I will never ever be able to come close to performing, functioning and having the mind-set I once did prior to this horribly debilitating illnesses.
It causes me extreme depression… frustration and sadness. Those of us who suffer with Arachnoiditis , Lupus, Arthritis, Endometriosis, MS etc. or the combination. We live our lives however, our standard of living is incredibly compromised!
The individuals we once we/us) dies. That person that was able to go to work, engage with family, friends, interact with life and sustain a sense of normalcy is gone.
I am always going to be me Cathy Kean
But…I am substantially DIFFERENT!
I suffer with cognitive difficulties or fibro fog, headaches, sensory sensitivity, exhaustion, muscle tightness,
digestive issues, anxiety, depression never feel good, lack of control, grief, worry, immune dysfunction, chest pain, panic attacks, inflammation, insomnia, memory loss, my body, our bodies are overly sensitive to hmm-mm well, pretty much everything! It’s not that were emotionally over-sensitive it’s a psychological thing…
Medically speaking the word sensitivity is because something in the immune system malfunctions and begins reacting inappropriately to a substance the immune system has been sensitized to the substance.The central nervous system or CNS is made up of your brain, spinal cord and nerves of the spinal cord. The entire nervous system becomes sensitized to anything unpleasant the medical term for those unpleasant things is “noxious stimuli” it can be a bad smell, pain, bright light anything because our bodies are sensitive they react more strongly than most people, lights are too bright for us when they’re just fine for other people. The same goes for noise and visual chaos, heat, cold, pressure on the skin,.. etc… Our nerves overreact to the things around us, and our brains basically get overloaded when they get the signals which makes it worse and intensifies our pain in addition to other factors. Imagine feeling like you were burning from the inside out. Stress, let me repeat this stress, is a huge, huge, huge factor in exacerbating these already excruciating issues !
Comments we hear that hurt those of us who suffer from fibromyalgia/lupus/MS/Arthritis/Endometriosis etc… are comments such as,
“But you don’t look sick”,
“Must be nice to sit in bed all day”,
“Your pain can’t be that bad”,
I live with an intense deep exhaustion that makes every movement feel like I’m trying to move at the bottom of the ocean.
I suffer from an extremely sensitive heat intolerance that makes me feel light-headed, faint even in what feels like a normal room temperature to you My bones often feel like someone is using a jack hammer on them, especially during a change of weather.
Something… anything even something little, stresses or worries me, my body rebels and symptoms flare up just for the fun of it. My nerves often give me Phantom inches that make me scratch myself raw with an itch that doesn’t really exist.
The simplest tasks can take me more than 10 times longer and take five times as much energy to finish than a normal person
It is extremely difficult for me to concentrate on anything, and as a result my memory suffers drastically! I am told constantly by others don’t you remember I told you thinking I intentionally trying to get out of something…
But, unless you’ve walked in our shoes and carry our burden you will never ever know the struggles beneath our surface…!#!!
++to be continued getting tired but will probably just lay there in pain
but with the support of others the best mind frame possible that is part of the battle an instrumental part of the battle!
Hello my name is Cathy, thank you so much for visiting my site. I am all kinds of
complicated! :) I am a single mother... actually divorced mother of 4 grown adult children and seven amazing grandchildren. I was diagnosed with lupus, malabsorbtion, anxiety, Stiff Person Syndrome, anemia, post traumatic stress syndrome, Parkinson's and the list goes on and on approximately 7+ years ago. Doctors said, I only had 3 months to live as I had been on TPN What it is:
TPN is a way of supplying all the nutritional needs of the body by bypassing the digestive system and dripping nutrient solution directly into a vein.
TPN is used when individuals cannot or should not get their nutrition through eating. TPN is used when the intestines are obstructed, when the small intestine is not absorbing nutrients properly, or a gastrointestinal fistula (abnormal connection) is present. TPN is also used foR malnourished individuals. It is also used for patients who have gastroparesis and cannot digest food properly. (http://medical-dictionary.thefreedictionary.com/total+parenteral+nutrition)
TPN is normally given through a large central vein. A catheter is inserted into the vein in the chest area under local anesthesia and sterile conditions. Often the placement is done in an operating room to decrease the chance of infection. Several different types catheters are used based on the reason TPN is needed and the expected length of treatment. Once the catheter is in place, a chest x ray is done to make sure the placement is correct.
It may also be used at home for long-term therapy. TPN solution is mixed daily under sterile conditions. Maintaining sterility is essential for preventing infection. For this reason, the outside tubing leading from the bag of solution to the catheter is changed daily, and special dressings covering the catheter are changed every other day. (http://medical-dictionary.thefreedictionary.com/total+parenteral+nutrition
which was provided through a port-a-cath in my chest for 12 to 24 hours everyday. As my body kept getting septic I was no longer able to withstand any kind of foreign object in my body which led to them taking out the port. Friends, family were told about the three-months. I was devastated it's hard to even articulate the feelings you feel when you are given that kind of news. At that time I was going through divorce I thought no matter what even though we're going through the divorce he cared at one point so I reached out and called him I needed someone to talk to. Only to get totally ignored I further slipped into a dark depression. About two weeks after the news my second oldest called me and told me that he had a baby on the way. Always, always wanted a grandchild I thought there was no way I'm leaving this Earth without seeing that baby. Jeremiah was born in December 7th of 2010 such a gorgeous beautiful baby he literally slept in my room every single day and night he was my shadow. At 2 months I knew he had autism I knew it with everything I was my youngest son has autism and God you spoke to me. So that's almost 7 years ago and I'm still here i'm trying to fight to hang on it's getting harder and harder days are getting longer and longer I getting sicker and sicker. I have to hang on to make sure my Jeremiah is able to receive services so my baby doesn't get institutionalized. I will add more just wanted to give you a brief update...
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