I'm Sick- Really

So much has changed since I started this blog. From fat photos and fat acceptance 101, to being disabled and fighting for a life that resembles normal. Stay with me on my journey through being a fat, disabled, queer, woman. Life is a challenge, but disabled voices are valid and important too. Below you'll find a list and short description of several chronic illnesses. This is not all of my chronic illnesses, nor does it contain a complete list of symptoms. 

1. Ehlers-Danlos Syndrome- a connective tissue disorder where the body makes faulty collagen. I have hypermobile type which means that a lot of my joints pop in and out (dislocations and subluxations), but it also means more that is less obvious such as medications not working correctly in my body, as well as other illnesses that are believed to be related. Chronic, severe, pain, is associated with EDS. Often requires many braces for various joints. Some EDS patients require wheelchairs either part time or full time.

  • Cranial Settling- A result of Ehlers-Danlos, the faulty connective tissues that hold a person's skull in place don't have the strength to hold mine, resulting in the back of the skull sinking down and putting pressure on the brain stem, neck, and spine. Results in neurological symptoms that are widely varied and can be mild to severe, and can include dizziness, nausea, double vision, slurred speech, seizure, and more.
  • Intracranial Hypertension- A result of Cranial Settling, the increased pressure in the brain causes debilitating headaches that cannot be treated with things like traditional migraine medications (because they're not migraines). It requires lifelong medication and, often, surgeries to take the pressure off such as stents being put in place to drain excess fluid. Without intervention, long term increased pressure results in things like atrophy of the cerebellum. A cervical traction collar, and a non-traction cervical collar are handy tools to have in one's collection with both cranial settling and intracranial hypertension. 


2. Postural Orthostatic Tachycardia Syndrome- a problem with the autonomic nervous system (the system that tells your heart to beat, and your body to cool or heat itself).  By definition your heart rate has to change by 30 or more beats per minute between lying and standing positions. My base heart rate while lying down is around 60, while my standing heart rate is around 120. Heart rate can increase with relatively light activity such as walking the dog, doing laundry, or even walking around a grocery store. The highest that mine has been recorded at was 170 after walking my dog. For reference, a friend's heart rate while running a marathon gets to about 160. This illness often includes syncope (passing out). Simply standing or walking often results in dizziness, severe nausea, weak and shaky muscles, and general bad feeling, which serve as warnings to sit or lie down or else risk fainting. A wheelchair is helpful when navigating events or errands that require walking.

3.Mast Cell Activation Disorder- Mast cells are white blood cells that house histamine. You know, the stuff that makes you sneeze when spring rolls around. While I have very few "true" allergies (allergies that can be read on a blood test), I have far too many "allergic type reactions". Which means all of the same symptoms as allergies but harder to diagnose. These reactions can include nausea, hives, difficulty breathing, swelling, flushing, and even anaphylaxis. MCAD also causes a lot of reactions to things like medications and, since reactions can be sudden where no reaction was seen before, being in any medical facility or undergoing any procedure can become dangerous. Emergency antihistamines, an inhaler, and EpiPens are often carried at all times. Many patients also have medical grade masks to help with scents that may trigger reactions. A few of my new "allergies" include tropical fruits, soy, perfume, chocolate, and sunlight.

4. Fibromyalgia - Fibromyalgia is a pain disorder that may be caused by overactive nerves. Though very little is known about the cause of Fibromyalgia, researchers believe it is triggered by trauma and interferes with the way mitochondria act and react. It is a progressive disease with very few medications to help ease symptoms. The classic signs are muscle and joint pain that is atypical for the person's age or health status.

5. Myalgic Encephalomyelitis - Sometimes called Chronic Fatigue Syndrome- though that term is outdated and does not duly describe the severity of this illness, may be related to Fibromyalgia as they are often diagnosed together. It's called Chronic Fatigue because of the constant exhaustion that comes with it. With ME, every bit of physical exertion causes an energy fall. A bit like a sugar high makes you sleepy, but instead, getting dressed in the morning makes you have to go back to sleep for several hours. It does, of course, exist on a spectrum with some people even being able to keep down a job. ME can go into remission, but it's not a guarantee. Exertion makes it worse, as the body is unable to recover from even small amounts of exercise, and often causes a flare of both Fibromyalgia and ME. 

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