Cushing's Info

How on earth is one meant to write a bio on health/cushings when for 11 years I have been left undiagnosed which has severely impacted my ability to remember in detail?

Everything becomes a blur all mashed together – You get to the point where living like this is a normality and you figure it will just always be like this.

I think after years of seeing overweight unhealthy self neglecting people that doctors lose their passion and desire to help those who actually really need it.

Right so here we go (mostly in point form – easier on my brain and on your eyes)

Me

•       29 yrs female
•       Happy
•       Witty
•       Strong
•       Determined
•       Not one of those typical “sick” people I am not defined by my illness I do not refer to myself as a “cushie” I am Elle and I have something that causes me a lot of grief and I cant wait to repair myself so I can do all the things I passionately want to do.

My angry body before cushing’s

As a child

•       Chronic constipation
•       Pneumonia
•       Recurrent tonsillitis
•       Several head/neck injuries

As a teen

•       Recurrent bronchitis
•       Recurrent tonsillitis
•       Chicken pox at 15
•       Stung by a jelly fish – stopped breathing etc
•       6 months later I fell ill
•       Severe period pain, 2 day heavy clot losing pain then no periods at all etc

My angry body with cushing’s

Apx 17.5yrs – 25yrs

•       Went from 45kg to 85kg within 12 months then have continued to gain rapidly until I reached 100kg – I actually got to 140kg but I’d say the last 40kg was caused somewhat by emotional eating because my life as I knew it was gone!!!!
•       Developed bright red/purple stretchmarks on my breasts, thighs, belly, underarms.
•       Lost ability to walk, no muscle strength
•       Constant infections – bronchitis, tonsillitis, laryngitis, ear infections, sinus infections
•       Chicken pox again 22yrs
•       Developed right side kidney cysts
•       Bed ridden for over 12 months
•       Abnormal blood test results

Apx 25yrs – 29yrs

•       Chicken pox AGAIN 27yrs
•       Meningitis
•       Pyelonephritis – Kidney infection
•       Lap band (weight was going to kill me, managed to get 60kg off 15kg has come back rapidly without any change to diet)

My days, weeks and months vary – I go up then I go down sometimes all within a day.  I can feel when my cortisol is high and what it does to my body.  Over the years I have done further damage to my body by giving up on the search for answers and trying to be like “everyone else” drink go out have fun, but usually this is very short lived as I will get so sick so quick…pretty lonely way to live, it is very hard for healthy people to understand chronic pain or illness.  I take some sadistic joy in people I know getting back aches or migraines because Im like HA! I have that like all the time see what it feels like!!

I wouldn’t know what it is like to not be tired or feel some kind of ache or pain.

I try not to tell too many people my symptoms or details of how I feel as I sound like a whiney always sick person and well if someone told me they suffered all of this and I dint have any understanding id think it was bullshit as well….I don’t have any desire to be whiney or in my head  or sick – I dream of the day the docs say hey we can fix this and then I can go on living life the way I dream of on a daily basis.

Wasn’t really a fair thing to be a healthy bouncy skinny teen and then all of a sudden get sick and stay that way…but I still consider myself fairly lucky.  I have loved and been loved, I live well considering and I have hope for the future.

I know I am always keen to see if anyone has symptoms/naggy complaints like mine so here is a list in no real order of what I suffer/suffered from.

I am currently undergoing another lot of tests – and it looks like I will be finally diagnosed with Cushings – likely a pituitary tumor


Recurrent bacterial infections; Laryngytis, tonsilitis, flu & colds
Sinus infections
Ear infections
Chest infections/bronchitis
Thrush - Recurrent
Uti
Mouth ulcers
Coldsores
Chickenpox three times
Glandular fever
Menangitis
Pyelonephritis
Blurred vision/Painful eyes
Jerking, rapid involuntary eye movement
Conjuntivitis
Puffy eyes
Bags under eyes/dark colour
Yellow eyes
Cognitive problems, such as difficulty concentrating or remembering
Social isolation
Loss of interest in usual hobbies or activities
Difficulty concentrating, disorientation, & mental confusion
Anxiety, feeling ill at ease
Irritability
Raynaud's phenomenon (extreme sensitivity to cold in the hands and feet)
Sweating and hot flashes - Night/Morning & random in day
Excessive sweating
Below normal temperature
Increased sensitivity to cold
Temperature regulation abnormalities
Feeling cold when others feel hot
Feeling hot when others feel cold
Weight gain
Buffalo hump", a fat accumulation over the upper back and trunk
Obesity
Accumulation of fat under the skin, but also in the abdomen
Weight gain in upper body, abdomen
Sudden and unexpected weight gain
Puffy round cheeks, fat neck
Pink or purple stretch on the abdomen, thighs, buttocks, arms and breasts
Violaceous striae wider than 1 cm
Unable to lose weight no matter what (lap band)
Jaw ache / earache / grinding teeth     Kidney Cysts
No restorative sleep; waking feeling unrefreshed or more tired
than before sleep
Vivid and exhausting dreams/nightmares
Chronic, crashing fatigue
Exhaustion after minimal effort or exercise
Constipation
Nausea
Erosive Gastritis
Gas
Bloating
Cramping
Acne (Not normal acne - itchy, heated painful spots)
Thin, course hair
Coarse, dry skin
Warm, sweaty skin
Psorisis - scalp
Fragile, thin skin
Skin rashes
Itchy skin
Scar easily
Dry skin

Muscle weakness
Weakness in lower extremities (can't get up from squat, difficulty climbing stairs/difficulty walking)
Weakness in arms and hands (hand pain, lack of grip)
Numb/pins and needles - hands and feet, legs
Bone, joint and muscle aches, inflammation, and pains
Backaches
Muscle loss
Pain and/or numbness in the hands
Pain and tenderness throughout the body
Chest pain that is not cardiac-related, such as pain in the cartilage or muscles
Fibromyalgia
Stabbing pain right upper thigh
Migraines
Cluster headaches
Bones break easily - broken rib, wrist and toe
Sprain easily - ankles, knees
Neck pain/base of skull
Vertigo
Low blood pressure
Decrease in sexual function
Vaginal dryness
Painful sex
Heavy chest/Chest Pain/Out of breath very easily

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