Sunny Amerman, of Insomnia Doodles and The Mighty author, wrote a post on her Insomnia Doodles blog on why she celebrated being approved for disability support by going bowling, titled:
"I know that headline caused some eyebrows to jump towards the ceiling, so please allow me to explain:
Disabled ≠ Incapacitated
I repeat- Being disabled does not necessarily mean that you are physically incapacitated.
This is something I wish more people understood, and the taboo imposed on those of us with debilitating invisible conditions is so great that I honestly had to think long and hard about whether or not I was brave enough to write this article. I mulled over the idea, worrying about the potential backlash of ableism and judgement that might follow. When I realized just how afraid I was to write this, that’s when I knew I had to."
I think some people are going to learn a great deal from it and those like me who have Panhypopituitarism know that you might get a rare good day and most of the other are a struggle. It’s very important to socialise and to celebrate with friends, especially after a very long and drawn out process to being approved for disability support.
Like Sunny, I get ableist remarks from some people, mostly when I use my Mobility scooter. Just because I can walk short distances doesn’t mean I can do it all the time. I might look like I have fully functional feet because I wear Colorado boots every day of my life to lock my ankle so I don’t walk over my heels. I do walk for exercise but I often use my scooter for shopping trips and to carry my bags.
I have a bad neck and can’t drive due to a fall down 23 stairs and a car accident. I can’t turn my head most days and I have muscle wastage from the degenerated discs in my neck. I’ve had people make snide comments under their breath or straight to my face that I should ‘get of your fat ass and walk, you lazy bitch’. Yes, people can be very judgemental.
The last person who said so got an education in not judging a book by its cover when I explained my medical history and they apologised and gave me a hug and said it was amazing I was getting around with a smile despite Chronic pain and Chronic Illness. I usually don’t let people’s harsh words ruin my day but sometimes I decide to turn the situation into a learning experience.
I am trying to walk more, only on level ground or I twist my ankle and can’t walk at all. I signed up for Walk For Autism which starts tomorrow. 10,000 steps a day (roughly 6km) for 8 days - a mammoth task for me but I’m going to do my best - especially when it helps people with autism!
I use a mobility scooter to get around most days and whilst some people are downright rude and point fingers at me for being a 'young' woman (47 years old) riding a mobility scooter when I don't look disabled.
I do find that if I put a smile on my face and apologise if I get too close to someone (usually their fault) and smile then most people smile back and say 'no problem'. It's all about the attitude in my experience. I put myself in their shoes. Having a moving vehicle getting close to pedestrians can be scary for the pedestrians.
I am so grateful for every kindness shown to me, which can be as small as a smile, stepping to the side so I can pass, or cars stopping so I can make it across traffic (something which can be hair-raising at times! I am very fortunate that the majority of people are nice and understanding.
This afternoon I was on my way to Raby Bay to walk a friend’s dogs after doing 7,500 steps earlier in the day. On the way, on the ‘Rainbow Serpent’ pathway from the Cleveland Library to the Raby Bay Harbour / Marina, I had a cyclist ram my scooter and cause 3cm worth of damage to the front of my mobility scooter where his wheel crashed into the plastic to the right of the left front wheel.
We collided twice and I got a small whiplash, thrown forward and then back, wrenching my back and neck and went into shock which lasted for hours.
I’m about to stress dose with some Cortisone as I feel adrenal crisis due to the physical and psychological shock I experienced. Google ‘Panhypopituitarism’ and shock and you’ll read how people with my disease can die from an adrenal crisis.
It wasn’t entirely his fault as the hedges block off the view of someone coming around the corner but he was going VERY fast and crashed his wheel in between my left wheel and the front of the scooter which has a black handle.
The plastic has shattered and you can see the usually hidden part of the front place handle through the cream plastic casing. I was severely shaken up with slight whiplash and I went into shock, hands and spine-tingling and felt nauseous.
The young man riding the bicycle seemed very remorseful and kept asking if I was ok but he was the one that was launched forward and hit the front of my scooter and almost smashed into my face 😯 I asked him to go to the hospital to get checked out. but he said he was fine.
I will take a photo of the damage to the scooter in the morning as it is already 7.23pm and my iPhone 6S Plus has a dodgy camera that has 90% of images look like my hands are shaking from side to side. Annoying because I love taking photos and it only stops when I hold a magnet near the camera lens. Weird, right? I found this solution on a google search.
