the word "love" on my DH's lips

Kiwis..not the kind from New Zealand
If I were an element, I'd be fire
If I were a car, I'd be a Barbie car ;-)

I have respect for fire!

If I were a food, I'd be a brownie
If I were a place, I'd be part of the woods

I grew up in the woods, I miss it so bad :-(

If I were a taste, I'd be pizza sauce
If I were a scent, I'd smell like laundry dried on a clothes line

I miss drying my clothes on a clothes line. They don't shrink, they dry crisp, and they smell so good...

If I were an item of clothing, I'd be my favorite gray sweatshirt
If I were a body part, I'd be a foot
If I were a facial expression, I'd be a smile

A smile and my favorite gray sweatshirt! :-D

If I were a pair of shoes, I'd be kick ass wooden platform shoes (the platform is wooden, not the shoe part)
If I were a song, I'd be "Starry, Starry Night" by Don McLean

Get a playlist! Standalone player Get Ringtones

What would you be?

Friday, June 3, 2011

Quack doctors, gardening, my thyroid, and fatigue

Today was my Cardiologist's appointment at University Hospital.  About 45 minutes before we left DH started having a seizure.  Over the next fifteen minutes he had two more seizures, and I called and cancelled.  He feels really guilty because he feels like it's his fault we didn't go.  I tried to tell him it wasn't his fault, but I'm not sure if he believes it.  You don't schedule seizures, they don't happen on your time, and they often happen have really bad timing.  I haven't had a seizure in about a month so I'm doing great there.

DH has a bad sinus infection that I think is causing his increase in seizures.  He once had a cat-scan to find why his seizures had increased and the neurologist had discovered infection in his brain.  It had started with his sinus infection getting worse and worse and then the infection just spread.  One fourth of his brain was completely whited out on cat-scan because it was full of infection.  That's not something to mess around with, but who does he see to get rid of his sinus infection?  There is only one clinic in town that accepts Medicaid and they make it a point to treat people like shit because it is the "poor people's" clinic.  I mean why should us poor people need people to treat us decently anyway?  Besides that, they honestly don't know anything.  I knew more after taking all the science classes in high school than the doctors, nurses, and PAs know at this place.  He's allergic to penicillin, too, and I don't trust this clinic to not give him some.  So where does he go to get it taken care of?  That's the reason he still has the infection.  If a doctor would just accept Medicaid patients then he could be seen and get well.  Right now we don't know what to do.

I'm sorry I've been absent from my blogging a lot lately.  I've been writing a lot of pen pal letters, the only ones I have left to write are Kelly in Belgium, Francesca in Italy, Júlia in Brazil, and Jamie in Arizona.  Today I've taken a brake from writing.

I have been doing a little gardening in my container garden.  I'm growing five types flowers, morning glories,  tomatoes, and we bought some peppers to plant.  Oh, and we bought cucumbers to plant, too!

I have found a swelling in my neck that feels hard when you touch it.  It's where my thyroid is, judging by the pictures I looked up and thinking back to where they ultrasound my neck.  I don't see my endocrinologist again until August.  I already had swelling on the right side of my thyroid, two or three nodules on it, and one nodule on my parathyroid.  He said it is unusual to have nodules on both the thyroid and parathyroid, but I am the woman who wrote the book on unusual! I also want to ask him about a lump I have behind my ear.  It has been there at least five years, probably longer, and it feels a little bigger than it was.  I asked a doctor once at the clinic I mentioned earlier about it once and without looking at it he said not to worry it would go away soon and did this patronizing little laugh.  Ummm...hello?  It's been there for years, now it's going to disappear at the command of some quack doctor?  Asshole.  He could have at least looked at it.

I've been so incredibly tired all day.  I slept the majority of the day and I'll have no problem sleeping tonight.  I don't know what the deal is.  I guess it's just the EDS and fibro fatigue.  That right there is enough to knock anyone over!  Well, speaking of being tired...I hope you all have a great night...or if you are reading this during the day...have a great day!

Wednesday, June 1, 2011

May is Ehlers-Danlos Syndrome (EDS) Awareness Month

What is EDS?

Ehlers-Danlos Syndrome, or EDS, is a group of inherited disorders that cause the body to make faulty collagen. Depending on the type of EDS, different organs are affected.  For instance, in the hypermobility type, the most common type, pain and joint dislocations are among the top complaints.  Classical type of EDS has more skin and organ involvement as well as pain and joint hypermobility.  The Vascular type of EDS has a lot of organ involvement,  pain, and hypermobility may be limited to small joints or it may appear in large joints as well.

A few questions I've heard asked are:

Q:  Does it hurt to stretch like that?
A:  It may not when an EDSer is young, but every time we hyperextend our joints (extend our joints beyond the normal movement) we do damage.  The older we get the more it starts hurting.

