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Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Bree's Story.'

Lilac Hydrangea

Hi my name is Bree and I was married now divorced. I have 2 children both in their 30’s. No grandchildren unless you call 3 cats my fur grand babies. I am also the mum to two fur dog babies.

I have several chronic illness’s so here is my wonderful list. I will start with what I was diagnosed first with.

Tuberous Sclerosis - Tuberous sclerosis--also called tuberous sclerosis complex (TSC)1--is a rare, multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, liver, heart, eyes, lungs, and skin. It usually affects the central nervous system and results in a combination of symptoms including seizures, developmental delay, behavioral problems, skin abnormalities, and kidney disease. I have all of these and on bad days you can see it on my face. I often get asked if I have Lupus.

Hashimoto Thyroid Disease. - Its an auto immune condition where the body has attacked the thyroid.

High blood pressure

Anxiety - is a general term for several disorders that cause nervousness, fear, apprehension, and worrying. These disorders affect how we feel and behave and can cause physical symptoms

Fibromyalgia - Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

Rheumatoid Arthritis - It causes inflammation in the lining of your joints . As a result, your joints may get red, warm, swollen, and painful. RA affects joints on both sides of the body, such as both hands, both wrists, or both knees. This symmetry helps to set it apart from other types of arthritis. I have it in my fingers and wrists. So writing hurts and even typing on the lap top.

Adrenal insufficiency - The adrenal glands are small glands located on top of each kidney. They produce hormones that you can't live without, including sex hormones and cortisol. Cortisol helps you respond to stress and has many other important functions. With adrenal gland disorders, your glands make too much or not enough hormones.

Lymphangiomiomatosis or Lam for short - is a rare lung disease that tends to affect women of childbearing age.

In LAM lung disease, muscle cells that line the lungs' airways and blood vessels begin to multiply abnormally. These muscle cells spread into areas of the lung where they don't belong.

The air sacs in the lung also swell and form small pockets called cysts. As the cysts develop throughout the lungs, LAM causes breathing problems similar to emphysema. I have chronic asthma as a result.

The muscle cells can spread outside the lung, forming noncancerous tumors on organs in the abdomen and pelvis.

Osteoarthritis - also called degenerative joint disease and osteoarthrosis, is the most common form of arthritis. It is characterized by the breakdown of cartilage in joints (i.e., intersections of two bones) and is often caused by "wear and tear."My hips and the muscle connecting the right hip has nearly given away. I also have it in my knees.


Meniers Disease - Meniere's disease is a disorder of the inner ear that causes episodes in which you feel as if you're spinning (vertigo), and you have fluctuating hearing loss with a progressive, ultimately permanent loss of hearing, ringing in the ear (tinnitus), and sometimes a feeling of fullness or pressure in your ear.

Its funny when I think what I used to do before I was diagnosed, I really don’t have anything come to mind. It seems as if this life as I know it has been all that I know. I haven’t worked for 4 years. Fatigue and body aches and chronic asthma was the reason I had to stop working. For the last two years I have been writing a blog on travel with my sisters and highlighting all of my chronic illness’s. I am enjoying the writing and taking photographs and hope to eventually write a novel based on our travels. Bit of romance thrown in for good measure.

I can remember as a child telling my mum I felt a blackness coming over me. That was the epilepsy that I had as a child. My mum took me to the doctors and I do remember having several “diagnostic tests” however it all came up with “nothing”. I was told I was a hypochondriac. No one diagnosed me until I was 26 after my second child was born. That was with Tuberous Sclerosis. It took another few years before being diagnosed with Chronic Fatigue which was actually Thyroid Disease. Gradually I would be diagnosed with the rest. Meniers was the last back in 2015. I suppose as some of the chronic diseases’s I have are auto-immune it is possible but hopefully not that I may get a few more.

Initially there was no internet when I was first diagnosed. However, eventually I was able to find some amazing groups on Yahoo and then Facebook. There is some great information out there now at our fingertips. However, don’t believe all that you read.

I am on blood pressure medication, Thyroid Medication, pain killers and a host of supplements. I have just started taking a drug for the tumors on my kidneys and liver - a part of Tuberous Sclerosis. Affintor its a breast cancer drug and has had some awesome results in reducing the size of the tumors. Fingers crossed it works for me. My Kidneys and Liver are full of these anxgiomiopalomas - fatty tissue. In fact the kidneys are so full of them that they the kidneys are larger than normal. I wasn’t diagnosed with it until I was pregnant with my second child. They thought it was kidney cancer and they had to rule it out. I went into hospital and had a biopsy at 3 months pregnant and knew if it was cancer then I may lose my baby.

Bree and her daughter

Some days all I can do is stay home and rest. A day out to the specialists can knock me around for days. I am currently going to physiotherapy and hydrotherapy for an injury to my knee. So often after doing that all I can do is go home and chill on the couch. The fatigue from all of these illness’s is the worst. Its like walking into a brick wall, bam…and then you stop. Its like you can’t more an inch further and the pain of hitting that brick wall is shocking. Some days I feel as if a huge 16 wheeler truck has run over me. In the thyroid community we often “joke” about being hit by a bus.

Many years later I found out my grandfather on my mums side died of Thyroid disease. So it looks like auto immune conditions are in my family. One sister has Rheumatoid Arthritis and is constantly checked for Thyroid disease.

My youngest also has Tuberous Sclerosis and Lam. She unfortunately is intellectually disabled from the TS.

My illness's are what you call hidden so looking at me people don't realize that I have anything wrong.

My friends understand me when I say to them “I’m tired” and the reason is they too either have one or more of the same or similar chronic illness’s. They know not to say “just push through the pain, no pain is no gain. I do hope that one day a cure will be found for Lam along with Tuberous Sclerosis.

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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