But I digress, photo in the morning and I’ll be visiting the council and demanding they reduce the hight of the hedge before the next accident is fatal. The young man could have become a quadriplegic if he had fallen. Not good enough!
I’m aching from head to toe and still a little shaken. I’m about to get into the bath and then get into bed with my heated back and shoulder blanket and recover from a very eventful day. I am 1, 428 steps short of 10,000 but everyone said I should just head home and recover so I relented even though it annoyed me that I was so close. I will add it onto tomorrow’s 10,000 steps. Wish me luck!
Time to go self-care and hope I can get out of bed in the morning.
Yay!!!! Growth Hormone Replacement therapy for people with Growth Hormone Insufficiency!
Great news for people with growth hormone insufficiency in Australia. Growth Hormone is now on the Pharmaceutical Benefits Scheme which means free Growth Hormone!
I’ve waited for this day since I was 19 and cut off Growth Hormone after three years on it. I grew to 154cm and noticed a difference in my metabolism and quality of life. I have Panhypopituitarism, a disease of the pituitary caused by an underdeveloped pituitary gland and absent pituitary stalk. It affects my health on a daily basis and means that I have no growth hormones in my system.
I’m so happy that the government has listened. I’m seeing my Endocrinologist this month and I will definitely be bringing it up with her.
I am 45 years of age and have Clubfeet. I was also born with Panhypopituitarism due to the fact that I received an insufficiency of growth hormone in the womb and my pituitary gland didn't develop.
I had several operations on my tendons and at age 9 I had invasive surgery where the orthopaedic surgeons broke my bones, chiselled them, re-set them and placed a surgical staple in my calcanae. Looking at X-Rays you can see where they fused two of my toes together at the base and the surgical staple.
Due to Panhypopituitarism, I was born 2 1/2 years shorter than my peers so I went on growth hormone when I was 16-19 and when I stopped using the growth hormone injections I was supposed to have an operation on my heels. I was at University and didn't want to interrupt my studies so put off the operation.
Now I'm 45 and I still walk over my heel, have week ankles and can't stand for long periods. I wear Colorado boots to lock the heel, which is restrictive and heavy. It is my dream to have an operation on my feet and finally be able to wear something other than Colorado shoes and still be supported and not jar my ankles when walking or standing.
I am very nervous about the surgeries and have only just started researching Orthopaedic surgeons in Brisbane, Australia, however, I did move into a house that is disability friendly.
If you or someone you know has had reconstructive heel surgery as an adult I'd love to hear from you. This operation is way overdue but at the time the only doctors near me where considered 'butchers' by the patients and I wasn't willing to make things worse.
I was born with Talipes Equinovarus, also known as Club Feet. This is a condition that stemmed from my primary condition of Panhypopituitarism and Growth Hormone Insufficiency.
So what is Talipes?
"In clubfoot, the tendons on the inside of the leg are shortened, the bones have an unusual shape, and the Achilles tendon is tightened." (1)
A good image showing before and after treatment can be seen below:
Recently I was on Instagram and saw the image by @_kurstiof a child wearing a 'boots and bar' apparatus similar to the one I had to straighten the toddler's feet into the correct position. It didn't work so I underwent invasive surgery.
I remember feeling frustrated that I had to sit in the one position and it made it difficult to move around. My mum helped me by teaching me how to read by the age of 2 and I always had a book handy to take my mind off things. I am now sitting in one position for up to 18 hrs a day with my website and social media marketing company.
When the boots and bar and manipulations obviously were not working, the Orthopaedic Surgeon cut my tendons, lengthened the inside of the foot tendon and shortened the outside of the foot, in both feet. It didn't work very well and I kept tripping over as my toes would turn inwards.
I am grateful for the lessons of tolerance and patience that it taught me. I had some amazing people in my life that went out of their way to increase my quality of life and extend upon my skills and talents. Today I wear Colorado boots which help to lock my weak ankles and allow me to walk up to 3km on level ground. I still experience pain and discomfort on a daily basis with poor circulation after my first operation where they cut my tendons and tried to make my feet turn outwards. When I was 9 I had another operation, this time they broke some bones in my feet and chiseled bones then added a surgical staple in my calcanae which is still in operation today. It caused juvenile arthritis and cold weather made it worse.
I know it was hard for my mother but she persisted with my physical therapy and despite doctors advice that I wouldn't walk until the age of three, she would strengthen my leg muscles and hold me up against the wall and build up my muscle until I not only walked developed calf muscles which was again contrary to doctor's opinion.