Q:  Can you show me?
A:  I have pictures up on the H-EDS page of myself.  Like I've said before, I shouldn't be stretching like that.  I got a 7/9 on the Beighton Scale.  The Beighton Scale is described at the end of this page.  I've made plenty of YouTube videos about EDS, but they are educational videos or vlogs, so don't expect an Elasti-Girl video from me. :-)

Q:  Do people with chronic pain just have a low tolerance for pain?
A:  I can't answer for everyone, but my tolerance for pain is very high.  I can walk around on a dislocated toe and not realize it sometimes.  I've burnt myself, I've ripped my skin, and I've messed up joints without knowing it because my pain levels are so high.  Most EDSers have a very high tolerance for pain because we are in pain all the time.  I personally think that if a normal person were suddenly put into the shoes of an EDSer in extreme pain their brain would literally explode.  (Okay, so that last sentence wasn't scientific.  There wouldn't be any exploding brains.)

Q:  Is EDS real?
A:  Yes!  They have genetic tests available for most types of EDS.

Q:  Is EDS just being stretchy and dislocating joints?
A:  EDS is way more than that.  EDS can affect many or all systems in your body, regardless of your type.  Also, a lot of people are cross-typed, meaning that they genetically have more than one type of EDS.

Q:  Can you catch EDS?
A:  No, it is only passed down genetically.  It can also start with someone (as it did me) whose genes messed up all on their own when they were growing from embryo to baby.

Q:  What does it feel like to subluxate or dislocate a joint?
A:  Painful.  Weird.  Scary.  It gives me a feeling of helplessness, but each person is different.  It is even weirder to put them back in.  I usually have DH help me get my joints back in.

Q:  Is EDS very common?
A:  EDS is listed as a rare disease by NORD (National Organization for Rare Disorders).  According to the Genetics Home Reference Guide to Ehlers-Danlos, EDS affects approximately 1 in 5,000 people worldwide.

Q:  What do EDSers call themselves zebras?
A:  In medical school, students are taught "When you hear hoof beats think, horses, not zebras."  Since EDS is a rare disease, we need doctors to think of zebras when they hear hoof beats.

Q:  I've seen references online to being a "spoonie."  What is a spoonie?
A:  My own words cannot do the Spoon Theory justice.


This information is from Mayo Clinic's article on Ehlers-Danlos Syndrome.

Classical type (formerly types I and II) EDS  This type affects about 1 in 10,000 to 20,000 people. Signs and symptoms include:
  • Loose joints
  • Highly elastic, velvety skin
  • Fragile skin that bruises or tears easily
  • Redundant skin folds, such as on the eyelids
  • Slow and poor wound healing leading to wide scarring
  • Noncancerous fibrous growths on pressure areas, such as elbows and knees; fatty growths on the shins and forearms
  • Muscle fatigue and pain
  • Heart valve problems (mitral valve prolapse and aortic root dilation)
Hypermobility type (formerly type III) EDS  This type affects approximately 1 in 10,000 to 15,000 people. Signs and symptoms include:
  • Loose, unstable joints with many dislocations
  • Easy bruising
  • Muscle fatigue and pain
  • Chronic degenerative joint disease
  • Advanced premature osteoarthritis with chronic pain
  • Heart valve problems (mitral valve prolapse and aortic root dilation)
Vascular type (formerly type IV) EDSThis type of EDS is rare, but it's one of the most serious. It affects an estimated 1 in 100,000 to 200,000 people. Signs and symptoms include:
  • Fragile blood vessels and organs that are prone to tearing (rupture)
  • Thin, translucent skin that bruises easily
  • Characteristic facial appearance, including protruding eyes, thin nose and lips, sunken cheeks and small chin
  • Collapsed lung (pneumothorax)
  • Heart valve problems (mitral valve prolapse and others)
Other types of EDSThe other types of EDS are extremely rare. Some have only been described in a few families. In addition, the relationship of some of these types to the syndrome as a whole isn't well defined.

Beighton Score (useful for diagnosing all types of EDS)

Score 1 point if you can bend and place your hands flat on the floor without bending your knees

Score 1 point for each elbow that will bend backwards.

Score 1 point for each hand when you can bend the little finger back beyond 90 degrees

Score 1 point for each knee that will bend backwards

May is Lupus Awareness Month

As I've probably mentioned, May is EDS Awareness Month.  I also want to recognize that May is an awareness month for problems other than just EDS.  All of the awareness campaigns listed are in the USA unless otherwise noted.  A few of the other awareness campaigns are for: stroke, lupus, MS (in Canada), Huntington's Disease (in Canada), Osteoporosis (in the UK), Cystic Fibrosis (in the UK), Melanoma/Skin Cancer, Arthristis, Better Sleep, Mental Health, Asthma and Allergy, High Blood Pressure, Better Hearing and Speech, Cancer Research, Correct Posture, Neurofibromatosis, Hepatitis, and Lyme Disease.  I've decided that that in honor of my spoonie lupie friends, I will do a blog on Lupus for Lupus Awareness Month.  Of course I celebrated May 12th with a lot of fibromyalgia and ME/CFS awareness and education, because that day was fibromyalgia and ME/CFS awareness day.  :-)

Lupus is an auto-immune disease, which means the body's own defenses start attacking itself.  You may be more familiar with another auto-immune disease, Hashimoto's Thyroiditis, a form of hypothyroidism.  After a person develops one auto-immune disease, they are at-risk for other ones.  Examples of other auto-immune diseases include: Rheumatoid Arthritis (RA)Sjögren's syndromePolymyalgia RheumaticaGuillain-Barre syndromeSclerodermaType 1 Diabetes Mellitus, Grave's Disease (a form of hyperthyroidism), Celiac DiseaseMultiple sclerosis (MS), and Addison's Disease.