My mum was determined that I would walk and I can never thank her enough for the fierce determination she showed as a mother of a baby with talipes equinovarus. I am grateful for that her every day.
Below is a photo of my feet, taken when I was at the Podiatrist's.
In the photos you can see that I walk over my heel as it is malformed. I was supposed to have a heel operation in my late teens but since I was studying my degree I didn't want to take time off. I'm now 45 and suffer from weak ankles and jarring when I walk over my heel when not wearing Colorado boots done up tightly to lock the heel. They are very constrictive but I am so thankful for them. Most people don't notice my talipes. Some notice that one hip is higher than the other, though and my gait is a little lopsided. I am able to walk up to 3km on a good health day, which is amazing. I can't jump or run or hop or enjoy a trampolene but compared to what I was like when I was born and a toddler I am so thankful to my Orthopaedic Surgeons for what they did for me.
@_kursti posted a photo of #bootsandbar apparatus similar to the one I used to wear on my #feet which helps to correct #talipes or #clubfeet
As I was a toddler and there was no photos taken of me in them, I can only go on how they were described to me.
"The #orthosis is two open-toed leather boots connected by a metal bar. The Boots and Bar orthosis is also called a #footabductionbrace orthosis or a #DenisBrownesplint The brace holds the child’s feet turned outwards and in the corrected position. "
I remember feeling #frustrated that I had to sit in the one position and it made it difficult to move around. My mum helped me by teaching me how to read by the age of 2 and I always had a #book handy to take my mind off things. I am now sitting in one position for up to 18 hrs a day with my #website and #socialmedia#marketing company.
I am #grateful for the lessons of tolerance and patience that it taught me. I had some amazing people in my life that went out of their way to increase my quality of life and extend upon my skills and talents.
I know it was hard for my mother but she persisted with my #physicaltherapy and despite doctors advice that I wouldn't walk until the age of three, she would strengthen my leg muscles.
She would hold me up against the wall and build up the #muscle strength in my feet and legs until I not only walked developed #calfmuscles which was again contrary to doctor's opinion.
I still experience #pain and #discomfort on a daily basis with poor circulation after my first #operation where they cut my #tendons and tried to make my feet turn outwards. It didn't work and means that I get #pinsandneedles on a regular basis.
I feel blessed that the #orthopaedic doctors and #orthapedicsurgeryspecialists met for a convention when I was 9. My mum and I had travelled up from #wollongong to the #sydneychildrenshospital and I was presented to a group of surgeons who specialised in talipes correction. After examining me they said that there was a new operation which I would be a good candidate for.
In this ground breaking surgery they broke some bones in my feet, chiseled bones and then re-set them and added a surgical staple in my #calcanae which is still in operation today.
The breaking and chiseling of bones caused #juvenilearthritis and cold #weather made it worse. I remember that I did a lot of crying through the night with pain that was crippling and my heart goes out to people like my husband who lives with the pain and aches of arthritis on a daily basis.
Today I wear #colorado #boots which help to lock my #weakankles and allow me to walk up to 3km on level ground. I wear them almost every day and they provide support but are heavy and very constrictive and make my feet ache. I prefer aching, constricted feet to the alternate of walking over my malformed heel and twisting my ankle and not being able to walk at all.
Thanks to my mothers determination that I would have a good education I #graduated from university of wollongong with a degree in #Education with a specialisation in #informationtechnology and #communication which I am forever #thankful for.
I was a casual/ substitute teacher in primary school ( Years K-6 ) until I moved to Tasmania with the death of my father in law. It was mandatory that casual teachers must supervise yard duty at recess and lunch time plus sport where I stood on uneven ground which caused great pain and sometimes I couldn't walk without yelping in pain.
In my degree ( B.Ed) I had excelled at Website Design and Development and whilst living in Tasmania 2000-2002 I focused on creating a collaborative group work project called The Crab Street Journal, a web based magazine for Land Hermit Crab owners. There were over 2000 people in the Land Hermit Crab Owners Society and a group of us published the magazine which is still in operation today.
It made me feel productive and fulfilled and I decided that since I could work around my Panhypopituitarism ( PHP) which in simple terms is Pituitary Disease. I could work my own hours and live a creative, fulfilling life. I love my job as Website Developer and Social Media Specialist. I still use my Education degree when I train my adult clients and whilst I miss teaching children I am glad that I made the decision to chose to retire from teaching in primary schools that were not sensitive to my physical issues due to talipes and health issues with PHP.
I love my life and feel that my adversity had made me the strong, resilient and compassionate person that I am today
When I was a baby in my Mother’s uterus I did not receive enough Growth Hormone and as such parts of my body were under-developed. Thus included my pituitary gland (60% of a full size pituitary gland at age 20) and some bones in my feet causing Congenital Talipes Equinovarus. Congential (from birth) Talipes (Club feet) Equinovarus refers to the position the foot is in (see picture below).
I had it in both feet, with my left foot having a weaker ankle. I had several operations correcting the talipes, firstly severing my tendons and re-attaching so that my feet would straighten out - it didn’t last and causes poor circulation and other problems. The last operation was to break the bones in my feet, chisel them, set them with a surgical staple and put me in plaster from my toes to my hips.
I then had to learn how to walk again after the plasters came off. I am now able to walk up to 3.5km on uneven ground and although people that look closely can see my foot roll, most people don’t notice my mobility disability as I wear Colorado and Caterpillar boots to lock my heel. They are terrifically restrictive and uncomfortable but bearable.
So back to Panhypopituitarism:
What is CPHP?
“Panhypopituitarism is a condition of inadequate or absent production of the anterior pituitary hormones. It is frequently the result of other problems that affect the pituitary gland and either reduce or destroy its function or interfere with hypothalamic secretion of the varying pituitary-releasing hormones. Panhypopituitarism can be the end result of various clinical scenarios. The signs and symptoms are diverse. Manifestations that suggest congenital anterior hypopituitarism include micropenis, midline defects, optic atrophy, hypoglycemia, and poor growth.” (Medscape article on Panhypopituitarism)
“The pituitary gland is called the master endocrine gland of the body because it controls the function of other endocrine organs. The anterior pituitary produces the hormones thyrotropin (thyroid-stimulating hormone [TSH]), corticotropin (adrenocorticotropic hormone [ACTH]), luteinizing hormone (LH), follicle-stimulating hormone (FSH), growth hormone (GH), and prolactin (PRL). The anterior pituitary is controlled by specific hypothalamic-releasing hormones. The posterior pituitary produces vasopressin (antidiuretic hormone [ADH]) and oxytocin.” (Medscape article on Panhypopituitarism)
I was born with a pituitary gland that was only 60% developed and an absent pituitary stalk. My pituitary cannot communicate with the hypothalamus effectively without the pituitary stalk. As a result of this, my body does not produce sufficient cortisone, known as the ‘stress hormone’. My doctor explained it to me in simple terms to a scared 13 year old.
“When people get sick, their cortisone level rises and they get better. When you get sick, your cortisone level plummets and you need to take tablets or have an injection of Cortisone or you will get very ill. Sometimes when you get sick you should take extra or double your dose. If you are ill and unable to keep your tablets down then you will need to go to hospital and have an injection of 100mg of Cortisone (4 times my morning dose). If you get physically, mentally or spiritually stressed, this can affect the level of cortisone in your body. Sometimes it can make it go very high and then crash, leaving you with cortisone withdrawal and since cortisone is a steroid, this can cause ‘roid rage’ mood changes, neck and head pain and other physiological changes. Keep dehydrated or you will most probably have an Addisonian Crisis.” Dr Slobodnuik, Endocrinologist from Wollongong NSW Australia
When I was 18 I started drinking alcohol and waking up with the most severe hangovers and also effects of dehydration on someone with Addisons Disease. It really knocks me around, especially if the alcohol is wine or has Sulphur dioxide in it. I have only vomited three times in my life from alcohol - the first time for mixing the wrong types of alcohol in the one night; the second for having a few drinks of sparkling wine and then a lot of greasy food when celebrating graduating for a Bachelor of Education degree, and the third from overindulging at a party. Each time I felt absolutely horrid and promised myself I would limit myself on alcohol, only having one or two and no more. It has been programmed into me that I should do everything I can to avoid vomiting. I only do it once a year at most - as vomiting and not being able to keep my Cortisone down means hospitalisation. Not fun at all.
My initial diagnosis at age 13 was Addisons Disease (secondary). Basically it means I have Adrenal insufficiency and can go into an Addisonian Crisis if I don’t look after myself.