Lupus can be deadly.  When the body attacks it's own's tissue and organs, it causes inflammation.  There are four types of lupus systemic lupus erythematosu s (SLE), discoid lupus erythematosus (DLE), drug-induced lupus erythematosus (DIL), and neonatal lupus.  Women get lupus more than men and while there are treatments for lupus, there is no cure.  The SLE type is the what most people are referring to when they just say "Lupus."

In SLE the kidneys can be affected and can ultimately put the patient on dialysis.  The blood pressure in the lungs, which are often affected, are also increased.  This is called pulmonary hypertension.  The nervous system and brain can actually become inflamed with SLE.  This causes memory loss, confusion, headaches, and strokes.  Pain and severe fatigue are also part of SLE.  SLE patients also experience hardening of the arteries, also called coronary artery disease.  This can lead to heart attacks.  The blood vessels in the brain can also become inflamed, causing fevers, seizures, and behavioral changes.  The famous lupus "butterfly rash"  is a rash across both cheeks and over the bridge of the nose commonly seen in those with lupus.  In the SLE type people get mouth sores, anxiety, shortness of breath, alopecia (hair loss), Reynaud's phenomenon, dry eyes, and fever.  

DLE is a chronic skin condition of sores and inflammation that leave scars behind.  These lesions are red, scaling, crusty,and inflamed.  The rim may be darker than normal and the middle may be lighter in color.  DLE has three types: localized, generalized, and the childhood type.  The lesions usually appear on the scalp, bridge of nose, cheeks, lower lip, and ears.  The lesions can also appear in the mouth, nose, or vagina.  Ten percent of people with DLE will develop SLE, but most likely the person had SLE already and the skin inflammation was the first symptom to show.  The lupus "butterfly rash" can also occur with DLE.  The childhood form of DLE often turns into SLE when the child reaches adulthood.  A famous person with this condition is the singer Seal.

DIL is similar to SLE, but it is caused by a medication and will disappear once that medication is stopped.  There are 38 known medications that cause DIL.  The rate at which the body metabolizes the medication can predispose someone to getting DIL if they are on one of these medications: 

High Risk:
Procainamide (antiarrhythmic), Hydralazine (antihypertensive) 
Moderate to low risk: Isoniazid (antibiotic), Minocycline (antibiotic), Pyrazinamide (antibiotic), Quinidine (antiarrhythmic), D-Penicillamine (anti-inflammatory), Carbamazepine (anticonvulsant), Oxcarbazepine (anticonvulsant), Phenytoin (anticonvulsant), Propafenone (antiarrhythmic)
DIL causes muscle pain and joint swelling, flu like symptoms, fever, serositis (fluid build up around the heart), and abnormal test results.  After stopping the medication relief should start within three days and disappear within one to two weeks.

Neonatal lupus erythematosus happens to a baby born to a mother with the SLE type of lupus.  It is associated with the Ro/SSA antibody carried by the mother.  Neonatal lupus is a rare condition.  The baby with neonatal lupus develps has a rash, resembling DLE, and sometimes with systemic abnormalities such as heart block or hepatosplenomegaly.  They also have liver problems, or low blood cell counts.  They are born with no skin lesions and it isn't until a few weeks after birth that they appear.  This type of lupus is usually benign and self-limited.  It goes away after several months.  If a pregnant woman with lupus tests as at-risk, doctors can treat the baby before or at birth.  Most babies born to mothers with lupus are healthy.

You know how Dr. House says it's never lupus?  That's because lupus is known as one of the "great imitators" for it's ability to appear as another illness, when really lupus was the problem all along.  So when Dr. House says it's never lupus, he's wrong.  Lupus is more common that I realized, too.  If you suspect that you may have lupus, go to the Lupus Foundation of America's Could I have Lupus? checklist.  I also recommend their page on The Impact of Lupus on the Body.  These are both about the SLE type of lupus.

Lupus is also more common in blacks, Hispanics, Native Americans, and Asians.  It is usually diagnosed between the ages of 15 and 40.  Lupus is present in 1 out of every 250 black women and 1 out of 1,000 white women.  The treatments for Lupus often make the patient sick.  Better treatments and a cure for Lupus will hopefully be discovered soon.


Related Posts Plugin for WordPress, Blogger...