"Adrenal insufficiency implies that the adrenal glands are incapable of producing sufficient hormones, either in the basal (unstressed) state, representing severe adrenal insufficiency; or under conditions of stress such as infection or trauma, indicative of milder degrees of adrenal insufficiency. So, there are differing degrees of effect. The term does not imply a cause for the adrenal insufficiency, which may be Addison's disease, or derive from a regulatory dysfunction like a pituitary problem, where the adrenal glands are no longer properly regulated by the pituitary ACTH.” (Australian Addisons Disease Association Medical FAQ)
My pituitary was undeveloped, so I have secondary Addison's Disease and not primary Addison's Disease which can be auto-immune related.
Someone in the Australian Addisons Disease Association Membership asked a question about drinking:
Question: For some of the less disciplined among us, we were wondering about alcohol. For some of those that have a problem limiting their consumption. Is there a rough guideline you should stick to, so you don’t crash?
Answer: The first thing is, if you are drinking enough to make yourself sick and want to vomit, it doesn’t matter if you have Addison’s disease or not, you are damaging your brain. I strongly advise anyone whether they have Addison’s disease or not, not to drink so much that they physically get sick, because they are doing themselves permanent brain damage, small amounts each time. If you have reasonable amounts of drinks at night you have disturbed sleep. You don’t get the level of sleep to make your ACTH. So if you don’t have Addison’s disease you wake up with not as much Cortisol in your blood the next morning as you would otherwise have had. So a person with a hangover really has the same effect as having Addison’s. You lot have the advantage because when you do wake up you can take your tablets and your Cortisol level will go up to normal, so you would partially correct some of the side effects of a hangover just by taking your morning dose of cortisone. But there is still a problem in the morning. You crash!
Someone with normal kidneys and normal adrenal glands adjusts blood volume / blood pressure, very quickly and very easily. You can’t. You have to rely on certain medication so you are not changing it (blood volume) as quickly. Sure you have all the other systems but you are lacking some of the control systems. One of the things alcohol does is dehydrate you. It dehydrates you because you end up passing a lot more water because of the alcohol. So one of the problems you would have which would exacerbate, make things worse, is that your blood volume would be way down. So that one of the more important things to do is to drink a lot of fluid. Replace your water and salt as well as the cortisone.
I have not really seen any research or any investigation on alcohol and the problem you mentioned but on first principles, I would argue very strongly, one of the first things to do in Addison’s disease is to keep your blood volume up. You should always be hydrating in anticipation. I think you are probably talking about dehydration the next morning being a major problem.
As you can see, there are good reasons for me to not drink alcohol.
So what exactly is the pituitary gland responsible for?
Image from http://emedicine.medscape.com/article/923789-overview
CORTISOL - THE STRESS HORMONE
Understanding the natural stress response
“When you encounter a perceived threat — a large dog barks at you during your morning walk, for instance — your hypothalamus, a tiny region at the base of your brain, sets off an alarm system in your body. Through a combination of nerve and hormonal signals, this system prompts your adrenal glands, located atop your kidneys, to release a surge of hormones, including adrenaline and cortisol.
Adrenaline increases your heart rate, elevates your blood pressure and boosts energy supplies. Cortisol, the primary stress hormone, increases sugars (glucose) in the bloodstream, enhances your brain's use of glucose and increases the availability of substances that repair tissues.
Cortisol also curbs functions that would be nonessential or detrimental in a fight-or-flight situation. It alters immune system responses and suppresses the digestive system, the reproductive system and growth processes. This complex natural alarm system also communicates with regions of your brain that control mood, motivation and fear.” (Mayo Clinic article on Stress and Cortisone)
Due to my disease, panhypopituitarism, I respond to stress more acutely and feel the effects of stress on my body as if it has gone into shock..
“Psychological or emotional stress can precipitate an Addison’s crisis with the same effectiveness as physical stress or illness, and most endocrinologists recommend the same increase in cortisone or steroid dose during psychological stress and emotional upsets as they do during physical stress or physical illness.” (Australian Addisons Disease Association)
Lower Back pain and Osteoperosis
“Lower back pain in a person with Addison's Disease... one must bear in mind that there is an increased prevalence of osteoporosis in Addison's Disease which may require specific treatment. In this case, specific treatment may be needed and the cause of pain may be a fracture.” (Australian Addisons Disease Association)
I have pain in my lumbar if I do housework such as vacuuming or sweeping. I have difficulty bending over and picking things up. When I sit at the computer for too long I get tingling up and down my spine and have to go and have a bath and pain killers for relief.
What are some of the symptoms adults with a pituitary disorder experience?
